The Impact of a Child with Disabilities on the Family

The birth of a baby with disabilities or the discovery that a child has a disability is an intense and traumatic event. Many studies have been conducted on the emotional responses and adjustments of parents of children with disabilities (e.g., Blacher, 2001; Eden-Piercy, Blacher, & Eyman, 1986; Ferguson, 2003; Frey, Fewell, & Vadasy, 1989; Johnson, 1993). This research has shown that most parents go through an adjustment process, trying to work through their feelings. For example, widely cited research by Blacher (1984) found three consistent stages of adjustment. First, parents experience a period of emotional crisis characterized by shock, denial, and disbelief. This initial reaction is followed by a period of alternating feelings of anger, guilt, depression, shame, lowered self-esteem, rejection of the child, and overprotectiveness. Eventually, parents reach a third stage in which they accept their child. Based on their observations of 130 participants in two parent support groups over a period of several years, Anderegg, Vergason, and Smith (1992) have developed a revised model of Blacher’s work they call the grief cycle, which consists of three stages: confronting, adjusting, and adapting.

Poyadue (1993) suggests a stage beyond acceptance or adapting that involves appreciation of the positive aspects of family life with a child with a disability. There is growing evidence supporting this concept. For example, Patterson and Leonard (1994) interviewed couples whose children required intensive home care routines because of chronic and complex health care needs and found roughly equal numbers of positive and negative responses. Among the positive responses was that caregiving brought the couple closer together and created a stronger bond among family members. In another study, the majority of 1,262 parents of children with disabilities agreed with the following statements about being the parent of a child with a disability: “The presence of my child is very uplifting. Because of my child, I have many unexpected pleasures. My child is the reason I am a more responsible person” (Behr, Murphy, & Summers, 1992, p. 26). Skinner, Bailey, Correa, and Rodriguez (1998) found many of the 150 Latina mothers in their study believed that having a child with disabilities made them better mothers. And parents in several studies reported not only coping successfully with the challenges posed by a child with disabilities but said that their families experienced benefits because of the child (Bradley, Knoll, & Agosta, 1992; Meyer, 1995; Naseef, 2001; Stainton & Besser, 1998).