YOUR EXTENDED FAMILY AND COMMUNITY
PART 2

Attitudes

How can you ensure that everyone around your son treats him the way you want? Can you get relatives and friends to convey a positive attitude, be open about his disability, emphasize his abilities and give other messages that promote his self-esteem and adjustment?

The best way is by projecting those attitudes yourself. Most people will take their cues from you and your spouse, as well as your son and his siblings. If people witness evasiveness, sadness or unresolved anger in your family communication, they'll be confused as to what attitude they should project.

This doesn't mean you can't let your hair down and share your troubled feelings at times. But be wise about when you do that and with whom. There are times when you need support just for yourself, and you're entitled to it. But when you're with your son and other children, you must be a parent -- giving your kids the strength, encouragement and everything else they need.

In including others in your son's world, follow the same guidelines you do in communicating with your children, their teachers and other family members. Answer questions honestly, directly and simply.

Not everyone needs to know every detail about your son's condition. You can set limits on how much information you share. Gradually, close friends and family will gain a pretty good understanding of DMD, as you explain things that are relevant to their roles in the family.

From dirt bikes to dancing -- these young men with DMD have chosen to take some physical and social risks. Their parents' support helps them enjoy their activities.

But if, for example, a new acquaintance starts asking detailed questions about your genetic history, or your son's long-term prognosis, you may prefer not to take the time to delve into these details. You could say, "We choose to focus on our son's personality and any special needs he has today. We've found that's the best way for people to get to know him and help him."

As your son's disease becomes known, some friends and acquaintances -- adults and children -- may seem to disappear. This usually happens because people are uncomfortable with, and even afraid of, serious illness. Despite your explanations and their own knowledge, some people still carry a primitive sense that their own child can "catch" muscular dystrophy from yours or even a superstition that being around a person with a disability is bad luck or dangerous.

You may want to bridge the gap by opening a discussion of these issues or sharing MDA publications and other information from your doctor. In some cases, you'll decide the friendship just isn't worth it, especially if the person's attitude is disturbing to your child.

Other friends want to be there for you but aren't sure how to do so. With the best of intentions, some friends and relatives may say things you don't want to hear. Groping for a way to comfort you or explain the disease to themselves, they might say it must be God's will, or recommend miracle treatments they've found in magazine articles. With time, you'll learn not to let inappropriate comments bother you. True friends will ultimately play the role you need.

Some people aren't going to qualify for your support team, including those who:

• show emotions and attitudes incompatible with yours
  
  
• express extreme pity for you and your son rather than compassionate, positive support
  
  
• overprotect your child or discourage you from taking "risks" like going on vacations or letting your son play sports
  
  
• give unhelpful or bad advice
  
  
• ignore or refuse to follow your guidelines

If, after explaining what you need from them, some people still show these behaviors, find a way to leave them out of the picture. Caring for a child with DMD is hard enough in itself; there's no reason to allow others to bring new problems into your home. If close family members, teachers or others you can't completely eliminate from your life create conflict, minimize contact to the degree you can. Explain to your son that Grandma or Mrs. Jones just doesn't understand, and tell him he can ignore her when she says this or that.

Language

One area in which you may want to educate your friends, family and child's teachers is the language that's used in referring to the disease and disability. Certain terms are considered demeaning by most people with disabilities: afflicted, suffers from, victim of, cripple, not normal, confined to a wheelchair, wheelchair bound, dystrophic or anything that implies that someone is less than a whole person or is nothing but a burden to society. These terms have historical and cultural implications that emphasize an individual's weakness or dependency.

The preferable terms emphasize the person first and the disability as a characteristic: a child who has muscular dystrophy; a person with a disability; a woman who uses a wheelchair; or a wheelchair user. MDA calls a child with a neuromuscular disease a patient only when referring to the person's medical treatment. When he's at school he's a student; at camp, a camper; at home, a boy.

People who use wheelchairs frequently say they're "walking" down the street or "running" late. Don't be overly sensitive to this kind of language.

Let respect be your guideline. Language has power, and use of terms that emphasize the individual first helps reinforce that viewpoint.

Others might also appreciate these guidelines to behavior around a child with muscular dystrophy:

• Regard the person's wheelchair as part of his body space, not a piece of furniture that you're free to lean on or grab onto.
  
  
• For an extended conversation, sit down so you'll be at eye level.
  
  
• Don't jump in to "help." Ask if assistance is needed, or wait until you're asked.
  
  
• Talk with him as directly as you would with any child. Don't ask a parent what the boy should eat or wear or do unless you would ask those questions of a parent of any child his age.

Strangers

You can't completely control your son's world, especially if you want him to become independent and learn to negotiate for himself. When you take your child out in public, you and he may encounter rude or confused reactions from strangers: stares, whispers, clucks and murmurs of pity, disapproving looks, shock and recoil, ignorant and rude questions.

What's the best way to respond? Do you ignore the person? Do you stop and explain your son's disease? Do you lecture a stranger about sensitivity? Your mood, energy level and other factors may determine your response on each occasion. As one mother says, "Sometimes you just don't feel like explaining to a total stranger in an elevator."

Keep in mind that, whatever your mood, your child will pay close attention to your response. He'll pick up cues about himself from your anger, embarrassment or patience around new people. Your affection for him and pride in him should clearly show in your response. In public, treat him as you always do. You don't owe the world an explanation; you owe your child good parenting.

Not every encounter need become an educational opportunity, but your instincts may identify some that should. Let your child speak for himself, even when questions are directed to you. That reminds the newcomer to treat him like a person, whether or not he's using a wheelchair.

Most people with disabilities say they'd rather be asked a direct question than cope with an awkward silence. Other children are most likely to run up and say, What's wrong with him? . . . Why are you sitting in that chair? Their parents may be embarrassed at their directness. But the child deserves a simple answer to an honest, reasonable question: Jason's legs don't work so well so he uses wheels . . . Hi, I'm Sean. I've got muscular dystrophy. Do you like my cool chair?

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