Family Systems

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).

Even though family members report additional stress from a child with a disability, they also experience positive outcomes. In a study by Taunt and Hastings (2002), forty-seven parents of children with developmental disabilities were interviewed. The findings revealed that there were several positive outcomes of having a child with a disability: the parents focused on the positive aspects of their child; they experienced a changed perspective on life; there were opportunities to learn about children, themselves, and others; it improved the family dynamics; there were opportunities to meet and share with other parents of children with disabilities; and they were able to influence policy.

Professionals have become more aware of how family members are affected by the presence of a child with a disability. Professionals also need to take into consideration the roles and needs of each family member (Goldenberg & Goldenberg, 1980; Turnbull et al., 1985). Turnbull's and Turnbull's (2001) framework for understanding the emotions, dynamics, and elements of family systems has allowed professionals to work more effectively with these families. The four elements of this framework are (1) family resources, (2) daily interactions among family members, (3) different individual family needs, and (4) changes that occur over time which affect family members (Turnbull & Turnbull, 2001).

Accommodations: Getting On with Life

Adaptiveness

Families are remarkably adaptive to the needs of their child (Seed, 1988; Lobato, 1990; Pearl, 1993). Moreover, the role of each family member assumes varying dimensions depending on the respective attitudes and behavior displayed regarding the child's disability (Meyer, 1986b; Nixon, 1993; Seed, 1988).

A broad range of emotion is experienced while attempting to reconcile those feelings regarding the family's child with a disability (Hawkins, Singer, & Nixon, 1993; Meyer, 1993; Seed, 1988). The anguish and stress are often tremendous, yet somehow each family member learns to cope with a mechanism that is frequently quite efficient in carrying other family members through the substantial turmoil. In other words, the family often draws closer as they depend on one another.

Balanced Lifestyle

A family's daily routine typically focuses around the child with the disability. Thus, their attempt to find a balance in a family routine is an arduous task at best, given that they often are having to juggle appointments dealing with various medical specialists, therapists (physical, occupational, speech and language), and early interventionist home visits. Clearly, it is time-consuming to visit a multitude of professional offices while trying to find answers to questions regarding the diagnosis or treatment of a child with a disability. Also, it is an exhausting pursuit for families to find the best services and newest information regarding their child's condition. Again, the family's attempt to find a requisite balance and perceived normalcy is an issue with which they frequently wrestle.

Child-Peer Relations

Parents are constantly seeking opportunities for children with disabilities to actively engage in typical early childhood experiences with their peers (Boswell & Schuffner, 1990; McLean & Hanline, 1990; Ruder, 1993; Statum, 1995). Also, critical to these children's development is the growth they continually experience from interactions as members of their own families (Frey, Fewell, Vadasy, & Greenberg, 1989; Pearl, 1993; Statum, 1995). Thus, an additional difficulty is the family's effort to continually locate positive peer interactions so their exceptional child has an opportunity to enhance his or her learning experiences (Bailey & Bricker, 1984; Guralnick, 1990; McLean & Hanline, 1990; Ruder, 1993).

Child Care

Finding an appropriate child-care program for any family often is a trying event and even more stressful to families attempting to locate a program that will accept a child with a disability (Fewell, 1986). Quite frankly, child-care providers are not customarily informed on how to work with young children with disabilities and thus are reluctant· to accept responsibility for such children. They are, however, increasingly being asked to care for these children.

Seeking Services

Families seek the best services to provide for their child. Consequently, their homes are often like New York's Grand Central Station in trying to schedule various needed services. Furthermore, opening one's home to the numerous specialists arriving to provide services to their child and family is an intrusion on family privacy with which other families do not have to contend (Hanson, Lynch, & Wayman, 1990; Pearl, 1993). Nevertheless, these families are frequently required to carry out the programs prescribed for their child if they want to ensure their child's progress.

Early childhood special education interventionists attempt to work with families and their children with disabilities in a caring, sensitive, and supportive manner (Fewell, 1986; Pearl, 1993). Obviously, the services provided must be flexible and responsive to the diversity of family needs and resources (DeGangi, Wietlisbach, Possison, Stein, & Royeen, 1994; Hanson et al., 1990).

In addition to handling everyday life stressors, families learn how best to provide for the various needs of their child. Therefore, early intervention services must strive to be family friendly, family focused, and family centered. Moreover, services need to be provided to families in the various settings that each family requires, such as home, day care, or community.

Values

Cultural and religious values heavily influence a family's structure as well as their views of disabilities (DeGangi et al., 1994; Hanson et al., 1990; Howard et al., 2001). Families will differ by cultural, economic, and religious influences, as well as by membership and structure of the family itself (Hanson et al., 1990; Howard et al., 2001). Such values can impact the effectiveness of the family's acceptance and willingness to implement intervention strategies. Therefore, professionals must be respectful of families' value systems and their services flexible enough to be in accordance with differing family value systems and cultures (De Gangi et al., 1994; Hanson et al., 1990; Linan-Thompson & Jean, 1997).

Extended Family

Another important factor is the extended family, which is often a wonderful resource for providing that additional assistance needed in dealing with their child. An extended family can include grandparents, aunts, uncles, cousins, neighbors, and close friends who have joined the family circle. These members frequently provide the continual encouragement, respite relief, moral support, comfort, and unconditional understanding needed by the parents and other family members (Fewell, 1986; Gallagher, Cross, & Scharfman, 1981; Long et al., 1993; Pearl, 1993).

Support Groups

Parents of children with disabilities often need additional support other than that provided by professionals (Long et al., 1993; Meyer, 1993). Consequently, there is a growing network of parent support groups across the nation. Networking is a process linking parents interested in talking to other parents who have coped with similar situations—felt anguish, needed relief, and paved the road for tomorrow (Frey et aI., 1989; Gibbs, 1993; Grossman, 1972). These networks of extended support allow family members to grow through personal shared experiences.