Hui Hui (pseudonym), born on 20 14, is now in the second grade of primary school. Everything was fine until she learned of her illness. Her mother, Ms. Zhang, did not receive any complaints from teachers and other parents.
Hui Hui attended this well-educated public primary school in Tianjin, which is also the original residence of their family. She is no different from other children. She receives the teacher's education at school every day and goes home for dinner and homework on time.
Considering that Hui Hui suffers from chubby Willie syndrome, Ms. Zhang hesitated again and again, and went to the school and the teacher to confess the child's illness, hoping to get an understanding.
The school knows little about chubby Willie syndrome, although it can't be called "talking".
"Your children should go to special education schools, and it is not appropriate to stay in ordinary schools."
The school euphemistically replied to Ms. Zhang that the situation in Hui Hui would "disturb" other students and it would be more appropriate to go to a special education school. Considering that this is also the advice given by educators, Ms. Zhang decided to go to a special education school first.
After a period of investigation and school experience, the situation of the school did not meet Ms. Zhang's expectations. In special schools for disabled children and adolescents, no attention is paid to cultivating children's learning ability.
A parent told her that their children also suffered from rare diseases and transferred from ordinary schools to special education schools. After a few years in a special education school, the child is almost an adult, and his listening, speaking, reading and writing abilities have dropped significantly, and he can't even write his own name. At this time, no ordinary school is willing to accept children.
The original intention of these parents in choosing schools for their children is to enable them to receive more appropriate and targeted education, thus helping them reach the academic level of their peers. At present, the level of special education schools is uneven, which can not cultivate children's sufficient self-care and self-reliance ability.
After some consideration, Ms. Zhang hopes that Hui Hui Neng will receive an education in an ordinary school. After the school knew her choice, it gave them several ideological work.
Ms. Zhang consulted the Education Bureau for relevant policies and sought suitable solutions. The Education Bureau told them that they could choose a school with integrated education for Hui Hui.
Integrated education means that special children can enter ordinary classes for undifferentiated learning, help them enhance communication and interaction, and promote social development. This is a new policy in recent years, and it has not yet spread to the masses.
In the area where Ms. Zhang lives, there is no school that provides integrated education. Then the problem of children's enrollment falls into a cycle.
"Educators can't jump out of the fixed mode of thinking" and gain 20 Jin a month.
In order to create a good learning environment, Ms. Zhang's family moved from Tianjin to Dali, Yunnan. When Ms. Zhang arrived at her new home, the first thing she did was to visit a suitable school.
"It's only been more than a month. This is the third school I changed." Ms. Zhang confided her difficulties.
In every negotiation with the school, Ms. Zhang will inform them in advance that Hui Hui suffers from chubby Willie syndrome. Hui Hui, unlike other children, needs more snacks from the teacher.
After learning about the specific situation in Hui Hui and agreeing, Ms. Zhang sent her children to a local private school with confidence. Judging from the experience of children after entering school, it is still not satisfactory.
The first teacher said that Hui Hui's learning level couldn't keep up with the progress of Grade Two, and proposed to give Hui Hui two extra hours of classes after school, and the cost of one class was 600 yuan. Ms Zhang agrees with the growth of Hui Hui.
Teacher's after-school care is not a one-on-one model. She has to look after children of kindergarten age, so she can't give Hui Hui time to attend classes alone.
Every day, Ms. Zhang spends her money, but Hui Hui doesn't learn anything from her teacher. Teaching can't reach its due value. In this case, the teacher's performance becomes a sub-item of the school.
The environment of the second school is beautiful, and the conditions in all aspects are far better than the last one. Miss Zhang has only one request for her teacher, so please control Hui Hui's appetite and stop giving her rice.
Children with chubby Willie syndrome, their overeating in appetite is one of the biggest troubles for their parents. This requirement was not taken seriously by teachers in Hui Hui, and their understanding of chubby Willie syndrome was not sufficient.
With the connivance of the teacher, Hui Hui gained nearly 20 Jin in one month. Now, Ms. Zhang has to urge Hui Hui to increase exercise and lose weight as soon as possible.
"As an educator, you can't jump out of the fixed mode of thinking." Teacher Zhang pointed out the ideas of ordinary school teachers.
Teachers' attitude towards children with rare diseases is still the same as copying past experience. Ms. Zhang reminded them that Hui Hui can't eat more, but the teacher boils down to the fact that parents are strict with their children's body shape, or it's normal for children to be fatter.
Parents will naturally be prepared for the health problems of patients with chubby Willie. In the eyes of outsiders, there may be many misunderstandings because of ignorance. Misunderstanding will push the relationship between teachers and students to the other extreme, which parents and parents do not want to see.
Family education and school education cannot complement each other, and chubby education needs attention.
Family education is the biggest part of the life of chubby Willie patients, and it can't be a supplement to school education. This is the problem.
Schools should not shift their due educational responsibilities to families, so that chubby Willie patients lose the right to study in ordinary schools. As well as the discrimination they encounter in class collectives, we should attach great importance to it and correct it in time.
The difficulty in communicating with schools is not only a challenge faced by families in Hui Hui. Most of the other families interviewed by the reporter poured out their worries.
Some parents of chubby Willie patients responded that their children would be bullied by their classmates at school. After they reported the situation to the teacher, it didn't get better. What's more, the teacher directly chose to ignore it.
In order to choose to take care of children, in many families, one spouse has to give up his job and devote himself to the company of children. When children reach school age, they often bear more mental stress.
With the growth of age, chubby Willie syndrome has brought mental retardation, argumentative, emotional instability, ADHD, inattention and other problems to patients, and its symptoms can not be summarized in a few words.
Any behavior or emotional loss of control of chubby Willie patients will inevitably be attributed to the children themselves by the teachers. The complexity of chubby Willie syndrome leads to the cold reality that patients are rejected from school and forced to drop out of school.
To be sure, it is definitely not a suitable solution for school education to selectively avoid patients with chubby Willie syndrome. How to uphold humanistic care, overcome obstacles, and make chubby Willie patients not lonely on their way to school is worth thinking about!