Thursday, August 20, 2015

Ticcing Away

My baby has Tourette Syndrome.  OK, so she's not a baby, she's 13, but she's my youngest.

It took me a long time to post about this.  Why?  Maybe because writing it down makes it concrete.  Makes it real.  Makes we want to cry, not for me, but for her.  I know she has a lot ahead of her.  And I don't want any of my kids to walk in on me crying at the computer, (so of course one just did) but damn if it doesn't just suck.

I think any time parents are faced with something like this, we all ask ourselves, "What did I do wrong?  What could I have changed?  How could I have prevented this?"  God knows I've asked myself those questions about Mollusc's Sensory Processing Disorder, about Sluggie's digestive issues, about Fishy's speech issues (though he's grown out of all but a slight lisp), and about this.  And I guess the answer is "nothing."  But a niggling voice inside of me says that it's like the Romans dying of lead poisoning due to lead plumbing pipes - it was from something they did.  They just didn't know any better at the time.

For my kiddo, her tics manifest (currently - they change a bit over time) as facial grimacing and vocal squealing or grunting.  Mostly she disguises this as enthusiasm over something, and I must say her BFF is really awesome about it, because, man, I hate to admit it, but the noises can really drive you bat-guano crazy sometimes.  So I have that to feel guilty about as well.

Why?  That's what I'd like to know.  Just. . . why? 

Once Sluggie's done with her acupuncture, I plan to have the doc check out Prawn.  I've heard that quite a few people get good results with acupuncture for TS.  It's just too pricey to add her until then.  There's also habit-reversal therapy.  That might be covered by insurance.  I'm still looking into it.   In the meantime, what a blessing that we homeschool! 

Here are a few famous people with Tourette Syndrome: Tim Howard (US Men's National Soccer Team Goalie and Goalie for England's Everton club), Dan Aykroyd (Blues Brother and Ghostbuster extraordinaire), Dash Mihok (Actor type guy - apparently quite famous - I'm just not in the TV series loop at all), possibly Mozart (Musician Most Marvelous), and possibly Dr. Samuel Johnson (Mr. Dictionary), Michael Wolff (Jazz pianist), Mahmoud Abdul-Raouf (Basketball player), Jim Eisenreich (Baseball player), and Steve Wallace (NASCAR driver).

Almost all of those guys have really demanding jobs where they're under close scrutiny, or where they have to have extraordinary physical control, or both.  And look what they've done!  So that's cool.

For now, I need to talk to her about what she'd like to say when people mistake her grimace for something else.  Because people aren't always bashful about making comments when they don't know better.  "Wow!  That face!" is the most common one.  I suppose they think she's being a "typical teenager" and sneering at something.  Maybe she can tell them, "It's just a tic."  Or maybe she doesn't need to tell them anything at all. 

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