In a case of a double whammy, Choo Kah Ying who had suffered manic depression since her teens, had a son, Sebastien – diagnosed as autistic at 18 months. Instead of drowning in despair, love of her son pushed her to pull herself together sans medication. Hence, her autobiographical book, Five Little White Pills… And Then There Were None (Armour Publishing).
Author’s talk: 12 October 2013, 2-4pm at The Loft, 268A South Bridge Road (off Smith Street). The $10 admission fee includes refreshments. RSVP: firstname.lastname@example.org There will also be a mini-exhibition of paintings by Sebastien.
Like many others of my generation, autism is synonymous with Rain Man, the 1988 film starring Dustin Hoffman and Tom Cruise that swept the 1989/90 film awards all over the world. While haunting and poignant, it was only years later that the disorder became real to me as more friends and acquaintances identified their children’s problems as autism.
Today, you’d have to be living on a tree not to know a little about autism. Although there’s more awareness and support, what more can a first-world country do for the marginalized? There is something not right about putting our money only where we can see more money. Apportioning some revenue to projects that bring out the best in us (including animal and wildlife causes) will invite criticism and debate, but so what? Surely in a supposedly civilized nation, every life, even the ones some consider beneath us, is worth caring about.
I ask Kah Ying:
What would mums of autistic children appreciate from the state and the public?
“Fundamentally, we parents of autistic children wish that our darlings were given the same support, resources, and opportunities to enable them to realize their potential, whatever that may be.
Sadly, in Singapore, the government has chosen to focus primarily on typical children whose families benefit from hefty subsidies when they attend school; yet families with autistic children are paying out-of-pocket for education and basic support services. This state of inequality essentially turns our children into second-class citizens in this society, which is sanctioned and promoted by the government’s actions.
As for the public, we ask for understanding and compassion, in acknowledgement of the fact that individuals with special needs and their families have a harder life than most, which is not caused by their own doing. Instead of frowning or glaring at our children (and us), just give us a smile as a show of support; this can help us to go about our stressful lives, especially when we are out and about in the public space.
For the past few years, since Sebastien has shot up during puberty, I had been stressed out about how Sebastien’s behavior could offend or be misunderstood by the people in Singapore. When I went to France recently with Sebastien, I was surprised by how kind and considerate people could be. Apart from the warm smiles I received from strangers in public, there were waiters who treated Sebastien respectfully and one did not even charge us for the food he ate. Others showed sensitivity and care when they could not understand what he wanted, simply turning to me for clarification, with the respectful attitude of not wanting to distress him. Then there were my boyfriend’s extended family and friends who said “hi” to him, brought him food and drinks, at a huge garden party.
On the flight back to Singapore, I wept because I had been so touched by the many wonderful experiences we had with the French people. They showed me how an enlightened society would treat a person with special needs and supported me in claiming a place for Sebastien in mainstream society.
Ultimately, it should not just be a matter of autistic people doing their best to behave adequately in public, but also that people in mainstream society recognize that people with intellectual disabilities could exhibit behaviors that are hard to understand. If Sebastien’s behavior were to conform to society’s standards at all times, he wouldn’t be autistic. This interaction has to be a two-way street, driven by courage, openness, compassion, and acceptance.”
There is always the worry about what would happen to autistic people in adulthood, after their parents are gone. Well, it’s the same worry for all with special children. How can society help to allay fears of such parents?
“You have raised an issue that is uppermost in the minds of most caregivers. In fact, this year, I started a campaign called “A Mother’s Wish” (learn more about it on www.awakeningminds.sg) in my endeavour to provide affordable quality programmes for individuals with intellectual disabilities requiring lifelong supervision, such as those with autism. My vision is to create a community made up of the aforementioned beneficiaries, caregivers, caregiver and professional service providers, assistants, and volunteers, which will support families and continue the raising of these individuals even after the caregivers have passed on.
The vision is modeled upon my homeschooling programme that I am constantly evolving, which strives to encompass diverse activities: academic learning, creative arts, fitness, life-skills, and vocational training. By forging a network that encompasses service providers providing small group programmes and offering substantial manpower support, as well provide a subsidy to families, this campaign aims to make quality programming affordable for families.
I have sought to engage the government to support me with this project, because it is my belief that the government should be responsible for catering to the needs of special needs individuals in this country and ensure the sustainability of the programme in the long term. However, it has decided not to support this campaign in any shape or form.
Independently of my dialogue with the government, I have also been promoting awareness of this campaign through talks at schools and interactions with the mass media (including our appearance on “Joy Truck” Episode 8 on Channel 8), as well as via the exhibitions and sales of Sebastien’s art. We have been raising money for the campaign fund, principally thanks to Sebastien’s donations of 30% of the sales of his art to the fund. To date, Sebastien has sold 60 paintings and raised over $5,500 for the campaign fund.
Sebastien’s contribution to this campaign through his colourful and dynamic paintings is significant for two reasons:
- Despite significant delays in communication and learning, as well as the mainstream society’s neglect of people like him in Singapore, Sebastien pursues his life with enthusiasm, courage, and passion; thus, he is a powerful inspiration to all of us. The sad truth is that, until we appeared on TV, most people who met him on the street would not know that he was an outstanding painter and skater, or that he has been trained to care for himself in the home. He cooks, cleans, and follows a schedule independently of my supervision. There is much more to special needs people with intellectual disabilities, which meets the eye. We as a society need to re-examine our perspectives of such individuals.
- In addition, in having Sebastien contributing to the campaign, I wanted to send a message to others — what we strive to do with our vision is to empower people like Sebastien to contribute to society to the best of their ability, not for them to be helpless, dependent individuals who are cared for. Many of us parents have worked hard on our children to empower them to realise their potential. Through the campaign, I hope to leave behind a community — an alternative family who would continue to guide Sebastien and others like him for them to be contributors to society.
Expecting families to raise their children with special needs without any assistance imposes a crushing burden on them. Instead, when a society steps up to the plate and shares in the responsibility of guiding these special individuals, it not only eases the load of these families, but it also creates a genuinely caring, compassionate, and inclusive community that challenges us all to be better people.