A Pearl in the French Landscape

Reading Time: 12 minutes

 

‘You have to guarantee continuity. Without that, these people will lose their bearings and they will take refuge in withdrawal.'

 

 

Yesterday, Cato and I were on the road for exactly five weeks. My spirits don't want to brighten up yet. Of course we have nice moments Cato and I. The surroundings are beautiful and new every time, the encounters fun and interesting.

 

But the work for Acato just goes on for me in the meantime, and so do the worries. We are behind again with the salaries. Because the personal budgets that have been promised are coming in too irregularly. A couple of thousand euros are open. And we are only a small centre. The government policy of cutting back on the one hand and setting high quality standards on the other (the same standards that apply to a contracted institution) means that no reserves can be built up. We need reserves to be able to cope with such interruptions in payments, but also to be able to ensure the continuity that people with autism so desperately need.

 

I read in Saturday's NRC(daily newspaper) about a school in Nijmegen for disabled children that could not survive without an injection of 1.5 million from a generous donor and the dismissal of a third of the staff. All thanks to the law on appropriate education that was supposedly not an austerity measure.

 

Acato provides a safe haven for young people with autism. Young people who have been 18, dropped out of school, and are overworked and unhappy, knock on our door for help. The last sentence states exactly the two things that deny an organization like Acato the right to exist.

Young people with autism who have dropped out of school have years behind them filled with miserable experiences. These young people don't just flip the switch for themselves just like that. They have tried to finish school. They did their best, but despite that, they had to leave. Away from school without a diploma, without chances to continue. Most of Acato's students first spent a long time at home before they became eligible for day care. During that time, the government invested in therapy, coercive treatments, in admissions in institutions often. And then they turn eighteen and it's no longer necessary. Then school is no longer compulsory and everyone takes their hands off them. Large contracted care institutions do not have day care facilities that can help these people on their way. The government has its hand on its till. These young people have no chances whatsoever.

 

Acato does provide appropriate help. The troubled young person who wants to make use of this must first negotiate with a government official who is not allowed to spend too much. Then the young person has to negotiate with Acato to try and buy specialist care for the money they are awarded. The allocations are all different. One time a young person receives ten euros per hour, another time only six. The government official does not talk to Acato, because that could influence the official's objective assessment. Nor does he look at Acato's rates. No, the amount the young person is worth is determined on the basis of the little talk the consultant has with the troubled young person.

 

Acato was founded to help young people with autism to find their way in life. As good as it gets. And so we can't say to such a young person: ‘Go away, you don't have enough money.’

We also can't put ten young people with autism together, because it was the group experience that made them drop out of school.

And so Acato will probably disappear from the stage in the long run... because it is not sustainable like this.

The only continuity that remains for these young people is the certainty of having been abandoned.

 

 

A pearl in the French landscape. 

 

 

 

‘You have to guarantee continuity. Without that, these people will lose their bearings and they will take refuge in withdrawal.'

 

Hidden in the landscape there is a large old farmhouse. Since 1973, this is the home of the pupils of l'IME la Bourguette (Medical Educational Institute). The long, narrow road that leads to the building is partly tarmacked but turns into a sandy path halfway. I have an appointment at half past three. I drive slowly along this rural road, which is unfamiliar to me. The beautiful surroundings bring me to lyrical thoughts for a moment, but I am soon brought back to reality when I look in the rear-view mirror. A taxi-van sticks to my bumper. Half past three, Friday afternoon! Ah, some things are the same everywhere. The children are going home. Four five taxis are passing me after I stopped on the roadside.

 

 

 

Julie Combet, the psychologist in charge of the service temporary home (I explain this later), is waiting for me at the entrance. We sit down somewhere in the shade.

There is a lot to tell about this wonderful institute that has been here for such a long time, and now that I have to write it down, I hardly know where to begin.

 

Some 34 children make weekly use of the educational activities in and around the building. The 30 children who also spend the night here are from about twelve years of age and older, says Julie. There are also younger children daily (four per day), but they go home at 16.30 in the afternoon.

 

The aim of the institution is to help children with autism with their general development, to learn to take care of themselves and manage to live as much as they can in society and community. For some of them it means they learn what it takes to be able to work for an employe in a sheltered environment.

 

Over the years, the institute has managed to embed itself in the local society. Some companies around the village of La Tour d'Aigues employ adult residents of this institute for internships. In the surrounding villages there are also houses where the adult students of La Bourgette live with guidance but also with a large degree of independence.

 

Most of the pupils of La Bourgette are severely autistic, some of them cannot speak, but still the door doesn't close here.

The groups of pupils are small. Two to three children per group, sometimes with two supervisors. There are different classrooms. There is a lovely kitchen that looks like the kitchen of grandma fifty years ago. Cosy, warm, with color and all kinds of pots and utensils on shelves, a lived-in table in the middle with wooden chairs around it. Here, cooking and baking are taught in preparation for working in a restaurant. For the younger children, it’s sa nice place for sensory experiences.

 

When I ask how the pedagogues and social workers communicate with the children that do not speak, Julie answers: ‘Of course we talk to them, we put words to explain what’s going on around them and what they feel. And besides that we use Makaton.’ This is a small form of sign language. The tablets are not very popular with the social workers and the children, she explains. Petra in Troyes also told me that her son would rather explain something with hands and feet than with a tablet.

 

In another classroom, small and homely is decorated with of all kinds of pictures with name cards, the time, the seasons. It's all depicted on the walls. Montessori materials are in the open shelves. A table with colored chairs barely fits in the middle. A maximum of three children are taught here. But,' Julie explains, 'they are also outside a lot. Every day, in every kind of weather.’

 

 

 

And outside are the chickens, the vegetable, flowers and herb garden, there are horses and donkeys to look after, it’s an animal mediation activity. The children get out into nature every day and learn about plants and food, about animals, about life and the unpredictability of nature, such as the weather. They learn to adapt themselves to change.

In the evening, the residential children cook together with the social workers in their own house. They pick the food from the garden and they go shopping together. 

 

 

 

Julie immediately understands my question about ‘force and training'. No,' she says, 'we never force them. It happens that a child says no for a long time and turns away when you try to interest him in an activity. But eventually it comes naturally. At a sudden moment, the child takes the step on his own. We remind him than his place in the activity.'

 

There is a small gym for therapeutic movement lessons, but for other sports such as swimming, climbing and basketball they visit clubs in the area. The same applies to music lessons at the music school. On the grounds, there is a circus tent open to children of La Bourguette and also to schoolchildren and circus artists. 'It’s a great meeting place!' Julie says.

 

They have a cooperation with the local primary school. ‘They come at l’IME with their pupils to learn in the vegetable garden and the other way around some of the younger children go to the primary school two half days per week,' says Julie.

 

In the residential part of the complex, the children live in groups of six, accompanied by four social workers. One of the supervisors spends the night at the house. The children all have their own room. Some pupils live in the residential facilities in the surrounding villages. ‘It is sometimes hard for the supervisor’, says Julie with a wink. 'Some children tend to wake up at night.'

 

L' IME also offers places in a temporary home for children to relieve their parents. In France parents of disabled children (and adults) are entitled to 90 days of professional care for that purpose and for respite. At l'IME, two weekends and two weeks a month and some weeks during the summer holidays, children can stay here to have, I can imagine, a wonderful adventurous time.

 

And then there is their great pride: L' Auberge du Grand Réal. This is a farm in the neighborhood of Bastidonne, with a beautiful restaurant and a changing menu. The 100-hectare farm supplies the products for the kitchen. On this farm and in l'Auberge du Grand Réal, the adult students who discovered and developed their interest in this profession at l'IME la Bourguette, found their jobs.

 

L' IME la Bourguette began almost fifty years ago as an initiative of inspired people. In the early years, the work was largely done by volunteers, and including parents of autistic children. Money had to come from generous donors. They eventually got the building in loan. Now the care is paid for by the government. Care is free in France', Julie says. ‘The parents don't have to pay anything.’

‘But,' she says, 'the way this started out ... it wouldn't succeed now.' I understand her without explanation. Starting a project like this now would cost millions. To start with: to many rules and regulations on buildings where children with autism would be allowed to live make it unaffordable. 

 

Laws and regulations have long since ceased to protect people and instead have made life, human life, impossible. These are my thoughts.

 

La Bourguette is an institute that does what we all dream of. It recognizes children with serious disabilities as equal human beings and helps them to gain a place in society. And they succeed in doing so. For almost fifty years, La Bourguette has shown that their approach works. In the description of their history on the website, one of the founders, Mr Soleilhet, says (in summary): 'You have to give the guarantee of continuity. Without that, these people will lose their bearings and they will take refuge in withdrawal.'

 

Julie explains that there are also concerns. If no more houses are built for the adult students to live in, the flow through l'IME la Bourguette will stagnate.

 

I ask Julie who is responsible for those houses. ‘If we want to open new homes we need state funding’, she explains.

 

‘Do you think the government really appreciate what you are doing here?’

 

’ I don’t think they fully understand the problems people with severe autism encounter in life. These days they want children to sit still, do their work and be trained. Our expertise is no longer supported’’ 

 

When? I ask myself. In what world? ... Is the expertise of 50 years of experience going to win from the political delusions of the day?

 

 

Open the website in Chrome and it can be translated in the language of your choice: www.bourguette-autisme.org

 

 

 

 

What will I take away from this wonderful visit?

 

 

A colorful environment is inspiring, also for children with autism.

 

Not by force, only by its own free will, a child will blossom.

 

The door is open. The grownups live their lives as independent human beings.

 

An institute where the education and training of children with autism is life-wide and long-lasting pays for itself. It is good for society and for the individual.

 

To achieve the above, an institute must embed itself in society. That offers opportunities to the students. If you would start an institution like this now, what would be the best place to do this? In the city or rather in the countryside? Or somewhere in between? How do you involve companies in such a project? Would it be possible in the Netherlands?

 

‘You have to guarantee continuity. Without that, these people will lose their bearings again and they will take refuge in withdrawal.'

 

About communication: Makaton: www.makaton.org

 

You have to teach children with autism in very small groups. A lot of individual attention is needed.

 

In several places where I have been, Montessori material is used.

 

(Montessori devised her teaching program around 1900, when she was working with mentally disabled children. She decided that her method would actually be good for all children.

The original method... let a child play, discover, try out in freedom and the teacher observes and learns from the child. The teacher gets to know the child and helps only when it is really necessary. It is a beautiful method. It is a way of life.)