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Multi
handicapped visually impaired children with severe
psychiatric disturbances in daily school life
Focus: School Years
Topic: Multiply handicapped pupils
Doris Drave
Sonderschullehrerin
Blindeninstitutsstiftung
Ohmstr. 7
D-97076 Würzburg
+49-(0)931-2092-115, -370
1. Preface
In the history of special education it again and again gave moments, in which pedagogues asked whether – and if, how – education of them entrusted children is possible. It was like this at the end 18th, beginning 19th century with deaf and blind children. It was like this in the 19th/20th century with mental-handicapped children. It was like this at the end of20th century with severe handicapped children. And today it is the same with severe handicapped children with psychiatric problems. And always there were special teachers who do not entrust these children only the medical profession, but tried to dare education. Education is meant in the sense of global, multilayerd guiding of the persons concerned with help of special methods from the pedagogic, the psychology and psychiatry.
Which children and young people does it concern?
Jutta was described in their earlier class for multiply handicapped visually-impaired children as follows:
“Jutta comes to the meal into the kitchen. Their schoolmates must leave the room. She cannot bear the noises of the others. Although she loves to eat, she throws impulse-like the spoon and her drinking bottle across the room. (The plate is made of a timber construction fixed at the desk). It raises the desk and shifts it away. She jumps up, hits the educator and scratches her. With much strength and effort Jutta is brought into her own lockable single room. There she cries and strikes with full strength with her feet and hands against the door. The schoolmates cannot bear this noise. They become restless. Similarly the care situations runs, in which the co-workers physically must be very near to Jutta. Jutta gets fear, can bear this nearness only with big difficulty.”
In the last 5 years the psychological status of Jutta worsened in such a manner that all co-workers were overtaxed in the conventional home-integrated school form. While the individual stays of Jutta in psychiatric child and youth hospitals many different medicines were tried out. Usually a good effect could be determined immediately after giving of a new medicine. After 2 to 3 months it seemed however that the body separates the medicine without effect. Juttas original status of psychological instability occurred again to substantial.
With three more pupils of our institution the co-workers also were at the end of their energy. The common educational advancement of multiply handicapped visually impaired pupils and pupils with additional psychiatric disturbances was no longer possible. What was to be done? What could we change? How should we act?
2. Institution for the blind in Würzburg (Blindeninstitutsstiftung Würzburg, Germany) (www.blindeninstitut.de)
The school for visually impaired pupils (support centre) in Würzburg (Germany) takes care of 228 multiply handicapped visually impaired children and young people.
Due to the intensity of the handicap (visual impairment, mental handicap, physically handicap, epileptic fit, hearing impairment, missing communication) and the high care expenditure home-integrated classes were formed. The educational advancement and care take place in the home and living area. The school staff (special school teacher, remedial teacher and caregiver) comes to the pupils. This concept has different advantages:
A global remedial service by the school, the home staff and the therapy department enables an intensive work with the severe handicapped visually-impaired children and young people.
3. The special educational needs of multiply handicapped visually-impaired children and youth with severe psychiatric problems
3.1 New challenges
The “new” problems of the additionally occurring psychiatric disturbances with some of our pupils was a personal challenge, which was situated also to look for new ways of advancement. Which type of advancement is necessary and meaningful for these children and young people? Which abilities are theirs, which I can use for school? Which meaning has the psychological illness on my work? Which value does the medicamentous handling have? Which conclusions are there so far within this area, which I can use for my work? The co-workers concerned, the management of school and home and the board of directors were itself united in consciousness to attend to the described problem immediately. A study group was formed. This consisted of the director, the school management, the home conductor, the conductor of the therapy department, special school teachers, remedial teachers and educators. It became clear that the existing educational concepts, the current specialized knowledge and the available structures were not suitable for these humans. Besides it became clear that the four pupils (2 girls, 2 boys) were no longer groupable and the responsible staff were at the end of its tether (Burn-Out-syndrome) and ideas. After an intensive exchange, which almost took one year, the following was formulated:
“This means that
(Concept of the study group P. 2 not published, 30.03. 2001).
The Group size and the rooms were described in the concept, likewise the configuration, the staff in school/home, the psychological and special-educational service as well as the accompanying services, advanced training and supervision. The probably most important record in the compiled concept read:
“All employees are obligated to carry and arrange a together compiled concept.” (concept of the study group P. 2, not published, 30.03. 2001).
3.2 The staff, the group and the pupils
In September 2001 the pilot project started.
At school are working a special teacher (full time occupation with 26 lessons), a remedial teacher (full time occupation with 29 lessons) and a nurse (18 years of work in a psychiatric hospital, part-time work with 20 hours).
In the home are working social pedagogues, educators, practitioners, caregivers and students of special education. The conductor of the therapy department (psychologist) supports us regularly. A psychiatrist accounts the medicamentous care. In the case of crisis he is within reach at any time.
The two boys (Felix and Max) drive home every two weeks and spend the majority of holidays with their parents. Anna drives home every three weeks and is only partial during holidays with her parents. Jutta is the whole year in the Blindeninstitut, she is visited by her family.
The school is integrated in the dwellings (home-integrated instruction). The school personnel comes to the pupils.
4 single rooms are at the disposal to the young people. They are used for sleeping and during the day as attraction-poor retreat rooms. A small class room is used for individual care and for work at the desk. (marks with finger colours, feeling different materials). The bathroom is very largely, has 2 toilets, 1 bath tub (height adjustable) 2 wash basins, 1 shower with seat possibility and a height adjustable couch. At the ceiling heat emitters and a lifter (rails with lifter of the bath tub to the couch and to the shower) are installed. Further more there is a group room, a kitchen with large dining corner and a large group room. This is useful for common activities (morning set, relaxation exercises etc..). From the group room we can go directly to a large terrace and to the free playground. Outside of the housing group, but on the same floor there is a low-vision-training room with a sound box, and also an alternate room, which we use for individual advancement.
Jutta, 20 years
Anamnesis: Early born (26th week), brain bleeding, difficulty in breathing syndrome, 5 months Incubator, post-partial Asphyxia, Cerebralparese, mental retardation, blindness, first year in the hospital, no active language, good language understanding, can walk.
1992 Jutta came into our institution. The mother has two more children and was overworked. Until 1997 Jutta could get advanced training in a class for multiply handicapped visually-impaired children. At the age of 15 substantial behaviour disorders occurred, which strongly affected the entire operational sequence in school and home. A psychiatrist was contacted and medicines used (1997).
Juttas behaviour was described in such a way: “Very tensely, low frustration tolerance, very provoked, foreign aggression against persons and things, extreme noise sensitivity, tendency positions in phases (depressions, high tendencies), sleep disturbances.”
Her behaviour disorders could be reduced with direct medication at short notice. In spring 2000 another stay in a hospital of the child and youth psychiatry became necessary. There the diagnosis “autism with depressive phases” was placed. Her general state worsened further. In autumn 2000 stay in the psychiatric hospital. The distances to the hospital stays became shorter.
Felix, 12 years
Anamnesis: Status after Herpes Encephalitis, severe general development arrears, blindness, no active language, strongly limited language understanding, substantial refusal of contacts (cries loud and shifts persons and articles unique and with strength away), extreme high choking of meals and drinking, scratching and pinching at the own body (partial open wounds at the leg, neck and in the face (carries gloves), can walk, retreats for hours by pulling a cover over himself and whipping stereotypedly with the torso on a sofa. In 1999 Felix was committed into a hospital for child and youth psychiatry for 6 weeks. The findings of the hospital mean unique that it is a autistic syndrome.
Max, 20 years
Anamnesis: Severe multiply handicap due to a vague early childlike brain damage by twin birth and postnatal complications, visually handicapped, general heaviest psychomotor retardation, epilepsy, tetra spastic, can move himself forward through crawl, get up alone from his wheelchair, bites and tears his clothes. No active language, reduced language understanding, contact defence, self-aggressive behaviour (strike in the face and biting into the hand, strong knocks with the head against the wall) intensive mood-variations (long persisting hysteric crying), retreat behaviour
Anna, 15 years
Anamnesis: Peripartiale asphyxia, reanimation, severe mental handicap, autism, stereotypy, auto stimulation, auto- and external aggressive behaviour, visually handicapped, perceptual disorders, can walk, no active language, good passive language understanding, extreme body voltage, rage outbreaks (violent applauding into the hands, hysteric crying, drub with the legs, bites herself in the hand, throws with objects, attacks persons), excessive demand by too many attractions, changes in mood.
1999: Stay in the hospital for child and youth psychiatry, dismisses with the diagnosis: atypical autism, disturbance of the social behaviour with external and auto-aggression.
3.3 The educational activity
On the basis of the description of the school work from waking up to lunch time, the meaning of the structuring for this clientele is important. Waking, rising and the morning toilet are part of the educational work. This part of the care is a substantial constituent of our function.
Our educational concept contains the consistent structuring of the school day. This concerns the period, the locality and the content.
The first weeks we took time to become acquainted with the children and young people. Activities were executed, which were well known to them. Very fast it became clear that a temporal structure for our pupils is important. It gives orientation and security. The single activities (care, breakfast) cover 30 minutes. The sequence was put obligatorily firmly. Anna is the first one to be bathed and tightened, then Jutta follows, then Felix and in the end Max. A break of 15 minutes in her room results for Anna. While the other pupils have their morning toilet, the next individual advancement begins for Anna. At 9.30 Anna, Felix and Max have breakfast together, Jutta eats by herself afterwards. General break for pupils and responsible persons. Individual advancements and group activities begin. The school day is terminated together with a song. Like that the school day is clear by activity - break - activity for the pupils. Supporting to it we developed non-standard announcement systems such as daily border with photo maps and check-in-boxes, home driving calendar, daily planner with symbols.
Contemporaneous we introduced a clear spatial structure. We assign spaces or workstations to the individual activities: The health care is executed in the bath, breakfast, Vesper and lunch takes place at the table within the kitchen area. Group activities are held in the large class room, individual advancement (TEACCH, work on the desk in the little class room).
In the entire team (school and home) all individual and group-advancements are compiled and discussed together. In smallest steps the flows are described. So we are able to observe successes or backspaces.
We strive to give verbal simple and clear statements to the pupils. In the same kind we accompany linguistic their activities. In crisis periods it is important to be clear and determining in the verbal and concerning procedure. In the dialog the pupils have very different possibilities. Jutta e.g. has a good language understanding. She has no active language. She answers to questions with heading vibrating or simple sounds (“Gugugu” means, she enjoys). She shows her desires (swim, riding, meal, toilet, walk, terminating an activity etc.) through individual learned gestures. This type of communication runs well, if Jutta is psychologically balanced. If Jutta is badly stimulated (depressive phase, fatigue, excessive demand etc..) she has an non-clearly communication (she gestures all her desires at one time and cannot decide herself).
Anna understands simple jobs (“Bring your plate into the kitchen, take your card off the border). She can assign the appropriate activities to the photos of her daily border. Max sometimes drives to his daily planner and looks into the individual small boxes for symbols. Meanwhile he can assign the symbols to the individual activities. On his part he gestures “meal”. He shows joy by laughter and a friendly mimic. If somewhat does not please him, then he grumbles loud and clearly.
Felix does not look up for contact to other persons. It is not easy for him to permit nearness from the outside. He experiments with articles, does gymnastics gladly on the gymnastic role. He only gestures “meal”.
A substantial constituent of our work in this pilot project is an extensive documentation.
This contains video accommodations. We film crisis situations and also activities in productive sequences. The accommodations are demonstrated and analysed in the team.
Non-standard observation forms complete the video documentation. In these papers the behaviour and communication in different situations (health care, breakfast, individual advancement) are represented and evaluated visibly.
We have a week plan for each pupil. Here we daily write down the executed activities. We describe them in terms of catchwords and note progress (marked with marker) also like medicine modifications or special occurrences. All physician attendance, medical statements and medicine modifications are kept in a documentation briefcase per pupil. For all co-workers in the team there is a info- booklet, which enables daily information exchange.
3.4 Medical-therapeutic work
All specific medical questions are discussed and agreed upon in a weekly meeting with the child and youth psychiatrist. This concerns the medication, the general-medical supply as well as the information about educational-therapeutic interventions. Together with the psychologist of the therapy department the further procedure will be discussed.
4. Summary
The new challenge to teach and educate also visually-impaired children and young people with multiple handicaps, which indicate severe psychiatric problems, was assumed by our institution. Even if it is not easy to be in-permitted on such pupils the necessity is unmistakable in addition. And the arguments in the preparation to such a class show, that this realization is not always directly interspersable. But the right of education exists for all children - without exception. For all visually-impaired children, for all multiply handicapped visually impaired children, for all children with psychiatric problems! The success of our work - even if this work often is very hard – confirms us in this point.
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