Week 13 of Serialization: Where Does My Autistic Son Belong?
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 book on Medium (please see the links below for all the previous chapters serialized to date up to Chapter 12):
CHAPTER 13
TAKE 2: SANTA ROSA
(February — March 19th, 2016)
One thing stood in the way of me pushing forward with the Santa Rosa solution: Roy, the would-be carer for Sebastien. Despite weeks of back-and-forth communication, always initiated by me, to share information about Sebastien, such as his latest meltdowns, Roy remained a huge question mark. When I had asked him why he had wanted to do this job that had some decidedly unpleasant aspects, Roy had given the politically correct, but vague, answer, “I want to help Sebastien get better”, without any elaboration. Somehow, it was hard for me to shrug off the feeling that he was just doing it for the money. Money should never be the chief motivation for anyone working with special needs individuals. I don’t think that you can get paid enough for some of the hardships that you might encounter.
The only good thing about Roy was that nothing I said about Sebastien, including the detailed description of the pipe leakage incident, fazed him. Whenever I asked him pointedly about his perceptions of Sebastien within the context of these episodes, his reply would invariably be “Fine, no problem.” But this was yet another vague answer, which I didn’t find convincing.
One thing was certain. Roy was no substitute for Lucinda. It looked as though he would play the part of Marco in the Bongabon solution, which meant that I still needed to find a partner whom I could trust. But despite getting a few responses from my online advertisements, no convincing candidates emerged.
I was at an impasse. Even though Jerome was now on-board, I still didn’t feel sufficiently confident to move forward.
But then a solution presented itself in the most spontaneous and organic way. All this while, as I reflected on our options, my relationship with Patricia was progressing. Not only was she looking for a place for me, but she was also checking in on Sebastien and me via Viber every day. I shared with her the not-so-bad days and the downright bad ones. It was comforting to receive her words of encouragement and her constant delivery of sweet emoticons of flowers and hearts. Her unwavering attention that went above and beyond someone looking for a home for us moved me deeply. Even though I had never met her, she was like a girlfriend I never had.
Through our daily exchanges in the evenings for close to two months, I also became very impressed by Patricia’s remarkable capacity to juggle both her professional and personal lives. With an estranged husband who provided occasional financial support, Patricia managed to raise her children on her own as a single mother. She was even a very young grandmother in her early fifties. One of her responsibilities was to look after her grandson when her daughter had to work. Nonetheless, she didn’t seem at all weighed down by the full plate in her life. Keeping herself fit and dynamic with a weekly session of Zumba, Patricia wasn’t too shy to post photos of herself looking beautiful with well-coiffed wavy hair, wearing a body-hugging swimsuit with her children by her side, in the photos on Facebook. Through these photos, you could tell that she was a vibrant and warm-hearted individual who fully embraced the feminine and the motherly aspects of herself.
Besides, Patricia also had an atypical 18-year-old son, called Mateo, who was taking a homeschooling course, as he had struggled to get along with his peers at school. Patricia even experienced an episode in which Mateo had shoved her to the ground in a fit of anger. Although this was an isolated episode, it helped Patricia to relate to me. She was thus not a complete stranger to the travails of raising an atypical teenager.
Throughout our communications, no matter what I said about Sebastien, Patricia would always respond from a place of love and concern for Sebastien than fear for his actions. In my mind, she would have been the perfect carer to whom I could entrust Sebastien. To me, our connection with one another forged an invisible, but powerful, link, from one mother to another, allowing my love to “travel” across to her, without me ever needing to reiterate the love I had for Sebastien. I felt that Patricia possessed the intuition and the vast capacity for love to grasp the complexity of my situation with Sebastien. Moreover, she felt up to the challenge of caring for Sebastien.
Patricia told me that she had the same thought. Resonating so well with me, she would have wanted to look after Sebastien so that she wouldn’t worry about him being so far away from me. Unfortunately, her plate was already too full: someone had to be home to look after her grandson. Lamenting that she could not help me to look after Sebastien herself, Patricia sought out Joy, a trusted female friend. But Joy was utterly intimidated by the prospect of looking after Sebastien. Even Patricia’s reassurance to Joy that she would just be a phone call away did not assuage the latter’s fears. I understood perfectly.
However, Patricia’s suggestion to her friend gave me an idea: Why doesn’t Patricia look after Sebastien, while Joy helped to look after Patricia’s far less challenging grandson? Patricia leapt at the idea. It was a win-win solution while providing Patricia with a supplementary source of income. Suddenly, the Santa Rosa solution became a far more exciting prospect. We even did a Skype call together and weaved fantasies about a shared future life between Sebastien and Mateo, in which the two atypical boys could be friends with one another. This was the breakthrough that I needed to make me believe in this potential new life for Sebastien.
And when I told Roy about this new development, which meant that I would be reducing my proposed salary to him by almost half, he responded: “Okay. No problem.”
With my mind at rest, the date — March 16th — was set for the recon trip to Santa Rosa. Take 2. The plan was in motion
* * * * *
With complete confidence in Patricia and thus the Santa Rosa solution, I launched into serious preparations for our second recon trip. Essentially, I put together a detailed training manual that was meant to prepare both the novice carers of Sebastien to take over from me. I hoped that my careful preparations would provide the carers with as much information as possible to make the transition a smooth one for Sebastien.
Putting together a comprehensive training manual about Sebastien was more than just a cognitive exercise that tested one’s stamina. It was also a deeply emotional experience that gave me the distance to recognise all the love and effort that Jerome and I had put into raising Sebastien over the past decade.
Particularly since Jerome’s entry into our life, Sebastien’s horizons had expanded through our amazing trips abroad to Indonesia, Myanmar, China, Thailand, France, India, Australia, and Norway. To our surprise and delight, Sebastien rose to the challenge of hiking on narrow ridges perched above hot springs even though the steam blocked one’s vision of the path forward; springing up Southern Alpine mountains carrying a backpack loaded with water; and clambering up boulders adroitly in Western Australia. Even the chaotic city streets of Calcutta and our changing itinerary due to unpredictable events did not faze Sebastien. In ensuring that Sebastien could be a part of these experiences, we had had to put up with the stress of worrying about whether Sebastien would break things in a hotel, scrape off identifying labels, or soil beds seemingly on purpose.
With his life in Singapore, I had also done well to create a well-rounded life for him. Sebastien had been exposed to academic learning, physical activities, art, music, colouring/painting, and life skill training. Despite all our difficulties, he grew up to become a young man who possessed diverse interests and passions, as well as the ability to look after himself and the household with minimal support. I had worked hard to cultivate his learning and experiences. These were no small achievements. I could take pride in what I had accomplished, however foreign such an emotion had come to feel in recent days.
On the flipside, the many “do’s” and “don’ts” of this training manual also captured how troublesome and complicated life with Sebastien had become. For instance, Sebastien carried a cap and a small cushion in his hands wherever he went. Whenever he sat down, he would place these items on the chair and sit on them. I can no longer recall when the cap stopped being something that he wore and the cushion that was meant for him to squeeze came to play the role of being sat on. More significantly, neither of these items could be lost. If he lost them, the onus was on me to find it or there would be a meltdown. Therefore, there was much for me to acquaint the carers about Sebastien’s expectations and his preferences about how the world should function:
· All seatbelts should be laid out properly and useable, whether he wanted to use them or now;
· Everything mechanical should be working properly or fixed instantly;
· Head-rests of all seats should be pulled all the way up; and
· Stickers and labels should be removed from all surfaces.
This was just a small sampling of how things in the world should be according to Sebastien.
Knowing about these specifics was important for the carers to determine whether they should endeavour to interfere with Sebastien and risk dealing with a meltdown or just letting him do what he wanted. I wanted the carers to know about the possible consequences and have the freedom to decide what to do. After all, I hadn’t always been able to respond in the most effective way.
Thus, the manual also included a section on the different options the carers had to respond to Sebastien’s meltdowns based on our previous experiences. If they felt brave and strong enough, they could step forward to try to stop Sebastien from injuring himself, though doing so came at the risk of being hurt. Or if they were frightened and wanted to protect themselves, they could lock themselves behind closed doors. Having done both, depending on how brave I was feeling at the time, I did not really want to impose my preference on anyone. After all, having been attacked countless times and suffering the uncomfortable aftermath, I could empathise with their desire for self-protection and self-preservation. It was important to let them know that I didn’t bear any unrealistic expectations about their care for Sebastien — whatever I wasn’t prepared to do, I didn’t expect others to do.
As I proceeded along the completion of the training manual, the prospect of my separation from Sebastien became very real. And despite having gone through it once with the Bongabon option, the grieving process felt even harder this time around. At this point, the part of me that had wanted to flee from Sebastien with gladness had disappeared. Whenever Sebastien had a spell of good behaviour, I would question the need to embark on this course of action. I was constantly rocked by see-sawing emotions that could not be dispelled by Patricia’s feisty enthusiasm about seeing us soon and meeting Sebastien. Performing daily routines involving the care of Sebastien turned into a sentimental exercise. Seeing a beautiful painting produced by Sebastien would bring tears to my eyes. It was hard for me to imagine that I would no longer get to feel that leap in my heart when I witness his creation for the first time. Who could cherish them as much as I did? Even washing the containers of his midnight snack could make me break down and cry. However, all the sentimentality would disappear when Sebastien banged his head or stressed me out with his compulsive behaviours. That was when I would be reminded once again of why we were all heading to the Philippines for the second time.
At the same time, the toll of our life with Sebastien was also escalating to the point that my relationship with Jerome was under severe siege. I still remember the day when this typically calm man blurted out his frustration at me: “I wish you would stop yelling at me every time you talk to me.” Until his outburst, I had not noticed that I had been doing that. But he was right. Whenever Sebastien did something wrong or exploded, the fault laid with either or both of us. Either we should have read the situation correctly and responded correctly, or we had failed to anticipate his needs or taken the necessary precautions. Thus, I was engaged in a never-ending story of finger-pointing at Jerome and self-bashing.
Of course, during “normal” times, I might have recognised the horrible toll that my behaviour was placing on our relationship. However, these were not “normal” times and they hadn’t been for a very long time. The emotional intensity of my life was magnified a thousand times, which made me feel that I was operating at an entirely different level. I was about to hand the care of my son over to complete strangers in a country I barely knew. There was a stranger in the Philippines who had taken a tremendous leap of faith to look after Sebastien, even after I had told her that he could be aggressive. I resented the fact that Jerome seemed more concerned with going about his affairs as though this seismic shift in our life was not about to happen. My perceptions further amplified the gulf between Jerome and me.
As March 16th approached and the Santa Rosa solution loomed before us with a concreteness that I could not dismiss, my resentment towards Jerome began to morph into acceptance and sadness. In coming to terms with letting go of Sebastien and the impending loss of our unconventional family unit, I even considered the possibility that my relationship with Jerome would end as a result of this transition. Confronting the prospect of losing Jerome in the process made me see him from a very different vantage point. It made me realise the mountain of expectations that I had dumped on his shoulders. Perhaps, like a damsel in distress, I had even unconsciously wanted him to be the hero who would swoop in to come and save the day. I hadn’t been fair to him for a long time.
Once upon a time, Jerome had joked that the perks of being in a relationship with me were that “there was never a dull moment”. Couched as a light-hearted summation of life with Sebastien and me, it belied the amount of effort and love that Jerome had invested in our life together. More than anyone else, Jerome had selflessly sought to bring happiness to Sebastien and me. Throughout the havoc of the past five years, this selfless man who had entered our life four years before had stood by Sebastien and me. I wished we could have been more worthy recipients of his love and reciprocated it with the appreciation that it deserved. Instead, it had become just one nightmare after another. Exiting from Jerome’s life and taking my struggle with Sebastien along with this departure would be an act of love. Weeping copious tears, away from Jerome’s gaze, I sought comfort in the fact that, even if our relationship ended as a result of this transition, I would at least have given Jerome back the life that he once had as a bachelor. He would be free to pursue his interests and social life.
All these layers of grief hung over me, as we headed for Take 2 of the overseas solution.
* * * * *
I had high expectations for the Santa Rosa option. It was supposed to be the overseas solution. On paper, we had the carers and a house; the huge unknown was the nature bit. Once again, based on what I had seen and read on the Internet, the nature was not particularly enticing. Still, I wanted to give it the benefit of the doubt.
Unfortunately, I became quickly disillusioned about Santa Rosa. Although Patricia who was at the airport to greet us with her effusive warmth and friendliness was as wonderful as I had expected, my initial enthusiasm quickly turned cold. Our hotel was situated not far away from an artificial and meticulously-landscaped strip mall. It featured brand-name retail stores, high-end restaurants, impersonal office buildings, and cycling lanes — entertainment targeted at upper- and middle-class families. This place was so lacking in character that it could have been airlifted and plonked down anywhere in any country. Santa Rosa, with its hollow modernity, just came across like a B-grade version of Singapore, with the food items at the nearby supermarket even more expensive and of far lesser quality than those in Singapore. With its air of superficiality and impersonality, Santa Rosa seemed like the very opposite of what I sought for Sebastien. Yet, we could sense that for the locals, including Patricia, Santa Rosa was a cosmopolitan suburb with tremendous appeal. For us, it was a step down from Bongabon that had more of a feeling of a village community. That was what we felt would have been far more ideal for Sebastien.
Even the three-bedroom house that Patricia said was ideal for Sebastien and Roy, which was already at the high end of my budget, turned out to be a disappointment. For a start, it was a lot smaller than I had hoped. I had always thought that our 67 square-metred flat in Singapore felt like a cage for Sebastien. This house did not seem a whole lot bigger. In fact, what Patricia had touted as the third room was actually a searingly-hot attic where one could not stand upright without bumping one’s head. This poorly-insulated house also needed serious air-conditioning to ensure that its inhabitants could survive the hot afternoons. Even as Jerome discussed with the owners about adding insulation to the roof, I was already dismissing it from my mind. It was too small, too hot, and too stifling. Altogether, it was a claustrophobic house that I could already visualise bad things happening with Sebastien. I had to step out quickly with Sebastien for some air. The trip was not at all going the way I wanted it to go.
However, what ultimately determined the fate of the Santa Rosa solution was Roy. From the moment Roy showed up to meet us in the hotel lobby, he was an unconvincing candidate. When we shook hands and greeted each other, I could see no spark of light, interest, or energy in his small, squinty eyes. Mumbling under his breath when he spoke, Roy was just as taciturn and reserved as he had been in our WhatsApp exchanges. Even when I tried to initiate him into an interaction with Sebastien by showing him how to apply sunblock on Sebastien’s face and arms, he rubbed the cream on Sebastien’s skin stiffly, making minimal effort to connect with Sebastien with words or touch. Unlike Lucinda who oozed with enthusiasm and sought to prove her worth from the get-go, Roy seemed almost too lazy to try.
Nonetheless, I told myself to suspend my judgment. At the very least, Roy had the physique to handle Sebastien’s outbursts. Though Sebastien towered over by him by half a head, Roy was a lot stockier with a thick neck, solid torso, and large arms.
Yet, trouble occurred at our very first “recon” stop to see where we could buy the art and stationery supplies that Sebastien typically used. In front of a bookstore, Sebastien insisted on scraping off a sticker on the pavement. At that moment, I informed Roy that this was not something that we would fight Sebastien about and stepped into the bookstore. I thought the situation was settled. That was why I had gone in, without even looking back.
Suddenly, I heard the familiar sounds of head-banging. What has happened? When I turned towards the door, I could see Jerome, his face flushed red with suppressed anger entering the bookstore, followed by Sebastien, and then Roy who lingered at a distance.
“What happened?” I whispered, my eyes widening in a query.
“Nothing,” Jerome gruffly answered, “He didn’t listen. He tried to stop Sebastien.”
“B-but I told him not to…”
“Well, he didn’t listen. Just forget it.” Jerome walked away, wanting to move on from this setback. He was right. There was nothing we could do about it.
Take a deep breath, I told myself, give the guy a chance. This is just the start of the day; it can still turn around for the better.
Making the best out of the situation, I decided to treat the episode as an opportunity for Roy to learn from his mistake. After all, this was the first time that we were meeting Roy, who was getting an authentic experience of what it was like to be with Sebastien. For a novice to make a mistake early and then to see Sebastien when he was not at his best could be considered an instructive initiation into the job.
So back in the car, when we were travelling to the next destination, I spoke in earnest to Roy about the situation at the bookstore and clarified our expectations: “With Sebastien, you have to know when and how to step in, particularly when you are outside, because there are other people to think about. Of course, it is okay for you to make mistakes and Sebastien gets angry. You should tell us about it so that we can maybe give you some ideas about what you can do. Honesty is very important. If something bad happened, we want to know about it. Because we are far away, we are trusting you to tell us when things go wrong. Okay? We are all learning to look after Sebastien. With time and more experience, you will become better at taking care of Sebastien. Do you understand?”
“Okay,” Roy muttered with the same woodenness and absence of feeling as before. I looked out the window; it was getting hard to suppress my growing distress about him.
Roy’s standoffishness continued when we left Sebastien with him at the shopping mall, while Jerome and I tried to get a SIM card at a shop nearby. When I stepped out to check on them, I noticed that Roy and Sebastien were standing far away from each other. Neither was looking at the other. They were clearly not clicking.
The tension was slightly dissipated when Patricia, radiating positive energy and projecting her usual warmth, joined us with her son, Mateo. After a late lunch together, Jerome proposed that we visited the natural environs of Santa Rosa — the Tagatay Ridge — to give Sebastien a break from the city centre and the visits to potential homes. This was the third element of an overseas solution. Given how disappointing our first day was going, it had to be close to perfect to restore my flagging belief in the Santa Rosa solution. I could tell that Jerome was getting fed up with this recon trip and worried about Sebastien. Inwardly, I was also struggling with my dismay at the unfurling of the Santa Rosa solution.
The Tagatay Ridge was known as the viewing point for the Taal volcano, the world’s smallest volcano. Although there were a few attractive photos of the Taal volcano on the Internet, we arrived at a park with a wide asphalt path that was flanked by straggly trees and a litter-strewn dirt path. Putting Sebastien in a place strewn with litter was like drawing bees with honey. It didn’t take long before Sebastien’s hands were full with pieces of garbage from cigarette butts to plastic bottles. Rummaging through our backpack, I managed to find a large garbage-sized bag. As it was windy on the ridge, it was hard for Sebastien to ensure that the bag stayed open for him to place the litter in it. Thus, the picking of litter would be a two-man operation: one to do the picking and the other to hold the bag open, while the former deposited the piece of garbage into the bag.
In my mind, this task offered the perfect opportunity for Sebastien and Roy to bond together. This shouldn’t be too hard since Sebastien was doing something he enjoyed. At the same time, doing this activity also constituted a simple test for Roy. It was a test designed for him to ace, which would give all of us a boost of confidence to keep my flickering hope of the Santa Rosa solution alive.
Leaving Roy and Sebastien on their own, Jerome and I moved ahead of our original party of six, which had since become split into several groups. There were Jerome and me leading the pack, followed by the pairing of Sebastien and Roy, and Mateo who made up the tail end of our little entourage on his own, as he was walking up the hill very slowly. Patricia had opted out of the hike; she was resting at a pavilion.
Just minutes later, the distinctive screams of Sebastien — the chilling ones he typically emitted during a meltdown — broke out. Jerome and I were just about to stop to wait for the others. From a distance, I could see Sebastien pounding his fists angrily at Roy’s back. Instinctively, I rushed down the hill towards Sebastien who then started racing uphill towards me. Just as I was bracing for Sebastien’s assault, Jerome came from behind to intercept Sebastien and redirected him towards a tall bush, effectively disrupting the momentum of Sebastien’s rage. Throughout this commotion, Roy just stood there. If not for Jerome, I would have gotten hurt.
After Jerome’s interruption of his rage, Sebastien burst into tears. At this juncture, he was still taking the psychiatric medication whose only noticeable impact on Sebastien’s meltdowns was that he would end up crying for a long time. So for the next 45 minutes, I cradled Sebastien in my arms on a bench, while he wailed and wept inconsolably. I could feel the stares of passers-by as they walked past us, possibly wondering why this young man was crying like a baby on my lap. Based on our objective of finding a better life for Sebastien, this expedition could not have led to a worse result. With Sebastien unleashing his agonising cries that stabbed at my guilt-ridden heart, I wished that we could have been magically spirited home right there and then, away from this foreign environment that had not been worth our time. This place couldn’t have been more wrong for Sebastien.
I felt like a fool for pushing the Santa Rosa solution forward and believing that it could have actually worked. In my enthusiasm for the relationship that I had built with Patricia, I had ignored how pivotal the role of the male carer was. After all, Roy would have been the one to handle Sebastien’s meltdowns and ensure the safety of Patricia. In other words, he could make or break the Santa Rosa solution. Regardless of how enthusiastic Patricia was, the Santa Rosa solution could never have worked without a strong male carer.
Through my film of tears, I could make out Patricia. She was standing at a respectable distance, not wanting to encroach into our space. I could hardly make any form of contact with her: she seemed to belong to another world. For all her love and warmth, she could not extend her helping hand into our autism universe; it was an unbridgeable gap. When our eyes finally met, we both knew, without ever exchanging a single word that it was over. A potential plan and friendship that we had forged with so many words over the past weeks had become undone in one afternoon. At the end of the day, Jerome and I were still very much on our own in the autism universe. It was Jerome who ran over to help me and it was me who was now consoling Sebastien. Ultimately, we were still the only ones who could look after Sebastien.
* * * * *
Jerome and I didn’t outright dismiss Roy as a candidate because of what had transpired between Sebastien and him. After all, as we had both been hit by Sebastien before, we wanted to know what happened. Such episodes offered invaluable learning opportunities that could prevent future occurrences, or that was how we saw it. To be able to learn from bad episodes is an essential quality for a good carer. If Sebastien’s aggression had been triggered by external factors beyond Roy’s control, he would learn to pay attention to the presence of these factors. If he had done something to provoke Sebastien, inadvertently or not, then he would realise that he needed to act or react differently the next time.
While I was consoling Sebastien, Jerome had approached Roy to find out what had happened. According to Roy, Sebastien had attacked him when he had tried to help Sebastien open the garbage bag. He had a one-sentence account that was lacking in any details. Neither Jerome nor I was convinced by this account. However, regardless of how much we probed Roy to give us more information, he stuck to his version. Even Patricia wasn’t able to make any headway by speaking to Roy in Tagalog, their native language.
Since Sebastien was not able to give us an account of the episode and no one else had witnessed what happened, we were stuck with Roy’s minimalist account that made no sense to us. In the end, all we could do was to apologise to Roy and ask him if he was physically all right. He shrugged off Sebastien’s attack with a taciturn “It’s okay. I understand.” Although Roy came off as seemingly stoic and tolerant, his limited account that cloaked Sebastien’s outburst in a shroud of mystery actually placed him in a negative light. To me, a good carer would have tried to analyse what had happened. But Roy did not do this. Ironically, in the face of this vacuum, Sebastien’s strong adverse reaction to Roy “spoke” loudly against Roy. There was no way that we could hire someone whom Sebastien disliked so vehemently, without any extenuating reasons. With such an outcome, whatever vestiges of hopes that we had of the second Philippines solution were irrevocably dashed.
With this debacle, we changed our tickets for an early departure. Nonetheless, we took an extra day to take Sebastien to a nice beach and spent some time as a family to “recover” from this horrible experience.
However, just before our departure from the hotel the next day, Patricia showed up unexpectedly at the hotel, bearing some gifts, like stickers, for Sebastien. At the same time, she was clearly in an agitated state.
As we had suspected, there was more to the sorry Santa Rosa saga than Roy had admitted. Mateo, Patricia’s son, who had walked behind Roy and Sebastien had seen everything. However, traumatised by Sebastien’s reaction, Mateo had not spoken that evening. Unconvinced by Roy’s account, Patricia had coaxed the truth out of Mateo the next day. According to him, Roy had struggled to open the garbage bag for Sebastien to put some litter inside. However, when Sebastien looked angry, Roy had grabbed Sebastien by the shoulders from behind, perhaps in anticipation that Sebastien would attack him. This was what had triggered Sebastien’s aggression.
I felt sick in my stomach. It was not Roy’s misinterpretation of Sebastien’s behaviour and inaccurate reaction that bothered me so much as his blatant dishonesty. His dishonesty was of the worst possible kind because he had knowingly exploited a special needs individual whom he was supposed to be caring for. He had thought that he could get away with it because he knew that Sebastien could not “speak” for himself. Even before we had hired him, Roy was already betraying our trust in him and exploiting the person he was supposed to take care of. Without being there in person, I needed to be able to count on a carer to tell me the truth, however unpleasant or unflattering it was. Instead of letting us know the truth and embracing his mistake as a learning opportunity, Roy had chosen to lie.
Even more discouragingly, this revelation planted doubts in my mind about the viability of an overseas solution. Could I truly find carers whom I could trust to work with me to care for Sebastien? Beyond my sense of outrage, what I was also feeling was fear and anxiety. Since Sebastien was unable to describe what had happened in a way that most people could understand, he would just lash out in aggression, turning him into someone dangerous, even though he had started out being someone wronged…
* * * * *
In the end, all the grieving prior to the Santa Rosa trip would turn out to be for nought. The only thing that was “right” about the Santa Rosa solution was Patricia: she was as warm-hearted and loving as she had been from a distance. Everything else could not have been further from what I had hoped for.
Once again, we returned to Square 1 and the second round of recovering from the consequences of the debacle of the Santa Rosa solution. Sebastien literally did not sleep for a week. He became so high-strung and wound up during the day that he would yelp and jump suddenly, with no sense of restraint. At his regular dance class, he kept hovering so close to his dance teacher, while jumping up and down to his own rhythms, that I was bracing myself to sprint into the classroom at any moment to protect her from I-don’t-know-what-could-be-coming.
It would also take me about a week to get over the Santa Rosa solution. In fact, I would discover that surviving the emotional grinder of the grieving process and picking myself from the failure of the Santa Rosa solution built my stamina and pushed the limits of my capacity to grieve and love. Somehow, I felt calmer and stronger at the core of my being than before the Santa Rosa solution. Even though I was all out of answers for the next steps, I did not do any finger-pointing. Instead, I considered it a lesson learnt. It was futile to rush the process. Next time, I would need to be sure (as much as I could be) in the depths of my being about the carer and the place before leaping. This meant trusting my gut instincts about someone, instead of succumbing to desperation. After all, Roy’s character had set my warning bells ringing way before we embarked on the trip. There would not be another “Roy”.
At the end of the day, I took heart in my response to Santa Rosa. Much as I wanted to move Sebastien away from Singapore, I was confident that Jerome and I would not settle for something that did not feel right for Sebastien. It felt good to have a barometer of what would make an overseas solution acceptable for us. The sacrifices that we were making had to be worthwhile for us to go through with it. Somehow, this certitude made me feel that we were no longer operating in a complete vacuum.
And for a while, after the Santa Rosa solution fell apart, life returned to the tense and unhappy “normal”. At that point, Jerome had had enough of these recon trips that had led to nothing. Even I questioned whether I could ever summon the energy reserves needed to start all over again.
So as much as possible, I rallied myself to get through my days with Sebastien, however stressed-out or anxious I felt, without expecting Jerome to come to my rescue, unless absolutely necessary. In the meantime, my body awareness and movement had continued to improve thanks to my attendance at the BJJ classes. Even though I continued to be held back by my struggle to remember how to execute the BJJ techniques accurately, I had become strong enough to stand up to Sebastien, not because I thought I could “win”, but because I was no longer afraid to fight. And whenever I found my spirit flagging about my ability to cope with Sebastien, I would recall John’s feisty encouragement: “You cannot give up. Who else is going to be there for your son, if you give up?”
Nonetheless, leading a life with the “flight-and-fight” mode permanently turned “on” was a constant strain. I was always walking on eggshells around Sebastien, preoccupied with anticipating and averting his meltdowns of head-banging and aggression, or else coping with their aftermath. Pressure also came at me from other directions including neighbours who were disturbed by Sebastien’s singing in the middle of the night or his standing at the kitchen window.
His new obsession of going around touching every single car door handle of parked cars, while he was skating at the park, also led to people calling the police on him, because they thought that he was trying to steal cars. On one such occasion, Sebastien even experienced being handcuffed by police officers after he had ignored their orders to stop. Apparently, Sebastien had bared his teeth at them, which they had interpreted as a sign of aggression, though the reality was that Sebastien was scared out of his mind. Because Sebastien was unable to speak up and explain, he ended up being treated like a criminal, even though he had committed no crime.
We only learnt about all this when the police finally called me after seeing my contact number on the laminated card on Sebastien’s bag, which also disclosed that he had autism. By then I had already contacted Jerome to help me deal with the situation. When Sebastien took too long to return from his second lap at the park, I suspected that something was amiss, but I had too many bags to carry to leave our usual pavilion where Sebastien would have a picnic with his packed “food bag” after his skating to look for him. Although there were no apparent indications that Sebastien was unduly disturbed by what had happened, except for the reddish marks on his wrists, after Jerome escorted him back, Sebastien would bang his head with his fists almost 10 hours later that night.
Therefore, even though I was out of solid prospects and opportunities after our return from Santa Rosa, I never relinquished the idea of an overseas solution. I believed that holding onto this prospect helped to sustain me. In my mind, I was just taking a break, waiting for a second wind, to find my inspiration, to gather my strength to re-initiate the process.
* * * * *
Then one day, the name of an acquaintance came to mind. Ten years ago, Cecilia had embarked on a quest to find a place for her to live with her then sick husband, outside of Singapore. In the end, she had ended up building her own home in Ubud, Bali. So even though we had been barely in touch in the intervening years, I emailed Cecilia for help.
Calling me back within 24 hours, Cecilia was upfront about the bleakness of the prospect of finding someone who could look after Sebastien in Bali. Between the language barriers, the lack of knowledge about autism, and the Balinese’ commitment to their ceremonial traditions, finding reliable full-time help, let alone someone who could understand an autistic individual, would be a major challenge. Nonetheless, Cecilia promised that she would ask around. Even that promise held forth a speck of hope for me.
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