The joyful experiences of mothers of children with special needs : an autoethnographic study
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Abstract
The purpose of this study was to examine the joyful lived experiences of mothers of children with special needs (CSN). Mothers, who are most identified as the primary caregivers of children with special needs, are subject to marginalization because of the societal perspective that having a disability is wrong and that care giving for a child with a disability is dominated by challenge or burden. This study gave voice to mothers of children with special needs so the joys of being a mother of a CSN can be better known and understood by medical, educational, and social service practitioners. The findings resulted in a reflective transformative adult learning model that practitioners can integrate into their discourse with mothers of a CSN. The qualitative research method autoethnography was used to reveal the mothers’ joyful experiences. Both internal and external data were collected from five mothers who were purposively sampled from a support group that is located in suburban Indianapolis, Indiana and from the researcher, also a mother to a child with special needs. External data in the form of transcribed interviews including personal writings of the mothers and internal data in the form of reflexive researcher field notes and personal writings were subject to analysis using the constant comparison method. The findings revealed that mothers of a CSN do experience challenges, but they have learned to find joy through the unique strengths of themselves and their children. They have discovered a purpose and have been transformed by their children. As a result of that transformation, they recognize that their children’s joy is their joy and that joy is defined as the “simple things” they and their children engage in. These simple and unique joys, however, require planning and collaboration. The researcher called those practitioners in the medical, educational, and social service communities to use the reflective practice of writing as a way to better understand how important joy is for mothers of a CSN so practitioners can transform their treatments, education, and services to include joy.