Parents’ Perspective: Alissa Williams | Episode #15

Episode 15

Parents’ Perspective: Alissa Williams

Through Our Eyes is again looking at the Parent's Perspective. We speak with Alissa Williams, the mother of Brandon Warner, who was featured in episode #2. 

Alissa outlines the challenges she faced in identifying Brandon's condition early in life and gives a detailed story that can be very helpful for mothers that find themselves in her shoes. 

Alissa's story will take you on a journey. From learning braille to learning calculus, graduating college, and pursuing employment, Alissa and Brandon's story exhibits the possibilities available to the visually impaired community. 

• Transcript

  0:00:09.7 Dr. Patrick Droste: Welcome to Through Our Eyes Pediatric Retinal Research Foundation podcast for April 2023. This is Dr. Patrick Droste. I'm accompanied with the Nicole Giudici and Shelby Craig and Andrea Bennett, all members of our podcast team. And this evening, we have the pleasure of interviewing Alissa Williams, who is the mother of Brandon Warner, who really needs no introduction to our group. I have known Brandon since he was very young, and I've known his mother for about the same amount of time. So what we'll do is, there's an interesting story. I want people to freely ask questions and bring up however the spirit moves them. So I'll start, Alissa, when were you first aware that Brandon had some problems with his vision or his eyes?

  0:01:03.5 Alissa Williams: When he was first born, everything... He was a perfect baby. Everything seemed normal. There was no obvious issue with his eyes at that point. After he was about two weeks old, he developed, they call it nystagmus, which is like a jerking in your eyes where your eyes go to the right and then to the left, and it goes very rapidly, and my understanding is that's when you're trying to find a field of vision, in other words, you can't see clearly. So your eyes kind of move rapidly back and forth. And so when that started, at about two weeks of age, I just took him to the, just the general pediatrician for an assessment. The first avenue they explored was, well, was the delivery of the baby rough? In other words, could that have caused some kind of issue? And when we talked to the OB, he said, no, that everything was pretty normal.

  0:02:05.1 AW: So at that point then the pediatrician referred us to an ophthalmologist, and that was kind of the start of, I'll call it the search for a... What was the issue? We knew something wasn't quite right, but we didn't know what at that point. So, we ended up going to many, many different places. We went... We started with some local places. We went to some hospitals locally. And basically after getting a full workup and being tested for things just beyond, like when he was in the hospital being tested for issues beyond just the eyes, we were released, saying, well, we should just continue to follow it. And so at that point, it was a real puzzle. One of the things that he had was retinal hemorrhaging in his eyes. That was the main issue.

  0:03:06.8 AW: And retinal hemorrhaging is a symptom of shaken baby syndrome. So the hospitals that we were at, you know, to protect the innocent child, had to report it to social services as a possible shaken baby syndrome. The thing that they didn't understand was usually when you have retinal hemorrhaging, you also have brain bleeds, cerebral hemorrhaging, and we weren't shaking Brandon, so there weren't any brain hemorrhages. So it didn't quite add up, but they still wanted to just ensure that the baby was safe. So social services came out and did an interview at our home and an investigation. And at that point, we decided... We knew something was wrong with his eyes because we weren't shaking him. And so we expanded the search a little bit. I'm originally from Washington DC, and so my family was still all down there, and my dad was in the medical field and had some connections.

  0:04:13.0 AW: So we took him to two places down in Washington. We took him to the Wilmer Eye Institute at Johns Hopkins, which I call the Ivory Tower of the eyes, and then we took him, as a second place... Interestingly enough, my parents were in a retinal practice down there with Dr. Garfinkel, and Dr. Garfinkel trained with Dr. Trese at the University of Michigan. So he knew... His response to us was, well, why are you here when you've got the best place to go in your backyard in Michigan? You know, both the Eye Institute at Johns Hopkins and the retinal practice in Washington, DC said, go back to Michigan and go and start it with Dr. Trese. So that was kind of the start of the whole thing with Dr. Trese, and boy, we spent a lot of time over there up until probably Brandon was in like first or second grade. Brandon had multiple laser treatments and he had a gas bubble put in his eye to hold the retina down. There were just a lot of different treatments, and that's kind of how it went until about first or second grade. And then at that point, it was, I guess if you can call it a point where the laser treatment was kind of starting to slow down at that point. So then...

  0:05:46.7 DD: Oh wait. Wait a minute. Let me just interrupt you. It's very, very interesting. Tell me what went through your mind and your husband's mind, your family's mind, when you were being considered as potential non-accidental trauma proponents. I mean, just how did that make you feel? Or did you just blow it off and say, this isn't right, we gotta get another opinion?

  0:06:09.7 AW: It was upsetting at first. I mean, because we wanted a diagnosis and not... I mean, we knew we weren't shaking Brandon. I mean, looking back, when you put it in perspective, it's probably the right thing to do because you are protecting someone who can't protect themselves. But at the time, it was like, what is wrong with his eyes? We just wanna know so that we can try and get it corrected. So that was... It was hard, but in a way it maybe was the best thing because right after the social services people left, I got on the phone and started making appointments with doctors, saying somebody somewhere knows what this is.

  0:06:51.6 DD: Right.

  0:06:52.5 AW: So...

  0:06:52.9 DD: Well, that's a very good point. And I always tell my patients, mothers are always right. And it is a totally fair thing to say that retinal hemorrhages in the early stages of FEVR, which is what Brandon ultimately was diagnosed with, are very similar. And it is appropriate to do, an investigation of the potential non-accidental causes of the hemorrhages. But once that's done, you still have to make the diagnosis. And you did come up with that. And not only that, you trusted and verified, you had more than one source tell you where to go.

  0:07:31.7 AW: Well, it's...

  0:07:32.1 DD: So, well, that was a big thing, and I hope all the parents that are listening here is they probably have one similar story in the saga of their children's trials and tribulations where things didn't seem just right. And when things don't seem just right, they usually aren't. So, that's good. I'm glad you followed it. Let's now go to what you were saying, which is that after two years of age, most of his operations were done by then.

  0:07:58.3 AW: Yeah, I would say, he was pretty much of a regular over there for the first two or three years. The one other thing I wanted to add, Dr. Droste, before we moved on was just to any parents that are listening, that advice from the Ivory Tower and from people in a big city to come back to Michigan and go to either your practice or Dr. Trese's practice, I mean, that says so much for what we've got right here in our backyard. And I can tell you it's an international patient base in both offices. And just as a side note, there's always a waiting line, but it's always worth the wait every minute.

  0:08:44.1 DD: Well, thank you very much for that. Yes, there is a waiting line and we try to make it worthwhile, but it's because everybody gets the attention and the time that they require. And some of 'em require a lot more time than others, especially ones like, for me, like say vitreoretinopathy, retinopathy, prematurity, and non-accidental trauma. Okay. So I recall this young man having some challenges with pain.

  0:09:09.0 AW: Okay. That started... So after the retinal treatments, the lasers, and all that. Then I guess what happened when he was in second or third grade, that's when we shifted over to your practice because he had some type of glaucoma. I guess there are different types, but the eye pressure got super elevated. I can remember coming up to your office and it... You would always do this, you had different tests that you would use to take the pressure off his eyes, and you always had one that worked the best. And we always used those readings and every time I would come, I would pray that those readings were low. But he had a lot of pain when he was about eight. And I will never forget the experience, Memorial Day weekend when we went into Grand Rapids, into the ER, and at St. Mary's and an emergency situation. And Dr. Droste came every single day.

  0:10:14.0 AW: He came in there, he said, you guys need to get this mom a bed. She has just been through the wringer and you just need to really take care of this family. And every day he came on Memorial Day weekend and it was just like, where do you get that from a doctor? There just aren't doctors... And it's really not even a doctor, it's a friend. It's somebody who really cares about your family. And that just, I don't know. We were very, very fortunate. And that was the start, like he said, of a long relationship that we've had both in the operating room all the way out to the outside to the sports days. But it's really important to feel comfortable with whoever your doctor is because you'll be with 'em. And having them as a support person as much as a doctor is very meaningful.

  0:11:08.3 DD: Well, the feeling is mutual, when we started our visually impaired sports days, it was on a wing and a prayer, and it was Patrick, O'Hara Foundation, and Michael Kazmierski and his wife and Marianne Dunn. And we wrote a grant. And the grant was to have some type of activity to have children come out of their comfort zones and do things they've never done before, like beep baseball and like climbing rocks and goalball. And you and Brandon came to every one of our 19 visually impaired sports days and helped me run the baseball, the beep baseball. And you also started a team down in Kalamazoo, Southwest Michigan, which was the only one that we had. And you also did the same in goalball. So that brings us now to some of the activities that Brandon was exposed to. Can you comment on those?

  0:12:04.5 AW: Yeah, he kind of... My theory all along... Well, our family's theory was anything you... We had one child ahead of Brandon, so we had a sighted child. Our theory was, to raise Brandon the same way you would raise a sighted child. So that means if they're in sports, well, he does sports. If they do singing, he does singing. Whatever activities you would do, treat the blind child the same way as a sighted child. So Brandon did track where he used a sighted guide runner, and that gave him a lot of exposure to a lot of kids when he was in school. He did marching band. And that's a word of advice to parents. If your child can't see and they're gonna be in...

  0:12:56.1 AW: You're trying to decide what instrument you should pick, don't pick something that really requires both hands while they're playing. In other words, Brandon played a mellophone. So that only really requires one hand because it's a three-valved instrument, just like a trumpet. So trumpet, mellophone, because what he would do in the marching band is when he was a double, he would use one arm to be a... Arm to arm with another student, and then he would hold the mellophone with his other hand and he could play and march at the same time. If you're trying to do a trombone where you're running a slide back and forth and hold it, it may not be his work, but I'm sure there's some creative way to figure it out. So he did the marching band and then he was in the show choir where they sang and danced.

  0:13:45.3 AW: And then one other thing we did that was a really... An activity that I would recommend for any parents with blind kids. When he was in middle school, we did a goalball day at the gym class. So what it did is it blindfolded all the sighted kids and gave them a different perspective of what Brandon's life was like. In other words, he was the superstar on the goalball court and they were blind and couldn't do anything. So that was a really good day for him to do that. The other thing is these activities like outside of school, so the Sports Day that Dr. Droste had, just to expand on that, it wasn't just learning about those things, but it was learning... You had other kids. All these blind kids are like one in a district and were all spread around the state.

  0:14:42.2 AW: So it was a time when they could interact at the Sports Day. But there are other things, they have a camp at Western Michigan University in the summers, and Opportunities Unlimited for the Blind has camps. I mean this PRRF, this is a way to connect people virtually. I know Camp T has some programs that are run, I think by the Michigan School for the Blind. And then there are also national organizations like the NFB and the AFB, and you don't have to belong to them to attend. But it's more just a time to network and meet other people and that's really important I think.

  0:15:25.4 DD: Nicole, do you have any questions, Nicole Giudici?

  0:15:28.8 Nicole Giudici: I don't. I'm loving this story though.

  0:15:31.6 DD: And how about you, Shelby, does some of this ring a bell for you and your journey with your family?

  0:15:35.5 Shelby Craig: It definitely does. I wasn't in the exact same situation as Brandon, but I know firsthand some of the challenges that come from fighting your way through the education system and trying to get as much exposure as other kids who are sighted. So I definitely understand where you're coming from and I'm really enjoying the story too.

  0:15:58.3 AW: Well, going... Just to expand on another and kind of one other thing for parents who are just starting out. Think of it again back to the sighted child. K through three, your child is learning to read. If your child can't see, if they don't learn braille, they will be illiterate. They will not know how to spell, they won't be able to write something if they don't learn braille. It's really, really important and that they should learn grade one, and grade two because of the difference it... Once you learn grade two, like the word friend in braille is spelled FR and there are tons of shortcuts like that. But you have to also know how to spell it in like if it was in print, you have to know both ways. So K through three, get that foundation of the braille and be literate.

  0:16:57.3 AW: And then once you get to high school, you shouldn't even need really any braille or instruction. By then, you should be shifted over kind of to doing it all on your own. Mobility becomes the primary. And probably we didn't push that enough. There are some really good tools out there right now. Brandon always talks about the iPhone as a backup system. The tracker is made for blind people. And he said it's so superior to the iPhone GPS.

  0:17:33.0 AW: He said to learn to use your cane when you're young but then rely on the GPS because it'll let you go a lot more places. The other thing for high school that is really critical that I think parents should hear, like once your kid is in like ninth grade, okay, a sighted kid's getting a job in the summer, you need to have your child start building a resume because if you don't have anything on your resume when you're in high school, you won't be able to find employment when you graduate.

  0:18:05.3 AW: So Brandon was a dishwasher at a lodge. He worked for a political office as an office... Putting out mailers and things like that. He got into a government program over in Battle Creek where he worked for a big government facility for two summers. He was a counselor at Leader Dog, of course, he did the technology side of the Leader Dog. When they say Leader dog, they have the tracker and leader dog 'cause not everybody wants a dog. Some people want a battery-powered handheld device. And so he would work with that. But after you... You need that employment on your resume or you won't be able to... It's already an uphill climb to get a job after you graduate from either high school or college. But at least having something that shows you've worked and it's a step in the right direction. It normalizes things.

  0:19:08.7 AW: And then the one other thing, if you are going to college, I would highly recommend that they go to that college prep program that the... I called it the commission, but I think it's BSBP now. They sponsor a program. If you're not college-bound, it's probably not as important, but that's a really good program too. So I think that's pretty much the foundation... Like I said, that's what you'd expect a sighted person to do. A sighted kid's gonna work in ninth through 12th grade too.

  0:19:40.9 NG: Can we go back to when he was learning braille real quick?

  0:19:44.1 AW: Sure.

  0:19:45.1 NG: Do you know braille? Did you learn it at the same time he did?

  0:19:48.4 AW: Yeah. I learned it more slowly, I think. And parents can get away with just learning grade one, which grade one is just the alphabet. And then what you can do is you can just, like I said, friend is a shortcut, FR, but you don't have to... There are hundreds of those, they call them contractions or shortcuts. You can get away like your blind child can read grade one because you spell out the whole word so they can read that. And that's just... It's a little bit less, I don't know, overwhelming to just learn the grade one braille.

  0:20:25.5 NG: When you say grade one braille, you're not necessarily, meaning they learn it in grade one, do you?

  0:20:31.7 AW: Right. No. Grade one just means, like, the word friend is F-R-I-E-N-D. Grade two friend is spelled F-R. So grade two is all these shortcuts and grade one is everything spelled out just like the print version. And I guess it kind of does... They call it grade one and grade two. You probably could learn it first and second grade, but I don't know. I looked at it, Hey, I have to be able to write a note to Brandon, Hey, take out the garbage today. And if I can't do it in braille, how is he gonna know to do that? It helps if you can, in the homework area and just... You're helping your sighted children. And there are places where you can learn the braille online or take classes. Western Michigan has classes that teach braille too, that you can sit in and audit and not take for credit. So there are quite a few options, really. Probably the School for the Blind has something too.

  0:21:33.7 NG: Do you still use a lot of braille to communicate, or do you guys use like voice memos or recorded voice messages?

  0:21:43.0 AW: The only time we use braille is if, like, on a gift card at Christmas or his birthday, I'll always braille up what it is. But other than that, I don't write too much in Braille anymore.

  0:21:54.6 DD: Going back to you... Just a minute, I'm sorry. I don't mean to interrupt. Nicole, did you finish there?

  0:22:00.7 NG: Yep, go ahead.

  0:22:02.1 DD: I just find it fascinating. And you just went through about 15 years, in about three minutes. There must have been challenges for you in raising Brandon. I think you already outlined your yardstick, basically setting it up just like he was sighted. But during this time, did you meet with other people that had children with similar challenges and gained from those experiences with interfacing with them either at the Sports Day or at some other events? Could you comment on that?

  0:22:31.8 AW: Yeah, the interaction with the other families, like at the Sports Day, we still get together. There's still a group of the moms that we have dinner with every other month together, and our kids are all 25-30 years old. Because it's so low incidents, blindness, everybody is so spread out that it's really... I felt like I was lucky to have the Sports Day where I would see my friends and the kids could interact with other kids that had the exact same challenges. And it kind of goes that way with the summer camps. Some parents are fearful to send their kids to summer camp because they're worried something might happen. Well, something could happen anywhere, to anybody, sighted or blind. I just think it's really important to... You can't just shelter them because they can't see. But we also had... It was called the Michigan Parents for Visually Impaired Children, and that was a group that we would have like an annual retreat. That group though, it folded, I don't know, in the last couple of years. I think when COVID came, it collapsed. But this PRRF provides at least a virtual connection to other families. And I would think people like... Shelby, I know you're... I think you and Brandon got together in Ann Arbor, right? Or was that...

  0:24:05.1 SC: Yes ma'am, we did. We got together last time. Well, not, I was actually in Michigan about a week ago, but we didn't really have much time to visit this time. But the last time before that, that we went, we actually got to meet Brandon and it was just amazing. I really enjoyed spending time with him. And he's just such a wonderful person.

  0:24:28.4 AW: Well, but you would never have connected with him unless you had this group. And so I think that's why what you guys are doing with this, this is really important because, like I said, there's not a lot of ways to connect, and it does make it easier when you're not the only one with these struggles.

  0:24:51.6 SC: Definitely. Yes.

  0:24:54.6 DD: Alissa, would you have any special advice to parents bringing up visually impaired? You mentioned one time to me that one of the blessings that you had is that Brandon had the same classmates and school environment all the way up, which made it easier for him. And in what ways do you think that would be true?

  0:25:15.0 AW: Well, if you can stay in the same school district, I think it's a big advantage because kids, when they're kindergartners, first and second graders aren't... Have no discrimination, they're all the same. And because they're all the same, they accept you as you are. Any difference you have, it doesn't matter. If you grow up with them, oh, it's just Brandon. They don't look at you really any differently, you're just one of them. And so staying in the same group really helped. Brandon had a fantastic experience in high school. Basically with... He drove a car in the parking lot at the high school with all his buddies telling him whether to turn right or left on the steering wheel. So he had a good time in high school, for sure, but then when he went to college it was... And that's kind of why I say staying in the same district with the kids and they all know you makes a difference because when you start fresh in college, it's... You gotta make your friends. And by that time, unfortunately, people are much more discriminatory.

  0:26:30.9 NG: Very much so. I think this is a good segue for us. We'll kind of finish up the first part of the challenges for Brandon and his family. Does any... Shelby or Nicole, do you have any additional questions or Andrea?

  0:26:44.5 SC: None that I can think of at the moment.

  0:26:48.1 DD: All right, wonderful. Now we'll kind of move on to part two and that is the challenges that you, Alissa and his mom, and Brandon faced in going and picking out a college. Can you talk a little bit about that with us?

  0:27:04.3 AW: Yeah. The college, well, and again, not everybody may want to even go to college. When they are in high school, there might be someone who wants to be a chef or maybe some... You can do anything you want to do. I don't know, I feel like you have to try, when you're blind, finding more of a niche market. Like Brandon always says he wasn't gonna drive a bus, so he decided to go to college and we made the circuit pretty much in Michigan. I think it's important if possible, to go away to school because it's the first step in getting that independence and doing a launch away from home. In other words, I'm all for taking the classes at the community college in the summers to cut the cost down because it is pretty pricey. But if you apply for scholarships, you can get into some colleges and you can afford it. And it's important because that's the first step in living independently. In other words, you don't have to worry about food because it's being prepared for you, but you still have to learn to navigate the campus. And that was probably Brandon's biggest challenge when he was at college.

  0:28:26.9 DD: Where did he go to school? Where was his college?

  0:28:27.0 AW: So he, he went to... He ended up going to Albion College, which is pretty small. He did do the college prep at Western Michigan. I don't know, I think I've known like Lizzie and Michael went up to Alma College. Greg Botting went to... Some of his peers, went to Alma. And then there's a larger population of students who have gone to Western. I'm glad that he picked Albion because it forced him to be independent. If he had gone to Western, what happens at Western is you have a lot more social, because there's a large group of visually impaired students at Western. So you kind of have to weigh it. But when you get out into the real world, you're once again, all by yourself, on your own. There's not a big group of blind or visually impaired people to hang around with.

  0:29:24.1 AW: So I guess from that perspective, I like the smaller school versus Western, but it's different for everybody. So there is no real right or wrong answer. But he went to Albion for the four years, and then once he graduated, he started... He had an economics degree. He started looking for employment and he had a lot of interviews. We put up something on LinkedIn. And initially, we did not say that he was blind. We put all his job experiences that I outlined earlier. We didn't put that he was blind, and he got quite a few interviews and then quite a few rejections. And so then, he worded a phrase out there on LinkedIn that said he used his disability to his advantage. It's probably still out there. And at that point then, he didn't get as many interviews, but then people at least were aware that he was visually impaired coming into the interview.

  0:30:30.7 AW: So time went on and he wasn't able to really find anything. So that's when he decided that he should go back and get his master's degree. And he got that at Western Michigan. Now, while he was at Western, I don't know, he was maybe four or five months from graduating, he got the offer from U of M. So he worked out, negotiated a strategy with Western that allowed him to take the position at U of M and complete his master's degree remotely. So that's kind of how that all went. But again, that gap in the resume, you wanna minimize that. You don't wanna have a big gap of time where you're not doing something. And if you can't find a job that pays, volunteer, there are always volunteer opportunities. And then that's still something on the resume.

  0:31:23.9 NG: I think this is a fantastic point that you make, and I'm not minimizing the struggles at all, but I think one of the challenges that may present themselves is where are the challenges, the normal that everybody goes through, and where does that stop versus the challenges that visually impaired young adults are facing? Because some of these are challenges that everybody faces, and the advice that you just gave is spot on for everybody, really. And I imagine, I don't know for sure because obviously, I have sight, but at some point, you have to wonder like, what is it about me? Is it my sight that's causing me? And it could get really frustrating when this is a time where you're just like everybody else too. But it seems really honed in on your disability.

  0:32:07.6 AW: Well, one thing you can do right now that's an advantage is a lot of the places you go to get employment right now are doing virtual interviews instead of having you come in. Which, if you're doing it virtually, you shouldn't have... Blind or sighted, there's no issue really. You can prep the same and it's really a fairer way to hire somebody. The mobility, getting into the place of employment is the big challenge because you're going into someplace that you've never been before. If your GPS doesn't work inside the building, then you're falling back dependent on the cane or a dog or however, you navigate.

  0:32:51.5 SC: I will say that there are certain challenges that come from being blind while living in a sighted world. Certainly, anything has its own challenges, but there are certain things that sighted people may not think about when trying to accommodate someone who's blind. That's not to say that they don't care about accessibility, it's just not something that they think about or a situation they would normally find themselves in. For instance, a few weeks ago, I was doing a job that... I was talking to people about trying to get some advice to get a job. And the two people I was talking to said, well, maybe you should worry about getting the job first and then worry about transportation later. But the thing is, I live in a very rural area or suburban area. So it can be difficult when you're not somewhere where there's access to any sort of public transit. And by the time you pay for actually getting to work and that sort of thing, it usually costs a lot more than it... You would almost be paying your entire salary just to get to and from work. So I feel like there are certain challenges associated with it, but if people are willing to be accommodating, then certainly almost any challenge can be overcome.

  0:34:15.4 DD: I think you bring up a key point, both Nicole and Shelby, and Alissa. And that is, regardless of whether you're sighted or visually challenged or severely visually impaired, there's an old saying for hockey players when we teach the young kids to play hockey, and that is regardless of what's going on on the ice, you always have to keep your feet moving. You always have to keep your feet moving. If not, you'll be ineffective at the best and you'll get smoked at the worst. So I always felt that was an important thing to teach the hockey players, and it's a good life lesson. And that gets back to your concept of gap, Alissa. You wanna keep those gaps to a minimum because they show lack of perseverance and interest. To me, one of the key points that you mentioned is if you can't get a job, you can certainly volunteer, and frequently volunteering will lead to a job because you'll impress people and meet people, and so on and so forth. So summary there is to keep your feet moving, always be smiling and positive and things will work out well.

  0:35:25.8 AW: And working in a political office too.

  0:35:29.8 DD: Yeah, that's very good.

  0:35:30.9 AW: Because they're taking a benefit from having employed a disability. They're gonna have their picture taken with you standing next to 'em with a white cane. I can tell you for sure that you can get into a political office because they have many, many mailers that need to be folded and stapled. I think that's a prime opportunity because they're everywhere. There are offices everywhere, so you can find something and volunteer there. I don't know, Brandon did quite a bit of volunteering for different places, but I just can't emphasize enough about getting that work. And then the other thing he always said to me, he says, "Mom, I always asked myself if I was coming to corporate America, would you hire me for that position or the sighted person?" And he's like, realistically, I probably can't maybe be an engineer, an aerospace engineer, but what can I do and be successful at? And so he's gone the technology route and found success in that area. You just always have to find that niche that fits what you want, but something that you like to do also.

  0:36:53.5 DD: Can you tell us a little about Brandon's interest in mathematics and teaching mathematics to visually impaired students?

  0:37:00.0 AW: He says that the sighted world teaches it the wrong way. He says we teach it visually. And he says, it's not visual at all. It's all conceptual. And he said that's the problem with the way it's taught at school. And I don't know, he had a gift to be able to get up through Calculus two. I couldn't even get through calculus one. He just, I don't know, it just, that's his... He has that makeup where it comes to him. I don't know why, it's the same thing with technology. He just is wired that way that the technology and the math comes easily. In science, in college, he had to pick chemistry, bio, or physics, and he said, oh, that's easy. I'm taking physics. And I'm like, oh my gosh, I would never take physics. But it was all math.

  0:37:58.6 DD: Well, he would come to the Sports Day with his braille books on mathematics. And I remember he would talk to a lot of kids about it, and I was always impressed. And then of course, one thing led to another, and he has this tremendous interest in computers, in computer sciences, and so on. That's a gift. That's one of his gifts.

  0:38:21.6 NG: I'm really interested in hearing a different perspective. I think you've really given a great recap of the struggles that Brandon went through, but through every stage of his life where he was going through struggles, what were your concerns for him as his mom or the struggles that you were facing at the same time he was?

  0:38:41.7 AW: Well, the main, the biggest struggle obviously was the medical side of it. We had a rough time. Dr. Droste will tell you it was bad with that pain when he was in second and third grade. He missed a lot of school because of his eyes and that was a critical time in learning stuff. And he had to be pulled out a lot because it lasted for a while before Dr. Droste got it controlled. And that was probably the hardest thing in the whole life cycle to watch. That, and then it gets very discouraging to get a lot of job rejections when you know why it's happening. Those were the two probably toughest things I would say.

  0:39:27.8 NG: From the little bit that I know of Brandon, he seems pretty fearless. He would've scared me to death when he tells me about walking through the drive-throughs and he's not afraid of anything.

  0:39:42.1 DD: Oh, he's a pretty special human being, and we're lucky to have him as part of our PRRF. And we're very lucky to have you, Alissa, and thank you for spending this past hour with us tonight and giving insights that I think will be heard around the world. So thank you very much. And we hope we'll use this opportunity to get some of the friends that you associate with and have maybe a panel discussion like you talked about. Could you outline that a little bit?

  0:40:09.8 AW: Yeah. What I would like to do, I think it would be a good, a podcast or future idea for your group is, I still get together with some some of the moms. We have one that's in Florida, and Dr. Droste knows all these ladies and all their kids because we're just all like one big family, I guess. There are about five of us that meet and all of our kids are a little bit different. Some of 'em, he knows everybody's doing something different. So I think to get the moms together, you'd hear some different perspectives too. Maybe have a question-and-answer thing for the different moms and see. I think it would be helpful.

  0:40:53.5 NG: Okay. How did you guys all network and come together? What's the common denominator for you?

  0:40:58.5 DD: Part of it was Sports Day from Dr. Droste. You have no idea of the benefit that that created. When everybody is so spread around and you have this one event where everybody looks forward to it. It was... Brandon loved it. Everybody loved it because we all knew each other. It was once a year when you knew you would see everybody, all your friends, and the parents would all hang out, the kids would all hang out. So that was the one. And then basically some of these other, like there was a group of Michigan parents of visually impaired children. We had a group, but that's folded. But I know there are a few other things. Like there are summer camps that are out there and the school for the blind has some stuff, but getting together with other people is important, I think. It tips...

  0:41:52.0 DD: It's very important that parents get to interface. They can talk about their educational programs in their district versus those in other districts. Just like anything else, some school districts seem to have stronger programs for visually impaired than others do. And getting together to discuss these things, I remember long after the Sports Day was done that you would be out there sitting in rooms and classrooms just caucusing about how to advocate for your kids.

  0:42:17.6 DD: So now we are kind of moving on to the next thing is we're still advocating for 'em, but we want 'em to become, we want 'em to come fulfilled. We want 'em to earn a salary, good enough to pay a mortgage. We want 'em to contribute to society in a way they can. And so that's kind of our new Sports Day venue. And we'd like to thank you very much for participating with us tonight. On behalf of the PRRF and Through Our Eyes podcast. We hope to see you again soon.

  0:42:48.6 DD: Make sure to like and follow our Facebook, Instagram, and TikTok and let us know whether you have any questions or have a topic you would like us to cover. We have tremendous things planned and we hope you would tune in again for our next podcast. This is Dr. Droste, saying Night to all of you on behalf of our staff, the PRRF, thank you.