I don’t remember how long it took me to abandon this deeply wrong vision of my son and his life. Probably only minutes. We had no choice but to get to work on the future. The trouble was, we’d been in denial; we’d been thinking Jimmy was going to get better. Now that wished-for future was gone. What would we put in its place?
I knew in my bones what Jimmy needed: a happy mother who loved him. Jimmy needed, he deserved, a family as happy as any other child’s. But it wasn’t going to be easy. Early on I came across a study comparing parents of children who were dying to parents of children with autism. The autism parents were more depressed.
I didn’t care. I decided that for us “happy family” meant integrated family: Jimmy would be part of the world. So Jimmy, now 13, a screaming, fighting, running-away kind of boy in his early years, went to restaurants with us, traveled on airplanes, visited our friends. He wasn’t allowed to run wild in these places, which meant we were struggling virtually around the clock. We got better at this, and eventually learned to establish some control more quickly and quietly. But it never got easy.
Jimmy didn’t sleep, either. We would fall into bed exhausted whenever Jimmy was finally able to drop off–as late as 10, 11, 12–and four nights out of seven he would be up again at 3, screaming. We didn’t know why, and he couldn’t tell us.
For Ed and me, happy family meant brothers and sisters, and that was another struggle. And then suddenly I was pregnant with twins. The genetic counselors we’d consulted had told us they’d never seen a family with more than one case of autism, so I thought twins would give us two “neuro-typical” children who could love and support each other as they assumed responsibility for Jimmy after we were gone.
But the counselors were wrong.
We worried about Andrew from birth. Sometime later, after we’d recovered a bit from our second diagnosis, a friend said, “You’re like the Kennedys, only not famous.” “Also not rich,” I said.
So. Two children with autism. My husband and I careered from one calamity to another. There were the assessments, the doctors, the special-ed functionaries… In so many ways, being forced to retrace our steps through the gateways of “special needs” has been the worst of it. Why should Andrew go through this? Why should we?
And yet… and yet, in the midst of all this, we have become the happy family we set out to be. Not long ago Andrew went on a surface-clearing spree, systematically taking all of our family photos, books and lamps from their tables and placing them carefully on the floor. That night Ed and I were relaxing on our big bed together reminiscing. “Remember when Jimmy did that?’’ we said to each other. It was a happy memory.
We have Christopher, too, who seems to have inherited virtually none of his brothers’ quirks. He is a sweet boy, already more sensitive than other 5-year olds. These days it’s possible I worry more about his future than I do Jimmy’s or Andrew’s. I don’t see Christopher crouched in the corner of a state hospital; I see him trapped in the lobby, arguing with bureaucrats about his brothers’ care.
I hope Christopher will discover, after we are gone, how to take all the craziness that is our life and make it into his own kind of life: his own kind of happy life. Because down the road everything will rest on his sturdy little shoulders. We hope he’ll find the way to wear it lightly.
