Exposé du branle à la fin du congrès
Head of the School for Special Needs of the School for the Sick of the University Hospital of Cologne
Good morning, ladies and gentlemen!
If only the metaphor of drumfire did not have such heavy military connotations! How I would have loved to use it as a bridge between the fantastic presentation we just watched by that group of young drummers to the keynote address I am about to give on this final morning of our conference. This congress here in Munich will go down as real drumfire in HOPE history. Not just because of the fantastic side programmes, that drumfire of classic to folk to rock. A real drumbeat was also heard in the wide variety of topics, the like of which I have neither heard nor experienced at a HOPE conference in all the 22 years that I have been involved in school management. This year a divide has been closed that was always latently felt. It was a divide as is sometimes known by close relatives who all bear the same family name, but at family get-togethers argue about who is really the most loved and legitimate child of the parents.
Who can count themselves as legitimate family members in the field of educating the sick? This question had divided us for a very long time. On the one hand, there were our colleagues working on the somatic wards and on the other hand, our colleagues working in the newer fields of child and adolescent psychiatry. Sometimes they seemed to be more like step relatives. Now here in Munich in 2010, a new era in the family chronicle has dawned. Since Munich, this divide is passé. We educators of the sick all see ourselves as teaching professionals for children and adolescents with learning difficulties resulting from sickness. Learning problems resulting from sickness always go hand in hand with problems in life. This task unites us as a family of teachers.
Like in all schools, we educators of the sick have the task to both teach and bring up children. When difficulties in life arise, our mission to educate cannot be ignored. In both areas of activity, the psychological as well as the somatic, we are dealing with long-term, often chronical courses of illness. Terms such as “bed rest” and their quantification such as “four weeks” or “six weeks” go back to previous times and are no longer applicable to the task at hand. We are dealing with intractable courses of illness and repeated hospital stays. That is not the same as permanent in-patient care, but rather long periods in which the children cannot attend their regular school.
On opening day, child oncologist Professor Burdach said: “Those who are taught have a future.” By teaching sick children, even those who are terminally ill, there is still an option for the future. Those on our lesson plans cannot be seen as either useless or hopeless cases. Nevertheless, we have to accept and foster a culture of both encouragement as well as leave-taking. This ambivalence also unites us educators of the sick throughout the various stages. Saying farewell to educational goals is also saying farewell to life concepts – we need to be there at those times. Sometimes it is the diagnosis of “tumour”with its irreparable functional loss. Other times it is the diagnosis of “Asperger Syndrome” that forces a rethinking, such as when a child is referred to child psychiatry for ADHD and during treatment it is found that the ADHD is simply a comorbidity of a pervasive developmental disorder that was previously unrecognised. In both cases following diagnosis, the young lives took other paths. Leave must be taken of plans, hopes, wishes and dreams.
I would like to condense the impulses of my speech into short theses:
Thesis No. 1:
Schools for the sick cultivate a culture of encouragement and future planning as well as of leave taking. The ability to mourn is an instrinsic goal in the teaching and counselling of all chronically ill children.
Experience shows that the optimal progression of the course of education is not always straight, in fact it seldom runs linearly. It more or less comes in waves. Sometimes children remain on developmental plateaus for a long period of time and the question is if, and when, things will progress. That requires patience. That also calls for a certain degree of humility rather than educational and therapeutic euphoria. We do not do the children, their families or ourselves any favours when intervening in the education of the sick, if our goals are in line with social hype, whereby finishing school is the only means to be happy and to be able to participate in society. Our relativising attitude will not always make us popular. We should not be afraid to stand up for our beliefs and counter the opposition.
Thesis No. 2:
A reality check, insight into the illness and coping with the illness are all instrinsic objectives of the lessons, counselling and diagnostics in a hospital school. Accepting reality means accepting the illness and loss.
The described attitudes are in no way limited to hospital teaching. We need to transport these into the councils of mainstream schools. The realisation that illness and limitations are part of life is by no means a monopoly of educating the sick. This can be didactically implemented in general school life, but not always, not immediately and not satisfactorily enough. If, for the time being, dealing with limitations takes place only in the sheltered teaching system of the sick, then this is not contrary to the universally stipulated idea of inclusion. The means to the end takes longer than the hospital stay allows the children the right to access the school for the sick.
What is the school for the sick?
Allow me a somewhat sibyllic-sounding phrase:
“The school for the sick is that which it wouldn't be without it.”
This attempt at a rather broad definition is also a reference to the media metropolis of Munich. My diction is a variation of the phrase chosen by Heribert Prantl in an article in the Süddeutsche Zeitung about the Munich Churches Day 2010. In answer to the question “What is church?” he said, “Church is that which it wouldn't be without it.”
In some German states (as in my state of North Rhine-Westphalia) schools for the sick have the legal status of a “school of its own kind”. I would like to expand on this in my next thesis:
Thesis No. 3
“The school for the sick is that which it wouldn't be without it.”
Legally it is a “school of its own kind”. It is also an indispensable, one-of-a-kind school. Its unique feature lies in the integration of methods.
Educating the sick integrates the medical-therapeutical aspect that comes from the fact that the child is sick, and the scholastic aspect that comes from the fact that this is indeed a child or adolescent. We teachers of the sick have undergone a paradigm shift – as Munich has clearly show – in the way our type of school had been described for years, and which I will sum up in the following thesis:
Thesis No. 4:
The name change to “school for the sick” instead of “hospital school” implies a paradigm shift. The task of educating the sick is detached from the place of medical treatment. By law, however, it remains coupled to regulation requirements of minimum bed rest periods.
In practice there are still conflicts of access rights and implementation, since our task arises from our pupils' learning and life problems caused by sickness. The length of this task cannot be quantified by the period of bed rest.
Educators of the sick caught up in the conflicts of a multidisciplinary team
Collaboration with other professional disciplines demands permanently thinking about boundaries and overlaps. Our work at the relationship level, already part of the bringing up task set by the schools, leaves our colleagues in the areas of psychology sometimes wondering if we are not “poaching on someone else's territory”.
With that, my Thesis No. 5:
Consideration of the level of relationship is originally part of teaching in the hospital. It is not the monopoly of the psychological professions. Likewise, it should not be a monopoly of the education of the sick either.
I would like to add a more detailed comment to that which stems from the fact that our profession, in my view, shows a great affinity to complementary psychotherapeutic skills. These are very helpful in the accompanying counselling and work with the parents – which are also part of the state's mandate. The supplementary psychological or psychotherapeutical knowledge of teachers of the sick is the more efficient, the more clearly we teachers are seen as educationalists.
Thesis No. 6:
It is helpful when hospital teachers can see and understand therapeutically. But they act only as school teachers. Their tool remains being able to teach with empathy.
One of the tasks of hospital teaching is to enable the sick pupil to maintain his performance level. Among the motivational didactic characteristics of the education of the sick is the individualised choice of curriculum, taking into account the specific symptoms. Subjects he can identify with, can give a physically suffering child comfort and stamina. In child and adolescent psychiatry, affect regulation of non-conforming children and adolescents can be greatly influenced didactically. I can only touch on this here this morning. Lesson content promotes pupils' mentalisation. Even in the most difficult phases of life, lesson content provides chances for identification or projective relief. Affects can be expressed verbally in a sociocultural acceptable manner. To come back once again to this morning's performance by the young drummers, whoever “drums away” a negative affect, beats drums, not other people. Our tastes may differ greatly from those of the other generation. A 50-year-old teacher does not have to like punk music. But if the pupils open up to punk music, then they have brought forth a cultural achievement whose stylistic device can be used in class.
Thesis No. 7:
The choice of curriculum supports affect regulation and mentalisation. Even in extremely difficult stages of life, the lesson content provides chances for identification and projective relief. What was once an effect is transformed verbally.
On the opening day of the conference, Hans Jörg Polzer quoted Friedrich Otto Bollnow's phrase of the “supporting ground” which young people need for structure building. Something similar is meant by the term favoured today, “containment”. Attending the hospital school gives burdened pupils a supporting framework. Our constancy, the content of their school life, and the reliability of our lesson planning fulfill aspects of containment.
Thesis No. 8:
Attending a hospital school gives schoolchildren who are unstable a “supporting framework”, a chance for “structure building”. Aspects of “containment” influence lesson planning and learning group assignment.
For a school to be a “supporting framework”, it must first have the necessary personnel and physical infrastructure. The school must be perceived as a school, not as just some little room somewhere. Of course we need sports halls in our child and adolescent psychiatric clinics. We also need facilities for theatre, music and art, for handicrafts and domestic science. That is all part of teaching in the hospital school. A senior physician who did not want to be the senior consultant in a children's hospital that did not have a school, referred to it once as a piece of bungling; that building such a thing would be like performing “surgery without anaesthesia”.
Out-patient accompaniment by schools for the sick
For some young patients, especially those in psychiatric clinics, even during their time in hospital attendance at their regular school is indicated. In any case, hospital patients are not automatically required to attend the hospital school, even if the transportation infrastructure makes this more feasible in big cities than in outlying regions. Conversely, it is no longer appropriate and by no means compatible with modern, flexible treatment structures to limit the right to access the school for the sick only to the time the patient is in hospital, as current regulations in the German states foresee. Switching from in-patient to out-patient care is not always identical with the full capacity of the mainstream school system.
Of the 40 hospital schools in North Rhine-Westphalia, the 17 that have large psychiatric operations gathered statistics in 2007 and 2008 that showed that around one-third of all schoolchildren changed schools after a stay in hospital. A trend that, in a follow-up survey conducted in major cities in North Rhine-Westphalia, grew to 40% of the pupils. New places of motivation, however, are not always immediately available on the day of discharge. Returning to the original school is often contraindicative. There exists the threat of relapse due to social or intellectual overload.
Thesis No. 9:
Treatment structures increasingly force the schools for the sick to accompany pupils beyond the in-patient treatment period.
Follow-up care by the school for the sick in the sense of a “smooth transition” is being increasingly tolerated in the German states as an exception to the rule. Currently, the school system is working on the possibility of pre-hospitalisation admission to the school for the sick. Long waiting periods, especially in psychiatric clinics, are well-known. How helpful it would be if the waiting period to get into the hospital school could be bridged. And how senseless it is when school administrators prescribe home schooling instead. As reasonable as this example is to oncology, the more it covers up the problems of one who fears going to school. Sometimes the symptoms are even concretised.
Preventative counselling services are also part of the extended field of tasks of schools for the sick.
Thesis No. 10:
Professional medical and psychological services, other schools and school administrators as well, increasingly call for counselling, diagnostic and teaching aid from the schools for the sick in terms of being a competence centre for learning disorders caused by sickness. This also pertains to information about disadvantage compensation.
My next-to-last thesis is dedicated to the conflict situation we educators of the sick can run into when faced with such an extension of our responsibilities under existing school laws.
Thesis No. 11:
Officials have decrees to comply with, teachers have the reality of life to consider. Teachers in a civil service capacity look for a balance of interests when there are discrepancies thereby formulating consequential educational policy.
Sometimes even civil disobedience is called for when decrees no longer reflect the reality of life.
A final one. In the cooperation with other professions and in the involvement with the young patients and their environment, our work requires an attitude that I would like to call a culture of candour. This includes acceptance of other disciplines and the readiness to trust parents and their children as experts in their own matters. Of course, we teachers need indepth professional knowledge and continued education. Science is but one pillar to master the task and to accept, sometimes also to bear, the situation of our children. I would like to address this second pillar in my final thesis.
Thesis No. 12:
Science helps us to teach sick children and adolescents. Humour helps us to accept and bear both their situation and ours.
In this sense, too, our days of work and cheer here in Munich were also a drumfire.