Monday, November 28, 2005

November is National Epilepsy Awareness Month!

Before November is over, I thought I'd remind everyone that November is National Epilepsy Awareness Month. Usually when I announce that there is such an awareness month, many people tell me they had no idea such a month existed... Which proves there is a need for awareness.

We are all here because we have a loved one with special needs (or because we are someone with special needs.) As you can see, the disabilities here are very diverse, however, seizures are unfortunately very common in all types of special needs disabilities. So although some of us are different, we sometimes share the same problems. We need to find a cure for seizures and Epilepsy.

Rather than take away from this blog, and the wonderful posts that are written, please click here to read more about National Epilepsy Awareness Month - before the month is over! ;)

Saturday, November 19, 2005

I hate IEP meetings.

(IEP=Individual Education Plan)

I haven't always hated them. Back when R first started pre-school they were a breeze. He couldn't really do any of the things pre-schoolers are supposed to do, so we just set small, seemingly attainable goals, smiled, cracked some jokes, tossed our copy of the forms in the backseat, went to Target.

But then R started meeting the goals. Which is good, right? I mean, it seems to be important that a child sit when and where he should sit, that he feign interest in the poorly executed dreck of a story, that he clap when the others clap, or snap or stomp or wave or point. Fine. R can do those things. Hooray.

I worry now that these goals, these attainable, important goals may be sucking the very life out of him. Sucking out the very Robbiness we all know and love.

I volunteered in his classroom the other day, and, man, what fucking chaos. The room is teensy-tiny and inhabited by ten boys and just the two little girls. And it was deemed too cold to play outside. Those boys needed to play outside, cold or not. They were insane. Absolutely insane. Itching to use their large muscles. Since they could not, they decided to yell a lot and throw things.

Now, I am not used to groups of children of any size. I am used to just my one boy. My one thoughtful, sweet, easy-going little boy. And he remained my one thoughtful, easy-going boy all day at school. He wasn't interested in throwing toys at the other boys or yelling or being insane. I think he wanted to do Math. There was another one thoughtful, easy-going boy, called Josh. All he wanted to do was Art. He was adorable. He sat with me for a long time cutting and gluing and having an excellent time with ground cinnamon.

So I wonder, now that R can do the sitting thing and the feigning interest thing, ought he not be challenged to do more? He is freakishly smart. Shouldn't we teach him things, like Math? He loves to paint and read and write. Just because he isn't talking communicatively at school, well, is that any reason to make him stay in this class and feign interest for three hours?

I can see him having a much better learning experience over-all in a smaller class with more one-on-one instruction, with children who are interested in academics, who like to read and write, who want to learn.

I remember, when R was newly three, our visit with the Speech Guy at Childrens'....he told me that it was Bad that R could read before being able to talk. It's called Hyperlexia. Okay, yeah, wtf? How in the fuck can it be Bad to know how to read? HOW?! Not buying it. Didn't buy it then, won't ever buy it.

Anyway. Just thinking while typing.

Here are some online samples for those of you who are not familiar with the format.

Tuesday, November 15, 2005

Burden of proof

CNN: High court rules against parents in special education case

I suppose I shouldn't be surprised, and I'm not. Also, I understand the argument that the schools are trying to make, about a flood of lawsuits flooding thair resources.

But I don't think as special needs parents, we are all just lying in wait for the opportunity to sue the pants off the schools at the first sign of non-compliance. It would have been nice to see the burden of proof put on the entities that have the resources to defend their academic choices, rather than on the parents, most of whom eventually get put in a position where they run out of options and simply accept whatever the schools give their child, appropriate or not.

The burden is on the parents. Thank you, Supreme Court. And don't worry your pretty little heads about us. Nothing's changed for us. We'll still fight for our kids as best as we can, because unlike the schools, we don't have a choice.