Week 16 of Serialization of Where Does My Autistic Son Belong? Chapter 16 Sebastien's Decision
In 2019, I published Where Does My Autistic Son Belong?. It chronicles my struggle with raising my adolescent autistic son, Sebastien, and my subsequent decision of setting a home for him in Bali. As part and parcel of A Mother’s Wish initiative (amotherswish.com.sg) to raise awareness about the need to treat autistic individuals with genuine respect and empathy, I am serializing the book on Medium (please see the links below for all the serialized chapters to date, including Chapter 16).
Flying to Bali: Sebastien dozing on the lap of Jerome who cradles him during the flight—a poignant of when love is not enough to keep us all together.
from left: Packing Sebastien's possessions; An existence in suitcases and bag packs; and Putting on a brave face at the departure gate of Changi Airport, Singapore
(July 25th — August 26th, 2016)
The odds stacked against us returning to Bali were very high. Despite my inexplicable confidence that the universe would somehow make this happen, I did feel paralysed in reality. I was torn between waiting even in the face of the possibility that the Bali option might never happen and pressing ahead with my preparations for the transition as though it definitely would. Stuck in this limbo, I moved sluggishly in my preparation of a slightly new training package to enable me and the carer to create Sebastien’s new life in Bali.
The radio silence of Nurse Ida certainly did not help. However lovely Nurse Ida and Dr. Citra were, they were still strangers who really did not owe us anything. Could I really count on them to help us find potential candidates to look after Sebastien? Moreover, I also wondered whether their efforts would be successful since they barely knew Sebastien. It had been hard for Jerome and me to nail down what we were exactly looking for in a carer. Although Sebastien had autism, we weren’t looking for someone with an in-depth knowledge of autism. What was more important to us was that the carer possessed the openness of mind and heart to care for Sebastien, as well as the physique to handle his meltdowns in a calm and composed fashion.
In the meantime, as we waited for Nurse Ida to get back to us, I was feeling the weight of caring for Sebastien even as I tried to treat him in as loving a manner as possible. The need for constant vigilance — be it triggers, potential meltdowns, and unpredictable moves that he was making, which could lead to an unforeseeable incident — was still exhausting. (read: Chapter 16)...