SEATTLE — He stands in the batter’s box, his head on a swivel, jerking in every direction. He looks at the umpire longer than the pitcher, holds the bat in one hand and punches himself in the ribs with the other.
Somehow, fighting the full-blown episode of his Tourette’s syndrome, Kellen Webster sees the pitch he wants and plows it up the middle for a single.
And his father doesn’t know whether to laugh or cry, so he does both.
“He was doing what he loved and, selfishly, I was inspired,” a tearful Todd Webster said of the experience in 2012, the summer before Kellen’s junior year at Bothell High School. “I tell people all the time that it was the worst thing I’ve ever seen, but at the same time the best thing I’ve ever seen him do. … It was very uplifting.”
Leyton Thommasen’s tics are much more subtle, and many who watch him tend goal for the Kennedy Catholic soccer team have no clue that he, too, has the syndrome. His is a milder form, yet like Webster he has overcome obstacles to excel athletically and academically.
Together, they epitomize the motto splashed across the Tourette Syndrome Association website: “I have Tourette’s, but Tourette’s Doesn’t Have Me.”
They inspire family and friends, most awed by their accomplishments. They refuse to let the syndrome stand in their way and hope their stories will motivate others to compete.
One so insistent and irritating, you can’t suppress the urge to scratch it. Now imagine that itch inside your head. That’s how Thommasen describes his Tourette’s.
“I can’t scratch it by hand,” he said.
So, Thommasen twitches his head for relief — sometimes even on the soccer field — and it feels like a good fingernails-down-your-back scratch, at least for the moment.
Kellen Webster’s eyes grow wide at hearing Thommasen’s depiction.
“That’s exactly what it feels like, having that itch and the only way you can try to make it go away is to move it,” he said.
Both 18-year-olds also suffer from obsessive-compulsive disorder and attention deficit hyperactivity disorder, often sidekicks of Tourette’s.
Webster’s Tourette’s has improved drastically over the past year, through medications and a new behavioral treatment, although a back injury prevented him from playing basketball and baseball as a senior at Bothell High this year. Head movements are rare and his only tic seems to be elongated eye blinks.
His Tourette’s was diagnosed at age 5, when he began making loud humming noises.
Thommasen was about the same age when he displayed a verbal tic — a frequent clearing of his throat — and a preschool teacher once told his parents he was too disruptive to be in class. But it was just last spring that Mark and Denise Thommasen sought an official diagnosis for what they had already surmised and something Leyton controls on his own.
Just as Tourette’s varies in severity, so do the way parents deal with it, according to Dr. Geoffrey Wiegand, a clinical psychologist at Children’s Hospital in Seattle who specializes in Tourette’s and OCD.
“Nobody wants their child to have anything wrong,” he said, noting some parents might not notice subtle tics. “A lot of people will say, ‘They’ll grow out of it,’ and a lot of times that’s the kind of advice pediatricians are giving parents.”
As many as 30 percent actually do grow out of it, according to Wiegand.
“The unfortunate thing is we don’t know which 30 percent that’s going to be,” he said.
Denise Thommasen’s OMG moment came while watching Oprah when Leyton was in seventh grade.
He’d gone through a myriad maladies, from hearing loss (he once wore hearing aids) to peanut allergies to being hot all the time. It always seemed like one little thing after another. Denise never considered Tourette’s, until she watched an Oprah show featuring a boy who displayed many of Leyton’s characteristics.
“I watched that show, and it just hit me, oh my God, he has Tourette’s,” she said.
Mark wasn’t buying it, although he now admits he was in denial. “In the back of my mind, everything added up,” he said.
Leyton thrived in school and sports, especially soccer, and for the most part controlled his tics, although his neck and hand movements were particularly bad as he reached puberty, when Tourette’s tends to peak.
“You would have thought he was a third-base coach with all the tics he was doing,” Mark said.
But none of them, including Leyton, thought he needed any outside help. Only when he struggled a bit in a Spanish class last year did they decide to seek an official diagnosis. Students with disorders like Tourette’s often receive special considerations for taking tests, like additional time.
But once afforded that opportunity, Leyton turned it down.
“He decided he didn’t want to be treated any different,” Mark said. “He wanted to be like the rest of the kids.”
Leyton, a B-plus student who will attend and play soccer for Pacific University in Oregon, shrugs off his disorders and is genuinely more annoyed by his mother’s overprotective nature (she is a self-proclaimed mama bear) than the fact he has Tourette’s.
“I honestly don’t care,” he said. “I’m one of those people who likes to block things out.”
For a while, the Websters thought their son’s Tourette’s might be mild, too.
Most of Kellen’s verbal tics quieted down until he reached junior high, and then some mild medication helped.
He excelled in basketball and especially baseball, where the family roots run deep. His uncle, Cody Webster, was the star pitcher of the Kirkland Little League team that won the World Series in 1982, and his father was an all-state shortstop at Juanita High in 1984.
Bothell was a three-year high school when Kellen was in ninth grade, but freshmen were allowed to turn out for baseball and he made the junior varsity as a shortstop. He got called up as a pinch-runner for the playoffs and scored the deciding run when the Cougars upset top-ranked Jackson for their first state title.
His Tourette’s flared up occasionally, but he sailed through his sophomore year in high school as a starter in basketball and baseball. A 6-foot-3 guard, Webster flew onto the college recruiting radar by hitting eight three-pointers at the 4A state tournament, one shy of the record.
Then the wheels fell off that summer as his Tourette’s raged. His head nearly spun like a top and he punched himself black and blue. He clapped and clucked and barked and during one baseball game his mouth stuck open.
His parents had a neurologist on speed dial and Kellen tried multiple medications. He began working with Dr. Wiegand and became one of the first in the state to learn Comprehensive Behavioral Intervention for Tics, which ultimately worked wonders.
Kellen was able to play basketball — sometimes sinking three-pointers with his head turned away from the hoop — until he suffered three concussions, his balance a casualty of his meds. He returned for baseball, but quit batting part way through the season for safety reasons. He might get beaned not watching the ball.
The Cougars reached the regional tournament, when Kellen selflessly told his coaches the team had a better chance with someone else at shortstop as his condition flared again. They lost to Kentwood by a run.
Leyton Thommasen’s Tourette’s hasn’t affected his athletic abilities. Kellen Webster wishes he could say the same thing.
Tics have never made Thommasen miss a soccer ball and he is among the top goalkeepers in the state. And he has a role model in Tim Howard, goalkeeper for the U.S. National Soccer Team who has Tourette’s.
Webster’s coaches say he could play at least Division II baseball and/or basketball, when his condition is under control.
Dr. Wiegand said he believes sports can be therapeutic for Tourette’s patients, especially those with depression, like Webster.
“Physical activity and social activity are really the two [antidotes] to depression,” he said. “And for those not doing well in school, it gives them another area of their life where they can excel and base their self-esteem.”
But Webster admits one reason he didn’t push returning to the baseball team this spring, if his back allowed, was the fear his symptoms would rear again.
“I don’t want to sound overdramatic, but it was kind of scarring,” he said of the struggles. “I didn’t really want to risk it.”
Yet he asks for no one’s pity.
“It was hard for me to have the game taken away from me like that, with what I have, but my dad always says it will make me a better person, because everyone’s going to face adversity, and I face it a lot, which I think will make me a better person,” he said.
A month ago, Webster thought he’d give up baseball and basketball to attend Washington State University, but he recently reconsidered and might pursue both at Bellevue College.
“I’ve missed it,” he said.
A sister tends to have her younger brother’s back. Such is the case with Bailey Webster, 23, and Shey Thommasen, 21.
Like their parents, they are always on the lookout for anyone who might tease or mimic their brother, or even stare.
“That just doesn’t fly,” Bailey said.
Not with Shey either.
“When he was younger and someone would poke fun at him, I would always be there to say it’s not OK,” she said. “It just broke my heart, because he’s family. You just want to knock someone out.”
Their parents felt Leyton would be more protected in private school, where many students stay together year after year.
Any time he was in a new environment, Denise in particular made sure those around him knew about his Tourette’s, fearful even the slightest tics might be mistaken for some kind of drug habit. Throughout his interview for this story, she expressed concerns that the added exposure might cause him to be treated differently.
Leyton and Kellen are both well-liked at school and say they’ve never felt picked on or mistreated. Neither is thin-skinned.
Kellen considers his nickname, “Twitch,” an endearment from his friends.
And it’s a refreshing reminder that while these two young men indeed have Tourette’s, Tourette’s definitely does not have them.
Tourette Syndrome is a neurological disorder characterized by repetitive involuntary movements and vocalizations called tics.
The name: The disorder is named for Dr. Georges Gilles de la Tourette, a French neurologist who in 1885 first described the condition in an 86-year-old French woman.
More men than women: Males are affected about three to four times more often than females.
Numbers: It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder symptoms.
For teens: Most people with the condition experience their worst tic symptoms in their early teens.
Source: National Institute of Neurological Disorders
Distributed by MCT Information Services