What Family Characteristics and Stressors Impact Participation in Children's Education?

The Family System and the Effects of a Disability

Understanding the concept of family systems and the stressors on families that influence their active participation in the schools is important for improving relationships. A family is a complex social system in which no member can be viewed in isolation: What affects one family member will affect all family members. Having a child with a disability adds another dimension to the complexity and challenge of raising a family.

It is important to recognize that families of children with disabilities pass through stages of adjustment from the moment they learn of their child’s disability. Kubler-Ross (1969) identified several stages an individual passes through when dealing with death. These stages include (1) initial shock, (2) disbelief and denial, (3) anger and resentment, (4) depression and discouragement, (5) bargaining, and finally, (6) acceptance. This model has been extensively applied to families of children with disabilities upon learning of the birth or diagnosis of a disability in their child.

The Family Systems Model defined by Turnbull, Brotherson, and Summers (1985) presents a framework for analyzing the strengths and needs families bring to relationships with professionals. The model consists of four family subsystems: (1) the spouse subsystem (husband and wife interactions); (2) the parental subsystem (parent–child interactions); (3) the sibling subsystem (child–child interactions); and (4) the extrafamilial subsystem (nuclear family interactions with extended family and networks of social, community, and professional support). The presence of these subsystems differs from family to family, as do the resources and strengths within each. For example, the spousal subsystem may be less significant in a single- parent family; in other families, the special needs child may have many siblings who serve as supports and role models.

A Resilience Framework for Family Participation

Caution must be used by professionals when applying coping models such as the Kubler-Ross (1969) “cycle of grief” to family responses to their children’s disabilities. Attributions to families, such as “in denial” or “still in the grieving cycle,” are often used by professionals to explain a perceived lack of cooperation by these families. Many families find this judgment by professionals to be “condescending and patronizing” (Snow, 2001; Ulrich & Bauer, 2003) and a clear barrier to effective communication and partnership. Although there is certainly a period of adjustment upon learning of a diagnosis, families’ needs and conditions evolve over time. Their lives are a series of reactions and adaptations—a series of transitions and readjustments necessitated by their children’s developmental stages, year in school, severity of disability, and ongoing medical issues (Carpenter, 2000; Lin, 2000; Perske, 1989; Snow, 2001; Turnbull & Turnbull, 2001). The adjustment process is often cyclical rather than sequential.

It is important, therefore, for teachers and other professionals to view families’ adaptations to living with a special needs child as a growth and resilience-building process and seek to recognize the strengths these families bring to that process. More often the disappointment and reevaluation of expectations occurs early on in the adjustment process and becomes intertwined with the task of gaining resilience. Each stage represents natural resilience-building skills that involve knowledge development, self-understanding, empowerment, and, ultimately, enlightenment.

The assumptions upon which the framework is constructed include the following:

1. Parents and family members are the best sources of knowledge about the child and about their own strengths and needs in coping.
2. Parents are under stress and need to be included in the service delivery and support process.
3. Parents possess resilience that may not be immediately appreciable, but should be identified and built upon.
4. Parents are engaged in a continuous adjustment process that can be facilitated if recognized by professionals (Kochhar-Bryant, 2003c).

It is important for teachers, related services specialists, and administrators to deepen their understanding of the implications of specific disabilities for their own work with families. Parents are among the best sources of information about what works best in support of their children’s learning.

Families in the Context of Home and Community Environments

Since each student functions within the wider circle of the family and the family’s surrounding community, each student affects these circles and, in turn, is affected by them. He or she brings school concerns home and home concerns to school and often both home and school worries are brought into the community. The outcome may be constructive participation in the community through sports, volunteer work, or projects, or it may involve releasing home–school frustrations through activities that are not constructive.

Along with the type and degree of disability, it is also important to be aware of the onset of the disability and the characteristics of the family’s support system. Some children are diagnosed at birth, others when they are 2–5 years old. Still others may not be diagnosed until they are in the second or third grade or later and begin to experience academic difficulties. Some disabilities such as cerebral palsy may require medical intervention and supports. Visual and hearing disabilities require adaptive equipment and accommodations, whereas severe learning disabilities often require intensive remediation once a child enters school. Whatever the disability, the cumulative impact on the family can mount daily. For example, consider the following questions: How does having a child with severe muscle coordination challenges who must rely on the use of a wheelchair affect family outings and vacations? How does having a child with severe emotional disturbance affect the family interactions within the immediate and wider family and with their community of friends? How does having a child with a disability affect the degree of mobility parents have to leave current positions and pursue new work with different employers? How does the family view their child’s disability? Are there co-occurring disabilities (two or more disabilities that exist together) that require supplemental services from multiple sources? As teachers and related professionals communicate with parents, it is important that they be cognizant of potential limitations in life style and options for some families of children with disabilities. It is important that professionals remain alert to the variety of coping strategies that many parents demonstrate, such as viewing their child as a source of strength, learning, and appreciation in their lives.

Importance of fathers. Research has demonstrated the importance of fathers in their children’s overall development and achievement in school (Baron, Byrne, & Brandscrombe, 2006; Clarke-Stewart, Gruber, & Fitzgerald, 1999; Coleman & Garfield, 2004; Engle & Breaux, 1998; Fagan & Iglesias, 2000; Lambie, 2000; Lewis, 2003). Having a child with a disability can create additional stress on a marriage and is reflected in the high divorce rate among these families. Stepparents particularly face special stresses in coping with a special needs child. While they may have accepted the fact that their new spouse has a child with a disability, they often lack experience with the day-to-day coping (Barnett, Clements, Kaplan-Estrin, & Fialka, 2003).

Blended families. Stepparents may have different ways of coping with stress than do biological parents. Some may internalize their feelings and be unable to openly communicate with their spouses about having a child with special needs. The friction caused by these differences can add stress to the couple’s relationship. If the result is a divorce, the stressors facing the single parent can be exacerbated when one or more of the children have a disability. What happens at home can have a profound effect on how a child functions at school. All these factors are interrelated and can affect the educator’s relationship with the student and the family (Barnett, Clements, Kaplan-Estrin, & Fialka, 2003). Professionals, however, should also be alert to the fact that many blended families become stronger with the presence of a child with a disability.

Families vary in makeup, stability, socioeconomic levels, and education and have different expectations for their children. Communities also vary in size, history, geography, and socioeconomic levels. Within these communities are entities that care for and have contact with families and students, such as parent resource centers. As Epstein (2001) advises, “Educators need to know the context in which students live, work and play” (p. 5). The whole child must be considered, including all the aspects that affect the child within the home, school, and community.