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

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Many factors influence the relationship of parents and professionals in their children’s schools. These factors include the effect of the disability on the family, the type and severity of the disability and its impact on the school, and the effect of culture on attitudes about disabilities.

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.