Raising an autistic child takes love, patience, hope, and a good support system. But what happens when your autistic child grows up?
Choo Kah Ying tells her heartbreaking real life story of how she painstakingly nurtured her autistic son to adulthood and why she had to let him go to save him – and herself.
It had been 24 hours and there was still no sign of Jean-Sebastien Choo since he stopped communicating with his parents. His mum, Kah Ying, was worried sick until the call she had been waiting for finally came. It was the caretaker who was in charge of looking after her 22-year-old son all the way in Bali, Indonesia.
“I found him at home but he locked me out and refused to let me in for over two hours,” says the caretaker frustratingly over the phone. “I don’t know how much longer I can go on caring for him when he’s like this.”
Kah Ying sighed. It was the same old story.
Sebastien was autistic and she had been dealing with his erratic behaviour since he was diagnosed at just 18 month of age. She was used to these meltdowns, which increasingly became harder to manage as he grew from a shy little boy into an anxious young man.
After she felt threatened by his growing physical strength and her inability to control his violent outbursts, she made the difficult decision to send him away to Sari Hati School in Bali that caters to children and young adults with mental and physical disabilities.
“I had to send him away”
“It wasn’t easy. I knew I had to send him away because he was taking out his frustrations on me, the person closest to him, and displayed really aggressive behaviour towards me. He would attack me and I would fall back against the floor or a wall. I began to think that he might accidently kill me one day,” Kah Ying explains.
“Yes, it was a hard decision to make to send your son away but I also didn’t want to see him suffering anymore. So I started researching for places that could take him in and provide a safe environment for him to grow and learn, and live independently like a regular person.”
The single mum says that life in Singapore actually compounded Sebastien’s behaviour because he was stressed out by the fast-paced way of doing things here.
He loves being outdoors, however, and Bali with its quiet natural surroundings seemed ideal.
“Living in Bali has given him frequent exposure to nature: He goes for his surfing therapy and hiking once a week. In Bali, Sebastien has been living amidst rice paddies, which has given him more of a natural environment than Singapore. He’s much calmer now,” she notices.
Lying awake at night
It’s been a little over two years since that fateful move and what a rollercoaster ride it has been for the Choo family. Kah Ying, who is in her 40s, describes the process as a period of exhilarating highs and heart-breaking lows.
“I used to lie awake at night, picturing my son feeling alone in the darkness of the surrounding rice paddies. For the longest time, the pendulum swung between whether I had done the right thing by sending him away or committed the worst mistake of my life,” she reveals.
Seeing Sebastien accept Bali as his chosen home and his dynamic life at Sari Hati School has alleviated some of that guilt for the mother of one, who visits him once every two months.
“Sebastien still has his good days and bad days. He has had a few head-banging and aggressive episode at school, but what’s heartening to see is that the staff there aren’t afraid of him. Rather they want to guide him and allow him to explore his emotions,” she explains.
“On most days, I like to think that we have done the right thing by Sebastien. I think the separation was somewhat necessary so he could have a space to grow up without dependence on me.”
Autism is a lifelong neurodevelopmental disorder and is characterised by difficulties in social interaction, verbal and non-verbal communication and repetitive behaviour.
One in 150 children in Singapore live with autism, a higher rate than the World Health Organisations global figure of 160 children.
The government has identified the rising number of people with autism as a key trend affecting the disability sector, and said it was important for future services to address the wide spectrum of needs.
Kah Ying, who runs a social enterprise called A Mother’s Wish because she was concerned about her autistic son’s future, agrees.
“The Singapore government needs to support families of special needs kids by ensuring that all of them have equal and affordable access to education and therapy services. I felt very alone when I was struggling to raise Sebastien in Singapore,” she says.
That’s part of the reason why she started A Mother’s Wish. Sebastien’s artworks are available for sale on the website, which helps to create a sustainable source of revenue for him.
Apart from that, there are also educational materials targeted at special needs learners available.
“Before I pass on, it is my dream to offer Sebastien and others like him a strong and loving community that will engage them with a well-rounded programme on a daily basis. We hope to support their families in providing them with a meaningful life of dignity.”
A version of this article first appeared in The Singapore Women’s Weekly
Photos: Choo Kah Ying