Mom's Crusade

This is a story about a mother who, overcoming despair, helps her son and dozens of other children with races

We help a sensory room for children with special needs collected 304,905 R required 293 107 r

The collection of funds is over

Egor comes to the kitchen. He takes a pot from the stove, a spoon and, not paying any attention to us, sits down at the table, eats porridge and also goes into the room about his business. Includes cartoons on the tablet. And under the conversations of the inhabitants, Prostokvashin fought concentratedly with Ikeevsky Luke, in the nose of which a pencil was stuck.

Five or six years ago, experts in Ufa unanimously assured the mother of Yegor, Julia Gennadievna, that it is impossible to teach the boy even to go to the toilet, not only a spoon. Now Yegor is ten. In September, he went to first grade. In the resource class of a regular comprehensive school. Yegor has a tutor, and the tutor has a supervisor. Schools for Yegor and other children with autism in Ufa were achieved by his mother. Because when specialists and officials shrug their hands, mothers unite and sweep away any obstacles.

"You have problems"

In infant photographs, Yegor looks at the frame, he has a living, interested face. In a year, he even pronounced syllables and short words. And in the pictures in the pictures a completely indifferent baby with an absent look. As if the sink that began to open suddenly slammed shut and its inhabitant remained in his house.

The diagnosis of “autistic spectrum disorder” (races) was made in two and a half years. Julia says that she had previously had fears that her son had deviations from the norm, but not one of the advancing doctors shared her fears. “It seemed to me that he was some other. It was embarrassed that he did not play the ball at all, stands with a pillar to the music, is not interested in toys. But it develops, grows, ”the mother reassured herself.

Egor and mother Julia photo: Vadim Brydov for TD

When Yulia brought Yegor to a group of preparations for the garden in two and small and saw her son next to her peers, doubts fell away. Yegor did not play, did not make contact with other children, but simply wandered around the room.

They called the doctors from the neuropsychiatric dispensary to observe Egor at home, in the usual environment. And she immediately said: "Parents, you have serious problems." The boy was driven to neurologists, defectologists, and speech therapists. And all Ufa luminaries of medicine signed in their impotence. Then Julia brought this in despair, and now she is grateful to the doctors for not simply stuffing Yegor with heavy drugs. They admit that they did not know what to do with such a child, and advised to read parental forums. And Julia went to where they sent.

"Read the forums"

In 2012, there was not as much information as now. But for Julia, who did not know anything about autism, a new world has opened. Parents have more information accumulated than all Bashkiria specialists combined. Like many, Yegor’s mother tried to look for the connection of autism with vaccinations and did not find. Then she planted her son, prone to allergies on a diet. I went to study for apparatus analysis of behavior. And she herself was able to teach Yegor to use the toilet, there is a spoon at the table. Gradually, a little bit, changed his behavior. Yegor began to look into the eyes. And even sometimes he ran out to meet his mother in the hallway. Now he comes up, pokes his head in the chest - he greets so.

Yegor on a break in the classroom strokes tactile carpet photo: Vadim Brydov for TD

For a long time, relatives and acquaintances believed that Julia exaggerates, inventing problems. They came, tried to work out with Yegor - and surrendered. Those who have not talked closely with children with RAS, often it seems that you only need to find an interesting game or book, and the child will respond. They can! Everyone who tried. “Once my husband’s sister, a teacher, stayed with him in a room for an hour. She went out and said: “No, I can't.” Well, at least they were convinced that it was not us-parents-idiots-slander and invent, ”Julia smiles sadly. She tells how at first she and her husband bought toys and, before stupefying, read a book about Winnie the Pooh, which Yegor was listening ... Now she laughs at her former and hides the approaching tears behind irony.

Heroic mothers

In any story about children with features, about their troubles and small victories, the main characters are mothers. Not experts, not new methods, but mothers who find the strength in themselves every day just live, love their difficult children and go forward. And mothers who are not afraid to talk about them, about their feelings and experiences are doubly heroes.

“When I began to study, I looked at him with different eyes. After the first lectures, she sat in the evenings and roared. Eyes opened to many things. Often - no matter how we pull ourselves - parents are angry with their difficult children: here, useless, sits - it tears papers, chews and rolls the pods. It is very difficult without emotional return.

Egor and mother Julia photo: Vadim Brydov for TD

When the child does not perceive you in any way, passes by as a stranger. But I began to study, and my anger disappeared. And now he already had some emotions. Looks in the eyes. "

Under the conversation about emotions, Yegor went again to the kitchen. With your favorite watering can. Urgently demands to get a broken pencil from the nose. And as soon as Julia takes out a stub, he immediately begins to stuff a new one.

Yourself and others

At four, Yegor was taken to the correctional garden. Just two hours a day. They could not cope with him. He ran away. He fell to the floor and screamed. For every hour it was necessary to pay, as for an additional lesson. Julia came to spy on what they were doing there. And each time I saw how teachers just walk around Yegor in circles, try one or the other, and at the end of the year they give out the conclusion that the child did not master new skills. Having taught Yegor to minimally serve himself, Julia found out that you can work with him, but specialists in the correctional garden shook their hands.

Egor is very dexterous and easily climbs to the highest structures of the children's town photo: Vadim Bryadov for TD

Julia went to all major autism conferences in Russia, drove Yegor to intensive classes to Moscow and Petersburg and saw with their own eyes such children as Yegor who go to gardens and schools in the capitals. It was small. And the Ufa mothers went on a crusade for officials.

The system resisted. Officials discouraged that the city has an excellent correctional education. That inclusion is unthinkable and never will happen. And resource schools and gardens, about which Julia tells, having seen enough in other regions, is expensive and impossible. But under the pressure of mothers, officials surrendered. In 2016, a resource group appeared in one of the usual Ufa kindergartens. And in 2018, a resource class in a regular school. With tutors, curators, supervision. Everything is as it should. And Yegor became a first -grader.

The swing is Yegor’s favorite attraction on the playground. He sways almost to the "sun" photo: Vadim Bryadov for TD

Julia connected to the parent organization of children with autism in 2014. At first she just helped with the search for money. She worked as a chief accountant and talked with people who could help, held events. But gradually parental enthusiasm and desire to turn the world completely captured it. It became difficult to combine with work, Julia quit. He says that she came, cried, spent an old life and went to the new one. “When I started working in this area, it became easier. It took the feeling that ahead is hopeless and bad. Maybe these are pink glasses? But we believe that it will be better. Without this faith, ”Julia shrugs his shoulders.

In the House of Owls

All these years, the psychologist of the Markhamat children's development center Elvira Maratovna helps not to burn out and not lowering the hands of Julia. Actually, this is a psychologist Yegor. The boy has been going to her every week for four years. This is the first specialist who did not dismiss Yegor. The psychologist simply began to work and tiny steps for a year after year pulls the boy out of his shell. Elvira Maratovna inhaled hope to Julia.

Clinical psychologist of the Markistova Burmistrova Foundation of Children's Development, has been working with Yegor Photo for many years: Vadim Bryadov for TD

Such children are very difficult to classes with a psychologist. Game, emotional contact for them is a whole thing. Therefore, during class there are sensory changes. They help relieve tension. But the Markamat Center does not have a full -fledged complex for sensory classes.

In children with races, cerebral palsy and other neurological and mental features of development, neural connections are violated. The child feels poorly his body. He feels, but does not understand the touch. It stands on a spitting rug and does not realize that it hurts him. He has a violation of the body in space.

In part, this can be compared with anesthesia before the treatment of teeth. Language, lips, cheek are numb, and subconsciously, a person is fixed on this, cannot fully think about something else. Most of the wards of the Marhamat Center constantly live with this sensation - in a state of sensory hunger, which inhibits all other processes, primarily intellectual development.

Egor is very mobile and inquisitive photo: Vadim Bryadov for TD

To correct sensory dysfunction, there is a whole complex of special games and exercises in a specially equipped sensory room. It is called the "House of the Owl." This complex gives almost endless opportunities for classes with children with neurological disorders.

In the Center “Marhamat” in Ufa, 250 children are constantly engaged in: with races, Downs, cerebral palsy syndrome, various mental disorders. Marhamat has experienced specialists, but there is no sensory room. “Owl House” is a long -standing dream of the center. And together we can implement it.

The Help Foundation collects funds for the equipment of a sensory room for children with disabilities in Ufa. The whole complex costs 293 thousand rubles. The "House of Owls" will last in the center of development for many years. Please sacrifice any amount possible for you - and we will help several hundreds of children in Bashkiria in one fell swoop to feel our body and live better.