Welcome And Meet Janie

Brian 0:20

All right, welcome back to the Vero Beach Podcast. This is Brian.

Shawna 0:23

And I'm Shauna.

Brian 0:24

And today we are setting up a special guest. Her name is Janie, and she is the author of multiple books. Is that correct? Yes. Teaching your baby braille. Is that correct?

SPEAKER_02 0:36

Teaching your baby in Braille. In Braille.

Brian 0:38

In Braille. Okay.

Shawna 0:39

That changes everything.

Brian 0:41

Yes, that's right. Well, we're so glad to have you on the podcast with us today. Thank you. Yeah, yeah. Well, okay, well, we always like to start off to kind of get to know a little bit about you. So tell us a little bit about you, Janie.

SPEAKER_02 0:53

Well, oh my god. I'm Janie Desire, and um I'm a single mom to an autistic child with ADHD. And I

EDS And Losing Vision

SPEAKER_02 1:02

was born with actually two rare diseases, which people really don't understand because I have EDS, which caused me to have keratoconus. So it's like one rare disease caused the other. Whoa. So yeah, so this is what caused me to lose my sight.

Brian 1:18

Wow. Can you tell us a little bit about like Yeah, what is EDS?

SPEAKER_02 1:21

EDS is called Elder's Don syndromes. I think I'm saying it right. This is something that I just found out about from doing a genetic testing for my son trying to figure out what caused his autism. Um, it basically messes with the um cartilage in my whole body. Okay. Um, so and it's especially on the corneal of the eyeball. So, and I hear a lot of people like, oh yeah, you can go ahead and have surgery and get it fixed. I was like, Yeah, but when you have the other rare disease that causes it, it's no point because it's just gonna happen again. Oh, so it's just like there's no point. And then that's when I was like, oh, so this is what caused me to get keratoconis for my eye disease.

Brian 2:04

So, okay, so that's very that's yeah, that's very unique. Like, I've not ever heard of, you know, I've never met someone that's had to deal with that. So what are the like what are some of the challenges? Like, what does a normal day look like for you?

SPEAKER_02 2:15

Oh man, okay. Dealing with EDS, people think that it's like, oh, it's probably nothing. It's like the worst thing ever. Because it's like your bones and your body just hurts tremendously. And I'm the kind of person like if I have the slightest bump or bruise, it will last, and you can see it. I'll probably swell up from just knocking my hand against the wall. I can even actually even break a bone. Well, like that's how sensitive I am. That's how I tell people I was like, I'm like a rose. You can't, you gotta be delicate with me.

Shawna 2:47

Yes, right.

Brian 2:49

But you got thorns. Does that mean you're gonna stick people too?

SPEAKER_02 2:52

Or I just might. Just might, just might. You never know.

Brian 2:57

Oh, that's that's that's good. Okay, tell us about the book. How how did what

Why A Baby Braille Book

Brian 3:02

what inspired you to start writing?

SPEAKER_02 3:05

Well, when I found out I was pregnant, um, I was really concerned about my son getting my eye disease. We did all the testings and everything that we needed to do while I was pregnant. They couldn't find nothing. I was even considered high risk during the pregnancy because they were just like, okay, we need to find out. And then they were just like, well, at this point, we're not even sure if your eye disease is genetic or if it was environmental. And then I was just like, oh, so I just gotta wait. And they was like, yeah, pretty much. And I was like, how long do we have to wait? And it was just like probably around the same time as it happened to you because mine didn't show up until after the age of 21. Wow. That's when my eyes start affecting me. And then I was just like, So you guys tell me I have to wait until he's like an adolescent and or 21. There was like, yeah, until if his start, his eyeballs are starting to shape form or something. And I'm like, oh no. Wow. That really took me for a loop. And that's when he, when he actually was born, he got here. I was, I'm like, okay, I'm trying to figure out if they have some books or blocks and things that I can interact with my child and teach him like the basic alphabets and numbers. But I wanted books that were also meant for sighted kids. I went to Division of Blind Services and asked them, I was like, hey, do you guys have any baby supplies that I can get? And they're just like, here goes the gray area. This is where it felt really weird for me. There's a like, oh, we do have, you know, things for kids that are blind, but you're you're the one who's under our program. Your child isn't. So we can't give you any supplies for babies or for kids because he's not blind. And I'm like, but I'm the mother who wants to work with her child. What do you mean? And the thing that really pushed it was that um in school, that's when I start working on my books. It was mostly for like a class assignment, but then I start making it into like a cited book that would actually work with real with blind parents. And I was just like, and when it just came into something digital, then it came into a prototype until now that I actually have the copy.

Shawna 5:14

What are the ideal ages um for children to be using your books?

SPEAKER_02 5:19

I would say from as soon as you can as possible, like from zero to ages like five, six. That's the most part. So therefore they're like ahead of game, just touching and feeling getting detectile of like, okay, what is what and how what is this? And especially with the parents in the parents who can interact with their little ones, grandparents, that's why they also large print for people that have neuropathy or sense of feeling problems, and kids work better with larger prints, yes, right. That makes sense. Oh, that's that's smart.

Brian 5:50

So, what was the okay?

Publishing Hurdles And Specialty Printing

Brian 5:51

So I know we have a lot of people that that tune into the podcast that are entrepreneurs that are some of them are looking at, like, hey, I want to look at going down the path of launching, you know, producing a book or you know, stuff like that. So I'm very curious what was the process like for you through the writing and the designing and the publishing.

SPEAKER_02 6:09

Oh my goodness, when I I went through it. I went through it. I went through it. This is something that I um honestly felt like I was supposed to push out about like two years ago because I had my books designed of how I wanted it. But then you have things that you have to worry about as copyright. Um, then having to have your books print ready for a print company, then you have to find a print company who can print your books. But since my books weren't regular paperback or regular hard books, like exactly. And on top of that, it needed Braille. Yeah, they were just like, I got a lot of nose. Oh no, we can't help you over here. We can't help you here, we can't help you here. And I'm I told you, I went.

Shawna 6:55

I can only imagine because I've helped um two people get books ready for print and they were just regular old books, and that was hard enough on its own. And every time someone would say, Oh, I want, you know, a ribbon bookmark in my book, nobody will do that for you. Or somebody I know somebody right now who wants the cover to be made in fabric. Nobody will do that for you. Like it's so hard to find specialty printers.

SPEAKER_02 7:21

And then if you do, you have to actually go overseas.

Shawna 7:24

Right, exactly. Yeah. And is that what you had to do if you draft together?

SPEAKER_02 7:28

And you talk about the wait. Oh, the patience. Oh, the patience. And I was just like, man, this is supposed to be out since last year. When's gonna be on? Like, why am I still waiting? I did all my work already. Like, that's the whole thing.

Shawna 7:46

But it was just like, you know what, just wait, God's time, it'll all work out. Yes, that's it's such a good perspective to have because it does take so long.

Brian 7:55

Okay, you didn't have this problem before, but now you had to, you're

Learning New Skills After Vision Loss

Brian 7:59

talking about the different senses. So now you have to lean into learning how to use senses that maybe you weren't using as much before. What was that like? And what was some of the challenges there?

SPEAKER_02 8:10

Oh man, it was more so I would say going through that, it was all in determination in my will. Because some people really don't have it in them. Like, because once you I noticed that a lot of people when they when they were there, who people who had sight, people who lost their sight from accidents, just life happens, or medical reasons why they lost their sight. It was a lot of like depression at the school because it was a lot of people like, oh my goodness, my like my life is like this. Now I have to do, I'm here learning this stuff. Some people weren't really motivated to be like, okay, what is next for me to come? Because it's just like what am I gonna do? I can't see, I can't do nothing. And I'm like, I didn't want to feel like that. I know it's just like my goal was just like, I want to go back to school. I want to get my bachelor's, I want to do this. And then and the thing that really drove me the most to finish and go even harder was because everybody was just like, oh, I don't think you're I don't think she's gonna lose. I don't think that's gonna happen. Like, I don't know if she's gonna be successful to actually go to school and do it. And it surprisingly, surprisingly, even even some of the teachers that were at the school, they were just like at the end, they were just like, she really surprises us. Like, this is like one of the most amazing students. Like, she really did go over and beyond. The whole thing is like, I also want people to learn is that it's not what they say, it's what you're what's your mindset and what you say. You can hear it from anyone, it might even sometimes be as far as your own parents can even say words that put you down. And they probably are not like, oh, I didn't really mean it that way, but you took it that way. But it's up to you if you want to keep it in, because you're it you are what you make of yourself. And I'm teaching all the young ones and even the older kids, I'm like, this is what it is. You can't no one's your own, you're your only failure in life, no one else. So if you want to get up and make something, you can. It doesn't have to be drastic, it could be the most simplest thing and be like, yes, I did it. I even tell the ones that was like, Yes, I know you'd be like, Oh, I don't have no sight, I can't go nowhere, I can't do nothing. Do not let fear hold you back.

Brian 10:25

That's powerful. That's powerful, yes. What

Mindset Faith And Staying Motivated

Brian 10:28

would you say you have learned the most about yourself going through this journey?

SPEAKER_02 10:34

I learned that I am very humbled. It has humbled me in a tremendous way because this journey wasn't easy. And it made me even be thankful that I even had the strength to even go through because I could have given up so many times. And it's not only with just like, oh, with my personal life, but also dealing with my child because of his disability, also. So I'm just like, when I'm telling you, it was just like hurdles on top of hurdles, and it felt like a zigzag one minute you're up, and the next minute you're down. You have your highs, and when the high is high, the low is low. And it came to the point that nowadays that I don't even know how to interact with the emotions because if I'm happy, it's just like a, oh, you got good news. Okay. And when it's something bad, I learn how to just okay, oh, it's bad. Just to stay, learn how to stay on that model tone. So therefore, it won't keep me out of loop because I feel like when I do, and it's just too much for me to handle. Yeah. That's why. So I'm just like, oh, okay. Because sometimes something can be really good. And then you have something just comes over, bulldozer, boom. And just like, okay, now let's not forget. Just yeah. So I would say this whole experience has made me humble, and it also got me closer to God, leaving my faith. Because you know how they say, Oh, you have a you have to have faith as small as the mustard seed. I said, No, I had faith as small as dust. I'm like, because I didn't have it at all. My business wasn't funded with no one, it was all by me.

Shawna 12:08

Wow.

SPEAKER_02 12:08

No grants, no loans. It was just all me.

Brian 12:12

And I mean, it was a journey. Janie, we've we've loved having you on the podcast. I I have one more question I want to ask you before we wrap up, though. Uh, and again, let people know how they can find out about your book. You said you can go to your website. What is your website again? One more time.

SPEAKER_02 12:29

www.t y B I Braille. And his braille is B-R-A-I-L-L-E dot com.

Brian 12:39

I'm glad you spelled it out because I spelled Braille with one L and my autocorrect said, that's wrong.

SPEAKER_02 12:44

A lot of people do, to be honest with you. A lot of them do. And I was like, wait, what? And I get also like, how do you teach Braille? How do you do that? How do you learn it? I'm like, if you can play Tetris, you can re-braille. Oh, there you go.

Shawna 12:57

That's that's a great uh comparison. I love that.

Brian 13:01

Last question

Closing Words from Janie

Brian 13:02

is what would you say to someone that, as you talked about, you know, sometimes people look at these disabilities and they'll hold them back. What would you say to someone that is in that place right now where they've they've learned about a disability and they find themselves being held back?

SPEAKER_02 13:16

What I'll tell them is literally, God is in control. Um, you can't really take what you hear from doctors or anybody, take it as a grain of salt and live your life to the fullest. Live your life to what makes you happy, not what makes other people happy, not even for your parents. Live for yourself because guess what? Eventually we're all going to die. And if I if it was up to me, I'd rather know that I died living a happy life and doing something productive. And right now I'm just trying to make a change, not only for me, but for my son and open doors for other families who are also in the same predicament. I wanted to let you guys know also my books come in three different languages. Oh, wow. Wow, yes, that's awesome. English, Creole, and Spanish. The Spanish ones, the other language have not come out yet. I'm just waiting to drop off the other ones, then I'm gonna drop off the other languages. So therefore, it'll be diverse for other families when one can't really read English.

Brian 14:17

Oh, that is awesome.

Shawna 14:19

And once you know those dates, if you let us know what they are, we'll put them in the podcast notes so that as people listen, they'll find those dates.

Brian 14:26

Yeah, and anybody's like it's like how did she spell that website? You can find the link to the website in the show notes. So just click that link, you'll go right to her website. So thank you again so much for being on the podcast. We've loved having you on.

SPEAKER_02 14:38

Thank you. Thank you.

Brian 14:40

And so if you guys have loved this podcast, make sure you guys click subscribe and leave us reviews so other people can find your local podcast here in Bero Beach.

Shawna 14:48

And with that, catch you next time, neighbor.