▲ At the exhibition site, a desk with Qi Qiansheng was displayed, where the audience could reply to Qi Qiansheng (Southern Weekend reporter Liu Yixian/Photo)
Children with autism are poetically called "children from the stars", but for Qi Qiansheng, raising an autistic child is not poetic. From the 63 family letters he wrote to his brother, people saw the pain and struggle of a father, and began to worry about the autistic child who had lost his father.
When Qi Qiansheng was alive, he knew that he should let his son "break away from my 'wife' and enter that intricate and strange society." For he has and deserves to have lived much longer." But there was nothing he could do. The older he got, the more Qi Qiansheng worried about the future of his son after his death.
On the night of Qi Qiansheng's death, his son was sent to a nursing home, and was almost forgotten for 10 years. After 63 family deaths, the volunteers who visited found that he received good basic life care, but the environment of the nursing home was not suitable for the elderly autistic people.
This article was first published at Southern Weekend
Wen | Southern Weekend reporter Liu Yixian
Southern Weekend intern Wang Siyu
Responsible editor| Tan Chang
"Second brother: How is the situation? Thoughts. The body wants to pay more attention.
"My child has undergone some bad changes in the last six months: ... The mood is extremely unfavorable, shouting and shouting all day long, and coming to the street without noticing the faces of others. Repeated shouting, seen as 'crazy stupid' by some idlers. As long as he is awake, he can't stop moving...
"In this case, I have issued him a 'disability card', which may be useful in the future, and I have not yet checked the provisions of the rights of the disabled persons you listed. I'm not sure what kind of critical situation I will have one day, and once it does, the child will never understand what 'rescue' is, and the misery is self-evident..."
On December 31, 1999, on the night of the Millennium, Qi Qiansheng wrote a worried letter to his brother, telling about the plight of an elderly widow with an autistic child. He was 62 years old and living alone with his 11-year-old son in Changping, Beijing.
His son, Qi Xiaoming, suffers from autism. In the 63 family letters to his brother, Qi Qiansheng often revealed his inner anxiety: once he died, he did not know what his son's fate would be. This is also a common concern of many parents raising children with autism.
More than 20 years later, from January to March 2022, some of Qi Qiansheng's family letters to his brother were exhibited in a coffee shop in Shanghai. This is a rare exhibition of relics of ordinary people - Qi Qiansheng has been dead for 10 years, and in May 2021, after the death of his brother Qi Qiansheng, people found these letters while sorting out the relics.
Flipping through 63 family letters, the earliest one was written in 1981, the handwriting is neat and clear, and the last one was written in 2007, and the handwriting is gradually sloppy and difficult to read. From the letter, people saw the pain and struggle of a father raising an autistic child, and began to worry about the autistic child who had lost his father.
1
"My child is autistic"
When Qi Qiansheng was alive, he may not have imagined that the letter he wrote would enter the public eye from his brother's study.
In May 2021, Qi Qisheng, who lived in Shanghai, passed away. According to his will, the notary and the relics collator went to the door to count the relics, and two days later formed a 54-page list of relics.
The study is the focus of the collection of relics. Sika, the relic arranger, recalls that there was a bookcase without shelves, and bundles of packed books and paper were stacked on top of each other. The 63 letters were scattered in them, or sandwiched in books, and she opened them one by one to find them.
Sika handed the letter to the notary on site who was in charge of supervising the collection of the relics. Notary Ji Chen told Southern Weekend reporters that Qi Qisheng left the house to the caregiver who took care of him through a bequest maintenance agreement. The notary office needs to determine that there are no "double defects" among qi qisheng's heirs - lack of ability to work and no source of livelihood; if so, the law stipulates that the inheritance of the estate should take care of this part of the people.
So, while Sika was sorting out the relics, Ji Chen began to quickly go through the letters, looking for clues to potential other heirs.
One letter was particularly thick, with worn edges and a section folded out of the envelope. Ji Chen pulled out the letter, which was 12 pages long, and saw the first sentence of the letter: "This child of mine is 'autistic' not 'depressed' (if it is depression, that is great, in fact, it is not!). ) is lifelong. ”
Ji Chen's head "buzzed" a little, and he took a deep breath. He knew that Qi Qisheng had a younger brother, but he did not know that his brother had children, and the children were autistic.
Will this child named "Xiaoming" be the heir of Qi Qisheng? Ji Chen was anxious to find the child's information, where was he, and was he doing well? "It's a bit cruel, but for a notary, it's about determining whether the person is alive or dead."
The sorting out of relics continues, and more and more letters and photos are collected, gradually piecing together the story of Xiaoming and his father Qi Qiansheng.
Qi Qiansheng, born in 1937, was assigned to teach mathematics at the Beijing Railway Electrification School in 1958. The school is located in Nankou Town, Changping District, Beijing, about an hour and a half drive from the city.
His story begins with "loneliness.". "Now that we have reached the last moment of age, we would otherwise become a real lonely old man." Qi Qiansheng described it this way in a long letter in 1981. At that time, he was 44 years old and was trying to solve personal problems: asking for introductions, dating, falling in love, talking about marriage.
Qi Qiansheng told his brother that in the past, the most severe curse words were "cutting off children and grandchildren", which was a kind of prejudice, but ordinary people could not get rid of such a social environment. He still hoped to have a descendant, and let his brother help think of a way.
1988 was a very special year. He first wrote to his brother that he was married to the comrades in the rural areas of Shandong mentioned earlier, and his wife was 24 years old. In the same year, he was 51 years old and asked for his brother's advice when taking the name.
The correspondence has the joy of a new life, "the child is developing very well, almost two months old, very cute, very able to eat and make trouble." After getting married, Qi Qiansheng experienced a different place from single life - "worry", he went to shanghai brother to live for a few days, and he was anxious to go home.
But the real ordeal came. The wife, who developed systemic lupus erythematosus shortly after giving birth, was critically ill and died in 1994. Around this time, Qi Qiansheng found that the child was suffering from autism.
In the exhibition, according to the timeline of Qi Qiansheng's letters, some of the original letters are selected to present. (Southern Weekend reporter Liu Yixian/photo)
2
"Only I know he has great potential"
Autism, also known as autism disorder, is a disorder of mental development that originates in infancy and infancy. Because autistic people show unique behavioral characteristics since childhood, such as difficulty in understanding and expressing language, difficulty in establishing emotions with those around them, etc., people have given them a poetic name - children from the stars.
But for Qi Qiansheng, the process of raising an autistic child is not poetic.
Diagnosis of autism is not easy. At first, when his son was three or four years old, he still spoke unfavorably, and Qi Qiansheng thought that it was a language development delay. At that time, there was little understanding of autism in China, and many autistic babies were misdiagnosed as mental backwardness, ADHD, schizophrenia and so on. In the letter, Qi Qiansheng asked his brother several times to look for a pediatric doctor, especially "mental health".
Over time, developmental abnormalities become more pronounced. In 1997, when his son was 9 years old, Qi Qiansheng judged that he had a 90% chance of autism.
Qi Qiansheng's brother went to Professor Tao Guotai, the first child in the mainland to find and diagnose autism, and asked for consultation. After the letter was written, he did not seem to be able to calm his mood, and added a few scribbled words: "The child looks amazingly beautiful, and it feels very fun together, which is unfortunate!" He sent his brother a picture of his one-year-old child: a pair of eyes that were big and bright, and his face was round.
In the subsequent letter, Qi Qiansheng began to talk to his brother about the basic common sense of autism, and mentioned that the only way to recover was "training and education". He met "Star Rain", the first private educational institution in mainland China to serve autistic children and their families, and wrote a letter to its founder to learn how autistic children are trained.
In the past, when he was single, Qi Qiansheng's letters were mostly short, and occasionally there were bursts of life interest: on the train into the city, he heard someone playing a Paganini violin played by Menuhin, and he felt that it was really good, so he wrote to his brother to help find tapes and sheet music.
Since Qi Xiaoming was diagnosed with autism, such a brisk expression is almost invisible, and the time of Qi Qian's birth has been completely occupied by his son.
He wakes up at 5:30 every day and sends his son to a seat at a nearby ordinary elementary school at 7:45 a.m., where he picks him up after two hours of class.
In ordinary elementary school, my son's books were basically not opened, but once he came home with bruises in the corners of his eyes. After investigating, he learned that his son had been teased and injured by other children. "Little wolf cub", he scolded the child who bullied his son in the letter.
After 5 semesters, Qi Qiansheng took his son home. He thinks his son's attendance at ordinary primary school is "useless" because "the teachers there don't bother to urge" autistic children to learn.
"Only I know: he has great potential." Qi Qiansheng taught his son mathematics at home, and just began to add, subtract, multiply and divide at a one-hour progression every day. "According to the way others look at him, even if it is 1 + 1 = 2, he cannot know. But I was able to catch the discovery that he was still able to do elementary school mathematics to such an extent. This is what I consider to be my biggest and only training achievement. He wrote in a letter to his brother on the night of the Millennium.
Qi Qiansheng believes that learning to add, subtract, multiply and divide is "only one of the most basic survival abilities for his son, but it is far less important than language." Unfortunately, the son's language barrier is extremely large, and he "can't do anything about it."
He had been looking for a Peizhi school for special children, but changping district did not. Peizhi schools in other districts recruit foreign students, need nearly 30,000 yuan in sponsorship fees, and can not board. In 1999, he wrote to the Disabled Persons' Federation and received a reply: there is no autism in the regulations on disabled persons. It was not until 2006 that autism was first included in the category of mental disabilities.
In the letter, Qi Qiansheng confided that it was difficult for children with autism to go to school. (Southern Weekend reporter Liu Yixian/photo)
3
"The two of us are symbiotes"
Nankou Town, Changping District, is only eight kilometers away from Juyongguan, and if you look up, you can see the remnants of the Taihang Mountains in the distance, and in winter it is covered with thin snow.
It is an important military and railway town, and a hundred years ago, the Beijing-Zhang Railway stopped here. In the 1990s, several large state-owned enterprises continued the prosperity of the area, such as the Nankou Locomotive and Rolling Stock Machinery Factory, the Deer Brand Thermos Factory, the Glass Factory, the Beijing Steel Ring General Factory, etc., each of which had a large number of staff houses. The one-bedroom apartment where Qi Qiansheng lived was also in the residential area of the Nankou factory staff.
In the south mouth, Qi Qiansheng is very famous. People call him "Old Master", which means a learned and knowledgeable person. People who talk about him remember that he was highly myopic and wore thick lenses. Li Fuqiang, director of the neighborhood committee, once heard the teacher of the school say that Qi Qiansheng had a lot of research on mathematics, and even approached the mathematician Chen Jingrun, "just did not create that 'pearl'" (Chen Jingrun is known as picking the jewel in the crown of mathematics).
Neighbors all remember that "Old Master Lacquer" is very strange, he rarely takes Xiaoming out, and when he goes out, he always holds Xiaoming and "does not let go". When he buys things at the market, he only buys steamed buns, does not buy vegetables, and does not talk to people. "If there is no fire in the house, it must be a full meal," said an old worker in Nankou.
In a letter to his brother, Qi Qiansheng confided in the bitterness of "not opening fire": "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. For example, if a bowl is placed in a certain position on the table, when Qi Qiansheng moves the bowl to another position, Xiaoming will move the bowl "back and forth rapidly between these two positions, much like the so-called 'compulsive behavior' in psychiatry." If Bob fiddled with electricity and gas like this, it would be very dangerous, "so that I couldn't cook in the kitchen, so I had to buy and eat."
Jing Fengxiang, an old colleague, lives in the next building, and usually sees Xiaoming on the windowsill, waving his hands and shouting. "It's a pity that this child", Jing Fengxiang still feels that if Qi Qiansheng let Xiao Ming go out to contact people from an early age, and the language function develops well, it will not be like this.
Qi Qiansheng described his relationship with his son to his brother this way: "I myself seem to have become an 'object' within his 'jurisdiction'. Everything that opens and closes windows and windows, refrigerators, doors, drawers, toilets, etc. needs to 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 cover and so on. It's like 'losing your freedom'. ”
"I'm having trouble even getting around the city right now." Qi Qiansheng said, "The two of us are 'symbiotes'. ”
Qi Qiansheng knew that Xiaoming should be allowed to "break away from my 'wife' and enter that intricate and strange society." For he has and deserves to have lived much longer." But there was nothing he could do. The older he gets, the more worried He is about what he will do when he "goes": "His future, in my imagination, is such a tragic picture, what a picture it is: your own son or a member of the garbage called 'living people'!" And what a beautiful, moving child! ”
Qi Qiansheng wanted to find a place to settle his son. In the letter on the night of the millennium, he mentioned for the first time that he had sent Bob to a welfare home. "The other day× brother wrote to say: Let the children enter the 'welfare home' (if there is and can enter) in order to save their lives, but I have difficulty accepting this kind of practice emotionally and in terms of responsibility."
In fact, he later took Xiaoming to the nursing home several times. "Winter has come, summer has come, there must be three or four times." Meng Fanshui, the director of a local private nursing home, recalled to the Southern Weekend reporter that Xiaoming was seventeen or eighteen years old at the time, very tall, and had not yet gained weight. Qi Qiansheng should be shorter than one head and lead Xiao Ming in front. Both father and son were gray-headed, and their winter clothes looked polished by oil stains. They tried the meals of the nursing home and did not stay in the end.
Qi Qiansheng's concerns are very specific: his son'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 urging like the parents of autistic people, "that's very tiring."
Meng Fanshui understands his father's concerns: their home for the elderly is not specially set up for autistic patients, and various vulnerable groups such as widows, physically disabled people, and intellectually disabled people are accepted, and many people are reluctant to stay unless they have to. "An old man in the neighborhood came several times and did not check in, and finally after getting drunk, a person lay on the street and was sent by the police."
Meng Fanshui's nursing home, photo taken on February 15, 2022. (Southern Weekend reporter Liu Yixian/photo)
4
10 years of oblivion
What kind of situation Qi Qiansheng faced before his death is no longer known. In the crevice of his brother's bookcase, Sika found a "Basic Information Note of Comrade Qi Qiansheng", which recorded that he "died at home due to illness on September 9, 2011". On the night of his father's death, Qi Xiaoming was notified by the police of the Nankou police station and the personnel department of our school to send him to the ×× Welfare Institute in Nankou Town."
Some people think he died alone. Meng Fanshui heard that Qi Qiansheng had not been found for several days after his death, until the community came to the door to register for universal suffrage, and how to knock on the door should not be, did not feel wrong; Li Fuqiang, director of the neighborhood committee, said that Xiaoming shouted and shouted at the window for a few days, and the neighbors contacted the unit to open the door.
Jing Fengxiang was working in the personnel department of the Beijing Railway Electrification School at that time, responsible for the aftermath of Qi Qiansheng. She denied the above claims because the police had performed a physical autopsy and concluded that Qi Qiansheng had not been dead for a long time. She had been to the scene, and after the door opened, Qi Qiansheng was lying on the ground, and the room was in a mess; Xiaoming seemed to be unaware of what was happening, and there was a moment of silence in between, but soon began to be the same as before, waving his hands and shouting incessantly.
Xiao Ming was sent to the nursing home where Meng Fanshui was the president at 90 o'clock that night. Meng Fanshui remembered that he was so hungry that he shrugged, "Give him a few baked sweet potatoes, and eat it soon."
According to the tripartite consultation between the school, the community neighborhood committee, and the nursing home, Xiaoming was placed here. Jing Fengxiang said that before 2013, she visited Xiaoming several times and sent the pension issued by the school to the nursing home every month, "but this is also fixed, not much."
After that, it was a long 10 years.
In May 2021, Qi Qiansheng's brother passed away in Shanghai. After discovering Xiaoming's clue, notary Ji Chen called the nursing home. Then, he contacted volunteers at the Beijing Rong'ai Rongle Family Support Center for people with mental disabilities (hereinafter referred to as Rong'ai Rongle) and asked them to visit Xiaoming at the nursing home.
The first visit was on December 8, 2021, when the volunteers brought a set of XL casual clothes, but when Xiaoming put it on, they found that they should buy XXL codes. Xiaoming has grown to about 1.85 meters, and his weight is estimated to be more than 190 pounds, which is very strong. He lives in a triple room with heating, a table and a toilet with a communal toilet.
Meng Fanshui said that in the past ten years, almost no one has come to visit Xiaoming.
This forgetting is gradually showing signs. Sun Liwei, the chairman of Rong'ai Rongle, remembers that during the second visit, a volunteer asked "Xiaoming, where are you?" After hearing this, Xiaoming began to recite: "Qi Xiaoming, I am building × ×× room in Beijing South Exit..." He wrote while reciting, and some words could not be written, but stopped to think and wrote homophones. Immediately after that, he began to copy the words on the wrapping paper and picture book next to him, and wrote for nearly 40 minutes. Meng Fanshui and the staff of the nursing home were surprised that Xiaoming could write.
When the volunteers visited, the staff of the nursing home found that Qi Xiaoming could write. (Southern Weekend reporter Liu Yixian/photo)
The visit records of Rong Ai Rong Le are very meticulous, including the indoor and outdoor environment of the nursing home, whether Xiaoming's cohabitants have bullying problems, Xiaoming's hobbies, whether there are friends and so on. The volunteers found that Xiaoming's basic life care was good, but the environment of the nursing home was not suitable for an elderly autistic person like him.
"He should have some hard work at his age and had friends of the same age." Sun Liwei said. Of the 60 or 70 people living in the nursing home, only one was younger than Xiaoming and was close to an autistic condition. When the old people sat in the hall watching TV, Xiaoming sat far away, comparing his hands to his hands—this is his autistic stereotype.
There are many difficulties in this private nursing home, a caregiver has to care for more than twenty people, and there is no way to provide personalized services. Sun Liwei said that in the future, they will organize visits every month, give Xiaoming paper and pencil, evoke his sensory memory, and also bring some activities suitable for the mentally disabled to the nursing home.
Xiaoming's source of livelihood in the nursing home is mainly the living allowance for the disabled, which is more than 2,000 yuan per month, which can only cover the most basic care services. Qi Qiansheng left a deposit of more than 100,000 yuan, which has not been able to be used, and the community is trying to find a way to communicate with the court; a 60-square-meter house is handed over to the nursing home for decoration, and it has just been rented out in 2022, and about 10,000 yuan a year is subsidized to Xiaoming.
The inheritance of Qi Qiansheng's brother, Xiaoming has no right to inherit. After understanding the situation, the notary Ji Chen confirmed that Xiaoming, who received the living allowance for the disabled, did not lack a source of livelihood, and the inheritance would be acquired by the dependant in accordance with the bequest maintenance agreement.
On February 15, 2022, southern weekend reporters and volunteers met Xiaoming in the nursing home, and also saw the words he wrote - horizontal and vertical, no spacing, each stroke is very strong, the back of the paper seems to have been carved by a knife.
This time when he saw the stranger, Xiaoming did not talk much and did not make eye contact. The volunteer asked Bob if he wanted his dad? He replied "Daddy," just repeating the last two words of each sentence. With a pen and paper, he took it upon himself to start counting, from 1 to 10 to 20, counting and writing.
The staff in charge of nursing Xiaoming at the nursing home said that he usually likes to eat snacks and asks Xiaoming from time to time: "Do you want to eat?" Bob didn't respond, didn't look up, and was immersed in counting.
Under the guidance of volunteers, Qi Xiaoming wrote a letter. (Southern Weekend reporter Liu Yixian/photo)
5
"After we die, the people we love the most are still there"
After finding Xiaoming, Ji Chen and Sika's hearts landed. But they still want to do something.
Sika believes that the deceased is gone, and the relics are sorted out to make the living better alive. In this story, the autistic Xiaoming is the one who is still alive.
Of the 63 family letters that became a relic, nearly forty were related to the plight of raising autistic children. They consulted with the heirs of Qi Qisheng and exhibited these letters to let the loneliness and pain of the autistic family be seen, and at the same time improve Xiaoming's life through exhibition charity sales and public welfare fundraising.
After reading all the letters back and forth three times, Sika and the curator decided that the theme of the exhibition was "Letters." The exhibition is based at 42 Coffee Shop in Xinzhuang, Shanghai, an autism-friendly coffee shop that offers internships and employment opportunities for the elderly.
The location of the coffee shop is relatively remote and the traffic is not high. On January 15, 2022, the day of the "Letter" relics exhibition, Luo Yi's father came to the exhibition site and found that in addition to the staff, the audience was only a few people.
Relic finisher Sika at the "Letters" exhibition site. (Southern Weekend reporter Liu Yixian/photo)
Roy's dad is the father of a 24-year-old autistic man. He carefully read each letter and found that he had experienced all the difficulties mentioned in Qi Qiansheng's letter. The fate of the autistic family is so many times that "deep down, I resonate deeply with him." ”
In his last letter in 2007, Qi Qiansheng proposed the idea of living with his brother in Shanghai. "You are 'no queen', I am a 'post' is not used, due to the relationship of age once there is an 'urgent' physical problem can not be handled, it is unimaginable."
Two elderly people, both in their seventies, are unrealistic to live with autistic children who are almost twenty years old. Ke Luoyi's father understood the father's wishes, and he saw that Qi Qiansheng said at that age that he would go to school to take a little class (and also increase his income).
"After we die, the people we love the most are still there." Many parents of autistic people are stung by the moment of Qi Qiansheng's death. In the autistic community, they call themselves ×× dads, ×× moms, and don't call themselves by their first names. Children are the starting point for them to think about everything, and from the moment the child is diagnosed with autism, they begin to think about the situation of their children after their death, and they are always concerned.
"I'm stronger than him ,Qi Qiansheng,' and I've always acted." Loe's dad said. Several fathers believe that Xiaoming's living in the nursing home is not bad at the moment, "but that is the situation at the bottom of the pocket." They want to create a community suitable for the lives of children with autism, and are designing a mechanism for people, money, and living places to match. Once the mechanism works, children with autism can also lead a dignified life after the death of their parents.
The curator moved Lacquer's desk to the exhibition site. The desk was old, and the glass plate on the table was pressed with an undelivered reply letter. Those who came to the exhibition could sit down and reply to Qi Qiansheng with Qi Qiansheng's pen and ink and manuscript paper.
When replying to the letter, people will see that there is also a photo of The First Year of The Painted Xiaoming on the desktop. As described in Qi Qiansheng's letter, it was indeed a "stunningly beautiful" child.
On February 11, 2022, the parent of an autistic child listened to the letter reading aloud at the "Letters" exhibition. (Southern Weekend reporter Liu Yixian/photo)
(In the text, Sika and Ji Chen are pseudonyms)