Sign me a story

‘My Uncle’s Donkey’, as told to me by my daughter in Auslan:

This slideshow requires JavaScript.

Advertisements

What is it that shines in the night sky?

Some moons look a lot like Noel Fielding

Some moons look a lot like Noel Fielding

It’s the moon, isn’t it? Or maybe it’s the stars. It’s not clear from the question, but it could be either.

Most of us instantly understand what is being asked here and can readily name at least one heavenly body we expect to see gleaming in the sky at night.

But what for us might seem like a simple question was, for my daughter Amelia, a challenging hurdle in an obstacle course of tests conducted by her psychologist, MC, over the last two Sundays to assess her for suspected autism.

Some tests, like naming random objects in pictures, assembling puzzle shapes and reasoning out visual sequences presented no problems to her at all – she sailed high over these hurdles as far as her abilities could carry her.

When her focus could be captured and held tightly before it evaporated, the alertness of her mind and her desire to learn and share lit up her face like a beacon. Like that round, shining moon in the night sky.

Other tasks frustrated her or downright eluded her grasp; more complex puzzles, increasingly abstract questions and images, or the replication of assembled blocks ‘just like’ MC had done before her were abandoned in quick time.

For the most part, Amelia’s behaviour imposed its mighty will on the proceedings. Her strategies for defending herself against the ‘tyranny’ of testing were devastatingly effective and impossible to countermand.

From the moment we walked into MC’s large and clutter-free office space, Amelia clicked into her manic mode of being. There was no shaky start leading to a calm middle with a fiery end. It was game on from the get-go.

MC had arranged a table with small chairs where she intended to sit across from my girl and enter into some controlled back and forth for her assessment. We were to sit at a larger, parallel table and stay very much in the background.

Predictably, Amelia had other ideas. There were so many examples of her need to assert complete control over this new environment (and person).

First, she selected one of the ‘adult’ chairs and moved it to the smaller table. Then, she rearranged the rest of the furniture to suit her purposes. It was the feng shui of a defiant child who will sit wherever and in whatever chair she damn well chooses.

As for our location, well, Amelia was having none of this stuff about parents playing a two-hour game of ‘keepings off’. She dragged our chairs close to hers and MC, like us every single day of our lives, just had to go with it.

The psychologist was forced to conduct her tests on the table, under it, on the floor, everywhere except where she had intended. MC quickly worked out that it’s Amelia’s world and we’re just in it.

The rules that govern this kind of assessment are highly strict. Parents are not allowed to verbally intervene or help unless under specific instruction. Questions are defined by a tightly-crafted script, designed to give the least information or hints, hoping to draw out responses that identify understanding without aid.

Sign language and gestures are also not permitted in this context so could not be used to help Amelia comprehend what was being asked of her. Nor were there attempts to use touch to catch or regain her attention, even when it was such a struggle to hold.

While I understand that cognitive testing needs to be conducted consistently (and without undue influence), I have been wondering and worrying about the efficacy of a purely verbal process like this for a bilingual deaf child with a speech delay.

It was very difficult for me to literally sit on my hands and keep my mouth shut when certain questions – things I am sure Amelia knows – were posed to her while her face was averted, in a soft voice, using a lexicon that she would not recognise.

Allow me to interpret an instruction such as ‘Amelia, build the blocks like I have done’ and I could construct meaning with key words and the accompanying sign of ‘same’ along with a strong voice and clear gestures and I am certain she would know what to do.

But there’s a big difference between knowing what to do and being prepared to do it. The very real disadvantage of a speech-only approach explains a part but not all of her refusal to participate in the tasks set for her that first day.

I could see a little switch flick inside her as soon as a question had genuinely taken her outside of her field of knowledge. Once that little circuit breaker had been ignited, Amelia escaped to a small, empty cupboard.

That’s not a metaphor; it was literally, an empty cupboard near the door that seemed to appeal immensely to her. It was safe, dark and she had already begun storing objects from the room inside it. It was the quickest creation of a makeshift comfort zone I have ever seen.

It clearly fit the security bill for her, because she spent about ten minutes of each appointment inside it. At the beginning of the second session, she walked straight into MC’s room and set up the cupboard space in preparation for its imminent use as a recovery bolt-hole.

As a place to regroup, I wish I could have climbed in too. Because it’s a weird feeling to be in an appointment where you so want your child to ‘do well’ but at the same time you want the specialist to see all of the strange and difficult behaviours that have led you to be there in the first place.

Okay, so there were plenty of low lights and we spent a lot of the time sitting awkwardly, unsure what our role was or wishing we could take a more active one, but there were some sweet moments in the mix that made me smile.

The majority of the second appointment was taken up with ‘free play’, where MC placed lots of toys around the room to watch Amelia’s activity, how she played and for how long. Then MC engaged in some one-on-one play with her to see how well she related to someone other than us.

Out of her enormous bag of tricks, MC produced a Finding Nemo bubble blowing machine and cranked it up for Amelia. It released a multitude of tiny bubbles, sending them high into the air before they popped on their way to the floor.

I watched Amelia hold her beautiful face up in welcome supplication to the generous cascade of bubbles as they dropped onto her cheeks, nose and mouth. The pleasure in her features, now open and receptive, was so powerful I just stared and drank it in. I took every last drop of her joy to sustain me for the rest of the session.

In that same appointment, she took three chairs and lined them up in a row in the window corner of the room. She ordered me and her Dad to sit while MC sat behind taking copious notes.

Then Amelia ‘took to the stage’ before us and grinned, a signal of something exciting about to commence, and belted out a heartbreaking rendition of ‘Twinkle, Twinkle, Little Star’.

She was so proud, so delighted with her performance – this child who would not sit or comply or do anything other than what she wanted – and I had to bite down hard on my bottom lip to stop myself from crying.

My husband and I are taking a great leap of faith here, placing the hopes and fears of our family in the hands of a stranger in yet another clinical setting but we have no other options available to us. We simply have to keep our minds open to the possible benefits and the answers MC might provide.

But it’s a hard road. In the end, it doesn’t matter if Amelia sang about stars ‘up above the world so high’ – there are no points for effort or heart on a standard IQ scale.

And she didn’t know the answer to the question about what shines in the night sky. I don’t think she knows what ‘shine’ is and there weren’t enough key words or signs to help her decide which celestial object to name.

But last night, while I was driving Amelia home from visiting her grandparents, she craned her neck to look out of the car window to tell me excitedly and repeatedly all about that big, glittering moon she knows so well.

Yes, she knows about night and the sky and what a moon is, just not in the right order and not always at the right time.

Choose your own experience

David signs his crucial moment in Four Weddings and a Funeral (1994)

David signs his crucial moment in Four Weddings and a Funeral (1994)

It’s not often my daughter Amelia will see her specific life experience as a deaf child reflected sensitively in the media, in books, on television or in movies. She could count the instances to date on one small hand.

Of course there is more to my girl than her deafness and I hope like me she will one day fall in love with wonderful real and imaginary hearing characters like Elizabeth Bennett, T.E. Lawrence, Sam Spade and Angel (the vampire with a soul) regardless of how far their lives diverge from her own.

It’s called having an imagination, and we think Amelia has a vivid one.

But let’s face it, there is a dearth of representation in popular culture of deaf people and their experiences, from the historical to the contemporary or the entirely fictional. If you take Helen Keller and Marlee Matlin out of the mix, it’s slim pickings indeed.

I never realised how ‘cutting-edge’ Four Weddings and a Funeral was to feature a young signing deaf man called David (played by deaf actor David Bower), who is more than incidental to the plot, until I grasped how rarely this happens in mainstream cinema.

Ever on the search for positive examples like this one to show Amelia, I was excited to come across a company called Experience Books which sells texts for deaf children and children with autism.

But they’re not just selling books, ready-made in the hope that they might mirror something about your child’s journey, they are (and the clue’s in the title) offering a rewarding experience that is both interactive and tailored to tell their unique story through words and pictures.

So, a few weeks ago Amelia and I sat down to personalise a book about her deafness and what it means in her life right now. It’s a three-step process: you build the main character (hint: she’s a rambunctious, blonde four-year-old), choose the text and create the book. Too easy.

First we selected the book’s theme, which for us was deafness (rather than autism or say, a book for siblings). Then Amelia was able to choose how she wanted her ‘avatar’ to appear, so that in the finished product she would recognise herself in the blonde hair, pale skin, dark eyes and most importantly, silver hearing aids of the main character ‘Amelia’.

Then, the website provided us with an opportunity to drill down into greater detail about the kind of hearing loss Amelia has and the type of equipment she uses to access the world of sound.

A free-text section prompted us to talk about what she wanted to say about herself – who her family is, who her friends are and the activities she loves. The nature of Amelia’s ‘self’ is somewhat enigmatic so I welcomed the chance to test how far she could talk about small things that make up her identity.

Amelia was so excited by my questions and our enterprise that she kept throwing names at me for inclusion, like all of her cousins and almost all of the kids from her deaf kindergarten class (which, in most cases, I had no idea how to spell). It was intoxicating.

We ran out of text space, but we filled in more than a few gaps about what is important to her, about what ticks the workings of her innermost clock.

Another key section of the book is on communication, and it’s great for parents who want to share some crucial aspects about what makes things difficult for their deaf child (loud noise, people talking at the same time), or how people can help (use sign language, get their attention first before speaking).

And finally, the website asked us to enter more detail about Amelia’s favourite things. So, it’s not simply about her deafness and describing what that’s like for her, it’s also about Amelia the girl who likes painting and dancing and signing with her friends.

After we finished entering all of Amelia’s characteristics and clicked ‘send’, it occurred to me that I didn’t really care what the book ending up looking like.

The experience of sitting with my daughter, jostling for space in front of the laptop as we chatted loudly about the big ticket items in her life (“we can’t fit any more names, Amelia!”), is one of my favourite moments as a parent.

Because I’m still working out the best way to be with her or how to reach her, and the opportunity to sit and talk and learn together in a relaxed way does not present itself that often.

Happily, for the purposes of this story, Amelia’s enjoyment and my bank account, the book is a winner. It’s not long and there is a typo where I managed to misspell Grandpa (Granpa is still phonetically correct, right?) but it does everything I hoped it would and more.

Amelia with the book created just for her

Amelia with the book created just for her

It offers that rare thing, a child character with a hearing loss who also wears hearing aids and does kooky, fun things like most four year olds. She lives hard and she plays hard. And has four million friends.

But it’s not just any child’s story, or an approximation of Amelia’s, it is precisely HERS, with the right language to define her hearing loss, the colour of her aids worn in both ears and some of the things that I want people to understand about her deafness before she can grasp them herself.

I don’t expect this degree of looking-glass reflection every time Amelia opens a book or switches on the television. If you constantly search for yourself in the stories chosen by a media beyond your control you will inevitably be disappointed.

Deafness and the lives of deaf people are a marginal interest in that mainstream world, so you have to grab every representation you can find and shine a big light on it.

Like this book called ‘All About Amelia’ which for other families is just a mouse-click away from telling the story of their deaf child in bold colours and important words to cherish for a lifetime.

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

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.

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]

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.