NOTE: The is the first of three parts introducing AndreaF’s book about her life as a mother of a child with Tourette Syndrome.
As of today, Stink is still doing awesome on the Intuniv. On a scale of 1 – 10, I’d give his tics a 2. If you didn’t know he had Tourette Syndrome, you might not suspect a thing. Of course, if he plays computers a lot one day, his eye tics are more prominent. It’s just the nature of the beast. It’s an easy fix: Live a balanced life.
On another note, I have completely rewritten the intro to my book. What started out as a self-help manual – how to fix tics – became more of a journey of enlightenment: If you can’t fix the tics, fix yourself.
I am hardly a seasoned Buddhist. I am a card-carrying control freak Christian who lives in L.A. and wants everything as perfect as the scripts I used to write. Fade in: Life is kooky and unpredictable, but by the end? Fade out: Happiness.
Like my dreams of a wild affair with George Clooney – no such luck.
I’m hoping you can read this intro and tell me what you think. Honestly. Are you disappointed it’s not a book on how to get rid of tics 100 percent? Because, really, that’s what I wanted to write. But it’s not what happened. But something marvelous happened along the way, and while I still struggle, I’m a better person because of it. I’m hoping my story can inspire others to live with uncertainty also.
Can you give me some feedback? I’d really appreciate it. The intro begins after the jump.
My son, Stink, was diagnosed with Tourette Syndrome when he was 4. Named for Georges Gilles de la Tourette in 1885, Tourettes consists of both vocal and physical tics that wax and wane in nature and last up to one year. Though my son’s symptoms were fairly mild, my reaction was nothing less than mind blowing despair. Thanks to media and fear inducing websites, I was utterly convinced my son would bark, hump busses and scream the F-Word during circle time.
Looking back, I can cluck-cluck like a mother hen and chortle about how dramatically I reacted. But I was freaked out. With only the worse case scenarios presented, how did I know that a Tourette diagnosis would not be a curse (no pun intended) but instead the biggest gift a mother could be given? That gift was none other than one giant invitation to live life on life’s terms, not my own. It was an opportunity to let go of preconceived notions of a trouble-free childhood. Like bottle of soda, it was my chance to shake up a routinely packaged life and watch with wonder as new challenges exploded over my ideas, drowning my soul with the mess and stick of fear, anger, joy and excitement. I could finally relinquish fast held ideals about what I wanted for my son’s life, and instead nurture the life that he was supposed to live.
In the subconscious recesses of my mind, I knew that Tourette was a present, but that didn’t keep me from spending the next five years looking for the gift receipt. “Thank you, but no thank you,” was my reply. “I appreciate the thought, but I’d like to return this for something else. Perhaps a good case of musical genius, a pitchers arm, or the ability to burp the Ave Maria.”
No such luck. Tourette was here to stay. I didn’t have to like it, but I could learn to accept it. Taking a clue from the Serenity Prayer, I vowed to accept the tics I could not change, change the tics I could, and have the wisdom to know the difference. What choice did I have other than to stress out my marriage, drink away my sorrows, or curl up in a fetal position in the geranium bushes out front? With two out of three being checked off that list, it soon became apparent that my son’s disorder would remain regardless of my response to it.
Taking a clue from my son, whose reaction to his twitches were nothing shy of unadulterated acceptance (“I love my tics! They are part of me!”) it was clear that I would have to love them also. After all, if they didn’t bother my son, and they didn’t bother his friends, and they didn’t bother his sister, his father, his teachers, his grandparents, cousins and even that random group of Girl Scouts who heard him cough his way through the The Tooth Fairymovie, why should they bother me? Oh, that’s right. I was narcissist.
I could talk a big game about nurturing my child’s individuality, but truth be told, it was all about my own fragile ego. When my golden haired wonder boy would create marvelous stories or put together complicated puzzles in ten minutes or less, clearly it was due to my emotional and intellectual nurturing. By the same token, every minor gulp, throat clear and tongue click were magnified asLOUD! RICOCHETING! EXPLOSIONS! They boomed like ringing fog horns in my ears, taunting me that “My child’s life is O-V-E-R. AND IT’S ALL YOUR FAULT.”
Tourette might have been my son’s diagnosis, but co-dependence was clearly mine. My son’s symptoms, which were ever changing and often unpredictable, served as my emotional pendulum, which didn’t exactly create a peaceful living environment. “No shoulder shrugs or tongue clicks this week? Woo hoo! Let’s go to the library and join the book club and hear a talk about emperor and gentoo penguins!” … “Oh, crap. Head nods and humming? Let’s go to the library anyway because no TS is going to keep my kid from living a normal life but so help me if he gets one stare from some elitist botox mom whose kid is named after a French painter and has hair down to his designer jeans I will kick her to the North Pole so fast it will make a polar bear’s nuts freeze off.”
In retrospect, my reaction seemed extreme. But at the time, I was in pain. I was in shock over a syndrome I never saw coming. I was in grief over saying goodbye to the childhood I thought my son would have. And I was in denial about my ability to fix those tics. Tourettemight not have a cure, but that didn’t stop me from spending hours on the internet researching natural cures and remedies. And while a steady diet of magnesium and Epsom salt baths, coupled with a healthy diet, helped – it did not eradicate tics altogether. For an A – personality type like myself, nothing short of complete symptom elimination would do.
Awesome! You’ve captured the picture of my life with my son. TS really doesn’t define any of these kids…unless you let it. It’s easier said than done, but it is definitely the truth. You’re book looks like it will not only be a great read….but a great help. Thanks for sharing – Kevin
Wow! Thank you for sharing this. I can’t wait to read more!
@ Susan – Thanks. It gives me encouragement to keep on going. It’s been an emotional process for sure. I wanted to have all the answers for folks. The enlightenment for me was that we can do our best, but there isn’t an answer completely, and that’s okay. Lots of love to you! Email if you need a boost! Andrea.Paventi@Gmail.com
Looking forward to reading more. I think you speak for lots of parents!
Totally awesome. I can’t wait for more. Felt a lot of the same things when my daughter was dx.