Helping the autistic lead more normal lives
Print Edition
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鈥檚 son was diagnosed with autism. Back then, it was unfamiliar territory.
鈥淎utism was translated as 鈥榣onely symptom鈥 in Chinese,鈥 said Zhang. 鈥淚 took the term literally and asked if I should take my son outside more to make him more sociable.鈥
She said there was nothing too overtly wrong with her child, but there were telltale signs that something was amiss.
鈥淗e pointed at things with his fists, not his fingers,鈥 she said, 鈥渁nd never looked us straight in the eye. He had trouble learning to speak. When I heard the diagnosis, I couldn鈥檛 even cry. I remember the weather that day was cold, and a piece of my heart went missing.鈥
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鈥檚 a disability, not a disease, she quit her job and vowed to help her son live as normal a life as possible.
鈥淲hen 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,鈥 said Zhang.
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 鈥渕other of Jiawei and an enthusiastic parent.鈥
The support group expanded from five founding members to more than 900 contacts on Zhang鈥檚 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.
鈥淚 want to nurture the right attitude and understanding of autism,鈥 she said. 鈥淢any parents send their autistic children to so-called rehabilitation centers, in the hope they will become 鈥榥ormal鈥 and can attend mainstream schools like other children. But it鈥檚 unrealistic and a waste of money. Teaching autistic children to tell colors or remember numbers isn鈥檛 rehabilitation. Teaching them self-care is what we should focus on.鈥
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鈥檚 goal is much more modest.
鈥淢y biggest wish is that my boy can manage by himself one day,鈥 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鈥檚 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.
鈥淪ometimes a treatment can take as long as two hours because these patients have never been to a dentist before,鈥 Zhang said.
For her work and long years of dedication, Zhang鈥檚 family was honored with a 鈥淣ational Civilized Family鈥 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.
鈥淚鈥檓 going to die someday, so who will take care of my son then?鈥 she asked. 鈥淚 want a place dedicated to autistic children, staffed by professionals with patience and wisdom.鈥
That goal may be a long way off, she admitted, but she鈥檚 determined to stick it out until the end.
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