Powerful ELI Talk by Pamela Schuller, NFTY-GER Regional Director of Youth Engagement and Inclusion Specialist for URJ Youth Programs
When my son, Ben, was a kid, a few times a year, he would get these funny twitches. It was kind of cute, actually. Like a bunny, twitching its nose. Sometimes it would be accompanied by some throat-clearing. Or even some eye-blinking. And it was always accompanied by cold symptoms. The pediatrician would prescribe a 10-day course of antibiotics, which would clear up both whatever infection he had as well as these weird movements.
Over time, however, it would happen more frequently. Instead of just one or two times a year, it was more like half a dozen. And instead of some cute rabbit-like movements, Ben’s head would snap to the side. Or his jaw would jut out repeatedly.
In the early spring of 2014, Ben started ticcing and just couldn’t stop. No longer restricted to his head, Ben experienced “trunchal” tics, tics that had moved right on down the trunk of his body. His legs would suddenly kick away from him. His arm might thrust away from his body. His back would hyperextend backwards. And he made noises. Lots of them.
Which led us to a formal diagnosis in November of 2014: Tourette’s Syndrome.
Tourette’s Syndrome is a neurological disorder where a person makes involuntary movements and sounds such as repetitive eye-blinking and grunting. Symptoms tend to appear in childhood or in early adolescence; the most severe form affects more than 200,000 people while one in 100 have a milder form of the disorder.
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This post originally appeared at Kveller.com