Educators in many Western nations have used the Kübler-Ross stage model of grief for five decades as a lens to explain parental response to disability. A recent article in Improving Schools, representing this deficit model, asserted that the grief lens is useful in understanding parent’s response to learning that their child qualified for special education services. Implicit assumptions in such a perspective unintentionally undermine parent–educator relations. This article describes that phenomenon and notes an emerging ‘transformational’, empowering model of parental response to disability based on a social-ecological conceptualization of disability. Educators’ intent on improving 21st century schools must confront belief perseverance regarding the grief lens and adopt a more empowering strength-based approach in order to effectively engage parents of students with disabilities in strong collaboration relationships.
AbbottD.MeredithW. (1986). Strengths of parents with retarded children. Family Relations, 35, 371–375.
2.
AffleckG.AllenD.McGradeB. J.McQueeneyM. (1982). Home environments of developmentally disturbed infants as a function of parent and child characteristics. American Journal of Mental Deficiency, 86, 445–452.
3.
AffleckG.TennenH. (1993). Cognitive adaptation to adversity: Insights from parents of medically fragile infants. In TurnbullA. P.PattersonJ. M.BehrS. K.MurphyD. L.MarquisJ. G.Blue-BanningM. J. (Eds.), Cognitive coping, families, and disability (pp. 135–150). Baltimore, MD: Paul H. Brookes.
4.
AllredK. W.HancockC. (2012). On death and disability: Reframing educators’ perceptions of parental response to disability. E-Disability Studies Quarterly, 32(4). Retrieved from http://dsq-sds.org/.
5.
AnotovskyA. (1993). The implications of salutogenesis: An outsider’s view. In TurnbullA. P.PattersonJ. M.BehrS. K.MurphyD. L.MarquisJ. G.Blue-BanningM. J. (Eds.), Cognitive coping, families, and disability (pp.111–1122). Baltimore, MD: Paul H. Brookes.
6.
BlacherJ. (1984). Sequential stages of parental adjustment to the birth of a child with handicaps: Fact or artifact?Mental Retardation, 22, 55–68.
7.
Blue-BanningM.SummersJ. A.FranklandH. C.NelsonL. L.BeegleG. (2004). Dimensions of family and professional partnerships: Constructive guidelines for collaboration. Exceptional Children, 70, 167–184.
8.
BonannoG. A. (2009). The other side of sadness: What the new science of bereavement tells us about life after loss. New York, NY: Basic Books.
9.
BoweF. G. (2007). Early childhood special education: Birth to eight (4th ed.). Clifton Park, NY: Thomson.
10.
BoydD. (1951). The three stages of growth in the parent of a mentally retarded child. American Journal of Mental Deficiency, 55, 608–611.
11.
BuntinxW. E. (2013). Understanding disability: A strength-based approach. In WehmeyerM. L. (Ed.), The oxford handbook of positive psychology and disability (pp. 7–18). Oxford, UK: Oxford University Press.
12.
DonaldsonS. O.ElderJ. H.SelfE. S.ChristieM. B. (2011). Fathers’ perceptions of their role during in-home training for children with Autism. Journal of Child and Adolescent Psychiatric Nursing, 24, 200–207.
13.
Family Involvement Network of Educators (FINE). (2012). Family engagement and children with disabilities: A resource guide for educators and parents. Boston, MA: Harvard Family Research Project.
14.
FergusonD. L.FergusonP. M.KimJ.LiC. (2013). Family portraits: Past and present representations of parents in special education text books. International Journal of Inclusive Education, 17, 1326–1341.
15.
FergusonP. M. (2002). A place in the family: An historical interpretation of research on parental reactions to having a child with a disability. Journal of Special Education, 36, 124–130, 147.
16.
FergusonP. M.FergusonD. L. (2006). Finding the ‘proper attitude’: The potential of disability studies to reframe family/school linkages. In DanforthS.GabelS. L. (Eds.), Vital questions facing disability studies in education: Disability studies in education (Vol. 2, pp. 217–235). New York, NY: Peter Lang.
17.
FishW. W. (2006). Perceptions of parents of students with autism towards the IEP meeting: A case study of one family support group chapter. Education, 127, 56–68.
18.
HaleyM.HammondH.IngallsL.MarinM. R. (2013). Parental reactions to the special education individual education program process: Looking through the lens of grief. Improving Schools, 16, 232–243.
19.
HammondH.IngallsL.TrussellR. (2008). Family members’ involvement in the initial IEP meeting and the IEP process: Perceptions and reaction. International Journal about Parent Education, 2, 35–48.
20.
HendersonA. T.MappK. L.JohnsonV. R.DaviesD. (2007). Beyond the bake sale: The essential guide to family–school partnerships. New York, NY: The New Press.
21.
KearneyP. M.GriffinT. (2001). Between joy and sorrow: Being a parent of a child with a developmental disability. Journal of Advanced Nursing, 34, 582–592.
22.
KingG. (2003). ‘Best approaches’ in pediatric rehabilitation: Intervention principles for service providers (Focus on . . ., Vol. 3, Issue 3). London, Ontario, Canada: Research Alliance for Children with Special Needs.
23.
KleinB. L. (1984). Families of handicapped children: A personal account. In HennigerM. L.NesselroadE. M. (Eds.), Working with parents of handicapped children: A book of readings for school personnel (pp. 73–81). Lanham, MD: University Press of America.
24.
KnightJ. A. (2010). When close enough doesn’t cut it: Why courts should want to steer clear of determining what is – and what is not – material in a child’s individual education program. University of Toledo Law Review, 41, 375–409.
25.
Kübler-RossE. (1969). On death and dying: What the dying have to teach doctors, nurses, clergy and their own families. New York, NY: Routledge.
26.
Miller-MarshM.Turner-VorbeckT. (2010). Introduction. In Miller-MarshM.Turner-VorbeckT. (Eds.), (Mis)Understanding families: Learning from real families in our school (pp. 1–3). New York, NY: Teachers College Press.
27.
NaidooP. (2006). Potential contributions to disability theorizing and research from positive psychology. Disability and Rehabilitation, 28, 595–602.
28.
NickersonR. S. (1998). Confirmation bias: A ubiquitous phenomenon in many guises. Review of General Psychology, 2, 175–220.
29.
NotaL.SoresiS.FerraraiL.WilgoshL.ScorgieK. (2005). Life management and quality of life in parents of children with diverse disabilities. Developmental Disabilities Bulletin, 31, 155–181.
30.
OlshanskyS. (1962). Chronic sorrow: A response to having a mentally defective child. Social Casework, 43, 190–193.
31.
PearsallP. (2003). The Beethoven factor: The new positive psychology of hardiness, happiness, healing, and hope. Charlottesville, VA: Hampton Roads.
32.
PowersL. E. (1995). Family and consumer parent activism in disability policy. In SingerG. H. S.PowersL. E.OlsonA. (Eds.), Redefining family support: Innovations in public-private partnerships (pp. 413–434). Baltimore, MD: Paul H. Brookes.
33.
Roll-PetterssonL. (2001). Parents talk about how it feels to have a child with a cognitive disability. European Journal of Special Needs Education, 16, 1–14.
34.
ScorgieK.SobseyD. (2000). Transformational outcomes associated with parenting children who have disabilities. Mental Retardation, 38, 195–206. doi:10.1352/0047-6765
35.
ScorgieK.WilgoshL.McDonaldL. (1999). Transforming partnerships: Parent life management issues when a child has mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 34, 396–405.
36.
ScorgieK.WilgoshL.SobseyD. (2004). The experience of transformation in parents of children with disabilities: Theoretical considerations. Developmental Disabilities Bulletin, 32, 84–110.
37.
SeligmanM. E. P.CsikszentmihalyiM. (2000). Positive psychology: An introduction. American Psychologist, 55, 5–14. doi:10.1037//0003-066X.55.1.5
38.
SnowK. (2001). Disability is natural: Revolutionary common sense for raising successful children with disabilities. Woodland Park, CO: Braveheart Press.
39.
SolnitA. J.StarkM. H. (1961). Mourning and the birth of a defective child. Psychoanalytic Study of the Child, 16, 523–537.
40.
StaintonT.BesserH. (1998). The positive impact of children with an intellectual disability on the family. Journal of Intellectual and Developmental Disability, 23, 57–70.
41.
SummersJ. A.BehrS. K.TurnbullA. P. (1989). Positive adaptation and coping strengths of families who have children with disabilities. In SingerG. H. S.IrvinL. K. (Eds.), Support for caregiving families: Enabling positive adaptation to disability (pp. 27–40). Baltimore, MD: Paul H. Brookes.
42.
TaylorS. E. (1983). Adjustment to threatening life events: A theory of cognitive adaptation. American Psychologist, 38, 1161–1173.
43.
TaylorS. E.BrownJ. D. (1988). Illusion and well-being: A social psychological perspective on mental health. Psychological Bulletin, 110, 193–210.
44.
TaylorS. E.KemenyM. E.ReedG. M.BowerJ. E.GruenewaldT. L. (2000). Psychological resources, positive illusions, and health. American Psychologist, 55, 99–109.
45.
TurnbullA.PattersonJ. M.BehrS.MurphyD.MarquisJ.Blue-BanningM. (1993). Cognitive coping, families, and disability. Baltimore, MD: Paul H. Brookes.
46.
TurnbullA. P.TurnbullH. R. (1978). Parents speak out: Views from the other side of the two-way mirror. Columbus, OH: Charles E. Merrill Publishing Co.
47.
TurnbullA. P.TurnbullH. R. (1997). Families, professionals, and exceptionality. Columbus, OH: Merrill.
48.
TurnbullA.TurnbullR.ErwinE.SoodakL. K. (2006). Families, professionals, and exceptionality (5th ed.). Upper Saddle River, NJ: Pearson.
49.
UlrichM. E.BauerA. M. (2003). Levels of awareness: A closer look at communication between parents and professionals. Teaching Exceptional Children, 35, 20–24.
50.
ValliantG. E. (2000). Adaptive mental mechanisms: Their role in a positive psychology. American Psychologist, 55, 89–98. doi:10.1037//0003-066X.55.1.89
51.
WalshF. (2003). Family resilience: A framework for clinical practice. Family Process, 42(1), 1–18.
52.
WehmeyerM. L. (2013). Beyond pathology: Positive psychology and disability. In WehmeyerM. L. (Ed.), The Oxford handbook of positive psychology and disability (pp. 3–6). Oxford, UK: Oxford University Press.
53.
WeinerB. (1986). An attributional theory of motivation and emotion. New York, NY: Springer-Verlag.
