Life-Changing Therapy Helps “Tic Tastic” Boy Manage His Tourette Syndrome

Sep 18, 2018 11:45 AM

Author: Pamela Manson


Therapist and boy with Tourette Syndrome
Heidi Woolley, director of OTRT’s Life Skills Clinic, monitors Micah’s progress.

There was a time when the involuntary tics of Tourette Syndrome seemed to control 10-year-old Micah’s body.

Now the boy manages them, thanks to the help he received at the University of Utah’s Occupational and Recreational Therapies Life Skills Clinic. Just months after the boy began treatment in April in the clinic’s Comprehensive Behavioral Intervention for Tics and Life Function program, most of the more than 18 tics are gone.

“We just feel very grateful to have found this clinic,” Micah’s mother, Carrie, said. “It has been a life-changer.”

Occupational therapists Heidi A. Woolley, OTD, OTR/L, director of the Life Skills Clinic, and Sarah Gray, an occupational therapist, teach participants in the CBIT non-medication treatment program to make an opposing movement when they feel the urge to tic, such as tensing the neck for a head shaking tic. The “competing response,” which makes the tic more difficult to do, can reduce the severity of a tic or even eliminate it.

The Life Skills Clinic recently moved into a bigger space with new equipment, including a sensory room, and expanded the CBIT program in collaboration with the Tourette Association of America. In addition to CBIT, the clinic has programs for children with autism and people who have suffered strokes, among others.

The U. College of Health is holding a grand opening for the clinic from 10:30 a.m. to 1 p.m. Sept. 22 at the new site, 417 Wakara Way, in Salt Lake City. A ribbon-cutting will take place at 11 a.m., followed by tours of the clinic. A petting zoo, games, face paintings and fare from a variety of food trucks also will be part of the celebration.

Tourette Syndrome is a neurodevelopmental disorder that becomes evident in early childhood or adolescence and is characterized by motor and vocal tics, according to the Tourette Association of America. The association says an estimated 1 out of every 160 children in the United States between the ages of 5 to 17 has the disorder.

Micah’s symptoms included deep blinks, winks, shoulder shrugs, neck juts, pursed lips, grimaces, twitches, elbow nudges and vocal squeaks. He does not have coprolalia, the involuntary outburst of obscene words or inappropriate remarks, which affects only a minority of people with Tourette.

In CBIT training, the client is first taught to become more aware of when the urge to tic is starting. The next step is to come up with the competing response that is the opposite of the tic.

The third major component in reducing tics is to employ stress-reducing strategies and adopt life balance techniques.

The competing response is based on where on the starts, according to Woolley, who is clinic director and an assistant professor at the College of Health.

“We have to find the first muscle that is ticcing and then we stop it right at that first movement,” Woolley said, adding that Micah is the master of coming up with a competing response that works.

For example, when Micah feels as if he’s about to scowl and lift an eyebrow, he purses his lips and brings his eyebrows together.

Not only does Micah help create his responses, he names them – one is called Voldemort, after a character in the Harry Potter novels -- so he can remember which one to use for which tic. When his parents see their son experience a tic, they use the code words to quickly remind him how to react.

Micah, a straight-A fifth-grader who is in a gifted program at school, was diagnosed with Tourette Syndrome last year. By then, the boy was blinking so hard and deep that reading was painful and his parents began researching how to help him.

Eventually, they heard about the Life Skills Center and Micah began the CBIT therapy in April.

“Finding resources for your child with Tourette’s Syndrome is like the equivalent of being in the desert and looking for water,” Carrie said. “Then we came in and it was like finding the waterfall in the desert.”

Dad Seth said the changes in his son, who also has attention deficit hyperactivity disorder, have been remarkable.

“To be only 10 and be able to do that, I’m really impressed,” Seth said.

Micah also shines at self-advocacy, which is one of his goals in the CBIT program. When asked by Woolley what he would say if someone at school called attention to his tics or told him to stop, he replied, “I can’t control it.”

And what should his classmates do? “Ignore it,” Micah said.

In the fourth grade, Micah gave a “Tic Tastic” talk to his class about Tourette Syndrome, complete with a PowerPoint presentation. He also led his classmates in an exercise to give them an idea of what the disorder feels like.

“You have to write the Pledge of Allegiance but every time I clap, they have to blink hard and shrug their shoulders,” Micah told his classmates.

Adding to the difficulty, the students had to cross out every third word in the pledge.

“You had Tourette’s for like 90 seconds,” Micah told the class – and emphasized that he has known his whole life what it’s like to have the disorder. He plans to give the same presentation to his fifth-grade class soon.

The CBIT program also was a life-changer for Taryn Davis. She was diagnosed with Tourette Syndrome when she was 14 and tried different therapies and medications for years but nothing stopped her tics.

“I was very discouraged not having control over what my body was doing,” Davis said.

Then she came to the clinic a few years ago and now at age 24, she has found a way to control her tics.

“It was the biggest blessing,” Davis said. “It’s amazing how it works.”

Other programs at the clinic offer help for children with autism and their families, including drama therapy to improve the social skills of preschool kids; preparation for youths transitioning to adulthood; and occupational therapy for 5- to 12-year-olds who have trouble getting through dental visits. In addition, couples coping with stroke can get help improving their quality of life.

The clinic provides interdisciplinary training to doctoral students in occupational therapy, speech language pathology and education psychology and gathers data from the programs for research projects.

For more information about the programs, call the clinic at 801-585-6837.

 

 

 

 

 

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