Time to fly

Just in case you were wondering what I’ve been doing since my last post in August, 2016, here is a little preview of my soon-to-be-published book, Amelia & Me. You heard. The job is nearly done and I’m ready to take it to the bank. Or the library. Seriously, I will bring it to your house.

I’m so proud of the final cover design which I think hits all of the right notes for our very personal story. It was really important that the main photo of me and Amelia should convey our closeness, our directness. We look at the camera the way we look at the world – front on and without flinching.

It’s been a wonderful process over the last ten months pulling over three years of writing together into a manuscript and working with awesomely clever self-publishing, editing and creative people to realise my dream. It takes a village, or at least a super cooperative hamlet.

So, watch this space like a hawk. The proof is in the, well, the proofs. I’m about to finish my final edit before I hand my baby over for printing. It’s scary and exhilarating and I can’t wait.

It’s time to fly, my friends. Don’t look down.

 

Shock and awe

Drawing strength from his little girl

I DIDN’T tell her everything.

How could I? It was hard enough to hold the trauma of it in my own head.

I didn’t tell Amelia that her Daddy had collapsed at the hospital, on the hard, cold ground of the car park.

That I thought he’d fallen over behind me until I saw the way he was lying, arched forward in a twisted ball of agony.

I didn’t recount for her the sounds coming from his mouth in that moment. His urgent struggle to breathe. Unforgettable sounds that escalated to a primal wailing that ripped through his body and ricocheted through mine.

What use to her would it be to paint a vivid picture of that night, flashing in my mind like a horror movie every time I closed my eyes?

I see it all in colours and let me tell ya, it ain’t no rainbow.

There’s the white of my tensed knuckles gripping onto her Daddy’s shirt as three of us tried to keep his convulsing body on its side.

The hideous transition of grey to blue as his face changed hue. That was the moment when his heart stopped. For one minute, then more. Seven all told.

To me, the time stretched into infinity. Seconds expanded into excruciating intervals of pain. I thought he was lost to me forever.

After that there was no colour at all, only panic and movement. Doctors and nurses running into the car park from the hospital corridor with life-saving instruments. I was dragged away.

It turns out it wasn’t our sweet man’s time to die that night. Maybe Lady Luck was smiling down on us. I’m part-Irish, vaguely Protestant, wholly atheist, but I thanked the Gods with all my heart.

Damn it, they owed me one.

Next morning, it was my own mother’s job to pass on the news with careful hands to her grand-daughter. I can think of no-one better for such an important task.

She said: “Honey, your Dad had a sore heart and he went to the hospital feeling sick but he’s much better now. He’ll be home in five days.”

Amelia paused over her breakfast, eyes suddenly shining with almost-tears but her internal dam walls held them in.

My brilliant Mum recognises that explaining time frames to our girl helps her to feel safe. Together they counted out the days on their fingers, reaching Monday as the likely date of her Daddy’s return.

Amelia nodded and her eyes cleared; she could cope with that.

The note from school the next day read: “Amelia seemed a little sad today.”

I watched her out of the corner of my eye, looking for signs of melancholy or worry. As usual, Amelia’s deepest emotions remained just that, buried in the subterranean depths of her enigmatic heart and mind.

But I know that just because she’s not asking questions doesn’t mean she’s not thinking intensely about the world around her.

So in a light voice, I asked her straight out: “Baby, are you feeling a bit sad that your Dad is in the hospital?”

Her reply was prompt and awe-inspiring: “No. I’m strong.” She followed this with a typical Popeye flex of her arms.

Conversation over.

No. I’m strong. You could have picked me up from the floor.

Her response signalled two things to me. One was that she really didn’t want to talk about what was happening. That her way of dealing with the sudden change in our lives was to soldier on as though all was well. I could only respect that.

On a more literal level, Amelia really was saying to me, “It’s okay Mum, I’m tough. I can handle it.”

This wasn’t some statement she’d heard somewhere and was parroting back to me without meaning.

At six, sometimes Amelia’s behaviour still resembles that of a three-year-old. But here she understood that strength is something intangible you call upon in the darkest moments to make it through.

I saw this understanding take further shape when she saw her Dad in the hospital for the first time. She didn’t speak but she held him in one of the gentlest, longest hugs of her life. His silent tears poured into her hair and she held him longer still.

So, I didn’t need to tell her everything, did I? There was so much she already knew. Talking was hard enough for me anyway. Eating and sleeping almost impossible.

Amelia’s very real strength rose up to bolster my own. At night, I held her body close to mine and she placed a hand tenderly on my cheek. She kissed me there with wet lips but I didn’t wipe the moisture away. It made me feel alive.

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

On finding solace in the dark

PEOPLE OFTEN ask me what autism is, or what it means to have a young child who is on the spectrum.

It’s not an easy thing to articulate. All I can reach for are the behaviours that seem to spring from that enigmatic well.

If you asked me that question today, I would tell you that parenting a child like my daughter Amelia is still much like being on a rollercoaster.

The carriage holding your family might hover on an up-swing for months and you feel that pleasurable excitement of progress in the pit of your stomach.

You yell into the oncoming wind: ‘We’re making it, we’re really getting somewhere! Upwards and onwards!”

But today, like every day for the past six weeks or so, we’re not getting very far. We’re deep at the bottom of a trough and the wheels aren’t moving anymore.

I think they disintegrated on the way down some invisible ramp and now we’re sliding backwards.

In this trough we are locked in yet another lengthy battle of wills with our daughter. It’s the Hundred Years War all over again. We might have taken Agincourt but that doesn’t mean jack in the long run.

Every day is filled with screaming fits, physical outbursts, nocturnal wanderings and ever more screaming.

We have been here so many times before, but my god it never gets easier. We’re nearly seven years in and some days I wonder how much longer I can hold on.

Last night around dinner time when the screaming began for the fourth time, I walked silently into my room and crawled onto my bed in the dark to escape my own child. In that dark I felt no comfort but at least the space was quiet and it was mine.

The dark is the right place for me in those moments. I can’t see myself (or her) anymore, I can only hear the sound of my breathing.

The dark is heavy and that is what I want. To allow the blackest thoughts in my head to wash over me as I lie there. There’s no use fighting them, pounding as they are to get out. Might as well set them free.

Lying on the bed I curl into a ball and weep. I cry because I am so tired I don’t really know how it is that I can function in the day. And because I feel a momentary yet powerful sense of defeat.

In the shadows I know only that I am losing this battle – not the battle to beat Amelia at this relentless ‘game’. Nobody’s playing around here. 

No, I am failing to help her to handle the frustrations that she cannot yet manage on her own.

I hear taunting voices in that dark room too.

They say: “There’s nothing wrong with Amelia. She’s only like this because you are a bad parent.” (Yes, in my head I italicise for emphasis.)

To those voices I say: “Come into the dark with me and see how long you’d last. You know nothing, cruel, hateful voices. Get away from me and never come back.”

Then suddenly into the dark comes my real, live daughter, the one I’m taking refuge from. She puts a hand onto my back and holds it there. I reach over my shoulder to touch her, to tell her she is welcome there with me.

Amelia lies down next to me and curls her arm around my neck. The dark brings no true comfort, but her affection does. She kisses my cheek softly and presses herself into me. The darkness shifts a little and loses something of its heaviness.

I’m no superhuman and I’m not a machine either. The more confronting behaviours that define Amelia’s autism naturally penetrate beyond the surface of my skin.

My resilience is not bottomless. On such little sleep over so many weeks I can feel myself start to fray at the edges. I forget where I’m supposed to be going. I lose my way.

In this state it’s so hard to know what to do to. Sometimes I want to run so far away that no-one will ever find me. But I only ever get as far as that room, where only the dark will do.

And it is here, where all is finally, blessedly quiet that Amelia reaches out and brings me safely back to myself. With empathy and love we hold each other in the dark and start again, as we must, every time.

Mr Marbles’ Midnight Run

Do I need a reason?

THERE ARE very few sure things in this life. The rising of the sun in the east. The perfection of Jon Snow’s hair, swept back by the wind above the Wall. Death. Taxes. Did I mention Jon Snow?

I would add another certainty to this short list – the inevitable nocturnal stirrings of my unsettled six-year-old, Amelia.

She has forgotten how to sleep and we can’t remember when we ever did.

The pitter-patter of tiny feet long wished for in our pre-parental phase of life has been replaced by a less welcome sound.

That is, the inelegant, stamping footfalls of our daughter, risen from her bed in the darkest hours of the night, running through the house.

Hell-bent on fun and mischief. Foraging for food. Maternal comfort. Her iPad. Anything except blessed sleep.

I have heard the Chimes at Midnight, at 2am, at 4am, and they doth toll for ME.

My husband and I have grown accustomed to sleeping with our eyes barely closed, our ears trained on the corridor space outside our room.

Because we know she’s coming. It might not be tonight but it will be very soon. Two good nights in a row are a harbinger of a full week of horrifying wakefulness to follow.

It’s like that great line from Platoon, when King says, “Somewhere out there is a beast and he hungry tonight”. I don’t mean to compare my first and only child to the Viet Cong, but when we’re cowering in our bed/bunker, the helmet would seem to fit.

I have learned from other parents of autistic children that this night waking practice is not uncommon. And it can be long-lasting. One child I know of is twelve and she still wakes constantly through night, searching for snacks and televisual stimulation.

Twelve? I can’t do another six years of this and hold on to my sanity. As it stands, I sometimes can’t remember my own name.

But what disturbs Amelia’s sleep? Why can’t she remain settled, secure inside the soft, thick blankets I wrap around her to keep her warm?

Sometimes I’m certain it’s because she is anxious, terrified even. She is deaf and at night I wonder if the shadows don’t crowd in on her, and frighten her down to her cotton socks. How would I even know?

One night Amelia told me that her curtains were whispering to her. No, they were singing. When she said that I looked at the gentle, green folds of her drapes and thought, if that’s true then I’m out of here too.

Her imagination must be powerful because she can’t hear anything remotely like a whisper, or a curtain-song.

The night is dark and full of terrors, as Melisandre from Game of Thrones, would say. Everybody run.

And yet another part of me suspects that Amelia is foxing. For her the night is merely an extension of the day. Just another moment in time to fit in the things she loves to do. Like eat, draw, create and laugh at her funny little TV shows.

If I didn’t know better, I’d suspect she’s only pretending to sleep while she waits for us to be out of the picture and she can have her run of the big house for a few hours.

Recently Amelia started hunting for audio-visual devices at night until we locked them all away. We have discovered her sitting up in her bed at midnight, surrounded by a menagerie of toys, drawing items, snacks and her iPad propped happily on her knees.

Her defiant face in response to her Dad’s appearance in the doorway says, “What’s the problem, mate, I’ve got this totally sorted. Shut the door on your way out”.

Mr Marbles is on the move.

We’ve taken to calling her ‘Mr Marbles’. My husband started it; it’s a Seinfeld thing. The wonderful ‘Chicken Roaster’ episode when Jerry has to cohabitate in Kramer’s apartment with a creepy (and of course as it belongs to Kramer, this qualifier is redundant) ventriloquist’s doll called Mr Marbles.

Jerry becomes certain that the doll is going to come to life in the middle of the night and kill him. Despite Kramer’s assurances, Jerry sees a doll-shaped shadow move past him on the wall, then hears rapid footsteps.

Holding the blanket up to his chin Jerry whispers in terror, “Hello? Is somebody there? Mr Marbles?”

This is where we’re at now. Lying in wait for our very own, albeit much cuter, Mr Marbles to hop out of bed and come running down the hall. We clutch the bed covers in mock horror, but this pantomime belies our true fear. Of never having a good night’s sleep again.

We amuse ourselves so that we can cope with the regular disruptions, the impact of the deprivation on our lives. The nights when our agreed ‘contract’ with Amelia is broken yet again and she screams for hours for comfort and attention. It’s harrowing.

It’s hard to be strong at 3.30am when you’ve already been awoken at 11.30pm and you’re trying to hold firm to the rules about only going in to see her for a short amount of time and then not at all after that.

I have allowed her to have things I shouldn’t in those moments. Like access to our bed. Or her iPad, just for a few minutes (in reality hours), so that I can rest my head once more.

But she won’t learn if we continue to bend to her mighty will. If she has forgotten how to settle herself, how to stay in her room, then we have to remind her. Help her to remember what to do. How to rest.

During the day, when we’re all in a reasonable mood, I talk to her about things she can do when she’s awake in the night. She can read or draw in her bed. Cuddle her bears. Go to the toilet. Close her door to feel safe. I will come if she needs me but only for ten minutes. After that she is on her own.

Even if she screams and tears the house down and the neighbours wonder whether they need to involve the DHS.

So far we are sticking to our agreement, but it’s early days in yet another rebooted strategy and Amelia is always looking for loopholes. A weakness in the plan. In us.

This morning I heard her wake up at 4.30am, earlier than her usual 5am rooster call. She rarely, if ever, has made it past 6am in her life. She knows she is not allowed to get up until 5 and then she can have her run of the house.

Today she worked out how to manually accelerate her alarm clock so that the time was ‘just right’ in the fairytale parlance of another mischievous blonde. Her Dad got up to tell her it was too early and she protested passionately, “No, look!”, dragging him to her clock with the revised numbers, the truth written in neon.

We can hardly compete with that, can we?

Amelia running her own show.

Post five o’clock, Amelia is all business. She makes her own breakfast: Weet-Bix or porridge in the microwave. I used to cringe into my pillow, worrying about her burning the house down. But no, she remembers what I taught her about the safe number of seconds for cooking and is spot on every time.

She puts on her uniform for school. Her socks and shoes. Brushes her hair. Watches her funny shows and laughs. I hear her singing her school friends names over and over in the strange circular loop she so often performs.

Sometimes she visits me, signing into my hand, “Time, time”. It’s a question for me: what time are you getting up, Mummy? I sign twenty or ten (minutes). Whatever will buy me more time to SLEEP.

Listening to these morning sounds, the industry of my resourceful daughter starting her day, I lie in my bed and I smile instead of frowning and thinking about an animated ventriloquist’s doll out to strangle me in the night.

The night. It is dark and full of terrors, for little people and big ones besides. But the day breathes new life into things and it brings hope. We start again with the chime of that microwave as Amelia makes her own breakfast. We are awake together and ready to begin.

Inclusion is an illusion

IN THE wonderfully acerbic political TV series, The Thick of It, there’s an episode involving a ‘Super Schools Bill’, which proposes the closure of special needs schools across the UK. The hapless cabinet minister who must argue in favour of this integration agenda is Hugh Abbott (Chris Langham).

In this, Hugh is faced with a moral conundrum. He doesn’t agree with the Bill and his senior special advisor, Glenn Cullen (James Smith), has a son who attended a special needs school and flourished there. It’s a personal thing.

Glenn’s catchphrase to sum it all up is simple: ‘Inclusion is an illusion’.

But poor old Hugh doesn’t have the luxury of holding to a thing like principles when it comes to matters of state. Instead, he is forced by the government’s pitbull-esque director of communications, Malcolm Tucker (Peter Capaldi), to support the Bill.

In doing so, Hugh betrays his own beliefs and sells out Glenn and his son by using their personal story to argue for the closure of special needs schools. All in a day’s dirty work for the Secretary of State for Social Affairs and Citizenship.

Inclusion is an illusion. I hadn’t seen this episode for a while but I was suddenly reminded of Glenn’s line last week when I made a foolhardy call to a local activity centre to ask about my six-year-old daughter Amelia joining one of their classes.

Early in the call I volunteered the information, as I always do, that she is deaf and autistic, to be clear about her needs and advance the conversation about how best to include her.

For a minute it all sounded pretty positive. The centre had a separate class for children with ADHD/ASD with an Occupational Therapist on hand for support. Great, I thought, that might be better for Amelia than the regular classes, at least to begin with.

But I was misguided in that momentary feeling of positivity. Amelia, it turns out, would not be eligible to attend either kind of class. The doors I had hoped to open for her swiftly closed, one after another.

About her deafness, I was asked how far background noise would impact on her ability to hear. This was not so the noise could be controlled or limited in some way. It was to point out how the environment would not be ‘appropriate’ for my daughter.

I hurriedly explained that while Amelia is deaf, she wears hearing aids, can speak quite well and follow most instructions and that I wasn’t expecting anyone to be a fluent Auslan interpreter for her. I just wanted them to know that standing near her and making sure she could see the face and hands of people speaking would help her understanding of any directions in the class.

But her deafness turned out to be a deal-breaker for this centre. They could not be convinced that it wasn’t an insurmountable barrier to Amelia’s inclusion in the program.

To me, it’s simply a fact about her that requires a little effort to understand and accommodate. After that, she’ll do the rest because she’s tough and ace and super adaptable.

I know that people don’t often encounter deafness in their day-to-day lives, but there’s an unsettling ignorance that surrounds its understanding in the broader community.

It’s unpleasant to confront this as the parent of a deaf child, but there’s a spectrum of misunderstanding that at its lower levels assumes that it is ‘too hard’ to communicate with a deaf person (so we won’t try).

At the extreme end of this spectrum reside the people who mistakenly believe that deaf people are somehow restricted in their intellectual capacity. ‘You don’t communicate the way I do, so I see you as lesser than me’. Not different, but reduced.

Then I was asked if Amelia attended a mainstream school – the children in the special needs class all do apparently. Well, no, I replied, she goes to a school for deaf children. Then I was asked a theoretical question, about how Amelia might cope in a mainstream school.

How to answer something like that when she has never been schooled in a mainstream environment? That’s when my agitation, which had been like a worrisome tickle at the back of my neck from about the four minute mark of the call, really started to ramp up.

My pulse had quickened and a slight tremble rippled across my arms, my back, like a warning on the surface of my skin.

As the call neared its conclusion, I realised that it didn’t really matter what I said to the person on the end of the line. Every answer I gave presented yet another obstacle to Amelia’s inclusion. Another reason to say ‘no’.

Instead of answering questions about how they might help, I felt as though I had inadvertently participated in a survey about all of my daughter’s faults. It made me feel sick.

This had honestly never happened to me before, so I was more than a little shocked. Most places in my experience will try and meet you and your child somewhere in the middle, somewhere fun and safe where everyone’s needs can be met.

Hamming it up at the St Martin’s Youth Arts Centre (2013)

The St Martin’s Youth Arts Centre invited me to sit down with them for an hour to learn all about Amelia and how their programs could work best to include her fully.

The Northcote Aquatic and Recreation Centre has hired an Auslan interpreter so that deaf kids like mine can access swimming lessons in the only language that’s going to cut it in the pool. They also committed to one-on-one teaching when they were informed of Amelia’s autism.

Just a few cool examples of how NOT to alienate small children and their families.

The person from this centre gave me nothing, no extension of flexibility or sensitivity, just an empty offer of ‘wait-listing’. Our case was lumped casually in the too-hard-basket, and that, as they say, was that. I hung up mid-sentence, mid-sob as the rising lump in my throat betrayed me and echoed its hurt down the line.

But I couldn’t just leave it at that. I was still shaking as I sat down to write the centre a message of ‘feedback’. I’m not interested in disclosing who they are because I just read Jon Ronson’s important book about public shaming and it’s an unedifying road that will serve no grander purpose.

I will, however, share my emails (names redacted) here because I think it’s vital to show the true cost of these negative interactions, where inclusiveness was hoped for but in reality denied to a child with special needs:

Email # 1

Hi there, I called today to see if my 6 year old daughter who is deaf and autistic could come and try some redacted classes with you. She loves to redacted and I thought it would be good for her physical and social development. I was told that she is not eligible for either redacted or the redacted because of her special needs. It is pretty devastating to have your child turned away from fun activities on the basis on her disabilities. It’s great that you have the redacted group for ASD/ADHD kids but apparently my daughter is not eligible because she goes to a special needs school for deaf children. So you cater to special needs kids, just not my kid? I find it hard to understand. Amelia has participated well in programs run by places like St Martin’s and they welcomed her with open arms. She is a lovely, bright girl who has challenges but always benefits from new learning environments. I’m really disappointed – you have no idea how awful these kinds of experiences are for parents like me. Thankfully, most places operate in the true spirit of access and equity. Thanks for taking the time to read this feedback. I hope that other kids might benefit from this, even if my daughter is not welcome at redacted. Sincerely, Melinda

I did receive a quick response, but it was pretty cold and informal, sticking hard to the company line. In summary, they understood how ‘frustrating’ it must be for parents like me, but they just couldn’t accommodate Amelia right now.

Frustrating? Like when you can’t get your car started in the morning or you miss a train? Yeah, I don’t think so. That inadequate word inflamed my anger even further, so after a few hours of grumbling around the house and chewing the inside of my mouth to shreds, I emailed them again:

Email # 2

Hi redacted,

Thanks for responding to my email. I guess I am expressing more than frustration and the reason for that, whatever your company’s capacity to deal with different needs in children, is that you wrote off the idea of Amelia joining in on the basis of very little information. I said ‘deaf’, ‘autistic’ and ‘deaf school’ and after that it didn’t really matter what that means for Amelia in practice and how far she might be able to participate with only a little bit of prompting.

You concluded that her needs were more severe than is currently accommodated within your programs, and I just can’t accept that that’s fair. I would have loved it for instance if you had suggested that I bring her in to meet someone from redacted to get a sense of her, and then decide if she needed to be waitlisted for some other kind of program. The deciding factor of Amelia being in a ‘special school’ – and I’m not sure that a deaf school fits within that category – is a strange one.

There are plenty of ASD kids who attend mainstream schools but they often need at least some in-class support to do that. Amelia goes to school without the need for any extra help at all. She works on the same curriculum as every other child in the state, the main difference is that she learns bilingually, in Auslan and in speech. To me, it makes more sense, and is far more equitable, to assess the actual needs themselves, not which school system has been chosen by parents as the most appropriate for that child for a whole range of reasons.

Obviously, I wish that you had handled my call with a bit more of an open mind and frankly, a bit less ignorance of how special needs children function inside and outside of mainstream/special schools and programs. I have never been told that Amelia’s needs, such as her deafness, make her ‘too hard’ to deal with, which is the real way of saying ‘we can’t appropriately cater to her needs’. I mentioned them to you mainly so that her instructor/s would have enough information to be sensitive to those needs in practical ways, like making sure she could see the person speaking, and so on.

You would be surprised just how resilient and adaptable a child like Amelia with her unique set of needs can actually be.

Regards, Melinda

Amelia, signing to her swimming teacher (2015)

Now I felt better, as though I’d fully advocated for Amelia even if the result was still the same. I might not always be able to knock down the walls that get in her way, but goddamn it, I will always let people know when their stupidity and heartlessness has let us down.

Soon after, I got a call from the company owner and we actually had a good chat about how to properly include someone like Amelia in their activities. It was the conversation I’d expected to have at the outset.

And this person apologised, saying those magic words, ‘I’m sorry that you had such an upsetting experience’. It didn’t dissolve my afternoon of distress, but I did appreciate it.

By this stage though, I wasn’t looking to convince them to let Amelia join in – I don’t want her anywhere near a place that takes such an appalling view of her needs – but I did want the owner to understand what might have worked better in our case. How they might handle future Amelias.

Like, if they had just invited us to come in for a short meeting, we could have had an open and honest discussion about the best kind of class for Amelia. They could have met her rather than judging her abilities over the phone.

Maybe we would have decided mutually to come again at a later time, but really, we’re not solving world peace here, are we? We’re just talking about letting a little girl try something on for size to see if it might have fit.

Instead, they closed their minds to her sight unseen, which is a great shame. Because Amelia’s such a fabulously fun chick, so interesting and full of whimsy. Some people regard her as an asset to their groups, even a leader. This centre will never know her and it’s one hundred percent their loss.

Barriers to access are real and they do hurt. Take note people running programs for kids: pump up your heart valves and have a think about how your special needs policies impact on people who are already doing it pretty hard.

We’re all a part of the same community and when we feel brave enough to step out of our houses to have a go at something new, please hold our hands instead of turning us away.

Inclusion doesn’t have to be an illusion, and you might find that instead of a child being ‘too hard’, they will teach you something priceless about what it means to be alive.

Channelling Casablanca

Amelia & E: the beginning of a beautiful friendship

I took this photo the other day as Amelia and her younger companion ‘E’ left another session of their social skills group for kids with ASD. They skipped ahead and gripped hands as we made our way to our cars and the remains of the day.

Behind them, E’s Mum and I wrenched our phones hastily from respective pockets to try and capture the moment in time, freeze it in space and hold it fast in our memories.

‘Did you get it? I think I did, I think I got a good one’. You bet I did.

I hadn’t realised that our little ones might think of each other as ‘friends’; it seems like such a foreign concept to apply to children who often find the ins and outs of socialising as remote and mysterious as the moon.

But there are lovely hints of attachment occurring between them; small seedlings of care and thought peeping up from below ground, searching for light and air.

Like when we arrived at the session, I saw E’s Mum holding a Peppa Pig toy in her hand and I said, ‘Oh, is that E’s toy? How cute’.

‘Yes’, she replied, ‘He brought especially it to show Amelia’. Her words and his sweet gesture made me smile, inside and out.

And though Amelia did not pay due homage to Peppa, chosen with only her in mind, she was genuinely excited to see E and content to linger over the fading moments of the afternoon carefully holding his hand.

Walking behind them in happy silence, I laced my own fingers inside my husband’s, our connection an echo of the intertwined children up ahead.

As usual my mind wandered to the movies, the scene reminiscent of Rick and Louis at the end of Casablanca. I found myself thinking, ‘If those two can begin a beautiful friendship, then why not Amelia and E?’

Why ever not?

L’amour actually

Happiness incarnate (first day of school, 2014)

MY FIVE-year-old Amelia loves school the way that Pepé Le Pew had a case of deep, un-PC l’amour for Penelope Pussycat in the old Looney Tunes cartoons.

It’s a profound, single-minded passion, and like Pepé, Amelia will brook no barriers (in his case, not even a wrongly identified species) between herself and her love for a paramour called Primary School.

Even on mornings when she has spent an entire vomit-punctuated night on the tiles with her weary head draped over a bucket, Amelia will fight hard for her right to go to school.

As soon as I start to say that we might have to pull the pin on the day’s play, she fixes me with a look of desperation, somewhere between sorrow and defiance, and cries, “No Mum! I WANT TO GO TO SCHOOL!’

I have to sneak into the kitchen and quietly call the office to report her impending absence, all the while aware that my school-obsessed child is in her room struggling manfully into her uniform between bouts of wretching, coughing and sneezing.

I don’t know whether to laugh or cry, which just about sums up my experience of parenting such a wild, enigmatic girl.

Eventually Amelia accepts her lot and melds into the couch as she must, but not before many tears have been shed over her tragic separation from the place that gives her so much happiness, so much purpose. So much confidence.

On its own, it’s not such a terrible problem to have, is it? A child who will get ready for school in the blink of an eye and stand at attention by the door waiting for her bus ride, a full 15 minutes before it is due to arrive.

A child who will rush with you from a morning appointment, never tarrying, to make sure she makes it to school before the end of ‘brain gym’ or to the start of music, dance or Auslan; just a few of the classes that have so inspired her mind this year.

But there is one big drawback to all this school time ardour that has the potential to make life very tricky for me.

Equal to Amelia’s adoration of school is her infinite regard for routine. Clearly these loves go hand-in-hand with each other, as school is the central experience in her life that is founded on a strict timetable and the all important ‘knowing what comes next’.

There’s nothing that freaks my ASD child out more than not knowing what is coming next. In the next minute, next hour, week, or month.

We spend our lives trying to quell Amelia’s anxieties through repeated information about timeframes, plans and some form of schedule, but life beyond school is never as predictable as she would like.

Let me tell you, it is downright exhausting to live with someone who never stops asking, ‘and then what? And then what? AND THEN WHAT?!’

So, imagine you are the parent of this rigid, school-loving little person and you realise you have to INTERRUPT THE MONDAY ROUTINE HALF WAY THROUGH SCHOOL TO GO TO AN OCCUPATIONAL THERAPY APPOINTMENT EVERY TWO WEEKS.

Sorry to shout, but only caps would do to express my fear of interrupting Amelia’s weekly routine – of getting between her and her beloved school – and living to tell the tale.

Amelia has grown used to going to speech therapy sessions and other medical check-ups in the morning and then heading on to school. She doesn’t love it, but she’ll tolerate the anomaly. It has a sequential flow she can understand. Plus the end destination is school.

This new arrangement was going to involve me attending school on a Monday for our regular on-site speech session with the lovely CN, and then altering the usual pattern of things by taking Amelia to see her OT. By the end there’d be little time to go back to school so it would make sense to go straight home.

‘Maybe it’ll be ok…?’, I thought with fake optimism.

But a full week before the first appointment, Amelia turned to me out of the blue and declared, ‘No OT on Monday, Mum. I don’t like it. We do speech then I stay at school. Go home on the bus’.

She could not have been clearer about her feelings. I didn’t say too much in case I upset her even more, but I had a familiar sinking feeling about how day one of this change in routine was going to pan out.

On the morning of the new Monday world order, all was going well until speech wrapped up and I turned to Amelia and said, ‘OK, it’s time to go and see your OT now, Meels’. Yeah, right.

It was like she’d been fired out of a cannon, such was Amelia’s sudden and violent desire to escape me and the dreaded idea of leaving school that day. Sling-shot like, she flung her body out of the room and into the school foyer, screaming loud protestations as she went.

I chased after her and CN was hot on my heels. Amelia had sprinted through the foyer and was close to the hallway that led back to her beloved classroom. I did my best to stop her without being overly physical but she was already yelling the school down.

She was NOT going to go gently into that good car park with me, no matter how much I cajoled her or made rash promises of coinage, chocolate cake or park visits on the way home.

Last year, without the insight into the ASD behaviours that drive my child’s engine, I might have tried to drag her with me, force the issue, make her do what I wanted until we collapsed in a tear-soaked heap in one of the many public spaces across Melbourne to witness our mutual humiliation.

Now, I am much quicker to accept a situation like this on its immediate merits, and back off if backing off is required. I looked at Amelia’s stricken face, her sweaty brow, heard the panic in her screams and summed it all up in a matter of seconds.

Turning to CN, who was a supportive presence by my side (sometimes you want people to flee the scene of a meltdown and leave you, this was not one of those days), I shrugged and said, ‘It’s not going to happen today, is it?’ She could only agree.

The brilliant simplicity of a visual schedule

And though my plans had failed for the moment, CN chimed in straight away with an idea that was brilliant in its simplicity. She would create a tailor-made visual schedule (see picture) to use on the Mondays when Amelia was due to see her OT.

CN would create one for us to use at home with cards depicting images or photos of things like, ‘bus’, ‘school’, ‘speech session’, ‘OT appointment’, and so on. She would also keep an identical copy at school and spend time during the week talking it over with Amelia.

Amelia’s amazing teacher, PR, was also involved in the planning and offered to discuss the Monday routine with her in class and normalise it as far as possible.

My contribution was to offer to take Amelia back to school after the OT session, even if it was for just an hour, so that she could finish out the day and come home on the bus, restoring some kind of lost balance to her schedule.

It sounds pretty straightforward, but as soon as these strategies were put in place we saw an immediate improvement. With greater visual explanations of what was happening and some time to process the change, Amelia was far more open to leaving the school with me the next time around.

We finished speech, went along to see her OT for a cooperative and happy session and made it back to school for the last activity of the day. The drop off was a bit fraught, but Rome wasn’t built in a day and changes to Amelia’s routine were not going to be solved overnight.

The next fortnight ticked over and I arrived at Amelia’s class to collect her for speech. Her teacher pulled her in close and re-explained what would be happening next.

She suggested that this time when I brought her back to school, Amelia might like to walk back from the front office to class by herself, like a big girl. Like she does in the mornings with the class roll. Amelia nodded in silent but relaxed agreement.

Every two weeks, CN, PR and I were like a crack squad, making tiny but crucial refinements to ‘Plan: Get Amelia to the OT and Back’ and our efforts were paying off. I can’t thank them enough for their intuition, care and support.

When I at last took Amelia back to school, she skipped inside without stress or fear. I gave her a soft hug and said, ‘OK chicken, it’s time for you to go back to class now. All by yourself, like a big girl’.

She smiled at me and the expression stretched wide across her countenance like the brightest rainbow in the sky. It held all the colours of acceptance and shades of sincere thanks for delivering her back into the warm bosom of school.

Because Amelia loves that place like I love Marlon Brando and potato chips, or indeed like Marlon himself loved potato chips; truly, madly and without regret.

The ice girl cometh

Warrior girl with water weapon

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

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

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

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

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

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

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

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

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

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

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

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

Spot

the

difference

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

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

Embracing the challenge of cold, cold water

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

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

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

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

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

Finally, a father (2009)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A rare football victory in the early days.

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

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

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

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

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

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

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

Discovering happiness on the hills of Melbourne.

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

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

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

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

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

For T, with love.