For nearly a decade, children and families affected by Tourette Syndrome and its associated disorders have converged upon YMCA Camp Bernie in beautiful Hunterdon County each June for a few days of fun, learning and the realization they are not alone – that help not only is out there, but is readily and plentifully available.
This year’s Family Retreat Weekend on June 7-9 was the best yet put on by the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) – thanks to a generous grant from the Brad Cohen Tourette Foundation; sponsors such as the HAPI Foundation, ShopRite, Wegmans and Costco; many hard-working volunteers; and the scores of children and families who traveled as many as 150 miles to be a part of the “best weekend of the year.”
Each attending family had a different motivation behind attending, but there was a general theme that emerged – especially from the numerous first-time families: “We are not alone, and we are so glad that there are professionals and other families out there just like us who can help us.”
“This was our first weekend, and it was invaluable,” said Megan Devero, who attended camp with her daughter. “It was helpful for my daughter to meet and spend time with other kids experiencing the same issues that she has so she realizes she is not alone in this. She could have fun, relax and be herself.”
Devero’s daughter thoroughly enjoyed hearing a panel of young adults discuss their experiences with Tourette Syndrome and how others can adjust to life with the neurological disorder with ease and even joy. Devero, meanwhile, benefitted from the “Family Dynamics” seminar for parents, presented by Drs. Gayle Forman and Lisa Cox.
Numerous other families – first-timers and long-timers alike – had similar reactions to Devero. For the Wilcockson family, which this year attended the Family Retreat Weekend for the seventh time, camp was further affirmation of how important community is when it comes to special needs children.
“It is always a wonderful experience,” Audrey Wilcockson said. “The kids get to meet others with Tourette and enjoy the camping experience, while the parents can network and learn from the meetings provided for them. That’s why we keep coming back. I would encourage anyone who has not yet had this unique experience to give it a try.”
One of the premier aspects about the Family Retreat Weekend is the opportunity for a parent to see their child make friends, develop or enhance social skills, and have fun. Many children with Tourette don’t have a chance to receive such opportunities, especially during the school year.
“We met so many nice families. We felt comfortable and like we didn’t have to apologize or feel embarrassed about our son’s behaviors,” said Chris-Jan Hance-Varalli, whose family attended the Family Retreat Weekend for the first time. “There were so many fun activities, and the kids loved it. Our 10-year-old struggles with social skills, and he jumped right in with the other kids.”
Some families related their hesitance in coming to camp, citing reasons such as being unsure how their kids would react. By the end of camp, nearly every family intimated how much the experience meant to them – including the Phillips family, which attended camp for the first time.
“It was an amazing experience for us,” Wayne Phillips said. “Our son really enjoyed himself and loved the fact that there are other children that are just like him.”
June 6-8, 2014, will mark the 10th anniversary of the Family Retreat Weekend, and it once again is scheduled to take place at YMCA Camp Bernie. For more information about the Family Retreat Weekend, please call NJCTS at 908-575-7350 or visit www.njcts.org.