Parenting isn’t for the faint-hearted! Raising kids throughout their developmental stages is tricky enough; parents of kids with health issues 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 medical issues. As you navigate family life with a child with health issues, keep these tips in mind. They are in no particular order.
Treat your child with medical issues the same as your other children.Medical advances are progressing rapidly. People with a wide variety of health issues are living longer, happy, rewarding, productive lives. Don’t let discouraging statistics today cause you to lower your expectations for your child’s tomorrow. Set high (but reasonable) expectations for schoolwork, chores, sports, extracurricular activities and good behavior.
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.
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. Learning to say “No” to requests for our time and energy is an important skill to use and model.
Learn effective parenting skills. It is crucial that parents and caregivers 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 care issues are concerned.
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!
Make sure your child has accurate, age-appropriate information about his or her medical condition. 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 his or her condition, take the initiative to teach about it including the possible consequences of poor self-care, delivered gently and age-appropriately. At some point, your children will stumble across difficult information and it is best if they’ve heard it from you first: presented matter-of-factly, lovingly and optimistically.
Don’t make your child with special medical needs the focal point of the family. Your child is a partof the family, not the family. Don’t revolve completely around any one child. Make sure all family members are appreciated for their unique talents, gifts, needs, and contributions to the family.
Don’t overcompensate for feelings of guilt. Keep your home a “guilt free” zone. Some parents try to “make it all better” with overindulgence. This includes “too much”: too much attention, too much nurturing, too much freedom and too much stuff. This creates more problems in the long run when children who have gotten “too much” just can’t seem to ever get enough.
Do not overprotect your child. Don’t limit the activities of a well-functioning child with special medical needs out of fear or worry. Telling children or teens that they “can’t” do something because of their medical condition is likely to invite rebellion or depression down the road, especially if the forbidden activity is a popular one with their peers. Allow your child to learn to set his or her own limits based on their unique abilities. Guide and empower your child; don’t stop them from living a full rich life to the best of their ability.
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. Waiting until then can make transition difficult and stressful. 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 eighteenth birthday party!
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
Lisa C. Greene, M.A., CFLE is a public speaker, parent educator and mother of two children with special medical needs. 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.pcwhi.com.