The Ugly Truth about Tourette

A personal story

“Three years ago my son was diagnosed with Tourette Syndrome.

This is the ugly truth about Tourette no one tells you during diagnosis….

When my son was diagnosed I had no idea what Tourette Syndrome was or what to even expect. The neurologist said he would “eventually grow out of it”…Some times, still to this day, I hope he does. But I know he never will. The neurologist told us to keep him away from anything that triggered his tics, but what triggered his tics, made him happy. Excitement and love. How was I expected to pull him away from something that made him happy or pull him away from something that he loved? The reality of it was, I wasn’t going to.

I wasn’t told the pain I would feel as a parent-the pain my family would feel as a whole. The “there is no cure for this” killed me. How could MY BABY be diagnosed with something that has no cure? Why my kid? My family and I were crushed. I was terrified of the unknown. The what ifs consumed my life for the first year and a weekly crying spree eventually started. Would he live a normal life? Would he get picked on? Would he ever find someone to love him? It was a daily battle to look at my sweet boy and see this ‘disability’ slowly take over him.

I wasn’t told I would have to go to my child’s school to have ‘yearly educational meetings’ to educate the staff on what Tourette Syndrome was, and how to handle the tics if they arose. I wasn’t told the tics would get worse. I wasn’t told more tics would develop, the headaches, and I sure as hell wasn’t told the pain it would cause my child. To many tics a day would cause leg pain at night. SEVER leg pain-laying on the bathroom floor crying because he can’t get up, sleepless nights for me rubbing his legs to help the pain go away, massaging his legs in the waiting room while we wait to get his hair cut-also during his hair cut. Why didn’t anyone tell me what to expect? Why didn’t anyone tell me the pain it would cause my child?

Three years later and I think I have finally found out why no one told me what to expect. I use to hate talking about my son having Tourette, only because my heart still couldn’t face reality. Three years later and I’m finding myself educating myself, my family, friends, teachers and staff, and random people that pass by. Baseball season this year-tics were in full force when he made it on base because he was thrilled. A wonderful lady sitting beside me taking pictures of my son and his team asked about his hand movements. Three years ago, I wouldn’t have had the heart to tell her, but now, it just came out so calm and easy “He has Tourette Syndrome and when he gets excited, that’s what he does”. As a parent you expect a perfect child and you expect them to grow up and live happy NORMAL lives. But really, what’s so fun in being normal? Being normal is boring and causes a boring life. My child is the sweetest, most loving child I have ever known. I am a proud parent of someone with Tourette. Looking back, letting the what ifs consume my life was silly. My child lives a normal life, my child doesn’t get picked on (yet) and my child does have someone who loves him-he has God and an entire family behind him.

Chin up buttercup, you have someone standing behind you no matter what.”