Helping the autistic lead more normal lives

When other parents may dream of their children being accepted to Tsinghua University, Zhang Canhong, mother of an autistic child, wishes her boy can manage by himself one day.

When Zhang Canhong gave birth to her son Jiawei at age 34, she felt her life was complete. The nurse told her he was a healthy, beautiful baby.

Two years later, in 1992, Zhang’s son was diagnosed with autism. Back then, it was unfamiliar territory.

“Autism was translated as ‘lonely symptom’ in Chinese,” said Zhang. “I took the term literally and asked if I should take my son outside more to make him more sociable.”

She said there was nothing too overtly wrong with her child, but there were telltale signs that something was amiss.

“He pointed at things with his fists, not his fingers,” she said, “and never looked us straight in the eye. He had trouble learning to speak. When I heard the diagnosis, I couldn’t even cry. I remember the weather that day was cold, and a piece of my heart went missing.”

But Zhang refused to feel ashamed of her child, as so many parents with autistic children did. She went looking for information on the disorder and possible treatments. When she learned there was no treatment for autism and that it’s a disability, not a disease, she quit her job and vowed to help her son live as normal a life as possible.

“When I was talking to someone on my sofa, I had to ask for their indulgence because I was always needing to keep an eye on my son,” said Zhang.

Helping the autistic lead more normal lives
Ti Gong

The Rainbow Mom Workshop hosts a variety of activities aimed at helping autistic children and their parents make the most out of life. The charity survives on donations and volunteers.

In 1998, she founded a support group for parents of autistic children. She had never heard of anyone with the same symptoms as her son, but in forming the group, she found others sharing the same fate. The first meeting of the group was held in her small apartment. Members have stayed in contact since then.

Zhang also started a hotline service and gave out a calling card, inviting anyone who needed help to contact her. She identified herself on the card as “mother of Jiawei and an enthusiastic parent.”

The support group expanded from five founding members to more than 900 contacts on Zhang’s WeChat account. In 2013, she spent 20,000 yuan (US$3,121) to rent an apartment where she started the Rainbow Mom Workshop, dedicated to helping autistic children and their families.

“I want to nurture the right attitude and understanding of autism,” she said. “Many parents send their autistic children to so-called rehabilitation centers, in the hope they will become ‘normal’ and can attend mainstream schools like other children. But it’s unrealistic and a waste of money. Teaching autistic children to tell colors or remember numbers isn’t rehabilitation. Teaching them self-care is what we should focus on.”

According to Zhang, some parents spend 700 yuan a day on rehabilitation centers and then realize they have been focusing on the wrong target. Zhang recalled one 18-year-old girl who was enrolled in rehabilitation but came away not knowing how to shower or brush her teeth.

Other parents may dream of their children being accepted to prestige schools like Tsinghua University or even Harvard, but Zhang’s goal is much more modest.

“My biggest wish is that my boy can manage by himself one day,” she said.

To that end, she has taught her son how to cross a street and how to take a bus.

Rainbow Mom Workshop registered in 2015, with five volunteer members. Donations come from businesses and parents. The workshop hosts free piano lessons, handicrafts lessons and outdoor family activities.

One of the most popular services is dental treatment. It’s hard for dentists to work on autistic children because most of them will yell and start scratching if a doctor comes close to their faces.

The Affiliated Stomatology Hospital of Tongji University has launched special services for autistic children.

“Sometimes a treatment can take as long as two hours because these patients have never been to a dentist before,” Zhang said.

Helping the autistic lead more normal lives
Ti Gong

The workshop recently became the focus of TV show, which is increasing public awareness and education about learning disabilities.

For her work and long years of dedication, Zhang’s family was honored with a “National Civilized Family” award last year. She flew to Beijing and shook hands with Chinese President Xi Jinping. The photo hangs in her workshop.

Her philosophy toward her son is unambiguous.

 “I’m going to die someday, so who will take care of my son then?” she asked. “I want a place dedicated to autistic children, staffed by professionals with patience and wisdom.”

That goal may be a long way off, she admitted, but she’s determined to stick it out until the end.

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