Joseph Staniunas, Special to The Catholic Virginian

 

Imagine you were asked to write something you knew by heart, but that each time someone clapped her hands, you had to stop and make a gesture, such as touching the desk. As you start writing again — CLAP! — you stop and erase some words.

You resume writing and then — CLAP! — you stop and pull your hair. Those random motions would make the task hard to finish and would look odd to most people.

The analogy is one Kennerly Nichols might use as part of her work as a new youth ambassador for the Tourette Association of America.

An athletic 14-year-old — she wrestled and played soccer in middle school and is a member of a traveling soccer team — Nichols and her family belong to Our Lady of Perpetual Help, Salem.

Her pastor, Father Ken Shuping, described her as “a wonderful member of our parish, active as an altar server and in religious education.”

“I’m sure she’ll do great in her new role,” he said.

A freshman at the Burton Center for Arts and Technology and at Glenvar High School in Roanoke County, she recently completed training for her role — one of about 500 teens across the country who work to educate people about this common neurological disorder. The Tourette Association of American says about one out of 100 school-aged children has Tourette or a related tic disorder.

“When I tell people that I have Tourette syndrome they say, ‘Oh, I haven’t noticed anything’ and it’s really not like that for everyone,” she said. “It’s different for everyone. It’s not all shouting out and big arm movements and things like that.”

Her mother, Stacey, said Kennerly started showing some symptoms in kindergarten, and they got worse in elementary school. She would roll her eyes, or quickly tilt her head back, leaving her sore and tired at the end of the day.

“It’s hard as a parent because you’re watching this and you know it hurts,” Stacey said. “And there’s all these contortions and expressions and just muscles that have been moving hundreds if not thousands of times a day.”

Kennerly earned good grades, but schoolwork didn’t come easy. Assignments that took her friends 30 minutes would take her four hours. She’d get nervous and anxious in class, sometimes needing a short walk or a cup of tea to settle down. Classmates noticed her tics, but they didn’t tease or bully her.

“I would catch them copying me, especially when we were younger, because they didn’t know what I was doing,” Kennerly said. “They would catch me staring at them and that’s usually why they would ask why I’m doing this, so then I would tell them.”

Growing up with Tourette syndrome allowed Kennerly to become more comfortable talking about the disorder. Her confidence to take a stand in other situations has also grown.

In middle school, Kennerly decided to challenge the behavior of a teacher who seemed to have a quick temper.

The teacher would do things such as give the class a problem, call on them for the answer, then get angry and say the solution was wrong, when the students knew it was correct.

Kennerly met with the principal and aired her concerns, which turned out to be a big support in taking on her new role as ambassador. “

After all of that, I think I have a little more self-confidence with talking to adults and people in charge,” she said. “I can confidently go up and present information to people because I felt like I had some practice.”

As a youth ambassador for the Tourette Association of America, Kennerly will be giving presentations to schools and community groups, perhaps meeting with lawmakers, too.

“Getting up and talking about it can help other people who might be self-conscious about their tics like I was to understand that there’s nothing to be self-conscious about,” she said. “It’s who you are; it’s not something that you should be ashamed of.”

That message is something that comes from the family’s faith, too.

“The way we’ve raised our children is that first and foremost we’re all made in God’s image, we all have inherent dignity and we’ve always tried to treat others that way,” Stacey said.

Stacey was pregnant with Kennerly when she converted to Catholicism. She and her husband, David, have three other children: Seth, 12; Leila, 9; Jacob, 6, which makes for a busy family life.

Now she’ll be coordinating Kennerly’s advocacy work as well.

Youth ambassadors had to devise a personal story, a short biography of their history with Tourette syndrome and what they have learned so far in dealing with it.

“We all have our challenges, but the truth is we’re all in it together,” Kennerly wrote. “Instead of using those challenges to bring others down, taking the time to understand someone could mean all the difference. Your challenges may shape you, but they shouldn’t define you.”

That’s the message she and her mom will be sharing with people over the next few years, probably through high school — and something they’ll tell her brother Seth, too, who may also struggle with writing something he knows by heart. Just recently, he was diagnosed with Tourette syndrome.