Taking care of a child isn’t a walk in the park. Just ask any parent out there who might be familiar with sleep deprivation, kids with boundless energy and the constant worry of keeping them safe. Yet, many believe the joys and intangible rewards of parenthood far outweigh the challenges they face.
And child-rearing gets trickier when your offspring faces difficulties navigating daily life, often requiring you to play an even bigger part in their lives – sometimes, even 24/7. Just ask Madam Esah Lim, who has been the sole caregiver of her 31-year-old son with autism, Ivan, ever since her husband passed from cancer over 20+ years ago. She also has two daughters aged 35 and 33.
While we can hardly imagine the challenges she’s faced over decades of caring for her son, the lively lady remains positive and practical, sharing with us her inspirational journey.
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Esah Lim, 65, has been taking care of Ivan on her own since he was in primary school, and she admits it has been tough due to the need for around-the-clock care. Ivan has Autism Spectrum Disorder, which affects his social behaviour, how he relates to other and everyday activities.
For instance, Esah has to help Ivan with daily tasks many of us don’t spare a second thinking about – such as going to the toilet, bathing or brushing teeth.
“To be honest, my days are not divided into morning, afternoon and evening, it’s all the same to me since I need to help him with daily tasks most of the time.”
This takes a toll on her physically. But the hardest part, according to Esah, is mental – keeping a watchful eye so Ivan doesn’t get into any accidents.
For example, Ivan often likes to open cupboards and the fridge door in the kitchen – but knocks into them. He often follows his mum around the house, but still slams into objects. “It pains my heart when that happens,” she sighs. “Sometimes, he hits his own head, too.”
That fear she has of Ivan getting injured gets even more pronounced in public spaces – he has gotten into car accidents before, and has even landed himself on the MRT tracks. She recalls, “He was hyperactive when he was younger, and loved to run everywhere when we went out. One time, I realised he had run across a road here in Pioneer!”
“It was so terrifying, with plenty of heavy vehicles, and I chased after him. He managed to make it across in one piece, but I fell and scraped myself.”
And in August 2016, things took a turn for the worse. Ivan was having difficulty seeing. So, Esah brought him to a doctor who diagnosed that he was experiencing retinal detachment.
Progressively, he grew blind in his right eye, and his left eye’s vision has become blurry. Still, Esah tries to stay positive. “He has become a lot less hyper, so he doesn’t run about so much outdoors.”
That’s fortunate, she says, since Ivan loves to take walks especially to parks or playgrounds.
With most of her hours dedicated to Ivan, Esah declares she doesn’t really have many hobbies. Rest, in fact, is a precious commodity. “I love it when Ivan is watching TV – so I can take a temporary break!”
But, in the last two years, she has eked out a little more time for herself. Ivan has begun attending a day activity centre at SPD (formerly Society for the Physically Disabled) every Tuesday and Thursday. He goes there in the morning all the way till late noon, so Esah takes the opportunity to get some marketing done, meet friends occasionally and even exercise.
“I go for this $5 charity class near my place which helps me to stretch – it’s called Gym Tonic. And I really enjoy myself as it helps me to strengthen my legs.”
She also reports that Ivan’s time at SPD has helped him improve greatly. Like listening to the training officers and therapists, and sitting still for longer periods of time – from 5 to even 20 minutes.
When we were at SPD ourselves checking out Ivan’s routine, we found that caregiving was no walk in the park – although they literally did that at a quiet park behind the SPD compound.
The small staff:client ratio means greater attention to each person. And, each person progresses on their own terms with an individualised care plan. We also saw Ivan and his fellow centre mates engage in sensory activities, as well as take part in exercise like runs or obstacle courses.
When asked if she’s grateful to the organisation for its support, Esah’s relief is almost palpable. She expresses her gratitude to SPD for giving Ivan a new environment, a new start, and new learnings. Plus, a new chapter for her. “Even though he’s just there for two days, that gives me precious time for self-care,” she says.
She has also learnt how not to be afraid to ask for help, as there are many others in similar situations.
“It’s a huge load off your chest to open up and share your challenges – and even get tips. In the past, my weekly sharing with a support group at IMH helped me to not spiral into depression.”
When asked what is her greatest concern when it comes to Ivan, the usually animated Esah grows somber.
“Ivan is my son, and I have a responsibility to take care of him. What worries me is what is going to happen to him when I’m no longer around. Who will take care of him? My elder daughter? She has her own family and the younger one is also busy with work. It won’t be fair.”
When asked if Ivan staying at an external organisation was a possibility, Esah hesitates. She mentions that Ivan used to cause a ruckus by knocking things down at Rainbow Centre in his school days, and it might be hard for the home’s staff to understand his ways, especially at first.
What about a long run caregiver? She considers this, pausing, but mumbles on the possible high costs of a nurse or professional taking care of Ivan in the long-run.
Besides, she admits, she prefers to care for him as long as she could, as it’s more about “the heart.” Truly, a mother’s love knows no bounds.
Esah’s predicament is much more common than you think. According to an estimate by MSF, there are about 32,000 people with disabilities aged 15 – 64 years old in Singapore. This includes persons with physical, sensory, intellectual and developmental impairments, some of whom require extensive caregiving.
Yet, the stigma lingers. Esah has received derogatory comments (“no proper upbringing!”) when Ivan makes noises in public with her, suggesting that Singapore still has a long way to go in making our society more inclusive and aware.
Some folks might not be aware, too, that autism presents itself uniquely and to various degrees, which requires different levels of support. For instance, some “high-functioning” autistic people could need support finding a suitable job, while others want to improve speech or physical skills.
With such a wide range of support needed and a common gap in understanding of people with disabilities, being a caregiver that ticks all the checkboxes is not an easy job.
Caregiver or not, you can easily take steps towards helping vulnerable groups like Ivan in our midst. “Other people will do it lah” might be your first thought, but you can make a whole lot of difference by speaking up or helping those around you who need it.
Whether it’s on how to make workplaces better for people with disabilities, or supporting folks like Madam Esah in informal ways, your ideas are more than welcome on the Singapore Together, Emerging Stronger Conversations platform.
One of the silver linings things birthed during the pandemic, the platform showcases over 16,900 Singaporeans’ aspirations for a better post-Covid Singapore.
It’s not just introspection, either. There’s also a commitment towards concrete action and initiatives in the real world.
A new Alliance for Action (AfA) for caregivers of persons with disabilities, as part of the Singapore Together movement where the government partners with Singaporeans, will be formed by the National Council of Social Service (NCSS), SG Enable and community partners; this AfA aims to co-create solutions on pressing issues faced by caregivers of persons with disabilities. For a start, this AfA will focus on developing solutions related to self-care and mutual support.
AfAs are not limited to the disabilities sphere – you can share and find opportunities to help with a myriad of issues. From work-life balance to sustainability to mental health, you are bound to find a cause close to your heart.
And involvement can be as big or small as you like. For example, if you’re moved by Esah’s story, you can read about similar stories, share ideas, get funding, seek help for someone you know or even volunteer. The world’s your oyster.
Stepping outside your everyday bubble and sharing thoughts on how you can make society better can make all the difference. When asked why she was willing to share her story openly in the first place, Madam Esah says “I wanted to help others in society know more about autism so that caregivers can get the support and understanding they need.”
Truly, you never know what conversations you spark could make the world a better place, one step at a time.
Note: Check out resources for persons with disabilities and caregivers in this Enabling Guide.
This post was brought to you by MCCY.
Photography by John Low.
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