There are many studies that have been done to investigate the impact of disabled children on their families and communities and the best care provision methods. This paper will investigate how family members should deal with a disabled child. It will investigate how marriages are affected by disabled children. The findings of various studies will be highlighted and discussed. Attention will also be given to the impact of short breaks in care giving.
Disability is a developmental disability; a physical or mental disability that limits life activities such as seeing, speaking, breathing, walking or learning. When a child is first diagnosed with a disability, his or her family takes on a period of depression, a kind of “grieving process” (Gill, 2008). Family members become depressed, isolated and angry. The disability is usually likened to “death” (Estrada & Pinsof, 2007). The situation is worsened by stigma and the continued presence of the “bereaved.” Though the family gets used to the presence of the disabled child and starts behaving normally, siblings “experience a secondary form of disability” in the process of adjusting to accommodate the disabled child” (Estrada & Pinsof, 2007). They are haunted by dread of catching the disability. Social events and family gatherings become occasions that cause suppressed shame and great anxiety.
When a couple realizes that their child is disabled, they become depressed. The depression may affect their relationship negatively. When the first child’s disability is perceived to be genetic, partners may be skeptical of each other, secretly blaming each other for the disability. Professionals should be careful when revealing information about heredity matters so that a marriage does not end on insufficient grounds (Gill, 2008). If the likelihood of having a second disabled child is high, parents may be advised to avoid having more children (Estrada & Pinsof, 2007). This may cause dissatisfaction for parents who desire more than one child. If one parent cannot deal with the tension, they may choose to end the relationship. Either way, the dissatisfied parent may become resentful and angry, causing the relationship to be turbulent (Read, Blackburn, & Spencer, 2012).
Researchers have found out that tension exists when one parent is perceived to be playing a detached role in caring for the child. Either the child’s father or mother may appear to be giving more effort; the father may busy working in order to take care of the increased financial responsibilities. He is expected to allocate some time for the disabled kid, whether or not the child resides in a care center. If the child is not residing in a care center, the mother is expected to take care of many of the child’s needs such as dressing, instructing and socializing. Failure to organize duties and be committed to them may cause dissent in a couple. In addition, stress levels may prevent a couple from having a normal sexual relationship. This may cause further tension and may be the beginning of a marital conflict (Read, Blackburn, & Spencer, 2012).
Disabled children are very sensitive and conscious about how people treat or interact with them. They are likely to translate compassionate care into feelings of self-pity. They can easily pity themselves or become cynical of people around them. Often, they try to do their best in the mental and physical activities to prove that they are normal and competitive. Excelling in these activities boosts their self-confidence. Caregivers, including family members, are encouraged to assist disabled children with motivational support.
Impact of short breaks in care giving
Many studies have focused on the impact of short breaks on a caregiver’s stress level and other measures of his or her well-being. Researchers have found out that short breaks have a valuable impact of the well-being of caregivers including family members. Family members reported benefits such as rest, reduced stress and a sense of relief. They also reported that the short breaks enabled them to enjoy time alone; engage in social and relaxation activities such as swimming, reading and walking. Short breaks brought about a sense of renewal. They helped family members have the necessary social support from other members of the society and attend needs of other children. When a child was hospitalized for serious conditions, short breaks enabled family members prepare for death, through discussions with staff and accessing materials available at the hospital (Robertson, et al., 2010).
The studies also revealed that parents who did not have short breaks, while providing care for their disabled child, experienced high levels of stress and were isolated from societal members. They neglected some obligations at home. They tended to be angry, easily distracted and resentful. They were worried about the welfare of the disabled child and the demanding responsibility. Taking children with urgent special needs to care centers reduces stress levels to a certain degree although parents reported being anxious about a child’s wellbeing (Robertson, et al., 2010).
Short breaks have positive effects on disabled children too. They allow them to interact with non-disabled children, gain social skills, learn to be independent and separated from parents, be exposed to new stimuli, develop interests, increase social awareness and develop friendships. Hospital-based short breaks give children the chance to interact with staff and talk about their health. They also meet other disabled children and are able to feel less different. Other studies have found out that short breaks cause homesickness and place children in unsuitable accommodation and interaction places. The research was carried out to determine ways in which caregivers can balance the negative and positive effects of short breaks.
Another objective of the research was also to find out why when disabled children grow up, they tend to make fewer demands from their parents or siblings. It is theorized that making fewer demands will make a disabled child appear less bothersome. Current research is also aimed at investigating how parents and siblings respond to this scenario. Some researchers postulate that parents and siblings will give disabled children the desired space (Robertson, et al., 2010). This may have serious implications. For example, desired space might be a result of an urge to start doing things for themselves. When caregivers have deserted a disabled child, he or she may not have the necessary support to learn the things they want to learn. Various studies have already found out that isolation may cause victims to engage in self-destructive acts or have suicidal feelings. If a disabled child attempts a suicide, for reasons caused by family members or otherwise, the family may be stigmatized. Family members may feel guilty or blame each other.
Many studies have found out that short breaks increase optimism about caring for disabled children at home and elevate family functioning. Other studies have reported inconsistent findings. This could be as a result of methodological problems or neglect of other variables such as the challenges family members face while giving care to the disabled child (Robertson, et al., 2010).
The impact of disabled children on their normal siblings
Various studies have been done to investigate the impact of disabled children on their normal siblings. Normal siblings are affected both negatively and positively. It has been found out that negative impacts are revealed in their externalized behavior. Normal siblings tend to have good relationships with others because they have, in the first place, had good relationships with disabled siblings. For example, they tend to be more sensitive, tolerant, caring and accepting (Estrada & Pinsof, 2007).
There are about seven million disabled siblings in the United States. The needs of normal siblings are frequently overlooked; focus has always been directed towards the establishment and maintenance of support systems that help disabled children and their caregivers. Siblings are a source of support and companionship; they provide a sense of security. However, they are a source of conflict. They are likely to engage in sibling rivalry. Through behavior and language, feelings of jealousy, resentment and hostility can be revealed. Negative impacts are evident in internalized emotions such as resentment, anger and guilt.
Sibling rivalry intensifies when parents are favoring some children. Serious sibling rivalry is experienced in families with a disabled child since disabled children tend to be accorded much time and care. Research studies have found out that feelings of favoritism are apparent, whether or not parents try to appear neutral (Estrada & Pinsof, 2007).
Normal siblings may become cheerful caretakers because they consider themselves lucky. They are internally compelled to compensate for the disappointments caused to their parents. They pretend not to have any problems and make no demands. They experience an unconscious pressure, both internally and externally, to act as if that nothing is wrong. They see their success as tainted by the “failure” of the disabled sibling (Estrada & Pinsof, 2007). Their present and future lives are complicated by a sense of untoward responsibility. They try their best to be different from the disabled child or leave the shadow of “dysfunction.” It is important for the whole family to undergo a therapy session to help them come to terms with the new “blessing” and socialize normally (Bennett, Deluca, & Allen, 1995).
When a child is first diagnosed with a disability, family members become depressed, isolated and angry. They are advised to seek professional care to enable them socialize normally and take care of the disabled child.
Short breaks during caregiving have benefits such as rest, reduced stress and a sense of relief. Caregivers are able to engage in relaxation and social activities. Short breaks enable disabled children gain social skills, learn to be independent and separated from parents, be exposed to new stimuli, have interests, increase social awareness and develop friendships. Serious sibling rivalry is experienced in families with a disabled child since disabled children need much more time and care. Further research should be on the impact of short breaks on siblings and fathers.