Episode 299: Meredith Hankins, Morgan Payne, & Susan Lee - Creating a ”Girl Talk” AAC Social Group

This week, we hear Chris’s interview with Meredith Hankins, Morgan Payne, and Susan Lee!  Morgan is the mother of an 11 year old girl, Sophie, with Cerebral Palsy who uses AAC. Susan has a daughter, Alyssa, with Rett Syndrome who also uses AAC. Meredith is an AAC Specialist with United Ability in Alabama who works with their daughters and helped to bring them together in new ways! These three share about how the idea for a “Girl Talk” group came up organically in community-based therapy and eventually grew to become a weekend camp at Dolphin Island Sea Lab organized by Susan!

Before the interview, Rachel and Chris answer a Patreon user’s question about creating a “best buddies” club for general education and special education peers at a high school site! They discuss the importance of setting up an authentic peer interaction, ideas for fun activities that all the students can enjoy, making the project student led, and more!

Key Ideas this week:

🔑 Students will often communicate differently with peers compared to staff and teachers. Family and therapists don’t always think about the impact a peer communication partner can have on an AAC User’s motivation to communicate and have fun!

🔑 Morgen and Susan say, if you want to find opportunities for your child like communication camps, check with therapists, doctors at children hospitals, and parents of children with similar needs to help expand your network and find new opportunities.

🔑 Susan took all she has learned as a teacher and mother and helped to create Camp Speak, www.campspeak.org, an overnight camp in Georgia for AAC users 5-18!

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
Welcome to Talking To Tech. I'm Your host Rachel Madel, joined as always by Chris Bugay. Hey, Chris.

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

00:00:14
Not much. We have a listener question that we're going to answer today, and it's from a Patreon member.

00:00:21
Awesome. Love it.

00:00:22
Holly is a new remember to Patreon and she has been quite active and she asked us a question about one of our most recent episodes, Episode 292. So I'm just going to read her question that she posted in our Patreon. I was so happy to hear the first part regarding the work in a kinder classroom while I am taking that idea and making it happen at my school. Awesome Holly.

00:00:46
Way to go, Holly. The teachers and the parents are so excited to make this happen. I'm already working on my bingo boards. So here's another question. We have an organization called Best Buddies and the executive board reached out to me asking to help support general Ed buddies with their buddies with devices or some form of AAC. They want to make it an event and I was wondering if you guys had any ideas?

00:01:07
This is at the high school level for now. Thank you.

00:01:10
Yes, tons of ideas here Holly. So it sounds like the Best Buddies program is for high school students and then they are working with their community to support different factions or functions. I guess is that maybe of the way to think about it? But I know that. I mean I I currently have a high school student living in my house.

00:01:34
One just left the house. They are active members of that community and they were participating in things like in our neck of the woods we've call it partners Club, but it is, it is some sort of way, some sort of organized, structured way for students to support other students and in particular students with disabilities in a very respectful friend. We're friends sort of way. And when it comes to AAC, Oh my gosh, where do we get started, right? I mean, there there's there's literacy support.

00:02:07
There is teaching core vocabulary. There is making materials for teaching core vocabulary. There is spending time together on becoming effective communication partners. And good, just what it means to be a good communication partner. There's playing with robots, right?

00:02:22
Let's come down and play with robots. There's giving students the opportunity to be even giving other people directions, thinking about how do we build in more opportunities for pragmatic functions. And I'm just sort of like spewing out a bunch of quick ideas rather than developing all of those. But those are just some off the top of my head, let alone all the other. Like let's just paint together, let's play role-playing games together.

00:02:50
Let's play board games together, right? All of those with, you know, being a good communication partner with, you know, showing modelling on the communication device. And I think all of it does start with a little bit of training to the best buddies about what makes an effective communication partner. You know, providing wait time waiting for someone to formulate their message modelling on a on a device. Maybe it's a static board that you have there.

00:03:17
Maybe there's an opportunity to have a more dynamic system there that the best buddies could use. So maybe there's a Interactive Whiteboard that could have software up on it that someone could use for modeling. So there's so many ideas here that that could be started. My biggest thing would be like just go, like go do it. Like like get these kids involved.

00:03:41
Because they will love it, right? They will love being part of this community.

00:03:45
Yeah. And I feel like what's really nice about these types of things, especially when they're kind of getting off the ground, is you don't really know what it's going to be. And I think that we have all of these intentions to try to have everything solidified. And we wanted to go this exact way. And here's all our ideas and our plans.

00:04:04
And then you start doing something and then you realize, OK, like we need to go in this direction or that direction or that really didn't work. And here's why. And I feel like there's like, yes, all of these ideas are great and you can have lots of ideas and plans when you go into something like this. But I also think there's this beauty in just seeing kind of how things unfold. So having a loose structure and then seeing how things unfold and then asking, asking the students, like what do you think?

00:04:32
Like what's what's the next, you know, week going to look like? Because I think that that could be really powerful too. To have kind of a community where it's not just like the adults kind of leading but like really fostering those interactions and then especially like allowing the students to kind of take the lead and run with it.

00:04:53
For sure. For sure. Well, you know, one of the things I mentioned there was the creation of materials and something that I think anyone working in public schools today would be like, man, well, and actually for a long time, like, man, kids are just not motivated to be there. It's like, yeah, again, living with someone who lives who goes to high school right now, Yeah, they're just not motivated to go into social studies class and learn this boring content that they don't. They're not sure how it's going to relate to them when they leave the classroom, you know what I mean?

00:05:24
And I don't mean just social study as I mean really any content. That old question I used to ask is when will I ever use this? Well, kids are asking that even more frequently now. And all that to say, hey, what if we did something really meaningful with this time, right? What if my daughter for instance, is learning sign language, right.

00:05:46
What if we actually made a sign language? When you're practicing your sign language to a video that someone's going to watch on the Internet, had that as a as a supplement, you know, hey, if you need sign language, here's this goes with that video. Like pair it with it, right. So when it comes to making materials, OK, maybe we could be recording a video of modeling on a storybook that we've that we've read. Maybe we can You're in a coding class.

00:06:10
Maybe you can Not just you're coding, but coding a video game to learn the word go, you know or stop, you know. And this little character is who you're who you're coding to move around the screen goes and stops and then that is something that the, that person who's learning those words could then interact with, right. So and those are just two examples of ways that you can build in meaningful ways into the curriculum to to to support other people and those kids will show up for it. They'll be like, Oh my gosh, I I'm actually doing something that's meaningful. It's helping somebody else.

00:06:45
You know, I'm not just learning content to spit it back out on a test.

00:06:48
Yeah, one thing I've been really loving with some of my older students is we've talked about Canva before on the podcast at length. But I love Canva for multiple purposes. I've been helping one of my students. He just got an Instagram account, so we've been working on captions and literacy with his pictures. We also have been working on texting.

00:07:11
And so there's this really awesome website chrisitscalledifaketextmessage.com and there's a few of them, but that one, you know, is just the one that I ended up using. But it's essentially a website where you can create a mock text message thread so it doesn't actually send to anyone. But I find it so motivating, first of all for students, because what do high schoolers want to do? Like they want to text their friends, right? Like that's like a huge thing, that that's a huge way that teenagers are communicating.

00:07:45
The other thing I really like about it is especially if I'm working on social, pragmatic skills, conversational turn taking, how to respond, you know, to a question, things like that. Like what a great way. It's visual, We can see it. We can take our time, We can work on literacy skills, like there's so many things that you can target within that specific activity. So I feel like that could potentially be a good one too.

00:08:08
Love it, love it it during the first meeting of the best buddies when you get together to talk about this. What I would suggest, Holly, is to to express your needs. Like here's some things we need and have some back pocket everything. I just rambled off like, hey, you could do role-playing games. Hey, you could do coding exercises.

00:08:27
Hey, you could help organize a dance all the things right, but don't keep those in your back pocket. Let the the best buddies come up with what they would do, right. And then they'd ask you. Well, Miss Holly, what do you think? Is that a good yes?

00:08:40
Go with that. Go this way. They have all the ownership and you just guide them. I feel like that is. That's some advice we could give you.

00:08:49
The other thing that I would maybe steer a little bit away from is the, I wouldn't have it on the slide. I would answer this question when it comes up is but what do I get out of this? Like do I get hours for participating in this. You're doing it for the wrong reasons if that's why you're here. Do you know what I mean?

00:09:06
Like that you're not that yes, we could probably get you ours. Yes, yes, yes we could. There's all the answer is yes. But I remember being in a conversation once with with a with a parent who was talking about this sort of inclusive program where where they incentivize students to go sit with other students during performances. And his parent was so thrilled with this.

00:09:32
And I was like, I don't know if they should be doing it for the incentive, you know, like it that that did not fit right in my mentality. Like like just be friends. Just like show them how to be friends and how to connect and not to not do it. To get not get something tangible out of it. Get something.

00:09:53
I don't know what I'm trying to say there, Rachel.

00:09:56
Maybe like it it shouldn't be transactional meaning like I'm not doing it just for the sake of doing it. I'm or I am doing it for the sake of doing it like just to connect with someone. And I think there's like a really great opportunity to frame that for students because they and and part of the beauty of the program like this is teaching students how to connect with someone who uses AAC for communication. And so I think there's a lot of really great potential ways to frame it. We you also could use one of our episodes, an AAC user episode, I feel like could be a good, like, you know, homework before the first day, like listen to this episode because I'm sure there's a lot of limiting beliefs about students with disabilities and individuals who use AAC for communication.

00:10:41
So I feel like that might be another good idea.

00:10:44
Yeah, I might also suggest if you have any sort of funding around this, reaching out to one of those AAC users and asking them to to to pay them for to come on to do a video conference to answer questions to these best these best buddies might have.

00:10:59
I love that, Chris. Yes, do that if you can. Wow, There's so many ideas here. Who knew we were just like, flowing?

00:11:06
Well, thank you, Holly, for writing here in our Patreon. Speaking of Patreon, back in the summer, I went to Alabama and I met well, I was like a guest presenter at this conference in Alabama. And actually that's foreshadowing. That's who we interviewed, some people from Alabama. That's the interview you're about to hear today.

00:11:25
But I wanted to give a special shout out to Sarah, who's a Patreon member who came up and introduced herself at in Alabama. And then we're going to talk about some other Patreon members.

00:11:33
Yes, we have so many Patreon members that I'm so excited to shout out. So big hello and thank you to Charlene Olga, Sandra Kay, Vicki and our newest 1, Lindsay. So thank you guys so much for being a Patreon supporter. You make this podcast possible. Without your support, we wouldn't be able to do the podcast.

00:11:55
And so we are so grateful for all of you guys who are a part of our Patreon. The patrons been going on for a couple years, at least now. Chris, right?

00:12:05
Yeah, for for sure. And we keep posting new content in there. So if you become a new Patreon member, you get access to the entire backlog of content. That's this bonus content that we have.

00:12:15
Yes. So if you're interested in becoming a Patreon member, we would be so, so excited. patreon.com\ talking with tech is how you get there. And thank you again to all of our Patreon supporters. We just are so, so grateful.

00:12:27
So with that, Rachel, let's take everyone into the interview where we talk about girl talk. Hey Rachel, guess what we're headed back to?

00:12:44
Ataa.

00:12:44
We've been doing this now for a couple years and it's always super fun time. It's a great experience and and so this this is a whole what a whole day together doing a pre conference.

00:12:53
I love our pre conference, Chris. It's just like such an amazing group every single year and every single year it's totally different. I feel like it's never the same day twice and just full of tons of fun activities and lots of engaging conversations. And by the end of it, we're all like BFFS and it's so much fun.

00:13:13
So if you're interested in attending, check us out at atia.org. Find the Pre conference link, Find Us & Up and we'll see you there. Welcome to the Talking With Tech podcast. My name is Chris Bouguet and today I'm joined with three different AIR individuals. The first one is Meredith Hankins, the second one is Morgan Payne and the third is Susan Lee.

00:13:43
Welcome to the Talking With Tech podcast everybody. But Meredith, how are you? Tell us. Tell us a little bit about who you are and what you do and we'll go round Robin at Meredith after you talk. Choose someone next and then we'll go from there.

00:13:54
All right. Sounds great. My name's Meredith Hankins. I'm a speech language pathologist at United Ability. I've been here about 17 years and I I'm an AAC specialist here.

00:14:04
I serve individuals who have complex communication needs, but it's pretty much our specialty here is that United Ability is the main place in in Alabama. We're located in Birmingham, AL, where individuals who have complex disabilities from birth to the lifespan can come and receive services in all ways of life, whether it's therapeutic intervention or preschool or job placement and training or medical care. So we have one place where we can offer that to individuals and their families so that they can get cohesive care throughout their lifespan.

00:14:47
Awesome, awesome. And Meredith, who would you like to introduce next?

00:14:51
I'm going to introduce Susan Lee to Y'all, and Susan is a teacher and a mom of a daughter with special needs. And she and our other guests, Morgan Payne, are both what I like to refer to from my tribe of moms as super users. So we're excited. They're they're forces in their daughter's life, empowering them both in communication.

00:15:14
Susan, will you tell us a little bit about who you are or what you do?

00:15:17
Sure. My name is Susan Lee. I live in Birmingham, AL. I always introduce myself as saying I'm a special education teacher by profession, but a special needs mom by privilege. And my daughter Alyssa is 15 years old.

00:15:31
She has Rett syndrome, so she is nonverbal and has the does not have any functional use of her hands. She is wheelchair bound and has multiple other medical needs including seizures and orthopaedic issues. But she enjoys communicating, she's very social being. She goes to her regular middle school and is the baby of the family because she's got two older brothers as well.

00:16:01
And Morgan, will you tell us a little bit about who you are and what you do?

00:16:04
Yes, I'm Morgan Payne and I have a 11 year old daughter with cerebral palsy named Sophie and I'm a stay at home mom right now. A previous life I was an Auditor CPA, but I've been home with Sophie since her birth. She's our only child. She is in fifth grade at our local elementary school and she uses an accent with eye gaze, so Sophie is in a wheelchair. She's spastic quad so she has limited use of her hands and her limbs also.

00:16:37
So Morgan, you mentioned your daughter uses an accent. Susan, what does the AEC tool of choice for your daughter?

00:16:45
Alyssa uses a Toby I-16. In the past she's had multiple different devices. All Toby, Dinovox. All Eye Gaze.

00:16:54
And so let's talk a little bit about how this interview came together. So I had the great fortune to come to the United Ability conference over the summer where Meredith and I had met in person. Meredith, I feel like you and I had floated in similar circles but had never actually met, at least to face. Is that fair?

00:17:10
That's that's more than fair. I think we have more friends in common than we realized when we started talking about people that we knew and had hung out with or visited with or whatever throughout the years. So we have not crossed paths because you had not come to get good BBQ. It's pretty much what it boiled down to. And then you did and.

00:17:31
Then I did, yeah.

00:17:32
And then you did and now you're better. So it's you're better for it so that there you go.

00:17:37
Well, I appreciate being invited to come and it was an amazing experience and part of it was meeting you and of course we started chatting and of course we have similar mindset around AAC. And one of the things you were talking about was this experience that you helped create called Girl talk. And I was like, can I be part of Girl talk? Can I be talk?

00:17:59
Do you want to make over? Yes. So it's an organic thing that kind of happened. I mean, people are like, oh, you came up with this idea. The idea just kind of came.

00:18:11
We have a large population of girls who have Rett syndrome in our area. We have a Doctor Who is in the Birmingham area who actually trained under Doctor Rhett. And so he has been very, very prominent in making sure that girls with Rett syndrome are accurately diagnosed. So we have several girls with Rett syndrome. Additionally, we have, we used to be United Cerebral Palsy at Greater Birmingham.

00:18:40
So we have a large population of individuals who have cerebral palsy and then just all sorts of other reasons that you might use a communication system and a lot of girls all of a sudden we had a lot of girls. So for a while we and I still do it. We have girl groups that we are guide groups. I have some guide groups that are pretty hilarious, but that we would get together and two or three kids work on a topic, work on some early literacy, work on turn taking and telling jokes and just the representation of getting to see other friends who have devices because they all go to different schools and not just one school in the area. The Birmingham area is is large and metropolitan in nature, so we ended up having a group, and particularly in the summer because there's not enough activities for our kids with special needs, particularly those who are more more dependent for AD LS.

00:19:40
OK. So we ended up doing a group and then after a while, I really got kind of tired of just sitting in the room with them and I wanted to go somewhere. And so we started planning some outings just to get ice cream just to go to the movies, you know. And we right before COVID, we all went together to see Frozen 2 and then the world shut down. And so our groups didn't kind of come along after that.

00:20:09
But the girls had such a great time being together and ordering their popcorn and doing all their things together and then we were able to talk about it for two or three weeks after about the plot and what we saw and what we did and things like that. So we planned 2 summers ago, we planned as activities that were weekly and and that was fun. We ended up, we went the ice cream shop. We went, oh gosh, we had a day where we did some adaptive painting. We had a week where we had a luau, just some different things that we did.

00:20:46
And the majority of these people that were coming were girls. And so no one was bound to like I have to come every week, people have summers with vacations and they go see grandparents. So they were able to float in and out. And we did not have any kind of goal set. We were just going to visit and we did not have any kind of thing other than let's talk and let's have fun.

00:21:12
So we didn't have to worry about what our outcomes were. We were just going to have a good time. And isn't that everyone's dream? As a therapist particularly is? I can really enjoy my caseload and my kids, but maybe I don't have to stress about, you know, what I got accomplished and something truly beautiful happened from all of that.

00:21:39
We had a couple of times where the local universities who have communication disorders programs would come and do an activity with our girls. And what ended up happening for them was also fairly magical, where they just got to visit and they visited with moms who were able to tell them. This is our story and this is what we need out of our future professionals. This is our story and this is what my daughter really needs out of her therapist. Then the the girls ended up talking so much.

00:22:18
We had one activity that we've done two years in a row with one of the local universities where it was a makeover day. And I remember Alyssa saying, well, what do you like to do using her quick fires? And I was like get it girl and just doing a back and forth communication where no one was sent down to say you need to say this this time. And it was just lovely. And the girls were proud.

00:22:44
Sophie was over here telling everyone all of the full house trivia that she does know and you know, showing everyone this is how my device works. And it was really beautiful having moms have time together that they don't get. You know, you think about the things that you do at a birthday party when your kid gets invited to a birthday party and you need to stay, the parties that you have to stay for and you visit with other moms and that's how you meet other people. Well, my families don't always get that. And they get to be together and have that time to be together.

00:23:23
And some days I would pull out of the parking lot and it was 3 hours after we were, you know, had started our session and they're still out in the parking lot talking about which wheelchair van accessories that are the most beneficial or whatever happens, I'm thinking this is the best thing ever. But the thing that the girls gain is the excitement of seeing someone else use a system that is like them or someone like them. And I crack up every time when I see next, craning to try to see somebody else's vocabulary or somebody reaching over and saying something on somebody else's device or something like that. Because there's just so much that we gain from seeing ourselves and other people.

00:24:10
So let me ask you some quick follow up questions here. Sure. First one that comes to mind is the way you sort of described that story was like kind of good, like, hey, I kind of I'm bored being in the same room, let's go to Frozen 2 together, right? And it sounds like you just, like, snapped your fingers and a bus showed up and you went to Frozen 2. But I'm sure it was more more logistical than that.

00:24:32
And then what? What did that look like? Like who went to Frozen 2? And then beyond, at what point did Susan and Morgan and other parents get involved in the in the community experience?

00:24:45
Well, a lot of these moms had been in Group. A lot of these girls had been in groups, and the moms had known each other, so they had been in groups in in conversation groups or therapy groups for a while. So they all had each other's cell phone numbers. And I do, if I remember correctly, y'all correct, because we all went. I think it was literally like, hey, let's go see Frozen 2 in three weeks when it comes out.

00:25:11
And they came up in one of your conversation groups. The girls, Yes. Sophie and Alyssa and Meredith were like, they were all in a group together and they started talking about the movie. I think Meredith was actually using a clip from Frozen.

00:25:22
Yes, as a.

00:25:23
Like a kind of as a STEM prompt to prompt some information. And then they all started talking about movies and the fact that it was coming out and the moms.

00:25:31
And then we watched.

00:25:32
Papers all go together because the girls would love it and it.

00:25:36
And then they watched the trailer together and we talked about what we thought might happen and things like that. And so there's a movie theater down the street and it would just been built. This was before COVID and it's still there. It made it through COVID and it has great accessibility and a flat parking lot and we were like we could go some, I mean our group's are at 4:00 in the afternoon and so we're like we could go in a few weeks. And so we did and it was just that just organically happened after COVID and after we were able to be together without precautions we start and people were just dying to be together at this point.

00:26:17
We were done with Zoom and we were done with anything remotely stale and so and no one was travelling quite as much at that point. So we did. We started those. We, I kind of planned out some things and it took a while for me to be thinking about like what are some things that my my girls with limited mobility and limited access to participate in? What are some logistics that we need to do to get that done?

00:26:52
And what are some things that are just simple to pull off yet motivating enough that you want to chat. And that's kind of what happened. All of that is we came up with the format, or I came up with the format. I said hey, y'all want to come tell everybody. And it was a smaller we had the most.

00:27:13
We had one time I think was 12, but we've had as few as one time I had. I had a whole thing planned where the jazz band for my daughter's high school, which is like nationally gotten awards, was going to play. And it was. Sophie just came that week and she rated the music on a scale of one to 10. But they had a great time.

00:27:35
I mean, she thought it was fabulous.

00:27:37
Sophie received a private concert, so we.

00:27:40
Received a private concert from like from from 15 kids that were really talented and so we had a great time. I forgot we did that and and the kids that were at that concert, I mean they were playing got to learn they were just some of them. A couple of those kids in that group have siblings with special needs and one of them does come to goal group. But the majority of those kids were just bowled over by she talks with her eyes and they loved it. And so it was just mutually beneficial and it just happened.

00:28:15
Now these children are all, these girls in particular are all involved in our outpatient program here at United Ability. So they've all received treatment, they've all been presented with some form of augmentative system that they utilize. They've all received their families, have received training, all of those things. But we wanted to give them a community outside of that. And that's really what we were looking at was what are the things that make us happy as individuals as we grow?

00:28:51
And it's friendship, it's connection. It's that that's what keeps us going as humans.

00:29:01
So Susan, let's start with you from a parent perspective. What has girl talk these experiences? What have they been like? What have they been like for you? What have they been like for your daughter?

00:29:12
Well, Alyssa has had a communication device since she was three and she's now 15. However, her apraxia is a significant limitation to her use. She has typical thoughts. She can communicate, she understands. The problem is trying to, you know, put all that together when she's having bad apraxia days or seizure days.

00:29:35
However, her communication is significantly better and more motivated when she's with other kids with communication devices. Her school therapist, who's been with her for three years now, finally got to see that when she took Alyssa over to actually mentor an elementary student. Our middle school is right next door to our elementary school. So they just walked across the parking lot to Mentor a kindergartner who has the same device as she does and the like, the communication, the speech language pathologist called me. She was like, Oh my gosh, she's been holding out on me.

00:30:10
And I said I've been telling you she prefers to communicate with people like her. And I think part of that is because they believe in her and they they understand, you know, her life. We all enjoy being around other people that are similar to us. So I I love seeing that because she they're kind of a whole different side of her comes out same kind of thing. A whole different side of her comes out when she's around speech language pathology students.

00:30:39
We've had numerous opportunities for her to kind of you know, be in in programs where we've got these SLP students learning from her and from other other kids with communication devices and she just kind of takes over and takes charge and tells them what's going on and and engages them in communication. So it's fun to watch her shine when she feels confident about where she is and who she's with from a parent perspective. Just like just like Meredith said, I love being around the other moms. We don't get enough time to just talk and moms and so we love that we're like here's our kids, you all go have fun. We're going to sit out here in the hall and and chit chat and share resources, so.

00:31:23
Susan, I just want to comment on that, that phenomenon of changing how you communicate when you're around different groups of people. Because I think it's something many speech therapists, many parents, many people in general don't really think about. But it is sort of a a thing that happens universally across humans is that when I'm with my, I grew up with a group of friends that I'm still friends with today, right? When I'm with these guys, we get together every summer. I'm different than when I'm in a professional setting, than when I'm going out to dinner with my wife, than when I'm hanging out with my own kids.

00:31:57
Like, I I it's called code switching. I you switch from one experience to another and I and my communication changes. Like I don't talk the same way when I'm recording a podcast as I do. When this podcast recording ends and I go out and I chat with my wife, it's going to be a totally, you know, the words will be similar but the the communication will be different. And I feel like that's an opportunity, that girl talk and just opportunities that being around your daughter, being around other people who use AAC or being able to show off the AAC in a different way gives her an opportunity to communicate in a different way that most people don't think about.

00:32:37
Absolutely, absolutely. And I love that opportunity. And she has. I mean, she has told us with her device that she prefers to be with other kids like her, that she's happiest around them. That's that.

00:32:50
And I mean that just makes my heart happy that we have those opportunities. Because I know, I know, we take it for granted because I go to camps or other other places and I hear from other parents, what do you mean your daughter gets to hang out with, you know, 15 other girls like her? And so I know we, we do take it for granted because we've had wonderful pathologists who have just made this work for us. But it's something that we're, we're happy and thrilled to have.

00:33:20
When there's less, I'm so sorry, Chris. When there's less commutative pressure, the apraxia just doesn't kick in as mad either. When? When it's a motivating topic and when there's not someone that they know, when you are working with them and and so you know that is what is so much better is that you hear so much natural speech in that regard.

00:33:47
Yeah, she would much rather have a talk. She would rather communicate than be quizzed and drilled and practiced to death. So that's it's absolutely true that the apraxia is significantly better.

00:33:58
When she's just.

00:33:59
Talking so.

00:34:01
Using a merit you'd be happy to know that this is some of the advice we give on this podcast and we're certainly when we're coaching and and and training other educators is one of the first things you could do is go and watch someone else work with someone who's using AAC and just count how many questions they're being asked. And just in that block of time that could be immediately or is how can we ask less questions because it's usually just people can't see my hand but I'm I'm shouting questions at you with my hand you know it's rapid fire so so that's something we could immediately change and it's such a great experience we'll come back to a Meredith for the the 'cause. I do want to come back to it, but I love just meant tease it. Now I want to hear more about what the the the students get to experience right. That's a big aha Homan.

00:34:50
But Morgan, before we move on to to that, let's hear about your perspective and you from from you as a parent and from your child. What girl talk has been to you and your family.

00:35:00
OK, well, just like when we go to Disney World, for example, like I always say, that's the best therapy for Sophie, her using her device out in places like that. You know, just telling us how happy she is and requesting to ride this ride or telling us she's tired. And I always come back and I tell Meredith, Meredith I was like, we need to do a camp at Disney. Like it was the best therapy we could have ever.

00:35:22
Had.

00:35:23
So we've talked about that for years. We're trying to make that happen one day.

00:35:27
I'll be there.

00:35:28
That's right.

00:35:29
But Meredith's vision of seeing like, our girls out in the community, like I feel like this is all her, you know, her seeing our girls out and wanting to see them use their device and be successful, and then Sophie having her friends and seeing them talk like she does, I mean.

00:35:48
Awesome. And how about you Morgan? Like Susan mentioned, it was a connecting with other parents. Has that been something you found that girl talk Has, has, has helped with or not so much?

00:35:58
No, it's huge. These moms that I have met, that I mean their family at this point, basically, I mean.

00:36:09
Yes, it's it's on that same note. It's fun because once we start networking and sharing resources like Morgan and I have been together two weeks lately, two weekends lately at different camping activities and we've got another one coming up in a couple of weeks down at the Dauphin Island Sealab. And then we're constantly like finding and then two weeks from that we've got the rare disease camp. So we start networking and so then we spend more and more time together because our girls are spending more and more time together. So we truly do kind of take therapy outside of the clinic, so.

00:36:52
In contemporary terms. So we heard a little bit about how it's how it started and now where it is. Meredith, are you still organizing them or Susan and Morgan, like did you organize the Dolphin excursion? What's? How does it work now?

00:37:08
So.

00:37:09
Go ahead.

00:37:10
I'm so sorry. OK, so we were the first year I kind of went rogue and so maybe you don't put that on the podcast, but we we made some things happen and I in my schedule to be able to do that the next year. We got some grant funding to tap to pay for my time to be able to to be covered with the planning and execution of girl talk and it was a a three month summer grant, so which we hope to to get renewed for next summer. OK. So that was what that was.

00:37:49
Susan is what she might want to consider in her next life is the planning and organizing of preteen summers. If my daughters had the summers that Alyssa has, they wouldn't want to live with me anymore. So she's really skilled in finding anything that is just amazing for kids with special needs. So we had simple activities that were a Friday afternoon and us hanging out. But I I if someone would let me go to Dauphin Island C lab with them, I would go.

00:38:28
Gotcha. So you're not actually going to? I'm not.

00:38:31
I'm not this. That's all Susan. She's amazing and so you know we just all are along to the ride with Susan I planned girl talk was what we wanted for our girls to get to be together and an organized thing but Susan has and and networks parents into all kinds of different activities in the state and so.

00:38:54
Why stop there, right? Why do you stop?

00:38:56
Ordering these these. Yeah. So.

00:38:58
Susan, tell us a little bit more about that that that event planning what, what advice would you give people who want to get something like this started?

00:39:08
So I guess the the key thing is to not let anything limit your child. So it all really started with the fact that we're a big Scouting family. I was a Girl Scout, my husband was the Scout. We were all Scouts. And so we knew when we had kids we wanted them to be involved in Scouts.

00:39:25
So Alyssa had two older brothers. They were both Eagle Scouts. So when Alyssa came along, it was just natural that she was going to be a Girl Scout. Now, Rett syndrome was not necessarily on the list of acceptable disabilities and yet we just said we're going to make this work. So it started with Girl Scouts.

00:39:43
That was a huge success and she's been a part of a troop since she was in kindergarten and is still with those same girls now in 9th grade and has her bronze award and silver award and has her sights on her gold award. So that is kind of where it started. And seeing her love for the outdoors, she is the happiest when she's outdoors. And so we just started looking for other camps. Found a communication camp over in Mississippi.

00:40:10
When that and got Sophie involved in that one. And so they came and then all of a sudden it lost funding and I just knew, wait a minute, we can't just not do this camp because again that that group of parents, we've been together for six summers for a week and I said we got to do something. So we got another camp for communications started over in Georgia with this a similar goal as the one in Mississippi that we wanted for our kids to have a camp experience where communication was a primary focus of that, but we wanted to also engage speech language pathology masters students as their counselors. So we got in, you know, in touch with several of the universities over in Georgia who have programs and got some of their professors on board. We now have a solid Board of directors and we are now an official 5O1C3 camp speak, SPEAK and we just had our second summer camp this.

00:41:11
It's a Labor Day weekend camp and so it's great. But again, Alyssa enjoyed that camp experience so much. I was like, well, we need more. So we got involved in a camp through our Children's Hospital. That's a weekend camp That was for, actually, it was for Magic Moments recipients.

00:41:31
So Alyssa had a magic moment similar to Make a Wish here in Alabama, Sophie as well. And so they did a weekend every every summer. And I said, well, we've got this weekend. What other weekends do you have? And they had one for asthma and one for CP and one for autism.

00:41:49
There was nothing for those kids that fall through the cracks. So I said, well, let's start a rare disease camp. So they said great. So we jumped on board and started a rare disease weekend and then from that found out from a network with another family who had been to the Dauphin Island Sealab camp. So that is the Dauphin Island Sealab that works on marine science.

00:42:08
They do every two years they do us a weekend camp for students with special needs and bring in their marine biologists and everything's accessible. So I called up Morgan and said, hey, you got to bring Sophie, this is great. So it it's very word of mouth, but I'm constantly looking for ways to keep our kids outdoors, communicating, having fun and getting experiences that most people think they would not be able to enjoy because of their physical limitations. And when we've got one up at camp for camp for courageous kids in Kentucky where you have a Rett syndrome camp that we dreamed of last year and got it going and got with one of our Rett syndrome organizations and have a RET camp this coming weekend up in Kentucky. So our fall and our summer stay very busy with camps and activities because I know for my daughter, if we're at home, she's just going to sleep.

00:43:00
She's not engaged. She doesn't, she doesn't enjoy TV movies. She wants to be going and doing so. That's what we do.

00:43:08
Amazing, Susan. So let me ask, you mentioned it just briefly. You said mostly word of mouth. There are probably people listening to this right right now going well. I want to get involved with one of those.

00:43:20
So there's one question which I which I asked is like if I wanted to get something like that started, don't let anything stop, you just start it. But then the second Ray, that's what you said. The second one is I want to get involved. I maybe don't have the bandwidth right now to create something, but I want to be involved in something that's already created. How do I ferret something like that out?

00:43:40
How do I search a lot of word of mouth? How else do you market where? What would you advise? Would you give people to go find something like this?

00:43:47
So check with your local Children's Hospital, Check with your local therapists. Meredith knows a lot of the things Alyssa does. So if a parent comes and says, hey, what are what's out there, what can we do all the time? She's texting me saying, hey, can I give this parent your contact information? I'm like, sure.

00:44:04
So check with your therapist, check with your children's hospitals, check with doctors, and then start talking to other parents. I don't care if you have to corner them in car line, you know, you don't know who they are, but their child is in a wheelchair and you see them with a communication device like stand there and you know, I mean just kind of stalk them and say hey, what What do you all do? Do you all do anything fun in the summers or for cancer activities? Because it truly is networking. And that's what Morgan and I and all the other moms do is we just network and somebody hears of something and they come back and share it with everybody.

00:44:38
So the more you talk to parents in your situation, the more you'll find out. Also just doing Google searches. I mean, I can't tell you the number of hours after our Mississippi camp shut down. I just, I sat on Google searching communication camps, camp for kids with devices, camps for kids who don't speak, you know all these things and came up pretty short on the on the on the close end of that or camps, lots of camps that had restrictions. Your child had to be able to put together a complete sentence.

00:45:11
Alyssa Lee will never be able to put together a complete sentence because of her apraxia. She can absolutely get her message clear to you. She can spell with flip books and write sentences and paragraphs. It takes a while. But writing in a complete sentence using her device will never happen.

00:45:28
So she was automatically dejected from that camp or this camp. They had to be able to feed themselves and go to the bathroom independently. Well, she's toilet trained, but I have to lift her on the toilet. So I I I was looking there. I found a few opportunities.

00:45:42
So look online, talk to people, especially your therapists and doctors, and then if there's nothing there, start something.

00:45:51
Morgan, what advice do you have?

00:45:53
Yeah, well, I'm just fortunate to live in the community that I live in and half married than Susan. I mean, honestly, so that networking with parents and with your therapist and just talking to people like Susan Sprite, talking to your doctors and your therapists and then other moms that you've connected with, it's been huge and.

00:46:16
As a therapist, you have to be willing to see that you need to be present for the people that you serve outside of that therapy session, outside of that goal and that benchmark. Because when I I know and I'm a mom I have daughters and and so I know that when my girls, my my personal daughters are happy is when they have friends, they have connection and they're busy. And I I I know what makes them happy is their church youth group. It's the band it's you know, hanging out with friends at the house it's you know things like that And I want to make and I know that that's how they gain social goals as individuals and grow. And So what I want for the girls, the people, the individuals that I serve, is to make sure that they have the same opportunities in the community that the children that the children at my house get to do.

00:47:16
And so Sophie and Alyssa are the same age as my daughters. And so some of those things, my daughter has come on, my youngest has come on because she is a peer model and she can do those kind of things. But both of my daughters were raised in AC and so they are pretty darn good facilitators. So that's part of it too. But really it's looking at that whole person and what that whole person needs.

00:47:46
And at the end of the day, I don't really care if we talk about Saturn unless you really like planets. But I mean, if you only know the planetarium, we can totally do that. But you know, not very accessible a lot of times, but whatever. So but what I do want to talk about is the things that we think about, the things that you talk about with your friends and see how that works. So that's what we're doing.

00:48:11
Meredith, we teased it earlier. Can you tell us a little bit more about some of the aha moments you've seen some of the college students have?

00:48:18
Oh, so good.

00:48:19
And or how you arranged that because I feel like that's a that's another opportunity out there for people is that I teach in the university I'm looking for authentic opportunities for the kids that I that I service in a pre service model. So can you tell us a little bit about about that?

00:48:37
The United ability has had A and before we were United Ability we were not in several policy of greater Birmingham. And so we have had a strong commitment to student training, to graduate clinician training in all disciplines forever. And so, I mean, I came here as a graduate student and walked in the door and thought, I'll never get to work in a place as cool as this. And I've been here for 17 years now and it still gives. Oh, I still have chills.

00:49:06
Wow. Anyway, so that is what's amazing about this place, is that the commitment that we have made to make sure that we have clinicians all over the state of Alabama in the Southeast that understand individuals with complex needs. And that's not just, that's not just physical therapy, that's not just speech therapy, it's in the area of physical therapy, occupational therapy, teacher training, all of those kind of things, social work training, all of that nurses. So we are a clinical site for multiple individuals and we know that, you know, I always feel good when a when a family comes to me and sees me and they're like, oh, my speech therapist is so and so and I'm like, oh, thank God, they were my student. And so they know what I I know they know my the they know the philosophy, they have some pedagogy, they have all of those things.

00:50:02
We're also very fortunate that we are within driving distance of three major universities that have communication disorders programs, the University of Alabama, Stanford University and the University of Montevallo. So we have those. We also get clinician placements from South Alabama, from Auburn University. So we get, we have the opportunity to be able to serve multiple students and within that network we know clinical coordinators and those clinical coordinators, that's a small tribe of individuals as well. And so we often speak to their AAC classes, do those kind of things.

00:50:40
So favours solids, you know that kind of stuff. So they're always looking for opportunities for their students to have more hands on. There's never enough clinical supervisors. Have you heard about that, Chris? So sure.

00:50:59
So we it was an easy, it was an easy sell. I called friends and I said, hey, how would you guys like to do a makeover day for my girl talk group? How would you guys like to do a game night for my girl, for my girl talk group with some adaptive games, things like that. And it ended up being the what the students refer to as their most favorite time that summer. And we interviewed for student placements for our summer, for our spring placements, for students, for their externships.

00:51:38
Because it's a full time five day replacement, we only want students who are very committed to AAC. So we had so many applicants this past year. It was overwhelming because they had done the girl talk program and they had seen our kids and they were like, I want to be there with these people.

00:51:57
I want in.

00:51:58
I want in. I want in. If, if they're having this much fun every day, I want to do it. And and my kids on my caseload are so used to I get a new student. This, you know, every semester because we're always training someone that they pretty much know how to take care of.

00:52:17
My students too. They know, you know, I'll say listen, they don't know where your words are. You're going to have to show them, you know, things like that and it works out great. But as far as those unstructured moments, particularly moms like Morgan and Susan and more I have for for every Morgan and Susan I have, even I have more that are just as open and ready to train that next that next crop of of students. I was able to say this is your opportunity to make sure that these students know what real life is really like.

00:52:56
And it's not just cool technology, Life is hard. Tell us how you got there. Tell us what you need. What are the hardest things that you do? What are the best things that you do?

00:53:07
What are the best things about your kid? And so that they see them as an individual and as a family versus that kid on my caseload, or that kid with the eye gaze system, or that kid that uses lamp or whatever, and instead saying this is what it took to get us here. This is why we're here is because we had cohesive care, which is something that's really hard. You can't bill for it and you really have a rough time that schools coordinating for it. But we have very we we really strive here to have very cohesive you know interdisciplinary care here.

00:53:52
And so things that that made the difference And so and then I was able to talk to students about these was what made the difference was we had moms that aren't scared of technology that know that they can't break their system. That we have moms that never miss an opportunity to model that are better facilitators than me. That we have caregivers that figure out what do I do about the glare when we use this talker outside instead of saying we're just not going to use it outside and those kind of things. And so seeing that motivates students to want to do better. Graduate clinicians want to do better.

00:54:37
It also motivates other parents. So you see parents that have really had trouble integrating their system into their daily life and they meet another family who has similar or even more challenges and they're doing it. They're like, Dang, I got to get it up and, you know, do this kind of like when I see somebody at the gym and I'm like, oh, I need to do better than that. So it's it's just what community brings to us is it fortifies us, it challenges us, it pushes us forward and it and it gives us comfort. And so we need as humans all this things.

00:55:15
Susan, we'll start with you. I here's maybe a final question or maybe second to final question that I want to ask that is there might be people listening to this podcast that are just starting on their AEC journey there. They like Meredith just mentioned not sure how to integrate things not sure who their, who their network is yet. What advice would you give to somebody who's just starting out?

00:55:42
So one of my favorite cliches, I'm a cliche person, but one of my favorite cliches is it's a marathon, not a Sprint, and you're not going to know everything about your device the second you get it in your hands. You can't learn a whole device or a whole language system over a weekend, Alyssa. Like I said, Alyssa's had hers for 13 years and I'm still learning lots of things. We've changed language systems as she's grown, so every time we start a new language system I'm starting over just like she is. So I guess my my biggest thing is anything is better than nothing and you have to start somewhere to get further.

00:56:24
So just start. Just start. Use your your reps for whatever device, your PRC reps or your Toby Dinovox reps in the area. Use them. Use your therapist.

00:56:34
Ask for more training. Constantly be asking. Constantly be modeling and it's OK all the time. We'll we'll find a new word in 8th grade or 9th grade curriculum that I have no clue where it is or if it's even on her device. And I'll say, hey Alyssa, I have no clue where that word is.

00:56:51
Let me help you find it. And we find it together. So it's, you know, it's a learning process for you as a parent as well as your child. And I model that as well, just like I do for my students. I told my students I don't know everything, let they'll ask me a question.

00:57:05
I'm like, well, let's research that. And so it's the same thing for my own child. I I don't pretend to know everything because I don't know everything. So it's good for them to see me, you know, struggling as well and say hey, we're just going to have to find this or we're going to need to program this in because that's, you know, language you need. So just start somewhere and and don't feel like you have to know it all immediately, because you won't.

00:57:30
Give yourself some grace, Morgan.

00:57:33
The the biggest leap in Sophie's communication that we ever saw was when Sophie had an adaptive stroller for the first five years of her life. And when she finally received her first wheelchair, we were able, we were able to mount her device to her wheelchair. And so using her device in the community and it being with her at all times, even going for like a walk in our neighborhood and talking about trees in the sky and modeling and using the device in in all the different settings of daily life, that's when Sophie's communication really, really took off. So I would tell parents to to use the device like don't just bring it home and set it in a corner. Like you're going to have to use it.

00:58:15
You're going to have to model, use, and then also don't be afraid to to learn his device and to get in there and program. And you can't mess it up. And if you do mess it up, hopefully you've got a speech therapist in your life like Meredith who can fix it. But don't be afraid to get in there and, you know, learn it because your child is not going to learn their communication device if you do not know it. That's that's what I feel, truly.

00:58:44
Quite frankly, it it's so funny that Morgan's saying I'll call Meredith and I'm like, I actually call you, oh, that's what's so funny is I was like you're over here acting like I know something and you're over here teaching all the parents how to put Roku in their accent. And yes, and you know, doing all the the things where, you know, I created this user area this week and this is what I did. And you know and and you know, Morgan's the one that really is such this model for parents where anything that is pop culture relevant that child's going to have it in our talker, full house characters, Disney princesses. But these are the things that other kids talk about and that was what ended up mattering. So, I mean, you know, those are the things that matter to Sophie is that she wants to talk about Bunked on the Disney Channel.

00:59:45
And that's what my daughter Lucy talks about is, you know, the other night she said, oh, we watched 5 episodes of Good Luck Charlie over there and sleepover. I didn't let her watch five episodes in a row. Good enough. Love Charlie That I would say on a podcast anyway, So.

01:00:02
No judgement here, Meredith.

01:00:03
No judgement, no judgement. But, and immediately I thought, oh, Sophie loves Good Luck Charlie, you know, just, you know, because we've talked about it, I think. Wasn't it 1 Summer that Sophie and I wrote Bunked fan fiction as a as an activity That was really hilarious. That was I don't have.

01:00:23
It so she had a big crush on one of the characters and so they talked about Xander every week.

01:00:28
But we wrote, we wrote sentences about Xander and the things that he did and I said that we were writing fan fiction and so it was fabulous. So, you know, whatever works she was working on syntax, who cares? But it it ended up, you know, the things that matter, I mean, So what are we going to talk about with our friends? We're going to talk about whatever happened on the television show that we are all watching or the book that we're reading or things like that. So that's powerful.

01:01:05
So having relevant fringe that is contemporary, that applies to your interests but also applies to your age. So I've done Star Wars units with kids and things like that to make sure that they know about the things that other 10 year olds talk about. You know, stuff like that.

01:01:24
One of Alyssa's favorite pages is her teen talk page.

01:01:27
Yes, and it's.

01:01:28
Got all the sayings that teenagers and her friends from school and her Girl Scout friends and her.

01:01:33
Teenage brothers.

01:01:34
Are the ones that tell me, hey you need to get rid of this one. We don't say that anymore. Oh, you need to put this one on there. There was a new one we put on at communication can't can't speak last weekend. My my 19 year old said mom we don't ever say that anymore.

01:01:48
You need to get rid of that one. You're but she doesn't have this one on there. And I said, well, first you have to tell us what that means And so he explained what the saying meant. But, but like Meredith said, keeping that relevant information and those relevant phrases and and. It's.

01:02:03
Great. She loves it. We've been doing a Taylor, we have a a chat group that we're doing now that we're just focusing on really the art of conversation and we'll pick like a a relevant, like contemporary like singer. Like right now we're doing Taylor Swift and we're talking about eras and Oh my gosh, we could go see eras at the movie theatre. When it comes out, we go see the concert because I'm very excited about this anyway.

01:02:27
So we so we were doing all of that the other day and I think Alyssa said no cat and I was just like lost it and and it was the timing of it was really quite appropriate as well And so it's just it's just fabulous. I mean, who wouldn't want to do this job? In my opinion, I get to talk about and use slang. Why would I not want to do this all day?

01:02:59
All right. Here's my final question. And it is. When are we going to Disney and can I come?

01:03:05
OK, I'm sure they'll find a way for us to get it paid for at some point in time. Where's Susan? Just go find a grant.

01:03:12
We need a grant. I haven't found one that wipes all the specifications that yes, we've we've been saying for three years, our girls love Disney and what better communication than at Disney World and we would have to have our therapist along. So. So, Chris, yeah, when we get that grant figured out, you're you're in, you're in. But why?

01:03:31
Can't we have a Disney camp? I mean, why can't we do that? You're the best accessibility. I mean, there's nobody better.

01:03:40
Customer service is great, I mean.

01:03:41
Service is great, we.

01:03:42
Got it. We got Disney down South. My other two camp. My other three camps now are going solid, so, so I'll start working on Disney camp.

01:03:51
Yeah, you you get on that, I say.

01:03:54
Unfortunate I am. I have Susan.

01:03:56
Yes, but. But you have your own force, Morgan Payne. So don't.

01:04:00
Morgan, you're helping me with Disney. You just don't know it yet.

01:04:03
OK, I'm there. I do.

01:04:05
I do think that things like that, like, I mean other high school kids and junior and middle school kids get shared experiences like trips like that. You know, I mean, I was a band mom. Susan was a band mom. I mean, I when those children travel to, when those students travel together on trips, they have shared memories and experiences. There's no reason that our kids shouldn't have those opportunities If we can't, if we can figure it out for them.

01:04:34
Those are the things that, you know, my daughter's band director, she he always says we're going to build them a memory and there's no reason why we shouldn't want to do the same, build them a memory. I remember when we went to go do blank, when we went to get, we went and we painted and we had Popsicles and we just hung out. Or I remember when we all went and we dressed up in eras outfits and went to the movies and we are so doing it. And of course you can fly out and go to eras with let's do it. So I mean, doing those kind of things, that's what matters guys, I mean.

01:05:18
Yeah, it is what matters it building those memories, having that sort of life experience. And then it's also what people talk about. They don't talk about boring, mundane things in a therapy room, right? You can have a focus target. It may be instruction there for a minimum amount of time, but then go out and experience the world.

01:05:38
Yes, yes.

01:05:40
Well, and I would say, as a teacher, it doesn't matter if my students can do something in a classroom or in a therapy room. It doesn't matter if Alyssa can communicate with her therapist in a clinic. What matters is, can she take it out in the community and be functional with it? Can she generalize the information and the knowledge and the skills she's learned in the community? Because as much as I wish Meredith or or you know, Lynn or any of our other, we're going to come with us forever.

01:06:06
They're not going to be right beside her for the rest of her life. And so we, you know, it's our job as teachers, as therapists to help our students generalize that information into the settings where they will live the rest of their life. And I think Girl Talk helps us do that.

01:06:23
I feel like dropping the mic right there, Susan. That was a great way to do.

01:06:27
It's real good.

01:06:28
Yeah, well, thank you all for taking your time to be here today and recording on this podcast. It sounds like you have an amazing connected network there of great support for for your children, for the professionals, and for the families all together. So thank you so much for sharing.

01:06:48
Absolutely. Thank you.

01:06:49
Chris, we appreciate you.

01:06:51
Chris, thanks everybody.

01:06:53
Thanks.