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.

Careful she might (not) hear you

I’M NOT sure precisely when I started worrying about the social impact of my daughter Amelia’s deafness. Maybe it was the day I read too much online about how isolating, confusing and downright exhausting social experiences can be for deaf kids, always up against it in the hearing world.

Daunting words in bold-face leapt out at me from the computer screen. Sharp-edged ones like, depression. Anxiety. Paranoia. And anger. That one always seemed to be in italics for maximum impact.

It’s not a doom-sayer’s checklist – ‘nasty things coming your way when you’re raising a deaf child’ – but it is a set of emotional risk factors that can’t be taken lightly.

My aim as a parent is to hopefully reduce their power to hurt my daughter on her path between two contrasting worlds, deaf and hearing.

Amelia is not quite six years old and we have only known about her deafness for a tick under four years. It’s not a long time in the grand scheme of things. But already I see just how easy it is for her as a deaf child to be left out or excluded by virtue of her difference to other people.

Let’s take birthday parties as a classic example. Oh birthday parties, how I hate thee with a passion. It’s unavoidable, but kid’s parties are the worst kind of place for a deaf child to feel a part of the natural order of things.

Because they’re too loud, too chaotic, too MAD for Amelia to make sense of what is going on around her. Sure, she wears hearing aids but they are next to useless in the face of such an intense racket. Those little devices can’t sift the wheat sounds from the cacophonous chaff and so she is mostly lost.

I watch her making her way with excited bewilderment around these parties and I feel like throwing a huge, warm blanket over her. Underneath its soft layers, background noise would be reduced to a gentle hum that would not compete with voices speaking clearly in merry conversation.

In either context Amelia is alone. ‘Alone’ in the noisy crowd, or by herself beneath the blanket I throw over her every day when we come home and I can set things up exactly as she needs them to be.

It is because of this potential for loneliness that I love being able to send her to a school for deaf children. When I visit Amelia there and see her with her classroom comrades, it’s sometimes hard to see where she starts and they finish.

The joy of school etched on her face.

These six classmates have been together for almost two years now and they are incredibly close. Whether they speak or sign to each other there is something almost organic about how they interact.

It’s born of the time they’ve spent bonding as friends but it is also the result of their shared identities as bilingual deaf kids. Communication between these children operates on a plane of mutual instinct and understanding; touching or tapping to gain attention, waving to be seen or heard, using gesture to add meaning: all form the basis of a code that marks them out as members of a club, a culture.

Within this rarefied environment, Amelia and the knowledge required to be with her and make her feel like an insider are known to everyone. I never need to worry about a scary thing like social isolation.

Seeing how crucial communication is to Amelia and her sense of belonging, it is all the more important for us, her hearing family, to be diligent about always involving her in social activities and conversations.

When we have friends over to visit, she becomes highly agitated and manic when there is a lot of conversation happening across her, between adults engaged with each other rather than with her.

Amelia yells at us over and over again to explain, “What are you talking about? What are you talking about?!” She throws her body into the mix too, placing herself in our eye line so we don’t ever forget she’s there waiting to be included.

Of course she needs to learn when to wait her turn (good luck) and it is less than socially optimal for us to have to keep stopping and explaining each story to her, but it is her right to be factored into the cut-and-thrust of social chatter.

It is much harder for Amelia to find her way in larger social situations where competing sounds blend into a baffling wall of confusing sounds and she sort of disappears under the radar, unable to get her bearings without a hearing compass to guide her.

This is where our greatest challenge lies, in reminding other people to take a minute to stop and talk to her, lean down close to her face so she can see their lips when they are speaking, use their hands to make the meaning of their words clearer. To see her and invite her in.

In reality, it doesn’t take much to make a child like Amelia feel involved AND accepted. I see this every time we spend time with our closest friends, GH and NB and their boys. It’s so uncomplicated, the way they ask Amelia how to sign certain words, to share her second language with them.

I watch Amelia’s eyes light up with pleasure as she shows them how to sign ‘turtle’ or ‘hippo’ in Auslan. They sign the words back to her and, hey presto, she’s in their world and they are in hers.

We recently went on holiday together and stayed in the same cottage. At night time as we were getting our kids ready for bed, there was always some story-time happening in the lounge room.

Sign of the times: Amelia and Jeremy take their friendship to the next level.

Unprompted on the first night, Amelia grabbed a book and sat next to our friends’ youngest boy. She opened the first page and started telling him the story completely in Auslan, with her voice ‘switched off’. I’ve never seen her do that with anyone outside of her family or deaf friends before.

And he loved it, watching her hands describe the flow of river water or the fire expelled by a scary dragon. Amelia repeated this routine each night, and I could tell she felt proud to be like a big sister to her sweet little friend, able to teach him something new. It is lonely to be an only child too.

Sometimes I think it’s children who know best how to cut through all of this stuff and find some valuable common ground.

Like the other day when Amelia was with her Dad in the park and she ran over to ‘talk’ to some older boys, aged maybe nine or ten.

Her speech wasn’t really up to an in-depth gossip session but she had a mighty crack anyway. In these situations she tends to make a lot of noise, such as loud bird-screeching sounds and flaps her arms around, in her often-strange attempt to say ‘hi’ and make friends.

One boy saw Amelia’s hearing aids and asked her Dad if she was deaf, which he confirmed. “Oh, we thought she was disabled or something but then we saw her hearing aids”.

The boys then welcomed Amelia into their group and hung out with her. They had zero anxiety about approaching her in the ‘wrong’ way. They got the hard questions out of the way early and then all there was left to do was play.

And it wasn’t that they were tolerating her presence, the boys actively shared their games and conversations with Amelia. They let her hold their hands and there was mutual enjoyment of the time spent together in a small park in the suburbs.

I know that this was a special event because of the way my husband told it to me. He spoke about that main boy reverentially, because for about fifteen minutes he took our daughter into his world and any present worries about her just melted away.

Her isolation, and my husband’s, were delayed for an afternoon, halted by the friendliness of those boys and their easy acceptance of Amelia.

And so was mine. Social isolation isn’t just a huge risk factor for deaf children, rather it applies to their parents too. Because for every child or adult who ‘gets it’ there are so many others who don’t and that is an alienating fact indeed.

Thankfully at the moment, Amelia isn’t really cognisant of the people who accidentally ignore her, nor does she seem to feel the exclusionary effects of situations in which she is a natural outsider. The big job for us as she grows is to try and minimise the impact of this kind of isolation on her generous little heart.

All we can hope for is that there are enough loving family members, cool boys in the park and sweet little friends who enjoy their story time in Auslan to protect her from the feelings of loneliness when they come. And try though we might to stop them, they will come.

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.

Sign me a story

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

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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.

It’s a blackboard jungle out there

Nobody ever thinks that you’re going to send your child to a special school. You know, you don’t wake up and think to yourself, I really hope my child gets into a special school. That’s just not how we are is it? I think I’ve changed.
— Sara James (‘A Place for Us’, Australian Story, 12 August, 2013)

The road to school is paved with good intentions (and a lot of hope)

I recently watched this episode of Australian Story and the above quote from Sara James, mother of a young daughter with a disability, stopped me dead in my viewing tracks.

Because a variation on her words could so easily have been spoken by me about my own little girl, Amelia, who will begin her primary school years at a school for deaf children.

We certainly didn’t think we would end up sending her to anything other than a mainstream school. Going to any other kind of school wasn’t on the list of hopes we had for her before she was born, but like Sara James, I have changed my mind about how I feel about this too.

You see, Amelia’s deafness and autism (and their impact on her development) make it impossible for us to plan her school years more than 6-12 months ahead. Right now, we know where she’ll be next year but after that, it’s hard to be more definite.

The pre-birth notion of mapping out an arrow-straight educational course for her, from attendance at the small local kindergarten in the church hall a few streets away, to the nearby primary school we liked because of its bright, new buildings and wide open spaces is now just a fanciful set of ideas turned to dust.

Thankfully, we didn’t have enough time to really take those places to heart before we understood that for us, and for Amelia, the path of life would never be so clear-cut or sure. We have also worked out that institutional structures won’t always be central to our truest, deepest wishes for her.

What do we care about brand new buildings now, or the ‘best’ scholastic reputations or keeping up with the expectations of others? Not a goddamn thing, because when the goal posts move to the margins you have to start playing a different game – the long game.

It’s funny how far my attitude to this situation of uncertainty has evolved in a period of just two years, as we have adapted to two life-altering diagnoses before Amelia is five years old.

I will never forget the first question that popped into my head when the audiologist at the Royal Children’s Hospital opened the floor to me after we found out that Amelia was deaf: “Will she be able to go to a normal school?”

Normal. I would cringe at that word now, but back then, I seized on it without thinking twice. But in that room, ‘normal’ was just a code for the life I had imagined for Amelia while it slipped through my hands in a matter of minutes.

What I really wanted to know was, “Will she be able to live the life I expected her to have, just like everyone else? Do I dare to hope that despite her deafness (her difference) that her life will be easy enough to navigate? Please, will she be okay?”

I admit it was a desperate grab for a slice of optimism about the future. I’m sure my questions, both articulated and unsaid, are not uncommon to those parents who have found themselves in a similarly dramatic position.

My panicked mind flew years ahead to school because it was an obvious point on our family timeline where I imagined the normality of our lives would truly be tested. Before then, the outcomes for pre-school aged children are much more private and far less scrutinised.

If school age represented a big fork in the road, I didn’t want us to take a hard left while everyone else got to turn right. We’re most of us pack animals at heart, and never more so when trying to slot our children into the ‘safety’ of the herd.

The audiologist reassured me, “Yes, with lots of work on her speech and language, Amelia will catch up by the time she is six or seven. She will be able to go to a mainstream school.” At the time, there was no reason to think otherwise.

So, I clung to that small promise for the next two years. I had to believe that if we just did the tough yards of early intervention and speech therapy and everything else, we would emerge from this temporary blackout and resume normal programming.

But something happens to you over the years of taking your child to appointments and tests and scary places you never thought you’d be. You grow into it, you stop resisting and you begin to accept this life as the real one, the one you were meant to have.

It started in no small way with Amelia’s time at her three-year-old bilingual (Auslan and English) kindergarten run by the Aurora School’s early intervention service. It gave me a chance to see first-hand the benefits of a bilingual learning environment tailored for deaf kids.

Far from emphasising difference, this program offered its charges the security of shared experience. It gave them multiple ways to communicate (sign, speech, gesture), exposure to a wonderful Deaf role model and the freedom to develop at their own pace.

I watched Amelia embrace the visual communication that helped connect her to people, places and things. That kinder year laid some important foundations for her when she needed it most.

By the time she was four, it was clear that Amelia still needed a lot of support to develop her speech, language and social skills. There seemed little point throwing her into the deep end of a mainstream kindergarten three days a week just so I could walk her there and console myself about ‘normality’.

We chose the bilingual deaf kindergarten on our side of the city because it is a 20 minute drive away, and is part of a primary school for the deaf so there’s lots of expertise and support available.

Three of Amelia’s classmates from Aurora joined her there this year, so she’s been able to follow a group of friends through the early stages of school life. In this, we count ourselves very lucky indeed.

Hand up who’s ready for school next year?

Seeing my daughter’s growth in stature and self in this class has filled me with a happiness I did not dare wish for at the start of the year. It is so clear to me that she has found a soft, enriching place to land while being challenged to learn and play in novel and stimulating ways.

At this school, deafness is the baseline, the common denominator. It defines what is the same about her peers, not what is different. It requires no explanation; it is simply understood and catered for in every possible way.

Amelia is talking and signing so much more every day and is fast outstripping her mother’s knowledge of Auslan. She’s even started correcting me when I try to copy a new sign she brings home with her at night. Cheeky little blighter.

My girl will turn five in January next year and I did not think that she would be ready for school, any school, by this age. The recent diagnosis of autism didn’t knock us off a straight line because we’ve never known one. It merely confirmed to us that there is still much work to be done.

I thought perhaps Amelia would repeat another year of kinder, play it safe for a bit and see what the following year might bring. Being a January baby I could have reassured myself that she was entitled to an extra twelve months of development under her belt.

But her marvellous kinder teachers were having none of this overly cautious, pessimistic stuff. It is their strong belief, and I do have faith in their opinion, that Amelia is ready to make the leap to the big kids’ part of school.

It helps that our paediatrician and child psychologist support this assessment and agree that a bilingual school for deaf children is the best place to ‘super-charge’ her progress.

Although this decision made me a little nervous, I couldn’t feel more supported by all of the people who count. I soon realised how low risk our choice was while paving the way for so many benefits and rewards.

I took a tour of the primary school and current Prep class last week and discovered it has four children with the teaching shared by two people (one deaf, one hearing). Not fourteen kids or ten. FOUR.

I had heard that the numbers were small but I had no idea just how optimally low they would be. The numbers are capped at eight, but five is usually the highest number. Now that’s a teacher-pupil ratio we can all live with.

The school already has a number of children who are both deaf and autistic so there is plenty of built-in specialist support on the spot and ready to go.

The primary school children have weekly speech therapy sessions and start to learn more formally about deafness and Deaf Culture among the other programs like art and sport and music that make up the curriculum.

What this unique context means for Amelia is that despite her less-than-perfect start to life, at five she will be able to go to school with a handful of friends, one of whom she has known since she was three. They are a tightly bonded group and it’s thrilling to see them advance together.

Money can’t buy the kind of confidence and self-esteem that comes from progressing with your peers from one milestone to the next, no matter what your individual challenges might be.

In a specialised setting like this, every child gets a chance to grow and move on and up.

If the next 12 months are principally about taking stress off Amelia’s shoulders and helping her to realise her potential, then I couldn’t really think of a more suitable place for her to be.

No mainstream school with all the best intentions, good will and deaf-friendly technology can give her the same guarantees of security and personalised support, particularly at this most crucial time.

I do not see this choice of a school for the deaf as a compromise or as something below par, as I might have two years ago. We are choosing the right school at the right time for our daughter and her needs. Our family feels incredibly fortunate to be able send Amelia there.

If you’d asked me back in 2011 if Amelia would be starting school in 2014 and where she would be going, I would have answered, “I just don’t know.” But here we are, with our collective bags packed with books and excitement, ready for school next year. Prep is a happening thing.

So, I’ve opened my mind and my heart a little bit more, just a touch, to let in the dreams that Amelia’s ascension will bring. She will stand on our porch in her red and blue school uniform and have her photo taken and maybe I’ll surprise myself and be one of those mums who cries on her first day.

Or maybe not. But who even cares? Because my beautiful girl’s going to school, and baby that is a wonderful thing.

Further reading:
The brilliant Aussie Deaf Kids website has an informative overview of the types of schools available to families of deaf children. The general section on primary school is also a valuable one for parents with children entering into this stage of learning.

Acting out a mellow-drama

No-one does pathos better than Jackie Coogan in The Kid (1921)

I was talking to the mother of one of my daughter Amelia’s kinder mates the other day. Her little girl, like mine, was born with a hearing loss and has additional needs.

She was telling me about how her daughter had started ballet this year and how transformative the classes had been, how happy they had made her.

The impetus for enrolling her in ballet came partly from her child’s interest but also from the family’s need to do something ‘normal’ outside of all the therapy and medical appointments that populate their days.

Just one day, a single hour, a few stolen moments, where her daughter is merely a girl who likes to wear a tutu, stand in first position and have a go at a plié.

As Hooper says to Quint when they famously compare battle scars in Jaws, I got that beat.

Meaning, I know what it feels like to long for normality in the midst of intense times punctuated by diagnoses and treatments that stretch out before us like a highway with no end.

Our weekly escape isn’t ballet though, it’s Drama Play which is held every Friday in a small church hall on the other side of the city.

The program is run by a youth theatre company and a finer group of creative adults working with children you could not hope to meet.

It’s not that I think Amelia is a budding thespian or the next Jackie Coogan (pre-Uncle Fester), even if she does seem to have a flair for mock-pathos.

The point of going is partly about tapping into a stress-free activity which might help to build her confidence and her understanding of social situations.

But the main reason is far less didactic – I’m just looking for a safe place outside of home and kinder where Amelia can simply be herself. No needles, no tests, no judgements, just fun if and when she chooses to participate.

Each session is loosely structured around a wonderful children’s story which is told in various modes: verbally, visually and through play. A hand-drawn map of the morning’s activities (courtesy of the gifted HL) shows us where we are and also where we’re headed.

Over a child-friendly 45 minutes, the little troupe aged between three and five are led by three awesome pied pipers whose intuitive approach to the creative needs of their charges has been inspiring to watch.

To commence, we sit on colourful cushions for the welcome song (accompanied by animated gestures) then we do some mad cavorting as we ‘sign’ our names with our bodies.

Time is set aside for some free-form dance where every child has a turn to express their individuality and lead the group with their own special moves. No-one directs or pushes. The adults are there to guide and encourage, or step back if that is the appropriate response.

Amelia still talks to me excitedly about a session from a number of weeks ago when the theme tune from the Harry Potter movies was the soundtrack to her turn at the helm of the dance parade.

Back then it didn’t seem as though she was super aware that the spotlight was on her for her two minutes of fame, but these happy recollections tell a different story.

There is a clue in this for me that involves not worrying too much about what Amelia appears to be feeling or experiencing in the moment because looks can be deceiving about just how deep her engagement with the world really is.

Story time is conducted by the dynamic AW who reads to us enchantingly from a carefully chosen book, like Where the Wild Things Are, by Maurice Sendak. Then this narrative world is opened out to include the children and the scope of their imaginations.

The little actors are helped to set up key parts of the story with props, often tactile objects like furry carpets or textured grass-like mats. Then they become ‘Max’, playing the role of the little boy from Sendak’s tale – untamed things on the hunt for an adventure of their own making.

There are no passengers on this journey of self-discovery; parents can’t opt out for fear of embarrassment. We are drawn into the performance fray as much as the little ones and for me it’s actually incredibly freeing to run and jump and sing and harness my ‘child within’.

A final map-check tells us it’s time to go home, so we belt out the closing number and say our goobyes. The time really flies when you are laughing and soaking up the kid’s joyful antics.

I like the sessions because they are so visual and full of non-verbal communication. I’m also a huge fan of the way they follow a familiar pattern every time but allow for loads of flexibility and inventiveness. You won’t find a more go-with-the-flow space to be with small children.

For a bilingual (Auslan and speech) deaf girl with autism who is often inflexible, sometimes anxious and always into routine, Drama Play is a match made in heaven. And there is so much ROOM to play or not play, whatever her mood is on a given day.

Sometimes, she takes 20 minutes to warm up but no-one fusses over her. If she prefers to lie on a cushion or draw, then there is freedom for her to do that.  When she wants to keep holding onto a torch prop long after they are in use, honestly, no-one gives a damn.

But they never stop encouraging. The fabulous artistic director, SA, is always at ground level asking Amelia to engage and then backing right off if the response in speech or emphatic head shake translates to a resounding NO.

And when Amelia is ready, the team embrace her involvement with warmth and positive energy to burn. I don’t really have to do anything, except model what ‘joining in’ looks like, provide some Auslan interpretation and assist with the gentle coaxing.

I don’t know, do you think she likes it?

Last week provided something new: a whole session where Amelia was on board from the start of the map, not somewhere down the track after she’d walked her own road for a while.

It may have been because her Dad came with us that morning and Amelia was excited to show him this special place where we go most Fridays.

Or it could also have been because there was only one other little girl there that day who was keen to share in all the drama with her. The girl took her cushion for story time and positioned another one next to her for Amelia to occupy.

Usually, Amelia does not connect with the book reading part of the session or with the other children but on this occasion she sat next to her fellow thesp and really listened.

After a few moments she went back to sit with her Dad, her parental anchor in the circle. But her new friend looked around for her and tapped the cushion as though to say “Come back, this is your place, next to me”.

It was a sweet gesture of inclusion and after a brief hesitation Amelia did go back and take her place next to that girl who I wanted to hug for simply looking back and asking my daughter to join her. To belong.

What happens at the park, stays at the park

The calm, solitude of time spent at the park

Having a child who is deaf has mostly hardened me to the questions (well-meant and not so much) that people tend to ask in shopping centres, waiting rooms and other public spaces when the topic comes up in passing conversation.

In an earlier post, I covered some of the so-called ‘dumb’ questions that we encountered in the time following Amelia’s diagnosis.

Since then, I think I have developed a second, tougher skin that has helped to guard me against genuine offence or my own hyper-sensitive reactions.

Two years down the track from the moment we emerged from the chrysalis of one life pre-diagnosis and emerged somewhat bruised into another, I have developed ways to evade questioners when I’m not in the mood and found better ways to answer them when I am.

It really all depends on the day, which way the wind is blowing and the nature of the approach. If a person is having a good old Aussie crack at trying to understand something new, then clumsiness is certainly not a sign of bad intentions. It just means they have minimal exposure to the intricacies involved.

The keys to ‘getting it right’ are the demonstration of qualities like restraint, thoughtfulness and compassion from the questioner. Questions themselves are not the enemy – a communication started with care, that is watchful of the signs about how the questions are being received, is less likely to tread on vulnerable toes.

I’m not hanging around waiting for people to ‘get it wrong’ so I can rain blows of righteousness down on their heads. Well, I used to be, but now I’m more interested in solitude on those days when Amelia and I can just be, without questions, tests, diagnoses and labels disturbing the peace. Yes, solitude or privacy or anonymity, even when we’re in public.

So I’m not exactly sure why I was so bothered by the woman – a fellow mother – I encountered last week at the park where Amelia and I went for a run in the winter sun. But there was something different about the way she came at us, with her machine-gun mouth, poised to fire as many questions at me as she could muster before it was time to re-load.

It was, on reflection, a combination of the level of her intrusion into our hard-won solitude, her condescending tone, her incessant questions and her lack of reading of my mood – in my eyes, my voice, my body – that made me feel that enough was enough.

I’ll try to keep it short, but here’s how our meeting played out.

I was signing something to Amelia as we walked over to the swings and this woman, also with her kids at the swings, said to me, “Oh it’s really great that’s you’re teaching sign to her”.

It’s not unusual for people to remark on our use of Auslan – I understand that it is a novel sight, and to many a beautiful language to behold, so I don’t mind being asked about it.

Usually once people have chatted with me about the topic and some related things for a few minutes, they move on to the busy job of watching their own children navigate the pitfalls of the playground.

And then Amelia and I are free to return to our blissful solitude.

To this woman’s opening question, I replied, “Yes, it’s really important for us to sign with her”.

My response seemed to confuse her for a second, but I wasn’t sure why. Then her tongue tripped awkwardly over the words, “Oh right, does she have some kind of disability or difficulty…or something?”

“Um, yeah, she’s deaf, so she is bilingual – she speaks and signs”.

“Oh, right, ok, wow”.

“Yeah, I wouldn’t choose to sign with her unless it was a necessary part of her life”.

It dawned on me that she had not been asking me about sign language because she immediately associated it with deafness – as the language of the Deaf.

No, she was congratulating me because there are people out there for whom teaching ‘Baby Sign Language’ (not Auslan) to their infants is an optional luxury, not a necessity or a defining part of their child’s identity as it is for us.

That’s a new one, I thought. This was the first person not to assume that Amelia was deaf after they saw her signing. It was an odd start and it went downhill from there.

The woman then began peppering me with a barrage of questions over the next 15 minutes about the diagnosis, my feelings, behavioural problems, hearing aids, deaf primary schools, and on and on. It was more interrogation than conversation.

There were no queries about my daughter’s age, name, habits (standard park chatter), just an endless quiz about her deafness. I tried in vain to steer her away from the topic, to avoid her, but it’s a small park and there was nowhere to hide.

She also ventured a number of uninvited statements about how she imagined Amelia’s deafness had affected me, such as “Ohhh, how heartbreaking for you,” or “You poor, poor thing”. I don’t think I cut a particularly forlorn figure at the park, but what do I know?

It all went way past my personal mark of ‘too much’. It’s an invisible line, sure, but most people seem to know where it is.

My answers became increasingly brief, curt, I turned my back, anything to send the signal that the subject was closed, but she wasn’t reading me and I didn’t want to have to be more explicit. I just didn’t feel like expending the energy.

When she wasn’t speaking directly to me she was in the background loudly telling her kids all about Amelia, the deaf girl. She adopted an affected teacherly tone to say things like “Honey, do you know what DEAF is?” Then she reminded them about a story featuring a deaf turtle from a book they had at home. It was excruciating.

I just kept thinking, dear god, please make this woman go away.

Thankfully, a parent we know through Amelia’s childcare came over and started talking to me about ordinary things, which broke the park-hold the woman had on us until then. She drifted off and our privacy was restored.

I didn’t want to have to fire up and be rude by saying to her “Please don’t take this the wrong way, but we just came here to enjoy ourselves, not answer question after question about deafness and listen to you ‘educate’ your kids about my daughter like she’s some kind of ‘special’ case”.

And anyway, I don’t believe the onus was on me to point out how far she was pushing the boundaries of decent behaviour and I’ve come too far to let people like her bring out the worst in me. When I cross that line myself, it comes at a cost – giving in to anger is usually more upsetting than whatever I’m reacting to.

Throughout the conversation it seemed as though the woman was trying to prove just how ‘right on’ she was about the difference we introduced to the park when we stepped onto the tanbark that morning. “Look how tolerant I am, with all of my probing questions, I’m not shy about disability!”

Unfortunately, her tactless, dog-with-a-bone approach had the opposite effect, making me feel harassed and uncomfortable. I wasn’t upset as I might have been a few years ago but the unrelenting tentacles of irritation curled around my mind and stayed there all day (I wrote an excoriating post when I came home but it was not fit for print).

I had gone out with small intentions, which included Amelia and I maintaining our status as the unexceptional mother and daughter at the park, but the woman was determined to mark us out as something else; something reduced within the limits of her too-bold attitude to the private lives of strangers.

It’s possible I’m being too harsh, but in life you have to be guided by your own thoughts, feelings and responses. It is not for me to re-cast the interaction as something other than what it was – an unwelcome disturbance to the peace of holiday solitude.

I’m glad to say that this type of negative encounter doesn’t happen too often, if at all. Most people understand how to balance their curiosity against the need for discretion.

The ‘rules’ aren’t obvious to everyone, and I understand how tricky it can be, but it’s not that hard, is it? Just imagine how you would like to be asked about deeply personal, complex things (cautiously) and have your life commented on by someone you have never met (sensitively) and then, simply do the same for everyone you meet. Provided your baseline is a kind-hearted one, I suppose.

And always look for signs of discomfort or unease, and when in doubt, begin by saying, ‘Do you mind if I ask you about…?’ before you go hurling question Frisbees across the park when no-one asked to play.

Recommended further reading:
Facing the crowd: managing other people’s insensitivities to your disabled child by Deborah Fullwood and Peter Cronin (first published in 1986, it is still relevant today)

Of rocks and hard places

Even in harsh terrain a flower can bloom

I am reading Andrew Solomon’s brilliant Far from the Tree: Parents, Children and the Search for Identity at the moment. It’s about how families cope with having a child with a disability (mental, physical, social) and the loaded choices that sometimes result in crises of identity and domestic turbulence.

Naturally I jumped ahead to his chapter on deafness and it was, in many ways, a tough read. The stories of the families, particularly the personal accounts of the deaf children now grown up, are inspiring but often heart-breaking.

The stories describe so well the cost of the long-term battle waged around the two prevailing deaf education philosophies – ‘oralism’ (an emphasis on spoken language) and ‘manualism’ (sign language), and historical attitudes to deafness which have ranged from pride to shame.

Many of the deaf adults interviewed about growing up in this context had suffered exclusion, isolation, depression and real deprivation.

The book reaches back into the early-mid part of last century to today, proof that the tension between advocates of both approaches still exists, even if the rights of deaf people to use sign language and access deaf education in this ‘manual’ mode have significantly improved.

Solomon also tracks the splintering effect of identity that occurs with the majority of deaf children being born to hearing adults.

Something like 90% of deaf and hard of hearing children are born into families with little to no experience of deafness.

What do these unsuspecting souls know of Deaf culture? Of sign language? Of the complex mores and communication methods specific to a community they have had no exposure to, either socially or in the media? Virtually nothing.

It’s almost like some invisible hand decided to take all of the children born with a shared identity and scatter them far and wide, too far for that community to properly reach them and form cohesive bonds.

At the family level, it’s about something far more personal than that as parents try to work their way back from the shock of the unknown to some kind of understanding. They have to make hard decisions in the dark and live with them. There’s no right or wrong here.

There are, of course, many echoes of our personal story. We have no history of deafness in our family and yet we have a deaf child. We’ve been told there’s probably some genetic cause but it’s very difficult to know for sure. The ‘why’ of it is mostly a pointless exploration and offers no comfort.

Amelia can find out, when she is ready to start her own family, if she herself is carrying a recessive gene which she could pass onto her children. Already her little hands are laden with heavy baggage.

We were also faced with a choice, not of labels, but between diametrically opposed types of Early Intervention for deaf children, namely the oral language approach or a bilingual or bimodal philosophy which offers exposure to sign language, speech therapy and an introduction to deaf culture and communication. In essence, speech only, or sign and speech together.

No one held our hand through this philosophical maze, we just had to wing it and hope for the best. My family took the bilingual road which is neither high nor easy, but let me explain what led us there.

When I found out that Amelia was deaf, I had this odd feeling that part of her no longer belonged to me, but to something bigger, a hidden tradition I knew nothing about.

I also felt, almost instantly, that we needed to give her every possible avenue of communication available to her. She had lost more than two years of language, a time during which other children would have absorbed words and learned to process them. Instead, my girl had been stuck in a bubble, hearing sounds (at best) as though underwater.

Sign, speech, gesture, touch – whatever – I wanted her to have it all.

I refused to accept that sign language would hold her back in some way. This instinctive choice came up trumps because Amelia took to Auslan immediately (she’s not short of expressive gestures) and was suddenly able to translate her thoughts and feelings into something meaningful. And she could learn.

Speech, language and listening skills take much longer to develop and we just didn’t have any more time to waste. Developmental windows were closing, so we jumped on through with two languages to give Amelia the boost she so desperately needed.

I also wanted Amelia to be a part of that ‘bigger something’, that other family I suspected had at least a partial claim to her. If we were to embrace her difference I thought we could also open a door to a place where she was the same, just one of many in a crowd.

My thoughts about Amelia’s so-called ‘otherness’ were brought home to me in a bittersweet moment when my Mum and I took her to her first Early Learning Group run by our Early Intervention service.

It was terrifying, really. We entered a room where everyone seemed to know some sign language and there was a Deaf Educator, JC, co-running the sessions. How would we talk to her? My Mum and I were like rabbits caught in blinding headlights but we pushed through our sizeable fear. For Amelia.

JC was quite aware of (and probably used to) our discomfort, so she didn’t approach us directly at first. Instead, she strode confidently towards Amelia, then only two years and a few months old. Amelia was not a trusting child then and we had never been to this place before so I did not expect her to be relaxed about this approach.

I was so wrong. JC tapped Amelia softly on her arm to get her attention and signed at her to follow. Amelia held her gaze, watched her hands avidly and then followed her like she was caught in a tractor beam. I watched this from the safety of a corner and felt a curious mix of emotions wash over me.

It’s hard to explain, but I felt tears well up in my eyes at the pain of seeing Amelia bond so quickly with this stranger, the first deaf person she had ever met, and with thankfulness and relief that she had been so welcomed by one of ‘her people’.

However strange or overstated that sounds, I have witnessed the positive evidence of Amelia belonging to a culture other than her own family’s many times over.

JC became Amelia’s kinder teacher last year and they were soon inseparable, often found working together on some secret craft project or sharing a story in Auslan.

Amelia showed a clear preference for her non-verbal communication with JC. She spent very little time with the hearing teacher or even with the other children. Amelia learned a lot from JC, about how to express (and explain) herself through sign and how to touch another deaf person to get their attention.

I see the same easy bond when Amelia watches adults signing in the Cochlear Implant Clinic waiting room – there’s a spark of recognition as she watches their hands moving through the air in rapid-fire conversation. She smiles as though reassured by their presence.

When she walks into her deaf kinder class I can tell she is truly at home. Because in that room, all of the children are deaf and she is not the only one who signs. Amelia likes her mainstream kinder okay, but after a term the votes are in and she never stops asking me when she’s going back to ‘lunch kinder’ (so named because we make her lunch together and pack it in her bag).

At pick-up time, Amelia does her routine farewell to the teachers in sign and comes home to me, full of confidence and something not far from elation. Because she belongs.

It’s a great feeling to see your child settling in so well at a new kinder or into a way of being that feels right to her. But I do still feel a little wistful that she is experiencing that powerful sense of fitting in with people other than us.

On this clash between Deaf identity and family, Andrew Solomon quotes one of his deaf interviewees (Cheryl Heppner), saying: ‘Deaf people feel ownership of deaf children…I really struggle in not wanting to interfere with a parent’s right to parent, at the same time knowing that they have to accept that the child can never be one hundred percent theirs’.

I think I have accepted this idea, at least in theory, but surrendering any part of my child’s life will never be easy, no matter what the future holds. Every parent understands that.

But I hope that our choice of a bilingual education might allow us to move between both worlds, rather than having to give Amelia away to one, or hold her in another.

We chose ‘manualism’ so that Amelia could tell us straight away what she needed and also to give her a passport into the Deaf community if she decides to visit later. Her enculturation into this world is well on its way.

Amelia watches JC with rapt attention

For us, that choice sits in harmony alongside our hopes that she will learn to speak fluently too and be able to participate in the hearing world as far as she wants to.

If ever I worry about the decisions we have made on Amelia’s behalf, I remember the teenager I once spoke to about her story, which included profound deafness, cochlear implants and an intensive oral language education – she was the quintessential poster girl for oralism.

She blanched at my question about whether she identified as ‘deaf’ and was justly proud of her ability to speak and excel in the hearing world. When I said to her that Amelia was learning to sign – something she herself was just starting to try – she said, “Oh yes, give her sign, give her everything”.

As a parent, that’s really all I’m trying to do – give her everything to help her now and prepare her for later.

Because deaf children have a right to all worlds, not just deaf, not just hearing.

First name Amelia

Amelia considers the road ahead

In the months following Amelia’s diagnosis of hearing loss, I picked up a strange habit when introducing her to people we met in our daily travels. Like an involuntary verbal tick, I would call her ‘deaf’ before I said her name or anything else about her.

This new tendency was the result of many obsessive days spent reading about what the diagnosis meant. Suddenly a host of alien words had intruded on our lives and I drove myself mad trying to work them out.

At first I wasn’t sure what term to use to describe the diagnosis itself. There was the medical vocabulary: it was a sensorineural, (most likely) congenital, bilateral, moderate-severe/profound hearing loss. To the lay-person, this roughly equates to ‘nerve deafness’ in both ears from birth.

These definitions were cloaked in the mystery of a clinical world we had arrived in but did not yet understand. They were cold and impersonal but I found I could practice saying them, turn them over in my mind and get used to their presence.

The words I was really scared to speak out loud were the more commonly used descriptions like ‘hearing impaired’, ‘hard of hearing’, ‘deaf’ (people who have a physical condition of hearing loss) and ‘Deaf’ (people who use Auslan; identify as members of the signing Deaf community).

Or disability – that one was like acid on my tongue.

I tried them all on for size, testing the degree of pain they elicited in me. It only took one syllable to break me back then.

My fixation on nomenclature was really just my way to grapple with what was happening to us. Our situation felt more real (and not like some nightmare starring Max Schreck) if I could give it a name.

I settled on ‘deaf’ because ‘hearing impaired’ is regarded negatively by members of the Deaf community who prefer the terms ‘Deaf’ and ‘hard of hearing’ (and I am such a stickler for the rules).

‘Hard of hearing’ just brought forth the image of an old man straining to hear through an ancient ear trumpet. We did not yet use Auslan and had no ancestral or existing links to the Deaf community.

So in the end it was deaf with a little ‘d’ that felt about right to me.

Amelia had just turned two years old, so no-one asked her what she thought about this. She couldn’t have told us anyway because the terms that so consumed me were simply lost on her.

I am a little ashamed to admit that once I decided I was okay to call Amelia deaf to myself, I just couldn’t stop flinging the word at complete strangers, usually without necessity or context.

I was probably a little deranged by grief, but I gave little to no thought or consideration for my girl – the deaf one – and how it shaped her identity.

One day we walked into the chemist and the saleswoman leaned over the counter to look at Amelia tucked in her pram.

“Oh, she’s so sweet! Hello little girl, what’s your name?”

Like a Venus fly trap, I snapped her question in half with, “She can’t hear you, because she’s deaf…”

I said it callously, as though she should have known it just by looking at Amelia. It made the woman flustered and uncomfortable and on some sick level I was glad.

It was a perverse thing to do but I repeated this routine often with people who were new to us. It was my conversational trump card. I used it to provoke sympathy, to disconcert people, or to neutralise their judgement (she’s not naughty, she’s just deaf). One more time for the cheap seats.

What I think I was trying to do in my desperation was prove that I was not ashamed of Amelia’s deafness. I pushed it into people’s faces so they would have to deal with the fact we could not escape ourselves. I might as well have propped a sign on her pram saying ‘deaf child on board’.

For a time, I simply forgot to encourage people to see Amelia beyond the feature that was actually invisible to them – her deafness. Inadvertently, I boxed her up and labelled her because I was the one who couldn’t see past it.

Thankfully it was just a phase I was going through to deal with the shock and the grief and it didn’t last. I explained my behaviour to Amelia’s Deaf Educator, AH, and she seemed to understand what was happening and why.

She gently told me not to worry about other people and to think of Amelia and her needs first, before the deafness, before anything. That was all that mattered, not words.

The fact is I was (and am) extremely proud of Amelia’s deafness. It’s anomalous that the thing that almost destroyed me was the same thing that made her more special in my eyes. But I realise I did a huge disservice to her to have made ‘deaf’ the opening number, before people had a chance to hear other songs in Amelia’s repertoire.

There are many ways to honour that unique part of who she is, through learning Auslan and establishing relationships with deaf adults and children, without consigning her to an all-encompassing label.

In some situations it is absolutely necessary to let people know that Amelia is deaf to maximise her social interactions (background noise is too loud, don’t stand behind her and speak).

If someone asks about her hearing aids or her sign language then I am happy to go there, but there’s no reason to keep assailing people with her deafness on a regular basis.

While I have made a decision to use one word among many to describe Amelia’s hearing loss, this may not be her preference later on. In my experience, not all young people with a hearing loss identify as ‘deaf’ or even ‘hearing impaired’; it’s a complex choice based on many factors I’m only just beginning to comprehend.

One day, Amelia might tell me that she has a different way of explaining her deafness (and herself).

I have no idea what that discussion will be like, but I want to be sure to tell her that I now see her deafness as only one important part of who she is: my girl who is blonde, powerfully strong, mischievous and loves to dance even when she can’t hear any music.

When she is old enough, I also want her to watch this brilliant video posted on YouTube by Bethany, a teenage girl with a cochlear implant called ‘MUSINGS ABOUT BEING WHO I AM – Deaf or Not.’ It says so much about the limiting effects of labels we don’t choose for ourselves, the genuine pride that leads parents to insist on them and the need to take ownership of how we present ourselves as individuals to the world.

Bethany says: “So this is me. I am deaf. So guess what? I can still do anything. So why should it change your opinion of me?”

Why indeed.

[This post was re-blogged by The Limping Chicken, the UK’s independent deaf news and deaf blogs website]