Rock and roll hearing test

It’s alright, she was born in a cross-fire hurricane

Just when I think I have this parenting game sussed and my daughter Amelia all worked out, something remarkable happens to surprise me and put me back in my assumptive box.

Every eight weeks or so, Amelia has to have her hearing tested to make sure her loss is stable, that her ears are healthy and her aids are in tip-top shape.

Over the last few years since her deafness was diagnosed, she has had so many hearing tests and her tolerance for them has waxed and waned like the phases of the moon.

Sometimes she’s raring to go and happy to play most of the games set up to drill her into a cooperative subject who can provide accurate responses. I can see that her understanding of the testing and what is required of her is developing all the time.

Yet there are still parts of these appointments that Amelia is unlikely to submit to willingly, if at all.

I can’t remember her ever allowing the bone conduction headphones (for testing the sensitivity of the cochlea via a small vibrator on the mastoid bone behind the ear) to be put onto her head.

And it’s been a really long time since she was prepared to sit and have her ears examined for wax, fluid or any other obstructive nasties.

This resistance makes it hard for her two audiologists, IS and LB, to complete and verify their tests, but you can’t force a bucking bronco to hold her head still if she doesn’t want to. And mostly, she really doesn’t want to.

Each time we try a little more, testing the waters with tentative hands, waiting for the right temperature and Amelia’s attitude to improve, which it has to a large extent in two and a half years.

It is now pretty common to see my girl sitting for 20 or so minutes wearing her favoured big, soft headphones, happily completing her hearing assignment.

It’s just all of that ‘other’ stuff where the examination gets a bit more up close and personal that she struggles to comply.

So last week we dutifully trudged along to our local Australian Hearing office, Amelia with her pink bag filled with ‘special’ objects, and me clutching realistic expectations about what we would achieve that day.

I even took my Mum with me like some kind of talismanic good luck charm (she’s a little bit Irish, optimistic and pint-sized so there’s a whiff of the Leprechaun about her…).

My handy motto for these outings goes something like: never go into a hearing test with inflated hopes because you will get BURNED. Cheery, isn’t it?

I needn’t have worried.

Amelia strode into the testing booth, and if she could have, she would have said, “Pipe down everyone, it’s BUSINESS TIME,” because that child as good as rolled up her sleeves and bashed out the best damned hearing test I have ever seen.

She was a like a surgeon in there, asking for the requisite implements to get the job done right. Without hesitation, she took off her aids and handed them to the trusted IS for safekeeping.

Got my headphones? Check. Marble game ready? Then let’s do this thing.

LB was our booth DJ, running the sound mix for Amelia to hear (or not). I wore headphones too (as did my lucky charm) so I couldn’t hear anything but I sat at the little table and watched every movement as Amelia slotted marbles home when she had registered a sound.

I was utterly spellbound as I observed her on this day because she was so very serious, so determined to get the job of testing done well. Her sweet, round face took on a pose of solemn concentration, even disdain, as she selected each marble with careful consideration and calmly waited to slot it into the box hole.

There was something so intense and wonderful about it, as though Amelia had morphed into a mini-Kasparov playing a high-stakes game of chess on the world stage.

That’s how it seemed to me, like she’d been in training for this big day and she was ready to give it her all. No interruptions, please.

Amelia’s powerhouse performance of total focus was inadvertently hilarious too – little people taking themselves seriously so often are. Many times IS and I had to stifle our giggles in case our facial expressions distracted her from the end game. But she never flinched from the process, not once.

When the main test was over, the audiologists (emboldened by Amelia’s newfound patience), decided to have a go at using the dreaded bone conduction headphones. The never-before-worn ones. Those.

My eyes opened wide in shock as I saw her dip her head in deference to them, her great testing foe, allowing IS to fit and re-fit them when they needed an adjustment. Unbelievable.

Who the hell is this child? I tell you my skin was buzzing from the excitement of it all. I wanted to sit on my hands to hide from Amelia my desire to start madly applauding her efforts. I thought, she’ll see the pleasure on my face and fling those hateful headphones at the wall.

But no. The test went on and on. Anxiety-inducing ear check-up, you say? No problemo. She smashed it out of the park. Even when IS had to swap fittings on the tympanometry machine or in any way pause during the exam (which usually means DEATH to all who come at her), Amelia just sat quietly and allowed it all to happen to her.

The most inflexible child in the world, with a mother prone to overstatement (tick), just sat like a total BOSS. It was one of the happiest afternoons of my life, I am not ashamed to say.

Because it means so much to see Amelia getting better at tackling the little hurdles she will have to scale for the rest of her life. Part of what has helped is the visits Australian Hearing make regularly to her deaf kindergarten.

She gets to see other children having the same examinations and the habitual check-ups are serving to desensitise her to the endless ear prodding. And Amelia’s getting older so she’s learning how to cope with certain situations as she grows into herself.

We don’t get to do a lot of ‘normal’ family things with great ease, like go to the movies, the zoo, for long walks, have coffee or dinner out and so on. That’s okay, we are finding other ways to work some fun and release in amongst the grind of daily life.

But in our world, where tests are at least as common as park outings, it’s important to feel as though they are a success, or there is at least progress towards improvement each time.

So when you witness a five-star, rock and roll triumph like I did on Friday, you can sit on your hands and stifle giggles, but you won’t be able to hide the joy shining out from your eyes. Nor should you ever try.

How to read lips and influence detectives

Lund: the greatest fashion crimes cannot be concealed

There’s a pivotal scene that occurs deep into season one of the spell-binding TV crime series, The Killing (please assume that I will only EVER be referring to the Danish original, not the redundant American remake).

The central murder investigation has stalled, and not for the first time, the indefatigable DI Sarah Lund is chasing another break in the case.

The brilliance of Lund’s finely-tuned skills of detection lies in her ability to see meaning in what others too easily overlook. That tiny clue or whisper of a lead – like a detail in a photograph that less intuitive detectives fail to recognise as a key to catching the killer.

Don’t let the fashion crimes she commits daily via a line-up of unspeakable woollen jumpers fool you. Lund, like the iconic DCI Jane Tennison before her, is the best person to see the toughest case through to its bitter end because nothing else matters more to her than a result.

Not disintegrating personal relationships (with her son, fiancé, mother), the needs of her partner Jan, or even her own safety and welfare. She’ll sleep when she’s dead or the crime is solved, whichever comes first.

But even the dogged Dane finds herself stumped again and again in the course of this labyrinthine mystery that has more red herrings than the Isle of Man (and that’s like, a lot).

In episode 16 of 20, an anonymous source sends Lund a previously missing piece of evidence – some CCTV footage which shows Nanna, the murdered teenage girl talking to her former lover, the politician Holck.

By this stage, Holck is thought (with good reason) to be the murderer and the case is thought to be closed.

The recording was captured at Copenhagen City Hall on the last night of Nanna’s life. The exchange is clearly intense but without audio it is difficult to really know what happened between them.

Again, it is Lund who looks more closely than others at the signs beyond the surface (and sound), even when her partner Jan tells her, “It doesn’t give us anything we didn’t already know”.  To him, it looks like an obvious meeting where keys and words are exchanged and a rendezvous is planned for later in the evening.

To this, Lund replies, “You didn’t look properly…they don’t agree on anything”. She shows Jan the tape again. She sees unhappiness etched into Holck’s face – why would he be so sad if Nanna had agreed to see him again?

It is a crucial question in the context of the investigation, but Lund is not equipped to de-code the messages she thinks the video contains, and must recruit help from outside the narrow confines of the police department.

Realising there is still something rotten in Denmark, she goes rogue (again) by taking the tape to a factory that employs deaf staff in the hope that someone might be able to unlock Nanna and Holck’s conversation through the art of lip-reading.

The Killing makes sure to point out that lip-reading is not some mysterious birth right common to all deaf people. The accuracy of the ‘reader’ lies in a combination of factors, like the speaker’s clarity of expression and how well-lit their face and environment is, or how much exposure the deaf person has had to speech sounds, say in earlier life or through hearing aids.

As the factory foreman tells Lund: “Many believe that all deaf people are good at lip reading. But that’s not so. Even the best ones can only read at most one third with any accuracy. And it’s a vital precondition that they know the subject. But if anyone can do it I think Ditte can”.

The arrival of the deaf character, Ditte, in the story made me sit up with sudden excitement, because it is so very rare to encounter ANY deaf characters in television, let alone one who is suddenly so important to the plot. And I really wanted Lund’s shot in the dark to hit its target.

Straight away I felt sure that she would be in good hands with The Killing. It wasn’t setting her up as some kind of soothsayer or her particular skill as a supernatural power to be exploited for dramatic gain.

It’s a Danish television series after all, and subtlety is everything.

But it was allowing for a space in which Ditte’s talent would justly be seen as unique and absolutely necessary in the absence of others able to translate the evidence without sound.

The young deaf woman quickly marks herself as a sharp, perceptive character and at least a match for Lund herself. She is not about to be fooled by the DI’s pretence that she is not acting alone. Ditte asks to see some police ID which Lund claims to have forgotten; Lund averts her eyes, trying to deflect the lie.

Over the next few minutes, Ditte obligingly watches the grainy CCTV footage and signs her translation to the foreman who tells Lund what it all means. She provides the detective with the new information she so desperately seeks.

Lund’s hunch about the encounter is spot on – the relationship is indeed over and there are no plans to meet later – but Ditte’s superior lip-reading uncovers another vital detail that has been hidden until now.

It is a missing link in the chain of evidence and it busts the case wide open, leading to other lost clues and finally, the real killer (I realise that the series is a few years old now but I’ll refrain from spoiling the ending for people yet to see it).

But Ditte does far more than just read the lips of the people talking on screen, she also sees signs of obfuscation and dishonesty in their body language and facial expression. In the things they don’t say. She seizes on a critical moment of deceit from Nanna, betrayed by the subject’s “wandering eyes”.

“Just like when you told me you’d forgotten your police ID and you said this wasn’t very important”, Ditte says to Lund with a smile. She’s not being smug for catching the DI out, it’s just a fact that she immediately spotted duplicity in Lund too.

It’s only a short scene in a very long, complex series, but it stands out as a compelling introduction to a deaf character whose gift for lip-reading is given wonderful prominence in the narrative.

There’s nothing tokenistic or melodramatic about her appearance. Ditte is a deaf woman who has developed a remarkable aptitude for lip-reading and is simply the only person with the resources to shed new light on a dead-end case.

Her skills are rooted in reality, in the way we communicate things about ourselves through speech, but also in unconscious ways, with our eyes, hands and bodies.

And for one lovely moment, Ditte gets to outwit the heroic Lund, and even the shrewdest hearing characters can’t manage to do that.

The symbiosis of moon and moth

The Moth and The Moon (©Lisa Falzon)

In the phase of this burdened moon I see myself
Peering up with weary eyes at her, seeking respite
From her flight across endless night skies

She’s part moth –
An insect I fear like the blackness of death
Come to catch me when I least suspect

But her wings are soft as downy velvet
Soft as those deep brown eyes that watch
And regard the dark with melancholic grace

And though her small body brings much weight
To my rounded back and the orb of my face
It is the moth’s rightful place to take rest on me

On this moon, with its life-giving light.

Because in the loving curl of her tiny hand
And the upward bend of her too-pale legs
I feel her need for the shielding form of the moon

So when the stars blur her eyes to the path ahead
Or the fatigue in her delicate wings and her mind
Makes it unbearable to keep soaring on alone

The moon will always be there to guide the way
From its predictable station in the heavens above
And onwards, to the tender space of home.

Senses working overtime

Defence against the senses (and my one chance to reference XTC)

Finding out that your child has an autism spectrum disorder (ASD) is a bit like reading the last page first in an Agatha Christie murder-mystery.

Through the big reveal, you might learn ‘who dunnit’ from Hercule Poirot or Miss Marple, but you can only guess at the what, how or why of the events leading up to that moment.

By this, I’m not referring to the missing pages of cause and effect that remain hidden behind my daughter Amelia’s latest diagnosis.

To me, the pursuit of causation seems like a completely fruitless and time-wasting preoccupation when emotional and intellectual energies need to be spent in much more constructive (and urgent) ways.

Searching for some random reason to explain what caused Amelia to be born with a disorder that some refer to as ‘atypical’ neurology, is about as helpful as locating a needle in a haystack only to find that the eye has rusted over and you have no cotton to thread anyway. And you really hate sewing.

What I mean is that we have an answer to one big question (is it autism?), but we are no closer to understanding the associated behaviours, to knowing why our daughter finds aspects of her life so difficult, or how we can help to ease her passage through life.

The bigger mystery than autism, which was not really an unexpected narrative twist for us (though no less painful), is the triggers for the autistic behaviours, like her meltdowns and hyperactivity.

But there are clues. You don’t have to be as clever as Poirot (or have such an impressive moustache) to read signs of significance in the way Amelia acts in certain situations and not in others to begin to draw some amateur sleuth conclusions.

Take, for example, her almost textbook behaviour as the ‘compliant child’ when she attends kindergarten across three days of the week. She is able to follow routines, generally does what is asked of her without complaint, actively participates in activities set up for her and does not act out at all.

Amelia the kinder-goer is the very model of a cooperative, well-behaved and calm child. That is not to say that her personality is subsumed by this conformist way of being. She’s not a robot; her independent spirit is detectable beneath the surface, but it seldom comes out to disrupt play.

It is simply that she is working very hard to observe and puzzle out the rules of the kinder game. I think there is security for her in knowing what to expect of this environment and what kind of behaviours are expected of her. Following an explicit routine and the lead of others provides her with a perfect map for fitting in.

Sometimes Amelia’s teachers spot her in a corner, silently acting out play she has seen performed by other children, or she signs conversations to herself. It’s like a dress rehearsal before she decides to step onto the real life stage of social interaction.

This mostly compliant version of Amelia is not, however, the child that I take charge of at the end of her kinder days. The moment I pick her up she switches gear into full-throttle girl, almost like the sight of me or the touch of my hand releases a pressure-valve inside of her.

She throws off her cloak of flexibility, of quiet observance and obedience and lets her wild hair down in the carpark.

It’s a battle to get her to notice, let alone watch out for, the buses, cars and people as she dashes ahead of me, heading for the two giant volcanic rocks that reside in the garden near the carpark. Her hometime ritual – and it is the same everytime – sees her scale each one and leap to the ground before we make it to the car.

Ready

Set

Go!

More than half the time, our journey home will be punctuated by an epic screaming fit in the back of the car. On the surface, the spark that lights these fiery outbursts is my failing to ‘get right’ something that Amelia wants to tell or ask me, like naming an object for her that she can see (but I can’t), interpreting a hard-to-understand question or retrieving a toy that has fallen beyond her reach (I prefer a ‘two-hands-on-the-wheel’ approach to driving as I don’t want us to die).

It’s a miracle we haven’t crashed many times over, but I’ve become quite skilled at blocking out the resultant shouting and flailing from the backseat and dodging the toy missiles aimed at me in the front. Amelia is a Jonty Rhodes in the making, you know, if the wicket is my head.

Sometimes the afternoon will continue in this upsetting vein, as her rage spills from the car and into the house until we’re both emotionally spent.

But what’s really going on here? I used to think the X-factor was all me, the ‘bad’ mother. I knew how well-behaved and engaged Amelia could be when I was absent, so naturally I associated her meltdowns with my way of parenting her.

Now, I’m beginning to see things differently. Ellen Notbohm (mother of sons with autism and ADHD) writes that for many children on the autism spectrum, sensory perceptions are disordered and can become overstimulated in certain situations.

These children can be deeply sensitive to the ordinary sights, sounds and sensations of daily life and feel under siege in environments where their senses are likely to become overloaded.

Bright lights, loud music, pungent smells, certain textures on the skin, all can combine to push the autistic child over the edge; it’s just too much sensory stimulation for their brains to sort and filter.

Imagine the impact of this often stressful way of receiving signals from the world, and then picture Amelia at kinder, a setting filled with competing stimuli and demands, where she spends between six-eight hours at a stretch.

It is remarkable to me that she is able to cope so well with these days, to try and understand what the rules are, figure out how to behave and to remain composed while her senses are working overtime.

Amelia’s paediatrician, KS, offered further insights into just how great a feat it is for her not to unravel during the kinder day. Because she is deaf, Amelia’s brain is already highly taxed by the effort to listen, hear and translate the sounds coming at her through her hearing aids.

Despite her deafness, she seems peculiarly, but not uncommonly sensitive to certain loud sounds. Amelia has started to say “too loud” and hold her hands over her ears when music blasts out of the PA at kinder.

Our one disastrous attempt to take her to a cinema had to be abandoned quickly. The music was so intensely loud and she couldn’t stand it, tearing her hearing aids out to find some relief. That’ll teach me.

It pays not to assume that a deaf child cannot be hypersensitive to sounds of a certain pitch or frequency, especially if autism is in the neurological mix.

With these new ways of understanding just how difficult everyday life can be for Amelia, it is no wonder that when she is released from her kinder day and the pressure to comply and cope with the situation, that a meltdown is so often the result.

It’s like that feeling you get when you come home from work and you close the door behind you, kick your shoes off and expel the effort of the day from your lungs. Home is a sanctuary, and you don’t have to pretend to be polite or obliging or anything other than your true self.

Again, our paediatrician gave us some reassuring advice on this score. She told us that it is precisely because Amelia feels so safe with us, so loved and protected, that she can exhibit her most challenging behaviours without fear of the consequences.

We provide the sanctuary for her to kick her heavy shoes off, and hopefully duck at the right moment should they fly towards our heads.

Now we understand a little bit more about the potential impact of specific situations on Amelia’s behaviour, it is important to be mindful about just how intensely she’s working to defend herself – either through detachment or anger – against a sensory chaos that is beyond her control.

The mystery might be incomplete, but we take this emerging knowledge about our daughter as a reminder to be ever-compassionate for her struggles, even on the toughest day in the hardest week.

Because the tiniest hint or evidence of Amelia’s need and love for us, even when her hands and voice seem to push us away, is greater than any big reveal delivered to us on the final page.

On being brave like Coraline

“Being brave doesn’t mean you aren’t scared. Being brave means you are scared, really scared, badly scared, and you do the right thing anyway”.

“I’ve started running into women who tell me that Coraline got them through hard times in their lives. That when they were scared they thought of Coraline, and they did the right thing anyway”.
— Neil Gaiman, on Coraline (2002)

Coraline, the intrepid traveller

Neil Gaiman’s book, Coraline, tells the story of the eponymous girl-heroine who goes through a mysterious door at home and finds a parallel-but-more-than-slightly-off version of her family life.

At first the door opens onto a bricked-up wall – a barrier between the here and there – but for Coraline it later reveals a once-hidden corridor to a place where her parents have buttons for eyes and everything is a little too perfect for comfort.

Like Pandora and Alice before her, Coraline’s curiosity (and profound boredom) compels her to open the door and enter without thinking first about the risks. Her mantra is and remains, “I’m an explorer”, and because her parents are too wrapped up in work to notice her departure, she takes advantage of the free rein.

In the breathtakingly spooky stop-motion animated version of the book made by Henry Selick in 2009, the door is a tiny cut-out set low to the floor. It has been papered over but its outline and keyhole are still visible and the old key still works in the lock. It’s a door that just begs to be opened.

Once unlocked, it exposes a magical, blue-lit worm tunnel that seems to shudder and move like it’s alive; I don’t think it’s a stretch to see it as a fantasy birth canal, delivering Coraline into the place beyond the door.

Searching for fun, adventure and nourishment, our girl finds her Other Mother and Other Father waiting on the other side to ‘love’ and ‘entertain’ her.

They are creepy renditions of her real parents, like the doll she is given that bears a resemblance to her but loses something vital in translation from fabric to girl.

But Coraline is smart and she instinctively reads a warning in the outer signs of this same-but-different world, like the horrifying, black buttons everyone has instead of eyes. There’s something so shiny yet dead about them – no smile will ever be reflected there, nor anything natural or good.

Though filled with freedoms and delights unavailable to Coraline ‘back home’, this ‘other’ place is really an elaborate trap. It’s a web dressed up to look like her heart’s desire by a very cunning spider (the Other Mother), who aims to catch, keep and devour her.

The request to have her own eyes sown with buttons by the Other Mother is a bit of deal-breaker for Coraline, as you can well imagine. The last time she goes through the door, it’s to rescue her real parents who have been captured by the Other Mother to draw Coraline back to her.

The courageous girl confronts many fears in her fight against the will of the spider-in-Mother’s-clothing; hideous things like dog-bats, a slug in an egg-case “as if two Plasticine people had been warmed and rolled together, squashed and pressed into one thing”, and a shapeless grub, with twig-like hands lunging at her in a dark basement.

Despite this catalogue of horrors, Coraline tells herself that she’s not frightened “and as she thought it she knew that it was true”. One can only marvel at her bravery, at her brilliant use of positive self-talk.

Gaiman’s wonderful, terrifying story and its film adaptation struck a huge chord in me. Aside from the delicious thrill of the tale as I tucked my feet under my body (lest a spidery hand should grab me from under the couch), the idea of being caught in one world while longing for another was painfully familiar.

Most of us live with disappointments and frustrations in the ‘real’ world and perhaps fantasise about an ‘other’ world, where the colours are so vivid and the experiences so rich we don’t have to confront hard things.

Coraline imagined a world where her parents would be different, remoulded into people who cook her appetising meals and exist solely to amuse her, and so she was offered a brief glimpse of what that life might be like.

It is a credit to her that she rejects that life as a lie, even if her real existence is less than ideal.

For me, an ‘other’ world would be a place where I have no big-ticket worries. In it, the Other Amelia, the facsimile of my daughter, is not deaf. She can hear everything and anything and she can speak fluently and tell me her mind. And she definitely does NOT have buttons for eyes.

The Other Amelia is a child without autism. The words disorder and delay are unknown to her, to me. There is no sensory chaos and making friends is easy. Anger, rage and hyperactivity belong to another hemisphere of experience. To another child.

We walk together slowly and she holds my hand, never running away. And we sleep for a very long time.

But if I take these things away from her, who is the child left over? Is it still Amelia or a distilled version of her, a person negated? Does she become like one of those husks left behind when the Other Mother is finished feasting on little souls?

She would be different, yes, and maybe her life (and ours) would be easier, I am not afraid to admit that I do wish it sometimes.

But she would not be my Amelia. To excise one element would be to ruin the whole, to make her less than she should be and much less than her strong personality makes her.

I myself have opened many doors containing fearful things since that first one, when I gave birth to my girl, and there is nothing scarier than suddenly becoming responsible for a tiny, vulnerable human being.

I didn’t know for instance that deafness was behind another secret door in the house of my family. I only knew that there was some dark problem lurking there and it had to be unlocked, no matter how afraid we were.

If Amelia can be brave, then so can I

As for autism, perhaps my greatest fear of all, well, that one has whispered to me through keyholes from the beginning, and over time it has become a shrill and insistent voice, demanding to be heard. Okay, I surrender; we have opened that door now and let the truth of it in.

Like calling out the bogeyman who lives under your bed (or Bob from Twin Peaks who crouched under mine for all of my adolescence and part of my adulthood), the most dreaded thing is never as daunting when you drag it out into the light.

I love Amelia more than I love my own life or anyone else’s. She isn’t defined by her challenges but they are part of what is shaping her, in the mix with her character, her brain, and her heart. So we must embrace it ALL if we are to keep her happy and safe on this side of the door with us.

But my anxiety about further unknowns surrounds me always, crowding me for space and air, and I can’t just hide from it in some fantasy world.

Because like Coraline, who my own gutsy daughter adores for her blue hair (and insists her own hair be styled to match), I have to do the right thing and face up to what scares me and keep telling myself, “I will be brave. No, I am brave”.