By Tham Cheng-E
Nothing could prepare my wife and I for the birth of our second son, Amos. We knew from pre-natal scans that Amos was special – he was diagnosed with Down syndrome. Putting aside our dreams, my wife and I prepared ourselves for the worst and found the resolve to carry the pregnancy to term, by the grace of God. Yet no amount of mental preparation would shield us from the reality that was to come.
Amos arrived in the wee hours of morning, popping into our world after an intense 15-minute labour with the umbilical cord around his neck; blue and silent until the heroic band of medical professionals pumped breath back into him. With the relief also came the fierce reckoning that the child would be a special one.
When the truth of his diagnosis sank in, I despaired. Over the next few days, the reality of living with a Down syndrome child burrowed deep. I wasn’t ready for it. I did not possess the kind of patience or compassion or love needed to do this. How did it happen? Not even medical science offered a clue. I was embittered, thinking I never signed up for this, and unknowingly neglected that tiny life next to me, swaddled and blissfully asleep in his cot.
Raising Amos was a long, challenging journey
Amos has come a long way since that fateful day. He turned 11 years old this year and is now armed with a fierce desire for independence. He demands to pick out his attire and fold his laundry for the forty cents Mummy pays him for each “job”. He counts the coins in his piggy bank and buy snacks with them. However, it was a slow, hard training to get to where we are today.
Through the years, we learnt that progress was a delicate combination of nurturing both the physiological development of his mind and body, and the dynamics of his environment. Just 2 years earlier Amos wouldn’t have been able to do this, despite our efforts. We had to work at his pace, and when coupled with factors such as the growth of his prefrontal cortex, the learning just clicked.
Shortly after Amos’s birth, and with the excellent post-natal support we received, we sprinted to get Amos enrolled in the early intervention programme (EIPIC) at Rainbow Centre.
Amos began his learning journey at 1, against a spate of health issues that included a hole in his heart, aspiration problems where he swallowed fluid into his lungs, and hypotonia (or weak muscles) which made him floppy as a rag doll.
Apart from being tube-fed for the first 3 years of his life, hypotonia impaired his learning. He belly-crawled for most of his toddler years and required aids to move around as he transited to walking. For Amos, climbing stairs was like scaling Mount Everest!
But thanks to a combination of astute, incisive teaching from the dedicated folks at Rainbow Centre, reinforcing the learning at home and Amos’s grit and determination, the tough little guy weaned off his feeding tube and walking aids just in time for nursery, one year later than his neurotypical peers.
And by God’s grace, in the 6 months between weaning Amos off the feeding tube and starting his preschool journey at St. James’ Church Kindergarten (SJCK), we managed to get him started on drinking from cups and straws and eating solid foods like biscuits and corn snacks.
Amos overcame multiple challenges in school
Thankfully, Amos also had the company of his older brother, who was in K1 at SJCK when he started nursery. Both boys took the same school bus, but the disparity between them couldn’t be wider.
Amos was a tiny child. It was easy to have someone carry him when he gave up walking. But we parents and teachers realised that we needed to encourage and empower him to allow him to fully reach his potential and be just like everyone else.
When it came to climbing stairs, we continued to cheer him on to take the handrails and fight the fatigue one flight at a time. It was tough and tedious work every day. The preschool didn’t need this to do this. Yet we all knew that it was a very conspicuous cost of being inclusive.
Mealtimes weren’t spared. Amos’ weak oral muscles meant that his food had to be minced—a regime meant for toddlers. Due to his lack of verbal skills, Amos expressed his displeasure by executing the classic flop-and-drop.
Despite understanding what was said to him, he was often annoyed at his inability to make himself understood. Sometimes he would sign to express himself, but that required the teachers pick up signing too. We made signing cards for the teachers and fretted over the trouble that we put them through. After all, we heard many accounts of children with Down syndrome being rejected by preschools.
We prepared for the worst; the dreaded meeting with the teachers, the principal, the formal notice of withdrawal.
But none of those came. Whenever the teacher met us after school it was to tell us about Amos’ day and how we could help him reinforce the skills he learnt at home, which we did to the best of our abilities. Coupled with the teachers’ dedication, Amos overcame one obstacle after another.
We didn’t believe it when the bus aunty told us one day that Amos had been walking to class on his own!
Our faith became sight when we saw him perform the feat, getting off the bus and waddling on his stubby legs a little behind his peers. But he was moving all right, steadily following the path that he knew well by then, and we watched him all the way.
Amos found support, acceptance and love in SJCK
While the team at Rainbow Centre catered to developing specific skillsets, the experience at SJCK was paramount in pushing developmental boundaries, particularly in social interaction and speech.
It didn’t transform Amos into an orator, but it certainly developed his interest in expressing himself and surprisingly—in reading. Amos has an inherent interest in phonics, and SJCK’s weekly spelling exercises only accentuated it. He read and wrote in school and at home and before long his spelling results were on par with his peers.
We couldn’t have been more thankful for the amazing experience Amos had in those early days at SJCK. His neurotypical peers helped Amos to emulate positively in deeds and speech and provided much-needed mental stimulation at play. Despite his antics and tantrums, we didn’t feel judged through the preschool journey.
We found support in teachers, pupils and parents, even as simply as giving Amos space when he acted up or making effort to include him in activities. In turn, the kids in class learned about exercising patience and tolerance because Amos needed more time to learn the things that came easily to others.
More importantly, they were imbued values of acceptance and taught that we are all loved in God’s eyes despite our differences.
Building a more inclusive society starts from young
If we want to craft a better, more inclusive world, it must begin with teaching children the enduring values of empathy and love. These values remind us of the qualities that make us human.
Not only was SJCK willing to accept Amos, they embraced him. And at the end, it was the warmth and dedication of the teachers and a collaborative parent-teacher relationship that made all the difference.
As we leave those days behind and embark on a new journey in Amos’ life, I have come to appreciate that what matters isn’t getting the life we’d sign up for. Rather, it is our capacity to embrace the vagaries of life, bitter or sweet, and make the best out of them.
What kind of life will Amos have in future? We might never find out. But this I know: that how we feel about him and what we’d do for him mattered more to him than anything else in the world.
Tham Cheng-E is the author of three novels, Surrogate Protocol (2017), Band Eight (2018) and Claiming Susan Chin (2023), all of which were selected for the Epigram Books Fiction Prize. He is a father to two boys, the younger of whom has Down syndrome. He also writes about Down syndrome and parenting on his family blog Thumbprints.
