Episode Transcript
[00:00:00] Speaker A: Hey everybody. Welcome to today's show. I'm super excited about this one. I've been excited about a lot of our recent guests. Last week Del Big Tree was awesome. But this week's gonna be just as awesome.
Dana. Dr. Dana Johnson with spellers and the website. Two websites, Dr. Danajohnson.com and spellers.com. before we jump in and bring Dana on, guys, I just want to say I think it was J.B. hanley, if that was on the show some months ago, said that he thought we were kind of in this season of kind of like with tobacco back when doctors used to recommend tobacco smoking in particular and there were advertisements in the medical journals, Doctors recommending Marlboro vs Winston vs Camels and you know what doctor recommended which brand.
And it was just this foregone conclusion that if course it's cigarettes are safe for you. And then it moved into wait a minute, maybe they're not some kind of conspiracy theory kind of fringe. People were saying and the science got a little buried, manipulated, ignored and argue, argue, argue and no, no, no. And then but eventually coming out the other side when now it's well of course cigarettes are not healthy for you. It's like just there's no question, I mean anybody would say yes to that now. So and he what JB was saying with vac again, hyper vaccination, so many so much so early. And like we talked about last week with Dale, there's potential unintended consequences and one of those unintended consequences is neuroinflammation. You know, CDC just recently changed their website to say we have no evidence now to be able to tell you vaccines are safe and effective.
That's a huge shift and a huge statement to put on the CDC website.
Of course we've talked about vaccinated versus unvaccinated studies and safeties and stuff and sometimes it's easy get lost in all that debate and controversy and just all of it.
Well, this is today's show we're going to talk about with Dana.
Just amazing.
Probably some heart wrenching stories about kids who for whatever reason their brain got damaged and a lot of times because of the vaccines, if not all the time. We'll have Dana give her thoughts on that.
But bottom line, they're injured kids and used to we thought, I'll say we, I don't know where Dana used to think but for me and physicians, colleagues of Monarch and say because we were trained, we thought these kids with autism, autism spectrum diagnoses were or cognitively damaged, meaning they're, they're just, they're at a level intellectually that's very, very, very low. They can't understand. They can't, not only can they not communicate, but they're just in intelligence factor is very, very low.
And if you think that that could influence how you talk to them and how you treat them and other things. So turns out we were wrong about that.
And not only were we wrong, but probably exactly opposite. These kids are showing now, and there were three of them I got to witness at the Children's Health Defense Conference recently in Austin, their annual conference, some kiddos on stage answering questions during an interview.
It was by far, I mean, everyone I talked to, hands down, the most impactful of all. Three days of that conference, you know, hour of the whole thing. It just touched people in such a dramatic way. And Dana Johnson is a big part of that. So, Dana, welcome to the show. Thank you for being who God made you to be and for stepping out and doing something different and, and really touching these kids in a way that, where they can express themselves again. And I can't wait to get into this interview and hear your journey and your story. But welcome to the show.
[00:04:15] Speaker B: Thank you so much, Ben. I'm very excited to be here and to talk more about it.
[00:04:20] Speaker A: Well, and for those who don't know, like I just said, spellers.com, the website, maybe give a brief on what are we even talking about. But then we want to back up and get your journey of how you got to where you are today, but kind of give that overview of what we'll be talking about today.
[00:04:37] Speaker B: Yes. Now when most people hear spellers, they think spelling bee. So spelling, you know, that usually is what comes to mind, but what spelling actually is for those who are non speaking, because it extends beyond autism. Now, autism is primarily the diagnosed non speaking. Autism is primarily the diagnosis that I work with. But I also have individuals who are diagnosed with down syndrome or another genetic issue. So it's not just autism, which to me is fascinating and we can get into that in a little bit. But spelling is essentially teaching an individual the motor skills to be able to point to letters to spell as their reliable way to communicate. So as you mentioned at the conference, there were individuals who used a keyboard and, or actually there was one that used a letterboard which is 8 and a half by 11 piece of paper that has all the letters on it and they literally spell out everything that they want to say and communicate.
Now the challenges with it is that when people see it like they did at the conference. Or if you haven't seen Spellers, the movie, the documentary that is actually one that JB and his son were both in, that was based off of loosely, the book that he wrote, Underestimated. And so then we did the documentary, and you saw individuals who were doing this both on the keyboard and on the letterboard.
And parents, you know, think, okay, can my child do this? Or they think, no, my child can't, because he can't demonstrate even identifying letters.
What's not fully understood, and this is what I would love to talk more about is what even I didn't know. And that was that their challenge, as you said, isn't cognitive based.
It's motor based. It's. They have a disconnect between their brain and their body is really what we say in general, but essentially it's not being able to put their thought into action.
And what we call it is whole body apraxia.
So some of your listeners may have heard of apraxia, which is. If you Google apraxia, you will quickly come up with, well, the individual has trouble articulating or speaking clearly. And it's a little bit different because that's really related strictly to speech.
For my clients, it's an entire body. That's why it's. We call it like whole body apraxia, where they, they have an idea, they want to do something, but they can't actually do it. And so it is related to speech because it's like, well, why can't they, you know, speak? What's. What. What's happening with those who are non speakers?
It is. Is that disconnect and not what we have. Traditionally, myself included in what I was taught that they have a cognitive disability.
[00:07:58] Speaker A: Yeah.
So basically, like, I want to scratch my nose right now. I mean, there's a motor dysfunction where potentially they can't. Their brain's thinking, I want to touch, grab, do whatever. But even a fine motor in particular, I mean, for folks that haven't really thought through this, to, to make a word, to make that sound. There's so many different muscles and movements in the face, in the mouth, tongue, soft palate, vocal cord. The whole thing's so complicated and complex. Amazing design, but that's, that's movement. And so if there's a, you know, think of someone who's had a stroke, people probably familiar with this, where they can't. Sometimes after a stroke, it depend on the part of the brain they just can't speak. They can't make that word. Other parts of the brain, they can't use their left side, you know, arm and leg or whatever. So that's kind of what Dana's talking about here.
Okay, well, I definitely want to talk about those three individuals for sure for the conference. More than that, though. But let's rewind and go back background wise, give us some of your backstory.
How did you end up on that stage at the conference? But, you know, professionally or even personally, your journey into where you were to where you are now, Kind of share some of that for our listeners.
[00:09:11] Speaker B: Yeah, yeah. So I.
My. My master's is in occupational therapy. So I, you know, have always wanted to work actually with individuals with autism. I just, I remember when I would oversee a children's camp, and one of the individuals that I would work with was a non. He was a non speaker, and he would wear a tie dye shirt every single day. And I was like, his mom's brilliant because we're going to see him wherever. And he was like, such a cool kid. And he was probably the reason why I was like, Autism 1, it fascinates me. And I just think that, you know, he was tricky. His body was impulsive. He would get dysregulated, he would get stuck. And I just really connected with him. So it was at that point where then I decided this is, you know, the population that I wanted to work with.
So I really dove into autism, looking at neurology behind it, looking at, you know, and learning as much as I could, and then started out my practice. And it was when I read the book, it's called IDO in Autism Land. And literally in that book, he said, ot did nothing for me, and he was a non speaking autistic individual. And I paused and I was like, okay, I need to listen to this because this is my clients, essentially. And he used a keyboard to communicate and write his book. So he said it was fun. I could swing. You know, we have all the sensory equipment, right? And my gym was filled with sensory equipment. I had a ball pit I had which individuals with autism do have sensory processing challenges. So I knew that, and that's what I was taught. But what was missing is addressing the real issue, which he further described as this disconnect between his brain and his body. So it was almost like he's. His brain wants to do something, but his body goes rogue. You know, can't do it. And so it was at that point where I was like, okay, I need to learn more from these individuals. And so it was reading through that that he said what really Helped me was, you know, doing, like, going to the gym, essentially, like, working through functional movements that my body, you know, needs to learn, practicing them over again. And that then helped with that conn. Connection.
So I was like, okay. So I changed my. My clinic out and put in. I have treadmills, I have a squat rack. I have, you know, all the things.
And that was the. The whole body apraxia portion of it. But then I started to learn more about spelling because initially, you know, I. I had a colleague of mine, she was a mentor, another ot and she reached out to me and she was like, dana, you really need to see this. And. And she was referring to spe.
I, like, I do with almost everything. Google, look it up, research it before I decide that this is something that, you know, I think would be great. When you Google it, there's a lot of controversy. And I was like, wait, what? Like, I looked at her as a mentor and I'm thinking, what are you thinking here? And she said to me, she goes, well, if you think about it from a motor planning perspective, meaning that they have ideas and thoughts and they want to communicate, but they've never learned the motor skills to be able to do it. And I thought, oh, okay, well, that actually, you know, makes sense to me now. I can kind of, you know, get on this. So it just kind of carried on from there. So training that was about 2014 went and I was trained and then ended up training others and, you know, really now have built spellers essentially as. As a way to be able to educate not only, you know, professionals, but certainly parents and be able to give a voice to those who don't have a voice. And, you know, since I've started, I really felt like there was a.
A lack of understanding on what the actual issue is, because parents would come in to see me and, you know, they're like, I don't know if they can do this because they can't identify letters. You know, I don't think they were formally taught how to spell. You know, and their. Their son or daughter might be 25, might be 15, might be 40. You know, I don't know. And from what you see in the documentary or what you saw on the stage at the conference, these individuals are spelling out full sentences. They're. They're responding, like you said, Ben, to a question about their experience. And it's not just one or two wor.
Or like, phrases.
And they didn't start there. None of them on the stage, none of them on. In the documentary didn't start typing on a keyboard. Because if I did that, that's such a high level motor skill that they wouldn't be able to do it. They have to go back and build the regulation of their body to be able to, you know, do something that's hard because so many of them have dysregulation or self injury or, you know, impulsivity.
So they have to learn regulation. They have to learn those fine motor skills of being able to use their eyes to look for the letter and then poke it. There's a whole sequence of things that need to happen that we as individuals who can, can do things mainly automatically every day, don't think about. And so when parents are kind of surprised by, okay, this is where we're starting. But I thought. And then when they learn about, oh, it's a motor planning issue, okay. And it's just, they've never been told that. They've always been told that my child has an intellectual disability, an IQ of 40. You know, they're just, they're going to have the capacity of a three year old. I just accepted that.
And I'm excited to say that I just get to tell them that they're wrong. You know, they're wrong in the nicest way possible. But, but it's, it's, it's an emotional journey for families, as you can imagine.
But I decided to really get out as much as I can to, you know, talking to individuals like yourself and, and explaining what the actual issue is. It's not a cognitive issue, it's a motor planning issue.
And I give an example too, like how I'll ask the question, I'll say to the parents, like, how does your child right now demonstrate what they know? Right? Like, explain to me what that would look like. And so they'll say things. Well, they have to, you know, choose the cow from three different animals, right. They have to point to what their answer is or circle their answer or speak.
Well, all of those ways of demonstrating your knowledge require intentional motor skills. And so if they have, which they do, a motor planning challenge or disability, they're not going to be able to reliably demonstrate their knowledge. So first we have to work on the motor skills and then they can demonstrate what they actually know, which is always far beyond what their teachers or parents actually think. So.
[00:17:01] Speaker A: You mentioned controversy when you googled this originally.
Maybe share with the audience some of that story. And even going into like, who and how this was first discovered, you know, when did we get from where everybody just assumed cognitive, you know, 3 year old, 40 IQ to. When did that happen? Who discovered that or who, what group? And then the transition and then the controversy of that.
[00:17:29] Speaker B: Yeah, so a woman named Soma and I can never pronounce her last name. I'm going to totally butcher it.
But it was actually in 2000.
I'm trying to think of the actual date, but I was 13 years old, so I, I'm not going to tell you the date because then they're going to be able to calculate what my age is. So I was 13 years old. And this is how vivid this was. I was sitting, I know exactly where I was in my parents living room sitting on a couch. And they were watching 60 Minutes. So I was sitting there watching it with them and I remember seeing this tiny little Indian woman with, you know, full dress on, all of, all of that coming in and, and she was being interviewed and her son was there and she was showing the reporter, you know, what he could do. And it was using a letterboard to point and to, you know, demonstrate and his knowledge and then respond to this, this reporter. And I just remember going, that's really amazing. And then that was the end of it. Right. Obviously. And then it was 2014 when I was introduced again to the same Indian woman, when my mentor, you know, she sent me a little clip and I was shocked because I'm like, this is the same woman. And so Soma was the one that created what's called rapid prompting method, or RPM for short. And she did so that her son had a way that he could demonstrate his academic learning. That was really the goal of, it was more academic based because she was just, I mean like many parents are just really frustrated with, you know, he was being taught numbers, shapes, colors, like all this over and over and over again.
And so then, you know, at that point in 2014, a speech therapist, Elizabeth Vossler, and that was the original, the original provider that JB and Jamie went to, she was a speech therapist. So she then took that and was like, well, wait a minute, this could actually be a form of communication, which as a speech therapist this made sense.
And so then, you know, fast forward a number of years later and I, myself and co founder Domre gave in.
We were like, well, but there's a lot of this motor planning because I'm an ot. And so I understood that. And so that's when we implemented through Speller's method, more of that whole body apraxia piece, also vision, which is a huge component of motor planning.
So we incorporated and added to essentially what the letter boards have always done and, you know, seeing very complex profiles be able to do this is really amazing. And it's because we're really teaching parents. I mean, this isn't something and even my families, you know, had to get used to, but this isn't something that's traditional therapy. Meaning typically if as an OT or a speech therapist or a physical therapist, the parent would bring the child to us and then we would work with them, and then the parent may get a little bit of information at the end to say, practice this at home, and then they're on their way. This is very much a parent driven program because it's just like if you and I are wanting to learn how to play golf or pick up tennis or crochet, I mean, you name it, right? We've never done it.
We have to practice those skills over and over again. We can't. Most of us can't just go out to the golf course and, you know, know, shoot par or below. Right. Like, it's something that we have to really practice. And so that's the same premise is we're teaching the motor skills and then we're working towards being able to use it as a form of communication.
So that's kind of the, the background of how it got to Speller's Method.
And it did. It stemmed from, you know, JB and the movie and, you know, getting that all going. And, and, and we're still, you know, moving forward with innovation.
[00:21:56] Speaker A: How much resistance, pushback, just lack of understanding. But I know there's. I don't know if it was JB or in his books mentioning kind of the conventional standard protocols, if that's the right word, that therapists are trained in doing and their licensing boards are involved in that.
And then you bring in something kind of new alternative.
In my world, that could be labeled quackery.
[00:22:23] Speaker B: Yep, pseudoscience.
[00:22:26] Speaker A: Yes, exactly. Yeah, that part of it. So speak to that some.
[00:22:32] Speaker B: Yes. Jumping into this world, you know, really, I, I'm not scared of controversy in any way, shape or form. And I think that, you know, this is what I've been, this is what I meant to do, because those things don't ever bother me.
Aside from when it affects any of my clients, you know, or any of my families, then it's like, okay, I, I'm become, you know, definitely more defensive of that. But yeah, I think that, you know, the controversy, I feel, is based on threats, like a threat threatening to their whole paradigm, essentially. So, for example, applied behavioral analysis is the most recommended Therapy for individuals when they're first diagnosed. So parent goes in, you know, they get that diagnosis. Your son or daughter has autism, you need to do OT speech and aba, right? And even if it's interesting because it says Applied behavioral analysis, and if for those of you who don't know what that is, that's an intervention that literally was based on individuals to train them essentially to be more appropriate and socially acceptable in the environment. Now that was way back at this point. Now they're trying to make it more play based and more because of the controversy with that.
However, when it actually comes down to if one of these individuals actually is competent and does have a way to communicate, then where does that leave us? Because we're trying to train them to not be something that they're, you know, stimming or yelling out, doing inappropriate things according to, you know, our culture.
They're threatened by this, by a lot. And so I think that that's part of where, because if, if this became mainstream, I mean, I don't know why there would be a need for non speaking individuals to have aba. That's my opinion. Because then we could be like, okay, so you know, tell me a little bit about why you're doing this behavior, right? Like we could actually get insight instead of having to guess which the majority of time were incorrect.
Because, you know, they're in pain, you know, they have medical issues that people don't know about anymore. You know, things like that. Like at the conference with Kaden, he said like spelling saved my life because he could say that he had pain and they found that he had cancer. Like that's, that's a big thing. So, and, and that's a amazing example. I think that even just getting better understanding of that individual and why do they have quote unquote behaviors.
So that's where one of the major organizations or group of individuals really do come down. Because I feel that, that this method, if everybody was spelling, then they wouldn't have, they wouldn't, they wouldn't need it anymore. So that's one. Speech therapists on the other hand, they're, you know, they've written many documents on, to their licensed speech therapists to say like this is pseudoscience. Do not do this.
Threatening to as much as they can threaten.
And I feel with that it's because, you know, we're, we're bridging. I'm an OT and I can do, you know, assistive technology for communication and to support.
But not everyone is an OT or a licensed professional who is Actually acting as a provider or supporting. So they feel threatened because this is a form of communication. You're outside of your, you know, scope of practice.
It, it, it's really based on, oh my goodness, like this is threatening our whole philosophy here. That's what I feel is the reason behind that controversy. Because the main or the loudest people that are screaming about this, I don't know if they have actually interacted with any speller or if they understand the motor planning issue.
They're thinking the person who is holding the board is moving the board is influencing them, is somehow, you know, and in Speller's method, we don't touch them as they are pointing. I mean, you saw Ben, like the parent was holding the keyboard or holding the letter board.
And you know, it's, it's not that we're moving everything so that they're hitting these board, the letters that we're wanting to.
It, it has to. We, we have to look at this like this is learning a new motor skill. We're not accessing their ability yet. We have to do that first. And that's again part of the misunderstanding, I think with it. And then parents kind of get a little cautious about it because they've heard that controversy.
[00:28:02] Speaker A: Right.
How long has has it been since Spellers, the documentary came out and sent and that you've been doing what you're doing?
[00:28:11] Speaker B: So Spellers came out in 2021, 2022.
And so it's been out for a couple of years. I have been doing this since 2014, so it's been a while. And you know, it's. I'm blessed. I can't believe that I have this opportunity to do this and to meet families and to, you know, give their kids a voice and to see how that changes the lives of the entire family, you know, siblings. It's so great to see siblings and to have them there.
You know, my oldest client was 58 years old when she came in and her parents brought her. They were well into their 70s. And I coached her mom to be her communication partner. And I saw them maybe, gosh, they were with me for about six months, eight months. And I saw them just, just a few months back. And she's Spanish speaking, which doesn't surprise me because they're. That's, you know, the parents primary language is Spanish, but they were always told, well, she's got to go to school and it's English, so don't confuse her and so speak only English. But meanwhile, she's picking up on all of this Stuff.
So she's Spanish speaking, doing, I think she does ballroom dancing. Like, it's just, it's amazing. It's amazing.
[00:29:39] Speaker A: Did they share anything in those first, you know, initial weeks or months when they were, I mean, this is the first time you're getting to HEAR you said 58 year old.
[00:29:52] Speaker B: She was 58 years old. And I won't forget her ever. Not well, I mean she's 58, so I will never forget her. But I remember the first session and I went into my waiting room and I saw both her parents were sitting in the waiting room and she wasn't around. And so I was like, okay. But then I, the door to the outside opens up and she's standing there, not coming in, but just standing there. And then she just starts screaming like she was just so overstimulated and dysregulated because, you know, it's the first session.
Most of my clients come in. It's, it's, you know, is this a doctor's office? Like what's happening?
And I'll never forget it because her parents just stayed there. And then, you know, it's one thing to have a four year old or a five year old standing in the parking lot screaming. Completely different to have a 58 year old.
So, you know, I walked out and I just coached her to come in. And she comes in and she's still very dysregulated. But we got through those initial sessions and this is the thing. It's, it's, it's. The parents don't hear the authentic voice of the speller until they built those motor skills. So you know, we say it's typically about a year. So you know, fully trans, full transparency here.
About a year before you're going to get to what we call open communication, meaning back and forth, being able to, to do what you saw either in, at the conference or in the documentary.
But what the biggest contributing factor is is practice at home.
And that makes sense because if I want to become a pro golfer and I practice once a week, probably won't get there, right? Because my motor skills are. I'm not going to have that same repetition in that practice. So the same thing goes. And that's where JB and Jamie crushed it because I mean this was their mission and they practiced like multiple times a day and to get there.
So, so that was, yes, that was my, my client. I have a number of, lots of.
[00:32:07] Speaker A: Stories, but yes, what were maybe some of the most like tear jerking or emotional or just wow, aha. Moment. I Mean, I remember some of Jamie and JB's talking about, hey, dad, you remember that one time when you took me to school and that math teacher said, whatever, whatever, you know, here's what really happened. Or I heard. I was hearing this whole thing. I knew what you said here, you know, those kind of revelations.
And I just can imagine with the 58 years of that, with this one client. But did any, any of these parents in. Of any of the clients share some kind of stories like that, of just incredible wow. That whole time you knew this or knew that or I was treating you this way and you know, that kind of thing?
[00:32:54] Speaker B: Yeah. The one thing that I see across the board is just how forgiving and gracious these individuals are.
Because I think that when families, when parents are sitting there and they're kind of processing all of this, I hear a couple of things that are common. The first thing is I knew that they were in there.
And that always gives me chills. It does right now.
Because we as professionals have. Now we're different, but in general have always told parents the wrong thing. Now we believe that what we were saying was, Was legit. But I just, like, I'm thinking to myself now, like, parents know their kids the best. You know, they know them the best, and they have those gut reactions and gut just knowing that, okay, my child is more in there. But the professionals who are the experts are telling me this, this and this. So I'm just going to have to accept it when they say that. And they sit there and they go, I've always known they. Every single time, they will give me a very specific example of that moment that they knew. And some of them are like, I walked into the kitchen and there were words on, like, the magnet letters on our fridge that I knew that they watched on a TV show. And then I walked in and there's words there or like ABC puzzles. And it's not just lining them up, it's actual words. And they come in and they're doing this. So it's like things like that where it's like, wait, what? And then the parents are like, well, no, can't be because of this or because of this, or it was just by chance, you know, so that's. That's the first thing. And then the second thing is, oh, my gosh, they've always been listening. They've always known.
What do they hear? What? You know, like, it's just. It's. Everything just starts to flood in, right? And the guilt of some of the parents where, you know, they may have said something. They may have. You know, it's just this, like roller coaster of emotions in those first few sessions when they realize that they can do this.
[00:35:36] Speaker A: How much is this known and being utilized, you know, percentage wise, you know, Bobby Kennedy talking autism so much in these rates, just through the roof and no slowing down. I think we're 1 in 29 or 1 in 31, something like that. Kids are 1% of kids with the autism diagnosis getting exposed to this or know about it, 5%, 50%.
I mean, you've been at this 11 years. Spellers has been out for almost five years now.
I mean, we're well down the road of this being a known thing.
How much are the Speech Therapy association still full court press of pushback? Are they cracking it all, opening their mind at all? Are they resistant so much that most autistic families don't know about this?
[00:36:32] Speaker B: I think that, you know, it's more that the autistic families don't know about this. However, it's a close second where I don't think that my. My child can do it right.
Because. And then there's reasons, you know, typically, well, how do they spell these words or how do they do this? Because they really technically only learned up to a first grade level. And so this is another, you know, reason why too, that when I started my website and then I also started a YouTube channel to get, literally get the information out to as many people as possible saying, your son or daughter has a motor planning disability. So even if you ask them to go point to certain letters and they can't do it reliably, that doesn't mean that they don't know them. It's that their motor failed. You know, kind of like when I'm texting and I misspell a word, nobody thinks that I am now all of a sudden cognitively delayed. And why can't you spell that word? It was a misspoke. It was a motor issue.
And so I think that that those two things, and that's why we're on a mission to, you know, really extend the word and get it out there so that parents can really start to understand why and how their child can do this. Can do it.
[00:38:00] Speaker A: Yep.
Well, I mean, I know it would be a total change of the paradigm for speech therapists, but why not just, like, let's incorporate this, let's just make it a part of a speech therapist training or part of our board certification. Let's implement, bring this into all the schools and therefore we can get our Reimbursement through all the government reimbursement programs or whatever.
Because usually it boils down to money. It seems like territorial because I'm going to lose, I'm going to lose credibility or lose money somehow. That sounds horrible, but that's our track record as human beings. It seems like.
Or pride. I don't want to admit I was wrong, but if, if we kind of deal with all that by just say let's. I mean, it's pretty hard to argue when a kid like what I saw on stage and what you can see in that documentary, I mean to say the parent is somehow manipulating that board and making this. No, that's irrational.
[00:39:04] Speaker B: What would the parent gain from that? Right. Like that's, that's part of it. Like what, what would a parent gain from doing that? Like, that's, that's one of the questions that we ask, ask the, the ones who are like trying to just no, no, no. And I'm like, it's the parent. The parent wants their child to be able to communicate. And I think, Ben, one of the other things that, you know, my families that come in, they, they start to understand this. But education systems, the way that they're supporting those that need additional support. I mean, my clients come in and the parents like, well, they have a assistant and, and you know, support person at school today. And this is like the fourth one in three months.
The challenge with having spelling in school is that when you're starting out and you're getting the training to be able to do this with an individual, a student or even your, your son or daughter, it isn't just something you can sit down and we can start to spell and they showing their knowledge. I mean, goodness, that would be awesome if that's what it was. But again, going back to the golf analogy, you don't go to the PGA Tour in two weeks, not even six months. Right. Like, not even so to. For a parent to be able to do this. That's why we're for speller's method. It's a parent driven program because number one, I want that parent to be the communication partner and then we can have as many. But it just takes a lot of training with that.
[00:40:46] Speaker A: Yeah.
So, you know, trying to go to every speech therapy association or licensing board in every state and approaching it more from a governmental licensing agency type would have definite challenges beyond just breaking the old mindsets, Right?
[00:41:04] Speaker B: Yes.
[00:41:06] Speaker A: So if you were in charge, if Bobby Kennedy was calling you to say, what would be the best way to get this number one Just get the word out. And number two, the parents that heard the word and wanted to offer this to their kiddo, what would you come up with as a plan to roll this out nationwide?
[00:41:26] Speaker B: Yeah.
[00:41:26] Speaker A: Or statewide or city. Wider, community wide. We can go down the community level.
[00:41:30] Speaker B: Or we could go nationwide. That, that I like. Nationwide.
[00:41:33] Speaker A: Yeah.
Kids, I mean, they're in there, they have all this. What I saw on that stage, that's what I immediately thought. My wife and I walked out of there almost in tears and thought, those are three amazing. I call them kids. They, they're probably in their 20s. I would say the one wanted to start the first fraternity. Yes.
Yeah, Kaden. Awesome. And we have a cave. But anyways, that's my first thought walking out of there. I looked at Jamie and said, how many just like those three are just here in Austin, Texas, much less all of Central Texas, Texas estate, of course, the whole country that are just in there right now today on a Saturday morning at their house, so frustrated. They have all this in there, all these thoughts, all this talent, all this intelligence and knowledge and gifting from God and they can't get it out.
[00:42:30] Speaker B: Yeah, yeah.
[00:42:32] Speaker A: Ah. So yeah, I'm with you. Nationwide. Let's get this thing done. But how would you. Yeah. What would your approach be?
[00:42:39] Speaker B: So for perspective, there's 30. We calculate approximately 31 million non speakers in the world. Right. So. So just kind of like thinking about that.
You know, it's Bobby Kennedy, he knows spelling, he knows about it. He knows a couple of spellers personally. So I know that, you know, if, if I'm sure he would be in support of it. Right, I know that he would be in support of it.
And so it would be like even, even thinking about how to get it into. Like you said, Ben, I think you mentioned getting into schools, professional school, like OT master's programs or speech therapy or an actual program in and of itself. Because spellers method does do a training. Right. For providers.
This is. And we say to anybody who takes our training, this is a master's level curriculum.
So it is much more. And everybody that's a communication partner or a provider will attest to this. It is much more than just sitting and holding a board in front of an individual.
It's relationship based. You have to develop a trusting relationship. Holding a board for an individual to communicate is a privilege for that person. And if anybody thinks otherwise, and it's just now, oh, I'm. It's all about me. Wrong person to do this.
So being extremely respectful, being, you know, all those Things. So I would love if it was actually a separate program at a college university level. Because when I think back to my OT degree, and essentially it was one full year of internship on top of all of the clinical work, right. And then even my PhD, same thing. Like, I did a ton of research, but there was clinical parts to it and then an internship part of it. And that has to be there. So I see it more as like getting this to, you know, colleges where this could actually be a program because then you're going to be able to have those individuals who can dedicate their clinic, their practice to doing this versus me, myself as an ot, I choose to do this. But as an ot, I could do a lot of other things. Things too, right. In my training.
And so I do know there's some other professionals that they have their clinic and they do this kind of as an add on.
On top of it. So yeah, that's what I would love that. I would love that.
[00:45:25] Speaker A: Okay, y' all heard it here. Anyone here locally that's affiliated with Texas Tech, I'll just go right ahead and say Texas Tech Health Science Center. Let's start in.
[00:45:35] Speaker B: It is.
[00:45:36] Speaker A: We could be the ground zero capital for this.
You know, it's unfortunate. I think this, the whole vaccine autism talk has been so polarizing, so controversial.
Cdc, like I mentioned, just changing the website to say no, we. There's no evidence to make that statement that they don't cause autism.
The vax versus unvaxed studies that continue to come out, including an inconvenience study. Dell Bigtree from last week. We talked about just so much there. If we could just. And this is probably more to my colleagues that might be listening, just humble ourselves. And the best thing this country could do for itself, in my opinion, is learn to say, I'm sorry, I got it wrong. Dana has said it multiple times here. We said things out of thinking we were saying the right thing. And it turns out we were wrong.
And we need to get better admitting that and saying that. And you know, the American people are very forgiving, just like Dana said with these kiddos, so forgiving of their parents. The parents just didn't know and the doctors didn't know. And if we can just get back to that place of humbleness of. And then we can move forward.
I mean, I think this vaccine schedule is going to continue to be altered because it's clear it's an indictment immune system dysregulating hyper vaccination schedule.
And we've got to be able to have that Conversation, do something about that. But then on this end, we got to be able to confess and admit, yeah, we got it wrong and we're so sorry. But look, here's some things we can do to help you. I mean, this is just normal human compassion.
So let's let our pride die a little bit and, and let's do something beneficial for these kids. Sorry, little tangent there. But on that note, and I don't want to go somewhere you don't want to go necessarily, but do these parents talk about that? I mean, they're so focused probably on learning to spell and it's such a huge challenge and like you said, total dedication that. But does it ever go into, well, when did your kid become non verbal and the vaccine question, that whole thing?
[00:47:47] Speaker B: Yeah, you know, I, I don't sit on or stand on a soapbox and, and preach anything, but a lot of the parents get that, get and know where I stand on things and you know, just through what I've talked about before or my YouTube channel and where I stand on it. But yeah, I mean, it will come up, it will come up often.
And I think that part of my fire behind, you know, my advocacy for these individuals, for spelling, but then also for just overall health, like children's chronic health just in and of itself or their health, but chronic disease and how that has just been like, just gone through the roof. These last. Including autism. I think that parents will start talking about it and they'll be like, kind of feeling me out and just kind of where I'm at. But then certainly say, yeah, it's my child is not the same child that I had when I brought them home from the hospital.
And that is where I start to get like, okay, yes, I am here for you. I want to support you. I believe you. Like, I believe you. Right? That's, that's something that they have. They've been gaslit for so long and saying, nope, nope, nope, that's, that's not. And so this decision from the cdc, I mean, it's a small step, but huge step forward because essentially, you know, when I think about science, just in general, it's. It's crazy that they just concluded that the absence of evidence means that there's evidence of absence. Like that's what they said because they haven't seen anything. Well then, nope, closed shut. No autism. No relation between autism and vaccines.
And that in and of itself kind of makes me go, what? Like, you're not even. And then the divide with parents, like the judgment between parents, like, you said even at the beginning where it's just like this divide.
Why, why, why can't one parent make a decision that's best for their family? And it's okay, right? Like why does it have to be. And I mean that's a whole other podcast.
But I just, I, I think that this overall is just, even if it's legitimizing for parents who have been told that they're wrong. And I think I see it every day. I see the effects of it and the pain, the medical issues, the dysregulation, the self injury because of brain inflammation.
And, and it's interesting Ben, because I get this question quite a bit from more of the families that have done various biomedical interventions and, and they'll say, do you, do you see spelling in their terms like work better for those who have done more of a biomedical approach and really healed medically?
And you know, my anecdotal scientific studies are Yes, I do, I do. And so there's something that has happened to their body and through biomedical intervention has helped to calm. Right. Whether it's a gut issue, you know, gut brain connect, brain inflammation, mitochondrial issue which are so common. And that is something else that's not, you know, talked about or discussed, just health in general as far as nutrition, diet, exercise, like all those things.
And it's like, man, when you kind of get back to those basics, which by the way, saying that to an autism parent who is up at 2am because their child's punched holes in the walls, it's not going to go over well. Like just do this right? Like it's, it's a process, it's a time meaning that you know, parents need support, parents need the time, parents need to feel that they've been heard. And so I think that this whole thing that's come out is very supportive for them. But then in the long run, of course for our kids. And that to me is, is the most important thing.
[00:52:41] Speaker A: Yeah, I agree 100%.
Well, we've got a few minutes, five, six minutes left. I'm just trying to think of the audience that's hearing this. Number one, if they know a family with a child who's a non speaker and want to share this with them and then take next steps. I could see some listeners that may want to get trained in this and just instead of being an ot, I want to be a speller technician or whatever. Speller trained communication assistant or even policymakers, government, university related folks.
But just next steps. Yeah, maybe let's start with the kiddos Families who might want to be interested, give them a little bit of an idea of next step to learn more. But even next, what would it look like? I know time and dedication and practice, practice, practice, like you said over and over, but give them a little bit of an idea. And I know probably every kid's different, but are we talking they need to commit an hour a day, two hours a day, five days a week, three days a week, seven days a week. And after three months, six months of that dedication I can expect. And again, I know every kid's different, every case is unique, so maybe you can't even speak to that, but a ballpark idea of next steps for a family to commit to this.
[00:54:01] Speaker B: Yeah, for families.
We, we actually have a communication partner training course online through our website, spellers.com you can, you can find more information out there. And we started that communication partner course so that parents could get a jump start. And what I love about that is that you have, it's an eight week course. You have eight live seminars that you do once a week. And this is just with you, this isn't with your child. And then what you do is you submit videos of you and your child spelling and you work with a mentor. So it's again one of our senior level providers who've been trained with us. And you get feedback and you know, really to kind of encourage and help you to understand the steps involved. And then from there we highly recommend that you see a provider every now and then. This is probably the cheapest intervention that parents do. I mean, I've had some parents calculate like the years and hours, hours of ABA or speech therapy or ot. And you know, obviously they're OT speech and, and they're beneficial. I don't wanna. But with respect to communication, this is probably the cheapest. So working alongside a provider, but then at the same time that practice, like you said. So you know, I have families that come to see me, I do intensives. They see me for a couple of days, then they go off, they practice, they might submit a couple videos when they're, something's tricky and then they come back maybe six months, you know, and we continue on.
So yeah, we, we want to support the parent. We don't want it to give up. We don't want that because we know that that's the child's voice.
[00:55:54] Speaker A: Well, what about anyone more on the decision making, policy making side or a university side?
Would they just reach out to you, get in touch with you, get on your website?
[00:56:06] Speaker B: Absolutely. You're welcome to Email me. Anyone can email me. My email is dana spellers.com super easy.
So any, they can definitely email me directly. However, one of the recommendations that I know that we would love for them to do is actually go through our provider training. So we have a parent or communication partner training and we have a full on provider training that we would want them to go through just so they would experience it and then we would decide, you know, okay, so policymaker, this is what we need to do. College, university. How can we now turn this into a program?
[00:56:46] Speaker A: Yeah, awesome.
Well, Dana, I can't say enough how amazing this is. What you're doing, the work you're doing, the dedication, doing something alternative or outside the mainstream, especially when there's a little pushback out there and controversy with it. But staying focused on what's best for these kids.
It's awesome. I love to highlight folks like yourself. There's so much kind of bad news out in the world and the people need to see and hear from those who are doing incredible work like you. So thank you.
[00:57:19] Speaker B: Thank you so much, Ben.
It's been great. It's been, it's been so great to be able to share. So I appreciate it.
[00:57:26] Speaker A: You're welcome. If there's anything we can do to help you. Sure, let us know. And everybody, again, the websites are Spellers with an S spellers.com and Dr.
D R Dr. DanA-A-N A johnson.com. you can go to each of those websites and I'm sure your YouTube yachts right there, YouTube link there on Dr. Danajohnson.com you'll check that out. And then Spellers, the documentary. And we've referenced JB Hanley and Jamie, which is JB's son. And JB's been on the podcast multiple times. You can go back and listen to and I would encourage you all to go listen to those interviews. In particular the late, the last one I did a few months ago and that's at veritas wellness member.com where all our shows are archived, including this one.
Y' all spread this word far and wide. You heard Dana say that's the main thing we need just need to get the word out to these families. So y' all share this with your friends, families and loved ones. And we will be back next week with another great show. Thank you all for joining us today. Thanks again, Dana, for all you're doing for being with us today.
[00:58:31] Speaker B: Thank you.
[00:58:33] Speaker A: Okay, bye. Bye everybody.
