Tips for Managing Stress Webinar

Rare & Resilient Webinar 2: Tips For Managing Stress

Rare & Resilient Webinar 2: Tips for Managing Stress


Tyler Bradley, Elmo, Walter Perez, Video Narrator, Caitlin Shneider, Colbie Caillat, Common, Video Clip


Caitlin Shneider  00:00

But today we are going to talk about stress management. I’m excited to be here with you all again for the second webinar in our Rare and Resilient series for this month. And so today is really going to focus on stress. And this is just an agenda of what we’re going to talk about today. So we’ll start with a quick recap of the highlights of what we talked about last time and then we’ll talk about stress and what it is, what it means, how it shows up in the parent-child relationship. We’ll talk about the foundation of stress management and then we’ll talk about some specific stress management coping skills.


Caitlin Shneider  00:45

And so I think I’m actually just gonna skip this, because I think we’re a pretty small group right now, and I have seen many names last week. So we’ll just skip through all of this and we’ll just go right into our review from last time. It’s really capturing the highlights of what we talked about. So we started by talking about getting on the same page and using the same language when we’re talking about pruritus. These three words: pruritus, itch, and scratching are often used interchangeably, but they mean different things and it’s really important to understand how they’re different. And so we talked about that pruritus is a biological process that happens in the body, which causes a number of different things and symptoms. One of those symptoms is itch, which is the sensation in our skin and that leads to the behavior and the response to scratch. And so it’s important to understand that those are three different things. And so we’re going to stay away from the term “itching”, because that’s kind of like a mix of the two. And so when I say “itch”, I mean the sensation in the skin. And when I say “scratching”, I mean the behavioral response. And we also talked about the connection between the mind and the body. And we talked about the fact that the way we think influences what we feel in our body, and what we feel in our body influences the way that we think. And we talked about that understanding this connection between the mind and the body might help us think about different ways of managing itch. And we specifically talked about this in the context of this idea of like a dimming switch on a light. And we talked about, there are primarily three types of factors that are associated with this mind body connection that influence the experience of pitch. And we talked about biological factors, psychological factors, and behavioral factors that all kind of work like this dimming switch that can increase the intensity and the frequency of itch or they can decrease the intensity and the frequency of itch. So just like we were talking about, we’ve referenced this model last week, and we’re going to continue to use it throughout the series. But pruritus is the first step, which leads to a number of symptoms, one of which is itching, that itchiness. And then this leads to the scratching. And these psychological, biological and behavioral factors play a role in turning up or turning down the itching, the itchiness and the scratching. And so they’re not the on/off switch, but they play a role and influence that experience. And as we were looking at these biological, psychological and behavioral factors, one of the things that stuck out to us was how common stress was in influencing that experience of itch. And that there are biological, psychological and behavioral parts of stress that influence our experience of itch. And so this was what, what we thought about as a good place to start, given how common this is in influencing our experience of itch. And so in thinking about that, when we’re thinking about the role of stress, it has these biological, psychological and behavioral factors that when we’re stressed go up. And that, you can see on the red arrow, leads to more itchiness, that arrow is up. And the same thing for scratching, that goes up as well. And so we talked about that potentially reducing stress might be a way for us to turn down some of the itchiness and that’s where we’re starting.


Caitlin Shneider  04:41

 And so, again, the idea of getting on the same page, I want to first talk about what is stress? What does that mean? When we think about stress, we understand it as an event or an experience that expends the resources of an individual. So it’s something in your life or an experience in your life that is using up your physical and mental resources. And I think about it kind of like a child’s piggy bank, in that we have a limited number of tokens in our piggy bank at a given point. And every time that we encounter a stressor or something comes up, it takes tokens or money out of our piggy bank. And each stressor might take a different amount of tokens. Some might take five, some might take two. And we want to make sure that we have enough tokens in the piggy bank when we face those stressors. And if we don’t, we might hit a point where we don’t have any tokens left in the piggy bank, which means that we just don’t have the resources to be able to cope with all the stressors that are happening. And so the goal of stress management is really to minimize the number of tokens that we’re giving out and losing. And in that way, reducing the negative impact that stressors are having on us. And we know that living with a chronic disease or parenting a child with a chronic disease is an ongoing stressor. It is constantly taking tokens out of the piggy bank, by going to the doctor, by following doctor’s recommendations, by problem-solving challenges that come up related to the disease. This is constantly a stressor for many of you, as you likely know. And there are also just general life stressors as well. They can be major life stressors, they can be minor life stressors. And all of these things together are taking tokens out of our piggy bank. And we want to be able to conserve what is in there and prevent ourselves from hitting a point where we don’t have any tokens left to give out. And so I think that’s a helpful framework for us to think about when we’re talking about stress management. So when we say that we are stressed out, or we’re stressed, this is often referring to the point at which we are running out of tokens, or we don’t have any more, we’re at zero. And that means we don’t have any or we barely have enough resources to cope with everything that’s going on and all the stressors in our life. And it’s important to acknowledge how being stressed for resources exists within the parent-child relationship. Because as you likely know, your child’s experience does not exist in a vacuum and your experience does not exist in a vacuum. We know from research that the parent experience and specifically parent stress influences the way that they respond to their child, right. So when a parent is stressed, that’s going to impact how they interact with and respond to the child. And that’s then going to impact the child’s experience, which is in turn, then going to impact the way that they respond back to their parents. And so this becomes a cycle that continues over time. And as it continues, the intensity of stress and the amount of tokens that were taking out of that piggy bank just go up and up and up and up and up and up and up. And so we can think about this as something that again, is influencing each other. The parent can start this or the child can start this. And so an example might be let’s say that mom is stressed out. So we’re mom is feeling high levels of stress. And maybe baby is playing in the room and accidentally knock something over and breaks break something. And because mom is  stressed, because mom is stressed, she might automatically shout, which then is going to startle or scare the baby, then baby starts crying. And that’s going to then have mom feel more levels of stress. Mom is going to have to go get the baby, rock the baby. Baby continues to cry, mom feels more stressed. And so it’s a cycle that goes round and round. And the same thing can be true for baby and baby stress will be different than parents stress and we’ll talk about that. But it can be that the baby is feeling stressed and that influences the way that the parent responds to the child. And so we’re going to talk about ways to reduce stress for kids. Again, within the lens of trying to find ways to turn down the itch. And it’s just as important, if not more important, for you all as caregivers of kids that experience chronic itching to also be able to manage stress given how much of a role and an influence that you have on their experience as well. So when we’re talking about these stress management skills today, it’s for both you as a caregiver, and also for your for your children.


Caitlin Shneider  09:54

And so when we think about stress management within that parent child relationship, we want to think about out who is doing most of the stress management across child development. So if we look at this picture together, this graph, you can see on the bottom, that I have different child development stages. So infant, toddler, child, this is going up, kids are getting older. And then on the y axis is just representing percent, so zero to 100%. And we can see that at the infant and toddler level, this is representing how much of the stress management they’re doing. It is pretty low. Infants and toddlers are really, at a different stage. They are learning how to understand language. They’re learning how to produce language. They’re learning how to control their bodies. So their ability to be able to learn a coping skill, figure out when to use it, and then implement it effectively is just simply not going to happen. And so they are not able to do a lot of this, which means parents will have to do more of this, and we’ll talk about that. But as the child gets older, they’re able to do more of this. So we can see that their responsibility goes up throughout child development. And if we look at teenagers and emerging adults, they’re doing a good bit of this. And that’s really consistent with what we would expect from a teenager. That’s a time that’s really characterized by increased management of their disease. Typically, we’re encouraging teenagers to take on more disease management responsibilities. They want more independence from their parents. So this is really consistent with what we would expect. And this blue line represents the responsibility for the parent and stress management and notice that these are flipped. So just as we were saying, infant and toddlers are not able to do a whole lot, that means that parents are going to be doing most of this. And as the child is getting older and able to do more, this blue line is coming down and they are doing less. Noticing that we’re not going all the way to zero. Parents are playing a role even when their children are older, so it’s important to acknowledge that too. But this line is trending down throughout child’s development. And if you put them on the same graph, you can see there’s a point at which they cross. And that’s right around adolescence, those teenage years in which the child or the teenager is starting to do more of this and the parent is doing less. But I think it’s important to acknowledge that it’s important for both the child and the parents to be doing stress management skills. And it’s going to change and look different at different points in child development. So if we’re thinking about stress management, and we’re thinking about the mind body connection, we know that to be able to take care of our mind, we need to take care of our body. And so the foundation of stress management is going to be caring for our body. And again, when we’re talking about these skills, and these strategies, this is applying to both you as a caregiver, but also for your child. And so given this link that we’ve talked about between the mind and the body, we want to do these things. We want to be able to treat illness symptoms. So for your child with PFIC, that means taking medicine medications as prescribed, seeing their doctor regularly, reporting any new symptoms to their doctor. And the same for you. We also want to make sure that we have balanced eating and hydration. We know that what we eat and drink and when we eat and drink can really affect how we feel and our mood. And so I’m guessing many of us have noticed that there are certain foods that make us feel more energized and make us feel well. And then there are also certain foods that make us feel really tired or actually unwell. And so it’s important to make sure that what we’re eating and drinking is making us feel energized and well. And you’ve on the other side of that too, also probably noticed that not eating at all can affect our mood. And I think many of us have used the last time the little reactions….. give me a little thumbs up if you’ve ever felt hangry before.


Caitlin Shneider  14:18

Hangry. Have you heard of that word before? Yes, Walter knows. Yeah. Okay. So what was that? We’ve….. hangry is a perfect example of how not eating impacts our mood. And so we want to make sure that we’re prioritizing balanced eating. Just like we’re prioritizing balanced sleep. We want balanced eating, we want balanced sleep. And so that means making sure that we’re not under sleeping, which is often what we talk about, but we’re also not over sleeping. We are sleeping an amount that is helpful for us and I there’s a lot that we could talk about in sleep and I’m happy to spend some more time talking about sleep at the end, if that’s of interest to folks. And then the last thing is making sure that we’re doing some sort of movement or exercise every day. I think many of us could agree that sitting all day, we don’t feel the best and our mood is not the greatest at the end of the day. And so making sure that we have time to move around and move our bodies in a way that feels good can improve our mood, and also our ability to manage stress. And so looking at these things, it’s easier said than done, right? When we’re busy, these are the first things to go. How many of us have, you know skipped lunch because our day was so busy, or we slept five hours instead of eight, because we had to stay up late working? It’s very difficult to do on a day to day basis. And from a stress management perspective, it’s really important to prioritize these things, because this is our foundation for being able to respond to stressful events that happen. And so I think about this as by doing these things, treating our illness symptoms, eating and drinking in a balanced way, sleeping in a balanced way, exercising, we are adding tokens to the piggy bank. So we’re increasing our reserve to be able to cope with stressors that are happening in our life. 


Walter Perez  14:18



Caitlin Shneider  16:26

So we’ll transition now to talk about some of the specific skills and we’re going to focus on primarily biological and psychological aspects of that mind-body connection. We’re going to talk about behavioral parts in a later webinar. But we’re really going to focus on the biological aspects of stress and the psychological aspects of stress. And the skills that we are going to look at in particular are here on the screen. So diaphragmatic breathing, and progressive muscle relaxation, which are going to target some of the biological aspects of stress, and guided imagery and mindfulness, which are targeting the psychological aspects of stress. So when we think about feeling stressed, we talked about the idea of a certain response that kicks off in our body, which was called the fight or flight response. So when we’re stressed, that gets turned on. And when that happens, a number of things happen in the body, one of which is our autonomic nervous system kicks on, which does these three things, our heart rate goes up, our breathing pace goes up, our muscles get really tense. Other things in our body turn on that lead to a production of a number of hormones, which lead to inflammation, and leads to increased itch signals going to the brain. And so we want to think about what of these things might we be able to change. And so with these stress management skills, we’re really trying to trick our mind and our body into thinking that we are relaxed by changing some of these things. So we can’t change our heart rate, but we could change how quickly we breathe, and how tense our muscles are. And so starting with our breath, when we are most stressed out, we typically breathe much more quickly, right? When we’re stressed…..<pants>>>…. right, our our heart rate, our breath goes up, and that affects our heart rate. So increased stress is associated with fast breathing. And on the other side, decreased stress is associated with slower breathing. And what we know is that if we can learn to purposely breathe more slowly and more deeply, just as I was saying, we can also lower our heart rate. And so if we are able to slow our breathing, we can tell our bodies that we are more relaxed and turn off that fight or flight system and turn on the relaxation system, which will decrease the itch signals that are sent to the brain. So this skill is called diaphragmatic, or deep breathing, which is a little bit different than the way that we typically breathe in a couple of ways. One of which, as the name says, we’re breathing into our diaphragm, which means that we’re breathing more deeply than we do. Typically when we typically breathe normally, we’re breathing into our lungs. And so we want to take deeper breaths that go past the lungs. We also, when we breathe normally, typically our inhale and exhale is about the same. But when we do deep breathing, we want to make sure that our inhale is shorter, and our exhale is longer, which slows the heart rate down. And oftentimes, when we do this exercise, we will put one hand on our chest and one hand on our stomach, which I don’t think you can see in my video. But what we want to make sure is that as we’re doing this skill, the hand on our stomach is moving up and down, telling us that the air has gone all the way to the diaphragm. When we breathe normally, typically, we have more chest breathing, or shoulder breathing. And so those are ways in which this is a little bit different. And so I have a number of handouts that I think have already been posted online, we’ll recirculate them, that go over ways to do these skills and information about them. So this is just a little bit of a clip of how to practice this skill. And I won’t read everything, but just as I was saying, we want to make sure that we’re putting a hand on our chest, a hand on our stomach, and we are taking air in through the nose, and then exhaling through the mouth, making sure that that exhale is longer than the inhale and repeating that over and over again. And for each of these skills, we’re going to talk about what they are, how they’re helpful, how to do them, but then also ways to adapt them for children. And so I’ll show you some videos and ways to do that, for this and for all the skills we’ll talk about today. To be able to practice this for yourself, there are lots of great resources online. So if you just go to YouTube and type in diaphragmatic breathing or deep breathing, for teenagers, or for adults, you’ll find a number of videos that can guide you through this. That can be helpful as you’re learning these skills and then can do them on your own. So when we teach kids diaphragmatic breathing, we call it either belly breathing, because that hand on the belly is moving, or we can call it square breathing and so Colbie  Caillat and Common actually made a video with Elmo about how to do belly breathing, which I’ll show you as well.


Common  22:25

<<singing>> ……Sometimes the monster that’s inside you is a monster that is mad. A monster who is angry, it’s the monster who feels bad. When the monster wants to throw things and your monster wants to shout, there’s a way to calm your monster and chill your inner monster out.


Elmo  22:54

<<singing>>….. Now Elmo feels like himself again


Colbie Caillat  22:54

<<singing>>……Belly breathe gonna breathe right through it. Belly breathe this is how you do it. Belly breathe gonna breathe right through it. Belly breathe this is how you do it. Put your hands on your tummy now you’re ready to begin. Put your hands on your belly and you slowly breathe in. Ba ba breathe belly belly……… Ba ba ba ba breathe belly belly breathe….  Feel your belly go out and in and in and out and you start to calm down without a doubt. Feel your belly go in and out and out and in


Colbie Caillat  22:55

<<singing>>…..Belly breathe…. gonna breathe right through it. Belly breathe this is how you do it. Ba ba breathe belly belly Ba ba ba ba breathe belly belly breathe


Common  23:28

<<singing>>…. Your mad monster may appear at any time and any place And that mad monster will make you make a mad monster face He makes you want to push he makes you want to shove There’s a way to calm that monster bring out the monster love!


Colbie Caillat  23:49

<<singing>>….. Belly breathe gonna breathe right through it. Belly breathe this is how you do it. Belly breathe gonna breathe right through it. Belly breathe this is how you do it. Feel your belly go out and in and in and out That’s what belly breathing is all about!  Feel your belly go in and out and out and in


Common  24:05

<<singing>>…..And now I feel like myself again.


Colbie Caillat  24:09

<<singing>>….Belly breathe gonna breathe right through it. Belly breathe this is how you do it. Belly belly breathe. Belly belly breathe


Common  24:15

<<singing>> Everybody just breathe!


Caitlin Shneider  24:23

We won’t watch it again haha. But that’s one example of a resource that is out there. There’s a number of them that exist of kid friendly ways to help them understand this skill and to practice it. And so I’ve included two other ones. We’re not going to watch these whole things but just as examples of ways to use kids imagination so one of them is thinking about that inhale as smelling in a flower. Sometimes when I work with kids, or teenagers, we’ll talk about smelling in like all the air particles of their favorite food or like freshly baked cookies that are in the oven. Like smelling all of that in and then thinking about blowing out a candle on a birthday cake on the other side of the room. So there’s a little video of that visual


Video Clip  25:26

<<music playing>>….


Caitlin Shneider  25:31

And it just loops, but can be really helpful for younger kids to help them. And the other thing that we talked about that deep breathing or diaphragmatic breathing can be called is square breathing. And so it can help kids to think about a shape. So I think on the handout, it also calls it triangle breathing, but it just helps them have a little bit of guidance to shape their breathing. So this is an example of another video that can guide


Video Narrator  26:01

<<sound of water bubbling>> Look! Here comes Finny the fish. Hi, Finny. Do you know what makes Finny feel happy? He likes to do square breathing. It’s really easy. Would you like to do some with him? The first thing you need to do is to sit or lie down so that you’re feeling nice and comfortable, then place your hands on your tummy. Okay, let’s get started. When Finny goes up, you breathe in through your nose. And then you hold that breath. When he goes down, you breathe out gently through your mouth. And hold again. Great. This time, let’s do it together. Breathe in and hold. And then breathe out.


Caitlin Shneider  27:04

So that’s another example of kid friendly videos and resources that are out there to help them with some of these skills. So that is one way that we can work on the biological aspect of stress and thinking about reducing that to be able to turn down the intensity and the frequency of itch. So another thing that we talked about, remember, we were talking about increased heart rate, fast breathing and muscle tension, the three things that are associated with increased stress, which means increased itch. So can’t change our heart rate directly. But if we slow our breath, we can slow our breath and lower heart rate. The other thing that we can do is we can relax our muscles. So we know that when our muscles are tense, we feel more stressed. I think many of us know this. And when our muscles are relaxed, we feel less stressed. And just like we talked about for the breathing, being able to relax our muscles is a way that we can trick our body into thinking that we are relaxed and that we are not stressed, which can allow that fight or flight system to turn off, and therefore stop sending as many signals of itch to the brain and turn on the relaxation systems. So this skill is called progressive muscle relaxation, or PMR for short. And this is a way to relax by slowly tightening and releasing muscles, sort of one muscle group at a time, one muscle at a time in the body. And by doing this, you can feel the difference between tension and relaxation. And so that discrepancy helps and it also loosens and relaxes the muscle to be able to help shut off that fight or flight system. And so, as I said, we want to tighten the muscles. We want to make sure we’re not tightening them to the point that we’re straining them. And this is a skill that we often do with deep breathing. Alot of the ones that we’ll talk about use deep breathing as a way to go with this other skill. And so again, I’ve included a little clip from that handout about ways to do progressive muscle relaxation. Like what it recommended for deep breathing, you want to sit comfortably, starting with the breath and then essentially you’re going to pick one muscle group at a time, tighten it for five seconds, and then release and do that over and over again. And then slowly move from one muscle group to the next. I typically will start at the feet and go from feet to bottom leg muscles to top leg muscle to stomach to shoulders and chest to neck to face. You can do all of these different muscle groups. And again, there are a number of videos online that can do a guided progressive muscle relaxation, which I think is really helpful as you’re learning this skill. And so thinking about ways that we can adapt this for younger children, we know that younger children may have a harder time thinking about one particular muscle group. They often think with their whole body and move their whole body. And so there are ways that you can engage the whole body to show that difference between muscle tension and muscle relaxation. So one of the things that you can do is ask your child to like push on the wall with all of their body for five seconds, so all of their muscles are tight, and then they relax. Or they can sort of do it backwards and lean on the wall and press really hard as if they’re trying to knock the wall over. Same thing, all their muscles are tight, and then they relax. Another thing that you can do is robot and spaghetti dancing, which I will let this video explain


Video Narrator  31:14

Put their body weight on their hands for five seconds. Another fun way to teach kids to control their muscle tension and relaxation is through something called the robot noodle dance. Put on your favorite song and choose a caller. When the caller shouts out “Robot!”, everyone in the room should start dancing like a robot, tensed up muscles and short jerky movements. Then, when the caller shouts out “Noodle!”, everyone should dance as if they’re a limp piece of spaghetti, keeping their muscles relaxed, and wiggling around. And the caller can alternate back and forth between robot and noodle until the end of the song. This helps teach your kids the difference between muscle tension and relaxing their muscles and then also provides a good distraction in times of stress.


Caitlin Shneider  32:05

And so that is one kid friendly way to adapt it. We also know that for older kids, they are able to do one muscle group at a time and so there are a number of scripts online that you can read to your kids. Or you can get creative and think about different things that they can pretend to be to isolate certain muscle groups. So when I work with kids, one of the things that we’ll do is pretend there are lemons in our hands, and we’re going to squeeze all the juice out of the lemons. Or we’ll put pretend to put a jawbreaker in our mouth and squeeze our jaw really tight. And so those are ways that you can adapt this for a younger child. And just like there are videos that are guided for adults, there are also videos guided for children. And I think for time, I won’t play this one, but we can send the link out. It just walks through a child going through this one at a time and provide some more direction about ways to engage in this practice. 


Caitlin Shneider  33:08

So we’ve talked about some of the biological factors associated with stress and ways that we can trick our body into thinking we’re relaxed from that biological standpoint. And now we’re going to talk about the psychological factors that are associated with stress and ways that we can relax the mind through these ways. And so what we talked about last time was that some of the factors associated with increased itch are the way we think, how we feel, which is affect, and our awareness to the present moment. And so we cannot change our emotions and how we feel. I think many of us know that when somebody comes to you and says like, “Oh, just don’t be sad”, or “Don’t be mad”, that’s very unhelpful, because we can’t turn that off. But what we can change is the way we think, and our awareness to what we pay attention to. So one of the skills that we can talk about is called the guided imagery, which is using our five senses. So our sight, or hearing, or sense of smell, touch and taste, to either explore our environment, or to imagine something more relaxing, and really trying to harness the sensations from our five senses to help us relax. And so by doing that, we’re shifting our attention away from itch, and shifting our attention away from negative thought patterns. And again, this is typically done with deep breathing. And so this is a little bit of a clip about how to practice this skill, just like the other ones. We’ve talked about getting in a comfortable position, starting with some slow, deep breaths, and then using your imagination to pick a place that is relaxing and comfortable for you and really focusing on the five senses. So what are things that you would see in that place? What are things that you would hear? What can you touch? What can you feel on your skin? What are you smelling? What do you taste? And really getting into the details of this to be able to shift your attention away from itch and itch related thoughts or things that are stressful. And so one of the ways that we can do this with kids, since kids have very active imaginations, is to be able to encourage them to use their imagination to go somewhere else in their mind when they feel itch, or when they feel stressed. So this is a video about an example of that.


Video Narrator  35:54

Stand in a space, and make sure that you have space to lie down at the end of the practice. 


Caitlin Shneider  36:04

We’ll just watch a little bit.


Video Narrator  36:05

Imagine you are in the Arctic, everything is covered in snow, and it is icy cold. Imagine you can feel the cold air on your cheeks as the wind blows towards you. You’re standing there in the clothes you’re in now. The snow is getting heavier, and the snowflakes bigger. It’s landing in your hair, covering your clothes, and building up on your shoulders. Imagine you can feel the icy snowflakes landing on you in cold, tiny thumps. First on your forehead, then your nose.


Caitlin Shneider  37:00

So this is again another opportunity to adapt this to be something that’s more kid friendly, using their imagination. This video is talking about ways that they can feel the sensation, imagine there are snowflakes falling on their forehead. They’re telling them about what they would see, what they might envision. So they’re really trying to connect to their sensation, their senses. And having a video guide, it can be really helpful.


Caitlin Shneider  37:30

 So the last skill that we’ll talk about today is probably one of the more challenging skills, and it is called mindfulness. And there’s a lot that we could talk about for mindfulness. But we’re going to keep it pretty simple. And I think sometimes when we talk about mindfulness, it can be helpful to first talk about what is not mindfulness. So when I think about not mindfulness, we think about almost being on autopilot, like doing 12 things at once. So like cooking dinner, while talking on the phone, while turning on the news and catching up on work email. It is doing a bunch of things at the same time without paying attention to one thing at a time. And so mindfulness is being in control of your mind, rather than your mind being in control. And it is directing our attention to one thing at a time. And in doing that, we’re being aware of the present moment, without judgment to it, and without trying to change it. So we’re being aware of our external environment, what’s around us, and also our internal environment. What are the thoughts going through our mind? How are we feeling? What are we feeling in our body? And ways in which this is helpful is that being mindful allows us to first notice our experience. Sometimes, I think we talked about this a little bit after the webinar last week, we ar….e some of this is so automatic to us and we don’t even notice that we do certain things. We don’t even notice we think certain things. We don’t even notice we feel certain things. And so practicing mindfulness allows us to first notice what our experience is, which then allows us to be able to change it. And so this can be really important when we think about the way we think about itching, which we’ll talk about next week. And because we’re directing our attention in a certain way, it can also be helpful to direct our attention away from itching. It can distract us from things that are stressful. So when we think about mindfulness there are… I would say three main skills of this that we call the “what skills”, which tell us what to do when we’re practicing mindfulness. And when we think about them, they typically can happen one at a time. We can’t do all of them at once. We have to pick one. And so the first skill is called observe, which is we’re observing, again, through our senses, the world inside ourselves, and the world outside ourselves. And by doing that, we’re coming in contact with what is real, what is happening in the present moment. And this is important, because sometimes what is going on in our mind is different than what’s happening in the real world, and what is right in front of us. And so it helps us reconnect to the present moment. And so when we think about practicing “observing”, I often think about it kind of like, what we call, like a beginner’s mind. It is as if we’ve never seen something before and we’re picking it up for the first time and we’re noticing all of these parts about it. And ways that I work with kids, I might say something like, “Okay, we’re gonna pretend we’re an alien from another planet. What would aliens notice about this thing?”, and that’s what they would practice. That’s a framework that’s helpful. And when we think about observe, we think really about noticing without putting language to it. So it’s often just thought of as like wordless watching. So you’re just watching and giving your attention to certain things in a scene, or an object that you’re looking at. Another skill, which is often the second part of this, is “describing”. So it is adding the language and putting into words what you observedm so it’s kind of like that second part. First, you experience it, and you sense it from your five senses and then you add words to describe it. And this allows us to be able to point out what is actually in the environment, and maybe what we perceived or thought was there. And the last skill is “participating”, which is being fully in an experience with awareness without judgment. And it’s almost kind of like being in flow, or like being in the zone. You are so fully a part of something that you are fully participating in it. And this can be really helpful for distraction as well, trying to take our mind off of something. And so the way that we practice mindfulness is first picking what we want to put our attention on, bringing our attention to that object, and then noticing when our attention wanders, because it will. It is, it is impossible for us to keep our attention focused on one thing for a certain amount of time. We have so many thoughts that go through our mind. And so when we practice mindfulness, all we want to do is notice when our attention has gone somewhere else, and bring it back to whatever we were focusing on before without judging it. And so again, there are a number of different apps that are available for adults to practice mindfulness, like the Calm app, or Headspace is another one. And then there are some videos that can be really helpful for kids to start to practice these skills and so I’ll show you just a little clip on this. One of the ways that we can do this is using bubbles and trying to pay attention to one bubble is


Video Narrator  43:45

<<music playing>>….The room is gradually going to fill with bubbles of all different types. Some of them will be big, some small, some will be orange, some blue, some may be multicolored. I want you to look at the yellow bubble, only the yellow bubble. Follow it wherever it goes with your eyes. Don’t be tempted to look at any other bubble, stay with the yellow one. Pay close attention to it.


Caitlin Shneider  44:26

And so just as we were talking about, it’s really controlling our attention on one thing by using bubbles and colors to be able to engage kids. So this is a great, a great one to be able to practice this skill. And then I’m gonna skip this one also for time, just because I’m mindful that we’re getting close to the end of the hour. So we’ve talked about four different stress management skills, and this was really a teaser of the skills because we are not able to dig into this as much as I might prefer to. And so being able to have some of this information allows you to be able to practice it. And when we think about practicing stress management skills, it is important to do these frequently. And I think about it, when I’m talking to kids, kind of like we’re preparing to run a race. If we are going to run a race or a marathon, I certainly would not be able to go out tomorrow and run 26.2 miles. It’s gonna take me time to train my muscles, to train my body to be able to do that. And it’s the same for using stress coping skills. So if we were to have a big stressor come up, if we were to use one of these skills in the moment, having never practiced it before, probably not going to work, because we have to build the muscle and build the practice with the skill. And so it can be really helpful to just do these on a day to day basis to get comfort with them, to get experience with them. And that way, these muscles are strong. And that way when you need it, those muscles are ready to go. So that’s something that I think is important to highlight is that it takes practice to be able to get experience with this, to see benefit from this, and to be able to use it in real time to see change. So it’s important to be able to practice these skills. And like we talked about in the last webinar as well, it can also be really helpful to work with a professional to implement these skills within your family. And so our last webinar will be about how to get connected to a professional therapist or counselor, if you don’t have one already, and we’ll talk about that. But that’s something that can also be helpful, is getting some support in implementing some of these things. So next week, we are going to be talking about thinking thinking about thinking. And so we will be diving more into the way that we think about itch and our day to day experience. But I want to pause there, I’m mindful we’ve got 10 minutes left, and offer an opportunity for folks to ask questions or share your reactions to things. I’m, I think that that was was helpful last week, so I want to make sure that we make time for that. And I’m going to stop sharing my screen. There we go. 


Tyler Bradley  47:35

Awesome. Thanks, Caitlin. Does anybody have any questions for Caitlin in the last 10 minutes?


Caitlin Shneider  47:46

And if you want to submit those anonymously, you can probably also send them to Tyler or Melissa, and they can read them out as well.


Tyler Bradley  47:53

I guess I wrote down a question or two for you, Caitlin. So first question goes back to talking about sleep. You’ve mentioned, you know, you could probably talk about sleep, and that the importance for a long time. But you know, a lot of the caretakers that PFIC effects don’t have the chance to sleep because of the itch. And I was wondering if you knew of any management practices that may help in that scenario?


Caitlin Shneider  48:24

Sure. I and I think that’s a complicated question. Because I think that from what I’m understanding, you say, and my understanding of what families experiences are, they’re up because their kids are scratching throughout the night. Is that that what you were thinking of Tyler? 


Tyler Bradley  48:40



Caitlin Shneider  48:41

Yeah. And so I think that that is that will draw on some of our other skills to be able to turn down the itch, to be able to turn down the scratching, so that hopefully parents can sleep through the night more. But I think also what we’ll talk about…. not next week, but the following week is potentially different ways of responding to scratching. And so parents might, might be able to not get up as much throughout the night. So we’re going to talk more about that. But I I I know that that is a very big concern and that’s a unique challenge for for this community in particular. Absolutely.


Tyler Bradley  49:35

In the chat, Joanne said she had to leave but she thanked you and said, “I’ve been using mindfulness techniques for years, but have lost that in the past few. I need to begin doing this. I loved listening to and seeing these amazing videos”. And then Gail also said, “Thank you. That was so great. Can’t wait to check out all these videos with the kids.” 


Caitlin Shneider  49:54



Caitlin Shneider  49:55

That’s a great question. I think it depends on the family and what works best for that family. But I would agree that setting time aside for that is important and making it small and making it feasible. I think, sometimes we want to set aside like an hour or 30 minutes and that can be really hard to find within a very busy day. And so setting aside a time that’s small, like five or 10 minutes, maybe, and pair it to something you already do, like homework time, or after dinner or something like that. And I might not do homework, as I’m saying that out loud, because folks might have a negative association of homework haha. So maybe something that’s more neutral or something positive, kind of pair it with that and just tack on five or 10 minutes. “We’re going to practice some, some new things. We’re going to try out some new things that we’re going to do as a family. I’ve got some videos to show you.” That would be my suggestion is starting small. It doesn’t have to be an hour. You all are very busy, I’m sure and have a lot going on. So start with like, five minutes, 10 minutes and try and just tack it on to something that you are already doing after dinner, after they get home from school while they’re having a snack, whatever it might be. That would be a place to start. 


Tyler Bradley  49:55

And then I had one more question unless anybody else has a question of their own….No? Okay. And my other question was, do you have any recommendations or tips in setting up time to practice with a child?


Tyler Bradley  51:46

Gotcha. Awesome. Thank you. Well, if nobody else has any questions for Caitlin, we can give back four minutes here.All right. Well, Caitlin, thank you so much for the second webinar. Again, a reminder next week on Thursday at the same time is webinar number three. So we hope we see everybody there.


Caitlin Shneider  52:14

Thank you so much for everybody for being here.


Tyler Bradley  52:18

Have  a wonderful, wonderful rest of your day everyone.


Caitlin Shneider  52:23


For Rare Disease Day 2023, we offered a webinar series called “Rare & Resilient Resources: A New Perspective On Coping With Pruritus”. This is the second webinar in the series. This installment covers tips for managing stress.

Webinar Overview

There are three factors of stress that can influence itch: biological, psychological, and behavioral.  These factors act like a dimming switch that can increase or decrease the frequency and intensity of itch.  By developing stress management skills, we can reduce the impact that stressors and itch are having on us. Developing these skills is going to look different among the various age groups (for example, parent versus child). 

Having a healthy diet, balanced sleep, and daily exercise are all important for managing stress and dealing with itch. In addition to a healthy lifestyle, these four techniques may help: diaphragmatic breathing, progressive muscle relaxation, guided imagery, and mindfulness.

Learn more about these tips for managing stress, how the mind/body connection influences stress, and stress management in the parent/child relationship.

photo of webinar host. A photo of a woman with long reddish hair wearing a blue tshirt.

Host: Caitlin Shneider

Caitlin is a Clinical Psychology Doctoral student at Georgia State University. Caitlin examined the influence of child pain catastrophizing and parent response to pain on psychosocial and functional outcomes for youth, giving her a unique perspective on dealing with pruritus.