Where Does My Autistic Son Belong? (Serialized)
By: Kah Ying Choo
Tags: Parenting, Autism, Anxiety, Parenting Teenagers, Autism Spectrum Disorder

In 2019, I published Where Does My Autistic Son Belong? that chronicles my journey of setting up a new life for Sebastien, my autistic son, after struggling with his aggression that erupted during his puberty and raged unabated for more than five years. This book has been very much a part of A Mother’s Wish initiative (amotherswish.com.sg) to educate parents, educators, and the public about how we can interact with autistic individuals out of genuine empathy and respect.

In the hope that as many people as possible will learn from my parenting mistakes, I will be serializing this book here. And if you do want to purchase the book, it can be found here. Funds are still being raised for A Mother’s Wish that supports programs and families of autistic individuals and Sebastien’s future.

PROLOGUE

“A-A-ARGH!”

Unleashing a blood-curdling scream, he hurtled towards me with the full weight of his body. Backing away from him, I grabbed an umbrella cane lying on the table behind me. I flailed and whacked at the flurry of blows and chilling screams of fury coming at me. All I could see was a blur of fingers, hands, arms, chest, and head. Then all of a sudden, it was over; it could have been a matter of seconds, not even a minute.

In this vacuum, a dazed and panting silence prevailed. No one entering the space at this moment could have surmised what had transpired just seconds before.

I wished that I could have gone along with the outward appearance that nothing had happened. Only the furious beating of my heart and the adrenaline still coursing through my veins held the temporary truth, but their hysteria would soon quiet down.

Or so I thought.

However, through my wavering vision, I saw something that shattered my blatant denial. I gasped: there was a swollen bump protruding from his forehead! It was not my intention, but I had done that. This injury constituted the irrefutable proof of the confrontation that had just erupted between us. There could be no escaping from the reality of the seconds-long confrontation.

I had inflicted that bump on my son. The last time he had a bump on his forehead, he was an active nine-month-old infant who would accidentally hurt himself, as he determinedly clambered up and down the stairs outside our apartment in Los Angeles. Every time it would happen, I would berate myself for being a remiss mother who had failed to protect her son from life’s pain.

Now, I was the one who had injured him. The refrain playing in my mind — “I had had to hurt my teenage son so that he could not hurt me” — offered little consolation. And as the horror of this reality began to sink in and the adrenaline petered away, I could feel the sting of the scratches and bruises on my arms, fingers, chest, and heart.

PART I

PARENTING PARADISE LOST

CHAPTER 1

EMBARKING ON THE HOMESCHOOLING JOURNEY

(August 2005 — December 2009)

Things were very different six years ago when I committed to homeschooling eight-year-old Sebastien upon our move to Singapore, my birthplace. Frustrated by the inadequacy of the “so-called” individualised curriculum Sebastien had experienced during his schooling days in the U.S., I decided that I could do no worse. That was the kind of proactive mother I had become after years of advocating for Sebastien’s interests in the U.S. and learning from some special needs teachers who showed me how to customise conventional worksheets to accommodate Sebastien’s unique learning needs. Most of all, I was a strong and feisty mother who firmly believed that her love for her son was so strong that nothing could ever break her resolve to help him grow up to be the best that he could be, despite his deficits.

Homeschooling an autistic child who struggled to grasp abstractions in literacy and numeracy, and thus scrambled away at the sight of worksheets, was no mean feat. My challenge was to design a meaningful programme that could engage him. By experimenting with creating “storybooks” based on Sebastien’s favourite places like Santa Monica Pier, where we spent most of his childhood in Los Angeles, and Las Vegas, I learnt that he could become motivated to learn when he could relate to the subject matter. Thus, I began to concretise his learning by incorporating the “adventures” of our daily life — routines such as shopping at the local bakery and excursions such as visiting the Singapore Science Centre — into a “curriculum” that I customised for him.

Through this integration of the concrete with the abstract, in which the abstractions had concrete correspondences, Sebastien’s academic curriculum literally “came to life”. Apart from the meaningful contexts to which Sebastien could relate, the worksheets consisted of “scaffolding” like hangman prompts (e.g., c_ _ for “car”); images such as clipart, drawings and photos, which could be cut and glued or coloured; and clue words to acquaint Sebastien with the part of speech (e.g., “preposition”). The scaffolding that I came up with through trial and error was designed to help Sebastien achieve independent learning, without needing me to sit by his side all the time.

Kah Ying’s self-designed customised literacy and numeracy template for Sebastien

Back then, my endeavour to teach as much literacy as I could to Sebastien was not so much about academic learning, but about instituting a tool for me to communicate with him and teach him. Through my customised curriculum, I was seeking to offer Sebastien a means of interpreting the world through this shared language with others including me. Even back then, I could already tell that formal languages (both verbal and non-verbal) would never be embraced by Sebastien as his true communication style.

Nonetheless, though I was the designer of Sebastien’s curriculum, Sebastien was my muse and collaborator. Every theme I selected and the scaffolding I incorporated into the worksheet templates were formulated with Sebastien’s personality, interests, and passions, interactions with his environment, learning preferences, and learning proficiencies in mind. As a result, the homeschooling programme was highly responsive to our life situations and Sebastien’s development, which were constantly evolving.

Ultimately, regardless of the amount of effort I put in to cultivate Sebastien’s literacy and numeracy skills, it became increasingly evident, with each passing year, that Sebastien, progressing at his pace, was still lagging more and more behind his peers in the areas of communication and academic learning. Although Sebastien was willing to engage in independent learning, he remained dependent on the scaffolding in my worksheets. Without it, he was unable to compose spontaneous sentences, let alone put together an essay. The abstractions of learning and the complexities of social interactions eluded him. Although I did not stop teaching Sebastien how to read, write, count, and converse, I suspended any specific expectations in these areas.

Instead of succumbing to fatigue, frustration, and hopelessness at this outcome when Sebastien was reaching puberty at about 12, I was undaunted. I prided on being a flexible and open-minded homeschooling mother of an autistic child who could adapt the programme to better match the realities of Sebastien’s ability. I shifted the focus of Sebastien’s homeschooling programme by introducing the cultivation of his hands-on life skills. I actively enlisted him in the performance of household chores like doing the laundry, sweeping and mopping the floor, as well as cooking on the stovetop.

In particular, I was particularly proud of teaching Sebastien how to prepare his lunch, which comprised multiple difficult steps. Sebastien had to learn how to slice a carrot into pieces; for some reason, he became adept at using my mother’s cleaver to do so. He also had to pour boiling water through a colander to drain the water from a pot of cooked noodles, which entailed overcoming the initial shock of the steam. Another difficult task was frying fish in a sizzling hot pan; this meant braving the unpleasant sensation of the hot oil drops hitting his skin. Sebastien even rose to the occasion of learning how to use chopsticks to pick up the cooked fish from the frying pan to lay them on the plate.

Eventually, we even took over the task of preparing Sebastien’s “designer noodles”, mixed with vitamins and supplements, from my mother. Making one month’s supply of noodles involved performing the following steps. First, Sebastien had to peel the skin off the cloves of garlic. Next, he would pound 30 vitamin tablets into powder with a pestle in a mortar. After we used the blender to mix together all the wet ingredients, we had to massage the mushy mixture to form the dough. Finally, he was responsible for turning the crank of the noodle machine to produce thin strands of noodles.

Another change in the homeschooling programme, which took place during the pubertal phase, was the introduction of structured physical activities. After encountering several mothers who lamented about their once-scrawny autistic sons ballooning during puberty, I was concerned that the same would happen to Sebastien. Apart from getting Sebastien to exercise with me, I signed him up for an inline skating group class with Coach Randy. An acquaintance had recommended him as an experienced coach who was adept at teaching autistic children. Using few words and explicit visual gestures, Coach Randy was highly effective at communicating with Sebastien.

Subsequently, I hired him to conduct weekly functional training sessions with Sebastien. As Sebastien lacked the understanding to engage in sports, the performance of repetitive moments in functional training offered an ideal alternative for him. Thanks to Coach Randy’s exposure of Sebastien to various strengthening exercises with a weighted vest, a medicine ball, dumbbells, and barbells, as well as ball-throwing and coordination exercises, Sebastien was transformed not only in his fitness but also in his self-confidence. You could see his positive body image in the way he carried himself and the way he moved his body.

Therefore, in my homeschooling journey of Sebastien, I was determined to bring up an exemplary young man whom people would be willing to help. Just because Sebastien was a moderately autistic young man with significant communication and learning delays didn’t mean he couldn’t contribute to mainstream society. I truly took heart in Sebastien’s capacity for acquiring hands-on life skills that far exceeded his ability to acquire academic learning.

However, Sebastien’s learning deficits were not the only challenge I faced. He also displayed a nasty streak of aggression that first reared its ugly head when he turned five. Sebastien had finally begun to imitate sounds and realise that speaking could get him what he wanted. If I didn’t deliver what he wanted fast enough after he had said one little word, he would pinch or pull my hair. At the time, I even wondered whether Sebastien’s extremely limited speech was too high a high price to pay for having a little “monster”.

Despite being small for his age in the American school, Sebastien’s propensity for aggression was legendary. At one school, Sebastien pinched and scratched his way out of the grasp of a portly teaching assistant who insisted on wrapping her arms around him and holding his hand to complete worksheets he could barely understand. On another occasion, his lovely occupational therapist came out whimpering about him pulling out her eyelashes.

Most chilling of all in my memory of Sebastien’s childhood aggression was a playdate Sebastien had gone on when he was six years old. When his playmate fluttered around him one too many times while he was doing the Etch-a-Sketch on a couch, he bit down on her chin so hard that it took a week for the bruise to heal. To this day, I am still haunted by the recollection of Sebastien plonking himself down in front of the television, while the young girl shrieked inconsolably on her mother’s lap. All the helpless “sorrys” I was muttering couldn’t mitigate the utter dearth of remorse or interest on Sebastien’s part.

Cognizant of the depth of Sebastien’s aggressive nature, I felt as though I was in a race against time to root out his aggression, while he was still small in stature. Already, it was unpleasant and embarrassing to handle an eight-year-old who would suddenly push, pinch, or pull others in public. The prospect of him doing it when he was older motivated me to be consistent in my application of the behavioural management approach of using rewards and consequences method to restrain his aggression.

In embracing this approach for managing Sebastien’s behaviour, I had not solely considered it to be an extrinsic motivator for getting people and animals to do things that they were not wont to do, but also as a tool for teaching Sebastien about the complex realities of life. For example, when Sebastien was procrastinating in his work, I would remind him that I would cancel his outing for the day if he didn’t do his work properly. And when he persisted despite the warning, I would cancel his outing, no matter how hard Sebastien cried. To me, this experiential way offered a concrete way for me to communicate expectations to someone who lacked the verbal ability to grasp abstract concepts. Moreover, this behavioural management approach also conveyed the cardinal rules of life that everyone was expected to abide by, i.e. facing the consequences of our choices by having to take responsibility for them. Therefore, by following through with my rewards and consequences, I was training Sebastien for the realities of life.

Between the ages of eight and 12, Sebastien was almost like a model child. I could count on him to follow my rules of conduct and understand my expectations without fail. I prided myself on being a seasoned parent who had a multitude of behavioural management strategies up her sleeve to whip out in response to Sebastien’s deviant conduct in a heartbeat. Back then, I was certain that my consistent adherence to behavioural management would guarantee that Sebastien would grow up to be a manageable young man who understood the rules of life and make the “right decision”.

My training of Sebastien was particularly vigorous in the fluid and dynamic real-life theatre of life that involved spontaneous interactions with members of the public. In the real world, characterised by the vicissitudes of life events and the presence of others with their own agendas, an autistic child could be easily thrown off-keel. In my desire to raise an exemplary young man, I set high standards for Sebastien: essentially, he needed to conform as close to the norms of the outside world as possible to enjoy the “privilege” of going out. He was thus expected to restrain his atypical behaviours and tendencies so that he would not attract negative attention or risk losing his privilege.

Setting such high expectations on Sebastien also placed a tremendous onus on me. I took my role as Sebastien’s life mentor very seriously. Every time, before stepping out of the house, I would put on my “game face” and brace myself to stay vigilant to Sebastien’s interactions with his environment. Whether we were walking on the congested thoroughfares of Singapore or riding on the public transport, I would be watching how Sebastien manoeuvred his way around people with an eagle eye, while scanning the surroundings in anticipation of obstacles or problems that might occur. Along the way, I rapped out terse two-word instructions like an army sergeant, “Eyes looking”, “Elbows in”, and “Walk Straight” to make him aware of his actions and behaviour. In crowded and noisy surroundings such as the MRT — the local commuter system, where these commands could not be heard, I would employ customised and highly exaggerated gestures to facilitate Sebastien’s understanding of my expectations from a distance. For instance, I would shake my head vigorously and issue a look of alarm when he hummed loudly. When he looked agitated or anxious, I would pump my hands, with palms facing downward, to signify “calm down”.

Cultivating Sebastien’s awareness of the people around him was particularly challenging in a densely-populated place like Singapore with constant pedestrian traffic. When walking through underpasses and passageways, there would be people streaking across our paths from all directions, jostling to get to where they wanted to as quickly as they could. Manoeuvring one’s way smoothly through the crowd, without bumping into another person, could seem a bit like a video game. While the instances of one bumping into another were quite inevitable, I was hyperconscious of every instance when Sebastien bumped into someone and every glare he received because he did not say “sorry” or “excuse me” when these minor collisions occurred. The brevity of such encounters often did not allow me to explain or the person to realise that Sebastien had special needs. Without me there, I feared that one day, someone would really take offence at Sebastien and hurt him. He would not be able to defend himself or defuse the situation with words.

My standard for Sebastien’s behaviour, due to his inability to communicate, was thus far stricter than what most pedestrians would have to adhere to in Singapore. In fact, very many of them often brush past you brusquely without ever stopping to apologise. Yet because of Sebastien’s verbal deficits, I placed the preponderant burden on Sebastien to be the “better person” because he couldn’t afford to slip up like the others. So I was relentless in thrusting the existence of the human world into Sebastien’s consciousness when we were out and about in the public space. Whenever he committed any “walking” transgressions or did things like pushing past people to get on the commuter train first, I would immediately pull him out of the stream of traffic, look him in the eye, and admonish him about what had happened.

I performed my role as Sebastien’s life mentor with tremendous intensity. It was what got me out of day every day with a sense of purpose. I was fighting for an outcome that most would dismiss as a lost cause so that Sebastien could have a real fighting chance in this life. Each and every moment was driven by the deadline of my unknown, but inevitable, death sentence. My mission was to get Sebastien ship-shape and ready for life before I had to leave him: he needed to be “teachable” and “lovable” so that he could attract good people into his life.

Over time, through my immediate feedback and strict implementation of the rewards-consequences system, Sebastien showed signs of progress. While he still twitched his fingers and squinted his eyes — telltale signs that he was “different”, Sebastien had learnt to adjust his walking pace in the human stream and overtake others fluidly without elbowing them or stepping on their toes. I could see how he resisted his desire to pick up every piece of garbage, at least when I was watching. All the time, I was acutely aware that he was walking on a tightrope — wavering between following his own inclinations and meeting his needs or conceding to my expectations.

In retrospect, I can see now that I had erred on the oppressive side as a parent in my anxious endeavour to help Sebastien assimilate into mainstream society. I had the perfect justification of every parent of a child with special needs: it was for his own good. Since we lived in the mainstream society, highly outnumbered by neurotypical people who could adhere to social norms, Sebastien had no choice but to obey its rules, regardless of how far they deviated from his nature. This was a fundamental reality of life that I could not change. All I could do was to build Sebastien’s social awareness and skills so that he could navigate through life more smoothly.

Thus, I was even proud of Sebastien’s capacity for withstanding my daily onslaughts of reprimands and still bouncing back with a radiant smile day after day. I even considered it to be an exercise for building the strength of character. On the good days when Sebastien was remarkably well-behaved, I would feel encouraged that I was making headway in my ambitious endeavour to sculpt Sebastien into an acceptable member of mainstream society.

In truth, my efforts belied the reality that Sebastien’s conduct would never be “good enough” for some in the mainstream society, no matter how hard we tried. Even when Sebastien the nine-year-old child was just quietly humming or pressing the sides of his face near his ears, he would still be drawing unkind stares from commuters. I would wrap my arms around Sebastien while imagining that my embrace was a dominant force field that was repelling all the negativity directed towards him. Still, the commuters would continue to stare at us with seemingly baffled and confused expressions that seemed to convey these sentiments: How can anyone display affection for such a child? How can a mother be happy when she has a child like this?

What these individuals do not realise is the sheer effort that we, mothers of special needs children, make in our pursuit of happiness. It is not just in the daily grind of coping with the challenges of our children, but also in the fact that we do so in a world that insists on enshrouding us in veils of sadness and tragedy. Even as these individuals strive to find their own happiness, they have simply decided that people like me cannot possibly hope to be happy in this life with my special needs child.

I had always been tempted to confront them with this message: all human beings are built with a proclivity for happiness: every nerve and fibre of our being strains for it. I am no different from you. It is not possible for us parents to go through our lifelong journey of raising our special children without feeding our need for happiness. This is why we are adept at finding happiness with our children in the tiniest of accomplishments, their goofy grins, and their unique ways of expressing love with their eyes and gestures. This is how we manage to stake our claim to our small doses of happiness, however mysterious it may seem in the face of an overwhelming majority of uncomprehending “outsiders”. It bears testimony to the extraordinary power of a special kind of love.

However, I never said anything. I didn’t think that they would understand. Instead, my sole act of defiance would be to hug Sebastien tighter and broaden my smile even more. And during these moments, I would feel at once the strength and fragility of my love for him. On one side, I was convinced that my love was strong enough to repel this unwarranted hostility, the fear of the different. On the other, I would feel helpless, knowing that I could not be there forever to fend for him.

Upon a more in-depth examination of my past behaviour, it is evident that my single-minded dedication to the mission of transforming Sebastien into a model young man was all about giving me a false sense of control over Sebastien’s life to keep my fear of his challenging future at bay. At a practical level, it endowed me with a sense of focus that shaped how I lived and saw myself in terms of the roles that I played as Sebastien’s mother.

I didn’t know it back then, but this period, when Sebastien was between eight and 12 years old, would be my “honeymoon years of parenting an autistic child”.

* * * * *

At the time, there were no signs that things were going wrong. In fact, I even thought that I had struck a perfect balance in my guidance of Sebastien when he began forging his own sanctuaries in the worlds of inline skating and painting. I considered his pursuit of these activities where I had interference to be the proof that Sebastien’s life was not entirely ruled by my expectations.

Although I had introduced him to these activities, Sebastien showed his inclinations for them by putting his own unique stamp on them. In skating, there was no stopping Sebastien, once he overcame his initial trepidation. However, instead of assuming the conventional low stance of the skating pose, with body crouched forward and knees bent, Sebastien stayed fully upright, swinging his torso and limbs in a fluid and free motion, as though he were just taking a casual stroll. He came up with his own moves like jumping on his skates without falling to touch the ceiling or making a turn with one foot lifted onto a kerb even as the other rounded the corner on the ground.

What was so remarkable was that for the first time in his life Sebastien was picking up a skill quickly and even faster than most of the neurotypical novices. During the skating drills, all that Coach Randy had to say to Sebastien was “Follow me” and Sebastien would be able to manoeuvre past the tiny cones with enviable ease. This was in stark contrast to many of us who stumbled and fell. In the realm of skating, it was the “neurotypicals” who did not “get” the “rules” of lateral motion, while Sebastien grasped them as quickly as the act of talking was for us.

Yet what I loved most of all about Sebastien’s skating was seeing him glide along with carefree ease. From his shiny bright eyes and explosive giggles, one could see that he skated purely for the love of skating, exulting in the freedom that came with the flight of unobstructed motion. Thus, when Coach Randy suggested that Sebastien was ready for speedskates after one year, I did not hesitate to fork out the hefty sum of money to purchase them for him.

Just as unexpected was Sebastien’s creation of his “painting sanctuary”. After years of sloppily covering entire pictures with a single colour in a lacklustre fashion, Sebastien invented his signature style on his own initiative when he turned 12. Marking out carefully-proportioned boxes on a picture with markers and covering it with a rainbow of colours, without respecting the contours of the drawing, Sebastien would strip the picture of its original identity and redefine it with his vision. From this starting point, Sebastien went on to experiment with watercolours and water, playing with their unique properties to produce one-of-a-kind abstract watercolour paintings of vibrant hues and dynamic energy.

People often ask me what Sebastien’s paintings are about. Can he explain or describe them? When I reply that he does not, they are invariably disappointed. But to me, Sebastien “speaks” by communicating his essence — his willingness to push boundaries, his fiery passion, and his larger-than-life personality — through his paintings, loud and clear. The problem lies in the fact that we don’t understand it, because our own communication is limited to words.

But right from the very start, Sebastien’s immersion in painting wasn’t so much about producing something, but about the process. In fact, much of Sebastien’s early works were soaked with so much water that they would end up in the trash chute. Adamantly unguided and self-taught, Sebastien derived his pleasure from immersing in the sensory experience of experimenting with water and paint. Even more importantly, painting offered him a sanctuary from life. Whenever he painted, all his being was fully focused on the task at hand: there was no fidgeting, no strange mannerisms of squinting his eyes or pressing the sides of his face.

And then two years later, Sebastien’s interests would further expand when Jerome, my then-boyfriend, entered our life and exposed Sebastien to the joys of travelling. Over the subsequent years, Sebastien would consistently wow us with his ability to undergo adventures, both planned and spontaneous, such as bounding up the volcanic mountain of Krakatoa, even after throwing up profusely on a rocky three-hour boat ride that should have taken half the time. He endured gruelling night train journeys that entailed waiting for them at ungodly hours at train stations and getting up just as early to catch sunrises at monuments like Borobudur and Mount Bromo.

All in all, Sebastien exuded a fiery zeal for life, which pulsated through his bounding strides that always made you think that he was about to take flight with every step he took. And when Sebastien flashed his infectious smile that stretched from cheek to cheek, with his eyes glowing with delight, he could light up the world around him and make you smile for no reason whatsoever.

Thus, for the first four years of the homeschooling journey, Sebastien resonated with tremendous potential. I felt privileged to be an intimate witness of his transformation from an insecure, reserved, and withdrawn boy into a confident, expressive, and dynamic youth with a passionate appetite for life. I thought that we were on track in our mission of turning Sebastien into an extraordinary autistic individual despite the constraints that his communication and learning delays placed on his development.

Even though homeschooling an autistic child without respite was tiring, I fought hard for this narrative to have a happy ending. So even on the bad days, when I would wish that I hadn’t made this homeschooling commitment, I could always convince myself that my homeschooling journey was worth it. Ultimately, back then, the good days far outnumbered the bad ones. All I needed to do was to remind myself to take a step back and celebrate the progress he was making, however slow and tortuous it was.

Chapter 1 to be continued…