NOTE: The is the second of three parts introducing AndreaF’s book about her life as a mother of a child with Tourette Syndrome. You can find the first part here.
Insanity is often described as hitting your head against the wall over and over and expecting different results each time. I would agree with that definition, but I didn’t see myself as crazy. I saw myself as head heels in love with my son who would do anything to alleviate his ails. And it’s hardly like I was hitting my head against the wall the same way every time. I used a helmets to soften the blows. I went about slamming against the wall with different intensities. From homeopathic visits, dietary changes, acupuncture, neurologists, online ordered vitamins, support groups, books, habit reversal training, psychologists and psychiatrists and ultimately medication, I did everything in my power to “normalize” my son.
For a few weeks, even months at a time, my efforts seemed to pay off. Sure, I had bad hair from exhaustion and wearing all those helmets, but sometimes those tics would dissipate. But just when I’d let my guard down, they’d come back. And then the insanity of head banging would begin again. It was exhausting, and those bumps hurt, but until I got rid of those tics, I’d simply have to live with the pain.
Peda Chodron, a world renown Buddhist teacher who practices awakefulness, fearlessness, and gentleness, speaks often about the futile attempts of changing others to make oneself feel better. In a lecture entitled “This Lousy World,” she reveals a list a mile long of things that annoy people to no end, including, but not limited to, the weather, the government and scent assaulting perfume. She then offers an analogy borrowed from another teacher: “It’s like being barefooted and walking across blazing hot sand or across cut glass or in a field with thorns and your feet are bare and you say, ‘Oh, this is really hurting. It’s terrible. It’s too sharp. It’s too painful. It’s too hot. Do I have a great idea! Everywhere I go, I am going to cover it with leather. And then it won’t hurt my feet anymore.’ That’s like saying, ‘I’m going to get rid of her and get rid of him and get the temperature right, and I’m going to ban perfume in the world and there will be nothing that bothers me anywhere. I am going to get rid of everything – including mosquitoes – that bothers me anywhere the world, and then I will be a happy, content person.’ ”
Chodron could have replaced “him” and “her” and “mosquitoes” with the word “tic” and describe me 100 percent. In the aftermath of a devastating and unexpected diagnosis, I was too emotional to do the logical thing. I wasn’t able to see past my anguish and simply wrap leather around my feet – instead of the desert – and walk pain free across a desert of uncertainty.
If only someone out there could have told me what I know now: That Tourette isn’t a death sentence. Not only would my son go on to defy any ridiculous stereotypes of what it means to have a tic disorder, but he would develop a soul far stronger and richer than I would have imagined. His ability to transcend his label was not due to thriving despite uncomfortable and dire circumstances, because my son never saw his disorder as tragic. Ticking was just a small facet of who he was. Instead of being Stink, the kid with Tourette Syndrome, my son quickly showed me, and the world, that he was silly Stink, the kid who cracked jokes and loved karate and told fabulous stories and read everything he could get his hands on and made babies laugh and adored his sister and held my hand even in the third grade and was fearless in tumbling class and thought each one of his three biological grandmas were the most awesome women on the planet and oh, in addition to these endearing characteristics, he had Tourette Syndrome.
As a woman who had lived her entire life judging herself on what she did, instead of who she was, it took a long time for Stink’s philosophy to sink in. I still struggle with it, but like Chodron’s desert analogy, I have learned to accept that I can’t change the tics, but I can change myself. This includes letting go of expectations of what I want, and becoming more comfortable with what is. And some days, when he’s ticking a bit more than I’m comfortable with, I still freak out. But instead of judging myself for my reaction, I am willing to look at myself with compassion. Like my son’s face, that occasionally decides to eye roll or nose scrunch, I’m not perfect. I am perfectly human. And that is enough.
One of my favorite all time stories about special needs is called “Welcome to Holland.” I took the liberty of adapting it for my experience with Tourette.
One day a family of five boarded a plane headed for London. It was winter, which meant their luggage was filled with sweaters, thick wooly socks, mittens and scarves. The mother, who had dreamed of this vacation ever since she had children ten years prior, had planned out the entire trip in painstaking detail. They would have tea near Buckingham Palace after shopping at Harrods. They would tour the Tate and take a family Christmas photo in front of Big Ben. They would catch a show in the West End and go to mass at St. Paul’s.
After two hours on the plane, she looked over at her three children who had magically fallen asleep in the seats between herself and her handsome husband. She grabbed her mate’s strong hand, smiling at how perfectly everything had fallen into place.
At one point the captain’s voice streamed over the P.A. system. “Ladies and Gentlemen, thank you for flying with us today. Due to some unexpected orders from the ground crew, this plane will no longer be flying to England. We will be changing directions entirely and landing in Africa. I can’t give you much information other than we cannot alter our course. You will have no choice but to make the best of the new arrangement. We’re not sure when we’ll be able to get you back home but you all seem like capable people who can wing it just fine. So, with that in mind, enjoy your new destination!”
Understandably, the mother was horrified at this news. Her husband remained cool and collected. She was both grateful, and horrified, that he wasn’t as freaked out as she was. How could he be so calm??! How could this enormous error happen? She wasn’t prepared for this abrupt switch of plans! This was not the way her dream vacation was supposed to go! The remainder of the flight was spent in abject misery as she ruminated, sulked, cried, moaned, hollered and generally cursed her fate.
By the time the plane landed, she was in quite a quandary. While this was one of the most unsettling experiences of her life, she also knew that falling apart would not help anyone. She’d have to be strong for the kids. She’d have lean on her husband when she could. But mostly, she’d have to lean on herself. She’d attempt to make the best of it. What choice did she have?
Once on the ground, the luggage never arrived. Everyone was sweltering in their woolen sweaters and itchy pants. What could she do? She borrowed a pair of scissors from a taxi driver and cut off the sleeves which they used as headbands. She turned their pants into shorts and hailed a taxi.
As this disheveled family of five crowded into a cab, the driver had a good laugh at their outfits. It turns out he spoke English and asked what happened. Against her normally private nature, she told him. He invited her family home to his home and she said yes. Clearly she needed help and couldn’t rely on herself anymore.
For the next two weeks, her family did not shop. They did not tour museums. They did not eat at restaurants.
They ate home cooked meals around a plain wooden table with the taxi driver’s wife, her sisters, their kids and 20 other people with names she could barely pronounce on Day 1 but by Day 20 knew as well as her own family’s names.
The kids ran around barefoot with children who didn’t speak their language but sure knew how to laugh.
Her husband helped reupholster taxi driver’s car which earned the family some extra money which they turned around and used for goodbye feast when the time came to finally fly back home.
With bellies full of food and hearts full of gratitude, they said their tearful goodbyes and boarded the plane. As they flew back, the mother couldn’t help but think that Africa was a far cry from England. It wasn’t as civilized. It wasn’t as comfortable. But it was exotic. It was different. And her family bonded more in that two-week unplanned adventure in an African village than they ever would have in pristine London hotel.
That mama, despite feeling like she was going to drown in despair, faked a good attitude until a true, authentic joy bubbled up from the pit of her soul. Despite signing up for it, she made the best of it and had an adventure of a lifetime.
You will, too. Grab your TS passport. TS is an adventure. It might seem scary, but let this book be your road map.
Let me be your tour guide.
It’s going to be a bumpy ride, but I promise you’ll land safely and have the time of your life.
Buckle your seatbelt. It’s time to Happily Tick Off.
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
I am thoroughly enjoying reading your posts. I can’t wait until this is a book.