Caring for our son on the autism spectrum is a marathon,
but will we be there at the finish line?
As Ms Andrea Tan sinks into her sofa and switches on her smart television, foreign characters appear on the YouTube interface. The language settings were in Spanish.
The electronics engineer gets over her bewilderment quickly, having come to expect the unexpected in the Koh household. “Darius, please set the language back to English,” she tells her 14-year-old son with a laugh.
While Spanish is deeply unfamiliar to Ms Tan and most Singaporeans, Darius immerses himself in it, writing and reciting it. He can also count in French and Hebrew, all self-taught via YouTube.
In his room, puzzles – of the English alphabet as well as shapes and colours – are placed across two foam mats. In the corner, an iPad plays a counting song on repeat, and Darius sings along with his mother as he alternates between fixing jigsaw pieces and placing one finger on the YouTube play button.
He cannot speak in full sentences, but strings together enough words to ask Ms Tan to sing more songs with him. While he is not attuned to most social cues, he initiates a “hello” and a wave with people he is familiar with, such as neighbours and family members.
“Basically, he is like a five-year-old trapped in a 14-year-old’s body,” said Ms Tan, as she goes on to describe how her son on the autism spectrum has no awareness of road dangers.
“Individuals on the autism spectrum, though some may be non-verbal or have different takes on social interactions, are all hoping to be accepted by the people around them.”
WORLD TURNED UPSIDE DOWN
When Singapore was thrust into a two-month circuit breaker during the pandemic in April 2020, the term “home-based learning” entered the education lexicon. However, it was a misnomer to Darius.
In his eyes, his home in Punggol is all about fun while school is in Lorong Napiri, where he attends AWWA School, a special education institute.
His father, Mr Winson Koh, struggled to supervise him on school days from 9am to 3pm. “I had to occupy him every minute,” said Mr Koh, who had to guide a distracted Darius through everything from Mathematics and English comprehension assignments to stretching exercises.
Then came the meltdowns. Darius tends to throw his belongings or bang on tables when he is restless. His parents, who are both 48, would respond differently. Ms Tan usually waits until Darius calms down before engaging him; Mr Koh remains close, poised to enfold him in a bear hug to prevent the adolescent from hurting himself.
Work took a back seat for Mr Koh, who is self-employed in the construction and engineering sector. “COVID-19 taught us a lot of things. My business slowed down but it turned out to be a blessing as I spent more time with Darius and got to know him better,” he shared.
IT’S A MARATHON
Unlike his neurotypical peers, Darius cannot take public transport independently and has to be accompanied by his father, his chaperone. His mother is his playmate who reads and sings him to sleep.
The early morning journey to school comprises two bus rides and a short walk that takes 45 minutes in total. At the gate, Mr Koh lingers for a few minutes to ensure that Darius makes it safely to his classroom. Sometimes, Darius turns back and waves.
After that, Mr Koh, an avid ultramarathoner who has completed 50km races, jogs back home, a run that covers 10km to 12km. “It’s my ‘me time’ to destress, but even while running, I’m still worrying about him,” explained Mr Koh, who usually dreads phone calls from the school for fear of bad news about Darius. Once, they had gotten a call as he had hurt himself.
In the afternoon, a school bus drops Darius off at a special needs student care centre in Bishan, and Mr Koh makes the hour-long journey from Punggol to pick him up at 5pm. Then, it’s dinner at NEX shopping centre or Mr Koh’s parents’ home in Serangoon, or the Bishan interchange coffeeshop.
Sometimes, strangers approach Mr Koh in public when Darius involuntarily makes loud noises to self-regulate. They ask him to “control his son”.
“I tell them ‘I’m sorry, my boy is autistic’,” he recounted with a resigned shrug.
THE FINISH LINE
While the Kohs have come to terms with Darius’ condition, it was not easy when he was diagnosed at around 2.5 years old. Detailed check-ups lasting two to three hours each time, coupled with a lack of understanding of the condition, made for an emotional and frustrating experience.
Soon, the couple started spending up to $3,000 a month on Darius’ speech and occupational therapy sessions as well as medical fees, on top of the cost of hiring a domestic helper to help care for Darius. It was a tremendous financial burden, but they got by with family support.
While their expenses are lower now as his condition has improved and they no longer need a helper, worries persist. They fear the day they are no longer around for Darius, their only child. Their biggest concerns are his physical safety and financial independence – worries that have no easy resolution.
“When it comes to our plans for his future, we sometimes avoid discussing more. Not because we are not worried, but we know very well in our hearts that there are limitations to what we can do for him,” said Ms Tan.
For Mr Koh, the race is never-ending. “I run to keep myself healthy so I can take care of Darius for as long as I can. I want to reach the finishing line with Darius. I really fang bu xia (cannot let go).”