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Ordinary or Not? Families of Children Growing Up with Disabilities

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Childhood and Disability in the Nordic Countries

Part of the book series: Studies in Childhood and Youth ((SCY))

Abstract

Nearly all disabled children in the Nordic countries grow up with their families — their parents and siblings. And like all other children, the lives of disabled children are strongly interwoven with those of their families. The purpose of this chapter is to address disability and childhood from a family perspective. The chapter’s approach differs, however, from the main bulk of research on families with disabled children. This research has been described as moving from a focus on crisis, stress and mental health challenges to an exploration of coping, variation and resilience (Ferguson, 2002; Lundeby, 2008; Seligman, 1999). The main body of research in the field is nevertheless on parental mental reactions with a psychological profile. This chapter will, instead, address the impact of disability on more sociological aspects of family life.

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References

  • Askheim, O. P., Andersen, T., & Eriksen, J. (Eds.) (2004). Sosiale tjenester for familier som har barn med funksjonsnedsettelser [Social services for families with disabled children]. Oslo: Gyldendal Akademisk.

    Google Scholar 

  • Bengtsson, S., Hansen, H., & Røgeskov, M. (2011). Børn med en funktionsnedsættelse og deres familier [Children with disabilities and their families]. Copenhagen: Danish National Centre for Social Research, Report 11:09.

    Google Scholar 

  • Ellingsæter, A. L. (2004). Familie, arbeidsmarked og politikk [Family, labour market and politics]. Søkelys på arbeidsmarkedet, 21, 197–203.

    Google Scholar 

  • Felce, D., Grant, G., Todd, S., Ramcharan, P., Beyer, S., McGrath, M., et al. (1998). Towards a full life: Innovation for people with learning disabilities. Oxford: Butterworth Heinemann.

    Google Scholar 

  • Ferguson, P. M. (2002). A place in the family: An historical interpretation of research on parental reactions to having a child with disability. The Journal of Special Education, 36, 124–30.

    Article  Google Scholar 

  • Grant, G., Nolan, M., & Keady, J. (2003). Supporting families over the life course: Mapping temporality. Journal of Intellectual Disability Research, 47, 342–51.

    Article  Google Scholar 

  • Grant, G., & Ramcharan, P. (2001). Views and experiences of people with intellectual disabilities and their families (2) The family perspective. Journal of Applied Research in Intellectual Disabilities, 14, 364–80.

    Article  Google Scholar 

  • Hatton, C., Emerson, E., Graham, H., Balcher, J., & Llewellyn, G. (2010). Changes in family composition and marital status in families with a young child with cognitive delay. Journal of Applied Research in Intellectual Disabilities, 23, 14–26.

    Article  Google Scholar 

  • Haugen, G. M., Hedlund, M., & Wendelborg, C. (2012). Detgår ikke ån å bruke seg sjøl både på retta og vranga [You cannot be use yourself on both sides]. Trondheim: NTNU Social Research.

    Google Scholar 

  • Hodapp, R. M., & Krasner, D. V. (1995). Families of children with disabilities: Findings from a national sample of eighth-grade students. Exceptionality, 5(2), 71–81.

    Article  Google Scholar 

  • Lundeby, H. (2006). Hva med jobben? Om yrkesaktivitet blant foreldre til barn med nedsatt funksjonsevne [What about work? Employment among parents of children with impairments]. In J. Tøssebro, & B. Ytterhus (Eds.), Funksjonshemmete barn i skole og familie [Disabled children in school and family] (pp. 209–43). Oslo: Gyldendal Akademisk.

    Google Scholar 

  • Lundeby, H. (2008). Foreldre med funksjonshemmete barn [Parents with disabled children]. Trondheim: NTNU, Doctoral theses series 2008: 283.

    Google Scholar 

  • Lundeby, H., & Tøssebro, J. (2006).‘Det er jo milepæler hele tiden’: Om familien og ‘det offentlige’ [‘There are milestones all the time’: Family and ‘the public’]. In J. Tøssebro, & B. Ytterhus (Eds.), Funksjonshemmete barn i skole og familie [Disabled children in school and family] (pp. 244–79). Oslo: Gyldendal Akademisk.

    Google Scholar 

  • Lundeby, H., & Tøssebro, J. (2008). Family structure in Norwegian families with children with disabilities. Journal of Applied Research in Intellectual Disabilities, 21, 246–56.

    Article  Google Scholar 

  • Lundeby, H., & Tøssebro, J. (2009). Livsløp i familier med funksjonshemmete barn [Life course in families with disabled children]. In J. Tøssebro (Ed.), Funksjonshemming — politikk, hverdagsliv og arbeidsliv [Disability — policy, everyday life and employment] (pp. 149–64). Oslo: Universitetsforlaget.

    Google Scholar 

  • Mauldon, J. (1992). Children’s risk of experiencing divorce and remarriage: Do disabled children destabilize marriage? Population Studies, 2, 349–62.

    Article  Google Scholar 

  • Midré, G. (1990). Bot, bedring eller brød? Om bedømming og behandling av sosial nød fra reformasjonen til velferdsstaten [On the attitudes and treatment of social need from the reformation to the welfare state]. Oslo: NAVF/Universitetsforlaget.

    Google Scholar 

  • Ministry of Labour and Social Affairs, Norway (2005). Strategiplan for familier med barn med nedsatt funksjonsevne [Action plan for families with disabled children]. Oslo: Author.

    Google Scholar 

  • Norwegian Board on Health Supervision (2007). Ikkje likeverdige habiliteringstenester til barn [Not equal rehabilitation services for children]. Oslo: Author.

    Google Scholar 

  • OECD (2009). OECD Employment outlook2009. Paris: Author.

    Google Scholar 

  • Olsen, B. C. R. (2001). Med barnet i hverdagen: Omsorgserfaringer til foreldre til barn med cerebral parese [Caring experiences of parents with children with cerebral palsy]. Oslo: HiO, report 2001: 4.

    Google Scholar 

  • Porterfield, S. (2002). Work choices for mothers in families with children with disabilities. Journal of Marriage and Family, 64, 972–81.

    Article  Google Scholar 

  • Read, J. (2000). Disability, the family and society: Listening to mothers. Buckingham and Philadelphia: Open University Press.

    Google Scholar 

  • Risdal, D., & Singer, G. H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research & Practice for Persons with Severe Disabilities, 2, 95–103.

    Article  Google Scholar 

  • Seligman, M. (1999). Childhood disability and the family. In V. L. Schwean, & D. H. Saklofoske (Eds.), Handbook of psychosocial characteristics of exceptional children (pp. 111–31). New York: Kluwer Academic/Plenum.

    Chapter  Google Scholar 

  • Seltzer, M. M., Greenberg, J. S., Floyd, F. J., Pettee, Y., & Hong, J. (2001). Life course impacts of parenting a child with a disability. American Journal on Mental Retardation, 3, 265–86.

    Article  Google Scholar 

  • Shearn, J., & Todd, S. (2000). Maternal employment and family responsibilities: The perspectives of mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 13, 109–31.

    Article  Google Scholar 

  • Thommesen, H. (2006). Individuell plan [Individual plan]. In O. P. Askheim, T. Andersen, & J. Eriksen (Eds.), Sosiale tjenester for familier som har barn med funksjonsnedsettelser [Social services for families with disabled children] (pp. 129–45). Oslo: Gyldendal Akademisk.

    Google Scholar 

  • Todd, S., & Jones, S. (2003). ‘Mum’s the word!’: Maternal accounts of dealings with the professional world. Journal of Applied Research in Intellectual Disabilities, 16, 229–44.

    Article  Google Scholar 

  • Tøssebro, J., & Lundeby, H. (2002). Å vokse opp med funksjonshemming — de første årene [Growing up with disability — the first years]. Oslo: Gyldendal Akademisk.

    Google Scholar 

  • Urbano, R., & Hodapp, R. (2007). Divorce in families of children with Down syndrome. American Journal of Mental Retardation, 112, 261–74.

    Article  Google Scholar 

  • Wendelborg, C. (2010). Barrierer mot deltakelse [Barriers to participation]. Trondheim: NTNU Social Research.

    Google Scholar 

  • Wendelborg, C., & Tressebro, J. (2011). Educational arrangements and social participation with peers amongst children with disabilities in regular schools. International Journal of Inclusive Education, 15, 497–512.

    Article  Google Scholar 

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© 2015 Jan Tøssebro and Christian Wendelborg

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Tøssebro, J., Wendelborg, C. (2015). Ordinary or Not? Families of Children Growing Up with Disabilities. In: Traustadóttir, R., Ytterhus, B., Egilson, S.T., Berg, B. (eds) Childhood and Disability in the Nordic Countries. Studies in Childhood and Youth. Palgrave Macmillan, London. https://doi.org/10.1057/9781137032645_13

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