Art therapy – dénouement

Amelia artwork # 868 (limited edition, unsigned)

Amelia artwork # 868 (limited edition, unsigned)

It’s been six weeks since Amelia started her Expressive Therapies sessions with JM and it looks like the program has reached its natural conclusion.

The aim of the program is not to make children dependent on their relationship with the therapist (she’s not their friend) or the act of attending each week. It isn’t kindergarten and she’s not grooming little Picassos.

The ‘bridging’ that JM has tried to facilitate, is between Amelia’s subterranean interior world (40,000 leagues under the sea) and life – family, friends, events – played out above the horizon.

I don’t think it’s possible to make grand statements or draw firm conclusions about the outcomes yet. But, Amelia does seem more present to me, a little less manic and slightly more patient. The biggest challenge is to see how far she can control her emotional pendulum from swinging to extremes.

During last week’s session, Amelia created the picture shown above, spending a whole hour perfecting it. She worked determinedly and did not break her concentration or leave her seat. For JM it was an excruciating wait for the creative muse to finish its flow through my daughter, but I love how full of colour and verve it is.

Later that week, she went with her kinder class to a farm and excited everyone with her joyous participation in the outing. In broken speech, Amelia told me all about how she was gentle with the rabbits, that her favourite animal was the horse and how funny it was that everyone fell asleep on the bus except her.

Because she was too jazzed, too alive to this new experience, to waste it with sleep.

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First name Amelia

Amelia considers the road ahead

Amelia considers the road ahead

In the months following Amelia’s diagnosis of hearing loss, I picked up a strange habit when introducing her to people we met in our daily travels. Like an involuntary verbal tick, I would call her ‘deaf’ before I said her name or anything else about her.

This new tendency was the result of many obsessive days spent reading about what the diagnosis meant. Suddenly a host of alien words had intruded on our lives and I drove myself mad trying to work them out.

At first I wasn’t sure what term to use to describe the diagnosis itself. There was the medical vocabulary: it was a sensorineural, (most likely) congenital, bilateral, moderate-severe/profound hearing loss. To the lay-person, this roughly equates to ‘nerve deafness’ in both ears from birth.

These definitions were cloaked in the mystery of a clinical world we had arrived in but did not yet understand. They were cold and impersonal but I found I could practice saying them, turn them over in my mind and get used to their presence.

The words I was really scared to speak out loud were the more commonly used descriptions like ‘hearing impaired’, ‘hard of hearing’, ‘deaf’ (people who have a physical condition of hearing loss) and ‘Deaf’ (people who use Auslan; identify as members of the signing Deaf community).

Or disability – that one was like acid on my tongue.

I tried them all on for size, testing the degree of pain they elicited in me. It only took one syllable to break me back then.

My fixation on nomenclature was really just my way to grapple with what was happening to us. Our situation felt more real (and not like some nightmare starring Max Schreck) if I could give it a name.

I settled on ‘deaf’ because ‘hearing impaired’ is regarded negatively by members of the Deaf community who prefer the terms ‘Deaf’ and ‘hard of hearing’ (and I am such a stickler for the rules).

‘Hard of hearing’ just brought forth the image of an old man straining to hear through an ancient ear trumpet. We did not yet use Auslan and had no ancestral or existing links to the Deaf community.

So in the end it was deaf with a little ‘d’ that felt about right to me.

Amelia had just turned two years old, so no-one asked her what she thought about this. She couldn’t have told us anyway because the terms that so consumed me were simply lost on her.

I am a little ashamed to admit that once I decided I was okay to call Amelia deaf to myself, I just couldn’t stop flinging the word at complete strangers, usually without necessity or context.

I was probably a little deranged by grief, but I gave little to no thought or consideration for my girl – the deaf one – and how it shaped her identity.

One day we walked into the chemist and the saleswoman leaned over the counter to look at Amelia tucked in her pram.

“Oh, she’s so sweet! Hello little girl, what’s your name?”

Like a Venus fly trap, I snapped her question in half with, “She can’t hear you, because she’s deaf…”

I said it callously, as though she should have known it just by looking at Amelia. It made the woman flustered and uncomfortable and on some sick level I was glad.

It was a perverse thing to do but I repeated this routine often with people who were new to us. It was my conversational trump card. I used it to provoke sympathy, to disconcert people, or to neutralise their judgement (she’s not naughty, she’s just deaf). One more time for the cheap seats.

What I think I was trying to do in my desperation was prove that I was not ashamed of Amelia’s deafness. I pushed it into people’s faces so they would have to deal with the fact we could not escape ourselves. I might as well have propped a sign on her pram saying ‘deaf child on board’.

For a time, I simply forgot to encourage people to see Amelia beyond the feature that was actually invisible to them – her deafness. Inadvertently, I boxed her up and labelled her because I was the one who couldn’t see past it.

Thankfully it was just a phase I was going through to deal with the shock and the grief and it didn’t last. I explained my behaviour to Amelia’s Deaf Educator, AH, and she seemed to understand what was happening and why.

She gently told me not to worry about other people and to think of Amelia and her needs first, before the deafness, before anything. That was all that mattered, not words.

The fact is I was (and am) extremely proud of Amelia’s deafness. It’s anomalous that the thing that almost destroyed me was the same thing that made her more special in my eyes. But I realise I did a huge disservice to her to have made ‘deaf’ the opening number, before people had a chance to hear other songs in Amelia’s repertoire.

There are many ways to honour that unique part of who she is, through learning Auslan and establishing relationships with deaf adults and children, without consigning her to an all-encompassing label.

In some situations it is absolutely necessary to let people know that Amelia is deaf to maximise her social interactions (background noise is too loud, don’t stand behind her and speak).

If someone asks about her hearing aids or her sign language then I am happy to go there, but there’s no reason to keep assailing people with her deafness on a regular basis.

While I have made a decision to use one word among many to describe Amelia’s hearing loss, this may not be her preference later on. In my experience, not all young people with a hearing loss identify as ‘deaf’ or even ‘hearing impaired’; it’s a complex choice based on many factors I’m only just beginning to comprehend.

One day, Amelia might tell me that she has a different way of explaining her deafness (and herself).

I have no idea what that discussion will be like, but I want to be sure to tell her that I now see her deafness as only one important part of who she is: my girl who is blonde, powerfully strong, mischievous and loves to dance even when she can’t hear any music.

When she is old enough, I also want her to watch this brilliant video posted on YouTube by Bethany, a teenage girl with a cochlear implant called ‘MUSINGS ABOUT BEING WHO I AM – Deaf or Not.’ It says so much about the limiting effects of labels we don’t choose for ourselves, the genuine pride that leads parents to insist on them and the need to take ownership of how we present ourselves as individuals to the world.

Bethany says: “So this is me. I am deaf. So guess what? I can still do anything. So why should it change your opinion of me?”

Why indeed.

[This post was re-blogged by The Limping Chicken, the UK’s independent deaf news and deaf blogs website]

You (Quite Literally) Can’t Touch This

You can look, but you can't touch

You can look, but you can’t touch

Soon after Amelia was born I could sense that my baby didn’t like to be cuddled or held too close. She was content to be carried from point A to B, held for feeds or to perch on my knee. But if I overstepped some invisible marker known only to her, she would retreat from my overbearing hands.

There was a veil between us, barely perceptible and made of obscure materials, but I felt its presence keenly. I was so desperate to nuzzle, encircle and possess her – to bond – but she resisted my approaches decisively. It was hard to shake the cruel feeling of my own child’s rejection.

Then we learned that Amelia had been born with a significant hearing loss and I thought “Aha! THAT is why my darling child and I have not bonded fully, because without sound, without her hearing my voice and recognising in it the tone of tenderness, comfort and affection, she has kept me at arm’s length. I understand now”.

I came to learn that touch is essential to communicating with the deaf – from the day we were told about Amelia’s hearing loss, I never stopped putting my hands on her, reassuring her of my presence, alerting her to my responses and guiding her eyes to my face, my mouth, my expression.

This type of touch was no less intimate but it was coded with a greater function than mere affection. I could reach out to my daughter with this new physical ‘language’ and so our bonding started anew.

And yes, through sound, through crazy operatic songs belted out in the kitchen, and laughter in Amelia’s hair with my head bent there, we became mother and daughter properly and fully.

But though the veil had slipped, it did not disappear.

Even now, in the warmth of a shared bed if my hand strays to her leg or her belly, she will remove it in a prompt rebuttal of unwelcome contact (“Don’t touch it!”). If she is ill or falls over, bangs her head even, I am not allowed to react or offer to ease her pain. She would rather bleed than let me mother her like that.

But over the years we have worked hard to show Amelia what affection looks and feels like. We have never stopped modelling it and offering it, no matter how often it is refused in anger or with indifference. Hugs are on permanent parade as are kisses, snatched from her during unguarded moments. It’s intimacy by stealth, by degrees.

Lately we have discovered that our girl does not dislike being touched as much as we had thought, but the idea has to germinate in her brain and heart first. It’s her dance card and she’s not giving waltzes away for free. She’s worked her way up to it from some shy corner, emboldened by good feelings and ever-warm responses.

In quiet moments, when she thinks we’re half asleep, she might reach up to softly stroke a cheek or press a tentative kiss on our lips. We hold our breath lest we scare the horses with our need, our hearts racing inside us with fierce longing.

Two years ago, Amelia seemed not to notice that her Dad had gone away for over a week. There was no childish fanfare to greet his return; there was not much reaction at all. Now, when I hear him coming through the front gate I sign to her “Daddy’s home!” and she tumbles out the door in her haste to greet him and throw herself into his outstretched arms.

Most nights she will pull me close to her at bedtime in a long, passionate embrace (I never break first). We are firm couch companions, sitting shoulder-to-shoulder, with her legs slung casually over mine. I rest my hands on her jiggling feet and she does not pull away. This contact, its nature and duration, remains at her bidding, but I feel such joy whenever it occurs.

Amelia doesn’t know that to us it’s like electricity, like magical lightning strikes on our skin, to feel her touch offered without restraint. That we turn our cheeks away from her eagle eyes so she won’t see the tears so often spilled there, because with each contact – no matter how small or incidental – we receive a strong signal of love.

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.

‘The secret is in the hands’

I stumbled upon this interesting story from Deaf News Today: The Secret is in the hands based on new research by Stanford University, looking at ‘tells’ in poker. It would seem that even the best poker face can be betrayed by the unconscious movements of the arms and hands.

Here’s my favourite quote from the article: “To best understand someone, don’t look at their face, look at their hands”.

Amelia’s beautiful, expressive, signing hands tell me so much everyday, so I couldn’t agree more.

A letter from my mother

I’ve been thinking a lot about grief and loss lately, how it takes many different forms and the ways in which it alters a person who has been through a radical, life-changing event. How people cope with these events and work their way through the mire will be a recurring theme in the pages of this blog.

Recently, I wrote a lengthy post about the day back in 2011 when Amelia’s hearing loss was first discovered, but I decided against publishing it because it was a bit too close to the bone. In that case, the writing of it – the getting-it-off-my-chest bit – was the point, not the need to share it.

The snapshots of that day – the car ride to the final appointment with dread knotted inside my stomach, the grim formality of the hearing test as my baby tried valiantly to please the assembly of adults, uncontrollable tears shed inside hospital corridors – are, I think, sufficient to describe the pain I felt back then.

During the months that followed, it was like I was split into a number of distinct selves, all coexisting inside a grieving whole.

One part, the purely physical, peeled off to meet the demands of the day – getting out of bed, having a shower, feeding my child (maybe even myself), responding to basic questions and just keeping the family engine running. Life doesn’t stop just because your heart is broken.

Another part was the intellectual self which mobilised to attack the diagnosis head on. There was the navigation of medical appointments, reams of paperwork to be interpreted and filled out and masses of reading material on deafness to analyse and dissect. My mind sought to regain control over the grief by mastering information. I devoured it all.

The final part that was left over was submerged somewhere during the day, waiting, while the business of life and the post-diagnostic reality marched on. It was that fragment of me that splintered off in the testing booth and couldn’t be fused back on in a matter of days or weeks.

When the day was quiet again, I found a private place to let that shattered self have her grief in spades.

What I also remember vividly about this time is how much I needed to be with my Mum, to just sit in her familiar house or in her arms and be a child again, free from the worries of adult life.

Inside your own grief, you don’t necessarily notice the residual effects on the people closest to you. Grief is naturally selfish and mercenary like that.

Of course my Mum was suffering but what I didn’t realise is that she had written her pain down in a letter to herself, the night we all stepped off the edge into Grief Town.

In the letter, she retraced her steps to the start of the day before she heard the news from me (yelled down the phone from my car). Then she wrote about the moment when I told her that Amelia was deaf, about her feelings, her sorrow, as she stood in a car park trying to work out how to reach me fast.

The specific contents of the letter must remain between us, but it charts my Mum’s own sense of loss (what the news meant for Amelia’s life) and all the signs she now recognised (things about Amelia’s behaviour that suddenly made sense).

She wrote ‘wrong’ and ‘sorry’ many, many times. But it ended in hope, with the conviction that our dreams for Amelia would return.

I didn’t know about her letter until she mentioned it to me a little while later. Naturally I asked her if I could read it. Instead, Mum handed it to me, saying it was now mine to keep, to be read in my own time.

That night after the daily routine was over, I sat down by myself and unfolded the letter. It moved me so much to read the pain-filled words of my beautiful mother, rent across those pages in a frantic staccato that resonated so deeply.

She was trying (as I am here) to capture something difficult to nail down, to make sense of what we’d been told, to unburden herself and work it through. She did not know it then, but her words, as much as her arms around me, were the greatest gift to the part of me that was heartbroken.

Because my Mum got it, she understood the meaning and the cost of what had happened to our family. I didn’t have to explain my darkest, saddest thoughts because they were mirrored on the pages in front of me. They were shared.

The isolation of grief is founded on the distance between your own feeling of sorrow and others who can’t relate to its depth or impact. It’s not that people don’t try or want to connect with you. It’s just that the ‘thing’ is happening to you in its own, individual way and so you are essentially alone.

You can be in the same house of pain as 10 other people but eventually you have to return to your own room.

My Mum didn’t know that when she captured her own grief, committed it to paper and delivered it into my hands that I would feel a little less isolated than I did before.

It’s that same feeling I get when I communicate with other parents in similar situations to ours. There is an innate, shared understanding and in that I find great solace. I hope that anyone who has experienced grief for whatever reason finds others along the way to join hands with in solidarity.

So by way of return post, this is my response to that special letter from my mother. She didn’t write it to me or for me in the beginning but it is mine all the same.

I want to tell her that I carry it with me every day and sometimes I take it out and hold it in my hand without reading it, because just knowing that it’s there, that SHE is with me, made a difference to me when I needed it the most.

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.