Who’s Afraid of Amelia Woolf?

If you are lucky enough to climb down the rabbit hole of parenting, you discover the existence of a world with no end – it is the realm of child-related socialising and fraternising previously hidden from view.

And like Alice, you will feel small and big (or just right) inside this world, depending on how its axial tilt favours you and the temperament of your family.

So far on our adventure, my husband and I have found that we share a general anxiety about social gatherings or public outings where children are ‘required’ to do things like sit down, be quiet or engage on some level with any kind of activity.

Our anxiety isn’t an overreaction. It’s a learned response to years of incidents that have taught us to be on guard. It’s an unease we’ve been conditioned to experience and it’s now embedded in our parenting DNA.

We’ve spent too many parties, excursions and concerts and the like standing outside rather than in, because we can’t find a way to explain to Amelia what kind of behaviour is expected of her.

The ‘red mist’ can be quick to descend when she is told that a) she can’t take that man’s guitar while he’s playing it and singing, or b) purloin cake from a stranger’s birthday party at the park, or c) scream and cry and hit when all these things come together and the result is “it’s time to get the hell out of here”. A free-wheeling, party-going, take-it-as-it-comes family we are not.

Maybe we’re overly sensitive, but sometimes there’s no certainty we’ll make it from the car park to the shops without having to stage an emotional intervention, so forgive us our premonitions of disaster. They so often come true.

Sometimes it’s hard to have a sense of humour about Amelia’s (and our own) public meltdowns. Sure, no-one likes to be looked at but there are plenty of people who do stare in judgement and provide not-so-helpful commentary as you drag your flailing child across grass, carpet and assorted other surfaces.

Then again it’s not always like that and even in fraught moments, there are opportunities to relax and see the funny side of our child’s uncompromising ways.

Here’s a case in point. Last year, we went to the annual Family Day held at the Aurora School for Deaf and Deafblind children. These were intense and wonderful days for us, where we were welcomed into the community of families like ours and told powerful stories of hope and success by deaf adolescents and adults.

Arriving amidst the hectic hubbub of registrations, we had to kill about 45 minutes before the day opened with an Auslan performance of ‘Little Red Riding Hood’ by Aurora’s deaf staff.

That significant timeframe of just under an hour is often all the time we have before Amelia grows tired, manic or just plain difficult to manage.

We approached the morning with smiles of optimism, but I could see it in my husband’s eyes as I’m sure he could in mine. Secretly we were already strapped in for the potential turbulence ahead.

Inside the large hall of the school the attendees numbered at least 80, with half of these children from newborns to toddlers and so on.

Amelia was behaving in a reasonably compliant fashion when finally we were asked to take a seat and prepare for the performance. I looked around and saw every man, woman and child dutifully take a seat on the floor and face the stage.

With the exaggeration caused by the passing of time, I recall the scene this way – where a HUGE crowd of all ages suddenly stops mid-sentence with military precision, mocking us with their social pliability and mutual respect for amateur theatre.

Like the starter’s gun had been fired, Amelia took that moment of collective obedience as her cue to jump up and start running around.

We tried in vain to explain, in sign and in speech (in anything really) that there was a fun show about to start and that she would love it, so please, please sit down. But she was ‘gone’, in body and in spirit and we couldn’t get her to look at us or notice the performance commencing right in front of her.

The next 10 minutes followed a very familiar pattern for us. While Little Red Riding Hood’s well-worn adventures were played out inventively on one stage, we performed our own pageant of harried parenting, trying desperately to ‘deal with’ Amelia.

We took turns taking her out into corridors, trying to calm her down and reason with her to come back and watch the show.

These interventions were clearly distressing for Amelia and that made it even harder. It was a chilly winter’s day but we were both sweating bullets from the stress.

At some point she seemed to understand and to acquiesce, so we led her quietly back into the hall and found a little carpet space to sit down. It lasted all of 30 seconds.

Amelia sprang up again and with her back turned slightly away from the stage, walked through part of the set and onto the temporary ‘road’ set up for the fabled Wolf’s travels with young Ms Hood.

I looked over at one of the deaf staff seated near me and signed ‘sorry’ but she smiled reassuringly and signed back that it was ‘okay’. I believed her.

The theatre world's newest creative voice

The theatre world’s newest creative voice

At last, my oblivious child turned around and grasped that she had stepped into a new layer of reality, like Tom when he breaks the ‘fourth wall’ in The Purple Rose of Cairo.

I’ll never forget the look of recognition and shock on her face when she realised there was something heavy going on between Grandma (on the floor tied in ropes) and the Wolf character (shady as this day was long).

What was most amusing was that Amelia didn’t know that it was an act. She seemed to think that the story was real and that she had better do something quickly to shut this fairy tale crime scene down.

There was no need for Method acting here – Amelia’s reactions and emotions were absolutely genuine and hilariously funny. Someone had to save poor old Grandma and who better than a feisty three year old with no regard for the rules?

Amelia started signing urgently to Grandma to ‘wait’ and that she would be ‘okay’. For the Wolf she reserved her sternest face and her most passionate telling off in Auslan and in shouted speech. He was a ‘naughty Wolf’, a ‘bad Wolf’ and he had to ‘STOP!’ The deaf performers were absolute pros and played along with this unexpected narrative hook-turn.

In true pantomime style, the audience erupted into generous laughter at this spontaneous part of the show. It was a great sound, filled with kindness, and it took a while to reach me through my clenched fists and hunched shoulders.

It made me let go of my tightly coiled state of anxiety and not mind for once that we were centre stage. I nearly missed out on the chance to see Amelia through compassionate eyes, as a funny, quirky, expressive little person, brave enough to take on the Wolf single-handed.

This is one of my favourite stories about my daughter because it has all the colours of her atypical rainbow: her resistance to parental challenge; her intolerance of social conventions she struggles to interpret; her inflexible but undoubtedly free spirit and, most of all, her deeply-felt empathy for people in need.

While we are busy worrying about what people think of us, she is off living life according to her rules and I have a lot of admiration for that.

Hopefully we will get better at seeing the humour in the moment and finding some kind of middle ground amidst all this intractability; between the rigidity of our rules and her limitless defiance of them.

Amelia’s Expressive Therapist, JM, explained it best when she told me that she is trying to help Amelia to be more forgiving when people fail to understand her and what she needs, and to be more flexible when the world asks things of her that she would rather not do.

In this, JM has come closest to defining the challenges Amelia faces more accurately than any diagnosis of deafness or Asperger’s Syndrome ever could.

She also struck on something for me and my husband to ponder as we blunder our way through the parenting maze.

My beautiful Little Red

My beautiful Little Red

Because we need to learn how to be more forgiving when Amelia does not behave the way we would like, in public or in private. We won’t always have an understanding audience to remind us to laugh when we want to run and hide.

If Amelia needs to learn to be more flexible, then so do we because we can bend more readily than the rest of the world will when she has to face it by herself.

I don’t think it’s such a big ask to meet her halfway.

Perhaps in a moment of compromise – of forgiveness and flexibility – we might arrive at the same destination from separate points of departure and find that it was the journey itself that made it all worthwhile.

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My wise little monkey

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A child who learns to compensate for two years (pre-hearing aids) with a less-than-turbo-charged sense of sound is, in my experience, a clever and often cunning creature. I offer two common examples of said cunning.

The first happened at a children’s birthday party. Our best friends had arranged for a jumping castle in the backyard of the family’s holiday house and I have never seen a happier bunch of kids playing together.

Amelia was busting out of her skin with delight. Early in the day she came over to me and put something in the pocket of my skirt and ran back to the castle. I absent-mindedly reached down and found her hearing aids tucked safely there.

I thought it was so damn cool the way Amelia did that – she didn’t throw them onto the grass or ‘lose’ them somewhere inside the castle – instead, she removed her aids with care and deliberately placed them in my custody. Amelia is never short on surprises.

For a few hours, she lost herself in the abandon of seriously good play. It really was a superb jumping castle, with four walls, little cul-de-sacs and a big slide. Much later we decided to head home so I went over to sign to Amelia in Auslan that it was time to go.

She spotted me trying to catch her eye, so she turned her back. I walked around the castle enclosure to gain a better vantage point, but she dodged me and my signing hands. Then my clever little monkey moved to the far corner of the castle and faced the wall. Amelia did not agree that it was time to go.

What a conundrum. Without her aids, she couldn’t hear me, and if I couldn’t persuade her to look at me, she couldn’t (well, wouldn’t) read my signs either. Amelia must also have understood that it would take some physical effort on the part of tired adults to climb into the castle to drag her out. If we were engaged in a game of poker, she was holding all of the cards (as well as being a terrible cheat).

Though least favoured, the drag-and-run approach was the only thing that eventually worked. It was all so knowing and very, very funny.

On another occasion, Amelia was not so cautious about the location of her hearing aids. It was early evening at home and I suddenly noticed that she wasn’t wearing them. It is easy to tell because Amelia stops responding to voices and sort of drifts off into her own world. And she really likes it there.

In Auslan, I asked: “Your aids, Amelia, where did you put them?” She ‘busied’ herself with a book in front of her and did not answer, but I could tell from her facial expression (with its shadow of impudence), and from her body language (shoulders turning away, head tilting down), that it was all a wilful charade.

Again, Amelia refused to look at me squarely, to respond to my oft-repeated question – she knew full well what I wanted, but there was no way she was going to help me.

That imperious little monkey cocked her head at me (no eye contact) and flicked a hand over her shoulder, like, “Oh, you know, somewhere over there…” Great.

Luckily her aids hiss like a two-headed banshee when they are left turned on, so I could hear that they were secreted somewhere in her room (in her bedside drawer as it turns out).

Amelia skipped off with a beatific smile to busy herself elsewhere. Mini-crisis averted, my husband and I laughed and laughed at her artful, calculating ways, so much a part of her strong personality.

Frustrating, yes, but my god she’s entertaining.

Deaf Jews: the dud note in Pitch Perfect

The 'Bellas' of Pitch Perfect (2012)

The ‘Bellas’ of Pitch Perfect (2012)

I should not have expected much from the recent American movie Pitch Perfect (2012), based as it is on the trials and tribulations of duelling a capella groups at Barden University. A Mighty Wind (2003) it ‘aint.

But, I was sick and in need of mindless entertainment, so PP seemed like a good idea at the time. Riding on the coattails of that other epic cringe-fest Glee, it’s fairly harmless, when it’s not making you throw up in your mouth a little bit.

However, it had one stupendous dud note in the midst of all the insufferable harmonising about ‘Shorty’ getting down (or something).

It came early in the piece, during the activity week of the college’s equivalent to orientation.

As the mother of a deaf child, I am always on the hunt for any representation in the media of deaf children or adults. They are so scant, so few, that it is usually a nice surprise.

Like when the inspirational Bonny Porter on Masterchef: The Professionals (2013 season) stepped boldly forward to ask Matt Preston to wear the FM transmitter linked to her hearing aid. There was no shortage of tears at our house that night.

Anyway, there are deaf characters in PP for a brief moment, and what a special moment it is. The central character in the film is Beca (Anna Kendrick, who should have known better) who doesn’t want to be at college ‘cos she yearns to make her own music, like freelance dude.

She sees an activity club called the Barden DJs spruiking its wares and is immediately drawn to their table. Fat Amy played by Rebel Wilson joins her.

“Aw yeah, DJs…Deaf Jews”, Fat Amy says. Ohhhh, that’s the joke! Beca thought they were funky Disc Jockeys, but no, these two guys are Deaf Jews who have high jacked the DJs acronym.

The ensuing interaction between our Rebel, Beca and the two deaf students (played by Michael Alexander Smith and Preston Schrag) involves Rebel sort of shouting at them (it’s funny because they can’t hear her) and just mocking them in general. Hi-larious.

It doesn’t really matter to me if the joke’s on Fat Amy for being the ‘dumb Aussie’ because even that inversion would not make up for the clumsy use of stereotypes here.

If there had been a conga-line of scenes lampooning other activity groups, I would perhaps be more forgiving, but this one just sits all by itself, awkward and pointless in the narrative.

Wonderful though it is to see young men wearing hearing aids on screen, their deafness is just a device to further one tokenistic, bad joke. As soon as the ‘deaf’ bit has served its use, the filmmakers are running a mile from it into safer territory.

Of course it’s not the most offensive thing about deaf people I’ve ever seen, but it’s pretty disappointing nonetheless. Mostly it’s just lame. Maybe better writers could have given these guys names, some dialogue (beyond “Shalom”) or even one comeback to the stupidity being directed at them.

PP chose to represent deaf people on screen and then wasted the brief opportunity to celebrate what was unique about them, like if we had seen them communicating to Fat Amy in ASL (American Sign Language). I would have loved that.

But there were projectile vomiting scenes to shoot, vital a capella trophies to be won and two deaf boys to ‘pitch slap’ on the way to glory.

The top 10 dumbest comments & questions I have heard about Amelia’s deafness

Signing 'water': Anne Bancroft and Patty Duke in The Miracle Worker (1962)

Signing ‘water’: Anne Bancroft and Patty Duke in The Miracle Worker (1962)

Throughout the last two years, I’ve had to introduce my daughter Amelia’s deafness to a lot of different people. In that time I have encountered a wide variety of questions and comments.

Some of these were part of the painfully insensitive ride we’ve had dealing with emotionally guarded specialists who did not handle us with the care we needed. Other comments followed close on the heels of the diagnosis when people really tried to say the right thing.

Sometimes they did (e.g. I am so sorry for you = that worked for me EVERYTIME). I don’t mean to disparage people who know very little about deafness – before Amelia I had formed all of my views from the 1962 film The Miracle Worker (Helen Keller is still my hero and Anne Bancroft is not far behind).

It’s a sliding scale, from words that still ring in my ears, to some that are kind of funny in retrospect and others which simply point to how little is understood about deafness in the wider community:

  1. I don’t think she’s autistic, but there is something wrong with her… (Paediatrician’s comment after finding Amelia could not understand him properly or communicate with him at age 2, pre-diagnosis. It’s all in the tone).
  2. It is most likely something permanent and irreversible. I’m not optimistic about it and there is nothing more I can do for you (Ear, Nose & Throat (ENT) surgeon, ‘gently’ telling me something was very wrong with Amelia’s hearing at age 2+).
  3. Don’t worry, the doctors are probably being overly cautious and she will grow out of it anyway (you would be surprised how many people think that a child can grow out of their deafness).
  4. Well, it is the disability of choice (yes, on reflection it really was the best cut of a smorgasbord of problems we might have chosen for our child).
  5. Don’t worry, every child has something wrong with them (examples offered include: my child has eczema or allergies or wears glasses).
  6. Does Amelia need a special carer to be with her at childcare? (um, NO).
  7. She has hearing aids now so everything is fixed, right? (again, NO).
  8. Will she be able to go to a normal school? (I admit that I asked this one. First thing I said after I stumbled out of the testing booth at the hospital. Lots of people have joined me in asking this once since then and the word normal crops up with dazzling regularity).
  9. But if you teach her Auslan (Australian sign language) will she still learn how to speak? (There is no evidence that learning sign language impedes oral speech and language development but this is a common view).
  10. But you don’t need to use sign language if she has hearing aids, do you? (Even with aids, Amelia does not hear everything and most of the time she is in environments with some background noise which compromises what she can hear. At bathtime and bedtime she doesn’t wear her aids. You tell me if you think sign language is important or not).

In all honesty I would rather handle 20 of these questions if it leads to some kind of enhanced understanding about deafness and its impact on Amelia’s day-to-day life.

I’m sure there are many more of these that other people have heard. I’d love to hear them if you feel like sharing.