Eyes wide shut

Amelia ‘papping’ the Pa-parazzi (get it)

WHEN I look at my daughter Amelia, I see lots of things. I see a wonderfully healthy, milky-skinned towhead with dark, dark eyes.

My eyes rest on her all-terrain body some days and I conjure up images of her in a field, pausing from her work to glance at the sky, the sun, like a stocky Russian peasant, built to withstand the elements.

Come rain, hail or shine, Amelia was made differently to most people, but man was she made to last.

Through my eyes, the most subjective of prisms, she is the most beautiful child I have ever seen. If I look at her for an hour, a month, a year, there will never be enough time to really see her.

I love to look at Amelia’s blonde hair falling in rolling, lazy waves down her back. Tucked behind her ears, some days it’s easier to see that she is wearing hearing aids. To see the physical sign of an internal part of her that doesn’t work the way it should.

Her autism is not so obvious to the naked eye. It’s not etched on her skin or reflected in some mechanical appendage that helps her to think or feel. Amelia doesn’t wear a t-shirt reclaiming the word ‘Aspie’.

You can’t see her autism in obvious ways, but I always know it’s there. I see it in her face sometimes, when her gaze drops below mine, and try as I might to regain her attention, she’s quietly slipped off to some interior room, far from me and my ever-prying eyes.

No matter what the signs – violent temper, crushing anxiety, rampant hoarding – I see autism but I still see Amelia. I never lose sight of her, working so hard to push her little barrow uphill. I see all that she is and I feel I truly know her. I know her and I understand.

Amelia has many people in her life who look past her ‘special needs’ and see only what is genuinely special. What is unique about her. The madcap sense of fun, the tenderness, the infectious lust for life.

What they see is mirrored in my own eyes and in my heart. That mirroring gives me strength and so much joy.

Yet now and then in our travels I am forced to view Amelia the way that other people sometimes do and it makes me turn my face away. I can’t bear the sting of their unforgiving eyes boring holes of judgement into her. Into me.

When she is suddenly, inexplicably loud or clumsy or different – incongruous – in a public space, I feel strangers’ eyes flick up and cast their reductive light over her. Mouths curl up in a mute grimace of distaste. I read their looks and expressions and interpret the words left unsaid.

‘Oh, what a weird child. Look at the naughty child. What on earth is wrong with that child?’

And who am I? It’s simple: I’m the bad parent.

I hate those staring, ignorant eyes because for a second I step outside myself and I judge Amelia too. In that moment I see only her flaws, the things that cannot be contained or controlled. And it hurts my heart.

My inner voice pleads with her, ‘Please won’t you just be calm? Why can’t you walk properly? Stop yelling, just stop it!’

‘Why can’t you just be normal.’

Then there are the people who don’t see Amelia at all, who have trained themselves not to see what is different about her and to try to understand. They focus their eyes on the wall above her head or on the easy going child instead.

They ignore her and I despise them too.

Because they looked at Amelia, but they did not really see her. They saw only gaps and lack and the spaces in-between where a different child might be. And they decided things about her that are only a tiny fraction of who she is. Who she will grow up to be.

I’m not blind to the hardships looming up behind Amelia like a shadow she can’t shake. I know she is sometimes rough and strange and hard to take. I know that because I see how being around Amelia makes some people feel: uncomfortable, nervous, frustrated.

It’s written in their eyes.

But I can’t let those looks and the thoughts that sit behind them slip under my guard too much. They strike me in my nerve centre, and I absorb little shocks and bouts of pain, but they do not defeat me. They could never.

For me, there is always great solace to be found in looking up and seeing Amelia again, maybe running down a path to meet me after time spent apart. She throws her glorious head back and yells my name at the sky and I see only beauty and all that is right.

There are no shadows here, save the ones cast by the sun, warming the head of my sweet peasant girl with her golden hair and those dark, dark, eyes.

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Waiting for God knows

Waiting rooms. For any parent, they’re the lowest rung on the ladder straight to hell, aren’t they? If you want to replicate purgatory on earth, go ahead and turn up the volume on an episode of Ellen on the medical clinic television, especially the bit where she dances. Kill. Me. Now.

I’m a bit of a veteran of medical waiting rooms, cubicles, and hallways as I have dragged my daughter Amelia across town to see the specialists and therapists we consult about her deafness and autism spectrum disorder.

If she has nightmares, then I suspect they are set in a dark, cold ante-room embedded in a doctor’s surgery where there are no doors or windows and everybody has dead, staring eyes filled with condemnation.

Or maybe that’s just me.

Because I loathe them so passionately, so completely, that I begin to dread them hours before we’ve been formally introduced.

The awful ones we must return to regularly loom in my mind like a familiar foe, and not in a cool way like Moriarty (as interpreted by Andrew Scott in the recent TV series Sherlock).

A quick recce of the set-up in one of these places and you just know how far into the mouth of hell you are going to fall.

Common to the worst examples are big, echoing rooms, with no warmth, colour or anything resembling child-friendly comforts except a monolithic, flat screen TV perched aggressively on the wall. With the sound cranked up to 11 and it always seems to be Dr. Phil o’clock.

I tend to think if a big chunk of your clientele is small children, there’s no excuse for only having a few weather-beaten Little Golden Books and two mangy looking toys slung in a corner to divert the attention of sick, anxious and/or bored kids.

The better waiting rooms on our roster have managed to create a discrete waiting area within the main one that is targeted at its paediatric patients. The best ones will have dedicated a whole room to this purpose.

It doesn’t take a lot of money or architectural redesign to cordon off a little space, make it bright and engaging and fill it with second-hand books and games to distract children from the typically long wait to see a busy doctor.

Without the promise of something, anything, to help divert Amelia’s attention from the loud noise, hostile atmosphere and the stressful examination waiting for her, I know I’m on a hiding-to-nothing.

There will be one or more of screams, meltdowns, tears, frantic escape attempts, disapproving looks (from Amelia and the adults around me), and often the whole shebang.

In short, there will be blood and most of it mine sweated through pores or springing from cuts sustained trying to put my darling child-genie back in the bottle.

As parents, we’re not asking for the world, just some safe territory – an island if you will – that signals the welcoming support of the people and places we invest so much time, hope and money in.

But in the mix with the dreadful, the so-so, and the pretty good I have discovered the gold standard, the Ferrari of all waiting rooms, and it’s inside our new Occupational Therapy (OT) clinic.

Of course it makes sense that a place like this one, which specialises in helping children like Amelia who are dealing with serious challenges, would take extra care in the design of its interior spaces.

But this waiting room benchmark honestly took my breath away. Set apart from the front reception area, it is situated around the corner, occupying its own quiet, judgement-free space.

In fact it is made up of two areas, the first being a corridor with book-shelves and chairs for the parents. And then, nestled into the t-section of the hall, there lives the WAITING ROOM TO BEAT ALL WAITING ROOMS.

It’s dark and quiet and it has a pirate tent in it. That already puts it in Amelia’s top 5 spaces to love list. Need more? How about huge, billowing cushions and pillows of vivid colours not seen since Gene Wilder so dazzled film audiences as Willy Wonka (please don’t mention Johnny Depp’s Wonka to me. Ever).

Two large, wicker boxes hold further curios and delights, like torches to light the way into the pirate den or soft fabrics and toys for the more tactile child customer. There’s also an egg-shaped chair that swivels and has a cloth lid that pulls down to obscure the seated party.

Things to touch and places to disappear – Amelia took one look and fell head over heels. Then in true hoarding style, she dragged most of the contents of the room into the tent and I didn’t see or hear her again until it was time to see our OT.

The space made her feel instantly secure and it kept her busy exploring and hiding for as long as was needed. I’d call that mission accomplished.

The therapists at this clinic don’t seem to keep people waiting more than 10 minutes but somehow they’ve already made waiting the best part of the appointment, not the worst.

It’s fanciful and unrealistic to expect other places to have such purpose-built waiting rooms for kids, but if I walk in and see that your centre hasn’t thought about children at all then I’ll just assume you don’t care. About me, or my child.

Think about how that makes people feel and then maybe try for an upgrade. It doesn’t have to be as stylish and flashy as a Ferrari, but there are plenty of good, second-hand cars on the market that will take its passengers to the same welcome destination.

Then we’ll really know we’re in safe hands.

What happens at the park, stays at the park

The calm, solitude of time spent at the park

The calm, solitude of time spent at the park

Having a child who is deaf has mostly hardened me to the questions (well-meant and not so much) that people tend to ask in shopping centres, waiting rooms and other public spaces when the topic comes up in passing conversation.

In an earlier post, I covered some of the so-called ‘dumb’ questions that we encountered in the time following Amelia’s diagnosis.

Since then, I think I have developed a second, tougher skin that has helped to guard me against genuine offence or my own hyper-sensitive reactions.

Two years down the track from the moment we emerged from the chrysalis of one life pre-diagnosis and emerged somewhat bruised into another, I have developed ways to evade questioners when I’m not in the mood and found better ways to answer them when I am.

It really all depends on the day, which way the wind is blowing and the nature of the approach. If a person is having a good old Aussie crack at trying to understand something new, then clumsiness is certainly not a sign of bad intentions. It just means they have minimal exposure to the intricacies involved.

The keys to ‘getting it right’ are the demonstration of qualities like restraint, thoughtfulness and compassion from the questioner. Questions themselves are not the enemy – a communication started with care, that is watchful of the signs about how the questions are being received, is less likely to tread on vulnerable toes.

I’m not hanging around waiting for people to ‘get it wrong’ so I can rain blows of righteousness down on their heads. Well, I used to be, but now I’m more interested in solitude on those days when Amelia and I can just be, without questions, tests, diagnoses and labels disturbing the peace. Yes, solitude or privacy or anonymity, even when we’re in public.

So I’m not exactly sure why I was so bothered by the woman – a fellow mother – I encountered last week at the park where Amelia and I went for a run in the winter sun. But there was something different about the way she came at us, with her machine-gun mouth, poised to fire as many questions at me as she could muster before it was time to re-load.

It was, on reflection, a combination of the level of her intrusion into our hard-won solitude, her condescending tone, her incessant questions and her lack of reading of my mood – in my eyes, my voice, my body – that made me feel that enough was enough.

I’ll try to keep it short, but here’s how our meeting played out.

I was signing something to Amelia as we walked over to the swings and this woman, also with her kids at the swings, said to me, “Oh it’s really great that’s you’re teaching sign to her”.

It’s not unusual for people to remark on our use of Auslan – I understand that it is a novel sight, and to many a beautiful language to behold, so I don’t mind being asked about it.

Usually once people have chatted with me about the topic and some related things for a few minutes, they move on to the busy job of watching their own children navigate the pitfalls of the playground.

And then Amelia and I are free to return to our blissful solitude.

To this woman’s opening question, I replied, “Yes, it’s really important for us to sign with her”.

My response seemed to confuse her for a second, but I wasn’t sure why. Then her tongue tripped awkwardly over the words, “Oh right, does she have some kind of disability or difficulty…or something?”

“Um, yeah, she’s deaf, so she is bilingual – she speaks and signs”.

“Oh, right, ok, wow”.

“Yeah, I wouldn’t choose to sign with her unless it was a necessary part of her life”.

It dawned on me that she had not been asking me about sign language because she immediately associated it with deafness – as the language of the Deaf.

No, she was congratulating me because there are people out there for whom teaching ‘Baby Sign Language’ (not Auslan) to their infants is an optional luxury, not a necessity or a defining part of their child’s identity as it is for us.

That’s a new one, I thought. This was the first person not to assume that Amelia was deaf after they saw her signing. It was an odd start and it went downhill from there.

The woman then began peppering me with a barrage of questions over the next 15 minutes about the diagnosis, my feelings, behavioural problems, hearing aids, deaf primary schools, and on and on. It was more interrogation than conversation.

There were no queries about my daughter’s age, name, habits (standard park chatter), just an endless quiz about her deafness. I tried in vain to steer her away from the topic, to avoid her, but it’s a small park and there was nowhere to hide.

She also ventured a number of uninvited statements about how she imagined Amelia’s deafness had affected me, such as “Ohhh, how heartbreaking for you,” or “You poor, poor thing”. I don’t think I cut a particularly forlorn figure at the park, but what do I know?

It all went way past my personal mark of ‘too much’. It’s an invisible line, sure, but most people seem to know where it is.

My answers became increasingly brief, curt, I turned my back, anything to send the signal that the subject was closed, but she wasn’t reading me and I didn’t want to have to be more explicit. I just didn’t feel like expending the energy.

When she wasn’t speaking directly to me she was in the background loudly telling her kids all about Amelia, the deaf girl. She adopted an affected teacherly tone to say things like “Honey, do you know what DEAF is?” Then she reminded them about a story featuring a deaf turtle from a book they had at home. It was excruciating.

I just kept thinking, dear god, please make this woman go away.

Thankfully, a parent we know through Amelia’s childcare came over and started talking to me about ordinary things, which broke the park-hold the woman had on us until then. She drifted off and our privacy was restored.

I didn’t want to have to fire up and be rude by saying to her “Please don’t take this the wrong way, but we just came here to enjoy ourselves, not answer question after question about deafness and listen to you ‘educate’ your kids about my daughter like she’s some kind of ‘special’ case”.

And anyway, I don’t believe the onus was on me to point out how far she was pushing the boundaries of decent behaviour and I’ve come too far to let people like her bring out the worst in me. When I cross that line myself, it comes at a cost – giving in to anger is usually more upsetting than whatever I’m reacting to.

Throughout the conversation it seemed as though the woman was trying to prove just how ‘right on’ she was about the difference we introduced to the park when we stepped onto the tanbark that morning. “Look how tolerant I am, with all of my probing questions, I’m not shy about disability!”

Unfortunately, her tactless, dog-with-a-bone approach had the opposite effect, making me feel harassed and uncomfortable. I wasn’t upset as I might have been a few years ago but the unrelenting tentacles of irritation curled around my mind and stayed there all day (I wrote an excoriating post when I came home but it was not fit for print).

I had gone out with small intentions, which included Amelia and I maintaining our status as the unexceptional mother and daughter at the park, but the woman was determined to mark us out as something else; something reduced within the limits of her too-bold attitude to the private lives of strangers.

It’s possible I’m being too harsh, but in life you have to be guided by your own thoughts, feelings and responses. It is not for me to re-cast the interaction as something other than what it was – an unwelcome disturbance to the peace of holiday solitude.

I’m glad to say that this type of negative encounter doesn’t happen too often, if at all. Most people understand how to balance their curiosity against the need for discretion.

The ‘rules’ aren’t obvious to everyone, and I understand how tricky it can be, but it’s not that hard, is it? Just imagine how you would like to be asked about deeply personal, complex things (cautiously) and have your life commented on by someone you have never met (sensitively) and then, simply do the same for everyone you meet. Provided your baseline is a kind-hearted one, I suppose.

And always look for signs of discomfort or unease, and when in doubt, begin by saying, ‘Do you mind if I ask you about…?’ before you go hurling question Frisbees across the park when no-one asked to play.

Recommended further reading:
Facing the crowd: managing other people’s insensitivities to your disabled child by Deborah Fullwood and Peter Cronin (first published in 1986, it is still relevant today)

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.