1. Overview

Established: March 15. 1993 in Beijing
Founder: Ms. Tian Huiping (mother of a boy with autism)

STARS AND RAIN was founded in 1993 by a parent and is China’s first non-governmental educational organization to serve children with autism. The name "Stars and Rain", comes after an American movie “Rainman”, which raised public awareness of autism, and a nickname “children of stars”, which Taiwanese people fondly call their children with autism.

Vision and Mission of Stars and Rain

Parent training-- our unique service model has been tailored to conditions in China, which include:

Lack of social services for children with autism. Family is the most important (almost the only) source of care and education. ( Parents need to be educators.)
Lack of adequate services and community-based service providers. ( In seeking help parents usually have to go far from home. Our target groups are from all parts of China.)
No social security system. Parents have to work to secure a future for their disabled children and themselves. (Due to job constraints, it is hard for families to take a course that lasts longer than 11 weeks.)

2. Founder TIan Huiping- A Personal Journey

Founder and director of XXY, mother of a child with autism (son born in 1985)

Resume of Tian Huiping

When I knew my son had autism

My son was born on November 1. 1985. It was a time when China had just opened up and life begun to improve. Like every other mother, I had all the hopes for my son and wished him all the best in the world.

I studied German and used to work as a university teacher in Chongqing, and I loved my job. When my son was five months old, I got the opportunity to study public administration in Germany for two years. I was so happy, and I had the best dreams – I would be the happiest mother in the world, I would have them all, my career and my family.

But when I returned, the first blow came. I found my two-and-half-year-old son not able to speak no matter what I did. I tried everything to get him to talk, but all ended in failure. I was completely at loss. Unable to believe the worst, I hoped for miracles.

In autumn 1989 the hard truth hit when I took my boy to see a psychiatrist in Chongqing and learned that my son was suffering from a rare condition called autism. I can never forget that conversation, which changed my life for ever. "I'm sure, your son is autistic," the doctor said kindly. This is the first time I heard the word autism. "Is this condition curable?" "No because its causes are still unknown." "What will then become of my son in the future?" my heart sank. "I don’t know, I’m sorry. I have never come across an adult case, but from what I learned in America, I am afraid to say your son will never be able to live an independent life. "

I was devastated by the diagnosis and didn't know what to do. I kept thinking of the hardship in the days ahead for my little boy. I felt terribly lonely with my helpless situation – no one knew how to help children like my son, and no one could understand mothers like me. I felt that all my dreams were shattered. In the following three years, I was seriously depressed, seeing little hope for the future.

My journey to stars

As I made more inquiries about autism, I got hold of a book published in Taiwan. I learned that autism was diagnosed in Taiwan twenty years earlier, where they call those children with autism “Children of Stars". Hope re-emerged as I read that right educational treatment could set autistic children like my son on a path of positive development. This was the first time I learned about the word "therapy".

There was no time to be wasted after I had found out what I could do to help my son and equally importantly, to help myself. I was convinced that the only way to help ourselves was to help others like us, children with the same condition and mothers like me. I wanted to create a support network for all children like my son, give them a voice in the society and offer them the opportunity to live a life with dignity. The thought was therapeutically soothing and made my life meaningful again. I went to Beijing in February 1993 and started the first non-governmental educational program for autistic children in China based on what I had learned from the book.

Once I set my foot on this journey, my life was never the same again. I would love to lead a quiet family life. I enjoy cooking and doing household chores, and I enjoy spending time at home with my family. I loved my job as a university professor, which offered flexible work hours and a life style of peace. But I had to give us all of that. To leave my job was particularly hard. Not only did I give up a way of life, but also all the financial security that went with it, my apartment, the health insurance and retirement benefits.

As the head of a non-governmental organization for people with disability in China, I have no guaranteed income. To keep our doors open to those suffering from autism, I have to constantly face challenges, financially and professionally. But I know what I have to do, and I am happy because I can find no better way to live with my autistic son. After all these eight years, I want to describe my experience as “a journey to stars”.

“First” Experience on my way of becoming a leader of a NGO

First Day
I started my class in a private kindergarten in Chaoyang District, Beijing with six autistic children from age four to ten. There were six of us, two parents, and four young women freshly graduated from the Children Education School which taught nothing about autism". It was a very exhausting day as we could barely keep up with the children, who were running around the beds, desks and chairs in the room. We couldn’t keep them still for even two minutes. The young teachers were totally at loss and looked up to me for what to do. I was surprised to discover how different each autistic child was! My knowledge of my son was not enough to understand all of them.

First MoveTwo months after I started the class, the owner of the kindergarten told me to leave the premise because my class did not make any money and never would! I understood his position – kindergartens like any private company must make money to survive, but my class was a different kind. I packed all my belongings in a carton box and loaded it on the rear rack of my bike. Accompanied by my pupils’ parents, I pushed my bike out of the gate. Feeling completely at loss, I was dazed in the sun, not knowing where I could go. Since then I moved another four times, but the sense of displacement was so strong, that I felt that I was moving even in my dreams.

First DonationTwo months after our second move in November 1994, I was running out of money and worried about my next rent for the forty-four-square-meter room in the China Rehabilitation Center for Deaf Children, costing RMB1,000 a month. I had no idea of where I could get money to continue when I received a call from Mr. Shao Guanchu in Hong Kong. Mr. Shao told me that he had read an article in "the China South Morning Post" about my story, and would like to offer me some financial support. I was so happy and asked him where the money came from. He told me that Hong Kong Round Table was a club made of volunteers who donate money to support good charitable causes. Mr. Shao’s support taught me fundraising for the first time.

3. History of Stars and Rain

1) Boarding Service (March-August 1993)

When Stars and Rain was founded in 1993, there had been no existing service model in China for reference. In addition to the financial difficulty, Stars and Rain faced tremendous professional challenges:

We started our first class of six children as a boarding school where parents brought their children to school on Monday and picked them up on Saturday afternoon. We had six staff serving the six children, and we were teachers during the day and nannies during the night. Although we encouraged parents to come to the class, it was not a requirement. Nevertheless, their participation became the seed of our parent-focused training program in the later years.

2) Beginning of Parents Participation (September 93-September 95)

In September 1993, Stars and Rain was forced to move to another location for the third time, where the landlord forbade overnight stay on the premise. Our classes had to be restricted to day-care only. I noticed that the children were difficult with us after a weekend or holiday break. We realized that the children’s family life strongly influenced their behavior, and parents’ involvement in the training would directly impact the children’s progress.

We decided to give the parents daily homework and establish parent’s diary, a daily account of their children’s behavior at home. We also held teacher/parent meeting on a biweekly basis and required all parents to attend. These measures were our first attempt of systematical parent training. We helped parents understand autism and made them realize that to hand over their child to a professional institution was not sufficient and their involvement was crucial for their children to achieve long-term success.

3) Beginning of Parent-Focused Training (October 95-January 98)

As Stars and Rain became known, we received more applications from all over China, but limited by our space and staff, we were not able to offer places to all of them. We also worried how parents from other cities could cope with the program financially in a long term.

To resolve these problems, we changed the program from an open-ended one to a finite term of three months and held four terms per year to lower the parent’s financial burden. During the three-month period, we required parents to attend the class with their children and focused our training on parents to teach their children themselves. The role of our teachers shifted to overseeing the process, to demonstrate, guide and correct the parents teaching. We expanded the previous individual therapy program to each family, and parents must follow our teacher’s guidance to implement the program. After the three-month program, parents would receive a family training plan based on the evaluation of the term. After the family left our school, we administered a six-month follow-up program to monitor their progress. After the six months, the parent and the child could choose to return to our school for one-week re-evaluation and test.

4) Professional Standard Established (February 98-present)

In February 1997 with the support of donations we managed to buy a house in a village in the southeast Chaoyang District, where our present facility is located. After Tian Huiping’s visit to Eden Services in New Jersey, USA, we completed our curriculum of ABA (Applied Behavior Analysis) training.

4. Achievement and Challenges

March 15. 2003 Stars and Rain celebrated its 10th Year Anniversary

Challenges for Stars and Rain

Poor professional resources :

Lack of related higher education (research and teacher training / certification system for teachers of autism)

Weak financial support :

Lack of governmental funding and weak social philanthropy system.

Lack of legal guarantee for:

Social services. Families have to self-pay for their children’s education, including remedial services. Limited ability to pay means that Stars and Rain can not charge high tuition fees, which are our main source of revenue.
Universal compulsory education for people with disabilities. This means that parent view Stars and Rain as their children’s only chance for improvement and perhaps even cure ( which it is not).

Limited Awareness about:

Autism diagnosis and the need for educational treatment.
Respect of the right of all children to education (school enrollment rejection)

Challenges Stars and Rain is facing---

1. Long waiting list. Critical need for expansion of services.

2. Need to develop continuing services for older students.