Experiences of Parents Advocating for the “Complicated Child”: A Phenomenologically Oriented Descriptive Exploration
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This paper is a phenomenologically oriented descriptive study that analyzed the experiences of parents advocating for a complex child within the special education sector. More specifically the research examined parental experiences during the Individual Education Plan (IEP) and during the Individual Placement and Review Committee (IPRC) process. The research analyzed two data sets to answer two main questions: 1) What are the experiences of mothers advocating for a child with multiple diagnoses within the special education structure? 2) What strategies have mothers developed during these advocacy experiences to successful and/or unsuccessful outcomes? The research examined six schoolboard websites in Southern and Central Ontario, ostensibly committed to the inclusion of children requiring accommodations into regular classroom programming and to the engagement of the parents of these children in the development of the Individualized Education Plans (IEP) that make this inclusion possible. Strategies for analyzing these unobtrusive data sets were manifest and latent content analysis. These findings of my manifest content analysis include a) average of 10.6 clicks to find rights based information, b) average of 61.6 tabs and links to navigate through. Latent analysis revealed a) absence of recognizable representative image, b) difficulties for persons whose first language was not English, c) a challenging array of mixed signals, ambiguous messages and obstacles that misdirect and prevent access to information that parents desperately need to participate in the IEP process. The second data set included semi-structured interviews with four mothers, as well as the author’s own experiences, in which parents were asked three subsets of questions; how has their child’s experience of disability impacted their education, what have their experiences been during IEP/IPRC meetings, and how have parents perceived their interactions with educational staff. Through phenomenologically oriented transcript analysis, four major themes were found: abjection/separation, good daughter/bad daughter attributions, dismissal of parental knowledge and concern, and manufacturing. The research indicates that equal access to education for children experiencing disability is, in fact, not equal to their neurotypical peers, and only when a parent is knowledgeable in the IEP/IPRC process, and has figured out how to hold power within the school system, can a child with complex needs obtain reasonable access to accommodations and /or modifications and receive equal access to educational opportunities.