New Haven Register (Sunday) (New Haven, CT)
Milford teen selected for Tourette Association of America program
MILFORD — Kai-Rain Paolucci has been living with Tourette syndrome for a decade, and now he hopes to bring awareness to this nervous system disorder which causes repetitive movements or unwanted sounds.
Paolucci, now 17, has been named an ambassador with the Tourette Association of America’s Youth Ambassador Program, and his goal is to foster acceptance as well as destigmatize the disorder and “make this world a much safer and enjoyable place for people with Tourette syndrome and tic disorders.
“Having a platform after such a long and strenuous period of not being able to speak up and having that societal suppression, it has shown me that it’s OK to be Tourettic and it’s more than OK to be someone with Tourette syndrome and tics,” he said.
“My message to anybody is don’t feel obligated to hide that aspect of your identity,” Paolucci added, “but see Tourette syndrome as not inherently bad and see it as something that does make you unique. But also know that there are people who stand alongside you.”
At 7 years old, Paolucci said he started experiencing involuntary tics, which left him confused and nervous about the cause.
“I experienced that for six years until the Tourette had progressed enough to be noticeable to a neurologist who finally gave me a diagnosis of Tourette syndrome,” he said.
At the time, Paolucci said he did not know what it was, and the people around him didn’t understand what it was either.
“A few months later, I started to experience vocal tics, respiratory tics, and that’s when I started to know more about it and grow more aligned with my tics were. From where did they derive and what anxieties might I have about Tourette syndrome, as well as how I am going to be treated and learning more about communities as well,” he said.
Paolucci started freshman year in a school in upstate Connecticut. Paolucci’s tics weren’t as noticeable as when he left, which wasn’t on good terms with the school.
“It wasn’t so much the students who were bullying me or treating me poorly but rather the administration and a couple of the teachers who seemed tired of me and tired of my tics,” Paolucci said. “The administration seemed tired of my tics and seemed like they didn’t feel like supporting me anymore, with the same amount of enthusiasm as they did several months prior.”
When Paolucci started experiencing coprolalia, the involuntary and repetitive use of obscene language, he said the school would isolate him for several minutes or hours at a time.
“They said if I couldn't suppress my tics enough, I would have to go home for the day,” he said. “There were times I was so scared I wasn’t going to be able to go back to class or that I wasn’t able to peruse my normal day at the school.”
“I spiraled into a pit of hopelessness until the school eventually told me I had to leave because my Tourette was too much for them,” Paolucci added. “It was pretty tragic and detrimental to my self-esteem and my self-perception. I deemed myself like they did, a liability and someone that needs to be isolated from society, peers and family. It was extremely stressful to regain that confidence and even enhance what I didn’t have.”
Now attending Hope Academy, Paolucci said the school has continued to be supportive.
“During my orientation, we disclosed that I had coprolalia and a little bit of copropraxia, making profane gestures sometimes, and they told me they would support me through that,” Paolucci said. “They did help me regain that confidence and further amplify it as well as other people around me learning about Tourette syndrome and how to support me through it.”
Through the prejudices and the victimization Paolucci experienced, he realized many people go through the same experience, which is why he decided to apply to become an ambassador in the Tourette Association of America Youth Ambassador Program to advocate for people with Tourette syndrome.
“I didn’t know I had a knack for public speaking, and in 2019, I had created a presentation for gender and sexuality alliance for my former high school, and I had presented to roughly 30 people in a conference room,” he said. “I realized that I did have a knack for public speaking, which is a lot of what ambassadors do. A lot of public speaking in school and probably in more formal settings as well.”
As an ambassador, Paolucci has been selected to participate in the Association’s ambassador training and National Advocacy Day on Capitol Hill from Feb. 28 through March 2.
The chosen ambassadors will share personal stories with representatives in D.C. and return to their hometowns to raise funds and advocate for public policies and services that promote a positive school, work and social environments for individuals affected by the disorder.
Paolucci said he created business cards when he was 14 and received many public inquiries of people either wondering about the disorder or its impact on his life.
Anthony Paolucci, Kai-Rain’s father, said Paolucci has spent time over the years educating people about Tourette, so he sees him having great success as an ambassador.