Parents still feel stigma of Down's syndrome

Parents still feel stigma of Down's syndrome

JAKARTA (JP): Dahlia, not her real name, almost fainted when a
doctor told her that her new-born was intellectually disabled.

"'Mentally disabled' sounded so hurting. My world crashed. I
felt like I have let everyone down. My husband, my parents and my
other children. I couldn't bear to face them," recalled Dahlia
who gave birth to a disabled child in her late thirties.

She went on to say that during the first days at the maternity
hospital in Jakarta, she couldn't bring herself to touch her
baby. "It was only on the third day that I overcame my feelings,
went into the nursery on my own, and picked her up. I realized I
was wrong in treating the baby that way. She didn't want to be
born. It was us who expected her arrival. She was a gift from God
for me and my family," Dahlia said.

Another shocked reaction was expressed by Lucky Hidayat, a
father of four children. "I felt I must have done something
terribly bad to be punished like this. My other children are all
healthy. "

Ina, a 35-year-old mother, whose child has Down's syndrome,
shared her experience saying, "When my child was born, my husband
didn't want to talk at all about the child or my feelings about
her. I thought him cold and unfeeling. It was only years later
that a good friend of ours mentioned that my husband used to sit
in his office every evening and share his grief. At the time I
felt so lonely, I wish he had spoken to me."

For many parents, the birth of a child with intellectual
disability is a tremendous blow to their self-esteem. They feel
that giving birth to a child with a disability reflects badly on
them.

Nyoman Wiranata, a Balinese businessman, was sad when his wife
gave birth to a baby with Down's syndrome thirty years ago. "I
did not know who was to blame. I was confused and very sad. I
didn't know what people would think about our family," he said.
His son, Komang Wirayasa, is now 30 years old.

Balinese people believe it is their ancestors who pass on good
or bad things to their descendants. "We believe in reincarnation.
People who have done good deeds during their lives will be
reincarnated as better human beings," he said.

Nyoman said he sent his son to a school for the intellectually
disabled in Yogyakarta some years ago, but people thought he was
callous to abandon his child in such school.

Saragi, an expert on intellectually disabled children, said
parents react differently to the news that their child is
intellectually disabled but most of them share some common
feelings. These are ordinary people reacting to an extraordinary
situation. Reactions usually come from the heart, not the head,
he said.

Sahria Hasan Askar's experience in taking care of a
intellectually disabled child is touching. In her book entitled
Jangan Buang Anak Terbelakang (Don't neglect the intellectually
disabled children), she wrote about her 38 years of experience
taking care of her youngest son, Yusuf, who has Down's syndrome.

"It was Yusuf who totally changed my life," said Sahria, a
housewife who later became an active social worker.

Sahria, 78, admitted she was shocked to learn that her Yusuf
was intellectually disabled. But she never gave up. "I brought
Yusuf to many experts to seek proper treatment for him. My late
husband even went to shamans because he felt he was cursed," she
recalled.

In addition to her efforts, Sahria also committed herself to
learning how to take care of a intellectually disabled child. She
was also concerned about his education.

With the help of her close relatives and friends, Sahria was
able to travel abroad and learn about the treatment of
intellectually disabled children in the United States, France,
the Netherlands, Switzerland, Belgium, Japan, and other
countries.

When she returned home, she established the Mutiara
Foundation, a non-profit organization dealing with education and
treatment for the intellectually disabled.

"Indonesia needs more institutions which provide medical
treatment, education, sheltered-houses, and employment for the
intellectually disabled," Sahria explained.

With limited funds from private sponsors, companies, and the
government, the Mutiara Foundation manages two institutions.
Wisma Mutiara I is an education center and a short-stay home for
intellectually disabled children and Wisma Mutiara II, a workshop
and a long-stay home for intellectually disabled adults.

Apart from education center and other facilities for the
intellectually disabled, Sahria feels it is important to educate
society and change the existing attitudes toward the
intellectually disabled.

"It is not a secret that many people still treat children and
adults with mental disabilities as if they are not human beings.
These unfortunate kids often become people's laughing stocks,"
Sahria maintained.

She remembered how people had always stared at her son
wherever they went. "Everywhere I went, people were looking at
him in odd ways. Children kept calling him Orang Bego -- twit,"
she said.

The saddest thing came when Sahria found her son standing
naked in front of her house. "On that day, Yusuf went to school
with a clean, neat uniform. On his way there, he was disturbed by
some naughty kids who took off his clothes and scratched his body
and face with colorful paints. Yusuf just stood there. I didn't
see him cry but I understood that he was very sad and
frustrated," Sahria said.

Ina shared Sahria's experience. She said that in the past
people in her neighborhood always told their kids to keep away
from her son. "These children were not allowed to visit our house
because we had a intellectually disabled child. Their parents
thought that my son would spread a contagious virus. I thought
that they were so cruel, but then I realized they had no
knowledge about intellectual disability," said Ina.

To share both her sadness and happiness, she joined an
association of parents who have children with a Down's syndrome.

There are several associations dealing with intellectually
disabled children, including the one managed by Harapan Kita
Hospital in West Jakarta.

Such associations vary in their activities. They have regular
meetings where parents can share their experiences and
information. Some are better organized and run conferences and
sponsor scientific programs.

"Try not to bottle up your feelings. The best way to cope with
the intense emotions is to talk about them with others. Do not be
afraid to cry and to share your frustrations. There is no better
way to diminish distressing feelings than to share them with
sympathetic friends and experts," Ina said. (raw)