'I'm trying to be worthy.' The disarming reality of parenting a special needs child.

Melanie Dimmitt is an author and mum of two. Her son, Arlo, has cerebral palsy.

Melanie’s debut book Special is a candid companion for parents who are coming to terms with their child’s disability. Here, she shares an excerpt on letting go of the idea of pristine perfection, and creating your own.

Perfection is not possible. Period.

Nevertheless, the idea of it is pervasive. Images of people doing ‘perfection’ run rampant before our eyes and embed themselves deep in our brains as pretty, yet implausible benchmarks. There’s the perfect pregnancy, with its euphoric ultrasounds and ‘I just swallowed a basketball’ bump.

The perfect birth (au naturale, of course) and the resulting perfect baby, completing the perfect picture of familydom. It’s a fantasy and we know it. Right up there with the perfect partner, perfect job and perfect body. And still, a lot of us struggle with letting go of this aspiration– this striving for what we, and society, deem to be ‘perfect’.

There’s a brilliant memoir in the special-needs space called Bloom by American blogger Kelle Hampton. She had her ‘perfect’ setup – lovely marriage, typically developing daughter, yadda yadda.

She was primed to keep on polishing it with a second child until said child shook things up by being born with Down syndrome.

Mia Freedman chats to Vanessa Cranfield about parenting a child with a disability on the No Filter podcast. Post continues after video. 

In Bloom, Kelle uses a white picket fence as a metaphor for the ‘perfect’ family state. Kelle has a child with disability and so, metaphorically speaking, she now has a brightly coloured fence.

If we’re rolling with this image, know that your fence can be any colour you like. A lot of the paraphernalia we’re presented with as special-needs parents appears as though a unicorn shat on it. If technicolour isn’t your thing, and you’d rather go the way of neutrals, please do (I’ll see you there).

The point is we’ve been presented with a blank canvas and an opportunity to paint outside the lines.

Back on the pages of Bloom, Kelle poses the question: ‘What is it about difference that makes us think it’s not perfect? We set the bar higher and higher and what is it we strive for? And once we reach it – this perfection – what have we achieved? It’s never enough.

Through pain and growth, I’ve come to appreciate – no more than that – I’ve come to love my fence, even though it may be different from the neighbours’.’

It’s a recurring theme among the parents I’ve spoken with – this embracing their coloured fence, even preferring it. Loving what was at first an unwanted and unthinkable family portrait.

One mother even whispered to me over a wine, ‘I actually look at normal families and think, “how boring”.’ (Which, by the way, is a fabulous coping mechanism when dealing with comparison). People don’t aspire to be ‘normal’.

As Rosie King, a writer diagnosed with Asperger’s syndrome, says in her TEDMED talk: ‘Imagine if that was the best compliment you ever received. “Wow, you are really normal”,’ before pointing out that, generally speaking, compliments tend to be more along the lines of ‘You are extraordinary’, ‘You step outside the box’, or ‘You’re amazing’. ‘So if people want to be these things, why are so many people striving to be normal? Why are people pouring their brilliant individual light into a mould?’

Many parents tell me they’ve stopped pining for ‘normal’ and are focused on carving out extraordinary lives with their children. One mother says: ‘We’re all about celebrating uniqueness. Our kids were never going to be typically “normal” whether they had a disability or they didn’t.’

Some appreciate the way their child’s disability gives them permission not to maintain the appearance of a pristine white picket fence. ‘I’m not so wrapped up in my own “perfect” little world,’ says Joanna Avramides, whose daughter Tilly has spastic diplegic cerebral palsy. ‘I don’t have to pretend anymore that everything’s perfect, you know?’

Joanna’s story came to my attention through a feature and photo series on ‘modern mothers’ lifestyle' website The Grace Tales, where she and her three children – eldest daughter, Olive, middle-daughter, Tilly, in pigtails, with her ankle and foot orthotics plus walker, and son, roly-poly little brother Jack – looked right at home among the other impeccably styled mothers and their broods. There they were, smiling, laughing and having what appeared to be a truck-load of fun.

Up until this point all I’d witnessed of parenting a child with disability was what appeared at the top of a Google search (hint: stay the hell away from Google), but here was Jo, making this gig look good.

You can’t be what you can’t see, as the saying goes.

Instagram – in particular, an account called Fifi and Mo – helped Jo to see other parents in a similar spot who are smashing it. Jo herself has an account where you’ll find Tilly rocking a walker at the beach, around the flower market and at Sydney’s chic ‘educational play space’, Nubo.

Five-year-old Dare, who has Down syndrome, also sports some serious swagger on social media. ‘I think people are just afraid of the unknown, and there’s so much that most people don’t know about Down syndrome’, says his mother, Jaynie Johnson, who owns and runs a graphic design studio with her husband, Nathan.

‘You just think of all the things that you do know, which are outdated and aren’t accurate.’ Jaynie’s friend Alana Skibola, whose young son also has Down syndrome, tells me a genetic counsellor handed her a photocopied page from a textbook published in 1987. (Alana was also sent a Down syndrome post-natal pack that included a freaking VHS tape).

After Dare’s arrival – the middle child of Jaynie and Nathan’s three grommets – Nathan searched #downsyndrome on Instagram (related hashtags include #t21, #theluckyfew, #morealikethandifferent and #nothingdownaboutit).

‘And thank gosh,’ says Jaynie. ‘We found this community of people who have children with Down syndrome – young families with young kids who love their lives and celebrate their children.’

Julie Jones of Have Wheelchair Will Travel tells Holly Wainwright why her son’s cerebral palsy diagnosis didn’t stop them from travelling the world. 

Jaynie also points me to the work of Norwegian photographer Bjørn Wad, who photographs people with Down syndrome and their families.

‘The family portraits are meant to represent an alternative narrative of our society’, reads a flyer from one of Bjørn’s exhibitions, ‘to both supplement and be more nuanced than the more traditional depiction of people with Down syndrome.’

Bjørn’s frames capture relatable, imaginable pictures of family life, as do those of New Zealand photographer Rachel Callander, who was inspired by her late daughter, Evie, to create the Super Power Baby Project.

In her photographic art book, alongside beautiful portraits of children with chromosomal and genetic conditions, Rachel features quotes from their parents describing each child’s unique abilities, or ‘super powers’, casting a fresh (and far better-looking) perspective on this kind of life than you’re likely to have previously had.

Don’t get me wrong. These pictures and stories don’t filter out the challenges that come with parenting a child with disability. But they do show different sides to your situation – more flattering, accurate angles – ones you won’t see in god-knows-how-old online stock images.

They show parents doing this thing, in real time, and having active, downright enviable lives. And once you meet these parents – the ones a little further down the track, with a bit of hindsight under their belts – some of them will swear to you, hand on heart, that their child is perfect.

 

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What catches your eye in this photo – my kid’s walking frame, or his smile? In the early weeks and months that followed Arlo’s cerebral palsy diagnosis, I was obsessed with the idea of him walking. He just had to walk. I simply couldn’t fathom any other outcome. Nearly two-and-a-half years on, sure, we’re working on it. But if he can’t walk, that’s okay. I’m much more focused on that smile, and doing all I can to keep it in place. . ???? @eamon_dimmitt . . . . . #thespecialbook #cerebralpalsy #cpkids #specialneedsparent #specialneedskids #specialneedsmum #specialneeds #specialneedsmom #kidswithdisabilities #spreadawareness #raisingawareness #heartwarrior #shouttheirworth #advocate #inclusionmatters #specialneedsmoms #disabilityadvocate #specialneedsadvocate #strongasamother #specialkids #warriormama #enableawareness #thrivemoms #motherhoodrising #honestmotherhood #mamastrong #inclusionmatters #inclusion

A post shared by S P E C I A L (@the_special_book) on Dec 12, 2018 at 12:25pm PST

Hillary Savoie, a New Yorker whose seven-year-old daughter Esmé has a combination of four rare genetic mutations (of PCDH19, SCN8A, TBL1XR1 and MAP3K7 – possibly making her the rarest kid on the planet) tells me as much.

‘Even when she feels like crap, Esmé finds a way to smile and play. And even when I’m a crummy parent in the middle of the night, she laughs at me, or she squeezes her hand in mine.

She is absolutely perfect. She’s the most perfect person I’ve ever met and it is an honour and a privilege to be with her every day – and that’s not a line. I’m supposed to be guiding my kid through life, but that’s not how this is working. This is me trying to be a person who’s worthy of her.’

Perhaps we can have our ‘perfect’ after all. Because it’s circumstances like ours that cut through the crap – the filtered photos and forced smiles – and show us what perfection really is. It’s a feeling. A sense of comfort. The knowledge that everything, at least for the moment, is okay.

In those plentiful, unremarkable hours that make up most of our days, we can be perfectly happy.

This is an edited extract from Special. It has been republished with full permission.

Melanie Dimmitt is a freelance arts, lifestyle and business journalist living in Sydney. She’s written for titles such as The Age, The Sydney Morning Herald, Collective Hub magazine, Mama Disrupt magazine, Mindful Parenting magazine and Broadsheet. Her debut book, Special: antidotes to the obsessions that come with a child's disability, is published by Ventura Press. You can see more from Special on Instagram.