 Now, you guys are not sissy. You know how to do the snow really well. So I am here to talk a little bit about one of the things. Let me just step back for a moment. It's my understanding that we are not, in these three webinars, we're not going to review old stuff. We're not going to talk about the definition of the characteristics or what's up there, any of that. You guys have that. And so I am delighted to say we're going to just move forward with some information that was agreed upon. And hope that it will spring some questions or some thoughts. Now, I have a question, Roy, about if people have questions, is there a way to do that? Because my screen doesn't show anything except my slide. Yeah, so folks have the ability to put a hand up and then be recognized. And we also have a chat function where people can put comments into the chat. We will manage them and just let you know what the questions are. I just had a comment through somebody who asked if it was possible for you to turn your microphone up. Yes. Is that better? That sounded a little bit better to me, yeah. OK. OK. And if that's still a problem, please let me know. And perhaps I can do something to help improve that. All right. So I'm going to start with a CVI update, things to consider. And so one of the first things I want to start with is just welcome. And I think to myself, what can I share with you today that broadens your understanding of CVI? You folks have the basics for sure, your experience, you know a lot about CVI. You know that you're all practitioners as well. So many of you have a deep understanding and years of experience. Some of the challenges among the experience. This is what people have told me. See if this rings a bell with you. That they sometimes have trouble interpreting the range scoring, like they are in the plus full program. They may have trouble conducting specific parts of the range and they have questions about just specific parts. Applying the results of the CVI range to individual students. So now that I have a score, I'm not sure what that looks like in that child's day-to-day life. Selecting appropriate materials and environments for two students of CVI. Some of the challenges are also managing the needs of individuals who are in phase three. This is a common, common difficulty that has been reported almost universally. That people seem to learn about CVI from my perspective in a certain order. They learn phase one, phase two, and then the hardest and sort of laugh to really get that high level of skill is in phase three. A challenge may be facilitating improvements in functional vision. Integrating accommodations into routines across therapies and instruction. It may be a challenge to think about CVI and communication needs and meeting parent expectations. That's always a very big issue. In this hour, I'm going to talk to you a little bit about some of those challenges, but I'm also going to talk about some research that's going on and I want to talk about the CVI range endorsement. So I'm going to pass on the video because I'm worried that it's not going to play right. So you just saw a screen that was going to have a video, but I want to maybe try another one in a moment. One of the difficulties is that we're not all in the same place. So everybody has a role. Everybody has a place. It isn't like this picture where somebody's going to not get a seat at the table. The novice in CVI has a role and the expert has a role. And we all really need to work together in this process because no two people really aren't exactly the same place in understanding CVI. So your professions, meaning those of you who might not be vision people, your professions are diverse, students are diverse, and the goals are shared, but the goals are shared. So I was going to show some images of a child with CVI so just so that we all remember and maybe for those who are not novices or those who are really well advanced, I always want to remind people that when you look at a child with CVI, you have no idea. You have no idea when you encounter a child who may have CVI based on what they look like. This is a child who looks like a typically developing five-year-old who has CVI. And here he's trying to really discriminate the very fine internal details of these images to find the ones that are the same or different. This should be a child in phase three. OK, so look at this with all of these faces. Is that so? Is that funny? Can you show me a face that looks like that over here maybe not the same color, but a face that looks like that at the same face as that? OK, I'm going to move on. These are also students with CVI, of course. I'm just trying to emphasize the diversity of this group of children. So this is a child working on a lightbox. So I just want to stop for a moment and say, are the videos working for people? Roy, has anybody put their hand up to say the videos are not working for them? The videos are working just fine for us. So I'm assuming that they should be OK out there, yeah. Somebody just responded, videos are good. There's another child. She doesn't like Elmo at all. It's like a real issue with her. What I want to say about those little video clips is that each one of those children has a different score on the CVI range. Each one of those, so you saw a child in phase one, a child in phase two, a couple kids in phase two, and a child in phase three. And that's what part of what makes all of this so challenging is that these children are so, so, so diverse. And we have to know, I don't know what that means. Oh dear, something is different. We have to know how to really address the needs of all of those kids all along the continuum. If most of you are a tenorant teachers, this is the old news for you, right? You do this all the time anyway. So those characteristics, the characteristics are the things that really bind the children with CVI together. They might look different, some walk, some talk, some are, I know, children with CVI who are gifted readers, and yet what is it that binds them together? It is the fact that the characteristics, those ten characteristics remain active with that child. There are two other criteria you guys know what those are as well. So the level of the characteristics, of course, determines the course of our support. And unfortunately, and I'm just sort of gonna do this as an intro to our three lectures because the CVI range is really the centerpiece, I think, of all of our work with children with CVI. At least it is in my opinion. Unfortunately, the scoring of the range is not always performed uniformly. Unfortunately, accommodations and CVI direct instruction are not always applied accurately. That's really a problem. The child's level of functional vision doesn't change if we don't get that right. So I'm gonna breach behind me right now and I'm gonna pull out a folder that has a document in it that I brought with me home from a clinic yesterday, CVI Clinic, PDF review. I wanna read to you something that was in, that demonstrates this point. That the individual who this is, the child that I was seeing, who is a, let's see, she's an eight-year-old child. And it says that the vision support teacher observed this child over two sessions. The purpose of the observations were to conduct the across CVI characteristics method. This score provides an overview or composite perspective of the overall extent of the impact that CVI is interfering with this use of vision. Her score place sure is range three to four, meaning that she functions more with a more consistent visual response. Now, if you know what was wrong with that, those statements I read, then good for you. Because when I read this and I had a parent sitting right in front of me, my thought was, wow, what am I supposed to do with that? Because we know that the CVI range is rating one and rating two. It incorporates observation interview and direct assessment. It is, you have to have two scores, one from rating one and one for rating two. How this person got two scores, three to four, from doing one method, but not even really doing it, in my opinion, places this child at risk, okay? So that concern, that whole concern, has led to the Roman Perkins or Perkins Roman, I see it both ways, CVI range endorsement. If Roy, if you could tell me if you're still there, how many people, people that are present have heard of the endorsement, the CVI range endorsement. People could just take a moment and let me know. Just go ahead, folks, and use your up hand. And I'll just quickly go through and cop those. I am seeing so six. Okay, out of, you said there's about 30 people present. We have 40. 40. Yeah. Let me take a moment and explain to people what this is. I think it's a really important piece of information, that the Roman Perkins CVI range endorsement is, I'm gonna go back for a minute. So when I see things, oh, I see somebody. Somebody has your camera on. Krista, I see you. Look at, do you, does everybody see her? Uh, who's got their camera on? Please turn that off. It's okay. It's off now, I think. And so when I would encounter documents like that, when I saw IEPs, and I saw record reviews, and I saw assessment materials, I wonder how you do that. And I see that somebody has actually made a really good attempt to address the child CVI needs, but they have completely missed the boat on doing the CVI range. Parents would ask me, they would always, they would say to me, well, how do I know if my vision person knows CVI? How do I know if they know how to do the range? So for that parent, you know, she doesn't know, she actually was so pleased that her teacher did the CVI range, though she did not do the CVI range. She did something, but it wasn't the range. And so it occurred to me that I had a responsibility since this is my test, I have a responsibility to make sure that we identify people that can do it well. And so the endorsement was really born from this need to acknowledge the students of people who really know how to do the range. It is a way to really thank people for the additional work like you guys are doing right now. You are here, but you probably don't have to be. I'm hearing lots of voices. And it's a way to acknowledge the additional work completed by individuals who have been motivated to improve their skills and knowledge relative to CVI. Some of you folks are these people for sure. And so, you know, thank you. Thank you so much for the work you've done, the passion you've had, and the way you've followed up on the needs of kids with CVI. The endorsement is a way to establish a level of competence that can be recognized by parents, administrators, and educational teams. And so if somebody is CVI range endorsed, it doesn't mean like they're necessarily the best teacher in the world. It means that these are people that are maybe, maybe they are the best teacher in the world. Maybe they're somewhere in between, but they are people who know how to administer the range and understand the principles that are contained in it. It's a way to provide competent support to individuals with CVI. So when a parent has somebody who's CVI range endorsed on their team, they don't have to ask the question, do you know how to do this test? Do you know what this test means? Do you know where to take the information from this test next? They've already proven that. So just like many of you have certificates in braille competencies, without the certificate, you're probably just as competent. But the certificate is a way to send a message to people that I don't really need to explain myself. It's, you see that I've completed this. People, let's look at PT. There's neurodevelopmental therapy, NDT, right? So people can't just say they're NDT trained. They have to actually pass a threshold of test. They have to demonstrate competence in that. So this is a way to do that. I also want to say, and most of you know, I am a teacher of the vision impaired. I am an ONM specialist. And so maybe a lot of you know that I also taught in higher ed for 17 years. And I know that the competencies that you're expected to learn are designed by the Council for Exceptional Children in the United States. I don't know what it is in Canada. And university people like me, I had to teach what I was told to teach. You must teach X number of hours of braille instruction. You must teach X number of hours of anatomy and physiology of the eye and so forth. But in that list of expectations for university people, there is little to nothing about TBI. And what's the problem there? The problem is TBI is the leading cause of visual impairment in children. And so everyone who knows me knows that my mentor and my great, the person that I admire so deeply is Dr. James Jan from Vancouver. And he once told me that for every one child with TBI, for every one child with ocular visual impairment on a case load, there should be about 2.5 with TBI. That's how many kids there are with TBI. And that was a while ago. So, again, range score is important. Well, I'm gonna go back to this. I wanna say a little bit more about the endorsement. So, let me just say a little bit more about the endorsement. So, this is what's contained in that. So, Perkin School for the Blind put their hand up and said, we would like to partner with you. I wrote a proposal. I asked for letters of support. And in seven days, I had this flood of letters from universities, from schools to the blind, from itinerant teachers, from parents, from administrators in special education settings, from, you name it. And I collected those up and took them to a few places and said, would you be willing to sponsor this endorsement? And it was Dave Power at Perkin School for the Blind who said, I think this is important. Yes, we'll do the work. This is what's involved. The whole thing can be done online. A person who wants to be endorsed just goes online to Perkins.org, Perkin's e-learning. And in Perkin's e-learning, there is a link to the endorsement. And you write in some information about your experience with students with CVI. And then they decide whether you are eligible to go forward. So, if you once met a child with CVI on the street, that's not enough. If you once were in a special ed classroom and you saw a child with CVI, that's not enough. You have to have worked with kids with CVI. You had to have assessed kids. And so, once that's clear, you take a test of knowledge and it's a multiple choice test and it's not meant to be overly difficult. It's a basic test. Then you do score two videos. And the videos are me conducting a CVI range in a controlled and well videoed setting. I do the interview. There are observations of the child and then you watch the direct assessment as well. Then you score it. And you have to get within 1.5 points of my score. If you do that with both videos, then you're good. If not, they give you another chance or two. I also have office hours to answer questions. And finally, you have to have letters of reference. The letters of reference have one, at least one has to be from a parent. So, when that collection of things are sent, all this is done online, then you can become endorsed and your name goes into a directory. So that parents and administrators and everyone who's looking for an endorsed person knows where to find them. There are people in Canada who are endorsed and I think it's a really, really important movement. And I think that at least I can speak for parents maybe on the East Coast of the United States where there's a lot of emphasis on CVI, more so than other parts of the United States perhaps. There are parents who are not finding an AP without an endorsed person being somewhere on the team. They don't have to be their child's direct CVI but they have to be available for consultation. And I think that's an interesting turn of events. I'd love to know at this point what your questions or comments are about the endorsement and truly just have at it because believe me, I've been in rooms where people have asked some very direct questions and I want you to. So what are your questions or thoughts about it at this point? Is there anything Roy? I'm just seeing, it's a marvelous thing, what a good idea. So far that's what I got. Another good idea. Christine, you have to be a teacher of the visually impaired. Could you be like an OT or PT to get the endorsement? You can be from any professional background, educational professional background or therapeutic. So OT, PT, speech, yes. And there are people from those fields who are endorsed. They never can substitute for the teacher of the visually impaired. So every child who needs a TBI gets one. But that endorsed person can be part of the team to help with some technical stuff around doing the range and so forth. Yes, they can be from any field. There's a very practical question, Christine, that says, is there a cost for the endorsement? There is a cost. It costs $125 for five years. A cost, it lasts, so it's $25 a year. And I know in some places, administrators are paying for it for their teachers as an option for in-service, instead of in-service, they sometimes pay for this or sometimes just pay for it outright. So, and sometimes teachers are paying it on their own. But the cost is literally just to manage the websites and to pay the people that do it. I should tell you, I think it's very important that you know, I don't make a penny from this, nor do I review any of the applications. My job is to do office hours in case you have questions, but we want to make sure there's no even hint of any conflict of interest. So I'm completely out of it. I just do the office hours part. Perfect, thanks, Christine. Okay, I want to, I'm gonna skip out of this in just a sec. And I want to go, I really want to, I'd like to share with you some, share my screen on this one now. And I want to share with you some data that have been collected around, forgive me for this scanning through. So here are some, I wanted to, part of the purpose of today's meeting is to talk about some research activity. So here's, I wanted to talk about this. So I just want to remind people if you don't know that the interview instrument in the range. So you know the, the CBA range is part interview, part observation, part direct assessment. The 25 questions used in the interview portion were actually my doctoral dissertation in 1996. And what we found was that these 25 questions, such as, does your child have a favorite color? When you offer something to your child, do they seem to respond better in a certain way? Meaning to the right or the left or up or down? If you take your child, if you offer your child a new object and one they know well, what would they prefer looking at? Those are all scored based on how the parent responds. We either say, yes, that's the CBI like answer or no, not really. This weekend clinic, I had a child come in who did not have CBI and the questions in the interview were so confusing to the parent. Like, does your child have a color? Is there a color that can just, you know, really draw your child's attention? And the parent looked at me like I grew a second head. That's how they do look at you when you ask these questions of parents with who don't have CBI. This was asked of parents who had, or the child either had an eye disorder or CBI. And what we found was that the children, the parents of the children with eye disorders answered the questions extraordinarily differently than those in CBI. We also found that I also then had to take the same question. So we knew it was sensitive to CBI, but not ocular. And asked parents of infants who had had some kind of brain injury, did the parents of kids who, you know, will leave in the NICU or had a history of a brain disorder or condition? They were interviewed with these same questions. And at the same time that the interview was happening, a teacher of the visually impaired who was trained, had was with that baby in another room and actually conducted the CBI range with that child. And then we paired what the parent said with what the child did. And we found that the significance, meaning to what degree could this have been chanced at the match of what the parent said is what the child did, it was significant with the p-value of .0001, meaning it's almost impossible to be chanced. That's a really good thing. So that means these questions really do get at the heart of CBI. In 2010, there was an article published by Dr. Sandra Newcomb in which she looked at the entire test and she wanted to see if it was reliable and valid, whether it had internal consistency. She looked at test retest. She really just tore the test apart basically to see what the psychometric properties are of the CBI range. Believe me, I lost a lot of sleep during this period of time. I thought, well, I could knit the rest of my life, that would be all right. Because I really thought if they find it to be a very weak test, you know, that's not good for kids. So what we found was that, I'll just go back, was that there was a very high degree, very, very high degree, 0.90, 0.95 of inter-rater reliability. So if two people conducted the range at the same time, they got very similar scores. If you tested a child on day one, you went back within two weeks or so and retested the child, they got the same score. And the questions that you ask in rating one agree with the responses that you get in rating two. So the internal consistency was strong as well. Those are all good things, too. I want to tell you some of you know Jane Aaron. She is a retired professor from University of Arizona, very esteemed professor in vision. And she, she, I was at a meeting where she was talking about assessment. She was doing the presentation. And to my surprise, she said that there was only one test in all of visual impairment, that that was a reliable and valid instrument and it's the CBI range. So it is the functional vision assessment for children CBI. And I hope that you can feel confident that it actually does what it's supposed to do. I was surprised actually at the outcome. I'm very pleased. So I want to share with you, maybe some of you years ago even saw the data that I collected from our clinic called Pediatric View at the Western Pennsylvania Hospital. It is a clinic where I evaluate children who have CBI or suspected to have CBI. In our clinic, we also have the benefit of having a neonatologist present to review medical records, to look at MRIs, to answer medical questions about, you know, conditions or seizures or, you know, that kind of thing. And we, we, you know, published that, that was published in 2010. Well, I've continued to collect data and a second set now has emerged and this will work on publishing this. And I wanted to share this with you as well. And these are the data that were collected on the children that we see at Pediatric View. Now no names are used, all of the information is coded. And what I'm really curious about is what, what is the profile of a child with CBI? What do we know about kids with CBI? So it's important to know that these are, these data are collected from a group that cannot be considered a random sample because parents who come to Pediatric View and Pittsburgh, they are self-selected volunteers. They are not, nobody makes them do this. And we know from research practices that volunteers are essentially different than randomly selected people. However, given the fact that these people were highly motivated and that they were seeking information, we think that it's interesting to see what the outcomes can be when someone is so, so ready to take this on. Okay, so there were 431, they're called patients because we're at a hospital. That's always a conflict for me as an educator, but that's the way it is. And I think, I think we might have one of the largest data banks of children with CBI that includes both medical and educational data. These children span three months of age to 21 years of age. The families came from 31 states in the United States and 11 countries outside the US. This just shows you the top 10 states in the US by volume. And those states that are closest to Pennsylvania and Pennsylvania itself are obviously the greatest number. But if we look at a different map, you can see that they also come from places all over the world. And if I updated this map, there would be more stars on it. I wanna tell you that I don't see this as a good thing. I see this as an unfortunate thing. My wish is that there are enough CBI range-endorsed people that parents no longer travel these great distances for a two-hour assessment. And that's what they get for me, a two-hour assessment. That's just not right. I think that's just not right. And so, this is meant to show, to me, this reflects the great desperation and the great hope that parents have that something more can be done to help their child's functional vision. Any comments so far? Just at any point where if there's a hand up, let me know. So what are the ages of these patients at the time of the diagnosis? So we keep data on when did the child become, that when were they diagnosed with CBI by a neurologist or an ophthalmologist? Those children who were birthed to 12 months, they were 130. Greater than 12 months, between 12 months and two years, there were 50. Between two years and three years, 19. Greater than three years, there were 56. And how about this last one? 176 of those individuals came to pediatric field. Seeking a diagnosis. And those were 176 who had CBI. So that's troublesome to me. And I think it suggests that there are children, many children, almost half, right? Who are not, who have CBI and are not, there's CBI's not being addressed. We have a lot of work to do. So again, look at your own case loads and think about how many kids in CBI you serve and wonder to yourself and if you can, how many others are out there. It kind of gives one pause. 380 of these individuals having neurologist. I bet that's not a surprise. 421 have been examined by eye care specialists. And additional specialists include orthopedic people, surgical people, psychiatric people. 392 of the 431 have a diagnosis. I wanna go back to something here. 429 of the 431 have a diagnosis of cerebral palsy of some type. So doesn't mean all kids with CBI have cerebral palsy, but it means quite a few do. I've often wondered if we could screen all kids with CP for CBI, what would we find? These are the therapies that this group of children get. And remember, they come from all over the place. So that is pretty generalizable. That's pretty random example in that they come from lots of different areas. 322 have a PT in early intervention, school age or both. So most of the kids are getting the greatest service that they get, the greatest number of children get PT. 311 get OT, almost as many get OT in early intervention, school age or both. 195 have a speech therapist in early intervention, school age or both. 210 have a teacher of the vision impaired. And that's less than half. 56 have orientation and mobility in early intervention, school age or both. And 12 had a teacher of the hearing impaired. There were 19 with a diagnosis of hearing impairment. I would love to know what your thoughts are about this number in blue. The 210 who have a teacher of the vision impaired. So these kids come to pediatric view, the parents bring them to pediatric view. And when I ask them the question, tell me the services your child's receiving. And they say they're getting PT, OT and speech. And then I ask the question, are they being seen by a teacher of the vision impaired? I hear often, about half the time, well, no, because they don't qualify or no, because they don't have anybody in our area or no, because they said they don't work with kids at MCBI or they don't understand TBI. How about when somebody says, I don't understand TBI, how would a parent feel? But anyway, what are your thoughts about that? Do you feel like that it's better in Calgary than these numbers reflect? Well, from my point of view, I'm not really certain. Of course, we've got, we're dealing with fewer kids. I think more and more our TBI's are, their caseloads are becoming a little bit more full with students who have TBI. I welcome some comments from other teachers of the vision impaired who are on board here. We've got about 16 or 17. They're all being shy, Christine. Okay, let's acknowledge together that we still, you know, we still have some work to do. Okay, I just got one comment here from one of our TBI's that says two thirds of their caseload have TBI. Okay, then I'm not talking to you. You're already there, you are there. I'm not, this is not for you. You are really there, my gosh, two thirds. Thank you for what you do, thank you. Okay, so then when we look at the, what are the vision conditions that these children have in addition to TBI? Many of the children have scubism. Many, many, many of the children have an eye that turns in or turns out. A great number of them have some optic nerve disorder like a paleoptic disc or a small amount of optic atrophy or hyperplasia, but it's not enough to explain their functional use of vision. So I would even say, you know, when you see optic nerve atrophy in a child who's, you know, complex especially, just maybe think about doing a TBI range because there are a lot of, that's a co-existing thing very often. 32 of nystagmus, 102 had a refractive error with most of them being far sighted and that's very unusual as well because most, you know, most glasses are prescribed for the pediatric population as near sighted. So that's another discussion for another time, but that's an interesting one. Additional diagnosis include seven that had ROP that only reached stage two or possibly threshold but no, meaning stage three, but no surgery, coloboma, glaucoma, ptosis, cataract retinal scarring, those were some of the additional ones. So this shows again the number, if you just look at this pie chart and we look at the number of kids and children who have scubismus, you see how common that will be. Almost, you just look for it. So it's so interesting to me too and maybe the vision people are aware of this as much as I am that, you know, people will, what they see is the easiest and most tangible things for them to want to reach out to. And unfortunately, you can't see CVI, just can't really look inside their brain and see it, but when you see that stir business, that's something that, you know, eye doctors and sometimes even vision people will really latch onto and say, well, that's sort of their primary issue. It's just, no, it's one of those coexisting things, but in all of these cases, these were children who had very mild or unilateral or it could not, their condition that you see listed there could not explain their CVI in all those cases. Now, obviously, there are children with glaucoma who are blind, you know, or have very low vision, but that's not these children, okay? One of my most surprising slides, this is one of the most surprising, was that 303 of these children were born full term. 128 of them were premies. This is not, CVI is not a condition of prematurity. When people say, well, there's so many kids in CVI because we have so many premature children. Uh-uh, not really. There are some children who have, end up with PBL or who have grade three or four IVH that, you know, have that certainly were premies, but by far more of the children are full term. So a full term baby who's had a stroke or a full term baby who's had, you know, who's had maybe anoxia or asphyxia, that HIE, those kids have been in the cooling protocol. Those children are very much at risk, very much at risk. So keep your eye on those children. Some of them have had trauma, some of them have had near-missed. Those children are, represent this larger number. The major, what we found in this data set were that the major conditions and causes of CVI are first HIE or asphyxia, stroke, PBL, or any type of white matter damage, trauma, infection, structural brain disorders like hypocephalus, chromosomal disorders, we're gonna see more and more of those as the tests get more sensitive. Metabolic disorders, intraventricular hemorrhage, there are four who have, there are a lot more kids that have infantile spasms, but there were four who the only thing we could find in their medical history was infantile spasms. So they were included as that being the primary cause, but generally that's not the primary cause. Three had tumor and one was a child who was withdrawing from fetus exposure and noxious substances that child was withdrawing from drugs. This is a controversial one because most, drug exposure in UDRO is not associated with CVI anywhere really, but I think there are people that would take issue with that when I once said that they should list something like this that people in Alaska, they told me, you're crazy, it's definitely a cause of CVI. So stay tuned on that one. Okay, so this just shows the bar graph of how of these causes. And you can see that asphyxia is, it always has been and it still is the primary cause. Structural brain disorders and chromosomal disorders almost could be sisters because chromosomal disorders often cause brain, the structural brain differences. So be aware that those things they're kind of partners some of the time. Christine's got another, an interesting question that has just come up. Is there any evidence for connection to fetal alcohol spectrum disorder? Not that we know, but again, remember those Alaska people, they told me, yes, there is, it's me. What do you guys think? Yeah, I'm not sure. Karen, you asked the question, I'll put you on the spot, have you any thoughts? She says that she just had the question posed in the past, so we'll carry on. Thank you, 113 of them had seizures in the newborn period, in other words, by the end of the first month of life and 162 have ongoing seizures which all sound familiar to everybody. The children who were taking medications 271, the most common were those medications that were to control seizures. The age of diagnosis of CBI, the average age was, I'm sorry, the average age of diagnosis in children with congenital CBI was three years, two months. The range was one month to 19 years and the medium age was four. That's another problem that needs to be fixed because if the greatest period of plasticity, visual plasticity is an interesting, then we really should do everything we can to take advantage of that for sure. So you see the challenges we've had here. I'm almost done with this and I have one more thing I wanna show you, so I'm gonna rush through this. The CBI range scores at the time of the first pediatric view appointment, regardless of age, this is probably the most important two slides. 299 of the 431 children scored in phase one or 69%, and that's regardless of age. So whether they were 15 or 15 months old. At the time of the first pediatric view appointment, 121 scored in phase two, which is above three to seven, which means they have more functional vision. And at the time of the first pediatric view appointment, 11 scored in phase three, almost no one at that first appointment. So when I first meet the child there of any age, I can pretty much say it's money in the bank that they're gonna be in phase one because 70% of the time pretty much they're in phase one. Some of the time they actually are in phase two because somebody really helped them get to that point and only rarely do I meet a child on that first appointment who's in phase three. At the time of the last pediatric view appointment, regardless of age, the opposite happened. 21 were in phase one, 120 were in phase two or 27.8% and 290 or 67.2% were in phase three. And so what we, something happens, something happens when that family comes and they, we assess the child and we talk about what the child needs and I write a report and I hope that it's helpful, that parent is on, they change what they do with the child. The team probably changes what they do with the child. I don't know, but the information they gather creates a need for them to do something differently and the child's functional vision improves pretty dramatically. We also know it takes about 2.7 years. I should go back to this one, it takes about 2.7 years. I'm so sorry, 3.7 years on average for a child to get from phase one to phase three. But that's only after that first solid CBI range assessment and the modifications and adaptations and specialized instruction that flows from that. So we can, I always tell parents, well, it is out there. Is today your first CBI range or did someone already do one with your child and the clock starts from when that first official CBI range was conducted with the assumption it was done correctly. Okay, so we're still to worry about these 176 children who are undiagnosed to the person's appointment because it's naive to think that we found all these children or that they are not lost in classes for kids with autism or significant multiple disabilities. So we want to, I want to skip all this now because I want to, I want to get to the last part. I want to show you that the research part, let me see if that is, close your eyes for a minute so you don't get vision. Christine, while you're doing that, got a couple of questions that have come in. One of them is, can you expect that every child who gets appropriate intervention will learn to use their vision? That is, they'll move through the levels. It has a really significant brain injury. They're non-verbal, they have seizures. What I just showed you, that's the profile. That's who these children are. And so they may not be those kids who go on to read or read print, but they are children who can be in phase three and use complex communication devices because they've got so much more functional vision. The child who doesn't, there are two reasons I have found that a child doesn't improve their functional vision as measured by the range. One is the child has a debilitating condition that is degenerative. And so they're literally, their brain can't, they just, they're losing ground all the time. The second is, if a child doesn't have enough opportunities to use their vision, because opportunity is the key to this. And so maybe in one of the future ones, I can't remember what we're doing. We can talk about ways to make this come alive every day for a child, even if you're not there to do, create a CVI schedule that gives this child opportunity to use their vision at that assessed level all day long. And it runs without you having to necessarily be there, but it's a plan that takes a little bit of time and effort to get organized. It's a way to put what you've learned from the CVI range into action based on what the child's schedule already is. So there's no more vision time of, it's really about accommodations. So the last thing I wanna show you, and we just have seven more minutes, is how early did these characteristics emerge? And so I identify, I've been working on an infant screening, and I'm gonna go through it quite fairly quickly. I want to identify babies because of that 176 number. I wanna try to identify babies who are most at risk with CVI. So we know that there is this very serious screening for kids with ROP. Why is there not a screening for kids with CVI when it's the most common cause? And so this is what I'm working on, that the screening is used to identify babies with high-risk behaviors, CVI behaviors, which is based on things that I learned from the nurses in the NICU who would, when they would say, you need to come see this baby, Christine Roman, and I would say, well, tell me why? And they would describe to me things, they saw the baby doing, and I thought, oh, we can probably do something with that. So we ask two questions and observe three behaviors. First, we ask, does the child look at your face? Because parents, you have to ask a parent, and if the parent says anything short of yes, and newborns look right at their parents' faces, so if the child doesn't look at the face, or the parent says, well, I think it's getting better, that's a positive for CVI. If the parent says, well, not yet, that's a positive for CVI. We ask, do you have concerns about the way your baby sees? Because I've learned that retrospectively, parents will tell me, boy, those first couple years, I didn't know if she could see at all. So I want to get at that. And I want to ask, not in what the parent says to me, well, the doctor said, and then I'll say again, but I want to know what you think. And if they say, I think my baby seems fine, that's a negative for CVF. They say, well, I think it's improving, or I'm not sure that's a positive. Well, then there's three things we observe, whether the child gazes directly into bright light, whether they blink when they're touching the bridge of the nose, and whether they look at a face, a human face with eye-to-eye contact. And you can see the characteristics of CVI that accompany those behaviors. So it's a very short thing to do. We're doing it at our hospital. We just finished our data collection, and Dartmouth Hospital is also doing it in New Hampshire. All right, so I wanted to show you two quick videos. The first video shows a baby who's 31 weeks gestation, but in the video it's 36 weeks, has no eye disease, no ROP, has a normal MRI and normal brain, and no neurologic problems. Their neurologic exam was normal. They blink when they're touching the nose, they look at their mom's face, and they close their eyes to bright light. This will give you a sense. There's some things in here that are not part of screening, ignore those. This is your baby, you'll see how he blinks. Okay, that's a good thing, right? All right, let's go to the next one. So he closes his eyes. Now, the light that we're using for the research is a standardized light in its red. It's not this light anymore, but you see how he does that. Oh, I hate that. And babies are photophobic, they should do that. And here's his baby looking at his mom. And even though he gets stressed and starts to hiccup, he's got eye-to-eye contact with his mom. Isn't that a beautiful thing? So he's stressed, because that's why he's hiccuping, but okay, now I want to compare this. Now I'm gonna skip to the last one. This is the baby who has a positive screening and who will be followed. Who will be followed for possible CDI. We saw this 42 weeks at the time of the video. He has enlarged ventricles and white matter damage. He does not blink when touching the virgin nose. He does not defend himself to bright light. He does not look at faces. He also has some other visual behaviors that are concerning. And here he is. He's also in a dark room. You can't do this in a dark room. There's very standardized conditions now, but just get a sense of what this is. Isn't that striking? All right, one more minute. And no blink, and no blink. And so that baby, that last baby, that last video shows he doesn't look at faces either. He demonstrated all of the, so at nine months of age, this is what I just say, at nine months of age, between nine and 12 months of age, the children who score positive, like they look like they might have CDI down the road, we reassess those children between nine and 12 months using the CDI range. If the child has a CDI profile on the CDI range, it shows they have the characteristics. And they've had a positive screening. We have enough evidence to say the screening seems to be picking up kids with CDI. We have had, in our, we've had 53, since 2015, 53 infant screens. One minute. Somebody, somebody needs to mute. 53 additional infants were screened and 28 had positive for CDI profiles and seven ultimately were diagnosed with CDI. Those were seven children who were diagnosed with CDI by between nine and 12 months of age. And they were then able to get interventions very, very quickly. So there's a whole protocol and we're working it through. We're hoping that we can get enough data to write a much bigger grant and do this on a bigger level. And if any of you are interested in, you know, you know, hospitals that want to participate, let me know. So I'm gonna stop right there. All right, so anybody, do you have any last minute questions? It's 629 and, you know, you can tell I used to teach graduate students because I never go over because that's like the kiss of death if you talk, if you lecture longer than the class is. So I'm very prompted about that. But are there any, is there any question anybody has at this point? There's, Christine, there's one question in the chat that I think went to everybody. So you can read it, it's fairly lengthy. What sort of significance does it show if the child blinks to a puff of air but not with a tap on the bridge of the nose nor hand pass? What was the first part if they blinked to a what? A puff of air. A puff of air. A puff of air. I don't think it might mean that they're closing your eyes because it feels intrusive to them. They don't blink to the touch or the threat. Then I would, it wouldn't, I mean, on the range, it just wouldn't mean anything. It would suggest to me that the child probably is gonna be able to blink to the touch fairly soon. But I don't assess that piece, you know? It's not the same when somebody, you know, when air is blowing on your face versus when something visually is approaching you. So it's interesting, but it's not, I know I can't correlate it with those other two responses. But thank you. Great, great, thank you, Christine. Well, we are past the time and we respect your time as well. I guess it's getting close to dinner time for you. So thank you very much for that very informative hour. We're all excited about next month's webinar. So we'll see you in about a month and do have a fantastic Christmas holiday break. And same to everyone else. And to the folks who are on the next meeting, you guys can just stay on while everybody else checks out. Okay, thank you. Okay, take care. Bye-bye.