For a long time, I refused to buy any books with the dreaded “A” word in the title (that pesky magical thinking again). Somehow the idea of having them in the house made our suspicions, and then the emerging reality, seem more intense. But the ice had to melt, and eventually I broke down and bought Greenspan’s The Child With Special Needs, and then The Out-Of-Sync Child, desperately trying to understand how our son was like the children described in those books. But he wasn’t, really, not in any clear-cut way, and the whole idea that he might be “on the spectrum” filled us with equal parts dread and confusion.
That didn’t stop me from sidling over to the children’s section in the bookstore from time to time, then furtively paging through Quirky Kids and The Maverick Mind and countless others to see if any struck a chord. But I’d always leave the store empty-handed and a little shaken. Is this really us? Am I missing something? The first memoir I read was Paul Collins’ Not Even Wrong (love him; reading Sixpence House now, which is about reading, not autism), and then Kamran Nazeer’s Send in the Idiots, and then one day, in an effort to find a bit of serenity, Susan Senator’s Making Peace with Autism. Around that time, J. and I started to ease up on the whole is-he-or-isn’t-he debate, and accept that a) if there is a spectrum, he’s on it; b) this is, in J’s words, “current events, not prophecy” and c) none of this changes who my son is: a smart, delightful, funny, loving boy.
What were we resisting? That he was different from other children? No, that was pretty clear. That he has difficulties with speech, and motor planning, and sensory integration, and social situations? No, we got that. That we needed to give him as much therapy as we could reasonably fit into his life–and ours? No, he had a full program of therapies by the time he was two and a half. That we should limit our expectations? That he might never be independent? That he didn’t have empathy? That we should just accept all the received wisdom about what a child with autism spectrum disorder can do and will become? That our life as we knew it was over? No. No. No. No. No. We didn’t, and don’t, accept any of that. He’s given us no reason to; in fact, he’s full of surprises.
So I was delighted to find a link to Ralph Savarese’s LA Times editorial on Mom-NOS’s blog a couple of weeks ago (thanks, Mom!), in which he espouses a joyful, optimistic and, I believe, respectful model for parenting a child with special needs. I was even more delighted to read his book Reasonable People: A Memoir of Autism & Adoption this past week. Let me say this upfront: it is not a book to pick up lightly. It’s about intense commitment: commitment to a child with autism whose biological parents were unable or unwilling to care for him, who had suffered extreme neglect and abuse, who did not speak, and who, with the aid of his adoptive parents’ incredible love and persistence and ingenuity and patience, learns to communicate independently, reflect on his past, participate and excel in school and give us a glimpse–more than a glimpse–into what autism feels like from the inside.
Heroic? Heartwarming? A triumph of the human spirit? I would say yes, actually, but that’s not at all what Savarese is after. Like any thoughtful memoirist, he resists the narcissism inherent in the form, and it gnaws at him throughout the book. He doesn’t want to be praised or idealized. He’s not looking for the easy out. He insists meticulously on detailing his own doubts, faults, frailties through the process of bonding with, adopting and raising his son DJ. He doesn’t shy from political, cultural, psychological, even literary analysis of autism and disability. He wants us to see it all: the anguish, the confusion, the joys, the mistakes, the odd trajectories of progress and regression.
Most stunning about this book is that, through the process of facilitated communication (in which he types his thoughts with some slight physical assistance from his parents), DJ becomes able to express himself and thus tell his own story. Savarese includes many of DJ’s thoughts, poems and school assignments throughout the book, up to and including the final chapter, which is DJ’s work entirely (I did find myself wishing that his wife had had a chapter too). I won’t go into the whole facilitated communication debate here (Savarese covers that in great detail), but I was touched to hear this lovely boy’s voice as he wrestled with the circumstances of his life and of his own identity, finally coming to a kind of peace. In DJ’s words, “Breathing feels great now. Breathing feels kind of like joy.”