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Stepping out of our comfort zone for his comfort

DiannaD and her family are all smiles as they take time out for a family portrait during the 8th annual New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie.

I will be the first to admit it, I am not an “outdoorsy” person. To add to that, my family isnt either. In this day and age, my kids are happy staying indoors playing with their iPods, laptops, videos or reading a book. Our activities usually involve baseball games, which means we sit and watch our 13-year-old play.

So when I saw the invite for the New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie, I was hesitant. But then I thought, “Why cant we step out of our comfort zone to make Jaden comfortable?”

He was diagnosed with TS at the age of 4. His tics have waxed and waned, and he never has been socially awkward — until this year. Age 9, third grade and being one of the smartest in the classroom was challenging, tough and uncomfortable when you add Tourette … and fighting to hold it in ALL day — so much so that he would complain about his muscles hurting, as if he worked out all day.

I had the conversation with him. I will never forget this day. It was a Wednesday, January 11th. He asked me, “Mom, what’s wrong with me? My friends keep asking me why I make these noises and I jerk sometimes. I can’t hold it in sometimes.”

DiannaD's son, JadenE, enjoys the rock painting activity -- one of many in which he participated! -- during the 8th annual New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie.

Up to this point, I never “labeled” Jaden, never to anyone. It was a silent disorder in my home/family. I couldnt believe that I had to give him a name for his behavior. With a knot in my throat and tears in my eyes, I told him. Super unprepared for this, I silently asked God for wisdom to use the right words.

He cried for what seemed forever. We both cried. Then he wiped his tears and said, “I want to read about this.” And that’s what he did. He grabbed the laptop and googled Tourette Syndrome. He read and read — which, by the way, is his favorite thing to do.

I then came across the NJCTS website. We found the site, and it has been a blessing since. The camp was something Jaden said he wanted to do FOR SURE!!! Every day he would ask me if I filled out the registration form and sent it in.

We are all so grateful for the opportunity of not missing out on this event. As a family, we all agreed to attend the camp and support Jaden — to share in the experience with him, show him that we understand his disorder and that he isn’t alone.

We didn’t stay at Camp Bernie. We have a recently potty-trained 3-year-old and just weren’t sure with the accomodations, etc. All in all, seeing Jaden smile and let it all hang out made it so worth it. Meeting other parents and seeing other children with TS was so nice.

There is a TS community out there. My other children enjoyed themselves also. The activities were fun for all kids of all ages. We are looking forward to the camp next year! In fact, Jaden keeps nagging me now to register for the Mendham Walk in November, “just in time for his birthday”… lol … WE WILL BE THERE!

Read more about the 8th annual New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie:

Help from mother/son combo made Camp Bernie weekend priceless

“F” is for family and fun at Camp Bernie

Happy campers share family retreat weekend experiences

Camp is a haven for those who “get it”

Past blogs about camp on TSParentsOnline

 

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