Now, hearing

It's murder on the dance floor.

It’s murder on the dance floor.

Before bedtime last night, my daughter Amelia was doing her usual interpretive dance routine and entertaining us with her best jazz hands followed by the deepest of bows and an enchanting flourish of her hand from brow to floor to signal its choreographic end.

Her avant-garde performance, matched only in its breathtaking awkwardness by Marty, the Dude’s ‘artistic’ landlord in The Big Lebowski, was accompanied by music she had chosen herself. Born Ruffians, if you’re asking.

It’s music she couldn’t really hear as she doesn’t wear her aids at night after her bath. However, like many things in her life, Amelia digs the need for tunes to complete the picture, the context for a show. People dance to music, and so does she, whether she can fully appreciate it or not.

It certainly doesn’t affect her enjoyment of dancing and she knows music, rejoices in it when aided, so her imagination and failsafe memory lend her the rhythms (well, motions) where her hearing cannot.

After about five encores, met with raucous laughter and hearty applause from the couch seats in-the-round, our exhausted tiny dancer opted for a story break to catch her breath.

Amelia picked up her big, interactive book, Peppa Pig on Pirate Island, with its picture buttons to be pressed for character sounds and music that children can play as the story unfolds. You know, Peppa giggles on cue, there’s a jaunty pirate theme and on it goes.

Then something happened that we did not expect, that we had not seen or heard before. After a few seconds of pressing the sound buttons, our girl spoke and signed, “Need hearing aids. Can’t hear it.” She was not annoyed, it was simply a matter of practicality.

We just sat in stunned, wowed silence for a second, because this was the very first time Amelia has ever asked for her aids and explained why. That she needs them to hear.

She knows what they are and doesn’t like to be parted from them but I’ve been waiting to see when she would become aware of just what her aids are for. What they mean beyond mere objects we put in her ears every morning.

Last night was the night for a revelation of that anticipated cognisance of necessity.

Her Dad rushed off to get them as I sat, spellbound by my daughter’s sudden self-realisation – this emerging understanding of being without hearing. Of the connection between her aids and sound. Of being deaf.

As an audience, we could not have been more gripped by the scene playing out before us. She’d trumped herself in the post-dance segment of the evening’s activities.

Amelia nodded approvingly as the aids were finally inserted and switched on. Then she sat down again and pushed another Peppa-related button. Her voice was clear and true as she announced, “Now, hearing!” Yes, my beautiful girl. Now hearing.

What a moment this was for us and for her. I wonder all the time about when Amelia will begin to understand that she is deaf and what this means to her life and her identity.

There are many more layers of this process to come for her and I have a feeling none will be as matter of fact as this one.

So last night represented an important first – the first time Amelia seemed to know that her ears do not operate the way ours do and that she would need something extra to let the world of sound in.

She’s so used to enjoying books, movies, music without the aural reach provided by her aids but this time, it wasn’t enough.

Amelia may have chosen to dance as usual to music mostly lost on her ears but she’d have her Peppa Pig pirate tale with the sound, thanks very much.

Mermaids for merit

MermaidAt the end of one particularly challenging day with our daughter Amelia, in what sometimes feels more like a warzone than family home, my husband turned to me and in true deadpan style said, “they’re going to give us a VC for this”. Not for valour perhaps, but for stamina definitely. Or maybe survival.

Just who might award us the prestigious Victoria Cross for parenting in said domestic warzone, well, I’m not really sure.

And I don’t think the Jacka Boulevard in St. Kilda is in any actual danger of being re-named in our honour, but at that moment a VC seemed like the least “they” could give us.

Decorations, awards or prizes, either real or imagined, are important I think. For me, the reward is being married to someone with a whip-smart sense of humour who can cut through my darkest moods and elicit laughter instead of tears.

For Amelia, coping with deafness and autism in a world that’s not exactly fit for purpose, the opportunities for prizes are slim. Simply making it through the difficult day, the stressful hour, usually takes more than mere gallantry on her part.

Some days I want to pin a medal on her just for making it over new hurdles and managing to be such a wild and wonderful human being into the bargain.

Other days, there are no deeds to be rewarded, no behaviours to be mentioned in dispatches. I close the blinds and wait for the dusk and hope for a better one tomorrow.

But you have to keep a sense of perspective about things like this. I would, for instance, give Amelia a thousand dollars if she would sleep past 7am. Just once. Perspective’s a very individual thing.

I have actually assembled a box of “treasures” (read = toys that cost no more than $2 at K-Mart) that she can dip into if she makes it to 6am each morning without appearing by our bedside. I’m sad to say the box is still filled to the brim with handpicked delights.

Clearly, the lack of treats is not harming our daughter’s psyche too much. One recent morning, when Amelia trotted into our bedroom at her customary wake-up time of 5am, she smiled, stretched like an evil cat and said “Oh well, no present!”. It was the four-year-old’s version of “C’est la vie!”

In our situation, I think there is a need to sometimes reward behaviours that come quite easily to other children. We’re not dealing with an ordinary person who acts in a predictable way most of the time, so there are occasions when special rewards are bestowed with good reason.

Two weeks ago, Amelia and I went to her regular speech therapy appointment. Suffice to say it was an unmitigated disaster. My daughter did her best impression of Linda Blair from The Exorcist as I, Ellen Burstyn, cowered in a corner to avoid the torrent of screams and kicks aimed in my direction.

There was no pea-coloured vomit and I didn’t see her head spin all the way around, but she hit some serious Mercedes McCambridge high notes in her demonic performance.

On Tuesday we returned, and I admit to being nervous about how the session would go. Amelia assured me she would not be angry or scream or try to hurt me, but inside that room I knew she would have little control over these things if the environmental patterns didn’t align the way she needed them to.

Yet align they must have, because for 40 minutes her angelic face matched the serenity of her demeanour and despite tiny ripples in the pool of her mind, Amelia played well and learnt well too. It was fantastic.

Like me, our speech therapist, PP, understood how impressive Amelia’s calm and cooperative effort that morning was so she decided to give her a merit award. It was only a rudimentary certificate with mermaids on it, but my girl was transfixed, her eyes shining with delight.

Mermaids for merit and every one earned

Mermaids for merit and every one earned

PP spoke out loud as she wrote Amelia’s name on the paper and outlined the reasons for her award, namely, for “playing and for being a good girl”.

It doesn’t sound like much, but when PP handed it over, my dear girl accepted that certificate and pressed it to her little chest with pride.

Because it meant something to her to have her good behaviour acknowledged and enshrined on a personalised artefact that was hers to keep.

I could see it on her face, that happiness as her eyes closed for a second to pause on just how good it felt to win something.

And it was a win. Every time Amelia is able to sit for a while longer and learn a little more, not just about speech and language, but also how to observe the tricky rules of play, she is gaining more of the social skills she needs to cope in the world.

For the rest of the day she showed every man, Nan and her dogs that merit award and it made it onto the fridge next to her animal magnets and her cow drawing with the fur appliqué.

I sent a photo of Amelia holding it to her Dad because I needed to share it with him as much as he needed to see it. Small things, tiny rewards, are enormously significant to us all these days.

Although, I still wouldn’t say no to a VC. Or a thousand dollars. Or even just one decent night’s sleep.