Episode 228 — It’s A Brain/Body DISCONNECT
Guest: Dana Johnson • Date: October 31, 2024
Episode Overview
This week, on Autism Parenting Secrets, I spoke with Dr. Dana Johnson, founder of Spellers Center and Invictus Academy and a co-founder of the Spellers Method. With nearly 20 years of experience, Dr. Dana empowers nonspeaking individuals to find their voice through spelling and typing.
About Dana Johnson
Dr. Dana Johnson, PhD, MS, OTR/L, is the Founder of Spellers Center, Tampa; Founder of Invictus Academy, Tampa Bay; and co-founder of the Spellers MethodTM. Dr. Johnson has a Master’s degree in Occupational Therapy and a Ph.D in Child and Adolescent Mental Health and Development. She is a producer of the award-winning documentary SPELLERS, an executive producer of UNDERESTIMATED: The Heroic Rise of Nonspeaking Spellers, and co-author of The Spellers Guidebook: Practical Advice for Parents and Students. Dr. Johnson has worked with individuals with motor and sensory differences for almost 20 years and currently specializes in supporting nonspeaking, unreliably speaking, and minimally speaking individuals to utilize spelling and typing as a form of communication. Dr. Johnson started her career as an occupational therapist supporting children in the public school system, then moved to private practice working with individuals with autism, apraxia, and other sensory-motor differences.
You can learn more about her at www.spellers.com
You’ll Discover
What Exactly Is APRAXIA (3:42)
The Beliefs To Adopt First (9:23)
An Enhanced Version of OT (18:09)
The Impact of Vision (21:38)
The 4 Ways We Move (30:06)
Why You Must Presume Competence (32:47)
How To Coach The Body (37:56)
The Power of Belief And An Individualized Approach (42:17)
Referenced in This Episode
Autism Parenting SecretsEpisode 213,Presume Competence, Here’s Howwith Dawnmarie Gaivin
Ido in Autismland: Climbing Out of Autism’s Silent Prisonby Ido Kedar
Full Transcript
Dana Johnson | 00:00
No. You are a part of this because you need to learn how to coach your child in terms of getting their bodies and brains connected. And because this is life, right?
Like it's not just about, okay, we're going to do our individual workouts and we can talk a little bit about specifics and what I do, but intentional movement is everything we do. And it's all part of motor learning.
Cass Arcuri | 00:28
Want to truly be the best parent you can be and help your child thrive after their autism diagnosis? This podcast is for all in parents like you who know more is possible for your child.
Len Arcuri | 00:39
With each episode, we reveal a secret that empowers you to be the parent your child needs now, saving you time, energy, and money, and helping you focus on what truly matters most, your.
Cass Arcuri | 00:49
Child. I'm Cass. And I'm Len. Welcome to Autism Parenting Secrets.
Len Arcuri | 01:06
Hello and welcome to Autism Parenting Secrets. It's Len, and I'm excited to introduce to you Dr. Dana Johnson. She is a true pioneer in the world of communication for non-speaking individuals. Dr. Dana is the founder of Speller Center and Invictus Academy in the Tampa Bay area in Florida. He's co-founder of the Speller's Method with prior guest Dawn Marie Gavin, and you can catch episode 213 for that discussion. But with nearly 20 years of experience, Dr. Dana specializes in helping non-speaking, unreliably speaking, and minimally speaking individuals Find their voice through spelling and typing. She is the producer of the award-winning documentary Spellers, an executive producer of Underestimated, the heroic rise of non-speaking Spellers, and co-author of The Speller's Guidebook, Practical Advice for Parents and Students. Dr. Dana started out as an occupational therapist in public schools and has made a huge impact in private practice ever since. You can learn more about her amazing work at spellers.com. And the secret for this week is... It's a brain-body disconnect. Welcome, Dana.
Dana Johnson | 02:23
Thank you so much, Len. It's been so great to be here and to share with you about, yes, the brain-body disconnect. As you mentioned, I have a lot to do with spelling, and that is a lot of what I do during the day. However, I think I want to take this opportunity to talk a little bit more about just that the brain body disconnect and what that means and pull in my experience as an occupational therapist and bringing in the spelling piece, but more so talking about movement and specifically intentional movement and what that means.
So I'm excited to be here. Thank you.
Len Arcuri | 03:04
Great. Well, yes, I think it's a powerful concept and one that I didn't quite understand early on.
You know, I think a lot of people just feel like, okay, autism, it's a brain issue. That's the problem. But yes, the brain and the body, right? It's that interconnection. And so often our bodies don't function as they were meant to function for a lot of reasons. And, you know, we can probably talk at length about potential root causes of what's behind that. But if parents really understand this secret that there's this disconnect, the exciting news is there's a lot they can do to promote better connection, correct?
Dana Johnson | 03:40
Absolutely. And I think, you know, going way back to my OT school days, I actually was not taught about the brain-body disconnect. This wasn't something that I learned in school. I actually learned after I graduated. And of course, on a daily basis, I continue to learn from my clients. But the brain-body disconnect and what that means is actually apraxia.
So we use the term apraxia. We use whole body apraxia. In the OT world, you may have heard of dyspraxia. And what that is literally the inability to put your thoughts into action.
So every single day we have tons of ideas and thoughts, and we can easily move our body purposefully to then put our thought into action and complete what we need to do every day. Well, when there's a breakdown in that process, and that process is called praxis.
So when there's a breakdown in that process, that's when we start to see things Like what we see in a lot of my clients who are non-speaking or who have other diagnoses, not just autism, but other sensory motor diagnoses that prevent them from connecting their brain and their body. So that then looks like on the outside that they don't understand, they didn't hear you, or that they just don't want to do it. Right.
So it looks on the outside that they're like being you know, or he's lazy or she's lazy. Like I hear these kinds of things. But it's actually what we call whole body apraxia and that challenge to initiate. And in fact, initiation of movement is, and inhibiting movements, which I know lots of families that say to me, he's an eloper, right? And he will just go and he doesn't stop. And that's part of what whole body apraxia is. He or she may want to stop their body and understand when you're yelling stop. But they can't actually do it. And so it becomes very confusing for parents because they're We are trained to look at what the individual is doing in front of us, and then we make conclusions based on what we see. And so when I'm talking about how my clients have apraxia, and so they're not going to do things that they want to do, or they can't stop themselves from doing things they don't want to do, Parents are like, wait, what? And so that's usually one of the first discussions that we have is how then do we tell? Because I'm not going to sit here and say that everything, that every speller or every client or every non-speaker or individual with a motor disability is... It's just their disconnect.
Like I'm not going to say that because I have clients that are like, no, that was intentional. I just don't feel like doing it, mom. We can't forget that part of it. But one of the biggest things that I do and my mission, so to speak, is to really... Get the information about whole body apraxia out there to families of various kids with various diagnoses.
So it's not just autism down syndrome. I see a lot of spellers with various genetic, disabilities where there isn't a name. And you can see that it's like one day we're on it, right? We're on it.
And then the next day it's like, we've never done that task before. And it's just like, what is happening? And that's apraxia. It's consistently inconsistent and it's extremely frustrating for not only the family, the parent, but obviously frustrating for the individual.
So yeah, That really is, in essence, what I do every day is not only educate and support parents, but work directly one-on-one with parents our clients. And so what that looks like is really building intentional movement and building the connections, the neural connections between the brain and the body. And we really do that through what's called neuroplasticity.
So that's how we learn, actually. And that's really what I try and kind of bring it back to is that Here's an example of you learning to swing a golf club and hit a golf ball, right?
So here's the golf ball. Here's the club. Here's the tee. This is what you do. I'm teaching you all these things.
And then you get up to that golf ball and you totally miss it. And in fact, the golf club swing are all the way down the fairway. I'm not going to go to you now. They didn't understand. You know, here's the club, here's the ball, here's the tea.
Like, but that's what we do with our kids because we assume that they don't understand and we assume that they can't do or they don't want to do it. And so it's teaching. It's teaching them How to have better control of their bodies, but then it's and even more importantly, teaching their parents how to coach them to be able to build those pathways so that they do have more intentional movement.
So there's a summary of what.
Len Arcuri | 09:09
I do. That's phenomenal. And yet, as you're talking, there's so much. Particularly if we're focusing on the parent, right? And the parents want to do good for their Kids, right? They want to be useful. They want to be helpful. They want to be great guides. But a lot of what you just teed up centers on my favorite topic, which is the beliefs that a parent is holding at any given point in time. And it seems like right now what you're arguing for or making the case for is that some beliefs that parents may have about what's going on with their child may be 100% wrong or maybe just off and Unless you do something about that from the outset, it's hard for you to do anything well and consistently long enough for it to maybe have a positive impact.
So part of what you're saying is it's a little bit counterintuitive, which is. Parents don't believe what you're seeing because if you're looking for observation, visual observation that your child understands or is motivated or excited, how they're presenting may not in any way reflect what's really happening underneath. And I think that's the power of what's been happening over the last few years is that We're learning for the first time, you know, really getting to know these kids and these young, these adults and truly what they're conveying has nothing to do with what they honestly are taking in and what they understand.
Dana Johnson | 10:38
Yeah. Absolutely. And I think it is a mind shift. It's a big mind shift. But having said that, it's so interesting because when I'm working with families and they come to see me, It's more often than not that parents will say to me, I knew this. That they can understand.
Like I knew, and it just crushes me when I hear that because I'm They've been told up until maybe even me where, their child doesn't understand and by the professionals out there, right? So as a parent, It's like, okay, well, they're the professionals.
So I guess they know better than I do. And it's frustrating for me to hear that because I am a professional and I completely disagree. I would, the parents are the experts in their child. I'm just one that happens to know a lot about the brain and the body and how to help support the connections, and the sensory system, right? And how all of that plays together. But I'm not the expert in their child. And so I need parents. And that's where, you know, when I work with families, they're an integral part of the whole process. And, you know, kind of coming full circle is for me... I don't have an affected child. And actually, and this is where I used to get so hung up as a new OT, I would be like, please don't ask me if I have children. Please don't ask me if I have children, right? Because it's like, they're going to look at me like, well, how do you know you're working with kids and young adults and you don't even have... And so I don't have children. But What I did do, because when I don't know something, I go and I research it and I learn and teach myself. And so I did my dissertation on the lived experience of a parent of a child with autism. And because I thought that's probably the closest thing, you know, that I will get to in terms of really of understanding just a bit more because I'll never fully understand. But it's something that is so important. Important to me in terms of what I do with families.
So that's why, you know, I did that. And it's something that is I'm constantly thinking about, right? Because parents come in, they have, like you said, different sets of beliefs about themselves, about their child. And so it's my job to kind of figure out where are they in their journey and then how do I you know, work and empower them in a way that is going to support them individually, because I can't do the exact same thing that I do with every single parent. And so I've learned over the years, and that's why I went and I did more learning in terms of working and doing my PhD and more of the mental health area and the family systems, because I'm like, I need to know this. And so it's like really taking in each individual family and then tailoring the intervention directly, not only for the child. And that's what I used to do as an OT, right? It was Parents, here's my child, Dana. Do whatever you do as OT. I'm going to go catch up on some phone calls. Then I'll be back and I'll listen to you tell me what I'm supposed to do in between now and next week when I come back. And now it's like, no. You are a part of this because... You need to learn how to coach your child in terms of getting their bodies and brains connected. And because this is life, right?
Like it's not just about, Okay, we're going to do our individual workouts and we can talk a little bit about specifics and what I do, but. Intentional movement is everything we do. And it's all part of motor learning. And we all went through the same process as we were developing, you know, right from the beginning, you don't, you know, just stand up and walk. You have to process and work through everything. And so it's my, the biggest thing for me is building that relationship and then ensuring that families have the skills themselves, have the education in order to then move forward and really learn about their child and look at them in a different way to change those beliefs, because beliefs can be changed. Right. And so that's what I love to do. And that's what I get to do. I'm blessed to be able to do this every day.
Len Arcuri | 15:19
Well, I'm excited hearing you talk about it. And so much of it resonates, you know, the personalization, the involvement of a parent, because, hey, I was definitely that parent who was like, okay, I'm going to drop my kid off at OT. They'll tell me something afterwards. But otherwise, I was in that mode of, okay, that person's going to fix what needs to be fixed, and I don't need to necessarily be involved.
So that's why, yeah, I think I love personalization. How you describe how you work with parents. I love just your curiosity and how you got to the point that you are now, because unless someone really cares and is really curious about what's happening for these parents and for these kids, it's easy for what you're offering to miss the mark, right? And so that's why what you do now, and I wanna give you plenty of time to explain the nuances 'cause they matter, But for someone who right now has a child who's getting services and occupational therapies a part of it. I know occupational therapy is a broad term and a lot of it depends on the type or the personality of the provider, the person, the therapist.
Sometimes there's occupational therapists who are more sensory informed and that can be very powerful for kids who are sensory seekers. But what you're doing is, very different with a very different focus. And I mean, would you even call what you do a form of occupational therapy or something totally different?
Dana Johnson | 16:47
No, it definitely is. Because, you know, the true sense of what is OT and I, you know, get that question Sometimes I got it way early on when I first started my career.
Like even my family was like, what is OT? Like, I know what physical therapy is. That makes sense. But what is OT? And it's like, well, to give the skills for life. And it's like you said, well, that's pretty general. But I started out in pediatrics. And when I went to school, I knew that I wanted to work. It's interesting. I worked with this during my summer break with this child. He was a non-speaker with autism. And I knew right in that moment that was the population I wanted to really work with.
So any of my school projects that I had to do, assignments were really centered around autism and even adolescent, adult, because, you know, like you said, OT really does go across the whole lifespan. So I was able to kind of really... Gain a lot of knowledge in the area of autism. And at that time, it was any research article that was out there was really surrounded by cognitive disability, right?
So that's what I was believing. And if you look at the research, and the researchers, they were all psychologists and psychiatrists. And that's what they do. They study cognition, they don't understand motor and movement and the connection between the brain and the body. That's not their area of expertise.
So why would that even be considered? Right?
So from that point on, I really did come out of college just like what you were saying, focusing on sensory integration. And I was one of the sensory integration therapists where that was my gym. I had a full-on sensory gym because I was in private practice and with the swings and the scooter board and the ball pit and all those things, none of which are bad at all. Sensory integration is very important But it wasn't until I read the book, Edo in Autism Land, where it was, you know, Edo, who is a speller typer. He said, OT did nothing for me. And I'll never forget where I was when I read that. And I was like, wait a minute, what is he talking about? And literally, that was my entire pivot, huge pivot. Because I read on and he said, look... I loved OT as a kid, loved it. What kid wouldn't love, you know, especially when it's like making your body feel good and all of that input was just so regulating, but it did nothing for my brain and body disconnect. And that was the first time that I started to dive deeper into the research about autism and movement. And it was then that I, you know, really read all of Elizabeth Torres' work, Dr. Elizabeth Torres at a Rutgers. She's done so much work and has really helped me understand better because when you talk to her, I'm like, okay, you need to kind of like bring it down from that scientific, right? Because that's our brain and really make it simple because I want to be able to articulate this to parents in a way that they're going to be able to understand.
So for all of us, every moment of the day, we take in sensory information, our brain does through, you know, vision, auditory, spatial awareness, our body, textures, all of those things. And then the feedback system allows our body to move.
Well, we know there's tons of research on sensory dysfunction in individuals with autism. So their brains are either... Letting too much information in and not kind of giving that most efficient sensory processing or not enough. And therefore we're the individual seeking out more of that input. And so that whole system is off and kind of tangled and not really functioning efficiently. And so just from that, we're going to know that their motor output is going to be off. Whatever that might look like, right? But then further into what she talks about is there's all of these disconnections and entanglements of the neurons, so to speak. And again, translating it from the very difficult scientific language that she uses. But essentially, there's this excess noise that is just there in the brain as it's trying to process. And so their bodies just can't move efficiently. And so then what do we do? And so here, and what I do is what's called intentional movement work.
So I look at a number of areas when I'm doing an evaluation, one of which is vision. And this is actually really integral in spell in spellers method, is the impact of vision because vision is our window into the world. And so if there's something that's off with our vision, that is going to affect us immensely with our spatial awareness, with again, getting from point A to point B being efficient. And if you have a child, that's a non-speaker parents are like, okay, so what do I do? How do I know if vision is off? And so there's a number of developmental optometrists that we work with that can help support an actual full-on developmental optometry evaluation because we want to look at vision as a whole in terms of how is the brain behaving processing what is being seen, right? We want to make sure that they can see clearly, which is visual acuity. That's the first thing. But then we want to know like depth perception, you know, are they seeing double things like that? Because that's going to affect their regulation as well. Then the other thing that I look at is reflex integration, because so many of my clients who haven't had a lot of movement because movement is hard, right?
Still have retained reflexes, which is then going to affect their motor output. So we want to give a full evaluation of all of these things.
And then we want to start to engage the individual in, Okay, what does it feel like to intentionally move your body? Right. What does it feel like? And the way that we do that is by what we call coaching the body.
So breaking everything down into steps and then coaching them through those movements. Now, when I think about what Ido said way back that OT did nothing for me, he then continued on to say the best thing that my mom did was to hire a trainer. And so I then revamped my entire clinic to take out most of the sensory, not all of it, but most of the sensory equipment and transform it into essentially a gym.
So we have a treadmill, we have the weights, we have all the things so that we can start to implement some intense motor work because that's giving the sensory input the proprioception, but then actively having the individual participate in the movements because with active participation, you're then starting to build those pathways. And we just start with functional movements, push, pull, hinge, you know, squats, all of those things that we do every day in order to then start to go and move into more complex tasks.
So that's where, you know, families will come for like activities of daily living, which that's an OT thing, but we need to have better control, better regulation of our, for our bodies to then be able to do those more complex tasks. So that's then once we get into like, okay, goals are, I want to be able to, you know, dress independently. I want to be able to get my backpack and get to the car. I want to be able to all those things that more traditional OT can, We just come at it from the viewpoint that we have to build these connections before we can get into a complex task. We need something that is going to be involved, more gross motor, sensory feedback, and regulation, so then we can help support with those more individual goals.
Len Arcuri | 25:13
Well, that's very comprehensive. And again, I'm nodding as you're talking because a lot of the I to have that integration, right? To promote what should be a natural connection, which for whatever reason, for a lot of people and a lot of kids, there is that disconnect. And again, if it was something that you couldn't do anything about it, okay, well, that's tough. But the reality is through movement and these other modalities that you're talking about, am I overreaching by saying that with the right approach, parents can see pretty dramatic improvements relatively quickly.
Dana Johnson | 26:12
Absolutely. And I think, you know, it depends. There's a lot of things, you know, because that's always the question, right?
Well, how long? How long? And I think, you know, I see clients from... All different motor complexities, all different motor profiles, right?
So, you know, individuals that may be more impulsive or, you know, be more injurious, whether it's to themselves or to others, like, and it all stems from that regulation piece. And so that's the very first thing that we're working on. Right. Is the regulation piece, because for all of us, if we're not regulated, it's very difficult to do things. And so, you know, it's not that we're addressing the behavior. We're looking more at regulation and building intentional motor because you can't be impulsive. And intentional at the same time. And so when I explain that a lot to parents, because they're like, well, then, you know, what do you do if this behavior comes up or, you know, the aggression comes up and I say, well, I coach the body to be more intentional. And because you can't be impulsive and intentional at the same time.
So if it is something where we're in this kind of loop of self injury, well, then maybe it's something like here, can you grab this, you know, coach their body to grab it and put it somewhere else, right? So it's and it's not always that simple. And it's not always like, yeah, I'll just pick it up and then take it. But it's the intention of okay, let's calm. Our bodies.
And then let's work on being more intentional because that's really the basis of it is the regulation and that, you know, supporting regulation. We can go down, we can do a whole podcast on regulation because there's so many things. It's not just sensory integration. There's so many things that are involved in regulation.
So, but that's for sure. Accurate when you're describing like, yes, we have an OT lens, but we realize that there's so many other things that all work together that I've educated myself on beyond the world of OT, because I know that there's so many more things. I think that something that is frustrating for families, but then for me as an OT is that this isn't the norm.
Like I said, way back in And when I went to school, this is nothing like I was not taught any of this. I've learned from my own education and my clients, but I, They search, they, they're coming to see me, you know, out of town for an intensive, but then they go home and they're talking to their OT and their OT is like, well, let's work on handwriting. I'm like, You know, like, it's like, we got to look at this in a from a different perspective for those individuals, right? It's not everybody. For those individuals with neuromotor differences, we have to start looking at this differently.
Len Arcuri | 29:17
Yeah, it's about where meeting that person, that child, where they are. And again, handwriting, yeah, sure, maybe something that you want down the road, but that's not the focus right now. But again, as you were explaining all that, you know, my head kept going back to the beliefs because you talked about. The term dysregulated, which I think is a great term and a much more accurate term to describe what might be going on. Because again, a lot of parents may be, you know, seeing what their child's doing and again, incorrectly believing that it's aggression or that their child's doing something because they're bored or they're angry. And so I've heard you speak before where you talk about how aggression, you know, implies intent. And with these individuals, you that's not what's going on. That is not their intent.
Dana Johnson | 30:07
Right. Absolutely. And I think we actually have... Four ways, four main ways that we move.
So the first is, you know, as we're learning a new skill, And we call that more purposeful movement, right? This is the whole process of motor learning.
So, you know, I want to learn how to play the guitar, right? I have to put a lot more of the cognitive thought into where's my thing, where are my fingers going? What does my left hand do and my right hand do and all that stuff, you know, until I practice. And now I could play the guitar and have a conversation at the same time because I don't, it's becoming more automatic. The motor practice is now those pathways are starting to be built. And so that's what we call purposeful movement when we're learning a new task and then it shifts to automatic.
So like I said, now I can just play and strum the guitar while I'm having a conversation. It's now in a different area of my brain. We have reflexes or reflexive movements. And those are there really for protection because if I'm cooking and I put my hand over the hot stove, I don't want it to wait for that sensory input to then go, I should move my hands because I'm going to end up burning myself.
So we want to pull our hand away. So that doesn't require cognitive thought. That's a protection.
So lastly, impulsive movement, which is triggered by two things, emotion and sensory input. And When we when you said earlier that sometimes it's difficult to not take what you're observing in your child as, OK, they're frustrated, they're angry, they don't want to do this. Right. It's not always that. And when I say emotion, I didn't say negative emotions or angry or frustrated. I just said emotion.
So what your child might do is self injurious or become more injurious overall could be because they're excited, which is so hard to kind of grasp emotionally. But that's what their body has practiced over and over again. And so it happens. And so we immediately are like, doesn't want to do this, doesn't want to go there.
And then we stop whatever's happening, even though they're excited. And then we see more dysregulation. And we're like, And it's hard. It's really tricky. But that's where it's that mind shift again to kind of go, okay, so then what do we do? And it goes back to let's regulate.
And then we get more intentional to help with that because they want to. And we talk so much about presuming competence in the individual that they understand. We say that a lot. The other thing that I talk about is presuming competence in their body. And what I mean by that is they don't have control over their body a lot of the time, but they desperately want control.
So we presume competence and their ability to understand. We need to presume competence. In their ability to like want to follow directions. We want to go out to the car, but because I can't get my body off the couch doesn't mean I don't want to.
So when I explained to parents who were like, well, how do I know? Is it that he doesn't want to, or that it's his body and he's stuck?
Like, what do I do? And I say, it's the same thing. You coach their bodies and be more of a coach, right?
Like if you had a coach, your coach is going to be like, okay, I know this is going to be hard, but you know what? You have the skills. I'm going to be there for you to do it. I'm going to coach you and we're going to get this job done. Sure, your child might not want to go with you to run errands.
Like that's all fair. But we have to there isn't an option in this case.
So but we got to get there. And I know your body is having a hard time.
So It's not perfect. It's never perfect. But it's something that I see a lot when parents start to use this motor coaching language. It becomes more automatic, right? Because we practice something, it becomes more automatic. And they will say my goodness, like, he went and he sat down in the car. It was like, they look at me like that. They're like, he did it. And I'm like, I know.
Cause he can do it. But it's the way, it's your mindset. It's the way in which you coach them. And it shifts things. It shifts a lot of things in the family dynamic. It really does. And that's, you know, one of my goals, of course, but it's in the positive way. And again, it takes time and apraxia shifts from, yes, you know, great day to, you know, What happened? And that's the reality of it.
Len Arcuri | 35:01
No, that sounds very logical and makes perfect sense to me. And especially for parents who are listening, I mean, it's just amazing to be aware of this approach, which is very different. But again, there's a lot of principles you've touched on, which as a parent, you know, Can you as a parent right now kind of embrace that role as a coach, right, for your child? Because there's a lot of subtleties with how you show up as a coach versus maybe a parent where it's, you know, more of a, not dictator, but, you know, sometimes parents go to it like I did, like to tough love or to, hey, this is the way it's going to be. And again, your child doesn't. They need a strong parent, but they need someone who's loving and who can guide them and to coach. And coaching is a skill. I know I had to learn it when I made my career shift to do this type of work, working one-on-one with parents. But I guess that's something for us to kind of bring this conversation to a close. If you're to give parents some guidance, some coaching tips on being a coach, What would you share with them on how they and how they're presenting to their child? What shifts can they make?
Dana Johnson | 36:13
I think it goes back, Len, to the beliefs and what you said, because you can observe your child sitting on the couch and not moving, right? And kind of go, okay, what are your beliefs right now with this? Right. And it's easier when I'm working with parents, it's easier to think of a situation than in the moment, because we're all so busy and we're all like, go that in the moment for me to say, okay, pause in that moment and think it's just not, it's not going to happen. Won't happen for me either.
So I would say, think of a moment, you know, that has been frustrating and think of all the possibilities that like it could be. So in your mind, what are you thinking is happening? Right. Then go, okay, so if like, let's just, kind of you know, possibly take this other consideration into play here that. He or she cannot initiate their bodies because they have apraxia. And, you know, the majority of individuals with autism have apraxia. And again, apraxia is a spectrum, right?
So it's not everyone looks like, well, they can't move. Some have good movement. It's now we're looking at pacing and that kind of thing. But if your child just isn't following and isn't doing that, there is the possibility that Because that is one that they can't initiate their bodies to start moving. And often, what happens is once you kind of get them going, then they can continue because it's so hard just to initiate.
So really kind of think back and go, okay, so what is it? Could be they don't want to. Yep, absolutely could be. Could be that they didn't hear you. 100%. They could have. Thirdly, it could be that they literally want to, but they can't move.
So what are we going to do? We're going to start coaching their body. We're going to like think about the steps. What's the first thing that you need to do that you do yourself to get off the couch.
Well, we lean forward. We bring our shoulders forward to shift our weight to then stand up. Right.
So that's going to be the first thing. Bring your shoulders forward. Our goal, we have, we're going to go get to the car, right? Let's do it. Keep going, you know, and really start to coach them and see what happens. And I think just while I say that is something that I hear a lot from is, well, you say it one time because they have a processing issue and they can't.
So if you're going to keep repeating it, like what we coach parents to do is to really keep going with it, not yelling the yell. But just kind of keep coaching them, like, keep going. You've got this, bring your shoulders forward, go those kinds of things. That's what's going to help them move their body when it's like, well, they have an auditory processing issue. They have a processing issue. We don't really know that for sure if they are non-speaking and they don't have a way to communicate because of their motor disability.
So again, we can do it quiet. We can just be like, ready? Keep going. Go. You got this.
Like now you're being the cheerleader, right? And just see if they can get going off the couch and move forward.
You know, experiment with that. There isn't necessarily a wrong or right way. We're definitely individualizing things to the families, but we That would be the first thing is that the mind shift that this could possibly be something different than they don't want to do it.
Len Arcuri | 39:34
No, that's great. And again, as you're talking, I'm just imagining me approaching my son in that way, right? And shifting my physical body positioning. But I would have to imagine, right, my expression is going to mean a lot, my tone of voice, the tone.
You know, my son's 17. I still got to revert to a therapist voice with him, which is totally unnecessary. It's not like he doesn't understand me, but I, but again, I think there's a lot of subtleties with how you can just be a really effective, loving, warm coach who your child's receiving. This is someone on my side as opposed to someone who's kind of, pushing against me, right? Which never works.
So yeah, you're giving me some food for thought for sure. But, and one question I just have to ask and, you know, sorry to put you on the spot, but yes, perhaps in those situations, it could be that a child is being defiant. It could be that they're not understanding, but in all honesty, like 98% of the time, It's not one of those two things, right? They understand everything. Again, they're just not able to convey that. Is that fair to.
Dana Johnson | 40:45
Say? 100%. Yes. And that's a strong belief that I have. And I get that when I'm working with, you know, my clients, I am not their parents. And so it is going to be quote unquote easier, right? Because you have the parent child dynamic and that adds in, you know, another element to what we need to work on, which is fine. But yes, I literally every single client that I work with that comes in, whether they're in for working on intentional movement or spelling, they're 100% of the time, I am belief that they're going to do this. And I don't care if it takes the entire time for them to do two chair squats, or, you know, two of some other movement that we're working on. It doesn't matter. Because the important thing is, and this is important to kind of consider as a parent in the moment is that We can't push them to do it. And what I mean by that is so many parents will be like, well, if I'm going to help and assist and they're going to push back. And I'm like, yes, because they want control. We have to give them control. It's very invasive. If somebody came over to you and was like, all right, we're going to go, you would probably push back too.
So that's where we have to do more of the coaching so that they're actively moving their body to build those pathways. So hard some days. I can't... Leave here to say that that's, it's the easiest thing in the world. Just do one, two, three, and boom. It's not, it's a journey. And I think that Part of what I do is to encourage parents that this is going to happen. I had one mom who would call me at least once probably every other week, sometimes every three weeks. And just, I was spelling with her son who was very motor complex. And I was doing some movement and, Are you sure? Are you sure that this is going to work? Are you sure that this is going to work? A hundred percent. I'm sure. Let's keep going. Okay. Next, you know, three weeks from same thing. And to this day now, he is an open speller typing. He, you know, so it just took him longer to get there because he had more motor complexities happening, but he did it. And it was like, I'll never, he'll be a client that I'll remember for the rest of my life because yeah. He worked so hard.
Len Arcuri | 43:10
That's amazing. And yes, belief. Parents, whether it's in this situation, if your child's perhaps a non-speaker and this is very relevant, or even if it's not, if your child's an actual speaker and this is a particular challenge, your beliefs dictate everything.
So again, and that's something we have 100% control to shift. And so that's where, yes, hope and positivity are important. But if you get your belief aligned to what you're doing, then as Dana mentioned, the work It may still be work. It may require effort each day, consistent action, but you'll never stay the course long enough unless you're being fueled by these beliefs that are more supportive. And in all honesty, they're just more accurate because I think what you've been witnessing along with Dawn Marie and all the people who are, you know, part of this community is, And all these parents who have children who they've underestimated and every to a parent, they're all shocked at how much. Their child is understanding everything, the capabilities. I know it never gets boring, but parents, they do. They understand so much more than you could possibly imagine. It's just about meeting them where they are as a great coach with good approaches to help them with what specifically they're most needing right now, which the standard services that are out there and no knock on those providers, A lot of times they're trying to teach your child something that they're just not ready for and from a sequencing standpoint makes no sense.
Dana Johnson | 44:52
Absolutely. And it's, you know, I talk with professionals all the time and they're like, why didn't somebody tell me this?
Like they're legitimately, they don't know. And it's those individuals that do know and choose not to, that I have a problem with. But those, the majority of them, absolutely no idea.
So that is, you know, because parents will leave and go back home and talk to their OT or whoever. And I'm more than happy to go, okay, let's talk. Let's have a conversation because, you know, You're right.
I mean, it's their intentions are there. Absolutely. But it's so much more than just one thing.
Len Arcuri | 45:32
That's great. Well, hey, I so appreciate what you and your team are doing. Any final thought for our listeners from your perspective?
Dana Johnson | 45:39
I just, I think, you know what, you are the expert in your child. And I say to parents all the time, you are talk to other professionals And to educate yourself, which is wonderful, go with your gut as a parent, because so many times, you know, like I said, at the beginning, when parents come in, and they're like, I knew he was smart, I knew and literally, they name all the things that they observed in their child to go, I knew he was in there. And, you know, but it was stifled by professionals who, again, don't know for the most part. But that's what I would say is just go with your gut because you're the expert and then seek out individuals who are there to support you and not only empower you, but keep like you're part of the team. You're part of the team.
So, yes, I'm just here to encourage families.
Len Arcuri | 46:34
Fantastic. Well, very powerful words. And again, parents, you have total control over how you're looking at this.
So, you know, Consider. That it may be a brain-body disconnect. And if that's true, and if that seems right for your child, again, there's so much that you can do.
So go to Spellers.com to learn more, find out more about the team and all the amazing work you're doing, Dana. And again, I really appreciate you taking time to share your perspectives with everyone today.
Dana Johnson | 47:06
Thank you. Thanks so much, Len.
Len Arcuri | 47:09
Your child wants you to transform now. And the fastest way to do that is with personalized support. To learn more, go to allinparentcoaching.com/intensive.
