Thursday, January 27, 2011


I just have to say: Denver's Children's Hospital is FANTASTIC.

Colorful. Friendly.

They have nursing rooms.

They gave both boys who went with us today teddy bears.

We were there because we've known for 4 years now that Caleb has a facial tic, and, after some research, we were fairly confident that he had a movement disorder/tic disorder, both in his face and his voice.

But we needed the official diagnosis to be able to say to his teachers, for example, "Don't rush him or cut him off; he really does know what he has to say, he just can't get through it quickly because his vocal folds tic" or, to his dentist, "Don't get mad at him when he doesn't keep his mouth open or his head still--his face tics, and the more you insist on him holding still, the worse the tic will be."

So we went to a pediatric neurologist. We described Caleb, and the doctor and her medical student (who was doing her rotations) were both FLOORED by how brilliantly smart he is. The med student nearly fell off her chair when we mentioned that Caleb was editing Wikipedia when he was in Kindergarten, and copy editing my novel for me--correctly--when he was 5.

They also said we nailed it. Tic disorder that affects face and voice.

They also said that they don't treat tics in kids unless it interferes with their social life (if they get teased) or if it interferes with their academics. Caleb is fine on both counts (thanks to homeschooling, in part--other homeschooled kids are WAY more tolerant of quirks like tics than public schooled kids. In general.). We didn't want to do meds anyway--the reports we read all over online were that the side effects of the meds were much worse than the tics. And the doctor said most kids outgrow their tics by the time they're 20.

So, what  is a tic disorder? Think Tourette's. Only most kids with tic disorders do NOT swear. Caleb just has a nice big grimace that shows up, a head twitch, and he echoes syllables he's just said, like he is compelled to repeat them three or four times before he can move on to the next word. It sounds like he can't think of what to say next so he's just repeating what he already said, but really he knows exactly what he's trying to say. You just have to wait for his vocal folds to relax and let him say it.  We explained it to the other kids last year (when we became sure of what it was and it was very apparent to them that he was doing something) by saying that it's kind of like a sneeze. Only they only have sneezes in their noses. Caleb gets them in his facial muscles and in his words--he can't help it any more than you can help a sneeze, and it doesn't mean anything more than a sneeze. It's not a big deal. It's not catching. It's just part of who Caleb is.

So all the kids are totally okay with it and we mostly ignore it (partly because if we do talk about it, it makes him tic more, and that gets uncomfortable for him.).

The doctor asked if that bothered him, and he said, "No. I just keep going until I get to the end of the sentence." It really doesn't bother him.

Caleb is completely comfortable with his tic--he even makes jokes about it. I think that's partly because we never made it a big deal. Ever. Even when we had to sit the other kids down and tell them to STOP DOING THAT repeating syllables thing. They had all picked it up from Caleb and thought it was an appropriate vocalization meaning "I'm thinking"--the way the rest of us use "um". We just explained that Caleb can't help it, but they can and they shouldn't do that. Caleb was there, and he was okay with that.

For him, having a tic is kind of like having to wear glasses. Or having hair that stubbornly sticks up. It's just part of you and you live with it. No big deal.

Caleb is a cool kid.

Oh, and the doctor said he's "neurologically perfect. He just has a tic."  That's great to know.

It's also not catching.

But there is some evidence that it's genetic.

So that squinty blinking thing Benji started doing last month? Yeah....we're watching that.

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