Never say Neverland

The boy who wouldn’t grow up

QUESTIONS, always with the questions.

“What’s your name?” Amelia asked me for approximately the hundredth time that week.

I am forever* patient. “My name’s Melinda. What’s your name?” It’s always quid pro quo with us.

A shy smile. Amelia answers, “I’m Peter Pan … and I can fly!” She took off then, milky-white arms aloft, reaching for the sky. Well, the ceiling, anyway.

My six-year-old daughter is Barrie’s boy who wouldn’t grow up. And she can fly.

The meaning of this fantastical claim was not lost on me. I have carried heavy facts about Amelia around in my head for years, details that told me she was very far from flying.

From walking, from talking. Hearing. Learning. Connecting. Growing apace with her peers.

My Peter Pan was tethered to the tarmac by words like “abnormality of development”, “lower border of the normal range”, “limited”, “requiring substantial support”.

Those were the diagnostic words. Deaf and autistic was the poster copy.

It’s one thing to be told harsh things about your child’s development but it is quite another to absorb them. To believe them as the natural order of things.

Her cognitive test scores painted a bleak picture of her abilities when she was four. But who’s to say that was the whole story of who she would turn out to be?

Not me. I just held my breath and waited to see what would really happen.

Time has passed and Amelia’s progress has stunned us and all the people who love her and work to support her.

She can read. Read! By herself in her room, she reads out loud and asks for help with the tricky words and then goes on. “I can do by myself.” Yes, you can.

She can learn, about numbers and rules and abstract things thought beyond her grasp. She is interested in the patterns that shape her world and how things work.

She can sign and speak and tell us a little about her fears and feelings. She can express herself in two languages and through ribald jokes that make me laugh like a drain.

Amelia in full flight

She can listen and hear enough with her hearing aids to learn, to recognise our voices, to feel present in the world. She asks me to sing and holds her ear close to my mouth. Be still my heart.

She can run and jump and do forward somersaults in mid-air and suspend herself in a handstand on the front wall of our house. She is strong and confident in her body, as she proudly tells me with flexed arms, “Me muscles!”

She can, in a quiet voice, ask other children to play with her in the park. Take their hand and show them how to climb. Watch out for the little ones on the slide. Join in.

She introduces herself thus: “My name is Amelia and I wear hearing aids. I’m deaf.” Just like that.

See, she really can fly.

I love her unbridled passion for Peter Pan and all of the whimsy and magic that his story entails. He is brave and so is she, so the velvet-green cap with the feather truly fits.

But part of me wants to tell her that she is better than him, that fictional boy who fears growing old and who is trapped in the arrested development of the endlessly immature.

Peter Pan lives in Neverland, which is a wonderful place for feisty fairies called Tinkerbell and curious children to dream large, but it has its limits, as Barrie himself discovered. Never say Neverland, I reckon.

My Amelia lives in a more wondrous place than that, unimagined when she was two and four and dark limits blocked the sky from view.

Last week she said to me, “Mum, I can’t wait to be older.” Because life is exciting. Growth and development are a cause for happiness and celebration.

For now she is content to play at being Peter Pan, flying high around the lounge room and leaping from the couch launching pad to the stars.

But in Amelia’s ever-expanding world, growing up is the real aim. As time goes on, my quiet faith in this girl grows louder, more insistent. I don’t believe in fairy tales anymore, but I do believe in her.

As Barrie wrote so beautifully, “The moment you doubt whether you can fly, you cease for ever to be able to do it.”

* This statement is caffeine and sleep dependant

Ogres are like onions

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?

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.

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.

What’s love got to do with it?

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.

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 36^th 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.

It’s like being on

A merry-go-round

With no horses

And you can’t

Get off

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.

Senses working overtime

Defence against the senses (and my one chance to reference XTC)

Finding out that your child has an autism spectrum disorder (ASD) is a bit like reading the last page first in an Agatha Christie murder-mystery.

Through the big reveal, you might learn ‘who dunnit’ from Hercule Poirot or Miss Marple, but you can only guess at the what, how or why of the events leading up to that moment.

By this, I’m not referring to the missing pages of cause and effect that remain hidden behind my daughter Amelia’s latest diagnosis.

To me, the pursuit of causation seems like a completely fruitless and time-wasting preoccupation when emotional and intellectual energies need to be spent in much more constructive (and urgent) ways.

Searching for some random reason to explain what caused Amelia to be born with a disorder that some refer to as ‘atypical’ neurology, is about as helpful as locating a needle in a haystack only to find that the eye has rusted over and you have no cotton to thread anyway. And you really hate sewing.

What I mean is that we have an answer to one big question (is it autism?), but we are no closer to understanding the associated behaviours, to knowing why our daughter finds aspects of her life so difficult, or how we can help to ease her passage through life.

The bigger mystery than autism, which was not really an unexpected narrative twist for us (though no less painful), is the triggers for the autistic behaviours, like her meltdowns and hyperactivity.

But there are clues. You don’t have to be as clever as Poirot (or have such an impressive moustache) to read signs of significance in the way Amelia acts in certain situations and not in others to begin to draw some amateur sleuth conclusions.

Take, for example, her almost textbook behaviour as the ‘compliant child’ when she attends kindergarten across three days of the week. She is able to follow routines, generally does what is asked of her without complaint, actively participates in activities set up for her and does not act out at all.

Amelia the kinder-goer is the very model of a cooperative, well-behaved and calm child. That is not to say that her personality is subsumed by this conformist way of being. She’s not a robot; her independent spirit is detectable beneath the surface, but it seldom comes out to disrupt play.

It is simply that she is working very hard to observe and puzzle out the rules of the kinder game. I think there is security for her in knowing what to expect of this environment and what kind of behaviours are expected of her. Following an explicit routine and the lead of others provides her with a perfect map for fitting in.

Sometimes Amelia’s teachers spot her in a corner, silently acting out play she has seen performed by other children, or she signs conversations to herself. It’s like a dress rehearsal before she decides to step onto the real life stage of social interaction.

This mostly compliant version of Amelia is not, however, the child that I take charge of at the end of her kinder days. The moment I pick her up she switches gear into full-throttle girl, almost like the sight of me or the touch of my hand releases a pressure-valve inside of her.

She throws off her cloak of flexibility, of quiet observance and obedience and lets her wild hair down in the carpark.

It’s a battle to get her to notice, let alone watch out for, the buses, cars and people as she dashes ahead of me, heading for the two giant volcanic rocks that reside in the garden near the carpark. Her hometime ritual – and it is the same everytime – sees her scale each one and leap to the ground before we make it to the car.

Ready

Set

Go!

More than half the time, our journey home will be punctuated by an epic screaming fit in the back of the car. On the surface, the spark that lights these fiery outbursts is my failing to ‘get right’ something that Amelia wants to tell or ask me, like naming an object for her that she can see (but I can’t), interpreting a hard-to-understand question or retrieving a toy that has fallen beyond her reach (I prefer a ‘two-hands-on-the-wheel’ approach to driving as I don’t want us to die).

It’s a miracle we haven’t crashed many times over, but I’ve become quite skilled at blocking out the resultant shouting and flailing from the backseat and dodging the toy missiles aimed at me in the front. Amelia is a Jonty Rhodes in the making, you know, if the wicket is my head.

Sometimes the afternoon will continue in this upsetting vein, as her rage spills from the car and into the house until we’re both emotionally spent.

But what’s really going on here? I used to think the X-factor was all me, the ‘bad’ mother. I knew how well-behaved and engaged Amelia could be when I was absent, so naturally I associated her meltdowns with my way of parenting her.

Now, I’m beginning to see things differently. Ellen Notbohm (mother of sons with autism and ADHD) writes that for many children on the autism spectrum, sensory perceptions are disordered and can become overstimulated in certain situations.

These children can be deeply sensitive to the ordinary sights, sounds and sensations of daily life and feel under siege in environments where their senses are likely to become overloaded.

Bright lights, loud music, pungent smells, certain textures on the skin, all can combine to push the autistic child over the edge; it’s just too much sensory stimulation for their brains to sort and filter.

Imagine the impact of this often stressful way of receiving signals from the world, and then picture Amelia at kinder, a setting filled with competing stimuli and demands, where she spends between six-eight hours at a stretch.

It is remarkable to me that she is able to cope so well with these days, to try and understand what the rules are, figure out how to behave and to remain composed while her senses are working overtime.

Amelia’s paediatrician, KS, offered further insights into just how great a feat it is for her not to unravel during the kinder day. Because she is deaf, Amelia’s brain is already highly taxed by the effort to listen, hear and translate the sounds coming at her through her hearing aids.

Despite her deafness, she seems peculiarly, but not uncommonly sensitive to certain loud sounds. Amelia has started to say “too loud” and hold her hands over her ears when music blasts out of the PA at kinder.

Our one disastrous attempt to take her to a cinema had to be abandoned quickly. The music was so intensely loud and she couldn’t stand it, tearing her hearing aids out to find some relief. That’ll teach me.

It pays not to assume that a deaf child cannot be hypersensitive to sounds of a certain pitch or frequency, especially if autism is in the neurological mix.

With these new ways of understanding just how difficult everyday life can be for Amelia, it is no wonder that when she is released from her kinder day and the pressure to comply and cope with the situation, that a meltdown is so often the result.

It’s like that feeling you get when you come home from work and you close the door behind you, kick your shoes off and expel the effort of the day from your lungs. Home is a sanctuary, and you don’t have to pretend to be polite or obliging or anything other than your true self.

Again, our paediatrician gave us some reassuring advice on this score. She told us that it is precisely because Amelia feels so safe with us, so loved and protected, that she can exhibit her most challenging behaviours without fear of the consequences.

We provide the sanctuary for her to kick her heavy shoes off, and hopefully duck at the right moment should they fly towards our heads.

Now we understand a little bit more about the potential impact of specific situations on Amelia’s behaviour, it is important to be mindful about just how intensely she’s working to defend herself – either through detachment or anger – against a sensory chaos that is beyond her control.

The mystery might be incomplete, but we take this emerging knowledge about our daughter as a reminder to be ever-compassionate for her struggles, even on the toughest day in the hardest week.

Because the tiniest hint or evidence of Amelia’s need and love for us, even when her hands and voice seem to push us away, is greater than any big reveal delivered to us on the final page.

On being brave like Coraline

“Being brave doesn’t mean you aren’t scared. Being brave means you are scared, really scared, badly scared, and you do the right thing anyway”.

“I’ve started running into women who tell me that Coraline got them through hard times in their lives. That when they were scared they thought of Coraline, and they did the right thing anyway”.
— Neil Gaiman, on Coraline (2002)

Coraline, the intrepid traveller

Neil Gaiman’s book, Coraline, tells the story of the eponymous girl-heroine who goes through a mysterious door at home and finds a parallel-but-more-than-slightly-off version of her family life.

At first the door opens onto a bricked-up wall – a barrier between the here and there – but for Coraline it later reveals a once-hidden corridor to a place where her parents have buttons for eyes and everything is a little too perfect for comfort.

Like Pandora and Alice before her, Coraline’s curiosity (and profound boredom) compels her to open the door and enter without thinking first about the risks. Her mantra is and remains, “I’m an explorer”, and because her parents are too wrapped up in work to notice her departure, she takes advantage of the free rein.

In the breathtakingly spooky stop-motion animated version of the book made by Henry Selick in 2009, the door is a tiny cut-out set low to the floor. It has been papered over but its outline and keyhole are still visible and the old key still works in the lock. It’s a door that just begs to be opened.

Once unlocked, it exposes a magical, blue-lit worm tunnel that seems to shudder and move like it’s alive; I don’t think it’s a stretch to see it as a fantasy birth canal, delivering Coraline into the place beyond the door.

Searching for fun, adventure and nourishment, our girl finds her Other Mother and Other Father waiting on the other side to ‘love’ and ‘entertain’ her.

They are creepy renditions of her real parents, like the doll she is given that bears a resemblance to her but loses something vital in translation from fabric to girl.

But Coraline is smart and she instinctively reads a warning in the outer signs of this same-but-different world, like the horrifying, black buttons everyone has instead of eyes. There’s something so shiny yet dead about them – no smile will ever be reflected there, nor anything natural or good.

Though filled with freedoms and delights unavailable to Coraline ‘back home’, this ‘other’ place is really an elaborate trap. It’s a web dressed up to look like her heart’s desire by a very cunning spider (the Other Mother), who aims to catch, keep and devour her.

The request to have her own eyes sown with buttons by the Other Mother is a bit of deal-breaker for Coraline, as you can well imagine. The last time she goes through the door, it’s to rescue her real parents who have been captured by the Other Mother to draw Coraline back to her.

The courageous girl confronts many fears in her fight against the will of the spider-in-Mother’s-clothing; hideous things like dog-bats, a slug in an egg-case “as if two Plasticine people had been warmed and rolled together, squashed and pressed into one thing”, and a shapeless grub, with twig-like hands lunging at her in a dark basement.

Despite this catalogue of horrors, Coraline tells herself that she’s not frightened “and as she thought it she knew that it was true”. One can only marvel at her bravery, at her brilliant use of positive self-talk.

Gaiman’s wonderful, terrifying story and its film adaptation struck a huge chord in me. Aside from the delicious thrill of the tale as I tucked my feet under my body (lest a spidery hand should grab me from under the couch), the idea of being caught in one world while longing for another was painfully familiar.

Most of us live with disappointments and frustrations in the ‘real’ world and perhaps fantasise about an ‘other’ world, where the colours are so vivid and the experiences so rich we don’t have to confront hard things.

Coraline imagined a world where her parents would be different, remoulded into people who cook her appetising meals and exist solely to amuse her, and so she was offered a brief glimpse of what that life might be like.

It is a credit to her that she rejects that life as a lie, even if her real existence is less than ideal.

For me, an ‘other’ world would be a place where I have no big-ticket worries. In it, the Other Amelia, the facsimile of my daughter, is not deaf. She can hear everything and anything and she can speak fluently and tell me her mind. And she definitely does NOT have buttons for eyes.

The Other Amelia is a child without autism. The words disorder and delay are unknown to her, to me. There is no sensory chaos and making friends is easy. Anger, rage and hyperactivity belong to another hemisphere of experience. To another child.

We walk together slowly and she holds my hand, never running away. And we sleep for a very long time.

But if I take these things away from her, who is the child left over? Is it still Amelia or a distilled version of her, a person negated? Does she become like one of those husks left behind when the Other Mother is finished feasting on little souls?

She would be different, yes, and maybe her life (and ours) would be easier, I am not afraid to admit that I do wish it sometimes.

But she would not be my Amelia. To excise one element would be to ruin the whole, to make her less than she should be and much less than her strong personality makes her.

I myself have opened many doors containing fearful things since that first one, when I gave birth to my girl, and there is nothing scarier than suddenly becoming responsible for a tiny, vulnerable human being.

I didn’t know for instance that deafness was behind another secret door in the house of my family. I only knew that there was some dark problem lurking there and it had to be unlocked, no matter how afraid we were.

If Amelia can be brave, then so can I

As for autism, perhaps my greatest fear of all, well, that one has whispered to me through keyholes from the beginning, and over time it has become a shrill and insistent voice, demanding to be heard. Okay, I surrender; we have opened that door now and let the truth of it in.

Like calling out the bogeyman who lives under your bed (or Bob from Twin Peaks who crouched under mine for all of my adolescence and part of my adulthood), the most dreaded thing is never as daunting when you drag it out into the light.

I love Amelia more than I love my own life or anyone else’s. She isn’t defined by her challenges but they are part of what is shaping her, in the mix with her character, her brain, and her heart. So we must embrace it ALL if we are to keep her happy and safe on this side of the door with us.

But my anxiety about further unknowns surrounds me always, crowding me for space and air, and I can’t just hide from it in some fantasy world.

Because like Coraline, who my own gutsy daughter adores for her blue hair (and insists her own hair be styled to match), I have to do the right thing and face up to what scares me and keep telling myself, “I will be brave. No, I am brave”.

Not drowning, waving

Amelia will go her own way

Last night I dreamt that Amelia was running ahead of me near a water’s edge I did not recognise. I was sprinting to stop her but she was too quick for me.

She was laughing, her head thrown back in a pose of delight, as she looked back in my direction. Amelia was having the time of her life; the dream version of me did not agree.

I saw it all in hazy point of view shots. My hand as it reached out and missed her as she leapt into the air, pink backpack and all, and jumped into the water feet first.

The surface of the water as I dove right in after her, face forward, frantically searching the murky depths below for a sign of her.

The topmost handle of Amelia’s backpack – the one with the mermaids on – the weight of which had pulled her down fast, so fast she was almost gone.

And there was my hand again, elongated in supernatural elasticity, stretching out to grab that handle and then, ‘Got it!’, I had it in my grasp and I pulled my little girl up with all the strength I could muster.

I pushed her onto the bank and my husband was there to hold her, to roll her over while she coughed unwanted liquid from her lungs. I ripped the backpack off her shoulders; it was over and I woke up with a start.

Sleep was hard to find again after that – the fear and anxiety of my dream was all too familiar.

Amelia is so determined to go her own way in the world that I often feel no more than a powerless onlooker.

As a parent, so much seems (and is) beyond my control. Her deafness, her now-confirmed diagnosis of Autism Spectrum Disorder.

But I was forgetting about the hope that the real world Amelia brings to my daylight hours. In the morning she came to my bedside and reached out for my hand and I pulled her up into the safety of our bed.

I put my head on her shoulder and felt consoled by the sight of her, the feel of her warm body next to me, the smell of her hair.

Amelia saved me this time, from the dark thoughts that visit me at night, that haunt me even when I am asleep. And she reminded me that nothing, no pain or problem, is ever as bad as our nightmares make them out to be.

What is it that shines in the night sky?

Some moons look a lot like Noel Fielding

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To cochlear or not to cochlear, that is the question

Internal view of a cochlear implant

It’s not exactly a Shakespearean proposition, is it? I mean, Hamlet was preoccupied with epic matters like the meaning of life, murder and betrayal. As big decisions go, the gloomy Dane had heavy burdens to grapple with, so our little box of trials can hardly compare.

But the weight of the decision – whether to agree to a cochlear implant, or not, for my four year old daughter – has had me standing in shadowy courtyards talking to ghosts and pondering the slings and arrows of outrageous fortune.

It hasn’t driven me mad (yet) and it’s not an Elizabethan tragedy, but it ain’t no fun-fest either.

It all started late last year with a surprising hearing test result for Amelia. Every check-up since the beginning of 2011 had shown the same level of hearing loss, averaged across both ears: moderate-severe, sloping to profound in the higher frequencies.

At this level of loss – the final frontier before cochlear implant candidacy is considered an option – hearing aids can still work very well to give a child sufficient access to sound; enough so they can learn how to listen and how to speak.

Of course aids cannot close the gap entirely and many sounds detectable to our ears, like birdsong, will mostly elude her forever. But with them, Amelia is able to hear and repeat speech sounds that would not otherwise be accessible to her.

A child will only need a cochlear implant if they have a permanent severe-profound hearing loss and hearing aids are shown to provide little to no benefit at all.

If I have been thankful for anything since Amelia’s deafness was diagnosed, it was that we did not have to go down the road of cochlear implant surgery, with its intensive (re)habilitation and the added visibility of the processor that attaches to the receiver near the back of the head.

We had settled comfortably into life with hearing aids; they had fast become a natural part of our existence. At first it was hard to adjust to their intrusion in our lives, that when I got close to Amelia’s face or brushed against the aids, I would hear the horrible buzz of feedback created by the contact.

But it’s funny how quickly you do adapt and also how fiercely protective you can be of the new space you’re in. For us, hearing aids and a stable level of hearing loss were important threads in the security blanket we’d wrapped around ourselves to weather the change.

It’s no wonder that I did not ever want my baby girl to need a cochlear implant or any other kind of intervention that would cast us into yet another vortex of the unknown.

So, when I took Amelia to her regular check-up in October, 2012 and it showed that her deafness was now testing at profound levels, I felt like the sky was falling. It was a vast, bleak sky and it covered me in darkness. And fear.

I looked at the pen-lines that snaked across the audiogram in front of me, tracking Amelia’s hearing levels across four frequencies. They were steady at first and then jagged downwards sharply like a plane diving into the red zone, from 75 decibels to the depths of 110 (the scale is 0-120, with 0 representing ‘perfect’ hearing).

Not even the mighty Chuck Yeager could have turned this tailspin around, and that guy broke the sound barrier.

The result shocked the audiologists too – I could see it in their troubled eyes. We all just sat there looking at each other, hoping that there was another explanation for the sudden catastrophic change.

Had Amelia been distracted during the test? No, we all agreed she had been unusually calm and engaged, making her responses the most reliable to date. They had been able to capture four frequencies for both ears for the first time ever in one sitting.

I remember feeling so proud of her effort that day, but the result cast a pall over it. There was nothing to rejoice in here.

Perhaps it was some other kind of obstruction in Amelia’s ears? I have never wished so hard for poor ear health. No, they performed the standard tympanometry test and her middle ear function was free and clear. There was no wax or fluid to blame for this alarming result.

We were told that the next step was an immediate referral to the Cochlear Implant Clinic (CIC) for an assessment, particularly for her left ear which had recorded the most dramatic change. Some children are only implanted in the worse ear and wear a hearing aid on the better side.

Amelia’s level of deafness, which until this point had positioned her on the cliff-face between hearing aids and cochlear implant candidacy, now plunged her over the edge into a wholly unfamiliar world. We were definitely not in Kansas anymore.

I remember I had this stupid, polite smile on my face while our audiologists spoke about the assessment program, like they were telling me a story about the weather or the traffic. I would have slapped my own face if I’d been able to see it.

But if I had spoken too much or allowed the dread inside me to leach into my features, I would not have made it through the next five minutes, or the drive home, without totally losing it. And Amelia, as usual so blissfully unaware of the catastrophes befalling her, did not deserve to be confronted by my tears, my pain.

The experience took me back to the ground zero of our original diagnosis day and it felt nearly as horrifying, but I had good company there.

Amelia has grown to love her hearing aids

I found out later that week that our main audiologist, IS, had carried Amelia’s file around with her for days after the appointment and even took it home at night to try and puzzle out the result. To find some other explanation for it, other than a permanent one. We shared our mutual sadness and disbelief on the phone and I felt a little better.

So what is it that I feared about a cochlear implant? Why was I so resistant (as I still am) to the idea of it? It is indeed a wonderful technological development and has transformed the lives of many deaf children and adults. That is something I would never dispute.

But contrary to popular opinion, it’s not the deaf person’s equivalent of winning the lottery or finding one of Willy Wonka’s golden tickets. We did not hope that our child would one day be ‘lucky’ enough to need a cochlear implant.

Yes, we are fortunate to live at a time when this technology exists and in a part of the world where it is available to us. But finding out that Amelia had apparently lost a significant amount of her remaining hearing could never be a cause for celebration.

Cochlear implant surgery is relatively routine and low risk. But that doesn’t mean that it isn’t invasive and that agreeing to it for your four year old isn’t a gut-wrenching decision.

An incision will be made into your child’s head and part of their skull excavated to accommodate the internal receiver. Once the implant is in, it’s inside them for life.

Cochlear implants are not a ‘cure’ for deafness. When the external processing hardware is removed for sleep or bath time, an implanted child is still deaf, just as Amelia is at night when her hearing aids come off.

And in most cases, implantation will cause ALL of a person’s residual hearing to be destroyed.

Surgery is only part of the story. A cochlear implant turns sound into electric signals, where a hearing aid works to make sound louder. One simulates where the other amplifies.

It takes a lot of programming, effort and long-term commitment to help a child to interpret these electric signals through the implant. It involves learning an entirely new way of hearing.

If we were running out of time to find the right intervention for Amelia, an implant did not promise a quick fix. It guaranteed a much harder path than the one we were already on.

Whatever the circumstances, the benefits, or the urgency, you do not rush into a decision like that.

My husband and I agreed that if the CIC could show beyond any shadow of a doubt that Amelia’s progress and development would not continue to flourish with hearing aids, then we couldn’t in all good conscience deny her a cochlear implant. But we had to know for sure.

The assessment process is long and arduous, as it must be. No-one at the CIC wants to implant a child unless it can be proven that they will benefit from one.

From November 2012 to the end of February this year Amelia endured rigorous testing and re-testing of her hearing and her communication skills – there’s a multitude of appointments to attend with Ear, Nose and Throat specialists, speech pathologists, audiologists and so on.

I have written before about how Amelia finds tests difficult to navigate sometimes, so every appointment presented itself like a stressful obstacle to the completion of the assessment process.

It was an intense and often nerve-wracking program akin to being on a rollercoaster. The initial hearing tests in December and January conducted at the CIC confirmed the poor October results. We resigned ourselves to agreeing to an implant in at least Amelia’s left ear.

She went to hospital for MRI and CT scans to examine her cochlea, auditory nerve and brain, to make sure that implantation would be risk-free and achievable in her case (some children are born without a cochlea or auditory nerve making surgery impossible).

Amelia’s not a massive fan of hospitals or keeping still for doctors, so I had to pin her to my body with the help of two attendants while they put her to sleep, containing the rising sob in my throat as her flailing body slowly gave up the fight.

But it wasn’t all doom and gloom – the rollercoaster transported us up as often as it took us down.

Amelia’s communication tests showed that her speech and language was around a year off the pace, but for a child only aided for two out of her four years on earth, that showed an astonishing rate of development.

And just as we were getting close to hearing the CIC’s final recommendation, Amelia’s hearing tests shifted back to their original levels – to the blessed ‘moderate-severe/profound’. No-one could explain why the previous tests had been so dramatically different. Fluctuations are not uncommon, and for us it didn’t really matter.

These hearing tests along with the MRI/CT scans (which identified no internal problems that might cause further hearing loss) and the positive assessment of Amelia’s communication skills combined to give us a stay of implantation. After months of uncertainty it was a huge relief.

Amelia, relaxed and where I want her to be

The final CIC report said that Amelia is not a candidate for a cochlear implant right now, but if in six months her speech and language development has stalled, then we’ll be back in the courtyard wrestling with ghosts and one of the toughest decisions of our lives.

Amelia is only four years old. It doesn’t sit well with me to let doctors take a drill to her head without her permission or knowledge and potentially take something precious from her like the rest of her hearing, unless it is absolutely necessary. Not until all other avenues have been tried, tested and shown to be useless.

I think she deserves at least six months to progress and prove what she has been showing us all along – that she is an amazing little girl with more guts and determination than anyone I’ve ever met.

I know we might yet again have to weigh up the benefits of a cochlear implant, the evidence of which surrounds Amelia every week in her deaf kinder class, but thankfully for now we are free of this particular ‘sea of troubles’, as Hamlet himself might have put it.

Wherever we are headed next, I will put my hopes somewhere safe – with my daughter Amelia – who doesn’t know what a cochlear implant is, but she can tell me she loves me and hear me when I say it back, and that’s all the armour I’ll ever need.

Playing from the bottom of the deck

In this card game, poker faces are preferred

I haven’t said too much in the short history of this blog about my daughter Amelia’s diagnosis of autism.

I’ve touched on it and certainly described many related behaviours, but we are only at the beginning of what this news means for our family.

I’m reluctant to be too definitive about it because the diagnostic progress takes a long time and we are currently stuck in the no-man’s-land between one stage and the next.

Since March, when our paediatrican first put the words autism and Amelia in the same sentence, we have spent an agonising four months waiting to see the next specialist in the queue to assess and confirm the diagnosis.

While we have been in this frustrating state of diagnostic stasis, Amelia’s red-flag behaviours have persisted and some have begun to escalate beyond our reach.

As parents, we are running out of strategies to alleviate how far these things impinge upon Amelia’s generally happy day-to-day existence. We needed help at least a year ago, so July seems so far away, even if it’s nearly upon us.

I am trying not to worry, to smother my anxieties as they creep up my spine and into my harried mind. But it’s hard to hold onto the distant promise of answers to the question I ask my husband every night after we turn out the light: “Do you think she’s going to be okay?”

Last week, my Mum and I decided it would be fun to teach Amelia some card games. It was cold and rainy outside, so we thought some old-fashioned parlour games would keep us all entertained.

We opted for ‘Snap’, because it’s easy to teach and is great for learning about matching pairs and turn-taking. The three of us made a little circle on the floor and my Mum dealt us cards from the deck.

After a quick précis of the rules, the first game of Snap kicked off without a hitch. Initially, Amelia seemed more interested in her cards than the object of the game, but she was so happy to be hunched on the floor with us, thick as thieves, that it didn’t matter.

The she warmed up and started to appreciate the simple joy of smacking your hand down over a jumble of cards with a pair on top.

It made me laugh that she kept playing her cards from the bottom of her little deck, almost unconsciously. She would have made the long line of wily card players in my family terribly proud.

I have to admit that my Mum and I are outrageously loud and competitive people when we are fired up and this day was no exception. We were really getting our Snap-groove on, leaning intently over the cards, and screeching like banshees when a match was made.

We forgot to yell “Snap” and instead went with a sort of barbaric “Yaaaaaaaaaaaaaaaaaaaaah!!!” when a King fell onto a King or an Ace met its match on the carpet deck.

This should have been a simple and fun thing for us all to share on a rainy afternoon, and Amelia used to love joining us in moments of carefree hilarity. But this time she became deeply distressed by our laughter, by the volume of our voices and the changes to our facial expressions, caused by the ecstasy of winning. By our happiness.

This type of distress has been happening a lot lately. As soon as voices are raised in excitement or people are talking in higher volumes or laughing loudly she is gripped by a terrible anxiety and starts yelling “No laughing, no laughing!”

Amelia runs at us and puts her hands over our mouths, desperate for the change in atmosphere to cease. We have to hug our girl to reassure her that everything is alright.

Her fingers will frantically pull at my mouth as she shouts at me to “smile, smile, Mummy!” There’s something comforting or recognisable Amelia wants to see restored in my expression, volume and tone.

She watches my face incessantly but her wires are all crossed so the signals that should tell Amelia that I’m happy/pleased/relaxed are being received as a mixed message that is both negative and scary.

This extreme reaction now intrudes on many conversations or occasions of spontaneous laughter both at home and when we’re out visiting people. It is upsetting and baffling to watch and experience.

The rainy day card game was no different. Amelia just couldn’t handle the raucous play going on around her, even though we tried to explain that laughing is good and we were only having fun. But she didn’t understand.

There was something so dreadful about the gulf between the collegial laughter that my Mum and I were so enjoying and her absolute terror – and that’s what it was – at the sound and sight of us.

We fought hard to control ourselves, like naughty schoolgirls confronted by a forbidding teacher who definitely does not get the joke. But in this case, it was my poor daughter, who was now sobbing and begging us to hold her so she would know that everything was fine in the world.

But it’s not, is it? How can it be when a game of cards and shared laughter can reduce Amelia to an emotional wreck? What is happening inside her to make her so increasingly confused and upset by these shifts in the behaviour of people she knows so well? How can the sounds of merriment be so lost in translation that they become threatening to a child?

How did we get here? And how on earth do we find our way out?

July cannot come soon enough for the number of questions we have and the answers we so urgently need.

Going the distance

Whatever you do, don’t drop the baton

Parenting sometimes feels to me like an extended relay race with multiple batons – let’s call them challenges, diagnoses, worries, crises, whatever fits. You think you can hand one off as you grab for the next one but it just doesn’t work like that.

No, you end up carrying them all in a messy jumble and hope like hell they don’t come crashing to the floor.

Over the last four years, every time my husband and I have thought we could genuinely release one of our worries, we have gained a new one. The load lightens for a minute and then our hands are full again. We never know what hurdle is waiting for us around the next corner.

I am a keen recreational runner in my spare time, but this parenting race I’m running feels like a gruelling marathon that I’ve barely trained for. There’s only so many times you can ‘hit the wall’ before you feel like stopping.

It’s not always lonely – there are other people on the same track – but ultimately it’s your legs and willpower that must carry you over the line (if you can find it). Sharing your burdens might halve them in size, but you still feel the weight of them on your back, in your chest and on your mind.

To re-cap, our experience as Amelia’s parents has so far included a minor kidney defect identified in utero, developmental delays (gross motor, speech and language), deafness and the newly identified Autism Spectrum Disorder.

And I used to think running up Anderson Street next to the Melbourne Botanical Gardens was hard.

From birth to her second birthday, doctors and nurses planted seeds of worry in my mind about Amelia’s achingly slow progress to crawl (13 months) and then walk (21 months). Though more than fashionably late, she found her feet eventually and I let out a long, slow breath of relief. I remember the thought, ‘Now they’ll leave us alone to get on with living’.

When Amelia was two, we went to see her paediatrician for a final kidney check-up. I distinctly recall how great it felt when he gave her the all-clear – her kidneys had grown to their proper size and the minor defect had corrected itself naturally.

So, no more ultrasounds or trying (and failing) to get urine samples when she had a high temperature. Consider that baton passed.

In the same appointment, the paediatrician asked Amelia to come over and talk to him at his desk. He was holding a rabbit toy and he wanted her to tell him where the eyes, ears and mouth were.

At first she was happy to stand and look at the rabbit but she became confused by his questions and quickly ran away to the safety of the play corner.

That’s when he said to us, “Well, I don’t think she’s autistic, but there is something wrong with her”.

At the time, the suggestion of autism seemed absurd; this was a happy, engaged child who made eye contact and seemed to have great empathy for others. It was a part of our child’s future we were not at all ready to face.

But despite his sledgehammer approach, I knew the paediatrician was right. There was something wrong – Amelia was two and she could hardly speak – but I had no earthly idea what it might be.

I feared yet another developmental delay but he referred us to a speech pathologist and flagged the need to test her hearing (routine for speech and language assessments).

We’d handed off one baton and gained another, all in the space of five minutes. I think we deserved a rest stop or at least a drinks break or something.

After talking to a GP, I was convinced that Amelia had too much fluid in her ears from infections and would only need grommet surgery to free up her middle ear and allow the clear passage of sound.

This type of temporary hearing loss (conductive) can be as catastrophic for speech and language acquisition in infants as the more permanent kind. I grasped onto the idea a little too tightly and put all my hopes in it.

I thought we would go to the hospital and our problems would all be sorted out in a matter of months. Then, my family would be back on track.

Sadly this is not what was proven by the Ear, Nose and Throat Surgeon or the audiologists who tested Amelia. She had no fluid. Her hearing loss was discovered to be permanent and irreversible.

I’ve covered in detail how this diagnosis affected us and the decisions we made as a result of it. It’s just the hand she was dealt. We can help Amelia to carry this baton for as long as she needs, but in the end it’s her race to run.

But sometimes batons aren’t thrust upon you when are looking the other way. There are occasions when you run after them, chasing down the truth with hands outstretched.

For about a year I have been the one pushing us headlong towards the unveiling of another challenge – one more problem below the surface as yet unnamed.

You’re gonna need a bigger boat

In this, I’ve been like Chief Brody in Jaws: I knew there was something else in the water even if sceptical Mayor-types kept telling me the beaches were safe. No really, send the children in with the shark because everything’s fine.

I had watched Amelia for a long time and I knew that deafness, even with her lack of speech, was not the reason behind her rage, social isolation, meltdowns, obsessiveness and curious anxieties.

We needed urgent help if we were going to get through the next stage of the race without the wear-and-tear of life’s pressures taking its toll.

It took us more than six months to get in to see the only paediatrician I thought might have the answers. She has vast professional experience working with both deaf and autistic children, so she seemed uniquely placed to guide us.

Her expertise and popularity made her nearly impossible to see, but our Early Intervention service wrote a letter on our behalf and we were fast-tracked to the top of the waiting-list for exceptional cases.

It was a killer letter but the picture it painted of Amelia’s struggles (and ours) was not easy to read, even if it was true.

I sat in the paediatrician’s office the first day and said, ‘Are we right to be here, do we need your help?’

I asked this because I still have this peculiar feeling – maybe it’s just plain old hope – that one day a doctor will look at me and say ‘What are you doing here, your child is fine’. It’s hard to explain how I can still think this way after the catalogue of trials we have faced, but I do.

But our new specialist just smiled at my question and said, ‘Oh yes, absolutely’.

We handed her our concerns and she took them from us and turned them into something useful, a diagnosis we can work with. The race isn’t over but at least now we know which way to go. Even if it’s towards more appointments and steep learning curves, we are closer to understanding Amelia now than ever before.

So we keep on running, from checkpoint to checkpoint, trying to refuel when we can and stay fit for the long haul. It’s not about the fastest time per kilometre and it’s never been about winning. It’s about stamina. And getting up to a decent pace each time you are passed another baton and making it. Just making it.