Week 11 of Serialization: Where Does My Autistic Son Belong? Chapter 11: Take 1: Bongabon

Kah Ying Choo
22 min readApr 8, 2021

--

In 2019, I published Where Does My Autistic Son Belong?. It chronicles my struggle with raising my adolescent autistic son, Sebastien, and my subsequent decision of setting a home for him in Bali. As part and parcel of A Mother’s Wish initiative (amotherswish.com.sg) to raise awareness about the need to learn treat autistic individuals with genuine respect and empathy, I am serializing the book on Medium (please look out for the others chapters under my name).

CHAPTER 11

TAKE 1: BONGABON

(January 17th — 30th, 2016)

Our trip to Bongabon was a veritable lesson in figuring how to trust someone you barely know in a life-changing mission. Yes, the disparity of these two elements does make it sound like mission impossible. It was truly a reflection of the dire straits that we were in.

Aside from purchasing our aeroplane tickets and making sure that they matched Lucinda’s flight, we left all other preparations to her. Jerome and I allowed ourselves to be left in the dark about the specifics of the details, save for the handful of photos of the hotel that we would stay at and the queries that she had about Sebastien’s food preferences. Though one could say that our passive following of her lead could be considered a test of whether we could truly trust her with this recon trip, our stance was more a reflection of our sense of disempowerment about our situation with Sebastien and guarded enthusiasm about Bongabon.

To be honest, I can’t remember what we told Sebastien about the trip. It was a trip with so many layers of complexity for Sebastien. All previous frames of reference were confusing. Even though we were visiting another country, we were not on holiday. I didn’t know how to explain the concept of a “recon” trip to Sebastien. Visiting Bongabon could be a one-off event or one that could lead to a life-transforming situation. There was no knowing ahead of time and there was no way to prepare him for it.

Nonetheless, I didn’t want Sebastien to be taken entirely by surprise. So I at least informed him that we were checking out Bongabon to see whether he would like to live there with Lucinda. Even more significantly, I introduced the idea that he would be living there with “no mama”. As casually as I could, I explained that I would be working in Singapore to support his life in the Philippines. Nonetheless, I would come to visit him from time to time. It was the truth, albeit a partial one, which didn’t dredge up the state of our relationship and life in Singapore. I didn’t go into details. At that point, how we would organise Sebastien’s life, as well as the nature or extent of my involvement, was still unknown.

Although I didn’t know what Sebastien was thinking, I did get his attention. He stared at me intently without saying a word, digesting what I had just said. Then he said gruffly, “Mama,” with his typical tone of assertiveness. I clarified, “No, no mama.” Paltry as this exchange it was, it captured our conflicting positions on this mission. While Sebastien was definitely into the idea of leaving Singapore, whether it would be Bongabon or not, he wanted me to remain with him.

Even if Sebastien had more command of words and understanding, we would not have been able to overcome this divide. In a sense, this decision, as it stood, was one-sided, with parameters defined by Jerome and me. Sebastien had no say whatsoever in the matter. It didn’t matter what Sebastien would have preferred: neither Jerome nor I would be living with him in the Philippines. There was no compromise here. In a sense, this was not that much different from much of Sebastien’s life — people making decisions about him and for him without eliciting his input.

But, back then, I didn’t want to overthink the situation from Sebastien’s perspective. Had I done so, I would not have been able to go through with the overseas solution. As far as I was concerned, Sebastien had pushed us to this final resort and I needed to hold steady to my resolve.

* * * * *

It was with much trepidation and anxiety that I embarked on our recon trip to Bongabon, weighed down by all these unknowns, particularly Sebastien’s reaction to this enterprise on January 17th. However, my spirit lifted when I saw Lucinda’s bubbling enthusiasm and joyful smile as we met up with her at Changi Airport to head towards the gate. She alone possessed enough positive energy to carry us all the way through this trip. Even though she didn’t reach Sebastien’s shoulders in height, Lucinda walked side by side with Sebastien with casual confidence. She was clearly auditioning for a job that I had become too burnt out to do.

Lucinda continued to prove her worth when we endeavoured to make our way out of the Manila airport. Unfortunately, after manoeuvring past jostling crowds of people, we were confronted with a floor that was plastered with weeks- or months-old stickers. Even though we were trying to get to the parking lot as quickly as possible, Sebastien would halt every now and then to bend over to scrape off a sticker. In the case of the more stubborn ones, Sebastien would even sit down and double over to moisten the sticker with his saliva and then scrape it off. He was quite a sight for the appalled and half-jeering crowd. In contrast to Jerome’s and my fatigue and frustration, Lucinda stood by quietly, with a professional demeanour, waiting patiently for Sebastien to be done as though she had all the time in the world.

When we finally made it to the big white van in the parking lot, Lucinda introduced us to Marco, her brother-in-law. Solidly-built, Marco would be serving as our driver-cum-bodyguard over the next few days. And as we got installed in the big comfortable van, Lucinda presented us with a basket of fruits — apples, pears, bananas, and grapes — all the fruits that I had told her that Sebastien would eat. So far so good: Manpower. Car. Check.

What was not so good was learning that we had a long four-hour ride ahead of us before we would reach Bongabon in the wee hours of the morning. In fact, as we got stuck in the terrible traffic of Manila, I questioned the wisdom of what we were doing. Glancing at Jerome, I could already sense his impatience and annoyance. The fact that a seasoned traveller like Jerome would relinquish complete control of an overseas trip to someone he barely knew only testified to his state of mind about this whole enterprise. Indeed, we acted as though we had blind trust in her, not ever asking her about what we would be doing for this week or how much money everything would cost.

Somehow, as we were moving through these dimly-illuminated streets, I became uncomfortably conscious of how much I was counting on these virtual strangers to make this life-changing journey. I was taking a massive leap of faith and taking people I love most — Jerome and Sebastien — with me.

Then just when I was feeling unsettled, Lucinda made a confession when we made a stop to use a public toilet. It turned out that Bongabon was not her hometown, but that of her lesbian girlfriend who was also working in the same household as her in Singapore. This was the first time that she had ever mentioned the existence of a lesbian girlfriend. In fact, she had told me outright that she did not want to live alone in the Philippines, after spending all these years caring for an autistic person. Thus, she was interested in having Sebastien stay with her due to her familiarity with living with an autistic person. I had thought of 37-year-old Lucinda as a competent, independent, and mature person who worked hard to lift herself out of her poverty, someone who needed neither family nor a man to sustain her livelihood.

However, with this confession, Lucinda had shattered my image of her. It was not so much the contents of the revelation, which bothered me, as the secrecy and the timing. It made me feel ill at ease to realise that we were depending on someone who had been deliberately concealing information that was relevant to our enterprise from us. This was not an ideal start to a relationship that would require a significant amount of trust.

Nonetheless, I wasn’t about to kick up a big fuss when we were already way out here, in the middle of nowhere. Still, I was forced to admit to myself that everything I had presumed about Lucinda would now be cast in doubt. Even the entire enterprise and the week that stretched ahead now seemed mired in mystery. With the unexpected existence of a girlfriend, who else would pop into the picture? Suddenly, the plot had thickened.

The night got even harder when we finally arrived at the hotel at around three in the morning only to be confronted with a locked gate that blocked us from accessing the property. The staff that was supposed to have waited up for us fell asleep.

At that point, already feeling the fatigue of this long trip, I didn’t know how long Sebastien could hold on before snapping. So I stepped outside of the car to wait with the others who had notified Lucinda’s father-in-law who owned the hotel. It took some effort for me to maintain my composure as I stared out into the pitch-black darkness with my tired eyes that strained to stay open. What kind of “adventure” have I gotten us into?

By the time we hit the sack, after Sebastien’s shower, in accordance with his routine, it was already past 4 a.m. Being up and about at this ungodly hour in the grungy hotel with strangers made me wish that we could all just go home and pretend that none of this had ever happened. Thankfully, I was too tired to stay awake for too long to linger in my regret…

* * * * *

When the hot morning sun penetrating into the windows of the bedroom woke me up, I was shocked to find myself in such unfamiliar surroundings. I groaned as the memories of the debacle last night returned. What would the day hold forth for us today?

When Lucinda soon showed up, I had to bite my tongue not to blame her. With all the unexpected delays and the long travel that we only found out about last night, Sebastien had been subjected to significant stressors, which could lead to a potential explosion. All of this was very stressful for me.

“I am sorry about last night. It shouldn’t be like this. So unprofessional. Did you manage to sleep?”

“Yeah, it’s okay. There was nothing that you could have done,” I shrugged, playing it cool on the outside.

But Lucinda gazed intently at me with her big, imploring eyes: “No, no, it’s not okay. I am very sorry. They knew that we were coming. We even called them when we were on the way. But they still slept.”

I took a deep breath and smiled gently at her: “It’s really okay. I’m fine.”

She smiled back happily. All was forgiven. I just wanted to move on. If Sebastien had a meltdown, I wouldn’t be surprised. In the meantime, we would take it one unpredictable moment at a time.

“So what’s happening today?”

Lucinda’s eyes lit up: “We are going for a special homecooked lunch at Sister Verona’s house. She is my girlfriend’s older sister. The food is ready for you all.”

The moment I entered the family compound that comprised a small cluster of individual family homes, with their boundaries defined by concrete or stone walls, I felt instantly at home. Verona, a middle-aged woman with a down-to-earth air about her, emerged from the biggest house and led us to a table covered from one end to another with dishes of stir-fried vegetables, crispy deep-fried fish, dried beef, grilled chicken, and rice. It was a veritably sumptuous meal.

What most impressed me was Sebastien’s willingness to sit at the table and try out pieces of deep-fried fish and dried beef, even though they did not resemble the items he typically had. A natural host, Verona fleeted in and out of the kitchen to fetch us coffee and drinks while chatting with us. All of us, including Sebastien, felt completely at ease, as we wolfed down her delectable dishes.

I was also amazed at how Verona had no qualms about standing in close physical proximity to Sebastien; in fact, she even placed her hands on his shoulders, as she looked over them to check out his enjoyment of her food. In my mind, I was pondering whether Lucinda had spoken the whole truth about Sebastien. Did Verona know that Sebastien could be aggressive? Did she know that he banged his head? I didn’t want her to have a rude surprise. The intrusion of these thoughts certainly had a dampening effect on my inexplicable sense of well-being in this space

And then Sebastien stood up suddenly. Uh oh, what is he up to now? It was so like Sebastien to ruin a good thing after we were finally off to a good start. However, Verona did not flinch one bit. Instead of being shocked, she was curious. Sebastien picked up his chair and placed it in front of a shelf in the living room area. He stepped up onto the shelf and organised a series of similar cups on display by colour. Then he carried the chair back to the table and sat down.

Beaming at Sebastien, Verona praised him: “Thank you, Sebastien. The cups look nice like this.” Her calm and reflective stance towards Sebastien was just impressive. Despite having no previous experience in interacting with autistic individuals, she was able to go with her gut instincts and trust in her intuition to watch and observe Sebastien with openness, non-judgment, and acceptance. Wow, the appeal of Bongabon just got magnified by a thousand-fold. I almost wished that she could be the one looking after Sebastien. Unfortunately, with two older kids and a third just a baby, Verona had her hands full.

The permeating warmth and hospitality continued as we stepped out into the different areas of the family compound. As Lucinda took Jerome and me around the individual units to introduce me to her girlfriend’s parents and her siblings at the individual houses, we left Sebastien by himself in an outdoor space with a sticker activity to do. Nearby sat Verona who was rocking her sleeping baby in a hammock at an outside pavilion. But it wasn’t long before a small group of 3–4 boys and girls, ranging in age from five to 10 years old, came to sit at his feet. They were engrossed with Sebastien’s odd style of plastering the stickers on top of one another in multiple layers. While it is not the first time that children had clustered around Sebastien, it was rare to see children who watched him quietly in awe. Not once did they reach out to try to grab his stickers. Nor were they gawking at him as though he was a freak show. They reminded me of the 10-year-old students we had met on a train ride in Kanchanaburi, Thailand, back when Sebastien was 13. Unlike the city kids who were scared and judgmental of Sebastien because of his difference, those students were intensely curious about his difference. It was a nice change for me not to feel nervous about the sight of children around Sebastien. On subsequent days, this group of children would run out excitedly to greet us every time we arrived. Initially, I had thought that they were happy to see us, i.e., all of us. But actually, they were making a beeline just for Sebastien!

At the same time, I would come to realise the extent to which this family idyll was built upon substantial sacrifices that were borne by everyone in that family compound. As there were not enough well-paid jobs in the Philippines, there was a spouse who was working overseas in every household to provide sufficient income to support the families, while the other looked after the elderly and the children. The interlocking web of family connections across generations within this family compound thus provided a network of support that cushioned them from the sadness of their lives of sacrifice and heart-breaking separations. Even though these incomplete families constituted the norm in the Philippines, their family spirit and sense of joy still resonated.

Throughout the week, this family compound would become a “base camp” that I was always happy to return to after each of our hectic expeditions to explore the liveability of Bongabon and the vicinity. Although we were exploring rentals and key amenities such as hospitals, supermarkets, schools and even the surrounding nature, as part of this recon and decision-making trip, what kept the Bongabon option alive was our experience with this family.

The most hospitable hosts, the family drew us quickly into its inner circle of friends. Each day brought fresh faces into our life — childhood friends curious to meet us and neighbours who invited us to their homes for meals. Despite the language barriers that limited the extent of our communication, they never made us feel left out, even though we were visitors who would likely disappear from their life after this week if we chose not to proceed with the Bongabon option.

Nothing stopped them from pulling out all the stops to ensure that we had a good time. On the last day of our stay, the family rented a Karaoke machine for the big party. All of us took turns singing English pop songs while snacking and dancing. Even Sebastien joined in, dancing with Lucinda’s father-in-law, with everyone clapping and encouraging him. I had never seen Sebastien so relaxed and happy in a social setting. He was actually participating in a party like everyone else!

And when it was time to go, I wept copious tears. It was particularly sad for me to bid farewell to Verona. She had felt like a big sister to me.

* * * * *

Back in the quiet privacy of our hotel, it was time to sober up. After all, this recon trip was not about fun and games. We were actually making a life-changing decision that could potentially disrupt many lives. As we weighed the pros and cons of the Bongabon option, the cons loomed big and prominently. On paper, the Bongabon solution was a lousy one: the list of cons could have gone on forever. The place was as ugly and dusty as the images on the Internet suggested. Although we had fun on the motorcycle and private auto-rickshaw rides (as the family owned one), it was not so great to be assaulted by the flying motes of dust shooting into our eyes and noses during our rides. It was a downright unhealthy place to live in. Furthermore, it was lacking in the supplies of foods and items that Sebastien was accustomed to having in his daily life in Singapore, as there wasn’t even a large supermarket, a library, an art supply store, or a European-style bakery. We managed to locate some substitutes in a neighbouring town, which entailed hiring a car and putting up with the traffic.

Another issue that was of great concern was the weak Internet connection in Bongabon. This was a pivotal part of our homeschooling life: Sebastien and I used the iPad to search for images of unfamiliar words and concepts during reading sessions. During the week, Jerome and I had felt so frustrated by our inability to do research about the amenities available in the area that we switched hotels three times until we got to the highest-end hotel in the vicinity with decent Wi-Fi.

There was also the complication of Sebastien and Lucinda’s accommodation situation. Rentals were not particularly common in a town like this, with people preferring to sell their properties instead. However, neither Jerome nor I felt that we had sufficient resources to invest in a decent property in Bongabon. Verona and the family promised that they would ask around for us, but the prospect looked bleak. This essentially left us with a big question mark over a critical component of the overseas solution — where could Sebastien live?

But the truth was even if none of the aforementioned cons had existed, the sheer geographical location of Bongabon would have nipped this idea in the bud. Even if we were to fly to the far closer Clark International Airport, there was still a car ride of two hours. And the fact that it was prone to floods did not improve its odds.

As for the pros, the most obvious one was Lucinda: after all, she was the very reason why we even embarked on the trip. Throughout the trip, she proved to be highly capable of caring for Sebastien. On every expedition, when we were checking out places like supermarkets, which would not be too interesting for Sebastien, we left him under the care of Lucinda. Every time we returned, we could see them holding hands. Sebastien would be leaning on her, demonstrating his ease and affection towards her readily, even though he had not spent much time with her. This was a testimony to the strength of her command of an autistic person. For Jerome and me, it was truly refreshing to be able to walk about in the public space hand in hand, without having to worry about Sebastien. Someone else was looking out for him.

And then there was the surprise family. There were so many things about the family members, which were endearing: the way the children swarmed around Sebastien and cheered when we showed up; the natural manner in which Lucinda’s father-in-law danced with Sebastien at the karaoke party, as the others clapped and cheered; and the ease with which they had embraced Sebastien in their midst within such a short space of time. This was what an ideal “family” life could be like for Sebastien. To me, it felt more heartwarming and embracing than I could offer him in Singapore, where there were no family compounds that could enable the caring of an autistic adult to be distributed among so many.

At the same time, I was very aware of the distinct possibility that Sebastien could have meltdowns in this environment. While these family members were charmed by Sebastien during one week, how would they feel about him after witnessing the first episode and then living with him after one month and one year, when the novelty would have worn off, and the meltdowns would begin to feel like one too many?

I was upfront about my fears to Verona and Joseph, her oldest son who, at 13 years old, was already a mature source of support for his mother, in his father’s absence.

“Are you scared when I tell you about Sebastien’s hitting?”

Looked over at Verona, Joseph thought about it for a moment before speaking very slowly: “I am scared. I think we are all scared. But we also want to help Sebastien. Maybe we can help him. And we want to try to help him.” He spoke with such earnestness and conviction that I wished that I could stop worrying for the family and dispel the mental images of those cups on the shelves shattering one of these days and the goodness of these beautiful people being damaged by the hurt inflicted by Sebastien. Nonetheless, I was moved beyond measure.

I vacillated in the decision-making process. Jerome had left the decision to me: whatever I decided, he would support it. It was a case of head versus heart; the decision hinged upon whether I gave higher priority to my connection with the family or to the pragmatic, hard-core realities of the town.

Ultimately, I was a “heart” person. My heart told me to go for it, to take a chance. But then Jerome added another “con” that was associated with the family. The problem with cash-strapped, closely-knit families was that outsiders like me could end up sponsoring all their needs at the expense of Sebastien. This possibility led to another sleepless night. Was this a deal-breaker for the Bongabon solution?

Nonetheless, when I opened my eyes the next day, I came up with a compromise idea that integrated the heart with the head…

* * * * *

To move ahead with the Bongabon solution with some peace of mind, I prepared a contract to define the terms of this arrangement clearly. The contract stipulated monthly payments to Lucinda and Marco who would serve as extra muscle to ensure her safety. We had discussed the figures and come to an agreement during the trip. It addressed Lucinda’s concern for her livelihood by incorporating our commitment of hiring her for two years, as she would have signed a two-year contract with her current employer if she had not come to work for me. However, I also highlighted that my honouring of such a commitment would be founded on two key provisos: 1) the proper treatment of Sebastien and the implementation of the homeschooling programme, and 2) the responsible use of my funds strictly for Sebastien’s needs, which needed to be backed up by a basic, but nonetheless, accurate record-keeping of the accounts.

With regards to the second proviso, I decided to be explicit about what Jerome had mentioned about the common exploitation of the foreigner’s funds for the family’s use: “Please respect that we also work hard for our money. Thus the money we send to you for Sebastien should be used for him only and not others. If you would like us to provide financial help with the family, please let us know and we will help if we can.” I was very aware that such a statement could be taken the wrong way. However, I did not want to hold back on putting my fears and concerns on the table. Honesty and trust were pivotal in this relationship. Defining parameters in concrete terms with real-life consequences was a critical first step. In a sense, it was also a way for me to establish how I want my relationship with Lucinda to be like. Particularly in Asia that tends to suppress the expression of individual opinion to maintain the façade of harmony, I wanted to set a different tone. Both Lucinda and I needed to feel free to speak our mind in our relationship, with regards to the care of someone like Sebastien, who could not speak for himself. Nonetheless, I ran the wording by Jerome to get his input before sending the contract off to Lucinda.

In formulating this contract, I was also mentally filling in the gaps of an unknown future. Already, I could see that the transition period would be a complicated process that I could not even begin to fathom. For a start, recreating a homeschooling programme for Sebastien in the Philippines, which integrated elements of his homeschooling life in Singapore with his new surroundings, would require effort and continuous tweaking. Depending on Lucinda’s ability to deal with the situation and Sebastien’s responses to the situation, we would be changing many things based on trial and error. I wasn’t sure how Sebastien would respond to all this.

And then there was the role that I would be playing in my collaboration with Lucinda. As a first-time employer with a helper, after being a hands-on carer for the 20 years of his life, I wasn’t sure about the extent to which I should hold on or step back. Apart from providing her with money and resources, what did it mean for me to play a strategic and supportive role to ensure that Lucinda had whatever she needed to run their life together? Addressing these questions also involved thinking about my expectations of what an alternative carer would do for Sebastien. Feeling that I had done such a terrible job as to lead to this eventuality, I was not sure that I was even the best judge of this. I also wondered how often I should be visiting to make sure that Sebastien was doing fine. The fact that the Wi-Fi was not working well enough for us to stay in steady contact almost made these in-person visits necessary. However, if I were to fly in so frequently, then how could I be forging a separate life and working so that I could support this life financially?

There were so many questions that I could not answer. Thinking about them only made the whole transition process sound even more daunting. One step at a time, I told myself, we would cross that bridge when we reach it.

* * * * *

All my worrying about the execution of the Bongabon solution proved to be unnecessary. What took me three days of careful formulation was rejected in just a matter of 30 minutes. My proviso about the responsible use of the funds was the deal breaker. According to Lucinda, both her girlfriend and she found the proviso to be insulting to the family. As such, she would be renewing her contract with her current employer. She communicated her decision in an SMS, giving no room for discussion or explanations. My SMSes about how much I adored the family and how it was not at all my intention to “insult” the family fell on deaf ears. I felt as though Lucinda was just listening to her girlfriend. But the fault did not lie with her girlfriend whom I had not met. After all, she had not been there to see the amazing connections we had developed with her family during the past week. But Lucinda had witnessed Verona and me openly weeping and hugging one another as we talked about the implications of me leaving Sebastien in Bongabon. The fact that Lucinda hid in the umbrage of her girlfriend’s decision when she could have spoken out on our behalf and changed this impression felt like the worst kind of betrayal.

At the same time, the fact that we failed to cross this first honesty barrier suggested that this alliance would not have worked anyway. Furthermore, though I had first gone to Bongabon because of Lucinda, what she had promised — the farm life — was no more real than what I had been weaving in my head. In reality, she was a city dweller form the suburbs of Manila.

Furthermore, I had opted for the Bongabon solution not just because of Lucinda alone, but also because of the family even though I didn’t know how much of a role they would play in her life with Sebastien, if any. The unique connection Jerome, Sebastien, and I had with the members of the family was the genuine connection of one human being to another. However, for Lucinda and her girlfriend, the relationship was purely transactional. In fact, Verona herself had no issues with the contract: when I sent it to her, she told me that she found my expectations to be fair and reasonable. But her perceptions did not matter.

Though I did not think so at the time, it was for the best that the Bongabon solution did not work out, which went beyond the practical reasons that we had cited.

You see, I was in a psychologically terrible place. At the start of this quest, I was terrified of Sebastien, eager to set up a situation that would give me some breathing space. During that week, I thought I had found the ultimate refuge — being constantly surrounded by an extended family of joyful people who were enthusiastically buzzing around Sebastien and attending to his needs felt very safe. This was in stark contrast to the isolating, one-on-one existence, in which I bore the full burden of the caregiving responsibility.

However, nice as this family was, it would have been terrible for me to let go of Sebastien, without feeling pure love for him, which was not clouded over by fear and disappointment. That was where I was at. Hard as the long good-bye would be, a step-by-step process was almost necessary for me to get to a place where I could adopt a loving attitude towards this pursuit of an overseas solution. Thus, the arduous and heart-wrenching quality of the journey was also needed for me to retrieve my feeling of love for my son.

--

--

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