Understanding Whole Body Apraxia To Develop Intentional Motor Skills & Health with Dr. Johnson

Dr. Dana Johnson, PhD, MS, OTR/L, is the Founder of Spellers Center Tampa and Spellers Center Atlanta, the Founder of Invictus Academy Tampa Bay, and the co-founder of the Spellers Method™. She holds a Master's degree in Occupational Therapy and a Ph.D. in Child and Adolescent Mental Health and Development. Dr. Johnson is a producer of the award-winning documentary SPELLERS, executive producer of UNDERESTIMATED: The Heroic Rise of Nonspeaking Spellers, and co-author of The Spellers Guidebook: Practical Advice for Parents and Students. She also serves on the Medical Science and Advisory Board for Documenting Hope. With over 20 years of experience, Dr. Johnson specializes in helping individuals with autism, apraxia, and other neurodevelopmental disabilities develop intentional motor skills and improve their overall health. Her work is rooted in a deep belief that these individuals are capable, intelligent, and deserving of the support needed to unlock their full potential.

@drdanajohnson

Transcript

SPEAKER_00 0:09

Hi, this is Pamela with the Hello Health Encourage and Wellness Podcast. And today I have Dr. Dana Johnson, who is the founder of Spellers Center Tampa and Spellers Center Atlanta, and also has her master's degree in occupational therapy, PhD in child and adolescent mental health and development. And there's so much more, and we're really excited to connect today. Doctor, thank you so much for being here.

SPEAKER_02 0:32

Absolutely. Thank you. I'm excited to have a chat with you today.

SPEAKER_00 0:36

So tell us where a lot of your focus is right now. Obviously, I am very much a fan of documenting hope and love all the work that is done around neurodevelopmental issues, autism, autoimmune encephalitis, and certainly a lot of things that kind of in between. Tell us a little bit about you and where where you're spending your focus.

SPEAKER_02 0:59

Yeah, thanks.

SPEAKER_01 1:00

So I am an occupational therapist. So I um graduated, let's see, it's got to be almost, well, it's 21 years ago, which is crazy to me. And what I do now is very different from what I originally learned in school, specifically with the pediatric population and specifically in the world of autism. So I knew from day one that I wanted to work in pediatrics and in autism. And so that's what I, you know, just dove into in school to learn a lot more about it. And then over the years, I was introduced to individuals who were non-speaking. You could describe them as, you know, low-functioning or profoundly autistic. And just I really loved working with them and the more complexities that they had. Um, it was just, I, you know, people ask me, like, what got you in this? You don't have a child on the spectrum. I actually don't even have children. Um, and I just loved working with them because I just truly believed that there was much more than what other professionals were telling me. And so it was when I read um the book called Edo in Autism Land. And Eto is a non-speaker and he types and spells to communicate. And I was like, okay, this is interesting, especially his chapter on, well, OT did nothing for me. And I was like, wait, what? Like, okay, the the people that I'm working with are calling me out. That's really how I felt. So I dove a little bit more into it and he was like, you know, OT is fun. Don't get me wrong. Who doesn't like a ball pit? Who doesn't like a scooter board? Who doesn't like all the things, the swings, all of the sensory aspect? Because, you know, individuals with autism do have difficulties with sensory processing. So I kept reading because I was like, okay, well, that's what I'm doing. So that's fun. But he said, like, it didn't really do anything for him. What did that mean? And what he actually meant was is that his issue or challenge was that he had ideas and thoughts, but he couldn't initiate to put them into action. And I'm like, oh, okay, I didn't know what this was. And he he called it apraxia or whole body apraxia. And there's this disconnect between the brain and the body. And um, it was at that point where I literally transformed what I did because he said, you know, it wasn't until my mom hired a trainer, like a physical trainer, um, fitness, where that person gave me weights. They had me on a treadmill, they really um pushed my body to the point of like exhaustion, but I loved it. Like he goes, I could feel my body because of the proprioception, which is the weight, right? That we have. When you're holding something, your body's much more aware of it than when you're holding something that's lighter, for example. And so he said, when I'm doing functional movements with weight, that's really helping me build the connections so that I can be more intentional. And so I'm thinking about all of this, and I'm like, okay, well, this makes sense to me. I love fitness, I love going to the gym. And I could see now what he meant by this disconnect. And that's what we call whole body apraxia is literally that there's a disconnect between the brain and the body, meaning that the individual has an idea or a thought, but they can't put that into action even though they understand what's being asked. So it's hard, I think, now for a lot of my families to understand that second part because they don't think that their child can understand, because that's what a lot of professionals have told them in the past. And in fact, that's what all of the assessments tell them, that they're functioning cognitively at an 18-month-old level, et cetera. Right. So I was like, okay, well, this is again making sense to me. Nothing is crazy here. Um, and then I'm thinking, okay, well, any kind of assessment that I do, and any kind of educational assessment or psychological assessment or IQ test or any of that requires this motor connection with the brain. So, like, are you telling me that none of these are valid? And I'll say to families to this day, yeah, none of those are valid. It gives a measure, but it has nothing to do with their intelligence. It's giving a measure of how their body can intentionally move, not how smart they are or what their IQ score is. And so it's been this kind of whirlwind transformation because my work with spellers and spellers method, you know, that is a form of alternative communication where we teach motor skills so that the individuals can point to spell words and then sentences in order to communicate, has really pushed me even further to go. I need to tell the world essentially about whole body apraxia and what that means, because this could make a huge difference in the mindsets of not only parents, but doctors, physicians, pediatricians, OTs. Like I was not taught anything I know right now in school. I was taught about praxis. I was taught about how do we build motor skills, how do we help individuals with motor skill differences, but nothing about specific to those with neuromotor disabilities, what is actually happening. So I I just kind of let everything out at right now, but that's really what my I'm up to at this point, and really what I want to help support.

SPEAKER_00 6:54

So, and and I love that. When when you are working with people in this, do you find that it's a certain age range that you find is is easier to work with than others? Do you find um certain types of activities, certain types of um ways of of interaction? Um, tell us a little bit about like if let's say I'm a caregiver or I'm in a school setting, how would I start to understand this and start to communicate better?

SPEAKER_01 7:23

Yeah. So I think that, you know, caregivers and you know, educators, it's interesting because when I'm talking to parents about this, uh I have to say that more often than not, parents will be like, yeah, because when he was like two, he was like putting the alphabet magnets on the fridge and like spelling and like, and then they'll describe something that clearly takes a lot of planning and like organizing and cognition. And so deep down, parents know, right? They know that their child is smarter and there's just something that's missing. And so we talk about whole body apraxia and this disconnect and how what we might see them do or not do, because it can be both, they can be doing something they don't want to do, or they can be not doing something they do want to do. And that's equally frustrating. So I think the first thing is I'll say to parents, your mindset. And same with the same thing across the board with educators too, or I mean any professional really working or expert in this population, is the mindset has to be these individuals do understand what I'm saying. So I'm not going to communicate about them right in front of them unless they're part of the conversation, right? That's just respect, also. Um, and then I'm going to then speak to them age appropriately. So whether or not they're five or they're 55, doesn't matter. I'm still going to adjust, you know, how I speak. I'm not going to dumb it down. Um, and I think the other thing is is just, you know, it's hard to do. And this is not something that typically happens overnight, but it is the mindset of they want to do something that their bodies can't do, and they do understand me, and they want to continue to learn with that mindset, and then in addition, do what we talk about as motor coaching. So here's an example. You are going to go learn how to play tennis. Okay. So you hire a tennis pro, you know, never touched a racket before. So they're going through the basics, right? And they're showing you how to stand. They might even physically move your body in a certain way. You're going through the process of learning a new motor skill. So I apply that whole thing to, I'm going to coach your body to put on your shoes, to pick up your backpack. Because when I just say, go pick up your backpack, and your body still stays in the chair, typically, typically, my assumption would be they don't want to, they don't understand. Um, you know, like and it it never is, they can't initiate their body. They can't get there. It's a motor issue. Now, going back to the tennis example, if you totally miss the ball, you know, throw the racket for whatever reason on your first time, the coach or or pro, tennis pro isn't gonna go back and go, here's the racket, here's the ball, right? No, they're gonna go, oh, your hand-eye coordination is off. That's a motor issue, right? They're not gonna dumb things down. They're immediately presuming that it's a motor issue, not a cognitive issue. Yet that's what we do with individuals who are non-speaking or what seems like they're less intelligent, right? So um I talk about that and and just to kind of get the thought process going, because there's always a million questions that come. But when I say if we can learn how to coach the motor, and that's breaking down the task into smaller steps, not dumbing it down. So when I like think about the backpack example, it could be, okay, let's get your eyes on the backpack. Now reach for the backpack, right? Like grab that backpack right here. Now lift that backpack, ready, turn your up, get your eyes on the door, let's keep walking, right? Like we're slowly coaching. And often what that does is is like you see the success. So number one, you're like, holy cow, like they're actually doing this. I'm coaching them. And then two, you're building, you're actually building connections between the brain and the body, because just like us, you're taking tennis, you're not gonna typically practice just once a week. You're gonna go out and practice as much as possible, often the same movements over and over again, to then establish that motor plan that becomes automatic, right? So it's it's the same kind of thing, but that's where I would start. I always start about mindset, right? Just rent the belief that my child can understand. Just rent it, right? Like you don't have to all in, just kind of think about that. And then number two, break the task down into steps and coach them that way. And and you know, really believe that they want to do this because I haven't had one of my clients tell me I don't want to have more control over my body. Forget it. Nope, don't want to do it.

SPEAKER_00 12:30

Well, and it's gotta be it's gotta be incredibly frustrating for some parents to speak to people and say, can you please just give this the benefit of the doubt and try it? And then it also takes an incredible amount of patience and communication on the other side. Do you find um with the kids with this, do you find that they often uh um communicate better with you as a coach than they would a parent who they see all the time? Um, or do you feel like you teach the parents over time and then the kids see them trying and then they come together? I'm assuming there's a little bit of coaching on both sides too.

SPEAKER_01 13:10

Yeah, absolutely. Um I I think it I think it's both. So in my practice, my goal is to coach parents because I'm with them for a limited amount of time, right? So I initially need to learn what the individual sensory motor profile is. So, I mean, we're all individual that way in terms of how we interact and move within our environment. So, part of what I do is I look and assess that, but then I'm also really picking up on how are the parents responding, how is their child responding to them, what are those dynamics, you know, because that's going to then help me to be able to better coach the parents so that they can practice and then take this home. So initially, because I mean, technically, when you that's why you hire a tennis pro, is because they're the expert. So you're gonna look a lot better with them than if, you know, you and somebody else brand new is gonna go out to play tennis. So we have to kind of get over that hump because if you think about it, like parents are also learning a new motor plan, right? They haven't done this before. And not only is it a new way of kind of coaching and talking to their child, it's also having to kind of adopt that belief that they do understand, even though their body isn't responding on demand, right? But we have to go back to what is that definition of whole body apraxia? And that is is that they understand what the task that you're asking them to do is, but they can't get their body to do it. So the hardest thing, and this is what makes, well, there's two really challenging things about apraxia for us as you know, supporters of the individual and the individual themselves. But number one is that apraxia is consistently inconsistent. So all the time I'll have parents say, Yeah, but he did it yesterday. So I think he just doesn't want to do it today, or he just did it two seconds ago. So why is he not, or he'll do it on his own, but when I ask him, right? So you can kind of see where these beliefs come in. And I understand it, you know, from a parent, a teacher, or whatever. I completely understand where the beliefs come from because we're taught to go, well, this is what the body's doing. So that must be legit. And we don't think about it as, well, there's this motor brain-body connection or difficulty disconnect that's happening. So that's the the one of the most challenging things. The other thing is that initiation, so just getting the body to move, is the most difficult thing for an individual with aprexia. So going back to the example of, okay, we got to get to school, go get in the car, and you're still sitting on the chair and he's not moving, you know, we start to get flooded with our beliefs about what we're observing. But in fact, it could be he just can't initiate the movement. So if I can help him just to initiate, gosh, look, you just totally did it. You know, like so it's these kinds of little things that I talk to parents about, and often it's like this light bulb, you know, it's like, okay, so what she's talking about, I see. So maybe what she's talking about does apply to my child. So that's part of that transformation.

SPEAKER_00 16:26

And then do you find too that there's multiple types of communication that works in this scenario, or is it always auditory, or do you find that if it's if it's like pictures, that sometimes that helps, or you know, if it's written or typed, or what do you kind of find that way too?

SPEAKER_01 16:42

Yeah, no, that's a great question. I think that traditionally we have always been told that individuals, especially with autism, need pictures, need a visual schedule, their visual, visual, visual. That's not my experience, actually. And I'm not saying that visual support is not supportive, it absolutely is. But I think because when we just use auditory only and then they don't respond, like remember, we always have to now think about it through the whole body apraxia lens. Because, you know, if I said something to the individual, like just the backpack, right? And they don't move, then it's easy to think, well, they don't know what a backpack is. So let's show them the backpack picture, point to it, and then point to the backpack. But again, that's also not presuming confidence, right? Especially if the individual is like 25, right? So it's that kind of thing where, okay, but he's never, we've never shown him what a backpack. I get these, I get all these questions. I've never shown a backpack. He probably doesn't know what it is. What I do know from the individuals that I work with who have told me specifically is that they take in things that we are oblivious to. And my conclusion, this is not scientific, but I will say that is because we're terrible listeners. We're horrible. We're trying to like formulate our response before the other person is talking. We're thinking our brains are in all different directions, where these individuals just see the world very differently and take in so much that we have no idea that they're taking in. And so they do actually learn so much in their in their daily life. And it could be where they're in a classroom at school, special ed classroom, doing one, two, three, A, B, C, you know, triangle, circle, square over and over again, but yet they happen to be in a classroom that's next door to a you know math class. And it's like they can hear and take in information that's around them that we don't even know. So when I'm working with families and I do do math, you know, questions if I'm working on spelling or I'm working on communication, they're like, well, I've never taught them how to add. And I'm like, well, picked it up somewhere, right? Like it's just that kind of thing. So, in terms of prompting, so I use verbal prompts, I use, you know, um visual. So I'll point to it. I really try my best not to do any kind of physical prompts, right? The hand over hand for two reasons. Number one, I would not want somebody just to grab my hand and do something without me asking. So respect, number one. If I do do it, I will say, you know, I'm just going to do this. So, you know, let them know. But number two, when we're learning new movements, we have to actively participate in the action for it to make the connections. So if I'm constantly doing hand over hand, like to write a name, you know, that's traditional, the hand over hand writing his name or letters, right? He's not actually integrating that motor plan. It's all passive. We need to have active participation to build the motor plan. So I use a variety of prompts and then I'm fading those back. So visual, auditory, um, maybe some tactile, if they're okay with tactile input, modeling is another one. Um, so that's that's the type of support that I'm giving them as I'm coaching. I rarely actually do not use pictures. I've not used pictures since my whole like paradigm shift at that point because I know they understand. And it's the body that's the issue. It's not that they can't get the backpack because they don't know what a backpack is.

SPEAKER_00 20:30

Well, and I I've seen the same thing with one of my kids with ADD. You know, they kept telling me that he needs pictures on his bathroom to he he knew what to do. Yeah, he didn't need a picture to remind him. Um it's just kind of like slowing down the brain and somehow.

SPEAKER_01 20:47

That's exactly for him, it's different. He's got like 20 tabs open, right, in his brain. So it's like trying to organize his is more of the organization piece of it to get there. Yeah.

SPEAKER_00 20:57

So if so back to the example of if the hardest thing is to get out of a seated position to get to the background.

SPEAKER_01 21:06

The initiation of any movement is the hardest thing. So it's not just sitting, but yeah.

SPEAKER_00 21:11

Right. So how do you kind of help them? Is it kind of like talking through, like, okay, we're gonna lean forward now, or you know, kind of how are you kind of prompting that initial.

SPEAKER_01 21:23

Yeah. And and it is, it's breaking, it's breaking it down. So for example, if it is like, okay, let's get out of the chair, right? It's okay, what I have to think it through. So it's like, what do I do first? And this is what I encourage parents to do all the time. And I typically say, so it can get be overwhelming, right? Because if you think about our movements, it's a series of starting, stopping, starting, stopping, starting, stopping, right? So you're like get overwhelmed very quickly with, okay, well, where do I start? And I typically say, like, let's think about the most difficult place or thing, right, that they are trying to do. And parents will say, well, often he gets stuck. The chair. So that's why this example comes up a lot. So I think about it, and it's like the first movement that I'm going to make if I have to get out of my chair is to shift my body weight forward. So like what you said, bring your shoulders forward and then push your feet into the ground, keep pushing, keep pushing, keep pushing, and then bring your hips up, right? So again, often, even just this simple movement, and I'm not touching, but like pulling and all gesture. So bring your bring your uh shoulders forward, keep coming, keep coming, keep coming. Um, that often is extremely helpful. Getting the eyes to get to the location. Now, just a quick aside: vision issues are a very big deal for individuals with neuromotor disabilities. Um, way more individuals have vision issues, and it's not necessarily acuity, which is can we see clearly? Most of them can see 2020 or better. It's how the brain is processing the incoming visual information. And so getting their eyes to the door or to, you know, the fridge or whatever, that is a very difficult task to do. Um, it's not obvious, but it is. And so if you think about for us, if we can't get our eyes to the door handle, we're gonna be less efficient to open the door, right? We don't think about this because it's automatic. So I'm trying to help them initiate. Now, I tend to sound and parents will say this to me, like I was, you know, parents will say, I was told that I just say it once and then I have to wait. Because if I say it too many times, that's gonna be too much to process. And I'll say, okay, well, I haven't had one of my clients say that. In fact, what I have them say is, if you stop, my body is not going to move. So when you coach me in that continuation of coaching, that helps me to get my body to move, right? So now I'll say, you don't have to yell, right? You can whisper so it's not as obnoxious, but just don't stop because that can actually escalate into anxiety and stress because they're trying to do it, but you they need a little bit more help at first. So it is, it's just that initiation, coaching them, bring your shoulders forward, could be get your eyes on the or reach for it, keep reaching, keep reaching, go, go, go, go. Like you end up really like being a coach. Like, what would your coach say that's what you want to be like? Um, and and and just your your thinking through all of that.

SPEAKER_00 24:30

Right. Now, any thoughts or things for for people that are listening? Where do they go next? I mean, obviously you've got, you know, your your published work, um, your practice. Um, is there is there a certain group of people that kind of act and do similar things together that you're collaborating with, you know, across the US? Or how how impactful can people really um get here with with you and with others?

SPEAKER_01 25:01

Yeah, and that's part of you know what I'm doing and trying to get it out there. I'm trying to get courses available for I'm I'm in the process of doing all of that for other professionals and for parents because, like I said at the beginning, I mean, I'm an OT. I was not taught this information when I was in school. So it's, you know, we have interns that are coming in and they're just like, what is this? Right? Where it's great because now you can go out into the world and you know, use it. Um it's I have OTs that contact me all the time for, you know, can you help me understand this? Because I work with this population. And I love that because now I'm helping a lot of people, right? Um, parents will often, if your child is older, I traditionally suggest like 15 and up, maybe even 12 and up, hiring a trainer, like a personal trainer versus going to OT, unless the OT is understands whole body apraxia, understands presuming competence. And, you know, when I'm doing an assessment for whole body apraxia, I'm looking at three areas sensory motor profile, vision, um, because I work very closely with developmental optometrists. Um, I'm also looking at reflex integration, so primitive reflexes. And then I also do an overview of what is their diet, medical. I go pretty deep because, you know, as a we all know, just how you are metabolically is going to affect your motor output. It's going to affect whole body apraxia. And if you're unhealthy metabolically, I have lots of clients that come in with mitochondrial dysfunction, right? And it's like, okay, we need to get you to a certain spot while we're working on this intentional motor piece. So I really do a full assessment that way. Um, but it is something that just needs, it's just not out there right now. And so if you can educate yourself as a parent, and then, okay, my child's 12, I'm gonna hire a trainer, I'm gonna educate them because they have the understanding and education of moving through functional movements using weight, which is helping to build those patterns. For my younger clients who are little, like um, you know, four younger, but four, five, six, who, you know, have been diagnosed, I'm still saying go to an OT, go to PT, go to speech, really work on the intentional motor through fun games and play. When it becomes something where it's now focused on fine motor skills for an individual with autism or whole body apraxia, down syndrome, other neuromotor disabilities, and they're not really working on postural control, upper extremity strength, building the connections. Now it's not really doing what it needs to do because they need that whole body support in order for that fine motor skill to really be successful. And I find that most OTs continue, because that's how we were trained, to work on those fine motor skills at a certain age. And then, you know, these kids are just kind of floundering and parents are like, I don't see any success. Um, and this is why. So right.

SPEAKER_00 28:23

And how how do how do people find out more about you or about this type of work?

SPEAKER_01 28:29

Yeah. So I have lately been really trying to post more on Instagram, my social media, uh right now, Instagram and Facebook, which is Dr. Dana Johnson. That's my my Instagram handle. So there, and then I will be launching a YouTube channel in the next few months, which will have a ton of free content because again, it's just about getting it out there. Um, and that again is Dr. Dana Johnson on YouTube. So, but that's it's there's not really anything there at this point. So stay tuned for that. And then uh my website will be up down the road once I I just I want to get the free content out though first because that's what everybody's asking me for, and that's what I just want to get. So stay tuned for those things. But I do post a lot on um social media to help out. Great.

SPEAKER_00 29:14

Thank you so much, Doctor. Is there anything else that you want to share that I forgot to ask about or talk about?

SPEAKER_01 29:20

No, thank you so much. It's been such a wonderful conversation, and and thank you for helping me get this out there because it's just so important. I think will change the lives of of many. So thank you. Thank you.