Recently, when a mum struggling with her autistic son sought my advice about an overseas option because of my experience of moving Sebastien, my now 23-year-old autistic son, to Bali, I found myself taking stock of the reality that it had been more than three years since this life transition. But what threw me off balance was the emergence of the overpowering feelings of guilt and remorse reminiscent of those early days. Until then, an overall sense of gladness had come to permeate my being since things had begun to work out for us after 18 months of inner and outer turmoil.
Certainly, I had thought that penning a 463-page book, Where Does My Autistic Son Belong (also available on Amazon Kindle), about this painful chapter of our life would have been cathartic enough. Yet, as another family pondered this prospect, I found myself conjuring up the spectre of the past and feeling the weight of its shadow cast upon my happiness. Now I can see that it had simply been human nature’s defence mechanism, which had kept all those uncomfortable feelings at bay.
Nestled in my relatively mundane life in Singapore, I look back on those early days with incredulity: Boy, what Jerome (my husband) and I had done was crazy! For this venture, this “social experiment”, potential solution, or whatever you could possibly call it, could have gone just as wrong as it could have gone right.
It was thus little wonder that our decision to pursue an overseas solution for Sebastien was not widely supported by family members or friends in Singapore. Setting up a new life for Sebastien in a place where we knew no one, where I wouldn’t be by his side at all times, was way too risky for anyone to contemplate. Yet conversely, when my book was published and Sebastien's life had turned for the better, we were lauded for our courageous decision.
But, if you were to think about it, the two descriptors — “risky” or “courageous” — were two sides of the same coin.
The truth was that, back then, I did not feel that I had the luxury of evaluating the overseas solution along those lines. I was not fully cognisant of the risks that we were taking. Or I might not have gone through with it. At the time, my vision was limited to what was just ahead of me, often making snap decisions in response to the pendulum swing of circumstances. As far as I was concerned, I was just trying to survive, doing my best to stay afloat amidst tumultuous waves of life threatening to swallow me whole.
Certainly, I was also unaware of the extent to which I was turning the conventional approach of fixing the autistic child to suit the mainstream environment on its head. Based on the typical perspective, it seemed obvious that the aim should be to make the autistic children as close to the “norm” as possible so that they could thrive in mainstream society. After all, it is far harder to change the norms of the majority. This thus means that the onus falls on our autistic children to be the ones to change, to become more acceptable to the rest.
And for many years, I was resigned to such a reality. Sebastien had to conform to the expectations of where he lived, i.e., Singapore. Even though our trips abroad had long revealed that he would be far happier living in a more natural environment, I had not known how I could pull it off. If not for Sebastien's increasingly frightening meltdowns, I might not have taken the plunge.
What is different about my mixed emotions at this current vantage point compared to my previous grief during our quest for an overseas location is that I could appreciate our Bali move for what it truly was. Even though the decision was driven by desperation, it was, nonetheless, a gutsy leap off the cliff to an unknown destination.
If we had not taken that leap of faith, nothing would have changed. We would have continued to be stuck in a terrible cage-like existence with limited options for happiness. My ongoing encounters with other families trapped in all-too-familiar cycles of fear, pain, and angst have only reinforced my awareness of the significance of what we have accomplished.
In the end, the decision would turn out to be the best thing we could have ever done. It gave us a lifeline when I had thought that our doom was inevitable. But we didn't know that at the time: we just took a chance, not knowing much about where we would land and what shape we would end up in...
Despite my efforts to make some preparations that included creating a mammoth instructional manual for Sebastien's future carers, what ensued in Bali had developed in a far more organic way in response to circumstances, both actual and unanticipated. We simply started out with a skeleton of our previous homeschooling life in Singapore, with his now-easy access to nature and motorcycles (primary mode of transport), along with his attendance at a free special needs school for the poor, thrown in. Subsequently, Sebastien's Bali existence evolved to include surfing and swimming pool therapy, after a chance encounter with a clinical psychologist who was pivotal in introducing us to Sebastien’s inner life.
Many people who hear about our transplantation of Sebastien to Bali often leap to the conclusion that it was the nature that helped to transform Sebastien’s life. But as romantic as such a notion is, the actuality has been far more complex. For the longest time, a pivotal element was missing — at least one strong and loving carer who could take over the care of Sebastien from me.
During the first 10 months, while I shuttled between Singapore and Bali, staying for approximately two weeks at a time, Sebastien was still banging his head and attacking me, almost like clockwork, at least once every visit. Certainly, my periodic comings and goings, charged with grief and guilt, only added to his anguish. Confronted with the lack of adequate carers who grasped Sebastien or had his interests at heart, I did not have a specific game plan or a timeline on how I could wean him from me and cultivate his independence.
Sebastien’s state of being continued to deteriorate. We were just hanging on by a thread, coping with our daily life, hardly thriving. Turning our lives upside down and splitting up our family, with Jerome hardly seeing Sebastien, seemed to have been for nought.
Ultimately, it was a concatenation of unplanned events — a plot full of twists and turns worthy of a movie (you would have to read it in my book) — that culminated in our current team of two carers. Within a period of 18 months, three carers were fired and one went to jail, which would fortuitously introduce our ultimate carer who possesses the intuition, acumen, and passion to care for Sebastien, into our lives. Propelled by his initiative, Sebastien began to experience a life that encompassed a proper balance between exposure to new activities and a sense of security.
And as we hit our three-and-a-half year mark, our “crazy” and unpopular Bali decision has been vindicated. Through tremendous heartbreak, we have ultimately severed the umbilical cord of co-dependency between Sebastien and me. Both Sebastien and I have managed to construct separate fulfilling lives, away from one another, with clearly-defined boundaries. My role as a mother has become transformed into one of a "caregiving project manager", dealing with Sebastien’s care from a distance, with the carers doing the in-person work. Jerome and I visit him once every two months, bringing him supplies from Singapore and taking him on holidays in Bali and overseas. These visits are also an in-person way for us to check on how Sebastien is doing, even though our carers send photos of his activities everyday and connect us with Sebastien through WhatsApp video calls three times a week.
For many people, Sebastien’s progress is superficially represented by the expanding scope of his life from self-care, cleaning, cooking his own meals, painting, skating, and travelling (what he had already been doing when he was still living in Singapore) to the more recent and challenging activities of surfing, carpentry, farming, and rock stacking. Certainly, I have been complicit in reducing Sebastien’s progress to what he can do simply by sending photographs of Sebastien’s latest exploits. It is a shortcut for capturing his well-being to many people at a go, without having to get into any explanations.
Unfortunately, indulging in this convenience only feeds into the prevalent preoccupation of “fixing” autistic individuals and demonstrating their worth, based on their ability to do things. With this article and the work of A Mother’s Wish, it is my mission to challenge this mindset.
You see, what has actually “worked” with Sebastien is that we have stopped focusing on what Sebastien could or could not do. Instead, we pay attention to his well-being. In lieu of changing his outward behaviour, we acknowledge it as a barometer of his state of being. It guides us in letting us know the extent to which Sebastien feels supported and pushes us to learn his unique way of communication and expression. Spending time with Sebastien thus offers a constant reminder for us to be empathetic to his endeavour, however difficult we find his behaviour to be.
Getting to this mental place has been an integral part of my own journey to redefine my identity of being the mother of an autistic young adult. It first began with my re-education that included acknowledging the error of my previous ways. In spite of my best intentions, I had been guilty of imposing my constraining expectations on him. I had wanted him to be a model autistic young man based on some kind of preconceived notions of what that was supposed to be. My opportunity to forge an authentic two-way relationship only came about when I genuinely set out to know Sebastien from the inside.
Instead of pushing for more words with rigid scripted sentences, I opted to accept and go along with Sebastien’s “language”, characterised by utterances of few, but carefully-chosen, words and limited, repetitive “conversations”, as well as body language, gestures, and touches for the expression of emotions. For months on end, we participated in Sebastien's initiated “conversations” revolving around his smelly “ninja” farts, “ants” (itchiness) on different parts of his body, and exaggerated hiccups/burps, not minding their lack of meaningfulness or quality. It was a way for us to connect with one another.
We also spent a significant amount of time massaging Sebastien’s feet, head, neck, and shoulders, and cuddling with him. Apart from regulating his senses and anxiety when he felt overwhelmed by unhappy events or difficult environments, we also considered the use of body and touch to be ways of interaction, which were unequivocally pleasurable for him.
In the swimming pools of hotels where we stayed at, I played along with Sebastien’s game of collecting twigs, leaves, and frangipanis, which had fallen into the water, naming them and “transporting” them merrily to deposit them on the grassy patches alongside the swimming pool. Even though this behaviour was part and parcel of his compulsive tendency to have clear and consistent surfaces, uncluttered by “foreign” elements, I didn’t mind or care. I wanted to learn how to interact with him, while reining in my tendency to bring in my own agenda.
It was immensely liberating as a parent to finally foist off the conventional expectations of what a parent would want of her child. I had a simple objective — getting to know Sebastien. To ensure that he would feel that he could be himself around me, I made a conscious effort to suspend my judgments. I wasn’t so much adopting a parenting approach as going with the flow and seeing where it would take us. As with all things related to Bali, I was just winging it.
Nowadays, I can recognise the value of these simple and repetitive interactions. During those instances, there were no barriers between us: we could understand each other perfectly. Such instances helped to anchor our relationship and give Sebastien the critical sense of security to change and develop when he was ready..., in his time, not ours.
Although my interaction style began as a one-sided accommodation of Sebastien’s preferences, I would come to discover its unique value for me. Interacting with Sebastien on his preferred terms offered a one-of-a-kind lived experience. There was an undeniable novelty about using few words and relying on touch. I learnt to quiet my mind and being so that I could sense Sebastien’s energy and intensity when we hugged. Oftentimes, I would often be so subsumed in this universe that it was only when we had left Sebastien that I would come to realise how little I had spoken during the previous days that we were together.
What had made this scary was that I had no idea where going down this road would lead us. A part of me contemplated the possibility that Sebastien might just stop speaking altogether. But I was willing to take that risk to maintain his well-being as the top priority. It was more important for me to learn what it meant to truly love my autistic son unconditionally.
However, this has not happened. On the contrary, Sebastien has become more vocal than before. Although he still doesn’t speak in full sentences, Sebastien makes a big effort to help us understand his requests by verbalising “clue words” and enunciating each one of them as clearly as he can. He is also increasingly eager to share what he sees during our travels. As we go past them during our road trips, Sebastien would read signs like “restaurant” and “pizza” out loud. When we repeated his words to show that we had heard him, it was a moment of connection, of sharing what we had all seen together!
Similarly, he has gone from pointing out things he sees in the distance like an aeroplane to stating the colours. He seems to be prolonging the conversation and “showing off” his language ability. And because we make it a point to stop and gaze at the aeroplane with as much interest as he does, Sebastien indulges us by engaging in a simple chat we initiate about it afterwards. Referencing the colours of the aeroplane, we would ask him whether it is Air Asia, an airline that he is very familiar with. In posing the question, we do not care whether he gets it right or wrong. Oftentimes, the aeroplane is too far for us to be sure. What matters is our investment of time and effort in a common subject-matter of interest, even if it lasts only for the briefest of instances. In "accumulating" such episodes, my aim lies in demonstrating to Sebastien our unconditional interest in what he loves. As I acknowledge and celebrate his baby steps of progress, I continue to plant the seeds with no expectations, but eager anticipation.
On our most recent overseas trip to Croatia, Sebastien further surprised me by using “new” vocabulary appropriately, revealing that he had registered the words and references I had previously taught him on his “radar” after all. Because he had not uttered them in the past, I had assumed that they had fallen by the wayside, as with many of their counterparts. Thus, I was thrilled to hear him use “take off” properly in two different contexts — seeking our helping in removing his sweater during a hike and sharing his excitement about the commencement of a flight. And despite never showing any interest in sunsets, no matter how many spectacular ones I had tried to share with him, Sebastien would point out a beautiful sunset to me during this trip. It was not so much his perception of the sunset, which moved me so deeply, as his awareness of how much I love them and his desire to convey it to me. This episode marks yet another stride forward in his connectedness.
Finally, in our swimming pool game of retrieving flowers, Sebastien has come to consider me an invaluable "partner", reaching out to hold my hand to make sure that I come along with him on his expeditions. I am now able to introduce the even more names of the different items we are picking up — twigs, rotten leaves, frangipanis, bougainvilleas, and dead bees — to Sebastien and hearing him repeat them back to me in acknowledgement, without any prompting. Most recently, Sebastien even allowed Jerome to modify his pool operation. Jerome played the part of a boat who "transported" Sebastien to different parts of the pool for his flower retrieval operations. Sebastien liked Jerome's so much that when Jerome was hugging me in the swimming pool, Sebastien came up to us to bump me off so that he could get back onto “his boat”!
This is just a small sampling of the subtle things that we had noticed about Sebastien’s changes in communication. There is so much more that I could be sharing, but what Sebastien is able to do now is not the point of my writing. After all, I had not doubted Sebastien’s ability to do things, since his entry into puberty. This had not been our struggle back when he was living with us in Singapore. Already back then, he had impressed us with his sense of independence, initiative, self-care skills, painting talent, natural skating ability, and much much more. Yet his capabilities and talents were perpetually overshadowed by his debilitating meltdowns. Regardless of what he was capable of doing, his life was destined to be doomed.
In stark contrast, Sebastien of the past 18 months has been happy and fulfilled. You can see his transformation in the photos of him hammering away with a gigantic smile on his face, while building toy houses, or stacking rocks with quiet focus and relaxed shoulders. The days of uncontrollable aggression and self-injury now seem to be a nightmare from another life.