One of the questions you'll wrestle with as the parent of a child with muscular dystrophy is: What do I tell my son?

TALKING WITH YOUR CHILD

You'll find that it's painful enough to explain his condition to family members, friends, teachers and even yourself, and to do what's best for him without getting lost in anger and sadness. How much more difficult it is to imagine telling a child that he has a medical condition that's going to make him weaker, that he'll be using a wheelchair in a few years, that you can't make him well, that he may face a shortened life span.

But open, honest communication about the disorder is an important key to helping him adjust emotionally and live as full a life as possible with muscular dystrophy. No one always knows the right thing to say, but the following guidelines may help you maintain patience and optimism in dealing with your son.

Timing

First of all, don't tell him anything until he's ready to hear it. When he starts to show curiosity about his disability, encourage him to ask questions and respond to them in a casual tone, as much as possible. Answer honestly at his level of understanding, just as you would answer his questions about any topic. Your child will develop an understanding of what his disability means to his life if you provide a little information at a time, at his pace. Try not to let your words or your body language convey the idea that this is a forbidden topic or a terrible tragedy.

When you first use terms like muscular dystrophy, disability, weak muscles or can't walk, don't be concerned if your son seems disinterested or refuses to believe you. Denial is commonly the first response to a major loss or shock. He'll move past this stage when he's emotionally ready to accept the truth.

Prognosis

Very likely he'll ask if he'll get stronger or get well. You can assure him that doctors are working very hard to find a cure for his disorder. Explain some of MDA's discoveries about the Duchenne gene and some of the current research. If he's interested in science, encourage him to read about this research for himself.

Honesty is all-important. Even if you don't think your child is ready for details, don't dismiss his curiosity or tell him there's "nothing wrong." That will confuse him, make him feel his perceptions are wrong or make him think his disability is his fault. Worst of all, it destroys his faith in you when he later discovers you weren't completely truthful. Strive to be both optimistic and honest; to use accurate language and give him only as much information as he's ready for.

Parents need to give their sons with DMD plenty of affection and encouragement, along with physical help.

Don't try to paint a detailed picture of the future. A child needs to believe that his life is filled with possibilities and opportunities, as of course it is. Some parents and other adults wonder if they should "protect" their children by saying things like, You won't have a girlfriend . . . you can't drive a car . . . you won't be able to work . . . you'll never get married or have children . . . you'll have to live with us for the rest of your life. Such doomsday predictions only plant a hopeless, gray image in your son's mind and give him a sad attitude toward life. There's no need to take away his dreams and his capacity for enjoying his life.

Besides, no one can see the future. Young men with DMD have done all the things mentioned above and many more that they were told they'd "never" do.

Medical Decisions

As he gets older, your son should be given more medical information about his disease and be encouraged to ask questions of his doctors and other health-care professionals. He'll also become more involved in decisions about his medical treatment. Whether and when to have scoliosis surgery or assisted ventilation or get a power wheelchair are some of those decisions.

While you and his other parent are legally and morally responsible for his medical treatment, it'll be a great boost to your child's sense of maturity for you to ask -- and listen to -- his opinion. You can usually respect his wish to wait until after Christmas, or do it before he starts seventh grade, or go on a vacation first, without creating additional medical risk. The age at which you should relinquish your control over your son's medical care depends on your judgment and his maturity.

Death

At some point, your child will raise the question of his life expectancy. Many youngsters don't voice this question until they're in their teens, although some boys may bring it up at a younger age.

Young children have a limited understanding of death and time. Before school age, a child may think of death as sleeping or a temporary absence. They often don't reach a full realization of what it means for life to end until the pre-teen years or even later.

If your very young child asks about death, don't feel you have to give a precise answer. It's OK to tell a 5-year-old with DMD that he's going to live a long, long time, because in a 5-year-old's world view, he is.

But as your son gets older, you can't protect him from knowledge. A curious child will read about his disease. Many kids will talk about it with their peers and older kids at MDA summer camp, clinic or social activities. Your son may have friends or siblings with DMD who have died.

Most boys with DMD at some point realize they keep getting weaker and become curious about where the disease is taking them. Depending on your child's level of maturity, and usually sometime between ages 8 and 12, it's time to answer his questions about death truthfully. If you continue to avoid the topic, he'll feel there's something "wrong" about raising the question. And you'll discourage the kind of open communication you need to provide him with the ability to cope with his disorder.

For those with DMD, the best answer may be, "Most boys with your disease live into their mid-20s, some even longer. But that's a long time from now for you, and by that time I'll bet MDA's scientists will have some very good news."

It's important that your words convey hope and encourage your child to enjoy living. But when he's old enough to be seriously concerned about his future, your honesty is one of the most important things you can give him.

Next... Your Child's Emotions