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AGE 7 THROUGH 12

Talking With Children About Their Neuromuscular Diseases

She advises explaining treatments the child is undergoing - braces, wheelchair, physical therapy, occupational therapy, breathing exercises, etc. - in terms of how the device or treatment works and what it's for.

If other children or teachers are having difficulty understanding a child's diagnosis, a presentation at school may be in order. Parents and teachers can call on their local MDA health care service coordinator or medical experts to come to school and explain muscular dystrophy and impart some disability education. This helps the affected child's social adjustment and self-esteem by removing some of the other children's fears and misconceptions.

Parents can learn what concerns their children by listening to their comments and questions during clinic visits. If a child asks about walking, fatigue, sleep problems, etc., Ramirez advises parents to continue talking about the topic at home.

"When you ask at dinner, 'How did you do in school today?,' you can also ask, 'Are you having any problems getting around?,'" Ramirez suggested. She advises making the questions casual and matter of fact, a normal part of family conversation.

A child's interaction with other kids also provides clues to his level of understanding and comfort with his disorder. If a child doesn't seem to have the words to answer such questions as, "Why can't you walk?" or "Why do you have muscular dystrophy?," parents can use those encounters as springboards for a later discussion that will help the child to develop answers.

New signs of disease progression should also be handled matter-of-factly, rather than as catastrophes. Ramirez said, "Basically it's that old adage, I'm OK, you're OK. You almost have to teach them to have a 'so what?' attitude. That's a healthy way to deal with reality." For example, rather than discussing a wheelchair as something to be dreaded and avoided, try to present it as a tool that will give the child new freedom. That way, the family won't see the introduction of a wheelchair solely as a step downward or a symbol of loss.

Ramirez said that when children see peers with the same diagnosis changing, they'll raise questions such as, "Am I going to be like that?" The changes may range from having more difficulty walking, to using a ventilator, to death.

"I think parents need to be honest," Ramirez said. "If the kid has the same diagnosis and asks if he'll have to use a wheelchair like Johnny does, you have to say, 'Probably you will, but that doesn't change Johnny. He's going to be the same kid. That wheelchair is just a piece of equipment that he needs to help him get around.'"

Parents' and Children's Emotions

It's important that you have your emotions under control while talking to your child. Children can interpret parents' excessive tears, anger or withdrawal as signs that they've made their parents feel bad.

Williams, who runs a child care center at a hospital and has two children older than Erinne, said, "I think that's probably the first step, the parent has to accept it. And just like you work through the normal stages of grief, you've got to come to the point where you're done being angry, you're done being depressed over it."

It isn't that you won't have these feelings again; they'll almost certainly come up, especially at times of crisis and change. But you can give your child strength only when your words and tone convey assurance that the family can handle this disease and any problems it brings. Ramirez recalls a mother who was having a crisis with changes in the school system's program for her child with a disability. At the same time, she was growing worried because her son was becoming more withdrawn.

When Ramirez got the child to talk, he said, "She's always crying, she's so upset." The boy was trying to comfort his mother and becoming increasingly concerned about her. Ramirez reassured the mother that it's normal to be upset when problems become overwhelming. She advised her to get help to solve one problem at a time, and to seek some counseling to help her cope.

In the middle years, a child who's seemingly adjusted well to living with a neuromuscular disorder may show problems in school or become more withdrawn. This can be triggered by the child's greater awareness of the social limitations imposed by the disability and its implications for the future. Ramirez notes that kids with chronic illnesses frequently have episodic depressions, which may begin as early as age 9 or 10, when differences between themselves and other children become more obvious.

This is when a pattern of open communication pays off. Children are more likely to turn to their parents if they know their feelings will be met with understanding and help. Parents may seek professional psychological help for a child with lingering depression, Ramirez said, or they may be able to help a child who feels isolated by finding groups and activities he'd enjoy.

Stressing the Positive

From an early age, it's important to emphasize your child's abilities and talents. In talking with his sons about their DMD, Poole said, he "would stress that they are not just a big muscle. That's not who they are and they have so many other abilities that God has given them." Matthew, now 24, excels in art and writing.

"He's focused on these abilities to find out who he is, which took him quite some time," Poole said. "It helps him to accept not just the fact that he has muscular dystrophy, but to accept himself as a human being and to know that he has a place on this Earth. Just because he can't walk or work doesn't mean he's not important."

Caldwell, mother of two children with CMT, said, "My attitude has always been, everybody's different in some way."

Her 10-year-old daughter, Mariah, has just begun to notice her physical limitations. "She'll come home and she'll be in tears and we've sat and talked about it. I keep reminding her, 'Mariah, it's OK if some of your friends are good in gym or can run faster. Can they draw like you can draw?'"

Mariah then agrees that she's better at math or other skills than some of her friends, her mother said. And the realization helps her feel better.

Why Me?

In the preadolescent years, youngsters begin to ask why they have muscular dystrophy. It isn't an easy question for parents to discuss, especially if they don't have an answer satisfactory to themselves.

Again, honesty is the best approach, along with encouraging children to express their views. When each of Poole's two sons with DMD asked why they had the disease, he said, "We don't know why." Putting the question in a religious context, the family would discuss "how sometimes we don't know why bad things happen to us. We have to wait sometimes until we are with God and have a chance to look back on our lives to see it."

Poole also emphasized the impact his boys' lives have had on others. He pointed out that Matthew and Dan have influenced their brother who doesn't have DMD in his decision to become a special education teacher.

For Matthew these answers were reassuring, Poole said. Dan, now 19, "is still struggling with the whole concept of God, and if there is a loving God then why did he do this to him." Children's personalities and experiences influence how they respond to having a neuromuscular disorder and what they need from their parents. Dan Poole has watched his older brother progress through the stages of DMD, knowing he'd soon be affected in similar ways. Since age 7 or so, he's displayed far more anger about the disease than Matthew did.

"For us with Dan, it's an ongoing thing to help him accept himself," his father said.

ADOLESCENCE AND BEYOND

A lifetime of open communication with parents helps teens discuss issues relating to independence, career, marriage, medical care and death, and how each of these is affected by neuromuscular disease.

Poole said his policy of honest answers extended to his sons' questions about feeding tubes, ventilators and life expectancy.

"In his early teens, Matthew would ask about a ventilator or a tracheostomy," he said. "Then together we would have to sit and talk about at what point in his life, if ever, he might want that. And, as it worked out, he never wanted to have a tracheostomy but the ventilator was fine."

The Pooles also found that during times of hospitalization, or when friends with muscular dystrophy died, they were able to discuss end-of-life choices with their sons.

Such discussions were difficult, Poole said, but "in the long run those types of conversations actually make them and us a whole lot stronger."

Parents' rewards for a lifetime of open communication can include seeing their children choose professions and relationships that are both satisfying and realistic; watching them triumph over difficulties and solve their own problems with self-confidence; and knowing they've made peace with their diagnoses.