Book of consolations
The chosen child.
Nikita Stroev is four years old. He has a severe congenital disease - imperfect osteogenesis. Such children are also called "crystal" because their bones are very fragile. Nikita already had five fractures. He needs regular treatment to help strengthen his bones. Ufond readers helped the boy pay for two courses, thank you very much. Doctors note good dynamics, and say that treatment should be continued. Ufond Program Coordinator Svetlana Hisamova spoke with Ruslan Bakhtyev, head of the Selected Children educational charity project, about how to help Nikita Stroev and his family.
- Nikita lives with his mother and grandmother. Unfortunately, it often happens that a family with a seriously ill child is incomplete. Fathers abandon such children. Why do you think this is happening?
- I thought about this question for a long time, I asked it to mothers whose children have disabilities. I often see their tired mother’s eyes. We recently gathered a public organization in Odessa, and I asked such women the question: "How do you rest?". They replied: "We go to the theater with the children" or "We organize with the children…". But I had a question, how personally they have a rest. No one could answer, because they forgot about themselves, about the fact that mother and child are not always one, that everyone has their own life. This must be remembered, and for the sake of a sick child, including. The father - a man - is left without female attention. At some point he begins to feel that his wife does not need him, that she is all in the child. I don’t think it has anything to do with a man’s fear of difficulties, with a child’s illness. We know many examples
- But still this is rather an exception, mostly the burden falls on the mother…
- That’s right. We in Ukraine do not yet have the opportunity to accompany all such families. And they all need help.
- Do you need a mediator in this matter, the "third force"?
- We need a third party who will help, tell the family in which there is a sick child, how to act in a given situation. Parents also need psychological help, they need to be prepared for the peculiarities of such a life and help to save the family.
- It seems to me that intra-family problems are exacerbated by society’s attitude to seriously ill children, to children with disabilities. Society does not accept such a family, it isolates it. Children are usually educated at home, and not always on medical grounds. It’s just psychologically easier for them at home.
- We are not divided for children with disabilities and healthy children to be together. Today, such a division, unfortunately, exists because we came out of the Soviet system of understanding disability, it was a medical view of the problem. Now this problem is being transferred from the medical to the social field. A severe diagnosis of a child is not a sentence, it does not mean that the child is not adapted to work, communication, learning, creativity. In Western countries, inclusion has been understood for centuries, and we are only at the beginning of this path.
- From a letter from Nikita’s mother: "In terms of mental development, the son is two or three years ahead of his peers, he already counts to fifty and teaches English." It often happens that sick children are gifted, chosen or something. And this is their feature. When do you need to start developing them?
- It is already possible, four years is the age. Nikita, except for his "crystal" bones, is no different from other children. And the attitude towards him should not be based on pity. He is a full-fledged, sane, developing child who needs some help and support.