“The son comes and says: “Here, in the competition won.” I said, “Oh, well, good for you. And Kate we have today, imagine the hand picked up a spoon”” – about life with a child with autism in those days, when nobody knew anything about him, says Tatiana, mother of 33-year-old Katya, a student of the center “Anton near here”, the only Russian center for social habilitation, learning and creativity for adults with autism.
Katya and her mother
- My son has autism. From me, no one turned away
- Man with autism sees the world the way it is
- “70% of people with autism are forced to live under supervision”
- “The son will not pass. As long as I live, I will be with him”
- How to enter the world of a person with autism
I said, “What are you, mom, read less books”
— As you realize that Katie’s autism, when it happened?
— Let’s start with the fact that daughter 33 years. She was born in ‘ 84. This is my second child, my elder son was five years old when Kate was born. It was immediately clear that something was wrong, but nobody knew anything. I said, “Well, you, mom. This is the second child, it is not so. Read less books and watch terrible gear”.
— Hit is for you, at first alarmed?
— She did not look in the eyes, didn’t pay attention to the face. Absolutely classic picture. When I took her up, she leaned, not leant.
We lived on the Nevsky, and I went regularly, as with the kids walk in clinic. And every time I was told that everything is in order and all children are different.
And then we changed the apartment and moved to another area. And since I moved, I had to re-register with the clinic, a dairy kitchen, somewhere else. And I came to get tested. I will never forget grandma-lab. It takes blood and says: “You have urgently to the neurologist. Have trouble. You know, we have a very good doctor. If it does not help, then at least tell me who can help.” Thanks to this lab, which first said something wrong. And then we sent in the city, but there, too, nobody knew anything, put cerebral palsy just in case. That’s how we lived. She went, actually was a very difficult child.
– How were you able to diagnose?
When Katia was born, in St. Petersburg the word “autism”, no one knew. The first time I heard it from one of the school friends, the doctor. He arrived from Moscow, and so very confident, despite the fact that he’s a neurologist, said, “You know, there is a word “autism”. I think that’s it.” The daughter was then one year. I didn’t know how to behave, what to do.
A classmate said, “Nothing. Like you have a perfectly normal kid. Behave as you would behave with any other child: talk, read, listen to music, watch cartoons”. I did as he said. But it was really hard. Imagine that close to the wall. Do you read the tale, and it goes the other way looking.
We went to Moscow, my classmate found the people, the former center for curative pedagogics. We got there, we confirmed the diagnosis and helped from all sides. But few people knew what to do. There was no information. Any glimpse of knowledge. Well, start looking for doctors and specialists. Finally comes the rumor that this one knows it is necessary to it. We find ourselves.
I remember very well: Katya was gone, and he sat, legs crossed, and she sat on his leg to swing. And this Professor said, “What is autism? No, of course. Look, she came up to me”. And once it became clear that he did anything about autism knows. Since we had cerebral palsy, we are thoroughly treated in hospitals. Well, how treated, physiotherapy is done and the massage.
And when we rushed to the specialists, the psychologists, me with clear eyes said, “you Have another child? Then this deal. Otherwise you’ll spoil the lives of themselves and my husband and child. You will ruin three lives.”
Moreover, even some old girlfriends I said, “Yes, it is necessary to pass. Think look the fool. You’re not gonna let him live.” It was actually the worst for me. So we with autism are met.
Husband left me 100 rubles, and left
– How did the diagnosis of Kate’s father, your husband?
– It is clear that, as in most of our families, my dad left. It is very good, just couldn’t. And I couldn’t, because two kids and dad, which should be supported. He was very hard. But we are now best friends, and he always holds out his hand. Tragically, of course, parted.
I was very afraid: one with two children will remain. And what, and how? It was a terrible lean years, the 90s And for a while he was gone. Left the house, I remember very well, left me 100 rubles and left. Mobile phones did not exist. Gone somewhere and left. And then, perhaps, in a few months he met us with Katya. Knew where we take classes. Said, “come to me. I got a room. I lunch you have prepared, let’s go.” And off we went.
I must say that I never him nothing is demanded, not requested. He didn’t pay child support, I raised this topic. The money was given, but very little at first. But if something happened, like, I had to go to the hospital, I called him: “Yeah, be right there”. And came after 4 seconds.
He now has a family. Wife Kate, fortunately, takes, true, afraid, says, “I worry that something is wrong will do.” And so, in General, all is well, we are completely calmed down. I stopped to take offense, and he stopped. I now all the girls say: “do Not bring! We must intelligently break up, to be able to come back and say, “hi, how are you?” without irony”. Grandchildren grow together. Then me, then him. All is well now.
– How your son perceived the disease sisters, as they endure it? Helped you?
– The eldest was 8 years old when dad left. And he became a brother and dad and everything. He took Katya in the garden, picked from the garden, because I was working. Then he became a teenager, and I had to carry Kate into some classes in the city centre. In General, a school of life passed.
On the one hand, he was not scared. On the other hand, I only now realize that twists. When all the other teenagers were running through the girls on dates, he went for a walk with my sister. He is a very good student, played sports, theatre, tourism and in General everything. All were very easy, talented boy.
And now he’s 40 years old and sometimes slips: “can you Imagine, I once won in the city competition, I go home and say: “Here, the competition was won””. I said, “Oh, well, good for you. But Kate is with us today, I imagine she hand picked up the spoon.” You know, right? But, nevertheless, he is also near. He is not with us in Moscow. But always side by side.
— As you worked, did you manage to combine work and care for her daughter?
I’m a teacher in elementary school. But to go to work, we had to first something with Kate to come up. We were lucky in our area is indicative of a psychoneurological boarding school, right next to three bus stops. We then had a few people the parents of such children in the district. One mother I met on the street. It was evident that the child is unusual. One on the Playground. And had accumulated slowly group.
In the boarding school was a very good Director, he came toward us. We struck a group of day stay when it was possible in the morning to bring the child and after work at 5 o’clock to pick up. And it was a way out. Any of the nights we are there, their children did not leave, only on daytime. It is eight years old Katya’s.
Before it was a beautiful kindergarten. I’m a teacher, and then it was in the magazine, someone who works from parents. And I read that I have one of the parents — the head of the kindergarten for children with cerebral palsy. I, of course, it immediately appealed. She said, “No, it’s certainly not cerebral palsy, he’s not taking it. It’s not our baby”. But to deny your child’s teacher? And she took us at your own risk. Can’t say that I was this kindergarten is very happy, but nevertheless that was some opportunity to breathe, to go to work.
Indeed, it was not their only child. And none of them knew how to behave. But there were miracle workers. They went out on the street, managed to put some kind of patch, flowers. Of course, there was no individual approach, even approximately. But, nevertheless, something Kate learned there. One taught to crochet. The second taught that a long time could not independently dress, undress.
– There was a despondency, a feeling that life is only work and the illness of the daughter?
– Very well, of course, that I worked with. This work, like me, in elementary school, does not fall into despair. You come to the doorstep and forget that you have a million things to do because you get those crumbs surround. I worked cheerfully and from the heart. At home I was all tied up at work and could afford to go to the theater, on tour, anywhere – just with a long “tail”.
I must say that Kate has the strength to work, to do something. And all the time was this idea: “For many children I was a good teacher. Well, will be rewarded somehow? Someone my kids will help.”
In 30 years, Kate said, “mom”
And it all happened. And it happened in a miraculous way. Called disciples: “See quickly!” I saw the movie about the center “Anton near here”. Then I see online that they make repairs in the room. But the idea is this, you know that in space, too, people fly, right? And there are such centers, but I have something to do with it? And I don’t even twitching especially.
Well, inertia. I get up in the morning, take her, run to school, come back, pick up Kate. And already this track, on which, as a workhorse, riding. And not to go. And then there was a great story. This was before the New year. We were just about to go on a winter vacation to the village to my girlfriend, on the Volga river.
I have already purchased tickets, we’re going tomorrow. Today is the last day. And suddenly phone call. In the 12th hour of the night completely unfamiliar room. I pick up the phone, and there’s a hoarse voice: “Tanya?” I said, “Yes?” – “Why aren’t you with us?” I don’t know who it is. She says: “It is Arkus. Come back tomorrow”.
By the way, I still don’t know where she got my number. I then carefully watched which we have common friends, but who are we “passed”, I don’t know. And I fear not even I can say that we can’t come tomorrow because leaving. Say: “I tomorrow can’t.” And I understand that this is all the end of life. A miracle happened, called me, and I can’t. What to do? “Well, nothing, when you come, come to this, I will say that Arkus told you to come up.” So we were there. And then began what was missing all my life.
Started absolutely correct dealing with Kate. The first tutor she had Anya, a lovely girl. Young, thin, beautiful. We passed probably 3 months, and suddenly she comes up to me and said, “Tatiana, would you mind if I start to do with Katya?”
— And Katya were silent all this time?
Yes. And this girl is me, an old wolf, teacher with experience of 40 years, honoured teacher of Russia, is talking about it. I’m so sorry to look at her and say, “Anya, let me introduce myself. I am a teacher, I am engaged in development of speech, well, that was with the regiment, perhaps children behind“. This little Sparrow says “old crow”: “still, if you agree, I’ll try. I’ll be different. I know how”. “Well, for God’s sake, come on, of course.”
— But you didn’t believe her?
— No, of course not, even approximately. It is then revealed that she did indeed have a sea of formations and has a personal interest: little nephew with autism, and she went to study further. She is insanely talented specialist.
For example, Kate is nervous for some reason. Anna sits down next to me and said: “Katya, it’s hard on the soul and the people?” Looking at her, and Kate looks the other way. Anya says, “Well, nothing happens. You know, I also have that happen.” And then Kate falls silent, becomes a rabbit, stroking Anya. Anya was talking to Kate on the souls. And she could not see then that I’m here, not for me did. I also talk with Katya, but I’m talking like: “Katya, what happened? Well, what happened? Katya, come on, this is nonsense. Pull yourself together”.
We became engaged, then the summer came. First we have to Annie, I went in the summer there is no class in “Anton”, then she to us. Over 30 years of voice box numb and was inoperable. What Anka did not do it. The extraordinary patience of a man and love.
The following year, Katya is the first time I said “Mama”. At night we went to bed, I say, “good night, Katya”. And she said, “Goodnight, mother.”
As stroke, I avoided, I do not know. Very quietly she said. As happens in such moments, when the “good night” when the affection, when the silence.
And then Anya left the centre, said: “I want to work in the specialty. I want to do. Understand that I get it. I need a separate room to silence.” And these rag zanavesochki, it is clear that there is no such situation. And Annie began working as a speech pathologist, works so far. It is full of all sorts of different guys. She pulls out. We have the most adults. The most difficult, probably. But the love we have is such that we are now like family. It’s all good.
Most perceived the non-verbal person as the portrait on the wall
— You said that in the center your girlfriend has a great communication. What does it mean?
It means that every one communicates in a certain way. We arrived her yesterday from the guests from my old friend, a kind-hearted person. But even she can’t communicate, doesn’t understand. Most people perceive non-verbal man, as a portrait on the wall. If it is possible to speak, can not speak, can about him, without him. Well, there is a portrait on the wall, so what? And they teach and talk and by example, behavior – first, respect for the person, and secondly, speaking slow and simple, with pauses.
“Anton” a very simple example, explain what is autism. It’s a long reception, that is a very big time of the signal. If you have a child with autism say, “Put your shoes on. Put your shoes on. So, I said put your shoes on. Put, put!”, the same thing happens that I am 500 times sent the same request, and the computer froze. Because you need a break, you need a set of certain words. No need to say, “Look at me, why can’t you hear me? Listen.” They can hear and remember well.
You need a very careful attitude to point. All are completely different. No similar even approximately. Someone is listening, someone hears, someone ignores the sound of someone, on the contrary, loves the sounds and so on.
It learning the fact that people just really interesting in particular. It is necessary to treat him not as a disabled person, but as a very interesting person, which wants to get feedback.
And that as a teacher I understand. If I come across a private or a difficult child, I’m with him, too, in another work.
— It turns out, and as the mother in “Anton” something given.
— Yes, of course. And they’ve started with the moms especially to work. Not everyone has the ability to read a scientific article. From elderly parents, not all have the Internet, not all can include a computer, not everyone does. And to read some thick scientific book, very difficult. And here we learn practical things: how to speak, how to deal with unwanted behavior. This is the basic history of autism: why in any situation is difficult? Because the unwanted behavior happens.
— What is it? Creek?
— It can be a hoot, might just be freezing and immobility. There’s a boy with a height of two meters, which goes across. We’re going camping, we go with the crowd through the turnstile for the train. And our boy goes so smoothly down 3-4 turnstiles. Well, we already know it. It is attracting attention to itself. Should the mother look the other way in that moment, when he wanted something from her, and all. And mom at this time looking at the clock or from which platform leaves the train: “Ah, so? Well, now you just look at me”. Such analysis, understanding what was happening to him – it’s not all it is all in the head.
Sewed the bag, and we went with her to the store
— What workshops center Kate goes?
First she went to schedule. She, incidentally, at the auction work bought for big money. Kate is very nice draws. And she and the house painted, but when they come to a Studio and all draw it differently. What is called joint attention. Like when mom and baby together doing something and the baby kicks, not when, “You do and I’ll do the dishes”.
And there’s a lot of people, students, and all doing something at the same time, Kate also gladly began to draw. Then she walked a long time in ceramics. And also with great pleasure. And recently she went to a sewing workshop. And there all started making all sorts of products.
Then we sewed the first bag. Well, naturally, I bought this bag. And we went to the store in the local “roundabout” around the house, where we all know from the janitor to the cashier. Kate so a bag carried in front of him. We went and got ice cream. I went to the cashier, she said, “That you, Kate, now only the ice cream?” Katya silently this bag times – to the cashier: “What is it? Did you make them? Come on!” Well, our feeling about how Yuri Gagarin, probably. The joy, the pride, while still shy of publicity.
— She chooses workshops? How the selection works?
— All different. Someone who likes to change workshops during the week, even. On Tuesday, one on Wednesday, another on Thursday in the third. Schedule depending on the status of the student, his desire.
— And if the person does not speak? With Katya as she could to figure out what she wants to ceramics?
— So if she runs this workshop in the first place! And secondly, there is a proven alternative methods of communication when using the card they choose. There are pictures and they show what they want. And everyone has their own schedule. There are those who constantly who is not boring, and Vice versa. Katya, for example, has long mastered, but then a strong liking to this place. There’s also first baste, then stitch, then ironed, so much work. And then go to the administrator, you will be given a tag, the tag you want to link, then in a beautiful package to put it. I also had a bag at the ready.
And it’s really beautiful products. And dishes I have a whole house of “Anton” and all your friends with this ceramic utensils, plates or cups. Good product, beautiful. There’s also a wonderful master.
— What guys do in the workshops, it is for sale? Can I buy it?
— Yes, everything’s for sale. And in the center, and through the Internet, and all charity fairs. In the Hermitage at the gift shop is our products in the Russian Museum.
— The profit from the Fund goes to the work of the centre?
— Yes, of course. But it’s not the profits that can save him.
I really hope that they are closed. We talked many times with my parents. But the people, first, poor all. Families incomplete families there 1-2. Yes, all are signed on the donations of some kind, someone to 200 rubles, someone 100. I really hope their students.
For assistance to hope is pointless. And, of course, how to help while we do not know. Bring them a little bit, but it’s a very small amount of money. And the Foundation — honey story: rent, and all materials in workshops, and the salaries of the teachers. But girls don’t give up.
— How many families now?
— Man 120. (Approx.: 100 children attend kindergartens, which operates the center, about 100 families in total have been trained.) Happy are the parents whose children were diagnosed at 4 years old, and they are taught how to behave. They give lectures in “Anton”, then go to visit them and spend there field of training.
To us in the past year were coming into camp moms with their toddlers. The two ventured to come. They were very excited because we are so advanced for them, grandparents.
At the parent meeting when the camp going, we discussed that and say that that’s probably a situation where a parent some sort of busy in the kitchen or something, then I take his child, and we substitute each other. Sits is such a wonderful young beautiful woman and says, “Oh, no. I can’t give it to anyone”. – “Why?” “So he bites and bites”. We have a mom, right star. She says: “Oh, my darling. You might think that we’re all recusandae”.
— You are afraid that the centre will be closed?
Is not the word. Well, that is all, back…
— Where to?
— Within four walls.