Susan's Blog

Wednesday, February 8, 2006

The Good Life

It is fifteen minutes before I have to leave for a reading in a library not too far away. I have been reviewing my notes, now old and worn from all the events I’ve had since MPWA came out (Aug. 30). Even though I didn’t want to, I forced myself to delve back into parts of the book that I have not looked at in months. I always think I’m going to be bored with it because I went over those parts so many times while writing and then editing the book, but of course I never am. It is my life, after all. As I told Jay McInerney the other night, when I heard him read from his new wonderful book, The Good Life, my book is most definitely a memoir, and unlike James Frey, there’s no way I could have made all this up!

I have recently divided my book talk into three parts, the stages that my family went through in dealing with autism in our lives. I think is is a good way to think about what we go through in our quest for strength and a good life of our own.

The first stage was what I call wondering and worrying. This included the earliest days of Nat’s babyhood, all the way until he turned three and was diagnosed with a form of autism.

The next stage was anger, grief, and learning. This stretched from the time Nat was three until the time he was 11 and was expelled from his school program. We hit rock bottom as a family, dealing with terrible aggression and less and less understanding of who Nat was.

The third stage was understanding, expansion, and connection. This is from the hardest period when Nat was 11 to where we are now. We now understand that Nat’s “behaviors” are expressions of what he is feeling or trying to articulate. We know that Nat is often trying to be a part of things, to connect with us, but in his own way and on his own terms.

Thinking things this way has given me a sense of where we’ve come from and where we are. It is true that we have let go of certain dreams we had when our first baby was just born. But I think everyone does that over time. Parents cannot apply their vision to their children; it just doesn’t work that way. With something like autism, you find this out earlier than usual.

Our life has settled into more of what I think of as “fairly happy, fairly normal.” We try to get each of our boys into activities, or playdates, or sports, or do family outings and have vacations. Ned and I go out together or with friends or alone. We go out with just Nat, or just Max, or just Ben — or all three. Our lives are not proscribed by autism. Autism is just many of the conditions we live with. Nat is not a handicap to us, nor a burden. He has his limitations, just as we all do. He has trouble using English and thinking of what others may want. He resorts to aggression (rarely but intensely). But how about the rest of us? I am oversensitive, moody, and impulsive. Ned withdraws into his computer and his math. Ben gets angry easily and Max goes quiet.

I am not trivializing the hardship that can be attached to autism, but it would be dishonest for me to say that I feel it very often. Only now and then, when Nat is particularly thorny, or when I see a typically developing boy just his age, do I get a pang, an wish for something I can’t have. Only now and then.

It is a good life, but you have to learn to reach out for what you can.

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