After 90, Li Xiaojiao ran the school for 13 years to explore and serve autistic people throughout their lives

What to do when the "children of the stars" grow up

After the 90s, Li Xiaojiao ran the school for 13 years, exploring and serving autistic patients throughout their lives

On March 3, the eve of the 31th World Autism Day, Li Xiaojiao ushered in her "most exciting" moment in 16 years - the unveiling of the Yangqu County Rehabilitation Center for the Disabled in Taiyuan City. According to the plan, this public and private center will provide life care, skill training and other care services for older autistic patients, and provide the possibility to solve problems such as the care and growth of older autistic patients.

"I've invested 13 years of youth, why don't I keep going?" As a third-party operator who won the bid with professional advantages, Li Xiaojiao is looking forward to this, "You don't know how important this is to us, it can be said to be a beacon, and many autistic 'big children' have hope." ”

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In 13 years, from 4 teachers and 3 children, it has grown to 53 teachers and 135 children, and more and more people come to the door for help. Li Xiaojiao, a post-90s young woman who founded the autism rehabilitation institution, said: "This is a road where confusion and hope coexist, but we have been moving forward. ”

Li Xiaojiao's organization called "Taiyuan Lingxing Community Service Center" (hereinafter referred to as "Lingxing") is dedicated to autism professional assessment, rehabilitation training, social integration and care services, and currently has a total of 135 autistic patients, including more than 12 "older children" aged 35 to 25.

"This is actually 13 years of living beyond your means, and it would be good to be able to operate normally." Even so, in Li Xiaojiao's view, economic problems are not the main thing, "the biggest pressure is that our autistic children are growing up."

Li Xiaojiao said that people pay more attention to early intervention for children with autism, but its core barriers may last for life, and the vast majority of older autistic patients in "Lingxing" are difficult to achieve independent living.

It is understood that among the more than 10 million autistic patients in China, the number of patients facing adult difficulties is huge, and the care and care of adult autistic patients is becoming a serious problem that families and society cannot avoid.

A teaching assistant planted the seeds of the "stars"

On Friday, April 4, 21-year-old Feng Kai (pseudonym) wandered in the corridor of "Lingxing", watching people come and go. Every Friday at 11 p.m., his mother would pick him up and take him home on time. Since the morning, Feng Kai has kept repeating a sentence: "Mom can't pick up at 5 o'clock?" "Mom can't pick up at 5 o'clock?" ......

Wang Zheng (pseudonym), who is 3 years older than Feng Kai, has been in school for many years and is very close to the teachers, but he can't tell the difference between "me" and "you" when he speaks.

Li Xiaojiao said that Feng Kai and Wang Zheng's behavior is a typical symptom of autism. Autism, also known as autism, is a lifelong disorder of congenital brain development. The epidemiological survey on the prevalence of autism and its comorbidities in children aged 6-12 years in China organized by the Children's Hospital of Fudan University concluded that it was 0.7%.

"Some children only talk about their own things, and they only say one word all day; Some have clear eyes, but they are unwilling to look at people; Some have normal language development, but hardly speak to people. Li Xiaojiao said that autistic children are trapped in their own minds, and some people call them "star children", but in any case, they live in reality after all.

Thirteen years ago, Li Xiaojiao, who had just graduated from university, used 13,10 yuan borrowed from her family to rent a private house in the old town of Taiyuan, hired four full-time special education teachers and one part-time aunt, and embarked on the road of accompanying autistic children.

The reason is that she worked as a service assistant for autistic children with teachers during college, and her patient, loving words and deeds impressed parents deeply. After that, the parents of several children came to her home several times to ask for help, hoping that she could set up a "school" for autistic children to educate and care for these children.

"I didn't say no because I thought the kids needed help." Li Xiaojiao named this "institution" "Lingxing", "with the intention of caring for the 'children of the stars'" with their hearts."

The children, accompanied by Li Xiaojiao, bounced around the house. When outdoors, there are children who are interested in cars, regardless of whether the car is driving or not, they will rush up and pull; Some children like the numeric keypad for access control, so they press from the 1st floor to the 6th floor; Others took a look at the couplet on the neighbor's door and tore it off when passing by... When a neighbor came to the door, she had to apologize with a smile.

Because of the lack of professional experience, Li Xiaojiao and her "institution" have moved 6 times, and "Lingxing" is also relying on the support of all walks of life in frustration and accumulation, and gradually "grows up".

One more child is more stressful

In 2014, Li Xiaojiao ushered in a turning point and officially registered and established the "Taiyuan Lingxing Community Service Center", and the number of children increased from a few to dozens at the beginning.

From volunteering to help autistic children to insisting on running a non-profit school for 13 years, Li Xiaojiao has experienced a difficult transformation. She summed up her journey in one word: tired.

Li Xiaojiao said that there is a gap in the funding of running the school every year, including the childcare fee, "we can't charge according to the cost, in other words, one more child, more pressure."

"I've been studying desperately." Li Xiaojiao said that many autism schools focus on feelings, but the plan is insufficient and it is often difficult to sustain. Some well-run institutions often have sufficient investment in the early stage, and the evaluation system, teaching, and talent training are more mature.

Recalling the difficult times, Li Xiaojiao said that it was the teacher of "Lingxing" who gave her the greatest courage.

As the only male teacher of "Lingxing", Li Linfeng of the 90s generation said: "This is not a place to earn money, but I like it here. ”

"Children are cute, and I think the only difference between them and ordinary children is that they need more patience and love." Li Linfeng said that the school is currently receiving support from the government, and he believes the prospects are good.

"Even a little bit of progress is a great incentive"

"Learning is very important for autistic people, how to drink from a cup, eat with a spoon, how to lift pants in the toilet, and even how to play, you need to learn." Li Xiaojiao said that the most difficult ability for autistic people to develop is communication. With parents around, there is no problem with simple communication, but when you really enter society, "a look may affect emotions."

Li Xiaojiao said that when children are found to have autism, many parents are ready to spend their lives. In the past 13 years, she has helped more than 2000,<> families, "the process has been long and difficult, but even a little progress is a great inspiration".

Zhuang Shuaishuai, who has been working in "Lingxing" for 10 years, told the reporter of China Youth Daily that in the past, when the children of "Lingxing" saw volunteers, they would cover their eyes and secretly look through the gaps between their fingers, and now some children can say "hello" in person, which is the effect of insisting on social integration exercises for children, which is a great improvement.

"We choose teachers not to ask about origin, but to look at growth." Li Xiaojiao pays more attention to the establishment of a relatively perfect and scientific talent training system, paying attention to practice, theory, and ethics, "the core is to select teachers who can really be good to children, but the cost is also high."

Li Xiaojiao said that in recent years, the teaching team has stabilized and gradually formed a corporate culture, and teachers have a sense of achievement, belonging and identity, "one is from the progress of children, and the other is from the recognition of parents."

At present, the average income of "Lingxing" employees is more than 3000,<> yuan, a teacher with three or four children, combined with the assessment of each child every week, set teaching goals, "often after a class, the teacher's throat is dry until it smokes."

Now, many children of "Lingxing" have grown into adults. The problems that parents are worried about have gradually changed from how to educate and accompany them to how to help their children find employment and go to society.

The Opinions of the State Council on Establishing a Rehabilitation Assistance System for Children with Disabilities, issued in 2018, include eligible autistic children aged 0 to 6 in the scope of rehabilitation assistance, and provide institutionalized guarantees for their enjoyment of basic rehabilitation services.

The Guidelines for the Evaluation of the Quality of Special Education Schools, released in 2022, reflect the support for special education teachers, mainly including helping teachers' professional development and improving treatment guarantees.

However, the existing policy support, subsidies, and resource allocation are not enough to cover the whole life cycle of autistic people, and the support for some special educators needs to be improved.

Explore Mission Impossible: Serving People with Autism Throughout Their Lives

Over the years, Li Xiaojiao has visited many autism schools and found that many of the principal's children are autistic children, and "they put their whole lives on their children."

Fan Shilu, who currently serves as the executive principal of "Lingxing", is one of them.

Eighteen years ago, when his son was diagnosed with autism, there was no professional rehabilitation facility in Taiyuan. To this end, Fan Shilu founded the Shanxizhou Autism Rehabilitation Institute, which was the earliest autism rehabilitation institution in Taiyuan.

"From the beginning, we positioned ourselves as a private non-enterprise unit." For the sake of his son and for more families with autistic children, Fan Shilu, who originally had a good income, quit his job and devoted himself to it.

However, due to many reasons such as debt, the "ark" eventually "ran aground". "My children are now 25 years old, and the first children in the Ark institution are also in their 20s, and there is nowhere to go. We decided to work with Xiaojiao to face the problem of older autism groups. Fan Shilu said.

"Older care for autistic people is a social problem." Fan Shilu said, "One of the most uncomfortable people is the parents. ”

In 2016, a reporter from China Youth Daily paid attention to the problem of Xiaoyu (pseudonym), an autistic child in Houma City, Shanxi Province, being excluded from primary school. Now Xiaoyu will turn 18 years old. Mother Cheng Yu (pseudonym) told reporters that Xiaoyu is currently in good condition, but in the past two years, he has successively looked for two jobs accompanied by his mother, saying that he does not want to pay and just exercise, but in the end he has not been able to stay.

Cheng Yu did not reduce his child's autism and took him out, and also took the initiative to share his experience in taking care of his son with others. But she is still worried: What will happen to her son's future?

Cheng Yu's concern is also the direction of Li Xiaojiao and Fan Shilu's efforts, hoping to achieve the ideal goal of serving autistic patients throughout their lives. In the eyes of some insiders, this is almost an "impossible task", which requires the joint support of multi-dimensional social forces such as policy, legislation, education, medical care, and media.

"Serving people with autism throughout their lives can only be described as an exploration." Li Xiaojiao said that some parents once asked her, since it is to serve the whole life of autism, can the school accept her child in his 40s? She didn't dare to agree when she thought about it, so she could only try her best to help.

Last year, a public rehabilitation center in Yangqu County was to be tendered for operation, and Li Xiaojiao signed up for the first time. What made her and the teachers excited was that the "Lingxing" team finally won the bid, "here is large, the space is sufficient, and 'Lingxing' has a new campus."

Shen Caiping, deputy county magistrate of Yangqu County, introduced that the Yangqu County Rehabilitation Center for the Disabled adopts a public construction and private operation mode and introduces high-quality rehabilitation service resources, aiming to improve rehabilitation services to a higher level in a short time.

"We plan to use Yangqu Rehabilitation Center as a care center for older autistic patients, and the ideal goal is to realize the whole life course of caring for autistic patients." Li Xiaojiao introduced that 25 autistic patients over the age of 12 have been enrolled in the center.

"My mission may be to help these children"

Colorful round diamonds, light touch at the fingertips, black night, golden stars, a colorful deer looking up at the stars under the starry sky... If you don't see it with your own eyes, it's hard to imagine a beautiful "diamond embroidery" work by the skillful hands of an autistic child.

"This little monkey painting is made by me out of plasticine, you can call me the boss lady." On April 4, at the entrance of the Yangqu County Rehabilitation Center for the Disabled in Taiyuan City, Lin Fang (pseudonym), a 2-year-old autistic patient, took the initiative to promote her handiwork.

On this day, more than a dozen autistic children, with the help of parents and teachers, put their handmade works such as diamond embroidery, paper cutting, and painting on the stalls, which was a "festival bazaar" "led by them".

"It may take a week for an ordinary person to embroider a full-embroidered 'diamond embroidery' with a pattern size of 50 centimeters, and it takes a month for Xiaofei (pseudonym) to complete." Li Linfeng introduced that Xiaofei, a 19-year-old autistic patient, usually likes to listen to words of encouragement and praise, and he is particularly focused on embroidery, which can be uninterrupted for several hours.

In the eyes of Zhuang Shuaishuai, who has been engaged in special education for 10 years, these children are not so special, "most of them are in good condition, the difficulty is how to integrate into society, like Lin Fang, there are many capable children, there are many centers."

At the bazaar, a customer held a work and praised Xiaofei, who was selling goods: "You do a really good job, like an artist." ”

This made Xiaofei happy, she raised her eyebrows and said seriously: "In the next step, I will add another 10 times, do more for you, and I will do whatever you want." ”

The theme of World Autism Day 2023 released by the China Disabled Persons' Federation is: Care for autistic children, pay attention to and support the caregivers and professional workers of autistic people. This realistic and targeted attention and appeal made Li Xiaojiao and her colleagues feel warm.

"Everything is going well, and the plight of autistic people is not unsolvable." Li Xiaojiao said that compared with the past, there have been many positive changes in the current policy and social environment, and "some uncomplicated adjustments are enough to change the lives of many children."

Li Xiaojiao has never changed her mobile phone number, answering all calls, and has answered more than 3000,<> family calls for help. "Born with a mission, my mission may be to help these children," she said. ”

Zhongqing Daily / Zhongqing Net reporter Hu Zhizhong Source: China Youth Daily