A few weeks ago, Senator Stephen Sweeney visited the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) to meet a few of the kids and families who benefit from the organization’s resources and tireless efforts. His visit was chronicled well by the local media, MyCentralJersey.com, with a video, photos and a story.
As those who consider NJCTS part of your family know, budget cuts have affected NJCTS funding drastically over the last four years, and threats to resources and services seemed inevitable. So when the Center got the incredible news that they would be receiving a grant in this year’s State budget, my son, Ethan (13) and I were grateful for the chance to thank Senator Sweeney and let him know how our lives have been changed forever for the better because of the support and services of NJCTS.
As any parent of a child with TS knows, an occasion on par with meeting an important government official for a press conference, replete with reporters, cameras and ink barely dry on grant funds gifted, has the potential to create a stress-storm of epic proportions.
Despite our efforts to prepare Ethan for the change in routine and create calm, he woke up ticking, anxious, unreasonable and angry. Of course, we considered cancelling, but we had committed, and Ethan very much wanted to tell his story.
At the NJCTS office, we sat around a conference table with the other kids/families who would be sharing with the Senator their stories about the ways in which NJCTS had helped them. Up until the minute Senator Sweeney walked through the door, Ethan’s vocal tics were frequent, and he persistently fake head-butted me, one of his newer tics where he thrusts his head forward as though he’s going to hit me in the face and stops short before he actually does.
And then Senator Sweeney entered the room, and his presence was calming.