"Fast 15" with Champions of Special Education
Welcome to the FAST 15 podcast, hosted by Barb Beck, a highly dedicated Disability Advocate and Special Education Consultant specializing in IEP Transition Services. With nearly 30 years of experience as a special education teacher, Barb is passionate about empowering transition-age youth and fostering positive post-school outcomes.
Barb's expertise lies in providing comprehensive support and guidance to students with disabilities, ensuring their successful transition from school to adult life. With a background in Speech/Language Pathology and specialization in Deaf/Hard-of-Hearing, along with a master's degree in Special Education and National Board Teaching Certification, Barb brings a unique perspective to her work.
Through the FAST 15 podcast, Barb shares her insights, strategies, and experiences in IEP transition planning. Each episode features engaging conversations with experts in the field, educators, and advocates, providing listeners with valuable resources and tools to excel in transition planning for students with disabilities.
Whether you're a special education teacher, parent, or advocate, join Barb on the FAST 15 podcast to gain practical advice, inspiration, and innovative approaches to supporting students in their journey towards independence and success. With Barb Beck as your trusted consultant and advocate, expect unwavering dedication and comprehensive expertise in IEP transition services.
Don't miss out on empowering conversations that envision bright futures for young adults living with disabilities. Tune in to the FAST 15 podcast and be part of a collaborative community that celebrates the unique abilities and potential of every individual.
"Fast 15" with Champions of Special Education
Our Community: Joanna and Chrissa on Optic Nerve Hypoplasia (ONH) Awareness
Imagine navigating a world you're unable to see - sounds scary, doesn't it? Tune in as we unravel the mysteries and challenges of Optic Nerve Hypoplasia (ONH), the leading cause of childhood blindness. Our special guests, Joanna and her remarkable 13-year-old daughter, Chrissa, take us on their incredible journey of living with ONH. They reveal the power of community support through a Facebook group that's grown from 500 to a whopping 5,700 members.
Chrissa isn't just any teenager - she's an inspiring young individual battling ONH (Optic Nerve Hypoplasia). As a Braille learner and a fervent advocate for the right to adequate accommodations, she's breaking barriers and achieving her milestones.
But, that's not all. We dive into the crucial role of early intervention and second opinions in managing ONH. As Joanna and Chrissa remind us, it's not an easy journey - it's filled issues and countless hurdles, but the right care, community support, and self-advocacy can make all the difference. Join us as we celebrate Chrissa's accomplishments and dreams, serving as a powerful reminder that we are all champions in our own unique stories.
Barbara Beck is the host of the FAST 15 Podcast. She is a highly dedicated Disability Advocate and Special Education Consultant specializing in IEP Transition Services. Barbara has an extensive background as a special education teacher spanning nearly 30 years. She has dedicated her career to empowering transition-age youth and fostering positive post-school outcomes.
Barbara's expertise lies in providing comprehensive support and guidance to students with disabilities, ensuring their successful transition from school to adult life. She possesses a deep understanding of secondary services and possesses the skills to develop tailored strategies that maximize individual potential.
For more information and resources on special education school-to-adulthood transition planning and independent living, visit www.mykeyplans.com. Join us on social media for updates, behind-the-scenes content, and discussions about special education, inclusion, and disability advocacy. Follow us on Facebook, Instagram and LinkedIn and use #IEPLaunchpadPodcast to join the conversation. Thank you for tuning in to the IEP Launchpad Podcast! 🎧🎙️#IDD #teaching #specialed #specialneeds #InclusionMatters #DisabilityAdvocacy #EmpowerVoices #edtech, #education #edtech, #teachers
At the Launch Buddies podcast. Our mission is to empower individuals with disabilities by amplifying their voices and sharing inspiring stories of personal growth, resilience and independence. Through meaningful conversations and valuable insights, we aim to break down barriers, ignite hope and provide a platform for self-advocacy. Together, we are committed to fostering a more inclusive community where every person can thrive and soar to new heights. Hello everyone, and welcome to a special episode of the Launch Buddies. Today we're really excited because we have the pleasure of hosting two incredible guests who are here to raise awareness about O-N-H or Optic Nerve Hypoplasia. I'm your host, barb Beck, and I'm here with my co-host, darian, and we're excited to introduce our guests Joanna Matheson and her daughter Krissa.
Speaker 2:Joanna, thank you for joining us. Could you please introduce yourself and tell us a bit about your background, especially your work in early childhood education?
Speaker 3:Absolutely. Thanks for having us today. This is an incredible opportunity for us to spread some awareness. So being here, thank you for having us. I started my journey in early childhood education actually when I was still in high school. I took a class called Careers in Education and I knew right away that I needed to work with children. I chose the path that my parents were like you won't make much money, but your heart will be full. And so I chose the heart's going to be full. And from there I put myself through night school while I was teaching full-time kind of learning the ropes. And then, when I graduated with my certificate in early childhood education, I immediately started a full-time job and quickly climbed the chain up through childcare and was offered positions as a program director and a director of the school and a curriculum program supervisor. Children are just my people. I've always been a kid person. They just come to me out of the woodworks. You're a magnet I hope so.
Speaker 3:Yeah, yeah, I definitely enjoy working with children, and all my life I knew I wanted to have five of my own, and then I was blessed with Krissa and she changed my life.
Speaker 1:Absolutely Welcome, krissa. We're so delighted to have you here today, and could you tell us just a little bit about yourself and just some things like how old you are and some of your interests in general?
Speaker 4:My name's Krissa, I'm 13. Just turned 13 in April. Okay. I'm on 23rd and my interests are cheer. Sadly, my season just ended.
Speaker 1:Your cheer season, yeah.
Speaker 4:And I like to play Roblox with my friends.
Speaker 1:Nice, that's a connection point for you and your friends. I've heard a lot about that.
Speaker 4:And especially my friends that are far away.
Speaker 1:You're using technology to connect with friends through gaming.
Speaker 4:Yeah, because I have a couple of friends that don't live in the state.
Speaker 1:Okay.
Speaker 4:One of my friends actually has my same eye condition and lives in Ohio.
Speaker 1:Oh wow, All right.
Speaker 4:So I play with her a lot and talk to her almost every day.
Speaker 1:That's excellent, all right, and how long have been connecting with friends over technology? I'm really fascinated, obviously, with how technology can connect people and how it can really help to use your voice, either make connections with people and foster relationships, but also we're using some pretty amazing podcast equipment to get your voices heard and your experience known as well, and thank you so much for participating with us today, and it's just wonderful to get to know you a little bit. Thank you.
Speaker 3:I would like to add that the way that Krissa has met her friends, the ones affected with optic nerve hyperplasia like her, is through our Facebook group.
Speaker 1:Okay, well, can you tell our listeners a little bit about your Facebook group?
Speaker 3:Our Facebook group is growing immensely every day. Optic nerve hyperplasia is the leading cause of childhood blindness. Wow, okay. When we got our diagnosis in, I didn't know where to turn. I had just joined Facebook because a friend of mine had moved away. I didn't realize how much connectivity we would have at our fingertips through Facebook Amazing. I am forever grateful to Facebook and Meta for providing these platforms for us to connect with other people who are going through the exact same things that we are.
Speaker 1:Can you give us a picture of, maybe, what the numbers are?
Speaker 3:Sure, our group started at 500. Okay, and we now have 5,700 members on our Facebook group.
Speaker 1:And what about the incidence of ONH?
Speaker 3:ONH is a rare eye condition, although now it is the leading cause. There is a lot more awareness than when I started my journey trying to figure out how to navigate blindness. Optic nerve hyperplasia is an eye condition, but it also affects many other parts of the body. Okay, it comes to the point where, if you are not followed properly by an endocrinologist and have your blood drawn and you go through all of the steps, that there is a chance for fatalities. And in our community of ONH, if you do not have the three key doctors to help you on your journey, there is the chance that you could lose your child without knowing how to properly help them.
Speaker 1:Wow. So getting that information to people who are just in that phase of getting a diagnosis, starting that journey, knowing that there are people out there that have taken more steps than they have at that point on the journey what a powerful opportunity to connect with others and to feel like you're not alone.
Speaker 3:Right and to make sure that we're making a difference. Yes, we have a lot of folks that are in rural areas. We're a global nonprofit. We're not just the United States. We decided to take on the entire world and, that being said, we have to have admins in the UK and admins in Australia and people that can help filter for hyper-local resources. We have folks in China that can't come over to the United States and are choosing stem cells and things, which has no proof of actually helping rejuvenate.
Speaker 1:Okay, there's a lot of Getting the word out about those things Right.
Speaker 3:Yeah, there's a lot of confusion, especially still in the medical world, because it was first and foremost called DeMorcer syndrome and then it was called septo-optic dysplasia, but now the actual term that all medical professionals should be using is optic nerve hyperplasia.
Speaker 4:Okay, and that's very confusing as well. Is it septic optic hyperplasia?
Speaker 3:O-N-H and S-O-D are the same thing. Those are the acronyms. So the confusion here with septo-optic dysplasia is pretty much the diagnosis. That also means your child was born with brain abnormalities. Okay, because of the large spectrum of O-N-H and how every one is affected differently, the confusion between the words has caused a lot of confusion in the medical field and it's causing a lot of misdiagnosis, I see. So get your second opinion, get your third opinion and listen to your gut. Okay, definitely.
Speaker 1:Big, huge deal with a mom. Listen to your gut and I know that you probably had many of those types of moments in your life, so thank you for sharing that.
Speaker 2:Grisha, from your perspective, can you share with us what it's like living with O-N-H and how it might affect your daily life?
Speaker 4:At school. It definitely affects me because sometimes I have to have enlarge papers and some of my teachers forget to do that and it annoys me Of course, yeah, yeah. Especially, I've had bad luck with science teachers last year and this year. They just don't get like. They're always trying to fix things and they just can't fix this. So they just don't put in much papers in and it just upsets me that they don't really care that much.
Speaker 1:And they must know already right about the accommodation that you need to access the curriculum, and yet maybe they forget or they just don't take the time to make that extension to what you may need, and so I can see where you would feel very frustrated and tired of advocating for yourself often. I don't know, darian, if you have felt any of those things, because you have. You went through school and had accommodations that you were able to get through your IEP. But can you share a little bit about maybe some of those experiences that you might have related to Carissa and the frustration of trying to access curriculum when people should just Be on board.
Speaker 3:Be on board, be legally to the bind document, of course, definitely yeah.
Speaker 1:With your legally binding document. That's well said. Thank you for saying that Definitely.
Speaker 2:So, as an individual who faces anxiety and high functioning autism, it's extremely difficult when people do not understand you. I've experienced that Carissa, where people don't. It doesn't register right away, which I get, but everything takes time. It's just a matter of being willing and acting on understanding what one deals with and providing the right accommodations for them so that way they can thrive in the community, they can thrive in the classroom, they can thrive in their education and then from their education into adulthood. It's just accommodations for people who deal with these things, certain struggles that may hold them back.
Speaker 1:I had a follow up question, carissa, about your experience with teachers or whoever else is in your community, either at school or in cheerleading, wherever that is what has been, I guess I should say. Who has been your greatest champion outside of your family? Can you describe somebody that has been your biggest champion to come alongside you? Is there somebody that comes to mind?
Speaker 4:Like at school or at work for others.
Speaker 1:Could be at school or a coach.
Speaker 4:What about Emma? Yeah, Emma, she's great.
Speaker 1:Tell. Can you tell a little bit about Emma?
Speaker 4:She is my TVI. She's amazing.
Speaker 3:That's a teacher for the visually impaired, tvi Okay.
Speaker 4:And she does an O&M with me. She used to do my braille, but O&M is orientation and mobility.
Speaker 3:It helps practice getting around safely, whether that's using a mobility cane, a white cane or just using the vision that you have, your functional vision.
Speaker 4:Yeah, I've been doing braille since I was three.
Speaker 1:Oh, I was gonna ask you that when you started learning braille.
Speaker 4:So I just got sick of it, honestly.
Speaker 1:Okay.
Speaker 4:And I just felt, and it was just me and one teacher and just one room, so it was weird to just not have anybody else in there, and it was getting to something that I didn't really want to do anymore and it was, and I was getting bored of it.
Speaker 3:So one thing to explain to you about braille is that braille is a code. A lot of folks will say braille is a language for the blind and visually impaired. But braille is actually a code. It's a code of six cells that are represented through the numbers one through six, and you can make every single letter of the alphabet with those different keys. It looks like a very a braille writer. It looks like a very old typewriter from the 1900s. Yeah, it's very heavy.
Speaker 3:And Krissa has become. She taught me how to load braille paper because I have had a really hard time. Braille paper is a little bit thinner than stock card and it's always on a Manila color and when you are able to key in the letters that you would like to braille, it makes a very loud punching sound.
Speaker 4:Yeah, and she knows. I've been showing you how to do that since I was about five. Yeah, okay.
Speaker 3:Krissa knows the braille writer. It's a Perkins braille writer. She knows it way better than I do, but I try.
Speaker 1:Okay, well, we're talking about technology and how things have changed over time and learning that, one of the things that I wanted to call out, krissa, and what you were saying in that experience of learning braille with one other person your mobility specialist or what? No, it was specifically your.
Speaker 3:The teacher that would teach braille is called a teacher for the visually impaired and they must be certified, so it's a TVI.
Speaker 1:TVI. Okay, All right, and that is very exclusionary kind of practice, right, when, yeah, you need to learn those things but to pull you out of and work with you for so long when you feel super isolated. I can imagine what that feels like as a young person just wanting to be part of the rest of the community right.
Speaker 4:The way that it's changed me from not having braille anymore. I just feel non-isolated, okay, and feeling more impacted with my friends and being more social with them. So that's helped me a lot. And I've only had one bad experience is when I was one of my teachers that I was reading backwards, even though if you read the word or the letter wrong, they'll say, hey, can you read that again? So that's what they said and I was like, okay, I'll go back and after that she goes, my sub goes. Do you have dyslexia?
Speaker 1:Oh, so she discovered that.
Speaker 2:No, no so this is not dyslexic.
Speaker 4:Okay.
Speaker 3:And her braille teacher knew that it was actually a very pivotal point in learning braille for us, as in order to learn, you have to feel comfortable.
Speaker 4:You have to feel like you have a relationship with your teacher.
Speaker 3:A student teacher relationship is so important and this woman, she just it's time to retire. Let's just say that okay.
Speaker 3:So she's not enjoying her job as much. She got frustrated with my daughter and literally this woman asked are you dyslexic? Okay, now, as a parent with a student on an IEP, we know that dyslexia would be included in that legally binding document. So for her to go and mock my child for making a simple mistake, I just I couldn't hold in my mama bear. I had to have a conversation with her to let her know that it was absolutely inappropriate and that a diagnosis is a very pivotal point in anyone's journey.
Speaker 3:You don't just get to call someone out and say, oh, you must be dyslexic At this point in Chris's education it is clear that she is a very smart and capable child.
Speaker 4:Unfortunately, it just wasn't the right setting for Chris and it was very and when she said that, my heart stopped of-.
Speaker 3:It felt rude, right, definitely, definitely rude.
Speaker 1:I'm really sorry that happened and I'm sorry that I think a lot of people have experiences in the field as you go through, sadly, it's up to us to educate other people and but when it happens to you and you go through something that makes you feel more excluded, less included, labeled again for something that you shouldn't be labeled with Right, and I think that just we have to get better.
Speaker 4:Yeah, After that help that happened I just felt uncomfortable near that teacher. Yeah, of course, and any other time that I was around her.
Speaker 1:Like I felt she was gonna make another rude comment.
Speaker 1:Yeah, chris, I'm really sorry that happened. I really am. I think that hurts all of our hearts to hear that story. We're gonna take a little bit of a break. We wanna hear from our sponsors and then we will be right back with more from your story and your experience and how we can build community. Enjoying the Launch Buddies podcast, we're all about celebrating the voices of self advocates who bravely break down barriers.
Speaker 1:Speaking of brave advocacy, let's take a moment to recognize our sponsor, s-d-e-s Functional Academics. S-d-e-s offers a comprehensive curriculum, training and consultation for students with disabilities. Their Styre Fitzgerald program for Functional Academics has been refined with input from educators and families, achieving great success in classrooms nationwide. As Launch Buddies, we understand the challenges of finding the right education. With S-D-E-S by your side, you'll feel confident and empowered to provide an exceptional education for every child in your program.
Speaker 1:Visit S-D-E-S Workscom to learn more about the Styre Fitzgerald program for Functional Academics and make a real difference in your teaching. Thank you, s-d-e-s, for your commitment to inclusivity and accessibility. Now let's dive back into our conversation that's so captivating, with our amazing Launch Buddies. All right, we're back, and during the break we were talking a little bit about science, teachers and how. All right, we're back and during the break we were talking a little bit about your experiences and reflecting and thanking you for being so vulnerable and sharing what you have about your experiences with people in school adults that we wish knew better about how to approach students with disabilities or conditions with your vision, and you were saying just as far as scientists are trying, we're trying to cure things, that's right.
Speaker 3:What did you say? Yeah, scientists are always trying to find a cure, a solution.
Speaker 2:A solution.
Speaker 3:They're always looking to. They're science. They wanna help find the answer. So I found that science teachers are the hardest to get through to, because they're constantly looking for how to make it better right.
Speaker 4:And whatever happened last year in this year. Can you explain that Cause I don't remember all of it but, you probably would. You had all the conversations. Yeah, yeah, what was that?
Speaker 3:I'm pretty much a professional at hard conversations. Now, just going back to science, right, scientists are amazing, but sometimes they are so focused on trying to find a cure that they forget about how things affect. Yes, so if it doesn't directly affect you, sometimes it's over your head and I understand that. But I also need you to realize, as a teacher, that you're here to serve your students' needs, and an IEP is a legally binding document that includes specific accommodations and modifications so that my child can learn in a world that's set up for visual learners as a blind student. It's not hard to do that. It's very easy to read directions on an IEP and follow them. However, as an educator myself, I understand you kids. You have other students that have other needs as well and you need to be making sure that you're meeting those needs.
Speaker 3:But when my child is the only kid in the class that is assigned homework because she can't keep up with her labs, it's inequitable, it's rude and I won't stand for it. At Curriculum Night, this teacher told me your child, your student, will never have homework in our class. All the work is done here in lab. That's how science works. So when I got an email from the teacher saying I'm sending home Chris's lab homework, I was flabbergasted. I wasn't even able to reply to the email before he decided to take it upon himself to send the homework home. Then, when my child attempted to do the homework because she was told to although homework is out of her IEP we don't accept homework, we accept tutoring he scored her paper and she failed.
Speaker 2:Oh, come on.
Speaker 3:And then he said We'll give her a chance to redo it. If no, ifs this is not an if situation you will give her a chance to redo it and you will no longer assign homework to my child.
Speaker 2:See, in that arena she was to set up for failure, exactly, and so it's like you failed the student, but she didn't have the accommodations to be able to perform this homework assignment, to perform this in this subject. She wasn't. She didn't have what she needed, she was just throwing into something and I don't know what to do with this. I can't do anything with this because I don't have what I need to do this and despite the fact that they had promised that they were gonna provide the right kind of like education and not sending homework home, and they did the opposite, it just sounds a lot like I'm gonna Discrimination.
Speaker 2:Exactly.
Speaker 3:Yeah, you can say the word.
Speaker 4:Of course, discrimination Absolutely.
Speaker 2:But also the other thing I was gonna say too. It was the saying they're gonna do something but they don't follow through with it, and that's hurtful.
Speaker 3:It is, and Krissa has become quite an amazing self-advocate. There you go when she uses her loud, confident voice and it's not heard. I will mama bear from left and right field. You won't even see me coming, but I don't want that to happen. I am teaching my child to navigate life that is made for visual learners as best as I can, and all I ask for is that each person follows the rules.
Speaker 1:I think that's like it's a law.
Speaker 3:It's a law and I have unfortunately had to start making civil complaints. And we have rights. We have rights in the school district under the IEP. When my child graduates, she has rights under the Adults with Disabilities Act. My child will be protected. She will be protected. She will go on and be an adult and be protected then too. So it's just baffling that these adults that are here to educate my child are not a comedy.
Speaker 1:Yeah. So I think, one of the things that is so powerful that I think, krissa, that you are learning with your stronger voice, your strongest voice, that becoming your own best self-advocate is so amazing and you have an incredible model in your mom to advocate for your needs. Sadly, we don't have professionals that are totally understanding what a legally binding document it is, an IEP, that what's written in there needs to be carried out Daily. Daily, yes, yeah, for sure, absolutely, darian. What's our next question that we have?
Speaker 2:Joanna, as a mother, you've been on a unique journey alongside Krissa. Can you tell us about the challenges and triumphs you've encountered in supporting her?
Speaker 3:Absolutely. As I said before, I always just wanted to be a mom. I wanted to have five children and I was blessed with Krissa and I learned really quickly that Krissa was my five kids. I needed to learn how to support her in all the areas that I had no idea how to do and I think, like most moms or folks just people in general that receive a diagnosis there is this mourning period I had. I really I mourned the loss of my daughter's vision of what I thought I would be having.
Speaker 3:I had dreams, of course, and I quickly realized that I needed to adapt to this new life and after I don't know, it was probably about a year of me just trying to figure out what am I gonna do Financially. It was very stressful. We didn't have, we don't have, a lot of financial support and unfortunately, health insurance is fabulous but they don't cover a lot of eye specialists and eyes are extremely expensive. Okay, after figuring out what to do financially, I was able to get enrolled in early child or, I'm sorry, in early intervention, which is a birth to three service. When you find out your child has a diagnosis, an agency will come into your home and provide in-home instruction and help you learn how to work with your child.
Speaker 1:That was life changing for me too, the early intervention strategies and opportunities. Those services are so critical to get a head start in the right direction, to get oriented, to okay, your new life, this is my new life. What is this experience going to be like today and in the next steps? How did I get to that community around me?
Speaker 3:Yes, so when we started in-home therapy, chris was just nine months and I had been told the very worst. When she was diagnosed I was told she wouldn't thrive. There was a chance she would never hold her head up. There was a chance she would never feed herself. There was a chance she would never walk. And we beat all the odds. That kind of goes back to the confusion of SOD and ONH, because when you are on the spectrum of optic nerve hypoplasia you can have brain abnormalities, you can have endocrine issues and a lot of other things can accompany this, not just your visual aspects. So after we did the blood work and we found out that Chris had no endocrine issues, it was a little relieving for me to know that she would be growing normally and she would be thriving. Chris hit all of her milestones at typical times. She I literally wanted to wrap her in bubble wrap when she was learning to walk, as you can imagine not being able to see.
Speaker 3:I was very concerned, but she was fearless. She climbed the climbers, she climbed the wobbly bridges.
Speaker 4:Thank you, she was a very good album Fearless.
Speaker 3:we're huge Taylor Swifties it's true, right. But just to see how amazing she had done all the things that she was supposed to do. I'm like these doctors are whack. I'm gonna go find a second opinion.
Speaker 1:It seems like that is so common that people get all of the worst case scenario yes, oftentimes and getting that second opinion.
Speaker 3:I'm glad you stated that because encouraging other people that, okay, go check another source, right and yeah, and even if it is children's hospital, which is the absolute best place in Seattle to be, their vision department just wasn't for us. The scientist there, the lead scientist, the lead ophthalmologist he really wanted to guinea pig Chris. He wanted her to do visually evoked tests, which involves strapping pads to your baby and having their brain be stimulated and unstimulated through visual aspects and trying to read brain waves, which is extremely difficult in children. So I just opted out of all of that. It didn't feel right, it didn't sit well with me. Again, back to your gut.
Speaker 1:Your gut feel as a mom.
Speaker 3:Yes, and then they said let's try a trophine, which is an eye drop that you can put in your good eye that makes it blind. That would help your weaker eye over time. I didn't feel comfortable doing that either, because I knew that this was an optic nerve issue. This wasn't a retina issue or something that could perhaps be corrected a cataracts or things like that.
Speaker 3:When you have the nerves, the optic nerves of your eye connect to your brain. You and I have typical optic nerves, so we have millions of optic nerves fiber optic nerves connecting our eyes to our brain. O and H has maybe a hundred nerves connecting. So every case is very different and the deterioration of optic nerves is in utero. Okay, when you are growing your baby, our eyes develop between the 12th and 16th week of gestation. It's usually, we would say, around the 14th week. By the time you have your 20 week ultrasound and your gender appointment and things like that, they would be able to tell you how your child's optic nerves are just by seeing them on an ultrasound. Now, as of 2015, doctors are diagnosing O and H in utero because of that, and it's giving parents a whole new shed of light and hope because when their baby is born, they already have the resources they need. Wonderful.
Speaker 1:Yeah.
Speaker 3:Okay.
Speaker 1:And I love that concept. Last time we were talking about how hope plays such an important part and that early diagnosis, the early intervention, the opportunity to navigate your path with community is huge and very hope giving right. Carissa, I would love to hear a little bit from you about your achievements and dreams for your future. So what are some of the things that you're really proud of that you've recently experienced? What are you hoping for the future? Since we're on that topic of hope, Definitely is.
Speaker 4:One thing is that sometimes if the like what mom was saying about, like how I was born, and stuff it. Once I was handed a small print paper that was about 12 point font.
Speaker 3:Yeah, okay, and Chris's preferred font is 20 point font. Okay.
Speaker 4:And that Sometimes, when that happens, I have to call mom and say, hey, this isn't, they enlarged this, but they put it to 12. This isn't okay. So sometimes I even have to call her and tell her because it's not right.
Speaker 1:I think that's one. Actually a big achievement is that using your voice to say what you need and doing that, reaching out to your mom or to whoever that is one amazing achievement that you're becoming a great self-advocate and, for the future, some of the experiences that you'd like to capitalize on some of the things that you'd like to explore. Can you talk a little bit about that?
Speaker 3:Do you remember what you told me about what you would like to build for?
Speaker 4:folks with disabilities. Oh yeah, I was gonna build a coffee shop with a braille, like braille menus.
Speaker 2:Yeah.
Speaker 3:Oh wow.
Speaker 4:And a lot of restaurants don't have that.
Speaker 3:A lot of restaurants are lacking on their braille menus. And if you're a restaurant owner and you hear this I can help you braille a menu That'd be amazing.
Speaker 1:Could you braille a cup so that? When you're like pulling the cup in your hand.
Speaker 3:You get some messages or you get the yeah, Exactly, it could just say have a sweet day.
Speaker 1:Anything like that.
Speaker 3:Anything like that that a blind person could naturally pick up and read and feel connected.
Speaker 1:That's what she wants to do. Hey coffee shop owners, do you hear this? You may have a future employee on your hand helping you become-.
Speaker 3:Shout out to Rebecca's Brew. Yes yeah, we love them.
Speaker 1:And I know you're wearing a sweatshirt your mom's wearing a sweatshirt that says the future is inclusive, has a big heart over her heart, and what a great sweatshirt. I love that. And another one disability is not a bad word. I appreciate that so much, darian. What do you think about that?
Speaker 2:message. What from looking at this, it's people like you both who are going to help to make a difference, who are going to Truly. Who are gonna put a word out and it's gonna sink in. It's just our world has some waking up to do in areas Especially with understanding certain individuals with disabilities Absolutely.
Speaker 3:And it's just-.
Speaker 1:I appreciate you saying that, Darian. It's incredible.
Speaker 2:just these words and the sure-seek, the sure-seek guys are wearing. It just goes to show that of what the world can be and that we can do better than where we are now, and being an inclusive community is gonna be great for everyone.
Speaker 1:Bringing life and light to those areas that really need to be illuminated, enlightened, taught, and you're doing that through your website. As we wrap up here, can we talk a little bit about the website that you have? You did mention your Facebook community, but you also have a website that I wanted to highlight some of your work around that. Can you talk about your team that you're working with through that?
Speaker 3:as well. Going back to Facebook, when I did my research I just typed in optic nerve hypoplasia and a few different groups came up. The National Federation for the Blind came up, but I felt I just I really wanted to focus on the diagnosis itself, not just blindness. So after I connected with Adalis, who is the president and CEO of our O&H Awareness Nonprofit, her son is just a few years older than Chris, on a different spectrum of O&H. Three years older, he just turned 16, right, he just turned 16, that's right.
Speaker 3:We definitely have our children connect with each other so that they can talk about similar things that they're struggling with and their triumphs, and things that work for them and things that don't. Chris met her best friend Peyton through optic nerve hypoplasia awareness.
Speaker 4:And I've known her since December 27th or 28th, so that's a holiday too, that's fun.
Speaker 1:She's making that their friendship day. Oh, I love that. That's so good.
Speaker 4:And when I get not in large papers, I know I can go home and I can call her and I can talk to her, because that same thing happens to her and it's actually worse for her. One of her teachers doesn't know what enlarged papers are, and her aid forgot how to use the thing that blows up the papers Okay, so that's just super upsetting.
Speaker 1:To have somebody that understands and is walking that journey alongside you for your friend. I think that's amazing. I love your community that you're building. For those reasons and for so many other reasons to get the word out and for educating the community.
Speaker 3:Our website that we really wanted to make a big impact for was a hyper local community connector. So once you join ONH awareness, you can actually right now wave the suggested donation fee of $25 with the code all caps thank you At the payment site.
Speaker 1:One word, two words.
Speaker 2:One word, thank you.
Speaker 3:You can go in there and click on the family locator. You can type in your zip code and it will pin you with other families that are in your area so that our children can make connections with each other. Wonderful, because you don't know what it's like until you're directly affected. So, having these children build these relationships early on, I'm hopeful they'll last a lifetime.
Speaker 1:That's what we're going for, yeah.
Speaker 4:And what was I going?
Speaker 3:to say Probably something about Pay-Pay. Yeah, oh yeah, okay.
Speaker 4:So the first time we called I was like who is this girl? And then a few months later, at the end of the course, we were saying I love you, bye, oh, that's so amazing.
Speaker 1:It's such a testament to your friendship that you've built the love that you share, the respect that you have for each other. I love that so much and I have so much respect for both of you. Thank you so much for taking the time to join us today. Yeah, thank you, Joanna and Chris, for sharing your insights and experiences, not only about ONH, but also about the importance of community, school inclusion, school information, IEP, the importance of having those plans in place and followed through, and what a remarkable journey of learning Braille and having a future plan of working in a coffee shop to serve other people who are living life with similar vision, impairment and opportunities to build community.
Speaker 4:Another job is maybe making.
Speaker 3:Are you talking about sensory clothing or?
Speaker 4:What is that? Like a pop-it shirt. That'd be really interesting.
Speaker 1:Hey, you're onto something there.
Speaker 4:What were you?
Speaker 1:thinking of though.
Speaker 4:Making, braille writing, because I also want to work at a makeup store or a clothing store. Yes, adaptable clothing, that's a big thing, yeah, and maybe making the prices in Braille numbers or seeing what it is in Braille numbers, like where the stopper is, when the first piece of clothing is like the stopper right there. Okay, helping but it right there Helping people.
Speaker 3:Yes, I love that Adding Braille descriptions to things. Yeah, we're very descriptive people. We've become very descriptive people, which is helpful. And just one more thing, too. I just wanted to say thank you so much for having us, and I have decided to just go out on a limb and help all the folks that I can. So I've become board certified in special education through the National Association of Special Education Teachers Wonderful.
Speaker 4:That's a long sentence.
Speaker 3:That's a long sentence. Here it is. I really enjoy making sure that our families and their students are getting all the services that they need. The special education in public schools is very confusing, if there's anything that I can do to lighten anybody's load. I started volunteering with the ARC as a parent partner in IEPs and decided with the ARC. I wasn't allowed to say my piece, I just had to support the parents. But now I can say my piece and I'm getting through to a lot more educators as an advocate, helping represent families with all sorts of learning challenges and disabilities.
Speaker 1:Wonderful. Is there an email address that people could reach out to you if they'd like to continue the conversation or find similar supports?
Speaker 3:Or if someone was listening to this podcast and they know someone directly affected with O&H or blindness. I am also the representative for Washington State for the Parents of Blind Children through the National Federation of the Blind. I'm constantly coordinating with moms who are just getting diagnoses and providing support and helping be their sounding board while they figure things out. You can always reach me at joannajonaorg is my email and my own personal disability page is called IEP Like a Mother on.
Speaker 3:Facebook. That's great, and I'm slowly turning my advocacy into a business so that I'm able to be a voice for those who aren't able to be their own voice. I love that.
Speaker 4:Thank you so much. And another thing is once I was in the car with my dad and he goes. Me and your mom are so proud of you for pushing through public school and not having to go to private school. Because public school is something lucky that you can do as a blind person, especially because some teachers just don't get it, and the fact that you can push through that is amazing.
Speaker 1:I think that's a great achievement that you just highlighted, and I would really agree with your dad on that and love that he gave you that encouragement, that message and something to anchor to. We wanna celebrate you and all your achievements and just encourage you to just keep on moving on, keep on breaking down those barriers I know, darian, you've been doing that for a very long time and continue to be a champion for other people and a motivational speaker for people who have similar experiences. So thank you so much.
Speaker 2:I just also wanna thank our launch buddies community for joining us in this important conversation and that we should continue to raise awareness to support one another. It's important and it's incredible the amount of good that comes out of people who deal with struggles, because we all do.
Speaker 4:We do.
Speaker 2:But when we look at each other's strong points and we work together to work on the weak points, who knows? There are many possibilities. There really are.
Speaker 1:That wraps up today's episode. Remember, no matter the challenges we face, we're all champions in our own stories. Stay tuned for more empowering discussions in the future and until next time, keep soaring to new heights and launching the dreams and plans for your future. Thanks so much.
