Week 12 of Serialization: Where Does My Autistic Son Belong? Chapter 12: To Go or Not to Go
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 12
TO GO OR NOT TO GO
(January — February 2016)
On the outside, we were back to Square 1. It was intensely frustrating to have the plan to fall through after investing in so much effort and undergoing so much mental and emotional duress. It was especially difficult to break the news to Sebastien. He had been dragged on a foolhardy mission that yielded no positive outcomes. Moreover, he had no say whatsoever in a matter that affected him more than anyone else.
Thus, it was little wonder that we experienced a residual fallout from the Bongabon solution. Despite appearing largely relaxed during his time abroad, Sebastien exploded just two days after our return, when he detected a slight crack on the toilet seat. Even though Jerome had removed the toilet seat to fix it in another room, he wasn’t efficient enough for Sebastien. While Jerome was working on the toilet seat, Sebastien proceeded to bang his head with his fists multiple times and slam the bathroom door repeatedly. With this episode, the happiness and the relaxation that we had experienced during the holidays dissipated. One week later, after I informed Sebastien that the Bongabon solution would not occur, he would smack his dance teacher, when her phone suddenly rang. She had forgotten to put it on the “silent” mode. It certainly hit home how high the stakes were in our pursuit of the overseas solution.
Strangely, despite these setbacks, I felt better than ever, for I had emerged from the emotionally-charged week in Bongabon feeling far less disempowered or helpless than I was before. During this period, I played out in my mind the details of how the transition process could be like. Exploring a new place and brainstorming alternative strategies and overcoming hurdles in an unknown territory triggered a “high” within me. This trip got me out of the rut of my daily existence with Sebastien in which I felt stuck and helpless. I realised that I didn’t need to just surrender to the circumstances and allow myself to be swept along by events beyond my control. To make this work properly, I needed to be an active and responsible planner and advocate for Sebastien’s interests. Furthermore, I had even tasted the grief of letting go of Sebastien, as my conversations with Verona transported me to a place and time when I wouldn’t be there for Sebastien. And the pain did not break me.
Instead of banishing it from my mind and wishing that it had never happened, I saw the Bongabon experience as an invaluable lesson learnt. I did not want to give up on what I now called the “overseas” solution. I was rummaging through the possibilities in my head, considering people I knew who lived in the region ranging from acquaintances to tour guides and factoring in the extent to which English was spoken in the country.
This was when I thought of Geraldine, a Filipino helper whom we knew really well. She was moving to Santa Rosa, a suburb not too far away from Manila, to start a catering business in July. Although she would not be able to look after Sebastien herself, she could look in on him. In the meantime, she would tap into her existing networks in the Philippines to help me find carers and accommodations for Sebastien. I pounced on this option immediately. And within 24 hours, Roy, someone from Geraldine’s Facebook cooking group, whom she barely knew, registered his interest in looking after Sebastien. It was almost too good to be true! I considered Roy’s rapid response to be a good omen that Philippines Take 2 could work out.
However, it wasn’t too long before we hit the first road bump. Whenever I tried to interview Roy via a video or even an audio call, I had to give up because of the poor Wi-Fi connection. In the end, I could only send him regular chat messages to explain the situation about Sebastien, in particular about his aggression. Regardless of whatever unpleasant things I said, Roy always responded in a taciturn way: “It’s okay. No problem.”
Because his limited responses revealed so little about him, I kept sending queries in my endeavour to know him. However, the picture that emerged was neither consistent nor promising. For instance, even though Roy had trained as a nurse, based on his resume, his previous work experience was at a restaurant and a call centre. Furthermore, when I asked Roy why he stopped working at the call centre, he complained of the long hours that were incommensurate with the pay. Finally, even though Roy had a son who lived with his ex-wife, he had remained unemployed for several months. In fact, he was willing to wait indefinitely for us to be ready to move ahead with the Santa Rosa plan without any sense of urgency.
All in all, Roy sounded a bit like a dead-bit dad who was not doing his part to support the raising of his son. His hobby of collecting things like Transformer toys did not make me feel any more impressed. But given the lack of alternatives, I kept Roy in the picture. In the meantime, I hoped to be able to find someone else more competent and relegate him to the role of the “muscle”.
At the same time, I explored rentals on the property websites and contacted rental agents. They were highly responsive, deluging me with photos of properties available. Many of them wanted a firm date of when I would be arriving to visit the places. However, I wasn’t able to provide them with a specific date as yet.
If it had been up to me, we would have jumped on the aeroplane the next day and gone to check out the listings and meet the carer. But Jerome was not at all ready to start this whole process again of looking for an overseas solution. Of course, he was right to be cautious and hesitant. This time around, with the absence of a carer whom we knew and a home, the prospect was even bleaker and riskier.
So I settled down. The Bongabon experience was still a raw and fresh wound that needed time to heal. Furthermore, we could not be flying in and out on expensive prospecting trips without careful deliberation and planning. We needed time to work out the Santa Rosa option. It was during this time that I came to forge a relationship with a property rental professional. Patricia stood out from all the others. When she read in my description that I was looking for a home for my adult autistic son and live-in carer, she was filled with concern about my “overseas solution” for Sebastien. I could sense her sincerity when she asked me, mother to mother, why I would be sending Sebastien away to live on his own. It was obviously not in her financial interest to dissuade me from pursuing the Santa Rosa option, but it was evident that Patricia was a mother and an empathetic soul first and foremost. When I explained about Sebastien’s behaviour, Patricia found it hard to believe that I was trapped in this predicament on my own without being able to rely on my family members to help me. After my experience of the closely-knit family with the strength in numbers in Bongabon, I could see why she might have difficulties relating to my life in Singapore.
With these open, no-holds-barred exchanges between two mothers, which took place over Viber, on a daily basis, the boundaries that separated two strangers who had never met each other dissolved away. To this day, I remained stunned by how Patricia quickly embraced Sebastien and me as her responsibility. She assured me that she would do her best to find a good home for Sebastien, as well as look out for a carer for me.
* * * * *
With the support of a newfound friend, who set my heart far more at ease about the Santa Rosa option, I began to view our life in Singapore as a temporary stint — a breather for us to recover and catch our breath before we tried again. I essentially “checked out” of our homeschooling life. All the aspirations I once had of preparing Sebastien to carve his niche in the outside world seemed to belong to another lifetime, to someone else. My priorities began to shift more towards supporting my well-being than managing Sebastien’s behaviour. To me, our Singapore stay was a waiting game and my objective was to get through it as unscathed as possible. As such, I began to streamline Sebastien’s life routines to minimise his exposure to the public and the possibility that he might get in trouble with the police because of his meltdowns.
Apart from easing my life with Sebastien, I also enrolled in a Brazilian Jujitsu (BJJ) class. Feeling bruised and beaten after years of encounters with Sebastien, the last thing I had wanted to do was to engage in martial arts. However, in my empowered state, I wanted to do something in response to Jerome’s stinging comment to me that he didn’t want to be my “bodyguard”. My expectation that he protect me against Sebastien’s meltdowns had been an underlying source of tension between us. Without admitting it, I knew that he was right. Certainly, it would be better if I could rely on myself. I had chosen BJJ under the advice that it was the most suitable form of martial arts for dealing with a “combatant” whom one wants to subdue, not hit.
Not wanting to be mistaken for a fighting aficionado, I stated my sole reason for enrolling in a BJJ class in my email to a studio with reasonable charges and flexible schedules. By the stroke of serendipity, John, the owner, was someone who could empathise with my predicament. With an adult autistic brother who also had difficult behaviour, John was enthusiastic about helping me to feel empowered in my predicament. Even though he was just a voice on the phone, I connected with him instantly.
If not for this initial connection, I would not have persevered with this class, for I could not have been more ill-suited for BJJ. In this BJJ class in which the students of different levels were mixed together, I stuck out like a sore thumb amidst the disciplined and committed students who were hyper-serious about mastering BJJ and rising up the ranks. While I came to class just once a week, they took advantage of the monthly bargain price of coming as often as they liked for a flat fee to attend more classes each week. Some of them even took part in competitions with great success. Others, including petite ladies, were practitioners of other forms of martial arts. Due to my lack of positional awareness and poor spatial-orientation capabilities (my deficit), I struggled to replicate the specific manoeuvres, with a precise combination of the limbs and body parts vis-à-vis those of the combatants. Struggling to keep up, I felt like an impostor in their midst.
John did his very best to assimilate me into this loosely-structured class that allowed for the organic inclusion of new students like me. With each class, he would pair me up with sparring partners of varying levels of proficiency. While the easier-going students guided me with tremendous patience, the more hard-core ones could hardly contain their frustration. I totally empathised with their perspective, for I felt embarrassed to be taking up their time in the class, when they should be pushing themselves with more challenging partners, instead of “wasting their time” with the eternal novice. Clearly, I needed to go there more than once a week, but making myself go once a week was already gruelling enough. What I really needed was a class strictly for the beginners, but John didn’t have one.
Nonetheless, with the help and encouragement of John and some of these students who came to know why I was attending the class through John’s discreet disclosures, I pushed myself to show up almost every week. This was no small matter, as every class ended with individual six-minute sparring sessions in which we were supposed to place our respective opponents in submission holds. Participating in these sessions always left me in a trembling mess. But they were the ultimate practice sessions for Sebastien’s meltdowns. As I grappled with a sparring partner, who was invariably stronger and more proficient than I was, my terror and anxiety would skyrocket. Unlike the competent students who were able to execute their moves with tactical calmness to conserve their energy, it wouldn’t take long before I was gasping for air, as I moved and flailed in my static of panic. My lungs would be burning and I would wonder whether I could continue. But then I would hear John calling out to me from the sidelines: “Breathe. Keep going. Don’t give up. You are doing good.” Even though I did not have the same aspirations of many of his students, John pushed me to have the same fire. Showing up in class each week was a constant reminder for me to fight for my relationship with Sebastien, to fight for my survival. So, regardless of how I fared during the class, or how wobbly my legs felt, I typically left the class in a spirited state of exhilaration when I exited into the cool night air.
While my weekly attendance was insufficient in helping to retain the moves, let alone retain their names, they did have the effect of toughening me up, both physically and mentally for interactions with Sebastien. Through these classes, I could already sense that I was no longer instinctively nervous when he came close to me physically. In my interactions with Sebastien, I was able to convey my confidence in my power and strength through my eyes and body language. I became comfortable with his overly strong hugs and affectionate roughhousing, without feeling threatened. I felt confident that I could break out of his holds and protect myself if he came at me. Even more significantly, with the dissipation of my fear, I also felt confident and comfortable about approaching Sebastien to check his reckless and impulsive moves. My sense of control had returned.
Sharing my gratitude for his support for me, John asked me pointedly: “If you have control over your son, why don’t you just have him stay here?”
I answered immediately: “He’s not happy here. I am looking for happiness for him.”
My certainty surprised me. I had moved away from the place of pure fear in my desire to pursue an overseas solution for Sebastien. While it was nice to have some control back over Sebastien, Sebastien was still unhappy and stressed out. Control was not the same as happiness.
Yet despite this certainty, having some control over Sebastien was intensifying within me the battle between giving up on the idea and pursuing the Santa Rosa solution. Even while I advocated for the Santa Rosa solution, I was not too thrilled about it. Unlike the Bongabon solution when we had someone on the inside making all the arrangements, the Santa Rosa solution was built from scratch. This time, there was not even someone whom we had met in person. We were really taking a huge risk…
But then something happened to remind me that having control over Sebastien was still not good enough because many things in life were out of my control.
* * * * *
February 23rd, 2016 should have been a good day. The hardest part of the day was over: we had taken Uber for dance class and returned without any difficulties with seatbelts or drivers. Sebastien also had a good time at his dancing class. All in all, this should have been a good day.
But when I approached the kitchen to get Sebastien a glass of water, I noticed that the countertop next to the stove was covered by a layer of water. The bottom of the cabinet just above the countertop was dripping. And when I opened the doors of the cabinet, I gasped. Water was gushing out of the pipe!
“PAINTING!” Sebastien shouted, pointing at the pipe. While I was completely distracted by this plumbing emergency, Sebastien had entered the kitchen and witnessed the situation.
“Sebastien, there’s water coming out of the pipe. You can’t paint it now.” I tried to explain.
“PAINTING!” Still pointing at the pipe, Sebastien raised his voice.
“Okay, okay. Painting,” I acquiesced, knowing that I was not likely to be able to comply.
What should I do? Then I had an idea! I went into his room to get his calendar to “schedule” the painting on a specific day. This was a tactic that could work to buy time and defuse the situation.
When I came out, Sebastien was pacing agitatedly between the living room and the kitchen. None of this boded well.
I took a deep breath and showed him the calendar: “How about Thursday?” Two days of delay.
“PAINTING TUESDAY!” Sebastien screamed. Today. It was too late. With this furious scream, he started to bang his head.
I fled into my bedroom. Within the safety of the room, I managed to still my nerves sufficiently to call out the public housing authority to report the problem. I was told that an officer would be sent out to investigate the situation. After that, I called Jerome. Without some backup, I was essentially trapped inside the room; thus I wouldn’t be able to step out to open the door to let the officer into the house without endangering myself. At that point, I couldn’t tell which of the events would happen first — the arrival of either Jerome or the public housing officer, or Sebastien calming down.
With the app on my phone, which was linked to the surveillance cameras in the house, I could see Sebastien. He was a caged animal strained against its confines. Running back and forth from the bedroom to the living room, he was screaming at the top of his lungs and slamming his head with his fists. Through the closed door, I could hear the unmistakable sounds that resembled the basketball bouncing on the pavement. At the same time, he opened and slammed the front door shut over and over again.
Inside my head, I was screaming: Why is this happening to me? This pipe had had a slight leaking issue 18 months ago. Back then, the public housing officer had ordered a quick fix to seal up the leak. This was meant to be a temporary measure; he informed me that I was eligible for a subsidised replacement of this pipe, which would be available in two months. It never happened. And of course, this situation completely slipped my mind.
The phone rang. It was the public housing officer: “I am sorry, but I cannot come in.”
“I know. It’s my autistic son. He’s very upset.”
“Yes, I can see and hear him.” He sounded frightened.
I wanted to tell him, Yep, this is what happens when you guys don’t do your job properly. As it turned out, he was not the public housing officer in charge of my block, who had been responsible for this oversight. This officer was just a stand-in for the day.
“Well, I can’t even let you in. I have locked myself in the bedroom.”
“It’s okay. I can go upstairs to check first.”
By the time Jerome had arrived, Sebastien had entered the “crying phase” of his meltdown, characterised by the inconsolable gushing of tears that could last as long as 45 minutes. Since taking the Quetiapine he had been prescribed from the hospital, Jerome and I noticed that Sebastien’s meltdown would end with an intense crying spell. Although it would be difficult to determine the existence of this connection, Sebastien’s taking of this medication certainly did not lower the intensity of his outburst.
Nonetheless, now that Sebastien had disintegrated into the watery mess and Jerome had arrived to console Sebastien, I could gather my thoughts to decide what to do next before coming out. There was one more person to contact: Jimmy the Handyman, who lived just behind my block. Jimmy was no ordinary handyman, but a devoted Buddhist who had become well-versed in chants after a life-changing encounter with a monk whom he looked up to as his spiritual master. Even though Sebastien was typically unhappy with visitors in the house, he understood readily why “Uncle Jimmy” was coming, usually to fix something that was broken. And I would never feel nervous about unlocking the door to let Jimmy in. With his down-to-earth and laid-back self, Jimmy brought with him a stabilising aura that would settle over the household.
Apart from being a highly-skilled craftsman whose proficiency was greatly appreciated by an untrained eye, Jimmy would also share illuminating insights about life through his spiritual lens, while he would be wrapping tape around a pipe or installing a doorknob. In particular, I was intrigued by his perception that people like Sebastien occupied the highest level of spirituality. Untainted by the affairs of the materialistic world, they were perpetually in a meditative state. According to Jimmy, the rest of us “ordinary people” would be lucky if we could maintain this state for 10 minutes each day. Despite his practice of meditating up to two hours a day, he lamented that he would not be able to retain the level of peace he aspired to.
But Jimmy didn’t just talk the talk. He was even able to connect directly with Sebastien, despite their limited interactions with one another. Two years before, Jimmy had a special moment with Sebastien when I had asked him to come over to install surveillance cameras in the house for me to monitor Sebastien’s activity during my absence. This was about one month after Sebastien, Jerome, and I had appeared in Joy Truck. This 45-minute Chinese TV programme featured worthy causes and provided opportunities to help individuals and organisations. Offering glimpses into my challenges as a mother of an autistic youth, it also showcased Sebastien’s multiple talents of painting and speedskating. In fact, as the filming of the episode took place around Sebastien’s birthday, the producers even bought him a pair of speed skates, apart from exhibiting his artwork in an art gallery. The reaction to our episode was instantaneous the moment it aired. Strangers called to buy his paintings, lauded his ability to skate, and encouraged me with words of kindness.
Although Jimmy seldom entered within the vicinity of Sebastien, he came towards Sebastien, who was sitting cross-legged on the cushion on the ground, with a big smile that day. Leaning towards Sebastien’s face and kneeling on the ground, Jimmy spoke softly to Sebastien in an intimate whisper. Despite his usual reluctance to talk in English, Jimmy was unabashed about using his heavily-accented English to tell Sebastien about seeing him on television and praising him for his amazing abilities. Instead of pushing Jimmy away, Sebastien maintained this closeness and held Jimmy’s gaze. The two looked into each other’s eyes for a good minute. This spell-binding moment left me speechless and I knew this handyman who always referred to himself humbly as an uneducated blue-collar worker was able to connect with Sebastien in a way that I wish I could. From then on, in my mind and discourse with others, I would refer to Jimmy as “my spiritual master” and my handyman. Sebastien and I even began to do spiritual chants that he introduced to us upon my request.
I believed that it was thanks to Sebastien that Jimmy treated my work as a priority, doing his best to come over as soon as possible, or giving me the best advice on what to do. So on that evening of the pipe leakage, I did not hesitate to ask him to come over to paint the pipe. He was reluctant at first: after all, as the pipe was wet, the white paint would flow away. His explanation only confirmed the limits of Sebastien’s unreasonableness, which only made me burst into tears: “I know, I know. It doesn’t matter. Sebastien wants it to be painted. He banged his head and is now crying. Please just come. Sebastien needs to know that it is fixed.”
“Okay. I will come as soon as I can.”
I could hear the grimness in his voice that contrasted with his usual cheery voice. He understood his task for the night. No ordinary handyman would have wanted to perform a job that made no sense just to appease an autistic person. And only he would be able to pull it off with ease, which would convince Sebastien that the fix was done. Perhaps, more than anyone else that night, Sebastien needed “Uncle Jimmy”.
Only after making all these arrangements did I sit down on the ground to cradle the howling Sebastien in my lap. His face and body were flushed red and hot to the touch. It was heart-breaking. That was when I told Jerome to film us and take photos. At that moment in time, I wanted the government authorities to see the devastating outcomes of their incompetence and negligence. I planned to email them to the Prime Minister’s Office. In the tiny city-state of Singapore, writing to the Prime Minister was the most direct route to getting the relevant authorities to act.
Sebastien’s tears finally petered out when Jimmy arrived.
“See, Uncle Jimmy’s here. He’s painting.”
Sebastien lifted up his head slightly and said “Painting” to Jimmy who walked by with a little discreet nod. Then Sebastien sank back into my lap, completely drained from his emotional outburst. It was important that Jimmy was left alone to do the job as best as he could. From the living room, I could see Jimmy doing his best to wipe away the wetness of the pipe over and over again before painting it. As I would learn later from the public housing officer, the severity of the pipe leakage had been triggered by the execution of a massive commercial cleaning operation in the flat upstairs that was just vacated. As the operation had stopped for quite some time, the leaking would have died down significantly by then.
Later that night, I would send off an irate email to the Prime Officer’s office with the photos and the videos taken earlier. In fact, it would ultimately lead to us working closely with the manager of the branch office to get the pipe replaced at a convenient day when we were out of town. However, even that night, despite feeling good about my advocacy for Sebastien, I still felt frustrated and useless in the face of a life of putting out one fire after another till the end of our lives. Fixing the broken pipe would not change the life of careening from one crisis to another with Sebastien. Regardless of what I did to try to feel more empowered about the situation like taking the BJJ classes or even writing to the government authorities, I was ultimately helpless in protecting Sebastien from himself.
* * * * *
The next morning, Jimmy returned to fix the door latch. At the time, I had presumed Sebastien’s relentless slamming of the door had broken it. Days later, when I chatted with my Indonesian neighbour with a kindly disposition towards Sebastien, I learnt that she had walked by along the corridor on the day of the pipe leakage, while I had stayed inside in the room: “He didn’t break the door. He was trying to show me that the door was broken. But I couldn’t see. Then he started to bang the door. But I did not know where you were.”
This additional piece of information could explain the extent of Sebastien’s explosion. I began to rummage through my mind whether he had mentioned “door” to me and I had not realised it. Come to think of it, the door hadn’t been closing very well before the pipe leakage day. Thus, it was likely that the pipe leakage was the additional broken and unfixed item that Sebastien couldn’t deal with. Of course, this was just a possible interpretation of what had happened from Sebastien’s perspective. It was not often that we got to piece together the full puzzle of what happened inside his mind.
One of the challenges of living with a largely non-verbal autistic young man was this endless guessing game of trying to figure out what he was saying, what he meant, what was important and what was not. Often, you would only gain some insights after an epic meltdown had happened, which would have illuminated the importance of something that you didn’t know was so crucial to Sebastien. Although I knew that living a life like this was not easy for him, it was just as hard to be the recipient of the manifestations of his distress, which had become increasingly terrifying and painful.
Empathising with his predicament and acknowledging his frustration were inadequate in countering the potentially devastating outcomes for us, including Sebastien.
Thus, I had the catalyst I needed that morning when Jimmy meted out his words of wisdom in the midst of laying out the different parts of the door handle he was replacing on the floor: “Your son is growing bigger and bigger. You cannot continue to live here with him in this small flat, in this small life. As long as you are around, Sebastien will cling onto you.”
He sighed, as he continued, all the while putting together the parts of the door handle: “I am not saying that it will be easy. It’s going to break your heart. But you need to harden your heart and let him go so that he can grow up.”
I listened intently. It was the first time that someone had laid out the case for the pursuit of an overseas solution for the sake of Sebastien so powerfully. I was relieved to know that I wasn’t acting out of self-interest. Furthermore, when I told Jimmy about our misadventure at Bongabon, he nodded approvingly: “It sounded like a place that could have worked for him. He needs a bigger space and more people in his life.”
With these words, the pendulum that had been swinging from side to side of what to do — to move Sebastien to the Philippines or stay in Singapore — swung towards the former end. That night, when I saw Jerome, I simply said, “My spiritual master had spoken. We need to make this second Philippines solution work.”