Tourette Camp – A Unique Ten Year Experience

Written By: Bennett Lavenstein

There are camps and there are camps, camps for kids, camps for adults, camps for special sports, camps for special interests, camps that parents may send their children to for a respite both ways. And then there are the camps devoted to special needs ,special disorders that hopefully provide a special therapeutic outcome. Such is the case with Camp for Tourette children and young adolescents. This then is the ten year retrospective look at the experiences , the lives and events, many humorous and touching that have been embraced collectively by 500 individuals with either Tourette syndrome or Asperger’ s syndrome that would spend a week together in an environment devoid of the restrictions of the other 51 weeks of the year. And this is the story of one of the few camps in the United States devoted to this cause and founded by professionals at Children’s National Medical Center in Washington DC. They came with their parents, they came with their sleeping bags, their sports gear and of course their I Pads, cell phones and video games. The rules were to please leave the high tech electronic devices at home, so easily forgotten. They came with their pills, their medications for tics, for behavior: the clonidine, the guanfacine, the ariprazole, the sertraline, the methyphenidate, the atomixitine , and variations thereof, to name generically a few, plus the vitamins, the allergy drugs, the lotions, the potions and the schedules for the administration of everyone of these. First days of camp were always associated with anxiety, anxiety by the children, by the parents who left them off for seven days of sleeping away and of course the staff. The returning campers came for another season, known for their unique and sometimes difficult to control behaviors and hopefully a year or two or three older with a diminishing level of troublesome habits. They came looking for a good time, free of stress, hoping to socialize with their like kind and ultimately making lifetime friendships without the stigmata of their disorder. And they came to play sports, to swim, to use the zip line, to fish, bask in the glow of the campfires and to have stories to tell over the next 12 months. And all of the above in fact exactly happened. The youngest was AH, nothing appealed to him, not one sport, not one craft, not one team activity, not one adventuresome event. OCD consumed him and when asked what he enjoyed most, his retort was “ cloud watching”, an activity we had never thought to put on the list of available activities. There was ST, a handsome teenager plagued with the ravages of almost uncontrollable tics, an aspirant to play nationally ranked tennis who could not tolerate any medicicne his physicians had presecribed so he abandoned them all and played magnificent tennis with no intrusive tics when engaged in a match, ultimately a New York state champion. There was BB, the young man with attention deficit disorder, Tourette and Asperger’s syndrome who in the dead of night, promptly at the stroke twelve, pulled the fire alarm in his dorm and the three volunteer fire departments from neighboring towns came onto the lawn much to the delight of all the campers, of course there was no event. But they had quite the story to tell. And there was the odor of a fuel tank on the campus that annoyed two campers, so they too decided to activate the alarm system, on another occasion,only to bring the HAZMAT crew, the fire department and the OSHA team onto the campus one moon filled glorious night. No controlling impulsive behavior. But there were the meals in the mess hall, where the decibels reached over 80 and finally the rest periods where all could take a break. The staff was well prepared for all contingencies, with mature, capable college, graduate and post graduate students acting as counselors. And of course the resident PhD psychologist , and social worker, the camp director, to attend the emotional crises and the camp doctor to attend to the minor aches and sprains, stomach cramps, lacerations, insect bites and the occasional broken finger. So what is the outcome of ten years of camping for these individuals, some for a season some for more than one. Of course they came with one thing in common, a disorder described by the famous French neurologist Gilles de la Tourette. Some with a disorder only recently recognized, Asperger’s with the convoluted stilted and frequent OCD symptoms impacting upon socialization. But they all thrived in the camp environment, the activities being the common denominator that levels the playing field and not their symptoms which fade into the background. And the parents, forever thankful that their young entrusted to the staff, have had a personally enriching and healthy week. And importantly, the improved resilience of the campers after their one week experience, frequently their less dependence on medication and their friendships made amongst all that attend. So for the campers from throughout the East coast and from New York who attended and the staff another successful summer , the tenth anniversary to be exact. And what about the staff , well some seek the refuge of the North Fork annually at the end of the summer for their own respite, before plunging back into the foray of delivering medical care after Labor Day. See you next year at camp , don’t forget to leave your electronic devices at home. Bennett Lavenstein, MD Summer 2014 East Hampton, NY