An autoethnography of a neurotypical adoptive mother’s journey through adoption into the world(s) of intellectual variety in the early years of the U.S. Education System

Introduction

Every box was eagerly checked off, except the column marked, “children with special needs.” Already 40, having a child who would need special care and supervision for life without living parents was worrisome. The child would likely need us far beyond the usual age of bridging into adulthood (Burge et al., 2016). As we sat down to read through the materials after each of the foster care training sessions, the limitless construction of our dreams was being deconstructed by a voluminous series of questions about who we were and the type of child we wanted to welcome into our home. It was overwhelming and becoming real very quickly. Many questions were easily answered. Some, like the question about accepting a child with disabilities, were complex and deeply emotional; for parenting lives at the nexus of the intersections of the multiple identities we carry, the complexities of a child’s life and experiences, and the communities in which our lives unfold. It is within the context of these intersections, and the ones that develop as the multiple identities of the children we mother unfold, that the story of my becoming a lesbian mother, lie. While clearly raising this child in our family has been very much a joint venture, this article represents my observations, sentiments, and remembrances only.

This autoethnography, a most personal story, is the tale of who I have become, and the human rights advocate and ally I am learning to be in the disabilities arena, through relationship with my eldest daughter whom we will call Belle. As she has grown from infancy through pre-school, so has my knowledge and skills around the world of disabilities. Through observation on the reactions of the other half of the cultural binary, I have reflected on how the neurotypical world responds to those whose contours differ. A skilled, international human rights advocate, I found myself reacquainted with that same excruciating sense of urgency I felt working with refugees. Now, that sentiment was compounded by a fierce, motherly need to protect and intervene on my daughter’s behalf. I am learning in this new, more intimate domain, an additional set of interpersonal advocacy skills to face the grinding, bureaucratic approaches of the special education world and to work with the people upholding them. Embedded in this account is my own professional struggle to employ highly developed advocacy skills in a personal, community context for a member of my own family. While my daughter “Belle” is mentioned throughout, this story is primarily and ethically about my reflections, and actions and not hers. In that sense, I am the participant, not Belle.

Simply defined, autoethnography is, “the study of the self” (Reed-Danahay, 1997). Methodologically, it has been described as, concomitantly as product and process, combining elements of autobiography and ethnology (Ellis et al., 2011), and as connecting the “personal to the cultural” (Ellis and Bochner, 2000). An “inside-out” approach to research, autoethnography benefits the reader and the academy by unveiling the richness of private world(s) in public spaces.

I chose this method as a medium for critical reflection on my own lived experiences of straddling the dual roles of parent and social worker/advocate. This struggle takes place within the crucible of protecting of my daughter’s human/educational rights, maintaining relationships educators, and discerning, deconstructing, and strategizing around the power relations involved. In doing so, I hope to better understand my own journey and amplify the struggles of many other mothers for social work educators and students. While autoethnography as a nuanced genre remains contested domain, it is evocative and powerful. It can be viewed as a unique double-helix approach to scholarship, methodologically threading itself between critical reflection on the discreet singular experiences of an author and the multiplicities of experiences represented in the literatures of a given discipline. Simultaneously constructing moments of solidarity with the experiences of others, it deconstructs other aspects of an individual’s experiences by contrast with the same literature. Autoethnography lays bare the illusions of universal truths through the portrayal of the complexities of individuals carrying multiple identities interacting with similarly complex individuals in a given socio-historical context (Spry, 2001). Within the social work literature, autoethnography has been explored as a methodology (Jensen-Hart and Williams, 2010; Lietz et al., 2006; Ngunjiri et al., 2010; Riessman and Quinney, 2005; Tolich, 2010; Witkin, 2000, 2008) among others. Sexuality (Trotter et al., 2006), poverty (Krumer-Nevo, 2009), caring for children with learning disabilities (Gant, 2017), and social change (Ellis, 2002) have also been topics of inquiry. In this narrative, a creative autoethnography approach is employed by using a “slice of life” approach to bring to life the joys and challenges involved.

This narrative is written, in part, to help me as an academic and activist, make meaning of these experiences, and to offer a popcorn trail to others who may find themselves in the asymmetrical position of “parent in the education system” on this journey. Autoethnography uses slice of life stories as exemplars of lived experience. Several will be presented in the section below.

Therapists du Jour—The in-home services world

In short order, Physical therapists, occupational therapists, and speech therapists were in and out of our home on a weekly basis. We were now in the in-home services world (Brown et al., 2005). They left lengthy follow through lists in their wake. Retrospectively, I realized that as a social worker, I was often the “knower” about the intimate details of the homes, lives, and affairs of the people whose homes I visited. Now with young therapists in and out of our home, the roles reversed. Now it was our home that was visited and our lives that strangers knew intimate details of. In this rarefied space of deeper knowing, humility, and awareness, I came to know, by analogy, some of the nakedness experienced by those I have served as a social worker.

My inter-professional skills grew, as I worked with and learned about the challenges Belle faced from these young professionals. I peppered each therapist about their underlying conceptualization of Belle’s challenges, their strategies to strengthen her skills, and their goals for her. Underlying all of it was the hope they could provide information on what they felt Belle’s ultimate capacity was. I sought answers to my deeper questions and fears, “Would she progress beyond these challenges? How long would it take”—and at the deepest unspoken level—would she be “okay”? As kind and knowledgeable as they were, there was also great deal of irony in having very young women without children advising us on how to care for Belle. In writing this, I realized how many times as a young professional had I been that young, motherless, social worker.

Along with our alliances with these professionals who carried the authoritative, systemic discourses, there were disagreements. Although tentative and extremely cautious at first, the opening skirmish was over the frequency of speech services. The number of weekly visits was at the discretion of the speech language pathologist (SLP) who provided services. Initially scheduled for once a month, with no real speech progress in sight, it was clear to me that a more intense approach was necessary. Gentle inquiries faded into strong observational comments focused on Belle’s lack of progress. Observations rapidly escalated into quasi hard-nosed discussion, as I engaged the knowing professionals around the progress/frequency calculus of service provision. I worked intensely to maintain a cordial relationship with all the service providers who entered our home. It was exhausting. Belle’s speech services were ultimately increased.

Nonetheless, despite the chaotic impact of the revolving door therapists de jour on our family and work life, and the need for a very clean house, we found ourselves happily mired in the joy of the everydayness of life with a small child. Waking at 5 am when Belle did, getting dressed and having breakfast together, packing her up, and sending her on her way to school began our days. I lived my adult working life with her big blue eyes and her smiling face always in my mind’s eye and my hearts very beat. Our family world revolved around consciously filling our days with language-rich activities to encourage her speech, small and large motor activities to motivate movement, and regular meetings with school staff.

Initially, home efforts focused on building Belle’s physical strength to get her moving. Hundreds of joyful hours were spent on the floor setting up stacking cups just out of Belle’s reach and enticing her to crawl over and knock them down which she did with squeals of laughter. Belle learned to rise to the challenges set before her. We took her to the pool, to the park, on the swings, down the slide and in the grass—all in an effort to have fun together and build the muscle tone that would promote movement.

The types of therapeutic approaches and the amount of co-directed or therapist-directed activity varied greatly among the different and ever-changing therapists as did our progression, competence, and confidence negotiating these relationships. Novak (2011) in exploring parents experience in implementing home programs for children with cerebral palsy distinguishes between “therapist directed home programs” and “partnership programs.” One approach relies on the therapist setting all the major parameters for in-home therapy. The other is a joint, consultative approach between therapists, parents, and the child.

All of the therapists demonstrated carry-over exercises for us to follow through with during the subsequent week. We were left with a long list of “to dos” and the challenge of fitting them in already packed days (McBride and Peterson, 1997). The family schedule revolved around the therapy schedule as we worked jointly to utilize all the resources at our disposal to support Belle’s development. The weekly therapy visits provided the information about our daughter’s emerging abilities and disabilities I craved. “What exactly were the specific challenges she was facing? What were the underlying causes of these issues? How would she progress and over what timetable?” were the cover questions I posed at times. My deepest, unarticulated questions and fears were around whether and how far she could progress. Using a social scientist’s eye, I observed everything soaking up every scrap of information offered. Facing a whole host of unknowns, every resource, every bit of expertise within Belle’s emerging team, was used to learn as much as we could and to fight the queasy ambiguity that fueled our fears in the late-night hours. Lying in bed through the wee hours, I feared for Belle when I would no longer be alive to protect her.

In the transition period between in home therapy and attendance at a school-based program, the legal and emotional limbo of fostering to adoption ramped up considerably. The state moves to terminate parental rights led to legal appeals that went all the way to the State Supreme Court. My heart ached for the birthmother, while my social work mind knew her mothering this child would not be possible. During this excruciating and tenuous juncture for everyone involved, the now familiar refrain of anxiety, uncertainty, and fear seemed to pour out of every cell in my body. This was exacerbated by my deeply held commitment to social justice and the human rights of the biological parents. Although not involved in the legal custody decisions of the state in any way, becoming Belle’s legal parent strengthened my confidence as her advocate. I sensed I would need to use these skills on a regular basis. Throughout the in-home therapy years, we provided therapeutic stability for our daughter through the regular, ongoing transitions as young professionals coming and went as their lives and careers changed level and location. Despite constant changeovers in personnel, Belle’s skills grew. She developed a growing ease and flexibility in working with the transient adults charged with providing therapeutic supports to her development.

In retrospect, taking a page from autoethnographic examinations, I realize I was constantly struggling with an unconscious and unarticulated feeling of powerlessness born of systemic factors I either did not understand or perceived that I could not influence (i.e. constant change-overs in staffing). Simultaneously, I understood the necessity of keeping an even-keel relationship both with the individuals who came to our home and the systems they were a part of. For Belle’s sake, however, this required more nuanced approaches to advocacy than I had used professionally before. Bold assertions based on human rights and social justice used in my international human rights practice gave way, to pressured silence, then yielded to gentle articulation of the need for service changes both I, and the provider, knew were necessary. I worked to keep these negotiations at the provider level and to encourage their advocacy on our Belle’s behalf. After a long and complicated journey, she was released for adoption and legally became our child. At age three, the context of Belle’s therapeutic learning moved from the home to the school.

Strong Social Worker—nascent parent of a child with disabilities—transitioning to the parental boot camp known as early essential education

When Belle entered the highly structured world of early essential education (EEE) at age three, old struggles disappeared and new ones arose. Gone were the revolving door therapy appointments and serial therapists du jour. This new landscape was a microcosm filled with much older, experienced professional women—physical therapists, occupational therapists, speech therapists, and classroom teachers—in the larger ecosystem of a bureaucratic school system serving thousands.

From moment one, I exhaled. Relief from no longer living life holding my breath from fear and anxiety, rushed in. I sensed the strength, stability, and professionalism of the staff. These women were formidable. I began to relax and trust in their expertise and their intentions and no longer felt that we had to hold this responsibility alone. EEE also brought us into contact with other parents to talk to and learn from. Despite differences in diagnoses, teachers and parents understand the terrain and shared the uncertainty and hope I was feeling. Through this reflective writing process, I realized how overwhelming the isolation of home services was. I felt as if I had been leapfrogging back and forth from social worker learning a new role and mother of a small child with disabilities. It was ironic. At the daycare program, she began around 18 months of age, she seemed to do fine. Her abilities took the forefront while the uneven development of her typically developing peers obscured her emerging disabilities. She was perceived then as a quiet, shy, smiley child rather than “different.” The traditional pre-school milieu with typically developing peers was a barometer for Belle’s progress.

The opening salvo on the road to parental advocacy (Wright & Taylor, 2014) arose early on when it became apparent that a school bus was to be the mode of transportation. Three and four-year-old children would be secured in their seats using adult lap belts. I thought they were joking. What if an accident occurred? The lap belt would hold the child in the seat, but would not prevent the side of the child’s body or head from slamming into the metal sidewall of the bus. I tried to reason with school authorities. What about using car seats on the bus? We were told that no other parents had ever complained about it, they had never had an accident, and car seats on buses were against the law. All my fear saw was a swerving bus and Belle’s little head smashing against the unprotected side wall of the bus.

What to do? It is clearly unsafe. On the other hand, I was aware that I did not want to start my relationship with the school district from moment one, fighting. Leaning into my social work background, thinking systemically, I contacted the director of the state transportation agency. When the statute was written contemporary car seats were not yet invented. Nonetheless, a parental choice point loomed, a dilemma all parents of children with special needs face—repeatedly. Do I force the issue to ensure the safety of my child, or do I remain silent for fear of repercussions that I will not be present to witness in a system I barely knew? Which will be more helpful and less harmful for my child, short-term and long-term? I felt immobilized. I realized my socialization as a woman was surfacing the desire to “be nice”, while fighting the recognition that “being nice” was not going to help my child. Upon reflection, I recognize the now familiar, constant companion, of paralyzing fear, as an artifact of parenting in the special education journey. This is a feeling that would follow me closely through the years. I now understand that this was a signpost in my journey towards effective parent advocacy within more intimate, relational environments. This was a moment of stark and sad recognition that I could not assume that the educational system operated to the benefit of the child. I would have to speak out—consistently.

Had I not been a social worker, I might have remained mired in my anger, fear, and resentment, constructing myself as one person fighting a whole system, of really good, kind people—which they were. The challenge parents face is that good teachers are mired in outdated systems, processes, and cultures. By being able to act positively toward the outcomes I deemed vital for our child’s safety, I felt a sense of efficacy and possibility and that feeling diminished the negative emotions.

Entering a new culture—The world of EEE

Despite the inauspicious start, the teaching staff at the EEE pre-school program she attended were wonderful, talented, and committed women. Their expertise and insights supported both the children’s development and the specialized parenting skills necessary for raising a child with disabilities. They provided a morning pre-school program designed to meet each child where they were and work individually with them around goals written into an Individualized Education Plan (IEP). Belle had global delays in multiple areas. Therefore, while she adjusted quickly to the new environment, she initially needed help with every activity on the day’s agenda. Her incredibly cute little classmates had a broad range of physical, emotional, and intellectual challenges. The group was peppered with a few “typically developing children” whose role was to model “age appropriate,” “typical” behavior. Transfixed with admiration for the teachers, we worked to build generative relationships with them and to learn all we could.

In the early years, I struggled with the discipline-specific languages spoken in acronyms during team meetings and regularly faced the challenge of not being part of the language community of the educational system (Reid et al., 2011). Although I was swimming furiously upstream, the advocate in me was not reluctant to stop the process and ask for an interpretation. Belle and I were both novices. We were both students, she of the explicit content-oriented curriculum and I as parent, the implicit curriculum. Upon reflection, I realized that knowing little about the inside workings of the school system, and only slightly more about Belle’s educational trajectory given the challenges she faced, I found myself gratefully taken under wing. The special educators explained what they perceived Belle’s needs were based on assessments and offered the goals they thought appropriate. Having precious little professional knowledge or personal experience in these areas, we readily acceded to their ideas. It was only when issues arose at a right angle to our experiences of Belle that we were aroused from the comfort that comes from confidence in the educated professionals responsible for your child. By and large the path was relatively smooth and Belle continued to grow and develop, as I did as a parent of a child with disabilities.

The constellation of Belle’s developmental challenges, whose scope included but was beyond speech, did not fall neatly into typical diagnostic categories. These puzzles required an ongoing experimental approach to identify effective strategies. Her speech pathologist took on this challenge with a dedication and professionalism that we watched with awe. She delved into the research, consulted other professionals, and continually engaged Belle with new approaches, tested them for outcomes, and began anew—over and over. She worked with her, built a relationship, and carefully observed her in the learning process. Perhaps, most importantly, she pushed her and through this pressure for performance taught Belle that she could work hard and get results. This very talented SLP gave Belle a solid grounding that served her well in the early years of elementary school.

We worked collaboratively to support Belle’s development. I did not find it difficult to yield to the knowledge and expertise of the SLP. Yet, while I did not have substantive knowledge in the field, my experience as a social worker gave me the confidence to ask questions if I was unsure, gently challenge an approach if I disagreed, and of greatest import, suggest possible alternatives. Lacking the disciplinary frames of the educators and therapists, I was not bound in my thinking. This opened up new ways to conceptualize and respond to Belle’s needs. While I asserted my professional status when I felt it benefitted Belle, my goal from moment one was collaboration with the other professionals holding both parent and professional roles. Throughout this period, Belle was nonverbal, working to build strength with toileting, speech, and motor activities. She eagerly engaged in most of the therapeutic activities and seemed to like school. She was physically wiped out by early afternoon every day.

The IEP meetings, federally mandated for each child with disabilities, were a key venue in our education as parents of a child with disabilities. In their review of the early literature, Salembier and Furney (1997) trace the research on parent and student participation in the IEP and transition processes pre-EHA and through the IDEA from 1990 to 1997. Parent participation in the IEP process became a mandated practice with the advent of the Education of the Handicapped Act (EHA) in 1975 and was affirmed in the IDEA in 1990.

I am sure that I was informed of the IEP and the IDEA when Belle turned three and began the EEE program. However, I felt extremely overwhelmed. There was so much new information, new professionals, and new systems to learn. I did not fully comprehend the true meaning or utility of the IEP process until much later on. In retrospect, particularly in those early years, it was difficult to feel like the educational decision-maker I was supposed to be as a parent in the IEP process. This was particularly because so much about my child’s abilities and potential was unclear. It took me time to understand the process, decode the acronyms and vocabulary, and intuit the nonverbal and group behavior of the educational professionals (Foster et al., 1981; Vaughn et al., 1988). I was walking a tightrope, vacillating between trusting the professionals’ opinions and working to see and articulate my daughter’s strengths so we could build on them.

Initially, when Belle was three, despite my education and practice experience as social worker, I was not well positioned to be an equal player in the IEP process (Vaughn et al., 1988) navigating a new set of laws, customs, systems, and vocabulary. I faintly intuited that despite the “collaborate process,” there were sides. It was parents versus school district. This dynamic was only opaquely visible as a neophyte in this new world. Duly given the Parents Rights prior to each and every IEP meeting in the special education process, I perused this document in part wondering why this was necessary, while sensing a vague contextual protective foregrounding of the possible eruption of hostility arising in the process. Truth told, I was so new to the process, and deeply in need of the expertise of educators, that I would have been hard pressed to do anything but agree with the vast majority of the recommendations.

I used these meetings to educate myself, to ask every question I had, and to learn how to collaborate to extend the therapeutic environment to our home. We were deeply involved in developing partnerships and learning as a team to collaborate together to support Belle (Dunst and Dempsey, 2007). When I asked a question, and got a perplexing response, I learned to probe deeper. When this kind of response arose, I realized that I had likely stepped into the quicksand of the teachers’ previous parental battles and learned to re-approach using a different path. The meetings were helpful, and over time became a highly productive venue to share information on Belle’s successes, challenges, and progress (Minnes et al., 2015).

As I observed Belle’s progress, however, I had a lingering sense that there was a kind of invisible, trailing unexplained diagnosis behind the obvious severe apraxia of speech owing to my professional interest in neuroscience. My strategy as a social worker focused on how I could engage the team with research findings to most effectively utilize the new understandings of the plasticity of the brain to its fullest intellectual advantage for Belle. While the research tends to focus on how resolved the parents are regarding the diagnosis (Boström et al., 2010), my focus was on using the plasticity of Belle’s brain to her own developmental advantage. I became increasingly focused on her growing strengths and abilities, the presence of her joy in accomplishment, her desire for friends, and her motivation to please the helping adults in her life.

Conclusion

Although disability studies was not a research focus for me, my love for Belle led me to the research literature and special education colleagues with purpose and focus, Autoethnography, Ellis et al. (2011); Adams and Ellis (2012) gave me the reflexive tools to dwell in these experiences and plumb them for deeper understanding, and the will to share these insights with others. With the hindsight vision of autoethnography, I see now that my learning and confidence increased rapidity as the young professionals in our home regularly moved on to better jobs, new marriages in distant places, and other pursuits. While I trusted the knowledge of these professionals, they were transient. Being the service recipient by proxy caused me to ponder, too, about the many families whose homes I had visited as a young social worker. What had these families thought of a young, childless, me supporting them in the complex and challenging situations they faced?

I realize now as well that my fears for Belle and her future, as well as my grief (Brown, 2016) were driving my quest to get the bottom of her challenges, to get a clear diagnosis. To understand the origin of these neurodevelopmental challenges was the ability to “fix” the problem.” I now understand there is no problem with Belle. There is simply a beautiful girl with big, blue eyes and a sparkling smile with a range of abilities and some areas of challenge who lives in a world whose cultural constructions exclude her (Ellis, 2004). She is simply a child—with disabilities.

Throughout these early years, I frequently faced the confusion of role blurring. Was I in a given moment operating as a social worker or a parent? While I knew I could not obviate any part of myself, I found that foregrounding the privileges of my social work education and academic preparation, while still relying on the specialists’ guidance as arbiters of the disability system was a workable path. As Belle’s mother, I case managed her services and education. By taking a colleagueship approach, the multiple siloes of single-discipline interventions, increasingly found integration coherence. Our home became and remains a 24/7 therapeutic environment. By the initial responses of the interdisciplinary team members, I realized what I had done was rare. I was not in the role of parent supplicant. Tierny (1988) notes that autoethnography is a transgressive voice attempting to move the marginalized, in this case “parent” in the special education service provision, to center.

Belle has been both my teacher and my goad. She has influenced every dimension of my life as well as my teaching, research and service. She has taught me to keep my focus on her emerging developmental strengths and the transformative power of her diligence, determination and hard work.