Susan Senator

Yesterday I gave a keynote at the Midwest Autism Conference in LaCrosse Wisconsin. It was one of the best conferences I ever attended, full of practical workshops and even more useful books. Some people came from as far away as Des Moines (5 hours), but I hear that out there, they don’t really notice the time spent in cars. I found that while I was in rural New Jersey last weekend for my wonderful amazing nephew’s wonderful amazing bar mitzvah, I was really taken with how much driving my sister has to do in a day just to get anywhere. I would never leave my house if I had to drive so much. One long run just to get to a Chili’s.

But that’s just me. And just me is what they paid to see at the LaCrosse conference. I enjoyed the talk, and the questions and mingling, as I always do. But the thing that gets me is that it’s me on that podium. Because no matter what I say, just being up there and listened to transforms me into Someone Who Knows. And that’s just not really the way it is. I always say, “Some of this talk is about what not to do, so…” it gets a laugh, but it is the truth. So much of my life with Nat has been trial and a great deal of error.

So much of my life with Nat has been about figuring out what he needs and how to ask for it. That is well documented. But there is also a dirty little secret (although I’m sure I’ve probably mentioned it once or a dozen times): I get really lazy and discouraged and sometimes I just want to give up and keep him home with me. Build that apartment in the basement with a kitchenette and hire someone to live with him and take him places for fun. And that person will sometimes not work out and I will get depressed about that and just decide it’s only us, in the end.

Oh, it’s not as bad as that. And it makes me sad to think of his life like that, but then again, it also makes me feel relieved. I could just chuck the entire state and federal system if I did that; one big F Y to the Bureaucratic Nightmare that is Post-22.

But I am sometimes a role model and so I can’t say that, can I? I’m supposed to tell you all that it will be okay. That it’s doable. That if you do this and that and then yell about this or that, someone will listen and eventually do the right thing.

I don’t know if that’s true! I don’t want to sell you all a bill of goods!! I don’t know what I’m doing half the time. It’s all so much guesswork and hoping I didn’t forget something or get it wrong.

Today I just want to keep him home with me, but that feels like prison. There’s got to be something better than that, but what if there isn’t?

And so there is. If you live in the moment, rather than in the long run.

I choose this moment, at my sweetness nephew’s bar mitzvah.