Communication is key in parenting when one child is disabled or ill

Life as the sibling of a child with a disability or chronic illness presents unique challenges that can fuel a wide range of emotions, such as fear, jealousy and sadness.

But the experience also can offer valuable lessons about love, empathy and compassion that can help a child become a caring and responsible adult.

How can parents care effectively for a sick or disabled child while providing a positive and nurturing family environment and showing they love all their kids equally?

Clear and honest communication is critical, said Lacey Lemke, Psy.D., a pediatric clinical health psychologist at Amita Health Women & Children's Hospital Hoffman Estates.

Parents should take time to explain to siblings of a sick or disabled child the nature and severity of the illness or disability. Address any misconceptions they might have. Keep the explanation simple, and avoid medical jargon, especially when talking with young children. Put their minds at ease about their own health and well-being.

Talk realistically about what they can expect in terms of their sibling's needs and possible behaviors and their likely effect on day-to-day family life, Lemke said.

Let them know you understand how they might feel scared, angry or resentful about the situation. Reassure them that their needs, as well as family activities, will remain a priority, and that they will not be lost in the shuffle.

At the same time, emphasize how important it will be for everyone in the family to be caring, understanding and supportive toward each other.

Reinforce these messages regularly, and make sure to follow through on specific commitments to your kids, Lemke said.

To ensure you can do so, plan ahead and create a routine for your family. Get into the habit each weekend of mapping out the week ahead, including work and school schedules, child-care arrangements, transportation logistics, doctor appointments, grocery shopping, household chores and family activities.

"Make sure your weekly plan includes one-on-one time with your kids, whether it's talking about school, taking a walk, reading a book or playing a game," Lemke said. "Also allow time for the entire family to do something fun together. Involve your kids in the planning process so they know you're committed to addressing their needs and so they can understand the importance of family teamwork."

Although good parental communication, planning and follow-through can help siblings of a child with a disability or chronic illness manage the challenges they face, parents always should watch for warning signs that a sibling is struggling.

Depression, anxiety, diminished appetite, declining academic performance, or acting out verbally or physically all can point to deeper issues.

If these symptoms persist, parents should consult with their pediatrician and seek a referral to a behavioral health specialist.

In a similar vein, parents of a child with a disability or chronic illness must take care of themselves. It's easy to say and harder to do, but parents should strive to get enough sleep, eat healthful foods, exercise and make time for relaxing activities. Otherwise, it can be nearly impossible to manage stress and to marshal the energy or patience to communicate, plan and care for your family effectively.

Parents also should reach out for additional support if the strain of caring for a child with a disability or chronic illness begins to have a negative effect on them or their children.

Strategies such as arranging for home health care, hiring a housekeeper, or calling on relatives or other resources for respite care can free parents to spend more time with their other kids. Parents also can seek out sibling support groups and camps so their kids can share their experiences with other children in similar circumstances.

"Caring for a child with a disability or chronic illness can bring a family closer together, increasing its strength and resilience and giving siblings a heightened sense of empathy for others," Lemke said. "But it's a journey filled with potential pitfalls, and to avoid them, parents must communicate regularly with their kids, plan ahead, reassess their family's needs continually, and remain open to change and outside support."

• Lacey Lemke, Psy.D., is a pediatric clinical health psychologist at Amita Health Women & Children's Hospital Hoffman Estates. Children's health is a continuing series. This week's article is courtesy of Amita Health, which consists of 19 acute and specialty care hospitals Amita Health offers a variety of classes and events on parenting. For more information, visit www.amitahealth.org.