In May 2006, my husband Steve and I sat in a small conference room at Children’s Mercy Hospital in Kansas City. I could sense tension in the air immediately as the team of physicians and social workers filed in to the room. Each wore a smile, but despite their friendly glances, I knew they were going to tell us something we were not going to like.
Two weeks earlier, we brought our 4-year old daughter, Hannah, to the Developmental and Behavioral Clinic for evaluation. Hannah had been shaking her hands in a rapid, flapping style since she was less than 2 years old. Even though Hannah was bright and communicative for her age, we worried about autism. We had prepared ourselves for autism. We expected the evaluating team to say autism. But, they didn’t. They said, “Your daughter has Tourette syndrome.”
Tourette syndrome … Tourette syndrome … Tourette syndrome. The words rang in my ears. All I could think of were the stereotypical portrayals of Tourette syndrome in the media. Cursing, eye-blinking, and jerking – was this to be my daughter’s future? Suddenly, the conference room felt very hot. The heat grew in my face, my hands starting shaking, and my lower lip began to tremble. My eyes welled with tears. “How is this possible?” the voice inside my head screamed.
The kind and compassionate team of doctors went on to explain exactly how it was possible. They described the several vocal and motor tics they had observed during the course of their evaluation. I looked over at Steve to see him shifting in his seat and wringing his hands, the way he always does when he gets nervous. I wanted nothing more in that moment than to leave, pretending we never brought Hannah in for evaluation. Of course, we stayed.
We asked as many questions as we could think of in those first startled moments. Thankfully, we received reassuring and comforting replies from the knowledgeable team of experts. They also pointed us in the direction of several helpful resources.
I learned in the following days and weeks that many of our initial fears about Tourette syndrome (TS) were unfounded. Only an estimated 10-15% of those with TS experience tics involving cursing or obscene gestures. Tourette syndrome does not impair intelligence and most individuals with TS lead productive, fulfilling lives. I also discovered that there are varying degrees of severity and Hannah’s case is mild.
Today, Hannah is a happy and well-adjusted 11-year old. She is accepted by her peers and excels in school. Hannah takes medication to reduce the frequency of her tics; however, the overall impact of Tourette syndrome on her life is minimal.
I think back to that day in May 2006, when Hannah’s diagnosis took us by surprise. I realize that a diagnosis of autism, though more expected, would not have been any easier. Most likely, it would have been far more difficult. It’s challenging to learn that your child is not perfect in every possible way. There were days when Steve and I didn’t handle the news as well as we could have, but we’re not perfect either. Today, I’m so thankful for our beautifully imperfect family, tics and all.