Remote Parenting of My Autistic Son
by Choo Kah Ying
When Angelia Poon, a former classmate of mine and a wonderful supporter of A Mother’s Wish, invited me to contribute an essay on Sebastien to an anthology (she was editing) that would bring together concepts of feminism, kinship, and ecology, I thought that she had given me a “mission impossible”. Little did I know that I would be walking down memory lane and "re-living" my one-of-a-kind journey—from being a single mother of her young autistic son, Sebastien, to forging an independent existence for him in the rustic village areas of Bali. Through this unpremeditated process of building an extended family for Sebastien in pursuit of his happiness, I would discover an extraordinary kinship that transcends borders and cultures.
To read this essay found in the anthology, please go to:
Making Kin: Ecofeminist Essays from Singapore contemplates and re-centres Singapore women in the overlapping discourses of family, home, ecology and nation. For the first time, this collection of 18 ecofeminist essays focuses on the crafts, minds, bodies and subjectivities of a diverse group of women making kin with the human and non-human world as they navigate their lives.
Preorders are available until November 5th. Thank you!
Here is an excerpt of my essay:
Finding A Home for Sebastien, My Autistic Son: From Peucang Island to Bali
By Kah Ying Choo
Sebastien with Bema, one of his carers, and Bema's family (Sebastien's "siblings")
Hari, the other carer, and Sebastien, during our video call, when we are showing them a music video of the line rider by Matthew Buckley
...In our extended family web, with Sebastien’s well-being at the centre of our concern, we have an optimal distribution of roles and labour. While Jerome and I are better positioned to generate income with our jobs, our carers are shouldering the full hands-on responsibility of looking after Sebastien. Due to their physical and psychological proximity to Sebastien, Jerome and I make it our imperative to ensure that our carers are never unduly encumbered by any financial stress, knowing that this could affect Sebastien. Apart from giving them raises and bonuses regularly, we have always stepped up to serve as a “no-interest” bank for them by extending them loans to cover family commitments that inevitably arise, such as medical costs, a pregnancy, and schooling. But just as our family boundaries have blurred in the pragmatic aspects of life, we have also become emotionally attached. Both Jerome and I mourned when Bema’s fourth child died in infancy; across the ocean separating our respective islands, we were also shedding copious tears.
Recently, a parent of a special needs adult insisted that there was no way that she would entrust the care of her daughter to the locals in Bali, the way I had done with Sebastien: “I would never move my daughter to Bali unless you were living there watching over the locals. You just never know and our children cannot speak up.” Her scepticism did not plant the seeds of doubt in me. I have become accustomed to parents of special needs and autistic kids telling me how impossible it would be for them to do what I have done. Instead, their reaction has given me an even greater appreciation of the special family that we have created for Sebastien. While our journey had begun with a desperate leap of faith in strangers living in a rural community with its own unique culture and mindset distinctively different from our own, we are proud to have broken free of our societal notions of a family to include those who are unrelated to us by blood, and love them just as deeply. To us, our atypical family offers the ultimate affirmation in the best of humanity.
