A month ago, due to the impact of the epidemic, a special exhibition held in a café in Xinzhuang, Shanghai, had to be temporarily closed. But today (2 April), World Autism Day, many people think of it all invariably – about 63 family letters and an autistic child who "disappeared" for a decade.
In May 2021, Mr. Qi Qiansheng, an old gentleman in Shanghai, passed away, leaving behind 63 letters from his brother Qi Qiansheng in Beijing spanning 26 years. When the relics sorter and the notary read the letter, the sad and joyful story of the brother's family surfaced: Qi Qiansheng was 51 years old and had a son, but a few years later he found that the child had autism. Qi Qiansheng's life was followed by the pain, struggle and worries about the future of a father raising an autistic child until his death in 2011.
The envelopes of the 63 letters are arranged in chronological order, and the letters are written not only with brotherhood, work hobbies, and short parents, but also with the pain and struggle of a father of an autistic child. Photographed by Lei Zhiyuan
For ten years after Qi Qiansheng's death, the autistic child named Xiaoming "disappeared", and even the closest caregiver to his brother Qi Qiansheng at the end of his life never heard of Xiaoming's existence. If Xiaoming is still alive and is 34 years old this year, where is he now? How's it going? A search for and help for autistic children was carried out in Beijing and Shanghai among public welfare groups, parent organizations for autistic patients, and legal professionals...
In the social concern about people with autism, the mood of the masses is often touched by romantic names such as "Children from the Stars". The retrospection of the story of Qi Qiansheng and Xiaoming makes us have to pay attention to and face a heavier topic: when their parents are old and die, where should the "children from the stars" go?
Bob
The first time people looking for Xiaoming met him was in the office of the president of a nursing home in Nankou Town, Changping District, Beijing.
Sun Liwei, chairman of the Beijing Rongai Rongle Family Support Center for people with mental disabilities, is also the father of an autistic child and the first person to visit Xiaoming in a nursing home in ten years.
"Tall and clean." This is Sun Liwei's first impression of Xiaoming. Previously, many people who had read Qi Qiansheng's letters had sketched Xiaoming's appearance in their minds. His father did not hesitate to use the most beautiful words to describe his children: "very beautiful and very cute children", "children with big and bright eyes, beautiful eyebrows", "children look amazingly beautiful", "my very beautiful and very cute child"...
Now, Xiaoming has grown into a stout young man of about 1.85 meters and about 85 kilograms. Under the guidance of Dean Meng Fanshui, he vaguely answered several questions thrown by Sun Liwei, such as what was his name, where he used to live, etc., and there was no active communication.
This is a township nursing home located in the northern suburbs of Beijing, which is not large in scale and belongs to the private office assistance model. The first floor of the front and back buildings mainly houses the uninsured households, low-income households and widows and the elderly in the surrounding areas, while the second floor of the back building is inhabited by more than 40 disabled people, including Xiaoming. There are only 2 nurses in the third district where Xiaoming is located, and on average, one nurse has to take care of the diet and living of more than 20 disabled people.
In the nursing home, Xiaoming likes to sit in the back row of the public hall, always far away from the people watching TV in the front row, "playing with his hands alone, not watching TV, and not talking to people." "It is said that this is the state that people here most commonly see Xiaoming.
After the visit, Sun Liwei wrote such a paragraph in his visiting diary: "The overall state of the child is not bad, and the diet is acceptable. But there is no quality of life to speak of, monotonous and tedious. Life is basically self-reliant. No labor behavior, no cultivation. ”
A photo taken by Sun Liwei when he first visited Xiaoming. Today, Xiaoming has grown into a strong young man of 1.85 meters and about 190 pounds. Images courtesy of respondents
In the nursing home, Xiaoming likes to sit in the back row of the public hall, "playing with his hands alone, not watching TV, and not talking to people." Images were provided by respondents
Xiaoming's situation began to be paid more attention to, in addition to the caring people, a more stable group of attention came from the parents of some children with mental disabilities, who formed a voluntary visit group for parents who were in love and music, and spontaneously went to the nursing home to visit Xiaoming. Zhang Yan is one of them.
During that visit, she noticed that Xiaoming would rub his fingers quickly when he was irritable, "This is the norm for autistic children, and they have to look for a frequent sense of stimulation, just like the big blessing in the movie "Ocean Paradise". ”
On that day, Zhang Yan posed on the coffee table with gifts: pens, notebooks, calendars, picture books, a pamphlet printed with Letters from Qi Qiansheng and a photo album. She opened the photo album, pointed to the photo of Qi Qiansheng and his wife and told Xiaoming: "This is Daddy, this is Mommy." ”
"He looked at it somewhat blankly, as if completely unimpressed by the two smiling faces." Zhang Yan turned to the next page of the photo of Qi Qiansheng and Qi Qisheng, "This is Daddy, this is Uncle." ”
Younger brother Qi Qiansheng (left) and older brother Qi Qiansheng (right) in front of Tiananmen Square. Images courtesy of respondents
This time, Xiaoming's gaze finally focused on Qi Qiansheng's face, and then he gently spat out the two words that he might not have said in ten years: "Dad-Dad-Dad-"
"Bob, look at the pictures when you think of your father." Daddy will bless you. Dad loves you. Zhang Yan choked for a moment, reached out and gently put his arm around Xiao Ming's shoulder.
63 letters
It was a relay of love across Beijing and Shanghai — Sun Liwei went to visit Xiaoming after receiving a commission from Lin Yang (pseudonym), a notary at a notary office in a district of Shanghai. And this dusty story was accidentally salvaged, which also stemmed from a relics sorting in Shanghai.
In May 2021, Qi Qisheng passed away in Shanghai. The childless elderly man who lived alone under his knees drew up a bequest and maintenance agreement before his death, leaving the savings and real estate to an Anhui caregiver who took care of him for many years.
According to the Civil Code, the administrator of the estate shall perform the duties of clearing the estate and preparing the list of the estate. In early August, the notary office commissioned the finisher Sika (pseudonym) and her team to sort out the relics of Qisheng.
Sika sorts out the relics at the house of Kiki. Images courtesy of respondents
In Sika's memory, QiSheng's home was a house of more than 80 square meters, which still maintained the decoration of the 1980s and 1990s, with dim light, mottled walls and old furniture.
Qi Qisheng was a standard intellectual. Graduated from Peking University School of Medicine, he entered the Pathology Department of Shanghai Cancer Hospital, and before retiring, he was the deputy chief technician of Shanghai Cancer Research Institute and a senior expert in the field of experimental animal science. Because of this, the most abundant of his relics are books, newspapers, periodicals and various written materials. The site of relics sorting can not be sorted out one by one, and some people suggest that they be packed as a whole.
At this moment, Sika noticed the bookcase hidden in the far corner, and her intuition told her that there might be something inside. She walked to the cabinet, opened the cabinet door, and the dust filled the sky... Here Sika found a large number of letters scattered in the compartment and sandwiched in books, most of which came from the same person, Qi Qiansheng, the younger brother of Qi Qiansheng.
Qi Qiansheng, born in 1937, was assigned to the Beijing Railway Electrification School at the age of 21 and became a mathematics teacher. The school is in Nankou Town, Changping, Beijing, about an hour and a half drive from the city.
He wrote a total of 63 letters to his brother Qi Qisheng, spanning 26 years from 1981 to 2007. The words written between the lines not only have brotherhood, work hobbies, and parental shortness, but also connect the hardships and struggles of this man: work, blind date, marriage, and children, until later, they continue to endure the tricks and beatings of fate.
Lin Yang, who is in charge of the legal procedures for handling qi Qiansheng's inheritance, once saw in a "basic information of Comrade Qi Qiansheng" that Qi Xiaoming, the son of Qi Qiansheng, was sent to the Nankou Town Welfare Institute by the Nankou Town Police Station and the Personnel Department of our school on the night of his father's death.
Later, after several contacts and inquiries from Lin Yang, Xiaoming was finally found.
The old man who came to visit the exhibition and Sika exchanged their feelings after watching the exhibition. Photographed by Lei Zhiyuan
autism
"Loneliness" is the key word that runs through Qi Qiansheng's life. In one of the earliest letters, his story begins with "Loneliness.". In 1981, when Qi Qiansheng was 44 years old and was fretting about personal problems, he asked for introductions, blind dates, and dates, but he was repeatedly frustrated, so much so that he wrote in a letter to his brother: "Now (my) age has reached the last moment, otherwise I will become a real lonely old man." He also mentioned the expectation of "hoping to have a offspring," but "because (I)am too lonely and have no one to help in this regard, that's all." ”
"Loneliness" is the key word that runs through Qi Qiansheng's life. Photographed by Lei Zhiyuan
Things finally took a turn for the better after seven years. Qi Qiansheng first wrote to his brother that he was married to a 24-year-old female comrade from rural Shandong. In the same year, at the age of 51, he grew old again. The letters were filled with the joy of a new father: "I began to become a boy's father at 11:03 on September 6, and now the child has taken the name to ask for your opinion. "The child is developing very well, almost two months old, very cute, very able to eat and make trouble."
In 1988, Qi Qiansheng wrote to his brother that he was married to a 24-year-old female comrade in rural Shandong. In the same year, at the age of 51, he had a son. Photographed by Lei Zhiyuan
Judging from Qi Qiansheng's later experience, the time when the child was first born was undoubtedly the happiest time in his life. For the real tribulations will ensue.
The year after the birth of the child, Qi Qiansheng's wife fell ill with systemic lupus erythematosus and was in a critical condition. Around 1991, he became vaguely aware that "the child's language skills will develop later" and asked his brother in Shanghai to introduce him to a pediatrician. In 1994, his wife died, and his child Xiaoming was diagnosed with "autism" during that time.
Autism, also known as autism or autism disorder. It is a disorder of mental development that originates in infancy and early childhood. In the 2013 Psychiatric Diagnostic and Statistical Manual (Fifth Edition), the American Psychiatric Association listed common symptoms of people on the autism spectrum as having communication skills, such as inability to participate properly in conversations, frequent misreading of non-verbal language (body language, expressions, etc.), difficulty making friends with peers, over-reliance on routine, high sensitivity to environmental changes, and extreme attention to inappropriate objects.
These symptoms are manifested in Xiaoming.
When Xiaoming was 7 years old, Qi Qiansheng wrote in a letter to his brother: "This child is a very beautiful and very cute child, but his speaking ability is still unfavorable, and it seems that there is a great mental disorder. ”
When the child was 11 years old, Qi Qiansheng recounted in the letter the reason why the family could not open fire to cook: "Autistic people have a situation of 'their things cannot be moved where they are placed, and when they move, they lose their souls', and everything that is 'under their jurisdiction' seems to be 'frozen' and not allowed to be moved by others. If he moved the bowl on the table, Bob would move the bowl "back and forth between the two positions, much like what psychiatry calls 'compulsion.'" Qi Qiansheng believes that if Xiaoming also fiddles with electricity and gas like this, it will be very dangerous, "so that I can't cook in the kitchen, so I have to buy and eat."
What's worse is that Qi Qiansheng himself "seems to have become an 'item' within the scope of his (Xiaoming's) 'jurisdiction'." All doors and windows, refrigerators, doors, drawers, toilets, etc. must be told to do, otherwise it will not finish with me - tossing and turning, I read books, go to the toilet, in short, everything is controlled by him, such as reading books to make me lie on the bed, called 'rest', to go to the toilet must ask him to cover the toilet ring lid and so on. It's like 'losing your freedom'. ”
"I now have difficulty even walking around the city," Mr. Qi wrote, "and the two of us are 'symbiotes.'" ”
In his letter, he wrote with great sorrow again and again: "It is very sad that a child who looks so beautiful should turn out to be an autistic person. "This is a very beautiful and lovely child, but he is so unfortunate that he does not know it, and it is painful!"
Worry
When Xiaoming was 3 years old, Qi Qiansheng seemed to already know the situation he was going to face: "I have to 'struggle' all my life." Here, it seems that the word 'struggle' is more appropriate than the word 'struggle'! ”
Qi Qiansheng once lamented in the letter: "Regarding autism, because it is very rare, it is not understood by those who do not have such disasters in the general family." If you can ask someone about autism, you know... And I'm going to retire again, sick, and no one can really touch my difficulties. how! Fate! ”
On Qi Qisheng's desk was a photo of Xiaoming's first birthday. Photographed by Lei Zhiyuan
The hardships and sufferings of a father raising and caring for an autistic child alone are now unimaginable. What torments Qi Qiansheng even more is his concern about Xiaoming's future.
When Xiaoming was 10 years old, Qi Qiansheng sent Xiaoming to a nearby ordinary primary school. He gets up at 5:30 a.m. every morning, delivers Bob to his classroom seat at 7:45 a.m., and picks him up again at 11 a.m. Soon after, Qi Qiansheng found that "this kind of schooling is useless." Xiaoming didn't know what class was, what was an exam, and often didn't open the textbook when he picked him up, and the teacher "just threw him aside, didn't care, didn't bother." What makes Qi Qiansheng feel even more resentful is that Xiaoming is often teased and teased by other children as "idiots". That time, he found that the corners of Xiaoming's eyes had been bruised by someone, and his heart ached. "Children have no sense of protecting themselves at all... The problem of children can be said to be not only a small living space in the future, but also a 'no' living space, which makes me worried. ”
Like the parents of many autistic children, what Qi Qiansheng can do is to try to salvage his son from the abyss of fate one after another, hoping to find some way out for him, but he has to face failure after failure.
He wanted to send Xiaoming to the Peizhi School for special children, but at that time there was no such school in Changping District, and the Peizhi School in other districts only accepted children in the district, or needed a sponsorship of up to 30,000 yuan. In addition, he also worries that Peizhi School is only a "nursing school" for autistic children, and even if it can afford to pay high fees, there is no so-called teaching quality to speak of, but only "a shelter for a hopeless autistic children who are judged to be hopeless".
He wrote to the founder of Xingxingyu, the first private institution in China to provide education for autistic children and families, asking for advice on how to train children scientifically. He believes: "Children's autism may and must be greatly improved. "But then I suffered from not having enough financial support and had to give up."
In this way, Qi Qiansheng had to raise his children at home to educate himself. Every day, he "strongly promotes" Xiaoming's education, and finally trains Xiaoming's mathematics to the third grade level, but finds that because of the stereotypical thinking of autistic children, Xiaoming cannot use what he has learned in life...
The exhibition site is lined with lacquered desks, which makes people imagine the scene of his reply to his distant brother before his death. Photographed by Lei Zhiyuan
In the last years of his life, Qi Qiansheng never gave up looking for a place for his son to settle for the rest of his life.
In a letter on millennial night, he mentions for the first time that he sent Bob to a welfare home. "The other day, my brother wrote to say: Let the child enter the 'welfare home' (if there is one and can enter) in order to save his life, but I cannot accept this practice emotionally and in terms of responsibility."
His concerns are very specific: Xiaoming's language training has not progressed, there is no initiative, everything is called to do a little, eat a bite and run away, to shout and then run back to eat a bite, 11 years old is still the same. He doesn't think welfare workers can keep pushing like parents of autistic people because "it's very tiring."
"I'm not sure what kind of critical situation I will have one day, and once that happens, the child will never understand what 'rescue' is, and the misery is self-evident." "The child is very dependent on me. I could almost imagine that he wouldn't survive once he left me. I don't know what to do. Such hidden worries tormented the poor father all the time.
future
Qi Qiansheng's worries still happened. He died at home in September 2011. According to Lin Yang's understanding, when the police and community cadres broke through the door, Qi Qiansheng was lying on the ground, and the house was in a mess. Xiaoming was right next to him, but he didn't know anything about his father's death, and even "jumped around" on his body. When he saw someone come in, he waved his hands and kept shouting as he usually did when he saw strangers.
Before Qi Qian was born, Xiaoming's home was simple and chaotic, and the father and son had almost no quality of life to speak of. Images courtesy of respondents
That night, Xiaoming was sent to the nursing home where he is now. This has been followed by a decade of "disappearance".
"We are all very heartbroken after knowing Xiaoming's story, if we put it now, if he knows us. Most of this kind of thing (Qi Qiansheng's lonely family) will not happen. "Zhang Yan and the parents of autistic children deeply understand and sympathize with Qi Qiansheng, and no one can understand the helplessness and loneliness of the parents of autistic children better than them."
At the end of the year when autism was not yet known to most people, Qi Qiansheng asked his brother for help many times-
"I hope to meet some parents of children with autism and communicate with them." (1997)
"I was so isolated that I couldn't find anyone to 'say' these things... Can you give me some brains and find a 'mutual aid group' on my behalf may be the way to solve this problem." (February 2000)
"It would be much better if there was another 'helper', and there is nothing that can be done alone." (May 2000)
In his self-description, he also defines himself as "an autistic person in the 'broad sense'": "I am extremely introverted, timid, lonely, and unconfident, in fact I have been 'analyzing' myself for decades and fighting against this unhealthy state of mind." ”
Many years later, Qi Qiansheng's loneliness is finally seen and understood. "At that time, the reason why Qi Qiansheng was so lonely was only part of the reason, and more often than that, the society's awareness and acceptance of autism at that time was limited, and the lack of parent organization." Sun Liwei said.
Founded 10 years ago, the RongAi Rong Le Family Support Center for People with Mental Disabilities served by Sun Liwei is a national organization for parents of people with mental disabilities. In the past 20 years, parent mutual aid organizations like this one for the mentally handicapped have grown rapidly across the country.
According to the Blue Book on the Protection of Mentally Handicapped Persons in China, there are currently 25.8 million people with mental disabilities in the mainland, mainly including autism (autism), cerebral palsy, intellectual disability and Down syndrome, involving more than 80 million family members. And people with autism are growing at a rate of 220,000 per year. Parents formed an organization, from the beginning of the simple group warmth, spiritual support, to public welfare mutual assistance, to explore and call for the improvement of the care system for people with mental disabilities, including autism.
"We hope that one day if we are gone, the child will not only be able to live, but also live with quality." Sun Liwei said.
When they visited Xiaoming for the second time, they accidentally found that Xiaoming could write. "He can not only write neatly, but also very attentively, and the coordination of hands, brains and eyes is good." He wrote non-stop, copying the text on his phone and food bags, all the way for 40 minutes. Sun Liwei said, "Even the people in the nursing home are very surprised, for ten years, no one has ever known that Xiaoming can write, and there is no such condition to teach him to learn." ”
In this regard, volunteers and parents of autistic patients are not harsh, but regretful. "At the level of care services for autistic people (family self-help, social assistance, national support), Bob's situation belongs to the most basic national support. Under the conditions at that time, Xiaoming's ability to survive well was the most important, and the grass-roots nursing home really did not have such energy and professional ability to educate an autistic child. Lin Yang said.
Ten years later, the people in the nursing home discovered for the first time that Xiaoming could write and write quite attentively, writing for 40 minutes at a time. Images courtesy of respondents
Under the guidance of the volunteer parents, Xiaoming wrote a letter to his father, Qi Qisheng. Images courtesy of respondents
More and more people pay attention to the lack of guardianship of adults with mental disabilities has become a bottleneck to ensure the survival and development of this group. When autistic children grow up and graduate from special schools, when their parents go and die, who cares for children like Bob? This is the most urgent and difficult problem facing tens of millions of families.
Chen Rongdong, the person in charge of Shanghai Huiling, has always advocated a community-based service model, that is, the care of the mentally handicapped should also be like the "9073" model of the elderly, 3% of people enter the institution for centralized care, 7% of the people are placed in the community care, and 90% of the people can enjoy professional care and help at home. They set up day and night care points for autistic people in Shanghai. "Community families are the mainstream form of care abroad, generally subsidized by the government, where 4 to 6 people with mental disabilities live together, choose partners according to their own wishes, and establish long-term stable relationships, with professionals providing them with services. Although this model is more expensive, numerous studies have shown that it is the most quality of life model. In addition, the attempt to provide professional door-to-door services for families of autistic people also began last year.
"The reason why the story of Qi Qiansheng and Xiaoming touched people is that in addition to the true feelings of father and son, the care and care of adult autistic patients have been mentioned and concerned again." Lin Yang said, "Perhaps, this is the greater significance of this matter." ”
Volunteer parents are also actively planning and acting. In addition to donating money and cooperating with the nursing home to carry out activities and provide professional services, they also want to take Xiaoming to a nearby park to visit and play in the spring when the spring is in full bloom, so that he can see the world outside the nursing home.
(At the request of the interviewees, Lin Yang and Sika are pseudonyms)