I've heard that when people experience life changing events, like a death of a loved one, a divorce, a lost job, they usually go through several emotional stages while adjusting to it. Sometimes it's shock, anger, sorrow, depression, loneliness, and so on. I still remember some of the stages I went through when I learned my son had Tourette Syndrome (TS for short).
Ignorance. TS? What's that? I'd never even heard the term. Fortunately for all of us, my wife had a fair amount of knowledge on the topic. It was she, who having noticed the symptoms, had kept a watchful eye on him, tracking the tell-tale signs (TICS), and recording (in her mind at least), it's progression. I was also unaware that my wife also had TS, but because hers is a mild case and she had carefully and strategically hidden it her whole life, she'd learned how to disguise it through adjustments in her mannerisms, which to the untrained eye caused it to go unnoticed.
The early stages: He was so young. First grade I think. He would TIC and we would chastise him. I think most TS parents go through that in one way or another, early on. Some of his early TICS seemed to simply be mischievous behavior normally found in a child his age. For example; he wouldn't stand still. Trying to get him to stand in line or be still when we went somewhere was just about impossible. He would jump, hop, turn around, just about anything to keep moving, to keep from being still, and to keep us hounding him to "stop doing that!"
Walking anywhere was probably the activity that got him most of my attention. He would "spin" while walking. It didn't matter where we were, or how far we were going, every few steps he would spin. After awhile my constant demands for him to "stop doing that!" caused a very slight change in his spinning. He would look up at me while he did his spin. Of course in my ignorance of TICS, I naturally assumed the look at me was just a little boy looking to see if he'd gotten away with his misbehavior, or a look of anticipation in wait of the parental demand to "knock it off!"
Soon, more TICS began to surface and become a regular occurrence. He would smell just about everything. It didn't matter what it was, his desk, his eraser, a piece of paper, a pencil, clothing, food, if it got into his hand, or near him, he would smell it. Cute at first. Even funny. But one TIC led to another and soon there were several, and no matter how sternly he was told to "stop doing that" he just wouldn't stop. It was as if.... he couldn't.
Denial: Finally my wife told me of her suspicions, that his TICs could be a sign of TS. Once she explained what TS was and how she could see the symptoms I began to understand. Along with her explanation of the disorder, I also read what I could find on the subject. "Not my child," I thought to myself. There was a period (not long-lived), during which I seemed to think that if I wished it away it would just go away. But acceptance came quickly. Partly due to my wife helping me to understand how the disorder works, and partly out of love for my son which then brought on the guilt.
Guilt: What could have caused it? Certainly people can't be born with this then suddenly, at a certain age start exhibiting all these behaviors... can they? Did I cause it to happen? Had I been too strict? Not loving enough? Had all my demands to "stop doing that" caused it? Should I have done something differently? Where had I gone wrong? How could I make it go away? Prayer!? Was that the answer? I prayed and prayed for the longest time, asking God to take it away from him, and give it to me instead. If that prayer had a name, I'm sure it would be called The Parents Prayer. It's probably prayed each time a parent learns of their child's burden.
In the search for causes, what it is, how it happens, and how to deal with it, the guilt finally subsides. I've heard people say, knowledge is a wonderful thing. For me, knowledge about TS was how I recovered from the guilt.
Pity: Pity was just a natural reaction I think. I mean, how can you avoid it? Watching this young child experience these physical changes that keep happening to him, some painful, some annoying, most embarrassing, not being able to stop them, and all along the child doesn't know why it's happening. My wife and I probably leaned on each other the most through this stage. We were careful to not show it, especially to him. It's something we shared only with each other. There were many venting sessions, shared tears, releases of anger, and other pity-driven emotions that only we could understand... and share. Pity eventually led to worry.
Worry: Like any parent, worry accompanies just about everything concerning their children. TS was no exception. How will he adjust? What will he feel about himself? How will he be accepted? What if it gets worse? How much pain does it cause? What about his social life? His self-esteem? School? Jobs? His whole future, all in one constant daily worry. Much to our surprise most of the things we worried about were a waste of energy. Isn't that how worry usually turns out? But, worry soon (for me at least) turned to being very defensive on his behalf.
Defensive: TS is not a well known disorder. Even worse, the TICS which accompany TS are misunderstood by about 99.999% of the population. There are hundreds of TICS. Involuntary physical movements and sounds. They are obvious and almost always get the attention of anyone close by, especially in social settings like classrooms. School was the first place that brought out my defensiveness. I was OK with other children not understanding. Staring, giggling, thinking something is wrong with him. Those are to be expected from children. Teachers on the other hand, well there's where my patience and understanding ended. I had a run in or two with teachers and school administrators, whose ignorance I found unacceptable. I also found myself shooting daggers with my eyes at people in public places (like restaurants, supermarkets etc), who would stare or keep looking over at him, and me, as though he should "stop doing that!" With time and a clear understanding of not only TS, but also people's natural ignorance and curiosity, I learned to keep my quick overly defensive reactions within the socially acceptable range.
Understanding: People don't understand. They probably never will. Why should they? One of the most helpful and progressive stages of being a TS parent was learning to understand. Learning as much as I can about TS and learning as much as my child is willing to share with me about the struggles it causes him. Understanding the issues that accompany TS come only after learning to understand how the disorder works, from trying to understand how the TS child feels and copes, and understanding that the various everyday reactions from strangers is simply human nature and their own understanding or not. Reaching the understanding stage takes a long time, a large amount of research, continuous observation, incredible patience, the ability to adjust and accept constant change, sympathy without pity, empathy, and hope.
Hope: Never ever ever give up. I think that's a Winston Churchill quote. Wiser words are not often spoken. TS has so many variables. It's effects keep changing and are felt in different ways, by different people. Some find that as they age many of the symptoms diminish, while others find they increase. Some are able to function naturally, while others find some medications may help. There seems to be as many ways of coping as there are people who suffer with TS. Through all of it studies go on, research continues, and a hope for a cure remains.
http://www.tsa-usa.org/
