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Master of Special Education
N-7224 Melhus, Norway
Phone: +47 72 87 93 00
E-mail: toril.loe@statped.no
Early Intervention: Inclusive Education
"A Resource Centre's Contribution to a Successful Inclusion for a Visually Impaired Pre-school Child in his Community"
The Resource Centre's Service Profile is:
Social inclusion of visually impaired people in kindergarten, school and home environment.
This presentation will throw light on a Resource Centre's contribution to improve daily life for a visually impaired child in kindergarten and his transfer to school. I will describe a long-term project, starting when the child was 3½ years, and going on till he starts school at 6½ years old - autumn 2003.
Varg (that is a Norwegian word for wolf) is a nice boy who is socially blind and has additional problems related to autism. He has some residual vision, and is able to orientate in well-known environments. He is number 3 of 4 (very soon 5) siblings. The family speak two languages; father speaks Norwegian and mother mainly Sami language to their children. When I first met Varg he was 6 months old. He was a non-demanding child, satisfied when he was fed and cared for. At that time we could not see any functional use of vision.
At 7 months, Varg started in a Sami kindergarten, and he had a special pedagogue who took care of his needs. All children and adults in the kindergarten spoke Sami language. The personnel working there, had no tradition in working with blind children, and they had a sceptical attitude towards my counselling. Years ago I had learned some Sami language and had read about the culture and I had experience from three other Sami families and kindergartens, so I thought I knew something about this culture. I tried to get in good contact with the personnel, but the work did not go very well, and so this was a very special situation. The special pedagogue however, was interested in her work, and we worked out a schedule for Varg with some structuring of the day. I had learned from my earlier experiences that there was little room for such structuring in a Sami mánáidgardi (Sami word for kindergarten), and I gradually found out that they sometimes did - sometimes did not follow the schedule.
After 1½ year Varg unfortunately had to leave his kindergarten. He had no pedagogical support for 5-6 months, and then he started in another kindergarten. This was a kindergarten where all adults and children spoke Norwegian. The personnel looked forward to having Varg in the kindergarten, and wanted to learn everything possible about him and his impairment. They would like to do something about the physical environment, learn about mobility and other compensating skills.
Parallel to my counselling in the kindergarten and to the parents, I had a project going on in the family. I regularly was making video recordings of the play and interaction between mother and child for 2 years, and had conversations with the parents in connection with these video recordings. This project by Inga-Britt Johanson, The University of Stockholm, has the aim to make a screening instrument to assess the risk of developing autism in blind children.
In spite of all efforts, Varg had just a small developmental progress. He did not speak - neither Sami language nor Norwegian, he withdrew from other children, and seemed displeased with his situation in the kindergarten. He wandered around, doing nothing but listen to music and had some stereotype play behaviour. His favourite plaything was a kitchen whisk.
When Varg was 3 years old, I had a discussion with the personnel about my suspicion of problems related to autism. I did not think all his problems were caused by the visual impairment. What in his behaviour was related to his reduced vision and what to autism? We agreed to talk to the parents about this, in a very gentle way. During my counselling in the family, we had talked about the risk any blind child has for anomalous development and problems related to autism. We had discussions about his stereotypic play, his withdrawal, his lack of language, the sleeping and feeding problems, but I had not directly mentioned autism connected to Varg's behaviour - although I have had many thoughts about it. So - it was me that had to inform the parents about this suspicion. This was not easy, and we had many tears and explanations before the parents realised that through these years they had been aware of these signals themselves. What were they going to say to their families? Would they understand? Remember that especially the grandparents could have a twisted opinion of what autism is. Even today Varg's mother has problems using the word autism - the word autism gives her some bad taste in her mouth.
September 2000 (Varg was by then 3½ years old), 3 advisers from Tambartun travelled a long way to meet parents, grandparents, aunts and uncles, personnel from kindergarten, local authorities and other people involved in Varg's training. Since 1999 Tambartun has employed 3-5 persons connected to a national autism project. One of those was now engaged in this new project. For the next three years two - sometimes tree advisers from Tambartun would go there 5 times a year to meet all the personnel involved in the project. The distance from Trondheim to Alta is approximately 1500 km - corresponding the distance from Amsterdam to Milan.
We set up a meeting with the families, to inform and to create a picture of how they interpreted Varg and his behaviour. In this first meeting Varg's closest family and the personnel in the kindergarten were to describe Varg's behaviour, why they thought he did what he did, and how did they all react on his sometimes-odd behaviour?
Varg had not received a diagnosis stating autism, but we took every opportunity for using all pedagogical and methodical plans that could be useful to make a better way of life for Varg and his family. This first meeting was mostly focused on information about autism and problems related to autism. Further on there has been counselling in kindergarten on how to use a day planner, and the necessity of structuring the day for a child with problems related both to autism and visual impairment.
We started a survey of his present skills, the expectations and needs for future education. We put up a list:
Starting with the last, the most important goal was: Social inclusion and full participation and equality of status in the community. Future goals were: Become self-sufficient, improve better skills in communication and speak the two languages equally well, learn to dress himself, drink from a cup, have no diapers, have some social competence and some friends.
A new project was started.
This project has the main goal to achieve new skills based on the child's interests and his strongest characteristics. Varg needs a structured, well-organised and predictable day. The project intends to result in a higher level of competence in the local support system.
The project describes an approach to the problems in 3 levels:
· Focusing on the child's own qualities
· Structuring the day to give a general view of activities
· How can structuring of the day and small playgroups be an organiser for communication and social interaction between Varg and his playmates?
· Organising the physical environment
Remedial action:
A day planner was introduced to help Varg to a general view over daily activities. The personnel were sceptical to a strict day planning and detailed structuring of the day, and had an attitude of feeling sorry for Varg, or were afraid of his occasional fits of rage. Small playgroups were introduced, so that Varg should feel some confidence playing with other children. Varg would be picked up at home and brought to the kindergarten every morning by the personnel, so he could be there at the appointed time.
Result one year after the project started:
We had started to create an individual plan.
Varg had become a more content boy, he showed more initiative to activities and to verbal communication. He was now able to sit at the table eating his cereals or biscuits without being furious or just leave the table. He was still depending on the adults using the day planner whenever there were changes in activities. A mobility route from home to kindergarten was started.
How does it look today?
1. The Individual level:
Varg has become more independent. He can now go to the day planner when he gets bored and wishes to change activity. For Varg, the use of the day planner implies change in activities and provides a motivation for further activities. He has now 15-20 different symbols, and knows the meaning of each. He knows what to do when he enters the kindergarten every morning and loves doing the priority activities. He has started working on a computer with touch screen, and has different homemade talking books containing pictures, sounds and text in print and Braille - Norwegian and Sami language.
He has achieved better language skills, uses the language actively to express requests and basic needs, his vocabulary increases both in Sami and Norwegian language. He will sometimes make contact with other children, not primarily to play with them, but to borrow toys from them. He understands that they can possess something that he wants to have for himself. He has started looking up the other children when he notices that they are occupied with activities. He drinks his milk or juice from a mug with a cut rubber nipple, and is using diapers only when he is outside the house and at night.
The personnel have received more knowledge, including advice and guidance to support them in their daily work with Varg. The personnel in the kindergarten have been invited to Tambartun to attend courses and to meet personnel having similar approaches to the problem. They have overcome their helplessness, have faith in themselves and have more enthusiasm to carry on their good work. The personnel in the kindergarten and the parents state that the progress is mainly the result of introducing the concrete day planner, not to mention the close teamwork in the project group.
A budget has been set up including exemption from other tasks and deputies for personnel in the municipality and kindergarten. The coordinator of the project has set up an account of 52.000 NOK (7.000 Euro/USD) for these three years, and the project has been carried out entirely by project funds. The expenses related to the two advisers from Tambartun are paid for through Tambartun's budget and from the Autism project. That is 9.000 NOK
(1.200 Euro/USD) for each person at every visit. The total amount will be 270.000 NOK (36.000 Euro/USD) for these 3 years).
We cooperate with local resources having knowledge about using two languages and with experience from similar projects - the combination of autism and visual impairment. The Resource Centre of Northern Norway with competence in autism and Sami language and the Habilitation Unit in the county are now participants in the project.
Some of the staff from the future school have been invited to learn more about autism and visual impairment, and are looking for a teacher who speaks Sami language. A preparation for a mobility route from home to school will be started. There will also be a project concerning teaching aids such as books adjusted to his level of development.
The most important aim for the project was and still is Varg's social competence. He has now attained better capacity to tolerate other children, and he accepts to a greater extent to be more closely connected with the other children. At present he seldom withdraws from situations involving several children. Although he still prefers contact with the adults, he also likes playing in small playgroups.
It is still a long way to go until we reach the end of the road, but we know that the road is being constructed while we slowly are walking. So we keep on walking, leading Varg into the inclusive community where he belongs.
Introduction:
Toril Loe:
I have been working at Tambartun Resource Centre in Norway since 1980. Tambartun Resource Centre is one of the 41 Norwegian Support System units for Special Education. There are two centres in Norway offering services to blind and visually impaired people. Tambartun offers services in the western, middle and northern parts of Norway, and Huseby in the eastern and southern parts.
My education is preschool teacher with additional studies and training as special educator for the visually impaired. I have a master degree in special education. My main task and research are for the guidance of parents and caretakers for blind pre-school children. When I am not doing my internal work at the Centre, I will do field work in the northern parts of Norway; the district of the Northern Lights, the Sami People and the Midnight Sun.
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