Awake is the new sleep

Sleeping soundly with 'stuff'.

Sleeping soundly with stacks of ‘stuff’.

IT’S DAWN, barely a trace of sunshine coming through the windows, and already I can hear her crashing around in her room.

The Kraken, also known as my six-year-old daughter Amelia, has awoken.

I know this because I can hear her clumsy, elephant-like footfalls pounding into the floorboards. Amelia is awake and the whole world must know it.

It would be churlish to complain because she is deaf and so has no earthly idea how loud she is, as she moves around gathering her numerous comfort items from the bed for transportation into the lounge room.

This is the routine for her, everyday, my girl who hears little of note without hearing aids and is well and truly on the autism spectrum.

Amelia uses various collective nouns to describe her personal treasures. They are her ‘things’, or sometimes, her ‘stuff’.

“Where is my stuff Mummy? I need my THINGS!”

I always know where her stuff is because it is never far from her side. Amelia burrows these objects into her bed covers at night and I have to creep in after lights out to extract pencils from her hair and uncurl sweaty fingers from straws, tape, glue-sticks. The lot.

For a young child with autism, the ‘things’ have a deep meaning that is mostly beyond our reach. But what we know for sure is that they are absolutely vital to our little magpie’s sense of security, her sense of self.

Amelia clings to these things like a lifeline to some magical source of strength and energy known only to her. With them, she is safe.

And so, each morning, this curious set of bits and bobs is dragged from her room and deposited next to her on the couch. Amelia is now ready at 5am, or 6 if we’re fortunate, to kick off her day.

It’s then that I feel her presence in the doorway to our room. She hovers there uncertainly, watching for movement, for signs of waking life.

I resist for a minute but I can’t help but lift my weary arm to offer her a tiny wave – words cannot travel the distance to my beautiful deaf child but one gesture shows her the way is clear to approach.

And with this green light Amelia runs to my bedside, full pelt, to grasp my hand and throw her body across mine.

It’s easily my favourite time of day, this part when our bodies are so close and her face turns to my cheek to plant big, passionate smooches there. And if I’m very lucky, she might reach up to softly stroke my face with her hand.

Her sometimes-rough hands become gentle in the morning light.

I am barely awake but the smell of her, the feel of her, is everything to me in that moment.

Amelia is up and now so am I, and no matter what the hour, no matter how sleepless the night, and no matter how many ‘things’ I’ll be carting around for the rest of the day, in this perfect moment my heart is filled only with happiness.

[I wrote this piece yesterday after a wonderful day spent in a Gunnas Writing Masterclass with the incomparable Catherine Deveny. The task was to send her a piece written between 10am and 10pm on the day. ‘But how? I’m going straight out to dinner and to see a show. I won’t be able to do it’. But no excuses would do. So I texted my husband the simple words…’Bring your laptop’. Later, parked in our car on a city street, I sat with the laptop on my knee and frantically tapped out this piece from the notes I’d scrawled in the masterclass. I had to do it – would never forgive myself if I didn’t – and so I did. I emailed it to Catherine, typos and all, and felt a great sense of satisfaction. The feedback and support from Catherine the next day was absolutely thrilling and so that mad writing session in my car felt even more worthwhile. It was such a great experience that I’m sure any aspiring writer would enjoy. Plus, Catherine wears amazing shoes with little musical notes engraved on the soles. So there’s that too.]


Kindergarten klepto

He's Artful and a total DUDE (Anthony Newley in Oliver Twist)

He’s Artful and a total DUDE (Anthony Newley in Oliver Twist)

One of my favourite movies of all time is David Lean’s masterful version of the literary classic, Oliver Twist, one of two brilliant Dickens adaptations made by the director in the 1940s (the other being Great Expectations).

Lean manages to bring Dickens’ colourful world to life in shades of black and white; from the pitch-perfect performances (Alec Guinness’s unparalleled Fagin) to the way he renders the horror of Nancy’s murder by showing only the distress of Bull’s-Eye the dog, frantic to escape the room and all of that screaming.

But it’s the pickpockets I love the most, led so ably, so charismatically, by Anthony Newley’s splendid Artful Dodger. If you’re going to be poor and homeless in 19th century London, you might as well do it in style.

Little did I know as I watched this film in my childhood, transfixed by the characters on screen, that I would one day grow up to raise an artful little Dodger of my own.

Because my daughter Amelia is a bit of a kindergarten kleptomaniac, prone to cunning sleights of hand that end with her pocketing classroom objects in the ‘secret’ spaces of her kinder bag.

It started with a tiny fish of the plastic variety. It appeared one day in the side pocket of her backpack and I thought, “Oh, maybe it just fell in there by mistake.” You know, the way inanimate fish can sometimes jump into zip-locked pouches.

I quickly learned that there were no mistakes, only carefully-squirrelled triumphs prized by this wily klepto-in-the-making.

And Amelia is quite the crafty customer. She has learned how to purloin a special item during the day and, undetected by adult eyes, find a quiet moment to hide it in her bag for later.

Patience is not a virtue common to Amelia’s waking hours, but when it comes to executing petty acts of larceny, she has more of it than any Saint could claim.

It took me a little while to work out precisely what she was doing – what her racket was – but one day on the way home from a kinder pick-up, I looked over my shoulder at her in the backseat to find her searching her bag for something. It was the loot of the day as it turns out and she held it aloft to me with barely contained glee.

Amelia takes small things like play-dough, toy cars, pencils, marbles – I don’t think she’s that discerning or even interested in the things themselves. Maybe it’s the success of a carefully planned five-finger discount that really excites her.

My (boring) role is to play the anti-Fagin as I collect up all of the stolen artefacts for return to their rightful place.

I had to rat her out to her kinder teachers too. They now know to conduct a little frisk of Amelia’s bag at the end of the day, running a quick hand scan for pilfered products pocketed by my cheeky child.

The teacher holds them up to me one by one through the glass of the kinder door (carefully out of Amelia’s sight) and I nod or shake my head, confirming or denying if she is the legal owner.

In these moments, I wonder at the twists and turns of Amelia’s behaviour and I also recognise the humour she brings home with her too, alongside the pocketed stuff.

The other morning, one of the teachers said to me, “Do these bangles belong to Amelia? They were left behind the last night.” I replied, “Well no, but check her bag at the end of the day and ask me that question again!” We couldn’t stop laughing.

We chuckled because we adore Amelia, our kindergarten klepto, even if we’re not really sure why she does it. It has to be connected in some way to her need for hoarding and the obsessive-compulsive collecting of arbitrary things that are important to her in some way.

Apparently, she’s just got to pick a pocket or two. Or three.

Amelia does the same thing with DVDs, which she loves to watch but equally gets a kick out of gathering into groups and hiding under her bed covers. I never know what I’m going to find when I make the bed each morning.

It’s just another example of the slightly strange acts that pop up in our family soup from time to time and then fade when Amelia doesn’t need to do them anymore. She’s not hurting anyone and the things she ‘steals’ do not belong to other children (thank god).

So while I’m not about to reward or reinforce the dodgy side of her artfulness, I think I can gently guide her to some kind of understanding or awareness without stifling her, well, individuality.

We talk to her about what she’s doing, and then we give the little bits and bobs back each week (when we can find them or separate them out from her own junk).

Once Amelia has developed an obsession with an object or an activity it is very hard to convince her to change course in any way.

Like the orange and black Matchbox car which keeps reappearing in her bag, no matter how many times I restore it to its kindergarten home.

It has struck Amelia’s magpie-fancy for some reason, so I guess I’ll just continue taking it back in this endless loop of secure-steal-stow-reveal-return until she is ready to find a different way of expressing the innermost parts of her self.

Benevolence worked for Oliver Twist, so why shouldn’t it do the trick for Amelia? His time as a nascent thief was short-lived so I’m hoping my resident pickpocket will soon turn over a new leaf instead of stashing it in her bag.

[For you, RJH, with love]

Going the whole hog

Just a girl and her novelty hog

Just a girl and her novelty hog

For a four-year-old with a lust for life, it was love at first sight the moment Amelia clapped her eyes on the bright pink hog mascot who was working the room at her cousin’s birthday party.

She spotted his towering porcine frame from across the restaurant, and a feverish light went on in her eyes as though candle-lit from the inside.

To me, this novelty hog looked like a reject from the puppet cast of Sesame Street – a little too grotesque, too cut-price, to ever really make it ‘where the air is free’.

But who cares what I thought of his polyester charms? Not my daughter.

Amelia careened across the room to meet him and gazed up at his curved, white tusks and incongruous sunglasses (I mean, indoors, I ask you).

She didn’t wait for a sign or a green light, she just leapt into his furry arms and held on tight. It was the embrace of long-lost love, of the hog you’ve waited for your whole life but never dared dream you’d meet on a Sunday night at Highpoint Shopping Centre.

Possessed by her need to keep him close, Amelia placed his arm over her little shoulders and they took a turn around the restaurant like a King and Queen greeting their subjects with restrained magnanimity.

The hog-King (in reality a jester) was clearly on an hourly retainer to bust some sweet dance moves for the receptive child diners. Amelia joined hands with him and twirled, moonwalked and swivelled her tiny hips in perfect time, a graceful partner in this modern ham-hock jive.

When it was time for the hog’s smoko break, my girl was bereft and sat in the hallway near the kitchen awaiting his eventual return.

I had to find a way to prevent her from searching for him in the off-restaurant space behind the ‘do not enter’ sign.

So, I broke that covenanted rule about not telling a lie, either white or black, to your child and said, “Amelia, your friend’s gone to the toilet but he’ll be back soon so please come and sit down with us at the table”.

For a moment, I thought I had broken through her Pepé Le Pew-style pursuit of the party mascot until she signed to me that she would also like to go to the toilet.

I gave Amelia the benefit of the doubt and escorted her into the cubicles. But I had been hoodwinked by a master because she dashed ahead of me and started beating on the closed toilet doors, looking for her true pig-love, and calling, “Hello? Hello?”

Good one, Mum. Lord knows what the women in the locked cubicles made of it.

I dragged her outside and explained the truth that this time she just had to wait it out. The poor hog was tired from all of his grooving and greeting and needed a well-earned breather.

This story she was prepared to accept but her eyes never left the kitchen corridor, willing him with all her steely might to return.

When the novelty hog finally reappeared, Amelia ran to him for another long hug and bless that person behind the fluffy pink costume, he did not break free until she was done.

And then they danced once more and paused to capture the moment on film, to freeze in time some joy amidst the evening chaos.

The hog lifted his thumb in mute approval and Amelia did the same – they were at one in this as they were on the dance floor and for a moment in her little girl’s heart, filled to the brim with love for a hog with no name.

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.