Wouldn’t change a thing

No dull moments found in lo­cal fam­ily as broth­ers live with Tourette’s

The Covington News - - FRONT PAGE - KAYLA ROBINS krobins@cov­news.com

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-yearold 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 transi- tioned 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

When you’re nor­mal, there’s noth­ing unique about you. —A.J. Dor­ough, 13-year-old boy with Tourette’s

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-yearold 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-to­day 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.”

Sub­mit­ted pho­tos /The Cov­ing­ton News

AJ and Gavin at camp.

A.J.

Gavin

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