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Ordinary families, special children: a systems approach to childhood disability.

Ordinary Families, Special Children: A Systems Approach to Childhood Disability

Although we know little about how grandparents react to the birth of a grandchild with a disability, it is likely that they experience a mourning period for the loss of the idealized grandchild they had expected. Just as the parents experience the "death" of the expected normal, healthy child, so, too, may the grandparents feel a great loss and mourn the death of what they had wished for. They may go through the same stages as the parents: denial, grief, anger, and eventually acceptance. Reporting on the reactions of grandparents who attended the grandparents' workshops at the University of Washington, Vadasy and colleagues (in press) report that their initial reactions were most often sadness (67%), shock (38%), and anger (33%). Forty-three percent reported that they continued to feel sad long after they first learned of their grandchild's disability, but 57% expressed eventual acceptance of the problem.

Grandparents may be mourning at the same time as the parents. In the crisis-laden initial period of discovery, both the parents and the grandparents may be experiencing great loss and grief; they may therefore be unable to be supportive of one another. According to Gable and Kotsch (1981), grandparents may be in a state of "diminished capacity" for providing help to the child's parents. Whatever the initial reactions, professionals need to be cognizant of what different family members are experiencing so that they can take these reactions into account in counseling.

[W]e have suggested thus far that grandparents, through their lack of support, can be a source of considerable consternation to the nuclear family of a disabled child. The sense of threat and vulnerability, the loss they experience, the ambiguity the situation holds for them, their denial and lack of acceptance can indeed be burdensome for the family. However, perhaps for most families with a disabled child who have living extended family, the situation may be more positive. Indeed, as Vadasy and Fewell (1986) report, mothers of deaf-blind children ranked grandparents high on their list of supports.

Grandparent contributions to varied. For example, Vadasy and the nuclear family can be many and colleagues (in press) conceive of grandparents as valuable resources to their grandchildren and the rest of the family. Due to their experience, grandparents have much to offer in advising about child care, providing access to community resources, and in sharing coping strategies that helped them in the past. Because they also have time available, they can assist with shopping, errands, and child care; and any type of respite from the daily chores of caring for a disabled child is welcome. Respite services are not available in some communities, making this a most valuable contribution to the family. Furthermore, because of their community contacts grandparents may be able to provide the family with access to services within the community. For example, as noted by Vadasy and colleagues (in press), through the grandparents' church group, the family might gain access to child care, special equipment, and other types of support.

Perhaps the most important type of help from the extended family is emotional support. The support of grandparents during the initial diagnostic and "first knowledge" phase and throughout the child's development adds immeasurably to the parents' ability to cope, and it provides excellent role models for siblings as well.

"You think that after you've raised your children you can stop being a parent and become a person again. And then your adult child experiences tragedy or loss, and your heart aches with the knowledge of your own importance and how you yearn to go back to the days when a Bandaid and a kiss could fix anything. Who are we to try to advise our children? How can we see beyond the moment, how can we diminish their pain or give them our patience and our constancy, and try to keep our own hope alive" (Click, 1986,p.3).

"From the very beginning, there was no question that she was accepted, just like any other child born in our family. I remember how the whole family rallied. They said that she would be fine, and it meant a lot to us to have that family support. They sent us cards and flowers and gifts and did all the things you do when a baby is born. And I think that was so important, because, after all, she was a baby first, and then a baby who had problems" (Vadasy et al., in press).

Grandparents can thus be a source of emotional support and instrumental assistance; but, as noted above, they can also add to the family's burden when they are not accepting of their grandchild and fail to be supportive. The question, then, is how professionals can help those grandparents who wish to be involved and useful as well as those who are struggling with their feelings and, as a result, find it difficult to come to terms with the family's crisis.

Vadasy and colleagues (in press) believe that grandparents have similar needs to those experienced by the parents, namely, support and information. Based on the notion that most grandparents want to be supportive and can potentially be helpful to the family emotionally and instrumentally, Vadasy and colleagues developed the grandparents' workshop model at the University of Washington in Seattle. The Seattle researchers believe that grandparents can add to family stress if they lack adequate information or have unrealistic expectations for their grandchild's potential. Conversely, they believe that access to accurate information can contribute to the grandparents' acceptance and resultant support.

From their research, Vadasy and colleagues (in press) found that grandparents were lacking in a number of areas. For example, they wanted to have more information on available therapies for their grandchild, know more about the child's disability, have some idea of what the child's potential might be, and the like. They often questioned whether they were doing the right thing with their grandchild and expressed concern about the future. Based on these and other concerns, the University of Washington grandparents' workshop model was developed (Meyer & Vadasy, 1986).

Another program sensitive to the needs of the extended family is the Family, Infant, and Toddler Project at Vanderbilt University (Gabel & Kotsch, 1981). The extended family component consists of bimonthly evening clinics for grandparents and other kin. During the clinics, therapies are explained, educational programs are reviewed, and a portion of the meeting is opened to questions. Gabel and Kotsch report that the relatives are more understanding and helpful after attending the family clinics. Sonnek (1986) reports on a number of localities that have extended their programs for disabled children to include nuclear and extended family members. Although the inclusion of the extended family in existing programs seems to be gaining more acceptance, there is little empirical evidence regarding these individuals' effectiveness in supporting the immediate family.

Based on the belief that grandparents are important resources and that their involvement benefits themselves as well as the nuclear family, we agree with Vadasy and colleagues (in press) when they remark that "all professionals would be wise to look more closely at the extended networks of the families in their programs to appreciate the contributions that extended family members, like grandparents, make, and to recognize and foster their concern for the child and family." Sonnek (1986) also supports this view when she states that "it appears the grand-parents, to date, have been an unrecognized and possibly an underutilized resource in the study of the nuclear family"
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Title Annotation:excerpt from book by same title
Author:Seligman, Milton; Darling, Rosalyn Benjamin
Publication:The Exceptional Parent
Date:Apr 1, 1989
Previous Article:But not enough to tell the truth; developmental needs of siblings.
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