Babies with CVI

In this episode of Change Makers, we're learning about resources for CVI. There is a new APH Press book titled, Babies with CVI: Nurturing Visual Abilities and Development in Early Childhood. Hear from the author, Anne McComiskey, what other books are available from APH Press that discuss CVI and the author of The CVI Companion Guide, Amanda Lueck. We'll also have a segment from Partners with Paul.

Podcast Participants (In Order of Appearance)

• Sara Brown: APH Public Relations Manager
• Anne McComiskey: Babies with CVI: Nurturing Visual Abilities and Development in Early Childhood
• Heather Spence: APH Press Director
• Paul Ferrara: Partners with Paul Host
• Dan Gardner: PixBlaster
• Amanda Lueck: CVI Companion Guide

Additional Links

• Family Connect: Family-oriented site from American Printing House for the Blind.
• APH Homepage: American Printing House for the Blind.
• LilliWorks Active Learning Foundation:  Information and teaching theory of Active Learning by Lilli Nielsen.
• WonderBaby.org: Site funded by Perkins School for the Blind.
• Paths to Literacy: Collaborative site between Perkins School for the Blind and Texas School for the Blind and Visually Impaired that shares strategies, resources, and research for technology to enhance literacy for children.
• Texas School for the Blind and Visually Impaired: Information, ideas, articles, and suggestions.
• Little Bear Sees - Helping Children with Cortical Visual Impairment:  Website by parents offering support.
• Blind Babies Foundation:  Informative and easily readable facts.
• CVI - American Printing House for the Blind: Resource for research and support for parents and teachers.
• CViConnect: Community of professionals offering hope with personalized support. 
• Cortical Visual Impairment: An Approach to Assessment and Intervention, 2nd Edition
• Cortical Visual Impairment: Advanced Principles
• Vision and the Brain: Understanding Cerebral Visual Impairment in Children
• APH Products for CVI
• PixBlaster Search Results
• PixBlaster Embosser YouTube Training Videos
• PixBlaster User Guide
• PixBlaster FAQs

Customer Service
Toll-Free: 800-223-1839 (U.S. and Canada)
Fax: 502-899-2284
Email: cs@aph.org
Hours: Monday–Friday 8:00 a.m. – 8:00 p. m. EST

Transcript

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Speaker 1 0:01

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 visually impaired. Here's your host.

Sara 0:16

Hello, and welcome to Change Makers. I'm APH is Public Relations Manager, Sara Brown and today we are learning about a new APH Press book, title , the Babies with CVI: Nurturing Visual Abilities and Development in Early Childhood. We'll hear from the author Anne McComiskey other books from APH that discuss CVI and the author of the CVI Companion Guide, Amanda Lueck. After that, we'll check in with Partners with Paul. Now let's talk to Babies with CVI author Anne McComiskey. Hello, Anne . And welcome to Change Makers.

Anne 0:48

Hi Sara. Thank you for inviting me. I'm very excited for this opportunity to talk about Babies with CVI. Great.

Sara 0:56

Now tell me this. What makes this book appropriate for use with babies up to 36 months old?

Anne 1:04

Well, that's a loaded question and I let's talk about instead of appropriate. Let's talk about very, very, very important for working with babies. That the issue with CVI is that it's a brain-related visual impairment. And what's wonderful about us as human beings is that we have brain plasticity and it is particularly wonderful for babies. So if a baby has a brain issue, there are things that can be done to help mend some of the areas or bypass them so that a baby was CVI can actually start to develop. Many times can start to develop vision. So the plasticity of the baby is what makes this really important because it's all related in the brain. But , um, the window we have plasticity through our elder years, I'm here to tell you about elder years. Okay . Um, but it's so essential and it's so hot when they're little in those first few years of life. So there are issues, and I think we'll probably get into them with some of your other questions, but they're there issues for parents where they have so much going on with a baby with difficulties, and they may not know about this really important time that could generate some visual use, if not a little, a lot.

Sara 2:46

Okay. Now, how does this book help parents?

Anne 2:51

Well, I hope it helps them a lot. Um, over my 50, some of working with parents when I realized is for several reasons, they don't really understand what's going on. One of them is their grieving process and the book talks about that a lot. So parents may not understand what is being said, not because they're not smart, but just because they're grieving processes, protecting them from too much trauma. Um, there are, the book is written so that I could understand it, which means it's in very clear, no doublespeak , um, and the wonderful editors. And I worked hard to make it so that it was very, almost palatable, not just for parents, but for new teachers into the field where CVI is kind of still a stranger, this whole diagnosis.

Sara 3:58

How is CVI diagnosed in babies and around what age is it typically diagnosed?

Anne 4:05

Well, it isn't typically diagnosed because it's, it's a hider . So according to Christine Roman-Lantzy, and many of us, there are probably three really , um, reliable ways to get near it. Um, one is a visual eye exam, but because kids with CVI frequently don't have any ocular eye difficulties that may not tell you anything. So then you want to have some kind of a medical exam that's going to , um, get in and see what the brain is telling you, but with new babies and that may not be it. So what teachers of the visually impaired are relying on in addition to the other pieces of information are characteristic behaviors that tell you the brain is not getting that visual information. It's not digesting it and sorting it and then reacting to it. And that tells you that it's brain centered, not eyes centered. The other thing is the history of the baby. So depending on what the birth was like, what the pre-birth was like any traumas, afterbirth , things that could typically affect the brain. Um, those are a tip-off if vision isn't looking just right, that there's a CVI issue involved.

Sara 5:42

Okay. Now this book Babies with CVI, it introduces the Early Visual Development Guide. Can you tell us more about that?

Anne 5:50

I can. I can. And it's , um, specific to these little, little babies , um , not necessarily to older kids, which is another reason why we want to get parents and teachers reacting to the CVI early on, instead of saying, well , we can, we can wait for a few years and that , um, the visual development guide looks at it , three areas of visual development that really need to get Hotwired somehow in order for the child to then go ahead with vision in more integrated and complex ways. So there's a checklist which once upon a time, when the book started was a chart , um, and it starts out with just visual alerting because one of the characteristics that parents may notice is my baby doesn't seem to look at me or my baby doesn't respond to me. So there are some very specific things parents and teachers can do and not just teachers, but um, other people, other professionals are working with them maybe can do to start the baby to have some visual stimulation. And hopefully what's going on inside that sweet little brain is what is that? What , what just happened there? Um, years and years and years ago, literally we used a flashlight and introduced it to the child. Now, these early years, when I was , I worked with kids that did have brain-related visual difficulty , um, that was what we did. And nobody knew what they were doing. This was back in the late sixties. And we were just going by the seat of our pants. But what we're finding is by introducing a direct light filtered, most of the time that could get into the brain. And pretty soon the kids were annoyed or confused and then interested. So the visual development guide starts from just alerting that vision. And there are several steps to do with the alerting their actual activities to do for , um, and then it goes to visual engagement. So you're not just saying, Hmm, what is that? But you're saying, Oh, what can I do with this? I couldn't look at my mommy and now when I look at her, she just radiates. So the second step in this visual development guide is visual engagement. And then what happened as we all know with our own development, like when you're first starting to learn to play tennis, you may be able to, you hit the ball, but can you hit the ball and move sideways at the same time? Well , that comes a little later. So with all of development, but in visual development, the third part is the visual integration so that I can crawl and use my vision to avoid that table. So the Visual Development Guide is really , um, a recipe to help parents Hotwire this vision. And that's it. What else ,

Sara 9:19

Other, what tips does this book have for parents that you would suggest or like to share with us ?

Anne 9:26

Um, well, it has lots, but it has tips for teachers who are supporting and advocating for the parents. And it has tips for the parents. So that , um, to me, one of the most important things for all of us to understand is what happens to these parents when they get slammed with this news, that there is something really different going on with their baby. So there's a whole section about grieving and what we can do about it. So a parent might think , um, I'm losing my brain, or I knew that I had an illness of depression and my reading this, they can think, Oh, wait a minute. I'm normal. I am having a normal reaction. I am a good parent. I'm just having a reaction to grief the teachers at the same time. Instead of saying, Mrs. Jones is stuck in grieving, can understand grieving a little bit better, that it is a process. And, you know , you can have trouble with it, for sure. We can have trouble with everything, but the parents take their time and parents and the supporters of those parents, whether it be the teachers or the grandparents or other professionals can support them in their grieving instead of trying to push them through it. So those tips to me are very important. And then parents wonder, well, what do I do to get some of these things happening? So there's a whole list of different activities that are just kind of step-by-step activities, because being overwhelmed can be the definition for these parents. They have grief going on. They have a new baby most importantly, and it may be their first baby. So they're still figuring out how to put that diaper on. Then they've got their family members who are also grieving on different levels and trying to help. Then they've got the doctors, then they've got the other professionals, they have total. And the other children that have very special needs for dealing with this. I don't mean disabilities necessarily. So parents are overwhelmed. And in my experience, what they love is having somebody come in and say, there's a lot going on here. Let's organize it. There's a lot that we want to do to teach this baby, to hold her head up. How can we do that? Instead of parents feeling like they've got to create the whole universe. So I think the step by step activities, suggestions and guidance is really has proved to be really wonderful for parents.

Sara 12:30

Okay. And how does this book help prepare the parents or the professionals as the babies get older?

Anne 12:39

Well, I , I think that's such an interesting question because of course that's exactly what we're doing with all of our children, whether they have something unique going on or whether they don't is we're trying to give them a foundation, a basis to build more complex, more exciting, broader pieces of development and information. So by giving them this foundation, that'll support their vision and then use that vision to support their early development. That's going to help them as they get older. I have worked with older children now for me, older would be six. Um , and you have to back up a little bit, but because the brain is so magic, it has already done some of this work, but it may have been kind of haphazard. And so you have to go figure out where the gaps are and try and work with those. Um, but basically what we're doing is we're helping teachers understand how to build that foundation and the well, the importance of the foundation, because a lot of the teachers haven't worked with babies. They may have babies, but babies without difficulties just do it naturally. They, they grow, they develop. So they may not really understand how they can best help someone from newborn up to three.

Sara 14:32

And one final question for you. Is there anything else you want listeners to know about this book?

Anne 14:40

I had a ball writing it. It was also a root canal several times over, but , um, I want to say the editors are they walk on water? I think they're fabulous, but for professionals and for parents, my wish, my intention was that this would be something that would be a welcome guide would take some of the anchor just from the new teachers or newer teachers or teachers and professionals unfamiliar with CVI and would be a boon to parents. So they would feel understood. Um, when they come out, for example, of a early appointment with their doctor who has said your child has CVI, whether they said Cerebral Visual Impairment or Cortical Visual Impairment, or Neurological Visual Impairment, lots of words to define what's going on with vision that's affected from the brain. So what the Dr. May say is, well , your baby has CVI and they'll use one of those other words probably. And he's , he's going to be blind. Now, if you're not familiar, what blindness means in its broad scope, your child has darkness as an experience. Well, that's not the case at all. So if you get a chance to read like the Girl Scout Handbook, which is what I kind of hope this is going to be for the Boy Scout Handbook , um, you know, that when your doctor tells you your child is going to be blind, what he means is , or she means is that they're going to have some difficult vision, but they're going to have vision. And then what we're saying is not only are they going to have vision, but we can cultivate it and help them. So they might have a lot of vision. I'm old enough in the field that some of my kids already graduated college. So there's so much, there's so much hope for these babies because the brain is so magnificent.

Sara 17:05

It really is. It it truly is. All right . And thank you so much for joining us today on change makers.

Anne 17:12

It was my pleasure, Sara, thank you so much for your time and your sweet questions. They were right on the money.

Sara 17:19

Great, great. And always a pleasure. You are welcome anytime to come back and up next, we're learning other books that also have a CVI focus. As we continue our conversation about CVI , it's important to know what other books are available for parents and educators and professionals. We have APH press director, Heather Spence. Hello, Heather. And thank you so much for joining us today on Change Makers.

Heather 17:47

Hi Sara. Thanks for having me.

Sara 17:49

What other APH books are out there for babies diagnosed with CVI?

Heather 17:55

Well, that's, what's so unique about this book. It really is the first one we have that focuses solely on babies. Um, it provides an in-depth look at approaches for working with children from birth to 36 months. Um, while we do have several other books related to children with CVI, this is really the first one to focus primarily on babies. It is so important to start interventions early. So I think this book is going to be a great resource for teachers and for parents as well , um, in providing some approaches and some activities that they can do with babies. Um, why they're so young to start building their visual skills.

Sara 18:43

Okay. And what are some APH books that are good for parents of children with CVI?

Heather 18:50

Well, we have two books by Dr. Christine Roman-Lantzy. Um, the first one is the second edition of her book , um, Cortical Visual Impairment and Approach to Assessment and Intervention. And that one really , uh , provides an understanding of the condition. And I guess you would call it a framework , um, for assessment and intervention. And then we have a companion guide that goes along with that one, and it is Cortical Visual Impairment, Advanced Principles. And in that book , um, Dr. Roman-Lantzy really dives deeper into some of the topics that are discussed in the first book. And she really , um, looks at the whole day of a student with CVI and so addresses some of the tasks that they have to perform and some of the interactions that they might have throughout the day that can be adapted to help them build their visual skills. Um, and then in addition to that , um , we also have Vision in the Brain Understanding Cerebral Visual Impairment in children , uh, by Amanda Hall, Lueck and Gordon Denton . And that book , um, really provides information on current research and the thinking on CVI with perspectives on what's happening in the field internationally. Um, there are several authors involved in that book from several different countries. So it also provides readers with approaches to assessment and intervention as well.

Sara 20:29

And all these books you just mentioned, where can they be purchased?

Heather 20:34

All of our APH press books can be purchased through our store aph.org. Um, and you can search by the book title, or just search for CVI. And it's going to give you a whole list of all the books as well as multiple products that we have , um, such as the mini Lightbox overlays. We have a CVI book builder kit , um , which can all be found on the website at aph.org. You can also reach out to customer service at 1 800-223-1839. And we have customer service representatives that are available Monday through Friday from 8:00 AM to 8:00 PM Eastern standard time.

Sara 21:20

And we'll be sure to put all the links to the books and the products and the customer service department that Heather just mentioned in the show notes. Okay. How there , thank you so much for joining us today on Change Makers.

Heather 21:33

Thanks for having me, Sara, it's always a pleasure

Sara 21:36

Up next. We're going to check in with Partners with Paul. Thank you, Sara.

Paul 21:42

Welcome to this episode of Partners with Paul this time. I'm happy to bring on Dan Gardner from View Plus he's the CEO welcome. And Dan, thank you very much. So for the audience who might not know, can you tell us a little bit more about View Plus?

Dan 21:59

Sure. We are celebrating our 25th anniversary this year of building designing manufacturing, braille embossers. So we started really actually started back when I was in college in 1988, when my father , uh, professor John Gardner was a physics professor at Oregon state and he went blind suddenly. And one of the key doing science and was told he couldn't do it. So he doesn't like no right answer. So he created this , uh , concept of in Boston, tactile graphics and ended up forming a company and bringing a product to market. In 2020 in the summer, APH started selling the pics blaster for $39.95 on quota.

Paul 22:43

Can you tell us a little bit more about that embosser?

Dan 22:45

Yeah, the , the PixBlaster is really a culmination of many years of working with APH on a variety of different projects. And it really brings together our transition from a tactical graphics company into a braille and tactile graphics company. So with the pics blaster, you're getting our brand new power, not braille. So you'd get with , uh , so you get great book, quality rail along with hand catching, tactile graphics, all in one printer. So it does the standard wide format, real paper double-sided , you know , uh , braille as well as then you have the ability to do the tactile graphics portions. So with that, right, is you could use, you know , braille blaster Duxbury , uh, for the braille part, but then also with all of you, plus embossers we include our tiger software suite. So that includes a word and Excel braille translation plug-in as well as the tiger designer for a , like a windows paint for tactical graphics type program. So there's a lot of materials out there on the web , uh, in , on both the , uh , APH tactical graphics image library, as well as the view plus website where you can download examples and tweak them to your needs,

Paul 24:03

Hand catching graphics. I love that concept. Can you talk to us about connectivity of the printer?

Dan 24:08

Yeah. The conductivity of the Pixel Lasker . It includes the pixie. So that is a wifi device to lie to connect it up to your network , uh, and use it as a wifi printer as well as it will connect up to your mobile device. Uh, so your phone or your tablet and allows you to do then braille on the fly. So text a braille conversion on the fly, as well as print, even tactile graphics from your phone.

Paul 24:34

Great. And how can folks find resources on how to learn to use the PixBlaster?

Dan 24:39

Well, yeah, again, this was a great partnership with APH, as we put together some great training videos that you can get to from the aph.org website. So aph.org/product/ pixblaster, and that's PixBlaster. And you'll find a link on there to the training tutorial videos. Yeah. There's another really handy way to get to those resources on your picks blaster itself. Next to the tackle button, they'll feel a raised square, which has a QR code on it, which your phone will take you right to all of these technical resources.

Paul 25:14

Great. Thanks for joining us today, Dan. Great to be here in the show notes. We've also included the link to the research page for pics blaster, and don't forget that on April 9th, we're going to have an Access Academy webinar with Dan and APH William Freeman to talk about braille math and the PixBlaster. Now back to you, Sara.

Sara 25:37

Thank you, Paul. Now we're going to talk to an author who's APH Quota book CVI Companion Guide is another great resource for parents and professionals. We have Amanda Lueck . Hello, Amanda, and welcome to Change Makers.

Amanda 25:51

Thank you.

Sara 25:53

Who is the target audience for this book?

Amanda 25:58

Well, the book is designed for children who have Cerebral Visual Impairment, Cortical Visual, and it's for young children. So the target audience would of course include parents and also TV and , uh , professionals who deliver services to that population. And , um , this would be anybody who does social, emotional communication, cognitive fine, motor gross motor orientation, mobility, and functional vision. So it would have a wide audience. In addition to parents and teachers of the visually impaired, it would include early, early childhood teachers, early child , um , early childhood special education teachers, speech, language pathologist, OTs, PTs , um, ONM , um, all professionals who would work with those children and their siblings in their settings, researchers, psychologists, and probably medical personnel might be interested in some of the information in the book.

Sara 27:12

Okay. And can the information found in the book also be applied to children over three years of age?

Amanda 27:20

It can. Um, there is in the book, a CBI profile where we reviewed all the research to date from the writing of the book on the manifestations of CVI. And those manifestations would apply to people across the lifespan. So that portion of the book can be used across the lifespan. Um, there's an interview guide that is appropriate just for younger children, but people can look at the CBI manifestations across the lifespan . And then , um, the book , uh , looks at all of the research that was done , um, with children, with CVI, with children, with BI and , um, applies it to intervention strategies. So the intervention strategies that are discussed in the book are written for very young children, but if people use age appropriate tasks that are meaningful and functional for children, when , um, applied into their daily routines, if these children are over three, it could work for them, particularly for children who have additional challenges who are over three.

Sara 28:43

Okay. Now it's the book is titled CVI Companion Guide. Can you explain where that title came from?

Amanda 28:52

Well , um, I wrote this book with Dr. Debra Chan and Dr. Liz Hartman . And this book is an expansion of earlier work that we did for APH. We wrote one book called the developmental guidelines for infants, with visual impairments, a manual with, for early intervention with Dr. Linda Kelis . And that was published around 1997 and we revised it in 2008. And that looks at all the things that , um , can affect young children with visual impairments in those domains that I mentioned earlier, what we did was we expanded this and how to be , um, a companion to that early book. So the early book would still apply, but we added a lot more research and a lot more intervention strategies for children with CVI in this book. And that's why it's called a companion guide.

Sara 30:03

Wow . All right. Well that , well, that explains that , um, Amanda Lueck, is there anything else you'd like to add?

Amanda 30:10

Well, we are currently doing an efficacy study for the program with early intervention and preschool staff at the New Mexico School for the Blind. And this study will be to is to pinpoint and how best to learn about and use the materials in it because there's a lot of stuff to learn. We learned so much when we were researching the book and writing it, and we want to ensure that people can digest and integrate this information and use it for the children and families who are out there.

Sara 30:54

All right. Amanda Lueck, thank you so much for joining us today on Change Makers.

Amanda 30:59

You're most welcome. And thank you for interviewing me and your interest for your interest in this book.

Sara 31:05

Be sure to check the show notes for any additional links or information that's mentioned in this podcast. And that's it for today's episode of Change Makers. Be sure to look for ways you can be a change maker this week.