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Children with a Down syndrome. Possibilities of social adaptation of

What is a Down syndrome?

the Word “syndrome“ designates a set of signs or features. The name “Down“ comes from a surname of the doctor John Lengdon of Down who for the first time described this syndrome in 1866. In 1959 the French professor Le Jeune proved that the Down syndrome is connected with genetic changes. The body of the person consists of millions of cages, and each cage contains a certain number of chromosomes. Chromosomes are the tiny particles in cages bearing precisely coded information on all inherited signs. Usually in each cage there are 46 chromosomes which half the person receives from mother, and a half - from the father. The person with a Down syndrome in 21 - y to couple of chromosomes has the third additional chromosome, as a result of them 47. The Down syndrome is observed at one of 600 - 1000 newborns. The reason for which it occurs still is not found out. Children with a Down syndrome are born at the parents belonging to all social groups and ethnic groups with the most different education level. The probability of the birth of such child increases mothers, especially after 35 years with age, however most of children with this pathology everything are are born at mothers who did not reach this age.

of the Down syndrome cannot be prevented and it cannot be cured. But thanks to the last genetic researches now about functioning of chromosomes, especially about 21 - y, is known much more. Achievements of scientists allow to understand better typical features of this syndrome, and in the future they, perhaps, will allow to improve medical care and socially - pedagogical methods of support of such people.

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As distinguishes a Down syndrome?

Existence of a Down syndrome usually comes to light soon after the child`s birth as the doctor, the nurse or parents find characteristic features. And then chromosomal tests are surely carried out to confirm the diagnosis.

corners of eyes are slightly raised by

At the kid, the person looks a little flat, the oral cavity is slightly less, than usually, and language - is slightly more. Therefore the kid can put out it - a habit of which it is gradually possible to get rid. Palms are wide, with short fingers and the little finger which is slightly bent inside. On a palm there can be only one cross fold. Easy muscular slackness (hypotonia) which passes when the child becomes more senior is observed. Length and weight of the newborn are less, than usually.

As the excess chromosome proves?

the Excess chromosome influences a state of health and development of thinking. One people with a Down syndrome can have serious violations of health, at others - insignificant.

Some diseases meet at people with a Down syndrome more often, for example: congenital heart diseases, the part from which is serious and demands surgical intervention; often shortcomings of hearing meet and still more often - sight, quite often there are diseases of a thyroid gland, and also catarrhal diseases.

people to a Down syndrome usually have violations of intelligence in various degree.

Development of children happens to a Down syndrome very different. Just as ordinary people, having become adults, they can continue to study if they are given such chance. However it is important to note that as to each ordinary person, it is necessary to treat each such child or the adult individually. In the same way as it is impossible to predict development of any baby in advance, there is no opportunity to predict in advance development of the baby with a Down syndrome.

Parents learn that the kid has a development violation

All parents who endured this moment said that they felt terrible shock and unwillingness to trust in the diagnosis - as though there came the doomsday. At this moment parents, as a rule, are terribly frightened, and it seems that they want to run away from this situation.

Some parents try not to face the truth, hope that there was a mistake that the chromosomal analysis was carried out incorrectly, and at the same time they can be ashamed of such thoughts. It is natural reaction. It reflects the aspiration, general for all people, to hide from a situation which seems desperate. Many parents are afraid that the child`s birth with a Down syndrome will be reflected in some way in their social status, and they will fall in eyes of others - as the people who gave life to the child with violation of intellectual development.

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to return to the usual state, to start daily affairs, to establish habitual relations, needs not one month. Perhaps, the grief and feeling of loss will never disappear finally, and, nevertheless, many families which faced this problem demonstrate also beneficial influence of such experience. They felt that life got new, deeper meaning, and became better to understand that in life it is really important. Sometimes such crushing blow gives force and rallies a family. Such relation to a situation will most favorably affect the child.

Acquaintance to the kid

Some parents admit the unwillingness to get closer to the newborn. However at some moment they overcome the doubts and fears, begin to consider the kid, to touch it, to take it on handles, to care for it; then they feel that their kid first of all the baby is much more similar, than is not similar, to other kids. Coming into contact with the child, mother and the father better feel his “normality“. Parents usually seek to get acquainted with specific features of the newborn somewhat quicker.

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to Each family needs different time to feel with the child it is good. The feeling of grief can appear again, especially when some circumstances remind parents that their child with a Down syndrome is not able to do that his ordinary age-mates are able.

How to tell others

Having learned

that the kid has a Down syndrome, parents often cannot solve at once whether report about it to the family and acquaintances. Anyway the family, friends, acquaintances will see that the child looks a little unusually, will notice constraint and grief of parents. They will start conversation on the newborn, and it can become the reason of awkwardness or even to make the relations tense. Conversation, let painful, can become an important step for return to parents of former self-confidence and composure.

In turn, friends and the family too not always know how to them to react to such sad message. They are afraid to offer the help that it was not regarded as intervention in others affairs or idle curiosity, wait for some sign that their presence is desirable, and the help can be useful. Happens that the relations fall if parents wait and do not obtain the evidence of a former arrangement close to themselves. The most reasonable in such situation - to start the affairs which are usually following the child`s birth: the normal, standard signs of attention will help parents to feel better.

During this period the separate help can be required by grandmothers and grandfathers. Their attention concentrates on adult children - parents of the kid, and they painfully reflect how to protect them from a stress.

Conversation with brothers and the newborn`s sisters

If with a Down syndrome is born

the younger child in a family, before parents there is one more difficulty: what to tell the senior children. There is a natural desire to protect them from chagrin of adults. Often parents overestimate sensitivity of the children to experiences of adults and their ability to notice something unusual in appearance and development of the newborn. However experience shows that it is important to talk to them as soon as possible.

Than to help the kid?

Parents of children with a Down syndrome, in the same way as well as all mothers and fathers, are anxious with a question: what future expects them children? What do they wish for the children?

  1. to be able to communicate fully both with ordinary people, and with people whose possibilities are limited. To have true friends among that and others.
  2. to be able to work with
  3. among ordinary people.
  4. to be a desired visitor of those places where other members of society often come and to participate in the general actions, feeling at the same time it is comfortable and sure.
  5. to Live in the house which would correspond to desire and material resources.
  6. to be happy.

to learn to interact with ordinary people as it is necessary, the child with a Down syndrome has to attend usual public school. Integration into usual school will give it the chance to learn to live and work as it is accepted in the world surrounding it.

Integration can be different. The pupil can spend all school day in a usual school situation, at the same time he is given necessary help: special manuals are provided, with it the additional personnel are engaged, for it the special (individual) curriculum is formed. Or, though the usual class will be the main educational circle of the child, the pupil can spend part of time in a special class. At the same time the number of hours, carried out in a special class, is established according to its individual needs and is coordinated with parents and school personnel in the course of drawing up the individual training program.

Many teachers and parents are convinced by

that children with limited opportunities, irrespective of violation type, should attend those schools to which the children living in the neighbourhood go. If the child is carried in any other school, he becomes not such as all in the opinion of the public at once. Besides, in this case it is much more difficult for it to adjust good relationship with age-mates and to find among them friends.

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the Right of children with a Down syndrome, as well as other children with limited opportunities, on the maximum social adaptation, that is on visit of usual kindergarten and school, in Russia is fixed legislatively 1 .

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1 According to the Convention on the Rights of the Child (it is approved by the Gen. Assembly of the UN on November 20, 1989) ratified by the Resolution VS USSR of June 13, 1990 No. 1559 - 1, “children - disabled people with deviations in intellectual development, including children with a Down syndrome, children with multiple psychophysical violations, have the right to education and rehabilitation in the conditions of the greatest social integration in system of the general or vocational (correctional) education“ .

governing bodies of education provide to

According to item 1 of Art. 16 of the Law “About Education“ “reception of all citizens who live in this territory and have the right to formation of an appropriate level“. At the same time parents have the right “to choose forms of education, educational institutions“ for the children, provided by item 1 of Art. 52 of the Act of the Russian Federation “About education“ .

we Are guided by the international experience

One of signs of our time - surprising progress in development and practical application of new methods of training of children with lag of intellectual development. First of all it “the early pedagogical help“ to these children from the birth till 4 - 5 years (and to their parents) and mentioned above “the integrated education“ - education and training of these children in regional kindergartens and schools among normally developing peers. Parents and teachers became better to understand need of such children for love, attention, encouragement; they were convinced that these children can as well as others, with advantage for themselves to study at school, actively to have a rest and participate in life of society. One of consequences of such progress in civilized countries - the fact that all children with a Down syndrome are raised in families, but not in special establishments outdoors. Many of them attend usual schools where they learn to read and write. Most of adults with a Down syndrome have work, find friends and partners, can conduct full-fledged and rather independent life among ordinary people. Our country - so far at the beginning of this way.

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It is used new methods of training

Growth of popularity of programs of the early pedagogical help is caused by results of their introduction. Comparative researches showed that children with of whom took care according to such programs by the time of receipt in kindergarten and in school were able already much more, than those whom they did not concern.

Many children began to attend usual local schools where they are trained in the general classes according to individual programs. According to researches, all children show the best progress in education in the conditions of integration.

Being among typically developed peers, the special child receives examples of the normal, corresponding to age behavior. Attending school at the place of residence, these children have an opportunity to develop relationship with the children living in the neighbourhood. Visit of usual school is a key step to integration into life of local society and society in general.

Children with averages and even with heavy violations learn to read and write

, communicate with the “healthy“ people surrounding them. They seize these abilities not because they are given some “medicine“ but because they were taught what is necessary when it is necessary and as it is necessary. In our country the centers of the early pedagogical help are also created and attempts of the integrated education of such children begin. In 1998 the Ministry of Education of Russia recommended for wide use the Program of the early pedagogical help to children with deviations in development “Small steps“, authors: M. Pitersi, R. Trilor.

the Special profile Cannot tell

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that children with a Down syndrome just lag behind in the general development and thus need only the simplified program. They have a certain “profile of learning ability“ with characteristic strong and weaknesses. Knowledge of factors which facilitate or complicate training, allows teachers to make better plans and to select tasks, and also to work on their performance more successfully. Thus, the characteristic “profile of learning ability“ and the receptions successful at training of children with a Down syndrome, along with individual abilities, hobbies and features of each child have to be taken into account.

Training of children with a Down syndrome relies on their strengths: the good visual perception and abilities to visual instruction including ability to learn and use signs, gestures and visual aids; ability to learn the written text and to use it; ability to study on the example of peers and adults, aspiration to copy their behavior; ability to be trained on materials of the individual curriculum and on a practical training.

of Relationship with parents, with peers

Emotionally children with a Down syndrome a little what differ from the healthy peers. From - for more limited, than at “ordinary“ children, a circle of contacts, children with a Down syndrome are more attached to parents. The friendly relations with peers are of special value for such children. Imitating them, children with a Down syndrome can study how to behave in everyday situations how to play how to skate on roller-skaters, the bicycle.

For establishment of the positive, friendly relations between children - disabled people and normally developing peers are had to it is carried out programs of mutual support and patronage of pupils and involvement of children - disabled people to out-of-class occupations - circles, section, etc. Within programs of mutual support normally developing children help children - to disabled people to perform tasks, to prepare for “control“, to participate in other cool and out-of-class occupations and actions, etc. It is important first of all for “healthy“ children because creates a favorable educational environment for all children. Experience shows that the priority obshchechelovechesk is quite so approvedtheir values, free development of the personality, civic consciousness, tolerance, respect for the rights and freedoms of the person is cultivated.

After school

In the democratic countries many young people with a Down syndrome after leaving school get the primary professional education in a varying degree corresponding to their interests and opportunities. It allows them to find work in the most various areas. They can work as assistants to tutors in kindergartens, assistants to average medical personnel in clinics and social institutions, to perform various technical work at offices (especially well master work on the computer), to work in services industry - cafe, supermarkets and videoshops, and also to conduct other professional activity. Cases when people with a Down syndrome are engaged in creativity in the fine arts, music, choreography, theater and cinema are known. In 1997 the actor with a Down syndrome Pascal Duquen won at the Cannes Film Festival the first prize for execution of the best male role!

Family experience

“The duckling is able to fly, and I do not. It has wings, and at me - no. It has a long nose, and at me - short. The duckling is able to float, and I am able to swim too. Duckling good and kind. What does he look like? I already told that it has a long nose. It yellow in a speck, covered with down. Let`s say I go to the wood, at me the long nose grows, feathers grow, I become yellow in a speck, I have wings, I can fly on the sky! And I am a duckling!“

It is the composition on “I - as though an Animal, in the Movement“ our daughter Vera, the schoolgirl of the 7th class wrote. It seems, insignificant achievement for the person in 15 years, but only not for this purpose which has a Down syndrome.

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This diagnosis it was made in maternity hospital, almost right after the birth, than for a long time cast us with the wife into the abyss of heavy experiences. All pleasure and a celebration from the birth of the child were turned inside out.

Consoled in

us a year later on the European congress of the organizations of parents which children were born with a Down syndrome. We saw eyes of these parents, quietly and surely looking to the world, and - with light of love and pleasure - on our child. We learned the name of this look - “stimulating“, inspiring for life and development. Before there were nervous information searches, councils it seems “just care for it“ and hope that the diagnosis is wrong for which it is possible to hide at least for a while.

With the first progress of Vera the pleasure of communication appeared, and gradually ourselves learned “to shine“ with eyes on the daughter. Learned to treat the child - to the and others - with expectation of progress, learned to create “the developing environment“ that, of course, is hard in our life.

would Console us earlier, at its birth, this future composition and the long list of achievements, including the last - occupations in dances in style of a flamenco and training in badminton section? I believe so.

all those difficulties - “barriers“ which we habitually overcome in everyday life, chagrin which overtakes suddenly when you meet her coevals and age-mates, much more skillful and independent would Upset with

us? At last, those efforts which all family, including the closest family, were used for its development and education? We do not know...

We became others - stronger, more brave and older.

But being still younger and more self-confident than

, we created the organization of parents - Down Syndrome Association to protect the rights of our children as it is done by the same parents in the West and to pass on further the generalized experience.