Living With the Puppet Master
Throughout my life I have been in various situations where I felt like I had no control. However, I never really knew what feeling completely powerless was like until my middle child was diagnosed with Tourette’s syndrome, a little-understood neurological disorder with no cure or treatment.
Jayden squeezed his eyes shut so hard it seemed as if he was trying to make his eyes disappear altogether. I had seen other people with this particular habit so I didn’t speculate on it too much. It wasn’t until he started shrugging his shoulders repetitively that I took notice. I turned to my good ol’ friend, Google. The words I typed into the long rectangular box were “child with shoulder tic”. A page flooded with informational sites and forums of concerned parents looking for answers in regards to their own child’s tics appeared. One word connected each entry: “Tourette’s”. I thought to myself, “Tourette’s? But isn’t that a foul language disorder? My son doesn’t do that.” I did another search with different wording. Then another. And another. Every single time, I got the same results; the kindling that ignited the fire inside me to do everything within my power to help my son.
I educated myself on TS so extensively that I couldn’t extract any new information on the subject. The more I learned, the more I noticed Jayden’s more subtle tics that had previously gone unnoticed. As soon as I came to the conclusion that he did in fact have Tourette’s syndrome, it vanished without a trace. It wasn’t until two years later when he started 1st grade that the TS decided to return. The eye blinking brought a new friend with it, which caused Jayden’s eyes to roll into the back of his head. His hands felt left out and decided they wanted to join the party with a little bit of fist clenching. This made holding a pencil decidedly difficult. All of a sudden TS was interfering with my child’s life! Something had to be done.
It took over a year of jumping though the school board’s and my medical insurance company’s hoops to get a diagnosis. With that, the school transformed into one of Jayden’s most important support systems. His education has been saved. His life, on the other hand, could be an entirely different story.
Jayden is fairing exceptionally well despite his constant companion. He is highly intelligent and quickly wins the hearts of anyone who has the pleasure to converse with him; conversations that are becoming increasingly difficult and drawn out. Some of his new tics interfere with his speaking, kind of like a stutter, but more like a breath blown out, silently stealing his voice. As time goes by and adolescence draws nearer, the tics become more complicated, frequent, and intense. Sometimes I can hear a quiet whispering of the word, “Ow.” escape his mouth as he succumbs to his puppeteer. There is nothing I can do about it. I am powerless against the puppet master that has taken my son hostage.