Talking With Children About Their Neuromuscular Diseases

Parents and experts consulted by Quest emphasize that you can keep the communication channels open and give your child helpful answers. The keys are to set a tone of honesty from the beginning and to focus your answers on the child's real concerns.

Elvira Ramirez, coordinator for Services for Children With Special Health Care Needs at the University of Kansas Medical Center in Kansas City, said, "Sometimes parents come to me when a child is 10 years old and say he's having a bad situation at school. 'He's always mad, he doesn't want to go to school and he won't talk to me about it when I ask him.'

"Well, you can't start at age 10," explains Ramirez, a licensed clinical specialist social worker who works with the MDA clinic at the center. "You have to set up open communication from the onset."

Parents need to introduce the disorder as a subject to be discussed factually without evasion, secretiveness or overpowering emotion. Then, as children develop more complex questions and feelings about it, they'll be less likely to hide their thoughts and find it easier to verbalize them.

In a tranquil, open atmosphere, Ramirez said, "The kid is feeling safe, and no matter how bad the situation goes, they're always going to have someone to talk to or understand. They'll be able to talk openly about it."

BIRTH TO AGE 7

How do you first tell your child that he has a neuromuscular disease? Generally, it depends on the child's age, what the child asks and the progress of the disorder. Suzanne Williams' daughter, Erinne, uses AFOs (ankle-foot orthoses), a standing frame and other aids because of spinal muscular atrophy. Williams, of Westland, Mich., said 2 ^1/2-year-old Erinne perceives that she's different from other kids her age who're running and climbing.

When Erinne's sitting on the couch, for instance, she'll scoot up to the edge and instead of climbing down, she'll say, "My legs don't work."

"She knows that her legs don't work and that her hands don't work as well as other kids' do," Williams said. "We tell her that we don't know why her legs don't work, that God made her that way, but that God gave her this wonderful mind."

Short and to the Point

Experts usually advise introducing the topic of a child's long-term condition when the child asks about some aspect of it: Why can't I climb the monkey bars? Why do I have to have braces? With slowly progressive neuromuscular disorders, the first questions may arise when the disorder causes frustration over something in the child's daily life.

Though Cheryl Caldwell had known for some time that her son Jody Erwin had Charcot-Marie-Tooth disease, as she does, she didn't tell him until age 7 or 8.

"He started noticing he couldn't do some things in gym. One day he came home just in tears; it took forever to get it out of him. He says, 'Mom, it's not fair I can't run as fast as the girls.' We finally had to sit down and explain it to him," said Caldwell, who lives in Arvada, Colo. Jody's reaction: "He looked at me kind of like he was surprised. He asked if it's contagious and where did he get it from? And, of course, I explained to him it wasn't contagious. It was something he got from Mommy and this is the way it is."

Bob Poole and his wife, Margi, of Parma, Ohio, learned when their son Matthew was 5 that he had Duchenne muscular dystrophy (DMD). At that point, "We sat and told Matthew he had Duchenne muscular dystrophy and that's why he couldn't run as fast as the other boys and why he falls. And that was really about all that we told him at the time. There were no questions and no reaction. If anything it was 'Oh OK, this is how it is.'"

Like other parents, Poole and Caldwell learned that young children are satisfied with a simple reason for the differences they've noticed between themselves and other kids. They usually accept a short answer given in language they understand, and don't want any further information yet. When they want more, they'll ask.

Poole said, "If you're watching them, you can tell when they've had enough. If they say, 'What is the matter with me?' you tell them, 'You have muscular dystrophy and it's something that makes your legs weaker, and that's why you can't do it.' That's good enough for them. They now have something to go with and they're OK for now."

Language and Honesty

Poole was initially hesitant to use the term muscular dystrophy with his son but was advised to get the words on the table early on. Using correct terms makes the condition more objective, something the child has, not something he is. It also makes the term less frightening.

The word disease may be more of a problem. Children associate being sick with feeling bad, staying in bed, taking medicine and getting well. Before age 8 or so, they may not comprehend that a disease or illness is what's making their muscles weak.

A simple description of muscular dystrophy as "something that makes your legs weaker" will help a child understand the weakness isn't his fault. Without an explanation, many children may believe their weakness is a punishment for "being bad" or that they're not trying hard enough.

Some parents believe they're protecting their children by not telling them about the diagnosis, saying there's nothing wrong or refusing to answer questions. But if they're not given answers, children create their own beliefs, blaming themselves or imagining the problem is much worse than it is.

Parents may also hesitate to open the subject because they don't want to be faced with such questions as, "When am I going to get better?" or "Why can't you fix it?" Even though you can't assure your child of improvement, the youngster will be less disturbed by a truthful answer than by an evasive one.

The Pooles answered Matthew and his brother Danny, who also has DMD, honestly when they asked about getting better. "We said that right now there is no cure and also right now they are closer than they have ever been. With young children, they just need to know that there are a whole lot of people working to fix it," Poole said.

At an early age, there's no need to try to describe the child's future or to list things the child "can't" do. First, it's impossible to know what a child will be able to do or what treatments may be available in another 10 or 20 years. And, it's better to focus on today and deal with the future only when the child brings it up.

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