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.

 

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.

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

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.

How do I love thee? Let me count the ways

Taking a spin with a true dancing queen

THIS week, in the midst of Christmas and all of the merry freneticism that its celebration brings, my family lost someone very special.

To me, she was my beautiful Nan. To my Mum, she was an adored and most cherished mother. To my five-year-old daughter Amelia, she was Grandma, with the soft grey hair who loved her very much.

To all, she was the whip-smart woman with the piercing eyes and the gutsy spirit that sustained her until her final moments. Her last breath on this earth.

I already find myself desperately searching my memory for thoughts of her; certain conversations, or just the sound of her voice. Oh, that voice with its unparalleled beauty in speech and in song.

What a gift it was and now I will never hear it again beyond what my mind can recall.

And her lion heart, which she gave to me so many times over the years, always when I needed it most.

Like when Amelia’s deafness was diagnosed and I sat across from her at the Rosebud RSL, tears streaming down my face and I said to her, “Nan, how could I not have known something was wrong?”

She fixed me with those intelligent eyes, filled to the brim with understanding, and simply said, “But you did know, my darling, you did.” As usual, she was right.

My Amelia in safe hands

Nan always understood me and more importantly, she totally ‘got’ my sweet but headstrong daughter. She embraced Amelia’s differences, even learning to sign some key words to her in Auslan.

Among her last words to me was a specific message of love for her great-granddaughter. She could hardly speak by then – that lovely voice now ravaged by her illness – but she wanted me to know that she felt a special connection with Amelia: “We clicked”.

Where else should Amelia’s defiant approach to the world come from, but the pioneering stock that has produced some of the toughest, most wonderful people ever born?

They’re family myths, I know, but we hold tight to their significance in our lives. They make us feel part of something bigger than ourselves. We are not alone if we are together.

I shared so many passions with my Nan. We both loved to read and to swim in the summertime. Those summers spent on the Rye foreshore were some of the happiest times of my life. Kicking back on a lilo, burying each other in the sand, and laughing. Always laughing.

The happiest of times at Rye with our Nan

I know that memories fade, and it makes me panic to think that I won’t be able to remember as easily or clearly the sounds and sights of these times with her.

We have photographs to remind us, but how will I conjure up the touch of my Nan’s hand in mine or the melodic sound of her voice in my ear?

Who else will tell me with such direct and brutal honesty when I’m looking too tired or sick or thin (or not) or if I’m cutting the vegies the ‘wrong’ way? Who will fix me with eyes of steel and not let me lie and say that I’m alright when I’m not? “Come on, Lindy Lou, I know you”.

She did know me, she really, truly did. And I knew her like the skin on my own body or the thoughts in my head that remain unsaid.

Her name was Joyce but people called her Joy. And she was an embodiment of that name: a joy to know, to hold close and count amongst our own.

Be at peace now, precious woman. It’s time to rest.

Channelling Casablanca

Amelia & E: the beginning of a beautiful friendship

I took this photo the other day as Amelia and her younger companion ‘E’ left another session of their social skills group for kids with ASD. They skipped ahead and gripped hands as we made our way to our cars and the remains of the day.

Behind them, E’s Mum and I wrenched our phones hastily from respective pockets to try and capture the moment in time, freeze it in space and hold it fast in our memories.

‘Did you get it? I think I did, I think I got a good one’. You bet I did.

I hadn’t realised that our little ones might think of each other as ‘friends’; it seems like such a foreign concept to apply to children who often find the ins and outs of socialising as remote and mysterious as the moon.

But there are lovely hints of attachment occurring between them; small seedlings of care and thought peeping up from below ground, searching for light and air.

Like when we arrived at the session, I saw E’s Mum holding a Peppa Pig toy in her hand and I said, ‘Oh, is that E’s toy? How cute’.

‘Yes’, she replied, ‘He brought especially it to show Amelia’. Her words and his sweet gesture made me smile, inside and out.

And though Amelia did not pay due homage to Peppa, chosen with only her in mind, she was genuinely excited to see E and content to linger over the fading moments of the afternoon carefully holding his hand.

Walking behind them in happy silence, I laced my own fingers inside my husband’s, our connection an echo of the intertwined children up ahead.

As usual my mind wandered to the movies, the scene reminiscent of Rick and Louis at the end of Casablanca. I found myself thinking, ‘If those two can begin a beautiful friendship, then why not Amelia and E?’

Why ever not?

Deaf like me

Amelia, signing me a tale of whimsy

One of the most exhilarating and scary things about being a parent is watching your child grow and begin to understand more and more about who they are and how they fit (or don’t) into the world around them.

In the beginning, the concept of ‘who they are’ is largely defined by parental opinion and self-indulgent projections such as ‘oh, she has my eyes’, or ‘she’s strong-willed like her Mum’. She is in the world but she’s not her own person yet.

But at some stage, that child will break the shackles of the prescriptive parental narrator and strike out on their own path, discovering ‘who they really are’ on their own terms.

For us, that process is made even more complex by the fact that aside from personality traits, quirks and individual preferences, our five year old Amelia’s life has had some surprise storylines that she is only starting to uncover for herself.

She is deaf. She is also on the autism spectrum. These are weighty facts about our daughter that have taken us years to deal with and understand. We’re far from reconciled to their impact on her life and ours.

For Amelia, the journey to self-discovery is very much at its genesis. About her deafness, she knows that without her hearing aids she can’t hear music, television or clear voices.

In this, she has made an important connection between her hearing loss and the technology she uses to access sound and the world around her.

Then a few months ago, she referred to a teacher at her school as ‘deaf’ in speech and sign but when I gently pressed her on what the word meant, she was unable to explain.

No doubt at Amelia’s school for the deaf she sees, hears and signs the word deaf quite a lot, but it has understandably remained an abstract concept for her. She uses it as a label for people the way she might say “that man is old”, or “my friend is cheeky”.

I hold my breath a bit during these interactions with her because each time I’m waiting to see if the penny has truly dropped. You know, the day she finally asks me about her deafness, not just some vague, remote concept.

I’m also hyper-conscious about not forcing the realisation onto her, before she is ready. It’s one thing to learn that your daughter is deaf and to try and assimilate that word and its meaning into your own sense of their identity.

But this part of her story is not mine to tell or explain. It’s not my right to telegraph such an important fact about who she is. For once, I have to just shut up, listen and wait until Amelia works it out for herself.

Like yesterday, when she came home from school and spotted a picture of a toddler with hearing aids in a newsletter sitting on the kitchen bench. The conversation went like this:

“Mum, the baby has hearing aids like me…”

“Yes, he does have hearing aids”, I said.

“Mmmm”, Amelia pondered for a second and then said and signed, “I’m deaf”.

As usual, I held my breath for a few seconds and then said in a neutral tone, “Are you deaf? Show me the sign again Amelia?”

She signed ‘deaf’ once more. I softly asked, “And what is deaf, Amelia?” She didn’t say.

Then I asked, “Who else is deaf, Amelia?” to test her understanding and she began to list the names of her classmates, all of whom are deaf.

And then quick as a flash she broke the spell that seemed to hang over our chat for a minute and ran off in pursuit of another game and the brief moment of self-realisation came to an end. I exhaled a long, slow breath and smiled.

I’m not sure how much closer she is to understanding what it means to be deaf but it felt like a big deal to me, the first time my girl said that she was deaf. It is no longer an abstract concept that lives outside of her experience or a random label applied to somebody else.

Amelia has begun to comprehend more about who she is, only part of which is being a deaf child. I am sure that once the penny really drops there will be stages when she has different feelings about what deafness (and ASD) mean to her identity. To her sense of self.

But whether it’s a heads or tails proposition, my only job is to hold her hand as I always have and listen and answer her questions with absolute honesty. Like when she asks me if I’m deaf and I have to say no even though I secretly wish I could lie and pretend we are the same.

Out with the mould, in with the new

Do you have anything in beige?

When my daughter Amelia was nearly two and a half, we had her first appointment to be fitted for hearing aids. It’s a big milestone day that one, making the cutting of teeth and other family firsts seem trivial by comparison.

This event was the start of something scary and new, from which there was no turning back. In the two months prior to her deafness being diagnosed, we’d floated anxiously in the no-man’s-land between knowledge and action.

We knew Amelia was deaf but nothing else changed in the weeks that followed. The news just didn’t feel real until the post-diagnosis machinery cranked into gear and Amelia received her hearing aids.

I remember the trepidation I felt, the anxiety that hovered behind me during all of those initial ‘big’ appointments like a dark shadow.

How would we get Amelia to sit still for the mould impressions to be taken? Would we remember all of the instructions given to us?

Thankfully, everything went smoothly and our girl sat statue-like while a strange green substance was squirted into her ear, forming the individual shape of the moulds that would hold her new aids in place.

The audiologist started talking to us about the aids themselves, how they worked, how to put them in and so on. They were a lot smaller than I thought they would be which I remember brought a feeling of relief.

At the time it seemed important that the physical load Amelia would bear on her tiny ears be as light as possible.

Then the audiologist talked us through the choice of colours for the aids and the moulds. There were aids in purple and electric blue and pink moulds that looked like hard candy. They looked sensational but we were not quite ready to be such exhibitionists on our child’s behalf.

On that day, our instinct was to be as conservative as possible, with the standard clear moulds and a discrete silvery colour for the aids chosen for maximum concealment. They would be tasteful, even ‘classy’, but they would never win any prizes for fun (and neither would we).

Back then we cared a little about just how noticeable Amelia’s aids would be to other people. Her ‘disability’ had no other visual signifier beyond the technology she would have to wear every day for the rest of her life.

So, we chose to be boring, to be safe. In the car showroom we were not the people pressing our faces onto the windows of showy luxury vehicles. Nope, we were wearing sensible, knitted cardigans and talking to the salesperson about ‘longevity’ and ‘practicality’. Eek.

Fast-forward three full years, almost to the day, and I’m glad to say that my daughter, far braver and more interesting than us, has cooler ideas about how to drive her hearing aid choices.

There is a special style of coloured ear mould worn by some of the kids at Amelia’s school for the deaf that has not escaped her notice this year. Some kids have a different colour for each ear, while others sport dual-coloured moulds instead, kind of like a Yin Yang pendant. Only, you know, nice.

One of the older boys on her school bus – a unique and beautiful child we are lucky to know – has grey and green moulds that stand out in his ears like sea-coloured whirlpools.

Amelia observed these strikingly individual choices in first term and started reciting the names of the children with different mould colours to me from time to time.

Then one day out of the blue she told me she needed new moulds. Maybe in colour. She was quite coy about her request at this point so I said, “well, we just had new ones made over the summer and they fit just fine, so maybe later in the year”.

But Amelia had taken the idea to heart and she wasn’t about to give up. New ear moulds. In colour. I gotta get me some of those.

About a week before her latest hearing test appointment, I reminded that it was coming up. “Don’t forget we’re going to see your audiologist, IS, next Thursday to play some more listening games”.

There was a brief pause before Amelia replied hopefully, “We get the moulds in purple and pink?”

I stopped mid towel-fold (or something) and smiled to myself. “You bet honey, we can ask IS if she has time to do it after the test.” Amelia clamped down on my semi-promise like a great white shark on an errant surfer – there would be no other outcome except satisfaction of her deep hunger for coloured moulds.

By the time we (with my Mum in tow) were sitting across from IS in her office, Amelia could barely contain her excitement. We tried valiantly to get her to engage in the test but she was too distracted, antsy and generally off her game.

After a frustrating ten or so minutes, she finally turned to me and pulled my shoulder close to her body and whispered into my face, “Ask IS about the new moulds?” Amelia often uses me as her go-between with people but I have rarely felt more urgency than the moment those simple words hit my cheek and revealed the true meaning of her poor showing at the test.

My Mum, IS, and I shared a laugh because we knew there would be no point trying to engage her any further that day. If Amelia wanted new mould impressions taken then, by George, she would have them.

My girl sat still, like that child statue of three years past, in anticipation of this self-directed step in her life as a hearing aid wearer. The green gloop was poured into her ear once more and she waited ever-so-patiently for it to set.

IS produced the colour chart for the moulds and Amelia confirmed the decision we already knew – purple and pink – to be made in the half/half style of her sweet friend from the school bus. It would take an agonising two weeks for them to be prepared and then delivered by mail.

It took all of my Auslan skills to explain to Amelia that some man in a back office wouldn’t be able to produce the colourful moulds on the spot. She kept saying, “No, we wait.” After some wrangling, she reluctantly let go of her heart’s desire and went off to school.

It was a rainy, cold day on the school holidays when the magical delivery finally arrived at our house. I secretly retrieved the envelope from the letter box and attached her new moulds to her aids while she was in the bath.

When Amelia was dried and dressed, she waited for me to bring her aids back to her in the bathroom. Barely containing my own excitement, I carried them in behind my back and asked her to guess which hand held the prize.

Her eyes lit up with instant understanding and delight as she pointed to the left. No, they must be in the right.

I wish it was possible to capture for more than a moment the unbridled joy that shines out from a child’s eyes when they see something special they’ve longed to have and hold in their hands.

It’s a sight that never fails to reach deep into my chest and pull so hard on every heartstring, it’s almost painful. Almost.

But the look on her face when she tried on the new moulds for the first time, well, that was an image I wasn’t going to lose to fading memory. I snapped some photos as she preened (truly) in front of our bathroom mirror, so very proud of her custom-made bling.

Everywhere we went for the next few weeks Amelia would race up to friends and family to show them. She was busting to get back to school to now be a part of the cool kids group who have cut loose from the clear mould crowd.

We are so lucky to be able to send her to a school with other deaf children like her, who are learning together how to express their identities through things like their hearing aids.

They are not ashamed to wear them or have them noticed. On the contrary, they want to shout at the world in loud colours from rooftops, “look at me!” It’s thrilling to see Amelia’s personality and independence take shape through the choices she is beginning to make on her own, especially where her deafness is concerned.

At age five, she knows quite a lot about aids, implants, Auslan and even the sign for ‘deaf’, but she is too young to understand the combined significance of those things in her life. That process is slowly unfolding, inching closer to comprehension every year.

But seeing her assert herself so strongly and positively when it comes to ‘owning’ her hearing aids makes me worry less about how she will cope with the eventual knowledge of being deaf.

Amelia has a ‘come at me’ attitude to most things and I suspect on this score she will not waver. Only time will tell.

In the meantime it makes me happy to realise how far we have travelled from our (short-lived) days as conservative parents of a newly diagnosed deaf child.

I love to pile Amelia’s long hair high on her head so that people will see her aids. Yes, she is deaf and we are genuinely proud of that part of who she is.

And as usual, our daughter is light years ahead, taking us with her to the sky and back on the crest of an exhilarating purple and pink wave that never seems to crash before a new one rises again, brighter than before.

Sign me a story

‘My Uncle’s Donkey’, as told to me by my daughter in Auslan:

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Piano palmistry

At the end of last year, my daughter Amelia graduated from her kindergarten class. As seems to be the custom these days, even for children so young, her school fashioned junior mortarboards out of black cardboard and printed special certificates to mark the occasion.

The mini graduands even had a small stage upon which to stand as they received their laminated diplomas.

The use of academic paraphernalia to honour pre-school achievements had seemed a little over the top to me.

That was until I saw Amelia and her friends take it in turns to leap from the stage-end with unrestrained glee.

I watched them clutching their flowers and personalised documents with raw delight. Check your cynicism at the door, woman, because it is not welcome here.

A proud moment

Bombs away!

This group, which had become so close during the year, really seemed to cherish their final minutes together. They hugged each other tightly and we, the parents, held onto the sight of them gathered for the last time.

To cap off this momentous day, the school’s art teacher came to collect some children to be part of a special project.

The school had been chosen to decorate one of the small street pianos to appear in the Melbourne arts precinct over the summer as part of the ‘Play Me, I’m Yours’ community art installation.

Did we want Amelia to come and put her handprint on the piano in black paint? You bet your sweet Steinways we did.

The teacher led our girl into the art room where a small upright piano stood front and centre. It had been painted with bright, vertical stripes of red, blue, green, yellow and orange. To complete the design, little hand prints were gradually being placed across the surface of the instrument.

Amelia’s palm was dipped in paint and she knelt down under the keys to carefully press it onto a section of blue stripe. I looked in fear at that black hand and her clean, yellow dress, but the teacher was like a magician. Now you see a paint-spattered hand, now you don’t.

A work in progress

Making her mark

The generous teacher then mentioned something to us about where the piano would be located in January but we were too caught up in the events of the morning to commit it to memory. It was enough that Amelia, who had come so far in a year, would be moving on from kindergarten to the big leagues of school.

Leaving her mark in indelible black paint seemed like the most apt way to end things.

Almost a month later, Amelia’s Dad and I were walking near the back of Melbourne’s Arts Centre. We had tickets to see a famous (and as it turns out not very funny) British comedian, so we were killing time in one of our favourite parts of the city. Yeah, that Jimmy Carr is a must see for anyone with a love of finely-crafted one-liners about disabilities and kids with special needs.

As we rounded a bend on the terrace I saw it: the stripy piano with its distinctive hand prints made by the students of the Furlong Park School for Deaf Children.

I recognise that hand print…

A piano with a view

I couldn’t help myself, I jumped into the air and exclaimed loudly, giving my husband a start. It was the unmistakable sound of happiness. Of joy.

Because I’d forgotten all about that piano and Amelia’s palm print so carefully planted there. But seeing it out in public, seeing people playing it for the free enjoyment of others, I felt an overwhelming sense of pride.

The piano was decorated as a gift to the community and finding it by accident on that warm, summer evening felt like a gift to us too. No-one needed to know the identity of the little artist who’d given her right hand print for the sake of art.

But we did. The secret was ours to share and we couldn’t stop smiling. Well, at least until the ‘comedy’ show started.

Taking the lead

Don’t talk to me, I’m busy.

In this photo, Amelia is doing her regular hearing test in the familiar sound booth at Australian Hearing. Normally, she’d have company at the little table with her; her audiologist, IS, helping to prompt her through the listening drills and me, her eternal cheerleader, wearing headphones and an encouraging smile, a poker face, whatever it takes to keep her focused.

But this week, IS decided that Amelia was ready to sit at that table on her own, to take the next step in the lifelong process of checking her hearing levels for change. As she gets older and more engaged with the tests, the need for hardworking mascots and helpers is receding. Amelia is not a baby anymore and it is time for her to rely on me less and less.

So here she is, my big girl all by herself at her little table. Without much explanation about this new set of expectations, IS kicked things off with me consigned to the back seat next to my Mum. Forever my supporter, she was as much a third wheel as anyone in that booth but I still held her hand like I always do.

Amelia simply took control and set about completing her ‘job’, looking up to IS for affirmation, but not behind her. She knew we were there but she really was ready for greater independence. I couldn’t have been more proud as I watched her back, her hands, her head – the calm language of her body – as she drove that test on home.

Next time, Amelia will sit with IS in her office at a much bigger, adult table and they’ll work on the test together. Like equals. Eventually, I won’t be in the room with her at all but I’ll be more than happy just to wait in the background while she takes the lead.

To infinity and beyond

Stage rocket, sending data back to earth

What’s that famous tagline from Ridley Scott’s movie, Alien? ‘In space no-one can hear you scream’.

It somehow came to mind last week in the lead up to the music concert, ‘A Trip to Space’, staged by my daughter Amelia’s school for the deaf.

I hadn’t been paying proper attention to the school newsletter updates about the concert.

I sort of knew it was happening and my husband and I had sold wads of raffle tickets to raise money for the music program, but I had assumed it was only for the older kids at the school.

Phew, I thought. No need to get all stressed out about a new social event with its terror-inducing unknowns for a family that really hates, well, unknowns.

Then it dawned on me a few days from the big rocket launch. Amelia, along with all the other kids from the school’s Early Learning Centre, was expected to attend. And participate. And perform. And we, her fellow rookie astronauts, were to accompany her and watch either a spectacular lunar lift-off or a fiery re-entry to earth.

Regardless, it was to be our maiden voyage into the unchartered world of child pageantry and by Monday I was reaching for my inner sick-bag. I’ve seen Gravity, so I know that space is not for the faint-hearted. There’s a lot of debris out there. And occasionally Sandra Bullock. Who knew if we would make it out alive?

Little notes and pictures started arriving home in Amelia’s kinder bag with instructions about her costume for the night – black clothes from head to toe. Although I was still undecided about whether I would even let her go, I dutifully went out and found the garments she would need. The Right Stuff, as it were.

Then her space training went into over-drive. There was a mid-week rehearsal at the concert venue, a local school hall, and Amelia came home to me pumped to the eyeballs with the mysteries of the world beyond the earth’s atmosphere.

She began humming odd tunes around the house that I’d never heard before. New signs to describe the upcoming event suddenly appeared in her Auslan vocabulary. Her imagination was captured by the importance of her special voyage ahead.

Who was I to stand in her way? When I discovered that all but two of her fellow classmates would be on stage with her, I had to take the plunge. Into that black hole where new experiences lurk with the promise of success and the portent of failure.

I talked it over on the morning of the concert with our family psychologist, JM, who supports us with Amelia’s autism. I confessed my nervousness about the night and she simply asked me: What’s the worst that could happen?

I guess I had visions of my girl struggling to cope and turning on a mighty meltdown within the first two minutes and we – her Dad and I – would tread those familiar boards of embarrassment as we beat a hasty retreat to our car with a screaming banshee in our arms.

People would look at us and judge us to be bad parents of an uncontrollable child. JM reassured me that these negative thoughts were far from the reality of what those families – all with special needs children – would think.

The most important thing was to offer Amelia the chance to be a part of something nurturing and above all, fun.

I am ashamed of my pessimism, of how far I underestimated my daughter, but it is a cold, hard fact of my time as a parent that many family missions are aborted shortly after take-off and there’s no amount of planning you can implement to avoid metaphorical meteor showers.

Pessimism is terribly corrosive because it holds me back from being open to the possibility of change and growth but it is also my friend, ready and on guard to protect me from the risk of heart-break.

But negative feelings are there to be conquered and, like all good colonialists, my husband and I took a collective breath and made the journey anyway. Win or lose, we had to try and we had to hope which is far better than hiding from your own life. Or, far more deplorably, denying your only child a wondrous space adventure.

And it is no exaggeration to say that the concert was close to the best night of our lives. From the moment we stepped out of the car and Amelia ran to join her friends and run with them on the school oval, the planets that had scattered within our orbit suddenly aligned.

The kinder group was scooped up and marshalled expertly by one of their incredible teachers, RS, and before we knew it, our girl was led away from us to get ready and we were free to sit. Just sit. And watch the wonderful performance unfold before us.

We did not need to mitigate or negotiate. I kept waiting for the BAD THING to happen but it never did.

The school had Amelia in its care and, as it has so often this year, it enveloped her in its safe embrace and she was happy to be separate from us. To belong to another group of trusted adults and children. To belong to herself.

Of the 18 numbers performed in Auslan, voice, instrument and dance on the night, Amelia appeared in four magical moments. As debuts go, I put it in the class of say, Barbra Streisand’s captivating introduction to film goers in Funny Girl. Although there’s an outside chance I could be displaying some parental bias.

In any case, my little one took it up to Babs in the show-off stakes and no mistake.

She was a shocking lair up on stage. Whether she was hamming it up with her space walk, her scene-stealing turn on the bongos, or vividly signing the ‘I’ve Got a Grumpy Face’ song, Amelia was lit from within by one sight – her audience. And we couldn’t tear our eyes from her.

After the opening act set to Strauss’s Also sprach Zarathustra (what else?), she bowed deeply, repeated it with her patented Pimpernel hand flourish, then strutted along the stage line and did a few jazzy hand wiggles at her face before standing at the top of the stairs and offering a sombre salute. A salute.

The spotlight was hers to own and she was loving every second of it.

My husband and I have never laughed so hard or been so proud of a single person or event in our lives. Our hearts were fit to burst from the sight of Amelia’s confidence, her presence in the moment. For a deaf girl with autism that is no mean feat, in space or otherwise.

I’d always watched sappy American sitcom renditions of school concerts with a mixture of cynicism and scorn. But that was before our own journey into that world, where our daughter showed us that she is already light years ahead of where we sometimes imagine she is, emotionally and socially.

Amelia spent an hour and half going on stage and off and staying patiently with her merry band of space cadets. There was no crying or screaming or running away. She knew where we were and felt secure enough not to keep seeking us out.

And when she returned to us she looked different to my eyes and it wasn’t just the addition of the silver jetpack to her shoulders or the bright star now stuck to her chest.

A winner in every way

Showing off her jetpack

Every girl needs silver armbands

Because when I looked at her this time I saw only possibilities. The dark matter that often weighs heavily on my mind turned to moon dust for an evening and was replaced by a feeling so radiant it would have outshone the sun.

And that was all before Amelia won the raffle prize – a chocolate hamper fit for an overacting astronaut on her first flight into the beyond. (To be strictly accurate, my husband’s name was on the ticket, but who could deny Amelia another victory on such a glorious occasion?)

At night’s end, we walked to the car with the other families calmly exiting the building. Just plain old walking with laughter and excitement as our soundtrack. Our feet were on the ground but for the next few hours my heart remained in space, and my eyes stayed firmly on the stars.