Thunderbirds are GO

This book is LAUNCHED

IT’S been a while between posts, but here I am back in the blog zone with lots of exciting news to report.

First and foremost, I’m super excited to announce that my book, ‘Amelia & Me: On deafness, autism and parenting by the seat of my pants,’ is now launched and ready to GO.

We had an amazing launch party on the 6th of August with our friends and family joining us to share in the celebrations.

I was so honoured that Catherine Deveny, writer, comedian, speaker and all-round amazing human did the formal honours, launching my book into space with her trademark wisdom and panache.

Catherine’s awesome Gunnas Writing Masterclass convinced me that I was ready to turn my blog into a book, so it meant a lot to me to have her by my side on the night.

Plus we both wore green velvet, so there’s that.

It was also a really special occasion for me to be able to publicly thank Julie Postance, the incomparable self-publishing guru who has been with me every step of the way, helping me transform years of writing into a shiny, new book.

I am indebted to both Catherine and Julie for their encouragement, expertise and belief in my work. I love them.

 

So happy to have made it

My beautiful book on display

With my wonderful mentors, Julie Postance and Catherine Deveny

So now I’m sailing into uncharted waters, seeing where this wild and wonderful adventure will take me next.

For example, like onto live television (!) courtesy of Channel 7 and their afternoon show, The Daily Edition.

Amelia and me on TV

That’s right, this week I was interviewed by Tom Williams, Sarah Cumming and Ryan Phelan about ‘Amelia & Me,’ and although I felt like throwing up into the nearest bin, it was a truly fantastic experience.

You can watch the full interview here.

The best part was seeing the pictures of Amelia watching the segment at school via an Auslan interpreter.

Her face was so filled with pride and excitement. Amelia’s friends told her she’s ‘famous’ now which made her even happier. Me too.

I’ll have loads more news about upcoming media and book events (including a launch at Amelia’s school later this month) so watch this space.

In the meantime, I’ve got a brand spanking new author website which has just gone live. Check it out because I’m really proud of it.

You can buy ‘Amelia & Me’ in e-book and paperback formats through my site or directly from Amazon.

Things are gettin’ real, peeps. Let’s do this.

Time to fly

Just in case you were wondering what I’ve been doing since my last post in August, 2016, here is a little preview of my soon-to-be-published book, Amelia & Me. You heard. The job is nearly done and I’m ready to take it to the bank. Or the library. Seriously, I will bring it to your house.

I’m so proud of the final cover design which I think hits all of the right notes for our very personal story. It was really important that the main photo of me and Amelia should convey our closeness, our directness. We look at the camera the way we look at the world – front on and without flinching.

It’s been a wonderful process over the last ten months pulling over three years of writing together into a manuscript and working with awesomely clever self-publishing, editing and creative people to realise my dream. It takes a village, or at least a super cooperative hamlet.

So, watch this space like a hawk. The proof is in the, well, the proofs. I’m about to finish my final edit before I hand my baby over for printing. It’s scary and exhilarating and I can’t wait.

It’s time to fly, my friends. Don’t look down.

 

The divine Miss M

Big things come in small packages

I LOVE how easily little children fall in love with things; their joy in new experiences and people.

This is especially true of my intense seven-year-old Amelia who hasn’t yet learned to play her emotional cards close to her chest.

She crushes hard on her toys, on newly-met kids in the park and writes passionate letters (and emails and text messages) to her teacher: “Miss S, I love you so much.”

Our home is littered with tender notes left on side tables, Valentines slipped quietly into pockets and drawers.

Then, there is M, our 16-year-old neighbour. A gentle, dark-haired girl who waves to us in the garden and once picked a red flower, passing it to Amelia over the short fence that separates our houses.

A rose by any other teenage girl would not smell nearly as sweet. And with that flower she did win Amelia’s sweet heart. Like, forever.

A few weeks ago, I found Amelia outside, pressed up against the fence, calling M’s name into the cooling night air. “M! Where are you?” There was a note of shyness in her voice, but there was hope too. Lots of hope.

Before I could wrangle her back inside, M suddenly appeared. She said, “I thought I heard you calling me! Let’s play a game.” And over our little fence, M joined hands with Amelia and showed her how to wrestle thumbs. They chatted and laughed together before parting ways.

It was a fleeting interaction, but it meant so much to Amelia. It solidified something growing steadily inside her. That longed for connection with another human being – friendship. She has so much love to give but not always the facility to show it or receive it.

Soon after, Amelia drew a special picture for her new buddy M. She spent a long time on it and together we put it into a special envelope covered in stickers and hearts. I said, “Should we go and give it to her now?” Um, is the Pope a Catholic?

M wasn’t home, so we left the letter in the safe hands of her younger brother. I forgot about it until the next day after Amelia went to school. I checked the letter box for the daily mail and instead found a small gift box and card inside.

It was addressed to Amelia, from M. I carefully took it out and held it in my hands, as though it was fragile, precious. And it was. I’d been worried Amelia’s intensity might be annoying to our teenage neighbour, but I was so, so wrong.

I put the gift inside, ready for its lucky recipient to return home. You’d be forgiven for thinking the present was for me, the way I paced around waiting for the school bus to arrive in our street, desperate to see its secret contents revealed.

Amelia finally came home and I greeted her with the news falling urgently from my lips, “Baby, M left you a present, it’s inside!”

Her eyes widened in disbelief. “M? For me?”

“Yes, for you! Let’s go!”

We ran together into the house, jostling to reach the little box veritably pulsing with life on the kitchen bench. The card contained a beautifully penned thank you note from M. Amelia’s picture had made her day, so here was something in return. Just for her.

Inside the box was a silver chain with a pretty circular pendant depicting a tree. A thing that grows. Like the friendship between a loving deaf, autistic girl and her sweet teenage neighbour.

They are separated by nearly ten years of age and the small fence that separates our houses. M doesn’t always understand what Amelia is trying to say, and my little one misses plenty of sounds and what they mean.

But these things are not barriers; the distance between Amelia and M is remarkably short. When they touch hands and laugh and send each other letters they are just two girls reaching out to each other and finding a friend.

The greatest show on earth

Super trapeze girl

WHEN I see Amelia swinging atop the trapeze, back straight, eyes clear and true, I think: “Anything is possible.”

I don’t think about the time I tried to take her to another circus class someplace else and they said no. No, because she’s deaf and autistic and it was all too hard. My daughter wasn’t worth the effort.

I don’t even think back to the day I took her to a soccer clinic and she lost it, running across the pitches to avoid me, screaming and yelling.

I kept falling over in my desperate effort to catch her, to get us out of there. My legs were grazed and people stared. Their eyes said, “Thank god that’s not me.”

After an eternity in hell, a burly, tattooed man helped me carry her away to our final point of collapse on the nature strip. I held that stranger’s hand so tight and cried enough tears to flood the street.

I forget his name but not his kindness.

My mind has moved on and carried me elsewhere, to human pyramids and balancing acts. To death-defying feats like the tentative first steps taken on a wire.

To a place where a young woman has learned some Auslan without being asked just so Amelia can be more involved. I want to hug her for the longest time.

To Thursday nights when we drop her off in the safe hands of her new troupe of friends and we don’t worry.

It really wasn’t the greatest show on earth…

We sneak a peek at her from the doorway, transfixed by her form sitting shoulder-to-shoulder with kids her own age.

She watches everything like a hawk and is not afraid to try. Suspending her strong body from brightly coloured sashes she looks weightless and free. So are we.

We don’t want a lot more in life than to see our child happy and healthy and safe. To be able to join in and feel included. They’re basic things but what else could be more important?

Nothing. In our world we’ve learned to appreciate the smallest of triumphs. Like the look on Amelia’s face when we pick her up at 6pm and she’s flushed from the fun of it all.

We dreamed of this for her and now we are here. Our little girl’s run away to join the circus but she has our blessing along with our hearts.

I’m deaf and you’re not

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.

 

Signing Santa

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.

 

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

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

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.