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)