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Mothers’ perspectives on everyday life with children with autism: Mealtimes explored
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Mothers’ perspectives on everyday life with children with autism: Mealtimes explored
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Content
MOTHERS‘ PERSPECTIVES ON EVERYDAY LIFE
WITH CHILDREN WITH AUTISM:
MEALTIMES EXPLORED
by
Kimberly Wilkinson
A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(OCCUPATIONAL SCIENCE)
DECEMBER 2009
Copyright 2009 Kimberly Wilkinson
ii
Acknowledgements
None of this work would be possible without the generosity of the
mothers I interviewed. They opened their homes and their families to
me. They took time out of their very busy schedules to meet with me and
shared stories that were not always easy to tell. My gratitude to them is
only matched by the respect I have for them.
I would like to express my deep appreciation for the many
individuals whose support and guidance have been invaluable during the
dissertation process and throughout my graduate school experience.
From the first class I had with her, Dr. Mary Lawlor has challenged my
thinking and mentored my scholarship. She has been an extraordinary
dissertation committee chair and her input has vastly improved the
quality of my research and my writing. Her contributions to this project
are immeasurable. In addition, my work has been profoundly influenced
by the scholarship and mentorship of my other two committee members,
Dr. Cheryl Mattingly and Dr. Lanita Jacobs-Huey. I consider myself
extremely lucky to have worked with them and Dr. Lawlor on Boundary
Crossings: Resituating Cultural Competence (NIH Grant #2R01HD38878
and Boundary Crossings: An Ethnographic and Longitudinal Study (NIH
Grant #R01HD38878). They along with the families involved with those
iii
projects who allowed me into their lives taught me so much about
research, families and life in general.
My experiences as a Maternal Child Health Bureau funded fellow
and Occupational Therapy Trainee in the Leadership Education in
Neurological Disabilities (LEND) program at the University of Southern
California University Center for Excellence in Developmental Disabilities
(UCEDD) helped to shape my ideas about the intersections between
clinical and family worlds and helped familiarize me with the multitude
of systems with which families of children with disabilities interact. I
owe special thanks to Dr. Diane Parham, Dr. Alice Kibele, and Chana
Hiranaka for professional leadership, support and friendship as I
transitioned into life as a graduate student in Los Angeles. From the
beginning, fellow trainee Karla Ausderau and I have walked parallel
clinical and scholarly paths. Her friendship, inspiration and support
along the way have made this journey both more possible and more
enjoyable.
I also owe a great debt to my parents, Merit and Jean Wilkinson.
The stable base they provided of support, encouragement, and love is
what has allowed me to reach this point. Last, but certainly not least, I
would like to thank my invaluable network of supportive, loving,
generous and forgiving friends. In particular, Sonia Giddens, Julie Miller,
Theresa Heary, Cynthia Strathman, Leah Diaz and Cynthia Fitzgerald
iv
provided me with words of encouragement and acts of care that were
amazing gifts during this dissertation process.
v
Table of Contents
Acknowledgements ii
List of Figures ix
Abstract x
Chapter 1: Introduction 1
Feeding/Eating/Dining: Critical Occupations 10
The Work of Feeding a Family 12
Feeding vs. Eating vs. Dining 13
Autism Spectrum Disorder (ASD): A Family with a Diagnosis 14
Relation to Occupational Science 16
Relation to Occupational Therapy 18
Research Questions 19
Limitations of the Study 20
Chapter 2: Literature Review 22
Introduction 22
Mealtime and Autism: Clinical Categorization, Popular
Literature, and Intervention Techniques 24
Clinical categorizations 26
Popular literature 28
Intervention techniques 32
Mothering Children with Autism: Intensity, Protection and
Improvisation 33
Intensity 33
Protection 35
Improvisation 37
Autism Spectrum Disorders (ASD) and Sociality 41
Occupational Science 42
Co-occupation 43
Culture, Feeding and Disability: The Cultural Nature of
Feeding and Family Experience 45
Narrative Methodology: The Importance of Listening to Stories 46
Mother‘s perspectives 47
Particularities 48
Breaches 49
vi
Chapter 3: Methodology 51
Introduction 51
Overview of Selection of Methods 52
Mothers and Families: Selection of the Participants 52
Exclusion criteria 53
Recruitment 60
Procedures for Collection of Data 61
Interview Methods 63
Narrative Interviewing and Analysis 66
Narrative and Thematic Analysis 70
Reflexivity 73
Reliability and Validity 76
Conclusion 77
Chapter 4: Stories of Mothering 79
Rachel‘s Story: ―I Feel the Same Thing They Feel.‖ 80
The Diagnosis: A fractured narrative 81
What Lawrence eats: The feeding journey 85
Caring for the inner child: Douglas‘ story 86
Rachel‘s eating history: ―I feel the same thing they feel.‖ 88
Finding help: ―It is like a miracle.‖ 89
Rachel‘s health fails: ―What I‘m going to do?‖ 92
Melanie‘s Story: ―I Just Didn‘t Know‖ 93
Reframing the story: From bad mother to a lack of
information 96
Getting the diagnosis: ―It was horrible. But good.
In a horribly good way.‖ 102
Taking the next step: Working to fill in the blanks 105
Jen‘s Story: Waiting for Him to be Ready 116
The diagnosis: Who is this child? 119
Finding a doctor who listens 125
Advocacy work: A 56-page grievance 125
What Benjamin eats 127
Stress and non-compliance: How Carnation Instant
Breakfast coming only in vanilla creates
a non-compliant mother 129
Creating new occupations: Improvisations in mealtime 132
Floortime/DIR as key to understanding Jen‘s mothering 137
Sofia‘s Story: Getting Inside 150
Making progress slowly: The smelly taco story 153
Gabi‘s Story: Looking for Alternatives 161
What Davey eats 163
Conclusion 165
vii
Chapter 5: Little Victories 167
Introduction 167
The Ordinary Becomes Extraordinary: The Meaning of
French Fries, Chicken Nuggets and Pizza 168
Sharing the News 175
Traveling Stories 178
Other People Think I‘m Crazy: The Social Cost of
Celebrating Little Victories 180
The Victory of Participation: Participating in the
Everyday Occupations of Mealtime and Family Life 182
Coming to the table 182
Participating in typical childhood occupations:
Pizza, birthday cake and juice boxes 185
Conclusion 188
Chapter 6: Beyond Picky Eating: The Occupational Impact
of Autism on Mealtime 190
Introduction 190
Increased Mothering Work for Successful Feeding 194
Social Acceptability and the Ability to Participate in
Occupations of Childhood 197
Disruption of Family Mealtime 198
Giving Medicine 202
Conclusion 203
Chapter 7: Mothering Children with Autism: Real Stories of
Mothering in the Extreme 204
Intensity 206
Protection 211
Dilemmas of Protection 212
Improvisation 216
Mothering and Occupational Science 231
Co-occupation 232
viii
Chapter 8: Reflexivity, Clinical Implications and Findings for
Further Exploration 241
Reflexivity 241
Acting as a clinician researcher: Challenges and benefits. 241
Clinical Implications 248
Little victories 248
Listening to stories 249
The work of mothering: Creating teams and managing
children‘s emotions 250
Implications for Further Research 252
Parents as picky eaters 252
Diagnostic fluidity 254
References 256
ix
List of Figures
Figure 1: Sample Interview Questions 67
Figure 2: Theoretical Assumptions
74
x
Abstract
Children with autism spectrum disorders (ASD) often exhibit differences
in their eating and mealtime behaviors. Feeding children is an important
part of mothering and therefore, differences with eating and mealtime
behaviors can significantly impact a mother's experiences and
perspectives. Surprisingly little has been written about the intersections
of mothering, mealtime and ASD. In answer to this significant gap, this
study used narratively focused interviews to examine the perspectives of
five mothers of pre-school aged boys with autism and feeding difficulties.
The interviews focused on their experiences around mealtime and
mothering a child with a feeding difficulty. Data was analyzed using
thematic analysis and narrative methodology from an occupational
science perspective. Findings show that eating difficulties impact much
more than just nutritional status of these children. The entire
occupational life of the families is affected. Mothers‘ theories about how
to mother their children and priorities for intervention are also revealed.
1
Chapter 1: Introduction
This study explored five mothers‘ experiences of everyday life with
pre-school-aged boys diagnosed with autism spectrum disorder (ASD),
specifically related to difficulties with feeding and mealtime. The first
chapter details the path I have followed to arrive at this study and
provides a brief overview of the study. The second chapter describes the
literature available on this topic and the theoretical basis for the study
design and analysis. The specifics of the research design follow in the
third chapter. The fourth, fifth, and sixth chapters detail the stories of
the mothers interviewed for the study and the seventh, eighth and ninth
chapters explore specific themes related to mothering, occupational
science and autism that emerged from the data. The final chapter
explores the conclusions that can be taken from this work and lists
avenues for further exploration that are suggested by the findings of this
study.
Since childhood, I have been interested in the care of infants and
small children. I remember feeding my infant brother and being
fascinated by the process of how he learned to eat different foods. I
started babysitting for the children across the street when I was nine-
years-old. One of the primary duties of anyone caring for children is
2
making sure they are fed. In choosing my career, I knew I wanted to
work with young children. Once I discovered the variety of possible ways
to do that within occupational therapy, I knew I had found my career.
During my pediatric fieldwork experience at a center-based school for
children with disabilities, I was appalled by how little attention was paid
to the mealtime experiences of the children. All staff members were
required to do ―feeding duty‖ at lunch time every day and much of this
was a mechanical process of shoving various degrees of pureed food into
the mouths of resistant or unresponsive children. I was terrified by this
process and I imagined that the children were also. Mealtime had always
been such a social and important time for me and the neglect of the
experiential factors for these children seemed almost criminal. I started
doing some research and put together a presentation and guidebook
about feeding children with special needs. That work, presented to all
the feeders at the school, provided basic information that focused on
clinical skills for feeding children with structural, oral motor and
swallowing challenges that I saw as a path for beginning to improve the
mealtime experience for these children. From that point forward I was
interested in specializing in working with children with feeding
difficulties.
For the next several years I worked as a traveling itinerant
therapist in a variety of clinical settings, a few of which afforded me
opportunities to work on feeding and mealtime issues. When I settled
3
into working with early intervention and preschool-aged children I
realized that I had many questions that I was not finding answers to from
my mentors or the resources I had. This drove me to pursue a graduate
degree. One of the compelling reasons for choosing to come to the
University of Southern California was that I was offered the Maternal and
Child Health Fellowship which provided an opportunity to work on an
interdisciplinary feeding team and the prospect of taking the a
specialized class in sensory integration at Pediatric Therapy Network
(PTN) where I knew I would be able to refine my skills in treating children
with sensory integrative dysfunction. My practice grew by leaps and
bounds through both of these experiences. On the feeding team I worked
with dentists, psychologists, registered dietitians and occupational
therapists who were experts in the area of feeding. I found this to be
extremely refreshing as I had not had interdisciplinary mentorship in
this area of my practice before that time. Observing and engaging in the
fine-tuned analysis of the feeding experience from physical and
emotional/behavioral perspectives helped me to broaden my
understanding of what feeding is like for children and their families.
Unfortunately the treatment opportunities were limited there and took
place in a hospital based clinical setting and I felt as if my view was
limited by this very fact.
The sensory integration class provided me with a deep
understanding of the neuro-scientific and practical theory behind
4
treating sensory based difficulties, certainly a key factor in the feeding
experience for children, while affording me the unique opportunity to
have my pediatric practice skills observed and critiqued by experts in the
field. I went on to work in both of these settings after my internships
were completed and sought out treatment of children with feeding
challenges at each. Although I felt like I was doing good work, I craved a
more intimate understanding of families‘ experiences. In search of this
understanding, I moved to practicing at a private clinic in Pasadena
where I had much more freedom to interact with families. I was able to
treat in simulated home-like environments in the clinic, to visit families
in their homes and parental involvement in treatment time was
encouraged and expected.
During all of this experience, I was noting an increased presence of
children diagnosed with ASD on my clinical caseloads. Children with
this diagnosis were being referred to the feeding clinic with increasing
frequency and they made up the majority of my sensory integration
based cases at Pediatric Therapy Network. These children presented
unique challenges in both of these settings which were puzzling for the
respective teams. The specific social and sensory characteristics of
autism made many of our ideas about techniques for engaging children
in occupations, including participation at mealtime often ineffective. The
presenting problems in the feeding clinic were not the musculoskeletal
and oral-facial abnormalities that could be treated with proper
5
positioning and the adapted utensils that I had spent many hours
learning to make in OT school and had detailed in my early presentation
on feeding techniques at my fieldwork site. Instead these children with
autism were having difficulty at mealtime due to hyper- or hypo-
responsiveness to the sensory properties of food, difficulties with
attention and self-regulation that made participating in mealtime a
challenge, oral dyspraxia that made managing food in the mouth difficult
and intensely rigid needs for sameness and routine around all aspects of
mealtime. The challenges described by the parents were with children
eating extremely limited diets, displaying rigidity around eating routines
and resisting participation in family mealtime. I turned to the literature
for help in treating these difficulties but found very little in either the
popular or academic press. I knew there was a role for occupational
therapists to engage with these families. What more important
occupations were there than feeding one‘s children; than being able to
join one‘s family at the kitchen table for breakfast or lunch? I had
sensory-based techniques to help address the hyper- and hypo-
sensitivities, specific recommendations for working on praxis and even
social-emotional strategies for working on behavioral problems, but I felt
as if I wasn‘t getting the whole picture.
Throughout all of this experience with participation in the clinical
world of feeding and sensory integration treatment I was engaged in
doctoral classes in the Division of Occupational Science and
6
Occupational Therapy and work on Boundary Crossings
1
, a longitudinal
and ethnographic study of families of children with disabilities. My
exposure in the classroom to the ideas of occupational science and
through my research assistantship with Drs. Lawlor and Mattingly
awakened me to the complex nature of the everyday life of families and
the impact of social and cultural factors on everyday occupations. I
began to notice the limitations of the clinical understanding that I had
developed and to yearn for the kind of depth of understanding present in
this research that I could apply to my own practice.
I enjoyed this combination of practice and research immensely, but
this feeling of missing some of the story continued to bother me. My
interest in researching the mealtime experience of families grew from the
gaps I noted in my own knowledge as an occupational therapy
practitioner working with families of children with feeding difficulties and
the gaps I saw in the knowledge of my colleagues. Turning to the
literature provided me with technical knowledge about the feeding
process but few answers about what this complex experience was like for
families. Through my exposure to occupational science and the
Boundary Crossings project, I began to recognize the value of the pieces
of intricate stories from parents about the challenges and the joys related
to mealtimes that I was hearing. As Mattingly and Lawlor (2000) note,
1
Boundary Crossings: Resituating Cultural Competence (NIH Grant #2R01HD388 78
and Boundary Crossings: An Ethnographic and Longitudinal Study (NIH Grant
#R01HD38878)
7
―stories are powerful. They can help us, as researchers or healthcare
professionals, to understand those we seek to help in ways that nothing
else quite does.‖ (p. 12) As I was mentored in listening to and soliciting
stories I began to hear even richer stories and to long to have time to
explore them more deeply.
I listened to the mothers of the children I worked with in the clinics
tell of their everyday dilemmas and the complexities involved in feeding
their children. I sensed that a richer exposure to these stories would
both improve my ability to interact with the families I was working with
and better treat other children with feeding difficulties. One such story
that had a tremendous impact on me early in this process was told to me
by the mother of a young boy with autism. One day as we sat in a large
clinic room I casually suggested that part of her four-year-old non-verbal
child‘s difficulty with self-feeding might be behaviorally-based and
perhaps she needed to try waiting him out by refusing to spoon feed him
for a day or two. This child had demonstrated that he was physically
capable of bringing a spoonful of food to his mouth. I explained that he
had enough fat stores to be minimally impacted by not eating for several
days and that as long as he was drinking he would be fine. We had been
working together for several months and had developed a strong
relationship where she often commented that she valued my opinion and
the help I had provided to her family but after I made this comment she
looked at me incredulously. Tears welled up in her eyes as she described
8
how before she and her son had started coming to our clinic she had
tried exactly this method on the recommendation of her pediatrician who
had dismissed her concerns and told her ―if he is hungry enough he will
eat.‖ She was determined to follow this advice so she stopped offering
him his preferred foods and her son had not eaten for three full days.
Three days of excruciating mealtimes for her, her husband, and her son.
Both she and her son had cried themselves to sleep until she was no
longer able to bear it and fed him late on the third evening. As I listened
I heard that this story was about much more than a single incident. She
was telling me about her pain and conflicted feelings about what this
meant about her role in his feeding difficulties and even her status as a
good mother. This concept of the ―Good Mother,‖ the idealized mother
figure of greeting cards and afterschool specials (DeVault, 1991; Larson,
2000a, 2000b; Ruddick, 1995, p. 31), is one that I have often heard
invoked by parents in feeding treatment.
This mother said to me that she just wasn‘t ―strong enough” to let
her child go hungry as if this represented a serious fault in her
personality instead of a core value of caring for children. I quickly
realized that my casual suggestion was not at all feasible for this family.
I had not understood the possible impact of this suggestion on their daily
life, on her understanding of herself as a mother. Without this story, I
would not have been able to understand why she didn‘t follow my
recommendation. As we continued to explore why this child ate so few
9
foods and resisted feeding himself, I found that this mother had other
stories to tell that were equally valuable for shaping my treatment. Each
week she was eager to share a narrative about a specific meal, a new
accomplishment her son had achieved or an outing the family had taken.
I grasped that she was building theories about her son‘s behavior and his
way of understanding the world through the telling of these everyday
experiences. She was ―re-entering the rich emotional landscape of
powerful experiences by telling stories about them‖ (Mattlingly & Lawlor,
2000, p. 5) and was eager to share these stories with me so that I too
could understand the meaningful events in her day-to-day life. She was
interested in having me assist her by adding my clinical perspective to
the stories with which she was puzzling. She was helping me to better
understand the real-life world of her son and her family and was trying
to work out the areas that were puzzling to her by engaging in an
ongoing process of story creation.
The complexities of their everyday life and the possible meanings
behind the smallest acts showed up in the stories she told. As Bruner
has pointed out, narrative often points to what is most ―at stake‖ for the
teller (Bruner, 2002). During these sessions I often found myself
conflicted. I was working in a clinical setting and I was supposed to be
working on improving this child‘s oral motor and developmental feeding
skills. Was listening to these stories moving us towards his very specific
feeding goals? My instincts said yes, but I realized that I rarely had time
10
to hear the depth and detail in how these experiences played out. I
sensed that so much could be added to my practice by better
understanding what everyday life was like for this family and for many
others like them.
My purpose in doing this research was to achieve that depth of
understanding with families of children with autism and my hope is that
the information I present here will expand therapists‘ and scientists‘
knowledge of what real, everyday life can be like for families of children
with autism as well as to help other occupational therapists have a richer
understanding of the families with whom they work. Studying all of
everyday life for families is a very big project, a project that goes well
beyond the scope of a single dissertation so I decided to focus on a
smaller portion, one that provided an interesting and meaningful
example of the dilemmas and delights of everyday life, mealtime.
Feeding/Eating/Dining: Critical Occupations
For most families mealtime is a crucial part of the family
experience. Many families eat at least one meal together each day and
family routines are often shaped around feeding children. As an
occupational scientist and a certified feeding and swallowing specialist, I
went into this study seeking a deeper understanding of the experience of
mealtime in family life. In particular, as I stated above I was interested
in studying how having a child with autism affects this experience. My
11
own practice with families of children with autism had led me to see that
the diagnostic characteristics of autism present unique challenges to
children and families in everyday life and around mealtime and the
literature does not adequately address these challenges for families or
the professionals who work with them.
Feeding is an area that is particularly interesting for occupational
science. According to Zemke & Clark (1996), occupational scientists aim
to study the form, function and meaning of occupations. Some
occupations are inherently richer in meaning than others. Feeding a
family is one such occupation, rich in meaning due to the inherent
nature of the activities involved. Feeding a child is an activity that is
required to keep the child alive. It is linked to parenting and nurturing
and is deeply impacted by environment, culture, and biology. As one of
DeVault‘s (1991) informants in her landmark study of feeding families in
inner city Chicago said about her children ―You want them to eat good
things, so they develop nice strong bodies. And you kind of feel
responsible. It‘s one aspect of parenting‖ (p. 9). Feeding is an
occupation that is loaded with symbolic meaning. As such, it provides a
particularly interesting field of study for occupational scientists. It is
also an occupation that is never finished. Mealtime occurs multiple
times a day, every day of a child‘s life. For families whose children have
difficulty with eating, mealtime and feeding experiences can come to
dominate their days.
12
In this study, I delved deeply into what mealtime experience is like
for particular families through listening to the stories of these mothers
describing the day-to-day nature of feeding work and how it is entwined
with managing disability. I selected to study the occupations involved
with feeding a family with a child with autism due to my interest in the
work of women, my interest in occupational science and my clinical work
as an occupational therapist who specializes in working with families of
children with autism.
The Work of Feeding a Family
Feeding a family is a great deal of work. It involves providing
physical nourishment and creating a social and emotional experience.
To make these things happen in a coordinated and meaningful way, the
feeder, often, though not exclusively the mother, must complete a
multitude of tasks. Feeding a family involves much more than placing
plates of food in front of family members. It is made up of a ―diffuse,
vaguely defined set of tasks‖ that differs from household to household
(DeVault, 1994, p. 120). Children and adults must be fed, but the level
of preparation, food choices, and even location of eating (restaurant vs.
home vs. in the car) vary considerably. The work of feeding involves
provisioning, planning, cooking, negotiating family member‘s needs and
desires, monitoring nutritional status, facilitating social experiences,
monitoring children, and improvising when things don‘t go as planned.
13
This work is primarily though not exclusively done by women. It is part
of creating a family unit and a family experience. ―Feeding the family is
work that makes use of food to organize people and activities. It is work
that negotiates a balance between the sociability of group life and the
concern for individuality that we have come to associate with modern
family life‖ (DeVault, 1994, p. 78). The work that goes into creating
meaningful mealtime experiences is perhaps more intense when there is
a child with a feeding difficulty. In this study I have explored what this
work is like for mothers of children with autism.
Feeding vs. Eating vs. Dining:
In pediatric occupational therapy practice, feeding is a term that is
often used to describe how a child is fed and eats. In general
conversation, feeding usually refers to the act of providing food to
another and eating is the act of ingesting food oneself. Dining is a more
formal term and in common usage often is linked to eating out or eating
on a special occasion. In this study I follow DeVault‘s (1994) model and
use the word ―feeding‖ to focus on more than the physical act of
providing food to a family. In the interviews I explored planning,
provisioning, and managing all aspects of feeding. By this, I mean the
social, temporal, spatial aspects of mealtime, planning time, and
provisioning activities. My interest was in what mealtime looks and feels
like, the social experience for the family members and the work that goes
into shaping the experiences related to mealtime. Through qualitative
14
inquiry, I was able to further describe and define these terms as they
relate to families and to occupational science.
Autism Spectrum Disorder (ASD): A Family with a Diagnosis
In my clinical work with children with feeding difficulties I have
noted how significant an impact the diagnosis of autism in a family has
on parents‘ ability to feed their families. The Diagnostic and Statistical
Manual of Mental Disorders (American Psychiatric Association, 1994)
identifies autistic spectrum disorder (ASD) under a larger heading of
Pervasive Developmental Disorders (PDD). This heading includes five
interrelated disorders commonly referred to as autistic spectrum
disorders; Autistic Disorder, Rett‘s Disorder, Childhood Disintegrative
Disorder, Aspberger‘s Disorder and PDD Not Otherwise Specified. These
five categories differentiate between a wide range of symptom severity
and functional impact with differences in social skills (American
Psychiatric Association, 1994; Dunlea, 1996; Kanner, 1943; Ledford &
Gast, 2006; Zemke & Clarke, 1996). For the purposes of this work, the
word autism will be used to refer to this broader category of autism
spectrum disorders with more specific diagnostic labels used when
necessary.
Moderate to severe autism symptoms include significant
behavioral difficulties. These difficulties impact every area of a family‘s
life and much of family life develops around the needs of the child with
15
autism (DeGrace, 2004). Classical texts on autism list rigidity around
food preferences and although the current diagnostic criteria do not
include difficulties with eating specifically, the earliest descriptions of
autism featured it as a prominent aspect of the disease (Kanner, 1943).
The children with autism in this study often exhibited rigidity around
daily routines and frequently were unable to be flexible about any of their
daily activities. The treatment suggestions for autism passed from family
to family and occasionally suggested by professionals often involve
following special diets and taking supplements. Many children with this
diagnosis spend as much as 40 hours per week in specialized treatment.
I found that these constraints have a strong impact on the family in
many ways and may be particularly evident when looking at the families‘
mealtime experiences.
Throughout most of my career as a pediatric occupational
therapist I have worked with children with autism. Many of them had
extremely limited diets that threatened their physical health and created
a multitude of difficulties for their families in regards to feeding.
Conducting an in-depth exploration of what the occupation of feeding
involves and what it means to these families has allowed me to describe
one part of the impact on the family of the child‘s special needs. I hope
that my interpretation will help provide a voice for the children and
families who otherwise would not be able to share the information about
their lives with professionals and academics. As a working therapist, I
16
was hungry for descriptions of how family life might be impacted by this
diagnosis and found them conspicuously absent from the available
literature and as a researcher, I hope the findings of this study will be a
begin to address this gap in the literature and to provide other clinicians
with such resources.
Relation to Occupational Science
This research proposes to contribute to the body of knowledge of
occupational science by enhancing the understanding of what the
occupation of feeding one‘s family looks like when it is impacted by
having a child with autism. As Yerxa asserted, ―individuals are most
true to their humanity when engaged in occupation‖ (Yerxa, 1990, p. 15).
To achieve a deeper understanding of human experience, it is
particularly important to explore the nuances of this engagement in
different contexts and with different people.
Mothering is an area that has presented particular interest to
occupational scientists and feeding is a key aspect of mothering. Within
the field of occupational science, there has been much written about
mothering but there are few studies of feeding.
Eating and feeding children are almost universally social
experiences and as such provide us with a window into how occupations
are created and carried out by multiple people. Occupations done by
multiple people have commonly been called co-occupations within the
field of occupational science (Zemke & Clark, 1996). By choosing to
17
study mothers of children with autism, I hope to expand the
occupational science knowledge base of what these experiences might
look and feel like and how we as occupational scientists might best
support these families and the professionals working with them. I hope
to be able to build theory that will help generate better understandings of
family life and the mothering practices of the women I will interview.
As discussed above, the occupation of feeding children is one rich
in symbolic meaning. It is also a biological necessity. By bracketing
mealtime and choosing to center it in my interviews and analysis, I was
able to create an understanding of what the occupations involved in
mealtime mean to these mothers and how they in turn create meaning
and engage with symbolism in a broader world of everyday life for these
families. This knowledge will help me to expand the knowledge of
occupation in general and mothering, child-care, mealtime, feeding, and
living everyday lives with children with autism in particular. By
achieving a deep richness of data through the use of qualitative
methodology, I have been able to generate an understanding of what the
everyday lives of these mothers entails. In this paper I offer an
interpretation of the information gathered colored with my own
experiences as a doctoral student, therapist, family member, and feeder
of small children.
There are few studies looking directly at the experience of families
with children with autism and their experience in day-to-day family
18
activities. The one study I could find that most closely approximates the
issues that I will examine in this research is a very preliminary and
poorly executed examination of the topic. DeGrace (2004) used semi-
structured interviews with five families with children with severe autism
to explore what these families‘ experiences of ―negotiating family daily
life‖ were like (p. 543). She interviewed each family once for an average
of two hours and used the questionable sampling method of choosing the
families she interviewed from those that she had worked with as a
clinician. Her interpretation begins to skim the surface of what family
life is like, but does not provide the depth or richness needed to truly
understand the phenomena that a family is experiencing. Her
conclusions focus on the negative experiences the families have (a
common troublesome assumption about family life with children with
disability) (Lawlor & Mattingly, 2009) with very little support from the
data she provides making it difficult to use this study as a window into
the worlds of families with children with ASD.
Relation to Occupational Therapy
Occupational science is an academic discipline whose purpose is
both to explore the nature of occupation and to nurture the practical
discipline of occupational therapy (Clark et al., 1998). As stated above,
my interest in this study has grown out of the gaps I have noted in my
own knowledge as an occupational therapy practitioner working with
19
families of children with feeding difficulties. Turning to the literature
provided me with few answers about what this experience was like for
families. My purpose in doing this research was to create a forum for
beginning to achieve that depth of understanding with these mothers
that will expand the knowledge of the occupation of feeding and how it is
affected by having a child with autism as well as to help other
occupational therapists have a richer understanding of the families with
whom they work.
Research Questions
The questions that guided this project were as follows:
1. How do mothers of pre-school children with autism spectrum
disorder perceive and narrate their experiences around having a
child with a feeding difficulty?
2. What cultural resources do these mothers access in order to get
information about mothering, autism, mealtime and having a child
who is difficult to feed?
3. How do these mothers describe the impact of having a child
diagnosed with autism on family activities, especially around
mealtime?
4. How do these mothers describe their experience of family life
especially around mealtime and feeding their families?
5. How do these mothers understand the social nature of the
occupations related to feeding their families and mealtime? How
20
can occupational scientists describe and understand the way
family members work together in the creation and carrying out of
these occupations?
6. Are these mothers‘ identities affected by having a child who has
difficulties with eating? If so, how?
7. How can occupational scientists better describe and understand
the occupations related to mealtime and feeding children?
Limitations of the Study
Though I was as thorough as possible in completing the research
described in this document, there are of course limitations. Some of the
limitations I have identified include:
The sample size was small and generalization was not a goal of the
study. Therefore the findings, though useful in describing the
families involved and for theoretical development, are not suited to
making general statements about all mothers of children with
autism and feeding problems.
The focus on mothers as interview participants limit what can be
said about the perceptions of fathers, children, other caretakers
and families in general.
All of the children in the study were of pre-school age. Feeding
infants and/or older children may provide different challenges that
are not be addressed by this study.
21
By restricting the sample to mothers of children diagnosed with
autism spectrum disorders a desired specificity was achieved.
However, this limits what can be said about mothering children
with difficulties with feeding in general.
Cultural difference related to ethnic diversity and socio-economic
status was considered in sampling, data collection and analysis.
Diversity in these and other areas was sought (as detailed in
Chapter 3), but due to the small size of the sample and limitations
of researcher access to diverse populations, only a limited amount
of diversity was achievable. Mothering and feeding occupations are
firmly situated in the cultural context of each family and are
therefore significantly influenced by these differences. Although
this was attended to in this project, these areas were not the focus
of this study.
Due to the nature of the population of children with autism being
80% male, only mothers of boys were successfully recruited to
participate in this study.
22
Chapter 2: Literature Review
Introduction
Autism is an area that has been much studied and written about
during the last decade. The most recent data from the Center for Disease
Control (2007) reports that autism was found in about 1 in 150 8-year-
old children across the United States and that it crosses all racial, ethnic
and socioeconomic groups. The National Institute for Child Health and
Human Development (NICHD), the major governmental funder for
research in autism, supports two major research networks that have
centers across the United States. The Collaborative Programs of
Excellence in Autism Network (CPEA) which focuses on the causes of
autism (genetics, environmental factors, immunological factors),
diagnosis, early detection, behavioral and communications
characteristics and treatments and the Studies to Advance Autism
Research and Treatment (STAART) Network which funds 8 research
centers that focus on the causes, diagnosis, early detection, prevention
and treatment of autism. Private agencies that fund research in autism
(e.g.—Autism Speaks, Cure Autism Now) have similar priorities and the
available literature around Autism seems to closely reflect this focus.
Although these are important and worthy areas of study, one area that
seems to be neglected in these lists is the family experience. There is a
great deal of literature focused on maternal depression (Carter, Martinez-
23
Pedraza, & Gray, 2009; Schwichtenberg & Poehlmann, 2007) and
describing and quantifying parental stress (e.g., Estes, et al., 2009;
Schieve, Blumberg, Rice, Visser, & Boyle, 2007; Wolf, Noh, Fisman, &
Speechley, 1989) and while this literature is useful, it makes
assumptions about what family life is like and what the challenges are.
After an extensive review of available literature, the only detailed
phenomenological descriptions of everyday family experience that I have
found are the first person narratives written by parents (Cutler, 2004;
Iversen, 2006; C. C. Park, 1967), one interview based article (DeGrace,
2003) with serious methodological limitations as detailed later in this
chapter and one questionnaire based report of parent‘s experience with a
specific intervention program (K. R. Williams & Wishart, 2003). In order
to fully understand and best serve these families, understanding what
their everyday experiences are like is absolutely crucial.
One area of everyday life that gets very little attention in the autism
literature is mealtime. Mealtime is a good representation of everyday life,
an ideal place to explore the social nature of occupation and to witness
the impact of autism on a family‘s daily routine. Surprisingly in book
after book on autism, whether it is focused on treatment or research;
mealtime, eating, food and feeding issues get little or no mention (e.g.,
Huebner, 2001; Moldin & Rubenstein, 2006; National Research Council,
2001; O'Brien & Daggett, 2006; Volkmar, 2005). The nature of this
study is that it sits at the intersection of mealtime, autism and
24
mothering. All three of these issues are extensively covered in the
literature and yet the place where they all come together is practically
absent. This leads to a challenge in developing the literature review to
support this study and perhaps to an unusual literature review chapter
in this dissertation.
To answer this challenge, I begin by exploring what literature there
is on mealtime and autism. I then discuss the intersections of the
autism phenotype with feeding problems and the possible areas of
impact on everyday experience. This is followed with a discussion of the
unique challenges faced by mothers or primary caregivers when the
feeding relationship is challenged and then a discussion of how this fits
within the broader literature of occupational science around autism,
mealtime and mothering. I will finish this chapter with a discussion of
the literature that supports my methodology, sharing why I believe using
narrative based interviewing is best suited to achieving an understanding
of what these everyday experiences are like for the mothers involved.
Mealtime and Autism: Clinical Categorization, Popular Literature,
and Intervention Techniques
The central features of Autism Spectrum Disorders are
impairments in socialization, verbal and non-verbal communication and
restricted and stereotyped actions (DDS Guidelines, 2002). Each of these
areas of impairment has potential to impact a family‘s experience at
25
mealtime. As noted above, the bodies of literature related to autism and
to mealtime are both very large, but the intersections between them are
few. Autism has been studied in many different ways from imaging
studies of the brain‘s of people with autism (e.g., Aylward, et al., 1999;
Bauman & Kemper, 2005; Dalton, Nacewicz, & al., 2005; Nacewicz, et
al., 2006; Perry, et al., 2001) to ethnographic inquiries into the worlds of
non-verbal children with autism (e.g., M. M. Park, 2005; Spitzer, 2003).
Mealtime has been researched in equally diverse ways from the
contribution of mealtime routines toward children‘s body compositions
(e.g., Klesges, Stein, Eck, Isbell, & Klesges, 1991) to the conversational
patterns and meaning making that occur during meals (e.g., Ochs,
Smith, & Taylor, 1989). While all of these areas are interesting and
support a better understanding of autism, they tell us very little about
the content of this study and so will not be covered here in detail though
they will be consulted as needed during the iterative process of literature
use during data analysis.
In reviewing the literature at the intersection of autism and
mealtime, I have identified three main categories.
1. The first is clinically based and looks at the technical aspects
of the feeding difficulties found in children with autism (e.g.,
Ahearn, Castine, Nault, & Green, 2001; Archer & Szatmari,
1991; Bowers, 2002; Cooke, Carnell, & Wardle, 2006).
26
2. A small body of popular literature both in print and online
devoted to special diets (Adams, 2007; Autism Web, 2008;
Kyle Westphal Foundation, 2005; McCarthy, 2007; Riegel,
2006; Talk About Curing Autism, 2008) and techniques for
parents to use in getting their children to eat (e.g.,
Ernsperger & Stegen-Hanson, 2004; Legge, 2002)
3. Studies of intervention techniques for children with feeding
difficulties (e.g., Ahearn, 2003; Bledsoe, Myles, & Simpson,
2003; Bristol & Shopler, 1993; Collins, et al., 2003).
Each of these categories has value, and as I‘ll explore below, each has
contributed to the foundation upon which I propose to create this study
of family experience.
Clinical categorizations. The studies that attempt to describe and
categorize the feeding and eating difficulties that children with autism
often experience are helpful for validating the presence of feeding
difficulties families may have when raising a child with autism and
provide a glimpse into what this experience might be like, but these
studies have little or no information on the experiential aspects of family
life. An extensive review of feeding literature found seven descriptive
studies related to autism all of which noted substantial feeding problems
in children with autism spectrum disorders. As far back as 1979,
DeMyer reported that 94% of parents of children with autism reported
that their child had feeding difficulties. One of the most detailed of these
27
studies and the one I will focus on here due to its strong descriptions of
the nature of the feeding problems these families face was done by
Cornish (1998), a dietician. She reported on the diets, eating behaviors
and growth patterns children aged 3-9 with autism. The continuum of
eating behaviors reported informs this study by presenting the
complexity of feeding challenges that these parents of children with
autism experienced. Though the study is small and the sample most
likely skewed toward those who had feeding challenges, all of the parents
reported that they were currently experiencing feeding problems with
their children or had in the past. Most of the children preferred
repetitive patterns of food with meals and individual foods repeating
frequently and all parents reported problems with introductions of new
foods and food refusal. Nutritional deficits, lack of variety and difficulties
handling any changes in patterns or routines were all significant
problems (Cornish, 1998). Many of the children refused to eat in a
different location making eating out or at family or friends‘ houses
impossible and ―often meals spanned hours and the child got up and
down from the meal and returned frequently to eat some more‖ (Cornish,
1998, p. 504). Parental anxiety and stress is implied in her statement
that ―some children ate so few foods that parents were relieved if their
child would eat these at any time of the day and therefore would prepare
the food to suit in order to encourage them to eat‖ (pp.504-506). She
reports that all of the children in this study were particular about the
28
form of the food (e.g.,-only breaded chicken) and many would eat only
one specific brand of a retail product. These children were also affected
by the sensory properties of foods. Some would eat no ―wet‖ food or food
with sauce or liquid on it and other children were concerned about the
color of food and restricted their diets based upon this.
Obviously this litany of problems reported by parents represents
significant differences from how typically developing children, even
―picky‖ children eat and as such, present unique challenges for parents
and families of children with autism. These difficulties are
representative of the ones I have seen in children I have worked with in
my clinical practice and those detailed in other literature on this topic
(Ahearn, et al., 2001; Buckley & Newchok, 2005; Collins, et al., 2003;
Schreck & Williams, 2006; Schreck, Williams, & Smith, 2004). I
hypothesize that this must present intense challenges in both actual
mealtime and how food shopping, meal preparation, and planning occur
for families. The impact that all of this has on the daily life of families
has to be severe. However, the Cornish study (1998) and the others like it
merely report these facts and figures leaving us to create suppositions
about what the impact might be on family experiences, a significant
blind-spot in the literature available to families and professionals.
Popular literature. The second area of intersection in the
literature focused on mealtime and autism is the small body of popular
literature devoted to assisting parents in dealing with their child with
29
autism‘s feeding challenges. This area is dominated by two categories,
the first is devoted to special diets and the anecdotal evidence for the
improvements that they may provide. This area has a small print section
(McCarthy, 2007; Riegel, 2006) and large representation on the internet
with multiple web-sites and message boards devoted to different dietary
plans where parents and professionals with various degrees of scruples
and research support recommend a variety of diet based interventions for
autism (e.g., Adams, 2007; Autism Web, 2008; Kyle Westphal
Foundation, 2005; Talk About Curing Autism, 2008). For example, John
Adams condenses some of the biomedical recommendations for
treatment of autism on the Arizona State University Autism/Aspergers
research website as follows:
Follow in this order:
1. Improve quality of diet. Eliminate junk food. Increase
intake of vegetables, whole fruit, and protein, while limiting
sugar/starch intake.
2. Minimum 3-month trial of total avoidance of casein and
gluten.
3. Add digestive enzymes, vitamins, minerals.
4. Test thyroid function and iodine level – consider thyroid
hormones and/or iodine
5. Test gut function: Comprehensive Digestive Stool Analysis
and urinary organic acids, using both tests to check for
intestinal yeast/bacteria. If necessary, treat with antifungals,
probiotics, and possibly antibiotics. Try low sugar/starch diet,
and consider Specific Carbohydrate Diet to starve
yeast/bacteria.
6. Test for amino acids, and add if necessary.
7. Test plasma sulfate and glutathione; supplement if low.
8. Assess heavy metal toxicity by chelation challenge, and treat
if high.
30
9. Try additional nutrients (Essential fatty acids, DMG/TMG,
methyl-B12)
10. Try mega-B6 with Magnesium (8 mg of B6 per pound
bodyweight, and 4 mg/pound bodyweight of Magnesium),
especially if kryptopyrole test high.
11. Test for viral infections, and treat if necessary. (Adams,
2007)
All but three of these recommendations (numbers 4, 8, and 11) involve
modifications to the diet through adding or removing certain foods or
adding dietary supplements. In my clinical experience getting children
with food selectivity to accept supplements (even in liquid form) can be a
tremendous challenge due to their resistance to accepting anything that
is not one of their preferred foods and their ability to detect even the
smallest changes in their preferred foods.
The second item on that list, the Gluten-free/Casein-free diet is
perhaps the most common and well covered recommendation on the
internet with over 30,000 results found in a recent Google search for
―Gluten-free/Casein-free diet Autism.‖ Websites such as Kyle‘s
Treehouse (Kyle Westphal Foundation, 2005) created and maintained by
a parent of a child with autism provide justification for specific diets
such as the Gluten-free/Casein-free diet: ―The diet is based on the idea
that children with autism are more likely to have allergies to gluten (the
protein in wheat, oats, barley, and rye) and casein (the protein in milk).
By removing these proteins from a child‘s diet, brain function is no
longer impaired by the proteins.‖ The site goes on to say that many
families see ―a big difference‖ after trying this diet for several months
31
though the change to the diet is ―challenging for some families‖
(http://www.kylestreehouse.org/Gluten_Free.cfm). Claims such as
these are tempting for families to believe although there is little research
supporting their veracity.
There are also sites such as the one hosted by Jenny McCarthy‘s
organization Talk About Curing Autism (TACA) (http://gfcf-
diet.tacanow.org/) that give specific tips on how to read ingredient labels,
where to find recipes, where to buy foods for special diets, how to cut
costs associated with following the special diets and even how to manage
a kitchen that needs two sets of appliances to eliminate cross-
contamination from foods that other family members are eating. These
recommendations hint at some of the modifications that families must be
making in order to follow these dietary recommendations.
The second area of popular literature consists of a few resources
that describe feeding and eating challenges and provide ideas about
solutions (e.g., Ernsperger & Stegen-Hanson, 2004; Legge, 2002). This
too is well represented on the internet where parent‘s stories, both good
and bad, abound and professionals with varying degrees of expertise
recommend solutions such as ―Be aware when a child starts to reject a
food, and nip it in the bud‖ (Ruddy, 2007) or ―Don‘t feed him. Leave him
go hungry as long as you can before introducing a new food.‖ (Pepperfire
on Wrongplanet.net, 2008). In fact entire threads of support groups at
places like Wrong Planet are devoted to providing suggestions for parents
32
on getting their children to eat a wider variety of foods (Wrong Planet,
2008).
As for the popular press books, the information they contain,
though aimed primarily at parents, again confirms the wide variety of
challenges that these families are facing. Legge (2002) describes her own
family‘s experience with a child who is an extremely restrictive eater and
informally surveys one hundred other families with food challenges. Her
descriptions though filled with humor are heartbreaking. For example,
her description of how her inability to feed her son rocked the very core
of her belief in herself as a mother speaks to the intensity of this
experience:
From the beginning Harry had a very casual attitude to
sustenance. He was placed on formula milk at a relatively early
stage in the proceedings, though I‘d been a big advocate of natural
methods prior to the birth. This earth mother attitude was soon
knocked out of me when I encountered nothing but resistance at
feeding times. I knew all the textbook reasons for breast feeding: a
greater bond between mother and child, the building up of
antibodies towards infection, the presence of active enzymes and
live cells in breast milk which help a baby to thrive. And, as a
bonus, he‘d save his mother some hard-earned cash. The only
drawback was that nobody seemed to have explained these
benefits to Harry. Faced with overwhelming opposition, I
eventually gave up, shoved a bottle of Cow & Gate formula milk in
his direction and castigated myself daily for being a failure as a
mother (Legge, 2002, p. 25).
Intervention techniques. The third intersection, as noted above,
occurs around the studies of intervention techniques for children with
feeding difficulties (e.g., Ahearn, 2003; Bledsoe, et al., 2003; Bristol &
33
Shopler, 1993; Buckley & Newchok, 2005; Coe, et al., 1997; Collins, et
al., 2003; Gentry & Luiselli, 2008; Luiselli, 2006; Paul, Williams, Riegel,
& Gibbons, 2007; K. E. Williams, Hendy, & Knecht, 2007). These studies
focus on clinical measures to assist families in getting their children to
eat a wider variety of foods or to stop some of the atypical behaviors that
are limiting their ability to participate fully in the mealtime experience.
Many of these are single subject design studies which focus on the
efficacy of specific techniques for acquisition of specific skills around
eating or mealtime and most use behaviorally based methods for
intervention. These studies provide little of use for understanding
caregivers‘ experiences relating to mealtime. In fact, caregivers are rarely
mentioned in these studies except in how they are able to support the
implementation of intervention or in how to train them to implement the
methodology for intervention.
Mothering Children with Autism: Intensity, Protection and
Improvisation
“Examining mothering in the extreme affords unique insights. It provides
the opportunity to critically examine taken-for-granted assumptions about
mothering.” (Ledford & Gast, 2006)
Intensity. Mothering of children with special needs has been noted
to be both prolonged and more intense than typical mothering (Cronin,
2004). Besides just the practical concerns of the impact on mealtime,
34
there is also the concern mothers have for the long-term impact on their
child‘s health and well-being and the distress that comes with not being
able to adequately feed their child. Parental concerns about nutrition for
children with autism are well founded. One recent case study presented
by (Uyanik, Dogangun, Kayaalp, Korkmaz, & Dervent, 2006) illustrated
how severe food restrictions can be and that the consequences can be
devastating. This article describes a case where a child with autism
developed vision loss and corneal ulcer (a horribly painful condition) due
to a severe vitamin A deficiency. This child had eaten only potato chips
and water for four years. What is noticeably absent from this article is a
discussion of the impact on the family and the failure of the healthcare
system that let this progress to such a level. The authors note that this
level of vitamin deficiency is usually only found in children in the third
world but has been reported three times in children with autism. They
hypothesize that other vitamin deficiencies with less noticeable
symptoms may also be resulting from the severe food faddism noted in
some children with autism and suggest that in particular essential amino
acids may be missing causing deficits in brain development (Uyanik, et
al., 2006). Another study showed that boys with autism had significantly
lower metacarpal bone thickness than their typically developing peers
and that the bone thickness in those who were on casein restricted diets
(a common nutritional therapy for children with autism) was even lower
putting them at increased risk for fractures (Hediger, et al., 2007).
35
Feeding behavior and difficulties with eating are often not treated until a
child shows a significant loss of weight or failure to grow, but lack of
intervention for feeding difficulties may lead to abnormal growth patterns
later in life, higher risk for damage to bones and joints, and more subtle
nutritional impacts on learning, behavior, and development. With the
stakes this high, of course mothers are concerned.
To illustrate these stakes I have chosen to use several biographies
written by mothers of children with autism. The rich detail and
descriptions of everyday life make these first person stories ideal for
illumination of what mothering might be like for these women. As Riegel
(2006) points out, these mothers may not be MD‘s or PhD‘s, but they
have children with autism and ―this is an experience and an education
[they] live and fight for every day‖ (p. 11).
Protection. From the very beginning of their suspicions that
something is wrong with their children, this intensity inherent in
mothering children on the autism spectrum provokes a need for
protection. Ruddick (1995) notes that a core feature of mothering is the
protective love that mothers feel for their children; ―mothers fight their
babies‘ diseases and soothe their emotions. Nature with its unpredictable
varieties of poisons, diseases, germs, fires, tornadoes, floods and
‗accidents‘ is often an antagonist whose effects are countered with
various strategies from vaccinations and caps on poisons to tornado
shelters and fire drills‖ (p. 76). Unfortunately there is no known
36
vaccination, cap, shelter, or drill that can prevent or keep out autism. In
these first person narratives, mothers feel the threat yet they are
powerless to stop it. These fears are powerfully articulated. As one
mother explains:
It was his mind they came for. They came to steal his mind. Before
anyone gave it a name, even before I knew what it was, I knew it
was in our house. I can‘t say exactly how I knew. Except that I
could feel it. Not that I wanted to. Believe me. They were very, very
dark things. And there was no way to get rid of them…Dov was
only a baby and something was trying to steal him away. Sooner
or later, I knew I would catch them swirling above his crib. I knew
that was what they did whenever I accidentally fell asleep (Iversen,
2006, p. xiii).
She is not alone in naming this faceless fear. Another book, another
mother‘s words echo the darkness and the fear of a threat to her child
that she is powerless against.
As you grow up, most get the idea in their mind of being invincible.
At least that is how I felt. Nothing bad would happen to me. I did
my part in the community. I worked in a nursing home and
helped people. I was safe. Evil, however, takes on many forms…I
was dealing with a faceless monster, one that did make it out from
underneath my son‘s bed. No amount of nightlights or lullabies on
the Playskool™ radio could change that (Riegel, 2006, p. 29).
These statements are very dramatic. This drama, this intensity in the
need to protect perhaps comes from the very nature of autism itself. This
spectrum of disorders is poorly understood and the methods of fighting it
are diverse and vaguely defined. The research on treatment methods is
ambiguous at best and there are no simple answers. This can lead to a
37
deep sense of despair for mothers. As Iversen (2006) puts it, ―if he had
cancer at least we would know what to do‖ (p. 14).
This intensity and need for protection is also influenced by the
social impact of having a child with autism (discussed in more detail
later in the chapter), the impact upon the relationship between mother
and child and other family members. The effect on mothers in having a
child who is difficult to parent is profound.
But what of the identity of our child who, we‘ve just learned, is
autistic? A child whose take on the world physically, socially and
emotionally is distorted by a sensory scrambling neither we nor the
doctors fully understand? Is that why she can‘t speak? Can‘t bear
to be touched? How will we talk to each other? How will we live
without touching each other? My baby who can‘t bear to look into
my eyes? And here‘s the catch. A baby needs a mother to know
she‟s a baby. But a mother needs a baby to know she‟s a mother.
The sensory scrambling facing my child is reinforced by the
emotional scrambling facing her parents. When the usual
responses can‘t grow, consciously and unconsciously, a whole
family is changed [emphasis added] (Cutler, 2004, pp. 166-167).
Improvisation. Though this intensity and need for protection must
be very difficult, these mothers are not limited by these challenges, for
these mothers go on in the face of despair. In the face of this confusion
and lack of a clear path forward, they improvise and ―often engage in
complex non-normative care giving routines over extended periods that
require careful modifications of daily family routines to successfully
accommodate the child with special needs‖ (Larson, 2000b, p. 271).
This protective love that Ruddick (1995) noted will not let mothers just
sink into the despair though they may be living their lives on the ―edge of
38
it‖ (Iversen, 2006, p. 59). Again mothers‘ own first person accounts can
illuminate how this process works. Culter (2004), the mother of well
known author and adult with autism, Temple Grandin, uses an example
of a mother pheasant acting wounded to protect her young to illustrate
her own move into advocacy and actively fighting against the darkness
that autism brought into her and her child‘s life:
In the meadow, a mother pheasant flutters in front of us trailing
her wing in the long grass to fool us into thinking she‘s wounded,
enticing us to catch her, leading us further and further from her
nest in the clover where her young are hidden. I feel a sudden love
for her this soft green morning. She keeps on with her trick,
dragging her wing, improvising a wound, risking her safety for the
safety of her young. To Hell with Bettelheim—and diagnosis—and
myth! I, too, will improvise for the safety of my child (Cutler,
2004).
For these families, everyday life is full of these improvisations. They
come in ways of playing with a child, of dressing, of interacting at the
most basic level. Mothers search for these moments and find them, find
hope, find the opportunities to ―know she‘s a mother‖ (Cutler, 2004, p.
167). One example of such a moment comes early in Temple‘s
development at a moment when Cutler has almost given up. Cutler is
playing the piano as Temple shreds newspaper on the floor nearby.
Again, I tell myself that children have to find their own playthings,
that I mustn‘t always be the one to instigate the game. Yet she
looks so forlorn, sitting there absorbed in her tattered plaything,
sooty with newspaper ink, like a slum child nobody cares for. My
pretty baby with her blue eyes and blonde curls, she who would
prefer that I leave her alone. The calm, eerie snub cuts deep. And
so we neglect the other. Isolated, numb, we play it safe: I in my
world; she in hers. But what is her world? I turn back to the Bach.
39
I‘m not very good at it, but it‘s better than nothing. She hums.
She‘s humming the Bach (Cutler, 2004, p. 19).
This passage highlights an unusual improvisation, a tenuous moment of
connection, an atypical way in which this mother and child are able to
share some part of their world, a moment that Cutler remembers fifty
years after it happened. Temple is unable at this point to acknowledge
her mother, but she shows she is present, shows she is listening by
humming the tune that Cutler is playing and Cutler is able to adapt her
expectations of typical social engagement to include this unusual
opportunity. Children with autism spectrum disorders often have
unusual ways of connecting to the world of other people and their
mothers have to learn these unusual ways and embrace these atypical
moments.
Park (1967) uses the metaphor of laying siege to describe her
method of connecting with her child with autism. ―We had no choice. We
would use every stratagem we could invent to assail her fortress, to
beguile, entice, seduce her into the human condition‖ (p. 12). These are
profound improvisations in the art of mothering, ones that Ruddick‘s
(1995) theory of maternal thinking fails to adequately address.
Mealtime is a prime area for such improvisations. For example,
Cornish (1998) tells of parents‘ efforts to introduce new foods by hiding
them in preferred foods and of how children become ―experts in detecting
the hidden foods‖ (p. 506). Parents create further modifications by
40
setting up opportunities for peer modeling and food play outside of
mealtime to facilitate new food introductions. As Janicke, Mitchell and
Stark (2005) note, convincing children to eat and to eat well is a
challenge for all parents but when a child has a chronic illness or
disability that may present specific nutritional requirements or include
behavioral or physical barriers to eating, the challenge becomes even
more significant and the strategies parents use become even more
unique.
Returning to our first person narratives, we can see how the
everyday occupations around mealtime for children with autism need to
be modified to accommodate the child‘s needs. ―We popped Dov into a
bubble bath with some beads or blocks to stim on and headed to the
kitchen to make him five or six foods, hoping he would eat one of them
for breakfast‖ (Iversen, 2006, p. 217). This multiple food preparation, an
improvisation of typical mothering behavior happens multiple times a
day. It is part of everyday life for this family.
Though these first person accounts provide rich examples of the
modifications of everyday life that mothers have to make, they do not
create theory that can be used by scientists and practitioners interested
in working with these families. Outside of the few first person accounts
there is not a good view in the professional literature of what everyday
life with children with autism spectrum disorders is like for families and
for mothers. The profound improvisations that make their everyday life
41
possible are noticeably absent from most available descriptions of
mothering. I hope my interviews with these five mothers about their
experiences of feeding children with autistic spectrum disorders at
mealtime can begin to fill an important part of this gap.
Autism Spectrum Disorders (ASD) and Sociality
To understand the everyday life of families we must first
understand some more about the unique characteristics of autism
spectrum disorders. Since feeding is such a social activity, the social
differences commonly associated with ASD may have particular impact
on this occupation. Lord (1993) uses the categories of sociability (broken
down further into motivation and approaches, imitation, and social
knowledge), attachment, behaviors related to social success (play and
adaptive skills) and emotional understanding and expression to describe
the social difficulties of children with ASD. ―While diagnostic criteria
have included descriptions of a ‗pervasive lack of social awareness‘ in
autistic children, a simple-minded conceptualization of the autistic child
as having no social attention, interest or motivation has generally not
been supported by research or clinical reports‖ (Lord, 1993, p. 63). She
describes the differences that are found as ―attempts to avoid direct eye
gaze or auditory input,‖ ―infrequency of attempts to attract other people‘s
attention,‖ and ―specific deficits in joint attention‖ (Lord, 1993, p. 63).
These differences all provide challenges to mothers of children with
42
autism at mealtime and deficits in joint attention can be particularly
difficult to the mealtime experience. In my clinical experience I have
noted the difficulty of many children with a diagnosis of autism to
become and stay engaged at mealtime. In this study I hope to be able to
describe how families deal with these social differences and their impact
on mealtime. How do these mothers create the interwoven occupations
between child and family members that usually go along with feeding
time and how do they adapt when these interwoven occupations may or
may not be sought out by their child?
Occupational Science
My knowledge of occupational science and feeding provide me with
an ideal perspective from which to explore and theorize about the
distinctly under-theorized area of mother‘s perspectives around mealtime
with a child with autism spectrum disorder. As noted earlier in this
chapter, mealtime can be looked at from an array of disciplinary
perspectives. From a nutritional and medical perspective, mealtime is
primarily about ingesting nutrients. Meals provide essential energy
necessary to life. From an anthropological perspective, meals and food
can be seen as rituals and cultural events and many disciplines have
studied these aspects of mealtime in great depth. Yet after reading much
of this literature, I have discovered that due to the lack of intersection
with the literature around autism and disability, there remain serious
43
limitations for understanding the experiences of families with a child
with autism around mealtime. The challenges presented by the social
and sensory-based difficulties that children with autism exhibit around
mealtime are such that they must impact mother‘s perception of
mealtime. As noted above my particular research will focus on the
occupation of feeding and the mother‘s experiences related to that
occupation. To understand this I must blend together the knowledge I
have plucked from other disciplines in my work as an occupational
therapist and study as an occupational scientist.
Occupational science is a broad field interested in many aspects of
human occupation. As noted in the first chapter, mothering is an area
that has presented particular interest to occupational scientists (Lawlor,
2004; Llewellyn & McConnell, 2004) and feeding is a key aspect of
mothering. Occupational Science as a field has focused on the ―need for
understanding the incomprehensible complexity of actually being a
mother under differing demands and levels of complexity‖ (Yerxa, 2004,
p. vii) and as noted above, the levels of demand and complexity involved
in mothering a child with autism and feeding difficulties are certainly
high.
Co-occupation. One area of mothering that has been looked at
extensively within the field of occupational science is co-occupations. A
study of mother‘s experiences of feeding a child with autism cannot be
done without asking questions about how we understand how people
44
engage in occupations together. By its very nature family mealtime
involves more than one person, for one person does not make a family.
Often when the social nature of occupation is discussed, the unit of
analysis centers around two people and the idea of co-occupation (e.g.,
the mother infant dyad in: Dunlea, 1996; Fraits-Hunt & Zemke, 1996)
The mother‘s occupations of managing the home play objects and
spaces for the infants are not solitary, or even parallel or shared,
but a dyadic interplay between the occupations of the mother and
those of the infant and toddler. Thus the mother‘s occupations
require and affect the child‘s occupations. Co-occupations can be
face-to-face interactions, such as a mother and infant turn-taking
in peek-a-boo play. They can also occur in alternations linked only
in time and space, such as the daily pattern of the toddler carrying
toys from the toy box all over the house and the mother returning
them to the toy box at the end of the day. The co-occupational
nature of maternal work and infant and toddler play is especially
indicated by the way in which one person‘s occupations influences
those of the other: The child‘s emerging mobility changes the
mother‘s management patterns, and the mother‘s actions in
choosing toys and allowing access shapes the child‘s play
opportunities. Co-occupation is an important concept in light of
the number of situations in which a linked pattern of occupations
is key to treatment, such as that between client and therapist or
client and caregiver. (Pierce, 2000, p. 297).
This idea of co-occupation is useful in suggesting that occupations
cannot be looked at alone, but it is problematic in the focus on the dyad.
Many occupations in fact occur in larger social settings with multiple
actors involved who may or may not be physically present. Following
Lawlor‘s (2003b) lead I am interested in framing my analysis around ―the
child or children, the adult partners in action, the social world of
engagement, and the cultural context. The focus is on acts and actors,
acting in a socially constructed world‖(p. 425), a larger frame than that
45
allowed by the idea of co-occupation. One area that usually involves
these multiple actors is mealtime and this makes it an interesting space
in which to study families of children with autism.
Culture, Feeding and Disability: The Cultural Nature of Feeding and
Family Experience
“Families shift in response to the issues raised by having a family member
with an illness or disability. Roles change. Power relations change.
Activities change. The way in which meals are eaten, vacations are taken,
disputes are negotiated, beds are made, money is earned, and houses are
organized, as well as other aspects of family life, are likely to be affected”
(Lawlor & Mattingly, 2009, p. 34).
Culture has a huge impact on the feeding process as it does on
most everyday routines and rituals that families undertake. In this
study I aim to avoid the idea that culture is a static category into which
people may be placed but instead to look at the ways in which families
are reacting to the cultural ideas around them and adapting to their
unique circumstances. As such I will not be recruiting from any specific
cultural group but will be looking for variety in my sample of families (as
detailed in Chapter Three).
As Olson (2004) notes, many cultures ―promote the affective
pleasures of feeding/eating‖ (p. 34). Parents are often ―surrounded by
cultural reminders that feeding and eating [are] occupations that [are] to
be enjoyed, celebrated and shared in various social ways‖ (p. 34) causing
problems with children‘s eating to be that much more stressful on
46
families. Cultural ideas about the roles of experts, the appropriate foods
and feeding behaviors for children and the responsibilities of parents in
the feeding process all have strong impacts on the feeding experience of
mothers. For this study I acknowledge the impact that cultural ideas
must have on the families I will be studying. I propose to come from
inside the family, to look at culture from the perspective of each
individual family culture instead of trying to understand the broader
impact of culture on the family and the feeding process—an undertaking
which goes beyond the scope of this study. As Rogoff (2004) points out,
people continually ―revise and adapt [their] human cultural and
biological heritage in the face of current circumstances‖ (p. 1). The
families I will focus on in this study will be making adaptations to their
cultural beliefs and practices due to the impact of their current
circumstances. The ways in which these mothers explain how they make
these adaptations are of particular interest to me.
Narrative Methodology: The Importance of Listening to Stories
For this study I propose to use narrative interviewing and narrative
analysis to explore the experiences of mothers. The methodological
implications of this will be spelled out in the following chapter but here I
discuss the impetus for this choice from a theoretical perspective. Much
work has been done around the use of narrative in understanding the
illness experience (e.g., Frank, 1995; Kleinman, 1988; Lawlor &
47
Mattingly, 2009; Mishler, 1984) I have chosen narrative as a theoretical
underpinning for three reasons. Firstly because it will allow me to access
mother‘s understandings of their experiences and the processes of
meaning making in which they engage, secondly because I believe that
the focus on particulars that narrative allows is crucial for
understanding the everyday lived experience of mealtime and thirdly,
because a concentration on narrative is ideal for highlighting the
breaches from what is typical or expected, allowing for a richer
understanding of the challenges and joys experienced by these families
and highlighting the violations of cultural norms that these children and
families experience.
Mother’s perspectives. Encouraging my informants to tell me
stories about the feeding process will help me to focus on what is
important to them in the larger narratives of their everyday lives.
Reissman (1993) defines personal narrative as ―talk organized around
consequential events‖ (p. 3). This focus on consequential events, on
things that matter, provides a window into the experience of mothering a
child with autism. By choosing what to tell stories about the informant
points out the meaningful moments and details of the process of feeding
her child.
The first person narratives of mothers used earlier in this chapter
provide us with a beginning look into this window, a window that peers
48
into motherhood identity and occupational identification. In her
―feminist reappraisal of the larger literature on mothering‖ McDonnell
uses C. C. Park‘s (1967) first person account of mothering a child with
autism as an example of this. She points out that Park‘s book contains
―a systematic exploration of the changes in a mother‘s life caused by the
raising of a handicapped child, an explanation rare—almost unique—in
literature. Because of the challenge of this child, Park grows in the
understanding of her life as a mother. She discovers her deepest
values…As she encourages her child to become a ―self,‖ Park herself
becomes a deeper, more complex self‖ (McDonnell, 1991, p. 74). I would
add to this description that as Park narrates this experience through the
writing of her books she enriches this understanding both of herself as a
mother and of her child. The performance aspect of narrating this
experience compels her to engage in a sense-making process so that she
can tell the story cohesively. By forming it into a narrative that will be
intelligible and of interest to others she forms a representation of these
experiences both to herself and to the outside world.
Particularities. As Mattingly and Lawlor (2000) point out, ―verbal
reports in the form of narratives are the best way to discover a person‘s
lived experience of particular events‖ (pp. 4-5). The particulars of
everyday life are what I am looking to access with this study, the
particularities of motherhood, the particularities of feeding and mealtime,
49
the particularities of mothering a child with autism. This focus on
particularities is important because I am not interested in abstract
generalizations about feeding children with autism. Abstract
generalizations skim over to the ―complex and often quite tacit meanings
(including dilemmas, hopes, anxieties and the like)‖ that surround an
activity like feeding a difficult to feed child (Mattlingly & Lawlor, 2000, p.
5). It is only by accessing these complex meanings that I will be able to
understand these mother‘s perspectives and to offer something valuable
to those who would seek to better understand this experience.
Breaches. A key element of narrative theory is the attention to
breaches or trouble. Breaches occur when something happens in the
story that does not fit with the cultural expectations of the scenario.
Bruner (1991) points out that for a narrative ―to be worth telling, a tale
must be about how an implicit canonical script has been breached,
violated, or deviated from‖ (p. 11). This concentration on moments of
trouble allows for both the trouble itself and the cultural norms that it
violates to be illuminated. Bruner (1991) references Kenneth Burke‘s
ideas around the dramatic pentad, the balance between an agent, an act,
a scene, a purpose and an agency and the Trouble that occurs when the
balance between these elements is upset. ―When this ratio becomes
unbalanced, when conventional expectation is breached, Trouble ensues.
And it is Trouble that provides the engine of drama, Trouble as an
imbalance between any and all of the five elements‖ (Bruner, 1991, p.
50
16). In feeding difficult to feed children there are multiple breaches of
what is expected. The child may not follow the expected cultural norms
of moving along the typical developmental trajectory of feeding skills, the
mother cannot feed her child as she expects and desires and this
impacts her ability to participate in some of the usual cultural scripts in
mothering. By attending to the stories these mothers tell about these
breaches, these violations of the norm, I hope to be able to more clearly
understand both the experiences these mothers have and the larger
cultural scripts around mothering involved in the occupations of feeding
one‘s child.
A second aspect of breaches that is important for this study is that
―breaches also provide rich grounds for innovation‖ (Bruner, 1991, p.
12). The mothers of children with autism and feeding difficulties that I‘ve
interacted with clinically are master‘s of innovation, of coming up with
unique ways to feed their children and to manage the myriad challenges
that go along with having a child with a feeding difficulty. The ability of
narrative theory and narrative interviewing to attend to these breaches
and the innovations that accompany them makes it ideal for use in this
study.
51
Chapter 3: Methodology
“Qualitative research design is an act of interpretation from beginning to
end” (Janesick, 2000, p. 395).
Introduction
This chapter seeks to answer the question of how for this study.
How did I pursue the answers to the questions set out at the end of the
first chapter? How did I use the information gained from reviewing the
literature discussed in the second chapter to support the collection of
real life data? How did I begin to delve into the experience of having a
child with autism and difficulty with feeding? How have I assured
scientific rigor, trustworthiness, and applicability of my findings?
This chapter begins with a brief overview of the reasoning behind
my selection of the methodology for this study and the conceptual
frameworks that I chose to use in understanding these families‘
experiences. The criteria and procedures for selection of participants
and collection of data follow and my role as a researcher, my theoretical
assumptions and the unique issues involved with studying families in
their everyday lives is discussed last.
Throughout this chapter and the ones that follow, all of participant
names and the names of their family members and the professionals they
work with have been changed to pseudonyms. Minor changes have also
been made to avoid details in the data that might allow for identification
of the subjects or their families.
52
Overview of Selection of Methods
Building on my experience in working with Drs. Lawlor and
Mattingly on the N.I.H. funded Boundary Crossings projects and the
support from the literature detailed in Chapter Two, I studied the
experience of mothers of pre-school aged children with an autism
spectrum disorder and a feeding difficulty using narrative interviewing
and analysis. Mattingly and Lawlor (2000) identify an important feature
of qualitative inquiry as ―a concern with the development of theoretical
constructs and innovative hypotheses that may be applied more broadly
to similar phenomena so that the intensive study of a comparatively
small number of participants will yield more general understanding of
the subject area.‖ (p. 57). This feature emphasizes a theoretical
orientation that must be present from the initiation of the study. As
detailed later in this chapter, data analysis was an ongoing project which
worked to build theory from the data that was collected and to bring that
theory back into the interviews so as to question and refine it.
Mothers and Families: Selection of the Participants
Full descriptions of the mothers interviewed for this study are
provided in story format in Chapter Four. Criteria for selection of the
participants (mothers) to be interviewed for this study was as follows:
53
1. Participant identifies as the mother of a child diagnosed with
autism spectrum disorder (mother identifies that the child is eligible for
services through the California Regional Centers based on an autism
spectrum disorder diagnosis)
2. Mother self identifies as having difficulty with mealtimes,
feeding/eating (limited diet, rigidity around feeding/eating etc.)
3. Child of subject is aged 3-5 (old enough to have firmly established
feeding patterns, past major feeding transition periods in typical
development) and is an oral eater.
4. Mother was willing to consent to interviews, is the primary feeder,
and is able to communicate with the investigator clearly in English.
Exclusion criteria. Potential Participants were excluded if they
currently had or had in the past a direct clinical relationship with the
principle investigator.
My research focused on five mothers each of who has a preschool
aged child who qualifies for services with Regional Center through
receiving a diagnosis of autism spectrum disorder. Each of the mothers
are the primary feeders for their children and each self identified as
having significant difficulty with mealtimes with her child. Recruitment
was stopped after five participants due to the desired depth of data
richness being reached.
This study primarily used a sample of convenience with an emphasis
on purposeful diversity of the participants selected. In order to promote
54
a rich data set that allowed for comparison between cases, I attempted to
achieve diversity along a variety of factors discussed below including
income level and ethnic background. In order to facilitate the data
collection and analytic processes, all mothers had to be fluent English
speakers.
As noted in the previous chapter, I anticipated that there would be
a huge cultural impact on the feeding experience but I chose to focus on
the unique experience of each family and how they adapted to the
cultural ideas around them. I was not interested in making generalized
statements about the cultural impact of any specific cultural group. I
did look for similarities and focused on the unique stories that these
families presented to me. I was searching for a deep understanding of
five ways in which mothering a child with autism and a feeding difficulty
can be done, not the way that everyone of a certain background does it.
In general, this sample was selected in order to achieve a rich data set
with maximum variance but should not be assumed to represent the
larger group of all mothers with preschool aged children with autism and
feeding problems.
Specific factors that I sought variation in included, but were not
limited to, the following:
1. Number of children in the family and birth order of the child with
autism—Mothers may experience a feeding difficulty differently
depending on what they have to compare it to. If they have other
55
children who have not had feeding challenges they may be more
likely to identify subtle differences in how they feed this child.
Mothers with only a child with autism may see unusual behaviors
as more typical when they only have peers of the child who they
probably rarely feed to compare them with. Birth order is thought
to be important due to the effect of previously having gone through
feeding transitions with another child if the child is older or of
comparing the child to a younger sibling who may be outstripping
the child diagnosed with autism in his ability to achieve feeding
milestones or eat complex foods. The five mothers in the study
had a variety of experiences with this. Melanie (all names used
throughout this document are pseudonyms) has two children. Her
oldest is Jabari, a boy with the diagnosis of autism and her
youngest is Sadio, a girl who is typically developing and does not
have any particular feeding challenges. Rachel has two sons both
of whom have been diagnosed with autism spectrum disorders and
both of whom have challenges with feeding. Her older son has
much more mild feeding challenges than her younger son. Jen has
three children. The two older teenagers have special needs not
related to autism and no challenges with feeding or eating. Her
youngest, Benjamin has an autism diagnosis and severe feeding
difficulties. Sofia also has three children, two of whom are
significantly older than her son with autism. The older two do not
56
have any special needs. Finally, Gabi has only one child, Davey
who has a diagnosis of severe autism. The differences that seem to
be related to each of these family compositions are explored in the
stories about each family in the fourth chapter.
2. Level of autism diagnosis—Autism is a spectrum disorder with
children exhibiting various levels of impairment in their verbal
abilities, social abilities, cognitive functions, and life skills. The
impact on a mother‘s experience of feeding may be very different if
her child is only mildly impaired in these areas versus a child who
has more severe involvement. Variation was sought in this area
through requesting specific characteristics in children (such as
verbal and non-verbal, severely involved or mildly involved) when
asking for therapist referrals. This factor turned out to be much
more complicated than I had anticipated. As I discuss further in
the final chapter, the fluidity of diagnostic levels soon became
evident as parents told me about the transitions their children had
made in the past and I witnessed changes in these areas over the
course of the study. For example, Benjamin was initially
diagnosed as moderately to severely autistic around the age of
three. When I met with Jen for the first time Benjamin was 4 years
old and had just begun speaking. He made dramatic
improvements over the course of the study and in my clinical
57
opinion would have received a diagnosis of mild autism by the time
we completed our fourth interview six months later. Both Jabari
and Lawrence had also made significant improvements since their
initial diagnosis. Though they each would have still received an
ASD diagnosis, the level would undoubtedly have changed. Davey,
Gabi‘s son, was the most severely impacted. He was non-verbal
and was the most difficult to engage with socially.
3. Amount of time spent in the home with the child—One area of
variation that may impact a mother‘s experience of feeding her
child is simply how often she does it. Working mothers may have
different experiences than those that are full-time caregivers in
that they may share varying amounts of feeding responsibilities
with other caregivers. This again was an area of variability for
these mothers. Melanie had just gone from working full time to
staying at home full time, Sophia and Jen had both been working
part-time then transitioned to staying at home, Rachel had been
working full time but was now home on disability, and Gabi works
full time from home. I did not end up with a mother who was
currently working full time outside the home during the study.
These mothers choice to be at home was strongly influenced by
their children‘s intervention schedules and their feeling that their
children would benefit from them being at home.
58
4. Participation in feeding therapy—Various forms of therapy for
children with autism are available to address feeding difficulties
and some families choose to access these services while others
focus on different priorities or may not have access to feeding
therapy. I had initially hoped to include families who both had and
had not had feeding therapy in order to access the stories of
mothers who both have and have not had the input from
professionals about their child‘s feeding difficulties. Unfortunately
I was not able to recruit a mother who had not had some sort of
feeding therapy for her child. I was able to get mothers whose
children had received a variety of types of feeding therapy both
within cases and between.
5. Socio-economic Status (SES)—Differing socio-economic status of
families may lead them to have greater access to resources and to
engage in different ways with the feeding process. For example, in
Iversen‘s (2006) first-person narrative of mothering a child with
autism, it is notable that she has nannies and privately paid para-
professional service providers preparing food and feeding her son.
It follows that her experiences around this part of mothering may
be very different from a mother who does not have any in-home
help. Another aspect of socio-economic status that may impact a
mother‘s perceptions around feeding is her food budget. Foods
59
recommended for diet modifications sometimes recommended for
children with autism are often more expensive and need to be
bought at specialty markets and experimenting with different foods
in an effort to overcome a child‘s limited diet can be a process filled
with food waste due to the child‘s rejection. I was able to recruit
mothers across a range of socio-economic statuses. The range
went from Rachel who is a single mother living in an inner-city
apartment on disability with very limited financial resources to
Gabi who lives in a good sized home in the suburbs and shared
that she and her husband spent over $25,000 on alternative
therapies for their son the previous year.
6. Geographical Location—Access to specialty markets, clinical
support for feeding difficulties or other therapeutic needs can be
influenced by geographical location. Diversity of location was
sought in the sample though all Participants were in the greater
Los Angeles area in order to facilitate data collection. Participants‘
locations were several different suburbs of Los Angeles, one inner
city apartment and one upper class Los Angeles neighborhood.
Participants‘ locations are detailed in Chapter 4 as they affected
each family‘s story.
All of these factors impacted the individual stories. Stories for each are
detailed in the fourth chapter. One factor that I had not anticipated in
60
the recruitment process, but by chance ended up with significant
variability in my sample, was the immigration status/experience for the
mothers and their family members. Rachel came to the US from Ethiopia
as an adult, Melanie‘s husband emigrated from Nigeria in his late teens
and Sofia and Jen were born in Los Angeles to parents who had recently
come from Mexico. Each of them talked about how this influenced their
attitudes toward food and their families‘ expectations for them and for
their children.
One area for which I did not achieve variation, though I tried, was
the gender of the child with autism. Since four times as many boys are
diagnosed with autism as girls I had difficulty finding a mother of a girl
diagnosed with autism and a feeding difficulty that was interested in
participating in the study. I specifically asked therapists to recruit girls
but the two who were suggested and asked chose not to participate.
Therefore, all the children in the study were boys.
Recruitment
I recruited participants through my contacts at local agencies that
serve families of children with autism. I asked for therapist
recommendations for families who would meet the criteria presented
above who they believed might be willing to participate in a research
project. I asked the therapist to share my recruitment flyer with the
mother and to inquire whether she would be interested in hearing more
61
about my research. If she expressed interest, the therapist requested
permission from the mother for me to contact her to discuss the project.
When permission was given, I set up a time to describe the project and
see if the mother might be interested in participating. As discussed
above, this was primarily a sample of convenience but I did ask
therapists to look for specific factors to ensure diversity in the factors
above along with age, ethnicity, and income level wherever possible.
Overall, therapists suggested eleven different possible mothers to
me over the course of my recruitment period. Of these, three were
eliminated due to not fully meeting the criteria for the study and three
others chose not to participate citing primarily lack of time as their
reason. One mother withdrew after a single interview citing that she was
not ready to embrace the emotional intensity that discussing her son‘s
diagnosis and feeding problems evoked. More details related to this can
be found in her story in the fourth chapter.
Procedures for Collection of Data
This study consisted of 14 recorded interviews with mothers
ranging from one to 2.5 hours. I conducted an initial in-depth interview
lasting from one to two hours with each of the primary informants
focusing on their experiences with feeding the child with autism and
their general impressions of mealtime for their family. One to three
follow-up interviews were conducted to clarify selected concepts and
62
expand upon areas discussed in the initial interview with all but one of
the mothers. In all of the interviews, I asked mothers to talk about
specific reflections on the meals and stories of memorable mealtimes or
mealtime experiences (see Figure 1 for a list of sample questions and
content areas used for the interviews).
Eliciting stories allowed me to explore the meaning of these
experiences for these mothers since as Mishler (1986) notes, ―storytelling
and story comprehension are natural and pervasive modes of
communicating meaning‖ (p. 68). Participants were also asked about
artifacts that helped to encourage story telling or to clarify the stories
they were telling. These included emails that the mothers had sent
about their children‘s eating, journals they kept, clinical reports and a
book that one child‘s feeding therapist had created. One mother also
showed me a children‘s book about eating that she had read to her son.
Each interview was digitally recorded and transcribed verbatim using
pseudonyms to protect the confidentiality of the families involved and
written or audio recorded field notes were generated for each encounter.
These field notes are composed of details of what I observed and
experienced during the interviews along with reflections on what the
informant was telling me and questions I generated for future interviews.
A research journal was also created to reflect upon the overall process of
data collection and analysis and to note overarching themes and
between-case observations. All hard copies of data collected are stored in
63
a locked file cabinet in my home office and electronic data is stored in a
password protected file on my personal computer.
As the process of data collection proceeded, ongoing analysis was
taking place. This analysis created questions for further interviews and
assisted me in determining when I had achieved enough depth in the
data collected to provide the thick description (Geertz, 1973) necessary to
adequately portray the perceptions of the mothers interviewed for my
study. Ongoing thematic and narrative analysis took place both during
and after data collection and was supported by my ongoing interaction
with my peer review group and my dissertation chair. Interviews ended
once this level of data had been obtained and at that point I let each
mother know that I had completed the initial interview process. At that
time I thanked each mother for her participation and give her a token gift
of thanks to express my indebtedness to her for sharing her stories. As
needed during the final phase of data analysis and write-up, brief follow-
up has been conducted with informants by phone to clarify a point or
further develop an idea on a case-by-case basis.
Interview Methods
“The interviewers presence and form of involvement—how he or she
listens, attends, encourages or interrupts, digresses, initiates topics and
64
terminates responses—is integral to a respondent‟s account” (Mishler,
1986, p. 82)
As the above quote makes clear, the way in which an interview is
conducted can have a profound effect on the quality of data that is
collected. Through my work collecting data for the Boundary Crossings
Projects, experience in classes focused on interviewing in qualitative
methods and in my own clinical practice of interviewing families I have
been able to refine my own interview methods. I used open ended
questions aimed at facilitating story telling in order to elicit narrative
responses. Interviews were loosely structured and informal and
interview questions evolved out of answers from previous questions and
previous interviews. Following Mishler‘s (1986) suggestion, informants
were allowed ―to continue at length without interruption‖ (p. 74) even if
the story did not seem immediately relevant. This allowed for the
emergence of ―different levels of interpretation that may be required to
relate subplots to each other and to the general point of a story‖ (Mishler,
1986, p. 74) which although often not be immediately obvious to me as
an interviewer later came to be crucial in interpreting the data. As
Mishler suggested, these connections often developed later in the
interview or in subsequent interviews. The series of 2-4 interviews was
chosen in order to allow for these later connections to form as well as to
allow the mothers to access and share a deeper level of understanding.
65
As Polkinghorne (2005) notes, ―To move past initial thin, surface
responses from participants, researchers need to demonstrate to the
participant that it is safe to be open and revealing of deeply personal
feelings and information‖ (p. 143). This proved to be particularly
important with one of the mothers who omitted significant details from
her stories initially. The work of developing relationships with these
mothers felt important and often the end of the interview time held the
richest data and each subsequent interview allowed for deeper
revelations.
During the interviews, prompting to encourage more narratively
focused answers was used such as asking ―Do you have a specific
example?‖ or ―Can you tell me a story about one time that happened?‖
(as noted in Fig. 1) in order to promote a focus on the day-to-day
specifics of these feeding experiences. The different mothers I interviewed
needed different levels of prompting with two mothers seeming to
naturally fall into a rhythm of telling specific stories and the other three
needing more cueing to tell stories.
One specific factor important to the process of interviewing these
mothers was the location where the interviews took place. Mothers were
given the option of meeting at their homes or at a public place. One
mother chose to do the initial interview at a public place and then invited
me into her home for the remaining interviews. A second mother
scheduled the interviews in the food court of a local mall. The remaining
66
three mothers preferred all interviews to be done in their homes.
Children were welcome to be present during interviews as long as
mothers are able to participate in the interview process. When children
were present, the mothers often had to stop and attend to their needs. I
was impressed by the mothers‘ abilities to attend to the interview content
while moving back and forth into interactions with the children. I would
write down a quick note about the subject we were speaking about when
interrupted but often even after several minutes of attending to children,
the mothers did not need my cue to jump right back in where we were
when they came back to the conversation.
Narrative Interviewing and Analysis
“A general assumption of narrative analysis is that telling stories is one of
the significant ways individuals construct and express meaning.” (Mishler,
1986, p. 67)
Through my participation in data collection and analysis on the
Boundary Crossings projects I have developed a deep appreciation for the
access that narrative interviewing and analysis provides to the
experience of families‘ lives. As noted in the first chapter, Boundary
Crossings: An Ethnographic and Longitudinal Study and Boundary
Crossings: Resituating Cultural Competence for which I have been a
research assistant from 2002 to the present focuses on understanding
67
the everyday lives of families with children with disabilities. I have been
lucky enough to be able to watch experts use innovative methods for
collecting narrative data while working on this project. Through my work
as a research assistant I have been gifted with the opportunity to read
their interviews, watch their videotapes, listen in on and participate in
their analytic process. As I continued to develop my skills for collecting
narrative data over the last few years by entering into the data collection
process on this grant, I was able to access expert mentorship on the
process of narrative interviewing. I was able to use the skills I had
developed through this practice in order to access similarly rich
understandings of mothers‘ experience around feeding, eating,
mothering, and autism.
In interviewing the mothers for this study I used the following sample
interview questions and prompts to guide my inquiry.
Figure 1: Sample interview questions
Tell me about mealtimes with your family.
Can you tell me about George
? When was he diagnosed with
autism? When did you know that something was different about
George? What was that like for you and your family?
Can you tell me about the most recent meal you served to George?
George is a hypothetical child with autism spectrum disorder.
68
How would you describe George‘s feeding/eating? How is his eating
different from other children his age? Can you give me a specific
example?
Can you tell me about the last meal you fed George? Can you
describe what you did to prepare that meal?
Tell me about a time you had a good meal as a family.
Tell me about a time you had a rough meal as a family.
What kinds of things have you tried to manage George‘s eating
challenges? Have you done anything to try to change how George
eats? If so, what? How did you come up with these ideas?
Do you ever go out to eat with George? What is that like?
How do holiday meals go with George and your family? Can you
tell me about your last Thanksgiving, Christmas, Passover meal?
(Whatever holiday is relevant to the season and family.)
In what ways, if any, do you feel George‘s autism has affected your
experiences around food and mealtime as a family? Can you give
me a specific example?
Can you tell me about a time when feeding George when you
weren‘t sure what the right thing to do was and you had to decide?
Do you have special dishes or utensils you use with George?
Would you mind showing them to me?
69
Have you ever read anything online or seen anything on TV that
informed how you think about mealtimes with your family?
Can you tell me about how you shop for food? What kinds of foods
do you buy for your family? Do you take George with you when
you go shopping?
Tell me about how you plan the meals for your family. Do you
make different things for George than for the rest of your family?
What do you think are the main causes of George‘s eating
differences? Do other family members agree with this? Is there
anyone who disagrees?
Has there ever been a time when you felt that other people were
making assumptions about George or your family when you were
eating in public? Has anyone ever said anything to you about
George‘s eating or mealtime behavior?
Does anyone else ever feed George? How does that go?
Do you do different things at mealtime if other people are around
than if it‘s just you and your family?
Do you know any other parents who have children that have
difficulties at mealtimes?
The following cues will be used to elicit narrative data if it is not
70
forthcoming from the above questions:
Can you tell me a story about that?
Can you give me a specific example?
Tell me more.
Tell me what happened.
Narrative and Thematic Analysis
Transcripts from interviews were read and analyzed using
narrative methodology. Each transcript was checked against audio data
to insure accuracy of transcription. Data analysis was done concurrently
with collection of the data and continued after data collection was
complete. It involved independent review of recorded interview
transcripts and written notes and researcher journaling as well as expert
peer review sessions with a group of at least two current and/or former
doctoral students in occupational science with areas of expertise in
autism, feeding, mothering, pediatrics and/or occupational science. In
addition, an ongoing journal was created to compile initial theoretical
impressions and to identify major themes and to guide further inquiry
and coding.
Mishler (1986) points out that most people intuitively recognize
when a story is being told. In analysis though it may be difficult to
71
identify story boundaries and a variety of levels of interpretation may be
necessary to understand the subtleties of the sub-plots and their relation
―to the general point of the story‖ (p. 74). Methods used in my work on
Boundary Crossings and in Dr. Mattingly‘s class were helpful in doing
this work. One technique that I have been mentored in using by Lawlor
and Mattingly takes its inspiration from literary analysis. This technique
involves assigning an interpretive title to an interview as if it were a book
and breaking it into separately titled chapters (Mattingly, 2007). This
forces one to make analytic decisions about what belongs in each
narrative chunk of the interview and to begin the process of analyzing
the content. All interviews were chaptered and titled using this method
to suggest themes and identify important narrative chunks.
Once stories were identified, another analytic technique based on
suggestions communicated in a narrative workshop with Professor
Arthur Frank titled ―What can you say about illness narratives: Tensions
between witness and analysis‖ on March 26
th
, 2008 was used on selected
chunks of data. This method involves the analyst retelling the story in a
different way. Frank suggested that playing with a story in this way,
creating alternate fictional accounts of the same events allows the
analyst to gain perspective on why the story was told in the way it was,
to explore what the teller knows or believes about the world that leads
her to configure events in this particular way. This method proved
useful in examining what assumptions the participants were making
72
about what the interviewer knew and was particularly useful in
illuminating theories of mothering detailed in the chapter titled Little
Victories.
Reissman (1993) points out that an examination of the structure of
the narrative is also useful in analyzing narrative data ―the structure will
be examined by looking at the organization, thinking about why the
informant constructed her story in this particular manner and context
for this listener‖ (p. 61). This proved to be useful in examining what was
told, how it was told and what was left out. Omissions from stories were
noted in several places and provided important theoretical insights into
the motivations and meaning behind stories that were told.
Throughout the process of data collection and data analysis the
iterative process required that data analysis methods be researched and
refined as they were needed to make sense of the data coming in. The
chaptering technique described above proved to be more central in
understanding the data than had been initially anticipated. It
illuminated themes within and between interviews and cases and ended
up being a primary method for initially breaking down the data into
manageable chunks. Further analysis was then done by developing a list
of themes suggested by the chapters, establishing a color code for each
and going back through all of the data highlighting where each of these
emergent themes appeared within the chapters. Over the course of
several readings these themes were refined and the connections between
73
them were explored. As a final act of analysis, a story was written for
each family, parts of which are included in the fourth chapter. Through
the writing of these stories, important themes were explored across the
interviews.
Reflexivity
“Qualitative researchers accept the fact that research is ideologically
driven. There is no value-free or bias-free design. Early on, the qualitative
researcher identifies his or her own biases and articulates the ideology or
conceptual frame for the study. By identifying one‟s biases, one can see
easily where the questions that guide the study are crafted. The
researcher owns up to his or her perspective of the study and may even
track its evolution by keeping a critical reflective journal on the entire
research process and the particular role of the researcher.” (Janesick,
2000, p. 385)
As evidenced in the stories in the first chapter of this proposal, I
have a deep passion for working with families and children and a
particular interest in working with families with children with autism.
This passion of course comes with preconceived notions and beliefs
about these families and about the nature of the difficulties they have
around feeding and eating. My work to this point on the Boundary
Crossings research has also influenced my beliefs about families of
children with disabilities, data collection, interviewing techniques, and
data analysis. These along with the multitude of culturally based
assumptions shaped by my own life experiences and education had
significant impacts on how I proceeded with studying this phenomenon.
As I went about collecting and analyzing data I worked to bring these
74
preconceived notions to the forefront, to examine whether they were
supported by the data I collected and to reflexively examine how they
impacted the questions I asked and the ways I constructed meaning
through analysis. As the Janesick (2000) quote above points out bias-
free design is impossible, but with forethought and awareness of the
inevitability of bias, it‘s effects can both be mediated and, in fact if
examined carefully, add to the value of the work being done.
To begin the process of examining my own biases, I created a list of
theoretical assumptions (Fig. 2) during the proposal stage that I
suspected would impact how I approached this study. This list evolved
as I engaged in the work of collecting and analyzing this data and
additions to it and reflections upon it can be found in the final chapter.
As noted above, a research journal was created to reflect upon the overall
process of data collection and analysis. Part of this journal was the
regular exploration of the assumptions listed below and additional
assumptions as I became aware of them during the process of data
collection and analysis. Ongoing interaction with my peer reflection
group and my dissertation advisor also served to insure that I was deeply
engaged in this process.
Figure 2: Theoretical Assumptions
I believe that:
Many children with autism have significant feeding difficulties that
75
impact family experiences of mealtime and the occupations that
are related to feeding (Ahearn, et al., 2001; Archer & Szatmari,
1991; Bledsoe, et al., 2003; Bowers, 2002; Cornish, 1998; Ledford
& Gast, 2006; Legge, 2002; Schwarz, 2003).
Mealtime is important time for families (Aukrust & Snow, 1998;
Bundgaard, 2005; DeVault, 1991; Legge, 2002; Ochs, et al., 1989;
Olson, 2004; Patton, et al., 2004).
Parents hold beneficent motives behind what they do for their
children (Ruddick, 1995).
Parents do significant amounts of work in order to create positive
feeding experiences for their children (DeVault, 1991; Ochs, et al.,
1989; Ruddick, 1995).
Having a child with a feeding difficulty is a very difficult thing
(Case-Smith, 2004; Ernsperger & Stegen-Hanson, 2004; Legge,
2002; Olson, 2004).
By the age of 3 most children have firmly established feeding
patterns (Bober, Humphrey, Carswell, & Cole, 2001; Collins, et al.,
2003).
Mothers are usually primary feeders (DeVault, 1991).
People have expectations of how children should participate in
everyday activities such as mealtime eat and when children don‘t
76
fit into these patterns it can become a very difficult challenge to a
woman‘s ideas about being a mother and caring for a child (Craig
& Scambler, 2006; Cronin, 2004; Cutler, 2004).
There is value in understanding human being‘s experiences
(Zemke & Clarke, 1996).
Parents develop strategies for helping children with autism find
ways to be successful at eating and other everyday occupations
(Cutler, 2004; Ernsperger & Stegen-Hanson, 2004).
Narrative interviewing is an ideal method for eliciting people‘s
understanding of the meaning of their everyday activities (Bruner,
1991, 2002; Mattlingly & Lawlor, 2000).
Reliability and Validity
“Validity in qualitative research has to do with description and explanation
and whether or not the explanation fits the description. In other words, is
the explanation credible? In addition, qualitative researchers do not claim
that there is only one way of interpreting an event. There is no „correct‟
interpretation.” (Janesick, 2000, p. 393)
The trustworthiness of this data, the credibility and reliability of it
was ensured through the processes detailed above. These included
keeping a detailed research journal along with detailed field notes that
elaborate the reflective process involved in analytic decisions made
before, during and after the interviews. To insure that the analysis
77
accurately reflected the data that was collected, multiple interviews were
done with each informant. Returning to the transcripts and, as
necessary, the informants as analysis was occurring was also used to
check the validity of theoretical conceptualizations. To further insure
this, ongoing outside checking was done through the presentation of
ideas supported by the data to both my dissertation advisor and my
group of peer experts as detailed above.
Conclusion
This study sits at the unique intersection between mealtime,
autism spectrum disorders, mothering and occupational science. By
straddling these multiple worlds, it allows for a new understanding of
how these mothers perceive their everyday lives. In the chapters that
follow, I hope to show that I have gone beyond describing what I heard
and experienced while interviewing these mothers. I hope to contribute
to theory building that will support clinicians working with families
experiencing similar challenges and researchers interested in ideas about
motherhood, mealtime, autism spectrum disorders and occupational
science. Through the use of narratively focused interviews I was able to
achieve an intensive study of a small number of participants that opened
up avenues for a broader understanding of the experience of mothering a
child with a feeding difficulty, the experience of having a child with
autism, and the valuable process of creating these understandings.
78
The experience of collecting and analyzing this data was both
exhilarating and difficult. As I had previously seen in my experiences in
my work on the Boundary Crossings Projects, detailed in Chapter One,
and read about in a multitude of studies of family life (e.g., DeGrace,
2003; DeVault, 1991; Ekström & Jonsson, 2005; Pierce, 2000; Spitzer,
2003), developing an understanding of real people living real ―lives in
motion‖ (Elder, 1998, p. 8) is a complex process, but through opening
myself up to the mess, I feel that I was able to go beyond the limited view
available in the clinical setting to provide a richer perspective on the lives
these mothers live and the deeper theoretical issues that their stories
illuminate.
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Chapter 4: Stories of Mothering
This chapter is made up of stories. It is broken into five sections,
one for each mother. Each section gives some general information about
who the mother is and highlights some of the important stories about her
and her children. Some initial analytic work is done in each story though
this is significantly expanded on in the following chapters. Each of the
stories in this chapter presents a different way to mother a child with
autism and a feeding problem. Each mother‘s unique story frames her
ideas about mothering in general and her approach to dealing with the
challenges that autism and feeding difficulties place in her way. The
ways each mother responds are shaped by her cultural context and her
own priorities for raising her child. Many of the stories featured here
would be difficult to hear in a clinic setting due to constraints on time
and expectations of how that time will be used yet they are important for
clinicians to have access to in order to understand the day-to-day life of
families with children with autism spectrum disorders.
Some of these stories may seem to not be about feeding or
mealtime at all yet this highlights one of the unique findings of this
study. Each story that these mothers told matters. Feeding and eating
are so closely wrapped up in the day-to-day mothering of these children
as to be almost impossible to pull out into distinct chunks. Feeding
stories can stand alone, but they are often wrapped up in the stories of
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who these women are as mothers and who they see their children as
being. They are wrapped up in the complexities of daily routines and the
complications of the many relationships that each of these mothers and
each of these children have to maintain with other family members and
the multitude of school and clinic professionals. Hearing these stories in
their complicated contexts made their meaning so much richer and their
potential to inform decisions about both research and intervention much
more real so I have chosen to share them here in a way that preserves
this context, that keeps the stories about food and mealtime in with the
stories of everyday life and the stories of the extraordinary moments that
have been milestones and markers for these families. Further
exploration of these themes as they relate across the cases are explored
in the next three chapters and the implications for clinical practice and
further research are focused on in the final chapter.
Rachel’s Story: “I Feel the Same Thing They Feel.”
Rachel is a single mother living in a small apartment in the mid-
Wilshire area of Los Angeles. She has two sons, Lawrence who is five
and Douglas who is ten. She emigrated from Ethiopia before her
children were born. She was referred to me through an occupational
therapist at a local agency that sees her younger son for feeding therapy.
The focal child for the study in this family is Lawrence but the older son
has also been diagnosed with an autism spectrum disorder. Her older
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son has had more mild difficulties with eating though he does have
serious asthma and behavior problems related to rigidity and poor social
skills.
I met with Rachel at her home. Her children were there for some
but not all of the interviews. Rachel is very dedicated to her children and
to their programs of intervention. She has modified her living room to be
a small therapy gym with swing hooks in the ceiling and a small
trampoline in the middle of the floor.
The Diagnosis: A fractured narrative. Rachel does not tell
Lawrence‘s diagnosis story very clearly. She has a thick accent and uses
tenses unusually so deciphering timelines is a challenge and she does
not seem to be able to create a coherent narrative from this time. From
what she describes, this was a chaotic time and perhaps she is unable to
narrate it smoothly because she was not able to make sense of all that
was going on and has yet to do so making this what Frank (1995) would
call a chaos narrative, a time ―without sequence, telling without
mediation and speaking about oneself without being fully able to reflect
on oneself‖ (p. 98). Frank points out that these narratives are difficult to
listen to and difficult to make sense of for the listener. From piecing
together stories from different points in our interaction, I was able to
create the following story from these fractured pieces.
Lawrence was a poor breast feeder and had switched to formula at
about 1.5 months of age. He was first referred to occupational therapy at
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a local hospital by his pediatrician when he was about 6 months old due
to his difficulties in transitioning to solid foods. He was vomiting and
gagging when presented with solid foods even if Rachel did not try to feed
them to him. She surmised that just looking at or smelling the foods
could make him vomit. This first occupational therapist worked with
him on touching different foods but was not very successful. Sometime
between when he was 18 months and 2 years old his occupational
therapist told Rachel that she had noticed that he was losing the words
he had been using.
At this same time, Rachel took him to a pediatrician because he
was sick with a fever and the pediatrician suggested for the first time
that he might have autism. Rachel took him to the local regional center
and they diagnosed him with a speech delay. The regional center
referred her to a parenting class where she learned some techniques for
elicit speech in her son. She was first approved for an 8-week class but
then expanded into a 12-week class. She continued to seek out
parenting classes through the regional center and through her medical
insurance and credited them with helping her figure out how to help her
son with the many challenges he has had since that time.
One of the toughest things for Rachel to deal with during this time
was that Lawrence was putting all kinds of non-edible items in his
mouth, ears and nose yet would not eat food. She had to take him
multiple times to the hospital to have these items removed and these
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were very traumatic experiences where Lawrence would need to be
restrained. Rachel told these stories several times during our interviews,
they were obviously an important marker in her understanding of her
and her son‘s experience of autism.
Rachel: It was not easy, I end up in the hospital many times.
Kim: Really.
Rachel: And uh, and when he go there, he cannot, they cannot
handle him. And he is a little guy but they have to careful when
they take it out. They have to restrain his hand. And they have to
strap all his leg and there is four people coming. Not to move, to
hold his head.
Kim: Oh.
Rachel: And they have to take it out. And he will vomit, vomiting
is... The hospital knows him. And ―OK let us put him in right
away‖, if he is overwhelmed is to vomit.
Kim: Right.
Rachel: So they give me a towel. Right.
Kim: So this would be, he would put something in his nose,
Rachel: Yeah.
Kim: You‘d go to the emergency room? (Rachel: Yeah) They‘d strap
him down, they‘d give you a towel?
Rachel: Yeah, yeah, yeah.
Kim: And oh, That has to be so scary.
Rachel: It is. It happened like 5 or 6 times
Rachel related this in a very matter of fact manner but this story is
dramatic. Lawrence was vomiting any time he was stressed at this
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young age and they were there so frequently that the hospital staff knew
what would happen when he came through the door. Finally after the 5
th
or 6
th
time this had happened, a doctor suggested medicating him to
reduce this behavior. Perhaps the doctor realized that if this was
happening so frequently and was creating such a stressful situation for
Rachel in the hospital, she might need some assistance with her day-to-
day life.
Lawrence was about two years old and they started him on
Clonodine, a drug commonly used with children with ADHD. Rachel‘s
initial reaction was that she did not want to medicate her child, but as
she says ―I learned from him, from experience, that there is no choice for
him.‖ It was important to Rachel that they explained to her that this was
not a psychotropic drug, but was a blood pressure medicine that just
happened to have a side-effect of calming him down. She speaks in
general of medication being a poor option for children but he remains on
the drug to this day and Rachel feels it has been very helpful in
managing his behavior. A side benefit of this for the family was that
Lawrence stopped chewing his shirts which had become a major
problem. He was chewing through shirts so rapidly that Rachel had to
find a cheap source for shirts because he was destroying one every day.
This mother was dealing with significant disruptions to her day-to-day
life. She was improvising solutions by buying fresh shirts and traveling
with towels, but this was a very stressful time. Rachel‘s understanding of
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her son and the impact that autism has on their lives is one of chaos, of
stressful disruptions that she is searching for solutions to, that she
needs help to manage through parenting classes, professional services
and even medication.
What Lawrence eats: The feeding journey. At the time of the first
interview, Lawrence was getting most of his nutrition from a
supplemental formula. He had recently transitioned from the bottle to a
sippee cup for his Pediasure/milk and his medication. This was
facilitated by the staff of the afterschool program he and his brother have
attended. Rachel credits the staff with telling him that he could not
come to the summer program with his brother unless he was off the
bottle. Rachel picked up this story and told him over and over that he
was going to need to drink from the sippee cup if he was going to go to
this program. This use of repetition of a story to Lawrence about the
behavior that she wants him to do is a strategy that Rachel described
using repeatedly. By the time we completed our third and final interview
her feeding therapist had picked up on this strategy, formalized it by
creating a book with a story and pictures about Lawrence eating that the
family was reading before dinner each night.
Rachel estimated that she had tried maybe twelve previous times
to make the transition from bottle to sippee cup but finally it worked at
this point—though Rachel admits that she doesn‘t know exactly what
made this work this time. Lawrence agreed to use the cup in order to
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participate in the program and continued to use it throughout the time of
the study. Rachel had to be very patient in making even this small
change, a change that most children go through at the age of two or
three that Lawrence was not ready for until the age of five.
Caring for the inner child: Douglas’ story. Rachel had earlier
experience with a child with special needs though it was different in that
Douglas was not diagnosed until he was older. Her first parenting
challenges were with keeping Douglas in daycare as a toddler. He was
kicked out of several due to his behavior difficulties and severe asthma
attacks. The doctor told her at that time that she would not be able to
work because her son was a chronic asthmatic. Rachel has a strong work
ethic and had enjoyed working as a teacher‘s aide before that point.
Consistent with findings in the literature that explores the subject of
mothers of children with special needs and work (i.e. Anderson, Dumont,
Jacobs, & Azzaria, 2007; Curran, Sharples, White, & Knapp, 2001), all of
the women in this study struggled with being able to maintain
participation in the work world. Rachel as a single mother was the most
strongly affected and she had to go on welfare during this time. Due to
welfare reform/welfare to work programs she had to go back to work
when Douglas was 3 ½ years old. More of his behaviors and his
breathing were under control at this point and he was able to be
successful at daycare. When he went to kindergarten she started to
notice that there were more significant differences than just the asthma.
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He was having trouble playing with other children and was getting
bullied. He also was eating in an atypical way where he would
concentrate on one food at a time and only eat that food three times a
day until the package was gone. Only at that point would he be willing
to switch to another food. Rachel found this unusual but as detailed
later in this section, she had been a picky eater herself as a child so this
did not raise any red flags for her.
Douglas continued to struggle with behavior at school. Though he
was doing well academically he was spending more time outside the
classroom than in it and she began to worry that this was damaging him
emotionally. Rachel considers one of her core duties as a mother to care
for her children‘s emotional needs. She carefully evaluates their feelings
and often makes mothering decisions with her children‘s emotional
needs in mind. At that point she felt that the school didn‘t care about
whether her son succeeded at school and that they were ―all for these
kids to be on the street.‖
Rachel herself comes from a highly educated family and education
is obviously important to her so this was particularly disturbing. Her
siblings are all successful professionals. She was working with Douglas
extensively at home to maintain his academic skills but one day woke up
and realized that she was being a teacher and not a mother and that she
missed being a mother. She decided from then on to shift her priorities.
She focused on making sure there was time for her children to have fun
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as well as work on their academic skills. She stated that ―when [they]
come home from school they want you to be playing or watching TV
together. That is their happiness.‖ She further noted that ―I know that
he succeeded academically but emotionally it was not a good thing what I
did.‖ From that point forward she worked on balancing the academic and
social-emotional aspects of parenting her sons. Her biggest worry about
her children at this point is that people won‘t understand them. She
feels as if they live on another planet and though she is willing to put the
effort into ―going to his planet‖ by assessing their emotional needs and
working with their unusual styles of communication and socialization,
she is afraid that others will not be as dedicated to bridging these
divides.
One of the primary ways that Rachel understands her sons is that
they have ―childish‖ minds. This allows her to hold onto the idea that
they will be able to mature into a more typical way of interacting with the
world. ―Really, they are smart. They are brilliant but until their minds
grow up, I wish somebody would be there.‖ (p. 39). For now, she is able
to be there for much of the time but when her children are away from her
they have to negotiate this ―other world‖ on their own.
Rachel’s eating history: “I feel the same thing they feel.”
Rachel has thought a lot about how to intervene with her children‘s
feeding challenges. She relates to their resistance to eating since as
mentioned above, she was a very picky eater as a child and to this day
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eats a limited variety of foods many of which she chooses based on their
texture. She says ―One thing I understand them really well. Very well.
Because I feel the same thing they feel.‖ Rachel‘s mother tried to wait out
her daughter‘s picky eating by presenting the same food over and over
assuming Rachel would eventually get hungry enough and eat it. ―My
mom used to do that [insist on certain foods] but once I said no, I meant
no, I‘m not going to eat it. So it was a hard time. If I said no, tomorrow
she‘ll bring the same food. I say no.‖ Rachel‘s mother continued to
present the same food day after day and eventually Rachel ended up
hospitalized due to hunger and dehydration. This happened more than
once and she continued to eat very little throughout high-school leading
her to be underweight and often ill. Rachel‘s own experience with feeding
difficulties lead her to a deep empathy for her sons. She is dedicated to
creating positive experiences around eating for them.
Finding help: “It is like a miracle.” Rachel was determined that
she would not use the same techniques on her children that her mother
used on her but she did not have alternative techniques that would work
with Lawrence. Therefore from early on she sought help with Lawrence‘s
challenges with eating. She wants her children‘s experiences to be more
positive around food and eating than hers were. In fact she was
determined to find the best help for eating difficulties. She informally
surveyed other parents of children with special needs and went to two
different regional centers to ask about what services were available for
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kids with difficulties with eating and where the best intervention could be
found. At the another regional center where her son was not a client,
she was able to find a professional willing to share her opinion on where
the best of this therapy was taking place—a local clinic I‘ll call Clinic
One. Here she tells of her fight to get these services:
Kim: And how did you find Clinic One?
Rachel: I heard about them from another regional center. I heard
about that.
Kim: Like, your coordinator told you there? Or you were…?
Rachel: No, it‘s not coordinator. I walked in.
Kim: You walked in.
Rachel: Yeah, and then, I don‘t know what to do. Just I‘m asking.
Kim: You just started asking whomever you saw, or…?
Rachel: Yeah, at the regional center. And then I went there, they
told me the list and everything. One lady, I don‘t remember the
name, the first day I met her, and when she told me, I said, oh,
OK…
Kim: She told you [about Clinic One?
Rachel: [Clinic One. She said, they are the best, but they are far,
she said. Where is that? It is East Town. OK, I‘ll drive. So, it‘s no
problem in that. I said that. And then when I called them, I asked
the regional center. My regional center, they don‘t accept me
either.
Kim: They don‘t accept the Clinic One?
Rachel: Yeah, Clinic One because it is far and they have to find a
vendor or something through - and then there is a paperwork
something to do. They don‘t want to do that and then they say first
no, and then I said, ―No, no way. My child, he needs this. I will do
that.‖ ―They‘re not going to accept you,‖ they said. ―It doesn‘t
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matter. I will go there. They will accept me,‖ I say that. Just, it is
like luck. And then I called the Clinic One, I‘m so happy. They said
they are full, they said they are not going to accept. Please, I just, I
begged them the first time. ―The regional center, they have to
contract with us,‖ they said. ―They‘re not going to do it, but, OK, if
they say OK, we will try with you.‖ And then I said, ―Fine,‖ I was
crying, I mean, all the time, just, there is no miracle. The only
thing, if I don‘t try, how I‘m going to do it? So, finally they said OK,
and then I went there. They are helpful, all of them. I mean, from
feeding, even the assessment. How they are done the question and
all of them, it is like, a miracle.
I believe that Rachel‘s statement here that ―There is no miracle‖ is her
assessment that she cannot do this without help and once she finds the
help, ―it is like, a miracle.‖ Rachel consistently seeks out professional
help with her challenges with her children.
In fact, this miracle was not always obvious in the treatment that
they received at Clinic One, but Rachel was desperate for some
alternative to the method her mother had used in trying to get her to eat.
Rachel: First when I started it was like a joke, to tell you the truth.
… It was a joke and then I said, these people [the feeding
therapists], they are playing with food and in Africa, people don‘t
have food. And what is the point? To play with the, you know, food,
touch it and then, just, you know pfft [makes throwing it away
gesture], I was, I thought they are playing. But, just, let me see
how it works. And I don‘t have a choice.
Kim: You don‘t have a choice because…?
Rachel: I don‘t know what to do and then I don‘t know [how] to
move from one to another. When he sees food he‘s vomiting. Just
in looking. So, what am I going to try? Even cooking is…when he
smell, he‘s vomiting. So, it [was] just Pediasure. Drinking five
times a day, sometimes six, seven times a day. That‘s not really a
good thing. I mean, he will be OK, but to me, when he grows up,
only drinking? Food is not drinking. What am I going to do? I was
desperate for that.
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Her desperation led her to keep an open mind. Playing with food that
you weren‘t necessarily going to eat seemed culturally inappropriate and
she really wasn‘t sure how it was going to help, but she had no other
ideas about how to get this child to eat and though drinking the
Pediasure might meet his nutritional needs, she wanted more for him.
Food was not drinking.
The therapists suggested that continued exposure, playful
interactions with food and progressing through a specific sensory
progression with food (tolerating on plate, touching, smelling, kissing,
licking, biting, chewing, swallowing) would lead to an increased comfort
level with the new food and eventual acceptance of that food as part of
his diet. She has fully embraced this theory and uses the techniques at
home on a daily basis.
Sometimes he doesn‘t want to eat the food, but I will give him a
different variety of food and ask him to feed me. ‗I‘m not going to
feed you, but you feed me.‘ I‘ll say that. To touch it, that‘s a big
deal. So he will feed me, I will eat it. Just to, you know, playing.
So once they touch it, they‘ll eat it. They will bite it so they will
smell it anyway when they give it to me. That‘s the way.
Rachel has found a way to get her children to eat that doesn‘t evoke the
painful memories from her childhood. It feels respectful to her because it
honors their discomfort, a discomfort she knows intimately.
Rachel’s health fails: “What I’m going to do?” Rachel has also
had her own health challenges. Last year she had a few incidents where
she was falling asleep while driving, she‘d become short of breath and
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then her eyes would become foggy. She‘d be unable to keep her eyes
open and would have to pull over. She went to a doctor for this and was
diagnosed with Chronic Fatigue Syndrome. At the time she was driving
over 80 miles a day to work, to pick up her children and take them to
their therapies and it had just become too much. She was petrified that
she was going to fall asleep while driving her children and would have an
accident. The doctor threatened to suspend her driver‘s license but she
begged him not to. She had to promise that she wouldn‘t drive at all for
one month and that she would stop driving on the freeways all together.
Of course this impacted her ability to access therapies for her children
and she had to stop working again. Luckily her feeding therapist agreed
to come into her home and the regional center was able to find a closer
clinic for some of the other services for her children.
Melanie’s Story: “I Just Didn’t Know”
Melanie was referred to me through a fellow therapist and friend
from a local agency. I met her at her home in Orange County where she
lives with her husband, son and daughter. Her children, Jabari a five
year old boy who has been diagnosed with autism and Sadio a four year
old girl who is developing typically were present for three of the four
interviews we did. The family lives in a condo in a suburb in Orange
County. The condo was spacious and well-lit from many windows. The
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space was very clean with a few toys sitting on the living room floor. For
each interview, Melanie was very hospitable. She greeted me with a bottle
of water and gave me a lap desk to write on. She periodically would
inquire toward my comfort. When I arrived for the first interview, Jabari
was sitting at the large dining room table finishing his breakfast.
Melanie explained that he is a very slow eater. He and his sister Sadio
were very eager to greet me. Jabari was telling me about his birthday
gifts as he had a birthday party the night before. He presented as an
eager social child with an odd quality to his speech. He tended to stand
closer than would be socially typical and to speak very loudly.
Melanie introduced me to the children as ―Miss Hannah‘s Friend‖
(Hannah is the feeding therapist who referred them to me). She said she
realized that she had seen me at the clinic though she hadn‘t recognized
my name. This made it a bit difficult to ask about her experiences there
at first, and she made many assumptions about our shared knowledge.
Luckily as our relationship progressed I became much more comfortable
asking questions about her experiences there and she seemed to be very
candid about both the positives and negatives involved in receiving
feeding therapy through that agency.
The interviews with Melanie are interspersed with interruptions
while she cared for her children. Throughout the interview the kids
interrupted when they needed assistance from her and there were some
times that they were very loud. During three of the four interviews,
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Melanie stopped to give the kids a snack. During the first interview,
Jabari ate a very large scoop of plain peanut butter- I‘d estimate close to
a cup- that he ate with a spoon. Sadio ate strawberry ice cream. They
ate quite quickly and independently which was a contrast to Jabari‘s
breakfast where he needed frequent prompting from Melanie to eat his
grapes and left off the top of his muffin. Melanie was very relaxed about
this and just interjected prompts while we were doing the interview.
Getting to observe these actual acts of feeding during the interviews was
an unexpected benefit of this study for me. I was able to see how
Melanie was managing the mealtime experience for her children even
though she was participating in the interview. I was also able to witness
first-hand some of the challenges related to eating that Jabari continued
to exhibit. An extended analysis of one of these exchanges can be found
in the seventh chapter.
Ending each interview was awkward for me as Melanie kept saying
―we can go longer‖ and that she was enjoying the process. I found I had
to stop when I was tired because it seemed that she would have
continued on for hours if I had let her. She repeatedly expressed how
much she enjoyed participating in the study saying things like ―I love
this! This is just talking about me, this is great! Can you come over more
often?‖
During the first interview, Melanie shared some information about
her own background. She is in her early 30‘s. Her mother is Caucasian
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and her father is African American. She was born on the East Coast and
came to California to do her undergraduate work in education, at which
point she met her husband, Zaheem. Zaheem is originally from Africa.
He came to the US in his early teens to go to college. After Melanie and
Zaheem were married they moved to a city in the mid-west for Zaheem‘s
job. Shortly afterward their son Jabari was born.
Reframing the story: From bad mother to a lack of
information. Melanie revealed that from the very beginning Jabari was a
challenging child to feed. She tells of how she immediately knew with
her second child that things were different and it made her realize how
much of a struggle feeding Jabari had been even from the very beginning.
Melanie: I just had all kinds of reasons why they were different.
But um, he didn‘t like breast feeding, I had to feed him first with
my finger and thinking back, I could have said there was a
problem, but for me, I was like ―I‘m a new mom, I don‘t know what
I‘m doing. This kid knows I don‘t know what the heck I‘m doing‖
You know.
Kim: Yeah.
Melanie: So he refused, he didn‘t like breast feeding, he didn‘t like
bottle feeding, he didn‘t like solid food. Everything with him was
always a fight. When he stopped eating it was because I was tired
of chasing him around the kitchen shoving food in his mouth
because that‘s really what it ended up coming down to and when
we went to his first occupational therapist she was like ―Yeah you
kind of were force feeding him.‖ And I was like ―Oh, I was?‖ Cause I
didn‘t think I was ‗cause I wasn‘t tying him down and pinching him
to get him to open his mouth or anything like that. But she was
like ―yeah, yeah you kind of were‖ and I was like ―OK, sorry! This
wasn‘t covered in parenting classes‖ (both laugh).
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Melanie repeatedly returns to the idea that she didn‘t know what she was
doing. She continues to struggle with whether to blame herself for his
early feeding difficulties or to assign the challenges to a more organic
process. The first occupational therapist assigned some of the blame to
her, but she has come to the conclusion that there were reasons she was
chasing him around the kitchen, it wasn‘t just her inexperience.
In an act of narrative sense-making, Melanie has begun to connect
the early stories of having difficulty feeding Jabari with his current
feeding problems related to autism even though those stories might not
sound particularly unusual to mothers of typically developing children
and did not strike her as indicative of a larger problem at the time.
These experiences were different than with her second child who was
easy to feed and she has assimilated them into a larger narrative of a
child with whom she had to fight at each feeding transition. After an
interruption to the interview I asked her to tell me more about his early
feeding.
Kim: So go back to, you had to start feeding him with your finger?
Melanie: Yeah, in the hospital, they had us, how did they have us
do it? Was it formula? I think we were using formula. Where they
were doing it through this little teeny tiny tube that I would tape to
my finger and I would just put my finger in his mouth and that
was how he would get nourishment in the very beginning, cause I
guess in the beginning babies aren‘t really interested in eating,
they‘re just kind of like ―Aaah‖ they just want to sleep but you have
to feed them at the hospital. This was at Hospital Name. And so
they just had me put my finger in his mouth and he would suck off
my finger and then eventually I put my finger closer to my breast
and by the time we left the hospital we had it down, we were OK.
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Kim: Right.
Melanie: But I uh, but him not eating I attributed to that I didn‘t
know what the heck I was doing, rather than that he had feeding
issues.
Kim: Gotcha
Melanie: because no one raised any flags for me so I‘m like, they
know what they‘re doing, I don‘t know what I‘m doing um and then
I went to Target, this was when he was about a month and a half
old, so he was breast fed exclusively at the beginning and I said to
my husband, ―You know we need to start doing bottles. You know
the books all say ‗bottles work best with the father rather than the
mother‘‖ So my husband took off his shirt and was holding him
near his chest to do the bottle and he said my son screamed for an
hour and a half and he was starving. He screamed for an hour
and a half rather than take a bottle to the point where he screamed
himself to sleep and um that was, that was shocking.
Neither of these stories would be particularly remarkable in a
typically developing child. Breastfeeding doesn‘t always go smoothly at
the beginning and transitioning infants from the breast to the bottle is
notoriously difficult and thus the subject of many popular press
parenting theories. Here though they‘ve become part of a larger narrative,
a narrative where Melanie is assigning these early difficulties to an
organic feeding problem rather than her theory at the time that it was
her own inefficient mothering, her not knowing ―what the heck‖ she was
doing.
Melanie: And then when I came home and he got the breast. And
so transitioning to bottle was, was a big deal and we, at first we
thought it was the bottle so we had like fourteen different cans, not
fourteen; we had four different cans of formula open at one point in
our lives. Cause we were like ―this doesn‘t work, let‘s try this, that
doesn‘t work, let‘s try that‖ cause we would try, we tried just in
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case he was lactose intolerant we tried the soy formula we uh we
tried Simulac Soy, the Simulac regular, Enfamil and there was one
more I think maybe like a generic brand that we had open cause
we were like, ―Let‘s just try everything.‖ We didn‘t know. And then
um so that was it sucked. I‘m not going to lie.
Melanie frames the entirety of this early struggle as a fight; a fight
to get this child to accept any food, any transition. At first these fights
worked but eventually, like Rachel she came to a battle she couldn‘t fight
alone. She tried to improvise, mixing foods together and trying to
disguise foods but Jabari eventually even stopped accepting that.
Melanie: But the initial was a fight. Even getting him to do the rice
we would, we would, I mean basically it was just liquid with a little
bit of rice, but it was the spoon. That was a fight but eventually he
got, he accepted it and everything, every major food period in his
life, it was a fight and then he accepted it. It was a fight, then he
accepted it until the point where it got to it was just always a fight
and never accepting it to the point where I would buy tons of
different types of food and just give them away.…. So I would just
buy all different kinds of baby food to figure out ―what is this kid
going to eat?‖ to the point where he got down to where he was just
showing a preference for the sweet stuff so we would put a teeny,
teeny, teeny, teeny bit of vegetable and surround it by applesauce
and that was the only way I could get him to eat. ‗Til eventually he
stopped even taking that.
Once he ―stopped even taking that‖ Melanie found herself in an even
more vulnerable place of not knowing what to do. This was just before
Jabari turned two. Now that he was rejecting even the former preferred
foods she found that he was eating ―nothing.‖ Fortunately he was still
taking milk and juice from a bottle but to Melanie these liquids didn‘t
count as real food.
Melanie: [Prior to this time] He was eating baby foods, he was
eating pizza, he loved my tofu fried rice, loved it. I‘m a vegetarian
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so I, they were, they‘ve been exposed to tofu from early on. He was
eating like pizza breadsticks, pasta, tofu, rice; I‘m trying to think if
there was anything else. Oh um, Cheerios, graham crackers,
cookies, gosh I haven‘t thought of this in a long time. Bananas, he
loved bananas. He had a banana every night right before bed. So
he was eating and then one by one he just kind of stopped and it
just kind of, he just phased things out. So first it was this gross
chicken and broccoli that it was stage two Gerber, it was
disgusting, I had a hard time feeding it to him so I didn‘t mind that
he gave that one up. Um he just wouldn‘t eat it and then I would
have to mix it with applesauce and then he would eat it and then
he would even see the jar and he would just walk away from it and
then um one by one he just phased everything out till he was only
eating the baby jar fruit and that was it and that was all he was
eating. And then finally he just stopped eating so we were just
doing juice and milk because we didn‘t know what else to do.
During the interviews she talked about this point in time several times.
As noted earlier, she expressed over and over again that she ―just didn‘t
know what to do.‖ Though she never said so directly, I interpreted this as
a feeling of helplessness. She knew that what they were doing wasn‘t
working, but she had no other ideas. Unlike Rachel, the professional
help, her pediatrician and a parenting class, that she sought out was not
helpful at this point. She asked friends and family for advice but did not
find it useful. Her first occupational therapist framed what they had been
doing prior to the point where she stopped pushing the food as ―force
feeding.‖ Melanie told this story multiple times and it seems to have had
a strong impact on her.
Melanie: So he refused, he didn‘t like breast feeding, he didn‘t like
bottle feeding, he didn‘t like solid food. Everything with him was
always a fight. When he stopped eating it was because I was tired
of chasing him around the kitchen shoving food in his mouth
because that‘s really what it ended up coming down to and when
we went to his first occupational therapist she was like ―Yeah you
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kind of were force feeding him.‖ And I was like ―Oh, I was?‖ Cause I
didn‘t think I was cause I wasn‘t tying him down and pinching him
to get him to open his mouth or anything like that. But she was
like ―yeah, yeah you kind of were.‖
Though she hadn‘t labeled it force feeding, she knew it wasn‘t working
and it certainly wasn‘t enjoyable for either one of them. Returning to this
time during another interview, she shared how emotionally challenging it
was for them both.
Melanie: Yeah I felt like chasing my son around and getting him
into a corner to get him to eat a bite of carrots was no longer
enjoyable for either one of us. So that was it. Oh and ‗cause he
would eat it and spit it back up so you know and then he would
fight and scream and he‘d cry. He‘d cry to come into the kitchen.
He‘d cry. So obviously this just wasn‘t working and I ended up
going… I had no idea what I was doing.
Melanie seemed haunted by this time and how her own lack of
knowledge about how to treat feeding difficulties impacted how she
treated her son. She acknowledges that her sources of information, the
doctor she was seeing at the time and even the parenting classes she
took didn‘t help with this area but she still feels ―tremendous amounts of
guilt‖ over it.
Melanie: Had I known then what I know now I wouldn‘t have even
bothered doing that. I would have started with that whole sensory
progression right away but I didn‘t know.
Kim: Of course.
Melanie: And even, we took uh um, when did we take a parenting
class? We took a parenting class after he was diagnosed but even
that didn‘t cover all of this stuff you know?
Kim: Um hm.
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Melanie: It wasn‘t until we were in it that we were like ―Oh, this is
what we did wrong!‖ and it sucks. And someone said you need to
give up…, one person at the autism conference said ―yeah you‘ve
done stuff wrong, but you need to give up the guilt. You need to
stop beating yourself up and stop berating yourself because none
of it‘s going to help your kid.‖ And I‘m like ―OK‖ [very chipper
cheerful voice] (both laugh). And so even though I do, I feel
tremendous amounts of guilt, I had no idea. I had no idea.
This back and forth between the feelings of guilt and the
acknowledgement that it was a lack of knowledge that she could not have
had is a constant refrain in my interviews with Melanie. One of the
stories that evokes it most strongly is her story of getting Jabari
diagnosed with autism.
Getting the diagnosis: “It was horrible. But good. In a horribly
good way.” Soon after Jabari stopped eating the family moved from a
city in the Midwest to Southern California. This move brought them
back into a place where they had more social support and it was in
California that they initiated most of Jabari‘s therapy services. In the
Midwest city their pediatrician had expressed concern about Jabari‘s
speech and so they got a speech assessment that revealed that Jabari‘s
speech was quite severely delayed. So when they got to California they
started privately paying for speech therapy. At the same time, they met
with a new pediatrician who told them that ―I think your son might be
autistic.‖ Melanie and her husband initially dismissed this as a
possibility.
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Melanie: We were like ―What?‖ ‗cause we were in speech services,
so we knew there was something off about his speech, but we had
the Rain Man in our head.
Kim: Yeah, absolutely.
Melanie: and that was it. No one we knew had autism. A girlfriend
of mine had, her son has Aspbergers, but even that was still, we
had no idea.
Kim: Yeah.
Melanie: So umm…I keep hearing that a lot. (in a high pitched
voice) ―We had no idea, we had no idea!‖
Rain Man, the 1989 movie about a man who is a prodigious savant was
the only image Melanie and her husband had of autism and clearly their
son didn‘t fit into this model. Of course since this movie featured a man
considered to be a prodigious savant, an extremely rare condition
affecting a small number of people with autism today (Treffert, 2009), it
makes sense that they would not recognize that their son might indeed
have a different form of autism. Melanie again emphasizes that this was
about not having the correct information.
Kim: Right, and, um…so you‘d just come out here, you see them,
you get the diagnosis
Melanie: Um hm.
Kim: That had to be pretty shocking.
Melanie: Yes and no. When she said that, I said to my husband
―This woman‘s crazy! She doesn‘t know my son.‖ My son…cause I
had the Rain Man in my head. I, I, I, Now I can spot Autism like a
mile away but then I had Rain Man in my head. So he was two
and she said ―I think he might be autistic.‖ So my husband and I
were like ―whatever.‖ And we‘re both the type of people where if you
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tell us something, even if we don‘t believe you, we‘ll look it up first
and then we‘ll make our opinion based on that.
The doctor and their speech therapist both pointed the family to the
Regional Center and Jabari quickly began to receive a variety of therapy
services while the family explored the possibility of this diagnosis.
Melanie threw herself into investigating.
Melanie: My sister had said something about ―should he be talking
more?‖ and I was like ―whatever, they don‘t know‖
Kim: Yeah.
Melanie: Ummm…and my dad had, like I said, my dad had said it
before, but I thought he was being an alarmist. So when she [the
doctor] said it, we looked it up online, and let‘s say there were like,
the website we looked at, there were like 10 things that your child
was autistic and he had like 7. We were like ―Ohh…they might be
right.‖ So we still didn‘t have the diagnosis officially.
Kim: Right.
Melanie: Then I went to an autism conference in February and
thing after thing they were telling me, I was like ―That‘s my son.
That‘s my son. That‘s my son.‖ I mean I was just crying at the
conference, it was horrible. But good. In a horribly good way.
To Melanie this was both horrible and good because having a diagnosis
gave her the ability to make a plan of action. She stated that both she
and her husband were of the mindset ―Let‘s name it so we can get rid of
it.‖ They took Jabari to a nationally recognized program to get an official
diagnosis. Here she tells the story of getting the official diagnosis:
And um…so she went over the reports, went over the
recommendations and she kind of was like, ―You know he is….‖
And she kind of looked down. ―Autistic.‖ And we were like ―OK,
what‘s our next step?‖ And I think she was kind of surprised.
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Taking the next step: Working to fill in the blanks. The work to ―get
rid of it‖ included regular occupational therapy sessions, some of which
were aimed at addressing Jabari‘s feeding challenges though this turned
out to not be enough.
Melanie: Um...and also his feeding was more alarming than they
had seen in previous cases. At the time we weren‘t with Clinic B
[Clinic that specializes in feeding services] we were with another
OT, Clinic D [OT agency] and she was working on OT overall and
would occasionally do feeding rather than a targeted feeding
therapy. His, the infant toddler teacher, Molly, um at his IEP
meeting? IFSP meeting? I don‘t know, one of those meetings.
Kim: Right.
Melanie: She made a point of saying, ―Melanie, he needs to be in a
feeding therapy‖ It was his IFSP that transition meeting we had
with Nationally Recognized Program so he was 2 years, 9 months
when we started with you guys. She made a point of really saying
it and I was like ―OK, I‘ll do it‖ So we dropped, cause we had been
with Clinic D and he was eating for them, but it was like six bites
of pudding and that was December and he hadn‘t eaten anything
else since. And she was kind of like, not force feeding but she was
like putting it on his lips and he would lick it off, which for us was
success but Molly was like ―No, he can do more.‖
The story of the six bites of pudding is actually a painful one. Melanie
told the full story twice in our four interviews and referenced it two other
times.
Melanie: And at this time he was in OT. Not with you guys. He
was with Clinic D and she got him to eat six bites of chocolate
pudding. It was right before Christmas. I think it was…I want to
say Christmas 2006. I‘d have to look at a calendar to be sure.
(Kim: yeah.) Um…she got him to eat six bites of chocolate pudding
and I was just floored.
Kim: And how did that happen? Were you, was it…
Melanie: No I wasn‘t there.
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Kim: so that was a session you weren‘t in?
Melanie: Right. Most of the ones at Clinic D, I never went in. She
preferred to go and work alone. Once he got used to going with her,
he would go alone and my daughter and [I would stay in the
waiting room.
Sadio: [Daddy, daddy!
Melanie: Because she can be [whispered-a bit of a distraction.] I
said a bit of a distraction and then realized I can‘t whisper to you!
Kim: No. (both laugh)
Melanie: So that was just fantastic. And I would run out…you
know whatever he would try I would run out and buy lots of it and
try it at home and it didn‘t work. Always failed.
These failures hit Melanie hard. When I asked for more information
about this story after an interruption she went on to elaborate on the
particulars.
Kim: Hold on just a second, let‘s concentrate on that one, so do
you remember that day like standing in the waiting room and she‘s
telling you about it?
Melanie: Yeah.
Kim: How did that happen?
Melanie: Well she [the OT] came out and she goes ―He just gave me
the best Christmas present ever!‖ and she was, she was an older
woman and she was just really excited about it. She goes ―He just
gave me the best Christmas present ever.‖ And I said ―What?‖ And
she said ―He ate six bites of chocolate pudding!‖ and I said ―He
did? Wow!‖ And I was like ―Good job Jabari!‖ and he just ducked
his head a little bit. And of course I ran out and bought it.
Kim: And so on your way home? Did you buy it?
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Melanie: Yeah, yeah, that‘s right. ―He‘s eating it? Give it to
him!‖…. Um, it didn‘t work. Because she was just having him eat
it. As opposed to the smelling and the licking and the tasting and
the touching and all that other stuff that Hannah [the feeding
therapist they worked with later] was doing.
At this point, Melanie had not been given any new techniques for
getting him to eat. She wasn‘t in the session and so did not get to
observe how the therapist had convinced Jabari to try the pudding and
when the therapist comes out to tell her about it, to Melanie‘s
recollection she doesn‘t elaborate as to how it happened. She was ―just
having him eat it.‖ It wasn‘t that Melanie hadn‘t been trying to get her
son to eat for months before this, so without a new approach, a new
technique of some kind, it was not going to work for her at home. Later,
Hannah, the occupational therapist who specialized in working with
children with feeding problems, would show her a new model for feeding
her son, one that focused on moving along a sensory progression, but for
now, all Melanie could do was buy that food and try to feed it to Jabari.
Melanie: And she wasn‘t doing all the sensory stuff. So and so it
never happened again with her and we ended up leaving that place
in April. She had a personal tragedy so…her husband died.
Kim: oh.
Melanie: So um and then um she has her own children who have
special needs so she was, she, sessions were missed, sessions were
with other therapists and it just wasn‘t good for Jabari.
The fact that this therapist started missing sessions actually turned out
to be a good thing for Melanie though she regrets that it came from a
place of the woman having a personal tragedy. This therapy wasn‘t
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working and when I asked Melanie for more information she elaborated
on the emotional impact of this not working for her and Jabari. She went
back to the description of this being horrible and again debated the role
of her own guilt and her lack of knowledge.
Kim: Right. So on the, the pudding day. [Melanie laughs] When
you, you stop, you buy the pudding on the way home. [Melanie:
yeah, yeah] Did you immediately try to feed it to him?
Melanie: Yeah, it didn‘t work. It didn‘t work.
Kim: What did he do?
Melanie: You know I don‘t remember. I don‘t know if he even came
into the kitchen.
Kim: Yeah.
Melanie: It was horrible. It was awful because I should be able to
get my child to eat and it‘s that whole, in my family it‘s that [uses
exaggerated accented voice] ―Oh you‘re getting skinny and not
enough stuff, not enough meat, on your bones!‖ type of mentality
you know?
I would suggest that this was horrible partly because it challenged one of
the core ideas Melanie holds about mothering. The suggestion that
getting skinny, not having enough meat on your bones is a bad thing has
to do with health. Not being able to get her child to eat perhaps means
that she is not able to keep him healthy and this challenges a core tenet
of Melanie‘s ideas about mothering. As I‘ll discuss in a later chapter,
Melanie is very concerned with Jabari not being hungry. To her this is
one of her most important jobs as a mother.
Melanie: from my Dad‘s side, not my Mom‘s side but my Dad‘s
side. And it‘s horrible because it was this, it was, I didn‘t know
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what I was doing. I just didn‘t. And that‘s not a comfortable
feeling at any age, but especially when you have a little one
depending on you. So I‘m trying to think of actually…We went
home. I remember I was so excited because I told my husband.
We went home. I told my husband and I‘m actually trying to
remember what he did. I remember it wasn‘t successful because
after a couple of times I didn‘t try it anymore and I don‘t remember
if it was just a no or a ducking of his head …. You know I don‘t
even know. I don‘t even know. I remember it wasn‘t successful
but I don‘t remember the details. Probably because I don‘t want to
remember the details.
…. But it was that whole, um, specifically the pudding day. Other
people could get him to eat and I couldn‘t and it‘s just, it‘s not how
it‘s supposed to be. I mean you have in the…I mean for me, I had
in my head a vision of how motherhood was supposed to be. You
know I‘m gonna wear the apron and have the flowery dress on and
my kids are gonna come in and we‘re all going to be floating and
happy and great and it just wasn‘t like that. Real life isn‘t like
that.
Melanie‘s voice during this passage is full of pain. The therapist had
been given a Christmas gift but Melanie didn‘t get one. The victory of
him eating pudding was one for the therapist, not the family. By
bringing up that this is an especially horrible feeling when ―you have a
little one depending on you,‖ Melanie is emphasizing that this is a failure
of her mothering. To not be able to feed a dependent child, to meet one
of his most basic needs violates the protective role that she feels a
mother must play. The failure to be able to replicate someone else‘s
success at getting him to eat at home that followed made Melanie
question her vision of motherhood. She then told me how she had
realized that her mothering experience with Jabari wasn‘t going to be
what she expected. She questioned her own competence then and
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continued during the interviews to struggle with taking on the guilt, the
blame for not knowing.
Melanie: …. But it was that, it was that whole thing of by this time
I realized that I didn‘t know what I was doing with him. …. And
by this point he was in all the intensive therapies so we were
learning
Kim: Yeah
Melanie: But we still didn‘t have it.
Kim: Yeah, yeah.
Melanie: No one likes feeling like they‘re failing and that‘s what it
was. I just felt like…I just felt like a failure as a mother.
Even though they were in intensive therapies, this issue—the feeding,
wasn‘t really being effectively addressed and it led Melanie to question
her ability to mother this child. Melanie goes on to explain that her
usual method of dealing with challenging situations was to either work
harder or give up but because she didn‘t have the correct information it
didn‘t matter how much work she put in, she wasn‘t going to be
successful.
Melanie: Everyone has this ideal of motherhood and that‘s what I
was trying to live up to and I wasn‘t. I just wasn‘t. You know?
Kim: Um hm.
Melanie: And I‘m the type of person where if I can‘t do something I
either give up, which I can‘t do with motherhood, or I keep working
harder. You know and that‘s what this was. I had to keep working
harder so when we made that, I don‘t want to say her father dying,
her husband dying was a good thing, but it was a good time to
make that transition to Clinic B where it was, it was um, where the
parents were more involved in the therapy sessions ….(children
interrupt)
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Clinic B was more successful because she was involved in the therapy
sessions. She was given the opportunity to get the information she
needed to be successful. Interestingly, Melanie chooses a school
metaphor to compare this feeling to. This fits with her mothering theory
that if only she had all the information, it would have been different. If
only she could have learned what she needed to know she would have
been able to get her son to eat. Once she got the information from going
to Clinic B she was able to be successful.
Kim: So this, so you said you couldn‘t give up and…
Melanie: Right. Right, right, right. I couldn‘t give up and I wanted
to keep trying harder but it was just that whole it was like I was in
a physics class getting a D and wanting to get an A and I was still
getting a D no matter how hard I tried. …. Just that whole
continuing feeling like I was failing.
Kim: And no matter what kind of work you did at that point,
because you didn‘t have the answers…
Melanie: Right. Right. Especially since I had this whole lingering
guilt that this was my fault. Cause I, I‘ve talked to Hannah a little
bit about this too. I do. I still, if you ask me today ―Do I feel like
it‘s my fault that my son has feeding problems?‖ I would say ―Yes,
100%. I feel like it‘s my fault.‖
Kim: And why is that?
Melanie: Because I didn‘t know what I was doing when he stopped
eating food. I should have run to a therapist then but I didn‘t
know.
This strikes me as a dissonant point in Melanie‘s story. She feels guilty
for not knowing, but she acknowledges that there‘s no way she could
have known. Even when she did ―run to a therapist‖ the first therapist
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who was working on this was not really able to help. How could Melanie
have known which therapist to run to? Perhaps this is linked to the fact
that the first time she called Clinic B on the recommendation of Jabari‘s
pre-school teacher, her call was not returned and she did not call back or
further pursue getting services there until his classroom teacher insisted
that she call again.
Melanie: And that‘s the thing that I…Not my mission but like when
I come across someone like that I try and prevent them from going
through the same things I had. We‘re very open about Jabari
having autism. I‘m don‘t even know…I never….We‘re very open
about it with our friends and family now. I‘m never sure whether
to say has autism or is autistic. I…it‘s a play on words.
Kim: yeah.
Melanie: But we‘re very open about it. It has come to the point
where people have used me as a resource. I shared with you my
sister, um I think I shared with you my sister.
Kim: Yeah you did.
Melanie: And um I have another friend in Massachusetts. I‘m very
open about it because I‘m hoping that by being open I can save
someone else just a little bit of the pain that I went through (voice
breaks). It was…it was… I‘m about to cry now here. It was
horrible. It was um…I didn‘t know where to go to for answers
because I didn‘t know there was a problem. You know?
Kim: right.
Melanie: And especially when we were in mid-west city. Oh my
gosh! He just started cutting out. My husband didn‘t know, I
didn‘t know and no one else I knew had this. It was brand new.
And when we came out here and Dr. Geery was like ―I think he‘s
autistic‖ and we were like, (makes skeptical face) you know that
was the first time she had like and later on I actually ended up
thanking her and I told her, I said ―I thought you were crazy. We
were going to leave you.‖ And she‘s like ―Yeah, you know it‘s just so
hard for parents because they have a child who‘s not talking, who‘s
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not eating and no one has told them why.‖ She‘s like ―As soon as
people tell you why, you can do something about it.‖ And that‘s
where I, that‘s where my, um, frustration came from is because I
still do feel like it was my fault because had I done things
differently it wouldn‘t have gotten as dramatic as it did. (Kim:
Hmmm) But….what can I do now?
Kim: (softly) Right, yeah.
Melanie: (laughing) Until they invent a time machine and I can go
back and tell that Melanie to stop being a Dodo head, I just have to
move on.
Once Jabari started specifically focused feeding therapy, things did
change. Melanie was invited into the sessions and taught techniques to
help her help Jabari to eat.
Melanie: And I like the fact that [Clinic B] included us in the
therapy. In Clinic D, I sat out in the waiting room with Sadio. And
usually walking around in the complex area, but I like that you
guys included us. 'Cause when she very first said, "Oh, no, you
come in, too," I was like, "Oh, okay," you know. And the nanny
would come in with us. And when my husband was there, he
would come in with us. And I like that because I was able to learn
along with Jabari, which I kind of needed to learn just as much as
he did. I did need to learn just as much as he did. Versus the other
place, where it was kind of like, "Here's what we did today. We did,
blankety blank blank blank."
Melanie‘s choice to use ―blankety blank blank blank‖ to represent what
the first therapist reported to her is an interesting one. My interpretation
is that it strongly represents her sense that she was learning nothing
from that time. She was left in ignorance, with no new ideas to try. By
bringing Melanie into the therapy and helping her to ―learn along with
Jabari‖ Hannah was addressing the painful not knowing that had been
such a challenge for Melanie, literally filling in the blanks. At the same
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time Jabari moved into a classroom where they really focused on helping
him with his eating. The school personnel worked closely with Hannah
the feeding therapist and listened to her and to Melanie. This created a
―magical place‖ for Melanie and Jabari.
The director of the program and another special education teacher
came down and watched a feeding therapy session with him then
Hannah went up there and made a bunch of suggestions. They
took the suggestions (laughs) and it was just this magical place
where they listened and they really cared. It was the first time in
my educational experience where they truly cared about the child.
And he, we were, if he came across something that he didn‘t want
to eat, they knew what to do. Hannah did the Kay Toomey sensory
progression chart for them and they listened.
The sensory progression chart that Melanie mentions has become an
important artifact for her. She showed me a copy during one of our
interviews and mentioned that she shares it with other parents and all
the professionals in Jabari‘s life. The chart was created by Kay Toomey
and is often disseminated in her continuing education classes. It details
the ―Steps to Eating.‖ These steps start with tolerating being near the
food then move through touching, smelling, licking, etc. Interestingly,
the same chart comes up in Jen‘s stories as well though she and Melanie
go to different clinics for intervention.
Another significant moment for this family came when they were
able to get Jabari to accept grape flavor in his mouth in a speech therapy
session. The memory of this is one which cues Melanie to realize how far
she‘s come:
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But it's good for me to look back on that to realize, oh, my gosh,
there was a time when I was writing that he accepted grape flavor
on his lips, and that was our big accomplishment. Like I forgot.
After you go through it, you forget. So, when I was looking at these
emails, I was like, "Oh my --" I have 357 emails, just in the Jabari
folder, not in the sent folder, just in the ones that people replied
back to me. So, I was looking at that going, "Oh, my gosh, how far
have we come?" And it really hasn't been that long. His year
anniversary of starting to eat again is coming up in November. I
mean, it really wasn't that long ago that we were like, "He allowed
his speech therapist put grape flavor on his lips." 'Cause before, we
could never give him medicine. I mean, people don't realize that
that's how bad it was. When he had bronchitis, we couldn't -- it
was a hit or miss whether or not he was going to get his medicine
because he wouldn't take anything in his mouth. So, if you think
of how much you get in your mouth, that's the big deal. I don't
know if you know, they have suppository fever things? You know
how we know that? 'Cause my son wouldn't take Tylenol in his
mouth, so we had to find another way to get him -- there's
something called Fever All, you keep it in your refrigerator, and it
goes up the other way. Why did I have to know that? Because my
son wouldn't take Tylenol. I mean, the doctor would prescribe
something, and I would ask, "Does that come in suppository form?"
"No, it's liquid." You know?
Kim: Yeah.
Melanie: And things like with bronchitis and pneumonia, where he
had to have the antibiotic, it was actually to the point where it was
-- the fact that when he started taking the grape flavor in his
mouth, it was like, wow, we can give him medicine that way. That's
how bad it was. And Melanie now is like, "Oh, yeah." I mean, I just
gave him cough medicine this morning. You know and I didn't
think about it. It's good for me to be part of this to stop and reflect,
to say, "Oh, my gosh, [it was really bad, and it's really good now."
For Melanie though things continue to change and Jabari continues to
develop she is able to see where he is today as a reflection on where they
have come from. Things were really bad, but now they are really good.
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Jen’s Story: Waiting for Him to be Ready
Jen is a woman in her early thirties. She was referred to me
through a local OT who specializes in treating children with feeding
problems. Jen has a very close relationship with the referring therapist
and credits her with helping her family greatly. When I first spoke with
Jen on the phone she eagerly launched into the story of her son
Benjamin‘s diagnosis with autism. Benjamin, at age four is the youngest
of her three children. The older two are teenagers, one of whom lives out
of the house. During the initial phone call Jen used a style that seemed
familiar to me as a clinician; it seemed to be a practiced report. I
hypothesized that she was trying to prove to me that she qualified for the
study by telling this story. I reassured her that she would be a good
candidate and we arranged to meet at a bakery/coffee shop close to her
house. I would later learn that Jen was very used to giving clinical
reports both from her work and her experiences with the medical world.
My first impression of Jen was that she was a very well dressed
beautiful woman. Her makeup was perfect and she was carrying a
designer handbag. Jen lives in a small house in a suburban area of a
major city. Her home is clean and during the time I was there she kept it
very closed up with the shades drawn and doors shut. I only ever saw
the living room and dining room clearly though I was able to glance
through to the kitchen. In these spaces, there was very little evidence
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that a child lived in this house. There were no toys or children‘s things
visible. The tall dining room table with bar stools and the light colored
couches in the living room gave me the impression of adult space. The
walls were covered in vibrant paintings with traditional Mexican themes.
Strikingly, in the fourth interview, Jen began to talk about this and how
she had come to the realization that she needed to let Benjamin make
messes, that his development and the mere fact that he was eating was
more important than her furniture. As she put it:
This is not our keeping furniture; this is our raising the kids
furniture. And I‘d rather have a stain on my sofa and have him eat
Jell-o, self feed, ‗cause he‘s still working on the, the compa--, um,
eye hand coordination. Controlling the spoon, he‘s not really good
at it, because he prefers to finger feed. But, I let him finger feed,
because he‘s eating. I don‘t care how he eats.
Jen initially appeared quite nervous about meeting with me. During the
first interview she spoke very rapidly and presented a very positive
picture. No fact that she presented was untrue but she left out some
very significant details that as she revealed them in later interviews
significantly clarified this family‘s story and brought it into a more
ambiguous but ultimately more realistic picture. One of the most
striking details that Jen initially left out was that both of her older
children have special needs due to severe abuse by her former husband,
their father, which left them both with traumatic brain injuries (TBI).
Her daughter had been living in an institutional setting due to behavioral
and emotional challenges related to her TBI. This meant that Jen was
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very familiar with the world of special education even though more than
a decade had passed since she had begun getting services with her other
children. I believe that Jen needed to know she could trust me before
she was willing to share some of the painful details from her past. Each
interview thereafter was more revealing about some of the hardships Jen
and her family have faced and helped place some of their triumphs into
context.
Jen‘s story is very complex and she is an excellent storyteller, I
could easily write hundreds of pages about her and her family. After
much analysis, I have chosen to pull out three areas of her story to frame
this chapter. The first is the story of Benjamin‘s diagnosis and Jen‘s
work to understand and communicate who Benjamin is. This work is
something I have seen in several of the other mother‘s stories and seems
to be particularly relevant to children with autism who often cannot
communicate in typical ways.
The second section focuses specifically on what Benjamin eats.
Over the course of the seven months between my first and last interviews
with Jen Benjamin went through several important eating transitions
and the differences in how Jen handles each of them illuminate as much
about how she is changing as a mother as they do about how Benjamin
is changing as an eater. This section also serves to chronicle how
Benjamin‘s eating challenges impact Jen and her family‘s everyday
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lives—a topic which is further explored in the chapter entitled Beyond
Picky Eating later in this volume.
The third section is devoted to an intervention philosophy that Jen
has embraced for working with Benjamin. This philosophical choice
interweaves with Jen‘s theories about mothering and influences how she
interacts with Benjamin and indeed her entire family. Each of these
sections contribute to a larger picture of who Jen is as a mother and how
her story of mothering Benjamin is intimately tied to her ability to get
him to eat.
The diagnosis: Who is this child? Jen first suspected something
was different with Benjamin when he was about 6 months old. She
revealed that her first clue was his difficulty with transitioning to baby
cereal in his formula or breast milk. He resisted even the smallest
amount added to the milk. When she tried him on baby foods he pushed
them out of his mouth and pushed her away. This was very different
than her older children had been. She notes that ―they were just
voracious little eaters. They were curious about food, they were
interested in food. And Benjamin just had absolutely no interest in food
whatsoever. Not even candy or anything that you would think normally.‖
As I will detail later in this section, Jen spends a lot of time trying to
divine what Benjamin‘s internal state might be. Therefore, his failure to
seem to enjoy eating even from the very beginning is important to Jen.
Benjamin was also slow to meet his developmental milestones and this
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was worrying to Jen. She brought up concerns with his pediatrician but
her concerns were dismissed—a common complaint of the mothers in the
study.
Kim: and was your pediatrician concerned about that?
Jen: Um no, they were just like, ―you know he‘s a late bloomer.
Don‘t worry about it. He‘ll be fine. Um keep trying to introduce new
foods‖ and something else, some, some gut feeling. And I had
never really known anyone with autism, I knew it was something,
it was a severe disorder or diagnosis or whatever they call it. Just
something inside me knew that Benjamin might be autistic. Only
because, he didn‘t have, there was no interest in food, the delayed
milestones, no talking. I mean we were barely getting ―aaahh‖ out
of him at that time. I mean it was almost a year, year and a half no
talking and when we did try to like force feed him a little bit he had
a severe gag reflex so something inside of me just told me ―I think
he might be.‖ I don‘t know why, I just thought he might be autistic.
Even when she turned to a specialist she was not given any meaningful
answers:
And then they sent him to an upper GI specialist and at the point
that he was going to the upper GI specialist he started
experimenting with crackers and he liked crunchy. And so we were
like really excited. He was eating Saltines and Goldfish, like
crunchy/salty. So the upper GI specialist who evaluated Benjamin
said ―no physical issues are impeding his feeding.‖
The last statement is one she questions to this day as it later turned out
that Benjamin had severely swollen tonsils which when removed seemed
to make a huge difference in his eating, sleeping and speech.
Luckily Jen had other resources to turn to. She had been working
in a child abuse prevention program and so had interacted with the
Regional Center system.
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And then I called Regional Center. I do social work and child
advocacy for work so I think that‘s what helped me really get
Benjamin services really young. So I called Regional Center right
away and I said ―You know what, I think my son might be autistic
and these are the things that are happening‖ and so it took them
forever to get us through the process. We got the intake and they
got the medical reports and they felt that he qualified for early
intervention services. Still no diagnosis of autism though. Not
from anyone. (Kim: yeah) And so he started receiving behavior
modification, speech and language twice a week, OT twice a week
and PT once a week. Lots of services for this little guy.
Finally someone was listening to Jen‘s concerns and providing her with
suggestions to help with Benjamin‘s eating.
Jen: He had an OT consult and a nutrition consult at Clinic C and
we discussed his very limited eating repertoire which still consisted
of formula, multi-flavored vitamins and carnation instant
breakfast, like protein mix. Yeah.
Kim: How did you start that? Was that…
Jen: After Clinic C suggested that I add the, to give him some
protein and some other like the potassium and things like
that…And he liked it. So he responded well to that.
Getting suggestions such as this allowed Jen to begin to move forward
but at this point she still had never had the diagnosis of autism formally
confirmed. She and Hank were not concerned with it though as long as
they were getting services to help Benjamin. She said ―our decision was
‗call it gangrene, call it whatever you want but just give us the service.‘‖
They also got at least one conflicting opinion. When they took Benjamin
to see a neurologist he refused to use the label of Autism and this is
something Jen appreciates though she does believe that autism is the
correct diagnosis for Benjamin.
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Jen: You know the neurologist we have is good. He still won‘t say
Benjamin is autistic. (Kim: hmm.) He will not say that. He‘s like
―Nope, I‘m not gonna say it.‖ He says ―If they need me to put it on a
report for you to get services then I will put it in any report you
want, but I will not tell you he is.‖ (Kim: Interesting.) ―I will just tell
you ‗He‘s Benjamin‘‖ And he was telling us, his neurologist was
diagnosed with Autism and ADHD.
Kim: The neurologist was? (Jen: um hm) As a child? (Jen: Um hm).
Jen: Which is really, which is why I think he doesn‘t. He‘s like
―Look at where I went.‖ He went to an Ivy League school and he‘s a
top pediatric neurologist, he has a practice here and in [another
location.] (Kim: Wow.) So he has this thing about not labeling kids.
And he‘s quirky himself. He‘s very quirky.
This supports Jen‘s theory that this diagnosis wasn‘t going to be a
limiting factor for her son, that there are more important things about
him than a list of symptoms. It is very important to Jen that people see
Benjamin for who he is, not as a label and in fact she doesn‘t share the
diagnosis with many people, even her family members do not know that
he has been diagnosed. This did not mean that they did not need to get
the formal diagnosis. After a year of early intervention services their
regional center needed to confirm the diagnosis in order to continue to
provide services. Jen was not surprised by the diagnosis but the further
information that the psychologist shared with her did impact her and her
husband emotionally.
Jen: So they sent him to a psychologist who evaluated him and she
determined that Benjamin met the criteria for autism. And her
impression was that he was moderately to severely impacted.
Kim: Hm.
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Jen: So for us as parents, we weren‘t so much worried about the
autism disorder. Like that didn‘t really hurt us. What hurt us
more was the moderate impact. Um it just kind of made us feel
sad for our little guy.
The label of moderate to severe impact seemed to challenge Jen‘s sense
of who this child was and who he was going to be. It was a counterpoint
to the neurologist telling her that ―You know Benjamin might just go to
Harvard or Yale. I mean he‘s doing that well.‖ But Jen chose to stick with
the more positive story. She elaborates:
Jen: His OT is convinced he‘s going to go to college and be this
academic scholar. They‘re actually thinking he may be gifted.
(Kim: um hm.) Because he‘s a sight reader and he‘s doing 50 piece
puzzles. He has the patience for them and he‘s very creative. He
loves to paint. Paint and read and puzzles. If he could do that all
day he would. And he‘s very animated. He‘s the class clown. He
likes to perform for you. He likes to dance and joke.
It is important to Jen to present Benjamin as a child who has gifts. He is
able to charm people, to be the ―class clown‖ and her stories of his
possible futures include the possibility of Harvard or Yale, not a child
who will be ―severely impacted‖ by autism in the future.
Jen also has to struggle against the advice and ideas of other parents
within the autism community, a community that she reports that she
does not feel as if she fits into very well.
Jen: I definitely do feel outcasted from the other moms. I never get
invited for play dates. I never get invited to birthday, well not I,
but we never get invited to birthday parties or play dates. We don‘t
get invited for coffee while their kids are in therapies. There‘s only
one other mom that I‘ve talked to in the two years I‘ve been at
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Clinic C and she‘s like, I don‘t know what her son has but she,
she‘s not someone you‘d normally think I‘d talk to either. She‘s
like from the mid-west and her son is gifted but he has some
pediatric physical therapy issues but she‘s very friendly. She‘s
very accepting. …. we just have these really great conversations
about us as individual women, not about kids. And none of the
other mommies ever talk to me. It‘s only like, I‘d say in the last
week that some have started to acknowledge me. You know, say
―Hi.‖ And I don‘t know what that‘s about. Like I have tattoos and
um I tend to be a little bit of a diva sometimes. Benjamin always
has clothes that are like skulls, you know that kind of thing. So
not your typical. So I don‘t know if it‘s that I don‘t look like them
or that I don‘t act like them because my conversations with people
are not about autism so I think that‘s why I‘m not welcomed.
This feeling of not fitting in or not being welcomed is one that Jen came
back to frequently in the interviews. She attributes it to cultural
differences and the difference in how she‘s chosen to treat Benjamin as
will be discussed later. These limitations haven‘t stopped other parents
from ―bombarding‖ Jen with opinions on what treatments she should be
doing with Benjamin.
Jen: There‘s these moms who are in denial about how impacted
their children are by autism and then there‘s the moms who are
doing these crazy treatments and by then we had been bombarded
from both sides. People were saying ―You know you just need to
pray‖ or ―He‘s just like that and you need to accept it‖ and other
people were like ―He needs to go on a wheat/gluten diet and no
more vaccines and all organic‖ and I‘m thinking ―My kid doesn‘t
eat, period. And you want me to take more food away from him?‖
Jen seemed devoted to treating her son the way that feels right to her.
His individual needs come first and she seeks out professionals that
support this.
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Finding a doctor who listens. For Jen, the key in this is finding
professionals who she feels listen to her. As she says ―I think the
difficult part was finding treatment specialists that were willing to listen.
To not just, not just ask you, but to truly listen.‖ She describes finding a
new pediatrician who supported this picture of how Jen wanted to
mother Benjamin, the pediatrician said:
―You know what, you just have to work with him where he is and
as long as his iron is on track and he‘s gaining weight, don‘t worry
about it.‖ She really said, you know, ―work with what you have.‖
And she put him on some iron supplements and did some blood
work. She suggested we do an allergy screen but we didn‘t want to
because it would be more blood drawn and we just didn‘t want to
put him through more pain.
This pediatrician listened to Jen and finally one of her biggest concerns
was addressed. She had been concerned about how he breathed at night
and how loudly he snored. Their entire family had not been sleeping
because of the sleep disturbances that Benjamin experienced. The
pediatrician listened to these concerns, diagnosed him with asthma and
referred them to an ENT who noted that Benjamin‘s tonsils and adenoids
were so swollen as to be almost completely blocking his airway. He
suggested removing them immediately and Jen felt as if they‘d been given
hope. This became a turning point for Jen and for Benjamin as
addressing the asthma and the swollen tonsils ended up drastically
improving Benjamin and Jen‘s quality of life.
Advocacy work: A 56-page grievance. Unfortunately getting the
tonsils/adenoids removed turned out to be an unexpected fight. When
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Jen‘s teenage son took Benjamin in for what was supposed to be a
routine follow-up appointment before the surgery, he was seen by
another doctor in the same practice. This doctor decided that the
surgeries did not need to be done. This led Jen‘s insurance to deny the
surgery. At this point Jen had to bring out the skills she had developed
as a case manager in her past in order to get the surgery that she was
convinced her son needed. This aspect of mothering is very different
from the careful work Jen has done to see Benjamin as a full person and
to make sure that those around him do too. DeVault (1999) identifies
this advocacy work as part of the emotion work that mothers do ―to
support their children's en-counters with outside institutions-work that
often requires forceful assertion, patience, and tact‖ (p. 56). All of the
mothers in this study engaged in advocacy work of some kind. The
following example may seem extreme but it is only in part because Jen
had significant resources from her previous experiences to make this
advocacy successful.
After the second doctor suggested the surgery might not be
necessary, the family‘s insurance refused to cover the surgery and Jen
ended up going to four different doctors before she could get one that the
insurance would cover to agree to do the surgery.
Jen: All of them [the doctors she sought out for second opinions]
had the same agreement, bilateral tubes, tonsils and adenoids. But
our insurance kept denying everybody and so I had to file a, I do
not lie it was a 56-page-long grievance full of medical records from
all the specialists, all the evaluations, all the consultations. And
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then I finally got the HMO to refer me to…and so I said, ―Give me
somebody completely different‖ and by pure accident I was referred
to a very older ENT, Dr. R. B. and he said ―without a doubt all
three surgeries need to be done, we‘ll send off the paperwork to the
insurance. I‘m a second opinion doctor so they may not approve it;
just know that you may have to do the whole grievance thing
again.‖ And I was like ―I‘m an old pro at this‖ (Kim chuckles) And
luckily the HMO did not kick it back for whatever reason but that
process took like 8 months so he didn‘t have the surgery until
July.
The surgery was a success and after the surgery Jen saw almost
immediate improvements in Benjamin‘s eating and speech. She
attributes part of this to his ―brain waking up.‖ For the first time in his
life Benjamin was sleeping without snoring and gasping for breath.
All of a sudden he just started picking up little words and he
started talking and what we realized is that it wasn‘t that he didn‘t
know how to talk, it was that the tonsils were in the way of him
talking and articulating and because of the fluid in his ears he was
hearing as if he‘d been under water. (Kim: Right) So he was hearing
―lal lal lul lal la.‖ So his speech I would say improved 70% right
after the surgery.
Unfortunately this wasn‘t a miracle cure for all of the symptoms of
Benjamin‘s autism. He continued to have speech delays and though he
was more willing to try some foods as detailed in the next section, his
diet was still very limited and he was extremely rigid about the way food
was presented.
What Benjamin eats. Benjamin‘s eating changed significantly over
the months I interviewed Jen though it remained a significant challenge
for Benjamin and feeding him was something that Jen spent a lot of time
thinking about.
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One of the most challenging things about Benjamin‘s eating for Jen
is that it‘s unpredictable. He would choose a food and concentrate on it
and then stop eating it completely which Jen calls ―extinguishing‖ it.
And so we added Cheerios for a little bit and then one of the things
we realized with Benjamin is that he will eat a food and then it
extinguishes. It no longer is of interest and he no longer wants to
eat it. Goldfish are now completely out, Saltines are completely
out. Lollipops, even though it‘s candy, he‘ll take one or two three
licks, gone. He used to love liquorices, gone. So we‘re back down
again to gummies, like the, the chewy gummies that they sell for
kids. Still on the Carnation Instant Breakfast protein shake.
French fries, once in a while he‘ll eat them but before he‘d eat a lot
and now he eats less. So we‘re still on this very restricted, limited
eating repertoire. He was eating watermelon for a while.
Extinguished. No longer.
Kim: and do you notice a pattern about when he extinguishes
something?
Jen: Yeah, what happens is that if it is something he likes, he just
wants to eat that one food and only that one food all the time and
since he doesn‘t eat we allow him to. (Kim: right) And then after
about 4 months or 3 months it extinguishes. If we try to
reintroduce it, it won‘t happen.
This is from the first interview and though Jen‘s ideas about this will
change, this is a good glimpse at how she felt that she had very little
control over what Benjamin ate. The line ―since he doesn‘t eat, we allow
him to‖ speaks to her desire to let him have as much of whatever he will
eat as he wants. At this point Jen is so desperate to get him to eat
anything that she lets him repeat a pattern that she knows often leads to
him completely stopping eating that food. More about the particularities
of Benjamin‘s eating can be found in the Beyond Picky Eating chapter as
the particularities of his eating present many challenges to his ability to
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participate in daily occupations of family life and childhood participation.
Jen is constantly working on Benjamin‘s eating. It is her ―biggest
concern.‖
Stress and non-compliance: How Carnation Instant Breakfast
coming only in vanilla creates a non-compliant mother. Benjamin is
very specific about the brands he will accept. This specificity to brand
and the qualities of food becomes a particular problem when something
that Jen has relied on to keep Benjamin fed is no longer available.
During our first interview Jen was right in the middle of a crisis like this:
Jen: So one of the problems we‘ve had now is that Carnation is no
longer, we can‘t find the Carnation Instant Breakfast in vanilla
anymore, at any store.
Kim: Yeah.
Jen: But now that our old one is gone we have to find a new one.
And so we were talking about what we were going to do, like what
kind of protein shake because there‘s like so many different kinds.
And we decided because he has eczema and asthma, even though
I‘m not a big fan of the wheat/gluten thing, we‘re going to try the
soy. He‘s actually drank soymilk before, he likes it, so we‘re going
to try using the soy protein based mix for his formulas. But still
it‘s kind of frustrating because there will be days where he doesn‘t
want to eat at all he just wants milk. Milk and water, milk and
water, milk and water. He‘s never drank juice, no chocolate milk.
He doesn‘t like chocolate. So he‘s, it‘s really hard to get him to try
new foods.
Jen struggled with finding something new to replace the Instant
Breakfast shakes. These are particularly important because of the role
Jen believes they play in maintaining Benjamin‘s weight and growth.
Jen: He‘s actually amazing. 97
th
percentile height and 95% weight
so he‘s a good 48 lbs so he doesn‘t look emaciated or
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malnutritioned he has a lot of energy. He looks, he‘s healthy. His
blood platelets are all in line. He‘s ok but he just, we‘re keeping
him alive on protein shakes.
She actually feels that the shakes are ―keeping him alive‖ so to lose them
is a very stressful event made further stressful by the fact that the
professionals working with her and Benjamin don‘t have any answers
about what to do next.
Kim: And when you get, I know you were, looking, right at the last
time we were doing an interview you were going to go to Whole
Foods to try to pick some out.
Jen: We did, we went and it was so overwhelming. They have so
many different selections and it‘s like whey, soy (Kim: Um hm),
this, that, and it was like….and then the concentrations of the
minerals and vitamins that it freaked me out and I thought, you
know what, what if I OD him on something?
His safety is in question both from not having the shakes and from trying
new shakes. Jen questions her own ability to choose a new shake so she
turns to the professionals but there she gets advice that again conflicts
between the pediatrician and her OT/Feeding therapist and even with
her own sense of what this child needs.
Jen: And so when I started talking to my pediatrician, she
recommended completely against it because she wants him to eat
because she wants him to eat and again I think the issue is that
there‘s this huge, there‘s a lot of protein supplements on the
market (Kim: Right.) and there‘s a lot of protein supplements for
different things, for different people. But there aren‘t really any
protein supplements that are geared for children with feeding
issues who do ingest milk and therefore get some minerals but
aren‘t getting proteins and other kinds of things.
To Jen having the shakes will not exclude Ben from eating. Her goal also
is for this child to eat but she is not ready to go with the doctor‘s
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suggestion, to go to a plan where he is not getting what she considers his
primary source of nutrition. She seeks information from another
professional, the dietician who works with their OT but she doesn‘t get
back to Jen in a timely manner causing Jen to suspect that none of
these professionals have a good answer for it. So Jen resorts to trying
things on her own, to ―winging it.‖
Jen: So the issue that I realized was nobody really knows what to
recommend and then the amounts of what is safe to recommend
from the nutritionist vs. the pediatric standpoint. And so um I‘m
waiting to hear from the nutritionist this week. If I don‘t hear from
her, I‘m going to call Benjamin‘s pediatrician again and say ―Look,
he‘s not getting anything.‖ Now we‘ve tried the Ensure and I‘ve
boughten it but they don‘t have it in granules or powder, it‘s like
premade. So it‘s like more for you know g-tube babies and stuff
like that and Benjamin does not like the heavy vanilla flavor of it.
[It‘s too heavy.
Kim: [it‘s too much?
Jen: He doesn‘t like the heavy, it‘s just too thick. And so we don‘t
know. Right now he‘s actually a full 48 lbs which is healthy.
Kim: um hm.
Jen: I think he might be a little anemic. So we give him an iron
supplement. But he still needs something. I think Kathleen [the
feeding therapist] is trying to figure out. I mean obviously the goal
is to get him to eat but in the interim, the issue is what to do to get
him a system in the interim of him actually eating and then eating
enough foods that it makes a difference. .... So nobody has that
answer now. (Kim: Um hm.) OT doesn‘t have that answer, the
nutritionist doesn‘t have that answer, the pediatric, the
pediatrician doesn‘t have that answer so we‘re just kind of like
winging it.
Jen is aware that his weight is fine but she is still concerned that he is
―not getting anything‖ which is an interesting phrase to choose since
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Benjamin is still drinking a large volume of milk and eating chips and
some candies.
This story feels very familiar to me as a clinician who works in
feeding and I find myself hypothesizing that the professionals Jen is
working with may think that this child is getting adequate calories from
the milk and foods he is taking as evidenced by him maintaining a
healthy weight. They are not worried about his nutritional intake and
therefore, they are not responding in the way Jen seems to expect, not
sharing her concern and not really connecting with her on this point.
Jen is just not comfortable with leaving Benjamin‘s intake at this level
without the shakes. As a mother she is concerned with protecting him
from not getting adequate nourishment so she finds herself having to
―wing it,‖ to explore her own solutions for making sure that he stays
nourished through supplements and a continued pursuit of a
professional who will provide her with some answers.
Creating new occupations: Improvisations in mealtime. By the
final interview Jen is able to challenge Benjamin to try some new foods at
home, a new occupation for both of them. She has created a mealtime
routine that supports trying new foods and the family dynamics around
eating and working with Benjamin have changed. Jen has orchestrated a
whole new way for her family to interact at dinnertime in order to
support Benjamin‘s new skills.
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Jen: Uh, I think it‘s just, I‘m grateful that um, my husband is
finally on board. …. I know that other people know what a big
piece it is when your partner‘s not on board. And you‘re trying to
do these things, it makes it, it was ten, ten-fold more difficult.
Kim: So in the past, before he was, before Hank was on board
with this, was he, were you--, like if you had brought home the
McNuggets, would he just have said ―Oh let him, let him go?‖
Jen: Yeah.
Kim: Let him watch the movie?
Jen: Yeah, he would just said, ―Just let him, if he doesn‘t want to
eat it, [unintelligible] eat it.
The difference now is that everyone is on board with modifying the
environment to support Benjamin eating. Jen has instituted rules at the
table that everyone must eat the same foods and that there will be no
making faces or saying negative things about the food. This was a
particular challenge because Jen‘s husband is a very picky eater. She
used to make separate foods for him but now makes one meal for the
entire family. Here she describes her strategies:
Jen: And my husband‘s like, doesn‘t like chewy textures, doesn‘t
like porridge like textures. Um, which I‘m surprised because he
eats yogurt. And I tell him I don‘t, that makes no sense. You can‘t
have yogurt and not like um, he doesn‘t like soups. Just, and
some, so I tell him, in front of Benjamin, he has to get over his
eating otherwise, because he‘ll say it ―Like daddy, like daddy.‖ And
so what I do now, actually on purpose, is I make foods that are
challenging and we‘re going to feed Ben and I present them to my
husband and he has to eat them because Ben is there. [Laughs]
And he‘s like ―I really don‘t like my rice like this.‖ I said, ―I know
but we‘re eating in front of Benjamin, so don‘t you really like it?‖
And now he‘s, he‘s eating, but it really is like, even with my
husband, I, I‘ve totally chained some foods, I‘ve done a lot of the
similar--, eggs, if they‘re not bright and yellow, and whisked and
fluffy, he wouldn‘t eat them. I swear to you God and he, nothing,
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nothing can touch his food. He has to have the food, so now with
the kids I‘m purposefully making foods that are mixed in, like and
mashed so touching. And so they have no choice but to like figure
it out.
The routine to work on new foods with Benjamin has become part of
their social mealtime routines and Jen relates this to the importance of
Benjamin being able to eat in future social situations. Jen requires that
everyone, even her 75-year-old father participate in this.
Jen: Um, and then to seek, I think [Hank] saw what a challenge it
is for Benjamin and we said you know, eating is social. And if you
can‘t eat in a social setting, we‘re impacting him. And so, what do
we really need to do? How do we get over this? And so, everybody
eats like um, you know get the six piece nugget and everybody gets
a nugget. And we all have to do the same thing and it‘s so funny to
see a 75 year old man, he‘s like ―Why do I have to touch it?‖ I said
―Just, you got to touch it. Everybody touch it, show me.‖ And then
they get a sticker. ―Okay, everybody smell it. Okay, everybody gets
a sticker, I‘ve got stickers. Alright, now we take a tiny little bite‖
and of course Zachary [older son] swallows like, because he loves
it. My dad‘s like [makes gulping sound], I‘m like ―No, just a bite.
[Laughs] Okay, you don‘t get a sticker.‖ And then, you know, but
everybody has to get, because we want him to see the similarity.
Jen describes one specific incident of this new family routine which
resulted in Benjamin trying a new food, a chicken McNugget for the first
time just a few nights before one of our interviews. The interesting way
she has of directing the scene to maximize Benjamin‘s success is
highlighted by this incident.
Jen: So, um, I rented um, the movie Marley and Me ‗cause he loves
Marley and Me and I said look, I‘ll, he goes I‘ll go to Hollywood
Video right now, but you‘re going to have to eat something. Um,
―okay?‖ ―okay, okay.‖ We went to Hollywood Video, rented, went to
McDonalds, and you think you‘re feeding the kid broccoli or
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something [laughs] I mean, it‘s a McNugget for Christ sake. So we
get home and I get, I tell the whole family ―Okay everybody needs
to come to the dinner table,‖ you know you got everybody like a
dollar menu burger or something. I said we‘re all going to eat
together, but we have to tell Ben that we will not put Marley and
Me in till he bites a chicken McNugget and swallows it. And
Benjamin‘s like, you know he saw the fries, he‘s like ―I can do
that.‖ and then he looks at the chicken and he‘s like ―That‘s not
mine, that‘s yours, it‘s yucky.‖ I‘m like ―No it‘s really good, you‘re
going to have some today.‖ It‘s like, he‘s like ―um, I don‘t want
any.‖ I said ―Well then you can‘t have Marley and Me.‖
And he just lost it like oh my God, bloody murder and I said ―Just
come on, Dude, you can do it. We know you can do it.‖ And I wish I
would have videotaped it. His facial expressions were to die for. It
was like you were feeding him dog food or something, he‘s like
―bleh‖ and so my husband gives him the McNugget and Benjamin
like take, like licks it and he‘s like I‘m done and then we‘re like
―No, no, no, no, you have to bite it.‖ So he bites it and then he gags
and he goes ―huh [gagging noise]‖ and we‘re like ―No, no, no, no.
There‘s 4 more nuggets to go, we‘re not quitting.‖ Normally I think
in the past, we would have been like ―Okay he‘s gagging, we‘re
done.‖ And this time we‘re like ―No, no, no, no if you want Marley,
I‘ll hit play but you have to bite it.‖ And so this time he bites it and
cheeks it and then he gags it. We‘re like ―Almost, you‘ve got to bite
it and swallow.‖ ―I can‘t do it, I can‘t do it!‖ And he was just yelling
and my dad was laughing and he [Benjamin] was like ―Hu-uh!
[sound to represent throwing up], you know he‘s, i— because he‘s
so dramatic and this time we pretend to throw up sometimes so he
had all the, the, the--. [And my husband‘s like—
Kim: [The sounds?
Jen: Yeah and [Benjamin‘s] like ―Hu-uh!‖ and [Hank] was like
―You didn‘t even have anything in your mouth,‖ I‘m like ―Dude,
your mouth‘s empty,‖ He‘s like ―Oh.‖ [laughs]. I‘m like
―[unintelligible], Ben,‖ and he‘s like ―okay, okay‖ and he bites it
and finally he swallows it. And then he‘s like ―Water, water!‖ And
I‘m like you know we picked the nugget ‗cause it was crispy and it
was protein, I mean you had like a similar chaining tex--, um, it
was chaining it to the fries and chips. ‗Cause it was so crunchy.
And so I‘m like ―I know you like crunchy and I know they‘re salty
enough for you. I know that you like it, it‘s just you just don‘t want
to eat it and you know what—.‖ So once he finally did that, then
we‘re like ―Okay whoo, he did it!‖ and you know he cried for all of
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about 4 minutes, real tears though, just like you were torturing the
kid. I‘m like ―You know, I have come to this conclusion that there
are no kids who need OT‘s in Uganda, okay? It is an American
thing and, and even in Mexico, so you are going to eat, my friend,
you are Mexican.‖ And um, it was a little bit of tough love, but you
know we gave him his fries after and we gave him the Happy Meal
toy that came with it which was Monsters and Aliens, which is a
huge reward and then we watched Marley and Me. And we did a lot
of positive reinforcement, I‘m like ―God, that was a really great job
and I know it was,‖ you know again the Floortime kicks in, I was
like ―I know it was really tough to eat a new food and I know it was
not the same, it was different, but it‘s okay, you know?‖ And, you
know by the end of the night he was fine.
Jen was able to walk Benjamin through this challenging incident. She‘s
able to tell him that ―it‘s different but it‘s okay‖ partly because she
believes it now. She sees that he will be able to make it through this, he
will be ―fine‖ at the end of the night and her confidence is rewarded
because the next day when she gives him the choice to do it again,
Benjamin actually chooses after a little bit of encouragement to try again
and he‘s even more successful than the night before and admits that it
―was not bad.‖ She continues to worry about Ben being traumatized, but
she is confident enough in her ability to soothe him and his own
readiness for this that she can push. This is a big change for Jen. In the
past she was unable to push Benjamin to try new foods. She was so
concerned with him not eating that she would let him eat whatever
preferred food he would take. Though she doesn‘t say so directly, I think
this has to do with Jen‘s sense that Benjamin is ready to make these
changes. This occurs after her first big victory related to food at home,
switching from the bottle to cup for his milk which will be detailed in the
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next section, a move that was very much predicated by Jen‘s belief that
Benjamin was ready to be challenged a little bit more. Jen has been able
to go from worry over him no longer having the protein shakes to a place
where it‘s OK if he‘s hungry and eats, and OK if he‘s not hungry and
doesn‘t eat.
Many of the changes to this family‘s feeding routines and the
changes to how Jen has been able to approach Benjamin‘s feeding have
come through a confidence in knowing he‘s ready, a sense of his internal
states and an awareness of the relationships in his life and how they
impact his feeding. Much of this awareness seems to be related to the
specific philosophy of intervention that Jen has chosen for Benjamin,
Floortime.
Floortime/DIR as key to understanding Jen’s mothering. One
key to understanding Jen as a mother, is to understand how much she
has invested in the methodology of Floortime ™ for helping Benjamin and
her family. Jen credits much of Benjamin‘s success to their involvement
with Floortime ™, saying it is ―the best‖ and ―helped everything‖ in their
lives. She even feels that other interventions such as OT to address
feeding issues and Speech therapy would not have worked as well if they
had not incorporated Floortime techniques.
I think that the Floortime, not just the Floortime, but the Floortime
in the way that it included OT, was really crucial to helping us get
to where we need to be today. Like, had it just been OT, up until
like right now? Benjamin would probably still be on the bottle.
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Floortime is part of the larger system of intervention developed primarily
by Dr. Stanley Greenspan to treat children with autism and other special
needs. This methodology is often set up in direct contrast to more
behaviorally based methods and emphasizes the social emotional aspects
of development and the importance of relationships.
The Developmental, Individual Difference, Relationship-based
(DIR®/Floortime ™) Model is a framework that helps clinicians,
parents and educators conduct a comprehensive assessment and
develop an intervention program tailored to the unique challenges
and strengths of children with Autism Spectrum Disorders (ASD)
and other developmental challenges. The objectives of the
DIR®/Floortime ™ Model are to build healthy foundations for
social, emotional, and intellectual capacities rather than focusing
on skills and isolated behaviors.(The Interdisciplinary Council on
Developmental & Learning Disorders, 2009)
The actual intervention is done by the parents with guidance from
professionals (usually a psychologist or paraprofessional) specifically
trained in the Floortime method. Jen reveres her Floortime therapist
Isabel.
I mean Isabel is the ideal. I mean if Greenspan could see Isabel,
he‘d love her, he‘d hire her for himself. She‘s that amazing of a
Floortime therapist.
She has relied on her to help with all of the challenging issues in
Benjamin‘s life including the unusual ―Floortimeing‖ of her husband,
Hank. Jen credits Isabel with helping her teach Benjamin‘s father to
play and getting him more involved in helping around the house when
Jen was feeling overwhelmed. Isabel‘s ability to interact with the other
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team members such as Kathleen, Jen‘s favorite OT, is also something
Jen credits with helping Benjamin to be successful.
I think that‘s where there was this beautiful mix between Isabel
and Kathleen. You know that Isabel went to go watch him at OT,
and Kathleen from OT came to watch him in Floortime, because
they wanted to see what techniques were working for each other,
and what was working at one center, why was it not working at the
center, what they could cross over, but also how they could
support each other‘s goals. Um, so OT was really about making,
you know the feeding, but they were in, they really started taking a
Floortime approach to feeding, which I personally think is amazing.
I think every OT should take Floortime.
Understanding Floortime ™/DIR is important in understanding Jen‘s
story because she seems to have internalized many of the messages from
this method. It is perhaps impossible to know how much of this was
because of how closely the Floortime model intersected with Jen‘s own
ideals about mothering. I am unsure which came first, yet Jen herself
frames many of these things as being part of Floortime. She even
identifies herself as a ―Floortime parent‖ when defending the way she
talks to Benjamin to her husband.
He was jumping up and down and I remember saying something to
it, like, ―Um, Benjamin, we need to be safe with our bodies, okay,
what we [unintelligible]? We need to be safe.‖ and my husband‘s
like ―Okay, you need to stop,‖ Like [laughs] ―what did I do?‖ He‘s
like ―Parents don‘t talk to their kids like that!‖ I‘m like ―Floortime
parents do!‖ [laughs] and he, I go ―What do you want me to say?‖
He‘s like ―Normal: Alright Benjamin, knock it off!‖ Uh, I said ―You
know dude, I can--, we can‘t help it, I mean we‘ve been in like
these services for 2 and a half years!‖ I can‘t help but say, ―We
need to be safe with our bodies‖ and you know, ―gentle when we
talk.‖
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I noted that she spoke frequently about Benjamin‘s emotional readiness
for new skills and the importance of the relationships in his life in
helping him to progress along his developmental trajectory. The
Interdisciplinary Council on Developmental & Learning Disorders
definition of Floortime as ―a specific technique to both follow the child‘s
natural emotional interests (lead) and at the same time challenge the
child towards greater and greater mastery of the social, emotional and
intellectual capacities‖ (2009) resonates closely with the way Jen
concentrates on interacting with her son and even in the way she values
the relationships with the service providers who she interacts with each
week. Part of the way she mothers is by letting Benjamin lead.
Jen: You know Benjamin dresses up. He likes drama play. …. So I
buy him tons of costumes so we go shopping in costumes and we
go to therapy in costumes and I think people don‘t necessarily
accept my unorthodox approach to letting him be him.
Kim: Yeah.
Jen: It‘s kind of like Rain Man, you know how they let him be him.
It‘s kind of like that. I just really, I let him lead, I really do because
I think he‘s going to have this amazing personality when he grows
up. He‘s going to be this amazing young man.
Jen is convinced that the best way to help Benjamin grow up to be ―this
amazing young man‖ is by ―letting him be him‖ yet this in no way means
that she doesn‘t challenge him, in fact she is tremendously invested in
intervention. She just carefully chooses when to push.
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Her trust in letting Benjamin lead is evident in the story Jen tells
about transitioning Benjamin from drinking his nutrition shakes (―milk‖)
in a baby bottle to drinking it from a cup, something that had
successfully happened for the first time at home the night before our
fourth and final interview.
Benjamin first started drinking his milk from a cup at the therapy
clinic several months before, but refused to do so at home. The
therapists, who as detailed above Jen very much respects, were
suggesting that Jen needed to push Benjamin to do this transition at
home also and Jen had initially tried without success. Several months
went by with the therapists pushing and Jen resisting trying because she
was waiting until she felt that both Benjamin and the rest of her family
were ready to make this push. The story is long, but it is very illustrative
of the work that Jen has done to prepare Benjamin for the transition and
to observe him carefully so she would know when he was ready.
Jen: And then um about a week and a half ago I noticed he um
because what happened with the Advent [the only brand of baby
bottle that Benjamin would drink his shakes from] is that he would
bite on the nipples, remember I mentioned that?
Kim: um hm.
Jen: And he was a little frustrated that the holes were too big.
Cause he didn‘t get that same kind of comfort anymore. Well
they‘ve gotten so big that you could put a straw through it.
Kim: Hm.
Jen: SO it was more him drinking it like it was shots.
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Kim: Yeah.
Jen: and he‘d get milk all over himself. And I just was not buying
him nipples, not fixing it and so um this last week the holes were
ridiculously big. It was just like, he could put his whole finger
though. And he was like, ―Look, my bottle.‖ And I was like ―Well,
maybe it‘s time for you to drink from a cup.‖ ―No I‘m a baby.‖ And
I‘m like ―OK then well you‘re just going to have to drink from a
broken bottle.‖ And um so he‘d been, he‘d been drinking less milk
because it was broken.
This interaction is key as prior to this point Jen had not been able to
hold out when Benjamin had decreased his intake of his milk because
she depended on it for meeting most of his nutritional needs and she
didn‘t feel he was emotionally ready to let go of the bottle. As she had
previously explained, there were times when she felt that he would stop
eating completely if she did not provide him with the right bottle. In a
story about not being able to find the type of bottle Benjamin preferred at
the time she said
And there‘s no way you can explain to someone, ―No you really
don‘t get it. If he doesn‘t like it he will not eat. So I have to buy the
right one.‖
The difference at this point is that Jen feels confident that Benjamin is
ready to handle her saying no to fixing the bottle. She is confident that
now, the ―natural consequence‖ of not having the bottle will be that he
will eat other foods, not stop eating entirely.
Jen: But one of the natural consequences to that [not drinking
from the bottle] was that he was eating more. Because he was
hungry because drinking that milk wasn‘t that comfort anymore
and he couldn‘t just like lay in the sofa and drink it.
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Kim: Yeah.
Jen: And so, he‘s gone through two boxes of cereal. He‘s eating
Jell-O again which he satiated off.
Kim: Mmm. Um hm.
Jen: He‘s eating different kinds of assorted gummies. He‘s gone
back to eating fries which he had completely satiated off.
Kim: mmm. Um hm.
Jen: And I don‘t know that he was satiated now that in retrospect,
looking at his feeding pattern, I think that it was that he was just
lazy.
Kim: Hm.
Jen: It was a lot easier to drink a power, a shake than to eat the
food. And I know that‘s what Kathleen had said, had been talking
about. And he‘s back to eating goldfish and even non-traditional
Goldfish. Like wheat Goldfish, rainbow colored Goldfish, just
things that he normally wouldn‘t, he‘s back to eating. And lots of
water.
Jen is re-framing her previous understanding of Benjamin ―satiating‖ off
of foods which she calls ―extinguishing‖ earlier in the chapter, a troubling
occurrence that she associated with his symptoms of autism into one
that supports her being able to push Benjamin now. Pushing a child
who is lazy is very different from pushing a child whose diagnosis is
impacting his ability not to eat these foods. She goes on to explain that
she attributes these changes at least in part to language changes that
Benjamin has experienced in the last few months that are allowing him
to better understand his own bodily experience, changes she has closely
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attended to as she tries to figure out who this child is and what his
experience of the world is.
Kim: And did you figure out that he was willing to try these
because he asked for him?
Jen: He asked for them. Because I just was not going to fix the
[bottle] and he, in the last couple of months with his language
improving as much as it did. And I think it was a combination of
his language improving and understanding what his language
connected to his body
Kim: Um hm.
Jen: because he, because one day he said ―I‘m hungry.‖ And
Benjamin has never said that before. This is the first time
since….ever. He said ―I‘m hungry.‖ And I said ―Does your tummy
hurt?‖ And I pointed to the pit of his stomach. And he said ―Yes, it
hurts. I‘m hungry.‖ And so when we ate food I said ―Is it still
hungry?‖ ―Little bit.‖ Or ―Not so much,‖ or ―No more thank you.‖
Kim: um hm.
Jen: And so he understood that by eating he wouldn‘t have that
feeling in his stomach.
Kim: Great.
Jen: Um because that was what the critical point was I think for
OT and for Floortime and for Speech was you have to connect the
language to a state of mind, a feeling, a state of being. And that‘s
why always I wasn‘t being so tough on the food, it was because he
still hadn‘t connected the language to the food. And again, it was,
the eating was still on my prompt and not on his prompt. (Kim; um
hm) And so this year was really about, it has to be on his prompt.
This is an extraordinary example of Jen‘s belief in the Floortime principle
of following the child‘s lead. She trusted that for this to be successful, it
had to ―be on his prompt.‖ She had to let him have the agency and she
trusts that now that he is able to identify how his body is feeling he will
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be ready to claim that agency and move forward in a positive way. After
a brief aside about his language she came back to the story of the bottle.
Again she shares her interpretations of what his experience is like, what
has been stopping him from eating and why he is now ready to move
forward.
Jen: Um and so those last two weeks he was just not really that
interested in the bottle. Not really drinking from the bottle. More
water. Wouldn‘t drink milk from the cup but was eating a lot of
solid foods (Kim: um hm) or more solid foods.
Kim: Right.
Jen: And so we went to get some more solid foods this weekend we
made a cake together, just trying to get him sensory wise. I really,
sensory, he has no sensory issues to food. These are personal
apprehensions that he has about food. (Kim: hm.) Period. There
are no oral motor, there are no, there are no like um in his mouth
he can‘t chew or swallow. It‘s nothing like that, just, in his mouth
he has apprehensions about food that started early on because of
the original medical issues.
Kim: Mm. Um hm.
Jen: And then they just developed general apprehensions from not
trying different things. And so like this weekend I was like, you
know, you‘re a big boy now and there‘s going to be no more Advent.
And it was, it, it, it was like he really stopped drinking the bottle on
his own. I realized this last week he was just not really drinking it.
Jen is now ready to push. She is ready to take the bottle away, a project
that she‘s been debating about for months. In the second interview I‘d
done with Jen, two months before this one Jen had talked about a plan
for giving the bottles away over Christmas break, giving them to Santa
Claus. A plan that seemed to be motivated by the pushing of the
therapists, not by her sense that Benjamin was ready.
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Jen: Like even with Kathleen at Clinic C. She‘s like ―You know
Jen, he‘s ready to get off the bottle. He can clearly drink out of the
cup. You‘re just going to have to do tough love and you‘re just
going to have to get rid of them.‖ And so the idea we came up with
is that we‘re going to give them to Santa Claus. Because Santa
needs them for all the new babies in the world (Kim: Um hm) and
so he doesn‘t need them anymore because he‘s a big boy.
Kim: [Um hm. Um hm.
Benjamin: [Mom, mom, mom, mom, mom, mom, mom, mom.
Jen: [and so we‘re going to do a picture, like a PAC, like a picture
story book about Santa getting bottles and we‘re going to gift wrap
them and then we‘re going to say goodbye. And hopefully he‘ll do
OK.
Jen‘s final phrase here speaks volumes. She doesn‘t trust that Benjamin
is ready and unsurprisingly, she never followed through with that plan.
For Jen, this had to be about readiness and at that point she didn‘t trust
that Benjamin was ready or that she was ready herself. This isn‘t to say
that Jen didn‘t have any apprehension in the successful story. In fact
she expressed her worries to me and it was her worries that pushed her
to try presenting the cup at home again.
Jen: And then on Friday and Saturday he just wasn‘t, he was
drinking more water and he wasn‘t getting any milk so I got
worried.
Kim: mm hm.
Jen: So I said ok, I said you know what, so yesterday we played a
lot, ate a lot. And then I got, I presented the milk in a cup. And he
was like ―ahhhh I don‘t want it.‖ I‘m like ―You can do it. You‘re like
Bob the Builder.‖ And he‘s like ―You‘re right. I can do it.‖ And he
was like chugging it! Which we don‘t really care if he chugs it or
drinks it.
Kim: um hm.
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Jen: He‘d take three sips and turn around and then do a thumbs
up. And like ―You did it! You‘ve got a little bit more!‖ And he‘d go
back and…and he drank 12 oz.!
Kim: Great! That must have been exciting.
Jen: Oh it was. My husband was like (Pause while she makes
dropped mouth surprise face). We were like ―Oh my God!‖ And
then he went and brushed his teeth, read three books and went to
bed. And then this morning he didn‘t really want to drink any milk
out of the cup but I made him drink at least two, two mouthfuls
before he went to school.
Kim: Um hm.
Jen: So the cup, the bottles are everywhere and they‘re just, they‘re
done. I mean we have them. They‘re still in the sink, needing to
be washed. In the sink.
Kim: Yeah
Jen: But I don‘t, he just doesn‘t need it any more. And so, we
were really proud that he was just…and I, I wanted to do it. I saw
how silly it looked. I knew that there was that part of me who
wanted to keep him as a kid but there was also this part that I
really wanted it to be about him being at a place that he was ready
to let it go.
Benjamin being ready was the key for Jen. Her attention to his ability to
know and express his internal state of hunger and her conviction that
they had addressed or ruled out the physical causes for him not eating
(sensory dysfunction and his swollen tonsils) allowed her to go to a place
where she could push him. She wasn‘t waiting for him to do it himself,
but she was waiting for him to be ready.
Jen: Because, I just don‘t. I think there are some things I should
push with the kids. He gets pushed a lot with therapy. Like he
has an insane therapy schedule and there has to be… I just
wanted to leave something be about that. But he left it. He was
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ready to leave it. He showed me that he was ready to go to the
next level and it was really about me just willing to like give him
praise for going to the next level and taking it away completely
which we did.
Jen still had some ambivalence about her own role in this story. As she
reflects back on the new changes in her life and her newfound ability to
push her son more effectively into trying new things she realizes that her
initial reluctance to push Benjamin might have been seen as, or even
actually been, babying him but she feels that in some ways they have
benefitted from that babying.
Jen: I think I think when we found out he had autism, I disabled
him a little bit more by babying him so much and I know I did a lot
of it and I'm glad I did. But you know what? I don't regret it. I'm
glad I did it. We have a really great bond. I have the most loving
affectionate child ever who just loves to be swaddled and cuddled
and I think that's good.
Kim: Mm-hmm.
Jen: I don't regret it. I don't regret that it took me this long to get
him [off the bottle.] Even though everybody gave me a hard time, I
knew that I wanted it to be when he was ready to let it go. And I
knew that my way was going to be letting him bite the nipple until
it was annoying and a thorn in his side and he'd get rid of it. It's
like with the kids. When the kids didn't want to wear clean clothes
and everybody would be like ―Oh my god, they stink. They stink.‖ If
they want to go to school like that, let them. One day Zachary
came home and he said the kids made fun of me. They said I
smelled. I said maybe you should take a shower and change your
clothes and ever since then, every single day he usually takes a
shower. He's anal retentive about him. Body conscious.
Kim: Mm-hmm.
Jen: But I realize the same thing with my husband. [Unintelligible
word], you just have to be, you have to let them, I had to let them
figure it out.
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Kim: Mm-hmm. Almost you had to let them fail.
Jen: Yeah. And you know, I believe in failure because I think if
people don't fail, they don't really succeed because you don't learn
anything from failing. If something works all the time, what do you
get? Nothing new. But yet if nothing works then there's always
something new. That's how we are with Benjamin. It‘s like if we
spill something, it's okay because we get to try something different.
We get to try something new.
Kim: Yeah.
Jen: Um, I'm not caught up and-and I, I failed a lot. A lot in
parenting like what I do if we had another child, would it be
different? Absolutely, because I learned from what happened with
Benjamin, but there are some things that I wouldn't change.
Kim: Yeah.
Jen: There are some things I wouldn't change.
Jen has worked hard to develop and fight for her ideas about mothering
this child. She has spent countless hours in Floortime therapy learning
how to engage him and how to access the social/relational side of his
personality and she feels it has paid off. She doesn‘t deny that there are
things she would have done differently, but she has embraced those
failures and used them to move forward. Jen and Benjamin have a
relationship built on doing things together and one of those things has
become eating together. Benjamin is able to do things with his mother‘s
support that he would not be able to alone. He is able to advance his
eating skills to new levels with her support and the support of the entire
family behind him. His mealtimes have changed from drinking his bottle
alone on the couch to joining his family at the table to participate in a
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meaningful social experience. Though he continues to struggle with
eating, he is able to fully participate in the mealtime occupation that his
family has created.
Sofia’s Story: Getting Inside
Sofia was referred to the study through a local occupational
therapist named Gretchen. Gretchen had only been working with Sofia
and her son Roberto for a short time but felt that they would be a good
match for the study. Sofia shared that she is currently not working
though she used to work as a translator for the school district. I met
Sofia at a mall near her son‘s school for the first interview. The school
was quite a distance from their home and Sofia needed to stay near the
school during the day because she would go and get lunch from a local
restaurant each day for Roberto. She was currently bringing Pizza Hut
pizza each day and had previously brought French fries as they were the
only food that Roberto would eat away from home and he would only eat
them if they were fresh. During the school day Sofia would shop at local
stores, sit and read at the local library or take her laundry to a nearby
laundry-mat while she waited to bring Roberto‘s lunch.
Kim: So, you stay by his school and you drive his lunch over?
Sofia: Yes. It has to be fresh, it has to be crisp, or he will not eat it.
Kim: And so, he's just eating French fries for lunch?
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Sofia: No, no. Now, he got sick of fries. He was saying yuck, and he
grabbed the fries and spit at them. When they would put them in
front. Or, I said, ―If you don't want it, throw it.‖ So, he'd get the
little bag, throw it in the trash, and move on. I'm like, ―What do I
do?‖ And that was the breakthrough, when that grilled cheese and
the turkey. I said, I'm just going to take pizza. I'm going to take
pizza. And he won't eat it cold. I have to go and get it. He won't eat
it that's what we're doing now, trying to see how he'll eat it from
the microwave.
Kim: So, right now, you're bringing fresh pizza every day.
Sofia: The little individuals. So, he'll eat two slices, thank God he'll
eat two slices. I'm sure he'll eat today because he didn't eat any
breakfast. I took some popcorn today. He was eating popcorn, he
didn't want popcorn anymore. So, it's been a battle. I'm still, we're
still trying to figure out how to break through that, something else,
you know.
Sofia‘s entire day is shaped by her son‘s feeding challenges. Her
mothering work extends even into the time when Roberto is at school. It
has an intense impact on her ability to participate in other occupations
during her days. Occupations involving mothering her other children or
pursuing her own choices of activities. Roberto‘s movement away from
the reliable French fries was very difficult. This battle to find some other
food that he will eat, some food that won‘t require Sofia to deliver it hot to
him at lunch time is very difficult.
Unfortunately Sofia elected not to continue to participate in the
interview process after the first interview. She cancelled the second
interview twice and then when I called to reschedule the second time she
admitted that she didn‘t feel comfortable doing another interview. She
mentioned that the first interview had ―unearthed a lot of emotional
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memories‖ and she was ―just not ready‖ to think about this. She noted
that her story has a lot of ―pain and sorrow‖ in it and she thinks it‘s
better to not think too much about it right now. She had been talking to
a friend who also has a child with autism and asking her about when she
had gone to therapy. Her friend said it had been years after her child
was diagnosed. Sofia emphasized that it has only been a few years since
her son was diagnosed and that she doesn‘t feel ready to deal with the
pain involved. I apologized for causing her any distress and she shared
that it wasn‘t that at all, but that she just wasn‘t ready to go forward and
had to ―pull back‖ from the rest of the study. She revealed that she had
another child who had died right around the time that her son was
diagnosed which was information that I did not know prior to this phone
call. Talking about that time had brought up painful memories that she
was not interested in exploring further. I asked her if there was anything
I could do and she reassured me that she was fine, she just didn‘t want
to continue.
The interview that we were able to complete told me a good deal
about the journey that Sofia and her family have been on related to
Roberto‘s struggles with eating. Two main stories from this interview
reveal quite a bit about Sofia and her family. When I asked Sofia to
describe mealtime for her family she focused in on the challenges that
Roberto has faced around eating.
Kim: So what is mealtime like for your family?
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Sofia: Oh my. Mealtime is sort of under control, not 100%. I try to
keep it healthy for us. My son is always sort of…we have to cater
him with special meals. As you see I work with Gretchen now.
Kim: Um hm.
Sofia: My son has only a total of 7, maybe 8 things that he eats.
And so we eat at the table it‘s one menu here and another menu
going on right there.
Kim: So one menu like for you and then….
Sofia: For my son and one menu for us. It‘s not easy. It‘s
something that we‘re now accustomed to because before we
wouldn‘t sit together because just the smell would make him vomit
so that was a very difficult thing.
In this passage, we learn that Roberto has a very limited diet with only 7
or 8 foods and that Sofia has been cooking those things as a separate
dinner for him almost every night. One of the major challenges for
Roberto is an olfactory sensitivity that leads him to vomit whenever he
smells food, similar to what happens for Lawrence, Rachel‘s son. As
detailed in Chapter 5, Sofia believes that their work with Gretchen, the
OT who has been working with the family on feeding challenges for about
a month before this interview, has made an enormous difference in their
family life. Roberto is now able to tolerate sitting at the table while
others eat and Sofia is no longer feeding him directly. This has been
going well though they did have one set-back the previous weekend.
Making progress slowly: The smelly taco story. This story
occurred the weekend before the interview and highlights how Sofia and
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her family (with the help of Gretchen) are working on incorporating
Roberto into family mealtime which he has not been part of up until this
time. Sofia‘s husband had brought home tacos for the family and this
proved to be too significant of a challenge for Roberto. Though Sofia had
prepared him his usual milder dinner, the presence of the ―smelly tacos‖
as Sofia labeled them, sent Roberto running for the bathroom to vomit.
The remarkable thing in this story is that Sofia was able to let Roberto
run for the bathroom and stay calm herself. She reflects in the interview
that she tends to worry and relates several situations that promote her
feeling anxious throughout the interview. She even goes so far as to say
that times when Roberto is uncomfortable scare her. Her new strategy
though of not making a big deal over the vomiting leads Roberto to be
able to come back to the table to finish his grilled cheese/quesadilla.
Sofia: So, [my husband] just put [the tacos] on the table. And
[Roberto] looked. And he started coughing. And I'm like, ―Okay,
let's not look at him.‖ That's another thing that has-- we need to
not be so, ―Oh my God! What is wrong?‖ So, we're like, ―Okay,
we're okay‖, and he was fine. And all of sudden, he went and
vomited. He came back, and he ate his grilled cheese. I'm like,
okay, so, he didn't like that, he didn't appreciate it. He threw it out.
He came back, finished that half of the third part of the grilled
cheese, I mean, the quesadilla, and went on his merry way.
This ability to come back to the table is new and I‘d suggest that it is
partly related to the work that Sofia is doing herself not to create a big
reaction every time Roberto vomits. She states that she still gets scared
by his vomiting but she is able to act calm and not make a fuss about it,
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to not look at him and to gently reassure him instead of panicking and
asking what was wrong. This calmness allows him to return to family
mealtime even though the ―smelly tacos‖ are still on the table. This
ability to participate in family mealtime is very important. It brings
Roberto into the family‘s social time. When he was unable to sit at the
dinner table with them he was missing out on an important family
occupation, one where potentially he would be exposed to family
conversations and important learning opportunities (Ochs, et al., 1989).
The second important story that Sofia told was of finding the
correct school placement for her son. Sofia had done office work and
interpreted for special education in the past so she was familiar with the
system but the experience of having to navigate the system herself was
difficult. During the time we spent together I noted that Sofia seems to
be very emotionally sensitive. For example, she has stopped reading
anything about autism because it bothered her too much.
Sofia: I don't do that much reading, that much, anymore, because
it just doesn't let me sleep.
Kim: When you read about the --
Sofia: Overwhelming, it's just overwhelming. Right now, eh, but
when I first started reading, they were experiences of boys and girls
where they would get their poop and where they would throw it
against the wall. I mean, here I was reading all these experiences
and just crying. My son was little, right, and I was just crying and
crying. So, now I know where not to read, you know?
The same instinct led her to send her husband to check out the special
ed classrooms so that she would not be overwhelmed.
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Sofia: I was afraid to go see the special education classes, even
though I was always in them. Even though, like I said, to go get the
teacher, in the IEPs. My husband, I sent him over there to check
out all the classrooms. And so, he said, you know, you have to help
me. I went and met with some of the teachers I used to work with. I
used to work for Locust Elementary School. I spoke to one speech
therapist that introduced my son, but I'm shaking as I'm taking my
son in her classroom. She goes, you know, he's doing real good.
But he didn't speak that well then, he didn't speak hardly. And she
goes, ―but you know, I can't give you a diagnosis. I'm your friend,
she said, but just, this is how I would look at classrooms, she said.
Look at your son, and if they're like--, you feel they're like your
son, you'll feel it,‖ she said.
She overcame her fear of this process in order to go check out the
classrooms that her husband had scouted. She finally met a teacher
who she felt good about, unfortunately an incident in the classroom
during the first week made Sofia question her judgment in sending her
son there.
Sofia: So, I finally went to see one teacher. My husband went to see
one where there was only kids with diapers. This is all at City
School District. And he's like, ―No, my son's potty trained. Why are
they going to put him in…?‖ and they didn't speak. I went to see
many places with City School District. I only met one lady, real
nice, Miss Mars. She said her sister had autism, and some other
and she's like, ―I'll take care of it, don't worry.‖ She was young. She
looked like she had a good spirit. And, my son was there for a
week. And at the -- I have it all written down, okay. My son
scratches, you know. Because he can't communicate to you. You
know, the typical autistic reality. He scratched the assistant, and,
apparently, when I picked him up, I saw something different in my
son's face. I said, ―What‘s happened?‖ I said you know how you get
that and I'm like, ―What happened?‖ And the teacher and the
assistant looked at me and they said, ―Well, we need to talk to
you.‖ And I'm like, ―What do you mean?‖ And she's like, ―We,‖ the
teacher spoke, not the assistant. She said, ―We had to cut
Roberto's nails.‖ I said, ―What do you mean we had to cut Roberto's
nails?‖ And she goes, ―Well, he was scratching, he drew blood.‖
And I'm looking, and I'm like, ―Okay, I understand, but I have my
cell phone, I'm out here. I'm ready to pick him up anytime, it's just
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half day, you know. I'm available, I told you from the get-go. I went
in and I introduced myself to the principal, and to the assistant
principal.‖ They knew my old boss, Sarah Nickleson, who was at
Locust. You know, I was there. And she said, okay. And I said,
―Well, what happened?‖ And she goes, ―Well, you know, we had to
cut a scissor.‖ So, I go, ―You guys have, um, clippers? You know,
those nail clippers.‖ She goes, ―No.‖ So, I'm like, ―Well, then.‖ So,
there, my hands clam, I'm--, my heart's beating. I have my little
guy in my hand. I'm like, ―Okay, so what'd you cut his nails with?‖
She said, ―Safety scissors. The classroom safety scissors.‖ And I
look at my sons hands, and I see it. You know, a little red, you
know, they cut, the scissors. And I'm just, I looked at her and I'm
like, ―That is not okay with me.‖ You know?
K: Of course.
Sofia: I was just, I couldn't believe what I was hearing. It was like,
am I having a nightmare? And my son, can he tell me what
happened? But you know, conscience, and God. And I looked at
them, and I'm like, I'm calling my husband. I'm like, I'm shaking
here. I don't know what to do. The next thing, I call the assistant
principal. I do the whole they're like, ―Well bring him in, we'll work
with him, we'll do this.‖ Oh my God, I turn the corner to take him
the next day. He's screaming. Vomiting and screaming. And I'm
like, ―I will not leave my son here.‖
Sofia‘s fragile trust had been broken. This situation which felt like a
nightmare to her has guided her decision making since this time. She
has continued to be cautious about placement for Roberto and her
interpretation of how this traumatic incident impacted Roberto internally
has led Sofia to pick a style of therapy intervention. It led her to
interpret the actions of the OT who pulled her son out of the ball-pit by
his legs as ―a little rough‖ though it was a relationship that eventually
turned out to be beneficial for Roberto.
Sofia: She, she, we had, uh, we had the meeting. Oh no.
Everything was blamed on the assistant now. The teacher didn't
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know, she didn't see, but she was the front one, she was the front
lady, she was in front saying, leave. And so, when I'm talking to the
assistant principal, and my husband's on the other line, the both
of them of them are there, I looked at them and I go, there is no
way in God's world instead of using the other word, of course there
is no way in this world that I will allow you to have my son in your
classroom. I don't trust you. I will not, I cannot trust you.
K: Of course.
Sofia: So, my son went out of the school because of that incident.
And of course, I got an advocate, I got an attorney. You know, my
thing is, just, I don't want to prolong this. Sue her, sue her. Sue
her? Sue City School District. I say, you know what, let's just my
friend, I call her, Harriet, that's her name. She said, ―Sofia, have
you looked up the Special School?‖ and I said ―No.‖ So, I looked up
the Special School. She goes, ―Go and see the classrooms.‖ So my
husband went first, of course. And then, I went and saw the
classroom and I'm like, you know, I think we're going to go with the
Special School. So, she we went to Mapleton, and um, met with, I
met with the director first to tell her what had occurred.
K: Right.
Sofia: See. And it was just a nightmare, you know. The whole thing
was a nightmare. My son didn't want to go to school. Just, the
whole thing sort of makes me like this. Just to think of everything
we had to go through for Roberto. When it was so he had lost a
whole year, okay? He had lost a whole year. He was starting two
weeks late. So, he lost a whole year of preschool, and it was
summer school time. And they were like, ―Well, you need to pick a
summer school.‖ I'm like, yeah, ―But I'm barely getting you guys
calling me back.‖ It was chaos, it was just chaos. And he was
seeing an OT from City School District and I had to work with her,
and she was not too great, either. She was a little rough. He didn't
like her, because, it was just another experience. He went into the
ball-pit, he loved the ball-pit, and he didn't want to get out of the
ball-pit. She grabs him by his legs and yanks him out. So, you
know, here we're and now, what I know, I wish I would have
known now… No, would have known then what I know now. And,
anyways, she helped, in the end, you know. She said, Roberto's a
very you know, the IEP is very detailed. Bottom line, he started
school, and he would cry, and whatever, but they helped him.
K: Yeah.
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Sofia: No more crying. I didn't need to walk him to classroom. They
helped produce more of an environment that you're not afraid that
your child has special education. No one's there, ―Oh my God,‖ you
know, looking at you. And you know, they have a totally different
environment, you know. So, it was okay. That brought me peace of
mind.
For Sofia, finding peace of mind that her child is adequately cared for is a
crucial aspect of her mothering. She is focused on protecting this child,
a child who can not necessarily tell her when something is wrong and it
makes for great anxiety for her.
S: But you know, it's, it's been, you know. I spoke to her directly
because I said, ―You know, I hope you can understand that if my
son needs anything at all, just call me. Please.‖ And everybody
was, ―Oh my God, I can't believe that they did that,‖ but it
happens. And it happened to my son. And at this point, if he's
going to come in with behavior, yes he already has it, but now even
worse.
What she sees as her failure to protect this child has affected his ability
to participate in school and his therapeutic activities, important
occupations for this child and this family.
Sofia: And to this day, my son will not go by that school, calm. He
can't hear the name Miss Mars, and he cannot hear the name
Marisella, because he starts to scream, because he starts to vomit.
I can't ever take that away from him. And sometimes he'll just sit
down and say, ―Mom,‖ he just says ―Mom,‖ right, he calls me Mom,
thank God, he says, ―Go Miss Mars?‖ I say, ―no, we're not going to
Miss Nash.‖ He goes, ―oh, you want to go Miss Mars?‖ And he
starts to cry. So, it's like, if he, if he goes through these memories.
He goes, ―Marisella? Bye Marisella.‖ You know, he says it, like, if
he does this repetition to himself, I don't know if you've heard that
before.
Kim: Yeah. Not necessarily, no. Not about a traumatic event like
that.
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Sofia: Yeah. He'll come back. And he'll ask us. He'll look at us
straight in the face, and we'll go, ―No, we're not going to go.‖ So, we
have to tell him where we have to go, where, you know, where we
have to go before we exit the house. Because if he doesn't know
when we exit the house, he'll vomit right before we leave the house.
That will forever be my son, at this point in his life right now. And
that's been occurring in the weekend where, it's not just food
related, you know. With the smell. But his emotional state. And he
still tippy-toes. And he receives Floortime, not ABA. Because I said,
ABA's a little bit more intrusive. And because of everything that's
occurred, I need to go inside my son, you know. You know. So,
we‘re, they think that has something to do with anxiety, too. So,
we're just I'm doing the best I can, at this point.
Sofia feels she needs to get inside her son, to access his emotional world
in order to help heal the trauma from this incident. She was certainly
traumatized by it and she is afraid that this is something that will impact
her son for the rest of his life. She is committed to getting inside him,
but it is a commitment to doing it in a gentle way. She sees the intrusive
nature of the ABA treatment as another threat, and so chooses Floortime
as another protective act of mothering.
Sofia has been able to move on from this traumatic story. She has
put Roberto into a new school and has formed some sort of trust with the
people there. She stays close by purportedly to deliver the hot food. I
wonder though if this is partly a reaction to the previous incident. If
Sofia stays nearby in order to be ready to rescue her son if need be and
is using his very real difficulties with food as a justification for her need
to stay close and protect him.
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Gabi’s Story: Looking for Alternatives
Gabi is a woman in her late thirties. She lives with her husband
and her four year old son Davey in a medium sized house in the valley.
Gabi‘s home has several modifications that are obviously devoted to
treating Davey‘s autism. From where I sat in the kitchen and living room
during our interviews I could see a large swing structure taking up much
of what would have been the dining room of the house. There was also a
therapy ball stored under a desk, a variety of picture schedules mounted
on the walls, and a bar across the doorway to Davey‘s bedroom that can
be used to hang a swing from. The kitchen counter was covered in
bottles of supplements and shelves in the bathroom were loaded with
natural remedy products. Davey is non-verbal and uses picture
exchange cards (PECs) or an electronic communication device to express
his needs. When not being directed by an adult he seems to be interested
mostly in holding and tipping water bottles in front of his face to watch
the water move. During our first interview Davey took my water bottle
and Gabi shared that ―He‘s just a water-bottle guy!‖ There were a variety
of water bottles around the house, some with colored water and glitter or
other small toys in them. Davey receives most of his services in his
home and is engaged in discrete trial training and other therapies for
several hours each day. Gabi works from home and spends much of her
free time researching alternative treatments for Davey on the internet.
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From the time Davey was an infant he has had severe gastro-
intestinal difficulties. Gabi noted that she was able to successfully
breastfeed Davey only once during his infancy though she tried for
months. She blames the hospital staff for giving Davey a bottle when he
was 2 hours old and for giving him vaccines that she was unaware of
right after he was born. She feels strongly that Davey‘s autism has been
caused by exposure to some sort of toxin or a combination of toxins
perhaps in concert with him having a genetic predisposition to not being
able to clear these substances out of his body well. She gave me detailed
verbal descriptions of the science she believes supports this and
commented that she wished she had paid more attention in high-school
chemistry and biology so she could better understand some of the
complicated science involved in some of the alternative autism
treatments she is seeking out.
Though the mercury hypothesis of autism has been repeatedly
discredited in main-stream scientific studies (Hertz-Picciotto, et al., In
Press), Gabi believes that Davey was exposed somewhere to high-levels of
mercury, possibly from contaminated high-fructose corn syrup that she
thinks may have been present in his infant formula. In addition, she
believes that due to his GI difficulties which include ulcers throughout
his GI tract he is more likely to absorb toxic substances. She is using a
chelation protocol to try to get some of the mercury and other heavy
metals out of his system.
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What Davey eats. Davey eats a very limited diet and it is made
more limited because Gabi believes that he needs to be on a low sugar,
yeast free diet to address some of his GI needs. He currently eats only
turkey slices, yogurt and hotdogs rolled in digestive enzymes. She is not
serving him any of his preferred carbohydrate foods even though this has
been very difficult for both of them. She feels that Davey is angry over
her removing these foods but she feels strongly that this is the right path
to try to heal some of Davey‘s GI troubles.
Gabi: Um, and his latest thing now he‘s very angry with me
because I‘ll take away his favorite carbohydrate and he‘ll grab me
by the hair and pull me down and bite my head. I‘m the only one
he bites so that‘s ok. So, he‘s pretty angry with me, but that‘s
sometimes you got to let them be angry with you. It‘s ok to be
angry, but you‘ve still got to do it.
Gabi is focused on fixing the problem of autism even if it means making
her son uncomfortable or unhappy. It‘s ok for him to be angry as long as
she is able to do the treatment she is trying with him.
This stance comes partially from Gabi‘s struggles to help her son
get rid of long term problems with GI pain. She feels that he‘s had
almost constant pain since his infancy and she has tried all kinds of
traditional medical intervention without much success. She says ―he‘s
had so much pain and so much distress and I‘m talking pain like you‘ve
never…‖ She is willing to explore all avenues to deal with this pain, a
function of her protective mothering and feels like she was let down by
the traditional medical system. This has led her into the murky world of
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alternative treatments. She has done extensive research online and has
gone to a variety of conferences aimed at explaining (and often selling)
programs of alternative treatments. Some of these involve the use of
large numbers of nutritional supplements while others are focused on
treatment techniques such as spending time in hyperbaric oxygen
environments or receiving visceral manipulation where a therapist comes
over and attempts to physically shift the organs in Davey‘s abdominal
cavity. Gabi‘s use of these will be further discussed in Chapter 7.
Gabi has had a full work-up done by a Defeat Autism Now (DAN)
doctor who recommended an extensive regiment of nutritional
supplements but she has been unable to find a way to get all the
supplements into Davey or to fully remove gluten and casein from his
diet due to his dependence on yogurt as one of his staple foods.
You know there just-it‘s kind of tough. I mean she‘s a wonderful
DAN doctor, but so many people or ordinary people-even doctors
that you talk to, well you just have to make him eat this. It‘s like
you have no idea the intensity with which I want him to eat that,
but you‘re telling me just do it and I‘m getting vomit, so please
reveal the magic to me since I‘m so stupid, how this is supposed to
happen.
Gabi is convinced that there is a ―scientific‖ answer that will help her
child. If only she could get these perfectly planned out supplements that
the DAN doctor has prescribed into him, if only she could find the
answer to stopping the GI pain, if only she could find the right alternative
therapy to help him, she could protect him from the scourge that is his
autism.
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Gabi is apparently the only parent in the study who has strongly
embraced the community of parents who are advocating for curing
autism and for using alternative methods of treating autism. She uses
the resources from groups such as Autism Speaks and Talk About
Curing Autism (TACA) which is Jenny McCarthy‘s group and website.
She says:
The thing that has really helped me the most there‘s an
organization called um, um, well there‘s a bunch. I‘ve learned a lot
on the internet. I‘ve learned a lot from TACA, I‘ve learned a lot from
National Autism Society and there is a autism conference, Jim
Adams is the guy who runs it out of ASU. And he‘s done a lot of
research there, Jeff Bradstreet is involved with them, the movers
and the shakers and the thinkers.
Gabi seems to look at autism in a different way that the other mothers in
the study do. To her autism is the enemy, something that snuck into her
child‘s body and that she is responsible for chasing out. Her views seem
to fit more closely with some of the first person narratives I‘ve read such
as Park‘s siege metaphor (1967) or Iversen‘s (2006) commitment to Cure
Autism Now (CAN). Perhaps only coincidentally both of these memoirs
are also written by white women.
Conclusion
As noted in the introduction, each of the sections in this chapter is
a description of a different way to mother a child with autism and a
feeding problem. The mother‘s each have stories to tell that highlight
who they are as mothers and how they understand their unique child.
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Their stories were not presented in a single narrative, but over time and
in a depth that is rarely achieved in a clinical context. The deeper
understanding available to me as a researcher allowed me to understand
motivations that would have baffled me as a clinician working with these
families and these motivations will form the basis of the following
chapter. The chapter after that looks more specifically at how the
occupations of these children and families were impacted and it is
followed by a third chapter that more fully explores mothering in theory
and in the practices of these women.
As previously noted, the feeding stories I heard during this
research were deeply intertwined with stories of mothering and day-to-
day life. They occasionally did stand alone, but more often they were
wrapped up in the stories of who these women are as mothers and who
they see their children as being. They highlighted the complexities of
these families‘ daily routines and the complications that come from
mothering a child with autism.
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Chapter 5: Little Victories
Introduction
One commonality in all of the mother‘s stories I heard in the
course of this study was the presence of what I call ―little victories‖
around feeding and eating. For each of these mothers there have been
moments when something seemingly small has held great meaning for
them. They each tell stories of something that might seem ordinary to
onlookers that becomes extraordinary when framed in the context of
their greater stories about their children‘s struggles with eating. In this
chapter I have collected several of these stories. These stories are
important first off because they reveal something about what is most
important to these mothers, they highlight the mother‘s beliefs about the
purpose of food. That may seem like a strange statement because of
course food‘s purpose is to provide the calories necessary to keep us alive
yet in our lives food is actually evocative of so much more. As Coulihan
so eloquently put it,
Food is a many splendored thing, central to biological and social
life. We ingest food over and over again across days, seasons, and
years to fill our bellies and satisfy emotional as well as physical
hungers. Eating together lies at the heart of social relations; at
meals we create family and friendships by sharing food, tastes,
values, and ourselves (1999, p. 6).
The mother‘s stories illustrate how each of them assign different values
to food and eating and how this creates different priorities for their own
work with their child on feeding and for clinical intervention. This
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information is crucial for clinicians working with these families to
discover. If a clinician is working on getting a child to eat one kind of
food when the mother‘s priority is another, it follows that she may not be
successful in incorporating that food into the child‘s life outside of the
clinical time.
The second reason these stories are important is because they
highlight the unique theories these mothers hold about mothering. The
moments they choose to focus on bring forward what is most important
in their work to shape their children‘s future.
The Ordinary Becomes Extraordinary: The Meaning of French Fries,
Chicken Nuggets and Pizza
The women I interviewed have pulled each of these stories from a
huge swatch of daily experiences because they represent the
extraordinary. These are stories of a moment that jumped out of the
stream of everyday life. They are marked and contribute to the sense
making of these mothers. As Mishler (1986) reminds us, ―a general
assumption of narrative analysis is that telling stories is one of the
significant ways individuals construct and express meaning‖ (p. 67).
Through choosing these stories to tell, these mothers mark them as
important in their meaning making. Several of these stories are about
French fries, a fact that initially struck me as unusual. French fries are
or were at one time a staple food for four of the five of the children of the
women in this study.
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Melanie has labeled the day her son first ate a French fry as ―The
French fry day.‖ This day was particularly important to her because one
of Melanie‘s most important goals for her son was that he eat something
that was easily available when she was out in the community. She noted
that ―when he started eating things like French Fries, you know, I can
get French Fries anywhere, like McDonalds, or anywhere. …. It took the
panicky feeling away.‖ Because Melanie associated Jabari being hungry
with him having behavior problems and even getting violent she often felt
―panicky‖ when out in public without something on hand that he would
consistently eat. This led her to carry huge amounts of food with her
before Jabari began consistently eating French fries. Therefore the first
day he ate a French fry was a momentous one for Melanie.
Melanie: Oh yeah, oh! The French fry day! Let me tell you about
the French fry day! (both laugh). I, this was before I gave up all the
junk. I was with— my husband went out to In-n-Out to get
something to eat and I said ―Oh pick me up some French fries.‖
And so he did and he came back and I was with a developmental
specialist, we were, you know on the floor. And so, we were just all
kind of sitting around playing and Jabari just kind of looked at my
French fries. And I said ―Oh Jabari do you want one?‖ and he was
just kind of like ―yeah‖ and I don‘t know if he said yeah or his eyes
said yes, I don‘t remember, but he took one and he put it in his
mouth and he kind of (makes chewing noises) and he spit it out.
And we were kind of like….(Makes open mouthed surprise face).
All of us, my husband was there, the developmental therapist, Miss
Betsy was there and of course I was there. And we were all just
like ―Ahhhh!‖ and so we got a napkin and we put it down and he
kind of, he did that a couple of times. And we were just like…he
didn‘t eat it but he [makes munch, munch, munch noises]
Kim: tasted it. Moved it around in his mouth… [trying to describe
what she‘s doing with her mouth].
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Melanie: Yeah! That was amazing to us!
This is particularly amazing to Melanie, her husband and Miss Betsy
because of how it fits into Jabari‘s history of not eating any solid foods.
He was dependent on only Pediasure, a formula for children, at this time.
Melanie shared that ―the French fry, the Cheerio, and the six bites of
pudding are all he took in a year.‖
As documented in the chapter about Melanie‘s story, the six bites
of pudding happened in a therapy session and Melanie couldn‘t replicate
it at home. She remarks that she is adding the Cheerio because it was
mentioned in a report from that time that he took a ―bit of cheerio‖ but
she doesn‘t ―remember the situation.‖ She says ―I just remember that it
happened. Which is weird. You think I would remember that.‖ Perhaps
Melanie doesn‘t remember this particular story because it didn‘t hold the
meaning to her that the French fry day did or because it also happened
in an intervention situation where she wasn‘t present. A bit of Cheerio is
less important to her than French fries because it has less functional
impact on her day to day life.
Jen‘s story of the first French fry is somewhat similar, though Jen
doesn‘t focus on the importance of French fries as a convenience food,
she did work very hard to get her son to eat them for other reasons.
Jen: Um, the first time he ate a fry. I remember the fir--, we used
to buy the Happy Meals just for the toy. And then, um, I don‘t
know he picked up the fry. He just instinctively--, there‘s
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something about a fry I think is appealing to children in general or
I think is just--, fries are appealing.
For Jen, this story is more about her child eating a food that is common
to children all over the world and finding a food that appeals to him. Jen
often talks about what she knows Benjamin would like to eat in our
interviews, commenting that ―if he‘d only taste it, I know he‘d like it‖
about several different foods.
The pleasure aspect of eating is important to her and she wants
her son to share in that pleasure. Many times she talks about how
much she thinks Benjamin would enjoy a certain food and she expects
that someday he will figure out how much pleasure can be found from
food. She says: ―We figure one day he‘s going to surprise us and he‘s
going to— I told him the other day I said ‗Dude, try chicken. You are
missing out. It is good stuff!‘ ‗NOO!‘ I go ‗Dude it‘s a chicken nugget.
Kids die for this!‘‖ Eating French fries has become something that
represents finding this pleasure and entering into a world-wide culture of
kids eating kid food. She continues with the story of buying the Happy
Meals after I asked her if she ate the fries when he wouldn‘t.
Jen: I would eat them. And then one day he got it and he tasted it
and then he discovered salt from the fries and his little eyes lit up
like ―Whoo, cha ching!‖
Kim: Was it--, before that was he only eating the formula?
Jen: Yeah, it was only formula. And, and we had been trying fry,
the reason we were trying fries, because we knew it was universal
like to almost every kid in the world likes fries. So we kept buying
the happy meals over and over and over and then I would just give
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him the box. And I wouldn‘t tell him anything and he, I said you
know, he‘d get the toy and that was it.
Jen was determined not to push him by telling him he had to eat but she
repeatedly gave him the opportunity to discover the ―Whoo, cha ching!‖
quality that makes his eyes light up from the pleasure of the taste of
French fries. Finally one day he surprised her; he ―got it.‖
Jen: But one day he actually got it and he looked at it like ―This is
interesting‖ and then he licked it and then he bit it and I will never
forget, I will--, cause I was driving my car and I almost got in a car
accident ‗cause I was looking in the rear--, in the mirror. And I see
him go, like with the tip of his tongue, you know that look when
they‘re not sure like what this is? And so he goes, licks it and then
he‘s like, and you just see his little eyes light up from the sal--, and
then he‘s like [makes sound to represent eating quickly]. He just
sti--, and the next thing you know, he ate a bag.
Kim: Of fries?
Jen: Of fries. He just ate it. And we‘re like--, and I came home, I
was like ―Oh my God! He ate a bag of fries!‖ So of course for
months on end, every day my dad or my husband or me would
take him.
This event is momentous for Jen because not only does he taste a
French fry, he eats a whole bag. For a child who has been formula
dependent this is a major victory. Her theory that if he only tastes these
foods he will come to know how good they are and eat them is borne out
by this experience. Benjamin does not generalize this to all French fries.
For quite some time he will only eat French fries from McDonalds yet this
is still a huge victory for Jen, one that almost makes her have a car
accident because it is so exciting for him to be eating any solid food.
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Rachel has a different perspective entirely. She places the highest
value on foods that meet her ideal of nutritional balance. She is
concerned that her children get the proper mix of types of foods and
protein is currently her biggest concern. Such a big concern in fact that
Rachel is modeling eating meat to her children even though she is a
vegetarian and finds it repulsive.
Rachel: For him, like, a model. ―If Mommy eating, I can eat.‖ That
kind of thing. Even my, myself, I don't eat meat. I don't eat
chicken. It is horrible, to tell you the truth. But, for him, I am
doing that. (laughs) Yeah, this is the first time I am doing that.
Yeah, I don't eat. But I'm okay.
Kim: Yeah. Yeah. It's amazing what mothers will do.
Rachel: Yeah, it's hard. Even the taste. It looks like some kind of
medicine on it, just, just, taste is not right. I don't know. Even the
first time, when I took, I said, almost vomiting, oh my goodness, I
said, just I pray, that everything will be okay, I said. Just, to push
myself to eat it. ―Nothing is going to happen,‖ you know, just . . . I
did it.
When I probed about why she has focused on eating meat even though it
is not a food she eats she answered.
Kim: So is the meat, you've focused on the meat because . . .
Rachel: Because of the protein.
Kim: Because of the protein.
Rachel: Yeah, even the Pediasure, and -- it's a little amount I can
give him day and night. But it isn't worth it. And he's drinking
milk, yeah, he can get some of them. But, it's not really a whole
protein he can get. Eggs, he cannot eat, so. Takes time.
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She is willing to put in the time, to try eating a high protein food
that she thinks he might accept because she is devoted to making sure
that he gets enough protein. When I asked her what she thought would
happen if he did not get enough protein she told the story of not eating
enough protein herself as a child and ending up underweight and
frequently hospitalized.
Rachel: I was underweight.
Kim: yeah.
Rachel: Like 90 lbs. so…I don‘t want that to happen. For them to
end up in the hospital all the time. [Like] I did.
Luckily a few months later a moment of victory arises when
Lawrence begins eating Ethiopian bread and touching and licking an
Ethiopian dish that Rachel describes as a sauce made with beans.
Rachel: Uh, for the first time, maybe, this is two weeks [ago] or
something, Lawrence is start eating bread. We call injera. But he
started to eat. I was wondering, wow, if he does that, that's
wonderful. I told him, ―No pressure, nothing. Just, ah, you want to
eat!‖ And then, I'm eating. Eating! Just like that. All of a sudden,
he ate. I was shocked.
Kim: I bet.
Rachel: And then, okay. And then, after three days or something, I
make the sharo, we call sharo, but it's beans. Like a sauce, when I
make it that way. And then he came, he eat the injera. Why don't
you try, you know, let me try? Like this. …. And then, he put his
finger, and then he licks it. I , oh, I cannot believe that! I said
Okay. This is good. That's it, for me. And uh.
Kim: ―That's it for you,‖ meaning?
Rachel: Just, I couldn't believe that, and then now he going to eat,
starting. But I'm not going to push. But no matter what, whenever
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I'm eating, just he can come and -- back and forth. And allow him.
But, uh, to sit down and then eat -- to say that, I'm afraid of that.
So, still uh, at his own process, I guess.
Kim: Is it important to you that he eat some of the foods of your
culture?
Rachel: It's not important, but the only thing he can get protein,
only beans.
Tasting beans, a food that Rachel considers an adequate and important
protein source is tremendously important, not because this is a food that
comes from her cultural heritage but because it means he will be able to
get what she considers adequate protein without having to eat a food
that Rachel finds unacceptable. She had specifically mentioned a hope
for him eating this dish two months before in our first interview and now
she is hoping that this is the beginning of the fulfillment of this hope.
She later goes on to say that if he continues to eat the beans and
increases his volume of them, ―I‘ll tell you the truth, I‘m going to stop
that meat.‖
Each of these stories represent an ordinary food that has taken on
extraordinary meaning to these mothers. The priority they place behind
these foods becomes evident by the stories they tell about them.
Sharing the News
Another interesting aspect of Jen‘s story is how she reports it back
to the other members of her family. This is often an important aspect of
these victory stories. Jen comes home saying ―Oh my God! He ate a bag
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of fries!‖ She‘s excited about telling me and even sends out an email after
he eats a chicken nugget
Jen: but we were just really excited, I was like ah, I can‘t wait to
tell Kim. [Laughs] You know we, uh, we sent like a massive email,
like ―Benjamin took a bite of a chicken nugget!‖
Melanie tells of reporting the little victories that Jabari makes to
her friends, family members and the professionals they work with also by
email, a practice she soon made a regular habit of. She noted the first
time it happened after Jabari ate some pieces of gummy fruit snacks.
Melanie: We were at, in the car and he was eating a fruit snack.
Oh no, I know, I got a fruit snack for my daughter and I got one for
me. But I always kind of offered it to him because someone told
me that I shouldn‘t expect him not to eat, I should expect him to
eat. So I was like ―Oh, Jabari do you want a fruit snack?‖ and he
was like ―Yes Mommy.‖ And I was like ―ummm that was mine.‖
(both laugh) So I gave it to him and when I stopped the car there
were some missing and at the time he wasn‘t chewing and
swallowing so I was like ―AAAAAHHHH!‖ and of course I wrote an
email to like everybody and it was the first time he had chewed and
swallowed since, I think since he had stopped, that whole period of
not eating. So we were so excited about that!
This moment is one that stands out merely due to the unique nature of
it, being that it was the first time he had chewed and swallowed
something in over a year but it also notable because it reinforced a
message that Melanie had internalized; the message that someone had
told her about expecting Jabari to eat even though he hadn‘t in over a
year. It has to be difficult to maintain that kind of optimism. In one of
our interviews, Jen described her process of constantly offering Benjamin
foods for similar reasons, continually hoping that he would accept
something. She says:
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[It‘s] like ―Here.‖ ―No.‖, ―Here.‖ ―No.‖, ―Here.‖ ―No.‖, ―Here--,‖ it‘s like
constantly being rejected, that‘s what it‘s like. It‘s like asking
somebody on a date and telling them, they‘re telling you no all the
time. But with food.
Jen compares this to being rejected for a date, a personal rejection of the
self. This isn‘t just a rejection of the food it‘s a rejection of her as a
mother. Therefore when one time, after the mother has asked over and
over and over, the child says ―Yes‖ as Jabari did with the fruit snack, it is
momentous and worthy of telling the world.
Rachel doesn‘t tell stories of telling others about her victories but
at each interview she was very eager to tell me these stories. I could
barely get the recorder on for the third interview before she launched into
the story above about tasting the beans. Much of Rachel‘s support
seems to come from her sons‘ therapists. Her family mostly lives abroad
and though she does have one sister who lives a few hours away she
doesn‘t see her often because she ―cannot handle it here‖ and she cannot
go visit her because her sons cannot sit still long enough to travel. She
doesn‘t feel she has friends who understand what her children need and
how she has chosen to parent them.
Rachel: I have one sister who lives up north. But she‘s back and
forth, she cannot handle it here.
Kim: Oh, yeah, gotcha.
Rachel: She‘s back and forth. But I cannot go visit them because
two of them….especially Lawrence, he cannot sit.
Kim: Um…Um Hm…
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Rachel: If he is sitting five minutes occupied with something, that
is it, he has to tippy toe toe (pounds hand on table) and he has to,
Just, just to walk and non-stop.
Kim: that‘s got to be hard for traveling.
Rachel: Yeah, yeah it is hard, very hard.
Traveling Stories
Stories of being able to travel with or without children are also
hard won victories. For Melanie, being able to leave her children with
her sister without writing out a long document on how to feed Jabari was
a remarkable moment. It wasn‘t perfect, he ate 36 muffins over the
course of the four days he was there, but at least she didn‘t have to
worry that he wouldn‘t eat at all. Jen has a story of what can happen
when things aren‘t quite there yet. She left her son with her in-laws and
they decided to try to get him off the bottle for her. Not understanding
that his feeding issues were about more than just her spoiling them they
put jalapeño sauce on the nipple in an effort to get him to drink from a
cup.
Jen: And so this weekend the issue, and the challenge that came
up was…and that is my biggest fear with leaving him is that I know
that they won‘t bottle feed him as much as I do, or try. And so for
this weekend when we had people over, we dropped him off at my
in-laws which I…and they‘re great people (Kim: um hm) but one,
they don‘t know about his diagnosis and we wouldn‘t tell them
because they‘re the kind of Mexicans that are like, [they think it‘s a
made up Anglo thing and that … (Benjamin interrupts)
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Jen: (Continues after interruption) So my issue is, I worry about
how he‘s going to eat and I worry about how they‘re going to care
for his respiratory, because he has chronic asthma. (Kim: Mm, um
hm) And so my older son went with him and we went on Friday
and you know they had movies for him and you know he was fine.
And my husband went out and bought two things of Pringles for
him so he would have them. And he told them when he got there
―Look, Benjamin no longer eats fries, he no longer eats Gold-fish.
He only wants fruit-loops, only a certain color. He only drinks milk
out of a bottle and he has to have his Pringles.‖ And them being
the Mexicans that they are, of course they wait for us to leave to
turn on him. So that night, they let him have his bottle but on
Saturday his uncle decided with my father-in-law that Benjamin
was too old for the bottle and put jalapeno sauce on the nipple.
Kim: (whispered) Oh no.
Jen: So Benjamin lost it. He was like, ―It‘s no good. It‘s gross. It‘s
broken.‖ And he was really angry at him.
Kim: uuuooh. [Of course.
Jen: [He was like ―I don‘t like you, go away.‖ So the whole
Saturday, and of course they‘re not going to call us and tell us. He
did not have one single drink of milk all of Saturday. Because even
though they washed and sterilized the nipple again and they gave
him, they had to buy a new one. He wouldn‘t take it. (Kim: Um
hm) Because he said ―No it‘s bad.‖ So he actually didn‘t have milk
again from Friday until Sunday when my husband picked him up
and it was, and my in-laws were cracking up. They were like ―Oh
it‘s really funny, he needs to get off the bottle.‖
This story tells so much about Jen and her mothering priorities.
As discussed in Chapter 4, Jen and her husband have chosen not to tell
people about Benjamin‘s autism diagnosis because they prefer they get to
know him without that label coloring their expectations. Even their in-
laws don‘t know and Jen believes they wouldn‘t understand. Jen‘s
priority in mothering Benjamin is to let his personality come forward, to
let him have typical social experiences and to celebrate the diversity she
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finds in him. With this story she reveals that this priority took
precedence over revealing what may have been significant information to
her in-laws, information that might have prevented her brother-in-law
from trying this trick on Benjamin. Fortunately this story had a happy
ending because Jen‘s prioritizing of Benjamin‘s emotional state led him
to trust her enough to give him a ―good‖ bottle once he was back with his
parents.
Other People Think I’m Crazy: The Social Cost of Celebrating Little
Victories
As evidenced by Jen‘s story about her in-laws, people don‘t always
understand how hard-fought these victories are. There is a cost to telling
the world about these things because there is no guarantee that others
will understand that this is momentous. A common feature of these
stories is the claim that other parents or onlookers must think that the
mother is crazy for being so excited.
Melanie: And then, I um, I, when he started eating the licorice and
the lollipops with Hannah [the feeding therapist.] I remember
thinking that everybody else in the whole world is probably going
to think I‘m nuts, but my husband and I were just SO happy that
he was eating anything! We went out and bought a huge bag of
Dum Dum lollipops, one of those big tubs of the licorice, you know
the big ones? (Kim: laughs, Yup, yup.) People thought we were
CRAZY!
Sadio [her daughter]: Crazy!
Melanie: Crazy. But you know what? We were just so excited!
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Being excited about your child eating candy violates the social
norms because it is expected that all children like candy and that
parents generally withhold candy because it is unhealthy. Most feel that
getting a child to eat candy is easy but this is remarkable precisely
because for these children it is not easy. For Jabari it has taken the
specialized intervention of an occupational therapist to get him to eat
lollipops and licorice, but there is no way for the greater world to know
that. Melanie suspects that people thought she was crazy for being so
excited about something as mundane as a child eating candy because
they had no idea how this fit into a larger picture of a child for whom it
was a struggle to eat anything.
Jen has a specific story of a time when she felt this acutely. She
had taken Benjamin to McDonalds, a common destination for them since
fries became a staple food for Benjamin.
Jen: And it‘s like ―OK, you have to touch the nugget‖ and he went
(pause as she demonstrates tapping something with her finger).
Like really quick. And then he got it and quickly tossed it to me.
So I made him touch all of them. I said ―Will you at least give it to
me in my mouth?‖ So he could give it to me in my mouth and I‘m
like ―Oh it‘s so delicious.‖ And I‘m doing everything that Kathleen
[the feeding therapist] is telling me to do. And everybody in
McDonalds is just looking at me like ―This lady must be really
mentally retarded because I was talking to him like ―Oooooh
Gooooood!!!‖ Like ―Ohhhhh Yuuuuuum.‖ (smacks lips) like using
my tongue! I was totally doing everything she said but people were
like… and they look at you like ―You are on drugs or you are
mentally retarded.‖ Because like the other kids are just chomping
down their food and he‘s just like ―No, nope‖ doesn‘t want it. But
we tried it though!
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The victory here is only a touch, only being willing to hold the
nugget and put it into his mother‘s mouth but for Benjamin this was a
big deal, a true victory because it was a step toward him trying a nugget
just a few weeks later. Though Jen feels that the onlookers don‘t
understand how important this moment is. These other parents who
presumably haven‘t had to struggle with getting their children to eat
what is commonly considered ―treat‖ food cannot know that Jen is acting
in a way that was prescribed by Kathleen, the feeding therapist who has
been working with Benjamin. She is violating the unspoken social script
of how to behave in McDonalds, causing people to possibly suspect that
she is mentally challenged or using an illegal substance. This is an
uncomfortable undertaking but Jen does it because the pay-off,
Benjamin touching and eventually tasting a chicken nugget, is worth it
to her. It is a victory.
The Victory of Participation: Participating in the Everyday
Occupations of Mealtime and Family Life
Coming to the table. Each of these mothers told stories about
getting their sons to the table for mealtime. For Sofia, eating together at
the table was a fairly new phenomenon, something that she had achieved
only recently through the help of her feeding therapist. Several changes
were required to make this happen. Sofia has had to stop cooking foods
with strong smells because Roberto will vomit if he is too close to a food
with a strong odor. She still cooks two meals due to Roberto‘s limited
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repertoire of foods he will accept but eating together at the table is a
victory for this family.
Sofia: And so we eat at the table it‘s one menu here and another
menu going on right there.
Kim: So one menu like for you and then….
Sofia: For my son and one menu for us. It‘s not easy. It‘s
something that we‘re now accustomed to because before we
wouldn‘t sit together because just the smell would make him vomit
so that was a very difficult thing.
Kim: yeah.
Sofia: So he would eat by himself or I would sit down and eat with
him the food that he ate and then everyone else would sort of eat
on their own.
The social aspect of mealtime was disrupted by Roberto‘s need to have a
meal away from the strong smells of his family member‘s meals. Sofia
emphasizes that getting Roberto to at least be comfortable enough to stay
at the table is important.
Sofia: But you know we‘re trying to get him to sort of tolerate. And
thank God with Gretchen [the feeding specialist] we‘ve been able to
have him tolerate to sit with us.
She is thankful that he can tolerate sitting with them. She chooses the
word tolerate and this seems to be appropriate as this is obviously still
not a pleasant time for Roberto. He still occasionally runs to the
bathroom to vomit. But by him tolerating this time and Sofia tolerating
that he may have to leave the table they are able to engage together in
the social occupation of mealtime. The occupational therapist, Gretchen,
has been instrumental in helping this to occur. Sofia emphasizes that
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she‘s looking at food and her child in a different way since starting to
work with Gretchen.
Kim: How did you make that change? How did you get him so that
he's sitting at the table?
Sofia: Again, through a lot of help. You know, of course, Clinic B
has been a big, huge help for me because, you sort of tend to, you
look at your child in a different way, and food in a different way.
And --
Kim: Can you give me an example of that?
Sofia: Well, when we would sit with Gretchen, Gretchen's like,
okay, well, it's time for us to you try it, let him try it, so we're all
trying it. It was hard, at the beginning. You know, it's difficult in
the beginning. He's, he was okay, as long as everything was calm.
And it is. But, she would tell us, do you guys eat together? And, I
spoke to her and told her that that was the situation. She goes, oh,
we need to, sort of, implement. And through her help, I was able to
sort of say, well, okay, maybe I won't take out food that's too
much, so much odor, maybe meat. Maybe we can do pasta.
Odorless things at the time, so he won't get too overwhelmed. And
we started, one at a time, sitting with him. But everybody was
there. So, maybe we wouldn't eat, so that everyone would be there
with him. We would sit down. It's difficult for him to sit down, he'd
get up and down.
K: Yeah.
Sofia: So, it just sort of worked out. I sort of just started bringing
the food …. But um, he sort of just started to adapt. Just watching
his sister eat with him, me. Oh, she's not eating what I'm eating,
but it's okay, because she's not bringing it near me.
Sofia modified the foods she was cooking and she and her family slowly
modified the environment, helping Roberto to build up a tolerance to
having others eat with him and a trust that he was not going to be forced
to try the food at the table that the others were eating. Creating a safe
space is very important to Sofia. Her suspicion that Roberto‘s sense of
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safety was violated by a teacher who cut his fingernails at school (as
detailed in Chapter 4) still haunts her and frames much of how she
chooses to intervene in his life today. She needed a slow, safe process for
helping Roberto to join the family mealtime.
Even though Roberto continues to have challenges at the table, like
vomiting due to the strong smelling family meal from the previous
weekend, Sofia feels that he can tolerate this time. She says ―I‘m
learning something daily, different from Roberto. And I‘m seeing good
things.‖ One of those good things is his ability to sit with them at the
family meal.
Participating in typical childhood occupations: Pizza, birthday
cake and juice boxes. Another important aspect of these moments of
victory are when they allow a child to participate in typical occupations
of childhood that they were unable to do before. Melanie emphasizes
how having to worry about him eating at a birthday party is a challenge.
Melanie: So, sometimes I have to kind of remember, no, he doesn't
eat crackers, he doesn't eat chips, and you know I'll have to -- well,
he's at a party, whenever he gets over-stimulated, he stops eating,
too. So, we were at a party, and he just didn‘t want to eat, he
wanted to play with this little boy. And I was like, ―no, you -- come
on, let's sit down, let's eat this‖ -- it was like a turkey and cheese
sandwich, something I knew he would eat, and he was just like,
"Blah, blah," you know. At that time I kind of made him eat. The
next time, it was her [his sister‘s] birthday party, and he was just
like, ―Baloo, Baloo,‖ bouncing from wall to wall, and I didn't make
him eat anything. He didn't eat anything that day.
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Sometimes the work involved in helping him to participate is too much.
When she was involved in managing her other child‘s birthday party she
could not take the time to make sure he ate. She continues:
Melanie: 'Cause I was like, you know what, there's food here. He's
not going to starve, you know. And he just refused to eat whatever
it was. I gave him a little piece of birthday cake, and he was like,
"No!" and things like that. So, there'll be times when I won't make
it an issue, just 'cause I don't feel like dealing with the headache.
In contrast, when Jabari does successfully eat cake and pizza, it is a
marked moment, a victory. During another interview Melanie used a
brief story of Jabari eating typical kid foods, which she measured by
them being the same as what his sister was eating, and requesting a
second piece of birthday cake to show how far they had come.
Melanie: OK you know it was still not perfect, but it was easier.
For the most part I can get these two to eat the same things. You
know it was pizza and birthday cake. Yesterday he asked me for a
second piece of birthday cake which wouldn‘t have happened a
year ago.
Similarly, Rachel tells a story of her son Lawrence interacting with
the same typical kid food, pizza at his own birthday party. For Rachel,
the importance of this story seems to come from Lawrence exploring new
food textures and being able to be present with a food that he‘s formerly
been unable to tolerate. This time the victory was in smelling, licking and
kissing a piece of pizza. It was a victory because it allowed him to
participate at a birthday party, a typical social setting for a five year old
even if his way of participating was atypical. Here she tells the story of
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Lawrence‘s birthday party which had been just a week before our
interview.
Rachel: OK. When he was 5 years old, the birthday party, it was at
YMCA and his feeding therapist, Faith, she told me to try in that
party pizza. When he see pizza [in the past] he is just cover his
face, or run away. He never touch it. Even smell it.
Kim: Uh-huh. Yeah.
Rachel: So, that day, I told the counselor at the Y and then they
said, ―OK, let‘s try.‖ And then she told me, he will go to swimming,
the first thing, but he listen her a lot and then he tried the first
time he was smelling, kissing, and licking. That was, for me, a
surprise. Yeah, the other kids, they was excited and then they
wanted to eat the pizza. So, when I told him everybody‘s eating, he
look at them, he look at it and then after that the first step.
Kim: Uh-huh. Uh-huh.
Rachel: Kissing and licking, so, that‘s really, to me, it is a big deal.
Even to touch it is.
This is a marked difference from the child who would routinely vomit
when he merely smelled food cooking or saw a food with a wet texture.
Kissing a piece of pizza shows that he is making progress. He is able to
tolerate a social situation around food and to Rachel that is very
important, ―it is a big deal.‖
Jen tells another story, one that brings together many of the points
of this chapter. It is story about another typical product of childhood,
juice boxes. It is a story about the value of these small victories, of not
being understood by outside observers, and of the ordinary being
extraordinary enough to need to spread the news. Juice boxes are a
convenience food. Being able to throw a juice box into a bag and bring it
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along is much easier than packing a bottle. Benjamin has always been
very particular about the presentation of his food. As noted in Chapter 4
and earlier in this chapter, at various times Benjamin has insisted on
one specific brand of bottle, would only eat French fries from one
particular restaurant, and would only drink from a cup in one specific
location. So the moment described here is a particularly rare one.
Jen: People just don‘t realize like how monumental these, I mean
other parents whose kids have eating disorders or eating issues, do
understand. But for the most part, other people don‘t understand,
like, like when he drank the apple juice, he was at a friend‘s house,
who had a baby, and they had like baby foods and [unintelligible]
juices and stuff. And he saw Malia drink juice out of a little juice
box, so he‘s like ―I want one.‖ And so my husband was like ―Oh my
God, he‘s eating juice, he‘s drinking juice.‖ And his friends were
like ―Okay, don‘t most kids drink juice?‖ and he‘s like ―No, no, no.‖
and again ‗cause we haven‘t told most people about the autism or
in general anything, they don‘t really know anything. I mean they
just know Benjamin has some issues that he just doesn‘t like
certain things, but they don‘t really realize how severe and
pervasive the problem is and so, I mean my husband texted and
he‘s like ―Oh my God, Benjamin just had 2 juice boxes and some
orange cookies.‖ And, we were like ―Oh my God, that‘s amazing,‖
you know we get so excited because we‘re like thinking okay
there‘s hope, this kid might eat pizza one day.
This seemingly simple moment where Benjamin picks up a juice box
gives Jen hope. It allows her to believe that Benjamin might be able to
fully participate in the occupations of childhood related to eating and
mealtime and as such it is a very significant moment in his life.
Conclusion
The stories in this chapter are all related in that they are all stories of
victories: victories over the challenges with eating, confirmations of
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theories of mothering and victories of participation. These victories are
often small things, seemingly ordinary in the lives of children and
parents but for these mothers these small things have very large
meanings. They jump out of the everyday narrative and become
something extraordinary because they mean more than the everyday
stuff when the everyday stuff is made up of challenges around feeding,
eating, and mealtime. For these mothers mealtime everyday consists of a
fight to get this child to eat, a fight to help him participate in the typical
occupations of childhood that revolve around feeding and eating.
Through selecting these stories to tell me in the interviews, these
mothers have highlighted what is important to them. They have shown
me how the seemingly simple moments around feeding and eating
connect to much larger stories of their hopes for their children‘s future
and their pictures of themselves as mothers.
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Chapter 6: Beyond Picky Eating: The Occupational Impact of Autism
on Mealtime
Introduction
As discussed in earlier chapters, the symptoms of autism can have
a profound impact on children‘s ability to participate in mealtime
occupations. The deficits in language, social skills, and in sensory
processing abilities including tactile defensiveness and the rigidity and
need for routine can particularly affect a child‘s ability to try novel foods
and to interact with food in a typical way.
Some recent literature related to autism and feeding seems to
suggest that parental reports that feeding children with autism is
problematic are overstated. Studies such as Martins, Young, & Robson
(2008) attempt to frame the children with autism‘s feeding difficulties as
equivalent to those of children without special needs who are picky
eaters. To do so they match them not by chronological age, but by
adaptive functioning age. This means that the age range for children in
the sample with autism is 3-11 years while the children they are
matched to are 1-4 years old. Behaviors acceptable in a child of four
around feeding and eating are significantly different from those of an
eleven year old. Even with this adjustment, they found statistically
significant differences between the groups though they chose to dismiss
these as ―marginal‖ differences that would not ―translate into substantial
real world behavior differences.‖ (Martins, et al., 2008, p. 1885). This
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study also neglects to control for the fact that not all children that have
autism have difficulties with feeding. It does note that a ―critical
difference between these groups of children is the frequency with which
they exhibit problematic feeding behaviors‖ (Martins, et al., 2008, p.
1885). While the types of feeding difficulties are the same, the children
with autism showed up to three times as many problem behaviors
simultaneously. The interpretation given of this in Martins, et al. is that
knowing that the type of behavior is typical for children at some point in
their development should be reassuring for parents. I can‘t help but
think that this would not be reassuring to the mothers in this study who
are struggling daily with feeding behaviors that are atypical for their
children‘s current ages and which significantly affect their day-to-day
life.
At one point during data collection I found myself thinking that the
mother‘s perceptions about the seriousness of the problems with their
child‘s eating did not match up to what I was seeing the child eat or what
the mothers were telling me the child ate. For example, Melanie called
Jabari‘s intake of pudding, applesauce and supplemental formula ―not
real eating.‖ Rachel also expressed that the use of formula wasn‘t
satisfying to her as ―Drinking is not eating.‖ Both of these children were
getting adequate nutrition to meet their needs for growing, and if you
framed success in eating merely by this, they would look pretty good. As
I examined this more closely I realized that like much of the literature, I
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was narrowing the field of concern down to whether the child was taking
in adequate nourishment. The mothers on the other hand were
concerned with much more than just the nutrient values. They were
concerned about the emotional experience of mealtime for the child and
the family, the ability of the child to participate in typical occupations of
childhood revolving around food without their direct support (i.e. in
school or in social settings where the mother was not present), and the
ability of the child to be flexible around mealtime/food. These mothers
were not unaware of the child‘s progress or their ability to meet basic
nutritional needs but they were also not satisfied with just that. Their
hopes were higher for their child and for their family. The second thing I
noticed about this was that the mothers were doing huge amounts of
work to make certain that their child got adequate nourishment. This
was a round the clock job that kept them thinking about feeding or
actually attempting to get their child to eat during many or most of their
waking hours. Not only was this limiting their families‘ abilities to
participate in desired occupations and occupational patterns, but it was
also interfering with the mothers‘ other priorities for their children‘s
learning and development.
Two recent articles that claim to address issues of feeding and
autism miss this fact entirely. They compare dietary intake for children
with autism to those without (Herndon, DiGuiseppi, Johnson, Leiferman,
& Reynolds, 2009; Lockner, Crowe, & Skipper, 2008). Both studies
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conclude that the children with autism are generally meeting their
dietary needs though the Herndon et al. study did find some minor
deficiencies in the diets of the children with autism. The Herndon et al.
study does not make any suggestions for how this information should be
used but the Lockner study uses the data that reveals that all of the
children were adequately meeting their nutritional needs to suggest that
―parents should be encouraged to view the positive aspects of their
children‘s diets and strive for an enjoyable mealtime experience for all
family members‖ (Lockner, et al., 2008, p. 1363). Again, this suggests
that family members should not worry about their children‘s difficulties
with eating and while the meeting of nutritional needs is one important
function of eating, it is not the only one that is important to these
mothers as noted here and in Chapter 5. The statistics in these articles
that equate children with autism‘s diets with those of typically developing
children miss a few crucial points that are highlighted by my data. As
noted above, the children of the mothers in this study were getting their
nutritional needs met only because of a huge amount of effort on the part
of their mothers. The possibility that it is this effort that allows for the
equivalencies noted in the studies above is not considered in any of the
literature I found. In my data, it is evident that the day-to-day effort
these mothers were expending on feeding and mealtime was much larger
than I had expected. This was hidden in these reports in the literature as
much of women‘s work within the family has traditionally been. ―Family
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work is unseen and unacknowledged because it is private, unpaid,
commonplace, done by women, and mingled with love and leisure.‖
(Thompson & Walker, 1989, p. 850). The stories these mothers told me
about eating, feeding, mealtime were interwoven into so much of what
they did. It was something that was constantly present in their
thoughts, in their planning for their days and in everything they did to
care for their children. These mothers were willing to go to great lengths
to make sure their children were adequately nourished and this work
needs to be acknowledged in the literature about feeding and children
with autism.
This chapter has two major areas of focus. It starts by
acknowledging the work these mothers are doing and highlighting the
occupational impact it has on mothers and families. Secondly it explores
how these feeding difficulties specifically impact the ability of these
children to participate in their occupational lives.
Increased Mothering Work for Successful Feeding
The first way that focusing solely on nutritional content limits ones
abilities to see the real impact on these mothers‘ and children‘s lives is
that yes, the children in this study are meeting their nutritional needs
through the foods they are eating, but this is often through herculean
efforts by their mothers. Efforts such as Sofia‘s staying near to Roberto‘s
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school so that she can bring him a fresh hot lunch that he will eat have a
cost. They cut into these mothers‘ resources for participating fully in
their own occupations and in other mothering occupations.
Sometimes unusual feeding behaviors make feeding these children
more strenuous for mothers. One such behavior is the children‘s
tendency to focus on a detail not related to the actual properties of the
food. For Benjamin this is packaging. As noted in Chapter 5, Jen
worked hard to get Benjamin to eat French fries. She bought and offered
Benjamin McDonalds Happy Meals every day for a month and finally one
day he put a fry in his mouth. He quickly moved from there to eating a
whole pack of fries, but he would only eat McDonalds‘ fries. Here Jen
tells the story of how they got him to expand into eating fries from other
fast food places (he was still not eating fries made at home.)
Jen: Yes. And so the only, the way, the way we got him to eat BK
fries was that if he, because the Burger King here in Oakton has a
play place and the McDonalds doesn‘t. And he‘s like ―McDonalds
please.‖ I said ―But look, they have to play, you can play in there.‖
He‘s like ah, okay and then I‘m like ―Okay, but you have to eat a
fry.‖ ―I don‘t want to.‖ ―Just one.‖ And he doesn‘t like it because
the BK ones are browner. And um, they have more of the skin on
them, so he wouldn‘t eat them. And then finally one day he was
really hungry and he didn‘t even eat it with me, my dad took him.
And my dad is very like, ―Look dude, I‘m not walking across the
street, we‘re here. If you eat it, you eat it, if you don‘t, you don‘t‖
and my dad made him eat it. He made him eat, and then now he
eats them. He will not eat Carl‘s Jr. fries, he will not eat Jack in
the Box fries, he will eat occasionally In-n-Out fries, ‗cause he likes
the little tray that they‘re presented in. A lot of it with Benjamin is
marketing, believe it or not [laughs], I‘m sure marketers want to
know this. He loves the golden arches, who doesn‘t. He knows, he
doesn‘t know who Jesus is, but he knows McDonalds. [Laughs]
And then he likes the Burger King tray, I mean the In-n-Out tray.
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Kim: Uh huh. That little red and white—
Jen: Because the red and white is very similar to their, the red
and the white that McDonalds has. You know, the white, the little
sleeve? And this is a kid who can, it‘s connecting them. I realized
that from OT. That it, that‘s what they said is that you want to look
for foods that look similar, even in the way that they‘re marketed
and then packaged. And so that‘s why we tried the In-n-Out ones
and the In-n-Out ones were like okay, a go. ‗Cause they were a tray
and they were red and white. So, that‘s where our OT training
came in. Um, the BK ones come in a purple one and I know this
‗cause that‘s what we do. Uh, and he was a li--, so we have to take
him out of the, he pours them out of the, the cup and throws the
cup.
Not only is adding a new food difficult, each brand of a food requires a
plan, a concerted effort on Jen and her other family members parts to
add it to Benjamin‘s repertoire. Ben is even picky about which waters he
will drink.
He loves Fluoride water and I don‘t know if he can taste the
difference but when I buy him non-fluoride water he doesn‘t drink
it as much as he drinks the fluoride based water. He just really
loves the fluoride water. He loves water period but he digs fluoride
water. Like even if I give him a bottle of Crystal Geyser and Fiji,
he‘ll pick Fiji.
Jen attributes this partially to a focus on packaging.
He‘s very much about packaging and where it comes from. And so
this kid will not go and just take any bottled water. It has to be
Fuji or Fluoride water. (Kim: Hm) He‘s just really particular about
things like that. (Kim: Yeah) And if we try to chain foods by like
same package different color, he‘ll play with it, I mean now he‘ll
interact with it. He‘ll crush it and he‘ll beat it and he‘s like ―you
eat it.‖ But he won‘t eat it. (Kim: yeah). We‘ve tried, we‘ve gotten
him to taste yogurt, taste ice-cream and he‘s really funny, he will
only, he‘ll like stick out his tongue like a little wand and just barely
touch the tip of it and then he‘s like ―OK, I‘m done.‖ And he‘s really
DONE. (Kim: Yeah) Um so it‘s really our biggest concern still like
even to this day remains feeding.
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Jen has learned to listen to Benjamin partly because he is good at
insisting that she listen. He is not going to eat a food that he has said he
is done with, there‘s no convincing him even with some of the typical
methods used to address food aversions (touching, smelling, tasting etc.)
and so feeding remains their biggest concern.
Social Acceptability and the Ability to Participate in Occupations of
Childhood
The second major occupational impact that focusing merely on the
nutritional status of these children overlooks is that even when children
may be eating foods that meet their nutritional needs, they may not be
doing so in a socially acceptable way. Though there are many, the best
example of this from my data is Benjamin eating only certain colors of
Fruit Loops.
Jen: And then with food, he has this issue about colors with foods.
So a good example is right now he loves fruit loops, but he only
eats the purple, the blue and the green ones. And he leaves all the
red and yellow and orange. He will not…They taste the same! And
he will not eat them. It‘s hilarious, he‘ll go through a whole box
and just pick them out and he‘ll say ―Trash.‖ (Kim; laughs) And
he‘ll go and dump them out.
Fruit Loops is a fortified cereal. When eaten with milk they can actually
provide for many of a child‘s nutritional needs but eating them in this
way is not functional. It takes a great deal of time and frankly looks
funny to pick out half of your cereal to eat. It will not be a functional
skill for school or other public places.
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Melanie experienced another aspect of this problem with Jabari.
Though he wasn‘t choosing food by colors, he does take an extended time
to eat and when he started at a new kindergarten class a month into the
study she found that he was not being given enough time to eat during
the school day. He was having to choose between missing the recess
time that the other children were getting, a crucial opportunity to engage
in free play and socialize with the other children, or slowly eating his
snack during this time. Melanie adapted to this by packing the foods he
could eat most quickly but he still frequently was coming home very
hungry because he had not had adequate time to eat. Melanie was
struggling with whether to try to address this with the IEP team because
she could not see a good solution. Jabari was going to miss some
valuable school time because he was a slow eater or he was going to go
hungry, neither of which seemed like a good solution.
Disruption of Family Mealtime
Another area where the impacts of these children‘s unusual eating
are evident is in the ways that they change family mealtime. Family
meals can look many different ways but they are often a time for families
to come together and be social, to talk about their days and to engage in
important family conversations (Ochs, et al., 1989). They are times when
children learn about relating to food and other people. For several of
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these families, mealtimes have changed significantly due to the special
needs of their child with autism.
The first place they changed was in the cooking and preparing of
food, a core part of the occupations involved with feeding a family.
Rachel reported that she had completely stopped cooking meals for
herself and her older son because the smells from cooking caused her
younger son to vomit. Sofia changed the menu so that she was cooking
foods that produced less odors and was eating with Roberto at a different
time than the rest of the family. Gabi is not trying to create a family
mealtime. Her husband works long hours and Davey eats best when he‘s
distracted.
Gabi: Well, yeah um, we first started out feeding him in front of the
television because he was so scared to eat, that I could get a few
bites of like yogurt in him if he was distracted watching -- he
doesn‘t watch regular television, but Disney sing along songs or
Baby Einstein or something. If he was distracted by that, that
would distract him enough that I could get him to take a few bites
of something. Um, uh, so Davey pretty much has always eaten
separate. Sometimes we put him at the table, but that‘s on those
rare occasions where my husband is home and its -- he‘s having
dinner before ten pm, um, when sometimes Davey and I are
already in bed Davey‘s already in bed definitely. It‘s very rare that
we actually have meal time where all three of us are actually eating
at the same time.
Family mealtime at Jen‘s house has also changed greatly. At one point
she too had given up on family meal time even though it had previously
been a valued occupation for her and her family.
Jen: This has all changed how we eat. So before I used to cook my
husband his own his food and my dad his Mexican food and
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Zachary his plain food and then my food with everything. And
then, what happened was I stopped cooking. I actually got really
depressed, ‗cause it, fun, food was no longer fun, I wasn‘t having a
good time anymore. I didn‘t like eating, and so I wasn‘t, I was just
eating like frozen foods and for them like ―Whatever, figure it out.‖
At this point Jen had been working hard to get Benjamin to eat but was
unable to get him to even come to the table. She was having to cook
different meals for the rest of her family and the stress and strain of it
became too much. She basically called off her family mealtime for a
while. Soon after that she was able to come back to the kitchen and to
the table but it was because she had a new plan. As described further in
Chapter 8 she created a therapeutic interaction that the whole family
had to participate in and made it part of mealtime so that she would not
feel as if she was fighting the battle to get Benjamin to eat alone.
Jen: Um, if we see that he‘s eating particularly really, really, really
well, no one is allowed to get up from the table. Because we don‘t
want to disrupt the eating pattern and I know that sounds
fanatical, but it‘s just some of the things that--, but I think it‘s
also, it‘s worked well for the whole family though. It really makes
everybody just kind of like be part of the family and you know, um,
and I think it‘s helped everybody understand how hard it is to feed
Ben. Like they realize it really has to be a community effort, like
within all of us. Whereas before it was just my husband just relied
on me to do it, ―You do it, you do it, you do it, you do it.‖ And now,
everybody does it. And no one‘s allowed to make faces at the um,
at the food that they‘re served during dinner because it‘ll impact
Ben.
A related issue is being able to go out to eat. Jen also detailed her
family‘s elaborate routine for being able to go out to eat with Benjamin,
something they enjoyed doing frequently before Benjamin began reacting
so negatively to food.
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Jen: So it‘s more about including him in the experience of having
dinner and this is how we eat dinner and when we go out. Even
when we go to restaurants, we know he‘s not going to eat so my
son‘s really crazy about. Everybody gets 30 minutes to eat
because that‘s about his time limit to sit at a table [to sit at a table
and be well behaved.
Kim: Benjamin‘s?
Jen: Uh huh. I mean I‘m not talking, he can throw himself under
the table or he can lay down on the bench and we won‘t mind, we
really don‘t care. Like other people, obviously yeah at Olive
Garden‘s are bothered by our child‘s disruptive behavior but we on
the other hand are thinking ―You‘re crazy. This is a good night.
Mind your own business, drink your wine.‖
Kim: yeah.
Jen: So he‘ll color for a while and then once we hit about the 20
minute marker we‘ll give him the preferred foods and that lasts all
of about five minutes (Kim: Uh huh) and then he says he‘s done so
then we say ―Well if you wait a little bit longer you‘ll get your
special food‖ which is the fruit roll-up. The more sugary one that
of course we shouldn‘t give him and then he‘s like ―For me? Thank
you!‖ And then he‘ll sit another 10 minutes. There‘s the 30
minutes. So at 30 minutes, whoever is going first, it‘s their turn to
do the shift which means you either got to take him and play with
him in the restaurant lobby or courtyard and wait another 15
minutes and then your relief will go out to get you and then you
can come and finish up your dinner and snack or your dessert.
That‘s how, we take turns.
The family has developed strategies that allow them to still engage in this
social occupation that was important to them but it is a lot of additional
work and the experience of being together is obviously changed since
after they reach the thirty minute mark one of them has to take
Benjamin away from the table. This is no guarantee that it will go well.
They have an escape plan on hand for the times when this plan doesn‘t
work.
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Jen: And then if it‘s really bad then we box it and then we go.
Kim: yeah.
Jen: We tend to bring novelty toys so like I always buy matchbox
cars and I carry them in my purse for special
occasions/emergencies.
Kim; Um hm.
Jen: Or Lego‘s. The really tiny ones because they‘ll actually keep
him at the table longer.
Kim: mmm
Jen: And I say ―We‘re all eating. You need to wait until we‘re done
eating then we can all get up and go. (Kim: yeah) And then we can
do something fun together.‖
This occupation that was once fun for them is not fun for Benjamin so
they have to promise a reward that is his kind of fun that they can do
together afterward.
Giving Medicine
Three of the mothers in the study also told of another impact that
their children‘s feeding difficulties had on their ability to mother their
children. These children were all resistive to unfamiliar foods in their
mouths and what is more unfamiliar than medicine? For Melanie, one of
the little victories not featured in Chapter 5 was a time when a therapist
got her son to accept grape flavoring by mouth. This allowed Melanie to
get a liquid medicine into her son. Prior to that time she had been
seeking out suppositories for the different medicines he needed because
these were easier. Gabi also mentioned using suppositories since getting
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medicine into Davey‘s mouth was such a challenge. Giving medicine
isn‘t always a daily occupation but it is an important one in protecting
the health of their children.
Conclusion
Obviously this is an issue that is important for research and
practice. These children‘s feeding issues impact much beyond their
nutritional status and as such, research that focuses only on that is
extremely limited in its usefulness. The mothers in this study were all
self selected as having trouble with eating but it was in no way difficult to
find mothers of children with autism who so identified. All but one of the
children in this study would probably meet their nutritional needs in a
three day food record, but looking at only that aspect of this important
issue would miss an extraordinary amount of important information
about how families lives and ability to participate in their daily
occupations are changed by having a child with autism and feeding
problems.
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Chapter 7: Mothering Children with Autism: Real Stories of
Mothering in the Extreme
“Examining mothering in the extreme affords unique insights. It provides
the opportunity to critically examine taken-for-granted assumptions about
mothering.” (Ledford & Gast, 2006)
―Mothers are not identified by fixed biological or legal relationships
to children but by the work they set out to do.…. Mothers are people who
see children as ―demanding‖ protection, nurturance and training; they
attempt to respond to children‘s demands with care and respect rather
than indifference or assault.‖ (Ruddick, 1995, p. xi) The stories these five
mothers have told me have many moments of intensity. During the
telling they often laughed and sometimes wept. The brief observations of
their interactions with their children left me amazed at their ability to
transition back and forth between attending to their children‘s needs and
telling me their evocative stories. As I looked at all the stories together I
began to see a complex pattern of emotion-based mothering work emerge
that I had not expected. Much of this work was carefully choreographed
by the mothers themselves, each move strategically planned to decrease
the impact of the symptoms of autism on their families, to protect their
children from hardship and to afford all the members of the family as
many opportunities to participate in meaningful occupations as they
possibly could. In reviewing these stories and the available literature on
mothering I found that there were three areas I wanted to address about
mothering. The first is exactly this intensity, mothering these children is
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hard work, work that is not acknowledged in the literature about
mothering or the literature about autism. A subset of the stories about
intensity are what I am calling the exhaustion stories. During several of
the interviews I noted that the mothers seemed exhausted and when I
went back to the data, I found that there were specific stories about this.
Some of them are subtle and some are very direct.
The second section I am going to address is protection. The
mothers in this study engage in acts of mothering that protect their
children. The subtle acts of protecting children from the threats that
autism brings into their lives are profound moments of mothering.
Sometimes these moments are ambiguous and a dilemma of protection
occurs where a mother cannot see how best to protect her child.
Improvisation is the third area I want to concentrate on. The
stories about how these mothers have improvised in their mothering are
striking in that they are often enacted in the moment. These stories
highlight the adaptive processes required to mother these children. This
section also includes a chunk of observational data obtained during one
of the interviews to illustrate some of the improvisational work that one
mother is doing to try to understand her son, a goal commonly identified
in the literature about families priorities with children with autism .
These first person stories are ideal for illumination of what mothering
might be like for these women. As noted in the second chapter these
mothers may not be MD‘s or PhD‘s, but they have children with autism
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and ―this is an experience and an education [they] live and fight for every
day‖ (Riegel, p. 11). They are the experts in these areas.
Intensity
As noted in Chapter 2, mothering of children with special needs is
both prolonged and more intense than typical mothering (Cronin, 2004)
and the experiences related by the mothers in this study certainly were
intense. For mothers of children with autism and feeding difficulties a
huge part of those day-to-day struggles surround food; for being able to
feed your child comes second only to making sure he is breathing in the
work of keeping a child alive (Stern, Bruschweiler-stern, & Freeland,
1998). As Melanie so aptly shapes it, ―It was horrible. It was awful
because I should be able to get my child to eat and it‘s that whole, in my
family it‘s that [uses exaggerated accented voice] ‗Oh you‘re getting
skinny and not enough stuff, not enough meat, on your bones!‘ type of
mentality you know?‖ Her internalized valuing of ―having enough meat
on your bones‖ as being a sign of health makes her inability to get him to
eat a direct affront to her ability to keep her child healthy, to keep him
alive.
The intensity of this mothering can be seen in several types of
stories in these interviews. The rich detail and descriptions of everyday
life that these mothers tell often have an aspect of heaviness, of the
emotional weight of this work and the sheer volume of it. Some literature
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suggests that mothers of children with ASD are more likely than mothers
of typically developing children to display symptoms of depression
(Abbeduto, et al., 2004) and that more hours of maternal involvement in
one specific type of therapy for autism increased levels of maternal
personal strain (Schwichtenberg & Poehlmann, 2007).
One place this stands out in the interviews is the stories about the
intensity of their schedules and the driving they do. All of the mothers in
this study reported that their children received multiple hours of therapy
inside and outside their homes each week. In addition, these mothers‘
schedules often included their own professional work, caring for their
other children and dealing with parents‘ and spouses‘ needs. Since
feeding therapy is an area of professional specialization, there are limited
options for where to get these services and several of these parents were
going significantly out of their way to assure that their children got the
best available treatment. This often led to these mothers driving
significant distances. Melanie reported that at one point she was putting
1,000 miles a week on her car and on some days leaving the house at
quarter to seven in the morning and ending their last therapy
appointment an hour away from their home at seven in the evening. She
knew at the time that it was ―crazy,‖ but her family needed the income of
her working and she was determined to get the services for Jabari that
she thought were necessary.
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Rachel‘s similarly difficult schedule actually led to damage to her
own health and danger to her children. As described in Chapter 4, she
began falling asleep behind the wheel when driving them to their many
appointments. Her eventual diagnosis of chronic fatigue syndrome came
with a suggestion from the doctor that he might have to take away her
driver‘s license. Luckily her feeding therapist was able to accommodate
her by moving feeding therapy into their home. Jen ended up giving up
her outside work due to the strain it was placing on her and her family.
Her schedule included not only the hours of therapy but also multiple
regular doctor appointments each month and daily chunks of time
devoted to managing Benjamin‘s respiratory needs. She frames the story
as one of her son being too busy but it is a window into how busy she
actually is.
Jen: Because I don‘t know any kid who wakes up at 6:30, is on the
bus at 6:45, no I lie, he‘s up at 6:30, gets dressed by 6:45, waits
for the bus at 7:09, rides for an hour to get to pre-school, does pre-
school all day long, gets on the bus at 1:00 again, doesn‘t get home
until 1:45 then we jump in the car and start the therapy runs.
Whether it‘s…and we have a rigorous schedule. Mondays it‘s OT
from 3-4, Tuesdays it‘s OT from, now it‘s flipped, now it‘s Floortime
from 2-4, feeding group 4:30 -6, Wednesdays Floortime 2-4,
Thursdays is the free day because I have to do stuff. Friday is PT
2-3 and then Floortime 4-6.
Kim: Wow.
Jen: I don‘t, plus on top of seeing the neurologist, the pediatric
pulmonologist, the ENT every three months.
Kim: adds up.
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Jen: And he has asthma so he has to do the inhaler twice a day or
the nebulizer treatment. So I don‘t know any little kid, I don‘t
know, I‘m tired and I‘m not even in there doing the therapy most of
the time.
Jen remarks that she‘s tired even though she‘s not in the therapy
most of the time. This belies the fact that she often is in the therapy and
even when she‘s not, she has to drive Benjamin to the clinic, wait in the
waiting room and negotiate what she has described as often challenging
social interactions with other parents. As noted in Chapter 4, Jen has
strongly embraced the Floortime model which requires that she
concentrate on the emotional development of her son whenever possible.
This means she spends much of the time they‘re not in therapy still
engaged in a therapeutic way of being with her son. On top of all she
reports here, for part of the time during the study she was also working
part-time at an emotionally demanding job. All together, this is draining
both physically and emotionally.
Jen: It really is an uphill battle. Um, and it‘s, and it‘s been a really
difficult one and it‘s lonely because at the end of the day, I‘m the
one who has to be on all the time and I have to use my, that‘s how
I always joke that I‘m imaginationed out. I always have to come up
with a new idea and a new approach on how to keep Benjamin
interested with new foods, how can we introduce new textures,
what activity can we do.
Jen‘s term of being ―imaginationed out‖ is an interesting one that
emphasizes her commitment to engaging in Benjamin‘s world, to joining
him in playful interactions and though this may be a stretch, perhaps
even to imagining a future for herself where the symptoms of autism are
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impacting her family less. There is a cost to being constantly ready to
engage at a playful level, to constantly be engaging in hopeful
imagination and this level of intensity can lead to exhaustion.
Reports of exhaustion are not unique to mothers of children with
autism but the specifics of this exhaustion are rarely explored.
Hanisberg and Ruddick (1999) note that many mothers ―may be
exhausted simply from trying to make a coherent and safe enough child-
world out of the particulars of domestic responsibilities, material
demands, work schedules and personal desires and ambitions‖
(Hanisberg & Ruddick, 1999, p. x). For the mothers in this study, the
material demands and domestic responsibilities are multiplied by the
strain that their children‘s feeding challenges and other symptoms of
autism place on their daily lives. Jen tells a story about Benjamin‘s
Floortime therapist helping her to solicit more help from her husband.
In it, she reveals much about how busy she was and the toll it had taken
on her physically and emotionally.
Jen: And she [the Floortime therapist] made it seem like she was
concerned, and she was. And she said [to Hank, Benjamin‘s
father] ―You know, Jen has been working this whole year part time
at Agency Name and you know she shared with me some of the, a
lot of the problems that she has with her daughter in placement
and then she cares for her father, she‘s got a 17-year-old son with
special needs too who is having some problems in school. Who‘s
not doing well. You‘re traveling a lot. And she‘s just, I don‘t know
if you noticed but she‘s not doing well. She‘s been sick a lot. She‘s
lost a lot of weight. She‘s really stressed out. She‘s really tired.
She‘s just normally in Floortime she‘s really good, she does really
well and lately, lately she‘s just been really tired in Floortime and
she‘s available but she‘s physically exhausted and emotionally
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exhausted. And I wanted to know if there‘s something that I could
do…‖ You know she took it off again Hank, she was brilliant. She
said because do you think that there‘s something that I could do to
help her not feel so tired and overwhelmed by doing OT and PT and
Floortime by herself all the time. And um you know he said ―Well,
I guess, you know maybe if you know. He was trying to throw out
ideas and he said ―Well maybe I can help her out more at home
because um you know she cleans the house and she‘s primarily
responsible for everything that has to do with Benjamin. You
know, she is it. And so she‘s like ―Do you think maybe you could
help her out a little bit at home? Do you think that might help?‖
He‘s like ―Yeah, I think that might help. I think maybe if I just took
the initiative to do things without her asking, I think she‘d like
that.‖ (Kim: laughs) and she was like ―Yeah, let‘s try that.‖
Attention to the level of intensity present in the mothering activities these
mothers engage in is crucial because it highlights how their experiences
have been different from those of mothers of typically developing children
and the way in which this impacts their everyday life.
Protection
Protection stories emerged quickly from this data. As noted in the
second chapter, Ruddick (1995) suggests that a core feature of mothering
is the protective love that mothers feel for their children; ―mothers fight
their babies‘ diseases and soothe their emotions. Nature with its
unpredictable varieties of poisons, diseases, germs, fires, tornadoes,
floods and ‗accidents‘ is often an antagonist whose effects are countered
with various strategies from vaccinations and caps on poisons to tornado
shelters and fire drills‖ (p. 76). Unfortunately there is no known
vaccination, cap, shelter, or drill that can prevent or keep out autism.
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I hypothesize that one reason that protection stories were so often evoked
in the interviews is that autism spectrum disorders are poorly
understood and as evidenced by these mothers‘ stories, the methods of
fighting them are diverse and difficult to understand. The research on
treatment methods is ambiguous at best and there are no simple
answers. Melanie‘s focus on the mental and emotional hardship caused
by not knowing where the problems came from and not knowing what
she could do about them is highlighted in the fourth chapter.
One of the things these mothers felt they had to protect their
children from that would not be present for mothers of typically
developing children was bad intervention. For Jen this meant avoiding a
particular intervention that did not feel ―natural.‖
Jen: The behavior modification just felt so mean. To me. To me it
just felt mean as a mother. Just especially with my son being…it
felt mean. The counting and tallying and tabulating. It wasn‘t, it
just didn‘t feel organic or natural. And so I opted for Floortime.
Parents often must trust their gut instincts.
Dilemmas of Protection
Sometimes these acts of protection are not so clear-cut. In fact
they often leave the mothers feeling as if they have no good choice. The
urge to protection that Ruddick identifies is there, but the actualization
of it creates a complex dilemma.
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For example, Jen chooses another type of intervention from the
one mentioned in the quote above as an act of protection, of course it is
this Floortime intervention that ends up being exhausting for her, leaving
her ―imaginationed out,‖ but still it is not something she would go back
on. Her child‘s well-being is at stake. For Rachel, this means seeking
out the best possible feeding intervention even though it is far from her
home. For Gabi it means not listening to the doctors that recommend
medications that she doesn‘t think are safe. Here she tells about how she
believes a medication for constipation given to her son caused him
serious health problems.
Gabi: Oh God, they all love Miralax, which is absolute poison. I
don‘t know if you know anything about Miralax.
Kim: Not much.
Gabi: Oh, oh, uh, ah, never let anyone take Miralax. And I felt like
I could just put up my own shingle and say ―Hi I‘m a gastroen –
gastroenterologist. Here‘s my bottle of Miralax.‖ It is, it‘s PEG, it‘s
chemically related to -- basically it‘s poison. Chemically it‘s related
to um, antifreeze. It‘s supposedly not supposed to be absorbed by
the body, up to four percent of it is absorbed in a healthy
gastrointestinal tract. How many of these kids have healthy
gastrointestinal tracts? They have total permeability. He‘s got
ulcers you know. So, they tell you ―Use the Miralax, use the
Miralax, use the Miralax‖ and you know you‘re stupid, you go to
the doctor and you think that the doctor should know better
because you‘re paying them all this money and they went to school
and you didn‘t or didn‘t go to medical school. And, yeah after he
was cleaned out and I think it was due to the Miralax. They had to
clean them all the way out to do the um, to do the pill cam and the
colonoscopy and endoscopy with Miralax and we came back we
came back from Texas, came home to California, um, two days
later he was in the hospital with ah, ah life critical CO2 of seven.
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Gabi has decided that in order to protect her son she has to do her own
research on medications and interventions. She spends hours on the
internet researching all things related to his care. This occupation often
leads her into places where the decisions get very difficult. She has come
to believe that she can‘t trust the doctors yet often the purveyors of
alternative options also let her down. For instance she believes that the
Defeat Autism Now (DAN) protocol of supplements will help her son but
the DAN doctor prescribed supplements but didn‘t give Gabi any
suggestions on how to get Davey to take them.
Gabi: When you first go to the DAN doctor she gives you -- you go
out and you spend six hundred dollars or whatever it is, it‘s a lot of
money, on all these fancy vitamins. So, it‘s like, ok this is great I
have a cup worth of powder I have to get into my child every day.
and you know they may be the absolute best vitamins in the entire
world-- they are specifically -- because she does a big dietary essay
on him and says specifically what he‘s deficient in and what he‘s
not and what he needs. So, you have it custom tailored to him. It‘s
perfect. But it‘s perfect on the counter or it‘s perfect in vomit,
because he‘s not actually getting it through his system. He will
either refuse to take it, refuse to eat. If you put it in his food, he
will refuse to eat it. You syringe it down his throat he will um, he
will um, uh, just vomit it back up after you get past the teeth
clenching and the biting and all that.
Here she finds herself in a situation that has no good answers.
She wants to protect her son from harm by giving him supplements to
make up for the things he doesn‘t get in his food yet in order to do so she
would have to do things that hardly seem protective and may not even
work. For Gabi, the urge to protect is there, but the actualization of it
seems impossible.
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One of Sofia‘s protection dilemmas comes from evaluating her
son‘s level of intervention in relation to his exhaustion. If he‘s too
exhausted will he be able to take advantage of any of the services they
are working so hard to provide for him?
Sofia: Because we have to deal with certain behaviors sometimes,
and we say, no. It's hard. So, if we say no, everybody's trying to get
trained. You know, the affect, don't make your face, don't overdo it.
Just trying to see how and right now, these days, Roberto's been
too exhausted. Extremely exhausted. Because I go four days of
therapy out of the week. And I live near in the Fair Hills area. So,
from Bridge Town, I pick her [daughter] up. Then we go over there,
and then we go home. Or from Bridge Town, I go pick her up, go to
East Town, so go back, then go home.
Kim: So, you're driving a lot.
Sofia: Yeah, and he's in there, and he's exhausted. And so the
teacher's like, well maybe you need to cut down a little bit because
he's just overwhelmed. And I'm thinking, what do I do?
Kim: Yeah, that's hard.
Sofia: Because then, you know, you read information, and like, oh,
therapy, intense therapy, intense therapy, intense therapy. But
then, I don't want to overdo it where I'm hurting him instead of
helping him.
This intensity and need for protection is also influenced by the social
impact of having a child with autism (discussed in more detail later in
the chapter), the impact upon the relationship between mother and child
and other family members. The effect on mothers of having a child who
is difficult to parent, who challenges her very ideas of herself as a mother
is profound. As Melanie so eloquently put it,
Other people could get him to eat and I couldn‘t and it‘s just, it‘s
not how it‘s supposed to be. I mean you have in the…I mean for
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me, I had in my head a vision of how motherhood was supposed to
be. You know I‘m gonna wear the apron and have the flowery
dress on and my kids are gonna come in and we‘re all going to be
floating and happy and great and it just wasn‘t like that. Real life
isn‘t like that.
Improvisation
The level of intensity and the drive to protect these children even
when the route to doing so is unclear must be very challenging yet these
mothers do not give up. Faced with these challenges in their day-to-day
lives they improvise. They create new ways of care giving, new types of
routines to meet the unique needs of their situations. The protective
love discussed earlier in the chapter will not let these mothers just sink
into despair though they may be living their lives on the ―edge of it‖
(Iversen, 2006). The cost of true despair, of giving up hope would be too
high. Even at her lowest point, Jen took care of Benjamin‘s needs.
Jen: I had to let things totally go to shit. I really did.
Kim: um hm.
Jen: Like this house is not well right now but it was literally like
horrible! And um, so one of the other things that came with that
was just not doing. I didn‘t do laundry for like two months. I just
didn‘t do it.
Kim: um hm.
Jen: Because I was the only one doing it. I just didn‘t clean. I
didn‘t do anything. I only like took care of Benjamin.
Kim: um hm.
Jen: That‘s all I did.
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Melanie‘s low point came when she realized that she wasn‘t praying, an
omission that in her world is a sign of giving up hope.
Melanie: It‘s always a worry about whether he‘s getting enough to
eat. When we started with um, uh Clinic Two it got a lot better
because I started learning how to get him to eat. So that made my
spirit feel a little bit better. But definitely the time when I, after he
had kind of started eating, he had like yogurt and applesauce and
stuff like that. I, like I told you I was just sitting on the couch and
I was like ―I‘ve given up all hope.‖ I was like, I got to the point
where I wasn‘t even praying about it which like, come on, that‘s
basic you know?
Melanie considers herself ―a praying woman‖ and for her this was a sign
that she‘d come to a low point. She quickly turned it around though.
She set her mind on finishing with feeding therapy and told the OT and
dietician she was working with that she wanted to ―break-up‖ with them.
The use of the words break-up for this act is significant. Melanie
had become very close with these women and suddenly deciding to mark
a time to stop seeing them was an unusual act, an act of improvisation.
Most parents would try to get more therapy. Melanie had fought to get
the feeding therapy she had but at this point she leads the charge to
reduce the services—this is a marked contrast to all the other stories in
my study of parents fighting for more services. My interpretation of it is
that Melanie was improvising here. She felt stuck and the threat of not
coming to feeding therapy anymore re-energized both her and the
therapy team.
Melanie: Where I just, that was, that was a year ago. Where I was
looking at him and I was like I had completely given up hope. It
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wasn‘t even like a big dramatic moment, I was just like ―I‘ve given
up hope.‖
Kim: Yeah.
Melanie: I don‘t know when it happened but at some point I just
accepted OK he was only gonna have pudding and applesauce and
soft food for the rest of his life. That was it. That was all we were
going to do and that should be enough. …
Melanie was at a point of resignation and she suddenly realized that this
was actually not acceptable.
Melanie: … And um…from that moment on I stopped, I stopped
giving up hope. Wait, (laughs) did I do too many double negatives?
I stopped looking at the whole situation as hopeless because it‘s
not. And it wasn‘t.
Kim: Yeah.
Melanie: And my attitude was driving a lot of it. Because, and
Hannah will tell you and Lucy, I was like ―I want to break up with
you guys by Christmas.‖ And that was it. That was the turn-a-
round for me. Because I said, ―I want to be done with you guys.
I‘m tired of this. I‘m done.‖
Kim: Yeah.
Melanie: (claps hands) This is going to be our goal. And it really re-
energized all of us. At least that, that‘s what was told to me. That
it re-energized all of us because it was like ―We want to be done
with you. And that‘s it.‖
Melanie‘s act of improvisation is a success. They are all re-energized and
though they don‘t actually discharge by Christmas, they significantly
reduce services and Jabari makes what can only be described as
exceptionally rapid progress during that time.
Though this is an example of a large improvisation, for these
families, everyday life is full of improvisations. They come in ways of
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playing with a child, of creating mealtimes, of interacting at the most
basic level. Sofia alters the way she feeds her family. She learns to cook
foods that produce little smell so that Roberto will be comfortable at the
dinner table. Rachel stops cooking all together and creates meals out of
fruit and packaged foods for the same reason. Jen and her family create
an entire routine for going out to eat to manage Benjamin‘s inability to
sit with them at the table and Gabi rolls hot dogs in digestive enzymes to
make Davey‘s preferred food fit into her idea of what he should be eating.
Some of these improvisations are the moments that bring hope.
Many of the little victories focused on in the fifth chapter come through
improvisation. Through the children being offered foods in atypical ways
and even the act of celebrating these little things is an improvisation in
and of itself.
Another area of improvisation comes in how these mothers
communicate with their children. Children with autism spectrum
disorders often have unusual ways of connecting to the world of other
people and their mothers have to learn these unusual ways and embrace
these atypical moments. During several of the interviews I was lucky
enough to observe interactions between the mothers and their children
with autism. When I review these observations, I am struck by how
much improvisation seems to be going on in the work that they are doing
to interpret what their child is trying to communicate. For the children
who are verbal this is perhaps a little bit easier but even the verbal
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children in this study have unusual speech patterns and it often seems
as if the mothers are working very hard to figure out what the child
needs and who this child is, a theme found to be very important to
families with children with autism in general (Whitaker, 2002). For the
purposes of this chapter I would like to take a close look at one of these
interactions. This occurred during my second interview with Melanie. I
am going to reproduce it first in its entirety in order to give the reader an
overall sense of the interaction. I will follow this with a detailed analysis
of the pieces of the interaction. Even though this will involve some
repetition, I believe it will allow for a better understanding of the work
involved here and the improvisational nature of Melanie‘s mothering.
To set the scene, we are sitting in Melanie‘s living room. Her
children, 5-year-old boy Jabari and 4-year-old girl Sadio are playing on
the floor with clay. Jabari has a very deep voice for a child his age. He
tends to speak very loudly and without much variation in his volume.
Jabari and Sadio have been playing quietly together for about 20
minutes before they begin to argue and wrestle for a toy. Melanie has
been telling a story about interacting with her husband when she
interrupts herself with the following:
Melanie: Eh, eh, eh, eh eh! Boundaries! I saw people get hurt! Why
don‘t you guys play with your rocket?
Jabari: (yelling) NOOOOOOOO
Melanie: No thank you Mommy.
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Jabari: No thank you Mommy.
Melanie: OK well why don‘t you go ahead and clean up and go
read.
Jabari: NOOOOOOOO
Melanie: What do you want to do? Do you want to go jump on
Mommy and Daddy‘s bed?
Jabari: Noooo. Because we can‘t, you told us.
Melanie: You do.
Jabari: NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO.
Melanie: Jabari! Jabari, come here! (quietly) Come here. Don‘t
shout at Mommy. What do you want to do? Come here.
Jabari: I want, I want Sadio to stop talking.
Sadio: No thank you Mama, no thank you Mama, no thank you
Mama.
Melanie: I just want you and Jabari to play quietly so I can talk to
Miss Kim.
Sadio: No thank you Mama!
Melanie: OK, does anybody want a snack?
Jabari: Yes! Because I need PEANUT BUTTER!
Melanie: Not peanut butter. You can get a different snack.
Jabari: Uhhh….uhhhhh…..uhhhh…..
Sadio: Smileys!
Melanie: Smiley Faces for Sadio. Go ahead Jabari.
Jabari: I don‘t know what snack is.
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Melanie: You can get yogurt, you can have Smiley Face. You can
have another pudding.
Jabari: Uhhhh…PUDDING! Because this is not a, a, aaaaaa….
Melanie: Mommy can I have pudding please?
Jabari: Mommy can I have pudding please?
Melanie: Yes you can have pudding. Go get it and I‘ll open it. OK?
Do you guys want juicy water or water?
Jabari: Juicy water.
Sadio: Juicy water please.
Melanie: OK.
Sadio: Mommy can I have this?
Melanie: You‘re going to have juicy water. Are you going to eat it?
Kim: Hi. (Jabari thrusts toy at Kim and grunts) Oh, thank you.
Jabari: I don‘t want you too.
Kim: You don‘t want what?
Jabari: I don‘t want you to Mommy.
Kim: What?
Jabari: Mommy!
Melanie: Yes Baby?
Jabari: Mommy you made me sad again.
Melanie: I made you sad? How did I make you sad?
Jabari: You made me sad because there‘s sad in my eyes.
Melanie: I made you sad because I made you cry?
Jabari: No that‘s mine.
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Melanie: Oh Jabari, you could have a muffin. Do you want a
muffin instead of pudding?
Jabari: I want a muffin.
Melanie: OK, you can have a muffin baby. Take a muffin from the
plate baby. I forgot we had muffins.
Jabari: Grrrrrrrrrr.
Melanie: Get a muffin from the refrigerator.
Jabari: Muffin. NOOOOO.
Melanie: Jabari, I don‘t like that.
Jabari: SORRRY. SORRY! (grumbles something)
Melanie: I didn‘t hear anybody say ―thank you Mommy.‖
Jabari and Sadio: Thank you Mommy!
Melanie: You‘re welcome sweetie. (Whispers: That‘s what happens
when he‘s hungry!)
The first thing I noticed about this section was how much effort Melanie
puts into making this a successful interaction for Jabari. Though she
won‘t let him have his first choice for snack, she works hard to give him
a choice in what he will have. She stays calm in the face of him yelling at
her and inserts politeness routines that are important to how she sees
her children interacting with the world. She does not let him have the
peanut butter because he has been ―hyperfocusing‖ on it and she is
worried that she will lose it as an option for feeding him if he is allowed
to have it at every meal and snack like he currently wants to. The
interaction starts with Melanie breaking up a fight between the children;
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fight she later attributes to Jabari being hungry. She has expressed a
theory that he gets violent when he needs to eat, yet interestingly she
doesn‘t immediately suggest a snack.
In the first section, Melanie first tries to suggest an alternative play
activity. When Jabari rejects her suggestion with a yell, she gently
suggests a more polite response. During their interactions Melanie often
provides manner words for her children. Politeness routines are
obviously important to her. She has a very formalized view of manners
using ―Miss‖ before teacher and therapist names and even my name
when speaking to the children. Respect for adults is obviously a value
she is working on teaching her children.
Melanie: Eh, eh, eh, eh eh! Boundaries! I saw people get hurt! Why
don‘t you guys play with your rocket?
Jabari: (yelling) NOOOOOOOO
Melanie: No thank you Mommy.
Jabari: No thank you Mommy.
Melanie: OK well why don‘t you go ahead and clean up and go
read.
Jabari: NOOOOOOOO
Melanie: What do you want to do? Do you want to go jump on
Mommy and Daddy‘s bed?
Jabari: Noooo. Because we can‘t, you told us.
Melanie: You do.
Jabari: NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO.
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Here Melanie has suggested a usually forbidden activity. Jabari gets
quite upset by this suggestion. This is possibly linked to the rigid
understanding of rules that he has due to his autism. Some people with
autism tend to interpret rules very literally and have difficulty
understanding when it is alright to break a rule and Jabari seems to fall
into this category. Alternatively, Jabari may just be reacting strongly
because he is actually hungry but is not able to identify or express this.
Melanie: Jabari! Jabari, come here! (quietly) Come here. Don‘t
shout at Mommy. What do you want to do? Come here.
Jabari: I want, I want Sadio to stop talking.
Jabari seems confused at this point as Sadio has not actually been
talking. Perhaps he is still concerned with the argument that initially
sparked this interaction but this is unclear. Sadio, always verbally
prolific, quickly vetoes this as a possibility.
Sadio: No thank you Mama, no thank you Mama, no thank you
Mama.
Melanie: I just want you and Jabari to play quietly so I can talk to
Miss Kim.
Sadio: No thank you Mama!
Melanie is getting nowhere. Her suggestions have all been denied by her
children and she is actually achieving the opposite of her goal here.
She‘s not able to talk to me because this interaction continues to go on.
She finally brings up the possibility of food and Jabari immediately
jumps on it. Due to his quick positive response, it seems likely that he
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has been feeling hungry but was unable to express this need. He is not
always so receptive to food. In earlier interviews when Melanie wanted
him to eat he did so very reluctantly.
Melanie: OK, does anybody want a snack?
Jabari: Yes! Because I need PEANUT BUTTER!
Melanie: Not peanut butter. You can get a different snack.
Jabari: Uhhh….uhhhhh…..uhhhh…..
Sadio: Smileys! [packaged fruit snacks shaped like smiley faces]
Melanie: Smiley Faces for Sadio. Go ahead Jabari.
Jabari: I don‘t know what snack is.
Jabari is unable to transition to another idea once his peanut butter
suggestion was eliminated as a possibility. Food perseveration is a
common challenge for these families. Jabari‘s poignant declaration that
he doesn‘t know what snack is interests me. He seems to actually mean
―I don‘t know what I could have for a snack‖ but this can also be seen as
a window into his seeming lack of ability to identify his own internal
states around eating and the routines of eating that his family engages
in. This difficulty in understanding his internal states is later mirrored
in his comments about feeling sad. According to Melanie, Jabari doesn‘t
ever spontaneously express hunger and for a very long time his
resistance to eating left Melanie working very hard to get him to eat
anything. In Jen‘s story in the fourth chapter we saw how important it
was to her to help Benjamin identify his internal sensations including
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hunger. Melanie does not seem as focused on helping Jabari with this.
She approaches his comment about not knowing what snack is with a
practical list of foods he can have.
Melanie: You can get yogurt, you can have Smiley Face. You can
have another pudding.
Jabari: Uhhhh…PUDDING! Because this is not a, a, aaaaaa….
Melanie: Mommy can I have pudding please?
Jabari: Mommy can I have pudding please?
Interestingly, I am not certain that Jabari is actually interested in having
pudding for his snack. He is obviously frustrated here, stuttering and
repeats the last word of her sentence, a pattern I observed him to do
frequently while I was there. He then dutifully repeats the politeness
routine words that she suggests but then he walks away from her to me
instead of to get the pudding. He is obviously still upset. He is able to
answer a question about what he wants to drink possibly because he did
not have an alternative in mind.
Melanie: Yes you can have pudding. Go get it and I‘ll open it. OK?
Do you guys want juicy water or water?
Jabari: Juicy water.
Sadio: Juicy water please.
Melanie: OK.
Jabari then turns his attention to me across the room. He walks over to
me with a toy and tries to tell me something. At the time I was quite
confused but looking back at the interview I believe he was expressing
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his displeasure that I was taking his mother‘s attention though this too
could be misplaced unhappiness about not getting the snack he wants.
Kim: Hi. (Jabari thrusts toy at me and grunts) Oh, thank you.
Jabari: I don‘t want you too.
Kim: You don‘t want what?
Jabari: I don‘t want you to Mommy.
Kim: What?
Jabari: Mommy!
Melanie: Yes Baby?
Jabari‘s ―Mommy!‖ was actually in answer to my questioning what he
was trying to tell me but Melanie hears it as a request for her attention.
Jabari tries again to express his displeasure, I believe he‘s still upset over
the peanut butter but it could also be due to the interview or just that he
is uncomfortable due to hunger.
Jabari: Mommy you made me sad again.
Melanie: I made you sad? How did I make you sad?
Jabari: You made me sad because there‘s sad in my eyes.
Jabari grasps the physical symptom of the emotion. He can‘t really
express why he‘s sad, but he tells Melanie what he can about his
emotion state. Melanie engages him briefly on this by acknowledging the
physical symptom that Jabari is referring to but she then quickly moves
into offering yet another alternative. She has read that Jabari is still
unhappy and is trying to find a solution that he‘ll find more palatable.
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Melanie: I made you sad because I made you cry?
Jabari: No that‘s mine.
Melanie: Oh Jabari, you could have a muffin. Do you want a
muffin instead of pudding?
Jabari: I want a muffin.
Jabari grabs onto this familiar snack idea, one that he often prefers yet
still he‘s not entirely happy as evidenced by his growl a few lines later.
Melanie though is satisfied by this solution. She feels like he has
accepted the idea of the muffin and reframes his continued grumpiness
as an attribute of his hunger. I think that there is a chance that he has
not been able to communicate what he actually wanted and that this
may be contributing to his continued grumbling.
Melanie: OK, you can have a muffin baby. Take a muffin from the
plate baby. I forgot we had muffins.
Jabari: Grrrrrrrrrr.
Melanie: Get a muffin from the refrigerator.
Jabari: Muffin. NOOOOO.
Melanie falls back on her valuation of politeness routines and respecting
adults here. She lets Jabari know that his yelling refusal is not a choice
she is going to accept. She has given up on making him happy with the
choice.
Melanie: Jabari, I don‘t like that.
Jabari: SORRRY. SORRY! (grumbles something)
Melanie: I didn‘t hear anybody say ―thank you Mommy.‖
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Jabari and Sadio: Thank you Mommy!
Melanie: You‘re welcome sweetie. (Whispers: That‘s what happens
when he‘s hungry!)
Melanie‘s acts of interpretation led her into an improvisational state. She
is trying different solutions and when one doesn‘t work she moves on to
the next. She first tried suggesting alternate activities. She then realized
that he was hungry so she moved into giving him choices of foods to eat.
She was not going to accept his first choice but seems to want to get his
acquiescence to a different snack food. He reluctantly gives it but
continues to exhibit signs of being unhappy. In the ultimate act of
improvisational mothering in this example she shifts her original theory
of making him happy by giving him choices to one where his happiness
(or lack there of) is actually dependent on his internal state of hunger.
This changes her actions. She stops offering him alternative foods even
though he has added an emphatic NO after his acceptance of the muffin
idea. She makes him stick with the muffin and explains to me that I
have just seen an example of ―what happens when he gets hungry.‖
These are profound improvisations in the art of mothering, ones
that Ruddick‘s (1995) theory of maternal thinking fails to adequately
address. As we see in the above example, mealtime is a prime area for
such improvisations. For example, Melanie, Jen and Rachel all provide
their children with multiple opportunities to cook food even though they
may not eat it. Melanie cooks muffins with a variety of ―hidden‖
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ingredients that she has worked on getting Jabari to accept. Gabi is
actually modifying foods to fit into a specified diet and Jen has created
entirely new mealtime routines for her family. The profound
improvisations that make their everyday life possible are noticeably
absent from most available descriptions of mothering. The stories from
my interviews with these five mothers about their experiences of feeding
children with autistic spectrum disorders at mealtime can begin to fill an
important part of this gap. One feature of my data that makes it
particularly useful for studying these improvisations is that since I was
often in these mothers‘ homes with their children present while we were
doing the interviews. During the one to two hour interviews mothers
often paused to engage in their care giving routines with their children.
It was not something I had planned or expected, but I was often able to
observe a feeding interaction. In all but one case I was able to observe a
meal or a snack and this helped to situate the data shared with me in
the interviews and to expand upon my understanding of what this was
like for the mothers and the children.
Mothering and Occupational Science
As noted in the second chapter, mothering is an area that has
presented particular interest to occupational scientists and feeding is a
key aspect of mothering. Within the field of occupational science, there
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has been much written about mothering but little that addressed the
critical occupation of feeding one‘s child.
One of the most interesting aspects of this study for occupational
science is that eating and feeding children are almost universally social
experiences and as such provide us with a window into how occupations
are created and carried out by multiple people. Occupations done by
multiple people have commonly been called co-occupations within the
field of occupational science (Zemke & Clark, 1996). By choosing to
study mothers of children with autism, I hoped to expand the
occupational science knowledge base of what these experiences might
look and feel like and how we as occupational scientists might best
support these families and the professionals working with them.
Co-occupation
An expected finding of this study is that it is full of stories of
occupations done together, occupations done as a family or with just the
mother and the child. These stories can be used to help understand the
meaning of activities done with other people. Within occupational
science, when the social nature of occupation is discussed, the unit of
analysis often centers around two people and the idea of co-occupation
as previously discussed in the second chapter (e.g., the mother infant
dyad in: Dunlea, 1996; Fraits-Hunt & Zemke, 1996).
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The general importance of looking at occupations done together is
central to understanding this data. The idea of co-occupation is useful
in suggesting that often occupation is co-created but I propose that we
must go beyond this. Co-creation is happening in occupations in
broader ways. As noted earlier the specific focus on the dyad does not
reflect the broader social context in which most occupations occur.
Secondly, the word co-occupation evokes something positive and in this
data, there were many joint occupations that did not fit into this positive
sounding concept.
As noted in the second chapter, the focus on the dyad is
problematic because many occupations in fact occur in larger social
settings with multiple actors involved who may or may not be physically
present. Following Lawlor‘s (2003b) lead I am interested in framing my
analysis around ―the child or children, the adult partners in action, the
social world of engagement, and the cultural context. The focus is on
acts and actors, acting in a socially constructed world‖ (p. 425), a larger
frame than that allowed by the idea of co-occupation, and a frame that
more accurately reflects the realities of many of the mealtimes these
mothers told me about.
Mealtime at Jen‘s house is a great example of a place where co-
occupation seems insufficient to capture the important interactions
happening between everyone in the family. Jen herself has worked hard
to get her husband and father invested in the process of feeding
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Benjamin. By the final interview Jen is able to challenge Benjamin to try
some new foods at home, a new occupation for both of them. She has
created a mealtime routine that supports trying new foods and the family
dynamics around eating and working with Benjamin have changed.
Jen: Uh, I think it‘s just, I‘m grateful that um, my husband is
finally on board. …. I know that other people know what a big
piece it is when your partner‘s not on board. And you‘re trying to
do these things, it makes it, it was 10, 10 fold more difficult.
Kim: So in the past, before he was, before Hank was on board
with this, was he, were you--, like if you had brought home the
McNuggets, would he just have said ―Oh let him, let him go?‖
Jen: Yeah.
Kim: Let him watch the movie?
Jen: Yeah, he would just said, ―Just let him, if he doesn‘t want to
eat it, [unintelligible] eat it.
The difference now is that everyone is on board with modifying the
environment to support Benjamin eating. This socially based occupation
could not be done with just the dyad of Jen and Benjamin. Jen has
instituted rules at the table that everyone must eat the same foods and
that there will be no making faces or saying negative things about the
food. This was a particular challenge because Jen‘s husband is a very
picky eater. She used to make separate foods for him but now makes
one meal for the entire family. Here she describes her strategies:
Jen: And my husband‘s like, doesn‘t like chewy textures, doesn‘t
like porridge like textures. Um, which I‘m surprised because he
eats yogurt. And I tell him I don‘t, that makes no sense. You can‘t
have yogurt and not like um, he doesn‘t like soups. Just, and
some, so I tell him, in front of Benjamin, he has to get over his
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eating otherwise, because he‘ll say it ―Like daddy, like daddy.‖ And
so what I do now, actually on purpose, is I make foods that are
challenging and we‘re going to feed Ben and I present them to my
husband and he has to eat them because Ben is there. [Laughs]
And he‘s like ―I really don‘t like my rice like this.‖ I said, ―I know
but we‘re eating in front of Benjamin, so don‘t you really like it?‖
And now he‘s, he‘s eating, but it really is like, even with my
husband, I, I‘ve totally chained some foods, I‘ve done a lot of the
similar--, eggs, if they‘re not bright and yellow, and whisked and
fluffy, he wouldn‘t eat them. I swear to you God and he, nothing,
nothing can touch his food. He has to have the food, so now with
the kids I‘m purposefully making foods that are mixed in, like and
mashed so touching. And so they have no choice but to like figure
it out.
The routine to work on new foods with Benjamin has become part of
their social mealtime routines and as noted in the chapter on Little
Victories, Jen relates this to the importance of Benjamin being able to eat
in future social situations. Jen requires that everyone, even her 75-year-
old father participate in this.
Jen: Um, and then to seek, I think [Hank] saw what a challenge it
is for Benjamin and we said you know, eating is social. And if you
can‘t eat in a social setting, we‘re impacting him. And so, what do
we really need to do? How do we get over this? And so, everybody
eats like um, you know get the six piece nugget and everybody gets
a nugget. And we all have to do the same thing and it‘s so funny to
see a 75 year old man, he‘s like ―Why do I have to touch it?‖ I said
―Just, you got to touch it. Everybody touch it, show me.‖ And then
they get a sticker. ―Okay, everybody smell it. Okay, everybody gets
a sticker, I‘ve got stickers. Alright, now we take a tiny little bite‖
and of course Zachary [older son] swallows like, because he loves
it. My dad‘s like [makes gulping sound], I‘m like ―No, just a bite.
[Laughs] Okay, you don‘t get a sticker.‖ And then, you know, but
everybody has to get, because we want him to see the similarity.
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This engagement of each family member, though clearly led by Jen turns
out to be an important aspect of Benjamin‘s increasing ability to
participate in family mealtime.
Jen describes one specific incident of this new family routine
which resulted in Benjamin trying a new food, a chicken McNugget for
the first time just a few nights before our interview.
Jen: So, um, I rented um, the movie Marley and Me ‗cause he loves
Marley and Me and I said look, I‘ll, he goes I‘ll go to Hollywood
Video right now, but you‘re going to have to eat something. Um,
―okay?‖ ―okay, okay.‖ We went to Hollywood Video, rented, went to
McDonalds, and you think you‘re feeding the kid broccoli or
something [laughs] I mean, it‘s a McNugget for Christ sake. So we
get home and I get, I tell the whole family ―Okay everybody needs
to come to the din table,‖ you know you got everybody like a dollar
menu burger or something. I said we‘re all going to eat together,
but we have to tell Ben that we will not put Marley and Me in till he
bites a chicken McNugget and swallows it. And Benjamin‘s like,
you know he saw the fries, he‘s like ―I can do that.‖ and then he
looks at the chicken and he‘s like ―That‘s not mine, that‘s yours,
it‘s yucky.‖ I‘m like ―No it‘s really good, you‘re going to have some
today.‖ It‘s like, he‘s like ―um, I don‘t want any.‖ I said ―Well then
you can‘t have Marley and Me.‖
And he just lost it like oh my God, bloody murder and I said ―Just
come on, Dude, you can do it. We know you can do it.‖ And I wish I
would have videotaped it. His facial expressions were to die for. It
was like you were feeding him dog food or something, he‘s like
―bleh‖ and so my husband gives him the McNugget and Benjamin
like take, like licks it and he‘s like I‘m done and then we‘re like
―No, no, no, no, you have to bite it.‖ So he bites it and then he gags
and he goes ―huh [gagging noise]‖ and we‘re like ―No, no, no, no.
There‘s four more nuggets to go, we‘re not quitting.‖ Normally I
think in the past, we would have been like ―Okay he‘s gagging,
we‘re done.‖ And this time we‘re like ―No, no, no, no if you want
Marley, I‘ll hit play but you have to bite it.‖ And so this time he
bites it and cheeks it and then he gags it. We‘re like ―Almost,
you‘ve got to bite it and swallow.‖ ―I can‘t do it, I can‘t do it!‖ And
he was just yelling and my dad was laughing and he [Benjamin]
was like ―Hu-uh! [sound to represent throwing up], you know he‘s,
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I— because he‘s so dramatic and this time we pretend to throw up
sometimes so he had all the, the, the--. [And my husband‘s like—
Kim: [The sounds?
Jen: Yeah and [Benjamin‘s] like ―Hu-uh!‖ and [Hank] was like
―You didn‘t even have anything in your mouth,‖ I‘m like ―Dude,
your mouth‘s empty,‖ He‘s like ―Oh.‖ [laughs]. I‘m like
―[unintelligible], Ben,‖ and he‘s like ―okay, okay‖ and he bites it
and finally he swallows it. And then he‘s like ―Water, water!‖ And
I‘m like you know we picked the nugget ‗cause it was crispy and it
was protein, I mean you had like a similar chaining tex--, um, it
was chaining it to the fries and chips. ‗Cause it was so crunchy.
And so I‘m like ―I know you like crunchy and I know they‘re salty
enough for you. I know that you like it, it‘s just you just don‘t want
to eat it and you know what—.‖ So once he finally did that, then
we‘re like ―Okay whoo, he did it!‖ and you know he cried for all of
about 4 minutes, real tears though, just like you were torturing the
kid. I‘m like ―You know, I have come to this conclusion that there
are no kids who need OT‘s in Uganda, okay? It is an American
thing and, and even in Mexico, so you are going to eat, my friend,
you are Mexican.‖ And um, it was a little bit of tough love, but you
know we gave him his fries after and we gave him the Happy Meal
toy that came with it which was Monsters and Aliens, which is a
huge reward and then we watched Marley and Me. And we did a lot
of positive reinforcement, I‘m like ―God, that was a really great job
and I know it was,‖ you know again the Floortime kicks in, I was
like ―I know it was really tough to eat a new food and I know it was
not the same, it was different, but it‘s okay, you know?‖ And, you
know by the end of the night he was fine.
Jen was able to walk Benjamin through this challenging incident. She‘s
able to tell him that ―it‘s different but it‘s okay‖ partly because she
believes it now. She sees that he will be able to make it through this, he
will be ―fine‖ at the end of the night. Part of this difference comes from
the larger social support. This family is working together as a unit, not
just as one pair. Jen has the support of her entire family. The fact that
each of them sits and touches and bites and kisses a McNugget makes
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this a social occupation. They are all engaged in helping Benjamin learn
to eat and none of them could do it alone. Jen is coordinating the whole
affair. She is conducting this social occupation both in the immediate
moment and in the work she‘s done to prepare each actor. This seems to
me to be an unusual act of mothering. Another area where I saw similar
management of a larger social context than the mother-child dyad, an
occupation that was more than just a co-occupation was how each of
these mothers works to coordinate the care for their children. Even
though not all the actors are around a table like Jen‘s family, to create
meaningful change for these children the mothers must bring multiple
actors together around a common goal. Understanding how Jen
facilitates mealtime and Melanie creates a cohesive team of professionals
to work on feeding seem related to me. The skills required to do both are
complex and involve managing relationships and creating specific
opportunities.
The second way in which I want to challenge the concept of co-
occupation is the way in which the word elicits an image of two agents
co-creating a positive experience together. In the data I collected there
were often times when mothers were cajoling and even coercing their
children into participating in a challenging feeding occupation. I‘m not
certain that the term co-occupation can adequately capture this quality
of dragging a child into an occupational experience that these mothers
seemed to be experts at. Often the experience does turn out to be
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positive for the child but these children‘s resistance to trying anything
new and their intense focus on maintaining familiar routines can make
this challenging.
One example of this is Jen‘s story of being in McDonalds and
trying to get Benjamin to eat a chicken McNugget. This story which is
featured in the fifth chapter to illustrate the social risks that these
mothers take in publicly celebrating the seemingly ordinary but actually
extraordinary events in their feeding journeys is also an excellent
example of a child participating with his mother in an occupation that he
doesn‘t really want to be part of. Benjamin doesn‘t even want to touch
the chicken nuggets but Jen is able to convince him to feed them to her,
a step along the way to eating them himself at a later date. The creation
of this occupational opportunity is crucial to Benjamin‘s development as
an independent eater and they are certainly deeply engaged with each
other during this interaction, but the term co-occupation seems to miss
the depth of work that Jen is doing to orchestrate this interaction, to
bring Benjamin to the delicately balanced place where he is exploring
new foods but not having a total melt-down. This act of mothering is one
that Jen has created for Benjamin and her work to bring him in seems to
stand alone from the work he is doing to be part of the interaction.
Mothering these children is a challenging task, but one each of
these mothers does with her own measures of grace and creativity. The
intensity noted above can lead to exhaustion and each of the mothers in
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this story fought to keep going at times. Whitaker (2002) noted that this
is an important area where support is needed for families. The families
in the program he studied found encouragement to keep going at these
difficult times and the provision of hopeful future possible stories to be
extremely valuable. Acknowledging and understanding the important
work these mothers were doing is crucial in knowing how best to support
them.
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Chapter 8: Reflexivity, Clinical Implications and Findings for
Further Exploration
This chapter begins with a section focused on my exploration of my
dual role as a clinician and a researcher and how this position has
impacted how I have approached this study. The second part of the
chapter is devoted to the clinical implications of this work, a section that
is dear to my heart as a researcher and clinician hoping to influence the
practice of those who work with families with similar challenges around
feeding and eating. The third section of this chapter contains several
themes which warrant further study. These were themes that emerged
from the data but that did not rise to the level of a separate chapter at
this time.
Reflexivity
Acting as a clinician researcher: Challenges and benefits. One
of the most interesting parts of this study for me was the chance to
deeply explore my role as a researcher who is also a clinician. As Lawlor
(2003a) notes, ―the central aspects of the research process are
particularly complex in situations in which an occupational therapy
clinician, must develop and enact a researcher stance‖ (p. 29). Since I
had been doing data collection on the Boundary Crossings project, I was
already familiar with some of the challenges that this presents but in
developing my own study, that focused on the issues closest to my own
clinical interests, I found the challenges intensified. Fortunately I also
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found that there were benefits, benefits that I had not necessarily
expected to find.
One of the first challenges came when one of the mothers in the
study recognized me as a clinician she‘d seen where her son got feeding
therapy. I did not recognize her or her child, but she had noticed me in
the hallways. She had already known that I knew the therapist who had
referred her to my study. She started making assumptions about our
shared knowledge and it took the better part of the first interview to
convince her to talk to me ―as if‖ I didn‘t know anything about her son‘s
experience at that clinic or the more general ideas about children with
feeding difficulties. In truth, I was not familiar with the course of her
son‘s therapy but even if I had been, I would have wanted her to tell me
as if I wasn‘t since too often I have found that when people are assuming
shared knowledge there are at minimum subtle details that are different.
These details can significantly change how the story is interpreted.
The second area where this was particularly challenging was for
me to suspend my clinician self‘s tendency to concentrate on the
clinically relevant details. These details are often crucial in working in a
clinical capacity with families but when I slipped into the habit of asking
directly for them I was actually suppressing the narrative possibilities.
Avoiding a purely clinical lens when seeing the children and hearing the
stories that the mothers told is one area that I have had much practice in
on the Boundary Crossings project, but most of these interactions were
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not around feeding and eating which is my area of clinical specialty. The
area that this sometimes became evident in the work I did for this project
was in the questions I asked. Though I worked hard to focus on the
narratives around feeding and eating I sometimes slipped into the
familiar habits from my history of doing clinical assessments for families
similar to these. I would find myself asking for a list of foods that the
child eats or what a child weighs. While these are interesting questions
in their own rights, they did not really facilitate story telling by the
mothers and the kind of knowledge I was looking to develop about these
families for this study. I worked through some of these things in field
notes and was able to come up with alternative questions such as ―Was
there ever a time when you were concerned about his weight?‖ or ―Do
you have a story about a particular food that he eats?‖ that kept me
more on track for the narrative focus of the study and the centering of
mothers experiences. My exploration of this clinical lens also helped me
develop one of the most salient themes of this study which is explored in
the Beyond Picky Eating chapter. Realizing that I was focusing on a
more medicalized outcome (the child‘s nutritional status) than the
mothers were allowed me to better understand how some of the literature
was missing important themes in these families lives. I was then able to
explore these themes more fully with the families creating a richer data
set for the study.
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The third area that this presented challenges for me was in having
to hold myself back from making suggestions to the mothers or trying
little miniature experiments with intervening when the children ate in
front of me. By miniature experiments I mean the little trial and error
ways I use in clinical practice of facilitating a child eating something
such as making suggestions of different ways the child could interact
with the food or playful interactions with the food and the child that I
often would engage in during clinical treatment.
For the suggestions for mothers this was particularly difficult with
Jen and Benjamin because they were in the middle of receiving clinical
treatment and the model of services they were receiving was somewhat
different than what I have used. None of the parents asked me directly
for recommendations but sometimes the urge to ask leading questions or
to recommend certain therapeutic techniques was strong. Part of this is
due to the fact that I do believe in the clinical work that I do. I have
developed an expertise in treating these types of feeding challenges and
feeling as if I have information that might be helpful to person in front of
me but not sharing feels almost as if I were violating some sort of social
norm. I recorded some of my struggles with revealing this knowledge
base within one of my fieldnotes after meeting with Jen.
During the interview again I struggled with not self-identifying as
an occupational therapist, as a feeding therapist. I don‘t know why
it feels like I want to put that out there. I want to, it‘s hard, I feel a
bit like I‘m pretending to not know things that I obviously do and
so I‘m trying to sort of balance out what, what the appropriate way
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to acknowledge some of these things. I want her to explain the
terms, I want her to share with me some of the things and her
understanding of some of the things that I might make
assumptions about due to my professional knowledge, but also I
think it‘s, it almost feels like an ethical responsibility to self-
identify, to let her know that I do know this work intimately. And
that‘s an interesting place to be because why does that feel so
important to me? I guess it‘s partly the authenticity of it. The
sense of you are sharing so much depth about yourself, your
family, your life and it‘s so one sided, I want to make sure that
what I do share is honest and comes from a place of true
disclosure.
I think this discomfort related to the fact that as Lawlor and Mattingly
(2001) noted qualitative research requires that researchers do significant
amounts of relationship work with the participants of the study in order
to insure the credibility of the data. This credibility comes through
creating a relationship space in which informants are able to ―disclose
sensitive information as well as personal beliefs and values which also
may be quite sensitive. The trustworthiness of these data depends highly
on the relationship developed between researcher and informant.‖
(Lawlor & Mattingly, 2001). With these mothers, I was developing a space
in which I hoped they would trust me with some of their most vulnerable
stories about feeding their children and in return I felt I owed them a
certain level of honesty. The informed consent document did list that the
study was being performed as a part of the Division of Occupational
Science and Occupational Therapy but it did not reveal the nature of my
affiliation. I think most of the mothers assumed that I was an OT and
sometimes even directly questioned whether I was familiar with a topic
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they wanted to talk about. I would often answer, ―Yes, but tell it to me
as if I wasn‘t.‖ Jen was the only mother who did not seem to assume my
relationship to OT and feeding and I eventually decided to reveal it to her
when she asked about why I had chosen to do the study. She seemed
mildly surprised but then did not seem to react any differently with me
for the next interviews.
I have strong feelings both positive and negative about some
clinical methods that are used in treating children with feeding problems
and when these methods were brought up I had to work hard not to
reveal my positions related to them. I wrote about these moments in
field notes and made a special point to set aside my negative feelings and
to try to come to understand what these methods were like for the
mother from a neutral perspective. I was surprised when I was able to
suspend my negative bias enough to see how a particular methodology
that I generally disagree with had been extremely beneficial for one
family. As I reviewed the transcripts from the interviews I noted that I‘d
done a good job of staying neutral in my responses to families about
intervention methods that I disagreed with but I was less neutral in my
responses to stories about methods that I like and use in my own
practice. I often responded to these stories with very positive language
like ―that‘s wonderful‖ or ―Great‖, something that happened less
frequently with the other methods. After I noted this about three
quarters of the way through the study I was able to modify it for the
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remaining interviews though I struggled with whether to use positive
responses to the stories about the interventions I disagreed with or to
focus on responding more neutrally to other stories. In the end I tried to
reflect the affect of the mother and to react to the outcomes of the
stories, not the intervention methods used.
There were also benefits to being a clinician/researcher. My
intimate familiarity with working with similar families as a clinician often
gave me insight into what questions might evoke a story. I had some
ideas of areas that I had seen being particularly problematic for families
and since there was such a dearth of literature addressing this topic, I
would not have otherwise been aware of where these potentially rich
areas lay. This foreknowledge also allowed me to use these types of
stories as entry points which I could follow with questions about whether
there were other stories that were different from this.
Secondly I had experience in building relationships with mothers.
As noted in the first chapter, my work on the Boundary Crossings project
had already led me to value mothers‘ stories in my practice and to have
an intense respect for the family experience. My clinical practice had
focused on building strong relationships with families that allowed them
to reveal their stories and share the intimate details related to feeding
and this gave me some familiarity with the process of building the
relationships necessary for this research.
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The third benefit from my status as a clinician researcher came in
my ability to relate to the children. In four of my five cases I was able to
meet and interact briefly with the children while the mother observed. I
suspect that my comfort with their children‘s often unusual behaviors
and my ability to interact with them made the mothers more comfortable
sharing their stories with me. I have spent much time with children with
autism and have developed techniques for engaging with them. Melanie
shared during one interview that she often judged people by how they
interacted with her children and I think this is probably a common
strategy. If I had not had clinical or personal experience interacting with
children with autism this may have been a more difficult area for me to
gain their trust.
Clinical Implications
Little victories. One of the main clinical implications, detailed in
the fifth chapter, is that it is crucial to pay attention to the little things.
Mastering seemingly ordinary daily activities constitutes significant
victories for these families. In the world of feeding therapy this may be
most relevant to writing goals for intervention. Often goals are written
based on weight gain or volume consumed but for the mothers I
interviewed these were not the salient issues. Their children were able to
maintain healthy growth patterns often due to the significant work that
the mothers were doing to ensure they ingested adequate quantities of
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food. The real victories for these mothers came when their child was able
to participate in a typical occupation of childhood around food or when
he was able to eat a priority food for this parent. Priority foods were foods
that fit into the culture of the family, that reinforced the mother‘s ideas of
what good mothering entailed or that made getting that necessary
amount of food into the child easier for the mother. When writing goals
and performing intervention, clinicians are much more likely to be
successful if they are able to tap into these priority foods and help
parents bring their children into participation in the occupations of
childhood.
Listening to stories. Tapping into those priority foods and
important childhood occupations will be easier for clinicians if they are
able to listen to the stories mothers tell. The priorities of these five
mothers were revealed when I elicited stories about times that stood out
in their memories about feeding and eating. If clinicians can
acknowledge the importance of these stories and make times for them to
be told they will have an easier time of helping parents and children be
more successful in mealtime occupations.
The stories these mothers told about therapy that failed were
based around the clinicians not listening to the parents and not
providing time for in-depth back and forth communication between the
clinicians and the mothers. Melanie‘s pudding story failure might not
have happened if she had been part of the session where Jabari ate the
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pudding in the first place. Jen‘s lack of readiness to transition from the
bottle to the cup would have been evident if the therapists working with
Benjamin had listened to how Jen talked about her desire for him to
come to a place of internal readiness. When Rachel talks about the
differences she found at Clinic One her stories focus on how the
clinicians listened. Sofia marks the same thing. Both felt that the
clinicians there believed them because they took the time during the
evaluation to listen.
The work of mothering: Creating teams and managing
children’s emotions. The third major clinical implication of this study is
facilitating an awareness that these mothers are doing amazing amounts
of work. Attending to the volume of their schedules and the weight of the
emotion work that they do both with their children, their families, and all
of the clinicians in their lives is absolutely crucial. As evidenced by the
data in the seventh chapter, all of this work adds up and it can lead to
exhaustion if these mothers do not have adequate support. One way this
support can come is if the mother feels that she is truly part of the
clinical team.
Though not large enough to devote a whole chapter to, one of the
themes that emerged from this research was the satisfaction parents
found in feeling as if they were truly part of a strong intervention team
related to developing their children‘s feeding skills. Three of these
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parents expressed that they felt lucky to have such a great team of
professionals working with their child. Interestingly, though this was
partially luck based--often occurring through finding one practitioner
who was particularly interested in developing a relationship with the
mother and interacting with the other members of the team, it was also a
very active process by these mothers. These mothers were managing
relationships between practitioners and engaging in strategies to make
sure they were communicating about their child. Melanie maintained a
journal that she brought back and forth between Jabari‘s teachers and
therapists. She emailed everyone involved in his care whenever there
were significant changes. She insisted that the practitioners working
with her family communicated with each other and did things to make
sure this was easy for them to do. She realized that taking care of her
relationships with practitioners benefitted her and her son and so
purposefully engaged in work to make this happen. For instance she
would stop and buy a drink for the feeding therapist who had agreed to
stay late for her each week.
Melanie: So, and just also, because I knew that she was staying
later for me, I always really appreciated it. So just as, a side thing,
I would always just bring her like a Coke or a Starbucks. Not
because she dictated it to me, but because I was really appreciative
that I knew she was staying past the time. I knew she was going
that extra mile for us because of my weird, crazy schedule, and I
appreciated it. And it was just a dollar thirty bottle of something,
but it was just my way of saying, "Hey, I appreciate you, I
appreciate that you're doing this," and I think it's just really
important.
252
Melanie‘s little gesture showed the therapist that she valued her time and
her going the extra mile. Making this gesture weekly was going the extra
mile on Melanie‘s part. She was working to maintain a positive
relationship. Jen facilitated her Floortime therapist visiting her feeding
therapist and found ways to engage deeply with her feeding therapist
even though she was discouraged from being part of those sessions. She
drew her husband and older children into the therapeutic activities and
directed their actions at meals in order to best help Benjamin be
successful.
Implications for Further Research
Parents as picky eaters. Another interesting finding in this data
was that in each of the four families where I was able to explore this
issue, one of the parents was a picky eater as a child. Though the
sample size is much too small to make any sort of generalized claim on
this issue, it warrants further exploration. This may hold some bearing
on the question of why some children with autism seem to have extreme
difficulties while others do not. I can speculate that there might have
been a tendency toward picky eating in the family that is magnified by
the symptoms of autism. Picky eating is known to be genetically linked
and it‘s been reported that up to 80% of taste preferences pass from
parent to child (Wardle & Cooke, 2008). I‘d like to hypothesize that part
of why we see some kids with autism with more significant feeding
253
problems than others could be due to this genetic link. Maybe it‘s an
alternate manifestation of something that they would have had anyway.
Without autism they would have been picky eaters, but then the autism
which adds the rigidity and the focus on ritualization around food gives
that pickiness more extreme consequences.
Interestingly there does not seem to be any exploration of this
possibility in the literature. There is literature about the heritability of
picky eating in general with typically developing children and even some
literature on how this might be passed socially from parent to typically
developing child (Birch, 1999) but there does not seem to be any
exploration of this possibility in the autism literature. This may indicate
that this is unique finding of this study or it may be a function of no
other work that explored feeding issues in this kind of depth has been
done with parents of children with autism. Interestingly, one of the
mothers did not initially identify as a picky eater but as she told me
stories about her childhood eating she came to realize that she had in
fact been very picky about food. As she put it, ―So I guess he does get it
from me. Now that I think about it, I suck at eating apparently (both
laughing) and I have a lot of issues! Yeah I hate melon because of the
way it feels. Yeah, huh?!‖ Perhaps this has escaped the notice of
researchers because most adults have made accommodations to their
food preferences. They are not concerned about their own eating and
may not self-identify as a picky eater without more in depth discussion.
254
Diagnostic fluidity. An important implication for research into
feeding problems in autism comes from the fluidity of the feeding
challenges these mothers faced over the relatively short period that I was
involved in their lives and the fluidity of severity of symptoms of autism
the children exhibited. Over the course of 6-8 months, the children in
the study changed drastically. Now this may have been a fluke, a
strange conflagration of children coming together by coincidence and the
function of the small sample size but it is interesting to think that
change this drastic can happen for even one child in this relatively short
time period. If I expand and look at the changes from the time of
diagnosis the changes are even more significant. As detailed in the
mothering chapter, three of these children moved from being categorized
as severely autistic into what I would clinically judge as displaying mild
autistic symptoms. Benjamin displayed the greatest change in feeding
behaviors by moving from bottle dependent to drinking from a cup and
beginning to try new foods at home, but even Jabari who was no longer
receiving feeding therapy when I started working with the family made
significant improvements. At the first interview he was eating peanut
butter by the bowl-full, a very atypical snack and during the last
interview Melanie told me that he had advanced to eating peanut butter
sandwiches.
This finding is important for research because it brings into
question any study that looks at one static point in these children‘s lives.
255
In the worlds of feeding, judgments are often made about a child‘s eating
based on at most a three day food record. If this amount of fluidity can
happen in so short a time, that three day food record may mean very
little in the bigger picture of this child‘s eating problems.
256
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Wilkinson, Kimberly
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Core Title
Mothers’ perspectives on everyday life with children with autism: Mealtimes explored
School
School of Dentistry
Degree
Doctor of Philosophy
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Occupational Science
Publication Date
11/25/2009
Defense Date
05/11/2009
Publisher
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autism,eating,feeding,mealtime,Mothers,narrative,OAI-PMH Harvest,Occupational Science,Occupational therapy,qualitative
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Dissertation
Rights
Wilkinson, Kimberly
Type
texts
Source
University of Southern California
(contributing entity),
University of Southern California Dissertations and Theses
(collection)
Repository Name
Libraries, University of Southern California
Repository Location
Los Angeles, California
Repository Email
cisadmin@lib.usc.edu
Tags
autism
feeding
mealtime
narrative
qualitative