By Rina Gibbons
“Mommy, I think Uncle Kal’s dogs don’t know who I am because I’m wearing a costume.”
I looked at my five-year-old like she had just recited the first 100 digits of pi. We were heading down the stairs of my brother’s Barrhaven McMansion, the last stop before heading home to the tiny townhouse we shared with my parents. Passing his pair of Audis, we got into my father’s Chevy Malibu. Only the letters alibu remained. The disparity of our circumstances didn’t bother me today. My child had put her feet in someone else’s shoes. Paws to be exact, but let’s not split fur. This was a moment I thought would never happen.
She has autism.
The Carbone Clinic provides behavior analytic services to children with autism. They define the “Theory of Mind” (TOM) as, “a specific cognitive ability to understand others as intentional agents, that is, to interpret their minds in terms of theoretical concepts of intentional states such as beliefs and desires.” Imagine you were to show a child a candy box that was filled instead with marbles. Then ask them: If someone else was given the closed box, what would that person think was inside? If TOM was developed, the child would say, “Candy.” A deficiency in TOM means they would say, “Marbles.” They cannot put themselves into the mind of another.
I thought my daughter’s answer would always be marbles.
I hate the word autism. It does not define her. She has chocolate almond-shaped eyes that download you with the intensity of a TSA agent. When she smiles, you find yourself at the end of a rainbow. A fortune has been paid to plastic surgeons to acquire the nose nature has bestowed her. Her laugh sounds like the tinkling of wind chimes, and her punch would rival Bruce Lee’s. That’s my daughter. But when she is sitting under the table at a restaurant, screeching incoherently, banging her shoe on the floor, and all eyes are on the unfit mother of the demon child, those words invariably escape. “She has autism.” The looks turn to pity, as I hand over my Get Out Of Jail Free card.
Discreetly I counted; three white, one black, two East Indian, one Asian, and one perhaps Middle Eastern. Most of us look like we are in our thirties, a couple older and one younger. There was another single mother, too. Unfortunately, she didn’t speak much English. My French is passable, but we never connected, though we did cry more than the others. Couples can take turns being strong; we didn’t have that luxury. Here, in a group of strangers, we could be weak. In the end though, almost everyone cried. We were, after all, parents of high-functioning autistic children.
Helpguide.org tells us, “Autism is a spectrum disorder. This means there is a wide degree of variation in the way it affects people…Every individual has problems to some degree with social skills, empathy, communication, and flexible behavior. But the level of disability and the combination of symptoms varies tremendously from person to person.”
Outwardly our children were different. Yet, when a parent was given a few minutes to describe their child, each one was beautiful, charming, funny, loving, and extremely intelligent. None of our children were judgmental, dishonest, cruel, or held a grudge. That’s what we had in common; sweet, gentle progeny who would no doubt become easy pickings on the playground because of their eccentric ways. They were quirky and awkward, with brains that process information not just outside, but nowhere near the box. I told my daughter one day, “Honey don’t touch the knife. It’s sharp, and it can hurt you.”
“Won’t it hurt the food then?” was her response.
Our support group session was held in the staff lunchroom. The facilitator handed each parent a page to read; it was the well-known parable for the parents of children with disabilities, Welcome to Holland. You have wanted to go to Italy your whole life; everyone tells you how amazing it is. You plan for it, book your hotel, and you are finally on your way. But when your plane lands, you are told you are in Holland. You don’t know a thing about Holland; you are confused and upset. So you find a guide book and eventually experience all the wonderful things about Holland. At first read it’s clever, and you may even smile. But autism is not Holland. No windmills gracefully turn in the breeze, and you aren’t wearing cute wooden shoes. There are meltdowns that last hours, later nights than other parents have because autistic children rarely sleep, and an endless list of appointments with doctors, therapists, special-needs workers, learning-support teachers, IEP meetings, ABA sessions, and so on. Holland won’t pull out a clump of your hair and head butt you in the stomach because you can’t get the wi-fi to connect.
“She’s a thinker; you can see how smart she is.”
“She’s a late bloomer, and she will catch up.”
“Einstein didn’t talk until he was four.”
“She will talk when she has something to say.”
I heard well-meaning statements from mothers at playgroup meant to alleviate the notion that something was not quite right. Justin was telling his mom which of the dinosaurs ate grass and Tony explained a game he invented where I had to jump over all the blue lines on the floor. Meanwhile, Indika at age two, was staring out the window or endlessly walking in circles around the play stations with her chosen toy of the day clenched tightly in her fist. Her therapists would later call it her “fidget toy.”
Our family doctor, whom I now despise, told me that children develop at different rates and not to compare them. Almost every appointment for two years, she ushered me out of her office with a similar sounding statement and a pat on the arm. With a veneered smile, she would already be looking past me to her next patient.
When actual sentences finally came out of my daughter’s mouth, relief settled me into blissful ignorance. It was while watching her favorite television show, The Backyardigans, when my bubble burst. I heard word-for-word, the same phrases she had been repeating for the past 10 months. The fact that they were in perfect context had delayed my realization. Through careful Googling, I came across the term echolalia, a common symptom of autism. The despised doctor dismissed me yet again when I brought it to her attention. “All children go through this stage. Don’t worry, it’s perfectly normal.”
On a trip to the Children’s Hospital of Eastern Ontario (CHEO) to treat my daughter’s dehydration (she couldn’t eat or drink after major dental surgery), we met the doctor who would change our future. She didn’t have the pat-you-on-the-hand, everything-will-be-alright bedside manner. She was six feet tall and no-nonsense direct, and she knew what she saw. In fewer than 10 minutes with my daughter, she had sent us on our way with a referral to a developmental pediatrician and an appointment with a community-based organization called First Words.
Somehow I ended up in the car. I remember the rage that made every nerve ending in my body white hot. For two years I had been ignored and dismissed. I wanted to throttle our physician. I was also angry with myself. Why did I listen to the other parents? Why didn’t I go to another doctor? Why wasn’t I doing more research?
First Words was first-come first-served and opened at 9 a.m. By 8, the waiting room was already overcrowded with toddlers and their furrowed-brow parents. My Indika was four and clearly the oldest. Within minutes of my daughter’s interview, I was told that there was no point in continuing. We would be contacted by the Ottawa Children’s Treatment Centre (OCTC).
In the interim, we had our appointment with the specialist on child development. He spent two hours with us and concluded that my daughter could not be autistic. This was primarily based on the fact that she was able to put a piece of trash into the garbage can without any of us prompting her. I was relieved, but it was short-lived.
My daughter’s hands were flapping in the air like a fairy about to take flight. The OCTC doctor scratched something on her notepad and the psychologist began nodding, as if agreeing with what she had written, though she was sitting across the room. “How many times a day does she do this?” she asked me, and I didn’t want to answer, because I already knew what it meant. The rest of the interview followed the same trajectory. I reluctantly answered the questions that brought us one step closer to her diagnosis.
I had officially entered the realm of autism. A piece of paper signed by the doctor confirmed that she was the one in 68. The Centres for Disease Control and Prevention (CDC) estimated in May, 2014, that one in 68 children have Autism Spectrum Disorder. In 2003, it was one in 166.
What the hell is going on with our children?
There are theories. A study in Denmark, which is renowned for its excellent medical record systems, proposes that it is the expansion of the diagnostic criteria which has widened the definition of autism. The numbers haven’t increased, but how we diagnose the condition has. Dr. Evdokia Anagnostou suggests that access to systems and institutions that diagnose and evaluate autism has increased. One in 61 children in southeastern Ontario compared to one in 100 in Manitoba shows a large geographic variability. Then there are those who attribute genetics, mercury from vaccines, GMOs, pesticides, and other environmental factors. The truth is, no one knows and everything seems to be fair game.
I began Internet searches the moment my daughter’s eyes closed each night; they ended when I would rest the red-rimmed slits of mine for just a second. I wiped dried drool off my iPad every morning. Within a month, I had to change our data plan to unlimited. It was my fault; I blamed myself for everything that went wrong during my pregnancy. I hadn’t eaten enough because of all-day morning sickness. She hadn’t received enough iron and omegas. Stress during pregnancy from the emotional and physical abuse I endured from her father culminated at 36 weeks, when he kicked me in the stomach. I was induced and received an excess amount of the drug Pitocin. For months, my life spun in circles around the question that could never be answered: why? After months of self-blame, I met mothers who had perfect pregnancies, supportive husbands, balanced diets, and conventional deliveries. Their children were also autistic. So I let it go. Finally I slept a whole night, without nightmares.
Having a child with autism is a loss I felt ashamed to admit, especially with weekly trips to CHEO where cancer-stricken children are on deathbeds, and others need organ transplants. Although I could empathize with those parents’ pain, it didn’t take away from my own. The guilt that resulted was overwhelming. Most parents want the world for their children. We envision a future with giggling best-friend sleepovers, high school and university graduations, successful careers, happy marriages and healthy, beautiful grandchildren. Would my child ever experience those things? Would she be tied to me for her entire life because she could not conform to the neurotypical world? (Parents of autistic children use that word instead of normal, but that’s what we mean.) Will she ever relate to her peers? Would her language abilities catch up to the rest?
She starting reading words when she was 18 months old. According to autism.org.uk, “Hyperlexia is characterised by an intense fascination with letters or numbers or, in younger people, an ability to read far beyond their age. People with hyperlexia may, nevertheless, have difficulty understanding verbal language and interacting and socializing with others.”
Two and a half years later, she was reading at a fourth-grade level and doing second-grade math equations, but not uttering a spontaneous sentence.
At the time, I would have given all my limbs to have a neurotypical child, one who didn’t shout out the word “Muffin!” a hundred times a day and collapse into a fit of hysterics each time. Developing the patience of saints and spiritual leaders was beyond my skill set. I didn’t want to spend my weekends filling out endless forms and paperwork, begging charities for grants, and hounding the government for services. I was not an advocate. I just wanted to be a regular mother. Parenting alone was hard enough; I had no shoulder to cry on. Why couldn’t autism only happen to wealthy, well-adjusted parental units with the funds to afford costly therapies and the support structure to withstand the brutality of autism? There were days that I couldn’t leave my bed. Mornings that I spent curled in a fetal position on the basement floor, avoiding the shrieking child one floor above. Living with my parents was the only way we got through those days.
I know exactly when it happened. It was during the year I decided not to work and live off the funds I was saving for my own home. I could not afford $130/hr. therapies for my daughter. Instead, I learned as much as I could from the therapists at OCTC, took out every book on autism from the library, and started using the internet wisely to search for home-based therapy. I was going to fix her, or at least get her kindergarten-ready. Each day we attended playgroups or had play-dates where I would coach her on how to play with other children. Then one day my daughter said, “Mommy, can I have a play-date with you?” That was the day I stopped being the teacher/therapist and became her best friend. I finally understood: she was still a child and she needed the old me back. Since the diagnosis, she had lost me to books, the internet, and my own selfish pity. I stopped it all, and every day for that summer we just played. We went to the library, splash pads, and playgrounds. Some days, we just lay on our backs in the park and silently watched the clouds go by. She finally learned how to ride a bicycle. After two years of not understanding how to pedal, she just got it. She figured out how to wipe her bottom. No small feat.
September came. School started and Indika began to blossom. Now she’s turning into a chatterbox, and only says muffin when she wants one. We still have days. Yesterday she punched me 17 times; I still don’t know why. But those days are farther apart. She doesn’t make new friends, but plays well with the children of my friends.
I was riding the bus sometime before Halloween and passed a field of pumpkins. Each pumpkin was different from the next: round ones, oblong ones, and ones with blemishes. Not one was like its neighbour, yet each one was still a pumpkin. Even a perfect pumpkin would not be like another. That field of pumpkins broke through my last wall.
I am ready to tackle life head on, whatever may come. I am a mother, an advocate, and a best friend. And she is my pumpkin.
Rina Gibbons is the mom of a self-proclaimed 5-year-old “Wild Child” - apparently the apple landed right next to the tree. She holds a Bachelor of Commerce degree and is now in the Professional Writing program at Algonquin College. Having travelled to over 20 countries she has recently realized Dorothy was right, “There’s no place like home.”