So today you are all in for a special treat! Guest blogger,TS Harrington, has written a post about her son Connor, who was diagnosed with Tourette's when he was seven years old. Connor's mother is a fantastic advocate for her son, and throughout this post you will see both her and her son's determination to not let Tourette's define their lives. Please read, enjoy, and comment!
"The Gulper Fish"
By: TS Harrington
“The Gulper Fish”. That was the nickname we gave our son when he was only a year or so old. My husband and I would watch in amusement as he would take great gulps of air and swallow them whole. How funny it seemed at the time; a cute affectation of a budding personality. It wasn’t until he was diagnosed with Tourette Syndrome at the age of 7 that we realized what we’d been seeing; those amusing little gulps were actually tics.
Over the next few years there would be other signs of tics we would be completely oblivious to. Like the moments when he would suddenly stop and press down with his neck, fists tight as could be, looking like a body builder striking a pose. The never ending clearing of his throat we thought had to do with his constant colds. The strange laugh he would do when he was overly excited.
When Connor was in second grade he began having moments of extreme panic over the smallest of slights. He would break out into hysterical sobs and wails over being asked to write in a journal or swear up and down that his name had been penned onto an obviously blank piece of paper. His teacher spent countless hours on the phone with us bemoaning his faults and her own exasperation at a situation she felt we had let get out of control. We were alternately worried, angry, frustrated and embarrassed at our son’s behaviors. It was about this time that we first noticed what we would eventually coin “Spider Man Hands”.
Connor began flexing his fingers in the same manner that Spider Man flung his web. Though, it wasn’t just for moments at a time like Spider man might have done it...it was constant. He flexed them when he opened a door or held an object. He flexed them in the car on the way home from his Grandparents house or on the way to the beach. Yet it was a slightly panicked phone call from the school Principal that brought us to our pediatrician. It seemed that Connor had begun moving his neck in a very odd manner and then following that movement by flinging both hands in the air (flexed, of course). The Principal explained that it was beginning to worry the teachers and scare the other children.
It would take almost an entire year before all of the diagnoses were in - TS, OCD, ADHD, Dyslexia, Dysgraphia, Dyscalculia, Auditory Dysfunction, Executive Dysfunction and Sensory Dysfunction. So many conditions that so many families of individuals with Tourette Syndrome are familiar with. I can still remember the moment of panic and fear when the Neurologist said the words for the first time, “Your son has Tourette’s”. I can remember wondering what his life would be like with this label affixed to him like a giant red flag. I remember worrying if he’d ever really be okay, if he would ever fit into a society where the only thing they knew about Tourette’s came from Deuce Bigalow: Male Gigolo.
Reading through the literature, however, I found that instead of fear, it instilled a sense of strength and a release of the guilt I’d been holding onto. Deep down inside, a part of me wondered if I had somehow done this to my son. That part of me had gone over and over the things I’d said and done since I first held him in my arms looking for that time that I’d not given him the right amount of love. The diagnosis wasn’t a red flag after all. It was a relief. Knowing that I hadn’t simply been a bad parent helped me to look at him in a new light. Armed with information I began to learn to speak to him in a new way. I learned that he wasn’t just sniffing to purposely drive me crazy and that when he would get ‘stuck’ on things it wasn’t because he was just as stubborn as a mule. And with this change in our dialogue he suddenly blossomed. He became once more the happy, imaginative and silly kid that I’d missed so much from when he was little.
Connor is now 10 and I’ve learned so much from him. I admire his strength in the face of such adversity. I admire his will and determination—and I know that he’s going to be okay, that he’s going to fit in, and that one day he’s going to help change the way that society views people with Tourette’s.