Latest / The Wholehearted Enneagram Podcast / Walkin with Winston | a conversation with Brandon and Tiffany Yerxa

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Walkin with Winston | a conversation with Brandon and Tiffany Yerxa · The Wholehearted Enneagram Podcast

• 0:20
  SPEAKER_00: Hi friends, welcome to the Simply Wholehearted Podcast.
• 0:24
  SPEAKER_00: I sure hope you're enjoying our new music from the album down here and up above.
• 0:29
  SPEAKER_00: It's track 4 Heavenly Things, written by Carla Adolph and Ben Pasley.
• 0:35
  SPEAKER_00: I hope you'll go check out more at entertheworshipcircle.com.
• 0:40
  SPEAKER_00: Today's conversation is with some dear family friends, Brandon and Tiffany Yerksa.
• 0:46
  SPEAKER_00: They are some precious folks that are from Minnesota, as you'll be able to quickly tell at the beginning of our conversation.
• 0:54
  SPEAKER_00: I think you'll be really encouraged and inspired as you listen to their story of intentionality and purpose as they raise their three kids, one of which Winston, who was diagnosed with Down syndrome, they are really involved in this community of precious people, and they're all about bringing about awareness and help and resources to not only those in their area, but so many others.
• 1:23
  SPEAKER_00: I think any of us as parents who are walking through a diagnosis, maybe not of this sort, but of different kinds, of where um we might need to get some help for our kids with the different battles they are facing or might be facing, they just kind of talk through their process of identifying and grieving and reaching out and realizing that um it sort of takes a village to raise our kids because there's so many out there who have gone before us and who are eager and ready to share what they've gone through, their trials, their struggles, but also their victories.
• 2:04
  SPEAKER_00: And there's so much now readily available, not only to um those who have Down syndrome, but to so many other um unique um learning delays or disabilities or just disorders that um might be otherwise really limiting.
• 2:24
  SPEAKER_00: And nowadays there's so much more available to those who need resources and help.
• 2:30
  SPEAKER_00: And this conversation was just beautifully encouraging to my heart as a mom, and I think many of you will be able to identify and relate to just some of the daily struggle, and um I I think you also appreciate their vulnerable vulnerability and their their honesty in the process of what they're learning and how they're growing as a parent, um, as parents to Winston.
• 2:58
  SPEAKER_00: There is a ton of encouraging stories in here, and all of these we're gonna be linking to in the show notes.
• 3:06
  SPEAKER_00: Um Winston's um proud moment in front of the school, um, leading in um these affirm a daily affirmation in front of 500 kids, which is just incredible for this young man who's only eight years old, mind you.
• 3:24
  SPEAKER_00: And um, Brandon and Tiffany are really involved with a lot of different organizations in Minnesota.
• 3:30
  SPEAKER_00: One in particular is their annual walk-in with Winston, and that is this next Sunday.
• 3:37
  SPEAKER_00: They're still in fundraising mode, trying to reach their goal of 20,000 this year.
• 3:42
  SPEAKER_00: And last time I checked, they are so close.
• 3:46
  SPEAKER_00: So if this message moves your heart and you feel compelled to join in the fundraising efforts, and you know, just if it's$10 or$20, I know that it would bless and would go so far to help resource and encourage so many who are um needing help as they face their their circumstances and um how they can just navigate life a little bit better with some incredible resources that could be made available to them.
• 4:18
  SPEAKER_00: So even though I'm missing my um partner Ashley Pittman in this podcast, I think you'll really enjoy um the conversation and be encouraged and blessed.
• 4:41
  SPEAKER_00: This podcast has been brought to you by The Unseen Journey.
• 4:44
  SPEAKER_00: The Unseen Journey is an online community that is gathering together to talk and read through the book Unseen: The Gift of Being Hidden in a World That Loves to Be Noticed, written by Sarah Hagerty.
• 4:57
  SPEAKER_00: The Unseen Journey will be an encouraging place to share meaningful discussion and thoughts as we learn more about becoming a friend of God.
• 5:04
  SPEAKER_00: So whether you have time to cozy up with a warm drink and a favorite blanket while you read through the material and share your thoughts, or if you jump in during your lunch break and answer some of the questions and scriptures that are going to be shared throughout the week.
• 5:19
  SPEAKER_00: Or maybe you just can pop in while the kids are napping.
• 5:22
  SPEAKER_00: We would love you to join us there.
• 5:24
  SPEAKER_00: You can download the free book study that accompanies the book and we'll encourage you along your personal discovery week by week, chapter by chapter.
• 5:33
  SPEAKER_00: We'll hope you join us and we'll see you there.
• 5:43
  SPEAKER_00: Well, I um I wanted to talk to you and share kind of your story with my friends and a little bit of how I know you is that your brother, Roman, and my husband, Spencer, they've been friends since like 10 years old, I think, fifth grade, somewhere in there.
• 6:00
  SPEAKER_00: Yeah.
• 6:00
  SPEAKER_00: And I have heard lots of hilarious stories, ones that Spencer would probably never share.
• 6:06
  SPEAKER_00: But I think at some of the weddings and, you know, some gatherings, um, your brother, both your brothers are uh enjoy sharing all the mischievousness that they all got into back in the you know junior high years, especially.
• 6:22
  SPEAKER_03: That's they did for sure.
• 6:24
  SPEAKER_00: Yeah, yeah, they have some good ones.
• 6:25
  SPEAKER_00: So I those will have to be safe for another time.
• 6:28
  SPEAKER_00: Um, but we've gotten to meet um uh because of that at uh some weddings in there and and different times, and we come up um and visit Roman Michelle on occasion, which um we love getting to stay at their lake house last fall.
• 6:41
  SPEAKER_00: That was awesome.
• 6:42
  SPEAKER_00: Have you guys enjoyed a couple weekends up there?
• 6:46
  SPEAKER_01: We have.
• 6:47
  SPEAKER_03: We have, yeah.
• 6:48
  SPEAKER_01: Yeah, it's a great get away and it's nice and close to home, so it's it's easy, but it's just so relaxing once we get there, even though we're only less than an hour away.
• 6:58
  SPEAKER_00: Yeah, it's amazing.
• 6:59
  SPEAKER_00: It made me go, oh, maybe we want to find a lake house because that ease of like, you know, you can just, you know, after work, not even have to leave work early, you can go have this little retreat.
• 7:10
  SPEAKER_00: I'm like, that's that's where it's at.
• 7:12
  SPEAKER_00: Right, right, exactly.
• 7:14
  SPEAKER_00: I mean, you guys do have a few more options up in Minnesota than we do here in Missouri.
• 7:20
  SPEAKER_00: But I'm sure we can find something.
• 7:23
  SPEAKER_01: Yeah.
• 7:23
  SPEAKER_01: The land of 10,000 lakes gives us uh a few excuses to be by water.
• 7:27
  SPEAKER_00: For sure, for sure.
• 7:28
  SPEAKER_00: Yeah, that's a legit thing too.
• 7:30
  SPEAKER_00: I was looking at a map up there in their cabin and I was like, wow, that there's no joke.
• 7:34
  SPEAKER_00: There's got to be even more than 10,000, I think.
• 7:38
  SPEAKER_03: I think so.
• 7:39
  SPEAKER_03: I think so.
• 7:39
  SPEAKER_03: Yeah.
• 7:40
  SPEAKER_00: That's awesome.
• 7:41
  SPEAKER_00: Well, um, as we uh just kind of dialogue here, I wanted to um the reason why I wanted you guys to share is that um both of you um are really actively involved, obviously in your children's lives.
• 7:56
  SPEAKER_00: You have three kids, but um in particular your oldest son, who is born with Down syndrome.
• 8:01
  SPEAKER_00: Um, you guys have been incredibly intentional as you've gone after research and advocating for him.
• 8:08
  SPEAKER_00: And we're gonna cover um a in just a little bit of what you guys do and you know, kind of give everyone a full idea and some great takeaways um from your guys' story.
• 8:19
  SPEAKER_00: But I just wanted to start with um the story of Winston being born, and he was your first and you know, much anticipated, but just from your guys' perspective, um share that process.
• 8:35
  SPEAKER_03: Yeah, so thank you.
• 8:36
  SPEAKER_03: Thanks for the opportunity to share, and uh maybe I'll start but pipe in anytime, Brandon.
• 8:43
  SPEAKER_03: Um so I had a very normal pregnancy, it was our first, and um enjoyed being pregnant, and um there were not any uh red flags during the pregnancy, and I did go into um my water broke a month early.
• 9:03
  SPEAKER_03: So I happened to be uh it's a little crazy story that I'll uh keep from all the details, but it was about two and a half hours from home.
• 9:12
  SPEAKER_03: Okay, I ended up driving back.
• 9:16
  SPEAKER_03: And after consulting with my physician, although he didn't tell me to drive back, uh, I knew the option was on the table and I took it.
• 9:24
  SPEAKER_03: Um and anyway, about uh 12 hours later, a little less, uh, we had this little baby boy, and I think I was in shock because I had not had my uh first shower yet.
• 9:40
  SPEAKER_03: Oh wow and that was four weeks.
• 9:42
  SPEAKER_03: Um I can tend to be a little bit of a procrastinator, so I didn't feel quite ready, but here we go.
• 9:49
  SPEAKER_03: And uh so I think I was in shock from just delivering.
• 9:52
  SPEAKER_03: Totally.
• 9:53
  SPEAKER_03: My gosh, I can't believe I'm here.
• 9:55
  SPEAKER_03: And and then I saw Brandon from across the room just staring at him, and you know, of course, I was hoping everything was okay, and so then they brought um Winston over to me, and I looked at him and he was very purple.
• 10:12
  SPEAKER_03: And uh I didn't know the I didn't know what babies look like after they're born, especially if the cord was wrapped around their neck, and I looked at him and I I looked at Brandon and I said, Is everything okay?
• 10:25
  SPEAKER_03: And one of the nurses from across the room heard and and uh said, Is ever is everything okay?
• 10:32
  SPEAKER_03: And I said, Well, I don't know.
• 10:33
  SPEAKER_03: That's kind of what I'm wondering.
• 10:34
  SPEAKER_03: And at the time, the only thing I knew to say, which I would never say this now, but that's all I knew to say was he looks a little downsy.
• 10:44
  SPEAKER_03: And um Brandon said, like something like I was thinking the same thing.
• 10:50
  SPEAKER_03: And so the nurse said, Well, would you like somebody from the NICU to come?
• 10:54
  SPEAKER_03: And so we ended up having a consultation, it was happening so fast.
• 10:58
  SPEAKER_03: Yeah, uh, and she did a clinical assessment and said, We'll have to do a chromosomal workup.
• 11:04
  SPEAKER_03: But from what I can tell clinically, it would appear that you know your son has Down syndrome.
• 11:11
  SPEAKER_03: And I don't really remember a ton after that.
• 11:14
  SPEAKER_03: I think I went into a little bit of a state of shock.
• 11:17
  SPEAKER_03: I was watching myself from above, I think, on the out-of-body experience.
• 11:21
  SPEAKER_03: But um, I do remember this.
• 11:24
  SPEAKER_03: I remember um holding Winston, not knowing what to think, being in complete shock that what all the things that I had in my head about what parenting would be like and what might be the road for a son and having a boy just seemed to evaporate.
• 11:44
  SPEAKER_03: I wasn't sure what to think.
• 11:45
  SPEAKER_03: And Brandon was at my side and I was holding Winston, I wasn't crying.
• 11:50
  SPEAKER_03: And um she said, I'll give you a few minutes before I send your family.
• 11:54
  SPEAKER_03: And I said, That'd be great.
• 11:55
  SPEAKER_03: She walked out, shut the door.
• 11:57
  SPEAKER_03: Brandon buried his head in my lap while I'm holding Winston, and after a moment, lifted his head up, looked me in the eye, and said, Tiffany, um, I'm gonna need to learn a lot more about God's love because I'm gonna need a lot of it to raise this little guy, to help raise this little guy.
• 12:18
  SPEAKER_03: And then he looked at me and said, Tiffany, we're a team and we're gonna make it.
• 12:23
  SPEAKER_03: Oh, wow.
• 12:23
  SPEAKER_03: And at that point, then I just I think that was for me, um, you know, I think I teared up and you know, that really bonded us, I think, from the beginning to know no matter what we face, somehow we're gonna make it one day at a time and we're gonna do it together.
• 12:39
  SPEAKER_03: And uh that was the really the start of our journey.
• 12:43
  SPEAKER_00: Wow, that's amazing.
• 12:44
  SPEAKER_00: That's beautiful.
• 12:45
  SPEAKER_00: And what I mean, Brandon, I I mean, you can't prepare to how you're going to respond in a situation like this, but that's a beautiful testimony to your marriage and just a testament to your heart and your desire to father.
• 13:00
  SPEAKER_00: I mean, really, no matter what situations we're faced with, that's what we are first to go to, is like we really need God's love to parent.
• 13:08
  SPEAKER_00: For sure.
• 13:09
  SPEAKER_03: Yeah, absolutely.
• 13:10
  SPEAKER_00: Uh wow, that's amazing.
• 13:12
  SPEAKER_03: So what did I need that love just individually, I think, to be able to um to I think to parent and then just to be able to help what's going on in the inside of us, right?
• 13:23
  SPEAKER_03: So totally that's that's been huge for us.
• 13:26
  SPEAKER_00: Yeah, I think those are one of those moments um of where it's a true test and you know, kind of the fire of what is in the inside of us and where a relationship is with the Lord and how you know any crisis that we face kind of is that refining fire of of kind of you know, kind of proof of what um we've put in so far.
• 13:46
  SPEAKER_00: So um yeah, I think I just but at the same time, so I think you've articulated so beautifully that any parent facing what feels like a crisis to them, you know, that statement of we're a team, you know, we're in this together and we're gonna go after this together.
• 14:04
  SPEAKER_00: So you guys certainly have.
• 14:06
  SPEAKER_00: I mean, there's so much that I've seen.
• 14:09
  SPEAKER_00: Um you guys do.
• 14:11
  SPEAKER_00: And now you've you've had two other kids, um, two girls, and what are all their ages again?
• 14:19
  SPEAKER_01: So so we have uh we have a six-year-old uh little girl, Graciella, who just finished um finished kindergarten.
• 14:26
  SPEAKER_01: She's going into first grade, and then we have uh almost four-year-old Eliana, okay, who is um the most uh unexpected and wonderful caboose and baby of the family that we could have ever expected.
• 14:41
  SPEAKER_01: She keeps us laughing and she's um a free spirit kind of by all definitions of the word term, and uh yeah, she's uh yeah, she's just been a refreshing addition, and it's it's wonderful to watch her and Graciella kind of be this little dynamic duo sister team, um uh as a team of sisters to be you know there to support and love Winston.
• 15:06
  SPEAKER_00: Um that's awesome.
• 15:08
  SPEAKER_01: Yeah, it's it's pretty been pretty neat watching them all three kind of gel together as a sibling unit.
• 15:16
  SPEAKER_03: So and Winston is eight, so he was our first, I think I mentioned.
• 15:19
  SPEAKER_03: So eight, six, and four.
• 15:21
  SPEAKER_00: Okay, it yeah.
• 15:22
  SPEAKER_00: So I I know like me, you have your hands full, and you probably hear that a lot, but it's true, isn't it?
• 15:28
  SPEAKER_02: It's true.
• 15:29
  SPEAKER_00: It's it's wonderfully we love it.
• 15:30
  SPEAKER_00: Yeah, totally.
• 15:32
  SPEAKER_00: I know Spencer keeps telling me we're gonna miss these days, and I know we will.
• 15:36
  SPEAKER_00: I already missed the little days, and now they're all you know going off to school.
• 15:40
  SPEAKER_00: I'm like, oh my goodness, when did it all happen?
• 15:42
  SPEAKER_02: So Yeah, yeah.
• 15:44
  SPEAKER_00: It's so fun.
• 15:45
  SPEAKER_00: Um now uh Winston, um, what have you just talk to me about some of your approaches?
• 15:52
  SPEAKER_00: I know you've pursued therapy and specialized education and so much more.
• 15:56
  SPEAKER_00: Would you share just some of your process of figuring out those decisions and maybe even helping to create some uh uh you know what was unavailable before resources and that sort of thing?
• 16:10
  SPEAKER_01: Yeah, so you know, I think that just when we started the journey with Winston, I think the first things that we did were just uh try to connect and identify with community um that shares uh that shares in that journey.
• 16:26
  SPEAKER_03: We didn't even know up front that we needed that though.
• 16:29
  SPEAKER_03: Well, no, we didn't say yeah.
• 16:31
  SPEAKER_03: We you know it took us about four months before we were invited to a Down syndrome walk.
• 16:38
  SPEAKER_03: Um it used to be called the Buddy Walks, now it's step up for Down syndrome.
• 16:42
  SPEAKER_03: And at that point in time, I would say neither one of us were interested.
• 16:48
  SPEAKER_03: Uh there was a lot of fear there.
• 16:50
  SPEAKER_03: We didn't know even what Down syndrome meant.
• 16:52
  SPEAKER_03: We were just trying to take care of this little baby with baby needs, you know, and we just kind of wanted to stay in that place.
• 16:58
  SPEAKER_01: But but then there was also I would say fear, but there was I was processing probably through some anger um about the situation, and I knew it wasn't healthy, I knew it wasn't right, but um we we just really on not on our own, but you know, volition.
• 17:17
  SPEAKER_01: Actually, I I credit Tiffany for this, but um she really helped us through some other connections get to our very first Down syndrome walk.
• 17:26
  SPEAKER_01: Okay, and I think we didn't know what we were looking for when we went to that, but we I think we wanted a picture of like you know, just show us like what Down syndrome can be optimistically and a happy picture of it, and you know, because we'd been through a lot of doctor visits and we've been through a lot of the you know, they read the textbooks on well, these are all the conditions you could likely face, and this is the progression of things you gotta deal with, and these are all the you know specialists that you need to go see.
• 17:54
  SPEAKER_01: And it was it was a sobering journey up to that point.
• 17:58
  SPEAKER_01: We just wanted to see something like encouraging, uplifting, and celebratory.
• 18:04
  SPEAKER_01: And we didn't know that that was what we were gonna get, but that's what we experienced when we went to our first walk, and then subsequently were invited to a parent group that we attended and supported us uh through those early days in the journey.
• 18:17
  SPEAKER_01: And I think that connecting as challenging as it was, and honestly, we didn't really know we needed to do it, and I would be the first to admit I didn't want to do it, but it had an immense impact on our the trajectory of our journey, and I think the the quickness at which we were able to get the support that we didn't even know we needed, and and a lot of other things we didn't even know we needed because there was a group of people that we could begin a journey with that we were all on that same journey with them, but they were further down the road, and that kind of helped us know like, hey, these are some of the signposts, these are some of the great things, these are some of the you know areas that you it helped us, and they may help you.
• 19:04
  SPEAKER_01: And um I think that was that was pivotal that that moment.
• 19:11
  SPEAKER_03: And that helped launch us into figuring out um like from a medical standpoint what therapies he needed, and we we did dive right in, and that's something we're really open about, is from the time he was about five months old, he had been in um speech therapy, occupational therapy, and for a period of years physical therapy, and twice a week it was a huge commitment, a financial and time commitment.
• 19:37
  SPEAKER_03: Our parents were involved and in helping us.
• 19:41
  SPEAKER_03: Um, and so we really got um it just everybody came together to do their part, and you know, we're pretty convinced that um it was a big sacrifice in a lot of ways, but one that was well worth it to take care of or to take advantage of what we were able to take advantage of from a therapy standpoint, and then from an educational standpoint, the school also came out once a week, and so we took advantage of that, but we felt like that wasn't probably enough and went down the medical therapy route as well.
• 20:11
  SPEAKER_00: Yeah, that I mean that's really huge, because right there, you know, Brandon, you start like for you guys to be willing to go there, that that takes kind of a step of admission, and it I mean, maybe some people would go, Well, I mean, of course you need help, but but that's you know, that's just kind of acknowledging the grief in your spirit um of like, oh yeah, this is this is reality, this is life, and you know, being willing to um identify it and then go and partner with others.
• 20:40
  SPEAKER_00: I mean that that would be huge.
• 20:42
  SPEAKER_00: But talk about some of the too, the I mean the financial, I can't imagine.
• 20:47
  SPEAKER_00: You know, is it you know harder for medical insurance?
• 20:50
  SPEAKER_00: You know, what are kind of the needs?
• 20:52
  SPEAKER_00: Is are there things that are available to every family facing um you know, a diagnosis of of Down syndrome um in their child?
• 20:59
  SPEAKER_00: How what does that look like?
• 21:02
  SPEAKER_01: I mean, w we we learned a lot in this in this process.
• 21:07
  SPEAKER_01: Um you know, there's there's a wide spectrum of what's available through traditional employer-provided medical insurance.
• 21:15
  SPEAKER_01: Um so I guess depending on individual situations, I would say you look into it.
• 21:20
  SPEAKER_01: There's always loopholes.
• 21:22
  SPEAKER_03: Um and never take no as an answer, right?
• 21:25
  SPEAKER_01: Yeah, the five, because you know, literally it was it was a five-year, I call it a battle.
• 21:30
  SPEAKER_01: It's probably more appropriately categorized as a struggle.
• 21:33
  SPEAKER_01: Okay because I think that insurance wants to support and help everybody.
• 21:39
  SPEAKER_01: I really do believe that.
• 21:41
  SPEAKER_01: Um I think that there's things though that they set up to avoid excessive use of certain things that may not be shown to be beneficial.
• 21:51
  SPEAKER_01: Now, with a situation where there's a clear diagnosis and a clear situation where you have a child like Winston that that maybe needed some.
• 22:00
  SPEAKER_01: Early intervention and additional support more than what's being provided by the school system.
• 22:05
  SPEAKER_01: Medical private therapy could really help fill that gap and take the support and early interventional steps that could radically transform like his overall just the curve at which he's able to learn to speak and talk and socialize, but then also move, you know, the gross motor and all the fine motor and all the things that we just take for granted that most babies just develop into naturally.
• 22:33
  SPEAKER_01: But therapy helped to accelerate that and probably maximize the moments that Winston was developing.
• 22:37
  SPEAKER_01: That having been said, I think that if people are listening and didn't have commercial insurance or good commercial insurance, there's wonderful programs through many of the state Medicaid programs called TEFRA that is also available to people that has wonderful coverage for a lot of the things that you may want to pursue, but um it's it's kind of a labyrinth to find all of this stuff.
• 23:04
  SPEAKER_01: But again, sort of the the the the hidden benefit of connecting to a community of people that are on that similar journey that are ahead of you, you're gonna learn little loopholes or quicker ways in, or you know, I like to metaphorically call it the bat phone.
• 23:19
  SPEAKER_01: You can you can figure out what the bat phone is where you can call and streamline the process to figuring out this information so that you can get your child or the support you want quicker with less um because all of these programs and processes are there in place and they're wonderful, but sometimes they're hard to just know where to start.
• 23:41
  SPEAKER_01: It can be overwhelming from the school system to medical to but um it's all there, but many times like the best benefit is just connect with people that are further ahead in the journey and they'll and they'll love to walk you through it because chances are if they've partaken in any of those um those support services, they'll want to give you know they'll want to give back to somebody that's maybe further down the road than than them or or or not or beginning the journey, right?
• 24:10
  SPEAKER_01: Um where they can kind of pay it back because they were paid, they paid it forward from somebody else.
• 24:14
  SPEAKER_03: So and I would say that that's true for um almost all special needs.
• 24:19
  SPEAKER_03: So it doesn't I think it's not you to Down syndrome for autism and for many other um needs, I would say it that is huge.
• 24:27
  SPEAKER_03: And we've been able to connect with parents of many different types of special needs.
• 24:31
  SPEAKER_03: I think the one thing that we all have in common is you feel an instant bond when you can relate to somebody who has been in a similar situation doesn't have to be the same situation, but I think the feelings that parents go through, no matter what the diagnosis is, can there are similarities that make things much more, you know, we share similar emotions and the grieving process and all of that more than there are differences, and that creates instant bonds.
• 24:59
  SPEAKER_03: And so I think being involved in the special needs community and with others proactively helps you find those resources because nobody's just saying, here's a menu, right, help yourself.
• 25:10
  SPEAKER_00: Yeah, no, that's huge.
• 25:12
  SPEAKER_00: The only thing I can liken it to for our experiences, and we've got um a couple kids who have some different things to navigate, and um, my youngest um desperately needed speech therapy.
• 25:22
  SPEAKER_00: And it was one of those things that I was in denial in for a long time because I was like, Oh, he's a third, he's got two older sisters, uh, he's fine.
• 25:29
  SPEAKER_00: He just, you know, and um he actually had a really critical problem, and it was totally the Lord who connected me with someone at um uh a parent partnership thing that the girls were a part of, and I was kind of sharing, you know, you know, our struggle, and she's like, Oh, it sounds just like my son, and this is what we did, and this is what we pursued, and she just laid out this plan that I would have never in a million years, and I have her to think because I mean we ended up doing um an ECC program for two years that it was a radical transformation, and there was also some diet, you know, changes along the way that were recommended and saw that bring about.
• 26:10
  SPEAKER_00: And so now we're navigating some new things with um with a reading um diagnosis that um you know he's gonna have to also navigate through.
• 26:19
  SPEAKER_00: But I feel so empowered from just like from all that time knowing that like I all I need to do is connect with people who have also experienced the same thing, and I know they can give me so many different tools and resources that other you know that otherwise I'd just be like, you know, researching on Google for hours.
• 26:36
  SPEAKER_00: Endless results, not knowing what really works.
• 26:38
  SPEAKER_03: Yeah, it's a very similar experience in that um, and I think the biggest thing that you just touched on is, you know, you did eventually push through your fear of maybe what it could mean or everything's fine and just blocking everything else out to the point where, you know, I think we get to a point where those of us that realize, okay, I want to do, I for me, I want to know down the road that we did absolutely everything we could to early as early as we knew to, um, because that might be different for people in different places.
• 27:17
  SPEAKER_03: But when you realize it and you do make progress, there's a satisfaction in knowing I have done everything that I know to do to give them the and him the best start possible.
• 27:29
  SPEAKER_03: Um, and then you know, we trust God all along the way.
• 27:32
  SPEAKER_03: He's, you know, makes the difference ultimately, but um, we do our part.
• 27:38
  SPEAKER_03: And I think that's that's our part.
• 27:40
  SPEAKER_03: And we when we see parents, you know, that struggle with stepping out and making that um and breaking through, you know, whether it's fear or whatever it is, uh, I think I just want to help push them forward and say you can do this.
• 27:55
  SPEAKER_03: And and you know, when we can break free from the things that are personally going on inside of us to do the things that are best for our kids, I think that's where then the Lord has opened doors to be able to just throw people across our paths and and be able to ultimately get on what they need.
• 28:13
  SPEAKER_00: That's amazing.
• 28:14
  SPEAKER_00: I would love to hear.
• 28:16
  SPEAKER_00: Um, I think somehow I'll have to link to the show notes um uh Winston's little chant.
• 28:22
  SPEAKER_00: Um, I think that you shared maybe was it the fall or was it the spring?
• 28:26
  SPEAKER_03: I'm kinda kind of it wasn't that well, it it got shared a couple different times because the I am somebody.
• 28:32
  SPEAKER_00: Yes.
• 28:33
  SPEAKER_03: Yes, yes.
• 28:34
  SPEAKER_03: Uh so yes, we're very proud of him.
• 28:37
  SPEAKER_03: So the end of his first grade year, um the school, the the public elementary school that Winston goes to, the I think it's the guidance counselor has this uh short saying that they can say in less than a minute.
• 28:54
  SPEAKER_03: It starts out with I am somebody.
• 28:55
  SPEAKER_03: And it's just very uh very affirming and confidence building and just self-esteem booster kind of I don't know.
• 29:05
  SPEAKER_01: Um it's it's it's a really positive daily affirmation that they say about themselves and what they're capable of.
• 29:14
  SPEAKER_03: Yeah, and so Winston had memorized it because they said it every day, and at the end of the school year, they asked if Winston would like to lead it, and so he held I think he held the microphone, I can't remember.
• 29:25
  SPEAKER_03: Yeah, and he said it in his class, repeated it, and he was very proud of himself, and so we were just but then um but then in the fall he had the opportunity they asked if it would be okay if um if they were to practice and he would maybe do it in front of the assembly at the all-school assembly.
• 29:48
  SPEAKER_03: And you know, of course, we were nervous, we don't want him to fail, and what would that mean if he couldn't get up and do it?
• 29:54
  SPEAKER_03: And um, because Winston is not the most social person, so he's a little uh maybe a little different than the stereotypical I don't know, thoughts that people have when they think of kids with Down syndrome or people, individuals with Down syndrome.
• 30:07
  SPEAKER_03: And so anyway, we said yes, let's let's give it a shot.
• 30:11
  SPEAKER_03: And uh just a few months back, he did stand up in front of his whole school um with his amazing um para.
• 30:21
  SPEAKER_03: And he recited with the microphone in hand, I am somebody, and the whole school reported and or repeated and cheered afterward.
• 30:30
  SPEAKER_03: And I think he was, we were told, like the youngest student to ever have that opportunity.
• 30:36
  SPEAKER_03: And so we thought that was it was really cool that we had.
• 30:42
  SPEAKER_00: I'll for sure have to link um that video in our show notes and share it because I thought I was so inspired, I was blessed by it, and I didn't even know the whole story.
• 30:49
  SPEAKER_00: I mean, it's huge, it's a big deal.
• 30:52
  SPEAKER_01: Yeah, we were inspired.
• 30:53
  SPEAKER_01: It was the highlight of his it was his it was the highlight of his whole second grade year.
• 30:57
  SPEAKER_00: That's awesome.
• 30:58
  SPEAKER_00: That's awesome.
• 30:59
  SPEAKER_00: Yeah.
• 31:00
  SPEAKER_00: Well, uh share maybe I would just love for some people to be encouraged because it does take that the risk, the acknowledgement, pushing through the fear to get help and to find community.
• 31:15
  SPEAKER_00: What are some of the things that you have seen specific to Winston that you feel like he's been able to excel in because um of your steps to that in comparison to maybe um where other kids might be at with Down syndrome at his age?
• 31:32
  SPEAKER_03: I don't know if we could really come compare.
• 31:35
  SPEAKER_01: I think it's hard to compare.
• 31:36
  SPEAKER_01: I think I think that I think we may have may have touched on a couple of these points earlier, but it just helped us get on a journey to some of the things that we knew we just needed to get in place as soon as we heard about them.
• 31:51
  SPEAKER_01: Um and so it's hard to compare, but I think it's um easy for us to look back and say, wow, had we not gone to the walk, we wouldn't have connected with the speech therapy team.
• 32:02
  SPEAKER_01: We probably wouldn't have connected with the parent group support team.
• 32:07
  SPEAKER_01: Um we may not have known as much as we did about some of the educational early intervention resources that we that we plugged into.
• 32:16
  SPEAKER_01: Um we wouldn't have found out about some of the special additional specialists that Winston had had gone and seen.
• 32:22
  SPEAKER_01: Um and then we probably just wouldn't have been as well informed as parents in terms of just general acumen or knowledge or just just uh just an overall awareness and understanding of Down syndrome, um, to then begin to kind of inform ourselves and then kind of begin to put things in place um to give Winston the best shot and honestly to give ourselves the best support.
• 32:51
  SPEAKER_01: Like we went to a we went to uh uh a parents-only conference that actually was um co-sponsored by the autism, um the autism chapter of Minnesota, as well as the Down Syndrome Association of Minnesota, and it was a combined collaborative effort on just you know helping make your marriage strong with um with having a child with special needs.
• 33:14
  SPEAKER_01: And um I think that all of those things just have given us a foundation to just provide the best environment that we can with the best support that we knew.
• 33:27
  SPEAKER_01: Um and we just you know, we just believe a lot of all of that, which honestly again isn't is is nothing more than we just we've been in the right place around the right people, learning and you know, gaining the right information.
• 33:41
  SPEAKER_01: We don't we haven't gained all of it, we haven't perfected all of it, and we've probably certainly not implemented it all perfectly.
• 33:50
  SPEAKER_01: I don't think that's any of the point, but we've done the best we could, and I would say others probably just doing the best you can with whatever knowledge and information and community that you can intentionally seek out, develop, and foster will set you and your child up for the best success, whatever that success metric means.
• 34:11
  SPEAKER_01: Because I think that's often the challenging word is yeah, well, how do you define success?
• 34:16
  SPEAKER_01: Um, for us, you know, the the crowning moment of Winston's second grade year wasn't his scorecard, it wasn't his report card, it wasn't some science project that he was able to do at a second grade level.
• 34:30
  SPEAKER_01: Um, it was the fact that he was able to go from being the shy kid that wanted to do nothing more than crawl in a corner with a book in kindergarten to a little guy that stood in front of 500 uh plus people in his elementary school in the gym that is actually a place he doesn't like to go because it's so noisy with a mascot that he's scared of.
• 34:55
  SPEAKER_01: And being able to stand and deliver a memorized poem that is an affirmation for like that's just but but that's you know, it's a it's again, it's it's nothing of it's just a culmination of a lot of things that have just worked that we would define as well the that those are the special moments, those are the highlight, real moments that that God has orchestrated, and we've just been able to be you know stewards of Winston's progress progression, of the advocacy that we can provide him, of the support we can create for ourselves and and our family and all of our extended family.
• 35:37
  SPEAKER_01: Um but ultimately we just done the best we knew to do.
• 35:41
  SPEAKER_02: Yeah.
• 35:42
  SPEAKER_01: And you know, and then we get to enjoy moments like that.
• 35:46
  SPEAKER_02: Yeah.
• 35:46
  SPEAKER_01: Just as we enjoyed the moments when he first walked, even though that came, you know, 12 years, 12 to 18 months later than than some kids, you know, that walk at you know, 12 months or less.
• 35:57
  SPEAKER_01: Like but we celebrated those first steps and they meant a lot of the other things, like Winston standing in front of his second grade, you know, second grade class in the school assembly.
• 36:09
  SPEAKER_01: It was all this culmination of things that um that came together.
• 36:14
  SPEAKER_01: We just uh we're just grateful that we were able to just do the best we knew to do with what we had been given at each moment in the in the time frame and our life with Winston.
• 36:25
  SPEAKER_01: So I don't know if that captures.
• 36:27
  SPEAKER_00: Yeah, I think that's a powerful message for everyone because what you said is true.
• 36:31
  SPEAKER_00: There's no way to compare not only, I mean, at any age, um, it's all about our personal success with exactly where we're supposed to be and who we're supposed to be in the eyes of the Lord and you know, confident of that within ourselves and with, you know, as parents to you know, be able to celebrate who they are and the accomplishments that are important to them, not even compared to their other siblings or you know, certainly not their grade level or class or friends and and things like that.
• 37:02
  SPEAKER_00: So no, I think that's beautiful, it's awesome.
• 37:05
  SPEAKER_00: And I think um I think it's really great that um so many were able to celebrate that big moment last year for him.
• 37:12
  SPEAKER_00: I mean that's just that's phenomenal for sure.
• 37:15
  SPEAKER_00: I think for even, you know, most kids to get up there in front of five hundred people, that's huge.
• 37:22
  SPEAKER_03: Great for most of us adults, yes, that's challenging.
• 37:25
  SPEAKER_00: Exactly, exactly.
• 37:27
  SPEAKER_00: Well, I'd love to hear some more about because you talked about that you originally um got involved with the community and walks, but you have since then, I'm trying to remember how long ago, maybe three years ago, started Walk for Winston.
• 37:40
  SPEAKER_00: Uh tell me a little bit about how that unfolded.
• 37:45
  SPEAKER_03: So really it just came from so walking with Winston is a part of the Step Up for Down syndrome walking um Down Syndrome Association in Minnesota.
• 37:56
  SPEAKER_03: And after when we went the first time, and Winston was just four months old, he was just a baby, and we were overwhelmed by just sitting there on the grass on a blanket, not knowing anybody and looking around and seeing these, you know, um, it was everything we didn't know about Down syndrome that there are young families that have kids with Down syndrome, and we saw the kids running around playing football with their families, and then we could tell the extended family and friends were there to support them, and we were blown away by that by all of the community there, and uh, and so you know, then we realized like we really do need to, we're gonna need, and some people told us you're gonna need your family uh and your friends to rally around you, and you're gonna need that support.
• 38:54
  SPEAKER_03: And we didn't know what that meant back then, but so the next year we asked a few people to go with us and we went to the walk and kind of added a few more people, and then after that, we were like, we want, we should do t-shirts, and we should, you know, we saw a lot of that tense and and really, and then we realized this is all about celebrating the lives of these individuals that haven't always been celebrated you know, um over many, many decades, and uh, and they have value and intrinsic value and God-given potential and god-given purposes for their lives, just like we do when we don't have a diagnosis.
• 39:37
  SPEAKER_03: Um, and so, you know, we it it's about, I mean, you tell me more because he is he is now this year the president of the executive board of the Altsy.
• 39:48
  SPEAKER_03: It's amazing.
• 39:50
  SPEAKER_03: Um uh, but I would say it's about bringing awareness to these amazing and awesome kids and letting people know that we're more our kids are more like yours than they are different.
• 40:06
  SPEAKER_03: Yeah, and helping to bring others into the community helps not only support us, uh I mean the emotional support that we get by people's financial donations and the all the donations in Minnesota go right to supporting the families.
• 40:20
  SPEAKER_03: So there are a lot of ways that research is done, but the Down Sendham Association, their main strength is to support the families and for us in the journey, and then bringing others into that journey with us, it helps open their eyes to their kids, and we love it when families bring all of their kids because now they're exposed to kids that are different, but then they realize they're actually more alike and they've got a lot of things in common, and um and to be able to really focus on that and focus on their milestones and let the community know we're celebrating this, we're not hiding our kids, um, and we want everybody to know and be part.
• 40:58
  SPEAKER_03: I just think um, you know, I was just telling someone this morning that the fact that all, you know, many times, not all kids, but many times kids with Down syndrome and other um special needs get to be in the same classroom with everybody else's kids um and then get you know some special support that they individually need versus it back in the day when they used to be in a room down the hall, nobody ever saw them because the you know the folks that will probably employ Winston and hire him are probably sitting in his classroom.
• 41:32
  SPEAKER_03: Um, and we want them to know Winston and be really comfortable with him.
• 41:36
  SPEAKER_03: And I think that's I think that's pretty awesome.
• 41:39
  SPEAKER_00: That is that's huge.
• 41:40
  SPEAKER_00: I th I think that is really great.
• 41:42
  SPEAKER_00: So, Brandon, that now you get to share.
• 41:44
  SPEAKER_00: Your wife kind of segued well, but you're president of of this board of directors for the Down Syndrome Association in Minnesota.
• 41:52
  SPEAKER_00: Uh share a little bit about what the organization does and then just what your role is there.
• 41:56
  SPEAKER_01: Yeah, no, so um, yeah, so it's it's been a great um it's been a great opportunity.
• 42:02
  SPEAKER_01: I'm I'm thrilled to be the president of the board.
• 42:05
  SPEAKER_01: Um, you know, really all that I do is is lead a board of directors that um you know really tries to intentionally align with the staff and the community to create a strategy around how can we maximize the efforts of the organization to uh fulfill the mission of the Down Syndrome Association, which is really simple.
• 42:24
  SPEAKER_01: It's got three main points and three main points that we've personally experienced, and it's probably why we're so passionate about the mission, is because we've personally experienced what that is.
• 42:35
  SPEAKER_01: And it's it's simply built on the Down Syndrome Association's mission is to create community.
• 42:41
  SPEAKER_01: And we've been a benefactor of that uh through the parent groups, but we create community across the spectrum, sibling groups, grandparent groups, um, parent groups, and then they're and then we have a special group for self-advocates.
• 42:56
  SPEAKER_01: Those are adults with Down syndrome that become their own advocate, and that's why they're called a self-advocate.
• 43:02
  SPEAKER_01: And we really try to support creating community for them, cooking classes, uh, other events.
• 43:08
  SPEAKER_01: Um so we create community.
• 43:10
  SPEAKER_01: We um we we we support and really look to empower individuals and families largely through education.
• 43:18
  SPEAKER_01: We do uh a large regional conference every other year, and then we have a variety of educational offerings that we support through webinars and through other virtual education as well as special symposiums, and we're really also working to try to begin to transform the education system in terms of individuals with Down syndrome.
• 43:41
  SPEAKER_01: Um they learn they learn in different ways and they have inherent strengths, one of which is they have very large capacities for visual memory.
• 43:50
  SPEAKER_01: And so, how can you teach reading and other educational concepts that can tap into their area strength?
• 43:55
  SPEAKER_01: So we're we're really looking to kind of support those efforts as well, and then the last.
• 44:00
  SPEAKER_01: So we create community, we empower individuals and families, and then we celebrate the abilities of people with Down syndrome.
• 44:06
  SPEAKER_01: That's really what the walk is about.
• 44:08
  SPEAKER_01: The walk is our Super Bowl Sunday.
• 44:10
  SPEAKER_00: Oh, that's right.
• 44:13
  SPEAKER_01: As Tiffany described, it's the culmination of a year of events, and it's also in a moment in time where we can say, wow, look at look at our community, look at these beautiful, you know, kids and adults, and all that they're able to do.
• 44:28
  SPEAKER_01: And let's just take a moment once a year to invite extended family, friends, relatives, coworkers to just come and celebrate with us or submit a donation online through our teams or just to the organization to say, you know what, I think it's beautiful what you guys are doing to create community, empowering families, and then celebrating.
• 44:47
  SPEAKER_01: I want to stand behind that and support it.
• 44:49
  SPEAKER_01: That's that's ultimately what the the walk is is about.
• 44:52
  SPEAKER_01: It's a public awareness uh campaign to just get people that may have never interacted or been up close to somebody with Down syndrome.
• 45:00
  SPEAKER_01: It's that, but it's also a moment in time where families can just come together and say, gosh, we're here, we love you, and we want to walk and just show our support in a solid area in a very amazing way.
• 45:13
  SPEAKER_01: And so um so it what we do as an organization is very special.
• 45:19
  SPEAKER_01: I've worked for this my fourth year.
• 45:21
  SPEAKER_01: Um and I uh I I'm just privileged to be a part of this wonderful team that's kind of working to create what we're developing and continue to make it better.
• 45:33
  SPEAKER_01: And um, you know, for the end user, for the end family, and for the end individual, so that their life is elevated, the quality of their life is elevated through the various ways we're able to do that.
• 45:43
  SPEAKER_01: Um, but it takes a team, and we're one organization along with several other wonderful organizations in the state that I would just give a shout out to.
• 45:52
  SPEAKER_01: Special Olympics of Minnesota is an exceptional program.
• 45:57
  SPEAKER_01: Uh Chi Chi's Playhouse is on an additional wonderful program um in the state of Minnesota.
• 46:03
  SPEAKER_01: We all do different jacks baskets.
• 46:06
  SPEAKER_01: Um yeah, I'm there's there's so many we could name, but uh yeah, this isn't this isn't this isn't a complete and list.
• 46:13
  SPEAKER_01: Maybe you can add them into the show notes, but um there's a lot of other people that it takes.
• 46:19
  SPEAKER_01: It takes a village to raise a child.
• 46:21
  SPEAKER_01: I think it takes a community to support, especially support individuals and families with with a particular disability.
• 46:28
  SPEAKER_01: And I think that um that the work all of these organizations is doing is making a difference and it's truly impacting lives.
• 46:36
  SPEAKER_01: And so we're just privileged to be a part of that.
• 46:38
  SPEAKER_03: And PACER.
• 46:39
  SPEAKER_03: PACER is huge.
• 46:40
  SPEAKER_03: Oh, and PACE, yeah.
• 46:40
  SPEAKER_03: PACER is a big nonprofit organization that everybody's really looking to do the same thing, but everyone has kind of their niche.
• 46:46
  SPEAKER_03: Okay.
• 46:47
  SPEAKER_03: And so to be able to know what resources are there when you need them and to know we have them is is huge.
• 46:53
  SPEAKER_03: And then I'm gonna just give a shout out to Brandon because um I think to for men to step up to the place um as dads and be a part of the journey.
• 47:06
  SPEAKER_03: Um I'm a mom, I work full-time, I've got three kids.
• 47:11
  SPEAKER_03: We love our crazy life.
• 47:13
  SPEAKER_03: Um, but I couldn't do this on my own and to know that I have a supportive husband who is um equally, if not more, invested in different ways.
• 47:24
  SPEAKER_03: We're just invested in different ways to be able to support Winston and our family.
• 47:30
  SPEAKER_03: And we know that by supporting Winston in every possible way, that that in and of itself will benefit his sisters.
• 47:38
  SPEAKER_03: So we look at it like we've made sacrifices for you know, for Winston and as a family that down the road will benefit Winston, but it's also gonna benefit the girls.
• 47:49
  SPEAKER_03: We we believe that wholeheartedly.
• 47:51
  SPEAKER_03: And so we think we're stronger as a family unit, you know, because of those investments.
• 47:58
  SPEAKER_03: And I'm very proud of that I have uh such a supportive teammate.
• 48:01
  SPEAKER_00: Yeah, I think you guys make an amazing team.
• 48:04
  SPEAKER_00: I I love it.
• 48:04
  SPEAKER_00: I think it's so inspiring and encouraging, and I think so many people can just learn from watching you guys for sure.
• 48:12
  SPEAKER_00: Um you touched on it really briefly, but I would love um, I mean, all the families I know who, you know, have a child with Down syndrome, um, you know, they have a lot of kids.
• 48:23
  SPEAKER_00: And so as anyone dealing with a child who has special needs and you it needs more time, individualized attention, what does that look like to kind of juggle and how do you navigate some of that?
• 48:35
  SPEAKER_00: And I realize you're not done yet, you're in the middle of it, you're in the thick of it.
• 48:39
  SPEAKER_00: Um how do you guys process through some of those and you know what do those conversations look like with your girls?
• 48:47
  SPEAKER_03: So it's a journey for sure.
• 48:50
  SPEAKER_01: I would say we're really still in the beginning, the beginning of that journey.
• 48:54
  SPEAKER_01: Um you know, I think our girls, particularly our middle daughter, Graciela, um, noticed, I would honestly say several years ago, the difference between her and her brother.
• 49:05
  SPEAKER_01: Um and I think that we've been intentional not to uh just do too much to talk about Down syndrome, but just to help her as she starts to understand and recognize the differences in ability, um, is to help her understand that those differences are are okay.
• 49:28
  SPEAKER_01: They're nothing to um make fun of, they're nothing to uh single out, but they're also a wonderful chance to say, you know what, there's a lot of things that you do really well that your brother may not be able to do very well.
• 49:43
  SPEAKER_01: There's a lot of things that he does very well, and so there's there's some of that that that beginning of this narrative that I think that we look to just celebrate each individual's ability for them and not in a comparative sense of well, they can't do what you can do, so you're better and they're worse.
• 50:04
  SPEAKER_01: But wow, that's just neat that Winston loves animals and literally knows thousands of very specific species and variations of animal.
• 50:19
  SPEAKER_01: And it's probably a skill, I think.
• 50:21
  SPEAKER_01: On my god my our daughter's best day, they may never be able to tap into that.
• 50:25
  SPEAKER_01: But we don't we don't celebrate, we don't we don't look at it and say, Wow, you you'll probably never be able to do that.
• 50:30
  SPEAKER_01: We just say, gosh, that's awesome that he can do that, isn't that neat?
• 50:33
  SPEAKER_01: And that's just one simple example.
• 50:35
  SPEAKER_01: But I think it's helping her to just um as she begins to process to just be an advocate for her brother, yeah, to uh to you know not not not not vigilantly or kind of militaristically like defend him, but more protectively just guard.
• 50:56
  SPEAKER_00: Sure.
• 50:56
  SPEAKER_01: Um guard what's special about him, but but then also some of the differences um to just know that they're there, yeah, and they're not something that we're gonna laugh at or look at or he keeps telling me I gotta keep looking into the camera.
• 51:14
  SPEAKER_00: Oh no, you're good, you're good, you're fine.
• 51:16
  SPEAKER_01: Um, but but to just begin to try to you know help her see like um the best of him so that she can begin to see the best of her and so that she can begin to recognize the best in other people, and then also she can help help others learn that skill too.
• 51:33
  SPEAKER_01: Um, because I think I don't know, and I'm uh I'll get off my soapbox in a second, but I think so much of this world we get uh we get on on our soapbox about I want to be noticed and and um I want to kind of single myself out, I want to create this unique audience about me, and and I I think I think a lot of that's good, and and and there's a lot that's that's well-meaning and well-intentioned, but I think that the ability to celebrate what's wonderful in other people is probably one of the greatest things that I think we all could continue to learn and embrace even more.
• 52:12
  SPEAKER_01: Um the self-celebration is one thing, but I think celebrating the celebrating what's good in others and saying, gosh, that's a strength of yours.
• 52:23
  SPEAKER_01: I want to just see you continue to get better, that's gonna make me better.
• 52:27
  SPEAKER_01: I was just listening to this this whole mindset, there's this growth mindset expert out of Stanford, I can't remember her name, but I think the more that we empower our children, especially, but I think people in general, to look at gosh, if I support everybody getting better, we're all gonna get better, and I'm gonna get better in the process.
• 52:49
  SPEAKER_01: And their advancement and their success is not an indictment on what I haven't achieved, but it's yet it's something that's pulling us all higher.
• 52:59
  SPEAKER_01: And I want to look to help to support how I can be better so that I can pull somebody else higher, and that we all can all kind of add to each other in a growth and a development way.
• 53:11
  SPEAKER_01: I'm getting a lot of cues here.
• 53:13
  SPEAKER_00: No, you're fine.
• 53:14
  SPEAKER_03: No, I no, she's touching my leg when it's my loves to use his hands, but I know his hands aren't really in the she's micromanaging my uh my visuals.
• 53:25
  SPEAKER_01: But but I'll I'll I'll end there to just say that I think that um that a lot of these principles we're trying to convey to our girls um in simple six-year-old and four-year-old, and before that, you know, five-year-old and three-year-old, terms so that they can just begin to get the essence, just the the small little essence that may make sense to them in the moment.
• 53:53
  SPEAKER_01: Um to just have those moments with them because that's ultimately what's gonna make the difference, is is a whole bunch of little moments versus sitting down and having this long drawn-out talk like once you know, once in a four or five year period.
• 54:07
  SPEAKER_03: Which we haven't done.
• 54:08
  SPEAKER_01: We haven't done, and we've been intentional probably not to do that.
• 54:11
  SPEAKER_03: Yeah.
• 54:11
  SPEAKER_03: Yeah, and I think it just hasn't uh it hasn't come up.
• 54:14
  SPEAKER_03: And if that comes up, it'll be very natural.
• 54:16
  SPEAKER_03: We haven't sat our girls down and said Winston has a diagnosis called Down syndrome.
• 54:20
  SPEAKER_03: It just Winston is a part of the family, yeah.
• 54:23
  SPEAKER_03: And at some point, when they get able to, you know, cognitively understand what those differences might be.
• 54:31
  SPEAKER_03: And now I'm using my hand and he's like, guys, are good.
• 54:34
  SPEAKER_00: No, it's totally fine.
• 54:35
  SPEAKER_03: Um but uh anyway, I you know, I hopefully we're modeling on our best day what inclusion looks like, right?
• 54:46
  SPEAKER_03: But I will say we have lots of bad days, and there are lots of days we're not modeled parents, so let's not kid ourselves.
• 54:55
  SPEAKER_03: We are have uh not receiv uh achieved any kind of perfection at all.
• 55:00
  SPEAKER_03: And so I'm sure our girls will tell us down the road that we did some things terribly wrong.
• 55:06
  SPEAKER_03: Um but we're doing the best that we know to do, and um you know, I don't know.
• 55:12
  SPEAKER_03: That's all I feel like yeah, you know, I think that's lots of nights that I think I go to bed and I realize I blew up and you know, being patient for Winston, because you need a lot, a lot of patience just didn't happen that day, and everybody saw my worst day.
• 55:30
  SPEAKER_03: And so um, but I think knowing if this is we're just taking this one day at a time, we're gonna screw up, we're not gonna do everything right, and then you know, just in the next day to try to, you know, do it get back to a place where we're gonna try this all over again.
• 55:46
  SPEAKER_01: Yeah, and I think we own it when we make mistakes too, where we do the best we can to own our mistakes, especially as they may relate to us and how we relate to Winston.
• 55:55
  SPEAKER_01: Yeah, especially in front of the girls.
• 55:57
  SPEAKER_03: Sure.
• 55:57
  SPEAKER_03: Uh apologizing.
• 55:59
  SPEAKER_01: Apologizing, you know.
• 56:00
  SPEAKER_01: I've you know, I've been guilty of just probably getting frustrated and more intense than I should with him at moments, and and I can I too.
• 56:09
  SPEAKER_01: And I can't well, yeah, we both.
• 56:10
  SPEAKER_01: I'm just speaking about I catch myself or try to catch myself, and then I try to be intentional to do that publicly where I apologize to him, even though he may not fully understand what I'm doing, but I'm trying to to do it as publicly as I can so the girls begin to learn some of that ownership of wrong behavior that we're all gonna do.
• 56:31
  SPEAKER_01: Um but then you know, working to try to make it right as best you can.
• 56:37
  SPEAKER_01: Um and and communicating that that that that you're aware of that now because you did that and you're gonna work to be better um in that area.
• 56:47
  SPEAKER_00: So I think this narrative is applicable to everybody.
• 56:51
  SPEAKER_00: I mean, you know, we all have um, well, maybe not everyone, but I certainly have that kid or two who uses all and depletes the patients a little bit quicker and requires a little bit more attention.
• 57:05
  SPEAKER_00: And um yeah, and it's easy to sh you know, shortchange others in the process and you know, um, but I think I think you kind of hit the nail on the head when you said, but you apologize and you seek ways to make it right and you example grace of being able to start over again and you communicate along the way.
• 57:22
  SPEAKER_00: And I I think also you're just um you talk about being l in little moments, um, the little moments that you the teachable moments that you take with your girls, with your kids to just instill that value in others.
• 57:36
  SPEAKER_00: I uh you know, everyone needs to be doing that um because we're all gonna interact um in a community where there are others who have different strengths and different weaknesses.
• 57:46
  SPEAKER_00: And how do we respond to that?
• 57:48
  SPEAKER_00: How would we respond to that well and right and in a way that brings life to others?
• 57:54
  SPEAKER_03: Um and making sure that you give yourself grace, I mean, lots and lots of grace, and then give those that are close to you, your family and friends, lots of grace as well.
• 58:07
  SPEAKER_03: Because, you know, as much as we don't know about this journey and never knew anything about Down syndrome, I think I was the only person in the world that never knew somebody, had a neighbor, had a family member, you know, my brothers, aunts, cousins, friends, whatever.
• 58:23
  SPEAKER_03: I didn't know anybody with Down syndrome.
• 58:24
  SPEAKER_03: So as much as this journey we were just learning as we go, so are friends and family, and even more so because they don't live with you day in, day out.
• 58:33
  SPEAKER_03: They see usually the highlights, right?
• 58:36
  SPEAKER_03: It's the on Facebook, the Instagram, most of the time we're putting the highlights, and the whole rest of the day could be full of, you know, one minute we're taking a picture and everything's great, and that's the highlight of the day.
• 58:45
  SPEAKER_03: The rest of the day was a complete disaster, and nobody knows what it took to get us through a meal or to get Winston to go to the bathroom.
• 58:55
  SPEAKER_03: Um, or you know, those things that can be hard.
• 58:58
  SPEAKER_03: So, as great um and as positive as things are, there are definite challenges.
• 59:04
  SPEAKER_03: And um, and I think giving yourself and others around you that aren't gonna understand that as close as some of our family members are to us, they don't live with us day in, day out and see those.
• 59:14
  SPEAKER_03: And so they tend to see a lot of the highlight reels as well.
• 59:16
  SPEAKER_03: And so giving them grace when they don't know what to say, they say the wrong thing.
• 59:21
  SPEAKER_03: Um, but I think what's most value, what means the most to us is when people want to engage.
• 59:27
  SPEAKER_03: They ask questions.
• 59:28
  SPEAKER_03: We love to share, and sometimes we just need to talk and we just need to let it all out.
• 59:33
  SPEAKER_03: I don't even care that you're not gonna really understand the fact that you care and we're having a conversation about it, and you just let me share and get my emotions out and cry or whatever I need to do, um, then we're all then we're all good and that that is that's true connection for for me.
• 59:49
  SPEAKER_00: That's awesome.
• 59:50
  SPEAKER_00: I think that's so great.
• 59:51
  SPEAKER_00: I think you just kind of gave to how can we um, you know, as we share community with others, support those in need.
• 1:00:00
  SPEAKER_00: And um I think too the just that you know, just you being willing to share can help others identify in their crisis, you know, that element of like, you know, it's not always perfect and you know, you do see the highlight reels and there are there is hope.
• 1:00:18
  SPEAKER_00: Um I recently read a book um that really ministered to me and th the the biggest thing, it wasn't like they could give me a diagnosis or they can um know exactly what it was that I was facing with my own kids, but it it just gave me that glimpse of of hope of you know, this is what normal is, which is it's really hard.
• 1:00:37
  SPEAKER_00: And you're gonna get those bright spots and those bright moments that'll take you through, but you know, the reality is giving yourself grace every day and and the do-overs and the forgiveness and um ask for forgiveness um and that whole process and then um finding those people that will just hear your heart and who maybe can't know exactly what you're going through, but who can encourage you to look at that.
• 1:00:59
  SPEAKER_00: Yeah.
• 1:01:00
  SPEAKER_03: Absolutely, yeah.
• 1:01:01
  SPEAKER_03: Because I just think um, and I think as you know, if somebody um has a family or friend and they're a family or friend of somebody with a special need, and they don't really understand it, that's okay.
• 1:01:14
  SPEAKER_03: You don't have to understand it.
• 1:01:16
  SPEAKER_03: Um, I think most people what they need is um they just want you to again ask some questions, uh ask how they're doing, and um, and if there's a question that you have about a behavior or um about something medical or school related or why do they do that?
• 1:01:38
  SPEAKER_03: I mean, I think there's ways that you can gracefully open up the conversation um and um, you know, without being critical of their parenting or anything like that.
• 1:01:49
  SPEAKER_03: But I think that usually, and I would say as a parent with a child with special needs, we need to be very um open to people asking questions and not be defensive about the question or assume we know why they're asking that question or assume that they're meaning something by their question beyond what they just said, and just helping them, you know, bring them into your world.
• 1:02:13
  SPEAKER_03: I think the more we can help bring people into our world, we shouldn't expect people to know our world, right?
• 1:02:18
  SPEAKER_03: Yeah or understand it, and that's okay.
• 1:02:20
  SPEAKER_03: But um, I think having having those conversations can be incredibly encouraging, meaningful, and um and does challenge us though at times to think through our situation.
• 1:02:32
  SPEAKER_03: And I think the grieving process continues.
• 1:02:35
  SPEAKER_03: Um, you know, you you experience that grief, that anger, you go through that at the beginning, just like you go through the grieving process for any real hardship in life, but you'll continue to hit those moments as they as your child gets older.
• 1:02:49
  SPEAKER_03: Um, but I think allowing yourself to just be there, be in the moment as you reference, um, and and have it and letting others in your world, I think is huge.
• 1:02:59
  SPEAKER_00: That's amazing.
• 1:03:00
  SPEAKER_00: Well, guys, I I just so appreciate I just saw the time and was like, oh my gosh.
• 1:03:06
  SPEAKER_00: Thank you.
• 1:03:08
  SPEAKER_00: Thank you.
• 1:03:09
  SPEAKER_00: This was so wonderful.
• 1:03:11
  SPEAKER_00: I I just I know that people will be encouraged and blessed through your story, um, through your willingness to share and be honest and transparent.
• 1:03:20
  SPEAKER_00: And um and for sure, um, I I just yeah, I just love what you guys are doing and um just applaud you because you you both have a lot going on in your world and and yet you take the time and I know that um all of your kids will thank you for it um because what you're doing is really special and um I'm so impressed.
• 1:03:43
  SPEAKER_00: So thank you.
• 1:03:43
  SPEAKER_00: Thank you for taking the time to share.
• 1:03:46
  SPEAKER_03: Thank you for allowing us to share our story.
• 1:03:49
  SPEAKER_01: Yeah, we we we feel you know we feel an indebtedness to everybody that's gone before us, um, you know, and and I think that an appreciation an appreciation of our forerunners is to give that same gift back um to those that are following behind you.
• 1:04:10
  SPEAKER_01: And so in some small way, like this is our this is kind of our paying it back for the next generation that's coming up because I mean we're celebrating 20 years of this down syndrome walk.
• 1:04:24
  SPEAKER_00: Wow.
• 1:04:24
  SPEAKER_01: This is gonna be our 20th year, and I think, gosh, 20, like let's roll back to the the the the clock, 20 years, or or whatever the scenario is, whatever your disability, whatever your community, somebody went before you.
• 1:04:37
  SPEAKER_01: So, how can you embrace and give back in some of those small ways to either support or create or develop um intentional communities that can create that for somebody else 20 years from now um to help us all make it a better place?
• 1:04:54
  SPEAKER_01: So thank you.
• 1:04:55
  SPEAKER_01: We're grateful for this opportunity and thank you for thank you for letting us have this platform.
• 1:05:00
  SPEAKER_00: Absolutely, absolutely, and any time.
• 1:05:02
  SPEAKER_00: And for sure, I hope that one of our visits soon in Minnesota will actually catch you in person again and be time to get to hang out.
• 1:05:09
  SPEAKER_00: Preferably at the lake house.
• 1:05:11
  SPEAKER_00: Yeah, there we go.
• 1:05:12
  SPEAKER_00: Lots of fun to be had.
• 1:05:14
  SPEAKER_00: Well, thanks you guys so much.
• 1:05:16
  SPEAKER_00: I appreciate it.
• 1:05:17
  SPEAKER_03: Thank you.
• 1:05:18
  SPEAKER_00: Have a great rest of the day.
• 1:05:26
  SPEAKER_00: Well, friends, I hope you enjoyed that conversation as much as I did.
• 1:05:30
  SPEAKER_00: I actually really enjoyed the live conversation with them, but I maybe even more so besides tuning out my annoying voice, you know, because when you hear your own voice, it just doesn't sound quite like you think it's going to.
• 1:05:45
  SPEAKER_00: But I enjoyed replaying that conversation and listening to their words of wisdom and their insight and their encouragement as well.
• 1:05:54
  SPEAKER_00: I hope that if you were moved by our conversation, that you might check out their fundraising link in our show notes for Walk in with Winston.
• 1:06:02
  SPEAKER_00: Every little bit helps them get closer to their goal and will really reach and impact so many people through that great um community and the organization that they were sharing about.
• 1:06:14
  SPEAKER_00: And they mention a lot of different organizations, particular to Minnesota, but we'll put them in the show notes in hopes that um if they would be a helpful resource, they might help you find something that's closer to your area or um for someone that you know who could uh use some of these resources and help and encouragement and community as well.
• 1:06:34
  SPEAKER_00: One of the books we talked about was Different, and I've kind of um I think alluded to it.
• 1:06:40
  SPEAKER_00: I don't remember if I shared the title, but it was the book Different, written by Sally Clarkson, co-authored with her son Nathan Clarkson.
• 1:06:49
  SPEAKER_00: I found it incredibly encouraging as I'm we're just navigating our own unique circumstances with our kids.
• 1:06:55
  SPEAKER_00: I loved her honest, um, vulnerable, um, and insightful journey of her parenting kids who had some different diagnoses, uh, especially as they they grew into their adolescent years and became um more problematic and a larger obstacle to overcome.
• 1:07:16
  SPEAKER_00: I think you'll be really encouraged by her book and her perspective in um raising kids who have some unique needs and how she continued to aspire to an ideal that she wanted to hold to all along, even with the obstacles that she might face and the things that the elements that might uh thwart it, that she still led her family so beautifully and so well and has four incredible kids, um because of her dedication and her faithfulness.
• 1:07:49
  SPEAKER_00: And because we've talked about wanting to share a few of the books that we're reading and podcasts that we're listening to.
• 1:07:55
  SPEAKER_00: I also wanted to recommend a new book that I'm reading.
• 1:07:58
  SPEAKER_00: Actually, it's not new, but new to me, called Fresh Out of Amazing, written by Stacy Thacker.
• 1:08:05
  SPEAKER_00: She will be on her podcast next month, and I'm excited to speak to her about the mini books that she's written, and she's raising four beautiful girls and has a lot to share of encouragement for us and a little bit more to share about the books that she has written and uh her new one as well.
• 1:08:23
  SPEAKER_00: So, in the meantime, I hope you'll check out Fresh Out of Amazing, written by Stacey Thacker.
• 1:08:29
  SPEAKER_00: Again, all the details will be in the show notes.
• 1:08:32
  SPEAKER_00: In the meantime, I hope you find more ways to live simply wholehearted, unplugged, purposeful, and intentional.