Down's syndromes boy wins with parents' support

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.