Marissa: Throughout the first episodes of Legally Blonde & Blind, self-advocacy has been one of the biggest topics I have focused on, but what happens when you're in elementary school and you're far more concerned with trading Little's Pet Shops than advocating for your needs in an IEP meeting? And this mother's day special, I will be interviewing my number one advocate and supporter throughout my entire life, my mom. And today, we'll be talking about how parents can process a new diagnosis advocate for their child in IEP meetings, and help their child develop a more positive view of blindness. We'll also discuss how parents can educate those around them about their child's condition without oversharing, and also how they can respond to any rude or ignorant comment. I truly believe that my mother's dedication will inspire you all. And I hope you enjoy today's episode. Happy Mother’s Day!
Marissa: Welcome back to another episode of Legally Blonde & Blind. I am especially excited for today because I have a very special guest, my mother, Denise Nestle, also known as Mama Nissley.
Denise: Hello everyone.
Marissa: So we have a lot of different things that I want to talk about today. Everything you need to know about being a parent of a child who has albinism or is visually impaired or blind. So the first question I had was, you know, the story, and I know the story obviously, but I think it's a good place to start. So, how did you find out about my albinism?
Denise: Well, when I first saw you, my first thought was you had albinism, your dad's cousin had albinism. I had a friend growing up that had albinism. I wasn't really close with them, but they were in our neighborhood. And, but everyone told me you weren't, nobody really said anything. Everybody just wanted to come and see you in the hospital, Like random nurses that wanted to come to see the beautiful baby with blue eyes and platinum blonde hair. So at that point, I really kind of doubted myself thinking maybe I'm wrong. If the doctor didn't say anything, the nurses didn't say anything. Maybe you didn't have albinism.
Marissa: And it was because of my blue eyes, right? They said that I couldn't have albinism. If I had blue eyes.
Denise: Yes, one website that I looked up on said that you would have red eyes, not blue.
Marissa: My nystagmus started at about two months, right?
Denise: You were on the changing table and I noticed that your eyes were jiggling. So I called the doctor, made an appointment, and went in and she said that she said you might be blind or have albinism. She wasn't sure. And put us in touch with an ophthalmologist.
Marissa: Okay. So you went to the ophthalmologist in October, right? And that's when you found out about my diagnosis, correct? You said it was like the second that you walked in. Right? I think it's pretty obvious. Like if you know about albinism, to point it out, just because you know, the pale skin and the white hair, it's really obvious once you know about it.
Marissa: So like, how did you feel after my albinism diagnosis?
Denise: Initially, I was distraught. I was emotional. I had no idea what that meant for your life. How were you going to function? How well would you see? What would you be able to do? What would you not be able to do? Just everything in general, I was scared.
Marissa: I'm sure it's just a fear of the unknown, because like you knew some people have albinism, but you didn't really understand what it was like to have it.
Denise: Yeah, definitely.
Marissa: And do you have any advice for new parents with newly diagnosed children? This could be for anything but specifically albinism.
Denise: You have to do your research, look into anything and everything that's available to you to find out what you can about something that you are completely clueless to.
Marissa: Yeah. And what I think was really great about what you did after my diagnosis. You didn't allow yourself to dwell on it, but you didn't deny it either. You were like, “okay, what, what steps can I take to get Marissa the services she needs? Where can I find resources about albinism?” I think you took a lot of initiative in that regard.
Denise: I became determined. Once I got past being upset, I decided that I was going to take all my energy and focus on how I could help you. What did I need to do in order to help you achieve anything that you wanted to achieve?
Marissa: Yeah. And obviously, it's different now because there are so many more resources on the internet, like albinism Facebook groups, and NOAH’s website, but what kinds of resources did you use when you were trying to find out more about albinism?
Denise: I don't even think Facebook existed, but I could be wrong. I wasn't on it or on social media. So basically I just had to rely on the internet, different hospital websites, and Googling albinism. And then that led me to many different sites, the New Jersey Commission for the Blind, NOAH, things like that. And they were very, very helpful.
Marissa: Oh, okay. So you, so you were on Noah's website then too?
Marissa: Okay. And so how did you kind of navigate all of this information all at once without becoming overwhelmed?
Denise: I don't know, honestly. You gotta do what you gotta do. And it's just, once you become a mom, And then mom, with a child with a disability, you kind of change your mindset, I guess. It's not about, well, first of all, whenever you give birth, it's no longer about you. It's about your child. In this case, it was more important to me to make sure that I became educated so I could educate you. And I could also educate others as well. And just make the best of it. I would do everything I could to help you.
Marissa: And that's one thing I'd say that you did very well too when you were in the process of researching. This is like, I remember even from a very young age, you had told me, oh, “you have albinism or you have a visual impairment.” Like you gave me the language to talk about what I had rather than trying to hide it from me. And I think that was really empowering.
Denise: Yeah. I couldn't change it. So I had to have you accept it as well as I had to accept it and understand it.
Marissa: Yeah. And I, I really appreciate that because albinism for me is just like something that I've always had. It's just been a part of who I am, but I can completely understand, that for you and my dad, it was a totally new thing. And you had no idea about it beforehand. So you really did take on a lot.
Now I wanted to talk about school and how the process worked for getting accommodations. Initially from the state and then from my elementary school's administration. So what was that process like?
Denise: Well, for one, you were different, you tried things differently in a way that I think makes you you and more unique. You do everything in Marissa time. So you decided you didn't want to walk right away. You didn't want to do this right away or that right away. So I became alarmed and I reached out to early intervention, which was very helpful. That's when you're under three years old in the state of New Jersey, I can't speak for any other states. They came back to the house, did some evaluations, and you got PT, OT, and you had speech. And they put me in touch with the New Jersey Commission for the Blind and Visually Impaired, which ones they came in, you had a vision teacher or a specialist who would come in and help give us ideas of things that could help you. And they also were very, very helpful in navigating when you turned three, when you went into the school district and when we had to meet with their CST team.
Marissa: Yeah. So what was that like once you started entering the IEP process? When I was in elementary school, how was it interacting with my teachers? And then how was it with my school's administration?
Denise: It was intimidating. At first, you are sitting in a room with probably four to five other people that are staring at you, and you're trying to discuss with them your daughter's condition, what it is and how we can make things better. Albinism is not as common as in other IEP situations. So coming up with goals and reports and progress and all that, it's not as typical as other IEP. So it was kind of almost harder in a way, I guess because it was unfamiliar territory for them.
Marissa: Yeah. So the teachers and the administration didn't have as much experience working with visually impaired children, they were more used to behavioral or learning disabilities. What was it like responding to any kind of pushback? Because I know there were some instances in which the school was trying to like, for example, take me off an IEP plan.
Denise: Yes. Well, it was always unfortunately a fight in the beginning. I think, for certain things, that you deserved to be on an equal playing field as your other peers to learn. For example, when you were in first grade, they put you in a classroom, the only first-grade classroom that did not have a smart board. And for a visually impaired child, a smart board is a benefit.
Marissa: I went up to the superintendent and I asked him, I was like, “I want a smart board.”
Denise: Yes you did. And I fought that year. I fought with them. I met with many different people. I met with the superintendent who did not understand completely why you needed this. Eventually, you did get the smart board in your classroom, but it was an uphill battle. And for some parents who don't have the time, I was fortunate that I was able to stay home and be a full-time mom, but some parents obviously don't have that same luxury. And it consumes a lot of your time. It's research, it's facts. It's meeting with people, it's pushing it's, you know, it was my full-time job.
Marissa: 100%. We were even talking about this as I was going through the process for SSI. It's like, it's often a fight and they don't want you to get these resources, especially if it requires a financial commitment. So they often just want you to give up, but it really requires a lot of persistence. Fortunately, you were in a position where you could devote your full time and energy to that. But unfortunately, a lot of parents aren't and it poses a lot of difficulties for getting accommodations because schools and government agencies are often very slow to move.
Denise: Exactly. And it all comes down unfortunately to money. The school district doesn't have to spend it, then they don't want to.
Marissa: One of the things I was thinking about too, was the one time in fifth grade when they wanted to take me off the IEP plan. Could you just briefly explain the difference between like the IEP and the 504 and why you wanted to keep me on the IEP?
Denise: The IEP is broader, I guess than the 504 where we could list all your accommodations that are needed. Like extra time sitting away from the windows, stuff like that. And. Unfortunately, sometimes 504s aren't completely followed through in certain cases. And I was just determined that I wanted you to have the IEP. Fifth grade was your last year of a single classroom in the school district and starting sixth grade, you switched classes, meaning you had a different social studies teacher, a different math teacher, a different language arts teacher, et cetera. So we're not gonna only have to deal or interact with one teacher like we did in elementary school. That was very beneficial because they got to know you. They saw you every day, all day. They know that they should put the blinds down or they should put you here. They should put you there. But going into middle school, you were going to encounter four brand new teachers and those teachers had to get to know you, what works best for you and how to help. And that year, you were up for a re-evaluation and they were telling me in advance that they were going to push for the 504. So I did much research on the ADA.
Marissa: You printed it out too and brought it to the meeting. Didn't you?
Denise I did print it out and about every right that you were supposed to get. And I just. I think for 15 minutes I stood up and ranted off different laws and then, just stopped and I cried. I cried because I think it was anger. I was so angry that they were trying to take away your right to have an equal opportunity to learn. It was funny. You had a male teacher that year. I don't know if he's ever seen a woman cry like that at an IEP. And he was just trying to, like, he was like, patting you on the shoulder. He was like, “it's okay. It's okay.” And, as soon as I got done stating all that, they signed on your IEP.
Marissa: Yes. I had an IEP all throughout middle school and all throughout high school. I think it's an important thing to know. With the IEP, the enforcement mechanisms are a lot stronger, so it's easier to follow through. So I think that's why it was in part such a big deal though. The idea of switching to middle school with multiple teachers brings me to the next topic I wanted to talk about, which was the teacher meetings. So starting, I believe it was in fifth grade, wasn't it? Or sixth grade? Sixth grade. Sixth grade, I believe. I would have meetings with all of my teachers at the beginning of the year where I would tell them about the different technologies I used and different things I would need in the classroom. And I think it was a great opportunity for me to learn how to communicate those needs. I also started attending IEP meetings around the time, like my own IEP meetings, because I thought if there are all these people in this room talking about me. I might as well be there. So my question for you is how do you teach your child the skills to advocate for themselves? Because during elementary school, You're my number one advocate. But as I'm getting older, like it's moving, it's like handing the process from you to me. So what are some tips you have for that?
Denise: I don't know how you became the advocate that you've become. I was very timid. I would say more now. I got the name Mama Nissley because you don't mess with my kid and you don't mess with my kids’ friends. You were always just a very good self-advocate, I believe. And you were always very involved with everything because I always told you that there was nothing you could not do except the bus driver, or maybe the airplane pilot.
Marissa: I was talking about that in one of my episodes.
Denise: But I wanted you to know that whatever you could put your mind to, you can do it. A visual impairment doesn't define you. It's something that you have. And you have to learn how to accommodate or deal with it. And you always were very determined, I think from the beginning to not ask for help. And I think your stubbornness actually made you the advocate that you are today/
Marissa: Yes, When I was thinking about, like, for this episode, some of the things that I thought of that you did that helped was first, like I was saying earlier, giving me the language to talk about what I needed telling me about the different things that I use, what albinism is, how it affects me, giving me the words to express what I need. And then also just set a very strong example. Like we were talking about. You're very determined. I think you were in positions where a lot of parents would have given up or been like, “oh, a 504 is fine.” Or, ?oh, it's okay. If they don't really get this from the service from the state.” Though, you persisted. And your example and the communication skills you taught me as well as being assertive, but not aggressive were very helpful.
Marissa: And then that goes into my next point. We were talking a little bit about this before. I can't be a bus driver or an airplane pilot, but I can do everything else. How do you think you can help a child who is blind or visually impaired develop a more positive view of their blindness? We talk about that a lot on the show. How blindness isn't necessarily something that has to be negative. It often is perceived as negative, especially when you first received the diagnosis, just because of that fear of the unknown. How do you work to help your child feel more positively about it and not dwell on it?
Denise: Well, like you said, be honest with them. Explain to them, and show them how they can do things in a different way. And. I think a big key is to educate the people around you. But like your peers, I don't know if you remember. I think it was first grade too, that we had the visual instructor come in, we read a book about eyes, and then we had the kids make the glasses with wax paper.
Marissa: Yeah. So they can have blurry vision. I remember I wanted to put them on and they were like, “oh no, you don't need to.” And I was like, “I want to wear the blurry glasses.”
Denise: Yes. So that gave your classmates an idea of how you saw so that if you were out on the playground, maybe they called your name and, or you always had the one friend with the pink jacket.
Marissa: And that's how I would always find her, find her with a pink jacket.
Denise: And then she switched her jacket from spring to summer or something. And you couldn't find her.
Marissa: Yeah. I remember my friend Alexa. She would help me through the hallway like she would tell me whenever there was a step and she still does that to this day. And I think a lot of that started because you put in those efforts like to have education about albinism and about visual impairments in general, which, you know, I know a lot of people with disabilities experience instances of bullying. And I was very lucky in the regard that I didn't have that many issues besides the middle school, you know, middle school, boys and girls are kind of evil, but besides that, I had a largely positive experience. And I think that I think that's because you didn't shy away from it. You didn't try to hide it from other people. It's nothing to hide from. You, you were willing to educate them and you brought in it was the commission that did that, right?
Denise: Yeah, it was your vision teacher.
Marissa: You were willing to bring in outside resources and help educate everyone around me about my albinism. All of those things really do contribute to a positive mindset. And obviously, you didn't have social media when I first was diagnosed, but as I've gotten older Facebook, Instagram, and Twitter have all become more popular and they're on one hand like we were talking about before, they're a great tool for finding a community, finding other people with albinism, like resources for parents. I know there's an albinism community Facebook group. That's really great.
But there's also a line where it's oversharing. It's interesting. You never really posted about my albinism at all. And I never really had spoken about it publicly on social media until I had started the podcast. But I know some parents do like to post about it to spread awareness or participate in a fundraiser. So how do you think parents can share their experiences about their child's albinism on social media without oversharing?
Denise: I think it's up to the child as well. A parent should always ask permission whether the child is 6 years old or 16 or 26 years old, that they are on board with it. Some people are comfortable and accept it like you are, but there are some people that aren't as comfortable. So just making sure that they're on board is the number one thing. And number two, if you have questions, that's okay to post. But I don't think, like I said, having a visual impairment or albinism, doesn't define who you are. If I post anything on Facebook, it's your accomplishments or your going away or your prom pictures or something like that.
Marissa: I don't always see where it would benefit a child. Awareness is good, but if it's not being done with the consent of the child, It's almost like the parent is dominating the narrative and taking over the conversation when it should really be about the child who is visually impaired. If someone wants to do something like a Noah fundraiser or something and their child's okay with it, like maybe post a video that the kid made explaining what albinism is or a quote from them, have them involved in the conversation and give them a voice. I think there's definitely a space where parents should ask questions about albinism and like how it affects them mentally and emotionally. But I don't think that should be the whole story you're telling the public. It shouldn't always be. It shouldn't always be about you. Do you know what I mean?
Denise: Exactly. Because I don't have albinism. I don't know how it is. I can't speak for you.
Marissa: Exactly. I think you've always done a good job of that because I'm obviously very comfortable with sharing my albinism and my blindness now, since I have a podcast, but when I was in middle school, there was a time when I didn't want to talk about it at all. I didn't want to mention it in my classrooms or especially on social media. And I'm very, I'm very thankful that you respected that. And didn't, you know, buy the, “my child has albinism” t-shirt right away. I would be fine with it now, but I wasn't at the time. And there's nothing wrong with the t-shirt, but it's about, it's all about consent and what the child wants and a happy balance.
Denise: Yes. A happy balance. Awareness but not oversharing.
Marissa: And finally, one of the things I wanted to ask you too, is I guess this goes in line with social media. Parents can be very judgemental as I'm sure you know. I think when it comes to children, people are so willing to stand up for them and make sure they're getting the best that they deserve. But there is a line where parents can insert unsolicited advice. I like one instance in particular that comes to mind to me as we were at, I think we were at a mattress store or something. And, one guy was like, “she needs glasses.”
Denise: Oh yeah. I remember that.
Marissa: And you were like “the glasses don't help her.” And he was like, “she's staring too close with the phone.” So how do you handle situations where parents make comments like that that are rude or, or just, you know, judgmental?
Denise: I would say in the beginning, I wasn't as good as I am. Now. I can remember being in a Christmas store. You were little and you were with dad and you were kind of ahead of us or ahead of me. And there was an older couple who was talking about you and they were kind of being really rude about it and I lost it and I turned to them and I said, “that's my daughter. If you have any questions, please feel free to ask me now.” Of course, they were mortified, but as grown adults, they should know better not to discuss it.
So I became more patient and I realized that coming back as rude as they were being not the answer. If they are young, I'll explain it to them. If they're older, I just say, do you have a question? Because I think as an adult, that's what you should do. Because they know what they're doing is wrong.
Marissa: Yes. When you, when you call it out like that, you don't have to make a scene or anything like that, but that tells them I heard you and I'm willing to hold you accountable for what you said. Another instance, too. I was talking about this. I forget what episode I remember the orthodontist with the, with the lady who was like, “your eyes are giving me a headache. “ And I'm like, “oh, well, I'm sorry that I'm giving you a headache. It must be so hard being you.”
One of the things, this is a podcast. So you can't see my mom, but Mama Nissley is very good at giving death stares. So if you mess with mama, You will face the wrath.
Denise: Yes. Don't mess with my girl.
Marissa: Well, thank you so much for doing this with me. I think a lot of parents will appreciate having the parent's perspective because I don't know what it's like to be a parent for one. And I don't know what it's like not to have albinism or what it's like to have a child with albinism and not have that personal experience. So I think it's great to hear your perspective. Is there anything else you want to add or you want to say to any parent of a child with visual impairment or albinism?
Denise: It's okay to be scared, but don't dwell on it. Not every kid with albinism is going to have the same experience in life. So you can't, nobody can tell you in black and white, what life is going to be like. The only thing I can say as a parent is to be there for your child. Be educated. And just be willing to give them the equal opportunity they need to succeed in life.
Marisa: Well, everyone, this has been one of my favorite episodes to create and record. I hope all of you can take away something meaningful from our conversation. If you liked this episode and you want to hear more, make sure to subscribe to Legally Blonde & Blind on Spotify, Apple podcasts, or wherever you listen to your podcasts. You can also stay updated by following my Facebook page and my Instagram account @legallybb_, where I announced new episode topics and releases.
Thank you all for listening. And I hope to SEE you all soon!