The strange tale of the doorway and the evil Swiss ball

Ethan the loner, framed in one of Ford’s great doorways

John Ford’s 1956 masterpiece The Searchers, is a Western bookended by two famous shots looking out from the doorways of connected family homes, nestled in the wilds of West Texas.

In the film, these shots and the points of view they frame represent many things. The opening doorway view captures the staggering scale of a remote frontier land that dominates the family home perched so precariously there.

For the arrival of the film’s central protagonist, Ethan Edwards (brilliantly played by John Wayne), the framing signals his status as an outsider – he emerges from the wild ‘out there’ and is more at home in its harsh environs than the domestic spaces he visits.

In the end, after returning the once lost Debbie to what is left of her family, Ethan stands tentatively within Ford’s final doorway frame (see above), but we understand that he cannot join the others inside.

Some doorways can’t be entered again, not after so many lines have been crossed to get there. For Ethan, there’s nothing to stay for – Debbie is rescued and Martha (his love) is gone.

In my home, the doorway to my bedroom has for the last few months been a barrier to Amelia, my daughter, who has positioned herself as the Ethan to our Aaron and Martha (do yourself a favour and watch it). Her comfort zone is the outer limits of the hallway, not the warmth of her parents’ cosy bedroom.

In the early hours of the morning, Amelia will come and visit us for a short, iPad-induced stay, but during the day she will stand nervously on the threshold and never enter our room.

I didn’t really notice the demarcation at first, except to remark that it was a welcome thing that one room in our house was free from the onslaught of toys and the relentless prying of small hands.

The objects within our room remain safe; precious possessions do not need to be hidden or squirrelled away. I can actually go and get dressed or tidy up without Amelia’s ‘helpful’ assistance.

A small victory, yes, but she’s running the rest of the show, so I’ll take all the privacy I can get.

Lately Amelia has become strangely agitated by our doorway – it looks pretty nonthreatening to me, but for her it clearly looms up and signals something fearful beyond its perimeter. I have puzzled over it for weeks.

If she is the director of her own story – and she most definitely is – then the open space of our bedroom doorway is certainly not the frame Amelia would choose to make romantic or mythical points about belonging and unrequited love.

No sirree. From the moment we break ranks with sleep in the morning, she starts barking orders at me in a dictatorial tone I’m sure Ford would have used with his film crew: “Shut the door!! Shut the door!!!!”

And what do I do? I shut the damn door and I keep it shut. All day.

One day I absentmindedly opened it while I was on the phone. I forgot to close it on my way out and walked into the kitchen, still talking to the person on the end of the line.

The next thing I knew, Amelia was sitting on the floor in front of me in tears of distress as she began hitting herself on the head with the flat palm of her hand while yelling, “Shut the door, shut the door!!”

Okay, I thought, this door business has got to stop. I tried talking to her about it, asking her what she was afraid of or didn’t like about the interior of our room during the daylight hours. But she wouldn’t tell me or didn’t know how.

Then I remembered something from her younger days, when I used to use a Swiss ball to do some crazy home exercise program. She really hated that ball, and it now resides permanently in the corner of my bedroom.

I wondered, ‘is it the Swiss ball, so innocuous to me (and a reminder of a long-abandoned fitness regime) that she fears so much? Is that ball like a sleeping giant to her, ready to pounce unless the door is closed?’

I’m not above pondering the evil properties of a Swiss ball if it helps to calm down my agitated child.

So on Tuesday this week I experimented with a little acting of my own. I took the dust-covered ball and brought it out into the lounge room.

Amelia bolted like Lord Voldemort himself had swept through the door (actually she would have liked that a lot more). I discovered her cowering in the toilet. My instinct about her terror of the ball had been on the money.

There’s no such thing as a victimless crime…

Then I commenced my pre-meditated pantomime of hunting down that poor unsuspecting Swiss ball and committing cold-blooded murder. In the kitchen. With my foot.

Yes, with my sock-covered foot I did slay that good-for-nothing ball. I took out its pin stopper and invited Amelia to peek out from her toilet hidey-hole to witness its painful demise.

To hasten the death throes of the ball, I pushed my foot down repeatedly onto its once shiny, silver skin. I watched Amelia’s eyes widen in awe at her mother’s unbelievable bravery, as the life-giving air hissed out of the Swiss ball’s body for the last time.

That ball now knows never to mess with a red-haired woman with murder on her mind.

The sordid affair ended with the ceremonial carriage of the deflated ball-corpse from our house to the garage.

I shouted “Be gone, foul beast!” (or something to that embarrassing effect) into the suburban air, to mark the end of a once mighty (cough) foe.

But did my theatre of the absurd exorcise imaginary demons and convince Amelia to stop being so frightened of our doorway and the bedroom space behind it?

Well, so far, so good. In the mornings since my crime, she has looked anxiously at the door and asked me the vital question with her eyes, “is it okay?” Yes, dear one, that big, nasty ball is gone and the room is ‘good’ now. You have nothing to fear.

She now performs my act of brutality for anyone who asks about the story of the doorway and the evil Swiss ball. “Go away big ball! Mummy’s room good now”. She signs ‘good’ with a generous thumbs-up.

Her gleeful rendering of my ridiculously overacted (think Ward Bond) stomping  makes me laugh and laugh every time I see it. But she is deadly serious when she acts it and tells it, just as she was serious about never coming into our room while the ball ‘lay in wait’ for her.

While she remains somewhat wary of coming into our bedroom during the day, that’s fine with me. I was running out of places in the house to safely hide a stash of chocolate or presents bought for her cousins.

But the incessant yelling and anxiety about shutting the door has ceased for now. Calm has been restored, at least on that score.

I’m no superhero – I can only slay the fears that are identifiable, that I can see. Some Amelia will have to fight on her own, like the loner Ethan Edwards, out in the wilds of West Texas and beyond.

So I guess what I’m really trying to say is that you just HAVE to go and watch The Searchers. Like, right now.

To cochlear or not to cochlear, that is the question

Internal view of a cochlear implant

It’s not exactly a Shakespearean proposition, is it? I mean, Hamlet was preoccupied with epic matters like the meaning of life, murder and betrayal. As big decisions go, the gloomy Dane had heavy burdens to grapple with, so our little box of trials can hardly compare.

But the weight of the decision – whether to agree to a cochlear implant, or not, for my four year old daughter – has had me standing in shadowy courtyards talking to ghosts and pondering the slings and arrows of outrageous fortune.

It hasn’t driven me mad (yet) and it’s not an Elizabethan tragedy, but it ain’t no fun-fest either.

It all started late last year with a surprising hearing test result for Amelia. Every check-up since the beginning of 2011 had shown the same level of hearing loss, averaged across both ears: moderate-severe, sloping to profound in the higher frequencies.

At this level of loss – the final frontier before cochlear implant candidacy is considered an option – hearing aids can still work very well to give a child sufficient access to sound; enough so they can learn how to listen and how to speak.

Of course aids cannot close the gap entirely and many sounds detectable to our ears, like birdsong, will mostly elude her forever. But with them, Amelia is able to hear and repeat speech sounds that would not otherwise be accessible to her.

A child will only need a cochlear implant if they have a permanent severe-profound hearing loss and hearing aids are shown to provide little to no benefit at all.

If I have been thankful for anything since Amelia’s deafness was diagnosed, it was that we did not have to go down the road of cochlear implant surgery, with its intensive (re)habilitation and the added visibility of the processor that attaches to the receiver near the back of the head.

We had settled comfortably into life with hearing aids; they had fast become a natural part of our existence. At first it was hard to adjust to their intrusion in our lives, that when I got close to Amelia’s face or brushed against the aids, I would hear the horrible buzz of feedback created by the contact.

But it’s funny how quickly you do adapt and also how fiercely protective you can be of the new space you’re in. For us, hearing aids and a stable level of hearing loss were important threads in the security blanket we’d wrapped around ourselves to weather the change.

It’s no wonder that I did not ever want my baby girl to need a cochlear implant or any other kind of intervention that would cast us into yet another vortex of the unknown.

So, when I took Amelia to her regular check-up in October, 2012 and it showed that her deafness was now testing at profound levels, I felt like the sky was falling. It was a vast, bleak sky and it covered me in darkness. And fear.

I looked at the pen-lines that snaked across the audiogram in front of me, tracking Amelia’s hearing levels across four frequencies. They were steady at first and then jagged downwards sharply like a plane diving into the red zone, from 75 decibels to the depths of 110 (the scale is 0-120, with 0 representing ‘perfect’ hearing).

Not even the mighty Chuck Yeager could have turned this tailspin around, and that guy broke the sound barrier.

The result shocked the audiologists too – I could see it in their troubled eyes. We all just sat there looking at each other, hoping that there was another explanation for the sudden catastrophic change.

Had Amelia been distracted during the test? No, we all agreed she had been unusually calm and engaged, making her responses the most reliable to date. They had been able to capture four frequencies for both ears for the first time ever in one sitting.

I remember feeling so proud of her effort that day, but the result cast a pall over it. There was nothing to rejoice in here.

Perhaps it was some other kind of obstruction in Amelia’s ears? I have never wished so hard for poor ear health. No, they performed the standard tympanometry test and her middle ear function was free and clear. There was no wax or fluid to blame for this alarming result.

We were told that the next step was an immediate referral to the Cochlear Implant Clinic (CIC) for an assessment, particularly for her left ear which had recorded the most dramatic change. Some children are only implanted in the worse ear and wear a hearing aid on the better side.

Amelia’s level of deafness, which until this point had positioned her on the cliff-face between hearing aids and cochlear implant candidacy, now plunged her over the edge into a wholly unfamiliar world. We were definitely not in Kansas anymore.

I remember I had this stupid, polite smile on my face while our audiologists spoke about the assessment program, like they were telling me a story about the weather or the traffic. I would have slapped my own face if I’d been able to see it.

But if I had spoken too much or allowed the dread inside me to leach into my features, I would not have made it through the next five minutes, or the drive home, without totally losing it. And Amelia, as usual so blissfully unaware of the catastrophes befalling her, did not deserve to be confronted by my tears, my pain.

The experience took me back to the ground zero of our original diagnosis day and it felt nearly as horrifying, but I had good company there.

Amelia has grown to love her hearing aids

I found out later that week that our main audiologist, IS, had carried Amelia’s file around with her for days after the appointment and even took it home at night to try and puzzle out the result. To find some other explanation for it, other than a permanent one. We shared our mutual sadness and disbelief on the phone and I felt a little better.

So what is it that I feared about a cochlear implant? Why was I so resistant (as I still am) to the idea of it? It is indeed a wonderful technological development and has transformed the lives of many deaf children and adults. That is something I would never dispute.

But contrary to popular opinion, it’s not the deaf person’s equivalent of winning the lottery or finding one of Willy Wonka’s golden tickets. We did not hope that our child would one day be ‘lucky’ enough to need a cochlear implant.

Yes, we are fortunate to live at a time when this technology exists and in a part of the world where it is available to us. But finding out that Amelia had apparently lost a significant amount of her remaining hearing could never be a cause for celebration.

Cochlear implant surgery is relatively routine and low risk. But that doesn’t mean that it isn’t invasive and that agreeing to it for your four year old isn’t a gut-wrenching decision.

An incision will be made into your child’s head and part of their skull excavated to accommodate the internal receiver. Once the implant is in, it’s inside them for life.

Cochlear implants are not a ‘cure’ for deafness. When the external processing hardware is removed for sleep or bath time, an implanted child is still deaf, just as Amelia is at night when her hearing aids come off.

And in most cases, implantation will cause ALL of a person’s residual hearing to be destroyed.

Surgery is only part of the story. A cochlear implant turns sound into electric signals, where a hearing aid works to make sound louder. One simulates where the other amplifies.

It takes a lot of programming, effort and long-term commitment to help a child to interpret these electric signals through the implant. It involves learning an entirely new way of hearing.

If we were running out of time to find the right intervention for Amelia, an implant did not promise a quick fix. It guaranteed a much harder path than the one we were already on.

Whatever the circumstances, the benefits, or the urgency, you do not rush into a decision like that.

My husband and I agreed that if the CIC could show beyond any shadow of a doubt that Amelia’s progress and development would not continue to flourish with hearing aids, then we couldn’t in all good conscience deny her a cochlear implant. But we had to know for sure.

The assessment process is long and arduous, as it must be. No-one at the CIC wants to implant a child unless it can be proven that they will benefit from one.

From November 2012 to the end of February this year Amelia endured rigorous testing and re-testing of her hearing and her communication skills – there’s a multitude of appointments to attend with Ear, Nose and Throat specialists, speech pathologists, audiologists and so on.

I have written before about how Amelia finds tests difficult to navigate sometimes, so every appointment presented itself like a stressful obstacle to the completion of the assessment process.

It was an intense and often nerve-wracking program akin to being on a rollercoaster. The initial hearing tests in December and January conducted at the CIC confirmed the poor October results. We resigned ourselves to agreeing to an implant in at least Amelia’s left ear.

She went to hospital for MRI and CT scans to examine her cochlea, auditory nerve and brain, to make sure that implantation would be risk-free and achievable in her case (some children are born without a cochlea or auditory nerve making surgery impossible).

Amelia’s not a massive fan of hospitals or keeping still for doctors, so I had to pin her to my body with the help of two attendants while they put her to sleep, containing the rising sob in my throat as her flailing body slowly gave up the fight.

But it wasn’t all doom and gloom – the rollercoaster transported us up as often as it took us down.

Amelia’s communication tests showed that her speech and language was around a year off the pace, but for a child only aided for two out of her four years on earth, that showed an astonishing rate of development.

And just as we were getting close to hearing the CIC’s final recommendation, Amelia’s hearing tests shifted back to their original levels – to the blessed ‘moderate-severe/profound’. No-one could explain why the previous tests had been so dramatically different. Fluctuations are not uncommon, and for us it didn’t really matter.

These hearing tests along with the MRI/CT scans (which identified no internal problems that might cause further hearing loss) and the positive assessment of Amelia’s communication skills combined to give us a stay of implantation. After months of uncertainty it was a huge relief.

Amelia, relaxed and where I want her to be

The final CIC report said that Amelia is not a candidate for a cochlear implant right now, but if in six months her speech and language development has stalled, then we’ll be back in the courtyard wrestling with ghosts and one of the toughest decisions of our lives.

Amelia is only four years old. It doesn’t sit well with me to let doctors take a drill to her head without her permission or knowledge and potentially take something precious from her like the rest of her hearing, unless it is absolutely necessary. Not until all other avenues have been tried, tested and shown to be useless.

I think she deserves at least six months to progress and prove what she has been showing us all along – that she is an amazing little girl with more guts and determination than anyone I’ve ever met.

I know we might yet again have to weigh up the benefits of a cochlear implant, the evidence of which surrounds Amelia every week in her deaf kinder class, but thankfully for now we are free of this particular ‘sea of troubles’, as Hamlet himself might have put it.

Wherever we are headed next, I will put my hopes somewhere safe – with my daughter Amelia – who doesn’t know what a cochlear implant is, but she can tell me she loves me and hear me when I say it back, and that’s all the armour I’ll ever need.

Dance like no-one’s watching

I marvel at her,
The way she moves,
The angle of her head
As it tilts inwards and out

The thrust of her hands
And the awkward grace
Suggested by the arc
That is sketched in the air,

Just there.

When she dances
It’s like all the light
Held in the sky turns to her,
A beacon to her moment of joy

To her dancing,
Forever dancing
Like no-one’s watching
But me.

Playing from the bottom of the deck

In this card game, poker faces are preferred

I haven’t said too much in the short history of this blog about my daughter Amelia’s diagnosis of autism.

I’ve touched on it and certainly described many related behaviours, but we are only at the beginning of what this news means for our family.

I’m reluctant to be too definitive about it because the diagnostic progress takes a long time and we are currently stuck in the no-man’s-land between one stage and the next.

Since March, when our paediatrican first put the words autism and Amelia in the same sentence, we have spent an agonising four months waiting to see the next specialist in the queue to assess and confirm the diagnosis.

While we have been in this frustrating state of diagnostic stasis, Amelia’s red-flag behaviours have persisted and some have begun to escalate beyond our reach.

As parents, we are running out of strategies to alleviate how far these things impinge upon Amelia’s generally happy day-to-day existence. We needed help at least a year ago, so July seems so far away, even if it’s nearly upon us.

I am trying not to worry, to smother my anxieties as they creep up my spine and into my harried mind. But it’s hard to hold onto the distant promise of answers to the question I ask my husband every night after we turn out the light: “Do you think she’s going to be okay?”

Last week, my Mum and I decided it would be fun to teach Amelia some card games. It was cold and rainy outside, so we thought some old-fashioned parlour games would keep us all entertained.

We opted for ‘Snap’, because it’s easy to teach and is great for learning about matching pairs and turn-taking. The three of us made a little circle on the floor and my Mum dealt us cards from the deck.

After a quick précis of the rules, the first game of Snap kicked off without a hitch. Initially, Amelia seemed more interested in her cards than the object of the game, but she was so happy to be hunched on the floor with us, thick as thieves, that it didn’t matter.

The she warmed up and started to appreciate the simple joy of smacking your hand down over a jumble of cards with a pair on top.

It made me laugh that she kept playing her cards from the bottom of her little deck, almost unconsciously. She would have made the long line of wily card players in my family terribly proud.

I have to admit that my Mum and I are outrageously loud and competitive people when we are fired up and this day was no exception. We were really getting our Snap-groove on, leaning intently over the cards, and screeching like banshees when a match was made.

We forgot to yell “Snap” and instead went with a sort of barbaric “Yaaaaaaaaaaaaaaaaaaaaah!!!” when a King fell onto a King or an Ace met its match on the carpet deck.

This should have been a simple and fun thing for us all to share on a rainy afternoon, and Amelia used to love joining us in moments of carefree hilarity. But this time she became deeply distressed by our laughter, by the volume of our voices and the changes to our facial expressions, caused by the ecstasy of winning. By our happiness.

This type of distress has been happening a lot lately. As soon as voices are raised in excitement or people are talking in higher volumes or laughing loudly she is gripped by a terrible anxiety and starts yelling “No laughing, no laughing!”

Amelia runs at us and puts her hands over our mouths, desperate for the change in atmosphere to cease. We have to hug our girl to reassure her that everything is alright.

Her fingers will frantically pull at my mouth as she shouts at me to “smile, smile, Mummy!” There’s something comforting or recognisable Amelia wants to see restored in my expression, volume and tone.

She watches my face incessantly but her wires are all crossed so the signals that should tell Amelia that I’m happy/pleased/relaxed are being received as a mixed message that is both negative and scary.

This extreme reaction now intrudes on many conversations or occasions of spontaneous laughter both at home and when we’re out visiting people. It is upsetting and baffling to watch and experience.

The rainy day card game was no different. Amelia just couldn’t handle the raucous play going on around her, even though we tried to explain that laughing is good and we were only having fun. But she didn’t understand.

There was something so dreadful about the gulf between the collegial laughter that my Mum and I were so enjoying and her absolute terror – and that’s what it was – at the sound and sight of us.

We fought hard to control ourselves, like naughty schoolgirls confronted by a forbidding teacher who definitely does not get the joke. But in this case, it was my poor daughter, who was now sobbing and begging us to hold her so she would know that everything was fine in the world.

But it’s not, is it? How can it be when a game of cards and shared laughter can reduce Amelia to an emotional wreck? What is happening inside her to make her so increasingly confused and upset by these shifts in the behaviour of people she knows so well? How can the sounds of merriment be so lost in translation that they become threatening to a child?

How did we get here? And how on earth do we find our way out?

July cannot come soon enough for the number of questions we have and the answers we so urgently need.

Parent or advocate?

You are the best advocate for your child.

You are the expert on your child.

If I’m going to box, I want to be directed by Scorsese

If I’ve heard these weighted expressions once, I’ve heard them a thousand times over the last two years. Sometimes they are like straitjackets, pinning my arms to my sides, suffocating me. No matter how hard I struggle against the bonds, they will not break.

When I am not so angry and more accepting of my job as an externally appointed parent-advocate-expert (a triple threat, if you will), I find I can walk the line and just cop to the fact that I have to keep my eyes peeled and my sleeves rolled up. You know, all of the time.

Because there’s no choice, between one role and the other, not at my end of the parenting game. I can’t just say “yeah, you know, today I don’t feel like being an advocate for you Amelia, I kind of just want to run away to the movies and hide”.

My responsibilities would find me there anyway, up to my shiny eyeballs in popcorn and lust for Mads Mikkelsen.

Generous people tell me I’m doing an amazing job at it, because I’m tough, because I have fought so hard for my daughter and, I guess, because I’m still standing. This is reassuring to hear because I don’t really know what the hell I’m doing most of the time.

But in all honesty, I didn’t want to have to be a pugilistic parent/advocate. Not at all. It doesn’t really come naturally to me, this so-called toughness. I just wanted to be a simple parent, an ordinary mother.

When I was going through IVF treatment, I didn’t dream of much more than the birth of a healthy child. My hopeful mind dared to stray to thoughts of long, slow walks with the child of my future – I would hold her little hand and whisper secrets about the world into her ear.

Now I want to laugh in the face of that woman, who thought that the realisation of that dream was the one battle she had left to fight. That poor woman who was so deluded she put her boxing gloves away and let her guard down. I do not recognise her in myself anymore.

But resistance is futile when you become the mother of a child who needs so much more than nappies and lunches and lullabies. If you don’t take on the mantle of advocate and close the gap between your child’s challenges and other people’s understanding of them, then they will fall into a crevasse the size of Western Australia.

So get over yourself and get on with it. That’s my personal mantra. It’s not very poetic as mantras go, but it’ll do for what I have to get done.

If you are wondering how advocacy works in my situation, as the mother of a deaf child with additional needs, well here’s a list of some of the essential gap-closing things I tell people who interact with Amelia:

1. Amelia has a moderate-severe/profound hearing loss which means that without aids she can only hear fragments of words or really loud noises like a vacuum cleaner, a motorbike or a stereo cranked up to 11. Here’s a handout from Australian Hearing which perfectly illustrates this information (I gave this document to lots of people in the early days and still carry a worn copy in my bag),
2. With hearing aids, in a quiet room, when you are close by, facing her and have her full attention, Amelia can understand you very well,
3. If you want to get Amelia’s attention, you can touch her on the shoulder, tap the table in front of her or stamp your foot nearby (I also have fact sheets about how to communicate non-verbally with a deaf child which I have distributed when necessary),
4. Please make sure Amelia can see your face when you are trying to talk to her because she relies on the cues she reads in your expression and lips to follow what you are saying; kneel down at her eye level and make sure you don’t cover your mouth,
5. If Amelia is not wearing her aids and you are talking to her back or from across the room, SHE CANNOT HEAR YOU,
6. Well-lit rooms are the best for maximising how much of your facial expression and lip movement Amelia can see when you are speaking to her,
7. Background noise, like booming televisions or loud music will radically reduce how much Amelia can hear (her hearing aids are powerful but with competing sounds, they will not be able to pick out and make sense of softer conversational tones from the wall of noise). That kind of noisy room is an acoustic mess for Amelia, so please turn the sound down or off,
8. Amelia is a visual thinker and learner, so even if you don’t know any sign language, lots of gestures to communicate with her are welcome,
9. Amelia’s hearing loss was diagnosed very late, so her speech and language is delayed. But she can understand a lot of what you are saying, so please don’t stop talking to Amelia just because she can’t necessarily answer your questions or speak like other children her age,
10. Amelia is highly fearful of certain situations, such as doctor’s examinations or tests, so please be understanding if her behaviour seems manic and a bit naughty – it is only because she is afraid and stressed.

Amelia and her Nan, up close and personal

I figure if you know these things about what it’s like to be Amelia and cope with a significant hearing loss in environments that are often set up to think of her needs last, then maybe she’ll have a fighting chance to access the world on a more level playing field.

But you have to meet her where she is, not the other way around.

You can never assume that people will know anything about deafness, its complexity and how it affects an individual child, either through experience or instinct. Even if you meet someone who knows a little bit about some of the issues involved, they won’t have any idea what they mean in Amelia’s case.

That’s precisely why it’s my job to pave the way and educate. I’ve had to learn so much myself, about audiograms, hearing loss, hearing aids, sign language, and cochlear implants, not to mention how my daughter’s life is impacted by her challenges and what strategies might serve to help her.

In certain situations or with particular people I find I have to repeat myself many times. I’m sure that can be annoying, but I can’t afford to care.

Other times I grow weary and give up after restating the same message in different ways (gently, incidentally, directly) when it just isn’t being heard and taken on board.

In those moments I feel like I am failing Amelia by not pushing past my own emotions and hammering home these messages more forcefully.

I’m no expert on Amelia – she defies being pinned down or defined – but I know that when we go to have her hearing tested every eight weeks, she will only tolerate soft headphones (not the tube phones inserted into her moulds or the bone conduction ones with their hard edges) and we have to warm up with the marble game first (try it, it’s tremendous fun).

Amelia and me – we’re in this together

If someone forgets these little details, I’m there to remind them and I always ask to wear my own pair of headphones because I know this makes Amelia feel like we’re in it together. And we are.

We used to have inexperienced graduates assisting our main audiologist with the testing. By the time they had worked out the equipment and how to set up the games, Amelia was half-way out the door.

After a few conversations with the clinic, we now have two senior audiologists with us every time a test is conducted. It’s harder to find a time-slot, but getting regular and accurate hearing test results is too important to settle for anything less than the best.

At the moment, Amelia attends both a mainstream kindergarten (one day per week) and a deaf kindergarten (two days). At the latter, I can for the most part take my advocate’s hat off, because her teachers understand deafness (or are deaf) and so I don’t have to explain anything about the big ticket items on our list.

I know some things get missed at her other kinder, based at a local childcare centre, like hearing aids not turned back on after a nap, music played too loud or conversations held around Amelia rather than with her. But by and large the people there have been amazingly inclusive of my girl and her needs.

More than one child care worker over the last two years has paid their own way through Auslan courses and worked with our Early Intervention service so that Amelia can make the most out of her time with them. The staff took the education process to another level on their own initiative and I truly love them for that.

It is also a nice surprise when I come into contact with a person or organisation, equipped with my advocate’s bag of explanations, and find that they are already primed to meet Amelia where she is.

Exhibit A: I called a local youth theatre the other day to talk about a Drama Play program for three-five year olds. Our paediatrician had told me that they often work with deaf kids so I should see what they might have for my ‘artsy’ Amelia.

I was quickly transferred to their Access Officer (already a promising start) and told her about Amelia and that we wanted to try the program in term three. She was so positive and excited about welcoming Amelia into the program, which she said would be perfect for her.

She said, “Does she use an FM?”

“Um, yes, she does sometimes”.

“Great, bring it with you, we use them all the time. I’ll set up a meeting with our artistic director running the program so you can come and in and tell us all about your little girl. If we need to organise for an interpreter or any extra support we can do that at any time”.

Me, “………………………..

I didn’t need to say anything else because she had closed the gap of understanding before I needed to leap in and unfurl my list of ‘stuff’ about Amelia.

This type of interaction is rare but when it happens you have to sit back and appreciate how liberating it is when someone just ‘gets it’ and you don’t have to endlessly explain. I’m told it’s not my default setting, but I really do like shutting up when others cover the bases ahead of me.

So for a few blissful minutes on the phone, I was just a mother who was neither an advocate nor an expert, and in my experience those moments are worth their weight in gold.

Driving home with Martha

While Amelia and I were driving home tonight, Martha Wainwright was being interviewed on the radio. Set to the rhythm of her Canadian-American origins, her voice is all confidence and husky charm – I love the sound of it.

After the chat segment was over, she played a song she wrote for her baby son called Everything Wrong. With just an acoustic guitar and her voice – THAT voice – Wainwright’s plaintive song filled the inside of the car with its raw beauty.

The song aches with the fears and hopes of someone opened up to the exposed state of motherhood; of loving someone more than you love yourself.

And then Amelia started singing too. I had the volume up quite high and her child’s voice rose to meet the high notes that Wainwright was hitting just ahead of her.

I could hear in my girl’s singing – even with the slightly flat tonality – that she had an ear for it, for the big high notes, and she was belting them out with everything she had.

Amelia sounded like a wolf howling at the moon. A really, really happy wolf engaged in an impromptu duet with the great Martha Wainwright.

I turned my shoulders a little if only to catch her in this operatic state of grace and she beamed at me: “Mum, I sing!” Yes, my sweetheart, and it sounds beautiful.

Isobel with an ‘o’

I come from a small family. The inevitable passage of time has severed us from the upper branches of our family tree, leaving us vulnerable to the wind.

I am constantly searching for connections to the family of our past, hoping to feel a part of something bigger and more complete. Too many links are missing, too many secrets lost or concealed. I wonder who we are if we don’t really know where we came from.

Years ago, I committed hours to the research of it, trying to breathe life into ghosts long passed over. I built the beginnings of a picture through my unearthing of the names, places and photographs my parents had thought lost to us.

Dredging up documents of the births, deaths and marriages of my kin was a powerfully reaffirming activity at a time when I knew only uncertainty. I was trying to start a family of own and the path was neither short nor easy.

In time-worn family tales, I always wait to hear a hint of me, of the family I grew up with, in the character, personality and mannerisms of the now-absent players.

Because I am not so alone if I carry with me reminders of my relatives, both real and imagined. The signs are not visible to others, but what’s important is knowing they are there.

I wonder, do I sing like my mother’s mother, so famous in her day for the beautiful duets she sang with my Pa? In days when people used to gather and sing long into the night for their intimates; heartfelt songs of romance and longing now imagined in black and white, like the images of my grandparents as a young couple.

Or do I look like my grandmother on my father’s side? Is there something in the darkness of my eyes that recalls her to the few people left to remember? Or the fall of her hair in soft waves down her shoulders? I like to think so. I loved her laugh – deep and throaty – but I know it is nothing like mine.

Or is she more like my daughter Amelia, who crooks her pinky finger when she lifts a cup to her lips, a mirror of her great-grandmother’s well-known gesture? I stare at her and laugh when she does it, because it takes me straight back to earlier days, when my grandmother was still alive. Amelia channels her without being aware of the echo her movement creates.

It doesn’t really matter to me if these are just a set of romantic ideas that would not pass the acid test of objective scrutiny. I believe that I can draw a strong, clear line from my grandmother, to me, to my daughter and find that we form a triptych of family resemblance:

My Grandma

Me

Amelia

We three, to me, are like peas in a pod and our bond stretches across generations.

I also believe in the power of names to create connections that have all but vanished. My father’s maternal grandmother’s name was unknown to us for a long time. Her story was another mystery but I pieced some of it back together, along with her age when she died (46), her name – Annie Isobel – and the location of her gravesite in a cemetery a mere stone’s throw from my house.

A band of us (my Dad, Mum, husband, older brother) picked our way through the rows of graves one April day and found the plot after much searching. It was a rugged spot, neglected, the surface pitted and rocky like the moon. More dumping ground than resting place, it had no gravestone. I went looking for my great-grandmother and found what amounted to a pauper’s grave.

Was that because Annie did not stay married to my great-grandfather and was buried with her lover? Perhaps no-one wanted to draw attention to the scandal of it. Or maybe she caused deep hurt to the people left behind so she was punished with the ultimate act of forgetting. It is impossible to know.

Bland historical documents leave no clues to the pain of broken relationships and the true cost to the families involved, even many decades later.

Regardless, it is depressing to think that there was no-one left alive or sufficiently moved to arrange a decent burial for her.

With no marker to remind us where she lay, Annie was in death as severed as a person can be from their family tree. But I feel like we recovered her that day and brought her partially back into the fold. We found her again because someone remembered and cared to look.

Soon after I found out I was pregnant with a little girl and my husband and I went through the enjoyable ritual of name choosing. So much time is spent worrying about whether you’ll ‘get it right’. What will the name say about you and who you are as individuals, as a couple, as a family?

What I knew for sure is that I wanted to resurrect something personal to Annie and mark it properly this time. So, I took her middle name – Isobel with an ‘o’ in the Scottish tradition – and gave it to my daughter when she was born. They also share the same first initials, AI, and I think that is very fitting.

I don’t know what Annie Isobel was like and I have never even seen her photograph. As far as I know, they’re all gone. But she’s still an important part of my family, and so Amelia – my proudest achievement – is a living reminder of someone lost but no longer forgotten.

[for MA, acupuncturist extraordinaire, who inspired me after our talk of names and what they mean to us]

Going the distance

Whatever you do, don’t drop the baton

Parenting sometimes feels to me like an extended relay race with multiple batons – let’s call them challenges, diagnoses, worries, crises, whatever fits. You think you can hand one off as you grab for the next one but it just doesn’t work like that.

No, you end up carrying them all in a messy jumble and hope like hell they don’t come crashing to the floor.

Over the last four years, every time my husband and I have thought we could genuinely release one of our worries, we have gained a new one. The load lightens for a minute and then our hands are full again. We never know what hurdle is waiting for us around the next corner.

I am a keen recreational runner in my spare time, but this parenting race I’m running feels like a gruelling marathon that I’ve barely trained for. There’s only so many times you can ‘hit the wall’ before you feel like stopping.

It’s not always lonely – there are other people on the same track – but ultimately it’s your legs and willpower that must carry you over the line (if you can find it). Sharing your burdens might halve them in size, but you still feel the weight of them on your back, in your chest and on your mind.

To re-cap, our experience as Amelia’s parents has so far included a minor kidney defect identified in utero, developmental delays (gross motor, speech and language), deafness and the newly identified Autism Spectrum Disorder.

And I used to think running up Anderson Street next to the Melbourne Botanical Gardens was hard.

From birth to her second birthday, doctors and nurses planted seeds of worry in my mind about Amelia’s achingly slow progress to crawl (13 months) and then walk (21 months). Though more than fashionably late, she found her feet eventually and I let out a long, slow breath of relief. I remember the thought, ‘Now they’ll leave us alone to get on with living’.

When Amelia was two, we went to see her paediatrician for a final kidney check-up. I distinctly recall how great it felt when he gave her the all-clear – her kidneys had grown to their proper size and the minor defect had corrected itself naturally.

So, no more ultrasounds or trying (and failing) to get urine samples when she had a high temperature. Consider that baton passed.

In the same appointment, the paediatrician asked Amelia to come over and talk to him at his desk. He was holding a rabbit toy and he wanted her to tell him where the eyes, ears and mouth were.

At first she was happy to stand and look at the rabbit but she became confused by his questions and quickly ran away to the safety of the play corner.

That’s when he said to us, “Well, I don’t think she’s autistic, but there is something wrong with her”.

At the time, the suggestion of autism seemed absurd; this was a happy, engaged child who made eye contact and seemed to have great empathy for others. It was a part of our child’s future we were not at all ready to face.

But despite his sledgehammer approach, I knew the paediatrician was right. There was something wrong – Amelia was two and she could hardly speak – but I had no earthly idea what it might be.

I feared yet another developmental delay but he referred us to a speech pathologist and flagged the need to test her hearing (routine for speech and language assessments).

We’d handed off one baton and gained another, all in the space of five minutes. I think we deserved a rest stop or at least a drinks break or something.

After talking to a GP, I was convinced that Amelia had too much fluid in her ears from infections and would only need grommet surgery to free up her middle ear and allow the clear passage of sound.

This type of temporary hearing loss (conductive) can be as catastrophic for speech and language acquisition in infants as the more permanent kind. I grasped onto the idea a little too tightly and put all my hopes in it.

I thought we would go to the hospital and our problems would all be sorted out in a matter of months. Then, my family would be back on track.

Sadly this is not what was proven by the Ear, Nose and Throat Surgeon or the audiologists who tested Amelia. She had no fluid. Her hearing loss was discovered to be permanent and irreversible.

I’ve covered in detail how this diagnosis affected us and the decisions we made as a result of it. It’s just the hand she was dealt. We can help Amelia to carry this baton for as long as she needs, but in the end it’s her race to run.

But sometimes batons aren’t thrust upon you when are looking the other way. There are occasions when you run after them, chasing down the truth with hands outstretched.

For about a year I have been the one pushing us headlong towards the unveiling of another challenge – one more problem below the surface as yet unnamed.

You’re gonna need a bigger boat

In this, I’ve been like Chief Brody in Jaws: I knew there was something else in the water even if sceptical Mayor-types kept telling me the beaches were safe. No really, send the children in with the shark because everything’s fine.

I had watched Amelia for a long time and I knew that deafness, even with her lack of speech, was not the reason behind her rage, social isolation, meltdowns, obsessiveness and curious anxieties.

We needed urgent help if we were going to get through the next stage of the race without the wear-and-tear of life’s pressures taking its toll.

It took us more than six months to get in to see the only paediatrician I thought might have the answers. She has vast professional experience working with both deaf and autistic children, so she seemed uniquely placed to guide us.

Her expertise and popularity made her nearly impossible to see, but our Early Intervention service wrote a letter on our behalf and we were fast-tracked to the top of the waiting-list for exceptional cases.

It was a killer letter but the picture it painted of Amelia’s struggles (and ours) was not easy to read, even if it was true.

I sat in the paediatrician’s office the first day and said, ‘Are we right to be here, do we need your help?’

I asked this because I still have this peculiar feeling – maybe it’s just plain old hope – that one day a doctor will look at me and say ‘What are you doing here, your child is fine’. It’s hard to explain how I can still think this way after the catalogue of trials we have faced, but I do.

But our new specialist just smiled at my question and said, ‘Oh yes, absolutely’.

We handed her our concerns and she took them from us and turned them into something useful, a diagnosis we can work with. The race isn’t over but at least now we know which way to go. Even if it’s towards more appointments and steep learning curves, we are closer to understanding Amelia now than ever before.

So we keep on running, from checkpoint to checkpoint, trying to refuel when we can and stay fit for the long haul. It’s not about the fastest time per kilometre and it’s never been about winning. It’s about stamina. And getting up to a decent pace each time you are passed another baton and making it. Just making it.

Of rocks and hard places

Even in harsh terrain a flower can bloom

I am reading Andrew Solomon’s brilliant Far from the Tree: Parents, Children and the Search for Identity at the moment. It’s about how families cope with having a child with a disability (mental, physical, social) and the loaded choices that sometimes result in crises of identity and domestic turbulence.

Naturally I jumped ahead to his chapter on deafness and it was, in many ways, a tough read. The stories of the families, particularly the personal accounts of the deaf children now grown up, are inspiring but often heart-breaking.

The stories describe so well the cost of the long-term battle waged around the two prevailing deaf education philosophies – ‘oralism’ (an emphasis on spoken language) and ‘manualism’ (sign language), and historical attitudes to deafness which have ranged from pride to shame.

Many of the deaf adults interviewed about growing up in this context had suffered exclusion, isolation, depression and real deprivation.

The book reaches back into the early-mid part of last century to today, proof that the tension between advocates of both approaches still exists, even if the rights of deaf people to use sign language and access deaf education in this ‘manual’ mode have significantly improved.

Solomon also tracks the splintering effect of identity that occurs with the majority of deaf children being born to hearing adults.

Something like 90% of deaf and hard of hearing children are born into families with little to no experience of deafness.

What do these unsuspecting souls know of Deaf culture? Of sign language? Of the complex mores and communication methods specific to a community they have had no exposure to, either socially or in the media? Virtually nothing.

It’s almost like some invisible hand decided to take all of the children born with a shared identity and scatter them far and wide, too far for that community to properly reach them and form cohesive bonds.

At the family level, it’s about something far more personal than that as parents try to work their way back from the shock of the unknown to some kind of understanding. They have to make hard decisions in the dark and live with them. There’s no right or wrong here.

There are, of course, many echoes of our personal story. We have no history of deafness in our family and yet we have a deaf child. We’ve been told there’s probably some genetic cause but it’s very difficult to know for sure. The ‘why’ of it is mostly a pointless exploration and offers no comfort.

Amelia can find out, when she is ready to start her own family, if she herself is carrying a recessive gene which she could pass onto her children. Already her little hands are laden with heavy baggage.

We were also faced with a choice, not of labels, but between diametrically opposed types of Early Intervention for deaf children, namely the oral language approach or a bilingual or bimodal philosophy which offers exposure to sign language, speech therapy and an introduction to deaf culture and communication. In essence, speech only, or sign and speech together.

No one held our hand through this philosophical maze, we just had to wing it and hope for the best. My family took the bilingual road which is neither high nor easy, but let me explain what led us there.

When I found out that Amelia was deaf, I had this odd feeling that part of her no longer belonged to me, but to something bigger, a hidden tradition I knew nothing about.

I also felt, almost instantly, that we needed to give her every possible avenue of communication available to her. She had lost more than two years of language, a time during which other children would have absorbed words and learned to process them. Instead, my girl had been stuck in a bubble, hearing sounds (at best) as though underwater.

Sign, speech, gesture, touch – whatever – I wanted her to have it all.

I refused to accept that sign language would hold her back in some way. This instinctive choice came up trumps because Amelia took to Auslan immediately (she’s not short of expressive gestures) and was suddenly able to translate her thoughts and feelings into something meaningful. And she could learn.

Speech, language and listening skills take much longer to develop and we just didn’t have any more time to waste. Developmental windows were closing, so we jumped on through with two languages to give Amelia the boost she so desperately needed.

I also wanted Amelia to be a part of that ‘bigger something’, that other family I suspected had at least a partial claim to her. If we were to embrace her difference I thought we could also open a door to a place where she was the same, just one of many in a crowd.

My thoughts about Amelia’s so-called ‘otherness’ were brought home to me in a bittersweet moment when my Mum and I took her to her first Early Learning Group run by our Early Intervention service.

It was terrifying, really. We entered a room where everyone seemed to know some sign language and there was a Deaf Educator, JC, co-running the sessions. How would we talk to her? My Mum and I were like rabbits caught in blinding headlights but we pushed through our sizeable fear. For Amelia.

JC was quite aware of (and probably used to) our discomfort, so she didn’t approach us directly at first. Instead, she strode confidently towards Amelia, then only two years and a few months old. Amelia was not a trusting child then and we had never been to this place before so I did not expect her to be relaxed about this approach.

I was so wrong. JC tapped Amelia softly on her arm to get her attention and signed at her to follow. Amelia held her gaze, watched her hands avidly and then followed her like she was caught in a tractor beam. I watched this from the safety of a corner and felt a curious mix of emotions wash over me.

It’s hard to explain, but I felt tears well up in my eyes at the pain of seeing Amelia bond so quickly with this stranger, the first deaf person she had ever met, and with thankfulness and relief that she had been so welcomed by one of ‘her people’.

However strange or overstated that sounds, I have witnessed the positive evidence of Amelia belonging to a culture other than her own family’s many times over.

JC became Amelia’s kinder teacher last year and they were soon inseparable, often found working together on some secret craft project or sharing a story in Auslan.

Amelia showed a clear preference for her non-verbal communication with JC. She spent very little time with the hearing teacher or even with the other children. Amelia learned a lot from JC, about how to express (and explain) herself through sign and how to touch another deaf person to get their attention.

I see the same easy bond when Amelia watches adults signing in the Cochlear Implant Clinic waiting room – there’s a spark of recognition as she watches their hands moving through the air in rapid-fire conversation. She smiles as though reassured by their presence.

When she walks into her deaf kinder class I can tell she is truly at home. Because in that room, all of the children are deaf and she is not the only one who signs. Amelia likes her mainstream kinder okay, but after a term the votes are in and she never stops asking me when she’s going back to ‘lunch kinder’ (so named because we make her lunch together and pack it in her bag).

At pick-up time, Amelia does her routine farewell to the teachers in sign and comes home to me, full of confidence and something not far from elation. Because she belongs.

It’s a great feeling to see your child settling in so well at a new kinder or into a way of being that feels right to her. But I do still feel a little wistful that she is experiencing that powerful sense of fitting in with people other than us.

On this clash between Deaf identity and family, Andrew Solomon quotes one of his deaf interviewees (Cheryl Heppner), saying: ‘Deaf people feel ownership of deaf children…I really struggle in not wanting to interfere with a parent’s right to parent, at the same time knowing that they have to accept that the child can never be one hundred percent theirs’.

I think I have accepted this idea, at least in theory, but surrendering any part of my child’s life will never be easy, no matter what the future holds. Every parent understands that.

But I hope that our choice of a bilingual education might allow us to move between both worlds, rather than having to give Amelia away to one, or hold her in another.

We chose ‘manualism’ so that Amelia could tell us straight away what she needed and also to give her a passport into the Deaf community if she decides to visit later. Her enculturation into this world is well on its way.

Amelia watches JC with rapt attention

For us, that choice sits in harmony alongside our hopes that she will learn to speak fluently too and be able to participate in the hearing world as far as she wants to.

If ever I worry about the decisions we have made on Amelia’s behalf, I remember the teenager I once spoke to about her story, which included profound deafness, cochlear implants and an intensive oral language education – she was the quintessential poster girl for oralism.

She blanched at my question about whether she identified as ‘deaf’ and was justly proud of her ability to speak and excel in the hearing world. When I said to her that Amelia was learning to sign – something she herself was just starting to try – she said, “Oh yes, give her sign, give her everything”.

As a parent, that’s really all I’m trying to do – give her everything to help her now and prepare her for later.

Because deaf children have a right to all worlds, not just deaf, not just hearing.