Notes on Parenting

Insights for parenting babies, toddlers, teens, and young adults.

Thursday, May 3, 2012

Five Essential Steps to Parenting a Child with a Special Medical Need

Parents who have a child with a chronic illness or special medical condition are faced with some very difficult and special challenges. I, Lisa Greene, mother of two children with cystic fibrosis, spent many years learning how to deal with the special challenges of children who fight over food and medications. 

An integral part of parenting a child with a special medical need is following five simple yet effective steps – The Five Essential E’s: Example, Experience, Empathy, Expectations, and Encouragement.     

1. Example Kids learn far more from the examples we set than from the words and lectures we give them. The power of example is so simple yet so powerful once we know how to use it properly. 

Don’t say: “I hate flu shots!” 
Do say: "I don't like flu shots myself but I know it's important to protect me from dangerous diseases so I'm going to get one tomorrow afternoon." 
Don’t say: "Eat your vegetables!"
Do say: "I'm going to eat my vegetables because they make my body strong! Let's race!" 

2. Experience How do most people learn from experience? Mistakes! Mistakes are the building blocks of learning, wisdom, and creativity. Think of Thomas Edison - he made thousands of mistakes before he figured out the electric light bulb. So as parents, we need to resist the urge to criticize or fix our kids' mistakes. We need to encourage them to make mistakes and experience consequences when they are young and the price tag for mistakes is low.  This is how they will learn to make better choices. Mistakes are good and often short term pain for long term gain. 

Don’t say, "Don't eat anymore candy. You've had enough and you are going to get sick".
Do say, "Wow, you've been eating a lot of candy. Tell me if you’ve had enough.” 
Don’t say: “No, you’re not going out with that cold.”
Do say:  “You have a cold. Do you think it’s a good idea to go out?”
If the child says, “Yes, I want to go out” then you can problem solve together about how to stay warm and dry and what the consequences will be if the child gets sicker. 

3. Empathy Express sadness instead of anger when children make mistakes or misbehave. Don’t get mad or angry, don’t yell, lecture, or punish them when they blow it. Let them learn from their mistakes. Show empathy before delivering the consequences.  

Don’t say: "You broke my lamp with your ball! I've told you time and time again not to throw the ball in the house. Now look what you've done. Get in your room, now!"
Do say: "Oh bummer. This is so sad. You broke the lamp with your ball. After you clean up this mess, why don't you head into your room for a little while to figure out how you'll pay for a new lamp." 
Don’t say: "You forgot your medicine again! How many times do I have to remind you? You need to be more responsible!"
Do say: "Oh boy. You forgot your medicine again. How are you planning to repay me for the time and money it took to drive it over to the school?" 

4. Expectations Set high but reasonable expectations. Match expectations to the child. When kids have special medical needs, this is especially difficult but critically important. Set the expectation so that the child has to reach but can still cope with challenges and succeed and not fail. See and treat the child as a winner and a victor and not as a patient or a victim. Remember – children will always rise to your expectations. 

Don’t say: “You are always late with your medical treatments. When will you ever start doing things on time?!”
Do say:  “I know you've had things other than your medical treatments on your mind. But I know you realize how important they are. I assume you’ll get to them right away. Thanks! 

5. Encouragement- Maintain a positive “You can do it!” attitude. Be specific and positive with encouraging phrases when you speak to children. Don’t overdo praise or you risk turning a child into a praise junkie! Encourage your children to evaluate and think about their choices and the consequences of their actions. Encourage them with questions so that they are proud of themselves for making good choices.  This motivates them to continue to take good care of themselves. 

Don’t say, "I'm glad you listened to me and didn't go camping with a cold."
Do say: "Do feel good about your decision to stay home and take care of yourself?" 
Don’t say: "I am proud of you for remembering to take your medication on time.”
Do say, "Wow! You must be proud of yourself for remembering to take your medication." 

Inspiring children and young adults to make wise decisions as they meet the challenges of managing chronic illness is particularly rewarding.  It is a wonderful feeling transforming children from raving crazies into happy, willing and even cooperative supporters in their own health and wellbeing.  

Foster W. Cline, MD is a child psychiatrist and co-founder of Love and Logic®. Lisa C. Greene is a parenting educator and mom of two children with cystic fibrosis. Together they have written the award-winning book “Parenting Children with Health issues."  For free audio, articles and other resources, visit

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