Saturday, March 30, 2013

talking about having Tourettes

First let me say HAPPY EASTER!!!

Second, sorry I have been MIA.  I took Hubs to the ER last Sunday and he had to have emergency surgery Monday morning.   He then developed a complication that set him back a couple days.  I am happy to report he came home yesterday and is slowly recovering.  Not exactly the spring break I was planning.

For Drew twitching has been something he has done for as long as he can remember.  First it was a shoulder shrug, then a hop step and over time they have developed.  One tic he as is that he holds is breath for a couple seconds.  That one bugs me.  I worry. His vocal tics come and go depending on stress.  We are seeing improvement since the Botox treatment.  That treats the simple tic of the head turn.

He has a couple complex tics.  The most recent is he puts his hand in front of his eyes and turns his head..

He gets so frustrated.  Tonight he was having snack and his body jerked and he spilled milk all over him and the table.  He immediately started to apologize saying " I am sorry.  It is my Tourette's"  I sat down and told him he NEVER EVER EVER had to apologize to me or anyone else for something he could not control.  I told him it is part of who he is just like his brown hair and brown eyes.  He told me he wished he had a sign he could carry saying he had TS.  He always feels like he needs to say he is sorry.

We started talking about how to explain it to people.  To educate them and how he could use humor.  It is a hard concept for a 10 year old to grasp.  I told him the best explanation to give is the one he gave the first time he met his rock climbing instructor.  "Hi my name is Drew, I have Tourette's, I twitch"

Works for me.  I have a couple of  my own. Some were swiped from other TS parents

Tic and the whole world tics with you...or at least stops and watches for a while.
A tic, a shout, that is what it's all about.
Sometimes I feel like a tic. Sometimes I don't.
And my favorite.  I made it up and hope it will make the parent Tshirt
Ticcing....It ain't just for clocks anymore!

With something like TS...Humor is the best education.  I hope I can help Drew to understand that.

1 comment:

Domestic Bella said...

Oh, the story about him saying sorry breaks my heart. I cannot imagine what a tough journey this is for him (and you). What a strong boy he is and what a strong mama you are!