While being whipped by reality, he is strong and optimistic
In the period before her daughter was diagnosed, the blogger "A Soybean" described his mood as a roller coaster.
Feeling that one of the symptoms is that the mood has fallen to the bottom. I also feel that a certain symptom is not like it, and I am lucky.
But when her daughter Doudou was 2 years and 5 months old, autism spectrum disorder was diagnosed.
Autism spectrum disorder is a broad name that includes both typical autism and atypical autism such as Asperger's. Previously it was called "autism".
"I'm Bean Mom. Genealogy parent, stay-at-home mom. "A soybean" often introduces itself in the Little Red Book today.
When I was very young, Doudou seemed to be just a little cold, didn't like to let strangers hold it, and wouldn't babble at others. But other than that there is nothing unusual. There are your favorite cartoons, as well as your favorite snacks.
It's just that when a few friends came to visit, Doudou, who was warmly greeted, completely ignored it. At that time, she took a toothpick and watched it like this, watching the old man for half a day until she cried.
Some friends plucked up enough courage to say that it may be autism, and It is difficult for Dou Dad and Dou Ma to accept speculation. But the truth is that until the age of 2, Doudou still can't speak, and in early education classes, she often doesn't cooperate enough to make Doudou collapse.
After becoming more and more sure that her daughter was autistic, Dou Dad and Dou Mom talked all night long, hugged their headaches and cried, and felt that life was hopeless. The two men pretended to be calm, talked about the division of labor after the diagnosis, and comforted each other.
In fact, autistic parents "are not lonely." According to the "Report on the Development of China's Autism Education and Rehabilitation Industry III.", the number of existing autism in China exceeds 10 million. This means that the number of parents of autistic people is more than 20 million.
In some places on the Internet, these strangers who understand each other best encourage each other and learn from each other.
They are looking for ways to "cure" their children. I am also looking for ways to heal myself.
Pressure everywhere
The first time in Beijing Children's Hospital, the son test results were 4 points away from the confirmed score line, and the diagnosis result was "suspected".
Unwillingly, he hung up the well-known experts of Concord and got a more clear result.
Still not dead-hearted, she went to visit an experienced foreign therapist, "I'm sorry, I think your son is autistic." The therapist said with regret but a firm tone.
"I really can't figure out why my child has autism?!" she asked.
Autism, the consensus of the medical community is incurable. Patient interventions are to be carried out for life. She felt that her life was coming to an end, and the feeling was "indescribable."
She decided to give herself 5 years, and if life is still so desperate after 5 years, then...
On September 5, 2020, she published notes in The Little Red Book under the name of "Waste Wood Mother's Diary". Four years have passed, and the so-called golden age of autism intervention before the age of 6 has also passed. But she still can't speak, and she knows that "the illusion of pretending to be an ordinary person has been shattered."
After struggling for 4 years, she decided to let go of the burden and let herself and accept the fact of autism again.
It's hard for anyone to get out of the negative emotions after a diagnosis quickly. Someone posted the child's diagnosis book with the words "Autism Spectrum Disorder" clearly written on it. "Sad for a year and a half, not out of the way, every day is being torn apart, while strong and optimistic, while being whipped by reality." 」 Notes written.
Li Xiang understands the inner ripples of autistic parents. As a development officer at the Beijing Xingxingyu Education Research Institute, which specializes in educating children with autism and their families, Li Xiang has been dealing with parents for more than a decade.
"After the diagnosis, parents are often very uncomfortable, many people can't sleep all night, refuse to believe, blame themselves, and even some people think of taking their children to the end of the road." Li Xiang said.
"There is little hope, too few responses, not many ways." Shi Gang, director of the Psychological Quality Education Center of China Agricultural University, summed up the situation of parents of autistic children in this way. "There is little hope, there is no cure for autism, which is equivalent to moving forward in the dark; there are too few responses, children cannot communicate normally with their families to establish emotional connections, and parents' long-term efforts do not even have a smiling response; there are not many ways, they can only rely on parental discovery, intervention and psychological counseling." These can bring very great psychological pressure to parents. ”
The good trend is that society as a whole is paying more and more attention to people with autism. On the other hand, "medical resources and rescue resources pay more attention to the children, and relatively less attention is paid to the parents of the children." Shi Gang said.
"If I can't cure you, then cure me first."
On the day of getting the diagnosis certificate, the doctor also listed a list of books to learn to intervene to Dou Dad and Dou Ma, and instructed, "Be fast! ”
In the three months after the diagnosis, Dou Dad and Dou Ma almost devoted all their energy to interfering with Dou Dou. After a near-de-exerting coaxing, Dou Ma almost collapsed.
She decided to change. DouMa looked at DouDou: "If you can't cure you, then cure me first."
Dou Dad and Dou Ma decided to sell the house in the county town, bought a motorhome, and took Dou Bean with them on weekends and holidays while traveling and treating.
Over the course of each journey, Doudou seems to be slowly becoming different. For example, from being indifferent to everything around you, you also began to enjoy the fun of the journey. While playing the slide, obediently lined up and learned to wait.
When these notes were sent, many parents began to ask about all aspects of the caravan trip, leaving too many messages, and Dou Mama recorded several videos to explain.
The communication with netizens often makes Dou Mama feel encouraged.
In January 2021, she met an adult autistic patient in Xiaohongshu, although she did not "take off the hat", but her life was happy and beautiful, which made her full of confidence in the future of Doudou.
After asking permission, Dou Mama sorted out the chat records into 5 notes and sent them out. Someone thanked her, "Just last night my husband and I were still frustrated and desperate about the future of our children, and reading these five articles today seems to give me strength again." Maybe parents like us really need to find some glimmer from time to time to not let ourselves fall. ”
At the beginning of 2022, Dou Mama collected the messages and private messages that touched her in Xiaohongshu in the past year into a video, and Dou Dad also participated in the dubbing for the first time.
There are encouragement from strangers in the message, affirmations from parents who have also suffered from the same situation, talk from parents with other diseases, and genealogy patients who have grown up.
"Thank you for these kind, sincere, warm messages, your words are also my motivation and make me confident in the future." Bean Mama wrote.
The "Waste Wood Mother's Diary" is also a mother, and at the end of 2021, she also made a summary of "a year with a special harvest". This year, he opened up his own closed little world and began to be willing to take the initiative to accept outside information.
And she completely recorded her year in the Little Red Book, "receiving countless kindnesses and help, each of which was an unexpected surprise and touch."
The warm and healing wind of the "waste wood mother's diary", each note is always under dozens or even hundreds of messages, some people comfort, some people bless, more is the encouragement and inquiry of parents with similar experiences.
Many messages have made my mother herself moved to like it. Someone left a message saying: "When I first paid attention to you, I was preparing to fill in the college entrance examination volunteer, because again, because you are such a cute and optimistic parent, I applied for the only special education university in the country, hoping to become a special education teacher in the future, able to help children like you from the stars." ”
The value of sharing
Li Ming, an associate professor at Beijing Forestry University, believes that sharing among parents of autistic patients on content platforms can benefit parents from each other. Because these measures or ideas have been verified by parents, they may be more valuable.
Li Ming hopes that Internet content platforms can establish self-help groups or communities to bring together people with similar difficulties and promote their sharing and mutual assistance.
In addition, Internet content platforms also need to invite professionals to publish authoritative popular science videos and pass them on to parents in a serious manner. Raise their awareness of autism and their own psychological stress.
Shi Gang, director of the Psychological Quality Education Center of China Agricultural University, also hopes that through wide dissemination, more parents can establish hope, as long as the goal is clear, "as far as possible to let children connect with the real society, interpret the child's own unique communication code, and slowly explore a unique set of communication methods, their response to people will become larger and larger, and they can go further in the direction of improving the quality of life." ”
Similar activities on Internet content platforms are unfolding.
According to the report, on the 15th Autism Awareness Day on April 2, Xiaohongshu jointly launched a theme activity with a number of institutions to pay attention to the psychological pressure of autistic patients, especially autistic parent groups.
"In The Little Red Book, many parents of autistic patients post notes and comments, encouraging each other, helping each other and learning from each other. We hope that through activities and content, more psychological industry experts and users, as well as users and users, will be connected, so that more people can get a better psychological state. The person in charge of the Knowledge Category of Little Red Book said.
At the event, the professionals invited to participate shared their knowledge on how to accept that children are autistic and how parents can mentally regulate. The notes of many autistic family members are also among them, providing a reference for more people with their own experiences.
"If the content shared by parents helps others, it can also enhance the sense of recognition of parents, so that they feel that their suffering is not in vain, and they can also give more help to society." Li Ming said.
Source: China News Weekly