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Information BriefAddressing Trends and Developments in Secondary Education and TransitionMarch 2004 • Vol. 3, Issue 2 Supporting the Dynamic Development of Youth with Disabilities During Transition: A Guide for FamiliesBy Kris Peterson IntroductionThe physical and emotional changes in adolescence are comparable in complexity to the developmental phases of infancy and early childhood. The level of knowledge and skills needed by young adults in order for them to thrive in their communities is increasing. At the same time, youth may experience decreasing structure and support in their lives as they seek to build the skills necessary for success (Simpson, 2001; Larson, Brown, & Mortimer, 2002). Family support is key to healthy adolescence. A family enables children to experience attachment, belonging, competence, and self-esteem, and at the same time allows them to experience success and failure, adventure and retreat, independence and interdependence. For families who have teens with disabilities, adolescence can be especially challenging. This brief provides information about healthy adolescent development for youth with disabilities, focusing on the role of parents and families in supporting the successful transition to adult life. The Predicament of Parents and FamiliesParents, whose roles include providing for and protecting their children, often find themselves at odds with the teen who wants to experience life, develop individual values, and achieve independence (Tempke, 1994). When a child is vulnerable, families may view control as a responsibility to ensure safety. Families may have extensive fear of how the world will treat their child, or they may hesitate to give up their primary role as protector and advocate. In spite of this, teens with disabilities want and need to experience and obtain the same things that all adolescents want and need no matter how significant their disability. ChallengesTransition assessment and planning occur during adolescence, yet often in the search for academic and career development the vital elements of psychological, social, emotional, and sexual development may be overlooked. Gerber and Okinow (1994) assert that the environment is crucial for these youth:
LoConto and Dodder (1997) asked people with developmental disabilities, “If you could wish for anything, what would it be?” The majority response was that they wanted the same things that all people want: material goods, a home of their own, emotional and intimate connections, vacations and leisure, and a way to feel useful. So often the focus for youth and adults with disabilities is safety and physical health at the expense of a valued social role and the need for human connections. The parent/child relationship is strongly related to adolescent well-being. Parents’ vision for the future of their children is that they will grow up, move away, and develop lives of their own (Hanley-Maxwell, 1995). Having a child with a disability, however, may seriously threaten this vision. Although families may be able to adapt, build resilience, and develop greater emotional growth and togetherness as a result of the disability, they may also experience an on-going stress as they move through the life cycles of their own development and that of their child (DeMarie & LeRoux, 2002). Some families cope with the stress by dealing with the present moment and not thinking about the future of a child with a disability. They may have experienced many disability-focused assessments and programs, resulting in little vision of independence or quality of life for their child. Most families also experience a loss and undergo a grieving process when they have a child who is born with, or acquires, a disability (Seligman & Darling, 1997). No matter what the disability, families find themselves in “uncharted emotional territory with no guides to direct them toward ways to express their grief in a culturally acceptable format” (DeMarie & LeRoux, 2002). For some families, the chronic care needs of a child with a disability can be overwhelming and never-ending. For those who have a child with a disability, pivotal milestones such as graduation from high school can trigger stress, grief, or fears that impede a vision of normal adulthood. In addition, the social effects of a disability also impact the parent/child relationship and family dynamics. Families may respond by becoming strong advocates or by defending and fighting for supports and services. This role can become part of their core identity and may be difficult to relinquish when the time comes to transfer advocacy responsibilities to the teen with a disability. Meeting the Challenges: What Can Families Do?It is important for teens with disabilities and their families to have information from physicians, teachers, social workers, and other families about adolescent development, and to receive encouragement to create a vision of adulthood (see Table 1). It is also vital that they experience opportunities to share their dreams and hopes, fears and frustrations, and to dialog about their visions for the future. Autonomy, independence, problem-solving, and constructive role-related changes will increase if families can build safety nets amid the fear of life-threatening decisions and risk-taking that are part of the teen experience. The National 4-H Council has identified eight “Keys for Kids” based on the work of Konopka (1973) and Pittman (1991):
Adolescent development is more than high academic expectations, career development, and independence. Families play a pivotal role in supporting teens to explore their identities and make connections with peers and other adults. Understanding all aspects of adolescent development helps families of youth with disabilities and those who work with them to address these critical issues and improve adult outcomes.
Ages and Stages, Similarities and Differences: When Your Child has Special NeedsChildren don’t come with a user’s manual, and more often than not, parenthood often seems like a land with no clear roadmap....There is increasing separateness while the connection is held onto, and parents must figure out the right amount of involvement in their child’s everyday life. The parent is more and more aware of the child’s individuality. Interpreting the world also involves setting standards for behavior in the world outside the home. As difficult questions come up, parents are impelled to re-examine and perhaps revise their own theories of childrearing and parenthood. Over a period of several years images of the future are formed. If there are developmental challenges, this process can be much more involved. A child with special needs will have an Individual Educational Program (IEP); may be in special classes; and may have complex medical issues, engage in numerous therapies, and need medications. Cognitive development may be slower and more difficult. The road will have more twists and turns, and the emotional terrain may be even more difficult to handle. With the teen years, there is the onset of the Interdependent Stage, which can be extremely turbulent as teenagers challenge parents’ authority. Emotional highs and lows are not far apart. Strong feelings are stirred up in parents. As their [youths’] bodies change with the dawn of their emerging sexuality, parents have to think about their authority relationship with their almost adult child. Because teenagers are by developmental necessity absorbed in themselves, they can be disrespectful, testing, worrisome, and upsetting to their parents. Parents must learn to talk less and leave the door open because their children still need them but on new terms. Limit-setting and guidance are still needed but must be based on the particular child’s needs. More than ever parents must understand the deep passions that are evoked in this stage. Particularly challenging is accepting their child as a sexual being. As the separate identity is formed, separation brings feelings of envy, fear, anger, pride, and regret. Parents of children with special needs confront the reality of how far their child may be different from the norm once again, and may have special fears about their child being taken advantage of in the world. Overall, this further redefinition of the parent-child relationship brings to all parents the image of life without children at home which now looms on the near horizon. The Departure Stage is something parents have thought about ever since their eyes first met those of their newborn. Now parents are faced with taking stock of the whole experience of parenthood. They redefine their identity as parents with grown-up children. The parents of children with special needs face the possibility that their children can never live independently and may live with them for the rest of their lives or in a community living arrangement with supports. But for all parents, it is clearer than ever that our job is never done for we are parents the rest of our lives, but our roles with our adult children are different. At this point, parent and child alike waving good-bye to childhood and looking out to adulthood, with wobbly knees, I might add, from my own experience with my 22-year-old son with autism. We don’t know yet what the future holds for living and working. It’s a scary thought when your child is young. How do we get there? This may be far from what we imagined before our child, whether typical or not, was born. Nonetheless, through acceptance and courage and endurance, the road through parenthood brings peace and love. Our special children truly light the way and help us find the inner strength and wisdom we need. From Ages and stages, similarities and differences: When your child has special needs, part 2, by R. Naseef, 2003, http://www.specialfamilies.com/ages_and_stages_2.htm. Copyright 2003 by Robert Naseef. Adapted with permission. ReferencesAlmquist, P., Brekke, B., Croymans, S.R., Fruechte, K., Matlack, M., McAndrews, B., et al. (1999). Keys to quality youth development. Retrieved February 2, 2004, from http://www.extension.umn.edu/distribution/youthdevelopment/DA6715.html Blum, R., & Mann Rinehart, P. (1997). Reducing the risk: Connections that make a difference in the lives of youth. Minneapolis: University of Minnesota. Carnegie Council on Adolescent Development. (1995). Great transitions: Preparing adolescents for a new century. New York: Carnegie Corporation, Task Force on Youth Development and Community Programs. DeMarie, D., & LeRoux, P. (2002). The life cycle and disability: Experiences of discontinuity in child and family development. Retrieved July 28, 2003 from http://www.discoveryifi.org Elliott, G., & Feldman, S. (1990). At the threshold, the developing adolescent. Cambridge, MA: Harvard University Press. Gerber, G., & Okinow, N. (1994). Reconsidering a generation of youth, research, and knowledge. Connections: The Newsletter of the National Center for Youth with Disabilities, 4(4), 1. Havighurst, R. (1972). Developmental tasks and education (3rd ed.). New York: David McKay. Hanley-Maxwell, C., Whitney-Thomas, J., & Pogoloff, S. (1995). The second shock: A qualitative study of parents’ perspectives and needs during their child’s transition from school to adult life. Journal of the Association for Persons with Severe Handicaps, 20, 3-15. Konopka, G. (1973). Requirements for the healthy development of adolescent youth. Adolescence, 8(31), 2-25. Larson, R., Brown, B., & Mortimer, J. (2002). Adolescents’ preparation for the future: Perils and promise. The Journal of Research on Adolescence, 12(1). LoConto, D., & Dodder, R. (1997). The right to be human: Deinstitutionalization and the wishes of people with developmental disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 32(2), 77-84. Naseef, R. (2003). Ages and stages, similarities and differences: When your child has special needs, part 2. Retrieved January 4, 2005, from http://www.specialfamilies.com/ages_and_stages_2.htm Pittman, K. (1991). Promoting youth development: Strengthening the role of youth serving and community organizations. Washington, DC: Academy for Educational Development, Center for Youth Development and Policy Research. Rapp, M. (1998). Adolescent development: An emotional roller coaster. In M.A. Nichols & C.A. Nichols (Eds.), Young adults and public libraries (pp. 1-10). Westport, CT: Greenwood. Search Institute. (2003). Forty developmental assets. Retrieved July 28, 2003, from http://www.search-institute.org/assets/40Assets.pdf Seligman, M., & Darling, R. (1997). Ordinary families, special children: A system approach to childhood disability (2nd ed.). New York: Guilford. Simpson, A.R. (2001). Raising teens: A synthesis of research and a foundation for action. Boston: Harvard University, School of Public Health, Center for Health Communication. Tempke, M. (1994). Living with your teenager: Understanding the changing parent-teen relationship. Durham: University of New Hampshire, Cooperative Extension. Further ReadingFerber, T., Pittman, K., & Marshall, T. (2002). State youth policy: Helping all youth to grow up fully prepared and fully engaged. Takoma Park, MD: The Forum for Youth Investment (http://www.forumforyouthinvestment.org). Yohalem, N., & Pittman, K. (2001). Powerful pathways: Framing options and opportunities for vulnerable youth. Discussion paper of the Youth Transition Funders Group. Takoma Park, MD: The Forum for Youth Investment (http://www.forumforyouthinvestment.org). Brendtro, L., Brokenleg, M., & Van Bockern, S. (1990). Reclaiming youth at risk. Bloomington, IL: National Education Service. Resources Search Institute Keys
to Quality Youth Development America’s Promise: The Alliance for Youth National Youth Development Information Center U.S. Department of Health
and Human Services
There are no copyright restrictions on this document. However, please cite and credit the source when copying all or part of this material. This report was supported in whole or in part by the U.S. Department of Education, Office of Special Education Programs, (Cooperative Agreement No. H326J000005). The opinions expressed herein do not necessarily reflect the policy or position of the U.S. Department of Education, Office of Special Education Programs, and no official endorsement by the Department should be inferred. This publication is available in an alternate format upon request. To request an alternate format or additional copies, contact NCSET at 612.624.2097. |
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