Where Does My Autistic Son Belong (Serialized): 2nd part of Chapter 1 & Chapter 2
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.
Chapter 1 (2nd Part)
EMBARKING ON THE HOMESCHOOLING JOURNEY
(August 2005 — December 2009)
Nestled in the midst of the bustling city life of Bangkok, overlooked by flashy skyscrapers that towered over the dirty and messy streets, is a Buddhist temple with its vibrant red and gold hues gleaming under the hot tropical sun. After our “urban hike” under the sweltering heat and the incessant noise and chaos of the city, the interior of the temple, with only a few visitors seated on the floor, their legs folded reverently beneath them, offered a welcome respite.
I suppose that worshippers who go there to pray in front of an impressive altar featuring an enormous golden Buddha, as well as visitors, would be awed by the elaborately decorated panels, walls, and high ceilings. However, it was the quiet and calmness of the atmosphere that I found most entrancing.
But I did not know how long we could really stay here with Sebastien in tow. I am always nervous about bringing Sebastien into quiet places, not knowing whether the atypical noises he emits would destroy the quiet and disturb others. So I settled us down on the floor of the temple, as close to the threshold as possible; thus, we could make a quick exit should Sebastien become too noisy. To my surprise and relief, Sebastien quietly rested his head on my lap.
As I kneaded Sebastien’s forehead and temples gently with fingertips, unexpected tears dribbled down my cheeks. In my rare moment of relaxation, my façade of strength and determination, which kept my exhaustion and stress at bay, crumbled. I became aware of how tired I was, not just as a homeschooling mother with all the accompanying tasks, but also as the constant bearer of the weight of responsibility of Sebastien’s amorphous future. Focusing solely on the present in a time-consuming and labour-intensive homeschooling journey has made it possible for me to keep my grief and fear about Sebastien’s future in check… most of the time. However, the reality is that these challenges are an ever-present source of stress. As a single mother with a limited income, I do not feel secure or confident that I possess the resources to go the distance and do right by Sebastien, whatever that may be.
A tear fell onto Sebastien’s forehead. He tilted his head up slightly and gave me a steady look. I didn’t know what it meant. Still, I found in it the reassurance I needed to gather myself together. I was not alone on this rocky road to who-knows-where. Although I always wished that I could have a better understanding of Sebastien, I liked to believe that our last four years of homeschooling had brought us closer. In this space of tranquillity, I could almost place my trust in the possibility that the relationship I had built between Sebastien and me would be enough to pull us through whatever lay ahead.
After all, both of us have come a long way. This homeschooling journey has transformed my being and identity from the inside out. By nature, I am fragile and sensitive. During my childhood, my response to any confrontational situation was to disintegrate into tears. Casey, my far feistier sister, just 15 months younger than me, testifies to my extraordinary transformation: “You are not like you were before. Sebastien has changed you for the better. He has made you stronger.” I can literally feel this strength at the pit of my belly, always poised to leap into action, be it to protect Sebastien or to reprimand him for his poor attitude. Parents of autistic kids with whom I spoke often commented that they were not as tough as I was. And I would always reply, “I was not as tough as I am today.”
Certainly, my strength has been sharpened and honed by my decision to homeschool Sebastien — a massive responsibility with high stakes. This is why I continuously push myself to become stronger and stronger to keep on running this marathon with commitment and discipline. Feeling discouraged or resigned is a luxury I do not indulge in.
Sebastien has also changed for the better. Through growing pains characterised by continuous struggles in communication and learning, Sebastien has evolved from being a helpless and dependent autistic to become his own person. He stands out from the crowd with the confidence in his strides and alertness that radiates from his lively eyes. Thanks to his powerful visual-spatial orientation skills, Sebastien can always find his bearings, turning him into a daring and avid participant of life, whether he is in Singapore or travelling overseas.
Many of us, including me, his closest ally, take for granted Sebastien’s ease with his being. We don’t realise what strength and courage it takes for him to live under a perpetual spotlight of baffled looks and unkind stares. Instead of feeling exhausted and discouraged, Sebastien walks with that extra spring in his step, smiles a bigger smile than most can summon, and emits an enviable sense of joy. By staying true to his spirit, Sebastien displays a healthy sense of defiance and indifference towards those who do not know and understand him.
At the end of the day, all of us parents who have known their children as tiny, helpless beings, wish that we could do something to spare our children from a life of suffering. As with parents of special needs children, I am all the more propelled by the dire need to do all that I can to ensure that Sebastien can fend for himself when I am no longer able to help him.
However, whenever I step back to reflect on my own checkered past, I can see that it is not always within the power of one’s parents to pre-empt the unpredictable pathways their child’s life can take. Certainly, my parents must have wished that my path in life was not rocked by manic depression and having an autistic son. Yet, somehow, through these hard times, I still managed to turn my life around. In fact, the entry of Sebastien into my life would be instrumental in freeing me from the vicious circle of mania and depression. No one, including, my parents could not have anticipated such a turnaround of events.
Similarly, I harbour hopes that Sebastien too would somehow find a way through his difficult life, which I cannot as yet imagine. I truly do not know what Sebastien would do the day when I am no longer around to guide him and intervene on his behalf. Will he be able to reach out for help and receive the encouragement and kindness from others when he most needs it? I hope so.
In the meantime, by pursuing our homeschooling endeavour, I am preparing Sebastien for the day when he has to find allies — open-minded and loving people — who can recognise the value in him and offer him the opportunity to realise his potential. This is my dream for his challenging future.
* * * * *
When I chanced upon this diary entry, I was stuck in the throes of my conflict with adolescent Sebastien. Although I could barely recognise this younger, less experienced, and more hopeful version of me, I could feel her love for him and hopes for his future. She was not at all like the burnt out version of me at the time, who had lost much of this strength, courage, and most of all, hope for Sebastien’s future.
At the time, I was contented to gaze at my younger, ignorant self with a sense of poignancy, through the veil of nostalgia. Even if I could have gone back in time to warn her, I wouldn’t have. I didn’t want to spoil it for the hopeful Kah Ying who still harboured dreams for Sebastien. Of course, she couldn’t have known that she was dealing with a younger version that was considerably quieter and more restrained in expressing his inner life. She certainly had no idea about the build-up of tensions simmering beneath the surface of Sebastien and the dramatic turn that the “narrative” she was writing would take away from the happy ending she was striving for…
CHAPTER 2
TROUBLES ON THE HORIZON
(January–May 2011)
I was slow to catch on to Sebastien’s entry into puberty. Engrossed in the day-to-day homeschooling activities during which I saw Sebastien face to face every day, I was only made aware of his physical transformation through the exclamations of relatives, friends, and neighbours. Yes, I had barely registered the fuzz appearing above his upper lip, the red pimples popping out on his forehead scarring his once-smooth complexion, and the sprouting of hairs under his armpit.
Or perhaps, it was Sebastien’s initially unperturbed reception to these changes, which lulled me into complacency. In fact, he was even able to follow my instructions about engaging in private acts like masturbation ONLY in the bedroom behind closed doors. Apart from a few minor accidents, Sebastien was largely discreet; furthermore, he would take the initiative to wash his accidentally-soiled undergarments in the bathroom. All in all, Sebastien appeared to be taking his puberty in stride.
However, little by little, as Sebastien headed towards the 14th year of his life, he began to display the first signs of teenage rebellion. The change was barely perceptible, more a manifestation of petulance, rather than outright rebellion. For instance, I would have to make the request several times to ask a once-helpful child to perform simple one-step tasks such as turning off the light before he would do it grudgingly. A simple “yes” to a question, which typically took him five seconds to react to, could take as long as 30 seconds. When he did finally spit out the one syllable, he would give you a pained look to make sure that you knew that you had subjected him to an ordeal. Even my giving him his favourite cheese breadstick as a special treat would not yield a “thank you” or an enthusiastic smile. He just gobbled it down with chilly obliviousness.
There was definitely a sea-change in the air. For the first time in a long while, I felt like a disoriented mum who could not find her footing. It was not a position I was comfortable to be in. At first, I made excuses for him in my mind. With regards to his delayed responses, I would reassure myself, it was hard to tell with an autistic child who did not speak readily. Maybe he didn’t understand me, or he couldn’t hear me due to the distracting surroundings. I told myself that they were just minor instances of non-compliance, not even close to his tantrums and aggression of the early years. There was no reason to get alarmed at these slight changes. My parenting experiences had built me up to be a calm parent who could problem-solve her way through any crises with her autistic son. This had worked for me for the last 14 years of his life. So why should things be any different?
In retrospect, I would come to recognise that I was always two steps behind the situation because I was looking at Sebastien through the lenses of the past. At the subconscious level, I still saw Sebastien as a boy, not a young man-in-the-making. For several months, Sebastien had escaped my notice in crowded public spaces. As Sebastien was an independent child who could navigate through the streets, I did not hold his hand unless it was necessary. However, very often, I would have difficulties locating Sebastien. You see, I was so preoccupied with looking for Sebastien, the boy, that even when Sebastien, the young man, was standing in front of me, it would still take me another few seconds to register his presence. With his tall, gawky frame and his face altered by the slightly swollen red pimples and the increasingly prominent tufts of hairs on his upper lip and chin, he had become a complete stranger to me.
I didn’t know this then. But to become a parent who could grow in tandem with Sebastien, I had to say good-bye to Sebastien, the little boy, whom I thought I knew how to manage with confidence and love. It also meant having to recognise that I would be starting from Square 0 for this parenting phase of the journey. Today, I wonder whether I would have willingly stepped out my comfort zone — a space in which I was the all-knowing mother of an autistic boy, who had strategies and approaches up her sleeves. I don’t think I would’ve if things hadn’t spiralled out of my control.
* * * * *
It wasn’t long before things got weirder, forcing me out of my complacent shell to see that something was amiss. One day, out of the blue, the 14-year-old Sebastien who had not bed-wetted once since he was finally toilet-trained at five years old flooded the entire bed in such a spectacular fashion that he stank up the entire room!
To rule out any medical reasons for Sebastien’s bedwetting behaviour, I went online to do some research on adolescent bedwetting to determine whether I should take him to the doctor. Suddenly, I recalled the whiffs of an unpleasant odour that had greeted me for days whenever I stepped into his room. However, when I patted his bed for telltale signs of wetness, it was as dry as it could. In the end, I decided that the smell must have drifted in through the window from the surrounding neighbourhood and I did not investigate further. With this recollection, it dawned on me that Sebastien had been deliberately wetting his bed! Like a scientist engaged in some kind of a perverse scientific experiment, Sebastien had been bedwetting a little more each day to see whether and when I would discover his misdeed. And when I failed to notice what was going on, he just let loose completely!
With this discovery, I wasted no time in attempting to nip this behaviour in the bud by implementing a “zero-tolerance” bedwetting policy. Apart from getting Sebastien to wash the bedsheets and his clothes, I denied him the “privilege” of wearing cotton underwear and gave him disposable ones that were not as comfortable. To top it off, I revoked his right to sleep on the bed on the days he bedwetted and cancelled his outings; instead, he had to sleep on a gym mat in the living room.
Over the next three weeks, my morning would start with a daily ritual of interrogating Sebastien, “Did you pee in your bed?”, followed by a thorough inspection of his bed. Invariably, Sebastien would answer, “Yes.” In response to his affirmative answer, I would pounce on the bed, patting down every patch, particularly the areas tucked up next to the wall. On one occasion, when I chanced upon a damp patch on the edge of the bedsheet, I realised how Sebastien had evaded the initial discovery of his bedwetting by peeing on the periphery of the bed. The sneaky bugger…
Even though I had instituted this inspection to be a serious attempt to stop his bedwetting behaviour, Sebastien treated it like a game. Even when he didn’t wet the bed, he was still confessing to his “crime” so that I would go through the procedure of inspecting the bed. When I would declare the bed to be clean, he would explode in a series of giggles, as though he had “tricked” me.
After three weeks of on-and-off bedwetting, Sebastien did ultimately stop wetting his bed. While I would have liked to believe that my zero-tolerance behavioural management policy worked to deter him from doing so, it was more likely that Sebastien was just done playing.
* * * * *
My “victory” over Sebastien in the bedwetting battle was quickly consigned to the dustbin of time. More than just an isolated event, Sebastien’s bedwetting was a “call to arms”, which heralded the start of his full-on teenage rebellion. Unlike his younger self, which at least attempted to restrain his impulses, Sebastien, the teenager, appeared to be seizing upon every opportunity to do what he knew he wasn’t supposed to do. In the bathroom, when no one could be watching, Sebastien would scrape away labels from shampoo and liquid soap bottles. When we were walking out in the open, Sebastien would walk behind me deliberately so that he could shove dirty trashcans against the wall and orient them in a specific position. Soon, Sebastien would constantly interrupt his walking by picking up pieces of garbage like cigarette butts. He would even hover over drains filled with stagnant water to retrieve sodden litter. Despite repeated warnings about these seemingly minor transgressions, Sebastien persisted.
From a behavioural management standpoint, I felt at a loss. On the one hand, I genuinely thought that what he was doing was so trivial that it didn’t warrant any “punishment”. On the other hand, his persistence in engaging in this sort of behaviour was deeply troubling. Once upon a time, Sebastien had cared about what I thought. But I got the impression that it didn’t matter anymore.
And as I dithered, Sebastien continued his foray into the bizarre. For a spell, he decided to do everything with his eyes closed. This meant that it took him forever to perform every little action. Watching Sebastien unlock the front gate of the apartment became an ordeal, particularly when you were carrying heavy bags of groceries. He would fumble around the lock with his fingers to determine where he could insert the key. Even retrieving items from the fridge would take a long while. Sebastien would open the fridge door just a peep; thus, he would have to rely solely on his sense of touch to find the item he was seeking. It was exhausting to snap at him, “Open your eyes!” or “Hurry up!” all day long to disrupt his experiment.
Once Sebastien lost interest in his “blindness” experiment, he came up with yet another odd behaviour of how he would interact with his surroundings, not only within the house but also in public. Essentially, Sebastien would deliberately transform every straightforward route into a complex and tortuous course that involved detours to incorporate every obstacle along the way. To walk from the front door of the apartment to his bedroom, Sebastien would slide along walls, step up on dining chairs, clamber over couches in the living room, and crawl under tables. By turning every path into an obstacle course, Sebastien would baulk at any request to return to his bedroom to fetch things that he had forgotten once he reached the front door! And he refused to entertain walking the “normal” way.
Similarly, amid the crowded underpasses of train stations and the interiors of the shopping malls in Singapore, Sebastien would zigzag from one side of the passageway to another, while tossing in a few odd-looking partial pirouettes to the right and to the left. At every surface — be it a wall, lamppost, railing, pillar or shopfront, he would lean on it and rub his back against it as he moved past it, not unlike what a cat would do. And for a few seconds, as he leant against the surface, Sebastien would stretch his tall body skyward, while standing on tiptoe. At the same time, his face would be contorted by his closed eyes and slightly-opened mouth, as though he were lost in ecstasy. After this brief interlude, he would resume his careening course onward without checking for the flow of the human traffic, often almost colliding with passers-by.
Though I had been Sebastien’s staunch champion throughout his life, I found it hard not to be disturbed by his mannerisms. All that I had taught him over the last four years had disappeared without a trace. Even though he was my son, it wasn’t hard for me to identify with the people who were staring at him in barely-concealed disgust.
Call it a parent’s vanity. But it deeply pained me that Sebastien was projecting an image of himself, which was not representative of who he was in totality. How could those whose paths had crossed with this bizarre young man possibly imagine that he was a natural-born skater, a passionate painter with a bold sense of colours, and an intrepid traveller? Instead, all that the people could see was a crazy young man.
Moreover, at a practical level, Sebastien’s strange way of walking intruded into our daily life. Keeping appointments became a challenging feat, as I would never know how long Sebastien would take to arrive at any one place.
I had to intervene. This time, I came up with a multi-pronged, bootcamp strategy to “reprogramme” Sebastien’s walking style and demeanour. Every time Sebastien pursued a zigzag path, leant on walls, or squinted his eyes, I would bark out the relevant orders: “Walk straight!”, “Stand straight!”, or “Eyes Open!” If he persisted, I would refuse to move another step, until he retraced his previous footsteps with the following instruction: “Walk properly.” As walking back to a previous location was something that ran counter to Sebastien’s inclinations, my strategy gave Sebastien a solid incentive to walk “normally”. I was adopting this strategy rigorously both inside and outside the household. And to impose even more pressure on him to change, I would withhold his paints and markers from him so that he could not engage in his favourite activities of painting and colouring, whenever I was not satisfied with his performance.
In executing this strategy, I thought of myself as the “Drill Sergeant Mama” because I was continually snapping orders. I had come up with this name as a joke to lighten up my load. However, it belied the stress of having to micromanage Sebastien’s every movement with military discipline by playing this role day after day. Although my efforts shifted Sebastien’s walking style and demeanour closer to the norm, monitoring him at this level of rigour exacted a heavy toll on me.
One day, after getting off the bus and seeing Sebastien doing his zigzag walk again, I just sank down on the kerb at the outdoor parking lot of the housing estate where we lived. Though my mind summoned me to get up, every nerve and fibre of my being refused to budge. The thought of having to issue another order kept me firmly planted on the kerb. I had had it with being “Drill Sergeant Mama”. Regardless of my attempt to make light of this situation, playing this role was exhausting! And as I sat there with my whole being crumpled in fatigue, I was conscious of how close I was to the limit of my endurance.
Noticing that I had sat down, Sebastien assumed that I was trying to get him to correct his movements. So he began to retrace his footsteps back to the original position and moved forward while shouting out the commands that I would typically have been saying to him: “Do again!”, “Walk Straight!” When I still did not get up, Sebastien just kept repeating this whole procedure several times until I finally pulled myself up. To be honest, I still can’t remember how I got home that night.
What I do recall is that I did something that I had never done in my parenting life with Sebastien that night: I checked out. Without even breathing a word to him, I went into my bedroom and locked the door. Despite him calling “mama” repeatedly at the door to entreat me to come out to do our night routines of “rating” his performance for the day and writing down the activities for the next day in his calendar, I ignored him and fell into a deep sleep.
The next day, when I emerged from the bedroom, I knew that I was done with playing “Drill Sergeant Mama”. Luckily, Sebastien’s strange walking style also petered out soon afterwards. Once again, as with Sebastien’s bedwetting, I reckon that it was more likely because Sebastien had decided to relinquish his bizarre behaviour than anything I had done.
* * * * *
Through both of these episodes, I could tell that any vestige of control I had over Sebastien was illusory. Unlike his far more restrained younger self, Sebastien the teenager had no qualms about unleashing his annoyance and discontentment by yelping and jumping on the spot. Whenever he did so, Sebastien’s physical transformation and its implications were thrust into my consciousness: Sebastien the young boy had been replaced by a young man whom I could no longer stand up to physically.
Therefore, despite my two victories, I was weighed down by a heavy sense of premonition. A powerful and invisible force was afoot: I didn’t want to imagine the threat he would pose if he continued down this path of non-compliance. I could no longer stand up to Sebastien: the days when I could physically move Sebastien to prevent him from getting into trouble or protect him from others were gone.
Although I knew the day when I would no longer be Sebastien’s keeper would come, I had not expected it to arrive this soon. I was angry. After missing most of his milestones throughout his life, Sebastien would meet the teenage milestone in as timely a fashion as his neurotypical peers. How could life get more unfair than this? In fact, it didn’t take long before the edifice of proper behaviour, which I had painstakingly erected over the years, came tumbling down.
* * * * *
The first strikes took place on what should have been an ordinary day in October 2010. Emerging from our routine Thursday outing to the movies, Sebastien and I had a small errand to run: buy two bags of organic rice cakes and a bunch of bananas — must-have items for Sebastien’s breakfast — at our frequented hypermart. The only obstacle I anticipated was navigating past the throngs of peak-hour shoppers in the evening. So, after informing Sebastien of the mission, I set a fast pace, eager to get these items as quickly as possible. As we still had to take the bus home, I wanted to beat the heavy commuter traffic when everyone was rushing home from work.
Getting the rice cakes from the organic food aisle was a cinch; we just had to get the bananas. Preoccupied with selecting a bunch that was just ripening, I did not notice that Sebastien had already placed one in our shopping basket. Without thinking much about it, I quickly removed the bunch of bananas he had chosen and replaced it with mine, giving my justification, “No, this one is better.” Looking angry, Sebastien grabbed the bananas that he had chosen from my hands and returned it to the basket. Still not overly perturbed by his action, I picked up his bananas and explained firmly, “No, Sebastien, too many bananas. They’ll go bad and we’ll have to throw them in the trashcan.”
At that instant, Sebastien grabbed the wrist of my hand that was holding the bananas he had chosen and shouted, “Bananas!” His disproportionate reaction to the situation shocked me. Never before had Sebastien expressed such a strong opinion about bananas — a food item that was part of his routine food intake, but by no means, his favourite.
“Let go!” I ordered him. He withdrew his hand instantly.
“Sit down!”
This was a strategy that I had used in the past to disrupt Sebastien’s momentum when he was overly agitated or excited to force him to calm down. I also needed time to get over my initial shock in order to evaluate the situation as objectively as possible. But my mind was going into overdrive. Had I been at fault for failing to recognise the importance for Sebastien to choose his bananas and thus escalating the situation? However, even if this were true, Sebastien’s aggressive act was still out of proportion to my reaction. Letting Sebastien get off scot-free with his aggressive behaviour felt like a slippery slope that did not bode well.
I decided to adopt a firm stance against him. Perhaps, Sebastien had already sensed my decision. Before I could even reprimand him for his transgression, he sprang to his feet, lunged viciously at me, and whacked my upper arms with fury.
Though I was reeling in shock at the unfurling of the events, I looked Sebastien sternly in the eye and said, “You are in big trouble. Now you’ll have no rice cakes and bananas!”
Amidst all the stares of the shoppers, my only focus was to get Sebastien out of the hypermart that was situated in a crowded shopping mall without further incident. I picked up the basket of rice cakes and bananas and left them in a corner. With the adrenaline coursing through me, I held him firmly by the arm and pulled him out of the store. Marching purposefully ahead, I ignored Sebastien’s protests about the rice cakes and bananas. At that point, I still did not feel the sting of his whack or embarrassment at the crowd of horrified onlookers. I had entered into the crisis mode.
If you had been one of the passers-by, you might have been fooled into believing that I was a seasoned parent who knew exactly what she was doing. But it was just a façade. No one would have known how hard my heart was pounding or how helpless I felt. Even when I had succeeded in manoeuvring Sebastien out of the crowded shopping mall, I felt lost and bewildered. Of course, we could have gone home. More than anything, I wanted to pretend that the banana episode had never happened. However, home no longer offered me the assurance of the sanctuary that I had once felt with Sebastien.
To me, the sky had crashed down on my head and my world was falling apart. The episode was not about bananas. This episode portended something far worse for our immediate future. Over the past four years, I had consistently applied the behavioural management system of rewards and consequences to regulate Sebastien’s aggression. I had been so consistent because I knew that I did not want to have to contend with it when he was older, bigger, and stronger.
Clearly, it had not worked.
I foraged through my frantic mind for something that I could do to address this situation. For years, I had prided myself on being able to come up with solutions to solve any issues with Sebastien. I called it my therapist persona who could embark on a rational quest for answers, instead of succumbing to the emotional hysteria of a mother. Unfortunately, that night, my therapist persona was hardly adequate in containing the panic and hysteria bobbing beneath the surface of my façade. In fact, I saw through my reflex tendency to find answers immediately not so much as a sign of my competence, but my desperate need to keep these overwhelming emotions from breaking through the dam of my composure.
My strategy for responding to Sebastien’s aggression that night was to take him to the neighbourhood police station. Perhaps, getting the police to intimidate him a little could give him a concrete sense of the abstraction notions of “crime” and “punishment”.
After a couple of episodes in which Sebastien attempted to zip up other people’s handbags, I had tried my best to explain the concepts of “police” and “prison” in concrete terms that he could relate to. Essentially, a policeman was someone who could lock him up in a place where he would no longer leave to ride on the commuter trains, see movies, or go skating. Nonetheless, I could never be sure that Sebastien, with his limited language and understanding of the broader norms of society, could truly grasp the full implications of what I was saying.
Clinging onto my half-baked idea of enlisting the help of the police, I strode towards the nearby police station, even though it entailed navigating past throngs of peak-hour crowds congregating near the bus stop. I was moving forward with a semblance of a sense of purpose. It was important for me to think that I was doing my usual thing of coming up with strategies to deal with a situation. I needed to believe that I was still a parent who could manage her autistic son.
From the corner of my eye, I could see Sebastien moving quickly to keep up with me. It was rare for Sebastien not to know where he was going. But that night, I did not care about any distress he could be feeling. Instead, I was feeling so overwhelmed about our life that I wanted to escape from it. I remember gazing with envy into the faces of the people fleeting by, while imagined them returning home at the end of their long workdays and yearning for their normalcy. Although many looked tired, stressed-out, and world-weary, I wanted to trade places with them. For even as I strode towards the police station, deep down inside, I was feeling hopeless: What could the police do? How could they help me?
After seating Sebastien down on the couch in the lobby of the neighbourhood police station, I approached the counter hesitantly. Gesturing at Sebastien who was seated calmly on the couch, I described what had happened to the police officer on duty. While the police officer listened to me with a sympathetic expression, he could barely conceal his perplexity: “Madam, do you want to charge your son?”
“No,” I cried out immediately. I wanted to scream at the police officer with his play-by-the-book rigidity: “No, I don’t want to charge him. Didn’t you hear what I just described? I wanted to do something now so that I won’t ever have to charge him with a crime!”
Instead, I attempted to come up with some kind of a request that he might be able to deliver: “Is there something you could do or say to scare him? Could you scold him or show him handcuffs?” This would be a concrete show of force that could leave an impression on Sebastien and deter him from being aggressive. Or at least that was what I had hoped to accomplish by coming to the police station.
Shaking his head and furrowing his eyebrows, the police officer immediately responded behind a façade of formality: “There is nothing I can do to him unless you want to charge him.”
I was devastated. All that my encounter with the police officer had succeeded in doing was to thrust me into a terrible emotional space. How had I arrived at this situation? I had homeschooled my autistic son to raise him to become a model young man. And there I was, standing in a police station, being asked whether I wanted to charge him.
As I shifted my gaze from the young and small-built police officer to Sebastien who continued to sit there nonchalantly, looking hardly distressed to be in a police station, I surrendered. This police officer would not have been successful in pulling off a convincing show of authority to strike fear and respect into Sebastien’s heart anyway.
I shook my head and replied, “No, I don’t want to charge him.”
Walking out of the police station, I dreaded the thought of the impending bus ride filled to the brim with passengers. Given all that had happened earlier to this day, who knew what else could trigger him?
As I had feared, the bus that we took home was crowded with standing room only. To make things worse, the driver jerked to a halt at virtually every single bus stop and jolted into motion, causing standing commuters to jostle against one another. With Sebastien’s face and body turned away from me, I could not tell what state of mind he was in. I was hyper-conscious of his trademark humming sound; any change was an indication of a shift in Sebastien’s emotion. But the reality was, if something were to happen, there would have been nothing I could have done; there was so little room to move. So, throughout this 20-minute bus ride, I held my breath, constantly worried that someone, something, or the jerky motion of the bus would set him off. I carried the guilt and the burden of someone responsible for taking a wild animal that could erupt in aggression any second onto a bus. Although we ultimately made it home without incident, I didn’t celebrate. Travelling in a state of so much stress had taken the wind out of my sails. I could no longer feel confident about taking Sebastien on public transport. Something had changed irrevocably.
Over the next few days, I responded with the only approach I knew how — behavioural management. I suspended his outings for the next few days to send a strong message that I did not condone his aggression. Instead of giving him his customised homework assignments, I gave him pages with lines chronicling his “crime” and the resultant punishment to copy out. Moreover, I deliberately stayed away from him, not helping him in the performance of any task including cooking his food.
Essentially, I went on strike! I had sought to create a simulation of a reality where I didn’t exist to force him to more aware of others’ feelings. At the time, I was rather proud of coming up with the “carer going-on-strike” version of behavioural management!
Although I considered my strategy to be a creative modification of behavioural management, I wasn’t solely approaching the situation strategically. It was also a genuine protest on my part, which was deeply emotional. I was emotionally hurt. Fully cognizant of the unfairness of life in inflicting the condition of autism upon him, I seldom resented having to go the extra mile for Sebastien. Everything in my life revolved around ensuring that the homeschooling universe for Sebastien remained intact and his schedule ran smoothly. And since our homeschooling days had begun, he could count on me to be there, just as surely as the sun would rise every morning. With an autistic kid who did not verbalise his emotions, I seldom received thanks for anything I did for him, without prompting and getting a flat, scripted “thank you”. Thus, Sebastien’s aggression broke my heart; it felt like the ultimate betrayal of all that I had done for him. I could live without the thanks, but I refused to put up with the attacks.
However, when Sebastien had completed the punishment period, I could see that my protest had not made a dint of difference in Sebastien’s consciousness. We had entered a new era in our homeschooling journey…