Plenary Session 2 - Multi-disabled visually impaired, Monday 10 July 2000, 11.00 - 12.30
With your permission, I would like to address the notion of "multi-handicap".
A "multi-handicap" is a distinct condition that is more than sum of the specific handicapping conditions that the term embraces.
It is a dynamic system characterised by the permanent interaction between simultaneously occurring deficiencies, disorders and/or impairments.
In France, multi-handicapped children were, for many years, considered as uneducable and perceived as "derelicts" carted by their parents from one institution to another without much success.
Yet, daily observation of these children reveals the richness of their personal histories, of their potential - albeit unknown to them - to overcome their condition, of the possibilities for improvement, however slight, of the difficulties inherent in their combat to surpass themselves and open up new vistas in humaneness.
In an attempt to answer this question, I will adopt an etiological approach combined with the analysis of a cross-section of the population of the visually-impaired, multi-handicapped children cared for at "La Pépiniere".
After describing this population, I will then go on to present the main features of the educational and therapeutic programme that we have developed. I will also try to demonstrate that the successful implementation of this programme requires that professionals adopt a different approach to the way they work. As such, they need to be trained to a high level.
Before addressing the main issue, I would, however, like to say a few words about the parents of multi-handicap children.
Like all parents, these parents are an irreplaceable presence for their children. For this reason, their support is vital for us professionals.
I would particularly like to focus on what is specific about the condition of these parents.
The specificity of the plight of parents of multi-handicapped children stems from the fact that the very notion of mulit-handicap implies effects that differ from those associated with mono-handicaps.
Parents of multi-handicapped children and parents of mono-handicapped children share a similar experience: the first announcement of their child's handicap.
The effect of this first announcement has been described by parents as being extremely violent, a veritable psychological upheaval that, because of its intensity, provokes a radical change in their lives. There is a distinct feeling of "before" and "after": parents have the distinct impression that they themselves have changed completely, that the world has changed and that the way they are perceived by others has changed.
The initial distress caused by the announcement then gives way to a feeling of injustice and indignation.
The specific condition of parents of multi-handicapped children, however, results from the repetition of announcements of this kind over time.
Each deficiency, each associated disorder is the subject of a new revelation that revives parents' anguish and prevents psychological healing.
Each new announcement completely dismantles what was achieved by way of adaptation to the previous announcement and parents must begin the entire process all over again.
The incomparable, indescribable mental distress experienced by parents is expressed in a number of different, and at times misleading attitudes that range from complete withdrawal to over-investment in caring for the child.
Within this framework of suffering and distress, the multi-handicap imposes its own logic, disrupting everything, transforming life into a perpetual sprint race.
Time, as it is experienced by parents, is often perceived as tragic, a time of doom that they try to cope with as best they can.
Caring for the multi-handicapped is tiring but the sensation of fatigue is insidious and all the more difficult to circumscribe as it is an intimate but vague impression that is part of everyday life.
Whereas healthcare professionals are entitled to plead professional fatigue - indeed, they can even take courses on the subject - parents, on the other hand, rarely have the opportunity to broach the subject.
All of this leads to a sentiment of isolation that is heightened by the powerlessness of medical practitioners and various organisations and structures that are unfamiliar with the notion of multi-handicap.
These parents' sentiment of isolation is further accentuated by the helplessness they feel towards children who do not react like other little children and who often seem absent or indifferent to what is going on around them.
Providing support for parents of multi-handicapped children, therefore, is not only a necessity but also a moral obligation.
But this support cannot be provided "any old how" and by just anyone.
As far as we are concerned, we have chosen to work in the presence of children's parents -- without attempting to take their place -- hinging our work on their knowledge of their children and taking into account their misgivings and their queries, but also their shortcomings, in order to provide them with an opportunity to gain or recover control of their own destiny as well as that of their child so that they can once again play an active role in every sphere of their child's life.
I should like to begin with two remarks concerning the effects of visual impairment on children's development. The various forms of visual impairment are well known but I will only discuss two forms that are particularly relevant to our discussion.
Thus, for the amblyopic child:
These children run the risk of being limited in their "appetite" for visual information. Without appropriate training, there is a great risk that amblyopic children become "brain deprived".
For the blind child:
In the absence of an appropriate educational programme, many children who are blind from birth develop in a manner that is far from satisfactory. Thus, depending on the author, 25 - 50% of all children who were born blind, and in whom no associated neurological disorders were observed at birth, present developmental disorders similar to those observed in autistic children.
The high frequency of symptoms usually associated with autism seems to highlight the importance of the visual system in the development of this disorder, accounting for observed deficiencies as regards early interaction between mother and child (reciprocal eye contact, etc.) and difficulties in processing certain types of visual information.
Blind or amblyopic children are children at risk and constitute a challenge that very few parents are able to cope with alone. Hence the need to implement early intervention programmes in which parents are actively involved.
If the management of visual impairment alone is a challenge, the task takes on formidable proportions when visual impairment occurs simultaneously with other disorders.
The cross-sectional study was carried out in February 2000. The records of 96 children, aged 6 to 20 years old were examined.
All the children in the study had two disorders in common:
Associated disorders included:
As regards visual impairment, it should be stressed that, in the vast majority of cases, this was part of a more wide-ranging affection of the central nervous system.
As far as cortical blindness is concerned, we would like to emphasise that the observation of these types of "blindness" within this population is relatively recent. This may be partially explained by the fact that they are difficult to diagnose.
As you know, the term cortical blindness refers to the total inability to decode visual information due to the fact that the occipital lobes either misinterpret or are unable to interpret this information (in spite of normal retinal function and visual pathways).
As a result, the child's entire sensory experience is distorted from an early stage. Their visual apparatus transmits information that they are unable to decode; information that is inconsistent, arbitrary and impossible to co-ordinate with that conveyed by other sensory organs. This situation is quite different from that of ophthalmic blindness in which there is no visual information at all.
The education (or re-education) of these children should take into account their mode of cognitive as a whole. Generally speaking, we propose a visual stimulation programme in which basic stimuli (light, movement) then significant stimuli (coloured object) are used to stimulate attention.
Whenever possible, we also propose exercises involving the analysis and decoding of images that place particular emphasis on verbal aspects.
It should also be noted that associations of 3, 4 and even 5 disorders are frequent.
However, one should not be put off by the spectacular form of certain syndrome.
On several occasions, we have observed that children presenting spectacular syndromes can evolve in a manner that is just as spectacular.
Evaluation of the progress made by many children who fall into the categories considered in this study reinforces the hypothesis that the onset of certain associated disorders, whether behavioural or intellectual, are not inevitable.
Many syndromes or diseases were widely studied and described more than 20 years ago, i.e., at a time when these children were considered to be uneducable.
With experience, the psycho-educational and pedagogical approaches adopted by health professionals dealing with these children have revealed deviations - sometimes quite substantial - between clinical prognoses and actual outcomes.
It is not my intention here to list the numerous syndromes occurring in the population. On the other hand, I would like to draw your attention to the condition of those children affected by degenerative diseases.
The onset of these diseases is usually marked by a decline in visual acuity, even though the child's potential is perfectly normal at the outset. This is followed by a progressive decline in intellectual ability, with the appearance of grand mal-type epileptic seizures and cerebellar disorders affecting balance and the ability to walk. The course of the syndrome is inevitable, with dementia and cachexia preceding death.
The management of these children and their parents requires special attention, as we will see later.
These children clearly constitute a permanent challenge for us as health professional since they constantly force us to call into question our own ability to teach, educate and care for them.
This requires that health care professionals be initially trained to a high level, and that their training be completed and enhanced through specialised courses that are part of a programme of continuous training.
This is the approach that we have adopted in France at our "Centre de Ressources" (Resources Centre). The specialised courses offered at our Centre will be available to other European healthcare professionals as of next year.
However, a high level of training is not enough. Professionals also need to learn how to work together.
Indeed, simultaneously taking into account several associated disorders, each as complex as the other, reveals the existence, for each child, of an unique pattern and a diversity of needs.
In order to prevent disjointed action or intra-team cacophony, in which neither children nor professionals would find a common purpose, it is essential to formulate individualised programmes that are consistent with an institutional programme.
It is equally necessary, for the implementation of this programme, that professionals from different backgrounds, of differing statuses, be able to combine their competencies and depend on each other, for the purpose of consistency, while at the same time respecting the specific competencies of their fellow team members.
Initially, professionals from each discipline adopted the approach that their discipline generally takes towards dealing with mono-handicapped children.
However, it soon became obvious to these specialists that the tools and techniques that they had "imported" from the field of mono-handicap management lost much of their relevance when applied to the field of multi-handicap management.
The need to form multi-disciplinary teams was therefore a natural choice.
In light of the complexity of the issues that are raised, this multi-disciplinary approach requires that professionals adopt a different way of working together, i.e., a mode of collaboration in which the notions of "sphere of intervention" and "area of competence" are not defined once and for all, and in which each professional enhances his own knowledge and techniques through their contact with disciplines other than their own.
Management of the multi-handicapped child has thus come to reflect the multi-handicap condition.
The multi-disciplinary approach is not simply the result of the addition or juxtaposition of various approaches. Instead, it is a whole comprising of interdependent approaches, none of which is meaningful except in and through its relationship with the others.
Under no circumstances can it be considered as the mere addition of techniques used to treat individual disorders.
As was mentioned earlier on, the population of visually-impaired, multi-handicapped children is characterised by its extreme heterogeneity. Effective management of these children requires that healthcare professionals be appropriately trained and that they be able to work together in multi-disciplinary teams in a genuine partnership with parents.
Before presenting the major aspects of our programme, I would like to say a few words on early intervention.
The importance of early stimulation is now widely accepted. One of the most important tasks with which a baby is confronted in the course of its development is that which involves taking possession of its body in a process of construction of self.
During the sensory-motor phase of development, the baby not only learns how to take possession its body but also uses the latter as a means of acting on its physical environment and on others.
For a baby to take possession of its body it must be able to interpret the sensory information that impacts on its organism. Interpretation of this information is rendered difficult if the child's sensory apparatus is incomplete of deficient.
The interpretation of sensory information is also rendered difficult by the specific conditions that the vast majority of multi-handicapped children experience from birth (multiple hospitalisations; separation from parents; etc.), i.e., conditions of hypo-stimulation and/or conditions that are not at all conducive to their communicating with others.
As such, these children often find themselves in a passive role marked by a lack of participation, a refusal to communicate, the absence of interaction and an indifference to changes in their surroundings.
In some cases the child may become completely apragmatic, i.e., totally immobile, as if frozen, for hours on end. Their refusal to use their hands is one of the most disconcerting symptoms of this.
Unable to organise his perceptions, the child lives in a universe of sensations, auto-erotic stimulation and stereotyped movements.
First of all, therefore, the child needs to be provided with a sensorily consistent environment in which care should be taken to avoid overwhelming him with a mass of stimuli that he is unable to cope with (and which he may liken to the sensorial bombardments that he sometimes experiences and which account for the discomfort he expresses either by crying or by withdrawal.
Secondly, within this sensorily consistent environment, the child needs to be provided with stimuli that relate to his various fundamental needs, the idea here being to stimulate the child's responsiveness to his surroundings (i.e., to teach him to use his organs of perception) as his motor skills gradually develop. In other words, to cause the child to change roles from that of a passive, receptive subject to that of a subject who plays an active role in his development.
How is this accomplished in concrete terms?
Let me give you an example:
In order to construct (or reconstruct) his body image, a child needs somatic, vibratory, vestibular, visual, auditory, olfactory, gustatory and motor stimulation.
In each of these areas, the techniques and material aids used are highly specific (musical beds, vibrating toys, optical and light-emitting devices, scent boxes, ball pools, etc.
Certain techniques of massage (the Indian Shantala technique; reflexology) are also used to stimulate the child not only at a physical level but also at a relational level, bringing into play for the first time both reflexes and higher-order functions.
The use of techniques such as these have proven to be effective in soothing children prone to severe anxiety attacks and in alleviating problems of intestinal transit, an ailment which frequently occurs in infants and adolescents treated at the centre.
The presence of parents during these stimulation sessions is important for several reasons.
First of all, by the very design of the programme, which is geared towards achieving progress in the short term, parents are involved in a constructive experience. The second reason is that, by being present, parents are able to gain a better understanding of the techniques used, a situation which favours better communication between parents and healthcare staff.
The third, and by no means the least important reason, is that by being present, parents can progressively learn certain techniques. This allows them to be able to play an increasingly active role in the education of their children and provides them with an opportunity to channel their affective potential.
These parents are not merely onlookers: they play an active role during the sessions, learning certain techniques as they go along.
As was mentioned earlier, the aim is to give parents an opportunity to regain control of their own destiny as well as that of their child, in other words, to be able to play an active role in every sphere of their child's life.
After early intervention treatment - the importance of which can never be overstressed - children may be enrolled in an institutional programme.
Once again, due to the extreme heterogeneity of multi-handicap profiles and the complexity of multi-handicap management, the organisational structure of the institution and its manner of functioning must not only be consistent with each other but also effective.
The separation of children into three sections on the basis of age (infants, adolescents and young adults) is one of the main organisational features of the centre. Whatever the child's profile, the notion of belonging and the identification of needs and interests held in common with other children in the same age group should be taken into account.
The passage from one section to another, even though at first sight may seem artificial, is symbolic both for the child - for whom it is an implicit and explicit sign that he has "grown up" in every sense of the term - and for healthcare staff, whose projections require the existence of boundaries and objectives.
The organisation of sub-groups within these three sections are based on other criteria. While certain sub-groups are characterised by a certain homogeneity with respect to visual impairment (corresponding to the need for appropriate early sensory and psychomotor stimulation), in all cases, sub-groups are formed according to level and ability.
These latter notions - level and ability - are considered here as dynamic qualities: level, as a quality that will evolve naturally over time, and ability as potential that can be identified and used.
Each sub-group is therefore characterised by a specific set of techniques and methods addressing a specific set of skills.
We also allow healthcare staff to choose the groups they wish to work with.
This would be nothing more than an indication of a democratic or participative process in action if it did not also apply to those groups in which the most severe associations of deficiencies are to be found.
One could easily imagine that, because they were chosen by a particular team, children whose deficiencies are so severe that it is sometimes difficult to set the priorities of individualised programmes, benefit as a result from a high level of personal investment on the part of healthcare staff, a necessary condition for quality care.
Given the extreme heterogeneity of children's profiles and the severity of certain associations of deficiencies, priorities need to be established.
These include facilitating and developing:
as well as preparing children to lead an autonomous existence. The initial stages of this process are conducted within the confines of the establishment. However, the scope of application very quickly extends to include the immediate environment and then the child's original environment. The aim of the programme is to provide the child with an appropriate method for finding his way around so that he could lead as autonomous an existence as possible.
All of the ideas presented above form the basis for multi-handicap management at "La Pépiniere".
During the entire boarding period the Centre, washing, meal times, dressing and games are all approached with the same objectives in mind. The difficult transition from liquid to solid food is made possible by associating specific, technical movements (chewing; assisted swallowing) with a playful and communicative attitude and context. Bath time is as much devoted to personal hygiene as it is to learning to be aware of one's body, communication and pleasure.
Various thematic workshops pursue the same objectives while emphasising different aspects:
Another workshop worthy of mention is the Computer workshop where infants and adolescents can indulge in a number of activities (games, schoolroom activities, learning of Braille, etc.) through the use of suitably adapted hardware and software.
Finally, our presentation would be incomplete if we did not mention the particular conditions of management implemented for children suffering from degenerative diseases. When addressing the needs of children and adolescents whose disorders will inevitably worsen, adopting a technical approach, even the most specific, can never suffice for the elaboration of an individualised programme.
Only a high degree of personal investment on the part of healthcare staff, i.e., their ability to use their "emotional intelligence", can account for the fact that diseases with a theoretically sombre clinical outlook can, at times, go into remission or, better still, stabilise.
This enrichment of the theoretical and technical approaches to the management of children with degenerative diseases also includes the support that is provided to their families. In addition to preparing parents to cope with the death of their child or a general decline in his health, healthcare professionals encourage parents to elaborate and invest in a genuine project that does not take into account the long term and the expected outcome but rather the present and the short term.
These diseases pose very complex problems and require a specific approach to management when dealing with children whose condition is gradually declining (with all the repercussions that this has on the child's family).
The management of visually impaired, multi-handicapped children requires:
All of this presupposes a certain amount of intellectual curiosity, a willingness to learn and time. It also presupposes a willingness to make oneself available to others and a genuine openness with respect to others that is underpinned by the principles of modesty and tolerance and an on-going process of introspection to enhance one's authenticity.
I.M.E. "La Pépiniere"
rue Paul Doumer, 59120 LOOS, France
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