[Originally posted on March 18, 2014 here]
The Anti-Romantic Child: A Story of Unexpected Joy
by Priscilla Gilman
Where to start?
I honestly can’t decide if I loved this book or disliked it. I suppose both.
In this memoir, Gilman tells of her idyllic childhood and the pain that was wrought by her parents’ split when she was ten. Always a pleaser, she spent much of the next couple of decades trying to fulfill the wishes and expectations placed on her by her family and teachers, pursuing a life of academia. Through it all, she pines for the romanticized version of her early childhood and longs to replicate it with children of her own.
When her first child is born, he is different from what she had expected from the beginning: he is “floppy” and not the cuddly child she had envisioned. In fact, he resists most forms of physical contact and in many ways appears an island. As Benj progresses into toddlerhood, he remains distant, he is clumsy and slow to meet gross motor milestones, and is plagued by inexplicable anxieties and tics. At the same time, he begins reading fluently by age two and shows a remarkable capacity for memorization, and an obsession with letters, numbers, and lining up and ordering things.
“Part of what made my dawning realizations about Benj so disconcerting and devastating was that I had thought I knew him so well. After the initial sense of alienation and despite my continued sense of a fundamental difference or distance between us, Benj, with all his quirks, had become utterly familiar to me. There had been no one more familiar to me than my son. I had considered myself totally tuned in to his needs and had accepted him on his own terms. In fact, I had embraced him for what he was, because I still wanted to be the devoted mother of the romantic child I’d imagined; even if (or especially because) the child didn’t match the ideal, my love for him would. But now I wondered: was this acceptance instead based on a ‘fond illusion of my heart’ (Wordsworth, ‘Peele Castle’)? Was it a kind of denial, a refusal to help or even accurately perceive him? To question your grasp of your child is to suffer a great loss.”
Every aspect of Gilman’s life is informed by the poetry of William Wordsworth, of which she is both a student and a professor, and her book is liberally peppered with Wordsworth poetry that acted as both knife and balm to her mother’s heart.
Around the age of two and a half, Benj’s issues become troubling enough that Gilman decides to begin the process of having him evaluated. Certain aspects of her story resonated so strongly with me with regard to my own child who has Down syndrome:
“Now, with the outside world’s judgments and prescriptions infecting our family, with the knowledge that we would have to have him formally evaluated in clinical settings, our peaceful happy private life, a life in which we – not teachers or doctors or therapists – defined his value and his identity, was gone. Benj was still his same sweet self, but my entire sense of him, of our family, of his and our future had changed.”
I could very much relate to that feeling of loss relating to allowing the sterile, clinical world intrude on our family to assess our child and break him down into scores and numbers and deficiencies.
Benj is diagnosed with hyperlexia (which is like the opposite of dyslexia) and a myriad of delays, sensory issues, and obsessive-compulsivity, and so begins his entrance into special schooling and intensive therapies. Indeed, nearly their entire lives seem to be taken up with various therapies for young Benj. Meanwhile, Gilman leaves academia behind and her fairy-tale marriage breaks up, due in large part to a polarization in her and her husband’s feelings about their son’s issues.
Gilman’s prose is beautiful and from the heart; she is a gifted writer and tells her story vividly. I think what I found frustrating – as a parent of a child with special needs myself – was what I perceive as a juxtaposition, or maybe just waffling, between Gilman’s determination to accept her son and value him exactly as he is, rejecting notions of achievement-based valuing of human beings, and a strong sense of ableism and very much wanting to normalize Benj as much as possible, by relentlessly plunging him into therapy after therapy aimed at changing him. Perhaps, however, her summing up of her feelings explains it best:
“Wordsworth has strengthened my commitment to simultaneously helping Benj integrate into society and honoring his differences. Our therapeutic efforts have been, of course, designed to help Benj be more ‘romantic’: more spontaneous, imaginative, intrepid, playful, connected to others. But even while striving so hard to help Benj become more romantic, I always wanted to remember that Benj’s antiromantic traits are valuable and wonderful and an essential part of who he is. They are strengths and gifts. I never want them denigrated or dismissed as ‘splinter skills.’ Both my reading of Wordsworth and my experience with Benj have taught me the danger of the very idea of ‘normalcy.’ I will always resist mightily any orientation or approach that sees Benj as a problem or somehow ‘broken’ rather than as simply and profoundly himself.”
It was perplexing to me that her son never received a formal diagnosis; so much of what she describes seems like autism, but that may admittedly be my own misconceptions and assumptions. I wondered if it was a form of denial on her part, or a manifestation of the ableism I perceived in her. And yet, she explains very eloquently,
“Despite numerous evaluations over the past seven years by developmental pediatricians, psychologists, speech and language therapists, occupational therapists, and psychiatrists, Benj has never received an official label or diagnosis. He clearly has shades of obsessive-compulsive disorder, and could be grouped under the headings of sensory-integration disorder and social-pragmatic language disorder; now, as he gets older, I often describe him as ‘borderline Asperger’s,’ usually as a kind of shorthand when I need to succinctly explain why he’s in a special school. I’ve always been ambivalent about the idea of labels. They’re undeniably useful for securing the much-needed therapies and special services, but I’ve often wondered how a label would be helpful in understanding Benj. Would a label make people more sympathetic to him? Or would it get in the way of appreciating the complex, intricate person Benj is? How much detail, nuance, subtlety do we lose when we slap labels on people, and especially on still-developing kids? Reducing Benj to a label would me the loss of mystery, romance, respect for the idea of identity as something that can never be precisely defined of fully known or mastered.”
But there are children like my own who are born with a recognizable, inescapable diagnosis or label; and so, while I fully appreciate Gilman’s hesitancy at using labels, I can’t help but also recoil a bit at her feeling that labels are reductive. In reality, sometimes they can’t be avoided, for all of their pitfalls.
This is a very different sort of memoir that I’ve read before, generally and pertaining to having a child with special needs, in large part because it is so heavily informed by the author’s passion for literature. Despite my misgivings, it has definitely given me pause to consider how other parents approach disability.