My name is Karen and my son Zackary has Tourette’s Syndrome. When Zackary was 5 years old, a neighbor of mine asked me why he squinted so much. My first thought was maybe he needs glasses. As the weeks went by, I started to notice other things: He would clear his throat over and over again, and he would shake his head and extend his arms and shake his hands.
When I asked him why he was doing this, he would always answer with, “I don’t know.” I took him to a pediatric neurologist. Sitting there waiting to find out what was wrong with my little boy was one of the worst moments of my life. When the doctor told me my son had ADHD, OCD and Tourette’s Syndrome, the first question I asked him is now the first question I am asked when I tell anyone about his diagnoses: “Is he going to curse?”
Back then that is all I knew about Tourette’s Syndrome. I left the doctor’s office and immediately set out to change that. I read everything I could about Tourette’s. I did all the webinars I could find. I started keeping notes of his different tics and how long they lasted. I was determined to understand this thing that had taken over my little boy’s body and do anything in my power to help him.
My doctor told me when Zack was diagnosed that it would get 100 percent worse before it got any better. He was right. It has been almost 2 years, and I have watched my son getting worse — sometimes by the day, it seems. He has pulled muscles in his sides from ticking, thrown his head back and forth so hard I was afraid he would hurt himself and become extremely verbal.
I have watched as strangers have stared at my son and pulled their children away from him as if he had something they could catch. Tourette’s has changed all our lives so much. We have had to do things like put a booster chair in our kitchen for when his tics are really bad so he doesn’t hit his face on the table. Stairs have become a constant source of stress; I am always so worried he is going to have a tic and fall down them.
My other children have had to adjust to Zack’s different tics and have learned to be patient with him when he is having a bad day. They calm him down when he is having an “outburst” and are his greatest protectors.
The one thing I always tell people about Tourette’s is it is never the same, not from person to person or day to day. Tourette’s is a constant learning experience for me. Every day brings a new set of challenges.