Tomorrow is the beginning of Tourette Syndrome Awareness Month(May 15th-June 15th). My youngest son, Elijah, who is ten years old was diagnosed two years ago with Tourette Syndrome. I am still educating myself about tourettes and the other disorders that go along with it. Elijah also has ADHD, OCD and anxiety. Right now he is doing pretty well and things are improving at school.
Tonight when we went out to eat he had more tics than usual. He was making his motor sound, arghhhhhh. He does it several times, stops, and then starts up again. We got a few looks, but nothing to really notice. He stopped after a bit. We were with my brother, his wife and their daughter. We just ignored it and kept on eating. I often wonder what to do in those situations. It doesn't really bother me, but I would like to educate those around us about why Elijah is doing what he is doing. He is NOT just making noises and he isn't mad. He is just having his tics.
We came home and it was bath time. Oh wow, he cut loose in the bathtub. I call them his "bathroom tics" or his "bang bang tics" because HE BANGS and BANGS on the tub with his hand. Tonight I thought he might take down a wall. I stepped into the bathroom, flicked the lights(he is deaf and didn't have his cochlear implants on), and signed "calm down, no bang bang" and he yells back "they are tics MOM!". I signed, "yea, but quiet, quiet"...meaning calm them down a little and then signed "you break it" meaning the tub. He got it then and calmed his tics a little. I know he can't control them, but he really might just break my tub. There is a small crack in the bottom of the fiberglass tub. He did contintue to bang, but not with as much vigor.
I just bought a flip camera and considered recording his tics in the bathtub, but then thought I might embarass him. I am going to try to get his tics recorded though to show his future teachers and to show the doctor if needed. I may even share them on here for those who don't quite understand tourettes. I hope I can educate others about Tourette's and the assosicated disorders that go with it.
The idea about filming them for teachers....I'd not every thought of that! Thank you for this!!
ReplyDeleteWe ended up pulling my son out last year, though it was only a special education preschool. His third year in it. The school system was having issues meeting his needs, he was just really coming into his tics as I say. Meaning they went from one tic or two for a month or two, to several tics all at once. The teacher was having issues with the noises in class, etc. She was a fabulous teacher in that she'd never had a TS child before and read all she could on children or adults with TS.
I so appreciated the thought behind it but, I also know that, though I'd not say this to her, I've said it to other TS moms, research all you want, while it will provide a better understanding, it can never prepare you for when they hit an upswing and every TS and comorbid behavior seems to take off too!
Anyway, if we can get his sensory issues under control, the ADHD/TS rages under control and meds that don't severely knock him out halfway through the day, we want to put him back in school. Having a video to provide the teacher so that he/she will be able to see firsthand what happens is a great idea! Give them an opportunity to be prepared or a better understanding.
Thanks for this idea!
Em