As children become adults, they naturally want independence from their parents. But this can be tricky when children have severe disabilities, because parents often remain their primary caregivers into adulthood.
Instead, a transition may be made to interdependence. This may include ongoing physical and financial support from parents, but with boundaries, responsibilities and, as one child development expert emphasizes, “no victims, no martyrs, everybody has a life.”
Experienced parent-caregivers offer these tips for teaching independence skills from an early age:
- Envision a future for both your child and yourself. No one knows for certain what’s going to happen, so plan for the long run. Encourage children’s dreams and goals and take time for your own. Caring for the caregiver is an essential piece of teaching independence skills.
- Foster responsibility.Devise realistic chores; find age-appropriate ways to let them direct their health care; encourage participation in outside activities and volunteering.
- Help children get used to receiving and directing care from others.Outside assistance enables more independence for everybody, even when children want help only from their parents. Part of adulthood is knowing how to get help and how to deal with poor service.
- Don’t take over. Patience, patience, patience. Let children do what they’re able, even if it takes longer. As they age, ask questions but respect choices. Allow children to deal with the consequences of their mistakes. If they forget to charge their wheelchair batteries and get stuck at school, they’ll probably remember in the future.
- Get assistive equipment.Technology is the ticket to independence. Research your options. Once you know what you want, there often are creative ways to finance it.
- Push past the fear. Independence is scary for parents, but do it anyway. Says one parent-caregiver, “They say you should give your children roots and wings — in our case it’s roots and wheels.”
Excerpted from Parent-Caregiver Transition — Learning to Let Go , Quest, November-December 2004, ©2004, Muscular Dystrophy Association