I start with the fat orange pill, snapping it in two with the tip of a thumbnail and dropping its halves into the worn, unadvisedly dishwashed plastic cup. Next is the tiny white pill – only a quarter, always jagged and uneven, but it will do. Profanities as a grain or two hit the floor. The back of a teaspoon grinds both pills to dust. 

We’re not done yet. 

Now for the small white capsule, the careful twist of its tubular shells, the spilling of its powder – always a little lost to the counter. Then the silver sachet of yellow granules, torn open, tipped over. And a final flourish – two drops of ‘sunshine’ from a brown glass bottle marked Vitamin D3. 

Serve over cereal steeped in boiled water, a dollop of lavish – and crucially, thick – yogurt and there you have it. My four-year-old son’s breakfast. A heavily medicated mix that will see him through – hopefully, seizure-free – until lunch. 

I did not expect motherhood to make an apothecary of me. Nor did I expect to gain vicarious degrees in physio, occupational and speech therapy. Or learn the meaning of words like dystonia, hypertonia and aspiration – of acronyms like EEG, GMFC and SEN. 

Like every other healthy set of parents-to-be, poised for the next step of our so-called normal lives, my partner and I had banked on your stock-standard, run of the mill, ‘nothing to see here’, baby. 

“We did not expect his heart to stop beating in the birthing suite. Or the frantic rescue mission into my uterus that would save him, but leave his brain severely damaged.”

‘We’ll have to wait and see what this means’, said the doctors. ‘He’ll be fine’, we insisted. Six months later, our son, Arlo, was diagnosed with quadriplegic cerebral palsy. 

Now four and a half, with epilepsy added to his medically complex credentials, Arlo is a non-mobile, non-verbal little guy who needs a great deal of assistance to move, eat, drink and participate in pretty much everything. He’s also smart, sensitive and thoughtful with a zest for life that could rival that of the purple, blue, red and yellow Wiggles combined.

He’s everything to me. More than I could ever have hoped for. But in the early weeks and months that followed his diagnosis, the prospect that he might never walk or talk – and a future clouded with uncertainty – were hard pills to swallow. 

As Arlo’s medical appointments mounted, questions started looping through my mind. Why has this happened to me? Will I ever be happy again? Will Arlo be happy? Will I ever stop comparing my child to typical children? How will my relationship survive this? Should I have another baby? Will I ever be able to work again?

I wanted answers, but I wasn’t ready for support groups and ‘special-needs parenting’ forums. I struggled to even say the word ‘disabled’ in relation to my son ’til he was spilling out of his irksomely branded ‘crawler’ nappies (he’s now in ‘walker’ nappies and can’t so much as roll over). So I cheated, put my journalistic skills to use and interviewed dozens of parents in the name of research.

I talked to parents living all over the world, raising kids with all kinds of disabilities, and asked them how they coped, and didn’t cope, as a newly appointed ‘special-needs parent’. I asked them to share the tactics they used to combat negative thinking. I asked them to make me feel better, to give me some hope – a promise of future happiness. And I asked them to save me some time by distilling their years of learning into actionable coping strategies and advice.

I gathered these insights and stories – along with some advice from mental health professionals, for good measure – into something I wish I’d had when Arlo was diagnosed. A book called Special: antidotes to the obsessions that come with a child’s disability. A book that, as one reviewer put it, “airs a parent’s most guilt-riddled thoughts and then turns them on their head”.

 

 

The process of researching and writing Special taught me a lot. How to navigate my feelings. How to get comfortable with uncertainty. How to not see my child as broken. To stop fearing ‘the future’ – one I’d fabricated, like some kind of Frankenstein’s monster, from my pre-existing prejudices, ill-informed assumptions and whatever Google decided to cough up on any given day.

Fear was something every parent I interviewed spoke about. When they first realized their life wouldn’t be following the blueprint, they were frightened. They couldn’t see any light at the end of the tunnel. But they told me not to be afraid. A mother whose twin boys have profound disability shared with me: “I’m probably happier today than I’ve ever been, and all my worst fears have come 100 percent true.”

An antidote to my obsessing over the future was mindfulness – the art of staying in the moment, and not letting my thoughts run rampant into what might, or might not, be. Parenthood has shown me that things don’t always pan out like we expect. Sometimes things that ‘only happen to other people’ happen to you. But that’s okay. Because you can’t know how you’ll feel about things, should they happen to you, in any case. 

I thought having a child with severe disability would be a bad thing. Spoiler alert: it’s not. It can be enormously challenging and, sometimes, feel supremely unfair. It’s also heart-burstlingly rewarding, perspective-changing and life affirming. But a lot of the time it’s just plain vanilla. Even the most extraordinary of circumstances come to feel ordinary. 

Another mother, raising a daughter with a similar diagnosis to Arlo, told me she “lives with one foot in the mystery and the other in the moment”. I try to do the same. Sitting down to breakfast – which, like all of Arlo’s meals, requires very attentive spoon-feeding – I get lost in his eyes. We share our little in-jokes, enjoy his favorite songs and snigger at his two-year-old sister as she swipes her toast clear off the table. 

It’s not the life I expected, but it’s not any better or worse than I’d imagined. Just different, and filled with unexpected surprises.

 

 

Special: antidotes to the obsessions that come with a child’s disability

is available to purchase via Amazon and Barnes & Noble.   

 

 

 

Continue exploring

 

• A growing number of American families are trying to take the COVID-19 educational crisis into their hands by coming up with their own learning solutions…
• Amy Webb, the activist and author behind ‘This Little Miggy’ sheds refreshing light on the reality of raising a child with disability.