Portrait of a somnolent drama queen

“All right, Mr. DeMille, I’m ready for my close-up.”

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Not drowning, waving

Amelia will go her own way

Last night I dreamt that Amelia was running ahead of me near a water’s edge I did not recognise. I was sprinting to stop her but she was too quick for me.

She was laughing, her head thrown back in a pose of delight, as she looked back in my direction. Amelia was having the time of her life; the dream version of me did not agree.

I saw it all in hazy point of view shots. My hand as it reached out and missed her as she leapt into the air, pink backpack and all, and jumped into the water feet first.

The surface of the water as I dove right in after her, face forward, frantically searching the murky depths below for a sign of her.

The topmost handle of Amelia’s backpack – the one with the mermaids on – the weight of which had pulled her down fast, so fast she was almost gone.

And there was my hand again, elongated in supernatural elasticity, stretching out to grab that handle and then, ‘Got it!’, I had it in my grasp and I pulled my little girl up with all the strength I could muster.

I pushed her onto the bank and my husband was there to hold her, to roll her over while she coughed unwanted liquid from her lungs. I ripped the backpack off her shoulders; it was over and I woke up with a start.

Sleep was hard to find again after that – the fear and anxiety of my dream was all too familiar.

Amelia is so determined to go her own way in the world that I often feel no more than a powerless onlooker.

As a parent, so much seems (and is) beyond my control. Her deafness, her now-confirmed diagnosis of Autism Spectrum Disorder.

But I was forgetting about the hope that the real world Amelia brings to my daylight hours. In the morning she came to my bedside and reached out for my hand and I pulled her up into the safety of our bed.

I put my head on her shoulder and felt consoled by the sight of her, the feel of her warm body next to me, the smell of her hair.

Amelia saved me this time, from the dark thoughts that visit me at night, that haunt me even when I am asleep. And she reminded me that nothing, no pain or problem, is ever as bad as our nightmares make them out to be.

Guess who’s coming to tea?

Amelia, tea party enthusiast (2012)

At my daughter Amelia’s deaf kindergarten, the teachers collect pictures and videos to document each child’s progress from term to term.

They’re candid observations about things like social interactions, learning skills and styles of play.

This week Amelia’s teacher showed me a video of an outdoor scene featuring my little girl and her classmates.

We had been talking about how she socialises with the other kids, particularly how she finds it difficult to join other children at play, and the teacher wanted to show me an example.

In the clip, it’s free playtime in the afternoon sun, and Amelia’s classmates are all engrossed in one activity or another.

Some are riding little bikes around a bricked path, others are messing about in the sand pit. A gang of three girls has set up an impromptu tea party under the dappled shade of a gum tree.

Most are playing in pairs, or at least displaying some sort of ‘togetherness’ or common aim, even when side-by-side.

And where is my Amelia? In this scene she is playing the lone wolf. A wolf in a red hat who is running around and around in wide, continuous circles.

There didn’t seem to be any rhyme or reason to her running at first. She’s just running, well, to run.

Her slightly awkward running style (with a little bit of Kerry Saxby-Junna in the shuffle of her feet) and steadfastly upright gait made me smile as I watched.

Then it became clear that Amelia’s initially aimless path had shifted to track the direction of the bike riding boys.

She was trailing their course, dogging their journey, and running faster and faster to catch up. They were not aware of her at all.

Amelia had ‘joined in’ their game as a tail-ender, playing with them in her singular way, maybe the only way she knows how – just slightly behind, out of shot, waiting to see what the reception to her involvement would be.

Her impassive face briefly lit up with the thrill of the chase, the way we see it come to life at home when she’s playing the Cave Troll to my Frodo Baggins (about to be skewered again), or when she’s diving under pillows to evade her ‘terrifying’ Dad-turned-monster.

As she sprinted on, my eye caught a subtle move of her head and the flick of her eyes towards the tea party corner. Amelia had clocked them, this solid clique of three, but she didn’t seem to know how to approach, let alone breach their imaginary game.

So she kept on moving away from them, but her progress had slowed with the hesitation of someone wondering what to do next. Stay the course or stop to take tea under the tree?

The video clip gave no clues as it came to an abrupt end.

It was the briefest of snapshots of Amelia at play, but it spoke volumes to me about my sweet girl, who is so often happy in her own company but also desperate (and painfully unsure how) to interact with other children.

Amelia’s teacher continued the rest of the story that wasn’t captured on film that day; about how she finally willed herself to break into the circle of that exclusive tea party.

She sharked the girls for a bit, testing the water for signs of risk and making sure not to draw attention to herself.

I see her go through this same routine on kinder mornings when she is sometimes at war with herself about whether to sit in with the bus kids gathered for breakfast. On those occasions I am there to ask her what she wants, to encourage and guide her to a place at the table.

This time there was no one to smooth the way but she took the plunge and sat herself quietly down, making no fuss and speaking not a sound.

Thankfully, the girls were untroubled by her late decision to attend without an invitation. Amelia was a tea-party-crasher, yes. But she was a polite and deferential guest and so she was welcome to stay.

I see it as a triumph of her spirit, this small story about how a girl who hasn’t begun to understand the rules of social engagement punched on through her fear to join in with such a tight group of strong personalities.

And even though Amelia is light years away from being ready to ask to join in and participate on an equal social footing with her peers, I am filled with hope that without me she will eventually find her way.

To my eyes, she cut a wistful figure in that playground, running and running to show movement and activity (and because running is just something she loves) but I could sense that she was also looking, searching for a place to fit in.

Then I was shown one more clip that pointed to an alternative Amelia, one with the potential to be the confident leader of the pack.

She was up on the playground rise, near the fence line and had marshalled that same gang of three plus one to follow her in some invented game with undeclared rules.

It seemed to have only one premise: that all should join her in a conga-line of expressive marching along the fence line for as long as playtime allowed.

Amelia didn’t speak but her hands showed, nay commanded, the way; ‘Come on, come on’, they seemed to say as she urged them on. And follow they did, every last one.

A scar is born

Sofia Helin as Saga Norén, wearing her scars with pride

I have this tiny scar on my face, just under my lip where my little girl Amelia accidentally hurled an iPad in my direction during our last summer holiday in a lakeside town.

I was half asleep, lying on the bed, so I wasn’t ready for the force of the blow; I could not defend myself as the sharp corner of the device crashed into my face, leaving a deep hole in its wake.

My hands flew up to my chin in shock, and when I removed them I saw the unmistakable red of my own blood, pouring from the wound onto my fingers, and marring the whitest of white sheets (not my own). My god there was a lot of it.

I screamed. Amelia ran.

Frantic, I ran my finger inside my mouth to make sure that my teeth were intact. My nails sought confirmation of structural safety as they travelled gingerly along my gums.

My choppers were okay; my gums were torn but I did not lose any teeth that day.

The women in the local chemist looked dubious at my claims of a close encounter with an iPad of the flying kind. Unbelievably, it was a first for them in the town. How very modern and high tech of me to present with a wound attained in such a way.

They took one look at me and sized up my predicament – band aids and steri-strips would not suffice here, only stitches would do. I was packed off to an ancient GP practicing at the medical centre around the corner.

I was seen to immediately and I thought ‘Oh no, what is this decrepit man with the shaky hands going to do to my face? I’ll walk out of here looking like Frankenstein’s monster”. So vain, so very vain.

But he was in fact a master surgeon in pensioner’s clothing. As I lay on the exam bed in his office, I glanced up to survey the official-looking papers framed there, a lifelong testament to his expertise in greater things than minor cuts and abrasions.

Three stitches later, his exceptional needle work was done. My face was swollen and numb from the solution used to dull the pain of the stitching, but at last the bleeding had abated. Outside the cool, sea-breeze was a gentle salve to my traumatised face.

Amelia didn’t make eye contact with me for 24 hours after her mighty swinging action set the events of the morning in motion. Shame and fear drove her from me.

But slowly she made her way back, drawn to the black stitches protruding from below my lip, fascinated by the sharp feel of them. I let her touch them and talked to her softly about what they were.

Emboldened by my sweet reception, she began play-acting the fateful moment that the iPad left her hands and slammed into my prone head.

As though it had happened to some other mother and daughter, Amelia mimed the story with great excitement and swashbuckling verve. The magnificent Jean-Louis Barrault would have applauded her artistry.

For me, the healing was better and more rapid than I had anticipated. With care, gums, mouth tissue and skin repair quickly and well. In time, Amelia stopped mentioning or performing the accident and I was not one to remind her.

The summer holiday rolled on and I got over it, in body and spirit. But I have this little souvenir – my tiny trail of a scar – to ponder sometimes in the mirror or when my hand strays to feel the slight indentation under my lip.

I really thought I would mind that mark, that I would resent the imperfection, but I have grown to appreciate its presence on the left side of my face.

It reminds me that in some ways my life is not what I thought or hoped that it would be. That things have happened to my family that we did not foresee and we have had to try and accept them.

But like all scars, mine is unique and has its own peculiar beauty, as do those spidery blemishes that seem to enhance the visage of that unforgettable Nordic heroine, Saga Norén from The Bridge. Her scars are like a question with no answer; they foreshadow a depth of experience, but they in no way detract.

Now that it has healed, my small scar sits in harmony alongside the other features on my face, none of which are perfect or conventional in any case. It belongs to me and it is permanent, like so many of the things that have happened to my family, to my daughter.

And yet it is not a cross to bear, just a sign that at times I have known temporary pain and suffered wounds that felt so raw in the beginning that I thought they would never heal.

As sure as the mark on my face that no-one can really see but me, I know that new injuries will also settle and be reconciled with the rest of my life and recede in their importance.

They will become a natural part of the everyday, these scars worn with secret pride in the overcoming and acceptance of a fate very much out of my hands.

Going the whole hog

Just a girl and her novelty hog

For a four-year-old with a lust for life, it was love at first sight the moment Amelia clapped her eyes on the bright pink hog mascot who was working the room at her cousin’s birthday party.

She spotted his towering porcine frame from across the restaurant, and a feverish light went on in her eyes as though candle-lit from the inside.

To me, this novelty hog looked like a reject from the puppet cast of Sesame Street – a little too grotesque, too cut-price, to ever really make it ‘where the air is free’.

But who cares what I thought of his polyester charms? Not my daughter.

Amelia careened across the room to meet him and gazed up at his curved, white tusks and incongruous sunglasses (I mean, indoors, I ask you).

She didn’t wait for a sign or a green light, she just leapt into his furry arms and held on tight. It was the embrace of long-lost love, of the hog you’ve waited for your whole life but never dared dream you’d meet on a Sunday night at Highpoint Shopping Centre.

Possessed by her need to keep him close, Amelia placed his arm over her little shoulders and they took a turn around the restaurant like a King and Queen greeting their subjects with restrained magnanimity.

The hog-King (in reality a jester) was clearly on an hourly retainer to bust some sweet dance moves for the receptive child diners. Amelia joined hands with him and twirled, moonwalked and swivelled her tiny hips in perfect time, a graceful partner in this modern ham-hock jive.

When it was time for the hog’s smoko break, my girl was bereft and sat in the hallway near the kitchen awaiting his eventual return.

I had to find a way to prevent her from searching for him in the off-restaurant space behind the ‘do not enter’ sign.

So, I broke that covenanted rule about not telling a lie, either white or black, to your child and said, “Amelia, your friend’s gone to the toilet but he’ll be back soon so please come and sit down with us at the table”.

For a moment, I thought I had broken through her Pepé Le Pew-style pursuit of the party mascot until she signed to me that she would also like to go to the toilet.

I gave Amelia the benefit of the doubt and escorted her into the cubicles. But I had been hoodwinked by a master because she dashed ahead of me and started beating on the closed toilet doors, looking for her true pig-love, and calling, “Hello? Hello?”

Good one, Mum. Lord knows what the women in the locked cubicles made of it.

I dragged her outside and explained the truth that this time she just had to wait it out. The poor hog was tired from all of his grooving and greeting and needed a well-earned breather.

This story she was prepared to accept but her eyes never left the kitchen corridor, willing him with all her steely might to return.

When the novelty hog finally reappeared, Amelia ran to him for another long hug and bless that person behind the fluffy pink costume, he did not break free until she was done.

And then they danced once more and paused to capture the moment on film, to freeze in time some joy amidst the evening chaos.

The hog lifted his thumb in mute approval and Amelia did the same – they were at one in this as they were on the dance floor and for a moment in her little girl’s heart, filled to the brim with love for a hog with no name.

What is it that shines in the night sky?

Some moons look a lot like Noel Fielding

It’s the moon, isn’t it? Or maybe it’s the stars. It’s not clear from the question, but it could be either.

Most of us instantly understand what is being asked here and can readily name at least one heavenly body we expect to see gleaming in the sky at night.

But what for us might seem like a simple question was, for my daughter Amelia, a challenging hurdle in an obstacle course of tests conducted by her psychologist, MC, over the last two Sundays to assess her for suspected autism.

Some tests, like naming random objects in pictures, assembling puzzle shapes and reasoning out visual sequences presented no problems to her at all – she sailed high over these hurdles as far as her abilities could carry her.

When her focus could be captured and held tightly before it evaporated, the alertness of her mind and her desire to learn and share lit up her face like a beacon. Like that round, shining moon in the night sky.

Other tasks frustrated her or downright eluded her grasp; more complex puzzles, increasingly abstract questions and images, or the replication of assembled blocks ‘just like’ MC had done before her were abandoned in quick time.

For the most part, Amelia’s behaviour imposed its mighty will on the proceedings. Her strategies for defending herself against the ‘tyranny’ of testing were devastatingly effective and impossible to countermand.

From the moment we walked into MC’s large and clutter-free office space, Amelia clicked into her manic mode of being. There was no shaky start leading to a calm middle with a fiery end. It was game on from the get-go.

MC had arranged a table with small chairs where she intended to sit across from my girl and enter into some controlled back and forth for her assessment. We were to sit at a larger, parallel table and stay very much in the background.

Predictably, Amelia had other ideas. There were so many examples of her need to assert complete control over this new environment (and person).

First, she selected one of the ‘adult’ chairs and moved it to the smaller table. Then, she rearranged the rest of the furniture to suit her purposes. It was the feng shui of a defiant child who will sit wherever and in whatever chair she damn well chooses.

As for our location, well, Amelia was having none of this stuff about parents playing a two-hour game of ‘keepings off’. She dragged our chairs close to hers and MC, like us every single day of our lives, just had to go with it.

The psychologist was forced to conduct her tests on the table, under it, on the floor, everywhere except where she had intended. MC quickly worked out that it’s Amelia’s world and we’re just in it.

The rules that govern this kind of assessment are highly strict. Parents are not allowed to verbally intervene or help unless under specific instruction. Questions are defined by a tightly-crafted script, designed to give the least information or hints, hoping to draw out responses that identify understanding without aid.

Sign language and gestures are also not permitted in this context so could not be used to help Amelia comprehend what was being asked of her. Nor were there attempts to use touch to catch or regain her attention, even when it was such a struggle to hold.

While I understand that cognitive testing needs to be conducted consistently (and without undue influence), I have been wondering and worrying about the efficacy of a purely verbal process like this for a bilingual deaf child with a speech delay.

It was very difficult for me to literally sit on my hands and keep my mouth shut when certain questions – things I am sure Amelia knows – were posed to her while her face was averted, in a soft voice, using a lexicon that she would not recognise.

Allow me to interpret an instruction such as ‘Amelia, build the blocks like I have done’ and I could construct meaning with key words and the accompanying sign of ‘same’ along with a strong voice and clear gestures and I am certain she would know what to do.

But there’s a big difference between knowing what to do and being prepared to do it. The very real disadvantage of a speech-only approach explains a part but not all of her refusal to participate in the tasks set for her that first day.

I could see a little switch flick inside her as soon as a question had genuinely taken her outside of her field of knowledge. Once that little circuit breaker had been ignited, Amelia escaped to a small, empty cupboard.

That’s not a metaphor; it was literally, an empty cupboard near the door that seemed to appeal immensely to her. It was safe, dark and she had already begun storing objects from the room inside it. It was the quickest creation of a makeshift comfort zone I have ever seen.

It clearly fit the security bill for her, because she spent about ten minutes of each appointment inside it. At the beginning of the second session, she walked straight into MC’s room and set up the cupboard space in preparation for its imminent use as a recovery bolt-hole.

As a place to regroup, I wish I could have climbed in too. Because it’s a weird feeling to be in an appointment where you so want your child to ‘do well’ but at the same time you want the specialist to see all of the strange and difficult behaviours that have led you to be there in the first place.

Okay, so there were plenty of low lights and we spent a lot of the time sitting awkwardly, unsure what our role was or wishing we could take a more active one, but there were some sweet moments in the mix that made me smile.

The majority of the second appointment was taken up with ‘free play’, where MC placed lots of toys around the room to watch Amelia’s activity, how she played and for how long. Then MC engaged in some one-on-one play with her to see how well she related to someone other than us.

Out of her enormous bag of tricks, MC produced a Finding Nemo bubble blowing machine and cranked it up for Amelia. It released a multitude of tiny bubbles, sending them high into the air before they popped on their way to the floor.

I watched Amelia hold her beautiful face up in welcome supplication to the generous cascade of bubbles as they dropped onto her cheeks, nose and mouth. The pleasure in her features, now open and receptive, was so powerful I just stared and drank it in. I took every last drop of her joy to sustain me for the rest of the session.

In that same appointment, she took three chairs and lined them up in a row in the window corner of the room. She ordered me and her Dad to sit while MC sat behind taking copious notes.

Then Amelia ‘took to the stage’ before us and grinned, a signal of something exciting about to commence, and belted out a heartbreaking rendition of ‘Twinkle, Twinkle, Little Star’.

She was so proud, so delighted with her performance – this child who would not sit or comply or do anything other than what she wanted – and I had to bite down hard on my bottom lip to stop myself from crying.

My husband and I are taking a great leap of faith here, placing the hopes and fears of our family in the hands of a stranger in yet another clinical setting but we have no other options available to us. We simply have to keep our minds open to the possible benefits and the answers MC might provide.

But it’s a hard road. In the end, it doesn’t matter if Amelia sang about stars ‘up above the world so high’ – there are no points for effort or heart on a standard IQ scale.

And she didn’t know the answer to the question about what shines in the night sky. I don’t think she knows what ‘shine’ is and there weren’t enough key words or signs to help her decide which celestial object to name.

But last night, while I was driving Amelia home from visiting her grandparents, she craned her neck to look out of the car window to tell me excitedly and repeatedly all about that big, glittering moon she knows so well.

Yes, she knows about night and the sky and what a moon is, just not in the right order and not always at the right time.

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)

Choose your own experience

David signs his crucial moment in Four Weddings and a Funeral (1994)

It’s not often my daughter Amelia will see her specific life experience as a deaf child reflected sensitively in the media, in books, on television or in movies. She could count the instances to date on one small hand.

Of course there is more to my girl than her deafness and I hope like me she will one day fall in love with wonderful real and imaginary hearing characters like Elizabeth Bennett, T.E. Lawrence, Sam Spade and Angel (the vampire with a soul) regardless of how far their lives diverge from her own.

It’s called having an imagination, and we think Amelia has a vivid one.

But let’s face it, there is a dearth of representation in popular culture of deaf people and their experiences, from the historical to the contemporary or the entirely fictional. If you take Helen Keller and Marlee Matlin out of the mix, it’s slim pickings indeed.

I never realised how ‘cutting-edge’ Four Weddings and a Funeral was to feature a young signing deaf man called David (played by deaf actor David Bower), who is more than incidental to the plot, until I grasped how rarely this happens in mainstream cinema.

Ever on the search for positive examples like this one to show Amelia, I was excited to come across a company called Experience Books which sells texts for deaf children and children with autism.

But they’re not just selling books, ready-made in the hope that they might mirror something about your child’s journey, they are (and the clue’s in the title) offering a rewarding experience that is both interactive and tailored to tell their unique story through words and pictures.

So, a few weeks ago Amelia and I sat down to personalise a book about her deafness and what it means in her life right now. It’s a three-step process: you build the main character (hint: she’s a rambunctious, blonde four-year-old), choose the text and create the book. Too easy.

First we selected the book’s theme, which for us was deafness (rather than autism or say, a book for siblings). Then Amelia was able to choose how she wanted her ‘avatar’ to appear, so that in the finished product she would recognise herself in the blonde hair, pale skin, dark eyes and most importantly, silver hearing aids of the main character ‘Amelia’.

Then, the website provided us with an opportunity to drill down into greater detail about the kind of hearing loss Amelia has and the type of equipment she uses to access the world of sound.

A free-text section prompted us to talk about what she wanted to say about herself – who her family is, who her friends are and the activities she loves. The nature of Amelia’s ‘self’ is somewhat enigmatic so I welcomed the chance to test how far she could talk about small things that make up her identity.

Amelia was so excited by my questions and our enterprise that she kept throwing names at me for inclusion, like all of her cousins and almost all of the kids from her deaf kindergarten class (which, in most cases, I had no idea how to spell). It was intoxicating.

We ran out of text space, but we filled in more than a few gaps about what is important to her, about what ticks the workings of her innermost clock.

Another key section of the book is on communication, and it’s great for parents who want to share some crucial aspects about what makes things difficult for their deaf child (loud noise, people talking at the same time), or how people can help (use sign language, get their attention first before speaking).

And finally, the website asked us to enter more detail about Amelia’s favourite things. So, it’s not simply about her deafness and describing what that’s like for her, it’s also about Amelia the girl who likes painting and dancing and signing with her friends.

After we finished entering all of Amelia’s characteristics and clicked ‘send’, it occurred to me that I didn’t really care what the book ending up looking like.

The experience of sitting with my daughter, jostling for space in front of the laptop as we chatted loudly about the big ticket items in her life (“we can’t fit any more names, Amelia!”), is one of my favourite moments as a parent.

Because I’m still working out the best way to be with her or how to reach her, and the opportunity to sit and talk and learn together in a relaxed way does not present itself that often.

Happily, for the purposes of this story, Amelia’s enjoyment and my bank account, the book is a winner. It’s not long and there is a typo where I managed to misspell Grandpa (Granpa is still phonetically correct, right?) but it does everything I hoped it would and more.

Amelia with the book created just for her

It offers that rare thing, a child character with a hearing loss who also wears hearing aids and does kooky, fun things like most four year olds. She lives hard and she plays hard. And has four million friends.

But it’s not just any child’s story, or an approximation of Amelia’s, it is precisely HERS, with the right language to define her hearing loss, the colour of her aids worn in both ears and some of the things that I want people to understand about her deafness before she can grasp them herself.

I don’t expect this degree of looking-glass reflection every time Amelia opens a book or switches on the television. If you constantly search for yourself in the stories chosen by a media beyond your control you will inevitably be disappointed.

Deafness and the lives of deaf people are a marginal interest in that mainstream world, so you have to grab every representation you can find and shine a big light on it.

Like this book called ‘All About Amelia’ which for other families is just a mouse-click away from telling the story of their deaf child in bold colours and important words to cherish for a lifetime.