Early education about CF is critical. Children need to learn the nuts and bolts about CF including care requirements starting at about age three. This will probably come naturally because around the ages of three and four, children start to ask a lot of questions about everything. "Why is the sky blue?" "Why is a ball round?" Why, why, why... Of course when a child has CF, some of the questions will be about CF as well. "Why do I have CF?" And, some may ask, "Will I die from CF?"
That's what my two children with CF asked me, at around ages 4 and 6, as we were driving home from school one day. Here's how I answered: "Well, everybody dies of something. Some people do die from CF. Some die from cancer and others die in car accidents. We just don’t know the future. And, if you keep taking good care of yourself like you do now, you will be more likely to live a long time. The doctors are working hard on finding new medicines to help. So, there's a lot of hope for people with CF." Then, my son (the six-year-old who had asked) said, "Oh. Okay. Hey Mom! Can we stop at McDonald's?"
These "pivotal parenting moments" can take us by surprise so be prepared ahead of time. Our answers should be honest, calm, matter-of-fact, and hopeful. We can emphasize our children's role in good self-care. We shouldn't use words like "fatal" or "life-shortening" nor should we make empty promises. Use words like healthier rather than healthy, more likely to live a long time rather than will live a long time.
We need to try our best not let our own fears and worries show- both in our words and body language. Children pick up on (and tend to mirror) their parents' emotional cues especially when they are young. If you are having trouble controlling your own emotions about these tough issues, grief counseling might be helpful.
For younger children, use pictures to help them learn about CF. Books I like are: "Who I Am!" (from Genentech), "Mallory's 65 Roses", "Cadberry's Letters" (on amazon.com) and “Taking CF to School” (on amazon.com). CFVoice.com has great resources by age for children. There are also good videos available for young kids and I have them on my website at www.TipsForCFParents.com under "Teaching Children About CF." With older kids and teens, CFF.org has good videos to learn about CF. Watch them with your teen; you can learn together and be there to answer questions.
At some point we do need to address the issue of life-expectancy if it doesn't come up naturally. Hopefully this will be clarified by around the age of eight (around 3rd grade) depending on the maturity of your child. This might sound young to some of you but we want our children to hear this information from us, not on the playground or online. And sadly, this does happen. I've heard so many stories of kids who become terribly upset after hearing this from a thoughtless peer at school or on Facebook. It's best for parents to be in control of how this information is delivered.
One way to address this issue is to ask your child questions to open up dialogue. Some examples are:
-- “How much do you know about CF?”
-- “How are you handling it?”
-- "Is there anything about CF that worries you?"
When your child asks a tough question and you are at a complete loss for words, it's perfectly okay to say something like, "Wow, that's a really good question and I want to do a good job of answering it. Let me think about it and then get back to you in a little while." Just be sure you do- preferably over a big bowl of ice cream or other special treat that you both enjoy.
With a little awareness and preparation, you can make talking about these difficult issues a positive experience. Relationships can grow closer when people go through tough times together.
Note: Here is a link to a section in this website which will teach you how to explain CF to children including recommendations for language to use as well as books and videos for kids.
Link: http://www.happyheartfamilies.citymax.com/teaching_child_about_cf.html http://www.happyheartfamilies.citymax.com/teaching_child_about_cf.html
Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach and public speaker. She is also the co-author with Foster Cline MD of the award-winning Love and Logic book “Parenting Children with Health Issues.” For more information, see www.ParentingChildrenWithHealthIssues.com.
For more Tips for CF Parents, visit Lisa’s website at www.TipsForCFParents.com.
© 2011 by Lisa C. Greene and Foster W. Cline, MD. All rights reserved.