Diagnosis of mentally retarded child
Mental retardation (MR) is the most common developmental disability and ranks first among chronic conditions causing major activity limitations among persons in the United States. In 1993, an estimated 1.5 million persons aged 6-64 years in the United States had MR, and the overall rate of MR was 7.6 cases per 1000 population(Morbidity and Mortality Weekly Report, Centers for Disease Control and Prevention, USA).
According to the census of 1998, 7.60% of the total disabled population of Pakistan consists of mentally retarded people. Diagnosis of mentally retarded child in the family comes with great deal of challenges on the part of parents as well as siblings.
According to Cicirelli, Geottings & Seltzer, sibling relationships occupy a unique position within the study of human relationships, and are of potentially longer duration than any other human relationship. Sibling relationships, especially in comparison to parent-child relationships, are highly egalitarian and the sibling role remains part of the individual's identity regardless of changes in life events. These unique attributes contribute to the emotional and reciprocal influences that have been described among siblings at all stages in life (cited in Rimmerman & Raif, 2001). Sibling relationships are long-term and influential and can have a deep impact on children's development (Dia, Harrington, 2006).Most people grow up in a family with at least one brother or sister. The relationship between siblings can be manifested by rivalry and conflict, but can also be one of the closest and intimate relationships a person has in childhood, adolescence, and adulthood. Unlike parent-child relationships and children’s peer relationships, there is far less empirical research dedicated to the study of sibling relationships, which is very surprising (Volling &Blandon, 2003) because sibling bond is only one of its kind among family relationships (Pruchno, Patrick, & Burant, 1996; Seltzer, 1989). These relationships are endorsed and not subject to individual choice. With the exception of adoption, siblings share the common genetic, cultural, and environmental characteristics and even after the death of one of the siblings, this relationship can be longer than any other type of relationship (Degeneffe & Burcham,2008).
The sibling bond fulfills many functions and provides reciprocated benefit but family dynamics become disturbed when one child in the family has developmental disability (Abendroth, 2009), because most children are raised with brothers and sisters and spend more of their time with their siblings than they do with their parents. Thus, when a child has a developmental disability or chronic illness, siblings' lives are affected (Lobato, Kao& Plante, 2006).
An estimated 7 million typically developing American children are siblings of children with a disability. Having a child with a disability affects everyone in a family. Having a child whose needs loom larger than those of other people in the family, and who has to be the priority, affects everyone (Levy, 2007). The birth of a child with a disability or chronic illness, or the discovery that a child has a disability, has a profound effect on parents and siblings as well. Children suddenly must adjust to a brother or sister who, because of their condition, may require a large portion of family time, attention, money, and psychological support. Yet it is an important concern to any family that the nondisabled sibling adjusts to the sibling with a disability. It is important because the nondisabled child's reactions to a sibling with a disability can affect the overall adjustment and development of self-esteem in both children (National Information Center for Children and Youth with Disabilities, 1994).
There have been many reports of positive and negative outcomes to being raised with a disabled child. Siblings of disabled children develop greater understanding for disabled persons. They become more patient, tolerant, mature and responsible as well as develop pride on their brother or sister’s accomplishment. But at the same time siblings may feel a myriad of feelings including resentment, jealousy, guilt, grief, fear, shame, embarrassment, and rejection. None of these feelings are bad but they may arise from a misunderstanding of the situation and a misinterpretation of parental behavior. The resentment and jealousy stems from the extra attention that parent and others give to disabled children (Alper,Schloss & Schloss, 1994). As in the pilot study by Peter Burke & Sue Montgomery, (2000), they noted that siblings of disabled children receive less attention from their parents due to extra care the disabled children require. Siblings may dislike the special concession given to the children with disabilities in terms of rules and regulations. It may become difficult for siblings of disabled children to accept that their programs and activities are scheduled according to needs of disabled children. Most of all siblings of disabled children are expected to help their disabled brother or sister and that demand may become burdensome when they do not even know that how to communicate with their brother or sister. As a result of being treated this way they may feel rejected and develop a low self esteem. They become even more tensed when their friends ask questions about their disabled brother or sister and they cannot answer accurately. They may also become fearful of developing the condition, catch it, or pass it on to their own children some day. As this sister of a child who has mental retardation said:
When I was young I used to get pretty good grades, but I went through a very painful period wondering when my grades would change and I would "grow retarded" like my sister. I never talked with anyone about those fears. Initially, I was afraid to talk about this because I dreaded the answer. Later, when I understood what retardation was, I felt guilty that I had such thought (Alper,Schloss & Schloss, 1994).
Siblings may feel ‘left out’ when parents do not share information regarding their brother or sister’s condition with them because they have very little opportunity to know about disability of their brother or sister. Donald Meyer, the director of the Sibling Support Project in Seattle, Washington, says: "Brothers and sisters have an ever-changing need for information about their sibling’s disability” (Morin, 2007). Siblings of disabled children often get confused due to their parents’ reluctance to talk about their disabled children to their siblings. As Opperman and Alant (2003), reported that there is limited family interaction when there is a disabled child in the family and siblings of disabled children were given limited information and guidance about their disabled siblings. They want to know about their siblings’ disability and are not sure that whether or not they should talk about their sibling’s disability to their friends and other people. They don’t understand that how to express their feelings about their disabled siblings. Their feelings may range from confusion to anger, fear, sadness and embarrassment. Sometimes their shame is so prominent that they wish they did not even know their brother or sister who acts so differently (Mazur, 2001). According to sister of 13 years old mentally retarded boy, she feels terrible about her reactions to his outbursts and expressed her feelings as:
''I know it's not his fault and that's the way he is, and so I shouldn't really be embarrassed, but sometimes I am’’ (cited in Cook, 2003).
The normal children are called ''shadow siblings'' because the disabled child occupies the center of the family. Growing up at the margin does not help identity formation either (Meyer, 1994).According to santrock, 1993, a child’s disability may have a significant effect on the functioning of the family and the home environment and may affect the psychosocial development of the nondisabled siblings. The effect of the child’s disability may be particularly significant from childhood to adolescence when children experience major biological and physical changes. Siblings may feel lonelier, have fewer friends and experience more peer problems compared to other children of their age without disabled siblings.Siblings of disabled children are more concerned about the future of their brother or sister (as cited in Kouvava, Stampoltzis, Antonopoulou, Tsitas, Maka, Kalambouka & Zenakou). As Ishizaki et al. (2005) reported that psychosocial problems are more prevalent in siblings of children with disabilities than siblings of children without disabilities. Bagenholm and Gillberg (1991), reported that siblings of children with mental retardation were lonelier than their age mates of typically developing children and had more problems interacting with their peers (cited in Rossiter and Sharpe, 2001).
Siblings often have two views about the cause of their brother or sister’s disability. One view is developed by the information given to them by their parents and the other view is developed on their private thoughts. These private thoughts may include the same feelings as researchers reported like guilt and fear. A disabled child in the family requires a great deal of time and energy. To fulfill this requirement non disabled siblings are often responsible for the care taking purpose of the disabled children. If non disabled child receive limited attention from their parents then pressure to be involved in caretaking tasks may lead to psychological disturbances. Non disabled siblings may be burdened by high aspirations to compensate their parental disappointments on the part of their disabled children. Non disabled siblings often get frustrated if they could not meet the expectations of their parents. Siblings of disabled children may feel anger more intensely and more often than siblings of non disabled children. Their level of anger and resentment may depend on the financial resources of the family, the number and gender of the siblings and the extent to which disabled child requires excessive time and attention of their parents. Having a disabled child in the family inhibits the communication in the family and thus non disabled children may feel loneliness (Mazur, 2001). Bagenholm and Gillberg (1991), found that siblings of mentally retarded children complained to be given more work and caretaking activities at home (cited in Rossiter and Sharpe, 2001). As Mortimer, 2008 reported that siblings of children with special needs can feel embarrassed, resentful, guilt jealous, sad, and feeling different from their peers. They may not want to invite friends home or be seen in public places with the sibling. Brothers and sisters may have feelings that are hard to express, even to close friends. They may feel sad about their sibling's disability or angry when their sibling doesn't act like a typical sibling in public. They may feel an overwhelming responsibility to do well in school and at home so that their parents don't have to worry about them when they have so many other worries (Chattanooga Times, November, 2009).
Greenberg, Seltzer, Orsmond, and Krauss, 1999, reported that almost 60 percent of the siblings of persons with mental retardation expected to assume primary care giving responsibility in the future and as compared to brothers, sisters of mentally retarded children are more often expected future care giving role and responsibility. Although both brothers and sisters help their parents for care of their disabled sibling but studies show that older sisters especially have increased care giving demands. Researchers suggest that these sisters have less time for them and have more conflict with the child who has disability (Arch National Resource Center, 1993).
Increasingly, the opportunities many siblings experience by growing up with a brother or sister with special needs are also being acknowledged. These include insight on the human condition; maturity from successfully coping with a siblings' special needs; pride in their siblings' abilities; loyalty toward their siblings and families; and appreciation for their own good health and families. Brothers and sisters of children with special health and developmental needs routinely face problems that are not experienced by other children. Defending a brother or sister from name-calling, responding to questions from friends and strangers, and coping with a lack of attention or exceedingly high expectations from parents are only a few of the problems siblings may experience(Arch National Resource Center,1993). Siblings of mentally retarded children deal with the same problems.
Retardation in a child surely has an effect on all family members. Studies indicated less intense sibling relationships when there is mentally retarded child in the family also expressing realistic concerns about the future (Eisenberg, Baker & Blacher, 1998). Siblings of children with mental retardation may be at greater risk for adjustment problems because of family stress related to the needs of the child with mental retardation (Lynch, 1993). Researches show symptoms of anxiety and depression in the siblings of mentally retarded children (Lobato, Kao& Plante, 2006).
Other concerns siblings may have include over identification ,fearing that they also have the siblings' condition; a perceived pressure to achieve in academics, or sports; feelings of guilt about having caused the illness or disability or of being spared the condition; feelings of resentment when the child with special needs becomes the focus of the family's attention or is permitted to engage in behavior unacceptable for other family members; and concerns about their and their sibling's future (Arch National Resource Center,1993).
Rossiter and Sharpe, (2001), found negative effect for having a sibling with mental retardation on the functioning of typically developing children. They also suggested that negative effect would depend on many factors as parents, other siblings, level of functioning of the mentally retarded children, the extended family, peer group, socioeconomic status, the community and so on.
Williams et al., (2010) concluded after identifying responses of the parent’s perception of the effect on well siblings of children with disabilities, 61.1% reflected negative manifestations of increased risk in well siblings; 1.7% indicated no risk; and 37.2% reflected positive outcomes.
Rossiter and Sharpe, (2001), reported significant differences between the siblings of children with mental retardation in terms of their age as they found more positive functioning of adult siblings of mentally retarded children. Stoneman (1998), (cited in Rossiter and Sharpe,2001) reported that positive impact of having a sibling with mental retardation should also be considered and must recognize the possibility that some positive consequences may not appear until adolescence or adulthood.
According to Turnbull & Turnbull (1990), siblings of mentally retarded children need a continuous support to bear the challenges of their lives so that they can be better adjusted. Siblings need positive role models in the form of their parents, who can make them feel esteemed and cared for. They need to feel that they have their own position in the family and are not an afterthought. They must know that they are not responsible for the disability of their brother or sister and should not be pressurized to care for them or to be involved if they wish. Siblings definitely need support groups to provide an opportunity to learn new information and to share their experiences with one another. Parent organization, clinics, and therapists often organize groups of siblings to discuss their feelings and deal with mutual issues. Siblings can work out their negative feelings in a supportive environment and without the fear of offending parents and the brother and sister who has a disability (Alper, Schloss and Schloss, 1994).
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