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
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.