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"Have you counted your blessings lately?"
(The story of our path to a Tourette syndrome diagnosis.)
That was how my friends and I greeted each other during a traumatic year of too much tragic death all around us. It seemed that the tragedies would never end, as we watched mothers with cancer struggle to say good-bye to their youngsters and youngsters struggle with grief as unexpected deaths struck their friends and parents. That year put the little stuff into perspective for us. We were blessed with good health and more. That perception would steer me through the rest of the year as it unfolded, teaching us about life with a body that sometimes goes on auto-pilot.
While our older son seemed oblivious to the number of deaths and tragedy our family experienced in six months, our son who was seven at the time just couldn’t seem to weather so much tragedy. He sunk deeper into despair and depression over each death. He began to bang his head at school, withdraw and cry daily. His teachers and we were concerned, as prior to the trauma, he had been a happy, sociable, academically successful, well-behaved child with many friends and a delightful personality. We couldn’t penetrate his grief. He was bright enough to keep his grades up, but he essentially missed that entire year of school, with everyone questioning what kind of future was in store for him, as he appeared to become depressed, anxiety-ridden, disorganized and with attentional difficulties. During this period, he met the diagnostic criterion for post-traumatic stress disorder and major depression.
After yet another tragic death, I cried in desperation to a friend as we observed my son from a distance, making unusual movements and in his own little world. I was concerned about his level of depression. The head banging continued, and we had been repeatedly to the allergist and pediatrician about an asthma-like cough and sniffing, and to the eye Dr. for blinking and eye-rolling. Now he was also thrusting his shoulders. My friend told me that she thought my son had Tourette Syndrome, like her child (unbeknownst to me). She passed along all of her literature about Tourette's, along with a warning NOT to believe everything I read, to be wary of the gloom-and-doomers I’d inevitably encounter, to cautiously interpret everything I heard from others, and to give myself a year to get used to our new reality. She let me know that Tourette was not a big issue in their lives, which was pretty clear since I’d never even known her child had Tourette's !
I immersed myself in all the reading I could find, and quickly became overwhelmed and panic-stricken by the thought that my youngster would never overcome the depression, hampered as I thought he was by a neurological condition that seemed to be associated with a high level of psychopathology. I realized immediately that our son met the diagnostic criterion for Tourette's disorder. But, in spite of my friend’s warning, I was confused at how different he was (pre-trauma) from everything I read. He had never been a particularly difficult child, either socially, academically, or behaviorally. In fact, he was a bright, delightful, sociable, easy-going and charming child. He just had tics. And he wasn’t able to let go of the deaths. He definitely had horrible handwriting, which had deteriorated immediately after his exposure to a traumatic accident. But he didn’t seem to have learning issues. He hadn't been an angry or impulsive or socially difficult child. Why didn’t I read about children like him? What was the role of Tourette's versus the trauma he had been exposed to in the developing symptoms? I began to assume that my child would eventually present with (or never overcome) the issues associated with Tourette's in the literature, and I cried for months as I prepared myself for the worst.
My reading and research led me to expect that my son was a future serial killer or, at best, a child who would develop severe impulsivity, aggression, learning disabilities, bipolar disorder, and conduct disorders! Why didn’t the literature about Tourette syndrome seem to fit this child?
The pursuit of that answer led me online and to a better understanding of the issues surrounding the literature and support groups. After this experience with the bias in much of the literature about TS, we also experienced firsthand the common lack of understanding and knowledge about Tourette syndrome by so many specialists. All of the physicians we saw initially had faulty knowledge of Tourette's. One Dr. said it couldn’t be TS because our son was successful in school and a child with TS couldn’t be doing well academically. One said it wasn’t TS because he wasn’t "barking, meowing, grunting, or squealing." Another said that it couldn’t be Tourette's because "TS was the worst pediatric diagnosis imaginable" and "no one in our family presented with those problems." Finally, a psychiatrist agreed that it was Tourette's syndrome and wanted to start him on a potent neuroleptic (antipsychotic) right away for tics, even though the worst of the tics were long gone and a lingering depression was our main concern. Fortunately, I had found a group of friends online who gave me more help and answers than I would find with medical specialists.
After a year, we gradually realized that our older son had displayed even a wider variety of tics than our younger son had, and yet he had benefited from escaping our scrutiny, as we just assumed that these tics would pass, and he had had a carefree childhood.
Today, we live regular lives, just like the folks next door. Perhaps their concerns are slightly different than ours — maybe ailing parents or job difficulties, where we are now more concerned with girlfriends, college admissions, and teenage driving. But we are no more troubled than most folks. Some awful people told me once that I must be in denial if I thought life with Tourette Syndrome could be "normal." That is one of the most hurtful things that can happen to a newcomer to support groups. Well, ten years later, I can say that our lives are not "normal": both of our sons excel on stage, won awards academically, athletically and in the arts, and are fine, polite, well-behaved young men. So, who needs "normal," anyway? Tourette's no longer figures on our radar screen of Difficult Things That Happen in Life.
One of my online friends is known for "inventing" — her creative approach to life with an intriguing condition. From her, I’ve learned to not believe in cookie-cutter lists of strategies: each person with Tourette's is unique.
We began to learn about the vast and fascinating place that is the mind of a person with TS. I recognized that my son’s main problem was not the tics, but the underlying depression from ruminating over the deaths he had been exposed to. I learned all I could about Tourette's and obsessive-compulsive symptoms — what was likely to be going through his mind, his intrusive thoughts about death and his inability to let go of it. We began to recognize the obsessive component to his grief and to approach it with a combination of strategies for post-traumatic stress and those used in cognitive behavioral therapy. As we learned about Tourette Syndrome treatment, I became wary of the overall effects of medication and "fired" the doctor who had wanted to start him on Risperdal. As his depression lifted, the tics lessened.
Years later, the tics are largely gone, and never as severe as they were when the stress and depression exacerbated them. When they were at their peak, we drew a cease-fire with the tics and accepted the waxing and waning nature of them — knowing that they always lessened helped us wait out the times of increased ticcing. Understanding and learning about Tourette's, combined with a good school situation, was what we most needed to get back on an even keel. He’s a happy, well-adjusted young man with many friends who won awards in school, got good grades, and has traits not always shared by his peers, probably influenced by his adaptation to life with Tourette Syndrome. He is the best friend his friends could ever hope to have. He’s an uncommonly compassionate, kind, creative and intuitive person. He had a knowledge of human nature that is surprising when he was a child. He loves animals and is very spiritual. He’s devoted to any endeavor he undertakes. As a friend of mine once told me, "He’s an old soul."
Today, years later, both boys are medication-free and doing well with lots of friends, a too-busy social calendar, and girlfriends <yikes>. They have their ups and downs just like everyone else, with or without Tourette's. They don't pick up their socks or put down the toilet seat <grin>, but they’re mostly thoughtful, polite, creative young men to be proud of — just like most young men their age. And they tic! So what? Some children who have Tourette's syndrome complicated by other diagnoses or environmental difficulties may not have it easy, and each child with TS is unique. Nevertheless, most Tourette's is NOT severe.
The purpose of "Now What? — So What?" is to help you question the literature about Tourette Syndrome. Most researchers readily acknowledge that the majority of folks with TS do well and require no medication. If the descriptions of Tourette Syndrome you’ve read "fit" for you, then you’ve found information that may be helpful to you or that describes your needs. But, if your situation doesn’t fit what you’ve read, you may be wondering why, like I was. Or you may be incorrectly or nervously assuming that your child will present with issues that will never come to pass, and this is a sad thing to have happen during the years you should be relaxing and enjoying your child and giving him or her all the support and love and limits and boundaries that he or she will need to go on and live a positive, well-adjusted life with or without a neurological condition. If you’re not at peace with Tourette's, your child will know it and this anxiety and tension may actually cause an increase in tics.
"Prognosis is more important than diagnosis" — a saying coined by another friend who happens to have Tourette Syndome. If parents can move beyond the diagnoses and look at prognosis, the research literature is optimistic. More and more peer-reviewed, journal-published research (the standard you should watch for) points towards an increasingly optimistic prognosis for persons with Tourette's. And an optimistic approach can only help children adapt to the real world, with no excuses for behavior that may or may not be attributed to neurological differences, but with plenty of love and understanding and support. Parents need not be robbed of the joy of raising a child with or without Tourette Syndrome. My friend whose child has TS had warned me about what I would encounter, but I was still unprepared for the many parents of children with TS who insisted that "it would happen to me, too" or "my child would get worse," or "you’re just in denial!" The friend was right, and the others have been wrong. My son’s Tourette's was at its worst to date when it came to our attention, and it improved with our education and understanding. I hope I can help other parents of newly-diagnosed children avoid a negative experience and see the positives and their blessings.
I still don’t understand any statement that begins with "these kids" followed usually by the word "can't" — as if children with Tourette's are all alike and somehow defective.
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Strengths and advantages associated with Tourette's syndrome
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
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