[00:00:00] 

Intro

Kate Grandbois: Welcome to SLP nerd cast your favorite professional resource for evidence based practice in speech, language pathology. I'm Kate grant wa and I'm Amy 

Amy Wonkka: Wonka. We are both speech, language pathologists working in the field and co-founders of SLP nerd cast. Each 

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Episode

Kate Grandbois: Welcome to SLP Nerd Cast. We are really excited for today's episode. We've been chitchatting away in this zoom room before we hit record with lots of laughter and a lot of nerdy tangents. Very excited. We are here to welcome.

We have the pleasure of [00:02:00] welcoming Chris Russell back to the show to talk to us about a a c and CVI Welcome Chris. Thank you so much Kate and Amy. I'm really happy to be back with you guys. Uh, we're super happy to, as you know 'cause we've been chatting so much. Um, you are here to talk to us about considerations for design and implementation of a EC for clients who have CVI.

Amy Wonkka: Before we get started with the exciting topic, can you just tell us a little bit about yourself, um, and your work with CVI? Absolutely. So I have worn a number of different hats in my work over the last 15 years. Um, I've been a paraprofessional at a school for the blind in California and then in New York when I moved to New York, I've been a classroom teacher at a school for the blind, working with kids with multiple disabilities.

Chris Russell: Then I went back and got my TVI certification, so I've been a TVI. Um, and then for eight years I worked with the New York State Deaf-Blind Collaborative, the State Deaf-Blind Project in New York, funded by the US Department of [00:03:00] Education. And um, that is really where I got deep into CVII would say mostly just because my work involved, um, traveling around New York and providing technical support and coaching to schools, and I just saw such a huge number of students with CVI.

I recognized my own need to get more training in that area and. Kind of that led me to where I am now. Now I am actually working as a special ed teacher and TVI in a pediatric ICU through the New York City Department of Education Hospital Schools. Your background is so interesting and you obviously come to this topic with a lot of experience.

Kate Grandbois: Um, before I read our learning objectives, I wanted to take a second to talk about why this topic is so important. And Amy, I am gonna pass you the mic because I know this is a topic you are very excited and passionate about. I know, I do. I have big feelings about it. Um, I feel [00:04:00] like as somebody who started off in the field of speech pathology, really interested in a a c from the very beginning, I knew nothing about CBI when I first started out.

Amy Wonkka: Um, and I would go to professional developments and I would go to conferences, uh, and I would hear, you know, all of these messages around the importance of core vocabulary, the importance of a robust symbol system. Um, and you know, I would have clients where it would be years and years and years and years, and we're trying kind of the same intervention.

And not seeing a lot of change. Um, and the message that I got often was just, just wait. Um, and I think access to robust symbolic communication is very important. Um, but sometimes we are forgetting about this whole pres symbolic piece and we're forgetting that for some of our clients, those concrete symbols are a really important thing for [00:05:00] us to be considering.

Um, so I have been really fortunate to work with some amazing t vs. Um, and o and m specialists, um, and take some really great classes through Perkins Online. So I am just super excited to have Chris back here to talk to us a little bit more about this because I think it's an area in our field where there's sort of a gap in our education and it really affects our clients a lot.

Chris Russell: You know, Amy, what you just said about sort of that, um, those examples that you've seen and I've seen as well, which is really what led me to the work on a a c about, you know, seeing kids who don't make progress year after year with the, the systems that are in place. And I, I spent a lot of time thinking about exactly this issue and what was going on there.

And, and same on the opposite side, working with some really talented speech pathologists, um, mostly around New York state, um, but outside of New York state too. [00:06:00] And, and that's sort of what led me to this idea about the real issue here is some sort of mismatch between the sensory access and the communication level access.

So, and it can be on either side, and so for example. Um, a mismatch in sensory access usually happens when there's a communication system that's chosen very appropriately. It makes perfect sense communication wise from a communication standpoint. And there, that's usually because there's a speech pathologist or other a, a c expert involved who, you know, has put a good deal of time into assessing that individual and coming up with a system that totally fits.

But on the vision side, there's something missing and there's a disconnect in the design of that system and what it looks like, right? So the most obvious example of that is an eye gaze system for a child in phase one. Right? And we'll talk about phases and characteristics and [00:07:00] stuff too as we go, but, um, but an IGA system for a child in phase one just simply isn't going to work, even if it makes sense from a communication and meric standpoint.

And that's because a child in phase one isn't able to fixate or establish eye to object. Connection, right? Direct visual fixation. And so, you know, you may find like that they're successful in selecting a huge area or field from an indirect view, but that's not gonna work for a communication system.

Right. And then. On the opposite side, a system that is appropriate from a sensory perspective, usually because there's like a great TVI or other CVI expert involved who's done a great deal to adapt this system, but it's not appropriate from a communication standpoint. And the one that is most obvious, there is a child in phase late phase two or phase three who has this complex 2D iPad system, um, with beautiful symbol selection, [00:08:00] black backgrounds, spacing between icons, a combination of photos of real things and super distinctive symbols.

But the child doesn't know the meaning of any of those symbols from a communication standpoint. And so all that you're doing is just modeling symbols that the child. Doesn't yet have in their receptive vocabulary. Right. And, and, and I understand like the idea, and I'd love to hear from the speech pathology standpoint too, like, um, from a modeling perspective, I totally understand that modeling is how you get to that next place.

But, but I think that's what you're referring to too with this pres symbolic stuff. What's the scaffolding We need to boost a child up to be able to develop some symbol recognition and symbol use before slamming them with a whole array of abstract symbols. There is obviously so much to get into and this gap that you're describing.

Kate Grandbois: I am, I am assuming that many people listening who [00:09:00] work in a, a c have experienced this, this gap in, in a between sensory and communication in a variety of ways. Before we dive any deeper, I do wanna read our learning outcomes. I also wanna mention, you know, Amy mentioned, um, Perkins when, when you were talking earlier, Amy, about, you know, your.

Your excitement Perkins is refers to Perkins School for the Blind. Uh, it's a resource that we have here locally to us here in Massachusetts. And as we go through the episode today, any reference, uh, any resource, any online program, anything that we mention will be listed in the show notes. So if you are listening and you are curious and you would like to learn more, please don't hesitate.

First and foremost, do write in, send us an email if, if we've missed something, or go ahead and check the show notes. That's where we t typically list all of our resources. So without further ado. I'm going to read our learning outcomes. So after listening to this episode, participants will be able to self-report knowledge gains related to the 10 [00:10:00] characteristics and three phases of CVI.

Learners will also be able to report knowledge gains related to reasons clinicians should consider pre linguistic and or symbolic. And or pre symbolic communication when planning a a c for clients who have been diagnosed with CVI. And finally, after listening to this episode, learners will be able to self-report knowledge gains related to important considerations when using aided a a c symbols with clients who have been diagnosed with CVI.

If anyone listening would like to learn more about the financial and non-financial disclosures for this course, all of that information will be listed in the show notes as well. And finally, if you are listening to this episode to earn ashe's, eus, or Certificates of completion, the link to do so to that will take you to the post-test.

It is also listed in the show notes and on the episode page on our website. Okay, that is it. Woo hoo. Well done. Thank you. And also that, and thank you because that brought me back down to Earth. I [00:11:00] feel like we were about to really get carried away with. I know. Well, I wanna get carried away. We're gonna get there.

We're gonna get there. There's just so much to cover. There is a lot to cover. There is a lot. And, and for listeners, we'll, we can put a link in the show notes to our conversation with Chris and Jennifer Willis about the, um, communication matrix CVI work that they did, uh, which is actually how we found you originally was an internet search, stumbled across that work and was like, oh, we've gotta talk to these guys.

Amy Wonkka: Um, but before we get too carried away, Chris, can you start us off with just like an overview of CVI, so listeners might have heard of CVI characteristics or phases of CVI. Can you help us understand a little bit about what those terms mean? Absolutely, yes. And, um, so, and also that makes me, that makes me think too, maybe what we just did with that like wild initial tangent is almost like a thesis statement that we can come back to as well.

Chris Russell: Right? So we're gonna, now we're gonna fill in everything that we need in [00:12:00] order to have that conversation again. Right. Okay. So, um, so I think the first thing is probably just getting a good definition of CVI and understanding that CVI is different from ocular visual impairments, ocular visual impairments being visual impairments that are related to the eye or the structures of the eye, or even the optic nerve, which is part of the structure of the eye that leads to the brain.

CVI, on the other hand, is a neurological visual impairment, and that that involves some sort of atypical structure in the brain or in the visual pathways. Lead between the eyes and the brain or in damage to those pathways. Um, you may have heard, um, additional terms that are used like cerebral visual impairment, or you may, you may hear cortical and cerebral used interchangeably.

Um, there's lots of different perspectives on that, and that's a [00:13:00] whole other tangent that we could get into about sort of the controversy of the use of terms. The reason that I use the term cortical is that when I use cortical, I'm referring to students who specifically exhibit these 10 overarching visual characteristics, and these are the 10 CVI characteristics, behavioral characteristics that are unique to kids with cortical visual impairment.

Now, if you're talking about cerebral visual impairment, you may also be thinking about a whole other spectrum of visual behaviors that are involved in a wide variety of. Neurological visual processing disorders. That even includes things like dyslexia or synesthesia or other visual perceptual disorders that may cause depth perception issues or double vision or something like that, that's different from cortical.

That would all fall into the umbrella category of cerebral. So really cortical is a more narrow, specific condition that also fits under the umbrella category of [00:14:00] cerebral. Right? So with cortical, we have these 10 visual behavioral characteristics, and that's what we talk about. That's what we mean when we talk about CVI characteristics.

Um, those characteristics are expressed on a range of visual functioning, and we sort of roughly split those up into phases. So phase one being sort of the, um, the most severe impact on visual functioning. The, the, the, the lowest in terms of. Processing or functional vision. And then phase two, sort of being the next, moving up and building visual skills that are more typical or more connected to typical use of vision or processing of vision.

And then phase three is the closest to typical visual functioning, which doesn't mean as we'll learn less adaptations. It means more maybe subtle and, and and targeted adaptations. So we've got this range of visual functioning, phase one, [00:15:00] phase two, phase three, and the characteristics are expressed along that range.

The 10 characteristics without, let's see if we can do like the three minute version. Rather than the two hour version, um, are unique color preferences. So I'll give you a quick example and then we can apply that to all the rest of the characteristics. So color preferences is a characteristic that impacts kids just like all the other ones on every area of this range.

So in phase one, a child with CVI may only be able to look at single colored objects, maybe like a bright red toy or a bright yellow toy or something like that. And they may have a very strong color preference and only really be able to deal with visual processing of that specific bright saturated color as the child moves along on the range.

In phase two, we are able to look at objects of multiple different colors, um, maybe even objects that have a couple different colors on their surface, two or two or three colors [00:16:00] on a surface of an object, and we're starting to be able to look at red, blue, green, et cetera. But we need bright, saturated colors to anchor the child's visual attention to something that's difficult to attend to otherwise or to, to perceive or interpret.

Then in phase three, a child can really look at any colors, um, you know, even more kind of pastel and gray tones and black and whites, but we still use those bright saturated colors to highlight information for learning, for example, to highlight, um, you know, a component of a picture to use red to outline maybe like the, um, the glasses on a person to recognize that that's that person and so on.

So every characteristic exists on different levels or phases of, um, of this, of this range of visual functioning. So color preference, need for, or, um, need for movement. To elicit or to [00:17:00] sustain visual attention, visual field preferences. And the important thing there is that it's preferences and not losses.

So kids with CVI don't experience a loss of a visual field. They ex, they exhibit a strong preference of a visual field, which means it's not that the child doesn't see things on the left side is that it's easier for them to see things on the right side. And they, they need to develop their avail, their ability to, to perceive things on the left.

Um, difficulty with visual complexity, which is a huge one that we could spend a whole hour on. Um, there's four different types of complexity. Complexity of the array, complexity of objects. Array is really gonna be a big one when we talk about a, a c multisensory complexity. Uh, more complexity, the environment itself.

Then complexity of faces. Faces themselves are complex and difficult to recognize and, and interpret, um, need for or attraction to light, which is not just light gazing, but also means that backlighting, for example, on a tablet, enhances visual attention, difficulty [00:18:00] with distance viewing. Um, atypical visual reflexes or blink reflexes may be different.

Um, difficulty with visual novelty, which is also gonna be important. We talk about iconicity. Things that are familiar to the child are easier to perceive and interpret than things that are new or novel, including environments, but also any visual target. And the last one is difficulty with visually guided reach.

The ability to look and establish reach and tactile contact and exploration simultaneous to sustaining visual attention. So that's the whirlwind, three minute, five minute version, characteristics and phases. 

Amy Wonkka: That was so impressive. That was a good overview in a short amount of time. Well done. Think 

Chris Russell: you've done it before.

Amy Wonkka: Uh, this is not your first time. Um, along with that, are there other associated disabilities or learning needs that we're often seeing? So for those of us who are working in a, a c, you know, [00:19:00] we're, we're working with clients who are non-speaking or minimally speaking. So often they're going to have some other diagnosis that's, that's coming along with them.

Um, and I guess I'm thinking, I'm thinking of clients in my past who possibly had CVI, but I did not know as the clinician. Um, any tips for those of us out there in that situation? 

Chris Russell: A hundred percent. And that's such an important question, and that's a huge part of how I got into this work as well, was I realized that I just didn't know enough and I was going around from school to school and I was, you know, walk into a classroom of 12 kids in Rifton chairs and, you know, nine of them are staring at the ceiling light.

And it's like, well, are they staring at the ceiling light because they're angled at a 60 degree angle in a Rifton chair? Or are they staring at the ceiling light because they have that attraction to light characteristic and and so on, right? So, um, in terms of overlapping or kind of comorbid diagnoses, um, [00:20:00] CVI is caused by some sort of atypical structure or damage to the brain, right?

So very often you're gonna see other things come with that. Probably the most common associated condition is cerebral palsy. But that doesn't mean that cerebral palsy is a cause of CVI. It means that whatever caused the cerebral palsy could also have caused CVI. But we know that many, many, many kids, in fact, most who have cerebral palsy or most individuals who have cerebral palsy don't have CVI.

You know, it really is about where the, um, where, and the extent of the damage or, or atypical structure in the brain is. But definitely within the population of kids with cerebral palsy and additional disabilities, there's a high suspect or risk for CVI. Um. The main causes of CVI are anoxic or hypoxic brain injury, and those tend to be high risk for, um, for low [00:21:00] weight early preterm infants.

So again, doesn't mean that all low weight early preterm infants have CVI, but, um, but there are associated or overlapping risk factors in terms of identifying kids with CVI amongst the population of kids with multiple disabilities. Your best bet is those 10 characteristics. Um, and observing them in, in a subtle way.

I would say the hardest thing is to identify kids who are further along on the CVI range kids who are in phase three if they haven't had an uh, a, um. If they haven't had a diagnosis or been identified in the past, those kids are gonna be harder to identify because phase kids in phase three are easily misunderstood as having learning or reading disabilities or, um, or even attention deficit disorder or autism.

Right? Um, because there's many overlapping types of behavioral characteristics. Kids in phase one and early phase two are very easy to identify if you have a good overview of the [00:22:00] characteristics. Um, so, and then in terms of other, you know, there's so many different over, you know, uh, other overlapping, um, conditions, deaf blindness, for example.

Um, CVI is the highest cause of visual impairment within the population of kids who are deaf-blind. Um, CVI is the, is the highest. Um. Form of the highest recognized form of visual impairment, most frequent recognized form of visual impairment, um, across any population. But we are definitely seeing more of those kids in populations that have other physical, sensory and especially neurological conditions.

Amy Wonkka: Okay. That's super helpful. I have some fancy words to throw out that I'm hoping you can explain to us a little bit about, um, visual processing and the two types of visual processing being dorsal and ventral. What does that mean? 

Chris Russell: This is really, really important. Um, and I can give you like, again, the [00:23:00] quick version, but with this one I can give you the quick version 'cause it's about what I understand.

Um, I'm not a neurologist, I'm not a neuro-ophthalmologist, but I think that this is super important to understanding CVI and it's actually as important as the characteristics. So, um, and if you can kind of grasp this concept, I think it's gonna help you to understand what level of intervention. May be appropriate for your student and it's gonna be really helpful to guide you in assessment.

So the current theory, and this is not like accepted truth, this is the current theory on, on how visual processing works in the visual cortex, which in the back of your brain there are two streams of visual processing. And you can think of these streams, almost like roads or highways, through which information that comes through your eyes passes through your optic radiations.

It's where that information is made sense of and sent out to other areas of the brain including, um, to, you know, memory systems and language processing [00:24:00] systems and object identification systems and, and then, you know, physical response systems as well. So all of that happens incredibly. Quickly, obviously instantaneously when we open our eyes, we're immediately processing what's around us.

What we take for granted in typical visual processing is that those two systems work together fluidly, and we don't think of them as separate things in CVI. We actually really see that they are separate things because kids with CVI, those two systems are not integrating well and one is developing better or earlier than the other.

So the dorsal stream, if you know a little bit about CVI now, um, you're gonna kind of start to guess where we're going with this as we hear about each stream. So the dorsal stream gives you information about sort of where things are, but not what they are. The dorsal stream gives you information about the rough form and shape of things around you, but not the detail.

And the dorsal stream also gives [00:25:00] you information about light, color, bright colors, and movement, right? So, um, the dorsal stream is similar. If we wanna do like a simulation of CVI, what we get from the dorsal stream is similar from the information that we get from our peripheral fields. So if you sta you're sitting where you are, you stare straight ahead at you.

What do you see around you in your peripheral fields? If you're staring straight ahead, you see things that are, can you see if there's movement? I'm waving my hand to my right side while I'm looking straight ahead, I can see that my hand is moving. If I shined a flashlight on it, I could see that it was illuminated.

Um, I could especially see things that are brighter colors. So if I have something on the wall or in the room that's like super bright orange or yellow, I can see that color, but I can't make out any of the detail of what it is. So that's your dorsal stream. Kids with CVI on the earlier side are starting to get some dorsal stream connections, but they're not getting any of the ventral stream, [00:26:00] which is the information about what you're looking at.

And the ventral stream is more similar to the information you get from your central fixation, which gives you information about detail, um, you know, acuity. Comes from the ventral stream. And then ultimately the ventral stream gives us information on object processing. So the dorsal stream is more like spatial processing.

The ventral stream is object processing. That is connected more to language centers too, which there's not nearly enough research to understand what that actually means for development of communication and language and what this means like for speech pathology work. But, um, I think we can understand that the ventral stream and the need for eye to object contact is super critical to symbol discrimination, right?

Because we can't discriminate or identify or recognize a two dimensional symbol if we don't have the ability to [00:27:00] fixate on it. And if we don't have the ability in our brain then to process that information through the ventral stream and get sent out to language and, and object processing centers. So in short, um.

What we're seeing in CVI, we start with phase one, a little bit of dorsal stream processing, maybe some bright red colors that are illuminated and moving like a glow stick or something. Then as we move into phase two, we're getting a little bit, we're getting stronger dorsal stream right about in the middle.

Uh, now I can see things in the right side and the left side, but still only bright, colorful moving. Then as soon as we establish that eye to object fixation, that direct visual connection and you know, central fixation, it's a clear indication that the ventral stream is activated and we have some access to 2D information and to more detailed information.

It doesn't mean that the child knows what it means or can interpret it, but they do have initial [00:28:00] access to it. As soon as you observe central fixation, even if brief. That's ventral stream. And then from mid phase two, all the way into late phase three, it's all about, all the interventions we're doing are actually geared towards strengthening the ventral stream and teaching the child what they're looking at and, and teaching them their own skills to determine what they're looking at.

That's salient feature instruction. It's really, that's just a way of, a less techy way to talk about ventral stream teaching, ventral stream processing. 

Kate Grandbois: I had no idea that this, this was such a, i I to say that I knew that visual processing was a neurologically complex experience, but to break it down into its most finite pieces, I'm already reflecting on so many clients I've had where I'm like, whoops, I missed, I, who knows?

You know, these things are, are obviously critical underpinnings of the [00:29:00] choices that we make. And I'm now reflecting back on the conversation we had at the beginning of the episode about this mismatch between sensory systems and the a a c systems that we may be, that may be prescribed or, or that may be being used.

And I wonder if you could start telling us a little bit about the connection between these neurological systems behind CVI and Pres symbolic or maybe post symbolic communicators. 

Chris Russell: Yeah, it's a really good question. Um, so, so the first piece is that there, there isn't, or at least there shouldn't be, theoretically, a direct connection between level or phase of CVI and, um, anything related to concept or communication development.

So there shouldn't be a direct connection to it. However, I think in reality what we see is a lot of the kids who have more additional complex [00:30:00] multiple disabilities spend longer times in phase one and phase two and not as much in are, I don't see as many kids in phase three who, um, who don't have language, if that makes sense.

So, and I, I don't know if the reason for that is, is the lack of quality interventions or the time spent being misunderstood, or if it actually has to do with the level of neurological impact. I wouldn't wanna make generalizations about that, but I would say that, um, that basically the pres symbolic conversation is like, it's almost, so there's two things, right?

There's, there's, that's that sensory, that's that, um, that's C-V-I-A-A-C sort of balance and mismatch thing. The sensory access part should be geared a hundred percent towards where they fall on the CVI range. And that may not be equivalent to where they fall on like the [00:31:00] communication matrix. We don't always see like pres symbolic kid in phase one.

You know, although I will say like I do see that a lot, but what's really hard is pres symbolic kid in phase three. That's hard, right? So how do we bring that to a balance And, um, pres symbolic kid in phase three, that means that the child is able to, in phase three over here, they're able to view two dimensional materials, right?

So we can do all these amazing, beautiful adaptations, but we've gotta recognize that that child is still doesn't have, uh, expressive use of symbols. So that's a kid that we're gonna use a super, super visual system, but we're gonna use, um, communication level scaffolding like. Tangible symbols, object, uh, communication calendar systems with super repeated concrete routines, connecting objects to the activities that we're doing with them.

You know, the, a [00:32:00] calendar box, I don't know if this familiar term, um, to a lot of speech pathologist, calendar box. 

Amy Wonkka: No, please describe it. I've never heard of it before. Please describe it. 

Chris Russell: So, so this comes out of like the field of visual impairment, more like ocular visual impairment and blindness. Um, the American printing, hu for the blind, um, has materials for calendar boxes.

Um, but really like you can use a shoebox, like you do not, like, basically what you're doing is you're creating a station, almost like a little area, like a workstation where you have containers, right in a sequence. And in each container you have the objects that are used in that activity and the activities are sequenced as they're gonna be sequenced and experienced in the day.

So the child, as part of the routine, they go to the calendar box, they interact with the stuff in the box, um, and then they take that box with them to the activity where they then use the stuff right. Then they're gonna, then when the activity's done, they're gonna go back to the calendar [00:33:00] box, put everything that they just used into a finished box, and then go to the next box, right?

That's not symbolism, that's object communication, right? That's not, none of those things are being used as a symbol that's using the actual objects in the activity to experience or refer to the activity. It's an amazing and super important first step towards establishing the connection between, um, objects and experiences, but it's not yet symbolism or even pre symbolism.

Amy Wonkka: So, Chris, just to say it back to you, so in that example, let's say my student has snack and then they're gonna go to the bathroom. They might have in that calendar box, the actual spoon that they're going to use to eat their snack and their actual diaper that they're going to take to the bathroom.

Chris Russell: Exactly. Okay. Right. So we're talking about the use of real objects. It's, it's, um, pre-experience [00:34:00] and then post conversation experience of, of objects that are used in the direct activity. So that's object communication, but that's not symbolism yet. So to take that to the next step, the most concrete symbolic representation to add to that, and you could actually add it to the same activity.

It's, it's not a replacement. It's like an extra layer of scaffolding would be a tangible symbol that represents that activity and a tangible symbol. We can talk about iconicity for sure. There are levels of concreteness or abstractness of what symbol you choose, but the most concrete symbol is an actual part of that object that's used in the activity.

But it's really important that we take that part of the object and attach it to a cardboard or plastic backing, because what we're doing when we attach it to a backing is we're telling the child, this is not the object that we're using in the [00:35:00] activity, the object. We're using activities in that bin right there.

This is a symbol for that object. And we can use this symbol to communicate about what we're doing in that bin. You know, so this is, that's I think the most true example of concrete scaffolding is a combination of a calendar system, calendar box, and then a tangible symbol to represent that calendar box.

So the tangible symbol pulls it back in space a little bit, and now we can have a conversation over here about, Hey, it is time to go to gym. Okay, let's talk about that and let's take our symbol to the calendar box, interact with the objects that are gonna be in the gym, then take it to the gym with us.

Right. So we've added another step. You know, the development of symbolism, as I'm sure like from a speech background is, is something that, that you all are, are gonna be like very rich in understanding. It's really important to think about the [00:36:00] concept of distancing and that the development of symbolism is actually the achievement of distancing, which is a term that was used by Werner and Kaplan, um, and their work on symbol development.

Um, yeah, Werner and Kaplan. And, um, and that's like in the seventies, I think. And distancing is a great term because we're talking about separating the, the reference from the symbol in time and space, right? So, um, so like drink, that's the actual activity or the object or the verb or whatever. So how can we communicate about drink?

I want drink. Or like I'm finished with a drink. Um, how can we communicate about that without having the drink in our immediate possession or even in our immediate view? If you talk about CVI well, or visual impairment, it's, there's compromised view, right? So if somebody's not touching something or in direct contact [00:37:00] with them, they actually are at already at a distance with it.

So the development and the, the establishment of symbolism is all about pulling the reference further and further apart from the symbol. And that's the importance of iconicity is that you can't start with the symbol pulled so far apart from the reference that it's not understandable. You have to start with something that's more easily connected to the symbol, which is the most concrete form of it.

So we can't have, like the symbol for drink be like a weird, like upside down question mark or something that has nothing to do with the drink. We have to have it start with like maybe a handle, something that's gonna be experienced. Then we can move it apart and pull it, we can pull it apart in AB and make it more abstract over time.

Kate Grandbois: I just wanna share a, I guess, a personal reflection as you're talking about this. You know, you, you mentioned that speech pathologists likely have a richer understanding of the development of symbolic representation. And I, I, I do, [00:38:00] I do not. I've been a practicing speech pathologist for almost 20 years, uh, and I have to, I'm like reflecting on my own education and I think, you know, again, I'm only speaking for myself, but it's making me ask the question how much formal training we actually do get in terms of the specific developmental sequence.

Again, I'm gonna use the word specific again, specific to the development of symbolism. Hmm. My education was about pre symbolic, a handful of pres symbolic cognitive milestones, like milestones in cognitive development, pre nine months of age, you know, the first year of life. But I am, I can say with confidence in a very vulnerable moment that I, I learned on the job just kind of working with complex communicators.

How important delineating, pre symbolic to post symbolic ca just, just categorizing you. Mm-hmm. And making space for that [00:39:00] delineation. I don't know that I have spent a lot of time, you know, in these very finite, uh, instructional steps to teach this as an explicit skill. Amy, I don't know if you have, are having the same kind of self-reflection.

Amy Wonkka: Yeah, I am, I'm feeling the same way. And I think even as an add-on to that, the pieces that I did learn, again, it's been a while. I wasn't in grad school yesterday. We did disclose. It was 20 

Kate Grandbois: years. It was 20 years ago. 

Amy Wonkka: But the pieces that I remember are also very tied into, um, a typically developing sensory system too.

So even thinking about those, uh, early gestures and like, like the 16 by 16 research, right, looking at those early gestures, like pointing is also dependent on that dorsal mm-hmm. Ventral system, functioning enough that you're able to fixate on something at a distance and then use that for communication to like point to [00:40:00] that reference.

Um, so I think on top of not having a lot of deep knowledge around the development of symbolism, I, I can't think of any. And, and I'm sorry, grad school, if you did teach me this and I don't remember it, but, um, yeah, I'm, I'm not thinking of anything about how that also might look differently if somebody has a, a sensory processing difference.

Chris Russell: Well, you know what's interesting is like I'm reflecting on my, you know, my grad school and, and, um, and then like learning on the job stuff too. And, and I feel like what I learned, so I went through a program in severe and multiple disabilities, like as a teacher and then another program in blindness and visual impairment.

And I would say. Most of what I'm referring to comes from the field of deaf blindness. Um, which is interesting because it's not like it's so specific. It is so specific, but it breaks the field of deaf blindness and the, the research and literature and the field of deaf blindness is really [00:41:00] good at breaking things down to like their most deepest core.

And that's because that's where we have to go to sort of like, reach those kids, especially who are congenitally deaf blind. So, and I actually didn't learn enough about what typical development look like. Looks like I had like one class on child development, and then like, I don't, uh, you know, like I, I almost only know what atypical development looks like.

Um, but, and so I need more of that. But, um, but I would say if this is something that's interesting to you and, and to listeners, highly, highly, highly recommend. Articles written by Susan Bruce, um, B-R-U-C-E, and probably the one to start with is called Congenital Deaf Blindness and the Struggle to Symbolism, the Struggle for Symbolism, something like that.

Um, but she has a whole series of articles. You could just look, you could just go to Google Scholar and type in Bruce Deaf Blindness and you'd find a lot of stuff. She's written a ton on the development of symbolism. [00:42:00] And her and Susan Baki, Dr. Baki have articles on intentional communication acts and the connection between intentional communication acts and symbolism, including like the rate, like an actual study that suggests that as we approach 10 intentional communication acts per minute for a 10 minute period, we're approaching first words or first symbols.

They have like really cool stuff on this. And it's all, it's the entire study population, our kids with multiple disabilities, um, and deaf blindness. 

Kate Grandbois: Oh, I'm very, 

Chris Russell: very excited to read that. Like everything it's wild is awesome. 

Kate Grandbois: I'm gonna link, uh, the Google Scholar link for Susan Bruce's work. Uh, for anyone listening who would like to read a little further.

Chris Russell: She also has some really awesome stuff on, um, on, on, um, she's like the only person who has written on, um, the idea of evidence-based practices in [00:43:00] a low incidence population. And what she said about that, which I think is really cool, is, um, that we actually don't have any evidence-based practices in the field of blindness, deaf blindness, and very few even in the field of deafness and hearing loss because the population and study field are so, they're so, study groups are so small, but she said we have a whole huge.

You know, host of, um, what they call promising practices, things that we know to be tried and true and that, that's totally valid. It's just that you can't call them evidence-based practices. That doesn't mean that they're not tried and true practices, but, um, but that in a low instance field, we actually can't have evidence-based practices.

All we can have is, you know, we can build up single subject design and, and, and practice like research to practice. 

Kate Grandbois: What was the term you used for that? 

Chris Russell: Um, promising practices, 

Kate Grandbois: promising practice. I'm gonna Google [00:44:00] search that and, and list those references as well. There's just, this is just a springboard episode of 

Chris Russell: Yeah.

Yeah. So much 

Kate Grandbois: further nerdy learning. 

Chris Russell: So nerdy. 

Amy Wonkka: This is such good stuff. Um, I feel like I'm gonna leave this talk with a bunch of Google searches in hand and a bunch of articles that I wanna print out and read. Um, because all of that is, is really interesting, like the, like being able to do a deep dive on some of that symbolic representation and developing that and what that looks like.

Um, I wonder if we can shift gears a little bit and talk about high tech systems, which I feel like especially post like 2012 iPads, apps, all of that has become something that's much more available and accessible, which is wonderful, but I think sometimes we're using that as the one tool for every situation.

So maybe you can give us some tips on how we might think about some high tech supports and aided [00:45:00] symbols. 

Chris Russell: Definitely. So, um, so I think there's maybe two, two ways to talk about this. The first thing I think, which is just the, um, the foundation of what I think about high tech, um, is that as the vision, as sort of like the vision side, I don't involve myself too much other than just out of interest and, and trying to have, like, to understand it better, the decision making process between what specific high tech to use or when to start using it.

What I'm concerned with is what it looks like and um, and how it's used, how it's presented, right? Which are both visual concerns. And so what it looks like, I think the number one piece of the number one piece of advice I would give you is to be super thoughtful about, um, the, about how distinct. Symbols are [00:46:00] in relation to each other.

So I'm not, I'm not like too crazy about, oh, you have to use this symbol system or that symbol system, or you have to adapt it this way or that way. Because I think that we're talking about such individualized systems. We, we really can't use anything completely standardized with kids with CVI. A standard system as it is, is absolutely not gonna work even for a child.

In later phase three, there's gonna be some adaptation you have to make. So the adaptation is gonna be to the array, um, and to the, the actual choice of symbols or the, or the way that you adapt those symbols for the array. There are some kind of standard considerations, which are, um, spacing between symbols, black background, and the black background is not because kids with CVI need contrast, high contrast, everyone needs high contrast.

That's just universal design. The black background tends to create even more spacing between the symbols and it makes it even easier to perceive the symbols as [00:47:00] separate from each other. Spacing between symbols as much as possible. Increased spacing. Um, what you have to figure out is how much does your child absolutely need?

So from the speech perspective or a C perspective, it's always gonna be, let's get as many symbols on there as possible, right? And I don't wanna fight that. Because from the vision perspective, it's gonna be how few can we have in order for it to be visually accessible or, or actually how many can we have before making it not visually accessible?

So I'm always for, I totally understand the, um, the idea of maximizing the amount of symbols on, on the, on the array and on the display. It's about how can we do that while still including the spacing that's necessary. Um, and the distinctive use of symbols, the distinctive selection of symbols. So don't put two symbols that are mostly red right next to each other.

Eventually you're gonna run outta space. If you have like a, you know. An [00:48:00] a six by six array or something like that, you're gonna run outta space and you're gonna have two symbols that have a lot of red on them maybe. But if you do, make sure that they're separate from each other in space so that you can use both visual and sort of motor memory as a, as a tool for, for accessing them.

So those are some sort of basic design considerations is visual distinctiveness of symbols and spacing of array and maximizing the, minimizing the complexity of the array, right? Using color to, um, make things stand out, but not in a way that's overwhelming. So one of the first things I learned during this work and working with a really great speech pathologist.

Um, we were talking about how to, um, you know, make things stand out on symbols and, and I taught the speech pathologist a bunch of stuff about salient features and stuff like that. I came back a week later and they had, um, adapted all of, every symbol on the array, had a highlighted red salient feature.

And I realized, oh, no, no, no, that that doesn't work. That actually looks [00:49:00] insanely complex, right? So I was like, okay, that's not it. So, so, so what is it then? It's distinctiveness of symbols red on everything is not distinctive. That's everything looks the same, um, for that very reason. Those high contrast symbols, high contrast, you know, mayor Johnson Boardmaker symbols that are sort of marketed towards CVI are like the worst 'cause they all actually look the same and they have the weird egg man.

Um, you know, and it's very, it's very abstract, but they all, I'm 

Kate Grandbois: laughing 'cause everybody who knows a c knows the egg man. I'm not sure I've ever heard him called the Egg Man before, but as soon as he said it, I had him right in my head. Living red free now. 

Chris Russell: And my favorite is the one for like play, I think it The Egg Man with like a weird board game in front of it.

Oh yes. But well, it actually looks like a strapless dress. Take, take a look at it. It looks like the egg man's wearing a blue strapless dress. Um, oh my goodness. Complex pattern on it. 

Kate Grandbois: That's 

Chris Russell: so good. [00:50:00] Egg man. You know, like it's not that I'm gonna say it's never, nothing is never appropriate, but in general, those symbols, if you look at them, they're not distinct when they're next to each other.

And just because they have bright colors. Doesn't mean that they're appropriate because they're still complex. There are many bright colors on top of each other. That's not simple. The go one, which is just the green arrow, fine. That's very distinct. Looks good. Um, okay, so, so that's this design aspect, but the other part I think Amy, which you were hinting at, which is even more important, is the, the scaffolding aspect and the reliance on always using these systems.

There's a term that we use in the CVI world called sensory balance, and there's a lot of work on sensory balance planning. Um, Amy and I, we've talked about, um, Matt Chen's work in what's the complexity because of the, what's the complexity sequence? Um, and, and there's really great work on that. There's a good link to those materials on the pediatric [00:51:00] Cortical Visual Impairment Society website, PCs vision.

And you can find a whole bunch of Matt Teigen's stuff on there and some really good like, um, fact sheet level and, and graphics to explain what that is. But basically what we're talking about is how you know a system that may be appropriate for a student in a low complexity environment. Quiet room, calm, no extra sensory input or noise, no distractions.

Maybe a child's using an eye gaze system really, really well in a one-to-one room with the lights dimmed, with the speech pathologist with no interruptions. That same student taking that same device into a busy, you know, morning meeting or morning circle activity in the classroom, not gonna work because now there's all this extra sensory input and suddenly the complexity level goes up, the access level goes down.

And that's, that's something that's, I think it's very unique to CVI. [00:52:00] Not from an attention perspective, but from a, um, vision perspective. Things that are, that were visually accessible in one space are not visually accessible in another space. And, and it's also important to understand that that's not just environment externally, that's also environment.

Internally, the biophysical status of the child affects their visual access. The child's not feeling well. They're on medication that makes them a little drowsy. It's not just that they don't have, or they're upset or they're overstimulated. It's not just that they don't have attention to listen or participate or engage.

It's that their visual processing actually goes down. 

Amy Wonkka: I think that's so important for people to hear, um, because one of the things that I've experienced working with teams that can be really challenging to understand is like, I don't understand. He slash she can do this. Meaning like he slash she can [00:53:00] do this in this one context.

I've seen them do it a lot and all of a sudden they're not doing it. Uh, they must not be trying hard enough slash working hard enough. 

Chris Russell: Yep. Uh, 

Amy Wonkka: and, and I think along with that. I wonder if you could talk to us a little bit about if you are part of a team and you're supporting a client who has CVI, like how should we be building in alternative systems?

I'm just thinking about the example you gave about the, the calendar earlier and like, you know, we're starting off with like the actual object. Then we are trying to teach symbolism by using the actual object and it's like on a backing. Mm-hmm. Um, is there a place as we have a student who's moving through and now is maybe like an early phase three or a later phase three, and we're using a high tech system, should we be thinking about and planning for a truly multimodal a, a c system, which is incorporating these kind of like earlier pieces and, and how, how should we think about that?

What should we be asking ourselves? [00:54:00] 

Chris Russell: I think that's like the. Most important statement or question or idea that that, that, you know, what you just said is exactly the point of this whole discussion, which is that, well, first of all, we are all multimodal communicators. So, so there's no reason to shy away from or be afraid to use multiple systems.

We all use multiple systems to communicate. Um, what's unique here is that we may have to plan the use or avail, not availability. 'cause systems should always be available, but, um, we should plan the introduction or the modeling of various communication systems based on what the child's day looks like from a sensory balance planning perspective.

So you could literally take, uh, the child's schedule, you know, you could just run through the schedule. You could have, think of this as like a table with columns. So we have the time of day, the activity. Then the third column is like, how is the child impacted? In that activity from a sensory perspective, [00:55:00] how, what kinds of things happen in that activity that affect the child's sensory availability?

And then the next column is like, what systems might be appropriate for that space? And it's not that you're like taking it away, like sure. Like the high tech system is still there. It's not like you, you're never like putting it away in the closet, hopefully. Um, but it's not the one that we're targeting for expressive use in that activity.

And so that's where we may think about for an individual child, um, scaffolding systems that are, um, that are easier to access from a sensory perspective. Even low tech versions of high tech systems may be easier to deal with, right? Even like a, you know, a binder, like a board printout or communication board partner assisted scanning.

We may even, I've actually seen examples of, um. Turning off the visual display and using auditory scanning with a high tech system in a complex setting where you're [00:56:00] like, don't, don't even try to look at it. It's too much for you to look at. That's totally okay. In this setting, we're gonna listen to it instead, and we're almost gonna do like an auditory scanning thing.

In other areas, maybe even, we're focusing on motor memory, you know, like, think about like, we're not staring at the keyboard while we're typing. Um, we're building motor memory for it too. That's okay too. I think it's important to give yourself the grace to understand that not every intervention for a child with CVI has to be a visual one.

And in fact, sometimes they shouldn't be visual ones. Sometimes they should be auditory, tactile, or combination. That's what sensory balance planning is. It's looking at the child's whole day and thinking about when is vision accessible to them and when it is, what adaptations are needed, what accommodations are needed, what systems are we using when it's not.

What accommodations are needed, what systems are used, and all of that. So they're just not gonna be visual ones or they're gonna be visual with different, [00:57:00] just looking different. 

Amy Wonkka: That's super helpful. I, I wonder, this is sort of a, an odd tangent, but I'm gonna ask it anyway. Um, as we're reflecting back on that earlier symbolic learner, somebody who's just learning that symbolic communication, I feel like I learned a few years back thinking about that object-based schedule.

We're not supposed to use miniatures. And I noticed that when you were talking about making that next step to the symbolic communication, you said parts of the object. You didn't say like bring in a tiny spoon and a tiny diaper. Can you talk to us a little bit about why that is? 

Chris Russell: Really good question. So the idea, uh, on miniatures really comes from more of an ocular perspective also, because what, the reason we talk about not using miniatures intangible symbols is it is, it's based on understanding that children with visual impairment are tactile learners.

So feeling a little miniature school bus is not gonna give a good [00:58:00] impression of what the experience of being on the school bus is, and much better to use like a part of a seatbelt or a piece of like that horrible pleather that they use on school buses. Like something the child's gonna feel for CVI. It may be a miniature if the child has the ability to perceive visually what a miniature is, right?

So it's not, I wouldn't rule out the use of miniatures for CVI, but probably not gonna be very helpful for a child in phase one or early phase two who can't do that, right? So a kid in, in phase one is gonna look much more in the adaptations, gonna look much more like a kid. Who is blind because you're gonna use a combination of tactile, but you're also going to use bright colors, shiny reflective material, shine a flashlight on it, whatever.

So in phase, like in phase one, I would say probably no miniatures. Once you have, um, actually this is the dorsal ventral thing. Once you have ventral stream processing, you may be able to handle miniatures [00:59:00] from a visual perspective. That doesn't mean that you understand them from a conceptual perspective.

'cause miniatures, the concept of a miniature is actually a pretty abstract concept. Right? So, um, yeah, really good. That's a cool tangent. Yeah. 

Amy Wonkka: Thank, thank you for going on that tangent with us because I think it is, it's tricky to figure out, I mean, in this conversation it's very clear that ideally if you have a client on your caseload who has CVI, that they have some sort of vision professional on the team who you can have a dialogue with.

We talk a lot on this podcast about the importance of collaboration. I think this is one place where it is incredibly important to be getting the input from somebody who's able to, first of all tell you what phase of CVI your client is functioning in at the moment. Um, and then help you figure out as the SLP who's trying to work with a EC supports kind of what [01:00:00] is appropriate, um, in terms of the modifications and accommodations that we are working on.

Um, I guess to wrap up, I'd like to ask a bit more of bringing us back to the beginning. What about when we have that learner who's an earlier learner? They're phase one, they're phase two, and they really are pre intentional. So they're not just pre symbolic.

Um, they're using those communication behaviors and they're not really using them intentionally to communicate with their partners, their partners or just interpreting those behaviors. Do you have any tips for us when we're working with those clients? 

Chris Russell: I have like the, I have an eight hour version because this is literally my favorite topic that we haven't even discussed yet.

And I've done a huge amount of other work. So like CVI work is all here, and then I have equal amount of time and energy put into this other work on pre intentional communication and, and biobehavioral assessment of kids who are really communicating at a pre [01:01:00] intentional and reflexive level, usually because they have, um, significant complex care and complex communication needs.

And so to wrap all of that up in a very tight little bunch, um. The number one thing that we understand about pre intentional communication is that in order to advance learners from pre intentional to intentional, we have to respond consistently to whatever their pre intentional communication is in a way that is consistent and very concrete.

Right. And what we're doing in doing that is we're teaching that child that your reflexive behaviors mean something to us, and they can be used to communicate a variety of things for you. Um, the easiest things that they communicate are comfort and discomfort, because those are things that are usually pretty observable to communication partners, right?

So most classic example is a kid in a rifton chair who tenses their shoulder, curls their arms in, maybe gives a [01:02:00] facial expression or grimace, maybe COOs, or, you know, vocalizes. And if we are, if we do believe that, that's pre intentional, that it's not an intentional communication, that it's a reflexive response to discomfort.

What do we do to support that child? We come over, we put a hand on their shoulder or their back. We do something to calm them. We think about we, you know, we still use language, but we don't necessarily know if the language is reaching them or not. We're scaffolding our communication with them to convey to them, I understand that you're on uncomfortable.

Your behavior taught me that your behavior showed me that you're uncomfortable and I'm gonna do something to change the environment. And over time, if you do that consistently, and if everybody working with that child does that you're teaching the child that their behavior was the anate to the response that they got, that made them more comfortable, then they can use those behaviors or other ones that you model as intentional behaviors.

Right? And so, um, so then it's [01:03:00] just about finding out what those responses are that are reflexive. And I've actually even used heart, like in the hospital setting, kids who are at the really severe level, um, in terms of. Physical access. I've even used like heart rate and breathing and flushness of skin tone, stuff like that.

Respiration, um, as indicators of comfort and discomfort to create a protocol or an inventory of touch cues for that student touch cues are really the most concrete form of receptive communication for students with multiple disabilities that also can over time, can turn into expressive modalities for a child too.

And a touch cue is basically a consistent touch on a place on the body that's always used to convey, um, a response or to precede an action or a change in an environment. So a light touch on the shoulder or back may mean. A greeting that may [01:04:00] be, I'm here light touch on the back of the hand, and palm may mean I'm gonna take your hand to show you something.

Light touch on the hip may mean like it's time for toileting or changing light touch on the shin may mean we're gonna take on or put off or take off or put on your orthotics or shoes or something like that. So you create an inventory of touch cues, maybe start with like eight to 10 for your student.

And every single person who works with them is using those same touch cues. That's the way that we reach pre intentional learners, and that's the way that I've seen over and over again. Um, it's the, it's the most useful modality to scaffold communication for those kids. And, and partially because it's pretty easy.

It's not hard for people to get on board with this. It doesn't involve a high amount of training and you start slow and then you build it up. But you don't stop using the higher forms of communication receptively. We're still using language. We're still using tangible symbols, [01:05:00] but that's the lowest rung on the ladder of scaffolding for pre intentional communicators.

Kate Grandbois: This was incredibly helpful. We could talk to you for a thousand years and I hope that you will come back and Yeah, definitely. And finish this brilliant info. Dumping. I'm just learning so much listening to you talk. Um, I wanna say, you know, a quick thank you to. Everyone on our team who's making episodes like this possible sharing knowledge like this that is not easily available, that is under-discussed and yet incredibly critical to our work.

Um, thank you to Tegan Ahern, our project manager and production manager who helps to make this episode, uh, who helps keep our project alive, really. Um, a thank you to Dr. Anna Paula Mui, who makes our ashes CEUs possible. Darren Lopez, our production assistant who creates all of our course materials and web production.

Tracy Callahan and Dr. Mary Beth and Dr. Mary Beth Schmidt, who [01:06:00] facilitate our peer review process, our advisory board who engages with our content and elevates our quality. And last but not least, Chris Russell, thank you so much for being here today. This was really a, a mind opening and mind blowing conversation.

We really appreciate your time. 

Chris Russell: Thank you so much Kate and Amy, and thank you to Tegan as well for having me. I'm going to email you guys like a whole bunch of materials too. Hooray. So, um, then you can, you can share them with, um, with listeners as well. 

Kate Grandbois: Alright, that's wonderful. Thank you so much. 

Chris Russell: Thank you again.

Outro

Announcer: Thank you so much for joining us in today's episode, as always, you can use this episode for ASHA CEUs. You can also potentially use this episode for other credits, depending on the regulations of your governing body. To determine if this episode will count towards professional development in your area of study.

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thank you so much for joining us and we hope to welcome you back here again soon.

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