TRANSCRIPT - TSBVI Coffee Hour: CVI Companion Guide Ð 9/12/22 >>Liz: Thank you so much for having us here. This is Liz Hartman. I'm a professor education at Lasell University outside of Boston Mass. I'm here with my two co-presenters, Andrea and Kitty. And we're just really excited to be here. We titled this Coffee Hour, collaboration and curiosity. We're really excited to tell you the story of how we came together as colleagues and collaborated around supporting infants and toddlers with CVI and how our curiosity for the topic continues and grows with this collaboration. Next slide. And actually next slide. Thank you. So we are actually -- the three of us are presenting a larger team. I'm going to talk today about the CVI Companion Guide, which is a resource that was co-edited and published by me, Dr. Lueck and Dr. Chen. While we were in the middle of publishing it, we collaborated with Andrea and Kitty, and you'll hear about that today, at the New Mexico School for the Blind. We began to test out if the resource we created would help CVIs in the field. You'll hear our research and scholarship but mostly the practice, what happened when this resource hit the field. And then we also wanted to recognize another colleague who has been really important to our work, and that's Dr. Corrina Bauer, who is at Harvard. All right. So let's begin with a quick overview of what the CVI Companion Guide is. So the CVI Companion Guide is a resource and it's based off of the developmental guidelines for infants with visual impairments. Now, this is a guidebook that was co-published by me and my co-authors, probably about ten years ago. And when it was time for us to look at it again and freshen it up, we made a decision to create what's called now the CVI Companion Guide. So to take this resource and update it but when we wanted to update it, make it specific to CVI. So the purpose of the CVI Companion Guide is to create a very practical guide for TVIs in the field that will help them to really understand CVI and give them the just in time tools needed to document and monitor how children develop and how their CVI manifests over time. And we did this using a similar framework that we had for our original publication and that was really looking at the important developmental domains that were established in the developmental guidelines. We looked at social-emotional domain, the cognitive domain, and fine and gross motor. And we really motivated to make sure that we provided lots of guidance on what types of interventions and strategies and tips TVIs in the field could use with young children, infants, toddlers with CVI right away. So it's also important to note that the CVI Companion Guide is not an assessment tool. And I think because there are so many very popular assessment tools out there on CVI, there can be sometimes an inclination to say, hey, is this another one? No. And we don't provide age expectations or developmental levels. This was something that was in the previous publication but we decided not to do this because we feel that CVI and how it manifests in these young learners is so varied that it actually wouldn't be appropriate. So what we do in this resource is provide guidance for the types of interventions that you can consider, especially around the developmental domains that I mentioned before and we give you lots of intervention suggestions and ways for you to monitor the child's progress over time. The CVI Companion Guide, when we were putting it together, we wanted to make sure it brought together lots of relevant research from the fields and, in addition, the professional and family wisdom, so the experiences from all of you out in the field working day after day with families of students or young children who have CVI and those who have CVI themselves. So we really tried to weave that with the research and we drew our research from the field of visual impairment, developmental psychology, Early Childhood Special Education, and Deaf, hard of hearing, or hearing loss. The key concepts of the CVI Companion Guide are based around these three points. First, developmental differences. So we acknowledge that the development of students with CVI can be both similar and different for then those children who have more ocular visual impairments. So we try to tease that apart and also knowing too that they can overlap, because they often overlap with some infants and toddlers. Another key point of the Companion Guide is this idea of routines. So if you want to craft really effective and meaningful learning experiences, a great way to do this at this very early intervention age or even the preschool age is to think about daily routines. For example, meal time can coordinate vision, social interaction, cognition, communication, fine motor skills. So a lot of the suggestions or interventions that we have in the Companion Guide are organized by the kinds of routines that you might experience if you were to go into a home where a young child is interacting with their family. And then lastly, a key point of this resource is that we really want to make sure that learning opportunities for the families and the children are optimized and that this is the place we start first. So we're not trying to fix or change families or children, but really fix or change the environment. So what do we mean by "optimize"? We want things to be perceptible so that people can take in information. We want them to be meaningful so people can engage in learning. We want them to really think about not being too distracting, not having too much sensory input, such as background sounds or anything that could be overly taxing to those very early cognitive domains that are coming online for these young kiddos. And then the last point I want to make before I pass it to my colleague, Kitty, is that one of the things we're outlining here in our story of this collaboration between the specific research and resource that came from the research is called design-based research and the idea here is we didn't want to just create a resource and then put it out in the field and then just leave it at that. What we really wanted to do with the CVI Companion Guide is to create a living resource that we could learn about CVI from. So when you hear Kitty and Andrea talk today, just know that me and Debra and Amanda, the three who created this resource, we are using this collaboration as a means to better understand CVI and create even more resources that we can then provide to the field to help all of you out there working with these families. So with that, I'll hand it to Kitty. >>Kitty: All right. So I'm just going to briefly go over kind of -- expand a little bit on what Liz mentioned and how this collaboration came to be. NMSBVI, New Mexico School for the Blind and Visually Impaired got involved around 2019 between conversations between the authors and our retired birth to three coordinator led to this idea and exactly what was the same with the design research. And so from these conversations, a draft copy of the CVI Companion Guide was given to our birth to three early intervention team as well as to our preschool program. And really both programs agreed to participate in just kind of that data collection that was kind of an interest to folks about how we were going to use it or how we were implementing it with families as well as in the classroom. So even though this guide is not designed -- or focuses on early intervention, we wanted to kind of see how applicable it would be to the early childhood ages. So there was really no prescribed way to do it, it was just to try to use it. So at the beginning, a few people from each program started using it right away and both programs really found that trying to incorporate the CVI profile categories, which we'll go over next, into our functional vision report. So birth to three started including the categories and their transition reports as well as beginning to use the parent interview questions during home visits, which we'll give more examples of. And then at the preschool, very similarly we took the CVI profile categories into our functional vision template and then started putting the interview questions into the template as a way to kind of help -- prompt teachers to think of areas to assess or how to think of the visual functioning for the student. In March 2020, literally exactly one week before everything shut down, Dr. Lueck and Debra Chen came out to the school to do a more formal training for staff and so right as we were all about to implement it, everything shut down, which presented a really great opportunity for the birth to three team where the switch to virtual home visits gave them an opportunity to create the CVI study group, that it's been named, which started meeting weekly. And they went through the Companion Guide chapter by chapter or page by page discussing the information, asking each other questions and, most importantly, giving examples of manifestations and routines from their own case loads and so it really became a large group effort in terms of understanding the knowledge of CVI but also how to recognize it on their caseloads. And the value of this group has been so tremendous that they still continue to meet once a week to go over any new and profound CVI information as well as just to catch up and ask each other questions. So the pandemic presented quite a barrier to the preschool program, being able to implement it and go through it and so we are actually, now that it's been published and available through APH, our preschool program is beginning this study group process with Andrea's leadership so that we can all go through the guide more thoroughly to really understand the information in it. And then, as Liz mentioned, we've also been doing research with parents and provider interviews but today is much more of a focus on the practical implementation of the guide. >>Liz: Okay. So let's show you a little bit of the guide and we can't show too much because it's a quick hour today but we do want to show the parts that have been receiving the most traction in the field, the parts that we hear are really valuable to TVIs and others who are using the resource. So the first thing we're going to show you is the CVI profile and manifestations. So manifestations are basically how we're seeing CVI show up for these kids. And currently, as the published resource has, we have 16 of these manifestations and when you dig into the manifestations, they're either further subdivided -- I think there's 58 different points of consequences of CVI. And, you know, here we have a slide that's showing the 16 overall functional categories or manifestations. And this presentation we're just going to get into one, which is response to environment. But one of the things you might notice in this list is that some of these overlap with ocular impairments so, you know, they're not necessarily unique to CVI but these are things that we're seeing out in the field and in the research in terms of how CVI manifests. Another thing to note too is this list isn't exhaustive. We had to stop because we had to make our resource, but more and more are being identified. So one of the things that the CVI Companion Guide does is explain each of these 16 categories in depth and gives you very specific things to look for in each one. >>Andrea: Hi, everybody. I'm glad to be here. Before Liz continues, this slide in front of you is just something to set the stage, so to speak. So it's a picture of a little plant that's growing through a crack in the concrete and there's a quote by George Carlin that says I like it when a flower or a little tuft of grass grows through a crack in the concrete. It's so heroic. I almost got rid of this slide but Kitty and Liz didn't let me because it turns out it is kind of an important concept. So when a little plant or grass grows through concrete, it indicates that that plant has pretty strong solid roots. And the same is true for a small child. In order for a small child to grow healthy, strong, and confident, and sometimes against odds, like growing against concrete, they have to have a solid root system and that's of course their parents, their family. So we as practitioners sometimes need tools to help families build their roots. And one of the goals, one of the main goals here today is to show how the Companion Guide helps do just that. It guides practitioners to assume the opposite of a cookie-cutter approach. Because a cookie-cutter approach will not work with kids with CVI. So we hope to highlight some ways that it helps hone in on a given child, but the whole child. Never just the vision piece. The whole child because CVI is interrelated with everything else, developmental, socially. Related to family routines and dynamics, et cetera, et cetera. And remember this presentation is called the CVI Companion Guide, collaboration and curiosity. Ultimately we as practitioners have to tap into our own curiosity with the kids we work with. We've got to be intrigued by what makes them unique. If we can spark that same curiosity in their parents or caregivers then we're doing good work. We're helping to begin fortifying those roots. >>Liz: All right. So let's look at one of these manifestations as promised. So we're going to focus on response to environment. Going off of what Andrea said about being curious, let's say you're out in the field and you're working with a family and, you know, through that collaboration with that family you realize that, yeah, there's some different responses around different environments. Like there's some variation how this child responds in different environments. Well, this might cue you to look at the part of the Companion Guide that talks about response to environment. And then you could look under this this manifestation for those possible consequences and be curious. Ask yourself is this ringing true for this child and, you know, as I read through these consequences, does this help me better understand the child and the child's vision. Things to think about when you're thinking about the manifestation of response to environment is does the type of environment affect performance? So what this could look like is that the child might appear less stressed in a quiet environment. Quiet or still in a quiet environment or become more stressed, fussy, or fearful in a busy environment due to sensory overload. Could there be a response to the environment related to crowding where crowding could impair function. And, you know, when perhaps objects or people are more clearly defined or spaced apart, that also has some effect on how they are in their environment. And then some other consequences. Familiarity with environment improves function. So is this something that you noticed perhaps the child is a bit more relaxed in a known environment, even if it is crowded, like a family gathering at a grandmother's house. Are they distressed in novel environments, especially crowded ones? And are there difficulties functioning in environments? So navigating an environment or going from room to room, remembering where items have been placed. You begin to see the bigger category here and these other points that you can look at to help you kind of think if this manifestation is connected to a particular child that you're working with. >>Andrea: So I can't say enough about this particular manifestation, response to environment. Because this is where all the variability is. So just like every child with CVI is different and constantly changing as far as their moods, their emotions, their sensory states, so is every environment different and often changing. So they can have a different number of people, amount of noise, the kind of noise, smells, et cetera. So, anyway, you have the possibility for the perfect situation -- for me Saturday morning that was reading a book next to a lake here in New Mexico, a rare opportunity. But that was a perfect situation. All the way to the perfect storm, which for me personally would be not sleeping really well, waking up with a headache, and then having to go run an errand at Walmart or something like that on a Saturday afternoon. That would be the perfect storm. And there's everything in between. And so children with CVI are particularly sensitive to all the potential variability. The Companion Guide in the first chapter says that the composition of an environment can mean the difference between seeing and not seeing or hearing and not hearing. Can mean the difference between seeing and not seeing or hearing and not hearing. And we're learning from lots of adults lately, we're being given the benefit of learning from adults with CVI more lately than ever before and several adults have explained that their vision can be affected, not only by their internal states but also by external circumstances. So I like to highlight some quotes from parents because that's where we learn the most. We learn the most from parents and these parent interview questions, we'll which talk about in a bit, help us learn about each particular child. So one quote is she likes when there's a lot of activity going on but only if it's a familiar environment. Another one is voices and music get his attention and can keep his attention but only if the environment is otherwise quiet. Another one is she does fine in any environment as long as mom or brother is around. I just love these because they're so specific to every child. Another one is he has a sweet spot. If it's too quiet or too boring, then he'll whine but if it's too busy or too noisy then he'll tune out. Of course only parents and caregivers are going to know these kinds of details. So the fact of the matter is all of the other manifestations, the other 15, are more or less impactful depending on the environment. So the slide shows some kids on a field trip. They're crossing a bridge together in a line. And then the bullets are that, you know, it's familiar versus lun familiar environments. Things that I just touched on there. But the thing I wanted to hone in on is the idea of multiple modalities. So when a child's able to access more than one sensory mode, all the other circumstances got to be right. I have a specific example of a little guy I used to work with. At home his favorite activity in the whole world was a game of chase with his brother and his dad. And it involved everything you can think of. There was a lot of vision. There was a lot of noise or vision to the extent he was able to use it and conjure it. But there was a lot of noise. There was movement, laughter, communication. So that was his favorite activity at home. But if you took him out of the home, there's no way he could pull together his nervous system to use those multiple modalities. He was best whenever possible learning or participating with one sense at a time. >>Liz: All right. So now we're going to move on to another part of the CVI Companion Guide. We gave you Al little taste of one of the manifestations. Let's give you a taste now of the developmental domain section. So in the CVI Companion Guide, we have a variety of domains. Social and emotional communication is the one we're going to feature today but in addition we also have cognitive. We have fine and we have gross motor as well. So for social and emotional developmental, in the CVI Companion Guide what we do is we spend some time talking about how very young children with visual impairment develop socially, emotionally, and how their communication develops. And we try to address what this looks like for learners with CVI. We try to kind of tease apart ocular visual impairments and CVI and what that might look like. So for the social-emotional development section, we focus on two abilities that are really important at this young age. The first is to create and maintain social relationships and then the second is to regulate a range of emotions. And as I mentioned before, one of the things that was really important for us was to really help people in a way that they could grab this off the shelf. You know, if they're working with a kiddo and they just know there's some social-emotional or communication needs, they can open it up real quick and just have some bulleted information about what they could be looking for in terms of the social-emotional and communication development. So here is just some list of things that are important to social-emotional development that we focus on in the resource. So -- and I'll just go to the right here and get relationship-based interventions. We talk a lot about how children at this age interpret and respond to emotional and communicative cues that they get from their environment and caregivers, how they identify likes and dislikes. How caregivers and other people in their world can encourage visual attention, the importance of giving different cues, whether those be auditory, visual, touch. And the importance of playing call and response or turn-taking games as one routine or one way to intervene, if you're looking to support social-emotional development. >>Andrea: David, if you could go ahead and just play the video right off the bat. [ Video ] Short and sweet. So this ten-second video highlights both of the ideas Liz just shared. The child's ability to create and maintain social relationships, in this case with her big brother, and to regulate a range of emotions. Again, in this case there's some regulation going on between brother and sister. And the reason I wanted to share is is not only because it's so sweet, but imagine that you are walking into a home visit and this is what you encounter. This is what's happening. In most cases the parent would probably tell the little boy, okay, sweetie, so and so is here. Why don't you go to your room. But what I want to say is that is a golden opportunity. What I would want to do at that moment is say can he just stay for a little bit? Can he keep doing what he's doing? And then we could talk about how awesome it is. We could give brother kudos and high-fives and help him feel empowered for what a good big brother he is and what a good teacher he can be for his little sister. And if that's what you accomplish in your hour with the family, you've done great, great work. You can be happy. So the other thing that's on your slide there is just a couple of things, a few things from Stanleygreenspan.com. Stanly was a child psychiatrist and had many contributions to the field. So follow the child's lead, enter the child's world, and join in their emotional flow. Challenge her to be creative and spontaneous and expand the action and interaction to include all or most of her senses and motor skills as well as different emotions. Their sensory state and feeling of safety and comfort will usually dictate everything else. Of course relationships play the main role in these things. And, again, the video please, David. [ Video ] There was a trunk. A trunk. And the trunk on the tree and the hole in the ground and the green grass grows all around all around and the green grass grows all around. So of course there's all kinds of great strategies adults use in this little activity. If we had more time we could highlight those but I'm going to guess they're pretty obvious to most of you. The colors, the tactual support, the repetition of the lyrics, et cetera, et cetera. But what I wanted to highlight here is the most important part. This child knows that these two people are truly present with her. That's the key. I'm going to guess that she feels safe and happy. It's pretty clear she's alert. And those things are mostly true because this is a shared enjoyable experience and that puts her in the optimal learning space. So the social-emotional piece cannot be overstated. Oops. We missed a slide. There we go. So what I'd like to offer here are some examples illustrating how the components of the Companion Guide can be coordinated to guide interventions, and specifically how functional vision interventions can be paired with a more general approach to supporting a child's global development, the big picture within the context of his or her daily routines. So as we know -- and Liz mentioned these things -- it's important to know a child's likes and dislikes and one of the reasons is simply because a preferred activity can be used to work on any of the developmental domains and this is a huge takehome part because activities have to be meaningful and motivation. For many of us our brains actually don't get that excited with finishing something, with task completion. What they get excited about is being motivated. That's when our brains light up. So on your slide there's a picture of a little girl in a pink hat standing at a piano with her hands on the keys. And in this case the piano itself was the motivator. There's another picture of a toddler girl holding a tactile book and she's exploring it with her hands while an adult helps her maintain a sitting position. And in this case the textures in the book were the motivatetors but also the fact that a trusted adult was helping her. Then we have a picture of a gift bag, red and silver, and a picture of a toddler reaching with her right hand to get a red bow on the left side of her highchair tray. In this case the child has CVI, cerebral palsy, and a hearing impairment. She sees better on her left side but her right hand is much stronger so that poses a little bit of a challenge. So let's talk a little more about meaningful activities. So I already knew that Christmas was meaningful to this family. This happened last December. They had a tree up and lots of gifts underneath. But I wondered how much of the whole Christmas season she understood or how easy or no it had been to expose her to Christmas-y things. I wondered how she would do on Christmas day when it was time to open gifts. So I took a bag, similar to the one in the picture, and left it with the family. So how can we sneak learning opportunities into opening a gift bag? Well, turns out there's lots of ways. So Liz mentioned providing anticipatory cues. I say we because the person from the school from the Deaf was also present with me at the visit and of course mom. Mom was the center. And we got the tissue from the bag and then we started dropping it so that it would float down to her tray. It turned out she really loved that. Then it gave us the opportunity to say, red, set, go. Or one, two, three go and provide those cues. Because she loved it, it turned out to be a preferred activity which can be used to elicit communication, like more. So we were able to sneak that in. Turn-taking games, it was easy to do that. Of course we were encouraging mom to do as much of this as possible. We pointed out that the red bow stood out nicely against the white tray, explained the benefits of being positioned well in the highchair. The Companion Guide also mentions the benefits of tactile and kinesthetic feedback. In this case the highchair tray fit snug against her trunk and she was able to rest her forearm on the tray and slide it and maintain contact while reaching. Of course you might not use the words tactile and kinesthetic feedback with mom but I did point out how the tray helped her feel more supported and helped her with the reaching. So the truth is that functional vision interventions and learning opportunities can be embedded in everything. Mealtime, bathtime, at a birthday party, at a neighbor's house, feeding the cat, et cetera, et cetera. So we could spend all day talking about fun ways to tap into a child's interests and strengths and then include the child in all daily routines. But here's the important part. All the while considering and addressing not only their visual needs but their motor needs, their communication needs, their sensory needs, et cetera. Okay. Now this is quick examples about putting it all together in the community setting. So there's a picture in the middle of what looks like something like our circle time that we hold at play group. It's a group of kids that are in fairly close proximity to one another. They're being led by an adult and everyone has their arms up in the air. It looks like they're having fun. We can assume that there's a fair amount of noise. So the Companion Guide offers all kinds of ideas as to how we might gradually get a child with CVI to first tolerate this kind of situation and then actually enjoy it and then maybe even anticipate circle time at play group. And then there's another picture of a child in his gait trainer. He's reaching towards some paper -- it's outdoors. This particular visit took place at a local park, we planned it. Before the visit, the mom sent me a text message and it said do you have any paper in your car? I know that sounds weird. I'll explain later. But the thing is it didn't sound weird. I figured it must be something that motivated and sure enough, it was. As you can see in the picture he's very motivated by paper. And one last picture on this slide is a young boy and his father sliding down a slide together. And in this case dad was the motivation factor. Dad made it a fun and safe experience. >>Kitty: So I'm going to piggyback on Andrea's routine examples but more at the preschool level. And where we are really continuing to work on and address a child's visual needs through their routines and environment, as mentioned. So we're going to go from right to left across the slide. The first picture is a preschool girl in glasses and a mask sitting at a table during group circle time and her face is enlarged and shown on a CCTV for the rest of the group to see. I wanted to provide this example as to how we can provide direct instruction to address some of those visual skills and visual processing things that are needed. So this example is working on facial recognition and facial expressions with the CCTV not only to enlarge the features but to really isolate the facial feature being addressed. The next picture is of a parent holding a child whose face is tucked into the adult's neck. And parents often mention that their child will not walk or look up when they take them to unfamiliar or busy places, as we've been talking about. But we see very minimal issues at school. They have no problem navigating or running around the school or the classroom but they won't do it outside of a familiar environment. And so we continue talking about the impact of the environment, sensory overload, but also really about using repetition to build that familiarity and helping parents understand that they may need multiple visits before they can use their vision and motor together and that's where we see this manifest in the classroom as well is needing a lot of repetition or familiarity with materials for more like fine motor and visual motor tasks. And then we also use field trips to try to really observe for ourselves how our students are in unfamiliar environments, since we don't have the ability to, you know, meet the family at a park. We kind of need to plan it as a group outing. And so this last picture is two boys playing -- riding a motorcycle video game at a Dave & Buster's which to me, that sounds like my worst environment to function in. But this was a planned experience to address the response to environment category for this classroom for children with ocular as well as CVI. And it addressed not only the response to environment but a lot of other social-emotional things as well. So the boys are riding and looking up at the racing avatar on the screen and at first glance this looks kind of counterintuitive to busy unfamiliar environment because the environment is filled with games, neon lights, bright colors, and just a lot of clutter. But what we don't see are other people because the class went to 10:00 a.m. or something on a weekday when it was just opening so there was no one else there. They were able to kind of remove that added component of crowds and other people and just leaving the clutter of the lights and games to see how these students would take it all in when they arrived. But in addition to that, the teacher also spent days, maybe even weeks kind of pre-teaching a lot of the experience to the classroom. So talking about an arcade, watching videos on YouTube, practicing putting tokens in the slot, listening to video game sounds, practicing our own light room to show the type of lighting they would encounter, ordering food. So all this pre-teaching could make most of the situation at least a little bit familiar to these students rather than it all being brand new. And then in addition, as we were talking about the likes and dislikes, these boys are obsessed with motorcycles and cars and anything with motors. I know looking at this picture, for these kids this might have been the highlight of their year to feel like they were driving a motorcycle. This addresses that social-emotional domain where this is a motivating enjoyable shared experience for these two friends that they can now talk to each other about and it is also a similar common experience that other peers their age may have that they can then talk to other peers about. Focusing on providing experiences that give that shared experience can be so critical for our students. And so in this entire field trip the teachers were able to gather so much -- and O&Ms, gather information on really almost every area of the CVI profile and addressing every domain in some way. And so once again I cannot stress enough the importance of those community outings and unfamiliar places for all ages. So, perfect. Tips for getting started. Hopefully you were able to get a copy of the Companion Guide to see all these little components that we've been talking about. So we're just going to briefly go over some more tips on how we think you can get started. >>Liz: This last section really is to entice you more to dig into the Companion Guide and show you some of those tools that were really designed with you in mind, knowing that you're busy. Your caseload is large. You have a lot of different things you're juggling. We created some interview questions that you could use. Many of these are informed by those manifestations and those developmental domains. And this will get you able to gather some real rich information about the child and learn about their CVI. So some examples of what these questions are, you know, what do you think your child sees? How does your child search for things? What are your major concerns about your child's vision? We really see this as a resource that you can skim and just tick off maybe a couple of questions that you can ask at that right moment. >>Andrea: David, this is the one that you can stop at 13 seconds, please. >>What are your major concerns about the vision? >>That I can't tell a difference between if you can see something or if he is not -- if he doesn't care about it. So inattention versus -- >>Andrea: Okay. In the interest of time, we stopped it. So this was my first go at asking some of the -- there's a bunch of questions, actually. We're only highlighting a few here. This was pre-COVID. I was with this family pre-COVID and so it's been a while already. But one of my favorite things is when a parent answers a question with a question. In this case the question I had just asked was what are your major concerns? And the mother said, well, I'm not sure. Is it that he can't see or is it he doesn't care to see? And that right there opened a door to a lot of conversation. I wish I could show you the whole hour. It was an interesting conversation. I pointed out to mom, that's a brilliant question. And that also helps her get intrigued. So now we're in this really cool conversation. So in addition to facilitating that shift from what's a natural fear -- parents are fearful when they get this diagnosis. When you engage them with these questions, you help facilitate that fear from -- I'm sorry. Facilitate the shift from fear to curiosity. You engage and you empower parents. It helps build rapport and trust between you and the parent. Parents get introduced to CVI and sensory language and parents get to start realizing that they know more than they thought they knew, and that's the best possible thing. Of course, they are the experts. Of course you get important information that is really valuable for your functional vision reports. >>Liz: The next resource we wanted to share are the sensory channel questions. And whereas the previous questions were really focused on getting that good information to round out that CVI profile and all those great observations that you're going to make. The sensory channel questions are organized around the main sensory channels and they help you better understand the child's development. So we have categories of questions for sight, sound, touch, and multiple modalities. And here's just a sampling of two questions that are under sound but there are many more. What types of sound help the child become calm and attentive? Does the child respond immediately to sounds or speech or is there a delay in the child's response? And one thing I wanted to add too is we've heard from those in the field who have used the resource that these questions or this part of the resource in particular is very useful for those learners with CVI that might even be a little bit older. Although we didn't craft these questions with those beyond preschool in mind, they seem to work well for those students as well too. >>Andrea: So this slide is just to take a closer look at how the questions can be used with parents and then incorporated into a report. Again, the two questions that you might ask are what types of sound irritate Zane and what types help him become calm and attentive? Just from those two questions, you can get a narrative for your report. The use of sound supports Zane's learning but he can't always localize it visually. He recognizes familiar voices and loves upbeat music and toys that make noise. These things help facilitate his attention and motivation to stay engaged. His favorite songs are baby shark, if you're happy and you know it, the Gummy Bear song, and the ABCs but only if it's sung faster than usual. He's irritated by slow music. And the bingo song irritates him. He is very clear about what sounds he likes and doesn't like. This should point out the uniqueness of each child. The next slide is more of that. Okay. So this is a story about an almost 3-year-old boy named Jack. When Jack was born, he had a brain bleed and some seizures but he's been very healthy since then. He eventually got diagnosed with CVI and optic nerve atrophy. Jack lives with his mom and a 6-year-old brother in a small home in a rural area of New Mexico. He visits his dad sometimes. Jack loves his yellow truck. He can usually find it by himself as long as it's no more than five feet away. Usually he needs something or someone to make a noise in order to see things at this distance. But anyway, his yellow truck is his favorite toy and he loves to push it around. Mom thinks yellow is his favorite color but she's also noticed that he absolutely loves shiny Christmas ornaments. Jack gets a little upset if his 6-year-old brother leaves toys lying around or if mom changes the arrangement of the furniture because it changes how he's able to play and enjoy the space. Jack is pretty independent at home when he plays. He doesn't hesitate to explore boxes or drawers or bags but mom noticed he is very methodical for a 2-year-old. He takes one toy out at a time and carefully inspects it with his hands and his eyes. He also loves the family's new puppies but only if they're inside the house because when the puppies get a chance to run around outside, they run around so fast that Jack can't see them anymore. Jack is full of life. He enjoys music and he'll dance, dance, dance. At home he loves when mom or dad swings him or throws him up in the air. He's brave going up and down the steps at home. He makes sure he has a good grip on the railing and goes down slowly, making sure he feels each step carefully with each foot. He's willing to try new things like jumping but only if mom is there to hold his hands and reassure him. Any time they leave the house, Jack's personality changes a bit. Sometimes he just looks down or might even cover his eyes. He sometimes gets so upset that he'll throw himself down on the ground and scream or cry. He gets a little bit better -- he's been a little bit better at using words. He'll say Jack mad. Mom is glad he's finding words to express his feelings but she's worried. Once he gets upset he'll bump into things and the situation just gets worse. Okay. I'm going to stop there. I have never met Jack. I just wrote this two or three-minute story about him based on a functional vision report written in large part using the Companion Guide profile, categories, and the parent interview questions and of course in truth my story could have been five or ten minutes but I wanted to stress how important it is that the report tells a story so the reader can learn about the whole child, especially when the child has CVI. His or her CVI manifestations mean nothing on their own. They're a part of a much bigger, complicated, yes, but always beautiful story. >>Kitty: So this is just a quick summary slide of all these lessons learned from our collaboration but I think first and foremost it's all the lessons learned from our families and students with whom we work. One thing that the Companion Guide, we really learned that the Companion Guide offers multiple different opportunities to learn about CVI for families that are interested in learning in different ways. Whether they like the brain science or routines or just forms, there's kind of a little bit of everything in there, as Liz mentioned. It's really designed to be pulled off the shelf and you can find the little piece of information that you might be looking for for a family. Collaboration with other providers is really critical because every child with CVI is different. And really highlighting that CVI can be very complex but our intervention strategies can be simple. And I think we also want to make sure that you all as providers give yourselves the permission that it's okay to be simple and it's okay to ask questions and kind of not know what you're doing. Along the realms of CVI because we're all learning it as we go and so just stay curious and positive and focus on what you can do and, you know, we're all here together. >>Liz: Thank you so much for this Coffee Hour. I'm going to put in the chat our names again and e-mails. If you have any questions or you're curious to ask us more questions after this, please do so. We love collaborating with those out in the field. Thank you. >>Kaycee: Awesome. Thank you all so much for being here. We did have one really quick question. Have you used the Companion Guide with older students? I think, Kitty, you said that some people had been using them or maybe Liz said that. >>Kitty: So we have tried to take bits and pieces of it into our preschool classrooms. Like I wish it was marketed more as an overall CVI resource versus an early intervention because I think that it's absolutely applicable. As we've been saying, you can kind of take a little tidbit and it gets you thinking more and more of what you could be doing with students. I think it's very applicable even though the examples in it are more specific to early intervention and home visits. It's through APH. Very easy to order. But make sure -- you want the print version because that's what we've been waiting so long.