Re: Tourrette's Syndrome

Hi Sheri:

Our son, who is now 7 was diagnosed with TS one year ago. We are having a great deal of success with the conventional route, but I thought I'd share some things that have helped him, (and us!),socially.

First, develop a strong working relationship with your daughter's school. You will acquire valuable feedback on how she interacts with peers and volunteer at the school if you can. Just making your presence known can help other kids see her as a normal kid. Also, talk to the teacher about having your daughter, (or you or the teacher), do a presentation for the class on TS. This puts it in a more scientific light and children react very positively to it.

Secondly, take an active role in fostering friendships any way you can. We started inviting children from his class and having them over for just short periods, (1-2 hours) at a time. Also, if you go to church, this can be a great relationship-building area too. I know that I had a very hard time making those first steps with new people, but it helped so much. Getting your child in with groups of people will give them the opportunity to know her, and they'll eventually see the tics as only a very small part of her personality.

I might also suggest finding a neuropsychologist because many children with TS have other issues, too. (As your daughter and my son do.) Ours has been extremely helpful with treatment by assessing learning disabilities and giving us wonderful input for behavior modification. I especially have a difficult time ascertaining what he can do vs. what he just doesn't want to do. The Dr. has really helped us with that also.

Occupational Therapy has been an excellent route to help build our son's self-esteem. You probably have read that many children with TS also have sensory integration problems, (i.e. coordination, gross/fine motor muscle development delays, defensiveness to touch; ours does). Our son began OT about 6 weeks ago, and we have seen tremendous improvement already, not only in his physical abilities, but with his self-esteem.

What we have found in our son's case is, that all of these subspecialties have worked together to help him as a whole. We have seen such an improved attitude toward school and more positive relationships with other children. We still have issues from time to time with other kids, but they are a whole lot fewer than even a year ago. They are mostly directed at us, when we're making him turn off video games to go play. (During a rage, he informed us that we have brains the size of a walnut! Isn't that funny?)
I hope this helps. Tweet