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.
He put everyone at ease, explaining how he was there to put a face to numbers in the budget, and how he relates to parents of children with special needs because he has a daughter with Down Syndrome. He was immediately warm, interested and easy to talk to.
I was prepared to tell the Senator about the countless ways NJCTS had helped us—about how shortly after diagnosis six years ago, they got us to our first counseling session at the Rutgers TS Clinic. And how since then, they had provided doctor referrals, yearly school in-services, counselled and renewed us annually at Camp Bernie, and most significantly, put us in touch with the family network who would ultimately give us the courage to hospitalize our son, a decision that saved all our lives.
Since then, they have directed us to Overlook Medical Center for a clinical trial of a new TS drug. Ethan is a participant in the study, and we are hopeful for the first time in a very long time that there is light ahead for us.
Out of all of this, what I actually got out of my mouth was one sentence before Ethan interrupted and asked respectfully, “Mom, can I talk?” And then he put things in HIS words, without vocal tics, stutters or hesitation. He talked about feeling alone and sorry for himself until he met other kids with TS at Camp Bernie. He recounted how awful life was with severe tics and OCD and how we made the decision for him to enter the hospital because NJCTS put us in touch with people who had been there, and how it had saved his life. I couldn’t have said it better.
Senator Sweeney stayed for pictures after the press conference, thanked the kids warmly, and praised them on their bravery and eloquence. He commented that kids like those in front of him were doing well because their families found a place where they could get information and, as a parent himself, with a child with a disability, he believes that “knowledge is king.”
The grant funds assure that, at least for now, the knowledge will be there for us when we need it most, to better our kids’ lives at home and school, to assist doctors and researchers in finding better treatment, and to help us make better futures for our kids whose childhoods are often lost, mired in struggle and torment.
As the parent of a child with any kind of special needs knows, the days feel lonely, and interactions with friends and peers can make you feel even more isolated. Beyond the grant money that Senator Sweeney championed for our cause, the time he took to visit NJCTS and its families reinforced for us that our stories had been heard and that they matter. And I for one felt like, at least as long as he has a say in the matter, we’re not alone.
Thank you Senator Sweeney, and as always, thank you NJCTS.
Beautifully written Tracy! It was a privilege to hear Ethan and you speak that day.