Raising an Atypical Child in a Typical World

Spring 2019

Spring is beautiful in Islamabad. The air is crisp, and the sun is warm. We are sitting inside our favorite cafe, surrounded by laughter and happy faces and the “clink clink” of cups and mugs and cutlery. I notice through my blurry vision that my husband, Talha, and my daughter are wearing the same color, “twinning.”

This would have been celebrated as a happy coincidence under different circumstances, but as I blink to fix my blurry vision, a tear falls down my cheek. I glance at Talha and see him blinking off his own tears. Our child is eating cheesecake without a care in the world. Meanwhile, two grown humans are crying, unnoticed, and it felt tragically poetic. A barrier between us and the world had materialized. It appeared that the life we had started imagining together just a few years ago, as two young humans in love, would change forever.

We had visited a developmental pediatrician just an hour before and had been informed that our child was not only speech delayed, but there was a “possible” diagnosis for Autism Spectrum Disorder (ASD). You see, when we become parents, we say the “ten fingers and ten toes” bit, and if all checks out physically, we high five each other, as if that is all that matters. The first thing I thought of as the pediatrician spoke was, why me?—which is still a recurring question in my mind. I was naive then, as my life was filled with nuances I could control, fix, and mold to an extent. It was comfortable enough for me to always be grateful.

My privilege made me believe things like these did not happen to people like me.

Maybe that sounds prideful. But I wanted to comprehend the logic behind this occurrence. Find a reason. Neither was provided. Just a “let’s see in a few months.”

That weekend, after the pediatrician visit, we only had a brief reaction time (merely forty-eight hours of stress eating, ugly crying, and imploring to the heavens). There was grief brewing, but it was always pushed aside. Whenever it was allowed to resurface, it made everything too debilitating. There is no time to sit with feelings, we thought. We had to get our child help. And fast.

For her sake, we adopted optimism.                               

One month later, we started speech therapy. There, I met with mothers who appeared older than they were and much wiser than they should have been. I wondered if that would be me soon. It was another world. Yet comfortable because it was non-judgmental. No unsolicited advice on parenting and discipline was imparted. Nobody asked me questions that brought forth a heart-wrenching feeling of guilt of whether this predicament was because we had fallen short as parents or had failed to follow some twelve-step regimen from the non-existing parenting guide.

This was the time in my life when I was an extrovert who inadvertently shut the world out. 

I used to recite Prophet Musa’s dua, “My Lord, expand for me my chest [with assurance] and ease for me my task and untie the knot from my tongue so that they may understand my speech.”

I wanted my child to speak and understand.

I implored to Allah, just as Musa (AS), who had a stutter, had done. 

Musa (AS) had asked His Lord to give him powerful words that best delivered his message to his people, and I asked the same prayer for my daughter.

I think I discovered the true meaning behind this verse for the first time in my life, rather than reciting it from memory in a language I could not even translate.

Winter 2019

Hope and faith kept us going, and we began noticing improvements. We actually believed we could reverse “it.” Nothing screams denial disguised as hope more than calling something “it.” Talha and I were wading in the shallow pool, not daring to swim toward the deep end because we knew we would drown.

Around that time, we also found out we were going to have another baby and would be immigrating to Canada. My siblings were eagerly waiting for me there, and I looked forward to family support and better prospects regarding our predicament. We welcomed that change. At the same time, the transition felt foreboding.

During our initial days in Canada, my child used to have meltdowns in the middle of the park because she hated the never-ending cold and the layers she had to wear. My brother often scooped her up and carried her all the way back to his house, while hoping nobody mistook him for a kidnapper. I just waddled behind them like a mama penguin, praying to my God for better days.

Fall 2020

We got an official diagnosis for ASD for our daughter while in COVID lockdown. It was an isolating experience because nobody was allowed to be there for us in person. My sister managed to sneak into our condo building with a pot of biryani because we were too broken to think of what to cook and eat. But while hope shattered, the limbo ended, and there was finally closure. Parents are allowed bad days, but at some point, you have to get up to be a parent. Work, school, bills, meals, and diaper changes wait for no one. Once again, a new kind of hope was born out of the ashes of the old one.

It had finally dawned upon me that Autism does not require a cure since it is not a disease. It is “managed,” and the only reason it needs managing is because we live in a world designed to cater to the needs of one kind of person.

I refuse to believe that my God—who created so many living things, microorganisms and deep sea animals, mountains and rivers that are all unique, and so many yet undiscovered—He who ensured each and every one of us had a different set of fingerprints, would make all humans the same, all brains the same. I don’t think Allah created cookie cutters.

Hard work centered on this very belief started paying off. Our girl talked. And joked. And argued. She started learning on the same level as her peers, she started to read the Quran, and was part of co-curricular activities. She was, and is still, autistic obviously. At present, socializing and inclusion are the biggest challenges, but that is a story for another day.

The last bit is a constant heartache.

This is our grief that ebbs and flows. 

This is our grief that ebbs and flows. If you are wondering why, when our kid is doing seemingly well, it is because just as we were celebrating our small wins, our son too received an unexpected diagnosis for Autism. And he presented a different, much greater set of challenges—the biggest one being not having any sense of safety and security; and again, not having any words.

Oh, the number of times I think about how I have taken words for granted my entire life. I have always had so many things to say. I only know now what they mean to me while I scramble through the din of silence.

Summer 2022

When we found out about our son’s diagnosis, we succumbed to the kind of depression where you don’t want to wake up in the morning. We took the news with blank faces and numb bodies. It was like a cruel joke. The grief that we had kept suppressed finally broke skin and hit us like a ton of rocks. All faith and positive thinking went out the window. 

I know we use “grief” for loved ones who leave us, but for me, this word has another meaning.

It is a living grief—the loss of a life we thought we would have, the loss of dreams that now seem impossible, the loss of a certain kind of life we envisioned for our kids, the uncertainty of the future, the constant stress, and the brain working non-stop to ensure safety and security for a child who does not know what they are.

The thought of being a lifelong caregiver to your children can at times take away those moments of joy all parents deserve to enjoy. I have asked Allah “why” many times. And He has answered—through His words in the Quran, through a chance encounter with someone, through a dream where my subconscious mind takes over. This is what was chosen for me, and if it would not have been this, it would have been something else. Perhaps I would not have it in me to face a different type of test, so Alhamdulillah for this test, because it means I have His mercy in so many other areas of my life. It means He is aware I can take this burden; and while I do not wish to glorify pain, we are all given our due share of pain at some point in life. After all, what would I know of joy if I didn’t know pain? And what control do any of us have over when and how we receive both joy and pain?

Of course, we have good moments even within rough days, and we cherish them like that flower you want to hold on to—so you place it between the pages of a book and press it down to preserve the remnants of its beauty. It is all His will and qadr, but it is the wish of a parent that their child may experience this beautiful world with ease.

That same summer and beyond

One summer day, as if waking up from the stupor of grief—or maybe it was just an interlude—I said to Talha, “Let’s go to the beach.”

“Now?”

“Yes.”

“Which one?”

“Don’t care. Just drive and hit the first one.”

We grabbed a blanket to sit on, cut open a watermelon, and took any snacks that were in the house and drove to a small, imperfect beach where, while attempting to take a selfie, a sweet matronly lady offered to take a picture. As she held up the phone, my mind wandered…

Like I said, life had turned out different than we imagined; there was round-the-clock planning as opposed to spontaneity, our careers had taken more twists and turns than the highway coursing through the Karakoram, there were hardly any stamps on our passports, there was the probability of our kids not being as independent as their peers, and perennial uncertainty. But many other things remained the same: what we felt for each other, our flair for creativity, our determination to keep growing and adapting to change. The adventure we sought was still out there, but it was also within us and this little life we had crafted.

“Why, aren’t you the most perfect little family. God bless ya!” Ms. Jolly (yes, I named her) remarked, and I exited my reverie.

We looked past crashing waves, over the horizon.

In this world that insists on existing for just one kind of human, our little humans would be just fine.

We were always meant to do this, to be here. It would all be okay.