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.

 

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.

 

Sphinx in the sand

SHE’S A ‘force of nature’ kind of girl. I sometimes can’t tell where the waves start and she ends. I try to call out to her and forget she can’t hear me. My voice travels in her direction until the wind grabs it and carries it away.

She’s not looking at me anyway. It’s deliberate, this ‘not looking, not looking’ game. No one is in charge but her and she’ll pay attention when she bloody well likes.

I only want to make sure that she plays in the sand near our feet. Just over there not all the way away. So I trudge through tiny shards of shells, slowly broken down from ocean to shore, just to reach her.

I talk to her with my hands. Come closer to Mummy and Daddy. You can play how you like, just stay nearby, okay? My child-Sphinx thinks on that for a second and then nods. It’s okay.

She runs behind me to our point on the beach and stays within the invisible flags of our agreement. I watch her, fully-clothed, splashing and laughing in the water, and say to my husband: “She’s ours, but she’s a stranger too, isn’t she? She belongs only to herself”.

He can only agree.

Deaf like me

Amelia, signing me a tale of whimsy

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?

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.

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.