Wednesday, May 20, 2009

Twin with Tourettes Syndrome

When Carter was 4 years old, I began to notice some odd movements and mannerisms he had. He had already been diagnosed with focal seizures and migraines. I took him to his neurologist for a medical opinion on his mannerisms. He began to constantly tug on his shirt at his right shoulder. He would be fine as long as he was moving, however, when he slowed down to eat, color, or watch TV, he would begin tugging on his shirt. That went on for a couple months. He then began to click his tongue randomly when he got nervous, upset, or stressed. His began to develop a temper as well when he couldn't get things perfect. I took him to the doctor and after several tests and observations and studies, Carter was diagnosed with Tourettes Syndrome. I was upset at first, only thinking about was he going to get picked on in school, how will this affect his learning, his athletics, etc.
My sister bought a DVD on Tourettes Syndrome that helped me tremendously. It was shown from the point of view of the child. I joined a Tourettes chat room and support group that was fabulous.
The decisions I've made regarding this is I will not tell him until he is older. The doctor said, Tourettes peaks in boys during the teenage/puberty years. He told me to hold off on telling him until he is mature enough to handle it. As of now, I am guessing I will probably tell him when he is about 9-10. I will leave it up to Carter to decide when we tell his brother. I know Brandon will defend him and help him through it, but I will allow Carter to make that decision.
I have also learned that the tics, as they are called, come and go. They also change. His kindergarten teacher called me in for a conference because of his severe and erratic eye blinking. I had also made the decision not to let the school know because I wanted him in a mainstream classroom without anything in his permanent record. I told his teacher about it and she left the decision up to me. I know eventually, I will have to tell the school, however, for now, it is strictly a family thing. My immediate family knows and that is it. His current tic involves flipping his chin with his forefinger. We have gone through about 10 different tics in the past 3 years. I do not try to stop them, slow them, or even mention them. So far, he has not noticed what he is doing.
Another thing regarding Tourettes is that you have to let the child release the tic. If you try to control it or stop it or if the child feels the need to hide it and not release it, that is when the tics will come out as random screams, curse words, or yells.

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