We interviewed a mother of a child with autism.
The following is her self-report.
My husband and I met through a blind date and we got married. I wanted a child so badly at the time, I was pregnant with my first child at 29. There were some twists and turns at first, and I was very weak for a while. When I went to the bathroom, I felt that something was flowing into the toilet. I didn’t know what it was, so I took it to the hospital and asked the doctor.
The doctor was taken aback and said it was a child or something, and there was something wrong with the fertilized egg, and suggested that I get a genetic test.
I didn’t take it seriously at the time, and I regret it now.
Image source: Zhanku Hailuo
After the miscarriage, I was probably trying to conceive for more than a year. This time, my pregnancy went very smoothly. I got pregnant at 30, which is not too old. At 31, I gave birth to Yuanyuan, and it was a natural birth.
I am strong and careful during my pregnancy. I have never eaten unhealthy food or taken any medication.
I have regular pregnancy tests, and if I do find anything out of the ordinary, I will definitely not 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.
I later learned that autism cannot be detected during pregnancy, and it is currently a problem all over the world. If I have to say some signs, my husband once suffered from very severe depression, and his health has not been very good for a long time, and he has a history of stomach problems.
Image source: Zhanku Hailuo
I have observed parents and mothers in this circle, and it is rare to see that both are very, very healthy, and at least one of them has been emotionally ill. I have communicated with some parents and mothers, and I can vaguely feel that this person has some mania or other mental illness, but it is not serious, at least he can live a normal life. But I dare not say that there is a necessary connection between the two.
Later, son Yuanyuan was born.
For some reason, the child was born with poor bones, very picky eaters, and did not like to eat. He is over a year old and still can’t speak, his eyes don’t know how to see people, and he doesn’t have any focus. I called his name and he rarely responded. Take him out to play, and when he sees other children, he will not take the initiative to come over, and he will be extremely unfamiliar.
Image source: Zhanku Hailuo
My husband and I are very busy with work. Yuanyuan is mainly brought by my parents. Because it is a boy, I thought to myself, maybe it is a late development, it is just “stupid”, not much event.
It was a very accidental discovery that Yuanyuan had autism.
We originally took him to the hospital for a checkup that day, and it was gastroenterology. Coincidentally, the doctor had a background in neurology and psychology, and when he saw Yuanyuan, he said at the first sight: “You don’t want to be admitted to my department, go to a pediatrics department.”
Doctors speculate that Yuanyuan is autistic, and gastrointestinal problems are also related to the disease. We went to the neurology department that day, and the diagnosis was “your child is suspected of autism”.
I didn’t crash right away in that instant. Although I have heard of this disease, I have no specific concept, and I am blindly optimistic. Since it is a disease, I will look at it.
After I used my personal connections for a round of consultation, my psychological defenses gradually disintegrated.
It wasn’t the doctors’ diagnoses that broke me, but I added a lot of WeChat messages from parents of children with autism. Their children were considered older, 4-7 years old, and their parents basically is a state of despair.
Parents will tell me what these kids are like at age 2, where they are at age 3, and where they are at age 4. As if I saw Yuanyuan’s future, I collapsed all of a sudden.
Autism is a terminal illness among terminal illnesses. For a child, it is basically a death sentence.
At first, I was thinking about getting the disease cured. As long as I can take care of the disease, I can sell the house, no matter how much money I spend, without blinking. I’m sorry, I can’t accept the reality.
Yuanyuan has received drug treatment for about a year and a half. The drugs used are basically imported and have certain effects. For example, his eye contact has improved a lot, and he can start to emit some Simple pronunciation.
Image source : Station Cool Hero
He is also very hardworking. We have tried almost all the rumored, true and false drugs on the market. However, I believe in science very much. I also follow the doctor when taking medicine. I don’t try some remedies on my own.
Some parents take their children for acupuncture, massage, TCM conditioning, etc. TCM is said to improve the stomach. These therapies may be useful for children with mild autism, but I don’t expect them to be as severe as Yuanyuan.
We gave him probiotic treatment, and we also tried the “intestinal flora (fecal bacteria) transplantation therapy” which is hot in the industry, which is to transplant the fecal flora in healthy people. to the gut of a child with autism. We have done a course of treatment and have seen results, but this treatment has just started in China and it is expensive, and we have not insisted on it later.
During the time I was looking for a doctor, I also went to an American expert, so I learned a piece of information. Now there is a kind of genetic engineering. To put it bluntly, it is like cloning a brain. A child’s neuron or something is implanted in the brain of a child with autism. Someone is doing this research, but it’s unclear if it’s going to be successful. Moreover, if you want to try it, you may not be able to afford it without a billion at home.
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. She let Yuanyuan play with the toys, and then listened to me explain the child’s situation. Occasionally, Teacher Jia turned his attention to Yuanyuan and called out his name a few times, but rarely got a response.
Yuanyuan rarely responds to Mr. Jia’s shouting, and likes to run around the table, as if he has his own little world. From time to time he uttered meaningless syllables and occasionally glanced up at me.
The suggestion given by Mr. Jia is: rehabilitation training and regular follow-up. There is no cure for autism. Treatment and intervention are all about delaying symptoms. If left alone, the child’s condition will only get worse day by day, maybe by the age of 20, the condition is not as good as 1 year old.
Starting behavioral interventions early is good for both the child and the parent.
After Yuanyuan was diagnosed, my parents still blame me.
Image source: Zhanku Hailuo
My mom took care of me throughout my pregnancy and at first she suspected my pregnancy was the problem. She would recall what food she gave me at that time, and once she said, you ate hawthorn when you were pregnant, maybe that was the problem. She also criticized me for not quitting my job and taking care of Yuanyuan, “Which mother is as carefree as you, and still goes to work? You can’t stop staring at him every day at home!” she said.
My mother could not understand, or would rather not accept that this disease was incurable. In fact, she has the deepest relationship with my son. From the birth of the child until the child was 4 years old, she never left for 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, whenever they go to my house and see Yuanyuan, immediately cry. They all felt that I was very wronged and that I may have to bear the burden for the rest of my life.
My husband doesn’t put any pressure on me. In terms of symptoms, my husband may be more responsible, after all, he has a history of depression and mania. My parents-in-law never blamed me, and my husband would defend me. He even proposed to divorce me and let me have a healthy child with someone else.
Image source: Zhanku Hailuo
My mother once secretly persuaded me, “You just divorce him, he agrees, right, you can find another one”. I refused, I couldn’t do it.
When Yuanyuan was 3 years old, we stopped drug intervention and started looking for an agency for behavioral intervention.
That would have no choice but to catch up with the epidemic. We were forced to suspend classes as soon as we had a class at the institution. I heard from other parents that Peking University Medical Brain Health has a remote home intervention class. In order not to stop the child’s recovery, I signed up.
I also followed the online class for a period of time, and learned a lot of effective methods from the teacher. At least I can guarantee that the method of training at home is correct, and the intervention at home will not be a disservice. For example, you should strengthen everything in time, and you should also observe his response to your strengthening.
Image source: Zhanku Hailuo
His progress was slow, and even compared to other kids in the facility, he was far behind. It took me three months just to teach him what it means to “make a request”.
Occasionally when I get discouraged, I think,The results are completely disproportionate. The accumulated amount of money I spent on him was able to buy a house in second- and third-tier cities, probably more than one million. Insist 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 very social person. When I was studying, I was both the monitor and the student council president, and I often organized many activities. Later, I really didn’t have the energy to socialize, and they knew it well. They usually contacted me and never mentioned topics related to children. The year before last was the tenth anniversary of graduation. Our classmates held a party, and no one notified me at all. You think I am the monitor, but you don’t know.
People dare not call me because they don’t know what to say to me. The party is happy, should they laugh or cry when they see me.
Image source: Zhanku Hailuo
Now it takes almost all the time just to go to work and be around. The bigger problem was that I was very tired after get off work, and the thought of going home to accompany him gave me a headache.
I’ve blamed my husband before, and he’s obviously more responsible. We also quarreled. In the past few years that I took Yuanyuan to see a doctor, he suffered from severe depression again, and I was depressed for a while, and even had suicidal thoughts. I have seen many families with autism. Parents gradually become discouraged and become “autistic”. They just want to stay at home, and don’t even want to turn on the lights when they get home.
This disease is a test of humanity and morals. There are too many families in this circle that have irreconcilable conflicts due to the illness of their children, and finally fall apart. There are many people who abandon their children, so they are especially tested. In the face of this disease, at least the relationship between our husband and wife did not break down, but became stronger.
Image source: Zhanku Hailuo
If I don’t take Yuanyuan out and keep him at home, I don’t look like anything. However, I don’t want him to be completely out of touch with society, he also has the right to contact the outside world. I insist on taking him out to play every weekend and often go to the zoo, because he likes animals very much, maybe the animals don’t discriminate against him. He feeds the animals, reaches out and touches them, and gets a response from them too.
Outside, sometimes he would scream without warning, especially harsh, passers-by would look at him, I had to tell others that he developed slowly and had a low IQ, please understand . Most people are more friendly, but they are children, because they don’t understand, and when they see that he doesn’t respond or can’t speak, they will directly ask, what’s wrong with him?
Screaming is a way of expressing Yuanyuan. He will scream when he is angry, and he will scream when he is happy. Sometimes he wants to do something, but he can’t express it, and he still screams. When he screams, it doesn’t matter if you whip him or hit him because he can’t control himself. If I just face my son, after getting used to it, there won’t be much emotional fluctuations. However, I would inevitably see healthy children from other people’s homes, and I couldn’t take it any longer, and tears fell directly.
If you bump into someone else’s child, you won’t be envious, and downright despair will come to your mind. I often wonder, how will my son and I face this society in the future?
He is still young, so he doesn’t seem to have any problems from his appearance, but when he grows up, for example, after the age of 6, he can see it at a glance. This kind of child’s eyes are Very sluggish. I can’t imagine going out with a kid like that.
When I brought Yuanyuan to various doctors and experts for consultation, they all suggested that it would be better for one of them to quit and go home and take care of the children wholeheartedly. I know many parents in this circle, once the child is diagnosed, usually the mother resigns immediately, and the father works hard outside to earn money.
Image source: Zhanku Hailuo
At first our family discussed this issue. My parents wanted me to quit my job. They didn’t realize the severity of the disease and thought it might be fine to just stay home with the kids for a few years. “You’re still so young, go home and stay with him for a few years, right? If he’s okay, you can still go to work”, my mother used to say.
My husband never persuaded me to resign. On the contrary, he believed that the person who should resign was himself. The most realistic reason is that he earns less than me. He did submit his resignation to the company two or three times, but due to the confidential nature of his work, it was very difficult to resign. His leaders even allowed him to bring his children to work, but did not let him go.
Stick to work, probably to escape. During the eight or nine hours at work, I didn’t think about anything at home at all. I couldn’t face Yuanyuan all day. After watching it for a long time, I felt uncomfortable, and I felt that he was really pitiful.
Image source: Zhanku Hailuo
I’m not very patient eitherThe person with the heart, really makes me carry Yuanyuan around the clock, maybe I will go crazy in the end. Besides, now I really need to earn money and keep saving money to prepare Yuanyuan for going to special education school and finding a better nursing home in the future.
I met a mom once, and my God, she was so haggard and sloppy that I couldn’t believe she was actually much younger than me. I’ve seen her WeChat profile picture, it’s an artistic photo taken in the past, and it’s completely different from now.
She said to me, “You know what? Before my son was diagnosed with this disease, I used the highest-end makeup.”
It’s not that she doesn’t have the money to buy those cosmetics now, but she doesn’t have the mood to dress herself up. Immediately after her child was diagnosed, she quit her job as an executive at a very good tech company.
Image source: Zhanku Hailuo
I understand her very well, but I told myself at the time that I must not become like her.
So, to this day I have reserved some of my life as a woman for myself. Put on makeup every day to go to work, do yoga regularly, do face masks, manicures, and make yourself more like a working woman.
I also go shopping, and occasionally have afternoon tea with my girlfriends. I must be feeling bad on the inside, but at least it looks positive on the outside. My mother says now, seeing that you are doing well, I am relieved.
Yuanyuan’s disease in disguise forced me to start a health regimen. I used to be a particularly inactive person and could lie at home all day. Now I run every week, go to the gym and lift irons, my diet has become much lighter, and I have never touched hot pot barbecue again.
The only thing parents in this circle can do for their children may be to live longer. To put it cruelly, sending a black-haired person from a white-haired person is the best outcome for parents like us, which means that we will accompany our children throughout their lives.
I often give advice to others.
When I was pregnant with Yuanyuan, my husband and I were not in the best physical condition, so when I heard young people say they would have children later, I couldn’t understand. Having a baby before the age of 30 must make sense. It’s best to do genetic testing first, and once the baby is born, it’s hard to go back.
When you find out that your child is autistic, don’t think about resigning immediately. I don’t have a mom and dad who doesn’t regret their resignation. In my own experience, resignation is the last option. There is almost no possibility of cure for this disease, and it will not be reversed just because you quit your job and bring your baby home.
On the contrary, the effect of parents bringing their children may be far inferior to that of teachers in professional rehabilitation institutions. The teacher gave him behavioral intervention.
Parents must consume rationally, because the pits in this circle are too deep, and there are many people who make high bids in the name of medical treatment, waiting for parents to send money. I also went through a lot of detours and spent a lot of money. When people can’t solve problems, they inevitably become superstitious, and that must be the case. Embrace reality early and put every penny on the edge.
Also, if the child is diagnosed, get him a disability certificate. Later, he can apply to the government for schools or professional institutions. There are some parents around me who still have a little bit of healing fantasies. To put it bluntly, sooner or later, we must face the reality. This disease is irreversible, similar in nature to missing arms and legs, blindness and deafness, and is much more serious.
Finally, I would like to appeal to the government and society. This disease is not currently included in the scope of medical insurance, and can only seek medical treatment at their own expense. This group should receive more attention and attention, whether it is necessary to establish a special aid agency or arrange appropriate jobs, all of which can only be achieved with the help of government departments.
*The content of this article is for the popularization of health knowledge and cannot be used as a specific diagnosis and treatment suggestion, nor can it replace the face-to-face consultation of a licensed physician, and is for reference only.
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