Abstract
Parents often are not well educated about what having a child with special needs means. Although a special needs or disability diagnosis may occur at any age, this chapter addresses the initial experiences when a special needs diagnosis occurs prenatally or at birth, coinciding with the transition to parenting. Through several case examples, this chapter highlights the challenges and opportunities associated parenting children with special needs. The chapter concludes with a section describing the need of providing new parents with accurate information regarding their child’s diagnosis, connecting them with effective resources and sources of support, and encouraging the development of a positive perspective are important in navigating this transition. Parents need to be reassured that the grief and loss they feel is normal, but the new path they are on can have positive outcomes.
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References
American College of Obstetricians and Gynecologists (ACOG). (2007, January). ACOG’s screening guidelines on chromosomal abnormalities: What they mean to patients and physicians. [Internet News Release]. Obtained 11/16/12 from: http://www.acog.org/About%20ACOG/News%20Room/News%20Releases/2007/ACOGs%20Screening%20Guidelines%20on%20Chromosomal%20Abnormalities.aspx.
Asberg, K. K., Vogel, J. J., & Bowers, C. A. (2007). Exploring correlates and predictors of stress in parents of children who are deaf: Implications of perceived social support and mode of communication. Journal of Child and Family Studies, 17, 486–499. doi:10.1007/s10826-007-9169-7.
Bentley, G. E. (2011). The up side of Down syndrome and fathering: An exploration of hope, satisfaction, and coping. (Doctoral dissertation). Texas Tech University, Lubbock, TX.
Berthelsen, D., & Joosa, E. (2006). Parenting a child with Down syndrome: A phenomenographic study. Journal of Developmental Disabilities, 12(1), 1–14.
Boss, P. (1993). Boundary ambiguity: A block to cognitive coping. In A. Turnbull, J. Patterson, S. Behr, D. Murphy, J. Marquis, & M. Blue-Banning (Eds.), Cognitive coping, families, and disability. Baltimore, MD: Brooks.
Boss, P. (1999). Ambiguous loss: Learning to live with unresolved grief. Cambridge, MA: Harvard Press.
Boss, P. (2002). Ambiguous loss: Working with families of the missing. Family Process, 41, 14–17.
Boss, P. (2004). Ambiguous loss research, theory, and practice: Reflections after 9/11. Journal of Marriage and the Family, 66, 551–566.
Boss, P. (2006). Loss, trauma, and resilience: Therapeutic work with ambiguous loss. New York, NY: W.W. Norton.
Boss, P. (2007). Ambiguous loss theory: Challenges for scholars and practitioners. Family Relations, 56(2), 105–111.
Brotherson, S. E., & Dollahite, D. C. (1997). Generative ingenuity in fatherwork with young children with special needs. In A. J. Hawkins & D. C. Dollahite (Eds.), Generative fathering: Beyond deficit perspectives. Thousand Oaks, CA: Sage.
Carr, J. (1988). Six weeks to twenty-one years old: A longitudinal study of children with Down’s [sic] syndrome and their families. Journal of Child Psychology and Psychiatry, 29(4), 407–431.
Crnic, K., Pedersen y Arbona, A., Baker, B., & Blacher, J. (2009). Mothers and fathers together: Contrasts in parenting across preschool to early school age in children with developmental delays. International Review of Research in Mental Retardation, 37, 3–30. doi:10.1016/S0074-7750(09)37001-9.
Cunningham, C. (1996). Families of children with Down syndrome. Down Syndrome Research & Practice, 4(3), 87–95. doi:10.3104/perspectives.66.
Cuskelly, M., Hauser-Cram, P., & Van Riper, M. (2009). Families of children with Down syndrome: What we know and what we need to know. Down Syndrome: Research & Practice, 12(3), 202–210. doi:10.3104/reviews/2079.
Data Accountability Center. (2011). Population and enrollment data. Retrieved from https://www.ideadata.org/PopulationData.asp#2011.
Flaherty, E., & Masters Glidden, L. (2000). Positive adjustment in parents rearing children with Down syndrome. Early Education and Development, 11(4), 407–422. doi:10.1007/978-1-4614-7768-6_3.
Folkman, S., & Lazarus, R. (1988). Coping as a mediator of emotion. Journal of Personality and Social Psychology, 54(3), 466–475.
Glidden, L. M., Billings, F. J., & Jobe, B. M. (2006). Personality, coping style and well-being of parents rearing children with developmental disabilities. Journal of Intellectual Disability Research, 50(12), 949–962. doi:10.1111/j.1365-2788.2006.00929.x.
Grant, G., Ramcharan, P., & Flynn, M. (2007). Resilience in families with children and adult members with intellectual disabilities: Tracing elements of a psycho-social model. Journal of Applied Research in Intellectual Disabilities, 2007(20), 563–575. doi:10.1111/j.1468-3148.2007.00407.x.
Hodapp, R. M. (2007). Families of persons with Down syndrome: New perspectives, findings, and research and service needs. Mental Retardation and Developmental Disabilities Research Reviews, 13(3), 279–287. doi:10.1002/mrdd.20160.
Hornby, G. (1994). Effects of children with disabilities on fathers: A review and analysis of the literature. International Journal of Disability, Development and Education, 41(3), 171–184.
Huebner, A. J., Mancini, J. A., Wilcox, R. M., Grass, S. R., & Grass, G. A. (2007). Parental deployment and youth in military families: Exploring uncertainty and ambiguous loss. Family Relations, 56(2), 112–122.
King, G., Baxter, D., Rosenbaum, P., Zwaigenbaum, L., & Bates, A. (2009). Belief systems of families of children with autism spectrum disorders or Down syndrome. Focus on Autism and Other Developmental Disabilities, 24(1), 50–64. doi:10.1177/1088357608329173.
Lawson, K. L., & Walls-Ingram, S. A. (2010). Selective abortion for Down syndrome: The relation between the quality of intergroup contact, parenting expectations, and willingness to terminate. Journal of Applied Social Psychology, 40(3), 554–578.
Markman, H. J., Renick, M. J., Floyd, F. J., Stanley, S. M., & Clements, M. (1993). Preventing marital distress through communication and conflict management training: A 4- and 5-year follow-up. Journal of Consulting and Clinical Psychology, 61, 70–77.
McCubbin, H. I., & Thompson, A. I. (Eds.). (1991). Family assessment inventories for research and practice. Madison, WI: University of Wisconsin.
Minnes, P., Graffi, S., Nolte, M. L., Carlson, P., & Harrick, L. (2000). Coping and stress in Canadian family caregivers of persons with traumatic brain injuries. Brain Injury, 14(8), 737–748.
Nelson Goff, B. S., Springer, N., Foote, L. C., Frantz, C., Peak, M., Tracy, C., Veh, T., Bentley, G. E., & Cross, K. A. (in press). Receiving the initial Down syndrome diagnosis: A comparison of prenatal and postnatal parent group experiences. Intellectual and Developmental Disabilities.
O’Brien, M. (2007). Ambiguous loss in families of children with autism spectrum disorders. Family Relations, 56(2), 135–146.
Olshansky, S. (1962). Chronic sorrow a response to having a mentally defective child. Social Casework, 43, 190–193.
Poehlmann, J., Clements, M., Abbeduto, L., & Farsad, V. (2005). Family experiences associated with a child’s diagnosis of Fragile X or Down syndrome: Evidence for disruption and resilience. Mental Retardation, 43(4), 255–267. doi:10.1352/0047-6765.
Risdal, D., & Singer, G. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research & Practice for Persons with Severe Disabilities, 29(2), 95–103. doi:10.2511/rpsd.29.2.95.
Sanders, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for intervention. Child & Family Behavior Therapy, 19(4), 15–32. doi:10.1007/978-1-4614-7768-6_2.
Schaffer, H. R. (2006). Key concepts in developmental psychology. London: Sage.
Skotko, B. (2005). Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics, 115, 64–77. doi:10.1542/peds.2004-0928.
Springer, N., Nelson Goff, B., McCallum, S., & Pounds, M. (2011, January). What your doctor may not tell you when Down syndrome enters your life. Workshop presentation at the Family Therapy Symposium, Lubbock, TX.
Springer, N., & Nelson Goff, B. S. (2011, March). Resilience and hope: Embracing life with Down syndrome. Poster presented at the Texas Association for Marriage and Family Therapy, Austin, TX.
Stanley, S. M., Allen, E. S., Markman, H. J., Saiz, C. C., Bloomstrom, G., Thomas, R., et al. (2005). Dissemination and evaluation of marriage education in the army. Family Process, 44(2), 187–201.
Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioner, 19, 251–260. doi:10.1111/j.1745-7599.2007.00222.x.
Urbano, R. C., & Hodapp, R. M. (2007). Divorce in families of children with Down syndrome: A population-based study. American Journal on Mental Retardation, 112(4), 261–274.
Van Hooste, A., & Maes, B. (2003). Family factors in the early development of children with Down syndrome. Journal of Early Intervention, 25(4), 296–309. doi:10.1177/105381510302500405.
Van Riper, M. (2007). Families of children with Down syndrome: Responding to ‘a change in plans’ with resilience. Journal of Pediatric Nursing, 22(2), 116–128. doi:10.1016/j.pedn.2006.07.004.
Weber, J. G. (2011). Individual and family stress and crises. Thousand Oaks, CA: Sage.
Wolfensberger, W., & Menolascino, F. A. (1970). Theoretical framework for management of parents of the mentally retarded. In F. Menolascino (Ed.), Psychiatric approaches to the mentally retarded. New York: Basic Books.
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Nazarinia Roy, R., Schumm, W.R., Britt, S.L. (2014). Children with Special Needs by Briana S. Nelson Goff, Nicole Springer, and Gail E. Bentley. In: Transition to Parenthood. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-7768-6_9
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DOI: https://doi.org/10.1007/978-1-4614-7768-6_9
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