Meeting in Troyes, department Aube, France: A party must be broken off at its peak.

 

Reading time: 12minutes

 

‘In France, you have to fit into a small box. If you don't fit in it, that's wrong, even if someone has talents.'

     

We arrived at our next destination almost unscathed. Almost. The pre-paid card worked until the border. After that it was important not to drive in the wrong direction, because then maps would get lost. We had another problem. Steering the bus became more difficult every day. There was something wrong with the power steering. The many roundabouts became a real challenge.

 

Our accommodation for this visit was a bungalow on a campsite. It turned out that this campsite was built against a mountain and we were given the highest house.

 

‘It isn't a problem,' the friendly campsite owner explained, as I looked a bit apprehensive at the narrow winding path that climbed up.

‘Just turn right up the mountain and when the path goes down steeply, take the first path on the right.’

What she did not tell us was that on that point our (extended) bus was on a 45 degree slope, with a wall on the leftside and on the right nothing, and that you could only get in backwards. And all that with a steering wheel that wouldn't turn. I had to do this a few times. Looking for a garage, visiting a beautiful care home in a village near Barcelona. And then back to the garage.

 

We had a beautiful view, though. And the garage could repair the car. It was a load off my mind and my purse. A whole new part had to be put in. The friendly garage owner showed it to me when I came to collect the car.

Cato discovered shopping in this tourist village and acquired a new look. We had a lovely afternoon together in the small streets of Calella.

 

But France is now behind us, so it is time to post about our visits there. Our first visit was to the Autism Association of the department of Aube.

 

Introduction

 

France has about 12.5 million children of compulsory school age.  School is compulsory for children between the ages of 3 (the year a child turns 4) and 16. After that, a child has to follow 'a training' until the age of 18. This can be an apprenticeship or vocational training. In order to avoid repeating classes, a pupil in secondary school can follow subjects at different levels. 

In France, all children have the right to attend a regular school. Since 2005 the law for inclusion of people with disabilities in education and society is in force in France and thus the policy is that all children with special needs go to regular education and not to special education.

 

Home education is allowed in France. So, just like in Belgium, it is difficult to find out how many children drop out of school and how many children are deliberately homeschooled.

 

Children who claim extra support have always received an official diagnosis for this. 3% of all pupils of compulsory education in France have such a diagnosis. According to the official figures, which do vary slightly, almost two thirds of those children attend a regular school. Within the regular school, a distinction is made between children who spend a lot of time in the regular class and children who use the special class (ULIS, see further).

 

To support these children in education, France has made all kinds of provisions.

For example, France has a National Strategy for Children with Autism and Neurodevelopmental Disorders.

Since 2018, this commitment has ensured that (some) primary schools and kindergartens have a special care class for specifically these children. Such a class has a maximum of six pupils. The teacher has special training and all kinds of specialists are attached to such a class.

If you realise that approximately 1% of all the children have (a form of) autism and that there are 6 million primary school children in France, it is easy to calculate that 10,000 such classes are needed.

The Ministry hopes to have 200 classes available by 2022. Not every child with autism necessarily needs such a class, but still. There is still a lot of work to be done.

 

In addition to this care class, (some) primary schools have a ULIS class. There were about 5000 of these in primary schools in the 2019-2020 school year. But these classes are also meant for students with other kinds of learning problems.

 

Children with disabilities are entitled to an individually adapted curriculum.

 

Because of the right to education for all children in a regular school, every department in France is obliged to set up a service for (the support of) inclusive education in regular schools and to provide local support to schools and parents.

 

One measure to achieve the goals is the ULIS class (Unités localisées pour l'inclusion scolaire). In a ULIS class are children with a diagnosis and all kinds of problems, who need special guidance. A teacher with special training is always attached to such a class. Pupils in this class follow the education according to their individual programme. They can always decide to join the 'normal' class. In secondary school, for example, this could mean that a pupil follows the maths lessons (occasionally) in the ordinary class.

 

I cannot resist telling you about a little -fruitless- effort I made years ago. My youngest son Steven was still at the secondary school of public education in Rotterdam. I was a member of the joint participation council of the public secondary school and therefore had contact with a rector. This rector asked me to bring something to the council. In return, I asked him for a favor. I wanted to set up a special class for the new, first-year students with an (autism) disability at his schools. I had written a whole plan for it. My idea was not so crazy at all, said this rector, because directors of his schools had been on a study trip to Great Britain and had visited something similar there.

 

I kept the fire warm for a while but of course it didn't work out. If it had worked out, I would not be travelling through Europe now, but simply working hard on this beautiful plan.

The most serious obstacle came from the people who work at the schools, the rector said. They are very difficult to move for something new.

People can get frustrated or angry about that, but it is actually quite understandable. Teachers are busy. Too busy. For such a plan, the conditions must be right for them too.

 

I would love to visit such a school with a ULIS class. How does it really work? Is it the solution? A solution?

I am going to ask my hostess in Troyes.

 

Petra Schlos, president of Autisme Aube, managed to free up some time on Saturday to meet me and talk about education and autism in France. She is mother of a son (22 years) with autism. Her son doesn't talk, but he does communicate. He can communicate via a tablet but actually he hardly uses it because his parents and sister understand him anyhow.

 

We have arranged to meet in front of the beautiful Cathedral of Troyes and, to my great joy, we settle down on the terrace that I had been longing for all week.

 

She opens our conversation with: ‘Prepare yourself because I'm not going to tell you anything nice.’ In France, a lot has been arranged on paper but the actual implementation leaves much to be desired, she makes clear to me. In the course of the conversation, a little diamond nevertheless appears, but I'll save that for later.

 

In France, the parents are by law in charge. In the end, they determine what happens to their child. Petra does have a comment to that fact. You have to know the law yourself and be able to fight for this right, otherwise it won't work. We also know this phenomenon in the Netherlands.

 

(In the Netherlands too, parents have to enforce the law. With regard to children who are a challenge to a school, this means by definition that the law is not enforced unless the parents fight for it. The result is often: 'Yes, you might be right, but the relationship has now become so bad that you'd better go and find another school.’ I must add that the schools in the Netherland face an impossible task.)

 

In France, just like in Belgium, home schooling is allowed.

It is supervised. Petra has been homeschooling her son since he was 12 years old. She had to report once a year on the progress and also explain a lot each year to the two inspectors who actually visited her and unfortunately appeared to have little knowledge of her son's disability. For example, she had to explain why her son had not yet reached a certain level, although the boy does not talk. Needless to say, she found this very tiresome. There was no alternative for her child. The paperwork that comes along to be allowed to homeschool is also a big burden.

 

I ask her about the ULIS classes (see previous post). She tells me that these are meant for children who can handle a certain level. It is not the case that every child is welcome at school. Moreover, children with all kinds of problems are often placed together in such a class, probably out of force majeure. For example, children who have fled their country because of a war situation and who must integrate.

It is up to the school in which way the ULIS-classroom is set up and which students are admitted.

Petra praised two schools that have a special ULIS class for pupils with autism. I am going to try to meet up with one.

 

What about a personal budget or home education support in France? Parents who educate their children at home do not receive extra support like money or expertise from a school.

France also knows the phenomenon Personal Budget but it is not much, Petra says. It is quite a hassle. You and your child have to go through an intensive process of tests. A file is created. Then it is determined how much your child is disabled and an amount is allocated on that basis. The maximum amount is around €1,000 a month, but almost no one receives that.

 

Petra says: She and her husband lived in Paris. When they came to Troyes 15 years ago, there was nothing at all for children like her son. She then set up an organisation for ambulatory support. After a while, the government thought that what they were doing was very important but that it could only continue if it was taken over by a large recognised organisation. And that is what happened. She is satisfied with the organisation that took it over.

 

From the time her son turned twenty, Petra received a small income for the care of her son. ‘You can't live off it. It is a financial sacrifice when parents decide to take care of their disabled child themselves’, she explains. She  French government prefers children with disabilities to be institutionalised.

 

Petra says that a few years ago, in 2012, a complaint was successfully submitted by a parent organisation (Vaincre l'autisme ) to the European Council.

 

‘The Committee takes note of the definition of Autism given by WHO which regards it not as a temporary disease, which could therefore be cured, but as a disability. This means that the persons concerned must be educated in the community and that human assistance must be arranged for all or part of their schooling.’

AEH

 

The committee does mention that France is well on its way with the plans on paper but that the implementation leaves much to be desired.

 

There is a little diamond as I mentioned before: Petra's son simply went to primary school. He was not in the special care class that primary schools sometimes have, no, just in the classroom, with the other children. He had a personal assistant the whole week but besides that, the other children in the class took care of him. He was never bullied. He loved it at school. He was sometimes a bit spoiled. ‘If he held out his arms, the children helped him out of his coat,' Petra says, laughing.

 

What did that class look like? I ask myself. Why did these children have the space in their hearts to take this boy into their midst? What does it take to achieve this?

What do you think?

 

When secondary school came in sight, Petra and her husband made a firm decision. After they had, of course, explored the possibilities and the willingness of secondary schools.

 

‘A party must be broken off at its peak', Petra said. I grew up with that expression too.

Her son had had a wonderful time at school. She wanted him to keep that memory. Secondary school would be an agony and she and her husband did not want to expose their child to that. They had a choice. Because they knew the law and were empowered enough to use it.

 

But Petra also has worries for the future. She would rather not think about it. They are the same worries I have. Where can my child live in the future? We both search in vain for a place where there are people who understand our children, where there is equality and friendship and above all: where the door does not close, where they have the same freedom as at home. Their own home.

 

‘In France, you have to fit into a small box. If you don't fit in it, that's wrong, even if someone has talents', is the quote from Petra that stays with me. I can only agree: In this world, you have to fit into a small box.

 

 

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What do I take away from this visit?

 

The little diamond: a school that is apparently so pleasant for children that children automatically include the disabled child in their midst. What would be needed to make that happen?

 

A personal assistant. The whole week. The starting point must be that the child enjoys school and that there is no performance pressure from the school (government). If a child cannot cope with the hustle and bustle of the classroom, or has to keep up with the class, why would a personal assistant be useful? What could he or she possibly do to change that?

 

ULIS classes. A safe class where learning continues. Where you get help from teachers, where your needs are respected. And the freedom to go to a regular class at times where the subject that interests you is taught. What would it take to make children with autism move through secondary school in freedom (because they feel safe)?

 

The special care class in primary school. This is a class of up to six pupils with specialists attached in addition to a teacher with expertise. What should be the task of these specialists?

 

A complaint to the European Council makes sense. It is taken seriously and it turns out that it is not impossible to prove that a government is doing too little.