Eighth annual event put on by the New Jersey Center for Tourette Syndrome
attracted nearly 200 families, including first-timers and longtime veterans
LEBANON TOWNSHIP – The Kowalski family has been very active in the New Jersey Tourette Syndrome community for more than five years now – since their daughters, Tess, 12, and Paige, 9, first were diagnosed with the misunderstood, misdiagnosed neurological disorder. Part of their busy agenda has been to annually attend the annual New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Family Retreat Weekend at YMCA Camp Bernie.
The girls wouldn’t miss it for anything, and they were all over the grounds of the Hunterdon County camp during the June 8-10 weekend. Their mother, Leslie, couldn’t help but smile when she reminisced about how much the weekend has meant to her family over the years.
The activities are fun and engage everyone in entertaining ways, but it is the camaraderie and chance to learn from experts and other families alike that draws the Kowalskis back every year.“I love Camp Bernie for all of us because I see my kids challenging themselves to do things they haven’t done before,” said Leslie Kowalski, of Plainsboro, who along with her husband Tim has been bringing the girls to the camp since they were 6 and 3, respectively. “The first time they ever climbed a rock wall was here. The first time they went on the giant rope swing was here.”
“We just love being around everyone. We call them our TS tribe,” Leslie Kowalski said. “We have a lot of fun together as a family. We’ve progressed from all four of us being together all the time to the kids running off with the kids they knew from the year before. They have these connections with kids they might only see once a year. It’s a safe place where there’s a lot of freedom and a lot of closeness. We wouldn’t miss it.”
Tess, who gave a TS talk during the weekend as part of her involvement with the NJCTS Peer Youth Advocate Program, says she loves the retreat weekend because “it’s a great experience for me to make new friends who have TS and understand what I have.” Added her sister, Paige, who loves to hit up the camp’s archery range: “It’s a different experience here every time.”
Scores of other families who attended echo the Kowalskis’ sentiments. Here is a sampling of what some had to say as they roamed the grounds of Camp Bernie:
Barbara Lutsky, of Manalapan – whose daughter Dana loved her time at the archery range – said, “It’s a place to be with others to learn more about Tourette, to spend time with other families and have new experiences.”
Jennifer Mazzola, who brought her family from Emerson to the retreat weekend for the second time, said: “I enjoy coming here because my son gets to be around other kids he can feel comfortable with. I don’t have to explain to the other parents what’s wrong with my son. He can just be who he is.”
Jaden Echevarria is just 9 but has the poise and intelligence of someone three to four times his age. He loves these retreats because “I can just be around people who have Tourette, just like me. There are a lot of fun activities, and my favorite one of all is the big swing. It was so much fun.” Jaden’s mother, Dianna Perez, found out that he had TS when he was 3, but it wasn’t until this year that the tics and other symptoms started to manifest. She needed help, and she found NJCTS – and information about the family retreat weekend – through its website, www.njcts.org.
“I thought it would be a great experience for him and our family to be with children who have the same symptoms,” said Perez, of Landisville. “He can feel normal here and be OK. It’s been a great time, and we are enjoying ourselves. It helps us (as a family) do something with him that he knows we care and are aware. He doesn’t have to feel like he’s going through this disorder alone. He understands that we’re going to do anything we can to help him get through this.”
For more testimonials about the family retreat weekend at Camp Bernie, please visit NJCTS’ TSParentsOnline blog at https://njcts.org/tsparents. For more information about the weekend or any of NJCTS’ programs and services, please visit our website or call 908-575-7350.
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New Jersey Center for Tourette Syndrome and Associated Disorders, Inc.
Collaborative partnerships for the Tourette Syndrome community.