My Child Has Autism

A first born daughter gave birth to the first grandson. It wasn't scripted but it could have been. This was a big deal in a traditional family of Italian descent. Finally, someone to watch soccer with Nonno. I was blissfully witnessing Christian Alexander being passed around in the recovery room of Oakville-Trafalgar Memorial Hospital on a wintry March day nearly 14 years ago. He was born on the same day as his Nonna. March 11. It was no wonder she arrived at the hospital early, even before me, ready to welcome our bundle of joy into the world. But a Nonna's excitement is allowed to match her daughter's. It was a special day indeed. It didn't bother me one bit that I was puking my guts out over the stiff concoction of epidural mixed with painkillers. I learned morphine just didn't agree with me. I was instructed not to hold my newborn until the formidable grip of meds faded away but everyone else in the room happily took advantage of my predicament. I felt a slight tinge of disappointment as they all got to hold my baby boy while I couldn't. Adorned in his teeny blue knitted hospital hat, he was warmly embraced by his girl cousins who thought he was quite the novelty. Everyone wanted a chance to play with the shiny new toy. Fascinated by his little private part and his being male, they giggled with glee, fighting over who would hold him next.  I couldn't help but notice all the attention he was embellished with, thinking this was only the beginning. This baby could grow up into a man who could become president of his own fan club someday because, of course, he was already quite the stunner, at just 2 hours old! As it turns out, I was right. He is always surrounded by an adoring posse of young females who delight in helping my son with anything he needs help with. I was a thrilled new mom and very scared as I had no clue what to do with him once he came out of his cozy cocoon! My poor mother quickly became my on call personal baby assistant. Of course, this was no suprise to her. It's a role she welcomed with every new addition. You can say I was lucky or unlucky to have had a C section. The down side was more recovery time because it was a surgical procedure. Damn catheters, is all I have to say. The upside was not feeling a thing when my 8 lb 2 oz angelface came out. As I lie there, all I could see was the white sheet in front of me, which acted as a barrier, when suddenly at 12:12 pm, I heard ear splitting cries as I saw a tiny head being held up at the other end. And there he was. He made his grand entrance into this world with a good pair of lungs. That was clear to the entire hospital wing.  And although I didn't feel a thing, I could have gone deaf at that very moment. I can't believe there was a baby in there. I often wondered if it was because the anesthesiologist administered a little more freezing than I needed. Judging by the size of that needle in his arsenal, I wouldn't be the least bit surprised. I have not seen a more mammoth needle since that day. I will never forget it. He looked just like Santa Claus, and Christmas came early or late, depending on which way you looked at it. Except this Santa liked to play with needles. We jokingly dubbed him "Bad Santa."

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I remember when I found out I was expecting. My first clue was the delivery of a fresh bouquet of flowers from my across the street neighbour Hannah as a thank you for taking care of her runaway cat Virgil. Virgil the cat wanted be to adopted by our household. He spent every waking and sleeping hour at our house. As I went to smell the flowers in all their splendour, I felt nauseated. And then I missed my period, to back up that first clue. A positive pregnancy test followed and a subsequent blood test confirmed the results. I did everything right. I didn't drink or smoke or consume alcohol or caffeine. Not that I ever did those things anyway. I remember being careful with my fitness routine and cut it down all the way to stopping altogther. I made sure I ate well and can remember always having an abundance of fruit for breakfast. There had to be at least 5 different types. The only bad meal I ever indulged in was what I coined my "KFC pig out" the eve before my son was born.  I was told not to eat after midnight as I was having a planned C section the following day. I chose KFC chicken, french fries, cole slaw, potato salad and garlic bread as my "last supper". My son ate like a King before making his world premiere. I was always careful about resting when I needed it.  I would lay in bed watching the popular soap opera The Young and the Restless every day at 4:30 p.m. while my son kicked up a storm. I used to love seeing his pointy elbows or knees leave imprints on my tummy. To this day, whenever he hears the Y&R's Nadia's Theme, he stops everything and goes into a trance like state. I know he remembers this song from when I watched the soap opera with him nestled in my tummy. And it remains a soothing and calming force in his life. Not so much for me. I wish it were that easy. He seemed perfect the day he was born. And he was. He still is. ​​

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​I didn't begin to notice he was different until he was 3 years old. That is when the clues began to reveal themselves. He had missed many milestones for typical kids his age. And he seemed starkly different in comparison to his cousins, who were all similar in age. He did not say one single word or even mimic any sounds or sound patterns. He did not know how to play with toys properly. Instead of pretending to drive a toy car, he would fixate on the wheels, and spin them endlessly or chew or tap on the toy car. These behaviours prompted further investigation. So, we took him to our family doctor. The family doctor ended up being clueless. He was of the opinion that our son was simply a late bloomer. That individual children develop at their own pace. He told us the story of how his own developmentally delayed nephew, who was now a Harvard graduate and fluent in several languages, couldn't speak until he was 7 years old. But even having accepted his theory that children develop differently as being plausible, there was a gut feeling which persisted, call it mommy's intuition, and this challenged everything the doctor said. I just couldn't take his word for it and I didn't. And because I was my persistent, truth seeking self, I did all I could to find out what was going on. The regrettable truth facing modern medicine is a lack of education for medical doctors in medical school about autism. And it's a colossal failure in the system with far reaching effects. Family practitioners are the first line of defence and they are ill equipped to even know the signs of autism. 

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​Autism is a spectrum disorder (ASD), meaning, there are many variations of autism under the same broad spectrum and no two individuals are exactly alike, even though they share the same diagnosis, whether it's mild, moderate or severe, or the autism diagnosis is accompanied by secondary or additional conditions. But although it is so complex as the child grows and develops, the early signs when children are toddlers are universal across the board. And they are not difficult to detect in all children when they present with the early signs of autism. But doctors don't always know what to look for. This is where the system fails. The curriculum needs to be updated as autism is a growing epidemic and therefore it would be irresponsible for the medical profession to exclude a condition that now affects 1 in 59 kids, and four times more likely to affect boys than girls, according to 2018 statistics from the CDC (Centre for Disease Control). Doctors need to know what the early signs are specific to autism spectrum disorder, so that they could better direct new parents toward the proper treatment and intervention for their child. Early intervention is crucial. The first five years of life are pivotal for a child's intellectual development. The decision to ignore the family doctor was a smart one. It led to the truth. Fortunately my brother-in-law, who is a lawyer, referred us to his colleague who was a child psychologist. In Ontario, in order to even diagnose autism, your child would have no choice but to dawdle on a waiting list for one year. Wasting precious learning time. And once diagnosed, your child would linger on yet another waiting list for an additional year, awaiting treatment options. The treatment was government funded until your child reached a certain age and was then discharged from the program, making room for another child on the waiting list. Within two months, we had an appointment booked with the child psychologist and avoided the year long wait list.

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Christian, Patricia and her parents

​I remember feeling overcome with anxiety as we pulled into the patterned concrete driveway of the psychologist's office in the affluent The Kingsway neighbourhood of Toronto, Ontario. The butterflies in my stomach began to do somersaults. Dr. Mary Konstantareas worked from her home office on this day. So, after our introductions, we followed her downstairs to her basement. It was a glorified play room full of toys and blocks and other fun study aids which she would use to conduct various tests on our son to assess his level of development. I was struck by the welcoming atmosphere and how lurking beneath the fun and innocence of the toys and games, could be a sinister, soul crushing diagnosis which could change our lives forever. After several hours and seemingly endless testing, she was ready to hand down her verdict. I can't tell you what it feels like when a doctor says to you "I'm sorry but your son has autism." All I can tell you is that in that moment, you are sent into a tailspin. The butterflies jumped off the edge, into a free fall to the ground. There was no stopping them. It was a shock. That was just the beginning. And I felt as if I was grieving a death. Looking back, I was. I was grieving the loss of the life I had expected for my son. The loss of a life that I had planned for my son. The life that many other children had. And my son wouldn't. I realized at that point that his life would be different. He would have to struggle. He would have to endure a hard road. I felt sorry for him, sorry for myself. The reality of his diagnosis brought me to tears. It was a profound sadness. And right away I blamed myself. What did I do wrong? Why me? Why my son? Questions rushed through my mind like a freight train. And the questions to this day still linger. As I have progressed further down this road and deeper into this journey, I have now realized I will never have the answers. And I have learned to live with that. Not everything in life is meant to be explained. For there is a reason for everything, we just don't know what it is. I isolated myself for several weeks before coming to terms with my son's diagnosis. It brought me to my knees and it took awhile to regain my footing. But you realize that when you're down, there is only one way out and that's getting back up. And then we began to get to work on his treatment plan.

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​We decided to bypass the wait lists and funded our son's therapy ourselves. This was no easy feat and the expense was astronomical. Nobody can plan for this type of a financial hit. Rather than have Christian sit idle on a wait list for a year, wasting precious time, we decided we would fund his therapy from our own pocket until he joined government funded programming. Within three months of learning our son had autism, we had assembled a team of therapists, with Dr. Konstantareas acting as supervising psychologist, and his treatment plan came to fruition. The most effective treatment was IBI (Intensive Behavioural Intervention) which was implemented one-to-one in our home for up to 40 hour a week. The therapy focused on "learning to learn" behaviours: immitation, co-operation and attention and it's designed to prepare children for school and to adapt in neurotypical society. Although some people called us crazy for taking on such a huge expense, we decided that investing in our son and his future was the best investment we could ever make. To this day, there are no regrets. 

​His very first Christmas party was my very first epiphany as a mother who was new to the parallel world of autism. Striving for some degree of normalcy, we thought it would be nice for Christian to see Santa. To know what Santa represented and what Christmas was all about. We were hoping he could develop some understanding which would lead him to experience the joy that other kids experience during this magical time of the year. The anticipation of opening presents on Christmas morning. Leaving cookies for Santa with a note attached about how he was a good boy this year. Sneaking a peek in the wee hours to see if Santa had taken a bite of the tasty treat he placed beside the glittery tree. We wanted to introduce Christian to other kids who were just like him. The event was held by Autism Ontario, Halton Chapter at an Oakville, Ontario banquet hall. As we entered the room, I was struck by the thickness of the bitterness in the air. It was palpable. And it surprised me, although it didn't surprise me at all. Many of the parents in that room seemed down, and bitter. Resigned to their fate and had lost their joy in life. I remember consciously thinking how sad this was. I told Christian's dad then and there that I will never be like them. That I refuse to be down or bitter. And I meant it. A free spirited, unrestrained joy of life had always inhabited my soul. The innocence and inquisitiveness of that little girl was threatened by the harsh reality of autism. She is always threatened but I have hung onto her at all costs. I am proud to say today she is still alive and well. But it hasn't always been easy not to be swallowed up by sadness, anxiety, fear or just sometimes feeling alone and misunderstood, or not understood at all. Although I have days when I am down and find it hard to get back up, I never stay down. I struggle at times to see the joyous side of things. But I have finally realized that it took navigating through the pain to do it. I discovered that elusive joy through the road less travelled. I appreciate things more. 

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​Paradoxically, in the chaos, I have discovered many truths. Band aids don't heal the wounds created by autism. Medicines don't make autism better and make it go away. A doctor's word is never gospel. Kind words from well intentioned people don't change the fact you live with this life long diagnosis. All you have are coping mechanisms, trial and error, conflicting medical literature and doctor's opinions, and a survival instinct which allows you to persevere, even when, at times, you feel like a complete failure. The one thing you always have left at the end of every day is hope. And hope can be a life saver. It can change everything. I have often asked myself how different defines me. How does it define my son? And the answer, in short, is that it makes us stronger. This is the answer everyone expects to hear. But it goes deeper than that. I was sent on this path for a reason. My son. He is a gift in disguise. I just needed to see it. And God gave him to me so that I can dig deeper. To try harder. To become stronger. To become wiser. To grow as a human being, as a mother. To find happiness, appreciation, and enlightenment on the other side of struggle. 

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​Everything my son does is a gift. Despite his abundant challenges, I see the radiant beauty which embraces him, in all that he is, and in all that he does. I have realized that what appear to be small things really are big things. And I notice what is important while others who have not struggled may never see the very same things. I call myself enlightened because I believe you see things differently and appreciate things differently when you have been challenged, beyond your limits, beyond the norm. I thought my heart was big enough. But it keeps expanding for my son, to welcome his every victory and celebrate every new step he takes. 

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​Today, Christian remains unaware of who Santa is or that the North Pole even exists. He doesn't know why we give gifts although the one thing he has always loved to do is tear the wrapping paper off the presents. He is joyful on Christmas morning doing just that. He doesn't even care what is in the box. If Santa brought this good little boy slinkies for the rest of his life, then Christian would be happy. My son is pure and simple. He doesn't need the latest iphone or designer clothes to be just like his friends, or to be accepted. Although he might object if you take away his pizza or french fries. 

​He is just who he is. And that is his super power. Being himself, despite judgment, despite a world he must conform to all around him, he manages to hang onto his innocence, a joy which remains unaffected by negativity or people who can't get along. The tinge of his rose coloured glasses will never fade. He is happily oblivious. He is growing every day. And I lament how I wish I could stop the clock. How I wish he would never outgrow his mommy's lap. He is becoming a man before my very eyes. Yet his naivete and innocence is a stark juxtaposition to his physical growth. Like a kid in a man's body. It is a right of passage but with it come new worries about his future. I will always wonder, will he ever be able to speak, or be able to drive, have children of his own, or even become independent? What will he ever do without me someday? These scary thoughts haunt me. What gets me through the day, besides my humour and joie de vivre despite the challenges? The fact my son is smiling. He is always smiling. And laughing. He has a condition but that condition does not bring him down. It does not define him. I see a little boy becoming a young man who although still innocent is a wise soul because he's had to go through a lot. And he has worked hard to achieve what comes easily to others. I am immensely proud of him. My son is happy. And that is more than I can say for many people, who have it all. They have their health, are financially stable, and have so much to be appreciative of in life and still aren't. It seems nothing is good enough, or ever enough. Yet my kid is happy despite having autism. He is. Just. Happy. I think he can teach us a lot about the secret to happiness. Appreciate what you have, and be who you are. If you take the time to see it, you will be graced with the presence of a person who will teach you so much about life, and about yourself. To see such elusive truths, and to become enlightened as a result, is also a gift. One of my favourite quotes by Leisa Hammet sums it all up. "Life is... not about counting the losses and the lost expectations, but rather swimming, with as much grace as can be mustered, in the joy of it all." We still have bad days. We are human, after all. But my son inspires me through the bad days. If he can make it, then I can make it. 

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