Change Makers: A Podcast from APH

Educational and Rehabilitation Aspects for CVI

• American Printing House • Episode 121

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Narrator:

<silence> Welcome to Change Makers , a podcast from APH. We're talking to people from around the world who are creating positive change in the lives of people who are blind or have low vision. Here's your host.

Sara Brown:

Hello and welcome to Change Makers. I'm APH's Public Relations Manager, Sara Brown, and on today's episode, we are learning about educational and rehabilitation aspects for children and adults with CVI. We're going to learn why CVI intervention is so critical and what APH products can help those who have been diagnosed up. First, I have Amanda Lueck here to share why early intervention is so important. Hello, Amanda, and welcome to Change Makers .

Amanda Lueck:

Thank you so much. I'm happy to be here and I'm happy to discuss this topic. I think it's a very important topic.

Sara Brown:

It is, it is. I think so too. And before we get into that topic, would you like to introduce yourself and let our listeners know what it is that you do?

Amanda Lueck:

Um, okay. Well, I'm Professor Amanda, Professor Emerita, Amanda Lueck from San Francisco State University. I retired a number of years ago and , um, be because I wanted to focus so much on cerebral visual impairment, I needed to have the time to do that. So since that time, I've worked on a number of publications and have been doing work and doing a lot of presentations about CVI because , um, cerebral visual impairment is the major cause of visual impairment of children in the schools and younger in the United States and in other developed countries. And it's increasing in frequency in underdeveloped countries. And the reason for this is because of all the lifesaving measures of saving children who are preterm and for children who are born term with , um, difficult , um, medical conditions.

Sara Brown:

Okay. And talk about some of the educational aspects for CVI.

Amanda Lueck:

Well, I'm gonna start with what's needed in CVI intervention for children. And the most important thing is an early diagnosis. And the reason for that is that we need to reduce collateral developmental issues that can affect all developmental domains in children as they're growing, because problems with the visual brain can affect gross and fine motor development, language development, social development, cognitive development, as well as , um, hard to detect visual perception issues that may not show up until the children are older. But if you're aware that they might have them at younger ages , um, some of these can be addressed. We're at the infancy of understanding the effects of intervention for children with CVI because there haven't been a lot of , um, of , um, studies looking at the effectiveness of interventions. So people are trying things. Sometimes they work, sometimes they don't. But what is important to understand is that , um, we have to look at the root causes of the array of behaviors that might arise with CVI to determine what's caused by CVI, if anything exists, and if any of these behaviors exist to begin with, because sometimes they can be glossed over or if there are underlying conditions creating those behaviors. Or there can be a combination of CVI and other under underlying conditions contributing to the behaviors that people are seeing in children.

Sara Brown:

Now, can you talk about CVI in adults?

Amanda Lueck:

Yes. Um, so adults , um, can have CVI, they can have them from, from brain injuries. Um, they can result from strokes, concussions, all kinds of things. Um, they may call it something a different like traumatic brain damage, but they still may have some of the same soft signs that you'll see in children with CVI. So adults need a thorough diagnosis for ocular and cerebral visual impairment to understand those soft signs and their ramifications so that the adults don't think that , um, they're , um, having behavior problems or that it's related to learning disabilities or it's related to cognitive issues. But again, it could be related to effects , um, from a visual and visual perception as well as some of these other issues. And because CVI is a relatively new field , um, medical and education and rehabilitation , people are still learning how to understand this and how to work with the people who have it and their families.

Sara Brown:

And what about rehabilitation for CVI?

Amanda Lueck:

Rehabilitation for CVI is a , is is an area that also needs more research. Um, the Veterans Administration have been doing a lot of work with , um, veterans who are coming back with , um, injuries from blasts and, and other things , um, where they were having a lot of trouble and they were doing a lot of research in this area. Um, and it , I'm not sure that it's filtered through to the general , um, community, but , um, that's where a lot of the work in CVI needs to be done. And another place where it needs to be done is the transition of kids from school going into rehab programs because , um, the one example would be , um, a mother talked about how her son went from school to rehab and he had this condition called simultaneous agnosia where , um, it's not possible for them to differentiate , um, more than one or two objects at a time. Um , it's, it's kind of like visual clutter, but um, it's a little bit different. Um, if anybody's interested in that, you can find a lot of information about that on the website called CVI Scotland. But this, this , um, young man was given a job in a supermarket where he had to sort out , um, uh, groceries and put 'em on the shelf, but he couldn't distinguish the objects on the shelf because they were so close together and so compressed. So he was given a job that was really, really stressful for him. And so the mother found another job for the child. Um, and this can happen with, with other adults, adults who have trouble , um, going into crowded areas, especially those that are unknown and they can't find their way around or they get lost or they feel overwhelmed. And so there needs to be some ways for people to be able to deal with this. Also, for adults with CVI working on reading issues and math issues, getting appropriate assistive technology , um, understanding the social ramifications of their CVI and how to deal with it. Um, if they need to learn a root , what are the methods that they can use to determine the root and find the root ? If they can't see the landmarks, not because they have reduced visual acuity, but because they have trouble distinguishing items in the field of vision that might be , um, not blurred, but just not there.

Sara Brown:

And I understand there's an APH Press book called the CVI Companion Guide. Can you talk a little bit about that book and how it's a really vital aspect for for TVI's out there?

Amanda Lueck:

Well, we developed for APH number of years ago the developmental guidelines for infants with visual impairment. And we have a small section in there about CVI. And , um, things have changed so much since we wrote the developmental guidelines that we wanted to write a companion guide to that, that a addressed CVI, we couldn't just do a small little thing on it. So Dr. Chen, Dr. Elizabeth Hartmann, and I , um, fortunately they agreed to , um, develop this with me. They had walked , worked on the developmental guidelines. I mean, there was no question they wanted to do it. It was wonderful. So what we did was we reviewed all the research that was related to CVI in young children and looked at how it could affect the developmental domains that I mentioned earlier. So we look at gross and fine motor language, social emotional , and cognitive development, and how all those areas can be affected by not just visual ocular conditions, but by brain-based conditions that cause a lot of visual perception issues. And what we've found that there are myriads of things that could be affected, and that's why it's so important to , um, get as early a diagnosis as possible. And in that book , um, had to put it somewhere, I had been looking at all the manifestations that are possible in CVI and all the research up to that time. We finished writing the book in 2019. It wasn't published, I think until 2021 or 2022 because of COVID 2021, 2022. Um, so there are more now than what's in that book, but we found , um, 15 areas, 16 areas , um, that could be affected by cerebral visual impairment. And under each of those things, there are about 55 things that could be affected. Um, so we wanted to get that out so that people are aware of what's available. So we have , um, chapters that discuss how a child's development can be affected by not just vision, but by CVI in those different areas. We have checklists that interventionists can use to , um, work with families to check off , um, what manifestations might be affecting a child, and then how to address them. Um, we have , um, guidelines for , um, developing interventions that , um, infuse interventions into daily routines. And so we really wanted to get this out because we were seeing so many children fall through the cracks because of there's so many areas that could be affected and some of them could be addressed. Now again, we don't have intervention studies of , of effectiveness of everything. And that's the next step for the field to do is look at the effectiveness of all these interventions. But again, it takes time and parents are incredible in terms of understanding their children and knowing which interventions work and which don't work for their children. So we have interview questions for families and want families to be an integral part of the whole intervention process. And I, I think this is important across the whole age range of people with CVI. One of the things that we've , um, added onto recently , um, because of what we're getting in terms of feedback on the , um, companion guide. And we have a group of people from the New Mexico School for the Blind , um, implementing the developmental guidelines and doing research on the developmental guidelines. And , um, this , uh, group also includes , um, Dr. Hartman from , um, LaSalle University and Corina Bauer from , um, Massachusetts , um, what is it here , eye Institute or anything, part part of Harvard. So we want to try to get some effectiveness studies on this and not just talk about it off the top of our heads, although I'd like to, but it's, it's not good practice. Good practice is looking at the effectiveness of things. But what we're writing about now and talking about now is reflective practice, and that is examining practice. This goes across the age range, really examining practice, looking for reasons that may be underlying , uh, the behavioral manifestations of CVI, making adjustments to interventions based upon the evaluation of the effects or the non effects because the intervention may not be effective and it shouldn't be continued or it should be tweaked. And really getting deeper into CVI, it's, it's like , um, we would love to have given a cookbook for CVI if you see this, do that. If you see this, do that, but you can't. Um , because the causes of the CVI may be different and they may manifest differently in different children, depends upon where the brain damage is , how extensive it is of what age the person got the damage, did they have typical vision before and then got the damage and then something happened so that they can have some idea of what the world was like before they got the CVI. It's, it's really a different way of seeing and it's hard to intuit this different way of seeing. Um, if you look at the , some of the new stuff that's coming out on CVI, you'll hear a lot of , um, first person reports , um, about how CVI has affected them , um, lived experiences people are calling it. And you'll find the subtleties of those lived experiences. So those 55 things we've identified , um, as CVI manifestations can be expanded way beyond that because it's so subtle and that makes it difficult, but it also makes it fascinating and it also makes it so life changing if the pe if this can be identified for children and adults and if interventions could be applied and it may not be interventions that affect , uh, improve skills, it may be interventions that used , um, non-visual techniques or other techniques. Um, there was a big thing a while ago about teaching braille to people with CVI. There are people with 20/40, 20/50 vision who cannot read with print. It's too hard for them. They've had tons of training but can read with braille. So if someone is not learning, it may be that the intervention is not appropriate.

Sara Brown:

And before I let you go, is there anything else you would like to share for our listeners out there?

Amanda Lueck:

I wanna say that , um, I think that orientation and mobility assessment, it's pretty critical for everyone to rule for CVI to rule out or address the soft signs of CVI as they can affect safety and effective travel. Whether it's , um, being able to look at landmarks , um, people with CVI can bump into things very easily if they have something called visual neglect where , um, you know, I can't see past where my arm is now, but somebody with CVI may not be able to see past where my arm is now as it's brought in closer to my nose. And that's a brain-based problem. It could affect the upper field, the lower field, the left field, the right field. It could affect things in, in all different ways. People with CVI may have trouble locating the , um, direction of sound sources there . They may have difficulty , um, with fast speech or slow speech depending on what they're doing or their age or whatever. Um, it's important to consider the use of the long cane or other mobility aids as needed. Um, it's really important to get feedback from the people with CVI themselves. And if they're not able to give you their personal feedback from their caregivers, really check in with them about what's going on because they know.

Sara Brown:

Amanda, thank you so much for coming on and talking to me on Change Makers.

Amanda Lueck:

You are most welcome. And thank you for inviting me to present today. I appreciate it and I hope it helps some teachers and some children.

Sara Brown:

And for those who want additional information, I've put links in the show notes to CVI Scotland and the APH Press book , CVI Companion Guide. Now we're talking about what APH products are beneficial for those with CVI. I have APH'S Product Manager, Tristan Pierce here to share more. Hello Tristan and welcome to Change Makers .

Tristan Pierce:

Thank you Sara. Happy to be here again.

Sara Brown:

And before we get into the interview, would you like to share and introduce yourself, what it is that you do at APH?

Tristan Pierce:

Okay. Uh, well for the last 24 years plus a few months , um, I have been a product manager in the educational product innovation department. And for those who have been with APH for a long time, you formerly have known that as the educational research department. So , um, for 22 of those years I developed products focusing on visual and multiple impairments along with physical education and sometimes art projects. Um, the last two years I have focused on modernizing some of those products,

Sara Brown:

Talk about some of the products that APH has that provide assistance for CVI rehab and education.

Tristan Pierce:

Okay , um, let's start with the LED Mini-Lite Box, which of course can be used with both , um, all learners with low vision and also those , uh, learners with CVI. So there are so many products that teachers and learners can use with the LED Mini, and when we designed it, it was important to make the lamp and the plate the exact size as the original mini light box because over the years, APH had created like a multitude of products to fit it. So the goal of the redesign was to make it small enough to fit on most wheelchair trays and equally important, be light enough that some commercially available tabletop mounts and wheelchair mounts could support it. Now, APH does not sell mounts, but the mounts that can support the weight of the LED Mini are listed with links on the product shopping page . And we, we chose to make the unit black, so it would be less visually complex for low vision learners, particularly those with CVI. And , um, I have to tell you, really, there are just so many items in the light box materials levels one and levels two that work with the LED Mini and are also very, very, I mean, very important and can be used for those with CVI as well. So , um, when testing the LED Mini, I saw children repeatedly, they would localize visually and then reach for the spinner mounted on the LED Mini. Um, APH has created and manufactured a spinny , uh, spinner for many, many years. And the spinner comes with two different patterns. But most importantly, I guess for those with CVI , um, we also separately sell a product called spinner overlays. And they're designed to support the individual needs of learners with CVI or low Vision, and they use light movement and increasing levels of complexity. And the teaching partners , um, can customize the overlays by creating patterns with these , um, pre-cut stickers that also come with the overlays. So , uh, another APH product that could be used with the LED Mini that's very good for both low vision learners and those with CVI , um, I would say consider using the plastic tumblers. They come in like a translucent red, yellow, green and blue. So they'll show up with the light box. And if you use them in tandem with the threading beads, which are also in those colors and are translucent or the Parquetry pieces, I think the threading beads and the plastic tumblers, I believe are in the light box level one. But the Parquetry pieces, I believe are in light box level two and like the, the threading beads and the plastic tumblers, they are , uh, translucent with those vibrant colors. So what I recommend doing is using the small light box ledge, another product we have that fits on the LED Mini Lite Box, insert that ledge onto the LED mini, and then you can line up the beads or the Parquetry pieces on the light box . And the learner can then choose and place the color matching object, whether it be the beads or the pry pieces, you can match those and put it into the Tumblr of the same color. So that's just a great activity there. There are just so many activities that I could recommend listeners check out. Um, I I really say go, go to the APH webinars on the LED Mini Lite Box. Um, they are just so full of so many great ideas. Um, there's a storybook hour where we even at one point show how you can make your own , uh, materials to put on the light box for whatever story you're telling. So , um, really I can't say enough about what's on , um, APH's , uh, webinar series that they have. So , um, moving on to , um, some other products , um, that are not light box oriented. Um, doesn't mean you might not be able to incorporate a light box into them, but typically this is just a , a different set not designed for the light box . Okay. So it is sensing and learning and Sam symbols and meaning, which are the first two products used sequentially in the APH intervention continuum. Um, the third product in that continuum is tactile connections. So , um, with sensing and learning, it is now a , a book. You can purchase the, a large print book or you can purchase an EPUB. Um , that's , um, really, really , uh, easy to do and it's actually less expensive and you can just carry it around on your tablet everywhere. And you know what, now that I said that, I have to backtrack and say that the print book is not large print because the EPUB offers the accessibility. 'cause you can change your, your font size on that with , uh, sensing and learning. It really targets , uh, sensory motor learners of any age. Okay? And primarily uses the teaching strategy called routines. Now , uh, the routines are created using objects, and it's important that the objects are, are something that the learner likes or has shown interest, you know, to, to maintain their, their interest in it. So , uh, typically , uh, learners would start with an attention zone routine and they would advance to an exploration routine and then finally perform at function routines. There are, there are assessments within sensing and learning to help you determine what zone , uh, your learner is typically at. And it's important also to know that they're called routines. And so those routines are exactly what a routine is. They kind of like need to happen the same way all the time, whether it's the approach to the routine, getting ready for the routine, maybe using a calendar box, which APH also has expandable calendar boxes , um, available in black. I believe we have discontinued the white boxes. They may still be on the shopping site, but I do not believe we're going to continue to carry the white boxes because it seems like everybody prefers buying the black boxes. Um, mainly I think because of CVI. So , um, so whether it is the, you know, anticipation of a routine coming in and then getting the object for the routine, and then you perform the routine. So it's important that those individual routines are performed , uh, the same way every time until the learner is ready to advance onto another level, and then you would introduce another step. Okay. So , um, that's just a great way to start. Um, sensing and learning. We still sell items that were available in the original sensory learning kit. So you can still get your switches, you can still get your environmental control unit. We still have the vibrating pad. We have these switch adapted fans. Um, I believe we still sell the , uh, mirror. So there are very many, many of the items that were in the original SLK you can still purchase individually, but we mainly focus now on the methodology because you can create a routine. You don't need the vibrating pad to create the routine. Um, if your learner is very attracted to that vibrating pad, certainly I recommend you get it. But , um, you can create a routine out of anything within the child's environment. And like I said, it, if it is something that learner likes and has interest in, they will be more encouraged to participate in that routine. Okay, so next up, once that learner has , um, moved through sensing and learning at that sensory motor stage, you can then move into Sam symbols and meaning, which is really targeting that early pre-operational level of learning using SAM learners gain information through games. So with level one , uh, we use the learner's own body for body part words, body positioning, left, right front back, and finger name words. Level two is people, objects and actions touching the body by u using people and object words, action words and words for similar objects or associated objects and , um, symbols to label people as well, I think . Yeah. So next step would be level three. And it uses people, objects, actions, and places beyond the body. Now these games use like sound bridging to understand sequences and using sound to understand actions performed by other people beyond the body. So , um, from, from the shopping page, one can access both , uh, the SAM assessment forms and you can also access videos , uh, showing some SAM games being played. Okay. And again, those are just trying to give you some ideas on how you can do it. You know, each learner, just because how we show it in the video , someone playing slap , um, you may not have to be exactly like that, okay? 'cause remember, your your learner is unique and, and what they, they can do right now and with what you're wanting to teach them. So, and if, if it's CVI, of course, whether you're using Sensing and Learning or SAM's Symbols and Meaning Kit, keep in mind those, those strategies of, you know, starting simple gradually bu building complexity within the routine or whatever. If you, if you're using objects, let's just say like we have videos online for our sensing and learning videos. So say if you have a child who is doing a hair routine, like one of our children is there, make sure that the objects that the the child is using are , um, very simple, maybe only one color. You know, if , uh, gradually you might be able to use items that are two colors, but just using those CVI strategies that most of you, I'm sure already know , um, just use those within your sensing and learning routines. Use them within your SAM , um, games as well. So, and then, like I said , um, you would then move on to using tactile connections, symbols for communication, or you could make the choice possibly to also use stacks , which is , uh, standardized, tactile augmentative , uh, communication symbols. The difference there is stacks is pre-made, and so , um, it is more standardized, whereas tactile connections, you have the option of creating a standardized system within your school, your school district or whatever. Um, but you also have the ability to create those individualized systems that are very important. And particularly if you've got a child with CVI , um, you may need to make sure that your symbols are only one color on that background. With tactile connections, you have a variety of colors for backgrounds with , uh, stacks. The stack set that APH cells only comes in a white background, but you can contact ADA who manufactures them for us, and their contact information is on the back of a Stacks card. And ADA , um, does create some black , uh, stacks cards. Um, if you do think that your student needs those, A PH does not sell the black cards, but they are available from ADA directly if you would like to check those out. So the last thing I want to tell you about is , uh, the Astro Adventure Ball app. Um, many of you, I don't know how long you have been using APH products, but a good number of years ago, in the early two thousands, we sold a ball called the Revolution Sport Ball. It was made by caico . It was a great ball for toddlers. It , uh, was a hard plastic ball with a BB on the inside, and so it would make noise when moved and it had a foam exoskeleton on the outside. So children toddlers with , um, limited mobility skills could still grasp it, hold it, those kids with cerebral palsy could play with it. Um , it was very lightweight and we , we sold that for several years until Caico uh , discontinued it. In the meantime, we went ahead and created the , um, we're calling it the Astro Adventure Ball, and we have created an Astro Adventure Ball app. So , um, this app, it introduces visual complexity, and at level three, it combines visual recognition with music to , so to see if the, the learner can then process both , um, the, the visual and audio at the same time. So the three balls in the app ha are their characters and their names are whirl, swirl, and twirl. And , uh, each, they, they are using three colors, yellow, red, and black. And with , uh, the toy chest scenario , uh, whirl is , um, just one color. He starts off just being one color. It's a one color ball. So the plastic, the plastic interior ball and the exoskeleton are both the same color . And after you identify , um, the ball in the toy chest each time with an additional object being dropped into the toy chest, once you do all of that correctly, then you go to level two in the toy chest and all of a sudden the ball is two colors. Okay? The, the plastic ball is, is one color and the exoskeleton is a second color. And then as the objects all drop into the toy test , they are also all two colors. And then when you surpass all of that, you then have a three color ball. And all the objects in the toy test are three colors. And once you've completed that task, you can then advance on to the ballpark. And our next character is the ball in a baseball field. So again, you're gonna start off with a one color ball, and all the objects on the ball field are one color, and then you go into two color and then to three color, and at three color . Um, you also get that music to play. And what I like so much about the ballpark is that we actually have the organ music from the ballpark play and take me out to the ballgame. So that's a lot of fun. And then finally, after you've done levels one, two, and three at the ballpark , that some character who just like hits the ball and it goes out into outer space. So now we're out floating around amongst the stars and we have a one color ball, then we advance to the two color ball, and eventually we have that three color ball floating around with all those three color planets and rocket ships and everything. And of course, we have some pretty eerie sounding space music to go along with level three. So , um, I , uh, I hope one day , um, you will check out the Astro Adventure Ball app. Um, it's, it's really fun. I think kids really like it. And hopefully one day we will have a ball to go with that app. One more time,

Sara Brown:

Are there any other products or things you'd like to share about APH CVI products or anything that you'd like to share with us?

Tristan Pierce:

Well, you know, it, it comes down to that , um, APH does have some products that have CVI in the name like CVI complexity sequences or something like that. Really, you know, APH tries their best to design products that they feel benefit all. I mean, we, we use the phrase, "welcome everyone," right? <laugh> . So , um, like I said, whether you're using Symbols and Meaning Tactile Connections, any of those, you can create the routines in a way that is, is more friendly to a learner with CBI, you know, just by reducing single objects with, with simpler color only one than introducing to , uh, trying to keep things very quiet so the , the learner can really focus on their eyes and not be disturbed by trying to process hearing at the same time. You know? So just about any APH products can be used for a learner with CVI. Um, it's just using those CVI strategies, you know, those CVI strategies. APH has had a lot of information out about that. Uh, pastoral literacy talks about it. Uh, Perkins has had videos on it. I mean, it's everywhere. Okay. So , um, just using those CVI strategies, I'm <affirmative> , I am inclined to say you can use just about every early childhood product we have and then some even, you know, so,

Sara Brown:

Alright . Well, Tristan, thank you so very much for taking time out of your day to come on Change Makers and talk to me.

Tristan Pierce:

Oh , I'm very welcome to do it. Okay, thank you again.

Sara Brown:

I've put links in the show notes to all of those products. Tristan mentioned. Do you have any follow up questions to what you just heard on this podcast? Or do you have a podcast topic? Send an email to changemakers@aph.org. Thank you so much for listening to this episode of Change Makers and as always, be sure to look for ways you can be a changemaker this week.