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The teen years are characterized by rapid physical and emotional changes. It is a time of developing your own identity and finding where disability fits into the whole picture. This period is marked by increased attention to body image, sexuality, and acceptance. You will probably face many physical and emotional conflicts in the transition to adulthood. It is a time to think about the things you are good at and focus on your strengths. It is a time to think about the things you like to do and focus on your interests. It is a time to think about your experiences like the things you have done with friends, around the house, at an internship or a job. It is a time to dream about now and the future, make plans, and have goals.
You can begin planning for your own success. It is important for you to take an active role in planning for your future. While it may be difficult for parents to let you assume responsibility and control, it is important for your future. As a person with a disability, you are more likely to be successful as an adult if you have experience making your own decisions and choices.
It is important to learn and practice self-advocacy skills. By practicing, you can become comfortable about being an effective advocate. Being a good self-advocate means that you know your rights, stand up for your rights, take responsibility for your life, and ask for help because you want or need it. By becoming a good self-advocate, you will become more independent and more able to manage your disability. This does not mean that you have to do everything alone as everyone depends on other people at different times for different reasons.
Engaging in conversation about current interests and concerns about function of orthopedic or prosthetic devices may bring to light modifications that can be made to decrease self-consciousness or accommodate needs such as sports participation. Awareness of options and ability to participate in decision-making is important.
For teens with a chronic illness or a disability, adolescence is a time of development and challenge. Adolescence is a unique developmental time characterized by emerging independence, rapid cognitive and physical growth, and the development of an identity. Teens become concerned about physical appearance. Peer relationships and acceptance develop special significance. Chronic illness and disability may impose physical limitations and require repeat medical visits and complex medical treatments. Overemphasis on disability and lack of information may lead you to underestimate current and future personal, vocational, and economic capabilities.
Youth with disabilities face the same issues as all youth. You will experience both rewards and challenges as you pursue full participation in social activities, relationships, college, employment, and living on your own. You will have your experience with disability as you develop your interests and goals. As you develop your interests and goals, they will be the same as or similar as non-disabled teenagers.
A disability may affect you in many ways by:
Each young person has a unique set of challenges ahead, decisions to make, and choices to choose from during the teenage years and beyond. During the teenage years, it is time to start thinking ahead about the choices you will have to make for planning the next steps you will take. You will probably be thinking about the following questions:
What
Parents Can Do
A parent's role in a teen's adjustment to his or her disability
is critical. In addition to the health and medical care a parent
can help provide, there are important efforts parents can make to
incorporate disability into the family to ensure your child's adjustment
to their disability. These efforts can go a long way in helping
a teenager and their parents meet the challenges of a disability
or illness.
Balance
Parents need to help teens adapt to their disability. This means
recognizing the limitations a disability may impose. It also means
continuing with life as usual, whenever possible.
Family
Relationships
A disability can cause stress to family members because of additional
demands placed on the family. Family members need to maintain a
commitment to all family members. As in all families, keeping communication
open is helpful. Spend time together that is not focused on the
disability. Siblings often feel overlooked when a brother's or sister's
needs demand so much family time.
Coping
Parents can help teens learn new ways to cope with the challenges
of a disability. This may be difficult if the family has not had
experience with disability in the past. Discussing with a teen their
experience with disability, coping with the everyday experience
of disability, how disability affects him or her, and finding solutions
to problems can be helpful. Teens can participate in activities,
build on their strengths, and develop pride in their ability to
meet challenges.
Peer
Relationships
Oftentimes, disability interferes with routines and activities.
For teens, a particularly devastating consequence can be the weakening
or loss of friendships. Friends can grow apart as a result of these
changes. Encouraging teens to keep involved with their peers and
making extra effort to maintain connections can go a long way in
helping a teen cope with a disability. Helping teens to find ways
to make and maintain relationships is critical.
Hopefulness
Looking for the positive in situations and keeping optimistic are
important. This does not mean negative feelings should be ignored.
Concerns and worries should be recognized. All possible positive
outcomes need to be considered.
Personal
Care Assistance
Families may be the primary caregivers for teenagers who need personal
care assistance with routine daily care. Families may use assistance
from outside sources such as friends, neighbors or personal care
assistants hired by the individual with a disability or by the family.
For long-range planning, it is helpful for a teenager to participate
as much as possible in the process of finding, identifying, hiring,
and training a personal care assistant in order to gradually learn
the skills that are necessary to later manage a disability as an
adult.
When to Seek Help
Coping with the challenges of a disability can be a difficult challenge
for anyone. For a teen, the more their disability interferes with
school, friends, and activities, the more difficult the adjustment
to the disability may be. The challenges may or may not require
professional help. Some teens will find support and guidance important
at this time even if their usual network of family and friends is
supportive. It may be useful to seek the advice and counsel of a
peer with a disability or a mental health professional. If the problem
is disability based, a professional with experience in the field
of disability is useful and important. Professionals need to be
concerned about a teens concern for privacy, confidentiality and
independence. Professionals can support teens' coping, development,
and health. Teens who appear depressed or who show other signs of
depression may benefit from professional help.
Adolescent
Employment Readiness Center (AERC)
The Adolescent Employment Readiness Center (AERC) is a national
program that helps adolescents with chronic illnesses or physical
disabilities ages 12 through 21 to obtain the skills required for
successful employment. Services include career counseling, interest
and abilities testing, employment counseling, transition planning,
advocacy training, educational assessment, job seeking skills training,
and parent counseling and training.
Adolescent
Employment Readiness Center
111 Michigan Avenue
Washington, DC 20010, NW
202-884-3203
Next
Steps: The Guide to Future Planning
This electronic guide by the Parent Educational Advocacy Training
Center (PEATC) for students with disabilities and their families,
educators, and service providers identifies the steps a student
needs to take to plan for adult life. It includes information about
transition planning, self-advocacy, job training and placement,
assistance in getting housing, and programs on health care and independent
living.
The
Parent Educational Advocacy Training Center
6320 Augusta Drive, Springfield, VA 22150
703-923-0010
http://www.peatc.org/NEXT_STEPS/rsahome.htm
After
16
After 16 is a website for teenagers with a disability and their
parents. The website presents information on services and major
issues that teenagers with disabilities face and aims to prepare
teens to be responsible adults with discussions about your future,
money, learning choices, work, housing, transportation, leisure,
friends, health, laws and more.
http://www.after16.org.uk
Kriegsman, K. H. Taking Charge: Teenagers Talk about Life and Physical Disabilities. Woodbine House, 1992. US.
This book provides
advice and creative solutions for a wide range of issues that teenagers
who confront illness and/or a physical disability face during adolescence.
The book covers three major areas of concern: self-esteem, relationships,
and dealing with the future. It is available on Amazon.com
