My fourteen-year-old son, Alex, is too far ahead of me, pedalling furiously. I’m getting over the flu, one of those nasty strains that leeches all the energy from you, and my body just won’t respond. It’s New Year’s Eve, 2015, around 6.30 in the evening. We’re halfway along the bike path that links Parramatta to Meadowbank. We’ve been cycling for fifteen minutes or so, and there’s no one around. To my left, a grassy slope rises to touch the sky: the line where they meet looks like the curve of planet earth. To my right, the slope gives way to the Parramatta River, which is hidden by the trees and bushes that edge the river bank. I can picture it, threshing blue grey in the sun that sets behind us. A hush has fallen over Sydney, the lull before the night of revelry ahead.
My son goes faster and faster, the distance between us increasing at an alarming rate. He’s tall and slim and his legs are strong: he’s custom-built for speed. ‘Slow down!’ I try to shout, but it comes out as a croak. He’s too far away to hear me anyway. He pedals with manic energy, an energy that has slowly been taking hold of him since he hit puberty, and that is once again transforming him beyond recognition. With every passing day, he’s becoming more remote. With every passing day, he uses less of his already limited language. He’s constantly jittery, on edge, ready to tip into bouts of distress and agitation that seem to have no object, no purpose, other than to alleviate some inner pain that can seize him at any moment. Sometimes, for no apparent reason, he will suddenly stop cycling, leap off his bike, fling it on to the path and himself next to it, and thrash about on the ground, making loud, anguished noises. Despite my attempts to soothe him, it can take up to half an hour for him to calm down completely. After a decade of intensive therapy, of countless interventions — behaviour specialists, speech therapists, occupational therapists — his autism seems to be entering a new, unsettling phase.
The distance between us gets wider and wider. I try to push, but my legs won’t respond. It’s hot, around 30 degrees, and usually I don’t mind — offset by the breeze and movement of riding it can be a benevolent warmth — but today it feels anything but: the warm air drags at my every attempt to go faster. Up ahead, Alex pushes through it effortlessly, through the golden, dazzling afternoon. The freshly mown grass and the leaves of the trees are soaked in the sun that strikes from down low, nearly horizontal, and casts long, crisp shadows. Alex seems to be plugged into this energy field glowing all around him. He’s crouched down on his bike, his elbows pointing outward like wings. He teeters from side to side, somehow managing to rock vigorously back and forth on his seat as he propels himself forward.
I need to him to slow down, now. Up ahead is a copse of trees where the path divides. To the left, it goes onto bitumen road and through the maze of riverside suburbs. To the right, it goes through the mangroves. If he goes onto the road, he can get hit by cars. If he goes into the mangroves, along the raised narrow path that twists and turns over the muddy banks, he could fall at speed and seriously injure himself, or others.
I shout out again, another useless, pathetic croak. He’s a tiny figure now, pedalling faster and faster. There’s a pounding in my chest, my mouth is completely dry. In my mind, I beg him: Alex, Alex, please, will … you … just … slow … down!
He disappears into the trees.
For the first time in my life, I’ve lost him.
A shock of panic goes through me and suddenly I’m pedalling as if my life depended on it. At the same time, my thoughts explode in countless directions. Should I call his mother? No, I’ll look first. Should I call the police? No, I’ll look first. Which way will he go? I don’t have a clue. I think, it’s completely deserted. There is no one to ask if they’ve seen him. I start reproaching myself. How could you be so stupid? You’ve got the flu, you feel completely clapped out, you’ve taken your strapping, six-foot, severely disabled son into a completely deserted place where you can easily lose him, and now you want to call the police? There will be no police, it’s New Year’s Eve, for God’s sake! They’ll all be deployed across the city preparing to stop people who are pissed out of their minds from doing each other all kinds of harm and you, dingbat dad, want a search party that will only arrive when it’s dark to look for someone who won’t understand that they’re lost, who can’t reliably say their own name, who will do just about anything anyone asks, who is completely dependent on you, who trusts you so much he doesn’t even know he trusts you …
I reach the divide in the path and come to a dead stop. All my life, I’ve had the uncanny knack of choosing the wrong way. No matter which way I go, it will be wrong.
I decide to ring Kathy. As the phone rings, I feel overwhelmed with shame. Now I’m the incompetent father who must answer to that ultimate authority, the mother, not that Kathy would make this kind of judgement: it’s me who’s doing the judging. My head is pounding. I tell myself to be calm. For no reason I can think of, I remember a radio interview with a navy seal I’d recently heard. In it, the navy seal tells his tales of cool, calm resolve in the face of adversity. You’re that navy seal, you tell yourself. You will calmly assess the situation, come up with plan A, B and C, then carry them out with the minimum of fuss and effort. Emotion will not come into the equation.
Kathy answers. ‘What’s up?’ she asks. She sounds happy. Happy to have some time to herself after having looked after Alex for days now: carers are thin on the ground over the Christmas break, and I’ve been flat on my back for much of the time. I try to answer, but I can’t get the words out, my mouth is too dry. I grab my water bottle, take a swig. The water goes down the wrong way: I’m spluttering, coughing, hacking up green stuff from my chest. I will remain calm, I tell myself. I will remain calm, discuss with Kathy what’s to be done, and all will be well.
‘What’s wrong?’ she asks, this time a little concerned.
It’s the word ‘wrong’ that pushes me over the edge.
I lose it and start shouting into the phone. ‘I’ve lost him,’ I shout in utter abjection, ‘I’ve lost him!’ The full weight of the last twelve years come crashing down on me. The relentless, gruelling slog of caring for him, raising money to pay for his therapy, paying for his carers, fixing the things he unintentionally breaks, the chairs, the headphones, the portable DVD players. The humiliation of the begging, the endless begging for scraps of government funding from the alphabet soup of organisations I forget from one day to the next. For a moment, it feels blissful to let go of all the Pollyanna attempts to look for the upside, to let everything crumble beneath me, to fall …
The navy seal floats up into the sky, up past the deep green trees that shade the fork in path, up over the meadows where rabbits graze, up over the Parramatta River with its rocky banks, its ferries, its rowers, its wheeling birdlife. The navy seal looks down, not unkindly, at this man on the wrong side of fifty, shouting into his phone, drowning in useless self-reproach.
Kathy keeps calm, and does her best to reassure me. ‘Try his nearest water spot,’ she tells me.
That will be the jetty at Melrose Park, a five-minute ride through the mangroves.
By the time I get there I’m dripping with sweat. There he is. He’s standing at the end of the concrete ramp that slopes down into the water, ankle deep in the Parramatta River. On either side of him, barely a couple of metres away, are large, gleaming SUVs, their trailers backed into the water, partially submerged. Some men are wrangling their motor boats onto the trailers. As they haul in their boats, they glance incredulously at Alex standing right between them. Alex kneels, cups some river water in his hand, and flings it up into the air above him. He watches the water rise up into the air, watches the liquid crystal shape bend and twist then disperse into countless shining droplets. Then he kneels down and does it all over again. He ignores the boats bobbing around him. He looks serene, calm, utterly absorbed in his task. The men wrangle their boats, cast their now bemused glances at each other, at this teenage boy’s strange, inexplicable ritual. I stand there, my heart rate starting to fall. I don’t trust myself to open my mouth yet: I’m too upset. And if Alex sees that I’m upset with him, he could get distressed and go into an instant meltdown. And if he thrashes on this pebbly concrete, he’ll scratch himself up, and badly. Besides, it’s too late to admonish him. For any reprimand to be meaningful, it has to be done at the time of the behaviour. It was now unlikely he would make any connection between my upset and how he has caused it.
I get off my bike, walk down to him. The men, boats secured, are now ready to leave. They glance at me. And their glances say, so, must be the dad. Where’s he been? Oh well, he’s here now. Pretty clear his kid isn’t normal. Who are we to judge?
‘Alex,’ I say, ‘time to go.’
Alex looks up, gives me a look of mild protest. He goes to kneel again, to scoop up another handful of his beloved water. ‘No, Alex,’ I firmly tell him. ‘Time to go home.’
He breaks out into a huge smile, his gaze glancing off mine as his attention is caught by a seagull swooping overhead.
When Alex was diagnosed he was a toddler, just two and half years old. His diagnosis – the result of a series of tests conducted over an afternoon – had three parts to it. Severe autism. Severe intellectual disability. Severe language dyspraxia. Over the following months, a range of specialist all told us the same thing. We were to prepare ourselves. Our son would never live independently, would need 24-hour supervision and care. As he had shown some speech capacity, with the assistance of therapy he may one day be able to talk, but any gains were likely to be limited, and we shouldn’t get our hopes up. And when he was diagnosed, I made the decision that I would be there for him, that I would be physically there for him, as much as I could, every day as long as I lived. This is, of course, what the majority of parents do for their children: there is nothing particularly virtuous about such a commitment. But the intensity of Alex’s needs went well beyond any standard expectation of what parenting would be. As the long-term implications of his condition became clear, it was obvious that his mother and I would have to restructure our lives, permanently, to make him the primary focus. This is not to say we didn’t have the love and support of other family members: we did, and for this we were grateful. But the overwhelming responsibility for his care fell to his mother and me. And we accepted this responsibility, Kathy with a level of commitment that humbled me. We took up the challenge, even if we didn’t fully understand what it was. There was no way we could. It was beyond anything either of us had ever experienced.
When Alex was diagnosed, I was forty years old. I had things I wanted to do, to achieve. This would all come second to maintaining this presence. This was an existential limit I placed myself, a constraint on my life. Life has a great many possibilities, sometimes too many, I told myself. It’s good to have constraints, I told myself. Constraints enable as much as they limit. This constraint came as much out of a sense of responsibility as love. I had brought him into the world with the full knowledge that, as a parent, he was my responsibility. To provide him with food, shelter, love, education, social opportunities, entertainment, moral guidance, physical activity, and whatever else a human being needs to thrive. And there is so, so much a human being needs to thrive: I never realised quite how much until I was given the task to make sure, as best I could, that it happened.
There was something in me that was unsentimental about this. My sense of responsibility overrode my sense of love. It took me a while to understand the nuances of my motivations. At first I thought this was the harder path, an acceptance of the reality of parental responsibility that transcended mere feeling. But I came to realise that seeing parenthood in terms of responsibility is, in some ways, the easier option. You do the right thing according to the rules, the social norms, whatever those rules or norms may be. In order to do these right things, you plan, you organise, you tick off boxes. You are in control, and control, exercised in someone’s interest, is both reassuring and satisfying. Loving someone, however, isn’t so easy. Loving someone for your entire life, even your child, especially your child, can be one of the most difficult things you will ever do. It involves a set of feelings you have, at times, little or no control over, feelings that can pass from rage to regret in the bat of an eyelid.
And loving a child with autism? Severe autism? Loving Alex had been easier at some times than others. It was easy to love him as a sweet, compliant eight-year-old, a boy whose condition rendered him tentative, in need of constant reassurance. It was, at times, much more challenging to love this six-foot teenager, part boy, part man, who had been utterly transformed by the physical changes of puberty and adolescence, who could become remote, lost in his own world, prone to outbursts that sent him into inexplicable bouts of distress and agitation.
Then there were the purely practical aspects of being there for him to consider. This meant, at its most basic, that a neurotypical person would be spending sustained periods of time with someone with autism. This meant that I was committing myself to my son’s autism. To being-with-autism. Clearly, this wouldn’t be a one-way street. Autism would leave its imprint on me, as my neurotypicality would leave an imprint on Alex. But only an imprint: my son would never be neurotypical, whatever that meant, and it was never our desire to make him something he was not. The vast amount of money we had raised and spent on behavioural therapy was never intended to make him ‘normal’: we had no fantasies of ‘reclaiming’ him from autism, of ‘extinguishing’ autism, some of the more quixotic claims that behavioural therapy could make. No, we simply wanted to help him develop his potential, to become the best he could be, to facilitate whatever capacity for speech he might have. To help him structure a world that it appeared his senses largely scrambled. To help him survive in a world that demands you have the skills to survive, so that he wasn’t completely dependent on the kindness of others: first his parents, then, once we had passed, of strangers. For a parent, was there anything more disturbing than that? To have no choice, one day, but to relinquish your child to the kindness of strangers? And the stakes for Alex were the highest of all. What control can you have over your life if you can’t communicate?
The intensive therapies that Alex underwent no doubt improved his life, especially in the early stages, but they did not alter the fundamental nature of his condition. When he was reassessed at the age of thirteen for high school placement, the scores that measured his cognitive ability had, despite all the therapy, dropped from severe to profound. Profound? I hadn’t realised that there was a level below severe. In stunned amazement I asked the psychiatrist who had administered the test: surely his skills might still develop over time? The psychiatrist was having none of it. ‘At his age we no longer talk about developmental delay,’ she replied crisply. ‘This is pretty much it.’ I was even more amazed at how she could be so sure of herself.
Part of this being with Alex, this being-with-autism, takes the form of bike rides. He learned to ride on the blue bike we bought for his seventh birthday, his first without training wheels. It took about six months for him to get the hang of it. His mother was the main driving force: her persistence and patience in teaching him was endless. The first time I watched him ride independently was one of the happiest days of my life. It was late summer, down at the local park. He was tanned, healthy, his limbs slender and strong. At first he was somewhat cautious on the bike – his steering was a bit wobbly – but his balance was solid and there was an unmistakeable self-confidence we had never seen before. I was thrilled for him, and excited that there was something we could do together. There would be family rides, of course, but I was also looking forward to going out with him just as father as son, just like any other father and son. I couldn’t wait to get him down to a longer bike track: Sydney was full of them, and there would be so much to explore. We would ride together and all the while there would be a voice running through the back of my mind that said: look at my boy, world. See what he can do, what he can achieve. See how beautiful he is, how perfect he is, what a gift he is.
For the last seven years we’ve ridden along the Parramatta River from Rydalmere Wharf, a short drive from where we live in our 1950s brick-veneer house in Dundas, to Meadowbank Wharf. It’s around twelve kilometres there and back. The ride covers a number of areas: light industrial, suburban, stretches of parkland. There are rabbits, ducks, ibises, feral cats. There are magpies, cockatoos, rosellas, the occasional blue-tongue lizard or snake lying across the hot concrete path on summer mornings. After heavy rains the water pools in the stretches of cropped grass and the birdlife flocks in, enjoying the miniature wetlands that have formed right there in the geographical heart of Sydney.
There are sightings of individual creatures that come and go. For a few weeks in autumn, the largest black rabbit I’ve ever seen would reliably be found at a certain spot near the jetty at Melrose Park, munching up the grass. One summer I’d see an elderly man — in his mid-eighties at least — decked out in Nike shorts and singlet, using the outdoor gym equipment in one of the small riverside parks on the Ermington stretch. He’d hoist himself up and down on the simple wooden structures, copying the positions described on metal plaques etched with instructions. His skin hung from his bones, his muscles flapped loosely, but he still managed to do sit ups and pulls ups. I was in awe of him. Then, one day, just like the giant rabbit, he vanished.
I don’t know if Alex notices these things, because he can’t tell me. Alex has succeeded in developing a small repertoire of basic words, and he understands much more than he can say, but it’s a struggle for him to speak, and he prefers not to. We’ll be riding. I’ll see the rabbit. I’ll stop and say to Alex: look at that giant rabbit. It will take a while for Alex to identify it, to fit the word to the particular object I’m referring to. He’s always patient with me, with these attempts to share the moment, and gives it his best. He’ll look at the tree, at the bush, at everything but the rabbit. No, Alex, I’ll say, pointing. The rabbit. And my son’s eyes, their colour somewhere between hazel and honey brown, will come to rest for a brief indifferent moment on the rabbit, who munches contentedly, oblivious to the fuss being made over it.
I am, of course, making assumptions about what Alex should be interested in. There is no reason he should play the role in this scene I’ve scripted for him: the son who is introduced to the joys of nature by the father. But what does Alex like about our bike rides? He goes willingly enough, never protests, but also never actually asks to go. But then, there isn’t much he does ask to do. This is not for lack of our trying to find out. Over the years his mother and I, along with his teachers, therapists and speech pathologists, have done the best we can to provide him with the means to express himself: communication boards, iPads with speech-assist software, to name just two. He enjoys uses the devices and has made some gains with them. We will keep trying. But, ultimately, it will be his choice if he chooses to speak or not.
So what does he get out of our bike rides? Does he like the motion of peddling? The feeling of balancing himself? The feeling of the wind? Is it this blend of motion, sensation, repetition? Does he like the transition from the familiarity of his therapy room, where his mother teaches him, where he watches his YouTube clips on his computer, to the open yet sheltered spaces of the path? Does he like winding and weaving through the sun, the trees, the mangroves, the industrial estates and the suburban houses and their gardens filled with gardenias and succulents and sky-blue play pools? It’s highly likely that he likes all these things, because, for the most part, when he is not seized by his sudden bouts of agitation, he appears calm and contented when he does them. He is, I believe, by nature and temperament, a calm and happy person. I say believe because I never want to assume too much about him. To assume is to create my reified version of him, my projection of him. I live with autism, beside autism, but I have to accept that I don’t know exactly where I am in autism. I will never really know, because my son can’t tell me. So I must watch, listen, observe. I must try to understand, always try to understand.
I always ride behind Alex. Or I should say Alex always rides in front of me. I want him to be the one who leads. I want him to be the prow that breaks the water, the one who rides unbounded, the one who, on the hills, rises into the sky with nothing to limit him. My poor sweet boy: Glyko agori, o kaimenos mou: this is what my mother sometimes calls him — my poor sweet boy. When she says it her voice bursts with sympathy, with love, full of that very Greek, unhesitating willingness to fully enter into another’s state of being. It’s a pure, unalloyed sympathy from an older time, a time before the ascendancy of empathy, an idea that, for me at least, can easily become a kind of emotional dodge, one that masks an unwillingness to put any real skin in the game. My poor, sweet boy. He has so little agency in his life. He’s always following. Be a good boy, do this, do that. His teachers, his carers, me as well: often this is what we praise him for, but it frustrates me, this reward for making everyone’s life easy. Obedience is goodness. Follow instructions and you’ll always be safe, secure. When we ride I like that he knows that I’m behind him, always behind him, there to watch over him but also there to give him some control. But when we ride, he leads, and I follow.
I always try to keep about five metres between us so that he stays within earshot. Alex still hasn’t quite got the hang of how close he can get to others using the path, and he can take people by surprise. We’ll be riding and up ahead, strewn about the path, there’ll be a toddler, a pram, a dog, a parent or two. When you’re on the path, keep left is the rule, but little kids and dogs don’t always understand that. At this point in his development, Alex won’t reliably respond to the words left or right. I’ve had greater success with this side for left, that side for right. So, we ride, roughly five metres apart, bound by an invisible elastic string that expands and contracts, with me shouting as politely as I can when he needs to dodge someone: Alex, this side!, Alex, that side!, Alex, slow down! It took me a while to realise I had to say his name first, otherwise people thought I was addressing them. I couldn’t believe how many of them did as instructed.
The busiest stretch of path is in front of the new housing development at Ermington, a suburb right on the Parramatta River. It’s the mid-point of our ride. A mixture of Defence Force and private housing, the brand spanking new buildings form a miniature city of white low-rise apartments, cuboid, rectilinear, set amongst cropped green lawns. A low sandstone wall, also newly built, separates the lawn and the river. At regular intervals along the riverfront are sheltered picnic tables where family groups gather for lunch or dinner: piled up on the thick wooden tabletops I often notice giant two-litre bottles of soft drink towering over paper plates full of food. The riverbank is covered in blue metal, a crushed rock that, when wet from low tide, glistens dark blue in the sun. Sometimes we stop so Alex can walk along the sandstone wall: in summer, warmed by the afternoon sun, it glows a buttery yellow. Rivercats sails by, churning the water white and cobalt. The wind ruffles Alex’s hair, curly, overgrown, wild and beautiful, because in the last of couple of years he has found it hard to tolerate sitting in the barber’s chair long enough to get anything but the simplest trim. We’ve come to like his new look: Bob Dylan circa 1966, mid-seventies surfie boy, take your pick.
The new housing development fascinates me. Over the years I’ve watched it go from sparsely populated to teeming with young families, their children everywhere. In the central courtyard is a playground whose main attraction is a tall rope tower: it looks like a collapsed spider’s web. At busy times — after school, on the weekend — it’s covered with children, some driven to conquer its summit, some happy to stay in the lower reaches. Their parents mill about in groups, keeping a watchful eye over them. There’s a mix of backgrounds: European, Asian, Indian, African, Arab. Australia has been bringing in around 200,000 migrants a year, and some of them have ended up here.
For a rest, Alex and I often sit on the sandstone wall overlooking the water. One weekday afternoon we watch a tiny Asian girl in pink leggings nimbly jump over the expandable dog leash her mother has allowed to get way too long as their puppy suddenly charges to one side. The little girl lands like an Olympic gymnast and gives her startled mother a dazzling smile. And I think: this is why Australia is a magnet. This is why they come here, to live in this brochure come to life, this developer’s dream made flesh, to live somewhere clean and safe and prosperous where their families can thrive, where they can be happy.
I look at this microcosm of a world my son will never belong to, will always be at one remove from. In particular, I look at the children. When Kathy and I are gone, I think to myself, this generation of children will have grown up and, in the broader sense, become Alex’s custodians. They will decide the kind of life he will be given. I calculated that Kathy and I would be gone in 30 years or so, sometime around 2050. Alex would be around 50 years old. We would leave as much money for him as possible. One of his younger relatives, we hoped, would act as his guardian, a thought that gave us some comfort. But, ultimately, it takes a village, a society, to make sure a person leads a rewarding life, especially when they can’t fend for themselves.
What kind of life would this next generation give my son? What were they learning in school, at home, from social media, about their responsibilities to others? My son’s school – one that catered for children with intellectual disabilities – was shaped around four values: be a learner, be caring, be safe, be a friend. Two out four of these values — be caring, be a friend — directly addressed these kinds of issues. But I couldn’t help but think that, while it was important for Alex to learn such values to the degree that he was able, it was his neurotypical peers who really needed to take them on board. Out there in the ‘normal’ world, I had no doubt that in all of our schools every attempt was being made to foster these values. But can you teach compassion? Can you mandate kindness and benevolence? In a decade or so, many of the children playing in front of me would be adults, old enough to vote. What would they think my son was worth? Would such an issue show up on their radar at all? Would they have the time, or inclination, to spare a thought for the disabled? Or would they be too preoccupied fighting their own personal battles? I had no reason to think they would be any more or less compassionate than other generations, and if I had to make an educated guess, it would appear that overall, at least in affluent countries like Australia, things were slowly getting better for the disabled, not worse. What then, were my concerns? What were my fears?
That he would be neglected. Mistreated. That there would be no one to love him.
What was my son worth? Out on the bicycle path, out in the larger neurotypical world where my son was part guest, part invisible man, this thought would often cross my mind. How does a society decide who deserves resources, who doesn’t, and what level of resourcing they should get? This issue often came up in my discussions with one of my doctoral students. Part of her research was on the Wyndham Native Hospital, located in the Kimberly region of Western Australia. It was a hospital for Indigenous Australians that was established in 1937 and not shut down until the 1970s: its existence represents one of the many low points in Australian race relations. Grossly under-resourced in comparison to the local ‘white hospital’, those treated there received vastly inferior care. In her endeavours to understand how such a place could exist, my student’s thesis used the ideas of the Italian philosopher Giorgio Agamben. Central to Agamben’s thinking is the Ancient Greek distinction between zoē , the biological fact of life, and bios, the form or manner in which a life is lived. When we see people as only as zoē , as biological entities that are to be maintained in the most minimal way, they come to be thought of as what Agamben calls ‘bare life’, or life in its most rudimentary form. This is contrary to what it is to be human. Zoē should not be considered an end in itself, but the departure point for bios, the social world, the world of participation and the realisation of possibilities and potentialities. The whole point of being human is to go beyond zoē in its most meagre form of bare life and to live a rich, full existence.
How did such ideas relate to people like my son? In Alex’s case, he was being given the means to survive, and to realise his potential, and least for now. He had loving parents. His special school was reasonably well resourced, his teachers committed and caring. Through funding from the federal government’s newly introduced National Disability Insurance Scheme, it was likely he would be provided with some, if not enough, social activities and support services. But what about the future? When he was older, there would be the option of a group home, and an income in the form of the disability pension. Thus, it would appear, his basic needs would be covered. But would bios, the quality of life, the fulfilment of human potential, be really catered for? This was the great variable. Without the right resources, bios could become ‘bare life’ in the blink of an eye.
Again and again the thought came to me: human beings are such complex creatures; there are so many things they need not just to be fulfilled, but to prevent them from turning into depressed, dysfunctional lumps of misery. In a country like ours, the assumption was that, in the first instance, the individual had to take primary responsibility for their own happiness, and that it was up to each one of us to find the resources that best suited what we wanted from life. But what if you didn’t have the ability to act as the custodian of your own happiness? What if it required a small army of people to make sure someone was fulfilled? It was at this point that the state came in to offer assistance via the welfare system. But what level of resourcing was a society willing to provide for such an individual? How much was it willing to pay? Would it do what it had largely done to those who could not fend for themselves: relegate them to some shadow world that hovered somewhere between a bare life and a full life, with resources that rose and fell in accordance with changing family circumstances, and the whims of different governments, economic conditions, and community values that were in constant evolution?
And isn’t this what many of us lived in fear of? To live in a shadow world that hovered between bare life and a life of fulfilment? To fall to a level of subsistence so meagre that we couldn’t really say we were living?
Be caring. Be a friend. I’m ashamed to say that when I first saw the values of my son’s school, a small part of me found them sentimental, verging on the kitsch. I soon realised I couldn’t have been more wrong. His situation was a reminder that there were few things more important.
For some reason, always on our bike rides home (never on the first leg away from home, always coming home, always in the spirit of returning), I would fall into thinking about Alex’s future in the practical sense, the provisions that would need to be made for him on a day-to-day basis. I had committed myself to being present for him. One day, I wouldn’t. Nor would his mother. Plans had to be made.
In my head I would sketch out the document describing the form his life should take in the absence of his mother and me. As I rode, it was always a jumble of thoughts, a collage of his near and distant future as best as I could conceive it, full of hopes that I wanted to become realities, gaps and omissions that spiralled in all directions and that I could never, ever fill.
Alex, I mandated in this imaginary document, would go bike riding four times a week, swimming twice a week. He would go bushwalking twice a month, probably on weekends, in a small group. He was to have a pleasant room of reasonable size that preferably looked out onto a garden. He was to maintain his self-care routines with support. He was to have access to an outdoor water-activity station that he could use for a maximum of up to one hour a day (there would be a dedicated budget to construct such a station). He was to have a minimum of 90 minutes a day cognitive input, in the form of simple reading and writing tasks, puzzles, table games and craft activities. He was to do household tasks that were of short duration, that were not overly complex, and that had been adequately demonstrated to him. He was to have meaningful emotional input from a small, stable number of neurotypical companions, who would show him the kind of affection appropriate to his situation and who would model positive caring relationships with his peers.
In my head, I wrote codes of conduct for these carers. Alex was to be treated with kindness and patience. Patience was of particular importance. He could be frustrating, in that he never seemed to remember how to complete a task. If you guided him a step at a time, he was usually fine. But you had to modify your expectations to what he was capable of. Carers needed to know that my son had been treated with kindness, respect and patience his whole life. He knew what it was like to be admonished and scolded: occasionally Kathy and I lost patience with him, particularly when we were overtired or feeling low. However, raising your voice or shouting at him was generally pointless and had no beneficial effect: all it did was confuse him and make you ashamed of yourself once the frustration and / or anger had worn off.
Alex had been raised with the expectation that the world was a benevolent place that would support him. If he was hungry, there would be food. If he was bored or distracted, he would be entertained, or given the means to entertain himself. If he was lonely, he would be given companionship. If he seemed unhappy, efforts would be made to lift his spirits. If he was in pain or distress, he would be soothed. He was regularly hugged, kissed, had his hair tousled, and was called affectionate names such as bunny, sweetheart, darling, my sweet boy, possum, and so on. He held an absolute value in our household. This is where he belonged, unconditionally. If, by accident or design, he burned down the house, it would be rebuilt for him, even better suited to his needs. If, in a fit of meltdown, he did us physical harm, he would be forgiven and loved all the more. His meltdowns were not indicative of who he was and would in all likelihood pass with adolescence. Despite his remoteness, my son often woke in the morning with a huge smile on his face, beaming at the simple fact of being alive. His mother and I had done everything in our power to make sure this was how he lived his life, and we expected nothing less from those who took over his care.
As I rode, I would write directives for his food, his clothing, his entertainment, whatever came into my head. He was to have nutritious food he found palatable. He was not to be dressed cheaply. There was nothing wrong with some budget basics as long as they were reasonably well made, but there should also be decent stuff he looked good in when he was out in public. He had a tall, slim build, and that should be taken into consideration: nothing ill-fitting or make-do. He was to have access to a screen device (who knows what they would look like in 25 years, so best to use generic language) so he could watch his favourite movies in the evenings. There was to be an ongoing review program in place to make sure there was a regular turnover in his activities and entertainment choices: he could easily watch the same video for ten years, and that was to be discouraged, although old favourites were to be retained where appropriate. He was fond of music, and while he couldn’t operate a music player by himself, he should be regularly played songs he liked (‘The Lion Sleeps Tonight’, for example). He had recently responded well to the drawing exercises his mother did with him in therapy, and he was good at copying images of animals she sketched for him as models, for the most part birds, but alsolizards, marsupials, and other subjects from nature. He was to be encouraged in this activity to see if he developed any further aptitude for it. Another promising area of skill development was his ability to navigate the menus on the computer that had been set up for him. For example, he had become adept at using the history feature of the web browser to retrieve YouTube clips he enjoyed. Next steps would involve simple computer games that would further develop his cognitive ability. A training program to scaffold such learning would need to be put in place. Above all there needed to be the greatest vigilance in identifying whatever potential he had, in whatever form it might take, at whatever life stage he was in, then to foster it, nurture it, to make sure this potential was as fully realised as it could be.
In terms of overall attitudinal conduct, he was never to be treated as the object of ridicule or contempt. He was to be treated with warmth, respect, and as someone who has a right to be in the world. His apparent remoteness was not to be seen as an opportunity to neglect him, to leave him to his own devices for hours on end because he appeared to be fine. Alex may have appeared remote, but he liked and needed people. Sometimes he waited for his mother to come to the table before he started on his own meal, even when he was ravenously hungry, even when a steaming serving of his favourite dinner was right there in front of him. You could see it in his eyes. Mum isn’t here. I’ll wait for her to come before I eat, because I want to eat with her. Sometimes — not that often but often enough — he would get up from watching his YouTube videos and come and look for either one of us. He wouldn’t ask to do anything: he was just checking in. For example, on a weekend afternoon, he would come to my study, stand in the doorway, look at me, his eyes full of shy curiosity. Did he want to talk to me? Did he want to say something to me?
This was one of my greatest wishes, that someday he would speak to me. That someday the part of his brain that governed speech would undergo a magical transformation and he would be able to speak fluently. I knew this was an unrealistic expectation on my part, that I had to accept him for who he was, that the world had to accept him for who he was, and that this was the world we needed to work towards: one where you held equal value no matter who you were, no matter whether you might be able to talk or not. In the meantime, while I waited for that world to come, I would talk to him. ‘What are you up to, young man?’ I’d say, turning to him, smiling back at him, pouring all my will to connect with him into my voice. Never until moments like these had I truly understood the power of the voice, how its tone, its timbre, its innate ability to seek connection, to embody tenderness, was infinitely more important than words. Sometimes Alex might give me a smile, and sometimes (only very rarely) he might give me a hug. On those rare occasion when he did hug me of his own accord, I’d feel his slender arms around my shoulders, his embrace tentative, delicate, it was as if he were reaching out to me from another world. Then he would turn, smile at me, and be gone as quickly as he appeared.
In winter, when it gets dark early, we ride through the sunsets. I time it so we ride away from the blinding light of the setting sun, then, an hour or so later, back into the rich colours that fill the sky and signal the coming of evening. The change in temperature is hard to juggle: it can be warm on the away journey, freezing on the return. At the beginning of the ride I tie an extra jacket around Alex’s waist in case he needs it. The away journey is all sun-dappled green, long dark shadows on grass turned to gold. We ride up to Meadowbank Ferry, rest a short while on a cold metal bench in the red glow of Alex’s rear tail light, watch people fish off the jetty in their puffer jackets. A little later, on the return journey, there’s that magical turning point: in a matter of minutes the parklands and suburbs darken, the sky goes pink, red, yellow, and everything turns to silhouette. On our left, the Parramatta River slowly ripples black light. On the path, Alex peddles in front of me. Out of the darkness I watch the rims of his tires, each circled with a stripe of reflective paint, whirl silver in my headlights. All around us the grass gives off a moist, chilly breath. From time to time, we pass under the big trees that rise up over the path, their teeming leaves ink black, shivering in the cold. When we ride in the dark, Alex’s manic bursts of energy rarely happen. He rides with a steady, even rhythm, as if some great weight has lifted from him, as if the dazzle of the world has been muted and his soul can rise up to fill and calm his body.
When it’s dark the path is largely deserted, and I ride immersed in his silence, his deep, inexplicable, inexplicably satisfying silence. My headlight lights up the stretch of path between us, this space of vigilance, this space that separates and connects us, that expands and contracts with our energy. I ride behind, he rides ahead, the space between us the middle of life. Adolescent boy, ready to enter adulthood, all its challenges, all its struggles, standard struggles he will largely be spared, other struggles I will never fathom. Older man, not yet old but soon to be old, struggles largely over, but not over yet. On my bicycle my body is bent forward, as if on guard to dull the impact of some future blow. On his bicycle Alex rides tall, shoulders pulled back, standing in the pedals to conquer the hills. ‘Dinner soon, Alex,’ I say from behind, for no particular reason. Dinner soon.
The challenging behaviours my son experienced during the period this essay covers, the mid 2010s, have largely passed. It is now clear they were caused by the physical and developmental changes related to puberty and adolescence.
Many thanks to Parramatta Arts Studio, where an early draft of this essay was written during my 2019 residency.
Annabel Stafford. ‘Doc. A Novel; The Dying Room: Was the Wyndham Native Hospital Eugenic?’ Doctoral Thesis, UTS, 2018.
Oxford Reference. ‘Bare life’. Accessed 5 September 2021.