 happy to be able to call a friend as well. So I first learned of Erin's work with some things that she was doing with Carolyn Musselwhite, which she continues to do with Carolyn Musselwhite. And most particularly her work around the Angelman Foundation and building the communication series that I've pointed many of you to over the past couple of years. So Erin's background is that she was a union organizer, and I can tell that that's a good skill to bring to this work. She's a transplanted American who we're hoping gets to stay in Canada because we want to keep her. Erin went back to school after her daughter Maggie, who you're going to learn a little bit about, was born to learn more, and she learned lots more about educating and educating, wow, children with Angelmans. Recently, I know some of you may have been at the AAC in the desert with Carolyn Musselwhite, and Erin and Carolyn from what I understand did a bang up job of giving people wonderful resources for thinking about communication and literacy for kids with Angelmans and other challenges in terms of literacy and communication. And mostly, I know Erin is mom to Maggie, who's there in the middle, and I'm going to also give a shout out to Ella, or Eileen, who anyone who follows me on Facebook or follows Erin knows challenged our Prime Minister in a brilliant fashion when he was doing the town halls in Kingston. So Erin's doing lots of things right. This evening, we've invited her not so much to talk about her work with literacy and communication, which I think will probably come into the talk at some level, but because Erin has a wonderful message on inclusive education. Last summer, when I was teaching the AAC course, I had Erin come into the class and give this talk, or I think a similar talk. And by far and away, it was the best talk I ever heard about inclusive education. Still is the best talk I've ever heard. So no pressure, Erin. But we are delighted. And really, in terms of thinking about AAC and communication, the foundation of everything is having meaningful active participation, so which means inclusion. So I'm going to quit talking now because I'm already taking up too much time. And with that, Erin, we're very glad you're here. And please, feel free to begin your talk. Erin, are you muted? We can't hear you, or I can't hear you. Something looks kind of funny, Karen. Give me a second on my end. I don't think she's muted. Erin, are you there? Oh, dear. She's not muted. No, I see that. It does not. Yeah, we can hear you now. Yep. A little bit quiet, but it is absolutely working. And then, Erin, I'm not sure what happened there, but we lost your screen. So you might have to hit share screen again. I'm sorry. Headphones we used when we did the test. So they seem to have just suddenly stopped. Sorry about that. No worries. I'm glad you have it as fair. So let me know when you can see my screen. It's back. Yeah. So I'm going to mute, too. Okay. Thanks, Erin. So I'm hoping the volume is the sound quality coming through okay, because I'm not using any form of headset now. Yeah, you'll be okay. Okay, great. All right. Well, thank you for that. And sorry about that. So really, all I'm going to do tonight is talk about our journey with Maggie, how we came to understand inclusion, given the context of her diagnosis and everything we were told to expect for her future, and then what that has meant in terms of our relationship with Maggie's schools and how we've been planned for education and so on. So here's Maggie. At six weeks old, she was born during the Big East Coast Blackout. I don't know if any of you guys in Alberta experienced that, but literally just as she was about to be born at home with a planned home birth, the entire East Coast of the United States lost power, and we had to try to get to the hospital. And we knew at that point that this must be a really powerful kid coming into the world if she could short-circuit an entire electrical grid. But about a year old, she got a diagnosis of Angelman syndrome. And I knew when she was a few weeks old, I remember actually putting all my Dr. Sears baby books away and deciding that I just wasn't going to compare her to babies in books. And the biggest thing that she didn't do was she didn't make eye contact and she didn't respond to sound. So at a year old, they believed that she was deaf and blind, and then genetic testing confirmed Angelman syndrome. So she has a really interesting combination of that kind of dual sensory issue of low vision, cortical visual impairment, and pretty profound auditory processing impairment. So when Maggie was diagnosed with Angelman, we were told she might never walk, she would never talk, certainly never learn how to read or write, probably would never learn how to dress herself or toilet herself or feed herself or be able to protect herself or sleep through the night. And the major message we got from the medical community was that she would never be more than a toddler, that her growth would always just be that of a toddler. And we heard that and believed that it meant that therefore she could never have friends, she would never learn, she would never be able to communicate, obviously read or write, have dreams and be able to realize them, be able to speak up for herself and make a contribution and just live any kind of ordinary life. And that was just a message that was pounded on us from just about every doctor appointment we had. We were told when we got the night diagnosis, take her home and love her. And we just really understood from that, don't expect anything from her. When she transitioned from preschool into the school system, we had one of those big meetings with all the therapists and the social worker and we talked about her transition and I remember just sitting there speechless, staring at this form. Because the second, the bottom half of the page went on, there was like four copies of it for everything that they felt that she needed assistance with and there was nothing that she was listed that she could do well. No strengths, no nothing that anyone was expecting that she would actually contribute to the classroom. And it just was such a message of this is a child who drains resources but doesn't actually contribute anything. Her school documents really reinforced that message as well. I mean every assessment, everything we saw just described her with words like severe, profound. Everything was pre, pre-communicative, pre-everything. A nine month age equivalent at age four or five. Not just in the first percentile. I remember the psychologist making sure we understood she was in the first one tenth of the first percentile. Helpless, needy, consuming, medically fragile and low functioning was a term we heard a lot. It was really clear to us that the vision behind her school plan, if you just looked at her goals, if you looked at what was being written in her IEP and what people were talking about and what they were going to work on with her was that the number one goal for Maggie, the vision was that she learned to reduce her burden on others. That was the primary responsibility she had in school as though her support needs were almost her fault and that that's why we needed to prioritize anything that would reduce her burden. It was very clear from the behavior plans and the conversations but also even what was written in her goals was that her job was not to disrupt anyone else's learning. She was going to be allowed to be in the regular classroom but she's not going to be allowed to in any way disrupt the regular classroom and she would be removed from the regular classroom either temporarily to walk in the halls or long term if she didn't learn how to not disrupt anyone else's learning. What we saw fairly quickly was that meant that she wasn't even supposed to vocalize that her job sitting in group activities in kindergarten, she actually had a wonderful kindergarten teacher and a very loving aide but her job was to sit passively and observe the learning happening around her because if she vocalized or got excited that was perceived as a problem because all those other kids are here to learn and she appeared to be there to observe. There was a lot of emphasis on obedience and compliance and responding to adult requests, responding when prompted. Her assessment was all about getting the correct answer multiple times because we just can't trust that if she got it right the first time that she actually meant it. There was sort of this vague thing that maybe we'd find something potentially useful she could do and I remember brainstorming, hearing special educators say, well, she might be able to learn how to water plants. Let's look into that as though that was kind of this option that we might one day get to. And so for us, I met my husband on the step-step of Seattle Jail after he had been arrested in lawful protest. The class section lawsuit for his arrest and the arrest of 2,000 other people was CTV or Seattle that's named after my husband. So he was arrested after lawful protest. I had been so severely tear-gassed that I had ended up in the hospital. So we knew how to organize, we knew how to agitate. We knew how to have a vision of what we want society to look like and how to work towards that. And so as we started figuring out what was our vision, what was our vision of the family, what was our vision for Maggie, what I've really started looking into is what predicts what happens to our students after school? What predicts their life? And feel free to take yourselves off of mute and chime in here and say, what it is you think predicts life for our students like Maggie, our students with significant disabilities after school? If you're too shy, I'll just give you what I hear the most often. You can also put it into the chat, and I'm monitoring the chat and Ross is monitoring the chat. So, yeah, but take a mic, people. Making an uncomfortable silence with an expectant pause, hoping to get a response. Friendships, says Cori. Our expectations. I'm getting connections with others. Belonging. Social interaction. Excellent. Any comments that suggested that getting to your guest with your husband was very romantic? We sent a card to the mayor, Mayor Paul Schell of Seattle, thanking him for his own backhanded way, arranging for us to meet. So the most common things we hear are a lot of what you guys just said, one of you may have already heard this presentation, but full placement, right? So for those of us who are advocates for school inclusion, we absolutely believe that getting inclusive placements for our kids is important. We know the research shows that placements matter. Independent functional skills and life skills, and just being able to function in a variety of contexts and environments, we know that matters. Communication ability, and being able to express ourselves and advocate for ourselves, and having appropriate behaviors and having friendships. All those things matter, and one of these are actually what predicts life after school, because interestingly, and Eric Carter's research is really good here, showing that we can do a lot of things right at school. We can have inclusive placements. We can teach kids a lot of skills. They can have really effective behaviors that make them really just easy to do it. They can even have friendships, be friendly with kids at school, and still at 25 find themselves sitting on the couch at their parent's house without a life. And we cannot have a lot of those things in place. You can do a lot of things wrong at school, and they can still have lives out in the community after school. And what predicts this? The biggest predictor is actually none of these things. The number one factor is parental expectations. What do parents expect is going to happen, and what do parents value? So if parents value friendships, and parents expect that that's possible, then parents will work tirelessly to make it happen. If parents expect post-secondary education, and parents value post-secondary education, then they will work tirelessly to make it happen. There is nothing that predicts life after school, and this is actually particularly strong with employment. If parents value employment and believe it's possible for their son or daughter, their son or daughter will be employed after school, regardless of things like independent functional skills, communication ability, school placement. Just really fascinating work. And what Herter's work has shown was that our parents' expectations form very early. So think about how Maggie was a year old, and we were already being told just take her home and love her, but don't expect anything else. Expectations form very early. Our expectations reflect what we know. So if we as parents actually have the experience of knowing adults with disabilities, knowing adults with disabilities who have really meaningful lives, or what Carter calls enviable adult lives, then our expectations are much higher. But if we ourselves were also educated in segregated settings, where we didn't know anyone with disabilities, and we don't as adults know anyone with disabilities, then our expectations are going to just simply reflect what we know. And we know that experience shapes expectations, so that if we take a risk and try that inclusive preschool, and our child is welcomed, and our child is accommodated, and our child has success and developed a sense of belonging, then that experience then shapes our expectations, and we expect to keep finding that, and we keep taking more of those risks to make that happen. And similarly, our expectations shape our experience, so that if we expect that our student will be welcomed and accepted, then we're actually going to seek out those experiences and make them happen. But the reverse also works, experience shapes expectations. If we try it and we feel rejected if we feel our children are rejected, if we feel our children are not supported, then that shapes our expectations and that shapes the experiences that we look for. So we know that our expectations change based on the opportunities that we're able to provide our students and the support that they are provided, and also really that parents are provided, that when parents are supported to have high expectations and to take those risks and our kids are supported, our expectations go up. So there's all these things you can do as teachers, right? But if it's not part of your work to make sure you're raising the expectations of the parents of your students, then a lot of your work is not going to be as powerful as it could be unless we're making sure that those interactions that we have with families between families and educators are actually raising expectations. And a pretty startling part of Eric Carter's work shows that the longer that families interact with the school system, the more years of interaction we have, the more intense our interaction with the school system, the lower our expectations become, and he calls this realignment, that our school systems tend to have low expectations for our students and our expectations end up aligning with school systems all the time. So I was really, really fortunate. As a political activist anyway to find a program in New York State called Partners in Policymaking, Maggie was very little, so I went to Partners in Policymaking when she was only about 18 months old. And complete fluke, I just happened to get to meet Lou Brown. I was actually assigned to introduce him, so I had to go research him. And I'll tell you, the internet was actually still a bit new 15 years ago, or 14 years ago when I did that. So I looked him up and everything I found, I remember coming back and introducing him as a radical inclusionist. He truly believes that every person can be included. And he challenged me because at the time that Maggie was diagnosed, I was actually, since I keep talking about my politics, I was actually working full time on the presidential election of 2004 and trying to get the incumbent out and a new person in. And so we were in Missouri. I had taken a position in a swing state so I could try to work on that election. And in Missouri, in St. Louis, they have separate school boards for students with disabilities. And my interpretation about the time was, wow, they so value these kids who are so different that they don't just get their own classrooms, they don't just get their own schools. They actually get their own school districts, right? I mean, they must put all the experts, everyone who knows that in this one school board, so that there's a separate board for students with disabilities. And so we were trying to decide, should we stay and go back to New York? Should we stay in New York or should we go back to Missouri? And Lou really challenged me and he said, what is your number one concern when you're thinking about Maggie's future? And she was just a baby at the time. And I said, her safety, she's so vulnerable given everything they've told us to expect that angel message on her safety is my biggest concern. And he said, then you need to have her included because we know from all of the data, all of the research that safety is found in wide open spaces with people who know Maggie well, who have no power over her. And her vulnerability is going to be greatest in separate closed spaces with people who have power over her and no competent witnesses. And I have used this so many times because it was so profound when he told me that and it has such logic that we have repeatedly had to kind of explain ourselves. So why is it again that you want Maggie included in school? What do you possibly think she can benefit? What can she gain from a regular grade eight classroom or a regular high school classroom? And what it always comes back to is because that's where she's safest. She's safest in wide open spaces, open to the public with people who know her well, who have no power over her and that is her peers. And honestly, every really big challenging issue we've had the school system with something that happened over the course of Maggie's school career happened because she was removed to a separate or enclosed space with people who had power over her and no competent witnesses. And in exception was made, they did something that they wouldn't do to students without disabilities because of the nature of her disabilities and then that became whatever crisis we had to deal with. So that then is the foundation of everything we've done. I did not support school inclusion until Lou Brown described it this way. And if there is nothing else that comes from Maggie's school inclusion, then she is going to be safe because she's learned how to be where all the people are. She has many, many relationships with people who know her well who have no power over her and can speak up for her. And in fact, the most powerful meetings we've had with the school system have been when her classmates come into her IEP and planning meetings with us and speak up because so often the perspective of the children is very different from the perspective of the adults and what the Maggie's fellow students have to say about what's working and not working has just been incredibly important. So from all that, we were able to develop a vision for Maggie and our expectations for her. I really wanted her to be taught at school. I felt like everything that we were working on, the school system was willing to have her be included in the regular classroom, but it felt like she was always going to be an observer. It felt like the phrase that I heard the most was that she would be exposed. She'd be exposed to the curriculum. She'd be exposed to the lessons. She'd be exposed to the activities. But it felt like she would be sitting there watching them rather than cognitively engaged. I wanted to know that she was teaching. I mean, my grandmother was a professor of education. My entire family is teachers. I wanted to know she was going to be taught, and I wanted her to be taught in that regular education classroom. Maggie's made it very clear to us, she's a teenager now, and she has no intention of living with us once she's an adult. Her very best times are when she's got a very obnoxious and noisy set of friends over and they're in her bedroom, and I'm sure there's all kinds of things happening on social media and everything else that I wouldn't approve of, but it's what they do and what she has fun. We made a vision for self-employment in a job she left. I don't think that she's a kid who's going to fit into traditional employment, but we have a whole employment plan, and now that she's in high school, that's actually become the focus of all of her high school planning. I want her to develop passions and interests and hobbies and therefore be out in public pursuing these along with all the other people and you'll see her employment. One of her favorite things that she's been very low is going to real estate open houses. She just really likes seeing other people's houses, and the funny thing is now that she's a teenager, it turns out that a whole bunch of teenagers really like to do that, so that's been hilarious to find out, but it's now completely age-appropriate to go and visit real estate open houses. I want her to learn what her own unique contribution is and learn how to make it and make it and for her to be confident that when she's in a state, she's making it better because she's there and to learn the autonomy and self-discipline to really be in control of her own body and her own self rather than obedience because I don't think she can afford to be obedient. She can't afford to learn that if a person has authority or just because they wear scrub tops that they can tell her to get undressed or that anyone can just tell her what to do. And so, you know, this obviously led to lots of discussion with school and going back to those IEP goals that really did not share that vision. What was school preparing Maggie for? What were those IEP goals preparing her for? Was she being prepared to live an ordinary life or was she being prepared to live what I would call a disabled life? Because, you know, a highly obedient, passive observer is not going to be able to live an ordinary life. So, these are just some of Maggie's BFS and some of the activities that she does just with her friends. Middle school has obviously been its own adventure, but now we're moving on to high school. So, this is an ordinary life, right? This is hanging out with friends and family and traveling and just getting out to be part of the world. This is Maggie's first duckface selfie. This is one of her self portraits. I just love that she's quite a photographer. And this is our vision for her employment is if you go to a lot of real estate open houses, you'll find, especially in our neighborhood, that there are a whole bunch of houses that sit vacant for a long time. So, the house was maybe last decorated in 1972. There's an elderly couple living there. One of them passes away. One ends up in a nursing home and the house sits vacant until the kids in Toronto can figure out what to do with it. And when those houses then go on the market, they're very musty, they're very dated, there's snow all over the porch and leaves and they just don't feel clean and they take a really long time to sell. And so, our business plan for Maggie, her friends at school have already named it. It's called Totally Mag Home Staging. And we're thinking that maybe, we don't know, but maybe run it as a not-for-profit as a service to seniors and anyone who low income to come in and do their home staging. And that means getting all the snow off the porch or the leaves or just making everything polished. Maybe putting out some annuals, polishing the glass, sweeping the floor, opening the windows, airing the house out, maybe warming it up if it's in winter or cooling it down if it's in summer, but doing that whole part because we can really see that Maggie is so eager to get into people's houses and just spend that time in them. She can spend an hour just walking around a house admiring everything about it, checking out every nook and cranny, and then doing the work, doing the work to get that house ready and get that tool. To figure out this vision, to find a vision for Maggie and then be able to communicate it to the school, we really had to find the tool to help us do that. And for us, person-centered planning tools have just been essential. So, when she was young, we did something called essential lifestyle planning. And as she's gotten older, we work with Helen Sanderson, associate to person-centered planning here in Canada. And this is Maggie's one-page profile. So, one of our rules with the school system is that before anyone works with Maggie and can read anything about her supply notes or her care plan or her IET, they need to first read her one-page profile. And this has been put together with input from lots of friends and lots of educators. But just talking about how much fun she used to be with us, all the things we most like and admire about her. She's so fun. She's optimistic. She's cheerful. She's incredibly self-confident. She's incredibly authentic and very persistent. She's resourceful, and she has wicked skills on an iPad. What's really important to Maggie is being with her friends and family, being in control of her own body, including being able to move around, always having her iPads, always having many choices, including the option none of these. So, never make her choose between two, because if you don't also give her the option of none of these, then she won't even look at it. Not having to improve herself or repeat herself. And then really learning how you can best support Maggie. And this actually isn't her most recent one-page profile. Her more recent, we've gotten a lot more specific about how to support her so that she can look and listen because she can't really do those simultaneously, but how to make sure that she can understand what you're saying and how to make sure you're giving her the time to process language and be able to respond back. And this tool in particular, this is called from presence to contribution. It's a tool from Helen Sanderson and Associates. But where it's been the most important or the most valuable to us is sometimes when we're talking about inclusion, everybody thinks that they already know what it is. So whether we're talking about inclusion when she's branding to her middle school or now branding to her high school, everyone thinks they know what inclusion is and they have their own idea of what it is and what it means. And sometimes it's like we're talking on different channels because we're just not hearing and not understanding because we're talking about something different. With presence to contribution, it becomes really clear. So presence means, physical presence means you're there. You're physically there. You're physically in the space. And we all have experience with inclusion that is physical presence without any other form of presence. Having presence means yes, you're physically there but other people know you're there. They're responding to you and you're responding to them. So there's just that you have presence. You are known in the space. Actively participating means that whatever the activity is, you're part of it. And so for our students with complex needs, we've done the problem solving to make sure that they can participate in what's happening, whether it's the curriculum, whether it's the activity. Connecting means that while you're participating, you're making that social connection with other people. You're not just participating in something, just you yourself as an individual, you're part of a group experience and you're having a social connection with other people. And contributing means we can talk about how it was better because you were part of it. To me, that's what contribution is all about. And I'll give you some more specifics about kind of what that looks like. I think of it as going to, I don't actually watch hockey, but if I went to hockey, being present means just sitting in the stands. Having presence means other people see you. You have to wiggle out of the way so they can walk past you and you're jostling others and so you're there, right? You're seen, you're not invisible. Actively participating means you're all watching the game. Connecting means that when your side scores, you're like cheering and high-fiving with the people around you. And contributing means the game was more fun to watch because you were there. So what we kept discovering was that kind of the biggest issues we were having with Maggie's inclusion, the reason that she was in such a passive observer role was really because she was not imagined as potentially literate. Whatever activity they were doing, they would adapt it to Maggie, like we're going to learn about pioneers. Can Maggie learn to point to a picture of a pioneer and point to a picture of herself? Can she learn to point to a wagon that a pioneer rode in and point to her van? There was no sense that in school, we send kids to school really to learn how to read and write before anything else. We teach kids about the world while teaching them how to read and write and speak and communicate. And then once they've learned how to read and write, we keep developing those skills while we learn about the world. And so how do we use the general education curriculum to develop Maggie's literacy skills? How do we do that still learning to read phase, learning to read while learning about the world phase that all kids have at, say, grade one? And how do we extend that all across the school career? For Maggie, as I learned more about literacy instruction, I thought, you know, I don't have any expectation that they're going to teach Maggie how to read this year. What if it takes 50 years? Let's say that it's going to take 50 years for Maggie to learn how to read and write. What does a 50-year literacy plan look like? And I presented that to her school and said, you know, I actually wrote out what I thought a 50-year literacy plan looked like and said, you're only responsible for your one year. Don't think that you have to, you know, that we're expecting that she's going to be leading and writing at the end of the school year, but you have to make sure that you at least provide her the opportunities and the instruction that's part of that one that we're in. And so I believe this has just become really, really obvious to me that so long as we believe that a student is not potentially literate, we're never going to be able to actually include them in a classroom. And inclusion means that we're going to differentiate the activities. We're going to provide multiple access points, whatever the instruction that we're providing, whatever the activities that we're doing and the instructional activities, however we're assessing students, we're going to differentiate all that. We're going to create lots of access points to make sure that our students can actually access the instruction we're providing. But we're not differentiating the curriculum. Inclusion means that all of our kids are learning the curriculum. They're learning the general curriculum, the regular curriculum. They're learning what matters. They're learning about things like citizenship and what it means to be a Canadian as opposed to being from any other country and how Canada interacts with the world. They're learning about science and what natural laws, how natural laws kind of influence humans and how humans influence the planets and all of that. But we're not changing the curriculum just because of the state of disability. And there's a whole bunch of tools which I won't get into, but the first time I saw this early literacy rubric. So this is Kathy Stogler's literacy rubric and it's really just breaking down kind of the earliest steps of reading. The first time I saw this, I burst into tears because at least within an Ontario context, because we're here in Ontario, there was no sense of this. When we pushed for literacy instruction for Maggie, the assumption was this student has significant disabilities and as far as we know, no one knows nothing about literacy, so the first thing we're going to do is teach her to recognize the letters. And as soon as she can identify letters in the alphabet, then we'll know that she's ready for more literacy instruction. And that was just, I've just seen this as a really common pattern with a lot of our families. And what this showed me is in the areas of phonemic awareness, concepts of print, word recognition, fluency, comprehension, this is the development we see of typically developing children from the time their infants all the way until they start until they're in kindergarten. That we don't take typically developing really young children and go, we're going to teach you to recognize your letters. And as soon as you can actually identify the letters we're going to start working on 15. We don't do that. Here's all of the things we do with typical kids and all of the skills typical kids develop before we even get into alphabet instruction. And this became really powerful because the first time we did it was Maggie. She had three out of 25 areas that she had some early emerging skills in. This was the first time that we saw real literacy. This was the first time that up until then it was could she even be on the same road as the other kids that she was considered so different she must be completely somewhere else. Whereas this showed me the path that if we just looked at emerging literacy skills we could really see. And you can see over two years the first time we saw this out was 2012 the next time was 2014 we could see real growth and development in a way that so long as we were focusing on things like point to this letter, point to that letter we just weren't seeing that growth and development. Since 2014 I would say we haven't seen as significant growth throughout the rubric. It would be interesting to fill this out again. We haven't done it yet this school year. But what we've really done is consolidate where she's at and really consolidate language development. And then when I really found the tool that was most useful to the bridge so if you haven't seen it just google it Patsy Pierce developed this so it is an observational portfolio assessment tool you can download it from the Center for Literacy and Disabilities website if you just google CLDS UNC. So this is the first thing that pops up and you can check out the bridge protocol so this was the tool they developed in North Carolina to assess the literacy readiness of typically developing preschoolers with and without disabilities. But what it has done is just give us a lot of information about how literacy develops in typical kids and therefore how we can see it in our kids how we can see it developing in our kids and so we have these scales to be able to check out. And what I found with the bridge Karen Erickson is the director of the Center for Literacy and Disability Studies at Patsy Pierce is the one who developed this they've seen kind of what I've been playing around with it which is modifying and adapting the bridge it's still just a draft version but figuring out for our students with the more complex disabilities kind of there's a larger range of things we need more items on each scale because there were things on the bridge for example if you look at item 3 how does blank the student can engage in the act of reading it asks does the student point label comment or act out story characters during joint reading I mean that's four separate skills in one item and with our students with our more complex kids we're not going to if we keep all four of those in one item we're not going to be able to capture that so I've been stretching them out introducing some even earlier starting points and so on and I'm happy to share this as long as you know it's just completely a draft and I'm really looking for feedback but where we work with families and school teams to figure this out figure out where the student is at are they what are they doing with books do they know that books have pages do they know that books exist are they interacting with books are they stacking them and banging them have they learned the books are different from blocks or have they learned that books have pages and we have specific behaviors that we do with books such as turning the pages and looking at what's on the page you know how do they respond to being read to are they really studying the book pages and how does this change based on the technology so if it's a paper book or a cardboard book are the students behaviors with that book very different than if for example it's an iPad book or if it's a book that's on a computer screen and we're advancing the pages by clicking them out and we often see very different behaviors that way but then just kind of taking an inventory knowing what to be looking forward to observe and making sure that we're providing the opportunities and one of the first things that a lot of us do when we see this stuff is realize oh if ripping and malving books and paper is actually a first stage I need to get the books out and I need to make them available for my kid can touch them and explore them because I've protected them I've put the books up because I'm waiting for him to be ready to actually be able to handle them that kind of thing so that's where I find these scales so helpful to help us figure out what are the opportunities that we might not even be providing and how can we do that so I'll share this Kathy I'll just email the latest version to you if anybody wants I think I already have it Aaron from the desert because I used it last week with a district and so I think that would be great but I'd also going to challenge people a little bit if you are using it because it is a drought it would be really valuable for us to collect some information and give it back to Aaron fair enough Aaron absolutely yes very much it it needs to become a lot more concise and I don't recommend making a goal for each item so for example I just did the bridge with the students the other day and what we saw was that in most areas that's how the student interacted with books and handled books he was towards the end of the scale he had really good skills there but he wasn't taking any ownership of literacy experience he wasn't really commenting on the on books on being read to he wasn't going out of his way to read he wasn't he enjoyed being read to but he wasn't initiating stories and so out of these five items that all involve early reading we just picked that one to make it the goal to him initiating and commenting and really taking ownership of the literacy experience so this will continue to change over time and I think I would say a little bit the group here if you're generous enough to share your work I think we could be generous enough to actually give you some feedback so anyway so I perfect all this meaning it's not inclusion if we're not including our kids in the instruction if we're teaching all the other kids how to read and write we need to be doing that with our kids read and write and talk it's not inclusion if we're not including the students in the big ideas so if we're studying pioneer society why do we study that why do we think it's important for Canadian students to learn about pioneer in society or I'm already blanking what they called the Maggie was learning last year about early French Canada why does that matter why do we teach kids about the butterfly life cycle why do we teach them about the Canadian shield there's a reason what's that big idea and we really need to have cognitive clarity around what that big idea is and we need to make sure we're including the students in that because if we're reducing their instruction to point to the mountain point to the river then chances are we've actually not included them in the big ideas for why this really matters it's not inclusion if we don't notice that our students can't participate in what we're asking all the students to do and sometimes I feel like it's the elephant around nobody wants a student with disabilities to stand out by pointing out the fact that here we are we've got all these first graders sitting around in a morning meeting and there's a reading message they're all reading together off of the same sheet they're doing a choral reading and our students can't participate and heaven forbid we actually point that out and problem solve it but look at what we're doing if we don't then we're teaching that student your job is to sit there and watch all the other kids read we're teaching all the students in that class that student is only here to watch you read they're not actually here to be part of it if we don't know how aren't that student can participate in what we're asking all the students to do then that's not our own individual problem we're not going to make that a group problem because it's only inclusion if we're building a community around the student if we're building a community that can support the students so let's ask the kids how can Maggie participate in this activity does anybody have ideas and let's make that our shared challenge to say we're going to include her in this instruction and we're going to get certified at the assistive technology for them to be able to participate it's not inclusion if we don't think that they're potentially literate and can develop the communication skills to be part of it it's not inclusion if we haven't actively removed the barriers to then being able to develop those literate skills finding the technology finding these accessible texts and it's not inclusion if we don't do it to students without disabilities if we're doing something to our kids without disabilities that we don't do and know we shouldn't do to kids without disabilities and it's not inclusion if we do it to our kids and by that I mean everything from just the reductionist way that we so often teach our kids which is just pointing to the answer you know point to the pioneer wagon point to the pioneer if we wouldn't consider that quality assessment for the rest of the kids then it probably isn't for so as we think about things like presence to contribution presence is being physically in the classroom during instruction which means you have to be there when instruction is happening you can't just be there for specials like music and lunchtime obviously you're not going to be able to make a contribution if you're not there having presence means you're observing the instruction you're sitting in the circle this is actually like cheat sheet I made teacher several years ago so that we can have conversations in an IEP meeting about whether Maggie was simply physically present or had presence or was actively participating or was connecting or was contributing if Maggie is actually participating in activities if she's accessing the instruction if she's being read to when everyone's reading if she's writing if she's being expected to participate if she has access to the same tools and additional tools because she has so many more barriers then she's participating and if she's interacting with her classmates during all this and not just sitting with an educational assistant then she's connecting and contributing means we can talk about how it was better because she was there whatever that unique contribution is and sometimes it's just how joyful Maggie is that's the contribution sometimes it's her assistive technology in her classroom this year between my two kids they have I think nine or ten standing refugees who are their classmates because our community has seen a lot of standing refugees and her technology Maggie's assistive technology has become an incredible contribution to this influx of English language learners and all those visual support because Maggie has been really priceless to her classmates and so we have to problem solve those barriers right we have to problem solve the barrier of removing kids from the classroom we need to problem solve the barrier of when we have this little mini classroom happening between an educational assistant or a therapist or a special educator happening in the corner while the rest of instruction is happening with the classroom teacher I mean something I've become really sensitive to is how often are students with disabilities in the classroom and are receiving the explicit message oh don't listen to Mrs. Johnson listen to me don't where other adults are redirecting our students' attention to themselves rather than to the classroom teacher and we're teaching our kids that classroom teacher isn't your teacher it's everybody else's teacher you're just supposed to listen to me so how do we teach all of the adults to support the students' attention to recognize the classroom teacher as their teacher we need to really problem solve that barrier of our educators not having the time and the support and the materials to plan that kind of instruction we need to make sure our kids have proximity to their peers so that here within arms reach again Eric Carter has some amazing research very very specific research about how rarely our students are within proximity both to their classmates as well as to their AAC system and their peers having that kind of proximity to the students AAC system to even learn how to communicate with them and when it comes to contribution the biggest barrier is really lack of imagination lack of engagement and expectation that we need to figure out that vision those high expectations for all of our students and then they have to get shared with our school teams in a way that our school teams can understand how this is possible share begin to share in that vision understand that vision and really support it so that we can really talk about how to make sure all of our kids are contributing so and I can share this as a one page handout as well just from Helen Sanderson so to start wrapping up one of the most important messages BAP, the assistive technology not special education my entire experience in special education has been about how our kids are perceived so different that we need to do a whole bunch of things different and we are going to really put a lot of energy into measuring how different they are and then measuring if they are becoming any less different whereas the field of assistive technology to me has been so much more about how do we create access how do we build a ramp where is the student access point what technology do they need to be able to have access I will throw this out there I don't have a slide for it but if you are trying to think about the difference between AP and specEd there is two cryptos that have been developed recently board makers instructional solutions are completely based on general education instruction and providing that access to the regular curriculum board makers instructional solutions fabulous stuff scripted lessons lessons plans monthly plans daily plans to really help teachers give you that have that time and the resources and the materials to be able to just jump in and really provide access to kids and Don Johnston has a new I have no financial relationship with either of these Don Johnston has a new curriculum coming out called Retopia which takes all their classic literature that they already have in the start to finish library which the classic literature that all kids read that is already being rewritten for start to finish at a grade 2 or grade 3 reading level and is now making it accessible to the most emergent students with really age-neutral, age-respectful adapted texts going all the way to the earliest levels of literacy with kind of almost a graphic novel kind of format so it's really exciting to be at a time when we're getting two where there's now two formal curriculums that are really, really age-neutral respectful of our kids and have that AP focus rather than what is the completely separate special education curriculum we're going to use. As we're thinking about our kids don't just ask what that student needs but ask who needs them who needs Maggie, who needs all of our sons and daughters. This is a picture of Maggie's grade 6 classroom and because it's Maggie's IEP that she has to have visual support because she's very, even though she's low vision she's very visual. It's much easier for her to process visually than to process language auditorially. So because of that her classroom had the highest rate of kids with IEP that had a 40% IEP rate and yet was one of the most quiet and disciplined classes in the building because her teacher had so many visual supports and you can see the whiteboard. She kept literally just a dollar store whiteboard with a whiteboard marker under a document camera at the front of the class and just provided those visuals for every instruction she gave the kids. She was reading a book, she had the book under the document camera and was using her finger to follow along. Every kid had those visuals. Maggie always has an iPad mounted in front of her so whatever is happening can be recorded whatever is happening in the classroom or can be magnified so that she can see it because she can't see across the room but she can see as far as her iPad seems so anything that's happening can be broadcast. And because of Maggie's auditory processing issues her classroom teacher had to use a voice amplifier which we found enhanced the attention of all of the kids who are otherwise struggling. So that's just one contribution Maggie made to her class but asked who needs Maggie who needs to be in a classroom with Maggie these days we ask who are the English language learners who need to be in a classroom with Maggie because everything we're doing with Maggie is actually really supportive of those kids too. Everything I see is that the world needs Maggie. It's been very clear to me that middle school needs Maggie. Middle school has needed really authentic joyful girls to help change that culture. I saw a very mean culture in my own middle school and I've seen a very mean culture, mean girl culture in Maggie's middle school and over and over and over again we see that there are so many girls who need Maggie who need her honesty, who need her acceptance who need her authenticity and that permission to be children for a little while longer rather than this pressure to act 25 when you're 14. Maggie makes enormous contributions. I've written an entire book chapter about it. It got published and everything. Whether it's from how she accepts help, how she requests help or how she declines help, just her irreverence her buoyancy, her resilience her self-acceptance. She's a kid who regularly sort of breaks those little social norm rules. She's incredibly uninhibited and she's very honest. She is a nonviolent protestor but she protests. And all of these things have just been so important. It's really been interesting to me throughout Maggie's whole life to see how it's not you, it's you, not her. If one of her friends is really moody or mean-spirited or just doing something, Maggie has a way of watching without assuming it's about herself and that it's any reflection on her. And I'm just fascinated by that and want to make sure that we really preserve it because for goodness sake, if you spend any time on social media, you know, we all need to learn how to understand that someone else's behavior is about them and not us and not take it personally. And the most important message for me is just that Maggie is included because her classmates need her there because she is preparing all of them for life. Robert Saylor and Arnaldo Rios are two examples, two out of far too many of what happened to a society where everyone else was educated in a segregated environment and did not learn how to interpret and be with and understand and support people with a developmental disability. Robert Saylor died after attending a movie and a movie theater. He wanted to stay and watch his second viewing. His support worker didn't have enough money to buy a second movie ticket to be able to stay. She's trying to contact his mother to get more money. The theater manager, the theater employees and the mall security had no way to understand him other than he must be a criminal because he wants to stay and he's refusing to leave a movie theater and he actually died in police custody from the way that they restrained him. Had they been educated with Maggie, they would have had a framework to understand challenging behavior as something other than that. Arnaldo Rios is an infamous example in Florida where his black caregiver was shot by police. Arnaldo is a large Hispanic man holding a toy truck and he was perceived as really aggressive and threatening. He was upset about something. He was holding his truck to comfort himself. He was upset about something. His support worker was with him. But members of the general public who had been educated and segregated environments and did not have any other way of viewing someone with a developmental disability not only perceived him as a threat but assumed that his truck was actually a gun instead there was essentially an angry Hispanic man with a gun. The police came and they were aiming for Arnaldo and they actually shot his caregiver. These are the worst case examples of what happened when we have a segregated society and we're not learning how to support each other. But there's many others. Whatever Maggie's classmates go on to do whether they become prime minister or mayor or go to work in a movie theater or become journalists or professors or employers or therapists or teachers or principals or supervisors, they will do that job different because they were educated with Maggie. If one of them goes on one day to become a doctor and has to give a diagnosis like Angelman Syndrome, I believe they will give it differently because they were educated with Maggie. Because instead of making all those assumptions that they make, that we all make if we've never known someone with a disability or a different frame of reference. So Maggie is included because all these people need to learn how to do their jobs better in order to build this society that we know we can build and we'll do it different because our kids are included. We'll do those jobs different. And we're all aging. We're all going to have diseases. We're all going to have accidents. Some of us are going to develop Alzheimer's. Some of us will develop depression. We're going to have a whole bunch of different things that will go on to have so many different roles that they'll fill. They'll become grandparents. They'll be lovers. They'll be partners. They'll be spouses. They'll be parents. Their experience of life will be different because they were included with Maggie. If one of Maggie's classmates sat down one day and told we're sorry but your child has a significant disability, they will have a different frame of reference than I had if they were educated alongside students with disabilities. If they're a medical principal and they're told you have a student coming with significant disabilities, they'll have a different frame of reference. If their lover or partner or spouse experiences an accident or Alzheimer's developed dementia, any kind of cognitive decline, they'll have a different frame of reference for what that means and how it's going to impact life than if they never did, if they never had any kind of exposure to it. And so how we support Maggie and students like her in the regular classroom is also how we're teaching all those other kids the meaning of disability, the meaning of cognitive disability, the meaning of infirmity and the meaning of help because we're only going to have a society that we all want to live in age in if we can change how people understand help. And if from the time kids are in kindergarten, if they're learning that help is something that each one of us deserves for our own inherent dignity and that we each have the right to direct the help that we get. So we each have the right to reject help that we're offered and we each have the right to request help on our own terms because we are so valued because we are being helped so that we can participate with everyone else. If we all learn that help means that from the time that we're in kindergarten, then imagine how we are going to experience and understand and perceive a need for help when we're 90 years old, when we're 80 years old after a major car accident in the wake of a disease. We can change this because a few years ago a few years ago Canadians were surveyed about under what conditions they would consider assisted suicide and women with children had the highest rate of saying they would consider assisted suicide if it meant that their children would have to care for them because women with children were that afraid of ever becoming a burden on their children. We have created a society, we currently live in a society where help, where personal needs, personal care is so shameful, where requiring help is such a source of shame that we think our children and grandchildren are better off with us dead than helping us, than caring for us. And to me this is what inclusion means is that we're going to teach a new curriculum about what that means, but instead of thinking of help as something that's an act of charity, it's an act of solidarity because we so value your contribution that we'll do whatever it takes to help you. So I'm going to skip through some of this stuff because I think we're just going to go back to slides. Kathy, we can't see your slides right now. Oh, you can't? You probably have to hit share screen again. It dropped off for some reason, so. Oh, that's all right. But if you hear it, it'll come back. Okay. All right. Are you doing that? I just want to say my hair is standing up on the back of my neck again. So anyway, continue on, my dear. All right. Well, we're almost done. So just know this. If you're a parent, just know the world needs our husband and daughter. It needs them as they are, exactly as they are, the world needs to learn how to support them because it will make the world a better place. If you're a teacher, trust that you don't have to fix your students. Trust that they have a contribution to make exactly as they are. That our job as educators is to create that opportunity. Make sure that they're having access to opportunity and to experience and to access to creating a community that can support them so that they can in turn make the change that I think we can make in our society that we're already doing for the person with disabilities. It's not a game of musical chairs where we just need to add a wheelchair into the mix. It's not about asking how to solve the problem of including that person with disability. That's not what inclusion is. Inclusion is about realizing that the problem is that the absence is that our neighbors with disabilities haven't been there. And therefore, we don't even know what contribution they can make. Inclusion is about removing that absence. It's about realizing that the absence of people with disabilities is the problem. And what we're doing is trying to correct that problem by learning how to create a society that includes our folks. So it's about improving what we're doing by including all people and making sure that each person's contribution is visible and can be valued and acknowledged. And that's it. I always end my presentations with this because I know it can be a lot. It can feel overwhelming, but you don't have to do everything at once. If it's a 50-year plan, just figure out the first step. Just figure out what it is we need to do right now just to take that first step. Okay. And I say, Kathy. Bravo, my darling. Bravo. When I hear her talk, I kind of get a little bit ... I get emotional, actually. But tonight the thing, Erin, that popped up for me, and maybe I'll let other people think about what might have popped up for them. But tonight what popped up for me in a way that I hadn't quite thought about it before, although I've talked about my high school yearbook being vanilla. Is that I was educated in a segregated classroom. I was segregated from other people from whom I could have learned, from whom I could have gained a rich in my understanding of humanity, from who I could have gained things that Maggie has is teaching her friends. My kids have been segregated from the kids that I've worked with for most of my life. And while I gave them intermittent exposure and intermittent participation, it was not an inclusive environment. So I think you've given me, as you always do, much to think about. And I hope you've given all of us who are most concerned about kids whose voices are often silenced, whose participation is often limited or only given through their proving that they are worthy much to think about and take away and chew on. So I see lots of people saying, thank you. Again, Erin, magnificent. I'm going to stop for a minute and see if there's anyone else that wants to take the mic and ask a question.