Working with Deaf-Blind Children and Adolescents
This article from Talking SENSE (Winter 1987) discusses co-active movement, language development, and the Van Dijk approach to communication.
Reprint permission, courtesy of Dr. Jan van Dijk, 2001
TALKING SENSE, WINTER 1987, pp.7-9
Working with Deaf-Blind Children and Adolescents
Dr Jan van Dijk was the main speaker our Weekend Away. He is famed for his innovative techniques in deaf-blind education and assessment. Here we reproduce some of the talks he presented to us.
I would like to tell you something about myself and my Professional career, not because I find that important in itself, but it reflects my personal growth and develop in the area of the education of the multi-handicapped.
Exactly 25 years ago, I started working as a young teacher with the deaf-blind children at the Institute for the Deaf in Sint-Michielsgestel in the Netherlands. When we started this work, we had very little knowledge about how to educate and teach the deaf-blind rubella children who came to our small department. In order to orientate ourselves in this complex field of education, my colleagues and I visited several departments in Europe. We got some ideas of where to begin and how to start, but we considered our small group of children quite different from the ones we saw abroad. Later when our knowledge and insight grew, we came to understand that our youngsters were really very intellectually backward. I went to Perkins later and saw how capable deaf-blind persons managed to develop quite sophisticated levels of language. In observing and participating in all of this I became rather sad, because our youngsters did not respond to the Tadoma method, neither could they keep themselves occupied in a meaningful way. The opposite was true. The moment we left our children alone, they regressed to the stage of self- stimulation and even self injurious behaviour. Finally we came to the conclusion that in our group of low functioning deaf-blind rubella children we had to find more or less our own way. And that is wah we did. Today they call it: 'The Van Dijk method'.
For 25 years I have been given the opportunity to develop this 'method' and we think the results are very promising. But of course it was the teachers (although I was teaching the children 4-5 years myself) and the child-care working staff who carried out the ideas with so much creativity. The method is based on a lot of intuition and experience, but gradually we were able to support our views with some data we collected by studying a very large group of hearing impaired deaf and deaf-blind children in Australia.
As in any area of study sometimes you go in the wrong direction. And then you must be fair to yourself and say: what we are doing now does not lead to very good results. Now, after so many years, I would like to explain to you what I have found to be valuable in the way we approach our youngsters.
The problem in education is always: How can you prove that the way you have followed was the best way? This is a good question, because there might be better ways which could have led to even better results. We did not make a comparison with other methods of teaching. One way of proving "your point" is coming up with developmental data and certainly we will do thin in the years to come. But there are other ways to give people insight in your way of working and the results you are obtaining and that is by means of filming the program at regular intervals. We started doing this seven years ago.
I think everybody will agree that being able to communicate with another person is essential to the existence of a human being. To be a person means being a social creature. You discover this by encountering another person. Encounter in my terminology means that you and the other person share a common interest. This 'sharing idea' is very dear to me. You see it when mother and baby look into each other's eyes and both smile, meaning - what we share together is our life. We observe it when the child is sad, mother picks him up, presses the child against her body and says "Don't be afraid, I am with you". She shares the child's anxiety. In practical education, when the child is unable to dress himself the mother may lay her hands on him and guide him to draw on a garment, all the time being sensitive to the child. If she feels that he wants to complete the action alone, she lets go of him. Or it might e that he would lead her hand - they are interacting, both involved in the same situation, communicating together without words. I have put forward these ideas on 'co-active movements' which have been understood as a technique to help a child to carry out some activities. This idea is catching on all over the world. But underneath this 'technique' is the idea of sharing each other's life. This gives the child the opportunity to become aware that there is another person who responds, who leads you, but who might be led as well. This communication does not mean that you, as a handicapped child always have to 'obey', but there are instances where you are the one who is in chare - in command of the situation.
In recent years so-called 'behavior modification' entered out field and I will not deny the effects of following the basic rules of learning. But since our children are so unresponsive at the beginning of education it is very likely that it will always be the teacher or the parent who gives the stimulus and that the child has to respond. If you read the curriculae which come to us dealing with multi-handicapped children, you will find hundreds and hundreds of ideas the teacher has to carry out from morning till night and there are programs which teach parents on the same lines.
What I noticed traveling around the world is that many children in these programs are very passive. They just wait for the tap on the shoulder, they wait for the sign to be made, such as: now you eat, go and dress, get your coat etc. It is always the other who tells you what to do. In our theory of communication, which we try to put in put in practice as well, it is the child too who has something to say, even by a very minor gesture or body movement. This theory is known as 'the theory of locus of control' which is very dear to me. In order for the child to discover his identity, his ego, in the encounter with the other person in the sharing situation, one must be aware of the very minor responses of the child, which gives him confidence that people are listening to him.
But let me add immediately that responsiveness means also non-responsiveness. For instance, we made the mistake that while we were creating this intimate sharing situation the teachers or child's careworkers were so happy that the child expressed his need or wishes, that they always did exactly what the child wanted them to do. For instance, when the child made the food sign an hour before lunch, they went over to the kitchen and prepared the lunch. In this way the child does not learn the limits. In this case he will continue to dominate his environment. When I come to discuss the older child, we'll see that in early education often lies the source of many big problems in puberty, because we have overlooked that education means setting the limits. What I advocate in this situation can be described as follows: the child makes the food sign and your respond to it by saying: you are hungry, for instance by patting on your stomach and you say not now, and point out at what time he may expect his lunch.
Time and Rhythm
This brings me to another very important aspect in education, which we really do carry out very carefully, giving the child ideas of time and what period of the day or week he may expect something to happen. We have called this calendar activities. If the child has any vision the activity to come is represented by a typical drawing. When there is no vision at all, objects which are characteristic for particular events are placed together for the child in a box (memory box), establishing in this way a sort of rhythm in the child's life. The value of this cannot be overestimated. It gives the child security and he can anticipate the next event. Last, but not least, it stimulates communication. Think about an event such as a meal. A plate is drawn, then the potatoes are represented by means of a drawing and then the teacher stops offer the child the pencil and then the child will make a drawing (sometimes in a very clumsy way) asking 'Will there be meat?' and then the teacher can either nod or cross out the meat drawing and make a small drawing of a fish, if that's on the menu. All these sorts of anticipatory activities are so much better than the stimulus response model which I spoke about. Because in these situations the child is emotionally quite involved with the activities, he is already familiar with them and as we know, the more familiar you are with a certain event, the more likely it is you will talk about it.
The Discovery of Reality
Communication in this way is meaningful for the child because it fits the pattern of his life. Therefore in any form of education where the child has to learn 'the rules' of the environment, including that of people, it is much better to take life events as a starting point. We are aware of the importance of this approach, therefore for children who are just in the beginning stage of discovery of reality, we have never opted for a traditional classroom with puzzles or stringing beans. In modern research this approach is supported even by people who call themselves behaviourists. They have discovered that 'teaching' language in a laboratory setting, which sometimes a classroom can be, is rather meaningless, because the child does not generalize what he has learned. In our approach the language the child is taught can be used not only in school, but in the residence too if the child is a boarder, and last but not least, by the parents at home.
The Parents Role
This brings me to speak about the parents' role in the education of multi-handicapped children.
I think strategies have to be chosen, which make it possible for a particular family to adopt the methods which are chosen by the educators in school or residence (and which should fit in the normal course of life) which are suitable for that particular family. This is not to say that parents should not be taught the basic way of how to teach certain skills to the child and to apply basic rules of learning. One of these basic rules is being consistent and being very clear to the child. It has been shown by recent research, when a professional enters a home and wants to teach the parents, for instance, the strict rules of the 'time-out' procedure, but he sees that one of the parents is unable to carry it out in all circumstance, because that parent emotionally just cannot do it, it is unwise and unpractical to push for this procedure. If he still teaches it at home, or through courses, he will find out soon that after he has left the parents, the family will revert to old practices again, leaving them a sense of frustration at failing.
Where parents are emotionally unable to carry out certain educational strategies, they should be referred to other agencies, who deal with the total structure of the family and which give individual attention at the same time, in case there is a weak link in the family system.
I am therefore somewhat skeptical about the effect of the family home intervention program, as they are carried out in the United States and Canada, where people with a rather poor training are sent into homes. They might have taken a course in management of multi-handicapped children, but I doubt whether they are experienced enough to observe whether these ideas can fit into the family system. I find it rather dangerous to introduce an intervenor in a family where there are pathological and disintegrational mechanisms working, which can be quite the case in the family where a severely handicapped child is living and where parents worry all the time about the future.
Moreover the professional helping parents should be aware that a family goes through cycles. When the child is still young there is so much nursing to do that the mother hardly experiences the difference between the care she would have given to a normal young child in comparison wit the handicapped. However when school age arrives and the problem of placement comes up, the insecurity can stress her and the whole family very much.
Puberty, a Time of Stress
Another stressing event we find is puberty. In adolescence there are periods in life where the child looks ahead into the future. It is important to give the child a sense of perspective, not only non-handicapped but even more strongly in handicapped children. Puberty and adolescence can be a time of extreme stress. The child wants to experience sexual relationship. How primitive this tendency can be. However I do not find it a really big problem. The problem of puberty and adolescence, especially in rubella children, is the problem of past education. In puberty the child must find the limits which society has formulated. You cannot as a 15 year old walk up to people and look into their bags. You cannot masturbate in public places. You cannot as a sixteen year old get your father out of bed and lay yourself down next to your mother. You cannot dictate to family members what to eat anymore. You cannot switch the television set from one channel to another, while other members of the family are watching. You cannot sit and wait until your mother gets you dressed. They call that in the State 'age-inappropriate behavior'. But it is too late when you have to deal with the rules of life in puberty.
In puberty it is tougher to stick to the rules and the parents must be ready, sometime literally, to fight with the child. They must believe in their own educational strength. By that time they must have learned to say 'no' to the child, and not only 'no' in a way that the child feels it is 'yes'. Recently we came across the most awful things since we are dealing more and more with older deaf-blind people, including many with Usher Syndrome. We have seen and heard that Usher teenagers have forced their parents to allow them to take driving lessons, although everyone knew that they could never take the test. We have seen and heard that young boys have demanded a girl and that educators even have considered calling in prostitutes.
If you say this is not going to happen in my family or in my residence, it shows that your are not familiar with all the things these youngsters can do. They can put so much stress, so much pressure on the system in which they live, that without proper guidance people might give way. And I am the last one to blame them for that. Of course let me not dramatize this. There are many youngsters, deaf-blind and multi-sensory impaired, who developed themselves as rather harmonious people. But very often this is after a battle in the preceding periods of life.
With our rubella youngsters, there is a problem which can cause a great deal of discomfort where they live. This is what some youngsters are so fixated, wanting one thing or another, that it is very hard to cope with them. Everyone who is familiar with the rubella child whose cataracts have been removed knows that they are sometimes very persistent light gazers. That they want to catch any ray of sunshine and in order to obtain this they might climb upon chairs and tables or even lie down on the road, in order to watch the streetlight. I found that when the child gets older and becomes interested in other things this craving for light becomes less. I have the impression that when the child is very backward in his development, so that objects or toys do not give the child any satisfaction, he will stay interested in the light.
But there are other things too, which may cause problems in the family home. There are youngsters who are very fixated upon technical equipment such as washing machines or record players, or even in the flushing mechanism of a toilet.
In my initial research on a fairly large sample of Australian rubella children, the parents repeatedly said that coping with this type of behaviour was really frustrating. I asked myself the question whether this typical behaviour would disappear over the years. I am very fortunate to be able to announce that the Dutch Van Overbeek Foundation, associated with our Institute for the Deaf together wit the Deaf Blind Care Association has given me the opportunity to pursue these kinds of questions, together with many others I have raised over the years, how the rubella child will finally turn out to be.
Very recently the first data were brought to may attention by our research associate in Melbourne, Australia, Miss Ruth Carlin. Our first impression is that quite a few rubella persons getting older settle down, but that their particular interest very often stays. It was noted that, for instance, a high functioning rubella adolescent, being at college, would sneak out of bed in the middle of the night in order to copy train schedules. Another subject spent most of his time memorizing the scores of the national football league. Parents did ask me what to do about it, because stopping it seems to cause a lot of tension in the child. I sometimes have the impression that rubella children do these somewhat awkward things just to be a bit provocative. It seems that the more the educator shows his disapproval of their behaviour the more they insist on exhibiting it. If that is the case, neither punishment nor taking away the favourite object will do any good. The opposite is true. By this kind of reaction they, as it were, get an extra reward, which overrules the negative effect of the 'punishment'.
In our philosophy we have developed a rule of thumb, that is, trying to make arrangements with the child that we will not be bothered by his fixation, and that he is allowed to practice his 'favourite hobby' in a certain space at a certain time we agree upon. With the child whose mental capacity is too low to make such a deal, we found that having the favourite object in their immediate environment, for instance covered in a box, can produce more meaningful behaviour as they find out that after a time they get permission to play or manipulate object.
Ways of Communicating
Perhaps one of the most important things we have discovered in dealing with the children during all these years is the proper selection of their mode of communication.
In walking around in our department I am sometimes flabbergasted to see how some of the children communicate. Some of them cannot make any gesture or sign at all, but are very professional in using fingerspelling. With other students you offer them large printed words, and although they are unable to read, they, as it were, engrave these written symbols in their mind and attach meaning to them. Even some who can neither read, nor write, nor sign, yet pick up the total shape and meaning of the finder configuration, which is what fluent fingerspelling is. These children mock all the laws of development. In 'normal' development the child learns first to use body language, and then gradually the natural gestures are replaced by words, and in the case of deaf children with more formal signs and/or speech. This 'logical' road is not always the right one for deaf-blind youngsters.
I have come to the conclusion that there is not such a logical development road for these multi-handicapped persons. And this of course makes assessment, whose purpose it is to predict the child's 'next step', a very hazardous activity. Many curriculae for multi-impaired persons do follow this 'line of development' in which nowadays signing is advocated. In my opinion signing is only one option for the child and certainly no panacea for all deaf-blind persons. I have the feeling, that when there is any vision left, the communication system in which the picture or the written word plays a role is the most important for many of these youngsters. In other words their memory is best supported when they can go for visual clues. For a child without vision there can be some sort of embossed slue, which supports the memory. Why? This is still a matter of speculation for me, but I think that the memory for signs is rather limited, especially with those youngsters, which sometimes is not true for pictures or written words and fingerspelling associated with them. I think this has to do with the information processing involved in drawing or writing being more detailed and therefore sticking better to 'the brain' than is the case of gestures and signs.
My final conclusion is, that in deaf-blind education one should always be aware of 'the next step'. One can only establish this by studying and observing the child in different circumstances, offering him different experiences and seeing what is most effective in his life.