My son has Down syndrome. So far, it isn’t much of a big deal, it just means that I think about Down syndrome and labels more than I used to. And I’ve been thinking about labels for a long time, so thinking about them more, well I guess that is something.
Many years ago, I worked at a school for kids with moderate to severe developmental delays. At all the inservices, presenters always reminded us to use “people first” language (as in “the kid with Down syndrome” not “the Down syndrome kid”). I think that I first heard that term when I worked at Virginia School. I didn’t think too much about it. The people around me pretty much used people first terminology already.
The labels, though, those were tough. The first couple weeks were devoted to setting up my schedule, reviewing files, getting to know kids, and establishing my routine. It was the file review that got me. I pored over those files looking for labels and an official diagnosis. Some kids didn’t have a medical diagnosis, and I found it distressing. I wanted everyone to be categorized into neat little boxes. The ink on my diploma hadn’t been dry very long when I started there, and I naively thought that if I knew the name of the problem, I could fix the problem.
It didn’t work that way. I remember one kid who’d been on the receiving end of a claw hammer to the brain. There isn’t much of a name for that except tragic. The kind of damage he’d suffered had most certainly not been covered in my college textbooks. A lot of stuff I saw there had not been covered in those books.
Fortunately, I soon learned that the labels don’t mean much. Oh, sure, they give an idea of where to start, maybe what to expect, but there are also a lot of exceptions to every “rule” about what it means to be developmentally delayed. In the end, every child is an individual, not a collection of symptoms that can be classified into one succinct, neat term.
It was also at Virginia School that I learned that the appropriate term for Trisomy 21 is Down syndrome not Down’s syndrome (which, up until that time, I had been using whenever I thought of it which was not very often at all). You run it all together and Downsyndrome sounds just about the same as Down’ssyndrome, so what is all the fuss? Still, I tried to get it right, worried that someone might be offended, but nobody ever seemed to be. Mostly, they just wanted me to help their child to the extent that I was able to do that.
And here I am now, some 20 years later, thinking about terms and what they mean. Again I feel that the label itself is a guideline but my child is simply that: He is my child. He happens to have Down syndrome. The label of Down syndrome means that my child is eligible for early intervention services, and he goes to physical therapy once a month where I am assigned a home exercise program for him. And so far, he is developing right on target. That may not last, or so they tell me. Learning will be hard and muscle tone will be low. But my other kids–the ones without labels–none of them came with a guarantee that they’d be “normal” or “neurotypical” or whatever you want to call it. I have a blueprint for what I might expect, and that is a good thing.
A few days ago, I came across an article that explained to me that proper terminology is important–critical even–when working with kids with DS. There were a couple paragraphs devoted to the Down syndrome vs. Down’s syndrome debate. SO important to get it right, but the author really couldn’t say why it was important.
So I’m going on record to say that I don’t care which term you use. Just see my son for who he is. He’s just a kid who will have hopes and dreams and strengths and weaknesses. He’ll be entertained for hours by sticks and balls because he is a boy, and we will be delighted by him. I don’t know what to call that exactly. And that’s OK with me.