Ola Nā Iwi Oʻu I Kuʻu Wahi Keiki: A Story of Personal Evolution Through Caring for a Child with Multiple Disabilities
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2022
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University of Hawaii at Manoa
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Ola Nā Iwi Oʻu I Kuʻu Wahi Keiki: A Story of Personal Evolution Through Caring for a Child with Multiple Disabilities details a unique perspective not common in research about caregiving. Usually, research shares how parent caregivers have shaped the lives of their children with multiple disabilities. My study flips that perspective, documents my caregiving journey, and examines how providing care for my son has shaped my personality, my outlook on life, my relationships, and my achievements. This autoethnographic study examines my perspectives and positionality as a Hawaiian and Māori researcher with maternal, spiritual, and educational responsibilities. I use storytelling as documented in my journal writings, songs, letters, poems, videos, and self-interview to analyze my evolution as a parent caregiver. My autoethnographic study seeks to answer the following questions: • What have been my aspirations for my son’s health and well-being as his parent caregiver and how have these aspirations shaped my decisions regarding his life, his spiritual well-being, and his education? • How have I evolved through the process of caring for my son? What has been the nature of this evolution, and how has my practice of personal reflection been an essential part of my journey with him? • How might my practice of personal reflection inform other parents of children with multiple disabilities as they seek to navigate their journeys? In developing these questions, I was inspired by the sentiment contained in the ʻōlelo noʻeau, “kihe ka ihu i ka ʻale. One who sneezes when the spray from the surf rises at the bow of the canoe” (Pukui, 1983, p. 192).
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Caregivers--Conduct of life, Children with disabilities--Care
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Hawaii
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