YOUR OTHER CHILDREN

Then there are those other little people in your house. Giving equal time and attention to all your children is no easy task when one child has greater, unique needs.

Brothers and Sisters

At some point, your kids will need to know what's happening to their brother. As you do in communicating with the affected child, explain the disease, the medical treatments, the effects of the disease or medications, and the future to your other children in age-appropriate terms. Answer questions honestly and always express hope and positive expectations.

Sibling relationships can be very important and rewarding to boys with DMD.

Children under age 8 or so will have difficulty understanding that their brother has a disease unless he's frequently bedridden. They'll simply accept whatever's different about him as part of his identity. It will take time and maturity to comprehend that muscular dystrophy is a disease.

When they do accept that he's ill, they'll probably interpret this fact in self-centered terms and ask such questions as: Can I get what he has? Did he get it because he was bad? Is it because of something I did? Why can't he take some medicine and get well? Simple answers and reassurance are what they're seeking.

As your unaffected children get older, they'll have their own emotional responses to crisis points in the course of their brother's muscular dystrophy. They love him, and they'll grieve in their own way. At other times, they may distance themselves as they become more caught up in their own activities. You need to give them space and support for their personal, individual feelings.

Siblings can become very strong allies for a child with a disability during childhood and in the future. As kids, they'll protect him from others they perceive as hostile, and they'll help other children see him as an individual, not just a boy with a disability. You may find your other sons or daughters easily and naturally accept your son in ways with which older relatives may have difficulty.

Siblings of kids with disabilities often grow up to be especially tolerant and caring people. Their brother will enrich their lives in many ways. Be happy when you see them having a normal sibling relationship -- sharing, taking turns, helping each other, even arguing, as long as injuries are prevented.

A healthy child who can help you care for your son is a welcome asset. Brothers and sisters want to help their brother and their parents, but don't let that become their primary role in the family. Their own outside activities and interests, and their identity as individuals, must be nurtured.

Another issue that arises as your children get older is heredity. (For information about the genetics of DMD, see "DMD is Genetic, But . . .") Your sons who have the disease won't pass it to their sons, but their biological daughters will inherit the faulty X chromosome and become carriers who could then pass the disease to their sons. Your sons who don't have the disease aren't carriers and can't pass it on.

Your daughters may be carriers. They can be tested to see if they have the faulty gene on one of their X chromosomes. Bring up this topic either when your daughter raises it or when she's in her early teens. If she's positive for the faulty gene, she may wish to speak with a genetic counselor or other adviser as she decides how this fact will affect her future decisions about motherhood.

Balancing Children's Needs

Older siblings of boys with DMD often help their brothers with daily activities.

It's easy for a child with muscular dystrophy to become the hub of the household -- and for his siblings to feel they're always in the back seat. Given the physical, financial and psychological demands on parents, it's not unusual for siblings to be left to fend for themselves emotionally.

Your unaffected sons or daughters may try to become "perfect" and undemanding, in contrast to the brother who needs so much attention. Guard against labeling a child this way or rewarding a son or daughter for being no trouble. Be sure you don't send messages such as, "don't give me any trouble or make any demands. It's all I can do to take care of your brother." Children in this position often harbor a lifelong resentment of their sibling for taking so much of the parents' time and attention.

Some children are embarrassed to be associated with a brother who can't walk or who needs help eating or dressing. Some express open anger and hostility either out of jealousy for the attention he gets, or in misdirected frustration at how the disease is harming him. Others will "try on" some of the behaviors of their brother with muscular dystrophy, or act out in naughty ways to get your attention.

Be sure you apply discipline evenly, giving each child responsibility and consequences for bad or good behavior. (See "Overprotection and Discipline.")

To the degree you can, spend quality time with each child. Ask relatives to help with family chores so you can let each child know his or her needs are equally important and that you're interested in the things each child cares about. Do something very special for the nonaffected child now and then.

Studies generally indicate that a child's disability or illness has little negative effect on his or her siblings' self-concept, self-esteem, social competence or behavioral adjustment. Gender, birth order and age differences among the children have a slight effect.

Next... Family Life, Part 1