Sunday, April 14, 2013

Fu$K, Sh*t, C^ck! Tourette's SUCKS

It's been awhile...
get over it...

So my 12yo son has Tourette's Syndrome, I've written about it before and I wish I could say things have gotten better since then, but that wouldn't be totally true.
I've finally realized that I must accept the fact that we will be living with this for awhile, if not forever. I'm trying to just go on with life and learn to deal with other people's ugliness (you know, the staring, the laughing, the videoing, the complaints).  I'm trying to focus on the positive of the situation, i.e. my son still lives with the notion that things will be OK, but some days dealing with TS just S.U.C.K.S.

It's one of those disorders that sneaks up on you.  Just when you think you have things under control, a new, more life altering tic appears, and you're flung back to the beginning of the race. Recently we started with the cussing tics, which I had been so thankful that we didn't have, but we learned to deal and things seemed to improve.  Today though, the cursing turned to racial slurs...yes that word, and now I'm scared.  I'm scared to let him go to school.  I'm scared to let him go anywhere.  I have had more than one family member laugh at his inappropriate cussing, but no one is going to laugh at this.
He's going to go out there and get his ass kicked, and I won't be around to explain that he isn't a racist.  He's so far from it...He has no hatred or intolerance for anyone (excluding his brothers, and the willfully ignorant).

I worry that I am not made of the stuff it takes to deal with this.  I worry that I'll be the one to crumble and he'll be helping me.  I don't want to be one of those family's looking for more initials to diagnose my kid with. I just want this fucking disorder to leave my kid alone. I want to be able to keep it in perspective and be grateful that it isn't terminal or physically debilitating (though it could be the latter at some point), but right now I'm stuck in this pissed off place.  People have praised us for our strength in dealing with this, he's the only one with strength.  I just try to time my face-in-the-pillow-screaming-fits so that no one can see. I'm such a wimp, I don't deserve him and he doesn't deserve Tourette's!!!

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