Princeton High School sophomore Charles Griebell on vacation in Iceland. He will act as a youth ambassador for the Tourette Association of America next week in Washington
By Philip Sean Curran, Staff Writer
Charles Griebell is a student athlete on the wrestling team at Princeton High School whose toughest battle might be the one taking place off the wrestling mat.
He lives with Tourette Syndrome, a condition that he discusses frankly during an interview ahead of an important trip that he and his mom will make. He is due to travel to Washington, D.C., next week to met with federal lawmakers as a youth ambassador participating in the Tourette Association of America’s ninth annual advocacy day.
In his time there, he will be trained how to advocate for Tourette’s and then is scheduled to meet with Sens. Bob Menendez and Cory Booker (D-NJ) and Rep. Bonnie Watson Coleman (D-12), or, if they are not available, members of their staff. Time permitting, he might meet with other lawmakers.
“It’s to increase awareness about (Tourette’s)” and “encouraging advocacy for kids with it, especially,” Charles said. “I want to tell them that Tourette’s is a thing that people have overlooked and it can cause kids to have a hard time in school.”
Diana Griebell, his mother, said her son was officially diagnosed last year.
“His whole life, we’ve always known there were things like ADHD and anxiety …, but that’s really late to find out,” she said, seated next to her son. “And I just wasn’t aware he had Tourette’s. And so I just think it’s important to have a lot more awareness … .”
According to the Centers for Disease Control and Prevention, one of every 360 children 6 through 17 years of age and living in the United States have been diagnosed with TS, based on parent report; this represents about 138,000 children. The CDC also reports boys are three to five times more likely to be affected.
People with Tourette Syndrome have tics, or sounds or twitches, they cannot control; Charles said he has had it, on and off, from the time he was 6 years old.
“Usually when people are early in their teens or in the middle of their teens, that’s when the tics often become the most severe,” he said.
Ms. Griebell recalled her son once had a scream tic that did not stop, except for when he slept. He stayed home from school that day, as the family sought help.
“When we called doctors, there were like six-month wait times. And I’m like, ‘I’ve got a screaming kid. What do I do? He can’t go to school.’ So we had to, like, just basically pull some strings to get somebody to see us,” she said.
Charles said he takes habit-reversal therapy, a method of restraining himself from a tic. For instance, if there is an urge to scream, the technique calls for breathing inward.
Charles, 16, was born in Chicago and moved with his family when they relocated to New Jersey. He has lived in Princeton for the past 11 years, after moving from Metuchen, in Middlesex County.
He is completing his sophomore year at the high school. To help explain himself to his teachers, Charles at the start of the school year hands them a brochure that looks like a political flier; in it are pictures of him when he was on vacation in Iceland and details about how Tourette Syndrome affects him, his strengths and challenges and other details.
Charles said he feels it important to raise awareness, so that teachers and the peers of young people dealing with Tourette’s can empathize with what’s going.
“If people know about Tourette’s pretty well,” he said, “there won’t be as many cases of bullying.”
“I would say, as a mother,” Ms. Griebell said, “I find that when you do put yourself out there, people will treat you better and understand you more than if you just acted like nothing was wrong at all.”
