Developmentally Disabled

I've heard a lot of discussion lately about the word "retarded". I've touched on it before---in some ways, I wish it could be reclaimed as an acceptable word. I would NEVER want it used as an insult, toward Janey or toward anyone else. One of my proudest parenting moments ever was when Freddy told me that when kids at his school were throwing around "retarded" insults to each other, he stepped in and said "Hey, guys, don't say that. I have a sister who really is retarded, and it's not something to joke about". That took a lot of guts. And he gets it---that in the right situation, it's a descriptive word of a developmental level. More so than one of the more used euphemisms, "developmentally delayed". I don't like that, because it implies that at some future date, the child will catch up. If a bus is delayed, that doesn't mean it's NEVER getting there. And of course, like every mother on earth, I dream that someday, Janey will catch up completely, go to Harvard and become president. But I don't think she will. I think she will make progress, but I think she will always be behind. So if it's not correct to say "retarded", perhaps "Developmentally Disabled"? That's a mouthful, but more accurate, I guess.

And why does it matter? Well, because her other label, autistic, includes such a huge range. I know people "on the spectrum" that are brighter than most of us would ever dream of being, in our wildest dreams. I have a son originally considered to be on the spectrum who is currently first in his class. And the wide umbrella of the spectrum means that saying Janey is autistic sometimes leads people to assume she is a far different person than she is. You would hope they'd just get to know her and know who she is, but not everyone in the world is going to be able to do that. And I've actually had someone say to me "Oh, kids with autism are so smart!" And some are, and I'm glad that people know that. And Janey is too, in certain ways. But in the ways that get graded, she is not.

And so again, why does it matter if people know that? Well, imagine you had to explain to a child they needed to hang up their coat and sit down for lunch. It makes a big difference if the child can understand a statement like that or not. Or if you wanted them to pick their name out so they knew where to sit. You would want to know if they are just being stubborn or shy when they don't, or if they can't read. What if you assume a child of 6 should know not to run toward the road, or pick up sharp objects? What if a child is considered rude for not answering questions? With all those situations, it would be helpful to have a quick way to explain that Janey can't read, or understand much of what is said to her, or follow safety rules. Helpful, but I guess not crucial. I've used the short answer version quite a few times---"Janey is autistic and doesn't talk much". That usually works.

I've noticed lately that Janey is doing a lot of things two year olds do. She wants to take off her clothes a lot, which is a "two" thing, she dumps out water or small items all the time to see and hear what they sounds like on the floor, and she is enjoying saying "NO" more. Today I took her to get Pringle Chips, her favorite treat. I found them on the shelf and said "Is that what you want?" and she answered surprisingly directly---"NO!". She then put on quite an acting job, and looked over every other bag of chips at the store, and finally reached for the very can of Pringles I originally showed her and handed it to me. That's two for you. It was fun to see! And that is making me think again about the "developmentally delayed" label. Maybe it does make some sense, if it's kept in mind at some point the delay may slow almost to a halt. If she's 4 years behind now, we can't extrapolate and think that when she is 20, she will be like a 16 year old. If we do ratios, maybe she'll be like an 8 year old or 7 year old. That would be good.

So, who knows, really? Like so much, the right words, the right term, the right predictions---they are all hard to come by. Janey is Janey.