By MEGAN ZARODA
PORT MURRAY | For Dean Roncati and 100 other children with Tourette’s syndrome, this weekend wasn’t just about fun.
It had a real purpose.
“I come to help people know that Tourette’s is a big thing,” said the 12-year-old from Haworth, N.J.
Roncati and the youngsters spent the weekend at YMCA Camp Bernie enjoying fishing, horseback riding and even sharing “tic stories.”
This is the second year the Tourette Syndrome Association of New Jersey hosted a weekend at Camp Bernie for families with Tourette’s children. Seventy families attended this weekend, nearly double last year’s number. Over half are returning families, according to Faith Rice, executive director of the Somerville-based nonprofit.
Rice said about 26,000 children in New Jersey have Tourette’s syndrome, an inherited neurological disorder that is characterized by involuntary and uncontrollable vocal sounds or movements called tics. A multi-faceted syndrome, it can be accompanied, and even overshadowed by problems caused by attention deficit disorder or obsessive, compulsive disorder.
For several of the parents, the weekend at Camp Bernie is about camaraderie and the ‘I-get-it’ moment when they realize their child is not alone.
“It’s the only place I’ve ever been where I could connect with another family that understood,” said Sharon Ritz, a returning camper from Cherry Hill. Ritz has twin 13-year-old boys, Adam and Joshua, who have Tourette Syndrome.
“It’s freeing,” said Alicia Brzycki, of Lawrenceville, also a returning camper. “Each time I come, I can go back into the world accepting (Tourette’s).”
She said she often “sucks in her breath, humiliated” when her 9-year-old son Ryan’s tics go “ballistic.” When Ryan had an episode outside the camp, she said another mother just smiled and put her at ease.
“She got it,” Brzycki said.
Conrad Roncati, Dean’s father, said the post-experience is more important than the weekend camp. He said when the children see others like them, they don’t feel so alone.
“This is a revelation,” he said. “It’s not a video, not a book.”
The association also offers a practicum for graduate students at Rutgers’ School of Applied and Professional Psychology. Students lead break-out counseling sessions with the Tourette’s syndrome children, parents and siblings to give them their own space to share experiences, challenges and successes.
Kara Biondo, 10, led the children’s session. “It was the first opportunity for them to meet kids who had Tourette’s, to talk about what it’s like, sharing each others’ tics — do they hold them in or let them out,” she said.
“These kids are not used to being in a room where others understand,” said Shawn Ewbank, 10. “The installation of hope, it’s really valuable.”