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 mentally retarded.

"'Mentally retarded' 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 the retarded child at the late 30s.

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 shock reaction was expressed by Lucky Hidayat, a
father of four children. "I felt that 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 is with a 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 mental retardation
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, expressed his sadness
when his wife gave birth to a baby with Down's syndrome 30 years
ago. "I did not know who was to blame. I was confused and very
sad. I didn't know what people think about our family," he said.
His son, Komang Wirayasa, is now 30 years old.

Balinese people believe it was their ancestors who passed 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 mentally
retarded in Yogyakarta some years ago, but people thought he was
rude to abandon the child in such school.

Saragi, an expert on mentally retarded children, said parents
react differently to the news that their child is mentally
retarded but most of them share some common feelings. They 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 mentally
retarded child is touching. In her book entitled Jangan Buang
Anak Terbelakang (Don't Neglect the Mentally Retarded Children),
she wrote about her 38 years of experience in taking care of her
youngest son, Yusuf, who has a 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 mentally retarded. 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 being cursed," she
recalled.

In addition to her efforts, Sahria also committed herself to
learning how to take care of a mentally retarded child. She was
also concerned about his education and daily activities.

With the help of her close relatives and friends, Sahria was
able to travel abroad and learn about the treatment of mentally
retarded 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 mentally retarded.

"Indonesia needs more institutions which provide medical
treatment, education, sheltered-houses, and employment for the
mentally retarded," 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
mentally retarded children and Wisma Mutiara II, a workshop and a
long-stay home for mentally retarded adults.

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

"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, a stupid
man," 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 stood in vain. I didn't see
him crying 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 mentally retarded 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
mental retardation," 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 mentally retarded
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 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 reminded. (raw)