Mickey And His Family Help Others Understand Tourette Syndrome

Posted by the Asbury Park Press on 04/27/07





Despite myths about the inevitability of schoolyard teasing, children aren’t born with an inclination to taunt one another, says Brick resident Eileen D’Andrea, whose 16-year-old son Mickey has what could be considered a very tease-able disorder.


“I don’t think it’s innate,” she said, because “once they understand his condition, the kids are very receptive and supportive. It’s the adults who can’t handle it.”


Mickey has Tourette syndrome and obsessive-compulsive disorder, both neurological disabilities that can produce some unusual behaviors — the sudden involuntary facial, arm or limb movements and vocalizations — or tics — of Tourette, and the excessive counting, checking or other repetitive activities of OCD.


But Mickey’s twitches and noises generally don’t alarm his peers because many have known him all through grade school, and they’ve been educated on the disorders.


Every year, D’Andrea delivers a packet of information on Tourette and OCD to the teachers. And every year — following a tradition that began in kindergarten — Mickey stands up in front of his classmates and tells them about his tics.


“The kids are wonderful,” D’Andrea said. “They go . . .


“Oh, OK, I wondered why you were doing that.’ ”


Tourette has joined autism as a silent epidemic, with one in 200 children in the state affected by the disorder, according to the Tourette Syndrome Association of New Jersey.


Citing a recent Danish study that found significant increases in autism, hyperactivity and Tourette syndrome, TSANJ Executive Director Faith Rice said the study highlights “the growing need for support and services for children and families affected by these disorders.”


Tourette syndrome and OCD often occur together; both are believed to have a genetic link and may be triggered by a brain injury. Mickey’s moderate-to-severe case is likely related to a subdural hematoma — a blood clot on the brain — that put him in intensive care the first two weeks of his life, his mom said.


He was diagnosed at 4 years old, but D’Andrea noticed the tics earlier, “probably because I had tics when I was young,” she said.


Mickey’s tics and OCD, at least in school, tend to be more troubling for him than for others without Tourette.


“His OCD is so bad, he can’t get through a doorway without banging against it,” his mom said. And he can’t stop, in OCD terms, until “it feels right,” which could take up to 15 minutes.


For Mickey’s safety, all the doorjambs have been removed in the D’Andrea home where he lives with his mother; father, Dennis, a teacher at Brick Memorial High School; and 13-year old sister, Kelsey.


Because high school students must change classes frequently, D’Andrea and Michele Hawkes, the paraprofessional who accompanies Mickey in school, devised a way to bypass the problem.


After arriving at Brick Township High School, Mickey climbs into a wheelchair and Hawkes whisks him through the doorways and also down the halls, so he can’t bang his head against the lockers, another OCD compulsion.


But after being wheeled into the gym, he jumps out of the chair and runs over and plays volleyball with the others, D’Andrea said: “I realize how bizarre that must look.”


Sometimes he gets out of the chair and carries it down stairs, “which must really start the rumor mill grinding,” she said. “But Mickey can laugh about his tics, which makes other people more comfortable.”


Another troublesome tic involves hearing certain sounds or words that can trigger loud vocalizations. Because school-bus radios may randomly broadcast the offending sounds, Mickey’s mom drives him to school and back.


Mickey’s vocal tics, his mom stressed, are not profanities. Despite a common misperception, only a small percentage of people with Tourette have coprolalia, which involves the use of profanities.


And although he can read, like others with the double whammy of Tourette and OCD, Mickey’s tics and compulsions interfere “to the point he loses his place and has to go back and start over,” D’Andrea said. She reads him his homework every night.


Writing presents the same challenge, so Hawkes takes notes for him at school.


“Michele and I have a running joke that we could probably win at “Jeopardy’ because we’re always doing schoolwork,” D’Andrea said.


Mickey is tested orally on his understanding of the material and is an honor student, his mom said. Math is his best subject. “He can’t write it down, so he calculates in his head. It’s his way of compensating.”


His prescribed medication only partially controls the disorders; another school accommodation allows him to leave the classroom with his aide, from time to time, to express tics.


D’Andrea suspects Brick schools are more accommodating than most. “I worked for the Tourette Syndrome of New Jersey help line for many years, and the main complaint I heard was the schools would not work with their kids.


“We are extremely lucky that the school works with us. Over the years, we’ve had some phenomenal teachers. Teachers model the behavior for the entire class. If the teachers show it doesn’t bother them, the kids will follow suit.”


Mickey, a sophomore, said he enjoys high school, particularly gym, math, origami and ceramics classes.


Still, “kids his age who don’t know him are afraid when they see him ticcing,” said Hawkes, Mickey’s aide for the past five years. “They don’t know what to expect. It can affect his social life tremendously.”


Mickey, however, handles the students beautifully, she said. Those who react badly to his tics will often be granted a second chance.


“Mickey’s just a great kid,” Hawkes said. “Once you take that fear away, when you get to see him as a regular kid, you realize he’s bright and funny and fun to be around.”


Eileen D’Andrea also hopes to increase awareness by urging the school system to offer training sessions to paraprofessionals, cafeteria workers, bus drivers and janitors as well as teachers and administrators, she said.


Linda Walls is a parent and grandparent of people with disabilities. Write to her at the Asbury Park Press, 3601 Highway 66, Neptune, NJ 07754, or e-mail doable@optonline.net