Special children, fatherhood challenges

People say fatherhood is not for cowards.

When three Malaysians found themselves gifted with special children, they could have chosen denial, indifference or escape. Instead, they stepped up to the plate.

TWO people fall madly in love, get married, then start a family. They embrace parenthood with delight and watch with pride as their children grow up.

Before they know it, their little ones grow up and leave the nest. They, in turn, grow old and the roles are reversed. Their children now take care of them as they sit back and enjoy the fruits of their labour.

In a perfect world, that is how most parents would want their lives to unfold. But, what happens when the roles cannot be reversed?

Looking at Ong Seng Chee, it is hard to imagine the challenges he faces as a father.

Ong smiles easily and his calm demeanour belies the enormous responsibility that comes with caring for two wheelchair-bound children with cerebral palsy (CP).

Ong who hails from Sitiawan, Perak, retired from running his own business in 2000, when he was 52. He then devoted his entire time to taking care of his two special children, Jennifer, who is 36, and Jeremy, 19.

He and his wife, Nancy, have another daughter, Ginny, who is 28.

“When Jennifer was born in 1973, she appeared normal. Then she started walking only on her toes. We felt something was wrong and took her to a child specialist in Petaling Jaya,” he recalls.

The specialist recommended that Jennifer undergo an operation in which two holes would be punctured in her ankles to lengthen the tendon, Ong says.

Jennifer, who was one then, was in a cast for six months after the operation. When it was removed she still could not walk. Her parents were then told that she was a “delayed spastic”.

According to the Spastic Children’s Association (SCA) of Selangor & Federal Territory, a spastic is a person with cerebral palsy. It is a disorder of movement that occurs in the early years of life, due to damage, or failure to develop, of a small part of the brain that controls movement. CP takes many forms and no two spastic people are exactly the same.

Ong heard about the SCA and began taking Jennifer there for therapy. Today, she continues to attend this special school.

Ginny was born eight years after Jennifer, and Jeremy, nine years after Ginny.

“When Nancy was in her seventh month of pregnancy with Jeremy, her water bag burst. She was bleeding and she had to undergo a caesarean.

When Jeremy still could not walk at 18 months, the Ongs noticed similar, dreaded signs. A scan showed that half of the left side of his brain had not developed because it was water-locked.

They also learnt that when Jeremy was born, blood failed to reach his left brain. As a result, he had a mild stroke which affected his right hand.

“I went on the Internet to read everything I could about cerebral palsy. I learnt that it is very rare to have two children in a family affected by it. But it happened to us. And we have no family history of CP,” Ong says.

In those early years, he and his wife did not want to believe that CP was something permanent; they kept hoping for a cure.

“We sought all sorts of help and therapy, from visiting a temple in Seremban, to seeing a bomoh and even sending Jennifer and Jeremy for Indian massages.”

But as they learnt more about CP, they finally understood and accepted the inevitable.

“The important thing for CP sufferers is to continuously undergo physiotherapy and speech therapy, so that they can function and live more effectively,” Ong says.

“When Jennifer was about 25, she always asked me why she is the way she is and why she needed to go for physiotherapy, which is painful. All I could do was console her and say physio was necessary for her to be healthy.”

Now that the Ongs are retired, their schedule revolves round their children. Every morning, Ong will drive Jennifer and Jeremy, together with other children with CP, to the SCA, where classes start at 8. At 1pm, the route is reversed. In the afternoons, he takes over some of the household chores from Nancy.

“We seldom talk about our situation. When it first happened, we just lived with it. We were quite young then and busy with our jobs. Also, we didn’t feel the strain so much because we had a maid to help out.

“When Jennifer and Jeremy were younger, they were much easier to manage. When we entered our 40s, we realised the difficulties of caring for two CP children who were growing up. I have to carry both of them to the washroom. My wife then takes over Jennifer and I handle my son,” adds Ong, who also volunteers at the SCA. He drives a specially built van to ferry other CP children around, and helps out at the centre.

Ong knows it’s no fun being wheelchair-bound or cooped up indoors. So, occasionally, he takes his children to wheelchair-friendly Ikea and The Curve in Petaling Jaya, where there is easy parking for the disabled. “As a father I really need lots of patience. But as I grow older, I find that I have less of it. Sometimes I wonder why I get angry so fast; then I learn to calm down,” Ong admits.

As for communication, he understands his children’s frustration and disappointment when they try to tell him something and he cannot understand them,

“My kids can talk and eat by themselves. Sometimes I put myself in the position of parents whose CP children cannot move, then I don’t feel so bad.”

Ong believes it is very important for parents of children with any disability to mix with similar parents and form a support group. It is crucial for them to talk about their special child and let their feelings out. “If you keep your feelings and your guilt in your heart, they will explode one day.”

Looking ahead, this committee member of a parents support group says: “The Spastic Centre is putting up a new building and we are lobbying for a respite home to be set up in the new block. The home will enable a CP child to stay in temporarily and give his parents time off to go out or attend to personal matters.”

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