Week 9 of Serialization of Where Does My Autistic Son Belong? Chapter 9
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, Chapters 1–8:
CHAPTER 9
INSTITUTIONALISING SEBASTIEN
(December 7th — 20th, 2015)
Despite going to bed at almost 1:30 a.m., I struggled to stay asleep. My mind was full of all the things that had to be done. With Sebastien in the hospital, there was no way that I could keep on running A Mother’s Wish holiday programme. So I sent out a WhatsApp apology to the parents, paid professionals, and volunteers, explaining what had happened. If no one could take over in my role, the holiday programme would be cancelled and refunds issued as soon as possible. I did so with a heavy heart, knowing that I had inconvenienced parents who would have to re-scramble their schedules in order to ensure that their autistic children would have alternative activities for the day.
However, within minutes, parents were sending a flurry of messages to me, reassuring me that they were fine with the changes and showering Sebastien and me with their concern. I was profoundly moved by their understanding, kindness, and empathy. A volunteer even stepped up to assume my role; all I would need to do would be to pack a bag with the worksheets, prepare the nametags, and put the daily roster on the clipboard and pass it to the volunteer every day. Although I had often felt alone in having to be the mother who took the initiative to do things, it was the parents and volunteers who propped me up, when I was on the brink of collapse. Thus, the spirit of A Mother’s Wish community that I had sought to cultivate shone came through to sustain me in one of the darkest hours of my life.
Once I had taken care of the holiday programme, I felt momentarily lost and disoriented. Waking up on a morning without the structure of Sebastien’s routines that I followed, I struggled to think about what I was supposed to do. It was also likely that I was terrified at the prospect of returning to the hospital and confronting the reality of my situation with Sebastien. The panic from last night came surging to the surface. My breathing felt laboured and unnatural.
Thankfully, the voice of objectivity that I had honed over the years to regulate my manic depression and manage Sebastien’s meltdowns kicked in. In my mind, I created an itinerary that would involve me visiting Sebastien in the morning with a “care package”, taking the holiday programme bag to the volunteer, going home for a break, picking up the bag from the volunteer, before returning to see Sebastien at the hospital in the evening. Although I could have continued to coordinate the holiday programme with this schedule, it would have been too physically and emotionally taxing. With my mind on Sebastien, I definitely wasn’t in any shape to run this programme.
With the itinerary for my “new life” formulated in my head, I began to prepare the “care package” for Sebastien. As Sebastien ate particular foods for his meals, it was unlikely that he would eat the hospital food. I needed to pack his breakfasts, lunches, and dinners. It would at least give him a semblance of familiarity while he was stuck in that environment. Completely sleep-deprived, I clumsily assembled the containers with cereals, organic rice cakes, and chopped-up fruits. Although performing these actions made me feel “useful”, the heavy sounds of my laboured breathing reminded me of my state of anxiety. Despite all my planning, I was terrified of the unknown that I would confront when I returned to the hospital. How could the doctors help me with Sebastien? How would Sebastien be? How could I make sure that he had access to these items? What else could I bring for him? At the last minute, I threw in a set of markers and some pages for colouring.
* * * * *
Working my way to Ward C — a block of buildings away from Emergency, I could hear high-pitched wails emitting from one of these blocks. What a sensory nightmare for Sebastien! I wished that I could just take him out right away, but I knew I was not ready yet. I was a trembling mess, feeling in no shape to handle Sebastien or life in general, for that matter. I shut out the wails by telling myself to focus on today. For today, this was Sebastien’s new life and my new routine. Like the first day of school.
What I didn’t know was the extent to which I would be thrust into a whole new ecosystem with its iron-clad set of procedures, routines, and realities for its inhabitants and visitors. Because there is no one giving you any kind of introductions or orientation in this strange new world, the mental hospital is intensely bewildering for a first-time visitor. Yet you don’t give way to any panic; there is no room for that as your feeling of dislocation keeps you on edge and alert. With no “guide”, you have to figure out everything, one step at a time, with each step giving you the “clue” or the insight to take you to the next place.
So on that first bleak morning, I was introduced to Ward C by being buzzed through a set of grey doors that led into the inner sanctum of the ward area. That was the first procedure: you couldn’t just walk in and out of this space; you needed to be buzzed in and out. And I could not just go in to look for Sebastien where he stayed and slept. Instead, I had to sit down and wait at a table with benches in the visitor’s area where Sebastien would be brought out to me. This was the only place where we would get to spend time together.
When Sebastien emerged from the swinging doors, still in his pyjamas from home, he had a half-groggy look on his face, which indicated that he was drugged. My stomach lurched. I wanted to run away. You see, Sebastien was not restrained in any way; the bespectacled male nurse accompanying him was almost half his size. On that morning, it was patently obvious that Sebastien was in the hospital not just because he was aggressive, but also because I cared more for my safety than his well-being. I was no longer a carer who could look after Sebastien properly.
As discreetly as possible, I asked the nurse in Mandarin under my breath: “Are you sure you can handle him?”
He responded calmly to me: “He is okay. They gave him a strong dose of the sedative last night.”
“Just make sure that you can ask for help.”
“Okay. I can call for help if needed.”
Only after my sense of safety was assured, with the male nurse standing next to me and his walkie-talkie in hand, did I turn my full attention to Sebastien. Quieting my tremulous nerves, I set down the care package on the table to look for the croissants and the ciabatta and lay them in front of him.
“I brought you breakfast.” It was a peace offering of sorts.
As Sebastien sank wearily down on the bench, he looked like a tired giant who could still hurt me. I was not letting down my guard.
It was hard to see the spark of life in Sebastien extinguished by the effect of the sedative. He ate his breakfast in an absent-minded manner. After that, I handed him a set of markers and a drawing for colouring. While Sebastien coloured, I spoke to the male nurse to find out about the treatments for Sebastien and what his day was going to be like. I also wanted to know how the staff was handling Sebastien.
Apparently, that morning, Sebastien had refused to conform to the morning routine of taking a shower like everyone else and changing into the clothes of the ward. And the staff had not forced him. It was reassuring to me that they were willing to exercise their relative position of power with restraint and flexibility.
However, aside from these self-care routines and meals, there didn’t seem to be many other activities organised or provided for the patients. The male nurse vaguely said that a nurse might come in to introduce some exercises and activities. It was hard for me to imagine how Sebastien could pass the long hours in this place without any stimulation. So I made a mental note to bring in more activities for Sebastien to do.
Later that morning, I met with a team of six members — doctors and social workers, along with a nurse who set at a corner typing notes into a computer. I wanted to know whether there was a medication that could mitigate Sebastien’s eruptions. I didn’t want drugs that would turn Sebastien into a zombie-like version of his usual self. Was there such a medication? I wanted to have a definitive solution. However, the doctors did not answer me. They told me that they had put Sebastien on a drug called Quetiapine that was effective for “maladaptive behaviour”. At this juncture, Sebastien was on a very low dose to evaluate his tolerance for the drug, which could only be ascertained after two weeks. It would take a month before the dosage could be increased and its effectiveness determined.
I emerged from the meeting, feeling bleak and hopeless. The last thing I wanted to hear was that we needed to wait and see to evaluate how the medication would work out for him. A month? Such a timeframe felt way too slow in the fast-paced world of our autism universe with Sebastien, where the situation can change in a heartbeat.
Of course, it was unrealistic of me to expect more. At that time, I wanted to know what I should do about Sebastien in the coming days. What I had not realised at the time was that the focus of the doctors of this ward was to stabilise Sebastien in a crisis situation and take it one uncertain day at a time. From their perspective, Sebastien was just another patient for them to make a decision about for that day and I was another concerned family member to deal with before they moved on to the next one.
To me, the doctors’ composed and almost cheerful demeanour struck a discordant note with this hospital environment. Periodically, sirens would ring out to summon nurses to congregate at a ward where a patient was causing a disturbance. What you could hear with more frequency throughout the day were the eerie wails of a distressed patient from who-knows-where.
Unlike the nurses, the doctors occupied a space in the institutional hierarchy that placed them above the “fray”. Because they never had to “get their hands dirty” through actual interactions with the patients, it was easy for them to keep up this façade. In fact, with regards to every concern I raised about Sebastien’s stay at the hospital, they smiled patiently and told me to inform the nurses or ask the nurse to type it into the computer. Thus, the nurses were the people who were doing the hands-on care of Sebastien and getting to know him. It was disconcerting that the doctors who barely knew him possessed the power and authority to make key decisions that affected Sebastien’s day-to-day existence. I couldn’t even be sure that they had actually seen him. Such a decision-making hierarchy with decision-makers situated from a distance didn’t make sense to me. However, with no other options, Sebastien had to stay put.
That night, I returned with a sense of unease, feeling helpless about Sebastien’s situation. Unlike the morning when I had to orient myself, a nurse came up to me and greeted me with a big smile, “Are you Sebastien’s mum?” Senior Nurse Faz escorted me into the office to speak about Sebastien’s day. My meeting with her was an amazing turnaround from what had transpired in the morning. I was talking to someone who was interested in Sebastien as a person.
“His colouring is amazing. All the other patients were all telling him that he was a great artist!”
“Oh really? So he was okay with the people coming up to him?” I could hardly contain my disbelief.
Nurse Faz nodded her head: “Yeah, he even said ‘hi’ back to them.”
It felt bittersweet to have my spirits lifted by Sebastien’s willingness to interact with his fellow patients.
With this opening, I was able to seize the opportunity to tell her about Sebastien’s pooping and showering routines, which take place at night, instead of the morning. It was not an issue. Senior Nurse Faz smiled and reassured me that it was fine that Sebastien took his shower at night. In fact, Nurse Faz apologised openly about Sebastien’s situation: “We are not familiar with autistic patients in this ward. He is not supposed to be here, but there is no room anywhere else. Everyone is unique and we want to understand [Sebastien] to help him during his stay here. So we can try to make him as comfortable as possible.”
Her unexpected words brought tears to my eyes when she told me. It was almost the most accepting statement I had heard from anyone about Sebastien in the 10 years that I had lived in Singapore. To think that of all the places in Singapore, I would find this acceptance in a mental hospital on Sebastien’s first day of institutionalisation.
Subsequently, Senior Nurse Faz went into the ward to take Sebastien for a shower and brought him out to say “goodnight” to me. She gave me a smiley nod, handing me Sebastien’s pyjamas from home while reassuring me that everything had gone without a hitch.
My experience with Senior Nurse Faz was so positive that it even made me wonder whether the hospital would be the place where Sebastien could get better.
* * * * *
Though it was just the second day of Sebastien’s stay, I felt like a “pro” as I went about my preparation of Sebastien’s meals and gathering the activities that could entertain him for the day. This time around, I even made sure to bring the iPad so that Sebastien can listen to some music. Listening to music from YouTube videos played from the iPad while mopping the floor had been incorporated into our mopping routine for the past few years. Furthermore, Sebastien got to enjoy another 15 minutes of the various music videos I would select for him after the mopping was completed. I had always loved how Sebastien would immerse fully in the swelling chords of the music, his eyes brimming with emotion, his face aglow with excitement, and his body leaping rhythmically to the beat of the music.
The night before, the iPad had saved me from the dark void of the night in an empty flat with neither Jerome nor Sebastien. After two decades of shaping my life around Sebastien’s routines and rituals that had reduced my “me-time” into constantly-interrupted, stolen moments, I had unconsciously come to rely upon them as some kind of an anchor to a familiar reality. In Sebastien’s absence, I was struck with profound existential fear that made me question the purpose for my existence, instead of enjoying this much-needed respite. I clung onto the sounds of the music from “The Voice” YouTube videos into the wee hours of the night until I was no longer able to keep my eyes open.
However, the music videos from the iPad did not rouse Sebastien. Though he seemed to be listening, he was barely bopping. The staff had given him another heavy dose of sedative: he had moved sluggishly towards me like a Zombie, and ate the croissants and ciabatta that I brought him disinterestedly. That morning, I didn’t even bother to ask how much they had given him; everything just felt hopeless.
So after trying out a few more songs that I knew Sebastien liked to no avail, I let him look up iPad videos of his choice. He took over the device and started to put on roller coaster videos. However, it was not long before I detected a restlessness simmering beneath his sluggishness. Suddenly, he typed on the search box at the iPad frantically to compose words, while articulating a word that sounded like “Equarius”. I had no idea what he was searching for — it could be a roller coaster video that he had once watched, a shopping mall, or a cartoon character. There was a part of me that wanted to alert the authorities — Sebastien could be having a meltdown.
Luckily, several male nurses escorting patients came out from the ward to go towards the cafeteria for lunch. Seeing the patients moving, Sebastien also got up to go to the cafeteria. It was like being saved by a bell. This was a good opportunity for me to pack up the iPad and head out to meet the AMW holiday programme group.
But just as I was getting ready to request for my departure, the wailing sounds of the siren broke out. Somehow, I knew it was because of Sebastien. A split second later, I heard the unmistakable sounds of Sebastien’s angry screams and shouts. From the tiny glass window that separated the visiting area from the nursing counter and the cafeteria, I could barely see him. Sebastien seemed to have been swallowed up by the nursing staff swarming around him. A female nurse ran into the nursing station. She flipped frantically through a thick manual, as though she was unsure about which protocols should be followed. Then she ran out of the visiting room into the ward and came out with a gurney for Sebastien.
It felt so unfamiliar to be so far away from Sebastien when he was having a meltdown. I was reduced to the role of a spectator, not much different from all the visitors trapped in the visiting area who were unable to leave until the situation had been stabilised. From the vantage point of this window, I could catch flitting glimpses of Sebastien’s head as they hoisted him onto the gurney and secured his flailing limbs with the cloth strips onto the iron railings on the bed.
It was hard to explain. But somehow, surrounded by the family members of the patients, I remained completely calm. All around me, not a single person was reproachful: everyone was calm, quiet, and understanding. Completely empathetic, they were all schooled to recognise this situation as part and parcel of the reality of the institution. This was yet another amazing thing about my experience at the mental hospital — the tacit unity and bonding between the family members full of understanding, empathy, and acceptance. These strangers helped me to keep it together.
A male nurse emerged from the cafeteria. Sweat was glistening on his forehead; he was still panting from the challenging encounter with Sebastien. Senior Nurse Jeremy looked almost apologetic as he described what had happened. Sebastien had tried to remove a sticker on top of the “Exit” sign. When the staff tried to stop him, he began to bang his head with his fists. Within the institutional setting, a patient banging his head is equivalent to self-injury, which calls for restraint. However, when a male nurse tried to pull Sebastien’s arm away from his head, Sebastien attempted to head-butt him in the stomach; but he missed. That was when all the staff members swarmed around Sebastien to hold him down.
Although I was reeling from Senior Nurse Jeremy’s words, I was not angry with the staff. They did what they were trained to do in an emergency situation. However, they were not trained to deal with an autistic individual. The staff member who interfered with Sebastien’s head-banging almost endangered his own well-being by trying to stop Sebastien in the middle of his outburst.
But what was done was done. No one got seriously hurt in the process of getting the situation under control. Ultimately, I deeply appreciated the fact that I was not a part of the melee, however poorly handled it was.
“So what happens next?” I maintained my cool as I asked.
“We will keep him restrained until he has calmed down. If he doesn’t, then we will have to give chemical restraint. But it is the last resort. We generally try not to do it.”
Although I didn’t like either of the options he had presented, I trusted that Senior Nurse Jeremy would do the right thing for Sebastien. I could tell that he was distressed about our situation. Perhaps, he knew that they did not handle the situation as well as they could have for an autistic person.
“I understand. I have to leave now, but I will come back later. Please make sure he eats his lunch.”
“Yes, I will.”
Once I was alone in the taxi, my composed façade disintegrated, as tears burst forth from me. My sadness at that moment felt like a bottomless pit that threatened to engulf me. How can Sebastien continue to stay at the hospital, where the space he is supposed to eat at contains the constant temptation that could trigger another outburst? This bleak reality was more than I could handle. I started typing WhatsApp messages to Jerome, sending these words to him even though I didn’t know whether he would be reading them. He had taken a flight one day earlier and would be returning that very night.
But Jerome was there: he was in transit in Dubai. He replied quickly: “Many years ago, I saw a man crying at an airport. And I thought to myself, ‘Why would a man cry at the airport? Today, I am that man…” Tears sprang to my eyes. With this description, Jerome revealed the depth of his incredible love that had remained steadfast through all these hard times. For a moment, I was terrified at the prospect that I could lose Jerome at the point of apprehending the beauty of his soul. I really didn’t know if we could make it through this ordeal and emerge from the decision I had made because I could no longer care for Sebastien.
I was troubled for the rest of the day, feeling confused about the course of action we should take. Should we just leave Sebastien in the hospital to undergo medical treatment and let others deal with his difficult behaviour? But I wasn’t sure that I wanted to go down that road. I didn’t have much faith in a drug that could temper Sebastien’s explosive outbursts without affecting him in other ways. Furthermore, I couldn’t imagine what shape Sebastien would be in after a long-term stint in the mental hospital. I was also plagued by guilt: was I trading my safety for his freedom? Was hospitalisation the best choice between the nightmares for us?
There I was, standing at a critical crossroad. I could continue to move forward from what I had initiated two days ago and followed the doctors’ prescribe route. Or else, I could turn away from them and rely once again on my own devices. Contemplating the prospect of letting go of Sebastien was an unfamiliar position for me to be in. Throughout Sebastien’s life, I had taken great pride in being a mother who would never give up. Even after being hurt countless times by Sebastien, I never once called the police. Regardless of my initial reluctance, I would always get back on my feet again the next day and return to my flat to go through another day with Sebastien, knowing full well that I could get hurt again. In the face of all these odds, I pushed myself, against my own nature, to be an eternal optimist about Sebastien. I kept on believing in a sunshiny tomorrow that would be nothing like the grey day before. My dream as a mother was to save Sebastien from the ravages of his condition. But I no longer believed that I could.
That evening, I returned to the hospital, full of trepidation. What state would Sebastien be in? How would dinner go in this same space?
The cafeteria was empty save for Sebastien who was still eating his food. When Senior Nurse Jeremy saw me, he stepped out.
“So how did the day go?” I asked with a sense of dread, bracing myself for the worst.
“It was okay. We didn’t have to use the chemical restraint. He was restrained for 90 minutes and we let him go.”
“Did he eat?”
“We fed him while he was restrained.”
“I see.” I pushed my back my desire to flinch at the thought of Sebastien being spoon-fed.
Senior Nurse Jeremy looked genuinely sorry as he told me: “But he did not leave the bed the whole afternoon. It was a very bad day. The sirens were ringing all afternoon. I think maybe he associated the siren with being restrained. I tried to calm him down and tell him it was okay. But he never left the bed, until just now.”
Five hours sitting in a bed, covering his ears. Okay, it wasn’t completely horrible. No chemical restraint. But this was just for today. Knowing Sebastien as well as I did, the crisis would break out again tomorrow, or even tonight. Or perhaps, he might have learnt his lesson from this sufficiently unpleasant incident.
“You know, so long as the sticker is there, this will always be a problem. Can he eat somewhere else?”
“No, all the patients eat their lunch and dinner there. I will go in now and talk to him. I think he is finished.”
“Sure, thank you.” There was a tiny hope that Sebastien would listen.
From a distance, I watched Nurse Jeremy and Sebastien. They were seated on benches on opposite sides of the table. Though I could not hear their conversation, I could tell by the body language that Nurse Jeremy was endeavouring to connect with Sebastien and Sebastien was even listening to him. And after a few minutes, they high-fived each other and got up from the bench. I didn’t know what Nurse Jeremy had said to Sebastien. But for the second time in two days, I was impressed by yet another nurse who had been willing to treat Sebastien with respect and care. I felt the kindling of a small hope that the mental hospital, with nurses like Nurse Jeremy, could be the right place for Sebastien.
And then…
“Sticker off.” Sebastien pointed at the “Exit” sign.
I could not hear what Nurse Jeremy said, but he shook his head and tried to stand in Sebastien’s way. Soon two other male nurses appeared. While Sebastien continued to gesture towards the sticker and spoke in a reasonable voice, “Sticker off. Sticker off”, they cornered him against the wall. In the meantime, one of them rushed past me to the ward to get a bed and Sebastien was once again restrained. As they wheeled him past me into the ward, Senior Nurse Jeremy was pressing down on the two sides of Sebastien’s face. He must have wisely noticed that this was how Sebastien regulated his exposure to the environment. And with Sebastien’s hands tied down, Senior Nurse Jeremy did his best to compensate for the situation. Distressing as the situation was, the evening restraint was relatively calm and uneventful.
Nonetheless, it was abundantly clear to me that the sticker in the cafeteria would remain a perpetual trigger for the coming days. I waited for Senior Nurse Jeremy to come out for us to discuss the next steps. But he did not come out for the longest time. Instead, nurses were rushing past me to go in and out of the ward. I felt frantic, not knowing what had happened with Sebastien. Due to their frenetic pace, I couldn’t stop them. It was clear that a crisis had broken out and I didn’t want to be in the way.
And finally, Senior Nurse Jeremy emerged, looking completely harried.
“Is Sebastien okay?”
“Oh, I’m so sorry. He’s fine.”
“So all these nurses running around were not for him?”
“No, we had two new patients coming in. And the doctor on duty told me to give Sebastien a strong sedative. He is resting now. I’m sorry.”
What?! This was infuriating. Even though Sebastien was, by no means, more violent this evening than he was in the afternoon, the doctor on duty prescribed a stronger intervention for Sebastien than what he had experienced in the afternoon. Clearly, the doctor had made this decision without even knowing what had transpired that afternoon to recognise how excessive his intervention was. Instead, he had simply chosen this option for his own convenience, even if it came at the expense of the well-being of individual patients. There was nothing that Senior Nurse Jeremy could do about it based on the hospital hierarchy. Furthermore, in the face of my questioning about how we can deal with this sticker issue apart from sedating Sebastien, all Senior Nurse Jeremy could say to me was to speak to the doctors tomorrow.
Given that the only individuals who had impressed me at the hospital were the nurses, Senior Nurse Jeremy’s advice to me filled me with despair. At that moment, even he looked profoundly discouraged about his inability to help Sebastien and dissuade him from his doomed desire to remove the sticker. Yes, welcome to my world, my despair. The essential difference was that he didn’t have to stay in this place of helplessness. He got to move onto another patient, to his personal life.
As Senior Nurse Jeremy walked away from me, I felt as though the surrounding darkness was closing in on me. Everywhere I looked, I could not see any light that could point the way towards a happy resolution.
At that moment of utter despair, Serene, a mother who had a mild-manner autistic adult son, called. Over the past two years, She had gotten to know Sebastien through her hosting of A Mother’s Wish holiday programme activities at her home and our Frisbee-cum-picnic sessions at the Botanical Gardens. I can no longer remember much of this conversation, except that we were sobbing uncontrollably. But when she insisted that my love for Sebastien would get us through all this, I remember unleashing the grief that I had accumulated for the past five years: “No, love is not good enough. I have loved this boy, but my love cannot change his sticker obsession, his eyebrow-pulling, his head-banging, and his aggression.” She had no reply.
By the time we hung up, I felt utterly drained. Yet this cathartic release was a wake-up call to stir me from my disempowered stupor. For the first time since Jerome left, my mind felt “sea-calm”. Though it had once been tossed and turned by tempestuous waves, the vast water was quiet now that the storm had passed.
And then I suddenly knew the answer to the question I had been asking myself the whole day: “What should I do?” It was so simple. I needed to get Sebastien out of there. There was no way that I would subject him to another round of restraints (chemical or not). After all, he would always have to go for his lunches and dinners in the same kind of cafeteria with stickers above the “Exit” signs, regardless of which ward he went to. It was hard not to lament the injustice of the universe in giving Sebastien a sticker obsession in a country that was plastered with “official” stickers. Even a place that was supposed to be helping him would also have stickers that would set Sebastien off and make everyone’s life including his own a living hell.
To top it off, I was bringing Sebastien food and activities from home every day. Thus, the practical function of the hospital was essentially reduced to confining him and keeping him away from me.
So I began to envisage our small flat as an alternative institution. On the positive side, Sebastien would not be living in an environment where his senses were assaulted continuously by the eruption of emergency alarms and the steady wails, screams, and cries of anger coming from above, below, and outside. Furthermore, I could improve the safety of our home environment by removing all sharp objects and glass items from the common area and locking them in my room.
Of course, my “home-based” institution would not have staff members to protect me from Sebastien. Thus, I would be back to Square 1. But I didn’t want to think that far ahead, or self-doubt would have crept in and stopped me in my tracks. After feeling utterly disempowered about Sebastien’s situation over the last three days, I derived a strange “high” from the idea of “freeing” Sebastien from his institutionalisation.
Preparing for Sebastien’s release was not just about picking him up. Like the mastermind of a “hospital breakout”, I formulated an elaborate plan. For a start, my plan would not have been possible if Jerome was not returning that night. It was the perfect convergence of circumstances — the timing of his arrival and the pressing need to get Sebastien out of the hospital. I also had to make sure that I covered the overall situation from multiple angles. This included prepping the house by locking away all potentially dangerous items and enlisting additional helpers such as Casey and Coach Randy to help with the transport and muscle, respectively. After being sedated for two and a half days in an institution, Sebastien’s reaction towards his liberation was unpredictable. Anything could happen with a post-institutionalised Sebastien. I wanted us to be ready for the worst-case scenario.
For a logistical novice, formulating such an elaborate plan in the wake of the emotional trauma I had been experiencing felt like a massive accomplishment. I wanted a pat on the back, a high-five. But when Jerome walked through the door of the apartment, all my euphoria and pride about my plan disappeared. As we sat facing each other on the chaise longue where Sebastien and both of us had clocked so much time cuddling together on Sunday mornings, I came down from my “high”. For I had never seen Jerome so slumped in sadness, and even rarer yet, with tears welling up in his eyes and flowing down his cheeks.
While I had wanted to rehash the plan as though everything was going to be alright when Sebastien came out, Jerome told me how he had cried throughout the homeward flight. He was replaying all the images of the wonderful holidays that we had spent together. For Jerome, aeroplane rides had become forever associated with our holidays, as Sebastien loved the whole experience of flying and visiting new places — a love that had been cultivated by Jerome’s own passion for travel.
With what I said about Ann Bauer very fresh in his mind, Jerome was already grappling with the very real possibility that one day, we might never spend another holiday with Sebastien. Until then, Jerome had not realised that such a prospect would cause him so much heartache. And thus, on this darkest of days, which had reduced this stoic man to tears, he told me: “Maybe I love him more than I thought.” You see, things had been so difficult and challenging with Sebastien that Jerome came to doubt that his love for Sebastien could be separate from his love for me. But from that day onwards, no matter how strained things became, he knew, without a shadow of a doubt, that he loved Sebastien, with or without me. Through this crisis, it would seem that Jerome too had crossed some kind of a threshold in his relationship with Sebastien. But it was one that was decidedly different from mine.
However, I didn’t want to go where Jerome was. That night, I was in a different emotional place. After crying for days, I wanted to be a pragmatic “action man”, not drowning in sentimentality. Perhaps, to me, connecting with Jerome’s newfound sense of love for Sebastien and his sadness would have made me feel vulnerable and once again reduce me to a puddle of tears. I wanted to hold onto my temporary position of strength, of knowing exactly what to do for the next 12 hours.
The truth was that while Jerome had moved forward in knowing how to love Sebastien through his best and worst moments, I had become filled with self-doubt about how I honestly felt about my son. But it was not something that I was pondering deeply about. Living a life, in which I was always rushing from one crisis to another and getting burnt by the fires that I was endeavouring to put out, gave me the perfect excuse to neglect how I felt about Sebastien deep down inside.
* * * * *
Even though Senior Nurse Jeremy had fended off my queries last night by telling me to ask the doctors, they too could not offer any answers about how they could deal with the sticker over the “Exit” sign in the cafeteria or provide a promising treatment plan. Instead, Sebastien would just continue with the Quetiapine they had given him to control his maladaptive behaviour. They also prescribed a sedative for him, to be used as needed.
Even though I had been prepared for a confrontation in response to my request to discharge Sebastien, no such situation occurred. In fact, I even got the impression that the doctors were happy to discharge Sebastien. Subsequently, the doctors were mostly focused on executing their protocol of releasing a patient — transferring us to a caseworker and an outpatient doctor. We would no longer be their responsibility. All I could see, as I sat facing one of the smiling polite doctors, was a line of professionals stretching into infinity, with none taking any real interest in ensuring that Sebastien would improve in his behaviour.
Discharging Sebastien from the hospital and getting him home was supposed to be the happy ending to a difficult situation. The parents from the holiday programme deluged me with their warm wishes and congratulations through the WhatsApp group. For a few hours, I luxuriated in the warm embrace of a community that could empathise readily with my heartache and joy.
But by the end of the day, when all these outside voices had stopped, I became ever more conscious of the aloneness of our fledgeling family unit. The problem that had led to my call to the police remained unsolved. Our crisis had only been temporarily resolved by Jerome returning to “save” me, but he could not stay by my side all the time. In fact, that afternoon, when Jerome left for work, I felt nervous about being left alone with Sebastien.
Even as the days of the crisis receded into the distance, I was still conjuring them up, shifting between justifying why I had called the police and fearing that Sebastien would erupt again. It bothered me that Jerome was not there to validate what I saw so that he could understand why I got him institutionalised. With these mental clouds hovering over me, I could not shake off a bad feeling about Sebastien even when we were cuddling or hugging. Whenever Sebastien squeezed my arms a little too tightly and giggled, or our hugs lasted for just a second longer because Sebastien did not let go, I would experience a quickening of fear that I would try to suppress immediately. I was conscious of my sigh of relief when our embrace was over, with my mind bursting with questions: What is he seeking to convey with his hard squeezes and hugs? Is he being genuinely affectionate or is he actually threatening me again? I had no answers to any of these questions.
At the end of the day, Ann Bauer’s words had left an indelible mark on my being because their veracity had been verified time and time again by the layers of injuries and scars etched upon my skin, revisited in the traumatic memories of my mind, and planted deep into my broken heart. Regardless of how supportive the parents of the holiday programme were and their perception that Sebastien’s entry into the hospital was just an unpleasant interlude for our family, I could no longer pretend that everything was going to be all right.
Instead, Sebastien’s entry into the hospital signified a continuation of a new narrative that started when I called the police. As I looked back upon my momentous decision to call the police, I realise that I wasn’t expecting the police to “save” Sebastien or me from himself. I was raising my hands up in the air to concede defeat to the reality: I was no longer able to handle the role that I had occupied for the past 20 years. Taking care of Sebastien had always been my responsibility, but now I could no longer do it. By calling the police, I had initiated my process of relinquishing my role as Sebastien’s life guide.
Of course, while the change in my mindset was a significant first step, moving away from my role as Sebastien’s carer responsibly was easier said than done. All I had was a gut feeling that I needed to do something to change the status quo. How the entire operation could pan out was completely amorphous to me.
At the same time, I wasn’t operating entirely in a vacuum either. Several months ago, someone who was a distant acquaintance made me an unusual offer…