Soon it's the annual April 2nd, and as usual, I still have to write something.
Let's talk about the situation of his own baby first: Xuanyuan is 11 and a half years old, 1 meter 55 tall, close to 100 pounds of weight, standing next to me, can really feel that it is a big guy.
In terms of ability, let's talk about it from several angles:
Language: Can express their basic needs, but there will be a lot of misuse of vocabulary, such as saying: "Today's weather is very relaxed", "Brother is Dadu", etc., some can understand, some can not understand, because they often listen to stories, so they will speak some written language, such as: "You want to say this is very wrong" "Mom, Dad said funny things, so we laughed out loud..." This kind of at first glance is no problem, but it will be a little strange to listen to in life.
Social: have their own good friends, but also like to make friends, the epidemic home will occasionally tell me that I miss a classmate, but there will be some problems in communication, such as only gushing that you are interested, completely regardless of what the other party is saying, if the dialogue, the answer to the question is also more, others ask you what you want to do when you grow up? He said he went hiking with his dad on vacation.
Intelligence: Comprehension ability is still relatively weak, especially in the study of the performance is very obvious, the problem slightly twisted a little bit can not understand, dyslexia is very serious, often read a sentence completely do not know what it means, every night a fixed loud reading punch card for ten minutes, if you do not read the book alone to listen to them to read, completely do not understand, lose word typos and drop words in too many places.
Progress is still there, at least in life to take care of themselves is no problem, wash their own fruit, cook their own noodles, brush dishes and wash clothes (with a dishwasher and washing machine) are all OK. And a big improvement this year is to learn to play games, every day muttering is MC, (I think it's very weird, that game I will not play, but they poke Gollum to learn, will not fight mode, every day when Lego builds their own city), the second participated in a programming robot competition, but also took a second prize back, the progress in painting is also relatively large, strange is that in school on the drawing is very good, go home will only draw a variety of buildings, sports last year learned to jump rope, the boss learned to play baseball, Although the coordination is still not very good, at least it looks a bit like...
My mentality also gradually learned all kinds of anxieties from the previous attention, and began to slowly withdraw from it, accept the reality, and get the aspect of life first, and then think about other things.
This year I want to talk about some of the dilemmas of the elderly star baby, although the voice is very small, but also want to be heard:
For the larger autistic population, the first problem is the fault line of social support:
Rehabilitation subsidies for children with autism: Looking at the policies of various places, the basic coverage is 0-15 years old, and there is no relevant support for older children.
School education: compulsory education stage schools can not refuse, but after compulsory education, that is, after the child is about 15-16 years old, most of these children are not admitted to high school, go to secondary school or vocational school generally have performance requirements, and is for ordinary people's curriculum, special groups may not be able to understand and learn.
In terms of vocational training: there are very, very few schools for vocational training for special groups, and because autism is a broad spectrum disorder, the difference in ability between light, medium and severe is very large, and it is difficult to tailor different levels of vocational training to their situation.
Employment: Some autistic people have basic employment needs and abilities, at least in the group I have come into contact with, mild to moderate children (the number of such children is much greater than the number of severe people) have a certain learning ability, through effective vocational training can learn some basic skills, but can accept very few enterprises.
Therefore, the older the child, the more panicked he will be, and he does not know where he can go after the compulsory education stage?
There is no school to go to school, and can not stay at home, employment has not yet reached the age, parents have not yet retired can not accompany the baby all day, there is not enough financial resources to hire children to accompany, for this age of children to provide services for the institution is too few, it seems that everyone has no direction, no social support, can only rely on parents to help themselves, but the family's economic and ability needs are very high, most families simply can not find the direction.
For the elderly autistic group, welfare faults, service faults are urgent problems to be solved, first solve the basic services, and then consider the next step:
Is the coverage of the service sufficient? At the very least, whether the first- and second-tier cities can be fully covered, so that children should at least not be too far away from home, parents have the ability to have the energy to visit regularly, and children can occasionally go home.
Whether the price of the service is affordable, I have seen a related vocational training before, which translates to about 20,000-30,000 a month, and I believe that this price will discourage most families.
Can the service meet the individual needs, the severe children need basic life care and further rehabilitation, and the moderate and mild children need to add some vocational skills or specialty training on the basis of further rehabilitation, can the institution meet the needs?
Then there is the standardization of institutions, which is not only in the environment and staffing, the strength of teachers, but also in the humanities, whether they really understand this group, respect this group, give them caring and dignified treatment, so that children can accept and adapt to this environment.
Finally, the degree of social acceptance, if some children really have employability and demand, then can more companies be willing to accept such a group of people, have corresponding suitable positions, and give reasonable employee treatment?
Considering a little further, at present, autistic families are mainly parents taking care of their children, and when their parents die one day, where should these children go? In "Ocean Paradise", the father played by Jet Li wants to take his child to the sea because he knows that he has cancer, showing the deepest fear and despair of an autistic parent, if he takes a step ahead of the child, what will he do?
Which institution can receive care? orphanage? Welfare? rest home? psychiatric hospital? None of them are a safe place for children, and I have seen a statistic before that in a care institution, the survival time of this group of people is on average one and a half years... This is a figure that makes people look chilling, everyone must remember a few years ago there was a related news, a chubby big boy, went to the care institution less than half a year died, parents to see the body, the child is thin they can not recognize ...
The lack of regulatory mechanisms makes parents completely uneasy that these so-called institutions can treat the children who stay behind.
Some parents are also exploring the trust mechanism, the premise of course is to have money, enough money to protect the lives of their children after death, but this mechanism is also just formed, to perfect the belief that there is still a long time to go, and, just the guarantee of material life is enough? How to deal with the mental and psychological needs of children?
Every time I say this topic is very heavy, in fact, The Three Treasures Mother is already a relatively lucky one, the child's problem is not serious enough to take care of themselves, and even they can learn a lot of things after hard work, but I think that after graduating from junior high school, I am also at a loss, where to learn? Where to get employed? Ask around and ask around, but there is still no answer.
Every time I think of a headache, my husband will advise me, it doesn't matter, let's work hard, buy them a small store, open a kebab shop, and collect money on WeChat. And there is also the third, we are not afraid that they are not accompanied, there is always someone who can help come up with an idea, what are you worried about?
But what about families of children with severe autism? What will they do in the future?
The number of autistic patients, the official current number is 1:68, behind this ratio, is more than ten million living people, counting the relevant families, is also a very large group, but the number of people and institutions that can provide services for these groups is really too small and too few, the relevant policies are mentioned every year, but as far as the eye can see, the degree of environmental improvement is still very limited.
I hope that our government and related agencies will not remember on April 2 of each year that there are so many helpless children, looking forward to giving them a future.