YOUR EXTENDED FAMILY AND COMMUNITY
PART 1

The rest of your family -- your parents, siblings, in-laws and other relatives -- can be a blessing or a burden when it comes to dealing with your son's muscular dystrophy. The same is true for your larger community -- the neighborhood, your religious congregation, your child's school system and other groups your family is part of.

You need a strong support system to help your immediate family deal with your child's illness. Ideally, friends and relatives should be there to support you with practical and emotional backup. Don't hesitate to call on relatives and friends as you need them and show them how to help you. But be sure you're getting the kind of help you need.

The Family's Emotions

Be sure everyone on your support team, including all family members, understands that your son's disability is only a part of his life and personality.

Other family members, particularly grandparents, go through their own grief process when they learn of the child's disease. Your son's grandparents will grieve for his disability, and for the pain their own child is going through. Simons warns that "this second-level grief often leaves them unable to offer the support that their son or daughter needs so much."

Because they don't live with the child every day, it will take grandparents longer to accept his disability as only a part of him. While you and your spouse are trying to focus on constructive solutions and positive expectations, your own parents may still feel strong denial, anger and sadness. They may keep recommending specialists, assuring you the diagnosis is wrong, telling stories about people whose children were seriously ill and even criticizing your decisions.

In addition, for older generations, having a disabled child was more of a social stigma than it is today, making it hard for your parents to see your son's disease as anything but a "tragedy." If others in your family have had DMD, your parents may remember a child who didn't have the benefit of today's greatly improved therapies, equipment and accessibility.

Add to these factors any other strains within the family and you could have quite a tense tangle. The most troublesome result occurs when your parents' feelings influence or confuse your own attitude, or add a burden to the demands you're trying to meet.

Dealing with your own, your spouse's and your children's emotions is quite a large enough load. You shouldn't also have to ease your parents' agony over your child's disease.

These steps may help grandparents and other relatives accept your child's disability:

• Educate them about the disease and the medical care your son is receiving.
  
  
• Encourage them to spend time with the child in various settings so they'll get to know him as a person.
  
  
• Emphasize that his parents are the ones who make decisions about his care. Kindly but firmly explain that their suggestions are appreciated but they must defer to you.
  
  
• Give them specific tasks to perform. Assisting you will help ease their pain, if they're wise enough to see that.
  
  
• Tell them what attitude you've chosen to communicate to your son about his disease and his future, and insist that they convey the same attitude. Ask them not to express their fear or sadness in front of your children.

These lessons may not be easily learned, but you must consistently reinforce them if your friends and relatives are to become more help than hindrance. If someone in your family continues to upset the household with negative emotions, or to argue about your parenting approach, you may have to limit his or her time with your family.

Your Support Team

One of the first things parents of a child with a chronic disease learn is that doctors don't have all the answers. Many doctors don't even realize what's involved in round-the-clock parenting of a child with DMD. Nurses can sometimes point you to available resources such as organizations, community agencies, support groups and reading material, as can your MDA health care service coordinator. (See Chapter 3 and Chapter 9 for more suggestions.)

In addition, a child with a lifelong, progressive illness like DMD needs many kinds of support besides medical care. You and your whole family need emotional, financial and informational support as well. The sooner you recognize that you can't go it alone, the sooner you'll be able to make your life run a bit smoother.

Start early to build a caregiving team. As the child's parent, think of yourself as a captain with troops to whom you can delegate some tasks. Enlist family members, friends, members of your MDA support group, or members of your church or synagogue.

As your son's abilities change, he'll need your help with dressing and other daily chores.

A small number of trustworthy friends and relatives can learn proper lifting, bathing and other care techniques to back you up. Hiring a trained health-care worker or personal assistant part time, especially as your son gets older and needs more help, is an option. (See Chapter 9.) If you can't afford regular help, maybe you can pay for some of the more difficult services, or schedule respite care now and then.

When you ask a friend or relative to help, be very specific about what you need and when you need it. Friends often say, "Let me know if I can do anything," and they usually mean it. But they won't know what to do unless you tell them. Make a list of things you could use help with and take them up on their offers.

It's impractical to teach many others how to provide daily care related to your son's medical needs, but letting friends or family help with non-caregiving chores can go a long way toward lowering your stress level and saving time. Your parents might be very willing to stay with the kids or have them spend the night so you and your spouse can have an evening or weekend alone now and then. In times of special need, such as hospitalization, friends and family can prepare meals, run errands, look after the other kids or feed the cat. Let them handle as many specific daily chores as you can think of; you'll appreciate not having to be bothered with them.

Perhaps you can occasionally trade child care duties with another parent of a child with DMD, allowing each of you some time apart from your children's demands.

Don't hesitate to ask someone to stay with your kids while you go to exercise class, take a walk or see a movie. There's absolutely no reason to feel guilty about this. Most friends will understand that giving you a break is just as essential as providing direct assistance to your child with muscular dystrophy.

Next... Your Extended Family and Community, Part 2