When a child is seriously, chronically ill, the ideal family model is much more difficult to achieve, but doubly important to strive for. Your efforts to prolong your child's independence by forgoing your understandable impulse to overprotect — as well as by emphasizing self-help aids — will have many beneficial effects, not the least of which is to lessen the possibility of future emotional and learning problems.
If your child is already doing chores, these responsibilities should continue. He or she should be disciplined as are other children in the family and also receive normal rewards for achievement.
Independence to a small child almost always means independence from parents. Beginning in the toddler years, children begin to give up their dependence on parents in favor of "grown-up" activities like buttoning their own clothes, tying their shoelaces, and exploring the world by themselves.
The child with muscular dystrophy or another progressive neuromuscular disease has the same need to move away from parents but is, in fact, becoming more dependent on them physically.
Look for opportunities to support children in moving toward independence, despite their increasing need for physical help. Teach them how to take charge of their own care, how to be assertive yet respectful in getting their needs met, and how to work with helpers other than their parents. Encourage them to be active participants at doctor visits.
Although you may feel protective, look for chances for children to experience the normal give-and-take of social interactions with other kids. Don’t be shy about hosting play dates at your house, where you can make any needed accommodations.
Actively seek out opportunities for children to experience feelings of competence and to express themselves through age-appropriate activities such as adapted sports, play groups, MDA summer camp, and creative activities like arts, crafts and music.
One way to support the deep-rooted need for self-reliance is to make sure children spend quality time with a supportive adult male role model — whether a father, uncle or family friend. When a child — any child — moves toward independence, male role models take on new significance in their lives.
Without diminishing the growing influence of women in positions of authority, children still have a need for males who demonstrate positive approaches to achievement, competition, aggression, autonomy and mastery. For children with neuromuscular diseases, these male figures are especially crucial, because often there aren’t as many opportunities for them to explore these areas otherwise.
Emotional problems in children with neuromuscular disease often are related to a lack of significant men in their lives and a lack of appropriate outlets for their normal urges of aggression and mastery.
Having outlets for feelings of aggressiveness in play and fantasy will benefit your child not only by providing scope for normal development but also by helping to maintain muscle strength and preventing a withdrawal into social and emotional isolation. Each parent has a part to play in striking the balance between protecting the child from failure in activities that are too demanding, on the one hand, and unnecessary dependency, on the other.
I think the most important thing my parents did for me when I was growing up was to treat me the same as my nondisabled siblings, with the same expectations, while still helping me deal with my physical limitations.