Serialization: Chapter 18 of Where Does My Autistic Son Belong? SEBASTIEN’S “GRADUATION” (September 5th — 17th, 2016)

From time to time, I will hear from parents who have apparently been following my serialization rather closely. It is always a nice surprise for me. Unfortunately, I haven’t been as regular in my serialization as was my original intent. This is particularly the case when I am busy with my paid work as a copy editor, educator, and as an Inclusion & Diversity specialist (kahyingchoo.com). Generating an income with this work is important, as A Mother’s Wish is run on a lot on the voluntary efforts of Jerome and me (that includes free behind-the scenes counseling of families in distress, apart from the public talks and workshops, as well as publications). In the meantime, I am sustaining the “Bali Bubble” for Sebastien and his wonderful carers & family.

So if you would like to move at a faster pace, the book, Where Does My Autistic Son Belong?, is available for sale online at A Mother’s Wish, a social enterprise that seeks to to raise awareness about the need to treat autistic individuals with genuine respect and empathy. Our latest illustrated e-book, Beautiful Monster, a short fictionalised book inspired by Sebastien’s story, is also available.

CHAPTER 18

SEBASTIEN’S “GRADUATION”

(September 5th — 17th, 2016)

That first night on September 4th, after leaving Jerome, I collapsed into the bed and fell asleep almost right away. There wasn’t even the need for the book that I carried into bed to keep me company. It must have been just 9:30 p.m.

The next morning, I was up as early as 5:30 a.m. From the gaps in the curtains drawn over the floor-to-ceiling windows of my room, I could make out the first wisps of light behind the coconut trees on the not-too-distant horizon. There was something so alluring about the quiet solitude of the early morning that I pulled off my bed covers and jumped out of bed.

Not wanting to wake Sebastien up, I opened the windows gingerly and stepped out across the ledge to the patio. This was a slightly risky shortcut, as it entailed stretching your foot across a small drop to the ground. However, I wouldn’t need to go through the dining room area — the central space separating our bedrooms — and inadvertently wake Sebastien up with my movements by opening the creaky bedroom door and the rattling front doors. Seated on a blue Kettler gym mat that I had placed on the rattan table, I surveyed the rice paddy area stretching out ahead of me, before noticing the droplets of the morning dew clinging tenderly to the leaves of the hibiscus plant in the garden. During that brief honeymoon period, I discovered how sensate one could be and how one’s mind was attuned to one’s surroundings when the world was still and quiet. It was absolutely brilliant. At this golden hour, the morning was just so incredibly peaceful. No inhabitants had yet risen to come by on the dirt path. There were also no traffic noises from the main road to disrupt the calm. In the midst of these natural surroundings, I fell into a meditation. It was so easy to do.

This became my routine in Bali. Somehow, living right in the middle of rice paddies made it easy for me to follow the rhythms of nature by rising with the sun. Sebastien followed suit, without any urging on my part. Without the stimulation of streetlights and traffic noises, he slept as early as nine at night and got up at six in the morning like clockwork. This was a much-welcome change from his sleepless self in Singapore, when he could go for a few nights without sleeping, disrupting the neighbours with his nocturnal humming and singing. Furthermore, his sleep-deprived person would be restless and agitated during the waking hours of the day, thus making him unpredictable and scary.

For Sebastien, after washing the plastic sleeve on which his painting from the night before was placed, he would do his colouring at the patio. With the picture secured on a clipboard that was put on his thigh and his feet propped on the rattan table, Sebastien would go about his colouring with his markers in his usual systematic fashion. Essentially, he would superimpose a rainbow of squares and rectangles of carefully arranged colours on the picture, thus transforming it entirely from its original state. Occasionally, he would look up from the picture to check out the surroundings. He would sit with his back upright, his body taut with attention.

It took me a little while to realise that Sebastien was listening for the sounds of the motorcycles from neighbouring homes in this circular neighbourhood. For all the houses in this self-enclosed neighbourhood, this dirt path offered the only access to the main road. Every now and then, Sebastien would leap up from the couch, jump from the patio down to the grass, press his face against the mirror to catch the reflection of the motorcycle sputtering by, with one eye squinted in tight concentration.

At the time, I didn’t think overthink it. It was a new ritual that was associated with the villa. Up until then, Sebastien had not lived anywhere where motorcycles would be rumbling by regularly. As far as I was concerned, Sebastien was engaged in a relatively innocent ritual that wasn’t really disturbing anyone. If anything, it seemed to capture his love for motorcycles.

It was only much later that I would come to learn that Sebastien’s scurrying to the window and methodical tracking of the motorcycles was his way of managing his anxiety, his lack of control over this new environment. It was an environment where motorcycles would suddenly come out of nowhere, bringing you didn’t know whom into your space. And you couldn’t ever be sure if it might stop suddenly in front of your home and enter your space…

Once Sebastien was done with his colouring, we would move the rattan furniture to the periphery of the patio to make room for our yoga and functional training exercises. Just before seven o’clock in the morning, the cover offered by the Bali-style roof with reddish terracotta tiles shielded us from the piercing rays of the morning sun. So long as it was not windy, the roof also offered adequate protection against the rain. It was a refreshing change to be doing yoga moves like the “Sun Salutation” in front of the rice paddies, taking in the natural fresh air, and paying homage to the glory of the sun, which lit up the landscape, on the sunny days.

In the beginning, our morning routine in our idyllic stronghold would make me smile. Sebastien and I fitted the stereotypical image of wealthy and healthy yuppies who had stepped off the treadmill of the modern contemporary world to retreat into the dream life of doing yoga every morning and drinking healthy juices. It was almost as though I had launched a permanent vacation life.

My illusory bubble would burst once our exercises were completed and Rafi had shown up for the day. Then I would be reminded of all the things that I would still need to prepare before I leave Sebastien for the time on September 17th, just in time for my work commitment in Singapore. Essentially, from the time Jerome left, I had about 12 days to ensure that Rafi could step into my shoes. Thus, the “clock” was still ticking.

Moving Sebastien to Bali wasn’t a simple case of transplanting Sebastien’s homeschooling program from Singapore to Bali. We also had to reshape it to accommodate the new contextual realities. For a start, Sebastien no longer had access to functional training and dance therapies. A personal trainer who was willing to come to the home in Bali quoted me such a high price that I decided to set this issue aside for the moment. With so much for Sebastien to get used to, I wasn’t overly anxious to replicate these therapies with people he hardly knew.

Another activity that also fell by the wayside was Sebastien’s weekly movie expedition in Singapore. For many years, I had kept up with these expeditions in Singapore. In a sense, I considered Sebastien’s movie viewing to be yet another means of exposing him to alternative experiences or worlds, albeit voyeuristically, which he would otherwise not have known about.

However, the nearest movie theatre was just too far away for it to be incorporated into the routine. By choosing to place Sebastien in an environment in which his closest neighbours were at least a hundred metres away, it would take as long as 90 minutes by motorcycle to get to the areas of Bali with the sprawling shopping malls containing movie theatres. Coupled with my concern that Rafi would not be able to manage Sebastien’s behaviour in a large shopping mall, particularly one that I was also unfamiliar with, I decided that it was safer that they stayed within the village environs.

In order to replace them, I came up with new activities in Bali based on the presence of nature in Bali and the use of motorcycles as a mode of transport. Sebastien’s new life in Bali included outings to the beach, hikes in the mountains, motorcycle rides, and taking care of a larger home with a garden. Unlike our cage-sized flat in Singapore, this house, which not only had two large rooms, but also two outdoor patio areas, required a substantial effort to keep clean. This provided the opportunity for Sebastien to take care of a household seriously. I even fantasised about the possibility of Sebastien feeling such a sense of ownership of the house and the garden that he would change his ways. Instead of stripping plants of their leaves, Sebastien would be responsible for watering and trimming them. Just days after my departure, the special needs school would reopen and Sebastien would have as many as 30 to 40 new faces of students and staff to adapt to.

Next, I also had to further tweak the homeschooling programme to take into consideration Rafi’s limited ability to teach Sebastien and interact with him. As Rafi did not speak much English, I had to make a lot of adjustments to the worksheets I used to make for Sebastien. I experimented with inserting more clues and prompts so that Sebastien would not need to ask for help and producing answer sheets for Rafi, which he could just show to Sebastien. As much as possible, I didn’t want Sebastien’s interaction with Rafi to be fraught with misunderstanding. Having to make all these modifications not only increased the amount of work I had to do but also marked the start of my letting go of any expectations of Sebastien’s literacy and numeracy development. After all, academic learning had never been Sebastien’s forte. At this point, if Sebastien were no longer banging his head and acting aggressively, both Jerome and I would be more than satisfied.

There were also the minutiae of this new “edition” of Sebastien’s life, which had to be decided and fine-tuned before I left. With their language barrier, I didn’t want to run the risk of Sebastien exploding because Rafi couldn’t grasp what Sebastien wanted. Such details included the specific plates and the containers that Sebastien preferred to use for cooking — what ingredients they were supposed to hold and which utensils would be used to cook them. I even delved into the type of stationery that Sebastien used and how he preferred to position them on the work surface for the different tasks.

At the heart of my preoccupation with getting all these details delineated meticulously was my worry about Rafi. If I had been willing to be honest with myself, I was not impressed after seeing him at work within the first three days. Rafi was just looking to me to instruct him with regards to every aspect of Sebastien’s programme. Throughout the training, he asked no questions and showed little initiative. When I wasn’t training him or pointedly instructing him to observe my interaction with Sebastien, Rafi would be looking at his mobile phone.

Being a novice employer, I wasn’t actually sure how I should react. After all, I had already paid a lot of money to snag Rafi from his previous company. Back then, it had seemed like a bold strategic move. This left little room for self-doubt; so I made excuses for him and myself: I don’t want to push him too hard and frighten him. How could I expect him to learn in less than two weeks what I had been doing for the last 10 years? Admittedly, the learning curve was very steep. Apart from dealing with Sebastien’s life activities, Rafi also had to cater to Sebastien’s daily needs, as well as shop for Sebastien’s food and toiletries. Thus, I blocked out my worries with my reasonable justifications: How could I expect any more than what he was giving me now? Give Rafi some time to warm up to the job.

The truth was that everything was new to me — the incorporation of our routines in this villa, the whole new village environment, interacting with locals who didn’t speak much English, and a different culture for me. With our struggle to set up Sebastien’s life in Bali not too remote in my mind, I just saw my difficulties with Rafi as a continuation of the imperfection and complications, which would be resolved with some effort.

A case in point was the delivery of some heavy wooden furniture that we had ordered for the house. As we were living in Bali, a land of artisans, Jerome suggested that we commissioned the furniture that we needed for the home. However, since the only transport that the narrow dirt road could accommodate was a motorcycle, three workers had to carry the heavy wooden pieces — a low table and a tall shelf — one by one, on the tortuous path to the villa. Due to their size and the obstructive presence of the dining table in the dining room area, these pieces were delivered directly through my bedroom windows!

Confronted with these situations in which the local villagers overcame various obstacles without complaining about the hardships was a real eye-opener for me. In my mind, I had thought that no one in Singapore would have been willing to take on such a thankless task, certainly not without protesting ad nauseam. Instead, these locals deposited the items and went off on their merry way — it was just one day in their life. So who was I to complain about my difficulties?

Experiencing these dynamics made me feel as though I was an early pioneer breaking new ground. While this could not have been further from reality, I honestly felt strong and empowered. Every obstacle could be circumvented. Those that could not be at the moment, such as Rafi, or the mice scuttling on the roof, were things that I would grapple with along the way. It was all part and parcel of the new existence that I had taken on. The novelty somehow made everything seem okay.

Those early days were incredible. My every waking moment was filled with a sense of purpose. I felt infused by the energy of my surroundings — the way the rice paddies lit up as the sunlight hit their leafy green blades and come to life with the sudden, but elegant, flight of the white herons. Ibu Surya and the foreign residents in the area all spoke of the magic of the “Bali energy” that gave one a new lease of life. I too was sensing what they were talking about. Everything felt so intense, so intoxicating. This was the power that I had wanted to experience again after the Bali recon trip. It had pulled me back.

Thus, during this heady beginning, our existence at the villa really felt as close to heaven on earth as it possibly could. As far as I was concerned, moving Sebastien here was not just a positive step for Sebastien, but also for me. It had certainly given me some kind of a boost: I loved my “Bali self”, whoever or whatever it was.

During these early days, I hardly missed Jerome. I barely had any time or energy to miss him: there was too much to do, to experience, to process. Some of my energies were certainly consumed in getting adjusted to a village life, where my newly-awakened senses were getting attuned to the rich palette of the foliage around me — the palm trees, the frangipanis and hibiscus. Of greater novelty was the busy activity of the wildlife from the tiny ones like the dragonflies, the butterflies, and frogs to the daily visits of the nocturnal tokay, a native gecko that could grow up to 40 cm in length, whose very name evoked the sound that it made every evening, signalling its presence. Cleaning the poop off the patio, which came from the tokay that enjoyed perching under the eaves of the patio roof, was one of my less enjoyable morning rituals. The rest of the time was spent training Rafi and preparing the materials that they would need for the homeschooling programme during my absence.

So although Jerome and I tried to catch up with each other every night at around nine when Sebastien had gone to bed, I could barely keep my eyes open by then. In contrast, Jerome living in solitude was going to bed at as late as 1:30 a.m. Our urban and rural existences were diametric opposites that seemed to be erecting barriers between us. Pursuing my village life in Bali, Jerome and his life in Singapore couldn’t seem further away.

* * * * *

But there was so much more about my new life that I needed to process than my novel environs.

One day, I had a rare moment when I found myself alone in the house with no urgent activity to do, no one to instruct, and no one to ask about something. Engulfed in my preparations for this transition, I had not really registered the true extent of what I was feeling. The quiet both within and without my mind shattered the Bali edifice that I had constructed.

You see, the person I was just one week ago had operated like a mother possessed, determined to succeed on a mission that could not be allowed to fail her son. Only at that moment did I have the space and time to slow down and really reflect on it. My mind was a whirlwind of thoughts spinning out of control: Oh my god! What have I done? It has really happened: I have transplanted Sebastien to a foreign land! After looking after Sebastien by myself for 20 years, Rafi, whom I barely knew, will be taking over! Am I really going through with this heart-wrenching decision that is turning our lives upside down?

It was like waking up from a dream. The events of the past year fast-forwarding to those of the recent weeks felt so crushingly heavy that I sank down onto a dining room chair. I was shaking with sobs that were erupting out of my being, as I looked back upon the five years that had led us to the Bali solution.

But what were my tears all about? As I sat there looking at the surrounding in a state of bewilderment (Where am I? What am I doing here?), I knew that I wouldn’t be sitting in that villa in and of myself. I wouldn’t have rented a villa for Sebastien in a foreign land that I barely knew. Such an idea would have been too wild, too radical for someone like me. I also knew that if Sebastien had not fought me like a lion and had instead conformed to my dictates of behaviour, I would have sought to re-assert my control over him, as I had once done when he was a boy. Yes, if he had not continued to strike out and exploded, I would most likely have not taken this road. This was also vintage Sebastien, with his larger-than-life personality and a never-say-die determination. Despite our language barriers, he managed to get my attention and forced me to listen. It essentially took us five horrible years of fighting to arrive at “Indonesia. August.” and “Bali.”

My awakening to the momentousness of the Bali solution also brought back the memories of that day in Bandung, which seemed like a lifetime ago, when a younger Sebastien had mourned for the end of our special island holiday — his paradise lost. Back then, even though I sympathised with his heartbreak, I didn’t feel that I had the wherewithal to create a new life for Sebastien in a world that would move and change in synch with the elements of nature. Though Bali was, by no means, on par with the idyllic island holiday we enjoyed, it was a massive stride forward from the concrete jungle of Singapore. Thus, Sebastien, the young man, had managed to push me to accomplish what I had thought was impossible years ago. Even though he didn’t know where to go or how to get out of Singapore, Sebastien propelled us to Bali. The journey was circuitous, marked by unplanned detours and lots of trial and error. But ultimately, we would not have been there, if not for him.

The impossible had become possible. It was a new start, in a new place. I really wanted it to be perfect.

* * * * *

“Ughh!” That was the unmistakable high-pitched, angry yelp of Sebastien, coming from his bathroom, followed by a series of banging noises. Did he just bang his head or was he kicking the bathtub? Both Rafi and I froze in the kitchen; we were in the middle of setting out the ingredients for Sebastien to cook his dinner after his shower.

“Sebastien, are you okay?” I called out, keeping as calm as possible.

The response was a chilly silence. I remained on the spot, feeling incapable of moving. I guess I was anticipating another outburst.

After a lull, Rafi went over to the door, pressing his left ear against the slit. His eyes were alight with the excitement of a child, not fully aware of the heaviness of what had transpired. If I had not been so crestfallen about Sebastien’s first meltdown, I would have been shocked and disgusted. But I didn’t have enough energy to summon all these emotions. It just made me feel terribly alone.

After Rafi went home for the day, I stumbled distractedly out to have dinner at the nearby café — the one where Jerome and I had had our last meal together before his departure. Because of this association, this café was like an isolated outpost of familiarity for me. Amidst all that was new and changing, it was a place that almost felt like a second home to me in Bali. At this point, I hadn’t even ventured further down the main road to try out the other restaurant nearby.

I made my way upstairs, grateful that there were no other patrons. As I crumbled down on the straw mat in front of the low Japanese table, I gave way to my tears. Despite all that we had done — the setbacks we had overcome to pull this off and the sacrifices we were making, it was not good enough for Sebastien! If he were not happy, what were we doing here, hundreds of miles away from Jerome, separated into two households?

In the end, the whole evening did not disintegrate into a pity party. After getting some food, I was better able to put things into perspective. My sense of devastation had come from a place of unrealistic expectations. I had been wishing for a miracle, hoping that everything would be all right overnight just because Sebastien was living in Bali.

The whole truth of the matter was that even before tonight, there had already been signs that Sebastien was struggling with the adjustment process. In fact, since Day 2, Sebastien had kept Rafi and me busy by demanding that we fixed various “imperfections” in this house, i.e., things that he considered to require repairs.

For several mornings, as we were doing yoga on the ground of the patio, Sebastien had been eyeing the thatched roofing. Already, I could see that patches of the heavy waterproof fabric underneath the thatched roof to prevent leakage from against the rain stuck out from the periphery of the wooden rafters. This workmanship did not look like it was going to pass the quality control standards of Sebastien. So long as he wasn’t saying anything, I kept hoping that it was all in my head.

However, one afternoon, Sebastien declared, “Scissors cut”, while pointing at the ceiling towering above us. Fulfilling this request was no mean feat, as we didn’t have a ladder or a pair of strong scissors. However, by stacking up a chair on two tables, Rafi and I managed to create a makeshift “ladder”. With me supporting this slightly wobbly structure, Rafi gamely got up to a sufficient height to snip away at these errant patches with whatever scissors we had. In the meanwhile, Sebastien played the part of the “director” whose adamant “Cut” and finger-pointing at different areas dictated the direction of this operation. Thankfully, when he was satisfied at some point, not much damage had been done. I was extremely grateful that Rafi was this lean, young man who had the physical dexterity and the composure to perform the task without fearing for his well-being.

Unfortunately, Sebastien was not finished. He also insisted that hooks from the walls and shelves from his bathroom, which would have been great for hanging towels and clothes, as well as placing toiletries, be removed. As he had promised, Carlos came by readily with his tools to remove them.

Furthermore, Sebastien also pushed out pieces of furniture like chairs and a small table from his room and insisted for them to be placed in my room. As a consequence, my room became increasingly cluttered from housing most of Sebastien’s furniture.

The garden also did not escape unscathed. The lusciously red hibiscus flowers were primary targets, never to be seen again after the early days. Even the trembling pinkish-red buds, looking delicate and promising, would not be spared, nipped off by Sebastien as soon as they were sighted in his early morning “supervision”. Like a perverse gardener who was consistent in executing his atypical vision of what a garden should look like, Sebastien seemed bent on eradicating any specks that deviated from the general greenery. At some point, even the criterion of green would no longer protect a plant. The Nipa palm trees in the middle of the garden were completely stripped of their leaves. They looked strangely naked under the tropical sun, which only illuminated the abnormality of their state in striking contrast to their healthier, untouched counterparts.

Thus, each morning, as I woke up, it would seem that, little by little, what I had once conceived of as my mini-paradise became increasingly encroached upon by Sebastien’s destructive imprints. There was no longer a real space, even during the magical period of my solitude, when I could entertain my illusion that Bali was producing a miraculous effect on Sebastien. In fact, I couldn’t put my finger on what Sebastien’s agenda of stripping things away from his environment was all about or where it was going.

I didn’t really know how to react to his behaviour. Operating under a new set of realities, in which he had just been transplanted and I would soon be leaving him, I didn’t feel that I had much leeway to put my foot down. Instead, I opted to give him the space to work through whatever emotions he was experiencing to get past this transition. Furthermore, wrenched with guilt at this impending separation, I went for the easier route of acquiescing to Sebastien’s constant requests to dismantle things in the hope that, at some point, he would be done purging his negative emotions. In retrospect, I could see how much all our hectic “doing” helped divert attention from the much needed painful “feeling” that I wasn’t willing to go through.

Another factor that constrained my ability to manage Sebastien was Rafi. Although I was grateful to have an additional pair of hands, Rafi was no substitute for Jerome. At about 1.65 cm in height and slim in stature, Rafi was really no match for Sebastien, both in size and disposition. While I had initially thought that Rafi’s relaxed and laid-back disposition would be good for Sebastien, it became an irritating feature. It often seemed to take him a few seconds too long to register what I was saying before he would even begin to get going.

Moreover, the fact that I had to keep on activating him just to get him to observe and learn was fatiguing. Despite my frustration, I really didn’t know what I could reasonably expect with an employee from a foreign culture who did not speak English well and was still learning the ropes of how to work with an autistic young man. I could only wait and see.

And then there was the not so attractive part of the reality of village life. This was not something that I had thought about. Long habituated to the amenities of modern cities in the First World, I was surprised by the frequency of the electricity outages, which could last for a couple of hours or even longer at different times of the day. Sometimes, this was due to the widespread outage that affected entire neighbourhoods. In other instances, it was because the house did not have sufficient power capacity to support the simultaneous running of the shower (water pump), the fridge, and the small toaster oven.

Of course, if we weren’t living with Sebastien, I would have no issues with this situation. However, since Sebastien had always overreacted to things being broken in Singapore, I lived in a perpetual state of stress. This was another trigger factor that I had not thought about.

Finally, the Balinese’ devotion to the practice of their religion, as manifested in the omnipresence of their daily offerings — palm-leaf containers holding flowers and petals and other displays — added another element of complexity with regards to Sebastien. I didn’t know how to teach him to respect concepts of religion and cultural traditions since they were too abstract for him to grasp. All I could do was to dissuade Sebastien from sweeping aside the daily offerings disrespectfully, by highlighting that they were not garbage for the Balinese people. At times, he listened; at other times, he didn’t. On the most part, people didn’t seem to make a big deal about the state of the daily offerings after they had done their prayers.

But then one day, Sebastien did something unexpected. We didn’t see it coming. Just as we were walking towards our home, Sebastien bolted down the dirt path to the neighbour’s house and entered the compound. Knowing that I couldn’t catch up to Sebastien, I dispatched Rafi to go after Sebastien first.

By the time Rafi reached Sebastien, it was too late. Sebastien had taken off a piece of black and white checkered cloth that hung down from the grey family shrine, where offerings were made to the gods. When I arrived, we were confronted by three men staring at us. They had been building a garden wall for days. Sebastien held on tightly to the cloth and shouted insistently, “TRASH CAN! TRASH CAN!”

“Okay, okay. Put it in the trash can.” I had little choice, but to agree. To me, it would be easier for me to reason with the neighbour than with Sebastien and risk triggering a meltdown. So I told Rafi to take Sebastien home. Now it was time for damage control.

I turned to one of the men: “Do you speak English?”

One worker ran into the house. After a few tense seconds, a serene-looking young lady with a kind and gentle face stepped out from the household. She looked confused when she saw me — a stranger in her family compound.

“How can I help you?” She spoke in fluent English.

“I am so sorry. But my autistic son took away your ceremonial cloth from your family shrine and insisted on throwing it into the trashcan. I am very sorry about this. But I could pay for the new one.”

I felt utterly distraught about the situation. There was nothing I could genuinely offer, which would constitute a real apology. I knew that I couldn’t get Sebastien to return the cloth. Even if I managed to return the cloth, I couldn’t be sure that Sebastien who could see it from where we were sitting on the patio would not take it off again. In fact, I couldn’t even guarantee that Sebastien would never violate their privacy and remove their ceremonial cloth again.

Looking at me with a reserved smile, she replied, “There’s no need. It’s okay.”

“Thank you for your understanding. I am so sorry.”

Despite our exchange, I walked away from the compound, full of uncertainty. I didn’t know if I had made things right and that she really meant what she said. There was nothing stopping Sebastien from going for it once again.

I felt the weight of being caught between prevalent societal practices and Sebastien’s atypical preferences. How could I explain to this neighbour about Sebastien’s indifference and oblivion towards what was sacred and unquestioned in her society? How could I, in turn, help Sebastien to understand something as abstract as a cultural tradition?

In the end, I enlisted the help of Ibu Surya who paid a visit to the neighbour. She reassured me that they understood about Sebastien’s condition and our situation.

The next morning, as I sat cross-legged on my Kettler mat, in preparation for my meditation, I saw a lady step out from the neighbour’s house. Even from a distance, I could tell that she was older than the young lady I had spoken to. There was something tranquil in the way she was sweeping the leaves away from the front of the gate, which mesmerised me. Thus I was unprepared when she looked up and caught me looking at her by surprise. She waved several times. I waved back, making out the big smile on her face. I felt forgiven.

From that day onwards until we moved from the villa, these neighbours would wave at Sebastien with big friendly smiles every time they rode by on their motorcycle. From the couch, Sebastien would wave back at them. With them, he never scurried to the windows to look at their reflection. Back then, I didn’t ask myself why. I was just relieved that we had lovely neighbours who didn’t hate Sebastien for what he did. Looking back, I could see that they looked out for Sebastien, serving as unofficial “guardian angels” even though we never asked them to. Sebastien knew that they posed no threat.

Back then, I didn’t notice many things. I was still too preoccupied with preventing Sebastien’s meltdowns by addressing his demands and coping with the vicissitudes of village life. It was clear that life in Bali came with its own unique set of challenges.

Most of all, I was preoccupied with the biggest challenge that loomed ahead: I was about to leave Sebastien for the first time.

* * * * *

“You should do a rehearsal. You should have Rafi sleep over and see how Sebastien does.” Jerome advised during one of our night calls.

“That’s a great idea. We need to give it a trial run.”

Why didn’t I think of that?

Well, I had been really busy training Rafi by day and putting together a “package” of daytime “homework” worksheets (literacy and numeracy) and fun night-time activities (stickers, sewing, tracing, etc.) for the two weeks of my absence. To further ease Rafi’s work, I had even organised the daytime and nocturnal activities and labelled them so that he didn’t have to make any decisions about which activities to give to Sebastien on which day. To finish the package on time, I had sometimes gotten up at three or four o’clock in the morning, after hitting the sack at 9 p.m.

But now that the full package was completed, it was time for the rehearsal. The night before the rehearsal, Sebastien and I spoke about the rehearsal for the next day in the calendar. So far so good. The preliminary part of the plan — informing Sebastien about what was going to happen — was in motion.

However, later that night, when I returned from dinner, Sebastien approached me just as I closed the gate and demanded loudly, “MAMA. CARRY. SEBASTIEN.”

“Carry Sebastien?” I was buying time. My mind was vacillating between the possible answers that I could give to get out of the situation.

Sebastien was in no mood to wait. He draped his arms on my shoulders, hopped onto my back, and clamped his legs around my waist.

“But, Sebastien, you’re heavy,” I protested weakly.

“CARRY.” His voice was monotonous and unyielding.

Resigned, I braced myself for his weight. At this hour, all by myself, I didn’t think I could deal with the consequences of putting up a fight by rejecting his request. Tightening my torso and breathing steadily, I was managing on the grass. However, when I had to tackle the steps that led up to the patio, I realised that I had taken on more than I could handle. Feeling the strain in my back, I dropped him down on his feet when we made it to the top. Thankfully, Sebastien was satisfied and walked into the house.

Later on that night, I tried to shrug off the painful strain on my back. It was worth the price of averting a bruising confrontation with Sebastien. Ultimately, Sebastien couldn’t have been more direct in communicating my obligation towards him. Regardless of how heavy he was, Sebastien expected me to carry him until I couldn’t. It was the ultimate guilt trip. Although I did it, my strained back also reminded me of why I had to step away from him. I could no longer live up to Sebastien’s expectations of my obligations towards him.

The next day, I initiated my transition away from Sebastien by stepping back from interacting with Sebastien and getting Rafi to step in. When I left that evening to spend my night at the hotel in town (the same one we had stayed at before), I gave Sebastien a quick kiss and hug before heading off. He let me go without kicking up a fuss.

And this night by myself — the first time in 20 years — turned out to be far more freeing than I could ever have imagined. As I went through the motions of unpacking my computer and the power plugs to charge my devices, I was acutely aware of my aloneness. I alone was dictating what I was doing and how fast I needed to go. If I had wanted to, I could have laid down for the entire night and do absolutely nothing at all. This would have been possible. I didn’t have to think about taking care of anyone else.

In the end, I did a little bit of copy editing work for a client on my laptop, luxuriating fully in the quiet tranquillity of the hotel room. When I felt hungry, I got up and roamed the narrow side streets, deliberately bypassing the main roads with noisy motorcycles speeding by, and taking my time to pick a one-of-a-kind restaurant. I wanted this evening to be special.

And it was. After selecting a vegan restaurant, I enjoyed a hearty plate of brown rice with grilled carrots, broccoli, and peppers, in the unexpected company of an American lady I had just bumped into only days before at my neighbourhood café. What I cherished most about that night was being able to savour the little pleasures of life that I had not experienced for quite some time since all my troubles with Sebastien began. That evening gave me a taste of what freedom from Sebastien would be like.

That night, I fell asleep quickly. However, I woke up in the middle of the night, feeling utterly bewildered. Where is Sebastien? It took me a few seconds to register my surroundings and recognise that I was alone in the hotel room. I also had to remind myself that Sebastien was all right; he was being taken care of by someone else. As I sloughed off my unease, I was also elated about my impending freedom from having to worry about his every move. It was a simultaneous feeling of discomfort and excitement, which would take a while to get over.

I returned home after spending 24 hours away from the villa. Prior to my return, I had checked with Rafi who assured me that everything had gone smoothly. When I stepped into the garden, Sebastien was doing his colouring on the patio as usual. There were no signs of distress on his face.

“Hi Sebastien, it’s nice to see you!” After a night of restorative sleep, I was brimming with energy.

“Hi, mama!” He replied, without looking up, engrossed in his colouring.

* * * * *

September 17th, the day I left Sebastien for the first time in 20 years, marked a milestone in my personal life and homeschooling journey. In stepping away from my role of being Sebastien’s primary caregiver, I could take heart in the fact that he had grown up to be a sufficiently independent individual who was capable of taking care of his own needs and the household with limited supervision. In spite of his struggles with living in a world that could not understand him and his own demons, Sebastien had demonstrated a fiery spirit that made me believe that he could live independently.

Thus, in a sense, one could say that Sebastien had graduated from our “homeschooling academy”. But, there were no graduation caps and gowns, no certificates of completion, no inspiring speeches, no applause from supportive audiences of family and friends. Instead, I would be leaving Sebastien, with as little fanfare as possible. In fact, it was of the utmost importance for me to make it a non-event. I wanted it to feel like an ordinary day.

Nonetheless, when the moment that I had replayed countless times in my mind arrived, I struggled to suppress the tears as I picked up my backpack to follow on the heels of the driver carrying my suitcase. Sebastien was the one who looked stoic as he walked me to the gate.

I hugged him, managing to say, “Bye bye, Sebastien. I love you.”

He said nothing.

Once I reached the airport, I had recovered from my sadness. I was relishing the feeling of not having to look out for Sebastien, wondering what he was up to, or staying by his side. It felt incredibly light, a carefree lightness that was exhilarating, both because of its sensation, but also the novelty. It had been quite some time since I had felt this way.

However, this lightness was also disturbing. As I headed toward the gate, I couldn’t shrug off this feeling that I had left a vital part of me behind.

I couldn’t put my finger on it for a few seconds. For it wasn’t a backpack, a handbag, or even a passport.

It was a piece of my heart.