Navigating The Education System Blind | Episode #4
Episode 4
Navigating The Education System Blind
In this episode Dr. Droste and Shelby talk about the complexities of navigating the education system as a blind student. Starting from a very young age Shelby recounts her experiences and gives insights and options of how to respond to specific challenges. Topics include navigating the dynamics of IEP meetings, the importance of learning braille, how to relate with sighted classmates and much more.
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0:00:02.1 Dr. Patrick Droste: We would like to welcome the world to our Through Our Eyes podcast brought to you by the Pediatric Retinal Research Foundation. My name is Dr. Patrick Droste, I'm a pediatric ophthalmologist at a practice in Grand Rapids, Michigan. I've been taking care of visually-impaired children, young adults, and now older adults. And it's been a real experience watching them negotiate the different challenges in life. And one of the things that I've noticed is challenges with our educational system. We have challenges with our educational system for sighted children, those that have different patterns of learning, they have nothing to do with their vision. And then we have challenges for children that do have tremendous problems with vision. But in addition to that, through heredity patterns, they also have a learning difference, which makes things doubly hard. So that's what we're gonna talk about today. Shelby?
0:01:00.0 Shelby Craig: My name is Shelby Craig. I am almost 27 years old, and I am totally blind. I have been all my life. I graduated from college back in 2020, and I currently seeking or actively seeking employment.
0:01:18.8 DD: Alright, tell me what your three components are.
0:01:21.9 SC: Alright, so I actually have four of them, 'cause I tend to be an overachiever sometimes. [chuckle] So the first one that I have is advocating for services and accommodations in IEP meetings. This is gonna be a big one. The factors that are going to hinge on advocacy as far as resources and accommodations are concerned are going to hinge on a couple of different things. First of all, knowing the types of resources that are available to you and that you have a right to request. That is going to be a huge thing, especially, I mean, not just for parents, but for students. You know, as a student, obviously, if you're starting out in elementary school, you're not necessarily going to be able to advocate for yourself in IEP meetings. But once you get older, it is essential that the student becomes part of their own IEP meetings, because nobody knows what they need better than they do themselves, especially in high school and middle school. So...
0:02:28.8 DD: Would that be one of the things that you would recommend, for example, when parents do go to the school board for a requested IEP, to have the student with them?
0:02:39.2 SC: It really depends on the age of the student. Obviously, with younger kids like elementary school, it wouldn't really be conducive for them to be a part of IEP meetings, because they obviously...
0:02:49.3 DD: They just don't know enough.
0:02:50.9 SC: Yeah. But as far as middle school and high school, definitely. Yes, absolutely.
0:02:58.6 DD: So let's say you were a parent and you had a visually-impaired child, and they were struggling a little bit. What would be the three things on the top of your list that you would like the school board to consider for your child?
0:03:13.1 SC: Well, first and foremost, I would want them to hear directly from the mouth of that student, from my child, what it is they were struggling with. And you can have the child word it in such a way that it is specific as to how they struggle, what they struggle with. But also you could get them to say things like what could be improved upon or what could make it easier as far as getting over the hurdles that they're facing. So what they're struggling with and how they feel that it would be best for teachers to help them overcome these struggles.
0:03:52.7 DD: Now, what is your recommendation for a parent of a child who tells you, "I have trouble with... I just don't see well where I'm sitting, or I can't see at all.
0:04:04.9 SC: Obviously, the first step that you would probably want to take is, if they haven't had this done already, to do vision screenings and that sort of thing in order to figure out what exactly their visual acuity is. In addition to that, if they were to say that they were having trouble seeing, if needed, we could probably introduce corrective techniques in order to help improve their vision. Or a lot of times in the sense where they can see a very limited amount of the board from where they're sitting, it could just be a simple accommodation of relocating that student to a better position that they can see the board.
0:04:49.0 DD: When do you think the teacher consultant for the visually impaired should be included as part of their regular program in their IEP?
0:04:57.2 SC: As soon as they find out that that child is visually impaired. In order for this to go as smoothly as possible, I definitely think that the teacher and the parents should all be on board and all make the commitment to helping this child the best they can. So that includes, you know... That entails as soon as you know that the child has a visual impairment, get the teachers on board, get any specialists you need in the room like O&M instructors, Braille instructors, whatever it is that that child might need in order to build a strong academic foundation.
0:05:39.9 DD: Now what if the child says, "I don't wanna learn Braille. I don't wanna learn Braille, I just wanna be left alone." What is your advice on that?
0:05:51.7 SC: So I would just try my best to explain to this child that it might be okay to listen to someone who is reading down the road but as the material gets tougher, it's going to be essential that they have the literacy skills that they need in order to be on the same academic level as their peers. And the thing...
0:06:17.2 DD: I think that's a really good point, and I'm glad you brought that up, because what I see in my practice is we have this diverse point of view. We've got parents and school teachers that really want to teach their kids Braille, the child is dead set against learning the Braille. And he or she really wants to try and succeed with the vision they have, and in many ways they can. But the key thing that you brought up is that you won't stay competitive. You won't be able to read the amounts of things that you have to read and stay competitive with your peers, and then you will start withdrawing.
0:07:02.9 SC: I think a lot of it, too, is on a case-by-case basis. If they have some usable vision, and there is no danger of them losing any of that vision, then they may be able to get by with the basics of Braille and having corrective visual techniques in order to read large print and that sort of thing. But when it comes to a person who has no vision at all, it is essential that they gain the same skills that are necessary to compete on the same level as their peers. And I feel like, especially with a lot of kids, they see their peers getting out and doing all these things and getting exposed to a lot of the opportunities that literacy can provide. And they think to themselves, "Gee, I kinda wanna do that. I kinda wanna do what my friends are doing." And the only way that they can do that is through literacy. So that's a very important thing.
0:08:04.0 DD: I think that's very important. Another thing that you've brought up that I think needs to be considered in the education arena is how do they relate with their vision or their sighted classmates? Do you have any tips on that?
0:08:21.3 SC: So obviously, and I know that when I was growing up, I dealt with a lot of this when I was coming up through school. A lot of times there tends to be a... You know there's that blindness. Blindness can propose a lot of different challenges. But one that I face, even to this day, is the factor of isolation. And you find this a lot in public schools, particularly when you go to a public school where you're the only blind student and everybody else is sighted, you tend to see this sort of difference and moving away between those who are sighted and those who are blind. A lot of that is due to barriers that are caused by stigmas and stereotypes about blindness. For example, "She's blind, so she must be stupid. She doesn't understand like the rest of us do." A lot of the breaking down of those barriers is going to depend not only on how the student acts, but also how the parents and teachers present that student to them in a way that other students can understand.
0:09:35.6 SC: An example of how this could be done is to a class of elementary school students. You might read... Actually I'm gonna digress for a second, but when I was in elementary school, I started up my own literacy program. And I basically went to schools all over the Tri-County area, and I taught what Braille is, what it means to be blind, and how people can interact with... Particularly how young children can interact with their peers who are blind. And it was very interesting, because I read them print-Braille books, and I would actually take out blindfolds, put them on the students, and I would teach them all how to do sighted guide. So if you really do your best to break down those barriers of stereotypes about blindness, you will typically find that it's very easy to get along with other, with your sighted peers.
0:10:37.7 SC: Now, that's not always gonna be the case, bullying is a very real thing, everyone deals with it at some point. But the big thing is the student has to learn that they can't let those people drag them down. You know, my mom said it best, "At the beginning of our lives, we're all given a deck of cards. And the game of life is all about playing the hand that you have and doing the best you can with what you've got." And as long as the students learn that, then life will generally go a lot smoother for them, than if they just have a pity party and feel sorry for themselves.
0:11:19.4 DD: What would be your suggestion? Let's say you have a child that you're counseling, and they're having a lot of troubles with being bullied and excluded. And the parents are just not getting any response from the school board. What would be some of your suggestions?
0:11:41.5 SC: If I were the parent of that child, one of the things that I might suggest is trying to... Maybe not doing this with my child, but I might try to pull the other child in. And, you know, to ask them, "Why are you... " And I wouldn't be mean about it, but I would want to know why they feel the way they do about blindness. And I, again, I might try to put them in that position where they're forced to wear a blindfold, maybe not forced, but where they have to wear a blindfold for at least a day and go around and see and experience firsthand a lot of the difficulties that blind students have to overcome. In a way, it might even be worse for the person who has to wear the blindfold for a day, because they don't know Braille. They don't know how to use a cane. They can't do any of those things, and the blind student has had experience with that. So my child would have to show them how to move around.
0:12:47.6 DD: We have seen this very effectively in our sports days where we have goalball, beep baseball, and rock climbing. All of the siblings of the visually impaired are invited to come to these days, but we always get a revelation when we make the siblings put on the blindfolds and try to catch a beep baseball, when they can't see it. And, or climb a rock wall without seeing it. Or play a goalball and have to just listen and feel with your hands where the ball is coming from. And it's really an eye-opening experience for both.
0:13:30.7 SC: Absolutely.
0:13:32.0 DD: It's for both. You get an eye-opening experience. And what you've just brought out here is, is exactly what I think is something parents could take home from listening to this discussion, is when their child is being bullied is to approach the administrators or the higher-ups and say, "Let's bring this person in. Let's talk with them first, and let's just see how they do when they have a blindfold on." And that, that might just change everything. So that's one very solid piece of advice, Shelby, and we thank you...
0:14:08.8 SC: You're welcome.
0:14:09.0 DD: For that. Alright. Let's move on a little bit. Now let's talk about high school curriculum. Alright, you're coming out of middle school and you've done pretty well, but you definitely do better in music than you do in math.
0:14:27.8 SC: Absolutely. [chuckle]
0:14:29.3 DD: And the math is just a killer. Alright. And Johnny or Janie does not want to do math. So what would be your recommendations for that patient or that student?
0:14:46.6 SC: So first of all, Janie, I do not blame you. You're talking to someone who is numerically impaired as well as visually impaired. So in order to keep math from standing mental abuse toward humans, I feel like there are a few things that should be kept in mind, particularly by the teachers. First of all, math is an extremely, extremely visual concept. And I mean, especially when you start getting into things as complex as geometry, planes, parabolas, all those sorts of things. It is... And you have to understand, too, blind individuals tend to create different mental pictures than the ones that you might see in your head. So if you were to... Take numbers, for example, in Braille, math is done linearly, but visually it is done spatially. So if I were to ask the class, "What is 64 times 7?" You know you would automatically get this visual representation of how you could go about solving that problem and then just pull the answer. But for the blind, that's really, really complicated, you actually have to sit down and figure out, "Okay, where... Do I have to carry this number? And how can I transfer this...
0:16:17.7 DD: How do you do that? Like for example, the question of 64 times 7, a sighted person would write those numbers down and multiply the digits and carry. Now, do you not do the same thing?
0:16:34.6 SC: So again, you're talking to someone who is numerically challenged. So I honestly, I have been through probably several different math courses, and I honestly cannot remember what it is I learned in any of those classes. Honestly, my best bet is probably going to be plugging the numbers into a calculator and getting the answer that way. Now, I will tell you there are other blind people who are much smarter than me in math, and there are some who can genuinely tell you how to solve the problems and get the work. So it might just be a learning disability, a learning disability on my part that I can't understand numbers. But the big thing that...
0:17:26.7 DD: And I think you just touched on it there, because reading and writing are a function of the brain and not a function of the eyes. And it just so happens that most of us have one side of the brain that's stronger than the other. And then if you take an insult in birth, like for example, prematurity or something, sometimes one part of the brain doesn't get the blood supply that the other side does, and you have some weaknesses.
0:18:06.5 DD: But sometimes the blood supply is perfect, but just the DNA that you have that you inherited from your parents has not programmed your brain to process written or mechanical information. And that has nothing to do with the blindness. But when you hook the blindness up with the inherent disability, inherited from the parents, you have a double whammy. You have a double whammy. And we do know that for most part, visually impaired people are more creative on the right side of the brain than the left. And they're very good in music. They're very good in detecting pitches. They're very good in even art, and they tend to be good readers.
0:18:53.0 DD: So I think the message we wanna give our audience is that we need to, one, find ways to get around this block, because math is essential for living in society, and...
0:19:07.5 SC: Sorry, go ahead.
0:19:08.4 DD: And a multi-sensory approach to teaching the math, like taking a triangle and putting it in a form that the child can hold in their hands and they feel the triangle through proprioception, and by doing that, they have a mental image. Right? And you can say, "An equilateral triangle, well, it's one that has all three sides on the same," and they can feel that. And then you can fold it into a trapezoid. Then you say, "Okay, now I feel how the trap... So in other words, you're using proprioception to replace your sight. And then for congruent angles, you just say, "A plus plus B plus equals C plus," and some things start to click.
0:19:56.7 SC: Yep. And honestly, I mean, obviously each equation is gonna be different because like if you start talking about three X plus two equals 14 or something like that, you know, obviously everybody knows how to get X, but no blind person is going to want to show their work because a letter divided against a letter does not, should not, in our minds, make anything. So the best suggestion I know to give teachers and parents as far as this goes is that if you have a blind student in your class that you are trying and struggling to teach math to, put it into a format that they will appreciate. For example, if you are teaching about geometric figures, one idea that I've been playing around with is trying to draw them in based on their creative outlets. So, you know, for example, if you were trying to teach some basic concepts, you might do it through a game, or you might try to maybe for geometric figures, you could try translating them into musical notes so that they could hear the different, you know, the different planes of the figure and associate that with different music notes. So try to draw them in and make it fun. And obviously this is gonna get really, really tricky as you get into more advanced concepts, but...
0:21:42.4 DD: But it all starts with the beginning...
0:21:44.8 SC: It does.
0:21:45.1 DD: And just developing the framework, and I think that that's...
0:21:47.1 SC: Make them want to learn it and they will come back.
0:21:50.3 DD: There was a doctor by the name of Samuel Orton who was a neurologist. He was a physician and he had a boy that came in that was very, very smart and he had no visual impairment, but he couldn't read a word, could not read a word. And if a word was as simple as H-O-T or as complicated as Mississippi, he couldn't read it. And so he felt that this was a medical problem, but it needed to be mediated or treated by teachers. And that is the same thing that you're talking about right now with the visually impaired community, using extra visual methods to accomplish visual tasks. And that's... That's exactly what you do, you know? So this has been very, very insightful and I hope some of our listeners get something from it. I have one more thing I'd like to just, just bring up. What do you do if your child is in their IEPC, it's planned, but it's not working? It's not working. The child is coming home, he does not want to go to school. He does everything he can to avoid going to school the next day. What would be some of your suggestions for this?
0:23:34.7 SC: So I will tell you that my parents have been in a ton of IEP meetings for me and my brother. They can get extremely heated if... I mean, especially if you are faced... If you are a parent, and you are faced with the issue of your child not getting what they need, it can get extremely heated to the point where you're tempted to call in an attorney or a lawyer and try to get it sorted out. So, what has to happen in order for this to go as smoothly as possible is that every single person in that room needs to be on board with helping that child to the best of their abilities. Everybody needs to know their jobs. Everybody has a role. And if there is one person who is not willing to fulfill that role, it's going to be your job as a parent to find another person who will fill that role and do their best to fulfill the needs of the student. As a person who is a parent or a teacher, your first priority should be fulfilling the needs of your students in all areas. That is top priority. If you are not willing to meet that student's needs, then you really should not be a teacher.
0:25:07.9 SC: And as far as... You know, I think a large part of it is also going to be the student relaying to the school board that they will not be able to fulfill their potential and to get to their potential unless they have this or that accommodation or this resource. So student advocacy again is a big thing, but there are times when students have to leave the room and parents have to step up to the plate and say that this is not working and be prepared to take action if they continue to fail to reach that student's needs.
0:25:54.6 DD: Let's go back to the very, very beginning of our discussion today when you said that it was important, particularly in middle school and high school, for the child to have a say in what is being planned for their educational programs. Taking what we've talked about this evening and you have a child who really can voice things pretty well to their parents, but when they get in a room with people, people of authority, they kind of get intimidated or bashful or whatever you want to call it. How, you as a parent now, would coach your child to get across, in their words, to the people what their real issues are? Do you have any tips in that regard?
0:26:51.9 SC: So I think the first thing that should happen in that respect is before you even plan an IEP meeting, take the child aside and as a parent, have a heart to heart and a private conversation with them about what it is that they think that they are struggling with. And then, like, if you are having this problem where their grades are not where they should be or where they seem to be having issues in class, I think that the parents should talk with the child about why they think they're having these issues. And then, you know, it also helps if everybody has a good rapport with everyone else. So if the teacher has a good relationship with the student or the teacher has a good relationship with the parent, I think it's important that everybody is... Builds a good rapport so that these meetings can go a lot smoother. If you are working with someone who you know to be reliable and trustworthy and you know they're gonna get the job done, things tend to go a lot easier. And as far as eliminating the intimidation of the student, because I know what you're saying, because I've been in a number of IEP meetings, it can get extremely isolating because, you know, you feel like you're the only student in there.
0:28:20.6 SC: And then of course you're thinking to yourself, "No other student has to go through this. Why am I here? Why are we having this meeting?" I think it's important that the parents coach the students in expressing their issues, maybe through some role play before the meeting starts, talking about how to phrase questions without, you know, offending anybody or without creating tension in the atmosphere.
0:28:46.2 DD: Right. I think that's an excellent idea and I was going to just ask you about that. Before someone prepares for a big talk or speech or something, or if they're in a play, they have a thing called rehearsals. And when I give talks, I don't just put the slides together and just show them and just talking, I rehearse. And I think if a child is... You know what they want and what's on their mind, but sometimes, particularly in a stressful situation, they're kind of... Their mind gets all confused. So what do you think about the idea of, particularly if a parent suspects that someone might be less than articulate in a formal setting, if the parents had a little practice session with them and a session that they could do when they have the meeting? Like say, "Johnny, what is your favorite thing about school? And what is your least favorite thing about school? And where do you get the most nervous?" And most of the time in that situation when they're talking to their parent, they'll answer. And then a teacher or someone can follow the same thing and say this, you know, and ask them a question, but now the ice is broken and they're talking and they're communicating and they're revealing themselves. But the parent kind of breaks it by talking about things they've talked about before.
0:30:28.1 SC: I think that's a good idea. It can really help to have informal talks before the meeting starts sort of to ease the tension a bit, both for the child and for the specialists and the parents and everybody who's there. But it can also help if you have... Like if a child feels like they don't know, they're afraid they're gonna forget something or figure out how to ask someone something, it might be a good idea for them to have notes and bullet points just to keep themselves on track and remind them of what it is they wanna talk about or what it is they wanna ask.
0:31:05.2 DD: So what you're saying is they should probably have a little cheat sheet or something that they can selectively pull out at a critical time to make sure they know. This is what I consider astute patients do when they come to see their doctor. They have their questions written out or they have them in a place where they can bring them up reliably, and that's kind of what you're saying.
0:31:28.6 SC: Exactly. And then everybody needs cheat sheets once in a while.
[music]
0:31:32.6 DD: Right. Yeah. And just to help you. Well, Shelby, this has been extraordinary. You've given us some great insight on some of the fundamentals of IEPC strategies that parents can use in dealing with school boards. And we could probably talk for another hour about this, and we will talk for another hour about this at a later date, but we'd like to thank you very much for your time right now.
0:32:03.1 SC: Absolutely. I'm happy I could be of service.
0:32:06.9 DD: All right. Thank you very much.
0:32:08.1 SC: Yep.
0:32:09.0 DD: We'll see you next time.
0:32:10.7 SC: All right. Sounds good.