How my non-verbal kid helped me find my voice.

Image by Abbie Mellé.

Before my firstborn came crashing into the world I was writing at a magazine, completely unaware of the curveball I was about to be lobbed. I always figured - foolishly, on reflection - that parenthood would hardly define or dramatically change who I was. I’d found ‘my voice’ and was lucky to have a job that let me share it in print, one that saw me frantically stabbing at a keyboard till the day I was due to pop. 

Right about here is where my so-called normal life went rogue. 

For reasons that remain a mystery, my son, Arlo, started struggling for oxygen just as I was about to be induced. A fetal heart monitor picked up his distress and in a modern-day miracle (read: skilfully performed emergency caesarean) Arlo was delivered in ten minutes flat.

During his first week, which we spent in the NICU, an MRI revealed that Arlo had brain damage. We would have to ‘wait and see’ what this meant, said the specialists. ‘It will all be fine’ said me, my partner, our parents, friends, colleagues and anyone who met our charming blue-eyed newborn. Six months of unmet motor milestones later, Arlo was diagnosed with quadriplegic cerebral palsy. 

Don’t know what this is? I sure as heck didn’t. In short, for Arlo, this diagnosis manifests as a severe physical disability that affects his movement, speech, eating and drinking. 

Now almost five, Arlo is a clever and happy kid who needs a great deal of hands-on support. His first wheelchair is on its way and he uses an augmentative and alternative communication (AAC) device to speak using his eyes. Eventually, Arlo will use this thing to talk, write and explore online. At present, it’s allowing him to express some basic needs: 

“Eat bolognese”. “Play game”. “Watch Bluey”.  

With technologies like this only getting better, Arlo’s future is bright. But in the early weeks and months that followed his diagnosis, I couldn’t envisage a shred of happiness in his life - or mine. I was of the (wildly misinformed) belief that disability was a ‘bad’ thing, and this made me wretchedly sad and scared. 

I desperately needed someone to tell me that we would be okay - that this wasn’t what I thought it was, that I wouldn’t always feel this way - so I straightened my journalist cap, reached out to dozens of parents raising kids with disabilities and demanded that they do just that.

Special, a book chock-full of ‘antidotes to the obsessions that come with a child’s disability’ was the result of these conversations - a 70,000-word attempt to temper my fears and turn around my negative thoughts and feelings.  

Throughout my career, I’d written about all kinds of things (seriously, I started out on a ‘reptile encounters’ blog) but when it came to my experience of parenthood, the words wouldn’t come easy. I didn’t want my child to have a disability - and this is not something I could comfortably admit. No one wants to feel negative about their child, but it was very reassuring to discover, by way of my own excellent psychologist, that every parent does. 

Be honest. Who among us hasn’t thought, when screamingly summoned to their beloved bundle’s bedside for the umpteenth time in one night, I could murder you for five more minutes sleep.

For people like me, whose kid catapults them off the already very challenging, well-trodden road of ‘typical’ child-rearing, negative thoughts can come hard and fast. Some parents told me they thought their lives were over when their child was diagnosed. Many wanted to run away. In the early days, before your kid has had the chance to show you who they are and what they’re about, it can be hard to shake the feeling that you’d trade them in for a stock-standard model.  

Uncomfortable introspections of this kind, so I’ve learned, are called ‘intrusive thoughts. They don’t make you a bad person and they don’t mean you don’t love your child. They’ll shock you, make you feel a little weird for a second and then dissolve into, gosh darn I love the smell of your little head. 

Thoughts change. These days I can’t - and don’t want to - imagine Arlo without his disability. Half a decade and another kid (Odette, our threenager) deep into this shtick, life feels ordinary, even with some pretty extraordinary stuff going on. 

As the final chapters of Special came together, my voice became more self-assured. You can see this in the book. The first chapters, written shortly after Arlo’s diagnosis when I was burying myself in stories and advice from other parents, are quite quote and research-heavy. As the book rolls on and Arlo grows into himself, I creep out. By the conclusion it’s all me, feeling entirely different about disability and the experience of raising a profoundly unique kid.  

Special was published and landed well, to my enormous relief. Most days I receive happy-tear-jerkingly awesome messages from parents who say their thoughts have been put into words. It is cringingly cliche to say that if a book helps one person, the hardship of its creation was worth it. But it’s true. And I’m so incredibly grateful that Special is hitting the spot. 

Some of the media I did around the book’s launch received backlash from a couple of disability activists on Twitter, which made me more wary about what I say in this space. I don’t tend to use the phrase ‘special-needs’ anymore, for example, as it can be interpreted as a way of euphemising, or skirting around disability. That said, I have no problem with anyone else using this expression.  

Not everyone is going to like Special, but it’s not written for everybody. It’s written for parents who, like me, didn’t realise just how okay - sometimes better than okay - this less-travelled road can be. I’m not sure how much use it would be if it only shared how I feel now - hunky-dory, most days - when they’re flailing around in the emotional landslide of a new diagnosis. But sharing that I was also flailing at the start, exploring what helped me during those darker days and showing that, after time, I feel differently - now that’s useful. 

In a world that is largely reliant on verbal communication, sometimes I need to be a voice - and advocate - for my non-verbal son. It took time to know what this meant, and what is required, but a recent interaction with a trainee pediatrician made me realise how far I’ve come. 

After biting my tongue through a lengthy, clinical discussion about Arlo’s “issues” and “prognosis”, this trainee’s final question tipped me over the edge. 

“If you could fix one thing about your son, what would it be?” 

Before becoming a mother, I would have looked at a kid like Arlo and thought, I’d fix their body so they could walk. Now I know better. Now I know that walking (and talking, for that matter) are not mandatory factors in a person’s worth or happiness. And anyone who’s spent more than five minutes with Arlo knows this, too. 

“Nothing,” I responded. “My son doesn’t need fixing. Arlo is Arlo. I’d fix the world for him and I’d fix attitudes like yours.”

This discussion was a “learning experience” for that trainee, as their supervisor would later assure me. And although I’ve found my voice as a mother, I also have a lot to learn. So I’m taking some advice from a fellow Aussie mum - a cartoon dog called Chilli who tells her daughter, Bluey, that now that she’s found her voice, she needs to “find her ears”. 

Everyone’s experience of parenthood is different and, as I’ve discovered, things don’t always go by the book. I’m finding that in order to be a better parent and person on this planet, sometimes the best thing we can do is listen. 

Buy Mel’s book Special: Antidotes to the Obsessions that Come with a Child’s Disability
Words By Melanie Dimmitt / @the_special_book / Image by Abbie Mellé