TRANSCRIPT - Measuring and Maximizing Vision: Perspective from a Low Vision Specialist Ð 4/22/24

>>Jennifer: I am a low vision rehabilitation specialist. I'm an optometrist and I did a residency in low vision rehab and then a research fellowship. I like to joke that I came to low vision rehab through a dog bite and a colored contact lens. I was torn between going to vet school and optometry school and I broke up a dog fight and that solidified my idea to go to optometry school because I don't have teeth. And then I was doing, after I graduated, I did primary care optometry or routine eye exams for about a year but was getting frustrated because at that time everybody was -- fresh-look colored contacts were the thing and everybody wanted to change their eye color from brown to purple or blue to green and I was done with optometry so I thought I would go back and get a degree in historic preservation at George Washington University but our director of the school basically told me to get my act together so I went back and did a residency in low vision and that was sort of, you know, not like, you know, children with visual impairments, adults with age-related visual impairments. But after that I did a two-year research fellowship and that was all polytrauma. It was at the Palo Alto VA healthcare system and the majority of my patients were wounded veterans from the Iraq and Afghanistan war so it was more of a polytrauma brain injury rotation. Anyways, that's me and we're doing Hot Topics in Low Vision today and the first slide is the idea that you can hold an individual, either a, you know, a provider, a teacher of students with visual impairment, orientation and mobility. We as individuals, not just in our profession, but in our life, can hold two opposing thoughts. And that might lead to increased effectiveness or increased better outcomes because you can see two sides of the coin. I call this the "and principle" so instead of the either/or, the "and principle." This is what I told my children. You can be right and you can still get in trouble for this. So we're going to go to the first slide. Actually, let me back up a bit. So I'm going to give a case history of a student with a vision impairment and I want you to kind of think about this student as we're going through these different slides. So for this student, the birth history was that he was born at 41 weeks gestation, normal, uncomplicated pregnancy. Normal birth weight. But during the delivery, his cord ruptured and he was taken to the NICU because they thought that he would have to have a blood transfusion. The idea too was that from the NICU they might be transferring him to a different hospital too for increased assistance. But, according to the parents, the kiddo was discharged home on five days. The baby met milestones, although they were towards the later end of that milestone range. He attended -- so the student is from Texas so he attended preschool preparedness for children with disabilities but he started PPCD at the age of 3 for a neurologically-based speech disability. So while in school, the student received speech therapy and occupational therapy. Occupational therapy noted that the student had -- the child had a lot of difficulty tracking, poorly coordinated eye movements. As he got older they started noticing he started to use his finger to keep his place when reading. Parents reported that around the age of 6 or 7 they took him to vision therapy to see about helping him with the tracking and the scanning. Still had a lot of difficulty with that. The developmental optometrist that did the exam reported he had some of the worst tracking and scanning she had seen so a vision therapy program was started for him. The parents reported while he gained some improvements, it wasn't dramatic. Later on, about the age of 8 or 9, he was referred to neurology for, again, the speech disability combined with the tracking issues. So the neurologist diagnosed him with a mild -- definitely there but mild right hemiparesis and gave him a diagnosis of developmental coordination disorder. They thought he might have mild cerebral palsy but it wasn't CP but it was developmental coordination disorder with a mild right hemiparesis and ordered an MRI. That MRI was normal. There wasn't anything found out of the ordinary. When I saw him, we did a retinal exam. He had some congenital anomalies of the optic nerve head. Parents report that he would poorly -- smart kid but would score poorly on standardized tests. He wouldn't read the test and there were things like the STAAR and the MAPS, those were done within 10 to 15 minutes, although the tests were long, the student was finishing in five to ten minutes, mostly because he was click, clicking through the test. Good reader, able to read, so it wasn't for the lack of not being able to read the question, just would tap, tap, tap. Teachers reported that if they had the student read the question in academic work he would not answer the question correctly. If they gave him audio output or audible, he would not answer the test correctly. But if they sat there next to him and read the test question for him, he would respond correctly every time. His best corrective visual acuity was 20/25 in each eye and full fields in each eye. So just think of the student as we go through these slides because we're going to ask some questions at the end. So two of the big topics that I think come up as a provider, as a low vision provider, are does the student that I'm working with need glasses? Do they have to wear their glasses all the time? The doctor recommended glasses but we, for the life of us -- and the teachers cannot -- the classroom teachers cannot keep the glasses -- the patient will not keep the glasses on their face. So there are opposing thoughts on this topic as well. So as a provider, I try to base whether a patient should wear their glasses off of something called the just noticeable difference. Which means that -- which is kind of based on their level of vision. So if somebody has visual acuity of 20/200, that denominator of 200, that's two. So if their prescription were less than two diopters, maybe I don't recommend the glasses because they're not going to make a difference in the visual acuity of how they're seeing. Sometimes that's my initial thought is we don't need to do the glasses but if I put the glasses on the face and the student likes the glasses, then we can recommend the glasses and put it as optional. Other times you'll have a patient that is 2200, the prescription is much stronger. We know that the glasses should absolutely help that patient see better but they're not going to wear them because sensory issues. They're neurodiverse and don't like the feeling of glasses on their face. They're very, very nearsighted and they would rather sit close to the board and have their glasses off so they can see better up close. So, in general, I try to work with some science. The just noticeable difference but also take the patient or the student into the thought process of whether or not the glasses are going to work or be helpful. I have a kiddo that was albinism. Very strong prescription. Very farsighted. A lot of astigmatism. Every time we put the glasses on, during the low vision exam, she would throw dome magnifiers at her head. We decided she did not need the glasses at that point but she could work with the teachers of visual impairment and the orientation and mobility specialist practice wearing glasses. Maybe not glasses glasses but the party glasses you can get at a -- like the Target, I like the aisle at Target for the silly glasses you can wear. They worked with her on that and a year later when she came back, she was willing to put things on her face and we gave her the glasses. Does that mean the year prior when she didn't have her prescription that she wasn't able to access the material or any different than she would with or without the glasses? No. But we were trying to give her time to get used to the glasses and then wear them. And the other thought is do we know -- I'm playing devil's advocate because these opposing views. Do we know whether the glasses are going to make a huge impact? On the better end of the spectrum, like 20/30, 20/40, 20/50 we have a better indication that they might see better with their glasses on. But at 2200 we can guess -- one, we're going to measure but usually with or without the glasses. If the visual acuity improves then we recommend the glasses. But you're not always going to get the students to wear the glasses. Sometimes we want the glasses and sometimes we leave them off. Just based on the student. And it's not going to make their vision impairment worse. It's not going to cause any type of inherited retinal disease to get worse or decline. We would make accommodations in their letter back to the school of making sure that it's getting closer to the board or any other accommodations other than the glasses that could help them see better but we don't necessarily have to fight for the glasses. And another provider might feel differently. So someone else might say you have to have the glasses all the time and keep them on. I have three boys. They don't have vision impairments and it's hard to keep their glasses on. The other thing on opposing view -- and I don't know, you know, there's some audience members who are in Canada. But in the U.S. there's a big talk to now that the glasses are a big deal but also the OSEP, which is office of special education, came out with a clarification that someone -- well, the example that they gave was conversion insufficiency but what they came out with was saying that state eligibility guidelines and definitions for visual impairment, including blindness, may not exclude a child with convergence insufficiency or other visual impairment from meeting the IDEA's guidelines if that visual impairment causes or if that disability causes them difficulty with their educational performance. So there's a lot of thoughts on this because should a teacher of students with a vision impairment or an orientation and mobility specialist work with a child that has convergence insufficiency. Convergence insufficiency affects about 5% of all school-age children and it has symptoms of fatigue, tired. You can see letters that look fuzzy or blurry. They seem to move around on the page but they're corrected to 20/20 and they have full fields. Who needs to see that patient? Is it the teacher of students with visual impairment or is it somebody different like the occupational therapist. And does that student qualify as having a visual disability. There's these two opposing sides. Full disclosure, as a child I had convergence insufficiency. I did not know that. I knew that in kindergarten I would work with the little geoboards where you had to match the pattern to the right and replicate that. It was a wood board with nails and a rubber band. But you would have to take that square or triangle and try to match it. I had a hard time with visual perception but I didn't know I had convergence insufficiency until I was in optometry school and we were taking a test on gross anatomy. They had a microscope and you had to look into it at the station and identify what was the pointer pointing to on the microscope. Even though three or four people had gone ahead of me and they could see that test station just fine, I got to it and couldn't see a pointer. I raised my hand, convinced my microscope was broken. It wasn't microscope, I was just suppressing an image so I was not using both eyes together and therefore I couldn't see where the microscope was pointing to. And so I did some vision training, some vision training in optometry school. I didn't like it so I quit, because it was hard. But I think, and somebody else might feel different, I think that a student with a convergence insufficiency -- not for everybody -- it can absolutely impact their ability to access print in school. I don't think -- and this is just my viewpoint. Somebody else might feel different. I don't think that they need to have a teacher of students with vision impairments. I think they would benefit from occupational therapy during school to be able to help with tracking and scanning. So they're two very different visual disabilities. One is for convergence insufficiency or other disorders, that can be handled through occupational therapy in the school. I don't think it's something that needs orientation and mobility specialist or a vision impairment. But interestingly I pulled up some of the accommodations that they make. That's my viewpoint. But someone else feels different. I pulled up some of the accommodations that they make for patients with convergence insufficiencies and so some of them I'm going to read them off, which are familiar to a lot of us here. Is that large-print guidelines increase the font to 14 to 18.5 in order to reduce visual stress. Make sure their learning materials are well spaced and well organized on the page. Move the student closer to the chalkboard. Place the student in natural lighting. They have others such as use window readers on the screen. Anyway, so this is the first -- so this topic, the holding two opposing thoughts for increased effectiveness is the first hot topic in low vision about whether or not we do glasses. Do you think there is room for patients, you know, that don't have brain-based vision impairment or an eye-based vision impairment to receive services from students with -- teachers of students with vision impairments. So on this one we can pause and if there's any questions in the chat, I'm happy to answer them. Or if you have a thought process or a thought on how you would handle glasses or the OSEP announcement, which was in 2017, I believe. So any questions? 

>>Kaycee: This is Kaycee. We don't have any questions in the chat yet. Sorry, one just came through. Audrey asked will we be required to provide the large print if 14 plus is needed? 

>>Jennifer: No, and so the guideline doesn't have anything other than -- and that's a good point too. The guideline doesn't have anything other than if the impact of the condition -- and they just gave convergence insufficiency as an example, I think. The way I read it and interpreted it. But they don't say guidelines of what you have to do. Not every kiddo with a vision disability or visually impaired is going to have the same requirements. I think it's the same with convergence insufficiency. I think they just used convergence insufficiency as an example. If you think about other cases -- so if you think about another student that doesn't have an eye-based vision impairment and has a brain-based vision impairment, sometimes they are 20/20. Sometimes they have full field. They just have difficulties tracking. I think that is one of the examples where you would need a teacher of students with visual impairments and probably combine with occupational therapy as well. But I think the example that they gave -- I think they listed it more as an example than just convergence insufficiency. I don't think they would hold it to 14 point font. I didn't have it growing up. I didn't know that I needed it. I don't need it now, but that's a good question. Any other questions? 

>>Kaycee: Nothing yet. 

>>Jennifer: I'm going to go to the next slide. So this is a huge one. Huge, huge, huge. This happens all the time. Visual acuity and visual function. So visual acuity does not -- I tell this to people all the time. Visual acuity does not equate to visual function. Just because someone sees 20/20, 20/30, 20/40 on the chart does not mean how they're functioning in their day-to-day life. If you think about an examination room, the chart are typically sharp black letters on a white background. The lighting is controlled. Typically the rooms are free of clutter. And we are using special tests to try to get a good assessment of a patient's vision. But when we're measuring -- low vision exam is differently but if you have had a routine eye exam and you're getting your visual acuity in your visual fields and that's not a detailed visual field but could be finger counting, like how many fingers do you see? Do you see two? Do you see four? But it's not -- that's not how you behave out in the real world. So if you think about things like contrast sensitivity. So we take your visual acuity, that's one measure of somebody's how they see. But if you take your contrast sensitivity, which is how you deal with shades of gray or deal with things that are printed in poor contrast, like the newspaper where it's black letters on a gray background. Or if you think about pouring coffee into a cup, dark coffee into a black coffee mug. Contrast sensitivity has a very huge impact on how people function day-to-day. If it's a bright, sunny day and you're bothered by glare, so you have a glare disability and you have bright sun and something is printed in poor contrast, you're looking for a street sign but let's say it's black letters on an off-white background. That's going to be really hard to see. Or if you think about your color vision. So color vision, children with a color vision impairment can struggle greatly in schools, especially with color coding. There was an article that talked about how kids, preschool kids with color vision disabilities were picky eater because they couldn't tell what the food was on their plate. And so visual acuity and visual function are very different. And I think that that's one area where the low vision exam really shines is that we're not concentrating on just one aspect of somebody's vision. At the same time, it's a limited time that we're with the patient, typically 90 minutes to 120 minutes and our environment is still very well controlled. So how they go out and do their day-to-day life is going to be very different than what we get in the exam room. And I try really hard during my evaluation to stress that to the patient and the caregivers. And then for students, when we're writing reports back, I try to let that be mentioned as well. This is a slide that I love and I recreated it but I have to give credit to the person that did it. Her name is Rebecca Rosenberg. She is a entrepreneur. Has albinism. And her acuity is about 20/80. And she is the president and CEO of a company called ReBokah. A lot of people think it's a play on her name of Rebecca, but it's not. If there's any photography aficionados out there, I guess ReBokah is a photography phenomenon where the front of the picture is clear and in focus and the back is blurred out. She created an app called ReBokah. Right now it's just available for iPhone. It's not available on Android at the current time. You can do a singlehand slide to go up and down and you can really manipulate the colored backgrounds of things. And so she said as a child she had -- when she was first shown devices from the state -- she's not from Texas -- but from the state, she had the choice as someone with ocular cutaneous albinism as having a big CCTV or audio. She could pick between the two and she ultimately chose neither and would get really close to the page. But she is kind of -- her goal of -- her company ReBokah and this app called ReBokah is she is keen on visually enhancing things. Not visual replacement but visual enhancement. She had a slide, when she was given a presentation -- this is, again, on acuity versus function. She said these are things I can do. I can drive. So she can drive. Again, in her state where she's at, 20/80 allows her to drive. She doesn't need to have a bioptic to do so, so she can drive legally. She says that she can read most text sizes. She can access print in books. She can read most text on the screen. She navigates without a cane so she feels safe not using a cane. She can use a computer and she says she can use the computer without any type of software. She's not using Zoom text or any other type of screen enlargement software. And she can travel independently. These are things that she can do. She can drive, read most text sizes, navigate without a cane, use a computer, and travel independently. But even though she can drive, she has a hard time and she can't navigate even in a familiar area. She's a safe driver. She's a good driver but she won't be the navigator. She can read most text sizes but functionally she has a hard time following along with presentations, especially if it was written in poor contrast. She navigates without a cane but she has a hard time hiking on even or uneven terrain. She can use a computer but she can't find her cursor. She travels independently but she can't read departure boards. So I think that's a really interesting way to kind of talk about acuity and function is that even though you can do some of these things, functionally you may have a hard time doing aspects of them. I had a patient recently that had Steven Johnson syndrome after a reaction to penicillin and she had a lot of scarring on her cornea. Her eyes are very dry now. Her vision is very distorted. Even though she can get to about 20/20, 20/25, she is spending three to four hours a day caring for her eyes so she has to wear a special type of contact lens that's rigid, called a prose contact lens. It smooths out the cornea from the scarring and provides some relief for the discomfort that she has. She has to take those out multiple times a day, put drops in them and put them back in. So a good chunk of her day is spent caring for her eyes and it makes it hard for her to maintain the job that she had. So any questions on that topic on visual acuity versus visual function? 

>>Kaycee: This is Kaycee. We did have something come in. Shelley shared that they're having a real problem with college board. They are requiring VI students to use a computer to take the PSAT or SAT test and they requested large print paper copy tests. But they're requiring that computer. Do you have thoughts on that? 

>>Jennifer: Is that here in Texas? 

>>Kaycee: Yes. 

>>Jennifer: Well, one, I would think that it would be sort of in violation of ADA and IDEA and particularly Section 504 if a student is having difficulty seeing on the computer because of the glare. I would imagine that you would -- well, have you tried any of those, suggesting it's a violation of ADA? Were you able to reach out to anybody or is it just local at the school that you're at? Have you reached out and gone any higher than the local school or the school district? 

>>Kaycee: She said they don't seem to care. They refused to give us a paper copy and they requested it from college board. College board is the company that does the SAT and PSAT so they're separate from the educational system. It's like a testing company. 

>>Jennifer: Is it the school that's -- is it college board that's requiring it to be done on computer and not on paper? 

>>Kaycee: Yes. 

>>Jennifer: Okay. Have you contacted like an ARD advocate or someone like an ADA lawyer? It's going to be hard for this particular student. I would imagine off the top, I would imagine that that can't really fly. So a lot of this came back, I think, when there was an operation Varsity Blues which is when the very wealthy individuals, a lot of them were actors or actresses were trying to get their students into better schools. And they would claim that they had -- I don't know if you remember this but it was Operation Varsity Blues. I know they're cracking down on this but they were trying to get all different types of disabilities, extended time, someone to orally read for them on these SATs, PSATs, ACTs and that was cracked down on. I haven't heard anybody -- most of my patients, when they're trying to take the ACT, SAT, and PSAT, those standardized tests through the college board, in fact I did one last year where he was able to have it on paper. I had to write a letter. I had to fill it out and fill out the paperwork that they gave me but we had to write a letter saying why. And specifically list which accommodations he needed and why, including having a human reader or human scribe read it to him, as opposed to having it recorded. So that one -- that's tough. But my initial thought is it's an ADA violation. And then, by that, IDEA and Section 504 probably too. I don't know if anybody else has any thoughts on that. 

>>Kaycee: Okay. Thank you so much. 

>>Jennifer: Yeah, that's a good question. It's frustrating because I feel a lot of this really started to crack down after that Operation Varsity Blues and it's frustrating because it kind of goes back to that case report at the beginning. So that student, sharp student but would click the button just to get out of the test. When it was an automated on the computer test, just click, click, click, click, click. Grades in school were fine, according to the parents. But wasn't going to take a test on a computer. And would answer the question correctly if there was a human reading it to him versus having audible. There needs to be an option on how they do their best work and I don't understand why, if someone was monitoring or proctoring the exam and they were taking it on paper, why that wouldn't be allowed. So I do have an advocate who used to be in special education, the name of an advocate who used to be in special education within AISD. And I can reach out to him and see if he knows of any other options for you. He's very well versed. All right. So any other questions on this one before we go on to vision on the fly? Nope? Okay. So vision on the fly. This is what I call murky versus pristine data. Sometimes you go in and I am like confident that I knocked it out of the park. I measured visual acuity well. I know what type of magnification I'm going to prescribe. I'm determine their critical print size. Critical print size is the smallest level of magnification that you need for your fastest reading speed. So I got their critical print size down. I've got the acuity reserve recommended. I've got really good visual fields and everybody's happy. And then there's other exams where I'm like I don't know what just happened. Because it's just all over the place. I call this vision on the fly. In low vision rehabilitation, for near acuities, I really like using -- and most low vision providers use an M unit or M notation. This is the read card. They start really big at 8M print and it goes down to 0.3M print, which is super tiny to read. Black letters on a white background. You can also get it at white letters on a black or reverse polarity. And the MN stands for Minnesota reading test. But you can get this as an app and put it through the iOS -- you can get it as an app through the iOS operating systems and put it on a tablet. You can use it on a tablet when you're doing assessments with students. But the nice thing about an M unit acuity is that one M equals 1.45 mm. So you can almost measure anything and write that down in one of your assessments and bring it into a low vision exam and say they can see this size object from this distance. So with vision on the fly you always need a good tape measure. And then measure how big that object was. So this is something that I do a lot for my kiddos that are nonverbal and have cerebral visual impairments. I just made a little kit with all these different cotton balls and then kind of measured out what size they were in millimeters and what that equated to with an M notation. And then is it a perfect acuity? No. Can I give some level of vision? Yes. And so sometimes that level that we can give gives a good starting point on to what type of visual behaviors to expect or what type of difficulties they may have. And if you can't get a standard acuity, you can do something different just by measuring the size of what they're looking at and how far away they're holding it. The other thing that I really like about -- another thing that kind of comes out sometimes where things just feel murky is if you suspect that someone -- you might have a case where someone is not telling the truth. Like maybe they're not as visually impaired or maybe they're not as visually impaired as they're reporting. And so in the handouts there's case reports and one of these is a case report of a student who was exhibiting different visual behaviors at school whenever the O&M and the teacher of students with visual impairments was there. And so when she came into the exam, they were concerned that she needed to be off their caseload. She could walk without the cane without difficulties when they were observing her. But if she noticed they were there, she would walk into a wall. Or she didn't need any accommodations when the teachers -- like, she's looking at her phone. No difficulties seeing her phone. No difficulties hanging out with friends but doing work she couldn't do that. So she came in for an exam and we were able to measure things like how far away she was from her cell phone and what size print was she looking at her cell phone. She measured going in at 20/6000. So her acuity was measurable as 20/6000 but she could read signs on the wall. She could read texts from her mom. We were able to show that her vision was such that she didn't really have a vision impairment. Didn't need to have services of a teacher of students with vision impairments or a mobile instructor but gave her an out too. She really wanted to be able to drive and she really wanted to be able to join the military when she was done with school. So this helped her do that and at the conclusion of the exam my understanding was mom was happy and student was happy. Sometimes you have to figure out different ways to measure visual acuities either because you have a student that can't measure or look at a standardized chart or you need to find a different or alternate way of measuring somebody's vision that isn't threatening to them. So any questions on that? 

>>Kaycee: We didn't have any questions. We did have someone share they're dealing with a similar situation right now. I think that was really helpful. 

>>Jennifer: It's tough. You can't come right out and say this person is lying. But you do try to prove your case that all things are not as they seem. And so the fancy word that we'll use in our exam sometimes is non-organic vision loss. Non-organic vision loss can be very -- you know, where the vision is fine. The brain is fine. How they're seeing is fine but they have something -- typically like a psychological event that caused trauma and it's preventing them from seeing clear. Another example -- so this kiddo was -- probably had some psychological stressors in the background too but it wasn't true non-organic vision loss. I did have one who was a soldier who, long story short, saw a lot of stuff in Afghanistan that traumatized her. The treatment for non-organic vision loss, true non-organic vision loss is counseling and therapy. So she spent over a year at Walter Reed Army Hospital on the East Coast and it was all counseling and psychology and psychiatry services. After about a year or so they realized she knew that this was psychologically based but just couldn't see better because of the trauma that she saw. And so she actually came to a blind rehab center through the VA and did therapy there because her goal was to get back home with her kids. So she ended up getting the tools she needed to see better, knowing, and everybody knows, that it was just an adaptation that her brain had made for the trauma that she had seen. Yeah, it's tough. Next slide. So this is a pretty need statistic and document should be in your notes. But there are more patients with vision impairments than they previously thought. There's about 7 million individuals in the U.S. with vision impairments and about 1 million of those are legally blind. But the really neat statistic -- not neat but what was neat about this particular study was this was the first study that they did that kind of helped categorize and identify vision loss under the age of 40. So in the U.S. there are more than 1.6 million people with uncorrectable vision loss under the age of 40. Of that about 140,000 of them are legally blind. So that's a lot of patients with -- I think when you take the whole statistic of about 7 million are visually impaired, one million legally blind, that's one in seven people in the U.S. who have a vision impairment. What do you think -- and if anybody -- I'll ask the question and see if anybody answers it. What do you think is the most common cause of vision loss in children right now? Anybody want to answer? So it is cerebral visual impairment. So the majority of children or the majority of cases of vision loss in children in the U.S. is a cerebral visual impairment. So there are lots of really neat studies coming out -- they're doing a lot of research and studies. There's great research coming out of -- I think it's Harvard with Dr. Mimmette. And then there's a lot of stuff coming through, like CVI Scotland has a really good research and a website called CVIscotland.org. There's tons of research being done. The Vision 2023, which was in Denver this year, the whole main topic of that program was cerebral visual impairment. I'm going to show a video here because I know we're going to get short on time. And then circle back around. But the diagnosis of the student that we talked about at the beginning, does anybody have an idea what his vision impairment was due to? So thinking about that case that we talked about at the beginning. Anybody can chime in and Kaycee can, maybe if you put in the chat box, Kaycee, if there's any diagnoses popping up. Like what do you think the diagnosis of that student was? 

>>Kaycee: CVI. A few different CVIs coming in. There was a question from Amy asking about the difference between Cortical Visual Impairment and cerebral visual impairment. 

>>Jennifer: That is a great question. We now call it -- the more correct term to use now is cerebral versus cortical. The cortex is in the back but the whole brain can be involved in a vision-based impairment. So you have these dorsal and ventral pathways where the information goes back from the eyes to the back of the brain. The brain processes it and then it comes forward again. And anything along that pathway up here going forward and back, if that's impacted, can be a cerebral visual impairment. So the new preferred term is cerebral visual impairment versus cortical. It doesn't have to happen just in the back of the brain. And cerebral visual impairments I think are kind of tricky. When you think about, you know, when you think about albinism, we know we need sunglasses maybe or transition lenses and we need hoodies and hats and increased font. And we need high-contrast materials, maybe. And then for someone with RP or congenital glaucoma, we don't want to over magnify. We know what to do with -- there's specific ideas where I'm not going to over magnify for someone with field loss. I'm going to magnify something for someone who can't see the central loss but has a full field. But with cerebral visual impairments it's harder because it's more ambiguous sometimes and we don't have a clear-cut idea. And then the data is not as clear and murky. This is full disclosure. The student that I mentioned, that's my son. And we didn't catch it until he was 12. All of these different diagnoses kept piling up but we didn't catch it -- and I'm his mom and I work with patients with vision problems all day long. Finally I was like there is something off. I was at that lecture at Vision 2023 and I was like my kid has a vision impairment. I took him to a colleague at the Lighthouse for the Blind in Houston and he does have a cerebral visual impairment. That's how tricky these students with 20/20 and full fields can be but we diagnosis CVI by a history of neurological impact. So for Sam, he was a cord rupture. He bled out and he has a huge, still to this day, scar on the back of his head. He's very tactile defensive about it. Abnormal visual behaviors. You know, non-guided reach or making slight turns to see better. Having horrible difficulties with tracking and scanning. Again, the presence of these unique visual characteristics. So the diagnosis I feel, as a provider, is not as clear cut on cerebral visual impairment. And once you do have that diagnosis, where do you go? We're also learning how to work with patients with vision impairments. On this next slide, it's a video of a gentleman with a cerebral visual impairment. And one of the doctors talking, her name is Dr. Nicola McDowel. She has a cerebral visual impairment herself. She had a stroke while swimming. She was getting ready to try out and compete for the Atlantic Olympics and I believe her stroke occurred in the water at the age of 16. She had a cerebral malformation in the back of her head. I'll play the video and then questions and answers. Here's the video. [ Video ] 

>>Would you believe me when I say there's nothing wrong with my eyes but I'm vision impaired? My name is Rafael and I have a condition called cerebral vision impairment or CVI for short. CVI affects the way I see the world, not because of my eyes, but because of my brain. Normally the eyes send electrical signals to the brain which turn them into images we see. But for people with CVI, these signals [Inaudible] for me, when I was born, my blood sugar level was low and I developed a condition called hypoglycemia. 

>>A huge portion of our brains are devoted to creating a picture inside of our minds. That creation of the picture takes up at least 40% of the whole brain's visual function. 

>>People with normal vision can see multiple things at the same time. You probably can see several signs all at once. But I can only see one thing at a time. And the more stressed I get, the fewer things I can see. 

>>The thing with CVI is that you can't -- it's like a torch. You're focusing on one thing at a time you take it away from where you're looking but you don't know where the first thing was in relation to the second thing. 

>>The amount of information I have to process when I'm walking can be a challenge. Sometimes, when people greet me on the street, I can't see them clearly. 

>>So if you think about it like the old computers, when I was young, that first came out. Basically if you had too many applications open on the computer, they would freeze or you would have to reboot the computer to start it again. So it's a little bit like that for people with CVI. 

>>Common social interactions can be a challenge for someone with CVI. That is why many people like myself are often mistakenly diagnosed with Autism Spectrum Disorder. 

>>The majority of the people, though, have a problem with vision in which they have difficulty interacting with other meme. They are unable to find somebody in a group or see somebody in the distance because clutter is a big problem. 

>>I am learning how to live with CVI. When I am walking in an unfamiliar place, I look back every ten seconds to create land lines to create a map in my mind. And I'm not the only one living with CVI. 

>>In the region of 3.5% has recently been found to have cerebral vision impairment. That's enormous. It's one child in every class. 

>>Acknowledging my disability has opened up my mind to new horizons. My disability doesn't define me. 

>>Raphael has come along a lot in the last 12 months since he graduated. He is the voice of our newsletter which goes out to over 1,000 participants in our community. 

>>I studied and graduated from university with a journalism degree. Now I am working as the editor of a newsletter surrounded by people who value my work and accept me for who I am. [ End of video ] 

>>Jennifer: Any questions? 

>>Kaycee: We had a comment from Amy saying she can see how not being able to make eye contact because of the CVI could make folks automatically, you know, be drawn to that diagnosis of autism. We certainly see that with lots of different diagnoses in our field. Melissa asked a question. Will you please provide the contact information for the advocate that you mentioned? If he isn't able to help me directly then I am hoping he can direct me to someone who can. 

>>Jennifer: 100% yes. So he actually -- he's wonderful because his background is in special education but he's a lawyer but he's an advocate within a law group. And so that's their area of expertise so I think I can absolutely provide that contact information for you. 

>>Kaycee: Jill just asked will you give some info on what helps your son educationally? 

>>Jennifer: Yeah. So for us what they are doing is he does use, because of spacing when he's writing -- so he does use the -- and he still -- so he does not have -- currently he does not have a teacher of students with visual impairments. It's being handled by occupational therapy at his school. I'll step back and say he's at a public charter. That might be one of the reasons. But he's using the raised paper so that he can tactually feel. It helps him with his spacing. When he's writing, they're trying to kind of wean him off of it. But he can't keep on a line. So he's doing raised-line paper. We are doing typing but with the school -- like with his CVI he has terrible discrappia but the amount of help he can get in school is limited. He has a preferred font size and a preferred style, which has increased spacing between the letters. They are working very hard with him. The conundrum for us all right now -- he's a very smart little kid. He has an A in math and he's got Bs and Cs in others. The more reading and writing is involved, the more the gray -- like the math is okay for him but having to do all the reading and writing. We're trying to figure out how to wean him from having someone next to him. And we don't know what the disconnect is for him about having it read to him by a human voice versus read through speech output. He just won't pay attention to. So we want him to try to be able to do -- show what he knows, kind of thing. And then he did, in the beginning, have sort of a monitor in the hallways because it was his first foray, after COVID, back into public school and he would spook in the hallways when they were changing classes. And he would hide out in the bathroom. He would get a lot of tardies and get written up for that. He does have someone who occasionally monitors him but he's gotten better over the year and doesn't really need that for transitioning classes. But for a while he had somebody helping him transition classes because the crowds were too much for him.