It was eight years ago this weekend that we first met another child with Tourette Syndrome, I thought as we drove up the road again toward YMCA Camp Bernie for the New Jersey Center for Tourette Syndrome Family Retreat Weekend. It was the first time we found out we and Drew were not alone.
Tons of emotions and memories flooded through all of us as we drove up the road toward the dining hall. Knowing that once we entered we would get welcoming hugs from Kelly and Marty made coming back even sweeter. It was a place where “everyone knew your name,” even if they didn’t, and we all had one thing in common. We all are someone, or love someone, who has Tourette syndrome.
This year was no different, and as we walked in and said our hellos and got our hugs, my 14-year-old daughter Ashley was recruited to take family pictures, The rest of the family, including my 19-year-old son Drew — who has TS — headed for our cabin to unpack and see if we could start an early game of volleyball to help welcome newcomers.
After a few hours came one of our favorite times at camp — campfire. There, families get to meet and interact, and the kids get to make smores and sing campfire songs. Light sticks are passed out, and we get to watch the kids open up and make friends.
Returning families get to reconnect with old friends, and new families get to relax and find that as much as this weekend will be about having Tourette Syndrome, it will also be about fun and freedom for the kids to be who they are without being made fun of or standing out.
After campfire, we went back to our cabins and there was time to strike up a game of basketball, volleyball or tetherball — maybe even a game of ping pong above the dining hall. As I sat on a bench outside of our cabin, I enjoyed the sounds of the kids laughing and squealing, the sounds of friends being made and kids being able to just be themselves for possibly the very first time.
And then there are the mornings, and our welcoming wake-up call: “Good Morning, Good Morning, Good Morning,” bellows Kelly, louder than most people can speak with a megaphone. The returning campers are not startled, realizing what is happening, but the newcomers who have not heard what was to come are probably a bit more than startled. We treasure Kelly’s wake-up call and we talk about it often during the year and get excited about it as camp gets closer. Thanks, Kelly, for always making camp fun!!
Meals and activities give us a chance to spend time with our kids and to share with other families. It gives our kids the chance to try new things and find out that they are truly special and can do amazing things if given the chance and the freedom to do so.
Time with the Rutgers students helped us parents learn new strategies and how better to cope with some of the harder times. Laughter is heard and tears are shed all with a common purpose, to better support and help our kids and sometimes to even survive ourselves. Being a parent of a special-needs child is never easy, but sharing and learning from each other always helps, and camp really helps give us the time that we need with each other to achieve that.
The talent show is an amazing time. These beautiful kids get to show us all they can do. From things as simple as breaking rocks, to hoola hooping, to Irish dancing and playing guitar and singing, telling jokes, doing gymnastics, they shine — showing us that in spite of all that may stand in their way, each child has very special gifts that make them special and FUN!!
By the end of talent show we are exhausted but in a good way. A good night’s sleep followed by another wake-up call from Kelly brings us to Sunday and a much-needed good breakfast and COFFEE!!!!!!
Most years we stay until after lunch, but this year we were off early because of another Sunday engagement that we had. We packed up and drove off, excited about new connections made and thankful that we were once again able to help others as they, along with us, find their way on this journey to help our kids have as normal, fun, fulfilling and successful life as possible.
Read more about the 8th annual New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie: