Family Systems

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).
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 situationsfelt 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.