Parents in the prototype of the story of "Ocean Paradise": I am not a sad mother

In the imagination of the outside world, Tian Huiping once carried the label of strength, sacrifice, and sadness, "I am not a sad mother, never am." ”

The full text is 7919 words, and it takes about 14 minutes to read

▲ The Civil Code, which came into effect on January 1, 2021, added a guardianship system for the designation of wills. This means that Tian Huiping can choose a guardian for Yang Tao through a will. Peeled onion video production

Beijing News reporter Zhu Qinghua Video producer Qi Houlei Editor Chen Xiaoshu Proofreader Wu Xingfa

Tian Huiping is 65 years old, and her son is the first batch of children diagnosed with autism in Chinese mainland.

For more than 30 years, Tian Huiping almost "learned a profession for her son", and she founded Xingxingyu, China's first autism public welfare organization. In 2010, the story of her and her son Yang Tao was adapted into the movie Ocean Paradise.

Over the years, as the mother of an autistic person, Tian Huiping has always had a bottom line in her life, "I can't live only Yang Tao's mother, where is Tian Huiping?" ”

In 2017, she began traveling the world with her son, going to the United States, Europe, and South Africa. "I'm dead, what about my children", the question was not forgotten during the journey. Families with autism have explored questions for more than 30 years, and last September, Tian Huiping gave her own answer: She became the first parent of an autistic person in the country to sign a special needs trust.

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"I'm not a sad mom"

In the past year, the farthest distance that 37-year-old Yang Tao traveled alone was the garbage can 50 meters downstairs.

Every afternoon, he had to help his mother take out the garbage. Before going out, Tian Huiping matched him with a blue and white striped short sleeve, a pair of khaki slacks, white hole shoes and clean white socks.

After taking out the garbage, Yang Tao returned to his home on the fifth floor. He would rub his feet on the floor mat at the door, enter the door, wash his hands, and sit on the sofa exclusive to the living room, and Tian Huiping would reward him with hawthorn pieces as a "task" in return.

Yang Tao did not come back smoothly every time. One year, on the first day of the Chinese New Year, he threw away the access control card and the garbage when he took out the garbage, and stood outside the door of the unit at a loss. Tian Huiping found that her son had not returned for more than 10 minutes, went downstairs to look for Yang Tao, and found a blue access control circle in the trash can. The trash can was too deep, so Tian Huiping had to put it horizontally on the ground and burrow into the bucket to take it.

After that, when he went downstairs to take out the garbage, Yang Tao would tie a white key rope on his wrist and would also pinch the access control piece tightly with his fingers.

Tian Huiping, 65 years old, has short hair dyed chestnut, a thin body, a red knit cardigan with a black striped shirt underneath, and gray corduroy slacks underneath. It's her home dress, and even if no one knocks on the door for a week, she'll match it a day in advance, "not for anyone to see."

Her home is clean and tidy, "no piece of furniture without a story," a classically carved Chinese table in the living room that used to be her workbench, and a panda brand full-band old radio that was left by her parents in the 1950s.

The more than 20 pots of flowers on the south-facing balcony are Tian Huiping's "secret garden", and spring is coming, and the spring color inside the house is not inferior to the outside.

In the spring of 2020, when the NEW CROWN outbreak broke out, mother and son were traveling to the United States. Nucleic acid testing during the period of isolation back to China is an accident in Life for Yang Tao, "Now as long as he takes a cotton swab to let him open his mouth, he will lose control of his emotions."

After that, Yang Tao rarely went out again. It is difficult for outsiders to imagine what it would be like to live with an autistic son for more than a year. But Tian Huiping likes this kind of home life, and she describes these days as "calm and serene".

Every day, sleep until you wake up naturally, eat breakfast at 12 o'clock, milk coffee, mixed grains and vegetables, candles lit on the table, beautifully laid out.

On the afternoon of March 28, Yang Tao finished the work of moving flower pots on the terrace and sat down at the table. Tian Huiping soaked in Pu'er and gave Yang Tao a few pieces of cookies as a reward. Whenever it was time to eat, Yang Tao's expression would relax.

At 4 p.m., Tian Huiping asked Yang Tao to go into the kitchen to help choose bean horns, Yang Tao folded a long bean horn into two pieces, with a smile on her face, Tian Huiping picked up her mobile phone, took a video, and said in her mouth, "Look, how happy Han Tao is today, awesome!" ”

She will also lose her temper, "Yesterday it was sent", but what reason, has been forgotten. "We all have joys and sorrows, but I don't get mad at him because he's an autistic."

"My old girlfriend, they commented, Tian, we really didn't think you were a woman staying at home." In the imagination of the outside world, Tian Huiping once carried the label of strength, sacrifice, and sadness, "I am not a sad mother, never am." My relationship with Han Tao is: he is a part of me, and I am also a part of him. I am in the ideal state with my son now. He has his life, I have my life, and we both have a life together. Mutual, ordinary, calm, very everyday life. ”

▲ On March 28, 2022, Tian Huiping's mother and son prepared to drink afternoon tea. Beijing News reporter Zhu Qinghua photographed

"Is it fair to sacrifice me?"

Tian Huiping grew up in a well-off family. She was the first college entrance examination student after the Cultural Revolution, and entered the Sichuan Institute of Foreign Languages in 1978 to study German, and after graduation, she worked as a teacher at the Chongqing Institute of Architecture and Engineering. As the youngest daughter in the family, "I feel that the world exists to spoil me."

In 1986, Tian Huiping entrusted her newborn son to her parents and sent her to study in Germany. At that time, Yang Tao had just passed a hundred days. "The sad mood is fleeting, overwhelmed by the joy of going abroad."

Two years later, Tian Huiping returned to China. 3-year-old Yang Tao still can't say two words connected together. Tian Huiping tried her best to teach him to speak, bought a lot of children's song tapes for him to listen to, and let him learn to sing, but the results were not great. Later, Yang Tao went to kindergarten, and the problem became more obvious.

Tian Huiping took Yang Tao to go to the child's development screening, and after doing it, the doctor suggested that she go to the psychiatric department again. It was 1989, and there were not many hospitals in the country that could diagnose such conditions for children.

Tian Huiping still remembers the three questions she asked the doctor in the psychiatric department.

The first question is, "What the hell is wrong with my child?" ”

The doctor replied: "This is a very serious disease called infant autism spectrum disorder, referred to as autism for short. ”

The second question is, "How should this disease be treated?" ”

The doctor replied, "This disease cannot be cured because no one knows the cause of its occurrence." So far, the medical community has only had a few exploratory therapies. ”

The third question is, "What will happen to him in the future?" ”

The doctor replied: "If you want to take care of yourself, you basically can't do it." ”

Later, when the doctor said something, she couldn't hear it anymore. On that day, Tian Huiping's feeling was, "Life is collapsing, the sky is gray, life is gray." Many years later, she often told others, "Behind every autism diagnosis is a mother's broken dream."

She is a university teacher, a young returnee in the 80s of the last century, independent, confident, and the life that greets her should be the appearance of an intellectual in the ivory tower. And that day, "it was as if the dream of life had just been unveiled, and it was destroyed by life." ”

What Tian Huiping cannot accept is not that the child has a "problem", but that in the face of this problem, "my mother does not have the slightest ability to cope."

Other than that, she was more in the mood for anger. "Why my child?" I have been very proud since I was a child, not only because my parents are high-ranking cadres, but also because I have never been inferior to others, and I have never had a problem that Tian Huiping can't solve. ”

But this problem that Yang Tao gave her made her feel "what is incompetence" for the first time. If she wanted to give up Yang Tao, she was uneasy. Because of Yang Tao, she gave up the life that Tian Huiping should have, and she was not willing.

Not wanting to be just a "mother who accompanies Yang Tao", Tian Huiping fell into a whirlpool of contradictions. "I don't want a life that is always defeated by frustration, which is something that Tian Huiping is not used to."

When she was most desperate, she had thought of taking Yang Tao out of this world. She put sleeping pills in the porridge, and after boiling, her brain went blank, "I don't know what happened, I can't remember it today." Later, she lost her temper with Yang Tao, who knew nothing, "You made me not even have the right to die."

She found solace in philosophy and wrote a 200,000-word philosophical note: "Sacrifice him, the whole society will blame me, I will not forgive myself, but is it fair to sacrifice me?" ”

After calming down, Tian Huiping wrote a letter in German to a friend abroad, and the end of the letter was "The Tian you know has disappeared, and the one who survived is Yang Tao's mother."

▲ In the 1990s, Tian Huiping and Yang Tao. As a child, Yang Tao looked like an ordinary child. Beijing News reporter Zhu Qinghua photographed

"Have you ever thought about who will take care of him in the future?"

Tian Huiping's life trajectory has since turned.

She began searching everywhere for information about autism, but found nothing.

In 1992, a friend introduced her to Beijing for medical treatment, and peking university sixth hospital had just opened a children's ward for autism. "Loneliness is a state, how can it still be a disease?" She hopes to find the answer in Beijing.

The outpatient doctor approved yang Tao's autism diagnosis certificate and recommended that Yang Tao be hospitalized. She lit up a glimmer of hope, "Is it possible to cure it here?" ”

In the early 1990s, the field of autism in China was still blank. Autism is classified as a mental illness. Yang Tao's disability certificate reads psychosis. In fact, the three core symptoms of autism are: social communication disorders, language communication disorders, and rigid movements.

Yang Tao was admitted to the hospital, and at that time, medical institutions generally used drugs for the control of mental illness. After a few days of medication, Yang Tao became a little sluggish and often drooled, and Tian Huiping asked the doctor to stop the drug for him.

During her hospitalization, Tian Huiping saw a photocopy in the hospital library, a traditional pamphlet on behavioral training for children with autism. She tried to teach Yang Tao according to the method introduced in the book.

In the past, Yang Tao would not focus his eyes. According to the method in the book, Tian Huiping moved the command to Yang Tao's eyes, and at the same time, at the moment when his gaze touched the object, gave him a reward. After such a training was repeated several times, his brain made a connection between the act of eye-touching objects and rewards.

There is also the problem of going to the toilet, and ordinary children will inevitably experience the dilemma of being taken into the grass by their parents to solve the dilemma of a momentary emergency when they are young. The problem is that ordinary children grow up to know how to restrain themselves, but children with autism do not.

But Tian Huiping did not lock Yang Tao in a house where she could go to the toilet at any time. Her approach is to take advantage of the "stereotypical" nature of the autistic person and strictly define the place for him to behave in a specific way — taking off his pants can only occur on two occasions, one in the bedroom and the other in the toilet.

After studying for a while, Tian Huiping began to believe that she hoped to help Yang Tao gain a relatively dignified life by learning this technology. Not only that, but she also met many parents in similar situations in the hospital. "This discovery means a lot to me, I don't necessarily have to cure his illness, I just need to find a way to correct his behavior."

At that time, according to Yang Tao's diagnosis, the doctor suggested that Tian Huiping apply for a second-child permit, "so that you can also have the life experience of being a mother of a normal child." ”

The doctor also said: "Have you ever thought about it, who will take care of him (Yang Tao) in the future?" ”

The question of how autism "supports loneliness" has hovered in Tian Huiping's mind since then. "Having another child, entrusting the dignity of one life to another, and taking on the responsibility of taking care of your brother in the future before you are born, without even a day of ease."

Tian Huiping's way to solve the problem is to mobilize the whole society to pay attention to and respect children like Yang Tao.

More than two months later, Tian Huiping went through the discharge procedures and returned to her home in Chongqing. She wants to find another possibility, "no longer the traditional family sick I take care of alone", set up a special institution, and popularize this scientific method to more autistic parents.

The first thing to do was to quit her job as a college teacher who had already split the two-bedroom house at the time. Resignation was called smashing the "iron rice bowl" in that era, and everyone in the family opposed it.

But at that time, Tian Huiping felt that there was no shortage of excellent university teachers in the country, but there was a lack of a teacher who could teach autistic children, "At that time, I was so crazy."

▲ In 1995, Tian Huiping and Yang Tao were in Jiuzhaigou, and the photo is now placed in Tian Huiping's bedroom. Beijing News reporter Zhu Qinghua photographed

"Children of the Stars" learn to ride the bus

In 1993, Tian Huiping founded Xingxingyu in Beijing, and in the early days of its establishment, Xingxingyu's education was mainly aimed at parents, so that parents knew how to train children with autism.

Yang Tao followed Tian Huiping and underwent a year of training at the fledgling Xingxingyu. In the fall of 1994, 9-year-old Yang Tao was admitted as a first-year student at Haidian Peizhi Central School, a school specializing in receiving people with mental disabilities. In his first week of school, Tian Huiping was nervous and wondered if he could adapt to school life. "After all, this is the first social circle after he walked out of the family and out of the stars and rains."

After a week, her heart began to settle, and Yang Tao did not show strong discomfort in school, which meant that he took the first step. Tian Huiping began a new round of training - to adapt Yang Tao to the wider society.

▲ In the 1990s, Tian Huiping (pictured) and Xingxingyu volunteers took a group photo. Courtesy of respondents

Tian Huiping began to try to let Yang Tao ride the bus independently.

From taking the bus for the first time, understanding the small social space of the bus, accepting a series of unexpected accidents, to being able to ride independently, Yang Tao almost took 8 years.

When he was four or five years old, Yang Tao was in Chongqing, and there would always be someone on the bus to give him a ride. He thought he would have a seat as soon as he got in the car. If there is no empty seat, he will walk up to someone and "sit on someone's lap without saying a word."

Tian Huiping felt dangerous: If she grew up a little longer, what would be the consequences of doing so? Tian Huiping began to teach Yang Tao that he did not necessarily have to sit on the bus, let alone sit on others casually. "Han'er seemed to understand, of course, I grasped it tightly."

At the age of seven or eight, in Beijing, a new problem arose: as long as someone stood up and prepared to get off, Yang Tao would desperately squeeze through all the people next to him and sit in that seat. Such behavior made the people around him disgusted, "The bad is here, the light one stares at him twice, the heavy one says a word, and even more fiercely pushes him away." ”

These experiences not only made the proud Tian Huiping "tears flow into her stomach", but also scared Yang Tao into not knowing what was happening. But Tian Huiping understood that she must seize this opportunity to make him understand what the result of "grabbing a seat" would be.

Gradually, Yang Tao understood that he could only sit when the person in front of him stood up. It wasn't until one time, when he and another person were standing next to a seat, when the seat was vacant, Yang Tao actually waited a little, and when he was sure that the person was not sitting, he did not sit down. "I saw all this in my eyes, and Yang Tao learned to adapt to the behavior of public occasions!"

Learning to ride a bus is equally difficult. When waiting for the car, a car came, and Tian Huiping asked him: "How many cars are these?" Yang Tao could only repeat: "A few cars." ”

Therefore, Tian Huiping led him to the bus terminal, first let him know where the license plate was hanging, touch the license plate one by one, and let him read out "323" and "374". After that, almost every time he was taken to school, he had to ask him, "How many cars are coming?" ”

The next step was to train him to answer, "How many roads do you go to school?" "Sit 374," "323 is coming?" "Not on." This process lasted almost two years.

Beginning in the third year, Tian Huiping only sent to the station near the school, watching Yang Tao cross the overpass and cross the sidewalk. Later, Tian Huiping retreated further. When Yang Tao left in a car near her home, Tian Huiping waited by the public telephone, the time was almost up, she called and asked the school: Has Yang Tao arrived?

In case she didn't arrive, she was also mentally prepared and took a taxi to look for it along the way. "I understand that any attempt is risky, but I have to try. Because I love him, loving him should give him the life and right to be a human being. ”

There was also an accident, once, Yang Tao's car arrived as usual after school, Tian Huiping saw him standing at the door of the back car with his school bag, and thought to herself, "Han Tao is awesome!" The front two doors opened and closed again, the car started to leave, and Yang Tao did not get out of the car because the back door he was waiting for did not open. Tian Huiping chased and slapped the car door, shouting loudly, and the driver opened the back door after hearing the shouting.

The conductor said: "I asked him so many times, he didn't answer, why didn't he answer?" ”

Tian Huiping said to the conductor: "I just want to tell you that not all people can answer questions. ”

"I taught him everything, but unexpectedly, my son was standing in the doorway, and the conductor had to ask, 'Is it down?' If you don't agree, you won't open the door, which I didn't expect. ”

Tian Huiping could only continue training, imitating the Beijing conductor to speak and report to the platform, so that Yang Tao could answer and get off. After a month of repeated training, and then two or three weekends to repeatedly test the results, by the second half of the third grade, 12-year-old Yang Tao can carry his school bag to school and leave school.

In 1998, four years after Yang Tao went to school, a reporter wanted to film Tian Huiping sending Yang Tao to the bus station, and Tian Huiping said: "I don't send him to the station now." Every day after breakfast, he said goodbye to me at home and left on his own. The reporter asked if he could break an example for filming, and Tian Huiping agreed.

That day, at the station, "Tao'er seemed to be completely unaware of our existence, maybe he knew everything, but didn't know what 'relationship' it had with him." ”

There came a bus, not the one he was going to take, and he didn't move. The second car was the 374 road, and he went up. The car was crowded, and it was the rush hour of work in Beijing, and he could only stand at the door, hold the handle, and let himself stand firmly. At the moment when the car was about to start, Yang Tao turned his face to Tian Huiping and smiled happily, "In my opinion, there is even a little bit of pride." He waved at us to say goodbye. ”

▲ On March 28, 2022, Yang Tao chose bean horn and Tian Huiping recorded a video. Beijing News reporter Zhu Qinghua photographed

"All I can't live is Yang Tao's mother, where is Tian Huiping?"

In 2003, Yang Tao graduated from Peizhi School and entered an institution that provides community care for adults with mental disabilities, where he has a happy life.

At that time, Tian Huiping had the life of Tian Huiping, and Yang Tao had the life of Yang Tao. Mother and son only accompany each other on weekends.

In 2008, Tian Huiping retired. Over the years, there has always been a bottom line in her heart - "I can't only take care of my son in my life, I can't live only Yang Tao's mother, where is Tian Huiping?" ”

After the divorce, Tian Huiping was alone with her children for nearly 30 years. There was one line on her bucket list that had not been crossed out: a person living in Paris for a while. She was going to see Dumas's tomb, to Descartes' hometown. "I've been doing my homework for preparation for Paris for decades."

In March 2017, Tian Huiping went to Paris alone and stayed there for 8 days. When she left, she texted a friend: many places in this world are charming, and when I leave, I will be a little reluctant to leave, but Paris alone, let me leave when I am sad, I don't want to leave it, I love it.

These days belong to Tian Huiping herself. She said that Yang Tao's presence made her understand one thing: life does not wait.

"I'm dismissive of the people around me who are busy with this and then that, and now a lot of people around me say that I've lived a life they envy, and they always have a bunch of reasons not to live the life I've lived." I am seeing stitches and needles to fulfill my wishes. ”

After returning from Paris, the life pattern of Tian Huiping and Yang Tao changed again.

The cost of the care center rose from 3,000 yuan per month to 6,000 yuan, and Tian Huiping took Yang Tao home and took care of it herself.

Traveling again, Yang Tao is naturally within the planning.

In the summer of 2017, Tian Huiping and a few other friends took Yang Tao from Seattle and Portland to Yellowstone, then continued east, and finally ended in the Grand Canyon, Arizona, a journey that lasted 34 days.

"Many people are amazed that I dare to travel around the world with Yang Tao, who has autism, and imagine that Teacher Tian is too difficult. In fact, I am more worried, Yang Tao is good at raising a good belt, I am very relaxed, because I am enjoying the results of my perseverance behavior training. ”

For people with autism, the biggest difficulty of traveling is that they have a hard time adapting to unfamiliar environments and changes in the journey. Just like learning to ride a bus, Tian Huiping believes that the behavioral adaptability of autistic people should be learned in society.

For example, Yang Han does not like the security screening process at the airport. For Yang Tao, as soon as someone gave him more than three instructions in a short period of time, he would immediately become anxious. Once, when the staff at the airport asked to turn around and stretch his arms and legs, Yang Tao suddenly lost control, shouted loudly, and summoned the airport security guards.

"But that doesn't mean you won't take him on a plane from now on." In fact, after similar things happened a few times, Yang Tao began to naturally associate "going through security" with "going out to play".

Diet is of course also a big problem. "The stereotypical Han Of childhood, the ones he has never seen, what he hasn't eaten, what has changed shape, he can't touch them." The first time she took Yang Tao to the United States, Tian Huiping specially prepared a large bottle of homemade hot sauce; the second time she went to Austria and the Czech Republic with only a small bottle; and then only a little pepper powder was enough.

Along the way, most of the eyes Tian Huiping encountered were kind. Tickets are free, no queues... Now most of Yang Tao's behavior is like ordinary tourists, but Tian Huiping still routinely tells people, "My child is an autism, what may happen to him." ”

In this way, she wants yang Tao to appear where one more person hears "autism", which has become a professional habit of her life. "I never take Yang Tao as a secret, I don't hide it, I can take him to any public place, which is itself advocating."

▲ In 2017, Tian Huiping's mother and son took a group photo at the Norwegian Giant Tongue Rock. Beijing News reporter Zhu Qinghua photographed

Autism is isolated

"I'm dead, what about my children?" This is a topic that all parents of autism cannot avoid.

From beginning to end, Tian Huiping did not think of entrusting the child to anyone, "any bondage is not kind." If the big social security system cannot undertake the second half of Yang Tao's life, she must build her own micro-system and make a good puzzle for the second half of Yang Tao's life.

The puzzle consists of three parts: people, things, and money.

At first, her biggest problem was that she could not appoint a guardian, but only in the legal order. In this way, Yang Tao's half-sister is likely to become Yang Tao's guardian.

The Civil Code, which came into effect on 1 January 2021, adds a system of guardianship for the designation of wills. This means that Tian Huiping can choose a guardian for Yang Tao through a will.

On September 23 last year, Tian Huiping officially signed a trust agreement. Tian Huiping chose five natural persons familiar with Yang Tao as guardians. Everbright Trust is the role of property management. The Beijing Xiaogen Foundation for the Disabled and Director Xue Xiaolu act as her will supervisors to monitor whether the trust pays its fees in accordance with her will.

▲On September 23, 2021, Tian Huiping signed a special needs trust agreement. Courtesy of respondents

There is a guardianship agreement attached to the trust agreement, in which Tian Huiping will make a list of wishes, for example, Yang Tao has a birthday party once a year. After the guardian knows, the third-party hub agency is responsible for selecting the location and the way of celebration, the trust company is responsible for payment, and the supervisor is responsible for supervising the payment.

Tian Huiping said her main property is this 120-square-meter house in Tongzhou, Beijing. In addition, she also has a pension of more than 4,000 yuan per month, and sometimes there will be a certain labor fee when she goes out for training and lectures. At present, in Yang Tao's trust account, his father has also injected funds.

Not only Tian Huiping, but also Dai Rong, a parent of autistic people in Guangzhou, is also trying this "orphanage" method.

Dai Rong is worried that after the real implementation, the caregivers will not be able to fully understand the living habits of her son, so she began to shoot videos of her son's life every day to try to record his life to the greatest extent. "I write it very clearly on the list of wishes, but those are all words, in fact, you can't see some of his characteristics very vividly."

Dai Rong's son's list of wishes is rich: eating out twice a week and cooking for himself twice a week, and fitness or pedicure once a week. Get a haircut once a month, a K song once a season, and so on.

This trust framework is very complete, and all roles have been determined to be an organization. But Dai Rong admitted, "Now there is only a frame, no meat." She is willing to be a "guinea pig", "I want to give this framework a chance to trial and error, so that each character slowly becomes a qualified guardian and supervisor." 」 ”

▲Dai Rong's trust framework. Courtesy of respondents

On the afternoon of March 28, in Tongzhou, Beijing, Yang Tao listened to her mother's instructions to carry the flowerpot from the house to the terrace. Tian Huiping's newly purchased rose seeds emit small and tender green buds, waiting to receive the spring sunshine and rain dew. She had lumbar spine surgery and was unable to bend down to do physical work. Yang Tao became her "waist", her "muscles", and her "arms".

Tian Huiping remembers that many years ago, a Frenchman came to Beijing to interview her. "He asked me to take him on the subway, and in the subway he told me that he watched the movie and thought my life was a good story. I said at the time, it's a story for you, it's life for me. ”