Young dancer with Tourette’s finds friendship, community, confidence through dance

Haden and Kim Blanchard at the the Tourette Gala in January 2017. Courtesy photo

Haden and Kim Blanchard at the the Tourette Gala in January 2017. Courtesy photo

If you ask 12-year old Haden Blanchard to describe himself in four words, he will say he is a “funny, kind, caring dancer,” and he will probably do it in some sort of Australian/Scottish accent. He might tell you about how he dances almost seven days a week in every style from hip hop to ballet (which is his favorite).

What he won’t mention is that he has Tourette’s syndrome — a neurological condition that causes him to move involuntarily, or “tic,” and is often combined with Attention Deficit Hyperactivity Disorder (ADHD), and/or Obsessive Compulsive Disorder (OCD) — both of which he also has.

“To actually receive the diagnosis they have to demonstrate both physical and verbal tics,” Kim Blanchard, Haden’s mother, said. “Some kids will say words or repeat things that people say — echolalia — they echo the speech of others or what they hear somewhere, like on TV.”

Blanchard is a graduate psychology student at Lamar University. She said she returned to school to fill a gap she saw in the research on Tourette’s and similar disorders.

“I could read academic articles but I kept thinking, ‘I really don’t feel like there’s enough here. I think there needs to be more information.’ They can look at characteristics of things all day long, but how much does it actually tell us? So I came back to school to work on research on kids with developmental disorders. It’s sad that a lot of people with Tourette’s have reports of a childhood spent feeling bad about the way you behave and the way you move, and how everybody perceives you.

“Their brain’s are literally not working the way that their peers’ are, and to ask them to do everything the way their peers do is like asking a child in a wheelchair to catch up with the class. That’s what I would tell people when they didn’t understand what I was asking them to accommodate for. To teachers, specifically, I would say, ‘Its like telling a child on crutches to walk faster.’ It’s not fair and it’s not something that the child necessarily can help.”

Haden and Kim are involved with Tourette Texas, a non-profit organization that advocates and spreads information about Tourette’s syndrome.

“Tourette’s is rare enough that most people know someone with Tourette’s, but most people with Tourette’s don’t know another person with Tourette’s,” she said.

Kim said the Tourette Texas events help Haden socialize with people who have similar experiences.

“It gives him a way to verbalize what he’s experiencing and that helps him work through whatever challenges he has,” she said. “He doesn’t exactly know, from a child’s perspective, if his thoughts and his actions are normal — that’s the only experience he knows.”

Haden said living with Tourette’s is all he’s known.

“It’s just something I was born with,” he said. “It can make things difficult. I don’t think I would tell new people I have Tourette’s. I’d just say, ‘My name is Haden,’ and they’d figure it out eventually.”

Haden’s condition makes it hard for him to attend regular public school. His constant energy can be a distraction and some teachers are less than accommodating.

Haden’s tics often meant he would bump into other children and he was forced to stand at the front of a line, separated from the others.

“All of the kids would look at me like, ‘Why is Haden doing that?’ I didn’t mind going to recess first, but it was kind of embarrassing,” he said.

Kim said she was terrified that Haden would look at education as something that he was just terrible at.

“I pulled him out of public school and I homeschooled him myself — I had multiple teaching certifications at that time,” she said. “My mother would work with him on the work I set up each day, and we kept him on task. When he benchmarked to get into one of the public online programs this year, they said he had one of the higher scores.

“He can do it, it’s just the setting he’s in — and if you’re willing to modify to allow him to do what he needs to do. He does his work sometimes with his leg behind his head because he’s flexible — he’s a dancer — and he needs to be able to move.”

If there is one thing Haden does well, it’s moving. He is in the company of the iRule dance studio in Beaumont, where he spends upwards of 20 hours a week practicing and taking classes.

After his Tourette’s manifested, Haden’s parents wanted a way for him to expend his extra energy in a positive way. Soccer didn’t hold his interest, so Kim decided to give dance a shot.

Haden Blanchard practices his dance move to a Bruno Mars song on April 11 at iDance Studio. Up photo by Noah Dawlearn.

Haden Blanchard practices his dance move to a Bruno Mars song on April 11 at iDance Studio. Up photo by Noah Dawlearn.

“It was the first time I had ever seen him come home and focus and work on something,” she said.

“They had to use hula-hoops, and all the girls in the class could hula-hoop and he couldn’t do it. He would practice for hours going back and forth from our shop to our house doing the hula-hoop — he could walk while he did it. He got to be one of the better hoolahoopers in the class. It was funny to see this little kindergarten kid, who got in trouble for not paying attention and never focusing, really focus on something.

“When we saw him on stage at the recital for the first time, my husband and I teared up. We said, ‘This is it. This is what he needed.’”

The dancing also came with an interesting side effect — no tics. When Haden is dancing, his physical symptoms disappear almost completely.

“I don’t have any tics, apparently,” he said. “Really, I just dance and don’t tic — and that’s kind of cool.”

Still, there are other aspects of his disease that Haden has to deal with.

“People should be aware that Tourette’s is more than just tics,”Kim said. “That’s definitely just the tip of the iceberg. They usually have behavioral symptoms, emotional types of problems, because they’re dealing with a lot during the day, just trying to control tics.

“My son’s tics are very subtle, but his ADHD and OCD are pretty tough to work with.”

Luckily, the Blanchards found more than just a dance studio in iRule — they found a safe place for Haden

“They’re amazing. They’re positive,” Kim said. “The director, CharLee Rule, treats him like her own son and watches out for him. He has been thriving since then. Nothing is ever going to be perfect, he’s still a child with a disorder, but he is probably getting the best experience that he could.

“I talk to the other parents when I go to the Tourette events, and sometimes I think it’s tough for us, but then I hear some of their stories and realize he’s probably in one of the best scenarios of the kids I know.

“Charlie has seen Haden when he’s at his low points and she still loves him and treats him well. She is always looking after his best interest, and I always know that.”

Dance is also where Haden spends time with his closest friends.

“There’s Christopher — and the teacher has twins where the girl dances and the boy doesn’t dance, but he’s my friend,” Haden said. “And there are a lot of older guys. I think I’m kind of teaching my little brother, and he has this little friend, Alex, and I’m probably their role model. But the older guys — they’re probably mine.”

Last year Haden competed in his first solo competition

“He actually won in his lyrical division, and it was one of the largest categories,” Kim said.

“He did a piece called ‘Electricity,’ from the musical ‘Billy Elliot.’ Everybody cries when he does it — it’s about a little boy loving to dance — and he was chosen out of all the children to perform that day for a scholarship. He’s one of those kids — he pulls out the surprises.”

Haden’s favorite type of dance is ballet, and he prefers to perform in groups, even though he’s comfortable solo.

“I like doing group performances because I get to dance with other kids, and if I forget something I can always look over my shoulder,” he said.

Haden is just like any other 12-year-old boy — he wants to play video games and eat popcorn at the movies, and sometimes he gets himself in trouble without the help of Tourette’s.

“We were at nationals in Florida and it was a pool accident,” Kim said. “He hit his head on the side trying to do a flip — he’s a teen boy.”

“He actually had a pretty major head injury. He avoided a concussion, but he had to have 60 stitches — it did make a huge cut all the way across his forehead. His dance teacher comes into the emergency room and she’s crying because she’s worried about him and he goes, ‘Oh, no! I’m still going to dance tomorrow!’ and he did.

“He wanted to dance and I told him, ‘Well, if you’re swollen you can’t.’ He didn’t complain once. I got him up every hour and iced his head.

“We have videos of him competing with a giant bandage around his head.”

Kim said that life isn’t perfect. Haden has times when he still struggles.

“He has times still where he may not be the kid that every kid wants to be best friends with, because of his OCD — when somebody argues with him, he doesn’t know when to let it go,” she said. “Sometimes, he is so impulsive, and because he repetitively does things it can be very annoying. Even when kids understand it can be hard, because that’s not who they want to play with. So that’s something he struggled with.

“He’s getting older. He’s at the right place. His studio advocates for him. If they see anybody not being sensitive to him, they try to include and help teach each other, and talk about including everyone so they all get the same experience.”

With a disease like Tourette’s, there are good days and bad, and months that are better than others, but with the support and encouragement of his friends and family, Haden can be his funny, kind, caring self, and focus on his taps, not his tics.

For more information about Tourette’s Syndrome visit www.tourettetexas.org or www.cdc.gov/ncbddd/tourette

Haley Bruyn

UP editor

Learn more about Lamar University at lamar.edu

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