SOUTH PORTLAND – On a bright Thursday morning in Bug Light Park, with his cousin Owen Davis looking on in wide-eyed amazement, South Portland’s Theo LeBlanc gives a flick of his wrist and makes the playing card in his hand seem to disappear.
Again and again he performs the stunt, which would be an impressive feat for any fifth-grader. But there’s something about LeBlanc that makes the trick especially noteworthy. LeBlanc has Tourette syndrome. And to perform his magic, he must focus all of his attention on controlling the bodily tics and involuntary vocalizations with which he is afflicted.
Sleight-of-hand might seem an odd career choice for someone who can’t always control his hand movements, but LeBlanc wants to be a professional magician when he grows up.
Another father might discourage his son, or maybe steer him into a vocation with a higher chance of success. But as Justin LeBlanc looks on, it’s clear from his beaming smile that he has no intent of holding Theo back in any way. Not that it matters, he jokes, he probably wouldn’t be able to, even if he were so inclined.
“He doesn’t care,” says the older LeBlanc, with a smile. “He’s made up his mind, he’s going to make it happen.”
And with a flick of the wrist, another card disappears, and the growing crowd gives a cheer.
Still, Justin LeBlanc says he knows his son is entering a time of transition. The 10-year-old will transfer next year from Brown Elementary School to Mahoney Middle School, and that means the beginning of a process all kids go through, of finding a place in the wider world after a childhood of shelter and care. It can be a difficult time for anyone, but even more so for someone who is evidently different.
“Theo was diagnosed a long time ago, but 2013 has sort of been a year to, if not embrace it, to do something about it,” said Justin LeBlanc.
The key, both LeBlancs agree, is to strive for acceptance by first raising awareness. Since March, Justin LeBlanc, 42, has been training to run the inaugural Dopey Challenge, a series of four runs – a 5K, a 10K, a half-marathon and a full marathon – staged through four days at Walt Disney World in Florida. The event, held from Jan. 9-12, is a fundraiser for the national Tourette Syndrome Association and Justin LeBlanc has earmarked the $5,000 he hopes to raise for the association’s ambassadorship program, which Theo hopes to join in a couple of years when he is old enough.
“It’s a program where young people go out into the community and tell people what Tourette’s is and what it’s like to live with it,” said LeBlanc. “They basically try to demystify it.”
“It’s a neurological disorder with a chemical imbalance in your mind,” pipes in Theo, proving that he already has the education piece down cold.
And as readily as Theo explains what Tourette’s is, he can just as easily say what it is not. For example, he notes, it is not the disease as it exists in the popular consciousness, in which victims scream out swear words at inappropriate moments.
“Less than 10 percent of people with Tourette’s do that,” says Theo LeBlanc. “For me, it’s a thing where I clear my throat a lot, and that interrupts my speech. And then I move in ways that I can’t control.
“At first, it was a little frustrating, because people in school would say what I was doing was annoying, but they didn’t know that it annoyed me way more than it annoyed them,” he said. “Imagine always having to try and turn your neck or something else to compensate for something your body is trying to make you do that you don’t want it to. Imagine that you’re the one making these noises, and you don’t want to and being annoyed with yourself that you’re being annoying to others.”
And, if you really want annoying, says Theo, try reading a textbook that your head keeps bobbing around uncontrollably, making it nearly impossible to focus on the page.
“What’s hardest,” says Theo LeBlanc, “is this particular tic I have where all my muscles seize up and I make a loud chirp, like, ‘YIP!’ That’s hard because people think I’m doing it on purpose to get attention.”
Far from it, LeBlanc says he will often go to the bathroom just so he can be alone and relax for a moment, allowing his body to do what it wants without the constant effort of fighting against it.
“I’m nervous as a father,” says Justin LeBlanc, an attorney at LeBlanc and Young, a small estate-planning firm in Portland. “The teachers and staff at Brown Elementary have been amazing and very supportive. But this is a condition that’s not really well known and can be difficult to see.
“I worry about when he gets into the older grades, being teased and bullied,” LeBlanc said. “If I can get the word out, and people can understand that he sometimes flails and he makes noises and he can’t help it. That’s what this is.”
One issue, says LeBlanc is that there is really no support group for Tourette’s. He’s not even sure if anyone else in South Portland has the condition. According to Superintendent Suzanne Godin, the school district does not track that information, although Theo does receive speech therapy at Brown Elementary.
According to the Centers for Disease Prevention and Control, Tourette’s, which is three times more common in boys than girls, is diagnosed in three of every 1,000 children aged 6-17 or about 148,000 children, nationally.
Since May, when he signed up for the challenge, LeBlanc has run most weekdays with other Brown and Mahoney parents. On the weekends, he and his sister, Anne Davis of Falmouth, who also is running the four-race event, run eight to 10 miles, starting from LeBlanc’s Sprague Street home and jogging to Cape Elizabeth High School and back.
“I’m doing it for a couple of reasons,” said Davis, 35, who works at Martin’s Point Healthcare. “When Justin first started talking about doing it, I said, ‘That’s crazy! You’re nuts if you’re thinking of running 50 miles in four days.’ Then, my next reaction was, ‘Well, you can’t do it alone.
“And that speaks to the whole thing,” Davis said. “This is not just one issue, or one fight that Justin can do by himself, or Teddy can do by himself. This is all of us. This is family, including my own kids. They look up to Teddy, but even so I think this helps us to have those conversations about what makes each of us different, and about acceptance.”
Justin LeBlanc says he’s thankful to have his sister along. He’s run marathons before, including two in 2005.
“As I was hitting Mile 21 of the Marine Corps Marathon I told myself, ‘Remember this pain if you ever think about doing this again.’” LeBlanc said, laughing. “I’m going to participate in all four runs in the challenge, but I’m going to try and actually run three and a half.”
“I feel really happy,” said Theo LeBlanc. “Apparently they’re raising a lot of money for Tourette’s and I’m glad my dad is helping with that. I hope they do find a cure someday.”
And then, Theo breaks into a wide grin. Maybe scientists will never find a cure for Tourette’s, but you’ll also never find the card he just made vanish once again.
“I would really like to be an ambassador for Tourette’s for the same reason I want to be a magician,” he says, “I like to be around people.”
A CLOSER LOOK
To make Dopey Challenge donation to either Justin LeBlanc or Anne Davis, as they try to raise money and awareness for the Tourette Syndrome Association, visit:
www.active.com/donate/wdw14/Run4Ted
www.active.com/donate/wdw14/wdw14adavis
You can also follow LeBlanc’s training progress via his Twitter account, @justinleblanc71, or on his blog: http://50disneymiles.blogspot.com.
Justin LeBlanc of South Portland and Anne Davis of Freeport, above, jog past Bug Light during a regular training run as they prepare to take part in The Dopey Challenge, a series of runs at Walt Disney World totaling 50 miles in four days, held to raise awareness for Tourette syndrome, a condition with which LeBlanc’s son, Theo, is afflicted.
As his cousin Owen Davis of Falmouth looks on, Theo LeBlanc of South Portland, practices a magic trick, in which he makes a card disappear. Though afflicted with Tourette syndrome, which can cause uncontrollable tics and involuntary vocalizations, LeBlanc hopes to make a career as a professional magician.
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