First statewide event will take place April 29 with the Somerset Patriots at TD Bank Ballpark
Tracy Lederman has seen just about everything that can happen as the mother of an 11-year-old son with Tourette Syndrome – a misunderstood, misdiagnosed neurological disorder that affects as many as 1 in 100 kids. And it’s because of all the things associated with her son, Ethan, that Lederman believes properly advocating for and understanding more about Tourette is essential, for those inside the TS community and everyone else in the general public.
That is one of the messages the Ledermans hope to convey when they take part in the New Jersey Center for Tourette Syndrome and Associated Disorders’ (NJCTS) first annual statewide Tourette Syndrome Awareness Day on Sunday, April 29, with the Somerset Patriots Baseball Club at TD Bank Ballpark in Bridgewater. Lederman recently wrote the following entry on NJCTS’ popular parents blog, TSParentsOnline – online at https://njcts.org/tsparents – to stress the importance of attending Tourette Syndrome Awareness Day:
“My son slipped off a garage step, tumbled into the recycling bins — scattering cans and plastic bottle tops — and smashed my new cell phone that was in his hand onto the concrete floor. He is fine, the mess is cleaned up, and now when I use my cell phone with the shattered screen, I’m reminded for the 100th time that he has Tourette, that he tends to be clumsy because of this disorder, and that he was feeling only the first of many embarrassments to come throughout the course of his fifth-grade day.
“As parents of kids with TS, we live in homes with cracked phone screens, frequent spills, holes in walls and countless casualties of complex motor tics, scarce impulse control and fits of rage. … We are excruciatingly aware that this disorder is ours, to live with, overcome, research, treat and cure. Perhaps for this reason, I originally deleted from my inbox the notice for the first annual statewide Tourette Syndrome Awareness Day.
“And while I was grateful to NJCTS for getting this amazing event on the calendar, after several years of unrelenting TS symptoms with my son, what I felt I needed was to be a little LESS aware of TS for a day. I changed my mind after my son, frustrated by a barrage of tics, launched a football — whizzing it past my friend’s head and nailing the screen door, which jolted with the smack of metal. After my profuse apology, my friend asked, feigning curiosity, ‘Now, does he get punished for these things?’
“I’m not angry with her for asking the question, just as I’m getting better at not getting angry when in public we’re met with stares and looks loaded with judgment because he’s yelled a curse or thrown himself down in the street. I realize now that Tourette Syndrome Awareness Day is not about buying four tickets so my typically stressed-out family can enjoy a baseball game and my son has an opportunity to feel there are others like him and many supporting him — admittedly both wonderful benefits.
“The real importance of this day comes from filling the stands with as many of our relatives, friends, community members and colleagues as we possibly can, increasing our circle of understanding and surrounding ourselves with people who will support us and our children. By getting the official Tourette Syndrome Awareness Day flyer out on Facebook or Twitter, and posting it in your school, church or temple bulletin board, you can increase the chances that those who come into contact with our kids are educated about TS.
“The other real benefit comes from the funds raised from ticket sales that go 100 percent to NJCTS, the group that thankfully NEVER gets pouty, tired or bitter as I was, wanting to take a day OFF from TS awareness. They have done more than anyone to promote understanding, education and advocacy for our kids and community members with TS. So my family and I will be attending Tourette Syndrome Awareness Day, promoting the event heavily, and are challenging all members of our TS family to do the same. We really hope to see you there.”
The goal of Tourette Syndrome Awareness Day, which will feature the Patriots playing the Long Island Ducks at 1:05 p.m. (with the gates opening at noon), is to promote advocacy for TS and the programs/services of NJCTS as the only agency in the state and one that leads the nation in supporting the needs of families, professionals and researchers dealing with Tourette.
Prior to the start of the game, there will be on-field presentations in recognition of NJCTS scholarship winners, the Educator of the Year and the Healthcare Provider of the Year. These presentations will begin at approximately 12:40 p.m. Beginning at noon, kids will have the opportunity to take part in a pregame autograph session with the Patriots on the field. The first 1,500 kids in attendance also will receive a Patriots Youth Jersey, courtesy of Raritan Valley Orthodontics. Following the game, kids will be allowed to run the bases in the Diamond Derby.
Tickets to Tourette Syndrome Awareness Day are $10 and available only through NJCTS and can be obtained by visiting www.njcts.org/ts-awareness-day-2012.php. Group sales and corporate sponsorship opportunities also are available by calling 908-575-7350.
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New Jersey Center for Tourette Syndrome and Associated Disorders, Inc.
Collaborative partnerships for the TS community.