Never say Neverland

The boy who wouldn't grow up

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

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

Shrek in existenstial crisis mode.

Don’t mention parfait.

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

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

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

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

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

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

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

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

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

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

What could be more important than this?

What could be more important than this?

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

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

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

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

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

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

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

No caption required.

No caption required.

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

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

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

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

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.

Senses working overtime

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

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.

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

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

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

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

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.