Photo courtesy of Peng Zhuoxi Willy poses with his parents after participating in a folk orchestra.
Autism is a lifelong neurological disorder that begins in early childhood. Regardless of gender, race, or socioeconomic status, stigma and discrimination associated with neurological differences have long hindered the diagnosis and treatment of autism. Currently, autism is high around the world, but there is still a lack of understanding of the disorder, which has a huge impact on individual patients, their families and communities. On the occasion of World Autism Awareness Day on April 2, Peng Zhuoxi and Li Chunyan, a couple raising autistic children, shared their experiences with UN News, hoping to take this opportunity to let more people know about autism, the situation of autistic people and families, and their needs and expectations for society. Please listen to the report of special correspondent Du Jia.
Photo courtesy of Peng Zhuoxi Young Willy.
William Peng was born in Houston, USA, in 1993 and was diagnosed with autism at the age of 5.
Li Chunyan: "Although Willie speaks, there is no meaningful, conscious communication, and he does not speak in large paragraphs. He expresses his requests in very simple words, and when he doesn't need you, he simply ignores you. He doesn't destroy other people's worlds, but he is in his own little world. ”
Peng Zhuoxi: "After being diagnosed with autism, after checking the Internet, it can basically be said that the sky is falling." Because by definition, it is a slowed understanding of the brain, and it is a lifelong pathology. That is to say, it is likely to accompany for life, and there is no way. ”
This diagnosis brought a huge blow to Willie's mother Li Chunyan and father Peng Zhuoxi. The two felt that the child's prospects might be very bleak, and although they were worried, they were not desperate.
Li Chunyan: "Of course, the biggest worry is that he can't take care of himself, so he has to put him in an institution and let others manage him." You know, let someone else take care of him, you don't know what kind of person he can meet. This is the biggest worry! ”
Peng Zhuoxi: "Although the official appraiser sent to our house told us very tactfully, in view of Willy's situation, it is recommended that our whole family learn mute language, because it is likely that it will not be able to express and communicate meaningfully with you and the rest of society for life."
"But it soon occurred to me that he was just over five years old and I didn't think he was completely hopeless. When people are five years old, the brain is still in a stage of high development. So we refused to go to that dumb sign language class. We began this long process of confrontation and resistance.
"I have always thought in the back of my heart: 5 years is not good for 10 years, 10 years is not good for 15 years. Sooner or later, he will be able to maintain at least his basic survival and be able to have this ability. Even if he has this ability in 20 years, or even 30 years, he can still live with dignity for another 30, 40 or even 50 years. ”
Photo courtesy of Peng Zhuoxi Parents and brother celebrate Willy (middle) on his birthday.
Willie's parents believe that everyone grows throughout their lives, and even if there are obstacles and slow progress, everyone has hope to continue to develop for the better, and their children are no exception. As a result, they read a lot of materials, and Peng Zhuoxi also participated in the teacher training of special education in almost all school districts as a parent, cooperating with schools and professional counselors, and treating children's rehabilitation training as part of daily life.
Peng Zhuoxi: "Because Willie couldn't understand the teacher's words at all, the school specially sent a teacher's assistant in the first semester to pull Willie to follow other students in class and do things together." In addition, speech rehabilitation, and various adjunctive therapies began to be included in Willie's curriculum.
"What helped me the most was that after Willie's first semester of training, the school adjusted the teaching program again every semester, thinking that the current strength was not enough, and they decided to send a dedicated home rehabilitation trainer to our home, twice a week, for two hours at a time, just to teach Willie how to deal with some problems in life."
"This home therapist was very patient to teach Willie how to wear a T-shirt, how to tie her shoes, and even how to clean up after using the toilet in front of us.
Photo courtesy of Peng Zhuoxi Willie sent flowers on his mother's birthday.
In addition to learning basic life skills and communication skills at home, Willie's father firmly believes that in order for autistic children to truly learn the real skills, they must go out of the house and observe the world with their own eyes and how the people around them interact. Therefore, parents should create all the conditions for their children to get out of their homes.
Peng Zhuoxi: "Basically, my principle is: since he can't speak and doesn't understand the outside world, then I won't stay at home except for eating and sleeping." I took him to the children's playground to observe, and although he ignored it, there were still so many children playing there. I try to put him in a crowded place, hoping that the surrounding environment can have a subtle impact on him.
"I am also very grateful for the kindness of the community, especially strangers who have never known each other. On many different occasions, on trains, on planes, in supermarkets, especially when everyone waited for the elevator, everyone did nothing but wait. I usually look at which person is more smiling, kind-faced, and approachable, then I will take the initiative to walk over and say: I'm sorry, I'll disturb you, look at the little boy standing in the distance, that's my son. He has a language development problem, can I trouble you to come over and say hello to him. Everyone accepted it gladly, very happily accepted, and walked over to shake Willy's hand, clapping his hands and saying something in their own way. In the course of more than ten years, I have not tens of thousands of times, and I can no longer remember how many people I have invited, and not a single person has refused me. ”
Willie's parents realized from the knowledge they learned and their own experience that although the language expression and comprehension ability of autistic children lag behind ordinary people, their inner world and real cognitive ability far exceed their own expression ability, and parents need to carefully care for and dig.
Peng Zhuoxi: "As long as parents have a correct attitude, do not give up on your children, do not give up any little bit of hope, our children can hope to get better." ”
Li Chunyan: "I think parents must first ensure the health of their own souls, not only must their souls be healthy but also have hope, and they must have a sunny life and sunshine in their hearts." We are still on the road of life, and every thing we encounter, whether good or bad, is a learning process. ”
Willie's parents have always believed that their children are the greatest blessing that God has brought them. Every small improvement of a child is the greatest reward for parents.
With the help of his family and society, Willy not only completed all the basic courses of public school, but also learned to play the piano, play the cello, and joined the local Chinese folk orchestra. He also did a lot of volunteer work in the church, which was recognized by everyone and increased his self-confidence. After graduating from high school, he joined Walmart under the guidance of a career development agency for people with special needs. Willie has been working very hard for years.
Photo courtesy of Peng Zhuoxi Willy attends his brother's graduation ceremony with his parents.
Today, the 30-year-old Willie is not only fully self-reliant, works independently, but also can express his views in both Chinese and English.
Li Chunyan: "He himself can know what his position is. He can face his flaws and know that he is different from others. But he doesn't feel that he is worth less than others. My initial expectation for him was to know the address of his home, and then I thought that he would be able to take care of himself and go to the bathroom by himself. He was even able to drive himself, which was beyond my expectations. I felt like I saw a lot of miracles in him. ”
Peng Zhuoxi: "He has become a self-supporting person. Last December, the two of us left the house for 35 days. He goes to work alone, can arrange some of his life well, and basically he already has the ability to live independently. I am pleased with this. He did not become a burden to society. Although he is only a porter of Wal-Mart, he is supporting himself by his hard work and with his own hands. Throughout Willie's upbringing, we did not receive any other government assistance except for elementary school, except for the large amount of government funding in elementary school, especially any subsidies for special groups in adulthood. We always wanted him to be a self-reliant person and not a burden to society, leaving limited resources to those who were worse off than him and needed more money. ”
Willie's parents told us that there are no miracles on the road to autism rehabilitation, but perseverance is a miracle. I hope their stories can make autistic children and parents see hope, believe in the infinite potential in children's lives, and believe in the miracle of life.