OTS 125: Exploring Dyslexia: Understanding and Supporting Students
- Jayson Davies
- May 29, 2023
- 39 min read
Updated: Aug 19, 2024
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Welcome to the show notes for Episode 125 of the OT Schoolhouse Podcast.
How much do you really know about dyslexia?
Join us as we explore this often-misunderstood learning disorder. Jayson and Penny dive into the importance of evaluation, therapy, and the crucial support needed for teachers and students facing dyslexia. Tune in to learn more!
Listen now to learn the following objectives:
Learners will identify the ties between dyslexia and mental health.
Learners will identify what dyslexia is and the common misconceptions.
Learners will identify effective teaching strategies for supporting students with dyslexia in the classroom.
Want to Earn CEUs for listing to this episode?
Members of the OT Schoolhouse Collaborative can earn professional development by listening to this episode of the OT Schoolhouse Podcast and others.
Join the OT Schoolhouse Collaborative to earn professional development from the OT Schoolhouse Podcast and get support as a school-based OT practitioner.
Guest Bio
Penny Stack, OTD, OTR/L, CLT, has over 30 years of experience as an occupational therapist, which includes working with children who have special learning needs. Penny is certified in Handwriting Without Tears, has a master’s in Occupational Therapy from Samuel Merritt College, and a doctorate degree in Occupational Therapy from Loma Linda University. Her research on closed-head injuries and cognitive retraining has been published in the Brain Injury Journal.
Penny’s current research is entitled, Dyslexia and Its Impact on Occupation: The lived experience.
Quotes
“So as occupational therapists and teachers and people who support and work with children, we have something that really is unique to us, and that is the skill of observation, and it's powerful”
- Penny Stack, OTD, OTR/L, CLT
“It sounds like dyslexia is a symptom of a problem, not the actual problem itself."
- Jayson Davies, M.A., OTR/L
“They have the ability, but their performance is much lower than their ability, that gap. That's the dyslexia”
- Penny Stack, OTD, OTR/L, CLT
“If they have a specific learning disability, they fall under an IEP with that category, the likelihood of them having dyslexia is most likely pretty high”
-Penny stack, OTD, OTR/L, CLT
Resources
Episode Transcript
Expand to view the full episode transcript.
Jayson Davies
In school based occupational therapy, we often talk about dysgraphia and how that impacts students. But what about the other dy S word common in the educational world? I'm talking about dyslexia. Today we are chatting with occupational therapist and founder of dyslexia RX Penny stack. Penny found her way into dyslexia through a personal story, which she will share with us in just a moment. But now she specializes in supporting individuals of all ages who have dyslexia. Today, Penny is here to help us understand the complexity of dysgraphia as a learning disorder, the importance of a proper evaluation and strategies for supporting students who have dysgraphia, as well as strategies for the teachers who help support those students. And before we jump into our chat with Penny, I wanted to let you know that members of the OT schoolhouse collaborative can earn one hour of professional development by listening to this episode, just after listening head into the podcast base and take the episode quiz for this episode. If you're not yet an OG schoolhouse collaborative member, I invite you to check it out at OTSchoolHouse.com slash collab. As a member you get access to live and recorded professional development. In addition to resources, research, live group mentorship hours with myself and a supportive community of school based OT practitioners. You also of course, get access to professional development by listening to the OT schoolhouse podcast. Learn more about OT school house collaborative at OTSchoolHouse.com slash collab or by checking out the link in the show notes. All right, now let's go ahead and Cue the intro. And when we come back, it's all about dyslexia with Penny stack.
Amazing Narrator
Hello, and welcome to the OT schoolhouse podcast, your source for school based occupational therapy, tips, interviews and professional development. Now to get the conversation started. Here's your host, Jayson Davies, glass is officially in session.
Jayson Davies
Penny, welcome to the OT SchoolHouse podcast. How are you doing today?
Penny Stack
I'm doing great, Jayson, thanks for having me.
Jayson Davies
Yeah, wonderful. It is such a pleasure to have you. You know, when it comes to occupational therapy, a lot of people think about dysgraphia. But there's another learning disability that OTs can support. And that is dyslexia. And that's what we're here to talk about today. And as we dive into that, I just want to give you a moment to first kind of share a little bit about your background as an occupational therapist, and how you got to where you are today.
Penny Stack
Sure, I appreciate that. So I've been an OT for about a little over 33 years, give or take. And when I started out in practice, I did not even know what dyslexia was, and certainly was not my area of expertise, my areas of expertise was working with traumatic brain injury. And then just like many other OTs, I've worked in a variety of settings, including school systems. So it wasn't until I had my daughter, and we started realizing that she had dyslexia and again, never thought I heard of the word until she was diagnosed. To be honest. I started asking my colleagues speech therapist OTs, hey, what do you do to treat dyslexia? And the number one? Well, two, number two answers, I got the most frequent answers were we don't? And I said, Well, who do you refer to? I don't know, like they had, there was no context. And so I did what a lot of moms do, and just brought her to a variety of after school, academic programs, tutoring, things of that nature. And when I realized that her changes weren't permanent, and I was spending 1000s of dollars. I mean, I was taking out loans at this point to provide sparring for her, I remembered that I was an OT. And I say that tongue in cheek, because I think as parents, we focus on being the mom or the dad or the caregiver. And sometimes we forget what we do for a living. Yeah. And we're in panic mode, right? We just don't want to see your child suffer. So I thought, well, let me try something. I have an area of expertise in traumatic brain injury, let me kind of think about it in that context. And I in my head, I had to take away the dyslexia diagnosis. And I thought, what if she came to me with a traumatic brain injury? What would I do? And so I just turned into OT mode and start looking at her executive cognitive function. I started treating that and lo and behold, I saw progress. Why? Because the brain has plasticity and is huge lightbulb moment. So that's how it all started. I am the founder of dyslexia center of Tulsa and the Educate to advocate podcast which I successfully sold last year. And during that time, during those 12 ish years, I worked with individuals, the youngest was four oldest was 64, and helping them with dyslexia and no one really thinks of OT when they think of dyslexia, they think of teachers or reading specialists, or dyslexia specialists and I know we're going to get more into the role of Ota in a little bit. So that's what I was doing. And then after I sold, I was like just riding the wave of having some free time thinking, Oh, this is great, you know, and but then I had this nagging thought and that was that whole mental health side of dyslexia, and the prevalence rate of suicide, anxiety and depression, and then I launched dyslexia RX, because now that is what I am addressing. And so that's kind of I think it found me more than I found it.
Jayson Davies
Yeah, definitely sounds like it. So how's your daughter doing? I'm assuming she's thriving in the world today.
Penny Stack
That is a great question. And I do want to say this, because I knew this is going out as a podcast. But when my daughter was growing up, I never spoke about her or put her on social media or referenced her. But now that she is an adult, I do have her permission to share her story. And I just, I always feel like obligated to let people know I'm just not talking to my daughter, like she's aware. So I remember I think my when I hit rock bottom, sitting at the bottom of my stairs, crying, wondering if she was ever going to be able to take care of herself. I'm talking minimum wage job. Just getting by I was in sheer panic. And I say that because a lot of parents feel that but will not express that because they feel like a failure. Now I can honestly say she's a junior in college. She is majoring let me see if I get the major she changes all the time. So let's see if I can get this right. Something, I think, a minor in Religion, organizational leadership and Women's Studies, she'd like to work for profit. That's really where her heart is. And I am really a proud mom to say she's never failed a college class. And I say that because I have failed many college classes, right? So I just like I, I have so much respect for her. She's done really well on our society sorority working volunteer hours. I don't know whose kid she is. But I am just so pleasantly pleased. And as much as I'm proud of her, I also share that story because it is possible, it is possible to have dyslexia and be very successful.
Jayson Davies
That's great. That's great to hear. Thank you for sharing that story. It's so nice to hear those good stories. So as I kind of alluded to a moment ago, we're here to talk about dyslexia. And when it comes to an IEP, there's a specific learning disability. That's what most of our kids have as their primary qualification for for an IEP, especially with dyslexia. But before we dive into those specifics of the IEP, I just want to ask you for kind of that working definition for dyslexia, as we're going to talk about it today. And this could be the DSM version, this could be your version, I just want to hear how you kind of put together dyslexia.
Penny Stack
So I know this is audio only, but you can see me smiling, almost breaking out into laughter because that is the golden question. There is no standardized definition for dyslexia. With that said, there's also no standardization for what needs to be tested or how it needs to be tested, which I think leads to a lot of confusion, the International Dyslexia Association, and Dr. Sally Shaywitz, with Nielsen her for creativity and dyslexia, they both referenced dyslexia to be a language processing disorder. So then what the heck is OTs doing in the mix? Right? And we'll get back to that, because I know that's the big question here. And my definition of dyslexia, it's a, it's a snowflake, it is different, and everybody characteristics are very different. But to me, dyslexia is not about reading. And I want everybody to just sit with that uncomfortableness for a minute. Dyslexia is not about reading. And I used to be terrified to say that out loud, to be honest with you. And I say that, because when you look at all the dyslexia programs that are out there, they are mostly developed by educators. And none of them address executive cognitive function or everything else that goes into dyslexia. But yet, when you look at the research behind it, it's in there. And so the question we ask ourselves is, why is that not addressed? Why? Because educators are the first ones to really see that children are having difficulty with reading. So they're staying in their wheelhouse in their lane, and they're specializing programs that will accentuate reading, which is the exact thing to do. However, it's really important to understand that when we have a child coming to us with dyslexia, if we assume it's just about reading, we miss 90% of what we can do to treat. And so to me, when I think about dyslexia, what is dyslexia? I think about the whole person, I think about dyslexia as being something that defines a path someone might take it Is this big reason why people make choices about occupations they engaged in, and I'm not talking about a job, but maybe leisure activities they want to do or hobbies, they will steer away from one thing because maybe of shame or feeling that they can't do something. And to me, that's what dyslexia is. If we think dyslexia, it's just about reading, and we only treat reading, and we make the assumption that reading will make everything better, we have really missed servicing the person.
Jayson Davies
Wow, thank you for sharing that I actually want to kind of chime in with my own little story. Now, I'm not going to self diagnose myself as having dyslexia dysgraphia. Anything else, but part of the reason that I actually have a podcast as opposed to, you know, writing a blog every week or every other week is because for me, writing, typing, putting my words onto paper, or some sort of, you know, visual system is hard for me, I'm much better at talking, I prefer talking. And so that's kind of why I went the route of a podcast as opposed to a blog several years ago. And when I think about that, and what you just said, it almost sounds like dyslexia is a symptom of a problem, not the actual problem itself. And I'd love to let you chime in on that?
Penny Stack
Bingo, I could not have said that better, myself. So it's an iceberg. We've all seen that image of an iceberg. difficulty reading on top, you look below the water, and there's like a gazillion things under the water. And that's exactly what's happening. So challenges with reading or spelling, those are symptoms. That is not the why, let me give you a really easy example. So some people with dyslexia may have difficulty putting letters in the correct order when they spell a sight word. Or they may have difficulty remembering what they're reading. More times than not. If you peel that onion layer back, you may find deficits and visual memory, or spatial awareness. Or you may find sensory issues that they have going on, or lack of integration of primitive reflexes. There's always a why. And what many of the reading programs do is instead of addressing the why they get right into the phonics of it all, which is a very high level executive cognitive function. But if we don't peel that onion, layer back and look at visual memory, all the different visual perceptual skills, auditory processing, are they integrated, other reflexes? Do they have sensory issues? Is their core strength, okay? Like all these things need to our ability to do this high level function? If we do not look into that, then we're leaving a lot on the table that absolute should be getting addressed.
Jayson Davies
Wow. So then when you have a teacher, a parent, someone who cares for a child coming to you? What are some of those key things you're you're looking for when they're describing their child? You know, and they think that their child has dyslexia? What are you trying to tease out a little bit? What are you trying to hear from them?
Penny Stack
Great, great question. So I think that's where the list of symptoms come into play or the list of characteristics. It's almost like a checklist. So you think about somebody that may have a fractured bone, you look at their x ray, you see the fracture, you see the swelling, you see the deformity of the bone, lack of ability to move a lack of strength. So with dyslexia, it's not that clear cut. And you can have two people with this with the same, the same, they present the same meaning their grades are low, and they have difficulty spelling, but their characteristics could be completely different. So what I am looking for the most no matter what story the parents shares with us, is the fact that it doesn't connect. For example, you can have difficulty with word retrieval, but that doesn't say that you will have difficulty spelling. You could have difficulty with processing speed, but it doesn't say you'll have difficulty with reading comprehension. You can have difficulty with writing, but it doesn't say you'll have difficulty with written expression. So one doesn't lead to another and then the other thing you will always hear is when somebody has dyslexia, after a parent goes down the list of all their concerns. 100% every single parent or caregiver, this is what will come next. But Sally's really smart. That sentence will always be in there. It's not bright. It's not genius. It's not gifted, they use the word smart. And then they will tell you in great detail all the things their child does ever Be Well, and that's when your light bulb goes off and the bell rings, you're like ding, ding, ding, ding, ding. So as occupational therapists and teachers and people who support and work with children, we have something that really is unique to us. And that is the skill of observation. And it's powerful, and being able to pull that out. Because if we have a student who's really, really good at something, but yet this one thing over here, whether it's reading or spelling or comprehending or following directions, but you've got like this little pocket that they are struggling, and they have younger siblings surpassing them. What that tells you is, they have the ability, but their performance is much lower than their ability, that gap. That's the dyslexia and Dr. Sally Shaywitz. Like I cited earlier, she really speaks to this. And there's a lot of research out there that speaks to that. There's also new research coming out saying that may or may not be true, but there's not enough for me to say, Yeah, let's go with that research. It's just I think that research is just emerging, but it's when there's a gap. Now, how is this different from somebody who doesn't have dyslexia? Somebody that doesn't have dyslexia, their story is going to be very different. And what I mean by that, is they're going to be whatever performance level, they they are demonstrating, they are like that across the board. There's nothing in contrast, exceptional to where they're struggling, if they're struggling in one area if they're struggling at all.
Jayson Davies
Gotcha.
Penny Stack
And I think that's when you think about what am I listening for? I'm looking for that difference that that big contrast of ability versus performance.
Jayson Davies
Okay, great. And so now, you know, you're doing a lot with with dyslexia, you're doing evaluations, you're, you have a whole team that works with plenty of kids and adults, it sounds like that have dyslexia. You're an OT, but in a lot of parts of the world. You mentioned right, like teachers are oftentimes the first one is to kind of get that concern. But are there other professionals that are looking into this school psychologist, clinical psychologist, whatever it might be? And then a second part of that question, I guess is, how are they even attempting to diagnose this? Are there tests out there that they use? Or what does that look like?
Penny Stack
First of all, I love that you think I can remember a two part question? I will do my best. Okay.
Jayson Davies
The first part is the people who's who is evaluating dyslexia, that was my fault.
Penny Stack
That's, that's, it's all in good humor, right. And so only a psychologist, clinical psychologist, neuropsychologist can diagnose and I think that's really important, because there are a lot of providers out there such as myself, who can do evaluations, and can screen for dyslexia. But as an occupational therapist, as you know, we cannot provide a medical diagnosis, we can do a treatment diagnosis, but not a medical diagnosis. And clarifying that with parents or families, I think is first and foremost and know what the difference is. So what I always share with parents is I do an in depth evaluation, but I do it to identify areas of concern for treatment, not necessarily for diagnosis. So with that being said, when I started looking at dyslexia, there was not at the time, there was not a lot of research on occupational therapy and dyslexia. And the research I did find, which is pretty much the research I'm finding now as well, is more on the visual perceptual visual motor side. Okay, right. So if you have somebody who has difficulty with letter reversals, testing their spatial awareness, or testing their, like the Jordan left, right, test reversals, those are all really important assessments to do. So. I use a lot of standardized testing. I also have a screener on my website that lists I mean, there's a gazillion questions, there's probably 50 or 60 questions there. And it's looking at their lived experience, because their story, especially with older children, or adults is super important. Because if you have somebody that's had a higher education, they will do well on all your testing. That's true, but it doesn't mean they don't have dyslexia. So I digress, you asked me about testing. Okay. So let me go back. Okay. So for example, I will administer the barre visual motor integration because I want to see how much control they have over their pencil and can they copy? I use the test for visual motor tbps tests for visual motor processing skills TVP.
Jayson Davies
Processing or Yeah, something like that
Penny Stack
short perceptual There we go, sir. Visual tbps for whatever that is, Google it, look it up. Not remember the long name of it. But there's a lot of discussion about that because I know that Barry has a visual perceptual test as well. And the motor and the MVP T is also a visual perceptual test, I've used all of them, let me tell you the why and why not because this is where we get into the weeds with. So I don't use the berry, visual perceptual test, because in my mind, it's a spatial awareness test.
Jayson Davies
Okay.
Penny Stack
When you think about, you're looking at shapes, and you're doing those designs. But what I and I am the MVP at the motor, free visual perceptual test, I think that's what that stands for. It only gives you one overall score, and it doesn't break out each each sub test from a statistical standpoint. So you're having to guess let's say, there's 10, slides on, I don't know, visual closure, you would have to count, they got five out of 10, they got 50%. So it's not very statistically sound to do it that way. I prefer the tbps. Because it looks at visual closure, visual perceptual skill, spatial awareness, visual memory, for your ground, it looks at all of these, and I believe there's a few more, and they give percentile ranks on each of them. So the difference is, let's say, you did the berry, spatial awareness tests, and they scored Fine. How do you know what their visual closure is? Ya know, how do you know your ground is down. And on the MVP T, they have an overall score, let's say they scored in the 30th percentile rank, which is well, with an average check. They're great, no problem. But on the tbps, what if they score in the 30th percentile rank, and maybe their visual closure was in the fourth percentile rank, and their spatial awareness was in the 98th percentile rank. So when you add up all the sub tests, sure, it comes to 30. But you've got this visual closure in the fifth percentile ranks, you could tweet that out. And you can treat just that. I think that's what's so very important when you are looking at evaluation. What's the utility of it? How can you use it, I also use the tests for information processing skills, this looks at short term working memory wanting to and delayed recall, I use the cetop, the Comprehensive Test of phonological processing skills to tease out phonological awareness, phonological memory. And this is a great assessment for speech therapy as well. I do the scan three auditory screener. What I love about it is it's a standardized screener. Anybody can do teachers can do this OTs, any discipline. Now, just to be clear, only an audiologist can diagnose auditory processing disorder and speech therapist, it's in their domain of practice to treat it. But as OTs we can screen for it. And so why do we screen for it? Because when we have a client that and we're student and I'm sure you guys, you know, everyone's listening to this can relate to it, you ask a child, you know, go pet the cat, and you look around, and they're grabbing their hat. They're just not processing the sound, it's not auditory acuity, can they hear it, they may not be able to process blending sounds correctly. And, and so screening for that auditory processing is really important. I will say with that, though, it is very rare auditory processing is only two to 3% of the population. And if you have dyslexia can go up to 5%. But boy, if you miss it, that kid can be on years of services without any progress or very limited progress and be very frustrated. So it is really important to catch even though it's its prevalence rate is very low.
Jayson Davies
Gotcha. Gotcha. You know, I loved how you talk about finding evaluations that are actually looking at what we want to look at, you know, when I use the Rab Mo, which is similar to the VMI. You know, I try and look at the visual motor integration part. And compare that to the visual spatial part. Yeah, but that one's very similar to the VMI. In the sense that, like you said, you're not looking at closure, you're not looking at some of the other fine tuned, I guess you could call it skills that are really involved with visual processing. And that's why I tend to like the D TVP, developmental test of visual processing skills. And they have one for adults, one for adolescents and kids. But that one, like you kind of mentioned, it gave me more information than just overall processing. I really liked when my school psychologists use the VMI, because then they're kind of able to say, Okay, thanks, something's up. Now, I'm going to pass this over to the OT to do a little bit more go more in depth with some of those. Those tests that can be a little bit more specialized, I guess you can call it so. Yeah, that that's great. Thanks for sharing so many of the actual assessments that you use.
Penny Stack
You're welcome. i There are a few more but one other one I want to make sure I mentioned is the sensory profile measure. Because it's really important that we consider what's going on in their environment especially. I mean Kids are not the same as kids were 2030 years ago, we have COVID, which really changed how children develop. We have children, we have technology, which really changes how much children spend time outside and playing. And so I really take a look at that to see if it's an issue of sensory issues or just lack of opportunity. Because again, if we don't address these core foundational skills, that higher expectation of reading will be pretty challenging.
Jayson Davies
Absolutely, thanks. Thanks for sharing that. There's always we always have to be sure to look at that sensory profile. For every I don't know, if really, for just about everyone, you know, we all have different sensory profiles. Just the other day, we were talking about how there needs to be a screener if there isn't one already, to give to like teachers so that they can even better understand their own sensory preferences and whatnot. So yeah. Now, staying kind of on the lines of sensory integration, sensory processing. I know from my training within sensory integration, that there tends to be profiles, like there's Vbi, s, vestibular bilateral integration, and there's a few others within just Lexia, do you tend to see some of those patterns kind of emerge? Through all the evaluations that you've done? Are there few particular skill sets that you tend to kind of see maybe even paired with another one?
Penny Stack
Okay, you're gonna love this answer, why did not prepare you for this answer? Okay. So my area of expertise of clinical expertise is dyslexia. I do know that all of these other components make us up to be able to perform. However, I am not a pediatric therapist, to me, they're very different. And so I administer the sensory profile measure. And if they if the child's indicating that they have deficits in any of the areas, I immediately turn the parent around and refer them to a pediatric outpatient clinic or somebody that specializes in treating sensory processing, because that's about as far as my skill set can go. It's just, it's just something that I've chosen to really dive into dyslexia and understand it well. And I think that leads me into the other part that I know we're getting to, but we may, we might just jump into it is the team.
Jayson Davies
Yeah.
Penny Stack
So I do what I do, and I do it well, but that's all I can do. And I've done that with intention. And so if I have a child who needs help with phonological awareness, or associating sound with a letter, I don't even try to address that we have a speech therapist on our team who will work with them. Or if they aren't on my team, I'll refer out for example, I have a play therapist that I collaborate with, that helps me with a lot of behaviors, and just that communication between parent and child. So even though I may test or screen for something, and I think this is really important to share. I think as OTs we tend to think we have to do it all or be experts in it all, because that's we're taught as generalist, but I really believe it's okay. To say you don't know, like, it is totally a and preferred if you really don't know. And in that case, if you know it's not an area of interest of yours, or that it's not your area of expertise, then the best thing to do is develop that team around you in your community. Who can you refer to? Who can you connect with? And so that's pretty much how I've set that up. So back to your sensory question. I don't even know the phrase that you use, like, I don't even know what that is. So that's how.
Jayson Davies
I think what I was trying to I was trying to use that as an example a little bit, but just in when you've done hundreds, if not more evaluations and therapy for students who have dyslexia? Are there certain patterns that you see within dyslexia even like yes, you know, sometimes you might see high visual motor, low visual processing or increased fine motor low, something else. Are there any patterns that you come across?
Penny Stack
Yes. Yes. And thank you for reframing that. So years ago, I started collecting data just for my own understanding of what's going on and how things tie together. And when I was testing the primitive survival reflexes, the number one reflex if they were gonna pop positive, was the spinal galon. And what I thought was interesting about that reflex was if your spinal reflex is not integrated, sometimes it can cause issues with with memory, or, you know, bedwetting or you know, a few other things. And what I found interesting was, when I would look at that and on my chart, I kind of kept track of all the things that would be impaired if they tested positive responded law and then I would compare it like cross reference it with a standardized tests that tested that. And lo and behold, every child that was positive on spawnable, on reflex also had impaired visual memory. 100%.
Jayson Davies
Wow.
Penny Stack
So there is a correlation. And I'm going to throw something out there. And it's just this is I really like to make clear what's research, what's my personal bias? And what's my clinical observation. And so I want to be very transparent and share that this is coming from my clinical observation and maybe my personal bias. i Right now, they say the prevalence of dyslexia is one in five. And I'm starting to question that for a couple of reasons. I'm not quite sure if all cases are being tested. Dr. Shaywitz says that 80% of children with a specific learning disability in the school system actually has dyslexia which is undiagnosed. Okay, I don't know how over under its diagnosed, for example, in Texas dyslexia is very recognized. So dyslexia is a prevalent diagnosis in Oklahoma, it's just emerging to be recognized. So most everybody there has ADHD. What with all that aside, when I take a look, when you talk about themes and prevalence and patterns, when I reflect on all the testing I've done, and the test results and the treatment, and I'm so grateful, I don't diagnose because I probably would have misdiagnosed because Lillian kiss, right? I'm grateful, it's not my responsibility. But let's say we have two kids. And they both are behind in their reading, and their spelling and their scores are very low. And I work on both kids because I work on their executive cognitive function, because maybe they're having difficulties with memory or visual perceptual skills or whatever, one child, after I do all that work with executive cognitive function skills may still struggle. But the other child, I work on all their executive cognitive function skills, and they're fine. The readings always I haven't addressed reading at all, and they're fine. So I'm wondering how many of these children are being tested for reading and tested for dyslexia? And because we're only looking at that higher level skill, they're showing a deficit. And no one's really addressing their executive cognitive function, their sensory, their core, their reflexes? No one's addressing all of that. But if that were addressed, how many of them would be fine? Because dyslexia is not curable? Right? And would we have a more accurate number? So that's the question that research or pardon me that I asked that I can't, I can't seem to shake?
Jayson Davies
Yeah, and, you know, research just continues to advance. And I really, I mean, just with time research advance, and with new research becomes or comes new terminology. And, you know, who knows, so many of our diagnoses could be spider web spiderweb, down into several other potential diagnosis and further that we can better understand better explain better given name and, you know, a behavior to that specific diagnosis, the better that we can treat it, you know, in the long term, like you said, to kids same diagnosis, but need a different treatment methodology, potentially. And maybe they just have a complete different diagnosis. So
Penny Stack
Exactly, and when you think about that, this also comes to mind as therapists diagnosis often don't matter, in terms of what we're doing. I remember working in skilled nursing facilities years ago, when everybody had generalized weakness, when one just had a triple bypass, and the other had a total knee replacement, right? And what do we do we treat what we say? Yeah. And I think is OTs, we just really need to come back to some of the fundamentals that we learned in school, and we're just treating the characteristics that we see.
Jayson Davies
Yeah, you know what, let's stay on that because you just kind of talked a little bit about what it might look like in a older population. All of us have school based OTs, we work with IEPs. And, you know, there are 13, if I'm getting this right criteria, that students can qualify for an IEP, that might be slightly different depending on the state that you're in. But dyslexia is not one of them. dysgraphia is not one of them, right? specific learning disability is right. So I'm assuming that dyslexia would fall under that specific learning disability, and just kind of what maybe an OT a school based OT, should they look for something in the IEP to kind of give them an idea that a student has dyslexia or what what should be in an IEP or what should they look for?
Penny Stack
Right, so just to start off, just to clarify the 2015, the assistant secretary of the US Department of Education Office of Special Education and Rehabilitation, wrote a letter. And he went on to say there's nothing in the IDI a that would prohibit the use of the term dyslexia, dyscalculia and dysgraphia. In the IDA evaluation, eligibility determinations, or IEP documents, all right, I'm just throwing that out there because I get a lot of questions. Why don't they say dyslexia? And I have no idea why, because there's nothing written saying they can't, but they won't, is more happening. And so when you're looking at an IEP, I would look for the diagnosis of specific learning disability. Yeah, and I would specifically look at that, because Dr. Sally Shea, which is research shows that 80% of those with that designation have dyslexia. So it's like a swing and a mess, you'll you're probably going to hit the nail on the head more often than not thinking that way. Yes. And if they have a specific learning disability, they fall under an IEP with that category, the likelihood of them having dyslexia is most likely pretty high.
Jayson Davies
That is a great takeaway. Those are two really big tidbits, I had never heard that language from the assistant secretary of US Department of Ed, that's, that's awesome. I love and the type of person who I love, like finding those little details, because those aren't things that like, are in IDA, the law itself. These are things that come out after the fact and they're little tidbits, I always loved those. So thanks for sharing that. And yeah, I think spot on, if you see the specific learning disability in there, that should cue you in to potentially looking more into dyslexia Great. Now, let's dive more into the therapy side of it. I love talking about both therapy for an individual student, as well as more of that communal type of team therapy that you even kind of alluded to before. And so if we are seeing a student individually, and maybe you have to give us a little background on a student before you dive into the therapy, but what does that potentially look like for you for therapy?
Penny Stack
Right. So just like all all of our care, we it's very client centered. And we always need to start there. And I say that because when we see a child that comes to us with dyslexia, we always assume, Oh, we need to teach them to read, here's the new phonics program. But meanwhile, the child's really dealing with anxiety, depression, potentially suicide ideation, self talk, I'm not good enough, I'm a failure, I can't they think I'm stupid, why bother trying. And if we just glaze over that, that's a huge mess. And so I think with school therapist, this puts you in a tricky wiki, because you have dates and milestones you have to hit when you work in, in school, and you may and often may not have time to address these needs. But if you don't address these needs, the likelihood of progress being long lasting, and the likelihood of that person being open to receive services, when they move on from your care are really slim. So I think what it looks like for the child is really doing more asking and listening than telling, finding out how it feels for the child to be asked to do something, finding out what's important to the child. Up until this point, he's been done, or she's been done on to the parent, the teacher, everyone else knows what's good. And this is what the child needs to do. But as anyone asked the child or explained to the child, what's about to happen, and how interested are they. And a lot of times, when it's just very human nature, when we are working on things that are hard for us, our willingness to work on them and are is really low and our frustration tolerance is really high. So doing them in small chunks, and relating it to things that they enjoy doing. So if their visual perceptual skills are poor, but they love Legos related to Legos, you know, again, that's keeping it client centered, it's meaningful to the child and acknowledging effort, which is different than giving a ribbon just for showing up. It's really acknowledging, I can see that you're working hard, and I can see you're frustrated, that what you're working on, it's not coming out to reflect how much effort you're putting in, but I see your effort. Just having those moments with the child and making the activities fun, I think are the most important things you can do for a child as far as supporting the team. There's a few things to think about. And I don't know if I'm going off your question, if I am just redirect.
Jayson Davies
You're totally fine. That's exactly what the next question was.
Penny Stack
So if you're supporting the team, you have to keep in mind that the parent or the kid caregiver are part of that team. And if this child is a biological child of that parent, the likelihood of the parent having dyslexia or learning difference is pretty high. So think about the deficits the child has, the parents probably have the same deficit, but are better at masking it. So think about how you're interacting with the parent and make those adjustments, it's usually really helpful pictures are great. And then I remember when I first went into practice, and it doesn't matter what setting you're in, you're all gung ho and you want to go show the world how smart you are, because you just pass boards, and you just graduated. And you give them this big, huge long program to do at home. And then you wonder why it doesn't get done? Well, you and speech therapy and the teacher, and their ballet instructor, and everybody gave them things to do at home. And now the list is too big. So when you're giving suggestions for things to be done at home, because the we should, you know, working with a therapist once a week for 30 minutes in a group is not going to make a significant impact we have to follow through. And I would either give a variety of things, let them choose and rotate throughout the day, and limited five minutes a day, 10 minutes a day, just make it achievable. And I think that will be really helpful in working with the team when especially with a parent, when working with the teacher, I can't imagine being a teacher in a classroom of 10 to 30 kids. And if one and five have dyslexia, and then other children with other learning needs having to implement every single accommodation for every single kid and remembering all that I think my heart goes out to teachers, I think that's a huge ask, but it's something we have to ask them to do. So I would frame it in the context of let me help you make your classroom experience easier for you make it all about the teacher, and not necessarily about the student. Because some of the some of the accommodations or strategies they can implement for this one child will impact 20% of their class. Or maybe if on activity for everybody, or your teaching or skills that he or she that the teacher can do. That will not take any more time. But can address everything. For example. Maybe the teacher you want the teacher to work on memory with with the child. And so the teacher in the morning goes over announcements. Five seconds later, what are we doing today, and then the children have to repeat it back? Or you're working on increasing memory in terms of length. And she gives two instructions maybe the next time she's given three instructions, maybe four instructions? And can the children hold on to it. And she's kind of keying into who and who cannot hold on to it. So really coming really working with the teacher to find out how does their day flow? What time do they have to do things and then hearing what they have going on? Can you come up with a plan that the teacher can implement that will not take much time out of her day or shift from what they're doing that will still positively impact her students?
Jayson Davies
Yeah, and I mean, some of those just sound like good educational strategies, I mean, that a teacher would want to use anyways, I like to talk about that quick win for teachers, a lot of us, you know, we struggled to get teachers on our sides at some of our school sites. And sometimes that quick when something like what you just mentioned, can can be that thing that just flips the switch from no one knowing you at the school to every single teacher wanting to you to come in and support them in their classroom, right?
Penny Stack
Yes. And the funny thing is, ironically, funny is that teachers can be an OTs best friend, because a lot of what they have in the classroom is what we have for treatment intervention activities. And they can really help us help the child.
Jayson Davies
Yeah, absolutely. And there's been more and more research, mostly surveys that have been done by OTD students, and a few by also educational doctorate students, but they're finding that that teachers want more support from OTs. They don't want to just to tell them things, they want us to come in and show them, you know, model how we can make some of these, these strategies work within their classroom. So definitely, you use the term a moment ago, and you actually used it talking about the adults and that term was masking. And I think we're all pretty familiar with what masking means. But it led me to think how some of our students might be masking for their teachers. Now, when it comes to dyslexia, we'll just kind of key in on the traditional idea of dyslexia difficulty with reading, how might students mask their difficulty with reading? Is that a fair question?
Penny Stack
Yes. And I want to start with something that's really missed a lot. You can work with an eighth grader for example, that is a fluent A beautiful reader and they can absolutely have dyslexia. And the way you know is they can't remember a thing that they've read. And people don't think about that. But because the student is a people pleaser, super friendly, everyone likes the student goes home spends four, four times the amount of time they need to on their homework, and as great grades, no one notices. So that's, that's one masking. Another one is fatigue, you'll, you'll see students get tired rub their eyes fall asleep, the class clown. My favorite probably because that was me talked a lot got in trouble. There's also the child who will be very disruptive. And this is something really important to think about. Maybe we have a child who throws a pencil, or kicks the kid next home, or whatever behavior is a negative behavior. And our first reaction as the adult is to stop that behavior and discipline. And I know this might be hard to do, but to take a moment and take a breath. And just think for a second, what were we just asking that child to do? Or what were they doing? If it's tying to something that's really hard for them? They made a conscious choice to act in that particular way. Because being reprimanded was a far better consequence than having to maybe read out loud. Yeah. And when you think about, I mean, that just breaks my heart saying it. But when you think about where is that student's self concept at that moment, for them to think that that's the better option? That's a whole different way of dealing with that child, then you're going to the principal's office, and we're sending you home with your mom. So those I think are the top ones.
Jayson Davies
It's unfortunate, but I mean, it is it's happening. And I know another another aspect of dyslexia that's close to your heart. And it sounds like it's actually what led you to dyslexia RX is understanding and supporting mental health within our students. And I think what you were just mentioning, right, like the fear of embarrassment, is causing students to potentially mask something else. And so I want to ask you about the ties between dyslexia and mental health. What are you seeing what trends are you noticing
Penny Stack
high prevalence rate in anxiety, and depression, you know, it's the chicken in the egg sometimes. And suicide ideation. If you take a look at some suicide notes, there's significant research, where they've looked at suicide notes and words have been spelled phonetically. And so the anticipation that this person had dyslexia is pretty high. That's what's noted in the research. I've seen children as young as first grade, tell me they hate school, which is terrifying. I've had children, I had an eighth grader once come in and ask me, Why am I here? This is just another place, it's not going to help me. They kind of just give up and feel like they have no control and what's what's the point? And I think, giving them that space, to acknowledge their feelings, working with them on good coping skills, appropriately sure activities. And that dialogue among the family is huge. And I'm glad you brought up the mental health side of it. Because typically, when we work with an individual with dyslexia, we work with one person, and we work with that person on reading. But then we have parents at home where one parent totally gets it, and the other parent does not. And I've seen this a lot, and it's either the parent, there's there's two sides I've seen to this. I've seen a parent who has been very successful, has dyslexia, and just wants their kid to buck up. If I did it, you can grind through it. Yeah. And I've seen I've seen horrible, I mean, just horrible things. And then I've seen the other parent who is very successful, very bright, never had a learning disability and just can't fathom what the problem is. They just need to work harder. So there's this inability to empathize, that these children are not our many means. And they are their own personality. And yes, we are raising them but so is their environment, and they're being bullied, which falls into the depression and anxiety. They may have younger siblings at home that are surpassing them. They may have parents saying, why can't you be more like so and so? There are homes where you have children who are gifted and talented. And you will have another child that has dyslexia. Like, I don't envy that parent, because both are challenged. And so yeah, I really think it just goes back to, and I keep coming back here is really looking into that lived experience asking them how they feel, how does it make them feel? You know, how does it make them feel when they're asked to read out loud? How does that make them feel when we ask them to do an activity that's hard for them? What do they want to be able to do? Why don't they like this, and some kids, some kids are scared to ask their teachers, you know, they get up in the classroom, and they go up to the desk master teacher, their teacher gives the answer by the time they go sit down, they forgot, again, they go back up, I just told you. So I really believe that we need to be intentional about what we say and how we say it. Because just the smallest thing can be the difference between a spark a spark or putting up a flame in the curiosity of a child and their willingness to be thirsty to learn. And if we can just cultivate that, above all, I tell this to parents all the time, let everybody else do the heavy lifting. No one else can be the parent. Just be that soft place for them to land. And I think if we did that we came together as a community around that child and we supported them, I think we'd see a big difference. And we might be able to end generational poverty. And we could put a big dent into generational illiteracy, and that seeping into adult social justice systems that we have to provide support for them.
Jayson Davies
Yeah, wow. Those are, you know, when when you think about something one specific, you know, diagnosis of dyslexia. It's hard to fathom all the other impacts that that can have beyond what most people consider to be the difficulty of reading. And I think we've all had that student that you kind of alluded to where they just don't want to come to school. And I have sat in plenty of IEP is where everyone wants to put in place three goals for this student. You know, the speech therapist wants three goals, the teacher wants three goals, the counselor wants three goals. And I've sat there and I've said, you know, like, the students having a hard time he's every day, he's saying, I don't want to come to school, are we really going to meet 12 goals, when the student doesn't even want to be here? Do we need to take a step back and just get the student to actually want to come to school and not cry when they get out of the out of the car?
Penny Stack
Jayson, you bring up a really good point, we've been very tunnel vision in our conversation today on dyslexia, because that's the topic at hand, and I understand. And you talk about coming to school. And when we think about dyslexia, we need to think about, they may have parents at home that are illiterate, they may have come from poverty or issues of not having access. And so what did it take for them to even show up to school? Did they have a good night's sleep? Do they have food? Do they have support at home, I mean, the list goes on and on. And so it goes back to that team and bringing community resources together to give them as much support as they can. And being realistic. I try when I when I do public speaking to tell the audience, if really all you do at the end of the school year is leave this kid in good spirits with openness to learn. You've done your job.
Jayson Davies
Yeah, that openness to learn is
Penny Stack
Yeah, I know, that's not a benchmark of an IEP, but my gosh, that's the best thing we can do for humanity, for sure.
Jayson Davies
Yeah, yeah, I agree that, especially in today's world, if you have that desire to learn, there is the World Wide Web out there. And we don't have to learn everything in school school is definitely a starting point, right? It's not the end of our learning. And I think you're right on with that openness to learn. If a child has an openness to learn, once they get that spark of what they want to learn about. Just watch out, just look out because they're gonna learn everything, whether it be on YouTube, Google Chat, GPT, something's gonna teach them it.
Penny Stack
So here's the interesting statistic for you. Most entrepreneurs have dyslexia. I've heard that one before. Yeah, there's the research out on that. Because when you look at somebody who is an entrepreneur on their resume, they will have a significant amount of startups sold startup sold, and somebody that does not have dyslexia will typically be somebody who worked for very few companies, but for longer periods of time each. So it's kind of an interesting, fun fact that ties into what you just said one.
Jayson Davies
Yeah, you know, we're all different. And we all find the things that tie into our strengths. And I love it. That's awesome. All righty Penny. Well, our where our conversation today has been such a pleasure learned so much about dyslexia. And we have ventured into a little bit more beyond the dyslexia RX and going into mental health, I really love it. And before we kind of conclude our episode, today, I want to kind of let you share what you're doing exactly at just like CR X. I know this is a very much a passion project, a passion startup for you. And I want to let you share kind of what you're doing with it, and how the OTs who are listening today might be able to get involved.
Penny Stack
Sure, thank you. I appreciate the opportunity. Jason said dyslexia RX is really taking this telescope and pulling it back and taking a look at the whole family to really support the core of the person who might have dyslexia. So we have dyslexia RX community in which people can join. And this can be therapists, teachers, parents, we do webinars weekly, and provide a community of support. We also provide resources where I may have a client come to me, they're not sure if they even have dyslexia, or where to go. And I'll just visit with them for a little bit, and try to create for them resources within their community that they can access. So no matter where they are in United States, they just really don't know where to start, I can help put that together for them. We do in depth screening on executive cognitive functions, and set up activities that children can do at home or, you know, adults, whoever can do at home. In the interim, between, oh, I'm not sure what to do. And here are community resources that I can directly access, but it just provides that gap and support. And so my vision for our for our clients at dyslexia RX, is to just address that mental health and that wellness and that family unit. So there's more peace and harmony in the home, children are excited to go to school, they start enjoying reading, and their journeys in school and their journeys with their teachers are more exciting and enjoyable.
Jayson Davies
Absolutely, that sounds wonderful. And it sounds like you have the skills to do just that. And now you're, you're creating that place to do it. So I really love it. Community is a great place to be not only to learn, but to be able to find that support that you may need. Whether you are a person you know, who has dyslexia, you know, someone in your personal space, who has dyslexia, or if you're a therapist, who is working with, with clients or with students who has dyslexia, so that is awesome. Well, Penny, thank you so much. It has been a true pleasure. I really appreciate diving into dyslexia and all the other places we went today, but definitely dyslexia and if you would like to learn more about dyslexia, RX and Penny, we will be sure to share the link to dyslexia RX to that community where you can learn more in the show notes. So Penny, thank you so much, and I really appreciate it.
Penny Stack
Thank you, Jayson. I appreciate being invited.
Jayson Davies
Alright, and that is going to wrap up episode 125 of the OT schoolhouse podcast. Thank you so much for tuning in. And remember, if you are a member of the OT schoolhouse collaborative, just hop on into OT school house collaborative community, click on the podcast PD space and take your quiz to earn your certificate of completion. If you're not yet a member, and you would like to learn more about it, head on over to OTSchoolHouse.com slash collab and I hope to see you in the community very soon. Take care everyone have a great week and I'll see you next time on the OT school health podcast.
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