Rachel Dr. Adams’s story unfolds, the reader gets

Rachel Adams’ memoir, Raising Henry, pursues one mother’s own feelings and actions throughout the first three years of her son’s life. Dr. Adams’s self-reflective memoir depicts her view of the first three years of Henry’s life, during which her family learns to adjust and navigate the medical, educational, and social service systems in pursuit of the best possible care for him. Coincidentally, Dr. Adams, is a tenured literature professor at Columbia University, who focused most of her academic career researching outsiders (or so called “freak shows) that are sensationalized due to their physical deformities. Her narrative offers an alluring glimpse into her shift from an academic focus on disability to the mother of a child with a disability. Along with describing her own life with Henry, Dr. Adams portrays a haunting insight into the historical treatment of children with Down syndrome and the detrimental institutionalization process that until very recently was the standard advice that the Adams family would have received. She eloquently sets her own experiences with Henry onto a backdrop of information regarding disability-related American policies and the consequent effects they have on the families with children with disabilities. Throughout her story, Dr. Adams thoroughly illustrates the grueling and at times frustrating process for securing and organizing early intervention services and the complex process when Henry transitions to the special education system. She is critical of the process and acknowledges the inequities inherent in the system and the challenging situation of trying to receive essential services and at the same time fighting for inclusion. On the other hand, Dr. Adams’s experience and point of view comes from one of extreme privilege living in New York City, and cannot be representative of most parents with children with Down syndrome. Overall, this book illuminates the world of a mother of a child with a disability, and it is captivating, informative, and challenges many of the inherent problematic values around contentious topics like disability policy, prenatal testing, inclusive education, and the medical community.

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Raising Henry chronologically follows Henry’s first three years, but allows breaks for flashbacks to highlight important moments of Henry’s infancy and toddlerhood. As Dr. Adams’s story unfolds, the reader gets quick glimpses into who Henry is and that he is separate from his diagnosis of Down syndrome. Henry is faced with many occupational performance issues that are touched upon throughout this memoir including his challenges with low muscle tone, socialization, cognition, play, literacy, and delayed gross and fine motor skills which affect many of his occupations such as feeding, play, and attending daycare and pre-school. This book caused me to frequently reflect and think about the larger implications of what I was reading; however, for the purpose of this paper, I chose to focus on what I have learned on a personal level and how it will influence my future practice as an occupational therapist.  

Learning from the Client and Family on a Personal Level

Raising Henry evoked many emotions for me on a personal level, particularly because they challenged some of my previously held beliefs and assumptions and really forced me to reflect and question myself while reading. I believe I instantly connected with this book partly because the author’s thoughts and reflection process seemed so familiar to my own. She frequently describes the constant internal back-and-forth struggle between what she knows, how she feels, what the research says, and what her motherly instinct tells her. While my own experience and life circumstances are quite different from the author’s, I did often feel a real connection with her conflicts both with and against societal norms. For example, I remember being placed in an “applied stream” classroom in grade nine based on the way I performed on a standardized test that I received no accommodations for, all because I wanted to be viewed as ‘normal’ and write the test with my peers; however, this almost prevented me from the opportunity of obtaining an Honours degree at university. While my experiences do not even closely compare to those of the Adams’ family, I do connect with the internal struggles Dr. Adams describes, such as when she wants to fight for Henry to be an inclusive classroom when he transitions to pre-school but also wants Henry to be able to obtain necessary services from the special education system, which means he has to perform ‘below average’ on the standardized assessments to even qualify.

I also related to the author’s honesty when she described herself and her family as overachievers, that’s always driven her desire for perfection. Dr. Adams’s expresses how having a child with Down syndrome has compelled her to alter her ideas about academic achievement and perfection, and to explore different methods of appreciating Henry’s abilities and accomplishments. This notion of challenging the value that our society places on intelligence and merit caused me to think of my own situation of managing my learning disability in an academic environment, and in a broader sense, within a society that places so much worth on intellect. While it would have been much easier for me if I had teachers who understood that I learned and processed information differently than most, I also realize that this pushed me to work even harder and surpass other peoples’ low expectations of my abilities. So, while I want to challenge how our society could just equate intelligence with person-hood like Dr. Adams so eloquently does, I am also conflicted on whether these high expectations help push individuals with barriers to strive to achieve more than society expects from us.  



Learning from the Client and Family in Future OT Practice

Out of most of the healthcare professions, I was particularly drawn to occupational therapy because of how often it deviates from and is critical of the medical model of care. Although I certainly understand the need for symptom identification, diagnoses, and treatment, I have always appreciated the more holistic, client-centered approach that OT stems from. Unfortunately, not all healthcare professions can separate the individual from a diagnosis, and certainly not with many of the healthcare professionals that the Adams family unfortunately had to encounter. Throughout the memoir, Dr. Adams walks the reader through countless appalling experiences where she was either made to feel as though her son’s birth was a tragedy that needed to be apologized for, or an illness that needed to be treated and cured. This was shockingly illustrated when Dr. Adams comes to the awful realization that her repeated check-up visits with the paediatric geneticist was just a way for him to exhibit and use Henry as a teaching prop on display for his residents. Reading Dr. Adams’s accounts of her interactions with healthcare professionals has made me realize that the problematic tragedy narrative of disability is still pervasive in our society today. Fortunately, as a future OT I know I will reflect and avoid falling into this troubling mindset when working with my clients; however, now I know how important it is to not just passively refrain from this kind of faulty thinking, but to actively rally against it. I want to take a page out of Rachel Adams’s book and use any and every opportunity to change this damaging impairment-focused mentality by taking the opportunity to educate anyone I encounter that is willing to listen, especially once I begin my role as a healthcare professional working on a team. Additionally, I hope to take this new learning and put it into action with my future work with clients, such as encouraging and teaching parents and clients themselves to self-advocate because in the end, their voices are the most powerful and compelling evidence.

Gaining insight from Dr. Adams’s perspective as a mother to a child with Down syndrome caused me to question the disproportionate value that our society places on a diagnosis. This does make me question why, as OTs, do we always want to know the diagnosis?  While it might predict what a client’s occupational performance issue(s) may be, it also becomes an easy way to quickly assume that it tells us all we need to know about a client, and which can turn into an excuse to lower our expectations and limit their options. Although we are trained to listen to the client and allow the client/family to be the expert of their own lives, this can get muddled and lost if we don’t actively consider that each and every client we work with vary in personality and ability like any other individual.

This reflection process has unequivocally influenced my own identity as a ‘becoming’ OT and has made me think about the kind of occupational therapist I want to be in the future. I know that I want to be the therapist that helps kids like Henry develop to their full potential, but I also want to be the type of therapist that advocates for societal level changes, such as taking the time to educate people about the problematic rhetoric that is so prevalent in our society regarding disability. I believe I made a step towards my goals after reading this memoir because I as a reader constantly felt the need to confront my own understanding and how I engage with disability, and felt challenged to think about the larger implications.