Plenary session 1 - Early intervention, Monday 10 July 2000, 9.00 - 10.30
Since 1981 I have been working in the Early Intervention Service for Visually Impaired children of Madrid (ONCE-IMSERSO). This time for me has been especially enriching both professionally and personally. Throughout these almost twenty years, I have been configuring in my head, or perhaps in my heart, thanks to what other professionals were able to transmit to me and, from what I have learnt from other children and their families, a model of what early attention should provide. An idea of what I believe can happen in the first years of the life of a baby with severe visual deficiency in the family environment, and what are some of the keys that sometimes impede the baby from growing up without other handicaps than those strictly inherent from the lack of sight.
It is impossible to concentrate into a few minutes all the questions that I would like to share with you, and so many question marks which they give rise to. But being conscious of what any explanation supposes in simplifying the complexity of the mental matters themselves, stimulates me to present a synthesis of the limitations.
This, in my opinion, supposes the conditioning principles that mark out the life of a blind child and sets him/her in a risk situation in the attainment of the healthy and harmonious development of his/her personality. After to formulate some proposals for the organisation orientated at the answer, in the most satisfactory way, to the needs of the population.
Obviously, some of these shortcomings are inevitable and the blind child and the family will have to learn to live with them.
But with more frequency than is desirable, these original limitations, in combination with the reactions that they cause in the families, mainly with the parents, bring about secondary changes, sometimes more serious than those inherent from the visual deficit itself. I am referring to those interruptions or deviations from the development that cause so much suffering on the children and their families, and which very probably would be avoided by preventative and careful intervention.
I am aware of the responsibility and of the difficulty that prevention supposes and of the need to continue to research. It is because of this I would like to share with you, from this privileged place that I have been given, my concern to provide a specialised training and sufficient infrastructure for the professionals who try to solve the problems of the children and their families during a crossing that seems to be a minefield.
Below I have made a brief résumé of the main questions which in order of emotional, cognitive and conduct aspects, interfere with the development of the visually impaired child, in order to finish with a proposal of the professional profile that is taken on board by this complex problem, which in my opinion, it requires. That is, if you are in agreement with me in what the Early Intervention Programmes must fulfil in a priority way to prevent changes secondary to those of the visual problems themselves.
The comments which I shall mention below are written in the framework of emotional development shared by many authors in the psycho-dynamic line and are more fully described by M. Mahler.
Margaret Mahler. The psychological birth of a human infant (1977).
According to this conception, the baby progresses from a symbiotic phase which it is in, and with its mother works as a dual unit, with a mutual unit limit, surmounting different stages of differentiation and separation from the maternal figure to go on progressively acquiring independence until being able to form itself into an individual entity.
From this reference to theory I shall select those questions which seem relevant for the development of the blind or severely visually impaired child.
Eye contact promotes the connection in itself, since it is in this that the mother sees the first signs of recognition and preference when the child fixes its look on her.
The deprivation of the look as a universal pre-verbal code of emotional and relational value, unquestionably carries with it possible sentiments of rejection, sadness, bewilderment, surprise, etc in the parents.
By means of eye contact, the baby expresses desire, interest, happiness, attention, rejection or displeasure.
In the blind baby it is usual that there is less facial expression and a certain appearance of passiveness that can give rise to feelings of incompetence, disorientation, etc in the parents.
By means of eye contact the baby starts, maintains concludes or avoids interaction, and expresses the optimum limit which it wishes to establish.
The situation that brings about the lack of this information, (also emotional) provokes - in combination with other factors - a risk of causing an invading interaction or the opposite, a limited or distant interaction.
During this period (pre-verbal), both the baby and also the carers use eye contact in order to indicate reference (the feeding bottle, the door, the car, etc.).
Blindness clearly supposes a difficulty in order to indicate-recognise the reference of the communicative intentions.
Sight in itself is a source of stimulation, of contact with the outside. Continual perception of the "outside", makes disorientation easier and invites (sometimes compels) the subject to relate with that exterior.
When it is lacking, a tendency of introversion and risk of isolation is produced. The absence of a visual stimulus, is not, although sometimes assumed, sufficiently the cause of the isolation but, more likely, a circumstantial source of communication problems, and not that which can bring about different forms of autism.
Sight favours the passing of egocentricity to disorientation in so far as it allows the perception of oneself from outside, from an "other" even for shaping of oneself. Sight, we can say, makes one an individual. It distinguishes and recognises one subject from amongst other subjects.
Without this, the blind child comes across more difficulties in getting to know him/herself as a subject in regard to all other subjects. This is patently obvious in the delay of the correct use of the deictic forms of the language.
Visual deficiency, like others, also means a lower level of independence and separation of the child from the carers. The lack of self sufficiency in regard to others which any person with a disadvantage suffers, frequently produces a personality conflict in the child which resolves amongst two polarities in tension: "dependent" or "megalomania" personality . In other words either the child submits to the other or he/she takes the alternative path using denial or maniacal defences and putting on a show of false independence.
In short, in the desire that everyone attains a humorous attitude that will allow enjoyment from the growing process, the blind child is seen as compelled, as a consequence of the already mentioned problems and that others have not, of having to pay an extra price, more than other people, in the effort made. But, although this supplementary effort is inevitable, the personal response that each subject gives, or the interpretation that each makes, can adopt very different forms.
It is this variety of responses which gives the margin of early attention to help blind children and their families to find a way of adaptation. It will allow them to, if I may be permitted to use the expression, "be happy".
In spite of the fact that at this conference I am emphasising the emotional aspects for the considerations alluded to, I want to absolutely forget the influence that the visual deprivation exercises on cognitive development.
Development in this area requires an exclusive space, but at least I wanted to leave mentioning those questions where the blind child is going to need an adult who helps to interpret and make sense of the weight of the stimuli that comes from the outside world.
I shall also outline, without stopping in it, some questions relative to the field of conduct, to which we must pay some attention in special programmes that we carry out for each child.
With this synthesis of the main conditioners that visual deprivation imposes and which supposes complex movements of social and emotional nature in the families, I have tried to justify the need for a working model in Early Intervention which, without forgetting the informative and enabling aspects, I paid special attention to the emotional movements that are taking place in the intra-psychic and inter-subjective settings of the baby and its parents, which can suppose a serious obstacle to carefully formulated programmes.
All the professionals who have worked with families have been able to confirm and where the work is in vain, that on numerous occasions, they tell us about the inadequacy of a specific conduct or about the importance of a specific practice to achieve functional acquisition. And, it can even finish up counter-productive to insist on a specific orientation when we see that something is stopping the parents or the child from carrying it out. Non explicit motives suppose a serious obstacle for the well being of many carefully detailed programmes.
I am well aware that the model of attention that I am proposing here today, even though it is being shared already by some teams, is not an immediately generalised model, and will still require years to get off the ground. However, it seems to have shown in the last works about the development of infantile psychoism , that the parental representations have an effect both directly and indirectly on the personality of the child. We have to accept that professionals who work with the infant population, and especially those who work with the infant population with some disadvantage will have to be alert in this latent world to what is taking place with the significant people who surround the world of the child and particularly with the figure of fondness, and which reflects in conduct perhaps subtle but observable.
This model would have a double aspect: the preventer and the enabler, the psycho-pedagogy and the psycho-therapeutic. I sincerely believe, that the handling of this problem will not be easy and will require specific training and an adequate infrastructure.
There are already numerous legal provisions and declarations under the framework of International Bodies which recognise the right of the disadvantaged child to receive specialised attention from the first years of life and which establish certain criteria how this must be. And also many European countries already have University Master's Degrees in Early Attention which provide general training in this field. On the other hand we already have available some accumulated experience in Early Attention for blind and visually impaired children. I believe that we are at a propitious moment to, help in this general framework of attention during infancy, to build a theoretical group for attention to children with visual impairment; and agree on a professional profile that will allow us to give answers to the particular circumstances that have an effect on the group.
Below I have outlined a proposal for this profile which is supported by various Spanish professionals who at any time could be of use as a springboard for a possible discussion.
The professionals involved in the Early Attention programmes for Children with visual impairment will have university qualifications, related to the fields of psychiatry, psychology or education, in line with the professional role that they carry out within each team.
Training that includes a certain qualification in the following fields:
In addition to the training requirements that we have just mentioned, the Early Attention Therapist must have some of the following personal characteristics, which may not usually be shown on a standard curriculum vitae and which, however, are vitally important for the success of the Early Intervention Programmes.
Without trying to be exhaustive, we can mention a few of these:
Finally, I should like to point out how in the second half of the XX century Early Intervention has gone from being a pilot experience in some countries to being a generalised and recognised reality all over Europe, where today we can count on excellent professionals. However, I still feel that we have a long way to go along the road until the Early Intervention can respond satisfactorily to the challenge that being disadvantaged in infancy places.
Because of all this we should encourage meetings of professionals in both the national and international environment which will allow us to consolidate a mutual theoretical body and adapt to a professional profile in accordance with this delicate task that we carry out.
I sincerely thank you for your attention and the opportunity that this congress has given us to exchange our professional experiences.
Rosa Lucerga Revuelta,
Therapist and technical co-ordinator of the Early Intervention Service to Visually Impaired Children
ONCE-IMSERSOC/Santa Hortensia 15,
28002 Madrid, SPAIN
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