Irina Khakamada spoke about raising a daughter with Down syndrome

Irina Khakamada spoke about raising a daughter with Down syndrome

A well-known politician, public figure and mother Irina Khakamada in a frank interview about how she raised her daughter with Down syndrome, and how to make everyone happy in the family or at least satisfied.

Here is the text of the article.

The fact that I have a special child will be born, I learned in the fifth month of pregnancy. My husband really helped me then. He studied everything, went to symposia in Australia and England, talked to his parents and doctors and told me: “Er, these are awesome children, all that they say about us is nonsense.”

Then I went to give birth in the United States. Americans believe that all children can be happy, especially with Down syndrome, because these children are not mentally retarded, their thinking just works differently - their imagination is more developed, and the logic is less developed. They are happy to communicate with people, and they lack the gene of aggression - this is 100% positive and kind, they love everyone who stretches their hands towards them. In the States, many people with Down syndrome study, work, get married and have their own children.

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At the end of the 1990s, it wasn’t even possible to talk about such children, there would be no more funds or aid centers.

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In Russia, unfortunately, the situation is radically different. A few months after giving birth, I returned home and realized that the atmosphere here is barbaric. In those days, in the late 1990s, it was impossible to even talk about such children, especially since there were no funds or help centers. There were only individual people. We were lucky, we found an amazing woman, a defectologist, Elena Antonovna Strebeleva. She devoted the problem of children with Down syndrome all her life, all her pedagogical developments. In the Soviet Union, its theme did not enjoy support, but it stood firm on it.

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From the age of two, Elena Antonovna began to study with my daughter, and she became socially adapted, began to share the problems of the external world, and not just do what she wanted. Sometimes these children are too adult, a five-year-old child can give a diagnosis of family relationships as a wise seer. But in the current life they do not care at all. A small child can come to the company of adults, meet someone who he liked, and not let him spend the whole evening talking to anyone else.

Khakamada with her daughter

In raising my daughter, I went through all the stages of frustration 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, there is zero knowledge. Teachers do not pay attention to special children, they just sit, and one tutor who is engaged in adaptation is not enough. Education is provided only by inclusive schools of the Anglo-Saxon type, where each child has his own tutor, he sits next to the child and at every lesson adapts all the material. Without this, such children all fly by.

Read also:Children with special needs. Every parent should know this.

The most difficult thing is to motivate such children for a long project. They persist in doing just what they like. If they do not like it, they begin to cheat as an ordinary child is not capable of. My daughter can call me and say: "My blood pressure has fallen, I am in a faint and dizzy state, and I urgently need to go home." Just to not go somewhere. To motivate her, I use my own example: “You like that I am known all over Russia, you are boasting everywhere that I’m a former politician, that I read lectures. Do you understand what kind of work it is? I am constantly working. Nothing just comes. ”

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I UNDERSTANDING HER A WISDOM OF ADULT HUMAN, EXCEEDING MY

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When she grew up, I realized that she has the wisdom of an adult person, exceeding mine. In this case, we are with her girlfriend. This is a girl who copies how I dress, who wants to be beautiful, who talks about boys, about love, about marriage. I gave her a bunch of books, I don’t hide anything from her, like children are born, for example. We have a lot of fun with her, she understands me, I understand her. All parents of such children correctly say: “Stop feeling sorry for them and lisking with them! It is necessary to communicate as with adults. ” We are going, for example, to the beach, and I understand that I forgot my glasses. And I, in fact, minus five. And I say: “I see nothing, so everything is your responsibility. If you don't take me across the road, we'll both be killed. ”

At one time I spent spending money on assistants, but I had them, and many of these assistants do not. Now the society has finally opened up for special children, amazing projects and funds are emerging, for example, Downside Up, which helps parents and young children to adapt. But it is equally important to work with children and later, when they grow up and become a person.

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Now my daughter is 18, and in addition to the pool and art school, she is engaged in the Open Art Theater, playing a major role in the play Cinderella. She even got a fiancé there who plays the prince. She also goes to the creative center "Circle", where she is engaged in ceramics and plastics, and to the events of the "Best Friends" foundation.

This is a foundation that is headed by an American who speaks brilliantly in Russian and has devoted her entire life to adapting adult children with special needs. She launched a program in which volunteer students work with children, shifted to this topic and simultaneously working on their research projects. My daughter got a girlfriend there, a second-year student. And this is very cool, because it is very difficult to find such peer friends. Even in schools with inclusive education, ordinary children ignore children with disabilities. They are polite, they smile, they are brought up, but no one will be forced to be friends.

Centers that help families with Down syndrome are definitely needed. They can give a method, explain how to cope with difficulties, inspire a full life. They can also provide volunteer assistance.Similarly, centers for the adaptation of adolescents and for the creation of a vocational training system, as well as for the creation of jobs, are needed.

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Such projects began to appear only in the last two or three years. So, my daughter is now studying in a special college, there is a program that allows children with very different characteristics to start working, to get some idea of ​​their future. Daughter there is engaged in plant growing. In my opinion, she doesn’t care about this plant growing, but it doesn’t matter, the main thing is to do something. Discipline is needed.

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THE MOST DIFFICULT MOMENTS WERE WHEN THE DAUGHTER HAS DISCUSSED THE CHILDREN OF MY FAMILIES

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I, of course, had moments of despair: “My God, I have a special child ...” And over time, I realized that there wasn’t any particular at all - a million children were the same. Some are afraid, others are too arrogant. The hardest moments were when my children were offended by my daughter. It was hard for me, but I missed it, children are not guilty of anything. The daughter, however, did not sob, did not get upset and quickly forgot about the insults. From insults beat back, she told 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, you need to have a happy child. So we do it and that's it. And every fool can whine.

The advice that I give to my acquaintances, in whom “sunny” children are born: not to be afraid and not to regret anything, to live as I lived before. Do not oppress yourself and devote all your life to these children - you need to do everything so that they adapt. At the same time there is a big advantage: ordinary children grow up and go. And these, even if they marry or get married, will still be with you. And that's cool.

It is impossible to refuse such children.

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  • Irina Khakamada spoke about raising a daughter with Down syndrome

    Irina Khakamada spoke about raising a daughter with Down syndrome

    Irina Khakamada spoke about raising a daughter with Down syndrome

    Irina Khakamada spoke about raising a daughter with Down syndrome

    Irina Khakamada spoke about raising a daughter with Down syndrome

    Irina Khakamada spoke about raising a daughter with Down syndrome

    Irina Khakamada spoke about raising a daughter with Down syndrome

    Irina Khakamada spoke about raising a daughter with Down syndrome

    Irina Khakamada spoke about raising a daughter with Down syndrome

    Irina Khakamada spoke about raising a daughter with Down syndrome

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