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).
Educators should refrain from expecting parents of children with disabilities to exhibit typical reactions. Relying on any stages-of-adjustment theory as the basis for planning or delivering family services poses three potential problems. First, it is easy to assume that all parents must pass through a similar sequence of stages and that time is the most important variable in adjustment. In fact, parents react to the arrival of a child with disabilities in many ways (Lin, 2000; Turnbull & Turnbull, 2006; Ulrich & Bauer, 2003). For some parents, years may pass, but they still are not comfortable with their child. Yet other parents, as we have just discussed, report that having a child with disabilities has strengthened their life or marriage (Scorgie & Sobsey, 2000). The sequence and time needed for adjustment are different for every parent. The one common thread is that almost all parents and families can be helped during their adjustment by sensitive and supportive friends and professionals (Fox, Vaughn, Wyatte, & Dunlap, 2002).
A second concern is that many parents view stages of mourning and adjustment as patronizing and condescending, which hinders meaningful communication (Snow, 2001). And third, some stages-of-adjustment theories have a distinct psychiatric flavor, which may lead professionals to mistakenly assume that parents must be maladjusted in some way and in need of counseling.
© ______ 2002, Merrill, an imprint of Pearson Education Inc. Used by permission. All rights reserved. The reproduction, duplication, or distribution of this material by any means including but not limited to email and blogs is strictly prohibited without the explicit permission of the publisher.