6 MONTEREY COUNTY WEEKLY MARCH 14-20, 2024 www.montereycountyweekly.com 831 Phoenix Gonzalez was diagnosed with Tourette syndrome when he was 6, causing him to have uncontrollable movements that subjected him to the cruelty of his classmates. His mother Gail Gonzalez says they decided to keep quiet about it for a while, not telling family members of the diagnosis. But as the bullying worsened, they knew something had to change. Gonzalez says they reached out to groups that raise awareness of Tourette syndrome, and heard one constant message. “Everyone said the same thing: You have to speak about it,” she says. “If you educate them, the bullying will lessen.” At the height of the bullying in third grade, Phoenix and his mother put that advice into action. They organized a presentation on Tourette syndrome in front of his class, telling the young students that Phoenix’s movements were involuntary, and it was just something he was born with. “It was a complete 180,” she says, adding that Phoenix came home beaming that day, telling his mother that “everybody at school likes me now.” “When kids don’t know what’s going on, they might tease or bully. But when they knew it was involuntary, something he was born with, then they were all completely understanding,” she says. “Since then, Phoenix and I both realized: knowledge is power.” Phoenix, now 12 and a seventh-grader at Seaside Middle School, has grown into an advocate for people with Tourette syndrome, and is now taking his message to Washington, D.C. The Seaside pre-teen is one of 64 youth from across the country to be chosen as a Youth Ambassador for the Tourette Association of America. Phoenix, the youngest of this year’s group, headed to Capitol Hill on March 6, where he spoke with legislators to advocate for public polices for people with Tourette syndrome and tic disorders. “Right now, barely anybody knows about Tourette’s, if they know it at all,” he says. “There’s no proper education about it. There’s so much bullying going on. I used to be in one of those situations. None of the other kids knew what Tourette’s was. They thought I was weird, making random movements for nothing.” An estimated 1 in 50 school-aged children in the United States has Tourette syndrome or a persistent tic disorder, which causes them to make sudden uncontrollable movements and sounds called tics, according to the Tourette Association of America. Due to the complexities of the disorder, 50 percent of individuals affected are undiagnosed. The Youth Ambassador Program launched in 2002, and has consisted of over 500 teens who have completed more than 1,000 activities that are estimated to have reached more than 5.5 million people, according to the Tourette Association of America. Since that third-grade presentation, Phoenix has shared his story to help raise awareness, including a segment on NBC Nightly News in 2022. “It’s been a tough road, but he’s come a long way,” his mother adds. “He’s super strong. He’s learned to self-advocate and speak up for himself.” Gonzalez says there are many misconceptions about Tourette syndrome among the general public. While movies and television shows may exclusively portray those with Tourette’s as consistently shouting vulgar language, such a condition of the syndrome, called coprolalia, is extremely rare, Gonzalez says, affecting only about 1 in 10 people with Tourette’s. Tics may also not be visible. Phoenix, for example, had trouble focusing in class because he was mentally counting the number of words spoken by his teachers, Gonzalez says. But as he grows older, Phoenix says the tics appear to be calming down. “Over the past year, I’ve figured out that my tics have slowly started to slow down,” he says. “A few years ago, I used to have them multiple times every couple of minutes. Nowadays, I’m starting to get more used to them. I’m getting them a few times a day now.” Tic Talk Seaside pre-teen heads to Capitol Hill to advocate for those with Tourette syndrome. By Erik Chalhoub Phoenix Gonzalez of Seaside hopes his story helps others with his condition. “I want them to know that there are millions of other kids that have Tourette syndrome, and they’re not the only ones,” he says. “Right now, barely anybody knows about Tourette’s.” TALES FROM THE AREA CODE DANIEL DREIFUSS
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