PHOTO PROVIDED BY SHANE KOCH Delray Beach resident Shane Koch and his sidekick Callum. Koch is the keynote speaker for the Tourette Association of America Virtual Teen Summit Jan. 9.

“Different is OK” is one message a 16-year-old Delray Beach resident will share during the first Tourette Association of America Virtual Teen Summit, set for Saturday to show participants “what makes them special.”

Shane Koch was diagnosed with Tourette syndrome when he was 8. What started as little shoulder shrugs changed when he entered middle school with the addition of vocal ticks. 

“Middle school was rough. I dealt with bullying from students and teachers,” he said.

The vocal ticks were hard to overcome as they came without warning. Koch said he would feel it coming as a knot formed in his chest and pushed until it had nowhere else to go but out. A therapist helped him find different outlets, squeezing a stress ball, playing sports or focusing on something else, to get through the ticks.

Now a junior in high school, he does not get made fun of as much, but rather gets questioned about his neck or arm movements as he really does not make many vocal noises anymore.

“What helped me was humor. When someone made fun of me, I made it a funny joke. I will do it personally again, make the tick, to make fun of it myself. I don’t take it personally. I turn it over into a joke,” Koch said.

On Dec. 7, 2019, the teenage boy’s life changed when they adopted Callum, a Rhodesian Ridgeback mix.

“The day I got Callum, I fell in love with him,” he said, adding that his four-legged best friend can feel the ticks coming. “He will nudge me and distract me. He is my main outlet. He helps me so much. When I’m with him, they never come.”

The duo have a Tik Tok account, “CallumtheRidgy,” which has gathered 1.4 million followers since January who enjoy watching their videos.

“We make people laugh,” Koch said, which helps with his outlet of making people laugh.  “We post a lot of comedy videos.”

Koch was asked to be the keynote speaker by the Tourette Association of America Virtual Teen Summit ton Jan. 9, which has a theme of “Adjusting to Change.” The Virtual Teen Summit will be held at 11:30 a.m. on Zoom, giving teens an opportunity to connect with peers, discuss important topics, as well as have questions answered while receiving resources and learning about what TAA offers. Those interested can register at https://bit.ly/3mXDZAg.

The conference includes such topics as Mindfulness Activity, Resiliency and Depression Discussion and Activity, Vision Board Activity, OCD panel, Awesomely, Painfully Vulnerable, Navigating High School and the Keynote Address + Burning Questions.

“As the keynote speaker, I want to share my story, go more in-depth and show them what helped me and what might help them,” he said. “There are many options and there is nothing to worry about. Being different is OK. Different is OK.”

Tourette Association of America CEO and President Amanda Talty said the Teen Summit came about because once individuals are diagnosed with Tourette syndrome, symptoms get more intense and severe once they hit their teenage years.

“As you know, the teenage years can be challenging with all of the body changes, socialization issues and dealing with schools and all the challenges in that,” she said.

When having those challenges compounded with chronic conditions every day, Talty said they felt they needed to give these teenagers a unique forum where they can discuss issues that are relevant to them.

Also “have the community element where they connect with one another in a way where they feel they are not alone in the world and can be open and honest of things they are dealing with in their young lives,” Talty said.

She said Koch was chosen as the keynote speaker because of the way he embraces TS and works hard to really showcase and advocate for  Tourette syndrome.

“He embodies what we hope all teens living with the condition will do. To be more open about the condition and talk about it in an open forum to put a face to the condition and educate what it is and more importantly what it is not,” Talty said, adding that the hope is all teenagers will find a platform to be their most authentic self, while being true to themselves without hiding from the public.

Through the association there are many support groups around the United States with one located in the Lee/Collier county area.

Sean McCullough, who leads the Lee, Collier County Support Group, said when the Tourette Association Florida Chapter broke down into separate counties, Lee and Collier was combined as they “don’t have a lot of diagnosis down here, or parents are quite silent.”

“Broward County will meet once a month, Pinellas County will meet every other month. We don’t meet at all. It is really by demand. What we get calls for here are more for parents looking for networking and they are in need of services of sorts. What we do is we meet on a one-on-one basis with the parents, or whoever is reaching out. I will personally meet with the parents and find a mutual place, a coffee shop, and talk about education. A lot of times I don’t hear from them again,” McCullough said. “The Tourette community kind of keeps to ourselves. The Tourette syndrome is so different. It’s not something you can publicly advocate and understand. When you say Tourette syndrome it is a great big stereotype, parents feel that.”

With that said, over the last five years, he said he has seen a big uptick with outreach for parents on private social media.

“The support group is a networking and resource depot. It’s there if they need it. This is no pressure. They have to reach out to us and that is what we are here for,” McCullough said. “This was started with parents. Parents have helped me and that is why I have a much better understanding and got through.”

His son was diagnosed with TS and is doing great. McCullough said although it has not been a pleasure ride, his son has found his outlet, playing the piano, which helps in controlling his Tourette’s.

“Every patient finds their own release. My son has music. He couldn’t live without his piano,” he said.

Those looking to find more information about the support group can email McCullough at cptsean@gmx.com.