Our son, Ethan, turned 12 last week in a residential treatment facility more than 1,000 miles from home. It’s a hospital in Wisconsin specializing in the treatment of kids with tic disorders and debilitating obsessive compulsive disorder, resistant to the medicines and therapies typically tried.
Sending our son away for residential treatment was never an option for us — until it was our ONLY option. A life-changer — both financially and psychologically — NS a minefield of parental guilt and self-doubt, it is a bold move, but our only hope for even close to a normal life for him.
As parents of kids with Tourette Syndrome know, our kids see profound suffering throughout their young years, and the pain can be unbearable for those of us who die a hundred deaths along with them — when the calls for playdate invites stop altogether. When he gets yelled at by the bus driver or substitute teacher again for things he can’t help. And when a crowd on the street erupts in laughter when OCD has him stuck in an embarrassing ritual.
When Ethan comes home from Wisconsin months from now, we’ll rely on health-care providers locally and hope they’ll have the knowledge and experience to manage his after care.
Realistically, however, we know the paucity of research, funding and academic programming devoted to the education, treatment and a cure for TS makes this much less likely than it would be with most any other illness or disorder.
Treatment options are severely limited, money for research scarce and, despite the relentless efforts of groups such as the New Jersey Center for Tourette Syndrome & Associated Disorders, the stigma still hangs over the hearts and heads of our loved ones.
We all have a rare and precious chance to change this though. By going to POPVOX and writing your local Congressperson, you can urge them to support H.R. 146: the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2013.
This bill proposes to expand, intensify and coordinate programs and activities of the NIH with respect to Tourette Syndrome, providing funds to create centers of excellence charged with expanding research efforts that include investigations into the cause, diagnosis, early detection, prevention, control and treatment of TS.
Please encourage everyone you know to write Congress on your behalf. Go to the POPVOX link and then share it with others. While New Jersey is on the forefront of resources for members of its Tourette community, with support and programs by NJCTS and the promise of the NJCTS Cell/ Sharing Repository, even here, it’s not enough to soothe the suffering, isolation and ignorance that is Tourette Syndrome.
I’ve left my comment at POPVOX and registered my vote. Now you can do the same. Don’t let this opportunity pass you by. It only takes a few seconds and is very easy. Do it today!