Caring for a Child with Special Needs: A Family Perspective
As printed in the Fall 2002 edition of Young and Healthy
The Family Resource Center at Cincinnati Children's Hospital Medical Center offers a retreat for patients and families, with Internet and email access, private video viewing rooms and books for adults and children. In this peaceful environment, families find a place to relax, conduct personal business, watch educational videos and talk with child health professionals. The Family Resource Center can also help families find information related to health and pediatric diagnoses. For information, please call 513-636-7606.
As the parent of a child who is chronically ill, I have booked miles to doctor's appointments and hospitals, juggled meetings away from work, memorized waiting room magazines, discovered there is no tear-proof mascara, and negotiated endlessly with insurance carriers and HMOs.
The operative word here is "I," with all the isolation that solitary word represents.
The primary caregiver of a child who is chronically ill often engages in a host of activities and decisions that are, by necessity, done alone. That leaves me feeling isolated and my husband feeling shut out.
Most of our friends do not have children with chronic illnesses. We don't exchange stories of common activities, goals or achievements, and that creates distance between us. And while my employer tried to be sympathetic, over time, enthusiasm for making accommodations for me wore thin.
Not only does the "different-ness" of this world isolate us from others, research shows that families of children with special needs tend to isolate themselves. And that, the research proves, is one of the worst behaviors we can engage in.
Caregivers, and families of children with special needs, need support and outlets for their stress. Wherever we can find people who understand our world and worries is a good place to be, whether it's a support group, a sympathetic friend, or an employer who fully understands our child's issues and the demands on our time.
While seeing to my daughter's many medical needs, I often reflect how better to focus on enjoying her childhood before it slips away into an endless sea of parental worry. How do I normalize her childhood? How do I let her be a kid? How do I minimize the impact of the seemingly endless line of doctors on how she defines herself?
Yet all of these issues take a back seat to one powerful force: love. Our daughter has taught us not to begrudge typically developing children their gifts, and not to avoid children when they lack those gifts.
Fast or slow, a kid is a kid. She has taught us to be grateful each time someone acknowledges her as a person of worth through words or actions. She has taught us to strive to behave that way with others as well – which, it turns out, is a pretty wonderful way to live.
Author Marilyn Martin and her husband, Bill, have three children, aged 30 to 12. Their 12-year-old daughter has earned them "frequent flyer" status at Cincinnati Children's Hospital Medical Center as they address the health and developmental issues stemming from her premature birth. Marilyn now volunteers for the Family Advisory Council at Cincinnati Children's.
