Translated material
"There was a scream in our house"
Eleanor never spared her son and did not make him discounts. She is sure: pity is a feeling opposite to true love. Thanks to the upbringing of Eleanor, her son, Gene's dazzle, lives at his age, regardless of the family - despite the development of development
We help employment and accompanied accommodation for people with disabilities collected 1,855,823 We need to donate 1,892,668I repeated frightenedly: "Baba Yaga, Baba Yaga"
In Russia, about 12 million people with disabilities (this is like a population of Moscow). Only 28.8 percent of them has stable work. Among these people is the forty -year -old Gene. We did not immediately be able to agree with him and his mother about the interview: the genes have a rather dense schedule. On the eve of our conversation, he returned from Suzdal - he went there to dance competitions.
Gene has been dancing for nine years. He began dancing after cochlear implantation - an operation that allows partially compensate for the loss of hearing.
“He has a cochlear implant on one ear, on the other - a hearing aid. After the operation, Gena began to hear sounds, speech - not in the format as we would like. That is, he does not hear how we are. Nevertheless. When implantation was carried out, they were forbidden to play sports. And he decided to dance. The doctor allowed, we found a teacher, Gene tried - and he liked it. ”
For the first three years, Gene went to groups where there were no people with features. Eleanor recalls that in training no one paid attention to the problems of genes with hearing. He danced along with everyone.
Gennadifoto: Vladimir Averin for TD“As best he could, he repeated. And then we found a studio where guys with different violations are engaged. Gene is dancing there now. ”
Gena's hearing problems began early - after he celebrated his second birthday. The boy had already begun to pronounce individual words, and then suddenly fell ill. Gene was infected with chickenpox. Plus, he caught a cold: in the kindergarten at the height of winter he was washed with cold water.
The boy was ill. He had a high temperature, Gene began to crazy-it seemed to his mother that he saw something that scares him. The boy repeated all the time in fright: "Baba Yaga, Baba Yaga."
Doctors prescribed antibiotics and hormones, and soon Gene recovered. However, Eleanor began to seem that something was wrong with his son. She had the feeling that Gene hears poorly.
“We had no specialists-suingers in Navabad (we lived in Tajikistan) at all. There were Lors. They shouted, knocked, Gene turned to sounds - and the doctors believed that, therefore, he was fine with hearing, ”says Eleanor. - Now we know that Gena had a genetic predisposition to reducing hearing. In the children of my second son, she was found. The younger grandson is now two years old, he has the first degree of hearing loss, he is already observed by a supologist, is registered with birth from birth, we are engaged in outstanding training - so that there is no developmental delay, like the genes. ”
Gennady and mother discuss the table that Gennadihoto is currently working on: Vladimir Averin for TDEleanor now thinks that, perhaps, in childhood, during the development of sensory vision and hearing, it was impossible to give antibiotics at all - it was necessary to look for alternative methods of treatment. But now it’s too late to change anything.
"When he speaks, then you will come"
Eleanor began to notice strange things behind her son. For some reason, he began to distort the words that, before Gene's illness, began to distinguish correctly. And he had not reacted when his name was.
“They played with a cousin, my niece. When we called them, she turned, but Gene was not. For me it was an alarming bell. And they told me: “Yes, he is distracted simply, he is a boy, his attention is focused differently.”
Gennadifoto: Vladimir Averin for TDMeanwhile, Eleanor was becoming increasingly difficult to raise a son. Gene often began to act up and cry. Sobbey nights began. The three -year -old Gene cried night on end. Now Eleanor thinks that, most likely, his son was naughty, because he was scared. He actually ended up in a vacuum, and the sounds and colors of the world around him gradually fades. Gene could not explain what was happening. Therefore, I just sobbed.
“I began to suspect that Gena had problems not only with hearing, but also with vision. I went to the oculists. They told me: “Well, when you speak, then you will come.” I tell them: “How will Gena speak when he doesn’t hear?” But they dismissed me. ”
Gene never spoke. When he was four years old, Eleanor fell on an operation in Moscow: she found Glaucoma. The doctor who operated on her noticed that Gene draws, tilting his head very low. He immediately asked: "What do you have with your child's vision?" Gena looked and found that his vision fell to minus five. Then the fears of Eleanor about deafness were confirmed.
In addition to problems with hearing and vision, one more arose: due to the fact that Gene was deprived of the opportunity to contact the world normally and receive information, he diagnosed a developmental delay.
"He is healthy, just does not hear you"
Eleanor and Gena returned to Tajikistan. There were no schools for hearing impaired in Navabad. Therefore, at the age of five, Gena was arranged in a specialized kindergarten of a boarding school in Tashkent, to Uzbekistan. Early morning, Monday, Eleanor, took her son to the kindergarten 140 kilometers from the house, and on Friday after lunch she took the weekend. For a year, while Gene went to the garden, he stopped talking.
“Now I understand that for him it was an injury: he fell into an inconsistent environment. Gena began to do, like non -speaking children in kindergarten, not to speak, but to poke his fingers. As a result, we decided that we will not carry it to the boarding school anymore. ”
Gennadifoto: Vladimir Averin for TDThe gene issued a disability, and then, when it was time to go to first grade, the parents agreed on home education. The boy had a hearing aid, but he still did not say anything. Eleanor herself took up the upbringing of her son. By education, she is a teacher - she worked at a music school - and decided to figure it out in the methods of teaching deaf -blind and hard of hearing children.
Eleanor took up the matter seriously. I searched for information wherever I could, went to Moscow with my son for treatment, once brought a teacher from the Institute of Correctional Pedagogy to Tajikistan, extracted didactic materials, invented different ways to at least a little to catch up with my son’s lag in development. I taught my son to read. When Gena began to understand the syllables and words, Eleanor took photos of family members, signed them, and then cut off the signatures and invited the genus to correlate words and images.
She did this exercise regularly. The whole apartment was hung with cards with the words “toilet”, “bathroom”, “refrigerator”, “TV”, “shell” and so on.
Gennady with parents): Vladimir Averin for TD“I had to invent a lot of things myself, to peep on how experts work when we went to Moscow. I tried to do everything I could. I did not have a curator, and it was not easy. How to convey the meaning of words, for example, “socialism” or “communism”? What picture to choose for them? "
"You are so quiet!"
Eleanor still carries a notebook and pencil with him. Sometimes it’s easier for her to communicate with her son with the help of correspondence. Gene did not speak the language of gestures in childhood, Eleanor also did not know him and could not teach his son. Sometimes, in order to say something to the boy, he literally had to scream. Otherwise, he did not hear.
“There was always a scream in our house. When I came to work, to a music school, my colleagues told me: “You are so quiet!” I replied: "I'm quiet, because I was already shouted at home." My voice eventually became much lower than before. ”
Gennady in his apartment: Vladimir Averin for TDFrom childhood, Gena was taught to take care of himself. Despite the problems of the boy, Eleanor did everything to make her son independent. According to her, the task of any parent is to "let the chick out of the nest." She taught her son to cook, wash, clean and fully provide herself in everyday life. After thirty, Gena began to live separately (the family had already moved to Moscow by that time).
Now he comes to his parents and brother. Just in case, Eleanor has the keys to the son’s apartment: sometimes there are force majeure cases and needs her help. For example, once Gene was busy with work and did not notice how he almost flooded the neighbors. Eleanor arrived in time.
“He likes to live separately. He is a full owner: what he wants - he will prepare, as he wants - he will get out. It is more comfortable for him alone, ”she recalls. - It was scary to let go of the gene, but he demanded that. I had to fight my fears. Now I’m reaping the fruits of my labors and rejoice for him. ”
"I love hard love"
Now is the gene of forty years. He has long been making a living. Gene works as an artist and paints ceramics in inclusive workshops current “Circle”. Grandmast friends told about this place. He became interested, and he began to travel to the workshops. At the very beginning, the genes could not be sculpting forms of clay. He was angry when “marriage went”, cursed with the master and even wanted to leave. Eleanor convinced him to stay.
In the apartment of GennadyFoto: Vladimir Averin for TDAs a result, Gene is satisfied that he works in workshops. If he doesn’t succeed in something, then they help him and teach him how to do it right. In current people with features are treated as equal and give them the opportunity to take responsibility.
“With Marina (Marina Men is the head of the Circle of Circle charity foundation), he has a relationship with me. Marina is also a mother, do you understand? Marina and Gena are loved and swearing, it happens differently. Like in a real family.”
Eleanor is still sometimes accused of being too tough about her son. A few years ago, at dancing competitions, she was asked: “Why weren't you next to Gena when a lace was untied during the competition? What kind of mother are you? " Eleanor treats such comments calmly:
Gennadifoto: Vladimir Averin for TD“When we say“ I pity you, ”this means that we love ourselves, and not a child, whom we regret like a puppy. I love my child with hard love. I set the task, I think that he can himself. And if he cannot do something, how to do it so that he succeeds. ”
Inclusive current workshops are a unique charity project that makes it possible to self -realize and earn money to people with disabilities in vision and mental problems, including those living in neuropsychiatric boarding schools. Current artists produce multi -colored ceramics and carry out corporate orders, communicate and live as one large family. In order for people like gene, they can continue to work and feel necessary, the workshop needs to pay rent, purchase materials and pay salaries. There is often not enough money for this. Even a small, but regular donation can help workshop and continue to help those who often unfairly find themselves beyond the side of a full -fledged life.
We talk about various funds that work and help in Moscow, but Moscow experience can be useful and used in other regions of the country.