It’s been a little past two years since we moved Sebastien, my autistic son, to Bali. What a roller-coaster ride it has been with exhilarating highs and heartbreaking lows. During this time period that seems to have just flown by, there have been changes to the carer team looking after Sebastien, where he lives, and the institution of Sebastien’s independent life. Today, my husband, Jerome, and I visit him regularly, and take him out of the country for longer holidays, while regulating his life remotely with our carers’ help.
Looking back, I have needed this amount of time to begin plugging the huge gap in my existence, which was once almost exclusively filled by my homeschooling life with Sebastien and my subsequent struggle with managing his adolescent and young adult self. He had been my purpose for living for 20 years. Without him, I was lost... for a while.
Thus, this time has forced me to confront my own frailties and carve out my own identity, areas that have been neglected and overlooked for two decades, because Sebastien’s needs and interests have always dwarfed mine or engulfed my entire being. Getting reacquainted with myself has not been easy: you realise that a part of you is still an immature 21-year-old self who hasn't quite grown up, even though you are now in a middle-aged body. I have had a lot of catching up to do.
And above all, this passage of time has helped to alleviate the guilt that once kept me wide awake at night, picturing Sebastien, perhaps feeling alone, bereft of family, in the still darkness of the surrounding rice paddies. For the longest time, the pendulum swung between whether we had done the right thing or committed the worst mistake of our life. I am still coming to terms with our poignant reunions, of which our time together is far more fleeting than our time apart, acknowledging that they will forever be tinged with the sadness of our inevitable departure.
Nonetheless, at this juncture, as Sebastien settles into a new home, cared by two amazing carers who truly strive to understand him, we can take heart in this journey that has given us insights into his inner life, thanks to our fortuitous encounter with Dr. Antonio Rinaldi. Although Sebastien continues to grapple with growing pains, he embraces Bali as his chosen home and his dynamic life that includes Sari Hati School, household tasks, my self-designed worksheets for basic literacy and numeracy, surfing and swimming pool therapy, skating, hiking, and new skills.
On most days, at least, I like to think that we have done the right thing by Sebastien…