The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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My Charlie
Charlie Then and Later
Charlie Then and Later
My Charlie

The first time I ever laid eyes on Charlie, I thought he was dead or dying. Due to fetal distress, he was delivered by emergency C-section 10 weeks early. He weighed just less than two and a half pounds. Two and a half days later, Charlie received his diagnosis of Down syndrome, and four days after that, at six days old, Charlie had his first cataract surgery. Charlie often seems to want to be different and do things his own way and on his own schedule. Though we have dodged the really bad diagnoses, like serious heart defects and leukemia, Charlie, like a lot of kids with Down syndrome, has picked up a variety of additional diagnoses over the years, hypothyroidism, GERD, aphakic glaucoma, Celiac, and the big stunner, autistic spectrum disorder. Of course, kids with Down syndrome are not typical. But there are sort of typical kids with Down syndrome, and Charlie wasn't one of them. Most kids with Down syndrome were able to run rings around Charlie. But there's a significant portion of kids who don't do all that well. Doctors tell us that six to ten per cent of kids with Down syndrome also fit somewhere on the autistic spectrum. And there's maybe an additional ten per cent who have other stuff going on. If kids with Down syndrome were made into a totem pole based on how well they're doing, "high functioning" on top and going down in rank order, then my Charlie would be one of the cute little guys on the bottom. Now, if I thought there were only so much success among people with Down syndrome to be spread around, and that Charlie wasn't getting his fair share because others were getting too much, then I might have a different take on all of this. But, fortunately, it doesn't work that way. Somebody else's kid doing well doesn't have anything to do with my kid not doing so well. So, no reason not to join in the celebration of those kids' accomplishments - genuinely and sincerely. It is a somewhat difficult issue. Certainly wouldn't want parents of little kids to lower their sights nor cut back on their hopes and ambitions. On the other hand, I think it's good to remind all interested parties from time to time that not all kids with Down syndrome are going to do all that well. And make the point that those who don't excel are still somebody's kid, a living, breathing, loving and loved child. Charlie may never talk, much less read and write. But he's a fairly healthy, happy, charming little guy. His bus driver tells us that he has a number of attractive women fighting over him almost every morning. All I've ever wanted was for Charlie to be the best Charlie he could be. But it is sometimes hard to know just what that is and hard to come up against the fact that the best may sometimes be not all that great.




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