Being Your Own Best Ally

Being Your Own Best Ally

produced with Courageous Parents Network by Kendra Wilde, Founder, Wild Peace for Parents

About This Magazine

It’s easy to view self-care as a low priority when your child is diagnosed with a serious illness. Your role as a parent and parenting partner has unexpectedly changed.

Your child has urgent and complex medical needs; you must manage appointments and service providers, and learn new information about disease and medical treatment—all while tending to the needs of other family members, work and/or other responsibilities.

Making time for yourself may be the first thing to go. But if you don’t see to your own physical and emotional needs, it will become much more difficult to manage all of your responsibilities.

Within these pages, you will find information on why self-care is important and how even small micro-actions count as self-care and will help you to build a toolkit to better manage stress.

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Introduction

For so many parents and caregivers caring for children living with illness and medical complexity, the stress and burden of caregiving can be overwhelming.

Practicing self-compassion can help us shift out of survival mode, allowing us to better deal with challenges and grow our emotional resilience. Self-compassion is about treating ourselves with the same kindness and understanding we offer our loved ones. It includes three elements: acknowledging our struggles, reassuring ourselves that we’re not alone, and giving ourselves grace. With practice, selfcompassion can enhance our well-being and bolster our caregiving capacity. (1)

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Parental Burnout Equation Living in crisis level and chronic stress takes a toll. We imagine we just need to get through the day or reach some endzone. But you can only function in survival overdrive for so long.

Burnout happens when stressors outweigh our coping resources. Burnout (and other problems) sneak up because often we don’t even realize we’re activated and imbalanced. We need enough coping resources to counter the stressors.

“SOS” - Survival Overdrive Syndrome This can be a catch-all term for all kinds of serious problems.

If you want to be the best parent, caregiver, and advocate you can be, you can’t be falling apart yourself.

Parental Burnout (2) is a specific condition resulting from enduring exposure to chronic parenting stress. It is characterized by: overwhelming exhaustion emotional distancing from one’s children a sense of parental ineffectiveness don’t recognize yourself

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Window of Tolerance “Window of Tolerance” is a term coined by Dr. Dan Siegel now commonly used to describe normal brain / body reactions to adversity and trauma. It’s our capacity to function in everyday life - well enough.

In our optimal zone - our window - we can regulate our emotions. We are able to learn effectively, play, and relate well to ourselves and others. There might be stress, but it feels manageable. This is the ideal place to be.

When stress and trauma shrink your window of tolerance, it doesn’t take much to throw you off balance and shift you into the Red or the Blue territory.

Hyperarousal (Red) You may feel anxious, angry, out of control, overwhelmed, panicked, fearful, hypervigilant, and/or tight muscles. Your body wants to fight or run away (aka Fight or Flight response). You feel stuck in overdrive.

Hypoarousal (Blue) Here you may feel spacey, zoned out, numb, frozen, depressed, emptiness, and/or dissociation. This is also known as shut-down or collapse response. Your nervous system is overloaded.

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Widen Your Window of Tolerance When we widen our window, we can more comfortably handle high degrees of emotional intensity and a broad range of emotions. We are better able to make the next right choices, to access our higher brain, to be our best selves.

The more coping resources we have, the more able we are to show up sturdy for our kids.

Self-Compassion We are conditioned to believe that being hard on ourselves helps us rise to the occasion. But it has the opposite effect: it activates the stress response. Self-compassion empowers us to be the caregivers and parents we want to be and is one of the most powerful things we can use to help ourselves cope.

The Surprising Power of Self-Compassion (1) Strongly related to mental health Supports emotional balance Protects from burnout and compassion fatigue Increases satisfaction with caregiving Makes painful and difficult circumstances more bearable Helps us forgive ourselves Enhances sense of connection Boosts resilience for future challenges

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Three Elements of Self-Compassion Self-compassion involves being warm and understanding toward ourselves when we suffer, fail, or feel inadequate, rather than ignoring our pain or cutting on ourselves.

1. Self-Kindness. Giving yourself the same warmth, support, understanding, kindness, and care you’d give a dear friend who was in pain.

2. Common Humanity. We tend to think “it’s just me” when we all experience challenges and times of suffering. But this is part of being human and that’s what connects us to others. This is about feeling a sense of community and not isolation during times of pain.

3. Mindfulness. This is about becoming aware of our experience. Neff says it’s about being able to turn toward your pain, at least a little bit, to start to give yourself compassion. It’s about stepping back to notice what your thoughts, feelings, and experiences are in the moment, without judgment. This can make it easier to figure out what the next best step is.

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Self-Compassion Break This informal practice can be done in about one minute and can make an almost immediate difference. You can intentionally call in the three components of selfcompassion in these steps: Mindful Recognize that you’re struggling. “This is hard.”

Common Humanity Remind yourself, “I’m not alone, other people feel this way.”

Self-Kindness Offer yourself kindness and acceptance. “I’m a good parent.”

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Fierce Self-Compassion In addition to being tender towards ourselves, we also need our fierce side. Neff describes fierce self-compassion as taking action in the world to reduce suffering. It includes: Protection Setting healthy boundaries. Channeling your mama or papa bear energy.

Providing This can mean putting your own needs over the needs of others at times.

Motivating This is about taking action to alleviate suffering; to stand up, to speak up.

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The Yin and Yang of Self-Compassion We need a balance of BOTH tender and fierce to feel whole, authentic, and well. The tender piece is to hold the pain, feel safe, and accept ourselves as we are. The fierce piece is the ability to speak up, stand up, and take action.

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Self-Care Redefined If self-compassion gives us that balance of tender acceptance and fierce action it also opens the door to self-care. Which is exactly what we need to stay resourced enough to show up sturdy.

Micro-actions Tiny steps “micro-actions” might be the only self-care that feels manageable in the current moment. Experiment until you develop a tool kit that works for you. The more tuned into ourselves we become (mindful, embodied), the better we get at knowing what we need. Eventually, you’ll have a range of skills that keep you afloat.

Practice, especially when the stakes are low. And as you’re ready, make space for more. Research shows tiny habits are the most effective way to make change; nothing is too small to start with.

Micro-action Ideas Calm overwhelm by grounding into your feet; dig your heels into the floor Help anxiety by tuning into your senses (pick 5 things you see; 4 sounds you can hear; 3 scents you can smell; 2 sensations you feel; 1 thing you can taste) Settle your system by resting with your legs up on the wall To de-stress, try a Physiologic Sigh: inhale through your nose, inhale again (2nd time) in another burst, and then release with a long, extended exhale through your mouth*

*This technique was rediscovered by Jack Feldman, Ph.D. and Mark Krasnow, PhD.

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BEING YOUR OWN BEST ALLY

How to Maintain Micro-actions Picking and doing a single micro-action (3) to get started is great. You want to make sure you pick something that feels doable so that you can maintain it and continue to grow your skills to keep your window of tolerance as open as possible.

Ways to try and maintain micro-actions include: Pick something that resonates, that you’d like to do Attach a micro-action to an already established habit Make sure to give yourself a “yay me” when you do it

Self-compassion empowers us to be the parents and caregivers we want to be.

Being kinder to ourselves helps us face difficult challenges with more balance and opens the door to vital self-care. Finding small micro-actions that feel doable can be a great start to developing a self-care habit. This will keep your window of tolerance as wide as possible so the stress of caregiving feels a little easier.

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Helpful Resources The following are resources that help you best your best ally and remind you that taking care of your own physical and emotional needs is not selfish.

CPN Resources Taking Care of Yourself Unit Self Care: A Parent's Guide to Taking Care of Yourself (as well as Your Child) Videos on yoga and meditation

Wild Peace for Parents Resources Free downloads to bolster and inspire you. Print them out and hang them up.

Micro-action menu A Little Easier podcast

Other Resources (1) Self-Compassion by Kristin Neff (2) Parental burnout: Moving the focus from children to parents by Moïra Mikolajczak and Isabelle Roskam (3) Tiny Habits: The Small Changes that Change Everything by Dr. BJ Fogg 12 BEING YOUR OWN BEST ALLY

About CPN CPN is a nonprofit organization that provides curated digital resources and programming to help caregivers advocate for children living with serious illness and navigate the illness journey. At the center of CPN are parent and clinician voices that illuminate the lived family experience and focus on psycho-social and emotional needs, regardless of diagnosis and without bias.

CPN resources include videos, podcasts, newsletters, a blog, social media posts, educational guides and learning pathways written for families, and a clinician portal offering materials for use in self- and colleague education. Programs include virtual events, and virtual and in-person presentations to clinician audiences, industry and patient organizations. CPN also partners with others to bring the family perspective to clinical research and a wide range of communication (or media) outlets.

Support CPN

About Wild Peace for Parents Kendra Wilde, a parent and creator of Wild Peace for Parents and the A Little Easier podcast, talks about what research has shown about the power of self-compassion and suggest small actions you can incorporate into your day.

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