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I Have
Tourette’s but Tourette’s Doesn’t Have Me
I Have Tourette’s but Tourette’s Doesn’t Have Me is an HBO
documentary about
several children with Tourette Syndrome who live in a world that
very rarely understands them. In the film, these children talk
openly about the conflicts they face each day as they struggle,
like all children, to fit in.
The Tourette Syndrome Association has developed Lesson Plans to
encourage schools to include the documentary as a part of their
curriculum in Health, Character Education,
Language Arts, Science, Diversity, anti-bullying lessons or any
of the many other areas where it would be appropriate. It is
suitable for children of all ages. It is designed to educate
students about the neurological disorder, Tourette Syndrome
(TS), but goes beyond as it teaches students that every person
is different in some way and that differences should be accepted
and celebrated.
The show will air at the following times: 11/20, 11/24, 11/30,
12/6 at 8:30 p.m. and 11:30 p.m. on HBO FAMILY - EAST
Visalia Boy
Featured in Tourette's Documentary
James Ward, Visalia-Times Delta, November 14, 2004
Every time Kelly Coulter watches her son in the documentary "I
Have Tourette's but Tourette's Doesn't Have Me," she cries --
and it's getting on William's nerves.
"Boo, hoo, hoo," said the 11-year-old , rolling his eyes. "Geez,
mom."
But when you talk with Kelly Coulter about her son and his
battle with Tourette's Syndrome, you can understand her mixture
of pride and happiness watching her well-spoken, precocious son
in the HBO documentary.
After a struggle with doctors, hospital officials and teachers
starting when William was 7, Kelly Coulter and her husband, JB,
were told their son had Tourette's syndrome.
The disorder is characterized by a wide range of physical "tics"
and obsessive-compulsive behaviors. In William's case, the
symptoms include uncontrollable blinking, arm movement and the
compulsion to touch items an even number of times.
"It's like fighting an urge to stretch all the time," William
said. "You want to stop it, but you can't."
After her son was diagnosed, Coulter joined the Central Valley
Tourette Syndrome Support Group. The Coulters' work with the
group eventually led to contact with award-winning documentarian
Ellen Goosenberg Kent, who was making a documentary about
Tourette's.
After several phone interviews, William traveled in late 2003
and early 2004 to Southern California for two filmed interviews.
The filmmakers asked him about his feelings about the disorder
and the difficulties he has faced at school.
"I hate substitutes," William tells the camera at one point.
"Substitutes and Tourette's don't mix."
Later, film crews came to Visalia to film William's 10th
birthday party and his "show and tell" presentation about
Tourette's to his Royal Oaks School classmates.
Besides William, the documentary features several other children
between 8 and 13 engaged in a wide range of activities --
playing piano, attending surf camp and creating comic books --
as they deal with Tourette's.
The children speak frankly about the emotional impact of the
disorder, especially when they are ostracized by their peers and
face the wrath of unsympathetic adults or teachers.
"Sometimes you feel like a marked man," a boy named Seth says in
one revealing moment.
But the documentary does have some hopeful moments, too. We see
one boy make a friend at surf camp. And William's classmates
seem both fascinated by the disorder and sympathetic with the
11-year-old.
With the help of medication, William's symptoms are lessened but
don't disappear altogether, Coulter said.
"It's like dealing with a child with asthma," Kelly Coulter
said. "Tourette's is always there in the background."
Because Tourette's in many cases worsens during adolescence,
William's mother is worried about the next few years.
But she hopes documentaries like "I Have Tourette's but
Tourette's Doesn't Have Me" give teachers, doctors and the
general public a better understanding of children who suffer
from the disorder.
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