TOGETHER by AGCI

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Episode 69

Understanding Sensory Needs

Jill Crewes, Director of US Child Advocacy Services

You’re listening to Together by AGCI, and I’m Melissa Rush. We’re back with another mind-blowing episode with Jill Crewes, MSW, AGCI’s Director of US Child Advocacy Services. Jill is an adoptive mom and has decades of experience working within the child welfare system and foster and adoption community. This episode literally blew my mind. You do not want to miss Jill explaining sensory needs and how it impacts kids and adults. She also offers a ton of practical tools for caregivers of children with sensory processing needs. Don’t miss this. Well, thanks for joining us again, Jill, are so excited to have you back and talking about TBR I and sensory needs. So just to kind of start off, what are sensory needs? What does that even mean? Yeah, so our sensory systems are the way that humans understand the world. We use our sensory system to tell us what, what do we need to pay attention to in our environment? What do we need to do internally to self-regulate? You know, what do we have to be alerted to? What do we need to protect ourselves from in the environment? So, our sensory systems are really, really important. Our sensory system develops through our, through the attachment cycle that we have with our caregivers. So, when we’re very young, when we’re infants and we’re first born, there are some of our pieces of our sensory system that are fully, or that are fully developed at birth.

But a lot of the pieces of our sensory system that are responsible for helping us regulate and navigate our environment are developed as we go through that attachment process with our caregiver. So, every time a caregiver picks us up when we have a need and we’re crying and they hold us and they rock us, and they pat us, and they shush us and they meet our needs, yeah, that is preparing and teaching our brains and our bodies self-regulation tools. So, there are, there are things, there are pieces of our sensory system that I’ll get into in a little bit, but that we rely on to calm ourselves down. If we’re stressed out, if we’re nervous, if we’ve, you know, if there’s a lot going on, help us be able to focus and learn and tune out the things that in the environment, all those input sights, sounds, smells, textures, tastes, so that we can focus on what we need to focus on. And so, the process of repeatedly being picked up and soothed and calmed down, and even s swaddling when we swaddle babies, that gives them deep muscle input. And just every time we go around that cycle of having our needs met, and it engages different parts of our sensory system and stimulates parts of our sensory system to teach us those tools.

So we don’t come into the world knowing like, this is what I do when I get frustrated, or this is what I do when I get upset. The reason we start to have those skills is because we have our caregiver regulating us for us and teaching our brains and bodies, oh, well, when I rock, that feels good. Or a deep hug, that deep pressure that helps calm me down. And over time we learn those tools. And then when we become, you know, toddlers, late toddler years and up kind of through our young adulthood, we have different levels of what we call co-regulation where we are still relying on our caregiver, but we’re able to have access to parts of our brain that we require in order to be given, to be able to self-regulate ourselves and to be able to start using those tools like swaying or applying pressure. So, like in a lot of adults you’ll see like they’re trying to focus and so they’re, they’re leaning on their, on their hand or they’re putting pressure on different parts of their face. Yeah. They’re trying to self-regulate. A lot of times we don’t have any idea that we’re doing that. We’re just our brains and our bodies are doing it automatically without us actually having to think about it. Because our sensory systems have been developed automatically organize our brains around what’s happening in the environment.

So, by having, by having those tools, eventually we’d be able to, you know, when we’re late toddler years, we start to be able to use those tools and have them be successful. But we still need a lot of help. Right. And we continue to need help kind of actually throughout our lives, but at least into our late twenties, early thirties, just because that coincides with brain development. And then we move into full self-regulation. But as we all know, we all have lots of moments in our lives where no matter how old we are, we need somebody to help us regulate. Sometimes. The thing is that if we don’t get those things when we’re young and nobody teaches our brains and bodies how to calm down, then what happens is we don’t have those tools. And so many, many times if we haven’t gotten what we needed when we were young, or even in, you know, our elementary school age, age, or young adulthood, if nobody’s taught us those skills, we don’t know how to do it. So that’s something that we’ll talk about here a little bit later. One thing I do wanna go into, just as a quick explanation, is our different senses. So we have obviously our external senses. We have sight, sound, smell, touch, and taste, right? So we have our five external senses. Yeah. But we also have three internal senses.

And I don’t want anybody to get too tangled up in like what the names of these things are, but I wanna orient, I wanna orient you to them. So, our internal senses are what we rely on most for self-regulation. So, our, the first one is our vestibular system with a vestibular. And that’s really what we often refer to as like the powerhouse or the master regulator. And the reason for that is because when the vestibular system gets off offline or off-kilter or dysregulated, then it throws everything off. So, the vestibular system is all about where is my body in relation to the earth? It impacts balance and things of that nature. So, it’s connected to the fluid in our inner ear. And when we move, when that fluid moves, that engages our vestibular system. In infants, our vestibular, when we’re first born, our vestibular system is almost fully developed at birth. Oh. But not completely. We still need to have that engagement of like moving that inner ear fluid being picked up, being rocked, that kind of thing. But it is somewhat engaged if you’ve ever put a baby down too quickly, you know? Yeah. Or, or you know, or they don’t because they don’t know where the earth is. They’ll kind of like have a response. Yeah. And they’ll spread their body out and they’ll like spread out their fingers and their hands, right? Yeah.

Or if a baby is in your arms or laying down and you offer them your finger, they will grip onto your finger because it’s a way of grounding themselves. So, our vestibular system, when we’re young, our inner ear fluid is, is very liquidy. So very viscous. So, when we move that inner ear fluid, we feel it, but it, it’s, it doesn’t dysregulate us as much, but as we grow, that fluid gets, and as we age, that fluid gets thicker. So, I don’t know about you, but when I was young, I love, and I still love roller coasters and you know, oh this is so interest, like all these fun things, but I can’t do it anymore. No, I can’t. That is, so I literally just went to where I live. We have a fair every year in September, and I went to it and I was like, gosh, I like used to love doing all of this stuff and now it makes me feel sick. And I was like, I don’t know what that is. And that’s what that is. That’s fascinating. That’s what that is. Yeah. It’s like, ooh, I wanna go on the sea dragon at the, you know, at the amusement park. And you’re like, that was so fun. You get on it and you’re like, oh my gosh, get me off of this.

Because it’s so, it makes you feel more dysregulated because the fluid is thicker and you feel it much more profoundly when the movement happens. Same thing occurs when you drink alcohol or use other substances. So that’s why people, when they get, you know, they drink way too much alcohol, they get lose their balance because it thickens that inner ear fluid. Yeah. So that’s our vestibular system. Our proprioceptive system is the next internal sense. And that is really all about the feeling or the impact of deep muscle pressure. So proprioceptive pressure, that’s kind of how I like to have people remember that. But it’s all about firm muscle pressure, which can be very calming and organizing to the brain and the body proprioception is really about where is my body in space? So not in relation to the earth, that’s a vestibular system, but in space. So where are my arms? Where are my legs? You know, what’s the difference between gentle and rough? Right? How, how hard do I push the pencil on the paper to write when I have to erase something? How hard do I push? You know, when, when mom says, be careful, you know, be, be gentle with the dog. Well, what does that feel like? Right? Yeah. And so, what we know from science is that firm gentle pressure can be calming and organizing.

And so, there’s a lot of tools out there to help support sensory processing and regulation that are built off of proprioceptions. So weighted items, swaddling babies is an example of that. If you’re feeling upset and somebody gives you a hug, that pressure is proprioception and it’s giving you that calming sensation. So, proprioception is a really wonderful tool that we can use for a lot of, a lot of our kids and a lot of ourselves to help us calm down. And a lot of times, like I said, we do it naturally. If it was done for us, if it wasn’t done for us, then we don’t have that tool and we don’t know that it’s gonna be helpful for us. And the third one is our tactile system. This is the first sense to develop in utero. And it’s similar to touch, it’s kind of connected to touch, but it’s really about what is the experience of being touched. Right? Is it, is it that gentle touch on the skin? Is it regulating? Is it dysregulating? It’s connected to like, how do different textures or fabrics feel on our bodies? Right? I have a tag in the back of my shirt that’s my tactile system deciding like, is that bothering me, or is that not bothering me? Yeah. Do I need to do something about that or not? Right? Yeah. Yeah.

Seams, seams and like pants or socks, you know, the way a shoe fits, like things like that, textures of foods, it’s fully developed at birth because humans are biologically wired to require touch in order to survive. And there’s lots of studies out there about this, but we need touch in order to be able to survive. If we’re not getting touch and we’re, you know, maybe somebody’s giving us a plate of food and they’re giving us water, but we’re not getting any healthy touch, then we actually, infants can actually die. Wow. From that happening. And there’s actually studies about, you know, orphanages from years and years ago where there was big fear that if you, if you pick up a baby or you hold a baby and you do that touch that they’re gonna connect with you and they won’t be able to attach to anyone else. Oh. So, they weren’t being picked up and touched very much. What we know now, of course is that attachment is transferable and that’s, you know, we don’t ever wanna withhold that. But what was happening is that doctors would come into these orphanages and they would assess these newborn new babies for, to just their health and what, what was going on. But because the babies weren’t being held in touch, they were actually dying Wow. At fairly rapid rates.

And so, doctors were signing death certificates at the same time just anticipating that that could be coming down the road. And it was all had to do with healthy touch. But it’s another example of we don’t know what we don’t know. Right. And when we know better, we do better. So, but those are, those are the three internal systems, sensory systems, and those all work together with our external senses and are responsible for self-regulation and successfully navigating our environment. Wow. That is fascinating. Thank you. I did not, I knew about the external, but I did not know about the internal, and that just, you’re blowing my mind. I, so I have a few follow-up questions. You, you mentioned, you know, regulation regulated and dysregulated. Can you just kind of give people an overview of what that means? Yeah, certainly. So, when I think about dysregulation, like if you just picture for yourself, when was the last time you felt really stressed out, right? Something was happening, maybe you didn’t feel like you had much control over the situation and you just felt like in your body, the physiological sensations of that. So, you might have that like feeling of the pit in your stomach or butterflies or tightness in your chest, or you might like, you might flush like, I don’t know how, what I’m trying to say, but like, your SL gets red, right? Yeah.

You flush your body temperature might change, although you may not notice that breathing patterns, heart rate, all of those things could happen in time when we’re stressed or when we’re dysregulated, when we feel just kind of outta sorts and uncomfortable, right? So that there’s physiological things that happen with that. And then what ends up happening is that also impacts our sense of felt safety in our environment. Like, am I okay here? And you know, is, is something gonna happen that’s gonna make me unsafe? Do I have the tools and skills I need to be able to manage that or not? Right? So, for me, that’s kind of how I think about dysregulation. And a lot of times that dig dysregulation is impacting our brains and bodies and our emotions and we may not be able to verbalize it or really even understand it. And so, what happens is it creates behavioral responses, right? So, something small, like if I’m dysregulated and the doorbell rings right, then I might have a much bigger response. I might have a, a more of a, like a fear response or like a, oh my gosh, what was that? It might scare me or something like that if I’m dysregulated because my body and my brain aren’t ready to handle something different and have a response that you would think would be more appropriate for that situation. And we see that all the time in our kids.

And then regulation is the opposite, right? It’s when we are able to navigate our world, navigate our environment, understand and work through different things that are happening in our lives. Whether they’re physical things, environmental things, emotional things, sensory things, right? We have the tools and skills to say, oh that’s okay, I can calm myself down. Or you know, I got, I got a little dysregulated, I got a little upset about something, but I have the ability to calm myself down. So, I might take a deep breath or I might take 10 deep breaths, I might count to 10, I might pick up a fidget and start playing with it. I might do, you know, to do different things like that to help me calm down. Right? I mentioned earlier pressure points on our face. Yeah. If you’re in a, you know, next time you go to a meeting I will be watching. That’s kinda stressful. Or people seem like they’re tired paying attention because you will see them like lean on their hands or like different pressure points on the face. They might be grinding their teeth, things like that. They’re using the appropriate system to help them focus, stay regulated, stay present, stay awake. And they probably don’t even have any idea they’re doing it right. But it was done for them, so they know, oh, this deep pressure is helpful for me. Yeah. That’s so interesting. Okay.

And then are there things that are like inherently regulating or calming or does it just kind of depend on the, you know, what your caregiver modeled for you? Or like what you developed yourself to like self-calm or how does that work? Yeah, that’s an excellent question. It’s dependent on the person. The reality is that we all have a sensory profile, right? We all have things that we like and all, we all have things that we don’t really like. And we all, based on what we experienced with our caregiver, as well as just our experiences in the world, as we grow, we develop an understanding hopefully of the things that are calming to us and the things that maybe don’t work so well. And that’s gonna be different for everyone. The more the support that we had and the more, you know, sometimes it’s just modeling, you know, having a caregiver model and say, Hey, you look upset, let’s go take a walk. Yeah. That’s engaging the sensory system, right? To like move your body and get outside and get fresh air and you know, you’re getting internal, you know, app receptive in this ular input when you’re walking and they may not tell you all of that. Yeah.

But if you’re modeling that, like the more modeling you have and the more experiences of when you’re young, having your caregiver help your brain and body regulate by using their brain and body, the more tools and skills you’re gonna have. But we all have our own preferences. We have things that we seek and things that we avoid just depending on how our bone, brains, and bodies fall developed. Okay, thank you for explaining that. So, on a, on kind of a deeper level, I guess then, what causes those differences in sensory needs? Yeah, so again, I think it’s, you know, some of it is really around, like a lot of it has to do with what we experience. Not just post-birth, but in utero can have some impact on that as well. You know, if we were exposed to substances in utero, that’s going to impact our neurochemistry and the way our brains developed, which, which can also impact our sensory processing. But when we have unmet sensory needs or when we don’t get that co-reg that other, you know, being regulated by somebody else, or we don’t have somebody who’s really helping us regulate and helping us learn to navigate our environments and what’s happening internally, then we have behaviors. Right? Nobody likes to feel uncomfortable. It, it’s just, I haven’t met anyone at least that likes to feel uncomfortable. Me neither. Me neither. You know?

So, it’s when we feel uncomfortable and when we feel dysregulated, there’s a desire to fix that, right? Yeah. Or to get away from whatever’s irritating us or bothering us when we don’t have the tools to do that, or we have needs that from our sensory system and we don’t know how to meet those needs, then it causes behaviors. So, we have, and especially in our kids, but also as adults, right? And so, behaviors are a way that we, we kind of, we communicate like, I don’t feel good. Something’s going on, right? Yeah. And if we don’t have the knowledge about what’s really going on, it’s very hard to verbalize that. Yeah. And so, we can have confusing responses to stimuli or situations that don’t make sense to the person who’s outside of us. Right. It’s like, why are they having such a big reaction to, you know, they, we, we are going out, it’s fall right now, so we are going out for walk and there’s, there’s these beautiful leaves and they’re on the ground and every time I step on a leave and it crunches, my kiddo gets really angry and yells and covers their ears. You know, like that’s an over-the-top. Like why would somebody have that kind of reaction? Right? Yeah. Or maybe it’s a reaction that doesn’t make any sense. Like maybe they shove, you know, maybe the kiddo shoves me.

What they’re trying to do is get away from those leaves, but they might not be able to verbalize that and might not even know why it’s irritating or why they’re feeling irritated. Yeah. A lot of times the behaviors that come out can look like defiance or manipulation to caregivers because they’re, there’s an unmet sensory need again because they don’t know how to tell us with words what’s going on and they may not even understand themselves. So, a couple of examples of this. So, my son has a lot of challenges around his sensory needs because of his history. And we’ve done since he, when we learned about it, probably when he was about three or four, and he’s 16 now. And we’ve been learning and developing tools and skills and working with him and supporting him ever since. And we, but before we knew about this and even when we knew about it, but we didn’t quite fully understand it. Yeah. We would get into these arguments about what he was gonna wear out to a nice dinner. Right. And he is an athletic wear kid, right? Yeah. It’s, so I would just, we would, I’m like, okay, this is it. This is where I put my stake in the ground. You are going to wear the jeans, you’re going to wear the khaki pants. Yeah. The button-down shirt, like you’re gonna do it. Like, that’s the expectation for going to wherever we’re going.

And he would dig his heels in and be like, no, I’m not. You know, and it would just become this big thing, right. Big behaviors. I would eventually win because I’m the adult, and I would force the issue and say, no, this is what you’re wearing. You don’t have a choice. But in the, in the end, I would be losing and he would be losing because he couldn’t, it was very hard for him to deal with the feeling of those fabrics on his skin that seems in the pants. The hardness is a word that comes to mind of those fabrics. Yeah. Like the rigidness of those fabrics. It just was just so uncomfortable for him. And so, he’s so uncomfortable and he can’t get rid of it because he has to wear it. Yeah. So, then he’d have big behaviors. Yeah. You know, so he would shut down at the restaurant, it’s time to order, you know, this is a special thing. We were going out to dinner as a family, we don’t get to do that very much. And he’d be crossing his arms and Right, this is stupid, I don’t wanna be here. You know, or he’d start crying and it was because he was so uncomfortable, right? Yeah. Yeah. He wasn’t being defiant about wearing the clothes, he wasn’t being manipulative, he was trying to say, this is too uncomfortable for me.

And another example of that is we, we were in a small town, small mountain town on 4th of July and in small towns at the parade for 4th of July, they have a lot of emergency vehicles. And at this particular parade and, and in small town parades, like you can see the beginning and the end of the parade all so really small town, especially if it’s a straight street. So, this is where, this is where we were and we go, and normally, you know, it’s like parades are fun. They’re giving out candy, they’re giving out freebies, you know, fun things to look at. And we went to the parade and he just immediately like, shut down. This is dumb. I hate parades, I don’t wanna be here. He sat on the curb, crossed his arms, put his head down, just had this like angry disposition and my not TBRI response, my initial reaction was, you know, hey, what’s up? And you know, what’s going on with you? And then he gave me the, this is dumb, I don’t wanna be here, I hate this, I wanna leave. You know? And I’m like, buddy, I thought you like breathe. They’re giving out candy, they’re doing this. No, I hate it. It’s dumb. And so I got irritated and I was like, well fine, I’m not gonna let you ruin it for the rest of us. Okay. Not the best way to respond. Right.

So, I checked in with him a couple of, a few more times and kind of had a similar response. And then I was like, okay Jill, take a deep breath out. Regulate yourself. Yeah, yeah. Don’t keep doing the same thing because it’s not working, it’s just making it worse. So, I decided, I, you know, I sat down on the curb with him and I put my arm around him. I was kind of rubbing his back, I was trying to calm him down, I was trying to connect with him, be present for him. And as I, and I’m like, buddy, what’s going on? And as I’m looking at him, I’m looking the direction of the end of the parade. And I have, I’m like, oh, he has a lot of auditory sensitivity. It’s very, very dysregulating for him. And so, I saw the firetrucks and the ambulances and all of that coming from the end of the parade. And I said, buddy, are you worried about when the fire trucks and the ambulances come? And he’s like, yeah, they’re so loud and they blow their sirens and I hate it. I’m like, oh yeah. And I was like, of course. Like of course he’s gonna respond that way behaviorally because he’s anticipating the assault of that sensory input and how dysregulating and uncomfortable it is for him. Yeah. So, I was like, oh, I get it. I understand, you know, really short parade.

So, I was like, do you wanna go to the car instead and wait until a parade’s done, which would probably be like another five minutes. And so, and he’s like, yeah, I wanna get outta here. I like, okay, do you want me to take you or you wanna go with dad? He’s like, I wanna go with dad. You know? Because I didn’t do a very good job at the beginning, but he went with his dad to the car. And from the moment he got in the car, my husband was like, he was happy he was back to himself because he had gotten away from the anticipation. Yeah. So, it’s like, that’s just an, and there’s so many examples of that that we see, especially with our kids who come from hard places and have histories of trauma who haven’t gotten what they needed, who may have been pre prenatally exposed to high-stress pregnancies or substance abuse, substance abuse in utero. Their systems just aren’t, they’re, they’re, they’ve been wired differently or they may not have gotten what they needed. And so, they’re gonna have behaviors in response to that. And again, a lot of times it’s not because they’re trying to be manipulative or defiant, they’re trying to honor their sensory needs, but they don’t know how. So, I think that’s, that’s an important thing.

So, and I have, unless you have a question, I have kind of a guided imagery that I would love to do. Oh yeah, let’s do it. Because I think it’s super helpful. So do it with you, you, and I sitting here, and then for our listeners. So, if you’re comfortable and willing to, it’s helpful to close your eyes, but you don’t have to, I’m willing. Okay guys, my eyes are closed. I would start with taking a deep breath in through your nose. Hold it for just a few seconds and then exhale through your mouth. Let’s do that one more time. And through your nose hold, exhale through your mouth. Okay. I want you to think about one sensory experience that for you is just extremely annoying. Dysregulating irritating. Right? So, it could be a sound texture, a taste, a smell. If anybody’s having a hard time thinking of one, a common one is fingernails on a chalkboard. For me, it’s the smell of a dirty dish sponge. Oh, I won’t even pick them up because it gets on my hands and I, it’s too dysregulating. So, think about that thing for you, whatever that thing is. Okay. Okay. And I want you to imagine waking up this morning and there it is, fingernails on chalkboard, dirty dish bun. It’s there. It’s just like, it’s it, for lack of a better word, it’s in your face.

It’s, you cannot get away from it no matter what you do. Right? You get ready for your day, you have breakfast, maybe have some coffee. It’s still there. Like there’s just no getting rid of it. It’s constant. You get to the space where you work, it’s there. It’s there at lunch, it’s there on your way home from work or when you leave your office space, it’s there. It’s there. When you eat dinner, it’s there in the evening. It’s there when you get ready for bed. It is there until you fall asleep. And no matter what you do, you can’t get rid of it. So, I want you to just think to yourself and Melissa, if you wanna provide feedback, I would welcome that. Yeah. How does it feel? How do you feel? Suffocated. That’s great. That’s an excellent explanation. Suffocated, what else? Yeah, I, for me, the thing I was thinking about was the feeling of newspaper, which I like, just thinking about it like makes me, I wanna like crawl out of my skin. Yeah. So, I, yeah, I was just thinking like, I don’t know how I’d be able to focus, how I’d be able to get anything done. I’d feel on edge. I’d feel tense. I’d feel angry. Yeah. If I would. Yeah.

What, what if, what if, so this is all great, what if, what if somebody like your boss came to you and said, Hey Melissa, I need you to do these extra things today. How might you respond? I’d be, I’d be frustrated. I’d feel like no one understood what I was going through. Yeah. And like the things I was up against just by like getting through the day. Yeah, yeah, yeah. So, let’s kind of close out the guided imagery for everybody. Let’s do some deep breathing to get us back regulated. So in through your nose. Okay. Hold it for a second. Exhale. And this is not what’s going on. Another deep breath. Hold it, exhale through your mouth. Okay. We’re not having that sensory experience right now. The reason I did that activity with everyone is because that is what many, many of our kids that have sensory processing challenges and don’t have tools or understanding or skills or support to navigate them. That is what they feel like all day, every day, all the time. Yeah. So, you can imagine how they’re going to have a lot of behavioral responses Yeah. To sometimes seemingly inconsequential things or that they’re not gonna be able to navigate situations the way you might expect them to. Yeah. And so, I think it’s just tremendously important to like understand what that’s like. Yeah.

And for some of our kids, it’s not just the newspaper or the fingernails on a chalkboard or the dirty dish sponge. It’s all of those things. And then some. Yeah. So, there might be a lot more, you know, and so we see things like somebody bumps into them in the hallway at school and they turn around and punch ’em. Yeah. Because they’re at that level of, I cannot take anymore. I’m holding it together as much as I can and one more thing I just can’t, I’m gonna combust. Right. So, I just think that it’s, I find that to be a helpful tool. Yeah. To remind ourselves of like what it’s like, you know? Absolutely. I mean, and there’s also just like this feeling of, it’s like a panicky kind of feeling like of not being able to get away from this thing and having people, like you said, I mean it, it’s to someone who isn’t struggling with that particular, you know, the sensory, you know, input of that doesn’t bother them. They’re like, what’s the big deal? And to having to constantly explain and you don’t even know why, but you feel uncomfortable. You feel like you’re crawling out of your skin. I mean like yeah, it’s amazing that they can get through the day at all because just doing that exercise I was like to like, I just, I felt panicked.

I felt like doing those deep breaths at the end actually really helpful because it kind of instantly calmed me down. But I’m like, if you don’t have, if you don’t even have those tools, if no one understands how you feel, that’s just miserable. Yeah. And it’s exhausting. Yeah. Yeah. I mean you think about it, like one of the things that I think about just popped into my head is that like, well he’s a teenage boy, but all his life, all my son’s life, he like, he just eats and drinks a lot and you know, I know with teenagers a lot of times we’re like, where are you putting it? Right? Yeah. Yeah. They’re, they’re like bottomless pits but he’s kind of always been like, you know, he’s always hungry and he’s always thirsty and it’s, you know, at one point when he was much younger, we even had him test it to see if there’s something medical going on, which there wasn’t. But I think it’s connected to how hard he is working every day. You know how hard his brain and his body is working to just to navigate his environment and just to keep himself regulated. And you know, it’s definitely gotten like, well I can’t speak for him, but we’ve identified and like developed different tools and things like that that have been super helpful for him. So, he has much more capacity now to be able to manage that.

So, it’s definitely not intense, as intense as the imagery, the, like that experience we just did. But you know, it’s still there. Right. Yeah. And so, I think that’s important to remember too. Like sometimes they’re like, well if my kid just had a blowup, whether it was sensory or not, why on earth would I like give them a snack and something to drink? Well because they have just burned through calories, blood sugar and their hydration reserves. And in order for their brains and their bodies to become regulated and stay regulated, we need to replenish that. Yeah. So just something, just a little side note there. No, that’s Jill literally every single thing you’re saying, I’m just like, the world needs to know this. Like, I just feel like how much like pain and suffer, you know, I know we, we all do the best that we can and, and that’s, you know, all you can do. But like, oh my gosh, I just feel like how much pain and suffering could be, you know, alleviated if people had understanding about this and, and could like reframe the way that they view, you know, difficult behaviors and think about like your child is like probably not just trying to irritate you like there’s something else going on, you know, and oh this is right. Yeah.

Like refusals to like do certain things or wear, wear certain things or eat certain foods or you know, even kids like they’re a lot, you know, kids who have like tactile sensitivity, like that soft touch is too much. It’s like too dysregulating. Like those are kids that sometimes you’ll see them, like their parent gives ’em a kiss on the cheek or something and they wipe off the kiss. Yeah. And oftentimes that’s a sensory response that like, oh that was too light. It’s kind of like, you know, somebody brushes you too light on your arm and it makes you itchy or something and you feel like you have to scratch it. Kind of like that. You know? And sometimes it’s very easy to personalize that, interpret that as, oh well they don’t want me to give them a kiss and it, it could be that but it’s worth asking the question. Right. Yeah. And not shaming the child for it. Absolutely. Absolutely. I think I know the answer to this, but I’d love to hear your take on it. Are sensory needs specific to kids or are they lifelong? Yeah. Sensory processing challenges or needs They don’t go away. Yeah. But they can be managed successfully. If we can identify what’s going on, understand it, help determine and discover the tools and the techniques and the things that will help that person be successful in the world. Because ultimately that’s the goal.

So, like I said before, we all have a profile. We all have things that we seek, we all have things that we avoid. I don’t want anybody to think that just because they don’t like having covers on them when they go to bed at night that they have a challenge or there’s something wrong because that’s not the case. Right? Yeah. That’s just their profile. It’s just their preference. When it becomes a sensory reprocessing challenges challenge is when we aren’t able to successfully regulate or navigate around those things that either we’re avoiding or we’re seeking and they interrupt our capacity to just kind of have everyday life. So, when we have, when, when those of us who, if we have sensory processing challenges, we can learn techniques and access tools, there’s a lot of tools out there to help manage our sensory needs, we can prepare our sensory systems for success on purpose like ahead of time. We can rely on other people that we trust to help us work through that. So, some of the tools, and I think you know there we will get into this maybe a little later, but things like weighted items, like I mentioned fidgets, you know, playing in the sand there, there’s lots and lots of things and we’ll talk, we can talk a little bit more about that in a little bit. Yeah.

So, kind of going into that a little bit more, what can you give an overview of like what TBR I is and how TBR I can help kids with sensory needs? Yeah, certainly. So, first of all, I think it’s really important. I’m, I’m assuming that most of the people who are signing on and listening to this are also caring for children or have people in the, in their lives who’ve experienced trauma and they’ve come into their family maybe through adoption or through foster care or things like that. And what we know is that approximately one in every 21 in every 20, which is actually a lot, one of every 20 people in the general population in the US has a sensory processing challenge of some kind. Like, it may not be a bunch of different things, but it may be a few things. But 19 out of 20 children with histories of complex trauma and who are those kids that often are coming to our families through foster care or adoption. 19 out of 20 of them have sensory processing challenges of some kind. Wow. So that’s huge. It’s, I cannot express how incredibly important it is for us as caregivers, all of us for us that are caring for kids who have histories of trauma to understand sensory needs and to do what we can to meet those needs because it’s so incredibly common because of what they’ve been through. Yeah.

So, with TBRI, Trust-Based Relational Intervention was developed by Dr. Karen Purvis and David Cross. It’s a holistic intervention that has been developed over the last several decades. It’s rooted in research and science, it’s evidence-based, it’s all about meeting the needs of the whole child. So, it’s an approach to caregiving that is focused in on where is the child developmentally in that moment and how do we move them into the place where we need them to be. Developmentally it’s responsive to trauma, trauma and it’s really deeply rooted in attachment. And so, a piece of that, if we’re thinking about whole child body, mind, spirit, soul is thinking about meeting their physiological needs and their emotional needs. So those would be our empowering principles. Okay. So, in TBRI, we have connecting principles, which are all about meeting attachment needs, empowering principles, which are all about meeting physiological environmental and emotional needs. And then correcting principles which are about addressing fear-based survival-based behaviors. So, in the empowering principles we really learn a lot about understanding our children’s sensory needs and then offering ways and tangible tools that we can proactively meet those needs and teach our kids how do I calm down, how do I successfully navigate the environment? And it just really provides these kind of hands on ways to support healthy connections and teach and build self-regulation.

Go back and give them what they may not have gotten before they came to us and create a sense of felt safety so that our kids can heal and thrive from their histories when we are dysregulated and when our sensory systems are like on super high alert. And we, you know, like that guided imagery when we feel like that we don’t feel safe. Yeah. And when we don’t feel safe, we can’t learn and it’s very hard for us to trust and you know, do all the healthy things that we want to be able to do in our lives. So TBRI offers a lot of support for that and a lot of hope for sure. Yeah. I mean and it’s never, that’s something that’s so I think beautiful about, or at least like my understanding of TBR I is that it’s never too late. There’s always, it’s always possible to like create healthy attachment, to find like practical strategies. And no one is beyond that. And that’s just, if you’re listening to this and you feel overwhelmed, like there, there really is a lot of hope. Yeah. And there, it doesn’t matter how old you are. Yeah, yeah. It could be 104 and it’s still, there’s tools that can be supportive, which is so wonderful. So, if a parent or caregiver suspects that, you know, maybe there’s kind of something more going on with their child’s sensory needs, like what, what should they do?

Like what’s kind of the first step? Yeah, so the first thing I would do is I would suggest seeking out an occupational therapist who has expertise in sensory processing to do an evaluation. And many OTs are well versed in that, but not all of them. So, ask the question, right. When you’re getting a referral from, you can get referral from your pediatrician. You can also, like through the school district, they do, for younger kids heading into school age, they do like well-rounded evaluations called child find evaluations. And a piece of that puzzle is an occupational therapist. So, it’s another place. But ask the question, do they have familiarity, familiarity with sensory processing needs, do they have any expertise in that area? And then if they do identify, yeah, hey there’s these things happening, I’m recognizing these things. Ask for tools and suggestions of activities and things that you can do at home proactively to meet those needs. So that if we’re, if we’re proactively meeting those needs, then hopefully there won’t be big behavioral reactions because they’re getting what they need, they’re getting the support that they need. So, some tools come to mind just from like things that we did with my son when we were learning about this.

So, like we made, we took a piece of like PVC pipe and some climbing rope and like we put it, we made like a trapeze, and we had it like in his ceiling, in his room so he could hang and he could swing. Trampolines are awesome. Now I know they are dangerous, right? So, you wanna make sure that you’re considering safety with that. But trampolines can be super helpful. Swimming is excellent weighted items. Fidgets, there’s something called chew what’s that? Which is basically jewelry you can chew on. Oh. So, it’s like silicon and they make ’em in different levels of hardness, I guess. And so, if you have a kiddo that could maybe has some sensory seeking behavior, most likely around appropriate asce. Because if they’re trying to chew on things, they’re trying to get proprioception. Those are kids that, like they’re chewing on their shirts and stuff like that. Yes. Getting them something that they can chew on. That’s not a big deal. Right. They have braces, they have necklaces, they have key, they have all this stuff and then you can clean it and, and all that. But those can be expensive. And so, my recommendation, and this is what we did, we, I went to like a school supply store and I got a bunch of different pencil grips, you know, so like different textures, different like sizes.

And I put it on a string, and I had my son try ’em out and decide if he liked what, like what he liked. And then once I kind of knew, then I could go and get something that was made for that, you know. But really asking for those suggestions. The second thing is like building your knowledge and your understanding about sensory processing and sensory processing challenges. Take a TBR I class, right? Dig in and learn about the empowering principles. And because once you understand it more, you’re much more equipped to address it. And then the third thing is when our kids have behaviors, ask yourself the question, is this related to an unmet sensory need or a sensory challenge? Is there something sensory happening? Because chances are that could be a piece of what’s going on and a piece of the puzzle, especially if the behavior is really perplexing and confusing to you. Could it be sensory? Try to think about, be a little bit of a detective, like what’s happening in the environment right now? You know, if they just got home from school, think about how much sensory stuff is happening at school. Especially if they’re like middle school, high school and they’re having to go walk in the hallways to different class. I mean there’s so much noise and sights and sounds and stuff going on.

People bumping into you and, and you have five minutes to get from point A to point B and then you have to all of a sudden sit down and be ready to learn. I mean I can’t. I think most of us can’t do that. Like no, no, go into like this crazy environment and then go in and be quiet and learn. I mean it’s, you know, so just being no way and sit still and don’t move or talk. I mean, gosh. Exactly. The other thing that I would also add to this is as you learn, teach your kids, it’s like incredibly empowering for them to understand what’s happening in their brains and bodies. And it’s so helpful because then it’s like, all right, this is, this is, I know what it is and I know how to manage it and I know why I’m using these tools to manage it. So, for my son, like he knows all the words. He knows vestibular, he knows pro reception, he knows tactile like, and he knows what those things mean. And so, he’s a kid that like, he seeks out a lot of pro reception. So, he’s a crasher, he’s a bumper. He needs that deep input because his brain doesn’t interpret it the way other people’s brains do. And so, we’ve taught him the word like proprioception and what it means.

And like, so he can tell us like, you know, if he’s, if he’s like stressed out and we’re like, Hey, buddy, why don’t you go like what we call heavy work, like lift some weights or do something like that and get some deep muscle in. He’ll be like, yeah, I’m gonna go get some proprioception. I love it. You know, it’s awesome. I love it. And you know, when he was younger we would tell him like we had to do more proactive stuff as we were teaching him. But if we would start to recognize that he was getting dysregulated, we would point out and say, Hey, buddy, it looks like your body’s getting wiggly. How are you feeling in your body? You know, helping him learn what does it feel like when I’m getting dysregulated? And then providing a suggestion, Hey, it looks like you’re a little wiggly. Let’s go out and jump on the trampoline for a little bit and get those wiggles out so that you can focus on homework or whatever it is. And then the repetition of that is that eventually, they will start to self-identify what it is that they need and self-prescribe and take advantage of those tools.

So, one time when we, I don’t know, he was maybe nine or 10, we were getting ready to go to a friend’s house for dinner and we were literally walking out the door and he’s like, Hey, can I go jump on the trampoline? I’m like, why buddy? Because my body’s feeling wiggly and I’m afraid if I don’t go get my energy out, then I’m gonna make a bad decision and get in trouble. And it’s like the heavens opened and the angel’s saying, and it’s like, yes, that’s what we want. That’s what we want. Yeah, yeah, yeah. Oh wow. That’s a beautiful example. And I think also just like empowering for kids to know like, hey, this is just how your brain is and that’s okay. And like there’s ways to help calm yourself down and to, to feel like empowered with the knowledge of what’s going on and not like you’re weird or that, you know what I mean? Or that’s not okay. Like I mean I think, I don’t know, I think sometimes people feel like, oh this, you know, by like labeling something, it makes it feel like they’re different or, or whatever. But I mean, I just think for people to, it’s always better for people to have more information and to like feel empowered and, and understand what’s going on and not feel so it makes you feel a little bit less outta control. Yeah, yeah. For sure. Yeah.

And like it’s not your fault, like it’s just, it’s the way your brain and your body are wired and there’s things we can do about that and you know, here are, here are some, some ideas and yeah, super, super helpful. That’s awesome. Are there resources that you would recommend for parents or caregivers of children that are navigating, you know, more complex sensory needs? Yeah, sure, I’ll get into those. There are a couple of like little tidbits that I thought might be helpful for people that I like it. Yes, please love to add. Yeah, yeah. As well. So, you know, I think that thinking about things like try not to argue with your child about something that is a sensory impacted situation. Like what clothes are you gonna wear? Like if you know that that’s a sensory need for your child, don’t dig in your heels because you may get them to wear that outfit, but ultimately everybody’s gonna be suffering, you know, it’s not gonna be good. So, once you start to learn what those sensory needs are, try to start honoring those and recognizing and reminding yourself of those so that you don’t wind up in situations where you’re having a battle with your kid over something that’s like fingernails on the chalkboard to them. Right? Yeah. Because we don’t, I mean nobody wants to make their child feel that way. No. None of us wanna feel that way. No.

So being, thinking, thinking about those things. So, you might need to be mindful of like if, if you’re getting clothes, new clothes for the school year or your child grew out of their shoes or whatever, be thinking about their sensory needs when it comes to that. If you take them shopping with you and you have ’em try on clothes and they’re saying they don’t like something and you do just say, yes, it’s okay. Don’t, they don’t have to wear that thing that they don’t like because they might say, well I don’t like the way it looks. But what they might really be feeling is, I don’t like the way it feels. Yeah. Foods, same thing, right? Texture can be really, really vague for a lot of us actually thinking about smells and scents, like unscented soaps and things like that can be important for kids who struggle with like, it’s too much sensory smell-wise. Yeah. Think about sensory needs when you’re deciding who sits next to each other at dinner or who sits next to each other in the car. Or who’s gonna share a room with who.

Because you don’t wanna have a child who seeks, like if they’re seeking a lot of like deep muscle input and they kind of crash into things and like if they give you a high five, it’s a really hard high five with a, with a child or a person who like does not like to be touched, that’s just not gonna work very well. So, kind of thinking about those things and setting yourself up for success in that way. Inform the school or daycare provider about your child’s sensory needs, what their preferences it are and what works, what tools are working to help them navigate their day. Right. Successfully. So, at schools have a lot of resources. If your child has an individual education plan, that’s a great opportunity to build some of the stuff into it. They could, there could be an occupational therapy evaluation as a component of that plan, but schools have things like standup desks and wobble seats and different writing tools and stuff like that. Being able to chew gum at school can be really helpful. Yeah. Next thing. Providing physical activity every two hours and always offering that opportunity for an activity before or during a difficult task or something that requires comp concentration, like homework. Don’t expect your child to come home and sit at the table and do their homework right away. Yeah. Give them a snack, give them water.

Encourage them to go ride their bike, jump on the trampoline, take a walk, do something active so that they can have a break. And then reorganize their brain. You can set up things in your home. Like I described the trapeze, we had other things we made a little, kinda like a, it was a, I don’t know, it was a swing, but it was like made out of swimsuit material and we also hung that from the ceiling and he would get in there and it would stretch down so he’d get that deep pressure and I had one of those swing in it. Yeah. So, things like that. Just different activities like getting your body moving. I mean if you just think about it, like there’s a reason why we don’t like to sit on Zoom meetings all day. Like it’s too much sitting. Like, we need to get up, we need breaks, we need to move our bodies to keep our brains engaged. And I already mentioned, you know, teach your child, teach ’em about their sensory needs, teach ’em how to meet ’em to empower them for success. So those are some tips. And then I know you asked about other resources. So, there are some books that I really like. There are actually a number of books that are written by Carol Stock Cranz. Okay. One is called the Out Sync Child.

She also wrote one for Older Kids, it’s called Out Sync Child Grows Up, she has the Out Sync Child has Fun. I mean there’s a whole kind of series of ’em. Yeah. I really love those books. She’s trained as a, or she’s a kindergarten teacher and then became an expert in sensory processing. How has a really beautiful way of helping, I mean, in her books of like helping people understand what the needs are and what they look like. So those are just really good books. And then there’s another book called Sensational Kids by Lucy j Miller, who’s also OT expert in the Field of Sensory that I would recommend. And then there’s a couple of websites. So, there’s a website called understood.org. Okay. And that is one that’s, it just has a lot of resources and like they have like infographics and little, you know, information in smaller bits. And it’s mainly focused on like their overall focus is helping support kids who have learning challenges, but there’s pieces in there that are appropriate around super sensory as well. And then as a resource, funandfunction.com. And that is a store, an online store where you can go and look at like different sensory tools and they have ’em categorized by like what the sensory need would be. So, they’ll have tactile tools and proprioceptive tools and the Ular tools. And you can go in and you can look.

I would say if you find something on that website, go look and see if you can find it on Amazon or, because you know, prices can be different. Sure, yeah. Or if you find something that you think, Ooh, this could be helpful, but I’m not sure yet. Think of creative ways that you can maybe make something similar without spending the money yet. So for example, if you think a weighted best might be helpful for your child, but you’re not sure, get like an old t-shirt and sew some rocks in the bottom of it and get that sensation, see if it’s helpful, or just get a backpack and fill it up with a bunch of heavy stuff and have the child walk around with it and see if it makes them feel better when they’re feeling dysregulated. Yeah. And then the last one that I thought of is if you go onto YouTube and you put in Brain Highways and then you could put in, like, you could probably just put in Brain Highways sensory and they have a number of videos, short videos about prop reception, vestibular, different sensory needs, and it’s children talking about what it feels like to have different sensory needs. So, there’s this one little kid, and I love it and I think it’s such a great description.

He talks about Propreceptive needs and he said, it’s like when you’re numb from going to the dentist, like you can’t feel right. So, you need more input to feel it. So, I just think that’s, that’s just a, a nice way to also kind of hear it from the child’s perspective. Yeah, absolutely. Well, Jill, I, you gave me so much to think about and I know this is gonna be an amazing resource for so many people. Thank you so much for being here and sharing your wisdom and yeah, I just so appreciate it. Yeah, absolutely. Glad to be here.

 

That was Jill Crewes. AGCI’s Director of US Child Advocacy Services. Thanks for listening to Together by AGCI. As always, if you liked what you heard, please rate or review us wherever you listen to podcasts. If you’d like to read or watch even more stories, check out our website, allgodschildren.org. Reach out to us and let us know what you think on Instagram @allgodschildreninternational or email us at together@allgodschildren.org. We look forward to sharing another story of hope. The next time we’re together. We’ll talk to you soon.