Episode 8: Presume Competence

Kristy: 00:07
Welcome to Unshaken, the podcast where unwavering faith meets real life. I’m Kristy, and together with my husband Tony, we dive into authentic conversations, offering biblical insights and sharing stories that inspire resilience, especially for families navigating the unique challenges of disabilities. Join us each week as we explore faith, family, and the journeys that keep us grounded in Christ. Don’t forget to subscribe so you never miss an episode. Let’s stand firm together. And today I want to talk a little bit about what I do. So professionally, I am currently the director at a small school here in Florida. For students who are non-speaking or minimally speaking, they have sensory and motor differences. I’ve been in this field for just about a year, and I have to say that while I was terrified the first week or so, I have come to love this work so so much. That very first day that I showed up, I’ll tell you all about it. So I like I said, I went in terrified. Didn’t know how it was gonna go. I have had very little interaction with people who didn’t speak before that. And all I could think was that I was gonna embarrass myself or I was gonna embarrass them, that I wouldn’t know what to say, or that they would try to communicate something and I wouldn’t get it. Like all I could do was make a list of the ways I was gonna get it wrong. I went in as just this crazy bundle of nerves, and the very first student I interacted with just put it all to rest for me. In those very first moments, it just became abundantly clear that despite not having words, these kids communicate just fine. There were some, you know, some silly things. Uh there was a kiddo who handed me a water bottle, handed me his bottle of water, and I didn’t know what to make of that. Thanks. Uh, not sure what to do with this. And a teacher said, I think he wants you to open it. And I was like, okay, got it. You know, and I was able to say, you know what? I got that wrong this time, but next time I promise I’ll do better. But hopefully every day it does get a little bit better. Anyway, so I want to talk a little bit about some of the specifics of it. We support every student, irrespective of their level of speech. And like I said, they’re all non-speaking or minimally speaking. We have some unreliable speakers, but we support all of them in developing a reliable method of communication, which for us is spelling or typing to communicate. It’s a skill that they learn with a practitioner in addition to working on it at the school. I’ve had some training, my entire team has had some training, and I have a few teachers who are practitioners, so they’re able to provide this sort of service for money outside of just working one-to-one with the students at school. I want to talk about why I say non-speakers, because before I came to this position, I had only heard people say non-verbal, that someone was non-verbal. Immediately, that was one of the first differences that I saw having worked here. What I’ve learned is that when you say that someone is non-verbal, you might be doing them a really big disservice. And the reason is because when someone is a non-speaker, what you see is not always what you get. It’s not usually what you get. Speech is it’s a motor skill. The ability to move your tongue, to move your mouth, that’s all motor stuff. Language is cognitive. And when someone is a non-speaker, it doesn’t in any way imply that they have a cognitive issue or shortcoming. It’s it’s completely a motor thing most of the time. What happens is you have a student who isn’t able to speak. Usually there’s some other stuff. What they have going on is what we would call A praxis. And I’ll talk about what A praxis is, but to get there, we should talk about what Praxis is. Praxis is when you have the ability to interact successfully with your environment. It has steps that include getting an idea, you plan it, you sequence, you organize, then you execute, you do what it was that you planned, and then you adapt on the backside. When we’re able to do this and we’re able to complete tasks, we put together purposeful movement patterns, and then this is how we get through our lives. This is part of motor strength, motor learning, the way we process sensory information, it’s body awareness, it’s knowing where you are in space, balance, coordination, these kinds of things. It’s also executive function. So the example that I was given when I was learning this is to think about when you learn to drive. Well, I’ve relatively recently taught a kid to drive, so it all came back to me not too long ago. In those days when I was just learning, what I remember is that everything was a choice. You have to remember not to slow down when you look over your shoulder to see if you can change lanes. You have to keep your speed and change lanes and make sure that there’s not a car there. And all of this is conscious thought. It’s stressful, it feels overwhelming, you’re pretty sure you’re gonna get it wrong. And there’s just all of these things that you have to consider at once. But with time, how many of us have driven home and not even remember the way that we took? It just becomes an automatic thing. There’s a lot of things in life that are like that for us, whether it’s eating, talking, playing a sport, you know, learning to kick a ball or throw a ball at first, it’s a little awkward, but then it just becomes part of what we do. For me, a recent example was learning how to use a weed eater. It didn’t feel a natural motion to me. You have to kind of keep the bottom part parallel to the ground and but still move it and not run over the cord and not hit the sprinkler heads. And I took some pretty good divots out of the yard trying to figure that one out. But with time and with practice, it just becomes another thing that you do. You get out the weed eater and you edge the sidewalk or whatever it is. My students and for other non-speakers who have apraxia, praxis breaks down. And when that happens, you get a situation where even though you know what you want to do, even though you understand what you need to do or what someone has told you to do, you’re not able to make your body do it. So the brain and the body, there’s a disconnect there. So they can know that they want to stand up and go into the kitchen and get a drink of water, but they’re not able to initiate that motion. What happens is we try to coach that motor. Instead of saying, hey, stand up and go get a drink, we would say push up onto your feet, push up from the chair onto your feet, break that down into little pieces, think about moving toward the kitchen. Let’s turn our body this way, like those sorts of things to help the person sort of connect that in their brain because their brain isn’t going to do it automatically. When someone has apraxia, it affects all kinds of stuff. It affects potentially the way that they store memories, the way that they process emotion, their posture, the way that they speak or their ability to speak at all, perception, thought, just all kinds of things. For some, they have issues with initiating a task and or with inhibition. So starting something or stopping it once you get started, those can be difficult for people with apraxia. I think an example of apraxia where that I think a lot of people probably would be familiar with is imagine or just think back to someone that you know or even that you saw on TV that it had a stroke and isn’t able to move some part of their body. Now they know that they’re trying to raise their left hand or whatever it might be. It’s very clear they understood the instruction, but as hard as they try, their hand won’t move up off the bed. They just can’t lift it. Their brain wants to, but it’s not able to connect with those neurons to bring their hand off the bed. And it’s that same sort of situation with my students and with um non-speakers who have apraxia. There’s also sensory stuff that comes along with this situation. We talk about sensory motor differences. The motor is pretty obvious. We break things down into little pieces and we learn by repetition, just like we did when we were driving or whatever. Sensory stuff I didn’t understand as well. We’ve always talked about some people are sensitive to sound or some people are sensitive to light. I had said the words, I had heard the words, but I didn’t really think about what that was like. I encountered this really cool, it was a short on Disney. It’s called Loop. I read about it and I thought, oh, that’s kind of cool. I’ll give it a watch or whatever. And I pulled it up and watched it and I was blown away. It’s this nine-minute little video, and in it, you see from the perspective of someone who has apraxia, who has autism, and who really just processes the world very differently. The character’s name is Renee. And when you look from Renee’s perspective, everything looks fuzzy. The light looks different, space distance looks different. You see that she’s not looking directly at people’s faces when she’s talking. Like everything is just a little bit different. And it’s because they’re trying to show us life from her perspective. Now, she’s got a partner in the activities that they do, and uh, his name is Marcus. And from Marcus’s perspective, everything looks like I would expect it to, like it does when I look at things, and like it typically does when you watch TV or whatever like that. It’s just perspective of a person who’s looking, and which is very standard. Things are centered, things are clear. It’s what you would expect. So they go out together, they’re canoeing, they have this little, it starts off kind of rocky, they figure each other out, and another interesting thing overlapping all of this is that in the video, Renee has it looks like a phone. There’s some kind of device, it looks like an iPhone or something, and there’s a button that she pushes over and over and makes this sound, and then it barks like a dog, and it just she pushes it over and over and over, and it’s clear that it brings her comfort. Marcus doesn’t understand. He has obviously not, it’s not something that he does. They kind of work it out and he kind of comes to understand sort of why she does it. They canoe across the lake, and there’s a scene where Renee puts her, she takes her hand out of the boat, and she’s asked to go across the lake by indicating that she wanted the bathroom, which is on the other side. So he took her across and they got there. She put her hand out of the canoe and she’s feeling the reeds that are sticking up from the water, like the grassy reeds. She likes the way that feels on her hand, and she is able to communicate to Marcus to do it again. And so they go back and forth a couple times, and then he’s like, okay, this is the last time, that’s enough. And it’s kind of funny, and some stuff happens, and then she has this really dysregulated moment. She just really struggles. Things didn’t happen in the way that she expected them to, and she just she’s really upset. It looks like just a very emotional sort of meltdown, a lot of vocalization. She’s noisy, she’s yelling, crying, she hides under the boat, and she isn’t able to pull her body out from under that boat for quite some time. We see the passage of time by the changes in the sky and whatever, like you do in a little short video like that. And eventually they figure it out. And the two of them, Marcus, is able to move from a position where he’s very separate from her and not understanding to a place where he’s sitting beside her and they’re actually interacting as friends. And it’s just it’s the neatest thing. Like I said, it’s probably taken me longer to talk you through it than it would take you to just go watch it. But it just was really impactful for me to see that video and just to really get a better understanding of what sensory differences are, the extent to which they can really impact somebody’s life. It’s kind of a big deal. I know some of my students, they don’t uh they struggle with just the flicker that comes from fluorescent lighting. And those, I mean, nobody really likes that. It’s not flattering, it’s not comfortable with your eyes or whatever, but some of the kids are really sensitive to that. Some of them are sound sensitive. So if somebody else is having a day where they’re excited or struggling and maybe just a little more vocal, that student might wear headphones that day. And so you know, we see that a lot too out in public. We see kids with headphones, and I think we tend to make assumptions sometimes, like, oh, that kid can’t go out without listening to their videos or whatever. It may be a situation where that’s just a need that they have to manage their sensory regulation. For me, that’s kind of what I’m trying to get across here is that things aren’t always what we expect them to be in a situation like this. If you’ve got a kiddo who is a non-speaker, or if you know a student or a kiddo who’s a non-speaker, or you even just run across one out in the world, really quickly you learn that these kids are so competent, they’re so bright, they’re so different than the assumptions that society makes about them. And that’s something that we do, just in terms of the way that we do education with students like this. The number one overarching thing that we always, always try to do is just presume competence. Um, this doesn’t mean that we presume that the student is brilliant already, that they know everything. It’s not like that. What we presume is that they have the ability and the interest in learning, and we put students in age-appropriate curriculum at age-appropriate grade levels. Just like with any student, we make adjustments as needed. Maybe it’s a little easy, it’s a little tough, whatever. We make those adjustments, but we get students who come to us that are like 15 years old, and over and over they’ve been just taught their colors and their, you know, the basic numbers. And it’s heartbreaking to see that. These kids have been just kind of beaten down by that. Meanwhile, they’re as as smart as as their peers in the high school up the road, you know, they’re 10th graders doing geometry. They come to us and we just always try to presume that competence. I’ve yet to see a situation where it was wrong. When I started here at the school, what I one of the first things that I was taught is that it’s it’s the least harmful assumption to just assume that they’re competent, to assume that they’re bright and capable of learning. Like I said, it’s just, it’s never let me down. Sometimes you get a situation where just the lack of exposure might have been problematic, especially when we’re talking about math, you know, something like that where you have to have foundational skills in order to take the next step. But if we’re talking about something where a student is reading, they’re getting a lecture, they’re just learning in a typical way, they have absolutely the same ability to remember and process that as anybody else. And a lot of times it’s shocking how much more they have. You know, it makes me think about sort of the emotionality of all of this, right? Going back to that little video, Renee has just a really dysregulated little minute there in the video. Her emotions get the best of her, things aren’t going in the way that she expected them to, and a lot of these kiddos, they value routine, they value being able to predict what’s gonna happen next. You know, I think there’s comfort in knowing what’s gonna happen in your environment. When something changes there, it’s difficult. People make assumptions, I think, about these kiddos based on what they might call behaviors. I know I certainly did. I I didn’t know. I took what I saw at face value and it brought me to a place where I thought things that weren’t true about people that had differences like this, apraxia, autism, sensory motor differences. I think, but in actuality, a lot of those quote unquote behaviors, it’s dysregulation, it’s emotionality that isn’t, it isn’t able to be processed well, or it’s a body that isn’t responding the way that the brain wants it to. It’s frustration. These kiddos, they live life very close to the fight or flight response. It doesn’t take much, sometimes it’s not even clear what it what caused it, but it doesn’t take much to get there, and then you’ve got dysregulation. Imagine that. I mean, imagine a life where all of these emotional things happen, right? You’re frustrated. It’s regular life stuff plus the inability to communicate effectively. You feel it, you feel it, you feel it. The rest of us talk it out, right? The rest of us, we might do it in a healthy way and chat with a spouse, a friend, a therapist, whatever, and get through those things, but these kiddos don’t have that option. So until they’re able to communicate by spelling, by typing, it just stays in there. So there’s that piece. The plus side of all of that is in all of that time where if there’s not a lot of output, there’s tremendous input. You get a situation where a student learns how to spell, a kiddo learns how to spell, or even an adult who’s been a non-speaker learns how to spell, just the stuff that comes pouring out is just sort of mind-blowing. It takes time. It’s not an overnight process, but so many parents that I’ve just interacted with were just shocked. They would ask their kids stuff and the student would know the answer. And the parents like, how the heck did they learn this? Where did this come from? I’ve never taught them that. They weren’t exposed to that in school, but they’ve been taking it in all these years. Everything that they heard, they stored it. It’s kind of neat to me when these kiddos come to school and they’ve not had an age-appropriate education, but maybe they’re eight, nine, ten years old, and mom’s like, I don’t know. Maybe we should look at maybe you know, for second grade, we just we don’t have a lot of content. And I’m like, you know what? I think you’ll be very surprised by how well your student does in third, fourth, fifth grade. Um, and it’s just it’s neat to me, it’s always neat. But this speaks to testing methods, right? When you have a student or a kiddo and you’re trying to do testing, I mean, think about it. How did we all do that? There’s gotta be output in a way that makes sense. And so when you give a kiddo like this a computer-based test or a multiple choice test, or even you want to sit there and interact and do it verbally, how this person has no chance at expressing what they know. It’s in there, they just can’t get it out. A lot of the time, most of the time, in a school setting, even a clinical setting, this person may have mistakenly been judged as slow or behind because they just couldn’t answer the questions in the way that they were being asked. It’s something to keep in mind, right? Just that we always need to presume competence and to know that the person we’re speaking with, or two, I guess, it’s not their fault. And they there’s nothing they could have done differently, but the impression that you have is likely false. So I’ve learned a lot about just teaching that age-appropriate content, uh, working with each individual student where they are on their fine motor skills, their gross motor skills, because again, with the apraxia, everything takes repetition, and you have to learn a specific thing just through just tremendous iteration over and over and over before they’re able to generalize that skill or that motion or that ability. We use the Florida virtual school curriculum at my school, and then we just adapt it to make it work for spellers. So that’s kind of cool. We have PE class, everyday movement class, where our students do a fair amount of sort of heavy work. They push weights, they pull weights. This helps with pressure and regulation, and also, of course, physical strength and gross motor. But there’s some sensory stuff that that helps as well. So, in addition to the you know, the five senses that we all have, we have also sort of a vestibular sense that tells us where we are in space and which way we’re facing, that sort of thing. There’s proprioception, and this is it’s where we receive information through muscles, bones, ligaments, tendons. We were able to have a sense of pressure or temperature, what’s going on with with our body externally, like where we are in our environment. And there’s interoception, which is what’s going on inside the body. And all of those are affected by apraxia. So when you’re working out a student like that, it helps to, if they’re able to push against weight, if they were struggling with sort of their vestibular sense, they’re able then to have a better idea where they are and to create markers for themselves going forward so that they have a better understanding for themselves of what their body is doing and where it is in space and that kind of thing. It supports regulation, it helps with potentially dysregulation. In terms of that kind of stuff, we always try to be proactive and we always try to prevent it. A lot of times you can see it coming. A student is frustrated or sad, excited, you know, they might be noisy, they might make sounds, yell, squeal, dump things out, push, pinch, whatever. Sometimes that’s just a regular day, and sometimes it’s a tough moment. Sometimes you can see it escalate, sometimes it seems like it came out of nowhere, but the student needs support in those moments. Something that I’ve learned there that might help maybe you if you’re interacting with somebody who has some of these issues, or if you’ve got a kiddo, is that really only one voice is the right way to speak into that. So if you’ve got a kiddo who is experiencing dysregulation, you don’t want two or three people trying to soothe them, trying to calm it down, you know, trying to offer encouragement. Because even with the best of intentions, it’s just more sensory input. It’s overwhelming. You want one voice, one person to support that person until they’re able to find regulation. And if that person, if the support person’s regulation should be impacted, and sometimes it is. Sometimes it’s frustrating or scary or just kind of overwhelming that way or even just physically exhausting. If you need to tap out, tap out. But it’s important to not let your regulation or lack thereof impact a student that way or a kiddo that way. We try the best we can to give our students as typical an experience as we can. We do a lot of the things that regular typical students would do. I have five seniors this year graduating. I believe that all of them are gonna go on to college. And what that looks like for each of them might be a little different. One class or two classes, and whether they’re gonna do it online or they’re gonna try to go in person or maybe a hybrid situation. But what these kiddos will always have with them is a communication partner, somebody to spell with them. So they won’t go alone, they’ll go with this person that’ll help with regulation, help with spelling, communication. It’s just really neat. It’s really, really neat to me to see kiddos that maybe came in having only been exposed to just the, you know, what we would consider preschool basics, and then just going through the school process like anybody else and graduating and going on to college. It’s just really cool. And I think the thing to say about that is don’t give up. If you’re the parent of a kiddo with sensory and motor differences, or the friend or the teacher, no matter how you interact with this person, no matter the disability, no matter the situation, there’s a path for your kiddo that’s gonna maximize their opportunities. They’re gonna learn, they’re gonna grow, they’re gonna make progress, just like their more neurotypical friends, siblings, cousins, classmates, whatever. And God made us all exactly as we are. Nobody is any way that God didn’t mean them to be. It’s for a purpose. The purpose is that his glory can be seen through any of us, through each of us, all of us. These kiddos, they bring so much. They bring so, so much. The same competence, the same intelligence as everybody else, and such a beautiful perspective. They’re so patient, they’re so energy sensitive. They, a lot of them will write, you know, poetry, that kind of thing, just to kind of help with some of that emotional processing, things that have been trapped inside for the longest time, and it’s just amazing. Like they’re just amazing. That’s the thing, and I say this all the time, but nobody told me how much I was gonna love my students in the hiring process, like in the days leading up to it, I was onboarding, whatever, and everything was about training, everything was about sort of merging me into this position as seamlessly as possible. But that piece never came up. Nobody told me that I was just gonna fall like head over heels in love with these kids. They’re, I love them. They’re my kids. Just absolutely, absolutely amazing people. The spelling community is also pretty incredible. The parents, so parents are generally very involved in the lives of these spellers because most of the time the primary communication partner is a parent. You see a lot of moms. These parents, they bring their kids together, they come together. It’s a neat situation because there’s commonality there. It’s hard. I remember as a young mother of relatively neurotypical kids being different when my friends didn’t have kiddos yet. It was just me and I had the stuff that comes with having a baby: the car seat, the diaper bag, the, you know, all the stuff, the cup, the whatever, and you get somewhere and you don’t have something that you need. Yeah, you gotta just stroller everything. There’s it’s all there. You get somewhere and you don’t have what you need, and it’s just a disaster, and it just feels very messy and clunky and whatever. And when you’re with people that don’t have kids at that age, you just really realize how you’ve just got all this stuff going on, and you probably should just stay home, and it just it just feels bad. And you’re I mean, your friends aren’t really thinking that. They’re thinking that your baby is beautiful and they wish they knew how to help you, they wish they knew how to step in and provide support. And I think that’s the case with our spellers as well. But what their parents find in the spelling community is other people in the same boat. Their kiddo is maybe noisy, making sounds or you know, stimming in a certain way that maybe draws attention. And so’s that other kid, you know, and so is this person’s daughter or this person’s son. They have a feeling of safety and just connection with people that they have a lot in common with, people that can understand the struggles that they’ve seen and the things that as they’ve lived and the experiences that they’ve had, that kind of stuff. It’s just really neat. It’s really neat to see the bond between the parents and the kids, and the parents and the other parents and the kids with each other. I don’t see a lot of kiddos or young people spelling really with each other. It happens some, but it’s just really neat to kind of to just see the camaraderie and the connections between them, among them. And ultimately, some spellers are able to grow up and live semi-independently or independently. There’s a lot of research toward this and inroads being made in just kind of ways things can be changed or modified, accommodations that can be made to support. I know here in our area, there’s a place where adults of a variety of ages, pretty young to pretty much older, live together. They live as independently as they can. There’s support there, whether it’s medical support or social support or just the things that they need to keep going every day. Some of them work outside their home, some of them work inside their home, but just activities and whatever, and so that people stay safe. But they live pretty autonomously. They’re not with their parents forever and ever. They’re able to just sort of have that experience that young adults prize so highly. I’m aware of some communities where a percentage of the homes, the units available, so apartments, let’s say, or condos, are held for people with disabilities and they are able to live among more neurotypical people or people who don’t have disabilities, and they do cool things together. They, you know, they have dinner side by side, they’re friends in the way that they would be with anybody in the world, with support and people getting information, education, we’re able to reach a place ideally where the disability falls away and you just see the person, you see who they are, what they value. And just like with anybody else, you learn to get to know them and care for them, and we just work it out. How many people make all sorts of allowances and accommodations for me? You know, we we all do it for each other. And so when we get to a place where a disability like this, a sensory or motor difference, isn’t holding people back. I think that’s kind of the goal across the board. You know, the same is true in schools, in churches, in in all sorts of institutions. I think we’re starting to see more, just more education being shared, a better integrative process in a lot of things. I think there’s still a lot of work for us all to do. And I’m certainly no expert. Like I said, I’ve been doing this for just shy of a year, and I’ve just kind of spewed through a crash course in kind of what I’ve been given and what have you. But it’s just amazing to me. These kids are incredible people that, if not for the ability to communicate, could really be kind of overlooked in society. And, you know, if you’re the parent of a non-speaker or a minimal speaker, you know what’s in there. You know your kiddo, you know, and I would just really encourage you to just don’t give up. Keep pursuing options. You know, look at whether it’s spelling or some other form of, you know, communication, just keep trying things until you find what works for your kiddo, for your family, and just know that the person in there is competent and loving, and they’re just waiting for the chance to say it all. I think with that, I’m gonna pray us out. And I just really look forward to learning more, and as I do, I’ll come share it with you guys. So let’s pray. God, we come before you just so grateful for the differences among us, for the ways that we’re different in communication, that we’re different in the way that we live and choose and the things that we value. Because of this, we’re able to just more fully enjoy the just the beautiful creation that you’ve given to us and interact with each other in different ways and lean on each other for strengths and for talents and gifts that each of us needs. Uh, we’re allowed to be interdependent that way because you made us different. We thank you for the opportunities that are available to all of us, and we thank you for just the the educational opportunities that are coming, um, and that more and more people with sensory and motor differences and their families are just learning about some of these options and that people are getting opportunities that they haven’t had in the past. We pray that the world would receive those with these kinds of differences just with love and compassion and presume competence above everything, knowing that they are exactly as they’re meant to be, that they’re bright and intelligent and want to and are able to learn. We just ask your blessing for safety, for love, for inclusion, and just appreciation for all of us, each other, and the differences among us. We ask all this in Jesus’ name. Amen.