AASR Live

Lived Perspective: Every student's right to access effective communication with Jordyn Zimmerman

March 26, 2023 The Alliance Against Seclusion and Restraint Season 4 Episode 7
AASR Live
Lived Perspective: Every student's right to access effective communication with Jordyn Zimmerman
Show Notes Transcript

Join us for a special interview with Jordyn Zimmerman. Jordyn will share her lived experiences as a nonspeaking autistic student who was denied effective communication and inclusive education. We will discuss Jordyn's experiences with school, as well as her experience with restraint and seclusion.

We'll talk about augmented alternative communication (AAC) and how AAC impacted her life.

Jordyn Zimmerman, M.Ed., obtained her bachelor's degree in Education Policy from Ohio University and her Masters of Education at Boston College. As a nonspeaking autistic student who was denied access to effective augmentative communication until she was 18, Jordyn has personal experience challenging the educational status quo, which is featured in the 2021 documentary, This Is Not About Me. Jordyn presently serves on the board of CommunicationFIRST, works as Director of Professional Development at The Nora Project, and is a current presidential appointee.

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Guy Stephens:

Well hello and welcome to ASR Live. My name is Guy Stevens, I'm the executive director of the alliance against seclusion and restraint. Really happy to have you here with us today, you might notice that I am in a different place than usual, which happens from time to time, as we schedule events, and then sometimes I'm traveling or doing something else. Today is one of those days I have been in Pennsylvania this morning, and had a great opportunity to present to some amazing parents and educators and advocates, talking about how many times children are misunderstood in the name of behavior. Really great opportunity. Of course, we are here today for our usual live event. If you're familiar with the Alliance, of course, we are here to raise awareness and promote change. We want to really influence a change in policy of change and practice, around things that are often in happening to individuals very often the name of behavior, when it comes to schools, it's restraint, seclusion, suspension, expulsion, corporal punishment, you know, and in some settings, it's different things. But really, what we want to do is raise awareness and promote change, we want to ultimately hopefully, have a hand in being part of the work to really create a safer world a better world. And one that, you know, we don't have the kinds of experiences that so many of us had had either as parents or as children or adults. So at any rate, really excited to have you here today. And I tell you every week, well, every other week, I guess it is how excited I am about the guests we have and today, of course is no exception. Really excited to have with us today, Jordan Zimmerman joining us really for a special interview and discussion, Jordan is going to share about her lived experiences as a non speaking autistic student. And now an adult who was denied effective communication and inclusive education, and unfortunately, also experienced restraint and seclusion. And we'll tell you more about Jordan here in a moment. But I do want to let you know that today's session is being recorded, as always. So we record these events, and they are available on right now live on Facebook, YouTube and LinkedIn, you are also able to go back in time and watch them on those same platforms. We also make it available as an audio podcast. And you can listen to that on iTunes or Spotify, or wherever you listen to podcasts. We're also now working to make the transcripts available, and trying to do more to make this show as accessible as we can. So with that said, it is time for me to get to the exciting part. But before I do, I just want to encourage you if you're already online, watching us live, let me know in the chat, or let us know in the chat, who you are and where you're from. It's always great to see you know who people are, where they're coming to us from. And I will often see a lot of familiar faces. So let us know who you are and where you're from in the chat. And with that, let me get to really why you're here which is going to be to meet our guests. So as I mentioned, we have today with us Jordan Zimmerman, Jordan earned her bachelor's degree in education policy from Ohio University, and her master's of education at Boston College, as a non speaking autistic student, you know, was denied access to effective augmented communication until she was 18. Jordan had personal experience, personally experience really challenging situations in the educational system, which were featured in the documentary in 2021. I shared this recently on our social media. But there's a fantastic documentary called this is not about me, which really talks about the struggles and successes that Jordan has had. Jordan is doing some really amazing things and currently serves on the board of communication first, also works with the Nora project, and isn't a current presidential appointee. So Jordan, welcome. And thank you so much for joining us today. I am beyond excited to have you here and part of the show.

Unknown:

Thanks for having me, guy.

Guy Stephens:

And I will mention Jordan. I had sent Jordan ahead of time some of the questions for the interview. Unfortunately, not really as far ahead of time as I had planned and I apologize the Jordan. So Jordan has gone through and taken time to kind of get the responses typed out in her AC for some of the questions, but other times we'll need time to enter her response her answer, and is George Then let me know two things. One, she let me know if for some reason the audio is a problem for anybody, or begins to not sound the way it should. She asked me to let her know. But also, you know, when Jordans looking down, she's probably working on a response. Jordans also agreed to take some questions from our live audience. And we'll get to some of that, of course, you guys all know how this works. I have a lot of questions first, and I don't mean to monopolize the questions, but it's gives us a place to start. So before we get started with the the questions I'll just mention to you again, let us know in the chat who you are and where you're from. Georgia and I'll share with you a couple of people have already introduced themselves. We have Kyla from Orlando, Florida. We have Michelle who is in Nebraska, we have acorns with whiskers, I like that acorns with whiskers. Andy from St. Paul, Minnesota. We have Diane here as well. We have Angie and I happen to know Andrews in Maryland, or maybe in Maryland. We have Lisa, we have a number of people that are joining us. I've got somebody here from St. Lucie County, Florida, 20 year old son, a 22 year old son with Down Syndrome who was restrained, oh gosh, from the time I was made aware in 2010, and 2011. We also have here with us Cass Bennett, from Washington State. I'm here because Jordan is the reason we started high tech AC and then our two, two year old a year ago, and it's changed our whole lives. This is not about me, it's such an amazing resource. I love to connect with other parents of young AAC users. So before we even gotten started here, Jordan, we already know that you are doing things to really make a positive change for you know, autistic individuals, for families for so many others. You know, but it's also been a tough journey. And we're going to talk a bit about that journey today. And, you know, we'll let people know that, you know, part of this part of this is hard. Jordan, Jordan had a, some difficult experiences. And some of this may be hard to hear. But we want to we want to talk about, you know, we want to talk a little bit about that. So with all that said, you know, again, I'm sure we'll have more people introduce themselves. Jordan, I'm gonna go ahead and start sending some questions to you. And we'll start the conversation. So I want to start out here, when you started school as a child, my understanding is you were really eager, eager to learn. But early on, you know, one of the things that happened was the same thing that happens to many kids. You were segregated from other children. What do you remember about the early years of school kind of going from somebody that was really eager to suddenly being separated from from other children?

Jordyn Zimmerman:

Thanks for that question. I remember when I started school, I had an aide from day one. I know this because it's memorable for me. But I also think it's important in terms of how it all played out. That person, at no fault of their own, didn't facilitate my inclusion and belonging didn't ensure I had access to effective communication, and didn't advocate for challenging instruction. They were there to ensure my safety and compliance. However, that was all defined in the moment. It's interesting to think back on that now, and how it could have been different, and how it could be different for so many students, I often hear about this still being a common scenario, and big emphasis on safety remains the same. However, communication is such a big part of safety. So it's a bit of a twisted idea.

Guy Stephens:

Thanks for that answer. And you're absolutely right. You know, I can tell you, you know, kind of having a community here of, of, you know, parents and self advocates and educators and others, there are many things that are done to people in the name of safety in the name of behavior. And of course, when you're not able to, you're not able to feel safe when you're not able to connect and communicate. And if all of it is faced, you know, kind of focused on you know, managing, you know, ensuring compliance, it's the wrong goal. And unfortunately, you know, that often leads to things like you experience like segregation. So, you know, things started off in a difficult place for you. And of course, as you continue to, you know, move into middle school, things were difficult. People often saw you for your behavior and not the person that you were and you know, as you mentioned, this sadly still happens for many children today. So, you know, do you have thoughts on on, you know, at I'm sure that you do on, you know how we make that shift and get people to look beyond behavior. And I'm really, you know, your answer to the last question was very gracious in terms of, you know, not assigning blame or fault but saying, you know that, that we need to do better. And you know, I'm curious if you can talk a little bit about that kind of that middle school experience, and then what we can do to help people to look beyond behavior?

Unknown:

I think there's a couple things that happened in middle school. First, as gross as it may seem, I was no longer an enchanting little kid. And secondly, I wasn't lazy to physically move around anymore. Those are two things that are important for people to think about and reflect on in terms of how my experience got worse in middle school. But for how we get people to think beyond behavior, we have to reframe how we think about behavior, how we think about supports and inclusion, and we value with that last part being really important.

Guy Stephens:

Absolutely, absolutely. You know, we spend a lot of time here at the Alliance, kind of talking about the importance of, you know, reframing and the importance of understanding some of the things that we know today that maybe we haven't always known, but I am often taken to a quote by Dr. Stuart Shanker. And Dr. Stuart Shanker with some great books, one of which was called self reg. And Dr. Shankar has this, this quote that I love, which is that if you see a child differently, you see a different child, often, it's the way the adult sees a person or sees a child. And as you experience, you know, kids are sometimes even dehumanized. You know, and under, you know, I remember from watching the film, and we'll talk about that in a minute. But I remember, you know, you talking about the things that you were being tasked to do. And of course, you have all all these ideas and thoughts that you're unable to communicate, and how difficult and demeaning and that experiences. So I appreciate your thoughts on that. And I agree with you that we really do need to not only look at things differently and change our lens, but I think even beyond that, you know, we've learned a lot about the brain and the way the brain works. And we've learned a lot about, you know, what trauma looks like. And, you know, I would imagine that your, your schooling was traumatic and have often kind of imagined that, you know, if you're not speaking in a world that doesn't understand you, I can imagine that's very difficult. And at times, just incredibly frustrating. I mean, is that and I know I'm a little off script here, but I mean, is that is that a feeling that you had when you would just had things that communicate and have things to say, but we're unable to do it without the ability to use your voice?

Unknown:

So there's two parts to that. I always say that school was the cause of so much trauma, but also ultimately, the cure to so much trauma, because I needed to be there. And I needed people to understand my right to be there with the communication, or the lack of a reliable method of communication, anytime without communication is traumatic, especially when it's layered by another traumatizing experience.

Guy Stephens:

Yeah, absolutely, absolutely. I can imagine how, how challenging that must have been. And of course, not been able to be sometimes heard or understood. When people were only looking at behavior. There were times that that led to things like, and it's my understanding that you experienced physical restraint and seclusion in schools. Can you tell us a little bit about your experience? And again, I realized this is something that is probably difficult memory and want to be mindful of that. But can you share a little bit about your experience?

Unknown:

That is right. My experiences have really included everything from padded seclusion rooms, to being held down or restrained with the use of handcuffs. There were days when I was physically restrained 10 or 20 times within one day, and we'd have bruises all over my body a few days later.

Guy Stephens:

And Jordan, you know, I'm really sorry that that was something that you would this something that was done to you and something that you experience? You know, I started the Alliance, because I have a son who's neurodivergent, who was restrained and secluded, and I know how traumatic it was for my son. Since starting the Alliance, you know, I've talked to hundreds and hundreds of parents and families and individuals. And these things are really difficult and traumatic. How do you think, you know what, looking back? And what were some of the reasons why, you know, you ended up being restrained or secluded at school?

Unknown:

I'm sure this question could be answered in many different ways, such as my safety or well being, but I think are many of the reasons center on my worth, or lack thereof, comparative to the worth of other students.

Guy Stephens:

Hmm. Yeah. And of course, that's what we often hear is the idea around safety. But But I agree with you, and you look at the data, the data is really overwhelming that, you know, 80% of restraints nationally are kids with disabilities 77% of seclusions. You look at autistic individuals, and you know, they often make up half of those numbers. You know, and it really is, I mean, to me, I look at those numbers and I think this just this is a sign that we're failing people This is a sign that we're not appropriately meeting people's needs. But even today, you know, many years later pass your experience pass my son's experience these things continue to happen. How do you think that you know, the the experience that you had with restraint and seclusion? How do you think that impacted you?

Unknown:

In the moment, it was always really traumatic. Some people think that restraint will help a student become reregulated. And that's just not the case. Imagine being forcefully held down against your will when you are at your most dysregulated state. That's just not how we help other humans. But in terms of how it's impacted me, it's affected every part of my life, especially because I didn't even have the reliable communication to tell people that this was happening in the moment. So I had this huge buildup of trauma, not only from not being able to share, but from how I was being treated by people who are supposed to be supporting my needs.

Guy Stephens:

Yeah, and that's so important. People that are there to support your needs, but ultimately people that you should feel safe around. And you know, once you go hands on with anyone, once you restrain or seclude, someone, you know, that person that this was done to is not going to feel safe. And safety is so critical to everything else. I mean, safety is critical to learning. You know, we don't we can't learn or our prefrontal cortex, the thinking part of our brain goes offline, you know, if we don't feel safe, and, you know, so many of these things that are done done to people really lead to feeling unsafe and not being able to, to learn and, you know, obviously, you're in school there to learn. And of course, we know from the data that autistic individuals are far more likely to be restrained and secluded in schools, we often see nonspeaking individuals more likely to be restrained and secluded in schools. And of course, you had this experience, but you've also now have experience working with organizations, you have degrees in education. So I'm interested in your ideas or your thoughts on how do we how do we stop these things? I mean, you know, at the Alliance, we're of course, taking an approach to try to influence legislative changes in laws and policies, we're trying to get people aware of the things they should be doing instead, but give me your your take both as somebody that has had this experience, but also as somebody that has this knowledge from your, your college and your background. What do you think we can do to lead to a change here? And I just want to remind people, feel free to jump in the chat and tell us who you are and where you're from. I see a number of comments here. Good to see some familiar faces. Always great to have you here.

Unknown:

These are some million dollar questions. But so often, when students who cannot rely on speech to communicate begin school, they are placed on a path of segregation and limited education. When a student is four years old, a team is making decisions to segregate that student, which forever impact the trajectory of their life. And there is also a belief that students who cannot rely on speech to communicate to have an intellectual disability. And while nothing is wrong with having an intellectual disability, we shouldn't make these automatic assumptions based on biases or misguided information. So to improve school, we need to interrogate the system and how it works. We can't keep saying yes to things we know are causing harm.

Guy Stephens:

I agree with you 1,000%. That's a fantastic answer. And, you know, I saw a post on Facebook, from a colleague today and it was talking about words for resilience. And one of the things that popped in my mind was, this isn't just about resilience is about not doing harm, right? You know, rather than harming and then figuring out how to how to help people be resilient. What if we can do more to to stop harm upstream and to change systems. I want to take a moment, Jordan, we've got some great things happening here in the chat. So I want to take a moment and address a couple of things here. First, I have from acorns with whiskers, who I mentioned before, they love the name and I love the picture their fellow survivor of seclusion and restraint here, many thanks to Jordan for sharing about your experiences in prepping to share publicly my own experiences too. And, you know, I'll just say to you that I'm really sorry to hear about your experience. These are things that we're working really hard to stop because these things that were done to you these things that we're doing the Jordan these things that were done to my son shouldn't have happened in the first place and shouldn't continue to happen. And also let you know at some point, you know, if you want to share your story, feel free to reach out. We'd be happy to talk to you and help in that process. If we can have a comment here from Cass Bennett. Cat said the single biggest effect, high tech AAC had on our lives is the dramatic increase in our three year olds emotional regulation, because she feels safer knowing she can be understood. I wish robust AAC were made available ASAP to toddlers, we started at age two. And I would say that you're even fortunate because we, you know, in Georgia, I'm curious what you think about this. But, you know, I've certainly heard a lot of stories about schools, professionals that want to withhold AAC because they feel somehow that if they bring bring a child AAC, that it will inhibit speech. And for years, sometimes children are on a path when they're not getting help and not having a voice. And I know this is not one of our questions, but do you have any thoughts on that? Michelle, that's an important point here communication absolutely is the right.

Unknown:

Yeah, that's just not true. There are no prerequisites to yc. And there are no reasons to wait for a quote unquote, good time, the best time to start his now.

Guy Stephens:

Yeah, that's a great answer. You know, we had interviewed at one point, Mike Hipple, and Mike is an AAC user in Wisconsin, who is part of an organization there. And Mike was kind of talking about, you know, how, in his view, you know, getting people a C, getting people a voice, you know, when people focus on behavior, you know, when you're providing people with ability and a voice, you know, and I'm paraphrasing, so I'm gonna get Mike's words exactly right here. But, you know, essentially, that's a way to, to help reduce behaviors, when people have a voice, people have an ability to speak and share their, their thoughts and feelings. So that's a great point. So I want to move forward into high school. And I remember, in watching the film you describing being in high school and being you know, kind of tasks, these simple tasks, you know, like stacking quarters and earning candy for these these tasks. And, of course, I'm not a big proponent for a lot of the kind of reward and consequence driven programs. But the behavioral driven approaches are, you know, pretty common in school. And, you know, you kind of said, you know, these things weren't helping you. And I don't think they really help a lot of kids today. How do we shift people away from these compliance based approaches that are really failing and a lot of our kids? Brian, oh, thank you for your point. Ups, okay, hold on, let me that you're right. We're often very reactive instead of proactive.

Unknown:

Yes, that was sometimes separate, but also part of the restraint and seclusion cycle, myself, and students who are still in the system are often restrained or secluded, and then given these super basic tasks to test our compliance, and often it causes more escalation and mistrust and perpetuates the trauma we experience.

Guy Stephens:

Absolutely. And, you know, I can tell you from experience of talking to a lot of individuals, a lot of families, you know, very often even the positive rewards are often the thing that's catalysts for kids that are having a difficult time you know, it's not a matter of just getting somebody to follow your orders. It's a matter of helping people develop skills ability have the voice to express themselves What a fantastic answer. So you know, we're in high school and you mentioned that it wasn't until you know, you were quite a bit older that you began to get a voice and let's talk about that you know, when did things until you're 18 you didn't have access to effective communication. So when did things change for you? Can you tell us a little bit about that in a positive way?

Unknown:

Okay After I gained access to effective and reliable communication through iPad, things slowly started to change for me, my mom found a public school serving autistic students within a larger district. And that helped me in the moment, as I was able to become more proficient on my iPad. iPad was only one tool, though, and it didn't immediately fix everything. For those of us who are non speaking, I think there's misunderstandings or misconceptions about our actions, and therefore, how we are then perceived. Just as an example, I would crash my body into walls, or hit my head repeatedly, all too soon with my need for pressure. But it wasn't understood as that. However, now I could more readily communicate that I had this need for deep pressure. And I had a team of people who would squeeze my head in a way that provided the same input. So that quote, unquote, behavior was no longer viewed in the same way. Still, my local public school was pretty adamant in saying they couldn't support my needs. But after spending a year at this new school within the new district, they became committed to supporting me. So I transitioned to a public high school an hour away, which I wrote to each day. And to be clear, it wasn't easy by any means. When I started at this high school, I had never been meaningfully included in challenging academic classes. So this was the first time I had a lot of moments of frustration and dysregulation, where I would run out of the building, grab people, or express frustration in other ways. But it was also during those moments where I'd have a team to support me who were committed to my success as a student, and as a human. And as I was intentionally provided supports, and included within the school community, things shifted. However, I also want to say that students should not have to have access to effective communication before being included are before recognizing that restraint and seclusion is not okay.

Guy Stephens:

Yeah, absolutely. Absolutely. And, you know, I mean, what, what a, you know, amazing, you know, change began to happen when you began to get effective communication and the right kind of support. And, of course, you know, you went on, eventually to college. You know, so, after not being included in a meaningful way, after not having a voice, you know, you were able to make tremendous progress and, you know, then move on to college. Can you tell me a little bit about your experience in college and, and, you know, because I'm sure the challenges weren't over at that point. You know, what were some of the challenges and what helped you to be successful in college

Unknown:

College was both beautiful and beautifully challenging. I have the opportunity to live in the residence hall started an inclusive cheerleading team and enjoy all the various parts of college life. I think I had ice cream every day, my first year, which was pretty marvelous. But in addition to autism, I have epilepsy. And there were some moments where my seizures were more frequent. One thing that became super apparent was how people don't know how to interact with someone who needs support on a college campus. There were times when I would have a seizure. And I would come to and everyone would be trying to get me to communicate, but I needed some time, I would become dysregulated in the go to was to restrain me. I think this was also due in part to a lot of people trying to work together. And the message is not always getting relayed. However, I was really fortunate that disability rights Ohio was involved in willing to advocate for my right to effective communication, my right to be free from restraint and seclusion, especially when I was post tactile and my right to accommodations across the college campus.

Guy Stephens:

Wow. Well, you know, the I remember when I, when I shared with you these questions, you mark in this question, and it's really important, I think, sometimes people make the assumption that you know, okay, well, you've got out of school, and you're going on to college and, and everything's just fine now, right? The world, the world is gonna be fine, and the world's gonna be better. But there continue to be challenges. So I'm really excited to hear that disability rights Ohio work to work with you. Am I correctly? Did you do an internship at one point within DRM, the National Disability Rights Network? For some reason I have in my head that somebody had shared that with me. Yes, okay. Which of course, nd Rn is kind of the kind of the parent to all these, whether called PNAS or protection and advocacy organizations across the country, and it may be Disability Rights blanket may have a different name. But these organizations really provide a lot of help and support for individuals with disabilities and are often involved in efforts around restraint, seclusion, I've worked with disability rights, Maryland here in the state of Maryland. And currently, I'm working with some folks from Disability Rights Washington and Washington state. So great organization, really appreciate your your answer there. But I want to share with you a couple things. Occasionally, as you've been putting answers, and I've shared a couple of the comments here on the screen. And then I realized that these are things I need to share with you, Jordan, people that are just responding and saying, you know, this is amazing. And I agree. And Jennifer, I might, I might even tweak that a little bit and just say, Jordan, you're amazing, you know, kind of the insights that you're sharing with us are really valuable. And you know, and I will say and I think there's a comment later that gets to, you know, the the message that you bring forward and the way that you're doing it, you know, provides probably a lot of hope for families. And, you know, I think we're always hoping and at least you know, this is kind of how I frame things that you know, our experiences while sometimes really difficult and unpleasant. If somebody can benefit from that in some way. It's a good thing. And I think your story is definitely helping Nicole who I believe is in New Jersey, so this interview was invaluable to our world. You know, thank you for doing this. Chantelle, who was a volunteer of the alliance in Canada said my daughter is unable to tell us why she's sad for the first time in her life recently, because of a See, I can't even tell I can't even explain to you what that means to me and what that means for her. So I just wanted to share some of these comments. Jennifer said, Jordan, you're giving so many families and individuals a huge gift, the gift of hope so many had this taken away from them, starting with diagnoses. But your story is inspiring and shares why as caregivers, we won't give up on our kids. Yeah, so a lot of really positive comments coming in here. And I do want to let people know if you have questions, go ahead and put them in the chat. I haven't got a couple more questions that I want to ask. But we'll try to get to some other questions as well. Michelle said, Jordan, I'm contemplating helping my son who is 16 testify about his experience with seclusion and restraint at Fairview February February school. What are your opinions about that? Do you think it's too traumatic? To Do you have any opinions about somebody testifying about their own experience? At 16?

Unknown:

I would ask the person how they feel about it. I think that's always really important.

Guy Stephens:

Yeah, absolutely. You know, as a parent, my son who has had the experience, you know, I now make sure I have his permission to share the experience. And he has, you know, I've made the, you know, offer to him at times if he wanted to get involved or testify. But I think it's really important, I think, you know, even for us to tell our child's story. It's not, you know, part of it, maybe our story. But I think we should always ask for consent to share a story. And, you know, I know my son is a couple of times said that he wanted to help with things and he's written actually short pieces of testimony. But that's always that's always on his own. That's always his own decision. I think that's really important. I have a couple more questions here. And I could probably go on talking to you for quite some time. But tell me a little bit about the documentary. So in 2021, there was a documentary This is not about me. And of course you were featured in that documentary. Can you tell us a little bit about the film and kind of how that came to be?

Unknown:

Yeah, the film chronicles some of my story and experiences, but it is also the story of so many other students, as you recognize, and so many others will, my story is quite common. And so it's filmed in a way that allows viewers to reflect empathy and come to their own conclusions on the systemic change that needs to occur.

Guy Stephens:

Did you have a lot of people reach out to you after the film, I can imagine that it really resonated with a lot of people that you have a lot of people reach out to you.

Unknown:

Yes, folks who work within the system are constantly reaching out and sharing how they're changing their practices. But also, families reach out to share the impact the film has on young students, which is just so meaningful to me.

Guy Stephens:

Hey, Jordan, the audio just did that little trick word is acting funky. So I don't know if it's something that just needs to be unplugged and replugged in.

Unknown:

Yes, folks who work within the system are constantly reaching out and sharing how they're changing their practices. But also, families reach out to share the impact the film has on young students, which is just so meaningful to me.

Guy Stephens:

Thanks, and the audio sounds perfect again, I've got a couple more questions that I know I have to stop asking questions. But there's a lot of I love being able to, you know, kind of hear your experience and really benefit from you know, benefit from your wisdom. I'm gonna combine a couple questions here and I'm gonna simplify but how do we make the world a better place for non speaking individuals? How do we what can we do to make make the world a better place? And I did put The link to the documentary in the chat. Somebody asked about that. So you can find it, I think you can rent it I think it's about $6 or so to rent the film.

Unknown:

My mom says this in the film, and it's so true. People decide who someone is going to be at a super young age. And that's the problem. We have to stop doing that. We have to provide services and support to people and that limit potential with decisions that impact their life trajectory. We don't know who someone is going to become.

Guy Stephens:

Yeah, what a great point. And you're absolutely right. I mean, we we've got to stop making our mind up and judging people because when we do we close the door. That was a great comment. So we have a cast has actually asked a question what's kind of next on my list? Which is, you know, do you have any advice for parents of non speaking autistic kids, kids that maybe are having a difficult time?

Unknown:

Presume competence in your child, ask questions, if something doesn't seem right, keep records and advocate for more. Every student is valuable and every student deserves to be treated with dignity and respect.

Guy Stephens:

Yeah, absolutely. Absolutely. Great answer. So I have I have two more questions. One is I understand that you serve as the board chair for communication first, which is an organization that I think is absolutely amazing. The work that they're doing, we've actually collaborated with communication reverse on a couple of things. Can you tell us a little bit more about communication first and your role within the organization?

Unknown:

Yeah, I'm Board Chair of communication first, which is certainly an amazing organization. We are the only national nonprofit dedicated to advancing and protecting the rights of the estimated 5 million children and adults who cannot rely on speech to be heard or understood. Some of the things communication first works on include ensuring access to robust communication tools, improving self determination and issues around supported decision making, and more. So many important things.

Guy Stephens:

Absolutely. Fantastic organization. I just shared the link in the chat as well. Certainly encourage people to check it out. So my my final question for you. And then I have got one question. I know we're about to the hour over the PowerPoint. So we'll wrap this up here shortly. But my final question for you is what's next for you, Jordan? I mean, what are your goals? And what are your dreams? You know, today? And where are you hoping to go? Next them? And I asked that, under the guise of I'm a firm believer that life is always evolving. I never expected four years ago for me to you know, leave my job and focus my life on work to make a change for people. So our lives are always unfolding. But But what is it? What are you what are your dreams and hopes?

Unknown:

I don't know. But when I know, I'll be sure to tell you.

Guy Stephens:

A fair enough. You know, I don't know that. I know, either. So maybe maybe it's a tough question. But I know whatever you do, you know that that you will just do amazing things and have been excited about the work that I've seen you do with other organizations, and the change that you're helping to bring about. So let me ask one or two more questions here from the audience. I saw one or two things I wanted to try to get to here. And here was one which was from Lisa, Lisa said, What's your advice? What advice would you give to a non speaker speller who wants to finish everyone's education high school, get a diploma and go to college, but most importantly, wants to be an advocate for others trapped in the silent cage.

Unknown:

I would say share your story amongst the community to help others. I wish someone would have told me I wasn't alone, and that things could get better when supported in the right ways.

Guy Stephens:

Yeah, great point. You know, when we started the Alliance four years ago, the initial goal that I had was that people were they were going through this, I wanted them to know that they weren't alone, and that they could influence change. And I think there's so much power with connection and knowing that you're not alone. One final question, and then we will wrap up here. Chantelle ask, I would love to know which AAC software you use, and what you think about adding phrases for buttons as opposed to just single words, I'm beginning to learn about Gestalt language processing.

Unknown:

Right I use for local and for text, it always depends on the person, but I think access to the alphabet is really important.

Guy Stephens:

Okay, great. So, Jordan, I want to wrap this up. And I've got to tell you, I interview a lot of people over the last three years that we've been doing the show and, and I really felt this interview, you know, kind of in my heart and in my soul, you sharing your story, the work that you're doing, to really bring about positive change the the voice that you bring to it, I really appreciate all that you're doing. You know, you're an amazing human, and really appreciate all that you're doing to you know, hopefully make the world a better place for others. And you know, it's absolutely incredible and I want to ask those of you that are watching you know, to put your your thanks in the chat. But, you know, Jordan just wanted to give you a huge you know, thanks for being here and for sharing your story and for doing what you do want to give you an opportunity if you have any final words or anything you'd like to share with us as we wind up. But I can assure you that this has been time well spent for those that have been watching or will come back and watch later. I'm so important to hear the voice of lived experience to hear your experience and story. So I'll let you have the final word if you have anything else you'd like to share.

Unknown:

Thank you so much for having me and allowing me to share. I hope we can all continue moving systems forward together.

Guy Stephens:

Absolutely. And I'll have to tell you, and you might be hearing from me again. But as I listened to you, I thought, Oh gee, maybe there's some more opportunities to work together and collaborate and I'd love to do that. I do want to share with you just some final thoughts here. We had a thank you from Chantelle Bree said this is incredible, easily my favorite interview. I can't wait to share this with my support group. Thank you both. This is vital. vital for this work that you do. Tracy said. Thank you, Jordan. Let's see we have another here. Travis. Thank you. Kim says thank you. Jeanne says thank you, Jordan, what an important story you're telling. And Cass said thank you, Jordan guy. I look up to both of you so much for the work to help the most vulnerable kids. And thank you from the bottom of my heart. And finally hear from Jeanne. Thank you, Jordan, what an important story you're telling. And with that, Jordan, I'm going to let you go. I know I kept you a little bit longer than I promise. But thank you so much again, and thank you, everybody that watched us today. Please the part of the reason we do these is we want you to share them with your friends, your colleagues, people that need to understand the only way we make progress is by sharing stories and sharing this So Jordan, thank you, I will let you go. We're going to end the broadcast here. And thank you everybody for watching. I'll see you again in about two weeks. Bye bye