“Tourette Syndrome: Coping With Difference” — Inquiry

The following is part 2 of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio. Read part 1 here.

In the book “Pathways For Inquiry,” Marian L. Martinello describes the inquiry process as our tool for navigating through increasingly complex and confusing data in the search for meaning in all the topics and times of our lives.

Interdisciplinary inquiry lends a voice, not only to my own knowledge and experiences, but across a variety of perspectives or points-of-view. My own experiences in difference led me to believe that I stood alone, but the truth is that everyone walks in the shoes of difference at varying points in their lifetime. In order to understand the perspectives of difference, it is essential to see it from the points-of-view from the wider audience.

I cannot base the truth on my biased opinion and those memories of what it was like to experience those days of unjust labels nor Jacob’s experiences so far. I want Jacob to find comfort in his chosen place and never long for what seems to be the perfect world of another. I often think of the following quote:

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”
— Albert Einstein (“Everybody is a Genius”, n.d.)

In our differences, we are the fish longing to climb the trees that others seem to so flawlessly climb. This inquiry is my own personal quest to find, not only answers, but to also question the answers I have found throughout my research of TS.

Jacob has been having motor tics for as long as we can remember, Barely a month after his birth both of his femurs were broken nearly in half. Doctors informed us it was due to the fact that he was so tiny, barely a pound, and his legs were constantly in motion.

Looking back, that could have very well been the moment that the tics became visible. After six months in the hospital, he finally came home and the tics began to increase, although we weren’t aware at the time what the name for those movements were.

For six years we watched as Jacob began to twist his entire body from head to toe as if he was having a fully body tantrum. To be honest, at first, we thought it was cute because he always had, and still does, what looked like a smile on his face while having tics.

When he was in kindergarten, we finally suspected that the movements were more than just a typical part of his development. We consulted his doctors and after nearly two years of begging, they sent him to see a neurologist in 2008 and he was diagnosed as having a tic disorder since the motor tics were the only tic present at the time. In the summer of 2011, my husband and I noticed that every time Jacob would start having tics he would make a small grunting sound.

As the sounds became more prominent, it was obvious that another trip to the neurologist was necessary. Not even a month after turning 10 years old, Jacob was officially diagnosed as having TS.

The goal of this inquiry isn’t just to learn about TS as a condition, the goal is to understand the underlying affects of Tourette, the “inner battles” that an individual with TS must face each day. My goal is to help Jacob cope and I know there is no one solution for everyone so my goal is to find others with TS and have them share their stories.

Their ways of coping and thinking will greatly differ from Jacob’s situation. The idea is to formulate a plan that will not give Jacob the perfect solution to helping him cope, but ways that we can work together to build his self esteem and help him realize the opportunities that lie within his difference.

I was very unaware of where to begin my search. I had spent countless hours doing internet searches about TS when Jacob was initially diagnosed, but knowing what TS is doesn’t tackle the question of how it feels to have TS. I have asked that question to Jacob many times, but I’m not sure he has truly grasped the idea that TS will have such a great impact on his behavior, his ideas, and his attitude toward the view others will have about him and TS.

After reading Front of the Class by Brad Cohen, I decided the best methodology would be to conduct interviews with other individuals with TS. Before I had read the book, I had not realized just how much TS has gone misunderstood.

Cohen spent a great part of his childhood being called out in class by his teachers for being disruptive and misbehaved, and his father thinking that his tics were controllable and deliberate. His mother, although frustrated, was supportive and worked tremendously hard to find a diagnosis for Cohen’s tics (Cohen & Wysocky, 2008).

In the book and film, Cohen describes his desire to work past his tics and become the teacher he never had. I tried to imagine myself in Cohen’s shoes and despite my best effort, it’s nearly impossible to feel another’s physical and mental struggles within a space you have never been confined to. I could, however, see how individuals with TS could relate to one another.

While I hesitated to include the definition of TS because I wanted my focus to be the emotional aspect, I realized that one reason Tourette is so misunderstood is because people are grossly unaware of what TS is. Education will, although not always, broaden a person’s ability to replace ignorance with compassion.

I’ve always wondered how people could so easily judge something that they know nothing about. My grandmother blessed me with the ability of remaining humble and kind despite having the reasons to behave the opposite. Sure, I’m guilty of saying things and behaving in manners that were less than honorable, but somewhere in the depth of my being I truly do try to always carry the best of good intentions.

According to the Tourette Syndrome Association (2011), TS is defined as a neurological disorder that is characterized by involuntary, rapid, sudden movement and/or vocal outbursts that occur in a repetitive pattern.  These movements and vocal sounds/outbursts are called tics.

TS has been overly exaggerated in the media as being a condition that involves cursing and making obscene gestures (Tourette Syndrome Association [TSA], 2011).  This version called Coprolalia does exist in the TS population although it affects only around 15 percent of those with TS (TSA, 2011).

In most instances when I have mentioned that Jacob has TS, the first question has been “How often does he curse?” This question cements the fact that TS is far much more misunderstood that I even realized. It would take hundreds of pages to correctly identify and define TS as a whole. It comes in many different forms and severity.

There are differing views on whether or not TS is an inherited disorder and both my husband and I have combed over ourselves to determine if we were the culprits. We fall into the category of “unknown” and this makes for an even more frustrating case for finding answers. If we can’t find the truth within the facts, how on Earth am I going to be able to find the answers to the questions I have that concern Jacob’s ability to embrace his difference?

Read more from me on my Embracing Difference page on Facebook.

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