April 2 this year is the 15th
"World Autism Awareness Day"
Children diagnosed with autism
We call it "Kids from the Stars"
Because of autistic children
It's like the stars in the sky
Distant and lonely
Twinkle alone in your own world
Unfortunately, autism to this day
There are no very effective treatment options
This makes people with autism and families feel helpless
Most people's daily routines
But it is the dream of autistic people
Recently, the reporter visited several families of autistic patients in our city to understand their efforts in suffering and the struggle in the predicament. I hope that we can all take action to gather the spark of stars with a little love, illuminate the way forward for children, let their planet no longer be cold, and let the families of autistic people see new hope.
patient
Every bit of progress is incredibly tough
Xingzai (not his real name) is 20 years old and has been working in a hardware factory near his home for a year. Although it was a simple hardware scissors assembly work, it took Xingzai a while to adapt. However, now Xingzai can commute to work by himself and work in an orderly manner.
At the age of three or four, his parents found that Xingzai did not like to look at people, did not like to talk, and reacted slowly to do anything. I thought it was mental retardation, but when I took it to Guangzhou Hospital at the age of 7, I learned that this is a kind of autism. Doctors say the best time for treatment intervention has been missed. Back in Yangjiang, his parents continued to encourage him at home, and sent Xingzai to the rehabilitation center of the Disabled Persons' Federation to study. Under the love and companionship of everyone, the ability of Xingzai has improved little by little.
Seeing the progress of Xingzai, my mother was particularly pleased. She said that after Xingzai entered the hardware factory, she still did not take the initiative to communicate with people, but the boss and co-workers in the factory were very good to him and did not look at him with strange eyes, and she felt that Xingzai was becoming happier and happier now. He was particularly pleased and felt that all the people here were tolerant and would not point fingers at himself. Most of the time, he does his work on the assembly line and does not have a lot of social pressure. ”
For these "children from the stars", every bit of progress is extremely difficult. Autistic people like Xingzai who can achieve some degree of employment are only a minority. According to survey statistics, 99% of adult autistic patients still have to be cared for by adults, unable to take care of themselves, and unable to embark on the road to employment.
Rare success stories are comfort and encouragement for parents struggling in a state of despair, but sometimes they have high expectations - hoping that their children will have the same life as normal people.
"Accepting autism from the bottom of your heart will stay with your child for the rest of your life is a difficult step that parents must take. Applying the standards of ordinary people will disappoint parents and make children miserable. "In the view of Huang Yedao, director of the Autism Rehabilitation Department of the Municipal Disabled Persons' Federation, for autistic patients, giving a job opportunity is an important way to help them realize their self-worth, establish social relationships and achieve independent life." Most parents hope that their sons will become dragons and their daughters will become phoenixes. But parents of children with autism just want their children to be exposed to society, find jobs and make a living from it, which is their greatest satisfaction. ”
Family
A "marathon" without knowing the end point
For many parents of autistic patients, caring for patients is a "marathon", always running, but where the end point is, do not know.
Xiao An's (pseudonym) mother originally had a stable job, but two years after giving birth to her second child, she found that the child was not quite right, did not talk or communicate with people, and had a big temper. Take it to the hospital to see a doctor, who says the child is likely to have autism. Xiao An's mother collapsed and was sad, and went online to frantically collect autism treatment plans and related articles around the world. However, the answer that was most retrieved was that "there is no very effective treatment for autism for the time being".
Xiao An's mother quit her job and began to take Xiao An to a rehabilitation institution for early intervention treatment of autism. "The family is the child's father alone to earn money and feed our mother and son. I was afraid of getting sick because once I was sick, I had to spend money on the treatment and I couldn't take care of the children. Today, my greatest wish is to pray for the safety and health of my whole family. In the low voice of Xiao An's mother, there is the tiredness and pressure of the parents of many children with autism.
Little Ann Mama also has a rare happy time. After three years of study, Xiao An can now slowly speak some simple language, and Xiao An's mother is very touched to hear him shouting at his mother. She said that she put down her work, gave up her personal future, and accompanied her child to recover, hoping that her child would be able to return to mainstream society in the future, not expecting to reach the level of a normal child, at least having the ability to take care of herself. "As for what kind of work children can do when they grow up, or how good a future they have, I really can't think about it for the time being." Speaking of this, Xiao An Ma couldn't help but moisten her eyes again.
Municipal Rehabilitation Center for the Disabled
Six-year-old Meimei (pseudonym) is currently studying at a rehabilitation center for the disabled, and seeing that she is about to reach the age of elementary school, Meimei's mother begins to worry about where her children go to primary school. "I have inquired that the vast majority of autistic children in Yangjiang have reached the primary school age, most of them have entered special schools, and very few can enter primary schools. Yangjiang Special School is very good, but it only enrolls dozens of children every year, and the degree is so small, I don't know if we can be so lucky to draw a quota. ”
Compared with Xiao An Ma, for the future, Mei Mei Ma is a little more optimistic. She said that she is a baker, and if Meimei can't continue to go to school and work alone in the future, she wants to open a caring bakery and make bread and biscuits with Meimei to earn money to support herself.
"I look forward to a place where I can accept more children like Meimei, and when they grow up, they will always have a home-like place to go." Meimei Mom said that nowadays, all sectors of society give a lot of care and support to children with autism, but they can't sit back and wait, they have to do something themselves, and they don't want to burden the society.
society
Eliminate discrimination to provide care and inclusion
In an ordinary commercial house in the city, 50-year-old Fang Jie is accompanying her 19-year-old son to dinner. Akon (pseudonym) has been diagnosed with autism since childhood, and it usually takes an hour to eat dinner, sometimes a few bites from his family, and a meal to eat. "It usually takes an hour for my son to get up, an hour to go to the toilet, an hour to eat, and an hour to take a bath. There doesn't seem to be enough time each day. You can't urge him yet, you have to go with his rhythm, because the most feared thing for autistic people is that their emotions are out of control. Over the years, Fang Jie and her family were physically and mentally exhausted, and what made her more anxious was that Ah Kang was about to graduate from a special school, but his condition was special and he had not yet been able to integrate into society.
Facing the future, the family is very confused. "Children grow up one year, and parents get older every year. Their lives are long, and it is impossible for parents to take care of them for a lifetime. I hope that he will have a job as soon as possible, and for the children, he will be able to take care of himself; for society, it will not be a burden. ”
Now, At home, Fang Jie consciously trains Ah Kang to tidy up the room and participate in housework, such as teaching him to fold towels, wipe glass, and mop the floor. Fang Jie also mentioned that if Ah Kang still can't integrate into society after hard work, he hopes that the relevant social trusteeship institutions will take them in, "Until the day when we can't take care of him when we are old, even if we spend some money, I hope that he can be taken care of in the second half of his life." ”
At present, the Municipal Labor and Employment Service Center for the Disabled provides public welfare services, which can provide pre-job training and self-care ability training for autistic youth, and can also provide autistic patients with the opportunity to intern in the community and cooperative businesses. But these are not enough. Huang Bolian, deputy director of the Municipal Rehabilitation Center for the Disabled, said that their lives are long, and it is impossible for parents to take care of and accompany them for a lifetime.
Huang Bolian said that the care and assistance of autistic patients is lifelong, from life and study, vocational training, work and employment, to the elderly, is a complete chain of rehabilitation, education, care and other links. Improving their living conditions requires more love and tolerance from all walks of life. "I hope that more enterprises and businesses will accept autistic people, provide them with employment opportunities, and let them use their labor to gain dignity and value." It is also hoped that the state will increase publicity to eliminate discrimination against autistic patients and create a good social atmosphere of respect, acceptance, concern and care for the disabled in the whole society. ”
Attention is also a kind of love
Knowing is what helps
Together we guard the children of the stars