04 SES 01 C, Parents’ Views I
Parallel Paper Session
We know from a decade or more of research that family members play significant roles in the education of children and youth (Henderson, & Mapp, 2002). We have also long known that family members of children, youth, and adults with disabilities have critical roles in the education and lives of their sons and daughters that is codified in many national education laws. Certainly there are such laws in the US, but families also have specific rights and roles in the UK, and a range of other countries (Bjarnason, 2004; 2010), though these certainly vary in implementation.
As parents of a son, now 42, with multiple disabilities, including intellectual disabilities, we came to these issues early (Ferguson & Ferguson, 1987; Ferguson, P., 2002) and engaged in research to understand professional perspectives about parents. This led, as we approached our own landmarks with our son, to further research with family members to understand what they had experienced in order to prepare ourselves.
The first study (Ferguson, Ferguson, & Jones, 1988) focused on how families of two different generations – those completing school prior to US federal legislation requiring schooling for disabled children and the generation that was facing school ending after that legislation. Using a framework of topical life histories to explore families’ experience of this event, we sought to provide a “thick understanding” (Ferguson, D., 2009) of families’ experiences with the transition event.
The second study (Ferguson, Ferguson, Jeanchild, Olson, & Lucyshyn, 1993) further explored the status of adulthood for young adults with disabilities. If it is the responsibility of professional and family members to launch individuals with significant disabilities into adult roles, we must understand the range with which success in adulthood is defined and the struggle to control whose definition becomes the operative one.
The third study built upon thee studies to present a theoretical framework for understanding the “promise of adulthood” for adults with significant intellectual and multiple disabilities which was first published in 1993 and has been republished 4 times (Ferguson & Ferguson, 1993; Ferguson & Ferguson, 2011). With each revision, we added more analysis and in the latest version we added additional data from long personal and professional experiences with one other family.
The final study enlarged our focus on professionals and families with disabled children to explore the relationships between schools and all families (Ferguson & Galindo, 2008). While family involvement in the education of their children is important, schools struggle to get a representative number of families to come to meetings and events or engage school-initiated activities. Research identifies a variety of things that explain this struggle including culture (e.g., Gutman & McLoyd, 2000; Lewis and Forman, 2002; Rao, 2000); socioeconomic levels, differences in social capital and family structure (e.g., Banks & McGee, 2001; , 1999; & Harris, 2000). Of course, many of these same dimensions also apply to families with a disabled child (e.g., Harry, Kalyanpur & Day; Turnbull & Summers, 1987).
Abrams, L.S. & Gibbs, J.T. (2002). Disrupting the logic of home-school relations: Parent involvement strategies and practices of inclusion and exclusion. Urban Education, 37 (93), 384 -407. Ferguson, D.L. (2009). Honoring and celebrating diversity in educational research. Special Issue. Educare, 4 9-18. Bjarnason, D. (2004). Disability and young adulthood. New Voices from Iceland. New York: Love Publishing. Ferguson, P. M. (2002). Mapping the Family: Disability studies and the exploration of parental response to disability. In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies (pp. 373- 395). Thousand Oaks, CA: Sage Publications. Ferguson, P.M. & Ferguson, D.L. (1987). Parents and professionals. In P. Knoblock (Ed.), Introduction to special education (pp. 346-391). Boston: Little, Brown. Ferguson, P. M., & Ferguson, D. L. (1993). The promise of adulthood. In M. Snell (Ed.), Instruction of students with severe disabilities, (4th ed., pp. 588-607). Columbus, OH: Charles Merrill. Ferguson, D.L., & Ferguson, P.M. (2011). The promise of adulthood. In M. Snell & F. Brown (Eds.) Instruction of students with severe disabilities, 7th Edition. (pp. 612-641). Columbus, OH: Charles Merrill. Ferguson, P. M., Ferguson, D. L., & Jones, D. (1987). Generations of hope: Parental perspectives on the transitions of their severely retarded children from school to adult life. Journal of the Association for Severe Handicaps, 13 (3), 177 – 187. Ferguson, P. M., Ferguson, D. L., Jeanchild, L., Olson, D., & Lucyshyn, J. (1993). Angles of influence: Relationships among families, professionals, and adults with severe disabilities. Journal of Vocational Rehabilitation, 3(2), 14-22. Ferguson, D.L. & Galindo, R. (2008). Improving family/school linkages through inquiry and action: Reports from sixteen schools in two states. The New Hampshire Journal of Education, XI, 66 – 75. Lewis, A.E. & Forman, T.A. (2002). Contestation or collaboration? A comparative study of home-school relations. Anthropology & Education Quarterly, 33(1), 60-89. Penman, R. (1980). Communication process and relationship. London: Academic Press.
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