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Why are people with Down syndrome called sunny? “Sunny children”: what parents need to know about their upbringing

Down syndrome is a disorder of a person's chromosome set in the direction of increasing the number of chromosomes. Scientifically speaking, in one of the chromosome pairs, instead of two chromosomes, for some reason there are three. This phenomenon is called trisomy. For many years, the life expectancy of people suffering from Down syndrome was quite short, because these people are often susceptible to heart disease and have reduced immunity. Recently, however, the life expectancy of people with trisomy has increased to fifty years. Statistics say that Down syndrome is present in approximately every thousand newborns, and this ratio is the same for all countries. And most importantly: trisomy is not a disease, it is a feature of the body, and therefore it cannot be cured, just as it is impossible to change the color of skin or hair.

What are they?

People with Down syndrome are not at all crazy or mentally retarded, they are not dangerous to society, and under the right conditions they develop normally, successfully integrate into society and lead full lives. The most successful examples include American, French and Spanish actors Chris Bourke, Pascal DuQuenne and Pablo Pineda, who not only brilliantly starred in the leading roles of several feature films, but also received various cinematic awards for their roles. By the way, Pineda became the first person in Europe with Down syndrome to receive a university education.

Love in Italian

Like throughout the world, for a long time in Italy there was a wary attitude towards people with Down syndrome. When it became possible to diagnose this feature in the fetus, many women, having received a positive test result, chose to terminate the pregnancy. So, in 2009, having learned about fetal trisomy, according to various sources, from 800 to 1300 Italian women went for a voluntary abortion. However, not all women do exactly this. No one knows exactly how many Downyats are born in Italy today; there are no official data. “Instructions for caring for people with Down syndrome” from the Research Institute of the Italian Ministry of Health voices approximate figures of 500 newborns annually. The vast majority of children with trisomy remain in the families of their parents, and a tiny percentage of those who refuse are adopted almost immediately.

Parents of children with Down syndrome unite, exchange experiences, and support each other. But most importantly, they can at any time count on the help of the state and social workers, whose activities are closely monitored by a very serious organization of national scale - the Italian Association of People with Down Syndrome.

Kindergarten

At the age of three, Italian children go to kindergarten. Many kindergartens operate programs to support children with developmental difficulties, primarily autistic and disabled children. Such children begin to go to kindergarten a year earlier, but not for the full day and only in the presence of one of their parents. This is how the kids get used to the new environment, and the rest of the kindergarten students learn to be friends with the kids. By the way, in many cities, schools organize friendly visits for primary school students to boarding schools where adult Downs live. So that in the future these children do not shy away from people with Down syndrome and pretend that they do not exist in nature.

First class with everyone

Primary school for children with trisomy does not start at six years old, but a little later. According to statistics, 51% of Downies go to first grade at the age of 7, 17% at the age of eight and 6% at the age of nine (the remaining 26% do not attend regular schools). Interestingly, only 22% of these children remain for a second year.

In middle school and high school, the intensity of study is higher, and therefore an additional teacher is required to be appointed, specially assigned to a child with Down syndrome. The emphasis is on ensuring that such a student learns in a class with other children, and not separately. However, according to statistics, in high school an additional teacher is required for all hours of study only in a third of cases.

What then?

Most parents try to delay the moment of parting with their grown-up children. This is completely wrong, he thinks Anna Contardi, social worker and coordinator of the Italian Association of People with Down Syndrome. This situation leads to the fact that people with Down syndrome are forced to go on an independent voyage when they are left completely alone. Parental love extremely rarely allows a son or daughter with Down syndrome to be sent to a boarding school, where, under supervision, they gradually learn to be independent. Graduates of boarding schools often live separately from their parents. So, the story of Marta and Mauro, the newlyweds, spread across the Internet. She is 30, she works at the reception in one of the hotels. He is 40, he is a clerk. In July 2014, after ten years of relationship and two years of marriage, they got married in one of the Roman temples and became a real family.

What do most people know about Down syndrome? That it is somehow connected with chromosomes, that babies with this syndrome are more often born to “older” mothers, and also that there are such “sunny children” who find it difficult to live in this world. On Down's Disease Day, some of the known facts are true and some are myths.

Syndrome or disease?

Normally, a person has 23 pairs of chromosomes, that is, there are 46 in total. But if the 21st chromosome is present not in a double, but in a triple version, then there are 47 chromosomes. This condition is trisomy on the 21st chromosome and leads to the development Down syndrome. By the way, the date for International Down Syndrome Day corresponds to the cause of the disease - 21.03.

In fact, the word “syndrome” is more correct to describe this condition, since in essence it is not a disease, but a set of certain symptoms. Some people have blue eyes, some have curly hair, and people with Down syndrome have their own specific characteristics given to them from birth.

Humans are not the only representatives of the animal kingdom who have trisomy 21. At a minimum, mice and monkeys are known to have a similar syndrome.

An additional chromosome, in a rough analogy, is like an extra gear squeezed into a well-oiled mechanism. An additional set of genes causes confusion in the processes of human development. As a result, people with Down syndrome acquire a number of characteristic external and internal features. For example:

a characteristic feature is mental retardation of varying degrees;
Hearing problems and visual impairments occur more often;
they are, on average, more likely to suffer from ear infections;
Skeletal disorders may develop due to distortion of bone growth;
Reduced muscle tone is often observed;
there are often problems with coordination of movement;
many of them suffer from obstructive sleep apnea, which is caused by the structural features of their facial part of the skull;
increased likelihood of developing heart defects.

Trisomy 21 is just one of the variants of various trisomies. For example, three copies of chromosome 18 lead to the development of Edwards syndrome, and trisomy of chromosome 13 manifests itself in the form of Patau syndrome.

Among the less common ailments that people with Down syndrome often suffer from are thyroid disease, anemia, gastrointestinal disorders, hip dislocation, etc.

And at the same time, babies with Down syndrome are often called “sunny children” - they are affectionate, friendly, easy to smile, and often have an ear for music. It is not yet possible to correct their “wrong” genome, but adapting such a person to ordinary life is quite possible.

Myth No. 1. Down syndrome is rare

Down syndrome has existed throughout human history. But previously, in the vast majority of cases, such people died in infancy or childhood. Humanity has also gone through shameful events in its history, when people with Down syndrome were sterilized (USA) and destroyed (Germany). Only towards the end of the last century did attitudes towards them change sufficiently for them to have the opportunity to become full members of society and live quite a long life.

Today, Down syndrome is detected in 1 in 1,100 newborns, although recently it was about one case in 650-700 births. This is due to the success of prenatal diagnosis, with 90% of women, having learned about the pathology, choosing abortion. So it turns out that trisomy on chromosome 21 is not a rare mutation at all.

Myth No. 2. A child with Down syndrome is born only to older women

Indeed, with age, the risk of a mutation that will lead to trisomy 21 increases. Moreover, starting from approximately the age of 38-39 years, the probability increases significantly: if a young girl 20-24 years old can conceive a child with Down syndrome in 1 case out of 1562, then at the age of over 45 the chances are estimated as 1 in 19. But this does not at all guarantee that a baby with such a diagnosis cannot be born to a 19-year-old young mother.

Moreover, since older women rarely give birth, statistics show that 80% of children with Down syndrome are born to women under 35 years of age. The average age of the mother is 28 years.

Myth No. 3. Down syndrome is an obstacle to learning.

Another misconception about “sunny people”. Indeed, mental retardation is one of the signs of this condition. But usually it ranges from mild to moderate. Experts estimate that people with Down syndrome have an IQ of 30 to 60, with higher scores also found.

The most important thing is that all people with Down syndrome are capable of learning. In the United States, the vast majority of children with this diagnosis attend regular schools and a number of specialized classes. Of course, they also have a tutor - a curator who helps the child learn and interact with the ordinary world.

Myth No. 4. People with the syndrome

Downs don't live long As mentioned above, in the past, children with Down syndrome actually didn't live to old age. Considering their numerous illnesses and inability to exist independently without prior training and adaptation to life in society, this is not surprising. But times have changed. Today, the life expectancy of people with Down syndrome is on average 50 years, but among them you can already meet 60- and 70-year-old people.

But here another problem arises: often (3-5 times more often than ordinary people) they experience early development of Alzheimer's disease. Moreover, deposits of beta-amyloid protein begin to form almost in childhood. In addition, studies have shown that the area of the cerebral cortex in ordinary people is larger than in those with Down syndrome. But with age, the latter's cortex becomes thicker, which also significantly increases the likelihood of developing Alzheimer's disease.

Myth No. 5. All people with Down syndrome are alike

Down syndrome is determined by a number of external characteristics that are similar in all its owners: short stature, flat face and flat bridge of the nose, epicanthus (vertical fold at the palpebral fissure), flat back of the head, shortened fingers (due to underdevelopment of individual phalanges), open mouth (due to for the structural features of the palate), dental growth disorders, etc. The characteristic shape of the eyes even at one time became the reason for the already outdated name of the disease “Mongolism”, and people with this syndrome were called Mongoloids. Mongolism was later officially replaced by Down syndrome.

In fact, the appearance features of people with trisomy 21 are no more pronounced than the characteristic features of people of a particular nationality. People with Down syndrome, in addition to the traits determined by the disease, like all other inhabitants of the planet, bear strong similarities with their parents. Each of them is individual and unique in their own way, just like any person on Earth.

Myth No. 6. People with Down syndrome are always happy.

It’s not for nothing that they are called “sunny” - they really smile often. But, like any other person, they also experience all other emotions - anger, happiness, sadness, etc. Moreover, people with Down syndrome suffer from depression more often than other citizens.

For reference

Every year about 2 thousand children with Down syndrome are born in Russia. In 85% of cases, they end up among the refuseniks and are sent to orphanages.
According to 2009 data, 250 people were on the waiting list to adopt a child with Down syndrome in the United States.
There are countries where the number of abandonments of such children is zero, for example, the Scandinavian states.

The birth of a special child always becomes a real test for parents, and this is completely natural. Every mother wants to have a healthy baby, but we cannot always influence our lives. Parents of children with Down syndrome, as well as children with other diseases, invariably ask the question: “Why do we need this?” This question will never be answered, because it cannot exist in principle. It is not known why the baby develops an extra chromosome. It happened, and no one is to blame for it. But in fact, the test for parents is not the birth of a sunny child itself, but the attitude of society towards special children. By the way, do you know why Downyats are called solar children? Because they are open to people and always smile. Having given such babies an extra chromosome, nature also gave them a heart created for love. Perhaps in order to teach love to other people too...

Birth of a child with Down syndrome

All parents of children with Down syndrome experience a real shock, even if they already knew in advance about the high probability of having a special child based on the screening results. Don’t be afraid to seek psychological help from professionals or communities of parents of sunny children. Don’t hide from the problem – it won’t go away, but the sooner you become familiar with the prospects for your child’s life and adaptation, and your rights to help from the state, the more confident you will feel.

It may take you quite a long time to adapt. This is also natural - after all, your life has changed dramatically. The most important thing is to be able to understand that neither you nor your baby is to blame for the fact that he has such a diagnosis.

It is quite possible that you will come under psychological pressure from loved ones who know nothing about the characteristics of down children, but who passionately want to tell you about the terrible prospects for their life and development. Do not give in to outside pressure: no one except the parents is responsible for the fate of the baby.

What if the family already has children? You need to tell them everything as early as possible, in a language they understand and understand. Explain that their newborn brother or sister is not like them, and there is nothing wrong with that. Children adapt much better in such a situation: their consciousness is not yet blinded by stereotypes that a mentally retarded person is a different caste. But because their parents are depressed, the children will definitely suffer, not understanding what happened. Therefore, the birth of a child with Down syndrome should under no circumstances become a tragedy for other children in the family. You will be surprised how responsive little ones will be when helping you care for your special needs child.

Development of children with Down syndrome

What should parents of a special child expect? First of all, you need to conduct a full examination of the baby’s health, since in some cases Down syndrome correlates with certain somatic diseases - congenital heart disease, hearing and vision impairment, problems with the thyroid gland. This is important because you need to know what exactly is causing the developmental delay: for example, hearing or vision impairment can make it difficult to carry out developmental activities.

The main feature of sunny babies is the preservation of their emotional sphere, as well as good ability to imitate, and it is these qualities that should be used as much as possible by parents and teachers to ensure the development of children with Down syndrome.

Such children's thinking is slow and their attention is scattered. However, mechanical memory will be more developed. Another distinctive feature of sunny children is their musicality. Therefore, so-called music therapy is recommended for early development - the development of general motor skills with musical accompaniment. Never exclude your baby from participating in games with other children - he will copy their behavior and repeat words, and this is very important.

A peculiarity of Down children is that they begin to sit, crawl and walk later than ordinary children, and also lag behind in the development of fine motor skills. That is why it is extremely important to start developmental activities and do special exercises in the first year of life. This will help minimize developmental delays.

To develop the speech of such children, parents need to learn to comment on their actions, and do it in simple language: “I wash the dishes,” “I eat bread.” The child will remember the actions and repeat their names. The books you read to your baby should contain bright illustrations - this will help concentrate the child’s attention.

Education for children with Down syndrome

This question worries all parents without exception. What awaits the sunny child in the future? Will he be able to learn, and how does this even happen? First of all, you need to remember that your child has every right to go to kindergarten and secondary school. It is integration into such an environment that is the most promising approach to teaching children with Down syndrome.

Children are taught in a regular class under special programs. It is possible to study in a correctional school. A very important point is additional developmental activities - music, physical education, modeling, and even theater clubs.

After school, young people with Down syndrome can receive primary vocational education and work. By the way, an amazing feature of Down children is that they are good at working on a computer. This can also be used during training. 5 out of 5 (7 votes)

“I love dogs”, “I like my job at McDonald’s”, “I like going to the cinema with my friend Kitty”, “I support Chelsea”, “I like James Bond”... ordinary opinions of ordinary people, not much different from you and me - with only one difference: all these people, captured in a special photo album by photographer R. Bailey, were born with one extra chromosome.

The nuclei of human cells contain 46 chromosomes - 23 pairs. Sometimes, during the process of meiosis - a special division leading to the formation of sex cells - one of the pairs does not separate, the result is an egg or sperm with not 23, but 24 chromosomes, and when it meets a cell of the opposite sex, the result is a zygote not with 46, but with 47 chromosomes. Why is this happening? No answer yet. But it is definitely not because people drink, smoke, take drugs or are in an area of radioactive contamination - such an anomaly occurs in about one embryo in 700 (children who are allowed to be born are slightly less - one in 1000). The only pattern noticed so far is that in women over 35 years of age the probability is slightly higher, but no one guarantees that this will not happen to a younger mother.

An extra chromosome causes a number of changes in the structure and functioning of the body. Some of them are visible to the naked eye: a flat face, a flat back of the head, an arched palate and decreased muscle tone, as a result of which the mouth may be slightly open, a shortened skull, an additional fold of skin on the palm, a short nose. One of the most noticeable signs is a fold of skin at the inner corner of the eye, which is somewhat reminiscent of the shape of the eyes of representatives of the Mongoloid race. Because of this symptom, the English doctor J.L. Down, who described this syndrome in 1862, called it “Mongolism.” This term - as well as “Mongolian idiocy” - was used until 1972, when, after many years of struggle, it was finally recognized that the pathology cannot be equated with racial characteristics, and the modern name - Down syndrome - was established.

This chromosomal anomaly is not limited to external signs - heart defects, strabismus, leukemia, hormonal disorders often go hand in hand with it, therefore, regular medical examinations by relevant specialists are mandatory. The immune system is quite weak, so a person can suffer from infectious diseases more often and more severely. Once upon a time, for these reasons, people with Down syndrome did not live long - but modern medicine allows them to live to at least 50 years. Unlike Down syndrome itself, all this is completely treatable. Sometimes Down syndrome is accompanied by hearing impairment - in this case, the help of an audiologist is necessary.

What frightens parents most is developmental delay. Such children begin to hold their heads only by three months, sit down by one year, and walk no earlier than two years. Such people lag behind both in mental development and in speech (the latter is explained not only by delayed mental development, but also by the special structure of the oral cavity and reduced muscle tone - so classes with a speech therapist are mandatory).

As for the mental retardation of people with Down syndrome, it is greatly exaggerated. A severe degree of it is observed only in a few, and in most cases we are talking about a moderate or mild degree of decline in intelligence. Of course, in this case, too, a severe form with a complete inability to adapt to independent life among people can be “organized” - for this it is necessary to separate the newborn from his parents and place him in a special closed institution... which is what they have been doing for many years, thereby supporting the myth of the absolute unteachability of children with Down syndrome and their inability to adapt socially.

Meanwhile, if such a child remains with his parents, if he is taught using special methods, then his development can proceed relatively successfully. Of course, he will not graduate from university (although such examples are known), but it is possible to develop the skills of self-service and life in society, just as such people are quite capable of mastering some professions.

People with Down syndrome are often called “sunshine children”, attributing to them increased smiling and constant presence in a good mood. This is not so - of course, mood swings are inherent in them just like all people, but they have some characteristic character traits: they are obedient, patient. What is absolutely not characteristic of them is aggressiveness.

What is the position of such people in society?

A. Hitler included people suffering from “Mongolism” in his T-4 eugenics program, also known as “Action – Death of Pity”. Many modern doctors fully agree with the Fuhrer in his fight for the purity of the human race: as soon as an examination of a pregnant woman reveals Down syndrome or such a diagnosis is made to an already born child, a massive psychological attack on the parents immediately begins - “Have an abortion / write a refusal, you are still young , give birth to another child – healthy, why do you need a disabled person,” etc. Often “good” relatives and friends get involved in the “processing” (a woman can also be intimidated by the fact that her husband will definitely leave her with such a child). It is not yet proposed to kill children who have already been born - but there are already “progressives” pushing the idea of the so-called. “postnatal abortion”... Not all parents can withstand such psychological pressure - many go for an abortion or abandon their children. As a result, children end up in orphanages where they do not receive proper development, thereby supporting the myth about the complete unteachability and social inadaptability of people with Down syndrome, which frightens new parents... such a vicious circle!

People who have visited Western countries notice that there both children and adults with Down syndrome can be found in stores, on the streets, and anywhere, while we don’t seem to have them - not because in the West Such people are more often born, but because they are not isolated from society there. Not every Western experience is worthy of imitation, but this is exactly what can and should be adopted. Moreover, children with mild mental retardation, with proper development, are quite capable of attending mass kindergartens and studying in regular schools.

Is it possible to introduce inclusive education for children with Down syndrome in Russia today? Perhaps not - and the point here is not only that not all teachers know how to work with them. Bring such a child to a regular kindergarten - not only will his peers begin to terrorize him, but his parents will also overwhelm the director, and there will be a LOT of angry appeals: “Why THIS is studying with our children!” However, this is not the only manifestation of an inadequate attitude towards people with disabilities in general, and towards people with Down syndrome in particular. How the parents of such children are tormented by the unhealthy interest shown by almost every acquaintance (even casual ones) - for some reason everyone is extremely interested in finding out “what is causing this,” “can it be cured,” “did you know about this before birth?” , and most importantly - “it was probably hard for you to find out about this?” Some also begin to express condolences... truly, encountering a disability - be it Down syndrome or something else - is a wonderful “test” of tact, politeness, and simply humanity.

There are children who are not like others - they were born special: with an extra chromosome or a worldview completely different from their usual one. Such children are in no way a grief, a death sentence or a punishment for their parents. They are called light or sunny because they smile more often than others. They are able to love and live life to the fullest, although they were born completely unsuited for this world. Parents of special children need to find a special approach and then they will follow a different, special path in their lives.

The statistics are inexorable - Down syndrome occurs in every 700th child in the world, and autism occurs in one in 88 children.

A mother who finds out that her child is not like others has a hard time deciding what to do next. Many people believe that they will have to give up their life if the baby is born with a genetic pathology. But star parents, who have the opportunity to declare their situation publicly, do everything possible to prove that a special child is a full-fledged member of society and deserves love.

The loudest statements about her “different” motherhood were made by actress and singer Evelina Bledans, who in 2012 gave birth to her second son, Semyon. While still in utero, the boy was diagnosed with Down syndrome and fused toes on his left foot, but mom and dad wanted him to be born, in any case.

“People are intimidated by prejudices, and therefore 85% of parents are afraid of additional difficulties in raising a child who is not like everyone else,” says Evelina.

She decided to destroy the existing stereotype that children with genetic disorders should be kept silent, and every day she proves to all parents that a child, no matter what he is, is a great happiness.

“This page was created for parents who are about to have or have already had such children. I started it with the goal of socializing people with Down syndrome. I wanted to explain that there is no need to be afraid of this diagnosis – such people need to be treated with loyalty.”

Evelina regularly writes about her son Semyon, his development, gives all sorts of recommendations, restores parents’ faith in themselves and gives them a positive attitude.

Among celebrities, Evelina is not the only one raising a special child. Lolita Milyavskaya also has a sunny daughter - at birth, Eva was diagnosed with Down syndrome, but later it was changed to autism - an innate psychological isolation. Lolita does not hide the fact that her child, until he was 4 years old, did not speak at all, had poor vision and had many health problems. However, the singer always praised her daughter, and maternal love worked a miracle - now Eva is 16 years old and she goes to school, where she practically does not differ in behavior and level of development from her peers.

The daughter of the famous director Fyodor Bondarchuk, Varvara, was also born with Down syndrome. The parents do not consider the girl sick, but call her special. They say the diagnosis only strengthened their family.

Composer Konstantin Meladze has three children from his first marriage. The youngest of them, Valery, suffers from a rare form of autism. The boy lives in his own special world and practically does not communicate with people. Yana, Valery’s mother and ex-wife of the musician, first spoke about her son’s illness after her divorce from Konstantin.

“Doctors diagnosed Valera with autism. Treatment of this disease in all countries of the world is very expensive, including Ukraine. No, this is not a sentence, this is an execution, after which you were left to live. This is a serious disease that has no cure yet, but it can be corrected. I'm talking about severe autism. Such children can be taught. I think parents who are faced with a similar problem are familiar with the feeling of fear, helplessness in the face of grief, and shame. Our society does not accept or recognize “others.” But when the child has his first successes, hope and faith awaken - and then a new starting point for genuine victories and bright pride in his child begins. Parents do not need to be ashamed or blame themselves. Don't think that you might have done something wrong. When you understand what responsible mission you are performing in your child’s life, you will realize the value or even pricelessness of your role.”

At the age of three, Sylvester Stallone's son was diagnosed with autism. Little Sergio had difficulty adapting to the world around him: he could not establish contact even with his loved ones, not to mention the rest of those around him. Sergio’s mother was actively involved with the child and even managed to open a research center for autistic children.

Now Sergio is 35 years old, he has never left his world - he lives quietly and alone. His father visits him, brings him medicine and is still indignant: “I have enough money and opportunities, but I can’t help him in any way.”

American singer Toni Braxton also faced the problem of autism in her child. She felt that something was wrong with her child when he was not yet a year old. The singer put a lot of effort into the boy’s development, and it was not in vain - he was able to go to school with ordinary children.

A similar fate has not escaped many celebrities, and they all say that genetic abnormalities are not a death sentence. As confirmation, here are the 10 most famous people with Down syndrome and autism who were able to achieve success in what they loved.

These people prove that everyone has a chance for a bright future, you just need to see it. And never give up, no matter how many chromosomes you have. Love for special, “sunny” children can work wonders. And I want to believe that in the near future “special” people who have achieved enormous success will appear in our country.

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badmama.com.ua

Sunny children. Truth and myths

Babies with Down syndrome are called “sunny” children. They are the ones who increase the percentage of kindness in our world. And such children are also called children of the eighth day. This name is explained by such a beautiful story: God created the world in six days, and on the seventh He rested. But on the eighth day, God created special children to test the hearts of all other people.

Truths and myths about children with Down syndrome

Myth: Down syndrome is a rare genetic disorder.

Truth: Down syndrome is by far the most common genetic disorder. Every year, about 5,000 children are born with Down syndrome, which is approximately one in 600 to 800 newborns.

Myth: Most children with Down syndrome are born to older parents.

Truth: As parents age, the likelihood of having a child with a similar syndrome actually increases, but younger mothers give birth more often, and therefore the birth statistics of children with Down syndrome are higher.

Myth: Children with Down syndrome have learning difficulties

Truth: In children with Down syndrome, IQ varies from 20 to 75 and directly depends on the special program and the volume of these activities. The intelligence level of these children is low, but despite this, they are very attentive, obedient and patient when learning.

Myth: Society treats people with Down syndrome as “outcasts”

Truth: Many other countries have developed special social programs for children with Down syndrome. And at the same time, they are allowed to live like ordinary people, they study in secondary schools and institutes, and they are not made outcasts.

Myth: An adult with Down syndrome is disabled

Truth: Most young people with Down syndrome finish school and then receive vocational training, which allows them to get a job.

Myth: A person with Down syndrome is unable to form close relationships leading to marriage.

Truth: People with Down syndrome are very sensitive and open to contact with others, so their likelihood of marriage is very high, and personal relationships of people with Down syndrome are very loving and supportive.

Yes, children with Down syndrome are a test for their parents, loved ones and themselves, but these children are born with love for us, with trust in the world... It’s not for nothing that a child born with Down syndrome is called “sunny”... So, what is he guilty of? Why does society close all opportunities for development to him, the happiness of being among people? Is this child missing something? No! Quite the contrary! He has something that others don't have - an extra chromosome that makes him special.

Achievements of people with Down syndrome

Pascal Duquesne, actor. In 1997 he received the main prize for performing the best male role at the Cannes Film Festival.

In Moscow there is the “Theater of the Simple-minded”, in which the majority of actors have Down syndrome.

Pablo Pineda. Became the first person with Down syndrome to receive higher education.

Andrey Vostrikov. A resident of Voronezh, who became the absolute European champion in artistic gymnastics.

Miguel Thomasin. Drummer of the Argentine band Reynols.

American Sajit Desai. Plays 6 instruments!

bibliomenedzer.blogspot.ru

Sunny children

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Sunny children

Every 700th baby in the world, according to statistics from the World Health Organization, is born with Down syndrome. This ratio is the same in different countries, climate zones and social strata. A genetic malfunction in a child occurs regardless of the lifestyle of his parents, their health, financial situation, habits and education. Society has formed a lot of prejudices associated with this disease. Diagnosis is often used as a derogatory slur. Due to the lack of reliable information, thousands of families are forced to fight for a decent future for their children, experiencing misunderstanding and hostility from others. “Open Asia Online” today, on International Children’s Day, will talk about Kazakhstanis who firmly believe that Down syndrome is not a death sentence.

TV presenter Marat Sadykov, well-known in Central Asia, has repeatedly talked on air about disabled children, but even in his worst nightmare he could not imagine that he himself would ever face this problem. However, when his wife gave birth to a son, the couple were informed that the child had Down syndrome.

This news came as a real shock, and during a sleepless night, when his thoughts were confused, the future father thought about leaving the baby in the maternity hospital. He admits that this was due to ignorance of the problem and complete uncertainty of how to live with it. And when I saw the newborn Damir, this thought seemed to disappear. He says it was very embarrassing, painful and insulting. The guy pulled himself together and helped his wife Alla cope with the shock. Marat and Alla dote on their Damir. His older sister Milana also loves the boy. The child is taken to the pool, where he happily splashes in the water with the same special children. And parents of children communicate in a specially created community on social networks. They say that they understood the main thing: they are not alone.

Arina Egorova is only 24 years old. She is raising her Masha alone after her husband left. I learned about my daughter’s diagnosis after birth, but I didn’t even think about giving up the child.

If such a child has already been born, there is no need to abandon him; on the contrary, you need to make every effort to ensure that he grows up in the family, Arina is sure. - Of course, this is hard to accept at first. This is a shock for the whole family and questions: why, why me? In fact, you need to think not “why”, but “why” was such a child born? So that we learn to love, so that we are more tolerant, so that we can enjoy the little things.

Alena Kim brought her one-year-old daughter Amina to the Kenes center, where the same special children are raised. The first positive changes in her behavior and mood were noticeable within a month, and six months later the girl learned to dance and eat independently, deftly using a spoon.

She began to repeat the movements when we dance,” Alena is proud. “We’re learning to eat, somehow she didn’t want to go home, but here, looking at the other kids, she started doing the same.” This is also imitation. “Kenes” means “advice” Center for disabled children “Kenes” is a place where parents meet, communicate and teach their special children. Down syndrome is often accompanied by concomitant diseases, and the earlier the child is treated, the greater the chance of overcoming these ailments.

For more than 20 years, this center has been led by Mayra Suleeva. In Kazakhstan, she is considered a leading specialist in working with children suffering from Down syndrome. Having raised her own children, she adopted a girl, Alina, who was given a disappointing diagnosis. She admits that she then decided: if she herself cannot raise a child with Down syndrome, then how will she help others? Myra is sure: many parents simply do not know that a diagnosis is not a death sentence at all. These children can achieve great heights, and such a child cannot be abandoned.

Trauma for a child, and it cannot be compared with anything at all, and, probably, no war can be as traumatic as the refusal of one’s own parents,” states Mayra Suleeva. - It is a misconception when they think that special children do not understand this. A child, while still in the womb, understands whether he is wanted or unwanted, and even more so understands when he is abandoned.

90% are refuseniks

The head doctor of the Children's Home, Latipa Kozhamkulova, shows little Ersain, who was put back on his feet through several operations. But in the maternity hospital, where his mother abandoned him, the doctors unanimously insisted that the child would not live. Little Maryam is also cared for here. Her father, having learned that the girl was disabled, blamed his wife for this and left the family. The mother could not raise her daughter alone and sent her to an orphanage. 5-year-old Maksat was also abandoned. The baby turned out to be smart: he learned to speak, draw and dance. The teachers call him their pride.

There are many similar examples, teachers say. In 9 cases out of 10, parents abandon children with Down syndrome. But if they knew that it was possible and necessary to fight, there would probably be fewer refusals. Our heroes have to work hard to support, raise and educate a sick child. But they are all sure that at one time they made the only right decision, leaving the baby in the family. And all this because they knew: they were not alone. Today, a fund has been created in Kazakhstan that unites parents of special children. By their example, such families prove that when you love, you can find a way out of any situation. The main thing is to feel that you are not alone.

All these stories formed the basis of one of the parts of the “Heroes Are Nearby” project. It was launched by the Internews organization in Central Asia. As part of the project, television companies from Kazakhstan, Tajikistan and Kyrgyzstan will present a series of portrait special reports telling about civil activists. You can watch a film about children with Down syndrome here.

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