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The development of inclusive education, characterised by both universal momentum and geopolitical differences, has largely omitted children and young people with profound intellectual and multiple disabilities. For this group, access to educational opportunities at all has been slow to be won, and separation for ‘special care’ for their very high support needs is the norm. There have been advances in recognising the human rights and indeed humanity of people with the most profound intellectual disabilities, but the focus of educationalists has often been on how to foster and document fine-grained learning gains and on the specialist nature of the teaching they need. In this chapter, in contrast, the emphasis is on how the spirit of ‘Nothing about us without us’ can extend to children and young people with profound intellectual disabilities such that they are at the heart rather than periphery of the education and research process. The potential for belonging in education and research is illustrated through exploratory work on doing research inclusively with children with profound intellectual and multiple disabilities in two English special school classes. The starting point is seeking to know them from being with them in a particular way. The knowledge shared in the chapter is a mix of big picture state of the art overview and deep intersubjective knowledge/feeling created together with children with profound intellectual and multiple disabilities. The implications for future research in inclusion include the need to start from a different mindset in which belonging and reciprocity inform an asset-based approach.

Parents of children with intellectual and developmental disabilities are frequently given news that is difficult to hear and can be very traumatic. Whether receiving an initial diagnosis for their baby or learning about guardianship options for their adult child, emotional reactions almost always occur, especially because of the interdependent relationship they have with their child. These emotions likely impact the meaning parents give to information and decisions they make for their children throughout their lives. Medical, education, and other support providers sometimes assume parents can objectively receive information that frequently is communicated in a technical and clinical way. They may not give parents the time to emotionally process what they have learned, limiting their ability to care for their child. This chapter presents the results from a series of focus groups with 21 parents of children with intellectual and developmental disabilities of varying ages. The participants discussed their emotional reactions to information communicated to them about medical, educational and social concerns related to their children. In addition, they discussed how emotions impacted their information processing and sensemaking as they gave meaning to what they learned. Analysis of the results identified eight emotion-based information processing and sensemaking themes that are described in detail. The discussion section provides an enhanced explanation for emotion's role in parental information processing and sensemaking. In addition, recommendations for providers communicating emotional information to parents are provided.