Um, Stink is 12 now. I mean, really, how is this possible? He’s gone from a short haired, Scooby Doo obsessed six year old to a shaggy haired, book reading, computer playing, comic writing tween. I mean, that’s insane.
Didn’t I just write this article when he was first diagnosed at 6?
It’s been a long time since I’ve dealt with T.S.. I have my days of hand wringing over sounds and movements, but it’s a heck of a lot better than it used to be. Part of that is a healthy dose of acceptance on my part. But a lot of that is just that I love my kid for who he is becoming. I am letting go of fear, day by day, and working on my own spirit. If Stink can be comfortable with the sound of his voice, than why can’t I be comfortable with mine? It’s time.
I wish, knowing what I know now, that someone had written to me at the early stages of this journey. It would have helped to know that my son would be okay. That I’d be okay, too.
If you’re new to this journey, I can promise you that it’s all going to be alright.
I’m not sure what your plans are for 2015, but mine is discipline. It’s time to carve out time – every day – to do things that matter. When I do that, I am a happier Andrea. Then I’m happier mom. I am a better friend. A better wife. And a better daughter.
Each morning I begin with a small prayer from a devotional.
At 5:30 am.
Yup, I need Jesus if I’m up at that hour. But you know what? When it’s me and a cup of coffee, I can either think good thoughts that renew my mind and hit the gym, or crazy, spinning, “Oh, God, what’s going to happen?” thoughts that just feel toxic.
I don’t have big expectations for myself at the gym. 100 calories on the treadmill and I’m good. It’s not about getting in amazing shape physically. It’s about putting myself on the machine – one foot in front of the other. I matter.
As moms of kids with special needs, it’s easy to forget who we are in the process of life. We’re always trying to fix things – make things more comfortable for everyone. But as a friend, Adelia, once pointed out to me, “All boys at 12 have special needs.” Ain’t that the truth. Last I checked, tics or not, no tween boy was ever normal. And most I know are as obsessed with video games as Stink.
For me, it’s time to be obsessed with getting back to what I love most: writing. Three days a week I’m going to blog again. (Hold me to it!)
Along those lines, I’ve got this book just sitting in my hard drive. Truthfully, it’s been rejected by 3 big agents. They loved the query, but said it was too niche. I kind of just, well, stopped sending it out. But really, that’s dumb. It just takes one agent to say yes. And I can always self-publish. The main thing is to go with my heart and hopefully affect someone in a positive way.
Here are is the dedication and Chapter 1 for you to read if you’re interested. I hope to share more with you on this book’s progress, my writing progress, and my kid’s crazy life in 2015.
As always, I’d love to her from you, too!
The Book – Happily Ticked Off
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 view points 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 book 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
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 TS. He’s now 11. He’s well- adjusted, funny and loaded with friends. With the right plan and perspective your child can have a similar outcome.
Freak out time
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 Tourettes.
Boring Clinical Definition of Tourettes
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. 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/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 that life isn’t perfect and that this condition could be a hell 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 that Tourettes was 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,” 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.”
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 that 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’l l 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 rare. The thought, however, is understandably upsetting and. 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 Tourettes for over seven 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 hell bent on getting a prescription for Clonodine or Tenex quicker than you can say Giles De la Tourettes. You want a quick fix and medication is your answer.
That is a very personal choice and I support you on that journey. I am considering this possibility for my own son, especially as he enters 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 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. (Chapter B)
“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 fog horn 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 TS, but with some experience under my belt, I have better days than worse days. I might make my kid eat brocalli 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 TS 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 “Duck” and ends with “You.”
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 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 will simply 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. Stop being such a narcissist. (Note: It takes one to know one. I am constantly working on that trait, too!)
No Room for Fear
But I’m terrified he will be ostracized by his peers! What if he be 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 ear plugs 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 house plants 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 that 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 Tourettes. 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:
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 Tourettes.
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 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 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 re-upholster the 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 a 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 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 in tact.
Buckle your seatbelt. It’s time to Happily Tick Off.
|Your dreams are not your kid’s dreams. Listen to well meaning educators, even if it’s scary, and trust your instincts. Oh, and get some real friends – the ones that will listen to you cry, make you laugh, and call you on your crap. Trust me on that last part.|
I am not the first parent in the world to feel insecure about parenting, nor will I be the last. Special needs or not, giving birth is one big lottery ticket. You are literally making a bargain with the universe that you will do everything in your power to keep your kid safe, to make him strong, to give him values and a sense of self, but at any time he could come down with some devastating illness or get hit by a taco truck. And just like that, all those years of telling him to pick up his socks or shut the fridge to save five cents would be wasted. And you’d never be able to eat Mexican food again.
The above statement sounds so fatalistic. Most people prefer not to even think about it, and who can blame them? It’s scary. It’s unnerving. And it’s exactly these terrifying fears that drive today’s marketing.
Rich ad execs everywhere are mortgaging their mansions based on Just In Case advertising: Bank that cord blood just in case your kid comes down with some terminal illness.… Spend the extra hundred and fifty dollars on the Britax car seat just in case you’re hit by an out of control taco truck… Buy the brand name diaper cream just in case your baby’s butt breaks out in hives and ruins your Disney Cruise. For that matter, book that Disney Cruise whether or not you can afford it just in case your kid grows up to hate you. You can show him, and the grandkids, those pictures of the four of you in Mickey hats coughing up a lung with laughter on the lido deck. Now how could you be a bad parent with proof like that?
Like most people, I wanted the best for my toddler. While I prided myself in not falling prey to every Mommy and Me Groupon that promised to make my son smarter than Einstein, I was also on a pretty strict budget. I couldn’t afford a four hundred dollar car seat or a fancy vacation even if I wanted one. But I did want the best for his education.
As the product of Catholic school myself, I was sure my son would enjoy the same benefits of a private Christian environment – and it was never too early to start. Nicky was three – a year away from his Tourettes diagnosis. As far as I was concerned, his educational career would be nothing but smooth sailing, so why not start him off right?
Against my husband’s wishes on the matter, who figured the local community college co-op would be just fine for our active and friendly tyke, I signed Nicky up for an elite preschool ten miles away. Distance was no barrier to my son’s learning. He deserved the best. And that “best” just happened to reside on a campus adjacent to the very grammar school I had attended.
The day I turned in his registration – an intense intake form that was more detailed than his hospital exit papers – I ran into women I hadn’t seen in twenty years. Those freckle faced school girls of my memories had morphed into botoxed thirty something women. Ugg boots replaced saddle shoes. Flat ironed hair replaced ponytails and braids. The only thing familiar was the uneasy pit in my stomach.
“I don’t belong here,” I thought to myself. “Why am I traveling so far just to send my kid to preschool?”
“Andrea Frazer??!” I looked across the room to find a lithe tanned woman waving at me.
“Jenny LaGuardia?” I responded. There was no mistaking that lilt in her voice or that flashing smile. She came over and gave me a big hug. “It’s Jenny McQuillan now. Mother of three…almost four.” She placed her hands over her burgeoning stomach in an “Oops we did it again” smirk.
“A knocked-up Barbie” crossed my brain, but out of my lips came, “You look beautiful!”
She looked me up and down, eyeballs popping, “You’re still so tall!”
I thought to respond, “No shit, Captain Obvious,” but instead went with, “Thank you!””My answer really made no sense. Nor did this discomfort over a woman I hadn’t talked to in two decades. But there it was, insecurity hanging like incense from a May Procession.
This time, instead of fainting from the fumes at the altar, I fumbled a classy exit retort, “Well, I better go retrieve my son. That’s him over there, humping the Sparklett’s water bottle.”
A different woman than me might have torn up those registration papers, grabbed her son, and made a beeline for the closest exit, but not me. I had a dream – one that included my son playing side-by-side with the offspring of people I played side-by-side with. The fact that, as a child, I didn’t play side by side with these folks so much as sit on the sidelines and watch them have a grandiose time didn’t faze me. I was older now and so were they. New bonds would form. New memories would blossom. We were older, more spiritually mature, guided by Montessori and Jesus and God dammit it was all going to work.
On my way out I glanced at the fresh white walls. Above the lobby couch hung photographs of the happy shiny children of the Vatican. Black hands intertwined with white hands. Asian eyes danced among Irish and Italian. Various colors served as frames around the children, but no worries: the photos hung in perfect symmetry, left to right, up and down. If I had a ruler, I was positive that the space between each photo, at every angle, would measure the exact same number of inches.
And what a relief, really. Isn’t such balanced symmetry what the high tuition was for? There could be silliness and laughter and outright joy, but for heaven’s sake, let’s keep it orderly, shall we?
I wasn’t smug enough to believe I could control my son’s future as precisely as a puppeteer controls a marionette, but I felt an immense amount of pride at the seeds I was planting for his future.
Like many mothers with hopes and dreams for her child, I had mine. I pictured him progressing seamlessly from one milestone to the next: first day of kindergarten with skinned knees under crisp uniform shorts.… second grade First Communion in a black suit with a toothless grin… third and fourth grade chorus (or maybe even a lead…HOW EXCITING!) in the school plays.
My fantasies never included my lanky son wearing a basketball uniform or kicking his way into soccer stardom, but that’s because neither my husband nor myself are athletes. The closest this kid was going to get to a good arm was angling the Wii remote at just the right angle or perhaps pushing an overstuffed Costco cart through a crowded warehouse.
Regardless of what Nicky excelled in extracurricular wise, I knew for certain that one prime attribute would punctuate his academic career, and that fine little character trait was nothing other than good old fashioned order. For a while, my little fantasy was indulged. Nicky had friends. Nicky had play dates. Nicky had party invites. But, as the old adage goes, all good things but come to an end. I just didn’t expect that ending to begin when he was only four.
It seemed like just another sunny day in beautiful Los Angeles. I was in my son’s classroom, gathering up his things for an after school park day, when his preschool teacher stopped me.
“Mrs. Frazer,” she said, “I need to talk to you about something I’ve been observing in Nicky the past few weeks.”
I was expecting her to say something like, “Nicky’s really getting his letters down” or maybe something a bit less complimentary like, “Nicky needs to work on sharing a bit more.” Instead, I heard the words, “I’ve noticed Nicky stimming on the carpet.”
“He’s doing what?” I asked, now alarmed. From the tone of her voice, she was far from being critical, but she was clearly concerned. For someone with a dream co-dependently tied to my son’s success, “concern” from her translated into “blood-draining-from-my-face toxic fear” for me.
As I waited for her response, I attempted to look normal. Since that meant not hyperventilating and passing out against the lego station, I sucked in my breath and forced myself to look her in the eye.
“By stimming I just meant that he’s been rocking back and forth on the carpet during circle time the past few weeks,” she replied.
“Oh,” I responded, attempting to not overreact, “And… that’s distracting for the other kids?”
“Not at all!” she smiled. “It’s just that, well, he’s never done that before… which is why I didn’t say anything at first, but… since it’s been a bit of a pattern, I thought you’d want to know.”
“Well of course I want to know,” I said, “But, um, for lack of sounding obtuse, why do you want me to know?”
“I suppose because it could indicate something else is going on. And really, I’m not trying to say there is anything going on, but sometimes kids who self-soothe are doing it because they are anxious or stressed because there is indeed something else going on. Again, I don’t know but I thought you would want to know.”
As much as I was enjoying this round-and-round, I decided to save it for ring around the rosy later that evening with his younger sister. For the time being, I had about all I could take, bid a hasty thanks and went to the park as planned.
Okay, who am I kidding? I got into the car, called my mother, called my husband, called my best friend and made a bee-line for home where I hastily looked up every possible reason for stimming that could possibly exist. The results were not encouraging. In a nutshell:
Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.
A good friend of mine was wise, and kind enough, to remind me not to jump to any conclusions. If I hadn’t seen this behavior in my son at home, why should I freak out over one observation from a preschool teacher? Maybe he had gas, or was just a little nervous? Maybe he was jittery?
As it turned out, Nicky stopped rocking back and forth on the carpet soon after that first meeting. Instead, however, he replaced it with other odd behaviors. For a while, he would clear his throat a few times a minute. If it hadn’t been for the teacher’s first observation, I might not have noticed it at all. But now, I was watching him like a hawk and it was hard to ignore. I chalked it up to allergies, because eventually his throat clearings would disappear. I prayed that the decongestant I gave him was the answer and was grateful for the respite.
But it didn’t last long.
After a month of relative quiet, he began darting his eyes back and forth. After administering Benedryl, they went away within a week. Yes, it must be seasonal allergies! What a relief!
But then… the head bobs came in. Whenever he was lost in concentration – on a Scooby Doo cartoon, or simply grabbing paper from a printer – jerk jerk jerk would go his little head. Grasping at straws, I gave him some Benedryl, but this time, the nods didn’t go away.
One night, sitting around the table, he began playing with a cd player. Every time he’d press the button, the music would pour out, along with a head nod. When he’d press the stop button, his head would nod again.
“Nicky?” I asked him tentatively, “I noticed that you’re kind of jerking your head up and down a lot. I’m wondering, if you don’t mind telling me, why you do that?”
So engrossed, he didn’t even look up from his task at hand. “Oh, that’s easy, Mama,” he said. “You see, it’s kind of like someone has a remote control. But it’s not like Papa’s remote… it’s invisible! And he keeps pointing it at my head! I can’t help it!”
A few days later, as if in some conspiracy to bang me over the head with clarity, I happened to be flipping channels on the TV when Oprah came on. During this particular episode, a man by the name of Brad Cohen was being interviewed. He had just been honored with the prestigious “Teacher of the Year” award.
What made his story so compelling was not only the powerful effect he had on his students, but that he also had severe Tourette Syndrome. His vocal and physical tics were of epic proportion. He admitted that it wasn’t an easy road, but he was grateful for them because they taught him empathy and understanding for all people. It taught his students to focus on the human, not the outer shell.
Nodding my head, not unlike my child, I flipped off the TV. I knew two things without a shadow of a doubt then:
- My son had Tourette Syndrome.
- I was in trouble.
Chapter 2 to come on Wednesday.
3 thoughts on “Happy 12th Stinker! (Also Intro and Chapter One of My Book)”
So well written…keep shopping it around. My first book, pitched as a money book for girls, was rejected because Scholastic editors were convinced “girls don’t care about making money.” I kid you not. The criticism stung, but I took the advice and expanded the audience to kids in general. It eventually was published by a much smaller publisher.
Thanks, Adelia. I just gave your book to Stinker to read! I had forgotten you wrote that and came across it as I was cleaning up my room. So cool!
Yes, please do keep shopping it around! When I was diagnosed back in the late 90’s I collected every book I could find on TS. NONE of them read like this. NONE made me nod and laugh like this. Have you run it by any of the smaller specialty publishers? I don’t know if any of these are still viable, but Woodbine House, Let Live Publishing, and Hope Press are some of the ones that published books I’ve got on my shelf. Hope Press, in particular, caters to TS, ADHD, and OCD books.