The Boy Who Proved Experts Wrong


I must tell you about a little friend of mine named Adam.

Most times when I see him, the eleven-year-old would be seated at the school canteen, having a bite at breakfast. He eats slowly with an air of sobriety and is careful that the crumbs do not fall onto his lap.

I once presented Adam with a copy of Horrible Science: Blood, Bones and Body Bits, a book that was a favourite with my children. This was the message I wrote inside the front cover flap:

Dear Adam,

Your mom says you really want to be a doctor. Well, this is a book about the kind of stuff you will find in the human body. She also says you love reading so much that all your books are dog-eared … I do hope this book will be treated the same way! I’m sure you’ll be a great doctor one day.

Two days later, I bumped into him at the school gate. “Are you still reading your new book?” I asked.

“I finished it,” he said, looking up at me with big eyes and adjusting his dark-rimmed glasses that sat a bit crooked on his nose bridge.

“You did?” I was pleasantly surprised. The book was almost three-quarters-of-an-inch thick with fairly small print. I had thought he would have needed a few more days, since it was still not a weekend. But with determination like Adam’s, I should have known better.

When Alina, Adam’s mother, was expecting him, she had an infection during the first trimester. The rapidly developing brain of the foetus was adversely affected.

“A day after he turned one, my husband and I went to see a paediatrician at a certain private clinic,” she recalled. “We were informed that Adam has what the experts call ‘late development’. The paediatrician told us squarely in the face that our son will never amount to much. I was stunned. It was like a death sentence. When we got home, I told my husband, ‘We’ll prove the experts wrong.’” And prove them wrong they did.

Over the next several years, Alina stayed home and patiently sat down with Adam each day, painstakingly going through every letter of the alphabet, talking and responding to his every question. When he was six, she brought him for another check-up, this time at a government hospital. The consulting paediatrician was stupefied to discover that Adam could read as well as any six-year-old in spite of his condition.

Alina concedes that, with Adam, everything needs more time.

“When he was five, it took him three months to read his first Ladybird book. His younger brother only needed two weeks,” says the mother of three. “But I noticed that he has a good memory. He can recall events that happened when he was just two-and-a-half years old. He remembers the places we went to plus the details of what we did there. Even I can’t do that!”

A WORLD OF THEIR OWN

I was once a volunteer at a centre for severely handicapped children. Many of these children suffered from cerebral palsy and needed care round the clock. Some of them were infants and quite a few were adolescents. A number had recurrent seizures which could occur anytime, anywhere. Because of the severity of their condition, many of the children were confined to mattresses on the floor where they could roll with help from the nurses. The most neurologically challenged of them would stay in exactly the same position as you left them.

A few of the children could do more. A teacher came daily to teach them to read, write, sing and play basic musical instruments. On one side of a wall, the teacher had proudly put up their handiwork and written down the names of all the children. As she put it, “Their work represents all of the other children as well.” Kamal was one of the few, more able children. His lower body didn’t function and had to be dragged to wherever he wanted to go. The sixteen-year-old boy got around by pushing or pulling his torso. When I asked the teacher about his progress, she said, “I have been teaching Kamal how to add and subtract for several years. He still can’t go beyond two-digit numbers.”

On one occasion, I watched as he sat lopsided on a chair, then grabbed a pencil and laboriously attempted to subtract 13 from 21. He could see better with his left eye and usually tilted his head in such a way that the left eye was about eight inches away from pencil tip and paper. Kamal had a warm and congenial nature. His spoken English was good and I often saw him striking up conversations with new volunteers.

If you were a visitor to this place and not used to severely handicapped children, seeing them for the first time can be emotionally draining. For one, this place was a far cry from the outside world where children run about, laugh and are a constant source of clamour and din. In this place, Kamal was a gem. He would instantly put new volunteers and visitors who were not used to seeing severely handicapped children at ease with his easy banter. But as I said, Kamal was one of the exceptional few. Cerebral palsy for most of the other children meant the inability to talk and communicate their needs. A few hours is all you need to appreciate the frustration induced by the huge communication hurdles between the children and their caregivers.

“MY LEFT FOOT”

Such are the difficulties experienced by those who have cerebral palsy. One can be forgiven for wondering if they can achieve anything significant in their lives. Yet, not too long ago, a boy who was born with cerebral palsy won a children’s painting competition at age twelve. Later, he created history by becoming a celebrated author, poet and painter. When he was an infant, the doctor who diagnosed his condition warned his family not to expect anything from him as he was “mentally defective”.

But his mother protested. She said, “It is his body that is shattered, not his mind.” The boy could not control his speech or his body movements. The only part of his body that he could move on his own free will was his left foot. One day, with this foot, he grabbed a piece of chalk from his sister and scribbled some marks with it. From then on, his mother began to coach him to read and write.

It was a slow, painful process for both mother and child. But by the time of his demise, Christy Brown had penned several books and poems and painted his way into people’s hearts, all with the use of his left foot. As a writer, I often remind myself of Christy Brown when I have doubts about whether I can achieve what I had set out to do.

Christy Brown was not born into a wealthy family. His father was a bricklayer and his mother a homemaker. Between them, they struggled to raise thirteen surviving children of whom Christy was the sixth. Many of his contemporaries had perfectly formed physical features and grew up in families that led far more comfortable lives. Yet, Christy achieved far more than they did!

THE BLIND MAN WHO SCALED MOUNT EVEREST

And then there is Erik Weihenmayer. Erik, in case you haven’t heard of him already, is a man who had perfect eyesight at birth. He became totally blind at thirteen due to a rare eye disease. At first he was devastated. Erik’s father, Ed Weihenmayer, put it to Erik to question his ideas of what a blind person can and cannot do. His father sent Erik to a rock-climbing school for the blind where the boy did more than just rock-climbing. He began to reflect on things.

His defining moment was when it dawned upon him that:

“If I thought I couldn’t read but I can and if I thought I couldn’t be mobile, but I can, maybe there are other things that I can do that I don’t think I can do, if I just approached it differently.”

Erik soon realized that wallowing in self-pity won’t change anything. He chose to change his attitude. He focused on what he could do instead of what he could not do.

By the time he graduated from high school, Erik was the school’s wrestling captain. He went on to graduate school and for a time, was a teacher. At age thirty-three, Erik created history by becoming the first sightless person to reach the peak of Mt Everest. How did he do it? In his words – “Step by step, moment by moment.” Today, apart from having scaled some of the world’s highest peaks, Erik is an author and a motivational speaker.

It’s amazing what boys can achieve when they’re motivated.

What did Adam, Erik and Christy Brown have in common?

They all had parents who believed in them. Despite their limitations, their parents expected them to give nothing less than their personal best – the best they are capable of. Interestingly, none of these parents were considered “experts” in terms of raising boys, not to mention boys with special needs. All of them were regular people like you and me. Yet their parents knew that:

  • with boys, you need to stress more on effort, less on ability
  • with boys, you need to set high expectations
  • boys love challenges

THINK ABOUT IT: What would you do if you had a son like Adam, Erik or Christy?

 


About Jamilah Samian

Jamilah Samian is the author of COOL MUM SUPER DAD, COOL BOYS SUPER SONS, and THE GROOVY GUIDE TO PARENTING GEN Y & Z. Jamilah is a Professional Trainer certified by The Malaysian Institute of Management. She is a Neuro-Linguistic Programming Practitioner registered with the American Board of NLP. Jamilah is also part of the team of parenting experts at ParenThots (The Star).
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