Friends of ASD Families

05/04/2026

I can’t help feeling something is amiss while reading the ST article on “Support for caregivers expanded in Singapore”
(https://www.straitstimes.com/singapore/community/who-cares-for-caregivers-10-agencies-get-new-grant-to-expand-support-respite-care-in-singapore).

Caregiver respite is a broad term. While any form of support for caregivers should be applauded, have we really addressed the issue of how to cover the duties of those who need to step away during a critical moment?

Before we even talk about respite, we need to first talk about duties. I’m not just a full time caregiver to an autistic child with high support needs but also a mother to two other children and a wife as well as a daughter. I could still perform some of these duties when JY was in school. My availability came to a complete end the moment he graduated from school with an indefinite waiting period even just to be assessed by a day activity centre.

Two weeks ago, I felt the full weight of double caregiving when my mum fell, fractured her right foot and ended up staying with us. While I could provide a place for her to stay, I am essentially unavailable to look after her as JY requires my full attention and all the post 18 activities available to him must be accompanied by a caregiver. Caring for mum in such a situation requires all hands on deck. My sisters have to take leave from work or work from my home. My husband has to plan his work schedule such that he would be around to help when both my sisters are not available.

In a situation like this, what reliable support can I expect from existing caregiver respite services so that I can perform my duty as a daughter? Truth is, it’s cheaper and easier to find caregiving alternatives for my mum than for my son even if not immediately available. I’m thankful that I have siblings who help shoulder the responsibility of caring for mum. What about other caregivers who do not have siblings or the financial means to outsource care? What respite services are available for emergency needs?

A while ago, SG Enable was conducting a focus group discussion on respite services to better understand the support required by caregivers. I had very much wanted to join but this was conducted on a week day afternoon without any childminding support. I wondered who managed to turn up and whether the organisers realise the irony that those who couldn’t might well be those who need respite services the most?

It’s been 15 years since my dad passed away. I still feel the guilt of not being able to do more for him at his last stage of life as it coincided with the overwhelming period when JY was just diagnosed with autism. Even if I know full well that it’s not that I didn’t want to, but I simply couldn’t. I’m a full time caregiver to my autistic son with high support needs but I also have other roles I wished I could fulfill better. The disturbing fact remains. I still can’t step away so easily.

Ten agencies in Singapore receive grants to expand support and respite care for caregivers. Read more at straitstimes.com. Read more at straitstimes.com.

09/03/2026

Over the past few months since JY left school, I have been on a high alert mode whenever I bring him out, including to activities organised by Social Service Agencies. Constrained by low resources, post-18 activities often have a very low staff to participants ratio and can only operate on the basis of caregivers supervising their own children tightly. The post-18 landscape often feels like we have to fend for ourselves.

In this light, I would like to give a shoutout to Rainbow Centre, Singapore’s Young Adults Activities! (YAA!), a social activity club for youths with disabilities aged 16 and above.

Being new to YAA!, I was much relieved to see how well organised the team is. Prior to any activity, they would provide as much information as they can gather and consolidate it into a poster or even create a social story for easy reference. It really makes a difference for us to know what to expect so that we can prepare our children as best as we can.

Before meeting the staff in person, I have already sensed from the group chat that the team is very well loved by the families. The reasons became more apparent after we started to join some activitues. I have observed every one of the staff, Azmil, Yiying, Rachel and Mag being very hands on, encouraging and supportive. They really look out for everyone, especially with those having a difficult moment. During one particular episode when I needed help with JY, I was especially grateful that Azmil showed up with calmness and steady hands. Another time when JY darted out of the jumping fitness room suddenly, I realised that Yiying was also chasing along even though I was already right on his heels. I really appreciate them for being so alert and rendering support without being asked.

I also appreciate YAA! for making it easy to join. They do away with the typical enrolment process involving tedious form filling, an interview with the caregiver and intake assessment. They don’t need to see your child first before determining if he or she is suitable. The door is just open with a tacit trust in the caregivers’ decision and the fact that we will be there to support our children anyway.

Thank you YAA! for your embracing and supportive vibes! You guys make me feel that I don’t have to carry it all by myself during our times with YAA!

If anyone is keen to explore Rainbow Centre’s young adults services or consider ways to help, you may like to peek into A Good Morning with Rainbow Centre, a community open house focusing on transitioning into adulthood, featuring family-run booths, free bites, and networking with disability service providers.

Registration link: https://docs.google.com/forms/d/e/1FAIpQLScYzgriSbmwqsIBtcMGGk8ooVBcTXDKc45DqmeXpxccd9O1hA/viewfor

04/03/2026

Last Tuesday we celebrated Chel Sie’s birthday. Our cute little girl has turned 23 and yet she is our forever baby. Many memories, sweet and sad have been formed over the past 22 years. We learned a lot and have also grown to be more united and stronger as a family. Along the journey, we are sometimes blessed with acts of kindness when people realised Chel Sie’s condition.

This year we celebrated her birthday at Surrey Hills Grocer- VivoCity, a restaurant with an animal theme. I would like to commend the restaurant’s staff for their kind service. As I had told them that Chel Sie loves animals, they allocated us a table close to the kangaroo. After our food was served, Chel Sie started to act up and tried to flip the food. I then asked if we could change to a bigger table so that she could have more space. The waitress graciously offered to let Chel Sie sit alone at the next table so that we could have our dinner without worrying about her behaviour. To our surprise, they also offered Chel Sie a slice of free cake which was usually only offered to members. Instead of seeing us as trouble, their understanding enabled us to have a nice birthday celebration with Chel Sie afterall.

Another highlight of Chel Sie’s birthday is being remembered by an unlikely friend. This angel is actually a friend of Chel Sie’s sister and has been giving a birthday present to Chel Sie every year without fail. Usually people with special needs like Chel Sie hardly have any real friends. To be remembered by someone year after year with a gift means so much. We are really touched by manner she extends her love to Chel Sie.

We appreciate and cherish all these blessings. Chel Sie is a warrior since birth and I hope she will continue to be one for many years to come.

Contributed by Fui Lee, mum of Chel Sie who has autism and a chromosomal disorder

15/02/2026

Our son, WL, had quite an adventure yesterday. As we were coming home from elsewhere to bring him out, I called him to get ready by changing his clothes first. But when we reached home 30 minutes later, we found both him and his bag pack gone! I quickly checked his location using “find my iPhone” and was stunned to see that he was on the move along Bedok Reservoir Road!

WL must have misinterpreted my instruction and left home after receiving my call. As we had only moved to this area recently, I was both surprised and impressed by his ability to walk half a kilometre through many blocks from our house to reach the bus stop along Bedok Reservoir Road.

We called him immediately to ask what bus number he had boarded but he replied a random bus number from our old house. Fortunately WL had turned on the speaker phone during our conversation and a gentleman near him overheard our conversation and realised that WL was lost. He took over the phone to talk to us and his act of kindness saved the day!

We are really grateful to this young man. He alighted from the bus with WL at the next bus stop which was Kaki Bukit and sent us the location and a picture of the bus stop. That was already 11 bus stops away from the place WL had boarded. He also stayed with WL and waited with him until we arrived. We rushed over by private hire and got WL back smoothly, all because one young man chose to intervene with kindness.

Shared by Wong whose 18-year-old son WL is autistic.

04/02/2026

This morning I brought JY to Punggol Regional Library, which has become one of our usual hangouts. We already have some sort of routine and JY is getting better with spending more time at the library. However, for unknown reasons, he started making loud noises when he was in the toilet and became dysregulated soon after. In the past I would have made a quick exit when he’s in such a state but being familiar with Punggol Library, I decided we could seek refuge at the calm room. I approached a library personnel who quickly tapped in for us.

Once inside, JY found a bubble pop fidget toy to sooth himself while lying down with the bean bag for some proprioceptive pressure and gradually regained his composure after more than 30 minutes. Such a safe space is equally important for the caregiver. Being there allowed me time and space to think. Part of me wanted to go home quickly after this foiled outing but the safe space made me brave. Knowing how important it was for JY to complete our library routine, I gently went through the plan and expectations with him. JY would walk calmly without shrieking while we find some books to borrow and then go somewhere else to get lunch. JY tried his best to follow through although he still made some noises. We managed the trip alright after all.

Having the calm room and the supportive vibes of the staff at Punggol Library made a real difference. Thank you NLB Singapore for all the strides you have taken towards inclusion such that even with an incident today, we could stay on instead of flee.

PS: Check out the comments for other places with a calm room in Singapore and help add to the list if you know of others.

05/01/2026

This morning, we embraced the first Monday of the year and a new beginning by playing basketball at One Punggol Hub. Although we are not enrolled clients of SPD Enabling Service Hub (ESH) and could not join several activities, we could still register for a handful others including the sports session on Monday mornings.

While the enrolled clients usually have a coached basketball programme, we could share the other section of the court to play basketball, badminton or boccia by ourselves. I am thankful for this wonderful safe space as the partially sheltered court is fully enclosed and the 2 to 3 ESH staff onsite provided a reassuring presence. Even though the session was not facilitated and JY had only me to play with today, we had a great workout.

Thank you for creating such safe opportunities for us to access community facilities.

Check them out if you would like to join their activities or volunteer your time to support their work to offer community support for persons with disabilities and their caregivers closer to their homes -
https://linktr.ee/eshpunggol

31/12/2025

Before 2025 comes to a close, let’s take a moment to give ourselves a pat on the shoulder for doing the best that we can.

As we persevere joyously in the new year,

May we be filled with loving kindness
May we be well
May we know peace and ease
May we be happy

I wish you a year full of blessings!

29/12/2025

When it comes to deciding what activities to add into JY’s new post-18 routine, my guiding principle is finding a good balance between what he finds meaningful and what nourishes me.

Bringing JY to the library frequently is one of the things I have been working towards for years. It all started with cultivating in him a love for books which had not come naturally. It took many years of reading to him regularly before books became a part of his daily life. Reading to him has become an enjoyable activity for both of us and also an easily transferable activity to anyone who’s willing to spend time with him. We have to replenish the books every week but most of the time it’s a very quick trip to the library as JY cannot stay long without moving around or making some noises. I am unable to slowly search or browse the shelves but have to randomly pick up whatever books within easy reach while keeping an eye on him.

This morning, we found our sweet spot at Ang Mo Kio library where there’s a programme room with nobody around. I gave JY a visual card “wait for Mama” and left some books there for him to leaf through while I selected some books from the shelves outside the room where he’s still within my sight. The room provided some sort of boundary for him not to stray unlike at other libraries where I could only try to make him wait at a seat. Somehow, JY was very comfortable in this space and I decided to stretch our visit by reading a book to him there. We ended up reading three books before we checked out a pile of books unhurriedly to bring home.

Before we left, I needed to use the washroom and instructed JY to wait for me at the bench nearby. To my shock, he was gone when I came out, despite his bag and the wait card still on the bench! I had a quick look around to see where he might have gone, fearing that he had left the library. I was so grateful when another library user made eye contact with me and pointed at the programme room. She must have noticed that JY was not a typical youth. Indeed JY was back there chilling at the same spot to my great relief! All’s well that ends well! I even managed to pick up a book for myself as the adult section is on the same floor.

Today was the first time JY had lingered so long in a library and even a little unwilling to leave. This is where the charm of such standalone old libraries lies. There is no distraction like shops or events on the way there. It’s more peaceful with fewer people and truly an oasis of calm unlike the revamped libraries inside busy malls and community hubs. Even as I mourn the impending closure of such old libraries one after another, we will make the best out of it while we can. Thank you Ang Mo Kio library for being an especially safe and pleasant place for us. We will definitely be back again while you are still around!

https://www.channelnewsasia.com/singapore/ang-mo-kio-public-library-move-amk-hub-2026-5216131 😢
National Library Board, Singapore

23/12/2025

And just like that, JY turned 18. This year also marked the end of his school journey. It was hard to bid farewell as school had been like a second home to JY. It was also my only regular respite which had enabled me to organise various activities and advocate for the community all these years. Thank you Rainbow Centre, Singapore for being an amazing part of our journey! It has been a really good run.

We have come full circle - he’s back in my care full-time while everything out there requires an assessment and comes with a waiting list. Just like at the start of our autism journey, we will be pretty much on our own again.

The morning after the graduation ceremony, I found JY crying silently in his bed. Perhaps he knew that a chapter of his life had come to end. I decided not to say anything but just stayed beside him to wipe his tears away. And then we looked deeply into each other’s eyes and we smiled. I will never forget this moment of connection and epiphany. While changes are an inevitable part of life and there are currently many things beyond our control, the one constant I can offer him for as long as I am alive and well is this - “Darling, I am here for you.” The road ahead looks uncertain but we have done this before and we can do it again.

Happy Continuation Day my beloved JY! May you be well and happy always and grow from strength to strength 🙏

"The day you call your birthday is really a day to remember your continuation. Every day you transform. Some part of you is being born and some part is dying." - Thich Nhat Hanh