When Sarah Kalis walked into the room with her son, Crew, I saw more than just a mother and her child; I saw a beacon of hope personified. Sarah, a former special education teacher turned medical mama, joins us to share the profound lessons and stories from her life with Crew, who has cerebral palsy. Her candid narration of the transformations she's undergone – from shock and grief to acceptance and advocacy – is a testament to the power of resilience amidst the unpredictable waves of parenting a child with special needs. This episode is dedicated to every parent who finds themselves on a similar journey, as we offer solidarity and comfort in knowing that even in the depths of challenge, there is community and support ready to lift you up.
Navigating the often-uncharted waters of disability parenting, our conversation extends to the wider aspects of entrenched systems that impact families like ours. The frustrations with healthcare policies, the inadequacies of insurance systems, and the fight for necessary resources are all on the table as we discuss Sarah's own experiences within Illinois' challenging framework. It's not just a dialogue but a rallying cry for collective advocacy and systemic change. And amidst these heavyweight topics, we also celebrate the small victories, like achieving milestones and acquiring adaptive equipment, because joy and gratitude are just as vital to our stories as the obstacles we confront.
Drawing on her background as a special education teacher, she underscores the indispensable role parents play in shaping their child's educational journey. The chapter on empowering parents in special education reveals strategies for more impactful and collaborative IEP meetings, highlighting the importance of parents' insights and strengths. We conclude with a powerful message of hope and support, reminding listeners of the monumental impact they have in their child's life. We urge families to harness their innate strength, to lean into the support network around them, and to keep moving forward on the path to accessibility and inclusion. Share this episode with someone who could use a reminder that they are not alone, and join us as we continue to support and empower each other through every challenge and triumph.
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
When Sarah Kalis walked into the room with her son, Crew, I saw more than just a mother and her child; I saw a beacon of hope personified. Sarah, a former special education teacher turned medical mama, joins us to share the profound lessons and stories from her life with Crew, who has cerebral palsy. Her candid narration of the transformations she's undergone – from shock and grief to acceptance and advocacy – is a testament to the power of resilience amidst the unpredictable waves of parenting a child with special needs. This episode is dedicated to every parent who finds themselves on a similar journey, as we offer solidarity and comfort in knowing that even in the depths of challenge, there is community and support ready to lift you up.
Navigating the often-uncharted waters of disability parenting, our conversation extends to the wider aspects of entrenched systems that impact families like ours. The frustrations with healthcare policies, the inadequacies of insurance systems, and the fight for necessary resources are all on the table as we discuss Sarah's own experiences within Illinois' challenging framework. It's not just a dialogue but a rallying cry for collective advocacy and systemic change. And amidst these heavyweight topics, we also celebrate the small victories, like achieving milestones and acquiring adaptive equipment, because joy and gratitude are just as vital to our stories as the obstacles we confront.
Drawing on her background as a special education teacher, she underscores the indispensable role parents play in shaping their child's educational journey. The chapter on empowering parents in special education reveals strategies for more impactful and collaborative IEP meetings, highlighting the importance of parents' insights and strengths. We conclude with a powerful message of hope and support, reminding listeners of the monumental impact they have in their child's life. We urge families to harness their innate strength, to lean into the support network around them, and to keep moving forward on the path to accessibility and inclusion. Share this episode with someone who could use a reminder that they are not alone, and join us as we continue to support and empower each other through every challenge and triumph.
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, empowered by hope, is here for you. Though we wish you didn't know this heartache, we're so glad you found us, so together we can walk this journey in hope.
Speaker 2:Hello everyone, welcome to the empowered by hope podcast. We hope everybody out there is having a good day, or at least you are getting through the day feeling like you're in a good place and you know what you want to get done. And if you're having a hard day, then we're here for you with hugs and love and know that it's okay. Your new day is coming tomorrow, so don't worry about it too much. But anyway, I am here somewhat writing solo, not really.
Speaker 2:Emily had some appointments to handle with Charlotte, but I had the opportunity to hop on here with this really, really amazing mom that I had the opportunity to meet a couple weeks back when I was visiting our friends Ali and Maggie from Believability which we've done a couple interviews with them, you may remember and I got to meet.
Speaker 2:Her name is Sarah Kalis and she was there attending a DMI intensive with her son crew, who, first off, let me tell you guys, this kid's eyes like I could get lost in them, and then his mom comes around the corner.
Speaker 2:Sarah, and I'm like I look like a hobo here you are at this intensive with your son and I'm impressed.
Speaker 2:You're not in your pajamas at this point, honestly, but you looked gorgeous and after getting to just speak with you a few minutes, I realized really quickly that you are one of those individuals who has figured out how to walk the tightrope of having hope, of having belief in your child but at the same time being able to accept exactly where your child is in this moment and celebrate that and acknowledge the truths and the hardships that come along with that. You know, setbacks and milestones can always be triggers for us, right? Nobody, you know exactly, enjoys those moments, but Sarah here just showed me this really beautiful perspective that she has on believing her son can do anything and allowing him to be the one to tell them what he's going to do. And no boundaries are placed on him. She's just giving him the runway to show them what he can do and when it's the right time for him to do it. So, without any further ado, sarah, I'm so happy to have you on the podcast here today.
Speaker 3:I'm so excited to be here. This is my very first podcast and I'm just so excited that it's with you guys. I love the mission and you know everything you stand for, so this is very, very exciting for me.
Speaker 2:Oh well, thank you. That means a lot, especially when you know one of them. You know a mom who's exactly our target audience feels the same way we do. Emily and I have been talking to several corporate sponsor potential contacts lately and what we have found ourselves saying is you know, we really just built the thing that we were searching for, because we got tired of trying to find something that met our needs, that could give us hope but also acknowledge the reality of the hardship, and after so long it was like, okay, let's just build it.
Speaker 2:And we love having parents come along this journey with us, because we're still going through it too. And I love stopping by the Believability Office because, honestly, it always just gives me so much joy, and I love meeting the families who are there. And, like I said, sarah, I just was drawn to you so quickly and I would love for you to share some of your story, maybe give us an introduction to how you joined our club as a medical mama right, the one you never asked for. But once you're in it, you're in it for life and it's a very close knit, strong ties relationship. So I'll hand it over to you Awesome.
Speaker 3:Well, my journey in the disability community started over 10 years ago. I have been a special education teacher for a decade and I have always just found this huge sense of admiring these families that are just in the thick of it every single day of their lives, and I saw that just as an educator, not even as a parent. And then I had my son crew. He came nine weeks early barreling into the world emergency C-section, the whole nine yards and I thought everything was fine For 30 days of his life in the NICU. I thought it was just feeding and growing and getting bigger until he had a routine head ultrasound at 30 days which found a brain injury. And I remember sitting in. I'm a my charter, I am reading records left and right, I'm Googling, I'm a researcher and I've seen things before that sounded kind of scary, like you know hole in your heart. Okay, you talk to the doctor after you spend hours on Google and you hear that's pretty typical for, like, being nine weeks early, it closes, Okay, cool. Well, I get a notification that they ran the routine head ultrasound while I was at work. I get the results and it says Periventricular Luka, Malaysia. And I was like I have no idea what that means. It sounds very fancy and I Google it alone. I think it was like seven o'clock at night, so no doctors were in the building, it was just me, myself and I and crew on a rocking chair. And I Google cerebral palsy is what comes up when you type in his brain injury, PBL, and I sat there and I was like what? Like they were about telling me he's going to come home soon and then all of a sudden, this routine head ultrasound finds this brain injury that nobody was like suspicious of. There was no brain bleed. His 24 hour head ultrasound was completely clear. And here I am reading on Google cerebral palsy and, being a special education teacher, I've seen kids who I've loved and like have had such amazing relationships with, have CP over the years. And now you're telling me my son is going to have that reality.
Speaker 3:And I sobbed for years and what felt like years. But for hours and hours and hours I just cried. I had a nurse find a doctor to call me and it kind of explained everything and what was portrayed to me is you know, there's a big risk, being nine weeks early, of having developmental delays anyway, and this just adds risk on top of it. But they couldn't tell me anything. They don't know what his future looks like, they don't know if he'll walk or if he'll talk or if he'll eat by mouth. And I just was devastated.
Speaker 3:And I remember sitting there rocking crew, thinking I can't be a special education teacher and a parent at the same time. And that's really hard for me to admit. But you know, a doctor doesn't come home and perform surgeries, A mechanic doesn't come home and fix cars on their free time. I was just sitting there thinking like how am I going to do this Like work with a special needs population during the day and then come home to a disabled child in the afternoon and the night? And that was really hard.
Speaker 3:And I gave myself 24 hours to lay in bed and cry. My eyes have never been like that puffy before. And then all of a sudden I woke up the next day and I was like why not me? Why not me? So I quickly went from why me to why not me and thought like who better to advocate for a child with a disability than someone who knows how to work the system from like the educator standpoint? And so that's kind of like my character arc into becoming a disability parent was like that one 24 hour period where I just gravely mourned to like, let's go, like let's do this, people Right yeah.
Speaker 2:Wow, I man, it's anytime you, so I call that like the moment of impact is what I refer to. That and every time I hear a moment of impact story it's. It is amazing how quickly you can just relate to, like the physical experience of receiving that news. Yeah, and so I'm curious. I know you said, like you gave yourself that 24 hours, which good for you, like I love that you allowed yourself that up front, that you didn't try to, you know, white knuckle it through. But after that I assume I mean, have you had other bouts of experiencing grief or you know what's your process been like, because I appreciate how you handle that up front. I'm just curious how that's gone for you since then.
Speaker 3:The first year I was a disaster on and off. The entire first year of crew's life. I went from being so grateful to loving him exactly where he was and then having these like twinges of oh. My friend has a baby the same age as crew and look, now they're rolling or now they're walking. And there's so much emphasis on milestones, the first, especially the first year of life. But then, going to two years, like for the first time ever, in December I was not handed a CDC milestone chart at his two year appointment. It's just so hard.
Speaker 3:And there is acknowledging where your child is at. And then there is that voice of what, if, like, what, if I had done X, y or Z or you know what, if this wasn't my child? Why does he have to live the hard life? And this kid is developing like they're supposed to be. And you know it's funny because when I had my daughter, I have an 11 year old daughter, kennedy. She's fantastic.
Speaker 3:I was a special education teacher when I had her too, and so I was excited about her milestones, but I didn't put as much emphasis in them as maybe some other people post. Like 10 months old, waving, clapping Mama. You know, like I always knew that there was that spectrum of like. Not everybody gets to the goal post the same way and so I'm just going to love her how she develops, which is typically developing.
Speaker 3:And then when crew got diagnosed, I was like I'm going to have that exact same energy that when he will do what he's going to do, when he's going to do it.
Speaker 3:Just like I, you know, didn't put pressure on my typical daughter, I didn't want to put that pressure on crew to be like come on, now we're going to sit, let's go, like now we should be, you know, waving and clapping. And I kind of combated those moments where I wanted to mourn and feel sorry for myself with being like, well, he can't do this, but look at all that he can do. And that's kind of how I like reworked my brain to not feel just sorry for myself and sorry for crew, because I feel like it's so easy to get trapped in that. What was me mindset if you let it, and I just it's exhausting being there sometimes and of course you have days where you are sad and you are mourning the life that you envisioned, but I don't want to live there permanently, and so I had to do a lot of work, even minute by minute, to not have that, you know, thought process all the time.
Speaker 2:Right, I love how you talk about the fact that, minute by minute sometimes and I think it is something important for us all to remember, to give ourselves that small of a scope to focus on, because it's so easy to be crushed by the onslaught of waves of terror and trauma and the what ifs and if onlys. And you know, emily, and I always say that to us, guilt is the real green eyed monster, because guilt is often a liar and tells us things that are not true. But if we can listen to it from the perspective of, okay, what are you trying to teach me? Or what are you trying to warn me? Let's look at you with, you know, my reasoning glasses that I'm currently throwing off into the street as I drive down the road. You know, what can I learn from from girl?
Speaker 2:And I remember when I felt really guilty about Emory's condition and learning about. You know, this is the time she was a baby and Understanding that she was going to have to have these really extreme surgeries that were very complicated and very painful and wouldn't be able to pick her up for over a month. And I remember thinking I'm a bad mom, like how do I not feel like a bad mom. I'm handing my child over knowing what's going to happen. Yeah, it felt so backwards, but then, you know, having other parents to talk to getting the thoughts outside of my head reminding me, okay, I'm doing the best I can. Surgery is inevitable for her. She does need these things and it's okay that it really really sucks to, that it really really hurts.
Speaker 2:Yeah, I'm curious. So we have been talking on our last few episodes about Snyder's hope theory, which it's not a shocking discovery by any means, and this is a old, long old, older study but it talks about the fact that when a parent can maintain a sense or a belief of hope Throughout the medical journey, the medical outcomes tend to be better for that child. Maybe not significantly, but quality of life is improved. And Emily and I are so passionate About helping families find hope and learning how to redefine what brings hope To the situation. So I'm curious where does your source of hope come from? How do you Pull on or what do you pull on when you are needing a dose of hope to inject in your situation, because sometimes it's easy to run low.
Speaker 3:Yeah, my sense of hope comes from the community that I've built, like the other medical moms. Some of my best friends I've never met in person, but we have a group chat and we text all day long. They step up and provide hope for me when I can't for myself, until I can be like, oh yeah, yeah, there is hope, and you know the same happens. Sometimes they lose hope and you know we swoop in and give it for them and so Acknowledging that I am never going to be perfect and just have rose colored glasses on all the time, but knowing that I have to find people in my corner who can when I can't, has been huge in this journey. And I always say I would not have survived that first year of crew without you know, my own crew, in the background of medical moms who have kind of done this a little bit longer and can give insight and hope. And seeing their kids gives me hope, and it's not hope that he's going to walk or talk one day, it's just hope that look at them living such a beautiful life.
Speaker 3:One of my girlfriends took her son in a wheelchair roller skating the other day and I was like what a genius idea To like find pockets of peace throughout your weekend that can bring joy and a smile on your kids face. Is crew going to put on roller skates and rollerskate one day? I don't know, but I'm going to push him and we're going to listen to some disco lights and some fun music and we're going to like in better own hope in our journey and it's going to look different than everybody else's, but that's okay, and so I mean hope comes from the people who have gone before me in the trenches.
Speaker 2:Yeah, which is such a huge component of what we want to do here as part of Charlotte's Hope Foundation. You're absolutely right and I really love that you just talked about. You know that there are times that you're not able to have hope, but allowing others to carry that hope for you yeah, you know, I mean sometimes I think that's a choice is acknowledging and accepting today I am not in the right headspace, the mindset it is not. I am not capable of feeling hopeful in this moment. But having the right support circle in place, having them hold hope for me and ready to hand it to me when I'm ready to accept it is such a gift and not beating ourselves up for it because, like you said, they're going to have those days too.
Speaker 2:Yeah, and I think that's one of the most amazing things about this journey, there's a lot of unexpected blessings that come from, you know, being thrust into this life. Nobody chooses for their child to have hardships, especially medical challenges, and set, you know, struggles. We all want our children to be perfectly healthy and happy and no issues, right? Yeah, but one that's not realistic. And to when you learn to redefine what a good life is and open yourself to exploring new ways to live life. I feel like I've had the privilege personally of gaining almost a look behind the curtain about the joys and beauty that life has to offer, that I feel like a lot of people take a lot longer to realize, if they ever do. Have you had any unexpected blessings or gifts occur since this journey began for you? Oh my gosh.
Speaker 3:I mean just believability for one, like what cool people to have in Cruz Corner and my corner. Yeah, I mean just like the work now that I'm doing, with the advocacy piece of it and the enlightening piece of it, of like what disability means and disability isn't bad, it's such value to society, the hope embedded in, like my career now, this like newfound sense of passion that I have being a special ed teacher. I mean it's just like tons of little things. I was getting crew out of his car seat and we just got a wheelchair adapted van, which was the biggest blessing in our lives.
Speaker 1:Oh good.
Speaker 3:I was taking him out of his car seat and I was putting him in his chair and I was like this is like the fact that I can so easily do this and like stroll him into our grocery store how cool, like what a fun experience to be able to bring my disabled child out into the community so other people can see him.
Speaker 3:Like I am changing their hearts is what I kept telling myself. Like he is cute and happy and laughing, and just happy to be there and go with the flow, and that gives me a sense of hope. It's like I've got to find ways to like soften the hearts of society around me, and what better person to do that than crew and all of our other little friends that have disabilities? And so finding little moments of peace and hope have been huge for me. And even just like switching him from his car seat into his wheelchair in our new van that's equipped to like make life accessible for him was like such a profound moment, and that just happened yesterday and I was like we should have more of crew, like we got the van Hello.
Speaker 2:Yeah, I love that. I thank you for sharing that and that's definitely a really big win to celebrate, for sure. I'm sure your back appreciates it too, like physically, I'm sure that that's a huge improvement. I want to go backwards just a little bit. So, for those who aren't familiar with believability, they are the group that does a combination of physical therapy and occupational therapies to do what is called dynamic movement intervention, and I would just love to hear what was your experience like, kind of from start to finish, like, did you feel like you came into it having expectations? Was it what you expected? Not at all. What?
Speaker 3:was it? Like I had no expectations and at the same time, it exceeded every like expectation I thought I didn't have. It was honestly one of the most remarkable weeks of our journey thus far and what a positive place Like. What two positive women and I'm getting like emotional about this. I just love Allie and Maggie so much. They embedded such hope in every single session with crew and I had like an intake call with them before we went down there and I said you know, I don't really know what my goals for crew are. I want him to, you know, get pre-development skills to sit and the pre-development skills to start to stand a little bit better. Or, you know, find motor skills so he can, like, truly feed himself. I just I didn't want lofty expectations and so I set them really low and the first day that Allie assessed crew she was like we might need to like make new goals.
Speaker 3:And I was like sure, and it just was truly the most remarkable week ever to walk away and be like. This is crew's body, this is what he's capable of. These are attainable goals that we can start to set for him and they made it so user friendly for us to implement at home and like what a wealth of knowledge they just shared with my family that I can take crew home and continue some of these exercises, and my daughter even continues some of the exercises, and the therapy world can be like a little cutthroat or secretive sometimes, and so just the fact that they were willing to share like what they went to school with for years and years and years with families is, I don't think people realize like how like valuable they are to this community of kids with disabilities and I just love them so much.
Speaker 2:Well, I know the feeling is mutual. Ali and Maggie could not stop talking about you and, of course, celebrating crew and his amazing week, and I think you guys plan on going back again, right?
Speaker 3:Yeah, we'll be there end of March for another one, and I was just looking at maybe some wait lists in August before I go back to work or waiting to see, like next January when we're okay. So we will not be gone forever.
Speaker 2:Well, good, well, good, well, I'm super. That makes me so happy. I think, ali and Maggie, this is feeling like an infomercial for them, and well deserved. But I think one of the coolest thing is that they literally demonstrate why it is so important not to place limits on your child, why it is so important to, yes, listen to your medical professionals, but it's not finite. What they have to say and you know studies say is a phrase that, in my opinion, can just be thrown out for good.
Speaker 2:I have no desire to hear what studies say or statistics show, because every single child is truly different, truly, and I think when we walk in with a low bar and when we create a box around our children, how are they ever going to explore outside of it if we don't give them the opportunity? So bravo to you for doing that, because I know it's a big deal to go somewhere else for another week. I went to another country for six weeks. It was a lot, yeah, but I'm so glad you had such an amazing experience. You also mentioned that your advocacy work that you're doing, so can you tell us a little bit more about that, yeah?
Speaker 3:I quickly realized the amount of red tape and closed doors that there are between private insurance and even our friends that are on Medicaid and have SSI or whatever the social system is in place. It's just not easy. It's not easy to navigate or understand or advocate, and I came from this position where this is what I do for a job. I advocate, I research, I case, manage for my students at school. This should be easier for me. And when I was realizing that it's not easy it's, quite frankly, a major headache in my life. I was like can you imagine being the parent that has no affiliation with special education or disability work before having a child that has a disability? And I became enraged at systems in place. And then I kind of gave myself. I go through this like you have 24 hours to be upset about this, and then we've got to do something about it.
Speaker 3:And I live in Illinois, where I kind of kick myself, because my husband was in the Army prior. So we've lived in Hawaii and Colorado and we had just moved from Colorado in 2018 way before crew was ever like a glimmer of our eye, and I remember being a special education teacher in Colorado talking to families about all of the great systems they have in place not perfect by any means, but systems that are in place for families that have children with disabilities, that are set up for them to succeed. And I started looking for those in Illinois, like, okay, I remember hearing about this, where are they? And there's, quite frankly, nothing for a family like mine, a family that makes more than the income requirements. And crew, as disabled as he is, is not technology dependent. So no G tube, no oxygen support there's nothing for him. All the waivers are based off of an archaic point system where they basically deem your child disabled enough to have access to even Medicaid as a secondary. There's nothing for my family.
Speaker 3:And I have called, I have written senators, I've made TikTok and Instagram videos, I've tagged my Congress people in videos and just endless work trying to advocate. And then I live an hour from the Indiana border or I live an hour south of Wisconsin, where they have better systems in place, and I just don't feel like I should have to uproot my family to get my kid what he needs. And that has been a current frustration. But I have to tell myself like, okay, well, right now, early intervention is great in Illinois. He is getting the equipment he needed needs Now, granted, it's ending when he turns three. But how can I continue to live life and find joy and gratitude while slowly trying to make these changes for myself and the other families that desperately need a little bit of support?
Speaker 2:I'm sitting here processing what you just shared, and I even have to take a deep breath to kind of cool myself down, because it's something that I just frankly do not understand. I come from a family. I am a third generation mother to a child who has medical complexities just by total lack of the draw, and starting with my uncle who was born severely brain injured due to birth trauma, and then my brother was diagnosed with hemophilia and that was found shortly before a tumor was found in his spine, and then obviously, I had my daughter, who threw us for another loop, this lottery that we keep winning. I would like to play a different one, but at the same time, like you said earlier, if not us, then who? And it's now the greatest honor to work on this.
Speaker 2:But there are a lot of things that make you shake your head, like what you were just talking about. I'm curious what is your advice to other parents who talked about writing letters to senators? Do you feel like reaching out to senators is where? Or reaching out to politicians is that where you've put most of your efforts? I'm curious what you would recommend to other families, maybe whether it's in Illinois or other areas who are trying to figure out. Hey, I've got this fire to do something, but what do I do? Who do I?
Speaker 3:talk to Exactly. I think the writing of the senators was an actionable step that I could take easily from home. The more you put out a video and you're located in Illinois, the more disability families in Illinois have slowly been connecting with and I feel like power and numbers. Let's go. Let's go down there one day. Now that's so easy to say when we all have specialty appointments and germaphobes and you know everything about like okay, well, when is your schedule gonna line because we just got over an illness and then I have a specialty appointment next week. Like I really want to get down there and talk to the people who can make the change.
Speaker 3:And when you look at, the funny thing about disabilities is it's a small percentage of the population, but it's a percentage that we all are going to enter one day if we plan on getting older and becoming healthy. And I tell people all the time like this is like a niche club, that we are all one illness, injury, disease, accident away from joining ourselves. We always say it's not gonna happen to us, it can't happen to me, but the reality is is every time we drive our car we are a step closer to joining this club. And when I advocate. I don't just advocate to the families of disability because I need Backup. Like I need the typical families to support me and my cause, because we as disability families already have so much to do. We have so much on our plate. Like I need power and numbers from our friends and our families and Perfect internet strangers who just care enough about our kids to help me in our.
Speaker 3:You know our fight for you know equity and access. You know when you're looking at the, the waiver system in Illinois, it's so ableist, like there's so much ableism embedded and like rules and procedures and you know regulations that we need disabled voice in Congress and making the decisions that benefit and impact people with disabilities because they have a lived experience that people in Congress like don't understand unless you're living in. And that is my biggest message to you know my advocacy work is this can happen at any time to any one of our loved ones or ourselves. Like please get on board with us here, because Inclusivity and accessibility really impacts us all and we should want a society where caregivers are taking care of and are you know Disabled individuals are taking care of. Like don't you want that with us? And I think that's like where I'm at in my journey is. I've got to recruit numbers to get down there and like, actually like in person, make, make strides in this situation.
Speaker 2:I'm blown away, sarah. I Definitely want to make a point of sharing this site. You got me thinking. You know a lot of we get asked the question a lot by people who don't have a child, with medical complexities how can I be helpful? You know, and a lot of times I think they're they're coming from the angle of how can I help a specific friend, how can I help a certain family member? But I love what you were just talking about. You're so right and Truthfully, I experienced that myself when my dad suffered a massive stroke.
Speaker 2:Labor Day weekend 2018. He went from, you know, living out on a seven thousand acre ranch in Nebraska by himself essentially, my parents are divorced to having a shocking stroke that took out the entire front of his brain and he was never able to move his body or walk or speak on his own again and he lived almost two years like that and the fight that it required for basic therapies and you know they kept saying, well, he's not going to get better. I'm like it's not about getting better, it's about his quality of life, like I'm watching his body become more and more crippled and his pain levels go up, because it's not good For your muscles to be contracted like that all the time. It's not good for you to never experience standing up. You know all these things and it was, but it's just what you said. Honestly, it's got me thinking like I hadn't really even thought about it from that perspective. You're absolutely right. It could be any of us at any point, and the more we band together, the louder our voice and you know I'm such a believer in giving a voice to the voiceless and I'm definitely going to be listening to what you have to say. A lot I'm going to have to. We'd love to share your handles and be able to follow you on this journey, because I think you are a very, very natural leader and you've got something that people need to hear. Thank you for doing that. It's it.
Speaker 2:It blows my mind how many people I've had the opportunity to talk to who, in the midst of the hardest storm of their lives. It's like your passion and your purpose all of a sudden become revealed. Yeah, and I Know that's that's something that gives me hope is sometimes is helping me Fight the why my kid? Why our family? Or why my friend's child, why your family? Because I hurt for others.
Speaker 2:It's amazing the depth that you feel for others, like why are they going through that? Why is Charlotte had 18 surgeries? Why did crew have to have this brain injury? Like you said, you're a special you know special education parent. Like, aren't you already paying your dues? And I don't mean that literally, but it's hard not to have those thoughts. But hearing the work you want to do, that you're already doing, I Just think it's amazing that that people can take their pain and get their power back by Harnessing it into a purpose greater than themselves, and it's just such an honor. I mean, it never gets old meeting somebody like you who is saying you know what I see your problem, so I'm gonna do something about the problem.
Speaker 2:Yeah, a lot of people who see problems and we'll talk about the problem, right, but those who are brave enough to stand up and say, no, let's do something, whether or not it's, it doesn't have to be easy, and I mean crew. Oh my gosh, how can you not look at him and be totally inspired? I'm not kidding you guys. This guy's eyes I was like mesmerized by how beautiful he is I.
Speaker 3:It's funny because Shortly after I had crew, he, you know, we live in a community that has an HOA and a community pool and in that community pool there's only two ladders in and out of this pool and I'm, you know, here crew is a newborn for, you know, essentially just a teeny, tiny baby, and I'm trying to get in and out of this pool with him on two ladders. So I'm handing him to my 11 year old, I'm getting in and I'm like repeating the process in and out. And so I went to the HOA board and I was like, can we get some steps in this pool? And they were like, well, we don't. People have asked for years and we don't have to follow ADA. And I was like, yeah, you don't have to because you're a private entity, but shouldn't you want to? And that's when I kind of was like, wait a minute, like the systems in place, like there are so many trapdoors out of disability law that people can, you know, get away with doing the bare minimum.
Speaker 3:I talked to people in my town all the time about like can we remove wood chips from parks? Like, can we make it inclusive? And I keep just hearing what meets ADA standards. It's like meeting something we can exceed as a society and we should want to succeed and exceed as a society. And so I spoke to my HOA board on behalf of everybody. Like my husband has been wearing the disabled veteran you know tag for years now. He's not as physically limited as crew limited as crew is, you know.
Speaker 3:But I was like people with vision impairment, sensory issues, people that are overweight or have arthritis and have trouble holding onto ladders like we should want to make this inclusive for everybody, and they fought me tooth and nail. I reached out to the builder of our community and the builder of our community actually donated the funds so that we can get some steps into this pool, and I cannot wait for this summer Because it goes back to inclusion and accessibility benefits literally everybody. I can guarantee you there is gonna be more people using those steps in and out of the pool Than the ladder, and typical people too, and I wait to see it. It's gonna be like a ha, defining moment in my life. I'd be like, look, the majority of the people are using these steps. We should always have an accessible entrance because it literally benefits anybody who wants to use it yours, wow, okay, another really Amazing story you have.
Speaker 2:I mean, I'm so inspired right now I'm my mind is racing. What I kept thinking as you were telling that story about the HOA which, first off, actually kudos to the builder, whoever this was major kudos to them. That is amazing. And what I kept thinking over and over, though which you would think is such a simple Way to live life but it's not is do better or no better. Do better, right. That is what I am constantly challenging even people in the medical profession, or insurance, or therapy or, you know, schools, etc. Things like that.
Speaker 2:You know I I'm really passionate about the trauma that is experienced and minimizing the trauma that occurs during medical procedures in medical institutions, not only for the child, but for the parents as well, and you know one of my things that I've been talking about a lot the last year that's gotten attention is how can we have all of these studies that show all this research that it is very real and has a Profound impact on health long term? How do we? What's the point of all these studies In claiming you're one of the top research, you know hospitals and this very robust studies and stuff, but yet you're not doing anything, if any, differently. So now it was great to tout that you were researching these things, but now it's time to take the step forward and do something with that.
Speaker 2:Research we have and I feel like that's what you're shining a light on is Like that's a perfect example. We know better, we know that that is needed, we know that that is helpful. So therefore it should be done. Yeah, and Good for you. I feel like you are a superhero in my eyes. That is, I have a feeling everybody who's listening is kind of like you know, punching the air like you go, mom, yeah, well I, it's just so eye-opening.
Speaker 3:And my husband, who is Is knew nothing about disability inclusion, kind of just listened to me, for you know 10 years talk about my job, loosely not really understanding. He'll even be like you know, there's steps at the front of that entrance, like where's the ramp into that entrance? And like now he's starting to open his eyes to everything. And I tell people and I'm like, did you use an escalator at them all? Did you hop in the elevator? Did you hit the, the button that opens the door, because your hands were full? Like did you step up on the curve or did curb, or did you walk around to where you know the curb is? You know flush with the ground?
Speaker 3:And I'm like all of that is Accessibility that benefited you as an able-bodied person. So you join us in our fight truly making the world accessible for not just my son but for your elderly grandparents. Or, you know, your sibling that has a sensory processing disorder, you know anything. Like your cousin that was in a car accident is just temporarily in a wheelchair. Like you should be fighting for everybody and I think that's that's where I need to draw my focus in kind of recruiting into this advocacy work of mine is not targeting the overloaded families that are already burdened with so much system. Wise and really kind of recruiting our able-bodied friends who can join us in the trenches.
Speaker 2:Well, I'm comfortable speaking for Emily about this. You have us on your hook and we want to know more from you how we can help spread that message of recruiting those families, and I know I have a lot of family members who would be more than happy to make some noise in that regard, and a lot of friends too. We're going to make sure that this gets shared a lot so that way more people can hear that message. Gosh, I am just so thankful for the way that you've chosen to live your life and to make it such a I don't even know what the word is right here. You can tell I'm struggling because I'm just overwhelmed by how much you've been able to do and here crew is what just turned to and I love your work.
Speaker 2:As you know, the fact that you've been in special education, I feel like it's obviously equipped you in certain ways. I do want to touch on that here. Is there anything like you know? I hear that and at first I'm like, oh man, that probably helped you a lot. But at the same time I know that, like even in my experience talking you know, like I had been around people with disabilities all my life and my family had a nonprofit.
Speaker 2:I had an uncle who never spoke a word, who was severely autistic, like had seizures like that. I was used to that and I always say I learned more from him, the person who never spoke a word, than I had anybody else who ever, you know, talked to me, yeah, and but even though I thought I understood what it felt like, it wasn't until I had Emery and I got the words like she's going to need major medical intervention, it's going to be very painful and complex and we don't know. You know there's no real cure for it, it's just attempts, and there was nothing like it being your own child. So when you went through that, that experience, were there things that you feel like what did help you from having been, you know, around this for so long? And then, is there anything that you wish that you had known when you started the journey?
Speaker 3:I think what helped me was it sounds silly, but like the the inherent tasks of being a special ed teacher keeping data, advocating asking for what you need, not taking no for an answer. I think like all of that is embedded somewhere in special education and what I wish I would have known is how, you know I I've worked in different areas. I came from a very inclusive general education co taught area and now I'm working in with more of a severe needs population and I wish I would have known the journey of the parents that I, you know, case managed and taught their kids the 10 years prior of having crew. I am so blown away by the families of the kids on my caseload. I tell them all the time. I was like I am so new to this parenting journey and you've been going at it for 13 years now. They are the experts of their children and, just like I, want to be seen as the expert of crew.
Speaker 3:Yeah, I have special education background and I know a little bit of law and regulation regarding, like K 12, you know public education, but I did not value those families and their voices nearly as much as I should have before I had my own child, and so that's something that I would like to caution to the special ed teachers out there that maybe don't have the parenting hat on as well. Is your parent like? Trust your parents? They nobody has your kids best interest in mind more than you sitting at that table, and that was a profound moment for me. Switching to this more severe needs population and being a parent at the same time. It's like whoa, I could have done this way better. You know all these previous years, like now. I really need to move forward and honoring the expertise of the parents of my students.
Speaker 2:I think it's really impressive. I give you a lot of credit for sharing that. You know that, you know that, learned lesson about the parents voice and we talk probably, I feel like at some point every episode about. If there's anything that we can leave people with, it is to remember nobody knows your child better than you and, like you said, nobody's going to have your child's best interest at heart more than you. That is something to trust, that is something to listen to and never discount your value at the table for your child and in fact, you deserve a seat at the head of the table in our opinion.
Speaker 2:And that's with teachers, that's with doctors, that's with nurses, that's with anybody who is coming into your life and having any role in your child's life. And I applaud you for you know opening your perspective to that and I can only imagine how much both your students and those families are benefiting from that shared, that new perspective that you were able to gain, because that takes, you know it's that probably wasn't like the most natural thing to do. I mean, here you are, you know you're fighting for those kids, but I'm sure that it could be hard being in the teacher's position and knowing what you know and having all the experience of having taught lots of students, so you're bringing that experience. But giving a voice to the parents is such a gift and it benefits everybody.
Speaker 3:I want to start, because the entire essence of special education is built around deficit. Like the entire conversation is driven by what they can't do and how I'm going to get them to do it. And I I look at that approach and I'm like that is not parent friendly. That is adding trauma on top of trauma. The other day I had an IEP meeting and the mom sat down and it was immediately teary eyed because for years and years and years she's been invited to these meetings where we just talk about what your kid can't do yet and how we hope to get them there.
Speaker 3:It's like, no, let's talk about how awesome your kid is. Let's talk about an in parent friendly language that isn't scary and turns you off to being a heard member of the team. Let's talk about how like fun your kid was in electives the other day or how they turned a bad day around to a good day. Parents know I know the deficits of crew. I do not need to sit in a meeting and listen to experts in the field tell me everything that I already know. And yes, there is a component of you know. Legally I have to write this into the IEP, but the parents know exactly where their kid is at. I don't have to traumatize them further on top of all of the trauma that they have experienced having a child with disability at an hour long IEP meeting once a year Like let's make this collaborative and productive and positive as well.
Speaker 2:What advice? I think this is a great question to end on because I could keep. I've got so many more questions but I don't want to take up all your time this evening. What would your advice be to the parent who has an IEP meeting coming up when their child is in special education? And let's say they don't have a Sarah for a teacher, they don't have somebody who realizes that. What could a parent do from their position to you know, to step into that meeting with more confidence or maybe to change the direction? If they've experienced meeting after meeting that's been negative, what would your advice be to them?
Speaker 3:My advice is reach out to the special ed teacher, like throughout the writing process. So you know like you have to have a meeting once a year it falls around roughly the same time, like a month prior say hey, like just wanted to check in, how are you, how is my student doing? Can I help you with, like, any ideas for accommodations? What I think that I would like to see as part of the IEP? I, you know I wore my parents all the time that I'm gonna bother them endlessly, but I, you know, I just had two parents where I heavily was messaging them what about this goal? What do you think about working on this versus what they were working on? You know they didn't quite meet that goal, but I think I can make it more conducive to their life and and really inviting yourself into that writing process. It might feel uncomfortable but it's going to be so beneficial in the long run if you sit down at that meeting.
Speaker 3:Having already collaborated about the writing process and as a special ed teacher, you are an expert in writing the legalities of the IEP. But I need parent voice on how I'm gonna write it. I want to know what the parents goals are for their kids what they want their kid to be working on, like, yeah, anyone can be working on reading, writing, math, but how do you want reading, writing, math to be applied to their world? And so my biggest advice for parents is Open that line of communication right. In a perfect world it would be the special ed teacher reaching out, but in you know, and if they don't send them an email, hey, I have a feeling you probably have my kids IEP open. We're coming up on the annual meeting. Can I help? Can I, you know, bounce ideas off of you. What are you seeing? This is what I'm seeing and really like, force your way into being a collaborative part of that Process.
Speaker 2:In writing in that makes so much sense. So it's, you know, I feel like I I Do that even when we have really big appointments coming up with a specialist, and I know it's just limited time and Sometimes it's so hard to get all your questions asked. So I've gotten to the point where I start asking questions ahead of the appointment and I'm like, can I get this response in an email? Like let's carve out half of the things that I want to address before I even see you in person, so that way, at least, by the time we actually come together, you know where my head is, you know where my focus is, and then we can really be productive with this meeting. That's really smart advice and you know, I think there's always a way to to do that, to become a collaborator.
Speaker 2:But see yourself, as everybody is on the same team, and I think it's easy for us sometimes to put, like you know, the teacher on a pedestal, or a doctor or a therapist, but put those pedestals away and Take a seat at the table and then you know, just, you are the head coach, yeah, of your team and everybody is there for your child's best interest. If they're not, it's easy to we it tends to be fairly easy to weed those people out. But yeah, the sooner you get in there and establish a relationship, the easier it would be. I can see to you know, to build positive change into how things are handled and Ultimately, I would assume, lead to more hope and and just an improved quality of life and experience for both the child and the family and hopefully the teacher too.
Speaker 3:Yeah, absolutely for sure.
Speaker 2:Oh my gosh. Well, sarah, I cannot thank you enough. You are an absolute fountain of knowledge and zest and fight and mom-vacate and Love them. I'm just mom-vacate, slash, mad-vacate when necessary, and I say all the time we need to make shirts that say I'm not, I'm not a regular mom, I'm an advocate mom. And, yeah, shirts coming at some point, don't hold me to it. If you beat us to it, it's fine, but thank you for giving us your time, thank you for sharing your story and your encouraging words. If anybody has listened to this and is really inspired and wants to learn more about how you can advocate for special needs and Disability in your own state, feel free to send us a message and if we don't know what the answer is, we will get with Sarah to help point us in the right direction. At least give us some guidance on where to look. But, um, yeah, we can't wait to get this, this message, out there, because you shared a lot of really, really valuable information today. So thank you for that, sarah.
Speaker 3:Thank you for having me. This is so exciting.
Speaker 2:You bet. All right, I think you'll be back again. I'm always big on repeat guests because I just want to know so much more and I guarantee everybody listening wants to know more. Do so with that. We hope you received, you know, a powerful message of hope today and that you feel inspired to take a seat not a seat, but the head seat at the table for your child's future. And you can do it. We believe in you and you were made to do this.
Speaker 1:You are capable, you are equipped and you are not alone. Together, we can do hard things for our children. If this episode connected with you and you want to hear more, be sure to hit the subscribe button. We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlottehopefoundationorg. And, last but not least, if you know of someone who could benefit from this podcast, please share. Strange grandson in an evergreen area, apparently.