Mother of an autistic child: I even hope he walks in front of me

  Zhongxin. com, Beijing, April 3 rd:Mother of an autistic child: I even hope he walks in front of me

  Author: Yang Yuqi

  What kind of helplessness makes a mother want her child’s life to end before herself?

  Facing her 6-year-old son Tong Tong (a pseudonym), her mother Bai Li (a pseudonym) bluntly said, "I even hope he can walk in front of me … …”

  Bai Li, 35, is the mother of an autistic child. Four years ago, after her son Tong Tong was diagnosed with this disease, Bai Li’s life seems to have embarked on a long-distance running without an end. Now, she is accompanying her children to try her best to find hope in a hopeless situation.

  Why doesn’t he call me mom?

  On May 28th, 2016, Tong Tong celebrated his 3rd birthday. However, in the eyes of mother Bai Li, since the child was born three years ago, he has said less than 100 words to himself and looked directly at his parents less than 100 times.

  "The child is almost 2 years old, but he has never said a complete and coherent sentence, and even the number of times he called Mom and Dad is extremely limited." Bai Li began to wonder whether Tong Tong had a language barrier.

  But soon, Bai Li found that things were not that simple. Tong Tong is not only abnormal in communication, but also different from other children of the same age in eyes and behavior.

  "There is no response to calling his name, his eyes are always erratic, playing with a toy wheel for a day, and even yelling without warning." Bai Li began to search on the Internet to see if these seemingly weird behaviors were normal reactions of a 3-year-old child. However, countless conclusions point to the same noun — — Autism.

  What is autism? Sun Menglin, deputy director of the Autism Rehabilitation Committee of China Disabled Persons’ Federation Rehabilitation Association, explained: "Autism is also called ‘ Autism ’ It is a developmental disorder of the nervous system, which is mainly manifested in social communication and communication barriers, narrow interests and rigid behavior patterns, and most of them occur before the age of 3. "

  After much hesitation, Bai Li and her husband decided to take Tong Tong to the hospital for examination. On July 13th, 2016, the family came to Beijing Anding Hospital. After a series of tests, Tong Tong was diagnosed with autism.

  Bai Li would rather believe that this was a misdiagnosis in the hospital. A few days later, she took Tong Tong to the Sixth Hospital of Beijing Medical University and Beijing Children’s Hospital for re-examination. However, the nightmare of autism has finally become a reality. At that moment, Bai Li was like a bolt from the blue.

  My husband and I broke down and cried.

  Since Tong Tong was diagnosed, it took Bai Li half a year to accept this reality. What caused the son’s misfortune? Bai Li blamed herself.

  Facing the young Tong Tong, Bai Li couldn’t help blaming herself when she watched him hang his head and say nothing, even like a plant without feelings: "Is it because I ate uncooked mutton kebabs when I was pregnant? Or is oxytocin overdosed during production? "

  In fact, children as unfortunate as Tong Tong have become an increasingly large group. Recently, the Multicolored Deer Autism Research Institute co-founded by Sun Menglin released the Report on the Development of Autism Education and Rehabilitation Industry in China 3.

  According to the report, the incidence of autism in China has reached 0.7%. At present, there are more than 10 million people with autism spectrum disorders, including more than 2 million children under the age of 12. According to the latest research data in the United States, the incidence of autistic children has increased from 1/88 in 2009 to 1/45 now.

  What is it that makes autism come to these young souls? Sun Menglin said: "At present, global medical research cannot determine the cause of autism, and there is no medicine to cure it. The disability rate is extremely high, and it may be accompanied for a long time or even for life."

  In Bai Li’s small family, with the growth of age, Tong Tong’s illness became more and more serious. When he is anxious, he will bite his mother’s hand hard until her mother screams pain. Throw the pillow out of the window when you lose your temper, or even drop all kinds of appliances at home for no reason.

  Bai Li still remembers a "war" that broke out at home when Tong Tong was four years old. In the middle of the night, Tong Tong suddenly became agitated and kept yelling in bed. Dad, who had to get up early the next day, couldn’t bear it. He rushed into the room and beat and scold Tong Tong.

  "You fight, fight to the death, and kill him." Bai Li thundered at her husband.

  "Yes, I am relieved to kill you." The husband answered with tears.

  Sometimes, just because Tong Tong lost his temper, Bai Li and her husband can break down and cry.

  Visible burden, invisible pressure

  Like every family with autistic children, the most realistic problem facing Bai Li’s family is the treatment for Tong Tong. It’s like a long-distance race with no end in sight, looking for hope in hopelessness.

  In order to alleviate Tong Tong’s illness, Bai Li tried various methods, such as western medicine treatment, Chinese acupuncture, and even various online remedies, and spent countless money.

  Even though taking care of Tong Tong has overwhelmed Bai Li, she still dare not quit her job to take care of her family. In October 2016, in order to alleviate the child’s illness, she sent Tong Tong to a rehabilitation institution for children with autism. And the treatment fee of 18,000 yuan per quarter is overwhelming the whole family.

  In addition to paying the quarterly rehabilitation fee, she also signed up for a 20-class "Oral Muscle Training" course with a asking price of 12,000 yuan for the child’s language recovery. According to Bai Li’s calculation, plus miscellaneous expenses, it is difficult for the couple to leave a deposit for their monthly salary of over 10 thousand.

  In fact, Bai Li’s family conditions are the envy of many colleagues. Both husband and wife are native Beijingers. Before their children were born, the school districts for attending famous schools were all ready, but who would have thought that the school districts were useless and the originally excellent life was greatly reduced.

  "If it weren’t for the children, our income wouldn’t be so low." Bai Li said that in the face of many opportunities for company promotion, she deliberately gave up: "Promotion means greater work pressure, but children will get sick if they don’t see me for a long time."

  Indeed, in the eyes of my mother, Tong Tong is a clingy child: "One day I came home from work two hours late, and Tong Tong couldn’t sit still. I opened the door and kept calling my mother to the empty corridor."

  Spending is a visible burden, but what makes Bai Li more sad is the invisible pressure around her.

  Once, Bai Li and Tong Tong shopping mall met a strange child, and Tong Tong wanted to greet each other, so she hugged the child’s head with all her strength. In the eyes of the other parents, this scene has become an invisible injury: "You let your son bully others in public?"

  No matter how Bai Li apologized, the mother scolded Bai Li and pushed Tong Tong to the ground. Bai Li said that she cried the most sadly that time.

  How to go to school in Tong Tong is a big problem

  Today, Tong Tong is studying in an autism rehabilitation center. Before entering the rehabilitation center, Bai Li sent Tong Tong to a public kindergarten in August 2016, but this plan was overturned a month later.

  Because Tong Tong doesn’t adapt to lunch break, she always makes noises or even screams when other children are sleeping, which leads Bai Li to be called to school every week, asking to teach her children not to disturb others’ rest. Therefore, Bai Li had to take Tong Tong home after noon.

  Soon, Bai Li received another video from her teacher. In the video, all the children are playing games around the teacher. Only Tong Tong is hiding in the corner of the classroom with a small bench and does not participate in any classroom activities.

  "The teacher only sent me the video, telling me that children can’t study here and should consider sending it to a school for the mentally retarded." Bai Li said.

  However, it is not easy to get into a school for the mentally retarded. After contacting a mentally retarded school many times, Bai Li got the reply: "The mentally retarded school mainly serves children with mental retardation, and autism is not mental retardation."

  "Students with hearing impairment, blindness and intellectual disabilities have places to go, but children with autism have no way to go." Bai Li said.

  Now, Bai Li is anxious: rehabilitation institutions only accept children under 7 years old, and seeing that her son will be 7 years old next year, can normal primary schools accept Tong Tong? Can the mentally retarded school accept Tong Tong?

  I even hope he walks in front of me.

  Family expenses, children’s schooling, and even when they are old, what about life in Tong Tong? Regarding the future, Bai Li can’t even imagine.

  According to a set of data in Report 3 on the Development of Autism Education and Rehabilitation Industry in China, 10% of the autistic patients in China have been assessed as mild, and these people can live independently, enter the society and take up jobs.

  70% of the patients are assessed as moderate, and they can often take care of themselves, understand social norms and live independently with limited assistance; Another 20% of patients with severe autism rely entirely on family care, and it is a "luxury" to take care of themselves.

  Zhang Jishui, deputy director of the Department of Psychiatry of Beijing Children’s Hospital affiliated to Capital Medical University, explained that at present, China’s assistance to autistic children is still in its infancy.

  At present, Zhang Jishui suggested that parents can enjoy a certain degree of subsidies or subsidies according to local policies.

  Zhang Jishui explained that generally speaking, children with mild autism can enter normal schools, while children with moderate autism should consider entering integrated schools or taking parents to accompany them. However, if they are severely autistic, they can only receive education at home.

  "It is very important to rebuild children’s confidence, discover hobbies and cultivate their skills in intervention treatment for autistic children." Zhang Jishui said.

  In addition to the immediate difficulty in entering school, how to ensure the future life of the child has become Bai Li’s lingering concern: "I think that after our death, the child may not even be able to take care of himself. Sometimes I even hope that he can walk in front of me so that I can arrange everything for him."

  Nowadays, Bai Li began to consciously cultivate children’s skills. When cooking, she always puts the child beside her: "Even if he will sell his own pancakes in the future, I can rest assured."