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.

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.

Remembrance of things past

Wonderful childhood days (Malaya, 1956; Dad at far left, his father at centre)

Wonderful childhood days (Malaya, 1956; Dad at far left, his father at centre)

A FEW months ago I was in the car with my parents when my Dad started telling me a story from his adolescence that I hadn’t heard before.

I thought I knew all of his stories, but that day I discovered there are some tales not so easily told, even some 50 years after they happened.

Even my Mum, who’s known him her whole life, had only learned about it the year before.

If you flew a helicopter over the landscape of my Dad’s teenage years, it would look a bit like a war zone in the aftermath of a most terrible battle.

Smoke rising from shattered structures once recognisable as buildings. Emptiness. Despair.

He grew up in a corner terrace house facing Windy Hill in Essendon, with his loving grandparents, parents and two siblings. By the time he was 14 years old, nearly everybody was gone. Dead, dying, disappeared, lost.

The disintegration of his family unit was startlingly rapid, most of it vanishing quickly in the space of only two years.

By the summer of 1965, my Dad and his younger brother were alone in that big terrace house once filled with the sounds of familiar voices and adult footsteps on the stairs.

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Dad surrounded by his grandparents and father (1951)

Within a few weeks they would be turned out of this home, but for a short time it was still theirs. An anchor to a simple family life already past, never to return.

Around this time, my Dad remembers a family friend would visit most days, drink beer and chat to him. He was an Army man like my grandfather and Dad began to regard this man as a father figure in the absence of all others who might fit the bill.

Dad told me that his family had a dog then who had become pregnant and had given birth to three tiny pups.

My Dad has a tough exterior but he’s actually a massive softy when it comes to animals. I’ve seen him hand-feeding magpies and worrying over the welfare of their young.

He watched over his little canine family too, taking special care of them. I can see him now, his sweet face hovering over their sleeping spot out the back of the house. He would have treasured them and wanted to make sure they were alright.

But they weren’t going to be alright. Not in this story, pulled from the wreckage of his teenage years. I couldn’t see his face as he told it but there was something in the tone of his voice that made me sit up straight.

I leaned in despite myself. I didn’t want to hear anymore but it wasn’t for me to stop him in the telling.

The family friend was visiting late one night. He went out to use the outdoor loo and came back with a story of his own.

He’d killed the pups, he told my Dad roughly. With the back of an axe. They had distemper, he said.

I’d known something bad was coming but hearing the worst thing is different to merely imagining it. Hearing makes it real and you can’t wash it away no matter how hard you might wish it.

My beautiful grandparents (1949, the year they were married)

My beautiful grandparents (1949, the year they were married)

My Dad can still remember reeling in shock and horror as he took in this news. That this man who he’d begun to trust and rely on should commit such an act of senseless violence was shattering.

He didn’t think that his pups were sick at all. Killing them was about something else. Something darker inside the man’s mind.

Looking back, Dad can see that during this period he was trying in small ways to survive the things that were happening to him. Going to school. Playing footy and cricket. Tending to the newborn animals.

But stripped of the protective forces of his family, he was as vulnerable to the impact of an axe-blow as those poor, defenseless pups. Who could he tell anyway? There was no one left to listen.

And we can’t ask the man why he did it, no matter how often my Dad has tried to understand; the dead take their secrets to the grave with them. Let them stay there.

Not for the first time, I wanted to reach across time and rescue that lonely, young boy. Take all of his pain away. I can’t fathom it, what his life must have been like then.

I wish that I’d been there to protect him, to help him somehow. But the past is the past and Dad knows and accepts that better than anyone.

Dad in 1961.

Dad in 1961

I’ve asked him so many times why he isn’t more sad or angry about this time and he shrugs enigmatically as though the movement could cast off all the hurt he experienced as a boy.

I project my own pain for the boy he was onto the man he is today. But it’s not my story to shape, I’m just passing it on with his blessing.

My Dad is passionate about family history now, collecting and cataloguing hundreds of wonderful ‘lost’ images for all the family to see. They’re a joy to him and a gift to us, so we can remember his people as they were and connect with his life before and after the reckoning of 1963-65.

It’s a more recent project for him, starting only in the last few years. I think he uses the pictures to reconstruct the life he once had and make it whole again.

The happy times, when all of the people he loved were still together and he could just be a boy who loved aeroplanes and playing sport and had his beautiful family wrapped around him, holding him tight.

* For my brave, wonderful Dad, thank you for trusting me to write about your life. I love you.

Carrying the mother load

Kicking back and growing up

THIS WEEK in my house we will celebrate in our own small, quiet way that modern event known as Mother’s Day.

For us it still feels like a new tradition and this year will mark the sixth time I will be lucky enough to be in the box seat for a hand-made card from my daughter Amelia, followed by burnt toast served on a large hard-back book (Bowie: Album by Album) in bed.

Oh, the luxury.

I get that it’s a super commercialised ‘holiday’ and that the marketing of Mum-gifts is so narrow in its view that it can only imagine one uber-domesticated, goddessy-type mother.

The reality of my childhood is that if you were going to buy power tools for anyone it most likely would have been my Mum (sorry, Dad).

I can’t get overly energised about public perspectives on what is actually a very private role. It belongs to no-one except the woman who is doing the mothering and the child or children who share that relationship with her.

Mother’s Day is about business; but my sense of motherhood is nobody’s ‘business’ but mine.

It’s such a complex thing to me, being a mother. It has meant so many different things over time, I can hardly begin to unthread one from another. It’s a tangle of feelings, thoughts and experiences. And so many ups and downs.

Even before Amelia was born, I felt strangely detached from the idea of motherhood. Her conception occurred in a medical laboratory; her little egg was extracted from my body while I was unconscious, fertilised in a test tube. My husband and I didn’t even need to be in the same room for that.

I was technically present, but I felt far, far away from myself, like waving to a familiar shape on the horizon who doesn’t see you.

Pregnancy helped to repair that detached part of me, at least back then. It fused splintered bits of my self back onto the bone. Whatever interventions I endured before and after Amelia’s birth, carrying her inside me drew me closer to her, to the nurturing experience of almost-motherhood.

My body was not just some broken machine that required drugs and procedures to work like it was meant to. It was life-giving, sustaining another person’s growth. Every kick, lurch, forward tumble (what the hell was I growing in there, an acrobat?) inside me was a sign that my body was finally doing its job.

I could pause my lifelong hatred of it and welcome its changes for the first time.

My take on childbirth is mostly a pragmatic one. It’s a necessary means to an end. Of course there were more medical interventions, more body-numbing drugs, incisions. I could not escape them, but they did not sever me from the powerful emotions I felt upon seeing Amelia for the first time.

And she was perfect. She really was. My January girl, Amelia Isobel. Named in part for a forgotten woman we wanted to remember through the gift of our daughter.

The distance we had travelled to get there, to reach each other, was long and hard. Yet we had made it and contentment washed over me like warm water moving downstream.

It turned out that the perfection we swiftly projected onto Amelia was illusory. Nobody looks at their baby and sees anything other than all that is right and true.

But there were shadows all around. Third parties. Autism was like another child born alongside Amelia, standing between us. It held out its small hands and shouted, “Stay away from me!” It kicked and railed and screamed and it never let up.

Deafness too. Before we knew it was there, deafness was another character vying for attention in an already confined family space. The cost of not knowing that its presence had stood in Amelia’s way for two years, causing us to wonder why our child felt so remote, remains with me.

That grief grows smaller but it never leaves.

Amelia’s unique set of challenges have tested to the hilt the ways I see myself as a mother. What it means to love a child who did not hear my voice after she was born and who could not really bear for me to hold her close. Who sometimes seemed to reject my very existence in relation to her.

How can I be a mother if I can’t comfort my own child? Show her my love through the warmth of my body, the song in my voice?

The years have been challenging and arduous. I will not deny that for a number of those years I have felt like the living embodiment of The Wreck of the Hesperus; a walking tale of woe.

I have been a mother in name, it is true, and I bear the massive responsibility of guiding a very vulnerable person through the mists, onto dry land. But it hasn’t really penetrated beneath my skin, my sense of really being Amelia’s mother.

In our darkest years, mothering her meant learning and then teaching her how to sign before she could talk. I worked hard to give her language and access to the world, painstakingly, word by word.

I watched her tear herself and the house apart in the midst of yet another distressing meltdown. I tried everything and achieved little save hours and hours of sobbing. For us both.

We couldn’t go on outings or share in the most basic things like a walk together for the longest time. I would watch ‘normal’ mothers on the street from my car, talking and chatting to their little ones. So effortless, it seemed. I thought my heart might break in two.

For me motherhood exists in those incidental spaces where small exchanges of love seem possible. Long, soft cuddles on the couch, whispered secrets at the park, tears wiped away with the palm of my hand. All are welcome.

They’re spontaneous, shared events of connection and they combine to build into a bigger picture of mother-daughter bonding.

It is simply a fact of Amelia’s early life and the severity of her challenges then that she couldn’t bond with me in traditional ways. I understand now that she did love me and need me, just not in the ways I had expected.

She couldn’t show me and I could not see it or feel it, but her love was there, as was mine. It just took us some time to see each other properly.

In my own narrow view of motherhood I had set us both up for failure. I feel very sorry for the pain I inflicted on myself then and the distance that created between she and I. I held her in my mind as though on a string, floating away from me, when I should have tethered her closer still.

Because now she is six and though I feel like I have waited for an eternity, Amelia is really ready to love me, in her own, quirky way. I’m doubling down and keeping her all for myself.

Daily, hourly, she throws herself with gusto into my arms and says earnestly, “I love you Mummy, you’re my best friend in the whole wide world”. I am now a mother who feels ten feet tall. A world beater; life conqueror.

I am learning to trust in these moments, rather than unpack them endlessly or worry that my girl is faking it just for me.

You know he's wishing that was a fried pork dumpling

You know he’s wishing that was a fried pork dumpling

On Sunday we ventured out for lunch in a rare attempt at family ‘normality’ and it was one of our most wonderful days so far. Top five, I reckon. We ate dumplings like Friar Tuck would have if he’d been lucky enough to have a yum cha local to him in Sherwood Forest.

We ate together, we laughed. Amelia sat happily and I actually relaxed. We left and went in search of ice-cream; there was no hurry, we could take our sweet time. Amelia sat patiently on a stool next to me while we waited for her Dad to purchase a messy chocolate concoction in a cup.

And then we walked to the lights on the corner to cross to our car. I stopped and leaned against the light pole. In front of me, my dear little person leaned her body back into mine.

It was a subtle movement, but the pressure of Amelia resting on me, the warmth, was a heady mixture. I took a risk then. I reached up my right hand to stroke her beautiful, blonde hair.

She let me, so I grew bolder. I ran my hands through it, letting the strands fall down her back like it was the most glorious silk in the world. As a mother I’ve only ever wanted to be able to show such tenderness to my child.

She didn’t pull away and I didn’t breathe.

The extravagance of being able to have this contact without rebuke was everything to me in that moment. I looked up at the people in cars idling on the street and thought “I wonder if they look at me and see a mother?” Because that’s how I felt right then. Like a real mother.

It’s a new feeling, like a shiny coin I’m turning over and over in my hand, marvelling at the shapes, the grooves I can see in the light. I know I will feel it again and more often and that thought is more exciting than a thousand Christmases at once.

Yesterday, Amelia jumped off the bus from school clutching a plastic bag behind her back. Ah, the Mother’s Day stall at school. She’d spent the $5 I gave her that morning and was clearly pumped about her acquisition.

She ran swiftly ahead of me to hide my present under her bed. Last year she would have just shown me, but she’s learning how to harbour secrets and cherish surprises.

And I don’t care if that bag has a tea cosy in it, a weird tissue box holder, or a garishly decorated mug to add to the 400 others in our cupboard.

It’s Mother’s Day on Sunday and I want my card, my burnt toast and whatever special prize my beloved daughter thought to choose just for me, her mother and her best friend in the whole wide world.

Mr Marbles’ Midnight Run

Do I need a reason?

Do I need a reason?

THERE ARE very few sure things in this life. The rising of the sun in the east. The perfection of Jon Snow’s hair, swept back by the wind above the Wall. Death. Taxes. Did I mention Jon Snow?

I would add another certainty to this short list – the inevitable nocturnal stirrings of my unsettled six-year-old, Amelia.

She has forgotten how to sleep and we can’t remember when we ever did.

The pitter-patter of tiny feet long wished for in our pre-parental phase of life has been replaced by a less welcome sound.

That is, the inelegant, stamping footfalls of our daughter, risen from her bed in the darkest hours of the night, running through the house.

Hell-bent on fun and mischief. Foraging for food. Maternal comfort. Her iPad. Anything except blessed sleep.

I have heard the Chimes at Midnight, at 2am, at 4am, and they doth toll for ME.

My husband and I have grown accustomed to sleeping with our eyes barely closed, our ears trained on the corridor space outside our room.

Because we know she’s coming. It might not be tonight but it will be very soon. Two good nights in a row are a harbinger of a full week of horrifying wakefulness to follow.

It’s like that great line from Platoon, when King says, “Somewhere out there is a beast and he hungry tonight”. I don’t mean to compare my first and only child to the Viet Cong, but when we’re cowering in our bed/bunker, the helmet would seem to fit.

I have learned from other parents of autistic children that this night waking practice is not uncommon. And it can be long-lasting. One child I know of is twelve and she still wakes constantly through night, searching for snacks and televisual stimulation.

Twelve? I can’t do another six years of this and hold on to my sanity. As it stands, I sometimes can’t remember my own name.

But what disturbs Amelia’s sleep? Why can’t she remain settled, secure inside the soft, thick blankets I wrap around her to keep her warm?

Sometimes I’m certain it’s because she is anxious, terrified even. She is deaf and at night I wonder if the shadows don’t crowd in on her, and frighten her down to her cotton socks. How would I even know?

One night Amelia told me that her curtains were whispering to her. No, they were singing. When she said that I looked at the gentle, green folds of her drapes and thought, if that’s true then I’m out of here too.

Her imagination must be powerful because she can’t hear anything remotely like a whisper, or a curtain-song.

The night is dark and full of terrors, as Melisandre from Game of Thrones, would say. Everybody run.

And yet another part of me suspects that Amelia is foxing. For her the night is merely an extension of the day. Just another moment in time to fit in the things she loves to do. Like eat, draw, create and laugh at her funny little TV shows.

If I didn’t know better, I’d suspect she’s only pretending to sleep while she waits for us to be out of the picture and she can have her run of the big house for a few hours.

Recently Amelia started hunting for audio-visual devices at night until we locked them all away. We have discovered her sitting up in her bed at midnight, surrounded by a menagerie of toys, drawing items, snacks and her iPad propped happily on her knees.

Her defiant face in response to her Dad’s appearance in the doorway says, “What’s the problem, mate, I’ve got this totally sorted. Shut the door on your way out”.

Mr Marbles is on the move.

Mr Marbles is on the move.

We’ve taken to calling her ‘Mr Marbles’. My husband started it; it’s a Seinfeld thing. The wonderful ‘Chicken Roaster’ episode when Jerry has to cohabitate in Kramer’s apartment with a creepy (and of course as it belongs to Kramer, this qualifier is redundant) ventriloquist’s doll called Mr Marbles.

Jerry becomes certain that the doll is going to come to life in the middle of the night and kill him. Despite Kramer’s assurances, Jerry sees a doll-shaped shadow move past him on the wall, then hears rapid footsteps.

Holding the blanket up to his chin Jerry whispers in terror, “Hello? Is somebody there? Mr Marbles?”

This is where we’re at now. Lying in wait for our very own, albeit much cuter, Mr Marbles to hop out of bed and come running down the hall. We clutch the bed covers in mock horror, but this pantomime belies our true fear. Of never having a good night’s sleep again.

We amuse ourselves so that we can cope with the regular disruptions, the impact of the deprivation on our lives. The nights when our agreed ‘contract’ with Amelia is broken yet again and she screams for hours for comfort and attention. It’s harrowing.

It’s hard to be strong at 3.30am when you’ve already been awoken at 11.30pm and you’re trying to hold firm to the rules about only going in to see her for a short amount of time and then not at all after that.

I have allowed her to have things I shouldn’t in those moments. Like access to our bed. Or her iPad, just for a few minutes (in reality hours), so that I can rest my head once more.

But she won’t learn if we continue to bend to her mighty will. If she has forgotten how to settle herself, how to stay in her room, then we have to remind her. Help her to remember what to do. How to rest.

During the day, when we’re all in a reasonable mood, I talk to her about things she can do when she’s awake in the night. She can read or draw in her bed. Cuddle her bears. Go to the toilet. Close her door to feel safe. I will come if she needs me but only for ten minutes. After that she is on her own.

Even if she screams and tears the house down and the neighbours wonder whether they need to involve the DHS.

So far we are sticking to our agreement, but it’s early days in yet another rebooted strategy and Amelia is always looking for loopholes. A weakness in the plan. In us.

This morning I heard her wake up at 4.30am, earlier than her usual 5am rooster call. She rarely, if ever, has made it past 6am in her life. She knows she is not allowed to get up until 5 and then she can have her run of the house.

Today she worked out how to manually accelerate her alarm clock so that the time was ‘just right’ in the fairytale parlance of another mischievous blonde. Her Dad got up to tell her it was too early and she protested passionately, “No, look!”, dragging him to her clock with the revised numbers, the truth written in neon.

We can hardly compete with that, can we?

Amelia running her own show.

Amelia running her own show.

Post five o’clock, Amelia is all business. She makes her own breakfast: Weet-Bix or porridge in the microwave. I used to cringe into my pillow, worrying about her burning the house down. But no, she remembers what I taught her about the safe number of seconds for cooking and is spot on every time.

She puts on her uniform for school. Her socks and shoes. Brushes her hair. Watches her funny shows and laughs. I hear her singing her school friends names over and over in the strange circular loop she so often performs.

Sometimes she visits me, signing into my hand, “Time, time”. It’s a question for me: what time are you getting up, Mummy? I sign twenty or ten (minutes). Whatever will buy me more time to SLEEP.

Listening to these morning sounds, the industry of my resourceful daughter starting her day, I lie in my bed and I smile instead of frowning and thinking about an animated ventriloquist’s doll out to strangle me in the night.

The night. It is dark and full of terrors, for little people and big ones besides. But the day breathes new life into things and it brings hope. We start again with the chime of that microwave as Amelia makes her own breakfast. We are awake together and ready to begin.

Sphinx in the sand

SHE’S A ‘force of nature’ kind of girl. I sometimes can’t tell where the waves start and she ends. I try to call out to her and forget she can’t hear me. My voice travels in her direction until the wind grabs it and carries it away.

She’s not looking at me anyway. It’s deliberate, this ‘not looking, not looking’ game. No one is in charge but her and she’ll pay attention when she bloody well likes.

I only want to make sure that she plays in the sand near our feet. Just over there not all the way away. So I trudge through tiny shards of shells, slowly broken down from ocean to shore, just to reach her.

I talk to her with my hands. Come closer to Mummy and Daddy. You can play how you like, just stay nearby, okay? My child-Sphinx thinks on that for a second and then nods. It’s okay.

She runs behind me to our point on the beach and stays within the invisible flags of our agreement. I watch her, fully-clothed, splashing and laughing in the water, and say to my husband: “She’s ours, but she’s a stranger too, isn’t she? She belongs only to herself”.

He can only agree.

Inclusion is an illusion

IN THE wonderfully acerbic political TV series, The Thick of It, there’s an episode involving a ‘Super Schools Bill’, which proposes the closure of special needs schools across the UK. The hapless cabinet minister who must argue in favour of this integration agenda is Hugh Abbott (Chris Langham).

In this, Hugh is faced with a moral conundrum. He doesn’t agree with the Bill and his senior special advisor, Glenn Cullen (James Smith), has a son who attended a special needs school and flourished there. It’s a personal thing.

Glenn’s catchphrase to sum it all up is simple: ‘Inclusion is an illusion’.

But poor old Hugh doesn’t have the luxury of holding to a thing like principles when it comes to matters of state. Instead, he is forced by the government’s pitbull-esque director of communications, Malcolm Tucker (Peter Capaldi), to support the Bill.

In doing so, Hugh betrays his own beliefs and sells out Glenn and his son by using their personal story to argue for the closure of special needs schools. All in a day’s dirty work for the Secretary of State for Social Affairs and Citizenship.

Inclusion is an illusion. I hadn’t seen this episode for a while but I was suddenly reminded of Glenn’s line last week when I made a foolhardy call to a local activity centre to ask about my six-year-old daughter Amelia joining one of their classes.

Early in the call I volunteered the information, as I always do, that she is deaf and autistic, to be clear about her needs and advance the conversation about how best to include her.

For a minute it all sounded pretty positive. The centre had a separate class for children with ADHD/ASD with an Occupational Therapist on hand for support. Great, I thought, that might be better for Amelia than the regular classes, at least to begin with.

But I was misguided in that momentary feeling of positivity. Amelia, it turns out, would not be eligible to attend either kind of class. The doors I had hoped to open for her swiftly closed, one after another.

About her deafness, I was asked how far background noise would impact on her ability to hear. This was not so the noise could be controlled or limited in some way. It was to point out how the environment would not be ‘appropriate’ for my daughter.

I hurriedly explained that while Amelia is deaf, she wears hearing aids, can speak quite well and follow most instructions and that I wasn’t expecting anyone to be a fluent Auslan interpreter for her. I just wanted them to know that standing near her and making sure she could see the face and hands of people speaking would help her understanding of any directions in the class.

But her deafness turned out to be a deal-breaker for this centre. They could not be convinced that it wasn’t an insurmountable barrier to Amelia’s inclusion in the program.

To me, it’s simply a fact about her that requires a little effort to understand and accommodate. After that, she’ll do the rest because she’s tough and ace and super adaptable.

I know that people don’t often encounter deafness in their day-to-day lives, but there’s an unsettling ignorance that surrounds its understanding in the broader community.

It’s unpleasant to confront this as the parent of a deaf child, but there’s a spectrum of misunderstanding that at its lower levels assumes that it is ‘too hard’ to communicate with a deaf person (so we won’t try).

At the extreme end of this spectrum reside the people who mistakenly believe that deaf people are somehow restricted in their intellectual capacity. ‘You don’t communicate the way I do, so I see you as lesser than me’. Not different, but reduced.

Then I was asked if Amelia attended a mainstream school – the children in the special needs class all do apparently. Well, no, I replied, she goes to a school for deaf children. Then I was asked a theoretical question, about how Amelia might cope in a mainstream school.

How to answer something like that when she has never been schooled in a mainstream environment? That’s when my agitation, which had been like a worrisome tickle at the back of my neck from about the four minute mark of the call, really started to ramp up.

My pulse had quickened and a slight tremble rippled across my arms, my back, like a warning on the surface of my skin.

As the call neared its conclusion, I realised that it didn’t really matter what I said to the person on the end of the line. Every answer I gave presented yet another obstacle to Amelia’s inclusion. Another reason to say ‘no’.

Instead of answering questions about how they might help, I felt as though I had inadvertently participated in a survey about all of my daughter’s faults. It made me feel sick.

This had honestly never happened to me before, so I was more than a little shocked. Most places in my experience will try and meet you and your child somewhere in the middle, somewhere fun and safe where everyone’s needs can be met.

Hamming it up at the St Martin's Youth Arts Centre (2013)

Hamming it up at the St Martin’s Youth Arts Centre (2013)

The St Martin’s Youth Arts Centre invited me to sit down with them for an hour to learn all about Amelia and how their programs could work best to include her fully.

The Northcote Aquatic and Recreation Centre has hired an Auslan interpreter so that deaf kids like mine can access swimming lessons in the only language that’s going to cut it in the pool. They also committed to one-on-one teaching when they were informed of Amelia’s autism.

Just a few cool examples of how NOT to alienate small children and their families.

The person from this centre gave me nothing, no extension of flexibility or sensitivity, just an empty offer of ‘wait-listing’. Our case was lumped casually in the too-hard-basket, and that, as they say, was that. I hung up mid-sentence, mid-sob as the rising lump in my throat betrayed me and echoed its hurt down the line.

But I couldn’t just leave it at that. I was still shaking as I sat down to write the centre a message of ‘feedback’. I’m not interested in disclosing who they are because I just read Jon Ronson’s important book about public shaming and it’s an unedifying road that will serve no grander purpose.

I will, however, share my emails (names redacted) here because I think it’s vital to show the true cost of these negative interactions, where inclusiveness was hoped for but in reality denied to a child with special needs:

Email # 1

Hi there, I called today to see if my 6 year old daughter who is deaf and autistic could come and try some redacted classes with you. She loves to redacted and I thought it would be good for her physical and social development. I was told that she is not eligible for either redacted or the redacted because of her special needs. It is pretty devastating to have your child turned away from fun activities on the basis on her disabilities. It’s great that you have the redacted group for ASD/ADHD kids but apparently my daughter is not eligible because she goes to a special needs school for deaf children. So you cater to special needs kids, just not my kid? I find it hard to understand. Amelia has participated well in programs run by places like St Martin’s and they welcomed her with open arms. She is a lovely, bright girl who has challenges but always benefits from new learning environments. I’m really disappointed – you have no idea how awful these kinds of experiences are for parents like me. Thankfully, most places operate in the true spirit of access and equity. Thanks for taking the time to read this feedback. I hope that other kids might benefit from this, even if my daughter is not welcome at redacted. Sincerely, Melinda

I did receive a quick response, but it was pretty cold and informal, sticking hard to the company line. In summary, they understood how ‘frustrating’ it must be for parents like me, but they just couldn’t accommodate Amelia right now.

Frustrating? Like when you can’t get your car started in the morning or you miss a train? Yeah, I don’t think so. That inadequate word inflamed my anger even further, so after a few hours of grumbling around the house and chewing the inside of my mouth to shreds, I emailed them again:

Email # 2

Hi redacted,

Thanks for responding to my email. I guess I am expressing more than frustration and the reason for that, whatever your company’s capacity to deal with different needs in children, is that you wrote off the idea of Amelia joining in on the basis of very little information. I said ‘deaf’, ‘autistic’ and ‘deaf school’ and after that it didn’t really matter what that means for Amelia in practice and how far she might be able to participate with only a little bit of prompting.

You concluded that her needs were more severe than is currently accommodated within your programs, and I just can’t accept that that’s fair. I would have loved it for instance if you had suggested that I bring her in to meet someone from redacted to get a sense of her, and then decide if she needed to be waitlisted for some other kind of program. The deciding factor of Amelia being in a ‘special school’ – and I’m not sure that a deaf school fits within that category – is a strange one.

There are plenty of ASD kids who attend mainstream schools but they often need at least some in-class support to do that. Amelia goes to school without the need for any extra help at all. She works on the same curriculum as every other child in the state, the main difference is that she learns bilingually, in Auslan and in speech. To me, it makes more sense, and is far more equitable, to assess the actual needs themselves, not which school system has been chosen by parents as the most appropriate for that child for a whole range of reasons.

Obviously, I wish that you had handled my call with a bit more of an open mind and frankly, a bit less ignorance of how special needs children function inside and outside of mainstream/special schools and programs. I have never been told that Amelia’s needs, such as her deafness, make her ‘too hard’ to deal with, which is the real way of saying ‘we can’t appropriately cater to her needs’. I mentioned them to you mainly so that her instructor/s would have enough information to be sensitive to those needs in practical ways, like making sure she could see the person speaking, and so on.

You would be surprised just how resilient and adaptable a child like Amelia with her unique set of needs can actually be.

Regards, Melinda

Amelia, signing to her swimming teacher (2015)

Amelia, signing to her swimming teacher (2015)

Now I felt better, as though I’d fully advocated for Amelia even if the result was still the same. I might not always be able to knock down the walls that get in her way, but goddamn it, I will always let people know when their stupidity and heartlessness has let us down.

Soon after, I got a call from the company owner and we actually had a good chat about how to properly include someone like Amelia in their activities. It was the conversation I’d expected to have at the outset.

And this person apologised, saying those magic words, ‘I’m sorry that you had such an upsetting experience’. It didn’t dissolve my afternoon of distress, but I did appreciate it.

By this stage though, I wasn’t looking to convince them to let Amelia join in – I don’t want her anywhere near a place that takes such an appalling view of her needs – but I did want the owner to understand what might have worked better in our case. How they might handle future Amelias.

Like, if they had just invited us to come in for a short meeting, we could have had an open and honest discussion about the best kind of class for Amelia. They could have met her rather than judging her abilities over the phone.

Maybe we would have decided mutually to come again at a later time, but really, we’re not solving world peace here, are we? We’re just talking about letting a little girl try something on for size to see if it might have fit.

Instead, they closed their minds to her sight unseen, which is a great shame. Because Amelia’s such a fabulously fun chick, so interesting and full of whimsy. Some people regard her as an asset to their groups, even a leader. This centre will never know her and it’s one hundred percent their loss.

Barriers to access are real and they do hurt. Take note people running programs for kids: pump up your heart valves and have a think about how your special needs policies impact on people who are already doing it pretty hard.

We’re all a part of the same community and when we feel brave enough to step out of our houses to have a go at something new, please hold our hands instead of turning us away.

Inclusion doesn’t have to be an illusion, and you might find that instead of a child being ‘too hard’, they will teach you something priceless about what it means to be alive.