I Have Tourette’s, But Tourette’s Doesn’t Have Me

In every school in America, it’s likely that at least one child has Tourette Syndrome (TS), a neurological condition characterized by repetitive, involuntary vocal and motor tics that persist over time. Many parents and educators don’t recognize the symptoms and often the disorder goes undiagnosed or misdiagnosed.

Produced in association with the Tourette Association, I HAVE TOURETTE’S, BUT TOURETTE’S DOESN’T HAVE ME presents a candid, wide-ranging look at the lives of children growing up with this baffling condition. Directed and produced by Ellen Goosenberg Kent (the Emmy®-winning HBO specials “How Do You Spell God?” and “Happy to Be Nappy and Other Stories of Me”), the special demystifies and humanizes what it’s like to have TS by giving voice to children ages eight to 13 who have the disorder.

The documentary features the youngsters going about their daily lives, doing all the things regular kids do. It shows that some can also have problems with impulse control, e.g., tantrums, verbal outbursts, or obsessive, unusual behaviors. Though medication can help control TS, there is no cure.

The children speak frankly about living with Tourette’s. While freely describing the wide range of physical tics and obsessive-compulsive behaviors that characterize the disorder, they also poignantly reveal the most debilitating effect: its emotional impact. Too often these children are subjected to the painful ridicule and scorn of their peers, or even adults.

They also tell of the devastating impact of being ostracized by their fellow students. And they respond joyfully when a friend understands their condition and accepts them. They want nothing more than to be like everyone else.

In response to bullying and teasing, school systems across the country are adopting curricula to teach acceptance of diversity, as well as the tools to bring about positive conflict resolution. Each year, a large number of prestigious organizations, including TSA, sponsor “No Name Calling Week” in schools nationwide.

I HAVE TOURETTE’S, BUT TOURETTE’S DOESN’T HAVE ME will be an invaluable tool in this “campaign of compassion.” At a time when children with disabilities are mainstreamed and no longer kept on the sidelines, it is vital for others to hear their voices. Through an open and honest discussion of their differences, these children show just how similar everyone is.

I HAVE TOURETTE’S, BUT TOURETTE’S DOESN’T HAVE ME is produced in collaboration with the Tourette Syndrome Association; directed and produced by Ellen Goosenberg Kent; co-producer, Beth Aala; editor, Andrew Morreale. For Tourette Association: President, Judit Ungar; VP, Medical & Scientific programs, Sue Levi-Pearl; Manager, PR & Communications, Tracy Colletti-Flynn. For HBO: Production Executive, Susan Benaroya; Coordinating Producer, Sara Bernstein; Supervising Producer, Dolores Morris; Executive Producer, Sheila Nevins.

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