'Open and free': Lakewood Youth Ambassador shares truths, myths about Tourette Syndrome

Kenny Richards wishes everyone knew as much about Tourette Syndrome as he does.

“It’s not contagious,” the 13-year-old Lakewood boy said. “It’s a brain disorder. It’s common with kids.”

In fact, the National Institutes of Health estimates that TS – characterized by vocal and movement tics – affects at least 100,000 Americans. But many people who have it remain undiagnosed. The condition often appears in childhood but can improve in late adolescence or young adulthood, according to the Tourette Syndrome Association.

As a designated Youth Ambassador for the association, Kenny wants to help educate kids and adults about his neurological disorder.

He and his mom, Carla, helped form a support group for kids with TS and autism. His younger brother Cody, 10, has an autism-related condition known as pervasive developmental disorder.

For Kenny, confirmation of his Tourette Syndrome diagnosis arrived just three years ago.

Carla confirmed that Kenny had tics such as head bobbing for a while growing up. Kenny said he was bothered by moments when his eyes would “go crazy.”

So when experts were finally able to give his condition a name, he felt a type of relief. When kids made fun of him, he had a reply.

“You can tell them it’s not your fault,” he said.

Kenny, who is finishing seventh grade at Hudtloff Middle School, loves math and wants to be an aircraft or spacecraft designer when he grows up. His dad, Jeffrey, is an Air Force veteran who now works for Boeing and serves in the Naval Reserves.

Kenny said his first year of middle school was so stressful that his mom pulled him out and homeschooled him for the year. Kenny felt misplaced in the special needs classroom, where he said the work wasn’t challenging.

“They thought because I had Tourette Syndrome that it was harder for me to learn, but it wasn’t,” he said.

His mom said she had to advocate for her son’s needs, but she said teachers were “willing to listen, to think outside the box.” This year, he returned to school and his grades improved.

Being named a Youth Ambassador also helped boost Kenny’s confidence. This spring, Kenny and his mom traveled to Washington, D.C., for a conference and training.

“It was just like our family,” he said. “There was a lot of noise and excitement. It was just a blast.”

He met other kids from around the nation who are dealing with TS.

“There was an automatic bond these kids had,” said Kenny’s mom. “It also made me realize I don’t have to get so stressed out over it.”

Kenny is looking forward to a summer of reading after school ends June 27.

But before that, he wants to visit an elementary school. Since becoming a TS ambassador, he said, he feels more comfortable talking about the disorder.

“I’m open and free,” he said.