Family Systems

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This article is based on the premise that families of children with disabilities, like families of all other children, want their offspring to have meaningful, enjoyable, and successful lives. Furthermore, it recognizes that in order for this to be possible professionals must respect and appreciate each family's unique position as they strive toward this end. The overall family dynamics that are impacted by the presence of a child with a disability are first presented. Second, the reader is introduced to fathers and siblings and their perspectives, which are often neglected in a literature that has traditionally emphasized the mother's role within the family system. Finally, parental viewpoints and opinions regarding community inclusion for their children with disabilities are discussed.

Adjustments: Dealing with the Disability

Reactions

When a family is first told their long awaited "bundle of joy" has a disability, it is not easy to predict how each family member will react (Powers, 1993). Most families first receive this information from medical professionals while they are dealing with the hospitalization of their infant or toddler (Long, Artis, & Dobbins, 1993; Pearl, 1993). Receiving information pertaining to the birth (or diagnosis) of such a child is indeed overwhelming (Buck, 1950; Long et al., 1993; Meyer, 1986b).

Each family member's reaction stems from intense feelings and draining emotions, often leaving them confused, bewildered, and full of questions. Of course, a major key to working effectively with such families is to respect their right to express this intense and constantly varying range of emotions (Fewell, 1986; Gibbs, 1993).

Over the years I have often heard that parents must learn to accept the fact that their child has disabilities. I know no parent who hasn't accepted their child's disabilities. When you get up in the morning and force your child's legs into braces, put them in a wheelchair, feed them breakfast, give their antiseizure medication, you have accepted and are dealing with your child's disability. (Statum, 1995, p. 68)

Professionals naturally may make generalizations regarding how parents might react and respond to their child with a disability. This is usually in hope of working more effectively with the families. Often, however, the parental feelings, emotions, and behaviors are unpredictable. After all, few families are prepared to face the complex issues confronting them (Singer & Powers, 1993).

Emotional Impact

Parental expectations regarding their child's disability can be strongly influenced by the different types and severity of the disability (Fewell, 1986; Kroth & Edge, 1997). Parents have long anticipated the birth of their child and their anticipation is full of hopes and dreams. Parental grief and reactions to the birth of their child with a disability is a result of the loss of their "normal" child (Murray & Cornell, 1981).

Thus the birth of a child with a disability is frequently a stressful event for families due to the variety of feelings, reactions, and responses felt by the various family members (Dunst, Trivette, & Jordy, 1997; Featherstone, 1980; Murray & Cornell, 1981; Turnbull, Brotherson, & Summers, 1985). Farber (1975) indicated several adaptations that families develop when having a child with a disability. Murray (1980) indicated that families frequently go through a series of reactions and responses. Kirk and Gallagher (1989) and Kubler-Ross (1969) found that some parents and other family members, including siblings, grandparents, and other extended family members, are faced with a variety of feelings, reactions, and responses at the birth of a child with a disability. These feelings, reactions, and responses may change as life goes on, especially as the internal and external resources increase (Kroth & Edge, 1997).