President Obama is coming to our area today, weather permitting (snowing again). Aside from the fact that I’ve always wanted to see Air Force One land or take off, I half want to intercept him somehow — I even have visions of getting Michelle’s attention (I don’t even know if she’s going to be with him) — tugging on her skirt like a little girl, begging her to help all the frustrated parents who can’t get help, or must wait months for help for their disabled kids.
Realistically of course I’d get nowhere near either of them, but I can write and I may just send off a couple of letters to each of them – to everyone I can think of – in a desperate, articulate plea to fix this shitty system.
Spoke at length to a mom of twins yesterday – one of the twins attends Widwood and the other is placed in one of the residential education schools we’re looking into. We spoke at length about how she came to her decision to send him there, and how she liked the place very much. She also confirmed my fears about one of the other places we’d been considering (I wish I could name names here but I’m kind of afraid of being sued for libel – not that I’m anyone important or particularly credible, but you never know – the last thing I need is a fucking lawsuit because I said something negative about a particular institution)…
Anyway, this mother said my situation sounded a lot like hers – though her son was placed when he was a little bit older, after smashing through several windows and walls and had become very strong and almost unstoppable in his aggressions. She understood my frustrations and said she was willing to talk to me anytime. From what she told me, I now am seriously considering this place where her son resides; evidently it’s set up in a series of ranch-like homes, has a Temple Grandin-designed hug machine, an indoor pool (which Jonah would LOVE), and has private rooms for students who need them. I definitely want to set up a tour, though they won’t have rooms until spring at least.
I’m grateful to be able to speak to parents in the same situations as ours (or in situations even worse than ours) – it only confirms my desire and conviction to effect some sort of change in the system, despite my miniscule chances of doing so. In the meantime I will be researching, collecting information about HIPAA and other laws, speaking with autism organizations, learning and digging and thinking.
Yesterday Andy kindly picked me up from work; my car had gotten stuck spinning in the snow that morning, and I’d gotten a ride in but had no ride home. Jonah of course was in the car and had requested “train,” so we headed over to the tracks in Voorheesville. We had perfect timing, arriving just as the red lights began flashing and the striped gates were lowering. I turned around in my seat and said “Yay, Jonah! Train!”
After a few train cars had passed, he looked at me with this completely bland expression and announced “all done train!”
I guess we’ve entered a new era of train apathy. Fickle kid.
The Never Normal 