Tourette's Syndrome

My eldest son, Luke, was diagnosed with Tourette's Syndrome three years ago. Actually the full diagnosis is that he has Tourette's, ADD and he's gifted. Since he was a baby, he was different, and for the most part we coped, but it was when he started school that the real misery started.

I think school was like torture for my bright and active boy. I remember participating in his junior kindergarten class and watching him during the circle time. The teacher was trying to get the children to tell her what number comes after 22. My son had his hand raised high in the air, but since the teacher knew he had the answer, she ignored him and tried to help the other children. I watched my boy's hand slowly get lower and his enthusiasm drain right out of him. By the end of her lesson, he was looking all about the room. Anywhere but the teacher.

We decided to try a French immersion school in order challenge him a bit. He had trouble focusing, his handwriting was atrocious, and after a while, behavior problems developed. At home, he would wake up with night terrors. In grade two we saw a behavioral pediatrician who identified Luke's giftedness, but who told us that there was nothing available to help him. By grade four, we had seen two more specialists, one of whom diagnosed ADD and another who diagnosed Tourette's. It seems like every label has stuck.

But the labels do help. It helps to know what books to read, what support groups to try out and that medication is really a necessity. Luke started taking Risperidone for the Tourette's and Concerta for the ADD. I hated to have to put him on prescription medication. But he really needs it. First of all, he didn't turn into a zombie. Instead, we began to see our boy shine. Luke has a humorous and creative personality. Second of all, he was able to cope with school.

The labels were also necessary for the school board to be able to give us some help. Luke entered the Steps for Success program where he learned how to meet the demands expected from him in the classroom and to improve his social skills. Being on medication made this experience more successful I believe. Luke really didn't enjoy the Steps program, but it made a world of difference.

Finally, we pulled him from French immersion and moved to a new home with a new school. At our new home, he has friends in the area who come over all the time. Before medication and the Steps program, Luke felt that he had no friends and that nobody liked him. Now it is such a joy to have our house filled with six kids on a Saturday morning, all carrying on and making a heck of a noise. The new school has been very supportive and accommodating and we have finally seen a decent report card come home.

Today, we went to see Dr. Duncan McKinlay, who is a very well known psychologist, specializing in Tourette's Syndrome. It's his specialty because Dr. Dunc has Tourette's! Even though things are going well for us at home, I still had a lot to learn from Dr. Dunc.

For one thing, I learned that Luke's tics are pretty mild. Luke picks at fuzz, he says funny words, like "Pie!", he fidgets a lot and sometimes he will lick his lips till they look sore. Dr. Dunc shakes his head, and snorts. Often when we are trying to say something to him. Then I noticed Luke had stopped picking fuzz and was starting to twitch his head! I thought "Rude boy is copying the doctor, and he's going to pretend he's learned a new tic!" I mentioned it, right there in front of Dr. Dunc, and the doctor told us that it is common for people with Tourette's to pick up each others tics. He said that at conferences, you can tell who has been hanging out with each other because Bob will be doing John's tics and vice versa. So that's a second thing I learned.

We also got some validation, that we are doing things right, and that the medication is still necessary and may be for the rest of his life. So I just want to say a big thanks to Dr. Dunc for seeing us today and to encourage everyone to go and see his website: Life's a Twitch!