Wednesday, September 9, 2009

Great Expectations

You guys have asked me so many amazing and thought-provoking questions that it seems a shame to lump them all into one blog post, so I'm going to do a couple answering a few questions in each. How 'bout we start right now?

Ronnette and Blogzilly asked me questions that I think can easily be pulled together into one answer. Ronnette has a son with a rare chromosomal deletion and the doctors have not been very positive about her son's potential. Blogzilly wondered where you start and also how you measure your effectiveness. I'll answer half his question today and the other half in another post.

Let me start by saying that as little as three years ago I would have assumed that a genetic issue meant serious and unconquerable odds. I was also pretty naive three years ago. But then I read something about Sarah Palin ( I know, I know) that got me thinking. She said, "what do we really know about Down Syndrome?" and man, how right it that? We know what causes it and we know what it looks like, but other than that? The information is scarce. That's a well-known genetic anomaly. What about the lesser-known ones? I think that we probably know very, very little. In my humble, non-doctor opinion, I would never assume that my child wasn't completely capable. Short of metabolic issues that affect the brain's ability to transmit information, I would assume that my child was capable. I went ahead and googled the specific genetic anomaly that Ronnette is dealing with--we're members of a support board together so I had access to that information. The first thing it says, right at the top is "typically these children have impaired mental capabilities." Notice what I did? Typically. What's typically? Can I get a percentage please? If it were me (and it's not) I'd try to get my hands on exact numbers and then I'd convince myself that my child could be in the small percentage that are less affected.

Why so crazy? Because expectation becomes reality. As a teacher they drilled it into our heads time and time again--expectations WILL affect student performance. If a middle or high school teacher can have that much effect, imagine what a parent can do. The studies are there, the facts are in. . . kids respond to expectations. So make sure when you're dealing with your child, you don't hold the bar any lower because they're disabled. As I've said before, giving your child the benefit of the doubt is free. I've only been exploring the world of special needs for a little over two years and I have been straight-up astounded at the result that are possible.

Blogzilly asked "how do you know?" and there's the other side of this coin--you just have to believe. Children are horrible testers for one reason--they don't care. My Charlie is a perfect example--he'll be playing with a little board that has five shapes on it--when pressed, each says its name and makes a funny noise. Charlie could easily press triangle thirty times in a row--he finds the noise that delightful. So I'll come over and ask him to press the circle. At best, he'll do it once and then he's back to the triangle again. Movement is effort and frankly, he's only going to put out so much effort to make me happy. But he's pressed circle for me enough times that I don't think it's a coincidence. So you gotta believe that you're getting through and that your child is processing and understanding. I'm not saying that you should yell in ears of a deaf child in the hopes that they'll understand, but if they're looking at you, assume they're listening. Treat them like every other child. I mean, a typical child doesn't talk until they're almost two, but we assume they're assimilating something before that. Give your non-typical child the same credit. Sometimes you'll see parents who don't give their children the same credit that they give their dog. I mean, my dog knows a couple of words and he sure as heck knows when I'm upset or when I'm cooking. Surely, our children are at least that capable. There are tons of stories out there of kids who are quite disabled, but eventually they figure out how to communicate and BAM! they've been paying attention all along. There's a mother in my ABR support group whose daughter was communicating in complete sentences the first day she had access to augmentative communication. Jenn over at Jude's blog has a similar story that she just posted.

Our kids can do this. They've got tons of issues but not one doctor can promise you that your child won't be smart or at least average. If they say otherwise then I'd ask for the research to back up their claims. Press on. The way I see it, I'd rather go to bed wondering whether or not they understood than wondering whether or not I gave them all I could.