Eyes wide shut

Amelia ‘papping’ the Pa-parazzi (get it)

WHEN I look at my daughter Amelia, I see lots of things. I see a wonderfully healthy, milky-skinned towhead with dark, dark eyes.

My eyes rest on her all-terrain body some days and I conjure up images of her in a field, pausing from her work to glance at the sky, the sun, like a stocky Russian peasant, built to withstand the elements.

Come rain, hail or shine, Amelia was made differently to most people, but man was she made to last.

Through my eyes, the most subjective of prisms, she is the most beautiful child I have ever seen. If I look at her for an hour, a month, a year, there will never be enough time to really see her.

I love to look at Amelia’s blonde hair falling in rolling, lazy waves down her back. Tucked behind her ears, some days it’s easier to see that she is wearing hearing aids. To see the physical sign of an internal part of her that doesn’t work the way it should.

Her autism is not so obvious to the naked eye. It’s not etched on her skin or reflected in some mechanical appendage that helps her to think or feel. Amelia doesn’t wear a t-shirt reclaiming the word ‘Aspie’.

You can’t see her autism in obvious ways, but I always know it’s there. I see it in her face sometimes, when her gaze drops below mine, and try as I might to regain her attention, she’s quietly slipped off to some interior room, far from me and my ever-prying eyes.

No matter what the signs – violent temper, crushing anxiety, rampant hoarding – I see autism but I still see Amelia. I never lose sight of her, working so hard to push her little barrow uphill. I see all that she is and I feel I truly know her. I know her and I understand.

Amelia has many people in her life who look past her ‘special needs’ and see only what is genuinely special. What is unique about her. The madcap sense of fun, the tenderness, the infectious lust for life.

What they see is mirrored in my own eyes and in my heart. That mirroring gives me strength and so much joy.

Yet now and then in our travels I am forced to view Amelia the way that other people sometimes do and it makes me turn my face away. I can’t bear the sting of their unforgiving eyes boring holes of judgement into her. Into me.

When she is suddenly, inexplicably loud or clumsy or different – incongruous – in a public space, I feel strangers’ eyes flick up and cast their reductive light over her. Mouths curl up in a mute grimace of distaste. I read their looks and expressions and interpret the words left unsaid.

‘Oh, what a weird child. Look at the naughty child. What on earth is wrong with that child?’

And who am I? It’s simple: I’m the bad parent.

I hate those staring, ignorant eyes because for a second I step outside myself and I judge Amelia too. In that moment I see only her flaws, the things that cannot be contained or controlled. And it hurts my heart.

My inner voice pleads with her, ‘Please won’t you just be calm? Why can’t you walk properly? Stop yelling, just stop it!’

‘Why can’t you just be normal.’

Then there are the people who don’t see Amelia at all, who have trained themselves not to see what is different about her and to try to understand. They focus their eyes on the wall above her head or on the easy going child instead.

They ignore her and I despise them too.

Because they looked at Amelia, but they did not really see her. They saw only gaps and lack and the spaces in-between where a different child might be. And they decided things about her that are only a tiny fraction of who she is. Who she will grow up to be.

I’m not blind to the hardships looming up behind Amelia like a shadow she can’t shake. I know she is sometimes rough and strange and hard to take. I know that because I see how being around Amelia makes some people feel: uncomfortable, nervous, frustrated.

It’s written in their eyes.

But I can’t let those looks and the thoughts that sit behind them slip under my guard too much. They strike me in my nerve centre, and I absorb little shocks and bouts of pain, but they do not defeat me. They could never.

For me, there is always great solace to be found in looking up and seeing Amelia again, maybe running down a path to meet me after time spent apart. She throws her glorious head back and yells my name at the sky and I see only beauty and all that is right.

There are no shadows here, save the ones cast by the sun, warming the head of my sweet peasant girl with her golden hair and those dark, dark, eyes.

Awake is the new sleep

Sleeping soundly with stacks of ‘stuff’.

IT’S DAWN, barely a trace of sunshine coming through the windows, and already I can hear her crashing around in her room.

The Kraken, also known as my six-year-old daughter Amelia, has awoken.

I know this because I can hear her clumsy, elephant-like footfalls pounding into the floorboards. Amelia is awake and the whole world must know it.

It would be churlish to complain because she is deaf and so has no earthly idea how loud she is, as she moves around gathering her numerous comfort items from the bed for transportation into the lounge room.

This is the routine for her, everyday, my girl who hears little of note without hearing aids and is well and truly on the autism spectrum.

Amelia uses various collective nouns to describe her personal treasures. They are her ‘things’, or sometimes, her ‘stuff’.

“Where is my stuff Mummy? I need my THINGS!”

I always know where her stuff is because it is never far from her side. Amelia burrows these objects into her bed covers at night and I have to creep in after lights out to extract pencils from her hair and uncurl sweaty fingers from straws, tape, glue-sticks. The lot.

For a young child with autism, the ‘things’ have a deep meaning that is mostly beyond our reach. But what we know for sure is that they are absolutely vital to our little magpie’s sense of security, her sense of self.

Amelia clings to these things like a lifeline to some magical source of strength and energy known only to her. With them, she is safe.

And so, each morning, this curious set of bits and bobs is dragged from her room and deposited next to her on the couch. Amelia is now ready at 5am, or 6 if we’re fortunate, to kick off her day.

It’s then that I feel her presence in the doorway to our room. She hovers there uncertainly, watching for movement, for signs of waking life.

I resist for a minute but I can’t help but lift my weary arm to offer her a tiny wave – words cannot travel the distance to my beautiful deaf child but one gesture shows her the way is clear to approach.

And with this green light Amelia runs to my bedside, full pelt, to grasp my hand and throw her body across mine.

It’s easily my favourite time of day, this part when our bodies are so close and her face turns to my cheek to plant big, passionate smooches there. And if I’m very lucky, she might reach up to softly stroke my face with her hand.

Her sometimes-rough hands become gentle in the morning light.

I am barely awake but the smell of her, the feel of her, is everything to me in that moment.

Amelia is up and now so am I, and no matter what the hour, no matter how sleepless the night, and no matter how many ‘things’ I’ll be carting around for the rest of the day, in this perfect moment my heart is filled only with happiness.

[I wrote this piece yesterday after a wonderful day spent in a Gunnas Writing Masterclass with the incomparable Catherine Deveny. The task was to send her a piece written between 10am and 10pm on the day. ‘But how? I’m going straight out to dinner and to see a show. I won’t be able to do it’. But no excuses would do. So I texted my husband the simple words…’Bring your laptop’. Later, parked in our car on a city street, I sat with the laptop on my knee and frantically tapped out this piece from the notes I’d scrawled in the masterclass. I had to do it – would never forgive myself if I didn’t – and so I did. I emailed it to Catherine, typos and all, and felt a great sense of satisfaction. The feedback and support from Catherine the next day was absolutely thrilling and so that mad writing session in my car felt even more worthwhile. It was such a great experience that I’m sure any aspiring writer would enjoy. Plus, Catherine wears amazing shoes with little musical notes engraved on the soles. So there’s that too.]