DIANE MAKAR MURPHY Struggle brings success for man with Tourette's
Tourette's syndrome comes on as subtly as a blinking eye.
For Robb Arent, 27, of Boardman, it invaded his life at 5, causing him to compulsively blink, then thrust his arm, then clear his throat. It was, he recalled, so out of his control that had people not told him he was ticcing, he wouldn't have known.
In Tuesday's column, Robb revealed his rocky road to getting the neurological disorder diagnosed. Its cause is still unknown, and it manifests in tics -- repetitive vocalizations or movements. Up until he was 10, his parents, Phyllis and Lee Arent, searched for a reason for their son's ticcing and disruptive behavior in school -- behavior that earned him a seat in the Severe Behavioral Handicap (SBH) classroom despite the Arents' protests.
The eye doctor, family doctor and allergist had failed to offer a diagnosis, but a neurologist succeeded. With his diagnosis and medication that reduced the ticcing, the Arents hoped Robb could return to a regular classroom. Phyllis left the doctor armed with literature and enthusiasm. She told teachers about TS.
Some of what she told them was that TS does not have a typical barrage of symptoms. They can range from mild to severe debilitating ticcing. And she also argued for a better label than SBH.
It wasn't to be. For fifth and sixth grade, Robb was required to follow his frequently moving SBH classroom to the Jackson-Milton school district. He spent more than two hours each day riding the "little yellow bus."
Isolation: "He didn't make friends or bond with kids in the neighborhood," Phyllis said. At school, he hung around with the SBH kids.
It began a battle for Phyllis, trying to get Tourette's classified as "Other Health Impaired" rather than SBH. By the end of sixth grade, she got Robb into the regular classroom on a probationary basis. There he tried to control his ticcing, coming home to "explode" with the tics he had held back all day.
When Robb entered high school, Phyllis found she could either have Robb in SBH or in a regular classroom. There seemed to be no in-between. "We wanted extra services for him in the regular classroom," Phyllis said.
By the end of the ninth grade, the school sent Robb home to be tutored. His grades went from D's and F's to A's and B's. Although the grades were desirable, Robb felt isolated.
For his junior year, he was returned to the classroom. The second half of the year found him back home. For his senior year, Phyllis hired an attorney -- determined to stop his yo-yo education -- and fought to get Robb into a class for learning-disabled children.
"We fought and won," Phyllis said. "A week later, Miss Nancy Bare [the instructor] called to tell me they were best friends. She loved him." It was a tough climb to graduation, but Robb, with the help of Bare, made it.
Compulsions: Robb also suffers from obsessive-compulsive behavior, following what he calls "rituals," such as always carrying a brush, cigarettes and a pocketful of change. "I have to have it or I'll go nuts," he said. "I have to do things in the same order every day -- brush teeth, shower, take pills, must smoke a cigarette ..." He also compulsively bites or clips his nails, often injuring the skin circling his fingernails.
But even so, his TS is mild in comparison to that of others, whose vocal or movement tics can prevent them from even getting a job or caring for themselves. As for Robb, he is closing in on a degree in speech and communication with a minor in sociology from Youngstown State University.
Although he doesn't have a firm employment goal, advocating for the Tourette Syndrome Association is a possibility. In the meantime, he and his girlfriend, Jennifer Phillips, are expecting a baby. It's a mixed blessing -- Robb knows all too well there's a 50 percent chance his child will inherit the Tourette's gene.
For more information, visit www.tourettesyndrome.net.