Towards the end of August, Jerome and I decided to move Sebastien, my 20-year-old son, from Singapore to Bali. Over the past six years, we had had to struggle with Sebastien’s increasingly explosive meltdowns, characterised by high anxiety and extreme need to control everything and everyone around him. In making our heart-breaking decision, it was our hope that Sebastien would begin a transition towards a life that was independent of us and live in a nature-oriented environment more suited to his sensory needs.
Fraught with Obstacles
However, our initial attempt to set up Sebastien’s life in Bali was paved with obstacles. Within the first three days, the homes we had honed in on via the Internet and the inexperienced carer we had hired from Java did not work out. Only Sari Hati School, a loving school for poor students with special needs, which had made an unusual gesture of accepting Sebastien remained available to us. In fact, when we first arrived in Bali, Ibu Renata and Ibu Sari gamely told us to embark on our house search, while they involved Sebastien in the school activities. Even though they did not know have any learning materials from me, they were confident that they could engage a young man with aggressive tendencies they barely knew This was when I began to recognise the power of a loving environment. You see, when you prioritise loving and embracing special needs kids with patience, passion, and perseverance, you will connect with them naturally. This is the essence of the Sari Hati School.
In addition, Sebastien also gave me his blessing for Bali, telling me unequivocally “Bali” many times, when I told him about our challenges in finding a home and carer. But as I watched Sebastien cope valiantly with hrough all his stress and anxiety about moving to Bali (expressed through intense physical movements of moving me towards him and pressing on his head), I knew we had to make Bali happen. And with a slight change in our strategy, we managed to find him a home surrounded by rice paddies and a carer in quick succession.
It Was Taking a Village to Raise Sebastien
Leaving Sebastien for the first time after being his primary carer for 20 years was akin to losing a limb: as I strode through the airport, I couldn’t help, but feel that I had left “something” important behind. And of course, I had, except that it wasn’t a thing. But my departure would prove to be even harder for Sebastien who banged his head and pounced at his carer almost right after he left. As his primary carer struggled to cope with caring for Sebastien, Ibu Sari and Ibu Renata rallied around him. When his primary carer stopped responding to me via WhatsApp for three days, the two ladies visited the house regularly to check on Sebastien and let me know that the carer was still looking after Sebastien. As I contemplated whether to return to Bali earlier, Ibu Sari simply asked me this: "Do you trust us to look after Sebastien until you return?" Knowing how inconvenient this would be for them, I asked them whether they were fine with checking on Sebastien in the home. She said "yes" with a big smile and thanked me for my trust in them.
This was the magic of the "Bali way". We had taken a leap of faith by transplanting Sebastien to a foreign land and put our trust in people we hardly knew. And they, particularly the ladies at Sari Hati School, had gone above and beyond to reaffirm what it means to be part of humanity.
Meeting Dr. Antonio: Into the Autistic Mind and Heart
Our experience with Dr. Antonio Rinaldi (a clinical psychologist based in Italy with a love for surfing) in Bali enabled me to finally understand why Sebastien’s entry into puberty turned our life into a living hell. Unlike behaviour-oriented perspectives that are focused on outward appearances and performance, Dr. Antonio helped me to understand the heavy burden that autistic individual carry in order to live in our society that does not understand them. Because our lack of understanding and expectations that they behave according to our norms, we add to their anxiety and alienate them from us. Sebastien’s massive meltdowns are an outward manifestation of anxiety that has been accumulating for two decades. And with growing awareness and sensitivity to the world around him, his anxiety has continued to increase.
Most challenging of all, I learnt that, as his primary carer, I held the key to loving Sebastien. Essentially, we parents are the mirrors for our autistic children; they look towards us for guidance in a life that is fraught with anxiety due to their heightened sensibilities. To lessen their anxiety, we parents need to be role models of happiness for them — being truly connected to the part of us that are filled with joy. This is how we can reassure our autistic children that everything would be alright throughout their challenging journey.
Thrust into Next Phase of Transition
Unfortunately, despite cognitively recognising the soundness of this strategy, it has proven to be hard for me to execute with Sebastien. For a start, much as I had hoped that Bali would offer all of us the ultimate happy solution, it was a compromise that was hard to accept for both Sebastien and me. Each separation and reunion was heart-wrenching, particularly when Jerome was around. For me, it was a painful reminder of the good moments when all three of us were together, which were now rare and always fraught with the sadness of inevitable separation.
Over the months, as we continued to grapple with Sebastien’s explosive meltdowns once every three weeks, I was far from the model of happiness. Moreover, none of us, including the new carers, was able to alleviate his anxiety by providing strong guidance to Sebastien in the face of stressors of living in a village with electricity outages (which would disrupt the lights and water supplies) and uncertain changes in the external environment (sights, sounds, and smells).
And when I suffered from severe insomnia that left me sleep-deprived for one and half months, both Sebastien and I were thrust into the next phase of our transition — long separation periods of up to two months. After being off medication for 11 years, I had suffered a manic depression relapse in the middle-aged phase of my life, which could have been triggered by perimenopausal changes. While such a development was terrible on all counts, it did come at a time when I already had a stable team of carers, whom I knew and trusted to take care of Sebastien. For whatever it was worth, I had done my best not only to have forged a new life for Sebastien with his carers in Bali, but also imparted my love for Sebastien to them.
A Year of Reckoning
What this humbling year of ups and downs has helped me to realise is that there is no one-size-fits-all solution for families struggling with autism. What are the implications of this statement?
In Singapore, organisations tend to focus their attention on special needs adults who can work according to mainstream norms. In fact such norms also govern how they view and treat adult children with special needs who do not meet these criteria, which means that inadequate assistance is provided. This is why, despite visiting several facilities in Singapore, we still moved Sebastien to Bali.
There are professionals who genuinely believe that they have the effective prescribed solutions that could “cure” autistic individuals or transform their lives for the better. And they feel frustrated when autistic individuals continue to exhibit challenging behaviours, which suggest that their carers are not implementing the solutions “correctly”. On my part, I believe that the implementation of “correct” solutions is far more complex than meets the eye, particularly in the long term. It depends on the autistic individuals, their carers, and the circumstances. For instance, while I do know that Sebastien and I are so bonded that my feelings about myself and him can affect his well-being, I also need to acknowledge that I am often not as able to manage my emotions as I need to be for his sake. Yes, the memory of the violent thumping of his head or him pouncing towards me still exerts a chilling effect on me. Having experienced many episodes over several years, the unpleasantness of the incident and the hurt that I experienced in the aftermath have become etched in my bones. It will take time for me to get these negative experiences out of my system.
Another thing that I will also need time to get used to is the creation of my own life. Two decades of being a caregiver of Sebastien, which had infused my life with a deep sense of purpose, has had a negative effect on me. Until I had Sebastien at the age of 24, I had been a troubled young woman struggling with the cycles of mania and depression without a grounded sense of self and identity. Thus, my “adult” persona had been completely tied to being the mother of Sebastien, an autistic child, whereby Sebastien’s needs had always eclipsed mine. And now, in my endeavour to forge my own identity, I have been grappling with a terrible sense of loss of direction and meaning. This journey has been made harder by my need to cope with the unpleasant side-effects of the medications that I am taking (including hair loss and weight gain).
Why A Mother’s Wish?
In moving ahead with the causes of A Mother’s Wish, I would like to build a business with funds that can go towards supporting Sari Hati School in the long run in order to assist poor families with special needs kids.
Of course, I am also a big supporter because Ibu Sari has made an exception by allowing Sebastien to be part of this amazing community. But what is even more important is that Sari Hati School is a truly outstanding special needs school because it has succeeded in building a community of students and teachers who care for each other like family. Its values of love and connection as a basis for building a special needs community should be promoted everywhere. For instance, to initiate change in a society like Singapore, we need to start planting ideas of change at the grassroots level, among schools and parents. We need to think about moving away from our obsession with performance in order to take into consideration the overall well-being of many special needs individuals who may not be able to “perform”.
Only then are we able to offer more options for families struggling with their special needs loved ones. With A Mother’s Wish and my continuous, albeit, changed relationship with Sebastien, I remain a mother who hopes that I can do my part to leave behind a community who will love and guide my son and others like him.