Week 10 of Serialization: Where Does My Autistic Son Belong? Chapter 10: AN UNUSUAL PROPOSAL
In 2019, I published Where Does My Autistic Son Belong?. It chronicles my struggle with raising my adolescent autistic son, Sebastien, and my subsequent decision of setting a home for him in Bali. As part and parcel of A Mother’s Wish initiative (amotherswish.com.sg) to raise awareness about the need to learn treat autistic individuals with genuine respect and empathy, I am serializing the book on Medium (please look out for the others chapters under my name).
Part 3 The Long Good-Bye
CHAPTER 10
AN UNUSUAL PROPOSAL
(Dec 10th, 2015 — January 9th, 2016)
“I can take Sebastien to live with me in the Philippines… A small house with a garden. We can grow vegetables and even sell them to earn some money. Sebastien can go to the school with the others. It is a small town. He will be part of the community like everyone.”
This unusual proposal came out of the blue one day in July 2015 from Lucinda, a highly-experienced helper who had been caring for an autistic young man since his childhood years. We had been primarily in touch on the phone from time to time, ever since I met her at her employer’s home almost 10 years ago. Thus, she was aware of the troubles that I had been having with Sebastien.
My heart quickened. I half-laughed at her idea, thinking that she was just joking, and half-leapt at it. It was as though she had read my mind — the part of me that had fantasised about a bucolic existence for Sebastien in a rural environment that was closer to nature. The seeds of such an existence for Sebastien were planted back in April 2010 when Jerome, Sebastien (almost 14), and I had enjoyed a paradisiacal, five-day island holiday on the islands near Krakatau. What distinguished this holiday from all others was the fact that we were far removed from “civilisation”. In this realm, there were no sounds of motor vehicles; all that we could hear was the gentle lapping of the ocean. With no access to the Internet, we were cut off from the outside world for five days.
In this environment, Sebastien seemed to be even more “anti-social” than usual. During our hikes, he would often forge ahead to the point where he was completely out of sight or lingered far behind us. When we had to follow the National Park Ranger who resided on the island, Sebastien would rather walk alongside the equally quiet man who was clearing the vegetation for us with his parang (Malay word for “machete”) than hang out with the rest of us.
On the third night, we managed to persuade Sebastien to break his holiday routine of staying put at night in the room to do his colouring and accompany us to the still ocean in the beautiful quiet of the night on Peucang Island. With his pyjama pants folded tightly up to his knees, Sebastien waded tentatively into the water. I watched him closely, curious to see his reactions to new and unusual situations.
What I saw amazed me. Sebastien was so quiet and still in his being. He was at one with the dark water lapping around him, the quietness of the night air, as well as the moon and the stars shining in the sky above. I was transfixed. You see, Sebastien in Singapore couldn’t stop moving. For instance, when he was riding in a commuter train, his eyes would dart rapidly from one side to another as he tracked the outside scenery swooshing by. At the same time, he would be fidgeting non-stop, while scratching different parts of his body. It was impossible to watch him for too long without getting motion-sick.
Despite my efforts to emulate his stillness, a constant commentary was running through my mind: I hope no fish is going to bite Sebastien. Oh wow, I can’t believe how quiet he is. Where is Jerome? He is missing this. In my “monkey mind”, words and phrases were struggling for a piece of my attention. Clearly, I was not attaining the quietness that Sebastien seemed to have slipped into with natural ease.
I wish this moment could have lasted forever, i.e., Sebastien could stay in this optimal state forever. Even though I could not fully understand what was happening with Sebastien, I could sense that this was something special. For a change, Sebastien seemed to be “home”. I could see that this was where his being was most at peace. It made me feel both elated and sad — elated that he was experiencing such a peaceful state of being and sad because it would be fleeting and rare.
Over the subsequent days, I saw Sebastien’s tendency to maintain his distance away from us in a different light. At that point, I could understand that Sebastien wanted to be left alone to commune with nature, without the stress of having to socialise with us in any way. After all, we did not have many days on the island. Even if we had stayed longer, it would not have been long before the arrival of other tourists encroached upon the magic of this holiday.
On the last day of our holiday, when we were staying for a couple of nights at a hotel in Bandung before flying back to Singapore, Sebastien wept copious tears quietly. Sitting at the formal office table as he did his colouring, Sebastien did not seek us out for comfort. Instead, his outpouring of tears took place in complete silence. Although we tried to comfort him, Sebastien turned his body away from us. He was right. There was nothing that we could have done to make him feel better.
Watching Sebastien cry like this, it was hard not for me to feel similarly aggrieved. As a homeschooling mother, I had assumed the responsibility of charting the course of Sebastien’s life. Despite my hefty investment of time and effort into running a homeschooling life for him over the past five years, Sebastien was unhappy in Singapore — a place where he spent most of his life.
However, at that time, I could not think of any alternatives. All I had was a kernel of a fantasy that I cultivated during our days on the island. I pictured Sebastien living in a small village on an island within a local traditional family household full of people, young and old. My images of these “imaginary people” were inspired by our encounters with friendly Indonesian and Myanmarese people in rural communities, who seemed to take to Sebastien with a natural sense of compassion and an instinctive desire to protect him. During the forays on the island, as I wandered past thick foliage, dangling vines, and thick bushes that suddenly opened up to beautiful rock pools and the ocean, I had already wondered whether Sebastien could participate in the stream of life of such a community, be it learning how to fish, fixing fishing nets, or planting vegetables. So when Lucinda made her unusual proposition, the Peucang island holiday and the image of Sebastien all quiet in the water, under the moon and the stars, popped up, as fresh as though it had happened just yesterday.
However, the feeling of excitement, of being free from the tyranny of Sebastien’s violence, was tempered by the voice of caution at something that sounded too good to be true. The proposition was fraught with risk: how could I entrust the care of Sebastien to someone I barely knew?
Moreover, the Philippines was an unfamiliar country for both Jerome and me. To top it off, the images from the Internet we pulled up of Bongabon — her hometown — did not conjure up a particularly flattering portrait. It was a run-down and ugly small town with shack-like stalls, a local school, and a basketball court.
At the end of the day, we couldn’t make a firm commitment without seeing the place in person. We also didn’t want Lucinda to base her life decision on our commitment. So I told her that if she decided not to renew her current contract and returned to the Philippines of her own will, we could visit Bongabon then, with no strings attached. So we left the situation in a bit of a limbo.
Then, in October, Lucinda informed me that her home was destroyed by Typhoon Koppu. This essentially meant that the plan was also dead in the water. The only way to revive it would be for Jerome and me to help her rebuild the house. However, this was a serious investment, made even more unattractive by the threat of typhoons, which we had hitherto not known about. At the same time, Sebastien seemed to be doing largely fine with us, apart from the occasional bouts of banging his own head with his fists in frustration. So the submergence of this solution into the watery depths didn’t seem like such a bad thing.
* * * * *
However, after all the series of incidents that culminated in Sebastien’s entry into the mental hospital, I contacted Lucinda to revive our dormant conversation about her proposal.
“I am ready to let go.”
These were the first words I said to Lucinda when Jerome and I met her again. I had chosen them deliberately; they were the very same ones that she had used before we parted back in July 2015: “Let go. You need to let go.”
She smiled, “I think you are now… Before, I sensed that you were not 100% ready. But now I think you are.”
Even with her affirmation, I felt the tears welling up in my eyes. Am I 100% sure about such a decision? Will I ever be certain of this course of action? As the momentousness of what I was about to do sank in, I shuddered. Goose pimples popped up on my arm. It took everything I had to steel my resolve and project a façade of certainty. The refrain playing over and over in my head was inspired by Ann Bauer’s article: “He may have a good day today. But one day, he will kill me. Letting him go is the only way to give both of us a chance of having a good life.”
During that meeting, Jerome and I committed to visiting Bongabon with Lucinda when she would be taking her one-week leave that took place once every two years. Setting the wheels of this option in motion brought home the reality of what we were about to do. This was no longer an amorphous and theoretical proposition, but something that entailed a hefty investment of money and trust. There was a need for us to find the money to buy a house for Sebastien and Lucinda to live in. We were already crunching some numbers during our discussion. Lucinda also highlighted the need to factor in some form of compensation for her should we terminate her employment of Sebastien prematurely, as she had the alternative option of renewing a five-year contract with her then-employer in Singapore.
But even more challenging than these practicalities was the grief that had a stranglehold on the very core of my being the moment the plan was hatched. I was just confused by the utter disconnect between what I had decided to do and how I was feeling. Despite initiating the process and getting everyone on board with the steps that should be taken, why was I not feeling happier, at least just a little bit?
Instead, as I returned to daily life and prepared for our overseas trip, fatigue that I just couldn’t seem to break loose clung to my bones. It was easy for me to ignore Sebastien’s compulsions, letting him do whatever he wanted. Perhaps, I was tacitly telling myself that they would no longer be my problem. I felt so tired that I couldn’t even raise my voice: my speech was low and quiet, much like my depression days. Instead of feeling alarmed, I sought refuge in this depressed state, letting it be a buffer that allowed me to distance myself from Sebastien. In the meantime, I focused on arranging his paintings — the part of him, which I considered to be manageable.
Yet the fact that I could be overtaken by a sudden need to cry was a constant reminder that grief had become a new and prominent resident of my inner world. As I began this process of grappling with this whole notion of the overseas solution, with all its unknown ramifications, grief was settling in, planting its roots within the cracks and crevices of my vulnerable being. Back then, I could not have imagined how drawn-out our long goodbye would be and how trying the grief would become in the days that loomed ahead.
To make things worse, I felt utterly alone in my grieving experience. Even though Jerome and I had gone through the actions of speaking with Lucinda together and discussed the practicalities, we did not share our grief with one another. Going for this overseas solution was akin to someone putting a gun to our head. Neither of us embraced the idea of Sebastien living with carers who did not love him as we did. We also wondered whether the carers would be able to put up with Sebastien’s challenging behaviour for the long haul.
But we did not feel that we had a choice in the matter. As Sebastien’s aberrant behaviour escalated and expanded towards more and more spheres of life, living our waking life according to his dictates was a daily nightmare. This heavy, oppressive, and tiring life was already imposing an exacting toll on our relationship. As things became increasingly difficult for me with Sebastien, I kept looking to Jerome to protect me from Sebastien’s erratic attacks. If he could only be my knight in shining armour, everything would be all right. Yes, I was even fantasising about such a patriarchal ideal if only we could avoid having to make such a life-changing decision. But Jerome wanted to play no part in my fairy tale. One night, he thrust me back to reality with his brutally honest statement: “I’m not your bodyguard.” Though I wanted to deny it, for it was too embarrassing to admit, Jerome had spoken the hard truth. I had expected him to be my bodyguard to protect me from my son.
We could not do this forever without destroying our relationship.
At the same time, forging a new life in a foreign land was a life-transforming mission that demanded conviction and fire. Both Jerome and I needed to have been embracing the idea with enthusiasm and unequivocal certainty that we were doing the right thing. Instead, we were approaching it like two people being dragged into doing something against our will. For us, we were making a choice between nightmares.
In our love for Sebastien, Jerome and I mirrored each other perfectly in our pain and uncertainty over an immediate future when Sebastien would be away from us. However, at the time, I was too blinded by my own grief, exhaustion, and powerlessness to acknowledge our grieving experience and come together with Jerome. As a result, we grieved in our own “silos”, making the experience even more isolating and painful.
The reactions to our overseas solution from family and friends represented two camps: my friends and family from Asian countries that had limited social services versus Jerome’s friends and family from European countries with strong social policies. Within the Asian context, no one I spoke to — family and friends in Singapore and Hong Kong — gave me their blessing to go down this road less travelled. Many were shocked that I would even entertain such a proposition. As the mother of a very mild-mannered 26-year-old autistic man declared, “I would never hand over the care of my son to another person.” The ideas they proposed, be it purchasing a flat in a more “natural” environment and putting Sebastien on psychiatric medication to make him more manageable, all revolved around Sebastien staying in Singapore with me as his primary carer.
To Jerome and me, purchasing a flat in high-priced Singapore would be of poor value, given the fact that Sebastien would still be living like a caged lion yearning for the savannas of Africa. Moreover, Sebastien and I would still have to operate within the confines of the densely-populated urbanscape of Singapore that is heavily governed by rules designed to elicit conformity. For Sebastien, the young man, caught up in his throes of asserting his desires and preferences, everything about this city-state was constrictive. Whenever I took Sebastien out in public, I was always weighed down by the worried and intimidated glances of people who were easily put off by his sudden lurching movements and his atypical mannerisms. Our travels overseas had enabled us to experience far more encouraging attitudes that range from compassionate to accepting. Furthermore, these countries still offered natural spaces that provided some breathing room and respite from the relentless pace of city life.
The other solution of putting Sebastien on psychiatric medication so that he could tolerate living in an environment for which he was ill-suited in all ways also felt wrong. As I was aware that the effectiveness of psychiatric medications depended on accurate patient reports of the effects, it would be extremely challenging to make the best decisions in terms of the drug and the actual dosage without Sebastien’s input.
And their belief that I should continue to live with Sebastien only reflected their blissful oblivion of how bad my life had become with Sebastien. All of them were utterly clueless about what it was like to have to cope with Sebastien’s growing anxieties and experience his meltdowns day in and day out. In my current life, I was living from minute to minute, not knowing what it would bring. From their vantage point of reasonableness and normalcy, they could not even begin to imagine what I had had to put up with for the past five years. They were akin to non-swimmers sitting by the poolside, not getting their feet wet, while watching me flail my arms in vain for help. The gulf between the autism universe and their normal life was just too unbridgeable for them to grasp my predicament.
Even though I realised that they were outsiders with little experience of autism universe, I felt misunderstood and hurt. Did they think that I would pursue an overseas solution for Sebastien lightly? Already, I was grappling with a battle that was raging within me — the grief of having to let go of Sebastien, while convincing myself that it was the best thing that I could do for him. What I needed from the outside world was wholehearted support, not outright arguments against my decision. Fending off their arguments was exhausting and frustrating.
In stark contrast, Jerome’s family and friends who come from European countries were not at all shocked by my consideration of such an option. In an affluent country that boasts of a rich array of social services, such as Norway, special needs adult children are given the support to live independently of their parents. They live in their own apartments, assisted by professionals who are responsible for the daily care and management of their lives, depending on their functioning abilities. What was even more striking was hearing our Norwegian friend speak about the separation of the lives of parents and their special needs adult children in a matter-of-fact and pragmatic manner. Viewed from this perspective, the overseas option was a milestone of life, albeit one with a challenging twist, since Sebastien would be living in a country away from us. I was most grateful for such an illuminating and refreshing perspective: instead of seeing our mission as a tragedy, it could be considered a celebration of Sebastien’s independence from me.
I was also appreciative of the insights offered by Jerome’s sister and brother-in-law, Isabelle and Julien. Even after listening to my challenging account of my life with Sebastien, they were able to resist the temptation of making easy, biased judgments. In particular, Julien was overflowing with compassion and empathy when he acknowledged my reluctance to pursue the overseas option: “This is a complicated situation; frankly, there is really no right or wrong decision. If you can convince yourself that you can keep on looking after Sebastien, then, by all means, do so. But it does not sound as though it is tenable to you any longer.” Even though he had not known me for a long time, Julien immediately refuted what my family and friends in Asia had presumed about my overseas solution: “You may not have an exact plan yet. But I know you will not just abandon him.” At that moment in time, I was most grateful for his vote of confidence in me and the person I was.
Much as I was appreciative of these far more positive perspectives of the situation from the European camp, they were still inadequate in counterbalancing the grief that became a constant in my life. Moments before bedtime were particularly difficult for me. In the darkness of the night, I would be suddenly overwhelmed by powerful waves of sadness. Images of the unique and charming Sebastien with his infectious smile, typically during our holidays, would crowd into my mind. My awareness that my freedom from the tyranny of Sebastien’s challenging behaviours would come at the hefty price of giving up all that was good about him was devastating. A life without Sebastien’s larger-than-life personality and infectious smile would leave a huge hole in my heart, which I didn’t know how I could ever fill. The darkness of the night only reinforced my fear of this existential void that threatened to swallow my entire being.
So one could say that contemplating about a life without Sebastien was almost as frightening as, if not more so, than one with Sebastien. After all, hard as my life had been with Sebastien, it was still a way of life that was familiar to me. Perversely, the fights, meltdowns, and the rigid routines offered a solid structure of security for Sebastien and me, however dysfunctional this life had been for both of us. And thus, I would lose my already tenuous sense of “home”. Due to my childhood of being a child of a United Nations diplomat, I had never felt that I had “roots” in any place or culture — elements that constitute what most people readily refer to as “home”. Thus, “home” for me was where Sebastien and Jerome were. But a home where Sebastien and Jerome would be in different places was essentially a broken home.
Finally, I would think about my identity once I stopped being a homeschooling mother of Sebastien. For the past decade, our homeschooling life had permeated every sphere of my life, inspiring my books, articles, and blog posts on parenting Sebastien and even workshops on homeschooling and parenting strategies. It had also penetrated into every aspect of my being. Who would I be if I could no longer identify myself as a homeschooling mother of my autistic son? Would Jerome still see me as an extraordinary mother who had turned her life around for her autistic son once Sebastien was gone from my life? Without this relationship, I didn’t have an identity narrative. Until Sebastien came into my life, all that I had as a single adult was an existence racked by the cycles of mania and depression, which could have destroyed me in their wake. As a result, I never developed a stable adult identity independent of Sebastien. Without Sebastien, from a psychological and existential standpoint, I was a Jane Doe.
Pause.
Take a deep breath.
Exhale.
It wasn’t all bad. There were some nights when I was cheered by the prospect of sloughing off my role as an embattled mother of an autistic teenager and regaining my own identity. But, at the time, I did not go very far in wondering what that process would be like. It all seemed too early.
And between these two extremes of dark despair and euphoric fantasising was the stance of fatigue, resignation, and emptiness. This state of mind could perhaps be captured in this statement: “I would not have to care anymore.”
Essentially, the existence of my three “states of mind” showed the emotional limbo that I was in. I was suspended between a present that I no longer wanted and an alternative future that was fraught with the unknown. So to will myself to move forward, I would actively conjure up the images of Sebastien’s aggression towards me to banish my sadness so that I could finally fall asleep. It was my ultimate tool for nipping my self-doubt about this decision in the bud. At the end of the day, amidst all these competing forces buffeting me towards either direction — moving Sebastien or not, the true driving force pushing me towards an overseas solution was the fear that I would be severely injured or die in his hands during one of his meltdowns. Although this flight impulse would wax and wane over time, it would remain a constant in propelling me towards a future whose only certainty was its unknowability.