When she was 34, married for twelve years and already the mother of an active and healthy boy and girl, Fang Wen-hsia got pregnant accidently and gave birth to her youngest son.

When giving her son preventive inoculations, doctors saw her child's split palms and the unusual distance between his eyes, and they suggested that Fang should take the child to have tests.

When the tests revealed that his chromosomes were abnormal, confirming that he had Down's syndrome, this holder of a master's degree in transportation didn't know what it meant. It wasn't until a medical worker said "he's mongoloid" that she broke down in tears and lost her voice.

They look like a family: Some people say that people with Down's syndrome look like they're members of the same family because of a similar appearance: a flat face, small and slanting eyes, a broad separation between the eyes, a flat nose, a large tongue that slightly extrudes, small ears, a concha that tends to fold down and is located below the line of the eyes, short limbs, split palms, and a pinkie that has only two joints. Besides these similarities in appearance, those afflicted with Down's syndrome have weak and inflexible muscles and low stability in their joints. These conditions effect their development of movement. At the same time, they will have varying degrees of mental retardation and perhaps complications such as heart disease and low resistance to disease.

In comparison to the vast majority of infants who "sit at seven months, crawl at eight and get teeth at nine," the development of children with Down's syndrome is much slower. It's quite normal for them to learn how to walk at two to three years and to speak their first words at five or six.

Exactly how many people in Taiwan have the syndrome? Because many parents don't take their abnormal children to the hospital for examinations, related units have no basis for giving precise statistics. In 1990 the Department of Health of the Executive Yuan commissioned Lin Hsiou-chuan of the Pediatrics department of Cheng Kung University Hospital to do a study of more than 20 hospitals in Taiwan that keep records of birth defects. She discovered that the domestic incidence of Down's syndrome was 1.18 per 1.000 births. That means that among the 300,000 births each year, 350 babies have Down's syndrome. But of these, only 45 percent go to the hospital for chromosome tests and continued treatment and care.

Why me? Because society at large not only lacks understanding but even misunderstands and rejects those with Down's syndrome, most parents of a child with Down's syndrome are told, "This child is stupid and will be difficult to take care for." And for the complications that require surgery or require the child to sleep in an incubator, some doctors will even say, "This child will be a great burden for your whole family. Short-term pain is easier than long-term pain. Why don't you give up trying to save him?"

People who know Lin Chih-mo, the chairman of R.O.C. Association of People Concerned About Down's Syndrome, say he's an extremely lucky man--lucky to have met "the person who can bring him the greatest of good fortune."

Lin recalls with gratitude the doctor telling him, "Your child has its problems, but you shouldn't be disheartened. In today's industrial society, children leave home when they grow up, but a child like this will accompany you forever."

Though experiences differ, when the health workers announce the results of the tests--whether they are direct, indirect, insensitive or delicate--the child's parents are hit hard.

The mother especially blames herself, incessantly wondering what she did wrong during the course of the pregnancy. Did I take medicine that I wasn't supposed to? Did I not pay enough attention to nutrition? And it hits mothers who gave birth to a first child with Down's even harder: "Why me?" "Does it run in the family?" "Could it be the same for the next child?"

When frightened and at a loss for what to do, some people seek divine advice. Thirty-three-year- old Wang Su-hua took her child everywhere to have its fortune told. "They said that my child was a Taoist priest in his last life who broke his vows and is being punished in this life. My husband and I gave him meat in our last lives and now we're being punished together."

What causes will lead to what results? Whether you believe it or not, traditionally Chinese have thought that the actions of one's ancestors hold the key to one's fortunes and that one's own actions will affect the fortunes of one's descendants. If you give birth to an abnormal child, whatever the real reasons, it will be widely thought that your ancestors sinned. With this conception, many families have a tremendous sense of guilt. Many mothers spend their traditional month of confinement and recuperation after birth crying whenever they see their child. While other parents were happily celebrating their children reaching a month in age, "How can we give people [the traditional] presents of red eggs and oily rice," said one father who didn't pull himself together for three months. Around the time the child had reached a month old, friends acted like they were walking on eggs when they come to give them gifts of clothes and toys.

Many people are scared out of giving birth again. In a study for the R.O.C. Association of People Concerned About Down's Syndrome, Huang lian-hua, an associate professor of nursing at National Taiwan University's School of Medicine, found that 45.2 percent of parents of a Down's Syndrome child were unwilling to give birth again and that 67.8 percent worried that their next child would also be abnormal.

According to research, one percent of next births are also abnormal, but with eugenic examination, the rate of actual abnormal fetuses brought to term can be significantly reduced. The fact of the matter is that many of the parents of children with Down's syndrome did not have the proper examinations.

One 38-year-old pregnant mother requested to have an amniocentesis test to examine her fetus's chromosomes, and the doctor told her that it wasn't necessary. When the baby was born, it turned out to have Down's. Another mother of the same age with a Down's syndrome child, didn't know that she was at high risk as an older mother, and during her pregnancy, no one ever told her that she should have an amniocentesis test.

Huang Lian-hua has even met one father who brought his Down's syndrome son to her and asked, "Is there any medicine to treat Down's syndrome?" From amniocentesis and other tests, his wife and he knew that the fetus was abnormal, but they decided to take the baby to term anyway. He already had two daughters and wanted a son.

Where is my child's home? No parents want their children to have Down's syndrome. When suddenly facing the reality of it, the first reaction is grief and denial. According to Huang's study, one third of the mothers have had thoughts of giving the child up.

After Wang su-hua's first child had Down's syndrome, her mother-in-law had a heart attack because she couldn't face the truth. Wang cried a lot every day and cruelly put her son alone in his grandmother's room. Touching him only during feeding, she left him to his own devices. Wu Cheng- yun, the chairman of the Syin-lu Cultural Foundation, says that at one time she thought she didn't want her child and asked her husband to find some where to put it.

At this point, some of the children will be put in homes. Wang Su-hua once carried her child into to a church-run home. "As soon as you entered, you smelt a strange stench and then saw the children lying and sitting about, not being well cared for," she recalls. "I carried my child out crying and cast away the idea of giving him up."

Religious belief is what put Fang Wen-hsia back on an even keel. "Each child is a precious treasure that God has placed in our hands," she says. "Though the child may have its flaws, before God takes him back I am responsible for doing my best to take care of him."

After going through the stages of shock, denial, sadness and anger, parents take different routes and adopt different methods to face the reality of the situation, accept their child and seek out proper methods of treatment, care and education on their child's behalf. And relevant information is in short supply. Parents have nowhere to go for help and take their children everywhere, testing their luck.

Those who have gone through it them selves offer pointers: Because of this, those who have gone through it before have formed support groups, hoping that these groups can allow parents of children with Down's to provide mutual assistance and support. Among these groups are the Syin-lu Cultural Foundation, which was founded in 1987, and the R.O.C. Association of People Concerned About Down's Syndrome, which was established last year. These groups are truly like lighthouses in a fog-covered sea, pointing out the right path to many families.

The R.O.C. Association of People Concerned About Down's Syndrome, for example, now has more than 200 families that are formal members, and more than 180 others have made inquiries. Besides holding regular outings and various classes related to Down's syndrome, the main work of the association is to answer inquiries and provide guidance for people first facing the problem. Yang Hsiou-chu, the association secretary, says that they get from three or four to seven or eight inquiries a day. "Some of the calls can last two to three hours," she says. "But even if our mouths are dry and arms asleep, we're not inclined to say goodbye," she says.

"Those who call us first are usually the fathers," she reveals. At a time when a mother feels very hurt, the father's attitude is extremely important. In such circumstances the fathers often have extreme reactions. Some refuse to face the problem and totally disregard it, causing even greater pain for the mother. And others seek outside help with the attitude, "My wife's down, if I don't get up myself, our family is never going to recover."

"Where are there institutions that will take care of children with Down's syndrome?" This is the first question a caller is anxious to have answered. Li Chih-mo, the association's chairman, explains that the association doesn't encourage parents to put their children in homes. Most hope that they can proceed further with guidance and assistance, but a lot of people are unwilling to leave their phone numbers. And the parents who do request relevant materials all instruct that it not be sent in an association envelope.

Besides passively waiting for people's inquiries over the phone, the association also actively seeks out parents of Down's syndrome babies. For ex ample, they ask the pediatric and inheritance enquiry departments of hospitals to give them information on patients with Down's syndrome and to pass along booklets they have printed. Unfortunately, most hospitals tightly guard the privacy of their patients, and there is little willingness to cooperate.

The highly educated aren't necessarily respectful: Generally speaking, after accepting the child, parents usually still need to go through a process of psychological adjustment and social adaptation before being able to boldly take the child out of the house and face the great variety of expressions. The length of this stage varies from person to person.

Wang Su-hua recalls that she spent more than a year blaming heaven, blaming earth and blaming herself as well as imagining all the strange looks she would get from other people. When she was ready to open up, step out of the shadows of her mind and walk out the door, she discovered that other people gave her friendly looks.

Helping her inquire about related associations, the co-workers of Fang Wen-hsia found the R.O.C. Association of People Concerned About Down's Syndrome. With words of experience and comfort words from people who had been there before, she was able to "leave behind the bitter sea" and walk out the door after a month.

Of course, there are very painful experiences.

One mother was taking a taxi to class at a learning center for the retarded, and the driver, worrying that the child would somehow taint his new car, asked them to get out.

At a fair for charity, a local health head official asked, "Is Down's syndrome contagious?" You can imagine how hurt a parent of a child with Down's syndrome standing next to him felt.

At one center for the retarded, a group of doctors and professors came to test the blood of children with Down's syndrome. The father of one child discovered that they were the same group of people who had just shortly before looked on indifferently as he struggled to get out of a cab, carrying a heavy load on his back, holding a child in one hand and an umbrella in the other. And doctors, nurses, physical therapists, experts and scholars are often among those who say, "If you just can be patient for your child to go through some training, he will actually ...." Talk like this gets under parents' skin. "Training this, training that. Why can't they say education," says one parent. "My child isn't a monkey or puppy that can be trained to more closely resemble a person!" In education for the retarded in many western countries, the use of the word "training" is widely held as taboo. Yet in the education of Down's syndrome children in particular, there are reasons why a health professional might accidently use the word "training."

The younger the better: The IQs of most children with Down's syndrome fall between 45 and 57--moderately retarded on a scale where 100 represents a child of average intelligence. Sister Huang Hui-chuan, the director of the Yujen Education Center for the Retarded, says that Children with Down's lack logical reasoning abilities but can imitate and remember. In educating this kind of child, if you practice something over and over and take things patiently a step at a time, they will eventually get it. Take washing one's hands, for instance. It is divided into the four steps of touching the soap, rubbing one's hands, rinsing with water and turning off the tap. Once they have mastered these steps, they will do the job thoroughly and assiduously.

To put it another way, of all the mentally handicapped, children with Down's syndrome are among the most able to learn. Through "training," they are able to become aware of their movements and gain basic skills of recognition, the ability to take care of themselves and other kinds of understanding. Hence, the earlier they are examined and begin their treatment and education, the better. The saying that "you're set for life at three" may be taking it to extremes, but physical therapy for children younger than three, in which games are used to stimulate reflexes and balance, can be of tremendous help to children with Down's. Some Down's children can't walk well until they're five or six, but those who receive early education and treatment are up and about when they're two.

Yu Yung-sheng, a pediatrician at the Tri-Ser vices General Hospital, points to an American study which shows that children who received early treatment and education have IQs at the age of nine and ten that average 17 points higher than children who did not. This means that their IQs approach those of the mildly retarded, and "they can freely go about all aspects of their daily lives," he says. "Some of them can even learn to write plays."

Education is extremely important for children with Down's syndrome, but on this matter parents obtain the least information and help. After the special education law was passed in 1984, disabled children just like normal children had the right to an education, and the educational authorities established classes for the retarded at some elementary schools and junior high schools. Wang Tien-miao, associate professor of the special education department of National Taiwan Normal University, points out that at first those classes were only meant for those who were mildly retarded. But because most parents of these children would rather let their children study in the regular sections, the sections for the retarded lacked students. As a result, this year they have began taking the moderately and severely retarded. Unfortunately, without an assessment system, stipulations about what materials to use or adequate teaching resources, the results are far from ideal.

As for pre-school education and vocational training after compulsory education, these fall be yond what the government is bound to provide and are mostly handled by private groups. The quality of education varies greatly. Parents tend to put their children where they will be taken, and the rest is left to chance.

When the parents get old, what will the children do? Besides the matter of education greatly worrying parents, there is another problem without solution that these parents will sooner or later have to face: After we're old, what will our child do?

Because most parents don't want their child to be maltreated or to be a burden on its siblings, parents always hope that they will outlive their children with Down's. But what if fate does not grant one's wish? The tragedy of a parent committing suicide together with its retarded child has been known to happen. Yet is this really the only route to take?

Lin Chih-mo suggests that establishing a just and fair foundation to supervise all institutions offering care would let parents rest assured about putting their children in a home after they have passed away. Wu Cheng-yun, on the other hand, believes that establishing something like community homes in every locality, in which those with Down's could work and live, is perhaps a more feasible solution. For this, one can also look to the example of the advanced countries.

In 1975, the United States implemented legislation which mandated that the life-long medical, education and living expenses of anyone with an IQ below 70 were the responsibility of the government. Whether or not their parents were alive, the mentally disabled would all have public employees to act as their guardians and protect their rights. Once they reached the age of 21, they would be taken care of by a community care center.

In comparison, it is clear that the Republic of China still has a long way to go.

The world at its most beautiful: Many observant people have noticed that there are seemingly more and more people with Down's syndrome. Huang Lian-hua points out that it's not that the percentage of those born with Down's is growing but that the survival rate of those with Down's is rising. Through surgery, heart disease that results from Down's syndrome can be treated. And with the encouragement of support groups, more and more parents of children with Down's have the courage to take their children out of the home and into society.

When children with Down's and their parents are on the streets with their chins up, shouldn't the public try to understand, accept and assist these children and their families? In this spirit, the poet Liu Ke-hsiang wrote a poem about them:

On their vast plain

the grass and flowers grow as lushly as on ours;

they may not know the names of the plants,

but they too can smell their sweet fragrance.

The stars in their skies

are as numerous as in ours;

they may not be able to express themselves;

but they also don't get mad at the world.

At our sides,

they are many;

at their sides,

we are few.

When we hold their hands in ours,

the world will be most beautiful.

[Picture Caption]

(Far left) Holding her three-month old baby, the young mother finally cracks a smile when seeing its lively and lovable older sisters.

This large ball is important in early treatment. It helps to strengthen the muscles of the child's neck, waist, back, etc.

Chih-jen is sick. Today in physical therapy class he cries loudly and has no reaction to music that he usually loves. His anxious father, covered with sweat, continually pats him.

Look! Five-year-old Ching-chun has learned how to brush his teeth!

Performing daily activities by oneself is one of the principal goals of education for those with Down's. For such activities as putting on clothes or eating, children with Down's syndrome need much more repeated practice than most children.

At a train station where the people and cars are relatively few, Chih-ping's mother lets him carry a bookbag on his back and walk by himself. Every day the mother and son take the train from Patuto school in Taipei so that he can get better treatment and education.

Children with Down's Syndrome lack the ability to think logically, but they can remember. Hsiao- sung, a second grader, can already write Arabic numerals.

Hsiao-sung has been naughty and upset his sister. Now his palms will be hit in punishment. (photo by Pu Hua-chih)

The 25-year-old Hsieh Yun-chi has a strong sense of rhythm. Not only can she dance elegantly to the music, she can also conduct those playing the instruments.

After becoming familiar with the steps of a process, people with Down's Syndrome will do a task to the letter, being scrupulous about every detail. They are suitable for doing simple and regular work. (photo by Diago Chiu)

This large ball is important in early treatment. It helps to strengthen the muscles of the child's neck, waist, back, etc.