One little shell

One little shell

Waiting in the foyer at Amelia’s deaf school for her to finish kinder is a warm and frequently special place to be.

Sitting there, in the middle of the hectic end-of-day rush to get home, I watch the kids signing to each other with awe and respect and I love them.

The other day, a young girl, maybe six or seven years old, nudged my arm to show me a little shell she was holding in her hand. In Auslan, I asked her, “What’s that?”

We mouthed the word “shell” to each other, but she was desperate to show me the sign and I so wanted her to teach me.

But she needed two hands.

After a few seconds fumbling with the shell I extended my hand so she could rest it there.

Her hands now free, she lifted one to the other and rotated her right hand out from the left, like the drawing together of layers into a whole.

Ah, shell. I placed it in my lap and repeated the sign back to her.

No not quite, she wasn’t happy with my signing form that time. Maybe a finger or two askew, or a motion not delivered deftly enough.

I tried again and she nodded with approval. Got it.

Then, quick as flash, she reclaimed her shell and skipped away.

And I couldn’t stop smiling.

Art therapy – session notes # 1

Art as therapy for children

I have lost count of the number of medical appointments that Amelia and I have been to over the last two or so years. Scores of them, I guess. Hearing tests, MRI/CT scans, speech and language assessments and therapy, paediatrician check-ups, blood tests, genetics testing, more hearing tests and so on.

It has been gruelling and demanding to say the least. Banking on the cooperation of your young child in testing environments is an exercise in futility. It’s always a crap shoot, but win, lose or draw, we will be back again for more of the same.

With the recent addition of suspected Autism Spectrum Disorder to the roll call of Amelia’s challenges, we are looking down the barrel of numerous meetings with a child psychologist to help us understand her better. Other intensive therapies are sure to follow.

In the face of all this, it was a strange feeling to have Art therapy suggested to me as a way to reach Amelia and tap into her already burgeoning creative side.

After a pressure-filled six months inside the exhaustive Cochlear Implant Assessment program, I was definitely up for something fun with a ‘no harm, no foul’ feel to it.

Amelia’s sage paediatrician supported this kind of alternative therapy wholeheartedly: “Amelia is an artsy kind of girl, so I think it’s a great idea”.

My acupuncturist (I know, I know) gave me the name of an Expressive Therapist (ditto), JM, who describes her work as: “the recovery, maintenance and development of self-esteem and resilience in children and adolescents”.

“The main aim over four or five sessions using things like Sandplay, Relaxation, Art, Clay Work and Movement is in returning children to their healthy capacity to fully participate positively in their lives as soon as possible”.

Whatever the future holds for Amelia, it was an easy decision to enter into this type of gentle therapy aimed at nurturing her, building her up and maybe helping to free her from the anxiety and rage that sometimes affects her life.

Like Fight Club, the first (and only) ‘rule’ for an Expressive Therapies Session is that usually the parent does not stay with their child. Okay JM, let’s see how we go.

On our way to her house, I continued explaining in detail to Amelia how the morning was going to work and that I would not stay with her unless she wanted me to. Amelia likes lots of preparation before most outings so she is a little armed in advance.

We were welcomed by the delightful JM who took us into her home, with an enormous back room set up like an Aladdin’s cave of artistic delights. Amelia took one look at the shelves and shelves of fascinating ‘stuff’ and chose a small blue fish to hold. Then she grabbed my hand and said, “Mummy go now!”

Wow. I found myself standing on the street two minutes after we’d arrived like a third wheel dismissed for being the boring one. But it was exhilarating. I have become so gun-shy of new experiences that I often find it hard to picture them actually going to plan. But this one did, and a new door opened for Amelia the brave.

Amelia, getting in touch with her artistic side (Dec, 2012)

About an hour later, JM and Amelia came outside to greet me. My girl was the picture of happiness, spinning and laughing and relaxed in JM’s presence. It’s early days, and after one session impossible to know where things will go from here, but I couldn’t have wished for a more positive start.

JM is a warm and intuitive woman. She recognised the depth of Amelia’s interior world, just out of reach for now. She also detected the rage in her and perhaps some grief below it.

It wasn’t easy for me to hear that, but I get that Amelia has suffered ‘losses’ in her own way. Every time she tries to make herself known or understood and we let her down by failing to grasp it, she is frustrated. Maybe that feels like grief inside her growing mind and body.

It was clearly a learning curve for JM too, because deafness can put people a bit on edge, as though communication stops or is hampered when verbal language is largely off the table.

But I don’t think I need to step in as her interpreter. This gig is between them and I’m excited to see how they’ll work it out. For once I am not required and that is a blessed relief.

The drive home was one of our most relaxed for years. No screaming from the backseat or worrying in the front over bad news just received.

I put the window down to feel the wind and the good vibes and looked forward to next week. Bring on session number two.

Deaf Jews: the dud note in Pitch Perfect

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)

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.

So to begin…

Amelia in her element (Summer, 2013)

Amelia is four. She is my only child: my defiant, cheeky, beautiful, original little girl.

She is also deaf (I use this definition but others prefer hard of hearing or hearing impaired) in both ears, most likely from birth.

In diagnostic terms, her loss is categorised as moderately-severe to profound. In a nutshell, this means that without powerful hearing aids she cannot hear speech sounds clearly or at all, especially in noisy environments.

Because she was not diagnosed until after she turned two, Amelia had barely started to speak when other children of the same age were chattering away – you cannot learn what you can’t hear or understand.

At the time of receiving her aids she could say only two-three words. By Christmas of that year, some eight months later, she could sing an approximation of ‘Twinkle, Twinkle, Little Star’.

She has made gargantuan strides but it is still an uphill climb filled with plateaus and frustrations.

Like the thousands of other families in our situation, the story is a long, drawn out one, populated by an astonishing number of medical appointments and the countless fears, hopes, disappointments and stresses they place on tiny shoulders and bigger ones besides.

The implications of Amelia’s late diagnosis are obviously still with us and the challenges far from resolved.

The diagnosis of Autism Spectrum Disorder was confirmed this year, as her anger, social isolation, hyperactivity, communication problems – her ‘quirkiness’ – are now viewed as distinct from the residual effects of her hearing loss.

Deafness can no longer answer all of the questions we have about our child’s access to the world and her progress in it.

In this blog I will share some aspects of our personal story, both past and present. My aim is to be as honest here as I can be and hopefully write about things that ring true for people in a similar boat.

For more than two years we have been on a journey with lonely stretches that have sometimes isolated us from our friends, family and colleagues.

Through writing I hope to reclaim some of the negative words and feelings of these years and celebrate all of the things that I love about Amelia.