Unite and Conquer: Inclusion Warriors Karen Ford Cull and Iris Barker

Event transcript: Welcome to Undivided Live: Unite and Conquer. Brings together parents and allies in the disability community to discuss issues that they and many others are facing... many other families are facing, and one of the most talked about, stressful, frustrating, and hopeful things that parents ask and talk about is inclusion, which is why we're launching our series today, Inclusion Warriors. I'm Lindsay Crain, and I head the Content and Community teams at Undivided. If you tuned into... tuned in with us before, you'll notice that I am without my wingman, co-host and CEO of Undivided, Jason Lehmbeck. He'll be back in a few weeks as he is hard at work ensuring Undivided is doing everything we can to support families like yours who are raising children with disabilities. Nevertheless, I'm in amazing company today. I am joined by two powerful inclusion warrior moms, Karen Cull and Iris Barker. They're working tirelessly and collaboratively for progressive change in their public school districts. And let me just say their reaction to being called inclusion... I'm going to put you guys on the spot. Their reaction to being called inclusion warriors was, “I don't think I deserve that title. I don't feel like I've done enough to earn that.” So, let me be clear. This series is for any parent or ally who is advocating for educational equity, thinking about it, or just wants to know more about inclusion. We're collectively working to ensure our children are seen, educated, respected, included, and valued for everything they are and everything they can be. So, being a warrior does not mean that you've won or that your child is exactly where you want them to be, or that you’ve changed the whole system or the world. Maybe that inclusion needle has barely moved for your child, but you're a warrior if you're fighting for your child's present and their future. So, whether it's quietly or it's on the nightly news, you’re a warrior when you know the problem isn't with your child, it's with a broken system and culture, and you refuse to accept that. Let's meet today's warriors. We have Karen, who is mom to three sons. Her middle child, Magnus, is 17 years old and has Down syndrome. She co-founded the South Bay community group of Club 21 Learning and Resource Center. She's a board member of Cal-TASH and is currently at the CA-LEND program at USC as a family support trainee. She’s a real underachiever. She's worked with countless families, including Iris, and lucky for us, she is a content specialist and writer right here at Undivided. Welcome, Karen. Thank you. Welcome. And we also have Iris with us today. She is a proud mom of three kiddos. Her eight year old daughter, Kayla, also has Down syndrome. She has undergone dozens of trainings with Club 21, Wrightslaw, Cal-TASH and more. After advocating for friends and families for years, she made it official and is an independent facilitator for the Self-Determination Program and parent Navigator here at Undivided, so you can see why I love coming to work. I am so lucky to call these ladies colleagues and friends. Hello, Iris. Yeah. Hi. Hi. And we also have Meghan and Lexi from our Content team in the chat with you today. They'll be sharing links to our original articles that can help you learn more about what we're talking today, so you can really dive deeper. They'll also be passing along your questions to me, and we'll get to as many as we can. Hello, Meghan and Lexi. Throw us an emoji in the chat window if you haven't already. And before we jump into the details, inclusion can mean different things to different people, so Iris, why don't you start out. I would love for you to tell us what inclusion means to you and why is it so important? Yeah. I mean, for us as a family, being included is just being accepted, being respected, being felt like you're valued, like you belong, and basically, I’m quoting here, Club 21, but having a seat at the table, being part of everything, right? Your school, your community, everything. Absolutely. Karen, what about you? Yeah. But similar... I mean for me, really, to start off with it was... it was all about just having as normal a life as possible, right? Everything just being... Magnus having the same access to the same things that anybody else has, right? And for me, early on, that meant having as much time as possible with typically developing kids and just focusing on that, whether it was in school or outside of school, right? And then as he's grown up, I've come to realize that really, what inclusion is, It's not about a place or a person, but it's about figuring out what he needs in terms of support in order to be successful in whatever he wants to do and whoever it's with. And you kind of have to do inclusion in any of the spaces. Even when you go to not inclusive spaces like Special Olympics, right? You still have to figure out how to include him, so it's a process wherever you are. Right. Because what really is inclusion, right? It's a part of the world, right, which our kids are. A common thing that we hear from parents: They want inclusion. They believe their kid belongs in a class with their peers. They research best practices and they... It's like, “Sign me up,” right? This is great, of course, but the understandable reality is they don't want their child to be a guinea pig. I mean, most public schools, as probably everyone listening here knows, they're not used to including all kids with IEPs, especially kids with intellectual disabilities, behavioral challenges or extensive support needs, so parents are worried about safety. They want their kids to meaningfully learn. They don't want them sitting in a classroom without support, completely lost. So, maybe these thoughts went through your head as well, so I'd love to know why was it worth it for you to try. Iris, you want to start? I mean, for us, it was worth it because again, right, and you hear this from many people, but there's not a special gas station or a disability individual's grocery store or that kind of stuff. There's nothing special, and I feel like also we... One, these people, these individuals, to function, right, to function properly in the way they’re supposed to, whatever that means, right, in the society, but we're trying to segregate them from when they are little. That makes no sense. So, for us, it was just very important to have her be part of what she's part of, right? Society, the community, from everything. And you were willing to push past... and I know we'll get into all of the big challenges and the barriers, but it was worth it for you to say, “All right, this isn't going to be easy, but we're going to try this.” Absolutely, absolutely. There's no perfect... I mean, when it comes specifically to the school, there's no perfect inclusion, right? There's no perfect school that will do inclusion. We were the guinea pig before. We continue to be the guinea pig in our new school distrcit, but I mean, that's... we don't see any other way of doing things but this way. Right. Karen, what about you? Why was it worth it? Yeah, it's definitely worth it. I mean, right from the beginning when he moved from SDC in preschool, and he was actually in an SDC kindergarten for one year and then moved to a regular kindergarten next door, right, for the next year, and the biggest barrier at that time was that he couldn't talk, but he started talking right then because he had 25 little speech therapists with him all the time, right? The little kids in kindergarten, they were the best. That's what he needed, really, to learn to talk. They were the best resource for him. And just going forward, the friendships that he had in elementary school were amazing, and then when you get into high school, it gets harder. Middle school and high school, the friendships do kind of dry up a bit, and it's hard. You have to really work at those things. It becomes a bit more formal, but still I see him, just the beam on his face when he got to be part of the school show. He was handing out programs, but he still felt like he was part of it, and just really, I can see how much that makes a difference to him to feel involved, but there have been times when he struggled and when there hasn't been enough support, but I still see him thriving, and I questioned myself and said, “Oh, maybe we're putting too much on him, by always pushing inclusion,” but when I... Whenever I've had that doubt, I've seen him actually thrive, and so it's definitely been worth it, yeah. And I obviously love so many things about what you both said and the socialization, I know we did have a lot of questions, and we're going to dive into that a little bit. I'm glad you mentioned that because it's a huge question. And then Iris, something you said about you stop looking for the inclusive school, and so many parents, right, it's a huge thing we all hear about. Where can I go? Who supports us? Where am I... where should I go? And a lot of people can name sort of the two elementary schools that might go a little older that are charter schools, that there's a very long waiting list that do this the right way, but for the majority of us, we're left with how can we create this? How can I send my kid to the neighborhood school where they... where ideally we'd like them to go, and how do I create this? And it might not be pretty, and like you said, it's not going to be perfect, but let's start this because that search is going to lead you to probably where you expect. You're not going to find it, right? I mean, with very rare exceptions. And just to set up some logistical questions so everyone can understand really how your kids are experiencing inclusion, because again, that can mean a lot of things to a lot of different people, and then we can dig deeper into some of these in just a bit, but is your child... I just want you each to answer this so parents can understand how your child is really spending their days. So, is your child in gen ed all day? And Karen, maybe you can start with this one, and I assume that might have vacillated throughout the years. Yeah, I mean high school looks very different, right? But in elementary school, the only time we actually had 100% inclusion was that first year of kindergarten, and after that we... He normally... Most of the years he was in the resource room, the learning center, for about half the learning time of the day, but it... because he was with the other kids the rest of the time, but, I mean, I think maybe we had too much pull-out in elementary school. Finding that balance is difficult. In middle school, he was actually most of the time in gen ed, and only pulled out for speech, and he was in a few special classes, but as far as he was concerned, it was gen ed, right? Because it wasn't... it was just a support class. They call it ‘Fundations.’ And then in high school right now, he's actually... It's 63% on his IEP, but actually what it... because you have six classes, so he's in Essential Skills, which is an SDC class for math, and then he's in a Foundations level, which is basic support for kids who can still stay on the curriculum for English, and then he's in gen ed for the other classes, and one of those classes is a co-taught class, so they have these different levels and different categories of classes and he's in every kind. He's in one of each, right? But he is... 60% of his day, he is with gen ed kids, and then after school, right now he's in a theater program as well with gen ed kids, so he has a long day, and most of the time he's with the other kids. He's a part of the school just like any other student, right? That's awesome. And, Iris, what about you? Yeah, for us, it has changed throughout the years as well. I mean, something that we had talked about in the past with other people, including Karen, is about how this is a journey. Inclusion, we see it as a journey not only for us, because we're learning as we go, but also for the school district, right, in this case, that they are not used to, most of them, inclusion and one of the things that I'm reflecting back on is when we first started, we had a level of inclusion. It was like 80/20, but we had so many pull-outs that you would have thought that it was more like 50/50 or something like that, and when I caught on to that, I realized we were having all kind of behaviors and it was just a mess, so then from there on, we move on to maybe now what we have, which is more like a 70/30, but she is most of the day included, but she does get pulled out one hour of the day, 30 minute slots only, for math to the resource center and then reading to the resource center, and then she has push-in OT one of the days, and then another day she has pull-out speech and pull-out PT. Part of it is consult and the other one pull-out. But again, even though we would say it's a little bit less inclusion, but it's more structured to the way that she's now being pulled out. Here 15 minutes, 15 minutes there, and 10 and... All over the place. So, that's important. Let me ask you a follow up to that. When you said she's being pulled out for 30 minutes for English, 30 minutes for math, is she still a part of those core classes with the rest of the class, and that is... Whether it's for mediation or that's really working on the skills for those classes, is she still part of those core subjects? She is. That was absolutely... That's something important to point out that, yeah, it was very important for us to still allow her to see how things are being done, right, in the gen ed setting because we can’t expect them to be able to do it in the way that they are doing it when they are pulling her out at that specific time, which they did previously when we were 80/20, so again, it's just all of us learning and figuring out what's best and most appropriate. Absolutely. And, Isabel, I lost the comment, but I saw Isabel saying something in the chat as well that she really struggles with how much is pull-out, how much is too much, and it's really a balance, and it sounds like you're sharing the same thing. It's always kind of... and it doesn't... Starting one way doesn't mean it has to stay, right? Have the child lead you. I would assume like you did, Iris, your daughter was not happy with obviously all the pull-outs. It wasn't good for her, but I know that it's a really difficult balance. Second, do they have push-in or pull-out services? Karen? Yeah. So, he has only got speech now as a service, so he has one session whether he's pulled out, but it's first thing in the morning, so he goes there first and then the other speech session, she pushes in to the theater class where there's lots of talking going on and OT’s on a consult, so he doesn't get really pulled for much, but it is hard to get those therapists who... You're asking them to do a one-on-one thing with them and then getting them to push-in. They haven't been trained necessarily for that, so it's hard for them, and they want to bring them to their nice room where they've got all the gadgets and so on, so that has been a struggle getting them, and then I think the other thing with pull-out is just getting them to look at the schedule, because especially in elementary school, you don't want your kid to get pulled when the teacher’s about to read the story, right? Or if... Magnus was always pulled out for math in elementary school, so he didn't get any exposure to things like multiplication and so on, and that was a big mistake, because then when we got to middle school, they were like, “Well, you can't do multiplication. It's not a six grade standard. It's not a seventh grade standard,” right? And so he hadn't had that exposure with the rest of the class, so making sure they're not always pulled for all amount of time, but they're in the classroom for some of the math time, so that even if they're not ready to do multiplication, they're still exposed to what it is. Iris, what about you? Yeah, the OT, like I said, is what they are pushing in and speech, part of it is consult. Then the other part is pull-out, and PT also, I think, some of it is being pushed in. Honestly, I can't remember right now, but yeah, in the resource center, she gets pulled out. And one thing you said, Karen, too about schedule is one of the hugest barriers that we faced in elementary school was that there was no master schedule, and so I could not get with therapists... It's like we have... and it's true. They have a huge caseload of kids that they needed to pull out, and sometimes it was at the same time and sometimes they had to be opportunistic, because they weren't given any kind of a master schedule to figure out, and so frequently it was like, okay, do we want Lena pulled out for APE, and then she's missing English? So, it's just like questions to ask during your IEP, like when... and not guaranteed that they can write that in, but it's really something to talk about. I don't want her pulled out during these core subjects, and to really talk about if there are pull-outs, what that looks like and when that happens in their day. It gets hard. It is, it is, and I completely respect that it's... can be really impossible for therapists, and it's really... it's a bigger question on how to look at that master schedule. Okay. Third, does your school have an inclusion specialist, Karen? I wish they did. I've been telling them for a long time that's what they need. Iris? Yeah, no. Every school that we’ve been, our district, when we ask about inclusion, especially says, “The resource center teacher will do it. Don't worry, they are the ones doing it.” So I'm like, “Okay, so....” And the reason I ask, because yeah, we talk about this and this is this wonderful concept that most schools do not have, and so how do you either advocate for that, but realistically, how do you work with what you have and how do we create that, which we’ll get into. And then lastly, did you push for any teacher training or professional development for your child's IEP team, Karen? Oh yeah. Well, in... Both of us, I mean, like a Club 21 program that incorporates a teacher training part to it, and so both of us have offered our schools to have... to be part of that program, and I've been in that since Magnus was in kindergarten, and I have had some... The resource teacher once went to it and the aide has gone to it, so I have had teachers who have taken part, but not usually the general ed teacher, which is really what it's aimed for, but I’ve also suggested other kinds of training to the district and to the school, but you have to be a bit careful because you suggesting that they need training can come across off, right? And so you have to be very diplomatic and... but there is a lot of training that... and it isn't our responsibility to pay for it or find it or whatever, but the more that they can have, the better they're going to... because in the... most of the teachers, they don't really have that training from when they were in college, right? And there's so much good information out there and so many great training programs for them to do. Well, and before, Iris, I ask you, I... It’s really... It's difficult, the training, like you said, you have to be really sensitive. I've also forwarded things, but another source for any of our parents in California is to check with your SELPA, because I've really... they're... they offer this huge group of trainings and then the SELPA directors sort of negotiate what's getting what and I've been able to get inclusion trainings for our SELPA as well by speaking up and just continuously year after year advocating for that, so it is another resource to ask for as well. Iris, what about you? Yeah, I've had a couple of success stories myself too. The training from Club 21, one of the aides attended it and it was huge for her. She said it made a huge difference in her life, and just seeing the parent perspective, because a lot of the times they don't see that part, so being able to see that for her was a big breakthrough, and now I'm having the resource center teacher at our school go in and I feel like that's a win, because, I mean, in this case the gen ed teacher... Yeah, of course it would have been amazing if she would have attended, but she might not be the teacher for the next child with Down syndrome, but most likely the resource center teacher will regardless, so I kind of see that as some sort of success, but when I do bring it up to the school district as to, hey, what about training for the aide for this, it's always the run around. “Oh yeah, we're providing training. Don't worry. We got it.” Yeah, it is very difficult, but squeaky wheel, you just keep on going. I think we're all a little bit squeaky here, so yeah. Allison, I see, also said... Looks like you, Iris. She had... She said she figured out great timing with her son's resources. Resource teacher pulls him out to prime him and preview key ELA stories and texts. Then he goes to gen ed to do those texts with peers with more confidence and even verbally participates. That's awesome, Allison, and a great idea for everybody. And Isabelle also said, “Amellia has a BCBA who oversees the whole team. Isn't that similar to an inclusion specialist?” It depends on what the function of the BCBA is, Isabelle. That could just be the behavior plan, or they could be talking about the best ways to include your daughter if there are behavioral issues that then the... or challenges that the whole team can address and understand how to do. So really, all of your team should be working on different ways to make that successful, whether that's an OT making sure that they have accommodations, which we'll touch on accommodations as well in a little bit, but all of your team should be working on how to make your child successful in their classroom, whatever setting that is. Let's see. Oh yeah. Oh, somebody also just threw in something about Ali Steers. Sheri said, “I don't know if Ali Steers still runs a support training, but if she does, that's something to check into, maybe for speech or for AAC.” Also, there's lots of parents listening who surely have no idea where or how to start asking for inclusion, or maybe they have and they were shot down immediately. I'm sure if that wasn't you, you know somebody and can relate to that. So, I would love for the two of you to share one or two essential components that you included in your child's IEP when you first started, or things that you wish you would have included in hindsight. Iris, do you want to start us out? Yeah, I think for us, we started in preschool, so for us at the time when they gave us the push back, it's like, come on, they're learning shapes and colors and the ABC, so she can't do it in the typical setting, so for us it was just understanding where children are at the time and that this could be done in an inclusive setting, and also just making sure that we tailor our goals to a gen ed setting. That was just very, very important. So, those were the two things, I think. And then we'll get into goals after we talk to this, because we had a lot of questions about that as well. So, that was making sure that your goals... and what was your first one, Iris, about...? -- Understanding that our kids are capable of learning many things in the gen ed. When they tell you, “Oh, they need to be over here because it's a smaller classroom size, so...” No, especially in preschool. I mean, come on. The things that they are learning, it doesn't take a special education teacher to teach that. -- Right. Believing in your child and knowing that they... that with the supports that they can thrive in that environment. Definitely. Karen, what about you? Yeah, I think having somebody responsible for doing that inclusion work, I think, is key. Having some... Getting to write in some kind of collaboration between the team, right? Particularly support for the gen ed teacher, because they are really... They... You often get the pushback from the gen ed teacher just because they feel like they don't really have enough support, and if you can write in that support for them, then they're going to feel more positive about it. I think that just getting the IEP team and the whole school to kind of see it as a long term vision. This is the plan for our kid, right? So that vision statement, they've done some great work in Undivided on that, and just helping the whole IEP team to see it as their mission to kind of include this kid, right? Getting them on mission, that’s the key, I think, and I struggled with that for a long time. I love that, Karen. And yeah, you... If you haven't seen our vision statement template, we developed that with Dr. Caitlin Solone. It's really important to remind everyone what you're looking at, right? This is our child. This is what we're hoping for our child's future, like every parent, and this is what... So, everything we're doing is working up to that, so let's make sure that we are continuing to build on everything we do. It's so important. And I did want to ask too, what about... because I know both of your kids started from the beginning, but what if a parent is just starting to really, really push for that advocacy or they've been sick of what they've seen, whether that's third grade or sixth grade, they're not starting from preschool. Let's even take a sixth grader. Does that change your answer at all for things that they really need to take and make sure that they're putting in their IEP? I know parents who have moved their child into inclusion in middle school or in high school, and that is a big change for the kid, so you definitely need somebody there to help the child with that big change, right? Because the expectations on them is going to be different, and just working with them to understand that the expectations are different, and just give that support, but that is going to be an inclusion specialist or it's going to be a BCBA, depending on what the kid needs, but I think one thing I would say to that parent is that is not going to be easy. It might... It probably will be very good in the long run, but you're going to have a few months at least where the kid is really in a very new environment, right? And we all know what that feels, so that is going to require a lot of support, but it might be exactly what they need. I will say on a personal note, we... My daughter had only... really pushing all through elementary, it was still only science and social studies and specials, and... which art, music, things like that, which wasn't always the case even in the beginning. That's where we got, right? But for sixth grade, after being off for whatever... I've lost track of time. A year and a half, whatever it was for Covid, I was terrified and I was so scared, and she's in all gen ed classes except for one, and I... I didn't know if everything would fall apart, and she is thriving more than she ever has. She is really coming alive, and not that it's easy. She has long days, but she has support. She has a supportive case carrier. We're in constant communication for the first time in her educational career. I mean, I have... Really, constantly talking to gen ed teachers, they are... And for some of them, it's the first child with more significant support needs that they have supported, and... but they are... they're on board and they're trying it and I can see it in her excitement to go to school, and so I guess the clarification that I'd love to hear from both of you is, is it ever too late? I don't think so. I think one thing is, when they're little in kindergarten and preschool, the kids, they don't see the differences, right, and the kids just embrace everybody, but around third grade, I noticed that the kids started to be very, very aware of difference. No matter what that difference is. Exactly, right? They really focus on it, and so at that time it became... the friendships became a little bit more difficult, and when it got into adolescence and middle school, that's difficult for all kids, but especially when you are different and you need support and you always have an adult with you, right, then it's really difficult. So I think what... Going into middle school or going into a high school, maybe what you need is support for the other kids. You need some kind of support that's going to help you make friends in that situation, because teens, they aren't as inclusive as five year olds, right? And hold on onto that thought about socialization, because I know we're getting questions from the chat as well, but first I wanted to talk, because you had talked about goals, and we touched on that and we got... We had a lot of questions with our RSVPs about goals, so how do you ensure that your child's IEP goals support inclusion? Iris, do you want to start? Either one. -- I think I would say the expert here is definitely Karen with the goals, but we have definitely just focused on making them... again, tailor them so that they are met in a general ed setting. That's the most important thing, social... I'm sorry, just general skills, life skills, which is what they always try to push onto you, right, when they are trying to push you onto... And SDC, it's like, “Well, she needs to learn how to tie her shoes, how to do this, how to do that,” and my thing is, we can do that. You don't need to do that. You teach the academics. We can be in charge of the life skills. So, again, not making it about the life skills goals. It’s the academic goals, right, which is what school should be teaching. We as parents, we could teach the life skills. and guess what. You can have tying your shoes and other things be OT goals that they could be working on with OTs. They don't need to have that as a substitution for math or reading, but yeah. Okay, Karen, I know this is one of your favorite subjects. Everything I know about goals is from having got it wrong. I wish I could go back and rewrite all of our past goals, but I think the big thing... The best advice I ever got was from Mary Falvey, and she told me, “See if you can write in ‘with typical peers,’ or ‘with same age peers’ into every single goal.” And there's some goals I just can't get it in, but I attempt to get that phrase into every single goal that they offer me, right? And so just focusing on, yeah, this is a great goal, but can he do it with kids instead of doing it with grown ups, right, so to try and encourage them to have him working with other kids, because it's great to learn from other kids. And then the other thing I think I got wrong for a long time, and most people are getting wrong, yes, definitely you don't want the life skills kind of goals. You want academic goals, but you don't want to replace curriculum with goals, right? I thought... I always thought that his curriculum was going to be what was in the IEP, right, but what the... They still have the same curriculum as everybody else. The gen ed curriculum is for everybody. What the IEP goals are supposed to do is give them access to the curriculum, right? So, you want to think about your academic goals as what do they need to have access to what's already in the standards for all the kids, right? And so thinking about it that way... And I had some really silly goals that were things like, oh, that he’ll learn the points of the compass, right? And then it's over in a few weeks, right? But you want to say, okay, he's going to learn vocabulary from each unit in the social studies, right? Not just from one unit. You don't want to be very specific in the goals, like he's going to learn this or he's going to learn that. You want to learn something like writing, for example. If they can't... If the rest of the kids are writing an essay, maybe his goal is to write three sentences, right? And that gives you that access, right? And even more, if they're working on typing, then they can type those three sentences and then they can work... That's the other huge thing about goals that it took me a while to really learn, but instead of sort of all living in their own little universe, then your... the therapist, if they're getting related services, then they can start working, like, great, we're going to work on typing, but we're going to work on typing those three sentences that you also need to be working on for your English class, and so they're getting that carryover. It's relevant. They're not sitting there typing or writing their name over and over, and again, it's that repetition of goals that so many of us see with our kids, and instead, let's make it fun or relevant to what they're doing or... so they're doing the same thing as their peers, but they're getting that support while building their skills. And, I saw that Meghan and Lexi put in our core... our Common Core Connector article, which is really important, everything that Karen just said about... We've talked a lot with Dr. Solone about this as well: aligning your goals to the state standards, and if that seems really overwhelming, because Common Core is so exciting to read, but look, if you go to our article, it will break that down and also give you links. Common Core state standards broken down to a Common Core connector, which really breaks it down further, so you understand what it's doing, and then many of those are then tied to essential understandings, which is really the core of what kids are supposed to be doing here, and that can be really your first stop for some of your academic goals, going... Instead of... I mean, I used to sit there and be like, “What am I going to put?” And those are the years that I look back, because I was given goals and I thought that I was reworking them and they were great, and then when I learned later, like you, Karen, and I wish I could go back and rewrite some of those goals, and it's like the whole... The foundation that I need is right here, as you said, Karen, as it is for everyone, and this is where I start, and then we figure it out... The Core Content Connectors are not the goals. That’s the important thing to know. The Core Content Connectors are already your kid’s curriculum, right? What you need the goals to do is what they need to access those, so where’s the gap, right? What will... What's preventing... What's the barrier? And then once you know the barrier, you know, okay, we need them to be able to do this. You need to be able to type in order to write the essay, right? And talking about goals, I mean, accommodations and modifications, key supports, right, needed for inclusive classrooms, so what are the top accommodations or modifications that are essential for your child's success in that classroom? Iris, why don't you start this one? Yeah. For our kids specifically, a lot of visuals, because they are visual learners, so we definitely have to put it into our accommodations and modifications that we needed visuals. We have a behavior intervention plan, so with the behavior intervention plan, we have different strategies, like the first/then strategy, choices, extended time, breaking down the material also. Shorter, like you said, Karen, maybe three sentences. They are writing a whole paragraph. Those kind of accommodations. And obviously the aide that we already requested from the beginning. So, those are the most relevant. That has changed a little over... and it would change... Magnus is on modified curriculum already in second grade, so we're kind of blending what's an accommodation and a modification, but we've used a lot of... Yeah, visuals has always been there, and also having access to different kinds of audio books, but also modified texts, right? He can read and... but it's not fast enough for him to keep up with the class, right? So, we all... Very often when he's doing a book with the class, he will have three other kinds of books. He'll watch the movie, he'll listen to the original text, and he'll also have a modified text that we've got from online, right? And then Clicker. That's been really important. He's still not writing expressively, so for a long time we had a scribe as the accommodation, but that hasn't been that good because it doesn't encourage him to write or to formulate how to express, so we've been really trying to work with Clicker, which is a program that helps you write. -- Sorry, is that assistive technology? Yes, yes. And I would recommend anyone to have an AT evaluation just to see what is out there that can help, like text-to-speech program. Speech- to-text doesn't work quite so well with our kids, because the computer doesn't understand them, right? But having it read aloud is really good and just involving them in the technology. I wish we'd done more than that, because suddenly we needed the technology, like anything, right? So, yeah. So, those things... I used to make a lot of books for the words to pre-teach him the words, and I actually used to... In elementary school I’d always ask... be begging the teacher, can I get the words for science and the words the social studies two weeks before, and then I would make him my own books, just a picture and the word, just to get him familiar with the language, because vocabulary is a big thing for children with Down syndrome, not having a wide enough vocabulary because they learn to talk late. And so we did a lot of that, but that was me doing a lot of work, but it shouldn't be me doing a lot of work. Somebody else should have been doing that work, but they worked, so I did it, right? But those things, I think, just having a sense of, he needs extra support to access the material, and then he also needs a different way to show what he knows, because he can't write an essay. Finally, we've got him to a point where he's fairly good at doing bubbles on a quiz, right? But even that... Impressive, Magnus. I'm not good at that. We have mastered the bubbles on the quiz now. We're good. What you just said is so important, Karen, and Cheri said something in the chat that aligned exactly with what you just said, which is, “One thing to keep in mind when kids are doing projects is what's the goal of the assignment, and if it's not writing, allow them to dictate.” And I tell you, and I probably said this before a million times, Lena was always required to write her name at the top of... and she can. It's frustrating, it's hard, and guess what. She doesn't want to do her math assignments, and then we had to try to boil down what was going on. It's like, oh, she hates math. She doesn't love math, but besides that it's because it was starting, and it's like... And then you have to write the numbers and you have... She couldn't concentrate on the math because she was having to write it, so it's really also digging in and figuring out what accommodations are appropriate, and sometimes you give some somewhere and you realize the problem is something else, and it's... It’s really, again, listening to that child and then... Like, one of our hats and your whole... It’s kind of a mystery really figuring out what it is. Exactly what Cheri said, right? What's the goal of the project, right? Because if you're trying to teach her how to write her name, you need her to write her name. If you just want her name on the sheet, give her a stamp with her name on and she can stamp it on everything, right? Because she doesn't... -- We’d have loved that. Go back in time. Give Lena a stamp. Now she has her computer and the AT is huge, right? And it's often misunderstood by schools, but I push for that. It's like, “You don't need this until later. You don't need this until later,” and then that is going to be her... really her key and her touch points to the world to be able to communicate with... like all of us, right, or we’re texting or we’re looking somethign up on Google and again, her voice, she can't just talk to Siri. Siri’s not going to... We're not there yet, but hopefully... That's often the key, is getting people to step out of their mindset that everything has to be in this order, right? You have to learn to write. Once you've learned to write, you'll learn to type. But if you're never going to learn to write, learn to type first. Something else that really comes up with inclusion is who is modifying? Who... Across Magnus' experience, who is modifying that work? Like you said, you were doing that pre-teaching, which by the way, my daughter, different circumstance. She's deaf and hard of hearing, so we do pre-teaching vocabulary words with her DHH teacher, because she's also not getting that incidental learning, but like you said, you were doing a lot of that work. You shouldn't have to, but who is? Yeah, I shouldn't have done it but that was... That's kind of part of the whole Club 21 thing, is that we were being given a lot of information about how to do it, and if there's no one at school doing it, you kind of think, well, I know how to do it, so I'll do it, right? Who was or is doing that for Magnus? So, now we have quite a lot of support, because in his high school they have co- teachers, so when he's in a co-taught class the co- teacher does it, and when he's not in it... When he's in general ed class, then there is a case carrier who is a special education teacher and she does it, but a lot of the time actually, it does fall on the aide who does a lot of modification on the fly, but it's kind of under that teacher’s... And a lot... So much depends on if you have an aide who can do that, right? Because some of them have that knack and some don't, right? -- And it’s not their job to do it. Not their job. Not supposed to be doing it. That was the big struggle, getting it written into the IEP. You, the gen ed teacher, and the special ed teacher need to have 15 minutes minimum a week to collaborate so that the special ed teacher can make the modifications. It should be an inclusion specialist. It should be a modification or accommodation specialist like they have in some districts, but if your district doesn't have that, then you need the learning center teacher to be collaborating. You can't make modifications if you don't know what the... what's happening in class, right? You need a lot of information, and as a parent, that was trouble. I never had that information, right, or I'm bugging the teachers for it, right? And they're saying, “Oh, don't worry, don't worry,” but you need a lot of information. Ask the question, right? When you're sitting, you're talking, if your child is going to be in the class, it’s like, who is going to make sure... Who is... If you do need modifications, who is going to be responsible for that and have it written in the IEP. Yeah, right. And for us, that's exactly what we’ve done, is push it back onto them, right? We want to know in writing, so in an email format, who is responsible for this, and once I get the, ‘Who is responsible for this?’ what has happened for us is when they send homework back, it's like I'm able to see, okay, this is what you're trying to do. How are we accommodating this, right? How am I supposed to be teaching this? How are we doing homework at home with this, right? Also, I don't know if it depends on the school or not, but for us, she's in second grade, and they send some of the work that she is completing at school back at some point, maybe a couple of weeks after or something, and when I look through that work, I'm able to see like, okay, did somebody fill this out for her? Was she just told to write this? So, I'm able to see if she's actually doing things and they are accommodating things or if she's not doing anything. So yeah, holding somebody accountable and then going back to that person and saying, “Hey, can we have a meeting and see how we're going over this, how we're doing things?” That has been very helpful. And one more thing that I do want to mention that we were able to do is with our speech therapist, we were able to have her... some of her speech do it in the readings that they are doing in the classroom, so that was key, because she is the one sending that work that you're talking about, Karen, the vocabulary, things like that, for some of the lectures. Not everything, but for some of it, she's able to send it, break it down, and it has been very helpful to prep her for all of these readings. Definitely. Really quick clarification. And Isabelle was asking, Karen, is Clicker an app? Clicker Connect, right? There are apps. It's a whole... It's got a whole batch of different stuff, so you can actually put it on a Chromebook, or you can put it on Windows, or you can put it on an iPad. There's Clicker apps as well, so they've got a whole batch of different things and it's a great software if you want to look it up. And just something really quickly that you were saying too, Iris, about knowing who's doing it. I always have... Don't worry, Iris, we all... We have no school either. I mean, seriously, yeah, you could see screaming in the back of me any time now, so... But we always... In our IEP, we have to write the prompt levels on the back of any classwork that they're getting. Doesn't always... But it's in our IEP, so we can look at that. And I'm looking at the time and we're running low on time, so I really... I definitely want to get to lots of questions about socialization. So, we would love to know if and how this is written into your child's IEP, both with social academic strategies such as peer mentoring and working in groups, and social emotional like self-advocacy and authentic peer relationships. So, Iris, do you want to start that? Yeah, unfortunately, we have not done that. We do have the peer mentoring. That was something that actually the school district from the get go told us that they were doing that, and we were happily surprised that they are already enforcing that, so... And I've heard from other kids, when we go to the park, saying, “Oh, Kayla, I'm the one that helps her do this and do that,” so that's just very refreshing, but we don't have it written into our IEP. That's a great idea. What about you, Karen? So, Undivided... Every day I learn something new and even today, right? These are great words I'm going to borrow them for my IEP next week. I think, yeah, we have had... Came from a parent, by the way. Those words came from a question from a parent. -- Fantastic. I love it. We haven't had anything formal, but even in elementary school they had it as part of the IEP that the aide was going to help him with games and stuff, like getting him involved in playing with the other children, understanding how four square works and stuff. They did a lot of that work, right? But then in middle school, it kind of dried up. And then in high school now it's very, very difficult. He really... And part of it is that there isn't that much downtime in high school, rght? Things like clubs, they happen at lunchtime, and so there's a friendship club where they... He doesn't really often want to go to that, but he does like going to the theater club where it's mostly gen ed kids, but he needs a lot of support to go to it, right? And then some days he just wants to sit and eat his lunch, right? And he needs that downtime. It's hard work socializing with typical peers, and so you have to let them have that break where they want to sit with the kids that they really connect with, right? That it's easy to connect with, right? And so... I mean, I think you need a balance of not pushing every minute of the day as a learning time, right? But I found theater class has been a great way to really push that, because you know why? The theater kids, they're so animated and kind of... They can put on a show, right? And so they're really good at working with him, right? Whereas those other clubs, I don't think it would have worked quite so well, right? And I think that's better than the Friendship Club where everyone is there to kind of make a friend or something. That just hasn't quite worked, for him, but that's another model that does work for a lot of people. I love that. I love what you said about theater, and I have to say really quickly, my daughter who's in sixth grade this year, she's in choir, and we picked it because it was the one special that went all year, like consistency, not knowing, and she started out so shy. She would not sing. I mean, in this big class too, she would not sing, and by the end of the semester, right before their winter recital, the teacher asked for volunteers to come to the front of the class where you kind of had to audition, right, or something, and so she didn't even know all the words to the song. She immediately raised her hand and went and then... And so I had no idea when we showed up for the winter formal, and she was there with her peer buddy, which, by the way, happened organically through this class... This amazing girl who has all these different colors hair and is such a badass. I will say that. She's... And so she also went up, and these four kids went up. and then there were the four kids that started off this song, and there was my daughter who did that, not as a token, not as somebody... because she felt confident enough to go and audition, and that... and she met her friends in that class who have then now become her peer mentors. In her middle school, they have... It's called like a pause. So, it's three times a week, I think, where kids can go... They can meet with teachers. They get help with classes. Every kid, right, throughout the grade, and there's kids that they might not need that time with teachers, and so they have become... They help support her in whatever she's working on, and that came very organically from the relationships that came from that class, so that can always happen, and I would love if you've had success in this, please throw it in the chat window. We would love to see what's working for you. It's one of the questions we start out... And it is. These academics, all these details that are so important, and at the end of the day though, one of... I'm... So, I will speak for myself. Part of that vision statement... I mean, I want my daughter to be around people that love her and support her and respect her for her, on that level, not because somebody is making them or it's... You just... You want them to be a part of things and be respected. Our kids are cool. We want people to appreciate that. And it's hard and it's emotional, so I would love to know what works for other parents as well. And there's... I see there's a lot of questions coming in, like, “Can you request for mentoring for kindergarten?” We did. We even pushed for our school to have peer classes, so every class had a buddy class. There's a lot of different ways we can do that and that actually... I see that question from you, April, and I think from Evie as well. Something we really need to follow up. Karen and I have talked about this a lot. Have one of these talks about socialization, but not just a peer buddy for your kid. If you can, really push that it's a great schoolwide program to meet younger classes with older classes. There was a fifth grader who loved my daughter. They were in a peer buddy class and so guess what. When this cool girl in fifth grade is talking to you and her friends are and it just starts building, it just normalizes that we're all people, and it's important for people to see that model, especially at the young ages. And I'm watching the time and I'm like, oh my gosh, there's so much more that I want to get to, so I'm trying to think of like... This is... If we can just answer this really quickly, because it's really important. Without collaboration, inclusion can't happen, right? Relationships with our school team, they're essential. So is communication. And a balance between that strong advocacy and preserving those relationships, it's hard. Like not pretend... You don't always love everyone on your team, right? You don't always feel like they're really on your child's team, even with the good intentions, but all that said, have you encountered... I would love to know one sentence, one thing that you could tell people, is it important, whether those parents who... They don't want to be seen as that parent. Or the other side of the spectrum. They don't see the value in nurturing those relationships. Why is collaboration essential for what's happening with your child, and how do you handle it if you feel like there's someone on... maybe a gen ed teacher, maybe somebody on their team that really doesn't believe in what you're doing? How do you handle that, because that's a very real reality? As quickly as you can, and then we're going to have to wrap it up. I know. Inclusion is all about changing the environment so that the kid can be successful in that environment, right? But you, as a parent, cannot control your child's environment. The school controls it, the teacher and the other kids, and you have to get them all on board on your mission. They all have to be part of changing the environment to work for your kid. That's your job, is to get them on board, but then their job is to do the changing, right? You can't manage it all, so just... Yes, sometimes you have to be real and say things to people that are uncomfortable, but also you have to just sometimes put yourself in their shoes and think about what does it feel to them, and how do they see you, right? So, there's a double empathy thing going on where you have to really think about, well, what's it like for them to have my child in their space and they've got all these other things going on and other responsibilities and then also thinking, well, how did they see me being the pushy mom, right? And everyone must know that frequently our teachers, especially gen ed teachers, you said, Karen, they're not getting that training. They're not given the resources, they're not given the collaboration time. They're kind of like, here's this... maybe, here's this professional development and go figure it out, and that's... It's setting that teacher up and our kids up for failure, and so how do we then work together to make sure that they are getting supported so our kids can get supported? If you can get across to the teacher that you're there to help them, and that... partly that's just coming across as a helpful person, like thinking to say, “How are you doing? How are you feeling about it?” But also help... getting involved in your school community, being somebody... being one of the helping people, right, so getting involved in your PTA, your PTO, or whatever, it changes your relationship with those teachers, because they see you as someone who's there to help and support, and sometimes in the IEP saying, “Well, hold on, if that's going to be her responsibility, doesn't she need some extra support to make that happen?” so the teachers see that you're not there to rain hard work on them, right, but you're actually there to create the support that they need to make this work. Yeah. I mean, part of it too is give them the benefit of the doubt, right? Try to understand that most likely teachers want to teach, right? Otherwise they wouldn't be teachers. So, hopefully that is the case, and if that's the case, take whatever little opportunity you might have to connect with that teacher, and again, show them that you're there to support them, that you understand that it is tough, but that it's worth it. So, I think that's just supporting them. The biggest trouble is you start with a new teacher every year, right? Or six new teachers every year, right? Okay. So, really quickly, one sentence of your biggest lesson learned or the best piece of advice you want to give to that parent who's intimidated, or frustrated, or really just a little bit confused, what... So, lessons learned or piece of advice, how can you... Lke, one or two sentences. Teacher, a school psychologist, all these people, yeah, they are highly trained. They have all these credentials, but they are not the expert on your child. You are. If SDC is what is best for your family, that's okay, but don't let them tell you that. If you want to try inclusion, push for it, try it, but don't allow them to say, “We can't do this,” so just go for it if that's what you want to do, but if you don't, if you're... If this is not a good fit for your family, it's okay. You are the expert on your child and your family. That's very good. Iris. I think you have to look at that big picture, that big vision, right? What do you want for your child, right? And what we know is that when they grow up, there's not going to be a special Target that they can go and buy their socks in, right? There's not going to be a special workplace. There's not going to... We don't want them in a confined, special world, so they have to learn how to be in the regular world, right? And to do that, the big phrase that comes back every time is you can't learn to swim in the parking lot. To learn to swim, you have to get in the pool, and that means you have to risk drowning, right? Every parent who's taught a kid to swim has taken that risk, and that is... It's a big plunge and it's scary, but in the long run, it makes them safer, because now they're going to know how to swim. Then they're never going to drown because they didn't know how to swim. They might drown because of some other reason. And one more water analogy, which we don't have time to get into, but you said to me the other day, Karen, that if you could go back and tell yourself something, it was, ‘It's okay to rock the boat.’ You don't want to drown everyone in it, right? Collaboration, team building, but give yourself permission, because a lot... You said something that I thought was great. A lot of people think, oh, I got my kid in the class. I don't want to lose my place. I don't want to rock the boat, right? I was very scared, because I felt like, oh, we got... They let us in to kindergarten, they let us into first grade, and every year we had to get let in again, right? And every IEP. So, I alwas felt like we were just lucky to be there, and so it wasn't... It wouldn't be a good idea to say, “Well, actually yeah, but we need to have more support. We need to do this better.” And I wish I had done that and I wish I’d pushed more for a proper inclusion facilitator or some kind of inclusion support early on, and just doing it more properly. That I shouldn't have accepted that kind of like, “Well, we're doing it, so that's okay,” right? But I should have pushed a bit more to do it better. Thank you, Karen. Thank you, Iris, for sharing your experiences and your passion and your honesty, your truth, and it means so much really. We can't say it enough. Parents learn the most from other parents. I wish I could have heard all of this when we were starting. It was just really... We weren't a part of anything like Club 21. I wasn't listening to things like Undivided and I had nowhere. I just knew something in the back of my mind. This felt really... My daughter's personal experience felt really ugly, and even as she gets older, it's still, even with the greatest intentions, I can't believe we're having a conversation about if she's allowed in a room and it really just continues to... Really there was just something so unsettling, so thank you so much for being here and for everyone here, listening and sharing all of your stories. We know that this is not easy. None of it, right? Inclusion and beyond. So, if you want or need deeper support and a one-on-one guide to talk you through inclusion, IEP priorities, goals or anything else, our Undivided Navigators like Iris, they can do that alongside you, so if you want more information on our free 30 day trial, Meghan is going to put the link in the window. Our mission is to support you so your children can thrive, and sometimes the systems that are built to help us can feel like they're going to break us, so we'd love to support you and your family in any way we can, and one way we can do that are by talks like this, and we... So we hope you're going to join us next week for our Undivided Live. We're going to be bringing back educational advocate Dr. Sarah Pelangka. She's going to be talking all about accommodations, modifications, and the fine line between the two. So, we talked a little bit about that today so we can dive even deeper next week. That's next week at 12:30, right here on our Facebook page. Meghan is going to put the RSVP info in the chat window. Lastly, if you're not already a Facebook group member, you're missing out. So, our group is private, but it's open to any parent raising a child with disabilities, and we're having a virtual happy hour next week, so let's get together and talk. I can make Iris and Karen come. We can talk about anything that we want. We just... We miss people, and so let's all, whether you can come for give minutes or 30 minutes, just come hang out, grab a water, a smoothie, or a glass of wine. We don't care. We just want to see you. So, we would love to say hi, so come in to the group and thanks for stopping by. We hope to see you soon. Thank you so much. -- Thank you. Bye.