Abstract
Juan was born in January, 1991. We live in La Plata, capital of the Buenos Aires province. Juan has very complex needs. Because of the current regulations Juan is not only considered not suited for integration in a conventional school, but is almost excluded from the special school. We started two actions: an individual plan that takes into account his particular needs and difficulties - he goes to a conventional private kindergarten with a support teacher, and has private therapists with particular accent on alternative communication, almost not used for children with very special needs in Argentina. And a more slow action: the study and discussion about some strategy aiming to change the conditions that limit the right to education of children with very special needs. We are very worried because as Juan grows our efforts to provide him a worth-living life will be less effective. We believe that individual solutions are not useful in the long term, and we have very little specialized help to answer to these challenges. That is why we believe the second way of action is the only way of consistently changing things for every child and family in our situation.
I want to tell you a story. It started when Juan was born, nine years ago. We live in La Plata, a city of about 650000 inhabitants, which is the capital of the province of Buenos Aires, the wealthiest and biggest of Argentina. La Plata is 50 km away from Buenos Aires City, the capital of Argentina. The Universidad Nacional de La Plata is one of the most traditional and well known for its high academic standard.
Education in Argentina has a federal organisation: education policies are decided by each province, although provinces make their laws according to the Federal Law of Education.
In Argentina education is free and compulsory for children from 6 to 15 years of age. Pre-school, High School and University are also free.
In the province of Buenos Aires Education is ruled by the President of the Department of Culture and Education (Dirección General de Cultura y Educación), a Vice-president and a Board of General Directors.
Education of children with special needs is performed in Special Schools. Special schools are classified according to the type of disability they deal with. They belong to the government or to non profit parent's associations (these also depend on the Government ).
There are only two special schools available in La Plata for children that have physical impairments, no matter what other difficulties they may have: a public school, and a private school belonging to a non profit parents' association.
School interdisciplinary teams can decide that a child "will not learn anything else". These children are left out of school. The decision about what they will do is up to her/his parents. He/she can stay home or he/she can go to a Day Center. Day Centers take care of people's basic needs. They do not have any pedagogic approach.
JUAN
Juan went to the University Nursery until three (I am a University employee). He was the first child with very special needs attending this Nursery. Afterwards we thought he had to go to school, and we chose the private special school. He went there for three years, without any remarkable benefits. We were concerned about three aspects of the school offer: a) the lack of communication between school and family concerning the daily events of Juan's life, b) the lack of integration of these children with others outside the school, and with children with different levels of disability within the school, and c) the lack of a curriculum with interesting subjects and the practice of adapted arts and crafts activities.
When he was 7, with the support of his personal therapists, we decided that he would attend a mainstream kindergarten. He had to attend the 3-4 year old kids' room in a kindergarten not incorporated into the Department of Education, because the special school would not approve any activity towards Juan's integration to a mainstream school. The age gap was determined by the scarce supply of this kind of establishment.
He attended the new kindergarten with a support teacher, provided by the family. She provided the physical support during the activities proposed by the kindergarten's group teacher. They also had a working time of their own. She used Flo Loghorn's Programme of sensory stimulation. She wrote a daily record of his activities and emotions, and we did the same at home, so that a channel of communication was open about his life in both places. Every day Juan brought home this notebook and the piece of work he had made. When his father and siblings come home at noon, we read the daily record and look at his work, and we all talk about this. We knew that everything we did at home and his experience at school were mutually reinforced. We had no doubt about what he was interested in or what things he preferred.
But by that time we realised that language impairment is most challenging, and that it demanded the use of some other way of communication: otherwise the person would be lonely and locked as in jail. Then we tried to learn about alternative communication. We started to use pictures and photographs to refer to daily events and known objects. We gave Juan the opportunity to choose his clothes, or what activity he wanted to do. He told us what he had done at school or at home with these images. Also how he felt about a particular person.
As he likes letters and words, we offered them to him since he was five. He can recognise some words and he is permanently exposed to written language.
Through internet we knew about MOVE curriculum. It proved very useful. It taught us about the value of short steps. No matter if Juan is not going to walk, he can stand against me with a slight support while I lock the house, or open the door of the car, or while he washes his hands. He can look at the world from a different point of view. Nobody never encouraged us to help him to walk, until all the work was done. Now Juan's legs receive a different attention from the doctors, and he is training to walk with a walker.
We learnt about Rossmary Crossley's facilitated Communication, and used many of her exercises to release his arms. We could understand a lot of gestures we did not before.
Through bibliography we learnt about IT, and after a visit to Great Britain he got his first switch and programmes for the PC. Now he has access to toys, radio and tape recorders. He has a simple one message communicator. He uses MayerJohnson cards on a board to express choices, emotions or to tell others about events. He has learnt he can have control on the environment by other means than crying. He has developed his personality and his sense of humour, he shows clearly what he likes and dislikes and he is happy and willing to express himself most of the time.
After some months, thanks to the progress he made with all these opportunities we had, Juan was assessed at the only IT Centre for Alternative Communication that works with children with complex needs in Argentina. Now Juan has a plan and we work as a team with these therapists and his teachers. In 2000 Juan entered a school for blind and visually impaired children because there we found teachers that wished to work in this direction He goes once a week to a mainstream school where he shares music and art classes. This is the first time that Juan's educational programme is not entirely in his parents' hands.
JUAN AND THE THERAPISTS
Although we could always choose good therapists (Physical, ocupational and speech therapists), we felt that there was a mismatch between what he received at the therapies, and what we felt he should receive. They proposed some activity to him, expected him to do something established, he did not do anything, and they said: "he cannot" and they did not proposed anything else. I must point out that he always had very good medical care. Most of the therapists were paid by the family.
Therapists never encouraged us to work hard with Juan during the first years. We chose the best therapists we could, and the paediatric neurologist always helped us to do so. But therapists always remarked the sacrifice we did for Juan. We never thought we were scarifying anything. They asked us not to forget our other kids. We thought that all our kids would have the best we could afford. We told our children that anything we did for Juan showed them what we could do for anyone of them in need. I resented the therapists' compassionate looks: we knew we would not feel disappointment, as we were not expecting anything else that the best life for each of our children. And who knows what the "results" are to be.
JUAN AND SPECIAL SCHOOLS
I have mentioned that Juan's first experience at a special school suggested that there were no worthwhile plans for children like him, and that sooner or later he, like many other children we knew, would be left out of school.
When Juan was 8 we thought that he could not attend a kindergarten indefinitely, so during 1999 he was assessed at the only public special school that could accept him. He was assessed during 45' sessions, once or twice a week (some weeks he would not have any session) during two months, with unknown therapists in an unknown environment and without his parents. Afterwards the interdisciplinary team considered that "his motivation was absent", that he was "a multiple disabled child with 7 months of intellectual development " and that there was "no pedagogy for multiple disabled children" They claimed to know about this subject, as they had had the opportunity of managing an experimental curriculum for multiple impaired children and it had become clear that they could not learn anything. They proposed to have him at school for an hour and a half twice a week to see what "he showed to be capable of". We considered that this assessment was an autoprophesy that told more about a working style than about Juan, and decided not to accept it.
Juan is not a formal student at this school as visual impairment is not his main impairment. He is not formally "integrated" in the mainstream school: he is a "visitor". For the records of the Department of Education, Juan is not attending any school. They would probably give him no chance of attending a special school, and they would certainly not accept his participation in mainstream classes.
WHAT HAPPENED TO US THAT WE HAVE TO BE HERE NOW
Laws, rules and international Documents.
We noticed that many school aged children were excluded from special schools, because teachers said they could not learn any more. There were even children that were not accepted in school after assessment. We had to discover why these things happened and if it was right or wrong that this happened. I got in touch with the Argentine National Federation for Mentally Disabled People (FENDIM) and started to read about disability, but the articles I read did not talk about Juan. Until I discovered the term PMLD through MENCAP's leaflets, and though it is a way of labelling people, I could search in this direction (books, articles and Internet) and started reading and learning things that changed our life completely.
We also started to know international Documents, and to discover the value they have for us. We know that every child needs at least the following:
We met very interesting and interested people and formed a group of committed specialists that studied the rules of the Department of Special Education of the Government of the Province of Buenos Aires, National and Provincial Laws and International Documents. We have got the support of local non profit Associations as well as the National Federation (FENDIM), and Inclusion Interamericana, and we are now presenting our demand before the authorities.
The exclusion from education has been faced as a problem of human rights, and the awareness about this situation is spreading among parents and other people in the community.
Working together for other children
When we were sure that Juan was improving his skills for communication as well as his behaviour, his abilities to show cognitive progresses and his social skills, we started to share what we had learnt with other parents during informal meetings, through collaboration with the only non profit Association for children with very complex needs in La Plata. Both of us have different tasks. I am working as a volunteer at their Day Center for children excluded from special school. I shared all the information I had gathered with the carers and therapists. We are taking the first steps towards sensory stimulation, communication, and incorporating IT for these purposes.
We are working on the idea of assessment and goal planning, development of a curriculum, the importance of planning and keeping adequate records. But above all we are establishing the certainty that every child is educable and that apparent failures are challenges to the teacher's creativity and imagination to make tasks more appealing or to divide them into more simple steps.
But I know that not until every child's rights are fulfilled and equality of opportunities are real, will each individual child and adult be safe.
PROBLEMS WE FACE
- We have to learn everything about how to defend human rights, about the forums where we can report violations or where and how to ask for help.
- Governments seem to be very little committed to the respect of human rights, in particular to the right to education that every child has.
- It is difficult to obtain the documents with the regulations that rule schools.
- There are no qualified teachers and professionals to work with children with severe and profound and Multiple intellectual disabilities.
- Parents' organisations have economical difficulties. Thus they depend on the relationship with members of the government for subsistence. This fact determines a low capability to fight for the rights of its members.
- Organisations are too busy obtaining resources for their own survival.
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