S11 E12 Heather Avis from The Lucky Few on Intentional Inclusion
12:58PM Dec 14, 2023
Speakers:
Tim Villegas
Keywords:
down syndrome
inclusion
people
kid
macy
intentional
school
inclusive
ableism
disability
students
community
inclusive education
child
story
work
special education teacher
class
space
family
The starting point is I want my kids to walk into a space and be seen as fully human. That's really it and, and to not have they're not have their humanity and their intrinsic value and worth questioned because they have a disability. That's what I want
Hi friends I'm Tim Vegas from the Maryland Coalition for Inclusive Education and you are listening to think inclusive, our podcast that brings you conversations about inclusive education, and what inclusion looks like in the real world. Heather Avis is a author, speaker, and advocate for individuals with Down syndrome. She is the founder of the lucky few, a foundation that aims to shift the narrative around Down Syndrome and create spaces of belonging for everyone. Heather shares her personal experience as a mother of three adopted children, two of whom have Down syndrome, and uses storytelling to challenge societal perceptions and promote inclusion. In this episode, Heather Avis emphasizes the importance of intentional inclusion, and the need for a shift in the narrative around disability. She shares personal experiences as a parent and highlights the power of storytelling to change perceptions and create spaces of belonging. Heather also addresses the challenges of advocating for inclusion and the ongoing work needed to dismantle ableism this week's episode is brought to you by Brooks publishing. Do you believe that all children with and without disabilities deserve to reach their potential through inclusive education? If so, you will love Brooks publishing, the premier publisher of books and tools on early childhood special education, communication, and language and more. Brooks publishing has been partnering with top experts for over 30 years to bring you the best resources for your classroom, clinic or home. To learn more, visit Brooks publishing.com. To browse their catalogue, read their blog and sign up for their newsletter, Brooks publishing, helping you make a difference in the lives of all children. And just for thinking cluesive listeners, visit bi T dot L y slash Brooks dash giveaway dash 1223 to put your name into win a copy of equitable and inclusive IEP is for students with complex support needs by Andrea Ropar and Jennifer Kurth. We will be taking names until the end of the month after a short break my interview with Heather avis.
For those of our listeners that don't know about the lucky few if you could just explain what that is and all of the things that you have available for families.
Definitely. i So i i live in Southern California with my family. I've a husband of 20, almost 21 years and then three kids. My oldest is 15. Her name is Macy and she has Down syndrome. My middle daughter is truly 12 years old. No disabilities and my son is nine and also has Down syndrome. All my kids came to me through adoption all born in Southern California. All came to me as infants. These are like high level questions people want to know right away. Okay. And prior to having a child with Down syndrome, I was also a special education teacher. I have a mild, moderate and moderate severe teaching credentials. And I taught resource at high school and then moved over to their living skills program as a teacher for the Living Skills Program at that same high school. Then when my oldest daughter Macy came home, I stopped working and I stayed home and, and entered into a whole different world as an advocate for the disability community. Being a parent to a disabled child versus loving my disabled students is it was a very different experience for me radically so. So Macy enters my world and when we were adopting her, we heard about her in passing because we absolutely said no to a child with a disability. She had a congenital heart defect she had all these issues she had pulmonary hypertension was on oxygen 24/7 I mean aside From Down syndrome, she was medically fragile. It's a very long story. But I, we ended up saying yes to her, bring her home. And I'm hold I have a moment holding her. I'm like, she's, she's an amazing baby. Like, what? What were we so terrified of? Why was this such a hard? Yes. And realizing that out all the outside voices, even as a special education teacher, and maybe especially so if I want to really pick it apart, we're saying, having a disabled child is bad. No one's saying Those were some people say those words out loud. But that's the messaging. This is bad. This is tragic. This is a sad story. And then we have this baby with Down Syndrome and, and our lived experience with her is quite the opposite. Absolutely, there's hard moments really, really hard moments. I think that just as parenting, but there are layers there having a child with Down syndrome, that make it harder than it should be. I don't usually use word should often, but I think it's appropriate here. And, and having to like, navigate that, yes, that's true. But then having any kind of kid can be hard. And most of the things that are hard about having a child with Down Syndrome have nothing to do with Down Syndrome and everything to do with the system that rejects them, and doesn't work for them. And so learning all of that. So that's bringing Macy into our lives. And then I had a moment one day at the park, it's so clear to me where Macy was taught she she didn't walk till she was three, she would scoot on her butt. And so she's like, kind of toddling around scooting around. So I'm thinking she was around two and a half years old or so. And I'm at the park. And there's all these moms with their kids. And I thought Macy is the only kid here with Down syndrome. There's not one other kid here down syndrome. And I felt so lucky that she was mine, like I get her, this kid gets to be my kid. Wow, I'm so lucky. And that really birth this idea of shifting a narrative around Down syndrome that is negative and scary and bad to one that's like, actually, I'm really lucky. And, and then interacting with so many people in the downstream community, people with Down syndrome, their siblings, their grandparents or parents who had a similar journey is similar experience where something that was negative than that, like this isn't I don't feel bad about this, oh, I actually feel lucky. And that we're kind of resonating with the Down Syndrome Community, not everybody, I have met people in the community that don't feel that way. And that's their own journey. But I would say 99% 98% of the people I've interacted with, have similar feeling. And so around the same time I started blogging, and then social media, Instagram came on the scene. And I started using the hashtag, the lucky few. So a few of us have a loved one with Down syndrome, those of us who are very lucky. And you know, the first few posts, it's just our family, our family. And then like little other people start popping in and always connected to Down syndrome. And it just took off within the community, really the community. I feel like grabbed on to that, like, Yes, this is how we feel, this is what it's like. And so then it grew into a book deal. And then I had offered opportunities just came my way I started speaking and started traveling and doing that whole circuit. I have four published books now. And then we had started a podcast called the lucky few podcast in 2018. And then we started a foundation that's really all about telling the bigger, fuller Down Syndrome story so that people can see themselves in the narrative, we're really the lucky few is all about shifting the Down Syndrome narrative. And creating a place in the world where everyone can belong. I believe that when if one person doesn't belong than actually nobody does, that belongs actually doesn't exist until everyone has it. And so telling a story that helps the society and systems and humans see the full humanity in a person with Down syndrome, and hopefully open up their world to that person and create space, the belonging for everybody. So those are the the areas that we are that's how the lucky few came to be. And that's what we do in a nutshell.
I love how you just you shared those specific vignettes of you know, being at the park and you know, being at home with macing. Right? Makes sense, right? Because I think storytelling is so important, and it's really what changes people's minds. I agree, you know, and moves narratives, change changes people's perceptions. And it's something that we say a lot in just our apt advocacy of inclusive education is I could give you a stack of research that says inclusive education is not only the right thing to do, but it benefits all learners but that's not going to change how you view inclusive, inclusive education. You experiencing it yourself in hearing stories of it changing people's lives like that. That is what changes systems. And, and so anyways, I just that resonated with me and I'm just so happy that you are in the world doing what you're doing. So
yeah, I think storytelling is the thing that connects the human, one human heart to another and gives you I think that the it's a piece of it. I mean, you have you can't know what you don't know. So it opens up, it's an invitation into understanding something you didn't understand before. That relationship piece, I think is catalyst for the real, real change to happen. But I think the story is that the invitation to a relationship in some regard. And that's why I think too, and in like such a, we're just immersed in social media, and there's such a comparison. And the amount of people I've met that are like, well, I don't have a good story to tell, or my story is not as good as or my story isn't as important as like, no, no, everybody has a story to tell, you have to tell it. Like saying to the teachers who for the first time had my kid with Down syndrome, the 30 years, I've never had a kid with Down syndrome. Like you have to tell your you have to tell the story. However you do it, you're going to tell a really good story because it's yours, and no one else can tell it. So here, write it down here, I'll share it, you know, like, let people just need a platform and a little like, nudge to know, like, you don't have to be a professional writer, storyteller. Your story is uniquely yours. And that makes it so important. No one can tell it. So do it. Tell it? Because it's right.
Yeah. Yeah. And if you're listening, and you have, I mean, like you said, I love that you said that everyone has a story to tell everyone has a story to tell. And so yeah, so you do have a story to tell, and whether you share that, you know, with your friends and neighbors and family members, or, you know, with with us and we will amplify that, just please, please just tell your story. So you've been pretty open about this idea of intentional inclusion, and I love for you to unpack that phrase for us. What does that mean to you? And like in practical terms, like how can you know families really live out this intentional inclusion?
I think I've been learning to I've talked about being intentional with inclusion, like you said, and I've even been growing in that area and and would challenge myself, I think the challenge I'm living now is what's the impact of that, like the impact of the decisions we're making, not just trying to be intentional, but understanding what the impact is, when we are intentional in this space. I think it's if you don't think through that, then you can get tripped up in the outcomes. But inclusion doesn't just happen in systemic settings. And even within like a family unit, it's not just going to happen, you have to be intentional in it. If you're I think, I think there's two pieces as a family. As a family with disability, we have to be really thoughtful, so intentional, being thoughtful about where we put our energy and our time and our resources and, and physically our children, we have to be thoughtful about that. It can't just be like, drop them off at a camp and then drive away, because then we're setting people up for failure. But I think even more so when I talk about intentional inclusion, it's for those who are who have the spaces in which people are excluded. So in an educational setting, inclusion doesn't work unless inclusive practices are in place, that essentially would be right inclusive in tensional. Inclusion, you have to think through the how how a space and a program and a system works or doesn't for somebody, and then intentionally or thoughtfully, adjust, make changes, try things out is basically how I would just define and describe intentional inclusion. I think then to think past that, like what's the impact of those decisions? What What could the outcome be of those decisions? That it's not? Because I think, if you just stop with intentionality, then you could risk like tokenism even where it's like, we're just checking a box. So in this Dei, this diversity, equity inclusion movement that's happening right now, I think that it's this is just my opinion, and people will disagree. I'm sure. It's time like I'm grateful for it. And if it's not done intentionally with the impact of those choices being thought through, then now we're just checking more boxes, and those for whom it's supposed to serve may end up being further discriminated against or their humanity even stripped further away. Because now there's just more boxes to check. So I find that in the disability in the Down Syndrome space, we try to be intentional with making sure we're telling a diverse story, specifically that we're not just telling the story adventure White families, you know, like that it's that we're telling the bigger whole story. But then I have to make sure in doing that, am I just checking the box like, well, we've got these different families Check, check, check and then moving on, or am I realizing like, what's the impact of this decision that I'm making? How is this going? Like, does it stop here? Do we keep going? Do we like, how are people going to process it? So that's, that's fun thinking through when I say intentional inclusion?
Yeah. That's so that's so real. Just the, checking the boxes of it, and it's hard because I coming from, you know, an educational system where everyone is so stretched thin, and just burnt out. It's, it's really easy to be like, okay, Did I did I check all the boxes, like, did I do all the things and, and I'm sure it's, it's the same for families, you know, everyone is just so tired, you
know, are tired.
We did a campaign, a back to school campaign last year in 2022. With Gap Kids, it was a really cool opportunity, I wrote a children's book called everyone belongs and through just different circumstances, we were introduced to some people at gap in 2019, and then have maintained relationships. So I pitched them a bicycle campaign called everyone belongs, and based off my children's book, and they did this beautiful campaign with the most disabled people they've ever had in the campaign. represented. And, and it was, it was interesting to watch, and to be a part of it, because they are their bottom line. At the end of the day, they need to sell a shirt, right, like they need to sell an item. And this is why dei is so interesting in the media, to me is it's like the the bottom line is money. And that's just how it is. And it's not about changing lives. Even if the people involved want that to be it, their bosses want to make money. And so I get that. And so there's a place, it's a can become a fine dance. But it was interesting to watch and be a part of it. Because seeing how they had to be intentional, like really intentional to do it well. And part of that was to bring me in to like help them process through and think through what does this mean to have a set where you've got people with limb differences and wheelchair users and people who are visually impaired and, and people who are deaf and with cochlear implants. And, you know, like so many different and people with Down syndrome, so many different disabilities on a set, and a lot of people without disabilities on the set. So they had to really be intentional in that and making it inclusive, they had to shift things away that they would normally do a project. And then I think through the like the idea of the impact of it. There was a short term impact. But I think because maybe GAAP stopped it being intentional. And I'm not trying to I'm not being paid by GAAP by any means or trying to throw them under the bus or whatever. It's I think this happens with all kinds of brands, and in classrooms and in families. But I don't know that they thought through the impact, because once that was done, it was done. And I haven't seen them be that diverse. Since in any other campaigns. You see what I mean? So they're so and I don't know that the people went home from that moment, the cast and the staff and the producers and the people who run GAAP and things shifted for them. I hope so. But it's kind of like if you stop it intentional. That was a RAD Campaign. And then it was a moment that did have impact on people. But did it impact the greater organization? Does that make sense? Absolutely. And I don't know that it did. I don't see that. I don't see it. Yeah, forward.
What comes? Yeah. What what comes to mind is this. What's been in the news lately, for me, in my feed is these pilot inclusion programs. So I don't know if you've heard of what's happening in Brooklyn, in New York City. But, like, literally two days, an article in New York Times and an article and Chalkbeat. We're highlighting these programs, these pilot inclusion programs for students with, you know, more extensive support needs, and which is great, like, wonderful. But I'll tell you whether I was part of a pilot inclusion program in my school district in 2009 10. And is my district any more inclusive because of that pilot inclusion program? No.
Oh my gosh. It's doesn't really. I'm not surprised that feels like a familiar story. It's like I meet from Pasadena I meet these parents whose children are 30. In their 30s, right, Mason's 15. They, they were at the game of inclusion way before Macy was fighting for it, trailblazing and 15 years later, I'm doing the same thing. Like, they worked so hard. What is missing? Tim? What is missing? I've got my theories. Well,
I'll tell you how they're well. So the short answer is we need we need a commitment from this from a district leadership from district leadership to to make changes. And in our organization, you know, which is the Maryland Coalition for inclusive education. I came on as Director of Communications in 2020. But we've been doing this work in Maryland since the early 90s. In the districts that we've worked with, they've sustained change over 20 years. So and it's you know, it's not just in Maryland, there's, there's pockets of districts all across the country, that have changed and have kept the change, you know, and by change, I mean, not only our learners with disabilities, and learners with more extensive support needs included for, you know, 90% or more of their day. But also, you know, you have special and general education, teachers collaborating, you have parents that are engaged in their community, you know, learners ride the same bus as everyone else, like all learners ride the same bus, there's no special ed or general ed bus, you know, all buses are accessible. You know, there's just a culture that needs to change. And so that I think that's the biggest thing, when I see pilot inclusion programs, I'm like, Yay, it's great. But what really sustains a change is a district committing to, you know, long term, long term changes that are gonna affect all learners. And it's not just about students disabilities, it's, you know, any students that have been historically marginalized. So you're talking about a lot of different identities there. Yep. Because it's all intersectional. So, so yeah, I think that is where, you know, that's where we need to focus is, you know, targeting school leaders, principals, associate superintendents, superintendents, people who are not steeped in the special ed lingo. Because typically, if you're in that, in that world, you have a very specific view of, of how learners with disabilities have to be educated. So we really need to get everyone else on board. There's more of them than there are of special education teachers. Like I remember I interviewed a principal in LA, you may be familiar with. A time. Yeah. Yeah. So Aaron, Studer I visited a few years ago, and I'll never forget this, like, we were sitting at his in his office, and you know, I've got my little recorder on there, you know, and, and we're just talking, and he's like, you know, if it's just a matter of getting all the special education personnel on board with inclusion will never win. Because there's, like, just by sheer numbers, there are more educators who aren't in that special education department, then there, then there are, right, so we really need to be focusing on everyone else. And I'm like, wow, that makes so much sense. You know?
Yeah, I mean, talk about intentional in collusion is chime. It's a school built with think like on inclusive practice. That is how it was built, building and about these charter schools. It my first thing is what is the foundation on which it's being built? What is the foundation because if you haven't ripped up that ablest thinking and haven't taken all that out, then you're just building on a foundation? That's not going to work? And then it Yeah, then it's going to be a cool little program. But how do we create a new foundation on which to build these inclusive? Yeah.
Yeah, and I love I love time, and I love all the charters that are committed to inclusion. I just, I just want you know, you talked about impact, right? The, you know, intentional inclusion, and then what's the impact? I just wish they had more impact on the The larger educational systems, because we just in my view, we don't need another pilot program. And we don't need another charter school that that proves inclusion works. It does like it. We've known it. So
anyway, all these things forever. Real quick, real quick, my kids, we have a school. Well, we can talk about my our schools in our district. And it's a whole thing, California. I mean, you are probably familiar, we are just really failing when it comes to inclusion. California has not, I think we're like the fourth from the bottom or something in some recent study that was done. Yeah. And we feel it as a family. I mean, we have felt it from the time my kid entered preschool, my oldest, but we have a charter school in our community that starts at seventh grade seventh through 12th grade. There's 250 Kids seventh through 12th grade. It's this tiny little school that the Montessori School feeds into. So it's a lottery system. And both of my my middle daughter truly will be in seventh and my daughter, Mason will be in ninth and they both got in it literally it's like winning the lottery. This is our third year trying to get in. And so it's like this exciting thing. And then also, hey, let's talk about this. And it's like, oh, yeah, Mason's, the second kid with Down syndrome in 30 years to go to the school. I'm like, why? I don't want to do this. Like, I don't want to be the one. I'm so tired. What is happening? You know, how is this possible?
Yeah, well, yeah, I know you. Yes. You won.
I won. I mean, it's like boy, and are all and then our alternative is a high school with 2500 students, 2500 students, which she would be in a Living Skills Program. And if we were to, quote, fight for her to be a full member of her school and included in her school, they I just know them too well, it's where I taught it would be for show, it would be for show it would be to check a box, it would be to make me happy because I've got my lawyer on my right hand side, you know, I mean, like, yeah, and then so then. So these are our choices. Like, what is happening here? Is this is my, this is our reality right now.
Yeah, yeah.
I'm sorry. And what made me think of that is what you said, totally connect it. I said to the head of schools at this charter, this is being done, because you just have this inclusion is being done well, in many, many places. There's no need no need to reinvent the wheel here. There's so many people you can learn from, and so many practices that you can instill, that are already happening, proven this works, you know, like that idea of, and he's like, that's great. Where is it? Like, okay, I'll help but I'm tired. This will exist? It
does. It does. It does. And I was thinking about this when you were talking about the Gap campaign. I think that in general, and maybe it's just because I'm more of like, the half glass full kind of person. But I do see it more and more like intentional inclusion, and a mindset of acceptance. Overall. Now, there's definitely pushback in all the different kinds of identities, right. But 10 years ago, 20 years ago, it wasn't like this. So I am hopeful. I'm, I am hopeful. But, but there's still we just have so much work to do. And we can't stop can't stop working. But yeah,
I agree with you. I am also very hopeful, and you can see the growth and the change. I you can just see it and know that and understand it. Um, I I get a little cynical, I think because I'm tired. Honestly, my daughter, my oldest is 15. And this time of life is hard for any 15 year old girl and the lack of relationship and space for her in the world is heartbreaking. It's devastating. And I'm exhausted. But I also feel that we're making a lot of progress. But there's little ways that we're missing it that I this is a whole other thing, too, that I think even in I will say this because I'm in the downswing space, like the Down Syndrome space, even is perpetuating ableism in their own ways. Because we haven't undone it in ourselves. I think that parents raising disabled kids who aren't disabled themselves, just because you have a disabled child doesn't mean you've undone ableism in your own life. And it doesn't mean and it's a it's a process and it takes a lot of work and a lot of effort and a lot of disabled voices in your ear. And I think we get into this we as parents advocating for our disabled kids, we get into this space of like, we know, we know, we know, we know what our kid needs, and we do to a certain extent, but their lived reality. And the way that systems are going to include them are not so different than ours. And I didn't, it took me about five years to even recognize my own ableism. Because I didn't think I could have that and have a disabled kid, but it's like, my middle daughter is black, just cuz I have a black child, as a white person doesn't make me not racist, like you have to do the hard work. And so I think we're moving really, maybe, as we're moving forward in creating more inclusive spaces, and having this world that's more inclusive. So many people fighting that fight, I don't think have done the hard work of undoing ableism in their own life. So then we perpetuate it by highlighting stories, like the prom stuff, you know, where it's like, look at this sweet kid with Down syndrome invited to prom by their unstable peer, and then you bring that up, and everyone's like, why are you so sensitive to this? This is such a kind thing. And there's all this, like, oh, there's a lot of work that needs to be done. As we move forward. And I don't know, I don't get the missing piece. I think there's a big piece missing. As we're pushing for inclusion. It's like, but we're doing it in a way that we haven't ripped up this foundation of ableism in our own lives. So we're building on top of it instead of taking doing
it. Oh, absolutely. And yeah, and I don't, you know, you talk about, like, I sense the just the being tired, because because, like, for instance, these, you know, examples that come across in my newsletters, and you know, in social media. At there's a, there's a part of me that goes like, I should address this, I should talk to people about this and why it's wrong. But I'm like, I just I'm so tired of writing and talking about it. Yeah. And, and then pointing it out. And then people saying, Why you being so sensitive, you know, or, you know, like, you know, can't you just let this be okay. Like, I'll give you an example. So this comes from my own district. And if you've listened to me long enough, you know exactly who what district that is. They they put out, they put out a like a blog article, you know, on their, on their website, about a student at a local elementary school, who was in a who is in a segregated self contained class for students with with autism at a school, and how wonderful it was that he, you know, would visit other general education classrooms? And isn't it so wonderful? He just lights everyone's, you know, he has such an infectious smile. And he's so sweet. And isn't it so nice that he gets to visit classrooms and spend time in general ed, and then he goes back to his, you know, class and he learns life skills. And and this was the shining example of inclusion, you know, and I'm just like
yeah. And in so I really hesitated. I mean, I did say something, but I, you know, there's just a part of me that's like, I just don't want to be that person, you know, and be like, to be like, What are you doing? You know, cuz that inside I am, I'm like, what, what are you doing? Like, this is not inclusion, I'm sorry. What you think you're doing is good. Like, it may feel good that you're doing something, but that's something like what you said, is just building on top of the ablest ideas that you already have. Yeah. And so like, how do you address that, especially in like your own community, right now with, with friends that are educators and in that school, and in that district? It's just like,
Ah, it's so much. I think that, oh, gosh, that relationship piece is so cute. I have a really good friend who runs a center for racial reconciliation. And he puts a lot of stuff into the world that that can make true things that make people feel uncomfortable, because it's true and hard to hear, right? And he'll get pushback from people about stuff. And his big thing is, he will always if you can invite them for coffee. So you're saying in your own community, like would you like to grab a coffee and then you can sit and have a conversation? That's kind of where I don't draw my line there but I am cautious if I can meet with someone at my school with the principal with the teacher with whoever the PTA, whoever wrote the thing, if you can sit down in person to have a conversation, yes, it's a lot of energy. But I think that's an opportunity for real relationship and growth and learning to happen versus writing a blog post or an Instagram. And then all the, like, people coming at you. That's heart, that is a different kind of energy that I don't know how productive it is. I don't know how productive I mean, yeah,
yeah. But yeah. And I would also like to acknowledge, because you did say about, like, your, you know, undoing your own ableism. Like, I make mistakes all the time, you know, and I actually just made actually just made a big one, which I'm not gonna, I'm not really going to get into, but I was not, I was made aware of my mistake. And it was very uncomfortable. But, you know, we talked about it. The people, you know, the individuals that brought it to my attention, and, you know, and I apologized, and I'm not sure if we're ever gonna get back to where we were. But I'm grateful for that. Because I need to grow, you know, and I'm, I'm gonna make more mistakes. So
it's a journey. Yeah, it's not a snap of the fingers. It's a journey, and it will absolutely involve mistakes. And so the new, my big thing is, when you make a mistake, you can either lean into it and grow or shy away from it and stay, and probably grow bitter and bitterness, I don't know. But that leaning into it, is so uncomfortable. And that's what growth is growth is uncomfortable, and that you can't grow without it. So it's really imperative to
Well, we've gone way off for our questions, but
do you have let's, I think we talked about the expectations of you know, going to this charter school. And just the, the energy it takes to advocate for your children, or for your students in regards to inclusion. But for you, when you think about like, an ideal educational experience for your kids, like, like, what do you imagine what do you picture? Yeah,
it's, it's really simple. The starting point is I want my kids to walk into a space and be seen as fully human. That's really it. And, and to not have they're not have their humanity and their intrinsic value and worth questioned because they have a disability. That's what I want. And I think if you start there, which I think is the starting point for any person who walks into space and doesn't wear their disability, on their body, on their face, that's the starting point. Then I think we can make huge progress. So that's my that's my goal. And I don't know that and not to be a pessimist. I'm, I'm not a pessimist. Okay, everybody. I'm not. I am a pragmatist. I am. Yes. And I do think that we are making a lot of progress. I think what my kids with Down syndrome, Mason and August, but they deserve in any setting that they step into is not in their lifetime. I just think that's the reality, I think there will be one offs, like there'll be pockets, but for them to go to their community dance class for them to walk into a classroom, at their community school for them to walk into a church for them to walk down the sidewalk, and be seen as fully human, and be seen as a person that's valuable and worthy to, to exist in their communities and be seen as someone that is that others want to embrace because of their differences, not in spite of them. I think that is 30 to 40 years in the future. And and I think it's worth working for I think that it's worth working towards. And so then I as a there's that advocate mind for me and you so this the beginning of our conversation like the choosing to put my kid in a self contained classroom, right, like that idea. I think I'm just gonna go there for a minute if that's okay with you. Absolutely. I as a, I think in the Down Syndrome space specifically, which is the space that I'm in the most, there is a huge push for inclusion and at least where I every community I was in from the time my child was a baby. It's like people in the downstream space are inclusive inclusion education inclusive education inclusive education you fight fight, fight, fight fight, this is the way it should be period full stop. And I don't disagree with those things. And and it's just not that it's not no one saying it's easy, but it's not that attainable for a lot of families. And even within the Down Syndrome space. There's this idea that there's a best way to have have Down syndrome. And that's usually being more like people without Down syndrome. So we're going to celebrate people with Down Syndrome who can go to college live alone, get their driver's license, hold the job, speak, clearly hang out in the playground win the awards, those people with Down syndrome, that person with Down syndrome gets to be in this in included, right. And they act because there's an ease to it, because they're more like people without Down syndrome in the in that way. So then it's not inclusion for people with Down syndrome, it's inclusion for people who can fit into the mold of people without Down syndrome, or people without disabilities. So that conversation is not being had, and then I've got a kid with Down syndrome, who isn't those things she's not, and she's incredible. So does she not deserve a space in the in the gen ed setting, or with her peers, and every, everywhere she goes, and she does, she deserves to be there as well. But it's gonna look so different for her. And so there's like that piece of the battle. But in my head, there was never, it's always been bad for my kid to be in a separate, segregated program. And what the problem with that that I found was, we got to a point, not just where her her dad and I are feeling pretty traumatized by our experience of having to continually convince people that she has value and worth how the weight of that and what that does to a parent needs to be acknowledged by by parents, and by those around us that this is a heavy, heavy thing to hold, to have to prove to someone that your child is valuable and how it's worth. It's so heavy and traumatizing. It really is. But aside from that my daughter is walking into a space with a sixth sense in which she can read a room. And she can tell just like the vibes in a room, and the way that I can't, the trauma that I'm putting her through by continually placing her in places where maybe the adults don't want her there. And there's a literal fight for her to not be there, where her peers don't know what to do with her. And the leader, the foundation, like underneath foundationally, and the leadership trickling down. Nobody is saying look at this child who is fully human as she is with Down syndrome. We're so happy she's here. And so if nobody's if that's not the overall idea around her being in a space, and I sent her there day after day, week, after week, school year after school year, what is that doing to her little heart, right, and that she doesn't have the verbal. The way that she communicates isn't in a way that I'm going to understand her completely. So there's she's got that going too, right? Like we're working through that. So I don't even know that I'm understanding how she's explaining that. So I can look at her behavior and different pieces to help me understand that. And so we got to a point in middle school where it was like, not only am I done fighting this fight and trying to prove now because we don't have one teacher, we now have six teachers. We don't have 30 kids, we now have what 630 I don't know a lot of kids that we're trying to prove. What, what is that doing to her little heart, right? Like when I'm getting these phone calls that Macy doesn't want to walk into her choir class. It's like, okay, everybody in the room. And everybody involved is looking at it like this is Mason's problem. And I'm thinking this is everyone's problem, but Mason's problem, and, and how to, is it even realistic to convince everybody involved that that, that that is the truth. And so what I'm gonna keep sending her there. So it was this decision of, excuse me, the safest place for Macy. That year, was either out of school completely, or, but we, my husband, I both work and there's a lot of logistics when it comes to homeschooling or not, you know, and I think it's a great option, if it's an option, I think it can be a great option. But the other option is this self contained living skills class where she will understand that she's being othered by being in that space, because she's communicated that to us in her ways. And at the same time, she's in a room of with people who she doesn't have to constantly prove that she is allowed to be there. That's where she's allowed to be. And we just can't underestimate that. I think for our kids there. It's a both and we need to fight for it. And we need to protect their hearts and their minds. And and I think that that's, that's my biggest job as a parent. No, it's my my job is to parent my children and do what's best for them far more than it is to advocate for a change in a system. Hopefully, both can be happening simultaneously. But my priority is my kids and their heart and so that's I felt really pushed into a corner and then literally pushed into a corner and she just needed a break right like we all needed a break. And then there. Once we did that, I can look back and realize, like, what we gave up, what we were forced to give up, in order for that to happen is it's just horrible. And we didn't ever get it back in terms of like logistics on her IEP, you know, we never got it back, because the district pulled one over on us. And then it was a whole thing. So
yeah, yeah. So it's like, once you agree to certain things, you know, then it's like, well, you agreed to it. So, right. You know, why would you, like there's no data to prove that the student can, you know, learn or grow, make progress in this other setting? You know, so I, I think this is such an important conversation, because it's not just I mean, I know you're talking specifically about about your child and in the conversations in the, in the Down Syndrome Community, but you know, it's the same conversation in, you know, for learners on the autism spectrum. Sure, you know, and also for, you know, learners who have behavior challenges. You know, I came from a district that had three separate programs, autism, intellectual disability, and behavior disorder is what they were called EBD, or something emotional behavior disorder, three separate classes. So at any one point, you could go to a, well, it didn't happen at every school. But potentially, you could go to a school, and there could be an autism room, an intellectual disabilities classroom, and an EBD classroom. Yeah. And all of these students were separated, and they that wasn't their homeschool. That was their, you know, they were bused from other parts, you know, and it was, you know, their regional programs. But you're still talking about, like, that's not their community.
Right. And if the program isn't in place, yes, we're going to, there's such a push for inclusion, and rightfully so. But if what your child needs doesn't exist, then I just have compassion for the moms and dads and caregivers who are like that, I have to put my kid on a bus and bus them to this separate classroom that segregated because the alternative is Fight, fight, fight, fight, fight. In so many districts, and you're not fighting, even specifically for your child to be included, you're fighting for them to be seen as fully human, it's a different way to look at the conversation. It's a different fight. You know, it's a different fight. And it's and I don't think we're talking enough about how that takes a toll on parents and caregivers and their children. And that all of it, all of the blame is on our kid with a disability. And it's like, well, your inclusion, your kid can be included once they are once they can, once they do. It's like well, no, that's not inclusion, that's making them be somebody else. Right? Like you don't earn inclusion. That's not how we saw inclusion is you know this, but that's how so many programs are set up. Like if your kid can do this, then they then they've earned a spot in the classroom, like well, that. I don't I don't know how we can keep having this conversation without looking at what damage that's doing to like the psyche of our disabled kids and students and parents and caregivers. Yeah. That's the ticket press around. I'm done. I'm done with school. This is what happens when I started going on. We're done. We're leaving. We're moving to an island. Y'all are missing out on my kids. So that's your loss. Your loss. But honestly, like we're taking our kids out of the public school out of our public schools and putting him in this charter, and it could be a hot mess. And pardon me, what I would love like you said, What do you want? What does it look like for me? What what it looks like? Is the school district saying, No, don't take me see from us. We need her we need Mason exactly as she is she's such a gift to our community. Please don't take her. Please let us have her. That's what we need because she is and it's hard. And she doesn't do school like everyone else to school but at the end of the day, she is a gift. She is an invitation to seeing the world in a whole different way to seeing our her intrinsic value and worth and the seat and then it reflects back on you. Right it's she's a gift and invitation to say people with disabilities are intrinsically valuable and worthy. Well, maybe I am two so as this kid, it changes your whole world. She has a gift and an invitation. And I that's what I wanted to be seen as
the Stay tuned for the mystery question right after this break.
So this is a, this shouldn't be controversial. So what was the most memorable class you've ever taken in school or college? Oh,
okay, I need to think about this because this is recall.
Yeah. So let me think, memorable class memorable. One comes to mind, but it's, it's more of like my it's kind of like my origin story. You know? So I guess I'll go with that because that's the, that's always the one that comes. So I went to Azusa Pacific University. And I, I majored in psychology. And the last class that I took my senior year was called the psychology of the exceptional child. And I thought I was gonna learn about gifted kids. And so, I a little bit about me is I went to private school, like my entire career. So preschool through kindergarten, and I like to say college too, because AP US, you know, private school anyways. And so, one of the, one of the assignments that I had was to visit a special education classroom like a local in Azusa Aziz Azusa unified. And so I, I went and visited a classroom. And I was expound on what I was expecting, but I did not, like, I did not expect to see what I saw, which was, it was just a small group of kids. In a math class, it was like a middle school, sixth grade, seventh grade algebra. And I don't know if I don't think they do algebra. But it was just math. And there was a teacher, and he had a Hawaiian shirt on. And he just, it was just like, chill. It was like, super chill. You know, they were doing some assignments. And I'm like, What is special about this? Like, that's just it's smaller, you know, but I don't, I don't get it. I don't get what this special education thing is. Because number one, I had no context for it. And number two, I was just like, I just don't know what is so different about this. And so when I left, it was more like, I'm just going to file that away. And you know, I finished my class, and I learned about assessment, and I learned about, you know, the law and all this stuff. But I had no intention of being a special education teacher. I graduated with a degree in psychology. And I was like, Well, I guess I'm going to, you know, graduate school. But I, my first job out of school was a behavior therapist, because I was like, that sounds interesting, you know, for for young children with autism. And so that was, that was it? That was my, you know, so that actually was like my first it was my entry point.
Nice. That's good. That's a good story. Um, I This isn't my answer, but I T aid, my high school senior year elective was to ta at a in a special education classroom. Really, I went off campus every day. And that was a big one for me. It could be mine. That was impactful. This was memorable wasn't a question, what was your most memorable class number? Yes, there's a hard left. I was I went to Sonoma State University in Northern California. And I was a it's a very liberal school. I was a Liberal Studies major and a program called Hutchins, which there's very few Hutchins programs that existed around the nation. And it's an interdisciplinary program where your classes were like 10 people, and a professor and you just read a ton of books and read it and papers and had tons of discussions about things. Like the meat of it. It was such a great program, I loved it. And then there was a science, the science classes. And my most memorable class was called Life on Mars was the science class. And it was this professor who was straight from a movie character, like, like crazy hair, and all and or like wild hair. And he taught an entire semester on life on Mars. And if it could happen or not, and that was my science class. And I just remember being in that class, like, how am I paying for this? And how is this a real course every time once a week? I thought, How is this real? So it's very memorable. Zimmerman. That was his name.
That's amazing.
Life on Mars.
Oh, my goodness. Yeah. Oh, wow. Heather, AVIs, thank you so much for having an amazing conversation with me. The inclusive podcast.
Thank you for having me.
We ran out of time for free time this week, but stay tuned for next week if you like that segment.
For more information about inclusive education or to learn how you can partner with MCIE on school transformation or professional learning opportunities, visit MCIE.org. Thanks again to Brooks publishing for sponsoring this episode of thinking inclusive. Love, think inclusive. Here are a few ways to let us know. Rate us on Spotify, or leave us a review on Apple podcasts. Become a patron like these fine people and get extra stuff. thank you to Aaron P. Jared T joiner, a, Kathy B, Mark C, Gabi M. And Kathleen T. We appreciate your continued support. Think inclusive, thinking cluesive is written, edited, designed, mixed and mastered by me to Vegas, Original Music by miles credit, additional music from melody. Thanks for your time and attention and remember, inclusion always works.
I live it I live in a community or an area called the Inland Empire which is about an hour east of Pasadena. And then in 2000, something almost 10 years ago, eight years ago, we moved to the Pasadena area. So when I moved there I had a eight month old baby with Down Syndrome and a five year old daughter with Down syndrome. And then yeah, club 21 is just an incredible organization. So we started attending, I already was blogging. I didn't have my first book wasn't out yet. But I was blogging. I was on social media and was in the Down Syndrome space as an advocate and ally and then connected with club 21 as a resource for me personally with my family.
Oh, that's wonderful. Yeah, yeah. Nancy little kid. So joy. Domingo is a really good friend of ours. We used to go to foothills Community Church. My wife and I when we lived we lived in Pasadena.
Oh, okay. This is okay. So you when did you live out here?
So I Well, I grew up in Southern California. So oh my gosh, we moved in 2008.
