Serialisation of Where Does My Autistic Son Belong? Chapter 19: ROCKY START

Kah Ying Choo
19 min readAug 13, 2022

--

(Please catch all the preceding chapters on Medium.)

This post features Chapter 19 of my 25-chapter book, Where Does My Autistic Son Belong?

A Special Note

Like everyone else, I am a sucker for tidy, happy endings. Thus, I wish I could have proclaimed that our life after moving Sebastien to Bali was a “happily ever after.” The reality is that it would be years before the days when I could embrace the course of my action unequivocally would outnumber those when I am assailed with self-doubt. Even so, there are still moments when I would shudder at how tough it must have been for Sebastien when we still didn’t have the right carers in place. Without a common language of communication, it would only through trial and error, i.e., Sebastien’s reaction, which would help us to see which carers genuinely cared for him versus those who were only there for the money.

This is why Sebastien is a hero in my eyes. For he embodies courage and perseverance in surviving those adverse circumstances, without ever giving up on Bali and on us to make things better. And he was right; we got a lot better at managing the situation, though it took a bit of time. So when people laud me for my strength and courage in embarking on this bold solution, I am embarrassed. Nothing I have experienced — even the grief of letting Sebastien go and the crisis of losing my core identity as a homeschooling mum for a decade—could compare with what he had had to go through. Ultimately, I never had to face anything alone; I could still talk to someone. In contrast, Sebastien had had to navigate through all the emotions imaginable by himself.

But most of all, what the last couple of years have taught us is that any complacent belief that Sebastien is all settled is just magical thinking. After surviving the unprecedented pandemic during which we didn’t see Sebastien in person for two years and three months, we know that the choice we have made has an ever-evolving dynamic. Ensuring the security and sustainability of our Bali Bubble is the minimum. How we can better support Sebastien in dealing with the growing pains of being neither adult nor child in the conventional sense will be an ongoing challenge in the forthcoming days…

Sebastien — a full-fledged adult at 26 — in July 2022
Sebastien with the carers and family (Bali Bubble)
Our thank-meal with our carers, July 2022
Connecting with Sebastien — our reunion in April 2022 (after 2 years and 3 months apart)

This book will take you to just the end of the first year of what has now turned out to be a six-year “social experiment” of transplanting Sebastien, my now-26 year-old non-verbal autistic son, to Bali, and still counting.

For more recent updates of what has since happened, you can check out the blog on A Mother’s Wish Website. Or better yet, support Sebastien’s future by becoming a VIP Patron on Patreon (just SGD21/month), where you can receive a monthly e-pub of his latest paintings and my updates about his life with photographs, among other rewards.

CHAPTER 19

ROCKY START

(September 17th — early October 2016)

During the two and the half hours of my flight to Singapore, all hell had broken loose in Bali.

But I was blissfully unaware. So long as I was up in the air, I could entertain the idea of Sebastien leading a happy and independent life without me.

However, when I landed and turned the “airplane mode” off, the phone started to ping with a whole series of disjointed WhatsApp messages from Rafi. Between the broken English and missing pieces of crucial facts, I couldn’t make heads or tails out of what had exactly happened. All I could tell was that Sebastien had taken Rafi by surprise and lashed out at him after I had left. Despite sending off multiple messages to get further clarification, the picture didn’t get any clearer. How Sebastien had lashed out at Rafi, the extent of Rafi’s injuries, and the situation with Sebastien remained unknown. Rafi’s incoherent replies that left a huge vacuum in my mind only fed my dark existential fear that Sebastien had caused irreversible damage to Rafi or to himself. What have you done, Sebastien?

Sebastien’s “graduation” had tanked completely! It was like a repeat of our homeschooling journey. I felt as though I just couldn’t do anything right with Sebastien, however hard I tried. All the build-up and preparations had crumbled within minutes of my departure. My first instinct was to leap onto the next plane to return to Bali.

This was what I would have done had I been alone. Thankfully, I was not alone for too long; Jerome was there at the airport to welcome me. He kept his head and came up with a sensible suggestion, “You are not going to fly back tonight. Let’s get home first. When you have rested for a minute, we’ll call Wayan to find out what happened.”

Wayan was the driver who had driven me to the airport. Having lived abroad for 20 years before his return to care for his elderly parents, Wayan was far more proficient in English than most of the locals, particularly in the village areas of Bali.

The moment we entered the house, I called Wayan by WhatsApp: “Wayan, this is Kah Ying. Something happened between Sebastien and Rafi. Can you call Rafi to find out what happened?”

“Rafi is okay.” Wayan sounded reassuringly relaxed. I finally took a real breath. So what really happened?

“Rafi WhatsApped us to say that Sebastien hit him and he was hurt. Did you see him?”

“Yes, Rafi called me to go to villa and said help me like that. Rafi said when Sebastien came out from shower, Rafi smiled at him and said, ‘Hi, Sebastien,’ Sebastien just screamed and hit him.”

“Oh. Was it bad? Could you see his injuries? What did Rafi do?”

“Pfff… it’s nothing bad. Maybe some scratches on the arms, nothing bad. I think Rafi just scared and then run outside to call me. Heh heh heh!”

I was somewhat relieved to have a witness account of someone who had actually seen Rafi with his own eyes and assured me that he wasn’t seriously injured. This was a piece of good news. I had told Rafi to contact Wayan as a potential resource in the event of emergencies. For Wayan was a solidly-built man with bulging arm muscles. What was more unclear was whether what had happened between Sebastien and Rafi constituted an emergency or not.

Now to the crux of my concern: “So is Sebastien okay? Where is Sebastien now?”

“Yeah, Sebastien is fine. He is in the villa. Very quiet, not screaming, like what Rafi said. But Sebastien bolted the front doors. Hee, hee, hee. So Rafi cannot go inside. He had to go home. But he come back tomorrow.”

Although I didn’t feel that Wayan’s attitude towards Rafi was particularly kind, his lightness about the situation convinced me that Rafi was indeed all right and Sebastien was fine. Why else would he be laughing so light-heartedly?

Now that we got the story straightened out, Jerome and I focused our WhatsApp messages to Rafi on his injuries: “Are you hurt? Where are you hurt?”

“I am okay.” A terse reply. We waited a little longer for more of an explanation. But it didn’t come.

“If you need to see a doctor, just go.”

“No need doctor.”

Now I wanted to make sure that Rafi had not gotten so frightened off by Sebastien that he would not return to do his job. At the same time, I didn’t want to come off sounding like I had only expressed my worries about his injuries because of my concern for Sebastien. However, Rafi wasn’t making it easy with his brief responses.

“What time are you going to the villa tomorrow?”

“6:30. At the villa.” An immediate reply. It was earlier than what we had agreed upon. But I didn’t correct him. Both Jerome and I were just glad that he hadn’t quit.

The next morning, I awoke with a start — the striking “ping” of a WhatsApp notification. Good news. It was Rafi. He had arrived at the villa. Sebastien had unlocked the door and Rafi could enter the house. They would be going to school later together, as planned.

It was a rocky start, but they had made it through the first night.

* * * * *

My relief was short-lived.

Over the new few days, Rafi kept sending disturbing reports about Sebastien with regards to the removals of electrical fixtures from the house. First, an alarmed neighbour informed Rafi that he witnessed Sebastien yanking out the wiring of the garden lamps at night. I couldn’t tell whether this had happened when Rafi was locked out of the house or had gone out for dinner, as he was supposed to sleep over at the villa during my absence. Despite my questioning, I couldn’t figure out Rafi’s whereabouts during Sebastien’s commission of this dangerous act. In the meantime, an annoyed Carlos confirmed that Sebastien had ripped out the wiring. Since Sebastien risked electrocuting himself by messing around with it again, we all agreed that there was little point fixing it. Garden lights gone.

The next victim was the gigantic wooden ceiling fan in Sebastien’s bedroom. Sebastien wanted it removed. But his request did not seem logical. Without any air-conditioning, the fan was the only means of cooling down the room at night when windows needed to be closed to shut out the mosquitoes. To top it off, Sebastien had chosen to sleep with three layers of clothing on his upper body, which included a sweater with a hoodie.

Given its sheer size and weight, I knew that removing the fan and transporting it out of the villa would involve a degree of logistical organisation. However, all I heard from Rafi was this: “Sebastien don’t want fan. Fan no more.” It was Bali. Somehow, they would make such a physically arduous task happen without making a big fuss about it. So I didn’t probe.

I would only learn the whole truth about the sorry fan saga when I returned to Bali on the second trip. Apparently, when Sebastien had first made the request to Rafi, Rafi had contacted Carlos, who was told it could only be done three days later. This was not the answer Sebastien wanted. He banged his head and charged towards Rafi who ran off to hide inside my bedroom. Terrified, Rafi called Martina. She had rushed to his rescue.

Based on Martina’s gripping account of what happened that day, I had reconstructed the scene to capture the tension of the exchange:

“Hello, Sebastien!” Martina greeted Sebastien brightly, as though she was blissfully unaware of his state of mind.

“FAN! TAKE… OFF!” Sebastien barked. He wasn’t getting side-tracked.

“Okay… Yes… Fan off… I hear you… We can take the fan off… But on Tuesday.” Martina spoke slowly to let her words sink into his mind.

“TAKE FAN OFF!” Sebastien banged his head. He extended his arms to her, as though he was going to whack her.

“SEB! STOP! DON’T YOU DARE HIT ME!” Martina shouted, raising her forefinger to her eyes blazing with indignation.

He backed off, his arms halted in mid-flight.

She smiled, “Okay, Sebastien, good young man. Fan off Tuesday.”

“Fan off Tuesday,” Sebastien repeated. The tension dissipated. Sebastien was calm again.

The whole time, Rafi had stood at the threshold of my bedroom, transfixed at this standoff. But it was a battle that Martina had fought to win so that Rafi could stave Sebastien off for two days before the ceiling fan could be taken off.

When I learnt what Martina had done, I felt deeply indebted. Martina had intervened in the situation at tremendous risk to herself, even though she didn’t have to. Certainly, Sebastien’s life within the domain of the villa was not her responsibility. In fact, the more I learnt about the days when I was absent, the more I would come to realise the extent of her selfless assistance.

But Martina did not want me to know what was happening in Bali, while I was far away in Singapore. She explicitly instructed Rafi not to breathe a word of this to me. As a mother, she was moved to help. At the same time, she knew that as a mother, she would have been worried sick had I known about all this. So she just stepped in.

During these tough early days of our Bali solution, Martina was indeed someone who nourished my faith in the courage and goodness of humanity.

Carlos, our landlord, who had sounded accommodating at first, wasn’t at all happy. Sebastien was definitely pushing the limits of his tolerance and I certainly didn’t blame him. To deal with Sebastien’s barrage of requests to remove things from the household, Carlos had to build a shed on a nearby patch of land, just to house them. The next time I returned, Carlos expressly pointed out that Sebastien had also managed to remove two decorative concrete sculptures on top of the walls that flanked the front gate. I could no longer remember what they were. Thus began the start of an increasingly tense relationship between Carlos and our household. My assurance that we would cover the costs of all the damages at the end of our lease didn’t help matters.

Receiving all these dismal reports about Sebastien’s disruptive behaviour was disappointing, to say the least. Why had we made these sacrifices only to trigger a new set of undesirable behaviours on a far larger scale than we had ever seen before? It was as though we had just given Sebastien a larger theatre to wreak his havoc. We were also at a loss as to why he wanted to remove fixtures from the house on such a massive scale. What was Sebastien trying to communicate?

Apart from the distinct possibility that Sebastien was extremely upset about living in a foreign land on his own, I was also feeling extremely uncomfortable about Rafi. At this point, with Rafi’s continuous curtness in communication, I still couldn’t determine whether Rafi had stuck to our arrangement of sleeping over at the villa, or that he couldn’t because Sebastien had locked him out. At this point, Rafi and I had decided that it was possible to leave one of the large windows at the back of my bedroom unlocked, which would allow Rafi to enter my bedroom and then gain access to the rest of the house. Nonetheless, if Sebastien was still trying to lock Rafi out of the villa, it was also not a good indicator of their relationship.

With so many unanswered questions and disturbing signs hovering over this first run of the Bali solution without me, I could tell see in Jerome’s demeanour that he was frustrated. Although he never spoke about his worries for Sebastien or questioned the worth of the Bali solution, I couldn’t escape the feeling that I deserved the blame. After all, it was my idea to pursue an overseas solution. I was the one who pushed through the Bali solution in the face of all the obstacles that could have been the signs from the universe not to go through with it. I was also the one who didn’t blink about paying a significant sum of money to hire Rafi to be Sebastien’s carer. Finally, I was responsible for training him to be ready to step into my role. But now, everything was blowing up in my face.

However, I didn’t speak about my guilt out loud. Instead, I hid my perceptions under my façade of the “can-do” solution-oriented attitude that had driven me while I was without Jerome in Bali. Even though it seemed foreign and irrelevant in the Singapore context, I clung onto it. After all, it had enabled me to jump through all the hoops and overcome all the obstacles to set up the household in Bali. I didn’t want to lose that feeling.

Thus, whenever Jerome expressed his frustration and bewilderment about what was happening in Bali, I didn’t want to go there. The more we raged, the more we would have questioned why we pursued the overseas solution in the first place. It would be a roundabout discussion that would thrust us back into our place of helplessness and disempowerment. After all that we had been through, I just didn’t have the energy to go there. Neither Jerome nor I wanted to be there. However bad Bali seemed to be, we had moved onto some kind of Square 2.

So amid these disturbing reports, I focused on being grateful that others like Rafi, Ibu Surya, and Martina were doing the hands-on work of caring for Sebastien. I was so lucky that Sebastien had somewhat of a small community that was looking out for him. Without their existence, I would not have been able to endeavour to forge an independent life of my own in Singapore. Furthermore, as I was working intensively with a thesis client who was seeking my academic writing coaching and copy editing services, I also had an effective diversion for me to “let go” of the situation and let it unfurl.

* * * * *

Then one morning, about one week into my trip in Singapore, Rafi did not send his customary message to me to tell me that he had arrived at the villa. And when I posted a query, there was no response. Two hours later, when it was eight-thirty, the single check mark on the WhatsApp message suggested that he wasn’t even receiving my messages.

At this time, Rafi should be at the villa, where there was a strong Wi-Fi connection in the house. If the electricity was out and the Wi-Fi would not have worked, he still would have received the message via 4G.

What if something had happened to him or Sebastien?

Feeling disturbed about the situation, I sent out WhatsApp messages to Ibu Surya and Wayan in Bali, asking them to go over to the villa to check on Sebastien. Individually, they both confirmed that Sebastien and Rafi were at the villa, performing the exercise routine. This fitted with Sebastien’s schedule at the time. Subsequently, the two of them did go to the school, which also accorded with the schedule.

Nothing was apparently amiss, except for the fact that Rafi had stopped talking.

As the day continued, with no responses from Rafi to my queries, after they had gone, I again sent Wayan over to the villa to check on Sebastien and Rafi.

“Is Sebastien okay?” I asked anxiously.

“I don’t see Sebastien. But I hear sound like shower.”

Ah yes, it was about 6:30 in the evening. This would have been Sebastien’s shower time.

“Do you see Rafi? Is there food for Sebastien?”

“No, I don’t see Rafi. But I see some containers on the counter. Maybe it’s the food.”

All of this sounded right, for that time of the day. Rafi could have been out for dinner, or he could have gone home for the day. I could not be sure. At any rate, Rafi seemed to have ensured that Sebastien’s basic needs were met.

Only his behaviour remained enshrouded in mystery.

Rafi’s silence continued the next day. Once again, I dispatched Wayan over to the villa in the morning, and again in the evening, as there was no school that day.

After two days of this heart-palpitating silence, with no end in sight, I thought about returning to Bali early. One of the key reasons, which had held me back, was my concern for setting a precedent of returning to Bali ahead of schedule every time something was awry. This could send the wrong signal to Sebastien and Rafi, both of whom knew when I was returning. It had been written down in Sebastien’s calendar. Throughout my relationship with Sebastien, my motto had been to stick to my words so that Sebastien could count on it.

Furthermore, Ibu Surya and Martina were also sending me reassuring WhatsApp messages. Even without my asking, either one was checking on Sebastien to make sure that everything was fine. Thus, they filled in the gap of Rafi’s communication by sending me photos of Sebastien at school. Seeing him doing yoga poses, as well as arts & crafts activities, with his Indonesian peers of different ages and sizes was endearing. Despite the shadow cast by Rafi’s strange behaviour, there was still light and joy in Sebastien’s life, thanks to the school community.

Perhaps, things were not as bad as they seemed. I didn’t know what to think or how to feel. Throughout this ordeal, I lived suspended between two worlds — my body in Singapore and my mind on Bali. At every moment when I knew that Sebastien was not at school and was by himself with Rafi, which meant that I could not be sure of what was going on, I would feel a deep sense of unease. Is Sebastien really being fed? How is he feeling? What if Sebastien misses us so much that he injures himself irrevocably?

And in one instant, all these anxieties and fears exploded in my mind. I burst into tears and closed my eyes just to shut out the surrounding reality. What emerged in the dark void of my mind was my belief in Sebastien’s strength of spirit. He was one of the strongest people I know, with a remarkable will for survival. Thus, I could trust that, however much he was suffering, he would not inflict irreversible damage on himself. Then when I opened my eyes again, I felt a surge of optimism. Somehow, I knew that he would make it.

The breakthrough came on the third day. Ibu Surya informed us that Rafi had broken his silence. He would be contacting us later that day. Furthermore, Ibu Surya and Martina proposed a Skype call with us. Apparently, there was a visiting Italian clinical psychologist, Dr. AR, who wanted to shed some light on Rafi’s behaviour and his relationship with Sebastien.

Both Jerome and I had expectations about this Skype call. After spending the last two and a half days in bewilderment, fear, and anxiety, we would finally have the opportunity to get the story straight. We didn’t know what the clinical psychologist would say about Rafi and Sebastien. But uppermost in our mind was getting the answer to the most obvious question: Why was Rafi not responding to our WhatsApp queries? At a more pragmatic level, to put my mind at ease, I also wanted to know whether I should return earlier to Bali.

However, the answer would not be as clear-cut as we had wanted.

Well, the bad Internet connection at the school did not help matters. In between the disruptions, both Jerome and I struggled to make sense of Dr. AR’s explanation. According to Dr. AR, the problem in the dynamics of the relationship between Rafi and Sebastien boiled down to this: even though Rafi was meant to play the role of a “father” vis-à-vis Sebastien, he was more like the “son”. Jerome and I almost had to stifle a giggle at the thought of Sebastien being anyone’s “father”. We didn’t know what to make of this tanned doctor who sported a whitish-grey mop of curls.

However, Dr. AR spoke with such earnestness and seriousness that my attention was hooked. Even from a distance, I could sense that something was not right with their relationship. So instead of dismissing his words, I asked, “Sorry, I don’t understand. What do you mean by Sebastien being a father to Rafi?”

Dr. AR’s lips curled into a slightly embarrassed smile and a twinkle in his eye. He had no problems with starting again: “What I mean by father and son is this. In the relationship between Sebastien and Rafi, Sebastien is the leader. Rafi should be the leader and Sebastien should follow him. But Rafi does not know how to lead Sebastien.”

Hearing Dr. AR’s summation of the heart of the problem was like being handed a terrible truth. It immediately made me feel like a terrible mother. The fact that Rafi was not a leader to Sebastien was an understatement. He was downright scared of Sebastien. But I had hired him and even left him in charge of Sebastien. I could feel my heart race and my face turn hot with mortification. Dr. AR’s words were a confirmation that I had messed up. I had chosen someone who was not up to the task of looking after Sebastien. At that point, I felt the urgency to return to Bali to find a replacement, to fix my mistake.

“So should Rafi be looking after Sebastien?” I asked shakily, prepared to hear an answer that I might not like.

Dr. AR smiled enigmatically: “Rafi cares about Sebastien. I spoke to him. He just doesn’t know how to lead Sebastien.” His response was non-committal. It was not a decision for him to make. Perhaps, at that point, while I was still in Singapore, with no other alternatives, I wasn’t in a position to make any decision.

“So should I return early?” I just came right out to say it. In the face of all this new information, I no longer knew what I was supposed to think, feel, or do. Nothing made obvious sense to me.

That was when Ibu Surya stepped in. She responded with her calm and smiling demeanour without missing a beat: “Sebastien is a part of our family. You are also our family. You can trust us to take care of him.”

Just to be sure about what she meant, I leaned forward and posed a more specific question in earnest: “Do you mean you will visit him at the villa and check on him every day until I return?”

She smiled and nodded her head.

I sat back, feeling relieved and grateful for her kind offer, “Thank you. In that case, I will come back as planned in early October.”

“Thank you for your trust,” Ibu Surya replied.

It would take me a full hour to process the Skype call. Once again, I was floored by the persistent, respectful, and peaceful resolution of a distressing human situation. Even though the most practical or straightforward solution would have been to “force” or threaten Rafi to talk, Ibu Surya and Martina waited and stepped in to compensate for him. Although they were also extremely frustrated with him, which I would also learn later, they did not bog us down with the details about their repeated requests to persuade him to communicate with us. Nor did they reveal their own worries about Sebastien sleeping alone in the villa. In particular, Martina would be so stricken with worry for Sebastien alone in the villa in the middle of the night that she would traverse down the bumpy dirt path to check on him. She would stand outside the window of Sebastien’s bedroom, waiting for a few moments to listen for the muffled sounds of his breathing. Only with this assurance did she take off into the night.

At the end of this three-day ordeal, I felt humbled by the heart and spirit of this village community in Bali, which had stepped up to embrace Sebastien and Rafi in its midst. This was not what I had counted on. Having lived in the city for so long, I was unfamiliar with people who would inconvenience their lives to such a great extent, without any expectations of being compensated, to come to our aid. Even in the face of the language and cultural barriers, which could mean endless back-and-forth exchanges that seemingly led nowhere, you just could not dismiss the Bali solution. Each and every time, I had been pleasantly surprised by the people who managed to come up with resourceful and expected responses to predicaments, which would remind me of the best of humanity.

If anything, instead of shaking me to the core of my being, these difficult three days pushed me to realise that both Jerome and I would have to open our minds and hearts to alternative perspectives and possibilities, which might not always make sense to us at the beginning. We would be hard-pressed to cultivate the patience to allow the underlying beauty of things to reveal themselves in their own time. This was a different world, with its own priorities, with its own pace and rhythms. And for Sebastien’s sake, as well as our own, we had to stick it out.

--

--

Kah Ying Choo

Mother of an autistic young man, who has been my muse and my teacher, published author, educator, and learner, schooled by the University of Life