From outcast to accepted (Tourette Syndrome)

Chicago Sun-Times ^ | July 1, 2007 | Jim Ritter

[Graybeard58]

Tourette syndrome made J.P. D'amico an outcast in school.

Kids didn't understand that J.P. couldn't help it when he made ear-piercing grunts, his head twitched uncontrollably or his eyeballs vibrated.

Even teachers ridiculed him.

"I was emotionally scarred," he said.

But for one week each summer, J.P. found a haven at YMCA Camp Duncan in Lake County.

It's the only specialized summer camp in the Midwest for kids who have the baffling neurological disorder characterized by sudden, involuntary movements and noises called tics. Kids come from all over the country.

"This is a community that will not treat them the way society has," Camp Duncan director Kim Kiser said. "We will respect and nurture them."

One day, J.P. was sitting by the swimming pool, alone as usual, when a cute girl came over and started talking to him. They made small talk for a while. Then, to his astonishment, she asked J.P. if he would like to go to a dance with her.

'A life-changing moment' "Every other girl I'd ever known just hated me," he said. "It was a life-changing moment. It's when I realized people will accept you and be willing to get to know you."

Last year, nearly 27,000 kids ages 7 to 15 attended Camp Duncan, near far northwest suburban Ingleside. In addition to regular summer camps, Camp Duncan offers 17 medical camps for kids with conditions such as diabetes, asthma, kidney disease, burns and Tourette.

The Tourette camp is much like Duncan's regular summer camp. Kids swim, do crafts, play basketball, paddle canoes, etc. But while they mix with regular campers, the Tourette kids bunk with one another. And most of their counselors also have Tourette.

They discover they're not alone. They make friends. They find out how other kids cope. And they are not ridiculed or disciplined for their tics. One camper repeatedly yelled the F-word in the dining hall. A regular camper would have been punished. But the Tourette kid wasn't disciplined, because he couldn't help it.

Stress can make tics worse. After trying to suppress tics at school all day, some kids' tics increase when they get home. But when kids' tics aren't suppressed, they feel less stress, and often wind up with less.

Worse than teasing: pity Kiser invited a reporter to sit in on a group discussion, which had one ground rule: "Tics are fine, but don't talk over anyone."

Every few seconds, someone would grunt, yelp or bark, but no one seemed to notice. They discussed the difference between school and camp. At school, it's easy to get picked on when you're the only one. But there's safety in numbers at Camp Duncan.

Not everyone gets bullied at school. Some kids are pitied and patronized, which can be worse. "It's annoying and creepy," said Andy Jones, 13, of Hendersonville, N.C. "I would rather have my entire school be mean to me."

It costs the YMCA about $1,000 for each of the 37 kids at this year's Tourette camp. Parents pay $495; fund-raising and YMCA subsidies make up the difference.

Tourette kids have more special needs. Many have associated conditions such as obsessive-compulsive disorder or ADHD. While Camp Duncan has about 10 regular campers for each counselor, it's only about two Tourette campers per counselor.

J.P. attended Tourette camp for three years, then became a counselor. He's 16 and lives in Oak Park. His tics have markedly subsided, as they do in many young people in their late teens and early 20s. Many campers look up to J.P. as their role model.

At Camp Duncan, Kiser said, "J.P. found his worth."

TOURETTE SYNDROME

Vocal tics: Throat clearing, yelping, sniffing, tongue clicking, barking. Fewer than 15 percent of patients blurt out curses, obscenities or ethnic slurs.

Movement tics: Eye blinking, head jerking, shoulder shrugging, facial grimacing, jumping, smelling, twirling about.

Possible cause: Abnormal activity of at least one brain chemical.

Incidence: About 100,000 Americans have full-blown Tourette. It is three to four times more prevalent in males.

Treatment: Drugs can control symptoms, although not all patients need them.

Cure: Unknown.

Named after: French doctor Georges Gilles de la Tourette, who described the condition in 1885.

[MacDorcha]

Good news about the kid-

Still need a picture of Tweek to make this a rounded out thread.

[Wheee The People]

A good woman will cheer up the darkest day.

I’m glad he found the help he needed.

[AnAmericanMother]

Famous sufferer:

Boswell's biography minutely describes his symptoms, and it's most likely that he suffered from both de la Tourette's syndrome and OCD. Of course nobody had any idea what it was in those days -- but he bore his affliction with great patience, as Boswell notes:

I am happy, however, to mention a pleasing instance of his enduring with great gentleness to hear one of his most striking particularities pointed out:—Miss Hunter, a niece of his friend Christopher Smart, when a very young girl, struck by his extraordinary motions, said to him, 'Pray, Dr. Johnson, why do you make such strange gestures?' 'From bad habit,' he replied. 'Do you, my dear, take care to guard against bad habits.'

[SandyEgo]

I have a nephew (about 9 yrs old)who was diagnosed with “ticks”...the mother, who is into holistic medicine, brought him to her doctor (who put him on a diet of all natural foods (she pretty much shops the vegt. aisle and goes home), and then a chiropractor, who adjusted his neck, and now the ticks are gone. Not sayin' it would work for everyone, but in this case, so much better than the medicine prescribed. Something to look into if you have a child affected...

[labette]

Reminds me of this man's story.