 And I'm really grateful to have you all here. I am really grateful to have Marin to present with me. And we're going to talk about kids with complex communication needs and cortical cerebral visual impairment. What's the complexity? OK, so can you guys hear me OK? I didn't test my mic. I should have I had like 10 minutes. So I had the opportunity of taking a course that was on the subject of CVI. And the instructor of the course used this example to explain how somebody with CVI may not always understand what is being shown to them. So the story is that he showed his student a photograph of a man walking a goat on a leash, as you see here as the example. This isn't the actual photograph. It was an actual photograph. And he said to the student, tell me what you see. And the student said, I see a man walking a dog. And it started this man thinking, this teacher, thinking about, oh, my gosh, they're not always able to see what we see. And they're not always able to interpret, even though they're looking. And it appears that they're seeing. And so I was using this example with an SLP. And I was telling this story. And she said, well, that's a really funny story, because I would have thought that the student didn't have the word for goat. And so they substituted the word for dog. And I went, oh, OK. Which hat are you wearing? And which lens are you looking through? And so it's just such a great example of why we are here today. I can look through the list of participants. And I know that we're well-represented in vision and in AAC and SLP, because we're trying to sort this out. So the issue then, to follow up on that, Maren really becomes, vision our language? How can we separate it? We can't. It's definitely an infinite loop that language impacts vision. Vision impacts language. And we, as professionals, need to step out of our silos, open up our windows, get into each other's cars, and work together to tease this relation apart. And the way that this webinar came together today is that Maren and I have been attempting to do exactly that. I think I have now a TBI who's also a budding AAC expert, which is fantastic. I am not a budding vision expert, but maybe someday we'll be able to join that crew. So this is the issue. How can we separate it? We can't. So who are we talking about? Today we're talking about kids with complex communication needs, and we're going to explain to those maybe on the vision end who that is, and kids with visual and cortical impairments. And as Maren and I were reading the chapter by Sarah Blackstone and Christine Roman, they say, and we clearly understand that the ideologies associated with cortical visual impairment and complex communication needs are often the same. So Maren, I know you have some numbers about. Well, it's not from that book. But the number can be as high as 80% in other Gordon Dutton has. I don't think it's a moving target number, but it's been quoted as high as 80%. And so he's saying what I have it here. In this textbook, The Root Lidge Handbook, he says we should rule it in. We should assume that vision loss is or vision perceptual challenges are there rather than that they're not there, especially if the brain's impacted in any way. And I know in my experience, and I as one of my lovely young AAC people told me was the dinosaur of AAC, my experience is we used to just know that there was something wrong, but we didn't have a first clue of what it was. I think we call them CPIs or something. So it really is any time there is some kind of miss wiring of the brain, Dutton's and others say let's rule it in. Let's not assume that they can see the way we think they're seeing. So today, here, we're talking about kids with complex, as I said, kids with CVI and kids with CCN. And we're trying to hit the kids in the middle of these two, so this Venn diagram in the middle, I couldn't find one that probably overlaps as much as it needs to. Yes, there are kids with complex communication needs that may have perfectly intact vision and can carry on in our world that is primarily visual. And there are kids with CVI who are talkers and don't need AAC, but we're finding out more and more that the overlap is significant. So, Karen. OK, so the kids that we're talking about with CVI, I insisted that we rule in vision needs as a carryover, because really and truly, that's how we're trained. So as a teacher that visually impaired at CVI, we've been well-trained to work with kids with ocular visual impairment. Instead, as we now know and as we're discovering once you graduate, most of the kids, 50% or more, up to 70% of your case load is going to be kids with brain-based visual impairment. And then I write in there sometimes in addition to an ocular visual impairment. So what do you do when there's both? How do you sort that out? Yes, Kathy. What's an ocular vision impairment? So ocular meeting eyes, eye-based visual impairment versus brain-based visual impairment. One of my favorite analogies, again, it's Matt Teigen, the guy with the man in the goat walking the goat, is he likens the eyes to a USB stick and the brain to the computer. So you need both in order for the message to get through to download the actual data that's there. You need both to be in perfect working order. So today in North America, we are calling that brain-based visual impairment. We typically call it cortical visual impairment or CVI for short. So, sorry, there is a question from the chat about the statistic of the 80%. So 80% of the CCN population have CVI. They wanted more clarification on the statistic. Fair enough. I think really what that is is 80% of kids that have some kind of impact on their brain, some kind of brain, so not, that's not 80% of kids with complex communication needs. No, that's it. I think things that I've read would suggest somewhere between 37 and 50%, that would be out of the article from Erickson and Geist 2017, but I think the 80% that Marin is talking about is kids that have some kind of challenge that impacts the development of their brain. So it could be cerebral palsy, it could be epilepsy, it could be a multitude of things that impact the developing brain. We need to, as he puts it in, Marin says, rule in the possibility of cortical visual impairment that they won't be processing, that the perception will be off, right? So it's not that, your great question, it's not that 80% of kids with complex communication needs have cortical visual impairment, although gosh, I don't think we know to tell you the honest truth. And that's why the number is a moving target. And so I think 80% is one of the numbers that I've seen and my experience tells me that that's probably a fairly accurate number because as soon as there's a neurological impact of any kind, the visual system is diffusely spread throughout the brain. So even if it's something that impacts attention, visual attention is needed in order to make the whole thing, like everything needs to go perfectly well. This is when I'm really starting to wrap my brain around and if it doesn't, then we should look at visual perception and processing and assume that it's probably not gone well until we can rule it out, right? And that's why we need to work together is to try and figure that out. That's what I would say, good question about that. Indeed. So the next slide I put up kind of talks about NVI, Neurological Visual Impairment, we just used that word brain-based versus CVI, Cortical Visual Impairment, why make the distinction? I think we're really trying, in the vision world, we're really trying to wrap our brains around those two terms, when to use them, why to use them, why are they interchangeable? Christine Roman, the textbook that's more red and orange in color, she would say they're not interchangeable terms and I would agree with her. She herself in this textbook says that CVI, as she defines it with the CVI range, which we'll get into a little further in the talk, is a subset of Neurological Visual Impairment of this broader cerebral brain-based visual impairment. So we're kind of talking about all these kids generally today, although we are gonna use the CVI range to talk more specifically because it really is the best educational assessment tool we have to date right now that we're able to use. So that's why just to kind of hopefully clear up some of the terms around this topic. So a little bit about ocular visual impairment versus cortical visual impairment. So in ocular visual impairment, as we said, the visual impairment is due to a disease or trauma in the eye. It's easier to diagnose. Ophthalmologists have an amazing handle on this. It's easier to assess. We use the low vision would be 20 over 70. That's an acuity number. 20 over 20 would be typical vision. So 20 over 70, when you see these numbers, it means that somebody that can see at 70 feet really clearly that same person with 20 over 70 would need to be at 20 feet to see with the same acuity. Yes? And that is a vision that has been corrected. Yes, best correction. So glasses on everything that we can do to make the person be able to see that so as good as it's going to get. And the reason I'm giving you these numbers is because still to date, these are numbers that in some places are numbers that are required to activate service. So if they don't have low vision of 20 over 70 there are significant field loss. So down to 10% tunnel vision of their visual field, they don't qualify for vision services according to certain, and that's happening in Alberta. There's certain school divisions that will say no, don't qualify. But if we flip it over to brain-based visual impairment, some of these kids have 2020 acuity. So I'm sharing these acuity numbers with you to say, is there a case for ruling these kids in and having a TVI involved? I'm saying there is, we need to work. If you're in a region where that's not a possibility, we need to, we should talk about how we can try and explain the situation to the people that are making those decisions. Legal blindness, as I was explaining the 20 over 70, legal blindness is even more so. So what somebody at 200 feet can see with good resolution and clarity, that person would need to be at 20 feet. Sometimes these people are considered blind. They may be using Braille for literacy. Sometimes they're using both. That's a dual media user print and Braille. Often these kids are single sensory impairment, but not always. More frequently than not. So this is kind of who we were really well trained to work with and teach and support. Flip it over to the other side, ocular impairment on the left, CVI on the right. Now we're talking about the visual impairments happen in the brain. It's often undiagnosed or it's diagnosed very late. It often accompanies other physical cognitive challenges, motor challenges, communication challenges, and it can be quite difficult to accurately assess. So really different pictures in terms of trying to understand what the vision person's role is and what they're trying to navigate. So again, I say students often have both. So the eyes are damaged in some way or they're not lined up or something's going on with the eyes, so the picture coming in is fuzzy and then the brain's trying to interpret it, so that makes it additionally challenging. CVI, this is important statistics. CVI is now the leading cause of visual impairment in the developed world. So as we've seen in the last 15, 20 years, the ocular visual impairments, eye-based visual impairments have gone down, down, down because medical science has done such a great job of improving our access to technology and improving our access to surgeries, these kinds of things. We're doing a great job of treating preventable blindness and on the flip side of things, medical science has made it such that babies who are born extremely preterm, babies who have massive brain injuries, complex disabilities, these kinds of things, their survivor rate is going up, up, up. So we're kind of seeing this huge shift in the population of kids that we are serving. Dutton classifies, oh, this isn't, this isn't a Dutton one, but the reasons are here on the screen about what's happening with these kids where there's all these increases of complexity. That's, and you guys are seeing that in the schools, where all of us, teachers, all these kids are showing up and they're a lot more complex than they ever were before. Part of that is that those kids weren't in the schools before, if I'm true. So now we're gonna talk a little bit about for probably most of the folks who've been on the CCN PLC have heard this before, but we're gonna do a little review of who our kids with complex communication needs. They are the kids that need assistive technologies and augmented and alternative communication of some ilk to support their communication and language development, the definition that we have in Alberta that really honestly I pulled from an article from Australia because I think it made the most sense. They're unable to communicate effectively using speech alone. So these kids, youth and adults may have some speech but it's not gonna be enough to let them get through their daily lives and be functional. They and their communication partners and this is gonna be hit on over and over. This is not something that just is the issue with the child. The communication partners are in huge, have to be in sync and have to have a huge role in supporting kids with complex communication needs. And then when you think about on top of it, if they have vision issues, there's another layer of complexity for the communication partners. So everyone benefits, everyone needs to use and benefits from an augmented and alternative communication. I'm gonna get into what that is in a second. I've put here, hearing limitation is not an, I didn't put, it's in the article. Hearing limitation is not the primary cause of complex communication needs. And I, for those of you who heard this before, I apologize, but one of the things that happened when we first started to ask across Alberta who how many kids with complex communication needs do you have, people would report on kids who are deaf and hard of hearing. And certainly they have different needs for communication language, but they're not complex in that mostly they need sign language. So our kids have another level of complexity. This is one of my favorite authors, Teresa Iacono, who talks about the fact that as a complexity increases, so does the complexity of communication and the complexity in finding that alternative system. People with disabilities really have to rely on the skills of others. And I think that's part of the big message that we have for you today, is that the skills need to be broader than just an SLP, broader than SLPs and OTs that we need to bring lots of other people in the conversation as, and that's Teresa Iacono says, the thing about people with disabilities is their challenges come, tend to come in multiples. So given that a little quick overview of what is AAC, I took this from the ISAC website. So this is a little shout out to ISAC and ISAC Canada. And if those of you who are on this webinar haven't joined ISAC Canada, you should because there's lots of great support and information there. So really what alternative AAC is about the multiple ways that communication can happen. It can be speech, it can be text, ingest your special expression sign. We all use multiple forms of communication and I think that's really important is this is not just this unique thing that happens for those kids with disabilities. We all do it as I'm doing it right now, showing you in a different way. But certainly for some of our kids natural speech and the natural modes are not sufficient to meet their requirements. We need to make sure that our goal with AAC is to make sure that a person is understood, their autonomous intent is understood and the form is less important. It doesn't matter how it happens as long as it can happen. So AAC can be non-aided, which means you use the speech that your body has. So it can be the speech that you have, manual sign. Just happy talking. Hang on, I'm gonna try and whoever just came in, if you can mute yourself, please then I can continue to talk. Thank you, because you're kind of loud. All right, there. And then aided communication, which is probably the most important or what we're gonna mostly talk about today, although there is really an important role for potential role for non-aided communication as well. All right guys, who are these people? I'm gonna mute you. Irene. Okay, are you muted? No, not muted yet. All right, this is just another way to say what I just said. I'm gonna move forward on this. So why do we need to think about augmented of an alternative communication? Communication happens across our lives in every aspect of our life. In home, in school, I know many of us are focused on what happens in school, but there's lots of environments throughout everyone's life that we need to be thinking about this. For people with disabilities, including the kids that we're talking about today, maybe most specifically, the consequences of not being able to speak or be understood are far reaching and often serious. My own research has, sadly, I guess unearthed, instances where students, people, children, have been in the situation of being, I will say abused, not physically or sexually, but emotionally, and can you imagine, I always wanna say this to people, can you imagine being a mom and sending your child to be somewhere all day long where they can't tell you what happened to them that day? So these needs are urgent, and the more complex it is, perhaps the more urgent it is because we need to think about how they can communicate in all these alternative ways. AAC, for me, this is the kicker, is a developmental pathway to communication and language development. Language is the foundation of learning. We need to have kids that have receptive language and ways to help them understand the world so they need symbolic representation to understand, to say what's gonna happen to me next, to give me meanings to help me learn, they need to be able to express, not only their choices and direct others, but as their thoughts and feelings and emotions, and ask and answer questions, particularly ask. We take so for granted the ability of our young kids in school to ask questions. When we have these kids with this complexity, how can we support them to have all of these functions of language? It's really critical. And our challenge for even for kids who don't have CCN and CVI, expressive communication abilities are alarmingly small, and I would say inadequate. So it's a big issue in the world of CCN generally. And then when we think about CVI on top of it, it becomes even more complex. Language doesn't grow out of silence. Kids need to speak, which means for all of our kids, we need a robust vocabulary. One of the things that I think happens often, or I've seen often happen for kids that have suspected lack of intellectual ability, challenges with vision as well as with communication, is they get this very small number of symbols or number of language set that they can get access to to use and even get access to to model. I've seen lots of situations where people say, well, let's just start with poor symbols because that's really all they can handle. And I have to use the example of my grandson because he's little. If Logan, when he was not being able to talk with me with very many words, if I said, well, he can only use very simple words. So I probably shouldn't speak to him with more than about eight because he's not really communicating yet. What words would I pick? And if I pick such a small array of words, how would that potentially impact his development in all of these areas? So the AC field generally is saying, we need to be thinking about giving kids access to robust language systems. Kater Hernd says a hundred. I think that's small, actually. The other thing about kids with CVI, kids with, particularly about CVI who have AC, is they, even if we gave them these large systems, how can they actually explore them and how can they learn that vocabulary that's there? So we need to be intentional about not only just providing them with systems that are more robust, but we need to be actually attentive, excuse me, to how we can provide meaningful access to those. The other thing that's really a challenge for our kids with vision is this whole notion of joint attention. And anyone who's heard me talk about AC and language development before knows that I talk about the privilege of the point. Thomas Salo, who is a linguist who I will talk about a little bit later, talks about this ability of the human being to point so that we can get joint attention as being foundational to the whole idea of getting language. So for our kids with CCN plus CVI, if their vision isn't working and they can't follow that point or don't even notice that we're pointing it all, they're hugely at risk of developing language receptively and expressively. So I'm gonna just go through a couple of myths before we get to how are we gonna actually unpack this? And I know I'm going really fast because we have lots to say. So these are some myths and misconceptions that are common, I think, in our world or things that I often hear and things that have actually come up in other talks that I've heard, which is that we need to start with concrete, things before we get to abstract language, that there's a symbol hierarchy, that the high contrast symbols that you might see on Boardmaker and other places are the CVI symbols, and then the big myth that we'll hit at the end, which is one size kind of fits no one. So this idea that we should start with real objects, then go to photographs, then introduce a symbol. And I think kind of, unfortunately, it came from Matt, Tijan's work, and Matt was talking about developing vision, not about developing language. And so if we think about this, we need to, well, maybe I should say this, yeah, we'll do it this way. We need to think about this, we need to think about the fact that language is de facto symbolic and abstract. We can't have language unless we can have a symbolic representation of a thing. So the word chair has nothing to do with chairness, it's just the word chair. And when we're talking with kids and helping them learn about their vision to say that this is a chair and this is a chair and this is a picture of a chair and this is, we have that symbolic representation. The challenge for our kids is that they won't have the, potentially won't have the ability to give you that chair word back, but maybe I'll put it this way. My point is, is that if we think about the symbol hierarchy, we are reducing language to something that is very concrete and very specific. And if we think about languages, language can't be specific. I'll give you maybe a better example than what I put here. There was a child who I was, well, I was consulting to the team and he had to pick a photograph because they said, no, no, no, he's not ready for symbols. He needs the actual photograph. So he had a photograph of the gym in his school that he recognized as meaning that he was going to go to the gym. So that's good, okay. So when he moved to another school, suddenly that photograph didn't work for him because it meant the gym at the other school. It was specific to that gym because photographs and objects tend to be specific. Language can't be specific. So this symbol hierarchy of teaching, here's this chair and then here's a little representation of a chair and then here's a symbol of chair. Number one, I would argue is not really teaching anything about, well, maybe it's teaching something about chairness, but number two, for our kids with complex communication needs and CBI and often intellectual disabilities, they don't have time to learn the word chair and multiple iterations. They don't, we can teach them the vision of this, but to learn about the word, why would we teach the word over and over in multiple ways? We need to teach them the abstraction, the symbol for that. Here's another example for me that really I struggle with and I did this, did this, did this. So what about eat? I used to give kids a spoon to represent the word eat. Okay, so if I give the kid a spoon to represent the word eat, what am I gonna say when I have a spoon? This is a spoon, this isn't eat, this is a spoon. So the minute that we try to make something too concrete, we've missed in my people not so humble opinion, we've missed idea of what language is all about and then we've locked kids into trying, okay, well, if this is to eat here, then what is spoonness? So anyway, okay, enough, off the soapbox. Research is showing that one of the biggest challenges and this is Karen Erickson, many of you have heard her is the idea that we have to start with real concrete reference for kids with significant disabilities and CVI and CCN. The research is not showing that. The research says that we can start with things that are much more abstract and those things that are much more abstract are also harder to put into some kind of iconic symbol, I suppose. The other research that is really important that's just out is that kids with, now this is not about kids with CVI, this is about kids with intellectual disabilities, but it does have impact, I believe, on what we're doing with our kids with complex communication needs and cortical visual impairments, is that iconicity, that means how well the symbol represents the thing that we're talking about really is not that important of a factor. So for example, these are symbols here, they're pre-max symbols. They have, I would be surprised if any of you could tell me what symbols those represent, but they, and maybe I'll go to this, kids need to learn what symbols mean, whether they're oral symbols, like the word chair or eat, whether they're graphic symbols, we need to, whether they're tactile symbols, we need to teach those symbols. And again, I would argue to make them too specific is going to get in the way, potentially, of kids learning language. So kids learning language by actively investigating, they need guidance from a language environment that's going to support them, and that's the truth for all kids, including kids with CCN and CVI. They need to be interacting and observing adults and other people who are using their systems, and we'll talk more about that as we get into some ideas of what might work. And then this last thing, that high contrast symbols are for kids with CVI, maybe, and Maren, do you wanna talk about your kiddo with the black and white symbols? Sure, yeah, so one of the characteristics on the CVI range is color, and for a lot of kids who fit the subset of that characteristic, color seems to help the child see. And so we use high contrast colors and symbols and these kinds of things, but it is possible and it has happened in my practice, for sure, that there are students out there who don't perceive color at all, and they perceive only in black and white, and therefore to say high contrast symbols for somebody with CVI in this child has even a diagnosis of CVI, doesn't make sense. So again, we can't say high contrast, oh yeah, CVI, here's the symbols for CVI, but that's not a thing. It should be based on what the child is showing us, what the child is telling us, rather than just assuming. So I'm gonna pass it over to Marin in a second, but I think the other point is really important that kids not only need language they can understand, so a lot of our kids we sort of assume that they're gonna understand our oral language and most of them probably will, but they also need to have language that they can use, which is something I talked about a little bit earlier. This is Michael Tomsello, I said, talked about him earlier that he's one of the more recent thinkers in the world of psycholinguistics and language and psychology, and he's saying in order to really learn language, you have to use it, so we need to give access to all of our kids, including kids with complex communication needs and CVI, not only input, but other ability to output meaningfully. Kids with complex communication needs, again to follow that up, require consistent and predictable opportunities to experience and manipulate language, not just passive recipients of language, and it needs to be built on, but not dependent on engaging vision, so we need to be thinking about vision as part of the process, but it's not the only way that kids are going to be able to access language, even though in the world of AAC, many of our practices tend to privilege visual representation of language. We need to be thinking about lots of ways when vision isn't working the way it should to be continued. Okay, so where do we start? So I just wanted to kind of, before I even start into this piece about vision and gathering information and these kinds of things, I wanted to kind of just say why the heck I got dragged down this back alley of AAC anyway. Kathy partially started dragging me down it, but then I realized that was supposed to be in the alley. And then here's how that happened, is three, four years ago I had the opportunity and many of you have had the opportunity to hear Linda Burkhart speak, and she had all these videos of these kids and using communication systems that were somewhat visual in nature, but supported with auditory and these kinds of things, and I just feel like she stood up and called me out and said, those are your kids too, you better get with the program. So that was kind of the start of my journey into this world of AAC and me trying to really understand how it all fits together, how does language develop and what does vision have to do with that and what about the motor skills? And I'm still, Kathy said, I'm still trying to figure this out. I'm gonna begin to remind about this every single day, right before we got on the call with you guys I was calling Kathy saying, okay, what do I do now? What do I do now? Because these kids baffle me on a daily basis. So from my perspective as a vision person, I am gonna start through that lens because that's the hat that I wear, that's my lens. And so I start by being a keen observer and I start gathering information. I try to do a really thorough review of medical information because the etiology with lots of these kids matters. Sometimes I'm on the phone with a parent. Sometimes if it's really mild, like something's going on, but I don't know what and there's nothing in the file, I'll get on the call with the parent and 45 minutes into the conversation, the parent will finally say, oh yeah, there was that one time that they stopped breathing and they had this hypoxic incident for X amount of minutes. Okay, can that impact vision? Yes, that can impact vision. And then it almost affirms why I'm seeing what I'm seeing. So I feel like that's a really important place to start. Almost giving you permission to be on the team and continue exploring that journey. So that part matters. The collaboration with family, team members, gathering information via interview, observation, direct assessment, all of that stuff is really, really important because functional vision assessment, I wrote potentially, sometimes the tools that we have, if the child doesn't have oral language, we don't know. Like I have my little eye chart, but if they can't tell me what they see, I don't know. So I'm gonna have to turn into this. It's kind of like you turn into the Sherlock Holmes role instead of a lot of direct assessment. It's a lot of this informal, indirect kind of assessment, which is uncomfortable because that really wasn't how we were trained. So I wrote down, we should be thinking about learning media or sensory assessment. That's me trying to figure out what's the best way to get information into this child and what's gonna be the best way for them to then express that information. CVI range assessment, that's gonna be the next thing we talk about because like I said, it is the best educational assessment tool we have on access to right now. And what's the complexity framework? We've referenced his name a few times, that's Matt Tegen's work. If you wanna know more about that, you can access a whole chapter on that in the advanced principles book that Christine wrote. And really what Matt does so well in that assessment is he really guides you through thinking about the environments and thinking about the tasks and thinking about the threshold abilities of the child so that you're trying to balance the school day in terms of the complexity of the demands of the environment and the tasks. So it's a great, great, great chapter if you're interested in knowing more about that. So the CVI range, I need Banna. I don't have, I'm not running in the show. Maybe I am in the show. No, no, I'm not. Okay, so the CVI range is a tool developed by Dr. Christine Roman Lanzi. She was just here, she's been in Alberta a few times. She's written three textbooks now on the subject. So she truly is the North American expert on the topic. She's assessed thousands of kids at this point and her work was actually based on the work of Dr. James Jan as a Canadian. And so this is going back into the late 80s, early 90s where they were starting to look at, you know, a lot of these kids have these 10 characteristics that they all kind of seem to present with. So she took those 10 characteristics and she put them on into an assessment tool and she came up with a range. And so I like to use this tool because it helps give us a starting point that's pretty specific around these characteristics and then it helps us map out progress on the range. So one of the things I haven't said yet is one of the neatest things about CVI and one of the, I think probably the reason I'm so attracted to it in the first place is because if we can target and make target scales and make the appropriate accommodations, we should see progress. We should expect to see progress in the vision abilities of these students and often that is the case. You know, I've met a kindergarten student and assessed them on the range at a five, so about halfway and journeyed with them for many years and gotten them up to like an eight or a nine on the range. So we see progress with these students. They can learn to use their vision. That's pretty magical. So that range runs from one to 10 or zero to 10. Very few people are zero. That would mean not responding visually to anything at all ever. 10 being fully resolved, typical vision. So really we don't use either one of those numbers, but between one and nine something. Earlier in the range, the lower the number is the more challenges the student has with their vision. So in phase one, that would be a zero to three on the range. That means the student is essentially learning to see, learning to look, learning to access their vision. Phase two, I think I do get into the actual phases, but there's the, well, I'll say more about the phases in a minute. Go to the characteristics, Kathy. These are the 10 characteristics that in which it was based. Color preference, so we just talked about that with those CVI symbols. For some kids, but not all. Sometimes highly saturated colors or objects will help the student orient towards a visual stimulus. Movement can be another thing that helps students see. So it can be movement that's happening within, maybe it's just you're moving the object, object getting them to look. If they're in a wheelchair, sometimes their heads go up when they're moving in their wheelchair. Some kids are, if they're ambulatory, they're runners down the hallway and they seem to run everywhere they go and often they're more visually alert when they're doing that. Latency describes the time delay between when you present an object and the time they take to look. By the way, one of the reasons why I'm sharing these characteristics with you, because I'm well aware that there's SLPs on here who are working with kids who don't have a vision consultant on the team. And if you see any of the stuff, you should call your vision consultant. So I'm saying it because I want you to know a little bit about this so you know when to refer. So latency is that delay. So you present the object or you show them something and they don't look right away. There's a delay. Visual field preferences, that seems to be, they're not always able to access information in the full scale of visual field as you and I would. So sometimes there's a preferred field. Sometimes they don't have access to lower fields. It can look different. Need for light. So sometimes they are light gazing. So staring up at the lights or fixated on fans or like things overhead, non-purposeful gaze is another thing that you might see. So their eyes just kind of staring off into space. Something to look for. Difficulty with distance viewing. Usually how this progresses is lower on the range. They need things in really close range. And as their vision improves, you can move things farther and farther away from them and they will respond. Atypical visual reflexes, that's something that we don't, there's nothing to fix about that or no strategies, but you can check by tapping the student on their nose and they should blink or move their hands towards their face and they will blink also. So that's something to look for or to check. Difficulty with visual novelty, that refers to the fact that the student needs to see something more than once before they can hook into it. So they're more likely to respond to things that are familiar to them and to things that are brand new. This sometimes comes across as they don't like anything. So that student I just referred to who I was a five one amendment in kindergarten, one of the first conversations that we had was, I said, what is he like? And they said, he doesn't like anything. He just throws it over his shoulder. I said, well, so what do you do? And they said, well, we just keep trying new things. I said, well, what if we just stop trying new things and just picked a bin and continued to try with those objects and sure enough, eventually 50, 60 times later, he kind of looked at it for the first time. So that's what that could look like. Absence of visually guided reach, this has to do with the vision system and the motor system, having trouble working together in an integrated way. So they will look at something and then they will look away and then they will reach forward or activate their motor pathway. And as they progress in the range, those two things become more and more integrated. And then the last one is difficulties with visual complexity. So there's four ways that that could show up. It could be complexity of the array. So that's, you know, I'm looking at my office here. There's lots of stuff on the bulletin board. That's a lot of complexity to take in. Complexity of object would be the thing, the object against whatever background would be the array, but the object itself, complexity, the faces are something that we look at. So their ability to make eye to eye contact and recognize faces and then the sensory environment. So that has to do with all of the sensory information around them. Those are the 10 characteristics. And then as I was saying about the phases on the next screen, that's great. So if you do the CVI range assessment and the number comes out as between a zero and a three, we would say they're in phase one. And what we're doing there is we're building visual behavior. So students are working on establishing consistent visual response. And they're really only able to use their vision well in a very controlled situation. And it's rare even to see a student in phase one look directly at a target. So it's more peripheral vision. So the objects are there and you can tell that the students aware that the object is there, but there's not necessarily this really good eye to object contact. And then Kathy, the AAC implications, I'll leave that one to you. Or do you want me to do it? Are you muted? She's muted. I'll do it. So the AAC implications of that are that we will probably need to rely on alternative sensory information, mostly that will be, I would suggest, at this paint point auditory. So unless, and we're going to get to this, again, the challenges are multiple. And I'm sorry, we're going a little bit in sequence, but we also need to know about what these kids hear. But for many of our kids in this group, they are going to be able to process auditory information better than visual information. So we need to be thinking about auditory, which might be auditory scanning. If we get to the end of the talk, I'll show you some examples of that, that they're going to need their language presented to them in an auditory fashion, not just a visual fashion, sometimes auditory and factual together. Although we've got very limited opportunities really for good, tactical information for the multitude of things that we talk about. Backlighting, there's a lot of support for the idea that technology can help these kids to see. So providing AAC supports on an iPad or on a computer, which it has backlighting, with auditory support can be really helpful. And we also need to make sure that we don't, again, don't let their visual abilities get in the way of their exposure to language. And we're not even talking about literacy, do you think that's not the whole talk, but language is the foundation of literacy. So we need to make sure that they get to use their vision, but we need to make sure that they're learning language and getting access to language as they do it. And again, I'm just going to highlight that it's probably auditory with perhaps some factual. Karen? Yeah, definitely. So phase two, if the score comes out between a three plus and a seven, we would say the student is in phase two on the range and phase two, you're seeing more eye-to-object contact. Vision is becoming more predictable, more reliable. According to Dr. Roman's range, this is when it would be more appropriate to introduce 2D images with backlighting if you're around a five on the range. Again, it depends on the kid. Sometimes we would be, Linda Burkhart said this, I think it's brilliant. We've used some pod books with kids that are one symbol per page. I've used them with kids in phase one. You're providing the one symbol per page, not backlight just on a paper copy to a student in phase one with the auditory scanning component. And she said, it's like it gives them the knowledge or the cue that we're using. We're going to use this thing now. We're going to tuck pod. It's a visual cue, even if they can't interpret it, even if they can't even, like it's like, oh, here's this bright shiny thing. Now we're talking pod. So I think that's, there's no harm in definitely pairing with that symbol, especially in those earlier numbers. So don't be afraid of that, but know that if you're doing that exclusively and thinking vision is it, that's probably not a good idea. So that's just my two cents on that. Well, and that sort of goes, they may or may not be able to discriminate those two D symbols or pictures. So we need to be thinking about making sure they have auditory support and the complexity of the way. And again, I'm going to give some examples. I'm a little afraid that we're going to run out of time that the Marin's example is really good that Linda's, and this sadly, this is not commercially available yet, but a lot of the alternative access pod systems have the complexity of the array reduced, but still we have a deep and meaningful access to language. So we need to make sure that we have auditory and tactual to some degree and maybe starting to introduce the possibility that they can use whatever vision they have to start to orient to the fact that, okay, now I'm expected to listen to the auditory scan or now I'm expected to give some kind of response when they're giving me these choices to listen or this list to listen to. In phase three, so seven plus, now the student is developing visual curiosity. So it used to be such that that once a student was in phase three, they were kind of good to go. They're using their vision, showing visual curiosity, my job here is done. Matt Tegen's work that we've been referencing kind of brought to the forefront that just because they're looking at something doesn't mean they're accurately interpreting, that's the man in the goat. It turns out that the biggest functional implication of students in phase three is complexity. So the example, I just saw a little guy today, he's three years old and he's doing lots of vision stuff. I showed him, he's definitely in phase three. He looked, he touched the iPad, these kinds of things. I put a complex visual array in front of him and his eyes flipped up to the ceiling. Just a perfect example, right? What do we do with AAC systems? Shove the complex, like he just, he wasn't gonna go there. So I was like, okay, so we need to figure that out, right? So that's a longer conversation, but that's what it looks like. On the other hand, I also am gonna bring in another example that we had where we had a little guy who he had the go talk with four symbols per page who wasn't paying any attention at all. And then all of a sudden he brought a lamp system in and he was right there with us. So this whole thing is so messy. It's really following the lead of the child rather than thinking about what the, so I'm gonna just skip past a whole bunch of slides here because we can talk about this another time, but part of the documentation is we also really need to understand how that child is currently communicating. And here are some tools, blah, blah, blah, blah, blah that we can use. I'll send these slides out if people haven't seen them, that's just fine. We need potentially use the communication matrix, we need to use the pragmatics profile. How are they currently communicating in all the multimodal ways? And then how can we respond back because that's gonna be part of being good communication partners. We also need to understand in all of these kiddos, we need the OTs and the BTs to help us. So it's not just about SLPs and AAC professionals, it's not just about vision professionals, it's also about the other people who can help us understand their motor abilities. It's a very different thing if a child can point and reach in touch than if a child is in the man that the kid that you and I were talking about today who has very limited control over his body. How do we provide an access point for that child? And then there's the whole other issue of sensory challenges. So guys, in an hour, we're not gonna be able to touch on this. What I just really need us to think about is that it is more than just the SLP. The complexity is that most of our AAC systems rely heavily on vision. Even non-aided AAC sign and gesture relies heavily on vision. So we're gonna end with just a couple of ideas of some alternatives. We've alluded to them already, but we're gonna hit them again, some ideas. So one is partner-assisted auditory scanning. This is the pod approach. When you're doing partner-assisted auditory scanning, what you're doing is going through an array of vocabulary. Well, I'm just gonna show you. So bear with me while we do a little bit. I know we're running late on time, but I think this will explain it better than... So can you see the video, Naren? I can see it's gonna have a start, yeah, but yeah. There's nothing to say. Quick chat, something's wrong, I think it's... I want, let's go, do something. I'm asking a question. I wanna show you something. I'm telling a story, telling you something. I have an idea, let's pretend. I'm telling you something. You're doing something. I'm telling you something. Okay, that's all I'm gonna show you because we're running out of time. But the point there that I want to make is that this mom is running, it's a pod. And so the auditory scan and the branching is consistent and regular. So the child can wait, they can hear it. This is the category, these are the branches. Not unlike many of our AAC systems, but it's privileging that auditory component. So following these branches consistently lets the child listen and say, yes, that's the one I want. There's more to this than that. There's all the things that we did last year, the stepping stones to switch access. But the point of auditory scanning is if we're gonna develop language in the kids, it's not just giving them random lists of auditory things to scan, it's giving them a well-constructed, robust language system that they can hear people using and modeling and that they can then start to understand, learn, and predict what it is that they want to say. Hopefully we will have more to say about this very soon, but it's one of the really, I think, important things that we think about with our kids with complex communication needs and CVI is that we need to think about using the auditory modality. The other thing, Marin talked about this. A few of us got together and talked about this whole issue of CVI and kids with complex communication needs. And we said, well, we need to stop talking about high contrast symbols and we need to start talking about symbols that are reduced in complexity and high in saturated color. So we need to potentially reduce the complexity of the array. This is the book that Marin was talking about over here that had one symbol that said, yeah, now we're gonna be using your auditory scanning book. So we're gonna be doing, we're gonna give you an opportunity to say something. So they may not recognize that symbol. They may not even be able to interpret the symbol specifically, but remember, language is abstract. The language that they may be getting there is, oh, it's time to talk. And so, but maybe they're gonna, over time, learn more about what that means. And then using color, the other array is relatively reduced but the colors maybe will help to orientate kids to what it is that we're talking to them about and what it is that they might wanna say. So thinking about using these kinds of things. Marin, do you wanna say anything else about that? I just wanted to add in this book that you have on the right with the multiple symbols. That looks like a book where you can tear off some of the symbols too. So I mean, there's ways of getting around this, right? So if you really wanna teach the symbols, you can tear it right off, isolate it on a black background and try and go that way as well. So having, and again, that's why we need to work together is trying to figure out what is the best way to present this information. And sometimes you're not gonna get it right. Sometimes it's like, well, I didn't work. Let's try this. I mean, that was too many. Maybe that wasn't enough. Maybe they don't see color, these kinds of things, right? So I'm willing to try it out. I think that's important to say we might not get it right. The other piece is to not quit before the magic happens. So it's the dance, right? So anyway, movement. So the interest, I just wanna add one thing about complexity. So here's the thing. I've had really good success using prod with kids, but it's not visual success, right? So don't let vision get in the way. So she still can't handle more than nine symbols on a page, right? She can't handle 70, but she needs the language. So it gets into, there's one symbol and you flip it up and there's 10 words under there, right? So the words can continue with the auditory scanning. We don't, vision shouldn't get in the way of that, right? So maybe vision is never gonna get beyond those nine symbols. That doesn't mean we leave them there language-wise. Maybe vision will never get beyond that first single symbol. True. That doesn't mean we leave them language-wise. Absolutely. So movement, this is where we're gonna go with maybe you need to bring the symbols off, make it, bring them to their attention. And the other thing that was kind of a kick for me was maybe we need to think more about using sign because for some of our kids, as Marin talked about, that movement makes a difference. So if they pay attention to movement more than they pay attention to 2D symbols, maybe we need to be doing sign or at least adding sign into a multimodal mix as we're thinking about these kids. If movement grabs their attention, sign is a movable language that may help. Again, none of these are, this is what you should do. These are ideas for you to consider as you're trying to unpack whatever that child is presenting to you. The other one is privileging motor planning. I get kind of dazzled by some of the systems these days that flip and flip. This may or may not be something that a child with CVI can manage, but the idea that maybe I can just learn how to do a motor plan. There are kids that can, well, there are people, adults that can do this without looking at the systems at all because it's not that I have to look to do it, it's that I have to remember where the motor plan is. So another possibility perhaps for some kids is to explore the idea, now this is LAMP, Language Acquisition to Motor Planning, that also has the back that display all of those other kinds of things that we talked about. So it's a possibility. I put up that, what they're I think calling CVI symbols. Now, whether that really helps or hinders a child because it's so complex, I don't know, but you can also mask some of those symbols. So maybe you need to do some masking to help them to start to learn the motor planning. I just want to say LAMP also developed a tactical key guard. So I actually have students who are totally completely blind, lights out blindness, which is super rare using LAMP with a key guard because it is all based on motor plan and it's based on okay, three over two down, that's the word, right? So don't need vision for that, right? So if the child has good tactile skills that's and terrible vision, that's the way we could go. There you go, it's yeah. The other piece though, I think this is a caution is that some of our kids with CVI have to either listen or look and they can't do both. So if we're trying, we have to really be cognizant are they shutting down? Are they not with us as the engagement going down because maybe if I'm listening to you and you're expecting me to look at the same time, I just can't do that, which is kind of an intriguing thing because it also was something that we hear from people on the autism spectrum. Maren, you wanna talk more about that? Well, I get asked all the time about kids on the spectrum and there are some overlaps in terms of some of the characteristics that they see and that is one of them, that the senses are not well integrated and so they are competing with each other and so sometimes you're talking to the kid and they put their head down, they look like they're not paying attention but it's because they're listening or sometimes that the visual information is overwhelming, they can't listen, right? So I think we need to be mindful about that and not pigeonhole them into a box. And again, it's called a spectrum for a reason. So it doesn't, there's a lot of diversity in terms of how that presents. And I think, and so even if we think about outside of the ASD for kids with CBI, the whole extra energy of trying to use my eyes and listen to you at the same time might be just too much, right? So is, am I? Yeah, definitely, yeah, definitely, yeah. Okay, so all right, the ideas that we gave you today are not the thing, they are ideas. And I think part of this is, and Marin and I had a conversation with this yesterday, is the field of AAC is actually relatively young. The field of AAC dealing with the complexity of the kids that we have. And I didn't talk about the fact that, yeah, in the day we were dealing with kids with cerebral palsy who were intellectually intact and now we're having this wide range of kids who are on our caseloads as well. We need to be creative. We need to come together and we need to use these ideas as seeds to say, maybe I need to think about that. It's not the solution. There's no cookbook. There's no cookbook. That's, I think when we gathered together to talk about this, I think the strongest message is there is no cookbook. There is no strategy. There is no bulletproof solution. I always make the joke that there's, people say, oh, we're doing CVI. And it's like, what does that mean? They're like, well, we have high contrast symbols and we're waving the pom-poms. It's like, no. However, not to underscore the fact that sometimes assessment can be very challenging and these are very complex. So we have compassion at the same time for ourselves and for each other as we're trying to figure this out together. And be gentle with the fact that, this is an ongoing dynamic process that takes time and learning. And humility, I left today feeling, geez, I'm humbled all over again. I just wanted to say one more thing between the CVI, CVI debate. The CVI range, as I said, works brilliantly until it doesn't and that's been my experience with it is there are some kids who just don't fit on that range and I just, in my heart apart, know that they still deserve, warrant vision services because they're not using their vision typically and lots of these kids have a AC need. So it's like, well, what do I, do I stay in the game? Yes, I stay in the game and I use what I know. And so I would encourage you if you're a vision person stay in the game, use what you know and keep learning, keep trying to understand and put yourself in that perspective. You know, often these are kids that we would call mild and I'm gonna argue there's nothing mild when your vision system's not learning and everything you're trying to learn is visual, right? If there's something not right, something's not right and we need to stay on it, well, as we try and piece together that information. And what I would say is it's on us as AAC professionals to invite you in and to really make sure, so this is where we're gonna end. It is essential that vision and communication therapies be integrated. Oh, hang on, I have to move this thing and that vision specialist, speech language pathologists and other professionals work collaboratively with family members to increase the child's ability to use his functional vision so that he or she can access language, communication and participation. So that's from Blackstone and Roman. And then I'm going to say, and it is also essential that vision specialist, speech pathologists and other professionals work together collaboratively with family members to help children develop language so that they can understand, put words to meaning and express, talk about what they are seeing. So with that, I think our ultimate message to y'all tonight and thank you for staying with us a little bit late is that we are better together. We need to be doing more work together and we need to continue these dialogues so that these kids who are deserving of developing their vision while and in concert with developing their ability to communicate and develop language is paramount to them being participants in the world. And I'm going to just say this again, being safe. So thank you all for being here. I hope this was helpful. Naren, you want to say anything as we close? No, I just wanted to say thanks for the opportunity to collaboratively teach and talk because every time that we do, I always learn. I need to hear this thing lots and lots and lots. This is a beginner mind over and over again. So thank you for the opportunity. Yeah, very good. Thank you. And I will open it up if people do have questions or comments I see from Kiri who said, not to put too high contrast symbols together with the same color together. Absolutely. That's kind of using color. We don't want to, if you're using color, two colors at the same place is not using them. Honestly, a lot of what we said tonight is kind of... Surface level. Surface level. And to get to the depth and hopefully we will think about a way to get to the depths will take, would take more than an hour. We just want to give you some things to think about and thanks for all of you for timing in on that. Any other comments or questions before we close? Jalef, see, Leslie had a comment also about wearing solid colors. With the sign. Siding. That's a great comment because that contrast between the hands and the background. Beautiful. Good call. Exactly. And I think that goes with all of it, but for sure, thank you, Leslie. That's great. Very, very important. Thank you for all you guys do. I know everyone on this webinar is out there trying to do the same things that Marin and I are talking about. It is a journey and hopefully in five years we will have more information. But I think for now, and we're all going to go out there and try and explore the best ways to give these kids access to vision, language and communication.