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Wouldn't change a thing: Life with Tourette's
No dull moments found in local family as brothers live with Tourettes

The truth about Tourette’s

- 220,000: Estimated Americans living with the most severe form of TS
- 1/100: Estimated Americans exhibiting mild symptoms
- 10: Percent of people with TS living with coprolalia, the need to utter cuss words or other socially inappropriate words and phrases

There’s a summer camp at Fort Yargo State Park in Winder that, at a glance, is just like any other.

A.J. Dorough, a 13 year old from Covington, spent his time at the week-long camp in July boating, fishing, going down the water slide, learning archery and playing bass in the talent show. He went to the final dance for the fourth year in a row with his girlfriend, Kristin Moorehead, 13, who lives in Florida.

But a closer look reveals interactions you may not find at any other summer camp.

A.J.’s neck and head jerks back and forth uncontrollably, and sometimes he grunts loudly while having to punch the air or a wall. A camper often falls down without warning, unable to move a limb or muscle in his body. One counselor pursues her sudden urges to hug someone.

Because — although the activities and the goals are the same — Camp Twitch and Shout is not like any other.
The camp, which was recently profiled by the Associated Press, brings together kids ages 7-17 who have Tourette Syndrome (TS), a neurological disorder characterized by involuntary, repetitive vocalizations and movements, or tics.
“The big goal is that camp is all about getting them the typical camp experience, just with the support and understanding they need to get through the week,” said Tricia Kardon, executive director as of 2007, camp administrator and nursing coordinator.

Kardon’s son, now a 19-year-old sophomore at the University of Georgia, has TS, and his life-changing camp experience led her to help start Camp Twitch and Shout.

About 170 kids attended Camp Twitch and Shout this summer, with around 117 of them returning from previous years. Their tics can range from mild to severe, starting with eye blinking and throat clearing and potentially developing into full-body tics that physically endanger themselves or others.

“A.J., you can see him, he struggles with his symptoms sometimes,” Kardon said. “So for him to be at camp and struggle but still participate in all of the activities and be a part of the group and make friends, he becomes a positive influence on the others. And Gavin is just one of those sweet kids who everyone loves.”

“He went home and was a completely different kid,” said Alissa Dorough of her oldest son. “He came back and said, ‘Mom, I like my Tourette’s.’”

Shopping for the humor in it all

According to the National Institute of Neurological Disorders and Stroke, about 200,000 Americans have the most severe form of TS, and as many as one in 100 have milder symptoms. Males are affected about three to four times as often as females, and while TS can be a chronic condition that lasts a lifetime, most symptoms are first noticed in childhood, with the worst tics peaking as the person goes through puberty.

Alissa and Tim Dorough have three children. Alexis, 15, is a sophomore at Alcovy High School. She has not been diagnosed with TS. A.J. just started his freshman year at Alcovy, and his tics have been getting worse. Gavin, 6, is in third grade at Oak Hill Elementary School and has been going to Camp Twitch and Shout for two years. His tics are still mild.

Alissa said they try to keep humor in the brothers’ conditions. Like when Gavin had a burping tic.

“I hated that one!” Alexis said.

The whole family was in the car, and Gavin just couldn’t stop burping. So everyone started burping along with him.
Or when A.J. would “tic shop” at camp, coming home with a variety of new tics that other campers had, a common result of kids with TS being in close proximity to each other for extended periods. One time, he came home repeating the phrase, “Yo, my name is Greg.” Alissa had to email his teachers to make sure they knew A.J.’s name was not, in fact, Greg.

Or when A.J. came home after camp this July with a punching tic that required him to yell while he hit a desk or wall or couch. His sister and mom would be in the living room and suddenly hear a loud grunt and thud, to which his mom would answer with, “You don’t say!” or, “Preach it!”

“It’s made him who he is”

But A.J.’s punching tic didn’t go away as quickly as the others he “shopped.”

Last week, A.J.’s symptoms transitioned to moderate within 48 hours, including a three-hour long episode where he couldn’t stop “ticcing.” He had to go home from school in a wheelchair because he couldn’t stop violently shaking.
“It’s hard on us as parents because we can’t do anything for him, except take him to the neurologist’s office and pray,” Tim Dorough said.

A.J. had severe respiratory problems as a baby, almost leading to a diagnosis of cystic fibrosis. He was sick for the first 15 out of 18 months of his life.

The night before A.J. could not finish his day at school, he was up all night with tic attacks. He would awake to uncontrollable, harsh shaking before falling back asleep until the next attack. All his siblings and parents can do is rub his back and sit with him. Sometimes, his mom scratches his head.

“His sister would be sitting there crying because she just wants to make her brother feel better,” Alissa said. “It kind of makes you feel helpless. You kind of feel alone.”

Tim said one of the most terrifying tics for a parent to witness is the paralyzing tic, when the person suddenly collapses and cannot move. Or the pseudo-seizure tic, where it looks like the person is having a seizure but only experiences the physical movements of one.

Rage episodes are also common, where A.J. suddenly finds an “unbelievable power” and lashes out at those “he feels most comfortable around.”

“We never know when things are going to change,” Alissa said.

Tim has epilepsy, and he said he prayed when he had kids they wouldn’t have to go through the same thing. A.J.’s medications currently include two pills each night and one anxiety pill as needed.

“But God always has a plan,” Tim said. “It took me years to accept that, and it almost cost me my marriage.”

But he said when you have a bad thing, you have to make something good of it.

“(A.J.) having Tourette’s,” Tim said, “it’s made him who he is, and I wouldn’t change it.”

A boy not like any other

And who is he? He’s a 13-year-old boy.

He said he likes acting, developing video games, riding his bike, listening to music and reading. His favorite book is currently “The Perks of Being a Wallflower.” He and his siblings like playing with their dog, Sam, a 7-year-old boxer. A.J. also likes video chatting with his girlfriend. During his most recent tic attack, she helped talk him through the night.
His mom said one of the first things people ask her when they learn her sons have TS is if they shout out obscenities. She said she often has to tell people that no, her sons don’t have that tic. In fact, only about 10 percent of people with TS have coprolalia, the need to utter socially inappropriate words.

The next reaction is to ask if her sons have learning impairments. Actually, her response goes, he is 13 and in ninth grade, so he is ahead a grade. A.J. missed the cutoff by five days, but his parents fought to get him ahead.

And it’s not just faceless numbers in the crowd who deal with TS on a day-to-day basis. Tim Howard, the goalie who made a record number of saves in the World Cup this summer, has TS.

Alissa writes a blog called “What Tourette’s Has Taught Me” to tell her and her family’s story and spread awareness, referring to A.J. as Monster Man, Gavin as Little Man, Alexis as Angel Baby and Tim as Georgia Boy.

“It’s not controllable, and it’s not contagious,” Alissa said. “To the people who don’t know about TS, I would say there are many reasons why people do things differently. Take the time to ask questions to understand.”

A.J. said he’s not really ashamed of his TS, and his friends are all used to his tics.

“When you’re normal,” A.J. said, “there’s nothing unique about you.”