Susan Senator

I spent some time yesterday working on Nat’s future. No, I did not get out my old Tarot cards; I talked to people and did a lot of thinking. I realized one big thing: Nat’s adulthood is going to feel a bit like his early childhood, where there is no one clear path. What we have is a morass of trails in a very large forest. There are half-hidden footpaths that suddenly end; there are some that go a bit longer but we don’t know where the end up. There are guides who come and go, and some know more than others. The only thing that is clear to me is that once again Ned and I are Nat’s main bushwackers here and so we will have to put together our own route for him.

Now that I know this I am not scared. Not scared; angry and energized. I am so very furious that things are in such bad shape for DD/Spectrum adults. I am going to do what I can to kick the sleeping giant of the government, starting with finding out whether I can join Autism Speaks — Yes, that is what I said, Autism Speaks — and get them to 1) get some DD and autism spectrum adults on their board and into their subcommittees and 2) get them to use some of that huge muscle towards autistic adults. If I can’t, I am going to start Autism Works (get it?), with both autistic advisors and people like this guy, who I met at a conference where we were both keynotes (if I can get him). I’m serious. All of you who wrote me can help. I just pray that I don’t lose my drive to the gray maw of depression — but we all know that happens.

In terms of my Natty boy, there are no right or wrong answers here, just like his education. There are only better or worse supports and plans. We have to keep our knowledge of Nat fully wrapped around us, our eyes straight ahead on our vision, while opening up our minds to relevant suggestions. Readers, please excuse all of the histrionic extended metaphors here, I am a manic mother trying to figure out how to make the world work for my son.

I made some calls to people I know affiliated with our library so that I could find out whether any moderate to severely disabled people work there. I learned about the volunteer program there, where high schoolers do various (consistent) tasks to do with sorting books that come in. It seems like Nat could begin there, but he would need a job coach to help, at least to start him off, and a really openminded supervisor. I hope that my town, which is known in these here parts as an extremely liberal, progressive, crunchy, etc., outpost (similar to the People’s Republic of Cambridge, but more reasonable), will be able to rise to Nat’s needs. It is going to take a lot of liaisoning on my part, and perhaps some very convincing columns in the local paper about what we do well here and what needs improvement. I may have to do some shaming, but hopefully not.

It is going to take a tag team approach, Ned and me, just like always, where I get the idea, I make the initial contacts and forge the way, and he picks up when I start to flag.

So first I am going to get volunteering at the library written into his IEP, which is May 1. I am going to visit the library and observe the program and determine what his needs will be to adapt that workplace. Maybe some of my team should come with me.

And that is how we will start building Nat’s skills and resume. With little bridges and little steps and hopefully as few trip-ups and dead ends as possible. My boy is going to work and contribute and feel the satisfaction of a job well done — I know how much he loves that already. And our library will have a dedicated worker like they’ve never seen before. Cute, too!