Down syndrome did not prevent the Spaniard Pablo Pineda from getting higher education, and also become a film actor: he played main role in the feature film “Me Too” (2009).
Pablo Pineda is convincing proof that even Down syndrome is not a final death sentence for a person (like, probably, any illness or disability in general). A lot depends on the courage of the person himself, his willingness to fight for himself and his future, and also, of course, on the love and help of his loved ones.
What is Down syndrome
Down syndrome is a congenital genetic pathology in which a person has one extra chromosome: instead of 46, there are 47 of them in the chromosome set of a cell: one chromosome, namely the 21st, is represented by three copies instead of two.
This syndrome was first described by the English physician John Down in 1862, mistakenly classifying it as a form mental disorder. Signs of people with Down syndrome are a flat face with slanted eyes (this pathology was even called “Mongolism” for quite a long time), an open mouth, a small nose, a short wide neck, a flat back of the head, low muscle tone and etc.
At the beginning of the 20th century, with the advent of eugenics, people with Down syndrome began to be forcibly sterilized in many US states. The same thing was done first in Nazi Germany, and then they began to be completely destroyed with the aim of “purifying the Aryan race” as part of the killing program “T-4” (“Action Tiergartenstrasse 4”).
It is recognized that the birth of a child with Down syndrome (on average 1 in 700-800 births) may be influenced by the age of the mother. Very often such children are born to women over 35 years of age. Usually people with Down syndrome are called “children of the Sun” - for their peacefulness and kindness, the absence of any aggressiveness.
In Russia, about 2,000 children with Down syndrome are born every year, and 85% of them turn out to be superfluous in their family: their parents abandon them. In Europe and the United States, if prenatal diagnostics diagnose a child in the womb with Down syndrome, more than 90% of mothers have an abortion. Doctors have been sounding the alarm about this for a long time, but they have not yet been able to cope with the problem.
Pablo is the first
Meanwhile, it is a misconception to believe that such children are not teachable. They do have delays in intellectual and physical development of varying degrees of severity. These may be problems with speech and hearing, development of fine motor skills and communication skills. However, they can still develop: learn not only to walk and talk, but also to read and write, like other children, albeit with a delay.
A striking example of the learning ability of people with Down syndrome is the Spaniard Pablo Pineda, born in 1974 in the Spanish city of Malaga. He grew up in a family where, in addition to him, his two older brothers were raised. Pablo became the first person in Europe with Down syndrome who was able to receive higher education. He graduated in 1999 from the University of Malaga with a degree in educational psychology.
The boy first learned that he was different from everyone else from his teacher at the age of seven, when he was about to go to school. "I am stupid?" – Pablo asked him. “No,” his interlocutor shrugged. “Will I be able to go to school?” He answered in the affirmative, although at that time this was unusual. Today, 85% of Spanish children with Down syndrome go to general, non-specialized schools. At the same time, Pablo became one of the very first such children who studied in a regular school along with other children.
Pablo remembers the school with gratitude. In one of the interviews about his school years he said this: “School - best time. It was a wonderful, interesting, but also tough experience that enriched my life incredibly. It was especially difficult when I was a teenager.”
Fortunately for him, his parents cared very much about his development and did a lot with it. Pablo himself says this about this: “I grew up in a cultured family, with daily newspapers and a library, curiosity awoke in me very early... In general, such a child should be raised as a child, and not as a “disabled person”: he needs to be educated. Parents should talk to him, because the worst enemy of children with Down syndrome is silence... Parents should always be with them, they should show that this is their child. Children with Down syndrome do not need to be overprotected: they should constantly receive mental and physical stimulation and learn independently.”
Another secret to Pablo's success is hard work. For example, he said that he studies 6-7 hours a day. Pablo explained that for him this is in many ways a necessity: after all, people with Down syndrome need to study and learn educational material are harder than usual.
In his early youth, Pablo wanted to become a lawyer or journalist. However, in the end he chose the teaching profession at the university. For some time after graduation, Pineda worked in the municipality of Malaga. Now he is busy teaching at a school in the Spanish city of Cordoba.
At the 2009 San Sebastian International Film Festival, Pineda won the Best Actor award for Me Too, where he played a university teacher with Down syndrome. We can say that Pablo largely plays himself in the film.
We bring to your attention excerpts from one of the interviews with Pablo Pineda, where he talks about his life and how, in his opinion, society should treat people with Down syndrome.
Pablo Pineda: we should be seen as ordinary people
– What do you remember about school? Was it difficult to adapt?
– I remember my school period as quite useful for me. The difficulties I encountered were often caused by mistrust and fear on the part of senior teachers. They were full of prejudices, and it seemed to them self-evident that I would not cope with my studies. But I was lucky. Young teachers supported me. They approved of my stay at school and insisted that I stay.
WITH early childhood I always studied in government educational institutions. I must admit that my path was not paved with roses due to Down syndrome, and I had problems with integration.
– How do you fight for your integration? What's the hardest thing about this?
“From the very beginning until today, I have to constantly prove and show what I am capable of. It is very difficult, it is a very difficult struggle, the hardest in my life. I always have to go “one step ahead.” I have faced “no” hundreds of times, but I have learned to fight and achieve “yes.” Some things offended me. For example, I was told that my case was artificial, that it was a substitution, that I had a “mosaic” form of the syndrome (a variant of Down syndrome, in which only some, and not all, cells of the body contain the tripled 21st chromosome - ed.).
– In your opinion, are young Spaniards able to truly integrate a person with Down syndrome into society?
– I have many friends and I have wonderful memories of school. Children are more tolerant, more united. It was more difficult for me as a teenager. The guys at the institute were not so understanding... Well, oh well, in any case, the good outweighs. Everyone has their own experience. All sorts of things happened to me, but, in general, my student life was happy.
– How did you get involved in your work?
– ... I am a certified teacher in the field of special education in the field of “educational psychology.” I am the only person with Down syndrome who has managed to make a career. I consider myself lucky; I am not without work. I worked in the department for almost a year social security City Hall of Malaga, then in a project for socialization and involvement in professional activity people on the verge of marginalization... I really enjoy working.
– Do you understand that most people suffering from Down syndrome do not have the same opportunities for a self-sufficient life?
– I feel my exceptional position and I think that several circumstances contributed to this: firstly, I myself very clearly saw myself as such. Besides, my parents helped me as much as they could. They believed in my strength and always supported me. They decided once and for all for themselves that I was absolutely normal in everything and did not make any distinction between me and my brothers. Of course, it wasn’t easy for me.
– That is, you think that the parents are playing key role in the development of a person with Down syndrome?
– The most important, without a doubt. But, unfortunately, many parents who have a child with Down syndrome immediately lose hope, do not invest in him as they should, because they simply do not realize his capabilities. This is what makes me different from most guys with Down syndrome. At the same time, it is very important not to overload such children with care; they must be given the freedom to develop.
– Have you ever had moments when you wanted to give up everything, moments of complete loneliness?
– Yes, in the second year of my bachelor’s degree. That year everything was going against me. The teachers were full of prejudices, I suffered a lot from my classmates, they looked down on me, contemptuously... that was the situation. I didn't tell my parents anything. As a result, I endured everything and came to the conclusion that I was able to overcome everything on my own. In general, I moved on with my life. It's funny that in the worst moments of my life, I always meet someone who helps me and supports me. A guardian angel always appears to me.
– What is your goal for the near future?
– I have always believed and continue to believe that my goal is to fight for the liberation of society from prejudices and stereotypes. Our voice must be heard by society, we must be seen as ordinary people. To this day, I sometimes ask myself whether society really understands me. It seems to me that people with Down syndrome are not yet sufficiently understood and appreciated as individuals. There is a lack of awareness and often ignorance on this topic. In general, the road ahead is long, we will have to prove a lot.
– What advice do you have for a person with Down syndrome who is having difficulty coping with their condition?
– My advice is to never lose your presence of mind, feel strength and courage, accept yourself as anyone and love yourself. Do not be afraid under any circumstances, do not envy anyone and put aside your complexes! We must fight with all our might. Surely, you have some abilities, and they need to be cultivated. For example, I manage to write well and study well, but the bear stepped on my ear. Everyone decides for themselves what to develop.
– Can you remember a day that fills you with pride? The day when you felt that your efforts were not in vain?
– I can, and not just one such day. Once, when students in a professionally oriented course were being rewarded for their success, I was awarded a special prize. I was bursting with pride when I saw the packed assembly hall in front of me, heard applause and shouts of approval. These were truly indescribable feelings. Another time I was doing an internship at a school, and they gave me an incredible celebration, they prepared a bunch of surprises and poems in my honor. I still get goosebumps when I remember... We were all crying at the end!
Down syndrome is a common genetic abnormality. It is congenital and manifests itself in the presence of one extra chromosome. At the same time, the lifestyle of parents, the environmental situation, climate and other conditions do not affect this process in any way. And it’s no one’s fault for the appearance of an extra chromosome. Children with Down syndrome have a number of characteristics, as a result of which their development is slightly behind their peers, but practice shows that parental love and patience work real miracles and children learn to do everything that children without an extra chromosome can do.
Today people with Down syndrome are not excluded from society. They live the same life: study, work, act in commercials and films, and do charity work. They become real role models because they show that there is no need to despair and become despondent under any circumstances.
We invite you to learn the stories of 10 people with Down syndrome who proved that barriers do not exist. Perhaps, inspired by their example, you will stop blaming evil fate for your failures and will finally realize your most daring and ambitious plans!
Andrey Vostrikov
Andrey Vostrikov - six-time Special Champion olympic games. The young man is from Voronezh. He is a professional gymnast and serves as an example for young people. Andrey regularly visits international competitions and leads a very active and interesting life.
Pablo Pineda
Many people with Down syndrome find themselves in creativity. Pablo Pineda is no exception. Today he is a successful Spanish actor. In 2009, Pablo received the Silver Shell at the San Sebastian Film Festival for his role in the film Me Too, where he played a teacher with Down syndrome. Pablo lives in Malaga and works in the local municipality.
Sergey Makarov
Sergei Makarov is an actor with Down syndrome. He plays in the Theater of the Simple-minded. As a child, they didn’t want to take Sergei to school, but in 2004 the man became movie hero of the year at the international Stalker festival. He always purposefully walked towards his dream and never looked back on other people's opinions.
Maria Nefedova
Maria Nefedova lives in Moscow. Until recently, she was the only employed person with Down syndrome in Russia. Maria works at the Downside Up center. She is a teaching assistant and helps conduct group classes for children with Down syndrome. In her free time from work, the girl is busy in productions of the “Theater of the Innocent” and plays the flute.
Stephanie Gins
Stephanie Ginz is a famous actress. Down syndrome never stopped her from realizing herself in creativity. Even in her youth, Stephanie participated in theatrical productions and starred in commercials. At the beginning of her acting career, the girl starred in the film “Duo,” which received many awards. Stephanie is known to a wide audience for her role in American Horror Story.
Bogdan Kravchuk
Bogdan Kravchuk became the first person in Ukraine with Down syndrome to enter a higher education institution. Bogdan is very erudite: he knows English language, remembers by heart the capitals of almost all countries of the world and significant data from the history of Ukraine, owns a computer. Upon entering the university, the young man scored 160 out of 200 possible points.
Karen Gaffney
Karen Gaffney is a charming athlete with Down syndrome. Despite her left leg being paralyzed, Karen managed to swim across the English Channel and set a world record. She also became a Paralympic gold medalist. In her free time from sports, Karen is involved in charity work and runs a non-profit organization that helps children with disabilities.
Tim Harris
Tim Harris natural feature didn’t stop me from opening my own business. His restaurant “Tim’s Place” was recognized as the friendliest not only in the United States, but throughout the world. The restaurant's signature dish is Tim's Hugs. During the existence of his business, the young restaurateur managed to personally hug more than 60 thousand people.
Miguel Tomasin
Miguel Tomasin is a special person. He was born with Down syndrome, but at the same time he managed to achieve success in the musical field. He is often called the guru of experimental music. Miguel plays drums in his own band, regularly performs in schools and centers for sick children, and plays covers of songs by his favorite musicians.
Paula Sazh
Paula Sage was born in Scotland. The girl leads an active social and professional life. She works as a lawyer and provides legal support to two international organizations- AnnCap and Mancap. Paula also plays netball and sometimes appears in documentaries and feature films. For her role in the film After Life, she received a BAFTA Award in the Best Film Debut category.
People with Down syndrome differ from us only by one extra chromosome. Society should do everything so that they can feel comfortable in society, and not be prejudiced against them. They can study, work and open their own business!
The appearance in a family of a child with special needs - with developmental disabilities, disabilities or multiple disabilities - is a gloomy lottery of fate from which no one is immune. IN last years society turns to families with such children and is engaged in their social integration.
These processes are also taking place in Russia, although unevenly; in the fall of 2017, a certain lady on television reported that “special children” are born from “drunk conceptions,” which is both factually incorrect and offensive. In response, a flash mob #yanealkash began on social networks, in which mothers and fathers of children talked about their families. There are also many such families among celebrities. We invite you to read about them.
Evelina Bledans
Actress and TV presenter Evelina Bledans is raising her son Semyon with Down syndrome. Bledans became the first Russian celebrity to openly and proudly declare that she has “ sunny child" She participates in the work of a specialized charitable foundation, works with her son and talks a lot in interviews about how raising a special child is not a death sentence, but simply different living conditions. In 2017, Evelina Bledans divorced her husband, but this, according to her, did not affect the child in any way.Danko
Singer Danko is married to model Natalya Ustyumenko. The couple has two daughters, the youngest Agatha was born with cerebral palsy - cerebral palsy. Complications arose during childbirth. The consequence of this was a difficult diagnosis. The editors of uznayvse.ru clarify that Danko does not live with his family, but regularly visits his wife and children. Natalya devotes almost all her time to rehabilitation activities with her youngest daughter. 
Irina Khakamada
Irina Khakamada gave birth to her second child, daughter Masha, at the age of 42. As sometimes happens, she gave birth to a girl with Down syndrome. This was in 1997, so in the maternity hospital Khakamada was persuaded to give up the child. However, the conditions in Russian orphanages are such that the mother decided not to abandon the girl. IN adolescence Masha suffered from leukemia, but she was saved. In 2017, the girl turned 20 years old, she has a boyfriend - a young man with the same diagnosis. 
Anna Netrebko
His son Thiago opera diva Anna Netrebko gave birth in 2008 in Vienna. The boy's mother noticed something was wrong when he was three years old, when Thiago still did not begin to speak. Only then did doctors diagnose him with a mild form of ASD (autism spectrum disorder). Anna decided to find specialists abroad, and not in Russia, and took her son to New York - the field of therapy and integration of such children is well developed in the USA. 
Sergey Belogolovtsev
TV presenter Sergei Belogolovtsev's youngest son Zhenya was born significantly ahead of schedule and with heart disease. In addition, after the operation he developed cerebral palsy. For several years, the parents hid their son’s diagnosis from the press and public, but later they spoke about Zhenya’s characteristics. The young man himself graduated from a school for gifted children (with cerebral palsy, intelligence often remains intact) and hosts the TV show “Miscellaneous News” on one of the TV channels. 
Tatyana Yumasheva
The daughter of the first Russian President Boris Yeltsin, Tatyana, gave birth to a son, Gleb, in 1995. The boy was born with Down syndrome. For many years, the child’s characteristics were not reported to the press in order to divert unwanted attention from the family. However, the editors of the site note that Tatyana Yumasheva recently wrote about her son herself - she said that Gleb swims well, remembers and loves many pieces of music, and also plays chess well. 
Lolita Milyavskaya
Rumors about the characteristics of Lolita’s daughter, born in marriage to Alexander Tsekalo, began to circulate almost from the moment she was born. They wrote that she had Down syndrome and that the girl was autistic. Lolita Milyavskaya herself denied these speculations. According to the singer, Eva, born in 1999, was born very premature, and her features are connected precisely with this. At birth, the girl weighed a little more than one and a half kilos; she was barely able to get out. 
Konstantin Meladze
The son of producer Konstantin Meladze was born in 2005, and until recently the family hid that the boy was diagnosed with autistic disorder. The boy’s mother revealed the details of her difficult life with autism only after her divorce from her husband (Konstantin left Yana for singer Vera Brezhneva). According to her, parents should not repeat her mistakes and contact doctors as early as possible - if ASD is diagnosed in time, the opportunity to compensate for it is much higher (at the same time, we note that in Russia for a long time children under three years of age were not diagnosed with autism at all). 
Svetlana Bondarchuk
The daughter of Fyodor Bondarchuk and his wife Svetlana lives away from her parents in London. According to Svetlana Bondarchuk, she studies there and undergoes rehabilitation. British specialists working with special needs children are more comfortable than their domestic counterparts. The girl Varya was born in 2001 somewhat prematurely, which is related to the peculiarities of her development. 
Raising a child with special needs is not an easy task even for parents with “opportunities.” However, it also happens that quite ordinary children of stars do not stand the test of parental glory and go to great lengths. We invite you to read about the most unlucky children of Russian celebrities.
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It is still shrouded in myths and prejudices. Many are convinced that Down syndrome is a profound mental retardation or a rare disease that needs to be treated. That such children are born to alcoholics and drug addicts and will never appear to young and healthy parents. That people with Down syndrome are unteachable, aggressive, or, conversely, always happy with everything. That children with Down syndrome are better off growing up in specialized closed institutions and that they have no place among ordinary children...
Such myths can be listed for a long time. But is it necessary? After all, like all speculations, they arise only from a lack of information.
Data
Down syndrome is the most common genetic disorder. It cannot be “cured” and it cannot be “infected”, because it is not a disease. But people with Down syndrome often have reduced immunity and a number of concomitant diseases, and their life expectancy, on average, is shorter than that of others. Every 700th child in the world is born with Down syndrome. This ratio does not depend on the nationality of the parents, nor on their health, lifestyle or income.
Children with Down syndrome actually have a more difficult time developing than their normal peers. But with the support of their family and the help of specialists, they, like all kids in the world, can learn to walk and talk, read and write, draw and ride a bike, play music or sports, go to school. kindergarten or to school. They can also be friends, get carried away, fall in love, be happy and make others happy. Like any of us, each person with Down syndrome is unique. He has his own character, his own capabilities, his own interests. A person with Down syndrome can become a famous athlete, like Andrey Vostrikov And Maria Langovaya, actor, like Pablo Pineda And Sergey Makarov, an artist like Raymond Hu or a teaching assistant, like Maria Nefedova. Or simply someone’s – and yours too – child, friend, neighbor, acquaintance. And, of course, he is worthy of respect, if only for the fact that he daily overcomes difficulties unfamiliar to us.
Yesterday and today
Unfortunately, not everyone knows about this. Therefore, even today in Moscow, almost every second child with Down syndrome is abandoned by parents at birth. In other cities, the percentage of refusals ranges from 20 to 80. And just 15-16 years ago, only five percent of such children ended up in their own family!.. This is where another popular myth comes from: in Russia there are much fewer people with Down syndrome than in other countries. Not on the streets, not in transport, not in cafes, not in offices. While abroad, a person with health problems can easily turn out to be your postman, waiter, hotel administrator, child’s classmate or office colleague. With us long years people with Down syndrome had practically no opportunity to leave the system: maternity hospital - hospital - specialized children's home - - specialized institution for adults.
However, few lived to the end. After all, the orphan system destroys even the strongest and healthiest. What can we say about babies with reduced immunity and developmental features...
Those few who ended up in the family still found themselves isolated: they were not accepted into kindergartens and schools, other children were taken aside at playgrounds, looked askance on the street...
What has changed today? Much: kindergartens and schools have appeared that are ready to accept children with Down syndrome - both correctional and regular, inclusive. The media willingly started talking about Down syndrome and famous people, and parents of special needs children no longer hide the diagnosis from family and friends. There are more specialists - doctors, teachers, psychologists - who know the truth about the potential of children with Down syndrome. And most importantly, the Russian charitable foundation “Downside Up” has appeared, which has been promoting these changes for 16 years. Yes, a lot has changed. But not all. After all, in maternity hospitals it is still sometimes heard: “The child has Down syndrome. Write a refusal and you’ll give birth to a healthy one.” Although changes are taking place here too: last fall, Olga Golodets instructed the Ministry of Health to pay attention to such cases and recommended that doctors stop advising parents to abandon their children for health reasons. As before, people thoughtlessly use the word “down” as an insult, without fear of hurting someone’s feelings and without thinking that this is, in fact, the name of a doctor. As before, myths often replace facts. Cases of adoption of children with Down syndrome are still very rare in Russia... But in other countries, attitudes towards people with special needs have not changed overnight. It just happened several decades earlier than ours.
Make a step
Any journey, even the longest one, begins with a small step. If you are reading this article, it means you have already done it. And I'll tell you a story. One out of thousands. I think that after reading it, you will no longer laugh at a crude joke “about downs.” Or maybe you’ll take even more important steps—we’ll talk about them at the end of the article.
Nastya and Lesha. She was 19 years old, he was 23. A beautiful young couple. Unplanned but happy pregnancy. Excellent results of all tests and examinations. The long-awaited birth of a daughter. And silence.
“All the doctors suddenly fell silent. I saw that they were bending over her and didn’t understand what was happening,” Nastya recalls. Later, the pediatrician told Nastya that the newborn girl was suspected of having Down syndrome. A blood test is needed to confirm.
“But don’t be upset,” the doctor added cheerfully. “After all, there are defective toys - you can return them to the store.” The world shook and shrank to the size of a microscopic particle called a chromosome. 46 or 47 chromosomes? My whole life now depended on it.
Nastya waited a week for the test results. Each of these days will remain in her memory forever. Other mothers brought their children for feeding, but she didn’t: “Why do you need it? You’ll get used to it!..” Wherever she went: for procedures, in the corridor, she heard: “Refuse immediately, he’s a freak. Have you seen her diagnoses?! Young - you will give birth to others. Otherwise your husband will leave, your friends will all turn away, you will be left alone, and with such a burden.” Barely recovered from childbirth, unable to meet her family, she approached the children's room and peered into the tiny face. The doctors told her: “Look, it’s all written on her face!” And Nastya saw a small child - with pink cheeks, huge blue eyes and blond hair standing in a mohawk on the top of her head...
She already knew what it was - Dasha. After all, that’s the name they gave her back when she was in her stomach. Daughter Dashenka is the most beloved, the happiest...
There was a discharge department under the window of Nastya’s room. And every day she saw through the window how joyful mothers with children in their arms came out, how their relatives greeted them... Nastya could communicate with her family only by video phone. Just as shocked and confused as she was, they didn't know what to say. Everyone was waiting for the test results. Meanwhile, the doctors, it turns out, personally met with each of them in turn: with the husband, mother, mother-in-law. And, like Nastya, they were informed of dire predictions: “This is not a child, but a vegetable in the garden: he will never walk, will not speak, will not recognize any of you. And in general, he will die in your arms. Take him home and he will die.” A week later confirmation came - Dasha has Down syndrome. On the same day, without consulting Nastya, the family removed all the children's things from the house - a stroller, a crib, the first tiny clothes... And a little later, under constant pressure from doctors and in the presence of a lawyer, Nastya and Lesha wrote a waiver of the child. Each one separately, because they never had the opportunity to meet and talk with the whole family. The woman lawyer was very lively and cheerful: “Well, we found something to grieve about! Young, healthy, give birth to a dozen more and forget everything, like a bad dream.” Dasha’s parents met only when Nastya walked out of the doors of that same discharge department. One.
They told friends and acquaintances that the child had died. And we tried to live as before. “We managed to pretend to others, even to each other. But in front of myself... I was then ready to go to any job, do anything - just not to think...” Nastya still remembers her first visit to the orphanage. They drove along with Lyosha - and from the street they heard a child’s cry. For some reason, it immediately became clear that it was Dasha. She lay in the infectious disease ward and cried - her leg was stuck between the slats of the crib. She couldn’t get her out, and there was no one to help - there wasn’t enough staff for everyone... Then it was easier to come, we got used to it. It was more difficult to leave. “She lay there and looked at us. And we had to turn away from this look and leave...”
Love syndrome
One day Nastya realized that next time she simply couldn’t leave like that - without Dasha. The doctors said that it was possible to take the child home for the weekend. Then Nastya took a vacation and took her daughter for a whole month. “When we were dressing her, the nanny decided that we were dressing her for a walk, as usual. And when she suddenly realized that we were taking her home for a stay, she suddenly burst into tears: “Lord, I wish you, Dasha, would never come back here again!” The nanny did not know that her words would be prophetic. However, no one knew this then. And Lyosha was categorically against taking the child away, even temporarily. Visit, help in some way - yes, but don’t take on such responsibility. They even agreed that they would live separately for this month: Nastya and Dasha with their mother, and Lyosha with hers.
All month Nastya waited for other doctors’ predictions to begin to come true: when friends and relatives began to turn away, when they would point fingers at her daughter. But everything was different: the whole family immediately fell in love with Dasha, and her husband came every weekend and fussed with her. On the street, it was no longer Nastya looking longingly into other people’s strollers, but people looking at her in the stroller with the words: “Oh, what a miracle! So nice!” During this month, one-year-old Dasha, who upon arrival home could only lie down, learned to sit up on her own and walk by the hand, changed a lot... Meanwhile, the month was coming to an end. “Can you return her?” — Nastya’s mother once asked. Of course, Nastya couldn’t. But Lyosha could not change his decision. She persuaded him for a long time, citing a variety of arguments: “I just can’t give her away now. She needs to at least be supported, allowed to get stronger...” But then I realized that you cannot demand from a person what he cannot give. “An innate maternal instinct spoke within me, which Lesha could not have had. And I didn’t have time for arguments and insults: I had to raise a child.” Lyosha and Nastya officially divorced. Later, Lyosha will remember this - Dasha’s abandonment and divorce - as the biggest mistake in his life. However, he still continued to visit Nastya and her daughter and help them.
Dasha grew and developed. Nastya is already accustomed to the fact that even doctors, seeing her, are amazed: “And this is a child with Down syndrome?!” But we didn’t even know that this was possible, we were taught something completely different...” But still, the first place where she heard the words: “What a wonderful child you have!” there was a Center early development Downside Up Foundation. Nastya accidentally found out about it from other parents, came to classes with two-year-old Dasha - and realized that it had begun. new life. “It was there that I finally began to ‘let go’. And not only me, but also Lesha, because he also came with us. There we saw other parents, other children - both young and older - and were finally convinced that it was not scary. We saw what a huge amount of work was being done to help us - and we realized that we were not alone.”
Dasha recently turned 15 years old. Having completed her studies at Downside Up at the age of seven, she studies in a regular school, on the basis of which a specialized class has been created for children with special needs: they take some subjects together with everyone else, and Russian and mathematics follow an easier program. She has a big loving family: mom, dad, grandmother, great-grandmother, beloved little sister Anya.
At the invitation of the First Lady of Great Britain, Dasha went to London to light the lights on the Christmas tree, participated in photo shoots for the “Love Syndrome” calendar, and talked with journalists and celebrities. She is very polite and caring, it is easy and pleasant to be with her. Dasha finds a common language with everyone, but is especially tender towards children and elderly people, who respond to her in kind. Nastya thinks that Dashina future profession will be associated with caring for people. And it’s okay that so far in our country people with Down syndrome have practically no employment opportunities. This is the next step and one day we will definitely take it.
After all, if until recently the only officially employed person with Down syndrome in Russia was Maria Nefedova, an assistant teacher at Downside Up, now everyone has learned the story of Nikita Panichev, who works as an assistant cook in one of the Moscow coffee shops. And recently, a case of employment of a person with Down syndrome occurred in Omsk - a young man, 20-year-old Alexander Belov, began working as a cleaner to prove that special people can also be useful to society. Well, and at the same time save money for a course of dolphin therapy and new jeans.
And Nastya and Lyosha are still together. They began to live as a family soon after Dasha went to classes at Downside Up. And after some time they got married again. This time - getting married in church. Parents still come to their house and call them, faced with the same situation and not knowing what to do. Nastya and Lyosha firmly made it a rule not to convince or persuade anyone of anything. They only tell their story: only the facts, without hiding anything. Of course, Nastya has been asked the question more than once: “Have you ever regretted your decision to take the child?” You can probably ask it only without seeing them all together: Nastya, Lesha, Dasha, Anya...
But Nastya simply answers: “No, not once. The only thing I regret now is that I didn’t take her right away, that we didn’t live together for the first year. And then, as soon as I brought Dasha home, even though it was difficult and scary, it somehow immediately became clear: it was bad before, but now everything is fine.”
How to help special people?
Several ways to make March 21 a truly special day, and the life of special people - ordinary:
— give a lesson, a package of specialized literature or a home visit from a specialist to children with special needs>>
- wear an orange tie, scarf or neckerchief in support of people who are also called “sunny” - and tell others about this day.
- smile at a special person.
After all, people with special needs suffer most not because of their health conditions, but from the prejudices of others.
Hard statistics say that in 90 percent of cases, children with Down syndrome are killed in the womb through abortion. Even if a child is born, in 9 out of 10 cases the parents abandon him. But it’s completely in vain, because these are ordinary people, just with some (sometimes very significant) features in development. People with the syndrome have their own talents, and if they are developed, they can become successful, famous, and, with the help of their own work, not just self-sufficient, but even rich.
Strong people
Some famous people with Down syndrome are described and. Many people with this congenital disease have achieved success and worldwide fame. For example, actors with Down syndrome - Pablo Pineda, Paula Sazh, Stephanie Ginz, Pascal Duquenne, Max Lewis, Sergei Makarov, athletes - Karren Gaffney, Maria Langovaya, Andrei Vostrikov, restaurateurs - Tom Harris, Nikita Panichev, musicians and singers - Miguel Tomasin , Ronald Jackins, artists - Raymond Hu, Josie Webster, teacher Maria Nefedova. Many of those named have higher education, work as teachers, and achieved success thanks to their perseverance in life.
A person, even if he is sick, can achieve his dreams; his joy makes everyone around him happier. We need to help those who need help and each of us will feel more comfortable in our small world, where everything is interdependent.
In the state of Illinois, in the United States of America, Michael Jurgue Johnson paints. This versatile artist with Down syndrome paints people, animals, and many landscape works. The style of execution is special, but the paintings are quite realistic, he not only paints at will, but also receives many orders for certain paintings.
Michael has websites that feature his work. He also shows on his Internet resources the works of other artists who have the same disease. Mike periodically organizes exhibitions of his work.
An interesting guy, Bogdan Kravchuk, lives in the Ukrainian regional center of Lutsk. He became famous after becoming the first Ukrainian student to have a gene abnormality. Despite the fact that he has Down syndrome, he is interested in history and geography, knows the capitals of all European countries, as well as the dates of the most important historical events in Ukraine.
From the first grades Bogdan was interested in books, textbooks, geographical maps. The child’s grandfather, Vasily Kravchuk, worked with the child and helped him develop photographic memory and imagination, which helped the child in learning. Many things are difficult for Bogdan - he doesn’t count well, he can’t tie his shoelaces. But most of his ordinary peers can envy his success - he knows by heart a huge number of poems by Kotlyarevsky, Shevchenko, Lesya Ukrainka.
The child began to walk late - after two years. He also didn’t speak for a long time, but his mother started teaching him to read early and the baby suddenly began to talk. There were no special techniques, the training was ordinary, but my mother needed a lot of patience. The boy went to first grade rehabilitation center, he really liked geography, literature, history, his interests coincided with his grandfather’s and he enjoyed studying with his grandson. He was also helped by history teacher Larisa Bondaruk, whose classes became Bogdan’s favorite.
Having finished school well, he entered the Eastern European National University in Lutsk. There were problems with admission; they did not want to issue a medical certificate, since according to the law of 1967, children with special needs of genetic development cannot enter a university. However, in 2006, a decree was issued in Ukraine according to which such children can study in a correspondence department, and Bogdan chose this form of education. A history teacher helped me get a doctor’s certificate. By the way, upon admission I took tests on a general basis - the tests included three subjects - Ukrainian language, world history, History of Ukraine. After graduating from university, Bogdan plans to work in a historical archive; he enjoys studying ancient documents.
Artist Maryam Alekberli
Azerbaijani artist Maryam Alekberi is known all over the world; she paints in an interesting, rather realistic style, which is compared to the style of Paul Gauguin and Henri Matthys. Exhibitions are held in many countries, the most famous being a personal exhibition at the Louvre in 2015. The girl is not only well-developed intellectually, but also quite beautiful, you can’t even tell that she has Down syndrome.
The girl was born in 1991 in the capital of Azerbaijan, Baku. She studied at a school for ordinary children, and after graduating from school she additionally underwent training in Baku and Moscow educational institutions. Since childhood, she loved to draw, showing her imagination, her mother helped the girl develop her talent, and at the age of 19, she had her first significant exhibition at the “Garden of Art” museum in Baku.