"I'm a happy man!": The Story of a Smolensk Family

This year, the social and educational project of the radio station “Viasna” called “World without Borders” received large-scale support from the Ministry of Digital Development, Communications and Mass Media of the Russian Federation. This recognition allowed us to take the dialogue on inclusion to a new level, combining modern broadcasting technologies with acute social issues. As part of the series, leading experts in the field of accessible environment, representatives of specialized NGOs, and most importantly, families raising children with disabilities come to the studio. We are not talking about dry statistics or formal benefits. We are talking about life: how stereotypes are broken, how household barriers are overcome, and how true, undiagnosed love is born. We will tell the story of one of these families. This is an honest, sometimes heavy, but full of light and incredible inner strength story of Elena Polukarova and her son Andrei Samuilovich.

“God gave you to get pregnant – this does not mean that you will give birth” – this phrase of one of the doctors still rings in Elena’s memory as a slap in the face. Pregnancy was difficult, almost the entire period - on preservation. But the most terrible day was when the child asked for this world. Later, Elena whispered to tell: in intensive care, the question was decided who to save - the mother or the child.

- The head doctor saved us. And me and Andrea. He connected all the connections, got some medicines – Elena’s voice in the studio of radio “Spring” sounds smooth, but behind this flatness you can feel steel. The moment was very difficult because I didn’t see the child, I didn’t know what was wrong with him. I even had a tantrum. A psychologist came to see me. She said, “You are a very strong woman.”.

But Elena only felt strong when she was allowed to enter the room.

- When I saw Andrew, when I took him by the hand, it was to tears. I knew it was mine. Alive.

The diagnosis of cerebral palsy was not made immediately. At first there was the word "to grow." They were discharged only when the boy gained the cherished 2.5 kilograms.

- A doctor showed me how to do a massage. And she's the only one who's told me that most of these kids have cerebral palsy. He added, “Fight for him,” recalls Elena.

A year and a half of continuous work began. Every month, exercise therapy. Massages every month.

- Before tears there was a moment when Andrew, sitting on the crib, began to climb it. And so he suffered for a long time, but when he got up, he had such a face - a winner! I can't tell you that. The child achieved his goal. He was nine months old at the time. But he decided he had to get up. And from that moment on, he started running everywhere, holding on to handrails.

And then there was a day at the store. Andrey's a year and a half. He always walked with a dead grip on his mother's arm. Elena turned for a second to the shelf, and when she raised her eyes, her son was not there. She saw him in the distance: he, staggering, but rearranging his legs on his own, walked to some plush dog lying on the floor.

- I kept waiting for "when, when," and then he took it and went. It was also to tears, because I was standing there afraid to breathe, so as not to scare.

We had a baby!

But the world outside their apartment was inhospitable. When it came time to give Andrei to kindergarten, Elena faced the first wall – human callousness.

- There was no such thing as a disabled child growing up at home. We had a baby in our family. We did not treat him differently, she said. And in kindergarten we gave an ordinary child. Well, we weren't well received there.

Andrey went to the garden according to the scheme “three days walks, two weeks sick”.

- He didn’t want to go, he felt that he was being treated very negatively – Elena pauses, choosing words. And we finally made the decision that we were taking the kid out of kindergarten, so Dad sat down to study with him. I am grateful to my husband, because as much as he put into the child. Few people are even capable of that.

School was the next frontier. At the age of six, Andrei went to training, but it quickly became clear: motor skills fail, the tempo of writing does not keep up with the thought.

- I went to the director of Gymnasium No. 4, Leonid Trofimovich Dugue. And we talked for a very long time, and he said to me, "Well, you don't need to join the army, give him back from the age of eight.".

They spent six months following the Montessori method. Andrey came to the first grade, already able to read, write and count. But school is not just about knowledge. It's social.

- I don’t talk to my classmates very much, I talk more with older kids. As such, I have no friendship. Just communication, – calmly, without tears says Andrei himself, sitting next to his mother in a radio studio.

His studies are hard. Mathematics, physics, Russian – all this requires tremendous stress.

- When we went to school, we were told that Andrei needed extra time to write, explains Elena. - As a result... Yeah, it feels like he's not making it. Even from notebooks, if you look at: homework is written in very beautiful handwriting, and in school - like a chicken paw. But he's trying.

OGE became a personal battleground for the family. Elena remembers those days with trembling:

- I was really worried about math. I thought at least he had a passing eight. Most of all, I was afraid that the example itself would be correctly solved, and the answer would be incorrect due to inattention. Well, he's good, he's done a lot. We got a solid three, even there two points were not enough to four. This is a very good result for us because mathematics is not ours.

Boxing and piano

But if Andrew is not good at numbers, he takes others. At seventeen, he plays the piano.

- A few years ago, he decided to go to music school. For a vocal course. They said, “We’ll have to play the instrument.” I said, "He can't do it." Our motor skills are bad, Elena laughs. “He will succeed,” said the teacher. And taught him to play the piano. I know he doesn’t go too fast, he plays slowly, but for us it’s fantastic!

Andrei reads poetry. In a deep, velvet voice that doesn’t match his shy smile, we congratulate all the lovely women on this day. For all of you, let the sun shine, let a ringing drop play

- He really wanted to be a doctor. The series "Ambulance" with Gosha Kutsenko his move to this, - with tenderness says the mother. - But his chemistry didn't work. He transferred to a humanitarian class.

Andrew’s life is an endless struggle with gravity. Not metaphorical, but real.

- Children with cerebral palsy need sports every day. There are no other options, – hard, accounting cuts Elena. From the first day we had massages, exercise therapy. Then we started going to the Cherries. There he was wearing an Adele suit, he was all over rubber bands. That is, when he walks, the muscles make him walk, move.

From an early age, Elena forced her son to walk to the fifth floor.

- He's like, "Mom, I don't want to, I'm tired." And I say I can't help him; he has to go on his own!

The family bought his son a bicycle. First, a three-wheeled one with a handle, where Elena herself “pedals” while her son’s legs simply stood on them. Then there's a two-wheeler with side wheels. And then Dad said, "Let's try driving without wheels." Three months of bruising, knocked knees and tears. But Andrew now rides a two-wheeled bicycle.

- I went my way: classes, exercises. We have a bicycle at home, and it spins the bike at home. The main thing is to work: every day to make the muscles work.

When Elena brought her son to boxing, the doctor at the dispensary looked at her as if she was crazy. "Mommy, are you okay?" Boxing

- I knew he wouldn’t box with anyone, there wouldn’t be any sparring, she explains. But the coach I gave Andrew to is disabled. He teaches at a sports school. And he taught his son to stand on his feet. Andrey can box, so he can feel his body.

Thanks to love

Elena remembers with sadness the years when every look of a passer-by at his son echoed in his heart. Now she is trying very hard to react calmly.

Andrew sees the world differently.

- Thanks to the support of the family, her love for me, I feel like a happy person and I realize that... I don’t need anything, I almost achieved everything. All that remains is to choose a profession.

Elena strokes her son's hand. There's no tragedy in her eyes. They have great fatigue and endless, ringing pride.

- You can't lose your willpower, your spirit. You need to love yourself, your child, perceive him as he is, believe that you will succeed. And that is the most important thing, she says.

Andrew nods, agreeing:

- Do not give up, understand that every problem can be solved. We need to find a way to solve this problem and strive for it.