Week 16 of Serialization of Where Does My Autistic Son Belong? Chapter 16 Sebastien’s Decision
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 treat autistic individuals with genuine respect and empathy, I am serializing the chapters of the book on Medium.
CHAPTER 16
SEBASTIEN’S DECISION
(July 25th — August 26th, 2016)
The odds stacked against us returning to Bali were very high. Despite my inexplicable confidence that the universe would somehow make this happen, I did feel paralysed in reality. I was torn between waiting even in the face of the possibility that the Bali option might never happen and pressing ahead with my preparations for the transition as though it definitely would. Stuck in this limbo, I moved sluggishly in my preparation of a slightly new training package to enable me and the carer to create Sebastien’s new life in Bali.
The radio silence of Nurse Ida certainly did not help. However lovely Nurse Ida and Dr. Citra were, they were still strangers who really did not owe us anything. Could I really count on them to help us find potential candidates to look after Sebastien? Moreover, I also wondered whether their efforts would be successful since they barely knew Sebastien. It had been hard for Jerome and me to nail down what we were exactly looking for in a carer. Although Sebastien had autism, we weren’t looking for someone with an in-depth knowledge of autism. What was more important to us was that the carer possessed the openness of mind and heart to care for Sebastien, as well as the physique to handle his meltdowns in a calm and composed fashion.
In the meantime, as we waited for Nurse Ida to get back to us, I was feeling the weight of caring for Sebastien even as I tried to treat him in as loving a manner as possible. The need for constant vigilance — be it triggers, potential meltdowns, and unpredictable moves that he was making, which could lead to an unforeseeable incident — was still exhausting. One day, Sebastien abruptly decided to close his eyes as he was walking from the car to the gym, which entailed going through a parking structure. He inadvertently bumped into the parking gantry and dislodged the bar. Apart from dealing with the irate parking attendants and my own stress about the damage, I had to make sure that Sebastien who was startled by what he had done and the reaction of the parking attendants would not lose it. Luckily, the bar could be re-inserted easily, and the damage fixed. Still, it was a reminder for me never to let down my guard around Sebastien.
At this juncture of our relationship, I was not mad at Sebastien or frustrated with him. While Jerome and I could discuss our impending transition with one another, Sebastien was all alone in this process. He must be experiencing so much inside, with no one to talk to. So I went out on a limb to ask him how he felt about Bali. At this juncture, the iPad had become a tool for us to have spontaneous conversations. Unlike the scripted versions, where I basically taught Sebastien scripted responses to routine queries, I would be doing my best to elicit answers I really didn’t know. Here was how our brief Bali conversation went on the iPad:
Mama: Are you scared about living in Bali by yourself, no mama and no Jerome?
Seb: Yes.
Mama: Do you want to live in Bali?
Seb: Yes.
At the very least, Sebastien had given his blessing to the Bali solution. This was the first time that he had “approved” of any of our overseas options. But then he said out loud, “Mama. Bali.”
I had to fight back my tears, even as I reminded him as calmly as possible that I would only be staying with him in Bali in the beginning to help him not to be scared. But I would leave him later on because he was a big young man who would have his own life. Nonetheless, Jerome and I would still visit him and take him on holidays. I was relieved when he remained quiet, gazing at me with his façade of composure. I hoped that he had arrived at a mature acceptance of this difficult situation.
However, just two days later, when we took Sebastien out to his weekly dinner at the usual Indian restaurant where he was treated to his favourite tandoori chicken, naan, and jeera rice, he looked clearly distressed. Throughout the dinner, he kept pressing down on his head, which was typically the precursor to him banging it. I barely touched the food on the table. It was so frustrating: after all, we were especially taking him to eat his favourite meal at a familiar restaurant, where the waiters were like our second family. The next day, I told Sebastien off: “If you want to act like that, bye bye tandoori chicken dinner. We needed to show some respect to the restaurant and the waiters.” It would only dawn on me later that Sebastien was grieving for the imminent loss of his tandoori chicken dinners at this restaurant. Having chosen Bali as the place that he wanted to live, Sebastien was counting down to his final meals and saying good-bye. That night, he didn’t bang his head; on the contrary, by pressing down on his head, he was doing his best to contain his emotions. It was yet another example of how I had failed to understand Sebastien’s unique way of communication and recognise the incredible restraint that he had shown. Ultimately, Sebastien, like me, was grieving, though in his own way.
Much as I had striven to be sensitive to Sebastien’s perceptions of our limbo situation since our return from our recon trip to Bali, my failure to read his responses was still making him feel alone. But even worse, I knew that I could not make his grief go away by giving him what he wanted. Moving him abroad without me was non-negotiable. Thanks to Jimmy, my spiritual master-cum-handyman, I was convinced about the rightness of this course of action. I didn’t want to remain a crutch that Sebastien would lean on just by being in the vicinity. For the overseas solution to work, I could not stay in the picture.
* * * * *
Despite my fears, Nurse Ida contacted me in early August. She had come through for us! There were five candidates for me to interview via Skype. I was extremely grateful for this “international mobilisation” to make the Bali solution happen. It was genuinely taking a global village to raise an autistic young man. For a few moments, Nurse Ida’s efforts helped me feel less isolated and helpless than ever before.
But in the end, my happiness was short-lived. The interview process turned out to be trying and disappointing. Apart from being able to say “hi” and “how are you”, none of the young men spoke much English. They were extremely dependent on Nurse Ida to interpret their responses. It was hard for me to imagine training a carer who could not speak any English. After all, Nurse Ida would not be present all the time to serve as an interpreter.
Moreover, none of these carers would be able to communicate with Sebastien. Therefore, beyond getting factual responses about their ages, height, and weight to make sure that they had the maturity and physique to handle Sebastien, I did not have in-depth conversations with any of them. While their physique was somewhat adequate, almost all of these young men, ranging in age from 21 to 26, seemed too immature to be able to take on the responsibility of caring for someone like Sebastien. And when I asked them how they felt about Sebastien’s aggression, they echoed one another in stating that they wanted to help Sebastien overcome his problems. The echo chamber answer to this critical question was not at all reassuring for me.
Nonetheless, the oldest candidate — a 26-year-old named Rafi — did stand out from the rest. Unlike the others who appeared shy and awkward, barely looking at me, Rafi at least made eye contact with me and smiled. He also spoke a little bit more English than the others. But when I mentioned to Nurse Ida that the only possible candidate was Rafi, she informed me that he currently had a job! Then why was he at the interview?!
Frustrating as this unfruitful first round of interviews was, I didn’t want to dwell on it. Now that the ball was finally rolling, it was essential to keep the momentum going. After all, now that I knew what the pool of candidates was like, I could be more explicit about the types of candidates I didn’t want to interview. So I requested for another round of interviews, preferably with more promising candidates who were more mature and could speak more English.
However, Nurse Ida was not hopeful. Apparently, it had already been difficult for her to put together this first pool of five candidates.
And she was right. For the second round of interviews, only two out of five candidates who were supposed to show up actually came. They were even younger, quieter, and timider than the others.
We had reached a dead end. The situation was not looking good for Bali.
* * * * *
Amidst this uncertainty over Bali, I received an invitation from a local autism organisation to visit its Day Activity Centre as an option for Sebastien. As I was guided through the brightly-lit corridors, it was hard for me not to be impressed by the bright and clean kitchen, as well as the individual modern rooms with audio-visual equipment and computers. The neatly-organised charts that set out the individual schedules of the beneficiaries also suggested that the centre catered to specific needs. The existing facilities were further supplemented by the amenities of other organisations, which were shown to me on a video. All in all, it aimed to provide a well-rounded life for its beneficiaries with a wide variety of activities.
To top it off, the centre was far more accommodating with its arrangement than all the facilities I had previously visited. Sebastien could come to this facility on a part-time basis, whether it was based on the reduced number of days per week or a decreased number of hours per day. The other facilities had expected the enrollment to be full-time.
This centre would have been a dream-come-true for any parent with an autistic adult who was not stable enough to get into full-time employment. I was tempted. Given the impasse that we had reached with our Bali option, I could have leapt at this opportunity. Instead, I told the centre director about Bali.
She offered a very sensible suggestion: “Why don’t you enrol Sebastien here first? If it did not work out, you could still take him to Bali.”
“That’s not a bad idea. I will get back to you very soon.”
But the moment I stepped out into the bright sunlight, with the towering public housing flats looming before me and the traffic swishing by, I knew my answer. There was no way that Sebastien could remain in Singapore. Everything about Sebastien, from his creative passion to his reckless style of doing things, was at odds with Singapore’s rigid expectations of rule-abiding behaviour. He was certainly not right for the centre that felt a little too white, a little too shiny, and a little too clean. It was hard for me to imagine Sebastien functioning appropriately in such a space without disrupting its brightness, shininess, and cleanliness. And if he were able to restrain himself and comply with the expectations of this space, I was almost certain that there would be dire repercussions for me at home. He had to let go of his suppressed feelings somewhere!
My rejection of a viable option in Singapore only made it ever so clear that we had run out of options for Sebastien here.
* * * * *
August 9th — the National Day of Singapore — would turn out to be a momentous one for us. I started the morning feeling despondent. Regardless of my innate certainty that we should move Sebastien overseas, I was confronted with the reality that we were not making much practical headway with the Bali option. After the first two rounds of disastrous interviews, the old folks’ home had been silent. It was very likely that Nurse Ida had already given up on the search for applicants. I felt too discouraged even to ask. Out of desperation, I went online and found a Website that advertised job openings in Indonesia. With nothing to lose, I put up a “Seeking a Carer” ad, even though I had very low expectations of what could come out of it.
Although doing something about the situation made me feel less disempowered, I was pondering whether we should continue to wait for a more promising situation or make a risky move by returning to Bali with Sebastien by myself. While I set up his life at the old folks’ home and help him to adapt to his new environment, I could also be on-hand to interview potential candidates in person. Of course, if I did not succeed in finding someone, I would risk being stranded in a foreign country where I would still be assuming the primary responsibility of caring for Sebastien while paying a large sum of money for his upkeep.
As it was a public holiday, Jerome came over to discuss a timeline for the Bali option or close the door on it forever. Without any definite plans and firm deadlines, we were hyperconscious about not saying anything in front of Sebastien and setting him up for unnecessary stress or disappointment. Thus, we retreated behind closed doors for our discussion. After considering two key factors — our bleak prospects for finding a carer and an in-person work commitment that I had in Singapore in mid-September, we decided that the most sensible thing for us to do is to postpone any move till after September.
No sooner had we come to this conclusion than Sebastien called out to me: “Mama, reading.” He had just finished doing his sewing and was ready for his reading time with me. “Coming,” I replied. It was time for me to set aside my frustration about Bali and put on my “business-as-usual” face.
Carrying a book for us to read, I stepped out of the room with a big smile and plopped myself next to Sebastien on the big cushion next to his, where we always did our reading-out-loud sessions. But before Sebastien opened the book, he spoke, “Indonesia.”
“What about Indonesia?” I was startled.
There was no hesitation in his reply: “Indonesia. August.”
I swallowed hard. Sebastien’s words just took me by surprise.
It was vintage Sebastien. With just two words, he had simultaneously given us his blessing for the Bali option and turned it into a Bali solution, while setting a tight deadline. Even more significantly, this was the first time that he had initiated a conversation about any of the overseas options.
For someone like Sebastien who did not use his words to discuss serious matters, this was a big deal. At an emotional level, I felt an incredible sense of lightness and happiness. All this time, I had been the one who had been pushing for the overseas option without getting any input from Sebastien; it had been my initiative.
But, at a time when I was floundering in indecision, it would be Sebastien who was taking a courageous and determined stance to force the issue. Furthermore, by setting a deadline, he was propelling a prospective idea into the realm of concrete reality.
Nonetheless, meeting Sebastien’s deadline would not be a cake walk. With just 21 days to go, I had no idea how we would pull it off. What I did know was that I would do everything in my power to honour it. It was not often in Sebastien’s life that he got to make life-changing decisions. But now, he had spoken his mind about a decision that would turn his life upside down. It was only right that I abided by it.
I called out to Jerome. It didn’t matter that we had spent the last hour coming to a sensible decision. When he opened the bedroom door, this was what I said: “Change of plan. Sebastien had spoken. Bali. August.”
For some reason, buoyed by Sebastien’s expectations, I spoke with a reckless air of confidence.
Without hesitation, Jerome replied, “Okay.” He had read my eyes that told him to accept the situation, no questions asked. I would fill in the details later.
Satisfied with my answer and the confirmation from Jerome, Sebastien opened the book and began to read.
* * * * *
It was hard to explain how everything came together within 24 hours.
Just to take our minds off our troubles, Jerome insisted that we spent our evening exploring a different neighbourhood after we had left Sebastien for the day. Adhering to our tacit rule not to think or talk about our situation with Sebastien proved to be genuinely liberating. We headed out to an unfamiliar neighbourhood, where we enjoyed cappuccinos and slices of cakes in a hip, but quaint, café run by entrepreneurial young people. Jerome and I were out on a mini-date; it truly felt indulgent to do so in the midst of our crisis.
Later that night, I remember lounging in a darkly-lit restaurant with a dining area upstairs, observing fellow diners at the next table. The two ladies laid back on the couch, completely relaxed, with languid expressions on their made-up faces and glowing-white skins, as well as brand-name handbags tucked beside them. I felt self-conscious, like an impostor pretending to be just as relaxed and languid on a night out, instead of someone who had just signed up for a 12-hour “escape from life” pass that would soon expire.
It took a lot for me to refrain from doing anything related to Bali, whether it was to talk to Jerome about it or check my email. But I was glad that we “checked out”. Taking a break was restorative. There was no point fretting about the situation. I had done all that I could for the day.
In fact, that very evening, my ad on the Website in Indonesia generated a response. With my expectations pushed very low after the interview process with Nurse Ida’s applicants, I was delighted to be able to speak to someone who could understand me without needing an interpreter. Adi was a 45-year-old father of two sons. Although he resided in Jakarta, he was willing to move to Bali in order to earn an income for his family. Over the subsequent phone calls, Adi would demonstrate his heartfelt passion in taking on this position, not just as a professional, but also because he perceived Sebastien through the lens of a father wanting to help a son. During our exchanges, Adi proudly introduced his two sons to me, who greeted me politely. Adi and his kids also said “hello” to Sebastien, who actually reciprocated. The mutual love and respect between Adi and his kids brought back memories of the family in Bongabon. While I was glad that we had found Adi, I was also profoundly sad that I was about to break apart this family unit, even though Adi insisted that his separation from his family would be fine.
Moreover, Adi even took the initiative of going online to read up about autism. Even after he had landed the job, Adi sent me specific questions about Sebastien — his favourite foods, preferred activities, possible triggers, and strengths. To determine Sebastien’s sensory tolerance, he asked for videos of Sebastien walking about in the public space. He was definitely a carer who was serious about the job! Finding Adi gave us the ultimate breakthrough in the Bali impasse, which we had been waiting for!
With this critical piece of the puzzle falling into place, I launched into final preparations. When I revisited the pages of my training manual, I discovered that it lacked photos and step-by-step instructions, which would help Adi to carry out the caretaking operation without me present. So I began to photograph and write instructions related to every minutia of Sebastien’s daily life. This ranged from the proper sequence of how Sebastien prepared his cooked meal of steamed carrots, noodles, and fish down to the preparation of different toiletry items he used each today. With my grieving process shifting into hyper-drive, every mundane item — a toothbrush, a cup of Listerine, and his pyjamas — which I was documenting was transformed into an object of sentiment that could reduce me to tears.
The pressure of the preparations further intensified when Jerome and I decided not to move Sebastien to the old folks’ home there. It was a terrifying decision to make, but one that made complete economic sense. If Sebastien were to live at the old folks’ home, we would have to fork out a significant sum of money just to retrofit Sebastien’s tiny villa to meet his specific needs, due to the absence of the furniture he used and the lack of a kitchen in the house. In addition, we would still have to cover the monthly fee that amounted to SGD2,500/month for Sebastien to stay there, even though we would not be able to make use of some of the amenities. Furthermore, we would also have to pay Adi a salary for looking after Sebastien. And as Adi didn’t have his own home or transport in Bali, we would also have to factor in these costs. After totalling all of these costs and looking at the lower rental prices of full-fledged villas that we could rent in Bali, Jerome and I decided that it was worthwhile for us to take the leap of faith and strike out on our own.
With one week to spare before our departure in order to meet Sebastien’s August deadline, we dispatched Adi to visit the villas that we had identified in our online searches and identify places where we could buy supplies to cater to Sebastien’s needs. Furthermore, upon learning that we were going to settle Sebastien in Bali, Ibu Surya and Martina invited Sebastien to join the school for activities before it closed for a two-week holiday. Although I was not sure if Sebastien would be ready to be introduced into a brand new community amidst this transition, their warm and confident invitation buoyed my spirits, heralding a new beginning for us.
There was just one thing left to do.
It was triggered by a WhatsApp exchange I had with Dina, an acquaintance from a long time ago, who had met Sebastien back when he was just eight years old. In response to my self-perception as a failure for having to move Sebastien overseas, Dina offered a completely opposing perspective. She summed up our homeschooling journey in five words: “You have done your job.” As Dina pointed out, Sebastien would not have grown up to become a young man who could lead an existence independent of me, if not for our homeschooling journey. Instead of dwelling on what had gone wrong, I should take pride in what I had accomplished.
As with Martina, Dina had shown the extent to which my overwhelmingly negative perspective of my situation with Sebastien had blinded me to the positive aspects. Thanks to this revelation, I decided that I needed to reframe our pursuit of the Bali solution in a positive way to Sebastien.
Back in January, before we headed to Bongabon, I had told Sebastien that his negative behaviour had made it too hard for Jerome and me to take care of him. But this time around, I wanted to have a conversation with him, which focused on his strength.
Using the iPad to help me convey my thoughts, I ushered Sebastien to our mustard-yellow couch, where we had had countless iPad conversations. But to me, this would be the most important conversation we would ever have on it.
“Come here, Sebastien. Mama wants to talk to you.” I patted the space next to me. He came over readily. I believe that he could already sense something in my tone of voice.
Fighting back tears, I beamed at him, before typing on the iPad and reading out loud what I should have said a long time ago to him: “I want you to know that mama is very proud of you.”
I handed the iPad over to him. He read my message out loud in his usual monotonous voice.
“Do you understand?” I typed.
He replied, “Yes.”
I laid aside the iPad, so I could gaze at him and squeeze his hands. He squeezed mine back.
“I am very proud that you can take care of yourself. You can cook, you can mop the floor, and fold your clothes. You are also a good painter and a speedskater. You can do many things.”
“Yes,” he replied quietly, holding my gaze.
“You are a big young man now. It’s up to you to be a good young man. Mama believes in you. And Mama and Jerome hope that you will be happy in Bali.”
“Yes. Happy. Bali.”
I leant forward and we hugged. It was nice to share this beautiful moment on this mustard-yellow couch that had been shoved roughly on many occasions when Sebastien had pounced on me. And as I held him in my arms and felt the warmth of his body, I also cherished the peace that permeated this tiny flat that had been rocked by so many stressful meltdowns. This “talk” was the perfect send-off into the unknown.
* * * * *
On August 27th, 2016, we flew to Bali with all of Sebastien’s essential belongings packed into two large suitcases that we had expressly bought for this occasion. At that point, we still didn’t know what awaited us over in Bali. So many things could still go wrong — how Sebastien would feel about Adi, the school, and his home.
The Bali solution was still not cast in stone.
