Thursday, September 24, 2009

Frustration, Revelation, and Everything In Between

So today we had Charlie's second annual Really Big Powwow and man was that a kick in the teeth. Or a punch in the gut. I'll let you decide.

I cleaned for almost two hours before everybody got here. I generally live in a state of filth, but things seemed especially bad, and there were two extra people coming--Charlie's case manager and the evaluator. I wouldn't want them thinking I live in complete squalor, so I scrubbed counter tops and vacuumed and folded laundry in a desperate attempt to make my house look a little more presentable. I think I did OK.

So every single one of Charlie's therapists came to the meeting--that's four therapists, the evaluator, and the case manager. I don't actually have enough room for all those people, but we made it work.
The report was passed out and Charlie is severely behind in everything except social/emotional. Wow, that was a blow. I mean, I know we're behind, but seeing it there in black and white: severely behind over and over again--depressing. Later that day I was telling Charlie's Feldenkrais practitioner about it and she asked, "well, how's he doing compared with a year ago or six months ago?" and I really think that that's the problem with the whole thing. They don't know. They can't tell you if he's improving or not. You can't assess the efficacy of your techniques either. He was behind before and he's behind again--at least part of your brain wonders if the hours of therapy and travel and research are worth it or are you just spinning your wheels. If I could change one thing about Early Intervention, it would be that--I'd like some measure of whether or not he's improved in addition to information on how he compares to other children.
But I'm a big girl. I have this blog where I recount progress. I have videos and pictures. I know that Charlie is improving--these evals are just hard.
And then, after skimming over that fact that my kid is a disaster area, they come to the big discussion: equipment.

Quickly, two major points come up--transportation and sitting. Transportation is taken care of pretty quickly. We're buying a high end regular stroller to get us through the next few years. Charlie is tiny, and can ride in any stroller pretty well, so I see no need to waste insurance company good-will on an adaptive stroller at this point. We're holding out for the big kahuna--some type of power wheelchair.
But then suddenly, and without warning, they throw a dirty bomb in my lap. Charlie's OT and instructor really want him to have a better seating situation. They want complete torso support and a large tray so he can work on things like coloring, puzzles, and eating with a spoon. They want to spend less time holding him up and more time working on new things. I think this is a great idea, but the idea of equipment is fraught with issues. First, no one knows exactly what we want. They know they want something, but overall I'd say that knowledge of equipment is pretty limited in my area. Second, equipment is expensive, so you don't want to buy something that's not a good fit.

This one offers a tray attachment, but it looks huge.

So I google "Special Tomato" because someone somewhere on the Internet has one and I remember the name. Well, that brings up an entire website of adaptive, positional seating--it's like Pandora's box of ugly medical crap. And it is ugly. I swear that if I ever get to the point where I'm making money instead of spending it, I'm going to to do two things: one, start a scholarship fund for parents who want to pursue alternative treatments for their children and two, design some medical fabric that doesn't make me want to barf. I mean, even the stuff that's less ugly is still pretty unattractive. The Special Tomato is actually getting cuter so that's a plus. It comes with a LOT of options, though, and since I don't have a crystal ball, I don't know what a good option would be for us. I know I need a tray--do I want a tall seat or a low one? Do I want a wheeled base? Do I want it to be more portable or more integrated into our home life? THERE ARE TOO MANY OPTIONS! And, of course, there's no way to test it out or even better, to test out multiple options to see what would be best for you. I'm going to makes some calls tomorrow, but my PT didn't know of a place that handled kid's equipment and my Internet search yielded nothing as well. Ahhhh, the south. I'm going to have to make a thousand dollar decision based on some teeny-tiny Internet pictures and manufacturer-provided descriptions.

This one doesn't have a tray but can be put on a regular seat at a table.

So there you go: I've got research to do on seating options. The eval has spurred me on and I'm going to try to integrate reading books into our daily routine a little more. I've got our usual seven appointments a week. I've got ABR hours to get in. I'm still doing research on alternatives to Phenobarb. And, I don't know if you've heard this, but there are only so many hours in the day.