Careful she might (not) hear you

I’M NOT sure precisely when I started worrying about the social impact of my daughter Amelia’s deafness. Maybe it was the day I read too much online about how isolating, confusing and downright exhausting social experiences can be for deaf kids, always up against it in the hearing world.

Daunting words in bold-face leapt out at me from the computer screen. Sharp-edged ones like, depression. Anxiety. Paranoia. And anger. That one always seemed to be in italics for maximum impact.

It’s not a doom-sayer’s checklist – ‘nasty things coming your way when you’re raising a deaf child’ – but it is a set of emotional risk factors that can’t be taken lightly.

My aim as a parent is to hopefully reduce their power to hurt my daughter on her path between two contrasting worlds, deaf and hearing.

Amelia is not quite six years old and we have only known about her deafness for a tick under four years. It’s not a long time in the grand scheme of things. But already I see just how easy it is for her as a deaf child to be left out or excluded by virtue of her difference to other people.

Let’s take birthday parties as a classic example. Oh birthday parties, how I hate thee with a passion. It’s unavoidable, but kid’s parties are the worst kind of place for a deaf child to feel a part of the natural order of things.

Because they’re too loud, too chaotic, too MAD for Amelia to make sense of what is going on around her. Sure, she wears hearing aids but they are next to useless in the face of such an intense racket. Those little devices can’t sift the wheat sounds from the cacophonous chaff and so she is mostly lost.

I watch her making her way with excited bewilderment around these parties and I feel like throwing a huge, warm blanket over her. Underneath its soft layers, background noise would be reduced to a gentle hum that would not compete with voices speaking clearly in merry conversation.

In either context Amelia is alone. ‘Alone’ in the noisy crowd, or by herself beneath the blanket I throw over her every day when we come home and I can set things up exactly as she needs them to be.

It is because of this potential for loneliness that I love being able to send her to a school for deaf children. When I visit Amelia there and see her with her classroom comrades, it’s sometimes hard to see where she starts and they finish.

The joy of school etched on her face.

The joy of school etched on her face.

These six classmates have been together for almost two years now and they are incredibly close. Whether they speak or sign to each other there is something almost organic about how they interact.

It’s born of the time they’ve spent bonding as friends but it is also the result of their shared identities as bilingual deaf kids. Communication between these children operates on a plane of mutual instinct and understanding; touching or tapping to gain attention, waving to be seen or heard, using gesture to add meaning: all form the basis of a code that marks them out as members of a club, a culture.

Within this rarefied environment, Amelia and the knowledge required to be with her and make her feel like an insider are known to everyone. I never need to worry about a scary thing like social isolation.

Seeing how crucial communication is to Amelia and her sense of belonging, it is all the more important for us, her hearing family, to be diligent about always involving her in social activities and conversations.

When we have friends over to visit, she becomes highly agitated and manic when there is a lot of conversation happening across her, between adults engaged with each other rather than with her.

Amelia yells at us over and over again to explain, “What are you talking about? What are you talking about?!” She throws her body into the mix too, placing herself in our eye line so we don’t ever forget she’s there waiting to be included.

Of course she needs to learn when to wait her turn (good luck) and it is less than socially optimal for us to have to keep stopping and explaining each story to her, but it is her right to be factored into the cut-and-thrust of social chatter.

It is much harder for Amelia to find her way in larger social situations where competing sounds blend into a baffling wall of confusing sounds and she sort of disappears under the radar, unable to get her bearings without a hearing compass to guide her.

This is where our greatest challenge lies, in reminding other people to take a minute to stop and talk to her, lean down close to her face so she can see their lips when they are speaking, use their hands to make the meaning of their words clearer. To see her and invite her in.

In reality, it doesn’t take much to make a child like Amelia feel involved AND accepted. I see this every time we spend time with our closest friends, GH and NB and their boys. It’s so uncomplicated, the way they ask Amelia how to sign certain words, to share her second language with them.

I watch Amelia’s eyes light up with pleasure as she shows them how to sign ‘turtle’ or ‘hippo’ in Auslan. They sign the words back to her and, hey presto, she’s in their world and they are in hers.

We recently went on holiday together and stayed in the same cottage. At night time as we were getting our kids ready for bed, there was always some story-time happening in the lounge room.

Sign of the times: Amelia and Jem take their friendship to the next level.

Sign of the times: Amelia and Jeremy take their friendship to the next level.

Unprompted on the first night, Amelia grabbed a book and sat next to our friends’ youngest boy. She opened the first page and started telling him the story completely in Auslan, with her voice ‘switched off’. I’ve never seen her do that with anyone outside of her family or deaf friends before.

And he loved it, watching her hands describe the flow of river water or the fire expelled by a scary dragon. Amelia repeated this routine each night, and I could tell she felt proud to be like a big sister to her sweet little friend, able to teach him something new. It is lonely to be an only child too.

Sometimes I think it’s children who know best how to cut through all of this stuff and find some valuable common ground.

Like the other day when Amelia was with her Dad in the park and she ran over to ‘talk’ to some older boys, aged maybe nine or ten.

Her speech wasn’t really up to an in-depth gossip session but she had a mighty crack anyway. In these situations she tends to make a lot of noise, such as loud bird-screeching sounds and flaps her arms around, in her often-strange attempt to say ‘hi’ and make friends.

One boy saw Amelia’s hearing aids and asked her Dad if she was deaf, which he confirmed. “Oh, we thought she was disabled or something but then we saw her hearing aids”.

The boys then welcomed Amelia into their group and hung out with her. They had zero anxiety about approaching her in the ‘wrong’ way. They got the hard questions out of the way early and then all there was left to do was play.

And it wasn’t that they were tolerating her presence, the boys actively shared their games and conversations with Amelia. They let her hold their hands and there was mutual enjoyment of the time spent together in a small park in the suburbs.

I know that this was a special event because of the way my husband told it to me. He spoke about that main boy reverentially, because for about fifteen minutes he took our daughter into his world and any present worries about her just melted away.

Her isolation, and my husband’s, were delayed for an afternoon, halted by the friendliness of those boys and their easy acceptance of Amelia.

And so was mine. Social isolation isn’t just a huge risk factor for deaf children, rather it applies to their parents too. Because for every child or adult who ‘gets it’ there are so many others who don’t and that is an alienating fact indeed.

Thankfully at the moment, Amelia isn’t really cognisant of the people who accidentally ignore her, nor does she seem to feel the exclusionary effects of situations in which she is a natural outsider. The big job for us as she grows is to try and minimise the impact of this kind of isolation on her generous little heart.

All we can hope for is that there are enough loving family members, cool boys in the park and sweet little friends who enjoy their story time in Auslan to protect her from the feelings of loneliness when they come. And try though we might to stop them, they will come.

Ogres are like onions

Shrek in existenstial crisis mode.

Don’t mention parfait.

IN ONE of my favourite scenes in Shrek, the titular Ogre and his Donkey friend are walking and talking about the vagaries of life. Well, at least Shrek is trying to.

He explains to Donkey, “For your information, there’s a lot more to Ogres than people think…Ogres are like onions”. Not because, as his little hooved compatriot points out, they stink, or make you cry. It’s because they have LAYERS.

Shrek is trying to say that he is more than the sum of his parts, more than the brute strength suggested by his enormous, green frame. He is a complex being, with, well, layers.

Donkey’s jive-talking wisecrack, “You know not everybody like onions,” is followed by a hilarious riff on the deliciousness of parfait more suited to Mary Berry’s love of perfect cake “lairs” than an existential crisis.

I can totally relate to Shrek’s onion-based reflections. When we found out that our daughter Amelia, who was born deaf, was also on the autistic spectrum with some serious developmental delays to boot, my mind reached out for a suitable analogy and came upon the humble onion.

I can remember saying in my flippant-but-painfully-serious manner to our pediatrician, “How many layers does this onion have?” We laughed but neither one of us was taking the news in our stride.

By drawing my own onion parallel with our life, I don’t mean that I view my beautiful daughter’s struggles as something to be bitter about, though I have cried more tears for her than the most gruelling meal-time chopping session could produce.

I’m trying to find a way to explain how it feels to start out as a family where everything feels certain, solid and whole, for at least a year, and then suddenly important layers start flaking off, one after another, revealing big problems in the rawness underneath.

When I think about the many phases of our life-onion in the nearly six years since Amelia was born, it’s hard to believe the number of challenges we’ve been confronted with.

On one level, it can make you feel dreadfully pessimistic and wary of the next bad thing waiting just around the corner. Once the layers start to crumble, it’s difficult not to see trouble in every cloud, every rainstorm, or every Bureau of Meteorology forecast annoyingly recited to me by my weather-nerd husband.

What could be more important than this?

What could be more important than this?

But the funny thing about going through massive life upheavals, one after another in a short period of time, is that you exhaust a lot of the energy that would normally be expended worrying about pointless things.

By the time you’re standing at the centre of that unstable onion, you have little need to be worrying about the next career move, big promotion, or shiny new car. Your perspective undergoes a radical shift and it will never be the same again. For that, I am extremely thankful.

In a weird twist of fate many years ago now, I was made redundant from what I thought at the time was an important job, the best job I’d ever had. In the blink of an eye it was all gone, the company car, the generous salary, the status symbols of a career I had built over ten years.

I was suddenly jobless, but within three months, we found out that Amelia was deaf and nothing mattered more than being with her and helping her recover lost ground. My life had been stripped back to the bare essentials and I found that I didn’t care about anything more than my daughter’s happiness. No job can compete with that.

I didn’t mourn the sudden loss of my career for too long and I’ve had a few false job starts since then; it hasn’t been possible for me to work for longer than a year or so in the middle of all of the real graft of raising an intense little person with very special needs.

I’m hoping the tide will turn in my favour sometime soon, but I have reserves of patience on that score. Life might not be strictly about me right now, but it will be again one day soon.

Over recent years – and forgive the introduction of a new analogy – life has felt akin to being in quicksand. The harder you try to grab onto the optimism of the proffered branch, the further you sink. And yet you do grow used to the uncertainty of it all. The not-knowing-what’s-around-the-corner nature of being in our family.

No caption required.

No caption required.

Maybe we’ve shed all of the onion layers we’re going to and have collected each flaking, brown piece to create a complete picture of our story. I’m not so sure. In fact, I’ll never be sure of that, not as long as I’m alive. None of us is in possession of an infallible crystal ball.

In any case, it’s a genetic trait in my family to expect bad things to happen to us. We’re almost annoyed when things go well because we have to accept that happy outcomes are possible. Good times are not to be trusted. There’s a sick kind of glee that makes us jump up and down and say “See, I told you!!” when life delivers us a body blow.

I don’t know if that’s a Scotch-Irish thing, a German thing, or just a really weird thing we’ve developed all by ourselves. But let me tell you, I think this sort of entrenched, biological masochism has set me up for the long haul. I’m not deriving pleasure from it, but it comforts me all the same.

Ogres are like onions and so is my life sometimes. Amelia’s catalogue of disabilities too. The general uncertainly of being on the planet and not knowing what the next day will bring. Let the layers fall where they may because I have a thick skin of my own and I’m ready for anything.

The ice girl cometh

Warrior girl with water weapon

RECENTLY I found myself caught up in the wacky Ice Bucket Challenge sweeping Facebook feeds the world over. You might have seen one of these videos, where some poor, charitable soul stands nervously in a suburban backyard, waiting to be drenched with ice-filled water by delighted relatives enjoying their role a little too much.

Yep, that was me a few weeks ago. I was ‘tagged’ by my good friend CM to take up the challenge and once you’re ‘it’ there’s no such thing as ‘keepings off’ or ‘barley’.

So I stumped up and took my freezing cold medicine. For the good of the cause (motor neurone disease) and because I didn’t want to be called a wuss. I know, I’m not about to win a humanitarian of the year award.

But I do know someone who would have taken that ice bucket challenge by the horns and never let go. She would have relished it, and asked for more and more buckets until she’d beaten the Guinness Book of Records benchmark that might apply to a weird new age phenomenon such as this.

Who is it, you ask? Some hard-skinned ranger type who feels no pain and crushes all opponents in their wake? No, I’m talking about my five-year-old daughter Amelia, who is on the autistic spectrum and is wildly PASSIONATE about the sensation of very cold water on her skin.

I first noticed this strange sensory trait when she was about two and a half. One afternoon during the winter time, I saw her outside with a bucket of cold water she’d filled when I wasn’t looking. She proceeded to fill a smaller bowl with the water and pour it repeatedly over her head and quivering body. It was quivering with the cold no doubt, but also with powerful exhilaration.

For a moment I watched at the window, transfixed by the scene. Amelia’s beautiful round face was a study in elation, in euphoria. She appeared totally unbothered by the frigid temperature of the water. Instead, it was a delight to her and she welcomed it without fear or hesitation.

I was torn between wanting to leave her be for a while longer to enjoy being at one with the water, and the mothering instincts which compelled me to gate-crash this spontaneous garden party and throw a big towel over it. And her.

Other times I found her in our backyard with no clothes on, holding a gushing hose in the air so the icy plumes of water would fall straight down onto her head. Amelia treated the water with reverence, as something deeply special to her that only she could understand.

It’s true that my girl had never enjoyed warm water, especially in the shower. My attempts to add just a little more heat to the stream from above were always instantly detected. I couldn’t get past my child’s incredible sensitivity to the temperature and how it felt on her skin.

For quite a long time this need in her worried me a lot. Every time she’d ask for cold shower water as she sat in a shallow (warm) bath below, we’d wrestle with the taps and I’d think ‘I can’t let her sit in freezing cold water, can I?’ Old sayings about catching one’s death hovered close to my ear and increased my anxiety.

But Amelia doesn’t feel cold water the same way most people do. You only need to see her at the beach out of season when the water is still too chilly for mere mortals to enter; there she is – my little Tommy Hafey child – striding out determinedly, into the deep folds of all that delicious cold.

I think for Amelia, the love of cold water is a combination of the intense feelings she gets from the pressure of the spray and the glacial temperature itself. These elements create a sort of rapturous response in the nerve centre of her body – I can see it in the excited flapping of her arms, the full-body shuddering that makes her squeal likes she’s on the joyride of her life.

After years of watching her relationship with cold water unfold, I now understand that it isn’t bad for her the way it might be for a different child who could not tolerate the icy temperature at all. Or an adult forced to endure a freezing bucket of water tipped over their heads for the sake of charity.

Embracing the challenge of cold, cold water

Embracing the challenge of cold, cold water

Now most nights, after Amelia has agreed to conduct her clean-up in a ‘nice’ warm bath, I give her five minutes (give or take) under the arctic torrent from the shower overhead. I peak behind the curtain to steal a glimpse or two of her big, round face, held up in exaltation to the pure thrill of it.

Bath times have been harrowing for us for many years. The allowance for icy, cold water when my daughter desires it has made things a lot better. Sometimes it even calms her down, as though the (welcome) shock to her body from the shower helps quieten those other feelings that can send her out of control.

And in relaxing the house ‘rules’ around water I can also see a little glint of thanks in Amelia’s dark eyes. ‘Mum is finally working me out’, it says. She is giving me freedom to be myself. To take a million ice bucket challenges if I want to.

But it’s not a challenge for her at all, it’s simply a way of being, a way of life. Trust a child to be so deliberately fearless.

The dad who went up a hill and carried his daughter down a mountain

Finally, a father (2009)

Finally, a father (2009)

I AM only just beginning to understand the pain my husband has carried with him on our path to parenthood. It’s a subterranean heartache but I can feel it beating beneath the surface of our lives, growing louder when times are hardest.

In his eyes I can see the cost of past experiences that have made him yearn for deeper bonds with people. Friendships are deeply important to him, as is that reciprocal give-and-take of a connection truly shared.

When it came time to start a family of our own, I know he (like myself) hoped to fulfil the dream of having a baby – son, daughter, it didn’t matter – who would hold him close in the deepest relationship yet possible. The one with his child.

As a family, we would achieve a grand closeness never before seen in the universe. In short, we would grasp hands and never let each other go.

But try as you might, it is futile to pretend that any of us can control life in this way. Nor is it right to expect that a child should act as some sort of gap-filler for relationships that spun away from us in our childhood.

Together, we have learned this lesson the hard way. Our daughter Amelia, who is now five, did not receive our exhaustive memos in utero about close companionship or ready compliance.

The lists we made detailing the places we would go, the activities we would share, the things we would teach her: all were lost in translation from imagination to stark reality.

Amelia arrived without knowing the great weight of expectation we had heaped on her shoulders. In turn, it took us time to learn that she is deaf and has autism too.

That second, more recently identified fact, struck my husband in the chest like an arrow shot. The wound has not yet healed.

For him, I think it must sometimes feel as though he has been thrust back into the more troubling spaces of his past. Of his longing for companionship and finding only barriers where open arms should have been.

But this is much, much worse, because here we are talking about his beautiful, cherished daughter. The person he most longed to meet and who, when he found out we were expecting, nearly collapsed from paroxysms of joy.

During the worst phases of Amelia’s rages, he has woken daily to chaos only to return at day’s end to find similar chaos readying itself to greet him once more. I am lucky, because I have been around to witness and enjoy the moments of calm that happen in between.

He has spent endless hours trying to get his daughter to listen to him, to calm down or just sit with him and play. If only for a few moments.

Often the greatest challenge is asking Amelia to leave him alone. She craves closeness too, but filtered through her autism it’s all rough physicality and she can’t moderate the need in an appropriate way.

So, she presses herself on him, lies on him, punches him and pulls at his face until he often has to abandon her and lock himself away.

But over five years of incredible ups and downs it is possible (read = mandatory) to adjust one’s expectations of family life. We have had to put on hold some of the things we hoped to do together. Little things that the majority of people take for granted every day.

We make do with living as a family unit that sometimes needs to split up and create more manageable compartments to survive. It’s crucial to recognise which combinations work best for Amelia depending on the situation.

A rare football victory in the early days.

A rare football victory in the early days.

Like going to the football. For as long as I can remember, my husband has dreamed of taking his little girl to see our beloved Bombers play. He would dress her in red and black and talk to her about the rules and the players. We can’t control much but Amelia has no say in which team she is required to barrack for. No matter what their recent transgressions, we’re an Essendon family through and through.

Sadly for my husband, taking her to games is too high-risk an activity right now. After about the age of two, Amelia has found it impossible to sit down for longer than a few minutes and the combination of crowds and noise makes it too stressful for her.

Very swiftly, Amelia starts to lose control and, as is the ritual, her Dad is forced to carry her screaming form out and away from the din, from those screaming just as angrily at the umpires. It’s not fair on either of them to pretend the result can be otherwise. At least in the short term.

So we achieve a domestic harmony of sorts by being ultra-sensitive to Amelia’s needs and abilities. And by looking out for each other as parents, and as individuals. So when her Dad goes to the football it is not with his family but with other Dads and their children.

Like a genial uncle, he sits with them and talks to them about the game he loves and wonders at how still they are. How easy it is to be with them. And he wishes he didn’t have to leave his daughter behind.

But just because he sometimes has to be apart from her, as I do, that doesn’t mean he hasn’t looked for other ways to connect with her. To make himself feel like her father, and she his daughter.

So what do they do? They walk. Most Sundays, Amelia and her Dad drive to sundry parks all over Melbourne and beyond and just walk. It’s more like ranging really, up hill and down dale, whether it’s raining or not.

Discovering happiness on the hills of Melbourne.

Discovering happiness on the hills of Melbourne.

Amelia is a terrible walking companion. She has no sense of safety, she strays, and runs away and follows other people and animals like a hybrid canine-child catching the scent of something colourful, fun or more interesting over there. Always over there.

Last week she spotted a group of horse riders and careened headlong into a valley after them, with no fear of equine retaliation. The riders shouted at her to stop and thankfully she heeded their harsh tones. My husband recalled it to me later, the sense of helplessness as she broke away from him and sprinted towards potential danger.

Clearly rambling with Amelia is absolutely exhausting. But, for all that it is taxing, her Dad loves it too. Walking in the outdoors was a treasured part of his upbringing and now it is his gift to her.

Because regardless of the weather or the clouds that pass over her face from time to time they are together. They’re not at the football, or visiting friends, but on the hills of Melbourne they have found each other through walking.

And when they come home to me, their faces flushed from the elements and the joy of adventure I see only closeness. I see the beauty and the depth of their relationship as father and daughter.

For T, with love.

Amelia and the magic torch

For my fellow children of the 1970s.

For my fellow children of the 1970s.

It is a truth universally acknowledged that too many writers use the famous opening line from Austen’s Pride and Prejudice to kick off their articles.

Yes, it’s a brilliantly ironic line (in the true non-Alanis Morissette sense) from a master writer, but I reckon it’s time to branch out and steal from other authors. Dickens does a nice line in, well, opening lines.

It is also a fact that the more my five-year-old daughter Amelia learns to communicate – in both speech and sign language – the more I am beginning to truly know her and understand the cogs that drive her quirky child-machine.

For the last few years it’s as though my husband and I have been engaged in an endless game of charades with our girl, or at least some kind of mind-bending puzzle, to try and work out what she wants, what she fears, who she is.

We had the picture on the box to guide us, but some key pieces had clearly escaped down the side of the couch.

In the past, if Amelia was unsettled or distressed at night for instance, we never really knew why. Was she sick? Did she have a headache or a sore stomach? Did she fear the dark that enveloped her room after lights out? We didn’t know and she couldn’t tell us. Her language skills just weren’t there yet.

So, we’ve been miming and prognosticating like crazy, making suggestions to her, offering theories to each other until I’m sure she just wanted to make like Greta Garbo and tell her mad parents she wanted to be alone.

Until recently, we had to rely on more explicit signs of Amelia’s preferences in life or trial and error solutions to problems raised by sudden outbursts of screaming or fear.

But I think there’s something magical about age five and the first year of school. Amelia has flourished and progressed in ways we never dreamed she would. Especially where her speech and language skills are concerned.

Every day since term one, I have been in a constant state of delighted awe watching my little girl rush from her bus to tell me about the exciting things she has done with her class.

Amelia will dive into her bag to show me the new book she is slowly beginning to read. Or the letters she learned to write that day. Two months ago, she could only write in reverse from the right of the page to the left. Now her writing compass has switched due-East and she is copying whole, legible words with increasing confidence.

But it’s the improvements in her speech and language, and with them the expression of her innermost thoughts, that we cherish the most. The other day, my husband heard Amelia talking to herself in her room about writing letters of the alphabet. “Mmm…I can do S, I can’t do a K, I can’t do E…”, and so on went her private recitation.

In this small example what I hear is Amelia’s deep interest in learning, her personal reflection on what she is able to do and what she is hoping to work out for herself in time. I can better understand her and I never want it to stop.

Last week, she woke up in the middle of the night which is generally out of character for her. When this happens we might hear crying or yelling to tip us off that something is amiss. This time though, her voice flew out into the hallway with a single, urgent message: “I’m scared! I’m scared!”

There it was. An answer to a shift in behaviour before a question had been signed or spoken. When I went in to see her she repeated her fears by furiously signing ‘scared’ on her chest over and over again. Amelia could not have been clearer about her feelings.

We were able to calm her down but it was obvious that we needed to learn more about what was frightening her so. The next morning I met her at school for her Monday speech therapy session with the lovely CN.

Partway through the session, the subject of Amelia’s early waking came up. Without any probing she said, “I’m scared of my room”. I tucked that little clue under my arm and later in the evening I had a chance to probe her about what she feared so much about her room.

I asked, “Amelia, what are you scared of in your room at night?”

She didn’t miss a beat, “I’m frightened of the black dark”. She emphasised black dark with a punctuating rise in volume to make sure we knew just how spooky it was.

I continued, “The black dark? You don’t like the dark when the lights go out?”

“No, I don’t like it. I’m scared.”

Now we knew for sure what was wrong, I said, “Amelia, would you like me to put your red torch on and leave it on your shelf after you go to sleep? It’s a special, magic light and it’ll keep the black dark away”.

I was reaching back into my memory to a cartoon called Jamie and the Magic Torch. My brothers and I would re-enact the magical properties of Jamie’s torch in my room with a mirror that reflected a circular shape on the wall. I was afraid of the black dark too.

I turned on Amelia’s torch to show her how the kaleidoscopic colours would glow warmly in that black dark. She really liked that idea, shouting triumphantly, “go away black dark, go away!” Her hands slashed mightily through the air as she shooed her imaginary terror out of sight.

After Amelia was safely tucked up in her bed and snoring softly, I switched on her magic torch, ready to stand guard over the scary darkness. The night passed without event. There was no screaming from her room, no movement, no sounds of fear or anxiety. The torch won.

In the morning, my daughter who now has whole conversations with me, said, “I like the little dark, not the big dark”. Amelia was saying to me that the torch had taken the edge off the dark for her and made it better. She was not feeling so scared anymore.

Some people find Amelia’s voice hard to understand and she is shy to share her speech with people outside of school and home. I know people who are surprised when I tell them that she can speak at all.

I also notice that she doesn’t sign as much when she is around people she doesn’t know very well. Perhaps that is a language she associates more with her deaf school friends, teachers and close family members who share it with her.

But now she’s talking and signing like a demon at home, she never, ever stops. Unless she is without her hearing aids when she’ll tell me earnestly, “Mum, I can’t talk…we need sound”. I have a new understanding that Amelia doesn’t like to talk a lot without her aids in.

As per our routine, I put them in yesterday morning and she beamed at me and said, “Now I can talk! You talk Mummy, GO”. It was an instruction, not a request. I said, “Hi baby girl!”

Her answer was short but ever-so-sweet. “You can talk, Mummy. You can”.

Five (un)easy pieces

David Brent, Manager/Comedian/Philosopher

David Brent, Manager/Comedian/Philosopher

I recently found myself in a situation that reminded me of one of my favourite David Brent moments (and there are many) from The Office.

Brent (played by Ricky Gervais with depths of pathos unseen since the days of W.C. Fields) is told by his boss, Jennifer Taylor-Clarke, that Wernham Hogg is under a financial cloud.

Changes to the Slough branch will need to be made in the lead up to an internal merger.

It’s serious business, but Brent has his mind on other things – like hiring a new forklift driver and setting Dawn the receptionist up in front of a new co-worker to think she has been fired.

All in a day’s work on the best cringe-comedy series ever made.

By episode two, Jennifer is back to find out what changes or cuts Brent has made.

“Can you give me, let’s say, five practical changes that you’ve actually made?”, she quite reasonably asks.

The question elicits that now-familiar flicker of panic across Brent’s face when under actual work pressure.

Then the strategy of the uber-procrastinator: pause, repeat the question back to the person and try to change the rules.

“Five changes? Let me give you three, and then another two if you need ‘em….. Efficiency, turnover, profitability…”

Brent’s pathetic attempt to offer up ‘three things’ when only five would do always makes me and my husband laugh so hard. We quote it endlessly and, I’m sure, annoyingly to anyone not familiar with the series.

But some days I feel Brent’s obvious pain at being cornered by a question requiring a deeper response or by an answer that just doesn’t come as easily as I would like.

One such occasion struck me a few weeks ago when I was sitting around a table with the other participants in a program called ‘Signposts for building better behaviour’, designed for parents of children with a disability.

My daughter Amelia attends a primary school for the deaf which has organised for a small number of families to access this impressive six-week program.

We are learning more about why our children – all of whom have multiple special needs – behave the way they do, develop better strategies for managing their behaviour and perhaps, fingers and toes tightly crossed until the circulation cuts off, prevent such challenging behaviours down the track.

There’s no black magic here. No sacrificial lambs taken out the back and slaughtered at midnight to appease the mighty parenting gods. Nope, it’s good old fashioned practical advice backed by sound research.

But that doesn’t mean it’s short on, dare I say it, Oprah-style light-bulb moments.

Take this exercise as an example. We were sitting around talking about how to describe our child’s behaviour. Not just generic terms like ‘naughty’ but using greater detail such as, “Amelia sat on her Dad’s lap and repeatedly hit him over the head and scratched his face.” You get the Tokyo drift.

We could have riffed all day about the bad stuff, the negative tales, the images of difficulty, the specific definitions of what is hard.

Then, and here comes the Jennifer Taylor-Clarke spinner, write down five things your child has done recently that you LIKE.

Cue crickets.

I was asked to name five things, five easy pieces that Amelia has delighted me with, and for more than a minute I was completely flummoxed.

I have never felt more like quoting David Brent in my life.

We were all in the same, rocky boat, me and the other parents. I looked across the table at one Mum whose wonderful son has similar challenges to Amelia and we shared a rueful smile. That we like, huh? This was going to be tough.

But in truth, once you switch your mind on to the positives, once you sift out the detritus that sits on the surface all day polluting your thoughts with grim despair, you find that you can’t stop accentuating the things you like.

My blue pen scratched across my workbook until the words were flying onto the page. What do I like? It turns out I like plenty:

  1. Amelia slept until 7am this morning;
  2. Amelia gave us a big hug and said ‘I love you’;
  3. Amelia taught me how to sign ‘Cinderella’;
  4. Amelia did not scream when I said no to more breakfast;
  5. Amelia played by herself in her trampoline for 20 minutes.
Growing stronger and more confident everyday

Growing stronger and more confident everyday

I love the way the program asked us to do this exercise. It had multiple purposes but its real gift to me was the time and space to sit and think about the many things Amelia has done recently that I like. That make me do little fist-pumps of celebration when no-one is looking.

When I look at my list I see how much progress she has made. Living inside the all-encompassing bubble that surrounds families raising a child with special needs, it can be difficult to notice progress and development.

You only feel weight and pressure and, frankly, under-equipped to raise such a complex person who needs so much love and support.

It is unfortunately too easy to forget to celebrate the good things, the small efforts that are a sign of better times to come.

When I went home, my positive reflections travelled with me and they stuck around.

‘Signposts’ is not offering some kind of silver bullet solution to the ever-vexed experience of parenting any child, least of all someone like Amelia, an alpha girl who is both deaf and on the autism spectrum.

Yet it’s no less revolutionary in my mind. Now, when I sit down at the end of another long day and I think back on how it all went with Amelia, I’m just as likely to start making a mental note of the things she did that I liked, instead of a black list of ‘bad things’.

But more than that, in the moment I am now able to recognise those pleasing things and tell her right then how helpful she is, how clever, how kind or how funny.

I see the impact of my words on Amelia’s shining face; I haven’t starved her of positive feedback but her obvious hunger for more has made me rethink what my child needs on a daily basis.

So when Amelia asks me what she is good at or why she won a prize at school for being responsible (last week’s massive score), I will never again be lost for words. I’ll just take a variation on the Brent route and say, baby, I’ll give you three things and then a million more if you want ‘em.

Deaf like me

Amelia, signing me a tale of whimsy

Amelia, signing me a tale of whimsy

One of the most exhilarating and scary things about being a parent is watching your child grow and begin to understand more and more about who they are and how they fit (or don’t) into the world around them.

In the beginning, the concept of ‘who they are’ is largely defined by parental opinion and self-indulgent projections such as ‘oh, she has my eyes’, or ‘she’s strong-willed like her Mum’. She is in the world but she’s not her own person yet.

But at some stage, that child will break the shackles of the prescriptive parental narrator and strike out on their own path, discovering ‘who they really are’ on their own terms.

For us, that process is made even more complex by the fact that aside from personality traits, quirks and individual preferences, our five year old Amelia’s life has had some surprise storylines that she is only starting to uncover for herself.

She is deaf. She is also on the autism spectrum. These are weighty facts about our daughter that have taken us years to deal with and understand. We’re far from reconciled to their impact on her life and ours.

For Amelia, the journey to self-discovery is very much at its genesis. About her deafness, she knows that without her hearing aids she can’t hear music, television or clear voices.

In this, she has made an important connection between her hearing loss and the technology she uses to access sound and the world around her.

Then a few months ago, she referred to a teacher at her school as ‘deaf’ in speech and sign but when I gently pressed her on what the word meant, she was unable to explain.

No doubt at Amelia’s school for the deaf she sees, hears and signs the word deaf quite a lot, but it has understandably remained an abstract concept for her. She uses it as a label for people the way she might say “that man is old”, or “my friend is cheeky”.

I hold my breath a bit during these interactions with her because each time I’m waiting to see if the penny has truly dropped. You know, the day she finally asks me about her deafness, not just some vague, remote concept.

I’m also hyper-conscious about not forcing the realisation onto her, before she is ready. It’s one thing to learn that your daughter is deaf and to try and assimilate that word and its meaning into your own sense of their identity.

But this part of her story is not mine to tell or explain. It’s not my right to telegraph such an important fact about who she is. For once, I have to just shut up, listen and wait until Amelia works it out for herself.

Like yesterday, when she came home from school and spotted a picture of a toddler with hearing aids in a newsletter sitting on the kitchen bench. The conversation went like this:

“Mum, the baby has hearing aids like me…”

“Yes, he does have hearing aids”, I said.

“Mmmm”, Amelia pondered for a second and then said and signed, “I’m deaf”.

As usual, I held my breath for a few seconds and then said in a neutral tone, “Are you deaf? Show me the sign again Amelia?”

She signed ‘deaf’ once more. I softly asked, “And what is deaf, Amelia?” She didn’t say.

Then I asked, “Who else is deaf, Amelia?” to test her understanding and she began to list the names of her classmates, all of whom are deaf.

And then quick as a flash she broke the spell that seemed to hang over our chat for a minute and ran off in pursuit of another game and the brief moment of self-realisation came to an end. I exhaled a long, slow breath and smiled.

I’m not sure how much closer she is to understanding what it means to be deaf but it felt like a big deal to me, the first time my girl said that she was deaf. It is no longer an abstract concept that lives outside of her experience or a random label applied to somebody else.

Amelia has begun to comprehend more about who she is, only part of which is being a deaf child. I am sure that once the penny really drops there will be stages when she has different feelings about what deafness (and ASD) mean to her identity. To her sense of self.

But whether it’s a heads or tails proposition, my only job is to hold her hand as I always have and listen and answer her questions with absolute honesty. Like when she asks me if I’m deaf and I have to say no even though I secretly wish I could lie and pretend we are the same.