Teenage years and stress from physical and emotional changes

tour special needs family

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, teenage stress 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:

Complicating the development of independence
Interfering with a connection to peers
Introducing a new set of emotional conflicts during an already emotionally charged time
Adding teenage stress with relationships due to limited social activities or increased need for support
Imposing physical changes and limitations
Affecting self-esteem and self-concept.
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 will you do when you leave school?
What information will you need?
What opportunities and support are there in your area to do what you want to do?
How will you get the help you need and from whom?
What is the kind of help you would accept – you do not have to accept help if you do not need it or it is not what you want?
What help might be out there in the future?
Who will be involved in the decision-making? Make sure you are at the center of the planning and decision-making?

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.

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.

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 of teenage stress.

Peer Relationships
Often, 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.

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.

Online Resouces

Encourage Online
Encourage Online provides support to youth with chronic illness and/or disabilities. It is an Internet forum for youth to share their experiences living with a chronic illness in individual and group settings. Online support makes help available to all teens and young adults with an illness or disability. It reaches youth that are not mobile because of their illness. It provides an important diversion for youth and reaches youth who find it difficult to make connections with other youth with illness. Teens benefit from listening to the experiences of others and are able to receive advice, counsel, and direction from their peers who understand what they are experiencing.

The Adolescent Employment Readiness Center (AERC) is a national program that helps teens 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. The Adolescent Employment Readiness Center (AERC) offers a variety of nationally unique services which 1) begin at 12 years of age, which is significantly earlier than other programs providing similar services; 2) target a population not identified by other systems; 3) are developmentally and diagnostically appropriate and aimed at improving the adolescent's job readiness/career exploration skills; and 4) bring together the business, medical, education, parent and disability communities to facilitate the adolescents’ success.

These services include:

Adolescent Services
Parent Services
Transition Planning
Education, Training and Technical Assistance
Educational Programs
Biannual Teen Newsletter

Since 1984, the AERC has served more than 2000 adolescents, ages 12 to 26 years old, with chronic illnesses and disabilities, and their parents. Groups served include:

Cardiovascular Disease
Cerebral Palsy
Cystic Fibrosis
Cleft Palate
Renal Disease
complex partial seizure disorders
Sickle Cell
Liver Disease
Spina Bifida
Rheumatic Diseases
Orthopedic Conditions
Learning Disabilities

The Parent Educational Advocacy Training Center 6320 Augusta Drive, Springfield, VA 22150 (703) 923-0010

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.


Kriegsman, K. H. Taking Charge: Teenagers Talk about Life and Physical Disabilities. 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, teenage stress and dealing with the future.

The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs by Donald Meyer. Give teenagers a chance to say what's on their minds, and you might be surprised by what you hear. That's exactly what Don Meyer, creator of Sibshops and author of Views from our Shoes did when he invited together a group of 80 teenagers, from all over the United States and abroad, to talk about what it's like to have a brother or sister with special needs.

Their unedited words are found in The Sibling Slam Book, a brutally honest look at the lives, experiences, teenage stress and opinions of siblings without disabilities. Formatted like the slam books passed around in many junior high and high schools, this one poses a series of 50 personal questions along the lines of: "What should we know about you?" "What do you tell your friends about your sib's disability?" "What's the weirdest question you have ever been asked about your sib?" "If you could change one thing about your sib (or your sib's disability) what would it be?" "What annoys you most about how people treat your sib?"

The Sibling Slam Book doesn't "slam" in the traditional sense of the word. The tone and point-of-view of the answers are all over the map. Some answers are assuredly positive, a few are strikingly negative, but most reflect the complex and conflicted mix of emotions that come with the territory. Whether they read it cover to cover or sample it at random, teenagers will surely find common ground among these pages and reassurance that they are not alone. It is a book that parents, friends, and counselors can feel confident recommending to any teenager with a brother or sister with a disability.

Teens need both guidance and a grounding force in their lives, and the new book by Rob Garofalo, a renowned teacher known as "Mr. G" to his students, fills both needs. A Winner by Any Standard: A Personal Growth Journey for Every American Teen combines down-to-earth inspiration, nonpatronizing discourse and real world challenges.

This compelling book promotes such ideals as optimism, gratitude, self-belief, a strong work ethic, a sense of wonder, originality and humility. All the ideals upon which future success is built...success by society's standards and success as a human being. More specifically it provides the inspiration necessary for any teen to:
•Grow into a true individual
•Develop solid character
•Maximize his or her potential Increase social and emotional intelligence
•Make a real difference in the world
•Realize that when the right habits are in place, anything is possible

A Winner by Any Standard is a life-changing book that will inspire, affirm, and empower any teen. Be sure the young person in your life has a copy!

What's Happening to My Body? is a growing-up guide for girls and parents by Lynda and Area Madaras, encourages the young woman to explore, understand, and accept her own special body at the same time she is learning the basic facts of female development.

With scads of personal stories and an abundance of useful, detailed information about girls’ changing bodies and feelings, author Lynda Madaras and her daughter Area Madaras have expanded their guide for girls on the verge of change.

First published in 1983, the bestselling classic has been revised and updated several times over the years to keep up with ever evolving facts and wisdom about puberty in girls. In this third edition, the authors continue their straight talk on the menstrual cycle, reproductive organs, breasts, emotional changes, puberty in boys, body hair, pimples, masturbation, and all the other fun, scary, and interesting things that go along with growing up.

Filled with anecdotes, illustrations, diagrams, and honest, sensitive, nonjudgmental information for the young girl, the revised edition also addresses the new scientific facts about when a girl actually begins puberty (earlier than previously thought), advice on "female athletic syndrome," eating disorders, unwanted attention because of early development, and information on eating right, exercise, AIDS, STDs, birth control, and so much more. A welcome, reassuring book for parents and daughters, designed with the understanding that some girls and parents will want to read it together, and some will want to read it on their own; without a doubt, though, all will benefit.

Teen Stress explains about stress and how to get relief from the stress, physiological response of the body to situations or stimulus which are perceived as ‘dangerous’ to the body.

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