Elisha Bidwell, LMFT discusses her Parent Regulation Cheat Sheet and how PANS PANDAS caregivers can utilize it.
Click to download a printable copy of the Parent Regulation Cheat Sheet
Gabriella: You work with many parents of children with PANS PANDAS, as well as neurodivergent kids and kids with neurodevelopmental differences. We talk about the need for self-care and often that immediately puts parents in a place of stress with thoughts of “I can’t even get two seconds to myself. I can’t go out to lunch with friends because my kid needs me all the time. Or even I don’t think it will help, and I don’t even remember how to do that.” Do you see these Parent Regulation strategies as a form of self-care?
Elisha: I really understand that response to the phrase self-care. Most parents who have been on this different parenting journey tend to bristle at the idea of self-care because it evokes images of peace and relaxation and time away that just aren’t realistic. I think the way self-care is often presented doesn’t reflect the real limitations and experiences of parents of children with neuroimmune symptoms. I do think self-care is important. Crucial, even. But for parents experiencing this level of stress and burnout, we have to change the way we define self-care. Tending to your stress arousal can be done in small ways that add up to bigger, long term impact. Parent Regulation handout introduces some of these small ways to make big changes in your ability to find resilience in the midst of stress.
Gabriella: Can you tell us how your Parent Regulation Cheat Sheet can help parents and caregivers of PANS PANDAS patients? What do you mean by regulate? What does it do for our overall mental health and well-being?
Elisha: First, let me start with what I DON’T mean by regulation: regulation is NOT about gaining control over your emotions or nervous system. Regulation is the ability to respond to stress without flipping out or burning out. This is, of course, not always possible, especially for those whose environmental, societal, and structural stressors don’t allow space for rest and recovery.
All day long we experience countless stressors, big and small, ideally followed by moments of recovery. The stress response is actually very useful for caregivers, so I don’t want to vilify the hugely important role it plays in our functioning and survival as humans and especially as parents of children with challenging behaviors. That activation of stress helps us respond in emergency situations, find the right doctors, advocate for treatment, and keep our kids safe. But when caregiver stress piles on and accumulates without adequate opportunity to recover, it can be really challenging for our nervous systems to find rest.
The regulation strategies I highlight on the cheat sheet are types of self-care that take no more than a few seconds to incorporate into moments of your day, and what I love about these strategies is that they have a direct, cumulative impact on increasing resilience in your nervous system. That means, they help you build up the capacity to recover from stress more easily, or at the very least, better prepare you to endure varying degrees of relentless stress. The more often you practice, the more flexibility you create in your nervous system to weather the stress and experience more joy—even if the amount of stress you experience never decreases. You can see how these might have more bang for your buck than a trip to the spa.
Gabriella: How do they help us regulate?
Elisha: Most of these (except self-compassion and connection) are biobehavioral strategies, meaning they are things we can do (behavioral) with our bodies (biology) to soothe our nervous systems. Neurobiology has shown us that posture, relaxed muscles, deep breathing, and melodic vocalizations all communicate soothing to our nervous systems. This, in turn, helps to regulate heart rate and blood pressure, prevent or reduce inflammation, improve mood, and help you withstand stress.
Gabriella: Would we do all six strategies in one sitting?
Elisha: You really don’t have to do it like a routine, but you can. That could be a really nice 30-second to 5-minute practice for the beginning or end of the day. But you can also just use the visual reminder to prompt you to soothe your nervous system at various times throughout the day. Each strategy can be done in 10 seconds or so. I recommend printing the cheat sheet and hanging it up somewhere you will see it often. You can begin by experimenting with each one to see which works the best for you. My personal go-to is humming or singing, but I need a visual reminder to notice my posture. The most important thing is to remember is that daily practice, in whatever way makes sense for you, will grow the brain structures for regulation and over time, can add up to more flexibility in your ability to shift between a stress response and settling/recovery.
Gabriella: Is it important to practice these before we think we need them or can we dive right in and start using them?
Elisha: If you have the time to familiarize yourself with them, that can be helpful, particularly self-compassion which truly does take intentional practice. However, most people can begin noticing posture, relaxing their face and shoulders, taking deep breaths and humming, or singing immediately.
Gabriella: Would these be helpful tools for those with PANS PANDAS to learn too?
Elisha: Yes, they absolutely are. The nervous system and immune system are intricately linked to one another, so improving nervous system regulation has a direct effect on the functioning of the immune system. But even if your child is unwilling to engage in these tools, their nervous systems are benefitting from your improved regulation, so don’t sweat it if they aren’t interested. Approaching this with an agenda for your child to “achieve regulation” can backfire with kids who have highly tuned stress systems.
Gabriella: How do you suggest we encourage our loved ones with PANS PANDAS do these too?
Elisha: For kids, I tend to introduce these strategies in a more playful way. For example, I use superhero poses to teach about posture; pretend to be a cooked and uncooked noodle to notice the difference between tense muscles and relaxed muscles; play games involving blowing feathers or cotton balls to encourage deep slow, breathing; and singing together or singing competitions are a fun way to incorporate vocalizations. I even made up a self-compassion song I sing with my own child. The main takeaway for using these strategies with kids is: engage in play, incorporate biobehavioral strategies where you can, let go of your agenda for a certain outcome, and have fun.
Many of these child-friendly practices will be included in a course I’m developing called Nurturing the Sensitive Brain, a self-paced, online course that gives you knowledge and skills to help your child thrive in an overstimulating world—all while increasing your own resilience. Please visit my website for more information. Elisha Bidwell
Six Strategies for Regulation
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Posture Check
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Soft Face + Shoulders
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Take Slow, Deep Breaths
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Vocalizations
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Self-Compassion
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Connection
Posture Check
Gabriella: Okay, can we do a deeper dive into each of the six strategies? (basically reiterating what you say in the sheet and expanding as you can.)
Posture Check: Do you do this throughout the day? Is this particularly good for those of us who sit at our desk all day, slightly hunched over and jutting our neck out? Why is it helpful in helping us regulate?
Elisha: Yes, I would say this one is particularly good for those who sit at desks all day and anyone who spends a lot of time looking at their phones. Our spines contain the highway for nervous system communication between the brain and body. Think about when you are stressed and overwhelmed. How are you holding your body? Likely, you are hunched over which causes muscles to contract (sending messages to your brain that you are stressed and tense), plus your ability to take slow, deep breaths is impacted when your spine is bent. One exercise I do with kids and parents is to notice the difference in your breathing when you have a hunched posture versus a tall, lengthened posture. It is immediately apparent to them which way is easier to breath and just feels better.
Soft Face + Shoulders
Soft Face + Shoulders: How does relaxing facial muscles help regulate our response to stress? Is this something we could build into our nighttime routine when washing our face, for example?
Elisha: One branch of the nervous system that helps us feel soothed is connected with the muscles of the face. By relaxing those muscles, the nervous system gets the message that the body can rest. I love the idea of incorporating some facial massage into the nighttime routine. I have recently become interested in gua sha, a type of facial massage that uses a jade massage tool to release facial tension, among other benefits. With fingertips, you can massage your forehead, moving across to your temples, then gently circle under your eyes and back up across your brows and/or massage the joint on each side of your jaw while washing your face or applying moisturizer. Another way to help encourage your facial muscles to relax is to offer yourself warm, supportive touch by cradling your chin and jaw in your palms. Throughout the day, you can either provide yourself this supportive touch or simply notice where you feel tense and consciously try to relax those muscles.
Take Slow, Deep Breaths
Take Slow, Deep Breaths: What is the relaxation response and how do slow, deep breaths turn it on? Do you have suggestions for any visualizations to help with breathing?
Elisha: The relaxation response is what we experience when the parasympathetic nervous system, the part of our nervous system that allows us to rest and recover, is activated. When we make the out-breath longer than the in-breath, the parasympathetic nervous system shifts into gear and helps us to settle.
One of my favorite visualizations for breathing is called Roller Coaster breathing. We can all identify with feeling like this parenting experience is a bit like a roller coaster. You begin by holding up one hand with fingers spread and tracing the outside of your thumb with your pointer finger. As you trace up the thumb, you take a breath in, and as you reach the top of the thumb, hold your breath for a second, and as you begin to trace down the inside of the thumb, you breathe out, seeing if you can make the out breath longer than the in breath. Repeat this with each finger for a total of five long, slow breaths. This is the opposite of how a roller coaster actually works because usually the uphill is slower and the descent is fast, but I love how this visual helps us to slow down.
Vocalizations
Vocalizations: How does using your voice regulate you? How does singing, humming, or chanting send safety cues to one’s nervous system?
Elisha: Think about the way parents use their voices to soothe a baby with exaggerated intonation and rhythm—we often call this motherese or parentese. Neuroscience tells us that what we intuitively know is true: our voices speak directly to our nervous systems. While we often do this intuitively to soothe our children, we may not realize that our nervous systems respond to our own voices, as well. So, that same use of melodic, rhythmic, vocalization can be used to soothe ourselves. For deeper settling, try letting the sound originate in the belly and move up through the throat. Singing, humming, and chanting are also controlled breathing exercises, so not only are you benefitting from the sound of your own voice, you are also practicing deep breathing.
Some of our kids cannot tolerate hearing parents singing, so you may have to do this when you are alone or in the shower, but some kids may even begin to respond with their own vocalizations. My child and I have whole conversations in rhythmic song sometimes.
Self-Compassion
Self-Compassion: Many PANS PANDAS parents are deeply critical of themselves and don’t know how to be gentle with themselves. Can you talk a little more about the need for Self-Compassion? What are some ways we can self-talk less critically? Instead of thinking this, say this to ourselves….
Elisha: Research also tells us that self-compassion has a huge impact on nervous system resilience. Every time we can shift from self-judgment and self-criticism to self-kindness, we are building the brain structures of regulation. When we combine a biobehavioral strategy (like noticing posture, taking deep breaths or softening our facial muscles) with self-compassion, I believe the impact on the nervous system is multiplied.
According to compassion researcher, Kristin Neff, PhD., self-compassion is treating yourself the way you would treat a good friend. How would you respond to another caregiver who is struggling with unique parenting challenges? You would likely feel compassion and want to do something to help alleviate their suffering. Self-compassion means you apply that same kindness, understanding, and desire to offer care toward yourself. We all experience suffering, failure and imperfection. In those moments, it’s important to acknowledge that you are having a difficult time and ask yourself “how can I comfort and care for myself right now?” This takes a lot of practice, so I recommend resources on Kristen Neff’s website as a starting point. The self-study course I’m working on supports parents with developing a self-compassion mindset.
Connection
Connection: I connect with families all day and evening long online, but nothing compares with doing that in person. Can you talk a little bit about the difference between connecting in a chat group versus in person and its effect on our nervous systems?
Elisha: Humans are wired for connection. That is a non-negotiable part of our biological makeup. Connection with a caring friend or loved one helps increase our capacity to tolerate stress because, as the field of neurobiology tells us, our nervous systems can communicate soothing to each other. While chat groups are an absolute lifeline for many of us, without face to face connection, we are missing out on the ways in which our physical bodies are designed to support one another’s regulation. Some of the ways in which our bodies communicate soothing to other bodies are through relaxed posture, soft eyes, relaxed face, melodic and rhythmic voice, which all convey an energy of warmth and compassion, helping us to settle.
Our nervous systems can receive these messages of soothing from our own practice of these strategies and they can also receive and send cues of soothing to and from one another. That’s one of the reasons we want to prioritize this for ourselves because when we are feeling more regulated and resilient, our children’s bodies cannot help but settle, at least a little.
Elisha Bidwell is a Licensed Marriage and Family Therapist based in Austin, TX, specializing in supporting families of children with divergent and sensitive brains to thrive. Visit Elisha Bidwell’s website to learn about her courses and services.
Gabriella True
