On this episode of Change Makers, hear how parents, and education professionals advocate for their children, in school and in public. They’ll share their experiences and what they’ve learned on this journey.
Podcast Participants
Additional Links
On this episode of Change Makers, hear how parents, and education professionals advocate for their children, in school and in public. They’ll share their experiences and what they’ve learned on this journey.
Podcast Participants
Additional Links
<silence> Welcome to Change Makers , a podcast from APH. We're talking to people from around the world who are creating positive change in the lives of people who are blind or have low vision. Here's your host.
Sara Brown:Hello and welcome to Change Makers. I'm APH's Public Relations Manager, Sara Brown . And on today's podcast, hear a round table discussion from parents of children who are blind or low vision. Hear how they've advocated for their children in school and in public. They'll share their experiences and what they've learned on their journey. Hello, Melisa Matthews, Krista Reid, Angel Webb, Tiffany Buzzard, and Amy Shephard. And welcome to Change Makers.
Melisa Matthews:I'm Melisa. Thanks so much for having us this evening.
Amy Shephard:Hi, this is Amy Shephard. I'm thrilled to be here with all of you.
Tiffany Buzzard:Hi everyone, my name's Tiffany . Thanks so much for having me.
Krista Reid:Hi, my name is K rista. Thank you for having me tonight.
Angel Webb:Hi, my name's Angel Webb and I look forward to , um, participating. Thank you so much.
Sara Brown:Wonderful. Well, thank you all so much for coming on again. Since this topic is about advocating for your child, would you just like to introduce yourself and share how you became connected with the APH FamilyConnect Advisory Board? Melisa, do you wanna start?
Melisa Matthews:Absolutely. I'm Melisa Matthews, and I am the Digital Content Manager for FamilyConnect. I'm a parent of two children with Albinism, so I work for APH and , um, have had the privilege to gather some amazing parents and advocates and professionals to create the board that we have.
Sara Brown:What about you, Tiffany?
Tiffany Buzzard:Hi, this is , um, I'm Tiffany Buzzard and , um, my daughter , uh, Brielle, she's eight years old, and Brielle was , uh, born blind due to a rare eye condition called Leber congenital amaurosis. Um, you know, eight years ago I didn't know anything about blindness. Uh , Brielle was the first blind person I'd ever met, and I knew I had a lot to learn, so I made it my mission to learn how to best support Brielle and her needs. Um, over the last eight years, I have built a strong support system for our family and one of those being the APH Parent Advisory Board Committee. In my journey so far, I've learned so much from other parents, you know, raising children that are also blind. And thanks to the APH Advisory Board, I have been able to share my story and experiences in hopes to also help other families.
Sara Brown:Great. Thank you. Krista , what about you?
Krista Reid:Hi, this is Krista . I actually was one of those parents in the beginning. Um, my son Bryson is 12 now , and he has a genetic mutation, dominant optic atrophy , um, where he is losing his vision. I was one of those parents that realized I didn't know the right questions to ask to get my son the right help that he needed. And the more questions I started asking, the more people I started meeting. And then I got to meet Melisa , um, as I was advocating for my son. Um, and she then helped me connect with APH and all of the great things, honestly, talking to other people and other parents, you learn so much more because you don't know the right questions, you don't know all the answers, no matter how long you've been in this situation. And no matter how long you've been advocating for your child, you're still learning more every day .
Sara Brown:Amy, what about you?
Amy Shephard:Hi. Okay, thanks Sara. Um , I'm Amy Shephard. I have a son who's almost 24 now, and he's legally blind. And I'm also the parent liaison for the Michigan Department of Education Low Incidence Outreach. And in that role, I'm constantly collaborating with others to provide educational and community resources as well as opportunities for families to engage with one another. So last spring I attended one of Melisa's APH Zoom events for families, and I liked that they were providing this type of outlet for families to support each other through conversation. So I , it was pretty soon after a week or two after, maybe a month after I reached out to Melisa to find out more about the FamilyConnect Advisory Boards. And so here I am.
Sara Brown:All right . And Angel.
Angel Webb:Hi. So , uh, our son Rusty is 16 years old, and he has CVI also known as Cortical Vision Impairment. Uh, we have navigated the public school system in Texas for 10 years and , um, advocating for , uh, vision services in the public school system, and Texas has definitely shown to have , um, its challenges. We have , um, successfully received three settlements and , um, uh, successful outcome in a due process hearing , uh, last year. So , um, we were lucky enough through the advocate that has represented our son to be introduced to Melisa, who , um, invited me to participate in the APH Parent Advisory Board. And , um, it's been a pleasure and a continual learning experience. So we're excited to be on this journey with each member.
Sara Brown:Wonderful. Thank you all so much for sharing your story and your background. Talk about what advocacy means to you. What does that mean for you?
Amy Shephard:This is Amy. I'll, I'll go first on this one. It's near and dear to my heart. So for me, when I think about advocacy, I always think about starting with knowing your values and standing up for your beliefs. It involves serving the needs of others and taking the lead when it's necessary. And most importantly, I think it involves listening and collaborating with others to create positive change. And at certain times throughout the years, for me, it has meant taking action to ensure equal access in our schools and sometimes in our community. But recently, I've embraced more of an ally role, which involves a lot of listening and providing resources to others as they navigate obstacles along their journeys.
Krista Reid:This is Krista . I honestly have spoken to an another individual today, and it brought a different light to me about advocacy because we're having a discussion about even the people between the educational, you know, the educational providers and the parents. There seems to be a lot of disconnect and a lot of parents that don't have the right questions to ask. So we do not just advocate for our child, but we're teaching the school districts who, yes, they have a teaching license. Yes, they are, you know, different specialists and whatever they're teaching. My son's in middle school, so they all have different criteria, but none of them are specified in low vision. And teaching them the difference between what it takes to teach a child who's low vision or blind , and teaching your child that they have an end goal and their end goal is to be an active member of society. And this is the step that they have to take because they know there are more challenges in their life. So, speaking up and even asking the question, "what could we do to make this better?" "How could this be attainable for me?" Um, in all aspects, but looking at it as it's not "us versus them," which seems to be a lot of the problem with our educational system. It seems to always, when we're at the IEP table, it always looks like "us versus them ," uh, at least the situations I've been in after due process. But more of a, it's our chance to educate the educators on how to do their, their due diligence for equal opportunity for our children .
Sara Brown:Anybody else wanna share?
Tiffany Buzzard:This is Tiffany. Um, for me, advocacy is, has been a process. Um, you know, as parents, when we first find out our child has a disability, we're in shock and grieving. You know, we don't, I didn't know there were laws or, you know, I didn't, I didn't know what the laws were and I'd never heard of an IEP meeting or, you know, I didn't know what Brielle's education would look like. Um, you know, and then over time I think you just kind of turn that sadness and rollercoaster of emotions into a positive search for information and solutions to problems that we face. Um, becoming an advocate means really becoming an expert and learning all that you can about your child's disability and their unique needs, and then sharing that knowledge with others. Um, and you know, in , in my journey , um, in my advocacy journey, I've learned to always ask questions and find answers and collaborate and really communicate with others and building a really strong support system so that you're not advocating alone.
Angel Webb:That's so good. Tiffany <laugh> , this is Angel. I like that about not being alone. 'cause so often we can all feel alone in this journey , um, of advocacy. So I agree on that note that it's always about doing what's right for the student, and , um, providing resources, collaborating with , uh, educators, staff and continual, continuing to educate myself , um, you know, and meeting other parents and caregivers and, and one of the key things we did in our school district was founded the , uh, Special Education PTA. So it's a great resource and unique because we actually are one Special Education PTA that represents all 45 campuses in our school district . So it's a great way to , um, get out there and, and meet other parents, other caregivers, other educators and teachers throughout our school district and collaborate and work together. But, you know, I also try when we talk about advocating and educating to remind myself daily that if I wasn't in this walk in life, then there's so much that I wouldn't know, you know? And , and so I try to remember that every time I'm speaking with someone that this isn't their walk in life and they don't, might not know what a cortical vision impairment is. It , it's unique because it's not , um, an ocular vision impairment, but it's a brain-based vision impairment. So there's , um, so it's funny that I think each of us have used the word collaboration in addition to advocacy. So it's, it's definitely , um, a tight rope that I think we all walk and try to find balance daily.
Sara Brown:Now, being a parent, as you all are, it requires you to model advocacy skills, but also to let your child try and to learn this skill too. And I'm sure when you watch your child try to advocate for themselves, you're watching and you're hoping that they don't get discouraged and that they actually, I'm sure there's that mother's intuition and that mother, you're holding your breath. Can you talk about how you model this for your child so they can learn?
Amy Shephard:This is Amy. So my background was in elementary education, and I knew how important self-advocacy was going to be for my son, and that it would, that he would need to be able to accept himself in the unique ways that he experienced the world, that he would need to be proud of his own strengths and his abilities, and that he would have to have the courage to believe in himself in order to develop those skills. So one of the things that I did really early on that I think was so important was we became very actively involved in our blind community, where we ended up having the opportunity to get to know a lot of blind adults, who then over the years, became my son's mentors and are now close friends. And we are also really lucky to be able to connect with other families. And I think both , um, Tiffany and Angel have already mentioned how important that family connection is and these experiences, they helped me to break down all of those stereotypes about blindness that I had grown up with because I didn't know anybody growing up who was blind. And as a teacher, I never had somebody in my classroom who was blind or visually impaired. So that enabled me to talk to my son about our blind friends who were successful and happy and independent or perhaps who were struggling and who are looking for help and support. And so, you know, I think that's what enabled me to really kind of start that self-advocacy and , and , um, model, like the different words, how we talked about blindness, how we talked about his visual impairment and , um, how, and it enabled me to like teach him that his visual impairment was really just only one of the many characteristics that made him who he was. And I think that was a really important start for his advocacy journey for himself.
Krista Reid:This is Krista . I definitely agree that, you know, I push with my son that his vision impairment is not ever going to hold him back. I don't want that to ever be a deciding factor of, "can my son play baseball?" Yep . "Should he be a catcher?" No, probably not. But he is because that's what he wants to do. So we figure out a way to do it. And I think with him, the advocacy really started with sports. And then he grew more confident in being able to know what was available to him resource-wise to use at school and be able to ask for, "Hey, this isn't working. Can I have this device?" Or, "I would rather have this paper because I can see it better." Or "this font works better." It's more trying to show him, these are your tools, these are what you know, what they're used for and how they can benefit you. But if there's something that you see, hey, "I wanna do this and this is something I want in my life," then he has to know how to speak up or nobody will be able to help him navigate that path.
Angel Webb:Hi, this is Angel. I , uh, you know, as each of us continue to , uh, travel and attend seminars, and I was , uh, at one this summer, my son, you know, not only has a vision impairment, but he also uses an a, a C device. So we call it his talker. And this , uh, speech pathologist opened up her seminar and said, first thing, write this down. I want every one of you to go back and add this to your child's talker. I can understand everything you're saying, you know, because when you have a vision impairment and you don't talk like everyone else and rely on a communication device, I think that , um, that was one of the best additions that we did because it can sure shut down a conversation or draw attention , um, to Rusty. If somebody is talking as if he is not present for the conversation and he pipes up and says, I understand everything you're saying, you know, it , it's keeping everyone cognizant. I also think , um, teaching him to , um, communicate, obviously modeling , um, the words or , or , you know, if if he's working on something at school, it's continually modeling with his AAC talker. We have to , um, do that so that we're modeling in the same way that and manner that he communicates and making sure that he also has a communication partner at school that does that as well. But , um, that's one of the best adv advocacy tools that , um, I feel like we've added for him is , uh, just that one phrase, that one sentence on his talker this year.
Sara Brown:Anybody else?
Tiffany Buzzard:This is Tiffany. And, you know, I think , um, looking back , um, advocating for Brielle I think really happened back when she was just a baby, you know , um, and growing into a toddler , you know, we took her of course to a lot of parks and , um, you know, we never, we have always made a conscious effort to really treat Brielle , um, no different than if she had been cited. And, you know, we showed her how to go down the slides and how to pump her little legs on the swing and hang from the hanging bars. And, you know, we would all, you know, encounter a lot of parents or other kids who were interested and, you know, taking advantage of those opportunities, even from when Brielle was really young to just talk about blindness and educate others about blindness and, you know, and do it in a positive way, I think , um, you know, really helped Brielle in, in her advocating for herself now because, you know, Brielle's still young. She is only eight, but you know, now she's able to talk to her peers about her blindness and why she uses a cane or why she reads braille. Um, you know, 'cause to a lot of kids blindness is, you know, they've never encountered it. And so they don't know. And just modeling, talking about blindness for all those years, and now seeing her just, you know, if there's a child that we encounter in public and I see them looking at her cane and staring, I'll usually take that opportunity and tell Brielle, you know, oh, "Brielle, there's a , a little boy or a little girl who's looking at your cane, I think they're interested and let's go say hi." And so she can just confidently tell people about her cane and that she uses it to see, because she's blind and it's just normal for her. And , um, you know, I'm , I'm thankful for that she has been able to , um, just watch and learn. And you know, now she is eight years old and so the advocating looks much different because now we advocate in a school setting. And my husband and I, we do a lot of the advocating right now, but , um, I'm hoping that she is watching and learning, learning and eventually we'll take the lead.
Sara Brown:So when did you shift from modeling advocacy skills to stepping back and letting your child take the lead?
Angel Webb:I have, this is Angel. I have a funny little story about this. 'cause when we talk about not just advocating for our child , um, or the one-on-one communication partner or the professional advocate that sits at the IEP table for us , the teachers, all of the staff, but sometimes your child's best advocate can be the classmates and the students. And I think that that was something that we worked on right in the very beginning. You know, going to Chuck E Cheese 9:00 AM birthday parties when we wanted to sleep in <laugh>. So I think all parents can agree with that, but , um, really making sure that , um, our child was participating in all of the extracurricular activities that we could so that he formed a relationship not just with his classmates, but also with the classmates' families. And I just have a real quick funny little story to tell y'all. So we, I was of course chaperoning a , um, a trip to the Moody Gardens, and when I arrived, parents couldn't ride on the school bus. So, you know, I rushed to get there 'cause I got caught at all the lights because I wasn't part of the police escort. So I get there, I park, I rush up, and of course it's a bunch of little kids and they're excited and the noise is deafening and they've got everybody in single file lines waiting to go in their appropriate door with their tour tour guide. And so I walk up and stand behind my own son, and , uh, he's covering his ears and, and I can tell that, you know, it's a sensory issue. And so the little boy in front of him turns around and kind of rolls his eyes. And so I smile and feel like I need to offer an explanation. So I said, "I think he can't hear." And obviously I didn't mean that it did anyways, but let me just tell you what happens next. So this little boy says, "huh, huh. He can too. He can too hear. He can't see. I mean, he can, but he can't. It's like this." And I mean , this is like a 7-year-old, and he is like, "I mean, I don't know , it's hard for me to explain, but he can talk. He, he has that machine. Talk to him, he'll tell you." And so at this point, I obviously wanna meet this brilliant little advocate for my son, but I also feel that I need to introduce myself as Rusty's mom, which I did. And that kid looked at me with like, such disgust, like, why am I having to explain Rusty's vision to you when you're his mother <laugh>? So that, that little boy has grown up and done all kinds of volunteer stuff with Rusty and , and their circle of friends. But I always chuckle and, and revisit that conversation with their parents when we get together. But I think that that's an important tool , um, to remember that sometimes our kids' classmates can be their best advocates.
Sara Brown:All right . Amy, what about you?
Amy Shephard:Well, I just gotta say that was such a great story and it's such a powerful reminder. Um, I had a scenario in one of my classrooms not too long ago where something very similar happened. And , um, my, this young student was given a piece of , um, assistive technology for the first time, which enabled him to view the board. And the students got started all jumped up and started dancing. And they were like, "he can see it! He can see it. You got it." And it was just, it was so powerful, just the support , um, from the peers . So that is really important to remember. And you know, I will say, I think , um, Tiffany mentioned earlier that it's all a process and, you know , um, at every different age they were different. We were advocating for different types of skills and, and for different types of things. And , um, you know, now that he's almost 24, it's really the hardest thing for me to do to back off. Like, I, I , like, I know I need to step back and, but it's so hard because, you know, I was his mama bear for so long and I was his primary advocate for all those years. And so, you know , now it's just hard . It's just , uh, it's just really hard. It's a big change. And , um, you know, all those years I worked with him to try to, you know, be assertive and , um, get his needs taken care of. But at a certain point, for every one of those momentous steps he had to struggle. And at some point he had to, you know, figure it out for himself and which meant that I had to watch him fail. And , um, you know, that was always really hard. Um, and I had to practice just being there , um, to love him during those hard times. So these days , um, when he is looking to talk, I really just try to do my best to listen to him. And if he does ask for help, I try to point him in the right direction. And ensure that you've got this and you know that I'm there for him if he needs me.
Sara Brown:I just heard, it sounds like you really, really, really, really love your son and well , yes, he might be 24, but he's your baby and you're ready to step in when he can't. And yeah, that's all I heard.
Krista Reid:This is Krista , I started making it at IEP meetings. How we talk about, I wanted advocacy goals. I wanted goals for the school to be looking for him to advocate more for himself. I wanted them to give him more chances to have that ability to speak up about what his needs were. But now that he is a little older and we have gotten him advocating for himself a lot more, it's more of that you step back as a parent and you let it ride how he's advocating for himself. And in the moments when he is struggling, it's one of those conversations that you have, are we venting about the problem or are you coming to me to help? Because I don't wanna overstep, especially now that we're in that pre-teen attitude with him, that you still want him to have that ability to solely rely on himself, but know that you are there as a parent to catch him when and if he does need more assistance, which we have had occurrences of, but lately, he's like, "no, mom, I got it. I got it." I knew I needed this, and they gave it to me . So as a parent, it's hard to step back, but it's an emotional moment when your child says, no, I know what I need and I know what I need everybody else to understand about what I have, but that isn't just who I am. And I am able to do that. And as a parent, you can look at it as I know that my child is gonna have a successful future regardless of what his vision is. It can decrease over the years. It could stay stable. But no matter what, he knows that he has a strong support system behind him and feels confident in his own ability to be able to do that himself. And I think this has really been our transitional year with him.
Sara Brown:I swear, they're babies one day, and young and young preteens the next, and 24 year-olds the next day. My goodness. But you all sound like you're equipping them with the right tools. So, so kudos moms, that's awesome to hear. It's really, it's really heartwarming to know you're setting them up so they can, they can stand on their own. Now, what are two ways you have found your child successful in their journey to be their own advocate?
Amy Shephard:This is Amy. When my son was in third grade, we, we started creating a student report for his IEP. And it started because the class was doing a student of the week , um, project. And every student in the class was student of the week and had to create this , um, uh, biography. And so we created this book about him, the story, and in the first couple years we had it just in a book format with braille and texts and photos. And he shared information about his family and what he liked to do outside of school. He included his strengths and personality traits and what he wanted to be when he grew up. And we also included, and I think this was like the really important piece that we snuck in there, we also included information about his visual impairment and what kind of accommodations he needed at school. And it gave us a chance to explain what those accommodations were and how he used them and why he had them. And, you know, so he presented that to his entire class. And, you know, again, this was that, that piece about providing him with the language, the appropriate words , um, age appropriate words. He was only in third grade at that time. So in , in , in order for him to be able to talk about his visual impairment and the tools that he was using and how he , um, was able to access the world around him, and eventually that storybook project, that little biography morphed into a PowerPoint, which he then used every year up until about ninth grade to start off the IEP meeting. And I loved it because it just put him and his strengths and all the great things that he did outside of school, like front and center. When we walked into that IEP room just reminded everybody that he was just more than, you know, the kid that has the visual impairment. And by the time he was in high school , um, he was leading our IEPs I say are , 'cause I was always there too. He was leading his IEPs and um, with an agenda. So he was in charge of the IEP he went down the agenda and everybody on the team followed along. And there was such an empowering , um, aspect for him because it was all about him and everybody was there for him and for him to be the one that was in charge and leading it was a really great learning experience. And I'm sure that , um, as he went on to college, all of these skills , uh, just really benefited him because once he did go off to college, he had, it was completely up to him to ask for the accommodations. There wasn't anybody who was going to check in and, you know, make sure that he had them, he had to , um, advocate for himself and, and to get what he needed. And I know he's still using those types of skills now , um, in his work environment as well .
Sara Brown:Anybody else?
Melisa Matthews:I will fill the gap . This is Melisa. Um, I think two things for my daughter was, again, going back to a little bit of the modeling, but allowing her to know that she doesn't have to answer the questions if she's uncomfortable. So , um, being quiet and understanding the question that's coming through, if it's rude or disrespectful, she doesn't have to give an answer , um, especially out in the community. And I think the other part is when those questions or situations arose, really modeling how , um, to help her through those struggling questions, those hard questions that are asked of people , um, because they don't know better know any better, or they just are unsure and they're trying to learn and therefore she may have been offended, but allowing her to kind of try the words and then give her some better words to use or afterwards. Um, but I think for her, the biggest place that she has felt very successful in advocating is gymnastics. That's a space that she absolutely loves. And her coaches will do almost anything to help make that sport accessible. So they have an open line of communication. Um, it's definitely been some trial and errors, but again, she is , knows that she's trusted , um, with coaches that love her and want her to be successful. So..
Krista Reid:This is Krista , I just kind of wanna add in. I think I can't thank Melisa's daughter enough for teaching my son how to be able to advocate for himself and feel comfortable in his own skin. And I, I really think getting to know her helped him see that I am not alone in this. Yes, we can tell our children, you know, we're there for you and we can be there. Their falling net if they need it, but to know that they have other people that have similar vision impairment , um, to them and similar needs, and seeing that another child role modeling that for them, I think was even more beneficial than him watching me and having him around more people that have different disabilities, regardless if it's vision impairment or , um, blindness, but knowing that everybody advocates for themselves, not just those with a vision impairment.
Amy Shephard:This is Amy, I'm gonna piggyback onto that because I think it's so powerful that, you know, the group dynamic when you, when you put a bunch of people together, how , um, how you can create change. And we had a scenario , um, when my son was in high school, he took the city bus to school and the crosswalk , um, where the bus stop was, was the wasn't accessible. The crosswalk signals were not working. Um, there were problems with the crosswalk. It was a very complex intersection. And so, you know, I helped him connect with the , the right people to get the conversation started. And he mentioned it to one of his, one of these friends , uh, one of these mentors , um, who we'd known for years who was blind. And all of a sudden it became, well, we should get so-and-so involved and let's get so-and-So, and we ended up having a group of 10 local people with visual impairments who all then petitioned the city, wrote letters at individual intersections. And five years later there's audible pedestrian signals at each one of those intersections. So I mean, the power of, you know, working together and , um, it's just, it's so incredible what can happen.
Angel Webb:That's such a good point. This is Angel. And I will say that , um, my, my greatest hope and dream is that hopefully by our advocacy that we're paving a way for students for years to come, just like the moms and dads and caregivers did , um, 30 years ago for our own children. Um, you know, but I won't sugarcoat it. I'll be honest that this has been a 10 year battle and it's, you know, a constant fight every day we get up and feel like we're pushing the boulder up the hill, and it shouldn't be that way. And when we talk about blindness and vision impairment, you know, one of the, the battles is that they always talk about low incidents . And , um, with CVI Cortical Vision Impairment, they now estimate that one in 30 students have Cortical Vision Impairment, which would mean that there's almost one in every classroom. So, you know, that is not low incidents . And so I hope that , um, as more people are diagnosed and more people are educated about low vision, that hopefully students with legal blindness and vision impairments will get more attention and get the services and accommodations that, that they're deserved in their public school system.
Sara Brown:Now, what's one thing you wish society knew or understood better as you advocate for your child outside of the home?
Amy Shephard:This is Amy, and this was a hard one for me. Um, but I just kept coming back to the year , years and years ago. We , um, participated in a local event , um, that was with our Center for Independent Living, and it was a disability , um, awareness event. And it , I remember hearing for the first time nothing about us without us. And, you know, that's really stuck with me. And , um, I, I think what I wish people knew is that they shouldn't be making decisions and creating policies without having somebody at the table , um, that represents , um, somebody like my son, somebody who's blind, visually impaired , um, be , and I think so often we do , um, sit around the table and try to solve problems and try to fix things without having our kids there and letting our kids' voices be heard , um, or without. And so I think that that's, that nothing about us without us just kind of kept coming back to my mind. And , um, you know, I wish people would remember to be inclusive and bring everybody to the table when making decisions about our kids.
Krista Reid:This is Krista . I am actually considering taking blindfolds to my next IEP meeting and having them venture into the hallway or do things that they would do in the classroom when they come to me. And certain teachers don't want to modify things. I wish they could see it from my son's point of view where not as an outsider looking in of, "oh, it should be fine, he's got glasses," because my son's glasses don't fix his vision, unfortunately, and they never will. Um, but they look at him with his glasses and they're like, "oh, you're fine. You're just like any other child." So there's a lot of misunderstanding there that I feel like even just the teachers are like, "okay, let me put on these glasses that show you what it's like to see with a vision impairment and tell me, can you read this paper ? Can you see the board from there?" Do you think that's, you know, give them a different point of view? Because a lot of times I know I do that myself, where I am , I get frustrated because, you know, as a parent you wanna fix the world for your child and you obviously, you can't fix everything, so you wanna fix any little thing that you can along the road for them, but just having them be able to see, wait, this is really a problem and this is something I need to be cognizant of in the future and maybe change their perspective a little more.
Sara Brown:And what is one hope for your child as an advocate in their future? What's one hope you all have for your child?
Melisa Matthews:This is Melisa. I hope she never stops. I hope it never stops for her , um, at whatever job, college, whatever her future is , and not just not stopping for her, but , um, like Angel said, it's, it's the kids. It's the , um, younger ones who are looking to her for her to pave the way. So that's my hope.
Amy Shephard:This is Amy. I totally agree. And, you know, for his entire K through 12 education at the top of his IEP, our goal was that he become a contributing member of society. And, you know, he has done that. And I'm gonna cry <laugh> . And so I guess my hope now is that he continues to follow his passions and that he continues to use his unique gifts to make his community an inclusive place for everyone.
Tiffany Buzzard:This is Tiffany. Um, I hope that Brielle knows that she deserves to be seen and heard, and that she deserves access and, and opportunity to succeed. Um, you know, I hope that she understands that her voice matters and, and advocating for herself. She is , you know, also helping others.
Angel Webb:Hi, this is Angel. I would say , um, you know, Rusty's 16, he is a junior in high school. And , um, our, our fight, our constant fight has been for, and you know, we're at the end of , uh, his time in the public school system. And, and really I, my hope is that our fight was not for , um, nothing. And that children that come after Rusty will receive , uh, a free and appropriate education. And, and one of the other moms just said access. And that's really, it's been a fight for our children to have access to the curriculum. And, you know, one of the biggest things I think that people need to understand is that when we talk about , um, low vision or blindness, it's incidental learning. And so there's just seems to be this common myth , uh, where they assume cognitive disabilities. And if you haven't provided the child access to the curriculum and you haven't taught them, you know, vision is everything. And when we get, we all get so much information from, from vision. And so we literally have to get to the basics in order to provide that and , um, provide access to our students.
Krista Reid:This is Krista . I just hope that Bryon knows that there's no ceiling, that there is nothing that he can't accomplish regardless of what obstacle or hurdle is thrown in his path. That no matter what, there is a way and to not really accept no , simply because of an impairment, that's not something that he can help. And so to us it's not, we don't see it as a disability because we just see it as part of him. And that's how we've kind of addressed it. So if he wants to do it, he can do it and nobody will tell him no.
Sara Brown:Now my final question I like to ask everybody on my podcasts is, do you have anything else you would like to share or say about whether it be advocacy, whether it be in schools, whether it's about your children, is there anything else you'd like to share that you want our listeners to know?
Amy Shephard:This is Amy. You know, I would say to all parents out there that you have the skills to be your child's best advocate. You know your child better than anybody else. And , um, educating yourself, I think we already mentioned that once, is that , you know, the reality is, you know, we just, we have to become the experts and we need to educate ourselves and , um, share that information with your teachers, with your doctors, but you all have it in you already. So I hope that this podcast helps inspire everybody to take that leap and to get out there and do what you need to do for your kids because, you know, we love 'em and that's all we can do.
Melisa Matthews:This is Melisa, and I'm gonna piggyback off of that. Like, you just have to try. I mean, it's not gonna be pretty the first time. It won't be pretty the second time. It's not gonna be pretty the third or fourth time. And then when you shift it to your child and they start taking ownership of it, it is going to, I mean, it's a process and a journey. And again, the more you practice that , the better you'll be, the better you're , um, be able to communicate needs and show your child the variety of answers that they can give or no answer at all is still an answer. Um, and empowering them with their options of what they can should say, you know , um, and just continuing along their journey, walking side by side them , figure out what's uncomfortable for them, modeling how it may be uncomfortable for you, but how can you answer politely or don't answer at all? You know, those types of things. And you'll get there. It's a journey .
Krista Reid:This is Krista . I feel like the fact that we're having this conversation says a lot. For the longest time, I felt like I was in my own little trench and I was digging away trying to help advocate for my son and get him where he needed to be. And then all of a sudden I met all these other people who are also in a trench and they were also digging away with their children in mind and their future, and they're wanting the best for their child. And then you realize that you're all digging in the same area, and that when you're able to communicate with others who are also advocating for their child, it makes us all stronger because we're learning from each other. We're all gaining knowledge, we're all gaining more confidence based off of, "I'm not crazy. This does exist." And you know, that kind of a situation where you realize that you aren't, you aren't alone in this battle. And I know a lot of people have felt that way where it's very isolating. You're very emotionally drained, you're mentally because you just want what's best for your child. And knowing that you're not in this by yourself and there's always people you can reach out to, it definitely makes it easier while you're starting this process or while you're in the middle of the process, especially when you get to that light at the end of the tunnel and things get easier, you can help others get to that light.
Angel Webb:Uh , this is Angel. I was just gonna say that's so good. And I think that that's probably one of the most , um, important lessons for all of us is to say that you're not alone and that there are other advocates , um, in your community and at the school that , um, keep your eyes wide open and make sure you have a seat at the table. I always encourage everyone to sign up, show up and sit at the table and make sure your voice is heard. And , um, and I will say that , um, you know, PTA has been one of the ways that I have made sure that I have a seat at the table , um, with various leaders in our community. And it was honored to , um, be awarded the lifetime membership award last year after I had just gone through a due process with our school district. And so to have 45 campuses unanimously vote for me, it was such an honor because that's the number, the volume, you know, there's over 40,000 students in our school district, but to know that the other moms and dads and teachers in that room that they stand with you and they have a voice. And so I think that , um, that's one of the best things that, that we can put out there as a group is to let other , uh, caregivers and , um, students with vision impairments know that they're not alone and , um, and that we're here for you.
Sara Brown:Okay. Well ladies, thank you all so much for joining me today on Change Makers. Thank you. Thank you
Angel Webb and Krista Reid:Thank you so much. Thank you.
Tiffany Buzzard:Thank you so much. Thank you.
Sara Brown:Thank you so much for listening to this episode of Change Makers. I've put a link to the ConnectCenter in the show notes. The ConnectCenter provides a plethora of information to empower people towards greater independence and lifelong success by providing free curated information and resources to assist children, parents, job seekers, and adults who are blind or low vision. Also, if you have an interesting topic that you think would make a great podcast, send it to me at Changemakers@aph.org. As always, be sure to look for ways you can be a change maker this week.