CVI is the most common cause of permanent visual impairment in children. After a diagnosis, parents and guardians look for answers and support.
In today’s episode of Change Makers, we’ll talk to Leanne Grillot, National Director of Outreach Services for APH, Rachel Bennett, CVI Content and Community Manager at Perkins School for the Blind and Diane Sheline Consultant for Students with CVI. Then we will hear from the ConnectCenter.
CVI is the most common cause of permanent visual impairment in children. After a diagnosis, parents and guardians look for answers and support.
In today’s episode of Change Makers, we’ll talk to Leanne Grillot, National Director of Outreach Services for APH, Rachel Bennett, CVI Content and Community Manager at Perkins School for the Blind and Diane Sheline Consultant for Students with CVI. Then we will hear from the ConnectCenter.
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:Welcome back to the makers. My name is Sarah and today we're talking about CVI, also known as cortical visual impairment and the latest news and information CVI is the most common cause of permanent visual impairment in children. And after a diagnosis, many questions include how did it happen? Where do I go for help and support what devices and instruments can help when it comes to learning? Well today we have three exciting guests, national director of outreach services for APH, Leanne Grillot, CVI content, and community manager at Perkins school for the blind, Rachel Bennett, and consultant for students with CVI, Diane, Sheline. First, we'll talk to Leanne Grillot to explain CVI and answer some common questions she receives. Then Leanne will talk to Rachel Bennett and Diane Sheline about the latest sources of support and potential products that assist those with CVI. After that, we'll hear from the ConnectCenter. As usual, we'll include links in the show notes. Leanne, thanks so much for being on Change Makers. Let's give our listeners some background information about CVI. What is CVI?
Leanne:Well when a person has a cortical visual impairment CVI, the part of the brain that interprets signals from the eye doesn't function correctly, the brain is inconsistent with understanding and interpreting information CVI often co-exists with ocular visual loss. So their eyeball might or might not be functioning correctly.
Sara:How is it diagnosed?
Leanne:Is typically diagnosed by a medical doctor, ophthalmologists and neurologists are the most qualified medical specialists to make this diagnosis, but you might also be in a state where an optometrist is allowed to make the diagnosis of CVI.
Sara:How does it occur?
Leanne:Well, the major causes of CVI are asphyxia, prenatal hypoxia, ischemia, or a lack of sufficient oxygen in the body cells or blood. So not enough blood supply got to the brain, also developmental brain defects, head injury, hydrocephalus, and also infections of the central nervous system, such as meningitis or encephalitis.
Sara:Is it a complete loss of vision?
Leanne:Well, the degree of visual impairment can range from severe visual impairment to total blindness. There are some common characteristics about visual function for these children, but the vision always seems to appear to be variable both minute by minute and even day by day. Many students with CVI use their peripheral vision more efficiently and effectively than their central vision. And another common comparison is that we often, they have Swiss cheese effect to the vision there's blotchiness with what they see,
Sara:What research has been done?
Leanne:Because cortical visual impairment is the most common cause of vision loss and children in developed countries, there continues to be an increase in research. This also means that there is current research being shared all the time. So currently you might go and, and check the sites for current research and you would find topics such as the benefits of decreasing visual clutter or using an iPad for communication. It could also be about remote instruction for students with visual impairments or the impact CVI has on their motor development. And also you might see long- term outcomes for students with CVI.
Sara:Is there anything else you want to share with us about CVI?
Leanne:Visual impairment has been around a long time. So just the name or the title or the identification. It seems to have become more fresh within the last 20 years, but students with CVI have really been with us. And there are many new things about this development. That means you really do have to stay on top of the research and really start talking to those people who work with students with CVI to have a better understanding of what's available for those students.
Sara:All right. Thank you so much, Leanne. Now Leanne is going to chat with Rachel Bennett from the Perkins school for the blind Perkins is the oldest school for the blind in the United States. And it's also where Anne Sullivan honed her skills. Take it away. Leanne,
Leanne:Thank you Rachel for joining us, I would like if you could take some time to tell us just a little bit about yourself and how you became familiar with CVI and with Perkins.
Rachel:Absolutely. It's so wonderful to be here. Thank you so much for having me. Um, I really appreciate what APH has done for the blind and visually impaired community for so long. Um, you know, my son has so many products from APH right now that he's using the big board and this lamp board, you know, all the goodies for children with CVI. So thank you. Thank you. I have to start there. Um, Oh, how did I get to where I am? You know, it all starts with my son, Henry. He is eight years old. He has critical cerebral visual impairment as well as other ocular conditions, including pretty severe nystagmus and myopia and um, optic nerve atrophy. So he has a really complex, uh, complex visual impairment profile. Um, and you know, when he was born, he was my first. So, you know, I didn't realize that shaking the eyes wasn't normal at three or four months. And so that's what really started our journey of going to pediatric ophthalmologists and getting MRI and just the whole gamut and slew of specialists that you start seeing when you have a child that's not meeting milestones and you realize that you have a child with very special needs. Um, he was failure to thrive for most of his life until he was about three. Um, you know, he didn't talk until he was three and a half or so, or he didn't walk until he was over two. So, you know, a lot of those, um, delayed milestones and the whole, um, journey of trying to figure out what was going on with him. And he was a kind of a mystery to a lot of the medical professionals and educators, you know, I just thought he was this unicorn, you know, but we realize now he's not. Um, you know, so we saw pediatric ophthalmologists neurologists. We had three different visits to the national eye Institute at NH. Um, we, he had three different teachers of the visually impaired and teachers of the visually impaired and no one ever mentioned CVI, no one ever talked about it. Um, and I had so many questions about what I was seeing in a widened. He looked at me, why didn't you recognize me when I walked in the room? Why do you trip over everything on the floor? Why didn't he look when he was eating? Why did he only love this yellow bus? Why did he not want to read or look at books or look at the screen? Um, all of these things that I didn't have answers to, and it wasn't until, um, he was about four and a half or so that, uh, an IEP meeting, you know, um, a TVI who was just observing him for another reason. And our school districts said, you know, he has characteristics of CVI and I'm like, well, what's that? And they all looked at me like I was crazy. I'm like, I've never heard of it. Um, and so that's where this whole journey began. Perkins has always been a leader in CVI education. Um, and they're always my go-to when there's a new webinar, when they're highlighting a new, um, a specialist, an expert about CVI.
Leanne:I hear that Perkins has a new resource called CVI now. So what kind of, what can you tell me about it? What does it include? Who is it is designed for?
Rachel:It is a website that is geared towards CVI families. It is an inclusive, vetted current to website where you're going to find current information, current research, and you're going to really find as a parent, you know, the basics of what Siva is and how to get diagnosis and what to do after diagnosis. But you're also gonna find some really great articles about CVI and communication and CVI. And, you know, for example, a recent one, Steven Halloween, how does CGI affect kids access to Halloween? So it's going to be parent-friendly articles. It's also going to be some really in-depth understanding CVI articles. We just had a recent profile of Dr. Barry Cran, who works at the Perkins low vision clinic about how he evaluates canvas CVI. You know, we need the medical community to really step up, to start diagnosing. Cause that's a huge, huge barrier. You know, um, medical providers, ophthalmologists optometrists are really the gatekeepers for our kids because our kids can't get a diagnosis. They can't get access to services that they need. So we want to build that awareness and, you know, it's just getting started. I'm the content manager there. So I'm in charge of writing most of the articles and interviewing experts. I mean, it's like every CVI parent's dream. I get to talk about all of the leading experts in the field. I just pinch myself because it's very rare in the world that you can align such a personal passion, passion with a career. So I'm really excited about that
Leanne:There services and supports offered by CVI now beyond the website. Yes?
Rachel:Um, so along with the website, we have a CVI now parent Facebook group. Um, we have over 500 members already, which is really exciting. And they're parents from all over the world, their parents who are on all different levels of their CVI journey, some who just learned about CVI, some who are, you know, really big parent advocates about CVI and are having some really rich discussions. And so I'm the community manager for that as well. And you know, it's a place where we all, I mean, CBA parents, we all have burning questions all the time and we want to get the answers, but it's really important that we get really comprehensive and accurate answers as well. And so I'm just so happy that we can cultivate that with this Facebook group, because if I don't know the answer, I can go and ask the, ask the experts and report back, you know? And so you can really think about, um, the questions you want to ask the, hopefully get the answers you need. And then also just start having discussions about topics that we care about. What's been really exciting is that we've started to do, um, live virtual events through the Facebook group. So we have experts come on, zoom, and then you can do a live feed from zoom to Facebook. And so parents can listen to it, live and ask questions. In real time, we had one recently about CVI remote learning. Um, and then we also had one about CVN communication, specifically talking about augmentative and alternative communication and the comments and that for that, um, event was so great. I mean, parents were asking questions and then they're also answering each other's questions. And it's just a really nice, you know, um, really nice way for parents to get access and to have a real conversation with experts in the field. Um, and we want it to be informative yet relaxed so they can really dive into what they what's important to them and their child. And then we have a whole, um, plan for events coming up. So the parents, if you're listened to this, um, join the CVL parent Facebook group, and this, these events will always be recorded and posted on to the main website for CTA now.org. So you can share with, you know, your child's team and such, but, um, you know, if you're part of the Facebook group, you can just ask those questions in real time.
Leanne:So I have a question. Can anyone join the Facebook group if there's a teacher of the visually impaired listening or a student in a college program listening, how is that?
Rachel:It's just for parents right now. It's a parent only group, but again, those, um, those events are posted on the CDN now, um, webpage, so that you can watch the recording.
Leanne:The recording is open for parents and students in TBI programs. Yeah,
Rachel:Yeah. And you know, CVI now.org is a really responsive site. And so I want to make sure, you know, whatever topics that parents are really talking about, that we're going to put some content on the site about that. So it's really current, it's going to, it's really responsive. Um, and you know, I, I want to talk to as many people who are working with kids with CVI as they can just to get all the insights, all the perspectives, um, that wouldn't, we wouldn't necessarily hear about. So it's a really collective inclusive space, um, as a way to keep the conversation going to move the field forward. There's so much we need to do. And I mean, I have big plans for this site. I want it to be, we know, create CFA, not an org for CVA professionals, for medical professionals, you know, so there's a lot of big things come in. We're just getting started.
Leanne:So Rachel, is there anything else you'd like to add?
Rachel:Yeah. Thank you. And, um, I just really want to emphasize that every kid has CVI is unique. There are no one size fits all solutions or interventions, and you really see this as a thread on CVI now.org, that assessment is critical. You know, our children need a whole suite of assessments, vision-based assessments or functional divisional assessment. Um, they need CVI specific tools that include the CVI range, Dutton's inventory, um, ELs or tuberous, uh, CA screening. Um, there's Matt Tiejin's complexity framework and 2d image assessment. I mean, there are a lot of, um, diverse assessments out there for kids with CVI and they need to all be used for our kids. Um, and we need to understand that there are promising practices to work with our kids with CVI, but every single kid with Siva has their own unique vision, has their own unique profile. And what CBA now.org really helps the reader understand is how to use a whole child approach to really, truly meet the needs of our kids. You know, even if a kid, for example, might have the same, a CVI range score, their interventions are going to look very different depending on the unique needs, you know, w any other complexities, any anything. And so I think it's really important that we start cultivating this whole child approach to ensure that our kids with CVI can really thrive and fully access their work.
Leanne:Thank you so much, Rachel. That was great.
Rachel:Now, Leanne, will talk to Diane Sheline, consultant for students with CVS.
Leanne:Hello, Diane. Welcome. So glad to have you with us today.
Rachel:Well, I'm just absolutely thrilled to be here with you today, and I can't wait to dive into our topics that we're going to talk about.
Leanne:So tell me a little bit more about yourself and how you got involved in working with students with cortical visual impairment.
Rachel:Well, you know, I I've been in the field working with, as a teacher of students with visual impairments since 1979, 1980. I was, uh, I received my master's in special education, uh,
Sara:In the area of visual impairment in San Francisco, California under the guidance of Dr. Phil Hatland at that time, who many of us know and, and love dearly. Um, and, uh, uh, from then I, during that time, we didn't really, you know, separate out or do anything different with our kids that were cortically visually impaired. In fact, they weren't even called cortically visually impaired at that time. Anyway, um, I had a special interest in working with little ones and I'm sure I had quite a bit of time spent with kids that were cortically visually impaired. And in those early days, looking back on it, I probably didn't do a, a really terrific job knowing what I know now. Um, but anyway, how did I get to it? Uh, after years and years of teaching in the field, um, we went overseas, uh, first to Dubai, um, with my husband's, um, uh, uh, work. And then we were in Saudi Arabia and soon after, um, uh, about 2001 soon after 9/11, in fact, we were transferred back and in 2002, we came back to the United States and I picked up where I left off in the area of teaching, uh, visually impaired children, uh, much to my surprise, finding my caseload quite weighted down with children, with diagnosis of cortical visual impairment. So I jumped into action learned as much as I could back in those early days, 2003, 2004, took as many courses as I could through dr. Roman, um, and, uh, really, uh, worked on a lot of figuring out what worked, what strategies and techniques and materials worked with this population of students and, uh, uh, developed a website to share. Some of my strategies started doing a lot of training of, uh, parents and teachers and, um, uh, and then, uh, uh, not only, you know, built up my website, but wrote a book mostly on strategies. And then, um, now just recently started a YouTube channel, uh, that can be found@youtube.com backslash strategy to see, and, um, put a lot of my strategies in there, but I do use a lot of APH materials. So, um, oftentimes I'm going through them and talking about them, uh, quite, um, uh, enthusiastically and people think I'm a sales person for APH, but I love their materials. So, um, that's kinda how I got started really in the early two thousands.
Leanne:Well, let's dig into that. So you, you have some APH products that you use with students with CVI. Tell me more about those.
Sara:Yeah. I, you know, I have a lot of that I use, but I guess I should focus on the ones that I feel are a must have, um, for, uh, teachers, for parents, for anyone working with kids with cortical visual impairment. And the first one that I would say that is an absolute must. And I mean, I carry two or three of these anywhere I go, it's an invisible word, an APH invisible word. And, um, that is because our students, particularly when they're visually functioning in phase, one of the CVI range really need a strictly controlled environment. And what the invisible art is, is it's a force four panel board that, uh, in fact, let me tell, say the dimensions, because I think that'll help our listeners, um, understand the size of it. It's 48 inches by 30 inches in size, and it's a double sided. Uh, well, it's, uh, uh, a quad four sided board that folds up and you can carry it in a caring sack and it's black hook and loop compatible fabric on one side. And so it just creates a very non-complex background. Difficulty with complexity is very, um, a very real thing with our students with cortical visual impairment, not only in phase one, but in phase two and in phase three. So you really end up using the invisible word. Um, uh, very, very often, uh, no matter whether they're in phase one, phase two or phase three, but especially when they're in phase one, because you want to block out all of that competing visual input that is in our environment all around us. We want to be able to block that out so that the target you show them really stands out and really pops. And, and especially in phase one, it should be a single colored target. I would recommend that it be carried, uh, in any, um, evaluation purposes, whether it kids are, um, uh, functioning at the phase one, uh, and of the CVI range, or even up into the phase three. And because when you present a very, um, challenging or complex materials or doing a very complex motor task, our kids oftentimes need a less, um, busy environment and putting up an APH invisible word really helps the all in one board. I always have the all-in-one board with me, and that comes in two sizes, a personal size that will fit on a desk or on the tray of a wheelchair tray or a larger size, which is the original size. I have both sizes. I use both, um, uh, you know, equally often with our little ones. I often use the, um, smaller, uh, student personal sized one, but that invisible board hat, or excuse me, the all in one board has a black hook and loop compatible side, and then it can be flipped and you've got a white, dry erase board size. That's also magnetic. So it has a variety of uses. I pretty much, um, use a very, very frequently the hook and loop compatible size side. And again, that invisible, it has a hook and loop side as well. And then the third thing that is in this area where it really blocks off competing of visual input, um, and that complexity of the visual environment is the tri-fold board. And that's also available through APH.
Leanne:Yeah, I know that you've done quite a bit of work, also assisting people understanding how the mini light box and now the new led mini light boxes helpful and how it might be used with students that have to go in certain positions. Can you talk about that?
Sara:Yes. I I'd be happy to talk about that because again, the light box is another one of my favorites, oftentimes, um, teachers and maybe even parents feel that the light box is something that is only used with kids in phase one. Uh, well, I have to tell you, I use it in through phase two and up through phase three as well, to help with certain, um, or maybe orientation and mobility. I will use it as the background to, uh, my symbols that I'm using for an orientation and mobility lesson say. Um, so it's not just, uh, a, a tool that is used with kids in phase one. Uh, you know, I sort of, um, compare it to the use of, um, an iPad, which, uh, is wonderful for kids in phase one, but can be used for kids in phase two. And for phase three, the light box I feel, uh, is one of those tools that can be used all through, um, uh, with any student, no matter what their level, just to help bring attention to the target and make it really stand out. And there's lots of ways to do that with the light box. Uh, and, you know, I'm most familiar obviously with the, uh, standard yellow light box, the big one, and with the mini light box that kind of come in a gray bluish color, but now, uh, we have the new led mini light box that's out that, um, uh, unfortunately I don't have yet, but it, I have been, you know, privileged to be able to work with it and play with it at a couple of seminars and, and, uh, workshops that I've been at, uh, APH has let me play with it and use it and try it out. And I absolutely love it. It's just really, really fantastic. I think that it a lot of really great features. Um, now with it in particular, I have to bring up, um, that it can be used with a, uh, different mounts. The Mount mover has a quick release plate. It can be used with, or a clamp on Mount Mount. And, um, APH gives several, um, directions and instruction how to use these different, um, uh, um, mounts that you can use with the tray. So it can be positioned in the student's best field of view. And, you know, considering the student's best field of view is one of the 10 visual and behavioral characteristics of the CVI range. And just as I was talking about, reducing complexity is huge with kids all the way through the CVI range and, and use of the invisible board is really helpful for doing that. The use of the light box hits several areas of its visual and behavioral characteristics, particularly that need for light and, um, visual field preferences, because now it can really be positioned well using these different mounts, and we can put it in the student's best field of view. Um, the other thing that I just love about the new, um, uh, led light box, and I think that this also can be used on the old ones, if you do have the old ones, is that it now has this magic ledge. That can be that's clear see-through that can be, um, uh, stuck in the little Ridge. And I'm probably not using the right technical terms that APH would like, but it's this little catchy Ridge that's in the, um, built on the light box and you can put this ledge on it that will hold materials like the light box materials, the cubes, the shapes. Now you can put it up at an angle for our students and in conjunction with that clear see-through ledge, you can now put materials on it and they will stay put not only that, but wait, there's more, they have a, uh, a translucent piece of Dyson. And if you're familiar with, um, work that OTs and sometimes PTs use, they will take Dyson to help hold a plate or a cup in place on a tray. Well, um, now we've got this translucent, uh, see a light comes through a piece of Dyson, um, that you can stick on the light box and, um, uh, it, it will hold things in place like the mini light box or the, excuse me, the light box materials, the shapes, the triangular shapes the circles.
Leanne:So what are some other devices that you've used from APH with students with CVI?
Sara:Well, I'll tell you what I am taking a, uh, um, a literacy class right now through Perkins. Um, and, uh, it's absolutely fantastic. Judy Endicott is the instructor, and I've been getting so many ideas and getting so excited. And I know that this has been out for a while, but I really, really love the CVI book builder kit. And I'll tell you the reason why, um, the book builder kit, um, when you order it as a kit, and I would recommend that you do that. You can order the individual bits and pieces as refills, but if you're not familiar with making books for kids with cortical visual impairment, I would order the kit to begin with. Uh, and the reason why is it become, it comes with loads of ideas of how to make books in addition to different GEs that can be used, and all of them are black. And, uh, again, that pulls in that need for reducing complexity and difficulty with complexity that our student has an, um, by using a black page as a background that really reduces complexity and makes your target pop, whatever you put on that page. So they give you different types of ways that, um, pages can be paid to be just made in black paper, um, or black card stock. Um, it comes with, um, fabric pages that are that hook and loop compatible material. And, um, I'll talk a little bit more about that one in a second. It also comes with ages that are black magnetic pages. So they're, uh, you know, you could, you could use them with magnetic different things. It also comes with, um, uh, 16 black kind of a poly blend page. You can try that out and, and then it comes with some page protectors and some, um, binders that you combine the men and ties that you can, uh, uh, make a binder with and then all of these different, um, uh, suggestions and ways that you can use them, uh, with that guidebook. So, um, I think that it's important to try out a variety of different types of pages and really take a look at that guidebook to get some ideas. Um, but then, um, you know, what, what are some other ways that you can put in? You're probably thinking right now, well, why would you need magnetic pages and, you know, hook and loop well, um, how I do it and, and the ones that I like the most are the, um, uh, hook and loop compatible pages. Uh, and I have probably the last available in the United States. I have something called, um, Velcro brand picture paper, and it used to be available. And I'm sorry, folks. I have bought it all up, whatever was out there on eBay. I'm always checking to see if it's out there and I buy it. So, um, I run the Velcro paper through my, uh, printer, my color printer, and I print off pictures for that hook and loop. Of course you can use also just the standard hook and loop, uh, little squares that, um, oftentimes you get with a lot of APH materials and you can put that on the back of pictures as well, and put them in the book, then you're probably thinking, well, what about those magnetic pages? Well, you can also order, uh, ink jet printable sheets that will go through the, um, the, uh, uh, your printer as well. Uh, an inkjet printer and print off those crisp, clear, uh, color images of those that student's favorite, familiar, realistic items is what you would start with and do keep in mind what types of pictures you print off and what Le where your student is visually functioning on that CVI range, because you do in the very beginning need to keep it very simple. And our kids oftentimes don't recognize images until they're well into phase two. So do I have a good understanding of that? You can attach your magnetic little pieces to the back of objects as well. Um, uh, or the, um, uh, Velcro hook and loop, um, types of pieces to the back of objects and put it in those pack paces pages.
Leanne:Well, I definitely have to say, thank you, Diane. You've given us lots of ideas of different products we could use. And in some ways, maybe ways we didn't think about using them.
Sara:Yeah, sure. Got to think outside of the box.
Leanne:Definitely do. Definitely do.
Sara:Now, we'll hear from Olaya Landa-Vialard with APH's ConnectCenter. The ConnectCenter incorporates FamilyConnect.org, CareerConnect, VisionAware.org and BrailleBump.org. These services are geared for all walks of life, Olaya. What's new?
Olaya:Um, my name's Aliah land of the Lord, and I'm the director of the APH connects center. I'm very, very happy to be part of this podcast today, just to give you some exciting information as to what is going on at the, um, at our connect center, we're really, really busy, and we're really excited to be able to say that we're really, really busy. Um, what helps keeps us keep us really busy is partnering with the field and different organizations and entities that are out there who want to help us provide more services to the field and to our children and to our family members who are blind or low vision, or have a visual impairment. And so we have exciting things that we're doing with community partners. Um, for as an example, we have developed some webinars with our AER, um, local chapters or state chapters. Um, and so if you, part of a chapter in your state and you have something that you want to share, um, and want to make sure that that information goes beyond just your AER chapter in your state, please email or contact the connect center at, uh, connect center@aph.org with any ideas or, um, you know, for partnerships or any ideas for webinars. And then we'd be more than happy to work with you and try to get your information out there. Um, we also, uh, partnered with the Illinois school for the visually impaired and their early intervention outreach program. And with them, we're doing a series of webinars, um, dealing with early intervention, uh, visual impairment out, which is something that is really unique and that we don't have a lot of that type of information being, um, you know, shared right now in the field. There are some entities like TSBVI and Perkins. Uh, but we also are now trying to make sure that APH is providing information about that very important timeline in our kiddos lives when they are just starting to learn how to, you know, while they're during their development while they're an infant and their toddler. And so we really are excited about that webinar series that we actually started back in October. So we have, um, a webinar for that series once a month, every second Monday of the month is when we're what we're shooting for. And so to find out about the dates and the times of those webinars, you can always go to family connect.org and look up that information. Usually we have it in the swelling banner at the very top. So it's something you can get to right away and, uh, you know, sign up for those webinars. They are appropriate for families and for providers. So we really look forward to having you join us. And we also have a partnership with the national eye Institute for vision aware, and the website for vision aware is vision aware.org. And there you can find information about eye conditions. We are also, um, partnering with, uh, a nurse like nurse consultants to talk about diabetes since this month is diabetes awareness month. And so if you visit, if you visit vision aware, um, you can get more information about managing diabetes with a visual pyramid. Um, we also have a webinar that we are putting on for diabetes awareness month. Uh, that's going to be happening on November 30th from three to four, o'clock Eastern, and it's going to be about monitoring your blood sugar and insulin when you're visually impaired. So we have some blogs that are also going to be coming up, um, regarding diabetes and management, uh, while you're visually impaired or blind. And so that information can help you yourself, or you may be able to help you help someone else in your life who is dealing with diabetes. And it may be in the middle of losing their vision because of diabetes, as we know, diabetes can cause diabetic retinopathy. So, um, the eye issues and diabetes issues can go hand in hand. And so vision aware is setting themselves close up or so we're setting ourselves up to provide information to help you, you all out there as well. We also have a partnership with society for the blind and their program coordinator for careers plus Richard Rueda and they are based in California. And so what we're doing with them is a lot of, um, uh, we have a lot of projects going with them on, uh, career connect. And so to find out about some of those projects that we're doing with, with society, for the blind, you can go to career connect.org, and you can find out information about the national transition conversation that we are, um, that we are implementing and happens every quarter. And if you go to the website, you can find more information about that. We're also setting up a listserv, uh, for, um, for transition, um, transition minded entities, uh, or an organizations to join. And, uh, you know, talk about the services that you provide, uh, how you're providing those services during the time of COVID, which is a really, really important topic at this time. Fine. Um, and so we, you know, we have that partnership as well. Um, one of the other really big things that we're trying to assist with in the field, uh, we're trying to really help American foundation for the blind, with their access and engagement study. Um, and the reason that is so important is because that particular study is, is wanting your boards to be heard about how your services for your child have been impacted during this time of COVID because of us having to go to online education, distance education, you know, the, the social, the social distancing measures, uh, those are the things that are impacting the way our children are. Your, our students are getting their services. And so if you go to family connect.org at the very top, uh, in the slider, you will, you will see how to access that survey. And if you can, if you get to that survey, please be sure and take it and let us know how this time of COVID and the way we are having to provide services, how that's been impacted. Um, it's really important for us to get that information. So if you will, please, that is one of the big things also that we have going, uh, as far as partnership and engagement. Um, one of the other things I want to stress is that we have a community calendar. And if you go to the APH connect center.org, you can view the calendar. Not only can you do the calendar for events that are happening in your area, but you can also submit events that you want everyone else to know about, um, on that calendar. So when you go to, um, the APH connect center.org website, it's really easy. You can scroll down and you can click on view the calendar. You can do it in list format, or in month format. And then right next to that, there, they submit your event button. And so you can always submit your event as well. And so we really ask for about a week or two lead time, if possible, if longer is better. Um, but if not at least that long so that we can make sure that we have all the information that we need to put your calendar event on the calendar. And that gives us time that if we do need information or additional information from me, we can work with you, contact you and get fill in those, those blanks, and then be able to get your event put up on the calendar. Um, one of the other things too, we have our directory of services. And so if you are not in our directory of services, there is a way for you to do that. And so if you, um, go to our APH connects center.org website and search for directory of services, it'll take you to the directory of services page. And on that page, you can actually add your organization to the directory. And that's really important because we have an information and referral line. And the phone number for that is+1 800-232-5463. And when people call the information for a line, the first thing we do is go to our directory of services to see how we can find, um, uh, assistance in your area, uh, or you know, of the United States. And then if we can't find help through the directory of services, then our information and referral line coordinator Alan level then goes digs deeper, does more research to try to find help for you, uh, in your, again, in your area, your neck of the woods. So please make sure and take advantage of that service that we provide through the APH connect center. One of the other things I wanted to mention, we have some webinars that are coming up, uh, on November the 12th, which is tomorrow. We have, uh, Barry Jones who is an award-winning, uh, sports caster. She used to work for the big 10 network. She's also an award winning author. And most importantly, she's the parent of a, of a son who has, uh, who is blind. Um, and he became blind from a tumor when he was seven years old. And so she's going to talk about her experiences, raising a child who was cited and then became blind and how she navigated through that process. And now he's 22 years old. And so he's also going to be joining her on the webinars. So I think that's going to be a really fun and interesting one for people to, um, take advantage of and learn from Bureau. We also have the same day on the 12th in the evening, supporting social connections during physical distancing, especially again, during this time of COVID, you know, people are looking for permission, how do we do that? How do we, um, help support those social connections for our students, which we know is part of the expanded core curriculum as well. And so we have, um, we have some experts who are joining us to talk about how, how we can do that, how we can keep our students, our children, um, socially connected. And then we have on the 16th, the early intervention, visual impairment series, where we are, uh, talking about supporting sales skills. Um, and so we're really excited again about that, because again, with these partnerships that we have with all these webinars that we have, we're able to provide, um, lots of important and useful information to the field. And so, um, we wanna make sure that everyone knows about this, about all the webinars that we're doing. So you can always go to the APH connect center.org website, um, and hover over future webinars. And you can get a list of what's there. You can also get a list of past webinars. Oh, and a couple more webinars I needed to mention. I'm sorry. We have, um, on November 18th, we have an ONM for seniors with vision loss, uh, and, um, and how those services are being provided from a distance. Um, so that's another one that's really important. And I know we've had a lot of questions about how people are receiving those services, uh, via distance education at this time, especially like I said, with COVID. And then, um, in December we have a, uh, career connect webinar called blind kids just want to have fun. And so, um, we're talking about summer camps at that webinar in December, and I know that that six months ahead of time, however, we need to start planning for summer, at least that far in advance for our kiddos and those summer camps are dealing with transition. And so for anyone who has a child who is 14 or up to 22 years old, and talking about, uh, getting ready for transition, um, this is a webinar for you. And so please make sure again, that you're visiting our website APH connect center.org, and you can then again, get a list of upcoming webinars and you can also get access to past webinars that have happened since they are recorded. Um, and then we have them also recorded on our APH YouTube channels. So then you can get, um, get the information from there if you weren't able to participate live during the actual webinar on the date and time that they have. So, um, as you can see, lots of going on, um, at the APH connect center, and we'd love to have you be a part of, of what all this exciting stuff that we're doing. So thank you for your time. And I look forward to hopefully seeing some of you at our webinars,
Sara:That's it for today's episode of Changemakers, be sure to look for ways you can be a change maker this week.