Rice and Millet Explore the Integration and Happiness of China's Autistic People, the third part of the series - Tian Huiping.
Tian Huiping's name does not seem to need to be said more in the autism jianghu. A high-level intellectual who studied in Germany in the 1990s, the prototype of "Ocean Paradise", the founder of Xingyu, China's first autism service agency, and Yang Tao's mother.
For 30 years, she has generously brought Yang Tao to appear in various public places, to give speeches, to travel, and to announce to the society with actions that "it is good to have an autistic person living around!" ”
Some people understand, some people do not understand, but Tian Huiping never cares, for her, the most important thing is to cherish the preciousness of life, advocate the dignity of life - this is the right that every person with mental disabilities should enjoy.
01
If I don't live next year
That's my last words
Rice and Millet: Have you had any new observations or special experiences in your life lately?
Tian Huiping: I think this was the last good time of my life, and it was particularly beautiful. A good girlfriend of the same age sighed, we are all ben 70 people, how are we old? If I had to say it, I think it would be nice to be old. One is that I don't have to get up early, I went to college until I retired, I can't forgive myself for getting up late, now I want to sleep until whenever I want, I often get up at 12 o'clock, send good morning and breakfast photos to my friends at 2 pm, this is old. I'm not old enough to move, so this is a time that I haven't had in my life, and I feel like heaven. Because I've worked so hard, now allow myself to be lazy, allow myself to slow down, and not have that anxiety.
Last summer, there was a middle-aged lady, in my opinion very young, to our house to do something, heard that there is a garden, I want to see, especially funny, in fact, the garden is 10 square meters, she walked around, just said a word: "This is the life I want", repeated three or four times.
Decades ago, I thought it was over, how to be so unlucky, to get such a child, this life is over. Looking back on this now, I think it's all ridiculous. But, eventually, decades later, I lived a life in the eyes of others, right? But at my age, the first generation of parents in China who got an autism diagnosis certificate, they feel that life is everyone's life, and how you treat life, life will treat you. Yang Tao is an important factor in the beauty and richness of my life, not all, not the only one, but one thing is very important, he is not interfering. It is precisely because of the existence of such a life form as Yang Tao that I have not wasted any time in my life, I have not wasted it when I was young, and I have not wasted it now. Looking back, I think it was actually Yang Tao who made me and made me live differently from anyone, precisely because he was different, so I also lived differently. Without Yang Tao, I would not have been able to have such a satisfaction with my life today, and I don't want to live a mediocre life. Therefore, I want to bless all autistic families, when you reach my age, you can feel that this life is worth it like me. To do this is to seriously raise your child, not to raise him not to be autistic, but to let him grow into a healthy, clean-acting, emotionally calm, adaptable, healthy autistic person in the protection of the right values. My son is a healthy, wonderful, Kainer autistic person, I am a healthy, walking on the right path, so happy autistic parents, next year if I am not alive, this is my last words, I hope that the younger generations, can live as peacefully and happily as my son and I am today.
Note: Kena's autism is typical of autism, and Kena was the first doctor to name autism in 1943.
Rice and millet: At home, how did you spend your day with Yang Tao?
Tian Huiping: He enjoys breakfast, I just enjoy making breakfast and enjoying breakfast with him. Then I did the housework, and he was my assistant, because I couldn't bend down to take things, I couldn't hold weights, so he was called by me. Like it's about to be spring now, if there is no Tao, I can't go into the spring, why? Because my sense of ceremony is very strong, spring is coming, all the flower pots in our house are uncovered, the soil is loose, the pots are changed, but I can't move, these are all done by Tao Tao. Every day, I was always busy, he was helping, including my cooking, and the water in my pot had to be brought to me from the sink to the stove, from the stove, because I had obstacles, my lumbar spine was particularly bad, and the pot was my waist, my muscles, my arms.
The balcony of Tian Huiping's home
Now I feel as if my need for him has exceeded his need for me. When he was idle, he just sat on the couch and listened to music, and he thought of what he wanted to be happy, and after a while he couldn't sit still, and he would run to the kitchen to look at it, which meant that you should cook. Someone asked him what he liked, and he said he liked to eat, and he liked to watch his mother cook food, and that's it. After breakfast, I was too busy to sit down for an average of three hours. In this process, Tao Tao is an important assistant to me. I couldn't do the things I couldn't do without him—clothes in the washing machine and out of the washing machine; bowls for finishing meals in the dishwasher, out of the dishwasher. Our family's very beautiful secret garden, without him, I can't move anything, I can't move anything. For example, today I bought five pounds of red beans outside the door, the courier received me out to see 5 pounds, I have to wait for Tao Tao to get up, and then carry it in, it's as simple as that. Every day after breakfast, when everything is packed, I start to design lunch, design the second meal, how to put it on, how to be beautiful, how to use what container to put up and how to look good. As soon as I am happy, I quickly invite friends, I have my own contacts, and I will not reduce my own life hobbies because of him. The two of us were just that and very calm. At night, our house has candlelight, there are lights, and then I look for some TV movies to see, he doesn't care, you put anything he does, but he has a great enjoyment, that is, to ask me to bring him snacks to eat, just this gesture of handing him, he enjoys the process of you handing him to eat. It was a time he enjoyed, but snacking brought me too much confusion because I gave him something to eat, I had to eat it, which was not good for me to control my weight. The premise of a peaceful life is that most of the life of Han Tao is self-care, and the support and assistance I give are all a certain link, such as after he brushes his teeth, the toothbrush I have to help him rinse, otherwise it will be hard the next day, because the toothpaste on his last toothbrush will not be clean.
02
The 37-year-old Yang Tao walked into middle age
His changes and preparations
Rice and millet: Yang Tao is also slowly entering middle age, what changes do you feel in him?
Tian Huiping: It's about losing weight, when he was young, he didn't get fat at all. You see his belly is round and rolling now. He loves to eat everything and eats everything, so I have challenges, and in terms of dietary health, I am not an objective professional. As a mother, there is a point that you have a hard time controlling, you always like to be afraid of your child being hungry.
For example, last night, I made soba noodles that he particularly liked to eat, Andi was happy from the afternoon, he knew what to eat when he saw me making side dishes, and there were three bowls in the evening. The third bowl he must be too much, which is a challenge for me, that is, I must be rational.
Rice and Millet: How did he learn to do housework?
Tian Huiping: First of all, throw away the garbage, I cut and peeled the garlic skin here, as long as I handed it to him, I sorted it for me, and put it very well, I didn't have to turn around by myself, and I didn't have to be nervous about my waist. I cut everything for him, picked beans, brought water, served pots, and he could do all this. It's all cumulative, what problems his life faces, when the subjects come to shape and build his behavior, are actually with me and him to cross one hurdle after another.
Rice and Millet: You will feel how happy Yang Tao is when he helps you.
Tian Huiping: Of course, he knows that cooking has good food, and all the goals of his world are to get food. So if I were to punish him, that is, deprive him of the opportunity to eat, he would know what not to do next time.
Rice and Millet: So, his self-care ability is still improving.
Tian Huiping: Don't ask me how he was when he was 30 and 40 years old, but how he did when he was 3 years old and 4 years old. What did you do at 13 and 14? What did the people around him do with him? Not everyone will become a helper in my life like Yang Tao is today, a person who is elegant, self-disciplined, super self-controlling, patient, extremely clean behavior, and no problem behavior. To become such an autistic middle-aged man, his entire growth process must be 0 mistakes, that is, the people around him can not make mistakes when interacting with him, because all your mistakes are depriving the child of the opportunity to progress.
Tian Huiping and Yang Tao traveled abroad
03
Yang Tao's future
People, things, money must be done well
Rice and Millet: What preparations will Yang Tao make for his future care arrangements, in addition to the trust?
Tian Huiping: What he can't do himself, you need to rely on a system. Including the life during the day, the life of the night accommodation, where he went, what he did, who organized the arrangements for him.
For example, Yang Tao's personal hygiene does not need someone to wash his face, brush his teeth, take a bath, and change his clothes, but he cannot complete all the links without relying on others, such as just said that toothpaste is not clean. Everyone's needs are different, so we must tailor the care system for him, and this system does not depend on the individual, no one can bear it for a lifetime, and it does not depend on whether this person is kind, kind, and loving, it depends on the operation of a system. Then it is a team of guardians who arrange the whole thing, and there is a cost, which is money. For Yang Tao, where to go during the day, for example, Xingyu has an adult project, you can come here during the day, you don't depend on me, money is the trust just mentioned. Definitely keep a sum of money, but who is in charge of this money? If Yang Tao's caregiver also has the control of his money, there is an insecurity factor here. I used to hear a story that my brother was autistic, my sister was a guardian, my parents died and left money for my brother, and the original arrangement was to send it to a place for 4,000 yuan per month, but my sister was constantly harsh and only willing to pay a few hundred yuan. In fact, this way is also cruel to my sister, do I have a brother who must take care of it? It's not even fair to not even have the right to say no. So guardianship, guardianship and financial power must be separate. I am very happy to have a trust, which means that Tao Tao has a financial company of his own, and as for what money can be reimbursed in the future, my will is very detailed.
Rice and millet: Actually, a whole system is prepared for him.
Tian Huiping: What is built is a micro-system. I was in the construction 10 years ago, and I never thought of entrusting Yang Tao to any one person, but a team, of course, all of whom were familiar with Yang Tao. I thought so at the beginning, but the original civil law has no provisions, it is still difficult to achieve, now the Civil Code can have a testamentary guardian, I can go to the guardian team, the name of the team is called Yang Tao Life Assistance Group. Since Yang Tao was diagnosed, I have been thinking that I can't die, I must arrange, the first edition of my will was drafted 10 years ago. There is such a child, you can't be sloppy about anything in life, and there is a probability that there will be accidents in life, so you can't say that I'm still young, I can still do it. Now that I've made arrangements, I even feel that I don't want to live too long, because my plan is so perfect that I can't implement it if I keep living.
Tian Huiping signed the trust site
04
Bring autism together
This practice should be avoided
Rice and millet: Now there will also be a view that it is difficult for autistic people to fully integrate into society, it is better to find a place to live together, everyone understands each other, and the acceptance is also very high.
Tian Huiping: If we look at the scope of the world, no country does this because it is a "dead end".
Is there any ordinary person in that place besides autistic people – do ordinary people have the right to live a life without autistic people? Is this a violation of the rights of ordinary people?
Because my children are like this, I have to be isolated from the world, which is a dead end.
You must know what civilization is happening in this world and what it is doing. Integration into society does not mean that the so-called like you and me can be called integration, blind people, deaf and dumb people, have their own way to survive in this society, is it because he can't see, can't hear, he has to be locked up somewhere?
So all the segregation of people with special needs is a concept that the whole world avoids, and this kind of project never comes to me, they know that I will scold them.
What is life that it cannot be a part of our community? I took my son on a trip abroad, I said my son was autistic, and people responded to me that "there was an Asperger in the high school class", "there was a classmate in kindergarten who was autistic", "the neighbor was an autistic person"...
So why are we going to isolate them separately, what are you afraid of? As parents, we only have one right, to appeal to society, to make them as dignified as we are, rather than to take them out of society and then your own life? Doesn't our life have the right to be colorful, and doesn't have the right to have a personality? My final strength lies in yang Tao becoming the supporter of my personality, and I did not destroy myself because of him.
I've been wondering when, when everyone thinks back to middle school, when there was a Down classmate in the class and a Asperger at the same table, society was really improving.
In 2020, Tian Huiping and Yang Tao were on the pacific coast