Soil searching

Up the garden path

Up the garden path, with rose petals

I have something shocking to report.

Something disturbing has happened to me in the wash-up of recent traumatic events.

I never thought this would happen to me as we put the pieces of our little family back together and started to breathe again.

Okay, here goes. I have become … an avid gardener. You heard.

I’m the newest green thumb on the suburban block. A woman with soil permanently wedged beneath her previously manicured fingernails and dirt marks smudged proudly on a rouged cheek.

Marks from the earth are my new war paint. I am obsessed and there is no stopping me now I have started.

There is still no cessation of the intense energy (mania) that drives me from morning to night, but you can’t have everything. And, after all, how much pruning could I achieve without such boundless energy?

The garden has never looked so luscious and cared for in the ten years I have nurtured and neglected it in equal measure.

It started with small steps out in the backyard. My husband was in hospital and after my daughter Amelia went to sleep at night, I’d find myself sitting on the cool ground outside, tearing out weeds and overgrown tendrils of grass.

My hands needed to work so that my rattled mind could stop churning, even as the daylight faded and I could no longer see the garage for the trees. So work is what I did, for days and nights on end.

My partner in garden crime

My little partner in garden crime

I rejected gloves outright, preferring to connect with the often harsh textures of the garden. I endured deep cuts, broken nails, rose thorn splinters, and the pitter-patter of arachnid legs down my arm (eek).

The abrasions on my body at the end of the day satisfied me somehow. They were a positive sign of the exertions that were holding me together.

From weeds, I turned to the wild native shrubs that had suffered from months of inattention. They were locked in a permanently coiled dance, branch arm in tortured arm, plant figures robbed of distinct identities.

I took up my gardening shears and hacked and slashed at these shapeless masses with violent zeal. Sweat ran down my back from the effort, from the sun beating down on my pale skin. But I didn’t feel anything. I was too busy to care.

Inside the frenzy of my activity there was always method, always control. A sense of creating something new with my bare hands and sharp steel. Of taming and cultivating. Surviving.

I was an amateur gardener but I felt like an artist. I stood back to survey the landscape; feral forms had been transformed into shapely bushes with breathing space to call their own.

One willowy tree, previously choked by an untamed knot of green mess, was now free to stand tall and swing high in the breeze.

At night I would stand at the back window and press my hands to the glass, looking out at the garden. My garden. I was changing it for the better; my influence was everywhere.

In the newly planted pots of blooming flowers in pink and blue. Or the water trickling down the path post an evening soaking session for my thirsty friends.

In the dark hours of wakefulness over the next few weeks I would imagine new garden beds. And then in the morning I would set about bringing them to life.

Hanging terrariums dotted with shells collected from some forgotten beach. Plans to convert an arid corner of our property into a secret succulent garden. The movement created by long-limbed plants covered in bright blooms, tucked beneath our Crepe Myrtle tree.

Once the garden had taken root in my imagination, I couldn’t let it go.

Amelia joined me on my intense botanical mission. She lovingly tended to her own little patch of green things; her strawberry plant, the flowers, the tomatoes, mint, kale and parsley (she is a child of Melbourne’s hip northern suburbs after all).

Blooming for the first time

Blooming for the first time

And all of this watched over by a cheeky little garden gnome and a solemn statue of a girl who used to care for my Nan’s own garden before she died.

Our afternoons of toil would usually end the same way – with us covered in mud and Amelia stripping off her clothes to play under the delicious cold spray from the hose.

We grew things, re-shaped them and made them come alive again. One native shrub received some much-needed pruning and water treatment. Weeks later I spotted glorious, bright pink flowers appear on its spiky branches.

In all the years since it was planted, I have never seen those flowers before. It made me so happy to see them, such a generous response to the love I had finally given it.

And though our world isn’t spinning so fast anymore, life is returning to something approaching normal, I feel forever changed by the experience.

I need to be in the garden now, not just to distract myself from pain or worry. It’s a part of me; I’ve poured my soul into it and so we are bound together.

At night, I am uneasy if I haven’t at least dug my hands briefly into the soil or splashed some water over the beds, tucking my plants in for the night.

I step out onto the porch and take my time to look out across the garden towards our worn-out picket fence.

I soak up the warm night air and gaze happily at recent nursery additions now flourishing, and frown over a young plant failing to thrive.

Tomorrow I will endeavour to restore it to good health and hope to find some peace for myself. Just for a little while.

For VR who shares my love of gardening and is a kindred spirit in more ways than one.

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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.

Remembrance of things past

Wonderful childhood days (Malaya, 1956; Dad at far left, his father at centre)

Wonderful childhood days (Malaya, 1956; Dad at far left, his father at centre)

A FEW months ago I was in the car with my parents when my Dad started telling me a story from his adolescence that I hadn’t heard before.

I thought I knew all of his stories, but that day I discovered there are some tales not so easily told, even some 50 years after they happened.

Even my Mum, who’s known him her whole life, had only learned about it the year before.

If you flew a helicopter over the landscape of my Dad’s teenage years, it would look a bit like a war zone in the aftermath of a most terrible battle.

Smoke rising from shattered structures once recognisable as buildings. Emptiness. Despair.

He grew up in a corner terrace house facing Windy Hill in Essendon, with his loving grandparents, parents and two siblings. By the time he was 14 years old, nearly everybody was gone. Dead, dying, disappeared, lost.

The disintegration of his family unit was startlingly rapid, most of it vanishing quickly in the space of only two years.

By the summer of 1965, my Dad and his younger brother were alone in that big terrace house once filled with the sounds of familiar voices and adult footsteps on the stairs.

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Dad surrounded by his grandparents and father (1951)

Within a few weeks they would be turned out of this home, but for a short time it was still theirs. An anchor to a simple family life already past, never to return.

Around this time, my Dad remembers a family friend would visit most days, drink beer and chat to him. He was an Army man like my grandfather and Dad began to regard this man as a father figure in the absence of all others who might fit the bill.

Dad told me that his family had a dog then who had become pregnant and had given birth to three tiny pups.

My Dad has a tough exterior but he’s actually a massive softy when it comes to animals. I’ve seen him hand-feeding magpies and worrying over the welfare of their young.

He watched over his little canine family too, taking special care of them. I can see him now, his sweet face hovering over their sleeping spot out the back of the house. He would have treasured them and wanted to make sure they were alright.

But they weren’t going to be alright. Not in this story, pulled from the wreckage of his teenage years. I couldn’t see his face as he told it but there was something in the tone of his voice that made me sit up straight.

I leaned in despite myself. I didn’t want to hear anymore but it wasn’t for me to stop him in the telling.

The family friend was visiting late one night. He went out to use the outdoor loo and came back with a story of his own.

He’d killed the pups, he told my Dad roughly. With the back of an axe. They had distemper, he said.

I’d known something bad was coming but hearing the worst thing is different to merely imagining it. Hearing makes it real and you can’t wash it away no matter how hard you might wish it.

My beautiful grandparents (1949, the year they were married)

My beautiful grandparents (1949, the year they were married)

My Dad can still remember reeling in shock and horror as he took in this news. That this man who he’d begun to trust and rely on should commit such an act of senseless violence was shattering.

He didn’t think that his pups were sick at all. Killing them was about something else. Something darker inside the man’s mind.

Looking back, Dad can see that during this period he was trying in small ways to survive the things that were happening to him. Going to school. Playing footy and cricket. Tending to the newborn animals.

But stripped of the protective forces of his family, he was as vulnerable to the impact of an axe-blow as those poor, defenseless pups. Who could he tell anyway? There was no one left to listen.

And we can’t ask the man why he did it, no matter how often my Dad has tried to understand; the dead take their secrets to the grave with them. Let them stay there.

Not for the first time, I wanted to reach across time and rescue that lonely, young boy. Take all of his pain away. I can’t fathom it, what his life must have been like then.

I wish that I’d been there to protect him, to help him somehow. But the past is the past and Dad knows and accepts that better than anyone.

Dad in 1961.

Dad in 1961

I’ve asked him so many times why he isn’t more sad or angry about this time and he shrugs enigmatically as though the movement could cast off all the hurt he experienced as a boy.

I project my own pain for the boy he was onto the man he is today. But it’s not my story to shape, I’m just passing it on with his blessing.

My Dad is passionate about family history now, collecting and cataloguing hundreds of wonderful ‘lost’ images for all the family to see. They’re a joy to him and a gift to us, so we can remember his people as they were and connect with his life before and after the reckoning of 1963-65.

It’s a more recent project for him, starting only in the last few years. I think he uses the pictures to reconstruct the life he once had and make it whole again.

The happy times, when all of the people he loved were still together and he could just be a boy who loved aeroplanes and playing sport and had his beautiful family wrapped around him, holding him tight.

* For my brave, wonderful Dad, thank you for trusting me to write about your life. I love you.

Desperately seeking ‘s’

HERE are Amelia and P, her wonderful speech pathologist, searching for that elusive ‘s’ sound. The mechanics of just one little sound like an ‘s’ can take years for a deaf child like Amelia to learn and master. It’s too soft, too secretive, for her ears to pick up clearly so she needs a lot of support to work it out.

I sit and watch while they practice making repetitive, sibilant, snake sounds. P elongates the consonant, drawing it out in a long, slow hiss at the start or end of a word. Or just by itself. Everything has to be emphasised so that Amelia can identify the sound and start to join the dots on how our mouth, breath and tongue collaborate to form a simple ‘s’.

So they sit together on a Tuesday morning and they hiss, and laugh and hold each others hands to feel the breath, the noise, made by each other’s mouths.They are gorgeous to witness, because there’s so much affection sitting alongside the toil.

Amelia’s ‘s’ is thinner, more tentative than P’s. She’s still not sure of herself and when P adds in tricky little vowel combinations, sometimes the ‘s’ disappears, falling away for a moment. But they’ll pick it up again next Tuesday when they meet.

And Amelia will retain a little bit more each time until one day, maybe this year, Amelia will unlock the secret of that slippery little ‘s’.

 

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.

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.

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

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.

In safe hands we trust

"Never trust anyone", says "Popeye" Doyle. Amelia would not disagree.

“Never trust anyone”, says “Popeye” Doyle. Amelia would not disagree.

A few months ago, my four year old Amelia fell over at kindergarten and hurt herself pretty badly.

It appears that she had been playing on a boat-like structure in the playground and tumbled somehow, her face taking the brunt of the collision with whatever hard surface met her fall.

No-one’s really sure, because the fall itself wasn’t witnessed by her carers.

Amelia was found sitting quietly to the side of the play area with her hands covering her face. She wasn’t crying. She wasn’t making a sound.

The first adult to approach her saw a dark red substance pooling under her hands and onto the bridge of her nose. “Amelia, have you got paint on your face?” No, turns out it was blood and a fair bit of it too.

In vain, her lovely carers tried to offer her help, to clean her wound, to see if she had broken her nose, to apply a cold compress – to help their little charge. But Amelia wasn’t having a bar of it.

By the time I reached the centre, she was clutching a dirty, blood-stained tissue to her face and would not remove it. On seeing me, I watched her face change a little, registering some kind of release. Her lips quivered and her eyes filled with tears.

Amelia was obviously relieved to be taken into my care and the momentary warmth of my embrace, but she never lost control. She held onto herself and the pain and let me take her home.

I’ve wondered a lot about this incident since. It’s not that my daughter doesn’t feel pain, not at all. But the cost of showing that she is hurt is that people will come at her with their unwelcome hands and heightened emotions.

So, Amelia would prefer to sit quietly and take the pain than risk the unwanted attention of pesky Good Samaritans.  Imagine the self-possession of someone like that. The will that it takes not to cry despite great pain at four years of age.

It makes me worry for her, because as much as I want to respect her limits – those defensive walls she needs to erect between herself and the world – everyone needs a little nurturing some of the time. Noses need to be checked for breaks and blood has to be washed clean.

But how do we make Amelia feel safe enough to let us parent her? How can we help her to soften her tough-guy “Popeye” Doyle exterior enough to be comforted?

Amelia leaping into a brave new world and the safe arms of her OT.

Amelia leaping into a brave new world and the safe arms of her OT.

I was at a bit of a loss with all of this until September this year when we started working with our Occupational Therapist, MM. Her intuitive, hands-on treatment program has created some space for Amelia to let her guard down a touch and open herself to new guiding hands.

For a child like mine with Autism Spectrum Disorder, Occupational Therapy (OT) sessions serve multiple functions. They are designed to be open and flexible so that she doesn’t feel overwhelmed or pressured.

Through this loose structure, MM is building trust, but there are rules too. If we start a new game or activity, the old one has to be cleaned up and packed away.

If Amelia kicks up a fuss about having to conform to these rules, we do not bend or back away. We just wait until she is calm enough to play again.

The effect is to create a safe environment where Amelia feels a degree of control and a lot security at the same time as her social skills are being tested and developed.

She is being taught how to wait, how to negotiate, how to live in a world governed by rules and the needs of others.

Gradually, I have watched my tough, inflexible girl change from someone who was frequently intolerant of the (not unreasonable) demands MM places upon her in each session, to a mostly willing and enthusiastic participant.

Amelia is beginning to shed a layer of deeply engrained fear and anxiety and is more ready to be guided, touched and taught than ever before.

Some appointments are held entirely in a brilliant sensory room filled with cushions, mats, swings and slides. In this room, we are testing the types of activities and sensations that work best to calm Amelia down, regulate her often haywire senses and give her lots of stimulation without triggering meltdowns.

There’s a large swing in the centre of this space that requires a lot of balance to stand or lie on it. At first, Amelia was reluctant to try it. But very quickly she became keen to jump on board, with me as her initial passenger.Then she graduated to swinging solo, knowing that if she fell there were mats underneath to break her fall.

In essence, that’s what these sessions are all about: providing a safe platform for risk-taking and bravery. For going beyond the limits of Amelia’s slowly expanding comfort zone.

These days she is like a Cirque du Solei trapéziste in training while looking unquestioningly to her coach, MM, for encouragement. Lying on her stomach, Amelia is encouraged to pull herself forward holding ropes or MM’s hands, locking eyes with her in total trust.

I will never tire of seeing her face like that – so alive with the happiness of letting herself go, of flying without fear when there is a safety net ready to catch her no matter how high or fast she might go.

The swing involves tough core work, the kind that would challenge the most avid gym junkie, and it is teaching Amelia to push herself beyond the point of frustration to greater strength and confidence. She is now more aware of her body and what it can do. And it can do so much.

There are of course rewards for this level of commitment. The other day, after the tiring physical activity of the session was complete, MM invited Amelia to lie on the floor as the ‘meat’ in a cushioned ‘hamburger’. One thick mat was placed on the floor and without hesitation my girl lay face down on it, waiting excitedly for the next fun thing.

It was relaxing just to watch Amelia in still repose.

It was relaxing just to watch Amelia in still repose.

The therapist then grabbed a second mat and pressed it onto Amelia’s back, applying deep pressure to her small body.

After the exertion of the physical work, this pressure clearly had an instant soothing effect, bringing her sensory levels down to a calm place where balance was restored.

Then, MM took a small Swiss ball and moved it over Amelia’s body in circular motions, applying more pressure to her prone figure. I have never seen her so still, so content. So relaxed.

Her eyes rolled back in her head and she closed them for a time, simply enjoying the bliss of the deep massage.

In this pose I could see her register, perhaps for the first time, that touch does not have to be feared or rejected and it can offer so much more than mere hands or bodies making incidental contact.

In her OT sessions, Amelia is stretching herself to new physical heights and we are all learning how long it takes to exhaust the seemingly boundless energy that burns inside her. Her social skills are improving and she is beginning to appreciate the benefits of contact tailored to suit her needs.

I am discovering that there are many more ways to reach my daughter than I ever thought possible. MM has helped me to understand and accept that when Amelia hurts herself or is in need of comfort, it is not a rejection of me if she cannot tolerate my arms around her for more than a second.

She may never let me hold her the way I still long to but Amelia does need the security of contact and care, just not in the way most people expect of a child.

So, I will be more than happy to let the cushions, mats and balls we have acquired for our home therapy program be an extension of my mother’s arms – reaching out to be close to her, offering protection, relief and all the love I can give.