Episode 312: Tiffany Joseph (Part 1): Educating and Supporting AAC Users as a Part-Time AAC User

This week, we present Part 1 of Rachel’s interview with the amazing Tiffany Joseph (@nigh.functioning.autism)! Tiffany is an autistic mother of three neurodivergent teens, as well as an educator, advocate, and a part-time AAC User with inconsistent verbal speech.  She explains more about situations when verbal speech becomes difficult, the ways that writing text out before hand helps her, strategies she uses when she has trouble with verbal speech, and more!

Before the interview, Chris and Rachel discuss a listener question from a parent of a teen who wants more authentic inclusion for her child, but she feels like encouraging more authentic inclusion is not very achievable. Chris and Rachel discuss the difficulty living in a world that isn’t universally designed, how we can use IEP accommodations to support UDL, cultivating belonging through inclusion, and more!

Key ideas this week:

🔑 People will point out when someone doesn’t talk as much, and it often feels uncomfortable for that person. Not everyone talks all the time, but there is often an unspoken judgement when people are described as “not talking as much.” Sometimes it feels to Tiffany that she always has to be doing something extra, like talking, for others to feel happy.

🔑 Tiffany is a dyspraxic multi modal communicator with inconsistent motor plans, including with inconsistent verbal speech. Difficulty with motor plans can include routine activities, like brushing her teeth. Some people have entire bodies like this, while other people have only parts of their bodies with these kinds of motor difficulties. You can get really anxious in social situations when your speech and motor plans work inconsistently.

🔑 Be thoughtful about saving a student’s energy for learning & communicating, and try not to overdo repetitive daily tasks you know they can do. There isn’t an unlimited well of energy available, so we should be thoughtful with what we are asking someone to do. For example, don’t want to focus on handwriting so much that it limits progress on spontaneous communication.

Transcript of the Episode

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

00:00:09
Welcome to Talking with Tech. I'm your host, Rachel Madel, joined, as always by Chris Bugaj.

00:00:12
Hey, Chris.

00:00:13
Hi, Rachel. So, Rachel, I want to say something real quick. I want to thank you because a lot of people don't know how we divvy up things behind the scenes. And one of the responsibilities that we never even talked about it, in fact, we've never really talked about whose responsibility is what. We just sort of drifted toward things.

00:00:30
And one of the responsibilities that you sort of taken the mantle for is checking the talkingwithtechmail.com dot. Every so often you check there, answer some emails again, you forward them to me. Chris. This one you might want to address, which I'm so thankful for. I take other responsibilities, but that one is squarely, for whatever reason, it landed with you.

00:00:52
And so I'm just appreciative of it.

00:00:54
Aw, thanks, Chris. It's funny how we like, didn't talk about who's doing what, but we somehow, like, adopted our roles. What a beautiful partnership.

00:01:06
For sure. For sure. So with that said, you went through some emails and we got some. So should we do some listener email maybe? Maybe one that jumps out at you?

00:01:16
Yes.

00:01:17
So this message says, hi, Chris and Rachel. I'm a parent of a teen located in Maryland. We are looking for help with authentic inclusive practices by schools. How can we help facilitate this process? All we see are excellent resources around, but none put into practice.

00:01:32
We know authentic inclusion will tremendously help our kiddos, so we even move states for that. But it seems far from achievable. We're wondering if there's any chance for some help. Many thanks for reading this message.

00:01:47
So this is a huge topic, clearly, and one I'm passionate about. Right. I built an entire career of trying to change the school experience so it becomes more inclusive. And the first question that I would invite this parent to be thinking about is, what do you mean by authentic inclusive practices? If I were to be in a room of 20 people and ask those 20 people to define authentic inclusive practices, I think I'd get maybe 20 different answers.

00:02:24
In fact, have a recent experience where I'm working with a team of people where we're trying to define it, you know, and there's, you know, chat, GPT's definition, clearly we went there. We're like not quite right, you know, and then, well, I think it should be this and I think it should be that. So, well, it doesn't have to be perfect, but that is a great place to start, is. What do you mean by that? And then the next thing I would say is, how would you.

00:02:50
What would it look like? You know, what would you. How would you describe it if you could not just put it in a paragraph, but if you were. If you were giving a presentation on it, what would a description of what authentic inclusive practices look like if your child is in fourth grade, what would a fourth grade experience look like if you're. And maybe you're like, Chris, it wouldn't be grade levels.

00:03:14
We wouldn't even have grade levels. And an authentic inclusive experience that's already there, that could be really brainstorming of a redesign of the educational experience. So what it's gotta start there is, what would you want to see happen? What do you think it means to you?

00:03:32
I think the other thing that might help when we're thinking about that question is because I think that question comes, and this question that we just got comes from parents who are looking at what's happening and realizing it's not inclusive. Right. And so it's like, it's looking at the situations where you wish there was more inclusive practices. And so I think that can really help kind of answer that question, too. And like you said, kind of getting more granular about it because it's a huge kind of topic and undertaking.

00:04:08
We know we're not able to change things immediately overnight, but what can we do to start chipping away at making, you know, things more inclusive for individuals with disabilities? And I think that that hopefully framing can help. Like what? What are you seeing right now that you're like, no, this is not what I want for my child.

00:04:35
In writing the. The book with Mike Murata and Beth Poss and Karen Janowski, inclusive learning 365, we had to ask, well, what do we mean by inclusive practices? I mean, it's in the title of the book. And what we landed on a simple definition for was the fight against exclusion, or, I guess, other people, if you want to soften it, the struggle against exclusion. But I like the idea of fight because it does seem like such a strong, powerful word.

00:05:06
Right. And so we asked this question in some of our trainings, in some of our presentations, and, um, we ask people to then say, okay, when you hear someone, and we do it in ours, like, you hear someone say a limiting belief, what are some words you use to reframe it? And one I love. I don't, I forget who said this, in what training, but someone said, oh, so you want to exclude this kid. Who else do you want to exclude?

00:05:31
Like, what? What? And that's a great, again, reframing of it. Like, well, I'm not trying to exclude anybody, but the system itself doesn't help, meaning special education itself seems to say, well, we have this. This thing, general ed, and then we have this different thing, special ed, and we design general ed for general audiences.

00:05:58
And if it's not, if someone doesn't fit into that general audience, then they go over into the special audience, and everyone sort of seems to be okay with that. When I say everyone, I mean, most like, yeah, right. Including people in special education. Like, maybe I get some value out of that. I got a degree in it.

00:06:18
I'm invested in that, this whole other professional experience. And so the way the system is set up doesn't really lend itself to inclusive practices. And so that is why it's taking so long to change. Right. And why I can hear people say, people with disabilities say, but we can't just, like, get rid of special ed.

00:06:45
That protects us. Right. Do you understand what would happen if that didn't exist? So, in fact, even in the Kelly Coleman episode that we did, Kelly Coleman mentions how she reached out to Judy Heumann. Judy Heumann being a advocate for disability rights.

00:07:03
And there's a great documentary called Crip camp that if you watch that, she's in that. In that. And that's how I got to know her. You know, some of her work is through that, that documentary. Point being, she's like, I have to advocate for special bathrooms just so I can go to the bathroom.

00:07:24
Right. No one's just designing it that way. And so at one point, can we get to a place where education is just designed that way? It feels like because of the structure of general ed and special ed, we have a long way to go.

00:07:40
Yeah. I mean, I think that framing really, like, it's tricky, because if we're not living in a world where things are universally designed, then we have to have special air quotes. Right? Special accommodations and designs for people with disabilities. And so it's kind of like this necessary evil.

00:08:03
But the fact that we have to say, oh, here's general and here's special. Like, that framing just inherently has, you know, this problem where we're in this vicious cycle and we can't get out of it to truly get to authentic inclusion.

00:08:19
Yeah. And that's. There's the legalities around it. So a general ed teacher is not obligated to design their experience under the principles of universal design for learning. There are some laws that sort of support it.

00:08:36
Like the every student succeeds act has universal design for learning. In it. But there's no force a teacher to do that where accommodations that is forced under idea. Right. And so you can say, well, so that sort of sets up the mentality for the educators supporting the kids.

00:08:56
Well, no, I'm meeting their needs. I've got the accommodations. I've given them the accommodations that are outlined under IEP. I'm doing my job well. Yes.

00:09:05
Yes, you are. But could we do it even more efficiently and could we get all the kids that have not crossed the human made line of eligible versus ineligible? Could recognize that that's a human made line. Did the kids have the same abilities three weeks before they were found eligible and they were not meeting their needs because we were not providing them the accommodations they needed? How much further behind, not that that needs to be even a thing like, it's not comparison to other people, but how much potential was lost because we weren't providing the structure in a way that it was designed with authentic inclusion in mind.

00:09:53
The other thing, Chris, I want to mention here, which has been a learning moment for me as I've kind of gone down the path of inclusive practices and this idea of inclusion, and I think it's one of the most important things to think about, is that it's really not about just having students with disabilities alongside of their peers in a general ed classroom. It's really about how do we cultivate belonging? And I feel like this idea of belonging really helps us look at design for learning situations where we have the opportunities to cultivate that. And I think that that's kind of oftentimes the missing piece. It's like, well, we put him in the general ed math class every day for 30 minutes, and I'm like, but he's sitting in the back of the room, and if you're in the back of the room, not next to all of your peers and not being included with, you know, the same kind of thought out levels of, you know, support, then, like, you're not going to feel like you belong.

00:11:01
So, like, just because you're in the classroom doesn't mean that you feel like you belong in the classroom and you're right next to your peers having an authentic experience with them. So it's like, we obviously have a far way to go. But the reason I bring up belonging, not only I think it's an important thing for people to think about, but for this, these parents that sent us this message, you know, how can we start with something that we see where maybe it feels like our child's not feeling like they belong and being included. And how can we take one small situation and start to kind of cultivate that, have conversations? Cause I think oftentimes it's a lack of education about what that looks like.

00:11:44
We have to support people in understanding what could this look like? And I think when we can spark ideas for people, like, oh, okay, you're right. Maybe I shouldn't have have that student in the back of the classroom. Like, maybe I should have him right next to his peers. What would that look like?

00:12:01
You know, you start kind of helping people brainstorm what they could do differently.

00:12:07
Oh, man, I have so much to say here. Okay, so real quick. Here's real quick. Here's a long winded answer. One thing you can be looking at is reversing it.

00:12:20
Okay, we. If we have this sort of experience where there's just students with disabilities, how could we bring students without disabilities into that experience? And then. So some people would call that reverse inclusion, and to me, it's just inclusion. I don't know where this term reverse inclusion doesn't make sense to me.

00:12:38
Like, it's just inclusion, but that could be a way to do it. The second thing I want to say about that is looking at the most frequently used accommodations and saying, how can we use that accommodation to design the experience for everybody? Why not give that accommodation to everybody? So that's a second, really simple step I think, that people can make. So, for instance, if we were talking about the most frequently used accommodations, you could just ask, like, what are in your school or your school district or even in a particular class, what accommodations are used most frequently?

00:13:14
And chances are, you know, spoiler alert here, Rachel. It's audio supports. Right? Like read aloud, but read aloud with using text to speech, audiobooks. Put all that in one category of audio supports.

00:13:33
Second most popular, potentially, is visual supports.

00:13:38
I was gonna say that one. I was like, visual support since every single one of the ieps.

00:13:43
Exactly. So why don't we have visual supports that are for everyone? And then third, I think, is small group testing. But let's take that testing part of it out and just say small group. How can we maximize small group instruction rather than whole group instruction?

00:13:59
I mean, that's where the sensory becomes overloaded. When we're trying to have one person talk to a group of 28 people or more in the room with a butt, you know, that in a room that is not really environmentally set up that way. So what if we had more small group instruction? That sort of, though I think those are probably the three most frequently used and then you could go from there, right. Oh, and by the way, Rachel, just.

00:14:27
Just if we're going to be talking about that, can you think of a resource that provides audio, provides visual, and provides audio and visual in a consistent layout, maybe like a grid per se? Can you think of something like that?

00:14:47
Maybe an AAC system? Comes to the top of my mind, Chris.

00:14:52
Exactly. Which is why AAC, instead of thinking of it as a tier three, only some kids get it. How can we make it more inclusive? As if it's. If it's on the walls, if it's in the hallways, if it's.

00:15:05
If it's everywhere, if it's up on our interactive whiteboard, then. And we do some instruction for all the kids about what it is. It helps everyone, hurts no one.

00:15:15
The last thing I'll say, Chris, is that, you know, again, I'm thinking through the parent lens, because this is a big struggle of parents who want their child to be included, and they're pushing for this in IEP meetings and on, you know, in their school situations. And I kind of see the back end of that because I also am pushing for the things for my students and have to kind of sit down with parents and strategize on, you know, how could we really push the needle and move the needle for this? And also in the selection, this family moved out of state to try to better support their child with inclusion. And that's a big question, is, like, where do I send my child to school? I'm willing to move.

00:16:00
I'm willing to do whatever it takes. And I think that that can be really tricky. I think there's specific questions that you can ask as you're kind of looking at different schools to figure out, like, is there a culture of inclusion here? And I think that that is, like, one of the most important things that I share with families as they're going through this process is, like, ask specific questions about inclusion. What does it look like?

00:16:27
And if there is a culture of inclusion, people will very easily and readily answer that question. And if they struggle, then you know that it's not at the top of their mind, it's not at, you know, a focal point of their ethos. And so it, like, is a huge kind of. It's a huge piece of information for families as they're kind of going through that process.

00:16:51
I love that. I love that. I think a lot of people will answer, like, because they think they're being inclusive. Like, yeah, we meet everyone's accommodations. Yeah, that's not really what I'm talking about.

00:17:02
Right. The other thing that's hard there. I mean, I feel for these parents. Maybe they came to another state because they knew. They asked those questions.

00:17:10
I did that at the elementary school, but then my kid moves on to middle school, and that's a different school with a different people, with a different culture, and then they're going to be there for three to four years, and then they go on to high school, and that's a different. Right. And then this is kind of the last point that I wanted to make about this, is that the bench is not deep. So you, when you're trying to help educators adopt these inclusive practices, come at it from a supportive point of view, because as a parent, you're feeling the pressure of time. Right.

00:17:42
Well, I've only got three years. Right. Yeah. So I need them to do this now. Right now.

00:17:47
So I'm going to tell you what to do. What you're going to do is do this, and I'm going to write it in a very strong way so that, you know, I'm serious about it. And what that tends to do is push people deeper. Their feet get deeper into the sand and they'll push back against you. So, although that's your gut feeling, and, man, I know this because I've done it, the better route is how can I support you?

00:18:13
What can I do to help you, to help you save you time for yourself? How can I help you design stuff so you don't have to redo it every year? What can I do to help you save time so you don't have to look up stupid junk on teachers, pay teachers. Like. Like, if you approach it like, I'm going to try and help you save time, then it also helps my own kid.

00:18:42
That's how the needle can move, because it's got to come from a supportive lens. Because when I say that the bench is not deep, so many people are just leaving education, and there's not a large group of educators waiting to come back and take their place. So you might have a culture that you have fostered with inclusion, authentic inclusion in mind, and if those people leave, then you got to start that culture all over again.

00:19:08
Yeah, I know. That's one of the biggest challenges in.

00:19:11
The work that we do, is just.

00:19:12
Like, the turnover, and it's all about the people at the end of the day, you know, and that's what makes it. Oh, you're gonna say something.

00:19:20
No, please continue. But I do have one more idea.

00:19:22
Okay. We're so jazzed about this. Banjo.

00:19:25
They were like, I have one more.

00:19:25
And then I have one more, and then I love it. You know, at the end of the day, it just comes down to the people. And oftentimes families are always asking me, like, what school? What school should I go to? Like, what school should I send?

00:19:38
Do you know any good schools? I'm like, here's the problem. Yes. Like, I do know some schools that I've had good experiences with, but the moment that teacher leaves the classroom or, you know, the SLP that was supporting that classroom leaves or, you know, they have new paraprofessionals, it's like it just always comes back to the people. And so people change.

00:20:01
So, really, to have long lasting and longstanding change needs to kind of come from the top down, meaning the top of a school. And the administration and the organization, they prioritize educating people around inclusive practices.

00:20:20
That's kind of what we're talking about today.

00:20:23
And I think that there's ways that you can kind of start thinking through that lens in the work that you do and kind of advocating on behalf of that. You know, if you are an SLP or a teacher, you know, how can you start having conversations with your administration about that?

00:20:38
I have strategy. I have a strategy, and then I finish up with a story. The strategy that if you're. So Rachel specifically invited administrators to be thinking about this. So administrators, here's the invitation.

00:20:50
Imagine. Just do this thought experiment with us. Imagine tomorrow. Special ed disappeared. The concept of it disappeared.

00:20:58
The personnel stayed the same. You still had the same people. They still had the same skill set, but the concept of special education disappeared. The kids are the same. Their abilities are the same, but the concept of special education disappeared.

00:21:11
What would happen? Would your teachers, what it would they, how would they adapt? How would that change? How would their planning change? What would they do with that personnel?

00:21:23
What would you do differently with that personnel if suddenly that concept disappeared? So I invite you to think about that, because that, I think, could lead you to more authentic inclusive practices. And the last thing I want to end is with a story. Rachel, so many, many years ago, I had the opportunity to travel to a different state. It was somewhere out west, maybe Utah or Idaho.

00:21:44
I can't remember which one, but somewhere in there. And I was up on stage talking about inclusive practices like this. And at the end, you know, everyone fanned out and they went to their conference because I was like, maybe the keynote. And this dad comes up to me and he says, hey, you know what you're talking about. It's really important.

00:22:01
And I was like, oh, good, I believe it is, too. He goes, let me tell you a quick story. My daughter has many needs. And we went looking for schools, and very much like this, this parent who wrote us, and I went to a school, and they would show me around. They give me a tour, and they would say, you know, this is how your daughter could be, how we can meet her needs.

00:22:29
And then I would go to some schools, and they would say, you know, we're not sure we can meet your daughter's needs. And I'd go places, and I'd hear these different stories from different administrators until I found this last administrator who said, I don't want your child into my school. I need your child in my school. We want to build all of our culture around how to support a child with the abilities like yours. We want to plan so that everyone can be included.

00:23:09
We want to teach the other kids how. How they can include other people. So stop looking. This is your place. And I was like, you know, I'm well enough listening to this dad's story that he found the place, you know?

00:23:25
And so if it happened for him, it can happen for other people, too. And as an administrator, don't you want to be that administrator?

00:23:32
I feel like I'm gonna cry. I really, like, I'm welling up thinking about that, and it's, like, so true. It's like, can we create a world where everyone feels like they belong and they're included? And I feel like it starts with our youth and it starts in schools. And I think administrators have a lot.

00:23:52
Of power over that.

00:23:54
And, man, I wish that we knew who that administrator was and we could have them on the podcast.

00:24:02
So tell us about our interview today. Rachel.

00:24:05
Chris, I am so excited.

00:24:08
I love all of our interviews, but.

00:24:10
This one was extra special for me. Tiffany Joseph is a autistic adult who uses multimodal communication, and that includes some AAC sign language, mouth words. Tiffany has been a huge part of my own growth and learning when it comes to, you know, AAC, the clinical.

00:24:34
Work that I do.

00:24:35
I followed her on social media. Her handle is I functioning autism, and she has quite a big following. And I've seen her present. I saw her at AShA, actually, and I am so excited to share this interview because I really. I saw Tiffany go through the experience of shifting between using mouthwords and also using AAC.

00:25:02
And we, of course, talk all about that experience experience. But for me to kind of see that transition and to hear her obviously share about it was so powerful. And so I'm really eager to share this episode. It was a long conversation, so it's definitely gonna be a two parter. But I just I think that we need to have more conversations with adults who are using AAC part time because it just really showcases the absolute necessity of AAC for some of our students.

00:25:39
Even though they have verbal speech, they don't always have access to verbal speech, and it might not be their preferred method of communication. And so I think that talking to part time AAC users like Tiffany just super powerful and I'm so excited to share this episode.

00:26:07
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00:26:29
We'd so very much appreciate it. Now let's get back into the episode.

00:26:43
Welcome to talking with tech. I'm your host Rachel Madel, joined today by Tiffany Joseph. Tiffany, I'm so excited to have you here. Can you just start off by kind of introducing yourself and sharing with our listeners who you are and what you do?

00:26:57
Hi, I'm TJ or Tiffany, creator of the social media platforms knife functioning autism. I am a single mother of three neurodivergent teens. We live and work in and around Maryland and Virginia, primarily in the Washington, DC area. I am autistic, diagnosed in my late teens. However, I was diagnosed with other conditions when I was in elementary school like central auditory processing disorder and ADHD.

00:27:26
I also have had epilepsy and OCD since I was a child. I am hard of hearing as well. As such, I use many ways to communicate like ASL, mouth words, high tech AAC, and other ways depending on how accessible my speech and memory is to me. At the moment, I work in special education or more preferred accessible education as a par educator for elementary school as well as a communication teacher partner to mostly teen and young adult autistic non speakers. My passion in the disability space is communication and education rights for people of all disabilities.

00:28:05
I specifically love teaching how to implement high tech speech generating devices in schools and homes. I always say I would have access to my own speech if I had text based or high tech speech generating strategies earlier in my life. I proudly sit on the board for Lilly's Voice, a non profit organization that provides high tech speech generating devices for of all disabilities under age 18 in the United States. I am also a member of the Maryland Developmental Disabilities Council, which is a federally funded national organization in every state that sets the disability culture, policy and laws in that state.

00:28:44
Tiffany, I'm so excited to have you here. I have been following you for sure on social media for a while. We've connected on social media, and then I had the pleasure of meeting you at ASHA. I attended your presentation and it was by far my favorite at ASHA, and I felt like it got such a.

00:29:04
Lot of good feedback.

00:29:05
Everyone I was talking to was like, yes, it was amazing. And so I'm excited. I was like, Tiffany, like, you have to come on the podcast. And it was funny. During your session, I was literally looking at the emails.

00:29:15
I was like, I know that I had sent her an email. So this has been kind of a long time coming, and I'm just excited.

00:29:22
Because you have such a unique, lived experience.

00:29:26
You share that you use lots of modalities of communication as an autistic adult, and I think that that is really important for people to hear and really understand because it's sometimes hard for some of our students who do have access to verbal speech, sometimes to give them access to some type of modality of communication that might feel more comfortable or more accessible in certain moments. So I think that it's so great to talk to you, and I'm really excited. Can you share a little bit about your different types of communication? You know, you experience kind of shifting in and out of different modalities. You know, what, what does that look like when you transition between, you know, say, sign language and mouth words and then, you know, deciding to use high tech AAC?

00:30:20
I'm going to answer that first and then going to use my AAC for another product answer. Okay, so you asked, like, what does it look like? So now I have a job where I have to work 4 hours a day, and I generally speak for most of that part of the day. It's so much easier to do any of these when I am comfortable, when I know the people. So it takes a while.

00:31:05
In the beginning, I did use having my high tech device a lot more.

00:31:13
But.

00:31:21
So this is an example. Let me get my other. The voice is going to change because I'm using a different app.

00:31:47
Okay.

00:31:54
Actually, it might not change that much because I have set up a personal voice on my Apple device.

00:32:05
Oh, that's a great, that's a great hack. I like that.

00:32:10
Yes.

00:32:28
It'S so hard to speak when I am not comfortable. I think research needs to be done on he connection between speech and a litany of causes th. And make it just stop working.

00:32:42
Okay. I wrote, it's just so hard to speak when I'm not comfortable. Right. But there's no research on why that happens. What just makes it just, you know.

00:33:03
So there are many causes to that. I don't know. I don't know what's happening now. Like, in that. That's the thing is when you're little, you don't know any.

00:33:19
You think everybody does that. And then over time, you start seeing that people do not. Like, there are some people that can just talk and talk and talk, and it's amazing. I don't relate, but. So, yeah, sometimes that can happen for me.

00:33:47
A lot of it has to do with seizures. So I have epilepsy, and I feel like before or after a seizure, I mean, my seizures are no more than 30 seconds. They're like, maybe 15 seconds, usually, or less. But the effects, if I can feel that little 15 seconds coming on, my whole body feels weird. I don't have any.

00:34:22
I don't even have words in my brain at that time, there wouldn't be any ability to speak. Nothing. And then afterward, I'm just too exhausted. Like, it just feels like talking seems like a big chore, like I would. It's something that you want to procrastinate doing because it's a chore.

00:34:49
Yeah. I wonder how many of the students that we work with feel similarly, and they have a bunch of adults around them saying, like, oh, like, you know, I wish they would just, like, engage more in this lesson or answer questions when I ask them. And, you know, they just don't want to do it. Or they're, you know, even worse, they're lazy. Right.

00:35:08
And I'm putting that in air.

00:35:08
I hear that a lot.

00:35:10
Yeah.

00:35:10
When it comes to speech. When I was younger, I heard that a lot. But even yesterday, somebody I know very well said something. Oh, you never speak when you're here. That's why nobody knows you.

00:35:26
Nobody asked me anything either. But anyway, yeah, people do point out and not kindly when people are too quiet.

00:35:39
Right.

00:35:39
And it almost seems like that's a microaggression. Right? Like, that's like, something that does not make someone feel good and.

00:35:48
Yeah.

00:35:48
Why is it necessary that somebody is spurting out noise out of their mouth all day long? I don't.

00:35:59
Yeah. Why is that the standard that, you know, apparently everyone's aspiring to? It's a good point. And it's also like, there's a judgment there. Right.

00:36:08
It's like, well, I'm judging that you're not contributing, that you're not, you know, sharing, and that probably doesn't feel good either.

00:36:15
Yes, I used to say, and I still do, actually. It's kind of, like, sad. I don't want to cry, but, like, just how I am, like, makes other people feel lonely. You know, it's like I have to always be constantly giving of myself through speech for them not to be lonely. And.

00:36:46
Yeah, it's like, it's never enough. Just have to be trying to do this more to make people happy.

00:36:54
Right, right. And it also feels like for someone where that already feels exhausting, to kind of feel like even that's not enough, you know, probably feels even more daunting. And just like, I'm sure, like, in some situations where you're already feeling exhausted and overwhelmed, it's just like, shut down. Right. Like, just like.

00:37:16
Okay. Like, just like, clam up. And I think that's just a natural reaction to feeling tired and exhausted and overwhelmed.

00:37:25
Yeah. And. But that shutdown is more. Is more like change in the bank of. You're too quiet.

00:37:36
Yeah.

00:37:38
So, you know, I think this is such a beautiful. You're doing such a beautiful job of sharing your experience, and I feel like that is so powerful for people to hear. Let's talk about the motor component. One of the things that you mentioned at AShA and really centered a lot of your presentation on was this idea of motor planning. And I think that's the common denominator.

00:38:03
When we're thinking about the students that we serve who might have complex communication needs, there's always some element of motor planning challenges, which is why verbal speech is either hard to come by or unintelligible. And so can you speak a little bit to this idea of motor planning and how it challenges our students and the impact on the AAC?

00:38:48
I think above all, motor challenges are why AAC adoption can be hard, but are also why not taking motor problems into account can be traumatizing. Eyesight generally requires a good, fine motor control in being able to scan and track. This is true as well for pointing, hand eye coordination, and many other ways. Our language and intelligence is trapped behind so many ways to demonstrate our understanding. So when we are looking at someone trying to use AAC, but not quote unquote, getting it, we usually are failing to meet that person where they are motorically.

00:39:22
Until we can teach them motor skills to do it themselves, those ways are through AAC tablets, pointing, typing, writing or many of the above and more skills to truly know what lies behind the motor system. At times a very faulty motor system and brain body disconnect. I can explain it like this even better. It's like a car that is extremely unreliable but you have no choice but to drive it. This car you have been given is more or less your car for life.

00:39:51
So imagine you are driving this car. You know how to work cars and inside you are an experienced driver. But you were given a car that when you press on the gas and drive it doesn't do anything. Sometimes it just doesn't go forward, no matter how hard you press on the gas pedal. Or maybe it lags and takes off way faster than you thought once the gas finally goes into the engine or you hit the brake pedal, but instead it just lurches forward and takes off.

00:40:19
Going as fast as possible. You push the brakes down even harder, but this time it reverses very fast. Instead you hit the brakes again and it just does donuts and the wheel turns into a motor loop and no amount of trying moves the steering wheel in the correct way. Thats what its like having a dyspraxic body inside your body is an experienced driver, but the movements are one of an unreliable, barely working car. Some people have parts of their bodies that work like this, some people have entire bodies like this.

00:40:52
Dysregulation is also the default due to anxiety. Imagine if you had to drive everywhere in that type of car, wouldnt you be anxious? It could work some days and some days it does not. If it could get stuck turning one moment and the next it could be inside the grocery store.

00:41:11
I really love that analogy. I think that so often when we don't know why we're not seeing progress or we're seeing a student say the same thing over and over again, or not initiate for whatever reason, I feel like people just go to they're not motivated or they don't care or they're non compliant air quotes. Right? And it's just like, I love thinking about this idea of this unreliable car because, and also I love that you shared the anxiety of like, I gotta get to work today, but I don't know if my car is going to cooperate. And I feel like that just resonated so much with me thinking through this lens of motor planning and this inconsistency or unreliability.

00:41:59
And then it's like this vicious cycle where it's like I'm not sure if my car is going to work. I need it to work. And then I'm having anxiety about that, which means that I'm potentially getting dysregulated, which means it might work even less. And so it's just like this vicious cycle that you can get in. And I just.

00:42:19
I feel like that's so important for our listeners to really hear and understand is that, you know, unfortunately, a lot of our students have bodies that while they want them to work and initiate and communicate and do all the things, it just is not always possible. And I feel like you're the first person that I've heard with a lived experience share that in a way that I think is so easy to understand. So thank you for sharing that. And I think that that is such a missing piece for these cases where, you know, students aren't making progress or they, again, are non compliant. All these things that we hear, and it's just like, can we.

00:42:58
Can we go back to this idea of motor planning?

00:43:01
Yes. They. They oftentimes say they, as in the students, the students are not understanding what communication device is even for, or they don't know cause and effect. But, you know, you can't. You have to show you no cause and effect through your motor system.

00:43:33
Have to show interest even in things through your motor system. You know, that's how the world reads. If you're interested in something or not, it's always through your motor system, right? Like, yeah, I. If I'm not smiling and if I'm walking away from some music, most people will say, oh, that person does not like the music.

00:44:04
But really, I process music by moving. So I'm. That's actually how I show that I'm liking something, but my motor system can't show the type of interest that other people can. Right. So, you know, then.

00:44:29
Now people assume terrible things.

00:44:35
I like that you shared this idea of the expectation on demonstrating that you understand that you like something. Like, everything is really based on motor and those motor components. And, you know, how many of our students who, you know, we put AAC devices in front of, um, I'm thinking about one student on my caseload right now. Like, she kind of says the same word over and over again, and I don't think it's that she's stimming. I think that she's just in this motor planning loop where she just, like, this is what my finger's doing, and this is the first motor plan I learned.

00:45:12
I feel like that's a common thing with AAC, is that, like, the first motor plan that a student learns is like, that one is repeated, and then you have to know, like, just from neurology, like, the more it's repeated, the stronger the neural network becomes. And then I feel like it's hard to get out of that loop, right. Because it's my most practiced motor plan when I have AAC device in front of me. And so it's like, you know how frustrating it must feel for that individual to have ideas to want to share, but to just have a body that's just not cooperating.

00:45:44
Yeah. It's like, I don't know how many people are good dancers, but I am a terrible dancer. I can't learn choreography, but I realize now that I'm older that that's not just a me thing. That's, like, even neurotypical people can't get the choreography right or they see something and they have to practice it for a while. Well, you know, it's kind of like that.

00:46:26
Like, you feel like your body's gonna do one move, and it's like, wow. No, that. I tried to be like that dancer, but it did not come out like that.

00:46:38
Yeah.

00:46:38
Yeah, like that.

00:46:41
I can relate to that in some ways. Like, I was a cheerleader way back in the day, and I feel like I have good rhythm with dancing, but, like, when it came to trying to follow a routine, I always struggled with that.

00:46:54
I was just like, it would take.

00:46:55
Me so long to learn it, and everyone else was so far past, I would have to stay after it, have to do all this extra work to actually just learn the routine. And I just think that people have certain strengths and they also have certain challenges. But, yeah, it's like that. That's a skill, and it is something that, you know, is something to practice. But I also feel like we kind of have.

00:47:22
We're born with. With innate abilities and challenges, and it's like, that's just a challenge for me. Like, it. I could keep practicing, but it just, like, is still a challenge. And so it's like, you know, figuring out ways that we can help support and strengthen certain things.

00:47:38
I think that that's the beauty of, you know, neuroplasticity but also kind of working within our system. And it sounds like you've kind of starting to realize, like, okay, there's some things that just are a challenge for me. And from your perspective, it was like, it's, you know, neuro, neurotypical people also struggle with this specific thing. And so I'm sure it's just been this kind of learning about yourself as you've kind of grown and, you know, especially doing all the work that you do in this field, kind of processing, like, where do I fit in and how do I kind of explain my experience?

00:48:14
Yes, I agree. Like, learning from neurotypical people and their experiences, I feel like ours are just, like degrees. The extent is different, but there are some things that neurotypical people, you know, would understand because they go through it, like, not being able to dance, I have found, is almost universal. And if you extrapolate that to this being, like, all your body movements, like brushing your teeth, you can do that. Or, you know, just trying to get down the stairs or trying to press a button on an a c device, and you can't even get your body to you go to push it, and, you know, you end up pushing the device away like you don't want it.

00:49:26
Mm hmm.

00:49:27
Yeah.

00:49:28
So, you know, we've kind of shared a little bit about. I think the first step for people is understanding and having true compassion for the motor planning challenges of the students that we work with. Is there anything else that we can do to kind of help support that motor planning? Anything that you found in your own work in this field that really helps support that motor piece for individuals?

00:49:55
Yes. So as far as in the school environment, I would say save the students energy for learning and communicating, not have them, you know, do all the tasks. Like, you have to put your book bag up. You have to do this, you know, like, all those things are difficult already. And I feel like it's the coordination it would take sometimes will expend them for, you know, more other tasks.

00:50:52
It's not like a unlimited well of energy when you have motor planning issues. It's a much more limited. Well than most other kids outside those classroom walls.

00:51:11
I feel like that's such a good point because I feel like even when I think about my own experienced, like, we don't have unlimited willpower, we don't have unlimited energy. And so taking into consideration the things we are asking students to do, the thing that kind of came up as you were sharing that was this idea of handwriting and how, like, the motor challenges of handwriting really decrease a student's ability sometimes to fully write to the extent that they can think and share ideas. And so I feel like that's an example. It's like, a very tangible example of how, like, what are we asking of students? And this is.

00:51:51
This comes up when I'm in IEP meetings. I'm like, we can work on the motor components of handwriting, but just know that we likely aren't going to be getting the full extent and breadth and complexity of what the student has to write. And that's where technology, the typing and word prediction, and there's tools that, you know, that we have at our disposal. So that came up as like this idea of motor planning. It's like if a student is like spending so much energy trying to write their name with a pencil on the top of a worksheet, you know, by the time they actually get to the worksheet, like, are we able, like, have we already, like, depleted our resources, you know, for the thing that really matters?

00:52:31
And so what I'm hearing you say is be really strategic and thoughtful about the things that you're asking students to do, being cognizant that they don't have unlimited resources from a motor standpoint.

00:52:44
Yes, yes, that's exactly what I'm saying. Because I feel like disabled students have to work harder than their non disabled peers. I think I'm going to write and.

00:53:08
Then that's totally fine.

00:53:52
You know what else needs research? What? Why? If I can write it, then I can speak it, but before it's written, I can't. I, it stops.

00:54:04
I know, it's interesting. It's reminding me of Chloe Rothschild came on. She's an autistic part time AAC user and she shared this idea of when she's sits on a few boards and when she's at a board meeting, she's like, I can't. She's like, I always use AAC because I can't formulate in a way that's cohesive and as articulate and sophisticated. She's able to fully express herself in those scenarios.

00:54:38
She's like, if I had to rely on just like mouth words, then, like, it would be really basic and really simple. And I just think that's fascinating and.

00:54:47
There are people who don't need that.

00:54:50
I know, I know.

00:54:51
I can't relate to that. Yeah, that's fascinating.

00:54:57
Yeah, yeah.

00:54:58
Okay, I'm going to change the voice because. Nevermind. Okay, so I have my icloud storage full, so I don't have my personal voice on my tablet. Right? Yeah, but it is on this.

00:55:27
And I just realized I typed it twice just to use my personal voice.

00:55:35
It's okay. I think it's important to kind of showcase this. Like, this is what it looks like.

00:55:40
Yes. Okay, I'm going to read the original.

00:55:57
Okay.

00:55:58
I was just saying it is hard for adults, like when we're at home or in class or whatever, to talk and talk and talk and talk to them because, you know, we'll have to do it forever. And the kids will. They just, you know, they're kids. They just will take all day. So we end up doing things ourselves instead of trying to talk to them over and over again.

00:56:29
And I was just saying it's ironic because that's in reverse, but it's similar to that. We will take the easy way out to do things like, why can't we help our kids do that? And it also teaches them how to advocate for themselves. You know, as long as you're telling them why you're doing it for them, teaches them to advocate for themselves.

00:56:59
I love that. And I'm thinking about something that always kind of comes to me when I'm doing an observation or sometimes when I'm, you know, seeing another SLP in their therapy session. And I'm like, if we know that it's a skill that the student has, then we don't need to keep practicing it over and over again. Meaning, like, let's move on to something else. And like you said, if we give the explanation to a student, like, hey, I know you know how to put your backpack up, but I also know that that's, you know, takes a lot of energy for you.

00:57:35
You've shown me that you know how to do it, so I'm helping you in this situation. Put your backpack up so we can focus on, you know, going to find our seat or whatever the thing is. And I feel like I love. I've never thought to kind of explain to students that and be very explicit in, you know, just having that conversation. Like, I'm doing this for you, to help you so that you can do this thing that we're practicing together.

00:58:01
And again, not only, you know, when we're thinking about motor planning, but I also work with a lot of students that have a lot of complex medical things going on and complex bodies. And it's like, for those students, too, it's like you just got out of the hospital. It's always this balancing act of wanting our students to learn and having that expectation and not doing everything for them because we're practicing skills, but also knowing when we need to step in and help support our students because of the experiences that they, you know, are having with their bodies, with, you know, other kind of things outside of them. And so I love that distinction. Explaining to students, like, why you're helping and to take some of that burden off, I think makes a lot of sense.

00:58:47
Yeah. I think that these are little tiny conversations that speaking kids get to have all day long, you know, like, I don't want to. Can you take this book back for me, mom? You know, I don't. It's too heavy.

00:59:03
You know, our non speakers don't get to have those conversations. They don't get to ask. So we got to have more explicit things. We're telling them why we're doing for them and what we're doing and why.

00:59:20
Yeah, I think also what's coming to me right now is this idea of attunement. So, like, can I attune to the student that's in front of me and, like, anticipate kind of some of their needs? Because, as you mentioned, you know, with a student who is neurotypical and just like you said, is like, I don't.

00:59:39
Want to hold it.

00:59:39
I'm tired. It's like, our students might not have the language yet to communicate that. And even if they do have the language, the actual act of communicating, it takes effort and energy. Right. In situations where maybe they don't have that resource.

00:59:54
And so I think it makes a lot of sense to just really attune to our learners and. And really think compassionately about their experience. And I think educators generally want to do the right thing. They want to help support students. They get into the field for a good purpose.

01:00:12
But I think that we sometimes forget that we have a human being in front of us and to really think through the lens of what are they experiencing in this moment. And I'm just so grateful for this interview with you because I feel like you're helping us understand how to think through these moments and what our students are experiencing in any given moment.