26 Nov Giving The News: How to Talk to Parents About the Apraxia Diagnosis

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Giving The News: How to Talk to Parents About the Apraxia Diagnosis

Giving the News: How to Talk to Parents About the Apraxia Diagnosis

The professional who is most qualified to investigate, assess, and provide diagnosis for children’s speech disorders is the Speech-language Pathologist. It may be that after speech/language evaluation, the clinician has reason to refer a child to other health-related professionals in the fields of occupational therapy, behavioral and developmental pediatrics, or pediatric neurology. However, a speech-language pathologist should diagnose the communication (speech) disorder. Reportedly, some service settings discourage SLPs from providing diagnoses; though note that per the American Speech-Language Hearing Association, the SLP is qualified to diagnose CAS.

While there are a number of packaged evaluation kits available, many clinicians use common evaluation techniques to assess children with suspected CAS. Young children with CAS can be especially challenging to evaluate and may be non-risk takers with their speech attempts. In some cases, especially with very young children, an extended period of evaluation in order to elicit sufficient speech samples to make diagnosis is warranted. Overall, tasks used in the assessment process in order to differentiate CAS from other speech sound disorders should include:

Speech production tasks graded from simple to more complex (from simple syllables to challenging multisyllabic words)
The effect of increased length on accuracy (i.e.: me, meet, meeting)
The effect of context on speech accuracy (more; more milk, want more)
Observation of performance on repeated productions of the same target
Documentation of differences between elicited or imitated productions vs. volitional and spontaneous productions
An analysis of types of errors, including omissions, distortions and substitutions
Observations concerning prosody (stress, intonation, rate)
Observations of nonspeech movement sequencing (show me how you bite. Show me how you blow. Bite, then blow)

Common articulation tests alone will not provide the information needed for differential diagnosis, although such tests can provide some information necessary to the process. Additionally, traditional child language tests can provide helpful information about the child’s communication profile but will not provide the type of information necessary to make a differential diagnosis. If clinicians work in settings in which they administer expressive/receptive language testing in order to determine eligibility for services and the clinician suspects the child could have CAS, referral for in depth evaluation of speech production should occur.

Additional Assessment Considerations

While the previous assessment and evaluation discussion centered on the speech production difficulties of children with suspected CAS, several other considerations for planning and conducting assessments should be considered. The literature documents co-morbid language related deficits, thus both expressive and receptive language evaluation should be a part of the evaluation process of documenting a complete communication profile for the child with CAS. Narrative language skills should be a part of that battery, as appropriate, given the current functioning of the child. A structural-functional evaluation should be performed as well in order to document any observations of abnormalities in structures, sensation, strength, range, symmetry, etc. For children who are school age or approaching school age, the evaluation of phonemic awareness and early literacy related skills should be included in assessments. A propensity for literacy related deficits in phonemic awareness, reading, spelling and written expression has been substantiated in children with CAS in recent research and should be considered, regardless of the child’s current level of speech production capability.

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 February 2013 | 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)

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:

Self-education
Engaging in purposeful adaptation
Working through conflicts and challenges
Seeking sources of support and growth
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

Bennett, T., & DeLuca, D. A. (1996). Families of children with disabilities: Positive adaptation across the life cycle [Electronic version]. Social Work in Education, 18, 31-44. Retrieved September 22, 2009, from EBSCO databases.

Ferguson, P. M. (2002). A place in the family: An historical interpretation of research on parental reactions to having a child with a disability [Electronic version]. The Journal of Special Education, 36, 124-130. Retrieved September 22, 2009, from EBSCO databases.

Livneh, H., & Antonak, R. F. (1997). Psychosocial adaptation to chronic illness and disability. Gaithersburg, MD: Aspen.

Miller, W. H., & Keirn, W. C. (1978). Personality measurement in parents of retarded and emotionally disturbed children: A replication. Journal of Clinical Psychology, 34, 686-690. Retrieved September 22, 2009, from EBSCO databases.

Miron, C. (2012). Parent Experience: When a child is diagnosed with Childhood Apraxia of Speech. Communication Disorders Quarterly, 33(2), 96-110. DOI 10.1177/1525740110384131

Paradice, R., & Adewusi, A. (2002). ‘It’s a continuous fight isn’t it?’: Parents’ views of the educational provision for children with speech and language difficulties. Child Language Teaching and Therapy, 18(3), 257-288. Retrieved August 2, 2004, from the EBSCO databases.

Patterson, J. M. (2002). Understanding family resilience. Journal of Clinical Psychology, 53(3), 233-246. Retrieved September 22, 2009, from EBSCO databases.

Roll-Pettersson, L. (2001). Parents talk about how it feels to have a child with a cognitive disability. European Journal of Special Needs Education, 16, 1-14. Retrieved September 22, 2009, from EBSCO databases.

Singer, G. H. S. (2002). Suggestions for a pragmatic program of research on families and disability. Journal of Special Education, 36, 148-154. Retrieved September 22, 2009, from EBSCO databases.

Stainton, T., & Besser, H. (1998). The positive impact of children with an intellectual disability on the family [Electronic version]. Journal of Intellectual & Developmental Disability, 23(1), 56-69. Retrieved September 22, 2009, from EBSCO databases.

Turnbull III, H. R., Beegle, G., & Stowe, M. (2001). The core concepts of disability policy affecting families who have children with disabilities. Journal of Disability Policy Studies, 12, 133-143. Retrieved September 22, 2009, from EBSCO databases.

Wikler, L., Wasow, M., & Hatfield, E. (1983). Seeking strengths in families of developmentally disabled children. Social Work, 28(4), 313-315. Retrieved September 22, 2009, from EBSCO databases.

Working with Families and Caregivers

For many reasons, it is in the child’s best interest when SLPs are committed to working with and beside parents and caregivers. Creating professional-parent partnerships whenever possible enhances the opportunities for children with CAS. Parents can be valuable “therapy extenders”, with proper guidance from the SLP. It is not likely enough to simply spend a minute at the end of a therapy session verbally telling the parent what occurred. It is not likely enough to send home a homework sheet and think it is going to be helpful. As often as possible, parents should observe a significant portion of a speech therapy session so that they can receive direct instruction on how to elicit appropriate speech practice at home. Some therapy settings provide ample space and room for this to occur. For example, settings that have observation rooms with one-way mirror windows are a real bonus for providing parents with the opportunity to view therapy sessions. Creativity may be needed in other settings in which observation is not as simple. Some SLPs use video cameras to periodically record therapy sessions so the parent can view them. Minimally, some parents report taking baby monitors to the therapy room so they can at least hear the treatment session in progress.

While having oneself observed is not always comfortable, the real help it can provide to the family hopefully overrides any such discomfort. SLPs need to go beyond verbally reporting the help that parents can provide at home to also modeling it directly. It is through this modeling and direct guidance that parents will learn what their child is capable of producing independently or with cueing and that which the child is not yet capable.

As previously explained, the amount of practice will directly influence the child’s ability to achieve motor learning for speech. Without practice outside of the therapy room, many children will not receive the adequate degree of practice. Thus, if SLPs encounter parents who are not able or unwilling to learn how to practice with their child, a discussion of the ramification on long-term progress is certainly appropriate.

Many parents today try to educate themselves on problems affecting their children. Thus, SLPs will encounter parents who may have read more recent information on apraxia in children than the SLP has! It is important to understand that most parents are eager to engage with the SLP as partners in helping the child. It is perfectly fine to acknowledge when the SLP has not had much experience with apraxia; has an equal eagerness to learn about the disorder and its treatment; and express an overall willingness to include the parents as partners. Parents appreciate when the SLP can acknowledge that which they do not know and an expression of willingness to learn and seek training in order to help their child.

There may be times when the SLP is concerned that the parent is not, for whatever reason, following through consistently or providing appropriate support to the child at home. During such instances, a meeting without the child present and outside of scheduled therapy time may need to occur. It is important to sensitively and honestly share concerns for the child’s progress with the parent so that realistic understanding exists. The SLP may also need to provide referrals to other appropriate professional resources for specific children. For example, if the SLP suspects that the child has an underlying pervasive disability, disorder, or syndrome it would be important to refer the family to an appropriate developmental pediatrician or pediatric neurologist.

Overall, it is in the best interest of the child when the SLP is able to involve the parent or caregiver as a partner in the therapy process. All efforts should lead to that hopeful result. New resources to aide families are becoming available and can be used to help facilitate their investment in speech therapy for the child.

Giving The News: How to Talk to Parents About the Apraxia Diagnosis