Talking With Kids About Illness

I asked the doctors, "So how do I talk to my children about their illness? What do I tell them when they ask questions about how long they'll live?" And they said, "Treat it just like when kids ask questions about sex- answer them on a 'need-to-know basis'." "Okay," I thought, "I can do that." I figured that my kids are young so I'll have plenty of time to figure it out.

But then, as we were driving down the road one day, a question came out of the blue: "Mommy, how does the daddy seed get into the mommy's tummy to make the baby?" I stuttered and swerved and mumbled something about needing to pay attention to the road so I'd have to get back to them on that. I thought, "A need to know basis??! What does a four- and six-year-old need to know about that?" And that's when I realized I didn't know how to talk to them about sex any more than I knew how to tell them that the disease they were born with, cystic fibrosis, has a life expectancy of 37 years.

Parenting is tough enough at times for just about every parent. But the situation gets even more difficult when a child has a serious health issue. What do you say to a child who struggles with life-threatening allergies, cancer, cystic fibrosis or diabetes? What do you do when parenting is truly a matter of life and death?

Parents must navigate a complex maze of medical information and cope with children who may be resistant, confused, or frightened. There are many difficult-to-answer questions that a child may ask: "Will my disease kill me?" or "Will it hurt when I go to the doctor?" or "What will happen if I don't take my medication?" Unprepared parents may find themselves at a complete loss.

Having now officially joined the "unprepared parent at a complete loss" club, I turned to an expert to answer these questions. Foster W. Cline MD is a gifted child psychiatrist and co-founder of Love and Logic. I knew if anyone had answers, he would. Here's what he taught me:

Set the example: Kids learn from our modeling. It's never too early to start teaching good health habits. Wise parents cheerfully model the behavior they want their child to learn: "Here's some cereal for you. Let's check if there are any peanuts in it. Nope! That's good. Peanuts can make you very, very sick. This is a no-peanut zone!" Remember, toddlers can understand what you say long before they can actually talk.

Teach your children early on about their medical condition and be honest about the consequences of non-compliance. One of the most challenging things for parents is to have a difficult discussion about life-threatening content in a matter-of-fact manner. The key is to show curiosity and interest while outlining the consequences (of non-compliance) and show no fear and angst about the issue. Generally speaking, if parents don't show fear and angst, then the child won't become fearful. Children pick up on our cues. Usually we don't know exactly how to handle these issues with our kids, so if we ask questions, they actually end up guiding us. If that method is good enough for therapists, it's good enough for parents! Some good questions to ask are:

"How much do you know about your illness?"
"How worried are you?"
"How are you handling it?"
"What can I do to make things easier?"
"Is there anything more you need to know?"

Obviously, we would explain things differently to a two-year-old than to a six-year-old. Start with the general and move to the specific as the child leads you. Concrete examples, word pictures and drawings are important communication tools for explaining things to young children. Condition-specific children's books can be very helpful. Hopefully, we would have had the whole thing clarified completely by around age six and the child would be fully aware of the situation.

"In summary," Dr. Cline explains, "What we say depends on the age of the child, the ease of the parent in dealing in a matter-of-fact way with reality laced with hope and upon the parent's religious beliefs. But it might be something along the lines of: 'Darling, God gives us a gift by not letting us know exactly how long our life on earth is. But one thing is for sure: some people pack years of experience into a shorter life, and some have a pretty vacant and hollow longer life. I guess what is important is not how big the bowl is but how much ice cream is in it! Your years could be shortened some because of your illness. On the other hand, lots of folks with illness live a nearly normal life span. But how important is that really? The thing that makes my heart sing is knowing that however long our lives are, our family packs it full of good experiences and gifts for others.'"

Dr. Cline answered my questions on talking with kids about illness so well that I decided to ask him one last question…

"When asked how the daddy seed gets into mommy's tummy, one might answer something like this: 'It's a special thing that they need to help each other with because the seeds are really small so it's hard to get them inside.' The trick is to be real general and see how specific the kid is... Does he keep asking for clarification or will this response (or something like it) do the job?

As children get older (but aren't quite yet ready for The Talk), you can fill in the details by saying something like: 'He uses his ____ (pee pee, etc.) The seeds come out of that and then they spill into the mom. But that can't happen until a person is a lot older than you so don't spend your time looking for seeds!'

And if we're really lucky, Mother Nature will help us along and we can say: 'Oh, look at those dogs! The seeds are being popped out of the boy dog and into the girl dog. Slick, isn't it?'"

Of course, that might start up a whole new round of tricky questions. Isn't parenting fun?

(Reprinted from Parenting Children With Health Issues with permission of the authors, Foster W. Cline, MD and Lisa Greene).