When one child is living with a chronic condition, other family members share in this experience because it affects so many aspects of daily life, including finances, meal-planning, household chores, and vacations, to name but a few. Children with a chronic illness may be feeling frustrated about their own limitations as well as guilty about how these limitations affect other family members. Brothers and sisters may have similar feelings. Parents carry the additional burden of maintaining responsibility for keeping the home together, with all of the fears and uncertainties that go along with that job.
And in the midst of these challenges, an elephant is wandering around. An elephant that everybody is stepping around but not talking about. Its name is “fear.”
It is only human to have lots of fears around your child’s chronic condition. After all, part of your job as a parent is to be aware of, and actively preventing, the “what ifs.” And chances are, you’ve already experienced some of them, or come close.
Fear can keep you motivated to do everything you need to do to stay on top of your child’s care. However, fear can also cause you to hold the reins so tightly that you may risk stifling your child’s self-confidence and keep them from getting actively involved in their own care.
And when kids with chronic conditions aren’t encouraged to develop independence, the result is stress. First, not making your child a partner in their chronic condition care leaves it all on you, and you need the help. Second, when kids feel unfairly restricted by their parents, they don’t feel normal, and can rebel, placing their health at risk and causing tension at home.
You, Your Child, and Independence: Finding the Middle Road
I know it’s not easy for a loving and concerned parent not to want to watch their children like a hawk. And I’m not asking you to take unnecessary risks. But I do think there is a middle road that can keep you feeling confident that your child is adequately protected, while your child can also feel more confident, and more in control.
If you have a child with a chronic condition, here are some suggestions to help you to help them become more independent:
Face your own fear factor. It’s only human to have fear about your child’s health. Acknowledge your fear. Don’t judge yourself for how you feel or try to make it go away by ignoring it. This is the first step toward coping with your fear.
Encourage your child to express his/her feelings. Start the conversation by simply asking how your child is feeling, along with reassurance that you want to hear whatever it is they want to tell you, even the ‘scary stuff.’ Give a few extra hugs and reassuring words.
While you’re at it, let your child know how you’re feeling. Make your home a safe place to talk about emotions.
Set boundaries but offer choices. Children with chronic conditions often feel as if they are bound by limitations, which can contribute to a sense of feeling less than other children. Provide your child with a sense of control by, where possible, allowing for some choices in daily routines, in diet, and in self-care. Explain the options and the boundaries, share information, and listen to your child’s concerns and preferences. Where possible, come to decisions together. Where appropriate, bring brothers and sisters into these discussions to make them more aware of his/her perspective and to give them an opportunity to make suggestions — don’t forget that they have needs of their own.
Teach all children to be advocates. Children with chronic conditions need to learn to speak up for themselves so that teachers and other adults outside the home are aware of any needs and limitations. They also need to learn to deal with the questions and comments that will inevitably come their way, as do their brothers and sisters. Teach your chronically-ill child how to be a self-advocate through role-playing at home.
Remember that not everything is a medical issue. Children are human beings, not medical conditions, and communications don’t all have to revolve around your child’s chronic condition. Lots of the issues that come up with kids and teens are developmental.
Also remember: The worst thing that can happen is not always the worse thing that can happen. It’s easy to get caught in the trap of “catastrophizing,” making every situation that comes up feel like an emergency. Take a step back and ask yourself: Am I looking at this through the lens of fear? And is this causing me to create the worst possible scenario that may not even be realistic? Keeping this in mind may help you a lot when your child pushes back on a limit that, well, it might just be time to relax.
Take care of yourself. Families facing chronic illness are constantly at risk for stress. Make sure your own needs are being met. Take care of your own physical well-being. And find a safe place to talk about how you are feeling, even the ‘bad stuff.’
Parenting a child with a chronic condition can be challenging. But don’t let the fear factor keep you from helping your child to build confidence and independence. Be patient. Take it one day at a time. And create an atmosphere where all family members communicate with honesty and compassion.