But it's just not that simple.
Last week, as I was reading, I did a lot of thinking about thinking, and especially about what and who makes me think. I realized that I'm usually drawn to like-minded writers - to those who make me think more about things I already think.
But I also recognize that sometimes my best learning - by best thinking - comes as a result of reading things written by people who think very differently from me. Sometimes those different-thinking writers help me appreciate perspectives I'd not considered before, and alter my own perspective; sometimes they make me better able to articulate why I'll continue to think what I've been thinking all along.
That's the spirit with which I tried to approach Strange Son, because it became clear to me almost from the outset of the book that Iversen and I differ in our approaches to parenting a child with autism. As I read, I reminded myself that our boys are very different from each other: Iversen's son Dov is almost entirely nonverbal, and for many years Iversen felt unable to reach him. I reminded myself that Iversen's life, experiences, and parenting journey were undoubtedly different from mine, and that I could not possibly know for certain what I would have done - what my choices would have been - what approaches I might have tried - had Bud been less like Bud and more like Dov.
I could not possibly know.
And yet, I could think.
And what I think is this: I think that no matter who Bud had been when I met him - whether he'd been nonverbal or deaf, whether he'd had seizures or been hyperactive, whether had he been unresponsive or typically developing - no matter who he'd been, I think that at any point at which I felt like I couldn't understand him - at any point at which his behavior seemed frightening - at any point at which I felt out of my element - my first instinct would have been to spend more time trying to engage with him, trying to understand him, and trying to let him know I was there - for him, and with him.
Unlike Dov, Bud is verbal and visibly engaged with the world, but I think - I believe, though I can't know - that if he wasn't, I would have had the same philosophy. If Bud spent his days staring past me, not responding, watching dust mites in a sunbeam, I believe that - for a while, anyway - you'd find me sitting next to him, feeling the warmth he felt, watching the patterns he saw, and thinking: how can we use this? what can we do next? what can we do here together?
Iversen took a different approach, and in the first half of Strange Son she outlines the journey she took in the years immediately following Dov's diagnosis, as she invested herself fully into learning about the science of autism - the biology, the neurology, the genetics - and into raising money and recruiting researchers. Together with her husband she founded the Cure Autism Now foundation, sponsoring research, fundraising efforts, and national conferences. With the financial support of CAN, she brought Tito Mukhopadhyay, a young man "nonverbal and severely affected by autism" and his mother Soma to the United States from their home in India. Under Soma's direction, and despite his "rocking and flapping and staring ahead as if he (didn't hear) at all," (p. 49) Tito learned to communicate by pointing to letters on an alphabet board, revealing his IQ of 185 and his talent for writing poetry. Iversen lobbied researchers and scientists in the U.S. to raise awareness of Tito and Soma, and to promote research that might make this kind of communication possible for other people with autism.
Iversen's efforts were exhaustive, focused, and intense. She devoted every bit of her time and energy to her work with autism - to the work she did on Dov's behalf. But throughout most of Strange Son, it remained unclear to me how much of the work she did was actually with Dov. Dov remained a stranger to me for most of the beginning chapters of the book. Iversen's love for him is palpable; but, so too is her sadness, frustration, and fear. As I read, I got an increasing sense that, despite the long hours and hard work she put into studying, lobbying, and networking around autism, she regarded spending time with Dov just too difficult a task.
In the second half of Strange Son, Dov became a larger presence, as Iversen recounted Soma Mukhopadhyay's work with him, teaching him to use an alphabet board the same way she'd taught Tito. In a short time under Soma's tutelage, Dov was using the board and Iversen discovered through Dov's own words that he had been able to read for years, that he understood everything he heard, that he'd been paying attention to news reports on NPR, and that he was a smart, engaged boy.
I would have imagined that this would read like a moment of triumph - this unveiling of the "real" Dov - this moment in which mother and son could finally connect. And yet, it was one of the most heartbreaking moments in the book, as Iversen realized that her nine-year-old was a stranger to her. She writes, "After all these years, I had a thousand questions to ask him and a million things I wanted to tell him. And yet, I couldn't think of what to say. 'I love you,' I blurted out. My words hung strangely hollow in the interior of the car." (p. 291)
I imagined that the rest of the book would lead to a denouement of lessons learned: the importance of recognizing your child's own unique talents and gifts, the need to savor every moment that you have with your child, the importance of connection. But the lessons never came, and Iversen remained a stranger to me.
As a result, the more I read, the less inclined I was to keep reading. The science that Iversen presented was thought-provoking. Her description of scientific studies about the arousal states of children with autism was fascinating. Tito and Soma's story was interesting. But it was Dov whom I longed to know.
So I kept reading - until, toward the end of the book, Iversen described a presentation by Dov at a CAN annual scientific meeting. He was scheduled to appear with Soma in front of a room full of people to give a demonstration of how he used the alphabet board to communicate. When the presentation began, Dov seemed anxious and tense and pointed out the word "rock." Soma pushed him to name three types of rocks, and his anxiety and anger grew as he growled, pinched, and head-butted Soma, but ultimately typed the words igneous, sedimentary, and metamorphic.
It was an extraordinary achievement, especially given the conditions under which Dov was asked to perform. And yet, Iversen describes her reaction this way:
"I was relieved when it was over and Soma and Dov joined Erika and Tito and they left the room. I rationalized to myself that at least this was a demonstration of how even such an out-of-control, behavioral wreck of a person could still be intelligent." (p. 352)
An "out-of-control, behavioral wreck of a person."
I put the book down, and thought perhaps I was done with it.
A few days later, I returned to it. Perhaps, I thought, the next page would reveal her regret, her learning, and her determination to do better next time.
Instead, I read this:
"The room was emptying out for the morning break when Gino came over to me.
'I found this under the camera tripod,' he said, handing me a rock. 'I think Dov
dropped it on his way up to the stage.' I turned the rock over in my hands. It
was Dov's rock, the one he had been carrying around for days, a security blanket
of sorts. ... I now realize that Dov spelled 'rock' because he had lost his rock
on the way to the stage. He wanted his rock; he needed his rock. But when
Dov spelled 'rock,' Soma pushed him, until he spelled out what she wanted him
I was relieved that Iversen gained this insight - that she recognized Dov's need for local coherence, and understood the loss of local coherence that came with the loss of his rock. I was certain that this knowledge would make her realize that Dov's dysregulation in the demonstration was an understandable reaction to that loss, and did not make him a "behavioral wreck of a person." I scanned the pages ahead, looking for the conversation in which Iversen apologized to Dov for failing to pay attention, for not working harder to understand what he was trying to say, for pushing him to perform in the midst of overwhelming and unreasonable conditions, and for blaming him for his reaction to them.
I hope that the conversation happened in real life. It didn't happen in the book.
At least, I don't think it did. I'm about 25 pages away from the end of Strange Son, but I've finished reading it.
It may be that Dov's story is not really the story that Iversen intended to tell with this book; unfortunately, it was the story I wanted to read. Though the book's subtitle calls it the story of "two mothers and two sons," at its most basic level, Strange Son is a book about one woman's take on autism - one woman who knows a lot about the science of autism. I learned a great deal of information through her writing, and she made me ponder issues I'd never considered before. But, really, I am not particularly drawn to books about the science of autism. I am drawn to parenting memoirs; and, to my mind anyway, at its most basic level, Strange Son is not a parenting memoir.
And so, I've stopped reading just a few chapters from the end of the book. I realize that there may be great insight in these final chapters. There may be a glorious "a-ha" moment ahead. But that will be for another reader to find out.
I'm off to spend time with my son.
3/2/07, 6:00 p.m.
Addendum to Original Post:
In the interest of full disclosure and in response to some commenters who seem to have interpreted this post as an unprovoked attack on Portia Iversen's parenting, I'd like to add this: I received a complimentary copy of Strange Son from Iversen's publicist for my review. I knew when I accepted the book that I would need to post my reaction to it, no matter what that reaction was. I'm certain that both Iversen and her publicist would insist on getting an honest review. Anything less would compromise the integrity of us all.
This post is intended to be a review of Strange Son, and not a commentary on Portia Iversen or her parenting. And among the positive reactions that I had to the book (Iversen presents compelling information about the science and research of autism; Iversen writes with great intellect; Iversen's account of her tireless efforts in promoting autism research is impressive), were less positive reactions (I found some of her language when writing about Dov jarring; though the book promotes itself as the story of "two mothers, two sons," Dov struck me as a supporting player with a minor role for large segments of the book; I would have found the book more engaging if she had written more about her parenting and delved more into her life with Dov.) I've tried to capture all of that in the post above.