How an autistic boy in a wheelchair “shone as a light to the world”
by Juleen Shaw // May 14, 2020, 2:22 am
Isaac (front left) touched friends and strangers alike with his ability to find reason to laugh and be joyful despite his many challenges. This photo, with his sister Jane, dad Joshua, mum Grace and brother Shalom, was taken on Isaac's final birthday celebration when he turned 28. All photos courtesy of the Lim family.
Accomplishments. Accolades. Admiration.
He had it all.
A talented artist, his mixed media artwork, Seed of Peace, hangs on the wall of Prime Minister Lee Hsien Loong’s office. He had painted it at the age of 14.
An enthusiastic horse rider, swimmer and sailor, his competition medals attest to a life fully lived.
Friends and family – some who knew him well, others who had met him just once or twice – speak of him as “a great source of wisdom” and a “joy, hope and inspiration”.
They are descriptions of a son that swell a mother’s heart.
More so because Isaac Lim was not a robust fellow with impressive connections, a string of academic achievements or a high-flying career to his name.
Isaac was an autistic boy in a wheelchair.
A beautiful baby, a devastating diagnosis
When Isaac, an infant with an angelic face and beautiful eyes, was three days old, he was diagnosed with Duchenne muscular dystrophy (DMD).
A genetic disorder where muscles begin normally but progressively waste away, DMD affects one in every 3,500 males worldwide and has no known cure.
Isaac’s sister, Jane, two years older, had escaped the genetic condition. So Isaac’s DMD diagnosis came as a blow.
His parents Grace, then an English language teacher at NUS, and Joshua, a general practitioner, understood what the diagnosis meant.
They would eventually have to watch their son go from being a sporty, active child, to a frail teenager, confined to a wheelchair for life.
What made the diagnosis doubly painful was that initial results had been negative. The paediatrician had told them in the morning that “all’s well”.
They would watch their son go from being an active child to a frail teenager in a wheelchair.
“We were so happy,” Grace recalls.
That afternoon, however, they received different test results. It was crushing.
In the midst of her pain, Grace remembers receiving this word: “Like a sparrow in its flitting, like a swallow in its flying, a curse that is causeless does not alight.” (Proverbs 26:2)
What did it mean? She couldn’t fathom it at the time, but it gave her comfort that the God of mercy would take care of her son.
Indeed as young Isaac grew into an adventurous boy with an impish smile, life was exuberant.
“Isaac was interested in everything! He would climb up to the roof of my car and sit there eating ice-cream. He loved going on walks and bringing home flowers and twigs and leaves. He’d go to our garden and pick up a caterpillar – you know, the black, itchy kind – and he would cheekily come and give it to me, laughing at my horror!” Grace, now 61, relates to Salt&Light with a chuckle.
But at two years, when Isaac’s speech development was “not on track”, the family started Isaac on speech therapy and enrolled him at the Horizon School for Special Education (now closed), where he would benefit from learning specialists.
“He was a quick learner and a smart chap,” Grace smiles. “He loved to play games on the computer and, at six years old, would churn up dictionaries and read the words to us. That’s how we all learnt words like ‘zucchini’!”
In the midst of their anguish, God had another word for Grace: Philippians 2:15.
But Isaac’s muscular dystrophy quickly asserted itself. He started intense physiotherapy which, though strenuous, he did without complaint. “He never threw tantrums.”
There was to be more heartache.
When Isaac was six, Grace and Joshua accompanied him to Perth, where he was put through the rigours of a psychological assessment and a speech pathological test.
The results: Isaac was high-functioning autistic.
“I guess we had our suspicions but we were just hoping it was not autism because we knew that if it’s autism, it’s going to be really tough,” Grace says.
Isaac, who related well with people, “didn’t look or feel in the least like a child with autism. We couldn’t believe it – there must be some mistake somewhere. It was heartbreaking.”
In the midst of their anguish, God had another word for Grace: Philippians 2:15.
God told Grace He was describing Isaac in the verse – “blameless and pure, a child of God without fault, in the midst of a crooked and perverse generation, who would shine as a light in the world”.
This was a new picture of Isaac, one that filled Grace with a mother’s determination to equip him with all he needed to live the luminous life God had planned for him.
His name is Shalom
When Isaac was three, Grace became pregnant with another son.
She was not surprised. A whole year before he was conceived, the Holy Spirit had quickened her heart as she was reading Zechariah 8:12. He told her: This seed shall be your peace, your shalom. “Seed” in this instance referred to a boy.
There were other confirmations, and Grace had surrendered. “Okay, God. If I have another child, I know it’s going to be a boy, and we shall name him Shalom.”
But when the baby was conceived, the family agonised over whether they should keep the pregnancy, and waited with bated breath for the test results on whether their baby had the DMD gene.
“How could this happen after the genetic testing? There was so much wrestling with God.”
After what seemed like an interminable wait, prenatal tests showed that the three-month old foetus did not have DMD. The family was overjoyed.
So baby Shalom was born.
But at 28 weeks, their world came crashing. Shalom not only had to have an emergency kidney surgery, a blood test during the procedure revealed that, due to a “crossover gene”, Shalom did indeed have DMD like his brother.
“My heart just broke,” Grace says. “How could this happen after the genetic testing and all the trouble we took to make sure everything was fine? There was so much wrestling with God.”
It was only later that she realised that what had happened was a miracle. Shalom was a miracle baby.
If the prenatal DMD test had been positive, they would have agonised over whether they should terminate the pregnancy. But because the tests were negative, Shalom was born.
And there have never been any regrets.
“I knew that somehow God would carry us through; He had even named this little boy a year ago!” Grace says.
Tom and Jerry
So the three children brought joy to the household as only children can.
Gentle, smiling Isaac, who could not engage fully in conversation, still managed to endear himself to all and sundry, including his teachers, family friends and strangers on the street.
“Kids loved Isaac, often treating him like a little brother,” smiles Grace. “He would allow them to feed him and fuss over him, giggling and chuckling away. He was sometimes thoughtful and pensive. But when he smiled, his eyes were very bright and it was like the best gift ever!”
When he did speak, he was polite: “Some more soup?” “More meat please?” He loved to eat.
Grace and Joshua delayed putting Isaac in a wheelchair for as long as they could, in the hope that his muscles would continue to be strengthened with exercise and use.
But it was a losing battle. Despite the physiotherapy, Isaac began to have frequent falls.
“Every time we heard him fall, our heart would jump and we’d help him up and give him a hug. Sometimes we would see a flash of agony on his face. But then he would get up without a fuss.”
By 12, Isaac was fully in a wheelchair.
“Every time we heard him fall, our heart would jump. But he would get up without a fuss.”
For a boy who loved long walks and the wide outdoors, it was a blow. Yet there was not a word of complaint from Isaac.
He and younger brother Shalom, who was in a wheelchair from the age of six, were four years apart in age. They were inseparable, watching Tom and Jerry cartoons (“the mouse very naughty”, Isaac would pronounce) and play computer games together.
Shalom, who does not have autism, looked up to his kor kor, and his kor kor doted on Shalom (“Baby” to him) so much that one day when he felt his legs giving way, he called out for help – not for himself – but for Shalom whom he couldn’t physically care for any more.
Shalom, now 24, recalls that in spite of being best buddies with Isaac, “at that age, I couldn’t understand why I couldn’t talk to him like I could talk to my jie jie. Once I actually bit him out of frustration! He yelled in pain, but he never retaliated or got angry with me.”
The diving board
The brothers went horse-riding, sailing and swimming – activities organised by the Singapore Disability Sports Council.
In spite of his formidable challenges, Isaac remained cheerful and gutsy.
“He used to have a swim coach who was very strong, he was a diver in the Navy,” Grace says. “We would take Isaac to the Olympic pool at NIE in Bukit Timah, and it took the combined strength of my helper, Maria, and me to lift Isaac up and into the water after wheeling his chair to the edge of the pool.
“But this coach would carry Isaac up to a high diving board and drop him into the 4-metre deep pool! He said it would train Isaac’s confidence – which it did, but it was scary for me to watch. I would be walking at the track nearby, praying!
He would complete the swim all by himself, with spectators cheering and clapping him on.
“Isaac himself had very little fear. And every time I saw him smile, I knew he was alright. He was swimming for a long time after going on the wheelchair. It kept his muscles and lungs strong.”
Isaac swam for nine years under the watchful eye of his formidable coach and even took part in swimming meets organised by the Disability Sports Council.
No other child with his condition competed, so he would complete the swim all by himself, with spectators cheering and clapping him on.
“He won first prize every time,” laughs Grace, “because he was the only one in his category!”
Worship, mummy, worship
But it wasn’t his accomplishments that Grace loved best. It was Isaac’s inexplicable love of worship.
When Isaac was five, Maria told Grace excitedly: “You know, Ma’am, last night Isaac sang ‘Jesus Loves Me’, the whole song!”
Grace, who was just about to send Isaac to school, called out: “Isaac, Isaac, would you please sing that for mummy?”
“He stopped, turned around, and sang ‘Jesus Loves Me’. And after he sang the whole song, he stood there and cried. We were so moved. I believe it was the thought that Jesus loves him that touched him.”
As a pre-schooler, he would become totally absorbed by his colouring and drawing. His older sister, Jane, once got frustrated by his lack of responsiveness.
In the face of her annoyance, young Isaac stopped his colouring, turned to her with a beatific smile and said: “Jesus loves you.”
After he sang ‘Jesus Loves Me’, he cried. It was the thought that Jesus loves him that touched him.”
Grace constantly played worship music around Isaac and when she played hymns on the piano, he would wander from his room, leaning against the piano to listen, sometimes tearing up.
When Isaac was in his early teens, the family was at a church retreat in Malaysia. In the hall one evening, the acoustics for the worship segment were jarring and painful to the ears. Sensitive to Isaac’s discomfort, Grace wheeled him out of the room. But as they left, Isaac held onto the doorpost.
“Isaac, what’s wrong? Mummy wants to take you to another room ‘cos your ears are hurting,” Grace said.
Isaac replied: “Worship, mummy, worship.”
When no-one else could reach the core of this quiet boy, it seemed God could.
Art like a candle
At age 10, Isaac was introduced to art through the Very Special Arts’ (VSA) Barrier-Free Art Programme.
Shortly afterwards, he started formal art lessons with teacher Ng Geok Seng from B Inspire, a team of artists accredited by the National Arts Council and the Ministry of Education to encourage the artistic ability of children with special needs.
The depth and beauty of the pieces Isaac rendered from his wheelchair, amidst a scenario of rapidly weakening muscles, moved the public and art critics alike.
What Isaac wanted to express in words but could not, he expressed with eloquence in poetic brush strokes and descriptive colours.
One of his pieces was chosen by Ritz-Carlton Millenia Singapore to be made into gift cards, another by Credit Suisse for use in their corporate planner.
His winning piece in a VSA competition, entitled Seed of Peace, now hangs in Prime Minister Lee Hsien Loong’s office upon the request of Mdm Ho Ching.
“His art expresses a vision that pierces through the often grim realities that cloud our world.”
So vivid was Isaac’s art and so deep his enjoyment, that little brother Shalom also decided to take up art.
Together they would sit side by side in their sun-dappled art room, Isaac making abstract splatters and bold strokes, Shalom painting ladybirds and chicks.
By the time the boys were 10 and 14, they had won numerous competitions and sold about 25 paintings between them.
In a book entitled, Not a Wasteland, of Isaac’s best works, published by Landmark Books, Singaporean poet Lee Tzu Pheng wrote in the foreword: “Candlelight appears brightest in the dark, and is the more appreciated by those who look to its glow when the darkness seems to persist unrelieved. Such is the impact of Isaac Lim’s artwork.
“It is not simply the fact that he has brought to light an amazing gift despite his physical impairments, though that is bound to inspire. What is the more affecting is how his art expresses a vision that pierces through the often grim realities that cloud our world.”
“They say a picture is worth a thousand words. For Isaac, that really was the case.”
More than the accolades, Isaac’s family treasured how his art gave glimpses into the deepest part of his soul which they couldn’t otherwise plumb.
In a video made of Isaac and his art by ThreeSixZero, Isaac’s dad, Joshua, now 60, reflected: “The portraits speak of his character, his personality. His cheerfulness, his contentment. Every stroke, even though it was physically taxing for him, he persevered to finish.
“So these two pieces speak of his personality. We want to remember him as a special child. And not because of his autism and physical weakness.”
Shalom, now 24, adds: “My art sold well because it appealed to the mainstream, but his art was admired by art experts because it had so much depth and meaning.
“They say a picture is worth a thousand words. For Isaac, that really was the case.”
Let him go beautifully
“That was not to say life was easy,” Grace says quietly.
Grace and the family’s two faithful domestic helpers regularly rushed Isaac from one therapy session to another.
On his 15th birthday, Isaac was baptised in a borrowed pool in their back garden. “He was really happy,” Grace remembers.
That same year, he had a spinal operation and lost much of his physical disability as well as some of his speech.
At 18 the spunky young man graduated from the Spastic Children’s Association of Singapore in a ceremony “with a square hat and all”.
He was still painting, but missed the company of his classmates. So Grace “knocked very hard” at the door of St Andrew’s Autism Centre, who welcomed Isaac to its classes several times a week.
“He was happy among people.”
“Lord, not now. I’m not ready. Will you have mercy?”
At 23, Isaac’s heart and breathing had weakened to the point that he choked on his phlegm and his oxygen saturation fell to a dangerous level. Not having enough strength to cough out the phlegm, he blacked out until Shalom had the helpers put Isaac on the oxygen machine Shalom used every night.
It worked – Isaac’s oxygen levels went back to normal. But his condition was still unstable.
As Grace sat with Isaac in his room, agonising over his suffering, God spoke to her with gentleness: “It’s time for me to take Isaac home, Grace.”
She cried out: “Lord, not now. I’m not ready. Will you have mercy? Give me two years to prepare myself and my family for Isaac’s home going.”
After two months, Isaac pulled through.
Two years later, in 2016, Isaac became gravely ill when he choked on his food and had aspiration pneumonia. He spent his 25th birthday in the hospital. When Shalom was wheeled into his hospital room, Isaac teared. He had missed “Baby”.
“I think he thought he would not get the chance to see me again,” says Shalom.
“I told God: Lord, when it is time for him to go, please let him go beautifully, in good health.”
After 15 arduous days fighting for his life, the determined young man recovered well enough to return home. But he had to be fed through a nasogastric tube, which pained Grace – Isaac loved his food, but his swallowing muscles were too weak now to work.
Shalom relates: “After Isaac’s discharge, we had family worship and communion with Isaac every Sunday to pray for his full recovery. Isaac loved to worship and we always looked forward to our weekly family worship time. And God answered our prayers – he pulled through!”
In 2018, Isaac suffered heart failure. It was a difficult time but the family painstakingly and tenderly nursed him back to health. The very next month he had several episodes of heart failure and then once every month.
“I would be texting my cell members and my brother in Perth, saying: Please pray. It was very tough,” says Grace. “I told God: Lord, when it is time for him to go, please let him go beautifully, in good health.
“I shared this with my friend and she said: “How can that be possible, how to go in good health?”
Grace replied: “Can. If you ask God for it.”
Sure enough, that is how Isaac went home on December 7, 2019. Peacefully, in his sleep.
Not a wasteland
“God’s grace is just amazing. He showed that He delivers on His promises,” Shalom says, wonder in his voice. “In 2014 when my mother asked Him for two more years, God not only fulfilled His promise to keep Isaac for two more years but gave him five more years … the number of grace.
“This is what our God is like. You ask him for one thing, He gives you 10 things!
“My mum asked for a peaceful home-going for Isaac, and God honoured that too.”
Wishes and messages poured in from friends around the world at the news of Isaac’s passing.
“God has sent him to inspire others and he did it beautifully, gently, yet very successfully.”
“I love Isaac’s eyes of love. That’s what I always remember of him. He has been a blessing and joy.”
“In Isaac, God showed His strength made perfect in weakness.”
“We didn’t meet Isaac enough but every time we did, my husband and I were deeply inspired, touched and spurred to persevere and do more for our special ones.”
Grace marvels at how this smiling man of few words in a wheelchair impacted so many in his short life.
Shalom says: “In Isaac, God showed His strength made perfect in weakness.”
And the verse that God gave Grace when Isaac was first diagnosed with DMD – Proverbs 26:2? She finally understands its meaning.
“Isaac was never cursed, he was not a wasteland, he had so much to give. All his life he was blessed with a joy and peace that could only have been from God.
“He taught me and others many things about life – how to live it – and about the God whom he loved and who loves him.”