TAA NYC

In Support of Support Groups

 

by Nancy Fried (March/April 2000)

 

I am a single parent raising a child with Tourette Syndrome. It has been a difficult road at times, but the support offered me through a parent group when I first began this journey has provided an important bridge toward understanding and acceptance of my son and his TS.

 

I have now organized several additional support groups, which I maintain and attend. I can't emphasize their importance enough. I can still find great comfort, even now, when I go through a bad patch. I sit among other parents and look around at the circle of faces, many of which I have come to know.

 

When my son was diagnosed eight years ago at age twelve, my husband and I, stunned by the news, tried to come to terms with this bizarre illness. He succeeded almost immediately, using denial as his suit of armor. I plunged into a black sadness for three months, staying at home, clinging to my pillow and the memories of my son's early years - the normalcy, the "everydayness" of his beginnings. Why had this affliction chosen us? Why had it chosen me? I slowly started to realize that my son needed more help than I did. He was ill; I was not. So, one day I sat up in bed, reached for the telephone and dialed the Tourette Syndrome Association. They gave me the location of a nearby support group. I went to the very next meeting, held in a church in Brooklyn, sat in a tight circle with ten other parents, and cried. I cried for ninety minutes, unable to stop. They let me cry, but they hugged me, patted my arm and said I would soon start to feel better. And I did.

 

I returned for several more Sunday afternoon meetings. Sometimes there were new faces; sometimes old ones reappeared. I started to feel less alone. Just being with other parents gave me comfort even if I was not able to speak. Their kind gestures and soft words of encouragement became like a cloak that I could wrap myself in as I went home.

 

They offered suggestions about handling behavior problems, gave me the names of Tourette specialists, talked to me about their experiences with their children, and told me about medications and schools. I also started to read everything I could about Tourette Syndrome. I attended meetings of the New York Chapter of the Tourette Syndrome Association and medical seminars and chatted with other parents and medical experts. I started to feel stronger and better able to deal with my son and his illness.

 

I started to make friends with TS. I also began to make friends with my son, who was twelve at the time. I stopped fighting and screaming at him and criticizing his odd behaviors. I wanted him to stop the "jerky" movements: hitting his right thigh with his fist; walking in a zigzag pattern on the sidewalk alongside me; touching the sides of buildings; uttering stuttering sounds; jutting out his legs in sharp movements as we sat together on a bus. Some people would stare; I grew used to it and in time, oblivious. The tension started to ease among the three of us.

 

It has taken many years for us to reach today's level of cautious acceptance, jarred on occasion by rage attacks that we learned to manage, mild obsessive behaviors, and impulsivity. It has been a long road. I have worked hard. I have become an advocate for him and have become a volunteer for our local chapter of the national Tourette Syndrome Association. My son has decided to transfer college credits and will be entering a State University this fall as a junior, living away from home for the first time.

 

My friends pat me on the back. "Job well done," are the words I see reflected in their kind eyes.

 

I smile, vividly remembering the parent support group I sat amidst for so many months, so many years ago. They are the ones who should get the credit. They are the ones who hoisted my sail and gently guided my small boat out into the harbor and helped me set a course for the open sea.

 

The thanks go to them.