Resources for Coping Responses of Parents (page 3)
The ability of parents to respond to the stress of having a child with a disabling condition is based on two categories of resources available to them: internal resources and external resources.
Kirk and Gallagher (1989) find that some families are successful in coping with having children with disabilities, while some are not. Families that are successful "call on internal and external means of support for the strength to deal with the special needs of their children" (p. 22).
There are five internal resources that are closely related to parents' coping responses. These five resources are described in the paragraphs that follow.
The Degree of Perceived Control or Lack of Control of the Situation
Using its own internal resources, a family can find it somewhat easier to adjust to life with a child with disabilities (Gallagher, 1986). Examples of internal resources are:
- A mother who is satisfied with her marriage
- A father who is supportive
- Financial security
- A commitment to a set of values (for example, strong religious beliefs)
- The support of relatives, friends, and parents of other children with handicaps (Kirk & Gallagher, 1989, pp. 22-23)
Families may perceive the situation of having a child with disabilities in different ways. As a result, some may withdraw, while others may see it as a challenge. Turnbull and Turnbull (1990) give specific examples:
If we interpret an event negatively, we think of it as threatening our well-being or creating needs-in other words, it is stressful to us. If on the other hand, we interpret an event positively, we think of it as enhancing our well-being or satisfying our needs-in other words, we cope ... When we use an internal coping strategy, we revise our interpretations about an event that was originally perceived negatively, so that all or part of it can be perceived positively or at least neutrally. (p. 362)
Interactions in extended families with grandparents and other relatives such as uncles and aunts may be complex (Gabel & Kotsch, 1981). However, these extended family members may provide support and help (Caplan, 1976; Vadasy & Fewell, 1986). Professionals have started to realize the potential of grandparents as a significant source of support (Fewell, 1986a). Sonnek (1986) suggests that programs for extended family members, such as: (a) the family, infant, and toddler project; (b) the family intervention project; and (c) the grandparents' workshop, should focus on supporting the entire family and utilizing the existing helping relationships and patterns in the extended family on a day-to-day basis for effective family functioning.
Parental Relationships, Health, Energy, Morale, and Spiritual Perspective
Friedrich (1979) reports that degree of maternal satisfaction with the marriage is the single most significant factor in the mother's ability to cope with her child with a disability. This theme is supported by Fewell, Belmonte, and Ahlersmeyer (1983) who report that mothers rate spouses out of a possible nineteen other persons as the most significant support person when it comes to coping with the birth of a child with disabilities.
Generally speaking, parents who are in better health have more physical and/or emotional strength to cope with the situation of having a child with a disability. Parents with increased energy and morale may be more able to meet the needs of the child and maintain successful family life. On the contrary, parents may have more difficulty coping with stressful situations when they do not feel well (Turnbull & Turnbull, 1990).
Turnbull and Turnbull (1990) also include parents' religious views as one major component of internal resources. They stress that some parents may cope well with spiritual support, while others may not. Caplan and Killilea (1976) stated:
Many of us had been struck by the importance of religious metaphors in certain mutual help groups. We thought the more we knew about religion and religious concepts and how they operate in people's lives, the better we might understand about the nature of such things as conversion process (p.95).
Religious viewpoints and emphasis on human physical and mental abilities may influence parental acceptance of a disabling condition and their coping responses (Wolfensberger, 1967). In addition, certain religious doctrines and practices may increase or decrease some parents' feelings of guilt and, again, influence their coping responses (Zuk, 1959).
Problem Solving Skills
Hornby (989) suggests that professionals not only try to understand parents' needs, but also make efforts to get to know and utilize parents' strengths in order to increase their competency and participation in problem solving situations. These situations may include needing non-biased diagnosis and assessment, participating in individualized educational planning, deciding placement in specific programs, finding effective instructional or interventional strategies, dealing with challenging behaviors, and/or enhancing smooth and successful transition from school to community.
As discussed later in this text, effective communication skills, including active listening, paraphrasing, behavioral describing, perception check. and conflict management are helpful problem solving skills (Scharf, 1990) These communication skills can be successfully developed among parents through collaboration or workshop efforts.
Problem solving by parents may be enhanced by employing the following steps (Turnbull & Turnbull, 1990);
- Defining the problem, describing its related issues, and dividing the problem into resolvable and unresolvable parts
- Brainstorming alternatives by listing all possible "free-spirited" and "nonjudgmental" options for solutions
- Evaluating alternatives by the criteria set with all family members' agreement
- Selecting and implementing an appropriate alternative by family members being assigned specific responsibilities
Available Financial and Related Resources
Having a child is expensive. Having a child with a disability is even more costly, due to increased need for health and medical care, therapy, day and nursery care, transportation, adaptive equipment for mobility, and other accommodations. Parents tend to be overwhelmed by the additional financial needs. One parent often has to stay home. Such extra costs may lead to financial insecurity in the family (Singer, Irvin, Irvine, Hawkins, & Cooley, 1989) Unfortunately, our society has not developed a financial support system "to support families as primary caregivers ... [and assist families] to carry out their responsibilities" (Fewell, 1986a, p.26).
A number of external resources can be helpful. These resources include friends, neighbors, professionals, and community agencies/organizations. Turnbull et al. (988) include relatives, friends, neighbors, members in religious or community organizations, co-workers, and professionals in the "extrafamilial subsystem" of family interactions network. People in this subsystem provide various assistance, such as offering child care, helping perform household chores, and giving financial and emotional support.
Both parents and their children need friends' support to cope with a disabling condition. Turnbull and Turnbull (1990) state, "Friendships between people with and without a disability can provide social support for the person with a disability, as well as for his family" (p. 360). Friends should include not only other families of children with disabilities, but also families of children without disabilities.
Although families of children with disabilities tend to meet and become friends with families of children with the same disabilities, "the promotion of social networks with families whose children are normally developing would also appear to be an important goal" (Bailey & Winton, 1989, p. 107).
As a parent of a son with severe disabilities, Ahlgren (1985) sees no difference between her family and supporting friends-in her definition and experience, they are all family. Her friends were always there to express interest, concern, and sympathy, and to offer help and support when there were frustration, challenging behaviors, negative medical or educational diagnoses, and various parental feelings. Her friends include people in the community, such as the policeman, neighbors, the grocery clerk, professionals, and other parents of children with disabilities. Most importantly, these friends give Ahlgren's family and her son dignity. Together they "create a real and strong demonstration and affirmation of [her son] Todd's—and all the others who share his challenge—capacities to grow, to be an individual, and to survive" (p. 3).
A number of people and families live close to the family of a child with a disability. They are neighbors who provide "a[n] important source of support with short-term assistance such as babysitting, meals during an illness, and care of property in one's absence" (Fewell, 1986a, p. 5). In addition, neighbors can also provide emotional and moral support and, thus, increase community awareness and positive attitudes toward persons with disabling conditions. Moeller (1986) invites parents to look at themselves and review their own sensitivity and vulnerability. She asks parents to learn to differentiate a smile from a passerby as out of pity or out of friendliness and to review their own emotional guard. It is with mutual trust that a helping relationship can be established with friends and neighbors.
Educators, rehabilitation specialists, counselors, and related human service personnel may provide professional assistance to help parents cope with the challenge of having a child with disabilities. Begab and Richardson (1975) suggest the following:
It is essential to build trust between consumers and professionals. Opportunities for joint planning for common objectives seem to foster collaboration and trust. Openness on the part of professionals is also useful. A community-oriented program such as BDS sees no contradiction in consumers operating their own programs provided the programs are effective, well run, and do not duplicate existing services. Another reasonable way of promoting better professional and consumer understanding is through the mechanism of establishing procedures for the joint evaluation of the effectiveness of services and "normalization" experiences. The results of the studies would enable us to plan more realistically and collaboratively in the future (p.413).
Professionals should be trained to get to know parents and families through functional and productive approaches, such as active listening and helping parents to relax. They should provide parents with valid and understandable information. Finally, they should work together with parents as a team for planning and achieving realistic goals (Hollingsworth & Pasnau, 1977; Lian, 1984).
There have been efforts by administrative and inservice professionals to help school personnel establish and maintain productive relationships with parents. For example, Brock and Shanberg (1990) provide guidelines for conflict resolution and prevention of unnecessary due process hearings. Scharf (1990) describes parent workshops for enhancing communication skills, problem solving and conflict managing strategies in order to achieve more positive and productive parent-school relationships.
Walker (1989) lists a number of community resources for family support services. Many of these resources assist families in (a) keeping children with disabilities at home; (b) strengthening their caregiving capacities; and (c) increasing the quality of life of persons with disabilities and their families. In addition to governmental agencies and projects, Fewell and Vadasy (1986) include other resources for parents and families, such as national disability, special education and rehabilitation organizations, written resources (directories and guides), specific resources (according to types of services or disabling conditions), sport organizations, and religious groups.
Lian (1990b) suggests the following community resources for parents of children with disabilities:
- Governmental agencies such as offices for supplemental social income, the American Printing House for the Blind, Head Start agencies, the department of mental health and developmental disabilities, the department of child and family services, the department of public aids, the department of rehabilitation services, the state office of human rights and advocacy, the state planning council on developmental disabilities, state and local libraries, and local park and recreation agencies
- Professional organizations such as the Council for Exceptional Children (CEC), The Association for Persons with Severe Handicaps (TASH), organizations for children with learning disabilities, American Association on Mental Retardation (AAMR), and the American Alliance of Health, Physical Education, Recreation and Dance (AAHPERD)
- Service organizations such as the Easter Seal Rehabilitation Center, the United Cerebral Palsy Association, YMCA, YWCA, the March of Dimes Birth Defects Foundation, the Epilepsy Foundation, the Cystic Fribrosis Foundation, and the National Lekotek Center
- Parent support groups such as the Association for Retarded Citizens (ARC),the National Society for Autistic Children and Adults, the Spina Bifida Association of America, The Muscular Dystrophy Association of America, and the National Society for Children with Down Syndrome; and
- Charity groups such as the Lion's Club, Rotary Club, Salvation Army, United Way, and the International Shriners.
In addition to the above community resources, there are also educational organizations (Espinosa & Shearer 1986) and community health-care systems (Mallory, 1986). Educational organizations, such as school districts, regional special education cooperatives, and educational learning resource centers, provide parents with systematic education and related services, including assessment, prereferral intervention, individualized educational planning, implementation, and progress evaluation, school health and school nurse, counseling, physical, occupational, and speech/language therapy, and transportation. Community health-care systems offer diagnosis, referral, treatment, and financial assistance (for example, constant care allowance, health maintenance organizations, or HMOs, and alternative payment mechanisms) (Mallory, 1986).
Religious organizations in the community can be another source of support for parents and families of a person with disabilities. Fewell C1986b) lists four major kinds of religious groups' support. Instrumental support includes material goods and services such as food, medical supply, and transportation for medical treatment, money and gift certificates, and other forms of goods and services for those in need, whether church members or not. Emotional and social support can be provided through a pastor's active listening, consultation, and prayer; church members' fellowship, music, social, and recreational activities; and the church congregation's sharing and support. Joining a religious organization, parents of a child with disabilities may look for two different kinds of educational support. The first is the opportunity for their child to participate in church activities and to be involved in religious programs. The second is to help parents to carry out their responsibilities of raising a child with disabilities. Religious organizations provide their members with structural support through the major developmental milestones in church life, including baptism, membership, marriage, death, rituals, and corporate worship such as "the Catholic Mass, the prayer meeting, the church or temple service" as well as "a religious organization's stated principles or beliefs that are central to the organization in the forms of written scriptures, creeds, and doctrines" (Fewell, 1986b, p. 308). Through these different kinds of support, parents and families of children with disabilities may develop a feeling of belonging to a church or community family. Parents may no longer feel alone when coping with the situation of having a child with disabilities.
However, it is not uncommon that parents of children with disabilities do not turn to religious organizations for help and support. Possible reasons include: (a) different theological explanations on disabilities; (b) church groups and personnel who are not trained or prepared for counseling parents and families of children with a disability; and (c) parents, as well as the society, tend to see disabilities as a medical, instead of a religious, problem (Drew, Logan, & Hardman, 1984).
As society becomes more and more complex, many of the duties that used to be performed by families are transferred to agencies and organizations outside the family. For example, education may be shifted from the home to the school (Winch, 1971). It is recommended that parents and families have the opportunity to be away from the child with a disability at regular intervals (Hollingsworth & Pasnau, 1977). This can be achieved through friends, neighbors, baby-sitters, day care services, foster family care, or the formal respite program of some social agencies and organizations (Adams, 1975). Kirk and Gallagher (1989) pinpoint the significance of respite care provided by community agencies:
One of the primary stressors of life with a severely handicapped child is day-to-day care—feeding, dressing, toileting. A dependent child must have someone's help to survive. Often the emotional and physical demands of that care leave the caregiver (usually the mother) with no strengths for other relationships or activities. Community agencies now offer respite care to families with handicapped children. A trained individual comes into the home for a certain number of hours a week or for a weekend a month, to relieve the primary caregiver (p. 24).
Singer et al. (1989) find that, besides general support of respite care and case management, intensive intervention can significantly decrease parents' depression and anxiety. Such services may include stress management, parenting skill training, support groups, and community-based respite care. When assisting parents to cope with the situation of having a child with disabilities, Spiegel (1982) suggests that the following be kept in mind:
(a) the value patterns characteristic of the family's culture of origin; (b) where the family is in the acculturation process-that is, what values have been or are being changed at the time of intervention; (c) the family's understanding or misunderstanding of mainstream American values; [and] in the case of cross-cultural marriages,...(d) what conflicts have occurred between two native value patterns. (pp. 45-46)
Collaborative assistance should be provided to enable parents and families to utilize internal and external resources. These resources can be located and arranged to be helpful for each individual family's specific needs and goals.
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