Love, Resilience and Heartbreak

In today’s newsletter Faryal Niazi shares her personal journey of raising an autistic child. Through her words, we hope you will gain a deeper understanding of autism and the strength and resilience of parents who navigate this path.

“Oh, you did a two-hour online course and a few google searches on special needs? You must be an expert now, please give me all of your unsolicited advice.” 

This is often the response I’m tempted to give as a special needs parent, when people have opinions about my son, or about the world of autism in general. Without having spent a single day in our shoes. Because here I am, six years after his diagnosis, every minute of my day and every aspect of my life entirely dedicated to parenting an autistic child, and I still don’t consider myself an expert. 

That’s the takeaway I want readers to get from this article. Autism, or any type of cognitive disability, is not a simple equation with straightforward numbers you can crunch into a calculator to get a precise answer. And the problem with our understanding of these diagnoses is that they are often filtered through media, which usually highlights disability through geniuses or heroes like Einstein.

Whether it’s “The Good Doctor,” “My Name is Khan,” or any other media piece with a disability theme, there tends to be a desire to frame it like inspiration porn. As though being a super-hero is the obvious outcome of disability if you just try hard enough. That’s why you will often see people sharing remarks about disabled children such as “they are all geniuses in their own way.”

I’m not saying there is any unkindness meant by those; often it’s loved ones trying to find a way to empathize with a world that they don’t have to live in.  But these comparisons and this insistence on treating disability as some kind of superpower does not change the often-brutal reality. I know many people with autism go on to live successful and independent lives, but many more don’t. Do you ever read about those statistics?

No, because that doesn’t make for a pretty picture to complement the gorgeous lyrics of Gulzar and co. I mean, “tere naina” looks gorgeous when its Shahrukh Khan’s soulful eyes romancing Kajol but how soothing would it be if the movie showed Shahrukh Khan being bullied in school, suffering from suicide ideation, homelessness, unemployment or having to live in an adult care home at 60 once his parents are dead and he cannot thrive independently? Not so romantic now, but so many people with disability face these realities at a significantly higher rate than neuro-typical people and yet no one wants to talk about these possibilities.

Most people, when they sit with me and my husband, tell us only the best-case scenarios and I appreciate their love and intentions. But part of me wants to scream that we are not in the best-case scenario business here people. We live in a reality that would not always make for a nice Facebook cover photo. 

My beta Mustafa sees the world in a very simple way, they tell me. And yes, he does. But that simplicity creates so many dangers for him.

He doesn’t always know what’s edible and what isn’t, so we must keep everything behind locked doors even as he’s growing much older than a toddler.
He doesn’t gauge safety like we do so we must constantly make sure to hold his hand tightly wherever we go, to make sure he’s not trying to climb a railing or grab something sharp or throwing rocks in the air that could injure him or someone else.
He doesn’t have many words yet, even at 8 years old, and do you think you can imagine what that means? When a human being struggles to use the most basic means of communication, how that translates when he is sick or feverish but can never tell us where it hurts?
When he is crying in agitation but unable to point to verbalize what is distressing him?
When he randomly starts screaming in a public place and we start panicking and guessing what set him off: a crying child, a distant ambulance siren, a loud hand dryer in a public bathroom?

It is only when you have a child with autism that you begin to understand just how loud this world really is. A never-ending commotion of voices, noises, lights, colors and textures… which can overwhelm my Mustafa’s little brain which doesn’t process these sounds the same as everyone else. Everything can be overstimulating on a bad day.

Not such a simple world now right? 

And I know most people don’t want to leave a child lonely in this world. So they ask us to consider having more kids. They tell us to trust God and not worry about the risks of having another child with the same diagnosis and what that could mean for us emotionally, physically, mentally and financially.

Yes, let’s talk finances, in fact, the one thing people never think about when they advise others to have kids, special needs families or otherwise. Kids require a lot of money to raise. But what if you live in a country, as we do, where your child isn’t given free schooling for his condition? Where every year you’re basically paying the equivalent of the down payment on a house for your child’s many different therapies (behavioral, occupational, speech, social).

And all of that is dependent on the government throwing whatever crumbs of funding they decide your child is worth. Not a free education, that’s for sure. Unless you’re an Ambani, the world isn’t cheap for special needs families.

Paying for a respite worker so you and your husband can eat one Eid nashta together in this life.
Paying with sleepless nights.
Paying with your health because it’s not natural for anyone to exist relentlessly in a state of fight or flight, always anticipating the next danger or regression or meltdown.
Paying with your career because as a mother you spent a decade sacrificing any aspirations you had to raise your child and now, you’re almost 40 and a used-up commodity in a job market that doesn’t let you put “primary caregiver of a special needs child” as a job description.

And then they tell you did the most honorable job, and you MUST feel pride because you truly are honored to be able to rise to these challenges and be a mother to this beautiful boy every day. But sometimes, you remember being 20 and thinking the world was waiting for you, and now the world seems to have left you behind and it’s you and greying hair and dreams you are scared to dream anymore because getting to the end of the day is your only accomplishment some days.

Paying with your marriage too, because of the toll it takes on two human beings to try and take care of a child whose body keeps growing but whose mind is still a baby’s. A life that doesn’t care that you’re growing older too. You get tired too. You look across at the man you married and it scares you that he is getting older too. You wonder if those days of candlelight dinners and late night movies and having all the time in the world ever really happened. Did you ever really exist in complete and utter contentment? 

Do you know how bittersweet birthdays are when nieces and nephews who are five or six years younger than your child have already surpassed him in every major milestone? How a lot of the toys he used to be gifted were for his chronological age, but he couldn’t play with them because they don’t match his intellectual age. Some of them are still collecting dust in the storage room, waiting for him to have the skills to play with them.

Why am I sharing all the tough parts of autism instead of all the many joys (and there are so many joys, I could write a separate newsletter about them). Because I am tired of our lives being sanitized so others feel more comfortable hearing about it. Our chronic stress, his constant struggles, a life that is constantly unpredictable and confusing…that isn’t easy to live with, so why should it be easy to learn about?

Someone I love very much has diabetes and I’ve never told them “Diabetes is just a different way of consuming food.” You know why? Because it impacts every tiny aspect of their life; it’s not separate from their emotional, physical, mental and financial health. Just like autism is in ours. Autism is who Mustafa is. Autism is who we are as a family. And I don’t want to make it easy for you when it is not easy for us. That is not my cross to bear. 

None of this means I would trade a day of my life with Mustafa, because there is truly so much joy to be found in his world. I always tell everyone that he has taught me more than I could ever hope to teach him. There is no such thing as a small milestone in our life. We catalogue every word he gains, every motor skill he acquires, every accomplishment he has. A birthday card, an unprompted hug, the word Mama, putting his own shoes on, learning to use a fork, learning to zip a jacket, learning to say his ABC’s.

None of those moments have passed us by. And he is never happier than when he is playing in grass or sand or water. A child of nature, he teaches me to ground myself in the beauty of the world around me. And he works so hard, harder than any child around me. He loves cookies (and would happily trade me for a box of Oreos). He loves swimming pools and hot tubs. He loves jumping on his trampoline for hours on end. He loves wrestling with his Daddy and cuddling with his Mama. He doesn’t use many words and yet from day one, he has always found a way to ask for what he wants and needs. We speak each other’s language, even if it’s not a language recognized on any census. 

But we ask for grace. We ask for understanding. We don’t need miracle cures or random platitudes. Just ask us “is there anything we can do?” because that is truly all we have ever needed. Give us your time and give us your duas. Include him by teaching your children about him. Learn how to accommodate children like him. Make a better world for him so we can spend one less sleepless night worrying about how he’ll survive without us. Vote for politicians who don’t cut funding off for him. He doesn’t need you to turn his life into a Hallmark movie. He just needs you to open your hearts. 

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