Love and patience open world for autistic
Print Edition
THE Rainbow Mother Workshop in the Luoyang No. 4 residential complex in Meilong Town is a second home for autistic children to paint, read and play piano under the watchful eyes of volunteers.
Zhang Canhong, founder of the workshop, is always full of smiles and positive energy. But as a mother of an autistic child, she knows the dark side of the mental disability.
“I want to spread hope to all the parents, like me and my husband, to let them know that autism is not the end of the world,” said Zhang.
Twenty-six years ago, then 34-year-old Zhang gave birth to a boy named Jiawei. The infant passed physical examinations with flying colors after birth, and Zhang said she was happiest mother in the world.
Then the glow faded. At age 2-and-a-half, Jiawei didn’t talk or communicate with anyone. He seemed isolated from the world.
Physicians at a children’s hospital tested the boy and eventually diagnosed him as autistic. Back then, not much research about the condition was available in China, and doctors had no systematic treatment plan to offer.
Zhang turned for help to a colleague whose relative was a doctor working in the United States. From him she learned details about the disability.
“My husband and I were devastated,” said Zhang. “We saw a boy with healthy limbs and beautiful eyes, but he was not as healthy as he appeared. Our hearts collapsed.”
But little Jiawei was unaware of the pain around him. He played with his pillow, stacked drinking water bottles to knock down and flipped through books, crying if a page was torn.
Today, Jiawei is a whole new person. He now can keep eye contact with people, make small talk, tend to his personal needs and even go out on his own. This progress came at a price for his mother, who devoted all her time and energy to drawing her son from his isolated world.
“I couldn’t choose what kind of child I had, but I could choose which attitude to take,” said Zhang. “So I chose to stay positive and to cultivate my son as much as I could.”
She quit a white-collar job and read up on autism. She tried various methods to get through to her son. Some worked, some didn’t.
Eventually she found that “scene simulation” was the best way forward. For example, when she tried to teach Jiawei about the identity of his father and mother, she and her husband would perform a mini-drama for him, repeated hundreds of time. They took the roles of children, calling one another “mom” and “dad.”
At first, Jiawei showed no reaction, but that didn’t stop the couple. They put aside their frustrations and persisted. One day, not long after Jiawei turned 6, he suddenly called them “mom” and “dad.” The couple burst into tears of joy.
But that was just the beginning. Zhang didn’t want her son cooped up at home forever, so she slowly began taking him out on small excursions, usually by bus.
It took eight years before Jiawei first went out on his own, at age 14.
“I took him out every day, and showed him traffic lights, where to walk and where to stop,” Zhang said. “In the beginning, we walked hand-in-hand, and then I slowly began releasing his hand for short periods. Autistic children are like computers without any programs installed. You have to input every program in their minds repeatedly until they learn how to do something.”
Like many autistic people, Jiawei has extraordinary memory. Wherever he goes out now, he can recount every detail of the route, like a GPS navigator.
During her long journey with Jiawei, Zhang got to know more families like her own. She gathered some of them together so that parents could exchange experiences and encourage each other to carry on.
That was how the Rainbow Mother Workshop came into being. In 2013, with her husband’s support, Zhang spent 20,000 yuan (US$2,888) to rent a 60-square-meter apartment in Meilong and began recruiting volunteers.
Last year, the workshop registered in Minhang District as a non-profit organization, and Zhang became deputy director of the Shanghai Autism Association. Parents of autistic children come from afar to meet Zhang and try to emulate her success.
To help more people, she created a chat group on WeChat for parents of autistic children. The group now has more than 400 members.
“Many people told me that they felt hopeless before they met families in similar situations,” said Zhang. “They felt that they were abandoned by the world and they were alone.
But in fact, they are never alone. Together we are stronger.”
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