Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
And I’m Lori Saux.
0:34
Today we’re joined by Brady Murray of RODS Heroes.
0:38
We first encountered Brady’s story, watching an incredible video on social media of his son Cooper, throwing out the first pitch of a Boston Red Sox game. And this is the gift of social media, that, that we’re able to tell our stories and people see our stories. And we connect. We want to thank Brady, for his honesty and his openness. We’re hoping next time his wife Andrea can join in on the conversation, Brady and Andrea, are founders of RODS Heroes, which is an organization that facilitates the adoption of children with Down syndrome, and other special abilities or circumstances. It is a conversation near and dear to our hearts, and a reminder to trust our kids who love us so unconditionally.
1:39
So welcome, Brady Murray.
Hey, guys,
1:46
good morning, Brady. How are you this morning?
1:48
doing amazing. Yeah, doing great. Good to see you. I apologize. I just saw your message about having Andrea join. She’s not able to join us. And that’s on me. I should have asked you know, I’m
2:00
sorry. I didn’t think about it. Lori thought about this morning. I should have I should have said it from the beginning. No problem at all. But there’s it maybe next time. That’s right. Yeah, that’s right. Well, it’s so good to see you. You know. It’s funny how you get connected to people in the world in through social media. And I came across like, many, many people came across a video of one of your sons throwing a pitch out at a Red Sox game. And I know he’s done more than just the Red Sox. But that’s the one I saw. And I was like, Oh, this is this is great. First of all, was like, Wow, nice arm has what I say about my son too. And I go wow, what a? What a fun time that must have been. And then it got me to look in more of what you’re doing and share it with Lorien. Man, we want to have you on.
2:50
Thank you. Yeah, thanks for letting me be a part of this. It’s going to be super fun to to visit and get to know you guys better too.
2:57
Well, one of the things you say and one of your videos is the importance of social media and how it connects everyone and you can get your message out there. So I think I think I’m not a big social media person. But that is I feel like it’s one of the elements that’s really helping to change the narrative of Down syndrome.
3:16
No question. It’s a it’s a miracle. I mean, it’s a miracle. And so just imagine when a child or a mother and father received diagnosis, and they can go and look at these channels on Instagram and Tiktok that are transpiring and see what they’re in for. And it’s gonna be so motivating for them versus, you know, Nash just turned 16. And we didn’t have that when NASTRAN or when Nash was born.
3:41
Can you tell us a little bit about yourself?
3:45
Yeah, absolutely. So I’m a father of seven soon to be 11 children. So we’re in the process of adopting some chips and additional children were very involved in all things family. We’ve been blessed to be able to have two children that have Down syndrome, our son Nash that just turned 16. He’s our second child and first son, and then we were fortunate to adopt Cooper from China in 2016. When he was four, and so coops, coops 11 now. And so we’ve got, like I say, 11 children were seven of which will be adopted. And, and let’s see, so for biological children. So that’s a little bit about us. As a family and professionally speaking. I have been working in the financial services industry since 2003. It’s a passion of mine. It’s something that I love. In particular, we are doing a significant amount of financial planning and life planning for families entrusted with a loved one with special needs. That’s a big passion of ours. Our company is called special abilities network, and then what I refer to as my nights and when weekend’s job is my wife and I run rods heroes, which is a nonprofit organization that inspires families to answer the call to adopt a child with Down syndrome or other special needs. And we’ve been doing that since 2011.
5:16
And that was brought about with your son, Nash when he
5:20
Yeah, yeah, you know, everything you mentioned was like so geared around, you know, disability and inclusion and Down syndrome. It’s, we talk often about how different we are and how, you know, we wouldn’t be downstream advocates if it wasn’t for our son. So yeah, maybe you can tell us a little bit about that.
5:40
Yeah, absolutely. So we had Andrew and I had been married for maybe three or four years. And we were expecting our second child. And we found out that we were having a little boy. And so I was so excited, because I’m a big like, baseball guy. And I had all these visions of playing baseball with my son and being able to go and camping and hiking and fishing, and just we love the outdoors and all those things that I think dads envision when they when they’re expecting their first son. And so the anticipation was wonderful. The day finally came that Nash was welcomed into our family. And he was just perfect. 10 fingers 10 toes, I was doing everything that a dad does, and taking pictures and videos and just loving it. Andrea did such a great job through the delivery. And after he was born, I actually noticed that the doctor and the nurses were, I would say kind of talking back and forth and a quiet voice. And they looked like they had concern on their face. And I just I could sense something was maybe up. And so it was about 10 minutes after Nash was born, that the doctor came over to me and just in a very quiet voice, he put his arm around me and, and the he said, Brady, we think your son has Down syndrome. And that was the first that I’d heard of that. And I was very emotional. I still have those feelings are very raw, tender feelings even thinking about it today. 16 years later, but but it was it was it was very real. It I could feel that. And so I took a few minutes to gather myself, I was very emotional. And I had a lot of fear. In my mind. I had a lot of I was that was a rough time, I would say and so I knew that I needed to gather myself because I needed to go and and tell Andrea who had just gone through labor what the doctor had told me and so I took a couple of minutes. And then I walked over and I knelt down right next to the bed. And I looked at her and I said honey, the doctor told me that they think Nash has Down syndrome. And then I looked at her. And she looked at me and she smiled and she said, Great. Can I hold my son? And I knew I knew right then that you know what this is going to be okay. And I could just tell by Andres reaction that things were going to be okay. And it wasn’t easy. For me, it was a number of weeks and months. And I would say even still to this day, I still process that. But I would say looking back now 16 years later, that was arguably the best day of my life, being able to welcome my son that has Down syndrome into my family cuz I had no idea just how much of a blessing and what journey this was going to gonna take us down.
8:44
What did you know about Down syndrome before?
8:48
I mean, I had some classmates that had Down syndrome. And I don’t I know I didn’t have the maturity growing up to even like, wonder what that was. I just, you know, I didn’t have any negative perceptions to it. I do remember specifically right there in the, in the hospital room in the delivery room, like literally immediately getting on my phone and Googling Down Syndrome and characteristics and life expectancy. And I just started seeing all of these things and and I just was like overwhelmed, right, I was overwhelmed. But I but I will say I’m so thankful for our doctor for Andrea’s OBGYN that delivered Nash. It was in the delivery room that he came to us and he grabbed us and and he said you guys are going to do amazing. This is a very special little boy. And you guys are super super, like lucky to have him and this is going to be a wonderful, wonderful thing for your family. And that was like the first time that I had that reassurance you know, because because right before that the nurse Like, bless her heart, like bless her heart came up to me and just in a very solemn voice that grabbed my hand and just said, I’m so sorry. And like, bless her heart. You know, she she’s doing the best that she knows. But that doctor was inspired that doctors are good man, Dr. Heiner. Amazing, amazing man.
10:18
That was my next question. It was actually for what would you change about the way that the diagnosis was delivered? And I’m so I’m so happy to hear that story. Because I feel like it’s usually the way that diagnosis is delivered that really crushes us. And it feels to me that he puts you on the right step. And the nurse is the nurse that is just we had nurses like that, too. And I think that just comes from the misperception of what Down syndrome is
10:46
no, no. Yeah, they again, bless her heart for like reaching out in empathy and an in care and saying what she said, like I know where that came from. But yeah, bless. Dr. Heiner is hard to because he is absolutely it was a great, great person. It. So it’s interesting that day, you know, that was about 11 o’clock that that went down in the morning, and our family knew Andrews in labor, and they’re coming to the hospital. So around noon or so our family showing up. And we talked to them and, and I was emotional. And it’s about one o’clock that my dad said, Hey, let’s go to lunch. And so me and my dad went to lunch. And I remember walking into, into the restaurant, and out walking out of the restaurant, right when we got to the front door was a couple in there in retirement years, you know, it was clearly their retirement years. And they came out and right behind them was a little girl that had Down syndrome, and I would guess is probably in her late 30s or early 40s right there with mom and dad who just lost him again, you know, cuz, like, that’s kind of when it hit me like, Oh, my goodness, like, Nash doesn’t move out when he’s 18 and go to college necessarily. And like this is something that Nash is going to be with us for, for his whole life. And that was that was that was emotional. And I don’t want to say like emotional bad. But I also don’t want to say emotional good, it was just a very raw emotion that, that took me some time to process.
12:34
Isn’t it funny how we, as parents of children with Down syndrome, or even just any disability, we’re forced to, at the very beginning, look so far forward and place and place a limit or an expectation that limits on our children, like you, you know, you said this is your NASA’s your second child, when your first child was born, that close to their birth, you didn’t, you know, look out and say and have to make that prediction. And I think that carrying the weight of that is what skews the perception and what really would inspire like the nurse to say I’m so sorry, which would you know, and because I know every parent feels that at the beginning, it may be my hope is that the feelings have changed in the last 13 and 16 years, because the information is out there. And definitely what you are doing is is changing the perception as well. I want to say that I feel like where you live, you’ve already talked about inclusion that you had, you know, students with with Down syndrome in your class growing up, which is which shows that there is an inclusive, you know, schooling environment, which is great, I wouldn’t, I wouldn’t put that on you as a as a kid in high school, your frontal lobe is still developing, you haven’t quite an acquired empathy. And that is really the burden of your teachers and the adults around you to give you those skills. But the fact that you went to an inclusive classroom and you have a doctor who who sees the true gift of your child I just wish that for everybody. You know, I think it’s I think that those key elements contributed to what you’re doing contributed. I’m guessing that your wife comes from the same place you do.
14:42
She does. Yeah, we grew up 10 miles from each other.
14:46
And those are elements that I think are lacking in in a majority of society so they you know, I love I love and that’s why we invited start very late, invited your wife on because when I saw it You tell the story and heard that your wife didn’t skip a beat. I just wanted to talk to her about that, because
15:05
that’s pretty amazing. That’s not how I reacted, either. I mean, that’s, I don’t know what her background is, but we’d have to find that out. But I had no experience with people with Down syndrome. So like, You ready, when my son was born, like, his whole life flashed before my eyes in the future, right. And it was not even, it wasn’t real, it was my perception of what his life would be, that did not happen, when my daughter was born. And if it had happened, I probably would have been all these positive things, you know, because that’s what I envision, but we don’t know a person’s life, and there’s a lot of possible negativities in someone’s life. And if the true life flash for your eyes, there would probably be some negativity there. And it could be very, very traumatic. But we go there with a life of a child with Down syndrome. And, and I do I do really enjoy already. So many of the positive things and people in that moment, you know, you’ve got your wife, the doctor, your dad, even, and that couple, and daughter coming out of the restaurant?
16:12
Oh, yeah, it was it was a it was a special day. And really, that that’s a, that’s a large motivation on why we even created special abilities network in the first place is just a resource. Because, you know, there’s, there’s the emotional side of it. But then there’s also the aspect of like, Oh, my goodness, like, Nash is not moving out when he’s 18. And how does all that work with Social Security and him working and like, those were just weights and burdens. And, and like, that’s the work that I had grown up doing is financial advising, helping people to plan. But I had no idea how to do that, for families that, you know, are planning for multiple life expectancies. And so that was a big need that we we identified. And that’s why we went down that route. But I would definitely say that it’s a life’s work to help parents in particular, be able to see their children in a way that allows them to sing the song, they’re meant to sing. Because these kids and these adults that have Down syndrome, they have, they have a purpose. And it’s a very special purpose. And it’s not to be a wallflower. It’s not to just exist, but they have a divine purpose in my mind, that they play in being able to give light and joy and love unconditionally in a way that quite frankly, I’ve never seen anybody else be able to do. And it’s a superpower, that it truly is a superpower that they have. And that’s a life’s work is to help them sing their song they’re meant to sing.
17:47
I will tell you that as a parent, that they are so happy, like, I don’t know what your Your journey has been. We’re here in California. And as far as societal and inclusion, we’re constant, we’re fighting for our child’s placement in the classroom. So, you know, for me, I have fought we didn’t have that message from our doctor when Liam was born, it was a different message. So I have I have fought I spent a great deal of time fighting a lot of the misperceptions. And one of those misperceptions, I felt was my son is an angel. And my son is huge. Because Because what that had done for my son was made the teachers not want to educate him made the teachers feel like his presence was only to for him to be socialized, like kind of like what you would do when you take your dog to obedience school to train them. And, and it took me a really long time to not throw out the baby with the bathwater. Because that statement for me limited my son because it what it did was it it enabled others to distance themselves from the ability and like objectify my son a little bit, you know what I mean? Like he was this other entity instead of being included in society instead of his life having equal potential and possibility. And it took me a long time to really see that. Liam his presence I what I what I find that that love Brady, is that unlike a lot of us humans, it doesn’t come with an agenda. That’s right. You know what I mean? Like it’s, it’s completely unconditional. And the the own and the reason I stopped here is because I feel like I want parents to know that that is a gift. I mean, I work always to be present in my life and I feel like that comes really natural for Liam to just be present, right? I work to love people unconditionally. And for Liam, that just a given he doesn’t have conditions on his love. And boy, if he sees someone that he just turned like is like, I’m good, then it’s, I trust him, I trust his judgment. And the way he loves without agenda, the thing is, is that I think we all have that power to do, we all have the power, I have the power to look at you, Brady, and see you as complete and able with full of potential, I have the power to see the best in you. And, and I think that when we I when when my son has been isolated as just being this entity that has, like you said, and you know what the truth is, this is the baby with the bathwater, it is a superpower, love in itself is a superpower. And the fact that Liam has this, this ability to already be there to be to this place that I strive. It’s, you know, it’s a goal, like, it’s, it’s, um, but it’s something we can all attain. And I feel like sometimes when people look at my son and see him as different, just because he knows how to love, it’s, it’s like an excuse. So they don’t have like, you know, it’s outside of themselves. But I think it’s very important that everybody should know that they, they, if they work hard, they can get to the place that our children who have Down syndrome, who already are, you know. And you it sounds like you embraced that gift a lot earlier than than I did, because I spent a lot of time fighting the stereotypes. But again, I think I want to bring it back to the fact that you grew up and you’ve grown up in a place that’s inclusive. All around. I was curious what you said that a lot of what you had envisioned, envisioned for your son, when he was born, you said a lot of that, like it changed or it was tampered. Can you tell me how and if those visions in actuality, how they changed and or if they changed at all?
22:15
Yeah, I would, I would say that. You’ve probably seen the movie, Finding Nemo. And I would say that’s one of our favorites. My daughter that was that was her favorite movie. And so we’ve watched it hundreds of times. And I know every line by heart and it wasn’t actually until much later in life that I realized that I had a lot of Marland in me Marlon, the clownfish, Nino’s dad over protective Father, that bless Marlins heart, like he went through traumatic experience when getting Nemo into this life. And so he was going to dedicate his entire life to protecting Nemo and making sure nothing bad ever happened to him. And I would say that when Nash was born, I immediately went into that type of a mode where I just didn’t have that with my daughter, like, you know, brenly was born. And it’s like, really, he’s going to conquer the world. And she’s going to do this. And she’s going to do that, like, this is my daughter, and here we go. And when Nash was born, it was more in relation to I got to protect my son. I, like I said, I literally am googling in the, in the delivery room, like how, like, how are the health challenges? And how do we plan and how do we protect. And I just remember, growing up and seeing, you know, kids that were different in how oftentimes they were treated. And I just never wanted my son to be able to experience that. And so we went through a lot of that throughout just the beginning. And it was a constant battle of trying to encourage and inspire and motivate Nash to do hard things. Because that’s part of our family mission statement. We can do hard things, but also trying to protect him and help him to not ever face some of those challenges that I think all too often comes with those that are maybe a little different than others. And so that’s been a constant struggle. I mean, even as as recent as in the last few years, we had one situation. In fact, come up, where I saw a huge baseball guy love the Atlanta Braves. And in 1999, the Braves went to the World Series. And I remember I wasn’t able to go and of course I wasn’t able to go like show as go to the World Series, but I promised myself if the Braves ever go to the World Series again. I’m going and here we are 21 years later in 2021 The Braves make the World Series and me and my boys watch every game. We’re all huge fans. We know every player by name, including Nash like he’s a big fan of And they win the National League Championship Series. And they’re going to the World Series and I’m like, what’s going on? Yeah. And and then Nash looks at me and he’s like, Dad, I go to the World Series. And I immediately look at him and be like, nobody, like, remember, you don’t. You don’t like loud places. And and you remember you don’t like go into these games and and, and he’s like bookie Gabby, if he was so excited because he was go to the World Series and then after I told him that he’s like, yeah, yeah, yeah, yeah, I don’t like loud noises. And I, like caught myself. And I immediately kneeled down. And I looked at him in the eye, and I’m like, buddy, here, go to the World Series with be like, we’re going together. And, and I took him, and we went, but he did amazing. Like, he did amazing. And it reminded me so much of like, don’t be Marlon. Like, these kids are capable, more than what we give them credit for. And, and oftentimes, their own limitations are not set by their teacher, but actually set by us. And so that was, that was a very clear eye opener for me. And, you know, it’s the same thing with coupe. Like, you know, Cooper’s a little boy, we adopted and, you know, I coach all my kids teams and coupe, like, likes baseball, and, and I thought, you know, maybe he could play on the team with this. Like, no, like, kids with Down syndrome, don’t play in baseball, with typical kids. Like, they don’t do that. And then I thought, Well, why not? Like, why can’t he? And so and he’s been playing with us for years. And he’s actually like, pretty good. And So lo and behold, it was through, you know, getting outside of myself that created some of these first pitch opportunities, because like, coops fully capable, the only thing holding him back is Is dad, you know, Dad believes his ex as capabilities are. So yeah, that was a good experience.
27:02
Thank you for sharing. That’s beautiful story. Thank you. Cuz I think that’s, I think that’s a lot of pressure on us as parents. And I think it’s really hard to admit those things. Because we judge ourselves. And we judge ourselves more harshly. So thank you for sharing that. And it, it does bring up a really good point is that, you know, we and we’ve had those moments to where, you know, we do we want to protect all of our children, every, you know, that’s what we do as parents, and it is different. And I think it is different with our children who have Down syndrome, because there’s so many other elements there. I don’t know what your fight for the education system has been. But when, when you’re when you’re so hands on in the mix, you just see other things and you have different fears. And you and you’re right, like the I just thought of my son Liam, because he’ll always go, You know what, you’re right, Mom, you’re right. I just when I said that, it was just like, I sound like Liam, but you’re right. The truth is, you’re right. It’s like we we put more limits, they’re able, and that’s the fine line that we find ourselves walking is changing our own narrative. And, and really like what Liam does, naturally being present in the moment, and, and, and it’s scary, it’s really scary to let them fail, we actually have written in our IEP, let Liam fail, we have that let him get in trouble, which I don’t know, if that’s been said to any child in middle school ever. Can you please let him get in trouble. And that way he can learn how to work through that, can you? You know, it’s, it’s, it’s, um, it, I appreciate your honesty, because I think that as parents, as well, especially when we’re advocating, you know, that that’s, it’s our journey, too. And it’s our journey to let go of what we’ve been told or where what our fears tell us, you know, so So, thank you for for that honesty. I know that when Liam was born, Stephen experienced, and I say Steven, because it’s different. Like, you know, and I don’t know, I know this is like wrong. Stereotyping how we lump mom and daughter and son and and, and father that’s a no but like, that’s kind of a natural thing that people do. And I know that that Stephen received a lot of comments about your, your son won’t look like you or you won’t be able to play baseball with them. And it’s just not true. It’s not true. We have the same ability to to open opportunities for our children. And and I’m kind of jumping around here because I have other questions for you but it it was one of the videos that you have on your website and I had trouble navigating back to it. But I did see like, you have a list of videos on your, on your website for rods, heroes. And you talk about the institutions that children, which surprised me at a very young age, like here in this country, we they used to institutionalize children with Down syndrome. And we all remember what that was and learned about what that did. But you were saying still to this day, at about four or five years old, the children get moved from the orphanages to institutions. And, and you you have a video that talks about that they’re put in a crib. And so they never really live, they’re just, you know, they’re, they’re putting an actual crib instead of like the metaphoric boundaries that we can put on our children ourselves. And you want to talk a little bit about that, because I think that that is a demonstration of the difference between giving our children with Down syndrome opportunities and support them to reach their potential to and in contrast to the archaic, you know, institutionalization. And and what that that does to children any child.
31:13
Yeah, well, it, I mean, as early as the 70s. Here in the United States, we did the same thing. And so it’s common practice in many countries that when a child’s born with a disability like Down syndrome, that they immediately will be abandoned. And, you know, the example of our so Cooper, Cooper was born in China, Tianjin, China city of 14 million people. And when he was guesstimated, to be six months old, he was found on the street corner early one morning van. And that is common practice that when a child is found to have Down syndrome, let’s say that they immediately are left and abandoned. So these children go to an orphanage or baby house is often what they’re referred to. And they’ll typically stay there until they’re four or five years old, at which time and often cases, they get transferred to an adult mental institution. And so when I learned this, Nash was poor, and the thought of Nash, in all of his innocence, and just his love, being put in an institute that is full of adults that also have extreme mental challenges, was just too much for me to to really grasp. And so that’s when Andrea and I really felt strongly that we needed to begin to advocate for these children and help these children be able to be adopted. And that’s that’s ultimately the work that we do with rods, heroes is to inspire families to answer the call to adopt a child with Down syndrome or other special needs.
32:54
Do you want to talk a little bit about where Cooper is now? Because he plays baseball? He’s on his on an inclusive baseball team.
33:00
Yeah, so I would. And I would say, you know, coupe we adopted when he was four. And I came to our family. And I believe that all of these children have a song that they’re meant to sink. Like there’s something inside of them, that they all have a purpose and a destiny, if you may. And with coop. You know, he’s he’s a good little athlete, and he has played baseball a lot. Go figure. His dad likes baseball, so cute, plays a lot of baseball, and he showed a liking for that. But I would say what he’s really good at is Cooper loves the stage. He loves to be on the stage. He loves to be in front of people. He is a showman. His favorite movie is the greatest showman. He is just a showman. And so through nothing short of just a miracle and an absolute tender mercy last fall. We had a pitcher and his wife for the Chicago Cubs reach out to us that follows us on our Instagram channel for ROTC heroes, and say, Hey, we love what you guys are doing. You guys want to come to spring training? And we said yes, let’s go and and we shared that coop loves baseball, and they said, Well, do you think you’d like to throw out the first pitch? And I’m like, Yes, let’s go ahead. So we go down there and coop was you know, we we play catch and we practiced and he went out there and immediately when he got on the stage like he became a showman and he threw a great pitch and he just plays to the crowd and the Cubs watch that it’s spring training and they’re like, you’ve got to come to Wrigley, we come to Wrigley and throw out the first pitch and like, you know, you have to ask me twice. And so we went to Wrigley and on the memorial day game against the Tampa Bay Rays this year. Cooper went out in front of the whole stadium and threw out the first pitch. And you just got to watch this video. And you’ll see what I be what I say he’s a showman, and he has a song inside of him to sing. Like he just did amazing. And I’ll be honest, like, I was so nervous. And I remember sitting like, we were sitting on the side on the side of the field, just minutes before we’re going out. And I’m like, oh, man, like, I hope he’s like, okay, and, you know, I’m like, going into Marlin mode again, you know, becoming a cloud fish like, Oh, crap, how’s my son gonna do? And I looked at him, and I asked him like, oh, Coop, are you nervous? And he was like, no, like, he’s just like, This is awesome. And so he goes out and just crushes it. So we get done. And we have that video and and I share that with a contact that I have that has a connection to the Boston Red Sox and said, try to see this. What do you think about him trying to do this in Boston, and they immediately wrote back and they’re like, We have to have Cooper it at Fenway. And so two weeks later, just in June, last month, we went to Fenway and pear coupe is good. Like, out in front, everybody doing exactly what he’s meant to do. And just singing the song is meant to sing. And he crushed it, like, you got to see that video too. But I know that this is, this is much more than just a first pitch. This is much more than coop, you know, like having a cool experience. This is so much more because coop was put on his treat quarter. And we felt inspired to adopt him for a reason. Because he has a song that he’s supposed to sing. And so that song is to be able to help other kids like him that are in abandoned in these in these orphanages throughout the world. And even here in the United States in foster care coops song is to be able to help those kids get out so they can sing their song. And so we’ve put the initiative out there to the universe that we want coop to go and throw out the first pitch in every major league stadium in the country, and do so to be able to help inspire families to answer the call to adopt a child with Down syndrome.
37:14
His his parents just couldn’t see the vision for his life, you know, and if they could see him now, I mean, and I think that’s I think it’s beautiful. And I think that him I know, Liam has a really good arm his first, his first ot played on the farm team for for the Dodgers is that I get that right? I always get that wrong. But he played on foreign pay. So his his arm, you know, and whenever he would go to PE or he’d have adaptive PE, the coaches were always like, what they were expecting, and then Liam would come out and just throw it and they’d be like,
37:52
how many times I’ve heard a PE coach say, you know, he’s got a good arm, I go, No, he
37:57
does. And I think it’s beautiful that, you know, people are able to see, to really see like, it’s just we can believe some things without seeing them. Yeah, but a lot of people need to see it because they won’t believe it. They don’t believe it. And that’s on the path of changing the narrative that has been out there for so long. Because, like you said, the institutionalization, that, that that’s not a real part of the A person with Down syndrome is ability. That’s a, that’s a Yeah, that’s from the outside. And that’s because of the Industrial Revolution. It had nothing to do with what people with Down syndrome were able to do. But what it did was it took, you know, a group of people, and then it created a perception of their ability. And, and I can’t I just recently because we were we were talking to someone about the institutions and you watch those videos. And it scars you and those images don’t go away those him I look at like the same I see the emotion that you have for your son and I look at my son and his innocence, his his his beauty and how that just gets squashed. And I think, you know, the neurotypical adult can say can look back at their life and say that at one point where their innocence or their trust or their belief was a little squished or squashed or removed some people it’s removed forever, but they still have the opportunity to exist in this world. And that isn’t the the opportunity that isn’t the same situation for my son or for individuals with Down Syndrome and definitely not historically. What what the situation is, I love my son and he’s, he’s beautiful. And the thought the thought of that I can see like you have your Cooper, who you’ve supported to live his life, you’ve given him the opportunity to actually live his life to sing his song, if you will, and, and that that was essentially thrown away. You know, and that has that is what has happened to our children historically. That is what continues to happen to them in the education system for, for the most part in most parts of the country. And you’re changing that, and Cooper’s changing it because there’s, you know, you have that video, this is what I want to say, because I don’t know if you’ve listened to our podcasts by talking about a lot about education and IPs. Take a video of Cooper throwing out the first pitch to your PE coach who says that kids with Down Syndrome have low tone, and are unable to do these things, or the video of Chris nicot. Crossing the line of Iron Man, like these stories telling these stories do change the narrative, because it allows people to see the ability of,
41:04
you know what it would have done for me, when we talk about when we got the diagnosis. I mean, like how our kids life flashes before our eyes in my mind. And we’ve talked about this many times. I was like, Well, it’s my boy, I want to throw the ball with them. You know, that’s what my experience was as a son. And in my mind at the time of diagnosis that was gone,
41:27
because you were told it was not going to happen. And I didn’t hold any limit
41:32
Cooper throwing the pitch it Fenway or Wrigley Field I mean, those are like two of the most epic fields to begin with. I mean, for that to be his first two is amazing. But but I didn’t see that not that throwing the ball at my son is that important. It is important. It’s a bonding is important. But I’m stories in so much more. It’s not just about I can throw the ball at my son, it’s that I should be open to I can do anything that I may doubt at that moment. Right? This is just the part that probably is easiest for me to connect to. But I should expect that I can have all the experiences with my son, like any child. Right? And and this is a way to get through to that young dad brain of mine when I had Liam, you know,
42:16
yeah, it’s it’s getting outside of our clownfish, our inner clarity, and being able to see past that. And you know, this amazing how many hundreds of times I watch Finding Nemo and it never dawned on me until much later that like, that’s the whole point of the movie, like Nemo, singing the song he’s meant to sing. And he’s the one that saves everybody in the end by rallying the troops and going in the net, getting all the fish to swim down. Like there’s capabilities, there’s ability that exists there. And there’s mission, there’s divine call that these kids have to sing a song they’re meant to sing, and they exist within them a superpower to love unconditionally, unlike anybody else that exists in the world. And so the only thing holding them back right now is our own perception of what their limitations are. And once we can get past that it’s fun to see see where these kids can go.
43:10
Yeah, I think there’s a part where Dorie says to Marlon when he says but I just don’t want anything to happen to him. And then she says, What if nothing ever happened to them? Him? How will anything ever happened to him? Yeah, exactly. And that I think that’s the it’s, it’s a really great metaphor. It is true. It’s like what do we allow our children to do? Any, you know, in with any child, but what? I think that’s a metaphor that parents can really understand. And grasp is that, you know, that the difference is I mean, and the difference is you Nash, but also Cooper like when you when you I mean Cooper is a really great example of, you know, he was abandoned on a street corner when he was six months old. They didn’t see his life as potential, they didn’t see his ability, as his story being as important as everyone else’s story. And, you know, he comes here, and three and a half years later, he’s a it’s a, it’s a completely different story.
44:15
Yeah, a lot of times all these kids need is a shot, especially those that are in orphanages or foster care. Like they just need a shot, they need a chance. And when families give them a shot, those kids typically surprise their families with what they’re capable of.
44:32
Your your wife calls them teachers, which I believe all of our as parents, we’re, we’re very blessed to, you know, have these little teachers come into our lives and teach us a lot. I think that’s I honestly ever my daughter has taught me so much about life and my life and perspective and, and, and strength and you know, and then Liam is a totally different set of lessons and as funny as it is, the lessons that I get from Liam just about presence, about love about persistence, about making your dreams come true. Because, you know, we have a joke in our family that like, if Liam wants something, he’ll, he’ll want it, and he’ll make it happen, like, he will make it happen. And our daughter, My daughter, and I were talking the other night, and she tried to do what Liam does. And she like killed. He not only asked, he doesn’t ask for it over and over. And that’s what it was perceived as he just keeps asking for it. But he is very smart in the way that he doesn’t ask for it. He tells you what it’s going to be experiences he tells you. And, and to me, that is such a great lesson of how we create things in our life, I think is a very specific lesson that we learned because Liam doesn’t know that he’s overcoming any misperceptions. Liam doesn’t know that the world thinks he’s less than or not able, Liam just goes and lives his life, and does things. Yeah. You know, and but in doing that, he breaks down walls and boundaries, and he changes every person that he encounters, because most of the time they come at him thinking they know him. And, and he changes that. That’s right. No. And, and I love, I love what you’re doing. Because I looked at your website, and and I was adopted. And I, I know the value of being told your value. I know the importance, I know the damage it can do when you’re told you don’t have a value. And I know what the difference is, is when people see your value. So adoption is for any child and and just so important. You were talking about, there’s one about do they go to school with these kids in the orphanages do they go to the school I wanted, and you said that they do. But they’re seen differently. Sometimes the other students looked down on them. And I just wanted to take every child that’s in an orphanage and let them know that they’re a gift and don’t listen to people who have whatever going on in their life that they want to make other people feel bad because all they need to do is get past just survive, get past a certain point. And then they get to start creating, they get to call they get to make their life, you know, and I think that, that that’s the power, like just because somebody else didn’t see your value doesn’t make that your value. But what you’re doing by making this opportunity for children with Down syndrome to be adopted, because that’s not the only that’s not the only child that that you also provide opportunity to be adopted for Am I correct? That’s what I was looking at the website. Yeah, many, many children.
48:09
Yeah, children with special needs, or other unique circumstances we definitely advocate for as well.
48:15
But by doing I think, twofold is one your family demonstrates. And you really highlight the actual journey of a child, a child with Down syndrome, the ability, the parents journey and the truth of that and love your honesty. You’re giving other parents because you’re taking care of the fees for adoption, which is like the biggest obstacle for some parents, you’re giving them the opportunity to have a child with Down syndrome in their life. And there’s something about that being highlighted to change the narrative because in my mind, I just see it as people one day coming to their senses and knowing, oh, I have to have a child with Down syndrome. Like I just, I just you know what I mean? Like that’s, that’s really what I believe in my soul. I didn’t have any experience with children with Down syndrome going up, there was only one time I went into a Burger King. And there was a young man working who had Down syndrome. And I only saw him once. And I remember the friend that I was with went and gave him a tip. He was, you know, cleaning tables off or doing what everybody else does. But that was my only experience. I my experience receiving the diagnosis. I was told that I should you know, I could have gotten a test. There’s like all this language that tells me No, this is not good. But once I was on the path, it’s like you see that that story is so false that you really do want I think the world would be a better place if everybody had this experience. And it’s not an ableist experience. It’s not, you know, this, it’s I don’t I don’t, I’ve never been able to find the word for what this journey has been, I’ve never really been able to find a concrete articulation. Because I don’t want to lean into anything else you don’t I mean, it’s, it’s an but but by you giving this opportunity one, you’re saying, you know, this is an amazing experience, folks, you know, and you’re, and you’re giving people that opportunity. And I think that that not only does it change the world for that child, it changes the world for the child because they’re not bound by the limited mind who doesn’t see their value, right, or the limited resources once that child is discarded, because that’s what’s happened. They are given the opportunity to live their life really, and, and you do say, also on your one of your videos, I’ve listened to a lot of your videos on your website, that, you know, at first, a lot of people will say, Oh, it’s so good for this child, what a blessing for this child. And then you say, which is definitely the experience and what we experience when we’re talking to teachers in a school, you know, because we get the same thing, it’s the benefit of the child, for the student, for them to be a part of the class, for some reason, for some reason, that became the conversation. But the truth of the matter. And it’s something that you also say is that it’s the families that are lucky. It’s it’s society, that’s lucky, it’s classmates, classmates that are lucky, and it changes the world. And in honestly a way that I think the world needs to be changed. Because there needs to be more love, there needs to be more compassion, and there needs to be more empathy. And we don’t gain it by having a child with Down syndrome come into our classrooms, so we can be more loving and empathetic and compassionate. It’s because we see it demonstrated in a human, and then we can model off of that human. And I think I really, I think there needs to be a little bit more modeling of, of our children with Down syndrome, I think that they kids need to have them in there. Like a child needs to have a child with Down syndrome in their classroom, because they already hear the limits that perhaps society or parents have told them about their classmate. And they see firsthand, it’s not true. They also learn that they, they can do hard things. You know, if you have someone next to you, overcoming obstacles and misperceptions, you know, Hey, man, if, if you no Liam can do that. I can do that. You know, and, and, and you’re giving people the opportunity to experience it. And
52:52
that old adage about surround yourself with people that are more talented than you? Yeah. And having Liam in the classroom shines a light of wear? Oh, I could do that.
53:04
Yep. And people don’t see that. Right.
53:07
It’s always thought the opposite way. But
53:09
yep. Yeah, we, I mean, you guys know exactly what what I mean by this, but we find that national Cooper help us to become our best selves. And I believe firmly that the person that we become is determined by the books we read, and the people we surround ourselves with. And I tell my kids all the time, show me your friends, and I’ll show you your future. And I just feel so amazing. Having kids with Down syndrome, because like, those are the people I want to be around, you go all the way back to, you know, the day Nash was born. And I see, I see this beautiful little family coming out of this restaurant and me feeling like Oh, my goodness, this is the path that I was going down. And that that was a perceived negative when in reality, fast forward 16 years later, and it’s like, yes, like Nash and Cooper you to be with us forever, and that we get to care for them. And in return, they’re caring for us much more than we’re caring for them. And not just me and Andrea, but our entire family and our neighborhood and our church group and the schools and just our community as a whole. It’s pretty awesome to get to share that with everybody.
54:23
And we’ve heard so many stories about so many stories, and it’s happening more and more because just like the institutions of letting your kids do so many adults with Down syndrome living on their own getting married. And so keeping that in the fold to you know, knowing that, that the limitations that we once thought of are dropping away. Yeah, that’s
54:47
right. You’re right. You’re exactly right.
54:51
I was just gonna say because you were like they’re, they’re, they’re doing these things for us. I wonder and I wonder about Liam like, This is Liam aware of this, this response of ability that he has, or that there’s
55:04
pressure. No, he doesn’t.
55:05
But but it’s um, I think he’d be good to talk about net like Nash. You told that guy I love that story. And I thank you for your honesty to about him going, going to the baseball game and oh, the World Series. Yeah, the world, the world series about going to the World Series do want to talk a little bit about Nash like What is he doing now?
55:28
Nash is the is he just finished his freshman year he was on the student council. He was invited to participate in that that’s not something that he ran for, they actually came to him and said, Nash, we want you to be on the student council and help us to plan the events. And I think he is like the inclusion officer. He loved it did a great job with it. Nash holds the bottle flipping title for American Fork junior high. I think he got at three times in a row that he landed it. And so he’s like a really good bottle flipper. He loves doing that. And so he is, he’s amazing. And I would say that he and Cooper are just like ying and yang peas and carrots, they just play off each other so well and they care for each other so well. And they share a room and they’re just best friends. And they’re actually very complementary to one another. So coops not super verbal. And coop doesn’t read or anything, but Nash is very verbal and Nash reads and so you know, that’s a positive thing for coop. And then conversely, Nash isn’t as maybe athletic or outgoing as Cooper, whereas Cooper’s very extroverted and very athletic. And so when they’re together, they just play off each other, and they’re very complementary to one another. So it’s pretty awesome to see that tag team working together.
56:52
That bottle flip is such a beautiful analogy to me that I could never have envisioned what a bottle flip would be when I had Liam right. I mean, that wasn’t a thing. Yeah. When I had to think when you said I was Googling, and it was 16 years ago, yeah, I guess we were googling but, you know, there was a time where we didn’t know Google was the bottle flip. So here, I can’t even imagine what our future is going to be right. And in a moment where we’re for some reason, pressure does parents or we have these ideas of I have to think about all this future when we don’t know what the future is, and the potential what the future is, it’s out of our mind. That’s right.
57:28
Well, I think the bottle flip actually like, one I find because Liam does his thing with his cards and his bears that he loves to do and, and at first, as a parent, I would watch it and I’d get in, I’d become IBM Marlin and I’d get anxious. And I’d be like, what does that mean? What does that do we need to stop this, it’s like, I want you to be able to, you know, do the same thing neurotypical kids do, or if you go to someone’s house, it’s something that you’re going to do, how’s it going to be viewed all of these things in my brain? And then one day, he was like, Mom, will you sit with me? And flip bears? And I was like, okay, okay, what, five minutes, and then we’re gonna read because for some reason, reading to me, I think was a like that, to me, I viewed as this is going to be what you need. But I sat there with him. And it’s like meditation, like, we just sat and, and then it’s a game and like, it takes skill to like, hit, hit, hit, try to hit the bears sometimes. And it’s, it’s a lot. Once I got outside of what I thought it was, once I got outside of my judgment, and I was able to be there with my son, as my son, and know that my son was perfect and knows what he’s doing. I could enjoy. I could enjoy that. Right? I didn’t judge it or, you know, and I’ll be honest, that like your bottle flipping that’s like, hand eye coordination, that’s, you know, motor skills that we were told that didn’t exist. That’s like, you know, how satisfying it is, when it lands so many. There’s so many things there. And you’re right, we get out of our heads, and we we stop this dialogue in our head, and we’re present. And I think that we’re even able to just relax and know, know that they’ve, they’ve got this we don’t we don’t have to continue to perpetuate the stereotypes or the misperceptions. Not that we’re doing it in our actions, but in our minds, I know that, you know, even like buying him a book bag yesterday, like, Sophia could, I mean, she had Oh, she’s gonna kill me. She had a My Little Pony birthday party when she was 10 because they’re cool. And you know, I’m buying him a book bag for seventh grade. And I’m like, is Yoda babyish? And I know like, I have so many friends my age, that would be like Yoda is not babyish. But I just get so scared. I get so scared and when I’m scared, I’m not trusting that my kid knows I’m not I’m not actually walking the path that I am saying that I’m setting before him. I’m I’m saying I’m setting this path without limits and with supports to reach his potential, but I’m not, I’m like, a little bit off into the right behind going. I’m just, there’s the path, but I’m gonna be back here, just in case I’m just gonna be watching. And it’s so much I’m going to be watching, but it’s so much more enjoyable when I joined him on his path. Yep. Right. And I can I can I can be there with him.
1:00:25
Yeah, you think of our children? They accept us for who we are? Unconditionally? Yeah. And the least we can do is accept them. For me they are unconditionally?
1:00:38
Absolutely. Absolutely. And at the end, I love that you’re giving other people the opportunity to be accepted unconditionally, by children with Down syndrome. I want to I want to talk about rods, heroes, and we’ll put a link to that in the show notes. And also, I think that special abilities network can Is that Is that something that you advocate? Or is that like a business model? Is there like that you’re setting up trusts for?
1:01:10
It’s a good question. Really good question. As far as the mission and vision behind special abilities network is to give every family in America, entrusted with a loved one with special abilities, the opportunity to get the planning they need, and they deserve. And so the planning side of things comes really around life planning. And so there’s so many different decisions that need to be made for us, as families in caring for and being caretakers of someone that has special abilities as we like to refer to it or as the world or refer to it as special needs. And obviously, that includes this the special needs trusts or the the, you know, housing planning or the income planning or how to navigate through social security, all of those are super important things that we help families with. But at the end of the day, the purpose and the mission is to help these families, not only let their child sing the song, they’re meant to sing with those families sing the song, they’re meant to sing as well. We help families plan vacations and be able to do those things that they never thought were possible before, and are able to do now that they have a resource and a team to be able to help them navigate through it.
1:02:18
Well, that may be a good future episode as well. We’ve had some we’ve we’ve had an attorney on about special needs trust a good friend of ours and Ricky Perez. But it’s always good to have other options and voices. So
1:02:32
how do you do that? How do you plan? Is that something that you just help them plan with their finances? And and what is the fee involved in doing that?
1:02:40
Yeah, that’s a good question. And so keep in mind, the mission and vision is for every family to be able to get the planning they need, and they deserve. And so as we know, Down syndrome or other disabilities do not discriminate against age or race or color, or any type of discrimination that happens to those that are wealthy happens to those that are maybe don’t have the financial means. And so our mission and vision is to give this service to everybody. And so everybody’s circumstances unique and different. And so we customize the plan, and the strategy, very specific to that individual. And so I have a tremendous team, great teammates all throughout the country of people that are educated in this that have the schooling and the background, and more importantly, the life experience all of our teammates, have special abilities children themselves and live it and know what from firsthand experience. So pretty special, pretty special operation we have going there.
1:03:43
Because I assume things are different in each state that must be different,
1:03:47
very different in each state. That’s right. You know, it has to be very customized because I mean, you look at this Cooper and Nash, they’re very, very different in relation to their needs and what what one’s abilities are versus another’s challenges, just like any other child, and so we’ve got to customize it accordingly.
1:04:07
And for non English speaking, parents, do you have accommodations for those parents?
1:04:13
The Wonderful question, we haven’t faced that as often as maybe you would think. But for those that do speak English as a second language or need accommodations, that’s absolutely something that we would work to our best ability to accommodate.
1:04:31
Wonderful. We’ll put a link to that in our show notes as well as to rods here rods heroes now. Do we talk do we talk about religion we don’t really talk about specifics of rods heroes because I want to talk about we’ve talked about it vaguely, but I want to talk about it specifically and then also how people can help and participate in that.
1:04:53
Rods heroes again, the purpose being inspire families to answer the call to adopt and so there’s three areas where I find fit families and individuals get involved the most. First and foremost, as they become what I’d refer to as an unstoppable advocate, they, they share the message of these children. There are individuals that are advocating for these children, the way that we inspire families to answer the call is simply by storytelling. And so they take these children’s stories, and they share it through their social media, and they talk about it, and they do a great job, they invite us on podcasts like this, you guys would be considered an unstoppable advocate. The second way is that individuals, through their donations are able to bridge the gap for these children to be adopted. An international adoption of a child with Down syndrome on average costs around $40,000. And rods heroes provides adoption grants for children to be able to be adopted that have special abilities. And so it’s through those donations that we’re able to offer these adoption grants and help these families bridge the gap. And then the third thing, and the thing that I’m most passionate about is obviously consider adopting. And so adoption is not for everybody, I’ll be the first person to say that, that there are many families who have the ability they have the life experience, they have the financial means they have the home and the ability to be able to care for and open their doors to another child. And so those families that consider adopting, they truly are the ones making the miracles happen.
1:06:25
Those fees, those $40,000, you can donate I saw a little girl who made jam, and donated her fun that she was hoping to go to Disneyland with, to help bridge the gap on on fees.
1:06:37
You know what’s amazing about that story, as Brooklyn began fundraising for bond so on is the young man, a little boy that has Down syndrome. He’s in Columbia, Brooklyn started advocating for Vaughan in 2013 10 years ago. And for 10 years we’ve been advocating to get on a family. And right now, Vons family is almost ready to travel to Colombia and get them and get him. And so it took us 10 years to be able to find bonds family, but I believe in my heart that every single child has her family out there. It’s just a matter of us finding them. So Brooklyn’s mission is being accomplished this year. Way to go Brooklyn,
1:07:19
how old is bond as Bond 10? Or was he Oh, bonds
1:07:23
almost 16. Now? Yeah, Vaughn, I think may have just turned 16 If I’m not mistaken.
1:07:31
And I think that the thing that people that can be scary for someone thinking to adopt, but you have some before and after pictures, that it just shows the importance of the the treatment and the environment that these children are in. And if at any moment, at any moment, you can change their story. You know, it’s
1:08:00
you know, people get scared, sometimes. And we have a choice to come from fear or love. So if you have the ability, I think we’ve we’ve talked today about how the fears are unfounded. And, but the impact that you can make on a human, to just have a life, and it’s a gift back to you as well. But if you took the characteristic of special abilities, and it was just adopting someone who was 16, or 13, or 10, who was in a bad situation, I think if you look at it that way, you know, it opens, it can open people’s minds, if they’re thinking about it, because it doesn’t seem as scary, you can see the gift of what you’re giving to take somebody out of a situation and then give them a life with love. I’m just trying to break it down. Because sometimes people will hear, you know, adopting someone who’s been in an orphanage under these circumstances, but you turn someone’s life around in a in an instant, and you’re turning your life around in an instant. It’s like if you have a garden that you don’t go out to and you don’t water it for an entire however long and everything in there is kind of appears to be dead. And you start to give it water and you start to take care of it. It can blossom and bloom in ways that surprise you, because you’ve thought of it as one way. And I love that you’re giving. You’re allowing for that opportunity. I think of those children who have to overcome misperceptions To the extent that people are believing that their life doesn’t have a value, and you’re changing that narrative, and I thank you for that. Yeah, one child at a time, you know, and if you have any doubts, look at Cooper. I mean, look at Cooper. And that’s, and I don’t think Cooper is special in this circumstance, I think that’s, that’s the truth of life, when you when you see it as having a value, and when you love it, and support it, when you nurture any life, that’s all you have to do. It’s just, it’s just changing your mind and changing your heart and changing the circumstance for a life to flourish. And, and become you don’t know what seeds, you don’t know what seeds lie in any of these kids. And I and I thank you for, for changing for changing it, I think of those kids that they took out of the institutions, when they were uncovered, and, and just their faces, you know, they weren’t given that chance. And just give people a chance, you know, because our kids would give them a chance.
1:11:20
I would say adoption has been one of the most difficult or hard things that we’ve ever done. But it’s been the most beautiful heart that we’ve ever experienced. And it’s just a super special special thing. And something that gets us outside of our comfort zone and proves that we can do hard things. And in return, these kids get a shot, and they get a chance to be able to sing the song they’re meant to sing.
1:11:46
You might not have the ability to adopt a child, but you can donate and help and help to make it possible for someone who can I also go on to this, go onto the website and look at the videos of that are that are on there. There are a few podcast interviews. There’s a lot of stories that are on there. And there’s very honest and open stories, I think it’s a great thing to share too. Because it it, it follows what your your your journey, your journey is. And I think that it can change it for parents coming behind us, you can get rid of a lot of those fears. Your wife says it isn’t something down syndrome isn’t something that you necessarily would have chosen for your child at the time that they were born because you really didn’t know. We don’t know. We don’t know what that story is. But now, she wouldn’t change it. And I think that’s the truth. I think I think for the most part won’t. And I hope it’s changing. I have, I believe it’s changing. I have faith that it’s changing. But for the most part, when most of us received the diagnosis, it was a wait. And and it doesn’t have to be that anymore. And over time being on the path, I think that that weight is lifted. And we’re like, oh, whoosh. Well, what was that that I was doing? So there’s some really great honest stories on your website, as well.
1:13:21
Thank you. Yeah, and I would say we also have a rods heroes app that you can download on any Google or or Android or Apple device that has listed all of the children that we’re advocating for right now. There’s over 100 Children listed on that. And anybody that is curious as to adoption and in the process to adopt and what children may be out there. There’s there’s children on there right now.
1:13:50
And share those videos of coop throwing out the first pitch.
1:13:53
I know that’s so fun, isn’t it?
1:13:55
It’s so fun, radius or anything else that you want to add or talk about today. I
1:14:01
think this has been amazing. I really appreciate you guys letting me come on and we’re excited to be able to see see where we can take this as a whole.
1:14:10
I love and appreciate what you’re doing because it taps into so many parts of my life.
1:14:16
Thank you so much. Have a great day. Yeah, guys, you too. Love to the family. Love. Just keep swimming. That’s already bye bye guys. See ya.
1:14:32
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If We Knew Then - A Down Syndrome Advocacy Podcast 