If you are a parent of a child with serious, long term medical challenges, you share so much with me. My son  was born with Hirschsprung's Disease and bilateral megaloureters, and it was tough for him until his ileal loop diversion was closed by permanent reconstructive surgery when he was 12 years old.  He is now 36 and in excellent health.  Except for the railroad tracks on his belly and his very strange-looking IVP films, he is practically unscathed by the hard years of his childhood.  I've learned a great deal from my experiences, and I thought you might find some of the advice that stems from it useful as you cope with parenting your own children. 

First, try to develop an attitude where you think of your children as kids first, with the same mental and emotional needs as all other children.  They are much more like other children than they are different.  As part of this attitude, I've found it so important not to coddle them.  Their everyday life should be, as much as possible, filled with opportunities to learn and experience life, with the goal of growing up just as other children expect to.  These kids will be often called upon to have great courage -- about dealing with frightening tests and procedures, about enduring pain, and about handling the stares and ignorant behavior of others.  Because of this, they need to learn self-discipline and be challenged by our high expectations, which will help them manage their own fears and hurts.  I don't mean that adopting a "stiff upper lip" attitude is useful--they need to have our support but also our confidence that they have what it takes to manage the difficulties they face.  Humor helps. When the body just won't work right or when it makes a mess, sometimes the best thing to do is have a little running joke about it.  Try to avoid that "oh, you poor little thing" attitude at all costs!

Second, learn all you can about your children's conditions and be an advocate for them within the medical system.  This takes skill and judgment, and does NOT mean that you should become difficult and argumentative with those who are trying to help your children.  We as parents of these kids often become more expert in the management of the condition than do the professionals -- because we have learned techniques and strategies to manage so many of the day-to-day challenges.  Keep notes and records so you can refer back to them.  This will help in diagnosing problems that may emerge and prescribing the best treatments, since the medical conditions may change as your children grow older.  And do what you can to figure out a regular routine, with the right supplies and equipment, to make it as easy as possible to perform the caregiving tasks our children need.

Third, be sure at least one other person, preferably more than one, knows how to perform the care that your children require.  Changing dressings and bags, irrigating tubes, assisting with physical therapy, preparing and giving meds, and all the other complicated elements of caring for these kids should not fall solely on one person. Parents who do this alone sometimes begin to feel that no one else can be trusted to do these things for their children, but that is a trap.  It leads to exhaustion and unhealthy over-focusing on their medical condition rather than on the whole children that they are.  It also is unfair to other children you have in your family, since of course they need your attention too.   Remember that as caregivers, we have to get enough rest and have occasional respite care for our children with challenging conditions. We just can't give what we don't have, so focusing on our own health and sanity is critical. Special camps for special-needs kids are wonderful experiences for them. These camps send a message to our kids that they can go out in the world. In addition, camps allow the children to meet other kids with similar problems, or sometimes with problems even  more involved than their own. The best of such camps include kids without special needs, too, where everyone can benefit from the activities and relationships that emerge.  When I was little, I was fortunate enough to go to a public elementary school for "handicapped" children (it was across the street from my house so I was eligible although not handicapped.)  This was a very positive experience for me in learning early that kids with braces, or wheelchairs, or special physical paraphernalia, are just -- kids. So much like me.  So much  like all of us.

Thanks for visiting my page. Carol Balliet

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 14, 2004