At long last, here is Chapter 1 of my book “Happily Ticked Off” 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 hear from you, too!
Chapter 1 — UnrealisTIC
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 20 years. Those freckle faced school girls of my memories had morphed into botoxed 30-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, there’s 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.
- Choose an educational environment that is best for your child, not for you!
- Stay open minded to what your child’s teacher has to say. Often times it takes someone objective to point things out we don’t see.
- Consider finding another mom who has traveled down the same path as you. If you can’t find one when it comes to tics, find one that has dealt with a syndrome on the spectrum. While your child might not have autism, per say, there’s a decent chance that mother has had a similar emotional journey to you.
- If at first you are distraught over tics and need to take a break, take a break! Hand your child off to your spouse. No spouse around? Find a neighbor. Find a relative. Consider tics an opportunity to break out of your comfort zone and create some community for yourself.
- It’s okay to have sad feelings. Cry – let it out! The quicker you do that, the quicker you can concentrate on your task at hand – a plan for your child.
- Don’t watch TV show or anything about Tourettes that puts you in fear mode.
- Know that you are not alone – you are going to be OK!
Chapter 2 to come soon!