I’m deaf and you’re not

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Amelia, free spirit & proud deaf girl

I WATCHED her playing in the park by the ocean. Another little girl approached and asked her in a tiny voice, “Do you want to play with me?”

Amelia was moving past her and didn’t hear the question. The girl was shy and took silence to mean rejection.

I quickly intervened. “Hi there sweet one. Amelia is deaf so she didn’t quite hear you. Come over and ask her again.” I translated.

She was called Alexandra. With names and ages hastily exchanged they were off, running and laughing and joking like the oldest of friends.

I sat once more and drank in the simplicity of childish play. The natural rhythm of it. The ease.

Alexandra had a wand with magic powers deployed most usefully when she was tagged “it”.

Not to be outdone, Amelia held up her hair and declared triumphantly, “I have hearing aids. I’m deaf and you’re not.”

Her face shone with pride. So did mine.

Toy like her

Asking for the impossible?

PRE-CHRISTMAS discussion around gifts and the tricky scenario of matching the heart’s desire of an extremely particular six-year-old with those gifts.

Me: “What do want Father Christmas to bring you this year, chicky?”

Amelia: “I want a Barbie doll with hearing aids like mine.”

With hearing aids like mine.

Hmm, I thought. I don’t know if Mattel has made great strides in the toys-for-kids-with-disabilities space to date. Apart from a few limited edition examples, true diversity in Barbie-land seems a long way off.

But old Saint Nick has but one KPI and that is to deliver special goods to order, so as his best elf-in-training, I took up the challenge on his behalf. And I never fail at things like that. Ever.

Amelia is happy to picture herself as other people, imaginary or real. Some days she gets her super-hero vibe on with a bit of Spider-Man play. Other times she wants to act like a baby and be rocked and sung to, giggling into my chest as we pretend.

Kids are fabulous at dreaming up fantasy worlds. But often the most exciting thing for little people (and big people too) is when they recognise something of themselves in their peers, on television, or in books.

So imagine if you are a proud, bilingual deaf girl – and that fact is rather central to your sense of identity – but you hardly ever see that experience reflected anywhere at all. No characters with hearing aids, or who use sign language.

To understand what a critical deficiency this is, it is important to know that Amelia goes to a school for deaf children, so during the week she is surrounded by other deaf children and adults. It is the norm for her.

Yet it’s a rarefied environment, specific to her school life. In the bigger, more dominant hearing world, she is more or less on her own.

Thankfully the times are beginning to change a little, and a wonderful social media campaign (founded by journalist Rebecca Atkinson) for diversity in toys called #Toylikeme has paved the way ahead of us.

We don’t need to lobby toy companies to make Amelia’s doll-with-hearing-aids dream come true, because this movement already has with some success.

My favourite of the companies to jump on board with the idea is called Makies in the UK. They already create gorgeous dolls that can be designed to suit a wide range of looks, clothes (I love the archaeologist career pack) and accessories.

Now they’ve added a range that allows for another level of choice where hearing aids, cochlear implants, wheelchairs, birthmarks and so on are finally a possibility. I was all over it.

After I lovingly chose the specs for Amelia’s doll that shares her name, hair colour, sweet smile and quirky clothes sense, I clicked on ‘hearing aids – pink’. CONFIRM ORDER. Done.

On Monday, the doll version of Amelia arrived and she’s everything my girl (and I) had hoped for. I am beside myself with excitement to see her face on Christmas Day when they meet for the first time.

Just two cool girls with long blonde hair, dark eyes and hearing aids, hanging out together and wondering how Santa could be so switched on.

 

In dreams, you’re mine

baby-photographyWE WERE at dinner with friends when I saw the bonny baby at the next table. A new-born covered in a light muslin wrap, protected from the too-cool air inside.

His mother was cuddling him in the warmth of her arms. She rocked him back and forth, swaying rhythmically in her seat.

Her beloved one had just woken without protest, but she was soothing him with the closeness of her body, the soft murmuring on her lips.

I was mesmerised. Trapped in a zone with them I could never truly share.

There were no tears from him, no raucous babble; he simply stared up at her with fixated wonder. His mother.

The yearning inside me was powerful, like I’d been sucker punched without warning. It hurt in a distant part of myself I’ve tried to bury. But it’s always there; it grows stronger with age.

It rears its ugly head sometimes when I pass a pram in the street and glimpse the soft skin of infant feet, bouncing with the movement created by the street. My stomach lurches; I look away.

Or like the day when I was walking behind a man carrying a sleeping child in his arms and I put my hand out as if to touch a silken baby cheek. They moved out of reach and I let my possessed hand fall back by my side.

Every so often I cross the road to save myself the heartache. I don’t always have a choice.

This night, I stopped the conversation at our table mid-stream: “Oh god, look at that beautiful baby. Just there. He’s so sweet! Look how tenderly she’s holding him.”

My companions politely indulged me for a moment. I wanted to go over and hold that baby to my chest with a ferocity of feeling that shocked me.

It took all of my strength to resist the urge, but I wrangled it, pushed that dreadful longing down into the dark where it belongs. There’s no cure for it anyway.

So, I don’t tell anyone that it’s there. It’s a private pain that ebbs and flows.

Instead when I’m asked by strangers for the millionth time why we “only” have one child, I say: “No, I can’t have any more children, but really we were happy to have ‘just’ one.”

Or: “IVF was so very hard that we didn’t have the strength to go through it all again.”

And: “Our daughter has challenges and needs so much extra help and support. It was meant to be this way.”

We are lucky. We live with grief. But we have no regrets.

Signing Santa

Best. Santa. Ever.

Best. Santa. Ever.

IT’S THAT time of year again. Christmas is just around the corner and you can feel the urgency (panic) in the air and on the roads.

I’m steadfastly avoiding the chaos of shopping malls, except in the virtual world where you can shop at ease (and in your underwear) without being elbowed or causing a public scandal.

It was on one of my online voyages that I came across a magical initiative offered by a shopping centre in the UK called the intu Metrocentre.

Naturally, Santa was going to be dropping in to make a lot of generous promises for parents to try and keep.

And on two special Sundays, Santa would be signing to deaf children clutching their own dreams of bikes, superheroes and so much more.

I flipped over the sheer coolness of the idea, so unique in my experience as the parent of a deaf nearly seven-year-old who has reached peak Christmas excitement in 2015. I shouted my approval to the company from the rooftops of social media and to my delight, I received a wonderful surprise message in return.

How would we like their signing Santa to make a video message for our daughter Amelia?

Is the Pope a Catholic? You bet your life we would LOVE that, I replied. I was really bowled over by the unexpected generosity of their offer to us. There are so few deaf characters or stories in the mass media, but having the big guy from the North Pole fluent in sign language* seemed like a radical start to our festive season.

And about a week later, Amelia’s video arrived in my inbox. The proof of its worth is in the stunning, personalised Christmas pudding, provided by Santa and Mrs Claus:

Christmas morning will be full of lovingly chosen revelations for Amelia. But she has received an early gift this year, and its unique contents made her face shine with joy and unbridled excitement.

Amelia’s mouth dropped open when Mrs Claus mentioned her passion for Spider-Man (how did she know?). She followed the message closely and copied the signs she recognised about the reindeer and snacks for Santa and his helpers.

When it had finished, she pressed replay over and over, endlessly enchanted by it all. It’s simply a gorgeous video; we absolutely love it. Especially the bit where Santa tells Amelia to be a good girl and go to sleep on Christmas Eve.

If he could write that message in the night sky and hang some lights off it, that’d be awesome too.

*Although the message is in British Sign Language and Amelia uses Auslan, many of the signs were familiar to her so she followed it well.

 

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