Article NRC Handelsblad 6 January 2005

Do you know what a word web is? I learned it from my daughter, Thiandi. She is, as everyday, upstairs in her room. It is a regular day and she gets her lesson Dutch language by Marije, first year student psychology. Making a word web means you choose a word and put it in the centre. Then you add words around it that you associate with the central word. All the words in the web are then used to make a story.

I follow her example and make a word web. In the centre is “school”. Around it I put disability, right to learn, discomfort, rejection, isolation, powerless, hope and welcome. The last, because I am an optimist by nature. I am sure that somewhere there is a school principal who reads this story and who will think: damn it, that girl Thiandi can come here; we'll regard it as a challenge and a benefit for our school if she comes.

Thiandi is 14 years old. We have two other children, Jochem and Emma, 11 and 9 years old. This story is not about them. They are good humoured, white, smart; so every school will accept them gladly. De eldest, also good humoured, also white and also smart _ but because of her periphery looking, slow moving and not talking, at first impression different _ is nowhere in the Dutch educational system welcome. For only two years she was welcome as a pupil in a regulary elementary school; the @rchipel in Almere. It was excellent there, but Dutch law states that every pupil should leave elementary school at age 14.

In Almere and broad surrounding there is no secondary school that is willing to accept her. We enquired broadly but in Lelystad she cannot come, nor in Vlissingen , Middelburg, Groningen , Haarlem , Amsterdam , Zuid-Hollandse Eilanden, Gelderland . A Christian school in Enschede used an original argument: not a child of two mothers. All other schools stated: too disabled, too difficult to communicate with.

That vision contrasts with our reality. Thiandi started with her English lesson after the word web. After that she will continue with technique, science, and history (with Erik, an other assistant hired by us). This evening she will do Italian preferably with our two younger children in case they will all go to Italy again. Sometimes we play Lingo or we'll read Arnon Grunberg.

We work with books used in first class of a secondary school in Almere. The management let us sign a contract which states that we “cannot derive any rights from” the fact that the school sells us books.

At this point I should explain that until this summer no one knew that Thiandi knows and understands so much. Because she can not talk and does not control her fine motorics so good, it is not so odd everybody took her for mentally retarded. From birth there were complications and medical mistakes and finally a too vague diagnosis: brain damage. What should one do with a child who will not develop automatically?

Two rehabilitation centres for children (in Amstelveen en Huizen) refused to accept her for their programmes because they regarded her as mentally disabled. Odd, because one could not measure that. Also odd, because if one wants to make motorics better, one should train the body and that applies just the same for someone who can not think too well. Beside that, cognitive development will be set into motion partly due to development of motorics. It were the first bitter refusals before she was two years old and which we now still regard as stupid and discriminating. We were referred to an orthopaedic daycentre which had a waiting list that would last a year. If that's your situation, you will find your own way.

We searched for therapies (Bibic/Doman, Sonrise) that worked. With the help of dozens of volunteers she practices years at home, up until she could see, hear, crawl, stand up, walk, swim. She looks periphery, so there is seldom eye contact. She could not master talking. Communicating with pictures was troublesome. Her emotions though, she clearly showed. For everybody it was clear she prefers reading: if we let her choose from two or three books to read for her, she choose books that fitted her age. She laughed at parts with jokes. Other signals were so subtle I sometimes could not even describe, but to us it was unmistakeable: she understood far more then she could make clear.

When she was very young, she showed us she wanted to be with other children her age. We wanted her therefore to go to the neighbourhood school, also because then she would have less chance of being bullied at. Besides, we could not go to special education schools. They refused her all: to low cognitive level and up until two years ago they were legally allowed to say that. The prosecutor in Haarlem without asking our consent, relieved us formally from the duty to send our children to school.

Dozens of conversations we had with schools and teachers. We offered one-to-one assistance (paid for by a personal care-budget). We brought in three different (ortho) pedagogues who supported our vision that Thiandi profits from regular education. As a result she was, until she was 11, allowed to sit in as a guest some parts of some days at three different schools. Interaction between the children went well. She could not react easily, but absorbed everything. She did not look at you but she was glad to be there and every time we almost had to drag her from the classroom each time she had to leave the classroom. But always there was tension as well, because of teachers in school team who regarded her as too disabled and parents who said their children did not get enough attention.

After we were send out again we decided, tired from the continuous struggle, to enrol her and the younger children in Italy . All children with disabilities go to regular schools there. One drives to Italy , one rents a house, one enrols and “tutto posto”, ready. The school principal said: come 4 weeks before school starts, so we'll have time to arrange assistance.

It was a wonderful time for Thiandi. She participated in all classes: French, Italian, mathematics, science, biology. Did she understand? We did not know, but she found it marvellous. The boy in the group with ADHD became her big friend. She was accepted in school and in the village. Ciao bella, was also said to hér in the streets.

Wé had more trouble adjusting: learn Italian, Trix gave up work temporarily, I flew over in weekends.

At that time a new school started in Almere from which teachers and management were inspired by a international congress on inclusive education we organised two years earlier in Rotterdam . The school choose to accept children with severe disabilities. After a year Thiandi could come too. For the first time she could be fully part of group 7 and 8 in a Dutch school. There, still, she was regarded as mentally disabled.

Nevertheless her teacher Wendy and her assistant Marylin saw in this intensive daily contact what we

kept saying: she knows more than she is able to show us. She could come along with school camp, went along to the disco and to birthday parties. An evaluation report is written which says that not only Thiandi profited, but also her class and the two teachers. That is because one learns from challenges.

A year and a half ago we started our search for a secondary school, in Almere en wider circles after that. Everywhere: no, too unusual.

Last spring we met. on a training Partners in Policymaking (which I help organise with foundation De Toekomst) Mary Schuh. She is an American pedagogue in New Hampshire who has experience on inclusive schools with non-verbal children with contact problems. She told us about “facilitated communication”. It is a technique to physically support non-verbal children by which they are able to point to pictures or letters on a letter board. “She probably has learned herself to read a long time ago” she said when she met Thiandi at dinner.

Through Mary Schuh we arranged a short training with a professional at Syracuse University in the state New York . Already in the first session Thiandi started, after searching for half an hour for the right way to position her body, to spell letters on a wooden letter board. In the second session short sentences came and even a word in English. For the first time in 14 years, she was able to show what she knows and thinks by spelling.

It took us a few weeks practising and getting used, but soon we found that she is able to work at vmbo-level (vmbo is basic level of regular secondary education), that she not only masters Dutch, but is very good in English, and in Italian and some French. She is very interested in history. Recently we went to Sicily for a week for a holiday. Italians are so relaxed. They talk to her directly and she spells her answers in Italian that she masters better than I do.

Immediately we let the schools in our neighbourhood know, but they cannot and will not accept her. A suitable special education school can also not be found. A psychological test report was finished by the end of January: she is average intelligent.

This week she wrote: “why am I as I am?“

Our answer: “bad luck. Sometimes that's what happens and you have to accept it.” Then she wrote: “why is everybody afraid of me?” We said: “because people find you strange at first sight, because you don't look at them and don't talk. But you also know that when people know you for a few weeks, they are not anymore”.

And then she wrote: “I want to write how I am and who I am so they will know me”.

José Smits.