Susan Senator

I have been asked to be a guest speaker at the Massachusetts State House in Boston on Tuesday, as part of Autism Awareness Month. I want to get the Legislature et al., to understand in a deep and personal way just how acutely challenging the whole Post-22 thing is for people with disabilities. I mean getting jobs, getting housing, having the right supports to be independent. This is the thing that keeps me up at night: the question of how best to help Nat live a good life, particularly when Ned and I are no longer around, without it being completely the obligation of my other two sons? I think the state has to do a lot more to help people with disabilities so that they can contribute more fully to society and live worthwhile lives. All it takes are laws, funding, and compliance! Below is what I was considering saying.

Right above my gym is a workshop for mentally disabled adults. When I see them climbing out of their van and walking slowly to start their day, my impulse sometimes is to look away. Maybe a lot of people feel that way. It’s not the kind of thing you really want to think about, the lives of the severely mentally disabled. But I have to think about it, because my severely autistic son is just a few years away from turning twenty-two, the year when going to school ends and adulthood supposedly begins.

I have been wondering about Nat’s future for much longer than I ever expected, from the time he was just a baby who didn’t respond to my overflowing love. I have long been dealing with his limited prospects and with the world’s lack of understanding, from the first doctor who told us that Nat probably would never marry (he was three years old), to the time five years ago when a prominent Children’s Hospital psychologist pronounced him “retarded,” to the blank stares we faced recently at his school when we requested stronger academics for him. We have had to think of our son defensively and strategically, always protecting him from the harsh world while at the same time pushing to get him ready for it somehow.



In my family’s world, independent living is the Promised Land, the dividing line, the measure by which you assess your child’s chances for a decent future. For the last six years, Nat has attended a private school for autism, at my town’s expense. It is a place where the emphasis is on job training -- jobs like copying, watering plants, and stocking shelves. Meals on Wheels. They will do everything they can to make him ready for independent living. When Nat comes home from school, I often work on more of the same: chores, cooking, and self-care. We are on a two-year waiting list for a state grant (the DMR-DOE grant) that will enable us to hire someone to work with him on using the phone, taking the T, and talking to people at the counter in a store.

Just about every weekend my husband Ned takes Nat on a long walk into town, running errands with him.
This is part of our “community training” for Nat. Ned and I believe that we have to keep Nat fluid and flexible out in the world, so that he doesn’t become too routinized – a hazard of autism – and so that his repertoire of experiences keeps growing. Ned often springs the plan on Nat last minute for this very reason.

“Nat,” he’ll say suddenly, “Come with me to the library and CVS. If you’re calm we’ll get a treat.”

“Okay, yes,” is the sweet but odd way Nat always responds, whether he means it or not. Accurate answering is another skill we have to work on with him.

Outside, longlegged Nat lopes ahead and Ned runs to keep up so that together they can handle crossing the street. Recently Ned told me that Nat finally understands about looking at the lights to determine when it is safe to cross. But he was not happy as he told me this wonderful news: “Nat watched the lights change to ‘Walk.’ He was just about to go. It was a good thing I was standing with him because just then a car ran the light. Nat would have been hit if he’d been on his own.”

For nearly Nat’s entire life, we have sweated to teach him things that I used to think every human knows intuitively. Now, I want Nat to be independent like I’ve wanted nothing else, like some parents dream of Harvard. I don’t see Nat in a place like that sheltered workshop above my gym.
But I have to accept that it is a possibility. For some, it will always be a possibility. Because without the supports Nat receives in his school, he may not succeed on his own. We can plan for how he will work. We can spend every weekend trying to keep him flexible and ready to be out in the world. But without the right kind of help when school is finished, how do I make sure he is ready? After all, there will always be that one car that runs the light.