This article was originally published in “Lifelines for Health” from the CHES Foundation, fall, 2024.
In the bleeding disorders community, we have many, many conversations about how to help children with bleeding disorders to become more independent in managing their own self-care day to day. We want them to take responsibility for their health.
A worthy goal, right?
But at the same time, parents often tell me how hard it is to let go and give their kids more freedom. They tell me how they recognize the mixed messages they send their children: take responsibility for your bleeding disorder… but only when I’m watching.
Sure, it’s scary to give up control. Yet we’ve all sat through the sessions on learned helplessness, and we know our kids need space to learn and grow their self-care skills.
So what’s keeping us from letting go of control?
The Tyranny of “What If”
In the practice of cognitive behavior therapy, an approach that many therapists are well versed in, we talk to our clients about how constantly asking themselves “what if?” can increase stress and lead to anxious thoughts and feelings. We call that “what-if-ing.”
It’s human nature to ask the “what if” question. This question is very useful for planning purposes. Asking it helps us to think about possible outcomes and be prepared to handle them. A good thing to do at work, at home, and certainly as a parent of a child with a bleeding disorder.
However, therapists know that constantly asking “what if?” can lead to “analysis paralysis” and inaction, when someone becomes so fearful of what might happen that they stay stuck in one place. For a parent hoping to teach their children independence in caring for their bleeding disorder, this can lead to the mixed messages I talked about. “What if-ing?” can leave children feeling like “I want you to be more independent, but I am too afraid of what might happen if I actually let you sit in the driver’s seat.”
“What if-ing?” leaves parents anxious, while also potentially causing their children to fear their self-care. Anxiety can be viral in that way. If their parents don’t trust them, how can they learn to trust themselves?
First, Learn to Manage Your Own Fears
When parents ask me how to help their kids take more responsibility for their health, I encourage them to start by learning how to manage their own stress. Here are some ideas:
Name your fears. Parents often say that they are just generally fearful about letting their children become independent. I ask them to get specific. Just what are you afraid of? For example, having a bleed and no factor handy? The point I make is that if you don’t know exactly what you are afraid of, then you can’t formulate strategies to help yourself, and in turn your child, to be better prepared and consequently less fearful.
Create your anxiety management toolkit. Have a toolkit to manage your anxiety. What helps you to cope during stressful times? Exercise? Talking things out with a trusted listener? Sitting in a quiet place? Do an inventory of what helps you to cope during anxious times and then use your toolkit when you need to. One important tool is to talk yourself down, to self soothe. Here’s a start: “I’m human and I’m doing the best I can.”
Work on your own stress tolerance. Be a model. Again, anxiety can be viral. When you are anxious about your child’s health, you “telegraph” that anxiety to them, and they pick up the vibes. Another reason why it is important to learn to sit with your stress, to tolerate it, without falling apart. Use your toolkit. And be a stress tolerance model for your children.
Know when to take a step back. Be self-aware. For example, during those times when your worst fears get set off and you are on the verge of blowing up or breaking down. Know what pushes your button and, when you feel on the verge of losing control, take a step back. Mentally and even physically. Breathing helps, in through the nose, out through the mouth. Regain your composure and then re-engage.
Have your own support system. Who’s got your back? Line up the people in your life who can listen without judging you or trying to tell you what to do. When the stress builds up and you need an objective listener, give them a call. When you talk about what’s going on in your life – or vent if you need to – you also frame it out for yourself. That’s the magic of taking things out.
And Then, Proceed With Confidence
With your own anxiety well-managed, you can move forward with confidence in helping your child to become more independent:
Share how you feel with your child. Sit down and talk about your hopes and dreams for them, and how important it is for them to manage their bleeding disorder on their own. Share your own fears, what scare you the most, and ask them to work with you to help you feel more confident while they also learn to feel more confident. Remind them how much you love them. Make this a team effort!
Teach decision making skills. Talk with your child about how to make good decisions about managing their bleeding disorder. Come up with some hypothetical situations and discuss how to handle them. Talk about how to evaluate the options, their priorities, and decide how to move forward. This will help to illuminate any additional learning or resources you and your child may need to have in place. Give your child lots of encouragement for coming up with strategies that are realistic and that they can commit to.
Give choices but communicate consequences. Make it a habit of giving your child age-appropriate choices. For example, food, chores, recreation. Teach them about trade-offs, how choosing one option may close the door to another. Negotiate with them. And then stand back and allow them to experience the consequences. I am not suggesting life-threatening choices here, but daily life choices that can teach the importance of considering consequences without placing your child at risk. Most of all, communicate that every choice we make in life has a consequence, intended or unintended, and the importance of considering consequences before making a choice, and the impact of the consequences that may result.
Allow your child to fail… within limits. Decide where you can safely allow your child to go it on their own. No, not to place their health at risk, but to make reasonable health-related decisions on their own. Take a step back and allow them to then experience the consequence, positive or not so positive. Talk with them afterwards about why they made this decision, what they considered and didn’t consider, and the impact of their decision. Most of all, identify the lesson and how to use what they learned in the future.
Bottom Line: Allow Yourself and Your Child to FAIL
Are you familiar with the acronym FAIL? Basically this is the acronym for “First Attempt in Learning,” and refers to an initial effort to accomplish a task. The idea of FAIL is that learning is a process, we ramp up over time. As we progress in learning, we experience some ups and downs because learning is all about trial and error. The message of FAIL is to keep trying, to pick yourself up after an error, review what you learned, and keep moving! Let’s welcome our mistakes because errors teach valuable lessons that parents and their children can use to achieve mastery.
The FAIL concept can benefit you and your child. As a parent, you are learning to manage your own stress about your child’s health while teaching your child the skills they need to manage their bleeding disorder. This is a process. So be patient with yourself. As a parent, you can help your child by talking with them about the lessons they are learning. Give them lots of encouragement. And share with them what you are both learning about how they can best manage their bleeding disorder. The building blocks of learning!
All together now! Let’s all FAIL… UPWARD!!! You got this!
Gary McClain, PhD, is a therapist, patient advocate, and educator, specializing in helping clients deal with the emotional impact of chronic and life-threatening health conditions, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with each other and healthcare professionals, and to listen to their own inner voice as they make decisions about the future. His book, “The Power of Closure: Why We Need It, How to Get It, and When to Walk Away,” was published by Tarcher Perigee. His website is: JustGotDiagnosed.com.