Friday, August 17, 2007

The Long & Winding Road

This was not a banner week . . . I wish I was enjoying having both children home, but I simply cannot say that I am. I think it is because I don’t get any time off – even bathroom visits are rarely un-interrupted.

Monday was the worst. I’m still not feeling very chatty about it, but Thane decided to remind me in the worst possible way that he can’t be trusted. I think what is bothering me more than the fact that he could have died is that I tried to stop him and he gave me that look from when he was first walking – the absolutely beautiful smile over the shoulder followed by total reckless defiance. I am still very sore from trying to rescue him. And I think it hit home in a way that is hard to explain. This is where autism sucks – I know I shouldn’t say things like that, but the truth is that it does. How am I ever going to trust this unpredictable child, and if I make the mistake again, will it work itself out the way this event did?

Afterward I really just felt like I wanted a break. I have wanted one all week. But the reality is that I don’t trust a lot of people with my children, especially Thane. I trust his teachers, but the one day I took him to school this week, I ended up talking to his case manager and then having my car battery die in a parking lot because Braeden had the DVD player on when the car wasn’t running. I was supposed to go to the doctor, but apparently the case manager forgot that I said no . . . and I don’t do well and dismissing the person in front of me.

Of all the people we deal with, the case manager is probably the one I like the least. I think she sees the glass half empty with Thane, maybe totally empty. She always talks about “children with his diagnosis” as opposed to him . . . drives me batty! The therapists and such all seem to have different ideas. It appears that we have our choice of a preschool that is completely children with disabilities – most with speech problems – or possible a couple of places that seem rather like we’d be slumming. I know that sounds awful, but Head Start looks better than these facilities, yet we can’t get into Head Start because we’re over income. The private places either won’t take a child with his diagnosis, or want him to have a one-on-one. I guess I can see him needing a one-on-one, but a good one of those can be hard to find too.

He’s technically two years away from Kindergarten. We are also highly unlikely to even consider public school for him. I don’t tend to “believe in them” for boys to begin with, but add special needs and I really dislike the idea.

It looks like we’ll do five mornings a week at the developmental preschool. He will have occupational and speech therapies there as well, sometimes one-on-one before starting the school day.

Then there is the problem with getting him access to typically developing children. It’s been exactly a year since his diagnosis and the team of evaluators was clear that there should be access to typical peers. I have been asking, trying, etc., with no luck. Activities like the park and story hour just don’t cut it. Many parents also don’t want to “subject their child” to someone like Thane. After all, he might hurt their feelings by refusing to play. I understand on some level, but it does make it hard to find that interaction!

We’ve tried gymnastics and the class gets cancelled. Swimming was suggested. I may consider that – there is a coach-therapist at a country club near Braeden’s school. It needs to be private lessons, though, for his safety and because his immune issues might make him miss more lessons than he can attend (we were out of school on Wednesday with spots and green poop, and out today because of a bloody nose). A creative movement class with his home developmental therapist was suggested by the school DT, but I just don’t think he can abstract and make himself a tree. In fact, I was just noting that the more things change, the more they stay the same on some level. Now that he knows his name is Thane, for example, we can’t call him anything else. I call him peanut, like in that little YouTube video posted earlier this month, and he corrects me. The dog is no longer a dog (with a Brooklyn accent), she’s a Misty. I know all small children are rather concrete, but he seems more rigidly so than most.

I guess we’re looking at trying a low-rent preschool for one or two afternoons a week. I will have to further investigate the worth in doing something like this. I’m shocked that these places seem to be located near cement plants, concrete batch mixers, pavement companies, town wastewater plants, and places that just seem way too toxic for a child who doesn’t detox things well! Maybe the next one I find will be in the same building as a bakery so he could be glutened daily too.

Oh, I can’t forget this in my long ramble here that one of the schools the case manager suggested actually straps children into chairs until they finish a task. The DT told me that they strap the kids around the middle and strap their legs, and then have them sit in that chair until they have made five worms out of Play Doh. She thought it would totally break his spirit and was inappropriate for him. I wish sometimes that the therapists and case manager would discuss these things before bringing them to me as anyone who knows us even slightly would realize we’d never strap our child into a chair, much less force him to touch Play Doh. It has taken over a year for him to bring himself to do anything with gluten-free dough. Early on the sight of it made him vomit. Even though he can do it now, I would never force something that is so unimportant in my mind.

I found out yesterday that the speech therapist isn’t going to be giving therapy at the preschool anymore – it is going to be an education technician who will work under the SLP. I can’t decide if this is good or bad. Thane gets more of his speech success from home. His SLP doesn’t work on the motor-planning issues. Maybe the ed tech would concentrate more on that?

No comments: