April 08, 2004

The Boy Who Loved Windows

I recently finished reading The Boy Who Loved Windows, by Patricia Stacey. The book’s subheader says it well: “Opening the heart and mind of a child threatened by autism.” I’ve been debating whether to post my thoughts on the book here or at Hidden Laughter, which is pretty much wall to wall autism talk, though mostly about Damian’s development through and beyond the diagnosis. The separation between the two sites isn’t quite as neat and tidy as I thought I began this blog. So I’ll post it here. It’s a book review, after all. And MT is easy to use. And I’m here.

So. The book. I was looking forward to the read: it’s currently the only parent-written book looking at Floor Time, the therapy we’ve used with Damian. Stacey’s son Walker was severely impaired from birth, his sensory system so hypersensitive he was overloaded by a simple walk around the block or even a well-lit room and his body tone so low he couldn’t sit up on his own at one year. Through intensive intervention, mostly Floor Time and occupational/physical therapy as well as dietary changes, Walker recovered and is now a happy, interactive child mainstreamed and warmly related.

It’s a hell of a story, and extremely well told. Stacey hits all the emotional beats with an honest, self-aware tone, and gives helpful, accurate descriptions of the various therapies. She was obsessed with her son, with helping him progress. She gave of herself until she was wrung out, sacrificing just about everything else in her life. It’s a miracle her marriage survived; it almost didn’t.

As I was reading, I kept thinking, “I couldn’t do that. I couldn’t give that much of myself.” But then I was telling Tiny Coconut about it, and she laughed and said she’d often thought exactly that when reading Damian's story as it unfolded in Hidden Laughter. That she couldn’t have done what we were doing with him. But she probably could have (which she then said). Just as I may well have been able to do what Patricia Stacey did for Walker if Damian had needed it. You don’t know until it’s your child. And then you just do it, whatever you have to, to make things better. To make his brain work.

What I didn’t find in Stacey’s account, which disappointed me, was a sense of familiarity. Because her son was so very different from mine – and different from most children on the spectrum, certainly those on the higher end – I read her account with fascination but not identification. Much the way someone who hasn’t gone through this would read any parent’s book on the subject. An unusual experience for me.

When I read Catherine Maurice’s book, Let Me Hear Your Voice, about “recovering” her two children, I recognized the emotions she described, just as I did here. There I also recognized the pre-treatment child. Not my own but echoes of my own. What I didn’t recognize was the Pavlovian style behavioral intervention, so alien to my own approach. With this book, I had the opposite experience. I found little congruence in Walker’s pre-treatment state but I recognized just about everything in the treatment itself. The particulars were different because Walker had such a different sensory makeup, but Stacey’s overall approach mirrored ours, and in that it was incredibly satisfying to read. This stuff works, you know? Damian is living, breathing proof of that. Now I know Walker is too.

Posted by Tamar at April 8, 2004 10:39 PM