April Thibodeau and her daughter Nessa, 12, pose Friday in their home in Lewiston. The two have started a support group for families dealing with Tourette syndrome. The group meets virtually, but they hope to move to in-person meetings when it is safe. Andree Kehn/Sun Journal
LEWISTON — When April Thibodeau’s 12-year-old daughter, Nessa, was diagnosed with Tourette syndrome last November, Thibodeau scrambled to find someone else in Maine, anyone, who had the disorder and could talk her through it.
Even with the internet at her disposal, she found exactly zero people.
“I was at my wits’ end thinking, ‘I need help,'” she said. “I was like, there has to be something out there. We can’t be the only (family) in Maine that has Tourette. That can’t be.”
So Thibodeau founded what she believes to be Maine’s only support group for children and adults with Tourette syndrome.
“I said, ‘We’re going to find these people in Maine who need help,” she said.
Tourette syndrome is a disorder involving physical or vocal tics. It’s usually diagnosed in young children or teenagers. According to the Tourette Association of America, the disorder is not rare, with estimates saying one in every 160 children between ages 5 and 17 in the United States has Tourette syndrome.
That means Thibodeau’s daughter certainly wasn’t alone when she was diagnosed, even though she felt like it.
“My daughter was like, ‘Am I the only one?'” Thibodeau said. “And I’m like, ‘You are not the only one.'”
Looking back, Nessa, an outgoing girl who played the violin and took advanced classes, showed symptoms long before her official diagnosis, including anxiety, depression and an ongoing sense of shivers down her spine. Her tics started in September, when she found herself clapping her hands or banging on tables. By Halloween she was hitting herself, making hooting noises, repeating phrases, and cursing — all tics she couldn’t control, even if some adults weren’t so sure about that.
“I was thinking that she was kind of making things up, because that’s what it seemed to me — she was clapping her hands on purpose,” Thibodeau said. “It wasn’t until she started going ‘hoot, hoot, hoot’ that I was like, ‘Hmm. Why would she be doing that?'”
Nessa’s pediatrician referred the family to a neurologist. The neurologist quickly diagnosed Tourette syndrome.
Thibodeau found the Tourette Association of America online and it offered some resources but none local. When she reached out for more information, she said, she was told the state once had a support group, but it disbanded years ago after the group’s leader left.
If she was going to get support, Thibodeau decided, she was going to have to organize it herself.
She got instructions from the association about creating a chapter in Maine. She started a private Facebook group and a public page, then spoke to radio station WJBQ about her mission. That story prompted 11 families to contact her.
“Whoom, they just came on. I was like, ‘Oh, there you are! You do exist!” she said.
The group met for the first time — virtually — this week. Some are adults with the disorder, some are parents with kids who have it. Some have Tourette syndrome and are raising kids with the syndrome. They span the state, from Wells to Fort Fairfield, Lewiston-Auburn to Oxford County.
The group is still getting organized, but Thibodeau hopes to meet once or twice a month and have one outing a month for families.
“They can be normal kids with each other and not be afraid, ‘Oh, I have to hide my tics,'” she said.
She also hopes the group will work to raise awareness of Tourette syndrome in Maine.
Thibodeau has no specific size in mind for the support group — 11 people or 100 people, she’ll take anyone who wants help.
“As many families as there is,” she said. “If we can find them all, we’ll find them all.”
Send questions/comments to the editors.
