I am the mother of a teenaged son with a difference. It is a difference that others can see, though my son was not born with it. More importantly, it is a difference that can change in days, hours, or even minutes. What is easy today is harder tomorrow, and vice versa. Even the diagnosis and prognosis may change. And therein lies the real challenge!
At the age of 13, my son Zachary was diagnosed with a tic disorder. It may be Tourette’s Syndrome, or it may not. How will we know? If it goes away, it was a tic disorder. If it doesn’t, it’s Tourette’s Syndrome. The uncertainty is annoying, but honestly, the label does not matter. What matters is how my son sees himself in light of this difference.
Zach’s tics began with a very subtle tapping of one foot on the other. Then, he was flicking his left arm as if practicing his pitching. The foot tapping ended and we noticed some blinking, but he wears contact lenses, so we ignored it. Then, the blinking was gone, but he was clearing his throat – once or twice a minute, then more often. At one point, he was clearing his throat more than 60 times a minute! There was no ignoring that Zach had Tourette’s Syndrome.
Zachs’s diagnosis was made at the end of eighth grade. In preparation for the transition to high school, I met with the school district child study team. I was asked, “What accommodations can we put in place for Zach?” That is the most difficult question to answer on behalf of a child with Tourette’s Syndrome. Zachary can leave for school in the morning with one set of tics and come home in the afternoon with another set. A tic can appear in the blink of an eye (pun intended!) and disappear just as quickly. We can arrange for a private testing location for standardized testing (so that his throat clearing does not disturb his classmates) only for him to have no vocal tics the day of the exam. Trying to make arrangements for Zach at school is like shooting at a moving target!
Having said all of this, Zach has relatively mild symptoms. Besides the ever-changing array of motor and vocal tics (though not the stereotyped shouting of obscenities…yet), Zach has none of the other symptoms associated with Tourette’s syndrome, such as attention issues or obsessive-compulsive behaviors. He has slight anxiety, but unfortunately, many teenagers in 2013 have anxiety. He has missed no school because of his symptoms, and he participates in sports and co-curricular activities with his peers. Zach has a driver’s permit (something we were not sure that he would be allowed medically), and so far, the tics have not interfered with his driving. Zachary does not define himself by Tourette’s Syndrome, and the people in his life appear to accept his tics as a part of him, like his red hair and his terrific ping pong skills. At home, Zachary’s tics are part of our “new normal.” My younger son, who at one time was embarrassed by his brother’s random movements and vocalizations, recently commented that Zach’s tics had almost disappeared and that his friends probably thought that the tic disorder was gone. This is not even remotely the case (objectively, the tics have worsened with puberty), but Tourette’s Syndrome had become irrelevant to family and friends.
We are now focusing on choosing the colleges to which Zach will apply in the fall. (Oh my gosh! I’m sending my son off to college where an entirely new group of people will observe his difference and draw conclusions about him as a person! He can handle it, but can I?) Recently, I suggested that Zach write one of his college essays about living with Tourette’s Syndrome. His reply? “I’m not about that!” “But that is something that makes you different from the other applicants, gives you a unique perspective on the world and a greater ability to accept others for who they are, “ I stress. “Nah,” he repeated. “Tourette’s is not what makes me different. Wanting to start a ping pong team is what makes me different!” And that was the end of that!