Translated material
Simple stories
The mother of a disabled child is tied to the house, she cannot go anywhere, and even more so to leave, because she has no one to leave him on. The only salvation is a guest house that temporarily accepts wards with developmental disabilities
We help the prospects to help-Tuk-tuk!
- Who is there?
- Cobra!
- Come in, cobra, show the policy and insurance, what hurts you?
- I accidentally swallowed a hippo ...
- You are a snake, now a hippo needs mixtures!
On the mat in the corner of a large room with a hammock and a sofa are two funny girls and laugh loudly. The doctor depicts young Katya in torn jeans, Cobra - Inna, a twelve -year -old girl with limited opportunities.
Katya is an assistant to a social worker in the project “Guest House” NPO “Prospects”, Inna is a ward of the project. The “guest house” helps families with difficult disabled people in critical situations: mom (most often people with disabilities remain in the hands of single mothers) need to go to the operation, bury a loved one, go on a business trip or just sigh, so that there are strength not to give the child to a neuropsychiatric boarding school - PNI.
Inna photo: Ksenia Ivanova for TDThe guest house is located in the former apartment of the founder of the Baroness Foundation Margageta von derh in the center of St. Petersburg, on Gorokhovaya Street. There is a living room, a sensory room, two bedrooms and an office, in which in case of lack of places there is a bed. Due to the lack of financing, now there are usually two wards, which are accompanied by one social worker, in general the center is designed for the simultaneous stay of four wards and three accompanying employees.
The story of the laughter of Inna is rather an exception. Mom Olesya took her from a children's boarding school and adopted, now she is raising her alone. In general, there are few adopted children.
“I noticed that if they are not given such heavy to orphanages, then they are very, very much loved,” says a social worker Masha. At the same time, she gives the medicine to her ward Vlad, who lies on the bed and pretends to be Masha to bite.
“Vladik, we agreed not to joke like that,” Masha gently pushes Vlad's hand and strokes him on the head.
Vlad is 14, he is lying, he has a damage to the brain and multiple physical disorders.
“Fu,” Vlad writhes.
- Come on, it is not so nasty. What do you want to listen now? Come on, as usual, I will put Vysotsky to you.
- Seven! - Vlad shouts in a thin voice and shows his eyes to the calendar, which hangs on the wall opposite. It notes there how many days left before the arrival of the mother. - Mom!
- Six already, Vladik!
Masha, a former journalist, was a volunteer of the prospect for the year and now works in the staff of the guest house:
- Get up early, sometimes you need to be seven in the morning, but the feeling that you know why you get up and go that you understand that they are waiting for you here and you need it - it changes everything. And it is very interesting to communicate with the guys, all personalities, all different, everyone needs to find an approach. Every time someone new comes, it will be nervous-will it turn out this time? In general, I don’t remember the relationship with someone did not work out. What does “we” and “they” mean? There is no such separation. This is a grateful job because the guys do not hide if they are good with you. We have such a ward topic, an adult boy, he is already 23 years old, and he is a deep autistic. And after my mother called us and said that the topic was asking for a guest house, the girls and I laughed: “This is our Oscar!”
Vlad listens to the songs of Vysotsky photo: Ksenia Ivanova for TDDad Vlad recently died of cancer, and now his mother loves him alone. We meet with her six days later, when she comes to pick up her son. While we are talking, Vlad lingeringly calls her from the next room:
- Mom!
- Now, Vladik, let's go. I will take him to the cottage, so he rejoices - this is a whole adventure for him. Guest house is salvation. Now they let me go for two weeks, I went to Latvia to my homeland and was completely calm, because I knew that he was fine here. If the first time I brought him here, I saw that he was crying, I would not send him here the second time. Vlad was premature, he did not open one light. He was sent to intensive care to agriculture in St. Petersburg. When I was there later, with me a child was writing off the equipment, and no one ran away. I went to where they drink coffee, and said: “Sorry, please, but there the child’s notification system worked.” “Ah, this is a failure of equipment,” they said. No one got up and did not go to see. Apparently, it also happened with my child. The first three days is a crisis - a stop of breathing, and now they have passed my Vlad. He died, he was pumped out, and he had a defeat of the brain. I was lying in the hospital at this time. Doctors told me: "Mommy, leave it, he will lie like a plant, you will water it, he is no boy, you are still born to another." I immediately told them: "Just do not dare to say this to my husband!" The husband was so glad that his son was born, but they still managed to say something to him. When he saw the child, he turned gray right away. We could not leave our son: what, every time to think who would give him the candy, who will sing a song to him? The husband cared about his son. When the asthma began at Vlad, he washed five times a day. We were told in the hospital that Vladik would not move, and he went on our bicycle with support. We put him in the Elizarovsky hospital in order to straighten his leg, he was imposed a special gypsum, and then inflammation happened under his gypsum, he was taken to the hospital on an ambulance, and there they ruined everything - they left the gypsum again and extended his leg incorrectly. As I saw this, I screamed. They thought they were doing the right thing. Since then, he does not walk, and his leg hurts all the time,-Love says quickly, but at some moments her breath caught her breath.
- I never felt that it was rock or misfortune. What do you feel is that help is needed - an electric lift, for example, it’s hard to carry it. The hardest thing that I can’t give the child to give the massages and physical education he needs, because the course costs 17 thousand rubles, and I need to bring and take it to free state centers, and this is impossible physically. If there were more help, then there would be no problems. Only funds help, the state gives a penny. In order to maintain a disabled person in the amount of five thousand rubles, I had to refuse a pension for the loss of the breadwinner. Such legislation. And then I retired, which means that I had to abandon the disabled person care allowance. There used to be more social help, now there is practically nothing. To move him to the country, you need to hire a commercial taxi that will transfer it and immerse it on a stretcher - this is two thousand rubles per hour. Yes, Vladik, we're going already!
Vlada is carried away, Inna and Sasha remain in the guest house from the wards.
In rehabilitation centers, they take children with whom you can do something, and with those like ours who cannot do anything, no one wants to do-If Vlad needs to constantly sit and chat with him, he is such a cheerful teenager, then Sasha is less required, he is not very easy for him, but he needs it. Sasha has autism. He always shows it very touching if he likes what you do, how you read or are going to lead him for a walk. He always demonstrates that he is good with you. He takes my hand, comes close, looks into my eyes, smiles. There are many such moments that you can’t confuse with anything - Masha sits with Sasha at the table and helps him draw at the points. Sasha smiles.
Sasha’s mother Nadezhda comes to talk to me, but so that Sasha does not be nervous, we quietly go to another room. She just returned from a sick mother from Stavropol, and she still has one day of vacation - Sasha needs to be taken tomorrow.
Sasha photo: Ksenia Ivanova for TDHope divorced her husband several years ago, lives with her mother -in -law and his youngest son. She does not work for many years-she takes care of the 28-year-old Sasha.
- We recently buried dad, and mom was left alone. I can’t talk about it - hope is silent for a few seconds. - We began to notice problems with Sasha in the second year of birth. We had a complete family, he was the first child. They darted everywhere - first to specialists, then to grandmothers, to healers. Everyone has passed. I clung to anything, I took it to special classes in the Fathers and Children Center. Then Sasha went to a special school, he has nothing to do in the correctional, he does not lend itself to correction. These rehabilitation are not taken to the centers, because they take children with whom you can do something, and with people like our children who can practically not, no one wants to do anything, no centers. Everyone wants to see the result, some prospects-but here it will not be. So we went somewhere, engaged, then he grew up, epileptic attacks began, and now we are just sitting at home. Our family broke up a few years ago. Men are weaker. And it’s easier to blame. So my husband accused that I gave birth to such a child. Nine years after the birth of Sasha, I really wanted to give birth to a second child and gave birth to Vanya. The relatives were against - they were afraid, and I decided and did. How do we live? But no way. We live four of the mother’s mother. She is like a mother for me. Also an elderly sick person.
“We live on Sasha’s pension, with all the allowances it turns out about twenty thousand rubles, plus my pension and a mother -in -law pension,” continues Nadezhda. - In my free time, I can sit with someone else's child like a nanny. I have no resentment of life or people. I live according to my formula - no offense. If a person wants to offend you consciously, then he is bad. How to be offended by a person if he is bad? And if a person did not want to offend you, and you were offended, then the fool himself invented. But my guilt was strong. What did I do wrong? This was a huge feeling of guilt for Sasha, I went to a psychologist. There is still the remnants of this feeling of guilt, but I can somehow control them. They told me here that many mothers with special children have a huge feeling of guilt before everyone. I don’t think about fatigue, I think how to be further - I have two sore elderly mothers and sled, and I need to fold it so that everyone is comfortable. Then it will be good for me. I even thought about the boarding school, advised some exemplary, familiar, a friend gave her an adult child. I'm not ready for this anyway. When this center appeared, it was just a salvation. The third year we go here. I gradually started, first left for one day. I never torn him away from myself, I was afraid. Then he is calm. When they have a window, I am happy to send him here. I went to my mother and began to bite myself: what a bastard I am, I am not even worried. Now, if there were centers, like these, so that I could calmly give it to any moment and do some kind of business. Well, in the end, relax. But this is probably too gorgeous. Low bow to the girls for help.
Well, in the end, relax. But this is probably too gorgeousNPO “Perspectives” is one of the largest and oldest funds in St. Petersburg with an impeccable reputation and a large number of directions for assistance to disabled people and difficult children. Their guest house has been working since 2011 and has been accepting to visit (no more than one month a year) of wards with multiple severe forms of developmental disorders (aged two to 51 years).
In 2015, 66 people received the guest house. In total, 458 children passed through the project, some of them were visiting many times.
Sasha and his mother Nadezhda photo: Ksenia Ivanova for TDIf you have a child with severe disabilities, then, in addition to PNI, there are no places where you could temporarily give it, except for such small charitable projects as the “guest house”. And there are no analogues to the “guest house” in St. Petersburg either. However, it is very difficult to look for money for him: philanthropists first of all want to help children, not families. In 2016, 95% of the project was covered by two private donors. For 2017, financing has not yet been found.
Even our small regular donations will help the mothers of children with disabilities sometimes take a breath of breath, and their children will not go to PNI.