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Retreat weekend changed the way this family viewed life with TS

The New Jersey Center for Tourette Syndrome’s annual family retreat weekend will take place June 8-10, 2012, at YMCA Camp Bernie in Hunterdon County. Here is a personal testimony from TracyL and her family. For more information or to sign up for this year’s camp, please visit the Family Retreat Weekend page or the Family Retreat Weekend story on NJCTS’ website.

Prior to going to Camp Bernie for the first time last year, we didn’t know any other kids with TS, and had never met any parents who had this in common with us.  Our son, who is 11 now, has moderately severe motor tics with a Tourette-like OCD and tics of the mind that have been painfully disruptive since he was barely a toddler.

Not long after arriving at Camp Bernie, the kids were whisked away to create tie-dye T-shirts and enjoy a “hands-on” critters class, while my husband and I went to a parents share session — which we had no idea would change the script for our family for good.

Walking into a small, rustic room in the back of a YMCA cafeteria hall, my husband and I were complaining to each other about having to bunk with people we didn’t know and how we had to expect no sleep for the night.  To the contrary, we had our best night’s sleep in a VERY long time that night at Camp Bernie.

In that small, rustic room, we sat and talked with parents years ahead of us in doctors visits, therapies and medications. We heard therapists share the latest resources available to us, and they listened to worries we had that we never shared with anyone before.

After all, how could someone who hadn’t raised or treated a child with TS understand what we were seeing and feeling on a daily basis?  And for the first time, we were surrounded by ONLY those people in the room!   

Our kids rode horses, the zip line and canoed on the pond. In general, they had 24 hours free of self-consciousness and worry. And my husband and I got MUCH more.  We took home a few invaluable insights that were critical to our daily coping and very individual to our place in this journey.

I’m sure these “takeaways” were different for everyone that weekend.  Most importantly, we walked into Camp Bernie alone, struggling mostly in silence with a disorder that is incredibly complex and challenging. And we left camp on Sunday as part of a family — the NJCTS family, the parents, educators, therapists — all who know and care for one another, and a year later, they continue to reach out with support and understanding.

Camp Bernie is on our calendar now permanently, for as long as it exists — and in the event that it doesn’t one day, everyone is invited to our house, as humble as it is.   Because it’s family that matters — and ours thankfully includes NJCTS.

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  1. Here is another quote from mom Melissa Kuperman about the family retreat weekend that didn’t make it into the NJCTS story:

    “It’s so much fun! We always try to get up to camp early enough to enjoy the campfire. The climbing wall and archery are two of my children’s favorite activities. There are crafts, sports, swimming, boating, and plenty of time to hang around with old buddies and make some new friends, too! We can’t wait for this year!!!”

  2. As a TS parent veteran (with a senior in high school and a sophomore in college), as well as a Camp Bernie veteran, I can say that TracyL gets it exactly right. As I’ve been quoted before, the Camp Bernie weekend is, quite simply, the best weekend of the year – for the whole family.

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