INDEPENDENCE

Youngsters with DMD have a dilemma that usually doesn't face able-bodied children. As they get older, especially in the pre-teen and early teen years, kids usually earn and develop more independence from their parents and are granted increasing freedom to make their own decisions and spend time away from home. This is a natural development that comes with their maturing bodies, more alert senses, increased responsibility and greater mobility.

But when a child has a progressive neuromuscular disease, just as he's getting older and feeling the psychological need for more independence, his body is getting weaker. He becomes more, not less, reliant on parents for physical care and transportation. There may be an increasing gulf between him and his peers, and he may feel isolated to a greater degree than he did as a younger child.

He may need help with dressing, bathing, shaving and getting to the bathroom. His parents or siblings may carry him up and down stairs or to the car. He can only ride in a van that's adapted to accommodate his wheelchair. At school, he may leave class early to get to his next class on time or take a freight elevator instead of horsing around in the hallways with friends.

At puberty, even the most self-assured young man with a disability may feel overwhelmingly conspicuous and more self-conscious about being different than he ever did before. Driving and dating seem impossible, and he may think his friends have left him behind. He's physically exhausted from the effort of a normal school day, and he worries that he's growing even weaker.

This is an immense struggle that can affect your son's sense of self-worth. It's important that you help him develop independence and maturity by focusing on his abilities.

Step by Step

In both practical and psychological terms, your son may face "the autonomy struggle" a few years later in life than a teen without a chronic condition. While a healthy adolescent may have a high level of emotional independence by the early 20s, sometimes those with chronic conditions don't even begin the process of emotional separation from their parents until that time.

Emotional or psychological separation usually can't take place until the person has gained control over his physical activities. In some cases of DMD, he may always need his parents' physical care, but he can become independent in other ways.

When your son starts to express a need for more independence, congratulate him. People with disabilities become independent by taking verbal control, by making decisions and telling others what they choose to wear or eat, how they need to be turned in bed, or what time they must leave for work. Your son can be given increasing responsibility for taking care of himself, even when he needs a go-between for the physical activity.

Some people advise that your son with DMD should start to manage his personal assistants in his early teens. You can begin by asking him his preferences about clothes, about handling his body, and respecting and following his choices. As he gets a little older, if it's financially feasible, you can hire part-time assistants. This will be uncomfortable for him at first. He's used to family members providing intimate care and must learn to trust new people.

Let him have a major role in choosing and instructing hired assistants. If you can't afford outside help, be sure at least some of those who assist him are male, whether older brothers, other relatives or friends. Then let them work in privacy.

Think of it this way: If your 17-year-old son had no disability or chronic disease, you wouldn't barge into his bedroom without knocking or watch him bathe. Try to give your son with DMD the same privacy.

Some other tips for helping your son develop independence:

Start Early

Discuss independence whenever the boy brings it up, or when he seems physically and emotionally ready. In many families, 11 is a good age.

Learn to Let Go

Start letting go gradually, as you would with any child. You can allow your child to go to MDA summer camp or take other short excursions with friends or other caregivers. Let him plan and arrange public transportation across town. Some parents have even allowed their teens with neuromuscular diseases to travel overseas, go to boarding school or take part-time jobs. Your fears won't vanish, but your confidence -- and your child's -- will grow.

Consider letting his friends drive your van. By his late teens, your son will hate having you drive him everywhere. When his friends have their driver's licenses and their parents let them drive the family car, it makes sense to let one or two trusted young people drive your adapted family van on some occasions. It'll help include your son in his peers' activities.

Be Willing to Take Some Risks

Young people who have a strong sense of self-worth want to try a lot of things, some of which seem silly, foolish or dangerous to their elders. But risk-taking is one of the ways people learn their limits and abilities. By encouraging your teen-ager to pursue what he likes and what he does well, you'll help him learn to solve problems and develop a winning attitude.

Expand His Support System

Eventually your child will have to rely on others outside the family, to some degree. His health-care providers are part of his support team, including an MDA clinic physician for his neuromuscular disease. Also be aware when he's ready to stop seeing a pediatrician and see an adolescent medical specialist or adult doctor for his general health care.

Encourage his involvement in school and community activities and his friendships with other teens with disabilities.

Remember He's an Individual

Most of your child's personality characteristics have nothing to do with his medical condition. Be interested in all aspects of his life, and hear his concerns when he's talking about himself.

Consider a Service Dog

Some kids with DMD start using a service dog in late elementary school. The dog goes to school with them, retrieving items dropped on the floor and objects off high counters and shelves. Trained service dogs also turn wall switches on or off, open and close doors, carry packages and wait patiently to receive instructions. They help their human partners balance on stairs, or brace them when they get in and out of a chair or bed.

A service dog can even help do part of your job. One dog keeps an eye on a boy with DMD during the night and awakens one of his parents if their son needs to be repositioned.

A service dog can also help your child develop trust and confidence. For shy kids, it's a great icebreaker and a wonderful companion. Many young adults take their service dogs to college and to work, enabling them to remain independent longer.

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