engleski

Unique Privilege of Choice Making in Meeting Needs of Families With Children with Multiple Disabilities

Unique Privilege of Choice Making in Meeting Needs of Families With Children with Multiple Disabilities Ljiljana Pintarić Mlinar Universiy of Zagreb, Faculty of Education and Rehabilitation Sciences Summary The nature as we know, or at least as each of us perceives it, comes sometimes in amazing features, beautiful or scary mountains, clouds, sea, rivers and animals. Sometimes, also, it has pretty scary systems of strict rules under which it functions in order to protect its ancient internal structure or organization. When it comes to human species, a significant outstanding tool understood to belong to perfectionism of our species (comparing to other living beings on Earth), is CHOICE. Namely, we, humans, have an additional value when it comes to choices and that is, we can reach our goals or meet our needs respecting other individuals' needs. And what is even more important, exactly this privilege makes our needs' met in a way to make them much more fulfilling, makes ourselves getting much more satisfaction when sharing ancient need for belonging in a mutual need's respect. Almost all disciplines and research provides with proof / evidence for this statement. Their findings could be easily applied to development of support provided for families with children with severe and profound disabilities. Sameroff (2009), for example, enriched our understanding of transactional phenomenon interpreting „Rough History of Nature - Nurture” relationship development. He listed four requirements for a „Unified Theory of Development“: Personal Change Model, Contextual Model, Regulation Model and Representational Model. The goal of this paper is presenting a selection of experiences in work with families through development of university affiliated program - an initiative of University of Zagreb, Faculty of Rehabilitation and Education Sciences, its Centre for rehabilitation, its decades long history of interaction (streamed to become collaboration) with parents' associations, rehabilitation and education institutions all over Croatia and of course, governmental and local stakeholders. The presentation will be elaborated through analysis of sixteen years of meetings with four families (mothers most intensively) of boys with severe developmental disabilities. Through their stories we will outline hopefully some „personal change model“ characteristics, but also opportunities for inclusive education and its requirements since two of the boys are fully included in mainstream education and two attend special education facilities. Sharing this experience is streaming to support the thesis on human privilege to make CHOICES which unify nature and nurture, thus incorporating individual perception of their needs satisfaction in societal policies which presumes high standard in human rights respect.

choices, work with families of children with severe disabilities, collaboration and transasctional phenomenon

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