Another mistaken belief common among parents of children with progressive neuromuscular disease is that everything else must take second place to the care of the child who is sick.
A mother — especially if she still has feelings of guilt — may become totally absorbed in this child at the expense of her marital relationship and of the other children in the family. Inevitably her "self-sacrifice" leads to problems for all concerned, including the child with neuromuscular disease.
The importance of maintaining a home life that meets the needs of all members of the family cannot be underscored too strongly.
In the family that furthers the best interests of each family member, husband and wife have a marital relationship that in some ways takes precedence over their role as parents. They safeguard their relationship by giving themselves time to be alone with each other — for companionship, a joint social life, the pursuit of mutual interests and intimate relations. The children understand that there properly is a part of their parents' lives in which they do not participate.
A strong, sharing relationship between husband and wife is especially crucial in the family with a child who has a progressive neuromuscular disorder; it is the source of sustaining emotional support that acts as a powerful antidote to the stress each of them experience.
Grandparents and other members of your extended family may be able to give you and your spouse time to be together — or if you are a single parent, time to pursue your social life as a single person.
The brothers and sisters of the child with a neuromuscular disease must not be made to feel that their needs are disregarded. They should assist with the affected sibling but should not be deprived of outside activities.
Your other children will probably have feelings of guilt about being "normal" when their brother or sister is not, and you and your spouse will have to help them with these feelings. They will adapt well if no more emphasis is placed on the affected sibling's condition than is necessary.
Brothers and sisters ought never to be pressured to take care of the social needs of the child with a neuromuscular condition, who should be encouraged to develop his or her own friendships.
Children in all families get into arguments; the fact is that they learn how to get along with other children by first working, playing, and fighting with brothers and sisters. Short of preventing injuries that could result from their children's squabbles, parents should let their offspring work things out by themselves. The hands-off approach is a matter of special urgency in your family. Children with neuromuscular diseases need practice in becoming emotionally self-reliant and independent, since they cannot avoid dependence of a physical nature.
One more point about the "ideal" family — the family that is most stable, that protects its members, and that promotes their development. In such a family, the parents make the rules and set the consequences for breaking them. The parents also make the family's final decisions, although they may permit input into decision-making from the children. In the “ideal” family, children earn privileges by taking responsibility, but they are not thrust into adult roles prematurely.
My advice to parents is, you aren’t the only ones watching your child go through the effects of muscular dystrophy. Your other children are experiencing it, too, only they may not know how to handle what they’re feeling. Watch them, pay attention to them, and look for any signs that they might need some help dealing with their emotions.
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