On Tourette’s Syndrome

It’s not easy being a mother of a Tourette’s child. On the other hand, it’s been one of the most rewarding experiences of my life, if not the most rewarding experience. I grew up wanting to be like everyone else; yet, having a Tourette’s child made me face difference. I grew up again with my child, learning to accept the notion that not always being in the in crowd could give me the perception and empathy to gain insight into the human experience.

Five years ago we completed a film on Tourette’s at HBO. It was a film that incorporated the realities of children facing tics, guttural sounds and behaviors that separated them. In the children in the film, as in my own child, I found the compensatory genius that often comes from difference. To grow up separate gives you an exclusive domain. This domain is often painful to children. By experiencing other people for what they are, these children learn who understands the human experience and who doesn’t. They do this at a very young age. The people who accept you for your difference become part of the most valuable and new in crowd. Tourette’s children have the perceptions to evaluate people at a moment’s notice. They know who cares, and they know who makes allowances for their exceptional selves.

“I Have Tourette’s, But Tourette’s Doesn’t Have Me” came out of raising a Tourette’s child. With the brilliance of the producer and director, Ellen Goosenberg, we created a documentary that allowed people to see that what was inside a child was more important than what was outside. The film showed that if you survived differences, you came out of it all with the spectacular skills that belong only to those who metaphorically have climbed Mount Everest. The film was made mostly for children in schools to show to their classmates to help them understand the nature of the Syndrome and to deflect the slings and arrows of an often bullying childhood. The film was meant not to say, “Don’t you wish you had Tourette’s?” but to state clearly that Tourette’s doesn’t own its possessor. The Tourette’s child is not a victim, the Tourette’s child is a conqueror. The Tourette’s child achieves more because he or she has worked harder to achieve. The Tourette’s child understands the hurt and sorrow of the world because they have faced this painful world in themselves. Their empathy will make the world a better place.

So, to celebrate the fifth anniversary of this film, I celebrate my son’s spectacular self and the insights he has given me. He was the very reason I felt bold about coming out as a Tourette’s mom and being incredibly proud of his inspiring self.

Watch a clip from “I Have Tourette’s, But Tourette’s Doesn’t Have Me,” which can be purchased at the Tourette Syndrome Association website, TSA.org. Click here for more on HBO documentaries.

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