VOL 2904
Some time ago, we published an article - Doctor's Mom: Five years after my son was diagnosed with severe autism, someone advised me to have a second child.
The doctoral mother in the article works in a university and is the deputy director of a certain department. Her son is 6 years old and suffers from severe, typical, and low IQ autism. After four years of intervention in institutions and home, my son, who had no ability to take care of himself, learned to eat, wear clothes, and go to the bathroom to urinate and defecate. The family has found a suitable rhythm and is still intervening step by step.
After coming into contact with many families with severe autism, my mother has the following experiences for novice parents.
. Enter the institution and keep warm together
My son was born in April 2017. When he was 15 months old, I found something was wrong. At that time, he had an eating disorder and it was particularly difficult to eat. I searched online and found that it was probably autism.
I almost cried in the office, and I couldn't stay alone. I called my husband, brother, and good friend, and my good friend took me home from the next unit.
After I got home, I stared at my son, hoping to find evidence from him that he was not autism. In the following two months, I felt relieved sometimes and felt anxious.
18 months, I found that I couldn’t deceive myself, so I found someone to hang up the account of Director Ke Xiaoyan, Nanjing Brain Hospital. I heard that Dr. Ke is very careful in his treatment and will take time to observe the child. But in just five minutes when I saw my son, she gave the conclusion on autism. Later, I went to Nanjing Maternal and Child Health Hospital and got the same conclusion.
I was mentally prepared and cried in the doctor's office. The doctor may have seen it a lot, and waited silently for me to finish crying and said, "Let me find an institution to intervene."
That sentence is like a ray of holy light in the dark hell, saving me from the abyss of despair. Yes, there is still a way to intervene.
In the next month, I bought a lot of books on autism, took parent classes, followed official accounts, went to institutions, joined many autistic parents groups, and saw many cases that touched me.
Someone in the parent group also showed up that his son didn't know anything before he was 3 years old and his abilities were particularly poor. He is now 7 years old and is in elementary school. A certain person with autism is 5 years old and can't speak, but now he is in college. Cases like
made me feel great comfort. My son found that as long as we work hard enough, we will definitely be able to intervene well.
Next is a long way to intervene. I found an old intervention institution in Nanjing, and it has been 4 years since today.
What I want to say is that when a sudden big stone hits me, no one can accept it in a short time.
At this time, we need care the most, but no matter how much comfort a relative or friend is, it is not as good as a quote from the genealogy parents: I understand, I was the same at that time.
This is why I recommend that families with autism go to institutions for intervention for at least half a year. During this period, not only the children are intervening, but adults are also venting negative emotions in their hearts.
Many parents find it difficult to accept that their children are out of place in normal social environments, but most of the children in institutions do this, which can also alleviate a lot of anxiety among parents.
Although we will eventually face the cruel reality, the organization is a good buffer and can also make good friends to help each other.
helps each other really matters. When facing autistic children, it is really hard to support .
2. Don’t take your child to travel long distances
If you feel that your child’s development is behind your children of the same age, hurry up and see a doctor. If the county town doesn’t work, go to the prefecture-level city, at most provincial capital hospitals. There is no need to go to a large hospital to find well-known experts.
Many parents travel around and actually want an expected answer: the child is not autistic.
In fact, most of the diagnoses before the age of 3 were suspected, and my son was highly suspected at the time. But whether it is autism or developmental delay, once the child develops far behind his peers, he must intervene.
Long-distance travel and traveling around the country not only cost too much money, but also wastes valuable intervention time .
3. Don’t seek medical treatment in a hurry
When you learn that your child is autistic, many parents will seek medical treatment in a hurry and look for various treatment plans online.
Such as electroencephalopathy, traditional Chinese medicine (acupuncture) treatment, dietary treatment, fecal bacteria transplantation... These therapies have not been scientifically recognized, and in addition to spending money, they also make children suffer.
The best way is to consult the local Disabled Persons’ Federation. They will give you some suggestions and recommend corresponding institutions in their jurisdiction. If you feel that the resources in your hometown are too scarce, you can consider institutions in big cities.
Don’t be too anxious after entering the institution. Generally, the first month is the adaptation period for the child. After a period of time, you should know whether the child learns quickly or not and how capable he is.
institutions will also formulate corresponding teaching plans based on the children's evaluation results, and then we will intervene step by step.
4. Intervention, there is no best, only the most suitable
In the institution, parents also have a rough understanding of the intervention methods and children's situation, so they need to consider how to intervene next. In fact, they are also re-planning the future of the family.
Although children need intensive intervention, it is difficult for ordinary families to do it. Especially for children with weak abilities, parents will be more difficult to teach.
We should not blame ourselves for this.
My son has been in the institution for almost four years, but he still has no language and only imitation of two or three words. Cognition is still at the stage of recognizing objects, such as color, size, and orientation, and are completely incomprehensible.
So, we focused our intervention on self-care. At present, he will eat by himself, wear clothes, socks, shoes, and go to the bathroom to urinate and defecate. It is not too much for us to take him.
Now, my son arrives at the institution at 8 am every morning. In the morning, there are group classes, sensory classes, and individual training classes. He eats and sleeps in the institution at noon, and gets up and plays games in the afternoon. I added another lesson to train attention, sensory, fine fingers and social interaction.
My husband took my son to one class in the morning before going to work, and I took over the second class and went home. On the weekend, I took him out for activities such as cycling, painting colors, cutting paper, slapping balls, jumping circles, and other activities. The day passed quickly.
This has become our fixed process every day, and we have gradually gotten used to this rhythm, and no one feels very tired.
Whether the child goes to an institution or is at home, consider comprehensively based on the family situation. A balanced way to not feel uncomfortable with each other is the best way to intervene .
5. Don’t force your children to force merging
Some parents are particularly persistent in thinking that as long as the children are with NT, autism will be cured. But it's like putting a child without hands next to a child with healthy hands and feet, and they won't grow hands because of this.
The same is true for children with autism. Putting severe autism in healthy children may aggravate the child's pain and lead to various conditions.
The world of children is not necessarily fairy tales, but more likely it is a Shura field. Adults will pretend to be kind to you due to their moral cultivation. Children will not, but they will bully children with poor abilities.
Some children with low intelligence can’t learn anything in normal kindergartens, but they can feel the hostility of their children – even the lowest ability can tell who is good to him and who is bad to him.
In the four years I have been in the institution, I have seen many older children with moderate and severe autism. In order to send their children to general schools, parents do not hesitate to let their children study for one year in the evening, but many of them transferred to special schools without persisting until the third grade. Becoming classmates again with the students who were originally in the institution, parents feel that all their efforts over the years have been in vain.
Some parents live a frightened life every day, afraid of receiving calls from teachers.
In fact, parents don’t know the child’s abilities? However, the unwillingness to let them try it out - what if the child can keep up.
Accept reality, adjust lifestyle, and face it bravely is the only we can do.
6. What can deceive parents the most is themselves
Many autistic parents do not want to hear the correct knowledge, not because there is no way to get the correct guidance, but because they do not want to hear the correct information. Because autism is so cruel that many people would rather deceive themselves.
My son’s classmate is also autistic. My mother spent more than 200,000 yuan to spend all her money on her child’s financial resources, but the child did not improve at all.
There are also parents who insist that love can heal everything. As long as you give your child enough love, the child will heal sooner or later. They quit their good job for the child and concentrate on taking care of him.
Everything is based on the child’s feelings first, and the child will not do what he does not want to do. Children will accompany them all the way to do whatever they do, and they will have no life of their own.
One day, a parent told me: "You see, I did not go to an institution to intervene, nor did I intervene at home, but accompanied my children and gave my children enough tolerance and love. My son has improved compared to last year."
I don't know what to say. Even if autistic children do not intervene, they are developing, although their brains are developing slowly. But the development direction of autistic children is completely different when they intervene or not.
Some parents also believe that exercise is more effective than any intervention. A parent mentioned that swimming can promote the development of children's brains, and said that children have made great changes after swimming.
I questioned that he was not rigorous. Exercise is indeed helpful to children's physical and mental health, but it is more effective than any intervention. What evidence is there?
I also think swimming has a promoting effect on children. As their daily life, it is very good to pass the time. But at most it is an auxiliary intervention, which is an exaggeration to say that it is more effective than any intervention.
Of course, if the correct intervention method is integrated into sports training, it is naturally good.
7. Facing reality
reality is our children, and they are likely to need to be taken care of for life. At the beginning, most parents couldn’t face reality, but sooner or later they had to face it.
Based on this reality, our goal of intervention is not to turn them into normal people, and of course we cannot change it.
Our goal is to let him learn to take care of himself as much as possible, so that the work of taking care of them is not so hard. Only by not working hard to take care of him can he ensure that his quality of life will not be too poor.
Therefore, it is important to train them to obey and cooperate.
There is a parent who loves his children very much and is very humane. He refuted me: "Why should my child be obedient? Can't he have his own ideas?"
If I have the financial strength of Jack Ma , maybe I think that obedience is not that important for children. If the child does not cooperate, at most, you can invite more professionals and let them cooperate with the child.
But as an ordinary person in today's society, many rules must be followed. If the child does not cooperate, it will be difficult to move forward. Before
, my son didn't like to go back, and later the teacher said he would train him to cooperate and accept even if he didn't like it.
0.00 I took him out one day, but when I walked halfway, I found something that I had to bring, and I forgot to take it. He wanted to go back but didn't cooperate. What should I do?
So, my child’s father and I took him to train over and over again, and at first he resisted very fiercely. We chose to go to the mountains to train after 8:30. At first we walked together, slowly I left behind. My father took the child for a while and then asked him to look for his mother.
Slowly they went further, so far away that they couldn't see me. The child learned to look back while crying. Slowly we walk together, to a certain point, and look back together.
Another rainy day, I didn’t sit in the chair as usual when I came back from a walk, but went home directly. My son cried at home for a long time, and we sat next to him to accompany him, neither caring about him nor comforting him. He stopped crying.
Later we found that when we came back from a walk, sometimes we sat for a while, sometimes we didn’t sit, so that we would not make this matter a routine. Gradually he didn't care.
Now, my son’s cooperation is pretty good, and there are almost no emotional problems.Even if he takes away his favorite thing, he will be angry for a while and will be fine soon.
*This article only expresses the author's views and does not represent the position of small and small rice.
text and pictures | Walk with the stars
edit | Pipi Dad, Meisha
