On finding solace in the dark

indexPEOPLE OFTEN ask me what autism is, or what it means to have a young child who is on the spectrum.

It’s not an easy thing to articulate. All I can reach for are the behaviours that seem to spring from that enigmatic well.

If you asked me that question today, I would tell you that parenting a child like my daughter Amelia is still much like being on a rollercoaster.

The carriage holding your family might hover on an up-swing for months and you feel that pleasurable excitement of progress in the pit of your stomach.

You yell into the oncoming wind: ‘We’re making it, we’re really getting somewhere! Upwards and onwards!”

But today, like every day for the past six weeks or so, we’re not getting very far. We’re deep at the bottom of a trough and the wheels aren’t moving anymore.

I think they disintegrated on the way down some invisible ramp and now we’re sliding backwards.

In this trough we are locked in yet another lengthy battle of wills with our daughter. It’s the Hundred Years War all over again. We might have taken Agincourt but that doesn’t mean jack in the long run.

Every day is filled with screaming fits, physical outbursts, nocturnal wanderings and ever more screaming.

We have been here so many times before, but my god it never gets easier. We’re nearly seven years in and some days I wonder how much longer I can hold on.

Last night around dinner time when the screaming began for the fourth time, I walked silently into my room and crawled onto my bed in the dark to escape my own child. In that dark I felt no comfort but at least the space was quiet and it was mine.

The dark is the right place for me in those moments. I can’t see myself (or her) anymore, I can only hear the sound of my breathing.

The dark is heavy and that is what I want. To allow the blackest thoughts in my head to wash over me as I lie there. There’s no use fighting them, pounding as they are to get out. Might as well set them free.

Lying on the bed I curl into a ball and weep. I cry because I am so tired I don’t really know how it is that I can function in the day. And because I feel a momentary yet powerful sense of defeat.

In the shadows I know only that I am losing this battle – not the battle to beat Amelia at this relentless ‘game’. Nobody’s playing around here. 

No, I am failing to help her to handle the frustrations that she cannot yet manage on her own.

I hear taunting voices in that dark room too.

They say: “There’s nothing wrong with Amelia. She’s only like this because you are a bad parent.” (Yes, in my head I italicise for emphasis.)

To those voices I say: “Come into the dark with me and see how long you’d last. You know nothing, cruel, hateful voices. Get away from me and never come back.”

Then suddenly into the dark comes my real, live daughter, the one I’m taking refuge from. She puts a hand onto my back and holds it there. I reach over my shoulder to touch her, to tell her she is welcome there with me.

Amelia lies down next to me and curls her arm around my neck. The dark brings no true comfort, but her affection does. She kisses my cheek softly and presses herself into me. The darkness shifts a little and loses something of its heaviness.

I’m no superhuman and I’m not a machine either. The more confronting behaviours that define Amelia’s autism naturally penetrate beyond the surface of my skin.

My resilience is not bottomless. On such little sleep over so many weeks I can feel myself start to fray at the edges. I forget where I’m supposed to be going. I lose my way.

In this state it’s so hard to know what to do to. Sometimes I want to run so far away that no-one will ever find me. But I only ever get as far as that room, where only the dark will do.

And it is here, where all is finally, blessedly quiet that Amelia reaches out and brings me safely back to myself. With empathy and love we hold each other in the dark and start again, as we must, every time.

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Thursday afternoon fever

“The main challenge I’ve had is dealing with society’s belief that since deaf people can’t hear, they can’t dance. What people forget or do not yet know is that we all hear with our bodies before the sound enters our ears. This is not just through vibration but also through instinct and impulse.” – Jo Dunbar, deaf choreographer and dancer.

Leave nothing behind.

Leave nothing behind.

WHO SAID deaf kids can’t dance? Or respond to music, the rhythm in the air, their feet, or in their hearts?

Not me. Not after I saw my sassy six-year-old Amelia and her fellow classmates bring their best jazz hands and a whole lot of funk (is my age showing?) to an afternoon dance concert worth remembering. For like, ever.

We knew Amelia had been working with Jo Dunbar from Deaf Can Dance every week. Some nights she’d come home and try out some sweet new freestyle moves on the lounge room rug and I felt sure she must have been watching repeats of Breakdance (no judgement) as part of her training.

She’s no private dancer. No, she demands a captive parental audience, and as usual when her rockin’ recital is done we are instructed to clap as she bows solemnly like the most respectable English gentleman in the county.

We were eager to see how this confident home practice would translate to the bright lights of the school stage. Because every event like this, no matter how small, brings with it a new sense of who our daughter is.

Standing in front of a crowd I see more of Amelia’s true self than when she is in repose or playing by herself in the garden. The shifting expression on her face, the way she moves her hands, that tiny twitch of her bottom lip that signals shyness and something else. Something far more determined.

Like sardines, we packed into a small multipurpose room at the school; sweaty parents stacked on top of each other like a human game of Jenga, jostling for the perfect view.

Jo introduced her drumming accompanist, Koffi Toudji – a veritable man mountain with incredible command of his instrument and the 50-odd children in the room. One wave of his giant hand was enough to magnetically draw the dancers from one side of the stage to the other.

Then we watched, as mini troupes of well-rehearsed kids with painted faces twirled onto the stage, guided by Jo’s conducting hands and the deep, resonant boom of Koffi’s drum. It was a wonderfully rich sound that seemed like it was emanating from inside the walls.

We felt it reverberate through our own bodies, and saw its impact on the smaller bodies dancing on stage. The beat was powerful and intoxicating, pounding in my chest alongside my heart doing the rest.

If my smile had stretched any wider it might have fallen off my face.

And the dancers. They came in all shapes, sizes and abilities, but they held nothing back. Deafness was no barrier to their instinctive feeling for the music, nor their sense of rhythmic movement in response to it.

If one performer lost their way, another (or a patient teacher) would quickly gather them back into a carefully choreographed circle or tap them with a reminder of what to do. They danced with passion and with pride, in themselves and each other.

Warrior #1

Warrior #1

Finally it was Amelia’s turn. I couldn’t get a clear view of her, but I did see her little hips swinging with great verve and her intense concentration as she executed the steps she’d been practicing for weeks.

Sometimes she would get lost in her search for our faces in the crowd, but the distraction was only fleeting. She quickly got her groove back.

Then it was time for Amelia to bang on her own little bongo and I saw the raw delight on her face when it was time to pause and shout a barbaric yawp at the rafters. She looked like a warrior and she sounded like one too.

My husband and I clutched each other’s hands and laughed loudly with pleasure at how free Amelia was, how open and entirely herself. It felt like we were stealing a glimpse of something she didn’t mean for us to see.

At the close of her last performance, Amelia stood and did her uniquely refined doff and bow. She held no feathered hat in her hand but her gesture was so expressive I imagined I saw its soft, wide brim brush the floor.

She danced with sheer joy to the thunderous beat of Koffi’s drum, and more joyfully still, to the one you can’t see; the one that beats inside her, ever constant and true.