1st EBU International Conference on Education, 19-23 July 2000, Montegrotto Terme (Padua) - Italy
I come to you from the parents' association for visually impaired children in Finland, N�k�vammaisten Lasten Tuki ry. I work there as a manager. So my point of view concerns families: how they have organised the association to support their children and what the tasks of the association are in order to support families in educating and rearing their children at different stages of the child's life. And, of course, I want to introduce the principles and main functions of our association.
This family association was founded thirty years ago. In the first year, 1970, there were 18 members, now there are almost 900 members, (700 families), which is estimated to be 70-80 per cent of all visually impaired children of the age 0 -16 in Finland.
Thirty years ago the main question which occupied the minds of parents was the question of integration at school. Up to the 1960's almost all the blind and severely low vision children used to go to the blind boarding schools. To send a seven-year-old little girl or boy far away from home to unknown circumstances was hard for the families. In addition, parents worried about how their children would manage when they became adults if they had not had connections with persons of unimpaired vision. That is why they so deeply wanted integration.
However, when a system changes, there will always be problems. The teachers in nearby schools did not know Braille or did not have the other special skills or knowledge to teach these kind of children. So, at first, improving the level of schooling of the integrated children became the main task of the association. Little by little a system developed and gave each area in Finland special services for all the blind and partially sighted pupils.
With integration some other problems appeared as well. When the visually impaired children moved to the schools near their homes, the social ties to other visually impaired companions were broken. Becoming friends with children with normal eyesight was not so easy. While at the blind school leisure time activities were organised, now the hobbies had to be found in a different social context. In this situation many of the parents found how much more information concerning visual impairment they needed and how important it was for their children to meet other visually impaired children. These new problems gave the association further tasks: to relay information and to arrange camps where children could meet each other.
Our own publication, Silm�ter�, is a very good means to relay information to every member-family. From Silm�ter�, parents get a lot of information about the life of visually impaired children, about social and health services, about rehabilitation and therapies, about new research made in the field of visual impairment, about school, educational issues, professional training and so on. Parents need this information in order to survive in the labyrinth of limits and possibilities. On the other hand Silmater� is not only for parents, but for professionals as well. These professionals get information about the everyday life of families and their children. They get an idea of what the real child behind the specific medical report can experience and accomplish.
We think that it is important that we have no rehabilitation goals on our normal family-camps. Anyway, we are paying a great deal of attention to the children having an opportunity to have new experiences with other blind and partially sighted children. For example, at the camps they meet farm animals, they can try different kinds of sports ranging from canoeing to shooting, and they have adventures in forests. These experiences help them visualize such things as nature and understand the meaning of co-operation. That is very important, but all this comes by playing and having fun together.
Nowadays we have found the family-network a very basic element in our work: the families are a great emotional and practical support for each other. This year, as we have an anniversary, we have some special interventions. In autumn we will have a seminar, where the focus will be on blind children's play and creative activities. There will also be two special publications. The first of them is a brief book of stories written by parents and grandparents of visually impaired children. The other publication will follow the history of blind children in Finland from the 18th century to the present day.
Statistics have shown that for visually impaired youth a high level of education is the key to equal life opportunities. Education is more than schools, colleges and universities: it is a lifelong journey beginning from birth. For the family their own child is in many cases the first visually impaired person they have met. They do not have a clear vision of what kind of future their child is going to have. They might be confused as their baby has a different way of discovering the world. Parents need positive models and a realistic vision of the future. On these elements they can construct a solid base for their child's life and education.
Rehabilitation and therapies are a very great help. They give clear goals and scales on how to evaluate different skills as language, motor control and so on. Sometimes, in my own work, I have noticed that parents are stressed by all the different demands on their child. In many cases time is a real problem especially for the families with disabled children for there are so many extra things to do.
As you have noticed, our association's role is to support families in their everyday life. Much is included here. Most of the everyday issues of these families are tied to the tasks of arranging practical things arising from their child's vision: demands of schools, rehabilitation and so on. However, we try to keep in mind how much happiness and love every child needs to grow up and become a unique, valuable individual with dignity and a positive outlook on life. As one of our members said: the task of the association is the task of creating joy.
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