Socialization is one of the key points that allows society to accept families with special children
PHOTO: Irina KhlebnikovaOn March 21, the world annually celebrates World Down Syndrome Day. This genetic disease can be caused by the appearance of an additional 47th chromosome in the genetic code; the cause can also be the splitting of the 46th chromosome at the very beginning of fetal formation.
Who are the “sun children”?
“Sunny children,” as children with Down syndrome are also called, have problems with hearing and vision, height and weight, skin and immunity. Diseases can haunt them from birth - not every such person lives to old age. But the disease does not prevent many from successfully socializing in society, loving and being creative.
Specialists from the Federal State Budgetary Institution “Medical Genetic Research Center” told RIA Novosti about factors that can provoke the birth of a child with Down syndrome. The main reason for genetics was the woman’s age, categorically refuting earlier arguments that the economic and social status of parents can affect the appearance of a “special” child.
Advice for expectant mothers
What else can trigger Down syndrome? A VM correspondent asked this question to an expert - senior nurse of one of the Moscow clinics Anna Knyazeva.
To avoid harming the fetus during pregnancy, there are many recommendations. And the most common ones have already been mentioned more than once: do not smoke, do not drink, avoid physical activity, do without antibiotics and other medications that can affect the development of the fetus. Rubella can have dangerous consequences; the mother should also be wary of toxoplasmosis, which can be contracted from animals.
The test, which will help determine the likelihood of having a baby with Down syndrome, is usually carried out at 11–12 weeks of pregnancy. Ultrasound, hormone tests and a program that will calculate the likelihood of having children.
Anna Knyazeva has experience working with “sunny children”.
No one will answer you how to communicate with them. Everything is very individual. You can build a behavior model only when faced with a problem. Establishing contact is the same as with ordinary children, but the “sunny child” is usually less sociable because he almost does not perceive human speech.
How to adapt a special child to society?
Adaptation of a child with Down syndrome is a global issue, and it is difficult to give universal recipes, says Ekaterina Aleksandrovna Ponomareva - educational psychologist, deputy director of the Educational Center of the non-profit organization "Downside Up Charitable Foundation". - There is no magic wand yet to solve it...
The main stage of a child’s socialization, she is sure, occurs at school. But how to prepare such a baby for it?
According to the law, both kindergartens and schools must accept any children, the expert notes. - But many local regulations allow this law to be circumvented. For example, a family has just moved to Moscow, and the school may not be ready to accept a special child, because he is not adapted to living in a group, and the teachers do not know how to approach him.
Here there must be a mutual movement towards each other: both society - towards the child, and the child - towards society.
Let’s say that twenty years ago parents hid their special children,” says the expert. - We went out for walks with them only at night, so that no one would see them. Fortunately, today a lot has changed: society has begun to treat such children more tolerantly. But all the same, both society and special children themselves need to be prepared for the fact that they will need to live among people: teach them how to behave, how to explain themselves, even if it is difficult for them to speak.
Ekaterina Ponomareva also notes that families with a child with Down syndrome are greatly helped by charitable foundations and organizations.
It's not enough to work only with the child, she says. - You may not succeed, because both your mother and the whole family need support. For them it is a great grief and stress. And most of the work falls not on the shoulders of specialists and teachers, but on the shoulders of loved ones: getting to know the rules and norms of behavior, and learning to communicate and self-care... Without teaching the family what to do and how to communicate with the “sunny child” , the work will not be successful.
Separately, the expert notes that parents in any case must take into account all the risks.
There are families who, no matter what, do not want to terminate the pregnancy; they want this child and are ready to love and raise him. They believe in fate: it just happened, it happened, and we will raise this child... So the task of the foundations is to help such families: make an appointment with a psychologist, provide all the necessary information about the symptom, introduce them to special children and communicate with them , and then make your own decision. The funds support the family in any decision it makes, notes the educational psychologist.
There are some families who, no matter what, do not want to terminate the pregnancy, they want this child and are ready to love and raise him
PHOTO: Irina Khlebnikova, “Evening Moscow”
The most important advice
It is important to find a specialized center where they will help both the mother and her loved ones. They will suggest a psychologist who will teach you how to overcome the first, most difficult stage, advises Ekaterina Ponomareva.
According to the specialist, very often parents of special children teach them to read, count, and develop fine motor skills, but you need to pay attention to socialization and to making them, if possible, independent.
We saw children abroad who, perhaps, had difficulty calculating something, but they were well versed in everyday matters and behaved wonderfully. After all, you won’t want to communicate even with an ordinary person if he is not well-mannered. Some parents of special children do not care at all about raising their child, but they like to reproach society for not loving them.
A place in society for “sunny children”
The possibility of realizing a special child in modern society is a separate issue that Ekaterina Ponomareva focused on. She said that among them there are many talented people who simply see the world around them differently.
Everything is very individual. Looking at a child, you cannot immediately tell whether he has abilities. But if there are difficulties, for example, with speech, then other ways of expression are sure to open up, notes the educational psychologist. - But, unfortunately, there are few places where they are willing to hire such a person. After all, he will need special conditions and, possibly, accompaniment at first, and it is possible that he will continue to do so. Few people in organizations are ready to do this, but creative studios are not constrained by such “restrictions.”
We can only hope that in the near future conditions for special children will become better. And society will come out to meet them.
In Russia, there are a huge number of myths and prejudices around people with Down syndrome. Many believe that this is a rare disease that requires long and difficult treatment, others are sure that such people can be labeled as “good for nothing,” others are sure that profound mental retardation makes people with the syndrome practical “vegetables,” and not people, fourth - that such children are born only to drug addicts and alcoholics... On March 21, the world celebrates International Down Syndrome Day - a date designed to remind about this problem, as well as teach healthy people to treat people with developmental disabilities with respect and understanding. Moreover, people with Down syndrome, with proper care and development, are able to support themselves independently, get married and have children, drive a car, build a career, do housework, among them there are successful actors, musicians, composers, restaurateurs... About what is Down syndrome, as well as what these special sunny people can achieve, we will talk today.What is Down syndrome
Down syndrome is one of the most common genetic pathologies. A pathology that cannot be treated, but is also not transmitted: it’s all about the number of chromosomes - instead of the usual 46, people with this syndrome have 47: there are 3 copies of the 21st chromosome. By the way, this is why Down Syndrome Day began to be celebrated on March 21 - the 21st day of the 3rd month.
Contrary to popular belief, people with Down syndrome are not the offspring of alcoholics or drug addicts. A child with such a deviation can be born to absolutely anyone, even the healthiest couple. Presumably, the occurrence of this kind of pathology is influenced (the older you are, the higher the probability), but the appearance of many such children born even to very young mothers suggests that the mature age of the mother is far from the reason (or not the only reason) for the birth of a child with this syndrome.
People with Down syndrome are born all over the world, in all nations. According to statistics, every 700th child in the world is born with this syndrome. And even though their mental abilities are, as a rule, a little limited, there has already been a tradition of calling them “sunny people”, and Down syndrome - Love syndrome: these are very friendly, and when they smile it is impossible not to smile back.
What makes people with Down syndrome different? First of all, the appearance - a flat face, the bridge of the nose and the back of the head (short skull), an enlarged tongue, the presence of an additional fold above the eye... There are other external signs. In general, we can say that people with Down syndrome are more susceptible to various diseases than others due to, and their life expectancy is on average shorter than that of healthy people.
The most famous people with Down syndrome
Not long ago, the world was stunned by the news: 29-year-old American actress Jamie Brewer, who suffers from Down syndrome, will become the first person in the world with such a diagnosis to appear on the fashion catwalk. This event will take place at Fashion Week in New York this fall. The girl, who gained fame after filming the series “American Horror Story,” expressed hope that her example will encourage and inspire young people with Down syndrome to realize themselves.
At the 2011 Games in Athens, athlete Maria Langovaya became a member of the special Olympic team. The girl won a gold medal in freestyle swimming at the competition. Maria had already received “silver” before.
34-year-old Karen Gaffney became the first person with Down syndrome to swim across the English Channel (and this with a completely paralyzed left leg), after which the woman was able to set several other records, and also took gold in the swim at the Paralympic Games. Karen is an honorary doctorate from the University of Portland in Oregon, and she also runs a charity that helps children with mental and physical developmental disabilities.
35-year-old Scottish actress Paula Sage has already won a BAFTA Award for Best Film Debut, and has also become a sought-after lawyer - in particular, she provides legal assistance to two large international foundations.
Restaurateur Tim Harris founded the "world's friendliest restaurant." So, his brainchild, Tim’s Place, in addition to a delicious menu, offers all visitors... Tim’s hugs. The restaurant was opened only 5 years ago, but during this time Tim has already welcomed 22,000 people!
Miguel Tomasin is the drummer and founder of the band Reynols. He has long been assigned the title of “guru of experimental music.” In addition to his creative work in the group, Miguel also performs solo, performing his songs and cover versions of songs by famous rock musicians for sick children.
Sometimes people with Down syndrome are realized not even in one, but in several areas at once. This is exactly what can be said about the last one we want to introduce. Spaniard Pablo Pineda is a successful actor (in 2009 he received the Silver Shell Award for Best Actor in the film “Me Too”), teacher and municipal employee. Additionally, Pineda holds several educational degrees: Educational Psychology, Teaching, and Bachelor of Arts.
I really want that after meeting people with today, we will never be able to use the word “down” in a derogatory sense, and on the street we will not turn away and whisper behind the backs of disabled people passing by (with this or other health problems): they are like that the same as us.
When the desired pregnancy finally occurs, it is a real holiday. After waiting for two lines on the test, future parents feel inspired and happy, but over time they also feel certain fears. In particular, one of them is feelings about
Many future parents often ask the question of why children with Down syndrome may be born? And are there ways to prevent this pathology?
Let's figure out who these “sunny” children are.
Congenital syndrome
First of all, it is necessary to understand that any congenital syndrome, including Down syndrome, is not a disease, and therefore its treatment is impossible. A syndrome is understood as the total number of a number of symptoms that are caused by various pathological changes in the body. A large number of congenital syndromes are hereditary, but Down syndrome stands out from this list, being an exception. It got its name thanks to the doctor who first described it in 1866 (John Langdon Down). How many chromosomes does Down have? More on this below.
What caused it?
This syndrome is caused by the tripling of the twenty-first chromosome. A person normally has twenty-three pairs of chromosomes, but in some cases a malfunction occurs, and instead of the twenty-first pair, three chromosomes appear. It is this same one, that is, the forty-seventh, that is the cause of this pathology. This fact was established only in 1959 by the scientist Jerome Lejeune.
People with Down syndrome are called “sun children.” Many people are interested in who they are. The genetic abnormality of having an extra chromosome sets them apart from others. It is not without reason that the term “sunny” is assigned to such children, since they are characterized by a special cheerfulness, they are very affectionate and at the same time obedient. But at the same time, they experience mental and physical developmental delays to a certain extent. Their IQ level ranges from twenty to seventy-four points, while most healthy adults have from ninety to one hundred and ten. Why are healthy parents born?
Causes of birth of children with Down syndrome
In the world, for every seven hundred to eight hundred children, there is one child with Down syndrome. Babies with this diagnosis are often abandoned in the maternity hospital; worldwide the number of such “refusers” is eighty-five percent. It is worth noting that in some countries it is not customary to abandon mentally retarded children, including those with Down syndrome. Thus, in Scandinavia, in principle, there are no such statistics, and in Europe and the USA they refuse only five percent. It is interesting that in these countries there is generally a practice of adopting “sunny” children. For example, in America, two hundred and fifty families are waiting in line to receive babies with Down syndrome.
We have already determined that “sunny” children (we explained who they are) have an extra chromosome. However, when is it formed? This anomaly appears mainly in the egg when it is located in the ovary. Due to some factors, its chromosomes do not diverge, and when this egg subsequently merges with a sperm, an “incorrect” zygote is formed, and then an embryo and fetus develop from it.
This can also happen due to genetic reasons, if all eggs/sperm or a certain number of them contain an extra chromosome from birth.
If we are talking about healthy people, then, for example, in the UK, one of the factors influencing a genetic error is considered to be the aging of the egg, which occurs along with the woman’s age. That is why special methods are being developed to promote egg rejuvenation.
Characteristics of “sunny” children
In terms of appearance, children with Down syndrome have the following characteristics:
- slanted eyes;
- wide and flat tongue;
- wide lips;
- rounded head shape;
- narrow forehead;
- earlobe fused;
- slightly shortened little finger;
- wider and shorter feet and hands compared to ordinary children.
How many years do people with Down syndrome live? Life expectancy is directly dependent on the severity of the syndrome and social conditions. If a person does not have heart disease, severe diseases of the gastrointestinal tract, or immunity disorders, then he can live up to 65 years.
Amazing character
"Sunny" children have an amazing and unique character. From a very early age they are distinguished by activity, restlessness, mischief and extraordinary love of love. They are always very cheerful, it is difficult to focus their attention on specific things. However, there are no complaints about their sleep or appetite. Parents may complain about something else: it is quite difficult to cope with such a child at a party or on the street due to his activity and constant demand for attention to himself; he is very noisy and restless. It is difficult to explain anything to a baby with trisomy 21. Habitual methods of upbringing are ineffective for such children; you cannot scold them, because a reverse reaction will follow: either they withdraw into themselves, or their behavior becomes even worse.
Can handle it
However, you can cope with any situation. With such a child, the most important thing is to be able to choose an approach to him. Irresistible energy and mischief must be spent and used in the right way. This requires playing outdoor games as much as possible, being outside more often so that the child can run around more. There is no need to control him too much, prohibit many things or find fault with little things. One day, the young child’s energy will decrease a little, he will begin to listen to his parents more and begin to play educational, calm games.
If the necessary efforts are made, then “sunny” children can even go to a simple kindergarten and school, having previously prepared in a specially designed correctional school. Some even receive vocational education. Perhaps the most important thing is to give them a sufficient amount of warmth, love, affection and care in childhood. They are very loving and strongly attached to their parents. Without this they will not be able to survive in the literal sense of the word. How many chromosomes does Down have are described above.
Who can have “sunny” children?
Scientists still cannot find the reasons that provoke a failure in genetics and cause the development of Down syndrome. It is believed that this occurs due to absolute randomness. A child with such a syndrome can be born regardless of the lifestyle his parents lead, although many people are often convinced that such a pathology is the result of unacceptable behavior of the mother during pregnancy. In reality, everything is different.
The likelihood of having a child with Down syndrome does not decrease even in a family whose members adhere to the principles of an exclusively healthy lifestyle. That is why the only answer to the question of why such children are born to normal parents is this: an accidental genetic failure occurred. Neither the mother nor the father is to blame for the appearance of this pathology. Now we know why children with Down syndrome are called sunny.
Probability
It is worth noting that children with Down syndrome are still rarely born to healthy parents. However, there are groups of people who are at greater risk than others.
A “sunny” child is most likely to appear:
- those parents whose age exceeds forty-five years for the father and thirty-five for the mother;
- if there is one of the parents of children with Down syndrome;
- marriage between close relatives. Diagnosis of Down syndrome during pregnancy is now carried out constantly.
Of greatest interest is the fact that in a healthy marriage, completely healthy parents may have a “sunny” child due to the influence of their age. What is this connected with? The fact is that before the age of twenty-five, a woman can give birth to a child with this deviation with a probability of 1:1400. Before the age of thirty, this can happen to one woman in a thousand. At thirty-five there is a sharp increase in this risk to 1:350, after forty-two years - 1:60, and, finally, after forty-nine years - to 1:12.
Judging by statistics, eighty percent of children with this pathology are born to mothers who have not reached the thirty-year mark. However, this is explained by the fact that more women give birth before thirty than after.
Increasing age of women in labor
Currently, there is a tendency to increase the age of women in labor. But we must remember that even if a woman looks great at thirty-five and is actively engaged in her own career, her biological age will still work against her. Nowadays, it’s rare for anyone to look their age, since the female half of the population has learned to take very good care of themselves. It is clear that this particular time is the most suitable for leading an exciting, active, eventful life, traveling, building a career, starting a relationship, loving. However, genetic material, as well as female reproductive cells, steadily ages after a woman reaches the age of twenty-five. In addition, nature provides that over time, a woman’s ability to conceive and give birth decreases.
It is worth noting that the risk of having a child with disabilities is high not only in this category of mothers, but also in very young mothers who have not yet turned sixteen years old.
The development of Down syndrome is not influenced by the gender of the child, and this pathology is equally likely to occur in both girls and boys. However, modern science can predict the birth of a child with such a syndrome in the womb, when there is a choice: leave it or get rid of the pregnancy, and the parents can make the decision themselves.
We figured out who these “sunny” children are.
Celebrities
There is an opinion that people with Down syndrome cannot study, work, or achieve success in life. But this opinion is wrong. Among the “children of the sun” there are many talented actors, artists, athletes and teachers. Some celebrities with Down syndrome are featured below.
World famous Spanish actor and teacher. Pascal Duquenne is a theater and film actor. The paintings of the American artist with Down syndrome Raymond Hu delight connoisseurs. Masha Langovaya is a Russian athlete who became a world champion in swimming.
“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’s 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 it because of”, “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.
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