Chromosome of love

For a “special” child and his family, the main problem is not his health, but the stereotypes of society about his inability to learn, work and develop along with everyone. In Irkutsk, parents of children with Down syndrome united against stereotypes

We help mine and my mother’s school collected 1,695 939 r required 1,660 171 r

The collection of funds is over

For four years, Lilia Shcheglocheva woke up in the morning with one thought: this could not happen to me. A certificate from the hospital with a diagnosis of son immediately broke. I took an analysis for a karyotype in a commercial clinic. And still I did not believe the results. Outwardly, the baby differed little from ordinary children. Taking Down syndrome was very difficult. When a child with Down syndrome appears in the family, all kinds of prejudices and myths fall on it. Many maternity hospitals immediately offer to abandon the child.

In Irkutsk, an average of 20 children with Down syndrome per year is born, and half refuse in the first week of life. No matter how advanced the early diagnosis is, in practice, parents still often learn about the diagnosis only after the birth of the baby and experience shock. “ When Danya was born, they didn’t even show him at first. The pediatrician only said: “Oh, some kind of Downenok was born, ” Lilia recalls. Such soulless doctors only exacerbate the serious psychological state of the mother at this moment.

Danya and his mother Lilia Shcheglocheva in the classroom photo: Alexander Zykov for TD

For two years, Lily and her son almost did not get out of hospitals. Dani had problems with the gastrointestinal tract, experienced two operations that did not give any effect. At eight years, Danya weighed 12 kilograms, then, finally, they diagnosed the celiac disease (gluten intolerance). The operations were not needed. “We completely changed the nutrition, and in a year it grew ten centimeters and gained eight kilograms, ” Lilia says with tears in his eyes.

We are sitting in a gazebo in the summer recreation camp "Mandarhan" on the shores of Lake Baikal.

Baikal and Origami

In a closed bay, it is finely, as in the Baltic, and the water warms up, as in Sochi. You can splashing for a long time for your pleasure.

Run to the beach photo: Alexander Zykov for TD

Three years ago, the Irkutsk authorities decided to completely transfer the camp for the rest of children with disabilities. In mid -August, the change of children with Down syndrome. “Sunny” children with mothers, brothers and sisters are resting, dealing with specialists, and in the evenings they dance at discos and arrange concerts. All vacationers - from three to 45 years old - wards of the Irkutsk regional public organization Rainbow, the only in the region specializing in public with Down syndrome.

When Danya was born, they did not even show him at first. The pediatrician only said: "Oh, some kind of Downenok was born"

In the body of the kids, moms are concentrated at the table at the table. Until the evening, each detachment should make 160 cranes. All glossy magazines from mothers of mothers were already used. Children have their own ventures. The blond Danie threw out of the window the unnecessary, in his opinion, things and enthusiastically watches cartoons on the tablet. Two three -year -old fashionistas Polina are sitting with a book on a deck chair. The five -year -old Mishan is also trying to master Origami. Some of the children hid all the wet things after bathing under the pillow. And, looking up from the cranes, mothers go to dry the bed. Older guys are preparing for a concert that will come to shoot television. In the gazebo, the adult detachment is engaged in plastic improvisation.

Children and parents made a thousand paper cranes Origami on the day of memory of the victims of the bombing of Hiroshima and Nagasaki. In the evening they were decorated with a dining room : Alexander Zykov for TD

A new theater direction for the Rainbow appeared along with the arrival of adults with Down syndrome. The oldest is 45 years old. Heat, sun, cold kvass on the table and sweet forests strawberries. The usual summer peace in an ordinary camp with special vacationers. But soon autumn will begin, the new academic year, and old concerns will return with it.

Link to school

Rainbow appeared in 2012. The director of the parents was prompted by the director of the regional rehabilitation center for children with disabilities Tatyana Family. Then the center was virtually the only place where families with children with Down syndrome could meet and communicate. Everyone had similar problems, and it was easier to solve them together. Doctors diagnosed and sent bewildered parents inhabited. There were no socialization programs, there was no adaptation. Children were refused admission to kindergartens and were not allowed close to schools . The most acute for parents was the issue of children's education.

The camp is fully equipped for children to relax with features, including for comfortable movement of children in strollers photo: Alexander Zykov for TD

The lack of information and support is the main trouble that parents of special children face. In Soviet times, children with disabilities were a cross, which parents carried all their lives almost in complete isolation. "You are sitting at home with a child, and you are afraid to show someone in the eye." But gradually the closeness leaves.

Parents, united in the Rainbow, decided to turn the situation and opened the center "My and mother's school" to help families in which special children appear.

Its main task is the early support of the family, the help of the family and the child in solving psychological and legal problems, and most importantly - the problems of socialization and education. Now, under the patronage of the center, 130 families are already.

Special and ordinary children in the camp play and engage in photos together: Alexander Zykov for TD

With timely qualified systemic care of specialists at an early age, a child with Down syndrome can develop, only a little lagging behind peers, parents say. In babies, whom experts pick up immediately, there is an active development of speech. For a “special” child, the main problem, as they believe in the center, is not a state of health, but the stereotypes of society about his inability to learn, work and develop along with everyone. This stereotype does not allow us to accept “special” children as full -fledged personalities with their capabilities and talents.

There were no adaptation programs. Children were refused admission to kindergartens and were not allowed to schools

The right to attend kindergartens “My and my mother’s school” conquered by battle. More recently, there was almost no such opportunity. Danya did not go to the garden, parents received four refusals. Then they still did not know that such refusals contradict Russian law.

Camp is a great opportunity for special kids to feel independence and choose classes themselves to their own photo: Alexander Zykov for TD

Now the parents of the Rainbow will in court will defend the right of children to study at school. The only school that was offered by eight families is located on the other side of the city. Parents calculated that the children would have to be lifted at five in the morning and carry it with several transfers. Through the court, parents will demand from the Ministry of Education of the Irkutsk Region to open a correctional class at the school in their parts of the city.

“My and my mother’s school” holds the lessons of good and tolerance in ordinary schools: they talk about special people, show videos, and then answer questions. They say that children react very positively. Things are still worse with pedagogical groups and parents who are not ready for the appearance of special students in ordinary schools.

Guys, you are cool!

Each new family who comes to the “school” advises the consultation of specialists for free: a psychologist, a defectologist, a masseur and a pediatrician. The mothers of the “rainbow”, remembering how hard it was in the hospital, try to learn about the upcoming birth of the baby with Down syndrome and come to support the family to the hospital. They assure that these first few days are the most difficult. They released the brochure of the "chromosome of love", in which they collected the stories of the center of the center. “Such meetings return parents to life. They see our children, read the stories of different people with Down syndrome, communicate with specialists and begin to realize that this is not a disaster. ”

Nikolai Marchenko and students of the integrated theater studio “Theater as therapy” in the classes on plastic improvisation. Photo: Alexander Zykov for TD

After the Sports Sports Summer Walking, which is satisfied with the Rainbow in the center of Irkutsk, to closely introduce the townspeople to special people, the inscription made by children's uneven handwriting remained on the asphalt: “Children with Down syndrome are cool.”

The Help Foundation collects funds for the annual payment of the administrative work of the Center for the Center for MY AND MOMIN School in Irkutsk, for the equipment of the sensory room for several years to come, for the annual payment of the work of specialists-defectologists and speech therapists. In 2017, the center would like to help more than 130 families with children with Down syndrome.