SPEAKER_01 0:14

Hey guys, I'm Hannah Ponsford, and welcome back to our kind of normal. So, this is an episode I've been really excited to share for a long time. In today's episode, I interviewed Erin and Ethan. Erin is one of my youngest sisters, Ella's best friends, and I've known her for years. So Erin is non-speaking, and she's been working really hard over the last few years to learn how to communicate through spelling. She's been learning how to spell with AAC, which is augmentative and alternative communication. And we'll get more into what that entails in the episode. But AAC is a method that's been around for a long time, but it's new to Erin. And while she communicates through AAC with spelling, there are multiple different communication methods that one can use within that technology. Before Erin learned how to spell, her options for communication were pretty limited between a few words and cues. But learning this new skill has opened up a whole new world for her where she can communicate her thoughts and help people get to know who she really is. So since Erin started spelling, she's been able to reveal just how truly creative and insightful she is and how completely aware she is of the world around her. I've known Erin for over a decade, and watching this whole journey has been so amazing because I feel like I'm finally getting to get to know her and who she is. This interview also impacted me in a lot of different ways. For one, it's the first time I've gotten to actively sit down and communicate with Erin through her spelling. And I was just blown away. I was wondering at times during the interview if I was engaging properly and if I was doing everything right. And I had to remind myself it's better to try and, you know, maybe you're learning as you go a little bit, but it's better to do that than just completely miss out on learning about a person because you don't know the right way to communicate with them. So it was just interesting in that moment because I've talked about that a little bit on here, and then I caught myself kind of in that thought pattern, and I was like, wow, I mean, think of what we miss out on if we don't take the time to actually just learn something new. This episode also impacted me on a bit more of a personal and emotional level. This is an episode with all adults. So we do get into some heavier topics that we haven't really talked about in my past episodes. And I was really grateful to Aaron for bringing this up and bringing it into the conversation because they are really real feelings and thoughts for a lot of people and their families in this community. And I really appreciated Ethan too for how open and honest he was as he talked about his experiences. I learned so much about Aaron through this interview, and I feel so lucky to be getting to know the real her. I hope you enjoy listening.

SPEAKER_02 2:53

Well, thanks so much, you guys, for being here. Um, Ethan, can you go ahead and introduce you guys for us?

SPEAKER_09 2:59

Yeah. So my name is Ethan Kelly, and the this is my sister, um, Erin Kelly. Um, she's the older one out of the two of us, um, surprisingly. So she's 26, almost 27, and I'm 22, almost 23.

SPEAKER_02 3:14

Awesome. Thank you. Yeah, and you guys are a longtime family friends of mine. Um, so it's been cool to kind of like have our journeys together and be able to, you know, just have like families that relate to each other a little bit. And we have Lindsay here, Erin's aide. Can you introduce yourself, Lindsay, and just tell us about AC and Erin's journey with it? Absolutely. Um, my name's Lindsay Goodrich. Um, I'm an assisted technology specialist. I guess Erin and I have been working together for it's been over two years now, maybe close to three. I'd have to check. I'm bad with dates, but she's been on this journey for a while. Um and actually, Ethan was a really big part of her progressing in her journey. Um, Erin would get frustrated. Um, in the beginning of this process, a lot of times you start with known words just to practice. And so everyone knows the word we're working on. And Erin would often stop before she'd finished a word. And Ethan one day was like, Well, she knows everyone knows what the word is. Why would she do it? So that really helped Erin um helped us ask bigger questions and helped her kind of move into more open-ended communication um in a place where we had kind of plateaued with with just getting frustrated with the the average progress of it. So um the process itself is very communicated. If you could go on chatting, you go for it. Um the process is very individualized. I'm Erin's very um smiley a lot of the time, most of the time. Um I think is a big, a big thing for Erin. She struggles to to look directly at the keys a lot. And so we've worked a lot on um not just using her motor memory and her um what I call finger scanning, where she'll she'll just move her fingers across the keys um and be able to somehow, even if she's laughing so hard, she's crying, still find the right line she's looking for. Case of why are you doing it right now? Um, but in general, we want, you know, a focused, a focused body, a focused mind. Um, and that's my part in this role for Erin is just being her communication regulation partner um and helping her get what's in her mind out for the rest of us to hear. Good mistakes. Awesome. Hey. Um, can you explain a little bit about AAC, the technology, and just kind of how it works? Sure. So in this process, we start with a lot of low-tech options that might be a laminated letterboard or a letter stencil, where there's actually like a traditional stencil that you would think of where the letters are cutouts, and you use a pencil to poke through them. Um again, just a very individualized process. Erin um progressed pretty quickly to the keyboard, but still can utilize a lot of those other tools. You're on end. Um, and so now she's using a wireless keyboard. We've put yellow stickers on it just to increase the contrast because that makes it a little bit easier for her to see um whether she's using her peripheral or her straightforward vision, just makes the letters stand out a little bit more. And it's connected to an iPad with a communication application called Proloquoil for Text, where as she types, it speaks the words that she types. Um, we've learned in the process that too much auditory feedback can be tricky for Erin. And so you can set it to speak every letter. Right now, Erin has it set to speak every word. So she'll get through a letter first, and then when she hits space, it'll read the word that she spelled.

SPEAKER_05 6:45

Awesome. Yeah. You want to finish it over? Yeah, I want to hear what she what you've typed here. Good morning. Good morning.

SPEAKER_02 7:09

Can you hear that? Yeah, yeah. Good morning. So glad you're here, Erin. This is so cool. Ethan, I'd love to hear a bit of kind of your side of the story of Aaron's progress with ANC, AAC, and just how that's been learning what she's capable of, because you guys have just learned so much about her in the last couple years, and it's so amazing.

SPEAKER_09 7:34

Um I guess to start, uh growing up, like so for most of my life, Erin was pretty non-verbal. Like she would say hi and bye, and there was like yeses and no's and stuff like that. Um, hi there. Um, but I always felt like as a little brother, right? Like I always felt like she understood more than necessarily what we were giving her credit for, right? So whether it was like her butting in on a hug or getting some attention that she wanted, or like anything, right? Like not wanting to eat a food, wanting cookies, like I always felt like she there was more there than like what people were giving her credit for. And for a while, I was kind of just like brushed off, and like it was like, well, no, like she understands some stuff, but like there's other things that like she just doesn't totally get, which is which is totally true. Um but this AEC thing, um, it really kind of took off for her and like her finding her own voice. Um and so like I had heard a little bit about it, but I was off at school. Um, I was in college, so I didn't I wasn't really there for the first kind of like part of it, but I knew this was like something that they were working on. Um, and so I finally was able to sit on a couple set sit in in on a couple of like her sessions with Lindsay. Um and kind of how Lindsay said, like I was realizing that like some of the questions were like either repeat questions or questions that I like I knew the answer to, and she would like finish, she'd spell like half the word, maybe three-quarters of the word, but she would get to the point where it was like she was answering the question, but she knew that everybody in the room knew that she had the answer based on like people's reactions, and then she just could tell, like she she knew what the answer was, and she was halfway there. Like, why did I have to finish it? Um and so I think I had a conversation with my mom and talked with Lindsay, um, and I just was I was curious, like maybe we could try some like little bit more open-ended questions, something like that, maybe something where like you could hear her voice a little bit. Um, and that's kind of where it all took off. Um, but it's just been it's been awesome. Um, it's really opened a ton of doors for her. Um, and it's something that like I'm super grateful for all the work that she's put in and all the work Lindsay's put in. Um, I know one of the conversations I had with Aaron was like when she first kind of started, like, who was struggling with some of the eye tracking and like finding the letters and stuff like that. Um, and I grew up playing sports, and so I kind of just have a little bit more of like an athlete mindset where it's like you just have to figure it out, like practice, practice, practice. Um so Aaron and I had a conversation where kind of just like talk to her about like it's not gonna be easy, um, especially not right away, but it's definitely something that um will be super beneficial for you if you can figure it out and you do put that work in. Um, and she she has like I've Lindsay's there all the time. She's always spelling, she's always putting the work in. Um, and it's it's been awesome to see. Um, like her vocabulary is something that I never even thought she had. Or she has a better vocabulary than I have, um, better vocabulary than both my parents. We've had several conversations about it. Like, she's using words I don't know. I have to look up definitions afterwards. Like it's it's really it's been really awesome to kind of watch this whole journey unfold.

unknown 11:00

Wow.

SPEAKER_09 11:01

And I wish I could have been there for more of it, but I kind of am in the background, so I just kind of see like little glimpses of everything. But it's been awesome to kind of put the whole the whole picture together.

SPEAKER_02 11:14

Yeah, it's it's just so amazing. It's gotta be so so rewarding to like feel like there's this whole part of your sister that is there, but there's just not really a way to know. And then to see it all happen and like for you to be able to express yourself and share that side of you with your brother is really really incredible. So cool. So I've prepared a few questions for you, Erin, that you've prepared answers for me. So we'll go through the questions and I'm really excited to hear your responses. So the first one, Erin, is how would you describe you and Ethan's relationship? Okay. So she while you were talking, Ethan, she spelled something real quick. I'll do that real quick.

SPEAKER_04 12:01

Yes, I was ready.

SPEAKER_02 12:04

And this is the process where everyone hits at that point and they're in their own time. So she she was ready, and Ethan definitely helped with that. Okay. Okay. Here we go.

SPEAKER_04 12:20

How would you describe you and Ethan's relationship? Pretty much he's my favorite person. In my life, he has been my biggest advocate and has never doubted my ability to succeed. People often mistake me for the younger one because of my petite stature and assumed mental capacity. He has gracefully stepped into the role of big little brother.

SPEAKER_02 12:54

Yeah, it's it's it's just amazing how you guys support each other and seeing like how much you understand each other without even having been able to directly communicate for so long. Ethan, I'd love to hear your just thoughts on that and how you would describe your relationship.

SPEAKER_09 13:11

Yeah, I mean, I think like even before this communication thing, she really took off, like I do felt like I I could understand like what she was like trying to get across or what she was looking for. Or so I do feel like growing up with her, like I do feel like I understood her pretty well, um, especially in those younger years. Um, and then yeah, like I always felt like like should there be times where like she, I don't know, was having a bad day and couldn't necessarily express that verbally, right? And so it would kind of take more of like a physical form. And so me being like the smaller guy, she would come at me a little bit. Um, and I always felt like my parents would always be like, Oh, she doesn't understand, she doesn't understand. And to me, it was like, no, no, she understands, like she knows what's going on. This is intentional. Um, and so I think for me, like that was those are some of like the early memories where like I can really remember her um kind of just being on top of everything. Like it just seemed like she always knew what was going on. Um, but like she always would communicate with me, and it was always super cool when I would I would come home, I'd get like a huge E. So she could never she could never really fully say my name. So I just became E. And that's just kind of what I became around the house. Um, and so when I'd come home, I'd get a huge E. I'd get sometimes like a huge hug, um, sometimes like a little side hug. She'll do like little side hugs where she like throws her shoulder in there, and that's when you know she's not really feeling like really the physical contact. But um I think just kind of growing up with her and around her, um, just kind of picking up on some of the nuances of just her body language. I think people can tell you a lot without telling you a lot. Um, and I think that goes double for Aaron. Um, I think for a while she was really trying to find a way to communicate and trying to find a way to get her point across. Um and before AEC, I was me and my mom, I think, were two of the better people at doing that, and so or at understanding what she was trying to get across. Um, and so I think that has that kind of helped a lot build our, I think that helped build our relationship a lot before the communication. And obviously, since then it's skyrocketed, but um, there was like that foundation built off of kind of non-verbal communication um and just like love for one another, being there for one another. Um, she would always be at my sporting events, she would always clap at the right times, she would always come console me after losses. So I think there was for me, like I I could see it. She was in there and I could see her caring. She's super empathetic. Um, she's always had a good radar of like good people, like she's always been drawn to really good people, um, like outside of our family.

SPEAKER_08 15:55

Uh so it's just um I bet.

SPEAKER_09 16:00

Um yeah, I it's just she's she's awesome. Um, and our relationship has definitely been up and down, and it's taken me a while to kind of fully understand and come to terms with everything. And yeah, um, I mean, it's not easy um growing up in kind of this situation. Um, but looking back, I wouldn't change it for the world. Um, she's helped me become the person I am today. She's helped me grow so much as a human, um, and like with empathy and sympathy for other people, um, and just understanding kind of like what we talk, like what I said earlier, like kind of understanding that people can communicate without actually communicating. Like their body and their actions will tell you a lot of what you need to know.

SPEAKER_02 16:50

Yeah. Wow. Wow. Did you feel like um when you were growing up as her brother, were there a lot of times that you were around new people that you felt like you were kind of trying to help her communicate or help them like understand what she's saying? Like, was that a big part of the dynamic? And kind of what was that process like?

SPEAKER_09 17:10

Absolutely. Um, I would say I mean, she she will get her point across pretty well. She kind of figured that out. Um, but definitely when you go places, she has like her way of communicating. So she's a big fan of milk. Um, and so she'll kind of like if we go to a restaurant or something, she'll ask for milk, but it doesn't fully sound like milk. But we all know that it's milk because she says it every day at home. Yeah. Uh so I think there were times where we would kind of overstep in the communicating part and try to like interpret for her instead of just letting her kind of figure it out a little bit. And that's I think one thing that's helped a lot with the AEC is just kind of letting her figure it out. And like we, it's not our job to interpret what she's trying to say. She's got her own mind, she's got her own brain. Um, so that's definitely something looking back. I wish I did a little bit more. Um, but definitely, yeah, when you see people or you're out, or she runs into somebody and she's trying to get something across, or somebody says hi, and it feels kind of awkward because like she doesn't respond right away. But that's just like at a certain point, like I just came to the came to came to terms with the idea that that's just who she is, and it's okay. Like it's not it might be a little bit awkward at first, but that's all right. Like that's how she grows. Um, and so that I think is one thing that I do wish I did a little bit better on. Um, but she she's figured it out all right.

SPEAKER_02 18:39

Yeah, wow. Well, it's just so amazing too, just with everything that you guys have been through lately that you're discovered that and realize, like, oh, she just needs extra time, you know?

SPEAKER_09 18:48

Yeah.

unknown 18:49

Yeah.

SPEAKER_09 18:50

I think that goes for more than just like the disabled community. Like, I think it's okay, like if you don't have an answer right away, it's instead of like just forcing something out or trying to come up with something or interpret something for somebody else. Uh, like it's okay to take a time, it's okay for something to be awkward. You don't have to have an answer right away all the time. Doesn't have to be fluid, doesn't have to be perfect as long as it's authentic and real.

SPEAKER_02 19:14

Yeah, absolutely. I love that. I'm I'm really hoping that in society in general, as like more is being spoken out about inclusion and accommodation, all these things in a disabled community, that that translates more into just community in general because everybody works at different paces, has different communication styles. It's it's a part of life. So yeah.

unknown 19:38

Okay, all right.

SPEAKER_02 19:39

My next question for you. Are there any ways that you and Ethan's relationship has changed with the progress you've made in communicating through AAC? Yeah, okay.

SPEAKER_04 19:50

Two, are there any ways that you and Ethan's relationship has changed with the progress you've made in communicating through AAC? In learning to type my opportunities to share my life with others has increased in ways I never imagined possible. This means the most when it comes to Ethan. He only ever saw me as capable, and now he knows his intuition is something to trust and follow. Of course, now I can also tease him if I want, and that's simply fantastic.

SPEAKER_02 20:27

So, Aaron, what do you like to tease Ethan about?

SPEAKER_05 20:42

What do you like to tease him about? Oh, come back to you?

SPEAKER_02 20:59

We can work on an answer and we can play it with you then. So Egan, we touched a little bit about this before, but um what's it been like just having this whole way of communicating with her? And do you feel like it's been kind of validating, just knowing, okay, I was right, like there is all of this happening in her that process, like just seeing it all actually happen?

SPEAKER_09 21:23

Yeah, I think like for me, I never really thought about it as like validating or my intuition was right. Um for me, it was just it's just super cool that she has this ability. Um, and I I was hoping that she'd be able to find her voice and find a way to communicate. Uh but the what she's turned it into is something completely her own. And that's I think probably for me the coolest part. Because we all have like our own way of communicating, our own words, our own speech patterns, and things like that. And so kind of watching her form her own. And her own voice has been has been awesome. I think as far as our relationship goes, we were always always been pretty close. I think she's always I've always been, like I said, I've always been able to kind of get what she's meaning without the words. But the words that she's been using and things like that, it it definitely I feel like it makes my heart feel full. She makes me cry frequently, which I'm not proud of, but it is what it is. I just I am so proud of her and the work that she's done. Uh yeah. Yeah. I think obviously we've been close. I think it only brings us closer together. Uh just super grateful that she has been so driven to want to find her voice. Also, I think that's something that uh we haven't kind of talked about, and I I definitely haven't given her the credit for is none of this happens unless she wants to find her voice. And like we could do all the things, we can try everything and all that, but she has to have some desire to want to communicate, want to speak, want to have she wants to she has to have thoughts she wants to share. Uh and we're starting to see that now, and it's it's been awesome.

SPEAKER_02 23:21

Wow, wow. So cool. Yeah, with you living out of town, um, do you guys how do you communicate while you're away? Like, do you write letters back and forth to each other? What does that kind of look like? Or do you call her and then she speaks to you through AC on the phone?

SPEAKER_09 23:39

That's a good idea. Actually, we should I should start writing our letters. Um as of right now, I do like usually weekly FaceTimes with my parents and as long as like other calls throughout the week. Uh, and throughout those phone calls, I'll usually have some time where I communicate with Erin. Uh my parents also send me a lot of the stuff that she writes. Um, but I I definitely should write her. But uh as far as like going back to the teasing question, the thing she's been on recently is when we call, she likes to she's really into spicy pickles for some reason.

SPEAKER_06 24:14

That sounds good.

SPEAKER_09 24:16

So we have we have a little back and forth regarding some spicy pickles, and that'll take up some time.

SPEAKER_05 24:20

And she has a little yeah.

SPEAKER_09 24:24

She has some fun with that. She does. Yeah, I think it's more like the word and the pronunciation, but it's a good one.

SPEAKER_02 24:30

I get that.

SPEAKER_09 24:31

It is, yeah.

SPEAKER_02 24:32

That's funny. That's great. Karen, what is your favorite thing about your brother?

SPEAKER_05 24:39

Hey Yeah. Okay. Three. What's your favorite quality about your brother?

SPEAKER_04 24:50

Probably admire his confidence the most. I love that he isn't afraid to be brave. He's kind too, making him just a good person on all levels.

SPEAKER_02 25:05

That's awesome. Ethan, what's your favorite quality about Aaron?

SPEAKER_09 25:10

I think her empathy. Um, whenever we're sick, or if I would come home and I was sad, or I think I brought it up like after a loss for a game or something when I was in high school, she was always like one of the first to greet me or be there for me. And it was always a hug and like a smile and a hi. Uh, she could always, I think she does a really good job at feeling the energy that people give off. Um, and so like when she first started spelling, she had some trouble spelling with our mom. And I think a big part of that was she could feel the like the stress and the anxious energy that our mom was giving off because she wanted her to spell so badly so she could find her voice. Um, and that goes outside of just her spelling, but I think she does a really good job at understanding the situation, reading the room, um, understanding where she can fit herself in. And I think that's probably now that we we see her communication and we know that she notices everything, I think for a long time she spent trying to figure out where she fits in in rooms and things like that. And I can't even imagine how brave and confident you have to be to do that without a voice, because I still struggle to do that with the voice. Um, so definitely her empathy, uh, and then bravery and confidence right back at you, Bear. You've always wanted to be the center of attention, the star in the room. Um, and I I'm very envious of that of you. So definitely those three things.

SPEAKER_02 26:41

Yeah, that's awesome. Erin does uh cheerleading with my sister, and the every performance, my favorite part has always been Aaron is always still dancing, like she's just the front of the stage and she's so excited, and she'll be smiling and dancing, and you can just see how much she loves like being there with everybody and just there to like enjoy it, and it's just always been like a highlight. I love it. The coolest here. So, Aaron, what is something your brother does that annoys you?

SPEAKER_00 27:15

Are you ready for this one?

SPEAKER_02 27:16

Yeah, yeah. I can't remember what you said, so it was four.

SPEAKER_04 27:21

What is something your brother does that annoys you? I think him moving away is the worst, but I am happy for him.

SPEAKER_02 27:34

Ethan, what's it been like um living away? I live away from my sister too, so I know it's a challenge and I'd like to hear your take on it.

SPEAKER_09 27:42

Yeah, it's definitely it's on my mind constantly. Like where no matter what I'm doing, um, I'm usually thinking about how things are going back home with my parents, back home with her. Um it's definitely something that I've had to kind of work through. Uh the first couple years away was kind of rough. Uh throughout my whole life, I've had a very good support system with them and with her. And so kind of being out on my own, it was a little bit of a challenge to kind of figure out my own support system and get myself through it all. But her communication really has been kind of a huge help for me also. I kind of came to the idea and came to terms with the idea that I can't tell her that she's got to push through it and she's got to work through the hard times if I'm not doing it myself. And so I think her taking those strides that she's needed to take with her communication has helped me a lot. Uh, but it's definitely it's rough. And it's always nice when I get to go home, especially after whatever it is, something stressful, something like that. Usually I drive home, so it'll be like a long eight-hour drive. But as soon as I pull in, right next to the street, she's usually standing in the window waiting for me. And she'll oftentimes like open the door and run out, give me a big hug. And so that's always awesome. I always have, I know I always have somebody in my corner back home, uh, no matter what's going on. And she's always super excited to see me no matter what I have or going on or what I've done or anything like that. She's always there to greet me with a huge smile. Um, and I know that's not gonna change. So that's awesome. It's a very comforting feeling.

SPEAKER_02 29:21

Yeah, it's pretty special to have that relationship too from home too when you do go home.

SPEAKER_06 29:26

Yeah.

SPEAKER_02 29:27

Yeah. Aaron, what part do you most miss the most about Ethan living away?

SPEAKER_05 29:52

Smile. Every day.

SPEAKER_04 30:05

Seeing his smile every day.

SPEAKER_02 30:10

Yeah. I know it's pretty special having each other around to make each other laugh and hang out with Han. I bet he misses your smile every day too.

SPEAKER_06 30:25

I'm there.

SPEAKER_02 30:28

So Aaron, can you tell me about your favorite memory of you both together? Let's see what we have.

SPEAKER_04 30:36

Five. Tell me about your favorite memory of you both together. My memories of Ethan fill my heart to the point of overflow. One that brings me incredible motivation is the first time he saw me spell. The tears in his eyes told me that he was finally seeing a version of me that he always believed existed but lay trapped beneath the surface.

SPEAKER_02 31:10

So, Ethan, what was going through your mind in that moment? Do you remember the thoughts you were having?

SPEAKER_09 31:16

Uh yeah, I remember kind of going back to my mom's usually really tense and like super anxious about it. So I remember like trying to be super relaxed, and I was kind of just laying down, just trying to pretend like it was just a normal day. Uh, but it was I had heard some things about like she was spelling, but then my dad was a little bit on the fence about like whether it was real or it was whatever. Um, and so I was just kind of there to see it with my own eyes. And she, yeah, I mean she did it, and it was I just yeah, I think overwhelming or over what did you say, overflow of emotions from the heart or something like that? To quote you now. Um, I think that's a great way to put it. Uh I just overflow of emotion. Definitely there was tears. Uh just finally she was finding her voice and we were seeing it firsthand. Uh it was it it was and it still is. Like every time she I hear something that she wrote, or I hear that little like prologue to go voice, it it just warms my heart. And I think I will feel that way for the rest of time. I just think that is just a permanent feeling that I will have when I hear her spell and I hear her communicate. And I I'm super grateful for that. Um, it's an awesome feeling, and I'm sure it's an even better feeling for her.

SPEAKER_02 32:48

So yeah, well, yeah, it's gotta be um I'd imagine like that first time it would be nerve-wracking because it's like you really want to know that it can happen, but you haven't seen it yet, so it's like you don't want to get your hopes up too high, and yeah, that's a lot. Right. Aaron, what is something that Ethan might not know about you that you would like to share? Yeah.

SPEAKER_04 33:18

Six. What is something Ethan might not know about you that you would like to share? He knows me better than most. What he might not know is my concern that my care will fall to him with the weight of obligation he doesn't deserve to carry. I know he must think it's a job that will eventually fall to him, and I fear my need for forever support will change his future.

SPEAKER_02 33:47

Is on your mind a lot, or do you have any thoughts on that that you would like to share?

SPEAKER_09 33:51

Yeah, so uh my mom actually shared this one with me prior to us filming this, and I was very grateful that for that because when I read it the first time it messed me up.

SPEAKER_05 34:00

Yeah.

SPEAKER_09 34:01

Um, it's it's definitely something on my mind always. Um in this communication, her being able to communicate has helped a lot with that. However, it's it's still something I constantly worry about. Um her well-being is definitely a top priority of mine, and now it's just like she's just a fixed thing in my life, like there is no way around it. Um but coming to terms with that when I was a little bit younger was kind of tough. Um, not really understanding, looking at friends of mine and seeing that they don't have responsibilities like this in their life, not understanding why I was put in this position, uh things like that. Uh, and it was for a while kind of uh uh like a bad feeling, like not resentful, but I was upset. Uh I didn't like the responsibility. Um and now it's just it is what it is. Um I wouldn't change my relationship with Aaron for the world. Um hearing that was it was really interesting because it was a whole flood of emotions because not only was it like she's super caring and she's worried about how I'm doing, but it's also like she's thinking and worrying about me just the same that I'm thinking and worrying about her. Yeah. And so for me, that was kind of a us like that kind of flipped the switch in my head where it's just like we're we're gonna have to get through this together. Well, no matter what. Like it we're tied at the hip and I'm okay with that. And I will choose that life every time if you give me the option.

SPEAKER_02 35:45

Yeah, yeah. Wow. Yeah, I I feel like that's such a unique um experience that people uh that siblings of people with disabilities have. And you don't meet a lot of people that really understand it and relate to it. Like whenever I mention something like that to my friends, they're always really surprised. I'm like, oh, I'd never thought of that. And you know, it's it's part of the deal, and it's um yeah, it's it it it's just such a unique thing, and it's hard to find people that really understand.

SPEAKER_09 36:17

Yeah, no, absolutely. I find that very frequently in my day-to-day life. Um, I've luckily I've been I've been lucky enough to do a ton of work with Special Olympics and uh challenger baseball, and I've been around a lot of great people that have have disabilities and also their families. So I've slowly kind of built somewhat of a network of people who have siblings and stuff like that. Uh but still, yeah, it's just it's definitely a unique experience, but I'd it's the best experience I've had for sure.

SPEAKER_02 36:52

Yeah, totally. So, Aaron, what part of being a sibling with disabilities has felt the hardest for you, and what helps you get through those moments?

SPEAKER_00 37:02

Ready?

SPEAKER_02 37:03

Yeah.

SPEAKER_04 37:05

Seven. What part of being a sibling with disabilities has felt the hardest for you, and what helps you get through those moments? In living my kind of life, there are so many challenges, but being Ethan's sister has never been one of them.

SPEAKER_02 37:23

Yeah, you're pretty lucky. Ethan, what are some of the most unique aspects of your bond, and how do you feel that's shaped you?

SPEAKER_09 37:34

I think definitely kind of coming back to it is the understanding the nonverbal stuff, whether that's her or me, I think being empathetic to one another has been huge for me in my growth as a person. Um just like she's in the best way possible. She's got kind of a quick memory, or like a short memory. So, like something will happen, she'll be upset. We'll have like a little bit of a a sibling tussle as it goes, but then 20, 30 minutes later, she's she's decompressed, she's and she's back at me trying to give me a hug. And for a while, that was like, I was like, no, like what? Excuse me, like we were just we were just pissed at each other 30 minutes ago. Like, how is this how is this possible? But like going over it and over and over it and doing it so many times, I think it's helped me a lot in just understanding that people are always going through something at any given time, or people are going through whatever they're going through at any given time, and so you can't hold too many things against people. Obviously, if someone was wrong by you or whatever, you have you can have your limits. But that being said, like everyone's con everyone's life is just as complicated as yours. Um, and kind of understanding that and giving other people grace and understanding that it just sometimes stuff happens, but it's how you handle it afterwards, not how you handle the situation that really matters. Uh, and she's she's one to always come back and try to make things up with a hug or try to like she'll like rub you a little bit, and it feels like she's petting you a little bit, but it's her way of showing love. Um so we've come to we've come to disagreements, but also we're quick to put them aside.

SPEAKER_05 39:26

Yeah. Hi, hi.

SPEAKER_02 39:32

Hey.

SPEAKER_09 39:41

Also, I'm not sure if you guys haven't figured that one out already. Um, very she has the best laugh. Very contagious. I'm sure if we figured that one out. Very contagious, and she also she also will laugh until other people laugh with her. So she will sit out as long as possible until somebody else joins in on the joke. Um, and it's it's awesome. She just loves making people smile, making people laugh.

SPEAKER_02 40:06

Um yeah, she really likes brings the energy and brings the life. That comes out in her spelling too. We have a girl group that meets once a week, and she's our resident comedian in that scenario. I that I love it. Yeah, my sister Ella loves laughing with you and matching t-shirts with you, and she always talks about the jokes you guys have together. All right. Yeah. Okay. Eight.

SPEAKER_04 40:38

What is something that you would like people without disabilities to better understand about you? Like people everywhere to stop assuming that my lack of speech means I don't think and understand.

SPEAKER_02 40:51

Yeah, absolutely. Erin, do you feel like your progress with AAC is changing these assumptions people make about you?

SPEAKER_05 41:07

It is helping.

SPEAKER_04 41:11

It is helping.

SPEAKER_02 41:14

I'm sure it's just such a relieving feeling to be able to express yourself and show people exactly what you're thinking after not being able to express that for so long. And it's been I just want to say it's been so cool to just get to know you better because I've known you for several years ago. And just reading everything you write and learning about all of this has been such an amazing experience, and I'm just so so proud of you because you're such an intelligent and insightful person, and you're just so creative and witty and funny, and you just have so many great qualities, and it's so great to be able to see it all firsthand. So I'm really proud of you. Ethan, I would love to hear just you talked about this a little bit, but what have been just some of the biggest lessons you've learned through this whole experience that you guys have had lately?

SPEAKER_09 42:02

Uh, one thing, just kind of going back to her last thing about meeting people and how it's changed for her. I think one of the coolest things for me that she had kind of has gone about is when she started communicating and using this form of communication, she wrote how she wanted to remeet a lot of the people in her life as this like new self. And I thought that was awesome because it's like people, there's a lot of people that have love for her and she's shared love with. Um, but her wanting to kind of remeet those people and kind of show her this new version of herself, uh, showed me that she has like the confidence in herself and she's finding that confidence where she feels like she's finding her who she is, and she wants to show that to the people that she loves and cares about. So that's one thing that uh I definitely at least wanted to highlight after that question. Um that I think is super important and super cool. Like, I was for me, that was awesome. Like, she wants to be vulnerable enough to open up and share the new version of herself with these people that have have cared about her throughout her life.

SPEAKER_02 43:08

That's really beautiful. It's like giving all these people that she already knows and loves a chance to like really know her. And I think it speaks a lot to the community that you guys have that there are people that like she really cares to express herself to to this side of her.

SPEAKER_09 43:24

Hey and as far as like lessons learned, um, I think like if I were to psychoanalyze my life, a lot of the traits I have and the things that I do tie back to the way I was brought up around Aaron and with my family. So I think she's a huge part of the person I am today. As far as like lessons go, I this goes to her and also my mom, but just never give up. Uh, I think we've tried various different forms of communication. Uh, we talked before this about how. Before she used Prologuo Prolog Go to Text, I think is what it is. She used Prologo QuoteGo, which was it was just on her iPad and she had buttons that she would press. Um, and she would like tell jokes and all this stuff. So you could see little bits of her personality, but it was all kind of like curated and put together by somebody else. Okay. Um, but just watching the persistence that her and her mom have had, or her and my mom have had to kind of get through all these different forms of communication and then finally find one that like sticks. Uh has been looking back, has been uh it's it's crazy. Like I just it's like, and I'm sure at the time my mom probably thought she was crazy. Same with my sister. Like, I think they probably were like, but just they just didn't give up, neither of them did. Uh, and that's and it it's paying off, and so that's definitely one thing. Uh just her she wakes up with a smile every day. I mean, I know there's times where it's like she's a little grumpy or woke up on the wrong side of the bed, but she always finds a reason to smile. She's always trying to give other people a reason to smile. Uh, she's always trying to create a laugh as she's doing right now. She's trying to get the people around her to laugh. Um, she wants to live in a happy world, and I think that's something that is really simple, but it's also something that is kind of kind of taken for granted. Um, we wake up every day and we kind of just take that for uh take advantage of that. Um and we don't appreciate the fact that we have the ch we have the opportunity to make this world whatever it is, and she chooses daily, day in and day out without being able to communicate. She chooses to try to make it a happy world. And I think that's something anyone can learn from. Um, definitely myself included, because I see it on a day-to-day basis. Um, her persistence, uh, her ability to communicate even when she can't speak. She definitely gets her point across when she's upset or happy or anything like that. And she's not afraid to either. Um where no matter where she is, and I think that's something that has been some good and some bad, but you just kind of take it for what it is and take the good out of it. Um, she's made me a better person, she's maybe a more understanding person, a more empathetic person. Um she's made me a ton of new friends just being around her with in public. Like she's that type of person where you'll just be out in public, she'll just say hi to random people, or she makes friends with the grocery store worker that she sees every day, or the lady that cuts her hair every time. Like she's just like constantly out looking for connection and people. And I like I would consider myself a little bit more of an introvert, and so seeing her go out and do all these things without being able to fully communicate has been kind of changed life-changing for me because it's like if she can do it, I I gotta be able to do it. There's just no there's no excuse because she's not using hers. Um, so I think that's one thing that's like I've really learned from her is like there is no excuse. Um just you figure out a way to get it done.

SPEAKER_02 47:16

You set the bar, Erin.

SPEAKER_09 47:19

Yes, it sets the bar very high.

SPEAKER_02 47:21

You really do. Do you have any advice, Ethan, for family members of people who are on a similar journey as Aaron with AEC right now?

SPEAKER_09 47:30

Uh my advice would be it's not easy, uh, but keep going. And I would I would also like to say that there's limits to it, but I think it's also good to push this community. Um, I think when we started kind of for me, at least when I we started to push Aaron and kind of put the ball into her hands instead of kind of doing it ourselves and pushing her to improve, like there's obviously limitations to what we can do, but there's limitations to what everybody can do, and oftentimes people push past that. So, what's stopping this community from doing that? Also, you know, I think a lot of times the limits that are put on it are societal and not person to person. I think every person has their own limits, but don't let society's limits stop you or your child or your sibling uh from achieving their dreams. I think also finding what they're passionate about is awesome because everybody's passionate about something, and when you find that, use that. Like Erin's big into reading, she likes reading, she likes storytelling, she likes comedy, um, and that's helped her a lot with her writing. Um she uses that a lot in her writing. Um, but just like they all have something they're passionate about and find that thing, I think, and then kind of run with it. And that's okay if it's something super niche or very specific, or even if it's something broad. Yeah, uh, it's it's something they care about, and they might not understand or get that they can pursue that thing, or that's something that is okay to care about. Um, but there's no limitations, I think, is one thing that's I've really taken from all of this is you don't the only limitations are the limitations you put on it. And so I think Aaron is breaking down a ton of barriers that at least we thought she would never get over it. Yeah, um, and that's kind of our own fault. I think we could have pushed her a little bit more throughout times, but she's starting to push back a little bit, so that's been awesome.

SPEAKER_02 49:38

That's awesome. Erin, do you have any advice for people who are in the process of learning AAC right now?

SPEAKER_06 49:48

Hi there.

unknown 49:52

Okay.

SPEAKER_02 49:54

She was working on a different thought. What was your question again? I'm sorry. That's okay. She could share another thought if she wants to. Um, I was asking if you have any advice for people who are learning AAC right now. But if you want to share another thought, that's completely fine.

SPEAKER_05 50:33

Yeah, yeah. Captive audience. You can look away after you find it.

SPEAKER_04 53:06

Doubt. Don't listen to doubt.

SPEAKER_02 53:12

I love that. Yeah. That's really good advice, Aaron. I think everyone could learn from that. Aaron, did you want to share any of your poetry or your writings with us? Did you have anything to share?

SPEAKER_05 53:31

Do you want to share something? Sure.

SPEAKER_02 53:55

Let's see what we have on here. There might be one already programmed in here. Yeah. At my window, Mother's Day, or an untitled one.

SPEAKER_05 54:19

Eyes on it. Eyes on it. Window? Okay. Window. Okay. So this one's titled At My Window. Ready? Yeah. Alright, here we go. At my window. By Aaron Kelly.

SPEAKER_04 54:48

Life reduced to lines on paper. Am I just a number? Maybe for the ones who don't know me, it seems I might be lost. Seems I'm inside my mind, no direction to be found. It's the me that's waiting by the window. Always watching. Only you can't see the wind. Just the way it moves the trees. But I am here. And like the wind, you can't see me unless you really listen. Group of symbols.

SPEAKER_05 55:28

Group of symbols.

SPEAKER_00 55:35

Group of symbols. It's not part of the poem.

SPEAKER_02 55:38

Did it like add that into the for some reason when it's finishing reading something, it always adds that. I keep threatening to put on my t-shirt because for funny. Well, that was Aaron, that is really, really beautiful. Thank you for sharing that. You're so talented, and it's so cool to see this whole side of you. Well, thank you so much, you guys. Do you have any final thoughts? Any any last things you want to say? Aaron has one. Yeah. Yeah. Thank you, Hannah. Hi to Ella.

SPEAKER_04 56:17

Ethan, I love you.

SPEAKER_02 56:21

Thank you, Erin. Thank you. I really appreciate you doing this. And Ella will be so happy to hear that you said hi. She asked about you all the time.

SPEAKER_09 56:31

I love you too, Bird. Don't worry.

SPEAKER_02 56:34

Well, thank you so much, you guys. This is really awesome. And it's so great to hear your story and just hear what you have to say.

SPEAKER_09 56:41

Yeah, thank you for doing this. And I kind of summed it up, but this is this is awesome. Thank you.

SPEAKER_03 56:46

Thank you for listening. I hope you enjoyed the show and got some great takeaways. If you have a disability or if you have a sibling with disabilities, please reach out to me. I'd love to talk to you about having you on the show. You can DM me at Instagram. My handle is our kind of normal podcast. Till next time.