In early May, I was invited by the St Andrew’s Autism Centre (SAAC) to share my experience as a caregiver to my son, Lucas, who’s autistic. They were holding a Donor Appreciation Event and thought that it would be nice for the donors to hear from a caregiver.
Lucas has benefited immensely from having a place at SAAC, so of course I agreed.
I shared on LinkedIn, how I found myself unprepared for how difficult it was for me to write my speaking notes – the subject was too personal and I was highly invested in the topic. And despite the fact that I’ve lived with autism for over a quarter of a century, talking about it and about Lucas especially, has the amazing ability to unclog my tear ducts. I ‘warned’ the audience not to panic if that happened.
I was composed throughout, right up till the very end when I wanted to introduce Lucas to the room.
Full transcript of my sharing below:
“Thank you for the privilege to be here this afternoon.
I’m Sharon Lee and my son Lucas is a client with the Day Activity Centre here at its Siglap grounds.
Lucas turns 28 this year. Hard to tell sometimes because even though he’s as tall as an average man and has some facial hair to boast of, his overall demeanour and actions seem more congruent to an innocent yet somewhat cheeky child.
Lucas was officially diagnosed just before he turned 3. At that time (1999) – much less was known about autism. Worse than that, there were much fewer services provided. I remember taking him to speech and occupational therapy sessions at KKWCH – at best we got a monthly appointment. Even private therapists were hard to find and harder to schedule a session. At that point, the focus was all about early intervention, and like every parent, I had the hope (and misconception) that early intervention will somehow miraculously “cure” Lucas.
As he approached the age when most kids start primary school, he managed to get a place at Rainbow Centre where he’d spent his early ‘school years’. By then, the practical realist in me knew that Lucas would never be accepted in a mainstream school – he will always require much support and close supervision.
That’s when I heard of St Andrew’s and I went to one of their open houses which was held at Changi General Hospital where they were operating out of at that time.
I’ll admit, it bothered me a little – that if my son got a place with St Andrew’s, he’d be going to a hospital every day. As it was then and even now, a lot of stigma around disabilities and special needs. But what truly attracted me was that they catered to older kids – because every other centre at that point only provided early intervention up till the age of 12 – and that there were plans in place to cater to adults with autism. I wanted Lucas here and I put him on the waiting list immediately.
And for a long time, he was on that waiting list. It came to a stage when I actually quit my job, fully prepared that I might have to home school him once he graduated from the Rainbow Centre. Of course, I should have had more faith in God’s plans and provisions for Lucas and me. There’s an old Yiddish saying which loosely translates to When Man Plans, God Laughs. Two weeks into unemployment, Lucas started Day One at St Andrew’s Autism School at its temporary home at Guillemard Road.
That was in July 2009 – 10 years after Lucas was first diagnosed, and in a couple of months time, he would have been part of the St Andrew’s family for 15 years.
Fifteen years may sound like a long time, but to many parents like me, it’s nothing compared to a lifetime. Because that’s exactly what it is – a lifetime of living with autism.
And if you’re a single parent like me, with no other children – the fear and worry is – what happens to Lucas beyond my lifetime.
People have come to me and said “God only entrusts people like Lucas to special and capable parents.” My reply is that I don’t need to be so special – I’d be happy for Lucas and I to be ordinary.
But scripture also reminds us in 1 Corinthians 10:13: God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it.
And through St Andrew’s He has given Lucas a safe space here to grow, learn and improve. From the school, he transitioned to the Day Activity Centre when he turned 18. And perhaps one day he might be a resident at the Adult Home.
Through St Andrew’s, He has given all caregivers hope – for our kid’s future.
Sadly, the reality is that not every person with autism will have access to support and services at various stages of their lives. Currently, SAAC serves about 450 persons with autism. Based on global estimates that autism affect 1% of population, that would mean we have about 50,000 persons with autism in Singapore. 450 is just 1% of that 1%. Or 0.001%
As a caregiver, what do we need?
Services like what SAAC provides and your generous and ongoing financial support helps SAAC keep their lights on and continue to support 450 and more persons with autism.
If you are unable to directly contribute, then any support in fundraising helps cover that gap and consider volunteering. Volunteering is a wonderful way to understand and appreciate the uniqueness of each person with autism.
If you run companies or teams, gather your people and get involved in volunteering activities with us. If you want to understand about hiring or working with people with autism, speak to us too.
Even though Lucas will never be gainfully employed, I am personally interested to accelerate this area and will be happy to speak with you further on it.
And beyond all that, as you go about your day to day, if you encounter any person with autism or any disability for that matter, my wish and hope is that you not judge, offer help if you can and it appears to be needed, and just welcome them into your space and community.
As a parent, I’ve had many encounters with all kinds of different reactions from strangers when Lucas and I are out and about. We’ve been met with kindness, we’ve seen looks of pity and puzzlement, and we’ve also come across impatience, rudeness and mean remarks.
In all encounters, it affects me and not Lucas. The young man still goes about in his merry way, oblivious to the action around him.
The tears and fears remind me that there’s still much to be done – it’s a massive work in progress.
No one entity can operate effectively on its own. The eco-system comprises of our government, service providers like SAAC and their staff, corporate and individual donors and supporters like yourselves, our children and caregivers and parents like myself. And my personal thanks to you for being a part of that ecosystem.
We are only as strong as our weakest link – and that should be the people we support through their lifetime.
Together I know we can push forward the agenda in building a caring, safe and welcoming community where our kids are loved and treasured as individuals.
This is Lucas. He’s a client here at St Andrew’s Autism Centre. He tries to manipulate his coaches sometimes. He annoys me often when he plays the same Christmas tunes all year round but he can do no wrong in his grandparents’ eyes. He is my son whom I love and treasure immensely, and the reason I’m standing here today. Thank you for listening.”
(Photo courtesy of St Andrew’s Autism Centre)