Monday, February 15, 2010

A teen learns to broaden his definition of "normal" through his brother's autism

From the Lives column of The NY Times by Susan Senator, the author of “Making Peace With Autism” and “The Autism Mom’s Survival Guide,” which will be published this spring.

I began dreading my son Max’s college-application proc­ess even before his senior year began last fall. I didn’t want to hear the stories about his ultracompetitive peers or come into contact with their crazed überparents. I wasn’t looking forward to the endless essays, the almost-missed deadlines. But mostly I just felt an amorphous sadness. It’s not that he wasn’t ready to go; it was as if there were something more that I needed to do or say before I could let him.

The feeling that there was more I ought to do for him is very old. A true middle child, Max has always been quietly self-sufficient, not one to make waves in an already complicated family. His older brother, Nat, is severely autistic. His younger brother, Ben, is fiery and intense. Sandwiched between such demanding siblings, Max learned to be unobtrusive and pleasant. Even as a baby, contentment and equanimity was his way. He always seemed to know how to take care of himself — like the time he tumbled down a flight of stairs but then quickly looked up and smiled reassuringly at me as if to say, No problem, Mommy, before crawling away. “No problem” is ever Max’s refrain. But still I worry about him. In a dark corner of my heart, I have always feared that he couldn’t possibly be O.K., because how could he be, with a family like ours?

Over the years I’ve wanted to help Max with so many things, particularly with Nat, to explain it all to him, to take away his pain, as if that were possible. I’ve talked and talked and talked to him, because that is what I do, how I cope. Usually he replies with polite quiet. And more recently, as normal teenage remove and senior-year pressure have kicked in, it has become even harder to know what might really be going on inside his head. I didn’t even realize that he was almost finished writing his college-application essays until he mentioned this in passing one morning when we were driving to school.

“I figured I’d write about Nat,” Max said, as we turned the corner from our driveway. He spoke so matter-of-factly that he might as well have been telling me he needed new socks.

I gripped the wheel and kept my eyes on some trees, noticing that they were still full of leaves even though it was late autumn. I was buying a little time, desperate to say the right thing, to encourage him but not to overwhelm him with all of my emotions. I didn’t want to let on how proud, how happy this made me; just the notion that he wanted to write about it was miraculous to me. He could choose to talk about his filmmaking, the iPhone app he created, his animations, yet here he was going to write about life with Nat. I couldn’t wait to see what he would actually say, but I had to be careful not to make my usual huge deal out of it and cause him to retreat.

“Really?” I said at last, still looking straight ahead. “Why?”

Max shrugged and told me that Nat has had a big influence on his life. “Oh,” I said, as if I’d never thought about this before. “Huh.”

We sat down a day or two later at the kitchen table with his beloved computer, named Eve, and Max’s essay filled the screen. My was heart in my throat, my face a perfect mask of composure, as I started to read.

The essay plunged right into Max’s lifelong embarrassment of Nat. He described how Nat talks to himself, loudly, in odd sentences and in what Max called “gibberish.” He talked about how people stare at Nat, on the beach and on the street, and how he hates it. He talked about how Nat has sometimes hurt him and broken his things.

Nothing came as a surprise, and yet something about the straightforward, honest litany made me feel as if I’d been slammed against a wall. He described everything — leaving nothing out, as far as I could tell — but in such a different way than I would have: without angst, without hand-wringing, without breast-beating or wailing. “Because of Nat,” Max concluded, “I have learned to broaden my definition of normal. As Nat would say, ‘It’s a-different, that’s O.K.’ ”

And just like that, it all slipped into place. Max gets it, even though he has never before said it: this is his brother. This is his life. It is what it is, and it’s O.K. Shrug.

So unlike me. And way ahead.