FAMILY- Tackling Tourette's: Syndrome a challenge for students, schools<span class="Apple-converted-space"> </span>
Charlie, David, and Andy Juers
PHOTO BY WILL WALKER
A quick glance at David Juers reveals a handsome, tanned 9-year-old with sky blue eyes and a sweet smile. He answers a reporter's questions seriously and thoughtfully, mentioning favorite activities like soccer, Playstation, and playing with his pet rat. But despite his normal demeanor, some of his comments are heartbreaking.
"They hate me," David says of his schoolmates at Woodbrook Elementary School. "They think I'm crazy."
In fact, David is not crazy; he has Tourette Syndrome, a neurological disorder that causes uncontrollable tics, movements and sounds he cannot control. In addition to Tourette, he has also been diagnosed with Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder, Rage Disorder, and Oppositional Defiant Disorder– a laundry list of diagnoses that often accompany Tourette's and that have led to an even longer list of medications. Over the years David has taken Ritalin, Adderall, Strattera, Concerta for ADHD, the antianxiety medication Paxil, and two anti-psychotic medications developed originally to treat adult psychoses, but which are now often used to treat aggression (Risperdal) and tics (Clonidine) in children.
David currently takes the last two.
David's parents, Michael and Pamela Juers, say it took years for them to figure out what was happening with David, one of their three sons. (Andy is nearly 11, and David has a fraternal twin, Charlie. Neither has any disorder.)
Before he was two, David exhibited symptoms of a problem.
"David would want food out of the cabinet," says Pam Juers. If she or Michael said no for any reason– and she says that all the boys were fed well– David's reaction was fury.
"At two years old," she says, "he'd break doors off the cabinet to get food."
Despite those early warning signs, it wasn't until kindergarten that David's troubles really became apparent.
"He would act out violently," Pam Juers says. "This is when Tourette's was full blown, and we didn't know it. We thought he was a pain in the neck, and we treated him like that."
Early on, "He was trying to compensate for a lack of making friends by doing bizarre, freaky things to make kids laugh at him," she says.
In addition to seeking laughs, David behaved in ways that his mother admits were sometimes frightening.
"In second grade, he didn't make really good choices," she says, citing one time when he went toward another child wielding scissors.
"We still didn't know what was going on," she says.
After trying medication for attention deficit (which Juers says she's not convinced David actually has), he was finally diagnosed with Tourette Syndrome, and the behaviors began to make sense to his parents. According to the Tourette Association, as many as one in 200 people may have Tourette Syndrome, though the National Institutes of Health say it's much rarer, with only 100,000 people in the country officially diagnosed with the disorder.
Knowing what was afflicting him didn't make it any easier for David at school, however.
Because David's IQ is high, the Juers, who both work at the ACAC health club, say he has not qualified for special education services. They say they have asked for a "504," an education plan for people with disabilities that provides a child with certain educational accommodations. For children with Tourette Syndrome, such accommodations might include having a special place to go to express tics, or being allowed to take tests apart from classmates. Thus far, they say, the request has been denied because David's academic performance is too strong.
Woodbrook's principal, Dr. William Sterrett, declines to comment on David citing confidentiality laws, but he stresses that the school has a mission to meet every child's needs. "We are committed to seeing that all students can benefit from a pubic education," says Sterrett. "Each student is unique, and we will work with staff and parents."
Pam Juers says David's high intelligence coupled with his behavioral issues creates a nearly impossible situation at school: because of his medical conditions, he's unable to control his behavior at times, but he's frequently punished anyway. Last year, Juers says, David was suspended four times and was sent to the office many other times. Among the offenses: standing near another student's desk and breathing loudly.
His parents admit that David poses a significant challenge for his teachers, but they believe he has been unfairly stigmatized. The year after his diagnosis, he was suspended more times than the year before, they claim. They also say they met resistance from the school when they asked to show a video about Tourette Syndrome to David's classmates. They hoped that increasing other students' awareness would stop some of the taunting and bullying they say David often faces. They also hope that by going public in this article, they can help other local families who are dealing with Tourette Syndrome, since there is no local chapter of the Tourette Association.
If things are hard at school, however, the Juers say things at home can be even tougher. While David has learned to control his temper at school, his uncontrollable rage has continued at home. On several occasions, they say, they have had to call the police for assistance. Other times, when they have been out in public and David has become agitated, onlookers have called the police believing the parents are abusing him.
"It's hard. We've gone through losing our minds," says Pam Juers. In the past, she admits, both parents frequently lost their tempers in frustration over their son's behavior. But since beginning family therapy at UVA's family stress clinic, she says, "Now we understand this is something he has. You can't tell David, 'Just get over yourself.' Something happens to him. His face turns gray; his eyes won't focus."
There is recent hope for the family. Earlier this summer, they increased his medication and started David on a gluten-free diet. With that regimen, all of David's tics vanished. They say the diet is particularly difficult and expensive, and they are phasing gluten back into his meals, believing that it's the medication that has helped, although his mother says she's bothered by the side effects she notices from the Risperdal and Clonidine: he sometimes seems "flat" she says, and he sleeps a lot.
As a new school year begins, David and his parents are apprehensive about what is in store.
"I'm anxious for him," says his mother. She hopes David will have a teacher who is "really nurturing, really hand-holding, really someone who won't isolate him and make him sit in the front of a class– someone who doesn't bring him in the office every time he screws up."
She describes her son as "friendly, kind, loving and family-oriented." She wishes others could see past his disorder and give him a chance.
Does David think this year will be better?
"I think so," he says, nodding his head. "I hope so."
The Juers family with the children's pet rats
PHOTO BY WILL WALKER
David, Andy, and Charlie Juers get ready for a rat race.
PHOTO BY WILL WALKER
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