Parent Experiences of Raising a Young Child with Multiple Disabilities: The Transition to Preschool

Abstract

Families raising young children diagnosed with multiple disabilities encounter experiences that are often unique and extend well beyond the early childhood years due to the intensity and severity of their child's needs. The contexts of these families must be understood to provide meaningful services and supports, particularly during the child's transition from early intervention to preschool services. In this transcendental phenomenological inquiry, 10 parents of young children with multiple disabilities who transitioned from early intervention into preschool services participated in a brief survey and a semistructured interview. Findings highlight two thematic categories experienced by participants: (a) the transition from early intervention to preschool services, and (b) the importance of social contexts. Implications emphasizing effective partnerships with families, teacher preparation program enrichment, and development of accessible community supports are discussed.

Ecological Systems for Students Who Use AAC: Stakeholders’ Views on Factors Impacting Intervention and Outcomes

“…Findings revealed that many factors across interacting systems act as facilitators or barriers to successful intervention implementation and outcomes for students with complex communication needs. The factors stakeholders discussed were largely consistent with prior knowledge of ecological systems (Bronfenbrenner, 1979), expanding existing research to strengthen understanding about how students with complex communication needs function within a set of nested systems (Lindsay et al, 2015;Mandak et al, 2017;Odom et al, 2004;Waters & Friesen, 2019). The factors and interactions across ecological systems can have rippling and important impacts both on AAC implementation and on outcomes more broadly for this group of students.…”

“…For example, Odom et al (2004) used a conceptual framework based on ecological systems to review research on the inclusion of young children with disabilities, discussing factors such as teacher attitudes, classroom practices, and classroom quality (microsystem); family-school interactions (mesosystem); policies and administrative issues (exosystem); and the broader culture (macrosystem). Waters and Friesen (2019) used an ecological perspective to explore the experiences of families of young children with multiple disabilities transitioning into preschool services. Their findings provided insight into the importance of broader systems of support for families (e.g., familial supports, other parents of children with disabilities).…”

Residential immersive life skills programs for youth with disabilities: Experiences of parents and shifts in parenting approaches

“…The priority of their youth's high health and medical needs made it challenging to adjust their parenting to encourage greater opportunities for youth to develop their life skills. Changes in the interaction and development of family members (family functioning), in addition to changes in the emotional bonding among family members (family cohesion), can prove to be complex and challenging for families with a disabled youth (Kingsnorth et al, 2019; Olson et al, 1979; Waters & Friesen, 2019). In particular, the multiple healthcare and community services a young person may require can also add to the impact on family functioning and cohesion (Olson et al, 1979; Waters & Friesen, 2019).…”

“…Changes in the interaction and development of family members (family functioning), in addition to changes in the emotional bonding among family members (family cohesion), can prove to be complex and challenging for families with a disabled youth (Kingsnorth et al, 2019; Olson et al, 1979; Waters & Friesen, 2019). In particular, the multiple healthcare and community services a young person may require can also add to the impact on family functioning and cohesion (Olson et al, 1979; Waters & Friesen, 2019). We posit that when parents adjusted their parenting, it did in fact create opportunities for youth to develop their life skills further.…”

“…Parents can, therefore, be the most important and enduring resource in a youth's life (Devlieger, Galarza, Brown, & Strickfaden, 2018; Schor, 2003). During the transition from adolescence to adulthood, parents of youth with disabilities may feel overwhelmed by having to explore additional health and related services for their youth such as independent living, transportation, further education and employment (Waters & Friesen, 2019). Youth and their parents may; therefore, experience a range of psychosocial challenges and changes (Mattson & Kuo, 2019).…”