Serialization of Where Does My Autistic Son Belong? Chapter 19: Rocky Start
This post features Chapter 19 of my 25-chapter book, Where Does My Autistic Son Belong? (Links to all other chapters are below)
A Special Note
Like everyone else, I am a sucker for tidy, happy endings. Thus, I wish I could have proclaimed that our life after moving Sebastien to Bali was a “happily ever after.” The reality is that it would be years before the days when I could embrace the course of my action unequivocally would outnumber those when I am assailed with self-doubt. Even so, there are still moments when I would shudder at how tough it must have been for Sebastien when we still didn’t have the right carers in place. Without a common language of communication, it would only through trial and error, i.e., Sebastien’s reaction, which would help us to see which carers genuinely cared for him versus those who were only there for the money.
This is why Sebastien is a hero in my eyes. For he embodies courage and perseverance in surviving those adverse circumstances, without ever giving up on Bali and on us to make things better. And he was right; we got a lot better at managing the situation, though it took a bit of time. So when people laud me for my strength and courage in embarking on this bold solution, I am embarrassed. Nothing I have experienced — even the grief of letting Sebastien go and the crisis of losing my core identity as a homeschooling mum for a decade—could compare with what he had had to go through. Ultimately, I never had to face anything alone; I could still talk to someone. In contrast, Sebastien had had to navigate through all the emotions imaginable by himself.
But most of all, what the last couple of years have taught us is that any complacent belief that Sebastien is all settled is just magical thinking. After surviving the unprecedented pandemic during which we didn’t see Sebastien in person for two years and three months, we know that the choice we have made has an ever-evolving dynamic. Ensuring the security and sustainability of our Bali Bubble is the minimum. How we can better support Sebastien in dealing with the growing pains of being neither adult nor child in the conventional sense will be an ongoing challenge in the forthcoming days…
Sebastien — a full-fledged adult at 26 — in July 2022
Sebastien with the carers and family (Bali Bubble)
Our thank-meal with our carers, July 2022
Connecting with Sebastien — our reunion in April 2022 (after 2 years and 3 months apart)
This book will take you to just the end of the first year of what has now turned out to be a six-year “social experiment” of transplanting Sebastien, my now-26 year-old non-verbal autistic son, to Bali, and still counting. For more recent updates of what has since happened, you can check out the blog on A Mother’s Wish Website. Or better yet, support Sebastien’s future by becoming a VIP Patron on Patreon (just SGD21/month), where you can receive a monthly e-pub of his latest paintings and my updates about his life with photographs, among other rewards.
(September 17th - early October 2016)
During the two and the half hours of my flight to Singapore, all hell had broken loose in Bali. But I was blissfully unaware. So long as I was up in the air, I could entertain the idea of Sebastien leading a happy and independent life without me.
However, when I landed and turned the “airplane mode” off, the phone started to ping with a whole series of disjointed WhatsApp messages from Rafi. Between the broken English and missing pieces of crucial facts, I couldn’t make heads or tails out of what had exactly happened. All I could tell was that Sebastien had taken Rafi by surprise and lashed out at him after I had left. Despite sending off multiple messages to get further clarification, the picture didn’t get any clearer. How Sebastien had lashed out at Rafi, the extent of Rafi’s injuries, and the situation with Sebastien remained unknown. Rafi’s incoherent replies that left a huge vacuum in my mind only fed my dark existential fear that Sebastien had caused irreversible damage to Rafi or to himself. What have you done, Sebastien? (read Chapter 19)