We interviewed a mom of an autistic child.
The following is her self-description.
My husband and I met through blind dates, and then flashed marriage. That would have been a very good idea to have a child, 29 years old and pregnant with her first child. At first, there were some twists and turns, but for a while the body was particularly weak, and when I went to the bathroom, I felt something flowing into the toilet. I didn't know what it was yet, so I took it to the hospital and asked the doctor.
The doctor was taken aback, saying it was a child or something, and there was something wrong with the fertilized egg, and suggested that I do a genetic test.
I didn't take it seriously then and now I regret it very much.
After the miscarriage, I was probably pregnant for more than a year. This time my pregnancy was particularly smooth, 30 years old pregnancy, not counting the advanced age, 31 years old gave birth to a round circle, and it is a smooth birth.
I was physically stronger, more careful during my pregnancy, had not eaten unhealthy foods, and had not taken any medications.
I do regular pregnancy tests, and if I do find out anything out of the ordinary, I'm sure I won't give birth, it's not fair to me and the baby. But the results of each pregnancy test were normal, and I was gradually relieved.
Later, I learned that autism could not be detected during pregnancy and is currently a problem in the world. If there are some signs, my husband once had a very serious depression, and his health was not very good for a long time, and he had a history of stomach disease.
I have observed the parents in this circle, and rarely have both sides very, very healthy, and at least one of them has been sick with emotional problems. I communicated with some parents and vaguely felt that this person had some mania or other mental illness, but it was not serious, at least it could live a normal life. But I also dare not say that there is an inevitable connection between the two.
Later, a son Yuanyuan was born.
Somehow, after the child was born, his body was very poor, he was very picky eater, and he did not like to eat. More than a year old, he can't speak, his eyes don't know how to look at people, and he doesn't have any focus. I called him by his name, and he rarely responded. Take him out to play, see other children, he will not take the initiative to go over, acting extremely strange.
My work with my husband is very busy, Yuanyuan is mainly my parents in the belt, because it is a boy, I thought, maybe it is late development, just "stupid", not much big deal.
It was a very fortuitous thing to discover that Yuanyuan had autism.
We were supposed to take him to the hospital for a check-up that day, and we were looking at the gastroenterology department. Coincidentally, the doctor had a background in neurology and psychology, and when he saw Yuanyuan, he said at first glance: "Don't hang up my department first, go hang up a pediatric department." ”
Doctors speculate that Yuanyuan is autism, and gastrointestinal problems are also related to this disease. On the same day, we went to the neurology department and got the diagnosis that "your child is suspected of autism."
I didn't immediately collapse at that moment. Although I have heard of this disease, but there is no specific concept, blind optimism, since it is a disease, just look at it.
After I used my connections to consult a circle, the psychological defense line gradually disintegrated.
What crushed me was not the doctors' diagnosis, but the WeChat of many parents of autistic children, whose children are older, 4 to 7 years old, and parents are basically in a state of despair.
Parents will tell me what the status of these children is at 2 years old, what state they are at 3 years old, and what state they are at 4 years old. I seemed to see the round future and suddenly collapsed.
Autism is a terminal illness within a terminal illness, and for a child, it is basically a death sentence.
At first, I still thought about curing the disease, as long as I can look after the disease, I can sell the house, how much money it costs, and my eyes don't blink. I can't accept reality.
Yuanyuan has received drug treatment for about a year and a half, and the drugs used are basically imported, which have certain effects, such as his eye gaze has improved a lot, and he has begun to make some simple words.
He is also very hard, almost all the rumored, true and false drugs on the market, we have tried them all for him. However, I believe in science, and I follow the doctor when I take medicine, and I don't make up my own mind to try some folk remedies.
Some parents take their children to acupuncture, massage, TCM conditioning, etc., which is said to improve the stomach and intestines. These therapies may be useful for children with mild autism, but I don't expect a severe amount like Yuanyuan.
We have given him probiotic treatment, and also tried the current industry's hotly discussed "intestinal flora (fecal bacteria) transplant therapy", that is, the fecal flora in a healthy human body is transplanted into the intestines of autistic children. We did a course of treatment and saw the effect, but this therapy was just starting out in China, the price was expensive, and we didn't stick to it later.
During the time of the medical consultation, I also found an American expert, so I learned a message, now there is a kind of genetic engineering, to put it bluntly, it is like cloning a brain, implanting the neurogen or something in a normal child into the brain of an autistic child. Someone is doing this, but it's not clear if it will work. Moreover, if you want to try, you may not be able to afford it without a billion or so in your family.
Dr. Jia Meixiang of Peking University Sixth Hospital is a senior expert in this field and has studied autistic children for nearly 40 years. I took Yuanyuan to see Teacher Jia for consultation. Teacher Jia's office has some toys all year round, and she let Yuanyuan play with the toys and then listen to me explain the situation of the children. Occasionally, Teacher Jia turned his attention to Yuanyuan and shouted a few names, but rarely got a response.
Yuanyuan rarely reacts to Teacher Jia's shouts and likes to run around the table, as if he has his own small world. He uttered meaningless syllables from time to time, occasionally glancing up at me.
Teacher Jia's advice is: rehabilitation training, regular follow-up. Autism is not a cure, and both treatment and intervention delay symptoms. If left unchecked, the child's condition will only get worse day by day, and may reach the age of 20, and the condition is not as good as 1 year old.
Start behavioral intervention early, which is good for both children and parents.
After Yuanyuan was diagnosed, my parents still blamed me.
My mom took care of me throughout my pregnancy, and at first she suspected it was my pregnancy. She would recall what food I had at the time, and once she said, you ate hawthorn when you were pregnant, and maybe that's the problem. She also had a lot of criticism of me for not resigning and going home to take care of Yuanyuan, "What mother is as grinning as you and still going to work?" Don't you have to stare at him every day at home without stopping! She said.
My mother couldn't understand, or didn't want to accept, that this disease was not curable. In fact, she has the deepest feelings with my son, from the birth of the child to the age of 4, she has not left a day, so now she washes her face with tears every day, and she can't stand it when she sees my son. My relatives, as soon as they come to my house and see the circle, immediately cry. They all felt that I was very wronged and probably a burden for the rest of my life.
My husband didn't put any pressure on me. From the symptom point of view, maybe my husband's responsibility will be greater, after all, he has a history of depression and mania. My in-laws didn't blame me at all, and my husband would defend me, and he even offered to divorce me and let me have a healthy child with someone else.
My mom once secretly advised me, "You divorce him, and he agrees, right, you go find another one." I refused, I couldn't.
At the age of 3, we stopped drug intervention and began to find institutions to carry out behavioral interventions.
We just had a class at the institution and were forced to suspend classes. From other parents, I heard that Peking University Medical Brain Health has a remote home intervention class, and in order not to stop the child's recovery, I signed up.
I also followed the line for a while, and learned a lot of effective methods from the teacher, at least to ensure that the method of training at home is right, and it will not help when intervening at home. For example, everything should be strengthened in time, and also observe his response to your reinforcement.
His progress is very slow, even compared with other children in the institution, he is much behind others. In order for him to understand what a "request" is, the process of teaching alone took three months.
Occasionally, when I get discouraged, I think that the money I give is completely out of proportion to the results I receive. The money I have spent on him can buy a house in a second- or third-tier city, probably more than a million. Insisting on burning money is nothing more than hoping to do something for him, otherwise I will feel sorry for him.
Before this incident, I was a particularly social person, and when I was studying, I was both the class president and the president of the student council, and I often organized many activities. Later, I really didn't have the energy to socialize, and they also knew that they usually contacted me and never mentioned topics related to children. The year before was the tenth anniversary of graduation, our classmates held a party, no one informed me at all, you think I am the class president, actually do not know.
People don't dare to call me because they don't know what to say to me. The party was happy, and they saw me whether to laugh or cry.
Now just going to work and taking the circle takes up almost all the time. The bigger problem was that I was already very tired after work, and the thought of going home with him made me feel like a headache.
I've blamed my husband before, and obviously he has a bigger responsibility. We also had fights. In the past few years when I took Yuanyuan to the doctor, he was severely depressed again, and I was depressed for a while, and even had suicidal thoughts. I have seen many autistic families, parents gradually discouraged, but also "autistic", just want to close at home, go home and even do not want to turn on the lights.
This disease is a very test of human nature and morality. There are too many families in this circle who have irreconcilable contradictions because of the disease of children, and finally fall apart. There are many people who abandon children, so they are particularly tested. In the face of this disease, at least the relationship between our husband and wife has not been broken, but has become more and more solid.
If I hadn't taken Yuanyuan out the door and kept him in the house all the time, I didn't seem to have anything to do. However, I don't want him to be completely disconnected from society, and he also has the right to contact the outside world. I insisted on taking him out every weekend and often to the zoo because he loved animals so much, probably animals without any discrimination against him. He feeds the animals, reaches out and touches them, and gets their response.
Outside, sometimes he would scream without warning, especially harsh, and passers-by would look at him, and I had to tell others that he was slow in development and had a relatively low IQ. Most people are more friendly, but they are children, because they do not understand, see him does not respond or can not speak, will be very direct to ask, what is wrong with him?
Screaming is a way of expressing roundness, angry will scream, happy will scream, sometimes what he wants to do, but can not express, or will scream. When he screams, it's useless for you to smoke him and hit him because he can't control himself. If I only had to face my son, after getting used to it, there wouldn't be too many emotional fluctuations. However, I inevitably saw other people's families, those healthy children, and I immediately couldn't stand it, and the tears fell directly.
When you bump into other people's children, you can't talk about envy, and a sense of utter despair will come to your heart. I often wonder, how should my son and I face this society in the future?
He is still young, and he can't see that there is a problem from the outside, but when he grows up slowly, such as after the age of 6, he can see at a glance that this kind of child's gaze is very sluggish. Going out with such a child, I have no way of imagining.
When they first took Yuanyuan to consult various doctors and experts, they would suggest that it was best to have one person quit his job and go home and take care of the child wholeheartedly. I know that many parents in this circle, once the child is diagnosed, usually the mother resigns immediately, and the father is out desperately trying to earn money.
At first, our family discussed this issue, and my parents wanted me to resign, but they didn't realize the severity of the disease, thinking that if they just rested at home with their children for a few years, maybe it would be fine. "You're still so young, go home and stay with him for a few years, right?" If he's better, you can still go to work," my mom said before.
My husband did not persuade me to resign, on the contrary, he thought that the person who should resign was himself, and the most realistic reason was that he earned less than me. He did mention his resignation to the company two or three times, but because of the secret nature of his work, it was very difficult to resign, and his leaders even allowed him to take the children to work and did not let him go.
Sticking to work, probably to escape. During the eight or nine hours at work, I didn't think about the family at all. I can't face the circle all day, and after watching it for a long time, my heart will be uncomfortable, and I will feel that he is really pitiful.
I'm also not a very patient person, it really makes me round all day, maybe I will end up crazy. Moreover, now I need to earn money, keep saving money, and prepare Yuanyuan for going to special education schools and finding better pension institutions in the future.
Once I met a mother, my god, with a gaunt and sloppy face, I couldn't believe that she was actually much younger than me. I have seen her WeChat avatar, which is an art photo taken before, and now it is almost like two people.
She said to me, "You know what? Before my son was diagnosed with the disease, the cosmetics I used were the most high-end. ”
Now it's not that she doesn't have the money to buy those cosmetics, but she's not in the mood to dress herself up. Immediately after her child's diagnosis, she resigned as a very good tech executive.
I understood her very well, but I told myself in my heart that I must not become like her.
So, to this day I have reserved some of my life as a woman. Put on makeup every day to go to work, do yoga regularly, do masks, nail art, and make yourself more like a working woman.
I also go shopping and occasionally have afternoon tea with my girlfriends. I definitely felt bad in my heart, but at least I looked positive on the outside. My mother now says that I am relieved to see that you are doing well.
Yuanyuan's disease also forced me to start health in disguise. I used to be a particularly non-athletic person who could lie at home all day. Now I run every week, go to the gym to pick up iron, eat a lot lighter, and never touch a hot pot barbecue or anything like that again.
The only thing parents in this circle can do for their children may be to live a little longer. To put it cruelly, the white-haired person sending the black-haired person is the best ending for parents like us, which means that we have accompanied our children throughout their lives.
I often give advice to others.
When I was pregnant, my husband and I were not in the best physical condition, so when I heard young people say that we should have children later, I felt incomprehensible. Having a baby before the age of 30 must make sense. It is best to do genetic testing first, once the child is born, it is difficult to have a way back.
When you find out that your child is autistic, don't think about quitting immediately, there is no parent around me who does not regret quitting his job. In my own experience, resignation is the last resort. There is almost no possibility of a cure for this disease, and it will not play a reversal role because you quit your job and go home with your baby.
On the contrary, the effect of parents with babies may be far less than that of teachers in professional rehabilitation institutions, rather than this, it is better to earn more money, desperately earn money, send children to professional institutions, and ask professional teachers to give him behavioral intervention.
Parents must consume rationally, because the pit in this circle is too deep, and many people are asking for money in the name of treatment, waiting for parents to send money. I have also taken a lot of detours and thrown a lot of money. When people can't solve problems, they will inevitably be superstitious, it must be like this. Accept reality early and spend every penny on the cutting edge.
Also, if the child is diagnosed, get him a disability certificate, and then you can find the government to apply for a school or professional institution. I have some parents around me, who still harbor a hint of healing fantasies, to put it bluntly, sooner or later they have to face reality. This disease is irreversible, similar in nature to the lack of arms and legs, blindness, deafness and muteness, and much more serious.
Finally, I would like to appeal to the government and society. The disease is not currently covered by medical insurance, and can only be sought at your own expense. This group deserves more attention and attention, whether it is to establish special relief agencies or arrange appropriate jobs, which can only be achieved with the help of government departments.
*The content of this article is a popularization of health knowledge and cannot be used as a specific diagnosis and treatment recommendation, nor is it a substitute for face-to-face consultation by a practicing physician, for reference only.
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