Season 3, Episode 7, Part 2: Kayla McKeon and Elyssa Stallcup, "My Own Rules... My Freedom"

Kayla McKeon and her roommate, Elyssa Stallcup, discuss chores and their chore chart, Kayla's version of supported decision making, different circles of support, and more. Kayla is best known as the first professional lobbyist with Down syndrome. She is also a podcast host, sought after keynote speaker, community college graduate, and tireless advocate. Elyssa is her good friend and mentor. She also has siblings with Autism. 

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Transcript

Greta Harrison: 0:00

Hello, my name is Greta Harrison. Welcome to born fabulous podcast season three, Episode Seven. The theme of this season is young adults with intellectual disabilities living full lives of independence and interdependence. You will hear interviews with parents support staff and of course the young adults with intellectual disabilities. Please note that these interviews were done one to two years ago. achieving independence is a complex journey for many individuals and families. There were many stops and starts with various entities when putting together season three. Regardless, this content is very relevant and we hope you will find it helpful. This is the second of three episodes that feature Kayla McEwen and Alyssa style cup. Alyssa is Kailis mentor good friend and roommate. Kayla is well known as the first professional lobbyists with Down syndrome, a sought after keynote speaker, a podcast host, a Special Olympics athlete and champion, a tireless advocate. She does all of this with her own mixture of grace and spunk. Please enjoy this short clip of the ring. The lyrics are by Melissa regio, a young lady who had Down syndrome and was the focus of episodes one through four and season one. The music and voice are by Rachel fuller.

Rachel Fuller: 1:36

Angel goddess send me

Greta Harrison: 1:47

How do you tackle things like cleaning laundry and cooking? How do you tackle those things? So

Kayla McKeon: 1:53

with cooking, we do work. Tuesday was a Thursday, unless when I was at a plan like Oh, I'm went out to dinner. That means we come up with recipes collectively. And we cook together. There's your clock in with me and reward. Like last night with me shaking monkeys was a little spicy, but it was very good. Bye. We do that. We have a short shot.

Greta Harrison: 2:22

Oh, I love it. Yeah, look at that. Wait, hold that up. Hold that up again. So I can get a picture of that because that is that is great. Okay, so you have a chore chart. Okay, does that like change periodically? Yes,

Kayla McKeon: 2:43

it is changes every week. So this week, I'm gonna vacuum. So next week, Elissa vacuum, and I went that's when she went up says I do it the following week. So it's interchangeable a

Elyssa Stallcup: 2:57

big way. Yeah, so I vacuum this past week. She's gonna she's gonna be back next week. And then we rotate. So this this week, she's got the bit this this past week or this, you know, because we start our chore chart on Mondays. So the next week, so starting at 21. She'll have to back in when next dishwasher or do the dishwasher like load the dishwasher? And under the dishwasher? Actually, we we both load the dishwasher but like unloading the dishwasher. You know, that sort of thing. Starting it.

Kayla McKeon: 3:33

Start and Finish. And we clean our bathrooms.

Elyssa Stallcup: 3:39

Yeah. And it just switches by the bathroom. Yeah, the bathrooms. Yeah, we do our own, you know, respective bathrooms. Yeah,

Greta Harrison: 3:48

you guys are very equal. Across the board. I love that.

Elyssa Stallcup: 3:52

We try we try.

Greta Harrison: 3:53

I try. You know, when you when what if either of you decide to get married, you're gonna already have this in place and your spouses are gonna have to be equal. I can tell that right

Elyssa Stallcup: 4:02

now. I have some make some follow a protocol. Yeah. Hey, yeah,

Greta Harrison: 4:08

I think I think that's, that's great. What about laundry? Do you just do your own laundry or what? We

Kayla McKeon: 4:16

do own laundry, but we don't do it at the apartment that costs $1.50 that you want to do. So we don't seek at home is a is for A and B we get our parents out of the deal. That works out even better.

Elyssa Stallcup: 4:30

Okay. Yeah. Yeah. And I sometimes so I do my laundry mostly at my parents house because it gives me an excuse to go see them. You know, I, I like hanging out my family. Um, but sometimes if I just like, sometimes if I just want to get it done. I'll do it here. Um, you know, but that's not very often so.

Greta Harrison: 4:57

But I like the way you both still want to be with your family. some, you know, you have your independence. But that doesn't mean you don't ever want to see your family again. So you by

Kayla McKeon: 5:06

means obviously in our family, right, so, so much like, we do this like, son one day just by the Night, I hope they are in south. So just let me know like, hey, it's Sunday I'm going to spend the night of my parents are taxpaying get back to the apartment. So we have a schedule of I'm here, and few that help parents out. Or vice versa, I will tell them when I'm at my parents out, and I'm spending the night that so we have an idea of what else Canvas will look like.

Greta Harrison: 5:39

Okay, and obviously, yeah, each one of you doesn't want to go Mia and nobody knows. So you do kind of keep in touch with each other. Okay. And then is there is there anything that you want to share with the audience that either of you need help with, that the other person helps you with?

Elyssa Stallcup: 6:00

I saw I helped Kayla with some of her chores. A couple of weeks ago, I helped her, you know, does my fan with dusting your fan and it's hard to get up into. Um, it's that thing, the overhang where the curtains hang down, and it's that thing that holds the curtains. So between that and the wall, it's hard for her to get so I helped her with that. Um, here's the best and sometimes you know, if I noticed that she that, you know, there are a few spots in the dishes, she cleans out, I'll help her, you

Kayla McKeon: 6:42

know, your mind me and then I try my best. I can get it then as a collective.

Elyssa Stallcup: 6:48

But yeah, I'll I'll I'll step in and see how she's doing it. So that way we can figure out ways to improve so it doesn't, you know, happen again,

Kayla McKeon: 6:59

let's cumulate Yeah, so

Greta Harrison: 7:02

and Kayla, do you mean this and this is to? I love it.

Elyssa Stallcup: 7:08

To where you help by putting out our coffee cups.

Kayla McKeon: 7:12

Yes. Every day when I lived with my parents, I always put out coffee cups for my mom and dad. Just they carried over to the apartment where I'm taking out. Oh, coffee mug, my tea mug. I don't know why the thing is to me.

Greta Harrison: 7:32

That's comforting for you. Right? It's a little routine. And now what about if you don't want to answer this, that's fine, because you know I can cut and edit this which I'll have to edit this right now anyways, but what about with finances? Does anybody help you with finances at all? Kayla, like fit, you know, balancing your account or anything like that.

Kayla McKeon: 7:56

So know me I've been I take care of my own checking account. I feel I X amount of money with me. But I do need how as normally my parents that helped me. My mom is my bucket II. So we always do that together.

Greta Harrison: 8:13

Okay, and speaking about help, this is a good time to talk about supported decision making. Sure, Kayla, you have a supportive decision making plan, correct? I did. Yes. You want to talk about that a little bit? Sure.

Kayla McKeon: 8:29

So with with agency advocates, is all supported decision making, which means is always my plan. What do we want to do? We know I know I have a choice to do. Unless I wish I can automate the luck god. Oh, I see them is a little spotty has double check that again. But normally, we always go out for coffee. So always making some coffee plays out. We do crosswords some that we used to do book club, which we're gonna try to bring back again. So it's always what I want to do. And if something like I love walking towards another menu, I will go out and take a strong walk. So as always what I want to do and we go and do it. And I love it because now I'm waiting my boyfriend in the plan. But if I find out, I need to talk about him a little too much. And I need to enjoy my daughter so I really like him too much on the love life talk. So I know I had the green back to this is what is really going on. We're gonna back to like, let's talk about your work life. What do you do with the other mentors? Oh, you knit Eva. What are you knitting? So coming up with different topics, and not just the boyfriend if you know what I mean?

Greta Harrison: 10:00

And with, okay, and I want to make sure I understand the supportive decision making correctly, the supported decision making I'm thinking about might be a little different than what you're talking about, you're talking about something with the agency you work with, correct. The supported decision making I'm talking about is something that anybody can do, where they form a circle of support around them. They have sometimes family, but more often friends and other people in the community that they can rely on that maybe one person for advice on money, one person for advice on relationships, you know, they have people they can call on, and they meet periodically, it could be once a quarter. Okay, so do it. Does yours work like that? Does your

Kayla McKeon: 10:47

does yes, no, I don't have my iclm myself all. But we have a meeting like then a while, and is actually made of more of my mom's friends, though, which I achieved shows. So I kind of sub out. Exactly. It's very do come together we do when so like, oh, like my aunt Julie was a sad, she's a public speak off. Let me voice I'm glad I was the was was you can get into the space. So it's exactly what you're thinking. Okay,

Greta Harrison: 11:21

where they're putting their heads together to is that. And so if you have a situation come up where you need help there certain people in your circle that you can go to? I mean, obviously, you have your roommate who you adore, but you don't load everything on your roommate, there's other people that you can go to for help, right?

Kayla McKeon: 11:42

Yes, I was. That my parents, I would always go to my parents. I know, I can always argue about this. Friends, I can always go chill. There's not a father for me.

Elyssa Stallcup: 11:57

And we talked about this last week. Um, but she so she, after she was done vacuuming, I told her Kate, you know, you can also like, do a chore with another mentor. So that way, you know, it's all. So I'm not the chore tracker, you know, I'm not I'm not. I'm because I want to make sure she's doing these chores, right. But she's got another she's got a few more other supports, you know, that can help her that can give her tips on what to do you know how to do it, that sort of thing. So

Kayla McKeon: 12:34

and I have a mentor every day. And my Tuesday, Thursday is consistent. My Monday was is consistent. And with school, we'd like to have that consistent mentor to help me with my schooling. Then Fridays is one of my favorite days because I believe Alyssa.

Elyssa Stallcup: 12:53

Yeah, so sometimes, so it doesn't always get that as a favorite part out if you want. It doesn't it doesn't always fall to the monday wednesday person to help her with her schoolwork. Um, sometimes I have helped her with her, you know, with like, you know, like, yeah, meteorology. That was a tough class. Yeah, no.

Greta Harrison: 13:16

She took the tough to Kayla took the tough classes. Yeah, that was

Kayla McKeon: 13:21

very tough. We got through it. Too much math.

Elyssa Stallcup: 13:25

But so yeah, it so it doesn't all fall on me. And it doesn't all fall on, you know, the other mentors either. So I think it's pretty equal as

Greta Harrison: 13:38

well. This is also a good example of in New York state, there are strong supports, yes, that help with independent living and interdependent living. Not every state has that. So people need to see what what works. And obviously this works. It also works for Micah. I mean, Micah Fialka Feldman lives near you. You know that and he's also got strong supports that help him live independently. So yeah, that's.

Kayla McKeon: 14:10

So I know he has a sister that he can rely on. Sorry to say I don't. I always find my sister and my mentor was, you know, you're right.

Greta Harrison: 14:21

He has a sister he can rely on but the biggest thing that he relies on is his circle of support. And I've had that in place since he was in school. You know, elementary school, they started that so he's been relying on that a long time. So that's great. So what are some of the pluses What do you love about living where you live now living together being on your own? I want to hear from each of you. Okay.

Elyssa Stallcup: 14:48

You saw Ah, so I the pluses are, it's quiet so i i Come so I have three brothers and and a dog. But one of them is in the military. So technically, I lived with two brothers for a while. And they are definitely able, yes, they have autism. But um, so it was lot in there. You know, when I lived at my parents house, so at first it was weird to move out and experience the no noise, but I'm used to it. Now I have and I have my own space, I can organize it the way I want it to, to be organized, you know, I'm so you know, that, that those are pluses? Also, you know, we have our show time where you know, where we'll pick a series to watch. We've watched New Girl, we've watched cable girls, we've watched Zoe's extraordinary playlist now we're on flight attendant. So yeah, what do you think? What are your positives? Or what are your pluses living away? I

Kayla McKeon: 16:05

like living on my own. I love seeing my parents, please don't get me wrong. But I love being able to appropriately make my own rules. Being able to have the freedom to be able to cook independently, being able to say, Okay, what any body that is differently abled, they can't live on our own, that it was a good thing to get your independence and have your freedom and been able to do something that you want to do. And I was just moving out, moving to Washington, that was hard for being able to live here in Syracuse, locally, which is much better. Because I think I do have that I will I can come to you, to my parents. I can take a walk to go get a cup of coffee. We have a plaza near us where we can walk over and so it's just nice to be able to walk in this area. Sometimes it is quiet, and I like it. So

Greta Harrison: 17:15

what are okay, so the what are the downsides to living where you are, then I don't mean the actual location. But I mean, being on your own. Whatever your downsides. Are there any downsides?

Kayla McKeon: 17:30

I can't think of any downsides. There's sometimes I miss my parents and but I know that I would call advice I know be able to. Hey, mom, what's up? So I'm always calling. I do call my parents a lot, but I'm telling them that just missed them. And I don't talk to them more often. But that's pretty much it.

Greta Harrison: 17:52

Elyssa you're missing your family?

Elyssa Stallcup: 17:54

Oh, yeah, of course. I miss my family. I don't really visit them during the week. I'll text them sometimes, but I don't I see them and communicate with them less during the week than Kayla does. Because Kayla calls her parents every morning. That's just not something that I do with my parents. Um, but I do that's why I think you know, it's important for me to like have said the night you know, Sunday's over there. Just because I missed them, you know, so it that part I do, Miss You know, I like it. I don't know if it's fear of missing out, but like, you know, when I've been away that long. I wonder what they've been doing without me sometimes. And but yeah, that's

Kayla McKeon: 18:50

all says. So your brothers miss you. Oh yeah. Christian and Daniel.

Elyssa Stallcup: 18:54

No, Didn't mom told me that Daniel missed me. Last week. Um, but yeah, that's yeah, that's a downside. I have a dog, you know that. Yeah, back at the house that you know, I love and we formed a bond with during COVID. But now she is my mom's dog. You know, like, she used to be my dog. But now she's my mom's as I'm like, she follows my mom everywhere. But yeah, yeah, that's yeah, that's it. So Alyssa, you

Greta Harrison: 19:31

know, I want to ask a little bit about you and how you got to the position that you're in? Sure What led you to the position that you're that you're in?

Elyssa Stallcup: 19:41

Okay. So, five years ago, um, I was graduating college, my degree my degrees in linguistics, and I didn't really have a plan for what I was going to do after that. And at the time, I worked at a shoe store. And there was this pair of people that came in. And I thought they were family, I thought they were, I can't remember, you know, I think it was, I think I thought they were mom and son. Um, but they left after getting their shoes and everything and they show the mom came up to the rug, or the person that I thought was the mom came up to the register, and she started talking about the agency a little bit. And so I, when they left, my assistant manager, and I were talking about that, like, and I told her, I didn't know what that was, like, I had no idea there were jobs where you can help people with disabilities, you know? And, like, yeah, that's, that's totally a thing they've got, they've got a bunch of agencies, and she told me about the one that she was going to start working out with, which is, you know, so that was great. Because right near me, and, um, so basically, you just, so when I heard it, um, she, she said, You, like, take your individuals out into the community work on goals with them, you know, do whatever they want. Um, I'm like, you know, I do that already. Because I have two brothers, who are on the autism spectrum. And, you know, I, if my parents need me to do something, I'll, you know, hang out with them, or, you know, just hang out with them on my own accord, you know, so I thought I already do that, you know. So I would be really good at, you know, helping other people. So, I put in my application in April of 2017. And I started getting on boarded in May. And that's when, you know, brokers started calling me figuring out, you know, who I would be compatible with? So, yeah, and that may was when I met Kayla, and you know, my other individuals, but um, yeah, that's how I got, that's how I came to work here. So and I've been working with kids for five years. So

Kayla McKeon: 22:30

normally, with advocates, you would interview mentors to see if they are compatible with you. And I know families have done it on themselves. Not me. I like doing my own interviews. So I interviewed all the way my mentor once I interviewed Alyssa, I think his eyes made you sweat? Because we all know, yeah,

Elyssa Stallcup: 22:57

um, I also had to do a preliminary interview with the chair, or I don't know what her title is. But I had to do a preliminary interview. And I told her, like, my background, and she said, Oh, can you write Can you write all this stuff up, but you're telling me about your brothers, because, you know, this would be great for families to see when they go to like, when they are picking people to interview. So, you know, I wrote that up. And then yeah, that's when, you know, brokers started contacting me, you know, for interviews. So

Kayla McKeon: 23:36

yeah. And sometimes with onboarding and takes a little while, because that contracts, being upfront and a lot goes into onboarding with agency. And actually, that's how I lost when I'm not now but years past is how I lost a mentor because the process can take very long and this last one but gained to be one of our mentors for me

Elyssa Stallcup: 24:04

it was it was a few weeks it it wasn't that long of my one I remember being at an interview and the broker is saying this is the this is one of the quickest onboard light that we have, you know, the background check came back really quickly. So

Greta Harrison: 24:24

thank you for listening to the seventh episode of born fabulous podcast third season. I hope you enjoyed it and want to hear more short video clips from most episodes are available on our YouTube channel and unborn fabulous podcast.com. In episode eight, you will hear Kayla and Alyssa discuss the shortage of mentors healthy communication, tips like the 54321 rule, advice and more. Their organic interactions and support for each other our models for all please follow and like us on Facebook, Instagram and Twitter. If you enjoyed this Episode I'd be honored if you would leave a review wherever you heard this podcast. Now please enjoy this clip of the ring. The lyrics are by Melissa regio, who was the focus of season one episodes one through four. The music and voice are by Rachel fuller