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Ep 20: Inclusion over Ego: How the Special Olympics Organization Embraced Universal Design with Jen VanSkiver

Sports can be critically important to a child’s development and even their family’s place in the community. That’s why our kids, regardless of ability, deserve more than a church basement to hone those social connections and their skills as athletes!


In today’s episode, we’re interviewing Jen VanSkiver, Chief Officer of Strategic Growth for Special Olympics of Michigan and her daughter’s biggest advocate.


You’ll learn how Jen has helped to facilitate the creation of a first-of-its-kind Unified Inclusion Center, how its stakeholders informed the building’s design, and why this project serves so much purpose for everyone, not just people with disabilities. Listen in now to hear how we’re changing the game of unified sports!


Also, don’t miss the very end where Rylan shares his own experience with unified sports!



In this episode, you’ll learn...

  • [11:42] What led to Jen’s work at Special Olympics

  • [22:07] What the Unified Inclusion Center is and why it exists

  • [31:57] How stakeholders contributed to the design discussions

  • [42:55] The Last Word





If you just can't get enough of us, don’t forget to join our newsletter and check out our other projects.


About Jen VanSkiver

Jen is the Chief Officer of Strategic Growth for Special Olympics of Michigan. Together with her daughter, Lilly, she has helped to facilitate the creation of a first-of-its-kind Unified Inclusion Center. Her role has been critical to the project’s goal of providing an inclusive space where every athlete, regardless of ability, is represented through systems that benefit all.


Resources for this episode…




Transcript for "Ep 20: Inclusion over Ego: How the Special Olympics Organization Embraced Universal Design with Jen VanSkiver"


[00:00:05] Gwen: If you have an appreciation for honest and sometimes irreverent conversations about parenting and walking alongside humans with neurodiversity, you're in the right place. I'm Gwen. [00:00:17][11.1]

[00:00:18] Kristen: And I'm Kristen, and together we have decades of experience parenting fiercely amazing neurodiverse humans, as well as teaching, writing, advocating, and consulting. All of this has provided us with an endless supply of stories of inspiring failures and heartbreaking wins. [00:00:33][15.6]

[00:00:35] Gwen: Welcome to You Don't Want a Hug, Right? We promised to come at you each episode as our true selves, sharing the hilarity and delight in the midst of the heart of our journeys. Most importantly, though, we hope to remind you of your immense value as a human being outside of the parenting role that you play. [00:00:54][20.0]

[00:00:56] Kristen: So grab a cozy blanket and a beverage and go hide in the closet nearest you. [00:01:00][4.1]

[00:01:03] Kristen: Gwen, it's snowing here. [00:01:04][1.0]

[00:01:05] Gwen: Oh, it's sunny here. I win. [00:01:08][2.4]

[00:01:09] Kristen: You do win. You do win. [00:01:10][1.1]

[00:01:10] Gwen: So win. I never win. But I win. Yeah. It's like 60 degrees. Wow. And sunny. Isn't that amazing? [00:01:19][9.2]

[00:01:20] Kristen: It is amazing. [00:01:20][0.3]

[00:01:21] Gwen: I have a lot pep in my step. [00:01:23][1.3]

[00:01:23] Kristen: I bet. [00:01:24][0.3]

[00:01:25] Gwen: We have a really fun episode today. But before we bring our friend Jen into the mix, I am wondering if I can please lead with a Reaganism today instead of a Rylanism. This has never happened in the history of the pod. Do you think you're going to be okay with that? [00:01:43][17.1]

[00:01:43] Kristen: I think I can work with that. I'm going to bring in Jameson, then a Jamesonism. [00:01:47][3.4]

[00:01:48] Gwen: Oh, good. Okay. I might just need some advice. So before we, like formally introduce Jen, I'm going to invite her into this conversation because she is also a mother of two girls who are past the age of 13. And then we'll formally introduce Jen, my daughter. Is in this stage of life where so many of the words she says, I don't understand. And I think it's lingo but she'll say things to me like, like she has the mutual crush which is big news this week. Very big news. She texted me about it. I have news and the texts. [00:02:27][39.5]

[00:02:29] Kristen: I have news. [00:02:29][0.5]

[00:02:30] Gwen: I'm old news shared must consume. Never listen to this because she thinks we're so boring. [00:02:34][3.9]

[00:02:36] Kristen: That's my hope at this point too. [00:02:37][1.3]

[00:02:38] Gwen: Her response once I'm off the market. And so then she describes to me. So I have a crush on him and he's like totally glowing up from last year. Glowing up. And I was like, oh, did you mean like he's growing up? She's like, I'm not even going to try to explain this to you. Help me. What did I do wrong? What am I missing? What is this glowing up in language that she's using because she refuses to describe it to me? Because I don't think she thinks I'm capable of getting in with the lingo. And then she says things like, oh my gosh, look at her. Gelatt. Yeah. [00:03:26][48.3]

[00:03:26] Kristen: What gear is that, like a car? [00:03:29][2.3]

[00:03:30] Gwen: No, it means but. [00:03:31][1.1]

[00:03:32] Kristen: Oh. Yeah. But interesting. [00:03:35][3.3]

[00:03:36] Gwen: So what do we do when our kids start speaking this language? Do we embarrass them fully and try to, like, look at the Urban Dictionary and try to keep up with it? Or do we just stay, like, become the old nerdy parent that we're destined to be? [00:03:52][15.8]

[00:03:52] Kristen: I think just like the progressive commercials, we should lean in and very awkwardly use the lingo. You do? Oh yes, I absolutely do. Case in point, I was texting with Jamie. Well, Jameson texts me quite often. It's very stream of consciousness. It's always anxiety ridden and it's very often hilarious. But the latest when I got was, okay, hear me out. What if I got a perm? And I said, oh, shut up. Oh God no, he says, stop. You know, I'd look good for real, though. I want to find a way to make my hair curly, like wavy. Or curly a bit. And I said, maybe, if still super short on the sides, since you're all about your glow up phase. See how I did that? Do you see how I did that? And the response was not loser. [00:04:46][53.3]

[00:04:46] Gwen: Hold on, you said glow up? [00:04:46][0.3]

[00:04:48] Kristen: I said, yeah, yes. Who the hell are you? I know, and then he said, yeah, that's what I was going for. I don't want a full blown perm. And okay, we'll do. Stop. You know me so well. I am glowing up. [00:05:00][12.4]

[00:05:05] Gwen: What? Jen Skiver. Do you know what glowing up means? [00:05:07][1.9]

[00:05:08] Jen: I do let me impart some wisdom here. So the glow up? Yes, the glow up. So I will. I will now, introduce my daughter, Lily. So. Two daughters, so CJ, 23, today. She's going by Claudia. Tomorrow might be CJ again. So, okay, we. [00:05:25][16.9]

[00:05:26] Gwen: Is that her name? [00:05:26][0.1]

[00:05:27] Jen: What's part of the glow up? Oh, yes. Oh, look. So we called her C.J. k some. Her name is now Claudia, right? Okay. So. Yeah. And any who. She's not wrong, but there it is. [00:05:36][9.1]

[00:05:36] Gwen: But hold on. Is that on her birth certificate? [00:05:38][1.3]

[00:05:38] Jen: Yes. [00:05:38][0.0]

[00:05:39] Gwen: Oh, okay. [00:05:40][0.4]

[00:05:40] Jen: Well, do you. Jane. Claudia. Jane. Oh my God. Okay. So anyway, so part of Claudia's glow up includes using her given name, right? Because it's more beautiful. It's more sophisticated. And she told me it's more she goes, man, it's totes more professional. Oh, do you see what I did there? Did you see what I did there with the time. [00:05:58][17.9]

[00:05:58] Gwen: I got that one. I got that one. [00:05:58][0.2]

[00:05:59] Jen: Okay. So also so Lily is the one who got me on that and I say totes all the time. So I am 100% with you guys about introduced. Just going with it, leaning in as it were. Okay into the language. Use it wherever you can. Hopefully your the context is right. [00:06:17][17.4]

[00:06:17] Gwen: Oh it's never right. [00:06:18][1.2]

[00:06:19] Jen: But there is a danger. [00:06:20][0.9]

[00:06:21] Kristen: If you're lucky, you can embarrass them spectacularly. [00:06:22][1.8]

[00:06:24] Jen: Couldn't agree more. Couldn't agree more. So Lily will say to me, when that happens, you'll know. By the way, there's a foolproof indicator because whether it's on text or in person or whatever you're going to get, if you're in person, you'll get a look, right? We all know the look and what their face is saying, which sometimes, often comes out of their mouth, is stop. Just stop. You're making me feel embarrassed for you. But but like, yeah, exactly. But that never comes out. It's just this look of just abject horror. Yeah. And the words stop. [00:06:53][28.9]

[00:06:54] Gwen: Yes. Like they're dying inside. [00:06:57][2.6]

[00:06:58] Jen: And outside. And, yeah, they're dying in every possible way. So that. That's my wisdom. Lean in. Go for it. But when they say stop, right, that's the hammer coming down. So just quiet and just retreat the best you can. Try to save face and live to fight another day. Yeah. Okay. [00:07:15][17.1]

[00:07:16] Gwen: Okay. So the glow up just means like, we're like. Like finding our best self or like. Yes, reviving ourselves. [00:07:23][7.0]

[00:07:24] Jen: Well, Lily, Lily will talk about her glow up. We recently she was home. She has an extended vacation over the holiday because her her school has this, you know, longer break in it over the holidays. So she was home with us for almost two months and which so bored, bored to death, wanted to die. Anything to go back to school. She goes to Miami, of Ohio, to college anyway. So we we decided to embark in looking through some photos, and that's literally how bored it got for my 21 year old daughter. We're going through these photos and she's bringing out, I mean, she God bless her curly hair, very curly. Jameson might appreciate this. Please don't go down that road because we're always working to get it the opposite way. So she had this wildly curly hair, unreal, buck teeth, just unreal. And I can attest to that. Thousands of dollars in orthodontics, thousands the teeth, the whatever. And she was tomboyish, right? Like very sporty and always wore her hair slicked back into a braid to the side that was just 46 on the daily. On the daily. Right headband. Yes. So you know. Right. The 2000. And she goes, oh my God, I had a glow up. Oh. So so like, I know I'm using it in the right context and I. Okay. Because I'm repeating what she said. So. Right. Yes. But my feel was when she said that I thought, well, first of all, I thought to myself, you're damn right. That was like, I can't believe I let you walk out of the house like that. That was my initial thought. [00:08:47][82.7]

[00:08:47] Gwen: But then, honey, also because I paid so much money for your teeth. That's right, I agree. Yeah. You're welcome. [00:08:53][5.5]

[00:08:53] Jen: A realized investment there. But also I thought, good for you. You know, I thought she's like, you know, she's in herself now and she's like that. You know, I made it happen. I'm in my own skin. I'm pretty. I love that, and I love that. I like that self-confidence, you know? [00:09:09][15.4]

[00:09:09] Gwen: Good job, Lilly. All right, well, the boy that she has a mutual crush on has glowed up. Still might have a little bit of a unibrow, I'm told, which I think is phenomenal. We could do this for hours, but I want to bring us back around and formally introduce our friend Jennifer Urban Skiba. So Jen and I met. I don't even remember how we met. It was a phone call. [00:09:35][25.6]

[00:09:36] Jen: It was. [00:09:36][0.3]

[00:09:36] Gwen: Referral from maybe Justin. Yes, across the street from me. So he lives across the street from me, by the way, and we ended up talking and just like connecting. And she invited me to come. So Jen is the development director. Is that your official role? [00:09:51][15.1]

[00:09:52] Jen: Partly, yes. Yes, I have kind of a silly title, but it's chief officer of strategic growth, so I control all the money coming in. Right. So through philanthropy, but also revenue generated by our facility, which I know we'll talk our unified inclusion center, which will probably talk a little bit about. And the idea is for me to ride sidesaddle with our CEO in support of our board to figure out programmatically or marketplace position for us to continue to expand. [00:10:19][26.6]

[00:10:20] Gwen: And us is Special Olympics of Michigan. Correct. So the we have this amazing facility that Jen will tell us more about that I now work out of as a part of the Down Syndrome Association for West Michigan. And so now Jen and I get to kind of like parallel work and share space and like dream all the dreams. So Jen brought my son Ryan and I in to do some consulting on wayfinding, which means how do we get from point A to B and how do we make that an inclusive and very comprehensive process? And long story short, I showed up in the building and I'm like, hey, she's like, I know you and why are you here? And I said, I work here now. So now we've been able to spend more time together. And I just knew that we had to have Jen on, because what's happening in this building that we rent space out of is never been done before. And it's being studied and looked at closely by not just Special Olympics around the world, but construction companies and architects and everybody in between because of the uniqueness of this project. So to start us off, Jen, you talked about your daughters a little bit. You're also married? [00:11:39][79.1]

[00:11:39] Jen: Yes. I have a husband, Tim, as well. [00:11:42][2.1]

[00:11:42] Gwen: Great. Tell us what led you to your work at Special Olympics? Because you were involved with them before you were employed by them, correct? [00:11:51][8.8]

[00:11:52] Jen: I was, yes. So my path to Special Olympics is somewhat it's very natural. But it took me a while to to realize where I was headed. So, you know, just kind of it was I don't know what the word would be. It was just kind of like a cosmic force. I feel like, you know, as I look back now, all roads lead to here. But at the time it was very, very difficult for me to see what was around the bend. Right. And so my background, my education, my training, my previous experience is all in strategic planning, strategic leadership, some consulting, some corporate gigs, doing that. Philanthropy, also marketing and communications. Most of my, my jobs have been in the health care sector, whether consulting or working directly for hospitals. My immediate past job prior to coming to Special Olympics, Michigan was with, a health care system about 45 minutes from Grand Rapids here out on the lakeshore. My role there was to work in strategy and communications and market position and to help facilitate a merger for that independent hospital, joined a larger system. So for the last 15 years of my career, I've been immersed in that all along. And if so, like 45 minutes away, kind of a key point of the story. And so I would have, you know, roughly two hours a day in the car to kind of get my game face on, to go to work and decompress on the way home, which made it very easy for me to have, you know, kind of a bifurcated life. Right. So I'm work. I'm here. My life with my family is over here. And you know they never shall meet. And the physical proximity gave me that opportunity to keep things separate. And I guess in some ways I realized there was a goodness to that. So I was bringing home the stress. I already had enough stress in my life, right? So I can kind of keep those things separate. [00:13:44][111.8]

[00:13:45] Gwen: But I just wanted to stop there because I love that you just talked about a commute, which a lot of us would be annoyed by, as this intentional way to separate your two existences. [00:13:54][9.3]

[00:13:55] Jen: Exactly. [00:13:55][0.0]

[00:13:56] Gwen: I think we all just need to, like, sit with that for a minute, because you could just see that as annoying. And I'm going to sit in traffic on the highway. But I love that perspective of how are you going to use that time in the car to get back in a mode where you're with your family because Jen has a neurodivergent daughter, and so home life is intense and always has been so. All right. But I wanted to just highlight that because I thought that was a really beautiful way to think about that. [00:14:24][27.8]

[00:14:25] Jen: Thank you. I appreciate that because there was a lot of shame associated with that for a long time for me. You know, people would say, gosh, you know, I don't know how you do it. So much time away from your family or there'd be pressure in the workplace, you know. Oh, well, you know, I mean, you know, let's we have to have Jen there, but let's take into consideration her commute. You know, just felt like you couldn't be anywhere fully. Yeah. And so there were, like, everything, you know, there's a good side and a bad side, and it's just learning to live on the edge of that or, you know, on the fence with that. And I did for 13 years and, you know, health care, in the last few years. I don't need to tell anybody. I mean, everybody knows that it's an extremely stressful environment to be in through code in any time, in any capacity. Health care is stressful. You know, obviously it wasn't direct patient care, but this even just the strategy of health care is a nightmare in America. And so then you add Covid on top of that and the politicization that happened. And I was the chief spokesperson for the system. So there were times I had to be walked to my car and that takes a toll. So, in the meantime, while all this is happening in my separate life, you're back home. My daughter had been doing very well with in Special Olympics. [00:15:36][71.1]

[00:15:37] Gwen: Claudia. [00:15:37][0.0]

[00:15:38] Jen: Thank you very much. You appreciate that. And she, in fact, will be listening to this podcast. So I'm very glad that you got that straight for me. Yes. Claudia. And so Claudia, a basketball player, a bocce player, a track player got started when she was in eighth grade, just going into high school on the basketball court, playing a unified game for her high school. Unified. What does that mean? That means, neurodivergent individuals playing with those who have no cognitive impairments. Right? Unified or playing together. Same court, same game, same time. We're building friendships, rapport. We're learning together. [00:16:11][32.8]

[00:16:12] Gwen: And that's through Special Olympics. [00:16:13][1.3]

[00:16:14] Jen: Correct. That is a Special Olympics patent. [00:16:16][2.6]

[00:16:17] Jen: I didn't know that. [00:16:17][0.6]

[00:16:18] Jen: So we go yeah. And so she got involved with that which was great. And obviously we're donors. Obviously we're volunteers. Obviously we're doing all of that. And she's kind of going on her merry way and she's doing a number of things. Special, of course, also has an amazing capacity, which fewer people know about than I'm comfortable with. They have an amazing capacity to be able to see the light go on inside our athletes. And for many of those athletes, it's the very first time. It's like a birth when they hear their name cheered by people they don't know. [00:16:49][30.9]

[00:16:50] Gwen: And we just let our last episode talking about Rylan's moment. [00:16:53][3.5]

[00:16:55] Jen: I heard that, and in fact, I've seen that video and it is and I've lived it. And as I think I told you, my favorite thing to do at Special Olympics competitions now is to not look at the athletes in those moments. Who I focus on now, or the parents or the loved ones in the caregivers, because that's just as beautiful a moment to me. And I need to I need to find that connection. [00:17:18][23.1]

[00:17:18] Kristen: The snot running down Gwen's face, she sobbed. [00:17:21][2.8]

[00:17:23] Gwen: I knew she was going to say that because she knows that I was like. Screaming and sobbing and Rylan's like, oh God, she's mom. [00:17:33][9.2]

[00:17:33] Jen: Well, you know, mom, you could use a glow up. [00:17:35][1.7]

[00:17:38] Kristen: You need to run around with the makeup team. [00:17:39][1.1]

[00:17:40] Jen: But that's 17 years bottled up coming out in that moment. [00:17:44][4.2]

[00:17:46] Gwen: Yeah, that's waiting for, like, athletic success or my son's running. [00:17:50][3.6]

[00:17:51] Jen: Yeah, yeah, yeah, that's a release of grief. [00:17:53][2.5]

[00:17:54] Gwen: Yeah. For sure. [00:17:55][0.9]

[00:17:55] Jen: That's the first time experiencing that type of joy. That's a lot wrapped up in a moment like that right now. So, so these moments are happening for her and continuing to spiral in my depression inside the health care realm. And she is, but she is selected to be an athlete representative on a capital campaign for Special Olympics Michigan to buy and renovate this former high school and turn it into the world's first unified sport and inclusion center. Now we can talk a little bit more about all that, all the context that goes with that title. And so in that capacity, you know, we're going to the meetings and we're we're giving donor tours. That's her job. You know of the facilities is what it's going to be. And kind of sharing her perspectives on that to excite donors, which she's very good at. Thanks to Special Olympics training, the CEO walked me to my car and out of my car after one of these such tours, and rhetorically, I now recognize asked me, so how's your job going? And I, I am actually in therapy weekly, so I'm quite sure I'd already vented to somebody. I was paying to hear this, but something in that moment is something in that moment. I don't know what it was, but I just unloaded on this poor man and let it all come out. And I kept talking and piling on. And he's just a lovely person. And he let me run out of gas and then followed up with a very short but extremely powerful comment, which is, I'm not 100% sad to hear that. And I hope you don't take that the wrong way. Because I see. I see it now. And that led to, you know, six months of conversations trying to figure out how Special Olympics could rescue me as they had my daughter. And two years later, we're sitting here today talking about it. And I'm really I'm really delivered in so many ways now. My life isn't separate anymore. And people worried about my mother worried about that. She said, you know, this is all this is all day 24 over seven, right? Like you're 711 now. Are you ready for that? And I just was. [00:20:07][132.1]

[00:20:08] Gwen: It's a fair question. [00:20:09][0.6]

[00:20:10] Jen: It is a fair question. And I appreciated it coming from those who were closest to me and have seen me in all states. Right. [00:20:17][6.8]

[00:20:17] Gwen: Because Kristen and I live our life and then we also work our life in so many ways. Yeah, and Kristen's done that. But but we've had conversations on this podcast about there wasn't a choice. We had to make it our work because we were so intensely living it and breathing it, that trying to do something that didn't understand it or connect to it just were soul crushing. [00:20:47][29.8]

[00:20:47] Jen: Yeah, it increased the isolation. I think having your work life in your home life about disability gave me a lot of gratitude for seeing what other families are going through, but it also normalized my life to such a large degree that I could operate and feel. Connected and feel gratitude instead of feeling so isolated. [00:21:10][22.5]

[00:21:11] Gwen: So you finally got that opportunity. [00:21:13][1.7]

[00:21:14] Jen: I did see. So here I am talking to you guys about, you know, whatever this generation is called, our neighborhood is, but talking about their lingo. I'm giving you wisdom now. You're giving me this wisdom. It took me 13 years to get through that grieving process, and I feel like my. What's the word? What's the word? My banishment. Self-determined, right, I did. I made that choice. I just couldn't absorb it. Couldn't absorb it. And then I reached just this, I don't know, just this moment where the dam burst, and I just. I had no choice. I mean, so I am so grateful that someone recognized that in me. Someone recognized that me who could do something about it. Yeah. I just saw. And saw in that reckoning an opportunity not just for me personally, but professionally and, you know, corporately for the for the for an organization, you know, way to channel it. [00:22:06][51.7]

[00:22:07] Gwen: Yeah. So you started there. Talk us through I mean, we could talk about the building for hours and you can very well and then everybody will give us $1 billion after you're done. But first, we love them to give us money to pay for the podcast. So let's let's just start start there. But talk us through what this building is and why it exists. [00:22:30][23.4]

[00:22:32] Jen: So it started off as a way for us to deal with the very real and very immediate problem in a very unique way. The real and pressing problem we are trying to address is our athletes don't have anywhere to practice. They barely have anywhere to compete. And at this time, you know, just prior to Covid. So. So 2019 is where we are in this moment. He was getting worse and worse and worse. I mean, you see all of these new companies sprouting up for travel, volleyball and travel. This, you know, for our neurotypical population. High schools are overrun. They don't have any more gym time. And you got varsity teams practicing at five in the morning. It just to get through all the teams through the day, you know, I mean, just it's a very real and pressing issue across the board. So what do our, our athletes typically get? Well, you know, they get a donated, you know, church basement at, you know, 7:30 p.m. on a Sunday. You know, well, how convenient is that for coaches and athletes. How inspiring is that. And in fact, I would say it goes the other way. It's extremely depressing. And the signal that that sends to our families and our athletes is, it's nice that we can help you, but you're not a priority. And our kids know that. Our kids feel that. They feel it. They absolutely feel it. You know how I know they feel it? Because when you see them walk into our facility that has their logo on it. And you hear the cowbells go clang, clang, clang, clang. You see the saints go up with their names on it. When you see a building named for them. Yeah, look at their faces there. Right. It is a privilege to be there, and they know it. So they don't just walk in the building, they run in, they skip it. Right. The whole demeanor completely changes when you're in an environment like that, that that knew you were coming and anticipated who you were. You know, it welcomes you. It is your son Paramount. It frankly. [00:24:29][117.6]

[00:24:30] Gwen: Well, it doesn't just it doesn't just welcome you like that's inclusion. It invites you and that's belonging. [00:24:36][6.2]

[00:24:38] Jen: Right. Yeah. You know what? What are we've kind of coined with our architectural group is we want everybody who comes in this building, regardless of ability. We want everyone who comes in the building to feel like they. We knew they were coming. Right. We just knew they were coming. It's that easy. I'm really proud of what we have accomplished. It starts off by us trying to to secure playing space and practice space for us. Right. I mean obviously high schools have that, you know, built in to the system. But then of course, you think to yourself, well, high schools also have classroom space. They have meeting space. They have, you know, entertainment space like auditoriums and things. What what what in God's universe are we going to do with that? So we think to ourselves, okay, well, if objective one is met. Now we've got all this extra space. What do we do with that? Well, good way to pay for the building would be to get some other to get some tenants in the building. Let's get some partners in the building. Let's get some people in here who might want to rent this space. Right. And so we thought we might get 1 or 2 nibbles on that. Right. Had some early conversations, and then all of a sudden word gets out we have a waiting list. So all these companies want to come in. And not only do they not want to rent space from us, they're willing to put a capital investment to build out the space, and that that's because they're used to working also in a basement somewhere. You know, now, the criteria to become a tenant in our space, you must have two things. You must be a nonprofit. And you must serve the intellectually disabled community in some way. That's it. That's literally it. And so we have this waiting list of organizations that want to get in, and they're all doing their own fundraising to build out their space. And it's just it's beautiful. So we own the building. We take care of all the common spaces. And then our tenants have their own space. And the idea was to be able to have the practice and competition space. Yes. But also, as a parent, I've often felt like I was literally bumping around in the dark, hoping to run into that. This program that was going to be the silver bullet for my daughter or this service that's going to be amazing. And you get the mom network. Everybody's chirping in your ear, we got to do this. You got to do that. You got to try this and you do, right? You run around, like with your hair on fire. Yeah. Making the calls, showing up at the appointments, driving across town, taking PTO days. You're doing it all. And wouldn't it be nice. [00:26:58][140.5]

[00:26:58] Gwen: And most often you quit your job because you can't do it all and work. [00:27:02][3.4]

[00:27:03] Jen: That's correct. That's correct. In, in our, in our case. Oh and not to mention all the other, you know, medical appointments you're doing and you know, therapeutic and different things. So add on to that. So it's it's both the managing of the situation and the searching for the next thing. Right. And so in our situation, you know, my husband is the one who lost those jobs. You know, because I had the job I was out, you know, I had this trajectory job and he was the one here. And and so we went through that too. So you get back to the building and we have this whole new collaborative space with all these companies that we're kind of serving. We have a lot of overlap. We're kind of serving the same people. [00:27:39][36.0]

[00:27:40] Kristen: It's like a hub concept. Yeah. Yes. [00:27:42][2.2]

[00:27:43] Jen: And so you have like I'll use my friend Katie Venn in is a great example. Right. So she is in her late 20s. She has down syndrome. She is a part of the Down's syndrome community. She is a leader in that capacity. She does cooking classes. She does all the things that they offer. Guess what else? She's also a very decorated Special Olympics athlete and a leader. She is a speaker for us and she travels around, you know, sharing the good word. But she also receives services from disability advocates, which is in the building, you know, to help her with your benefits, to help her find services. She's a known entity there, community Living Services, which is a case management organization. She can dip your toe in those waters as well. So we have so many of these individuals who can do so many things when they're in one spot. What a gift. [00:28:34][50.7]

[00:28:35] Gwen: And it's a spot that's built for them with them in mind. [00:28:39][4.0]

[00:28:39] Jen: Yes, yes. And thank you, Gwen, for bringing it back to center. And I will, in full transparency, let you know that the project was always to do it with our stakeholders in mind. Right. Very careful in mind. And so we would include, you know, different stakeholders in different conversations. But as we learned very quickly, inclusion isn't the goal. Right. That's just right. You can come to the table. But what do we do with that. Right. And what we learned very quickly is that in these design decisions, in the choices of paint colors and the choices of furniture, in how we represent the signage in the building, how do we represent even just the audio in the building from a sensory perspective, or a deaf and hard of hearing perspective, you know, how do we manage light? How do we manage this environment? How do we how do we get it to the point where whoever comes in feels like we knew they were coming? How do you do it? And I think the design committee was very afraid. Yeah. Very afraid. And when we got into it, it, it it did. There were a lot of very, very tense conversations. You have everybody's well-meaning. Everybody wants to get to the end goal. But there's literally no process to do this. There just isn't. There is these words like universal design and inclusive design that are out there being studied. Really, I wouldn't say that there is a patented approach. I think everybody's doing their best to figure it out. Yeah, and so were we in real time, you know, with a depreciating asset on our hands, trying to figure out how do we get it, how do we get it open. And, you know, do you get your architects wanting it to look beautiful. Right. And then you have your furniture companies wanting to get you the coolest stuff, and then you have your signage company saying, yeah, but those are muted colors for our signs to be understood and recognize. They got to be bright. Then the architects come, interior designers coming back and saying, oh no, but that's terrible. Like that's so it's a cacophony, right? And then you have so it's it's back and forth and back and forth. And so we're very lucky that all of our vendor stakeholders really did want to get to the optimum. And so we had to have some really serious heart to hearts. And we had to say that what I need you to do is when we come into these sessions, institutional hats come off. Collaborative hats. Come on. Okay, so I don't care who you work for when you come into these meetings, it doesn't matter to me. So don't even wear a branded jacket. If you're gonna wear anything branded, make it Special Olympics Michigan, because that's who we're here to serve. And it was very easy for me at this moment in time, because I'm still going back home to my daughter. Right? Like I get a gut check on the regular. Yeah, I'm looking at her and I'm thinking, what would. Literally, like, I have a bracelet. What would CJ do? [00:31:20][160.2]

[00:31:23] Gwen: Claudia. [00:31:23][0.0]

[00:31:23] Jen: Claudia. Thank. Yeah. So we go through this process. There's, you know, a lot of negotiating, a lot of tense moments. But it came out beautifully. And I think what we've done here is we've got a lot of. So like I said, all of these different participants who are now recognizing this in fact, is a research incubation center, and they are investing like that. So I say investing because I'm not receiving donations from their marketing budget. I'm receiving donations from their DNI, HR budgets and receipt. I'm receiving investments from their corporation. [00:31:56][32.9]

[00:31:57] Gwen: And I think, Jen, if we can step back, I think what's important to mention is that you didn't just bring these professionals into the conversation. You brought stakeholders who are using this space into the design discussions. [00:32:13][16.1]

[00:32:14] Jen: You had nothing, nothing for us without us, right? [00:32:17][2.4]

[00:32:17] Gwen: Right. [00:32:17][0.0]

[00:32:18] Jen: So the one that I love is we had run through this inclusive stakeholder situation. We had done it in a series of zoom meetings over a six week period, and Steelcase led. This actually says Steelcase is Inclusive Design Team, which is not headquartered here in Grand Rapids, where their mothership is. It's headquartered in Munich, so it's a global reach. And so they are running this little stakeholder vignette virtually. We have representatives from all of our tenants. Right. So from Down Syndrome Association, disability advocates, autism support, all of it, our athletes. And we've gone through this now for six weeks. We've collected all this information. We think Steelcase has come back with a proposal to us. I'm ready to sign. $650,000 furniture order. I'm ready to sign and we think to ourselves, you'll be really fun. Why don't we just get the rope and we'll bring them over to Steelcase to showroom. We'll kind of set up some of the things that we think, you know, that we're going to we're going to do for them and get some photoop out of it. Right. Who's not up for that? So we do. We bring everybody over there and we're all excited. We're ready for them to walk in and and show us all this gratitude and excitement. And what happened was a disaster. They were repelled, repelled by what we had assembled. And and how I know. Is it because they said anything? They just literally didn't go in. And then they start wandering, going over here and over there to other areas that were not set up for them. And so now all of a sudden, I'm thinking to myself, shut the cameras off. This is awful. I mean, oh no. And then Steelcase said, put the cameras on and get moving. Follow these folks around. Ask the questions. What are you thinking? What are you feeling? Why did you come over here? What didn't you like about that? What do you like about that? Why are you sitting here? Move around. What are you doing? Why are you spinning in that chair? And this went on for two hours. Needless to say, we scrapped the entire order. We went back to the drawing board and we incorporated in there what our stakeholders told us they wanted. No, we thought we had done that in the first place. But guess what? What we learned is that our stakeholders aren't going to communicate in the same way that we do. We had we had some nonverbal participants whose parents or caregivers were communicating on their behalf. Right. I'm one of them, and I think I know what my daughter needs. I think I do know I'm well intentioned. Her mother, who knows her better than me. But what she needed was to immerse yourself in options. That's what she needed. And then she needed us to give you the paintbrush and let her color do it. Draw pictures about how you feel. Don't pick a multiple choice question. That's not how they communicate. It's not how it's expressed. We didn't give them the platform they needed to provide their feedback, so they provided what they could. And we made assumptions and interpretations based on that. And what we got was a disaster. [00:35:22][183.9]

[00:35:23] Kristen: That is such a microcosm example of what happens for our family members every single day. Right. They're operating. [00:35:30][7.6]

[00:35:32] Gwen: In every environment. [00:35:33][0.7]

[00:35:32] Kristen: In every environment. They're operating in a system that's giving them options that are not the way they communicate, right, or experience the world. [00:35:41][9.1]

[00:35:42] Jen: Right. Just retrofit yourself. Make do. Exactly. And, you know, because you're a beneficiary, you're lucky. [00:35:48][6.4]

[00:35:49] Gwen: Yeah. [00:35:49][0.0]

[00:35:50] Jen: So I'm a big proponent, as we all are at Special Olympics Michigan, of recognizing our people as just that, people with, you know, three dimensional lives and meaningful contributions waiting to be given. [00:36:03][12.3]

[00:36:04] Gwen: How humbling was that experience for you? [00:36:06][1.9]

[00:36:06] Jen: Oh. Oh, Gwen. Extremely. I love my daughter more. Than words could ever express. And I've done the best I'm humanly capable of doing to make her life as the best it can be. And I don't take any decision I make on her behalf lightly. The realization that she is capable of making better decisions for herself than I can. Mom is. Got. Really? Transformational and I didn't see it. I didn't see it until I went through this process. This process I'm actually paying for. Like, right? And I was doing it totally wrong. Extremely humbling and I think humbling for all involved. I mean, I mean, you, Steelcase, you people who had volunteered their time for this, for this project and many of them have deep connections to our community, you know, familial relations or, you know, people in their lives or loved ones who have intellectual disabilities. So nobody, nobody was there to make a buck. But we sure, we sure needed to be taught. And the teachers, we just didn't recognize who the teachers were. Yeah. So. So now we've done that. And so what has happened is our wayfinding has followed that path. Obviously the first sure selection is follow that path. Our tech company is following that path. In fact, our tech company which did all the audio visual for the building, knows we have our auditorium yet to be wired, and the tech company we're working with is now in relationship with the same tech company that did The Sphere in Las Vegas and the Sphere in Las Vegas. That company is interested in understanding what we're doing, because they feel that they have an incredible opportunity to learn in our environment. And so they're very, very interested in flying us out to Las Vegas in three weeks and bringing some stakeholders there to have us try what they're doing and make a huge investment in our building. In the hopes that they can learn. [00:38:05][118.6]

[00:38:06] Gwen: Hmhm. [00:38:06][0.0]

[00:38:06] Jen: And their whole system is based on AI. And that's so funny. Is that so funny? Right? I mean, we think, what does I have to learn? But it's got to be populated by the end user. [00:38:15][9.0]

[00:38:16] Gwen: And so I is not populated by the end user. That's the main problem with AI. It's pulling from what's out there. And our stakeholders are not out there the way that that's the thing. [00:38:28][11.7]

[00:38:28] Jen: Yeah they know it now. Yeah they know no. But but what we've learned through this process, you and I've talked about it multiple times, Gwen, when we solve, you know, these these designers came at it seeking. God, this is intractable. I'm never going to be able to solve for all of these competing interests in one. Environment's never going to work. But what we ended up finding out, it's not about don't panic about pleasing all the people all the time. Don't do that. Approach the situation by making it simple. Simplify it. So when you solve for complexities through the lens of simplicity, everyone benefits. Literally everyone benefits. [00:39:07][38.5]

[00:39:08] Gwen: That's why it's called universal design. [00:39:09][1.6]

[00:39:10] Jen: And that's how we should be approaching every project. So this isn't this isn't a handout. This isn't a nicety for our community. Our community is leading the charge to simplify systems for the benefit of all. Our people are now the number one asset. Now how about that? That gets me up every day. Lights my fire. So you bet you'll fly anywhere you want to take me. But I will do so in the background. I'll be the fly on the wall. [00:39:39][29.0]

[00:39:40] Gwen: Why? Because Claudia will be with you, leading the charge. [00:39:43][2.6]

[00:39:44] Jen: She says unfortunately, she doesn't have sensory issues. To deal with, so she won't be making the trip. And that's okay. That's okay. But I. Anyway, I am thrilled to say could be. And people are often really surprised. They're like, wait a minute. What what is Special Olympics have to do with any of this? I mean, this is so big. This is such a rabbit hole. What is Special Olympics have to do with any of this? Well, Special Olympics is a global inclusion movement posing as a sports organization. But. Right. That's what we are. We're in the schools. Like in Michigan. We're in 500 plus schools. We're in every single zip code in the state, run every continent. There isn't a corner of the Earth where a person can go, where Special Olympics isn't existing. And the inclusion movement is happening. And I love that it's happening at a grassroots level. I love that it's not happening from a top down mandate. I love that it's being adopted and welcomed and brought in, and I love that our people are leading, leading, right. They're leading. They're finding a voice because that's what Special Olympics does, is it turns the spigot back on. I mean, it turns the spigot back on in these athletes who probably from the age of 5 or 6, because they can't play in sports, they don't get invited to play groups, the parents lose their social network, the confidence goes down, the isolation increases. I mean, especially in America, sports is is critically paying for a person's development and a family's development in finding their place in community. [00:41:13][88.8]

[00:41:13] Gwen: We did a whole episode just on sports, didn't we? [00:41:16][3.0]

[00:41:17] Kristen: I don't think we did. I think we have to. [00:41:19][1.5]

[00:41:19] Gwen: I think it's on our docket because it it has. Well, we've talked about it in episodes how it has just like terminated friendships. Yes, yes. [00:41:29][9.9]

[00:41:29] Kristen: Because you're living such a, such a radically different life. Yeah, yeah. Sports is everything for most neurotypical families. But, Jen, I love I wish you could be a little bit more passionate about. Let's talk about our love and move my microphone back. I know, it's amazing. It's amazing. And I hope you raise a bazillion dollars because our families deserve it and you are incredible at it. But I wanted to say what a beautiful paradigm shift it is to have our family members be leading these efforts, and for you to have created a hub concept which not only promotes these things that we're talking about culturally, but it helps our adult children learn self-determination and independence when they can have access to all those different organizations in the same place. Because transportation is such a huge issue for our kids, and then they get isolated when they would have to go to five different places, if they could spend the day in your building and do a variety of things, it's life changing. So I just want to thank you for being with us today, and thank you for everything that you do. And we can't wait to hear about more of the exciting things that you've got coming. [00:42:46][76.6]

[00:42:46] Jen: Thank you ladies. More to come. Thank you so much for having me here. What an honor. [00:42:50][3.5]

[00:42:51] Gwen: All right, guys, we're going to hand it over to our kids. [00:42:52][1.8]

[00:42:55] Reagan: We know our moms are amazing, but they don't know everything. We think that you deserve to hear from the real experts. They're kids. We believe in nothing about us without us. So here it is. The last word. [00:43:11][15.7]

[00:43:12] Gwen: All right. It's been a while since we've had you on the Last Word, bud, but I'm excited to to bring it on back. Have you missed us? [00:43:20][7.7]

[00:43:23] Rylan: I guess so. [00:43:23][0.6]

[00:43:24] Gwen: Okay. You can pretend. Yeah. Yeah. So in the first part of our episode, I shared the story about how you've been on this unified basketball team through Special Olympics. And I have been so, so happy watching you play. So I would love for you to share with our listeners how you have felt about being on the team. Maybe like, how did you feel when you first started the team? [00:43:47][23.4]

[00:43:48] Rylan: Scared. Nervous. Not that motivated because, you know, it was new and I wasn't really into sports. [00:43:56][7.3]

[00:43:57] Gwen: Right? You had never really been on, full team like this, right? Yeah. So those were a lot of good emotions. How do you feel now that you've been doing it for a couple months? [00:44:08][11.8]

[00:44:10] Rylan: I'm excited for next game. Feel good about our last game. Except that one loss we had this year. [00:44:16][6.5]

[00:44:16] Gwen: But one loss. Pretty good record. [00:44:18][1.7]

[00:44:20] Rylan: Four to one. Yeah. [00:44:20][0.4]

[00:44:20] Gwen: You talked about having a lot of emotions when you're playing. Can you tell us more about that? [00:44:24][3.8]

[00:44:24] Rylan: Happy. Tired. Nervous. Energized. I know they cancel each other out, but. [00:44:29][4.4]

[00:44:30] Gwen: Yeah. So you said you're happy. You look forward to it. Right. But you're exhausted because does your coach let you just like putts around or she make you really work hard. [00:44:41][10.7]

[00:44:41] Rylan: Work hard. [00:44:42][0.4]

[00:44:42] Gwen: Yeah. Coach Lisa is amazing. [00:44:43][1.2]

[00:44:44] Rylan: I actually go back and forth back and forth back. [00:44:47][2.7]

[00:44:47] Gwen: Yeah. Sprinting right. Makes me real happy to watch you do that. [00:44:51][4.0]

[00:44:52] Rylan: Follow the ball. Yep. Yeah, yeah. [00:44:54][2.3]

[00:44:55] Gwen: And do you dribble over your head anymore? No. Nope. She taught you how to dribble down low, didn't she? [00:45:00][5.8]

[00:45:01] Rylan: Yeah. [00:45:01][0.0]

[00:45:01] Gwen: She's amazing. [00:45:02][0.3]

[00:45:03] Rylan: And with my left hand as well. [00:45:05][1.1]

[00:45:05] Gwen: Oh, I didn't know that. Can you share just a few things that you're really loving about? Playing on the team. [00:45:13][7.7]

[00:45:13] Rylan: Sharing good moments with friends, game better at basketball, playing good teams and winning. Living in a healthier lifestyle. Something to talk about to kids at school and at work. [00:45:23][9.9]

[00:45:24] Gwen: Your team has already become like friends, right? You guys have a group text that you share together? [00:45:30][5.8]

[00:45:31] Rylan: Yeah, they do constantly talk. [00:45:32][1.8]

[00:45:34] Gwen: Yeah, yeah, that's all right. And you've gotten better at basketball. We covered that playing good team. So there are some good teams in there. But you guys have a good record. [00:45:42][8.3]

[00:45:43] Rylan: Even against Maverick which we. Wait. My team before I joined lost to the championship. [00:45:51][7.7]

[00:45:53] Gwen: But you beat them. Yeah. What's the name of your team? [00:45:55][2.2]

[00:45:56] Rylan: The Rangers. [00:45:56][0.2]

[00:45:57] Gwen: The Rangers. [00:45:57][0.2]

[00:45:57] Rylan: Central. [00:45:57][0.0]

[00:45:58] Gwen: Yeah. And what color are your jerseys? Green. Your favorite color. And then you mentioned living a healthier lifestyle. What? Tell me more about that. [00:46:08][10.0]

[00:46:09] Rylan: Just working out. Losing weight. Sweating. [00:46:13][3.4]

[00:46:14] Gwen: Losing weight, sweating. You know, those are good things that you were just so opposed to before weren't you? Yeah. All right. And then last you said something to talk about with kids at school and at work. So what's the cool tie between work and your team. [00:46:30][15.7]

[00:46:31] Rylan: Because. Two of my teammates work with me. There's like two others that work at Forest Field. I don't see them, but. [00:46:39][8.1]

[00:46:39] Gwen: Total, there's five of you on the team that work at the same grocery store. Yeah, so they work for Spartannash and they just ironically called this morning to do of the article about how you play with other staff members on this team, which is so fun. [00:46:56][16.4]

[00:46:56] Rylan: Yeah. [00:46:56][0.0]

[00:46:57] Gwen: All right. Is there anything else? What would you say to kids who might be considering joining, Unified Team? [00:47:02][5.3]

[00:47:04] Rylan: Try your best. [00:47:04][0.3]

[00:47:05] Gwen: Try your best. Yeah. Words from the wise. All right. Thanks, buddy. [00:47:09][4.6]

[00:47:10] Rylan: Okay. Bye. [00:47:11][1.4]

[00:47:13] Gwen: Thanks for joining us for this episode. We appreciate you so very much. We sure love it. If you'd subscribe to our show and your favorite podcast app and rate us preferably with five stars. [00:47:25][11.5]

[00:47:26] Kristen: We love hearing from our listeners. So visit our website to reach out via email or through our voice mailbox. You can sign up for our free newsletter. Or better yet, join our communal closet where you can grow in community with us and each other. [00:47:40][14.0]

[00:47:41] Gwen: Get on in there by visiting YouDontWantaHug.com. See you next time.


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