Devon Rennoldson, 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.
On an alpaca farm in rural New York, the body of a young teenager never stops moving. Despite her more subtle symptoms, 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 really tough some days having a TS kid," said Nikki's mom, Mary. "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."
The one thing, the four brave girls who lifted the veil on living with Tourette syndrome want you to know is if you look past the screaming, barking, swearing, and twitching and into their souls you'll meet some remarkable children that at their core are just like everyone else.
Fortunately for those with Tourette syndrome, studies suggest that about one-third will outgrow their tics completely and another one-third will have them severely diminished to point where they no longer seek treatment, Mink said. The remainder will still have to cope with the symptoms. For more information on Tourette, please contact the National Tourette Syndrome Association.