Ages and Stages: Cystic Fibrosis and the Elementary Years

by Lisa C. Greene and Foster W. Cline, MD 

The elementary school years are perhaps the golden years of parenting! Kids this age are excited about life and learning so they are easy to teach. They are like little sponges, soaking up everything. They want to please their parents, teachers, and doctors so they are cooperative. And they are just fun to be around. If you are tired of Candy Land, then you'll be excited about graduating to Monopoly!  

Parenting can seem deceptively simple because children this age want to please the adults in their lives. Yes, there are power struggles and frustrations over schoolwork, food choices, and medical treatments. But, for the most part, kids can be coerced into doing what adults want them to do. 

Parenting responses like bribing, nagging, yelling, threatening, reminding, punishing, and lecturing unfortunately may be effective in the short term with this age group. We say "unfortunately" because this lulls parents into a false sense of security. And when the teenage years roll around, parents are unpleasantly surprised by the discovery that these responses generally don’t work anymore and can actually cause bigger problems like rebellion. 

Over forty years of research shows that parenting style strongly impacts how children "turn out" as teenagers and adults. There are basically four parenting styles; three of which can result in behavioral and developmental challenges down the road. 

Authoritarian parents are strict, demanding, and not open to their children's point of view. Permissive parents rarely discipline, are indulgent, and want to be their child's "best friend". Uninvolved parents have few demands, little communication, and in extreme cases, can be neglectful. So that's the list of what doesn’t work. Luckily, with some awareness and simple tools, parenting style can change and become very effective for most children of any age. 

Research shows that an Authoritative parenting style is more likely to result in children who are happy, capable, and successful (Maccoby, 1992). Of course we want this for our children, so you are probably asking: "What is an Authoritative parenting style?" 

Love and Logic calls this style a Consultant Parent.Consultant Parents set clear limits and expectations but are democratic in their approach. They are warm, responsive, and are willing to listen and discuss issues. When children fail to meet  expectations, Consultant Parents are nurturing and consequential rather than punitive and focus on problem solving and teaching. 

So our goal as parents is to be a Consultant Parent. This is especially important when children have CF. How you implement the Consultant parenting style depends on how you were raised, your culture, values, and personality traits. Here are some practical ideas to help you along your way:

1. Use choices to set limits instead of telling a child what to do and when to do it. Kids need limits. But, just like adults, children need to feel like they have some control over their lives and bodies. Don't give children with CF the choice of whether or not they'll do their medical treatments but do give them some choices about how, when, and where. The more you share control, the less likely you'll have control battles.

2. Replace statements with questions. Here's what Jim Fay, co-founder with Dr. Cline of Love and Logic, says about this: " How can we make sure that our kids are doing their fair share of the thinking? How can we keep ourselves from getting pulled into working harder on their lives than they are? How can we help them become prepared for a world full of decisions and consequences? Replace statements with questions.”

Some questions you might ask your child with CF are:

• “When will you be doing your CPT today?” instead of "Do your CPT now."
• "What else can you eat today to get your calories in?" instead of "Eat all of your food."
• "What might happen to your lungs if you forget to do your breathing treatments?" instead of "Did you do your breathing treatments today?"
• "What is the best choice for your body?" instead of demands and commands.

3. Teach your children early on about their medical condition and be honest about the consequences of non-adherence. Early education is critical. Children need to learn the facts and details about their medical condition including care requirements. Seek out the resources that are available for your child's age.

Honesty is important. In order for children to make good choices about their bodies, they need to know the truth about the potential consequences for bad choices.  Which brings us to point #4...

4. Learn good communication skills for discussing difficult issues. Parents face a challenge when attempting to discuss serious issues like life-expectancy with their children. This issue is not easily addressed in a bullet point and we have written extensively about it elsewhere but here are some highlights:

Difficult news should be addressed in a loving and matter-of-fact manner. Be truthful, gentle, and hopeful. The key is to show curiosity and interest, rather than fear and angst, while outlining the consequences of non-adherence.

Generally speaking, if parents don’t show fear and angst, their children 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! Some examples of questions to ask are:

• “How much do you know about CF?”
• “How are you handling it?”
• “What can I do to make things easier?”
• “Do you have any questions about CF that you want to ask me?"

And be prepared ahead of time. Kids will pick the craziest times to pop off  tough questions like "What is sex?" or "Will I die from CF?"  So be ready!

5. Take advantage of teaching opportunities. Sometimes in our haste and getting things done, we forget to use everyday opportunities to teach our children. In addition to talking about the big issues, parents can "think out loud" to their children daily about what is going on within their bodies, why things are happening, and what decisions are being made. This is where the training about medical knowledge begins.  

6. Wise parents lovingly lay the responsibility for medical adherence on their child in small, age- appropriate increments at as early an age as possible. When we use choices and allow our children to make their own small decisions early on, they will grow in responsibility naturally.

7. Be sad, not mad, when your child makes poor choices. When we give our children some responsibility to handle their health care requirements, then we need to be prepared for mistakes. Kids are human. They will forget to take their medication. However, our children will learn from their mistakes depending on the way we respond to them. 

Responding with empathy, or sorrow, before imposing consequences is more effective than anger and punishment.  Anger and punishment cause a fight or flight response; it's fear and guilt based. Empathy causes children to think and learn from mistakes. Plus, they like us a whole lot better!

8. Allow your children to experience the consequences of their mistakes when the price tag is small. Wise parents raise kids who understand that their actions have consequences - both good and bad -which will affect the quality of their lives. Instead of trying to prevent mistakes, or fixing things when they happen, allow children to experience the natural consequences of their choices (as long as they don't result in serious or irreversible harm, of course). There’s no better teacher than the school of hard knocks. Start early; while the price tag for mistakes is much lower.

9. Focus on the positive. Catch your children when they do things right more often than when they don't. Use encouragement and positive responses like: "Wow! How did you remember to take your enzymes all by yourself?" or "I'll bet you're really proud of yourself for eating all of your lunch!"

10. Set a good example. Take good care of yourself. This includes taking the responsibility for meeting your own physical, mental, and emotional needs. When we take good care of ourselves, then our children learn from our example and are more likely to take good care of themselves, too.

So that's how we increase the odds of raising children who are responsible, confident, independent, and successful in all areas of life including around self-care issues. The elementary years are where the transition to adulthood really begins. 

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From the award-winning book “Parenting Children with Health Issues"by Foster W. Cline M.D, child psychiatrist and co-founder of Love and Logic, and Lisa C. Greene, mom of two kids with cystic fibrosis and parent educator. Visit  www.ParentingChildrenWithHealthIssues.com.