Florida teen educates schoolchildren about Tourette syndrome

From the Orlando Sentinel in Florida:

During his first public presentation as Youth Ambassador for the National Tourette Syndrome Association, 14-year-old Nathaniel Ray (pictured) was bombarded with questions from fifth-graders at Stone Lakes Elementary in Orlando last week.

"Is it when someone gets sick by bugs?" asked 11-year-old Isabella Ruiz.

"Those are ticks. What people with Tourette Syndrome have is tics," said Nathaniel, holding up a laminate card explaining Tourette's trademark involuntary movements and vocal sounds. The card came from a stack given to him by the national Tourette's syndrome group to help spread the word about the disorder.

Nathaniel and 13-year-old Jordan Bernstein of Boca Raton were chosen as youth ambassadors from dozens of applicants submitted to the Florida Chapter of the National Tourette Syndrome Association. Among the teens' responsibilities are to go to schools and community organizations to teach understanding and tolerance of Tourette's syndrome and its symptoms, and to dispel myths and stereotypes about the condition.

"It's extremely important to create better awareness of Tourette's, even with all the different TV programs and documentaries about Tourette's, it's still a highly misunderstood and mischaracterized," said Christopher Brown, chair of the National Tourette Syndrome Association's Florida chapter. "Even our doctors aren't up to date on it."

Tourette's syndrome has been spoofed on TV shows such as "South Park" and in films like "Deuce Bigalow: Male Gigolo." A few shows, such as the Hallmark Hall of Fame movie, "Front of the Class," have sought to bring a more accurate portrayal of the condition.

Tourette's syndrome is an inherited neurological disorder affecting an estimated 200,000 Americans, and is usually diagnosed in children between the ages of 3 and 10. The most familiar and caricatured form of Tourette's is called coprolalia, in which the sufferer uses sometimes inappropriate language in bursts. While it is the characteristic of Tourette's most often portrayed, it affects an estimated 10 percent of people with the disorder.

"Sometimes, kids make fun of people with Tourette's," Nathaniel said to the class. "You wouldn't make fun of someone with asthma because they have to use an inhaler would you?"

"No," the fifth graders responded.

"How can you help someone with Tourette's?" asked Nathaniel.

"Be a friend to someone who has Tourette's," said Indiya Williams, 11.

Andrea Slaughter, the students' teacher, said having Nathaniel address his peers about what makes him different was a great way to combat teasing and bullying in schools, "especially among middle-schoolers."

Brown, a NASA engineer with Tourette's syndrome whose 14-year-old daughter also has the condition, said his group works to improve understanding for teachers and school administrators, as well, since the condition can manifest itself as learning disorders or mistakenly be seen as a behavioral problem. Children with Tourette's have a higher risk of learning, behavioral and social difficulties. In addition to tics, many studies have linked Tourette's to higher rates of Attention Deficit/Hyperactivity Disorder and Obsessive-Compulsive Disorder, as well a learning disabilities.

"Our knowledge base about Tourette syndrome is minimal because it is so rare," said Julie Jawarski, guidance counselor at Stone Lakes Elementary. "Our ultimate goal for any child with special needs is to provide the least restrictive environment as possible. Nathaniel is doing more than helping other kids understand his difference, it also helps us provide the best educational experience for him and other kids with his condition."

Now in its third year, the ambassador program has trained more than 38 teams of teens from across the country and reached an estimated 3.5 million people. Nathaniel heard about the program last fall in a Tourette Syndrome Association newsletter.

Nathaniel, who was diagnosed with Tourette's at age 7, first exhibited signs of the disorder when he began blinking his eyes repeatedly.

"We thought it was allergies," said his mother, Betty Ray.

Within a couple of weeks, her son began jerking his head back. The tics lasted 30 minutes to an hour. Soon afterward, a neurologist prescribed medication to treating him for tics, OCD and ADD. But medication for Tourette's is a system of trial and error. Nathaniel rattles off the different pills he's taken: clonidine, risperdal, Tenex.

"The meds made me feel like a zombie," Nathaniel said. "I felt like I was being held back. I didn't want to take the meds, and some of them had worse side effects than tics."

When the Rays moved to Orlando in 2005, Betty found a research study on Tourette's and OCD that included more recent classes of drugs, such as Lexapro, an anti- anxiety drug.

Nathaniel's tics are now facial — he grimaces uncontrollably — and his body jerks at night for about 30 minutes. His mother said it is a response to controlling his movements all day, which eventually must be released. Anxiety, excitement, fatigue and illness can exacerbate the condition.

"It's not easy for him. But it's given him a stronger work ethic. He works two-three times harder than other kids," said Betty Ray. "He's much more compassionate toward others who are different. It's helped mold his character."

Added his father, Raymond Ray: "I feel very proud of him. I tell him this has been an opportunity to grow as a person. And he has."

As an ambassador and spokesman for Tourette's syndrome, Nathaniel is a natural. He's making straight As. He holds a purple belt in karate. And he hopes to one day be an astronaut and missionary — his family attends a non-denominational church in Avalon Park.

Nathaniel's dreams, and more importantly, his faith, have inspired him to succeed.

"God gave me this. It made me a stronger person than who I am," he said. "God's going to use me to do something good one day."