Sibling of Disabled Child at the Inclusive School
Received: 13-Apr-2018 / Accepted Date: 23-Apr-2018 / Published Date: 26-Apr-2018 DOI: 10.4172/2161-0711.1000609
Abstract
The support provided to families with disabled children is exclusively focused on the disabled child or his/her parents. Although current trends emphasize the need to work with the family as a system, minor siblings are usually at the margin. My article paid attention to joint education, which is the situation when the disabled child attends the same school that his/her "healthy" sibling does. The study was aimed to find out whether the teachers at such schools know that the children in their class have a disabled sibling at the same school, how they treat him/her with respect to the relations with classmates, what responsibilities is the child assigned by the teachers and the parents in connection with the help with the education of the disabled sibling. The research done through a self-structured questionnaire took place at 32 schools where disabled children and their siblings attend inclusive education. The study result was sad. The detailed analysis of the findings showed that most teachers do not know that the child in their class is the sibling of a disabled child going to the same school. That means that they never spoke with them about that topic, they never expressed understanding of his/her difficult life situation, they did not help in case of conflicts with the classmates, they did not support him/her.
Keywords: Family; Environment; Personal growth
Introduction
"The family is characterized by a common history, current reality and future expectations of interconnected transactional relationships" [1].
A family with two or more children consists of two main subsystems:
• The marital (or partner) subsystem, which includes everything that affects the development stages of the family, for example the way in which the partners make joint decisions, the way they support each other or how they make plans or solve problems,
• Sibling subsystem in which children learn to support each other, compete, tolerate, but they also learn the skill to negotiate a compromise.
Both subsystems work in harmony, and breaking one of them can cause the instability of the family. According to the research results of Giallo et al. [2]. The quality of relationships between siblings is most influenced by a high level of family cohesion and adaptability, good communication and willingness to solve problems. The results of this research emphasize how important it is to work with the whole family system.
Functionality of the sibling subsystem is influenced by many factors, These include for example the developmental level of the individual and adequate current tasks solved, life experience, personal qualities, environment of family and relationships. The birth order in the family also plays its role, according to some research.
Functionality of the sibling subsystem is influenced by many factors, These include for example the developmental level of the individual and adequate current tasks solved, life experience, personal qualities, environment of family and relationships. The birth order in the family also plays its role, according to some research.
The firstborn have a stronger motivation to achieve success than their younger siblings. The younger children usually have privileged status, they are protected, they glide throw tough situations more easily then elder siblings. If there is a child born without disability after a disabled firstborn, in many cases the role switches and the younger child is treated as the firstborn.
Professionals have paid attention only to parents and children with disabilities, not to healthy siblings. They have stood outside their attention, as if they weren’t part of the family system.
The most attention was paid to the ´parent-child with disability´ subsystem, and later to the partner subsystems, but the sibling subsystem or the parent-healthy sibling subsystem were left aside. It is necessary to realize that siblings are those with whom the child with disability has the longest relation in life. Family counts on their help automatically, they do gladly help, but their own developmental needs are often overlooked.
Congenital or acquired disability of a child is a critical test of the adaptive abilities of the whole family, including siblings, grandparents and friends. The sibship with a child with disability is accepted in different ways throughout the life.
Healthy siblings tend to be overloaded and at the same time mentally neglected, because they are simply healthy and 'independent [3]. Gradually most healthy siblings adopt a dominant protective role in the sibling relationship, including the "need to support and protect the sibling with disability". It is important, that such demanding life situation gradualy becomes an integral part of the identity of the healthy sibling.
Mental needs of the siblings of disabled children
The families often expect that the siblings of children with disabilities are free of problems having no disability. The family is often exhausted by the care for the child with a handicap; the mother is often tired and focuses on the child that needs special care, so she isn’t able find extra energy to show patience and love to the healthy child that usually behaves with maturity higher than his/her age.
Nevertheless, even the healthy child faces chalenge throughout his/her life, too. The parents are often unware of placing high demands on the healthy child, especially on his/her independence and they do not notice that the healthy child may be developing the feeling of injustice and low self-confidence due to being ignored by his/her parents.
If we look at meeting the needs of the healthy siblings from the perspective of A. Maslow's hierarchy of needs, we can find the following problematic experience:
Physiological needs
The ultimate level in physiological needs involves a state of harmony of the body including “feeling good” in one´s/my body due to the demanding care for the child with disability, the satisfaction of physiological needs of the healthy siblings is often neglected and parents don’t pay enough attention. Healthy siblings often do not have space for rest, choosing their leisure time activities is problematic and often does not come in the quality needed.
Safety needs
This group includes feelings of safety, security, stability, reliability, freedom of fear, anxiety and chaos. The needs of structure, order, law, limits, feeling of safety and out of danger are included too.
If parents are too absorbed by the demanding care for a disabled child, they often do not realize that the healthy sibling does not get what he/she should in sufficient extend. Healthy siblings often face situations which normally require high level of independence and for the solution of which they might not be developmentally mature and prepared. The satisfaction of such needs may be prevented by too high demands of the parents who expect that the healthy sibling will "compensate" the insufficiencies of their disabled child. This results in the loss of the feeling of safety and security for the healthy children.
Needs of love and belongingness
This group includes human desire and need of socialization, friendship, love, trust and acceptance. Lack of satisfaction may affect the individual's mental health.
In siblings of disabled children, the need of love is often insufficiently satisfied, because the parents do not have the strength to give them love parallelly with a difficult care for a seriously disabled child, or they may feel that the healthy sibling does not need manifestations of love, because he/she is stronger and more mature than usual standards of the given age. Lack of satisfaction is confirmed by adult healthy siblings), who have kept memories of lack of parents' attention, regret, and isolation within the family. Other studies [4,5] confirm this fact; from the sibling's perspective, disabled children are the sun of the solar system of their parents and they are only an invisible part of that system. As Bendor describes, some of the interviewed individuals are afraid to speak about such experience and they have kept feelings of anger for as long as twenty years later and they feel very guilty about it.
Esteem needs
Esteem needs still belong to the group of lower needs; they must be satisfied to achieve harmony. They include the need of success and respect (esteem, status, regard), but also the need of self-respect, selfreliance, attention, praise, public appreciation of good performance, and being charged with responsibilities. The satisfaction of such needs builds self-confidence, perception of self- value and feeling of respect from others.
The satisfaction of those needs has a special position in the life of healthy siblings. On one hand, it doesn’t even occur to parents to thank for help with the care because they consider it automatic; on the other hand, there is much less praise for the help and much less attention paid to the their own activities, which aren’t related to the disabled child. The healthy siblings need to know that their parents appreciate their help, that they consider them as important family members, whom they love and whose opinions, help and fears they take seriously.
All the more the healthy sibling should feel as a part of the family, the less they feel to be a part of peer groups. Studies show [4] that the healthy siblings are more often punished by parents; the parents tend to be less tolerant if the children do not get involved in a required activity or if they want to avoid responsibility, which is typical of some developmental stages of healthily developing individuals. It is seen as unfair, especially if parents tolerate unacceptable behaviour of their disabled siblings.
Parents often expect better results from healthy siblings, which may not correspond with their capabilities or interests. Pressure from such parents, which compensates the limits of the disabled child, may provoke revolt and anxiety in the healthy siblings. Parents and service providers should pay great attention to the siblings who are compulsive or neurotic in their effort (for example due to their dissatisfaction with school results) or to those who are unhappy despite their obvious success.
Self-actualization needs
Abraham Maslow defines self-actualization needs as "the human desire to be more and more better than he is, to be everything a human is able to be". This category includes cognitive needs (the need of knowing, understanding, growth), aesthetic and self-actualization needs making use of personal capabilities and potential into practice, talent, personal growth and experience.
The healthy siblings need to satisfy their need to understand the family situation all the time; throughout different developmental stages, they need to get adequate information about handicap of their sibling and about the related symptoms, limitations, but also the potential for growth and abilities..
In this context, the need for rest and entertainment is often not satisfied; parents charge the healthy child with too many duties and do not provide enough space for his/her activities. These families often lack the joy of leisure time spent together, of sharing pleasant and positive experiences. The support of healthy siblings activities and ONLY HIS/HER acitivities do not relate to the care for the disabled sibling and usual parents' "worries", is missing completely.
Risk to the mental and personal development of healthy siblings
Studies [4,5] in-depth interviews and work with groups of healthy siblings resulted in identifying 4 categories of unusual life experience that present great risk to the mental and personal development of healthy siblings. These are:
• Over identification
• Embarrassment
• Guilt
• Isolation, loneliness, hopelessness.
Over Identification
Over identification occurs, if the sibling starts to ask him/her seriously, whether they have similar symptoms as the disabled/ill sibling or not and consider, whether the same fate lies ahead of them. Such mostly irrational fears may look very realistic, particularly for small children who often lose themselves in "magic thinking", and if the immature concept of "contagion" emerges in them, they really believe it. If it is not proved wrong by parents or advisors, it is deeprooted in their self-concept and later, in a higher developmental period, the doubt whether it really is the case may still persist. Excessive identification is more probable if the handicap is mild or "invisible" (epilepsy, cancer).
Children must be continuously provided with information in a way adequate to their age and to their level of thinking and reasoning.
Embarrassment
Embarrassment is another category that presents potential risk for the personality development of the healthy sibling. Embarrassment is more frequent if the handicap is "invisible", particularly if it shows by peculiar behaviour that attracts attention of other people (e.g. shouting dirty words at passers-by, sudden attacks of anger, faces, etc.). Such symptoms are perceived by the siblings in a much more negative way; they are much more ashamed of such a sibling than of a sibling in a wheelchair who sometimes makes some sounds or of a blind sibling whom they lead along the street.
Siblings also experience great embarrassment, if people-friends, schoolmates, strangers-ask them about their disabled siblings. Even if they have the information about the handicap, it is difficult for them to decide how to answer not to hurt their sibling, themselves or their family.
Sometimes the siblings carry their painful experience of shame on to adulthood; even many years later, they are ashamed of the feelings of shame they experienced in childhood when a classmate or a friend met them when they picked up the disabled sibling from the day-care centre or when they went for a walk or to the cinema with their family.
It is important to analyze the causes of embarrassment. If there is anything that could diminish the shame and embarrassment, the parents should do it. If the healthy sibling is in a critical age, they should provide him/her with his/her own space, give him/her some freedom and wait for him/her to come wishing to help them with the disabled sibling and to engage in common activities without urging.
The healthy sibling needs enough information to be able to overcome embarrassment. It is important to admit that sometimes the parents experience embarrassment too, that it is a natural reaction. Banning the healthy sibling from embarrassment and shame of the disabled sibling's behaviour or appearance ("He is your brother! You shouldn't be embarrassed because of him!") will contribute much more to the development of feelings of guilt and anger rather than to reduction of the embarrassment.
It will also give the child a dangerous information that he/she cannot unload his/her troubles onto his parent’s shoulders. On the contrary, if the parents admit that they also have problems to cope with everything then not only do they reflect the reality but also signal to the siblings that they can freely speak about their feelings with them.
Guilt
Healthy siblings experience guilt much more frequently and deeper than their peers. Guilt arrives in different forms. They may feel so called "survivor's guilt" for having caused the sibling's handicap or disease, guilt for being healthy, guilt for having some excellent capabilities and skills or sometimes for not having only caring and charitable feelings towards their sibling.
The siblings, whose parents plan in advance, from their childhood on, that one day, it will be them who will take over full care for the disabled sibling, feel guilty too. Such parents' planning of the siblings' future, regardless of their potential and plans, breaks their self-concept in the long term, particularly if something tells them that the future could be different.
Isolation, loneliness, hopelessness
The sibling‘ experience shows that feelings of loss and isolation are more than frequent; even very resistant children perceive painfully their difference when confronted with the surrounding world of friends, classmates and the teacher. This loneness comes especially in families with two children, when the healthy sibling misses somebody to share ideas, hopes, dreams, joy and worries with.
The healthy siblings most frequently felt completed isolation from their parents and their family at the moments when difficult health condition/ handicap was confirmed. It is important to understand that that period is difficult not only for the parents but also for their healthy children who need much more, and not less support. The parents, overwhelmed by the situation, are too exhausted to be able to notice the "call" for help of the healthy child and his/her needs [6].
Adult siblings involved in sib shops and studies usually grew up in families where their siblings' handicap or diseases were only rarely discussed. Some siblings see an explanation in the assumption that their parents wanted to protect them from stress and sadness, and therefore they spared them by giving them not any information about their disabled sibling. Another explanation is for cases of "invisible diseases", for example epilepsy or schizophrenia which was such a stigma, so that the parents tried to keep the problem a family secret. The topics tabooed outside home are often tabooed at home too, so the siblings feel alone with their questions and observations.
Regardless of the reason, insufficient communication with the siblings leads to their great loneliness. The fact that the parents do not provide their children with information, such protection and sparing them the fear may result in general misunderstanding of the problem and contribute to the child's feeling of being part of the family but only at its margin.
School Life of Siblings of Disabled
The sibling of a disabled child at school age may experience several modes of coexistence:
Disabled sibling is at home because of a serious handicap, and it is often the mother who cares about him/her all day
What differences does a healthy sibling experience comparing to his/her peers?
• They usually do not invite friends-classmates to their home, as they would have to explain too many things
• Their mother is often very tired by the care for the disabled child and she does not have enough energy for the healthy siblings; they therefore must rely upon themselves much more
• They often feel ignored, insufficiently appreciated; they feel that the parent does not see their efforts-they are appreciated for only not adding to his/her worries, which the siblings may see as great injustice
• They usually can freely take their own leisure time activities, but their parents do not have time to support them (for important football match, bike competition)
• The selection of family holidays is influenced by the potential and needs of the disabled sibling, not by the actual interests or wishes of other members of the family. If the parents decide, that they will take respite care and leave for holiday without the disabled child, such holiday is often more broken by worries about what is going on at home than by joy.
• Sometimes the siblings may face aggressive behaviour of the disabled sibling who aims it either directly on the sibling or indirectly on his/her parents. They are helpless in such cases; they cannot help, and if they are worried about their parents and defend them against the attack, they are subsequently punished by them.
If the disabled sibling goes to a special school in the place of residence, what experience can the healthy siblings have?
• They invite home only very good friends to whom they must explain their family situation and they must be sure that their friends are reliable and won't use it against them
• They must be prepared for the reactions of other people if they accompany the sibling to the special school
• They must subordinate their leisure time activities to the family schedule of picking up the disabled sibling and his/her preparing for school, if the sibling is involved in it. Sometimes, the parents even require siblings to spend all leisure time together with the disabled sibling and ban them from their own activities.
The disabled sibling must go to a special school off town, living in a boarding house on weekdays and coming home only for the weekends. What does it mean for the healthy sibling?
• The family life is disrupted if one family member is missing - the siblings must often cope with the parents' complaints that the disabled sibling is not at home, that they miss him/her, the mothers often cry and try to compensate it at the weekends (spoiling style of up-bringing), often at the expense of the healthy siblings
• on the other hand, social relations of the healthy siblings are not affected; they bring their friends home, they can spend their leisure time without restrictions and the parents have time to support them
• They must be prepared to explain where their sibling is on weekdays - the children often invent stories about schools for talented children that are not in their town, to avoid explaining the essence of the handicap.
The disabled sibling goes to the inclusive school together with the healthy sibling
• And here let me pay special attention to this situation. How can this situation influence the family life and the personality development of the healthy sibling?
• The analysis of how the healthy siblings experience such situation was the main goal of the study I made in 2014-2016.
• Of 120 approached schools in the Czech Republic, I got a sample of 32 inclusive schools that educated a disabled child among with their sibling in another class. Such given criteria reduced the target group, but they brought relevant information that helped to answer the defined research problem. Needless to say that everything took place with the consent of the children's parents.
• The questionnaire included open-ended questions and focused on the teachers of disabled children and on the teachers of healthy siblings of such children. As their open statements showed, several factors were identified to have a potentially negative impact on the mental development of the healthy siblings, instead of supporting it within the inclusiveness.
Three concepts of involving healthy siblings were identified on the part of the teachers of disabled children• the healthy sibling as the main communication partner: the teacher considers the sibling as a communication channel to the parents: through the healthy sibling, they send different information to the parents, such as preparation of the disabled child for school, his/her school results, problems related to getting around inside and outside the building, the need of compensation aids, necessary preparation of study materials, problems with involvement of the disabled child in leisure time activities within school, school trips, etc.
• the healthy sibling as the teacher's helper: they ask the sibling (regardless of the sibling's own duties or wishes) to help with moving between classrooms, to the school canteen, to the school club, they condition the disabled child's participation in school trips, school events, leisure time activities by the sibling's participation
• the healthy sibling as the teacher's advisor: the teacher considers it useful to ask the healthy sibling for advice on how the disabled child should be treated, how to best explain things to him/her; they ask the sibling to give consent that they do not need to do something with the disabled child; in case of school assistants, they use the siblings to train the assistants.
The siblings' teachers
In 62.5% of cases, the teachers did not know that they had a pupil in their class who had a disabled sibling at the same school. The remaining teachers had such information, but they did not pay any special attention to such children, they did not support them. They only excused them from lessons, late arrivals or school events they could not join due to the care of the disabled sibling in another class. It was sad to find out that not a single teacher explained anything to the class; they excused the sibling without giving reasons to the class, or even made the sibling's situation worse by saying things such as: "we can't require anything of him now that he/she has such a difficult situation at home".
The siblings (20 respondents, 11 girls, 9 boys, age average 12.6 years) whom I subsequently interviewed consider the common education the most difficult test they have had to manage in their life with their disabled sibling. Three of them were even bullied in their classes („You have no right to say anything if you have an idiotic brother“...) but none of them confided it to anybody. They did not want to make things worse for their parents, and they did not want to tell the teachers to avoid making things worse in their class.
As was stated at the beginning, the care for the disabled child always comes first. But what does that mean to the siblings, and what is my experience if the processes in the family are not professionally influenced?
• the sibling gets up earlier in the morning to prepare himself/herself and the disabled sibling for the way to school (breakfast, snacks)
• they set out for school much earlier to be able to enter before the entrance is crowded=he/she then comes first to the classroom and waits for the others to come, he/she does not have opportunity to "stroll" to the school as the others do, to hang around with peers outside the school building and discuss the children's matters
• during classes, he/she is sometimes called to the class of the disabled sibling to receive a message from the teacher for the parents or an explanation what must be revised with the disabled sibling at home; the teachers often complain about what the disabled child did or did not do
• the sibling must help although he/she wants to do something else at the moment-if he/she does not want to cooperate, it will provoke very negative response from the teachers and subsequently by the parents, including reproaches such as it should be at least them who could spare them problems
• if there is no assistant at school, the sibling often must accompany the disabled sibling for lunch - which deprives him/her again of spending time with his/her classmates, which is very important for children of each age
• during breaks and sometimes even during the lessons, they are called from their class to the class of the disabled sibling to help with something
• in most cases, they stated to have missed the school trip with their class as they had to help in the disabled sibling's class
• they usually have to go straight home from school with the disabled sibling, or accompany him/her to leisure time activities, to rehabilitations, to therapeutic activities where they sit and wait to take them home
• if their parents work, he/she must prepare for school not only himself/herself but also with the disabled sibling; he/she often must explain some schoolwork to the sibling that was not explained by the teacher (I saw siblings who made aids for their blind brother to help him to better understand physics)
• when the parents come home, he/she must give them good and bad news from teachers; they often report such news more sensitively than they were formulated by the teacher to avoid hurting their parent’s feelings
• he/she has very little space for his/her leisure time activities; they usually include organized activities; he/she misses leisure time meant only for him/herself
• He/she must cope with being laughed at by classmates or schoolmates; with having to choose friends by how much they are able or willing to accept his/her life situation (and adolescents expressed fears that it could also influence the choice of their life partner or job).
Summary
What can the siblings perceive as stressful?
• The required higher degree of self-reliance than that adequate to their developmental level;
• due to excessive care for the disabled sibling, they feel shortage of natural emotional and social support from their parents;
• Assumption of responsibility for which they have no competence;
• Perceived distress of their parents, their suffering, sadness, and emotional fluctuations;
• The response from other people and the influence on their socialization, choice of friends and partners;
• In the course of time, the transformation of roles in the family can be stressful (the ageing parents often commit the healthy sibling to take over the care, without actually proceeding to such situation and without involving the sibling in the decision-making);
• Planning of own future.
Runswick et al. emphasize that is hard to have s sibling with a disability because most of healthy siblings feel a responsibility for them, more than a typical sibling [7].
I think that the above stated information is alarming. We the psychologists are aware of the huge risks for the development of the personality of healthy siblings, if their developmental needs fail to be sufficiently met and if work with the family and with the school fails to be implemented with the help of efficient tools.
Sibling Support Project
Since 1990, “the Sibling Support Project” has been implemented in the U.S.A.; it is led by Mr. Don Meyer from Kindering Center in Seattle who is also the founder of the so-called SIBSHOPS. The organization has the mission to improve mutual support of siblings of disabled children and to increase the understanding of the issue of sibling relations among parents and professionals. Trainings for founders of the so-called Sibshops resulted in founding more than 430 such support groups, e.g. in Canada, England, Ireland, Japan, Iceland, Guatemala, Turkey or New Zealand.
What to do about the concerns often experienced by brothers and sisters: peer issues, resentment, loss, and concerns about the future (just to name a few!)
• How to increase the unique opportunities often experienced by siblings, including compassion, advocacy, insight, and tolerance
• Strategies to decrease siblings’ concerns and increase their opportunities
• How to help your agencies provide “sibling-friendly” services
• How to plan and run Sibshops, the award-winning, kid-friendly mix of peer support and recreation
Almost thirty years of work with sibling groups have proved that healthy siblings are willing to help their parents and to put the care for the disabled sibling first [8]. It was very typical that at the beginning of the cycle, the healthy siblings wanted to get as much information as they could about the sibling's handicap, potential compensation, development, communication satisfaction of needs, and only at the very end of the cycle they started dealing with their own life.
I would like to highlight also the benefits of being a sibling of a disabled child, not only the negative experiences and risks.
What can be positive about being a sibling of a disabled child for the development of personality? The following categories were identified: higher maturity, development of understanding, value system, developed tolerance to differences, greater loyalty, and professional sensitivity.
Maturity
The siblings of disabled children usually are much more mature and responsible than their peers.
Several possible explanations:
• They have had a different experience and their peers problems seem almost negligible to them
• Loss of life naivity (particularly the siblings of seriously ill children are aware that bad things simply do happen, that the situation will not improve over the time and that other people do not confront something similar to what they did with their siblings)
• Increased responsibility (the siblings, particularly the sisters, often try to assume an active role in the care for the disabled sibling... if they handle the task well, they may develop a sense of responsibility and self-esteem)
• Outlook for the future (the siblings often get a unique insight in human life. The increased understanding contributes to the development of their mature view of the world; they see the world in different forms; they learn determination, patience and other qualities that help them grow into mature and sensitive adults).
Development of understanding
The healthy sibling is aware that the society looks at the handicap of his/her sibling; therefore he/she tries to describe the sibling rather from the perspective of strengths and abilities than weaknesses. The healthy siblings also report that the life with their siblings has had a significant effect on their values. It has taught them that there are much more important things in the world then intelligence, popularity and good looks, for example compassion, humour, loyalty or unconditional love.
The siblings perceive the effort of the family to confront problems together; they are aware of their parent’s strength to support each other in difficult times. They are aware of the fact that it does not come automatic to be healthy and skilled, and they regard it much higher than their peers do.
Tolerance
Another benefit of growing up with a disabled sibling lies in the development of higher tolerance, understanding of people, compassion and devotion to altruistic goals. They are more tolerant in accepting differences than their peers are.
Loyalty
Similarly to most siblings, brothers and sisters of children with special needs often fight and argue within the family. But outside the family, the siblings of children with special needs may feel an obligation to defend their siblings against cruel comments and looks. But such loyalty may be a problem for some of them. Such incidents may lead to reviewing of their relations with the disabled siblings, to reconsidering the meaning of friendship and social tolerance of differences.
Profession
The siblings of disabled children often choose helping professions. There are different kinds of motivation. Many siblings say that having a sibling with special needs has prepared them for the variety of human existence. The siblings who search for work in this field bring an irreplaceable reflection of reality into such professions.
Conclusion
A functional family should satisfy the needs of all family members, not only those of the disabled children. The parents should be able to split their attention equally among the siblings; there should be an opportunity to take care of each of them separately as well as to spend time together. This harmonization is very difficult, but crucial to the whole family system.
The advisory services should teach the parents to
• openly communicate with the healthy siblings of the disabled children;
• explain the handicap and its consequences adequately to the child's age;
• divide duties and the attention fairly among the children;
• involve the healthy sibling adequately into the activities in the family with regard to his/her age/developmental level;
• respect that each child should have something "purely own" in the family;
• Devote specific time to the healthy child; be receptive to his/her needs, problems, wishes and dreams… No matter how difficult the situation in the family is, the siblings need to feel being loved.
The advisory services should teach the teachers of inclusive schools to:
• see the communication partner in the disabled child's parents and not in his/her siblings;
• not to aggravate the situation of the disabled child's sibling who is assigned with duties and responsibilities disproportionate to his/her age and developmental level;
• involve rather the classmates than the healthy sibling into the work with the disabled child (trips, clubs, school canteen);
• explain the challenging life situation to the classmates of the healthy sibling through preventive programs;
• support and appreciate the healthy sibling not only for his/her help but primarily for his/her own self-developing activities; pay attention to his/her psychological condition and sensitively notify the parents if needed.
I would like to use my article to appeal to the teachers of inclusive schools to better learn to know the families of their pupils and, in case of simultaneous education of healthy and disabled siblings, to provide both of them with sufficient support, to try to involve other people and find ways to cooperate with the family and within the class. The siblings of disabled children have, after all, the same right to quality life and education as the other children and the disabled children. Let's avoid burdening them more than really necessary.
Inclusion and inclusive school is a hot topic for our society. The goal of common tuition and work is to develop prosocial behaviour of children and of their parents, to support the development of a safer, supporting, interesting, helpfully challenging and harmonious school. I would like to believe that the supporting environment will benefit not only the disabled children and their classmates but also their siblings and that we will be able to provide and aim support at the children aptly called "children in the shadow" by Haberthür et al. [8].
Villa et al. define inclusive schooling as "welcoming, valuing, empowering, and supporting the academic, social/emotional, and language and communication learning of all students in shared environments and experiences for the purpose of attaining the goals of education [9]." Also Thomas et al. wrote: "The premise of inclusive teaching works to demonstrate that all people can and do learn. Educators and administrators can incorporate the techniques of inclusive learning and help learners retain more information [10,11]."
The sibling relationship is the longest relationship in human life. Children learn the first equal relations in it, they act as rivals and allies, and they learn compromise, solidarity, negotiation strategies. If the only sibling is a disabled child, the situation is different. Although such type of sib ship supports the development of many positive personality qualities, it also causes many intra mental and extra personal problems that must be dealt with in time.
The support provided to families with disabled children is exclusively focused on the disabled child or his/her parents. Although current trends emphasize the need to work with the family as a system, minor siblings are usually at the margin.
My article paid attention to joint education, which is the situation when the disabled child attends the same school that his/her "healthy" sibling does.
The study was aimed to find out whether the teachers at such schools know that the children in their class have a disabled sibling at the same school, how they treat him/her with respect to the relations with classmates, what responsibilities is the child assigned by the teachers and the parents in connection with the help with the education of the disabled sibling. The research done through a selfstructured questionnaire took place at 32 schools where disabled children and their siblings attend inclusive education. The study result was sad. The detailed analysis of the findings showed that most teachers do not know that the child in their class is the sibling of a disabled child going to the same school. That means that they never spoke with them about that topic, they never expressed understanding of his/her difficult life situation, they did not help in case of conflicts with the classmates, they did not support him/her.
The remaining teachers knew about the siblings as they used their help to communicate with the parents, to pass homework, they used their ability to communicate with the disabled child, and they asked the "healthy" sibling to cooperate in the activities of their class. The approached siblings confirmed to be glad to help but that they admitted having little time for themselves, to act as "assistants" to their brother's/sister's teacher during breaks or even during lessons, that they are commonly released from their own lessons and that it is no exception that their classmates or schoolmates make fun of them because of it.
I would like to use my article to appeal to the teachers of inclusive schools to learn better about the families of their pupils and, in case of simultaneous education of healthy and disabled siblings, to provide both of them with sufficient support, to try to involve other people and find ways to cooperate with the family and within the class. The siblings of disabled children have, after all, the same right to quality life and education as the other children and the disabled children. Let's avoid burdening them more than really necessary.
References
- Giallo R, Gavidia-Payne S (2006) Child, parent and family factors as predictors of adjustment for sibling of children with a disability. J Intellect Disabil Res 50: 937-948.
- Kallwass A (2008) Das Burnout-Syndrom: Wir finden einen Weg. München : mvg-Verl.
- Bendor SJ (1990) Anxiety and isolation in siblings of pediatric cancer patients: The need for prevention. Soc Work Health Care 14: 17-35.
- Burke P (2004) Brothers and sisters of disabled children. London: Jessica Kingsley Publishers.
- Schorr-Ribera H (1992) Caring for siblings during diagnosis and treatment. Candlelighters 16: 1-2.
- Runswick-Cole K, Tillie C, Liddiard K (2017) The palgrave handbook of disabled children’s childhood studies. Palgrave Macmillan UK.
- Turpin M, Leech C, Hackenberg L (2008) Living with parental multiple sclerosis: Children ´s experience and clinical implications. Can J Occup Ther 75: 149-156.
- Villa RA, Thousand JS (2016) Leading an inclusive school: Access and success for all students. Alexandria: ASCD.
- Cornell T (2014) Inclusive teaching: Presence in the classroom. In new directions for teaching and learning, Number 140.
- Ferrari M, Sussman MB (2015) Childhood disability and family systems. Routledge.
- Green S, Barnartt SN (2016) Sociology looking at disability: What did we know and when did we know it? In Health & Social Care.
Citation: Kolarikova M (2018) Sibling of Disabled Child at the Inclusive School. J Community Med Health Educ 8: 609. DOI: 10.4172/2161-0711.1000609
Copyright: © 2018 Kolarikova M. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
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