A special summer camp
Posted: Wednesday, August 06, 2008 8:49 PM by Sam Singal
By Tiki Barber, NBC News correspondent
Imagine being told by your peers that you are crazy because you’ve fallen on the ground and gone into an uncontrollable epileptic seizure that you don’t remember.
Confusion, embarrassment, shame, self-consciousness, and isolation are just a few of the feelings that kids with epilepsy experience on a daily basis.
Thank goodness there are people in the world like Sandy Weinstein, and her all- volunteer staff of counselors, doctors and nurses. They know that all kids need a place where they can feel “normal”.
At Camp Great Rock, for one week each summer, children that suffer from epilepsy don’t have to feel a stigma.
As Sandy puts it: "They're the insiders. Those without epilepsy are the outsiders."
As Sandy's husband, Steve, a neurologist and chief M.D. for Camp Great Rock puts it: Kids who suffer from epilepsy are just like any other kids; the only difference is that once in a while their brains “short-circuit.”
The doctors and counselors engage the kids in frank discussions during support group time about epilepsy. There is no sugar-coating here.
And it's important to note: when you’re having a seizure, you don’t exactly “feel” it.
And for many of these kids-- it’s the first time they witness a seizure because they can't see their own.
Dr. Steve uses seizures as “teachable moments” so that the kids develop an understanding of their epilepsy.
With understanding comes an end to the confusion, and embarrassment, and shame, and self-consciousness, and most importantly, that sense of being alone.
And that’s what makes this camp different from the 25 others across the U.S. that serve kids with this condition.
Sandy keeps track of the kids who attend her camps and found that there was concrete improvement in their adaptive coping skills. What does that mean, exactly? It means that when one kid asks another why her eyes are fluttering, she says without hesitation: “…they are part of my seizures.” She has taken control of her condition. That is powerful.
There are no excuses at Camp Great Rock.
Camp Great Rock was an amazing place for me to visit, partly because I have the opportunity to tell this amazing story but also because of my personal connection with this seizure disorder. My twin brother and I suffered from febrile seizures when we were younger.
Science wasn’t as attuned to the particulars of the condition at the time, so there were a lot of perceived limitations put on my life and on my brothers.
I eventually grew out of the seizures and so did my brother.
Howeever, with the birth of my first son, I was put in the same situation that my mother was… he too suffers from febrile seizures. Seizures are generally a body’s response to some other underlying condition and as doctors have told me, are not overly dangerous when treated.
But there is one thing medicine can’t address: you never get used to seeing them.
So, when I see programs like this that truly empower kids who would otherwise be on the wrong side of advantage, I can’t help but to be moved. And I can’t help but be inspired by others’ willingness to make a difference in this world.
Sandy Weinstein does this in abundance, for not only does she run Camp Great Rock, but also Camp Connect for children with Tourettes Syndrome, New Friends Camp for children with neurofibromatosis, Camp Super Campers for children with Sickle Cell Anemia, and ASD Camp for children with Autism Spectrum Disorder.
She has great vision -- and big dreams -- for the future of her camps. A permanent site for the camps is her number one priority -- because then she’s wouldn't have to turn any of these kids down. After you meet them, you can see
why.
My hat and my heart go out to her and all of her amazing kids.
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