What Schools Must Understand About Dyslexia — with Tim Odegard

Episode Notes

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Narrator 0:03
Welcome to literacy talks, the podcast for literacy leaders and champions everywhere, brought to you by Reading Horizons. Literacy talks is the place to discover new ideas, trends, insights and practical strategies for helping all learners reach reading proficiency. Our hosts are Stacy Hurst, a professor at Southern Utah University and Chief Academic Advisor for Reading Horizons. Donell Pons, a recognized expert and advocate in literacy, dyslexia and special education, and Lindsay Kemeny, an elementary classroom teacher, author and speaker. Now let’s talk literacy.

Stacy Hurst 0:46
Welcome back to literacy talks. We are so excited today about our conversation. We have the incredible privilege of being joined by Dr Tim Odegard, someone who is not only a leading voice in the field of dyslexia research, but someone Donell and I deeply admire and respect. And on that note, we need to excuse Lindsay today. She’s busy doing the thing teaching her first graders, so we are happy to have this conversation with Dr Odegard. He is the Katherine Davis Murphree Chair of excellence in dyslexic studies and a professor of psychology at Middle Tennessee State University. And I think if you are a regular listener to this podcast, you have heard us refer to Dr Odegard multiple times, but just a few weeks ago, we did an entire episode on an article that he wrote in the perspectives 75th I never say this correctly, the 75th anniversary edition of the perspectives magazine, and we kind of teased this episode because we knew he was coming on. So a lot of you are probably here to hear about that he has had his work has had a profound impact on the way that we understand dyslexia not just as a reading difficulty, but as something that affects every part of a student’s academic journey and emotional well being. So thank you for joining us today. Dr erdegaard, we’re really honored to have you here.

Speaker 1 2:16
Well, it’s nice to be here. Stacy and Donell, thank you for having me and a chance to talk about this topic.

Stacy Hurst 2:22
Yeah, so to get started, I think it’s important context, if you wouldn’t mind sharing a bit about your personal and professional journey, how you got here.

Speaker 1 2:33
Oh, the story, the story, which I now have told ad nauseam at this point. So the question is always, how far back do we rewind it? People normally like to know when I first realized that, like, reading was really hard for me, and it was with those leveled readers, when I was in the reading groups and small reading groups. I have a very good memory, and it’s kind of like a still trap. I am a little bit older than I used to be, and interference is building, which is one of the main mechanisms of forgetting. So it’s not quite what it used to be, but it’s still pretty exceptional. And I would memorize all of the words, and in those level readers, there’s a lot of repetition of very similar words there, typically isn’t a rhyme or reason as to why which words are there, and what kind of word structure, concepts they’re reinforcing, they’re just there, and I would memorize those words. So when I was fourth or fifth person in the group to read, sounded like I was an awesome reader. And the weird thing was, was that I could remember pretty vividly. There these little chairs, and we were lined up with our readers in our laps, and we were linearly sat there in a line, 12345, and maybe six. I can’t remember how many of us there were. And as you were better, you would move up until I was first reader. So I was in the first chair, that I was in the second chair, that I was in the third year that was in the fourth year, the fifth year. And the reality was that I had memorized and been so compensated at such an early age and looking as if I could independently read the words, what they were seeing was I was able to memorize the words and what they look like on the page very rapidly, and I was prodigious in that ability. So I was found out I was kind of demoted. Eventually, I wound up in Texas in elementary school, and they picked up quite quickly that I was really struggling with reading. It was the year that the first dyslexia law in the United States was passed did not become implemented. Tyne C Miller was instrumental in getting that passed. He was on the State Board of Education. So that was in 1985 that it was passed. I got, supposedly fact checked by a buddy of mine, Elsa. And I didn’t want to be cantankerous right there in front of everybody in the audience, but the bat it. Did pass in 1995 very clear. I’m a researcher and a historian, and have published multiple things on the history of legislation and policy in this nation around dyslexia. I get my facts right. It wasn’t implemented and the letters were not sent to schools until 1996 that’s when times he had the letter sent to school. So in essence, why fact check when we’re both actually correct. It was passed in 1995 the schools went out to start implementing 86 so I was sitting in there in one of those Texas schools in 1985 struggling to read. Later. Would be one of those struggling readers in 1986 you know, and I’ve I’m actually pretty direct and upfront, because of that lived experience, a law is not the finish line, and laws can hurt or hinder or do nothing, and they definitely didn’t help me out in my cause, but I was put through testing I knew I couldn’t read and spell. They, however, used other cognitive indicators, and because of my background, didn’t think that I qualified to be labeled with a specific learning disability and dyslexia, so I was denied services protections under federal law at the time, and eventually the state law the first state law for dyslexia in the country. And I kind of floundered and went through and then my family moved back. My mom and dad are from rural Arkansas in the north part of the country. We’re from that part of the world. And we went back to there. And as I was there, I came in and there was two pieces, and this is actually a fun part of the story. One piece was that I clearly was struggling in ELA. I was doing okay, and I was pulling off like B minuses, but it was still like all that past history was right there in the report. But here’s the thing I had, on my own merit, through my ability to do math, been in the highest level of math in the Texas school system, at least there in North Texas or North Houston. And the reality was, was that I was actually a year ahead of every single child in the Arkansas public school system, at least in that school and for the majority of the schools, except for one, and that person had moved in two. He was an Army brat, and he had been moved in. I was a Walmart brat. I had been moved in, or moved back to where my family was from originally, and I had to kind of be exceptional in a different way than I was used to. So I was used to being exceptional and hiding because I struggled so to read so much. I felt like I was exceptional because I didn’t receive any services, any help. I was denied those. And now I was exceptional a different way. But for the topic we’re going to talk to, you don’t like to stand out, and I didn’t want to be seen as different or other than so I went in and I repeated the same content again, which was no fun for me. I already knew it, and I found it very disengaging and boring. I’d eventually go on, and I would get all the way through and always be in the highest science and math courses in the high school that I went to in Arkansas and graduated from. I would also eventually be in the AP English classes my junior and senior year. The interesting thing was the syntactic pieces, the grammatical pieces, the writing pieces, were always my weakest, as one might imagine, but the understanding, the interpretation, and my ability to grit and bear it and overcome and over function, which I think is an important concept to us, to think about here, is that I was actually over functioning, which created additional stressors for myself that were masked by success, but were actually very detrimental to my overall well being and where I wound up. So I continued. I was over, functioning out of spite and feeling like I had been left behind by education. You can see that I left behind my educational records at my detriment because I didn’t want to be other. If I had kept and I had been moved into the math class they had, I would have had to go into calculus at the community college, because I would have been on this track to be in calculus. I have taught myself linear algebra. I’ve taught myself other parts of what differential equation. But I myself have actually never even in college, taken a calculus class, which is interesting given the advanced statistical modeling that I do and what I’ve done with Mr. Physics. But I have had multiple physics classes in my life, so I progressed, and then I went to one of the best liberal arts colleges in the south and I did well. There, I got a leadership scholarship, of all things. I had a music scholarship, and I had a leadership scholarship. I did not get an academic scholarship, just because it’s such a prestigious school that the competition for those were really, really rigorous. I was offered full rides for my academics to multiple places, and I was recruited heavily, especially by the Air Force, to go straight into officer training school. They really, really wanted me in the Air Force. I’m a legacy Air Force person through my family and my heritage, and they wanted me to go to straight to officer training and come straight in at that three so, you know, going from the most. Struggling reader, not identified, thought to not have the cognitive aptitude and potential to be labeled in a model of identifying an SLD, to being highly recruited by multiple universities across multiple states, getting full ride offers, going to one of the best liberal arts colleges in the south and having multiple scholarships and being recruited heavily by the Air Force to go straight into officer candidate training, straight out of high school was kind of my reality of what they were. Undergraduate was hard for me, but I made it, and eventually I got to graduate school, which was again hard for me, but differently hard. It was hard because of the reading and the amount of reading I had to do, just like undergrad was hard for the reading and the amount of reading I had to do if I was at I was up until 11 or 12 in high school to pull off all the reading I did for AP English in my different classes, I was up until one or two every single night, again, that over functioning to compensate for these real challenges you have means you over function. That was a real detriment to my health and well being, and it’s only been in the last five years I’ve realized that I’ve had chronic health issues since I was in grad school, especially in my back and my cervical spine, and issues with inflammation that I was unaware of. Because when you’re healthy and vital, you can kind of just persevere. I’m a high energy person, and so I could persevere through those, but through over functioning, I was able to really overcome that dyslexia. But at what cost is really the question that I have been asking myself, and how do we adapt society and allow ourselves to fit into society in different ways? And I’m going to preface this by saying I don’t think that society is going to change anytime soon. So in that light, really, how do we curate an environment through what we can control to be what we need to thrive and survive?

Stacy Hurst 11:54
I love that, and it really is the environment we think about that it sets the stage for something to grow organically, right So, and it is something we can control. To your point, we can’t control all of society. We attended your session at plane talk, as did many other people, and I can honestly say I’ve probably have more conversations about that session, after the conference, than probably any other session, and you addressed the connection between reading challenges and mental health. And I think there was so much in that session that resonated with the P with anybody who heard it. It was about how reading happens in the brain, but then also the impact that it has, and maybe in ways we don’t see that we’re not assessing. Donnell, I know we’ve talked a lot about it. What are some of the things from that session that that impacted you the most or stood out to you?

Donell Pons 12:55
Yeah, so you know, Tim, one of the things stood out to me is your your ability to be vulnerable, because that’s that’s what you’re doing when you’re sharing this type of thing and really getting real with people to understand what it what it means, and what it feels like is there’s a real sense of vulnerability. And I really appreciated that, and also realized what you were doing in order to to give that to all of us who are listening, if we’re willing to open our hearts and minds. But you also said some interesting things about realizing the characteristics of and the things that can happen to individuals who have dyslexia within a school system setting that lead to feeling things such as depression and anxiety, things that I have personally witnessed and experienced with family members my husband and several children who have dyslexia, but it’s so interesting to me because the backgrounds of folks who have dyslexia, they’re not all the same. You know, that’s as many they are as diverse as any other group or population. And so it’s trying to figure out how what are those things that would be most helpful or useful to individuals who have dyslexia, because you alluded to it in your own personal story, but you also had some really great strengths that were unique to Tim?

Speaker 1 14:02
Well, true. So I think there’s, there’s multiple levels to what you said. So each of us are unique to our own lived reality. We come with our own set of risk and resiliency factors, if you will. To borrow from the Hugh Katz and Yakov pesher risk resiliency model of dyslexia. It’s a really nice one to think about. A risk factor for me was I came from a low economic status. It had been generational poverty, and it was a cycle that had not been broken. That means that you get intergenerational aspects of adverse childhood experiences, which, through Yak, often, he’s researched with one of their graduate students, they were looking to actually show that that actually has some predictive value about finding risk of future reading problems that intergenerational link here. So it really is important to think that some of us will come in with specific risk factors. I had some protective factors. I’m really good. At making inferences. I’m really good at using my memory. I’m really good at building up a dense network of information. I like to dig deep, and I am all in if I’m going to show up for somebody or something. And there’s no exceptions to that. And part of that’s why I can be vulnerable too, is it allows me to show up. There is a Kate. There’s a great cost to that. However, when you show up from a person with for a person so full throated, so vulnerably, it means that you’re opening yourself up to what might come. If you open yourself up to an audience so full throated and so vulnerably, it might come. But the counterpoint to me is having lived the experiences that come from the micro cuts of a school that doesn’t fit your needs is just too overwhelming to not show up. Also, life is worth living, and so we I get this one trip around the sun in my spiritual backgrounds and way I think about this, and I don’t want to waste it. And if there’s a chance to connect, I want to I want to ask questions. I want to dig deep, and I want to know things. And so it makes me a pretty darn intense person. And somebody just spit some coffee up because they know me really well, and they were taking a drink of coffee on a morning walk or something. And it’s kind of just pretty much to sum myself up, I was at that plane talking. Before I went to give that conversation, I was talking to one of our colleagues, Sharon Vaughn, and I said, Well, Sharon, I’m going to step away now, grad to catch up with you. I need to go prepare, because it’s going to be hard for me to do this. She’s like, what it’s like, talking about your research, some other people’s research around mental health and literacy. I said, you know, we’re really forming the picture. It’s like, we got the causal model starting to form. Like, really? I said, Yeah, you’re manipulating stuff. Like, when you start manipulating stuff, you’re trying to get into causation. We’re not just predicting things anymore. We’re actually manipulating things and seeing that. We’re not just improving literacy, we’re improving mental health. That starts to show causation and see so why is it gonna be hard? Said, well, because I have dyslexia, and it’s like, it’s really personal for me. She goes, oh God. Like, what you mean? You could have been more. And I we can’t, we can’t, we can’t deal with you now to we’ve got so much energy, you’re all over the place. You could have been more. So I think for the rest of us, it’s probably a good thing that you have dyslexia.

Donell Pons 17:22
So good. I love that response, you know. And Tim, I’m going to tell you this because my husband has dyslexia. We’ve talked about it many times. We met. We were acquainted with you. Let’s put it that way. I don’t think we really met formally at was at an IDA conference. It was a long time ago. This is pre covid land. This is a while ago, and you were very new. I hadn’t heard of you yet. You’re new to the field. You did a presentation. Was it a small side room, and my husband was there, Stacy was there. We had some other colleagues there, and he would text and tell us where we ought to be. This is he’s great for that. He kind of jumps rooms and tells us where we ought to be. And he texts me back, and he says, I don’t know who this guy is. I’ve never heard him before, but you have got to get down here. He’s laying it down, and it was you, oh, it’s really interesting. Yes, he realized you were very different.

Speaker 1 18:08
Oh, well, I am very different, and just figure that out. But within like, five seconds, it’s like, Can you name this? This? This song in five seconds? No, but it’s a very different song.

Stacy Hurst 18:21
I song. Yeah, I love it. I we mentioned this in another episode too, but there’s not one conversation I have with you or hear you speak that I’m not inspired by something, and I always, in fact, I just had to go get my notebook because I’m like, Oh, he’s spewing stuff again that I need to take note of and take a deeper dive into later so your your knowledge runs deep, but you are so gracious to share it with everybody too. Increases ours as well.

Speaker 1 18:52
Well. I think it’s important. I think the investment we make in science as a society, in whichever way that investment is and time and our treasure of where we invest, our taxpayer dollars, is something that we should cherish. And I’ve always thought it was important to highlight that is through the collective that we find understanding. It’s not through any one person’s line of research. Yes, some one people have done tremendous work in a very specific way, and added, I think, more weight to a field, but in totality, that’s where the weight is. And you are evaluated for what we’ve developed from knowledge by looking at the landscape,

Stacy Hurst 19:33
I love that, and you’re making me think of maybe there’s no such thing as original thought, but there are great collective discoveries, right, that we can make in science. There

Speaker 1 19:46
are, and it’s also, I think, I don’t think linearly. In fact, a colleague of mine was saying, I’ve looked at your slides, they’re not linear. I can’t remember. It’s like I kind of was putting these things that I cured. I curated a set. For something we’re going to do around the revision and the definition of dyslexia for a big conference coming up. And I can’t remember if it was intentional or if I was just like holding like placeholders, but I like to spiral. So I like to go around and then go deeper, and then click back around, and then go deeper, and then click back around and go deeper. And part of my training is in the spiritual realm, in the religious realms. And so dialogic conversations and the growth that people experience when you try to understand yourself and your relation to something larger than you, often isn’t a linear walk in one direction. It often is a spiral. You come back to the same context. So going back to something that you’ve read before, with new knowledge that you put into it means it is going to be situated in a different situational model, and you’ll activate new things. And so going back to a similar topic told from a different perspective, will make you think about something differently. I’m currently reading The Myth of normal by Gabor Mate. I think that’s it. And I’m now thinking about the books that I’ve read from Jon Kabat Zinn and Full Catastrophe Living, I think was one of his first big books that he did. And it’s reminding me and making me re contextualize the work of Jon Kabat Zinn and the spins of the mind body connection. And specifically, Gabor Mate is focusing on some issues that I currently deal with, which is like autoimmune and some other issues. And my family and our intergenerational aspects of what we are kind of riddled with cancer as well.

Donell Pons 21:31
Tim, you brought up something really interesting, and I think this is a good place to maybe explore it a bit redefining or looking at the definition of dyslexia, because I find this very interesting. I think it’s high time, and it’s great to be having this conversation. But oftentimes people will say to me, why do we need another definition? Why are we even examining the definition?

Speaker 1 21:52
Oh, well, it’s been over 20 years since we had the IDA come up with the consensus definition, and at that time, in 2002 we’d only had a handful of brain imaging studies, and we were making some really big claims based off of animal model research, which was really well done and elegant from Glenn Rosen and Gordon Sherman and Al galaburda and geshwin. Those were really seminal studies that have been done. We were still making big claims based off of case study research that had been done that really motivated the entire idea in the United States of a specific learning disability. We also were starting to think broader. We had really started with dyslexia, which then became the archetype for all other LDS that followed. I don’t think people really understand that. People think that we made up dyslexia, but SLD is somehow real, like you don’t understand the basis of SLD. And the work of Sam Kirk and others cites the definitive research that had been done early through case studies, starting with adults who lost the ability to read through some kind of a selective brain trauma, into the first child, pediatric case study that was published in the journal The Lancet, a British Medical Journal, back in the late 1800s so before the 1900s even emerged, and then we just kind of linked into these models, a real critical piece that really has shifted, and how we think about most conditions now is you don’t have it or not have it. It really is on a continuum. So not diabetes, heart disease and the severity of heart disease, not sickle cell anemia with one gene and genetic factor, but something like cancer with multiple risk indicators that come together and various forms of them. So we know that there’s this now, this environment, brain, genetic interaction, we now know that generational impacts of behavior and what we experience in world can trigger and set up certain genetic expressions, which when can be passed down. You know, when I was coming out and doing my postdoc work, and I was working out of Princeton for a summer institute, and was being exposed for the first time to neuro imaging research. Was being exposed to the first time for epigenetics research being trained by the person who did the first pediatric fMRI study and others that she surrounded herself with. I was really struck by how demonstratively different this was, paradigmically we had been in this constitutional it’s something you’re born with mindset. We hadn’t really and still aren’t thinking about it for what it is. It’s something that you could be susceptible for, you could be predisposed to, but it’s not something that you’re inherently born with at birth. And there’s a lot of things that can increase the chances that you will present with these really challenging issues with reading and spelling that are hard to remediate or have less severity in them, and that’s a really important thing for us to keep in mind. And my child having had formal, high intensity, structured literacy intervention, a multi component intervention with in. Empirical validation to it. I’ve done some of the original brain imaging studies on it. Is it a much different place, having had the enriched oral language development, especially around the naming and the phonological pieces that he got from birth up until kindergarten, and then the support that came in at the end of first grade, going into the second grade for multiple years to support his word reading and spelling development into the morphological pieces of the English language was totally different than me. He had early protective factors around a rich oral language development, yes, background knowledge, yes, words, yes, syntactic structure, but also the phonological pieces that build that, the naming speed that builds that then into making sure that he had a knowledgeable person that was able to understand the systems of support, where they were failing and where to step in and fight, versus where to pull back and get resources that We had access to outside and that’s a different setup, and that’s a different way of thinking about dyslexia completely. It wasn’t as if he was born this way. He because he had a first degree relative, was already at conception at a higher risk than anybody who didn’t have a first degree relative. That’s one of the biggest risk indicators for dyslexia. And that’s not how we think about it. We think it’s somewhere you’re born, and that your brain is wired this way, and it’s like this for life.

Donell Pons 26:26
So Tim, you’re gonna blow a lot of minds with this. People are probably sitting there with this new explanation that you’ve given and going, Whoa. That kind of makes things a bit different for me. How does this help? Does it schools and their role that they play.

Unknown Speaker 26:42
Well, Oh, Hi, Lindsay. Yes, yes,

Stacy Hurst 26:47
we need to Hello. For those of you who are listening and not viewing, Lindsay popped in. She’s done with her teaching day. So you joined at a really you did

Narrator 26:59
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Speaker 1 27:53
okay, so, so how does it okay? So it means that, if we think about it from a risk resiliency standpoint, if we think about it about risk and protective factors, then the school environment that I had was a real risk and a liability for me, having an identification model that didn’t meet my needs because it didn’t honor and acknowledge what my potential was, and it kind of got hung up on this, this Need for this old school, which we still can use way of thinking about potential, and not acknowledging what I brought as assets, and then not giving me services, and then creating this requirement for me to over function, which set up this chronic and variable stress In my life, which are pathways to inflammation, are pathways to cytokines being released at a cellular level. They’re pathways to nasty things. And I’m not going to list the Lindy litany of things that I have going on in my life, that I manage chronically in real health ways, but they’re real, and they’re just part of my fabric that are even woven with me. So I always bristle when I hear dyslexia being a gift, when I know causal mechanisms in place for the requirement for me to overcome it meant to over function because of my position and the resources, the protective factors that I didn’t have, the fact that I had a few that I overcompensated and over leveraged. But my son, with his his protective factors, he has so much more, and he thanks me, you know, at least twice a year for just being there as a role model and giving him a road map. And so if you think about the social support of a mentor to look to and to have it be your dad, that’s really powerful. So one protective factor is that he’s so mentally healthy. It shocks me that he came from me. In that sense, his ability to not always get triggered and have anxiety over stuff is remarkable, so resilient. And I like that. And you would look at me and you. Say, Well, sure, you were resilient too, but again, over functioning, I suppressed and didn’t let the world see all of the big emotions that I was having to squash and hold down. And he can regulate much better than me. He still has all those big emotions, and it gets overwhelming for him at times, but in a much different place than what I was. So this model really can account for a holistic understanding of the child, but the schools have to acknowledge they’re a risk factor or a protective factor. They’re a risk factor for literacy development, they’re a risk factor for mental health and how they respond to a child, which is well documented at this point. We now know that we have a what we call them, developmental psychology, developmental precedence. It isn’t that you struggle with mental health and it’s more likely that you will struggle with literacy. It’s that you struggle with literacy, making it more likely you will struggle with mental health on average. We also know that, yes, those early from birth to life for adverse experiences will add up when they get extreme and lead to differences academically and in literacy issues. But it takes, it takes much higher levels of those risk factors to get there. But the chronic stress, the chronic variable stress of not knowing when you’ll be laughed at, not knowing when you’ll have to read aloud, not knowing when you’re going to be having to spell on the board, not knowing the stress of trying to write something and having to pick the word that you can spell, not the word that you know, knowing that you’ll be dinged and thought less than every time you do that. And here you’re talking to me, and this is my time and for dyslexia right now. So there’s other things like this, and we could talk about other groups, but it’s important to hold space for those of us who have this. This isn’t the only thing that causes this. This isn’t the only mis alignment with society. But right now, you invited me on, and you asked me about dyslexia and why we should redefine it. Well, we should redefine it because the secondary consequence of it is mental health issues for the host of reasons I’ve just said, and if we were to actually expand that and do more research, I bet you would also find a higher incidence of chronic conditions like I suffer from.

Stacy Hurst 32:11
Sure, yeah. And I think that is part of what was so impactful. One of the things that was so impactful about your presentation was the research that you shared and you mentioned it, but I don’t think we can put too fine a point on it. The difference between the impact of not being able to read has on those other factors that we’ve been talking about, anxiety add there was a list or the inverse, right? So as a school in a system, back to donnells question as well, if we address the ability to read, if we can intervene on that level initially, would that be, I don’t know. I guess I’m coming. I have a lot of thoughts in my head right now, but as you were talking as well, I was thinking, Are schools equipped to support resiliency for mental and emotional and social situations.

Speaker 1 33:07
So I’m gonna go back because, yeah, I’m gonna go back because there’s actually something that you know that your audience doesn’t, and that’s the rest of the studies that I highlighted and why I was having that little sidebar conversation with Sharon Vaughn before I went in and gave that blind talk, which is Sharon Amy grills, Jack Fletchers and others, and Callum’s team, out of the Woodlawn longitudinal study, out of Johns Hopkins, they’ve been looking and showing that if we intervene early, first and second grade, before the anxiety really kicks in. And actually, anxiety is really key here, then we can reduce the mental health symptomatology of internalizing conditions like anxiety and depression. But in particular, we see good results with depression. There’s been less research on the externalizing, which would be something like an odd an oppositional defiance kind of a condition. The anxiety is key, and even in second grade, when Amy grills was working with Jack and Sharon to publish this study, they were already showing what we call in research and mediation effect, where if you started off with elevated levels of anxiety, as I said, developmentally, we know from MacArthur’s research and colleagues that we see that that can escalate the internalizing conditions of the depression and anxiety. So it’s academics which is actually one of the biggest triggers, one of the stressors, the chronic variable stressor. And so it’s it pull pushes you away to go back to Kurt Lewin’s push and pull factors out of the birth of social psychology. It pushes you away from what you should be doing, engaging in that academic support and the protective factor of the school is really critical. If he can do a good job of intervening early, we can disrupt the development that can happen when you struggle in this way, of these mental health challenges, which the anxiety in particular will push you away and make it less likely to respond as robustly to future. Intervention. It was already seen in the study they did in second grade, and they saw similarities around that in fourth grade, where they tried to use behavioral interventions to intervene with anxiety, and saw very limited results from that NIH funded project. Actually, I kind of got into a fisticuff with somebody and decided to kind of call it off a few weeks ago, because I know this research very well, and we are not seeing the same outcomes and support later on. And it seems to be that anxiety in particular, is one of the pieces here, which makes sense, if one of the largest Nexus, one of the environmental determinants of these challenges, is your academic fit and your ability to perform academically in this situation, that will then result in a day of you going from eight to 230 or three in the morning with chronic variable stress, which is just a recipe for disaster,

Stacy Hurst 35:49
which certainly makes early identification critical

Speaker 1 35:53
correct. So I had a student do a systematic review of the behavioral intervention side of MTSS so the multi tiered systems of support, it shows mixed results on impacting academics when we intervene that way. So it’ll be interesting as we continue to have hopefully considerable investment from private foundations. Now, there was a recent research study of individuals with dyslexia ask, and that was asking, What do you think should be the research priorities and the social, emotional side of it was one of the big ones research into actually helping teachers understand and do their jobs helpfully, which makes a lot of sense given that most of us were lost in the system. And then also the intervention work. You notice where we want the stuff, the genetic piece was way down at the bottom, like, yeah, we know it’s our first degree relatives. We know this runs in family. What more do you need to know? Guys? It’s, it’s, it’s poly genetic, like it’s not going to be explained. Language is poly genetic. Something that’s born out of language will be poly genetic. Good. Do more basic research, but what the community says is, help us adapt, and help us have supports for families to figure out how to adapt. And it was really interesting to look at those results as they were shared with me last week by by some, by some colleagues.

Stacy Hurst 37:06
Yeah, it is interesting. And this came up in the episode where we talked about the article you wrote for perspectives on MTSS. And I was lucky enough to work at a school that was very invested in that model, and we had a whole set of behavior supports and all different tiers and academic supports. But it didn’t seem like those two were integrated. We were either addressing behavior, or, I should say, managing behavior, trying to or trying to intervene academically, but your research on what you’re sharing with us right now helps us to really recognize we need to integrate those in for that student this is they’re not happening in isolation.

Speaker 1 37:55
Yeah, that’s right. Also, we think about these intensifiers differently and the interventions. So if I like to use wonzac, alitaba and McMaster, I believe, and I apologize if I got the third author on their book, they have an intensive intervention book which is stellar. It’s wonderful. It’s a great primer on kind of how to think about this. They divide them up into organizational more time, smaller group, a different setting. Those are organizational. If you look, and I’ve had students review all the RTI manuals across the nation, most of the state policies around this and that are turning into these procedural rules are organizationally driven. But we know really the secret sauce is, is the instructional intensifiers, so the interesting thing is, there was a series of study done out of Arizona State University looking at word study pieces in early grades. It might have been Kate, it might have been one and two. I know that the foundational program that was being used as the word study piece was foundations. And what they were seeing was, was that there were kids that came in with a profile of oppositional defiance disorder. There were kids who were coming in with pa deficits. What they saw was dB, the small group organization allowing for better behavior management resulted in tremendous and rapid learning and exiting out of the out of tier two, back into just only tier one for the kids with odd, but the kids with the most pronounced and severe forms of phonological phonemic awareness deficit actually had much slower, protracted which would make good sense, given that there’s a strong predictive and developmental precedence for early pa predicting future reading ability. So it wasn’t as if there was an intrinsic risk factor for the kids with odd in their linguistic processing, their language processing. It was really that they were disrupting now there, and this is important to go back to the research showing the link between mental health, or like these types of behavioral things, and future literacy. There’s exceptions on mental health or these. Behavioral things predicting future literacy five year olds who had disrupted behavior in the classroom, or attention problems that actually did predict less reading ability at seven. Now, the anxiety, the depression that wasn’t it probably wasn’t even there yet. So it’s important to remember that disrupting your learning environment is actually really critical. But we often think of it as either I’m going to intervene, and actually what I’m doing is either an intervention for the academic side, like our organizational things over here, or smaller group and these other things. We don’t realize that having a teacher that can manage and have behavioral modification systems to just motivate and engage, as I was trained to do through my insect training course out of the hospital, that was a big piece of what we were trained to do. And I remember when I was running an RCT with people who were trained differently and more in a one on one kind of a setting. They didn’t have the small group materials, and they didn’t have the small group training, and they weren’t realizing that they needed to have a behavior management process layered over that to manage all of the things that come along with it. I think, as Steve dyktra says, What is it dyslexia? And it’s entourage, so all the things that kind of come along with dyslexia,

Stacy Hurst 41:07
yeah. Lindsay, as you’re listening, are you having, are you thinking about your son, and maybe in what he’s experienced?

Lindsay Kemeny 41:15
Yeah, definitely. I wish you know, I remember in kindergarten, he would come home, and we would say, Oh, what was your favorite part of school? And he would say, going home. And at the time, we like laughed, and we thought that was kind of funny, because we didn’t really understand. But that was a clue. That was the first clue. I mean, I mean, we knew he was struggling to learn his letter, names and sounds. You know, his speech development was late, all these things. I’d had no idea what dyslexia was at the time, and it just makes me so sad to think back to in kindergarten is, you know, he started to, he wanted to go home because it was hard for him, and he understood, you know, he was understanding that. And it took until he was in second grade when we finally did testing, found out he has dyslexia, and I think his and he was depressed. He was diagnosed with depression as well. And as we’re talking, yeah, it was all centered around his struggles learning to read. And I think it kind of peaked in third grade, because he really started to compare himself with others at that time. And so I really, I just saw firsthand Tim like, what you’re talking about with this mental health health connection, like I just saw firsthand how tightly connected self esteem and the ability to read are, and we did all these things to help his depression. And when things got so terrible that, you know, we took him to therapy, we got professional help. But out of everything we did, I think what helped him the most was the ability to read. Because as his reading improved, his self esteem improved,

Speaker 1 42:52
and that’s what the research of Amy grills. That’s what the Kellum study showed. That’s what Marianne Wolf’s research with Rabo and the Italian version of it. I will not, I will butcher the Italian for a Foster’s name on this. So yeah, I’m curious, because it’s going to be challenging for us to think about how we communicate this new approach to thinking about dyslexia, but the advantages that it’ll bring will be tremendous. If we were to intervene early in kindergarten, if we were to know and not say, oh, dyslexia per se, but to know what to do, to go in and wrap around your son, Lindsay and support and monitor so that maybe even, like my son, by the time that we get to the end of first grade, we’re already queued up, and we’ll have the time up until a study that I published recently in the journal learning disability, looking at prediction and treatment response to these really sustained programs. Typically, if you were a younger child that was brought in, you did better. But what my study did was we actually went through and actually use MTSS as instructional discrepancy to find the kids who would come in and get a sustained, multi component, structured literacy program. And it was actually the opposite of that. Now that we’ve used we have a robust MTSS working in a large school district in Texas, and we were able to build that over 10 years to get it to full sustained implementation and innovation. It was actually our youngest kids, because Lindsay, your your son, likely was receiving support, likely was doing that, and the extent to which we can get supports in and help them understand they are being supported and see outcome from that work, and showing that it would likely be a buffer for their mental health. And it would likely have two things. It would re if we could run that Well, it’d reduce the overall number of kids who are collateral damage that wind up in second or third grade more likely third or fourth that are finally going to have to get this high left dose triage, which we could have dealt with before and not gotten to that point to where your son by the time he might have needed 234, years of sustained intervention work, let alone. Continuing accommodations. If he’s a very severe, protracted form with the automaticity pieces and the spelling often not coming online, then you would have the resources for those in public schools. So it really is to now to your question, kind of, what’s the role of the schools? I think it is to them to step up honor, what’s the potential is. And then I think creatively, in leadership roles, think about how you do what’s best and what’s right with the resources you have, and try to get parents and others to come alongside of you, to help to move this away from a lack of trust and a issue with compliance. I’ve been doing some thinking around this, and I’ve got a phrase that kind of came to me recently that I have it’s on a card back here. It’s a little bit different for me. I’ll pull it real quick. But it when I was doing this, it dawned on me the word Trust has a very deep Hebrew meaning, which is the faithful listening to one’s soul, your foundation, but there’s this, and so I didn’t quite like what I initially was thinking, which is, we can move at the speed of trust is basically what it is. But that comes out of Stephen Covey’s work, and he’s kind of monopolized it. And it really isn’t about outcomes. It really is you have to, as a person, listen to your soul and what your soul tells you is right, and we won’t have parents and policy makers and instructional leaders and people who make these decisions and foundations and society as a whole come together if we can’t learn to actually trust one another. Because in my assessment of the legislation that’s happened for starting off in 85 again, with the first dyslexia law up to the most recent science of reading legislation. It’s a mandate, because trust has been broken, and we can see that trust has been broken. And how do we build trust to move forward? And it’ll have to go with the speed of that trust.

Donell Pons 47:03
Okay, I love you. Brought me back to my answer. Then I put the question to do to you, and you’ve brought us a very full bodied answer. And Tim, I’m also thinking that definition is critical too, because instead of thinking of things as inevitable, we think of them as things that we can act upon. And I think for a long time in schools, it’s felt inevitable. It’ll be inevitably this child will struggle, inevitably this will be difficult. But instead, if we think rather, there’s growth opportunity, there’s opportunity to make change for this student, there’s opportunity within the school,

Speaker 1 47:35
yeah, okay, but we can’t throw out the reality of my my lived experience, my son’s lived experience, Lindsay son’s experience. Dyslexia is real. Yeah. So the reason we will not have trust if you deny lived reality of the protracted, long term effects of this, even with the best intervention of remediation and support for a small sample of the population. So where we get off is and I saw Twitter explode when I was at the Big Sky Conference last year, and Jack Fletcher said that we could prevent dyslexia. And boy, why did the pesky dyslexia mom just go off the rails on that one. And of course, because it’s triggering when your reality, yeah, it feels like someone’s denying your lived reality. And it’s it’s one thing to ask people to open up and broaden but it’s another thing for people to think that in their specific situation, this could have been preventable, and my son still struggles with these things, and even with everything that I’ve over functioned to overcome my son as I’ve shared other places when he was just one and two, when I would read little story books to him, children’s books, he would put his hand over my mouth and say, No, No, mommy, does it better when your one and two year old’s ear for language could already determine that there’s a distinction from your prosthetic reading, your ability to read with emotion and everything, versus your your partners. That’s that’s pretty telling.

Stacy Hurst 49:15
Yeah, and I do, I do think it’s hopeful that we can mitigate some of that, right? Even today, I think what we’re talking about is long term changes in the environment, as you say, Tim,

Donell Pons 49:29
and acknowledgement. So that’s a key piece, too, Tim, because you it’s acknowledgement. So I guess by saying the inevitability, let’s do something, instead of acting like we can’t do something there for a long time, and then also acknowledging, like you say, the challenge of this, and understanding that I’m not trying to minimize, but acknowledging the challenge of this. Because my husband was at Big Sky, trust me, I had to calm him down because, yes, just like so we’re discussing this as well, saying no, no, it’s okay. It’s okay. Yeah. Uh, because you’re right about that’s very real and and you have to acknowledge that. But here’s what I don’t want to see, Tim is the individuals that I meet, because I work with adults in the workplace who have typically have dyslexia, struggled with reading their whole lives. And there has never been, there’s never been an answer, there’s never been there’s never been anything for them. And the older you get, there’s less That’s right, fewer resources and fewer people willing to understand. In fact, there’s no understanding the older you get. And having a 60 plus year old student who for the first time, as I’m working with them through zoom, because that’s the only meeting we had, and he is getting it for the first time, putting sound to symbol and reading a three sound word, a three letter word. And the emotion that overwhelms both of us when that student stops and says, and puts his hand up and says, ma’am, I’m going to need a minute. Ma’am, I need a minute. And then I take, I said, you get a minute. You get a minute. He goes, You don’t understand. I’m realizing I could have learned and I’m in my 60s, that’s my whole life. I mean, that’s what we’re talking about. Here

Speaker 1 51:08
it is. So I’ve had the privilege of being in some pretty high profile national, international outlets over the last couple of years, and I would just because I had a such an overwhelming flood in my purse, my, my, my, my professional inbox, I just, I was, I had a running count because I was just dumping them all because they were coming in floods at a time, 5060, emails a day, just coming in at my these were all older individuals, typically, the vast majority of them, who had never had anybody express themselves in a way that they could see themselves, that being left behind, the feeling like they were the only one. And there are. There were cases of both men and women who were in their 60s, 70s and 80s, and still had the desire to want to learn early on. When I was not prepared for this outpouring. I didn’t realize it, but then it dawned on me, it’s like I go around and present to every single dyslexia branch Ida, all over the country and even into into Canada, our neighbors to the north up there. So why don’t I reach out to that network I’ve got, like all of the presidents of the current Ida branches in my inbox from interacting with all of them. So I’ve been connecting across North America these individuals back and then I was at my house recently for some work, and they have an adult literacy program. So they came up to me and said, yes, please direct these. I’ve lost count. It’s over 1000 if I actually added it all up over the last two years, of individuals who were adults, who are either reaching out for help. I’ll tell you the number one thing they want to do, and my administrative assistant, who has to set my calendar. Now, because of this, partly because of this, is they want to be witnessed. They need someone to hear their story, because they’ve never had anybody actually acknowledge and listen and have any recognition of who they are. They don’t need me to talk. They need to do the talking. And I think that’s important for us to keep in mind. So the people who are not being acknowledged currently are the adults who are living with dyslexia and who have survived and are making it, many of us don’t survive, and so if you survive, then we come out. That’s actually, and I didn’t write this in the review article I wrote that was peer reviewed on the dyslexia, but the sampling bias is actually those of us that survive and don’t wind up in the penal system don’t wind up dead from overdose, from suicide, from a run in with a law that we don’t get out of the other side of and we get shot down with it’s a sampling bias in research. How do you not acknowledge the fact that maybe the best of us, maybe the most emotionally vulnerable of us are actually not able to make it through this landscape to the other side to actually be adults.

Stacy Hurst 54:08
Yeah, just sitting with that for a second makes this all that much more impactful for the differences we can make, and it just brings back to to me, the notion of considering every aspect of that student that we’re helping learn to read that how that will impact them in the current situation they’re in and their future too. Teachers are important, and no wonder you used the word triage in your article that we talked about. It is, it’s triage. We need to intervene as soon as we see something, and sooner

Speaker 1 54:51
it is and it comes out of two different aspects of medicine, the RTI model, which we now use as a form, a component. Owner of MTSS comes out of a response to intervention model for the identification and differentiation in medical but it also comes out of the medical triage model that we use in our military mobile hospitals to review a triage the most in need to the highest level of intensity, and they would get the support the first so there’s actually two histories to where this comes from, as a concept that has now found its way into education, both for medicine.

Stacy Hurst 55:28
Wow, great. This has been an awesome conversation. One final question, what gives you hope right now when it comes to improving outcomes for students with dyslexia,

Speaker 1 55:41
I think what gives me hope is the reception that people have had to really honor the mental health issues, to honor the reality of what it is. And I think that part of the transition has been is that as more of us share our honest stories, who are not in a position to gain, there’s no benefit for me to share these stories. It’s just heartache for me. It’s just more weight for me to carry. But it’s important work to be done, but I don’t get belittled, I don’t get made fun of, I don’t have people question it. And I think that if I think about the world that I want Lindsay son to grow up in, that I want my son to grow up in that I want Kareem Weaver’s daughter to grow up in that I want Risha Conroy’s son to grow up in the world I want for them is world that’s more full of compassion and empathy, that we can actually honor and know that again, you brought me in this space, And we’re holding space right now for dyslexia, it’s not the only thing that causes things like this, but my hope is is that we can actually broaden our understanding of what it means to hold space and see each other and work from a place of empathy and not belittle and put each other down.

Stacy Hurst 56:57
I love that. Darnell Lindsay, any closing questions or thoughts.

Lindsay Kemeny 57:03
It was just an honor to have you. Thank you for spending time with us.

Speaker 1 57:06
Thank you so much for having me. It’s been a treat to be here.

Stacy Hurst 57:10
I honestly right now I feel like, you know, when you read a book that has a profound impact on you and you close the the cover, you just finish it, that’s what I feel like right now, after we end this, I’m going to just sit for a minute and process, but thank you so much for joining us. We have been, like I said at the beginning of the episode, looking forward to this for so long, and you, you’re definitely your work is having a profound impact. So thank you, and thank you for being vulnerable and your contributions to humanity, really,

Speaker 1 57:44
I do. And on that note, and I think we’ve created a space that your listeners can hear this. I have a really, really close friend and colleague and one of the most prominent scholars in the world of literacy and brain imaging research, and she’s always said, you know, the problem with dyslexia is that nobody dies, but we do. It’s just to have learning. It has to happen close to the cause, and the time that goes by when we actually perish is too far for the human capacity for learning to take place. So maybe it’s through storytelling and sharing that we can make people finally understand that we do die and that we should take this seriously. So on that, I think I’ll leave that because I think we can drop with that kind of a message for your people to kind of sit with as you sit Stacy and you Lindsay and you Donell and I sit with what the real message here is, is that there’s so much hope for what we can do, and the stakes are much higher than I think we’ve ever acknowledged thanks.

Stacy Hurst 58:43
Thank you so much. And with that, we’d like to thank those of you who’ve joined us for this episode as well. Go forward and apply what you’ve you’ve learned and and we hope you get the opportunity to sit with some of these profound things as well. And we also hope that you’ll join us for the next episode of literacy talks.

Narrator 59:05
Thanks for joining us today. Literacy talks comes to you from Reading Horizons, where literacy momentum begins. Visit readinghorizons.com/literacytalks to access episodes and resources to support your journey in the science of reading you.