The syndrome is given

As a little girl with a down-syndrome became a fashion model, a Facebook star and a school favorite-Tatyana Zhurina talks about her unusual daughter Apollinaria

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

The collection of funds is over

- How did you find out that the VAC will have a special child?

- I learned about the diagnosis after childbirth. I just gave birth to Pauline, I lay on the maternity table, and there are doctors with funeral faces around. And instead of congratulations on happy motherhood, I hear: "Your child has a suspicion of Down syndrome, but you can refuse him." For any young mother, such words are the most terrible in life. The appearance of the child at the first moment shocked. My daughter's eyes were slanted. It is to the child’s non -standard appearance with Down syndrome that the doctors immediately draw the attention of mothers and sometimes allow themselves incorrect statements.

“Did you answer them right away?”

- I said that we will deal with this issue. In a state of postpartum shock, I don’t really want to debate! At that moment I was more worried about the state of Polina’s physical health. Is there a pathology of internal organs. Doctors suggested a severe heart disease, but I did not believe it, since nothing similar was revealed during pregnancy. Subsequently, it turned out. The heart of Apollinaria is healthy.

Tatyana with her daughter Apollinaria Photo: Anna Ivantsova for TD

- Do you can predict a Down syndrome even at the stage of pregnancy?

- When I gave birth to Polina, I was already an adult woman, but no pathological changes in ultrasound, blood screening and other tests - the doctors themselves were amazed and shocked by the birth of such a non -standard child. In Europe, there are mandatory tests for women aged, but we have paid and are made at the choice of the attending physician. Recently, a blood test has appeared on genetics, in particular, by Down syndrome for those who want to know for sure, but it is expensive, costs 40-50 thousand rubles.

- According to statistics, nine out of ten women who know in advance about this diagnosis are terminated by pregnancy. Maybe it is better to stay in ignorance?

- I am an opponent of abortion and would not do so under any circumstances. This is my personal opinion, but in the place of my mother, who heard such a diagnosis and survived a lot of unpleasant minutes, I would definitely begin to look for communication with women with the same problems on the Internet. For almost 14 years now, the forum “Cape of Good Hope” for parents of children with Down syndrome, our organization, the non-profit partnership of parents who stretch children with disabilities, “Cape of Good Hope”, of which I am, has also come out of it.

Apollinaria at home photo: Anna Ivantsova for TD

- How did your relatives react to news about the diagnosis of Apollinaria?

Your child has a suspicion of Down syndrome, but you can refuse him

- The reaction was ambiguous. At the first moment, the husband was at a loss and offered to abandon his daughter, and my mother fell in love with her granddaughter with all her heart. Other relatives were against it. This is expected when, in a successful normal family, not a beautiful pink child is born with good income, but someone who drops out of the usual framework. No one understands what to do next. The path of an ordinary child is clear: kindergarten, school, ordinary life of an ordinary person. In the case of the birth of a special child, especially a child with mental disability, everything is unclear. Therefore, sometimes doctors describe nightmarish horrors, which, in principle, are not and may not be on the way of the mother with such a child-but for some reason they consider them to warn about them, without really knowing anything about Down syndrome and, perhaps, even never before seeing such children.

Apollinaria during breakfast photos: Anna Ivantsova for TD

- Didn't anyone defend Polina?

- In the maternity hospital there were very good doctors, the factory supporting me very much. Gave me the phone number of Dawnside Ap. My girl gradually won the love of loved ones. Our children are often born weak, small, with severe hypotons, many in the hospital are fed through a catheter, since there is no sucking reflex. When Polina was only transferred to the hospital, her older brother returned from abroad, he was fourteen at that time-and he categorically opposed his sister's abandonment. Abroad, he saw such children in normal conditions and told us that if his strange parents are ready to give his own sister to the house of the baby, then he has a passport, and he can pick it up and educate it.

- Now Polina is 12 years old: she sings, dances, is engaged in riding, studying in one of the best theater schools. Probably, the attitude towards her has become different?

- Yes, now they began to be proud of it, but not all relatives can overcome internal rejection in their souls. It is like nationalism or racism - tolerance is brought up for years and generations. Someone in the shower, despite all attempts to hide and hide, remains attitude to such children as second-class people.

- She even became a children's fashion model! How did her career begin?

Polina was very small and thin, with a specific appearance, but it was on the basis of her extraordinaryness that I wanted her to try herself a model. It seemed to me that she had some special charm that would help to advance in this area. My girl and I often throw gifts in the form of meetings with people who help to realize our dreams. So, the Lord brought us with the designer of the Babyteen agency Marina Maro . Marina made with Polina calendars on a social topic. They hung in maternity hospitals, hospitals, photos of these calendars hung in the Public Chamber and State Duma of the Russian Federation.

Apollinaria plays on the playground during a walk photo: Anna Ivantsova for TD

Everyone was satisfied, and only the writer Tatyana Solomatina opposed Facebook against the “glamorization of disability”: she brought out “excellent Apollinaries” as a common housestone-they say, mothers should refuse such children or do abortions, and children with disabilities have no right to be beautiful. I didn’t even understand that I had to be angry - for a long time above that! Everyone who could have risen to my defense. They wrote and called with words of support both deputies and ordinary people. As a result, Facebook himself closed the page with a straw.

-So, there was some kind of reserve of tolerance in our society?

-And I believe that sometimes tolerance in Russian is scary. Shouting about your protection, they will flood you. This happened with the unfortunate girl Masha with the Down syndrome. Remember the famous story? Her mother was a teacher and brought her little daughter to classes with her fourth grade. When they made a photo album, parents asked not to post her photo. A completely fair requirement, because the child by law was not a member of the class. But when I, the mother of the same child, wrote about this on Facebook, her selfless “defenders” promised me to shoot and hang.

It is like with nationalism or racism - tolerance is brought up for years and generations

- But what about the feeling of solidarity with my mother?

Why can't you get anything in our country? There is no necessary legislation, or laws do not work. Masha according to the law should be in kindergarten, and not at school. She was asked to remove the photograph, because this girl was a completely alien to these schoolchildren, and not because of her Down syndrome.

During a walk, Apollinaria met her English teacher photo: Anna Ivantsova for TD

-Your girl acted and studies at the theater school of Sergei Kazarnovsky “Class Center” ...

- I did not think that Polina would even pull the correctional school, she had great behavioral problems, but her creative makings helped her a lot. From the age of five, she was engaged in music, then Russian folk dances, began to perform on stage. She himself was extremely difficult for her to go to the stage: she was carried, torn away from people. But when Polina fell on the stage, she seemed to become a different person and without any fear of the stage and mass of people in the hall worked out the number. It seemed to me that this was her calling.

And everything is simple with the school - it is located in our district, I was offered to go there by our district department as part of an inclusion experiment. As a result, it turned out for only one Polina.

- At school, everything develops normally?

- With peers, everything is easier, especially when Polina was small. She quickly joined the team, she immediately had a girlfriend who began to patronize her, and in general all the children began to take care of her.

Apollinaria plays on the playground during a walk photo: Anna Ivantsova for TD

With inclusion, everything is more complicated, because what is it? This is not just a child comes and sits in a class - this is a constructed system, but we simply do not have it. According to the inclusive standard, which should be accepted soon, the tutor must constantly be with Polina. For six children with mental disorders, one such teacher is laid. But no person will go to the salary that the state offers the tutor. In theory, I will have to pay extra and even look for him. It seems to be a lot to change with the adoption of new rules, but I do not impose big hopes on it.

- Maybe at least in ten or twenty years Apollinaria will live in a more fair society with equal rights for everyone?

- I have been living in Spain for a long time in the summer, visited the Scandinavian countries, communicate with my parents from Germany and Finland, and I know how things are there. A child with mental disorders from birth is covered by the state, there are much higher social benefits, and the system itself is more flexible. The worst word abroad is discrimination. There are human rights - ordinary or unusual, but at least our rights are respected? Here you have the answer.

Apollinaria plays on the playground during a walk photo: Anna Ivantsova for TD

- Do you see the further life of Apollinaria in Russia?

Now not very. While I am alive, this is one thing, but if I leave her life, she will either accept her brother, or she will fall into a neuropsychiatric boarding school, where there may be violence and anything. Our system is imperfect. When people with Down syndrome remain alone in their own apartment, “guardians” often appear out of nowhere, and the child is somewhere on settlements and quickly bends. There are a lot of such situations. If many of us fall into paws to the scammers, then people with mental disorders without support and support are simply doomed.

- What do you want to tell parents of children with Down syndrome, knowing that they are waiting ahead?

- Such a parent should conduct love. Seeing not a diagnosis, but a full -fledged person who will have everything in life. The child will go through all stages: it will be small, and large, and adults. Girls with Down syndrome can give birth to children and create a family, sometimes they create couples with ordinary boys. My girlfriend’s daughter with such a diagnosis married in Germany and gave birth to two twins: one with Down syndrome, the other - without.

Our children will have the future. Maybe we will still move this stone from a place and change their life for the better? I believe in our country. I believe in our people. In all countries of the world, a good life for special children did not come by itself. It all started with us - with parents. We must help our children with our faith in their strength and active support.

Apollinaria learns to play the piano photo: Anna Ivantsova for TD

- How did your girl achieve such amazing successes?

- Success did not come immediately. This is a long and systematic work of Apollinaria, teachers and the whole family. It is very important to identify the talents and potential of the child. Find people, teachers who will help to develop these talents. They motivate the child for success. It is no secret that when difficulties arise, a person can quit what has begun and never try again. And a special child especially does not like to overcome difficulties, you need great patience to move forward with small steps. I bow before the Polish teachers. They have been with her for many years, and thanks to them she has achieved a lot.

- Let me say that I consider your act a feat!
- This is not an act or a feat. This is an ordinary life. You just have to love.

The Irkutsk Center “ My Mamina School ” works with the parents of children with Down syndrome, providing them with psychological support and giving full information about what the Down syndrome is, how children develop with this syndrome, and what they can achieve. The center conduct developmental classes for children under six years of age, help to arrange children in kindergartens and schools. Now the center helps 40 families, and in 2016 with your support I would like to help 100 families. For these purposes, he needs to collect 1.6 million rubles. Let's help make a few dozen children and their parents happy.

The material uses links to publications of social networks Instagram and Facebook, as well as their names are mentioned. These web resources belong to Meta Platforms Inc. - It is recognized in Russia as an extremist organization and is prohibited.

The material uses links to publications of social networks Instagram and Facebook, as well as their names are mentioned. These web resources belong to Meta Platforms Inc. - It is recognized in Russia as an extremist organization and is prohibited.