Episode 326: Carole Zangari, Tabi Jones-Wohleber, Rachel Langley, & Michaela Ball: The "Stepping Into AAC" Project

This week, Rachel and Chris interview the superstar members of the “Stepping Into AAC” project - Carole Zangari, Tabi Jones-Wohleber, Rachel Langley, and Michaela Ball! The “Stepping Into AAC” team shares about the core mission of the project: to introduce people to AAC, to guide them through the early months of using these new communication tools and strategies, and to offer resources to engage school teams and other caregivers. The program is divided into 20 parts with the intention to complete one part a week, making it more manageable!

Before the interview, Chris and Rachel share about their experience over the summer meeting up in Virginia! Chris also shares about Jennifer Wexton, a congresswoman with progressive supranuclear palsy who recently became the first person to use AAC on the floor of the House of Representatives!

Key Ideas This Episode:

Family-Centered AAC Education and Support:  The “Stepping Into AAC" project focuses on helping families understand and implement AAC through accessible training materials. These materials include videos, hands-on activities, and newsletters designed to empower families of individuals with Angelman syndrome and other AAC users by offering practical tools for communication development.

Habit Formation as Key to AAC Success: The “Stepping Into AAC” project emphasizes the importance of habit formation for long-term success with AAC. By breaking AAC learning into manageable steps and activities spread over 100 days, the program encourages families to develop habits that integrate AAC into daily life, making it more natural and sustainable over time.

Building Community Around AAC: The project recognizes the need for community, not just around the individual AAC learner but also for families. This includes support from other families on the AAC journey, professionals, and local communities, creating a sense of shared experience and providing much-needed encouragement and credibility to families advocating for their loved ones.

Links from This Episode:

Stepping Into AAC: https://www.angelman.org/stepping-into-aac/ 

Eleven Labs: https://elevenlabs.io/

Transcript of the Episode

Please Note: This transcript was generated using speech recognition & AI tools; it may contain some grammatical and/or spelling errors.

00:00:08 Rachel Madel
Welcome to Talking with Tech. I'm your host Rachel Madel, joined as always by Chris Bugaj. Hey, Chris.

00:00:13 Chris Bugaj
Hey, what's going on, Rachel?

00:00:14 Rachel Madel
Not much what you got for me this week.

00:00:16 Chris Bugaj
Well, I guess that we should start off with the welcome back, right? Because this is our first episode back since our recast episodes over the summer. Did you do anything fun?

00:00:27 Rachel Madel
This summer has been flying by and I've been trying to have as much fun as possible. I've also been working. I feel like that's one of the challenges with private practice is that I don't think the summers off. In fact, I feel like families often times want more services over the summer. So we're not doing intensives this year. In my practice, Which I find them to be very effective but very hard to schedule. So we decided to to opt out this summer just because the scheduling can be very difficult, but we've been keeping busy and also having fun at the same time.

00:01:04 Chris Bugaj
Yeah. Do you take any trips or go anywhere?

00:01:07 Rachel Madel
Just some some visits home to see some family, but otherwise, no, I didn't take any fun vacations. But maybe there's still a little bit of time left for that.

00:01:15 Chris Bugaj
Rachel, did you do anything fun over the summer, Go anywhere or see anybody?

00:01:19 Rachel Madel
Yes, Chris, I was blessed to see you this summer. I couldn't believe it. I went to a family wedding in Virginia and totally forgot that you live in Virginia for a microsecond and you're like, where's the wedding? And I was like, Virginia, You're like, where in Virginia happens to be like 20 minutes away from your.

00:01:36 Chris Bugaj
House. Yeah, exactly. So I was fortunate enough to pick you up at the airport with your brother and his fiance, and we got to hang out for a little bit for a day before before you went off to celebrate. Celebrate your family's wedding, right?

00:01:50 Rachel Madel
Yeah, it was super fun and it was funny because I feel like often times when I see you, it's very much work related. We're like meeting up at a conference to present or doing a speaking event. And so this was just like such an extra added bonus where it wasn't work related. We got to hang out and have fun.

00:02:09 Chris Bugaj
Yeah, it was great. It was great. Now, speaking about Virginia, that's what we need to talk about because some stuff has happened over the summer. Specifically, what I'm talking about is this story about AAC with regard to a House of Representatives congresswoman, Jennifer Wexton. I don't know if our listeners are familiar or if maybe this is the first time they're hearing about it. It's certainly big news in Virginia, but I would imagine it's big news all through the AAC community. So Jennifer Wexton was diagnosed with progressive supranuclear palsy, which impacted her her voice and, and a couple months ago there was a video of her being on the the house floor using AAC as the the first first person to use AAC in the House of Representatives. And so that was kind of exciting news. And then since then there was sort of been updates and what has happened is she worked with a company called 11 Labs, which does AI related stuff. And essentially what they were able to do was, and there have been other celebrity sort of people. I remember Roger Ebert back in the day had something similar where they, there was so much audio content that existed out on the web or in recordings that they were able to take her former voice and use AI in a way where she didn't have to record. Like we've known for a long time now that there have been tools where you could sort of train it with a voice to create something. You could volunteer your voice to create something. But this was using her voice with, with AI to, to infuse that with her AAC so that it sounds just very similar to what she sounded like with her with her organic voice her whole life until, until she lost the ability to speak. So that's been kind of a new update in the world of AI and it just makes me think how how impactful AI can be. So that starts with with her, right? But who? Who else will this be accessible to in the future?

00:04:18 Rachel Madel
Yeah, that's super exciting whenever we see AAC kind of make the public stage, and I feel like it's really cool to kind of understand some of the back story. It's also really cool that we have the AI technology now to just do like the most incredible things. I feel like before, we used to have to, you know, utilize voice banking, which is still a resource and a tool. But the fact that it can now scour the Internet and we're able to figure out how to create voices like, how cool is that?

00:04:49 Chris Bugaj
Yeah, fantastic. Now the other thing that I think was so super powerful about this is that it was a mainstream story like everybody was. This was shared in mainstream media where often times I feel like, you know, our podcast reaches a sphere of people and occasionally a spike outside of that where this was so many people were sending it to me like they had thought of me when they saw this. Hey, did you see this? Did you see this? In fact, even our super, our assistant Superintendent, that is like my boss's boss's boss saw it and sent it to me saying, hey, Chris, did you see this? Let's have a conversation about it. So it was super exciting that that AAC in this, in this light sort of took sort of a mainstream took center stage on mainstream for a hot 2nd right. And I don't feel like that has happened since the what was that TV show back in the day about five or six years ago? Remember, was it called Speechless?

00:05:46 Rachel Madel
Yes, that's right. Speechless. I forgot about that.

00:05:50 Chris Bugaj
Back then everyone was talking about it because in that there was the main character used AAC, a form of AAC. And now we have a congresswoman so and again, as the more people that are using it, the more mainstream it becomes, the less, the, the less, I guess the more accepted it becomes as and people know, know more about it, more aware about it, can share with more people about it. Like, hey, have you heard about this? Have you heard about this? And I feel like that's just a it's a good thing for everybody. So with just a little bit of a background story here with regard to this particular story, is that when that congresswoman, when Jennifer Wexton presented on the House floor, it was brought to my attention, Hey, have you seen this video? And one of my connections? Actually a Patreon supporter here, a friend of the podcast reached out to me and said, Hey, do you do you want to try and hook up with put your people in contact with her people and try and get her as a guest on the podcast? And so there was some interaction there back and forth, but being a super busy congresswoman, the answer was was no. For right now. She's already announced that she's not going to run for re election and that maybe we'll free up some time in the future. And So what we can do is maybe reach out again and see if we can get her on the podcast.

00:07:09 Rachel Madel
Yeah, I feel like with things like that, it's always like you got to get through the wall of people that get to her. And so it's like, I wonder if, you know, AAC since it's been so impactful, that would be something that she would be really interested in sharing about. But again, like anything else, it's like so many people to get to that person that you have to like do a good job of convincing or you have to have the volume of people asking. And so this is our ask to you guys. Write a letter or an e-mail so that we can get her on the podcast.

00:07:45 Chris Bugaj
Awesome, awesome. Now, Speaking of asks, let's talk about Patreon. So, Rachel, have we? Do we have new Patreon supporters?

00:07:53 Rachel Madel
We sure do, Chris. Let's shout out Kayla and Holly. Kayla and Holly are new to our Patreon, so we want to just say thank you for signing up. For those of you who maybe are new listeners or don't know, our Patreon is a way that we that you can support us. We have an amazing team, Luke and Michaela behind this podcast. It's not just Chris and I and all of the money that we make towards Patreon goes to support our team. This podcast would not be possible without our Patreon. In addition to supporting us, we also give back to you guys who are in our Patreon. We have a lot of really great content. Often times we're sharing behind the scenes things we're sharing. I share a lot of resources. So do you, Chris. There's so many different things that we share. And also it's been happening for how many years have we had Patreon? 4 years, five years long time.

00:08:49 Chris Bugaj
Long time, the most recent episodes or the most recent content? I should say. I don't know why I think of the episodes, but I usually there's content that comes out about once a week and just I'm going to read them off right here. At the time of this recording. We have a bonus podcast that you're on where you're talking about sort of a bunch of different, I mean, it's just a whole guest appearance on a podcast talking about different AAC stuff and work related productivity stuff. We have AAC user stories from Communication First. I mentioned them a couple weeks ago on the podcast. There's a bonus video that is you can find nowhere else on the Internet. The secret to using generative AI to design awesome educational experiences. The short little video that I made, I made a series of about 12 short videos that I have not put out on social media or YouTube or anything yet. I'm sort of keeping it as exclusive Patreon content and the list goes on of different web tools. We have different other webinars that that people may have missed. So, so definitely check it out. The, the Patreon is what we ask is about $8 a month, which is about $2.00 per episode. So if you think you this this podcast is worth $2.00, then we invite you to to participate in our Patreon, which you can check out over at patreon.com/talkingwithtech.

00:10:06 Rachel Madel
Yes, we're very grateful for all of our Patreon members. We get so excited when we get to meet our Patreon members in real life. I feel like when we were at ATIA Chris, it's just like if if someone's a Patreon member, they make sure to tell us and we love that because I feel so grateful. I give them a big hug and I say thank you, thank you, thank you. And it just feels like kind of a collection of of our super fans. And that just is really near and dear to my heart. And I'm just so grateful for that community. And it's just amazing how people can come together and and support the work that we do.

00:10:41 Chris Bugaj
Now, Rachel, you mentioned ATIA and that actually is a great segue right into our interview today because something that was all the buzz when we you go back and listen to our ATIA wrap up episodes, something that was a highlight that I think we've heard from a lot of people was the session on stepping into AAC. And we had the great fortune. We have connections with the stepping into AAC that the people that put it together. Michaela, who is our audio engineer for the for this podcast. Thanks, Michaela. It also was a one of the integral members of putting that together along with Carole Zangari and Tabi Jones-Wohleber, who have always been great friends of the podcast and great friends of ours. And so we've had a great chance to sit down with them, to have them talk all about their resource that they helped create called Stepping into AAC.

00:11:42 Rachel Madel
Welcome to Talking with Tech. I'm your host, joined today by such an amazing group of people. First of all, Chris Bugaj, who's always here with me. But we have so many amazing AAC All Stars in this room. So I, I feel like I, I want to just have everyone maybe introduce themselves because we have four other amazing SLPS here. And I'm super excited for this recording because we're talking all about this amazing project stepping into AAC. So we are working with an interview reviewing the creators of that. So I guess maybe we'll start just kind of go round Robin. Carole, I'm going to have you start.

00:12:18 Carole Zangari
First, sure. So I'm Carole Zangari. I'm a professor of Speech Language Pathology at Nova Southeastern University and working remotely from North Carolina today and have had the absolute privilege and honor of working with Michaela, Tabi, and Rachel on this project.

00:12:35 Rachel Madel
Yes.

00:12:37 Tabi Jones-Wohleber
Hi, I'm Tabi Jones-Wohleber. I'm a speech language pathologist. I live in West Virginia and I am currently working as a in home service provider for West Virginia birth to three and I do a lot of the AAC stuff.

00:12:52 Rachel Langley
And my name is Rachel Langley. I am in Michigan and I worked for 20 years in the public schools here as a speech language pathologist and AAC consultant. And I just recently began working as contractor with assistive wear and doing fun stuff with them.

00:13:11 Michaela Ball
And I'm Michaela Ball. I edit talking with Tech, but I also, I worked on stepping into AAC also on the film side, but I am ASLP and I work in the school district. So yeah.

00:13:26 Chris Bugaj
And thank you all for being here. I again, I can't, I just want to echo Rachel's sentiment here. Each individually, you've done amazing things for for AAC as a profession. And now together you've come together to build this project, stepping, stepping into AAC. So what was the genesis of it? How did it get started?

00:13:48 Carole Zangari
So just a little bit about it kind of to, to ease us into this and it, and it's sort of elemental level. Stepping into AAC is a set of training materials really designed to help parents of children's or teens or adults with Angelman syndrome move forward with AAC. So some families may be completely new to AAC, others may be familiar with AAC, maybe have used it for a time, but maybe AAC never really grew roots, never really blossomed into sustainable way of communicating for their family. So these materials include hands on activities and video and handouts and newsletters. And it was funded by the development of the materials was funded by the Angelman Syndrome Foundation. They're going to be available for free both there and on my website. Practical AEC, I guess, you know, you know, in a practical sense, the genesis really was that I was approached a couple of years ago to see if I would head up this project with ASF. They've had a long standing commitment to supporting communication and AAC. And I think probably all of us remember the communication training series that they did. I think back in what, 2015 or something with Erin Sheldon and Marie Nevers and others. And these were like long form that webinars, they did just a really a great job in teaching about key concepts in AAC like core vocabulary. And then after that there was some additional work including a pilot project that Tabi and Aaron did to support parent implementation, a project of AAC that we can talk about. And then I was asked to envision a set of supporters that would kind of build on that work and offer something meaningful to families on a on an ongoing basis. So you know that that's kind of like the the genesis of it. Awesome. I don't know Tabi, you, you have a different perspective having been involved in the pilot project to say anything you want to add or correct in my summation there.

00:15:55 Tabi Jones-Wohleber
No, no, I think that that's spot on. I think the idea was really to help families like over the long term that come at it from all different angles, that to have variety and the types of resources that were available and semi systematic so that families could access them in a way that could build their learning over time.

00:16:14 Rachel Madel
So I'm curious how this collaboration with the Angelman Syndrome came to be and kind of the goals of the project.

00:16:22 Tabi Jones-Wohleber
So this was in prior, just prior to the pandemic, Erin, Sheldon and I were doing a kind of envisioned a pilot project with the, with the ASF where we were meeting with families and we were sharing information and having conversations. We met on a weekly basis, but it started just as things were shutting down. So it was just such an interesting time for families to be coming together and talking about challenges and communication and all the things. So, so we met and we met for, I want to say upwards of 20 weeks. So it was a, it was a pretty long term commitment for our families. But out of that, what we came to realize was we were really searching for understanding of what do families need like boots on the ground? Like what is it that really makes it work for families? What questions do they have? What are sort of the challenges that are pervasive across across experiences? And what we came out of that for with the understanding that came out of that really was that families need different things, of course, but they fall into these sort of major categories and most and all families need some of all of these. So we, we identified 4 primary components of the communication partner learning process and it included knowledge and understanding of what, what is AAC. But even more than that, like what is communication, What is language and how those are all integrated to create those very I mean, language is and, and communication are very emotional experiences. So how does that, you know, how does our inner world manifest through these, these understandings, but also, you know, understanding about the technology. So having access to technology, whether it's people based or technology based, having a tool that lets you practice and explore and experiment with language is necessary. So it doesn't need to be perfect. Families need something that they can touch and feel and interact with in order to gain skills as an AAC partner. So knowledge and technology were two of the components. The third component that we landed on was skills. Over time, skills developed and skills are the actual like touching of the board or the device interacting with it, things like wait time. So like what makes up the interaction in terms of the words and the, the, you know, just all of those pieces. And then the fourth thing that we landed on was habits. So over time, you take the skills and you integrate them into habits. And then the habits become embedded and they become normalized and they become integrated into everyday experiences. And that, you know, that's the place where, but we're, you know, ultimately we want, we want families to be. So how can we provide supports that help families gain knowledge, explore tools, develop skills and ultimately habits? So that was really kind of where we focus. But over time, as we dove into this project, we really realized the there was a fifth component and that was community. So we wanted to also address the idea that families need community, they need community around their learner. They need people that are invested in their learner, that is are supporting them, are willing to engage with their learner, but also community of other AAC learners. So if you know that can be useful in in two different ways. So we really wanted to, you know, after, after the pilot project, we realized that these were really the foundational components that helped families feel like they were moving forward and we're in a good place to be supporting their learner. So that was really where we set our sights as we as we set about developing the content for stepping into AAC.

00:20:16 Chris Bugaj
There's a specific portion there that I want to dig into just a little bit, and that is the habit portion because like you said, there's this large breadth of knowledge and skills that and people come into that at different levels. And so how do you break it down into smaller chunks? And this is certainly something I have wrestled with my whole career, right? Quick Side Story, the way Tabi and I met the first day we met was like, I have a thing for you. And I ran out to my trunk and I brought out our strategy, a day calendar, which is this large chunk of information broken down to day by day content, right? And then ended up writing a book in the same idea. And this seems to be a similar way that you've tackled this, right? Because stepping into AAC is structured over like 100 days, right? And so can you help us help understand like what the what that time frame looks like and how why you would break it down that way into 100 days?

00:21:12 Rachel Langley
Yeah, so this is Rachel, not Tabi, but that was a beautiful segue.

00:21:16 Carole Zangari
Because.

00:21:17 Rachel Langley
We really know that communication and especially AAC learning can be a lifelong journey, but we really did want to emphasize the science of learning in the bice bite sized chunks we can provide for people to help build those habits and routines. And we also wanted to emphasize that we have learned and through Tabi's project she did ahead of time, that parents don't want to sit for the 1st month and just hear theory about what we're going to do from the beginning. They want to get their hands right on it. So we broke it into 20 weeks with five days per week having small activities and additional information, making that total of 100 days where each time there's a small digestible kind of activity a day that you can do knowing that over those hundred days. It's a really additive practice of building in habits and kind of cycling back and revisiting some things we talked about sooner because it's a hard AAC is not natural. It's something we really do have to learn, but we have to start somewhere. So even if it is here at print Out, pick one of these core boards that you want to use and we provide a variety. We have permissions from all different kind of developers to include different core boards within this kit and this program we've made. Pick one and get started, and then we'll have conversations about the why and the what and how and customizing as we go.

00:22:44 Tabi Jones-Wohleber
I was going to say, even within the different components, you know, each week has three different types of resources. And even within those resources, each one of them is really bite sized. Like we tried to really think about the moments when people have have a minute in life so they didn't feel like they needed to set aside time to do it. But it could just be integrated, like while you're in the waiting room or while you're at soccer practice, like those times that already exist. So that it felt manageable, like manageability was definitely a key goal.

00:23:18 Rachel Madel
Yeah, I'm happy that we're talking about habits because I feel like it's it's almost the missing piece in a lot of ways. You know, parents and communication partners are getting, you know, these kind of piece meal trainings, but everything feels very fragmented and kind of bringing it together and creating habits around AAC is really how we see success. I personally have kind of done a deep dive into just habit formation in general. I work mostly coaching parents. Sometimes, you know, teachers and paraprofessionals and other providers, but you know, it, it becomes the $1,000,000 question, how do you integrate AAC in a way that feels really manageable and achievable and eventually becomes so second nature that it doesn't even feel like you're doing this extra thing. And So what I love about what you guys have created is you don't need to work one-on-one with someone like me. Like you can follow this program that's been so carefully laid out and, you know, do this in an asynchronous way that feels bite sized. It feels achievable. And you know, you're stacking, you know, those skills over time to become habits. And I feel like that's just so incredible and I am so excited to kind of share all the work that you guys have done because I feel like it's there's such a missing piece with that habit formation. And I think that that's where we can actually like really help communication partners in the long term.

00:24:41 Carole Zangari
Rachel, you hit on a piece that that kind of goes back to that origin story a little bit. And it's the fact that, and this is a really sad reality, but in most situations, you know, folks who have AAC needs do not have access to an AAC knowledgeable team or clinician, even a single clinician. And so in the Angelman community, you know, they have had lots of interactions with SLPS, but but many times those interactions haven't necessarily LED them to, you know, a best practice approach with AAC. And so to their credit, many of these families have taken it upon themselves to educate themselves about what AAC is and how to do it, what some of the best practices are. But sadly, when they take that back to their team, they're often viewed with low credibility and, you know, kind of like kind of dissed a little bit. And so, you know, kind of, you know, you know, a larger purpose or maybe, you know, one of the like sort of hidden, you know, a genesis points for this project was, you know, to give, you know, kind of an on ramp to for those folks who are just really without support, either because of where they live or, you know, the the quality of the service providers in their community. Sorry to.

00:26:09 Rachel Madel
No, I think that's right. And, and I was just going to add to that. You know, I think what's really nice about this is not only is it useful for families who don't have access, that's consistent to an SLP who can kind of guide this process, but also for clinicians, it gives us a tool to really share and go on this journey alongside of the family. You know, often times we don't have enough time as clinicians to do all the teaching and all the things. And so if we have this kind of companion next to us, we're able to then spend our time talking about the, the, the problems that we're facing, troubleshooting those together, figuring out, you know, maybe that that didn't work. How could it work better? We actually can use our time for coaching instead of kind of spending all this time doing the teaching because there's just, you know, so much to do. And so I see this is a really awesome tool for clinicians to share with, with their clients and the families that they work with. And we can kind of go on this journey together and part of it is asynchronous. And then we come back together. And when we come back together, we can spend our time super strategically. And I can really be that support for you navigating.

00:27:19 Chris Bugaj
I would also add that by it being partnered with the Angelman Syndrome Foundation, it adds A level of legitimacy. So when a parent might be saying something to a school team or a school team is trying to advocate to an administrator, it's not like, oh, I just found this YouTube video or I found it on Instagram. I'm here. This is what I want to see. This is what we have to do. It's like, no, it's on this foundation's website. It's been adopted widely. It's not just me saying this, and it's not just somebody on Instagram. It's people can't see me holding up my phone pointing to the Instagram post. But it's like, see, it's more than just me saying this. This is why we need to adopt it and embrace it.

00:28:00 Carole Zangari
That really was one of our secondary goals and you know, really to help families gain credibility with their team relative to their knowledge and commitment to a A/C.

00:28:13 Rachel Langley
I, I wanted to say the the Angelman Syndrome Foundation did a fantastic job in supporting and this whole project really highlights individuals with that syndrome. However, the coolest thing about this project is it applies to all AAC learners.

00:28:30 Rachel Madel
That was one of the things I loved about the most was the interviews with families and like you, we talked about that element of community. And even if a family doesn't have access in their, you know, neighborhood with a family who is on this AAC journey, I just felt like that was such a beautiful addition was hearing directly from families. Because I feel like if I'm just starting off in AAC and I am listening to a, you know, another mom share her experience, like all of a sudden and I feel like, OK, like if that mom can do it, then I can do it. And I just thought that that was such a beautiful addition to the work that you guys did. And I thought it was, you know, I mean, there was amazing things throughout all of it that I was like, yes, yes, yes. But that was the one thing I was like, yay. Like they actually had families who have children learning AAC and using AAC. And I just thought that was great.

00:29:22 Tabi Jones-Wohleber
I have to say I had the pleasure of doing most of the interviews and it was my favorite part.

00:29:27 Rachel Langley
Yeah.

00:29:28 Tabi Jones-Wohleber
So and it was just so wonderful to have the opportunity to sit with families and hear about their joys and hear about their challenges. They were so candid. They had so much insight and it was absolutely as a, you know, as a practitioner, it was just amazing to, you know, dive into like what was at the core of their experiences. And I'm just like, from the bottom of my heart, so appreciative for their willingness to to share as they did. And as we went through and listened to the video, you know, watched, we watched the interviews to pull clips, you know, I feel like some of our videos were just they, there was so much more legitimacy. There's so much more credibility because of the representation of the family. So I agree with you, it was a highlight.

00:30:13 Michaela Ball
I was going to say, I actually have used, I have quoted the parent interviews to help staff understand why we do things. And for some reason, hearing it from a parent perspective weighs more than from the professional perspective, and it's been very helpful.

00:30:31 Chris Bugaj
So you're talking about like making it consumable for parents and these and Tabi, you mentioned earlier about how it's structured into different buckets, like where you mentioned the habits and the community, right, this 5th bucket. But there's still the intimate design of when you're engaging with things, like you said, there's a, there's a portion that is an action, you're going to do something. So there's different, there's different portions of the experience, like there's action steps and signposts and travel log. Those sorts of materials are all put in there. Can you discuss those a little bit and describe what how what each one of those are and how they work together?

00:31:07 Carole Zangari
Sure. So the action steps are five days of very, very simple and brief hands on activities. The signposts are our video component and the travelogue is an AEC newsletter. And as Tabi mentioned earlier, families are going to use these three tiers of resources every week. By design, there's a considerable amount of redundancy so that key concepts are never presented just once. You may start off by doing something and then learn why you're doing it in a video and and then you know, read more about it in a supplemental handout or the newsletter. Explore some of the resources we link to. Then you see it in an action in another video or hear a parent talk about their experiences with it. So the design has a little bit of a spiral element to it so that those foundational content and the key concepts, they come up a few times in a few different ways. And we really felt that was important for us to do for a couple of reasons. One is, of course, you know, as we all know, people of different learning styles or different, you know, preferred ways of consuming content. Some like to read or listen or watch or, but we all learn by doing. So we definitely wanted to start with that. But another reason really was that we wanted to be very mindful of the constraints that these families have. Their time is limited and so is their ability to focus and their energy to implement new things. So they may have weeks where they are embracing AAC with passion, with energy, with enthusiasm and then poof, right, life happens kind of thing, right? So a spate of seizures, problems with sleep, illness, you know, whatever it is. And so they may go a week or two where they're less engaged and we didn't want to risk them missing something important when they're sort of semi tuned out, right? So those key strategies and important concepts, you know, had to be addressed in more than one way at more than one time.

00:33:16 Tabi Jones-Wohleber
I think it's also important to note there that time time frame is really flexible. Like we, we organized it into a sequence and we, the content is presented in, you know, chunks that are iterative, but you know, there's going to be weeks and families are going to need to set it aside and prioritize other things. There's no, you know, there's, there's no consequence for doing that. So it can be as self-paced as it needs to be, but it's chunked for for usability.

00:33:43 Rachel Madel
I think that makes a lot of sense just given the nature of many of the families that I work with. It's like we're not always on, right. We have kind of seasons and cycles of motivation and especially a lot of our families that are working with, they have children that have complex medical conditions and you know, there's so many different moving pieces. I love kind of how that was baked into the project and that thought process because it's just it is one of realities of working with families and knowing that not we do not always have 100% attention, participation, all those things. I'm curious, just thinking through the lens of the creating a project like this, it just feels like, wow, like there's so many different things to think about. Like we know this field is so vast and all the information is is out there. How do we organize it? I'm just curious from your lens, you know, how did you create this and like make it comprehensive but also manageable? Because I feel like those two things kind of are at odds. It's like if we're super comprehensive, then like that doesn't necessarily feel manageable. So I'm just curious how you guys kind of navigated that?

00:35:05 Tabi Jones-Wohleber
Well, I think early on we we just started off with just a lot of conversations. I mean, we spent a long time just talking about what we wanted to include like weekly for a year or more. So a really long time trying to identify like, what are the topics, what are the chunks? What does it look like when those are broken down? And then how do we organize them sequentially so that they make sense so that families are getting it over time, but they're getting things, you know, the things they need the most 1st and you know, what builds on one another. So we could do that in a, in a structured way. So it was, it was very, very thoughtful and I, I would say very slow moving. It's a start. Like we really wanted to, to break it down into, into all the components and lay them all out and then figure out what to do with them. So we spent a lot of time just really working with those pieces. We have this massive draft that provided the outline and it was our, you know, it was our Bible. We always went back to our chart because we've spent a lot of time being really thoughtful about, about the structure of that chart. So that's what we sort of figured out what we wanted to do in the sequence. And we, you know, we've worked on the chunking of it again for usability, but of course in as low pressure as possible. So that was, you know, that was sort of the organizational piece, but the, you know, the other sort of challenge of something so large. First off, I think we should say that it ended up being much more than what we initially anticipated. We just kept going. We kept thinking like what did, what would I want? Like, you know what have I always wanted, essentially?

00:36:46 Carole Zangari
We need the Mission Crepe T-shirt.

00:36:51 Tabi Jones-Wohleber
Resources I have always wanted to to make my job easier and that's sort of what we set ourselves for the task we're creating. So it became, it became quite a bit bigger than I think we initially anticipated because we really were trying to include it all. Of course it didn't. Of course there's always more that you can the dress, but yeah. So yeah, as things expanded, we just tried to to tackle it in trunks and and always sort of cycle back to see if things were aligned as we went through. But it's a lot.

00:37:26 Chris Bugaj
I can imagine as you were developing it, it was one of those things like yes, and, and we should and that too. And can we, can we cut that? No, because somewhat this handful of people might need it. So let's put that in there, right? I can imagine those conversations. And it took you a couple of years, right? I mean, you said you started this during the pandemic. Just in the last three or four years, you see how maybe AAC has changed and new topics have come up. And gosh, I know if I could go back in my early times of my career, there was things I would do differently to, to give them more Evergreen, like I'm making something. And now you know that that technology has faded or this new strategy has come out that is even better, right? So just within these three years, but then thinking, OK, we're, we're spending a big chunk of our lives to build something, how do we make it last for as long as possible? How did you do that? How did you navigate this evolving landscape of AAC?

00:38:24 Carole Zangari
Well, I think part of it is just managing your expectations, right? Because honestly, I, I don't know if it's realistic to think about it in a way that it will stand, you know, forever kind of thing. You know, the idea here is that the very nature of language is dynamic, right? So our understanding of what should be prioritized in AAC, right? We are a very new field from a research based perspective, right? So understanding what should be prioritized, how to teach it, right, that's going to be dynamic as well. So I think with any project or tool or material, it's important to own up to like what it can and what it can't do, right? You know? And this was a set of materials created in the context of the pandemic and the post pandemic era. So in some ways it was sort of defined by that. And I think having said that, as as Tabi said, we had endless debates about a lot of things in the project because we really did want these materials to be useful for a good period of time. So we went in circles, we backtracked, we tried things in different ways. Should it be linear? Should it be a buffet? You know, we, we did as much as we could to try to predict some of the issues and concerns and problems that folks would face in the real world and try to deal with those honestly. And I think the participation of families was a huge asset to us in this because, you know, knowing, you know, getting their feedback allowed us to, you know, make course corrections. But I guess time will tell what the shelf log is.

00:39:58 Tabi Jones-Wohleber
I think to, I want to give a shout out to Michaela here because I think early on when we thought about, we knew we won the video content and you know, we're all SLPS, we're not videographers and audio design. As she is and she had so much insight on what, how to create those for longevity. So she, you know, and we came her to her with our initial ideas about what a video would be. And I think she was kind of like, no, we're not doing that.

00:40:28 Carole Zangari
Yeah, it was for Michaela. We would have had plain talking head zoom videos rather than a dynamic and changing videos that that we have.

00:40:38 Rachel Madel
I have to say, I feel like, you know, as much as we want to say like, oh, the information's the most important thing. And I would argue that it is like the delivery of the information matters. And I feel like you guys did an amazing job of the production value of the videos, the design of the resources. Like again, like I want to, I wish we were living in a world where those things didn't matter, but they actually do. And I feel like you guys did a really incredible job of putting together not only content that's really strong, but also the package of that content is really well done. So just know that I'm really into design and delivery and all of those things. And I'm like, wow, this is so good. I'm so excited like because it's like, it's like the full package well.

00:41:25 Rachel Langley
Thank you for that. It's not only considering kind of like you said, the components of what questions are we answering or how can we trickle in core words, but is it accessible? Have we thought about like the color differentiation and the materials we're making and can it be transcribed in the video? And so for us, I feel like it was it was taking our experience, but then we just kept layering more ways thanks to input from Michaela and guidance. You know, Carole has probably done more projects than than Tabi and I have that kind of grow in this size and scope. So it really was that team effort and to see all those pieces weave together.

00:42:05 Rachel Madel
I love it. So I know this is a reasonably new project, but I'm curious, are there success stories, families that have gone through the program that are like, yes, like I want to hear you know from from families who have gone through this experience and I'm curious if you guys have any success stories.

00:42:24 Carole Zangari
Well, they are so new they have to haven't actually been fully released as of this recording. So it's a bit premature to talk about success stories. But I will say this, when we've shared this work at conferences and meetings, we get one of two messages from participants. Professionals often tell us, families often tell us this is just what they need, right? They've been looking for something like this or professionals will say that they've creating something similar, but not as comprehensive. So I, I, I think, you know, we're, we're optimistic that these materials will actually be used and be useful. And I think, you know, something that I think will be impactful specifically to the Angelman syndrome community is that we tried really hard to represent different forms of Angelman syndrome so that every family would see how their child or teen or adult could be successful with AAC. Because Angelman, like many genetic disorders, it has a few variations, each one with a, you know, a different kind of flavor or presentation. And we didn't want any family to feel left behind because the type of Angelman syndrome that their loved one has wasn't included. We don't want any family to kind of feel defeated thinking, oh, that kids successful with AAC because they have a less severe form than what we're dealing with. It probably won't work for my kid, right? So we imagined how painful that experience would be and tried really hard to include that sort of broad spectrum and, you know, identifying families and encouraging them to participate. And I think kind of along those lines, we all know that communication is learning is not limited to early childhood. But sometimes parents are given the message that if your kid isn't introduced to AAC early in life or they're not successful, come with it by the time they're eight or nine or ten, you you've messed up in some way. You've kind of missed the boat, right? And I think we've probably all had the experience of kids who had their first decent crack at AAC when they were in later childhood or in adolescence or even as an adult. And you know, many times they rock it, you know, you know, once they have the appropriate support at a reasonable dosage, right, they make, they make really good progress. So for us, it was really important not to focus on the little ones, as cute as they are, but also to normalize starting an AAC journey later in life, right? You know, lots of families started AAC when their kids were younger and they just didn't have the bandwidth for it, right? Or they did it, but they didn't have enough guidance, so it kind of petered out and we wanted to create kind of a safe venue for them to re engage.

00:45:27 Chris Bugaj
I love that so much because it's something in the broader assistive technology world that I didn't understand when I first started, which was that, oh, someone said, no, it's not a no, it's a not right now, right? I can come back to it and maybe use that tool or that strategy later. And that's certainly a theme. I think, Rachel, you might agree with this, that we've interviewed a number of AAC users and in their stories of, like, people tell us what happened, it's been a number of fits and stops and starts and wrestling with changes and then eventually landing on where I am now. And that where I am now might shift and move and change. And it's ever evolving. Yeah. OK, Speaking of ever, ever evolving, take a deep breath. You did amazing work. What comes next? Where does stepping AAC go next? What are the next 100 videos? What? I'm joking or maybe I'm not, I don't know. Will you tell me what what comes next?

00:46:21 Rachel Langley
Wow. I don't think this team is ready to even dream of what another 65 videos or 100 videos would look like. But we are thinking, thinking about what's next. Like Carole mentioned, it's slowly rolling out. Right now the ASF has introduced kind of the 1st 10 weeks of the first half of the project and then they will roll out that second-half and you'll be able to find that content on practically AC as well. But we're realizing we're getting some questions about like, well, how, how might this look? I'm not maybe a parent or family, but I'm a provider. So we're looking at some sharing it across some conferences and events where we can provide people with like a train the trainer vision of OK, how can we help you see how to use these materials? How can we help you facilitate? You know, we, we have people when we've talked at conferences, some people in early intervention that birth to three are just like, yes, love this. We know what we're doing with this, but maybe a parent is really excited about it and they want to start a parent group and they have a Facebook group. They're all going to go through it at the same time, you know, there's different ways these materials can be applied and relied on. So we're going to a couple different conferences and helping people think through that and do some hands on practice of what would it be like to do week 3 together in a group. On top of that, we are starting to get questions about adaptations. Perhaps, you know, whenever you lease something, people would love to hear it in Spanish and Portuguese. And but it's not as easy as it's, you know, translation of material is, is really challenging and it is kind of a next level. But those requests have started to come, which is a good sign. It means people are looking at the material and they want it more accessible. But that truly is that's that's a whole nother chapter that we just had to say for now, we have to get it out as it is. We'll talk about how we can help people apply it, and we'll talk about how we might make it even more accessible in the future.

00:48:26 Chris Bugaj
I think that is a thing, Rachel, that everyone deals with, especially in assistive technology and people who focus on accessibility. Some people kind of beat themselves up like, well, it's not as accessible as it could be. Yes, we're on, we're on a journey towards even more accessible, right? We, we did the best we could with the resources we have and the time we have and we're going to keep getting better, right? So I think it's OK that it's, it is what it is for now and understanding that there's more that you can grow because I think a lot of people would would just stop like they think it's done. They never even thought that there could be this could be in a different language, right? And you are certainly thinking that down the road.

00:49:06 Rachel Madel
I'm really, really curious how and the evolution of this will kind of go down with, with providers because I think that, you know, as you guys share your work, as more people learn about this, people are going to start figuring out ways to use all this amazing content. And I'm really excited for my own clinical work and how I can, you know, share it and utilize it. It really does solve a huge problem in our field of helping communication partners learn about AAC and kind of holding their hand the through that process when we don't have the time to spend with the families and the communication partners that we work with. And so I'm really excited to see kind of what happens. And as you guys keep getting more insight and going to conferences and presenting this work, I'm sure ideas will start sparking and the ways that people are using it, it's really cool to kind of think about what that will look like.

00:50:05 Tabi Jones-Wohleber
OK, so we're excited for that too. We're excited to see how it goes legs and ends up in lots of different places. I think one thing that's interesting is, you know, we obviously all help create the content and I have been sharing it. I'm an EI provider, so I definitely share it with my families and use it as sort of a, a foundation of our conversations. And I had a conversation with a parent. This was really before it was released. You know, we have been going through different information and strategies. I didn't work with this child for very long before he aged out. But when AAC, when it started to show up on the website, it was like, hey, you know, like here's here's week one, watch these videos because this is these are the things we've talked about. And they came back to me and they were like, Oh my gosh, I know we talked about it, but now I get it. So I think we have these conversations with people, but the conversations like there's no visuals and there's the, you know, we have, we give verbal examples. So we don't have the visual content and the structures and the charts and the words and, you know, you know, he read through the newsletter, the dad and just having it concrete made it more accessible than the conversations that we often have with families. So, you know, I, I am, you know, based some of those, those videos, I'm the face on the screen. So he's getting it from me. Same person, but he got it when it was just in a more more concrete format.

00:51:25 Chris Bugaj
Well, you know what that speaks to me Tabi is it's a multimodal experience, right? So and you've got that relationship already. So that's kind of set the seed. But then there's the the audio and the action, the doing barrel that you said, right, you're actually doing stuff. So all of that together creating that multimodal experience, I think is really helpful. And I have two other thoughts. One is that I could totally foresee people coming up to you at conferences or emailing you, like you said, and them using it in a way that you never thought, you never even envisioned. All right, that happens. I hear those things all the time. Like, wow, we never even thought that. What a great idea. I didn't know they were going to do it. They were going to have a special plane ride where they were going to do a seminar on the plane together or whatever The thing is, right? There'll be some way or we integrated with this other tool and we're using it here, right? And so I think that is that's going to be exciting to hear all the different ways people use it. And then an immediate thing that I think people will use it for is we know with the podcast, some people have used the podcast to have conversations around, right? Like, let's listen to this episode, like a like a book study. Let's let's listen to this episode and then have a conversation around it. And I could totally see teams of people doing that with this content, right? Let's let's pull up this, this portion of, of the of stepping into AAC kind of a do a deep dive into this. Did you understand it the way I understood it? Yeah, because this and and suddenly you haven't even a deeper understanding, right? Do you see that happening?

00:52:57 Carole Zangari
I definitely do. I also see it, you know, possibly being used in pre service preparation programs. You know, I can see using this, you know, I teach AEC 3 semesters a year and I could tell, you know, I, I tend to use more of a flipped classroom approach. And I can see integrating some of these videos. And then when we cut together in our synchronous time, being able to talk about some of the nuances regarding implementation. What are some of the roadblocks you might face? What are some ways you can, you know, kind of get around those things and you know, it just gets them one step closer to true clinical practice and and really ways that will support families?

00:53:36 Chris Bugaj
I even see that with AAC camps, we know a number of camps where parents come together, the kids go off and do stuff, and the parents stick around and do training, and I could totally see that integrated into those sorts of experience as well.

00:53:50 Rachel Madel
I was going to expand on what you said, Carol, as far as preservice SLP's. I also just think general SLP's who don't feel confident with AAC, how amazing would it be to go through this process with a family and you're learning as they're learning, right? And so I think just in general in our field, many SLPS do not feel confident with AAC. They feel very daunted. And again, it's fragmented. It's like I did this one course and I was watch this one video and I have this one website. And so just having this kind of comprehensive experience I think would be good for SLPS who don't feel confident themselves in kind of guiding the process with AAC and understanding kind of all the the nuances.

00:54:33 Carole Zangari
That's such an excellent point. And you know, we, we tried very hard to encourage families to make connections with their teams, strengthen connections, re engage with their teams if things went South. And one of the things that we did was give them sample verbiage to be able to push out to their teams before they get started every week if they want to send them some of the materials. And then at the end, setting an intention, right, and setting some expectations for what's going to, you know, how to proceed. And we purposely made that like, not pretty and not like something to print and hand out, but gave you sample verbiage so that you could personalize it to your situation. But if you didn't feel confident starting from scratch on that, you at least had something to work with because I think, you know, so I mean, you know, probably many of us on the screen have had the experience of doing AAC boot camps for our fellow clinicians, right? And you know that it's not that they don't want to do this, right? Many of them just feel a bit overwhelmed, feel a little bit, feel a little bit insecure. And I think would very much welcome a true partnership with a family who is willing to, you know, kind of move forward together pointed in the same direction.

00:55:54 Tabi Jones-Wohleber
I think too, like most of us have had the experience of really like our primary role was supporting staff and we carry those experiences, carry those experiences with us into the development of this project. So while it was very much geared towards families and it's, you know, focused on families, there is this underlying awareness that of how this can impact, you know, service providers and staff and across the spectrum compare professionals to, you know, educators, other SL, TS, even administrators, you know, like again, getting community around the learner really takes that village. So having, you know, addressing some of the issues and a really accessible and friendly way so that the team can come together to move forward.

00:56:42 Chris Bugaj
I think this brings us to our last question, which is at the beginning of this podcast, we talked about how these great individual minds who have done so much in in the work of AAC have come together. So you're individually now collectively. So let's do a quick round Robin. Maybe you have some sort of common theme or maybe it's an individual thing. What's piquing your interest lately in in the world of AAC? And I'll say or so it's and, or if you want, you could also talk about if there was one thing you'd want to put on a billboard about AAC, what would you want it to be?

00:57:22 Carole Zangari
Well, I don't know about the Billboard, but I can tell you what I'm excited about and that is that I am just thrilled to see the AAC field move beyond the basics and really start to get into the meat of language, language development and language intervention in AAC. We have just kind of skipped over that a little bit for many years and now there just seems to be much more momentum around the topic. So I, I love that researchers like Gloria Soto are challenging us to rethink our assumptions about what we should be prioritizing and vocabulary selection and language teaching, right? We've relied on frequency lists right in core vocabulary for a long time. And so for me, it's refreshing to be called out to re examine that and think about what we're missing by focusing on those high frequency words and things like that. So I'm super excited to see, you know, us get kind of level up and get further into the the world of language.

00:58:26 Tabi Jones-Wohleber
For me, I'm really, I find myself in kind of an introspective place thinking about families and like what their journeys are like. So I find myself really focused on this idea of empathy and advocacy and how engaging with families where they're at, regardless of what their priorities are, what their, their resources might be like, just where they are in the context of their life, the roles that they play, the hats that they wear, how much bandwidth they have and like what it looks like to move forward and how the pace is not the same for all. And, and, and people take and process information in different ways. So I just find myself really pondering and considering like where families are and what that means for me as a provider and how to support them in a meaningful way, stepping out of sort of my, my agenda and addressing it in a way that is more more meaningful and, and productive for them.

00:59:27 Rachel Madel
I love that Tabi and I am also in a similar space. I think that so often we hear from SLPS they're like, but they just don't use it at home and like they're just not modeling. And it's just like this kind of cast of blame or frustration with families. And I think if we come from this deep place of empathy and curiosity, we're just better able to meet families where they're at and really support them because that's our ultimate goal, right? And we, we often times get so excited about language outcomes and, you know, having our students really progress with language and using AAC. But at the end of the day, like how can we be there to support families wherever they are in this process and, and knowing that that changes and you know, shifts and we have to kind of change and, and shift with it.

01:00:13 Tabi Jones-Wohleber
Yeah, I think that families of the lifelong communication partners of their learners, no other provider, no matter how long they work with the learner will be as lifelong as a family member. So if we can't, we have to get them on board, we have to support them where they are to make the most fun.

01:00:30 Rachel Madel
I love it. Rachel, What's what's up? What's next?

01:00:34 Rachel Langley
Well, in addition to this project, I feel like it goes hand in hand that one of my kind of passion projects is supporting the Talking AAC conference, which is now a nonprofit here in Michigan. And every year we hold a conference late fall, kind of early winter ish with a similar goal of this project, although we go about it in a different way. But it's to continue building knowledge, skill and capacity to support people to communicate throughout their day. So we invite, it's typically a lot of SLPS, teachers, families and other kind of service providers and support staff. And we have a 2 day conference each fall. So if you've ever had any part in conference planning, you'll know it gets really busy for part part of the year, but it never quite goes away. You're just always in some stage of planning. So I'm excited for that this fall. It's November 7th and 8th in Michigan and just hoping to keep seeing kind of the the fruit from that as as people keep returning and growing and people who've come to learn before come back and then share their experience. So.

01:01:42 Rachel Madel
I love it, Michaela.

01:01:46 Michaela Ball
Well, I suppose my current maybe not curiosity, but passion project is training our staff members and our district to raise capacity and understanding how to facilitate language both with and without AAC. So I'm really excited to take what I've learned from this project and start talking about it more and implementing it more in a way that helps guide so that we're all raising the bar. I'm really excited about that.

01:02:22 Chris Bugaj
What a great final message.

01:02:25 Rachel Madel
I love it thank you guys so much for coming on, sharing the kind of genesis of this project and all the details. I'm really excited to share this with all of our listeners and the work that you guys have done for our community is just really amazing and I'm just so excited to see the impact of all of all of your hard work and efforts. You guys have really created something incredible and we're, you know, here talking with tech. We're excited to share it with all of our listeners because I just can't wait to see what people start kind of doing with it and how how the project grows over time. So thank you guys so much for for doing it and also for coming on and sharing about it.

01:03:03 Carole Zangari
Well, thank you so much for having us. You know, there's nothing better than, you know, you know, being at the very tail end of a project that you really put your heart and soul into and then having the opportunity to gloat about it a little bit in front of some of your closest friends, right? And I really appreciate the opportunity. So thanks for having us.

01:03:21 Rachel Madel
Yeah, it's a celebration. It's a party, you guys.

01:03:25 Tabi Jones-Wohleber
Yes, thank you so much. It's been a passion project for sure.