Translated material
"We are her girlfriends"
Irina Khakamad about how she raised her daughter with Down syndrome, and how to make that everyone is happy in the family or at least satisfied
We help mine and my mother’s school collected 1,695 939 r required 1,660 171 rThe collection of funds is over
The fact that I will have a special child, I found out in the fifth month of pregnancy. My husband helped me a lot then. He studied everything, went to symposia to Australia and England, talked with his parents and doctors and told me: “Ir, these are awesome children, all that they say about them is nonsense.”
Then I left to give birth to the USA. The Americans believe that all children can be happy, especially with Down syndrome, because these children are not mentally retarded, they just work in a different way of thinking-the imagination is more developed, and logic is less developed. They are happy to communicate with people, and they do not have an aggression gene - this is 100% positive and kindness, they love everyone who extends their hands to them. In the States, many people with Down syndrome study, work, marry and give birth to their own children.
In the late 1990s, it was impossible to even talk about such children, especially since there were no funds or assistance centers Twisting this quote in Russia, unfortunately, the situation is radically different. A few months after the birth, I returned home and realized that the atmosphere is barbarly here. In those days, in the late 1990s, it was impossible to even talk about such children, especially since there were no funds or assistance centers. There were only individual people. We were lucky, we found an amazing woman, a defectologist, Elena Antonovna Strebereva. She devoted to the problem of children with Down syndrome all her life, all her pedagogical developments. In the Soviet Union, her topic did not enjoy support, but she stood stubbornly on her.
Elena Antonovna from two years old began to study with my daughter, and she became socially adapted, began to share the problems of the outside world, and not just do what she wants. Sometimes these children are too adults, a five -year -old child can diagnose family relationships as a wise seer. But in the current life they do not care about everything. A small child can come to the company of adults, get to know someone he liked, and not give him a whole evening to communicate with anyone else.
In the upbringing of my daughter, I went through all the stages of disappointment and despair. I had to spin all the time, look for teachers, look for inclusive. I found a school with an inclusive education, but I soon realized that this is good only for socialization, knowledge there is zero. Teachers do not pay attention to special children, they just sit, and one tutor who is engaged in adaptation is not enough. Only inclusive schools of the Anglo-Saxon type give education, where each child has his own tutor, he sits next to the child and in every lesson adapts all the material. Without this, in such children everything flies past.
The most difficult thing is to motivate such children for a long project. They stubbornly do only what they like. If they do not like it, they begin to cunning as an ordinary child is not capable of. My daughter can call me and say: "I have pressure, I am in a half -fainting state, and I urgently need to go home." Just not to go somewhere. To motivate it, I use my own example: “You like that I am known throughout Russia, you boast everywhere that I am a former politician, that I am lectures. Do you understand what kind of work it is? I work constantly. Nothing is just given. ”
I realized that she has the wisdom of an adult exceeding my Twist this quote when she grew up, I realized that she had the wisdom of an adult exceeding mine. At the same time, we are her girlfriends. This is a girl who copies, as I dress, who wants to be beautiful, who talks about the boys, about love, about marriage. I gave her a bunch of books, I do not hide anything from her, how children are born, for example. We have a lot of fun with her, she understands me, I understand her. All the parents of such children say correctly: “Stop pitying them and fingering with them! We need to communicate with adults. " We go, for example, to the beach, and I understand that I forgot my glasses. And I, in fact, is minus five. And I say: “I see nothing, so everything is on your responsibility. If you do not translate me across the road, we both will kill. ”
At one time, I spent breaking money on assistants, but I had it, but many of these assistants have no. Now the society, finally, has opened in relation to special children, amazing projects and funds appear, for example, “Dawnside AP”, which helps parents and young children. But it is equally important to deal with children and then, when they grow and become a person.
Now my daughter is 18, and in addition to the pool and art school, she is engaged in the Open Art Theater, plays the main role in the play “Cinderella”. She even got a groom who plays the prince there. She also goes to the Circle creative center, where she is engaged in ceramics and plastic, and at the events of the Best Friends Foundation. This is a fund that is headed by an American, brilliantly speaking Russian and devoted all his life to adaptation of adult children with features. She launched a program in which students-volunteers, shifted on this topic and at the same time working on their scientific projects, work with children. The daughter had a friend, a second -year student. And this is very cool, because it is very difficult for such children to find friends-people. Even in schools with inclusive education, ordinary children of children with features ignore. They are polite, they smile, they are raising them, but no one will force them to be friends.
The centers that help families with Down syndrome are certainly needed. They can give a technique, explain how to cope with difficulties, inspire a full life. They can also provide volunteer assistance. In the same way, centers for adapting adolescents and creating a vocational training system, as well as to create jobs.
Such projects began to appear only in the last two to three years. So, my daughter is now studying at a special college, there is a program that allows children to start working with a variety of features, get some idea of their future. The daughter is engaged in crop production there. In my opinion, she does not care about this crop production, but it doesn’t matter, the main thing is to do something. Discipline is needed.
The most difficult moments were when the children insulted the children of my friends I, of course, had moments of despair: “My God, I have a special child ...” And over time, I realized that there was no feature - a million children are the same. Some are afraid, others are too arrogant. The most difficult moments were when the children of my friends insulted her daughter. It was hard for me, but I missed it by, the children are not to blame for anything. The daughter, however, did not sob, did not be upset and quickly forgot about resentment. From the insults, she fought back, said to me later: "He is a freak." And it pleased me.
My thirst for life helps me a lot. Whatever happens around, I will do everything to be happy. To be happy, it is necessary that the child be happy. So we do it and that’s it. And every fool knows how to whine.
The advice that I give to my friends who have “sunny” children are born: not to be afraid and not to regret anything, to live as they lived before. No need to oppress yourself and devote all their lives to these children - you need to do everything so that they adapt. At the same time, there is a great advantage: ordinary children grow up and leave. And these, even if they get married or get married, will still be with you. And it's cool.
It is impossible to abandon such children.
The Irkutsk Center “ My Mamina School ” works with the parents of children with Down syndrome, providing them with psychological support and giving full information about what the Down syndrome is, how children develop with this syndrome, and what they can achieve. The center conduct developmental classes for children under six years of age, help to arrange children in kindergartens and schools. Now the center helps 40 families, and in 2016, with your support, I would like to help 100 families. For these purposes, he needs to collect 1.6 million rubles. Let's help make a few dozen children - and their parents are happy.