An Extract From SPECIAL: Antidotes To The Obsessions That Come With A Child’s Disability

When Melanie Dimmitt's son Arlo was around six months old, he was diagnosed with Cerebral Palsy. She had just returned to work - writing at a magazine - and was, in her own words, devastated.

Although Arlo hadn’t hit any of his gross motor milestones like holding his head up or rolling over, Melanie found herself in denial. “In the weeks that followed I must have Googled ‘cerebral palsy misdiagnosis’ a million times”, she says. “I was miserable for months.”

But, as all parents know, raising children is relentless. There are no days off. And so, with a schedule of appointments to attend, Melanie and her little family carried on, as life does.

Now a mother of two (Arlo’s little sister Odette arrived in 2018), Melanie has poured her experiences into a book – proving just what a master of time management and sheer force she is. “Writing is a fantastic distraction. In my early years as a parent it was the only thing that hit pause on my obsessing over what was happening with Arlo.”

Melanie has generously shared an extract from her book Special with The Grace Tales. It’s as witty, wise and wonderful as she is. Stay tuned next week for an interview with Melanie as she takes us through her motherhood, parenting, and book-writing journey.

Nothing compares

3 April 2017

Yesterday I was in the children’s department of David Jones trying to find a Fisher-Price ‘Musical Pop-tivity Table’ for Arlo and, despite discovering they don’t have it, lingered a little longer to admire the beautiful, Scandi- style mahogany highchairs that would surely enhance any room they happened to grace. Arlo’s plastic highchair was an eyesore even before being pimped by his occupational therapist, and since having it fitted out with foam blocks, in a putrid shade of pink (now sporting a grotty crust of puree), it’s been a downright depressing, omnipresent reminder of his limitations. So today, I ripped the foam out, and Arlo’s eaten his breakfast and lunch at somewhat of a right angle, precariously lurched to one side. Am I a bad mother?

We’ve still got that highchair. And while I’m happy to report that Arlo now holds himself pretty well upright within its tacky plastic encasing, it remains an eternally ugly item. In the early days of this game I tried, desperately, to squish my unconventional son into the mainstream kit, which the plastic highchair, prior to its makeover, at least was. (Arlo’s assigned highchair-slash-wheelchair is stashed firmly in the garage.)

Our highchair, in all its landfill-bound glory, is the physical embodiment of our special situation. It’s not what I wanted or envisaged.

Just as I compare our plastic monstrosity to the majesty of the mahogany highchairs, I compare our experience of parenthood to experiences that appear typical. Of course I do. We measure our lives against the (perceived) lives of others at the best of times. It’s human nature, as our most primitive of ancestors demonstrate in a classic study about fairness by Sarah F. Brosnan and Frans B. M. de Waal. In this study, a number of monkeys were given either a cucumber slice or grape, a treat they happily accepted. But when observing their peers receiving a sweeter, juicier morsel, the monkeys with the cucumber slices became enraged, often hurling the slice back in the researcher’s face.

Having a child with a disability pulls our scenario into sharp contrast with those of other families, other children and the dreams we had for our family life. And while appraising ourselves against others has its evolutionary benefits – monkey see, monkey do – when you’re the one with the cucumber slice, or the crappy high- chair, comparison doesn’t feel good.

How then, when our situation doesn’t even start in the same league as the typical sort, do we combat a comparative mindset? Or perhaps even see the grass on our side of the fence as a few shades greener?

There’s a person on this planet whose job it is to answer this very predicament. Her name is Lucy Sheridan. She’s the world’s first and only ‘comparison coach’ and I’ve got her in her trackie-dacks, sat in her lounge room in Hove – a seaside town right outside of Brighton in the UK. ‘Just because you’re having a certain parenting experience doesn’t mean you’re not going to get those fist- pump, running-through-a-meadow moments with your child,’ she says, with British matter-of-factness. ‘But I imagine the resistance to acceptance can be very strong. Having a family can be a big goal, for a long time, and we are sold a very cookie-cutter image of what that is, aren’t we?’

We sure are, Lucy. And if you look closely at that image, you’ll notice a mahogany highchair sitting pretty in the corner.

I wasn’t conscious for Arlo’s birth – having been anaesthetised minutes before his delivery – so I didn’t get that photo. You know the one. The victorious mother, glistening with perspiration from her laboured efforts, when she is handed her reward – a squidgy newborn that nestles, ever so naturally, into her waiting bosom. She looks down, smiles, and *snap*.

I felt mugged of that Kodak moment – one that I imagined proudly posting to my social media channels, captioned with baby’s name, birthdate and ‘mum and bub are both happy and healthy’ – and also felt robbed of the heroic birth story (not to mention the 400 bucks we spent on birthing classes) that, after nine months of balancing this kid on my bladder, surely I was owed?

But before I harp on any more here, some perspective, please. A heap of babies with disabilities enter this world off the back of a really shitty birth. However, so do a hefty smack of typical ones. A friend who haemorrhaged in the final throes of her lengthy labour was also put under general anaesthetic, and we often relate over feeling sore about missing our money shot. Another friend, who had his baby through a surrogacy program in Thailand, missed every minute of his son’s entrance into the world when the punctual little pet decided to come early, sending said friend and his partner scram- bling to jump on a plane. ‘There’ll be other Kodak moments,’ he told me when I whined to him about the gaping hole in my (iPhone) photo album. And he was right.

There are many love stories that don’t start with smiles in the opening scenes. And for the ones that do, there’s a bleeding pile of placenta and god knows what else just out of shot. That’s right. People who appear to get your dream scenario aren’t actually living the dream. No one is. The early days of parenthood are seasoned, if not soaked with dissatisfaction. Even if things had gone to plan and you weren’t comparing your special situation to unspecial ones, I guarantee you’d be beating yourself up over something or other not reaching the lofty heights of your expectations.

But I get it. Your baby’s ‘best start to life’ got bazooka-ed, and what you wouldn’t give now to be struggling to get your young’un latched to your boob rather than sitting beside an incubator, watching them nose-feed through a tube, right? And it’s not as if this lot in life comes with a get-out-of-jail-free card on the comparison issues you were already dealing with.

‘When you’re a parent who’s having a different parenting experience because of what your child’s needs are, that will start a new level of comparison,’ says Lucy, our comparison coach. ‘You might have compared your body all through your life, or compared your career … everyone will have their own trigger. So you need to be extra gentle because it’s not like this sort of comparison is going to replace all the others. It will be adding to it, so anything that you can do to press reset is really important.’

I chose to own up to Lucy, telling her about the shameful strategy I use to ‘reset’ when comparing Arlo’s stall-start to life to the sweet skin-on-skin beginnings of others – an inner monologue that’s usually some variation on, ‘Their perfectly born baby will probably grow up to be a moron, a murderer … or mind-numbingly boring’.

‘Sorry to be controversial, but I like that,’ Lucy grins. ‘On a really dark day, if that means you can get out of bed in the morning or go to bed at night … have it. Truly, have it. If you’re on the edge of trauma, that just helps you dispel it and brings you back to the moment. It’s a survival mechanism, isn’t it? It’s appropriate to have mean thoughts. You weren’t perfect before, you’re definitely not going to be perfect now and you’ll be tested more than other people.’

Add ‘permission to think like an arsehole’ to your arsenal, dear friend. And brace yourself, this is just the beginning.

This is an edited extract from Special: antidotes to the obsessions that come with a child’s disability, Ventura Press, RRP $32.99.

Photography: Eamon Dimmitt