“Do you know what my nickname is?” said Edward Chan, a special dad to two autistic girls.

“I’m known as ‘Kaypoh’ (busybody),” he proudly shared over coffee with CaringSG.

Quitting his job to save his daughter

Edward was once an internal auditor, flying to various countries for auditing stints that often stretched for at least a month. But this meant that he had little time to look after his two daughters (Yan Ling, 13, and Yan Yun, 10, this year) who are both studying in Pathlight.

Several years ago, when Yan Ling was in Primary Two, she really missed her dad especially during his long overseas trips. She was also struggling with academics and felt so stuck that one day, she just decided to sleep during her entire Semestral Assessment 1 (aka mid-year examinations), hoping this would draw her dad’s attention towards her.

It worked, and Edward quit his job to take on a local role which he thought would allow him to spend more time with her. However her progress was not consistent and his new job required him to burn weekends to clear projects. 

Taking advice from the psychologist and social worker that the parent who is closer to Yan Ling should spend more time with her, Edward decided to trade his full time job to become a Private Hire Driver so he had more flexibility.

During her Primary Three school holidays until today, he invested his newfound time to build up a routine and work closely with Yan Ling on improving the gaps she struggled with. She has progressed through her Foundation years and is taking PSLE this year.

Edward also finds time to volunteer with CASPER, organising talks for special needs families and participating in initiatives with other caregiver support groups, including joining CaringSG’s CAREconnect volunteer team, earning him the nickname of ‘Kaypoh’, or someone who is a busybody.

Finding that he isn’t alone

Although it seems like Edward has always been actively volunteering, it wasn’t always this way.

When Yan Ling was first diagnosed with autism, he went through a period of denial.

“Denial will be there, it’s just how long only. Don’t blame yourself, and be frank with your family. Family support is very important,” he advised caregivers who have just learnt their dependent has special needs. He and Beverly started their special needs journey without any support group at first, relying on his mother to help send Yan Ling to EIPIC intervention during her preschool years.

In 2013, a parent whom he knew asked him if he was attending a CASPER forum. Although he had heard about CASPER, he did not apply to join until this parent mentioned the forum.

“CASPER was set up in 2011 by special needs parents who were the first few batches to attend KKH’s Signpost course. They got the support of KKH’s Department of Child Development to start this support group, provide a venue, and speakers for talks for special needs parents,” Edward said.

When he and Beverly registered and attended the forum, they realised they were not alone.

Edward greatly appreciated that the CASPER talks he attended also came with a parent Care and Share session, which he said helped him a lot especially hearing from other special needs parents how they lived their lives as caregivers.

In 2013, he was invited to join the core team, who wanted to bring more topics other than school readiness to special needs parents. Besides inviting several speakers outside KKH, CASPER connected with SG Enable in 2015. This partnership helped CASPER to link up with The Law Society of Singapore, which gave a pro bono talk on wills for caregivers.

CASPER continues to organise forums and share resources via its secret Facebook group. 

About CASPER

CASPER, a secret Facebook group, was created as a safe haven for all special needs caregivers to share information and thoughts. It works with the KKH Department of Child Development and other partners to run talks and activities for special needs children and their caregivers. 

“I wish…if I could turn back the clock, I would be more accepting of my son’s condition, and not push him and myself the way I did, with so much therapy and extreme desperation on my part, to see him improve….”

“I wish…if I could turn back the clock, one of the things I would like to do is to spend more quality time coaching and involving my son with real life daily activities rather than rushing around to fill him up with various therapy and classes.”

“I wish…if I could turn back the clock, I would start talking to more parents and be open to more options and activities for my children. Rather than keeping to myself.”

“I wish…if I could turn back the clock, I would give my son more hugs, more love, more understanding. I would make him feel that he is unconditionally accepted and that he is a blessing.”

“I wish…if I could turn back the clock, I would stop working and be with my boy.”

“I wish…if I could turn back the clock, I’d be more relaxed with my son, bringing him out to play a lot more than being cooped up at home feeling overwhelmed. I would teach him life skills instead of trying to meet academic demands, journey with other SN mums more, and pray more.  Jia you everyone!”

“I wish…if I could turn back the clock ,I would spend a lot more time teaching my daughter life skills that can lead to self care independence, like bathing, washing clothes, folding clothes, general cleaning (if her abilities can match up) rather than on academic programs like reading and writing skills which she still could not. Regardless what program your child is in, having a joyful time interacting purposefully with your child is what matters + caregiver’s self care. (My daughter has moderate-severe autism, non-verbal with a bit of hypotonicity)”

“I wish…if I could turn back the clock, I would let her start taking up household responsibilities at a much younger age at 5 years old. Let her wash her plastic cups, plates etc. I let her do her laundry using a washing machine at age 10. Believe your child can start early even though it may be messy a bit. They can do it. Just slow and not perfect.”

“I wish…if I could turn back the clock, I wish I had started earlier with XX but instead he was given so much entitlement and we were putting him into many classes, performances to occupy and engage him. In some ways it may be good but some ways may not be. It would be better if I could slow down and understand, support and coach him on a daily basis to help him achieve the necessary skills. We have lost some years but there is no looking back. This pandemic clearly helped us realise many areas to improve.”

If you could turn back the clock, what advice would you give your younger self?

“This is going to be really tough. What makes you think you all can pull this (CaringSG and project 3i) through?” The icy question from a social service sector veteran pierced my soul as I searched deep in my heart for an answer……one that I will not be ashamed to give to my maker one day.

I believe in Him who called me……who has and will make all things beautiful in His time and for His name.

I believe in my fellow caregivers……who faithfully journeys with me and many others for years, even when it was in the unearthly hours when I was at my lowest.

I believe in my fellow colleagues and allies, who like me, have entered the disability sector with a heart of passion, and despite our myriad battle scars, have stayed on and kept going on, come what may.

CaringSG will realise our vision of “One Life. One Family. One community.” because we value every caregiver and child’s life as a unique whole irrespective of our differences. We believe in supporting every family to be healthy and happy throughout life course. We believe in a united special needs community in an inclusive Singapore.

Let’s join hands and hold each other up in this caregiving journey. The birthing is difficult. We will overcome. The building is arduous. We will conquer. The harvest is plentiful. We will labour joyfully. Through blood, sweat and tears, CaringSG will arise triumphantly. Not from pride in numbers but humility in service.

10 years on, 20 years on, I know I will look back and say, “ I am so thankful I believed.”