When I write about the lack of help, especially respite, for Janey, an argument pops up a lot. It's not so much one that anyone has the guts to SAY to me, but one I know people, people outside our autism tribe, might be thinking. It goes like this "Why should you get help with your daughter? I have a kid without any special needs, and nobody is helping ME!"
When I hear this, I laugh. A deep, ironic, non-funny laugh. Because of course the typical child gets help, and of course the typical parent gets respite.
Let's start right in my own neighborhood, in fact, within walking distance of my house. I live in a working-class part of Boston. Not a fancy suburb, just a regular type place. And if Janey had no special needs, here's the respite I could get at low or no costs...
A community center that holds camps during all vacations, for very low prices
A YMCA with camps, Saturday programs and all kinds of activities
A small theater with vacation and summer programs
A summer program to learn tennis
Summer programs at several nearby school, with academics and field trips
Dance classes, with camps
Now, if we open it up to the city at large, there's hundreds, probably thousands, more possibilities. There's the Saturday program I've so often mentioned, for "special needs" kids. Not Janey, because they have to be able to handle a 4 to 1 ratio. There are music programs run by the school district, absolutely free summer programs, all day camps. There are a huge number of programs at community centers. There are nature camps run by the Audubon Society. There are so many choices, choices I could actually afford, that I would have a hard time picking.
And what is there for Janey? There is nothing. She gets summer school, the incredibly shrinking summer school, which becomes less weeks and less days a week each year. She goes to regular school. That is it.
It is an ironic, sad thing that the families most desperately in need of some respite are the same families for which there is none. So don't say for a millisecond that your typical kid doesn't get services, doesn't get help. They do. We live in a society, despite anything anyone might want to think, where Janey is excluded from so very much by her disability.