In many ways, unhealthy Christopher Maus is a typical teenager. The 15-year-old sophomore at Walker High School plays trombone in the band, cost enjoys basketball and Guitar Hero with friends, and studies tang soo do, a Korean martial art.
But, Maus, 15, has Tourette’s syndrome, a genetic, neurobiological disorder involving tics—movements or sounds that the body cannot control. Over the years, Maus said, he has been ridiculed by classmates and misunderstood by teachers.
In an effort to promote understanding about his condition, Maus has been giving presentations about Tourette’s syndrome to his classes since he was in the seventh grade. He’s also spoken to his church youth group and to an elementary school.
Last year, Maus became Louisiana’s first Tourette Syndrome Association Youth Ambassador, according to a news release from the association. He attended a three-day training program in Washington, D.C. While there, he met with local members of Congress to advocate on behalf of other children with the disorder. He is still the only youth ambassador in the state, his mother, Becky Maus, said.
Maus will be recognized in April by the Council for Exceptional Children with the national Yes I Can! Award. The award is given annually to 27 recipients from across the country who have demonstrated notable accomplishments despite their disabilities.
Maus was nominated in the category of self-advocacy. He was chosen as one of three recipients in the category, his mother said. He will return to Washington in April for the ceremony and hopes to meet with members of Congress again.
“The biggest word you can describe it with is random,” Maus said of having Tourette’s syndrome. His tics include nose wiggling and eye twitching.
During his school presentations, Maus said, he relates having Tourette’s syndrome to other medical conditions his classmates may be more familiar with as diabetes or attention deficit disorder. He also stresses that it is an inherited condition. People inherit Tourette’s syndrome in the same way they inherit eye or hair color, Maus said. Both Maus’ father and older brother have Tourette’s syndrome. They all take medication to help control their tics, but the medicine doesn’t eliminate them completely, Maus said.
In his presentations, Maus also reiterates that people shouldn’t make fun of someone else for being different.
Becky Maus said she wants people to know that her son is available as a peer educator and Tourette’s syndrome spokesperson. The mother-son team is also working with the national TSA to create a local nonprofit support group for the greater Baton Rouge area.
“It’s amazing still how little the public knows or understands about it,” Becky Maus said. “By the time you get your family and your best friends to understand your condition, then you have to move on to your peers and even teachers.”
The support group would be available to provide educational materials to schools and workplaces, dispel common misperceptions, raise awareness in the community, and most importantly, provide emotional support to families affected by Tourette’s syndrome, Becky Maus said.
“It’s been quite a journey for the whole family,” she said. “I’m glad Christopher has decided to speak up.”
The Maus family can be reached at firstname.lastname@example.org or through the Tourette Syndrome Association website at http://www.tsa-usa.org.