THINKING ABOUT TOMORROW:
Independence for Teens and Parents
by Carol Sowell

Adolescence is the time to find out and assert who you are as an individual - not just as a member of your family or your school or your community, and not just as a person with a neuromuscular disease.

As psychologists put it, "The task of adolescence is to individuate." Becoming an individual means changing, and it is a necessary step toward becoming an independent adult.

You may find that, as a teen-ager with a neuromuscular disease, you have some specific concerns about independent living. You may also find that doctors, teachers and others have little advice to offer you. That's partly because the medical advances that allow children with chronic conditions to live well into adulthood are relatively new.


TIMING

With few models to follow, you and your family may sometimes be unsure how to prepare you to be an independent adult.

In both practical and psychological terms, you may face what Dr. David Rosen, an adolescent medicine specialist at the University of Michigan Medical Center in Ann Arbor, calls "the autonomy struggle" a few years later in life than people without chronic conditions. While an adolescent without a health problem may have a high level of emotional independence by the early 20s, Rosen says, sometimes those with chronic conditions don't even begin the process of emotional separation until that time. And the struggle may take a little longer.

Houston family therapist Ellen Howard, who facilitates an MDA parents' support group, also sees a discrepancy between the chronological, intellectual and emotional ages of adolescents with neuromuscular diseases. Emotional maturity lags behind the other areas simply because of the need for more extensive, everyday personal care.

"These kids need that physical care that parents have to give and they can't physically get away from their parents" to do the things other teens might do to establish a separate identity, she says. In other words, if you need extra physical care because of your neuromuscular condition, you'll probably begin the physical separation from your parents a little later. The emotional or psychological separation usually can't take place until you have gained control over your physical needs and decisions.

These uneven levels of maturity can be frustrating. Most teens get annoyed when it seems their parents are treating them like children. And when you're physically dependent, your feelings about your parents are likely to be even more complicated.

One 20-year-old says, "If it weren't for my parents, I'd be dead, basically. They're my out, my legs, sometimes they're my body. Now I'm trying to tell my parents that I'm an adult. It's hard to do. When you depend on other people, you have to be nice to them."

Rosen notes that teens with disabilities who recognize their parents' "overprotectiveness and infantilizing . . . are unwilling to tell their parents that's going on because they are dependent on their parents, they rely on their parents and they love their parents. They don't want to appear ungrateful for whatever sacrifices their parents have made for them."

Striking out on your own, when you're ready, helps resolve these conflicting feelings. You can express your gratitude and show your maturity by taking on some of the responsibility for yourself.

Angela Wigglesworth, 18, a freshman at Texas A&M University in College Station, manages fellow students who provide her personal assistance in her dorm. She not only likes being in charge, but "I'm sure my parents feel their independence, too, just because they don't have to wake up every morning and worry about getting Angela ready to go to school. Now, that's my roommate's job, and I'm very happy for my parents that they have that opportunity."


PERSONAL ASSISTANTS

Hiring and managing your own personal assistants may be the single most crucial step toward independence for a young person with a neuromuscular disease. It may also be one of the hardest steps to take. When family members have provided such intimate care as dressing, bathing and helping you in and out of bed for 17 or 18 years or more, it's tough for both you and your parents to even imagine someone else doing it.

Mike Neufeldt, 18, a Milwaukee high school senior, says, "Dealing with personal assistants is my biggest concern about the future." But he's prepared for the responsibility, based on experience with non-family assistants at camp.

Parents in Howard's support group have also found MDA summer camp an opportunity for their youngsters to practice independence and to be assisted by others. "For the parents who make the break and start to allow those little venturings, it's liberating," she says.

Learning to manage personal assistants helped Jamie Labbe, 20, feel more grown up. A sophomore at Virginia Wesleyan College in Norfolk, he found a student aid program that would provide funding and arranged for an instructor to announce that he was looking for help in the dorm. He interviewed applicants and chose three people.

"The way I look at it is that, if I wanted to be independent, it's something that I had to have," Jamie says.

For Angela, taking responsibility for her own care and learning to ask for what she needed was a positive experience. "What I feel independence is as a handicapped person is being able to trust others other than your parents and having faith that everything will be OK," she says. "It's scary having to put your trust in someone else, but if you really believe that it will be OK, I've found that everything will."


FRIENDS

When you leave home for college or work, you may lose your social network and need to make new friends. That's one of the prices of independence.

For Alicia Muller of Secaucus, N.J., "High school was the best time of my life. Everyone was used to my being there, so it was a good environment for me."

Alicia was elected senior class president and homecoming queen and graduated near the top of her class. A tracheostomy in 10th grade began to limit her mobility and independence just as her peers were starting to go out without parental supervision.

Before that time, her neuromuscular condition "wasn't an issue because kids couldn't go out to New York or to the clubs. They stayed home and played Nintendo or games and that's where I fit in. But as I got older, it was a pain."

Now 21, Alicia has decided to stay with her parents for the time being. "It was rough when my friends went away to college and that's really when I could see I was different. That's when I realized, 'Wait a minute, I have muscular dystrophy,'" she says.

Christopher Rush, 19, says of his high school days in Rochester Hills, Mich., "I was lucky. I lived in the same town all my life and knew the same group of kids. There's less ice to break. I built a reputation."

But when he enrolled at the University of Michigan in Ann Arbor two years ago, "I had to start all over and that was the hardest part." Chris took the initiative and made new friends in his classes and in the dorm. He joined a prelaw fraternity and also socializes with other graduates of his high school who attend the university.


WHEELS

Driving - a leap to independence - can present a new impediment to those with neuromuscular diseases. While most teens get driver's licenses at 15 or 16, you may have to wait until you can afford a vehicle with hand controls.

Power wheelchairs and other equipment make it difficult to ride in friends' cars. So you rely on the family van. Does that mean you're stuck with Mom or Dad doing all the driving?

Not necessarily. As Chris got older, his parents gradually allowed his friends to drive their van. By making such changes, his parents "weaned me off total dependence."


PARENTS

Could you wind up like the 40-year-old man with muscular dystrophy whose mother, at age 70, began to wonder who would take care of him after she died? Your parents probably don't want that to happen any more than you do, but they don't always know just how to help you make a smooth transition to adulthood.

You'll have an easier time if your parents have created the expectation that their physical and financial care for you "will end at a certain time and that you'll leave at a certain time," Rosen says. Though there will still be anxiety when the time comes, it will be much milder than what occurs in a family that has not planned for the future.

Jamie says his parents had the same expectations for him that they had for their six older, nondisabled children.

"My parents told me that sometimes it was going to be tough, which it is. But they taught me that I was the only one who could help myself, and if I wanted to do something bad enough, I'd find a way to do it," he recalls gratefully.

At age 12, he was told he needed surgery to correct scoliosis. His parents said he could decide whether to have it right away, though they guided him to go ahead with surgery and he did.

"I like the fact that they felt I was mature and responsible enough to handle it," he says. That trust helped build Jamie's self-confidence and prepare him to make decisions as he got older.

Chris's parents also looked ahead when he was a child.

"When I just started kindergarten, they fought to get me mainstreamed," he recalls. "My parents had the foresight of knowing that mainstreaming was a better way to go as far as building a career and being successful. From then on they were very supportive."

Chris looks forward to moving into an apartment this summer, then to finishing college and going to law school. To him, independence is an adventure.

"It's freedom. I'll always be dependent on someone as far as attendants and that type of thing," he says. "But it's a chance for me to try new things, a chance to prove to myself how capable I am."


RESOURCES

Books

Disability and the Family: A Guide to Decisions for Adulthood, by H. Rutherford Turnbull et al., Paul H. Brookes Publishing, 1989. Information on decision making, financial planning, government benefits, advocacy and other topics. Includes a glossary, resources and checklists.

How It Feels to Fight for Your Life, by Jill Krementz, Little, Brown & Co., 1989. Candid profiles of 14 youngsters up to age 16 who are living with serious illnesses and disabilities. Taking Charge: Teenagers Talk about Life and Physical Disabilities, by Kay Harris Kriegsman et al., Woodbine House, 1992. Written for young people ages 13 to 18, this book delivers positive, frank advice on dealing with issues such as independence.

Pamphlets

Learning to Live with Neuromuscular Disease: A Message for Parents, by Sylvia E. McGriff. This MDA pamphlet contains advice for helping your child grow up. Available at MDA offices in English and Spanish, free.

Planning Your Dreams: A Roadmap for Life after High School for Students with Disabilities and Their Families, Minnesota Educational Services, 70 County Road B2 West, Little Canada, MN 55117, (800) 848-4912, ext. 2401, $3.

Articles

"Get the Most Out of College," Quest, Vol. 2, No. 1, 1995.

"Getting By with a Little Help from Your Personal Assistant," Quest, Vol. 1, No. 1, 1994.

"I Don't Need a Nurse," Quest, Vol. 2, No. 1, 1995.

"Make the Most of School," Quest, Vol. 2, No. 2, 1995.

Organizations

Adolescent Employment Readiness Center
Children's National Medical Center
111 Michigan Ave., NW,
Washington, DC 20019-2970
(202) 884-3203

Publishes "CareerFocus" newsletter, college catalogs and other resources.

National Center for Youth with Disabilities
University of Minnesota
Box 721
420 Delaware Street SE
Minneapolis, MN 55455-0392
(800) 333-6293; (612) 626-2825

Publishes "Connections," a quarterly newsletter for young people, and bibliographies on topics such as self-esteem, recreation, sexuality, transition to adult health care, decision making and substance abuse.


TIPS FOR TEENS

  • Ask your doctor to recommend an adolescent medicine specialist, or call a nearby university medical center for names. Adolescent medicine practitioners give guidance on a range of physical, sexual and psychological concerns.

  • A nurse, psychotherapist, social worker, guidance counselor or other professional may also help with the issues of independence.

  • Getting to know a slightly older person who's already dealt with the issues you face can be invaluable. Young adults with neuromuscular disease that you've met through MDA summer camp and clinic will probably be delighted to talk with you or write to you. If you don't know anyone, ask the health care service coordinator at your local MDA office. Angela Wigglesworth participates in a program for "at-risk children," offering her encouragement to help youngsters with disabilities build self- confidence.

  • Choose activities that you enjoy and are good at. Both Chris Rush and Mike Neufeldt kept statistics for the basketball teams at their high schools. That gave them the opportunity to enjoy the camaraderie and teamwork of sports in a much more direct way than most of the able-bodied students at the school did. Mike advises, "Keep an open mind. Disability doesn't mean you're totally unable. Everyone has a lot of abilities. Lean on your strong points."

  • If you're ready to spread your wings but your parents don't believe you can handle it, it'll take patience and persistence to show them you're responsible. Start with smaller things - choosing your hair style, clothes and friends.


    TIPS FOR PARENTS

  • Start early. Dr. David Rosen advises discussing independence "whenever the kid is ready to start talking about it," perhaps as early as 11.

  • Let your adolescent manage personal assistants, at least part-time. The teen, not the parent, should tell the assistant what to do and how to do it. This will give the teen autonomy in choosing how to dress and bathe, and will develop the understanding that an assistant is his employee, whose job is to carry out his choices - not a medical caretaker.

  • Let go gradually. Allow your child to go to MDA summer camp or take other short excursions. Let her plan and arrange public transportation across town, then perhaps take a part-time job. Your fear won't vanish, but your confidence - and your child's - will grow.

  • Encourage your teen-ager to pursue what he likes and does well. That helps develop a winning attitude, not one focused on his disability. Adolescents can practice problem-solving, and they'll learn from experience what their limits are.

  • Respect her privacy. Physical caregiving is intrusive by nature so you'll have to make a special effort to allow whatever physical privacy is possible. Respect your youngster's choices about what information to share with you, and her need for time with close friends.

  • Build your own support system. MDA has support groups for parents, where you can express your concerns and get advice from those who've walked in your shoes. Your situation is unusual, and you may need to seek help from adolescent medicine specialists or other professionals.

  • If your adolescent seems afraid of independence, he may need a little push. Give him some responsibilities and don't support his claims that he "can't do anything." Point out what other people with disabilities have achieved. Suggest ways to solve problems or encourage him to find solutions.