Columbia boy with Tourette's syndrome seeks understanding

COLUMBIA, Mo. -- In many ways, 10-year-old Mason Burke is just a normal kid.

His favorite activity is playing with Lego. He likes to play video games, such as a game based on the TV show "Swamp People."

But there is one thing about Mason that makes him stand out, sometimes more than he would like. Mason has Tourette's syndrome, a neurological disorder characterized by involuntary movements and vocalizations, commonly called tics.

Mason has some subtle tics, such as tapping, but his vocal tic, which is a loud screech, often draws attention when he and his family are in public. And people aren't always polite or understanding.

Just yesterday, his mom, Jill Burke, was still fuming about an encounter at Hy-Vee earlier in the day. Mason had a tic and screeched in the check-out line, and a lady in the next line told him to stop. Burke explained to the woman that Mason had Tourette's and couldn't help it, but the woman said she didn't care, the sound hurt her ears.

"It was so bad and so rude, the lady behind her apologized for her behavior," Burke said.

Although some people are kind and understanding, such as the principal and staff at New Haven Elementary, Mason's school, encounters with rude strangers are not uncommon for the family. Burke, Mason and McKenzie Bailey, Mason's 15-year-old sister, can tell many stories about unpleasant encounters.

Mason said it hurts his feelings "a little bit" when such incidents happen, and he hates it when people stare. If he could tell people a message about Tourette's, it would be "don't stare" and "don't say, 'stop it.'"

Burke has a message for people, too.

"Just for people to be more tolerant and not to yell out, especially when we say he has Tourette's," Burke said.

McKenzie's message took a similar tone. "Don't judge him. He's human, and just be respectful," she said.

The family agrees building awareness is essential to getting people to be more understanding toward people with Tourette's. It has worked wonders at New Haven, Burke said.

At the school, Principal Carole Garth has made it mandatory for staff to watch a 30-minute video about Tourette's. She also ordered several copies of the book "Tic Talk: Living with Tourette Syndrome," which explains Tourette's at an elementary level. At assemblies, Garth makes sure parents receive a flier explaining Tourette's and that they might hear Mason's vocal tic.

Burke said this has made a world of difference for Mason, who used to get in trouble at school before he was diagnosed.

"He went from being miserable to enjoying going to school. It's made a huge difference in his life," Burke said.

Garth agreed staff members have created "a nice little 'haven'" for Mason, but she wants to do better. She wants to make all of Columbia a safe haven for Mason. "It would be wonderful for the rest of town to be as compassionate as New Haven is," Burke said, although she isn't sure that is possible.

For now, the family is focused on smaller hurdles, such as summer school, when Mason will have to go to Shepard Boulevard Elementary. New Haven is not hosting summer school because of construction.

"I don't want the Shepard kids to go, 'You stop that,'" Mason said.

Beyond that, there is middle school in a couple years. Burke said she will talk to all of his teachers and hopes the principal is as understanding and helpful as Garth. In addition to New Haven, Burke said family and friends have been a big support once they were made aware of Mason's condition.

McKenzie said she wants to hand out T-shirts and bracelets to increase awareness.

"There is a Tourette's foundation. I want to make it bigger so people understand better," she said.

------

Information from: Columbia Daily Tribune, http://www.columbiatribune.com