Addressing Trends and Developments in Secondary Education and Transition
March 2004 • Vol. 3, Issue 2
Supporting the Dynamic Development of Youth with Disabilities During Transition: A Guide for Families
By Kris Peterson
The 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 Families
Parents, 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
Transition 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:
Adolescents with chronic illness or disability experience the same developmental
transitions as their peers without disabilities, yet their illness or disability
places them at risk for certain psycho-social problems as they move into adulthood.
The risk is not solely in the medical complications of the illness or disability...rather
risk is more often related to the degree of fit between the adolescent and
his or her environment: family, school, peers, health care services, work,
and societal attitude. The fit can lead to optimal integration and development,
or it can result in isolation and low self-esteem (p.1).
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
The National 4-H Council has identified eight “Keys for Kids” based
on the work of Konopka (1973) and Pittman (1991):
- Security: Youth feel physically and emotionally
safe (“I feel safe.”)
- Belonging: Youth experience belonging and ownership
- Acceptance: Youth develop self-worth (“What
I say and do counts.”)
- Independence: Youth discover self (“I like
to try new things.”)
- Relationships: Youth develop quality relationships
with peers and adults (“I care about others.”)
- Values: Youth discuss conflicting values and form
their own (“I believe...”)
- Achievement: Youth feel the pride and accountability
that comes with mastery (“I can do it.”)
- Recognition: Youth expand their capacity to enjoy
life and know that success is possible (“I feel special.”)
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
Table 1. Information Parents and Families Need
Families, their teens with disabilities, and the professionals who support
them will benefit from information about normal adolescent development
and the parent/child relationship. Since transition planning supports
a person-centered, holistic approach to life planning, it is helpful to
examine the concept of "development" within the process. Highlights
from extensive research and literatures on adolescent development and
parent/child relationships include:
Three developmental stages (Rapp, 1998)
- Early adolescence (12-14): peer groups, emotional distance from parents,
rapid growth, interest in sex;
- Middle adolescence (14-17): self-discovery, performance orientation,
vital relationships; and
- Late adolescence (17-19): career focus, physical distance from parents,
Eight developmental tasks (Havighurst, 1972)
- Achieving new and more mature relations with age-mates of both sexes,
- Achieving a masculine or feminine social role,
- Accepting one’s physique and using the body effectively,
- Achieving emotional independence from parents and other adults,
- Preparing for marriage and family life,
- Preparing for an economic career,
- Acquiring a set of values and an ethical system as a guide for behavior,
- Desiring and achieving socially responsible behavior.
Core developmental tasks (Elliot & Feldman, 1990)
- Becoming emotionally and behaviorally autonomous,
- Dealing with emerging sexuality,
- Acquiring interpersonal skills for dealing with the opposite sex and
- Acquiring education and other experiences needed for adult work, and
- Resolving issues of identity and values.
|Internal and external developmental assets
(Search Institute, 2003)
Bonding to school
Reading for pleasure
Equality and social justice
Planning and decision making
Peaceful conflict resolution
Sense of purpose
Positive view of personal future
Positive family communication
Other adult relationships
Caring school climate
Parent involvement in schooling
Community that values youth
Service to others
Adult role models
Positive peer influence
Time at home
|Essential requirements for healthy adolescence (Carnegie
Council on Adolescent Development, 1995)
- Find a valued place in a constructive group;
- Form close, durable relationships;
- Feel a sense of personal self-worth;
- Know support systems and how to use them;
- Show constructive curiosity;
- Find ways of being useful to others;
- Acquire technical and analytical ability to participate in a global
- Believe in a promising future with real opportunities;
- Master social skills and conflict resolution habits;
- Cultivate problem-solving habits;
- Achieve a reliable basis for making informed choices;
- Become an ethical person;
- Learn responsible citizenship; and
- Respect diversity.
Ages and Stages, Similarities and Differences: When Your Child has Special
Children 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
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
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
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
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.
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to Quality Youth Development
America’s Promise: The Alliance for Youth
National Youth Development Information Center
U.S. Department of Health
and Human Services
Author Kris Peterson is with InterDependence, Inc. in St. Paul, Minnesota.
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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.
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