Books such as The Growing-up War, My Daughter Yu-li, and Maybe You Know My Kid are a by-product of mothers seeing the resistance of society to their specially challenged children.
The feelings of being isolated and unable to explain her situation led Li Ya-ching, the mother of a gifted child, "to have one real try" at describing the difficult years in which she and her child fought the world. She wrote to tell of her experience and to help children and parents with similar needs.
My Daughter Yu-li is Chao Cheng-ting's record of her daughter's growing up with Down's syndrome, a book which she wrote over a period of seven years. "I wanted to understand every stage Yu-li was going through-the problems and the reasons behind those problems-and by reflecting on them, to understand what her needs would be in the next stage." Life's laughter and tears, the disputes between she and her husband, their support for one another, and Yu-li's feelings, her frustrations, and her growth, all of these bits and pieces came together in this written record.
"Before we knew that Wei-wei was a hyperactive child, my husband and everyone else wondered about my child-rearing abilities. They thought I didn't know how to raise a child and that that was why the child was that way," says Ho Shan-hsin. Ho remembers when she bought Maybe You Know My Kid, a book written by the mother of a hyperactive child, while she was in the United States, "I read it straight through, my eyes clouded by tears several times. I just couldn't stop myself."
When she translated this book, it was originally just to give her husband to read, to prove that she wasn't unequal to the task of motherhood. Later, she decided to publish her translation so that more people would understand hyperactive children. "After too many hurts and too many tears, I can affirm that 'knowledge is power,'" she says.
"Different" books on motherhood
Li Ya-ching's The Growing-up War and Chao Cheng-ting's My Daughter Yu-li were coincidentally released at the same time, both of them coming out around Mother's Day this year. Ho Shan-hsin's translation of Maybe You Know My Kid came out last May.
There are many "mother books" and "father books" on the market. What makes the books mentioned above different is that they are not full of clever tips for raising children and infants. Instead, in two cases they are real-life accounts of mothers who stood up to and fought with mainstream society and traditional values. And the third is a translation by a mother who didn't know to whom she could turn for help locally and finally went to foreign information sources for aid.
Li Ya-ching, Chao Cheng-ting and Ho Shan-hsin are not professional writers. The main reason they got involved with publishing was their children. The three of them are mothers, one of a gifted child, one of a child with Down's syndrome, and one of a hyperactive child.
In traditional thinking, the bearing and raising of children is a woman's natural occupation. Most mothers give their all in caring for their husbands and raising their children. Even women who are gradually moving out of the house and into the working world do everything they can to meet the demands of both house and job.
Gaining strength from motherhood
"If I'd had a child that fit society's mold, perhaps I could have been more like other women and taken care of both a job and a family. But my child does not. As soon as he entered school, he threw his whole being into conflict with mainstream values. As a mother, I had no choice but to spend my time with him." (Excerpted from The Growing-up War.)
Tzung-han is a gifted child with an IQ of 180. The school he attended was unable to meet his educational needs and attending class was just boring for him. His teacher beat him everyday for forgetting to bring a handkerchief or toilet paper, or for losing things. He is a sensitive boy and the jealousy of his classmates hurt him. There was one classmate in his gifted class whose father constantly compared him with Tzung-han. One day, overcome by jealously, this boy told Tzung-han, "Why don't you die? If you were dead, I'd be the best."
From his first year of primary school, boredom, fear and sadness made Tzung-han reluctant to attend school. By the third grade, he had a full-blown school-phobia. He was anxious and depressed all day. He bit his nails. He had nightmares. He dawdled every morning, unwilling to go to school.
Taking their child out of school put Li through a difficult period with her husband. Her parents-in-law didn't understand her action and found it unforgivable. It was a lonely time for her. The boy's father, Tang Kuang-hwa, asked "What family's child doesn't grow up this way [facing problems at school]? Why is it that only our child can't attend school?" He feels that fathers always expect their children to be stronger in the face of adversity. "Rationally, I know you have to respect your child. But in actuality, traditional thinking still has a hold on my mind," he says.
Because of this, he and his wife argued daily and were constantly irritated with one another. "The most irritating thing was that it was hard to predict the outcome [of applying either of our ideas] and so it was impossible to say who was right and who was wrong," says Tang regretfully, remembering that difficult time.
At that time, Tang was completely unable to win acceptance and affection from his son. The tenseness of their relationship almost made it seem as if the two were always girt for battle. Feeling helpless and frustrated, Tang decided to make a full retreat, to teach his son by example-he went overseas to continue his education.
In order to avoid Tzung-han's grandparents' "concern" for their grandson becoming an inter-generational battle, Li bravely closed off the passage that joined their two homes for a period of time. This angered her in-laws, who couldn't understand her reasons for doing such a thing. They called her "unfilial." Li, however, believed that if she could, at sometime in the future, present the two of them with a more easily lovable grandchild, all the misunderstandings would be forgotten. In the end, she was right. Two years later her in-law troubles faded away as a bad dream does on awakening.
Admitting to mistakes
Wei-wei suffers from attention deficit disorder and hyperactivity. Since his early childhood, he has been impulsive and excitable, has had difficulty focusing his attention, and has been hard to discipline and teach. He was forever climbing about and banging into things and was covered from head to toe with bruises.
Attention deficit disorder is a kind of "hidden obstacle" which has no obvious symptoms and is difficult to diagnose. There is also little information about the condition available in Taiwan. For this reason, most people misunderstand these "disobedient" "bad children."
Ho Shan-hsin left her job doing marketing for the Taiwan Textiles Federation to be able to devote herself to Wei-wei. But Wei-wei was nonetheless in constant trouble, and in Ho's in-laws' eyes, the blame lay squarely on Ho's shoulders. They told her, "It's criminal the way you're raising our grandchild to be such a brat!" Her unreasonable in-laws even nagged at her husband, telling him, "You don't need this kind of wife. Leave her." Ho's unaware husband, Kuo Ping-teh, was oblivious to the censure his wife was undergoing, and just thought the child would grow out of it.
Remembering the day five years ago when Wei-wei was diagnosed as a hyperactive child by a doctor at National Taiwan University Hospital, Ho says, "I sat in the car and the tears just wouldn't stop falling, regretting the past, worrying about the future. . . . I was pained by the number of times our boy had been hit even though he was innocent. It hurt me that I had made so many wrong choices and that our son had been wrongly accused so many times. My husband, driving the car, didn't react at all."
Kuo Ping-teh says, "At that time, I had no idea what hyperactivity was, absolutely no idea how much of an influence it could have on a child."
Tears amidst laughter
It's hard to be a parent. It's even harder to be the parent of a "challenged" child. "I had thousands of grievances churning around inside my belly. I finally let people see a few of them," says Chao Cheng-ting, shaking her head and sighing.
Down's syndrome is a congenital chromosomal irregularity that carries with it a host of problems including mental retardation, weak musculature, organ ailments and chronic illnesses. Yu-li has been sick again and again, averaging one illness per month. And even for illnesses as insignificant as a cold, she has often had to stay in the hospital. Also, for children with mental handicaps, early training is extremely important. Down's syndrome is no exception. Yet, because support groups and the people they help have difficulty finding one another in Taiwan, families with Down's syndrome kids often have nowhere to go for help. A Down's-syndrome-kids support group established by parents to help other parents facing the same difficulties has been unable to get enlist the aid of major hospitals in tracking down victims and has been forced to search among the general public for people to help.
From the time Yu-li was an infant, her parents, Vincent Chang and Chao Chen-ting, took her from hospital to hospital and clinic to clinic. It's difficult to calculate the money, time and effort they spent. Being cheated has been a part of their experience. "We didn't know what we were doing when we started out. We've had to ask along the way, feeling our way as we go," says Chao.
Mother knows best
Perhaps it is because mothers tend to be with their children day and night while fathers, busy with their work, have less time with the kids. Perhaps it is just that men and women are different. Whatever the reason, it is usually the mother that first discovers that her child has a problem and who best understands the child's needs.
When her child needed her, Li Ya-ching quit her job as assistant chief of reporting at a newspaper and returned home to be a full-time mother.
After Tzung-han left school in the third grade, he was like a turtle that had retreated into its shell, spending all day at home with his computer and his books as his only friends. Fortunately, he met several wonderful people, including Yang Wen-kuei, a lecturer in National Taiwan Normal Uni-versity's counseling department, National Taiwan University professor of mathematics Chu Chien-cheng, and Chen Hung-ming, a teacher with the Caterpillar Foundation, who helped him rebuild his identity and gave him a direction.
After this, Tzung-han began to follow a self-study plan. He registered at school, but studied at home, returning to his school occasionally for tests. This continued until he graduated from middle school. At that time, although his scores were high enough to get into high school, admission to which is highly competitive in Taiwan, he didn't want a high-school diploma and quit school. Instead, he threw himself into the computer world he loved.
Following in the footsteps of Tzung-han was Tzung-hao, the second child. He, too, had a fear of corporal punishment, which turned into a rejection of school. Li Ya-ching was completely disappointed by the current "structured" system of education. In order to ensure that her second son had companions and learned how to mix with groups, and to help other children experiencing difficulties in a structured educational environment, Li, a law-school graduate, simply established her own school.
Three years ago, a group of similar-thinking parents succeeded in overcoming a number of difficulties and acquired a piece of land on which they established the Seedlings School.
The school, located in Wulai's Doll Valley, currently has 54 students and eight teachers. It applies a "no hitting, no scolding, independent study" educational philosophy.
Breaking the educational mold
Chao and Ho each fought the system, Chao for respect for children and Ho for kids rights.
"What takes one year to learn before the age of three takes ten years if learned after that age," says Chao. She says that for children with learning disabilities, early treatment and education is especially important, but in the past the government provided absolutely no aid of this sort.
After many years of strenuous effort on the part of parents of physically and mentally handicapped children, in April of this year revisions to the special education law were finally passed. The revisions push back the start of compulsory education for these children to the age of three. This provision won't be implemented for six years and even when it is, it will still encounter many obstacles. Chao nonetheless thinks its passage significant. She says, "At least it affirms the importance of pre-school education for mentally and physically handicapped kids."
No rejections?
Paradoxically, though the current educational system can't meet the needs of gifted students, it has nonetheless established guidelines that push students to study in school, limiting their self-study opportunities.
In the same way, this system is also unable to teach mentally retarded students or those with learning disabilities according to their needs. Instead, it pays "educational funds" to parents of moderately to severely retarded children to allow the parents to educate their kids themselves.
"Gifted children have the ability to find their own interests and direction. But for mentally retarded kids, self-study is equivalent to giving up on them," says Chao. She says that the kind of professional background, teaching materials and equipment necessary to educate retarded children can't be provided by parents.
In April of this year, the revisions to the special education law passed their third reading. These revisions explicitly state that schools cannot refuse entry to mentally retarded children. But while "schools can't refuse to admit mentally retarded students, they have other ways of not teaching them," says Chao. At its current stage, special education is still beset with problems.
In order to get Yu-li into primary school, Chao went everywhere looking for information on schools with special education classes. She even went to each school they were considering for Yu-li to "scout the terrain." Nonetheless, Yu-li's path to education has been fraught with setbacks.
At the outset, Yu-li was excited about entering primary school. But after only 10 days or so of classes, she began to fear going to school. The teacher, who had taught special education classes for more than 20 years, not only didn't follow the school's policy of educating students according to their individual needs, but also refused to teach students rudimentary skills for taking care of themselves. This teacher asked parents to make sure their children had had a bowel movement the night before coming to class because, "Teachers aren't here to wipe students' bottoms for them." Yu-li's teacher even went so far as to tell the child to her face, "Mongoloid children are stubborn. That's why Yu-li is stubborn." She also told her, "Only stupid children study in the special education class."
"Yu-li's first words every morning were to ask her father, 'Today's a holiday, isn't it?'" Finally, Yu-li's fear of the enormous pressure she felt from her teacher caused her to "pull a disappearing act" at school. Chao says that it was Yu-li's misfortune to have an unsuitable teacher. They talked to the school several times but school rules wouldn't allow her to change classes or to leave. In the end, Yu-li's parents were forced to take her out of school for a "long holiday."
"Bad" kids
Hyperactive kids have a problem that is not obvious from their appearance and, like gifted and Down's syndrome kids, they often have a hard time adapting to school.
Hyperactive kids are not mentally handicapped and most are assigned to regular classes at school. However, they are extremely excitable and have short attention spans. To ask them to sit quietly in a classroom for 40 or 50 minutes, to focus their attention for an entire class period, is to press them to do something that is beyond their abilities. For this reason, they are often viewed by teachers as "bad eggs" or troublemakers.
"There are too many examples to list of hyperactive kids being tied to their chairs, having their mouths taped shut, being made to stand for long periods as punishment, or even receiving corporal punishment to the point of injury," says Ho. She says that one time she had to go to school after dark to pick up her son. "The teachers had already gone home and there was no one on the entire campus. But my son was still half squatting [a position teachers use to punish students] in the classroom, shaking [from exhaustion]." She says heatedly that the next day the teacher actually told her, "You yourself haven't taught your child what you should and you come up with this kind of excuse, this nonsense about hyperactivity!"
More than a year ago, an organization to help hyperactive children was established. The group usually helps in cases where hyperactive children are being abused at school. Ho says that the group is very low-key and very careful for two reasons. First, they are afraid the school might label the kids, thus inhibiting their future studies. Second, they want to avoid giving people the impression that the group is trying to stir up trouble.
Ho also went one step further, organizing a public hearing to talk with educational authorities. She hopes that they will set up "Hyperactive Children Resource Classes" at some schools.
She recommends letting hyperactive kids first attend the resource classes. When they have resolved their study problems and are more able to fit in, they would be put into regular classes where they would be accompanied by a special education teacher until they had adapted. She feels that this could immediately reduce the burden on teachers for the time being. It is also a plausible way to deal with hyperactive kids' special needs.
You can't betray your kids
Faced with a values system that allows no choices, even the wisest of mothers can't help but be confused and anxious, and can't help but make some compromises. In addition, our society doesn't teach parents how to accept children who are "different"; it lacks the resources and the channels to reach parents. Thus parents, out of fear and simply not knowing what to do, occasionally "betray" their kids.
In the past, in order to avoid having people talk about her and to let them know she was "teaching" her child, when Wei-wei behaved inappropriately in public, Ho hit him in front of other people. "It was only later that I realized that it was a congenital problem that made my child unable to control himself. Hitting him not only didn't help matters, it damaged his self-esteem and created psychological problems." Ho says that now she doesn't hit Wei-wei or make her own child suffer out of concern for what other people think.
Li Ya-ching says, "When Tzung-han turned against going to school, I said to him, 'Let's try it together!'" Li says that at the beginning, she wanted to make some sort of compromise with prevailing values and force Tzung-han back to school because she was afraid. What would she do if her child was different from other children?
"The thing I most often heard from my son at that time was 'You lied to me!'" She describes with heartache how her ceaseless efforts to get her son back to school destroyed her years of effort to instill in him a love of self and respect for others almost overnight.
The results of "betraying" her child cost Li a lot. "I spent three years slowly bringing my child out of his fear of violence and corporal punishment," says Li.
Good luck amidst bad
Yu-li, Tzung-han, and Wei-wei are fortunate in that they each have a strong-willed mother, a mother who would not crumple in the face of social pressures.
"My child is lucky in that his mother has the ability to take him down a different road," says Li. "I just want him to know that in this world there is someone who will always care for him, who will never give up on him, who will accept his pace, and who will always be there with a helping hand when he needs it."
"Why is it Yu-li's fate to be a Down's syndrome child? Why is it her fate to be our child?" Chao thinks, "There is a reason. I just don't know what it is yet, that's all!"
"I don't like it when people say how wonderful we are. We didn't have a choice. We were compelled to do things this way," says Yu-li's father Vincent Chang. "I just think you can't betray your child."
Learning from their kids
"Our child has opened up new doors for us," says Ho. She never thought she would be a part of a group to help the handicapped or be fighting for the rights of hyperactive kids.
Ho says that the reason she has been able to devote herself so completely to her child and to even establish an aid group to help other parents of hyperactive kids is that her husband has made sure their family faces no financial difficulties.
The mother who cried before has now not only wiped away her tears, but one year ago set up the Hyperactive Children's Association of the ROC.
Kuo Ping-teh completely supports his wife's activities with the association. He says, "We don't want other families with the same problem to get stuck in the same patch of mud." Kuo says that with this in mind, he is willing to put his all into supporting the family financially, and to take on a larger portion of the housework. "The training my child has put me through has changed me from a male chauvinist into a modern, liberated man," he says with a laugh.
Chao, who was once known as "Little Chili," reformed her volatile temper after she had Yu-li. "Yu-li gave me a different way of looking at life. Seeing all the difficulties she must deal with, I realized that everything is not simply a matter of course," she says. "People need to be soft-hearted. Only then can they respond to circumstances. Only then can they be tolerant and forgiving."
Chao is one of the directors of the Down's Syndrome Association of the ROC. Her husband is a photographer. Whether at home or out in the world, the two always cooperate. They recently worked together to put on a traveling photographic exhibition entitled "We Are All One Family" which raised awareness about Down's syndrome.
And what of Li, who, as the mother of a genius, is the envy of many?
"Late at night I often thank God for giving me these two children. They help me understand more about myself and life. Having them, I finally understand what 'love' is. . . ." (Excerpted from The Growing-up War.)
The children's future
Tzung-han is now 16 years old and has his own computer company. His younger brother, Tzung-hao, has also graduated from the Seedlings School and begun middle school. Wei-wei is now in the fifth grade. His grades are excellent and last year he was even distinguished as a "Model Student." Yu-li's "long holiday" has ended and she has returned to school. Fortunately, the school has made some adjustments and she has a new teacher.
Perhaps there won't always be smooth sailing as they grow up, and in the future there may be many difficulties to overcome, but as Ho put it, "As long as my child and I are friends, as long as he feels like a part of our family, as long as he has the family's support, he will be a happy child."
Although mothers give their all to try to secure a place in society for their children, an individual's strength is limited. Moreover, people are social animals. Sooner or later, children must interact with society.
Somebody once asked, "Where is Yu-li's future?" Chao responded with great sincerity, "Wherever society's future is, that's where Yu-li's future is."
p.58
Ho Shan-hsin quit her job so she could be a full-time mother, devoting all of her time to her son Wei-wei. No longer thought of as "unqualified to be a mother," she has thrown herself into her work with a hyperactive-kids support group, helping families face the same difficulties she faced.
This is the behavior meter designed by Ho. When Wei-wei thinks before he acts or does something clever, his mother encourages him by giving him points.
p.60
Unable to keep up with her brilliant son Tzung-han who has an IQ of 180, Li Ya-ching just gives him her whole-hearted support.
p.61
"The educational system isn't good, yet all students are required to attend school. This isn't fair," says Tzung-hao, playing the role of a spokesman for primary school students in a short play put on by the Seedlings School.
p.62
With loving care from her parents, Yu-li is a bubbly, happy child, giving hope to other families with Down's Syndrome kids.
p.63
Mom is angry and for Yu-li, it's a case of "monkey see, monkey do." Children are natural mimics, so adults have to be careful about the example they are setting at all times.
p.64
Having graduated, Yu-li is full of confidence. Her parents, on the other hand, can't help but worry about the challenges of the next stage.
Unable to keep up with her brilliant son Tzung-han who has an IQ of 180, Li Ya-ching just gives him her whole-hearted support.
"The educational system isn't good, yet all students are required to attend school. This isn't fair," says Tzung-hao, playing the role of a spokesman for primary school students in a short play put on by the Seedlings School.
With loving care from her parents, Yu-li is a bubbly, happy child, giving hope to other families with Down's Syndrome kids.
Mom is angry and for Yu-li, it's a case of "monkey see, monkey do." Children are natural mimics, so adults have to be careful about the example they are setting at all times.
Having graduated, Yu-li is full of confidence. Her parents, on the other hand, can't help but worry about the challenges of the next stage.
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