This year's World Autism Awareness Day
What is the theme slogan
Do you know?
Spotlight on Autism (Autism) Services:
Establish a social security mechanism
Promote the high-quality development of service institutions
On the official website of the China Association for The Mentally Disabled and Relatives and Friends, the slogan was interpreted, which mentioned:
"At present, there are many problems in the field of autism (autism) services, first of all, the layout of service institutions is unreasonable, most of the service institutions are concentrated in large and medium-sized cities, and the number of service institutions in remote, rural and western regions is small, and the service supply is insufficient."
Today, the story of Koike Mama is just a fragment of countless parents with their children to intervene in different places, we show these not simple days and nights, hoping that the whole society will pay attention to and improve the situation of these families.
Xiao chi and mom's home, 1000 km from Shenzhen.
At the age of three, Koike was diagnosed by doctors with typical autism.
Koike's parents went through all the mental processes: collapse, unacceptable — despair, anxiety, struggle — gathering information, encouraging each other — and making up their minds to intervene.
In the end, they chose to let their mother and grandmother leave the third-line hometown with Xiaochi and go to Shenzhen to find institutional intervention, and their father stayed at home to work and earn money.
01
Originally, I only wanted to stay for half a year
As a result, 4 years passed in the blink of an eye
After paying tuition, renting a house, and after all the dust settled, Xiaochi's mother and father calculated the cost remotely, and decided to take half a year as the deadline, and when the child made progress, the family also knew how to intervene and then went back.
"Shenzhen is really too expensive, such a house in our hometown only a few hundred yuan a month, Shenzhen to triple the price."
Koike's mother found a two-bedroom and a living room in the urban village near the institution, and the kitchen window was pushed open, and the oil smoke from the neighbor's cooking would clearly float over.
There are many such urban villages in Shenzhen image source/network
Living with her in the urban village, there are other parents who are "connected to the same fate" as her.
Ningxia, Qinghai, Northwest, Jiangxi, Hubei, Hunan... The farthest is from Inner Mongolia, accounting for nearly half of the number of people in the institution, and most of them are Xiaochi's mother, a combination of mothers plus grandmothers or grandmothers with children, and fathers who earn money outside to ensure their lives.
In the first month, everything can only be described as chicken flying dog jumping, Xiaochi's mother called Xiaochi's father every night to cry, sometimes simply crying with the child.
She felt particularly aggrieved, from small to large food and clothing worry-free, but also successfully completed the school, find a job, find a husband, buy a house, buy a car planning, the old home of a hundred and thirty flat, open the window is a dense tree, after the weekend to do health, the sun sprinkled into the living room, she saw the day is slowly unfolding in the light and shadow, but all this is all abruptly stopped after the child was diagnosed, the reality pulled her back to the narrow and cramped Shenzhen urban village.
Some parents have been here for 3 or even 5 years, whenever Xiaochi's mother can't stick to it, they will always comfort her with the tone of the person who came over, the child's intervention time is just a few years, stay up, as long as there is progress, everything is worth it.
It's just that Xiao chi's mother never thought that her own staying up was 4 years.
02
Changed places
Changed a circle
Live with another group of people
When the half-year contract expired, it was when Xiaochi's state was getting better and better, she decided to take advantage of the victory to pursue, and continued for half a year, so half a year and half a year, Xiaochi's mother mixed from a new parent to an "old fritter".
During the period, with the relocation of the institution, she also moved with other parents, and the mothers all have a common tacit understanding - furniture can not be bought without buying, decoration can not be done, not only save money, when leaving in the future, you can pack and leave at any time.
Another tacit understanding is that they have not mentioned the specific reasons for leaving with their children with their relatives, friends and neighbors in their hometowns, and they have mixed up with some vague statements, and their past dating circles have gradually stopped contacting.
"I don't want to talk to them about children, they will never understand how I feel, why bother?"
Koike's mother said that her current interpersonal relationships are all teachers and parents in the autistic circle.
"In fact, the earth is moving, the days are always going to pass, we just changed a place, changed a circle, and lived with another group of people." 」
Image source/network
When children intervene in the institution, they chat from the sidelines, share Taobao shopping carts, and complain about family trivia. On weekends, I will occasionally take my children to Happy Valley, OCT, Dameisha, ride bicycles to Yangmeikeng, and watch each other's children.
Quan Mom is from Dongguan and lives next door to Xiao chi Ma.
In the eyes of the whole mother, their parents have not worked for a long time, do not go out to socialize, do not care about other matters except intervention, and have become out of touch with ordinary society.
03
Offsite intervention
Is this the right choice?
Every holiday, the whole mother will take the child home immediately. She said that because he could not accompany his children, the whole father did not know how to get along with his son more and more.
And Gray Mama's father, who failed to see his grandson, passed away...
These vivid cases of the people around them are more and more shaken by Xiaochi's mother - originally for the sake of the child, but in the end the family is separated, is it really good for the child?
Koike is 7 years old and has improved a lot from four years ago. A few days ago, the agency left koike with homework to record the happiest things during the holidays.
He wrote: During the holidays, my father came to see me and brought me a lot of delicious things to eat, I was very happy, very happy, before my father came, I was looking forward to it, I couldn't sleep...
Koike's mother photographed the composition and sent it to Koike's father. They both felt that the days of such separation should be over.
The leaves were yellow and green, and groups of parents from other places came and went, and the time did not wait. Children's progress is fast and slow, and some parents feel that their children have made little progress at all, and they are also mixed with institutions. But not many people say regret this rush.
Koike's mother said that when time goes back, she will still take Koike on the road of off-site intervention.
"Because of life, it didn't give me a better choice."
Is such a model desirable for interventions with children uprooted from home?
Tian Huiping, founder of Xingxingyu, the first autism service agency in China, and Zou Xiaobing, director of the Child Development and Behavior Center of Zhongshan Third Hospital, all put forward their views, go to Ertiao to see what they say, and vote to leave your point of view.
Author| Daba Editor-in-chief| Qin Yu