Culture

Autistic son helps mom get a life

By Lian Mo (China Daily)
Updated: 2010-06-15 07:30

Tian Huiping, founder of China's first autistic patient aid organization, says her responsibility is heavy. ZOU HONG / CHINA DAILY

Germany's former first lady, Eva Luise Kohler, visited only one NGO during her five-day trip to China in May - Beijing Stars and Rain.

The organization was the first in China to help children with autism and their families.

Tian Huiping, its founder, has spent 17 years challenging the way society views children with the disorder, driven by her own haunting story.

Her interest began when a doctor explained to Tian why her 4-year-old son was different from other children.

She says it was the moment her life fell apart, before she put it back together again, stronger and better than ever.

It was 1989 and Tian was stunned by the news that the disorder had no cure.

That feeling of despair was unusual to Tian, who had been born into a senior cadre family. She had gone to college in 1977, the first year after the Cultural Revolution (1966-76), and was among the first generation of Chinese students to study aboard.

At the time she learned about her son's condition, Tian was a teacher with Chongqing Constructional Engineering College and had her future mapped out.

But in the six months that followed her conversation with the doctor, she lived in desperation and doubted the meaning of the life.

She remembers that she yelled at her mother: "As long as this kid lives, I am a total loser. My life is over."

She said she was full of blame for her son and felt life was not worth living.

During that difficult time, Tian learned that at least 400,000 children in China were autistic.

And in March 1993, she decided to try to make a difference by giving up her prestigious job to travel to Beijing with her son to start Beijing Stars and Rain in a private kindergarten.

She said the plan was to help other parents with autistic children.

"I did not know I was starting an NGO. I had to register with the Industrial and Commercial Bureau at that time, although I was starting a non-profit organization. It was not until years later that I learned that I was one of the first generation NGO founders in China," she said.

Tian started by living in a room under the stairs, like Harry Potter in the J.K. Rowling books, while the kindergarten got off the ground.

"Four graduates from normal schools joined me after I wheedled a bit to make them join in," she said.

At the time, she had no idea how long Stars and Rain would last or how it would evolve.

Within two months, things deteriorated when neighbors forced the kindergarten out of its space because they were afraid of the children and because the kindergarten's owner realized it was not going to make a profit.

"We only had six children in the beginning," she said. "But we had to move three times in the first half year. Autism was a word only known to pediatricians at that time. People did not understand or accept us."

But Tian was not about to give up. She used to tell her friends: "The Tian you know is dead. The one that is left is only the mother of Yang Tao (her son's name)."

In 1994, American Reader's Digest (Asia Edition) reproduced an article about Stars and Rain from the South China Morning Post and named Tian "Hero for Today". That was when Stars and Rain started to receive donations from foreign countries.

But still Tian did not feel at ease. "I had to be responsible for every teacher and every penny the donors gave us. That responsibility was heavy and serious," she said.

Today, the 53-year-old is officially retired from Stars and Rain but she still teaches eight hours a term on the insistence of the parents.

She said some of her most important work is with the parents. One of them once complained: "I do not understand. Why did this happen to me? Why is our child disabled? Both my husband and I are well educated. My husband's siblings graduated from Oxford and Columbia universities."

Tian said she became angry and asked: "So who do you think deserves a disabled child? If you think your education gives you the right to classify others, it would be better to be an illiterate. If you consider yourself elite, you need to learn that everyone is equal."

Tian said she once had the same sort of superiority complex but her son helped her see how ridiculous that was.

"Autistic children cannot be cured and they will not change. So we are the people who need to change. We need to change to be able to respect and accept those who are different and who are vulnerable."

Today, Stars and Rain has 29 staff members and five trustees. The organization has helped more than 6,000 families and given specific autism teaching training to 210 teachers from different parts in China. Many organizations have since followed its lead and offered help to autistic children and their families.

"I finally felt I had been successful when I handed Stars and Rain over," she said. "Some donors used to say that Stars and Rain was dependent on me but now it is not. It can run well without me."

Tian now enjoys a peaceful and quiet life with her son who she enjoys and appreciates very much. She said she came to realize several years ago that she was lucky to be the mother of an autistic child because her son brought meaning and abundance into her life.

China Daily