Today is an emotional day for me. My carers took the initiative of taking Sebastien, my autistic son, on their first-ever overnight trip with two nature-loving friends whom Sebastien was meeting for the first time.
One of the "must-do's" in Bali — the Mt. Batur Trek to catch the sunrise — had seemed impossible. The 4am starting time had made it a daunting prospect ever since Sebastien transformed into an adolescent and young adult who was prone to meltdowns.
The last and only other time he had had to wake up so early was 10 years ago, as Facebook coincidentally reminded us today, when Jerome and I took him to Mt. Bromo, also in Indonesia. Back then, the 14-year-old Sebastien had become an adaptable traveller after being bitten by the travelling bug thanks to Jerome. Amazingly, Sebastien coped with a gruelling 10-day trip, waking up during the wee hours of the morning to catch sunrises and a train ride.
Of course, back then, we had taken his 'compliance' simply as something to cheer about, not realizing the full extent of the toll that it took on him. I certainly didn't appreciate it when he abruptly snapped on the last day of the trip. At that time, his reaction had seemed uncalled for; after all, the hardest part of the holiday was over.
Today, I am cognizant of the reality that much as Sebastien enjoys travelling, it can still be a veritable challenge for him. For him and many other autistics living in our midst, it is not easy to live in a world that does not make the effort to acknowledge their differences and address them in a respectful fashion.
This is why today, June 6th, 2020, is so special for us as a family that includes our carers. It is a culmination of a heartbreaking decision to move Sebastien away from us to a more natural setting and an amazing journey of forging a 'community' for him.* We thus salute Sebastien and our carers for coming such a long way in setting an example of what it is like to learn to care for one another.
Almost four years later and more than four months since our last in-person visit due to the COVID-19 lockdown — the longest we have gone without visiting one another, we can say, without a shadow of a doubt, Sebastien and the carers are well.
* Read about our journey in my latest book: Where Does My Autistic Son Belong
Part of the proceeds go towards Sebastien and A Mother's Wish to support families with autism and a free special needs school in Bali for the poor.