EPISODE SUMMARY
Julie Burch is an accomplished author (pen name: Juliet Brilee) and stepmother to Josh, who was born blind. Now 48 years old, he lives independently with his seeing-eye dog, Lou. In this episode, Julie shares what it was like to raise a blind child. She introduces us to how she helped Josh spatially map his environment, and talks about how the brain's map differs for people who have vision versus people with no vision. Julie is a mindfulness coach, and she emphasizes the importance of patience, embracing "failure," using tough love to support independence, and enhancing the senses through mindful practice.
In the next episode, Dr. Blueweiss interviews Josh, who shares his perspective on life in a world built by sighted people.
FIND AND FOLLOW JULIE
Julie's Mindfulness Art Facebook Page
https://www.facebook.com/julieburch4art
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https://www.facebook.com/Jbrileeauthor
Julie's Author Website
https://julietbrilee.com/
Subscribe to Julie's mailing list for information about upcoming books, nature, recipes, and life with Josh.
[00:00:00] Carole Blueweiss: Welcome to Wisdom Shared, where parents are the experts and connection inspires change. I am your host, Carole Blueweiss. Today, my special guest is Julie Burch. I met Julie in a Toastmaster's club and I learned that she's an art teacher, an author, and a mindfulness coach. Julie tells me how she helped to raise her two stepsons, Josh and Shay.
[00:00:29] Josh was born blind and it was Julie's creativity, mindfulness training, and intuition that played a huge role in raising Josh to be the independent 48-year-old man he is today.
[00:00:42] Julie Burch: Someday kiddo, you're gonna live on your own and you need to know how to do things. At risk of being a mean stepmother, I was not going to treat him like a helpless infant.
[00:00:54] Carole Blueweiss: There's so much Julie shares with us that is truly inspiring, sometimes funny, and overall quite amazing. I don't want to give it away. I do want all my listeners to keep in mind that never seeing the world versus losing one's sight later in life are two very different conditions and affect the brain in different ways.
[00:01:14] Let's just say, if I were to close my eyes, I still would not be replicating anything close to what Josh experiences, because he has never seen. Josh will speak more about this in his interview, coming up in a few weeks. Julie points out that individuals who are blind are not born with superpowers like extraordinary hearing or extra sensory touch.
[00:01:37] They must develop these senses by focusing, practicing, and paying attention. Reflecting on the conversation with Julie, I realized how I take my ability to make sense of my world through my eyes and the spatial orientation that my brain created for me for granted. Julie and Josh give us a sneak peek on how they managed to adapt and grow as people and how they navigated the unknowns.
[00:02:01] Let's listen to what Julie has to say.
[00:02:09] Welcome to Wisdom Shared, Julie.
[00:02:11] Julie Burch: It's delightful to be here.
[00:02:13] Carole Blueweiss: Tell us about your children.
[00:02:15] Julie Burch: My husband came as a package deal. He came with two boys and those two boys, I partnered with my husband to raise. There was a biological mother and there still is. When I got together with my husband, joshua was one and the other boy was four.
[00:02:36] And Shay was very spirited. Josh was very withdrawn as a one-year-old blind child, totally blind. His optic nerves never developed. It was quite a learning curve to parent a blind child, but frankly, the more challenging of the two kids growing up was his brother. A lot of times in a family where there's someone who has a disability, the other child winds up needing attention or engaging in attention-seeking behaviors, because they feel like this other kid is getting all the attention.
[00:03:20] That said, he also had an oppositional personality and we wound up going to counseling for that. Originally, family counseling because of his brother's issues. When Josh was little, he was just adorable, little blonde haired kid. And back in those days, we would take the boys to video arcades and he was so cute and he was blind and people would just come up and give him tokens.
[00:03:52] But you can imagine that went over really well with his brother. We'd have family sing alongs with the guitar. We really tried to incorporate music into our lives because of blindness. He really opened our eyes and our minds to increased possibilities because we were always looking for ways to adapt experiences so that he could have a richer and more normal experience of life.
[00:04:17] Carole Blueweiss: I'm trying to visualize the arcade scene. How did people know he was blind?
[00:04:24] Julie Burch: His eyes, were kind of rolling around in his head. It's common among some blind people to have eyes that don't look quite normal. Like you and I are focusing on one particular place, but Josh's eyes would kind of dance around. They were not focused. He might've had a cane too. He didn't get a guide dog until he was an adult. It would've been clear that he was not the same as his brother. He was not running around the arcade, trying this, trying that. He was requiring a lot of assistance and guidance. And sometimes people would ask.
[00:05:07] Carole Blueweiss: And the other visual that I get the pinball wizard.
[00:05:11] Julie Burch: Yes .
[00:05:12] Carole Blueweiss: Do people mention that to you or the way you just talked about an arcade and a blind child going to an arcade and having a lot of fun.
[00:05:19] Julie Burch: I think that for other people, that's what was in their mind. I don't think Josh was ever anything you could call a pinball wizard. He liked the sounds of the games. I'm not sure he even understood what was happening in there. All his experience would've been the auditory portion. He wouldn't...the thing that he didn't have, and in that movie or that song, Tommy deaf, dumb and blind boy, that when you are, when you come into the world without vision, and if you think about how many things you have a mental map, for how many things you visualize. He did not have a mental map. And so he would not have understood what was in that machine or what was going on in that machine. Actually, what I read was in the first few years of life, a lot of kids who are blind, they don't understand that they're even different.
[00:06:14] So many things that we have concepts for, he did not have concepts for. And the lack of a mental map makes it especially hard for him to get from point A to point B. It's linear to him. So space is more of a linear experience. We experience time in a linear way because it's just one moment after next.
[00:06:36] Well, in order to have a mental map, you kind of have to have a spatial orientation to the world. If a person has vision and they lose it, then they have had the spatial orientation to the world, and they can perhaps understand where things are in respect to one another. But Josh never had that. He had to learn it. And I'm not sure if it's ever going to be anything that's similar to what we have.
[00:07:07] Carole Blueweiss: When you say mental map, as you kept talking, I was understanding more about what you're referring to, but would you agree he had some kind of a mental map of his own? It just might not have been perhaps the one, you know, you spoke of because he still had an imagination, right?
[00:07:25] Julie Burch: He had an imagination. But if I say the word map, if I say that to anyone, chances are that they see something that has length and width. So there's a lay of the land. And I can't really comment on what his lay of the land is. But I think that it's far different than what we imagine. There is a common misconception that people who are blind automatically have better orientation to sound and tactile, to smell.
[00:08:04] There's this automatic assumption that the other senses just ratchet up to accommodate. But the fact of the matter is, as far as I can tell, that has to be taught. The parts of the brain that would be involved in that would be honed through practice. And I have tried to teach Josh certain things. I've taken him to a park where there's a highway nearby and tried to teach him how to navigate, but keeping the orientation of the sound in a particular place, and also keeping focus on different tactile experiences as he walks. And having some goal in mind of where he's going to reach on that journey is a lot of juggling in the mind. Eventually one of his mobility teachers said, I don't think that park's the place for you to even go alone. That was disappointing to me.
[00:09:07] I'm like, well, just keep that on your right. But on his direct right versus behind him to the right is a little bit subtle. And then the guide dog just took him into the road. I'm like where in the heck is he?
[00:09:25] Carole Blueweiss: Oh, no.
[00:09:26] Julie Burch: I drove down to the other end of the park waiting for him. And finally I got back in the car and I went looking for him. But the whole mental map idea is one that if a person's had vision, they are going to have that mental map. And if a person has not had vision, they're gonna have to learn other strategies.
[00:09:43] Carole Blueweiss: You mentioned somebody, you didn't say coach.
[00:09:45] Julie Burch: He had a mobility teacher.
[00:09:46] Carole Blueweiss: Mobility teacher, I've never heard that.
[00:09:48] Julie Burch: Yes. It's called orientation and mobility. And these are specialists who help blind people figure out where things are and how to get from point A to point B in any given situation. So even now when he moves to a new location or if he starts a new job, there will be a special person assigned from the Division of Blind Services to help him orient himself.
[00:10:15] There's that mental map thing, where his strategies are different than ours. We're going to have a layout in our head that we can call up and reflect on later. He's going to have landmarks. When he moved in with us for a while a couple years ago, he'd been with us and moved out, but he moved in again. He didn't have the layout of our new house.
[00:10:37] It's good enough when he visits, but if he's gonna get around by himself. So I oriented him to the house and what blind people do is called trailing. So he would hold his hand out and he would touch something as he traversed. So we, you know, you trail out of this room and then you expect to find this piece of furniture and you trail along this piece of furniture, then you expect to find this piece of furniture and then you come to this opening. But if you take three steps and go left, you'll be at the hall that leads to the restroom. It's linear. That's what I mean when I said it's a linear experience.
[00:11:11] Carole Blueweiss: Would he use a stick?
[00:11:13] Julie Burch: No, not at home. The thing that he would do at home is he would trail. And the thing that would cause maybe the most conflict for us would be that he wouldn't trail. And he would be in the middle of the room. And when he's standing in the middle of a room, he doesn't know where he is, unless he hears something that tells him where he. And I would say, what are you doing out there in the middle of space? Because space is disorienting for a person who's blind, unless they really know where they are.
[00:11:49] If they're not touching something or listening to a very loud landmark, then they are lost in space. Josh also wears hearing aids. Before he got the hearing aids, he just couldn't hear very well. Now his level of hearing loss is not so great that it's a huge issue, but I anticipate as he ages, it might become worse.
[00:12:15] The hearing aids were provided by a vocational rehab when they were getting him a job. If he had not been involved with vocational rehab, no organization that we know of would've provided them. And they're very expensive.
[00:12:27] Carole Blueweiss: Did you know from childhood that he had some hearing loss?
[00:12:31] Julie Burch: I don't know when it started. It wasn't apparent when he was a kid. I bring that up because again, he has to learn to tune into sound. And of course that takes a tremendous amount of focus and it takes sensory clarity. I'm a trained mindfulness coach. And ever since I got trained, I have been training Josh in mindfulness meditation.
[00:12:56] Carole Blueweiss: Wow.
[00:12:57] Julie Burch: And those are two of those three mindfulness skills. And he has embraced mindfulness meditation, and he comes to the Thursday night mindfulness group that I lead. And he practices. I have taught it to him so that he can cultivate that sensory clarity, so that he can focus in on where sounds are coming from.
[00:13:22] Carole Blueweiss: If there was ever a good use for mindfulness, it would be right there.
[00:13:25] Julie Burch: Absolutely. Absolutely.
[00:13:27] Carole Blueweiss: Is mindfulness in your experience at all incorporated into special education? In his case, was it?
[00:13:37] Julie Burch: No, not that I know of. In his experience growing up, he was pulled out for a resource room where he mostly worked on braille skills. We had to work on a kid who's going to be relying a lot on the tactile sense, he found certain textures to be problematic. We would have tactile experience activities at home. So we would be finger painting, although to him, he wasn't making anything, but we would have play with pudding or with shaving cream.
[00:14:19] I would, make these big bins full of dried beans of different sizes and hide things in there. There were always little tactile games and activities at home to help develop his tactile skills. And then at school, of course, he was expected to do the work other kids did. And
[00:14:38] Carole Blueweiss: He was in an integrated school, would you call it that?
[00:14:42] Julie Burch: Yes. He went to the school, the regular elementary school, and he was pulled out for vision resource. So mostly in vision resource, they were reading to him and helping him learn braille. And braille is a tough thing. It is a tough thing for a person to learn. For one thing, doing your assignments in braille is so much more cumbersome than doing a regular assignment. If you're doing a long division problem in braille, it's gonna take maybe a sheet of paper 12 by 12 to do one problem. Whereas we can glance at it, he would have to go back and feel every step of it. It was really hard for him.
[00:15:24] It was hard for us too. We both learned beginning braille. I wound up embracing braille. I would take books that I thought he might enjoy, and I would braille the whole darn book so that he could read it on his own.
[00:15:38] Carole Blueweiss: How do you do that?
[00:15:40] Julie Burch: There's a device called a braille writer and looks like just a big, heavy metallic device. Giant, weighs about 10 pounds. And it has six keys and a space key. And a braille cell has six different dots. You learn to press the keys for combinations of dots. There were volunteers in the local area who would braille books for him as well. So he had a little braille library. It wasn't huge. There was also a lending library organization where we could borrow braille books and return them.
[00:16:11] Nowadays, I think most kids are gonna rely on audio books, but back then it was braille. There weren't so many audio books. That was a new thing. So learning braille was a real toughie and it was hard helping him with his homework because I couldn't just glance at it. I'd have to have him read it to me, or I would have to try and make it out myself.
[00:16:36] Sighted people read braille by sight, not by tactile. So I would have to look at it and see if I could figure it out. But I wouldn't necessarily know everything because there's braille and then there's another level of braille that's like shorthand where the symbols are a little different. And as he went on in school, he graduated to that kind of braille, which was harder for me to help him with. I will never forget what we call the Julius Caesar incident.
[00:17:01] I was trying to make something in the oven for my husband and I. He is trying to read and answer questions and my book was not lining up with his experience with what he was reading. It was challenging work, but also the braille wasn't making any sense and I'm trying to help him and cook at the same time.
[00:17:23] Well, that was probably a really good example of why multitasking isn't a great thing to do. I was cooking Tostito's in the oven. And they caught on fire and I whip 'em out of the oven and they fall on the floor and I'm beating them out with a towel. And Josh is at the counter going, what the world is going on here? I'm like, fire! It was so funny, a kind of a metaphor for the mood I was getting into because I was so frustrated with his braille. And then finally we figured out he didn't have any of the margin notes or any of the other notes that they put in a play for when you're reading it in a textbook, there was all these little additional notes that weren't actually the lines of the play. Well, I can't say that we ever got that homework done.
[00:18:21] You were asking about his experience with teachers growing up and did I feel like they met his needs. And I would say that I have two levels of perspective here, the perspective of being the parent and the perspective of being a teacher and having a certain amount of empathy for what teachers are dealing with.
[00:18:42] Joshua had a variety of teachers. There's the ESE or the exceptional student education teachers is what we called it then. I don't know if they're calling it something different now. And we have the classroom teachers. I imagine that when a classroom teacher was told she was getting a totally blind kid in her class, they were probably a little bit stressed, to put it mildly.
[00:19:11] Some of them really embraced the opportunity to have him in their class and tried to vary the lessons to meet his needs. But let's face it, he couldn't follow along any of the worksheets, any of the readings. He couldn't do any of that unless it was prepared for him ahead of time. That meant absolute structure for the teacher, because she had to be able to give to volunteers the material that she was going to use ahead of time.
[00:19:38] And I'm sure that there were moments where that didn't happen in a timely way. You're relying on volunteers mostly to get it all brailed and prepared. It's really amazing how well it did go. There were a couple other blind kids who came into the school system while Josh was in it. And those kids sometimes had to share materials with him.
[00:20:02] And I'm talking about to the point where it's two kids at one desk on one braille book. So that was tricky. I think that they did the best they could. There was an art teacher who refused to have him in her class because she said it's a visual arts program. Some of his teachers were fabulous and some of his teachers were not as helpful as they could have been, partially because they wanted so much to see him succeed that they gave him too much of the answers and helped him maybe a little too much. So that got in the way of his embracing and becoming more independent with material. We were afraid that middle school would be too hard for him.
[00:20:51] Kids who are challenged with a huge issue, like blindness wind up a little emotionally and socially behind some of the other kids. And he didn't have the ability to stand up for himself as much as the other kids. That's probably one of the reasons why we eventually got him into karate so he would find his own power.
[00:21:17] And he was like from the get go rather passive. You know, when you think about how much kids run around and explore things, and if you're blind, you're not necessarily doing that. So he got very comfortable being a little more reticent. So often we get him into an activity or he'd be in a situation either on the playground or wherever and he'd be left on the sidelines because the other kids were running and playing and tumbling and doing what they do. And they didn't accommodate him. Most kids are not naturally real altruistic in that way, where they're gonna go and seek the kid who can't do it and bring them in and loop them in and make them a part of it. I didn't find that to be true in any situation that we ever encountered.
[00:22:05] I wanted him to have a good experience. I wound up becoming a a Cub Scout leader so that I could ensure that he would. And I made sure we had activities where he could do it, but going back to school, when he was going into middle school, we thought, oh, I don't know if middle school will work for him. It's a tough place. Kids can be rough at that age level. So we put him at the residential school for the blind for a year. We wound up dropping in a few times, unannounced. This is no reflection on the school of the blind right now, because I don't know what it's like right now. But at that point in time, we weren't real impressed.
[00:22:49] I can just remember walking up to one of the classrooms that he was in. And the teacher was at their desk, reading the newspaper and the kids were like coloring with a crayon on a screen. That could have been an isolated incident. We thought, if we're gonna have to monitor the situation this closely, we might as well put him back in the public schools in our own town where it's easier to monitor.
[00:23:11] Which is what we did. But I'll tell you what, it was an ongoing thing. And we were learning as much as he was. We were learning how do we help him learn this information? We were learning how do we parent him effectively? And we were learning how in the world are we gonna help him with his homework? I remember once he was doing his science homework and when we were reading the passage together, it became evident that he had no clue what rust was.
[00:23:43] Because you take it for granted. Oh, that's rust on that. Kids see it. And then because they saw it, they might feel it. Josh had no experience with rust. So we had to go outside and find some rust so he could feel it. And then he would understand that rust is this, you know, process where this is degrading and this is what it feels like. Unfortunately, we were able to find it on our car. Anyway, it was a challenge.
[00:24:07] Carole Blueweiss: It's just so interesting that there's just so many challenges that kids can have. And there's only so many specialized schools and it's not like you could choose between three schools that worked with children that were blind. You had that one school that unfortunately wasn't up to par.
[00:24:26] Julie Burch: That was a residential school, but what they would do in our town, there would be a magnet school where we have the program for the visually impaired. So it's my experience that different schools will specialize in different exceptionalities.
[00:24:40] And that way they can put the resources in one place and meet the needs of the children better. And you can't count on them to go to your neighborhood school. He didn't ever go to our neighborhood school because the school where the resources were wasn't in our neighborhood.
[00:24:54] Carole Blueweiss: Oh.
[00:24:55] Julie Burch: But that's okay. It was across town. We could drive over there. I was not unhappy with the school. And frankly, as a teacher, I can say that you often find yourself in a position of having a lot of kids with let's face it, every kid is unique, but having a lot of kids with different needs and can you meet all of their needs? That's the challenge.
[00:25:19] Can you meet all of their needs and still meet all of the responsibilities and guidelines and objectives placed on you as a teacher? It was a situation where we had to remain involved and we had to keep, our eye on it to see where was he needing help and how can he keep up? And he had some really great teachers.
[00:25:40] One teacher in high school taught English through lyrics of songs and especially the Beatles. He became a huge Beatles fan at that point, huge Beatles fan. We found some fabulous teachers who really learned how to teach a blind person music. Unfortunately, when all is said and done, his favorite instrument is the radio or Spotify.
[00:26:05] If we thought that him being blind would give him additional privileges at a concert, we would totally play that card. And he got to meet Doc Watson. He was a country folk singer from North Carolina. And we just had a great time taking him and exposing him to different musicians, writing to them on his behalf, and then they would send him things.
[00:26:29] And that would be pretty cool because since he wasn't having the experience that a lot of kids have in life, what other experiences could we get him to make up for that?
[00:26:40] Carole Blueweiss: Sure.
[00:26:41] Julie Burch: That was kind of our rationale.
[00:26:42] Carole Blueweiss: And all kids growing up have fluctuations of self-esteem. How was his in terms of comparing himself to others?
[00:26:51] Julie Burch: He really had to work on assertiveness skills. Because for anyone who has a disability, the world is not going to come rushing to meet your needs. You have to learn to be assertive and ask for what you want. And that's an ongoing challenge for Josh to learn to be, you know, assertive in any situation. And I have to say I'm really proud of how he has taken that challenge to be assertive, to get what he wants, to ask for what he wants, to not back down.
[00:27:18] But I think that that did not come naturally to him as a child, whereas his brother was probably way high on that assertiveness scale. And maybe that was part of the issue. His brother was pretty domineering and Joshua was pretty passive.
[00:27:35] Carole Blueweiss: And what was their relationship with each other?
[00:27:39] Julie Burch: Growing up, of course, I can't completely speak to it because I'm not in his brother's skin and also his brother's deceased now, so we can't ask him, but there was a sense of his brother wanting to protect him. But then there was this other sense of his brother feeling in great competition with him. Josh had special meetings, special teachers, people looked at him and said, oh, poor blind kid.
[00:28:07] And wanted to give him things. His brother was able to run and play and have activities with the cousins and football and different things that Josh couldn't do and didn't participate in, but I'm not sure it really registered with his brother. Their life experiences were so different. They were not close as they grew older.
[00:28:28] Carole Blueweiss: How was that for you in the sense that you had two children that were so different? How did you manage that?
[00:28:38] Julie Burch: That was very difficult to manage, actually. We went to family counseling, we worked on whatever system we could put in place within our household to make sure everybody was being responsible for what they needed to be responsible for. It was a constant challenge, honestly.
[00:28:59] Carole Blueweiss: And were you and your husband on the same page in terms of strategy and how to raise both your children?
[00:29:10] Julie Burch: Now, I am the step parent. So I always thought that I was not to take the lead and yet that's tricky. I was parenting them, but I always defaulted to what he wanted to do. But he and I were usually on the same page. That was helpful. Because Josh's brother had his own issues and anyone who's a stepparent can tell you that you'll see more clearly the issues of a kid than their biological parent.
[00:29:44] Carole Blueweiss: Yeah.
[00:29:46] Julie Burch: It's rough. When you don't agree on things or when you see things clearly and somebody else doesn't want to see them. I think it was hard on Larry to be the father of a blind son, because he was an active guy and he and Shay, they would go out and do activities. They'd play Frisbee or toss the football or whatever. And Josh couldn't do those. It wasn't something that interested him that much. But he couldn't do that with them. I wound up teaching him things in the house.
[00:30:24] We had behavior modification systems, little rewards. And I'm not sure if it's different how they would do it now, but things like, this is gonna sound bizarre, I would get out his clothes for him or I'd have his clothes organized. In the morning, he was to dress himself. Okay. But he would come out rather late for breakfast and his clothes would be on inside out.
[00:30:54] I'm like how in the dickens did that happen? I mean, they weren't inside out to start with, and can you feel that the pockets are on the outside now? I mean, wasn't it kind hard to zip it up? So things like that. Motivating him to care about things that we care about was tough. He didn't see them, it didn't matter to him. So getting him to value things that we typically value, because we can see was a challenge.
[00:31:29] Carole Blueweiss: And how did you deal with the fact that his clothes were inside out? Did you let him go to school that way?
[00:31:34] Julie Burch: Heavens no. No, go change. Go change how you have those pants on.
[00:31:42] Carole Blueweiss: And did you help him or did you let him figure that out?
[00:31:47] Julie Burch: I on purpose made him change his own clothes. Yes. I didn't. I would point out that they were inside out because he wasn't tuned into that. It didn't matter to him. I was tough. I'm gonna say that. And when I say tough, I had a hands off approach. It's not easy to do that, to let somebody figure it out, bumble along, fix it on their own when it would be so much faster for me to do it for him. That was hard to do. When Joshua was a preschooler, he was not motivated to be independent. And I wanted him to learn to be independent. I thought, someday kiddo, you're gonna live on your own and you need to know how to do things. So right from the start, right from when he was like a little kid, you open that door, you can turn the knob. Open the door and we'll go in.
[00:32:47] I was always scouting around for what can he do? And then asking him to do it for himself. I call that a tough approach because it was meant to instill independence in him.
[00:33:03] Carole Blueweiss: Tough love.
[00:33:04] Julie Burch: Tough love, yeah. Tough love. I mean, it's how easy it would it be for me to help him change his clothes? How easy would it be for me to open that door or to do this or that for him, it would've always been easier and faster. And so it took a tremendous amount of patience, but also I just dug in that he was going to be independent. Even though it didn't always make me the most popular person at risk of being a mean stepmother, but I was not going to treat him like a helpless infant. I was going to encourage him to function at his age level to do things that he could do, to learn how to do things.
[00:33:43] You will carry your plate to the sink after you eat your meal. Do you know how much silverware we lost in the garbage ? You know, and if I caught it, that was great, but it was important. He lives on his own now. He lives on his own. He cooks on his own. He cleans on his own. Thank goodness he has a house cleaner once a month because blind people cannot see everything that needs to be cleaned, but he does it all on his own.
[00:34:11] Carole Blueweiss: That's testament to you. I meet many parents and for no fault of their own, because we all just love our children, whether they have special needs or not, how much we do for our children. Oftentimes I find myself coaching the parents to let them figure things out more for themselves. It might take longer, but they're gonna learn and that learning is gonna help them develop. And it sounds like you knew that intuitively or from your training. It's a great example of how now Josh can manage on his own.
[00:34:45] Julie Burch: I think one of the challenges that he has as an adult would be the girlfriends that he has will be inclined to wanna do for him the way a parent might have when he was growing up. I think as women, we can be nurturers. And we can want to do for our men. We are constantly encouraging him to not allow that to happen because he will not benefit in the long run if he lets anybody take care of him. And it's one thing to take care of someone who is fully able to take care of things themselves.
[00:35:23] And most of the time does, but then you're just like the icing on the cake. Oh, let me do this for you, dear. But it's a completely different thing if you're blind and you're with someone a lot of the time, and they're just taking over and taking over things you could be doing for yourself. So I think that's his challenge now, but that was always his challenge growing up, everybody in his life pretty much, besides me, wanted to do for him. He had grandparents, he had aunts, and he had other people in his life who just wanted to do for him. And it's logical. You see someone, your heart goes out to them and you want to be kind to them. And how do you show kindness? You can show it by food or service or kind words, whatever. But when you show kindness to someone in such a way that it is disempowering in the long run, the person you're being kind to, it's not kindness.
[00:36:20] Carole Blueweiss: It's such a paradox and it's subtle to find that balance. What have you learned from Josh? I mean, you've obviously learned many things, but just what comes to mind?
[00:36:38] Julie Burch: I've learned how to be patient. I have learned so much about human nature and seen, experienced, heard things that I never would've if it weren't for him. I continue to do so even now, when he shares with me experiences he's having. He opened the world to me in a way that I never would've known, so many experiences I've had, I wouldn't have had without him. Kinds of music, experiences he's had with people. The level of trust that he has, I'm inspired by.
[00:37:10] I can remember him telling me. I'm gonna go to this and such. I say, well, how are you gonna get there? I'm gonna take the bus. Well, what will it be like when you get off the bus, how will you get from point A to point B? There'll be someone to help me and most of the time, there is. I can remember driving down the road and seeing him walking down the road and going, oh my gosh, there's Josh!
[00:37:40] And if I could, I would swing over and like pick him up. On the other hand, there's been a time or two where I've said, oh, by the way, where are you gonna get dropped off? There's no sidewalk or anything. But the trust that he has in the goodness of the universe and the goodness of mankind is astounding.
[00:38:02] I have learned so much about human nature and the ability to overcome our challenges. He has such a wonderful can-do attitude. An attitude that yes, I might have this challenge, but I'm gonna have a good life anyway. I'm going to really enjoy my life. Because of his attitude and because of his abilities and his willingness to learn things and his willingness to show up as the version of human being that he is - I'm Josh, this is me, who I am, my flaws, my strengths, my quirks, my setbacks. It's it's the whole package. Just from his willingness to show up in life that way and try new things. He's willing to find a place where they're having a little concert and just get himself over there and go by himself and sit by himself and be. And if someone talks to him, great. But being willing to take that risk, to show up on his own in a strange place. Boy, if he can do that, I sure should be able to do that.
[00:39:09] So even as naturally shy as I was and how that's been something for me to overcome, boy, is he a role model for courage. Because of that, I am an author and in my books, I have disabled individuals and I like to have a blind person in my book. And I also have characters with other disabilities because one thing that Josh did is he opened my mind and my eyes to the experiences of people with other disabilities.
[00:39:49] Carole Blueweiss: Can you think of any movies where a person with blindness was depicted as you would like them to be depicted?
[00:39:58] Julie Burch: Josh really enjoys the movie Scent of a Woman with Al Pacino. That's an old one. What I like about that is he played a character who is rather caustic, rather irritable. And what I like about that is blind people aren't superhuman. They don't have superhuman abilities. They're just people with whatever personality a person has. And I think that's important to remember, to give people full credit for being a three-dimensional human being and being a unique individual. A unique individual who has a unique set of challenges, but don't we all have a unique set of challenges? The difference is the world is not so accommodating to their unique set of challenges. And it's a little easier to navigate if you have vision.
[00:40:49] Carole Blueweiss: Yeah, I'd say. When you are out in the public or with friends, do you notice others shying away from Josh, or do you notice the opposite, they're coming towards him? I just wanted to get that clear for people so that you could tell us how you deal with whichever scenario you've experienced most.
[00:41:11] Julie Burch: When I say people were kind and nice, that was when he was really little and cute little kid, like a little blonde-haired seven-year-old. What I notice that as an adult, what really helps people interact with him is his guide dog. Because most people will approach someone who has an animal. People love dogs. Hey, you know, what a cute dog. What kind is it? What's his name? So Josh's guide dog is really like the ticket to his interpersonal connection if he's out in public or with a group of people, it gives people something to talk about.
[00:41:47] What I would like to say is that it takes a certain amount of courage to reach out and talk to a stranger. It takes courage to do that. I think it does. Maybe because I have a history of shyness, but it takes courage to say something to a person you don't know. And yet if a person's blind, they don't know you're there.
[00:42:10] So when you see a blind person in a store or at an event, and they are by themselves, they don't know you're there until you speak to them. And so speak to them. Ask them a question. It could be very casual and superficial, and then that might lead to something deeper. Just like any conversation with a stranger might.
[00:42:32] I cannot tell you how many times I have taken him to church where people have completely ignored him.
[00:42:39] Carole Blueweiss: Really?
[00:42:41] Julie Burch: Oh, completely ignored him. That is very common. And were it not for the guide dog, perhaps they would not see him at all. So the blind person is the invisible person on one level. On one level, they're highly visible. Josh is a big guy. He's like six foot three, and he could be like a defense on a football team, which is not to his advantage being blind. Let me tell you, talk about a bull in a China shop. But he's a big guy and yet, for some people, he is invisible because they don't know how to talk to him. They don't know what his experience is. So it's easier not to.
[00:43:23] And I would say what a shame. Because he can't reach out to them. He doesn't know they're there. And that goes all the way back, you know, back to childhood. He doesn't know you're there. And when he was really little, if you walked down the hall and he was in his room, he would go, "hi!" Because if he doesn't know who you are or where you are or what you're doing, he just hears a sound.
[00:43:52] I wish people would reach out and talk to him more. And it's rather shocking to me how long it took him to find a church where people would treat him like an individual that was worth knowing. There's been a couple churches that I know of that have treated him that way. And that was maybe the most heartbreaking part of parenting someone who's blind is seeing the isolation because people avoided talking to him. And when he was growing up, the other kids leaving him on the bench, running and playing.
[00:44:33] Carole Blueweiss: Getting so much attention. And yet there was so much in his development that was the opposite of attention. What's interesting too is just the idea of development and how children, you know, with disabilities and just children in general, your life changes with your age and how that, you know, is dependent on so many factors.
[00:44:54] And one big factor is society and prejudices and marginalization and stereotypes and fear. I have actually this blind man, his name is Neil, in my neighborhood in New York. People know him and they help him cross the street. He doesn't have a dog. I wonder to myself, is he bothered that I'm trying to be nice to talk to him or is he welcoming that even though it seems like he likes it, but you wonder because I'm not him and it's, he's such a different person. But I think what kind of what you're saying is if you put yourself in their shoes, everyone's the same. So of course he would wanna interact. And if he doesn't, he'll say so.
[00:45:33] Julie Burch: Right, right. I mean, are you annoying him? I don't know but that's really, it's an individual thing because he's just another person. But the fact that you're reaching out, you're giving in an opportunity to talk to you if he wants to. Whereas if you don't reach out, you don't exist to him, maybe. Maybe you're just sounds on the sidewalk walking away. And so you have to give him that opportunity. Then at least he has a choice. And when Josh was growing up, he had very little choice in that respect because people, I think in general, avoided him. Adults talked to him more than kids. So he always had a really nice vocabulary because adults were more inclined to talk to him.
[00:46:16] Carole Blueweiss: Is there anything I have not asked you that you would like to...?
[00:46:20] Julie Burch: Well, I wanted to talk about guide dogs. We didn't have a guide dog for him growing up. I don't know if I regret that or not, but people think guide dogs are the panacea. The guide dog helps him with the safety issue. However, if they don't know how to go somewhere, the dog doesn't know because the dog can't read a map. If it's a place you always go, the dog might go there. But I'll never forget, once I was handing Josh something on a paper plate and his dog just scarfed it right off that plate.
[00:46:49] So that was one of his first guide dogs. That guide dog also walked him right into a low hanging tree branch. So I'm like, okay, the dog doesn't know how high that branch is.
[00:47:01] Carole Blueweiss: Interesting.
[00:47:02] Julie Burch: I was walking Josh and he at the time had a girlfriend who had a guide dog. So they both had guide dogs, right? And I'm walking them into a restaurant and what they do is they ask that they command the dogs to follow me. So I'm ahead of one of them. And we're like a little parade, right? So we're going into the restaurant and we go through the front door and we walk into the restaurant. They're right behind me, you know, watch and follow, watch and follow, they're telling the dogs.
[00:47:35] And we go into the restaurant and we take a right. And then we take a left and I can hear 'em behind me. And then all of a sudden we get to the table. And they're gone. Where did they go? Well, we had to take this left and walk a few feet to the booth, but if you would go straight, you would go into the kitchen and the dogs knew where the food was.
[00:47:56] So I'm like, where are they? The dogs had led them right into the kitchen because those dogs knew where the food was. I thought that was hysterical. I would have to say there are opportunities for humor when you're living with someone who has a particular disability.
[00:48:17] Carole Blueweiss: We just assume that they're also perfect because they've been trained to be perfect, but that image of guiding Josh running into the tree.
[00:48:24] Julie Burch: In the final analysis, dogs are dogs. And they're pretty amazing. And they're wonderful companions. But the bottom line is, a guide dog is not a panacea. He is going to be a lot of work. When you pick up after your dog, when it uses the restroom, imagine doing that blind.
[00:48:43] Carole Blueweiss: Yeah, I was gonna say, who takes care of the dog?
[00:48:46] Julie Burch: And then there is no additional funding. So once you get a dog, you know how expensive pets can be. And Josh had one guide dog that had a lot of dental problems. A lot. And there was no assistance for that. It is not easy for people who are blind who have a guide dog. They have made a huge commitment and they're devoting a huge amount of their own resources to that dog. And they don't usually have a lot of resources.
[00:49:13] I think people who are blind are one of the most unemployed group of people who are disabled. Even though there is some adaptation made for people who are blind. It is still probably easier for employers not to make that adaptation. There are very few jobs out there for people who are blind and then they have to have the special equipment.
[00:49:35] Yes, the Blind Services will sometimes come forward and install that special equipment. But it's still hard for them to find work. And then they have to be able to get there. Fortunately, in some communities, public transportation has special accommodations for people who are disabled, but not all communities have that. So when a blind person is living somewhere, there's a lot of resources that need to be in place to help them in that community.
[00:50:04] Every parent of a handicapped child or a child with some kind of challenge, is wondering in their head, what's gonna happen when we're gone? And then you have to make those kinds of legacy plans or those, you know, trust plans or whatever, so that you know that this person who might be relying on you for certain things is gonna be okay in your absence.
[00:50:27] Carole Blueweiss: That's a whole nother interview and it's the first time it's been brought up. That's a great consideration that must be on the minds of every parent.
[00:50:38] Julie Burch: I don't think any parent ever stops being a parent in some way. Their kid, even when they grow up, even when their kid is an adult, and even when your relationship becomes symbiotic, you still are thinking of them as far as what are they doing? How are their needs going? Are they okay? And what's gonna happen later?
[00:51:04] Carole Blueweiss: Anything you'd like people to know?
[00:51:06] Julie Burch: I am a mindfulness coach. I think that for parents of people who are disabled and for disabled individuals too, mindfulness practice is huge because it helps us become more resilient. It helps us deal with stress much more effectively. I have currently eight books out.
[00:51:29] Carole Blueweiss: Wow.
[00:51:29] Julie Burch: If you count the coloring book that I made, because I'm an artist and a writer. My author name is Juliet Brilee, B R I L E E, Juliet Brilee. I like to think that my books are inspiring. Joshua actually consults on my books. I will read him and he helps keep me in line with my characters.
[00:51:48] I will check with him. I'll say, is that realistic? Is that, you know, tell me, am I nailing that? My books, they're available on Amazon as e-books or in print.
[00:51:57] Carole Blueweiss: In braille as well?
[00:51:59] Julie Burch: They are not.
[00:52:01] Carole Blueweiss: How did Josh read them?
[00:52:02] Julie Burch: I read them to him and actually we had a culture when he was growing up, a culture of me reading novels to Josh. So he got his book fill that way, too. After reading him my books, then I will revise accordingly.
[00:52:17] Carole Blueweiss: Great collaboration.
[00:52:20] Julie Burch: Yes, yes. And I thank him in the author's note on most. And when I am wildly financially successful, perhaps I can hire him as well.
[00:52:31] Carole Blueweiss: Perfect.
[00:52:32] Julie Burch: Yeah.
[00:52:33] Carole Blueweiss: Thank you so much, Julie, for being my guest on Wisdom Shared and sharing your story and all your wisdom. I look forward to speaking with Josh. You provided a very important view from your perspective as a stepmom. And I know I learned so much, so I know that it'll be very, very eye opening and increase the empathy out there for people when they might see somebody who's having challenges with their sight.
[00:53:06] Julie Burch: Well, thank you for the opportunity to share some of this wisdom and some of my experiences. I think that anytime we become more conscious of other people and the challenges, our heart of compassion opens and we are richer because of it. So thanks for this opportunity. I think you're doing a great work in the world. Thanks Carole.
[00:53:27] Carole Blueweiss: Thanks Julie. To find Julie's books, go to Julie's author website at julietbrilee.com. That's J U L I E T B R I L E E dot com. And for the links to Julie's Facebook pages, newsletter, and email, please go to the show notes where you will find these other resources. In the next episode of Wisdom Shared, you will hear from Josh Burch, Julie's stepson, who shares generously what it's been like for him to live 48 years, his entire life, without vision and the social cues he's had to learn in order to fit in.
[00:54:13] Josh Burch: If you've never met a blind person, you meet a blind person that's not facing you, doesn't have good posture, they might say, gee, you know, I don't wanna be around blind people. Or, you know, if you go for an interview, they're like, I don't wanna hire this blind guy. All blind people are like that. So posture and the way you look at people is very important.
[00:54:37] Carole Blueweiss: After interviewing Josh, I gained a whole new perspective of what it's like to be blind, how to approach someone I might see who was with a guide dog and so much more. Josh certainly increased my awareness in general about what it's like to live in a world made by people with sight.
[00:54:55] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you're hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.