The parents seemed a little nervous under the bright sun. They held their children tightly, afraid that something might happen to them. It is not easy for parents of disabled children to take their children outside. They must have the strength to watch out for their children, and they must also have the courage to face curious looks from strangers. However, it really feels good to sit in the warm sunlight. For this reason, Tzu Chi members from Kaohsiung held a Parent-Child Gratitude Party for parents with disabled children.

November 12, 1997, was a beautiful day. A children's drawing contest was held in one corner of the Hundred Banyan Garden at the Sun Yat-sen Memorial Hall in Kaohsiung, a city in southern Taiwan. Parents sat and quietly watched their children sketch with colored pencils.

At the other end of the garden, Tzu Chi members were busy preparing for another activity. At 9:00 a.m., a wave of automobiles drove through the entrance to the garden. Parents stepped out of their cars and then either carried their children in their arms or lifted them into wheelchairs. That was the first Parent-Child Gratitude Party held in Kaohsiung for disabled children and their parents.

Not Easy to Get Out

Having finished their sketching, active, healthy children ran around chasing each other. Occasionally their parents could be heard cautioning them not to run too far away. At the other end of the garden, the parents of the disabled children seemed a little nervous. They held their children tightly, afraid that something might happen to them. It is not easy for parents of disabled children to take their children outside. In addition to the necessity of hauling special equipment with them, they have to watch over their children carefully.

However, it really felt good to sit under the sunshine. The parents watched a series of elaborately designed programs, and the children stretched their arms and legs to the beat of music selected by a rehabilitation therapist. After that, the parents were somewhat more relaxed. They began to explain to their children the scene before them. The children might not have understood all that was said, but they felt excited in such a lively atmosphere.

What kinds of difficulties do these families encounter in bringing up disabled children? Some parents plucked up their courage and brought their children up onto the stage. They took the microphone and told about their difficulties and needs.

Lack of Support

Many mothers complained that when they took their children to see doctors for the first time, the doctors were indifferent and irresponsible, so that the parents themselves had to search blindly for help afterwards.

Mrs. Tien has a thirteen-year-old son. When he was a baby, he became seriously ill and lost his hearing. When Mrs. Tien took him to a hospital, the doctor told her that the boy's brain had been damaged by jaundice. She took her son to see another doctor, who told her that the boy was afflicted with cerebral palsy. Bewildered, she asked the doctor what could be done. He replied coldly, "Nothing." But she would not let it go at that, and she asked the doctor to give her the telephone number of another patient with the same disease so that she could contact the family to ask about their experience. The doctor refused, stating that the history of one patient could not be disclosed to another patient.

Mrs. Tien persisted and asked if there were any books about cerebral palsy which she could read. The doctor replied contemptuously that there were, but they were all in English, there were no translations, and he doubted whether she could read them. Mrs. Tien felt ashamed. She wished that she had studied English harder at school so that she could read the books. She began to spend a good deal of time reading in the library to improve her English and to learn about her son's condition.

Early Therapy

Tsai Mei-hui has an eleven-year-old son afflicted with cerebral palsy. She regrets that she didn't know the importance of early rehabilitation, so her son missed the most favorable period for rehabilitation, between the ages of one and six. Now he can only have compensatory rehabilitation to avoid further degeneration.

When the boy was eight months old, she took him to a large hospital for rehabilitation. They did not see the same doctor each time since most of the doctors in the outpatient department only worked part-time. There was no well-designed care plan for therapy. Furthermore, the therapists were actually interns from the nursing department. The children who were turned over to them for therapy would usually cry for an hour and then be given back to their parents. In the end, the children did not really get much rehabilitation.

Medical resources are not evenly distributed between the northern and southern parts of Taiwan. Most of the time, parents living in the south have to take their children to doctors in the north, especially Taipei, which is quite inconvenient. Disappointed with the medical facilities, Mei-hui sought alternative therapies such as acupuncture, chi kung (a kind of tai chi which teaches different methods of breathing), and participating in Buddhist prayer ceremonies and pilgrimages. In other words, she searched for anything which might help her son.

Most public schools for disabled children have too many restrictions. They do not accept children with severe cerebral palsy. The children they accept must be able to take care of their own daily needs, and children using wheelchairs must be accompanied by their parents. Private organizations are not as restrictive, but their funds and space are limited and they are unable to accept very many children.

The Right Concepts

When there is a disabled child in a family, not only does the child need to learn and to receive proper care, but the whole family has to learn how to help and get along with that child. However, many parents have a passive attitude. They simply think that all they have to do is to take good care of the child. They do not understand the importance of rehabilitation.

Periodic examinations and assessments of the child's functional level are important in early rehabilitation. Although early rehabilitation may not be able to improve his condition, it can often at least prevent him from regressing.

Mei-hui did not know that as a result of her son's brain damage, his tendons had stopped growing while his bones continued to grow. Consequently his tendons were over-stretched, which caused his hip joints to become dislocated. It was too late for rehabilitation to correct the problem, and the boy had to undergo an operation.

Parents are anxiously awaiting the establishment of the Tzu Chi Disabled Children's Rehabilitation Center. Looking after their children twenty-four hours a day without any sense of accomplishment, parents also need care and support. Most people have no knowledge or understanding of disabled children. They try to keep away from such children, afraid that they might harm their own children.

Traditional prejudices also affect the families of disabled children. One girl tried to commit suicide three times because she had a disabled brother. Her boyfriend's parents were afraid that her brother's condition was caused by a gene which she carried, or that her brother would become a heavy burden on her. Her wedding was cancelled.

Barrier-Free Facilities

Parents of disabled children have to put up with the curious looks and insensitive remarks of other people toward their children. In addition, public facilities are often not designed for safety. All these are reasons that make parents reluctant to take their disabled children out in public. Pushing her child in a wheelchair through the park, Mrs. Chang observed that many parks have barriers at their entrances to keep automobiles out. However, those same barriers also shut out disabled people. Some parks are paved with concrete, which can be a safety hazard for children with disabilities.

Furthermore, most play facilities are designed for children without disabilities. Mrs. Chang could only let her son watch other children play. The best her son could do was to pull himself up a few times on a horizontal bar to stretch his muscles.