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.

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6 thoughts on “Eyes wide shut

  1. This is so beautifully written and your words made me cry. My boy is also deaf and autistic and these thoughts go through my mind every day. We are made to feel our children are “broken” but I can’t help feeling our society is broken for not accepting these children the way they are.

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