Taking on Tourette's: Families Reveal Their Personal Struggles

Struggling to Fit In

Dealing with Tourette syndrome within your family and in the privacy of your own home is rough enough, but imagine coping with the disorder in a public school classroom where even the average child struggles not to stand out.

Devon Renoldson, 12, whose symptoms include barking, convulsing and even falling down, has been home-schooled for the past three years, but now she is preparing to return to public school. The night before her first day, a nervous Devon stayed up half the night ticcing. The symptoms continued throughout the morning, as stress is often a trigger for Tourette.

Reluctantly, Devon made her way to school and agreed to give a brief presentation on Tourette to her sixth grade classmates. Unexpectedly, the presentation also became a memorable show-and-tell, as Devon began to bark and convulse uncontrollably.

At lunch, a few of her classmates commended her bravery but also confirmed the biggest fear of every Tourette patient -- social rejection. "It's hard to make friends when people are already making fun of you," said one boy.

By the end of the day, Devon's mood darkened. She vowed never to return to public school again. At home, her tears turned into a tantrum. She even hung up the phone on her father, who called to check in.

Moira Renoldson, Devon's mother, reached the end of her patience. "This is typical [behavior] of Devon. I don't know if it is a symptom of the Tourette or if it's just an 11-year-old attitude," Moira said. That is an agonizing dilemma every Tourette parent must face.

But despite her fears of rejection, Devon returned to school and was able to finish the year with straight As. Overcoming her fear of public speaking, she is now a youth ambassador for the Tourette Syndrome Association where she helps educate other kids about the disorder.

"People think I'm different, but I'm not. I'm just a normal kid. I wish [others would] realize that," said Devon.

TS Kid: 'I'm So Emotionally Tired'

On an alpaca farm in rural New York, the body of a young teenager never stops moving. Despite her more subtle symptoms, 14-year-old Nikki Blowers' rebellious body exhausts her, exacting a punishing emotional toll.

"I can't behave as normal kid. I can't ride my bike, go outside, I'm so emotionally tired," cried Nikki in a video diary. For Nikki Blowers' family, these emotional episodes follow a familiar path -- euphoria followed by frustration, which sometimes end in a meltdown. These episodes are the emotional counterparts to motor and vocal tics.

Nikki claims she has no recollection of these rage episodes where she snaps at her parents, yells at her brother and rolls around on the floor. But for her family, they are hard to forget.

"It's really tough some days having a TS kid," said Nikki's mom, Mary Blowers. "It's an emotional rollercoaster and some days you think, 'I just can't take it anymore.' You just want to walk away."

"A good percentage of kids with Tourette have rage episodes, like a toddler's temper tantrums when something triggers this uncontrollable anger that lasts for 20 to 40 minutes and it's over," said Mink, who treats Nikki. "It's not willful or intentional or calculated behavior. Most of these kids feel remorseful."

Nikki has been able to work through her tantrums, becoming an accomplished harpist and honor student. She has also decided to try and launch her own cooking show.

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