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Psychosocial Difficulties of Parents with Young Children with Severe Disabilities

Author: Dr Bindu Chawla, Associate Professor of Education , Touro College, Graduate School of Education, New York.

Introduction:

Being a parent has never been easy. Parenting is the job with no preparations and vacations. Senel and Akkok (1996) reported that children with disabilities have special needs that require more attention, greater vigilance and effort from parents than non-disabled children. Chronic illness in childhood has massive physical, social and psychological effects on families who are expected to raise the social adaptive child with special needs. Psychosocial (how parents and children mentally adapt to social situations) issues of parents and children with disabilities can be very traumatic for most parents. Psychosocial aspects, influences, parents and family factors all contribute to a healthy child with special needs.

When a child is born, family life changes forever. If that child has special needs, the changes can be overwhelming. (Naseef, R.A., 2001). Raising a child with special needs to achieve his full potential is hard work. Actually, there isn’t an easy way to raise the child with a disability. The parents of the child with disability need to be stronger, adaptive, and optimistic, and have a huge sense of humor. They have to be “special” for the special child. Children with disabilities are often unfairly viewed by society as being unruly children, the result of nothing more than bad parenting or lack of discipline.

Many studies draw on Lazarus and Folkman’s (1984) model of stress and coping in family (Knudson & Coyle, 2002; Sloper, 2002; Taanila, Syrjaelae, Kokkonen, & Jaervelin, 2002). The parents with children with special needs show a variety of psychosocial problems including depression, anxiety and angry behavior. Every parent with a special child has to become more educated and empowered; has to learn how to love unconditionally and redefine perfection and disability; understand fully the sacred and tremendous responsibility of being a child’s parent. Only the happy and healthy parents can teach the child to live in society fully. The children are learning general activities, behaviors and specific skills from the parents. Parents of children with special needs must view their children as children first, not as disabilities. First of all, the parents have to understand feelings such as denial, anxiety, fear, guilt, shame, depression, anger and hope, and have to deal with all of those feelings.

Psycho-social difficulties of parents:

Throughout the child’s life, the parents may have to grieve the loss of some big and some small parenting dreams as they incorporate new dreams and expectations. The parents of children with special needs can see that the grief is often part of the lifelong, shorting out process. After words, the parents can learn to recognize and anticipate such grief stages as they approach, allowing them to better address them and then move forward into the uncertain territory that lies ahead. The sense of loss that comes with special needs parenting is very real. Farber (1975) indicated several adaptations that families develop when having a child with a disability. Murray (1980) indicated similar adaptations as well. The families of children with disabilities are faced with a variety of feelings, reactions, and responses which could to change their life. They have to shoulder the heavy responsibility of leading this child into life, and love him as though he embodied all their dreams.

Turnbull and Turnbull’s (2001) framework for understanding the emotions, dynamics, and elements of family systems has allowed professionals to work more effectively with those families. The four elements of this framework are: family resources; daily interactions among family members; different individual family needs; changes that occur over time which affect family members (Turnbull&Turnbull, 2001).

The parents are going through the many stages of understanding and accepting their child’s disability. First of all, there are the expectations. The parent’s world has been severely shaken. Finding out that the child has special needs is an emotional earthquake. Everything seems broken, turned upside down. The parents stop trusting even the most mundane things. Families caring for and bringing up a child with a disability can include strained family relationships, social isolation due to the child’s limited mobility or behavior problems, and parents grieving process through which parents grieve for the loss of the healthy child they had expected (McCubbin, Caublc, & Pattcrson, 1982). The grieving is uncomfortable, but it serves an important purpose. The anguish and stress are often tremendous, and each family member learns to cope with a mechanism that is frequently quite efficient in carrying other family members through the substantial turmoil. The family often draws closer as they depend on one another.The several positive outcomes of having the child with a disability are that the parents focus on the positive aspects of the child and the improved family dynamics. (Olsen, G., Fuller, M.L., 2007, pp. 160-161).

Back in 1969, Elisabeth Kubler-Ross identified five stages of grieving. (Lavin J.L. Special kids need special parents, 2001). Since than, others have refined her model. Grieving just happens. It’s a temporary state that comes and goes by itself. The parents who stop themselves from grieving have more difficulty coping and helping their child and their families. The first stage is usually denial. Parents try to refuse to fully accept what’s happening. The denial buys the time to assess a new situation in small pieces. Staying in denial can be a way of avoiding responsibility, and the consequences can be devastating. Anxiety is another grief state. The anxiety and the pain it often elicits warns the parents that they are going to experience change. Next is guilt. Most parents blame themselves. It begins with the question “Why me?” Guilt can be paralyzing, but it can motivate parents to find a new understanding of the situation. The anger stage can run the gamut from fighting and yelling to not responding at all. Anger is a form of hurt and sometimes it can help the parents create change or motivate them to seek justice. Depression occurs when the parents experience profound sadness. Depression is anger turned inward. It signals the beginning of acknowledgment of the situation. Acknowledgment occurs when the parents are finally aware of how they feel about their loss. It means that the parents respect the circumstances as reality. It’s during this time that people move forward. They form new ideas and take greater responsibility for what needs to be done despite their pain.

Coping strategies:

Parents of children with developmental disorders encounter a variety of severe hardships in caring for themselves and their children’s needs and coping with the challenge. Research by Dr. Tali Heiman (2004), of the Department of Education and Psychology, sheds light on the nature of their personal hardship and explores the coping mechanisms parents call upon to deal with their children’s everyday functioning. The majority of parents, despite their initial perception of a personal tragedy, expressed a strong belief in the child and in his or her future, an optimistic outlook and realistic view and acceptance of the disability. There are three sources of support and central factors which affect the parents’ ability to cope and to reduce feeling of hardship and stress and contribute to strengthening parental functioning. There is a positive bond between parents; cooperation, discussion and consultation of parents with family; and using the available services for diagnostic treatment counseling and training for the child and the family. It is very important to use effective intervention programs for parents. The parents have to be in a good support group from special organizations and from other parents who have the similar situations to cope with problems. Families have also learned to effectively implement strategies and techniques that best fit their families’ goals and objectives. (Olsen, G., Fuller, M.L., 2007, p. 167).

Psychosocial impact of disabilities put increased stress on the child and the child’s parents and siblings. The parents with children with disabilities are going through many stages. The parents may be going through the marital conflicts, emotional imbalance and self-recrimination. Many parents have reacted to the disability with adaptive fear for their own children’s futures. Children with any disabled condition have twice the risk of developing mental health disorders compared to healthy children, and three times the risk if they have an accompanying disability. For all children with disabilities, limitations to schooling, mobility and communication constitute the most significant restrictions of daily activities. Parents have to remember that they shouldn’t be afraid of the child or the disability of the child. Effective parents then are likely to be aware of the feeling of pity (Barton, 1996). They view their role as helping the child to become a worthwhile member of the community and expect a child to learn appropriate social rules of behavior. These parents need support in achieving more positive ways of thinking about the child, the parenting rules and the belief in the disability not being a tragedy.

The family improvement occurs whether or not the standard intervention was enhanced with additional parent support and coping skills programs. As well as the general effect on oppositional behavior, Bor, Sanders, and Markie-Dadds (2003) proposed that improving consistent parenting skills can help children to control their impulsivity through learning to inhibit immediate responses. The child must feel secure to explore the world. Parents have to teach the child to “fit” in the social world. The social rules include being friendly, looking people in the eyes when you talk or listen to them, or verbally responding so others know you’re listening. These actions are translated into having good social skills. This is work for the parents. The parents could do all of that only after they cope with the problems in their families’ lives.

The two types of coping for parents are differentiated by intention. First, there is helping individuals to deal with their problems through cognitive or motivational changes, such as learning the new skills. Second, emotion-focused coping is directed at modifying one’s own emotional response to a problem and includes such strategies as seeking emotional support, wresting value from negative situations, distractions, and minimization (Lazarus & Folkman, 1984). Special needs parenting needs superhuman patience, energy, communication skills, sense of humor, a positive attitude in a different situations, and huge commitment to seeing a child’s potential as well.

The parental coping divides into three patterns: maintaining family integration, cooperation, and optimistic definition of the situation; maintaining social support, self-esteem, and psychological stability; understanding the medical situation through communication with other parents and the medical staff. Parents of children with disabilities often need additional support.

The study of coping with family has drawn heavily from cognitive psychology (e.g., Lazarus, 1976; Lazarus & Folkman, 1984) as well as sociology (e.g., Pearlin & Schooler, 1978). Cognitive coping strategies refer to the way in which individual members alter their subjective perceptions of the situation. Sociological theories of coping emphasize a wide variety of actions directed at changing the situation by manipulating the social environment (McCubin et al., 1980). The family coping responses are variables and are used in many combinations depending upon individual growth and development.

Coping Strategies:

Foundation Coping Strategies. 1. Explanatory work is the seeking information and advice about disability. 2. Finding out about the child. Parents tried to learn as much as possible. 3. Evaluating past strategies. Parents looked back at the strategies they had used in the past and evaluated the impact of their actions. 4. Comparing and integrating information. Parents compared the information with their knowledge of their child.

Thinking Work Strategy. Parents consciously attempted to regulate their ways of thinking with regard to their child disability to maintain helpful feelings and attitudes. 1. Separating disability from a child. 2. Thinking positively. Parents made an effort to think positively about their own coping abilities. 3. Maintaining a helpful focus. This meant concentrating on “one day at a time”. 4. Keeping expectations realistic.

Capacity Work Strategy. 1. Managing other activities. 2. Skill learning. 3. Working together. 4. Using social support.

All those strategies are working in the right combinations and on the basis of individuality of every family with a child with disabilities. Coping style adds to prediction of adjustment (marital happiness, family adaptability, family cohesion and self-esteem). Families have also learned to effectively implement strategies and techniques that best fit their families’ goals and objectives. (Olsen, G., Fuller, M. L., 2007, p.167). All the work is not about fixing children with disabilities; it is all about changing the situation for those children and for society. A social learning model focuses on the family as a system with patterns of family interactions being viewed as maladaptive or adaptive (Grusec, 1992).

Suggested recommendations or Conclusion:

The child is seen as learning appropriate behavior within a social environment. Behavior is learned through observation, modeling, shaping and reinforcement. The children are learning all of that from the parents. It is suggested that the child’s observations lead to the formation of concepts about possible behaviors which then guide future actions. As the child acts and responds to these concepts behavior will be modified or strengthened (Patterson, 1982). These are used to assess and enhance the parents’ and children’s emotional, cognitive and social functioning. The parents are encouraged to reinforce their child’s appropriate behaviour through praise and attention.

Many difficulties compound the development of behavioral problems through several reinforcing systems, for example, by challenging parenting skills from a young age, and developing additional scholastic and peer relationship difficulties, which may contribute to their sense of isolation and poor self-esteem. The parenting intervention is providing the concept of adequate parenting: 1. Parenting behaviors are related to child behaviors; 2. Inadequate parenting is identifiable; 3. Parenting behaviors can be changed with an associated improvement in child behaviors and adjustment; 4. Behavior is best understood and changed within a behaviorist model. The psychosocial growth interweaves with stages in physical growth. As the brain and body matures, the child develops new abilities on how to handle different problems. The same growth, however, also introduces new problems. The children with special needs may have trouble with some or all stages of psychosocial development. Depending on the disability, a child with special needs usually has uneven emotional development. Teaching a child to act appropriately is a primary part of parenting.

Problems that parents of children with disabilities have every day very different: child development, behavior, nutrition and feeding, medications, therapies, education and early intervention, legal rights and benefits, and counseling. Their children and children’s health, social life and future depend from how the parents deal with those problems and how they are coping with them in the family and in their life. The parents with children with disabilities have to remember that child’s life shouldn’t be considered less valuable because they have special needs.

Many early intervention programs have recognized the role of parents in their children’s development, but firstly parents have to focus on coping problems. Parents can not focus too closely on the child problems without taking account of parental and family problems.

The study of the impact of infants and young children with spatial needs on the family is an opportunity to consider how children provide a stimulus for adult development. This process is the reciprocal of Vygotsky’s (1978) concept of the zone of proximal development. Vygotsky emphasized the natural process through which children learn and develop by interacting with more skilled parents. For adults who are enacting the parent role with energy and commitment, interacting with infants and young children brings new opportunities for problem solving and self-insight. The affection that children express toward their parents can be a tremendous incentive for parents to want to optimize the relationship and promote the child’s well-being.

The Laura E. Berk, in the Awaking children’s minds, shows us the sociocultural theory of Lev Vygotsky. The Vygotsky’s theory provides a convincing rationale for parents and teachers to form strong, supportive, trustful relationships with disabled children; to work with them in creative collaboration; to be generous with time and involvement; and to be open to new ways of surmounting difficulties. Under these conditions, rearing and teaching children with disabilities is challenging, but it is also satisfying and rewarding.

Parents of children with disabilities always try to learn more new things to apply them for their own coping parental strategy. The social ideas have many capacities. The parents and children engage in such seemingly mundane pursuits as conversation, a pretend-play episode, a bedtime story, a homework assignment, or a shopping excursion. Through these activities, children acquire wide-ranging knowledge about their physical and social worlds, ways of relating to other people, strategies for surmounting challenges, a sense of family and community belonging, and a personal history imbued with cultural beliefs and values. They also become adept at using powerful symbolic tools for communicating and thinking. (Berk, L.E., 2001, p. 246).

Families of children with disabilities, like families of all other children, want to have meaningful, enjoyable, and successful lives. All family members are providing moral support, comfort, and the needs of the child with disability (Olsen, G., Fuller, M. L., 2007, p.159). Parents protect children; try to make their social life more independent. The success of intervention depends upon their own views about disability, social views, family and society behaviors and their own feelings. The positive moment for children occurs when parents are able to help their children to live a better life as socialized people.

We know now that is doesn’t take a special person to teach children with disabilities. It simply takes a special person to be a good teacher. (Statum, 1995, p. 66). Can we use the same words for the parents also?

The parents can help themselves and their children realize their potential by making a long-term commitment to sensitivity, consistency, and richness of interaction, not by offering brief bursts of attention interspersed with little involvement. This means that good parenting is possible only through great investments of time.

Authors biography: The author is Dr Bindu Chawla , Associate Professor of Education at Touro College, Graduate School of Education where she teaches a class on Patterns of Parenting and Early Intervention. Prof. Chawla completed her doctoral work at Teachers College Columbia University in the year 2001.Prior to that she completed a Masters of Arts and Masters of Education from the same college.

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