Brandon O’Leary becomes comfortable talking about his neurological disorder with the help
of New Jersey Center for Tourette Syndrome Peer Advocate Tommy Licato.
SOUTH PLAINFIELD – It wasn’t long ago Tommy Licato refused to talk about having Tourette Syndrome – a misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 kids. As a sixth-grader, Tommy never considered advocating on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) or the TS community in general.
Things have changed. Now in eighth grade, Licato is a National Youth Ambassador and a pillar of NJCTS’ Peer Advocate Program, which utilizes teenagers and pre-teens to present a power-point message about Tourette Syndrome to elementary schools in all corners of the Garden State.
On November 27, Licato gave one of these presentations to fifth- and sixth-graders at Grant School. Prior to beginning, Tommy discovered that sixth-grader Brandon O’Leary also had TS, and like Licato once was, Brandon, too, was afraid to tell anyone about it. But as O’Leary intently listened to Licato’s morning presentation, something began to change – he become emboldened, a desire burning within him to tell others he, too, had TS and no longer was scared of it.
Following the presentation, Tommy asked the crowd of students if they knew of anyone who has Tourette. When no one answered, Tommy replied, “There’s a really cool kid in your class who has Tourette, and his name is Brandon.” From there, it was easy – Brandon took part in the afternoon discussion at Tommy’s side.
“I had tears in my eyes because he just went up by Tommy and started talking, like he had done it before,” Tommy’s mother, Karen Licato, said of Brandon. “I thought Brandon did really well for someone that didn’t want anyone to know before that.”
Brandon’s mother, Simone O’Leary, also was in attendance and couldn’t help but smile when Brandon helped Tommy answer questions such as, “Do you tic when you sleep?” “Does having TS bother you?” and “Do you tic all the time?”
“I was extremely proud of both boys. I thought Tommy did a wonderful job of making Brandon feel comfortable enough to speak up and answer questions. I was so proud of Brandon to be as open about something as intimate as this so quickly – in the course of an hour,” Simone O’Leary said. “Brandon moved from a place where, every day, I didn’t know what to expect to a place where he is doing things he never did before because he is so much more comfortable within his own space.”
Licato, who got an e-mail from the Grant School principal thanking him for his advocacy work, also has been a part of NJCTS’ Patient-Centered Medical Education presentations to pediatric and family practice resident physicians at Goryeb Children’s Hospital in Morristown and JFK Medical Center in Edison, read a book about TS to children at the South Plainfield Public Library, and helped present a Wish Upon A Hero grant of an iPad to an 11-year-old Manahawkin boy with TS.
Read more about what Tommy has accomplished by visiting the NJCTS Newsroom. And if you’re a parent of a teen or pre-teen with TS who wants to get involved in the Peer Advocate Program, please call 908-575-7350 or e-mail Education Outreach Coordinator Melissa Fowler at firstname.lastname@example.org. More information also is available on the TSParentsOnline blog.
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New Jersey Center for Tourette Syndrome and Associated Disorders, Inc.
Collaborative partnerships for the TS community.