World Autism Awareness Day (WAAD) falls on April 2. This year, the WAAD theme for Autism Network Singapore (ANS), an alliance of five social service agencies, is “See Me in a Different Light”, highlighting the love and support in the lives of autistic people, their caregivers and those working with them.
When her twin daughters were born, Jacqueline Yeo was like any typical mum with big dreams, ideal primary schools shortlisted and ready.
But just two-and-a-half years later, she’d find herself faced with the decision of sending her daughters, Cheryl and Eunice, to a special education school.
And as the twins turn 20 this year, Jacqueline’s plans have shifted to preparing them for residential facilities and life with other caregivers in the event of her and her husband’s death.
The twins are autistic, and the 45-year-old is acutely aware that she won’t be around forever.
And even with her hopes and dreams for Cheryl and Eunice taking a different turn, her parenting philosophy remains the same.
“Along the journey we have a lot of stressful moments and things that are unexpected, but so long we learn to cope with it in small steps, it’s actually not that bad… So we make adjustments along the way. “
Labelled kiasu for raising her concerns
The mum of three — she also has a 13-year-old neurotypical daughter — readily admits that she wasn’t always as well-adjusted. It took her years to both receive a diagnosis for the twins and come to terms with it, she shares.
And back then, even getting her family and doctors to take her concerns seriously was a struggle.
The IT support professional recalls noticing when the girls were about one year old that they weren’t meeting developmental milestones such as babbling or making different sounds to express their feelings. But after raising her observations with a doctor, she was shot down.
“What the doctor told me is, ‘Hey, don’t be so kan cheong (nervous),'” says Jacqueline.
After a second doctor dismissed her concerns, her family became convinced that she was simply being paranoid.
“So I got ‘slapped’ by two doctors. My family was even more certain that I was kiasu.”
It was the third doctor who finally agreed with Jacqueline that the girls were developmentally delayed. But even then, it wasn’t a moment of vindication for her.
“I still remember this because I felt so wronged. The doctor said, ‘Mummy, your child is already two-and-a-half years old and they are lagging behind in development by so much. Are you not concerned?'”
Wanting the twins to get the help they needed early on, she wasted no time in enrolling them in Rainbow Centre, a special education school. After further assessments, both girls were deemed autistic, Jacqueline says.
‘One plus one doesn’t equate to two’
Her first few years grappling with the diagnosis were overwhelming.
Desperate to help the twins, she would take any and every piece of advice she received to heart. And at the same time, she was also in denial that they “would be like that forever”.
“I got very angry at everybody. And very sad,” Jacqueline says.
To add to that, she had to account for the fact that two of her kids were autistic and any shifts in the family’s routines to accommodate one child would invariably affect the other.
“We will face different issues with both of them. One plus one doesn’t equate to two – it’s much more than two,” Jacqueline explains.
Rather than paying heed to every single piece of advice that came her way, she says setting boundaries and focusing on building her kids up her own way, a step at a time, made all the difference.
“Because I’m doing that, I can see the progress. When I see the progress, I chart it inside my mind and inside my heart.”
Today, older twin Cheryl attends Saint Andrew’s Autism Centre’s Day Activity Centre (DAC) and is able to communicate in single words. Younger twin Eunice is not ready for DAC yet, says Jacqueline, and is still not able to demonstrate to her caregivers what she wants.
Nevertheless, the sisters’ days are packed full of activities, painstakingly planned and arranged by Jacqueline.
Each week, they attend inclusive running club Running Hour, rock climbing and zumba. And on the weekends, they go hiking. Each sister also has individual activities planned from time to time, such as Cheryl’s dance classes and Eunice’s social gatherings arranged by Rainbow Centre’s Connected Communities Services.
These outings are an opportunity for the girls to interact with others and learn, says Jacqueline, adding that she sees each completed activity as an achievement.
“I don’t have big moments or big achievements that my girls have done. But all these small moments, I cherish it very much.”
Hope for acceptance
With both Cheryl and Eunice on the cusp of adulthood, Jacqueline says one of her biggest long-term goals is ensuring a smooth transition into living independently once she and her husband are no longer around.
“What if one day I dropped dead? Because nowadays, you never know — accident or tomorrow, which will come first?”
With that in mind, she has been working to build up the twins’ confidence and communication skills, she says, and is prepared to enrol Cheryl in a home when she’s older. Eunice, on the other hand, will likely require a dedicated caregiver.
She’s also taken great pains to emphasise to her youngest daughter that caring for her sisters isn’t an obligation.
“The first thing I told her since she is very young — as young as seven years old — is that you do not need to take care of your sister. It’s not compulsory,” she adds.
Another dream of Jacqueline’s is that autistic people will be accepted into the community as they are.
“Many, many of them would rather hide from the public because they felt that they will create inconvenience for the rest,” she laments. “But what I wish is that people with autism like my children, they can go to any places that they’re entitled to.”
This article was first published on AsiaOne and republished on theAsianparent with permission.
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