Avoiding the Bumps in the Road:
The Essentials for Raising a Child with CF
by Lisa C. Greene
Parenting isn’t for whimps! Raising kids throughout their developmental stages is tricky enough; parents of kids with cystic fibrosis have to face additional challenges along the way.
When we know where the bumps and potholes are, it becomes a lot easier to avoid them! So let’s take a look at some of the challenges parents face when raising kids with cystic fibrosis and other medical issues. As you navigate family life with a child with CF, keep these tips in mind. They are in no particular order.
1. Treat your child with CF the same as your other children. People with CF are living longer, happy, rewarding, productive lives. They have families and careers. Don’t let discouraging statistics cause you to lower your expectations. Set high (but reasonable) expectations for schoolwork, chores, sports, extracurricular activities and good behavior.
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Model good problem solving, conflict resolution and coping skills. Children learn to cope with hard times by watching and learning from their parents. Parents who cope well, manage their frustration, communicate in healthy ways and express optimism are far more likely to raise kids who are confident, responsible, resilient, and hopeful.
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Take good care of yourself. Not only is this important to avoid burnout but again, it sets the model for the children. This means that parents must take the time for date nights and self-care. This also means that parents do not tolerate disrespect from the children (or from each other). They set healthy boundaries around the many demands that come with raising a child with special healthcare needs.
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Learn effective parenting skills. It is crucial that parents of kids with CF have good, effective parenting skills to rely on. There is no substitute for knowing how to defuse an argument, setting limits without causing power struggles, sharing control in appropriate ways, engaging in mutual problem solving and properly communicating about difficult issues. Nagging, yelling, bribing, threatening, lecturing, and punishing are not effective, especially where medical adherence issues are concerned.
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Do your best not to show frustration. Of course you will feel frustrated over and over again on your “parenting journey.” And that’s just fine! We’re all human. The trouble starts when we show it with anger, threats, warnings, and nagging. Charles Fay, author of Love and Logic says, “Anger and frustration fuel misbehavior.” So learn how to respond appropriately in frustrating moments. Everyone will be happier and more relaxed, especially you!
6. Make sure your child has accurate, age-appropriate information about CF. Give honest answers laced with hope when asked difficult questions. Your child will pick up on your emotions--both positive and negative--so be sure to get your own feelings of worry and fear under control before you discuss difficult issues with your child.
If your child doesn’t ask questions about CF, take the initiative to teach about CF including the possible consequences of poor self-care. At some point, your children will stumble across difficult information and it’s best if they’ve heard it from you first: presented matter-of-factly, lovingly and optimistically.
7. Don’t make your child with CF the focal point of the family. Your child is a part of the family, not the family. Don’t define or label yourselves as parents of a child with a chronic illness. We are all people first, with hopes, dreams, fears, needs and gifts.
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Don’t overcompensate for feelings of guilt. Keep your home a “guilt free” zone. Some parents try to “make it all better” with material things and not setting limits when it is appropriate to do so. This creates more problems in the long run.
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Do not overprotect your child. Don’t limit the activities of a healthy child with CF. Telling otherwise healthy children or teens with CF (mild to moderate lung involvement) that they "can't" do something because they have CF is the number one way to invite rebellion or depression down the road, especially if the forbidden activity is a popular one like swimming, playing outside, going on play dates, or visiting the playground.
10. Transition begins when your child is old enough to spit peas from the highchair! Transition is the process of preparing your child for independence in the real world. Many parents think that the teen years are the time to begin transition but it's best to start much earlier. Even toddlers can make simple choices about their care. Transition isn’t an event; turning 18 is. That’s when your child will move into the adult medical system and be expected to take full responsibility for his or her own care. However, your child needs to learn good health habits and personal responsibility much earlier.
So start early! The earlier you start shifting the responsibility for good self-care in small, age-appropriate doses, the more prepared your child, and you, will be for the big event: the 18th birthday party!
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Focus on thankfulness and the positive. Nurture a spirit of respect, cooperation and appreciation for each other and the blessings that are present in all of your lives. Make it a habit to count your family’s blessings together each day: jobs, a roof, food, good doctors and medications, advances in medical research, freedom, friends and family, compassion, love, faith, and hope. Always focus on hope because:
“Hope sees the invisible, feels the intangible, and achieves the impossible.” - Author unknown
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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.
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