Down's syndromes boy wins with parents' support

Dewi Santoso, The Jakarta Post, Jakarta

All parents dream that their children will be born normal, attractive, healthy individuals. Nobody ever expects that their child will have a disability.

If they are born with a congenital condition, it may lead to intense feelings of sadness and confusion in the parents.

It was a problem that faced Aryanti R. Yacub when her son, Michael, now 13, was diagnosed with Down's syndrome while still an infant.

"It all began a year after Michael was born. A couple of friends came to pay a visit, and when they saw him, they said that something might be wrong with my child."

At first, she did not take her friends' comments seriously. But after several more of her friends made similar comments, she took her son to Singapore for a chromosome test for the congenital condition, characterized by moderate to severe mental retardation, slanting eyes and a broad, short skull.

"When the doctor there told me that Michael fits all the criterion for Down's, I was stunned. I felt like the whole world was suddenly covered by dark clouds. I saw nothing but darkness," she said, her voice trembling with emotion.

She was taken aback because there had been nothing unusual in her pregnancy. "It was just the same as his two older brothers," she recollected.

For a while, she said, she was both embarrassed and saddened, and could not stop asking, "Why Michael?"

Having a child with a disability can cause a deep sense of shame among parents, especially in a communal society like Indonesia.

"There were times when I didn't feel like taking Michael out to public places because I felt depressed by the way people looked at him," she told The Jakarta Post.

Her husband found his own way of adjusting.

"When he introduced Michael to his friends, he always said 'This is my son, Michael, and he has Down's syndrome'. He was trying to tell people about Michael's condition so that people wouldn't think badly of him."

The whole family, including Michael's two older brothers, went through a period where they had to adjust to and accept the fact that Michael was different.

"But God is very kind. He gave me one year to enjoy a 'normal' life with Michael (before his diagnosis), and I thought it was enough. And so I began to wake up from all the sadness," she said, smiling.

Time and learning more about the condition -- caused by an extra chromosome 21 -- have helped her.

"I just take him out now. I feel proud of him," she said, adding that her neighbors and friends were supportive of her family.

That pride and support have translated into success for her son.

Since Michael's two older brothers were active in sports, she also tried to find out what her youngest son was good at. She began to let Michael exercise with them at the age of two, and soon discovered that Michael was good at running.

When Michael was five years old and attending Dian Grahita School for the Disabled, his principal asked her to establish a forum for Down's Syndrome, but she rejected the offer.

"I rarely went to the school then. I just didn't have the heart to see other kids who were worse off than Michael," Aryanti sighed.

Four years later, after realizing that she needed to share her experiences, both positive and negative, in caring for a child with Down's syndrome, she established the Indonesian Down's Syndrome Association (ISDI) on April 21, 1999.

With an office in Cikupa, East Jakarta, ISDI's activities include holding a seminar once a month, with experts on Down's syndrome providing information and knowledge special care needs for the children for its 200 members from across the country.

"The seminars are helpful as they can assist us with information on how to go through our children's puberty, as you know that it isn't easy to communicate with children with Down's syndrome," she told the Post.

ISDI also cooperates with psychologists in helping them cope with their kids' erratic moods and behavior, she explained.

As if being active in ISDI were not enough, the mother of three dreamed of enrolling her son in the Special Olympics -- and succeeded.

"In 2001, ISDI was officially enrolled as a participant in the Special Olympics. Michael passed all the requirements, and he was qualified to enroll," she said.

She enlisted a private coach to help Michael, and he won a gold medal in the 100-meter sprint in the Special Olympics World Summer Games in Dublin, Ireland, this year.

Even with her son's successes, it's been a long road to acceptance for Aryanti.

"I think you can never really 100 percent accept it as there's always this word 'I wish'. But then again, you have to stop looking at their faults and start looking at what they are good at," she said.