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THE EDUCATION OF CHILDREN
WITH
DEGENERATIVE CONDITIONS
[A Summary of a Longer Paper]
Illness and disability do not necessarily disadvantage a child;
but the way we treat them could.
David Wray
September 2004.
See also:-
Andrew: a journey a parents perspective. D. Wray and S. Wray.
Child: care, health and development. Blackwell Publishing.
(May 2004 / Volume 30 / Number 3.)
Children with Degenerative Conditions
THE FOCUS
Children with medical conditions have an increased likelihood of experiencing, at some time, or frequently, or constantly, a constellation of factors which may directly or indirectly place their education at risk.
If education is to be effective for children with medical conditions, education authorities, schools and staff must make positive responses to these issues.
Most establishments are ill-prepared in terms of experience and professional development and therefore of knowledge, skills and attitudes to take up and sustain the challenge in an in-depth way.
This situation is not brought about by malevolence, but is rather the outcome of ignorance and lack of systems to ensure that all children receive appropriate education.
It is actually this lack of focused thought on the part of the education providers and lack of preparedness to ensure quality education, rather than the actual medical conditions, that puts childrens education at risk.
Slightly adapted from;
The Education of Children with Medical Conditions.
Alison Closs. 2000.
Children with Degenerative Conditions
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
SECTION 1. SETTING THE SCENE
For most children, being ill is a transient episode causing temporary discomfort and mild disruption in their everyday activities. Attendance and progress at school are affected for a limited period only. For a minority, however, being ill is a major life event, which has a profound effect on their future; changing perceptions and expectations; dramatically influencing life-style and quality of life; and sadly for some individuals, threatening the very existence of life itself.
What is palliative care?
Palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social, and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement.
(ACT.97)
Why have palliative care in education?
The provision of education (in its widest sense) for children who are sick is essential in order to provide stimulation and improve their quality of life. It is also a legal entitlement and covers education at school, home and in hospital. This can add to the complexity of care provision but that in itself should not be a barrier, as the focus is the needs of the child and not resource, administration or personnel issues.
Why are children with life-limiting illnesses different?
The Royal College of Paediatrics and Child Health recognises that children with deteriorating conditions should be regarded as a discrete group with their own special difficulties within the wider group of sick children. They are a group of exceptional children, in exceptional circumstances, with exceptional needs, who require exceptional resources immediately (because later is too late; their condition may have worsened or they may be dead by the time provision is made).
(Niemann-Pick Family Support Group. 2000)
D and S Wray and Blackwell Publishing.
The Nature of the Educational Input:
One might assume that all the measures to deal appropriately with children with degenerative disorders are in place in an organisation which is overseen by a government department. However, that is far from the case. Perhaps the reason for this is that the nature of the educational input that is required for children with degenerative disorders is not fully understood by those responsible for planning and policy making.
When parents are considering their childs education, they are mindful not only of academic and performance related matters, but also of care, medical and quality of life issues. For a family whose life is totally affected and controlled by the childs illness, the quality of the childs school life assumes an enormous significance. A focus on academic issues, where care is a secondary activity, ignores the other end of the educational continuum where the emphasis is reversed. A stress on care and quality of life issues is as valid an educational approach as an academic one because it meets the childs changing needs and impacts directly on the childs ability to respond to any academic input.
Arent they too ill to receive education?
Children with degenerative conditions are often perceived as transients within the education system, quickly succumbing to the illness. This is not always the case. Some children go through their entire schooling suffering the effects of their condition and experiencing difficulties. Schools should not underestimate the difference they can make to the quality of life of these children. With careful planning, appropriate activities and sensitive teaching, the school can make a significant and very worthwhile contribution towards improving the life of the child. The teachers and support staff can also be content in the knowledge that their input has the double benefit of being therapeutic as well as educational.
Why isnt normal SEN provision sufficient?
They are a group with very special, special educational needs. They require a timetable, staffing, a curriculum, emotional support, understanding and an environment which is appropriate to their unfortunate situation of a differential reduction and then an eventual loss of specific abilities. This means that their direction of progress is running counter to that of their peer group and raises issues of curriculum accessibility and age/ability appropriate activities.
Schools are based on an assumption of pupil progress; they are now even judged and ranked according to the rate and success of that progress. Even the curriculum is structured in terms of attainment levels. A child who is regressing as a consequence of a life-threatening illness is the antithesis of that organisational and curriculum ethos. It is not surprising that both the child and the professionals working within the school feel challenged by the situation.
Up to now, SEN Codes of Practice have tended to be written exclusively in terms of continual progress with only temporary set-backs in the childs development. There now needs to be reference as to how children suffering from degenerative or life-limiting conditions can be helped to overcome their difficulties and how their very special, special needs can be met.
D and S Wray and Blackwell Publishing.
Are there any potential difficulties?
There are problems in trying to apply the statementing process to the situation of a child with a degenerative condition. This is because it becomes an expanding (and not a diminishing) document, with some of the objectives not being met.
Most input will be towards the end of the process as more and more information needs to be included and the width of the brief widens. The reviews become increasingly complicated. There is a greater emphasis on care and medical issues. The total number of people involved with the care process can increase considerably and a co-ordinating role is required. Much more pressure is placed on the parents as they are the only persons who have an overall integrated view. There is the potential for some conflict and stress. Staff may not recognise the unique nature of the situation and may see the parents as over fussy, when they produce increasingly lengthy lists of needs and care requirements. Parents, uncertain of the procedure and unsure as to the degree of detail required, can find the reviews increasingly stressful.
Also, the later descriptions of needs will differ greatly from the initial one.
Being a needs/resources/objectives model, the current statementing process assumes progress and therefore requires careful and flexible application when used in its present form on a child with a deteriorating condition, who by definition, will continually fail to meet set, progress oriented objectives.
D and S Wray and Blackwell Publishing.
SECTION 2. ACTION PLANS
What should each school do?
a) The school should recognise these children as a discrete group.
Given that the Health Service recognises children with life-limiting illnesses as a discrete group with their own special difficulties within the wider group of sick children, (palliative care teams and childrens hospices are practical examples of this), there should also be a similar recognition in Education of the very special, special needs of these children.
They should be acknowledged as a distinct group within the school and not seen as individuals within other, larger groups and therefore overlooked and not resourced.
Being within the recognised group should automatically trigger certain responses and initiate the provision of particular resources, for example, statementing, good home/school liaison, emotional support, and at a later stage, home tuition.
b) The school should plan ahead to meet their special needs.
Children with degenerative conditions are individuals at odds with the generally accepted organisational ethos of a school, which assumes progress in terms of age, curriculum, attainment and assessment. To overcome this difficulty, each school (whether special or mainstream) should establish a working party to look at the care/curriculum/medical /pastoral/ social/family issues that arise for children whose progress and development is largely negative as they regress, losing communication, mobility, fine motor and cognitive skills and drift out of contact with their peer group, into social isolation.
In addition, as time passes, the working party could collect, collate and disseminate current good practice with regard to the curriculum, environment and care issues in school for children with degenerative conditions.
A specific member of staff should be identified to act as a pro-active contact exclusively for these children and be the focus for the many medical/care/pastoral issues that are associated with a child with a deteriorating condition. The onus should not be on the parent to write out reams of instructions detailing day to day handling, feeding and changing matters.
c) The school should provide background medical and care information for its staff.
As many staff in mainstream schools are not familiar, in their current professional roles, with care and medical issues, it would be helpful if there could be easy access, by teachers and other professionals, to a database which describes degenerative, life-limiting and life-threatening conditions and lists the impact of the symptoms on the childs education and quality of life in school. This could then be added to by individual schools within the system and in the longer term, could form the basis of a LEA handbook of care and good practice.
D and S Wray and Blackwell Publishing.
d) The school should establish principles of procedure.
It is important that a holistic approach is adopted by all those working with the family and its individual members. Sick children do not exist in isolation; they are members of a family group that functions as a unit. All members of the family are affected by the illness and not just the sufferer. There should always be an awareness of the hidden issues associated with disability, long term illness and degenerative conditions. For example, the whole family functionally disabled by the enormous demands of caring for a child with a degenerative condition, with perhaps neither parent working and the issues this raises for siblings and their life styles, both in and out of school. This approach would help to avoid such things as the health problems of the carers being overlooked because of the focus being on the child, or the behaviour of the sibling not being connected with the stressful situation at home.
D and S Wray and Blackwell Publishing.
SECTION 3. HOME TUITION
a) The special nature of home tuition.
The provision of education (in its widest sense) for children who are sick is essential in order to provide stimulation and improve their quality of life. Education gives them confidence and reassurance and allows them a greater understanding of their world. It is also a legal entitlement.
The Advisory Centre for Education notes that there is a danger that home tuition may be refused by an LEA on the grounds that a child unfit for school is unfit for education at all (ACE June 1999). This overlooks the fact that there are many other reasons why an ill and disabled child may not be able to attend school but still benefit from home tuition, such as a susceptibility to serious chest infections, difficulties over school transport or supervision problems at school, associated with distressing, unpredictable and possibly life-threatening symptoms.
Home tuition for children with degenerative disorders is not an extension of school per se but is rather a unique service provision; a specially crafted resource to meet the needs of a child and family living under difficult, stressful and peculiar circumstances.
To support the situation, there needs to be an education team with a specific and dedicated role. To have maximum effect, they may have to cross orthodox professional boundaries. It follows from this that there are training implications, so that the support staff are adequately prepared for the very difficult task of working with children who are ill with a complex mix of symptoms, possibly disabled to some degree, experiencing learning difficulties and may be technology dependent. Thought will also need to be given to the organisational structure of the service, in order to give support not only to the service recipients, but also the service providers.
In some respects, this is a situation already met by Paediatric District Nursing Teams who, having trained and qualified within an equipped, resourced and professionally supportive hospital setting, with colleagues usually close at hand, must to some extent, re-skill themselves in order to operate successfully in a community (and domestic) setting, still working within a team, but with a greater degree of independence, professional autonomy and direct responsibility.
b) Deciding on priorities.
Every child has a basic human right to an education which allows them to access a better quality of life. The details of the provision and the strategies that are employed may be different with each individual, but the outcome should be the same.
There is an assumption that education is almost exclusively about skill and knowledge acquisition as a way of preparing the individual for their place as an independent and productive member of society. Although what is taught may prepare the child for the future, a lot of it is also relevant to the here and now, (a point that is often overlooked but is quite obvious in the context of the work needing to be appropriate to the age and ability of the child). For ill
D and S Wray and Blackwell Publishing.
children, their immediate world may be a little smaller than that of their peer group, but it is still important that they understand it and appreciate how it affects them.
c) What activities might be appropriate?
An issue for those providing home tuition is that although the range and nature of the activities may change and gradually become more restricted, variety is still required. Clearly the activities will be based on meeting an individuals emotional, social, physical, intellectual and spiritual needs, but there should also be an associated element of challenge, excitement and mystery, with some degree of interaction with the environment, which will vary with each child. A skilled and imaginative teacher will also be able to make use of unplanned serendipity events to add extra interest.
The experience of most teachers, whatever the age of the pupil, is that children perform best in tasks that make human sense, or have relevance to their world and their every-day lives. To exploit fully the educational potential of the teachers visits, it is important to encourage the child to use as many everyday skills as possible, particularly those that are likely to be affected by the condition. This will help to maintain specific muscle and nerve functions, general coordination abilities, overall activity and awareness levels and independence. The more varied the experiences, the greater the likelihood of skill transference from one situation to another. The development of personal qualities is also important as that has both an immediate and long term use.
Practical activities are always worthwhile. For example, art and craft work is a useful activity that children enjoy. It is relaxing and it allows conversation and cooperation with others. It may be two or three dimensional, done independently or with the help of the carer. The children can be involved to varying degrees, depending on their abilities and how they feel on a particular day. For children with severe motor problems, whose direct involvement may be limited, it might require the use of strategies that enable them to be represented in some way, in the project. For example, by using finger, hand or foot printing, a composite picture might be built-up and the child can then clearly see that they are part of it and therefore have a sense of involvement and ownership.
There is a hidden value in that not only do they contribute to a finished product that they can handle, look at and show visitors, but it can also form the basis of future interaction and praise, by being displayed in the childs room and its qualities commented on by visitors. In the longer term, the child will also be able to reflect on their involvement and when the child dies, it is an item that the parents can keep.
Other activities, appropriate to the childs gender, age and ability, might include reading and story telling, music therapy, water therapy, television programmes, trips outside, visits to a swimming pool or other similar facilities, massage, toys, games and involvement with other children and young people.
Within each activity, there is scope for variations in the way the topic is presented. Also they can be combined in different ways. The essential element is the individual teachers style and manner of presentation; their ability to create another world to that of illness, pain and
D and S Wray and Blackwell Publishing.
discomfort; another strand to the childs life; something different to reflect on, look forward to and mark the days and weeks by.
d) The importance of contact with other people:
Contact with and knowledge of other people will positively add to the life of the child; just having a friendly and enthusiastic adult in the room will immediately catch their attention; children will see things with fresh eyes and this new experience will add an extra dimension of excitement and interest, even to previously rehearsed activities, giving any teacher an immediate advantage.
The teacher can function as an interpreter and mediate between the child and their surroundings. A steady conversation to accompany everyday activities that the child finds difficult, for example drinking, can be worthwhile if it assists the child and offers an opportunity for praise. It will serve to make the child feel rewarded, valued and the centre of attention. This can also apply to the wider range of less routine activities that result from the teachers input.
As well as providing a range of interesting activities, there is also a need to provide as stimulating an environment as possible. The surroundings need to be quiet, warm and well lit, with plenty of natural daylight. The ceiling could well be a focus for objects and pictures; luminous planets, brightly coloured fabric shapes which move in a draught, either from an open window or a fan. Also wind chimes, moving lights on the ceiling and walls or reflective, reciprocating and rotating devices will all catch the childs attention.
D and S Wray and Blackwell Publishing.
SECTION 4. THE PARENTS, THE SIBLINGS AND THE ILL CHILD.
The Parent Carers
The caring situation results in varying degrees of depersonalisation, brought about by:-
Lack of sleep.
Loss of privacy and personal space.
Loss of the opportunity to be creative and reflective.
Loss of freedom of choice in personal and family matters.
Loss of leisure activities, including holidays.
Social isolation.
Although a lot could be said about any of the problems listed above, perhaps the most difficult to cope with is the combination of disturbed sleep patterns and inadequate sleep. It is not surprising that there is a sense of unreality about the world in which carers live.
The Siblings.
The impact on siblings of having a brother or sister with a life-limiting illness is frequently overlooked. This is largely because the focus of attention is on the ill child in an attempt to provide and maintain as good a quality of life for them as possible.
Many of the difficulties encountered by the parents will also have an impact on the children. Like them, the siblings also suffer a restriction of freedom, gradually lose a member of their family with whom they still live, have to accept additional responsibilities, do not have a normal, (as perceived by their friends) home and life-style and have to deal with the death of a close relative.
For the siblings however, life still goes on. For the younger children particularly, they are at a formative age and there are future consequences to their current experiences. The way in which they are guided through the unfolding events will shape their reactions to future circumstances; opportunities taken or missed now will return later to influence the childs adult world.
The Ill Child.
Children with deteriorating conditions have their own very special, special educational needs. They require a timetable, staffing, a curriculum, emotional support, understanding and an environment which is appropriate to their unfortunate situation of a differential reduction and then an eventual loss of specific abilities. This means that their direction of progress is running counter to that of their peer group and raises issues of curriculum accessibility and age/ability appropriate activities.
D and S Wray and Blackwell Publishing.
The ill childs perspective:
It is helpful to see the world from the childs perspective of the bed or the wheelchair.
They are at a lower level to those around them and normal social contact is based on an assumption of similar face levels. People are unconsciously unsettled by the asymmetric positioning; it is at odds with their everyday experience of balanced interaction and effective links may not be made.
The children are slightly distanced by the wheelchair and certainly by the bed and this affects interpersonal spacing. When the child is in hospital, the situation can be made worse by bed-sides and by lockers or equipment being positioned at the side of the bed.
If they require support to maintain an upright position, then they are also to some degree enclosed and this makes physical contact of a supportive nature difficult. The back and shoulders are usually used when showing concern or giving emotional support and this is largely precluded if the child is in a wheelchair or bed. For younger, distressed children, it is difficult for the parents or the carers to give them a supportive cuddle.
In addition whereas an ambulant child would be able to either stand up or back away if they felt uncomfortable or threatened, this is not an option for a child in a bed or a buggy.
Difficulties can also be caused by the unnecessary elevation of items of interest, work surfaces, equipment, control mechanisms and switches.
Although the above points may seem obvious, the childrens everyday experiences reveal that they are not commonly recognised.
The Environment:
The environment needs to be warm, quiet and well lit, with as much natural daylight as possible. It is helpful if the room is visually stimulating with some of the displays (or effects) being active, either through auditory, visual or tactile change or by changes in orientation or location.
There needs to be the opportunity (and equipment) for individuals to be able to change their positions at frequent intervals throughout the day; standing, sitting upright, reclining, prone, or lying sideways.
Individuals who;
are in pain,
are sensitive to handling,
suffer from disorientation upon being moved,
or have sensory or perception problems,
need to be handled, lifted and moved in a way that does not cause unintentional distress or pain.
D and S Wray and Blackwell Publishing.
The long term, cumulative effects of repeated daily trauma, even though each incident may seem minor, are devastating and should not be under estimated.
The lay-out of the room and the relative positions of (and distances between) equipment, zones and services requires careful planning to avoid the problems above.
The Setting:
The individual needs to be in a quiet, friendly, happy, and caring setting. The staff need to be patient, respectful and attentive throughout the whole day, because of potentially serious medical problems. (PMLS Ethos. Leeds LEA) They must be adequately supported and resourced so as to be able to allocate specific periods to the needs of the individual.
Privacy and respect when personal needs are being attended to are important as loss of abilities or the appearance of new symptoms can cause embarrassment and distress. Personal preferences need to be recognised and choices given whenever possible. (PLMD Ethos. Leeds LEA)
The time scale of a child with a degenerative disorder is far more compressed than for other children. Clearly this has implications.
If by some act you may do a little good,
then do it now,
for you may not pass this way again.
Slow down a little please.
Degenerative conditions, particularly as they progress into later stages, can impair some cognitive and perceptual processes and there is an increased need for the individual to be given time to absorb information and accommodate to new circumstances; thus it is helpful to give lots of preparatory warnings of some anticipated event and maintain a commentary to explain the change in circumstances. Rapid rates of change are also difficult for them as it may outpace their ability to follow what is happening.
Dont suddenly move my wheelchair * and please lift and
transfer me slowly.
or
Your steady walk, pushing me down the corridor, may be
far too fast for me and become a terrifying journey.
or
Give me time to eat and drink.* I cannot do it quickly.
My swallow function may be affected and I could choke.
(*PLMD Ethos. Leeds LEA)
Respecting the individual:
It is important that the intellectual abilities of individuals with degenerative disorders are respected. They have not always been as they are now and any deterioration is likely to be
D and S Wray and Blackwell Publishing.
selective and differential. Although they may have difficulties with outward communication, they are often fully aware of the communication of others and will still be using the many interpretive skills that are associated with the apparently simple act of verbal communication; for example noting facial expression, intonation, attitude and manner, body language, posture and position in space relative to the listener.
Belief in the child reinforces their self perception of being important, respected, trusted and held in high esteem. The child will see from the actions of those about them that they are valued as individuals. In addition, if the assumption is made that the child does have an understanding of what is being said to them and an awareness of what is happening around them, then this will ensure a constant flow of sensory information which will engage and stimulate them.
Awareness assumed is awareness maintained
Language skills:
Children with degenerative disorders might well start to experience difficulties with the interpretation of language, particularly if it involves abstract concepts. They seem to find it easier working in concrete terms. For example, open ended questions involve too many stages for the child to be able to formulate a response. Closed questions, with the subject in front of them, are much simpler.
Impaired vision:
One of the difficulties which may face children in the later stages of a degenerative disorder is impaired vision. Increasingly poor coordination can result in double vision, problems with tracking moving objects and difficulties in focusing or refocusing quickly on a point in space. This may be superimposed on an already present visual problem which is symptomatic of the disease. This can result in blurred, unidentifiable figures or faces, suddenly appearing from nowhere within the childs field of view and then, equally quickly, disappearing without warning. For a child whose world is already limited by restricted head movement and general loss of mobility, losing the ability to scan and assess the immediate environment can be very frightening.
If the carers are aware of these difficulties then they can compensate by giving clues to their identity and their intended activities by allowing the child to use their other senses. If they all follow the same few guide-lines it will make the childs life a little more understandable and make them feel more secure and comfortable.
The Leeds Visually Impaired Service suggests that the guide-lines might include:-
Greeting the child by name and the carers saying who they are.
Giving explanations and maintaining a commentary.
Making sure their face is within the childs field of view when talking to them.
Allowing the child to touch and smell a product before it is used, in order to reassure them.
Consistent use of perfumes to aid identification.
Using a touch, stroke or gentle word as an addition to a smile, in case it cannot be seen.
D and S Wray and Blackwell Publishing.
Care also needs to be taken over the positioning and brightness of lighting. Difficulties can be caused by glare from ceiling lights or by bright sunlight coming through windows. Consideration needs to be given to the relative positions of the bed and the windows to avoid the carers being back-lit. It is better to have artificial light sources, controlled by dimmers, positioned behind the child.
Quality of Life:
It is important that opportunities are created for individuals to be the centre of attention for a while. Being noticed will enhance their self image and greatly improve their feeling of well being, an important factor in their personal battle against the symptoms of a life-limiting condition. This can also be associated with positive feelings of fun, happiness, excitement and being someone special.
Although there is a general need for a quiet, structured atmosphere, there is an equal requirement for changes of pace, style, location and activity, in order to provide stimulation and excitement. Often, pain and discomfort can be forgotten for a while if there is an interesting distraction.
I need the opportunity to be occupied*
(*PMLD Ethos. Leeds LEA)
Many children with deteriorating conditions enjoy watching television, possibly because it provides a vicarious experience of real life, thereby overcoming the constraints imposed upon them by their condition. A child watching a programme involving other children is given the contact and experience sadly so often denied them in normal social situations because of the caution exercised by their peer group.
Please anticipate my needs:
A good carer will have an empathetic relationship with the individual and check regularly whether or not:-
A change of bib, clothing or pads is needed.
There is discomfort. Would a change of position help?
Medication is due.
A drink, food, or moistening of the mouth is required.
The carer needs to take every opportunity to help the individual to understand the apparently changing world about them. As the condition advances and their perceptions are either dulled or subjected to distortions, the individual can become very anxious and will require reassurance as to their safety.
Maintaining Contact:
As the condition advances, there is the potential for the child to become trapped inside an uncooperative mind and body. This raises an issue of emphasis with regard to communication.
D and S Wray and Blackwell Publishing.
Where should the focus be; on the child who cannot speak or the listener who may not understand?
It might initially appear that children who have lost their ability to speak should be taught other, recognised methods of communicating. However they may have impaired cognitive and motor skills which may well preclude this.
The emphasis on the transmission of information overlooks the role and the skills of the receiver. For the perceptive carer, there are a host of cues which can give some indication of the childs physical, mental and emotional state and even of their thoughts and wishes. General indicators are posture, verbalisation and facial expression. More specific, body language indicators include gesture, positioning of head and limbs, degree of eye contact, muscle tenseness and the movement of eyes, eyebrows and lips.
In addition, holding the childs hand can give reassurance and allow back and forth acknowledgement, usually by a slight movement of the fingers or a gentle increase in pressure, linked to speech, facial expression and gesture.
Although the links are limited, they provide a means through which the child can communicate. This will help them maintain a positive outlook and help to reduce any feelings of isolation. These children do communicate and are often shouting silently at the world. Those about them need to be sensitive to this and have the skills to hear what they are saying.
Summary.
The general aim, whether at home or school, is to provide a settled, happy and stable environment in which the individual can participate in a largely sensory curriculum, offering a range of experiences, some intended to relax and others intended to excite. Overlaid on this, is the individuals physical state at any given time, which will to a large extent, control the nature of the activity.
A trained and experienced professional, with their knowledge, experience and skill can make an important contribution to maintaining the quality of a childs life and ensuring that the later periods are filled with interest, excitement and happiness
D and S Wray and Blackwell Publishing.
SECTION 5. A CONCLUDING THOUGHT
For children with a life-limiting condition, education has an extra dimension. For them, it is a once only event; there is no second chance; they cannot return to it later in life.
This places a responsibility on all those who make a contribution to the education of the ill child, to ensure that they provide the high quality of service that these children deserve within their shortened life-span.
For them, a rewarding and enjoyable educational experience will be something they do remember for the rest of their lives.
David Wray. September 2004.
POSTSCRIPT
Educational disadvantage does not arise directly from the illness, learning difficulty or disability suffered by the individual: it comes from the misperceptions of those who seek to serve that individual. Restricted thinking resulting from indifference, ignorance, misconception, or inappropriate attitudes produces restricted outcomes.
Disability can exist only in the mind of the observer. For the sufferer, their reality is the norm.
D and S Wray and Blackwell Publishing.
TEXT REFERENCES
The Education of Children with Medical Conditions.
Alison Closs (2000).
Children's Palliative Care Services.
Joint Working Party Report of the Association for Children with Life-threatening or Terminal Conditions and Their Families and the Royal College of Paediatrics and Child Health. (1997).
SEN Code of Practice.
DfEE. (1994).
An Ethos For Those Who Have Profound and Multiple Learning Difficulties.
Leeds LEA.
ACTNOW. Spring 1999.
Avon Life-time Services. (1999)
Complete Family Health Encyclopedia.
The British Medical Association. (1990)
Supporting Parents caring for a Technology Dependent Child.
National Primary Care Research and Development Centre. (July 1999)
Leeds Visually Impaired Service. (2000)
Andrew: a journey a parents perspective. D. Wray and S. Wray.
Child: care, health and development. Blackwell Publishing.
(May 2004 / Volume 30 / Number 3.)
Niemann-Pick Disease Group (UK)
Help line 0191 415 0693 or 0161 929 2414.
D and S Wray and Blackwell Publishing.
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