【Notes of the Interview】
Have Survived and become clear
April 2010, this world was getting new scars from catastrophes: mining disasters, earth quick, volcano… and the spring was hesitating to come than usual.
But the journalist started her April with a story of a mother, Tian Huiping. A story sunk and overwhelmed through 25 years in this busy world.
This world is never lack of new miseries, and therefore never lack of the shocks about them. However it maybe because they are easier noted at the moment they occur. In fact miseries are a part of life, only they occur with different features and processes how human lives go through them and the sides reached afterwards.
Autism is also a misery, especially in current China. When a family has a child with autism, misery is the title of their daily life both to the kid and to his family. How long the family could endure, and how far the mother’s journey could reach?
In the story of Tian Huiping and her son Taotao, the most impressive things catching me are the undoubted, explicit interpreting and displaying of “Difference” and “Individual” what makes this easily “sad and sympathetic” story with another quality__ “be stuck with awe”. In China we describe an extremely unhappy life with “life in piercingly cold”, but from Tian Huiping’s story we feel hardly wretchedness but the instinctive fighter with her destiny and fate, which challenges her endless patients and perseverance.
Now it is 2010, the world autism may not so strange to Chinese like in the years Tian Huiping started Stars & Rain. There are now several series in TV describing stories with an autistic child as decoration to appeal the audience.
Back to 1997, where only the movie “Rainman” and Dustin Hoffman catching the attention to autism in the world, but not in China yet, the 4 year old Stars & Rain were forced to move for the 4th time.
That year, Tian Huiping was 39, emaciated surprisingly. I am not capable to tell how shocked I was at the moment meeting this woman, a single mother, the leader of a small hardly maintainable school. Everything could be read from her looking.
13 years have passed away, how are Tian Huiping and Stars & Rain doing today? And her son Taotao? I still remember the last meeting with him with his school bag on back, came home alone after school… How big is he today?
March 30, I knocked the door of Tian Huiping’s home again. She can not remember how I was looked, but still remember clearly my last question to her 13 years ago: “What is your original dream of life?” However I was shocked again by the first glimpse of her__ a beautiful lady much younger than 13 year before!
She treated me with the soya bean milk made by herself, fried eggs with the first leeks grown from her balcony. In each corner of the house I can feel the successes of a fine and tasteful hardworking woman. Both of us can still remember her answer to that question: “housewife”.
“I really am enjoying my life.” She says, still single, and Taotao is still autistic.
“I have survived.” In 2010, Tian Huiping expressed her understanding of life within this sentence. “I am clear about what is the meaning of life.”
This is the new life period, I feel not only contented but also luckily: If I didn’t have Taotao, can I experience such a meaningful life?
Wu Fei: How come that I feel you are in much better condition than I met you in 1997?
Tian Huiping: I have survived.
Wu Fei: How and what happened to make it? Is there some one loves in you?
Tian Huiping: I am always loved. But I believe that every body is a pass-by except Taotao. He is my ever lover.
Many friends of mine have children graduate from high school or universities in these years. They can’t help feeling lost when the kids turning their attention more outwards the family. I always try to convince them: this is your success and his success. Not every mother can expect such a day when their kids say: “Oh, mom, what I am busy with is none of your business! I can deal with them.”
In another word if we change the view: I will never have such a lost feeling like them. I always say: My son is the only man in this world who loves me forever and whom I can love forever. (lol) It sounds teasingly, but it is my life. It is not rare that a woman believes her love in her son forever. In opposite however, she is never sure that she is the most loved woman of her son forever. We, as mothers of an autistic boy, are firmly sure about that. (lol) My friends always say: look at Taotao’s loving eye contact to her mother, and the loving smiles when watching his mother… his only presents it to his mother. I feel more than enough contented. What do you want to expect else, if you have some one who loves you without any requests and change in his whole life?
Wu Fei: This is in deed a unique way of thinking…
Tian Huiping: I can remember that I was dreamed of a live as housewife: staying home and taking care of children, husband and managing household. I hated to go out as a work lady to deal with the complicated world. I then complained about my wrong marriage. My dreamed life could not be realized due to the husband who could not earn enough, so that I could stay home.
But those thoughts troubling me were disappearing soon later. I was too busy and full scheduled with working in Stars & Rain. This is a life with so many things worth doing that you would forget about everything except feeling proud and meaningful. You can’t help believing that each day is ended valuable. Even when I was cleaning up a corner in classroom or tidying up a desk, I feel happy because I know I was working for a beautiful thing and to a meaningful goal.
Then, probably since 5 or 6 years, I enter another period in my life. It is not only that I don’t feel not sad and unlucky any more, more likely I feel that I am so lucky. I am only grateful for the life I have. God is spoiling me! I’m very happy with those feelings, I have survived from then. Life is no more a suffering struggle. It is a thing to enjoy.
Thanks for my Taotao, without him would I ever have a chance to live so contentedly? No, I don’t think so. I’m grateful for Taotao, for being a part of him.
There are more and more people working for children with autism today in China. However it should not mean more and more occupational “killers” around autism.
Tian Huiping: Indeed the older the children with autism grown up, the bigger is the challenge to the typical community structure --- supporting system with services and care. I have visited facilities for people with autism in many western countries. There I can see what do they have for people with disabilities based on community, and how they think and talk about promoting a better service for adult autistic person, so that they could have chance of a normalized life. Changing people and community is very important. Otherwise they would not have a chance to be accepted.
Wu Fei: But all these have not built in China yet.
Tian Huiping: Exactly. That’s why a family’s life is soon and almost destroyed when they know that their kids will be lifelong disabled. Parents have to struggle in the rest of their life. This is a forced struggle, not depending upon your wishes.
I feel grateful when I see Taotao. He is so quiet, patient and sweet. A friend of mine says, when every time he comes up to see me in Beijing, “You are a great mother, because I can see how contented Taotao is.” I say, “I am not the one who is great, it is my Taotao. What a patience he must have to endure the circumstances which is not prepared to have people like him as a part there. We all should thank him for his tolerance to us.”
My Taotao is an autistic boy with “clean” behavior, means he has hardly behavior problem. Occasionally he gets upset and excited, but everybody does the same, isn’t it? I’m grateful for him. Taking care of Taotao will be more and more challenging to me who is getting older and weaker. Thanks God, I have my Taotao in his lovely and caring way.
Wufei: Is this because of his nature? Some autistic person tend more aggressive?
Tian Huiping: It is indeed proved by scientific researches, how influential the effective intervention could be to an individual. What I have done is: using the approaches of ABA (Applied Behavior Analysis, developed in USA in 60s) to communicate with Taotao, solve problems. ABA has becoming the model of my thoughts, the way of my behavior, and the philosophy of my life: collect date when problem occurs, analyze when having date, change the things causing the problem…It helps me to understand Taotao, and helps him to understand me. Both of us are benefited from that.
Today in China, there are many facilities/schools working with autistic children, governmental or non-governmental schools and organizations. But most of them are working in a wrong belief: we can change them to be as normal as the way we are.
Wu Fei: They think this is “teaching them”.
Tian Huiping: This is wrong! More people working with autism shall not means that more occupational “killers” occurring. Killers who work to kill autism, to change them to be non-autistic, with traditional rejection behind it--- won’t stand people with autism being a part of us. This is wrong! The correct is, that more people working FOR autism, work between autism and society: promote more understanding and ability of the typical world, how to share the world with them, and also helping the autistic children/adults to adapt it. The value of our work at Stars & Rain is: we are here not to extinguish autism, instead of that we are here to share the same world with them.
I take now each chance holding lecture to the parents in all parts of China. I still give 4 lectures to the parents at Stars & Rain within one semester (4 semesters each year). One of the points I emphasize is: if we only attempt stubbornly changing our kids according to our criterion today, there would be many aggressive autistic persons around us in the future. It is really a result caused by the wrong efforts we did now.
If I am capable to correct the wrong tends in the area of working with autism in current China, it’s not my mind. I just am doing what I think is correct and what I can. Most of the autistic individuals challenging his circumstances with aggressive and violent behaviors are shaped during the process of their growth. Image please, how hard and terrible it is, if one can not make him understood, and only suffers in a world full of misunderstanding and confusion. Taotao is not the kind of case, because he has a professional communication assistant_ that’s me.
Taotao was invited to visit Germany with me, and he also has traveled everywhere in China without my accompany. He tries his best getting alone well with different public situation. Many say to me: “It’s Taotao who makes you accomplished, and you who makes Taotao accomplished. You both are working for each other.” Every time when I am told, how lucky Taoatao is to have me being his mother. I want to say: how lucky I am to be the mother of Taotao. We are shaping each other. We are a perfect combination of luck. I’m grateful for this arrangement of God.
It is a question of ability to full the life with value. It’s depending on yourself, who turns miseries to treasure or to trash.
Wu Fei: You talked about that there are more and more facilities for children with autism. Is that not started from you?
Tian Huiping: Yes, I think so. Before Stars & Rain, “autism” was only a term for 3-4 doctors used for diagnosis. Stars & Rain makes it to a public issue with multi-needs behind it, which question the chance of education, equal right of education, requirements of families, rights of parents for a normalized pretty life and so on…All these issues was first put forward by Stars & Rain. So I have more than enough reasons to be contented and proud, I guess.
My pride is not built on me, it is built on Taotao. On one of my trips to USA, a colleague there watched me for a while and then said to me: God has selected you to be the mother of an autistic kid in today’s China. I often remember this and agree. Yes, it is Taotao’s mission to be sent to this world in his way, and I am the person who carries the mission for Taotao to realize it. So I am really proud of Taotao. It seems that he has few business with this world, but it is not so. He motivates us to change the philosophy we had believed. I only am a worker for his mission. I have lived up to this task. I haven’t disappointed Taotao and God, if there were really one. I feel really accomplished, this is the feeling: I have survived.
Wu Fei: What do you think that Taotao’s coming to this world should advise us?
Tian Huiping: Respect and Equality. We are here for a better world. We should learn how to accept people with special needs. We need learn techniques to accomplish it. When parents come to Stars & Rain for their parenting training, we first talk about with them: don’t expect that you will leave here with a child who is no more autistic. You come with him and go home with him who is autistic. What must and can be changed during the training? That is the parent who change their mind from “the kid is to change” to “What we must learn to be good parent of our autistic kids”.
Because of our work, people with special needs should enjoy more from life. We are not working to kill them for a society which will not see them. We have been working a lot in this issue through our teacher training program for new organizations and schools. We must thank to the donors from all over the world who supported our teacher training work, for example, the German Misereor, American Ford Foundation, Rotary Beijing club, Canada Songqingling Children Foundation…
I often share with parents when they feel sad and hard with their autistic kids: do you ever think how hard the life is to our kids? I can not image what a patience and power Tatao needs to stand the world he must live in! I can’t tell how much I admire him.
One of my Japanese friends said: if there must be some people in the world autistic. Taotao is lucky, because you are his mother. I love what he says. I am selected to be his mother, because I am more capable to love him, respect him, accept him and protect him. Think about the current China where there has not been any social security system yet, all people with disabilities are living dependent on their family care. Don’t worry, Taotao, I am with you forever. I am the best one. Yet I will fight for you for a better community and understanding in China.
Wu Fei: I feel that you are very powerful in one point: make your misery life as positive as it could be.
Tian Huiping: Yes, my life changes me. I was also very despaired in the first years of the diagnosis. Another mother of an autistic boy said: We are not a human being if we are never sad because of our kids. But we are not good person, if we only sunk in the sadness without getting out of it. This has become my belief, my attitude and my philosophy. Every body has to face some miseries in his life, it could be a chance of treasure, it could be nonsense. It depends on our selves.
I used to be badly spoiled girl. If there were not a chaotic Culture Revolution, I would believe that the world was only for me to be loved. My family was suffering horribly and survived finally. My life seemed coming back to the spoiling world. I was the first university students after the Culture Revolution, and was sent abroad for study in the first years of opening time in China… a girl to be jealous of. However after my return from Europe I was told that my son eas autistic, life long disabled…God is very equal. If you have got much more benefits than others of your age, you will one day challenged either much more than the others. If one never has a life with challenge, it is because he is too stupid to convince God. (lol)
I very enjoy watching how Taotao makes differences to this world. He is so harmless, why not?
Wu Fei: I like a story of you. Once a mother was complaining about his autistic son: I can not understand why we deserved having an autistic kid. Both I and my husband come from families of well educated background. My brother and his two brothers are all graduated from world famous Universities like Columbia University, Oxford University… You interrupted her with anger: And what kind of people you think deserved having an autistic kid? If the education you are proud of only helps you having more reason to discriminate people in the world, that education is nothing than shit! Want to be proud of your education? Start to learn how to think equally to your son from now!
Tian Huiping: I blamed mothers in this way several times. Sorry. But they are all grateful for me afterwards. I in fact was not different than them, only I’m changed from learning being a mother of Taotao. Taotao is a mirror and lighthouse to me. When I am confused and going to wrong direction, I can discover it from Taotao, and know how to come back to the right me. Because of Taotao I found out how much shit we have in our thoughts, we must clean them up.
Taotao walks sometimes very slowly upstairs. I first tried to tell him faster, because he is in the way of others in subway station. Now I just think: ok, why others should not learn, that someone can not walk faster, and they can go around him. I often enjoy watching the picture: how Taotao makes differences. He is harmless, why not! A picture of harmony.
So this is the most important value of people with disabilities: telling us what is equality and respect. If they don’t keep their unchangeable way among us, there would be a world of unlimited dictators, where only the “standards people” are accepted, where each of us must be rejected one day, because there isn’t a standard, every body is individualized, every body is different and has his special needs. I do it from me, from every detail in my life, and try to influence others: start it to respect my Taotao.
I originally don’t think, that woman should be evolved in the work outside the family. But Taotao encouraged me to develop my potential power and ability, and to my surprise I did it! By the end I would share wit you: women are living only for love. From love comes respect. And the more you respect others, the more you are loved by others. One should not only live for herself, this is my belief. I don’t know if it were my nature. Yet I’m grateful for Taotao, because of him, I would never live only for myself.