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Group helps parents with disabled children

Parents of developmentally challenged children will soon be getting a helping hand from a new association established in Taipei yesterday.

Most social groups focus on services and therapy for developmentally challenged children, but do not have resources to extend comprehensive help to their parents, said Chiang Yao-min (姜堯民), chairman of the newly-established Taiwanese Association for Parents of Children with Developmental Disabilities and associate professor of finance at National Chengchi University.

Saying that they too, need a central organization to deal with their unique problems and emotions, Chiang and other parents with disabled children decided a year ago to organize.

"When parents find that their children are developmentally challenged, they feel anxious and helpless. There are many kind-hearted people and professionals to help our children. To show our appreciation for their efforts, we parents need to stand up and give our all by sharing our experiences and encouraging parents of other developmentally challenged children," said Chiang yesterday.

The association will work with other organizations for the disabled to provide parents with family counseling services, informational courses on developmental disabilities, and legal and social resources, Chiang said. A 24-hour counseling hotline for parents is also in the works, he added.

Most important however, the association will put parents of the developmentally challenged in touch with each other to share experiences and provide support, said the group.

The association aims to make a difference in the lives of parents such as Chang Tien-maio (張天苗), a 48 year old manager from Miaoli County.

After their first daughter died of complications from Edward's Syndrome, a rare congenital disease that claims victims before their first birthday, the Changs decided to get a prenatal test when they conceived again four years ago. Test results revealed that their second daughter, Chang Hsin-en (張信恩) would be born with Down's Syndrome.

"We struggled in our decision to keep our baby. But in the end, we decided that she was a gift from God. We had no right to decide whether she should live or die," said Chang.

Despite objections from family and friends, the Changs decided to keep their daughter, whom they call a blessing.

"Children with Down's Syndrome have very optimistic and loving natures. Our daughter is very affectionate," Chang said.

Dealing with social reactions has been difficult, said Chang, especially since Hsin-en's blunt fingers, slanted-down eyes, and flat nose -- all features associated with Down's Syndrome -- clearly mark Hsin-en as different.

"In the country, many people still have very traditional beliefs. Sometimes people there will tell my wife and I that we must have done something terrible in our past lives to deserve a `problem' child," Chang said.

Chang has also established a Miaoli association for parents of children with Down's Syndrome. Hopefully, the association will make it easier for parents in southern and central Taiwan to obtain access to the social and medical resources available in the more advanced north, Chang said. To learn more about the association, call (02) 2504-5834.
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