Accompanied by children with autism for 20 years, Zhang Yan became one of the earliest parents to promote social attention to children with autism and promote the establishment of a social support system
Accompanying children with autism changes from trying to accepting
On March 30, Zhang Yan was playing table tennis with Leyu in the community where Zhang Yan lived.
Zhang Yan is showing Le Yu's paintings.
On March 30th, Le Yu held a picture of the little golden bull for his aunt.
Zhang Yan will record every day's activity schedule on the whiteboard at home, and let Le Yu write down the matching feelings or content.
Le Yu, a young man in Beijing, is 23 years old and was diagnosed with autism 20 years ago.
After the diagnosis, his mother Zhang Yan took care of Le Yu at home.
In the long years of care, Zhang Yan has also become one of the earliest parents who promoted social attention to children with autism and promoted the establishment of a social support system.
On the eve of "World Autism Day" on April 20, Zhang Yan said in an interview with a reporter from the Beijing News that she was gratified that over the past decade or so, the society's acceptance of people with autism has increased significantly.
However, social support is still insufficient in terms of the placement of autistic adults.
Accompanying his son becomes the "work" of a lifetime
Zhang Yan's house is located in a residential area on the East Fourth Ring Road in Beijing. The furnishings in the house are very Chinese, and Zhang Yan keeps them spotlessly clean. A bunch of white flowers in front of the windowsill bloom in the warm spring sun.
"Le Yu, come here quickly and call sister." Zhang Yan reminded his son to say hello to the reporter.
Hearing his mother's call, Le Yu walked out of the back room, his posture a little uncoordinated.
He looked at the reporter, waited for a while, and the unclear "sister" came out from his throat.
Le Yu, 23 years old this year, is already a young man, wearing a black sportswear, thin body and delicate face.
Le Yu was diagnosed with autism 20 years ago. Since then, staying with his son has become Zhang Yan's life's "work".
There is a big white board on the wall of Zhang Yan's house. A small windmill is decorated in one corner of the white board. Two rows of words are written on the white board with black pen. One row is a documentary that Le Yu and his mother watched the other day. There is time to watch; one row is the name of the reporter, next to it is written "Be a guest at home".
Zhang Yan said that in order for Le Yu to know the schedule of each day's activities clearly, she would record it on the whiteboard.
At the same time, let Le Yu write the feelings or content that matched these activities beside these records.
For example, next to the movie record, Le Yu wrote "good-looking", and next to "Be a Guest at Home", Le Yu wrote "Welcome".
"Good-looking" and "welcome", for a 23-year-old ordinary young man, there is no writing problem, but for autistic people like Le Yu, writing, even simple "up" and "down" It takes a long practice process.
Practicing writing has therefore become a skill for Le Yu to integrate into social life.
In the book "The Snail Does Not Give Up" written by Zhang Yan, Le Yu's seemingly crooked words-"The Snail Doesn't Give Up" are printed on his mother's book.
These five characters are Zhang Yanshu's name, and it is a mother's greatest love for her son with autism.
It's not easy to accept children differently
Zhang Yan has a kraft paper envelope with a lot of schedules for her and her husband to accompany Le Yu when she was a child to an educational institution to carry out a training program.
The earliest record sheet shows the time as 2002.
Today, these papers have been a little yellowish, but they still clearly write training items, such as expressing requirements in simple language, matching common objects, and so on.
These trainings made Le Yu really improved.
But what Zhang Yan expects is the behavior, self-care ability, language expression, and even IQ that ordinary children do. No matter how they train, Le Yu cannot achieve it.
As a mother, Zhang Yan can not only accompany her children to continue to "train", but also accept Le Yu's different facts.
But it is not easy.
In the book "The Snail Doesn't Give Up", Zhang Yan wrote this passage: "Seeing the child's blank gaze, seeing the child's weird movements, and then looking at the children around me, my heart is bleeding! Accept the child , It's really hard to do!"
However, life is still going on, and the only thing Zhang Yan can do is to work hard and try.
Slowly, Zhang Yan didn't use the word "training", but replaced it with "practice" with a more gentle meaning. In her book, she used "intervention".
During interviews, Zhang Yan sometimes appeared "training" once or twice, but she quickly corrected her "mistakes" with a shy smile, using "practice" or "intervention" instead.
The change in terms reflects Zhang Yan and the changes in the mentality of many parents of autistic people, and society is gradually paying attention to and caring for autistic people.
■ Dialogue
"Don't try to change the child, learn to accept"
Beijing News: After the child is diagnosed with autism, some parents may let their children through a series of rehabilitation training to make their children healthy, just like ordinary children, but the effect is often not ideal.
Do you have any suggestions for this?
Zhang Yan: When Le Yu was diagnosed as a child with autism 20 years ago, I, like many mothers of children, tried to change Le Yu and even heal Le Yu, letting him lie on his mother like a normal child. She acted like a baby in her arms, yelling "Mom, Mom".
Through a series of rehabilitation training, we hope to make Leyu what I want.
When Le Yu was a child, we also took a lot of detours, so I especially want to tell parents of children with autism not to try to change the children, learn to accept, otherwise the children will collapse and the parents will collapse.
Our children are just a little worse and slower than other children, and may not be as smart as other children.
We may teach children to use mobile phones ten, twenty, or even hundreds of times; teach them to write, other children may do it once, and they may also have hundreds of times, but this is our child.
Beijing News: What is the status of Le Yu now?
Zhang Yan: Le Yu is 23 years old. He can clearly complete the "task" according to my prompts. He is very quiet at home.
Every day Le Yu and I went to the supermarket to buy vegetables. I "directed" my son: "Le Yu, help me get a radish." "Le Yu, help my mother buy a cabbage." Le Yu became the family's "strong labor" and helped Mother took a bag full of ingredients home, and it was Le Yu's job to wash the dishes after eating. He went downstairs to throw away the garbage in the house at night.
I often joked with my friends that it’s fortunate for Le Yu, otherwise the dishes are so heavy, I don’t want to carry them by myself.
Beijing News: Children with autism are facing the problem of entering kindergarten and school. How did you solve it at that time?
Zhang Yan: When Le Yu was young, the social acceptance of children with autism was far worse than it is now.
Le Yu never went to kindergarten because the kindergarten at that time could not accept children like Le Yu.
When Le Yu was 6 years old, I thought that according to the policy of compulsory education, Le Yu could enter school.
I took my son to the nearest elementary school, which is also the nearest school for the children in the community, but the teacher did not accept Le Yu.
The teacher also sent us to a school far away from home, but in the same community. The conditions of that school were average, but the teachers also put Le Yu out of the door.
This makes me feel disappointed and desperate. The campus is a small society. Children with autism can only gradually adapt to social life if they have the opportunity to enter the campus, because after all, they cannot rely on their parents for the rest of their lives.
At this moment, my husband was sent to work in Shaoxing, Zhejiang.
I originally wanted to take my children to Shaoxing to relax, but I didn't expect Le Yu to walk into a Peizhi school here and adapt to the study and life here.
I planned to live for two to three months before returning to Beijing, but I didn't expect to live for 12 years.
Beijing News: Many parents of people with autism can almost be regarded as half experts. At the same time, they are also actively promoting the community to pay attention to and care for people with autism.
Zhang Yan: It is true.
During the period of living in Shaoxing, I participated in the policy advocacy of the parents of Chinese autistic people to promote the attention and care of the autistic people in the whole society.
The policy advocacy of parents of autistic people in China started in the 1990s.
Over the years since then, many CPPCC members and deputies to the National People’s Congress have submitted proposals and suggestions concerning family groups with autism and rehabilitation institutions to the “two sessions” across the country. This has promoted the government’s attention to the autistic group and also made the country self-sufficient. Parents of autistic people are encouraged and inspired.
In 2008, the Autism Committee of the Chinese Academy of Fine Arts was established in Beijing.
During the five years from 2008 to 2013 alone, through the channel of the China Disabled Persons’ Federation, the Autism Committee of the Chinese Academy of Fine Arts submitted 4 proposals for the “Two Sessions”.
In the same year, Dai Rong and Lu Ying, parents of children with autism in Guangzhou, launched the "Rong Ai Xing Xue Aid Project". This program provides special education assistants for autistic children entering ordinary schools to help them adapt to school life and integrate into the collective .
In 2016, the “two sessions” across the country received a number of proposals and proposals on autistic (autistic) groups. Among them, the Central Committee of Jiu San Society called for the establishment of a sound social support system for autistic groups at the National Committee of the Chinese People’s Political Consultative Conference in the name of a group. Covers the needs of the autistic (autistic) group in disease screening, teacher training, integrated education, adult care, rehabilitation subsidies, etc.
What is gratifying is that with the passage of time, the social support system for autistic people is gradually improving, and more and more children with autism are entering integrated schools to learn. We can feel the society's attention and attention to children with autism. Acceptance is rising.
Beijing News: Where can the increase in social attention be reflected?
Zhang Yan: Let me give you an example.
When Le Yu was 7 years old, I once took him and his colleague’s children back to Beijing by train. At that time, there was no high-speed rail or high-speed train. From Shaoxing to Beijing, I needed to sleep on the train overnight.
Perhaps the environment of the train is still too noisy and cramped. At night, Xiao Leyu suddenly lost control of his emotions and yelled in the carriage. No matter how much I coaxed, it didn't work.
After hearing the news, the conductor came and asked me what help I needed after learning about Le Yu's situation.
I felt that the child was too noisy and was afraid that it would affect the rest of other passengers.
Unexpectedly, the conductor understood me very well, not only did not accuse me and my children, but also took the initiative to evacuate all passengers in the entire carriage to other carriages.
In the process, none of the passengers complained, and none of the passengers looked strange or dissatisfied, and a man offered to stay and help me.
I am very touched by this incident so far, as I wrote in the book: "The road extends under our feet, and we continue to move forward, and we will create more beautiful and better worlds."
■ Sound
Improve the placement plan so that people with autism can do what they can
For many years, Liu Wa, director of the Special Education Editing and Publishing Center of China Publishing House, has been paying attention to the group of people with autism. In her opinion, compared with the placement of adolescents and adults with autism, the early stages of autism Intervention, that is, the intervention system for children with autism is relatively complete.
"In fact, it is only in the past few years that we have realized that the group of children who were diagnosed with autism earlier are entering the adult stage of their 20s and 30s. Therefore, their needs for employment and normal life are highlighted." Liu Wa said, also That is to say, if children with autism graduate from a school or ordinary school and complete the compulsory education, what should they do?
Liu Wa believes that adults with different degrees of autism should have different placement programs.
"For those with a relatively better degree, they should be given a chance to get a job, because work has a different meaning for everyone, and people with autism will have more needs in this area when they grow up." Liu Wa believes that the most ideal The state is that people with autism at a relatively low level have undergone certain training to take on work that suits their level of ability.
But the status quo is not optimistic.
In March of this year, China Good Public Welfare Platform and Beijing Xiaogeng Disability Foundation jointly organized a set of data at the seminar "Employment Services for the Mentally Disabled in the Epidemic: Current Situation, Challenges and Future": People with mental disability accounted for approximately China’s total 1.5% of the population, nearly 20 million people, there are about 200,000 people in Beijing alone.
Compared with the employment rate of about 30% for the mentally handicapped in Germany, the real domestic employment rate is only about 2%.
The reporter learned that most people with autism have varying degrees of mental disability, which makes their employment opportunities even slimmer.
How to change this status quo?
Liu Wa analyzed that the state has tax incentives for companies that accept disabled people, and many companies are also willing to recruit disabled people, but how the disabled should carry out their work after they are recruited is a problem that plagues companies.
Therefore, Liu Wa suggested that the competent department should provide corresponding guidance and professional support to these enterprises, so that the disabled can really get into the work position.
At the same time, Liu Wa said that it is indeed difficult for people with severe autism to achieve employment, so it is recommended that a certain degree of employment be achieved through government purchases of services.
In addition, she also called on more companies to join this field, paying attention to the content of employment for people with autism. “Some children have a good chance of working after early intervention and early and early preparation for future careers. From a social perspective, there should be more tolerance and beauty, so that people with autism can come out of their homes and let them participate in work within their capacity."
Beijing News reporter Wu Tingting
A08-A09 edition photography/Beijing News reporter Li Muyi