The twelfth day of the twelfth month of 2020 rerouted the course of my life. My daughter, Emma, was formally diagnosed with autism spectrum disorder that fateful day. It didn’t come as a surprise–we went for an assessment earlier in the year to address my maternal hunch, and by the end of the year, we finally got to see a developmental paediatrician to confirm what we already knew.
I wasn’t sad when I received the news. Maybe I had time to prepare myself, or maybe I had already accepted the fact long before a professional verified it. Maybe it was the countless articles I had read about autism that enlightened me with information I never thought would be a part of my parenting manual. Maybe it was the realisation that even with the diagnosis, Emma’s still the same bright and bubbly girl she was the day before.
Or maybe I was telling myself all these things to feel better.
The why-mes and the what-ifs
It gets hard sometimes. Motherhood, in general, isn’t easy. It’s even less easy when you’re ill-equipped, short-fused, and have a head full of doubts about your own ability to parent a child, let alone one with special needs. There are days that I’m certain of myself and my capabilities and caring for Emma feels like a breeze. Other times, ticking a single box on the day’s to-do list requires a lot more elbow grease. It’s like the Rosie the Riveter in me just downright refuses to surface, leaving me in an “I-can’t-do-this” loop.
I cannot count how many sleepless nights I’ve had lying in the dark, mentally flipping through a catalogue of why-mes and what-ifs. And these nights are almost never tearless. The tears aren’t of sadness though. I’m not sad that my daughter is neurodivergent–that’s what makes her uniquely Emma. But recently, in a much-needed moment of wisdom, I realised that I cry because I feel guilty. I feel guilty for coming up short; for not trying my best to be the mother my daughter deserves.
After learning that my daughter’s understanding of the world will always be different than that of her neurotypical friends’, it’s been a rough ride trying to find ways for Emma to thrive in a world that functions on conformity. It’s truly disheartening that an ableist world is what we live in.
Stepping behind the scenes
One time, Emma had a little tantrum at a shopping mall. She was in a fit of tears and refused to let me calm her down. I could feel the heat of judgmental stares scorching the back of my neck, as I tried my hardest to soothe Emma. I’ve been told that this is a common situation faced by spectrum mums, but that doesn’t sit right with me. Why should spectrum mums – or any mum – put up with this kind of disapproving reaction?
We don’t know the story of a person, especially one with a hidden disability like autism. Most of them have trouble communicating their needs, let alone articulating how they feel. And their feelings are very much determined by how their senses are stimulated, and sometimes, these big feelings translate as tantrums and meltdowns.
On another occasion, Emma couldn’t sit still at a family event. She was just being her playful self, but to the eyes of many, she seemed unruly. Comments came left and right, and explanations by my husband and I followed suit. It has become a norm for us to have to explain Emma’s behaviour. I even find myself making apologies to strangers sometimes, though my husband has been telling me that I don’t always have to do it – not when Emma is harmlessly being her usual joyful self.
A mother’s worries
Before Emma’s diagnosis, like most mums, I worried a lot. I worry even more now, and the worries of a spectrum mum are different, and I dare say, more intense. I’ve always had hopes and dreams for our family, but they’re now subconsciously intertwined with fears and uncertainties. What sort of future will Emma have? Will she transition into adulthood with ease, or will there be more challenges that lie ahead? Her body will change, but her ability to understand the world and capacity to explain her thoughts and feelings might not grow as naturally and inevitably. It seems unfair sometimes, but I can only trust that I’m doing all I can to teach her how to navigate the world.
The biggest and possibly the most haunting worry of all–and I’m confident all mums have thought about this–is what will happen to Emma if I am no longer here. Nobody knows her the same way I do. I know her needs, even though she can’t express them, and I love her in ways nobody else comes close to, and she knows it. Emma has family and friends who love and care for her, that’s for certain. When she falls and cries, they would come to her aid–but I would rush. They show up, but I stay.
There’s nothing I wouldn’t do for my girl, and it breaks my heart to think that she might not have someone giving her the same kind of fierce love that a mother would provide to her child. Whenever this overwhelming thought crosses my mind, I must remind myself that whatever happens, Emma will be taken care of by the ones who love her.
Don’t get me wrong – raising a child on the spectrum isn’t all doom and gloom. In fact, for the most part, these pessimistic thoughts are only in my head. I love the fun, fearless and truthful girl that Emma is. Her whims and will keep me on my toes, and no two days have been the same. She’s better at socialising now, which makes playdates more fun and frequent. I have amazing friends with children who are not only patient with Emma, they’re also sincerely learning about her differences. If the way these kids are being kind to one another–without prejudice and exclusion–is an inkling of how the future is going to be, then I get to sleep well at night knowing that Emma has good friends in her life, just like I do.
Emma and I have also met wonderful strangers along the way. There have been a couple of instances when Emma would be all over the place and I would have to explain her autism to strangers, but bless them, they smiled at me and reassured me that it’s all good; that she’s just having fun. One kind stranger even reminded me to keep an eye on Emma’s talents, because a person with autism has the kind of focus that can create and innovate in great ways. While these occurrences are few and far between, they are lasting encouragements that I will carry throughout my days as a spectrum mum.
So, I was right. Emma is indeed the same bright and bubbly girl as she’s always been. The diagnosis didn’t change my girl, and it certainly does not stifle her ability to progress and grow healthily and beautifully. It has however, in the most amazing ways imaginable, changed me.
And I believe, with my whole heart and with every little frayed fibre of my being, that that’s the whole point.
By Aalia Manja
Personal photos from the writer’s own collection.
Our thanks to Aalia for sharing her story of authenticity, grace and strength as part of makchic’s recent “My Story” Contest. If you have a story from your own parenting journey to share with our #makchicmumtribe, please drop us an email at firstname.lastname@example.org – we’d love to hear from you.
And if you’re a parent of a child on the spectrum yourself, we hope that our earlier articles, “Getting Started with a Special Needs Child” and “Tips for parents with children on the spectrum during this MCO” might prove helpful to you in your ongoing journey.