Friday, April 14, 2006

Twitch and Shout

I just returned from the Tourette Syndrome Association's National Conference in Washington DC. It was a wonderful experience. I love that everyone with TS can feel accepted and understood in this setting. In fact during the workshops there are so many vocal tics that when the fire alarm sounded, we didn't realize that was what it was. At first no one reacted. (we thought it was someone's tic!) The best part of the conference is seeing people who come back each time. It's fun to reminisce as well as share the things that are happening now in our lives. It was good to see that a few people who's tics were very severe in the past, experienced some relief.

I once went to find ways to help my children. Now that my kids are doing well, I go to bring back information for other families. I also go to ask our legislators to support funding from the Centers for Disease Control. This funding allows the organization to provide awareness training for professionals who don't know about Tourette Syndrome. We also asked to have TS added to the list of disorders considered to be O.H.I. or Other Health Impaired. ADHD, OCD and Autism is on the list but TS isn't. [I guess] it's a good thing that most kids with TS also have c-morbid disorders like ADHD and OCD so they can received Special Ed services.

One of the best parts of the conference is seeing all of the kids that were able to attend. Some didn't know other kids with TS and this was their first experience. I could see how much fun they were having together.

The conference came to a close for most of us with a banquet, awards and entertainment. First the talented Wolff brothers age 9 and 11 played a couple of songs for the audience. They are such cute kids! Secondly, a band of folks from Georgia with TS played while Dr. Duncan sang "Twitch" and Shout. Who wouldn't want to dance to that? I had to put my camera down in a hurry! That night, hugs and goodbyes were shared with everyone. I hope we'll be back in two years for the next conference.