Desperately seeking ‘s’

HERE are Amelia and P, her wonderful speech pathologist, searching for that elusive ‘s’ sound. The mechanics of just one little sound like an ‘s’ can take years for a deaf child like Amelia to learn and master. It’s too soft, too secretive, for her ears to pick up clearly so she needs a lot of support to work it out.

I sit and watch while they practice making repetitive, sibilant, snake sounds. P elongates the consonant, drawing it out in a long, slow hiss at the start or end of a word. Or just by itself. Everything has to be emphasised so that Amelia can identify the sound and start to join the dots on how our mouth, breath and tongue collaborate to form a simple ‘s’.

So they sit together on a Tuesday morning and they hiss, and laugh and hold each others hands to feel the breath, the noise, made by each other’s mouths.They are gorgeous to witness, because there’s so much affection sitting alongside the toil.

Amelia’s ‘s’ is thinner, more tentative than P’s. She’s still not sure of herself and when P adds in tricky little vowel combinations, sometimes the ‘s’ disappears, falling away for a moment. But they’ll pick it up again next Tuesday when they meet.

And Amelia will retain a little bit more each time until one day, maybe this year, Amelia will unlock the secret of that slippery little ‘s’.

 

Eyes wide shut

Amelia ‘papping’ the Pa-parazzi (get it)

WHEN I look at my daughter Amelia, I see lots of things. I see a wonderfully healthy, milky-skinned towhead with dark, dark eyes.

My eyes rest on her all-terrain body some days and I conjure up images of her in a field, pausing from her work to glance at the sky, the sun, like a stocky Russian peasant, built to withstand the elements.

Come rain, hail or shine, Amelia was made differently to most people, but man was she made to last.

Through my eyes, the most subjective of prisms, she is the most beautiful child I have ever seen. If I look at her for an hour, a month, a year, there will never be enough time to really see her.

I love to look at Amelia’s blonde hair falling in rolling, lazy waves down her back. Tucked behind her ears, some days it’s easier to see that she is wearing hearing aids. To see the physical sign of an internal part of her that doesn’t work the way it should.

Her autism is not so obvious to the naked eye. It’s not etched on her skin or reflected in some mechanical appendage that helps her to think or feel. Amelia doesn’t wear a t-shirt reclaiming the word ‘Aspie’.

You can’t see her autism in obvious ways, but I always know it’s there. I see it in her face sometimes, when her gaze drops below mine, and try as I might to regain her attention, she’s quietly slipped off to some interior room, far from me and my ever-prying eyes.

No matter what the signs – violent temper, crushing anxiety, rampant hoarding – I see autism but I still see Amelia. I never lose sight of her, working so hard to push her little barrow uphill. I see all that she is and I feel I truly know her. I know her and I understand.

Amelia has many people in her life who look past her ‘special needs’ and see only what is genuinely special. What is unique about her. The madcap sense of fun, the tenderness, the infectious lust for life.

What they see is mirrored in my own eyes and in my heart. That mirroring gives me strength and so much joy.

Yet now and then in our travels I am forced to view Amelia the way that other people sometimes do and it makes me turn my face away. I can’t bear the sting of their unforgiving eyes boring holes of judgement into her. Into me.

When she is suddenly, inexplicably loud or clumsy or different – incongruous – in a public space, I feel strangers’ eyes flick up and cast their reductive light over her. Mouths curl up in a mute grimace of distaste. I read their looks and expressions and interpret the words left unsaid.

‘Oh, what a weird child. Look at the naughty child. What on earth is wrong with that child?’

And who am I? It’s simple: I’m the bad parent.

I hate those staring, ignorant eyes because for a second I step outside myself and I judge Amelia too. In that moment I see only her flaws, the things that cannot be contained or controlled. And it hurts my heart.

My inner voice pleads with her, ‘Please won’t you just be calm? Why can’t you walk properly? Stop yelling, just stop it!’

‘Why can’t you just be normal.’

Then there are the people who don’t see Amelia at all, who have trained themselves not to see what is different about her and to try to understand. They focus their eyes on the wall above her head or on the easy going child instead.

They ignore her and I despise them too.

Because they looked at Amelia, but they did not really see her. They saw only gaps and lack and the spaces in-between where a different child might be. And they decided things about her that are only a tiny fraction of who she is. Who she will grow up to be.

I’m not blind to the hardships looming up behind Amelia like a shadow she can’t shake. I know she is sometimes rough and strange and hard to take. I know that because I see how being around Amelia makes some people feel: uncomfortable, nervous, frustrated.

It’s written in their eyes.

But I can’t let those looks and the thoughts that sit behind them slip under my guard too much. They strike me in my nerve centre, and I absorb little shocks and bouts of pain, but they do not defeat me. They could never.

For me, there is always great solace to be found in looking up and seeing Amelia again, maybe running down a path to meet me after time spent apart. She throws her glorious head back and yells my name at the sky and I see only beauty and all that is right.

There are no shadows here, save the ones cast by the sun, warming the head of my sweet peasant girl with her golden hair and those dark, dark, eyes.

Awake is the new sleep

Sleeping soundly with 'stuff'.

Sleeping soundly with stacks of ‘stuff’.

IT’S DAWN, barely a trace of sunshine coming through the windows, and already I can hear her crashing around in her room.

The Kraken, also known as my six-year-old daughter Amelia, has awoken.

I know this because I can hear her clumsy, elephant-like footfalls pounding into the floorboards. Amelia is awake and the whole world must know it.

It would be churlish to complain because she is deaf and so has no earthly idea how loud she is, as she moves around gathering her numerous comfort items from the bed for transportation into the lounge room.

This is the routine for her, everyday, my girl who hears little of note without hearing aids and is well and truly on the autism spectrum.

Amelia uses various collective nouns to describe her personal treasures. They are her ‘things’, or sometimes, her ‘stuff’.

“Where is my stuff Mummy? I need my THINGS!”

I always know where her stuff is because it is never far from her side. Amelia burrows these objects into her bed covers at night and I have to creep in after lights out to extract pencils from her hair and uncurl sweaty fingers from straws, tape, glue-sticks. The lot.

For a young child with autism, the ‘things’ have a deep meaning that is mostly beyond our reach. But what we know for sure is that they are absolutely vital to our little magpie’s sense of security, her sense of self.

Amelia clings to these things like a lifeline to some magical source of strength and energy known only to her. With them, she is safe.

And so, each morning, this curious set of bits and bobs is dragged from her room and deposited next to her on the couch. Amelia is now ready at 5am, or 6 if we’re fortunate, to kick off her day.

It’s then that I feel her presence in the doorway to our room. She hovers there uncertainly, watching for movement, for signs of waking life.

I resist for a minute but I can’t help but lift my weary arm to offer her a tiny wave – words cannot travel the distance to my beautiful deaf child but one gesture shows her the way is clear to approach.

And with this green light Amelia runs to my bedside, full pelt, to grasp my hand and throw her body across mine.

It’s easily my favourite time of day, this part when our bodies are so close and her face turns to my cheek to plant big, passionate smooches there. And if I’m very lucky, she might reach up to softly stroke my face with her hand.

Her sometimes-rough hands become gentle in the morning light.

I am barely awake but the smell of her, the feel of her, is everything to me in that moment.

Amelia is up and now so am I, and no matter what the hour, no matter how sleepless the night, and no matter how many ‘things’ I’ll be carting around for the rest of the day, in this perfect moment my heart is filled only with happiness.

[I wrote this piece yesterday after a wonderful day spent in a Gunnas Writing Masterclass with the incomparable Catherine Deveny. The task was to send her a piece written between 10am and 10pm on the day. ‘But how? I’m going straight out to dinner and to see a show. I won’t be able to do it’. But no excuses would do. So I texted my husband the simple words…’Bring your laptop’. Later, parked in our car on a city street, I sat with the laptop on my knee and frantically tapped out this piece from the notes I’d scrawled in the masterclass. I had to do it – would never forgive myself if I didn’t – and so I did. I emailed it to Catherine, typos and all, and felt a great sense of satisfaction. The feedback and support from Catherine the next day was absolutely thrilling and so that mad writing session in my car felt even more worthwhile. It was such a great experience that I’m sure any aspiring writer would enjoy. Plus, Catherine wears amazing shoes with little musical notes engraved on the soles. So there’s that too.]

How do I love thee? Let me count the ways

Taking a spin with a true dancing queen

Taking a spin with a true dancing queen

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

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

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

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

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

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

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

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

My Amelia in safe hands

My Amelia in safe hands

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

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

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

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

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

The happiest of times at Rye with our Nan

The happiest of times at Rye with our Nan

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

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

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

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

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

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

Channelling Casablanca

The beginning of a beautiful friendship.

Amelia & E: the beginning of a beautiful friendship

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

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

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

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

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

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

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

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

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

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

Why ever not?

L’amour actually

Happiness incarnate (first day of school, 2014)

Happiness incarnate (first day of school, 2014)

MY FIVE-year-old Amelia loves school the way that Pepé Le Pew had a case of deep, un-PC l’amour for Penelope Pussycat in the old Looney Tunes cartoons.

It’s a profound, single-minded passion, and like Pepé, Amelia will brook no barriers (in his case, not even a wrongly identified species) between herself and her love for a paramour called Primary School.

Even on mornings when she has spent an entire vomit-punctuated night on the tiles with her weary head draped over a bucket, Amelia will fight hard for her right to go to school.

As soon as I start to say that we might have to pull the pin on the day’s play, she fixes me with a look of desperation, somewhere between sorrow and defiance, and cries, “No Mum! I WANT TO GO TO SCHOOL!’

I have to sneak into the kitchen and quietly call the office to report her impending absence, all the while aware that my school-obsessed child is in her room struggling manfully into her uniform between bouts of wretching, coughing and sneezing.

I don’t know whether to laugh or cry, which just about sums up my experience of parenting such a wild, enigmatic girl.

Eventually Amelia accepts her lot and melds into the couch as she must, but not before many tears have been shed over her tragic separation from the place that gives her so much happiness, so much purpose. So much confidence.

On its own, it’s not such a terrible problem to have, is it? A child who will get ready for school in the blink of an eye and stand at attention by the door waiting for her bus ride, a full 15 minutes before it is due to arrive.

A child who will rush with you from a morning appointment, never tarrying, to make sure she makes it to school before the end of ‘brain gym’ or to the start of music, dance or Auslan; just a few of the classes that have so inspired her mind this year.

But there is one big drawback to all this school time ardour that has the potential to make life very tricky for me.

Equal to Amelia’s adoration of school is her infinite regard for routine. Clearly these loves go hand-in-hand with each other, as school is the central experience in her life that is founded on a strict timetable and the all important ‘knowing what comes next’.

There’s nothing that freaks my ASD child out more than not knowing what is coming next. In the next minute, next hour, week, or month.

We spend our lives trying to quell Amelia’s anxieties through repeated information about timeframes, plans and some form of schedule, but life beyond school is never as predictable as she would like.

Let me tell you, it is downright exhausting to live with someone who never stops asking, ‘and then what? And then what? AND THEN WHAT?!’

So, imagine you are the parent of this rigid, school-loving little person and you realise you have to INTERRUPT THE MONDAY ROUTINE HALF WAY THROUGH SCHOOL TO GO TO AN OCCUPATIONAL THERAPY APPOINTMENT EVERY TWO WEEKS.

Sorry to shout, but only caps would do to express my fear of interrupting Amelia’s weekly routine – of getting between her and her beloved school – and living to tell the tale.

Amelia has grown used to going to speech therapy sessions and other medical check-ups in the morning and then heading on to school. She doesn’t love it, but she’ll tolerate the anomaly. It has a sequential flow she can understand. Plus the end destination is school.

This new arrangement was going to involve me attending school on a Monday for our regular on-site speech session with the lovely CN, and then altering the usual pattern of things by taking Amelia to see her OT. By the end there’d be little time to go back to school so it would make sense to go straight home.

‘Maybe it’ll be ok…?’, I thought with fake optimism.

But a full week before the first appointment, Amelia turned to me out of the blue and declared, ‘No OT on Monday, Mum. I don’t like it. We do speech then I stay at school. Go home on the bus’.

She could not have been clearer about her feelings. I didn’t say too much in case I upset her even more, but I had a familiar sinking feeling about how day one of this change in routine was going to pan out.

On the morning of the new Monday world order, all was going well until speech wrapped up and I turned to Amelia and said, ‘OK, it’s time to go and see your OT now, Meels’. Yeah, right.

It was like she’d been fired out of a cannon, such was Amelia’s sudden and violent desire to escape me and the dreaded idea of leaving school that day. Sling-shot like, she flung her body out of the room and into the school foyer, screaming loud protestations as she went.

I chased after her and CN was hot on my heels. Amelia had sprinted through the foyer and was close to the hallway that led back to her beloved classroom. I did my best to stop her without being overly physical but she was already yelling the school down.

She was NOT going to go gently into that good car park with me, no matter how much I cajoled her or made rash promises of coinage, chocolate cake or park visits on the way home.

Last year, without the insight into the ASD behaviours that drive my child’s engine, I might have tried to drag her with me, force the issue, make her do what I wanted until we collapsed in a tear-soaked heap in one of the many public spaces across Melbourne to witness our mutual humiliation.

Now, I am much quicker to accept a situation like this on its immediate merits, and back off if backing off is required. I looked at Amelia’s stricken face, her sweaty brow, heard the panic in her screams and summed it all up in a matter of seconds.

Turning to CN, who was a supportive presence by my side (sometimes you want people to flee the scene of a meltdown and leave you, this was not one of those days), I shrugged and said, ‘It’s not going to happen today, is it?’ She could only agree.

The brilliant simplicity of a visual schedule

The brilliant simplicity of a visual schedule

And though my plans had failed for the moment, CN chimed in straight away with an idea that was brilliant in its simplicity. She would create a tailor-made visual schedule (see picture) to use on the Mondays when Amelia was due to see her OT.

CN would create one for us to use at home with cards depicting images or photos of things like, ‘bus’, ‘school’, ‘speech session’, ‘OT appointment’, and so on. She would also keep an identical copy at school and spend time during the week talking it over with Amelia.

Amelia’s amazing teacher, PR, was also involved in the planning and offered to discuss the Monday routine with her in class and normalise it as far as possible.

My contribution was to offer to take Amelia back to school after the OT session, even if it was for just an hour, so that she could finish out the day and come home on the bus, restoring some kind of lost balance to her schedule.

It sounds pretty straightforward, but as soon as these strategies were put in place we saw an immediate improvement. With greater visual explanations of what was happening and some time to process the change, Amelia was far more open to leaving the school with me the next time around.

We finished speech, went along to see her OT for a cooperative and happy session and made it back to school for the last activity of the day. The drop off was a bit fraught, but Rome wasn’t built in a day and changes to Amelia’s routine were not going to be solved overnight.

The next fortnight ticked over and I arrived at Amelia’s class to collect her for speech. Her teacher pulled her in close and re-explained what would be happening next.

She suggested that this time when I brought her back to school, Amelia might like to walk back from the front office to class by herself, like a big girl. Like she does in the mornings with the class roll. Amelia nodded in silent but relaxed agreement.

Every two weeks, CN, PR and I were like a crack squad, making tiny but crucial refinements to ‘Plan: Get Amelia to the OT and Back’ and our efforts were paying off. I can’t thank them enough for their intuition, care and support.

When I at last took Amelia back to school, she skipped inside without stress or fear. I gave her a soft hug and said, ‘OK chicken, it’s time for you to go back to class now. All by yourself, like a big girl’.

She smiled at me and the expression stretched wide across her countenance like the brightest rainbow in the sky. It held all the colours of acceptance and shades of sincere thanks for delivering her back into the warm bosom of school.

Because Amelia loves that place like I love Marlon Brando and potato chips, or indeed like Marlon himself loved potato chips; truly, madly and without regret.

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.

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 Jem take their friendship to the next level.

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.