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The Critical Encounter: Facilitating Positive Parent Adaptation to CAS

The somewhat surprising results of this study indicated that despite the overall negative experience parents had with the system, a critical positive encounter with even one service provider was typically influential enough to have a significant, positive effect on parents’ adaptation process, resulting in healthy adjustment and parent empowerment.

Published | By
Colleen Miron, Ph.D.

Background

For a long time, researchers endorsed a very negative view of how parents adapt (or more accurately, how they felt they did not adapt) to having a child with a disability. This model was to a large extent influenced by the negative social-cultural beliefs toward individuals with disabilities that persisted through the 1970s. Examples of positive adaption found in research and practice “were frequently dismissed as denial or as an attempt by parents to alleviate their guilt” (Stainton & Besser, 1998, para. 2). This resulted in a negatively biased framework, which emphasized pathological maladjustment and defense mechanisms in psychological functioning of parents and families of children with disabilities.

Over the past 40 years, the topic of family adaptation, in which researchers investigate how parents adapt to the experience of having a child with disabilities, has evolved significantly. Researchers are now beginning to examine how families adapt from a lifespan, resiliency perspective. This emerging perspective, often referred to as dynamic adjustment or dynamic adaptation, considers the parent experience from a holistic lens, investigating both potential positive and negative aspects of the phenomenon of being a parent of a child with a disability. Specifically, research over the past decade has focused on how support systems, information and education, and cognitive appraisal styles interact to impact parents’ adaptation process. Despite this shift in the research literature; however, negative assumptions about what parents experience when having a child with a disability continue to prevail in the education and medical arenas.

Perhaps this is because most parent adaptation research to date has approached the question of understanding parents’ experiences with the pre-existing assumption that having a child with a disability is a negative experience, seeking only to define and measure the degree and type of negative impact or factors that might mitigate that negative impact. For instance, a study might seek to compare divorce rates of parents of children with and without disabilities or to measure stress of parents with and without disabilities, with the focus and assumption being that the experience of the child’s disability will have a negative impact.

Study of Parents Who Have a Child with Apraxia of Speech

A recent study of parents that have a child with apraxia of speech, however, took a unique approach to understanding parents’ experiences by exploring the topic differently (Miron, 2012). First, parents were asked to describe in their own words their adaptation experience, from the time they first noticed their child was experiencing difficulties to the present day. Second, the author sought to explore the parent experience holistically from a theoretical perspective, allowing an explanation of the adaptation process to emerge from the parents’ stories rather than entering the study with preconceived ideas. When parents were provided with the opportunity to frame their own experiences in their own words, a very different process was revealed from those that have previously been proposed; specifically that parents progress through a stage model of adaptation, ultimately achieving healthy adjustment and positive outcomes. It is important to note that the unique demographics of the participants in this study (high education level, middle-class, active advocates) are critical factors that likely impacted the proposed theory and its applicability to other parents not sharing those characteristics. Additional studies with a larger, more diverse sample are needed.

In the study, 11 parents of children with Childhood Apraxia of Speech (CAS) participated in in-depth interviews.  The study included three husband/wife couples who were interviewed together. All other participants were mothers and were interviewed individually. Parents were asked to describe their family, their actions, and their feelings at various points including the time of initial concern, diagnosis/assessment, treatment, and present day. The theory of how parents adapt to having a child with apraxia of speech that emerged from the data had three distinct components: the reaction phase, the transition phase, and the integration phase.

Reaction Phase

The reaction phase took place when parents first began to have concerns about their child. This phase was characterized by feelings of:

  • Uncertainty
  • Fear
  • Confusion
  • Helplessness

It is on this phase that most past adaptation research has focused.

Transition Phase

Eventually, however, all parents in the study reported a combination of two experiences, which led to a transition in their thinking about their situation. During this transition they moved from helplessness, uncertainty and concern to acceptance, adaptation, and advocacy. The experiences that triggered this transition could in each instance be summarized as the following:

1. A positive critical encounter with an individual professional

+

2. A single significant negative experience  (i.e., misdiagnosis by the school)

or

A culmination of minor negative experiences (i.e. lack of communication, dismissal of concerns).

Integration Phase

Following this transition, parents became empowered and sought to integrate the experience of being a parent of a child with CAS into their self-concept and identity as a parent using five techniques, ultimately resulting in what parents reported as positive, healthy feelings of adjustment:

  1. Self-education
  2. Engaging in purposeful adaptation
  3. Working through conflicts and challenges
  4. Seeking sources of support and growth
  5. Cultivating relationships with service providers

Also found to be integral to parents’ process of adaptation were internal characteristics such as competence, education level, gender, interpersonal skills, and cognitive appraisal style. Additionally, broader environmental contexts such as local and regional resources, family structure, time and financial resources, support from loved ones, marital relationships, and access to community support, as well as local and national policies and practices in the medical and educational fields appeared to be significant conditions impacting parents’ experiences.

Conclusions

The present study led to three major conclusions. First, the adaptation experience of parents of children with CAS and the proposed theory do align with several themes identified in emerging dynamic parent adaptation research related to the importance of external and internal factors and their impact on the parent adaptation experience. Second, a new finding revealed in this study was that critical positive encounters with professionals are vital to facilitating positive parent adaptation. One positive encounter appears to be powerful enough to negate dozens of negative experiences and spark a lasting attitude of optimism and advocacy for parents. Third, with the exception of powerful, but isolated critical positive encounters, parents’ perceptions of and interactions with the medical and educational systems were largely negative, disappointing, and often adversarial.

Recommendations

The results of the present study lead to two primary recommendations for practitioners in their interactions with parents of children with CAS. The first is that professionals must recognize that for the most part, parents viewed their interactions with the medical and educational communities as disheartening and unhelpful, and at times, adversarial.

Despite professionals’ good intentions, parents felt that professionals, or more accurately, the system itself, often did not adequately serve their child’s needs. This particular group of parents was able to advocate for better services for their children and for the most part, secure those services. However, this was only accomplished through the use of considerable time and financial resources, effort, stress, and frustration. Many parents do not posses those same resources or skills to seek similar redress. The results of the study suggest, particularly for disorders that span both the medical and educational communities, that better coordination of services and a more family, service-oriented model is necessary in order to more effectively serve parents and families. Notably, nearly all participants expressed great satisfaction with the early childhood/birth-three programs they worked with, which utilize a family oriented approach to services, and great dissatisfaction once they transferred to the regular K-12 system.

The second recommendation is that professionals capitalize on the impact that they have on the parent experience by working to ensure it is a positive one. The somewhat surprising results of this study indicated that despite the overall negative experience parents had with the system, a critical positive encounter with even one service provider was typically influential enough to have a significant, positive effect on parents’ adaptation process, resulting in healthy adjustment and parent empowerment. Therefore, in the midst of long-term efforts to improve the medical and educational systems, professionals should be inspired by the fact that when they cultivate relationships and interactions with parents that emphasize mutual respect, honesty, competence, and advocacy, they as individuals appear to have a profound positive impact on parents and families.

Author Biography:

Dr. Colleen Miron earned her Ph.D. in Educational Psychology from Capella University, her M.S.E. in College Student Development and Administration from the University of Wisconsin-La Crosse, and her B.A. in Psychology from Winona State University. Her research interests include e-learning, competency-based learning, and children with disabilities and their families.

References

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