YOUR CHILD'S EMOTIONS

Children with physical disabilities have the same essential emotional needs that all children have. They need to be loved, to feel valued and safe, to develop strong self-esteem, and to be able to handle troubling events and emotions as they arise.

Child development experts advise that children with disabilities be treated the way other children their age are treated. In a section of Baby and Child Care called "Handicapped Children," Dr. Benjamin Spock writes, "The important factors that make a person (with or without defects) grow up happy and outgoing are having parents who thoroughly enjoy and approve of him, who do little worrying, urging, fussing, criticizing; having opportunities to learn the fun of give-and-take with other children from an early age."

By following a few common-sense guiding principles, you can help equip your child with the self-worth and skills he'll need in coping with his disease as well as other challenges in life.

From birth, give him plenty of love, security and optimism. Don't neglect discipline and making your expectations clear. Be sure not to stint on hugs and cuddles either. People with disabilities need physical affection as much as the next person.

Respect his dignity and individuality by realizing his feelings are his, not yours. It's especially important to help him develop a sense of control and choice about things in his life, since he has no control over the disease.

Encourage him to express all his feelings, including painful ones, such as anger and fear, and help him find constructive ways to do so.

When he's upset because of something related to his disease, view it as a problem-solving challenge. You can't make his muscular dystrophy go away, but you can find ways to help him enjoy, participate and feel independent.

Never forget that he's an individual with all the complex personality characteristics of any other child. Always see the boy first, not the disease.

Encourage in every way possible his enjoyment of his life, his sense of achievement, and his hopes and dreams.

In order to follow these principles, it's important that you not develop the habit of attributing everything your son says or does to his muscular dystrophy. Understanding the physical stresses imposed by the disease, and talking with other parents through MDA support groups, will help you distinguish which behaviors may stem from the effects of DMD and which are from his own personality or events in his life.

Although there's no one emotional pattern that fits all boys with DMD, researchers have found certain emotional tendencies among children with serious illnesses or other disruptions and crises in their lives. In some cases, children with diseases such as DMD show strong feelings of isolation, inadequacy and worthlessness. A progressive illness, as well as other problems in the household, can contribute to serious depression, even in toddlers.

To help you realize how a disease can have a powerful emotional impact on a very young child, think about your child's experience from his perspective: If a young child is hospitalized, has to undergo surgery or is rushed away in an ambulance hooked up to life-support equipment, he's overwhelmingly frightened. A child lives in the here and now; at an early age, he simply doesn't have the intellectual or emotional ability to know that a crisis will pass or to understand that medical intervention may be good for him. Adults can put events in perspective. If their physical abilities change, they learn to adjust their goals and activities, emphasize abilities and compensate for lost capacities.

Children, on the other hand, are constantly developing new abilities and interests, and find each achievement a marvelous addition to their self-definition. Lacking an adult's long-term perspective, they may see loss of any ability as a loss of an important part of themselves. What emotional reactions might your child have to the effects of DMD? By the time he starts school, a child who can't move as well as others his age will notice the difference. If he's easily fatigued and can't participate as much as others, he'll feel the lack of activity as a loss. He may seem to take these realizations in stride, or he may experience a raft of emotions. Seeing your child feeling upset or unhappy will be painful for you. But it's vital that you keep your emotions separate from those of your child. If you express the pity, sadness or fear you may feel, he'll reflect those feelings rather than his own. The most important thing a parent can do to help a child deal with his feelings about having DMD is to let him experience them as they arise. It's essential that he be able to say what's on his mind and get his questions answered. If he can't express himself to you, he may add shame or sadness to his troubling emotions.

Of course, your son may not always come right out and say what he feels. He may not have the vocabulary to do so. So watch for indications of sadness such as withdrawal, extreme expressions of fear, displays of uncontrollable anger, and other nonverbal signs that he's troubled. With gentle questioning, you can help him determine why he feels that way and show him how to verbalize his feelings.

By all means, never tell a child not to "feel that way" or urge him to bury his feelings. Parents who squelch a child's emotional expression send the message that there's something "wrong" about his feelings. That damages his self-esteem, making it even harder for him to adjust to life with a disability. Being ashamed of his emotions and thoughts can make him feel even more isolated and unhappy.

One mother felt heartbroken to see her son, who loved playing baseball, growing weaker on the field and falling as he ran toward first base. Eventually the boy decided not to play any more. For the sake of his independence, his parents waited until he made the decision himself, allowing him to come to terms with this loss on his own time.

On the bright side, children are resilient. They may express a strong feeling one moment, then just the opposite the next moment. If a child is basically happy and secure, he'll gradually incorporate a realistic awareness of his disability into his self-concept. That's why helping him see his many abilities is so crucial.

During your son's childhood experience of DMD, he may display curiosity, anger, guilt, hurt, sadness or fear about the differences he perceives between himself and other kids. All of these feelings are normal. Your goal in responding to his emotions should be to help him acknowledge them and move on. If he gets "stuck" emotionally, his anger or depression may come to rule his life. You can help prevent the emotion from snowballing into a serious problem. For instance, by helping him express his frustration at not being able to run fast, rather than pitying him or squelching that feeling, you can do a lot to keep his feelings from festering into something more serious.

If you can convey to him that he's loved, accepted and considered a "normal" child at home, you'll help him regard himself that way at school, with friends and in the larger world. The more you encourage him to express himself and to do things on his own, the more competent and strong he'll feel, today and in the future.

Curiosity

Curiosity will arise as simple questions: Why doesn't he have braces on his legs? Why can't I run as fast as him? Why did that other kid call me "cripple" or "lame"?

The simpler the answer, the better. Keep the language at his level, and don't imply a judgment or a negative feeling about his condition. You might say, "Your legs aren't as strong as his so you need the braces to help you stand up." Or, "Everybody's not the same: He may run faster than you but you've got the most beautiful blue eyes in the world." Or, "You fall down sometimes because you have something called muscular dystrophy. It's something that makes you different. But everybody's different in some way."

Anger

When your son realizes that other kids can walk and he can't, he'll naturally feel it's unfair. He'll want to walk, and he'll ask you why he can't and why he has to have muscular dystrophy -- and you won't have a satisfactory answer. He'll feel frustrated and angry, and may show this through screaming, hitting or even hurting himself.

You can validate his anger while showing him there are appropriate ways to express it. Tell him, "I know it makes you mad that you can't walk. It's OK to be mad and to tell me that you're mad. . .. If you feel like yelling about it, let's sit on your bed and yell a couple of times. But don't throw your sister's toys on the floor when you feel mad. That's not a good way to show you're angry, because that hurts her and it doesn't help you."

Solving a specific problem can often go a long way toward erasing anger. If your son is frustrated when he sees other kids racing around the neighborhood on bicycles, tell him you'll get his sister or a neighbor child to pull him in the wagon with her bike. Or tell him it's time for him to have a cool scooter to get around in. And follow through on your promises. Showing him how to act positively on his anger is another healthy approach. Timmy used his allowance to buy a lightweight toy gun that shoots soft projectiles, then found he couldn't pull the trigger. His mom helped him write to the manufacturer and suggest that a gun with an easier trigger would appeal to many boys like himself.

Guilt

Parents often don't realize that their children sometimes feel guilty for being ill or disabled. A boy with DMD may be ashamed or think he's being punished for being bad. If he picks up on his parents' worry about him, or on excessive praise for other kids' athletic accomplishments, he may feel: I'm a lot of trouble for my mom and dad, The way I am makes them sad .They'd like me better if I was a good skater like Scott. Statements like this are cues you can use to help your son understand his neuromuscular disease. DMD often isn't diagnosed until a boy is 4 or 5 or even older. Before he gets a diagnosis, the child can't understand why he tires so easily and he may feel bad about "not being good enough" or "not trying hard enough." He needs to understand that he has a disease that isn't his fault in any way. You can help reassure your child that his physical weakness didn't happen because of anything he did, and it doesn't make him bad or less important. For some youngsters, a diagnosis or an explanation is a relief, because it means they're not failures. Assure him that you couldn't love him any more than you do, that he's a source of joy and happiness for you. When you know he understands this, shift his focus from his disability by praising something he does well.

Hurt

You have little control over how other kids treat your son, especially as he gets older and continues to meet new people. You can use some of the techniques discussed under "Adjustment to School" to help relatives, neighbors and classmates accept your son as he is and understand his disability. But you can't expect the whole world to be enlightened, and there will probably come a time when an insensitive child, or adult, makes fun of his disability. If your child is hurt by someone's comment, show empathy for his feelings and let him cry or express his pain. Crying comes naturally to young children, and it helps them move past their pain. Tell him that it hurts your feelings, too, when someone says something mean. And tell him they said those things because they don't understand. Next time it happens, he can say, "It's mean to make fun of other people" or "I get along just fine in my wheelchair. And I can sing and play Nintendo really well." He just may start teaching others a thing or two.

Fear

Two other emotions that arise for kids with DMD can be very disturbing for parents to witness: fear and sadness.

The best way to respond to these expressions depends on your child's age, how well he understands what's happening and the event that leads to the reaction. As your child gets older, encourage him to pursue his own interests and develop his abilities. The more good things he has to focus on, the less likely he is to brood over his illness.

It's typical for each crisis point in the disease to trigger a deluge of emotions. Each time he realizes there's a new degree of loss and dependency, he may grieve and feel strong emotions, including fear and sadness. Children and teens with DMD go through great personal turmoil as they face these losses and may even experience personality changes.

Some of these crisis or transition points are easily recognized: using a wheelchair full time, starting a new medication, having to go to special education classes, needing a power wheelchair, facing scoliosis surgery, requiring a tracheostomy. For a child, other events that he considers important may trigger emotional crises realizations such as: I'm getting worse at baseball .I can't throw a Frisbee as far as I could last year .I need more help dressing myself .my little brother is getting stronger and I'm getting weaker all my friends are learning to drive . the girls don't pay any attention to me. For those with DMD, the awareness that their lives may end before they finish high school or college is a major emotional crisis that arouses fear.

Your son may also be afraid because of a medical event such as upcoming surgery. You can help by giving him the facts he requests and focusing his attention on the benefits he'll receive. If he's been led to understand why he needs surgery or a new piece of equipment, and feels it's partly his decision to go ahead with the procedure, he'll be much calmer when the time comes. For a younger boy who can't see the long-term benefits, assure him you'll stay close, you'll make sure the doctors do a great job, and he'll be coming home before you know it.

At these times of crisis, you'll be going through your own emotions as will other members of your family. You may not all be on the same timetable. For instance, when your son is falling frequently, you may think it's time for a wheelchair. But he may not be ready to accept that change; it represents a great loss of independence and marks him as different from other boys. You need to help him prepare for this change, with patience and empathy. Emphasize how much more mobility he'll have with wheels, and gently help him reach acceptance.

Sadness and Depression

Sadness is a normal reaction to loss. But if it doesn't pass, it may become depression, a medical condition. In the general population, about 5 percent of children under age 18 are classified as clinically depressed at some time. Chronic illness is a risk factor for depression, meaning that probably more than 5 percent of children with DMD experience medical depression.

An emotionally healthy upbringing can help keep depression at bay. But if your child does become depressed, it doesn't mean you've failed as a parent. Sometimes events or a shift in brain chemistry cause depression, no matter how well adjusted your family is.

In children and teens, symptoms of depression can include: passivity or lethargy, irritability or hyperactivity, sadness that doesn't go away after a few weeks, a sad appearance, slowed thinking and poor school performance, low self-esteem, loss of interest in activities formerly enjoyed, changes in eating and sleeping patterns, persistent boredom and poor concentration, unexplained physical symptoms, thoughts of death, lack of expressiveness and withdrawal. The thing to watch for is a significant change in your child's personality or emotional tone. If the disturbing mood doesn't lift in a few weeks after a crisis event, it might be wise to seek help from a counselor or physician.

Accentuate the Positive

As you help your child manage his more troubling emotions, you can also encourage a more "positive" attitude. Look for opportunities to express pride in his accomplishments or his refusal to let the disability stop him. Admire his intelligence, determination, sunny disposition, good attitude, tolerance and acceptance of others, patience, kindness and love, sense of humor, flexibility and imagination. He should be acknowledged for finding ways to do things, setting goals and reaching them, and exploring his intellectual and artistic talents.