A Life's Crusade

Abstract

Giving birth to a child is a life-transforming event for a parent. While this may seem to be obvious, it is nevertheless one of the most significant changes that can occur. In this article, the author will describe how her life was changed upon the birth of her son with cerebral palsy. Living in Shanghai, the People's Republic of China, she describes how she changed her entire life to provide services to her son, and subsequently, to many other children with cerebral palsy and other disabilities.

Gao Ya Li describes her reaction to her son's condition and her subsequent search for adequate community services for him. Her efforts lead her to research programs throughout China and Australia and to start her own program. She describes the difficulties she encountered and the people she met who assisted her in her desire to provide the best possible treatment for her son and other children with disabilities. Conductive education is the basis for the school's services and her quest to develop that approach is described.

This is a deeply personal account of one woman's crusade to help her own child. Through that need, she has established a school in Shanghai that has served over 300 children and their families. The Shanghai Bo Ai Children's Rehabilitation Center now provides on-going rehabilitation to over 60 children and families daily and enables these children to receive the early intervention needed to make a critical difference. The article serves as an educational and inspirational message to parents and professionals regarding what can be done in the People's Republic of China.

Keywords:

In the midst of the fast-paced throb of the burgeoning metropolis of Shanghai there exists on a quiet little alleyway a school for children with special needs that is known throughout the whole city. All children who come to this school are children with cerebral palsy. They are unable to walk, sit or even crawl. Their limbs are often rigid and they have different problems to overcome.

We have an endless flow of visitors to our school. Every time they see the children struggling to crawl along the ground, or to see the staff gently encouraging the children to move their tiny feet ahead just one tiny inch at a time, they ask with amazement “How did you end up doing this kind of work? Why are you doing this kind of work?!” What should be understood is that in 1996 our school was the first and only private centre in Shanghai specializing in the treatment of children with cerebral palsy. At that time Chinese society was totally ignorant about rehabilitation, about children with cerebral palsy. With questions like those above constantly being asked I often think back to the summer of 1990…

In 1990 I worked for a Chinese import/export corporation. This was considered a very good job at the time. However, something completely unexpected was about to throw my life and my career into turmoil. In the summer of 1990 I gave birth to my son. Like any other mother I was filled with joy and excitement. However, I was completely unaware of the tragedy that was awaiting me. When at seven months of age my son was unable to crawl or sit, he was diagnosed with cerebral palsy – I was shattered. I felt empty and the pain was so intense that it numbed my heart. My hopes and aspirations for my child all vanished. There only remained a sense of hopelessness and pain. It was only after a long period of introspection that I decided to do everything that I possibly could to save my child from a bleak future and to do everything in my power to minimize his disabilities. It was at this time that I began my long journey into uncharted waters. I went to nearly every hospital in Shanghai. With only very minor results I was forced to look elsewhere for medical treatment. All in all I spent around 4 years traveling around China to places like Changchun, Beijing, Nanjing, Wuhan and Shijiazhuang. I covered nearly half of China.

As time slipped away I needed to return to work. I came up with a plan: during the day I could put my son into a kindergarten while I went to work. In the evenings after work I could help him exercise. Although I tried, this plan did not work and I once again lost hope. Coincidentally, I learned from a neighbor that there was a woman at their factory who had a child with cerebral palsy and that no place would accept the child. Every day the woman would have to take her child to work with her. She had to be with him constantly as he grew up. Once again I was shocked. Having spent several years desperately trying to find a solution for my son's condition I had gained a relative understanding of the chronic condition of cerebral palsy. For many years now researchers have been working hard to try to find out how to help this special group of children and their families. Children with cerebral palsy are like all other children in that they need encouragement and stimulation right from birth. Early intervention can minimize the contractures and bad posture that these children can develop and can accelerate speech and intellectual development so that they are more likely to reach their full potential. Therefore childhood is the key time to implement various programs such as speech therapy, occupational therapy, physical therapy and education.

At present, we face the following challenges:

1. Our rehabilitation center as well as general standards is unable to adequately fulfill the varying needs of these children.

2. Rehabilitation for children with cerebral palsy is always short-term and not continuous as there must be a family member or person who can be dedicated full-time to the care of the child. For example, they are needed for rehabilitation centre or hospital visits.

3. There are very few kindergartens that accept children with physical disabilities. After treatment at a hospital or rehabilitation centre, most children with cerebral palsy have to stay at home to be cared for by their grandparents or a nanny. (Of course, such people are not skilled or experienced in caring for children with cerebral palsy.) Because of such limitations, children with cerebral palsy lose their best opportunity for rehabilitation.

Enabling children with cerebral palsy to live in special needs residential schools would greatly assist in implementing early intervention programs which would create a solid foundation for their physical, intellectual and language development as well as preventing or minimizing any psychological problems they might have. The idea of establishing such a special needs school gradually took shape in my mind.

As I was beginning to make plans for a special needs school I learned from a friend that the World Health Organization (‘WHO') Hong Kong Rehabilitation Organization and the Chinese Administrative Affairs Bureau was going to hold the first National “Children's Rehabilitation Training Workshop” in Hebei Province. Self-funded, I immediately left to attend this workshop. There I met a Canadian occupational therapist and an Irish instructor and child welfare workers from all parts of China. I was able to borrow some videotapes from these professionals. It was from these tapes that I first gained a basic understanding of conductive education. Through these tapes I was able to observe the experience of several decades of conductive education programs for children with cerebral palsy in Europe and Hong Kong. With the skills I also had attained from my several years of visiting rehabilitation centers around China, I was able to form my own concept of a rehabilitation centre. I was slowly gaining confidence.

In May 1995 I began to realize my dream. I used more than RMB30,000 of my own savings and borrowed more than that from close friends in order to rent a small, disused, centrally-located two-story building. I spent two months renovating. Just as the renovations were being finished, the landlord advised me that he had to rent the building to several large companies instead! When I heard this news I was devastated. Fortunately the landlord was a good person. He understood my situation completely. He not only compensated me in total, he even charged me a lower rent on the building in which the centre is now located. I am unable to describe how grateful I was because not only is the current location bigger, it is also more suited to the children's needs. What looked like a bleak situation turned out very well indeed. The place is larger and the compensation money was able to be used as start-up capital for the centre.

I went through many different avenues to find two nurses, a doctor, a teacher and several laid-off workers. Altogether I had seven staff members and they underwent a brief training program. On 1 April 1996 I obtained a government license for the centre and thus the Bo'ai Children's Rehabilitation Centre was officially established.

After establishing the centre I faced the largest problems yet which were: finding skilled workers; a lack of professional expertise; funding; a lack of community understanding. I had to blindly feel my way through these significant obstacles. At that time physiotherapy, occupational therapy, speech therapy and those kinds of disciplines were not offered at Chinese universities. There really was no expertise in relation to rehabilitation. In addition, hospitals had no neurologists or neurosurgeons and very few people skilled in physical rehabilitation. In addition, there was no in depth research into child psychology, children's education, physical rehabilitation, music therapy, etc.

Through reading Chinese and foreign material on child rehabilitation, using the knowledge I had gained at the workshop in Hebei, viewing the foreign instructional videos I'd been given and using the wealth of experience of Chinese provincial-level rehabilitation centers, I gradually developed a training plan for our rehabilitation centre. As we were the first private cerebral palsy centre in Shanghai, numerous newspapers and TV stations came to report on our centre. The Shanghai government and citizens, as well as many foreign friends, provided us with different kinds of help. A foreign lawyer working in Shanghai read about our story in a local newspaper and introduced his mother to us, a physiotherapist with more than forty years' experience treating children with cerebral palsy – who was visiting Shanghai at that time. Not long afterwards he funded me on a trip to study cerebral palsy centres in Melbourne, Australia. In beautiful Australia I visited close to ten special needs centers and schools for children, as well as a workshop for adults with cerebral palsy. I was able to observe modern rehabilitation facilities; learn about the latest theories in relation to children with disabilities; witness the community support for, and technological advances in, this area; and how successful the result of all this was. When I passed through Hong Kong on the way back to Shanghai I had arranged with the WHO Hong Kong Rehabilitation Organization to visit many special needs schools and rehabilitation centres in Hong Kong. The opportunity to observe cerebral palsy centres overseas made me see the significant gap between where we were and where other countries were. I also realized the great responsibility that I had and the difficult road that lay ahead. I was inspired to work hard to match, if not exceed, what others had done in this area.

Everything good in this world is the result of human wisdom and diligence. Moreover, in the end, humanity needs to resolve its own problems. The best way is for individuals to take initiative of their own destiny and challenges.

I brought back with me new concepts and threw myself into working hard and furiously.

There have been rapid changes in Shanghai during the past few years. There has also been a lot of progress in the area of child rehabilitation. There has been a gradual but significantly greater understanding of cerebral palsy in the general population and a greater understanding of the need for special needs organizations. Beginning in an environment of ignorance we have enabled people to accept, and moreover to help, children with cerebral palsy. A few kindergartens and schools have now established classes for children with special needs and there are now special needs schools that have classes for children with cerebral palsy. The Children's Hospital has also established a Rehabilitation Department and doctors are accepting physical rehabilitation theories; are in the process of implementing rehabilitation skills in relation to children with disabilities; there is increasing acceptance of educational theories; and, my centre's work is also slowly gaining society's acceptance. During the last six years around 300 children have received treatment and education at my centre. Among them, 40 children are now able to walk and therefore are able to attend supporting kindergartens and primary schools. The eldest child at my centre has already been accepted into a middle school. Every time I see a child, who had had to be carried into the centre, now stand up or walk independently, or see a magnificent smile on the face of a child at my centre, or see the sparkling tears of joy in a parent's eyes, this is my greatest joy. It is at these times that I know that it was all worth it.

Even though we have made the first steps in the area of rehabilitating children with disabilities and have attracted special attention from the community, it has been extremely difficult for a private centre such as ours to develop. It has been difficult because of the fact that China is a developing country; the level of the entire social welfare system in China is still not high; and the treatment of children with cerebral palsy has only just begun. There are many gaps in knowledge to be filled. We need to consolidate what we know, we need funding, we need specialist staff and we need community awareness and acceptance.

Through my efforts for children with cerebral palsy I have lost my former job and my marriage. However, there are many things for which I am grateful: Bo'ai Children's Rehabilitation Centre has helped so many children and their families; the centre is dedicated to helping these children; I know that it has been much better to have a centre like this than not; and the success of Bo'ai will mean that other such centres like this will be established. Right now in Shanghai other centres like mine are being established. Future generations of children with cerebral palsy will certainly be more fortunate than my son was.

I often think that a person's life is so temporary, fragile and insignificant. If a person is able in their life's journey to bring benefit to others, or to benefit society in some way, then their life can be fulfilling and powerful, worthwhile and blessed. I am determined to continue my work for the cause of children with disabilities.