“I'm not a hero”: How children with cerebral palsy and their parents live in Russia and Europe

This week in Russia suddenly loudly, massively and openly started talking about the problems of children with special needs, as well as about how indifferent and often cruel to them is society and the state. The reason was the incident in Nizhny Novgorod, which was told by the supermodel and the founder of the Naked Heart Foundation, a charitable foundation for helping children, Naked Hearts. Her sister Oksana, who was diagnosed with autism and cerebral palsy a few years ago, was expelled from the cafe, as the establishment’s management considered her an undesirable visitor.

The story has caused a stormy response in social networks and the press, but the main conclusion from it is yet to be made by society. Thousands of sick children and children with disabilities, as well as their families, face such problems every day, but it is not customary to talk and think about this. We asked the mother of a child with a disability, Ekaterina Shabutskaya, who lives in Germany and works as a physical therapist for children with neurological lesions in Russia, what path she had to go and how to help special children become happy.

Every day I write dozens of people from Russia, Ukraine, Germany. They tell their stories, ask for help. I will share two stories.

Germany

“Our baby was born ahead of time, and the doctors immediately said that he was seriously ill, that we would have to treat him for many years and perhaps he would never be healthy. That an urgent operation is needed that stabilizes his condition. Then there will be a long recovery period in intensive care, and we will be able to take it home not earlier than in two months.

My husband and I sat with him in intensive care every day. They kept him on his chest, entangled with wires and tubes, rocked, fed, consoled, put to bed in an incubator, drove for a walk. Doctors, sisters, physical therapists supported us very much, told us about the treatment and rehabilitation of children with such a diagnosis, taught us to care for our son properly and work with him. A dietician for hours explained to us the peculiarities of his feeding. Financially, everything was quite simple, the state assumes all costs for the treatment, rehabilitation and technical equipment of such children.

Ten years have passed since then. Our baby rides a super fashionable motorized wheelchair with a joystick, goes to school, has many friends and already has favorite and unloved teachers. Of course, he cannot master the school curriculum, nor can he master any, but he plays with other children, plays roles in school plays, drives around the yard on a special bike (a bicycle, walkers and all the other equipment he needs are covered by state insurance, and change his as soon as the child grew out of old). Cooks with friends in the school kitchen jam. He also works with physical therapists at school every day and, of course, travels and tours with his class throughout Europe. He himself did not learn to eat, but his teachers fed and watered him, changed his diapers, changed his clothes if he was overpowered for a walk. They have time for everything, because there are four out of ten children.

Parents at the playgrounds say to their children: “Go play with the boy, he does not walk.”

My child will not be healthy, but he is happy. We were so afraid when it all happened: what will happen to us and what will happen to it? But he is happy, and we are happy, because he smiles and laughs, and so many wonderful people help us. Yes, the state pays for its treatment in hospitals, its medicines, its rehabilitation and technical means, but people help us. They are smiling at our son on the streets - and helping. They pour us coffee in the hospital, teach us how to wear it correctly or lift it, comfort us when we are scared - and help. They teach our child and take care of him at school, they enthusiastically tell us about his successes - and help. Parents at playgrounds say to their children: “Go play with the boy, he does not walk,” and help. We are not alone. We can work while he is at school from eight in the morning until four in the evening. Our life goes on, and our son laughs and cries. He has it, this life. And thank you so much to everyone who takes part in it! I want to say to moms and dads: do not be afraid! Everyone will help you, and your child will delight you every day. "

Russia

"He was born, and they immediately told me: he is not a tenant, give up. Even if he survives, he will be a freak all his life, you will pull him down, there will not be enough money. They all opposed - doctors, sisters, roommates, and ours husband's parents. Horror! Well, we could not leave our child. They took him to intensive care. We were not allowed to go there, we sat at the door, and we were not told anything, nothing could be learned. Only shouted and chased us.

Then, when they were discharged, the doctor did not talk to us. I didn’t advise any specialists, I didn’t explain anything - either how to feed or how to nurse. I brought it home, sat down and cried, it was so scary. I was looking for all the information myself, thanks to the Internet and other mothers of such children. It turned out that we need a special diet, special care products, and special exercises. A lot of mistakes were made then by ignorance, for example, they did massage, and neurological children could not be massaged, and epilepsy began. And also - what to do during an attack, everyone found out for themselves. The first time they called an ambulance, they took him to intensive care, and there they tied him up and did not feed him, and no one came up to him. I didn't call the ambulance anymore. We went to the hospital only once, when it was necessary to arrange a disability. So there you need to collect 150 certificates to lie down, and carry him everywhere with you. And in the hospital, locked up too little joy, he yells from the stuffiness, the sisters yell because he yells. They say they freak out, and we care.

Disability we have issued quickly, only three months in instances, wound, lucky. Then he had to knock out a special carriage. I went about five months. Although what went? Compensation is in our area - 18 000 rubles for the street and 11 000 for the home. A stroller costs 150,000, if it is such that he can sit in it, he can extend his back, there is no way whatsoever. And then it turned out that the wheelchair is not needed, because as soon as I go outside with him, the neighbors immediately start yelling at me: “Keep your monster at home, there’s nothing to scare people with”. And the boys throw stones at him, and their parents laugh. Once a stone hit him in the temple, and the more I didn’t walk with him.

The boys throw stones at him, and their parents laugh. Once a stone hit him in the temple, the more I did not walk with him

Of course, I can't work, I sit at home with him. I study it myself, I teach it to crawl and sit, letters, numbers, colors - everything myself. They won't take him to school. I agreed with one teacher, so she will visit us for money, and then I hope to persuade the school principal to allow us to pass the exams. He already reads me even. Just can not walk. And we will not go through this commission, PMPK: there we need a psychiatrist's opinion, and a psychiatrist gives tests where you need to take things with your hands. But I can't take mine with my hands, my fingers are not unbending, well, the psychiatrist has made such a diagnosis with which they won't even take us to school of the eighth type. Yes, and we do not have this school of the eighth type. No, except for the usual, no. And there are stairs. Who will wear it? So I myself.

And you still have trouble with medicines, you see, they were forbidden to import them. What to do, I'll never know. Where to get them now? He will die without them. But I am so glad that I did not give it away, you have no idea! Well, I would have suffered all my life that I gave the child to death with my own hands. He wouldn't have survived there, but you know what's going on there? And so every day I say to him I love, I love, and he laughs, and I laugh with him. "

I have 254 patients in total, 254 children with cerebral palsy. And everyone has such a story. There is not a single parent who would not be persuaded to give the child. There is no one who would not talk about freaks and punishment for sins. There is no one at whom they would not stare at the streets and poke their fingers. I myself have such a child, and I took her to Germany. There she goes to school, everyone smiles at her. Her medicines are sold there, and in Russia they are banned like heroin. We come to Russia for holidays, and I remember how it is, when they scream in the back, when children are taken from the playground, if we come, when the administrator of the Obraztsov Theater replies to me: "Freaks in the circus show, and we have a theater, then children nothing to scare them. "

A sick child is always a tragedy. But in Germany the tragedy is only in this, and everyone around us helps, and my child has a normal happy childhood. In Russia, even the wheelchair is refused to be compensated once every five years, and everywhere there is rudeness, and everywhere there is a million pieces of paper and instances, and come back tomorrow, there are no medicines, no help from the doctors, no school, and no rehabilitation either. I studied in Germany as a physical therapist because in Russia they do not know how to deal with such children. And now, again and again putting each next child on his feet, I am amazed at how many of them could have been living for a long time already healthy, if only they were engaged with them. How many have been told that with epilepsy, rehabilitation is generally impossible. There is no point in dealing with a child earlier than a year. This is the illiteracy of doctors. It is compensated by our heroic mothers and fathers. Here they just know everything about the methods of rehabilitation and hunt for specialists who are mainly brought from abroad. Do you remember the story about the girl who was put on her feet in Germany in three days? In one of the worst clinics in Germany, by the way.

What can we do to help these families? Stop interfering. Smile at these children on the street (you have no idea how important this is!). To help in transport and on the street. Do not create obstacles for them specifically - do not prohibit the importation of drugs and equipment, do not force them to run and collect information for months, do not yell at them, do not tell them that their child will never recover (especially if there is not enough education to evaluate it), do not rush into them with stones, do not take them to the police because they dare to come to the cafe. We can not add to their torment. We can help shape public opinion so that it is a shame to leave your child. To be ashamed to shout: "Take your ugly!" At first, just a shame. And only then a new attitude towards them will appear. Do not tell me: “But we don’t have this, here we have a boy with cerebral palsy walking, and no one touches him.” Help, until there is no one left who will say: "And this is how it is with us." That's all. Do not need anything else. Just for everyone to remember this and pass on.

In the meantime ...

I am not a hero. I can't live like this. I am ready to work for days in order for my child to go to school and smile. And I work for days. To life in Germany.

Photo: 1, 2 via Shutterstock, The Village