Shanghais star parents are hard core: to set up a monitoring center for their children to guard them for a lifetime (source: ~)
Sword hanging in my heart
For more than twenty years, Zhou Lianghuas heart has been hanging a sword, which may fall at any time, shattering the happiness in front of him.
Zhou Lianghuas house is clean and spacious, with elegant furniture. If Bohan happens to be practicing the piano, there will be a melodious sound of the piano in this suite of rooms. Bohan looks attentive, fingers are flexibly moved on the black and white keyboard, eyes are bright. u2014u2014 This is the happiness Zhou Lianghua carefully maintains.
But under this happiness, worries flow.
Bohan was diagnosed with autism when he was 3 years old. Zhou Lianghua and his wife resigned to take care of him. However, just letting the children live a normal life is not all the couple expected. At the end of last century, the talent of Down syndrome children Zhouzhou in the field of music made many families of special children glimpse a ray of light in the dark. Zhou Lianghua also found that his son was very interested in music, and he and his wife were greatly encouraged to guide him to the piano.
Now, Zhou Bohan is studying in the Department of Music Education of Shanghai Conservatory of Music. He has won many awards and is often invited to perform around the world. In the eyes of parents, this is already a miracle.
However, Bohan still has no ability to take care of themselves. Zhou Lianghua and his wife, who are over 50 years old, are constantly worrying about one thing: if they lose their mind or die, what will their son do?
Bohan, 22, is half a head taller than his father. He can speak normally and take care of himself in daily life. But autistic children still have insurmountable obstacles in their way of thinking and behavior. They will always live in their own world.
For example, Bohans behavior is rigid and inflexible. In winter, Zhou Lianghua opens windows and ventilates in the absence of Bohan. After Bohan entered the door, he could not feel the warmth or cold, and he did not know to close the window. He took off his clothes and began to play the piano, even when he was frozen. Before going to bed every night, Bohan must drink every drop of water at home clean, otherwise he cant sleep at ease.
In addition, Bohan has no concept of money at all. His parents have been teaching him to settle accounts, but up to now, he still cant understand the concept of buying things and finding money.
Zhou Lianghua and his wife once thought about entrusting Bohan to their relatives and friends after they lost their ability to take care of them. But what happened around them changed their minds.
We have seen an autistic patient in his forties, whose immediate guardian has passed away. Uncles and uncles are fighting for custody, but they are fighting for custody only for real estate. There is hardly any real visit to him, that is to say, to let him die on his own. Zhou Lianghua said.
The story we are talking about now may be the future of Bohan. If, without any preparation, my mother and I suddenly disappeared, it would be a disaster. Zhou Lianghua was worried.
Save against a rainy day
The plight of Zhou Lianghua and his wife is also the ultimate problem faced by parents of all autistic children. They must prepare for the rainy day before the most worrying things come true.
According to the General Principles of the Civil Law of the Peoples Republic of China, which came into effect in October 2017, social organizations can become guardians. This means that parents of autistic children can entrust a social organization as the intended guardian of their children after their parents are mentally retarded or die. As intended guardians, social organizations will take the place of parents, manage and expend property for children and sign important medical decisions for children.
After learning about this regulation, Zhou Lianghua seemed to see a glimmer of hope. In his view, social organizations survive longer than individuals, make fairer decisions and are subject to social supervision. Give the children to the guardianship of social organizations, so that parents feel more secure.
Zhou Lianghua looked for such organizations everywhere, but found that such professional organizations did not exist nationwide. He decided to take the lead in setting up an organization, and the idea was echoed by many parents of autistic children. Soon, more than 90 parents of autistic children signed up as volunteers and temporarily referred to the organization, which placed all their hopes on it, as a monitoring center.
In January 2019, the monitoring center began its trial operation. The first step is to conduct regular visits to some children with autism who are facing difficulties. Volunteers enrolled first, and classes were arranged by Zhou Lianghua.
Poetry at the age of 18 is one of the objects visited. Poetry parents divorced, mother reorganized the family, father with poetry life. Last year, Shishis father suffered from cancer and was sick in bed. He could no longer take care of Shishi. He had to send her to a foster care Park in Minhang District to serve mentally handicapped people. Supervision Center was entrusted by the father of poetry, visiting poetry regularly.
On February 19, Wang Chunyan and two other volunteers visited poems and poems, and the journalists went together. Poetry and poetry have almost no language ability. Volunteers can only judge her living condition through her behavior. The snacks brought by the volunteers were eaten immediately after the poems were opened, and they could not stop eating. Have some control over her diet, or she can eat all the time, and she doesnt know shes broken. The foster park staff said.
Usually, in addition to three meals a day, poetry is to watch TV and learn manual labor. In a handicraft class, the poem deskmate suddenly slapped her on the head, Wang Chunyan saw this scene, quickly discouraged the deskmate and said, Dont bully the poem, everyone should get along well with each other.
When Wang Chunyan came out of the room after the visit, she couldnt help her tears.
If my parents are gone, I dont know who else in the world can really care about them. Every time I visit them, my heart is very, very uncomfortable... Wang Chunyan sobbed. Our parents save themselves first, but their personal strength is still very limited. I hope the society can give us more support.
In addition to children in institutional foster care, visits to the monitoring centre also include autistic children living at home and in difficult circumstances. On February 20, volunteer Ji Jun and his son visited Feifei, an autistic patient.
Ji Juns son is less than 20 years old, but Ji Jun thinks long-term: My children want to be visited in the future, so we should serve others first now.
Ji Juns visiting object is Feifei, whose parents divorced. For more than 20 years, her mother led her life by herself, and it was difficult to say a word. The regular visits of volunteers made Feifeis mother feel less isolated and helpless. Mother Feifei was envious of Jijuns sons ability to conduct basic daily behavior and language communication. In contrast, Feifei has no language ability, can not take care of herself, and sometimes even self-mutilation.
Every day I pray for Bodhisattva, let me be better, let me live more years, so that she can be in charge of... Mother Feifei said.
Feifeis mother is over sixty, and she dares not think about the future. I had imagined that when I got old, I would let my daughter go to the nursing home with me. Later, as soon as I inquired, the nursing home was not willing to accept people like her. Mother Feifei sighed helplessly.
In the process of visiting, Ji Jun had to fill in a form on his mobile phone, which included more than ten options about the living conditions of the visitors, all of which were designed by the volunteers themselves.
Whether there is a response to the call, whether there is food to eat, whether there is care around when visiting, whether there is damage to the face, whether there is damage to the limbs. Feifeis condition is normal. Mother takes good care of her and looks good. Ji Jun confirmed it one by one according to the form.
After the visit, the volunteers also uploaded mobile location and related photos and videos on the spot to prove that they did come.
At present, the monitoring center has been running for three months, and the volunteers have conducted more than 40 visits. Visiting is not only a kind of care, but also a kind of deterrence. The foster care institutions of children can see that children are not completely neglected. Many people care about them and come to visit them at any time. Zhou Lianghua said.
Zhou Lianghua also summarized the visiting records of each visit: On the one hand, we can let the parents of the visiting objects understand the situation of the children more clearly. On the other hand, it is for the reference of volunteers for the next visit, such as this time to see the children are very happy, but the next time to see the children are not happy, maybe there is something wrong.
I hope you will be alive in 2049
In order to promote the development of the monitoring center, in February this year, Zhou Lianghua and volunteers held a seminar to let you talk about the feelings and problems in the process of visiting.
Ma Dongshuang, the parents of autistic children, is also the founder of Tongda Humanism, a public welfare organization concerned with special children. She provides data platform support for the Monitoring Center. At the seminar, Ma Dongshuang raised a common concern of parents: because the monitoring center does not yet have legal status, even if children are found in difficulties during visits, volunteers can do nothing.
We are now indescribable, foster care, nursing institutions can be polite to receive us, can not receive us, because we are not the guardian of children. Ma Dongshuang said, But if in the future this institution will become the intended guardian of children, we can fulfill the obligations of guardian according to law.
How can the monitoring center play a better role in the legal framework? Zhou Lianghua consulted Li Chenyang, a notary of Putuo Notary Office in Shanghai.
Li Chenyang has been devoting himself to the research and practice of intentional guardianship. He suggested that the supervision center should be the intentional guardian of children, and the parents of children should be notarized for intentional guardianship, and the notary department should issue the guardian a guardianship certificate. After a parents disability, dementia or death, a guardian may use a guardianship certificate to identify him or her and perform guardianship according to the agreed guardianship clause previously signed. The legal effect of the intended guardian is higher than that of other legal guardians.
In addition to Zhou Lianghua, many parents of autistic children are actively looking for ways out. Chen Jie is the mother of an autistic child, who has been engaged in autism rehabilitation training for many years. At this years two sessions in Shanghai, as a representative of the Shanghai Municipal Peoples Congress, she put forward the Bill on the Establishment of Local Regulations for Occupational Social Guardians. Now, Chen Jies proposal has become a formal one of the Standing Committee of the Shanghai Municipal Peoples Congress.
I hope that institutions specializing in the duties of social guardians can be set up, which can charge a certain fee and be managed and supervised by the civil affairs departments of the government. Career guardians have professional norms and ethics, and the state has a level of management over them, said Chen Jie. This will be more reassuring for our parents.
Now, Zhou Lianghua has begun drafting the constitution, and he hopes that the supervision center will be registered and established as soon as possible to gain legal status. Creating an unprecedented organization is a huge challenge, but Zhou Lianghuas goal is firm: Open roads on mountains, build bridges on water. We must go on, and we must make it work! Will you still be here by 2049? Bohan suddenly asked his parents during a chat. We dont know. Mr. and Mrs. Zhou Lianghua were somewhat surprised by this question. Shall we strive to live to that day? I hope you will be alive in 2049. Bo Han said. However, the length of life can not be predicted and controlled. Zhou Lianghua only hoped that if they really left, the monitoring center would be able to play a vigorous role and protect his childrens life. Source: Look at the News Responsible Editor: Xiao Qi_NN6799
Now, Zhou Lianghua has begun drafting the constitution, and he hopes that the supervision center will be registered and established as soon as possible to gain legal status.
Creating an unprecedented organization is a huge challenge, but Zhou Lianghuas goal is firm: Open roads on mountains, build bridges on water. We must go on, and we must make it work!
Will you still be here by 2049? Bohan suddenly asked his parents during a chat.
We dont know. Mr. and Mrs. Zhou Lianghua were somewhat surprised by this question. Shall we strive to live to that day?
I hope you will be alive in 2049. Bo Han said.
However, the length of life can not be predicted and controlled. Zhou Lianghua only hoped that if they really left, the monitoring center would be able to play a vigorous role and protect his childrens life.