A child—whether typical or facing challenges—must eventually separate from parents, sooner or later, in ways both large and small. No one can remain a child forever. Not even a severely disabled child.
Only through separation can a person reach maturity—their own maturity, the maturity every human being deserves.
We must see this not as tragedy, but as gradual growth: the child becoming an adolescent, then a young adult.
The major separations of life come in adulthood—leaving home, eventually losing our parents. But it all begins in childhood. The great separations happen with less pain when, from infancy onward, we nurture each child's taste for independence and their capacity for it—always within the limits set by their particular disability.
It falls to us parents, us adults, to allow and support this evolution. It is not easy work, especially for parents of a dependent, struggling child who cannot—as other children do—demand independence early on. Most children grab a spoon, a hat, shoes—"I do it! By myself!"—and run with them. Can disabled children do the same? Should they? But we have obstacles we may not even recognize. Guilt, for instance. Guilt about our child's disability can push us to do everything for them, sometimes too much. We must learn to adjust our role: our child can do things, and others—different from us—can do things with and for them.
Another attitude that supports independence is the effort and courage to make plans for our disabled child. Parents need help from professionals and from society. But we can start with something simple: all the adults around the child should refuse to treat them like a baby. Use simple language, yes—but not babytalk. Show affection and approval in ways that match their age, not a younger age. Don't sit them on your lap or coddle them if you wouldn't do it with a non-disabled child of the same age. Choose toys they enjoy but not ones that are too young for them. Find games and activities that help them grow, that make them feel "big." Dress them and furnish their room in age-appropriate ways. One mother put it this way: "If I decorate my fifteen-year-old's room like a little child's, the caregivers who come to help will treat him like a little child."
- Read also: Letting Him Go by M.H. Mathieu
Helping a child, then an adolescent, then a young adult develop the independence they need to gradually separate from parents and build their own identity and maturity—this takes an inner attitude and matching behaviors. It is long, patient work that happens at home, at school, in daily life. As one mother said: "Building independence calls on the whole family—but it also calls on the school and all of us." This learning happens through the thousand small gestures of everyday life—eating, dressing, washing—just as it does for all children. But it is slower, harder, less certain. It demands patience, time, sometimes infinite patience, and occasionally a bit of imagination (simplified or adapted clothing, larger buttons, shoelaces replaced with velcro).
As children grow, independence also means taking charge: putting away their own clothes, organizing them; later, learning to wash and iron them—always within what is possible, which varies greatly from child to child.
As soon as possible, teach them to choose. We easily forget to ask a disabled child what they want, what they think, what they prefer. We choose for them. We decide. We act in their place. We don't give them the chance; we don't give them time. Getting an answer may be hard, but if we decide everything for them, they will never learn to be themselves. They will learn only to say yes, or they will retreat into silence.
Another condition for growing independence is active participation in family and community life—at home, at school, in places where people gather: sports, church, clubs, and more. Active participation means "doing with," not just watching. It means having a role, even a small one. It means learning responsibility toward others—and this can start young, with small things. Help at home: use imagination to find something to ask your clumsy child to do. "Can you help me with this?" "You remember everything—can you take this to Grandma?" Learning independence, having a role, building an identity, reaching maturity step by step—maturity that includes the ability to give to others—all of this, within each person's limits, seems to us an excellent goal for education, even if it is often very difficult.
The hard work pays off when your young adult can meet life's inevitable separations without great trauma.
- Nicole Schulthes, 2002