After years of struggling in every which way, Daymon Deramus knew he was finally moving along a brighter path when he was invited to serve as the 2021 Youth Ambassador for the Tourette Association of America (TAA), representing the State of Ohio.
“I was 12 when I was diagnosed with Tourette syndrome. It has shaken my life, but, in the end, it has continued to make me strong,” Daymon, now 13, wrote in his TAA biography. “I have moved across 3 states, dealt with the death of my mother at the age of 5, never knew my dad, lived with my grandmother for 12 years and now am adapting to living with my aunt and uncle.”
Daymon has suffered more trauma and upheaval than most young people, but tics have made life even more difficult. They began in the 3rd grade and then reappeared with a vengeance in 7th grade.
When he developed cursing tics and found himself unable to stop screaming the most socially unacceptable words, including racial slurs, Daymon struggled with friendships and academics. He moved to online schooling.
Lacking a diagnosis or professional help, his struggles continued.
“By late 2019, he had already had so much going on in life,” said Tom Zimmerman, his uncle and guardian. “He wasn’t sleeping well, he was experiencing the cursing tics non-stop and it was creating a mental health crisis.”
Daymon was taken to Akron Children’s ER in Boardman with symptoms of a panic attack. He had chest pains and was barely able to breathe. He was medically stabilized, and this hospitalization finally led to his diagnosis and referral to pediatric neurologist Dr. Stephen Steiner.
Dr. Steiner referred him to Akron Children’s Tic and Tourette Service, one of 18 programs in the country designated as a TAA “Center of Excellence.
Daymon entered the 7-week Comprehensive Behavioral Intervention for Tics (CBIT) Program at Akron Children’s around the time he was transitioning to living with his uncle Tom and aunt Alison Battaglia.
“We all learned a great deal from the program,” said Alison. “We learned about Tourette’s, about the brain. We really got immersed in the education of it.”
According to Dr. Katrina Lindsay, the director of the Tic & Tourette Service and a pediatric psychologist who has been helping Daymon manage his tics, Daymon experiences something called Coprolalia, the uncontrolled utterance of inappropriate or obscene language and swearwords.
“Although often the most widely known hallmark of Tourette syndrome, this is actually one of the rarest tics, occurring in only 10 percent of the population of children and adults,” she said. “Coprolalia is widely misunderstood and significantly understudied, which places children experiencing these tics at significant risk for bullying and social isolation. They are often portrayed negatively in the media. Coprolalia is treated similarly to other tics, in which the child becomes familiar with triggering/setting events, engages in awareness training, and identifies a competing response or less-inappropriate replacement word.”
Dr. Lindsay and Daymon prioritized his tics and delved into behavior management. As some are conquered, new ones emerge. But now he has the strategies to recognize and address them through what is called a competing response. For example, if he is beginning to say an inappropriate word, he inhales deeply and alters the first sound of the word coming out. He then exhales the second syllable. Over time, he does this softer and softer, under his breath. As the power of the word is diminished, it’s under control.
Daymon also has pronounced facial tics that exacerbate with stress and anxiety, but they can also be managed through other competing responses.
“All of these tools will be in his toolkit for life,” said Alison. “The behavioral management becomes second nature.”
Tom, a mental health therapist, was impressed by the CBIT program.
“I was struck by Dr. Lindsay’s optimism, which tempered the bad news that this was a lifelong, chronic issue that Daymon will have to deal with in one form or another,” he said. “I was skeptical because 7 weeks is not that long of a time. But his tics declined dramatically during the program, maybe by as much as 90 percent. It’s a very effective, targeted therapy.”
His family is excited for his fresh start in high school in the fall, but also for a summer that that they envision will be full of neighborhood bike rides, dinners out and other activities they have avoided for fear of a verbal tic turning heads and prompting questions.
Youth ambassador has high praise for telehealth option
Daymon was particularly excited for his first major youth ambassador role in talking to the staffs of Sens. Rob Portman and Sherrod Brown and Rep. Steve Stivers in early March.
“We asked them to continue to support telehealth that became essential during COVID-19 and to continue to support funding for organizations and programs that help patients, like CBIT, and medications and research,” Daymon said. “I have just met with Dr. Lindsay twice in person but our telehealth appointments are probably more effective because they are so convenient. You are not driving hours, and you are not stressing out that you have to be there on time.”
Daymon also shared these facts with the lawmakers:
- 1 in 100 school-age children have Tourette syndrome or a tic disorder. In Ohio, that’s 26,435 children under the age of 18.
- The majority (86 percent) of people living with Tourette syndrome have a co-occurring condition, such as ADHD, obsessive-compulsive disorder or anxiety.
Alison, Tom and Daymon also greatly appreciate the social aspect of the CBIT program, that allows children with Tourette syndrome to get to know one another, and see they are not alone. It was during a Halloween-themed drive-in movie theater night event last October that Daymon learned of the youth ambassador program.
Dr. Lindsay said she vividly remembers when Daymon approached her and Dr. Sean Tams, a pediatric psychology fellow, at the event. Daymon, wearing a beekeeper’s costume (and with Alison’s service dog as the bumblebee), told them he wanted to apply for the Youth Ambassador position.
“It brought tears to both of our eyes, just knowing what he had gone through, making an already special night even more emotional and spectacular,” she said. “From our first interaction with Daymon, I knew that we were in the presence of an amazing person. He came to us with a long story of strength and resilience, and his superpowers of intelligence, sensitivity and perception were immediately apparent. The growth that we saw in him over the past few months demonstrates how hard he was willing to work to overcome monumental tic-related challenges in order to become not just a CBIT graduate, but a leader in the field of TS and a representative of the state of Ohio.”