Helping hand: Nivan ‘speaking’ with a letter board. Uma (left) has to guide him by holding his elbow as Nivan’s body constantly moves uncontrollably.
PETALING JAYA: It has been almost 14 years since the day Nivan lost his ability to speak. He was diagnosed with autism at the age of two and many of his teachers had given up hope on this 15-year-old but not his mother Uma.
Uma has been his guiding light and the first sign of breakthrough came when Nivan was four.
Nivan’s family had a chance to live in Brisbane, Australia, for a year because of his surgeon father’s work.
That chance was optimised by Uma. She took Nivan to see speech language pathologist Jane Remington.
It was through the specialist that Uma learnt how to understand what Nivan was trying to tell her in writing.
Using a letter board, Uma helped her youngest son communicate with her.
Nivan learnt to point at letters on the letter board to form words.
Soon he was able to string simple words such as orange, me and you.
When the family returned to Malaysia, Uma continued to use the letter board at home. She then sent Nivan to a preschool where her elder son Thavish was schooling.
“But it was a mistake. Thavish came home telling us to please take his baby brother out of the school. The teachers tried to force him to do what he obviously cannot do – to speak.
“I then had to make one of the most difficult decisions in my life – to take Nivan out of school and to try to handle his education from home,” said Uma who quit her accountant job to take care of her son.
Nivan himself admitted it in one of his letters to the writer during their correspondence period from March last year until now.
“I said a few words a long time ago. But I stopped suddenly. I can’t remember much but my parents tell me about it. I always try to speak but I can’t. My voice cannot seem to say what my brain needs to express,” said Nivan, who stands at 170cm tall.
“Not being able to articulate my thoughts directed me to another way to communicate.
“Now I am starting to say some words.
“Eventually I am confident I will be able to speak.”
Asked whether he had been following the news about the missing MH370 plane, Nivan said: “I am sad as there is no good news every day. No one likes uncertainty.”
Nivan first wrote to the writer on the issue of moral education. When the letter was published in May last year, he wrote that he was inspired to write more.
So far, he has written six pieces on issues ranging from the standard of English in Malaysia to how the advancement of technology could help a person like him.
In the technology article he wrote: “She (Uma) taught me how to type using a digital keyboard.
“Life became a little easier. Shortly after that we were introduced to Word Q, an assistive technology software ... My life depends on technology.”
So what does Nivan want to be? The teenager smiled and typed out the word “journalist”.
Nivan’s articles will appear in a weekly series in StarEducate from April 6, in conjunction with World Autism Day which falls on April 2.