MCIE What if school leaders instead of saying no to inclusion, as they often do said yes. Today on Think Inclusive a mother tells what happens when leadership says yes to inclusive education.
My name is Tim Villegas from the Maryland Coalition for Inclusive Education, and you are listening to Think Inclusive, a show where with every conversation we try to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. You can learn more about who we are and what we do at MCIE.ORG.
For this episode, I speak with Mary Beth Moore, author of the book: Unwanted: Fighting to Belong.
Mary Beth Moore is the founder and executive director of The Advocacy Underground, a nonprofit dedicated to supporting the authentic inclusion of students with disabilities across all educational environments. She studied political science and criminal justice at the University of North Carolina at Charlotte before joining the U.S. Marine Corps. She served as an intelligence analyst for the Department of Defense for several years, and then transitioned to a marketing leader in the high-tech space. She uses the storytelling skills gained as an intelligence analyst and marketing leader to make the complexities in special education law and research more consumable by parents and educators alike.
Before we get into today’s interview. I want to tell you about our sponsor, Together Letters. That’s right folks, we have an official sponsor! So exciting. Are you losing touch with important people in your life? Are you part of a group that's drifting apart? TogetherLetters is a tool that can help. It's a group email newsletter that asks group members for updates and combines them into a single newsletter for everyone. All you need is email. No social media required! TogetherLetters is great for families, work groups, book clubs, friends, and us! We are using Together Letters so Think Inclusive Patrons can keep in touch with each other. Groups of 10 or less are free and you can sign up at togetherletters.com.
Thank you so much for listening. And now, my interview with Mary Beth Moore.
Mary Beth Moore it is a pleasure to have you on the Think Inclusive Podcast. You wrote Unwanted to tell the story of you fighting for inclusion for Gavin. So why don't you go ahead and let our audience know about the book and your story.
Gavin just turned 10 years old. And so the book is really a reflection on everything that we've been through over 10 years, really starting with fighting for his right to life with medical staff, and then fighting for services, and then getting into preschool and education system. And so our fight began around the access to feeding therapy and appropriate nutrition in school and then an extended into inclusion. I think anyone in the fight for inclusion is very experienced in receiving the answer no, no to services, no to even evaluations no to implementing things a certain way notice support no to accommodations, no to modification. And Gavin story certainly started that same way. And it was a very persistent trend. And then there's a pivot. And it's just I really wanted to tell the story of what happens when you tell a family Yes. What happens to a child who is finally said yes, you You are wanted in general education, you are worthy of being in this environment. You do belong here. You do deserve these medical interventions you do so deserve this support, you are worthy of all of it and you're wanted exactly as you are in this world. And that that's really the heart that I brought into the story because I think it's important that for people who are outside of the world of Special Education and Disability Rights in general to understand one how pervasive things are, but to to see a real person behind it. Because our external world does a great job of turning us into numbers and statistics, but to talk about the people and then So His story is really about Gavin has multiple medical complications. And he has multiple diagnoses, he has Down syndrome. He is nonverbal. And he's in a fourth grade classroom right now. And he's still working on learning letter sounds, and counting to 20. And when people hear that, it's a little shocking, because but wait, he's nowhere near grade level. Right? And he's thriving. He doesn't have to be near grade level. And now we see it in the real world of inclusion working have a child who does have what would be considered in the system as significant disabilities, who would have gone historically to an ID an intellectual disability, severe classroom. And now he's in Gen Ed. And he's thriving because someone said yes to him. And that's really the crux of this book of look at look what happens in the world when we stop saying no, and start saying, yes.
What is different about how Gavin is supported, versus other students, either in that school or in your district that have an intellectual disability.
So I'm in meetings with many parents across the district, and I often have to use Gavin's story to tell to show them that inclusion is possible, because we have classrooms that have a label of intellectual disability. So if you have a diagnosis, that's where you go, that's been the historical trend. And so it's not the norm. And I'm, I've always been very aware that when Gavin entered preschool, and we were fighting for feeding therapy services, I filed a Department of Education complaint against the state and due process against the district. And I was successful with both. And that all happened was coming to a resolution right before we began our kindergarten transition, the head of our special education department at the time, had come up to me and said, I can't fight you like this for 12 more years. I don't want this to be a fight for 12 more years. And I said, my son is not going to an ID severe classroom, he is going to go to school just like his sisters, he's going to go to school with his sisters, and he's going to go to his base school. And then there was never a push back from there. It's something that I had set up ahead of time saying, I'm not a parent who's going to be told no, my son's going to have these opportunities, he's going to get what he needs. And so I think it's a little bit different is that I found success, I had elevated our issue outside of the district, I had found support and success outside of the district and outside of the state, and then been able to say, Okay, so now that we're clear that I've learned what you're supposed to do, and I'm gonna hold you accountable. We haven't really had a fight since then. And but it's frustrating because I could go to a school, five minutes down the street. And a child who is much closer to grade level, who doesn't need nearly the support my son does. And the staff is just saying, we're making too many modifications, we're having to do too much work to be assessable. And it is in the same district is in the same town. It you could walk from school to school and have a completely different experience.
You alluded to it, but do you have any specific stories that you'd like to share for our audience about students who have run into that leadership? saying no?
Yeah, so I think that again, in our case, the fact that leadership said yes, is what has turned everything around. And oftentimes, I'm just shocked by an unwillingness to help a child. There's a family I've worked with where this student has not stepped foot into a physical school building in three to four years. Because the district has not provided a registered nurse, there is an ability to provide services in the home, but they didn't have a nurse, they required the mom to fulfill the role of a nurse in order for a teacher to come in. The mom said, Well, if I can be a nurse in the house, why can't you count me as a nurse in the school so my child can have friends and go to school, and they wouldn't allow it. And there was an educator that said, I'm comfortable going in, and I go in and teach. And the leadership just said, No. And so we have a child for years, with no education. None. And it stems from leadership, not willing to be creative, not willing to support their staff who has to have solutions who are willing to do things who want to find a way ahead. And then there's another family I worked with a girl who had multiple disabilities and behavior struggles and she found going to school traumatic and would physically injure herself to avoid going into school. And in that case, the mom had suggested can this teacher this one teacher that she has a relationship with, so that she trusts could she meet her outside and she walked in because she meet her every day. And for a couple of days that worked, and there really weren't incidences, we were trying to build up stamina to go to school. And then in that case, the principal came back and said, We don't have time for the teacher to do this. She has other students, she has another class, we're just going to have to another staff member is going to have to meet her. So the behaviors escalate, the child harms herself again, and can't go to school. And in that situation, I'm looking at that principal and just thinking every other student in your school, though, isn't having a trauma response right now, every other student in your school has more than one person in this building that they trust and feel safe with. And it made me think about how much we talked about schools and the need for mental health professionals to address the trauma walking in through the doors. But we don't talk as much about the trauma that our educators create within the walls of this, these schools, by the way, they're treating children with disabilities. I think as adults, if we were to enter an environment where we didn't trust anyone, there was one person we trusted, and we felt safe with and there was no one else like that, and you took that person away from us, we would react as well. And those teachers, and the administrators like to position it as if they're doing a favor, right, we're going to do a favor by allowing this teacher to help you in these couple of days, we can't do it anymore, right, we're not going to really address the issue or do something nice. And then there's a sense of shame that is put on you and a sense of gaslighting, it's heavy to say there's other students to worry about your child isn't the only one we have to think about. Your child isn't the only one who needs support, your teacher has other obligations. And all of those are understood that and what do we do as parents because our job is to protect our children. And we see them in an environment where they don't feel safe. But we're obviously legal, legally obligated in this country to send them to school. And now they can't go without harming themselves and the school. It's been different, like well either figure it out, or they can't come. There's nowhere else to go. And at the end of the day, the cost is a human being. It's the family, it's the student and I in these conversations, I think what if you guys just took a chance and said, Yes. Let's have a strategy to build rapport with other adults. Let's see how we can get this child into school with with nursing assistants, can we get a school nurse to come and just help for a couple of days? Can we get them in the building? Can we get started? Instead of just saying no, and throwing up your hands and and costing kids? They're a huge chunk of their childhood?
Whether you're a family member or an educator, how can we not look at school leadership as the enemy in this, you just mentioned two opportunities for leadership to say, yes, we're going to provide services in the home. Yes, we are going to set aside this staff member for an indefinite amount of time so that the learner can go to school. But instead of saying yes, they say no, and they draw a line in the sand. They say, if you don't like it, then you can fall for due process, you can do something else, you can go jump off a cliff, whatever it is, right? How can we not look at them as adversarial.
It's hard because as a parent, they're messing with your child's well being. But if we were to think about this in enemy in terms of like, bigger conflicts, like wars, right, we would never turn our children over to our enemy for six hours a day. And in this case, we have to turn our children over, they have to receive an education these are this is their communities as impactful time in their lives. And outside of the public school system. We don't have anywhere else to go, there is no other option where to send them so we don't have the luxury of turning educators into our enemies. I do think I believe in that idea that when we know better, we do better. And I think oftentimes, as parents, we assume that because there's this overwhelming history and amount of legislation and judicial interpretations and research on inclusive education and in some ways, just like the principle of simply being human, that our schools have to know they have to know that the forced segregation of children on the basis of disability is wrong, immoral, unethical and inhumane. We assume they have to know but they don't like when I'm in in so many different meetings and It's so clear to me. They don't know they're not aware of all of these things. They're responsible for implementation and compliance, and they don't even know compliance to what. And so the first issue underlying it is the entire framework of special education itself. determining eligibility for services or defining your interventions documenting a child's educational plan, the entire focus is on a child's deficits. How does this child not measure up to a child who doesn't have disabilities? How is this child underperforming compared or in line with standards that have explicitly been written for children who don't have disabilities? Right, everything is about a deficit. And then the second issue is the difference in perspectives of what inclusion really is, and what special education really is. And we know inclusion is not synonymous with independence, it is not synonymous with grade level performance. And special education is not synonymous with a specific room, or a specific type of curriculum. We know that. But understanding that cognitively and believing that with conviction are not synonymous, either. And when we look at someone's beliefs, we look at their environment. And so from a school perspective and a teacher perspective, do I have what I need? Do I have the education I need to understand the strategies I should be using to know what the laws say, to know what best practices are that I should be using? Am I getting paid enough to err my basic needs being met from a financial perspective, from a health perspective, there are general generational differences that come into play as we look at different ages across our education system and how people were raised to view people with disabilities. And so an example for that might be people who believe from earlier times that discipline will make the change, you just need more discipline, you need more rules, you need more structure. And when you have these factors, and you don't have the education and the training and the support you need, you start to feel frustrated. And overwhelmed is a very human response to a situation like that. And then you couple that with the cultural expectations that sit within our education system. So things like we care about how you score on assessments, we care about standardized state testing, we care that a child can sit in a class and listen to a lecture and complete a worksheet. And all of those cultural expectations are set by people who don't have disabilities, or children who don't have disabilities. And so that environment and that those cultural expectations reinforce bias, that students with disabilities cannot function here. Because everything is not designed for them to function. And so there's got to be a shift. And so when I say we can't make them, be our enemies, I think we want educators to see our children as people, and we want them to give them grace, and believe in them and try and treat them as a human. And there's a point when we have to do that as well. And sometimes it's starting with finding common ground, because a lot of it when we're scared to change or based on is based on fear. What if I do something wrong? What if I get in trouble? What if I lose my job? What if the parents get mad at me because I want to try something and it doesn't work. Or you have to work and cultivate relationships on both sides, calm some of the fears on both sides become vulnerable and approachable and know that this is our and science as far as the education of all children. And so there's got to be trial and error. You have to be willing to make mistakes and learn from them. But you're not going to learn from doing the same things over and over again and never try something new.
I haven't asked a guest this in a while. But we have not. Ida has not been reauthorized. And I think it's 15 years now. It's either 14 or 15 years. And do you think that it it's a matter of we need to change the law? Or is it we have everything that we need to make the changes? Now we just have to implement the law? In your opinion. Yeah. And
my opinion, is the latter. And I will say, because when you read the law when we have elements of the law we can use. It's strong. It's been strong since 1975. And it's continued to be strengthened. What hasn't been strengthened is accountability. And I think for most of us in the course of our everyday jobs, if we were to regularly and systematically violate the human rights of people, of children, specifically The minimum expectation would be you're fired indefinitely, right? You're not coming back. But it wouldn't be a stretch to assume there'd be criminal penalties as well. But in education, it's a way of it's become a way of life. And then people are promoted. And they're celebrated. And they had the opportunity to make lifetime careers out of this behavior. And that speaks to enablement and support and empowerment at all levels of government, federal, state, and local school districts, and even those who are supposed to hold them accountable. They by doing nothing, and by having parents have to learn the law, parents initiate the fight, parents initiate accountability, that speaks to enablement, support and empowerment from all of our higher levels of authority. For this type of behavior to be so pervasive, what's written is strong court interpretations are strong, research supporting it is strong. I feel this way too, when people say we need it to be fully funded, we need more money. And my first thought is, but look what you've done with the money you have. There is so much fraud, waste, and abuse across a special education system, across the money that's there, there needs to be accountability and what has already been given before we just give more. And so I think that what needs to happen is that people need to be personally accountable for violation of law. If an officer were to come up to us for breaking a law, we don't get to say I didn't know and be protected. So why is that? Okay? In the case of this civil rights law, this human rights law, why is that, okay? And why are so many people protected in it. So we've got to put teeth into it is what we need to do. And I think that having more oversight, and maybe even an eye, I think at some point, because the government so complicit in a lot of this at different levels, you've got to have a third party watchdog type organization that defends the children. Right? That because you've got all of these adults on either side and in between children are going without services for years, if they ever get them
isn't part of the problem. I'm not saying all of it, that we are decentralized in the way that we have held accountable accountability, because really, even in the US, and I'm learning about how things are done in other countries, I just talked to somebody in Australia, they don't even have as federal a system as we do. But even our federal system Isn't that powerful. Like my local school district, the majority of their funds come from their, the neighborhood, right and local taxes, they get a portion from state and an even smaller smidgen of percentages from the federal government. You're looking at Special Ed monies, but accountability, like this. I feel like there's a mindset, the higher you go up in, in in like, federal offices that inclusion is the right thing to do. We need to train principals on inclusive school leadership, we need to regulate the teacher training. And what's the word standardize? What educators are learning to get a more inclusive educator as you go in. But the power, it seems to me is really still in the local school district and that local school board. But it seems to me like the people that want to make the change, have the least amount of power. And that includes, like all the way up to the deputy and the of the offices of Special Education Programs. Because I guarantee you, if I had them on our show, they'd be all for inclusion. And I don't know this for sure. But even in the way that we're talking about it, that they're powerless to make any changes, because those decisions are made at the district level. And even the state doesn't have as much power. Anyway, I know this is a tangent, but I'm just curious.
It's interesting, because I would actually argue, argue the opposite. And I would say that, like in our area are most school boards making again, we've got people who can just run for office and get elected. They know nothing about special education. They make all of these decisions. And they ignore parent input. They're against politics, we have politics involved. And they always decide in favor of the government organization that the teachers coming forward. And the Pete the parents and teachers don't have as much of a voice. I will say in our specific case, right. The state was no help and a lot have families I see. So we have to elevate it. If you want to fix the problem, you got to shine a light on the darkness. And that means get it away from gesture, IEP table, go tell someone else make someone else come in and see it. And so sometimes the state will come in and help with the process. But they have all this team of compliance investigators who I've met them, I've been in meetings with them. And I can tell you, they don't know what they're enforcing compliance with. They're looking at a process, a linear process, but they're not looking at the intent behind the process. They don't know the laws that are governing it and they don't understand what they're accountable for. There have been times the Department of Education I found completely not helpful towards parents and not friendly towards parents. But in our specific case, they turned things around for us significantly by coming in is it handled how I would have liked it to be handled? No, because people were promoted versus punished for creating blanket policies in the state. I think because I hear that often, I think we can't do anything. And I think there's a difference between saying you can't do something and actually not being able to do something, I have found that the more I escalate and find someone who was actually in a position that does have significant authority to make change. There's a lot of work to make that change. And I have not seen a willingness to step inside of our schools. Because most people who believe in inclusion are in administrative positions, or they're really high up and they're doing paperwork, but they're not in the schools. They don't believe enough to put a program together to put into schools, they're not requiring accountability, even our reporting. For ide a, we report based on numbered statistics, it doesn't tell the whole story, it doesn't give enough information of what's happening. And you're not getting information from parents, you're only reporting on the system itself, and the numbers and statistics. And so to me, every time I've met with someone face to face, whether it's been a district superintendent, an area superintendent, I've heard the same thing that can't do anything, would you try? What did you tried to do? Because did you even make a phone call? Have you put a task? Have you put a committee together? Have you thought about anything? What is it within your realm to do something, there's a district in Virginia that took this on at a local level. And, and this is why I just mean about people, you can do something, I think it's a lazy excuse to say I don't have the power to do it. But there's a district and within that district, they put together Review Committee, and parents or school teams can come to this Special Education Review Committee for help when there's conflict, and I had the opportunity to be a part of this. And the committee talked to the school team separately, right. And then the parent, they talked to the parents and myself as their advocate. And that way, there's no he said, she said, and this entire committee just listens. They listen, they ask clarifying questions, they don't get into we don't do that, or that's not how it usually happens. They just listen, they ask questions to make sure they understand their next step, after talking to both sides, their responsibility is to create a report with recommendations. And they give that to their director of special education. So they come up with a correct corrective course of action. And in this particular case, it involved a lot of training for the team, the team was making a lot of procedural errors, and they were not supporting this child and general education. And it was clearly didn't know what to do. And so versus making, you guys just have to do it, they now have a team together that went into the school. Here's specifically what we need to tell you about what's going on. In this case, here's our recommendations for how you can move forward. Here's how we can support you and train you on what needs to happen. Here's the resources we have. And the next IEP meeting we had, the entire moon had shifted. It was collaborative, people were laughing. And people were ideas were going back and forth. There wasn't when there were differences of opinion, we were able to talk them out and understand both sides instead of locking in. And so much progress was made. And the parents actually after that meeting said I never imagined an IEP process could be like that never imagined it. And their child was in fourth grade. So they'd been doing it since preschool. And so in this case, this is again, it's a local district, but every district could implement something like that. Their purpose isn't to protect the district. It's how do we resolve conflict at the lowest level? And how do we catch some of these issues we have in a very, like proactive way come to us what's happening, how can we help and it was just a really incredible process. I felt everyone was very respected throughout the entire thing. And this, this child's school experience has completely turned around to be positive. And and I think about that anytime it's I don't have authority to do anything. One you don't need authority to make a difference. But to if you are in a position if you're in the educational system and your director, Senior Director, whatever, at any level, you have the ability to make an impact whether or not you have authentically chosen to use that ability to make an impact is a different story. But as many people told me, like, I couldn't like I remember the district came to me when I was fighting for feeding therapy. And what they told me was, you cannot change the system, you will never change the system. And in my book, I share that story where I look right back at him, and I said, Watch me. I had no idea what that meant. When I said it. I didn't know. I didn't even know that I didn't even know there was a law called ID EA, I knew nothing. But I knew I was going to change something for my kid and I was going to figure it out. So I go into things. When I hear people that have all of this experience and knowledge and connection, say they can't do something I have to I have to push back on that and say, I'm not sure you've really
the group that you were talking about that listen to you. Was that? Was that a local district group? Or was that a State group?
It was an organization that a specific school district put together to address their growing needs within special education.
And so it was a disk. So the district made the decision to do that, the district
came up with a solution. And when they tell you, when you engage, you have every right just because you engage in this does not mean you cannot move forward with a state complaint. It does not mean you cannot move forward with a federal complaint, you are process you can do all of those things that still engage us that we want to help. And and it's just it's an option, it doesn't like you could simultaneously take those other actions and still engage with them. Yeah, but that willingness to say we have a problem, and the state's not helping us. So what could we do that's different, what have we not tried, and it is very, it's very impactful.
So in the work that we've done with school districts, it feels like the people who have the most power to change things are school district leaders. For instance, like in Maryland, we work with Cecil County Public Schools for many years. And they're l LRE. A, I know, it's just a number, but they're LRE. A is over 90%. It's been over 90% for a decade. Not only that they have all the qualitative things to like you talk to anybody in the district, and they talk about belonging, and the mindset of inclusion. And so you know, that's happening. And there's other districts that are like that, right. But who is making that work is the superintendent, the assistant or associate superintendent, and it filters down through the principals and then through the educators in the schoolhouse level, and then the families, but even if in Maryland does have state representatives and state district leaders that have the mindset of inclusion, that's not the thing that drove the change. The thing that drove the change was at the district level. And it wasn't an educator going, I'm going to include my student, or a family that I'm going to include my students. So one of the things that I think about a lot is, who are the people we need to lean on to really make a change? And but yes, we can do all of these different things, right? Yes, we can advocate for individual students. Yes, we need to change how we are standardizing the teacher education programs, so that we get more inclusive educators out there. Yes, we need to change and look at state policy. And yes, we need to look at the federal policy and how we can increase accountability and all that stuff. But to me, and I think what you're saying boards is it is that the people that need to listen to this conversation, and to hear about the years and decades of research that inclusive education is beneficial for all learners, are really those superintendents and those associate is a curriculum and learning and it's not even the Directors of Special Ed.
Because we have such a hindrance is in general education, and they we never bring them into our inclusion conversations, right? Or like, here's all the special education research and all of this stuff. And general educators will sit in these IEP meetings and they almost never say anything. Right? They're there to answer Questions about academic curriculum? That's kind of it, they don't really participate other than that. And so I'm not. So I do think, definitely curriculum development, because we also have this new, relatively new idea of alternate curriculum, which isn't really alternate curriculum, right. It's not research based. Our district likes to refer to it with families, as watered down standards. And because who doesn't want a watered down education for their, but then also, you can't, those standards are just taught in a separate classroom. So now you're just segregated by curriculum, not your disability, but you have to have a disability to be on that curriculum. So it's, they're getting smarter about how they phrase it. But when you look at writing standards, in our state, there's this big back and forth of a general education teacher saying I can't modify that standard for a student, you can, if they have a disability, you absolutely can modify that. The state says I can't, you're grading this child in this class. And especially when we're given like 123, or fours, right? If you modify if a child cannot write, and they have a standard to write something, do you not see the ultimate bias that they don't have the physical capacity to write, or they have to retell something orally and they can't speak, you can modify the standard. So it is definitely in curriculum development is in those professional development programs too, because talk about trying to get teachers in a training programs, pre service programs. But we have so many teachers in our buildings who don't know what to do. And so it's not only making the changes here, but then showing up in that building, and reinforcing it face to face that this is what we're doing. But it also, back to your point about where does it start? I don't think there's necessarily a specific role to go after it's so important. It's a it's like a psychological selection, right? Who are the people here enough to do something. And because in our case, I mentioned I can go five, five minutes down the road and find a school that is doing nothing inclusive. But in our school, we have a principal who said, I've got it, let's do it, let's work together, we're going to figure it out, we're gonna make it work. They didn't get any extra training from the district. They don't have any resources, like my son's one on one with already on staff that she was reassigned. So sometimes, like principals, they, if they don't have headcount from the district to provide a one on one for a child, they struggle a little bit because we're supposed to write the IEP and resources aren't supposed to come into it. But I know I have no more headcount for my building. And at the district doesn't give me headcount, I literally don't have a body. And it's not supposed to influence things. And that's where the district and superintendent and staffing can come in and help. But instead, we're busy writing policies. That's, we have a county here in our state that just wrote one that the schools now have 10 days to issue a prior written notice to parents. What happens to parental participation in the development of the prior written notice? What do you do, like school board's working on that policy, and it's against law. And now you got to go fight it. So it's, it is, and there's people in these roles that you would think would be helping that are hurting? So it's about how do we find the people like we got to build the numbers and unite over the people who believe in inclusion, because the other side been united, they're in a whole system, and size a numbers game,
and the system exist? For it to continue the way that it is. It doesn't exist for it to change, there's no incentive.
Yeah, there's no benefit if you're more inclusive in your
heart, and
emotionally rewarding like Gary, right, but like, work, now, I'm working harder. I want conflict with my bosses now. Because this isn't what they support. My peers, who's a general education teacher doesn't like that I'm in their classroom. Like, I just it makes my life so much harder, because I don't have anyone else around me. Who supports it minus this family. It feels like a one feels like an individual battle that you take on whether you're a parent or an educator. And I think that's so heartbreaking because we all feel like individuals, and we're all fighting the same thing. And so like, how do we come together and put pressure from the outside in and from the inside out to the educators to join together inside this system, and us as parents putting the pressure coming from the outside to say it's not an option to not do this anymore? Failure cannot be your option anymore. We do not accept it as an option moving forward.
For parents who are families that are feeling stuck, they want inclusion, they want authentic, inclusive education for their child, but they just feel stuck. What advice do you have for them?
I mean, there's the same girl I'm sure we've all heard it, don't start a fight, you're not willing to finish. And I, with parents have liked to rephrase that as, don't take on a fight for something you don't believe in. Which means if you decide to move forward and you decide to fight, it's because you believe in it. And if you believe in it, that means you cannot stop fighting for it. And we all talk about what a fight it is. But we don't always talk about the emotions that go with it being overwhelmed that sense of shame that the school is put on us or even daring to ask that our students rights be met. The feelings of defeat, when we cannot get our child what they need, when we see our children hurting. Because there's trauma at school or they're not getting what they need in a school environment, that stuff starts to break you down. But then that's when you've got to go into fight mode. Because we are we're fighting for something incredibly important. And we're against a force that we can, they cannot be our enemy. But when we think about a fight, taking on something that's bigger than you are, the other side who is against inclusion has strength and numbers, and they've got history, and they've got infrastructure behind them. And so as parents, we can support each other, right and just having someone else in meetings and with us as a witness shining that light on the darkness as I've got someone else coming in for this meeting, I have someone else coming in for this discussion, backing each other up sitting beside each other standing beside each other, finding the educators who believe in what we do, and supporting them. And sometimes we have to do that a little more covertly. So they don't get in trouble when they're letting us know what's going on, and forming, forming those relationships and building our strength. Because when a fight sighs string, focus, skills, experience, strategy, all those things are really important. But so is hard, and resolve and values. And the US education system as a whole has significant size and strength, for sure, hands down, no one's to beat that. The death, it like on our side, we are fighting for something we are fighting for our kids physical and psychological safety, their emotional well being their right to belong in the communities, they live in the right to be valued and accepted as worth just the way they are. And so we're fighting for real opportunities for our children, who do have disabilities to be legitimately educated and authentically included. And, and underneath that all we're fighting for them to have good lives, and, and to be surrounded by both teachers and friends who they trust and have their best interests at heart, teach them life, things like competence and perseverance and to believe in themselves. And to extend that into all areas of their lives, including, but not limited to just academics, right, we're fighting for something so much bigger than how you perform on a test, or how you meet a state standard, that idea of being surrounded by people who have our best interest and help us with confidence, and perseverance and belonging and to believe in ourselves. At the end of the day, those are the same things that make life beautiful for all of us as human beings. I think it's understanding that when you're taking on this fight, and it gets hard, it's supposed to feel that way. It's supposed to feel hard, you're supposed to feel defeated, it's when you get back up. That's when you choose to fight getting knocked down, that's going to happen. But you've got to dig in and stand back up to fight because it's not just your kid you're fighting for a better life for it's the neighbor down the street. It's the person that's in a grocery store or kid that you don't know they have. It's someone you sit beside in church, it's a family you're playing soccer with, you don't know who it is, but we are fighting for something better. And it's hard. And you can't give up. But you have to stay focused on what you're fighting for, versus what you're fighting against. And I found that to be the biggest mind shift that I have had in my own journey with Gavin. And tying back to why I wrote this book and what I wanted to share with Gavin. That's really the crux of the feelings. And the story I wanted to tell is that we talk about the frustrations with inclusion. And we talk about the stories where children are just lost in a system and their needs aren't being met. But we have found success on the other side. And it was hard. And there were tears and there was anger and there was betrayal and all of these feelings but you have to understand that heartbreak, to appreciate how incredible the triumph is now to appreciate how incredible it is for him to sit in a fourth grade general education classroom and thrive in a system that wasn't designed for him to be there. And all because individual people along the way. Just started saying yes, we're going to make it work. We don't need Big systemic change to make the biggest difference like we can't wait for someone else to make change and we can't wait for someone else to hold people accountable. That's our fight in our role as parents to protect our children and give them the life that they deserve.
Mary Beth Moore thank you so much for being on the Think Inclusive Podcast we appreciate your time.
Thanks for having me. It was a blast.
Think Inclusive is written, edited, and sound designed by Tim Villegas, and is a production of MCIE.
Original music by Miles Kredich.
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