Soil searching

Up the garden path

Up the garden path, with rose petals

I have something shocking to report.

Something disturbing has happened to me in the wash-up of recent traumatic events.

I never thought this would happen to me as we put the pieces of our little family back together and started to breathe again.

Okay, here goes. I have become … an avid gardener. You heard.

I’m the newest green thumb on the suburban block. A woman with soil permanently wedged beneath her previously manicured fingernails and dirt marks smudged proudly on a rouged cheek.

Marks from the earth are my new war paint. I am obsessed and there is no stopping me now I have started.

There is still no cessation of the intense energy (mania) that drives me from morning to night, but you can’t have everything. And, after all, how much pruning could I achieve without such boundless energy?

The garden has never looked so luscious and cared for in the ten years I have nurtured and neglected it in equal measure.

It started with small steps out in the backyard. My husband was in hospital and after my daughter Amelia went to sleep at night, I’d find myself sitting on the cool ground outside, tearing out weeds and overgrown tendrils of grass.

My hands needed to work so that my rattled mind could stop churning, even as the daylight faded and I could no longer see the garage for the trees. So work is what I did, for days and nights on end.

My partner in garden crime

My little partner in garden crime

I rejected gloves outright, preferring to connect with the often harsh textures of the garden. I endured deep cuts, broken nails, rose thorn splinters, and the pitter-patter of arachnid legs down my arm (eek).

The abrasions on my body at the end of the day satisfied me somehow. They were a positive sign of the exertions that were holding me together.

From weeds, I turned to the wild native shrubs that had suffered from months of inattention. They were locked in a permanently coiled dance, branch arm in tortured arm, plant figures robbed of distinct identities.

I took up my gardening shears and hacked and slashed at these shapeless masses with violent zeal. Sweat ran down my back from the effort, from the sun beating down on my pale skin. But I didn’t feel anything. I was too busy to care.

Inside the frenzy of my activity there was always method, always control. A sense of creating something new with my bare hands and sharp steel. Of taming and cultivating. Surviving.

I was an amateur gardener but I felt like an artist. I stood back to survey the landscape; feral forms had been transformed into shapely bushes with breathing space to call their own.

One willowy tree, previously choked by an untamed knot of green mess, was now free to stand tall and swing high in the breeze.

At night I would stand at the back window and press my hands to the glass, looking out at the garden. My garden. I was changing it for the better; my influence was everywhere.

In the newly planted pots of blooming flowers in pink and blue. Or the water trickling down the path post an evening soaking session for my thirsty friends.

In the dark hours of wakefulness over the next few weeks I would imagine new garden beds. And then in the morning I would set about bringing them to life.

Hanging terrariums dotted with shells collected from some forgotten beach. Plans to convert an arid corner of our property into a secret succulent garden. The movement created by long-limbed plants covered in bright blooms, tucked beneath our Crepe Myrtle tree.

Once the garden had taken root in my imagination, I couldn’t let it go.

Amelia joined me on my intense botanical mission. She lovingly tended to her own little patch of green things; her strawberry plant, the flowers, the tomatoes, mint, kale and parsley (she is a child of Melbourne’s hip northern suburbs after all).

Blooming for the first time

Blooming for the first time

And all of this watched over by a cheeky little garden gnome and a solemn statue of a girl who used to care for my Nan’s own garden before she died.

Our afternoons of toil would usually end the same way – with us covered in mud and Amelia stripping off her clothes to play under the delicious cold spray from the hose.

We grew things, re-shaped them and made them come alive again. One native shrub received some much-needed pruning and water treatment. Weeks later I spotted glorious, bright pink flowers appear on its spiky branches.

In all the years since it was planted, I have never seen those flowers before. It made me so happy to see them, such a generous response to the love I had finally given it.

And though our world isn’t spinning so fast anymore, life is returning to something approaching normal, I feel forever changed by the experience.

I need to be in the garden now, not just to distract myself from pain or worry. It’s a part of me; I’ve poured my soul into it and so we are bound together.

At night, I am uneasy if I haven’t at least dug my hands briefly into the soil or splashed some water over the beds, tucking my plants in for the night.

I step out onto the porch and take my time to look out across the garden towards our worn-out picket fence.

I soak up the warm night air and gaze happily at recent nursery additions now flourishing, and frown over a young plant failing to thrive.

Tomorrow I will endeavour to restore it to good health and hope to find some peace for myself. Just for a little while.

For VR who shares my love of gardening and is a kindred spirit in more ways than one.

Shock and awe

Drawing strength from his little girl

I DIDN’T tell her everything.

How could I? It was hard enough to hold the trauma of it in my own head.

I didn’t tell Amelia that her Daddy had collapsed at the hospital, on the hard, cold ground of the car park.

That I thought he’d fallen over behind me until I saw the way he was lying, arched forward in a twisted ball of agony.

I didn’t recount for her the sounds coming from his mouth in that moment. His urgent struggle to breathe. Unforgettable sounds that escalated to a primal wailing that ripped through his body and ricocheted through mine.

What use to her would it be to paint a vivid picture of that night, flashing in my mind like a horror movie every time I closed my eyes?

I see it all in colours and let me tell ya, it ain’t no rainbow.

There’s the white of my tensed knuckles gripping onto her Daddy’s shirt as three of us tried to keep his convulsing body on its side.

The hideous transition of grey to blue as his face changed hue. That was the moment when his heart stopped. For one minute, then more. Seven all told.

To me, the time stretched into infinity. Seconds expanded into excruciating intervals of pain. I thought he was lost to me forever.

After that there was no colour at all, only panic and movement. Doctors and nurses running into the car park from the hospital corridor with life-saving instruments. I was dragged away.

It turns out it wasn’t our sweet man’s time to die that night. Maybe Lady Luck was smiling down on us. I’m part-Irish, vaguely Protestant, wholly atheist, but I thanked the Gods with all my heart.

Damn it, they owed me one.

Next morning, it was my own mother’s job to pass on the news with careful hands to her grand-daughter. I can think of no-one better for such an important task.

She said: “Honey, your Dad had a sore heart and he went to the hospital feeling sick but he’s much better now. He’ll be home in five days.”

Amelia paused over her breakfast, eyes suddenly shining with almost-tears but her internal dam walls held them in.

My brilliant Mum recognises that explaining time frames to our girl helps her to feel safe. Together they counted out the days on their fingers, reaching Monday as the likely date of her Daddy’s return.

Amelia nodded and her eyes cleared; she could cope with that.

The note from school the next day read: “Amelia seemed a little sad today.”

I watched her out of the corner of my eye, looking for signs of melancholy or worry. As usual, Amelia’s deepest emotions remained just that, buried in the subterranean depths of her enigmatic heart and mind.

But I know that just because she’s not asking questions doesn’t mean she’s not thinking intensely about the world around her.

So in a light voice, I asked her straight out: “Baby, are you feeling a bit sad that your Dad is in the hospital?”

Her reply was prompt and awe-inspiring: “No. I’m strong.” She followed this with a typical Popeye flex of her arms.

Conversation over.

No. I’m strong. You could have picked me up from the floor.

Her response signalled two things to me. One was that she really didn’t want to talk about what was happening. That her way of dealing with the sudden change in our lives was to soldier on as though all was well. I could only respect that.

On a more literal level, Amelia really was saying to me, “It’s okay Mum, I’m tough. I can handle it.”

This wasn’t some statement she’d heard somewhere and was parroting back to me without meaning.

At six, sometimes Amelia’s behaviour still resembles that of a three-year-old. But here she understood that strength is something intangible you call upon in the darkest moments to make it through.

I saw this understanding take further shape when she saw her Dad in the hospital for the first time. She didn’t speak but she held him in one of the gentlest, longest hugs of her life. His silent tears poured into her hair and she held him longer still.

So, I didn’t need to tell her everything, did I? There was so much she already knew. Talking was hard enough for me anyway. Eating and sleeping almost impossible.

Amelia’s very real strength rose up to bolster my own. At night, I held her body close to mine and she placed a hand tenderly on my cheek. She kissed me there with wet lips but I didn’t wipe the moisture away. It made me feel alive.

Never say Neverland

The boy who wouldn't grow up

The boy who wouldn’t grow up

QUESTIONS, always with the questions.

“What’s your name?” Amelia asked me for approximately the hundredth time that week.

I am forever* patient. “My name’s Melinda. What’s your name?” It’s always quid pro quo with us.

A shy smile. Amelia answers, “I’m Peter Pan … and I can fly!” She took off then, milky-white arms aloft, reaching for the sky. Well, the ceiling, anyway.

My six-year-old daughter is Barrie’s boy who wouldn’t grow up. And she can fly.

The meaning of this fantastical claim was not lost on me. I have carried heavy facts about Amelia around in my head for years, details that told me she was very far from flying.

From walking, from talking. Hearing. Learning. Connecting. Growing apace with her peers.

My Peter Pan was tethered to the tarmac by words like “abnormality of development”, “lower border of the normal range”, “limited”, “requiring substantial support”.

Those were the diagnostic words. Deaf and autistic was the poster copy.

It’s one thing to be told harsh things about your child’s development but it is quite another to absorb them. To believe them as the natural order of things.

Her cognitive test scores painted a bleak picture of her abilities when she was four. But who’s to say that was the whole story of who she would turn out to be?

Not me. I just held my breath and waited to see what would really happen.

Time has passed and Amelia’s progress has stunned us and all the people who love her and work to support her.

She can read. Read! By herself in her room, she reads out loud and asks for help with the tricky words and then goes on. “I can do by myself.” Yes, you can.

She can learn, about numbers and rules and abstract things thought beyond her grasp. She is interested in the patterns that shape her world and how things work.

She can sign and speak and tell us a little about her fears and feelings. She can express herself in two languages and through ribald jokes that make me laugh like a drain.

Amelia in full flight

Amelia in full flight

She can listen and hear enough with her hearing aids to learn, to recognise our voices, to feel present in the world. She asks me to sing and holds her ear close to my mouth. Be still my heart.

She can run and jump and do forward somersaults in mid-air and suspend herself in a handstand on the front wall of our house. She is strong and confident in her body, as she proudly tells me with flexed arms, “Me muscles!”

She can, in a quiet voice, ask other children to play with her in the park. Take their hand and show them how to climb. Watch out for the little ones on the slide. Join in.

She introduces herself thus: “My name is Amelia and I wear hearing aids. I’m deaf.” Just like that.

See, she really can fly.

I love her unbridled passion for Peter Pan and all of the whimsy and magic that his story entails. He is brave and so is she, so the velvet-green cap with the feather truly fits.

But part of me wants to tell her that she is better than him, that fictional boy who fears growing old and who is trapped in the arrested development of the endlessly immature.

Peter Pan lives in Neverland, which is a wonderful place for feisty fairies called Tinkerbell and curious children to dream large, but it has its limits, as Barrie himself discovered. Never say Neverland, I reckon.

My Amelia lives in a more wondrous place than that, unimagined when she was two and four and dark limits blocked the sky from view.

Last week she said to me, “Mum, I can’t wait to be older.” Because life is exciting. Growth and development are a cause for happiness and celebration.

For now she is content to play at being Peter Pan, flying high around the lounge room and leaping from the couch launching pad to the stars.

But in Amelia’s ever-expanding world, growing up is the real aim. As time goes on, my quiet faith in this girl grows louder, more insistent. I don’t believe in fairy tales anymore, but I do believe in her.

As Barrie wrote so beautifully, “The moment you doubt whether you can fly, you cease for ever to be able to do it.”

* This statement is caffeine and sleep dependant

Amelia’s midnight garden

She whispered me her nightmare
Crouched in the quiet of the dark
She said
A man-sized cat came out of the garden
And the dirt behind the bushes
Had shifted and lifted up to
Cover her tiny mouth.

Her dark eyes were moon-like
As she clutched my hand
Too hard
And spoke her tale of dread
Of animals not being what they should
And the dirt doing what it could
To cut her voice dead.

My own eyes looked up and out
Beyond the window to the trees
To catch
Signs of the dream in her head
Of lurking feline giant shapes
And murderous soil creeping up
To kill us in our beds.

I whispered softly to my love
It was only a movie in your mind
Not real
Then I signed away her final fears
And sang a song she could not hear
About night-time cats now sleeping
And the garden dirt forever still.


Spidey sense

I like Spider-Man.

I like Spider-Man.

SO MY six-year-old daughter Amelia has discovered superheroes. It was bound to happen. She fancies herself a bit of a muscle-bound crime fighter, so I understand the attraction.

I certainly wouldn’t mess with her. I mean, I don’t.

Amelia’s first superhero love is Spider-Man. He of the red and blue suit, the incredible climbing powers, web-shooting wrists, and sixth ‘Spidey’ sense.

She runs around the house pretending to be him, flicking her wrist with sound effects and attempting her own death-defying leaps from couch to couch (or from couch to unsuspecting parent).

Daredevil girls have all the fun.

It’s always exciting when your child finds passion in something new, whatever it is. So, the other day I bought Amelia a Spider-Man figurine and left it for her to find when she arrived home from school.

Rushing in from the bus, she went straight into her room and saw him. Her very own Spider-Man, replete with an arachnid-embossed button on his chest that when pressed would emit a range of on-brand exclamations and quips.

Amelia pressed the button over and over.

“I’m Spider-Man!”

“Like the suit? It comes with the job.”

She held the figure up close to her ear. I realised that despite her hearing aids, she might find it hard to make out what Spider-Man was saying.

Amelia looked at me quizzically for a second then walked over to a set of stray headphones lying on our hall table. She held one headphone to her hearing aid on the left and pressed the other into her new friend’s chest and pressed the button again.

I was fascinated. She was trying to work out how to direct or amplify the sound being received by her aids via the headphones. They weren’t connected to anything, but it was worth a try.

She turned to me with a cheeky little spark in her eyes and said:

“Mum, Spider-Man talks to me through my hearing aid.”


“You’re not deaf, so you can’t.” That last word was the verbal equivalent of a dismissive hair toss over her shoulder.

No I have no such superpower, but I didn’t care. I loved watching her ingenuity at work and the connections she was making with her deafness and what her hearing aids can do.

Spider-Man was for her and her alone. He has a Spidey sense, and she does too. There are no limits here, only possibilities.

And me? I was the boring ol’ third wheel, ordered into the kitchen for some snacks while they got on with the serious business of being superheroes.

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.