Thursday, April 5, 2007

What's right?

Things have been conspiring to get me to write about what's right. First of all there was Joel over at NTs are Weird asking what we liked about our auties, then Along The Spectrum wrote a wonderful post ending with:
In the eleven years that have passed since I first asked the question “Will my son be OK?”, I’ve recognized that it wasn’t even the right question to ask. Instead the questions to ask are “Are my kids OK today?” and “Am I doing things to make tomorrow the same or better?”
Very nicely said.

So, I ask myself what I like about my guy, and whether he is he doing OK today, and the first answer that comes back is that one of the things I love about my guy is that he is doing great today. He is a guy who is naturally beset by anxiety and self-doubt but -- odd as this may sound -- he does not let that get him down and he does not let that get in his way.

I know that school is a strain for him, as he is constantly up against uncomfortable social situations (shunning, teasing, patronizing teachers, lessons that he doesn't understand, disappointing marks without explanations, pestering by another special needs kid who he is often paired with and who cannot understand that the guy needs his space) and yet he comes home every day with a smile and a hug and is ready to fall to the floor in giggles when tickled. When I ask him how his day was he always replies either "good" or "great." That is partially because that is the shortest possible response to the question and the least likely to generate follow-up questions, but only partially.

When I push for details, I'll hear about a yummy lunch, or a good mark on a spelling or math test. I'll hear a few complaints too (usually about the other kid with special needs, some change in his schedule or an injustice -- often as not concerning some third party). But the complaints don't change his assessment of the day, which remains great. And it is great. Nothing disastrous happened, things are more-or-less interesting, and he's home and happy and ready to play video games. What could be better?

Here is another example. A few weeks back I bought some badminton rackets because, being a complete klutz at all ball-sports, I remembered that badminton is not so bad, seeing as the shuttlecock falls relatively slowly. My guy was totally against me buying the equipment because they had been "teaching" them badminton at school and he had been unable to hit the shuttlecock, even when he was serving. Despite this, he was willing to give it an honest go when I insisted that there was an easy way to play. As soon as I had watched what he was doing, adjusted his stance and grip and explained a few basics, he got it. By "got it" I mean that he was able to serve most of the time, only missing his own dropped shuttlecock about 20% of the time. And right away he loved it. Soon he was able to return a serve about half the time. What joy!

Now I am required to play every day. As I am no better at it than my son, we consider a four-hit rally a major success. The great thing is that our guy focuses on those shots that work, where the racket connects with the soft popping sound. He doesn't linger over the more numerous ones where there is nothing but the hiss of the racket passing through the air next to its intended target. That's not to say that he doesn't get mad, scowl, shake his racket, pick up the shuttlecock and stare at it with his most intimidating stare, and shout "my arms are not working!" He does all that, and then, one minute later, delights in a well placed hit. And on the balance, a game that contains 70% misses and 30% hits will only include about 20% grimaces and attempts to stare down the offending shuttlecock. What is more, in the overall our guy will give the whole game a rating of "really fun."

Yesterday was after-school reading help day. It's an 8 km bike ride up and down hills each way. There are plenty of kids, NT or otherwise, who would have quite a bit to say about riding 16 clicks to fill in work sheets. What my guy said, on the way back was, "That was a really fun day, today!" And because we weren't back until seven, there was no time for after-school backyard badminton. Did he complain and give up? No. At 9:30 he pointed out that there were streetlights in the back ally. So, before bed, we were out there smacking at the birdie. It's hard to play badminton in the dark, even with street lights, and we never even got a four hit rally. But on each of the three times that I asked permission to hang up the rackets for the night, I was rebuffed. The game didn't end until nearly ten, when we lost the shuttlecock over a neighbor's fence.

So, as just a few items in the very long list of things that I love about my best buddy, I will mention tenacity, good spirits, hard work, positive outlook, and plain old being a fun guy to hang out with. Those same elements of his character tell me not only that he is doing great today, but also that, if he can stay just as he is, he'll do great tomorrow, too.

Wednesday, April 4, 2007

Not even actionable

One of the things I am finding hard is that the Canadian system is so different from the US system. My first thought when I started having trouble with the school was to get an education lawyer. Unfortunately, they do not exist and, in this province, neither do professional or volunteer advocates.

I spoke with the head of instruction at the school board, who had lived in the States for a long while and she explained that the big difference is that there is no solid legal underpinning to school obligations in Canada. There is nothing like the the Americans with Disabilities Act to tie it too. Also, an IEP is not a legally binding contract here. It is just a plan, but there are no consequences for not following it. To make things more difficult, the Principal has very little instructional authority over the teachers. This is a union issue. So nobody in the school is in a position to ensure that an IEP is implemented, which makes an IEP much less of a high-stakes deal.

There have been class action suits against school boards, but individual-level litigation is apparently unheard of, at least in this province. I'm Canadian, but I have to say I am much more comfortable with the US system. I would much rather have an advocate or an attorney with me at our upcoming IEP meeting. We didn't need one in NY, because the school did things really well, but it was nice to know we had the option. And it was nice to know that the school knew that we knew that we had the option. (How's that for a theory of mind exercise. )

But even if we had a lawyer, I don't know how much it would help. The real problem with the school is not so much that they are withholding services as that they are doling out services in an almost random manner that seems to be doing at least as much harm as good. They keep dragging him out of class for behavior classes where kids with self-control issues learn not to swear and not to hit people. Our guy would never, ever swear or so much as raise his voice. One of his main problems is that he is extremely shy, self conscious, lacking an confidence and over-compliant. But for the school, a social behavior problem is a social behavior problem, and kids with social behavior problems get bundled off to learn not to swear.

Likewise, they pull him out of class for what they think of as remedial reading help. In this class they work from a text book published in 1973 (I am not kidding) and write out lists of words in alphabetical order in the hopes of boosting vocabulary. The guy has been getting individual speech therapy for years, where therapists work very hard to get him to take a flexible and communication oriented approach to language. The last thing he needs is someone telling him to memorize lists of words. But here again, if kids have trouble with reading (and, by the way, the standardized tests show that he doesn't particularly, he just has troubles *talking* about what he has read) then they get pulled out of class to memorize words.

Meanwhile, what they won't do is help him keep up with what is being taught in class because they see that as too much of a strain on the poor little guy. The poor little guy, by the way, got 3s on all his independently graded statewide tests last year. But for his teachers, kids who talk funny are stupid, and parents who say otherwise are unrealistic.

On the up-side, we've got a number of outside school things going on now. He's got a very good SLP, he's just started a real social group for ASD kids, where they learn things like how to start conversations and joke telling, and he's going to an after-school tutoring place, which he likes.

On top of that, today I spoke to a guy who does the computer systems for a local bookshop and the person who works there is a former school board trustee, whose (now 18-year-old) son had/has special needs, and who is a key member in a local association of parents with special needs. She wasn't there when the fellow took me round to meet her, but I'll go in again in a few days time. One thing that we are considering is changing schools, and this person/association sounds like a good place to start getting info on where is good and where is not.

So, there we are: not where we want to be, but perhaps moving in the right general direction.