The Happy Family We Set Out To Be

The day Jimmy was diagnosed with autism I foresaw my little boy grown up, 40 or 50 years old, locked in a state hospital, being beaten by a minimum-wage untrained aide, unable to defend himself or to tell anyone what was happening. I thought: I will kill Jimmy and myself. He has no future, and neither do I.

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.