This is the 4139th real-life story we tell
I am Xiao Xie, 37 years old, from Tai'an, Shandong. I married to Jining 13 years ago.
In the second year of my marriage, my eldest daughter was born. With the joy of becoming a mother for the first time, I was ready to welcome the arrival of a new life. Who knew, what would come was huge bad news! When my daughter was 3 years old, she was diagnosed with "regressive severe autism."
From then on, my sky fell. I collapsed again and again amidst my daughter's cries and her high-pitched screams. I wanted to take her out of this world with me countless times.
It wasn’t until 6 years later, when my youngest daughter was born, that my life had a glimmer of light. Today, our family of four stays together through thick and thin, living a strong and happy life.
(We are a family of four)
My husband and I have been friends online for many years. I have forgotten how we added each other. I don’t even know that I have such a person among my friends.
Who knows that my indifference hides his years of concern. Years later, he sent me some caring text messages, and when I didn’t respond, he called me and introduced himself, and we started chatting.
Then he confessed to me, saying that he had been observing me for several years and thought I was pretty good. He was worried that if he didn't confess, he would not have a chance in the future.
I thought he was joking, so he said that I was looking for someone to get married. He said that we should get married. I thought he was quite funny, so I actually started dating online with him.
When we met later, I found him to be quite honest and very agreeable. Although my parents opposed my marriage, they respected my idea.
I had a concern at the time. My educational level was not high, and he was a college student, so I felt he was not worthy of him. He said that university is just a diploma, and what he likes is my character, outlook on life, etc.
(Eldest daughter is nine months old)
Two or three months after we established our relationship, with the blessings of family and friends, my husband and I got married in 2011. In 2012, our eldest daughter was born.
As if we have obtained the most precious treasure in the world, we hold our children in the palm of our hands and raise them according to the books.
The child has not slept well since she was a child. She has little sleeping time and is very sensitive to sounds. Any disturbance can wake her up. When she fell asleep, we all had to tiptoe and didn't dare to make any noise.
She is not like other babies. Even during the confinement period, she only has a bowel movement every few days, and the longest one is six days. But as first-time parents, we don’t understand and don’t know what this means. I am busy every day, but I am happy at the same time.
Especially the father of the child, he wished he could be with her all the time. As soon as he got off work, he would help take care of the child, bathe the child and change diapers very carefully. Except for breastfeeding, my husband does everything else at night. Although we are very tired, seeing the smile of our child makes our hearts as sweet as honey.
(Husband and eldest daughter were young)
The child is very good-looking. When a group of children are together, she is definitely eye-catching. She is always praised by others, which also satisfies our vanity as parents.
The child turns over and sits, walks straight away if he can't crawl, and can call mom and dad when he is about one year old, which has become our pride.
However, she has multiple food intolerances and is lively and hyperactive. Ever since she was a child, she has been asked to take pictures, but she has never cooperated and stood there honestly. She has to be held down to barely take a picture.
When my daughter was one year and three months old, she stopped breastfeeding, and I started working. During the day, her grandma helped take care of it, and at night we took care of it ourselves. At that time, the boss’s child was two or three months older than my daughter, and I found that his child knew a lot of things.
Although my daughter can also recite Tang poems and sing children's songs, there are many things that we cannot teach her, and she is not interested.
Apart from family members, she also doesn’t like to play with children. Sometimes we guide her to play with children, but after a while, she silently walks away and plays by herself.
(When my eldest daughter and I were young)
During the Spring Festival of 2015, we took her back to my mother’s house for New Year greetings.My sister's child, who is one year younger than her, took the initiative to play with my daughter. But when she saw her brother, she acted like she was crazy. She yelled at the top of her lungs and waved her hands to signal you not to come near me.
was so scared that my brother ran under the table. I was also stupid and didn't realize there was a problem. I also laughed at my brother for being timid.
My husband noticed something strange about the child. After returning from New Year's greetings, he said he would take the child to the hospital for a checkup. At that time, I didn’t think the child was sick, and I scolded him: “You are sick, right? What are you looking at? What’s wrong with the child?” My husband insisted on seeing me, and said that as long as he wasn’t autistic, it would be fine.
Finally, we took her to Jining People's Hospital. At that time, she still had language and some cognition. The doctor gave her a test and diagnosed her that the child was fine. It may be that she didn't go out much in the winter. After spring, she would go to kindergarten and have more contact with children, and she would gradually get better.
(When the eldest daughter was a child)
After we returned home, we always felt that something was wrong with the child, so we went to the hospital again, but the doctor still said it was fine. We hurriedly changed hospitals, and the doctor said he wasn't sure. If he was worried, he should go to the Provincial Children's Hospital.
So, we went to Shandong Qilu Children’s Hospital, and the doctor gave the result: degenerative severe autism, accompanied by severe intellectual disability.
When I got the diagnosis result, I was very confused. The doctor asked us to be mentally prepared. The child was not mild, but regressive. She might regress like a baby within three months or six months. She might regress like a baby. I can’t do anything, I don’t understand anything.
When I heard what he said, my mind went blank and my whole body was shaking. I only saw the doctor's mouth moving. I couldn't hear what he was saying clearly, and tears were streaming down my face.
I can’t figure out why a good child gets sick, and won’t even call his parents in the future.
My husband helped me to the corridor, where I held the child and cried.
(the silent eldest daughter)
How is this possible? My child is so good, so cute, so beautiful, how could he get such a disease? I want to understand what is wrong with the child's body that causes her to be like this.
we start to do various checks. During the MRI, the doctor asked her not to sleep for several hours and to do it early in the morning, so he woke her up in the middle of the night.
We stayed in a hotel in Jinan. It was very dry with the air conditioner on. She was thirsty at night and got up and said: Dad, I want to drink water. At that time, my daughter could obviously speak! Will she stop calling her mom and dad from now on? Thinking of this, my heart hurts terribly.
My husband seems very strong and has always been calm. Maybe as the head of the family, he has to act very strong in front of me.
The hospital checked all the items that could be checked, but no lesions were found. We had no choice but to go home. It was the Lantern Festival on the 15th day of the first lunar month, but we were in no mood.
(The eldest daughter is very well-behaved when she is not crying)
After returning home, my husband told his grandparents about his condition. My grandparents shed tears silently, but my husband couldn’t hold it in any longer. That was the first time I saw him cry.
He held the child in his arms and said: "Even if you have a liver or a kidney, I can give it to you. Even if you try to sell it, I can give it to you. Even if it costs me my life, I can give it to you. My daughter! You have this disease. Dad can't save you."
After hearing what my husband said, our whole family burst into tears. Oh my god! What should I do...
During that time, I was exhausted mentally and physically, so I told my husband that I wanted to go back to my parents’ house to rest. But when I thought about it, my parents knew they would be worried, so they called my sister and two best friends. You can hide it for a while, but you can't hide it forever.
I still remember that the three of them did not say a word to comfort me that day, nor did they mention my daughter's condition. They just drank a lot of beer with me, sang with me at KTV, cried with me, and laughed with me.
After a few days of going crazy like this, I packed up my mood, cheered up, and prepared to go home and take my child for rehabilitation.
(Our husband, wife and eldest daughter)
Maybe everyone’s life is not perfect, and there will be many ups and downs. My ups and downs are my children.We parents of special children all hope that our children will be cured even if there is only a little hope. However, the hope is so slim.
Not long after the child was diagnosed with autism, she developed a rash again, and her whole body was covered with dense red spots, so she was taken to the hospital for more than ten days.
As a result, the injection caused her cardiac enzymes to increase and her liver function to be damaged. In the end, there was no place to stick the needles on her hands and feet. The child really suffered during that time.
The rash gradually healed, the child's spirits improved, and we began to work on rehabilitation seriously.
Children are undergoing rehabilitation in an institution. They have seven classes a day and need to be accompanied by their parents. There are two one-to-one training classes, one sensory class, and group classes such as music class, sensory class, precision class, and floor time.
(The eldest daughter was crying while doing sensory integration training)
The child was very repulsive at first, especially during the last training class, she kept crying. It was the fastest degenerating stage at that time. Her mood was unstable every day and she cried continuously for a month.
started crying when she opened her eyes in the morning and continued crying until she went to bed at night, but she couldn't sleep well and went to bed very late at night.
I cry when eating, crying when drinking water, crying in class, no matter what I do, I cry, cry loudly, roar, moan, just keep crying.
Her father was working at that time, and I took care of her alone. I felt that my nerves were fragile and I couldn’t survive. I thought, otherwise I should take her with me and not suffer in this world.
After hearing about my child’s condition, several of my husband’s classmates came to my house to get together. After knowing my thoughts, his best classmate scolded me, saying that I had no right to decide the life or death of my child, and that I could not be so irresponsible to myself and my child, but that I had to face it with strength.
After being scolded by my husband’s classmates, I took my children to do rehabilitation seriously. The years from three and a half to six years old were the most severe years for her regression, from having language to having no language at all.
(My eldest daughter and I)
Gradually, she can no longer take care of herself. You may see her urinating and defecating in the living room, kitchen, bed, and table. During that time, I was really broken and powerless.
also has severe behavioral problems, including screaming, biting hands, bumping his head, and self-mutilation. Especially the scream, the sound is sharp, thin, high, and very harsh. When anxious, they bite their hands, bump their heads, or cry and roll around on the floor.
doesn't sleep day and night. He likes to walk around outside and at home. Another thing is to destroy. For a period of time, there were no glass products in the house. Whenever I saw a cup or a bowl, I would pick it up and throw it. I really like to hear the sound of glass falling to the ground and breaking.
When she bites her hand, she can bite the back of the hand to bleed and create calluses. I tried many things, including putting gloves on her hands and bandages on her hands, but nothing worked. Slowly, I developed the skill of quick hands and quick eyes. When she was in a bad mood, I took precautions in advance.
(Except for her parents, the eldest daughter did not have any playmates when she was a child)
When the hand biting was the worst, my mother felt very distressed. I remember one time, when my mother was holding her, she felt unhappy for some reason and bit her hand hard.
My mother burst into tears, put her hand on my daughter's mouth, and said, "Baby, if you bite grandma, don't bite yourself. It won't hurt you if you bite grandma..."
I have done various things with my children over the years. Almost all kinds of examinations were done, including MRI, EEG, genetics, metabolism, intolerance, and metal. I have also visited various experts, and they all said that this disease is an "immortal cancer" that cannot be cured and cannot be cured. The only way is through rehabilitative intervention.
I was not superstitious before, but I have begun to believe in the metaphysics of "seeking a doctor in case of emergency". Whether it’s science or metaphysics, my daughter has never gotten better, and she no longer knows how to call me “Mom.”
She is a very slow learner. The teachers in the institution are very serious and responsible in teaching, but she just doesn't understand.
Once, the teacher cried when talking to me about her children. She said that she had worked very hard to teach, but the children still couldn't do it. She even doubted her business ability and felt sorry for her child.
(husband and eldest daughter)
Although he is a slow learner, after years of intervention, some of the child's bad behaviors have disappeared, but he is still not able to take care of himself completely.
Now she can eat with a spoon, but she can't use chopsticks and is still more active. During the meal, she would suddenly stand up and want to leave, but I would catch her in time and tell her to sit down and finish eating before leaving.
She can now go to the toilet by herself. She can also wear slip-on shoes, but she can't tell her left and right feet. She can also wear pants, but she can't tell her front and back, so she needs help from us adults.
This is progress for us. The average child may be able to teach it once or twice, but she learns things in years and must be guided patiently over and over again.
When we first went to a rehabilitation institution, we didn’t have a disability certificate and we had to pay tuition. Later, we got a disability certificate and the Disabled Persons’ Federation gave us a rehabilitation subsidy, which relieved our financial pressure.
She has been speechless for 9 years now. My goal is not to make her speak. I just hope that her cognitive understanding can be improved.
(When she is not crying, the eldest daughter’s smile blooms like a flower)
After all, she is mentally impaired. She cannot understand many words and understand many things. Her cognition is not up to standard, and I do not expect her to. Like other children, she can read and write. I just hope that she can take care of herself in the future.
Since my child was diagnosed, I have no job, no social life, and accompany my child to recover every day. The whole family is living under a cloud.
's functions are deteriorating day by day when facing children. People around her are pointing fingers, and some people even laugh in front of her face. My parents and parents-in-law all hope that I can have another healthy child to relieve the family's depressive atmosphere and bring some joy to the family.
I also want to have a healthy and normal child, and I also long for a happy family atmosphere, but I am also very worried. What should I do if I have another child with special needs?
A parent I met at a rehabilitation institution also suggested that I have another baby. She said that we face children like this every day. They have no social interaction and no normal life. The children are autistic and the parents are almost autistic.
(When the sisters were young)
Growing up in such an atmosphere will not help her recovery. Only when parents are happy can children be happy.
I think of so many years, because the child is sick, ordinary children are not willing to play with her. If there is another child, she will have a companion. If unfortunately another child with special needs is born, one will be raised and the two will be raised as well. So, I mustered up the courage to have a second child.
When my sister was just born, I felt like I had a psychological problem and wondered if I had "won the lottery" again. I always feel that everything is wrong with my sister, and I am almost depressed. Fortunately, God is kind and my sister is normal and healthy.
’s kind and lively sister brought a lot of joy to the family. My parents finally had smiles on their faces. The family atmosphere was no longer depressing, and I also enjoyed the happiness of being an ordinary parent.
My younger sister is 6 years old. She is very good to her sister. She always protects her unconsciously and watches her carefully when going out. Although the elder sister does not know her, she likes to be with her very much. She is her only friend and playmate.
(Two sisters exercising outdoors)
In the past 9 years, I have stayed at home full-time to accompany my child in recovery, and the financial burden of the family has fallen on my husband alone. A friend once suggested that I start a self-media business, but I refused at the time because I didn’t want to expose my children to the public, and I didn’t want others to point fingers at us.
It is difficult for one person to please everyone. No matter what I do, there will be people making irresponsible remarks. I am afraid that others will say that I show off my children, consume my children, and use my children to make money. I'm more afraid that other people's rumors will drown me. At the same time, the face of both parents must be taken into consideration. They do not want too many people to know about the child's condition.
My husband made some money doing his own work in the past few years, but he lost a lot of money in the years when he was wearing masks. Now I am a Didi driver and sometimes do food delivery. Life is very difficult.
My parents are getting older and their health is not as good as before. Both my father and mother-in-law need to take medicine for a long time. Faced with the pressure of "having an elder and a child", I also want to have an income and reduce the burden on the family.
(6 years old, lively and lovely little daughter)
In March this year, I started doing self-media, and I also wanted to tell parents through this matter not to feel embarrassed about their children. Our child is just sick, she has done nothing wrong to others.
I am not trying to gain sympathy, but I am truly recording my life, and I also want to give some help to special mothers like me.
The video I posted received some concern and encouragement from some people, but there were also many people who said bad things about it.
They said I was selfish and gave birth to a younger sister so that my younger sister could take care of her older sister in the future. My husband and I want to live as long as possible, and we will carry our sister until we can no longer carry her.
Here, I also hope that the country will have better policies for special groups in the future, so that families like ours can have a safe place to send their children without worrying about their children being wronged.
If there is no such institution, we should be pessimistic and find ways to take the sister away the day she cannot be taken away. The burden will not be placed on the sister.
(The eldest daughter is 12 years old this year)
When my sister grows up, she will have her own circle and her own life. I hope that my sister can become the person she wants to be in the future and live the life she wants to live.
Ordinary people may not be able to imagine how much pressure and pain a special family like ours must endure.
This disease is still an unsolved problem in the world. If it cannot be detected in prenatal screening, it will not be cured for life. We also hope that a medical miracle will occur in the future and children's diseases will be cured.
There is a probability of getting sick. Unfortunately, I won the lottery and gave birth to a child with special needs. But I hope everyone can be considerate and give more understanding and tolerance to special groups like us.
is also less discriminatory towards our children. They are actually the kindest people in the world. Even if you beat her and scold her, she will smile at you.
If you see such children on the road, or in public places, if you see children with strange behaviors, don't be afraid, they will not hurt you.
(I am in Qingdao)
Their hearts are the purest. Even if they grow into their twenties or thirties, become middle-aged or elderly people, there is still a little baby living in their inner world. They are truly kind and deserve to be treated with tenderness and kindness.
"When God closes a door, he will always open a window." When ordinary children grow up, they may fly away to pursue their dreams, but children like my sister will always stay with us and depend on each other. For us, isn’t it a kind of happiness?
[Oral: Xiao Xie]
[Written by: Qingzhu]
[Editor: Zui Hongyan]
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(*This article is compiled based on the oral narration of the person involved, and the authenticity is the responsibility of the narcissist. Friendly reminder from this account: Please identify the relevant risks by yourself, and do not blindly follow the trend and make impulsive decisions.)
