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.

Look who’s (not) talking too

I like to talk. A lot. The vast amount of energy I have in my body often transforms into rapid-fire emissions of endless verbalising, extemporising, riffing, and the expression of random and over-analysed thoughts that ping around my busy head. See, I’m doing it already!

Ask anyone who knows me well, and they’ll probably say I remind them of a cross between that manic savant Jordan from Real Genius (classic 80s comedy) and the Sally Weaver character from Seinfeld. The latter does have red hair and a propensity for high-energy conversation so it’s a solid link.

No-one complains when I lose my voice from illness (happens maybe once a year). Indeed non-medical types around me plump for “better not strain your voice, Mel, try being more silent”. Only yesterday, my friendly local coffee provider recommended I try a decaffeinated beverage to help “dial things down”.

Thanks for the suggestion, but I’m either operating at 0 or 11 and there’s no dimming of the interior lights when they’re burning their brightest.

Unless, of course, you are my controlling, hyper-vigilant five-year-old, Amelia, and you have decided to be the Sheriff of Talk Town. In that case, I have little to no agency and when her little hand reaches for the ‘off’ switch, the time for talking is over.

A curious and sometimes frustrating facet of Amelia’s Autism Spectrum Disorder (ASD) is her anxiety about people speaking, particularly sudden or raised voices or laughter. Anything that signals to her that calm has been disturbed, even if the sounds are essentially happy, at least to our ears.

Amelia is often unable to interpret such sounds as positive ones, and so she becomes highly agitated and on the lookout for ways to lock things down to a neutral (and quiet) zone.

I suspect that her hearing loss plays a role here too, where the increased volume of overlapping speech sounds might come across as distorted and unpleasant, received as they are through hearing aids which can never fully replicate the sophisticated noise filtering of an ear without nerve damage.

I’m also aware how frustrating it must be for Amelia to have to work so hard to listen, hear, and speak so that when other people commence an interaction that is, to her, exclusionary, the sounds might be intolerable.

Whatever the cause, some days are filled with nervous tension as soon as Amelia’s Dad and I try to have a quick conversation, share a laugh or shout to each other from one room to the next; all ordinary sounds of life in a communal household, but to Amelia, they’re like alarm bells heralding something disquieting that needs to be warded off.

She used to shout at us to stop talking or put her body between us to cut things off mid-stream. For a long time we would just wait until she went to bed at night to try and resume a story begun many hours before.

We’re often awake in the wee small hours of the morning, whispering our way through a towering stockpile of unfinished chats and exchanges.

On other days when Amelia’s anxieties are really out of control, she will run from room to room shrieking, “Are you ok, are you ok, are you ok?!” at me if she has heard me sing or make any kind of sound that is presumably coming at her like fingernails on a blackboard (and my singing’s not THAT bad).

She’ll yell at us to “stop screaming” even when our voices are low and moderated as we know they need to be so as not to agitate her. But sometimes it’s hard to do that when you’re having a spontaneous response to something you see on the television or read in the paper.

Or, say, you just like to banter with your life partner.

Amelia’s newest strategy has been the most effective and on some level, at least a little amusing, because in our crazy household you gotta laugh. You just have to.

If I come home from somewhere, filled to the brim with anecdotes to be told, funny stories to impart, Amelia is at the ready with her gun hand, poised to take me out of the conversational equation with devastating speed and accuracy.

She will simply climb onto or next to me and place her hand firmly over my mouth. Not in a creepy way like John Huston’s giant hand silencing his ‘granddaughter’ in the final scene of Chinatown, but it’s not exactly a warm or friendly gesture.

Amelia knows that I will keep trying to talk for as long as I can, underwater, in the shower, wherever I can to feel alive in the world. And she’s absolutely jack of it.

Her preference is for me to remain mute until the conversational winds have passed and no-one has the stamina to keep talking anymore. Or that I should only talk to her and answer her relentless questions about where individual characters on the television screen have gone when they’re off screen and when they’re coming back.

So Amelia employs her patented five-fingered hand clamp on my resistant mouth. She leans in close to my face, lifts a finger to her lips and whispers with some menace, “Shhhh. No. More. Talking”.

Yes, my doe-eyed daughter morphs into a ruthless standover merchant and the steel in her eyes and her voice tells me she ‘aint messin’ around. I’m only just realising how much ownership Amelia claims over me and my face – she has her hands on my cheeks or my mouth all of the time, pulling me closer to her so she can read my lips or hear me more clearly.

She evens signs words in Auslan on my body as well as hers to make sure she’s getting her chosen point across. There’s not a lot of scope for free speech or movement in a relationship as full-on as that.

It’s not as extreme as this all of the time and Amelia’s anxieties peak and trough depending on how calm she’s feeling generally, or how under control her senses are on any given day.

I suspect that her irrational response to our talking has a lot to do with just that – control – the need to dominate us and bend us to her will when so much in her life is far beyond her control.

While we are amused by this ‘game’ of ‘no talking’, after a while you realise that your child isn’t learning at all how to live in a household where sometimes there are people talking around instead of to her and that the sky isn’t falling as a result.

If we simply cave in, Amelia will just steam roll over the top of us until no-one is talking, or sleeping, or walking or having showers alone or just getting on with their day without managing the intense needs of the strongest personality to walk the planet since Mohammed Ali.

She has to learn how to compromise and how to WAIT. They’re important life and social skills and we’re doing Amelia no favours by not pushing back and trying to teach her some behavioural limits.

So when she starts in with the shouting and the mouth-clamping, we have to set a visual timer and tell her that Mummy and Daddy are ok, we’re not screaming and that talking is ok. We are going to talk for five minutes and she has to keep playing with her book or game, whatever, until the timer and we are done.

It’s a battle that’s in its early stages and often five minutes of ‘talking’ will be peppered with lots of yelling and physical interventions from Amelia, desperate to rest the floor back from us. But you have to persist, if you want to preserve your marriage, your individuality and the relative sanity of your home.

We’re nowhere near solving this latest parenting challenge to pop up in our family soup. The minute you think you’ve covered off one problem, another one pops up ready to confound and frustrate.

For now we’ll keep setting timers and having interrupted conversations and hope for the restoration of ‘calm’ someday soon.

Because noise – jokes, stories, laughter, tales – are the spice of a happy family life, and the best lesson I can teach Amelia is how to recognise the positive notes when she hears them and one day she’ll realise that’s it’s safe to join in.

What’s love got to do with it?

Where it all started.

Where it all started.

Since becoming a parent over five years ago, I have received lots of asked-for and unsolicited advice on just about any child-rearing topic you can imagine.

Every parent experiences this at one point or another. When you have a child with special needs – my daughter Amelia is deaf and has Autism Spectrum Disorder (ASD) – there are unlimited opportunities for people to weigh in and give it their best shot.

Many observations are like little gems; I hold them between my hands, turning them over to feel their warmth and absorb the good vibes within. These ones are keepers for sure.

Others, however well-intentioned, delivered by experts or drawn from experience, miss their mark, creating only harsh notes as they glance my shoulder and crash to the ground.

However surplus to requirements these opinions are, I still find myself carefully turning a few of them over in my often stressed-out brain.

This isn’t always a negative or masochistic process. It can be incredibly empowering to drag up some old advice handed to you about your life and see with increasing clarity just how misplaced it was and remains still.

One special example of this springs to mind, and it seems to grow in meaning to me the more I think about it.

The gap between my experience and this particular (I guess well-meant) remark has stretched so far apart you could fit the Pacific Ocean between the places we’re coming from.

It happened during a conversation I had with someone soon after Amelia’s ASD diagnosis was formally confirmed. We had spent many weekends going back and forth to a clinical psychologist and the results, which surprised no-one, were in.

Mostly what I hoped for from people was a simple acknowledgement of the news, and perhaps in that a sort of agreement would be forged among those closely connected to Amelia that we shared the same aims. To help her. To make things better.

That’s my personal definition of support. We confront a problem, give it a name and then we portion it out, dissect it and work out the best way to move forward.

I love her to death, but it's not enough.

I love her to death, but it’s not enough.

But not everyone approaches life this way. I’d begun saying to this person that I was feeling sad for Amelia about her diagnosis but that I thought we could now help her through treatment, but they stopped me and said, “oh you don’t need all of these LABELS, you just need to LOVE HER. That’s all she needs”.

Just love her. That’s all. As though love could ever be enough.

I was a bit shocked at the flippancy of it, at how far the words missed the point, but in that moment I didn’t really know what to say. I was trying to stifle tears and I knew that my thoughts wouldn’t come out clearly or kindly. So I gulped and pushed my response down until I was in a position to consider the comment properly.

There’s something so misguided about saying to a person who has recently received (more) tough news about her child in a family already dealing with so much that she only needs to love her and essentially everything will be fine.

Because everything is not fine. It wasn’t fine at the time and it’s not fine today. And just saying it’s fine doesn’t make things better. It just makes me angry, like molten lava could spew out of my eye sockets at the mere mention of the words ‘just love’.

If love was enough then I would not have discovered fertility issues in my late twenties and that we needed to undergo IVF in order to conceive a child.

If love was enough, I wouldn’t have had to be injected with hormones every morning by my husband for months and months until I was bruised inside and out.

If love was enough, I wouldn’t have had to endure the desperate weeks of waiting to discover if the two fertilised eggs placed inside me would make it. One did. That wasn’t a miracle of love – it was a victory of science.

If love was enough, I would have been able to have more children instead of finding out that my ovaries had withered on the vine by my 36th birthday. Early menopause is not a gift of love nor is the wall you have to build between yourself and the endless questions about why you haven’t had more children.

If love was enough, I would have known instinctively that my cherished only daughter was in fact deaf when I first held her, instead of two long, costly years later. That’s not something that can be undone, no matter how hard we might wish for it.

If love was enough, Amelia would not have also been born with what the doctors call a ‘complex array of developmental issues’, including ASD. We don’t yet know all of the problems we are dealing with so we just attack them one at a time.

I don’t list this roll-call of personal setbacks to suggest I’ve had it harder than anyone else, or that I sit around every day feeling sorry for myself. Compared to Amelia, who am I to complain?

What I’m saying is that it has been my experience at the sharper end of life that love really isn’t enough. Interventions, by science and technology, by expert outsiders like audiologists, specialists, psychologists and so on have been unavoidable and necessary realities in the short story of my family.

Love is a fine anchor, a base from which to spring, a strong foundation, an incredible motivator, but on its own I’m afraid it’s pointless.

Over the last few years I have learned the hard way that work is the thing that, well, works. IVF works when your body can’t do the job on its own. Hormone replacement therapy works when you can’t sleep because you’re sweating six times a night like Albert Brooks in that scene from Broadcast News.

Rigorous and frequent exercise works when your mind can’t take the strain of the things happening to you. Regular tests, therapies and lots of practice work to help Amelia to speak, to be calm, to be well.

Without a doubt, I love Amelia more than I ever thought it possible to love another person. And this never stops, even on the most demanding days when she seems to hate me and the world for dragging her into it without asking.

Love (and Amelia’s early-bird body clock) gets us up in the morning for appointment after appointment with speech pathologists, our occupational therapist, a clinical psychologist, paediatrician, GP, even genetics specialists, but it’s sheer stamina that keeps us going, ever on to the next thing.

If you know all of these things about me, my life, my child and you can still look me in the eye and say, ‘don’t worry about all of that stuff, just hug it out when things get tough’ then you have failed to really see us and understand what we need.

To me, love is acknowledging our pain and our struggles as well as celebrating the amazing progress and milestones that follow. Anything less is a massive negation of that struggle, of the reality of our daily lives in the trenches.

I need more than whatever love is supposed to do for me. Along with hugs (which are great) I also need time, space, exercise, information, silence, solidarity, respite, contact, friendship, conversation, laughter, truth and action, to name a few key things.

If I ‘just’ love Amelia, then what else does she miss? It feels like a code for denial to me and I’m not playing that game. No way.

I wake up every day with a limitless base of love for her, but it’s the hard work and resolve that’s gonna get us over the line. We’ll keep our fairy tales for the night-time, when our toil is done and Amelia is happy, safe and well in the strongest arms designed to hold her. Mine.

Out with the mould, in with the new

Do you have anything in beige?

Do you have anything in beige?

When my daughter Amelia was nearly two and a half, we had her first appointment to be fitted for hearing aids. It’s a big milestone day that one, making the cutting of teeth and other family firsts seem trivial by comparison.

This event was the start of something scary and new, from which there was no turning back. In the two months prior to her deafness being diagnosed, we’d floated anxiously in the no-man’s-land between knowledge and action.

We knew Amelia was deaf but nothing else changed in the weeks that followed. The news just didn’t feel real until the post-diagnosis machinery cranked into gear and Amelia received her hearing aids.

I remember the trepidation I felt, the anxiety that hovered behind me during all of those initial ‘big’ appointments like a dark shadow.

How would we get Amelia to sit still for the mould impressions to be taken? Would we remember all of the instructions given to us?

Thankfully, everything went smoothly and our girl sat statue-like while a strange green substance was squirted into her ear, forming the individual shape of the moulds that would hold her new aids in place.

The audiologist started talking to us about the aids themselves, how they worked, how to put them in and so on. They were a lot smaller than I thought they would be which I remember brought a feeling of relief.

At the time it seemed important that the physical load Amelia would bear on her tiny ears be as light as possible.

Then the audiologist talked us through the choice of colours for the aids and the moulds. There were aids in purple and electric blue and pink moulds that looked like hard candy. They looked sensational but we were not quite ready to be such exhibitionists on our child’s behalf.

On that day, our instinct was to be as conservative as possible, with the standard clear moulds and a discrete silvery colour for the aids chosen for maximum concealment. They would be tasteful, even ‘classy’, but they would never win any prizes for fun (and neither would we).

Back then we cared a little about just how noticeable Amelia’s aids would be to other people. Her ‘disability’ had no other visual signifier beyond the technology she would have to wear every day for the rest of her life.

So, we chose to be boring, to be safe. In the car showroom we were not the people pressing our faces onto the windows of showy luxury vehicles. Nope, we were wearing sensible, knitted cardigans and talking to the salesperson about ‘longevity’ and ‘practicality’. Eek.

Fast-forward three full years, almost to the day, and I’m glad to say that my daughter, far braver and more interesting than us, has cooler ideas about how to drive her hearing aid choices.

There is a special style of coloured ear mould worn by some of the kids at Amelia’s school for the deaf that has not escaped her notice this year. Some kids have a different colour for each ear, while others sport dual-coloured moulds instead, kind of like a Yin Yang pendant. Only, you know, nice.

One of the older boys on her school bus – a unique and beautiful child we are lucky to know – has grey and green moulds that stand out in his ears like sea-coloured whirlpools.

Amelia observed these strikingly individual choices in first term and started reciting the names of the children with different mould colours to me from time to time.

Then one day out of the blue she told me she needed new moulds. Maybe in colour. She was quite coy about her request at this point so I said, “well, we just had new ones made over the summer and they fit just fine, so maybe later in the year”.

But Amelia had taken the idea to heart and she wasn’t about to give up. New ear moulds. In colour. I gotta get me some of those.

About a week before her latest hearing test appointment, I reminded that it was coming up. “Don’t forget we’re going to see your audiologist, IS, next Thursday to play some more listening games”.

There was a brief pause before Amelia replied hopefully, “We get the moulds in purple and pink?”

I stopped mid towel-fold (or something) and smiled to myself. “You bet honey, we can ask IS if she has time to do it after the test.” Amelia clamped down on my semi-promise like a great white shark on an errant surfer – there would be no other outcome except satisfaction of her deep hunger for coloured moulds.

By the time we (with my Mum in tow) were sitting across from IS in her office, Amelia could barely contain her excitement. We tried valiantly to get her to engage in the test but she was too distracted, antsy and generally off her game.

After a frustrating ten or so minutes, she finally turned to me and pulled my shoulder close to her body and whispered into my face, “Ask IS about the new moulds?” Amelia often uses me as her go-between with people but I have rarely felt more urgency than the moment those simple words hit my cheek and revealed the true meaning of her poor showing at the test.

My Mum, IS, and I shared a laugh because we knew there would be no point trying to engage her any further that day. If Amelia wanted new mould impressions taken then, by George, she would have them.

My girl sat still, like that child statue of three years past, in anticipation of this self-directed step in her life as a hearing aid wearer. The green gloop was poured into her ear once more and she waited ever-so-patiently for it to set.

IS produced the colour chart for the moulds and Amelia confirmed the decision we already knew – purple and pink – to be made in the half/half style of her sweet friend from the school bus. It would take an agonising two weeks for them to be prepared and then delivered by mail.

It took all of my Auslan skills to explain to Amelia that some man in a back office wouldn’t be able to produce the colourful moulds on the spot. She kept saying, “No, we wait.” After some wrangling, she reluctantly let go of her heart’s desire and went off to school.

It was a rainy, cold day on the school holidays when the magical delivery finally arrived at our house. I secretly retrieved the envelope from the letter box and attached her new moulds to her aids while she was in the bath.

When Amelia was dried and dressed, she waited for me to bring her aids back to her in the bathroom. Barely containing my own excitement, I carried them in behind my back and asked her to guess which hand held the prize.

Her eyes lit up with instant understanding and delight as she pointed to the left. No, they must be in the right.

I wish it was possible to capture for more than a moment the unbridled joy that shines out from a child’s eyes when they see something special they’ve longed to have and hold in their hands.

It’s a sight that never fails to reach deep into my chest and pull so hard on every heartstring, it’s almost painful. Almost.

But the look on her face when she tried on the new moulds for the first time, well, that was an image I wasn’t going to lose to fading memory. I snapped some photos as she preened (truly) in front of our bathroom mirror, so very proud of her custom-made bling.

Everywhere we went for the next few weeks Amelia would race up to friends and family to show them. She was busting to get back to school to now be a part of the cool kids group who have cut loose from the clear mould crowd.

We are so lucky to be able to send her to a school with other deaf children like her, who are learning together how to express their identities through things like their hearing aids.

They are not ashamed to wear them or have them noticed. On the contrary, they want to shout at the world in loud colours from rooftops, “look at me!” It’s thrilling to see Amelia’s personality and independence take shape through the choices she is beginning to make on her own, especially where her deafness is concerned.

At age five, she knows quite a lot about aids, implants, Auslan and even the sign for ‘deaf’, but she is too young to understand the combined significance of those things in her life. That process is slowly unfolding, inching closer to comprehension every year.

But seeing her assert herself so strongly and positively when it comes to ‘owning’ her hearing aids makes me worry less about how she will cope with the eventual knowledge of being deaf.

Amelia has a ‘come at me’ attitude to most things and I suspect on this score she will not waver. Only time will tell.

In the meantime it makes me happy to realise how far we have travelled from our (short-lived) days as conservative parents of a newly diagnosed deaf child.

I love to pile Amelia’s long hair high on her head so that people will see her aids. Yes, she is deaf and we are genuinely proud of that part of who she is.

And as usual, our daughter is light years ahead, taking us with her to the sky and back on the crest of an exhilarating purple and pink wave that never seems to crash before a new one rises again, brighter than before.