Conversations with Families of Children with Disabilities

Insights for Teacher Understanding

Victoria I. Puig, Susan L. Recchia

• Publisher: Routledge
• Year: 2020
• ISBN:
  9780429859854
• Edition: 1
• Topic: Education
• Subtopic: Education General

Conversations with Families of Children with Disabilities creates a space for diverse families of children with disabilities to share their stories with pre-service and in-service teachers. Specifically designed for professionals preparing to work with families of children with disabilities, this text invites the reader to listen in as families reflect on their personal journeys in conversation with the authors. This powerful book helps educators develop a deeper understanding of families and enhance their capacity for authentic partnerships.

1

Introduction

Conversations with Families offers a platform for families of children with disabilities to share their stories in their own words. Conceived as a supplemental text to be used in courses that focus on preparing professionals to work in partnership with families, this book invites the reader to listen in as families reflect on their personal journeys in conversation with the authors. In our role as liaisons between the families and developing professionals, we offer questions after each story to guide discussion.

Drawing on our shared experiences in the field as practitioners and teacher educators, we recognize that partnerships that value family strengths and resources are foundational for responsive teaching and learning. Throughout the interview process and the creation of the book, our stance toward families is one of support and acceptance, creating a safe space that invites authentic sharing and is open to hearing their stories as they are told. Our goal for this book is to bring greater awareness to the importance of listening to families and learning from their individual perspectives.

Background

Families of children with disabilities have historically been described using a “tragedy metaphor” (Maul & Singer, 2009, p. 155), in which negative outcomes and experiences were viewed as inevitable and normative for parents, siblings, and even extended family members. These assumptions guided research that focused on pathology, and positioned families as victims. Failing marriages, sibling anxieties, and extensive family stress were emphasized as expected responses to their challenges, without considering family strengths and resources as a catalyst for resilience. This focus on pathology and stress in families has also influenced professionals’ perspectives and guidelines for intervention. Parents have been labeled “in denial” when they are too hopeful for their children’s potential success or disagree with a professional’s assessment or recommendations, and professional protocols for intervention can inadvertently undermine families’ own strategies for teaching and caring for their children, calling into question their efficacy and commitment (Gallagher, Fialka, Rhodes, & Arceneaux, 2002; Goodley & Tregaskis, 2006).

Questioning the power and influence of this pathological perspective, some researchers have looked beyond this framework to uncover the strengths and resources that families bring to the challenges presented by disability (Maul & Singer, 2009; Puig, 2012). Looking through the lens of family resilience allows for greater understanding of families’ adaptability (Lee, Park, & Recchia, 2016; Patterson, 2002). Findings from studies that apply resiliency theory, a strengths-based approach, show that most families of children with disabilities are resilient in similar ways to other families (Singer, 2006). Components of resilience such as family connectedness and closeness, the ability to make meaning of their circumstances, and spiritual and personal growth through the process of being and growing together, contribute to family well-being and stability (Bayat, 2007).

Gallimore and his colleagues (Gallimore, Goldenberg, & Weisner, 1993; Gallimore, Weisner, Kaufman, & Bernheimer, 1989) developed a research paradigm using eco-cultural theory as a framework for studying everyday life in families of children with disabilities. They explored how families actively constructed their own eco-cultural niches, developing routines that made sense for them in response to adverse circumstances. Families in their studies proactively made accommodations for their children with disabilities, demonstrating their resourcefulness in creating greater family harmony using their own strategies.

Applying this theoretical frame, Maul and Singer (2009) discovered that families of children with disabilities were not only resourceful and creative in finding adaptations that worked for them, but also, contrary to the tragedy metaphor, they often worked together as a team to care for their children or siblings with disabilities. Although sometimes faced with unique challenges, these families took action to negotiate them. The strategies that families developed emerged from and reflected their values, beliefs, cultural understandings, determination, and resourcefulness. Interestingly, scholarly findings have also revealed that when family preferences and values are used to guide interventions, as opposed to applying more prescriptive, standardized methods, interventions are more likely to be sustained over time (Moes & Frea, 2000).

Despite growing social awareness about the rights of people with disabilities, families continue to be challenged by negative public perceptions and responses to disability in their communities (Goddard, Lehr, & Lapadat, 2000; Goodley & Tregaskis, 2006). Judgments from others and lack of support from professionals to help navigate community experiences have been viewed as key stressors for families, especially when their children’s disabilities include challenging behavior (Ludlow, Skelly, & Rohleder, 2012). Families have unique insights into their children’s preferences and interests, and are “the sole owners of knowledge about their own family systems” (Dunlap & Fox, 2007, p. 276). Listening to families with an openness to thinking together about intervention strategies that fit the context of their lives can guide professionals to work more effectively to meet children’s and families’ needs.

Working with families has been a topic of considerable research and is an integral element of teacher education and professional development. However, many current publications such as traditional text books and collections of case studies are presented from a professional perspective. This book is unique in that it features a collection of diverse families’ lived experiences shared in their own voices, and positions family stories at its heart. The authors’ ongoing relationships with the families foster less formal and more candid conversations that transcend the constraints of traditional professional protocols. As liaisons, we draw on our professional expertise as well as our pre-existing relationships with the families to access their unique strengths and perspectives, and make connections between their experiences and professional practices and guidelines.

What Brought us to this Project?

We come to this project with a deep respect for children with disabilities and their families. Our experiences as special education teachers in various contexts inform our beliefs about the critical importance of understanding families’ perspectives as a component of making meaningful connections with children that lead to optimal educational outcomes (Bayat, 2007). We have learned that every family has a story, and through telling their stories, they share the essence of who they are and what matters most to them (Goddard et al., 2000).

Through our work as teacher educators, we have witnessed the ways that students and teachers alike can lose sight of family perspectives in their eagerness to meet their own expectations for children or those of a standardized protocol (Prezant & Marshak, 2006). This has fueled our desire to make families’ stories accessible to teacher educators and their students (Blue-Banning, Summers, Frankland, Nelson, & Beegle, 2004), as the beauty of family strength and resilience is often lost in prescriptive understandings of families’ experiences and institutional needs (Goodley & Tregaskis, 2006; Maul & Singer, 2009). Learning about what families see as helpful supports for their own lives and the lives of their loved ones can help practitioners to look beyond a one-size-fits-all set of recommended intervention strategies and to challenge existing assumptions about what is considered “best practice” (Prezant & Marshak, 2006).

Our Interview Process

Various aspects of our work have brought us into contact with families of children with disabilities. In our more current roles as teacher educators, both authors have been affiliated with university-based inclusive child care centers and have invited parents and family members to be guest speakers in our courses. Through these practices, we have had the opportunity to get to know families over time. In conceptualizing Conversations with Families, our goal was to invite a diverse cross-section of families as participants, and to engage them in the process of telling their own unique stories. We were interested in learning more about their experiences as a family, as well as their thoughts and feelings about their interactions with professionals.

Participants were given the option to provide pseudonyms for each family member unless, like some, they preferred to use their own names. They were also given the opportunity to review transcripts and completed chapters. In order to maintain a sense of continuity throughout the story chapters, we designed a series of open-ended questions that were used flexibly to guide our conversations.

The interview protocol consisted of five overarching questions/invitations:

1. Tell me about your family.
2. Tell me about your child.
3. Tell me about your child/ren’s educational experiences.
4. Tell me about your family’s daily life and community experiences.
5. What advice do you see as most helpful to others?

Within each of these categories were sub-questions which were used as needed to expand or clarify responses. The full interview protocol can be found in the Appendix.

We each invited individual families that we had worked with previously to participate. In most cases, an initial e-mail was sent to the family with a very brief description of the book project and a request regarding their interest. Once interest in the project was confirmed, a more detailed description of what would be involved was shared. Interviews were scheduled in accordance with family preferences for time and place. Our conversations took place in an academic office, at the family’s home, or in a local café, depending on what worked best for the families. Some conversations took place with just one parent, while others included whole families. During our time together, the interview protocol was used as a guide to support families to share their stories in their own words. Interviews were audio recorded and later transcribed. A copy of the transcript was shared with the family to check for accuracy, and to allow them to make any additions or deletions.

Descriptions of the Families

In our quest to represent a range of family structures, styles, and roles, we invited six families to participate. The children ranged in age from 4 to 16 years, and their disabilities included autism, Usher Syndrome, cerebral palsy, and schizencephaly, a rare neurological disorder. Families represent multiple ethnicities, cultures, and social classes. Each family and each conversation is unique. The children’s needs and levels of independence also vary greatly, so that taken together, the family stories give access to a wide range of complexities involved across and within different disabilities.

Because we had previous relationships with our participating families, our interview conversations often touched on our shared history. Knowing more about what took place for the children and families in the years preceding these interviews brought a richer context to the discussions and allowed the conversations to flow more easily. In some cases, the interview transcripts were enhanced by information from other sources, described within the context of the chapters.

Essence of the Stories

After each family conversation was recorded and transcribed, we engaged in the process of crafting the family’s story. Influenced by the work of Lawrence-Lightfoot and Davis (1997), we attempted to compose each story through a lens of “goodness” (Lawrence-Lightfoot, 2016, p. 20), focusing on family strengths in light of their lived realities. Although the conversations were framed in part by the interview questions, each took on a life of its own in process. In transforming the interview transcripts into families’ stories, we worked to preserve their wholeness and integrity, weaving their words throughout. Although greatly informed by the conversations, the chapters were written by the authors, who ultimately influenced the way each story is shared with the reader.

Each family conversation is contained within its own chapter. We chose to present each family’s story as a whole, without the interruption of scholarly interpretation or confirmation. Instead, we provide a set of questions for the reader at the end of each chapter along with relevant connections to the literature in the first and final chapters of the book.

Brief Description of the Chapters to Follow

Following this introductory chapter, six family story chapters each feature a conversation between one of the authors and a family. These exchanges are guided by families’ unique experiences and priorities and their beliefs about what they would like professionals to know and understand about working with children with disabilities and their families. The interview questions and sub-questions encouraged them to identify their families’ strengths, consider particular experiences and decisions that have shaped their children’s and families’ lives, and express their hopes for the future. More specific descriptions for each chapter’s content are offered below.

Chapter 2: A Mother and Grandmother Come Together as Caregivers

In this chapter, we meet a mother and grandmother of an adolescent with multiple disabilities as they reconnect with one of the authors. Together they reflect on a conversation that was inspired by an assignment completed when the mother was the author’s student in a class on building partnerships with families of children with disabilities. In telling their story, they trace their experiences, reflect on their feelings, and discuss their shared roles as caregivers.

Chapter 3: A Mother Learns to Advocate for a Preschooler with Complex Needs

This chapter reconnects one of the authors with the mother of a young child, labeled on the autism spectrum, who has transitioned from an inclusive child care setting to a self-contained special education classroom. The conversation uncovers the complexities of understanding her child’s needs and...