Connor and Country Music: Raising Awareness for Tourette Syndrome
Country music is like medicine to my 9-year-old son. Sometimes when he’s having a bad day or if he’s been bullied, he’ll come home and listen to the music on his tablet all afternoon just to feel better.
Connor was diagnosed with Tourette syndrome when he was 7 years old. We noticed Connor’s tics about two months after his grandfather passed away. It started with him swinging and stretching his arms. Next came jumping and hopping, followed by squeaking (known as vocal tics). They got to be so intrusive and physically painful that he would ask me to take him to the hospital during flare ups.
This year has been particularly rough for him, so one night in June I decided it would be a good time to take Connor to his first country music concert. We saw Brett Eldredge’s show at the Riverbend Music Center. Connor was so excited that he made a sign to take with him. The sign was in reference to Brett’s celebration of his song, Beat of the Music, hitting No. 1 on the charts. While performing, Brett saw the sign and invited Connor up on stage to sing that song together. It was an amazing experience for Connor!
The live, impromptu performance did wonders for Connor’s confidence after the night of the concert. He became a little more talkative and a little less shy and self-conscious around others. Singing country music on stage with one of his heroes was truly like medicine to my son; however, it was not a magic cure. There is no magic cure for Connor’s Tourette’s, but there are things we do to help him with it.
Since Connor started seeing Dr. Donald Gilbert at Cincinnati Children’s, our family has been learning more and more about what to expect with his Tourette’s. We found out that stressful events, like a death in the family, are one of the most common triggers for the disease. We also learned that, like many children who also have the same condition, Connor’s obsessive compulsive disorder (OCD), ADHD, and anxiety are likely related.
Talking about his condition and watching videos about other kids with Tourette’s seems to help him (HBO’s documentary, “I Have Tourette’s but Tourette’s Doesn’t Have Me” is his favorite). We have been managing Connor’s condition with medication, physical/occupational therapy, and leg braces to keep him from standing on his toes. However, what we struggle to manage is how others react to and interact with Connor, especially his peers. Connor is often bullied and picked on by kids who don’t understand that he cannot help himself, so we try to explain it to them like hiccups – no matter how bad he wants to control his tics, he can’t.
Just like the sign he made for the concert read, Connor is incredibly strong and brave – strong and brave enough to perform in front of hundreds of people with the man who swam with the sharks. But I don’t think he – or any person with Tourette’s – should have to rely on his bravery and strength to fend off the jokes, snickers and sneers. If nothing more comes from Connor’s 15 minutes of fame, I hope that by telling his story, we can at least raise some awareness for his condition and increase the public’s understanding and perception of Tourette syndrome for all those who’ve been diagnosed.
Editor’s note: Not long after the Brett Eldredge concert, Connor also got to perform live on stage with Luke Bryan (pictured below), another one of his country music heroes. Read the story here.