My Son Is One Of A Billion People With Disability. Here’s What He Taught Me.
In celebration of this year’s International Day of People with Disabilities, Melanie Dimmitt, the author of Special, reflects on the challenges, joys and unexpected ordinariness of her parenting journey.
December 3rd marks International Day of People with Disabilities – a day to acknowledge and celebrate a sizable cohort of people. In Australia, where I’m from, around one in five of us has a disability. In the U.S., it’s closer to one in four. And yet, until five years ago, I had no idea this day existed. I thought disability was something I’d never need to know about or have any involvement with. Then I became a mother.
My first weeks postpartum
After a fairly stock-standard pregnancy, Arlo, my son, sustained a brain injury at birth. The doctors said we’d need to ‘wait and see’ what this meant. My partner, our parents, friends, colleagues and anyone who met our charming blue-eyed newborn insisted, ‘He will be fine.’ Six months of unmet motor milestones later, Arlo was diagnosed with cerebral palsy.
In the weeks that followed I clung doggedly to denial and cried a lot. A hefty schedule of weekly pediatric therapies commenced, and as our parenthood experience veered further and further away from the norm, I struggled to accept what was happening. What helped most in those early days was Arlo himself. The kid has some serious spunk and smiles with his whole self. It was hard to be sad when he was around.
Five years later
I knew nothing about cerebral palsy and still don’t know much – only that it covers a broad range of movement disorders. Arlo has quadriplegic cerebral palsy. For him, this means that at five years old, he can’t sit, stand or walk unaided. He communicates non-verbally and through a very snazzy device that generates speech from his eye movements. Arlo recently had a g-tube inserted, so he now eats blended meals that we syringe through a tube, straight into his tummy.
The tube-feeding was an especially tricky transition but, as always, Arlo led the way and we found our groove.
A Special book
Five years ago, if you’d told me my son would live with profound disability and wouldn’t walk, talk or eat, in the traditional sense, I would have been devastated. I was of the wildly misinformed belief that living with disability was a tragic, terrifying, life-destroying thing.
Boy was I wrong.
Back when I was reeling in the uncertainties of Arlo’s diagnosis, I buried my fear in an entirely self-serving project. I donned my journalist cap, reached out to dozens of parents across the globe who are raising kids with all kinds of disabilities, and begged them to help me. ‘What did you do to feel better at the start of this gig? How do you feel now? Tell me this isn’t what I think it is!’
What resulted was a book called Special: Antidotes to the Obsessions that Come with a Child’s Disability, bursting with the collective stories and advice of more than 50 parents, people and professionals in the disability space, all of whom assured me, it will be okay. And I can tell you now, myself, that it is.
The need for better representation
Arlo has opened my eyes to the diversity of our world. To a colossal community of people with disabilities and families who are living full, interesting and, for the most part, very ordinary lives. He’s also made me aware of the enormous amount of change that needs to happen so that people like me don’t think that birthing a child with disability – or that disability, in general – is anything other than a naturally occurring part of humanity.
People with disability need to be better represented across every facet of life – from education to the media, employment and politics. Disabled perspectives need to be elevated, not just on International Day of People with Disabilities, but on every day, in every medium and forum, at every table where decisions are being made.
If people like my son – and the world’s one billion people with disability – were properly represented in our communities and cultural markers, society’s response to a baby born with disability wouldn’t be, ‘Oh, I’m sorry.’ It would be, ‘Hey, huge congrats! How can we support this kid to be who they want to be?’
It’s been incredible to see the impact of Arlo simply attending mainstream daycares and preschools, showing his educators, peers and their parents what his disability means. How he’s a kid, like any other, who happens to need a bit of help. How without saying a word he makes friends, shares jokes, and has mastered the influential art of innocent flirtation.
Disability is simply part of life
If you are a new parent to a child with disability, I promise you, this isn’t what you think it is. That kid of yours is going to challenge you, broaden your perspectives and enrich your life in ways you never could have imagined. If you are a parent to a typically developing kid, please educate yourself and your family on what disability is. Know that it’s not something to be pitied, or treated with charity, or be inspired by. It’s human, it’s common and it’s simply a part of life for families like mine.
In the words of teacher and wheelchair user Kristine Napper, which she shares in A Kids Book About Disabilities, “Being normal means being different. Having a disability is one of the MANY ways to be normal.”
Melanie Dimmitt is a freelance journalist. She’s also a mother of two young kids – one with a profound physical disability, one medically boring, both cute as hell. Since launching her debut book, Special, Melanie has written, spoken, podcasted and advocated far and wide for parents traveling not-so-typical paths. She currently heads up news and features at disability support organization, Hireup, and hosts the NDIS Know-how podcast. You can follow her work on Instagram @the_special_book.