“God’s goodness is actively pursuing us”: A working father who homeschools his child with a rare developmental condition

Last year, Tan Chee Leong was seated at the sheltered outdoor area of his company’s cafeteria, watching the heavy rain pour down around him when his phone buzzed. He saw from its lighted screen that it was his wife.

“Hello?” he said. There was no reply at the other end. Then a voice came through.

“Papa, it’s raining outside. Please come back soon.” It was his 11-year-old son, Min He.

Other parents may not bat an eyelid at receiving such a call, but Chee Leong was both surprised and amazed when he heard his son make his first phone call.

Min He has Cornelia De Lange Syndrome (CDLS), a rare genetic condition characterised by developmental delays and intellectual disability.

“My mind raced. I realised that he needed to perform several atomic actions in sequence for him to call me,” said Chee Leong, 55, a researcher at DSO National Laboratories.

“His mother must have been busy, so he took her phone, found the WhatsApp icon, located my name or display picture in it and selected it correctly in order to make the call to me.

“That was a milestone for him,” the proud father told Salt&Light.

In that moment, Chee Leong was reminded of how far God had carried them since the time they discovered Min He’s condition in 2016.

A rare genetic disorder 

When Min He was two years old, he was hospitalised for seizures. Before his parents could digest the fact that their son had epilepsy, the doctor revealed that Min He, based on observable characteristics, had Cornelia De Lange Syndrome, a rare condition that affects about 1 in 30,000 births.  

Min He wired up for EEG to test for susceptibility to seizures.

That explained why he had such hairy eyebrows that met in the middle, had trouble swallowing, fell easily and was still not talking.

The couple wept at the devastating news.

“I was not angry with God. I knew I needed all the help I could get so the last thing I should do was to be upset with the very Being who could help me. I asked God more How’s than Why’s,” said Chee Leong, whose family worships at Covenant Evangelical Free Church (Bukit Panjang).  

Vomiting, seizures and falling easily 

Having no capacity to cope with the reactions of others, they shared the news only among close family members and friends. There was also no time to wallow in misery because there was so much caregiving work to be done.

In the early years, their focus was on his physiological needs. Every meal had to be carefully managed as he had a sensitive gag reflex.

“We would spend hours feeding him and he could vomit it all out. So we fed him highly blended food in small amounts multiple times a day. At times, we had to distract him with songs during meals so that there was a higher chance that he would keep his food down,” Chee Leong described.

Feeding Min He was a time-consuming affair.

Besides giving their child anti-seizure medication, they also had to ensure Min He got adequate rest to keep seizures at bay.

“We were on tenterhooks all the time as Min He has poor balance and falls down easily. With his older brother being so active, he could get knocked down anytime,” said Chee Leong. 

Min He and his older brother.

Once, he let his guard down and allowed the two boys to run around and play together. The next thing he heard was a banging sound, and he saw one of Min He’s front teeth knocked out, with another one left dangling precariously.

A visit to the A&E concluded with his teeth being extracted. The dentist then noticed that Min He’s baby teeth were not coming out fast enough to make room for his adult teeth to grow. He then underwent surgery  to have his baby teeth removed. 

The baby teeth (marked out) that were taken out.

In total, Min He had three surgeries to correct such birth and developmental defects.

Min He and his mother before a surgery.

To cope with his son’s medical needs, Chee Leong took two years of no pay leave from his company.

Unlike the rest of their family members who were covered by insurance, Chee Leong had not yet bought any insurance for his youngest son before he was diagnosed with CDLS.

“Not having insurance meant that we don’t have the option of choosing a specific doctor or dentist for Min He as it would be more expensive,” Chee Leong told Salt&Light.

Supernatural coverage 

“Yet, we saw how God provided Min He with committed health professionals – from our paediatrician neurologist to dentist to the doctor that did the surgeries – all of whom went beyond their call of duty to look out for Min He and care for him,” he said.

With their son’s physical health more stable now, Chee Leong and his wife shifted their attention to his cognitive development.

They began reading up on various research and programmes on how to help him.

To help stimulate his brain development, Chee Leong trained Min He to walk on different types of terrain. One exercise involved him walking up the stairs while carrying empty milk cartons to help train his vestibular system.

Min He holding empty cartons while walking down the stairs.

Min He crossing the log bridge. Exercises like these help to improve gross motor skills.

When Min He finally started saying sporadic words at three or four years old, his parents helped him build his speech step by step: Small word chunks, short phrases, longer sentences, and later even memory verses from Scripture.

Using homemade flashcards that went from single words to compound words and then sentences.

They made sure that Min He’s brother – three years older – also received sufficient attention from them despite Min He having greater needs than him.

Min He and his brother going on an outing with mum.

Min He was enrolled in a centre that runs the government-subsidised Early Intervention Programme for Infants and Children (EIPIC) for two years.

“The progress he made there wasn’t great. The teachers were understandably occupied with other children who had more obvious behavioural issues,” said Chee Leong.

Financial provision

God continued to provide for their needs financially through the love gifts of others. The family felt more confident in trying out other options, such as therapy in a private school.

“Our cell group blessed us with a big sum by giving our sons angpows during Chinese New Year. My secondary school teacher who was doing estate planning also wanted to give us a sum while he was still living instead of waiting till he died, for by then many of the children with special needs whom he knew would have grown up,” said Chee Leong.

“I learnt how not to be paiseh (embarrassed) about receiving help,” he told Salt&Light.

Min He doing an oral motor exercise by blowing Cupid’s Shaving Brush.

The principal of the private therapy centre where they enrolled Min He noted that they had “never taken on such a difficult case like theirs”. However, they were willing to give it a try.

Min He thrived in that school so his parents also signed him up for its affiliated preschool.

He learnt how to draw lines in school and began to recognise letters.

One day while walking back home, the 7-year-old Min He pointed to a banner that they passed by and blurted out the word “school” which was printed on it. Chee Leong wondered if it was simply a fluke but realised that his son could really recognise the word when he read it aloud again later after encountering it in a book.

Seeing that their son could recognise words, Chee Leong and his wife produced simple books for him to read.

A simple, customised book made for Min He.

In one of the books, the theme was on colours.

One page would show “The leaf is green.” The following page would display a large green leaf to accompany the sentence.

A simple book on colours.

Soon, it was time for Min He to be enrolled into Primary 1. His parents knew that he would not be able to cope in a mainstream school and applied for deferment.

The following year, they applied for deferment again and it was approved.

“After our second deferment, we knew it was rare and we would be pushing it if we wished to get a third. So we had to decide between sending him to a special needs school or homeschooling him,” said Chee Leong.

If they sent Min He to a special needs school, they were worried that he would face the same issues as those he had experienced in his former early intervention school.

At the same time, Chee Leong was also warming up to the idea of homeschooling as he found that he enjoyed trying out ideas and activities with his son.

Min He and his father going on a homeschooling outing to Far East Flora Centre.

At that time, the COVID-19 pandemic was raging on and being holed up at home during the circuit breaker period made it conducive for them to attempt a homeschool-like situation with Min He.

During this time, God showed up in the most practical ways.

Divine downloads 

For many years, Min He had trouble understanding colours. They were assured that he was not colour-blind. But when they asked him to identify the yellow Lego block, he always picked the wrong one.

One day, the Lord prompted Chee Leong to use the simple books they produced as a scaffold to teach him about colours.

Chee Leong asked Min He to close his eyes and imagine that “the sky is blue.”

“I was not sure if he understood what ‘imagine’ was as his vocabulary was still weak,” Chee Leong said. “I was hoping that by mentioning that familiar sentence from the book, his mind’s eyes would see that picture accompanying the sentence.”

Then Chee Leong asked his son to open his eyes and pick the matching Lego brick. With some hesitation, Min He stretched out to take the piece with the matching colour.

When Min He managed to repeat this with other colours, it finally confirmed that Min He had made the connection.

Min He playing with his Lego bricks.

“As I had no formal training in child education, this insight was God’s quiet intervention at just the right moment,” Chee Leong noted.

Eventually, their family decided to apply for Min He to be homeschooled.

“We understood that our application was different from other homeschooling applicants because Min He has special needs. So the process might take some time and may not be smooth,” said Chee Leong.

“Whether our application got approved or not would be – to us – signposts from God. It would be okay if God closed this door,” he added.

Homeschooling in a cafe.

After waiting for over a year, their homeschooling application was approved. The Tans saw it as a green light from God.

At that time, Chee Leong had gone back to work part-time but applied for no pay leave for another two years in order to homeschool Min He.

Homeschooling in a playground.

His wife is a stay-home mother who runs the household affairs and helps to care for their two sons.

Min He with his mother.

In the early days of homeschooling, Chee Leong often found himself frustrated and angry.

“His progress was quite slow. I thought I had lowered my expectation as to what my son can or cannot do but I realised that those expectations were still unrealistic,” he said.

Chee Leong realised that he had quite a temper as there were times when he found himself shouting at Min He. There would be moments when he contemplated giving up homeschooling.

“But each time it happened, I would repent before God at night. Then the next morning, I refresh myself with Scriptures and that helps me reset in order to tackle a new day,” he told Salt&Light.

“I have learnt that my job is not to make him ‘perfect’ before God. Rather, with the given resources I am called to help him reach his best potential. When he can’t understand, I take a step back and find alternative ways to present the concept,” he added.

Chee Leong often picks up good tips from a self-help group of parents with special needs children.

Min He learning how to count in 10s.

God also encourages him through his son.

One night, Min He was about to go to bed when he spontaneously recited from Matthew 6:25-27 about God’s instruction for us “not to worry about our lives, what we will eat or drink; or about our bodies, what we will wear. Can any one of you by worrying add a single hour to your life?”

“He was just having fun reciting what he now knows by heart. But this was a sacred moment for me. This little man was addressing my anxiety at that time,” Chee Leong marvelled.

First homeschooling, then work 

Homeschooling now is a much calmer affair.

Since last year, Chee Leong has returned to work part-time. A typical homeschooling day now involves him and Min He doing two hours or so of homeschooling activities after they have breakfast.

If Min He has therapy class that day, they would end homeschooling earlier in order for him to get to class by noon.

After the morning session of homeschooling, Chee Leong heads out to work and returns home at about 5.40pm. By then, his son would have taken his nap and tea and the father-son pair will head out for some cycling.

Min He mastered cycling – an activity that demands complex motor skills and coordination.

After showering and having dinner, Min He does some activities with his father before being read to and put to bed by his mother.

When Min He is in bed, Chee Leong prepares the homeschooling content for the following days.

At work, Chee Leong used to do research on information systems. After his last no pay leave, he was assigned to run a network in his department instead.

“It looked like a downgrade when I was first told about it. But I remind myself that I have chosen this path. Seeing Min He making progress and deepening my relationships with my elder son and wife made the investment worth it,” he told Salt&Light.

The Tan family.

“I am also grateful for the company’s support of me taking no pay leave and going part-time at different times over the years. That in itself is an amazing gift from God,” he added.

There were times when friends remarked over the “sacrifice” that he had made for his family.

“At first, it boosted my ego. But when I sobered up, I realised that had I done otherwise, I would have sacrificed my son’s development opportunity,” he said.

His relationship with his son gave Chee Leong a deeper revelation of who God is to him.

“The amount of time and resources I give to my son is crazy. But in turn, it allows me to appreciate the extent of how much Christ has done for us on the Cross and why He was willing to do so.

“My eyes were also opened to how patient God has been to me, even as I exercise patience with my special needs child,” he said.  

Today, Min He is able to do basic reading and Mathematics, as well as household chores such as mopping the floor.

Min He learning to mop the floor.

Min He cleaning the fan.

However, he wets his bed occasionally at night and experiences regressions in his gross motor skills at times.

Chee Leong rests in the fact at how closely God watches over his 12-year-old son.  

Last year, their family was at Buona Vista Mass Rapid Transit (MRT) station. As the train doors were about to close, a large man rushed out and pushed his way between Chee Leong’s wife and his son, resulting in them being separated.

Min He was left standing at the platform, while his family was carried away by the train.

“We could only frantically gesture for him to stay put. Meanwhile, a stranger – a lady we had never met –immediately took his hand and waited with him,” said Chee Leong.

Min He and his mother on another train to Johor Bahru.

They alighted at the next station, dashed for the train in the opposite direction and hurried back. When they arrived, his son and the woman were still there, waiting.

“We were deeply grateful for the stranger’s kindness and for the Lord’s protection,” Chee Leong said.

For days after the incident, the verses in Psalm 23:6 stayed with him: “Surely goodness and mercy shall follow me all the days of my life.”

“I remembered from a sermon I had heard, that the Hebrew word for ‘follow’ was stronger – it means to pursue.

“God’s goodness is not trailing behind us at a distance; it is actively pursuing my son and my family –through words learned slowly, through insights given quietly, and even through a stranger’s hand on a crowded platform.”

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