Week 15 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 14.
CHAPTER 15
BALI RECON: BEFORE AND AFTER
(June — July 24th, 2016)
Once we purchased the ticket for our recon trip to Bali, the grieving process kicked into overdrive. Regardless of my rationale for pursuing the overseas solution, there was no taking away the sense of grief that hit me at a visceral level. The emotional pain was not an abstraction, but something that I could feel in the pit of my stomach, on the surface of my skin.
This grief was not something that I had any control over. A wave of grief could sweep over me in the middle of us exercising: tears would gush out from me until I had to brush them away from clouding my vision. I would not care that Sebastien, exercising just mere metres away from me, had seen me. Scrutinising me with quiet intensity, Sebastien did not betray any apparent signs of fear and anxiety. It almost felt liberating just to let loose of this powerful storm raging within me. I was just too upset to care about its impact on Sebastien.
Instead of experiencing this grief like a familiar guest after having undergone it twice, I found that the grieving cycle had become more and more difficult with each subsequent pursuit of the overseas solution. Thus, I learnt the hard way that grieving was not something that you got used to, or got better at with greater exposure. Instead, the prospect of letting go of Sebastien became more and more real: after each failed attempt, I kept thinking, this must be it, about the next try.
With this third round of the grieving process, I became ever more conscious of Sebastien’s pervasive presence in every sphere of my life for the past 20 years. There was nothing I could see, hear, or touch, as I went through the motions of life, which did not remind me of him. I even had a dream in which I missed Sebastien because there was no one in my life who was constantly peeling off labels and stickers. In the light of day, it seemed utterly ridiculous that I would miss this intrusive habit. Yet, when I woke up, the sense of loss about my sticker-removing son being gone from my life was like a gaping hole in my heart.
And what about Sebastien? What was going through him? How would he respond to a life away from me? But even as I asked these questions, I could barely skim the surface of his thoughts without feeling anguished. I was sure that he would miss our Sunday ritual of a breakfast “feast” of croissants and pastries, followed by 20 minutes of cuddling with Jerome and me. He would lay his head on Jerome’s lap and get a head massage, while I massaged his feet at the other end of the couch. We would set a timer for 20 minutes, because otherwise, Sebastien would have preferred the cuddling to go on for as long as possible. Worse still, I could barely contemplate Sebastien’s grappling with his fears and anxieties of an unknown, new existence, which included my absence. Suddenly, I realised that I was almost glad that I could not tap into the inner life of Sebastien. Like a coward, I had neither the strength nor the courage to cope with that knowledge.
At this critical hour when I had made up my mind to push through with the overseas solution, I became most acutely conscious of my love for Sebastien. Despite all the hateful thoughts, words, and actions that we had inflicted on one another, the love between us had proven to be unbreakable. Sebastien had been the love of my life, which had always been by my side. The pain that I was experiencing as I confronted the impending end of this incredible journey of love testified to the central role he had held in every nerve and fibre of my being. Although there was much that I could never be sure about Sebastien, I was certain that we would miss each other very much for the rest of our lives.
Nonetheless, motivated by the unimaginable impact of our impending separation on Sebastien, I resolved to put a brake on my indulgence in my grief. To cope with an event that was beyond my control in as empowered a manner as possible, I decided to make use of the countdown period until the recon trip to Bali to get my emotional house in order.
My endeavour to achieve a state of serenity was not just about managing my emotions, but also about conveying a message to Sebastien that everything would turn out all right. I had to do it “right” so that Sebastien would have no inkling of the heartbreak that was ripping me apart inside. To me, it was vital that I projected a clear and unequivocal stance that our separation — the path towards his independence — was an ideal solution for him. Any wavering on my part would only add to his sadness, fear, and anxiety about his future. Thus, there could be no room for sorrow, sentimentality, or parental guilt on my part. Even though I couldn’t be sure that I could attain such an outcome, it was the standard I set for myself.
With this resolution, I began to meditate consistently every night. During the meditation, I sought to cultivate an inner voice that helped me to manage the conflicting streams of thoughts coursing through my mind. There were fears of Sebastien’s meltdowns in our daily life and my grief for this unhappy ending of our homeschooling journey. I was also torn apart by my conflicting desires of both wanting and not wanting the Bali solution to work out, while worrying about financing this future life in Bali. Acknowledging each of these streams of thought made me realise the heaviness of the burden that I was carrying inside. I needed to let it go.
The clearing away of these negative thoughts made way, without any conscious effort on my part, for the emergence of positive feelings towards Sebastien. In silence, I thanked him for helping me to become the person that I was. I also wished him all the best for his new life, while I looked towards forging my own life. With these positive messages, a sense of gratitude surfaced during the meditation, which constituted yet another shift in my thinking about leaving Sebastien towards a more balanced and mature perspective, untainted by sadness, fear, frustration, and blame. Instead, it illuminated our impending separation with glimmers of hope and promise for a better, albeit unknown, future that I could not yet fathom. And I would typically end the meditation with a quiet assertion of the hope that we were doing the right thing by pursuing the Bali solution. Because of its “rightness”, the “forces of the universe” would somehow ensure that all the stars would be aligned to make this happen. This was how I dealt with all the elements that remained unknown.
* * * * *
Despite all my emotional preparation, my composure began to fray when the time came to pack for the five-day prospecting trip. What if Sebastien decided that he wanted to stay at the old folks’ home right away? There was always a remote possibility that Sebastien would like the place so much that he would decide during the visit that he was not returning to Singapore — his way of saying that he wanted to stay. One never knew with Sebastien.
By factoring such a possibility, the packing task turned into a logistical nightmare, as I vacillated between the two possible scenarios that could transpire for this trip. Should I pack for a five-day holiday or include irreplaceable items that he would need in his daily routines for the one week he would be staying there, while I rushed back to Singapore to pack up the rest of his possessions? Although the latter scenario was highly unlikely, I couldn’t dismiss it from my mind. Even if it had 0.1 per cent chance of happening, I would have to plan for it.
In the end, I went for the harder option of packing items that Sebastien would typically need to live in Singapore for one week in the two suitcases that we had planned to check in for a five-day trip, along with our own clothes. As Jerome helped me to close up the suitcase loaded with Sebastien’s canvas panels, boxes of paint, pencil box, and markers, I felt crushed by the heaviness and the immediacy of the unknown. I could hardly breathe.
Squeezing Sebastien’s “life” in a suitcase concretised the reality of moving Sebastien and my sense of conflict about the Bali option. Even in the wake of Sebastien’s continuous aggression against me, there was a tiny part of me that wished that we would reject the Bali option. Essentially, we would show up at the old folk’s home and dismiss it outright as an option for Sebastien. Then we could return to the edifice of the life that we had become familiar with. Such a thought would only offer seconds of relief until the image of Sebastien’s aggression flashed in my mind to disrupt the fantasy.
But there was no doubt that I was having “cold feet” about the whole thing. On the eve of our departure to Bali, I did not know whether I wanted the Bali solution to work out or not. My indecisive stance made me feel lost. I had no idea what would make me say “Yes” or “No” to the Bali option. This was not something that I shared with Jerome. Given how hard I had pushed for our pursuit of an overseas solution, I did not want to add my confusion to the emotional trauma that we were already experiencing.
* * * * *
It’s funny to think that, if not for Sebastien, we would never have visited Bali. The fact that it was such a popular tourist spot had always made it a huge turnoff for us. All these years, we had deliberately avoided travelling there. But there we were, setting out for a place that we had never wanted to visit by choice on July 16th, 2016. In my mind, I thought that this could be our final go at an overseas solution: it was Bali or nothing. What made this trip so hard was that neither outcome was satisfactory. There was no outcome I was shooting for. It just felt like the beginning of some kind of an end. Dead mother walking.
As we embarked on our prospecting trip to Bali, I wanted to project a façade of calmness. However, it proved to be a thin and flimsy veneer that could barely contain the emotional mess inside me. During the car ride from the airport to the hotel, Jerome’s laying of his hands on my shoulders and his casual query of “How are you doing” caused me to burst into tears. The “objective” persona in me, which I had cultivated for over a decade as one of the tools to manage my manic depression without medication, knew that I was in a bad place. I was skirting on the edge of a nervous breakdown. My repertoire of cognitive strategies, which was meant to illuminate the gap between my negative state of mind with a typically “more pleasant” reality, felt woefully inadequate in countering what was genuinely an unbearable life situation for me. I could feel the physiological effects permeating through my body: I had very little energy to fight against the sheer weight of the exhaustion, sadness, and anxiety consuming me. Although we were staying at a charming and rustic homestay hotel that appeared to be nestled in the heart of a forest, though the main street was just footsteps away, I struggled to enjoy the basic beauty of my environment. My first night of sleeplessness would define the rest of our stay.
To ease the stress and pressures of this trip, we had deliberately scheduled our visit to the old folks home on the following Monday to give ourselves a weekend of relaxation and do a little sightseeing. But sightseeing during the peak tourist season of Bali, which meant navigating past tourists on the narrow pavements and vehicular traffic that choked up the narrow sidewalks and streets of Ubud with Sebastien in tow, was far more difficult than one could imagine. As Sebastien would suddenly bend over to pick up garbage wherever we went, he risked causing the collision of a whole slew of tourists crashing into each other, or getting hit by passing cars and motorcycles squeezing through any available space on the street to get through the traffic. It was stressful to have to keep a constant close eye on him.
Our visits to temples and stunning rice paddies, which also involved dealing with hordes of tourists and undulating paths, were no less unpleasant. I was always scanning for potential trouble spots that could trigger Sebastien’s “inappropriate” behaviour. There were labels on water bottles on sale or in the hands of tourists, and stickers on cars and motorcycles, which Sebastien might suddenly decide to remove. As he wove past stunning vistas of rice paddies that he was barely noticing, Sebastien was more preoccupied with identifying pieces of plastic that were stuck stubbornly to the ground and trying to remove them. He was also pulling on the car door handles of the vehicles parked on the side of the road, which would startle some of the tourists sitting inside and stir up the drivers. While all of the behaviours mentioned above were innocuous in and of themselves, they were taking place in crowded areas with multiple targets and endless opportunities for his actions to be perceived as disruptive or alarming by so many people.
At some point, I had had it. I foisted the hands-on care of Sebastien onto Jerome and Kadek, our driver for the trip. Just so that I wouldn’t get stressed out by my reflexive anticipation of Sebastien’s responses to potential triggers, I would walk so far ahead of them to get to a private spot where they would be entirely out of sight. And during these brief minutes of privacy, tears would come pouring out of me. I was simultaneously overwhelmed by my guilt of abnegating the care of Sebastien to others and my frustration at how hard it was to take Sebastien out these days without feeling like I had to supervise his every move. Even though I knew that my dark mood was caused by my impending visit to the old folks home and its implications, this knowledge could not alleviate my sadness.
What further exacerbated my angst during these two days was my growing irritation with Kadek. Over the past few weeks, I had sought to conceptualise a programme of Sebastien’s life beyond the old folks’ home. Since Sebastien would not be participating in many of the activities with his fellow elderly residents, I had considered Kadek to be a critical person in Sebastien’s new life, as he would be needed to transport Sebastien out on hiking or beach expeditions. However, instead of helping Jerome to look after Sebastien, Kadek was often walking ahead, next to me, with barely concealed impatience and frustration at the slowness of our overall pace, due to Sebastien’s tendency to halt and pick up garbage. As a result, it was Jerome who ended up assuming the full burden of accompanying Sebastien and carrying a plastic bag for him to deposit the garbage along the way.
Just as frustratingly, we had wanted to check out the places of nature that Bali was well-known for so that we could determine whether it was a good option for Sebastien. Specifically, we were seeking quiet spots that were not overrun with tourists. Yet, despite our countless requests, Kadek only took us to conventional tourist locations. Beautiful as the rice paddies and waterfalls were, it was unpleasant to have to negotiate past lines of tourists on narrow paths and worry about Sebastien getting in their way as he picked up pieces of garbage that were strewn along the trails.
By the end of our weekend, the only piece of nature we experienced, which was both stunning and relatively isolated, was a beautiful black beach whose crashing waves had enthralled Sebastien. Other than that, all that was left of the Bali option was the old folks’ home.
The Bali option felt like a dud.
* * * * *
Monday, July 18th, the day of our visit to the old folks’ home, was a rainy one. In fact, it had been raining relentlessly since the night before. To me, the heavens were weeping for this visit that was emotionally-charged with all its poignant ramifications.
The visit began in a state of confusion. When we first arrived in amid the rain, there was no one to be found. I had to make a quick decision; so I told Sebastien to sit down at a stone table under a pavilion, and took out a Word Search puzzle book. At that point, I was doubting myself. It dawned on me that this time around, we were about to discuss the care of Sebastien with people whom I had had no opportunity to even forge a relationship with. Everything just seemed crazy.
To top it off, just as Sebastien settled down, two officials — Ida, the nurse director and Dr. Citra — showed up to usher us to another pavilion, further down the asphalt road where Dr. Baskoro, the owner of the old folks’ home, was waiting for us. This meant moving Sebastien abruptly just after I had already asked him to sit down at the pavilion.
And maybe it was because of this indecision or this last-minute change, Sebastien expressed his unhappiness the moment he arrived at the pavilion. He banged his head with his clenched fists several times. It wasn’t an out-of-control outburst — just a steady banging of about five times, which stopped just as abruptly as it started. When Sebastien stopped, he approached me looking all distressed. But I moved backwards instinctively, already poised to take off in anticipation of an attack in front of all these strangers. Jerome stepped in swiftly, ably taking charge of the situation. Wrapping his arm around Sebastien’s shoulders, Jerome spoke to Sebastien gently and guided him slowly to sit down at a table to do his Word Search activity.
I was both terrified and mortified. Sebastien’s head-banging at his potential new home shattered any fantasy that I might have of Sebastien falling in love with the place and set a negative tone for the visit. This was not how I would have liked these people to see Sebastien during the initial moments of this encounter. They had just stood there, watching like indifferent bystanders. Without Jerome to assist me, how could I remain in Bali on my own to train a carer to take care of Sebastien?
This was not the only obstacle to take into consideration. Dr. Citra and Nurse Ida were very honest about what the home could and could not offer. The home’s monthly cost of SGD2,500 would cover Sebastien’s housing, basic meals, access to trained medical staff, and on-site security services. Even though this price also included amenities and weekly outings, they were customised for elderly patients with dementia. Even though Sebastien would not be using them, we would not be getting a discount.
Furthermore, this old folks’ home was situated in a far-flung village, far away from the beach that Sebastien truly enjoyed and the modern part of Bali, which had movie theatres and bakeries that sold items like the croissants he ate for breakfast. However, Dr. Baskoro informed me that he could bring in supplies from the city centre in Denpasar every week, as he ran a clinic there.
As we discussed all these logistical issues, I was compelled to confront the immense differences between the life that Sebastien had led in Singapore and the one he would lead in Bali. If I were to try to replicate it, I would have to hire a car to transport Sebastien for long rides through traffic-choked lanes into towns. Just hiring a private car to him to a beach on one day and a movie on another every week could rack up a significant transport tab, in addition to the substantial accommodation costs that we already had to pay.
To top it off, the house that Sebastien would be staying at turned out to be a lot older, smaller, and shabbier than it had appeared in the photos. Although it was partially furnished, this almost full house lacked the basic necessities Sebastien needed like a table and chair where he could do his homework and paint. In fact, I would need to remove some of the existing furniture like a dresser table and TV to make room for the furniture that Sebastien would actually use.
Furthermore, there was no kitchen in the house. As Sebastien had been trained to prepare his own food, I didn’t want him to lose a vital life skill when he would just be served at all times like a guest. Although there was a communal kitchen that the staff used to prepare the meal for the residents, I cringed at the thought of Sebastien rampaging through the place, possibly removing all the labels and stickers from the seasoning and sauce bottles, or breaking things whenever he got angry. We would have to carve out some space in that tiny house to make our own micro kitchen. The costs of setting up Sebastien’s life at the old folks’ home were adding up.
But the costs didn’t end there. As none of the caregiving staff was familiar with autism, I would also need to hire, train, and pay a person to take care of Sebastien. At this point, I was struggling to keep track of the mental calculations of all the different costs.
Even so, I still managed to see some potential in this arrangement. I was struck in particular by the warmth, poise, and friendliness of Nurse Ida, Dr. Citra, and Dr. Baskoro, which they maintained even after they had witnessed Sebastien’s outburst. Accompanying us in the drizzle to visit the farm owned by Dr. Baskoro — a potential outdoor activity for Sebastien, Nurse Ida and Dr. Citra were marvelling at Sebastien’s acute visual sense and tenacity at picking up any piece of garbage, instead of being put off. It was a genuinely lovely reprieve to be spending time in the company of warm-hearted people without feeling self-conscious about Sebastien or distressed by their judgmental gazes.
Furthermore, when I surveyed the home’s beautifully kept grounds, I could see Sebastien expanding the repertoire of his life skills by learning how to tend the grounds. Under the guidance of a gardener, I was confident that there was much that Sebastien could learn to do — water the plants, rake the leaves, pick up garbage, etc. The farm next to the old folks home — a sizeable piece of uncultivated land that Sebastien could use to do some planting — also offered another promising area of growth and development for Sebastien. These were all the extras that I couldn’t offer him in Singapore, which I believed were suited for an outdoorsy person like him.
In the end, there was no pressure for us to make any decision that day. Ultimately, everything would hinge upon the success of Nurse Ida’s endeavour in helping us to find an appropriate male carer for Sebastien. I would be interviewing interested participants she had identified in her pool of nurse applicants via Skype when we returned to Singapore. Only when I had found a carer would the Bali option gain any traction.
Finding a carer with good English skills and the desire to take on such a job would be no easy task. Although Nurse Ida sent us off with a radiant smile, we were left with an impression that the prospect was quite bleak. All we could do was hope for the best.
At any rate, the visit was over. Nothing life-changing would be happening on this trip. We would not be leaving Sebastien behind. With several pieces still missing in the Bali option, our existence would still be in limbo. Instead of feeling upset, I breathed a sigh of relief. While it was important for us to move on with our lives, there was still a part of me that was glad that I could hold onto my son for a little longer.
* * * * *
On the last day of our recon trip, I visited a special needs school for the poor on my own. Before our departure, I had emailed several special needs schools in Bali in the hope that they could refer me to individuals whom I could train to take care of Sebastien. Feeling the need to justify my decision to set up a separate life for Sebastien overseas, my email had been an impassioned one that documented my homeschooling journey of Sebastien and my plight.
Of the two schools that responded, one of them gave me an unexpected invitation. The school director, referring to herself as Ibu (meaning “Mother” in Indonesian, and a polite way to refer to a woman in Indonesia) Surya, explained that it was extremely tough to find an experienced carer who spoke good English in Bali due to a lack of educational and professional training. However, she gave me a thorough overview of her free special needs school for the poor and invited Sebastien to join the school.
I was utterly taken aback by Ibu Surya’s hospitality and openness towards Sebastien and me. After all, I did not mince words when I explained about my difficulties with Sebastien’s aggression. I wasn’t sure if she knew that she would be letting in a lion into her school. Even though I wasn’t sure whether her offer would truly be appropriate for us, I felt obliged to visit the school to say “hello” and thank her for her extraordinarily kind email.
My original plan had been for all of us to visit the school. However, after seeing Sebastien’s reaction at the old folks’ home, I decided that there was no point stressing him out about this school that he might or might not be going to. Instead, only I would visit the school, while Jerome would take Sebastien to the beach with the black sand and the exciting waves that he had really enjoyed. Then we would all congregate at Cecilia’s house. She had kindly invited us to go to her home for lunch before we left for the airport.
To this day, I still can’t put my finger on what exactly transpired at the school for my initial impression to be completely transformed. When I first saw the school grounds comprising two bunk-like buildings, along with an outdoor area that contained a small playground with weathered swings and a slide, my immediate reaction was: “Forget it. It is too small.” It wouldn’t take long for Sebastien to rampage through this tiny space. Access to the common entry and exit point was via a narrow corridor flanked by a shelf for shoes. How could the teachers and children have space to run out?
However, I couldn’t just take off now that I had arrived. When I asked for Ibu Surya, a young lady told me to wait outside the classroom. I looked through the window of a classroom, where a petite woman, with long shiny black hair that draped over her white flannel blouse and even extended to her blue sarong with batik motif, was speaking to a group of sitting adults. Could she be Ibu Surya? Based on her formal writing style that conveyed a sense of timeless wisdom, I had the impression that Ibu Surya would be an elderly lady.
I couldn’t devote too much time to speculation as I literally had my hands full. A skinny child, who seemed to be six years old, was grappling my legs. In spite of all that I was feeling, there was something about the innocence of this trusting child who would come up to a stranger asked to be carried which made me smile. As I picked him up and swung him around in a circle, I felt strangely happy and carefree. This feeling was refreshing; I had not felt like this in a long time.
Then Ibu Surya stepped out with an older European lady, who towered over her by almost two heads. She was Martina, a board member, who played an important role in fundraising to support the running of the school. Standing next to each other, they looked like odd partners. Yet, I felt instantly comfortable in their presence — Ibu Surya who irradiated warmth and joy, which lit up her eyes and tanned skin, and Martina looking like a wise and gracious ballerina with her hair tied up in a bun behind her head. She emitted tremendous strength and determination in the compassionate gaze of her bluish-grey eyes.
The next two hours flew by, as I sat enveloped in the loving and empathetic embrace of these two ladies. They listened to me as I cried and professed my exhaustion, guilt, and disappointment with myself and how Sebastien had turned out to be. As I vented my anguish, they comforted me by validating my homeschooling journey with Sebastien and acknowledging the pain that I was going through with my pursuit of the Bali solution.
Regardless of what I said, neither Ibu Surya nor Martina was fazed by Sebastien’s aggression. Martina joked that they would be ready with helmets and their Pilates and yoga moves: “Don’t underestimate us. We have our moves.” It was true that both Ibu Surya and Martina were very likely to be far less fragile and far more agile than their slim figures suggested. But it was Ibu Surya’s more serious response that conveyed substance and conviction, which I took to heart: “We would have been scared if we had not known about his aggression. Now that you have told us about his aggression, then we know. And we can be prepared. At our school, we deal with difficult behaviour with understanding, compassion, and love.” She made her assertions with such an iron-clad conviction that no one would dare to be dismissive of her words.
And when they took me on a tour of the school, I was amazed at how it had become transformed in my eyes. The school grounds that had once seemed too small and inadequate had expanded significantly. I had also not seen the spacious traditional pavilion covered with tiles where the students did large-group activities like yoga and arts and crafts. Even though the actual physical space had obviously not changed, somehow their love and understanding had expanded its possibilities for me.
Just before I left them, Martina left me with a piece of advice: “You should try to think positive about Sebastien.” At the time, I barely registered what she said; in fact, it would take me a day or two after the trip to apprehend the wisdom of her words. In bracing myself for Sebastien’s attacks and things going wrong at all times, I had allowed Sebastien’s aggression (both real and potential) to taint my perspective of him.
By the time I left Ibu Surya and Martina, I felt like a revived and energised mother. At Cecilia’s house, where I rejoined Sebastien and Jerome, I could interact playfully with Sebastien without feeling weighed down by any fear. In fact, the positive effects of this extraordinary encounter would continue to linger over the subsequent days in Singapore. I came to see that I could enjoy Sebastien during his calm moments while maintaining my vigilance about his aggression. These two opposing sets of sentiments — fun and joyful versus alert and prepared — did not have to be mutually exclusive. Ultimately, I did not have to allow Sebastien’s behaviour to define our entire relationship and strip it of the love that I knew that we bore for each other.
From then on, I tried hard to keep the faith and belief that everything would turn out okay instead of succumbing to my habituated fear of Sebastien. I decided to love him with defiant joy and strength, as though I was countering his aggression with a hug and a massage. I refused to let the weight of his self-injurious behaviour and aggression crush the lightness of my love and joy. It was nice to praise him frequently for the things that he was doing right and adopting a fun and playful stance towards him. Instead of anticipating his attacks, I let myself enjoy his harmless, but quirky, behaviour during no-drama moments like when he was doing his exaggerated walking that looked as though he were trying to take off into the sky. And when potential triggers occurred, I made a conscious decision to stay relaxed. For instance, if a Uber car was tardy, I would massage Sebastien, instead of fretting about the time by checking my phone repeatedly. Essentially, I chose to focus on what I could do, rather than allow myself to be rendered helpless and disempowered by all the things that were beyond my control.
With this shift in my perception, I experienced even more epiphanies that challenged my previous thinking about parenting an autistic child. For the longest time, I had believed that it was important for a parent to have control over the autistic child in order to manage him/her, to make sure that s/he was compliant. Without this control, there was precious little that we parents could do. Thus when I ultimately lost all the control I had once enjoyed over Sebastien the young man, it made me feel powerless and useless as his life guide.
However, I had come to see that our tug-of-war over who had the power and control over the other did nothing except to undermine our relationship and push Sebastien to use his aggression to gain an advantage over me. With my changed perspective of how I wanted to interact with Sebastien, I could focus on celebrating our homeschooling life and cherishing the positive moments with Sebastien, instead of constantly dwelling on the negative aspects. For instance, I chose to take pride in my customised writing templates to enable Sebastien to do his academic work independently and our incorporation of household chores that had equipped Sebastien with the life skills to cook and clean for himself.
My revamped perspective of Sebastien wasn’t just about putting a positive spin on everything. Instead, it was about finally acknowledging the complexity of being a mother of an autistic young man. This meant letting go of Sebastien the little boy and the desire to return to the days when I had felt safe and in control of the parenting terrain. In doing so, I was coming to terms with the reality that Sebastien was a grown adult who was striving to assert his inner life, albeit with a body language that I was still trying to figure out. But more significantly, I had to recognise that just because I could not decipher the messages did not make them any less valid.
During that intense week after our return from Bali, I felt so connected to Sebastien, the young man, that I would even question whether I still wanted to move him there. However, it wouldn’t take long before I would be forced to acknowledge that I couldn’t sustain this positive flow of energy by myself for too long. I needed the support of people like Ibu Surya and Martina to help me keep going. These were individuals who appreciated and celebrated Sebastien for who he was — his beauty, strength, and struggles. To me, Bali held forth a bigger life for him with more people whom I hope would come to love him, because Jerome and I could no longer carry the full weight of loving Sebastien by ourselves. He deserved so much more love and attention than we were able to give him without feeling burnt out.