by Morgan Smith
Eleven-year-old Kevin Wholey is thankful for his older brother Grant.
The two are seemingly average teenage boys. Kevin a sixth-grader at Jay M. Robinson Middle and 17-year-old Grant a junior at Ardrey Kell High. Kevin does gymnastics; Grant plays lacrosse.
But these brothers have a bond that goes much deeper than most – it’s not unusual to catch Kevin at a gymnastics meet rolling his neck, or Grant shrugging his shoulders as he scoots down the field. Both boys have Tourette syndrome and as Kevin’s tics continue to get worse and more frequent, he said having Grant around really helps make the disorder easier to deal with.
“It definitely does help – just by seeing (Grant) have his tics and how he can control it, I can control it just as well as he can,” Kevin said.
Tourette Syndrome is a neurological disorder defined by multiple motor and vocal tics, something Grant has been dealing with since the second grade. The disorder typically affects children and teens around the age of puberty, and thankfully for Grant, his symptoms are not as severe as they used to be. But for Kevin, sixth grade has been the toughest year yet. And with the added common misunderstandings of the disorder, bullying and odd stares can sometimes be frequent in the boys’ lives.
“It’s a misunderstanding where the bullying comes from because people think that people with Tourette syndrome are weird, like ‘Why do they act that way?’” Mary Wholey, the boys’ mom, said.
Grant’s tics were much more severe than Kevin’s, Mary said. Through middle school, Grant experienced many tics at one time – twitching his fingers, shrugging his shoulders, rubbing his eye, blinking of the eyes, constant swallowing, a large leg tic and clearing of the throat.
Sometimes the tics were so severe Grant couldn’t do his homework, read or write. He couldn’t go to movies without people telling him to “shut up” and the family would frequently avoid restaurants to avoid stares, Mary added.
“It’s actually really tough to handle, all the different types of tics and everything,” Grant said. “It just gets really bad when you try and hold them in – you just have to keep on ticking and express what they are.”
Kevin experiences tics like rolling of his neck, sniffling and other internal tics he said that are hard to explain.
And as Kevin begins to jump some of the same hurdles with the disorder, Grant wanted to help his brother out in a greater way, hoping to help stop bullying and break myths about the syndrome. Although the disorder for Kevin hasn’t been as challenging so far, Grant said he knows Tourette syndrome is still hard for his brother to deal with.
That’s why Grant recently applied and was accepted as a Tourette Syndrome Youth Ambassador for North Carolina, where he will have the opportunity to spread education and awareness about the disorder in the community. Grant and his mom will travel to Washington, D.C., in April to attend a two-day training session, where Grant will get tools and resources to go out to schools, clubs, churches and other community groups. He also will get the chance to speak to Congress about his personal story and advocate for support for funding and further research on the disorder.
“I felt like it would be a great experience to do and try to help out other people” with the disorder, Grant said about the program. People have to understand what the disorder is before they can understand what he brothers go through, he added.
Grant said he hopes his participation with the program will help break myths about Tourette syndrome and also help people have more tolerance for tics that people can’t control.
“I’m really excited. At first I wasn’t sure… but I think I’ve built a lot of confidence to actually go in front of class, speak to students and tell my story and educate them on what Tourette syndrome is and is not,” he said.