S4E11: Dyslexia Uncovered - Personal Stories and Insights

In this episode, Juliet Hahn and Brent Sopel discuss their personal experiences with dyslexia, the importance of sharing stories, and the challenges faced by individuals with dyslexia. They critique the definitions and resources provided by organizations like the IDA, emphasizing the need for authentic understanding and support for dyslexic individuals and their families. The conversation highlights the emotional struggles associated with dyslexia and the importance of creating accessible and relatable resources for those affected.

 

Chapters

00:00 Introduction and Personal Reflections on Snow

06:05 Navigating Dyslexia: Challenges and Misunderstandings

11:25 The Importance of Lived Experience in Understanding Dyslexia

17:11 Conclusion and Call to Action

 

Transcript:

00:00:07:06 - 00:00:28:21

Unknown

Welcome back to word Blindness. Just like seeing as well as Mrs. Juliet Hahn here with my co-host Brant Sobel on a snowy Chicago Monday. Yes. It's, it's interesting. And as Lila said, the first time she saw snow, who spilled the milk and and kinda thought the same thing that you are, you know, woke up and walked out the door.

 

00:00:28:22 - 00:00:45:14

Unknown

Look to walk out the door yesterday morning. Whose filled the milk? I love that that's actually really cute. And I think you've said that before and it's like it's a good like little kids from a little kids eyes, right? I lived in Vancouver, you know, in Seattle, Saint Mary's. So we know really never seen snow. It was always raining you know.

 

00:00:45:18 - 00:01:06:23

Unknown

And then so she never snow. Summertime. So sick a few years to see that snow. And now that's all you guys have. You got a lot of snow. I mean, everyone's like it's actually Penelope. It was like it's snowing. That's crazy. It was like, it's not on. It's November. It's actually I think that's what it does there. And we were in Rochester and it was like so much rain, but it was like icy because it was.

 

00:01:06:23 - 00:01:33:12

Unknown

It was cold there. Yeah. But but we're not just in New York to talk about. I did not get the dinosaur barbecue, by the way. We didn't have time because of the drive, but, yeah, I was I was like, you're not even Elizabeth's. Text me. Yeah. This weekend, I said, don't forget about know, when there are a lot of hockey teams there.

 

00:01:33:12 - 00:01:53:20

Unknown

And telling them that, you know, a massive tournament and, you know, remember. Mitch. Yeah. Just now they're in town. So I went to see them and, obviously, one of the the kids are just, like, star. They're homeschooled, so, you know, so they're there for them for a couple minutes, but there's a couple other ones. But after the game, one of the parents comes over.

 

00:01:53:22 - 00:02:14:17

Unknown

So I really appreciate thank you for what you've done because I've spoken to the kids, you know, a number of times I'm friends with them, even though they're in Ohio. Mitch comes over to chat and and the dad goes, you know, my son's dyslexic. So I really it really resonated. And Mitch stand next to us, who's the head coach who we talk about dyslexia and how to coach kids all the time.

 

00:02:14:17 - 00:02:34:19

Unknown

She goes, I didn't know that. Oh, yeah, he's homeschooled, you know, couldn't make it. And, you know, in mainstream school and public school. So Mitch is like, why didn't I know that? We talk about this stuff all the time? No. So if I didn't go, that would've never probably opened up all year long, because that's not a conversation that you have with people.

 

00:02:34:19 - 00:02:55:17

Unknown

But even Mitch is so open about it that's, you know, some of these stories of some of these kids. And he's like, what? I don't know, just another, you know, another story, another topic. I'm not even talking about, even if you have it, even with some of the people that are open about it. And that's where like, I mean, stories connect us.

 

00:02:55:17 - 00:03:20:06

Unknown

I say that all the time. I haven't said this on this in a very long time, but that's what I embody. That's what I'm about. And it is really true. And thinking about that text that we also got this weekend that I was like in tears because I was like, I'm so happy that we're able our story is able to help someone get past the shame and the confusion and the anger, and that's why we do this.

 

00:03:20:06 - 00:03:45:21

Unknown

This is why we get on here. We're vulnerable. We talk about things. And I'm going to read something, and I'm sweaty already because I've looked it and I'm like, I first of all, don't think I'd be able to track this, but I want to preface that we are never we don't sit here and bash other organizations. We say, why are things done this way?

 

00:03:45:21 - 00:04:10:13

Unknown

But we are not here to. I don't want to say bash because we definitely have talked about we're not here to say we're better than you, that that's no, no, no, that's what I want to say. We're never to say this. However, when you're an organization that's 70 years, that's helping dyslexics. And if anyone's listening to this, that is a big fan of Ida, I would love Ida International.

 

00:04:10:15 - 00:04:27:08

Unknown

I would love for them to talk about it because I am so confused and it goes back it actually when the new definition came back and everyone's like, this is so great, this is so great. And I went to read it and I was like, okay, I had to read it 30 times. I still don't know if I comprehend it at first.

 

00:04:27:08 - 00:04:48:14

Unknown

Of all, the way it's formatted, the the text, there's so much wrong with it. And it brought me back when Montgomery was diagnosed, and this is before I read it. Everyone sent it to me. This is where you need to go. This is where you need to go. And I remember going to the website and then being like, Maybe I'm too stupid because I don't understand and I feel really alone and feel really shitty.

 

00:04:48:16 - 00:05:14:01

Unknown

And it's probably before I was like, okay, I am truly dyslexic, but it was like, okay, I learned it right? And it was a really hard time. And then having this website that everyone was like, this is where you need to go. You'll learn everything you need. And I couldn't comprehend or understand it. Every time I opened it, I felt so overwhelmed and so on my own island and again felt really dumb and was like, I'm okay, I'm really dumb.

 

00:05:14:03 - 00:05:32:08

Unknown

You said something and I actually was not going to bring this up. And I'm like, oh, you said it twice now, and I've never really I've never said it out loud. But Megan, my sister, when Bradley was getting diagnosed, I was like, okay, he got diagnosed with dyslexia. And when we were going in, you're going to be like, I can't believe you never said this.

 

00:05:32:08 - 00:05:53:22

Unknown

And I could get choked up because I was like, going to tell you after the recording. But I'm like, no, it's actually this is why we do this. When we were getting Montgomery diagnosed, there was a part that I stopped because I was like, fuck, what if he doesn't have dyslexia and he's just not smart? And because that's how I always felt.

 

00:05:54:00 - 00:06:18:20

Unknown

And I remember the relief that I got. And I know I've never said this to you because I kind of just, like, shoved it because I was like, oh. And so whenever and I felt like that for a long time because I wasn't diagnosed at an early age because it was just like, you struggle to read, but you're just dumb and you just recently brought it up again, because that mom in Ohio, when we had this conversation with someone over the weekend, you said it again, like gut punch to me in a different way.

 

00:06:18:20 - 00:06:43:13

Unknown

And I was like, fuck, okay, I think I need to deal with that and talk about that. And it was and I never wanted to say because I knew Montgomery was smart, but I was like, well, maybe he's not dyslexic smart because those people are supposed to be really, really smart. And I remember waiting for the diagnosis and then being so fucking relieved that I was like, but this website didn't help me.

 

00:06:43:15 - 00:07:06:02

Unknown

It actually made me feel worse. And I want to say that and it's not, again, a bash to them, but it is a bash because we talk about that. If you don't have dyslexia and you're trying to tell us how to feel and how to think and what we should do, you're missing the mark. Most of the time.

 

00:07:06:04 - 00:07:37:06

Unknown

And I'm sorry I was not planning on that at all. When we were driving home from Rochester, I was listening to something and I was like, fuck, I need to talk about that because I after we got actually the text and I was like, I need to talk about that because I didn't. And I never wanted to say those words out loud because I never, first of all, wanted Montgomery to be like, wait, actually, because I was panicked, I was panicked, oh, it's going to be because I was told that you're not dyslexic because you're just not smart enough.

 

00:07:37:06 - 00:08:20:00

Unknown

And it was. It's a really shitty fucking feeling. And that's, Oh, okay. And I'll preface, you know, kind of a story. We had a call with, somebody last week, who said you know, we've sent us, pretty meaningful, thank you know, he's, you know, he's his mid 60s and just start talking about dyslexia, six months ago because of you, you know, so, to kind of fill in some of the blanks in that story, will be a day where he, you can tell it and the whole story.

 

00:08:20:02 - 00:08:43:16

Unknown

We'll have him on here, you know, in, you know, in his way. But, the shame, the what if I am an hour? What if I wasn't? His, hamster wheel with more than one hamster on there.

 

00:08:43:18 - 00:09:11:19

Unknown

All day long and, you know, that's, you know, am I going out into into that? You know, starting as, as a parent that's in your head. And you're approach towards or you're approaching for information. First off, your brain's moving fast, so you're not really focused. Good. Now you're worried about your kids. There's something wrong with my kid.

 

00:09:12:00 - 00:09:37:21

Unknown

So you're. Are you going to miss. Let's just say quarter of the information. Just because you're a parent, you're worried, you know, then you're going to click on something where you're talking about the brain, where you can't see. It doesn't make sense to you because our brains are different on a page. You got to put that into. I take it you know how I always is.

 

00:09:37:23 - 00:10:02:17

Unknown

Take out a doctor terms. I don't know in those doctor terms. That's how you have to feed the information to the people. I know the people, whoever that may be. I'm a teacher or a grandparent or, you know, grandma or a mom or dad looking for information. And that's what you didn't get an idea, right? And then.

 

00:10:02:19 - 00:10:28:10

Unknown

Put you down and down further. Right now, you're not you're you're missing more information that could be out there for you. You just. This is how the body reacts. This is how it goes. It doesn't some more confused. You get a parent. That's information and you just got it. You've got to keep it simple. And they're missing the mark by, classifying the new definition for dyslexia.

 

00:10:28:12 - 00:10:31:12

Unknown

You know, first off.

 

00:10:31:14 - 00:11:08:19

Unknown

Sex is brand new. Around over 100 years. This idea's been around for 70, and we still don't know anything about dyslexia. It doesn't make too many sense. Then you go on the website, on to there. It clearly tells us us whoever is on the top isn't dyslexic. Kiva agrees with Michael, plain and simple. Exactly. And it's again coming from theories, not live experiences.

 

00:11:08:21 - 00:11:30:19

Unknown

And even me like just sitting here thinking, that I can't believe I said that out loud. It's uncomfortable. It's really uncomfortable. It's really uncomfortable. And I've done so much work in obviously the space on myself, but it's that protective mom mode. Correct that right now for whatever. I think it's the stars and the moons, but we'll leave it at that.

 

00:11:30:21 - 00:11:56:05

Unknown

I have that where it's like, okay, your kids are getting older and all, and parents can say all you want to do is just you don't want them to hurt like you've gone through hurt, but you know that that hurt also got you where you are. So it's this weird feeling, but like, it sucks. It sucks. And it's like you go to a place because you're like, this is what people are telling me to do, and it's not feeling right.

 

00:11:56:05 - 00:12:13:04

Unknown

It's not working. And it and it makes me feel worse. And this is where then talking about the self-awareness, where you have to be like, if someone tells you to do and you go to this website and you're like, something doesn't feel right, find other information. Don't make yourself feel shit that you're not connecting with this, because that's what I did.

 

00:12:13:09 - 00:12:25:05

Unknown

It was the same with like, sleep training with your babies, right? I didn't sleep train. And I everyone told me when a failure that my kids were going to, you know. Oh, you shouldn't do that. But I didn't innately want to. I was like, that's not good. And now all the studies coming out that it's actually really bad.

 

00:12:25:06 - 00:12:40:19

Unknown

It's no idea of your time. I know, so don't worry about teaching you. Let your kid cry it out as well. As moms we were told we should do. And I was like, never letting them cry it out. I'm going to like, do you have GPA right now? But I know I cried. She wants to go play in the snow.

 

00:12:40:21 - 00:12:53:01

Unknown

But it's the same thing. We have to. That's where we need to be, like. So aware of ourselves. And it's really hard when you're in this world. And so I'm going to read this.

 

00:12:53:03 - 00:13:16:15

Unknown

And I think I can put it up so you guys can see if you're on YouTube. I mean, I have to like, take my long dive 50, 50 lines. Yeah, I got to I got to take my finger and, and go, this is going to be painful. And I just want everyone to realize that because I'm sure that and I'm nervous doing this because I also didn't read it before, which normally I would have read it a million times, so it would have flowed.

 

00:13:16:15 - 00:13:41:11

Unknown

And this is going to be raw and you guys are going to hear it and I'm going to do it. So this is what, came out October 22nd, 2005, and it's adopted by the Ida board of directors. Just leave it there. Let's see. I don't, you know, whatever. For more detailed content, please visit. And then they tell you the explanation and I will show you that afterwards, which then it talks about.

 

00:13:41:13 - 00:14:09:03

Unknown

It's a consensus project remains available from 2000 and, 2002. Did I say that right 2000 to 2002, 2002. That's a 2002 two zero, isn't there? This is this is going to be fun. Okay. So dyslexia is a specific learning does. But I mean you can see my hand is like shaking. If anyone was on the side and could feel my energy I'm like a fucking wreck right now knowing that I'm reading this okay.

 

00:14:09:05 - 00:15:24:21

Unknown

Dyslexia is a specific learning disability characterized by difficulties in word reading and or spelling that involve accuracy, speed, or both, and vary depending on the orthography. These difficulties occur along a continuum of severity and persist even with instruction that is effective for individuals. For the individuals, peers, the cause of dyslexia are complex and involved a combination of of genetics, neuro biological and environmental influences that interact throughout development, underlining difficulties with phonological and moreover phonological processing are common but not universal, and early oral language weaknesses often foreshadow literacy challenges.

 

00:15:24:23 - 00:16:11:21

Unknown

Secondary consequences include reading comprehension problems and reduced reading and writing experience that can impede growth in language knowledge, written expression, and overall academic achievement. College psychological well-being and employment opportunities also may be affected, although identification and targeted instructions are important at any age, language and literacy support before and during the early years of education is particularly effective now.

 

00:16:11:23 - 00:16:38:23

Unknown

Fuck radio free job. Great job writing and a great job with the fuck yes. Thank you. Because I got a harsher I got harsher words for them than that. And then this is where they send you. If you want more information. Now, how the fuck? And I'm going to say it again, I'm sorry, because I know if maybe a teacher wants to use this or learn.

 

00:16:38:23 - 00:17:04:15

Unknown

I'm sorry, but that angers me so much because it first of all, brings me back to when I went to go find information and learn, and I can't, I I'm not comprehending any of that. There's stuff in there that I also don't think is correct, but I'm not going to I don't know because I'm not a doctor and but I, I'm going to disagree with some of what they even changed.

 

00:17:04:17 - 00:17:22:10

Unknown

That is supposed to be where okay. They do teachers training. They have a couple other things. And I would love someone to send this to someone I need. I please send this to all the board members and have them come and call us and talk to us, because I would love to know who decided that this is a good idea.

 

00:17:22:10 - 00:17:40:18

Unknown

It's someone that's sitting there that's thinking, oh, I'm going to be up on my pedestal and telling people what they need to learn and what the this literally parents. And then there's a parent fucking handbook and a parent area. No, it is especially most of the parents this, okay, good.

 

00:17:40:20 - 00:18:04:14

Unknown

I'm so angry right now. And I was having a really good morning. Oh. All right, now I'm going to backtrack. This is, you know, in in conjunction or wherever the word was, was the idea, board members. Oh, at the bottom when I first read. Yeah, yeah. So let's go back to Kid Prophet to everybody here. You know, dyslexia obviously is the second most common thing in the world.

 

00:18:04:16 - 00:18:46:20

Unknown

Next cancer. And there's heads of cancer wards and hospitals and research. There's headquarters running things there. There isn't for dyslexia. So who in God's green earth gave, the red carpet to Ida to make definitions and change definitions and clearly ran by, you know, doctors or whatever it is, because I don't remember what the definition started with. I had to go, I think every word for word to hear the word, to understand the word.

 

00:18:46:20 - 00:19:00:00

Unknown

Then I forgot the first words. I can't even tell you how you opened up. Reading that you you did a great job. I wouldn't have finished it, but.

 

00:19:00:02 - 00:19:33:19

Unknown

Yeah, well. And the the definition itself. But the way they they display it, you know, it's not for a dyslexic person hearing, you know, you know, your best business is, is you're targeting every single person in the world, right, right. And now if you go and take away a huge portion of 50% of your business by doing something differently, is that smart business?

 

00:19:33:21 - 00:20:00:15

Unknown

That's what they're doing, right? You know, and it's dyslexic friendly. You know, this weekend was it went to, see your sister and they went to an event and there was, I'll leave some of the names out to, she's there with her sister. There's an interview going on with this famous gentleman. You'd know everybody knowing that if I said the name.

 

00:20:00:15 - 00:20:27:11

Unknown

But. So. He's talking to an interviewer, and he's talking and, says something that catches her eye, her her ear. A couple minutes later, you know, it's like, I like to work construction. I think when I was younger, I work with my hands, turned her sister and said, he's dyslexic. So what are you talking about? Sure enough, googled it and it was.

 

00:20:27:12 - 00:20:51:04

Unknown

You know, they walk outside events over. I have a great time. Not two steps outside. She looked up. Tell us how on God's green earth did you know that? Like you knew before? You know that stuff lying to me, tricking me right? So that story you've got the person who can't believe she knew he was dyslexic. Go without saying.

 

00:20:51:04 - 00:21:00:22

Unknown

He's dyslexic. The nuances, a lot of things that we live every day that that is forgotten. That's who's creating the definition.

 

00:21:01:00 - 00:21:20:10

Unknown

Right. For the person who knew he was dyslexic, not she's not Saxon, but she's married to one. So she now I know one understands the nuances, but the person who had no clue how she figured out is the person who's writing the definitions.

 

00:21:20:12 - 00:21:47:08

Unknown

For everybody. Does that help me and tell me how that makes sense? Right. And it's because of her listening to you and seeing you. Right. And it's hard. It's and I'm going to read something when it says when you look at dyslexia through the lens of lived experiences, not theory, you understand how deeply it impacts every day.

 

00:21:47:10 - 00:22:14:18

Unknown

And just think about it's how it impacts us every day. And then someone goes say oh we can help you dyslexic person, come to our website and then you feel dumb because you're like, I can't understand any of this. How is that supposed to be helping? I can stay, yeah. Go ahead. 30 people. Yeah. Stay in our lane is what you're going to say?

 

00:22:14:18 - 00:22:30:18

Unknown

I was gonna say stay in your own fucking lane. Get out. Or, like, get out of the parent. Not now. I'm not talking about the sober foundation robot. I'm talking about get out of the parents lane. You don't know what you're doing, and you're making it worse. Yet there might be a mom or dad that's not dyslexic, and their kid is.

 

00:22:30:18 - 00:22:53:13

Unknown

And they can go and they're like, oh, interesting. But 1 in 5 and it's hereditary. A lot of times it's going to be one of the parents, and you're making that parent feel absolute shit. And I would say, I'm not going to go into the statistics because I'm not doing that. But. Stop acting like, you know, and and it's all on LinkedIn.

 

00:22:53:13 - 00:23:08:09

Unknown

All this PhDs. Oh, look, we changed. Isn't this great? And I remember I said to someone like, it's not great. Did you read it? And they were like, oh, well, no. I thought it was like a good thing because it and I'm like, read it. And tell me that you can that like, did you lose your space in that paragraph, like the space.

 

00:23:08:09 - 00:23:33:15

Unknown

Everything to it, everything down to the way the letters are smushed together. It is torture. So it's not even like some one color. Okay. Yeah. Everything right? It's it's it's like. It's like someone was like, hey, let's fuck with the dyslexics and pretend like we can be in their sandbox. It is down to everything. The way that they have the website laid out, the way the paragraphs are.

 

00:23:33:15 - 00:24:06:10

Unknown

Everything is not dyslexic friendly, and even if there's dyslexic people on their board, if they call it and they say it, you guys are not being honest. Because if you can fucking wade through that, then you. I would love to know when you were diagnosed and how you've worked through it and all these different things. But the majority of the people are not fucking getting through that and you're feeling shit afterwards and you know, and getting through it okay, is once and retaining it.

 

00:24:06:10 - 00:24:30:06

Unknown

And it's to three is understanding it. I didn't get through all three of those. Any of those three I should say no I there's parts I mean first of all like the words you use like f off. Okay, I hate it. It's like, oh, and I was just going to say something and I'm not I'm not good. Oh, I was just going to go, nope.

 

00:24:30:08 - 00:24:47:02

Unknown

You know, I mean, I've gotten in your pocket protector. I was going to say it's and I'll say it later. I'm not going to say it, but it's it's it's it. I think it's, egos. I don't even think it's lab coat and paprika for doctors. I think it's a bunch of fucking egos that are like, let's be nuts.

 

00:24:47:03 - 00:25:13:23

Unknown

And I just saying. And I'm not going to say I know I again. Well, I've said it many times, I've, I think I'm, you know, billionaires and millionaires and all these guys, they've got less of an ego than people that, playing this sandbox mean. I think I'm, I'm insane by saying that they're doing great things, are helping.

 

00:25:14:00 - 00:25:39:03

Unknown

No, no, no, no. And I think we can leave it there because I have a lot more to say. But I would like this to be brought to someone from Ida. And I would love to get in the conversation. And I will listen openly, because I am a reasonable human. For the most part, don't make that face.

 

00:25:39:05 - 00:25:53:14

Unknown

But I would love someone to come and give me the explanation of who decided this was a good fucking idea, right? Okay, like rate review and share, please. We'll see you for another episode of Word Blindness. Dyslexia expert.