Translated material
The educational program is minimum
How they win the right to education for children with Down syndrome in Irkutsk
We help mine and my mother’s school collected 1,695 939 r required 1,660 171 rThe collection of funds is over
The future conqueror of Baikal
Egorke is four months - he is the youngest ward of the center "My and mother's school". In a couple of years, Yegor will go to the center for classes on speech development, sensory mathematics and drawing. And now the center helps his parents navigate special children in the new world: it consultations with a psychologist, pediatrician, masseur.
Today, Olga and Alexei Rychangov, the parents of Yegorka, came to the first consultation. After we are talking with Alexei. He has a second marriage and a third child. The first of them with Olga Kid Daniil, a healthy boy, in December he turned two years old.
Olga had a calm pregnancy and good birth with Egorka. In the maternity hospital, they did not talk about Down syndrome for a long time, they were waiting for the results of the analysis. Then, the parents of the Yegors were given an envelope and said: "Well, look what you have there." The abbreviation was written there, but Alexei already knew what it means.
“The second time in my life I did not know what to do. The first time is to survive the divorce and the fact that my daughter will not live with me. The second, most difficult period in my life, and insomnia, and everything in the world. Up to the point that tears in the eyes. Until the fact that you are driving, and your eyes drag out with tears. ”
Egor photo: Anton Klimov for TD Olga, the mother of Egorki, asked eternal rhetorical questions: “Why are we? Why do we have healthy parents? What did I do wrong in my life? Who is to blame for this? " Alexei tried to remind his wife again and again that she was not to blame for anything, and no one was to blame, this is a genetic failure, it happened. But Olga still could not understand: "How could I have when I believe in God, a child with Down syndrome be born?" And she stopped believing in God. Earlier, every time, passing by the church, Olga was necessarily baptized, and now she stopped believing and stopped baptizing.
“We wanted the third, my daughter. But Olga said that if we have a little man with Down syndrome, then we probably no longer have a break. But I think that time will pass, she will leave, we plan to plan. Life continues, what should we do now? " - says Alex.
Alexei works as a leading mechanical engineer in the field of oil and gas production and production. And in the evenings, when the children are laid to sleep, they and Olga draw paintings. They buy sets where you need to paint according to the numbers, and it turns out a colorful canvas. They were so carried away that at home there is nowhere to hang the pictures. Only when you sit with such a picture in the evening, you paint, you like you calm down, but you are so deeply immersed in your thoughts that you can get to very difficult feelings - the main thing is to stop in time.
The most important thing for Alexei is to support his wife. If it breaks down, nervous - wait out to the side. Or vice versa, hug, kiss, reassure. This wisdom taught him his first marriage: many things simply do not pay attention to many things. “Why swear? Moreover, a child with Down syndrome. Where are we now without each other? Without our large family? "
Alexey, Yegor and Olga Rychangov photo: Anton Klimov for TD“We have a lot of optimism with his wife: to educate a full -fledged one, to bring him to his mind. Hands do not drop. Although something has found something last weekend, and you sit and think: what is the future of the child? During the kindergarten period, I do not see problems. Next - can the baby go to school? Can I study normally? What will happen next? "
By summer, Alexei plans to put Yegor on a bicycle - if the muscle tone allows - and to ride a four. Alexey does not build unreal plans, it does not fantasize that Yegor will become an engineer or a programmer - it will not. But why not become Yegor, for example, a professional photographer? “I think we will be the conquerors of Baikal. We want to conquer Baikal on bicycles on winter ice, probably no one has done this with Down syndrome? ”
Alexei has a lot of good plans for the life of Egor. And there is all the possibilities for these plans to be implemented. They were very lucky that Yegor was born now, not 10 or 20 years ago.
Game in the ball
In a large dance class, people are in a circle. Most of them are adults with Down syndrome, the rest are volunteers. We play the ball. Task: Catch the ball, jump with a cry "Wooh!" - Throw the ball to another person, name his name, sit down. For adults with Down syndrome, this is a difficult task-someone forgets to sit down, someone, having caught the ball, examines it for a long time and thinks what to do with it, almost everyone forgets or confuses names.
Rehearsal of the integrated theater studio "Theater as therapy" Photo: Anton Klimov for TD These people are now thirty to seconds. And this is almost their first experience in the team. They did not go to kindergarten and did not study at school. Therefore, for me and me it is so unusual to see a person with Down syndrome. I stand in a circle and also throw the ball, and I understand that the first time in my life I communicate with such people. They were isolated, just sat at home for years.
The opportunity to go to kindergarten and school for children with moderate mental retardation appeared only now - when these people have already grown with non -socialized, non -self -state adults. When they were children, there was no question of a kindergarten and school for them. Their parents were reported about Down syndrome in the hospital and immediately offered to abandon the child.
"Do not be tormented"
So that children with Down syndrome in Irkutsk go to kindergartens, Daniil should be born. And not at anyone, but with Lilia Shcheglacheva, who then will become the head of the center "My and my mother's school".
This is her third, desired and conscious child. He and her husband dreamed that the son would achieve success in sports and win medals like their older children. But Daniel was born with Down syndrome, and the dreams of parents changed.
Dani, in addition to Down syndrome, has many more health problems. For example, with digestion: partial protein intolerance and complete intolerance to gluten. “I remember, I often kneeling and prayed that he had an improvement in digestion, and always thought:“ I will not be afraid. ” Well, she persuaded herself. There was no psychologist. I persuaded myself. I will not be afraid of this syndrome, ”Lily laughs, but her eyes are tears in her eyes.
The manager looked at the diagnosis and said sharply: "When did you get in line, what did you think?"
Her son Dan survived and grew up. In three and a half years, the turn came up to the place in the kindergarten. Lilia came to the head of the kindergarten to say that now we will go through the commission - and to you. The manager looked at the diagnosis and said sharply: "When did you get in line, what did you think?" Then she said a lot more: that Danya could not cope with the program, that she could not be in kindergarten and most importantly - there is no doubt about this - parents of healthy children will be against such a neighborhood.
Then Lilia went to all officials from education, led her son to the psychological-medical and pedagogical commission, but everywhere received one answer: your son is not less taught.
- And then they say what to do? - I ask Lily.
- No. They give recommendations. It is recommended to send the child to an orphanage, a boarding school.
- So that the parents refuse the child?
- Yes. "Do not suffer, give it to the orphanage."
- They say so: “Do not be tormented”?
- Yes, yes, yes. "You can't handle it." “The transition period will come in a child, you will not cope.” This was previously said.
- Did they tell you that too?
- I was also told in the hospital to abandon the child. This was said to almost everyone at that time, 10 years ago. Well, not everyone, of course, but most received such a recommendation in the hospital. - Lilia smiles nervously.
Lilia Viktorovna in the center "My and mother's school" Photo: Anton Klimov for TD- What did you feel then when you were told?
- I have complete rejection. I just ... you know, it’s hard to feel anything at that moment. You just get lost in this space, you begin not to understand anything. What is it with the child? Here he is lying, he is the same as everyone else. And he is good, he is wonderful, he is your dear, how can you refuse him? Well, I’m a woman who is there, I have not the first child. I then, apparently, said a little, “let's not talk about it anymore and return to this issue. This is excluded for me. And that's it. " - Lilia's voice is strict, not implying doubt and options.
It was not possible to find a kindergarten for his son Lilia. But too many tears were cried in the hospital and kindergartens, too strong anger accumulated on health and education specialists. And the pain gradually transformed into force. Lilia Shcheglacheva began a systematic struggle for the right to educate all children with Down syndrome in Irkutsk.
Struggle
The first child with Down syndrome and moderate mental retardation in the city of Irkutsk, which went to kindergarten, was Ksyusha Berezovskaya, when she was five years old. Ksyusha is under the guardianship of her grandmother - Tatyana Aleksandrovna. Lilia Shcheglacheva said to Tatyana: “You see, they violate the law, you will come with me, I will help you appeal everything, I will drive you by the pen.” And they went.
We came to the psychological and medical and pedagogical commission, where doctors, psychologist, defectologist and speech therapist examine the child. Lily was not allowed into the office - she is not a legal representative. She went out into the corridor, but before that she said to her grandmother: “Don’t sign anything, take it to me, I will read, and we will decide whether to sign or not.” The psychiatrist diagnosed with moderate mental retardation, the commission wrote a recommendation to the social service institution, that is, in the boarding school with complete immersion.
Daniil at home photo: Anton Klimov for TD“Many parents take this seriously, and this is dangerous,” says Lilia. - There is such a system, five -day. You give it on Monday, you take the child on Friday. This system, you know what it led to? To the fact that gradually parents refused the children, they took home less and less. First they were given to a five -day, then for a month, then for six months, then they did not come to the children at all. ”
Tatyana Alexandrovna left the commission, and Lilia said to her: “Do not sign. Write: I do not agree! And the signature. " The grandmother did so and asked to go through the commission again. The commission sent her grandmother and Ksyusha back to the psychiatrist. Lilia Shcheglacheva suggested why they were doing this. A psychiatrist could change a diagnosis with moderate mental retardation to an easy one. And with an easy - the commission would prescribe an educational route to the child, that is, a referral to kindergarten. But the goal of Lilia was not to achieve a kindergarten for a child with mild mental retardation, but to prove that with a moderate one, according to the law, the child was supposed to be a kindergarten.
The psychiatrist nevertheless confirmed Ksyusha from moderate mental retardation. And Lilia came to the head of the psychological and medical and pedagogical commission and brought the printout of the Federal Law “On Education in the Russian Federation”.
“I emphasized everything with a dotted line, put it in front of my nose and said:“ You are now guided in the work of this decree. You must write an educational route to your child. ” She had nowhere to go. It was clear on her that she is in an disorder, but she realizes that they violate the law. ”
Danil and Lilia are engaged with a developing toy photo: Anton Klimov for TD On the next commission, Ksyusha with a diagnosis of moderate mental retardation prescribed an educational route. But the threshold of kindergarten was still far away.
The Department of Education of the city of Irkutsk said that there are no specialized groups for children with moderate mental retardation in kindergartens of the city. And there is nowhere to go with this educational route. Ksyusha’s grandmother was almost ready to surrender, but Lilia Viktorovna led her to the reception of the head of the Department of Education and dictated to her the text of the statement: “Based on Law number 273, I ask you to put your child in line in a correctional kindergarten at the place of residence. I am attaching documents. " A month later, the answer came: there are no kindergartens for such children in the city.
Then Lilia and Tatyana wrote a complaint to the control and supervision service in the field of education of the Irkutsk region, she began checking the kindergarten and ordered the correctional kindergarten to accept Ksyusha. But the Department of Education of Irkutsk filed a lawsuit for the control and supervision service. The court took place and recognized the order of the control and supervision service. Ksyusha was again without kindergarten.
The struggle for the garden lasted a year now, my grandmother complained that time has been going on, and Ksyusha could develop the age of the kindergarten before she was allowed into it. But a few days later a letter came from the correctional kindergarten number 168: "You are accepted, come."
Victory
In 2014, Ksyusha Berezovskaya became the first child in Irkutsk with moderate mental retardation to go to kindergarten. In 2015, the Center “My and my mother’s school” fought separately for each case, when the child was refused a kindergarten-and sought his own. And in 2016, all children with Down syndrome in Irkutsk went to kindergartens.
Lilia Shcheglacheva says that between the child who goes to kindergarten and the child who sits at home, the difference is like between heaven and earth. A home -made child is afraid of noisy public places, in transport is hidden behind the back of a native person. In the only class for mentally retarded children, where three children with the syndrome study - those lucky people who were lucky to have a diagnosis of “mental retardation” - in this class children did not sit at their desks for the first year, did not know how. And one child spent the whole year under the teacher's table. So the lessons took place: the teacher tried to teach children, and under her desk, the girl held her leg.
Daniil at home photo: Anton Klimov for TDTo achieve the right to study at school for his son and all children with moderate mental retardation, Lilia Shcheglacheva passed even more labyrinths of state structures than in the struggle for kindergartens.
And so, at the end of November 2016, the school principal calls her and says: “We are waiting for you, come tomorrow, we will discuss.” This means victory! So, Daniel and several more children with Down syndrome are taken to school. So, you have to go choose a briefcase, diary and school uniform. So, Danya will be like all children - a schoolboy. But Lilia does not have euphoria, she is calm, how calm people are, who waited and sought something for a very long time, and when they waited, there was no strength left for joy.
“I think we will have the same situation now,” says Lilia, recalling the girl who was sitting under her desk, “I think we will cope with her. Now we will not give up and do it. ”
Everyone has the right to education - as it is written in the Constitution of the Russian Federation. But it so happened that there is a right, and in a particular city and a specific school they say to parents: “The child is not teaching,” and they don’t take it. Why this happens, and who is to blame is the theme of another conversation. But you and I can now help to get education for children with Down syndrome in Irkutsk.
Read also
Princess in the tower of the story of a family in which a girl with Down syndrome was bornThe Center “My and Mom's School” is supporting families in which a child with Down syndrome was born. A psychologist works with parents, teachers are engaged in children. Money is needed to pay for the work of a psychologist, a defectologist, teachers, for the equipment of the sensory room and rooms for household adaptation of children.
Please arrange a one -time or regular donation in favor of the center “My and mother’s school” so that children with Down syndrome can become part of our society, and little Egor - go to school, conquer Baikal and get a profession.