The mother of a autistic child is particularly difficult in the past two years

*This article is the original content of the "Sanlian Life Weekly". It is not allowed to reprint without authorization.

Intern reporter | Shi Zhenfang

Edit | Wang Haiyan

Huang Xi is the mother of a child (also known as autism), and is also the founder of Guiyang's first aging autism custody agency. The establishment of this institution was because she understood earlier than many parents of autistic children, and her daughter needs lifelong care and help. She hopes that in her own institution, old -fashioned people can take care of themselves, have the opportunity to integrate into the community, and even get some job opportunities, and live with dignity.

During the interview, she took 4 hours and told us that the difficulty of her founding agency was not easy: the bottom layer, poor family conditions, losses, poverty in other autistic families, the loss of staff, and the difficulties of students' habits ... … And the recent thing that almost defeated her was that the year before, when she was nearly 50 years old, she finally bought the first house in her life, Evergrande. As soon as the down payment was paid, Evergrande mines.

In the end, we suddenly realized that the hard -working institutions and trainees brought her, like the love of her family, became a reason for her persistence. The following is Huang Xi's narrative:

one

I have run an aging custody institution in Guiyang for almost 7 years, and I have been losing money and lost hundreds of thousands, but my child and my dad have always been optimistic. Our head?

Our autism custody agency should start with my daughter that my daughter was born in 2005. At 3 months, my daughter was diagnosed with congenital cataracts. At 6 months, artificial crystal implantation surgery was performed. At the age of 3, he was diagnosed with autism and mental development. At that time, the concept of autism was not popular in China. Therefore, doctors from Guizhou do not understand autism, let alone how to treat it.

At the beginning, I found it on the Internet. I needed to intervene for life. I also found that there was a local intervention agency in Guiyang, and I took the child. At that time, I thought that intervention was treatment, which could be cured. I decided to sell iron with my child's father, and to cure my daughter. The child's father was a truck driver. At that time, he earned 2,000 yuan a month, but intervened for one month, and the cost was close to 3,000 yuan. It was often a relative to help our lives.

It has been intervened in 2010, and the institution has experts to speak. I asked the expert: How much does it cost to cure my child? I remember the experts paused at the time and told me: This mother, a lot of things, you should look forward, I believe that the child will get better and better. But you say that you have to take a pot to sell iron, and you have to go on the way to treat children. I do n’t agree with this. I can understand your mood and hope that the child is cured, but at present, this effect is not possible.

"Ocean Paradise" stills

At that moment, I understood the meaning of "lifelong intervention", that is, this child needs help in his life. This incident hit me a lot, but her father and I finally changed my mentality. Her father said that he went to work hard, and I took my daughter to intervene with peace of mind.

In the 2010 Asian Paragraphic Games, there was a chorus performance at the opening ceremony. The performance members were all mothers of autistic children.

At that time, I found that some autistic children were already very big and still followed my mother. I asked these mothers: why go out so far, why take the child? A mother told me that because the child is old, emotional problems and behavior problems are more serious, there is nowhere to go, and can only be brought around. I suddenly realized that if my daughter had no place to receive it in the future, she was also inseparable from their parents.

Picture source: official website of Huiling Social Work Service Center

At that time in Guangzhou, I also visited one of the earliest public welfare organizations in China to serve the institutions of adult intellectual obstacles, and Hui Ling Headquarters was in Guangzhou. When I went to Guangzhou Huiling, I found that students lived in the community instead of being locked up like mental patients. This makes me very touching. Because at that time in Guizhou, there were no institutions that had served older orphan people. After graduating from a young agency at the age of 14 at the age of 14, autistic children could only go to the care institution or psychiatric hospital. I am also a parent. Of course, I do n’t want my daughter to be a beggar on the street or be located somewhere.

Stills of "My Shadow Are Running"

After returning to Guizhou, I had a little consciousness and wanted to learn how to open and operate a similar institution. At that time, my daughter was trained in the Children's Special Education Rehabilitation Training Center (hereinafter referred to as "Love Home") in Children's Children's Special Education in Nanming District, Guiyang. This institution was established in 2003. It is the first civil affairs approval of Guizhou Province. Professional institutions for special education rehabilitation training.

Zhao Xinling, the principal of the caring home, was very supportive. I gave me a lot of opportunities to go to the service centers of Hui Ling in all over the country, and even studying in Taiwan and Japan. After opening my vision, I gradually understood that the sooner the planned planning, the better, and it must be clear. For example, what she had to do at the age of 12, what to complete at the age of 16, and so on.

Under the joint intervention of me and the organization, when my daughter was 5 years old, she could call my mother and would take the initiative to ask me. Later, I sent her to two ordinary primary schools for integration education, but there, other children would discriminate against her, and the school was afraid of being responsible and dismissed us. In the end, I took her to a special school. She was more collective and confident here. At the same time, she continued to intervene in the love home.

"Xihe" stills

two

In 2013, my daughter was 8 years old, and I started thinking and wanted to do older autism. Because I know that after the child's intervention from an age institution, there are some improvements in the ability; when some capabilities have not achieved, she cannot enter the general school like ordinary children of the same age. I visited a child before, and went home after graduating from the small age of the love home. I didn't sleep at night. I kept throwing Dongxi, hitting the wall, yelling, and my mother was accompanied by full -time at home, and her spirit collapsed. In fact, this can also be understood that an ordinary person will not go out for three months, and emotional control and social ability will retreat.

I have experienced such a collapse. Once my daughter couldn't go out, she didn't sleep at home, crying for three days and three nights. I am accompanied by myself. Those who have not experienced that kind of mood cannot understand. But such a child, you really want to take her out, and it is difficult for someone to complete it, because when you don't pay attention, she breaks away and you can't keep up at all. Parents are afraid that others are ridiculed and they are afraid of their children. They can only be painted at home.

Stills of "I and Thomas"

If you do older agencies, I can refer to Hui Ling, be a community family, and rent a house in ordinary houses as a family. It is equipped with corresponding family counselors and assistants. There are no more than 6 students in the family. Care can be given to companionship, training and exercise, so that they can take care of themselves. At that time, I calculated that if each child's monthly service fee was 3,500 yuan per month, at least I had to be 3 community families, a family 6 children, that is, a total of 18 children joined to maintain normal operation.

My family's economic conditions are not good. In this way, I am more worried that I did not do it. By 2014, Zhao Xinling, the principal of Love Home, asked me to talk to me, saying that someone must do this. Since I have learned so much, would you like to come up with this head? I talked about my calculations and difficulties. Zhao Xinling and some parents told me that everyone had just needed, and told me that as long as you come forward, you can find a way together. This sentence gave me reluctant pills, and I started to do it.

On September 1, 2015, we started the trial business. At that time, we wanted to register with Huiling, Guizhou, but submitted the application information to the Guizhou Provincial Department of Civil Affairs for 10 months, so at the beginning, we operated in the name of the older part of the love home. Later, we found the Guiyang Civil Affairs Bureau, and finally successfully registered Guiyang Huiling in November 2016, becoming the first institution for Guiyang to serve the 16-59 -year -old people.

Picture source: official website of Huiling Social Work Service Center

At the beginning of the operation, only one child signed up and only one staff member. In the second month, another child signed up, so another male parent also joined. In the fourth month, there were three children, and we recruited a high school cultural level family counselor from the community. We were sent to Huiling headquarters to study, and then began to intervene.

When the institution was successfully registered, there were already 10 children, 3 families supported, and a day -to -day care centers. The day -to -day care is to come in the morning and afternoon, pay a few hundred yuan a month. In 2017, because of the successful registration of the organization, we applied for a government financial subsidy of 100,000 yuan, and five children signed up for day care, and we began to recruit office staff and briefly achieved support for support.

But in 2018, without government subsidies, we cannot be flat. Our community family care must be charged. After all, children are here all year round and need costs, but there are few families who can afford money. In the center of the day, there are two disabled people in some families. Do you say you can collect their money? Some are single -parent families and difficult households. Do you say you can collect their money?

Stills of "My Shadow Are Running"

In the early stage, the staff was also unstable. At the beginning, I always wanted to recruit college students from social workers, and felt that it would be more helpful to children. I kept going to school, continuously cultivated, and kept walking away. I will not be overwhelmed by difficulties, so I will continue to work hard and recruit again. Repeatedly, it failed hundreds of times. Later, I finally discovered that the teacher who took care of the day was ordinary people with rich social experience, such as housewives, which was more suitable. Therefore, we now have both professional social workers, special education teachers, and ordinary staff with rich social experience.

By 2020, our team and system finally stabilized. Mainly a more important thing is that Guiyang City has carried out people's livelihood projects. To solve the top ten people's livelihood incidents. One of them was to establish a daily care center for the disabled. Guiyang Huiling became a demonstration site. From May 1, 2020 to July 9, 2021, more than 30 children chose to us. The family does not need to pay the money. The government's subsidy service fee is 1,100 yuan per person, and the government is directly given to the institution. In addition, the government has a one -time subsidy of 150,000 as an institutional construction cost.

three

It's not only the management of the organization, but also the children's various issues. Our goal is that we have good ability to achieve asylum employment or support employment, and weak capabilities can live a dignified life.

When each student comes in, we will do an adaptive assessment first, and then make a service assessment in half a year. Only one year later will start to provide support services to the children in accordance with the evaluation plan. From 2015 to 2017, we only have comprehensive courses, mainly to deal with children's emotions and self-care ability. For example, there is a child who comes in at the age of 18 and is now 24. In recent years, our biggest training results for him are that when we go to the bathroom, we can stop messing up. When he first arrived, we counted it, and he had to wipe him clean. He had to use 85 pieces of paper toilet paper. There is also a female classmate, 18 years old, following the single -parent dad, he will not take a bath or handle menstruation. I went to visit home at that time, and my father said that he had no money to come to class. I said, I also have a daughter. I have to teach it if you have no money. Otherwise, what should she do? This girl, we tracked for 6 months and found that she was still capable of digging, but her expression was not understood. We slowly taught her to take a bath. Starting from knowing the faucet, it was subdivided to 50 steps, taking pictures or videos, continuous training, accompanied by bathing, usually there are supporting processes such as washing clothes and drying clothes.

Beginning in 2018, we started to divide different theme groups according to the situation of the children. For example, the cooking group, from the zebra crossing, take the transportation, how to find items, how to pay for the supermarket, how to pay it back, how to clean it, how to cut, how to fry, and teach a little bit. In this way, even if their parents are gone in the future, they can at least take care of themselves. The theme of cooking may be as long as 3 years. There are also interesting courses, such as electro -sound drums, gourds, vocal music, drama, tea recitation, and folk traditional culture. From beginning to end, spend a lot of manpower, financial resources and energy.

"Golden Flower" stills

In March of this year, we also officially launched the employment workshop and cooperated with a small jewelry merchant in Yiwu, Zhejiang. They have agency processing plants in Guiyang, making hand ropes, hair clips and clothes accessories. If you do n’t wait, our children do it to them. Now 10 children have joined the workshop, ranging from 18 to 40 years old. Basically, those who can enter the workshop are basically in Guiyang Huiling for more than three years. You can enter the employment workshop by taking the transportation, cooking, understanding the rules, and etiquette. There are 5 of them. The concept of money is already very strong. I have to go home to work overtime after get off work because I want to make money to buy a mobile phone. They can earn two or three hundred a month. My goal is to establish a production workshop for them, and they can earn 800 to 1,200 yuan a month.

However, not all children can reach this level. When parents come, I first tell them that we are not professional rehabilitation trainers. Rehabilitation training can only go to small ages. We mainly do older service support. Children of this age need to change a little bit, which requires a lot of time, not to say that you invest 50,000 or 100,000 a year, and you can see the effect immediately. Some parents did give up after listening.

We now have 56 students who take care of them, and some students have never accepted professional intervention. There is a 38 -year -old student. He has a lot of bad habits. When he sees the things on the ground, he stuffs into his mouth. We used it for 5 years to change his habit. But he still likes to take things at other people's house. This behavior is not ideal.

"Ocean Paradise" stills

But our family counselor knew that the child actually changed, but this change was small to others. Therefore, many people are unwilling to invest in autistic children. It also makes sense. The same is 100,000 yuan, and it will be invested in a left -behind child. He may become college students in the future, but it may not even have no basic changes.

But even so, I still hope to promote lonely people into society. Now the children of our community families have dinner every day, and the family counselor will take them to the community to bend, fitness, and ask other residents. So they are well integrated in the community. In the Dragon Boat Festival, neighbors will send us dumplings; after changing the season, fresh fruits will be given. In this state, the mental appearance is different, and it looks very sunny and happy.

Some people now have misunderstandings about autism, thinking that they are all high -function and genius. Although some autistic children are high -function and can go to college, there are very few people who can really go to work independently. As a parent, as long as he is calm, gentle, has less behavioral problems, and weaker ability does not matter. I don't want him to have high functions. For example, he will recognize a lot of words, play piano, and sing, but there are many violence and many self -harm behaviors.

Stills of "Autism"

Four

But even if there are government projects, we are still at a loss. From July 2020 to July 2021, although there are government subsidies, we have more people, more employees, and houses. There were only two houses before, and there were 7 sets of people. After all, they were older students. Some people even had a height of 1.8 meters and a weight of 200 pounds. Some of these children can bring 5 teachers, but some students' behavior and emotional problems are more serious, and they need 1: 1 or even 2: 1 to bring.

I will give you a account. We now have a family counselor and family assistant. There are 20 employees, 56 students, including 2 community families, 5 people in each family. From government projects, 34 people are independent registration. Among the people who register independently, 15 people pay 500 yuan per person per month, and 5 people do not pay. My family counselor's salary is 3200 yuan per person, insurance is 1,500 yuan, family assistant 3,500 yuan January, each house is 2,500 yuan per month. After packing, the monthly income of more than 40,000 yuan, but the expenditure is close to 70,000 yuan. There are many people entering this industry now. I also hope that the institutions that enter are really considered for autism groups. Don't think about making money in this industry. It is unfortunate that we have such a child like this. People say that small ages can make money. But I have been in Hui Ling for 6 years and lost 600,000. Some people say that you don't make money, you don't manage well. I don't think so, but my investment cost is too high.

My employees came over to cultivate for 3 years, and entered the group in the first year to establish a relationship with students; the second year to study at Huiling Headquarters or elsewhere, and really reached the child in the third year. Why do you cultivate for so long? Because the problem of lonely people is constantly emerging, teachers are like firefighters, and they are firefighters for a lifetime. They need to deal with various problems of their children.

Some institutions now take a month of 1,000 or 200 yuan. Have you considered an ordinary family like us? If I can intervene well, I am willing for 50,000 months, but you know that most of them cannot achieve that effect. In the past two years, many difficult families in Guizhou called me. I said that I couldn't accept it. I received more losses and closed the door faster. I can only suggest that you really have difficulties. We teach you not to pay a penny. You are a teacher to train him.

We are rarely donated here here. Because we live in that kind of resettlement room, from the 3rd floor to the 7th floor, others come in and take a look. You seem to be unconventional. Like every family, you don't pay much attention. Instead, some caring people donated 50,000 yuan for the venue to decorate. This year's largest donation comes from 100,000 yuan from One Fund .lpl.cares, ready to be a cooking skills training base for Guizhou's mental disabilities. One fund knows us through Guiyang's love home.

The government and the Disabled Persons want us to make blood independently, and I am also very entangled. Is it compatible with autonomy and serving the society? I don't know, maybe I am too ideal. But Hui Ling is also my daughter's future, and I can't give up.

My daughter has been intervene in the institution since she was a child, and now she has also received services in Huiyang, Guiyang. In addition to lack of emotional ability and social ability, now she likes singing, having gourds, and she will cook, take a bath, wash clothes, and take transportation. Even Sunday, she will ask me, what do you want to eat for my mother, I will cook breakfast for you. So many parents envy me.

"There is a horse on the mountain" stills

Some time ago, I had a primary school classmate who hadn't contacted for a long time. I didn't know where to get my phone call, invited me to participate in his son's wedding banquet, and asked my daughter where to study, what university, did you work? After listening to this, I actually felt very embarrassing, but my heart did not fluctuate, because it had been accepted. However, when I was in a bad mood or quarreling with my husband, my daughter seemed to have no feelings on the side. It was time to sing and sing, and the gourd silk was blowing the gourd. At that time, the fluctuation would be relatively large.

My husband and I often joked and raised a white -eyed wolf. We have also joked, and feel that the two of us are not together, is it better, but later we feel that do n’t face this kind of joke, or face it honestly.

Many autism families have collapsed because of their children's troubles. Fortunately, our family is very united. After the daughter is diagnosed, everyone is actively facing. Regardless of the husband and wife, or other loved ones, there is a simple love, and there is difficulties, so you can help. My child and my dad never considered the second child. I have thought about whether the daughter can be taken care of by the cousin and sisters in the future. If you don't think so now, they all have their own lives, and they can only follow the road of the institution.

Some parents suggested me to give my children a family, because there are people who are older around them. But I still want to follow my daughter's opinions. If at a certain age, she really has the idea and needs of falling in love. I will support her, but if not, I will not be promoted by adults. I will still respect her.

"Mary and Marx" stills

I am almost 50 years old this year. I only got the down payment of the house with the help of my family the year before. I bought the Hangda house. Just after the down payment was paid, Evergrande had mines. My children and my dad are both the bottom of society. We work so hard. For us, we are not only our guarantee, but also my child's future guarantee.

I dare not say when the media interviews me when I interview me. After all, I am now the secretary -general of the mental disabilities and relatives and friends associations in Guizhou Province, and the head of Guiyang Huiling. I want to bring others hope. Essence Sometimes I think that in the institutional students, there are 12 people who have followed up for more than 4 years. They follow me, which is my responsibility, and I cannot give up.

- END -