Parental perspectives on recent childhood disability diagnosis

¶ … Heward reference is a book review of Nancy Close's book Listening to Children: Talking With Children About Difficult Issues -- It is improper to reference a book review-unless of course you are also reviewing the book. I have included the proper reference

Perhaps the one of the worst fears of new parents is that their child may develop a serious disability such as mental retardation or other developmental disability. Arguably the most important influences on the development of any young child would be the child's parents and the sociocultural environment in which the child grows up (Skinner & Weisner, 2007). This socio-cultural environment includes the family environment, community environment, and geographic locale including all shared beliefs and assumptions about child development and about disabilities. However, one can argue that the most important aspect of the sociocultural environment that a child with a disability grows up in is the influence of the child's parents and family. Certainly the parental reaction and parental perspective of the disability status of the child is an extremely important factor influencing the child's development.

Traditionally professionals have viewed the perspective of parents who have a child recently diagnosed with a disability in terms of a stage model where the parents traverse through a series of discrete identifiable stages, each with a particular crisis or goal to overcome. The crises usually begin with some form of denial and end with some type of acceptance. Sands, Kozleski and French (2000) reviewed the literature regarding the effect of a diagnosis of a child with a disability on families and suggested that this may be a stereotypical view of these parents as being under such severe stress that they are unable to meet such challenges realistically, such as going through an initial denial stage. The use of the term "denial" or being "in denial" as a description for the parents of children diagnosed with disabilities stems from Kubler-Ross' (1969) work on death and dying in which she delineated the stages of grief, the first of which was denial. Many professionals believe that these stages are reflected in the experiences of parents with children diagnosed with a disability, hence many stage models regarding these parents are suspiciously similar to Kubler-Ross' theory of grief or bereavement over a loss. However, other researchers have suggested that this may not be a realistic analogy (e.g., Howard, Williams, Port, & Lepper, 1997). Kaster (2001) noted that parents with a newly diagnosed child with a disability often report they experience feelings such as guilt, acceptance, despair, or denial all within a few minutes of dealing with their child or the diagnosis. Other researchers such as Miller (1994) have resisted that concept of a linear stage model for these parents. Instead Miller (1994) viewed the process as a series of adaptation that has a circular quality and included surviving, searching, settling in, and separating. Other researchers indicate parents display a wide range of responses to the diagnosis of their child's disability.

The parents of children who are diagnosed with the disability can display a variety of reactions and perspectives regarding the child's special needs. These reactions can focus on either positive or negative aspects of the child's disability. Much in the same way the that individuals who suddenly receive a very severe medical diagnosis the parents of a child recently diagnosed with a disability may go through several emotions sequentially or may experience specific discrete reactions (Ferguson, 2002). These emotional states will also affect the perspective of the parents. These perspectives can range from being pervasive and affecting the entire family structure to more specific and pragmatic in nature. Ferguson (2002) reviewed the literature and outlined three main several specific possible reactions / parents have when learning that their child has a disability. These three categories of reactions include grief, ambivalence, and optimism. Other reactions such as the traditional notions of denial or acceptance were incorporated within these three reactions. Ferguson (2002) does not describe a stage theory where a parent goes through grief, ambivalence, and optimism in that particular order but instead groups a number of perspectives that occur in many stage theories within these three general categories. For example, feelings of guilt, anger, denial, etc. could be present in any of these categories but were expected to be more prevalent in the grief or ambivalence categories. The traditional stage of acceptance (Close, 2002) can also occur in any of these categories but certainly would a part of the optimism category. These three categories of reactions reflect the perspective that the parents assume in response to learning that a child has a disability and may be chronic or temporary and could occur separately or together.

Grief

There may be a large subset of parents that experience feelings of grief concerning the diagnosis of a disability and their child. Watson, Hayes, and Radford-Paz (2011) note the grief can result from earlier perspectives that parents were the cause of their child's disability (either through heredity or upbringing). While this notion is no longer popular, parents may still feel a sense of responsibility for their child and often attribute some of the blame to themselves. The grief can range from distress concerning the issues that the child will have to experience as a result of their disability to self -- pity as a result of the added inconvenience, stress, and involvement that the parent may have to endure as a result of the disability. These feelings of grief can be temporary and give way to more pragmatic and focused perspectives to help a child; however, it is also possible for parents to experience chronic grief regarding a child's disability.

The grief resulting from a recent diagnosis of a disability in the child might also stem from the type of grief or bereavement that individuals experience with the loss of a loved one (Bruce, 2001). In addition to the grief associated with the diagnosis itself parents of children who are diagnosed the disability may experience grief associated with many secondary losses which are anticipated to follow such as normal experiences with the child's development, anticipation of developmental milestones, etc. Bruce and Schultz (2001) have termed this type of grief cumulative or non-finite loss as opposed just to a type of bereavement over a lost person. They point out that parents often grieve over the anticipated lack of achievement the child would normally experience during developmental, social, and academic markers as well as the stigma of a disability. In addition, the parents will often experience grief for their own lost opportunities, personal growth, and achievements regarding the normal anticipated markers of child development. They often anticipate being socially isolated from other parents and withdrawn from "normal" experiences of academic, social, and other achievements in response to the child's disability.

Grief can be a very complicated process that can include feeling devastated, overwhelmed, or even traumatized at learning of the disability. It can also include such things as (Ferguson, 2002; Howard et al., 1997; Stroebe & Schut, 2001):

Guilt, shame, or feeling as if one is responsible.

Wondering if the child would be better off if the child had died Intense anger directed at all educators and professionals involved with the child.

A loss of self-esteem or a feeling that one is a poor parent is unable to protect or provide for the child.

Depressive symptoms.

Becoming overprotective of the child.

Severely strained family and marital relationships.

A disruption in normal family routines.

Parental grief regarding a child recently diagnosed with a disability can be very complex in its nature; however, much of the literature tends a focus on bereavement. Bereavement is often centered on a specific or singular loss, whereas the grief it parents experience in response to the disability diagnosis of a child may be more complex. A dual process model of grief that allows for parents to alternate between confronting and avoiding the perceived loss (and grief) may be a more appropriate model (Stroebe & Schut, 2001). As opposed to simple stages of grief where the individual is proposed to experience a series of set stages in a specific order (e.g., Kubler-Ross, 1969) the dual process model allows for individuals to alternate their feelings and perspectives in order to maintain a sense of stability. For example, a parent may express denial that the disability is permanent (which allows for time to adapt to the trauma associated with the diagnosis) and at the same time be very proactive and involved in long-term planning to help the child cope with the disability.

It is certainly important for educators, physicians, etc. To recognize that experiencing grief after a child has been diagnosed with a disability is a relatively normal reaction and can either positively or negatively influence the course of the child's development, the decisions of the parents, and even the attitude of educational specialists or other people involved with the child over time.

Ambivalence

Ferguson (2002) also noted that parents may experience feelings of ambivalence directed at the child that was diagnosed with a disability and at the entire situation. Such ambivalence could develop when the parents realize that the child's disability may be permanent, as they explore the different options the child can follow for dealing with the disability, or as they begin to contemplate how the disability will affect the future for both the child and for the family. Ferguson (2002) also notes that educators often present the parents of children recently diagnosed the disability with enormous amounts of information, requirements, suggestions, etc. that are presented with very little explanation or justification for their relevance to the particular child and parents are required to consult with many different types of educators, physicians, counselors, social workers, etc. This overload of information and the need for special considerations often results in a perspective of ambivalence by the parents that as a sort of defense mechanism to protect them from becoming emotionally overburdened.

Bostrom, Broberg, and Hwang (2010) analyzed the perspectives of the parents of nine children regarding their reactions to the recent of the diagnosis of disabilities in the children. Disabilities diagnosed in the children varied ranging from autism to spinal muscular dystrophy. In contrast to grief and affective descriptions they also found that some parents expressed predominantly negative descriptions of child with indications of ambivalence, resistance or distance towards the child suggesting that the notion of ambivalence as a defense mechanism was supported.

Ambivalence may be temporary or chronic. Ambivalence and related perspectives such as apathy, feelings of being overwhelmed, helplessness, etc. can be very difficult to recognize and lead to helping the child and parent receive the optimum effective intervention and care. There it is important that these perspectives be identified and steps taken to help the parent achieve a sense of control and optimism regarding the child (Ferguson, 2002).

Optimism.

According to Ferguson (2002) often parents will take the perspective that despite the diagnosis of a disability the child is still much like any other child except that there are special obstacles or circumstances to deal with. For these parents the particular disability or special requirements are simply part of the overall pattern of needs that any child may require. Often some parents do not experience significant grief or ambivalence but simply approach the diagnosis of a disability and their child with an attitude of diligence to making sure that they can help optimize their child's educational experiences and therefore are often very hopeful about their child's future. Such parents often become quite involved in their child's education and may work closely with the child's teachers, physicians, tutors, etc. To ensure that the child has every opportunity possible.

Bostrom, Broberg, and Hwang (2010) found this type of perspective was very common in their sample of parents recently learning that their child had a disability. Most of the parents gave balanced and affectionate descriptions newly diagnosed child characterized by such perceptions as a balanced description of the child's positive and negative characteristics, but most often emphasizing the positive characteristics; describing the child as an individual, describing well-functioning routines and parent -- child interactions; and positive and affectionate/loving descriptions off the child.

Barnett, Clements, Kaplan-Estrin, and Fialka (2003) believe that often the optimism is actually a recovery process following a period of grief or ambivalence that consists of rebuilding, updating, and replacing the hopes and expectations the parents possessed prior to learning of the child's disability diagnosis. Borrowing from the research and theories of human attachment, loss, and caregiving this perspective places an emphasis on a process of initial grief and then reorganization of belief. The parents initially experience grief regarding their expectations and images of anticipated or hoped for experience of child development when they are faced with a new disability diagnosis in their child and in order to move forward they have to let go of these old expectations or beliefs as to how things should be. This requires the parents to develop a schema of their child's actual capabilities in contrast to what they originally imagined or wished for. This new schema allows the parents to respond realistically and more sensitively to their child's needs, thereby promoting a much more secure and positive relationship with the child. For many parents the process begins with grief resembling bereavement and eventually moves to a more realistic and optimistic understanding of the disability and how the parent will help the child to adjust to the demands of their disability. Nonetheless, optimism in any form is not an uncommon perspective in parents who have a child recently diagnosed with a disability.

Other Factors Affecting the Parents' Perspective

There are several additional factors that can potentially influence the perspective of the parents of the child with the newly diagnosed disability. Of course one factor is the type of disability involved. For instance, the perspective of parents that have a child diagnosed with a reading disability while the child is in grade school will very likely be quite different than that of parents who learn that their child is blind when the child is only two months of age (Barnett et al., 2003).