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Bye Bye Bali 1.0, Hello Bali 2.0: Building Back Better for My Autistic Son

by Choo Kah Ying

Hari (Sebastien's carer for the past 6 years) and Sebastien with me on a video call; family holiday in Australia (Nov 2022)

In mid-October 2022, Bali Bubble 1.0 — the bubble that we had painstakingly constructed and maintained for Sebastien, my autistic son, over the past 6 years — erupted into smithereens. B., one of the carers who lived with his family and Sebastien, my autistic son, at the villa, was in prison: he had been charged with assaulting his girlfriend with a weapon. To say that we were shocked would be an understatement. Over the past few years, he had projected an impression that he was a “family man” who prioritised his family and their future above all else. Once upon a time, he had been great for Sebastien. Using Google Translate, he was able to articulate his pure joy at being with Sebastien, and back then, he was open to learning how best to look after Seb. He had passion, commitment, and humility...

It’s hard to know why, when and how he crossed over to the “dark side.” But during COVID-19, we weren’t able to visit Sebastien for two years and three months. In many ways, the edifice of Sebastien's life had looked great, even as we were nervously sensing changes beneath the surface, in particular with the carer's attitude and his seemingly endless demands for money or loans. At some point, I felt as though I was running on a treadmill: however hard I worked, whatever I did to try to sustain the happiness of this Bali Bubble, it never seemed good enough. At the same time, based on my conversations with other Balinese about their pay, I knew that my salaries for my carers — Hari and B (even including B wife, upon the latter's request) — were on the generous side.

Ultimately, given all that had happened, I realised that whatever I did was never going to be good enough to stop B from destroying our Bali Bubble.

Amidst the debacle, people have commented that I was far too trusting, kind, or generous. Although I feel greatly saddened and betrayed by B (though I bear no ill will towards his wife in particular who has loved Sebastien in the way she could), I don’t regret a single thing I did for this Bali Bubble. If anything, I knew that I had done everything I could and I could hold my head high. How could I fault myself for being driven by a selfless pursuit of others' happiness?

Instead, what has pained me is to realise that both Sebastien and Hari (the carer who had been with Sebastien for the last six years) had been literally "silenced" in their fear of B for several years. It had gotten to the point that I thought Seb had “forgotten” his English words — all we had heard from him this year, when we finally visited him in person after Covid-19 was "yes" and "good." However, once Bema went into prison, Sebastien began to speak and articulate far more words, which bowled us over during our recent trip together (Nov 2022). When we spoke recently, Hari, my remaining carer, told me with great confidence that Sebastien never "forgot" his English words. And I came to realise that even Hari himself had also been communicating little with me over the recent years, despite our closeness at the beginning of his work with Sebastien. Now, even he too was opening up.

Nonetheless, beneath the surface, Sebastien had still been healing, growing, and maturing in Bali, despite Bema's oppressiveness. In the meantime, all of us who genuinely care about Sebastien have been working hard in our evolution to improve our understanding of what it takes to be a worthy and respectful carer and parent of Sebastien. And at the first opportunity, Sebastien has shown us his inner self! It was amazing to experience.

But I am a parent who does not dwell in regret; I have a son who inspires me to move mountains. Once the shock had eased, what was left was a sense of relief. It was as though everything was now out in the open, even though the truth was unpalatable. Only with full transparency could we start afresh. As I surveyed the debris of the bursting of the Bali Bubble 1.0, I could only see the opportunity to build back better for Sebastien with Bali Bubble 2.0. Already, we are taking the steps towards the new chapter of Sebastien's life, which is filling me with great hope.

For those who are interested to know more about Bali 2.0 and my dream of an autism community, please PM me.


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