12 Köpfe - ein zeitloser Kalender

Internationale Projekte

Comenius project: Landstuhl / Sant Boi / Deinze.
1999-2002

During 3 schoolyears, we made a common project about quality of life for polyhandicapped children.
Participants from the multigroup were: Carlos and Barbara from Sant Boi and Philip from Deinze.

During the first year we made a questionnaire about the personal experiences of the professionals.
Her you can read the résumé of the reports from the 3 schools.

Beside sharing knowledge and methods, we also take a closer look at the experience. We all know that in our contacts with the deeply multihandicapped child we are confronted with sometimes rich, sometimes difficult situations and also with our own vulnerability.
In the first year we have collected information about this, so we can organise interesting discussions in the following years.

In the 3 schools, we asked the following question to the staff.

In your experience with the deeply multihandicapped child, which aspects are difficult and which make you grow ?

It is striking to see that what is enriching and what is difficult, are the same in most cases, these are two sides to the same medal.

When we can get passed those seemingly contradictions, we enrich ourselves personally. Levers are : personal growth, teamwork (with parents as partners) and learning. Then we can get on with the confrontation of essential questions of life, in an open way. Nevertheless, the difficult sides stay difficult: we have to search continuously for the right tracks.

In this résumé, we distinguish 7 items. For every item, we bring together the most important remarks from the 3 schools. In some cases we add a specific remark or question, that might be able to help us in our thinking about the subject. We don't stress anymore on the contradiction difficult-makes grow, knowing that this aspect will come up in a spontaneous way during the discussions.

1. Communication with the child.

• Communication depends on very small signals: a smile, a way of breathing, a little more or less tension, a discrete sound. The interpretation is delicate.We are often afraid that we interprete in a wrong way. It is very hard to place ourselves in their experience. Their behaviour depends on a wide range of aspects (health, memory, envirement, ...). Most of those aspects are so basic, that we have the tendancy to forget them.
  But once we get through to our children, it is a big fulfilment.
• To create adapted communication facilities requires a lot of skills from the teacher, especially with autistic children. The approach is mostly individual. The time plays a crucial role in the communication. It can take a long time before we see small steps from the children.
• We learn new, different ways of communication. Most of us learn to stress more on observation.
• Some of us are disappointed about the apparently shallowness in work. Some children just need to "sit on the lap". Did we study all those years for such a simple things? Is this all there is?

2. Teamwork.

• It is not always obvious to find a fluent organisation in a team. It can be hard to agree every month or year on a right timetable for every collegue. Quarrels about this matter sometimes spoil the workatmosphere for a long period.
• There can be big differences in teams. Some collegues can be burn-out or don't like their job or might be less interested, Some can have too high expectations and can not accept "mistakes" nor from collegues, nor from themselves. In both situations the sharing of responsability can be difficult.
• Teamwork is fruitful when the collegues share the same objectifs. Then, it becomes obvious to help each other in difficult situations and the sharing of one's own subjective experience becomes rich and stimulating. It also helps to overcome the traps of the interdisciplinary collaboration. When we know that a collegue works in the same direction, it is easier to invite him in our own area or to find the courage to go in the area of the collegue and to ask questions.
• Some teams like the freedom to create an own culture, where the children can find themselves, very much. However, society often does not understand our work. It can bring us down to hear remarks as "why teachers for those children?", "is their life meaningful?".

3. To deal with pain.

• It is hard when we are not able to comfort the children, to calm them down in times of big excitement or in self-wounding behaviour.
• It is a hard confrontation when we are not able to soften their pain.
• Those confrontations give us feelings of uselessness, of guilt, of not doing enough.

4. To deal with death.

• We feel ambivalent when children are near death: we feel that we have to let them go (and in our minds we often accept this), but it is hard to say goodbye.
• It is very hard to accept that children can suffer in those moments. An adequat palliative approach is necessary. It requires a high level of integration between professionals (the doctor has an eminent role) and the parents.

5. The physical aspect of work.

• The education of polyhandicapped children is a physical work. We have to carry the children. To touch is important. Daily care is for a lot of the children the most important moment of the day.
• Bodywork is okay when we are in good shape: when we are healthy and when we feel well in our skin.
• A lot of collegues suffer from problems in the back or in some articulations: wrist, elbow, shoulder. We need the right materials to prevent that.
• Working with polyhandicapped children needs a constant high level of alertness.

6. The philosophical depth.

• The polyhandicapped child confronts us with the essence of life. They make us think about what really matters. We learn to appreciate the little things in life. We learn to see the relativity of our own problems, sometimes even too much.
• We are confronted with ourselves, with our vulnerability, with our dark sides (egoism, rigidity, ...).
• We have to learn to deal with feelings of guilt. We can have the impression that we don't do enough for the child. It is not easy to conciliate the needs of the children and our personnal balance in a good way .

7. Parents.

• Collaboration with parents can be very different. The objectif is to be partners, real partners each with his specific characteristics. When we succeed the partnership is fulfilling and stimulating for a team. But it can also be very difficult, when parents don't understand what is necessary for their child. Or when they don't agree with what we think is the best.
• It can be very painful to see how some families suffer or get distressed.

How did we work on this items?
We discussed 1 item during each visit. The receiving school prepards the discussion. Each school prepared his contribution.
In the preparation we asked for stories, descriptions more than ideas for the organisation. How was it to be confronted with this item. What was stimulating, what was difficult? How could I deal with that situation? What precisely made me grow? What is still difficult?

You can read an excerpt of the preparative reports in this map.

And we included also an information about the common exposition, we made in the end of the project.
We are particularly proud about the manifest: "about our children".

report: Philip Vanmaekelbergh.