to disabled children
Mr. Koloskov, president of the Down’s Syndrome Association, speaking at the joint seminar of the Institute of Correctional Pedagogy of the Russian Academy of Sciences and the Moscow Patriarchate, which took place in 1995, said in particular: "There is a certain verge of marginalization which is very close to Golgotha in its intensity. Thousands of parentless children who have been abandoned because of their sentence-like diagnosis described as “intellectual disability” and “inability to learn” are lying in boarding schools all over Russia. We speak about it and write about it to newspapers, but everybody seems to be very calm about it. You cannot say they believe it to be normal, but simply think that these children have nothing in their heads and there is nothing to work with. They believe intellect to be what is human. But what is a human being? Is it an ability to analyze and to come to conclusions? I believe it is a matter of faith. Without indulging into philosophy, I believe these children are capable of love. I do not want to prove that they are of God and that God’s grace extends to them. I would like to say a different thing. These children are closer to Jesus than any other, because the depth of their suffering, both physical and spiritual, is incomparable, but they cannot tell about it; they are powerless and pure. The point is not to bring them gifts for the New Year. The point is rather to come to them and stay with them and to save them. They should be returned to society".
In Russia until recently, just as it was 50 or 70 years ago, a child with Down’s syndrome believed to be incapable of learning and surviving. In Western countries after World War II, parents of children with deviations in intellectual development, including Down’s syndrome, felt the urge to ensure to their children the same rights and opportunities as normal children enjoyed. As a result of their struggle the whole system of assistance to people with mental disorders was reformed. From the 60s to the 90s, all Western countries developed new programs of diagnostics, research and training. The practice of institutionalizing people with developmental disorders was strongly condemned. The new legislation ensured the right to public education to all children of school age having various kinds of anomaly in development.
In the West today, children with Down’s syndrome are raised in families and enjoy all the necessary pedagogical and social assistance. Their life expectancy and the quality of their life are increasingly nearing the average for their countries. According to some estimates, 44% of those born in the 80s will live to the age of 60, while over 30% ? to 68. People with Down’s syndrome are thus given a real opportunity to preserve good health and live a long and full life: to receive social recognition, to attend ordinary schools, to work and become members of society.
The Down’s Syndrome Association (DSA), a society for parents of children with Down’s syndrome, was founded in Moscow in 1993.
The activity of the Down’s Syndrome AssociationThe DSA works in cooperation with the Presidential Administration, Federal ministries and departments, as well as maternity hospitals in Moscow, genetic counsellors and other organizations. It translates, prepares for print and distributes, mostly free, the latest books on assistance to people with disorders in intellectual development. The program of early pedagogical assistance, called “Small Steps”, of the MacQuary University, Australia, translates and dubs video-films.
Since 1993, the DSA has given counseling and social assistance to parents of children with Down’s syndrome, responding to their letters, distributing educational aids and video-programs about assistance available today and the abilities of children and adults with Down’s syndrome.
The DSA has set up a system of medical, pedagogical and social assistance given to children with Down’s syndrome and their families from their birth. The DSA staff members work in maternity houses and visit children at home. About 70 children receive this kind of help. The association also promotes the integration of children with Down’s syndrome into kindergartens.
Since its outset the DSA arranged for three children with Down’s syndrome to undergo cardiac operations in the USA, Italy and Holland.
Since October 1994, the DSA has given lessons to 20 adults with Down’s syndrome in applied arts, theatrical performance and teaches them to play piano and flute at the DSA Artistic Center. The recitals of their orchestra called “Magic Flute” have been a great success.
In autumn 1996, the DSA launched a unique project for care and rehabilitation of disabled orphans at the psychoneurological boarding school. This is a join venture of the DSA, the Orthodox Church and the boarding school. Participating in it are influential charitable organizations in France, Switzerland, Germany, Norway, Denmark and specialists from these countries. Through their joint efforts a nursing and rehabilitation ward was arranged for 115 bedridden children. Now these children have come back to life! Many of them have learnt to play with toys, to eat without assistance, to walk and communicate with other children and adults. Over 50 staff members of the DSA, who are parishioners at churches in Moscow, among them a pediatrician, neuropathologist and a psychiatrist, and over 30 staff members of the boarding schools, who also became volunteers for the DSA, are working together under this project.
According to Leonid Mogilevsky, leader of the paramedic teachers team, "The goal of our group is to create for these children an environment of human relations as close as possible to those in a family. Being brought up in such a surrounding, children have more chances for developing their human abilities". Bathing and dressing these children, playing games with them or conducting lessons, paramedic teachers try to treat them as parents would treat their own children in normal families. Any action is necessarily accompanied by caress, addressing by name, smile, and eye-to-eye contact.
This is a story told by Alexy Shuvayev, one of the paramedic teachers: "For two years of our work with them the children have changed not only externally – they have put on weight an their skin has cleared up – but also internally. They have found a new word; they began to fantasize. Their existence has ceased to be an endless pain to become a conscious and serious endeavor. Many children have learnt to play on their own, to imitate the adults, helping them in everything. They are very moving when caring for one another. All children seemed the same before, as the condition of their life made them impersonal. Now every child has his or her own character, likings and habits. Their disease puts on them a special stamp; they are entertaining and have many surprises for those who love them. Now they have become simply children with their children’s trusting attitude to life and people".
Thousands of volunteers around the world help specialist in their work with children and adults with mental disorders. Some devote to this several hours a week, while others one or two days off a month. We invite all those who are sensitive to the fate of these children and who want to bring them the warmth of their hearts to become their friends and voluntary helpers for specialists and parents.
This is what Leonid Mogilevsky, leader of the team of paramedic teachers and coordinator of the Care of Children Association and also a parishioner of the Church of Our Lady the Life-giving Source, has told us.
The goal of our group is to create for these children an environment of human relations as close as possible to those in a family. Being brought up in such a surrounding, children have more chances for developing their human abilities.
Scientific practice both in Russia and abroad has proved that the work with children suffering from serious mental disorders and attendant somatic disabilities and neglected pedagogically, medically and emotionally should be based on a method called "maternal" or "family" approach. It is an attempt to substitute as much as possible their new surrounding for their home and parental care of which they have been deprived from the very first days of their lives.
In autumn 1995, a small group of the Association members, like-minded enthusiasts and parishioners from churches in Moscow, began their work at Psychoneurological Boarding School No. 30. First we took charge of 35 bedridden children, acting as nursing teachers. As we tended and taught the children, we sought to treat them as parents treat their own children in an ordinary family. We dandled those who did not know of the warmth of parents’ hands; we sang lullabies to those who never heard them; we smiled and talked to them. Indeed, every person is worthy of Christian mercy, irrespective of his or her social usefulness.
By summer 1996 our “family” had doubled and the number of nursing teachers had to be increased. It was not easy to find people willing to throw up their work and to devote themselves to sick children.
Sometimes the personnel displayed a lack of understanding: why should one talk to children while dressing or feeding them? Why should one express human compassion for them by one’s voice or look? Since former ideological principles denied these children the right to be loved, time was needed so that the Christian view and appropriate care of these children could bring forth their human image and dignity, while changing the attitude of those around them.
In the end of 1966, thirteen more children arrived from a boarding school near Moscow. Their condition was very serious. The growing number of children required more personnel, while the little experience we had already gained compelled us to think about raising the level of our work. The scale of our work and new challenges could no longer fit in the existing framework. For moral reasons we could not take in fewer children, leaving others without our help. If we did, it would appear to be more a scientific experiment than an act of mercy.
Early in 1997, we reached an agreement with Boarding School No. 30 and the Association on the establishment of a nursing and rehabilitation ward. Thanks to this agreement we could now invite supernumerary doctors to work at the ward, such as a leading psychiatrist, a psychoneurologist experienced in work with children suffering from cerebral palsy, and a pediatrician. This made a beginning of truly professional medical approach to individual children.
After January 1997, our work at the boarding school was planned in this way: a shift of 13 or 14 nursing teachers worked every day with 100 children. This allowed assigning one nursing teacher to a room with 7 or 8 children. The working day lasted from 8 a. m. to 9 p.m., thus giving us an opportunity to share with the children the entire day circle. Since we worked in three shifts, each nursing teacher had two days off after each working day. Actually each nursing teacher had his or her own charges, which made it possible to know their every peculiarity, weakness or liking.
Thanks to the agreement and to the participation of both Western and Russian benefactors, it was possible now to change the children’s living conditions. We arranged their rooms, in which nothing but beds were there before, bought more clothes, toys and improving games. The benefactors gave us wheelchairs and special armchairs, tables and chairs, as well as washing and drying machines. We set up a common game room with a dry swimming pool and exercise equipment. Tape-recorders played church, classic and children’s music in every floor. This was a great breakthrough of the living world into the empty and unemotional realm of our children.
Finally, the summer of 1997 brought our children another surprise. For the first time in their life they came out of the enclosed space they inhabited. The Norwegian Society of Disabled Children’s Parents gave our children many outdoor wheelchairs and they came out.
Gradually all this brought its fruit. Children began to come to life in the direct sense of this word. They began showing interest in life. Science and practice have proved that if a child is undesired, he can feel it already in his mother’s womb. Once born to this world, the child feels his loneliness even stronger and begins to die down.
God gives parents to every child. They are the first people to open for them the image of Divine love. It is impossible, of course, to replace children's parents fully, but we try as much as possible to give them love. Feeling warmth and care, therefore, these serious patients, once abandoned and neglected, begin to learn walking, understanding speech, singing, eating without assistance, uttering sounds and words.
In summer 1998, the nursing and rehabilitation ward was transferred to Children’s Boarding House No. 8 at Borisovsky Lane, 3/3 in the Southern Administration District.
Our plans for the future are very simple. Our primary task is to continue the work we began. Our “family” should be preserved. Secondly, the two-yearlong experience of cooperation between state-run institutions, the Church and public organizations should be shared with other boarding schools.
So far we could work thanks only to the financial support of people living in Western countries. Having learned about the fate of our children, they did not stay indifferent and helped our children through their own national charitable organizations. This support, however, cannot last forever. It helped us to lay the foundation, but we ourselves should build the house proper. We hope that Russian statesmen and businessmen, as well as parishioners of Orthodox churches and public and charitable organizations will pay attention to this common problem of ours and share in the act of mercy.
Here are the requisites for those willing to support our endeavor:
The regional public organization
Now, after nine and a half years, the Center has become one of the largest public charitable organizations in Russia, which managed to give help to some 5,5 thousand children beginning from babies to teenagers. Among the Center's charges and graduates are children with such disabilities as infantile autism, various genetic disorders, schizophrenia, psychopathology, organic brain affections, mental retardation, neurosis and other serious problems. At present the Center attends to some 250 children with such disorders, while consulting 150 more a month.
Among those who give assistance to children are teachers, speech therapists, neurologists, and specialists in therapeutic game exercise and massage, eurhythmics, art therapy, as well as neuropathologists, psychoneurologists, pediatricians, etc. The Center's specialists work in close cooperation with one another, combining their expertise in efforts to help children. At the same time, in their work they share and observe some common principles. They are unanimous in the conviction that it is possible to help any child. Their work is based on respect for the personality of a child and focused on regular psychological and pedagogical lessons rather than occasional medical consultations and medicinal assistance. In their work with children they seek to create a developmental tension conducive to the realization of all the child's abilities. The specialists of the Center are always open to new knowledge, using the experience gained in therapeutic pedagogy both in Russia and other countries and applying findings of their own.
This approach has allowed to achieve results extending considerably the idea of possible assistance to such children. The condition of every child attending the Center is gradually improving and sometimes has improved to a considerable degree. We believe that every child should learn. As a result, many children with serious developmental problems have been prepared for studying in ordinary or auxiliary schools. Many children who had no chance whatsoever to go to school have gradually learned to socialize, being taught under special programs.
The Center with its various programs has been granted a license for educational, social, medical and publishing activities. Its major activity, therapeutic and pedagogical work with children, has been carried out in various areas. One of them is the task to prepare for attending school the children with serious speech pathology and brain affection as well as disorders in communicational, emotional and volitional sphere. Such renowned specialists as A. Bitova, who was the founder of the Center, therapeutic educator R. Dimenstein, speech pathologist I. Zakharov, have directed our efforts in this area. The most experienced pedagogue N. Morgun has been constructive in founding preparatory school classes for teaching children who were believed to be "unteachable". The first in Russia, these classes have proved to be a success. The Center has also launched a program for correcting the inability of some pre-school children to adapt themselves to school. The well-known neuropsychologist A. Tsyganok, chairman of the Center’s Experts Board, directs this program.
The therapeutic workshops run by the Center to teach children pottery, sewing, weaving and joinery have helped even those children who have serious problems in development to build up considerable skills in these crafts.
The Center's outpatient diagnostic department together with a medical support group consults parents and specialists from other children's institutions, such as kindergarten preceptors and schoolteachers who are not indifferent to the fate of their charges.
The Center has a club in which teenagers with serious mental and behavioral disorders are engaged in active communication with healthy children of their age. They play in a common orchestra, organize joint performances, go hiking and learn crafts. The summer tent camp gives them new impetuses for development, enhancing their chances to "fit in" normal social life.
The Center seeks to prepare every child for entering state-run schools. There are still children, however, whose problems leave them no chance to get in existing educational institutions. Therefore, the Center, together with the Moscow Education Committee, has established an integrated school and two integrated kindergartens the first in Russia to teach children with various serious disorders. The Center has also set itself the task to establish special educational workshops for "special" teenagers in order to enable them to master the rudiments of their future occupation and to find their own place in normal life.
Working for over 9 years with “special” children, the Center has acquired a unique and manifold experience. Since the interest in the work of the Center is continuously growing, it has started to offer internship to specialists working with children in various regions in Russia. The Center has helped dozens of Russian organizations working with such children to join in professional telecommunication through an electronic library called “The Special Child” and a teleconference of the same name.
The Center has had to extend its publishing work, as there are not books whatsoever in Russia to help parents and specialists working with such children. It has already published several books by Russian and foreign authors, intended for educators and parents, and is preparing more books for publication.
The work of the Center has not been left unnoticed. The Moscow Government Charity Board chaired by Mayor Luzhkov granted Charity Passport No. 1 to the Therapeutic Pedagogy Center in May 1997, while its program was given the status of a citywide charitable project.
Unfortunately, the number of children standing in queue to get in the Center has grown from year to year, reaching now several hundred. When enrolling for admission, the Center has to warn parents that they will have to wait long for their turn. At the same time, we give parents detailed information about the correctional assistance available in the city and urge them to look actively for organizations that can help their children. Yet after 1,5 or 2 years of waiting for their turn, it becomes clear that the parents could never find another organization that would agree to help their child. Even in Moscow, various kinds of assistance, including even insufficient or ineffective, is provided for no more than 10% or 15% of the total number of children with serious developmental disorders. In this situation, the assistance given by the Center continues to be extremely scarce.
The Center believes this situation inadmissible. Without any opportunity to get the necessary help, the parents of a “special” child have to hand him or her over to a boarding school. In the Russian boarding school as it is now such child is doomed either to early death or to lifetime misery unworthy of a human being. Therefore, the Center believes it its public duty to stop the outrageous violations of children’s rights, doing all that is possible on various levels. We are convinced that our state authorities will soon address this problem. Therefore, we are actively engaged in developing a model of municipal service for assisting families with such children. Our proposals for a radical improvement of the disabled children rehabilitation system have already been submitted to the Moscow Government and will be soon sent to the federal authorities.
The Center has been financed through donations and grants. All the assistance is given children free.
The Center has carried out a number of serious projects, including those financed jointly by several European and American foundations and governmental organizations. It has failed, however, to find a permanent source of financing for everyday work with children in Moscow. For a long time it has maintained solid ties with Mr. Sune Olofson, a well-known Swedish journalist who, together with his Aspnechurch Christian community, has given us all the support he can muster. This community raised funds for the major repairs of the Center’s main building and was the Center’s partner in a major project under which our charges and their families received social support.
We have had long-standing relations with the Diakonical Service of the Evangelical Church in Germany (DW EKD). Thanks to its help the Center has had an opportunity for several years to carry out small but important projects, such as holding seminars, maintaining an electronic network of specialists in Moscow and other regions, etc. Since 1998 the Center has carried out a project called "The Development of Therapeutic Pedagogy in Russia”, financed by the DW EKD. This project allows specialists from various regions in Russia to raise the level of their skill. It is very important since the situation of providing assistance to children with developmental disorders is a much more difficult in regions than it is in Moscow. The funds of the project have been used to offer internship to specialists from various organizations, to hold seminars, to link up new organizations with the electronic network, to publish books for parents and educators, etc. Considering the financial crisis in our country, the DW EKD has allocated funds to provide winter support for low-income families whose children are taught by the Center.
Ms. I. LarikovaTop of the page
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