Joys and Sorrows
From March till August 1995 our four students (formally known as ‘unteachable’) made tremendous progress, and not only in their achievements in reading, writing and math, but also in their skills to communicate and play together. Gradually, they are turning from isolated, hidden from other people and living in their own world autistic children into happy autistic children who enjoy their right to live a ‘normal’ life.
What is more, since 10 March our children not only have learned a lot, but also have taught their teachers about possibilities to perceive and understand the world differently. We would have never thought that what we think is obvious might be interpreted differently and be absolutely logical as well. For example, Vita likes her classes very much but has recently stuck with maths problems. One day we were counting coloured pencils together and she was very happy to point at each while reciting ‘One, two, three, four, five, six, seven!’ Great! So my (obvious?) question follows:
Vita imitated me and drew a circle with her finger, looked at the pencils then at me and said:
Vita drew another circle around them and:
God bless this girl, she patiently pointed at each pencil again and ‘counted’ – ‘One, two, three, four, five, six, seven!’
Feeling absolutely useless and mentally ‘disqualifying’ myself from the teaching profession, I grabbed all the pencils from the table and started putting each one by one in front of the girl:
But Vita furiously grabbed pencil No 2 and ‘corrected’ me:
It suddenly dawned on me. The girl was not counting, she was ‘naming’ each pencil according to the ‘labels’ (numbers) under which I introduced them to her in the beginning of the lesson. The red pencil that had happened to be the first in the row, got the name ‘one’, the green pencil was ‘labelled’ ‘two’, while the yellow pencil I tried to’ disguise’ under the name ‘two’ was actually known to Vita as ‘six’. It was perfectly logical. How could all the pencils have the same name as the yellow one?
It was another lesson the girl gave me. She was so keen to learn and to understand what I was trying to teach her, while I was failing her. How could I be so stupid and not see the obvious?
So our next maths lessons were about ‘oneness’, twoness’, threeness’, etc. It worked!
The troubles began already in the beginning of August. As we shared the room with the hobby group '‘straw', in August they began to lay in a supply of straw to get dried on the floor of the room. Our children could not understand, why they were not allowed to walk on the straw and had to sit at the table for more than three hours. Besides, there was a stinking smell in the room. Open windows did not help much. And when Dima ‘escaped’ from the table and hid in the straw, we were politely asked "to leave the premises".
Since March 1995 our experimental pre-school for children with autism has moved 7 times. The reason? The Social services who let the parents use a room in their premises could not tolerate the presence of these ‘unmanageable’ children for more than a few months (sometimes – weeks) while they were working with thousands of "paper children" (lists of disabled children shoveled about their desks, and not always politely asked the parents to ‘leave the premises’.
Alas! The "specialists" did not hasten to help. The speech therapist got irritated with the children because their attention span was very short and they "refused to co-operate and did not look" at her. Her conclusion after the first session with our four children was: "It is impossible to work with them!" The other "experts" in rehabilitation work were very busy – they had hundreds and hundreds of disabled children (= paper information about them) in their files. (How much we are fond of great figures! We cannot understand that it is impossible to help all the children without helping every individual child. And it is much better to help 3-5 children than to do nothing for a hundred.) Again we were too naïve to think that "rehabilitation of disabled children" was everyday work with them in order to help them become independent in their life and be included in the community. It was our understanding. However, the "specialists in rehabilitation" saw their work quite differently: distribution of humanitarian aid once every 5 years and charity performances once a year. The rest of the time was spent on paper work and all sorts of accounts for "people above them".
They explained to us that our children prevented them from helping hundreds of children with disabilities (according to their list).
- Your children are… very noisy, you know. We cannot concentrate on our work. You have only 4 children and we have hundreds, if not thousands. And you know, we are not able even to count them with your children around.
Yes, indeed, it can take half a working day to count children in their card index. What matters for them is all the paper work – accounts, reports. Now we can imagine how much work they are doing. But why is this service called ‘rehabilitation of disabled children’?