EDITOR’S NOTE: This blog is about camps for Tourette Syndrome children. For anyone living in the New Jersey/New York Metro area, Camp Carton is taking place July 14 to 20 in Rhinebeck, N.Y., for kids with TS ages 10 to 12. Also, the NJ Center for Tourette Syndrome annually hosts its Family Retreat Weekend in June at YMCA Camp Bernie in Hunterdon County, N.J. Registration for this year is closed now, however.
I recently attended the National TSA Conference held in DC. It was nice to see old faces and meet new ones. The new Executive Director, Annetta Hewko, has some great ideas, new insight, and is excited to be a part of the TSA. During the conference I spent one of the days attending the “Newly Diagnosed Seminar” that typically occurs the day before the main event. I am always interested in hearing about anything new, and what parents of newly diagnosed children are being told. One mother raised her hand and asked a question that went something like this …
We haven’t really talked much to our daughter about her having Tourette Syndrome. I’m not sure how much to tell her, or focus on the Tourette’s. I am not sure if we should have her around other children with Tourette…would you recommend sending her to a Tourette camp? He said no…he would rather see our kids at regular camps instead…
My heart hit the floor…right outside the door of the conference room sat about 30 teenagers with TS that had just spent the last few days together with the TSA’s Youth Ambassador Program…we could hear them laughing, talking, and giggling. They were happy and having fun. The last few days empowered them to embrace their disorder, be comfortable in their own bodies, and advocate for themselves. I know this first hand because my son has been a Youth Ambassador for the past 7 years. The speaker from the seminar and I had a quick chat after the talk and he apologized.
To me her question seemed more about being comfortable and accepting the diagnosis. Should they be embarrassed by it? What do we tell people we know when so much of this disorder is misunderstood? Do you tell family and friends about it? Should we embrace it or hide it? Will my child get worse if I subject her to other people with TS?
Our adults with TS explain to me that sometimes they’ll mimic other tics for a bit…but that they go away. They also describe that tics are always changing anyway. The kids explain to me that being with others who have TS makes them more comfortable in their own bodies…some for the very first time. Some tic more when they are stressed…they may also tic more because they are excited, comfortable, and happy.
Honestly…Tourette camp is not about Tourette. It’s about challenging everyone in a safe environment, becoming independent, working through their anxieties, learning new things, making new friends, and most of all having fun! What I see are kids that are happy and having a great time.
What a Tourette camp provides is a camping experience with the support and understanding of the complexities of the disorder. It provides the kind of support that many of these children need…whether it is about their tics, OCD, ADD, anxiety, or social skill difficulties. While a regular camp may struggle to understand them…we get them. The most crippling problem for many children can be social isolation.
These children make friends, show off their strengths and talents, step out of their comfort zone, and become more confident. Many children return looking forward to the one week all year that they are totally understood. The children who come to camp that are more comfortable and confident will help those around them.
One of volunteers from last summer, Nora Miller, is a 4th grade teacher. I recently had a conversation with her about this and she sent me her story to pass on:
My name is Nora Miller, I’m a 4th grade teacher and love it. I also live with Tourette syndrome. My whole life has been a roller coaster of sorts…ups and downs, no real direction along with lots of anger. I realized this past summer after attending Camp Twitch and Shout just how much I had been suppressing my tics. I had only ticced in front of my family, and even then would find myself suppressing it. My family members were the main ones to experience the fall-out of my anger from the suppression. Wow, am I lucky to have them in my life!
When I saw a chance to volunteer at camp and be with others who have the same condition as myself, I was both excited and nervous. You see I’ve only been to a TS camp once as a camper when I was in 6th grade. Everything then was so new to me. I wasn’t completely myself and didn’t give in to the full experience that I could have had. At that time, I went to a school with teachers and students who didn’t understand why I would do the things I did. It was’t their fault, I was partly to blame because I was so scared to explain it. Therefore my fear led me to start suppressing my tics.
I didn’t realize it at the time, but by doing that I was releasing anger in its place. Forgive my rambling…it will all make sense soon. So attending camp last summer was a new experience for a 34-year-old who never really felt like herself. I’ve always accepted that I have TS, ad I have no clue what it would be like to live without it. But, I do know that I wasn’t being my true self either.
When I got to camp I was apprehensive and shy, which really took me back to my 6th grade self. I was nervous that I might pick up a tic and not be able to get rid of it. When I was younger I used to grind my shoulder blades together so badly that I had bruises up and down my back. My fear wanted to take over…but then I met the kids I was going to work with and everything went away. As I started to adjust, I slowly realized how much I was missing by not allowing myself to tic in front of others. This sense of acceptance swept over me and I was finally letting go. The more I ticced…the less angry I was, and the more fun I had. I can honestly say I haven’t had that much fun in a long time. My campers inspired me to be myself. I don’t know if they’ll ever truly know how much that means to me. I think in life we worry what others think so badly that we hinder ourselves from enjoying what life has to offer. I was lucky enough to spend a week with people who understood me and who I felt knew me…even though we just met.
I understand that some worry about the aspect of picking up others tics – and believe me I did too. What I can offer you is that anything is possible in life. But what is not always possible is the opportunity to surround yourself with so many of the same individuals who can provide you with the most amazing support system you could ever imagine. Family is key to me, and now I’m so proud and happy to know that I have another family that understands me just as well. Please consider this once in a lifetime opportunity for your loved ones with TS!
Nora Miller, Camp Twitch and Shout Volunteer