XENIA — Dakota Wagner was simply trying to learn more about Tourette Syndrome so she could better understand what makes her tic.
Turns out the Spring Valley 15-year-old is going to be able to help others learn about it as well.
The Dayton Regional STEM School freshman is one of two from Ohio chosen to be a Tourette Association of America youth ambassador.
“Initially I wasn’t going for being an ambassador,” she said. “We were mainly worried about how kids would respond and how bad it would get. I was looking for materials to learn about Tourette myself. I thought it would be great to join, so I applied.”
The youth ambassador training will equip Wagner and prepare her to educate her peers and the local community on how to promote understanding and social acceptance of TS and its symptoms by presenting to schools, clubs, and community centers.
“I feel that if more people knew about Tourette Syndrome or tic disorders it would help not just me, but other people who are struggling and to help cope with day-to-day activities,” Wagner said in a release from the association.
Wagner was diagnosed with TS last April after a two-year misdiagnosis in sixth grade. She would make random gasping noises, which nobody could explain.
“We didn’t really know what it was,” Wagner said. She went to a doctor who performed what she called “unnecessary tests” that resulted in a diagnosis of Rumination Syndrome — a condition in which people repeatedly and unintentionally spit up (regurgitate) undigested or partially digested food from the stomach, re-chew it, and then either re-swallow it or spit it out.
But something didn’t seem right.
So last year Wagner and her parents, Penny and Will, went for a second opinion and she was told she had tic disorder. She originally lacked the duration of certain tics present with TS, but in April the official Tourette Syndrome diagnosis came.
Wagner’s verbal tics are rather tame compared to what many expect. She doesn’t make obscene gestures or randomly swear, known as coprolalia. That only impacts 10 percent of the TS population.
“Which I’m very thankful for that,” Wagner said. “They’re not as bad as some people are.”
However the motor tics are “really advanced when it comes to it,” Wagner said.
They range from a wink or a little hop to aggressive behavior toward her parents and sister, Taylor.
“It’s heartbreaking for us when you see your child unable to control their own movements or words,” Penny said. “When she throws food, spits on us, hits us or tables, we try to remove ourselves and remove the triggers the best we can to help her reset and gain control.”
Rebooting is a key for Wagner.
She said there are various techniques for calming the tics down including listening to music, riding a bike, taking a deep breath, or physical activity like softball.
The STEM school doesn’t have sports but Wagner is eligible to play for Xenia since she lives in the district. She made the varsity team as a freshman this year.
“Softball is a big let out for me because I usually don’t tic as much,” Wagner said, adding that if its a bad tic day, she will warn umpires and other players.
Fortunately, warnings aren’t needed at school. Her peers and teachers get it.
“They kids around me, they understand,” Wagner said. “They don’t make fun of it, which I’m very grateful for it. My teachers are very supportive. They’re very understanding. They help me when necessary.”
Wagner is among the lucky ones because many with TS or another tic disorder are teased and/or bullied. That’s a big reason Wagner wanted to become an ambassador.
“Spreading awareness ultimately leads to education and knowledge and prevents people from being in awkward positions and prevents situations where people are being bullied,” she said.
She isn’t stopping there, however. She used leftover wax from the family beehives to make lip balm, which she is using as another outlet to spread awareness.
Wagner named her small business Tic’d Off and it’s been a hit.
“It took off a lot faster than we really would have thought,” Wagner said.
But wait, there’s more.
Earlier this month, Wagner met with representatives from U.S. Senators Sherrod Brown and Rob Portman, U.S. Rep. Mike Turner, who represents the Dayton area, and U.S. Rep. Marcy Kaptur, who represents counties from Toledo to Cleveland, to discuss the importance of supporting funding for education and medical research for Tourette Syndrome.
It’s about increasing awareness and education.
That’s exactly how it all started for Wagner.
