Rainbow "Star" Art Troupe, founded at the end of 2017, is the first art troupe composed of autistic children in Fujian Province.
Autism, also known as autism, is a neurodevelopmental disorder that occurs in early childhood. Because patients seem to live on their own "planet", they are often called "children of the stars."
Zhang Xiuli is the founder of this art troupe and the mother of an autistic child. She believes that autistic families not only have to fight against autism itself, but also face social stereotypes. For a long time, she has been advocating that the public have a correct understanding of the autism community and give them more tolerance and understanding. Later, she thought: Why not let the children come out and show it themselves?
At the beginning, Zhang Xiuli not only had to face issues such as venue, funding, and sources of musical instruments, but also faced the opinions of autistic families on the performance: most autistic families are unwilling to show up in public, fearing strange looks from society. After
mobilization, they recruited some autistic children who were willing to participate. However, because children with autism have relatively high emotional fluctuations and relatively weak teamwork skills, they each perform their own roles during rehearsals, and rehearsing the repertoire is even more difficult. Zhang Xiuli did not give up, and the instructors of the art troupe changed again and again. After seven years of running-in and training, Rainbow "Star" gradually developed into an art troupe that can successfully complete various performances.
In the beginning, no one signed up for the art troupe. Now, as soon as the course is released, the venue is full. Parallel to the development of Rainbow Star Art Troupe is the development and growth of autistic children.
In Zhang Xiuli’s view, the art troupe not only helps autistic children, but also brings a ray of light to many families who are trapped in the quagmire of autism. Let autistic children express themselves through music, show themselves through performances, and affirm themselves through applause.
The following is Zhang Xiuli’s self-report in an interview with The Paper.
The original intention of founding: I hope that children will stand up and advocate social attention.
I am the mother of an autistic boy, Wangwangzai. 11 years ago, in the pediatric care department of the hospital, I emphasized to the doctor over and over again that my child could sing and recite Tang poems. He was just a little slower than others, but he was still diagnosed as autistic by the doctor.
At that moment I felt like the sky was falling. Holding my son's hand, I walked out of the hospital door in despair. The world was filled with sadness, and many people looked back at me with tears streaming down their face.
In the following days, I rushed to three different rehabilitation institutions every day, racing against time. I was taught in the institution and at home. In order to train his reaction to activities, I even called his name when I went to the bathroom. Until one day when I was giving him a bath, I poured water on him with a kettle, and I asked: Wangwangzi, do you want more? He said: Yes. At that moment I was ecstatic, and I seemed to see the light of hope in the darkness again.
However, one day in the community, several children saw my son and said in disgust: We don’t want to play with fools, he is a complete fool. At that moment, my heart felt like tearing pain. Indeed, the lives of children of the same age are colorful. They go to kindergarten, attend interest classes, and have many friends. However, these seemingly ordinary things that should be taken for granted are like an unattainable dream for autistic children. Due to insufficient social tolerance and acceptance, their parents gradually blocked or narrowed their original circle of relationships and walked alone with their children in their own little world.
According to statistics, the number of autistic patients in China has exceeded 10 million. Different autistic patients feel the same sadness and helplessness. They urgently need to find organizations that can understand each other so as to obtain more information, communication and resource support.
There are many autistic families around us. They are anxious, hesitant, isolated and helpless, with no hope. They really need some senior parents and experts to share with them so that they can avoid detours.
Starting in 2014, I tried to do online charity and use my spare time to provide help to parents of autistic children.At that time, I established a WeChat group with 500 parents of autistic children. I would often ask some experts to share in the group. I paid for all the money, and parents would reward them if they benefited. Another enthusiastic parent collected these donations to help extremely poor autistic families.
In 2017, I learned about the story of "Sister Xiaogeng Achieves Forrest Gump's Dream". Sister Xiaogeng is an advocate for the rights of people with mental disabilities and initiated the "Integration in China" project. Encouraged by this, I led some autistic parents to initiate the establishment of the Fujian Xinqihang Disabled Assistance Center to implement the "Integrating China" project. As the first mutual aid organization for autistic parents in Fujian Province, I hope to fight for more rights for "children of the stars" so that people with mental disabilities can enjoy life with dignity.
On the Autism Care Day that year, we did some lectures and performances in the shopping mall. At that time, my son performed with his classmates and performed a sign language dance. I found that when children participate in programs, the social response is very good.
Then I thought: If children with special needs join this show, the performance will definitely be better. Compared with asking ordinary children to advocate for autism, it is definitely more powerful and more touching for autistic children to advocate for themselves.
I actually don’t understand music, I am a music novice. But I know that music can cultivate life and improve the happiness index of life. When I go for a walk, I listen to my favorite music. The emotions of autistic children are very important, because if a child has emotional problems, he cannot bring them out. Having emotional problems can affect the environment, harm yourself, and harm others. Music can heal the soul and can heal these children. Currently, rehabilitation institutions do not provide education in this area.
How about setting up an exclusive band for autistic children? Just do it, and it will start later.
A photo of Xiuli and the band.
Difficulties abound: Some teachers feel frustrated and quit
a public welfare project. In fact, it is the same as someone giving a speech on stage. There is no audience in the audience. I found the sponsor, the venue, and the coach, but I couldn’t find anyone to serve. The first is that autistic parents don’t believe it, and the second is that they think the children who come here are autistic and refuse to come because they are afraid of being labeled.
There is no need for autistic families to hide things. That is self-deception, and others cannot help you even if they want to. It is very important for parents to step forward, with an optimistic attitude, scientific intervention methods, and the courage to face reality.
Our earliest hope is to find some children with musical foundation. Of course, to be honest, there are really not many requirements for autistic children to have good abilities and parents to be willing to step forward.
Later on, the children of key parents on our board of directors, including my son, were “charged”. If our children sign up for classes outside to learn these musical instruments, they won't accept the money, because the level difference is too big and the teachers can't teach them. Sometimes teachers are not willing to pay more. It is not easy to produce educational results, the teacher feels frustrated, and it also affects other children in class.
We hire professional teachers from art training institutions, but they have no experience in teaching children with special needs and have no contact with autistic children. We will tell them the characteristics of these children, give them a simple science popularization, and let them reduce the difficulty of teaching and slow down the pace of teaching. It was very difficult at the beginning because the teacher didn’t understand the children, and the children didn’t understand the teachers either. This requires adjustment and time.
Although the first children to join the band had some basic knowledge of musical instruments, some could play the piano and some could play the drums, they did not know how to cooperate. I can’t schedule a show for half a year.
For example, the Hulusi band we established is very difficult to train because the band needs to coordinate well. It is relatively easy for us ordinary people, but difficult for autistic children. Hulusi is not like a percussion instrument. You can teach him step by step. Hulusi is completely played by blowing. It is difficult for the teacher to explain, and it is difficult for autistic children to understand. They completely rely on their own perception of the breath flow.
training is definitely not easy. The teacher didn’t know these children very well at first. For example, they had emotional problems and would run away if they couldn’t sit still.Therefore, teachers will use the token system during class and give them some small items as rewards. For example, if they stamp a few stamps, they can exchange for something, or if they stamp a few stamps, they can leave get out of class early. Then they will break down the teaching content one by one, step by step. teach. We also need to know how to cooperate and understand the rules. In the past, when we were on stage, the children needed us to adjust each other's positions and postures, and we always had to force them. Autistic children often look around, allowing them to correct themselves from a relatively disorderly and confusing process. This requires constant teaching and patience. The first three years of
were particularly difficult because you couldn't see any performance results, and because you couldn't produce a finished program, you basically spent three years training.
For these special children, it was really hard for the teachers to teach them, and they also felt frustrated. The band changed several teachers. The teachers we are able to stay with have also persisted for a long time. They are particularly caring and have a sense of social accomplishment. He was a young man when he taught us, but now he is a father.
On April 2, 2023, World Autism Awareness Day, the drum performance team performed.
went from frequent situations to competing for performance.
has been trained, but whether it can perform smoothly is another matter.
I still remember that the first performance of this band was on April 2, 2019, World Autism Day, at Taijiang Wanda Plaza in Fuzhou. The children performed "Farewell" on ukulele, the band performed "The Brightest Star in the Night Sky", and the drum set performed "We Will Rock You". Hulusi requires breath control, and Hulusi could not be performed at that time.
It is nothing for an autistic child to perform alone, because autism is inherently self-centered, but these children can now perform in a group. This is very important and not easy.
I was at the scene and was very nervous. After the performance, the audience gave good feedback, and I breathed a sigh of relief. I felt deeply at that time and felt that all my efforts were meaningful.
Since then, Xin Qihang’s interest classes, including art troupes, have been particularly active in registration. If you are late, there will be no place for you. In the past, I would mobilize them and beg them to come. Performances after
were not always smooth, and problems often occurred. Once, a child suddenly lifted up his clothes during the performance, but luckily his belly was not exposed. There was also the most embarrassing time when a girl suddenly had to take off her pants during a performance. There have also been cases of children picking their noses on stage and suddenly screaming.
At this time, we will quietly take him off the stage without paying too much attention, just pretend that nothing happened and comfort him.
It was our first time to attend the Fuzhou TV Children’s Spring Festival Gala because we didn’t have that much money in previous performances and we had never seen such gorgeous lights. We usually just set up a stage or whatever, and getting an LED screen is already a luxury.
Finally, we arrived at the TV studio hall. The lights there were so gorgeous that our children were a little distracted before we entered. Lights can also irritate their eyes. That event was not a live broadcast. During the filming several times, the child was out of shape and looking around. These are all growing experiences.
On January 26, 2022, Xinqihang Rainbow "Star" Art Troupe was invited to participate in the Pingtan Spring Festival Gala performance.
had another performance that left a deep impression on me. In the Provincial Radio and Television Studio Hall, the children have prepared two songs, one "Childhood" and one "Your Answer". It turned out that the live music was played in the wrong place.
I'm so nervous down there. The event attracted a lot of attention and was broadcast live on many TV channels. What I didn't expect was that the children were almost unaffected, no one talked to each other and continued their performance. Later, the music was changed back and the performance was successfully completed.
These are special children. They have no distracting thoughts and are self-centered. If they are normal children, they will definitely mutter: Why did we play the wrong music? This is not easy, and I am deeply moved.
Another time, my son Wangwangzi participated in the June 1st Red Flower Music Festival. He played the snare drum. Maybe there were too many people that day and he was so excited that he knocked over the snare drum next to him.Because it was live broadcast, we didn’t dare to go up and help. I was so anxious in the audience, but I didn't expect Wang Wangzai to pick up the snare with his foot, flip the snare back, and then continued to play the drum and continue the performance. He was able to save himself, and the scene didn't feel out of place at all.
"Wangwangzi" kisses his mother Zhang Xiuli.
In fact, these special children are just like us normal people. We will be nervous when we go on stage for the first time, but you won’t be nervous after ten times. The same goes for these children, who need constant opportunities and training.
"Only when parents come forward can children have a better future."
Now these children are more confident, and there is almost no performance situation.
Now all the normal activities of our heart are full once they are released. After several years of hard work, from the beginning when not even a single team was full, now there are about a dozen public welfare classes that are all full. The Rainbow "Star" Art Troupe now has a ukulele performance group, an electroacoustic band, and a choir, all of which were established by us. There are 5 drum classes and 3 Xindi piano classes.
We have participated in many large-scale performances, including the opening ceremony of the China Foundation Forum, Tencent Little Red Flower Music Festival, and the Fuzhou Taiwan Children’s Spring Festival Gala. We have been invited to perform in many large-scale events, and we also hold many such events every year The social response to the event was pretty good.
Most of these kids are much better now than before because they have performed more often and they need to keep being given opportunities. This is an affirmation of their value. They sometimes ask me who performs better on stage and whether there is any bonus or red envelope for this performance.
In the past, their parents were not very willing for their children to show themselves in public. Now I would love to participate in this kind of performance. They also found that this kind of performance improved the children's self-confidence, and there were improvements in aspects such as getting on stage, waiting, performing, and queuing.
Then we will also give the children a subsidy of 30 yuan or 50 yuan. The children are very happy, which is an affirmation of their value. In the past, they had no concept of money, but now they have begun to understand a lot of their own. Of course, the recently held World Autism Awareness Day Blue Care Action does not have money. Let the children know that not all contributions are paid, you are doing voluntary services, and Autism Awareness Day is a special holiday.
Many autistic parents have a very serious sense of stigma, and I understand that. We have been advocating that parents should first step forward. Many times, when a child becomes autistic, the parents also become autistic.
Autistic children are also social beings and will not be separated from society. Just like a fish wants to swim in water, an autistic child is also a fish, but he is not adapted to the water here, so he appears to be out of tune with society. Just like freshwater fish living in salt water, we try to reduce the salinity around us. When an autistic child behaves out of place, please provide some tolerance and support. Sometimes turning a blind eye is also a form of support.
Many people said to me: Wangwangzi’s mother is very brave and dares to face autism head-on. In fact, I am not brave at all. When my child was first diagnosed, I did not dare to tell others. Later, when I moved from Shenzhen to Fuzhou, a new city, I began to face my child and autism head-on.
As someone who has experienced this, I give them advice: work hard to change what can be changed, accept calmly what cannot be changed, and reconcile with yourself and autism. Only when parents step forward can their children have a better future.
