Week 17 of Serialization of Where Does My Autistic Son Belong? Chapter 17 The First 7 Days (Aug 27–Sep 4, 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 17
THE FIRST SEVEN DAYS
(August 27th — September 4th, 2016)
In my mind, all I can remember about our moments of leaving for Bali is captured in snapshots. There were the “wefies” of the three of us sitting at the departure gate area, with each of us taking turns hitting the click button. We sported relaxed faces and even smiles — perfect masks that concealed the tumultuous emotions we suppressed deep down inside.
But the most memorable photo of all is the quick one that I took of Jerome cradling Sebastien in his lap, while we were on the aeroplane. Both of them were lost in the oblivion of sleep.
With Jerome’s head bent over Sebastien who had snuggled cosily against Jerome’s torso, this image was the ultimate representation of love between parent and child. Except that Jerome was not Sebastien’s biological father. He started out being a stranger who had fearlessly entered our life nine years ago, even though he knew that I had an autistic son, instead of fleeing the other direction. For some inexplicable reason, everything about us, which would have made a man run the other way, had only pulled Jerome tighter into our orbit. Thus, unbelievably, through all the hardships that we had experienced together, we had become a family unit.
This was the beautiful family life that we were giving up by moving Sebastien to Bali. Despite the abundance of love, it hadn’t been good enough for us to keep this family intact.
* * * * *
At the airport, I got worried when I couldn’t see Adi. He was supposed to meet us there with the driver. Suddenly, a little bespectacled man waving his hand excitedly above the crowd of people caught my eye. Oh my God, is that Adi? I had thought that he would be a lot taller and stouter. In my excitement about his ability to speak English, I had failed to ask the question about his physique, which I had posed to all the other interviewees.
And when Sebastien stood next to Adi and towered over him by a head, I was immediately concerned that Adi lacked the physical and the presence to be able to handle Sebastien. However, the man was already here; he had left his family behind to take on this job in good faith. And we were here, with all of Sebastien’s life belongings in two suitcases. We had to give this a shot.
Moreover, we didn’t have a lot of time to explore the Bali option. With Jerome heading back to work in just one week, we had precious little time to make sure that we could set up a home for Sebastien. Thus, the most urgent situation was for Jerome and me to check out the three prospective houses that we had narrowed down from our Internet search and Adi’s visits.
As checking out prospective houses could be confusing and stressful for Sebastien, we didn’t want to drag Sebastien along with us to visit them. Adi was immediately put to the test in a “sink and swim” situation. Could Adi take care of Sebastien on his own in the public space for about three hours, while we went house-hunting?
With so little time on the clock, we were simultaneously assessing the viability of two aspects of the Bali solution.
Well, things went south with both aspects within the first two days of our arrival! None of the three houses we prospected turned out to be viable. A highly affordable, but barely furnished, house was constructed in such a new area that the Internet was still not available. At that time, as Sebastien was still an avid user of the iPad, having a reliable Internet was a pre-requisite.
The second house, considerably more expensive and smaller, with a landscaped garden, was located near the main road with noisy traffic. We were worried about Sebastien’s safety: there were no enclosures that could prevent him from running out to the main street and hurting himself.
The last house — a lavish traditional Balinese villa with a humongous garden and pavilions, as well as tall gates — could have been ideal except for the fact that it was not available until October. We couldn’t afford to wait that long. At any rate, this beautiful, though old, house featured many wooden windows and cupboards with sticky latches that there were too many potential things for Sebastien to break. Thus, I didn’t feel too badly about its unavailability, even though it was our final option.
Even more disturbing was Adi’s interaction with Sebastien. His job was to take Sebastien on an outing with a motorcycle, on which Sebastien loved riding, to a quiet place in nature and have a picnic with Sebastien’s favourite food items that we had already packed in the backpack. We also gave Adi some extra money to cover any additional purchases.
On the first day, Adi returned with Sebastien, his face taut with tension and his lips pursed. I could tell that he was holding back the torrent of words that would otherwise have poured out. At my insistence, Adi revealed that Sebastien had removed a large sticker from a boat parked on the beach when they were picnicking there. Adi had had to explain to the furious boat owners about Sebastien.
Naturally, I was disappointed that Sebastien was persisting in his poor behaviour in Bali. I had hoped that perhaps, Sebastien’s conduct would transform overnight because he was happy about moving to Bali; after all, Bali had been his choice. Unfortunately, this was clearly not the case.
Since I couldn’t change Sebastien’s behaviour so quickly, it then boiled down to Adi to be a carer who could deal with these troublesome situations with Sebastien without getting so easily flustered. However, it was evident that Adi was appalled by Sebastien’s behaviour. Perhaps, he was even reacting like a “father” who was mortified at his “son’s” behaviour. His sons, I was sure, had never been so challenging. Thus, Adi was not at all prepared for what a “public relations nightmare” Sebastien would be.
Adi’s reaction put us in a terrible position. After just one day with Sebastien, he looked just as stressed out as I did after five years of coping with Sebastien, the young man. How could he possibly last the distance of looking after Sebastien if he had to do this, day in and day out?
It felt like Santa Rosa all over again. The male carer — the critical piece of the overseas option — was not working out. Still, we couldn’t just call things off after one day. After all, we were already here in Bali. Our suitcases were packed with Sebastien’s belongings. Sebastien was fully expecting to live in Bali. We had to give Adi another chance.
But the outing the next day did not improve; in fact, it was worse than the day before. In the middle of our frustrating house search, I received a hysterical phone call from Adi: “I don’t know what to do! Sebastien… he just go to take Sprite from the fridge! Why Sebastien do this?”
“Okay, okay… Did you pay for it? We gave you money, right.” I could hardly believe my ears. Adi sounded out of control on the other end of the line. This was something that we had encountered before and we would just pay for it, even if we were just two steps behind.
“Yes, I pay. But Sebastien sat down to drink the Sprite. Then he don’t leave. So I had to order some food. Then Sebastien not want to eat. I don’t understand why Sebastien do this.”
Adi seemed so confused and confounded by Sebastien’s every move that he was unable to think clearly. In the face of Adi’s hysteria that sounded disproportionate to what he was reporting about Sebastien’s behaviour, I felt the need to keep my cool for the two of us. Nonetheless, I did think that it was curious why Sebastien would sit down at the restaurant table after getting his Sprite if Adi had not sat down himself.
That was when I checked the time. It was already 2:30 in the afternoon. Sebastien should have already eaten the food in his backpack. But what if Adi had not given Sebastien his food? This could explain Sebastien’s actions as his way of saying that he was hungry. It seemed ridiculous that Adi had forgotten such an obvious thing; but, just to rule it out, I thought I should ask.
“Have you given Sebastien the food in his backpack?”
After a long silence, Adi replied, “No.”
Now, it was my turn to get hysterical: “Why are you not feeding him? Of course, he is sitting at a restaurant. He is telling you that he is hungry.”
There was yet another stretch of silence. Then Adi shouted back at me: “Okay!” He hung up immediately. I was appalled. What has happened to the mature, middle-aged man whom I had thought would be perfect for taking care of Sebastien?
Just when things couldn’t get any worse, it did.
For their next outing on their own together, we suggested that Adi take Sebastien to the black sand beach from our previous trip. As Sebastien had really enjoyed the beach during the recon trip, we were really hoping that Adi and Sebastien could finally have a good day together. This would give a jumpstart to my flat-lining confidence in the whole Bali option.
To my dismay, Adi called with another piece of bad news that day. A lifeguard from a nearby resort had demanded that Sebastien leave the water or he would summon the police. Even though Sebastien was merely standing at the periphery of the ocean, recognising that the waves were too big for him to enter, the lifeguard was insistent. So after just playing in the water for 10 minutes, Sebastien had to leave. I could not believe my ears. How wrong can this trip be going?
Jerome and I rushed to the beach, worried that Sebastien might have a meltdown after being brought to his favourite beach and pulled out within minutes. When we got there, Sebastien was sitting calmly at a nearby deserted surfing shack doing stickers. While Jerome spoke to Adi, I sought out the lifeguard. I was determined to help Sebastien get back into the water. But the lifeguard was intransigent, insisting someone like Sebastien should not be allowed to go into the water. The reality was that Sebastien was incredibly savvy at reading waves and erred on the side of caution. But the lifeguard wasn’t willing to see Sebastien through any other lenses than those of discrimination and ignorance.
It was infuriating to have travelled all this distance with the intention of transplanting Sebastien only to find myself banging my fists against the wall of discrimination. All my frustration about the trip boiled over and I found myself trembling with rage and yelling in vain at the lifeguard. I was clenching my fists so tightly so that I would not hit out at the smug face of the lifeguard.
There was nothing else I could do but to return defeated to Sebastien. However, with the adrenaline from arguing with the lifeguard still coursing through my veins, I wasn’t afraid to tell Sebastien about how badly the Bali option was going. At this point, I didn’t care that he might attack me. It would have been safer for me to wait for Jerome. Jerome was still deep in conversation with Adi; his body was turned away from us. But I didn’t want to wait till I had Jerome by my side. I wanted to break the terrible news to Sebastien so that I could get this horrible day and trip over with. Very likely, there was a part of me, which would not have minded Sebastien lashing his frustration out at me. After all, I had taken him on a wild goose chase to different destinations and they had all ended with dashed expectations. Worst of all, this time, he had really wanted it.
Throughout all these goings-on, Sebastien had remained seated in the exact same spot where we had first found him. He was still placing stickers on a piece of paper, seemingly to transcend all the drama swirling around him. I walked over to him to deliver the bad news, deciding to stand and keeping more than an arm’s length from him just in case I needed to bolt. I really didn’t know how he would react to this piece of bad news. For him, it could have been an 11 on a seismic scale of 1–10.
“Sebastien. I’m very sorry. We have so many problems here in Bali. We have no house, no Internet, no beach. We’ll have to go back to Singapore. Do you understand?” I blurted out all this information and justifications at a go. It was a simple summation of our bleak and hopeless situation that belied all the time, effort, and money expended.
I braced myself for Sebastien’s explosion. I took a quick glance at Jerome. His back was still turned away from us. He had no idea what I had done. I still did not alert him; my eyes and all my attention were on Sebastien.
There was a slight lull. Sebastien paused for a moment from his sticker activity, looked up at me with a steady gaze, and said placidly, “Bali.”
I thought, perhaps he didn’t understand me. So I repeated myself. The same thing happened. With the same composure, he repeated, “Bali.” Then he resumed his sticker activity. As far as he was concerned, it was the end of the discussion.
Since his adolescence, I had never seen Sebastien behave in as calm a fashion as he did that day, in the face of so much that was going wrong. Even as I look back on that day, I am still awestruck by how Sebastien managed to summon the serenity and composure to hold it together at a breaking point of the Bali option. Had he lost it completely at that moment, we might have headed down an entirely different path.
Instead, Sebastien behaved with the maturity that he had displayed during his younger years like that time when I had gotten overwhelmed by my launching of a small learning programme for autistic kids at a neighbourhood centre. As we were walking out for lunch in the neighbourhood, I sank down on the edge of the sidewalk, exhausted from all the preparations I had been doing. Sebastien, who was just nine years old at the time, gave me a few seconds, before speaking to me in a commanding voice: “Get up.” At the same time, he held out his little hand to pull me up. That day, 12 years later, it seemed as though he was giving me the boost I needed to make what seemed impossible at that moment happen with “Bali”.
Nonetheless, Jerome and I were still clueless about how to turn the situation around. We needed some space and time to think and discuss our options. After sending Adi back to his homestay for the day, we managed to find another beach nearby for Sebastien. Away from the resort, this beach frequented by the locals was considerably dirtier and more crowded than the other one. But it had a lively and jovial atmosphere with families and groupings of happy and relaxed men and women of different ages, including vendors, chatting away, eating, or playing in the water. Sebastien busied himself with picking garbage, which was met with curious stares of bemusement and attempts to query me about his relationship to me. From their approving smiles and upraised thumbs, I gathered that they were more appreciative of Sebastien’s garbage-picking than put off by it.
Grateful that Sebastien was busily engaged with retrieving the pieces of garbage, I sat on the sand in a state of defeat, with my arms wrapped around my calves and my chin resting on the top of my knees. It was my little child pose — I couldn’t have felt more lost at sea and vulnerable. The Bali option was tanking — we had no house, no nature, and a carer who had not proven capable of looking after Sebastien. The déjà vu feeling of Santa Rosa was returning. Surrounded by the locals, I wanted desperately to go home and get back to all that was familiar to me.
Stay calm, I reminded myself. After being hysterical with the lifeguard, I wanted to make sure that I was making a decision with a clear mind. Turning to Jerome, who was seated next to me, we initiated a discussion of different alternatives. With the Bali option not looking good, I explored the scenario of returning to Singapore with Sebastien and Adi as a helper. In my mind, I visualised what I needed to do to train Adi to go through our homeschooling routines with Sebastien. Perhaps, with an extra pair of helping hands on, I could better cope with raising Sebastien, the young man.
However, hiring Adi in conformity with the regulations of the Singapore government was likely to be accompanied by some complexity, as most helpers were female in Singapore. Furthermore, we would have had to fork out a larger amount than his salary in Bali, as the Singapore government would take a significant proportion, in order to make his move worthwhile. And we would be back, living in the same environment with many potential triggers, without knowing how Adi could cope with the situation. I would still remain the principal target of Sebastien’s aggression. Our outside-the-box solution about bringing Adi to Singapore didn’t make sense. We might as well just go back to Singapore and return to Square 1.
Although returning would not be an unfamiliar situation, what was different about this time was that Sebastien did not want to go back. He wanted to stay.
Suddenly, out of the blue, my mind cleared. It was a “Eureka” moment. In my mind, I was convinced that all our talk about returning to Singapore with Sebastien was totally unacceptable. The words that came out of my mouth next, in an uninterrupted stream, really seemed to have come out of nowhere: “No. We will not bring Sebastien back to Singapore. It would not be fair to Sebastien. He had been nothing, but courageous, patient, and gracious, under the most difficult of circumstances, with us.”
Jerome nodded, “Okay… But how can he stay in Bali?”
The answer somehow materialised at the tip of my tongue even before I had registered it in my mind: “Instead of going for a three-bedroom house elsewhere, we should settle for a two-bedroom house closer to the special needs school.”
Up until then, the school had been the only saving grace of our trip. After two worrisome days of leaving Sebastien under the solitary care of Adi, we had a welcome reprieve when we dropped Sebastien off at the school on Monday to the warm and confident reception of Ibu Surya and Martina. As it was a five-hour school day, I had placed various worksheets, colouring activities, and the Word Search book, in Sebastien’s backpack, as well as his food bag, in his backpack. I had thought that I might have to stay for a bit to issue some instructions and explain about the activities in the backpack. However, Ibu Surya and Martina had shooed us off with reassuring smiles that they knew what to do and Sebastien would be fine. Although I couldn’t help feeling worried about leaving Sebastien at a completely unfamiliar school for the first time with a huge group of strangers, it also felt liberating just to hand over his care to others.
At the end of our fruitless day with the house search, we were slightly nervous about how Sebastien would do on his first day. But we were pleasantly surprised. It was Ibu Surya who stepped out first to greet us with a radiant smile on her face. In a tone of formality, she asserted, “Sebastien was very good today. He did activities with the other students. They baked a cake this afternoon. I am very pleased with his performance. All the teachers and students really like him.” There was something in the solemnness of her demeanour, which made me stifle my incredulity. For Jerome and I almost burst out in laughter. Both Jerome and I both admitted to each other later that the very same thought had flashed in our minds when we heard her words: “Are you talking about our Sebastien?”
Even Adi was smiling away, nodding his head with pride at Ibu Surya’s report of Sebastien’s performance. Ibu Surya and Martina were full of praise for Adi: they were bowled over by his genuine enthusiasm for learning about autism and love for the students. Their reaction towards him validated my initial impression of Adi back when he was in Jakarta. It was clear that under their guidance, within the embrace of other teachers and staff members, Adi would shine. Unfortunately, the school only ran three days a week. Adi would still have to stand on his own two feet for the rest of the days.
Thus, Adi was still the weakest link that could derail the Bali solution. But I wasn’t going to let him stand in my way. Galvanised by an action plan, the cogs of the wheels in my mind were spinning like mad on our drive back from the beach to the hotel. I was on a problem-solving roll. I thought very hard about what to do with Adi. There was no question that he was a good-hearted man who possessed the passion and potential to be a good carer for Sebastien. Unfortunately, he was thrust in a situation in which time was not his side. I didn’t have the luxury to wait for him to improve and become calmer. However hard I tried, I just couldn’t fathom how we could make this arrangement work. As Bali was utterly foreign and unfamiliar to me, I needed Sebastien’s carer to be a stable partner who could help me to navigate through the landscape. Instead, what I had in Adi was a stressed-out foreigner, out of his depths in a new land, who was losing his cool in taking care of Sebastien and interacting with the locals.
We needed to have a backup plan. But what alternative did I have?
How about Rafi? Rafi was the young man who had spoken the most English among all the nursing applicants at the first interview arranged by the old folks’ home. We had already been WhatsApping with one another, as Rafi was supposed to work on Sundays during his off-day from work, thus giving Adi a break one day a week.
However, the situation had changed. With the clock ticking and knowing no one else in Bali, I sent a WhatsApp message to Rafi with the proposition that he quit his job and work for us instead. He suggested that we meet up the next night.
Yes! The Bali option was coming back to life!
Even though I didn’t punch my fists in the air, I certainly felt that way inside.
I was on a problem-solving high: there seemed to no obstacle that was too hard for me to move out of my way. So much adrenaline was coursing through my veins that I was bouncing on the seat of the car.
In retrospect, I could see the hand of Sebastien in all my strategies and manoeuvres. This was the motivating force of Sebastien. Ever since he had entered my life, Sebastien has been a formidable force of inspiration to drive me towards making bold decisions and take leaps of faith. You see, the Bali solution had to happen. There was no other option. It was what Sebastien had graciously requested.
* * * * *
The reboot of the Bali solution could not have started on a better note. After contacting the owners of three houses near the special needs school, which were within our budget range, that very night, Jerome and I got a response from one of the landlords almost immediately. We set up an appointment to check out the cottage-like villa that was nestled in the midst of verdant rice paddies glowing under the sun. It was hard to believe that, just hours before, we were on the brink of giving up on the Bali solution.
The tides were turning… It was August 31st. We still had time to make sure that everything was in place before Jerome’s departure on the morning of September 5th.
The next day, after dropping Sebastien off at the school, our driver took us to the meeting spot on the main road — a vegan restaurant featuring fresh juices and smoothies, apart from vegetarian versions of Indonesian dishes. Carlos, the landlord from Spain, pulled up alongside the restaurant, on a motorcycle, in a matter of seconds. He was wearing no helmet on his tanned and cleanly-shaven head, just a loose T-shirt and shorts, as well as a pair of flip-flops. He looked like someone who had become accustomed to living life in the outdoors and hastily-arranged meetings.
We exchanged perfunctory greetings. “Follow me,” he grunted with a no-nonsense attitude and led us down a bumpy asphalt road that dipped steeply onto a narrow path, with barely enough room for two people to walk side by side. This mostly dirt path that alternated with broken fragments of what had once been a concrete pavement was flanked by narrow streams that separated the path from the brownish pools where the rice paddies were weeks before. Ahead of us, an old man shooed a gaggle of ducks marching in formation into the muddy pools.
You may be wondering why I am dwelling on the description of this path. This is because the path would always remain the most prominent thing about this villa. I was focusing all my attention on it in order not to lose my footing. For an urban inhabitant like me who was far more habituated to flat concrete pavements and the asphalt roads, this undulating path with an uneven surface was a veritable challenge. Although I wanted to maintain the momentum of my positive spirit, I was hoping that we wouldn’t have to walk for much longer. It was hard to imagine having to take this path day in and day out. At that point, I hadn’t even begun to conceptualise what a logistical challenge it would be to move large and heavy things, which typically entailed using a car, in and out of the house. But it was impossible to bring a car onto this narrow path.
Nonetheless, Carlos, with his lean and taut figure, moved along adroitly with his flip-flops, hardly breaking a sweat. I had to run a little just to keep up with him and Jerome who was doing a far better job of following Carlos. Thus, I was relieved when Carlos turned off the dirt path and headed up a concrete pathway to a small gate. This was the house in the photo! By the time we entered the little gate and walked up to the spacious, sheltered patio, with its inviting rattan furniture, overlooking the vestiges of rice paddies that stretched unobstructed for a distance towards the horizons, I had already decided we had found the house.
“Oh yeah, you are not seeing it at a good time. In a few more weeks, they will be planting the rice again. Then it will look like the photos.” Carlos’ rough, Spanish-accented voice broke into my reverie.
“Ok,” I mumbled. At that point, I didn’t want to reveal how seduced I was by this quintessential image of a village. The next neighbour’s house that was within view was about 100 metres away. All you could notice was the activity and the sounds of the birds and the insects weaving in and out the trees and the plants. In my mind, it was like a dream house for Sebastien.
I was glad that Jerome was there. He was far more practical, as he examined the furniture, the fixtures, and posed questions about the electricity. I came back down to earth when I noticed the old wooden cupboards and windows, suffering from the wear and tear of time and the elements. They all needed some effort before they could be closed or locked properly. The power supply wattage of the house was perhaps about half the capacity that was required to run all the appliances in the house at the same time, including those that I would have to buy.
As we dwelled on these details, I began to worry about things not working or falling apart — all potential triggers of Sebastien’s meltdowns. I didn’t want Bali to be a repeat of Singapore all over again. Here was a house that contained more than quite a few elements that needed to be improved.
“Um… we have an autistic son who will be living here. He needs things to be working properly, or he will go ballistic.”
I said this on purpose to see whether Carlos would flinch or turn tail on us.
But none of this happened. Looking steadily at me with his intense dark brown eyes, Carlos shrugged off my concerns: “There’s no problem. I was an engineer before. I built everything in this house and I can fix everything. I live nearby. If anything is broken, or you want to increase the power wattage, you let me know. It’s no trouble.”
“Oh ok. Wow, that’s great.” I looked at Jerome, checking to see what he thought of all this. It did sound too good to be true. While Carlos wasn’t exactly Jimmy, his availability was much appreciated. I didn’t want to keep on nitpicking about all the nitty-gritty imperfections of the house. After all the difficulties we had encountered, Carlos was making everything sound easy and straightforward. This was a welcome change.
After the visit, we strode out to the patio. I settled comfortably on the couch next to Jerome, with Carlos sitting opposing us on the rattan divan. It was time to make a decision. For a few seconds, I luxuriated in the rays of the sun. Once again, I had entered the space of bucolic bliss. This was a no-brainer for me: this house was an adorable little villa that I just couldn’t pass up. Looking over to Jerome with raised eyebrows, we both nodded our head quietly.
“We would like to rent it. Is it month-by-month?” At this point, after interacting with a few landlords, we were aware that people rented out properties on a monthly or yearly basis, the latter at a slightly discounted rate.
“You can do that. But I want to warn you that I already have Russians clients who are planning to stay for one month in December. They stayed here before and really liked it. So if you rent month by month, you will have to leave in three months.”
When Jerome and I had plunged into a reboot of our original idea, we thought that we would adopt a “go-with-the-flow” attitude so that we would not be putting too much pressure on ourselves about the Bali solution. Therefore, if anything went awry, we could leave Bali at any moment. Or at least that was how Jerome and I had wanted to see it as we thought about executing this stopgap plan.
However, with Carlos bringing up the possibility that we would be forced to move Sebastien within the space of just three months, we realised that we didn’t have the option of “seeing how things go”. We would just have to take a leap of faith and see where the Bali solution took us. It was a serious one-year commitment.
I looked over at Jerome, seeking some reassurance. He shrugged and looked at me, “It’s up to you.”
“Okay, we’ll rent it for a year.” I had taken the leap into the unknown. There was no turning back now.
With the same no-nonsense demeanour, Carlos whipped out a folded contract from the back pocket of his baggy shorts. I skimmed over the details and we both signed.
“I will do the paperwork and get the local stamps you need to make the contract official. Here is my bank account information. Let me know when you have paid. You can move in within two days.”
We all shook hands. Wow, it was done. House, check. The first crucial piece of the Bali solution had fallen into place.
* * * * *
By the time we met Rafi, I had already decided to let Adi go. It wasn’t an easy decision. After all, there was no knowing whether Rafi would actually come through for us. However, Adi’s brief time with Sebastien and us had offered abundant proof that Adi was not cut out to handle Sebastien on his own. What made this decision so hard was that I knew that Adi cared about Sebastien and the work. Unfortunately, at this stage of his understanding of Sebastien and autism, his passion and commitment often led to an over-emotional reaction to the situation. We had no choice, but to fire him and send him back to his family. I didn’t want to keep a carer who would only be adding to my burden. Every nerve and fibre of being was certain of this.
Of course, I knew that my decision had put me in a dangerous position of having no carers at all. In fact, now that we had paid for a villa for one year, I had really cornered myself into a risky situation.
Thus, I had all my hopes riding on this meeting with Rafi. That night, he showed up with his mother. Although I was slightly surprised that a grown man would come to a job interview with his mother, I was somewhat touched by this family-oriented approach. In fact, juxtaposed next to his mother who was dressed conservatively with her head wrapped in a white hijab and her face lightly made up, Rafi looked like a well-brought-up and proper young man in his white-collared shirt and blue jeans, as well as his tidily-combed wavy hair. They even came bearing gifts for Sebastien — two carton boxes, one containing a chocolate cake and the other strawberry ice cream.
The meeting was off to a good start. Greeting us warmly with a cheerful “hello” and an affable smile, while introducing his mother, Rafi appeared to be keen about this job. However, when I explained my need for an urgent answer, bluntly asking for a “Yes” or “No” response, Rafi wavered, looking at his mother. It was frustrating. Time was of the essence: I needed to know whether we should be moving on from Rafi and finding someone else.
In the end, it was Rafi’s mother who broke the impasse by presenting Rafi’s position in extremely fluent English. Speaking slowly and choosing her words with care, Rafi’s mother explained, “Rafi is interested in the position, but he is not confident that he can do it.”
“I understand. But is he willing to try?”
We both looked at him. He nodded his head but lowered his eyes immediately. This interview was turning out to be very strange.
“There is also another problem. He also has a job with a contract that only ends this year. If the contract is terminated before the end of the year, Rafi would have to pay based on the number of days left.”
Without skipping a beat, I blurted out, “That’s not a problem. We can pay. Rafi has to let me know whether he wants to take this job.”
I could feel as though my body was ready to leap across the table to extract an answer from him. Thankfully, the composed presence of Jerome and Rafi’s mother kept me planted firmly in my seat.
“Yes. It’s up to him.” She looked over at him. However, Rafi remained non-committal: an enigmatic smile played upon his lips and his eyes were gazing down at the palm of his hands. I looked at Rafi’s mother. She gave me a resigned smile that seemed to say “I have done all that I can”. Of course, she was right. Despite my intense efforts to get a definitive answer, all I managed to extract from Rafi was a promise that he would contact us by the end of the next day. There would be no peace of mind for me yet.
However, by nightfall, there was still no answer from Rafi. Now that we had the house, I had to be prepared to live in that house with no carer helping me out. Essentially, it was the equivalent of living in my flat in Singapore, except that this time around, Jerome was not just a phone call away.
That night, I could barely sleep.
* * * * *
It was September 2nd. Despite not getting any shuteye, I awoke at the crack of dawn, some time before six o’clock. Not wanting to wake up Jerome and Sebastien, who were still asleep, I stepped out onto the balcony and sat down on a wooden bench. As a city inhabitant used to sleeping after midnight, I considered myself to be more of a night owl than a morning person. It had been quite some time since I had caught the sunrise, except for the occasional holidays, when we were catching the sun rising over breathtaking tourist attractions like Mount Bromo in Indonesia.
However, there I was, wide awake, inhaling the morning freshness and watching birds of different sizes and hues fluttering their wings in the air and disappearing into the dense foliage before me. It was the second time that we had stayed at this hotel. It would never cease to amaze me how this place, just a stone’s throw away from a traffic-infested road in the heart of the tourist centre, could offer its guests a hideaway in the middle of the forest. Amidst the ups and downs of all that we had gone through these past few days, I believe that these moments of solitude and inactivity — when everything was suspended in time and space — provided me with the quiet strength to keep going.
Soon after, Jerome woke up and took a picture of me, thus immortalising the dreamy backdrop — the trees, the leaves, and the dangling vines of the forest, along with the winged creatures in mid-flight — all bathed in the gentle light of the awakening day. In the photo, I, with my face touched by the golden glow of the early sun, looked lost in my thoughts.
Even though I knew that Jerome was aiming the camera at me, I did not turn to face the camera or strike a pose. And he didn’t ask me. After toiling so much for the Bali solution, I wanted to immerse in the moments of reprieve. You see, I was waiting… waiting for the soft hues of dawn to give way to the brighter morning light signalling the arrival of an appropriate hour to contact Rafi.
Finally, the light turned a bright golden yellow. I looked at the phone: it was 7 o’clock. In Indonesia, where the sun rose and set earlier than Singapore by at least a good hour, I reckoned that Rafi would already be up. So I sent a WhatsApp message to him. He replied immediately: he was sorry that he couldn’t work for me. The payment to his company to compensate for his early termination of the contract worked out to approximately SGD1,500. He had assumed that the amount was too high for me to pay.
Well, in normal circumstances, I certainly wouldn’t have forked out such a massive sum of money. Similarly, I wouldn’t have put down one year’s worth of rental for a villa in Bali. However, these were hardly normal times. There was no price that I could have placed on my desperation at that point. In fact, I could barely recognise the “me” who seemed to be throwing money at problems and solving them, without batting an eyelid, as though I had heaps to spare.
No, these were hardly normal times. I was about to transplant my son to a foreign country.
Without even checking with Jerome, I told Rafi that I would pay the compensation. I had been worried that any hesitation on my part would lead him to change his mind. And when I told Jerome what I had done, he just shrugged: “What choice did we have?”
The final piece of the Bali picture was in place!
* * * * *
With all our energies spent on resolving all these practical problems, we had hardly spent any time together with Sebastien. So instead of moving ahead to furnish the house, we decided to take a day off as a family. The plan would be to get the household supplies for the villa the next day and do the final move-in then; Rafi would come by to help look after Sebastien that day. Jerome would then leave the very next morning, as planned.
Despite our setbacks, everything was still on schedule.
On our family day, after searching in vain for a beach on a map with our driver, we stumbled upon an isolated beach with crashing waves, black sand, and a handful of local fishermen standing calf-deep in the waters with their fishing rods. There was not a single tourist in sight. As the countdown began towards Sebastien’s new life, it was nice that we could spend some time together without having to worry about Sebastien’s behaviour. This was the isolated nature of Bali, which I had sought for Sebastien. Jerome and I stood close to the shore, cherishing the sight of Sebastien jumping in the waves and lounging back on his elbows in the shallow depths. From time to time, his face would crinkle up as he broke out in gurgling laughter.
After all the hardships we had gone through, this day off at the beach was a perfect celebration of what we had accomplished. I was glad that we spent some family time together. This remote beach was also an unexpected find! Though it was a lot further away from Sebastien’s home, it could serve as a replacement for the other black sand beach.
The day couldn’t have been better! Or so we thought…
On the way back in the car, Jerome and I bombarded Sebastien with variations of “Did you have fun today?” We had asked Sebastien repeatedly because he had not answered. As he had smiled often throughout his day at the beach, both Jerome and I were perturbed by his reticence. Something was wrong.
Of course, in retrospect, I could recognise that our insistent request for Sebastien to answer us was all about making us feel better. Jerome and I had wanted Sebastien to pat us on the back for fulfilling our objective of having a happy family day before he embarked on his new life so that we could feel less guilty. Happy family day, check. Feel less guilty about leaving Sebastien… Nope, Sebastien was not about to give us the validation we sought. Far from it.
Just before we arrived back at the hotel, Sebastien’s mood had turned so dark and heavy that it permeated the atmosphere in the car. It certainly shut us up. Something was clearly wrong with Sebastien; Jerome and I braced ourselves for a meltdown. This was not the ending to the happy family day I had wanted. But this was life with Sebastien. Still, after the week that we had had in Bali, having to then grapple with Sebastien’s mercurial mood felt like almost too much to take.
I took a deep breath. We can do this. It has not been an easy week for anyone, Sebastien included.
Once we got into the hotel room, Sebastien collapsed on the big round rattan sofa with a bright orange cushion, large enough to hold two people comfortably. Its brightness was darkened by Sebastien’s sombre demeanour and listless attitude. Jerome and I considered different possibilities to account for this dramatic change in his mood so that we could do something about it. Maybe he’s ill: he could have drunk seawater or the tap water and gotten sick. Perhaps, he is hungry. We offered him a snack. Although he took the cookie, he nibbled at it without much enthusiasm.
As each minute passed, Sebastien’s mood did not improve. It was not a good sign. With Jerome leaving imminently, I wondered whether I had enough reserves to deal with Sebastien’s meltdowns.
Emboldened by all that I had done during this trip, I entered the “lion’s den” and lay down next to Sebastien, whispering in his ears, “What’s wrong, Sebastien? Are you okay?” There was no response. But Sebastien began pressing down on his head. Uh oh, this does not bode well. I quickly raised myself to a more upright position, ready to jump off from the sofa if needed. Jerome moved closer to the sofa. The two of us had become so accustomed to potential meltdowns that we would react without needing to exchange any words.
Suddenly, Sebastien pulled me towards him with so much force that I found myself hovering directly over him in a kneeling position. At the same time, he had wrapped his strong legs around my lower back. With his limbs, he rocked me forwards and backwards at a powerful and steady pace. Occasionally, he would even swing his legs onto my shoulders. Thanks to what little I had experienced from the BJJ class, being locked in this position wasn’t at all scary or intimidating. What was different was that all this time, Sebastien was emitting loud howls that sounded wistful, though they were accompanied by no tears, just this onslaught of activity.
As Sebastien rocked my torso harder and harder, and faster and faster, I could feel myself being shaken to the bones. Jerome inched closer to the sofa. Do you need help? His bespectacled eyes asked calmly. I shook my head very slightly; I couldn’t move my head more prominently.
Although it hadn’t been easy to cope with this relentless rocking motion, which lasted for a good 15–20 minutes, I didn’t have the heart to interrupt Sebastien. So I hung on to my calmness for dear life, perhaps like a rodeo cowboy endeavouring to remain on a bucking horse. I could sense that Sebastien was communicating something profound within him — what he felt inside. Even though I could not understand its meaning, I knew that it had something to do with the move. For this was the first time that Sebastien had expressed himself to me in such an intense and intimate manner without resorting to aggression. Setting up a brand new life for Sebastien, in which he would be weaned away from me, was not going to be easy.
All of a sudden, Sebastien unclasped his legs around me and got up abruptly, as though nothing had happened. He was ready to take his shower. I laid out his toiletries as usual and we went through the routine of writing out what we would be doing tomorrow on the calendar. But what we were writing in that calendar about the next day was hardly a routine. The next day, we would be moving Sebastien into his new home — a place where he would begin his transition towards a more independent life, away from me, for the first time in 20 years.
After that, I staggered outside gratefully into the fresh evening air. I heaved a huge sigh of relief. I needed some room to breathe. It had not been easy to be the recipient of Sebastien’s emotions — possibly an intermingling of grief, fear, anxiety, and I hope, a good measure of excitement. I sat down on a lounge chair by the bean-shaped pool. Burying my head in the palms of my hands and slumping further down onto the chair, I could feel the fatigue all over my body. Then the tears, without any accompanying thoughts, came. I was terribly sad, though I could not put any words to them. All I could be sure of was that it had something to do with my intense interaction with Sebastien.
That was when it hit me. Sebastien had never stopped grieving about the Bali solution. The Bali solution was not a dream-come-true for Sebastien. Making the decision to live here had not come easy for him, as he knew that Jerome and I would not be living with him.
In contrast, Jerome and I had been so caught up in trying to make the Bali solution happen that we had stopped experiencing the terrible sadness of what was about to transpire. All these frustrating setbacks had also been a great diversion. However, with his intense rocking, Sebastien had reminded me of how terribly sad the Bali solution was and compelling me to confront my grief.
This would mark the start of an intensive grieving process that would continue for far longer than I could have ever imagined. We would not know it then, for we were winging it, one step at a time. But coming to terms with this choice would prove to be a far more challenging experience than setting up the new home.
However, that evening, I wiped away my tears and pulled myself up, as though grief was something that I could just shrug off my shoulders. I took a deep breath and put on my “game face”; there was still too much to give way to my emotions. Our current busy-ness provided the perfect camouflage for all the unknowns that lay ahead, which might otherwise have stopped us in our stride.
* * * * *
Sunday, September 4th, flew by in a whirlwind. We had a tight agenda with just one day to transport our luggage to the villa and shop for necessities for the household. Jerome would then return to the hotel that very night on his own and catch an early flight back to Singapore the next day.
Although most of the larger pieces of furniture like beds and tables, as well as a small fridge, were already at the villa, Jerome and I sourced for the must-have foods and household items or their substitutes. We also purchased a printer to print out the homework I would still be designing for Sebastien. Essentially, we were setting up another household, albeit, a miniature one, in one day.
The day was mad. We bought as many things as I thought I would need for the household. I didn’t want to miss out on anything. Much as I loved the villa we rented, its location away from the town centre, where all the amenities were within walking distance, was a considerable complication for someone like me. As I didn’t ride a motorcycle — the most common mode of transport there — and there weren’t any available means of public transportation, it wouldn’t be easy for me to move around and perform errands in Bali. So I wanted to make sure that I had everything I needed, at least until I felt more settled, before Jerome left.
While we were busy shopping and then unpacking the items in the house, Rafi spent his first day hanging out with Sebastien. Apart from a 20-minute motorcycle ride in the vicinity of the rice paddies, the two lounged languidly on the couch at the patio, looking at the iPad together. Occasionally, we enlisted Sebastien’s help in tearing apart the plastic wrapped around new plastic storage containers and crockery items, or removing price stickers. Thus, he too was involved, to a limited extent, in setting up the new household.
By the time the surroundings were plunged into pitch-black darkness and Sebastien had gone for his first shower in the villa, the villa was largely set. There was just enough time for Jerome and me to grab a quiet dinner at one of the two small restaurants nearby before he headed back to the hotel in town. Jerome and I opted for the vegan restaurant where we had first met Carlos. Given that this was the starting point of when the Bali solution began to turn around, it couldn’t have been a more ideal place for our quiet celebration.
The restaurant at night was illuminated by the gentle glow of paper lanterns. Against the darkness that was barely lit by the street lamps, it offered a cheerful presence that beckoned to passers-by to enter into its midst. Jerome and I walked in, in a celebratory mood. We had undoubtedly earned this celebratory meal. After all, against daunting odds that almost crushed us, we had managed to pull off this incredible move within the allotted timeframe. And if we were to reflect even further upon the road we had travelled back since the beginning of the year, there would be much for us to cheer about. The fact that we had emerged through such trying times, with our relationship still intact and strengthened, was a miracle in and of itself.
Although I was clinking my glass of delectable “Island Smoothie” with Jerome’s concoction of “Mandarin and Lime Juice” in celebration, I was also starting to feel sad as our evening wound down. I wished that Jerome and I were just having a regular dinner there and then heading back together. Instead, this would be our “last supper” of sorts and we would be figuring out how he could get back to the hotel in town. I was also nervous about returning to the villa where I would be initiating Sebastien’s new life in a foreign land without Jerome by my side. But I didn’t speak about it. We had gone too far to turn back now.
“I would probably cry myself to sleep tonight.” Apart from the “I love you’s”, those were among the last words that I said to Jerome before he stepped into a white car and disappeared into the dark night.
* * * * *
Walking on the winding and narrow path from the main road back to the villa, past the rice paddies and the handful of villas, for the first time at night was quite different from the daytime experience. My primary sources of illumination came from the moon, the stars, and the torchlight of my iPhone. There were no street lamps. I tried to ignore the knot of anxiety in my stomach. It felt nerve-racking to return to a house where I would be alone with Sebastien throughout the night. Three years had gone by since I last slept in the same house by myself with Sebastien.
To buy more time for my frazzled nerves to steady themselves, I slowed down my pace. I marvelled at the star-speckled sky that I had rarely seen since my childhood days and paused to admire the perfect “smiley” position of the crescent moon like the Cheshire Cat in Alice: Lost in Wonderland. Lost in the awesome vastness and mystery of the universe, my fears about Sebastien and what lay ahead seemed terribly small.
Suddenly, I felt like a child finding her footing in a strange new world — a village that bore no resemblance whatsoever to the concrete jungle of Singapore. It made me sensate to the buzzing life around me. There was the quacking of the gaggle of ducks near the start of the path, which was intermingling with the cacophony of the loud chirping of the crickets and the consistent rhythm of the croaking of the toads.
But a unique tune stood out in what would otherwise have been a monotonous village “symphony”. It was Sebastien. For a few seconds, I had not recognised his high-pitched, falsetto humming; it had blended so naturally into the darkness and the music of the creatures of the night. This was so unlike my experience of his singing in Singapore. Over the past years, hearing Sebastien’s singing in our flat, surrounded by neighbouring flats, supermarkets, and public thoroughfares, had been an endless source of stress. It had broadcasted Sebastien’s strangeness and “difference” to the public and drew hostile stares. Having to quiet him when he became too loud or disruptive was not just fatiguing, but often in vain, not to mention that it was accompanied by the risk of triggering a meltdown.
In contrast, this place, with the neighbouring houses spread hundreds of metres away from one another, was like a village paradise. It was a world away from the high-rise apartment blocks with units jammed one next to another with surrounding blocks that enclosed their neighbours like impregnable fortresses.
From a distance, I could see Sebastien sticking his head out of the bathroom window. At first, I had thought that he was calling out to me. I shone the torchlight towards his direction and waved to acknowledge him. But he just continued his singing, without skipping a beat.
No, he wasn’t waiting for me. Maybe he was communing with his new home, in the uniquely Sebastien way. He sounded happy; at least, I wanted to think so. And more than blending into the symphony of the night, his singing was adding some “colour” to it.
At that moment, the knot of anxiety in my stomach loosened. Just maybe, Sebastien has found his home.