Parent views on the educational experience of students with Fetal alcohol spectrum disorders: Advocacy, Inclusion, and collaboration

Advancing equity and inclusion in educational opportunities for children with disabilities is crucial across societies. For children with Fetal alcohol spectrum disorders (FASDs) who are at-risk for a variety of social-emotional, behavioral and learning challenges, educational systems play a key role in implementing inclusive services to support learning and development. This study aims to share the perspectives and experiences of parents of children with FASDs as they experienced the education system. Using phenomenological approach, two focus groups were conducted with nine parents of children with FASD and one young adult with FASD. Using Interpretative Phenomenological Analysis (IPA), three cross-cutting themes were identified: (a) emotional burden of parents, (b) parental advocacy, and (c) concerns about student discipline, and four sub-themes: (a) navigation, coordination, and collaboration; (b) diagnosis and early intervention; (c) developmental continuum; and (d) community, connectedness, and belonging. Enhancing family-school partnerships, targeted educational supports, and inclusive practices for children with FASDs can enhance feelings of connectedness and a sense of belonging for both children and families. School-based teams are encouraged challenge their thinking of inclusive practices beyond legal requirements and advocate for practices that embody building a systems perspective which values family voice as a central tenant of change.