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Yesterday, Lele ended his study in Xuanwu District, Nanjing special education schools for the first week. And the new school compared to the 7 year old little boy Gongbanxiaoxue still prefer the original, but he could not go back.
Lele in the classroom is not "as good as gold" - at least in the teachers, students and parents in the eyes of the case. He likes to leave his seat, often disturb the students, even in the classroom piss ...... In fact, this and that he suffers from an extremely rare disease. Lele is only mucopolysaccharides Nanjing patients. Cruel yes, the disease around the world so far no effective treatment of the parties.
Worried about education, employment pressures facing their own children in the future,http://mattboo.com/forum.php?mod=viewthread&tid=93420, parents of other students aside initial sympathy, combined together, requires the "disruptive students" turn away. Thus, a matters of ethics and tomorrow's "war" in both parents, middle school started.
Newspaper reporter Gu Yue Fei
An accidental falls, the children found suffering from an incurable disease
Suffering from mucopolysaccharidosis,http://phpwind.hkcnidc.com/read.php?tid=4761048&ds=1, the body lacks an enzyme
Metabolism can not be normal, patients with organ damage
7-year-old child, was sentenced to 15 years of age may not live
When last Friday, reporters arrived Lele home, this little boy to a special school go to class. "It's also scary than leukemia, leukemia can bet, and the opportunity we have not even bet!" Lele's father, Mr. Tang introduced from mucopolysaccharidosis terrible.
Tang's father in the next supplement, but not long ride, 78-year-old man got up to the back room. Soon, took out two framed photographs, "we are talking about is this little guy," the old man look fondly looking at photos of grandchildren.
This is a memorable boy: the first is particularly large, prominent forehead, wearing black-rimmed glasses, looking at camera shy. By the way, the children head also Dr. Dai Zhao cap. This is when a child photography, most parents would choose props. Even suffering from an incurable disease, but the family still hope Lele and peers have the same tomorrow.
At least two years ago, Lele addition to talking a little later, the difference is not large, and peers. May 22, 2006, because of an accident a few days before the fall Lele, Mr. Tang took him to Children's Hospital in Nanjing film examination. When the children had a bath, my mother has found the back of the spine Lele Central has an oval-shaped mass, the family of the child's illness faint worry.
An hour later, the doctor hurriedly put the couple shouting past, solemnly asked the couple's physical condition, both family medical history, and to solicit the views of parents give their children an additional postural film project, Tang consent. After another tough one hour, Mr. Tang was shouted the doctor's office, the results of glare film to the words "mucopolysaccharidosis" list.
This is a disease that most doctors never seen, let alone the treatment. Constitutes the connective tissue mucopolysaccharide such as skin, bones, ligaments and other support structure of the main component of our body. Because the patient's body is missing an enzyme that makes the metabolism of mucopolysaccharides can not proceed smoothly, so as to gradually damage the patient's organs.
Mucopolysaccharides children in infancy with normal child is no different, but generally after two to three years old, will gradually appear special rough face: head larger than normal, large lips, tongue thick, abdomen due to liver and spleen enlargement and loose and prominent organizations, joint stiffness, intelligent gradual degradation ......
Currently, none of the world to find effective treatment of mucopolysaccharidosis's side. Developed ways to use more bone marrow transplantation, but the disease usually occurs in patients before surgery began. After the onset of symptoms, most doctors recommend to give up treatment, because even take the surgery, the chances of success are minimal. And because high surgical risk, the child on the operating table, the parent is likely to lose him this forever.
At present, the domestic only Beijing, Shanghai, Guangzhou and other places can be treated mucopolysaccharidosis. With three children ran removed a year later, Mr. Tang had also expected to "gamble", but because the symptoms Lele has emerged, missed the best timing of surgery, Mr. Tang had to recognize the reality,hogan scarpe donna, painfully abandoned the child's treatment. Doctors said mucopolysaccharides patients rarely live beyond 15 years of age.
These bow to reporters, the Tang tears in the eyes edges. He worked in a large company in Nanjing and held important positions included import and export business. During the day, Mr. Tang spoke fluent English and international counterparts to negotiate, control of the company's lifeblood; while at home, in the face of their own powerlessness son. Huge contrast between life and let Mr. Tang's eyes lost their original strength of spirit, and when people talk, he probably has his head down looking at the material, rarely confront each other's eyes.
Tang's work unit in Jiangning daily commute to have a very long time. In recent years,hogan uomo outlet, on his way home from work,http://www.corelearningunit.nhs.uk/item/create_form/1, the middle-aged men often sad Nan Yi was crying all the way.
He became the "most unpopular" pupils
Due to illness should urinate every half hour
Can not mention his own pants, but also unable to control "hyperactivity"
7-year-old child, a complaint "we can not do in class."
Lele totally do not know the big people's grief. In this seven year old child's world, no rules, no face, but do not know how delightful. Saw the thermos and a power outlet, Lele sometimes unconsciously touch, for these dangerous objects, the little boy was not afraid of instinct.
His shy, timid, like a sheet of white paper in general. On the way home from school, special education schools, Xuanwu District, Lele listen aunt said the family came a reporter uncle, the little guy is interested, he can not wait to go home, while climbing stairs she asked her aunt: "The uncle is not also wear glasses? "
Lele's home on the third floor, even though their parents have good jobs and income, but because all these years to treat the child, has three homes have more than 70-year-old grandfather and grandmother squeeze in a old house. On the same floor, four families and opened the door of a relative, Lele home is easy to recognize, the other three households are upscale security doors, but only his family still on the old iron gate of the 1970s and 1980s.
The door opened, a 1.2-meter-high, bespectacled boy standing in the doorway, reporter forced himself not to look at Lele bulk and prominent forehead. Little guy with a sheepish eyes looked under the glasses on the bridge of the nose reporter, then quickly out of the way. Lele listen to her aunt's instructions, whispered greeting: "Hello, uncle!" Later, he found a remote control car door on a reporter brought a stool, the little boy suddenly rushed up: "wow!" - In addition to tall to short half-head outside, it seems, there is no difference Lele's temperament and age of children.
After spending three years in kindergarten carefree time, last September, Lele into the home near the designated school admission. Tang did not hide the child's condition, his child's illness and treatment written in a written statement provided to the school. He said he does not expect children to learn how much knowledge, but hoped that his son could have a full life experience. Like a normal child like school, is regarded as Lele Tang life experience is the most important part.
Father beside nodded yes. Lele's condition when diagnosed, the whole family crying face, the veteran said: "Since he came to this world, the need to make our hearts, to be kind to him!" Since then, "treat" became the family Lele treat principle.
Lele assigned a grade class, because of short stature, he sat in the front of the classroom. But the school did not take long, my grandfather would pick Lele school teacher's receipt of the complaint: Lele often left their seats, still in the classroom to urinate, seriously affecting the teaching order. To make Lele is not class time to urinate, he was not allowed to drink water every morning, breakfast with bread, mostly dry food like bread, but to little avail. When the shuttle Lele, grandfather often told: Today in class, Lele and peed in the classroom.
Thus began the dwarf a poor little boy, it seems like more and more from students and teachers. When the school day, he saw my grandfather came to pick Lele, naive students will twitter "complain": "! Today Lele also criticized the" "take your pants off, he ran over the classroom, and made us no way to class," teacher is is angrily told the elderly.
Many people do not know that urine is actually no way to control Lele. Mucopolysaccharidosis a direct manifestation is urinating much, Mr. Tang explained pain, almost every half an hour, Lele must urinate once a 40-minute lesson each section of Lele it does seem a bit long.
As a classroom full of kids pants off run, it is more misunderstood. Tang took Lele's hand to reporters, it was a pair of curved inwards little hands can not be straightened because mucopolysaccharidosis, Lele particularly severe carpal tunnel syndrome, "This is not even to mention pants hands had no strength, He can not deliberately take your pants off. "
Lele illness no waist, Tang determine the child's pants fell down, and he was not any bother to mention, so the students thought he was bullying. As Lele run a classroom full of bare buttocks to understand his son's father judgment: It may feel lonely and Lele related child is not a complete expression, but there needs emotional communication aspects of a classroom full of run finally attracted the class attention, mostly to take Lele usually difficult to obtain in the class existence and identity.
Thorough understanding of these outsiders have no patience. In the classroom,moncler sito ufficiale, slowly, from the first row of seats Lele moved to the last row.
Parents of other children boycott transfer request
His "trouble" attracted dissatisfied parents of other children
His father,hogan outlet italia, a parent will find any
7-year-old child, normal IQ but only to special schools
Beginning last year in November, in order not to affect other people, Lele only a half day every day. Afternoon home, my grandmother taught languages, retired aunt to help teach mathematics.
Grandpa had to find schools expect to be able to read with, but was rejected by the school. Lele's "trouble" did not stop, so, parents, school Lele contradiction parents and other students to become more acute.
In the end, this year on October 17, contradictions concentrated outbreak. 15:00 the same day,http://web.csd.sc.edu/cgi-bin/codebook/search.cgi, Mr. Tang notified the principal,hogan interactive 2012, that is to communicate with parents and seven or eight under, but came to the school conference room and found that 29 students in the class, in addition to several parents something outside, to the 24 Parents of students.
One into the conference room,hogan store, Mr. Tang feel the unusual atmosphere, he said he was apologetic to go, after all, Lele affects everyone. After the president's remarks Background, Tang sincerely introduce Lele and his suffering of mucopolysaccharidosis to all parents - he said he does not expect to get everyone's sympathy, but at least be able to win some understanding.
Tang did not say a few words, and soon, a matriarch sitting next president interrupted his tone very simply: "? We have today did not come to listen to them, we want to hear how to do" "You do this to us Children unfair ...... "" We did very well at home before his daughter, and now the results fall much ...... "" Your child does not have studies and employment pressure, and our kids have; you put the child on the side, too selfish ...... "" From tomorrow onwards, no longer allow (Lele) into two (a) classes, our children can not afford to drag ...... "
Like bombarded, several matriarch turns to speak, every word let Tang on pins and needles. So far,http://www.aptnsw.org.au/cgi-bin/show_blog.cgi, the parents will feel more like Tang struggle sessions, on-site, he stubbornly responded: "You want commitment, how could I give you what promises!" But in the end, when the president announced a few meetings opinions to the effect that After Lele will not be allowed into the classroom, the school will provide a reading room to Lele one class,hogan interactive beige, etc., common knowledge Tang hastily promised,hogan italia, he was anxious to escape the scene, "do not want to stay for a minute."
Special education schools to become Lele no choice. Previously, principals and several contacts, the principals have said: "In order to Lele happiness, especially school may be his best place." And said that the principal Xuanwu District special education schools are their classmates,hogan interactive blu, he can learn presentation .
However, special education schools do not want to enter it into the. Schools need to provide proof of disability and intelligence, in addition to disability, students enrolled in the school IQ below 70. But Mr. Tang took the children in Nanjing Brain Hospital to do the test, Lele's IQ is 97, does not meet the special conditions of the school into the school.
IQ tests to finish after Lele, Nanjing Brain Hospital doctor Chen Tang couple aside, vocal meal "swearword": "Children IQ is no problem, you do the parents, so why should give him wear a hat? "standing in the hospital hallway, fighting back stronger Tang suppress tears.
Under the collective parents said to "strike" the pressure, Xuanwu District Board of Education involved in the matter, and ultimately coordinating Xuanwu District Special Education School "everything" to recruit Lele school. From last Monday to start, followed Lele third grade students attending the school, the class had five children: two autistic children, plus two children suffering from cerebral palsy mucopolysaccharidosis Lele.
Although there is no self-esteem and logical analysis capabilities, Lele or perceived difference between the two schools, before going to bed every night before he would allow her mother to the next day's textbooks and red scarf ready, but only on a special school for a week class, Lele will no longer clamoring to go to school, one day he even said to his mother: "I do not want to go to school today."
About the Lele, the father is not all painful memories. Experts, suffering from mucopolysaccharidosis children have some special talent, he will focus on the average person does not concern. In addition to the map, poetry interest, the Lele particularly interested in the most recent off water bottles, six bottles at home, he would give them one sorted according to their own standards. No water bottles in the water,http://www.health8.com/cgi-bin/yybbs/yybbs.cgi, Lele is always the first to discover, jumping with joy that he told his father: "! Dad, there's a bottle hungry."
Parties say
■ parents of other students
Although off too harsh, but he also is not good lesson on how to deal with our children academic pressure
Other parents collective opposition is Lele leave primary fuse. Parents say the same for parents, beginning very sympathetic, but then the children "often on bad lesson", taking into account the academic pressure faced by children in the future, I hope Lele's parents to thoughtful consideration, both to Lele a a better place, but also has other students a quiet learning environment.
The two sides deadlocked at the occasion, the parents had joint letter to the Nanjing Bureau of Education. In the letter, the parents say, when most start Lele assigned to their children in the class,http://www.75thrra.com/report/activity, many of his class moves on to everyone caused some impact, but after all the parents, "one can see that the poor child looks always feel that if you let him go too harsh, so say wait and see,hogan interactive blu, maybe then he would have been better. "
Starting next semester grade, after several rounds of consultations, Lele every morning only to half a day. "But this solution did not play any good effect," the parents said that when Lele class still noisy, even worse than sophomore year one, "every day we hear most parents is that children back After the family tells us that today's lesson we are not any on the finish, because Lele and wailed in the classroom. "
Parents find the school leadership so many times, and gives let Lele transfer, placement and other suggestions, "After all our children in the future will face a huge academic pressure if time did not lay the foundation school, how can face the future intense competition for the community. "
■ Principals
Unwilling to give up a child, but for a child or for 28 children, a dilemma
More than 20 days ago, "Lele incident" at the school wrangling, the talks collapsed because the parents, and some parents even have to "strike." The school principal has repeatedly expressed a "dilemma" situation during the interview with this reporter. He said that this is in fact a child in the class and 28 children the right balance.
President introduced last year when the enrollment,scarpe hogan donna outlet, the school had been informed of the special circumstances of Lele, consider the principle "do not give up a child", the school gave Lele issued admission notice. But I did not expect after Lele enrollment leads to so many things come later.
President introduced Lele there are several issues: urinating in the classroom, school Shihai sometimes play "Little Sparrow"; often inferior, even out of the classroom; often take things to the students, etc., affect your learning.
Chancellor said that teachers have to reflect on these issues and more, and said that because a person Lele, resulting in the class curriculum can not be completed on schedule.
He said the school of Lele's condition is very sympathetic, but can not because of a child and the other children in the class. Therefore, some parents complained to the Nanjing Bureau of Education, which makes the school very difficult. Chancellor did not explain the reasons do not allow parents to read with, but said it would Xuanwu District Education Bureau under the leadership of, and properly solve this problem.
■ Lele father
Just want to let the children experience the full process of life do not want to let his short life full of censure
Why insist that for children in primary school enrollment normal, Tang explained:. "Just to let children experience a full life process."
He said the reporter contacted him before the interview,scarpe hogan interactive, there was also a reporter to call him, but on the phone, he put the other party chatter meal. The strong sense of self-defense executives of large companies, so he felt the other side is for the love of many parents.
In Tang's eyes, Lele despite suffering from an incurable disease, but as a parent, he hoped that his son be able to fully experience life. His side while wiping away his tears, said: "Since there is this fate with him (Lele), we must be worthy of him!" So, from small to large, Lele as long as you want, Mr. Tang couple always give everything.
The couple is not low wages all used in the Lele body, cure, buy clothes, buy toys, etc., even if the unit is a colleague, but also less people know, normally dressed in front of them, "Don always", has also squeezed in his father's old dorm room. Unit difficult every year subsidy, but had never seen Mr. Tang application.
During the interview, Mr. Tang often said, Lele is a pure and children. In the eyes of seven-year-old boy, no evil and bad, and he was faced with a start from their parents, to my grandfather, grandmother, aunt, etc., are the smiling faces. This has to go to school after the "trouble", the next place in the classroom urine, disturb the students, etc., perhaps in his world, which is not necessarily a bad thing.
Tang said he would criticize Lele: "Today you misbehave again, you have done something wrong," Lele would say that, but education ends here. Mr. Tang does not want kids brief life history, filled with too much advice and censure, he still want their children to maintain his original white one state, flies happier.
"You see, the little child named 'Lele', meaning that way." Nickname referred to the origins of his son in more than seven hours of conversation, Mr. Tang rare to smile. (To protect the privacy of the parties, especially the text faded real name and school)
■ look forward to your voice
One child and 28 children's "Tomorrow," How do we choose
More than seven hours of interview time, Lele hiding in the back room to play, but almost every over 20 minutes, will be able to see this little boy out from the back room, humming a song to go pee. Adult world worried, sad, and he completely unrelated. "They say we selfish, that our children do not have education and career pressures, everyone knows ......" Tang painfully paused, "not knowing that our children will face off live from the life pressure!" Tang said , mucopolysaccharides patients rarely live beyond 15 years, the couple had figured uncertainty about the times, looked up only to find heartbreak, just this little boy is only seven years old, and even has gone through in the second half of his life time.
Faced with a white child in general, not like normal school peers, for him, is a cruel fact repeat itself, not to mention he was destined to die in a few years, patients suffering from rare diseases; But another side, classmate 28 children's future can be expected, parents fear is not without reason. These parents are just determined to put aside the instinct of sympathy for the children fight for a quiet reading environment. Maybe you can blame the parents utilitarian,http://www012.upp.so-net.ne.jp/ad-lib/bbs/index.cgi, but this happened on any one person, it is estimated half past one would not think of a better way. As a parent, said: "Yes, I sympathize with you, but I do not want their children to have such students." For children, both parents looks confidently.
This dilemma makes the heart tangled. Where is the best classroom Lele? How to treat children with Lele rare encounter? Schools, both parents in the performance of this incident, how to evaluate? If you are one of them, how will you solve similar conflicts?
Readers are welcome to call our hotline 025-96096 post your suggestions, opinions.
I always feel that people of wisdom, can always find a solution to party. Gu Yue Fei