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18. Life with JAK: Embracing Albinism and Low Vision

Marissa: I am extremely excited for you all to learn more about Tikia, JAK, and their book Life with JAK: Living with Albinism. But before we dive into our interview, I thought it was very important for you all to hear from JAK himself why this book is important and what he wants people to get out of it.

Tikia: What’s one thing that you want people to get out of your book or learn from your book?

JAK: They can just be themselves and they don't have to worry that they have albinism. You're just like, “no, I'm different and everybody's going to make fun of me.” No, that's not going to happen because I've been through this like yeah, three years, I guess. And nobody made fun of me. They just asked me questions, like, “why is your skin so light?” I was just standing there like, I'm like, “oh, that's because they have albinism.” And then they're like, “why are your eyes wiggling?” Well, it’s because I have nystagmus and they’re like “ohhh.” Yeah. I still have a lot of friends at school. So you don’t have anything to worry about.

Marissa: Honestly, I wish I had that kind of confidence when I was his age. I would not be surprised whatsoever if he started his own podcast over the next few years. Stay tuned to learn more about Tikia’s experiences processing a new diagnosis, educating those around her, and writing this incredibly informative book.

*Intro Music*

Marissa: Welcome back to another episode of Legally Blonde & Blind. I am so excited to have a very special guest, a published author.

Tikia: I'm so honored to be on with you, Marissa. This is such a great opportunity. My name is Tikia Kidd and I live in Illinois. I have two children. One has albinism and his name is JAK or Julian. He is 10 years old. I have an awesome and beautiful daughter. Her name is Corin Kidd and she's 11 years old. She will be 12 in April. And, my hobbies are, I'm an educator, so I'm always learning and wanting to do fun things that are new and exciting for us or just repeating old activities. I also love to read, I roller skate and just enjoy spending time with my family and traveling as often as I can.

Marissa: We obviously know you're here to talk about your experiences with albinism and what ultimately led you to write your book Life with JAK. So to get started, could you talk to us a bit about that process, where you found out about JAK’s albinism and how you sort of processed that new diagnosis?

Tikia: Yeah, sure. So he was born on October 3rd 2011. I had a c-section. My pregnancy was completely normal in contrast to my daughter's. With my daughter, I was on bed rest. I actually had gone through IVF with her because my husband and I had found it difficult to conceive. With Jack, it was all-natural. 10 months into my daughter being born, I found out I was six weeks pregnant with him all-natural. So like I said, all of my lab work came back normal Right? Because as you know, there's no way to detect albinism through pregnancies. So when my OB pulled him and he passed him to the nurse that cleans the babies off, he said, “oh, check for albinism. “ And I'm going, “like, what?”

And you know, he, you, he was crying, you know, he was thriving. He sounded normal, but then after they cleaned them up I saw him and I'm like, “Wow. You know, he doesn't have much color.” And you know, it took me a minute and I'm like, “I don't know what albinism is.” And so, you know, I thought he looked different, but nonetheless, he was healthy. He passed his Apgar testing, and you know, he was beautiful and, I just kinda was like, “all right, I have a healthy boy.” And I was like, “wow, maybe he won’t have any color. Albinism - does that mean albino?” And I'm processing that.

Marissa: I can’t imagine that right after giving birth. And you're trying to process a new term that you probably didn't hear that much about before having him.

Tikia: No, absolutely not at all. Like, I was on another talk show and I even had to say the word phonetically several times before I could even pronounce it. Because when he said albinism, I was like, “albo-what?” So he's like albinism. And so my OB came to speak with me maybe the next day after I had him. He's like, “Yeah. You know, we're gonna monitor him because he may have albinism.” And that's when I learned how to pronounce the word and he said, “You know albinism. They don’t have any color.” I'm like, “oh, okay. I know what that is. and I've seen someone with albinism, but okay.”

And so with African-Americans, we can kind of tell the color, what color they may end up being, because a lot of times they're, we're born with lighter skin than we actually become. If that makes sense. And you can tell from the ears, like the back of the ears and the knuckles on your skin, and usually, that's kinda like the telltale sign of what color you may become. And so I was looking at his knuckles and his ears. No color. And I was like, “well, maybe it's going to come.” You know, but I don't know. And then my mom and family were like, “well, when you were born, you were, you know, this color and you had blondish brownish hair.” And, you know, I was looking at my pictures and I was like, “okay” but I still had a little more color.

So I just say, you know what? I'm not going to worry about it. He's happy. He's happy. And what I did notice while we were in the hospital is that when the lights were on, he appeared to be asleep. But then when the lights would go off, he'd open his eyes. And I was thinking he was asleep.

Marissa: Oh that’s so interesting! I never thought about that.

Tikia: Absolutely. Like he, he was, he was very calm and all the time, I would think that he was asleep and, you know, we were talking and laughing in the hospital and just having these normal, you know, new baby kind of moments where we were a little loud than a little soft and I'm thinking, okay, I just, he just ate, just nursed him. He's quiet. Then I'd say, oh, you know, I don't know what it was. Maybe we close the shade to the curtains, or I just noticed that night we turned the lights out or the sun wouldn't be shining near him. And for whatever reason, he would open his eyes. And at this moment, I'm still, I still don't know much about albinism. I didn't know that it affected his vision. So I'm like, oh my goodness. Like he just opened his eyes. And so we found, we started playing like, you know, turn, we turned the light out and turned it back on just to see, like, is it coincidental or is it really a reaction. And so it was definitely a reaction and we mentioned it to his doctor because she came to see him as the sun was setting and she's like, “oh, he's sleeping. “ And I said, “well, I don't know. I said, let's turn the light off.” And she said, okay. So she turned the light off and sure enough, his eyes popped open and she's like, really? And she didn't really know about albinism either, but she was more so concerned about his health. But he passed everything with flying colors, you know, the hearing, he vision, and then like the muscle, you know, the reflexes and everything. No problem. And so she says, ”you know what? The only way to diagnose albinism is when he's about three or four months old, and I'm gonna refer you to an ophthalmologist and they'll look at the back of his eyes and they'll be able to see if there's any color. And if there is color, then we just know that maybe he doesn't have albinism. If there is no color, then you'll have your diagnosis.”

So fast forward to January and we take him in, he has his test and he is diagnosed with albinism and I will say like in the room at that moment, of course, that's not what you want to hear when you're uneducated about it. And at this time I was not educated. I was just like, “oh my goodness.” You know, he has albinism. And I noticed that his eyes had nystagmus right away. But I was just like, “well, you know, babies are young, they're young at this time”.

Marissa: You sound just like my mom. She noticed it right away but everyone else said it wasn’t a big deal.

Tikia: Exactly! Everyone said, “oh no, no, it's it. He'll, he'll grow out of it.” And it was a little bit of denial in certain people. And so, as I said, I noticed the nystagmus, and then I still was like “well, you know, he's still young. Doesn't have control of his eye, all of his muscles yet.” And you know, so I had that, but then when he, when the optometrist said, you know, okay, he does have albinism, we don't see any color on the back of his retina or his Iris and we were like, okay. But then he said, “There's an organization called NOAA, the National Organization of Albinism and Hypopigmentation, I'm going to give you the website. You can reach out to them because they have a plethora of information.” He says, you know, “educate yourself about what it is.“ You know, and he was like, “you can come back and see me.”

So thank God for him giving me that information because the world opened up to me. It was just like, “wow, this isn't a condition to be concerned with for the livelihood of your son. It's just modifications that you're going to have to put in place.” That's going to make your day-to-day look a little different from people who can see normally in those who have pigment in their skin. So this isn't the end. This is the beginning

Marissa: No, I think that's amazing that you've had a good experience with your doctor telling you about NOAH, for example, giving you those resources. I think that's so important with the new diagnosis, not to catastrophize it, which I think can happen, especially with vision related diagnoses, but looking at things like “okay, what are we going to need to do differently? How am I going to move forward?”

Another point I want to add before I move on is that when I was first born, they thought I had jaundice. So my parents put me in the sun. That reminds me of your son not opening his eyes in the light. And after they got my albinism diagnosis, they felt so bad. They thought I probably hated it.

Tikia: And Marissa, that's so funny because that's what happened to my son. I forgot about that. They had, my doctor had me placing him in the sun on his back and his stomach for like, um, maybe five minutes each she said maybe Nope, three. It was under five. I don't remember it. Wasn't a considerable amount of time, but she thought, “oh, he's probably vitamin D deficient.” So put him in the sun. He may have a little jaundice here. And you're right. We were sunbathing him for a while and I look back and I'm like, “oh my word, we should not have been doing that. “

Marissa: But fortunately, I don't remember. So he probably doesn't either.

Tikia: No, absolutely. He does not remember at all, but you had joggled my brain when you said that. That's right. I was moving him to the window, you know when he was little in his little co-sleeper. And then she told me to take his clothes off. So he had just a diaper and no protection.

Marissa: So after you got this new diagnosis, how did you find yourself explaining it to your close family and friends? Were there any misconceptions about albinism that you encountered?

Tikia: You know, we, well, one thing about the, our, our culture and our ethnicity, with him having albinism, the lack of pigmentation kind of speaks for itself. Like, okay, he doesn't have any pigmentation, so we already know that he's different in that way. So explaining it was just trying to get them to understand that his color is never coming in. If that makes sense, like, you know, I told you, we kind of look at the ears and the knuckles and you know, you say, “okay, well, this is what colors he's going he will end up being, and that that's not going to happen for him.” This is who he is right here and now. And we accept that and we move on, but I did, you know, we all had to educate ourselves, around albinism.

One thing that helped me was that NOAH had a thing called Rapid Responders where parents who had kids with albinism reached out to you as a new mom or newly diagnosed family. And take the time to answer your questions. Just give you the information, the warm, fuzzy feeling of what it's going to be, what questions you have, in regards to the development in different stages of life and questions around just, your day to day, going out and playing, talking with family and friends about what albinism is. And the person I spoke with was Sheila Adiamo, she's very heavily involved in NOAA and yes, she would call me and we were on the phone for about an hour. My son was six months and I think her’s was 12. She gave me a plethora of information just from, you know, her son being older and him being a boy and me having a son and just kind of walking me through the stages of development and just letting me know that it's okay. And, you know, reach out to your education resources. Reach out to social service. Have them come out and give them a diagnosis and let them know, or have them look at his vision and how he's moving around in the house. And he passed all of those. Like he never needed any, he never needed any additional therapies, like occupational therapy.

So, you know, linking up with NOAH to be able to explain to my family, you know, what we needed to know. And once I explained, okay, his skin is going to be like, one of the things that we have to protect. And as usual, like us, we typically only would use some sunblock if we were on the beach. But that wasn't even always, it wasn't a regimen. You know, it was like we as black people, we typically think that we don't need sunblock, but that's not always the case, but for him, it was the case of now we have to build sunblock into our shopping list and wherever he goes with family members, we tell them to put the sunblock on his face, make sure you get his arms and his neck. And you know, every part of him. And then he's gonna need his glasses, his sunglasses, and his hat. You can make sure he has those three things, then he's gonna be just fine and he'll thrive just like any other normal person, normal boy.

But also there was the low vision. And I think, to be honest, I think about maybe two years ago is when I think it kind of set in for even family members that he has low vision because he was so good at accommodating. Uh, yeah, he was so good. I'm sorry, compensating. He would compensate. And with him being like the youngest, a little boy, most of all, and very active, most of the time he was holding someone's hand. Most of the time he was being held and just kind of oriented with the consciousness of I'm showing you where to go, but now that he's older and he wants to navigate on his own, you will see him trip over that box. You'll see him miss that incline when you have to step up or step down. One time he ran to a park and he didn't notice that around the edge of the park or a little playground area to kind of keep the wood chips in.

Marissa: Oh no…

Tikia: I know, you know exactly what I mean. And he was running full speed. Like any normal kid, he totally missed it. And he fell, he did not get hurt, but to have that, the other kids there who saw him, he was a little bit embarrassed, but that's when, you know, people noticed like, oh, well, how did he not see that? That's part of the low vision for him, you know, that he knows,

Marissa: I think it's hard for young children, especially to vocalize that they have low vision because even if they know they have albinism, it's, you don't really, it doesn't really hit you, that your vision is different than others until you get a little older and you have more of those experiences where you're moving farther and farther away from mom.

Tikia: Absolutely. That is so true. And for school, I would go in and kind of explain to the staff and whoever was going to be working with him that, you know, he has, he has little vision, but he is able to move around like any other normal kid. But, you know, he just may not see certain things that other children might see right away.

Marissa: I think people imagine a binary with blindness to where they think, oh, this person is either completely blind or they're sighted, but really it is the spectrum. And even with albinism, there's so much variety in the amount of vision.

Tikia: That is so true.

Marissa: As some people can drive even with the assistance of a bioptic and then there are some people like me who are legally blind, some people use canes. It really is such a diverse spectrum that I don't think most people consider it.

Tikia: Like, as my son is growing, he's 10 now, so we're 10 years in, but I'm learning, like you said, about all the different spectrums of vision of the, of the community. And I say low vision with quotes, because it's just so diverse. Like you said, there are some that even use seeing dogs and like you said, canes and things like that. Fortunately, he has actually good vision to be diagnosed with albinism. He sees quite well. But he's still lower than the average.

Marissa: Yeah. That's what's funny about it, Albinism in particular, relative to other vision conditions, is better, right? But still lower than the general population.

Tikia: Yes, exactly. That is so true.

Marissa; Leading into that. In terms of that education piece, what ultimately inspired you to write Life with JAK: Living with Albinism?

Tikia: Well, my inspiration, um, actually came when he was about two or three and I was looking for books to read to him about him. You know, you can find books about children who are going through so many different challenges or, um, uh, I wouldn't say disabilities, but just different ways of handling life, whether it's autism, whether it's diabetes, there's not a lot of information about albinism and I also noticed that some just being out in the public, a lot of people would give me the look like they wanted to ask, but they wouldn't say anything and it could have been just because they didn't want to…

Marissa: They're nervous about offending you.

Tikia: Yes, exactly. They didn't want to come off offensive or anything like that. And so even when I saw other people who were African-American, who had albinism, you know, I would kinda want to have this conversation like, “Hey, my son has albinism too. Let's have this conversation.” And then a lot of people would just turn their backs and keep walking because I think they weren't ready. Like maybe they weren't at the acceptance level where I was. And then there were families that would talk in and we would share information. And so what I found was a lot of, um, his teachers and caregivers (and I wouldn't say caregivers cause he never went to school as a baby, the family kept him). And when he went to the school when he was three, even his three-year-old teacher did not know much about albinism at all.

And so I would find that, you know, wanting to drop him off, but feeling like I'm obligated to tell this woman how best to care for my child while I'm away. I didn't want to leave him, just let him loose and say, “oh, he's got normal vision. He'll be fine.” So I would find myself having maybe a 10-minute conversation.

And so I was like, you know what? I should write a book. I should, you know, have a key. And then I started thinking like, it should be kid-friendly. Oh, it should be his book! Well, what other character would it be? Like what character to put in a book beside him? So let me just, so I started thinking about it and you know, put the pen to the paper. And I just started writing, thinking about all the books that I've read as an educator and a. You know, being a teacher. I'm licensed to teach early childhood up to third grade, so I have a BA and I've come in contact with rich literature. And so I started thinking about what are some of the books that resonated with my students? And it was non-fiction, it was those books with real pictures of real images and things that they would see in their environment, nothing like cartoons or fiction. As it relates to conditions or places they've gone, they want to see real people.

Marissa: What's great about the book is that you have a lot of pictures of JAK in it. So it really sends the message that there are people with albinism who are just regular people. They are living normal lives. I, because when I was little, I only had one book and now that you’re making me think about it, they were cartoon characters. So I didn't really make that connection, “Oh, Hey, there are other like albino people out there besides me.”

It just, it almost felt like another universe. So I think that's a really, really powerful point that you have there. So what were some of those main messages and ideas that you wanted to send across with the book?

Tikia: The main message was that they're real people out there who look like me, um, that are going through their normal daily routines. But I wanted to bring to the forefront that people with albinism aren't so different from you and I, but there are modifications from sunblock to sunglasses, to sunscreen, which are the three major components of those who have albinism. But I also wanted to highlight and celebrate how brilliant and intelligent and beautiful albinism is.

And in the book, there's actually my son with a snake who has albinism. And then just to show that albinism crosses, even plant species, animals, and humans. And there it's, there's this commonality, uh, between all three, which is just the pigment, but each one of them can still survive. And be just as similar as other plants and other animals and other people.

Marissa: So variation rather than something that's an impediment or a limitation.

Tikia: Absolutely. Absolutely. And I wanted to write where any reader from zero to a hundred could understand it, appreciate it. And then just feel like they've gone through a day in the life of Julian or JAK. Bring in also to have some of the activities that he's currently doing as a young boy, just from gymnastics to climbing trees, playing at the water, the splash pad, and things like that. We can all relate to all of the activities that he normally does, that he participates in…

Marissa: That's amazing. So after you released this book, how did you use it to inform people around you and educate community members?

Tikia: So believe it or not, Marissa, the book was just released on November 5th of this year 2021. So it's been out what, two months now, and I've been on your podcast and then one other video podcast. And, I'm currently just trying to get it into libraries and different school districts that are local. And then I shared with my family and friends, who have all given positive feedback on this book. And a lot of my family and friends said they learned so much from reading the book. And these are people who've known JAK, all of them. And they have even said, this book has really helped them understand more about albinism. And that just warms my heart because that is my, that was my mission. It was just to inform the public at large about albinism and…just celebrate albinism as well. I mean, I really think it should be celebrated.

Marissa: No, I think it's great that through this book you're celebrating albinism, right? Because especially in communities of color, they don't look like the same skin color as you, so that can almost be stigmatized. Right? If you don't look like the rest of your family. So I think it's really important to acknowledge differences in appearance and say it's something that's beautiful, right? It's not a curse. It's not something you should be ashamed of. It's a part of who you are.

Tikia: Absolutely. And if I don't, if you don't mind, with our family, we're all in, you'll see in the book, my family, my husband, my daughter, my son and myself. We're all different shades. None of us have the same shade of skin. And, you know, they say that black and brown people are the color of the rainbow because we really are. There are so many different shades, just in, in one particular family. And I think with Julian's albinism and the skin color, the good thing about it is that none of us, we, we talk about how daddy looks has a different shade of color than Julian and myself, and it's great that he knows that he's unique, but it's nothing wrong. It's just accepting it and moving on, you know? So he's not like the only person who looks different, you know?

Marissa: So how did you encourage some of these like self-advocacy skills and JAK as you started getting older? How did you encourage him to start explaining albinism? Did he become involved in writing the book at all?

Tikia: Well I encouraged him from an early age to be vocal and I would ask him questions, just because I wanted to know as a mom and I also wanted to give him the support around what he might need as it pertains to albinism.

So I would ask him, can you see this? Can you see that? Most of the time, it was really about what he could see, um, because that was the major part of albinism that at such a young age, he would be able to, kind of relate to me. And he spoke very clearly at an early age. Like I was telling someone I don't ever remember him going through a babbling stage, He started off with two-worded sentences. And so I've never, I could always understand what he's saying. So I would say, okay, you know, you need your sunblock and he may reply, repeat, you know, “need some block.” And this is when he was little. And sometimes he would say, “I need my glasses.” You know? Because I was a mom of two and my kids are 17 months apart. So life, when they were two and three, was extra, that was so busy for me. So sometimes I. You know, run out and forget something, but he would say “my hat, my glasses," you know, or whatever he needed.

And so when he went to school, you know, I would tell him, you know, make sure when you go outside, you know, have Ms. Sierra put on your sunblock, Remind her. And he was about three and a half maybe. Yeah. About three and a half at this time or four. And she said, you know, Julian reminded me to put on his sunblock.

And he had a second-grade teacher, and he was. And he was really into superheroes. And at this time he's seven. And so I know you said you started to shy away from your tools and things. And so did he! And so he didn't really want to use his tools. And so I spoke with his teacher and his teacher was like, I have an idea. He's like, I'm going to tell Julian, because he usually plays around with him and he calls him batman. The teacher would call Julian Batman. And he's like, you know, Batman has a utility belt, right? And he has all his tools and he's like, “man, this is what your tools are. You got all your tools. So, you know, when you need them, you just pull them out.” And, oh my gosh, he was so enrolled in that. He started telling me, “Mom, I've got my tools.”

So I just, you know, just want to tip my hat off to Mr. Packard. That's his name. And that just got to him. He’s in fourth grade now And, um, what else, what was the other, the second part of that question is asking if he helped with writing a book at all?

Marissa: Yes

Tikia: No, he didn't write it, but he helped me. He helped steer me or should I say guide me to where I am now. Because initially, the book was just in paper format. Like I literally. I wrote it up. Excuse me. I typed it up. I inserted pictures like Google slides or at the time it was PowerPoint. And I literally printed the pictures off. I stapled it on the side and each year I would ask his teachers, is it okay if I come in and read the book? And all of them were like, yes, please come in. Because they had no idea about albinism. And they wanted to make sure that they were doing whatever needed to be done, to protect him and make him feel like part of the class. So I would read to his class, I remember leaving my classroom of preschoolers, going over to his building, his class, reading that story, and then I'd go back. And that was like on my lunch break. And I think he was in kindergarten at the time.

And I was just like, oh my word, like, I need to put this in publishing! And then, with the push of diversity, equity, and inclusion. It just made sense that this book is in the hands of everyone who reads, you know, from teachers to parents, to children. And like I said, that was like the push to the public to make it, you know, to publicize this book. And I was just like, wow, I never thought I'd be where I am now. But. I am glad that I'm here and I'm glad that it's touching the hearts of so many and that it's appreciated. And then, the mission behind the book is coming to frutition.

Marissa: I'm sure that's amazing to go from writing it on paper and then now seeing it fully public. It must be so fulfilling for you to know that not only are you helping your son and your family and you're helping so many other people out there. You know, a lot of people struggle to find a concise way to explain what albinism is because there are so many misconceptions, there are many little gray areas with the condition. And I think, in your book, you do a great job summing that all up. So we're getting towards the end of the episode. I was going to ask you at this point, feel free to share wherever people can find the book. I know there are ebook formats for fellow ebook fans like myself, but then there are also some paperbacks. So talk about where people can get the book.

Tikia: Absolutely. You can find the book on Amazon and it's Kindle compatible. You can find it in Barnes and Noble. And, on Barnes and Noble, it's also in paperback and you can buy it on your nook. It's also on Amazon. Now. I found out just this weekend that it's on Amazon. I believe Amazon is paperback only, but it's still there. I also want to say. The print and the book, the actual paperback is friendly to those who have albinism or are visually impaired. I was very strategic about the color of the print, the size of the print, because I know that I want my son to be able to read his own book, as well as everyone else who has any type of visual impairment. Down the road, I will look into braille cause that's the only thing it's, it's not in braille right now, but, we'll see, we'll see where this is going. So those are the three places that you can find the book.

Marissa: And are there any ways to reach out if people want to connect with you, learn more about you, where can they find you online?

Tikia: I am at, oh gosh, I'm on Instagram and I'm also on Facebook and I'm on all under Tikia Kidd. And I'm also on Twitter.

Marissa: Awesome. Well, thank you so much for joining us today. I really appreciate hearing about raising a child with albinism and educating others. I think this will be really insightful, especially because I can't really speak to what that experience is like as a person of color. So I think it's great to shed light on what that's like. My mom didn't know I had albinism until I was six months old because I was just pink. There really is so much variety in how people find out about albinism and then how they share that with others. So thank you again

Well, everyone. Thank you so much for listening. I hope you enjoyed today's episode. I think these conversations between adults with albinism and parents are extremely important, so parents can learn more about our perspective and how we view the world as people with low vision. But then at the same time, I think it's important for us to appreciate all the work that our parents have done for us because in most cases they were our first advocates. Like I was saying in some social media posts about this episode, I was way too busy playing with the littlest pet shops as a child to even think about IEP or 504s or academic accommodations. And my mom really laid the foundation for me to advocate for myself.

And based on my conversation with Tikia, I am very confident that she's doing the same thing for JAK. So if you liked today's episode, make sure to subscribe to Legally Blonde & Blind on Spotify, Apple Podcasts, or anywhere else you listen to your shows. You can also stay up to date by following my social media pages, Legally Blonde & Blind on Facebook or @legallybb_ on Instagram.

Thank you all for listening. And I hope to SEE you soon!


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