The the next couple of months for writing Wednesdays I am posting a chapter of my book, Happily Ticked Off. If you like it what you see, you can buy one in the link below. If you just want to read it week after week for free, that works, too.
Why Post a Chapter a Week for Folk? (Um, that’s putting it up for free, Dumb Ass.)
My goal is to get people to think about their own writing projects as well as give some love to moms and dads out there who have struggled with this condition in their households. (Though it was dedicated to the mamas.)
This book was not about fixing Tourette Syndrome. It was about helping people have a transition in their thinking: To know that while they might not be able to change a disorder they most certainly can use it as an opportunity to transform themselves.
For those that just want quick fixes, I say go for it. There’s a ton of resources out there to promise you the moon on that. But here’s the real truth: if you don’t come to terms first with your perspective on the diagnosis… on any diagnosis… you might end up like me: frustrated and discontent when the next weed comes along to ruin your perfect garden.
Life doesn’t always happen to us as we expect. But it’s what we do with our
challenges growth opportunities that can make us bitter or make us better. While I’m still unsure sometimes of my path (just ask my bff Tuskany or Amelia) I know that when I remember I don’t know the answers, but God does, I stop struggling and just live in… what’s that word? Oh, yeah. Peace.
And so, with no further adieu, here you go! Let me know what you think and let me know about your projects, too!
This is for you, Mamas.
When my son was diagnosed with Tourette Syndrome seven years ago, I encountered loads of disheartening information on the internet about tics, ADHD, OCD and disturbed children with behavior problems.
I found blogs full of victimhood stories and medications gone wrong.
I found a few helpful but ultimately dry informational books written from medical and nutritional viewpoints on how to suppress tics through natural or pharmaceutical means.
What I didn’t encounter, however, was a book on humor, support and most importantly, hope.
So I wrote one.
This book is not just for mamas dealing with Tourette Syndrome. It’s a love letter for all you moms dealing with an unexpected diagnosis. It’s the book I wish someone had written for me when I was hopeless, angry, and feeling so very alone.
It’s my sincere hope that this mom-moir will serve as one giant hug for your fears. May it whisper into your heart, “You did not cause this disorder. You are strong enough to handle it. Your child is perfect despite some medical challenges. You are not alone. I am here. YOU CAN DO THIS.”
For all you mamas out there who are hanging by a thread, I’m asking you to tie a knot and hang on. Happily Ticked Off was written for you.
Happily TIC–ked Off
“Your son has Tourette Syndrome.”
I looked up at a stern woman in her late 30’s. She had her arms folded tightly against her heart. (If she had a heart. The verdict was still out.) Black and silver hair spilled down her white lab coat, covering up her name tag. “Dr. Badbedside Manners.”
Combined with her pale skin and silver jewelry, she looked like a cross between Stevie Nicks and the Bride of Frankenstein. The diagnosis she just handed me didn’t make me less terrified of her.
Stop being a wussy, I told myself.
I glanced at the diploma on her wall and collected my thoughts. I had to admit, only a delusional freak would be surprised by her words. After all, my four-year-old had been referred to her only after I had already depleted every cent of my family’s HMO deductible on allergy testing, vision tests and more pediatric visits than my son had Scooby Doo band-aids. I was hoping all these visits would provide an answer to why my kid would transition from clearing his throat several times per minute to rolling his eyes side to side in rapid succession.
How I loved the pattern of those eyes on my retro kitty tic-toc clock! The predictable back and forth motion never ceased to instill a profound sense of joy and fun as I sipped my morning coffee and stared at them. Seeing them on my child? Not so much fun. Far from viewing it as kooky and eccentric, those eye rolls inspired nothing less than primal fear.
Which… I’m ashamed to say… I took out on the kit-kat clock earlier that morning.
Only a bad mother would take out her irritation on a preschooler. But that cat? She was fair game.
First she lost her tail. Then she was shattered to bits in a moment of pure frustration when my son morphed from eye rolls into unexpected gulps. Those tics, and that cat, had to go.
I tried to squelch the tears brimming behind my eyes. I wish my husband were here to hold my murderous little hand.
He was not. And that stunk.
Perhaps it was because I was alone on that ill-fated day that the revelation hit me so hard. Perhaps if Rex had been there to steady me . . . to wrap me in those strong, lithe arms of his . . . the blow would have felt less intense.
Lucky for me, I recovered quickly. I was the queen of composure.
“Tourette’s? You mean… But how…Wah wah HUH?”
Dr. Badbedside Manners didn’t twitch, and not just because she didn’t have Tourette Syndrome. Likely she was used to moms like me. Moms who, despite hope against hope … despite seeing the signs themselves for months on end …were banking on a different outcome.
I’d hoped to hear he had a vitamin deficiency. Instead, I was handed a nightmare. With nothing more than a few words about this little known syndrome, I was told to come back in six months.
When I called my husband on the car ride home, I had only one statement: “Nicky has Tourette Syndrome.”
My husband had only one answer. “What happened to the kitchen clock?”
I hung up the phone and sobbed like a baby.
And that, my friends, was the beginning of a hellish six years.
Determined that no mama should go through what I did, I wrote a book.
This is the story I wish someone had written for me. My hopes are that it saves not only people’s sanities, and their marriages, but also perfectly innocent kit-cat clocks. No time-piece, no matter how annoying, deserves that kind of brutality.
This is my journey.
This is my story.
If you’re up upset at your child’s diagnosis, whether it be T.S., Autism or some other spectrum disorder, I want you to know I’ve been there.
I’ll have you Happily Ticked Off in no time. How about we start with a few facts I wish someone had sent to me during the first lonely, dark leg of this journey.
FACTS and HOPE
Tics or a T.S. Diagnosis
If you’ve picked up this book there’s a decent chance your child has recently begun to tic or has just been diagnosed with Tourette Syndrome. You’re pretty ticked off.
My son was diagnosed at 4 years with T.S.. He’s now 12. He’s well-adjusted, funny and loaded with friends. With the right plan and perspective your child can have a similar outcome.
You want to believe me, but you’re still panicked. Second only to dismay over this new diagnosis is the regret that you didn’t invest stock in the Kleenex Corporation. You can’t stop crying.
Neither could I. I’d sob to myself, my friends, my family – even bewildered gas station cashiers who simply wanted to sell me a Diet Coke – not hear a dissertation on the boring clinical definition of Tourette’s.
Boring Clinical Definition of Tourette’s
Named for Georges Gilles de la Tourette in 1885, Tourette’s consists of both vocal and physical tics that wax and wane in nature and last up to one year. I’ll get into more detail later, but for now, let’s move on to something you can really relate to… like whining!
“What happened to my perfect little boy?” was my broken record, twenty four hours a day. No one had an answer, but I have one for you: nothing has happened to your child. Your child is still perfect. Just hang tight. I survived this initial scary period and you will, too. I promise.
It’s Not Fair
You know life isn’t perfect and this condition could be a heck of a lot worse, but you’re still upset. You can’t see the big picture when you’re living the unsettling, fearful present.
In the subconscious recesses of my mind, I knew Tourette’s would one day be viewed as a present, but that didn’t keep me from spending the next seven years looking for the gift receipt. “Thank you, but no thank you. I appreciate the thought, but I’d like to return this for something else. Perhaps a good case of musical genius, a pitcher’s arm, or the ability to burp the Ave Maria.”
Maybe you have no official label yet, but something is wrong and you’re freaking out. What you used to see as your child’s occasional quirky habits has morphed into unrelenting blinks, eye rolls, jerky head nods and spastic facial grimaces.
It’s hard to watch your child go through this, but stay strong. Tics are like visiting in-laws who invade over Thanksgiving – they’re annoying, can drive you to drink, and just when you get used to them they take off as quickly as they arrived.
The Nature of Tics
Like the departure of your extended family, you feel immense relief that the tics are gone. But Christmas is just around the corner. You have a deep sense of foreboding that those tics – and those in-laws – will be back. What if this time they bring friends?
It’s true that after a quiet period, tics often return. Sometimes kids exhibit the same tic as before and add a different one. Sometimes one tic goes completely away only to be replaced by a new one altogether. Like your Aunt Sally, tics are eccentric and always changing. At least they don’t wear housecoats and smell like old musk.
The Evil of the Internet
You are a normally well-balanced person, but you begin to worry something more serious is at the root. After searching like a mad woman on the internet, you’re bombarded with hundreds of frightening outcomes for your child.
Seriously, this isn’t helpful. Turn off the computer. (Okay, fine. Don’t listen to me. Keep researching deep into the night like a crazed lunatic. I did the same. But let me reiterate THIS ISN’T HELPFUL.)
You begin to slide down the rabbit hole. In that dark pit, you become dizzy and disoriented. You lose perspective. You go to dismal places like brain cancer.
It’s not brain cancer. Your overworked mama brain, however, is spinning like a jacked up tilt-o-whirl on truck stop java. Stop the ride! Minus some extra dopamine, your child’s brain is perfectly healthy.
In most cases – as will be the journey relayed in this book – T.S. and tics remain mild to moderate until adulthood. Then like your wonky Uncle Donny and Cousin Frankie, they disappear altogether. (Pssst…it’s such a relief no one goes looking for them!)
Focusing on positive outcomes can really keep your negative thinking in check. If you can’t instantly change the tics, change your thinking.
Severe Cases & Seeking Medical Attention
In extreme scenarios (which you’ll get plenty of if you don’t listen to me and scour the internet into all hours of the night) you’ll find cases of children screeching, spitting, jerking and having to be hospitalized. This is rare. The thought, however, is understandably upsetting. As with mild tics, it’s always advisable to seek medical attention.
Start with your primary care physician who can then refer you to a neurologist if needed. Don’t be surprised if, after seeing your pediatrician, they seem very unconcerned. Your “emergency tic OH MY GOD IT COULD BE SEIZURES” situation is very commonplace to doctors. It can take months to see a neurologist. I say this not to frustrate you but to assure you that your child isn’t the first one to ever experience this.
Identifying the Triggers (as well as the ever-important legal term known as “Butt Coverage”).
I am not a doctor. I am not a certified nutritionist. I am not a psychologist. I am, however, a mother who has been dealing with Tourette’s for over eight years. This book will share what has eased my son’s symptoms, what has exasperated them, what has eased my symptoms of panic, and what has exasperated them.
Even if your child is dealing with an acute onslaught of tics, the present doesn’t need to indicate the future. Many mothers, with time and patience, have pinpointed triggers for their children’s symptoms. Once these triggers were eliminated, they were able to drastically reduce the tics.
Medication vs. Supplements
You are not a patient person. You want to stop the tics this instant and are bent on getting a prescription for Clonodine or Tenex quicker than you can say Giles De la Tourette. You want a quick fix, and medication is your answer.
That is a very personal choice and I support you on that journey. I have considered this possibility for my own son, especially now that he’s in those tumultuous ‘tween years. I’ll keep you updated on this at my blog, http://www.HappilyTickedOff.com.
Many of you will opt for a more natural route to easing tics, but you worry about your child’s self-esteem while you work out a game plan. You don’t want him teased. Your heart breaks that some nasty kid will poke fun at his arm-thrusting tic.
I understand your concern. I was crushed at the prospect of some bully tormenting my baby. But I set my emotions aside and focused on a more important reality: Cruel kids are going to tease other children whether or not those children have tics. My son’s heart, character and personality would define him, not his tics.
“That’s easier said than done,” you might wail.
To that I will respond with a resounding, “Duh.” But with practice, you’ll learn to focus on your child’s strengths, not his tics.
Mild Tics/Mild Annoyance
If your child has mild tics, there’s a good chance he doesn’t notice them or isn’t bothered by them.
This last statement is hard to believe, but it’s true. Your kid might be happily watching Spongebob, coughing like a bronchitis-stricken seal six times a minute, and his only complaint at the end of the show will be, “Mommy, I could really go for a bologna and cheese sandwich.”
Your Child’s Life Is Not Over
To highly tuned-in mamas like yourselves, your children’s inability to be affected by tics is baffling, because every minor gulp, throat clear and tongue click will be magnified into LOUD! RICOCHETING! EXPLOSIONS! They will boom like a foghorn in your ringing ears, taunting you that your child’s life is O-V-E-R.
Your child’s life is far from over. Tics or T.S. is not a death sentence. The only thing that needs to die is your old vision of what you thought your child’s life would look like. He can experience as much success as a non-ticking child.
It’s Not Your Fault
I’d lie if I said I have 100% embraced T.S., but with some experience under my belt, I have better days than worse days. I might make my kid eat broccoli on purpose, but I didn’t give him T.S. on purpose. I don’t blame myself for his condition.
Whether your child has a unique case of T.S. or he had a genetic pre-disposition to it, stop feeling guilty about it. Focus instead on passing down other incredible gifts to your child, such as the ability to stay curious about life, the ability to love, the ability to experience endless joy and the ability to tell a killer joke. (Never underestimate that last talent. It far surpasses tics any day of the week.)
You Feel Like You Could Die
“I’m devastated,” you might moan. “Acceptance is about as likely to happen for me as winning the Lottery. And frankly, I’d trade in tics for a million dollar jackpot any day of the week.”
Unlike tics that often appear out of nowhere, transformation doesn’t happen overnight. You’ll need time to both accept this crazy syndrome as well as come up with a protocol that will lessen your child’s symptoms. You need to be patient.
“How can I be patient?” You’ll snap. “As if I didn’t already have the stress of bills, housecleaning, work and a husband who, for the record, seems eerily unshaken by these tics and has no idea why I’m freaking out, I now have to listen to lip smacking five times a minute for three hours straight?!?!”
To this I’ll respond, “Patience comes when you stop paying such close attention.”
And to that you will respond with something that sounds like “I hate you, you self-righteous –know-it- all- bad-bad-lying-liar-who-lies writer lady.”
Go ahead. I can take it. I can also handle your protests about how you’ve tried not to pay attention to your kid’s noises, but you can’t help yourself.
It Gets Better
“There he goes again!” you’ll complain, as you read this introduction and scan for tics with the obsession of a hound dog sniffing out convicts. (Congrats on the multi-tasking, btw.)
To all this I will heartily add that I have been there. I get it. It will get better.
No one Understands!
You very likely will roll your eyes, wondering for a brief moment if you yourself have tics but then realize you’re simply being catty to me which, again, I forgive you. You will then convince yourself that no one else could possibly understand your frustration and hopelessness.
But I do understand it. I have been locked in car rides through the desert where no amount of country music could drown out my son’s post swimming throat clears. For days afterwards, similar to Old Faithful, I couldn’t help watching and waiting for his well-timed and unremitting eruptions.
Other People Don’t Notice Tics Like You Do
“Old Faithful is an excellent analogy,” you agree, “because everyone is going to stare at him in public – clapping and jeering at this unique and boisterous spectacle.”
Unlike visiting a national monument, most people are not interested in the incredible national treasure that is your child. They simply will not notice the minor sounds and vocal movements. (Note: As a narcissist in transition, I am constantly working on that last piece of advice myself.)
No Room for Fear
But I’m terrified he will be ostracized by his peers! What if he barks after busses and curses the F-Word in circle time!”
Get that fear a muzzle, because like your bad high school boyfriend, it lies like a rug. (For the record, less than 10% of T.S. kids uncontrollably curse. So let’s keep this worry in check and take it one step at a time, okay?)
Moms’ Survival Tactics
You consider getting earplugs but figure good mothers would never avoid the sounds of their children. You berate yourself for finding excuses to fold laundry to avoid watching your daughter blink and jaw thrust over her chapter book.
One of the best mothers I know rearranged her houseplants so she wouldn’t have to see her daughter nod her head over and over at the breakfast table.
Many people would call foliage adjustment poor parenting.
I call it brilliant. It’s a perfectly acceptable survival mechanism.
By now you’re not sure if I’ve completely lost my mind, but a small part of your brain is telling you I might be making sense. You agree to try out a little patience, but aren’t sure how to start.
How about right now?
Take a deep breath.
Tell yourself that for just this moment everything is going to be fine.
All you have to do is be your child’s mother – in whatever state he or she is in.
Tell yourself that you don’t have all the answers, but you’re going to try your best to take it one step at a time.
Take another deep breath.
And now allow me to share a little story with you as you take your first jaunt down that long and windy road of patience. This inspirational tale is one I heard long before my Nicky was diagnosed with Tourette’s. On rough days for me – which at the beginning were every day – its encouraging message would soothe my brain like a good cabernet.
Side Note: Drinking
During the early days, a bad cabernet worked just as well. If you, too, find yourself drinking a bit more to calm down at the end of the day, you wouldn’t be the first frazzled mama to do so. But I encourage you to keep it in check. T.S. isn’t going away anytime soon. Does your ticking son really need to be flanked by a slurring mother hopped up on Two Buck Chuck? And really, it’s going to be hard enough to find time to cook healthier meals, schedule in more exercise, shop for supplements and fit in a meditation schedule. Combined with AA meetings, you’ll soon find yourself ticking, too. Careful, okay?
Now, back to our regular scheduled programming of inspirational story-telling.
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’s.
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 to 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. She borrowed a pair of scissors from a ticket agent and cut off the sleeves, which they used as headbands. She took the scissors to their pants, made makeshift 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 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, she knew them 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 re-upholster the taxi driver’s car, which earned the family some extra money, which they turned around and used for a 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 a pristine London hotel.
That mama, despite feeling like she would drown in despair, faked a good attitude until a true, authentic joy bubbled up from the pit of her soul. Despite not signing up for it, she made the best of the situation and had an adventure of a lifetime.
You will, too. Grab your T.S. passport. T.S. is an adventure. It might seem scary, but let this book be your road map.
Let me be your tour guide. Let my story serve to remind you that you’re not the first to take this scary trip. It’s going to be a bumpy ride, but I promise you’ll land safely with your child intact.
Buckle your seatbelt. It’s time to Happily Tick Off.
Until next time,
Leave a comment or write me at HappilyTickedOff@Gmail.com