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THE SJ CHILDS SHOW-Advocating for Autistics, One Story at a Time
🎙️ Welcome to The SJ Childs Show Podcast! 🎉
Join Sara Bradford—better known as SJ Childs—as she bridges understanding and advocacy for the neurodivergent community. This podcast shines a light on autism awareness, empowering stories, expert insights, and practical resources for parents, educators, and individuals alike.
Brought to you by The SJ Childs Global Network, a nonprofit dedicated to supporting autistic individuals and their families worldwide, this show is your weekly dose of inspiration and actionable ideas. Visit sjchilds.org to learn more about our mission, find resources, and connect with our growing community.
Catch us on platforms like Spotify, Apple Podcasts, and Goodpods—or tune in Fridays at 8:30 AM EDT on the Helium Radio Network’s Life Improvement Radio (Channel 1). Together, let’s foster a brighter, more inclusive world! 🌟
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THE SJ CHILDS SHOW-Advocating for Autistics, One Story at a Time
Episode 249-Reimagining Support Systems and Breaking Barriers in Disability Support with Digital Advocacy with Nicole Smith
Ever wondered how a career in constitutional law can ignite a passion for human rights advocacy? Nicole Smith, our esteemed guest, takes us through her inspiring transition into nonprofit work, where she's breaking new ground with digital campaigns that touch hearts and change minds. Her journey is a reminder that when we're armed with education and empathy, we can reshape the world—one freed prisoner, one enlightened influencer at a time. She brings to life the idea that our upbringing and the values we're taught can spark a lifelong commitment to justice and community service.
We then turn to the triumphs and trials faced by children with disabilities and their families, stories that often go unheard. The tales we share aren't just about milestones and inclusion; they're about the power of support networks, both online and in our neighborhoods, that provide much-needed guidance and solace. Nicole's insights challenge us to reflect on the beauty of life's simple moments and the profound lessons we can learn from the resilience and joy of these extraordinary children.
Our discussion culminates with Nicole's latest groundbreaking venture—a disability committee dedicated to filling the voids in support systems for those with disabilities. We examine the significance of comprehensive care that goes beyond the hospital walls, the importance of recognizing and valuing every individual, and how the concept of 'symptom industries' ties into our cultural perceptions. Walk away feeling energized to contribute to this collective mission of building communities that not only offer aid but celebrate the diversity of human dignity and strengths.
Welcome to the SJ Childs Show, where a little bit of knowledge can turn fear into understanding. Enjoy the show. Hi and thanks for joining the SJ Childs Show today. I am excited to welcome a new guest, nicole Smith. I am so happy to have you here today. Thank you for joining us. Let's just start at the beginning. Tell us a little bit about yourself and what brought you here today. Well, how far do you want me to start now? I mean, you know if it happened at birth? No, just joking.
Speaker 1:The person that I came out of that would be Lori, my mother, a wonderful lady, and my dad, glenn.
Speaker 2:So I have great parents and yeah, so I mean, like I said, I can start back at the beginning or I can start somewhere in the middle, yeah, or you can start where you're at today and then work your way back to that, so it's fun, so whatever you're comfortable with.
Speaker 1:Well, I typically like to introduce what I do for a living. That tends to be the most unique thing. So, starting out of school, I got a master's in law and public policy, sort of landed squarely on the communication side of the global human rights world. So I worked with, I mean, every corner of the world. I touched various different issues, from the child right of Uganda to the sex slave of Afghanistan and really anything and everything in between.
Speaker 1:So I've seen a lot of really rough things that that can happen to the human person and that deeply affected me enough that I wanted to start my own nonprofit that would really focus in on the root cause of really any of those offenses to the human rights world. And one of those offenses to the human person was the belief that you could measure human value by another criteria, other than merely being a human. So that's a can be anything from. Hey, you know they're the wrong color and therefore I can enslave them to the wrong sex, to the wrong socio economic background. You know there's a lot of ways of doing that. So educating on the foundation of human value to as a means of transforming the human heart so that we don't hurt each other as much, so that's what I do for a living.
Speaker 2:Yeah, wow, and that's big, that is big, big, big. So thank you, thank you for for taking that on. There is so much to be still learned and experienced in so many different cultures around the world and how they, you know, raise their children to believe, and how they and I believe personally that that's where it starts, that's where our future of our all, of our generation start is with children.
Speaker 1:Yeah, education, yes, educate educating them.
Speaker 2:A quote that we always say is a little bit of knowledge, transparent understanding. Yeah, I think that really starts there. So, oh, tell us about the journey and you know, I'm sure you've picked up a lot of lessons and things along the way.
Speaker 1:Yeah, actually, I mean, it's kind of one of those things that you end up doing things that you didn't ever imagine. You know, I had started sort of believing that I would be in the constitutional law world. Honestly, I actually did. That was actually my start was at a constitutional law firm, but in a different capacity. That what I realized not as an attorney, but more on the communication side, obviously some it was this big leap into an unknown during a time in which it was definitely in the digital space was relatively new, especially to the nonprofit worlds.
Speaker 1:You know corporates, corporations were sort of getting on to the realization that social media was going to transform how we were going to be advertised and reach people, but the nonprofit world is very slow to that. So I used to go to these conferences in which you know everybody goes around the table and they're like hey, you know what company do you work for, company, you know what are you doing? So people like I sell shoes and I sell coats and I sell, like, digital services and all the stuff, and they're like what do you do? And I'm like I free and religion, religious minorities from Afghanistan and Sudan, and you know they're like that's really deep and like why are you here?
Speaker 1:because people should be freed from a Sudanese prison for being a part of minority faith and people should be seen as people and and be reached in places that we can't necessarily go and I can't and can't touch an exact change, and sometimes that's the way the world works you can't go to those places and really be effective in advocating. So it was a really interesting approach in which we would raise awareness of these individual plight to the point in which very large political figures would take a hold of their race and they would do diplomatic measures to have them released. So we had one that was actually included in a, the Iranian deal and he was released from that measure. Another that got the attention of Angelina Jolie and the Pope and she was freed. On those really large scale campaigns that did some pretty awesome things that I don't think would have really made a dent, you know, if we did traditional means. So, yeah, it was quite an interesting challenge and to basically trailblaze a new area, yeah, and advocacy.
Speaker 2:What do you think it started for you? Where did this idea, or was it, you know, traveling to another country for your first time, like where did this desire start? Oh, that's a good question.
Speaker 1:Well, I think it really started with my parents. My parents were really strong into community service. My mom and dad dealt with at-risk youth in our community as youth ministers and my mom actually was a counselor for juvenile detention-centered girls. So very early I think my first experience with suicide was at four years old and a lot of realities that sort of hit very hard that I had this really strong family unit. I had a wonderful mom, a wonderful dad, a brother, that we were really close knit. But we saw what that division within the family unit did to people, to children. And these girls were imprisoned because some man told her that she should do X, y and Z and got her addicted to drugs and pregnant. And then she finds herself in this terrible place in which my mom was just so gifted at showing people their inherent worth. You know she would just take hold of these young girls and just like foster this desire to love themselves the way that God loves them.
Speaker 1:And yeah, I feel like that was my start. It was very young and if someone was in need you got up, you helped them. But I don't think I ever could have imagined, especially since I didn't grow up with internet. Yeah, not like I thought, hey, I'm gonna grow up and use this new tool to do some different things.
Speaker 1:But yeah, I think that heart really just my brother and I really oriented that way because we were taught that way, and so I just again, originally the thought was more in the legal realm to on the constitutional side, but then the global stage sort of opened up to me in a way that I was like, wow, as Americans we really are very deeply sheltered. We have a lot of problems of our own. Truly, we really destroy the human person internally in a very quiet way, a very hidden way. These other cultures that tends to be very open, in which they do these sorts of things, that I just these cultural norms. I had two daughters, some of those early cases. I just couldn't believe that, what these little girls had to go through. And of course, I give birth to two little girls and I'm like, oh my gosh, I couldn't imagine having to view the world through this lens that allow you to sell your child.
Speaker 2:So but yeah, and that piece that you get when you become a parent and you see the world for what it is and what it can be, what type of? As I've been kind of thinking what, how do you protect yourself and now, as a mom, your girls? What kind of layers of safety do you put down in protection?
Speaker 1:Well, at first and foremost, I think it's again any change is done internally. First we have to understand that personally we are inherently valuable because we are human beings. Not know if answer butts, as I say right, there's no citation that culture can place upon you to increase or decrease your value. I teach my children that for themselves, so that they can see that in them, so that when they walk down the street they see someone in need, that it becomes without question that they should do something because that person has value, just like they do. And really to see the world through that lens of we all hold that inherent value. As far as like that's how I want my children to grow up.
Speaker 1:But I have an older daughter that's seven, and then I have experienced a season of infertility that gave way to season of miscarriages, and then that my second little daughter was born in distress. So she was born not breathing and sustained brain damage during the birthing process, which Now she has rebelposi, which is a dysfunction of the muscle groups due to that brain damage. And of course that translated different for every person that has CP. It can be very extreme, it can be very mild, but in these early years it's for her lots of dangers. She couldn't suck or swallow, so she couldn't self-feed. She would stop breathing a lot, four or five times a day, turn purple. It was a hard season because you just don't know what's to come and of course you're afraid that she's going to die and all these things.
Speaker 1:But I tell that story just to say too that this mission that I had in a global scale was given flesh and blood through her. We feel that in our family unit because we see that the world, because she walks in a walker, or because she's nonverbal, or because whatever might translate her value differently, because she can't do a standard output, her life looks different. And especially for our oldest, we kept telling her look, hey, this is one of these moments in which you get to celebrate another person for just who they are. We can't help what happens. Bad things happen, but we can't help what we do with that.
Speaker 2:And.
Speaker 1:I just. There has been challenges for our oldest, obviously. We've walked through that in a way that I don't know day by day. Right, that's how life is, but I'm just seeing her flourish and that was just such a gift, absolute gift the sibling care the sibling caretaker.
Speaker 2:such a huge, almost like invisible cloak to the world? Right yeah, give me emotional. It's number one. I have an all autistic family and our oldest has much more severe needs than our youngest, who really steps to the plate and is the big little sister all the time and I see how, like you said, the rate of value that she holds him in and herself, thank goodness, but it never wavers. It's not, it's sibling. They're only two years apart, so it's a little bit. We get to see that sibling rivalry a little bit still.
Speaker 2:And I think that I'm an only child, so I'm not quite sure what that looks like, but it looks healthy to me. You know if it presents itself here, but it's so fascinating to see these little caretakers, and some of my favorite episodes I've done in the past have also been with sibling just relationships, and I love to have the even the nonverbal sibling join and feel like they're a part of it, and with my experience I am able to take the time to wait for the nonverbal communication or to watch, for you know those kinds of things and oh, they've turned into some amazing, amazing things.
Speaker 1:So, yeah, and I think too it's. Those are interesting moments too that we've had. I mean, my daughter still she's just about three Cognitively. Last time she was tested, and a couple months back, what she was testing out. As a four year old she's very intelligent, very aware of what's going on, and but I think she's deeply aware of how much she gets left out of situations because of her circumstance. So I remember the very first time that she was included in a board game with her cousins oh my gosh, you would have thought that she had just won the jackpot.
Speaker 2:Like I got my own piece.
Speaker 1:You know, she's like shaking with the excitement of just the joy of like being present and being included, and like my mother and father will take my oldest, sometimes just like in between places, and she gets to ride in the car. And of course, you know my youngest has to ride with us and so the first time she was included in that she just sat in the backseat. My mom told me just just shaking, like I got included for the first time. I got to go on the car ride with my big sissy, you know, so just, and then even my oldest getting to really participate in that like excitement of something just so simple. You know, I think, what kids with disabilities do they just were reset you to the simple. Oh, it's so true.
Speaker 2:And it is. You don't realize how much is taken for granted. How much you know, simple putting shoes on can be such a struggle. You know we just ours. Son is 13 and haircuts have been so hard growing up.
Speaker 2:But this last, just a couple of days ago, his dad, he just said I need a haircut. He kept saying I need a haircut, I need a haircut, I need a haircut. And so dad sat him down and got the razor. We talked about, you know, it's going to make a buzzing sound. You're going to need to just stay as still as you can and we did one of those motion you know fast videos and it was so cool, like he, it was the best haircut he's ever had and I was like, wow, I was so glad we documented this.
Speaker 2:Yeah, I'm so glad that everybody got to be a part of it. You know sister was there to help and you know pat him or do whatever was necessary when, but he just was a trooper and got it done and things that we take for granted, you know doing. Listening to buzzers or yeah, it's a.
Speaker 1:It's a reset to what what really life is and is to that simplistic. And you know, my, my youngest, has a lot of gross motor, fine motor dysfunctions and concerns. And you know, I remember just that development period in which everybody's like, hey, you know, we've got milestone of of this and this and this, like sitting up and crawling and walking, when you don't realize that there's actually like a good 50 to 60 to 100 sometimes little mini development milestones that you just miss when your kid is just typical, yeah, where I just didn't realize there's just this massive opening of awareness of of how much goes into something so typical as, hey, my baby can sit up, yeah, my baby can hold their head up, you know. Or my baby can crawl, my baby can, whatever. And yeah, there's just a really grounding force that comes from, I think, our children that have.
Speaker 2:We cherish those like really small moments like a haircut, right, exactly how do you feel you've been able to? And now you're she's three, so she's pretty little. You haven't been on this journey as long as you know some other families and I can't wait to share some wonderful friends with you that I think will help Just really bring, you know, peace and stuff to your journey. So, so exciting when that happens. But what? How much of a community have you found to be supportive for you at this time?
Speaker 1:So this is something that's still building. I think one of the really early stage it's with all of us, right when we were becoming advocates for our children, when we realized that things are sort of taking a left turn that we didn't really expect, which even atypical like families with atypical children do this to right there it's new, you just don't know. I started getting into online communities so that I could have an awareness. You know, cp is the largest disability group in the world. They have some pretty solid digital communities out there. I live in the Nashville area. There's actually quite a few communities here which I haven't really gotten to get connected with as much, but even those digital space I had so many questions, you know she was.
Speaker 1:G tube fed, I had a lot of safe swallow. Those communities really really were very transformative to my mental health, you know, a place to sort of bounce ideas off of. You know it's not exact science, not every kid's the same, but hey, we can try to get in this together and glean knowledge from each other. It's been kind of neat because it's a global community and so I've actually helped parents in the same way I've helped with other issues. I was able to actually connect with families in other countries, yeah, and kind of be a window into the West for them and vice versa. You know, and it's that's been a blessing to you.
Speaker 2:So yeah, isn't that the truth? I always you know, and my listeners are going to be like are you going to repeat this again? So such great advice, right? I think it's so important that when we're on these journeys and we have these communities that we can lean on and into, it's so important to find three pieces of the community Somebody at the beginning process that you can mentor and say, hey, take my hand, you're not alone, we can, I can show you the steps I took, that that helped, and here, like you said, are thousands of other people's words that can, might be able to give you some ideas as well. And then somebody in your same spot, somebody with somebody same age children that might be for us puberty, you know, and ideas and what that might look like and how we can better support all of the needs that are coming. And then, of course, someone in the future, someone who's been through the transition. Oh, yeah.
Speaker 2:Someone who can really say hey, it's changed over the years. There's a lot more out there now, but you know, these are some things that helped us going through transitions and it's so beautiful to find that kind of layered community to be able to support you and you support them, and oh, it's just comes full circle.
Speaker 1:Yeah, I really agree with that. The learning curve is really steep. At the beginning it's overwhelming, but I've noticed to. And the CP community. Obviously every community is different, you know, but the CP doesn't get worse, but it affects the body differently with different ages and the things I didn't know that you know. The doctors just tell you this, right, and it's the answered question for where you are right now in the moment.
Speaker 1:But I like being able to plan. I'm like a planner, Like obviously I can plan my again, my daughter's, hers is an accident. You know, the birthing process went horribly wrong. She was totally normal before. So it's not even like we had a medical condition, that that the doctors could tell before. It was just very much like everything's fine, Everything's not fine.
Speaker 1:And this idea that I was just supposed to be an advocate for this child, that that I mean I didn't know any of the radial conditions, that I didn't know that names like some of the, some of the adjacent conditions to CP, that they have names too, Like I didn't know that. So one of the big concerns we has, like what does the future look like? Which every children that I know, with your kids, probably the same thing what does the future look like? So getting involved in those communities to really had a big impact in my ability to cope with the unknowns, because there were so many unknowns in the first part and now it'll be like that forever. I know that. But being able to have a sense of peace through those communities, that could tell me like hey, my kids at this point in this development, or I'm an adult or I'm like, I'm 60 or 70 years old, and this is what I'm experiencing now, and it's not their job to give me peace.
Speaker 1:I understand that they're just because they wanna be with other people that are going through the same things, but as a parent, I don't know what it feels like to be her. I don't, you know, I'm just at the point and the journey that she can't speak for herself and she can't help herself as much. But eventually, like I can maybe help her into these communities that other people that are experiencing something similar to I go back to my mom. She always said that it's really important to have mentorship, you know, and as a parent, you want to pass your child on to others that can mentor them, and I want that for my daughter and to build these communities. Now I feel like better about preparing her for those future moments in which I don't know what she's going through you know.
Speaker 2:Yeah, definitely yeah, and it's going to just get you know. You're gonna have more information, which is gonna make it both easier and harder. Come to the future, when it comes to school and all the other, you know things that happen in our little lives, our little adolescence lives, and it's going to be such a journey. So, I mean, I really am excited and hopeful for you guys to have just a positive journey. And what is the future looking like for you now, or what projects or what kind of things are you going to be doing in the future?
Speaker 1:Well, just with my little one, or just in general.
Speaker 2:Yeah, kind of in general. I mean with you, you don't even know, with the little right, the little one's gonna be, like you said, day by day sometimes.
Speaker 1:Well, mostly you know, if it's motherhood, right, it's just taking the future as this for next step in front of you. But I think that applies to really anything and everything. The future for me is really just sinking into the beauty that is life and those small moments and letting that feed into the nonprofit that I founded around human dignity, and part of our mission is actually in the disability community, really speaking life into that community and trying our best to serve that community in a way that honors them and seeing them right where they are, just like everyone.
Speaker 2:And tell us a name. What is the name of the nonprofit?
Speaker 1:The name of our organization is Dignity Defense Institute and it's called dignitydefenseorg if you want to look us up Really. Like this is the rubber meets, the road year for our organization that I'm so excited about. One of the big things we're doing is actually developing a disability committee that brings the people that are in the disability community for themselves but also work very closely to identify sort of the shortcomings and service within the disability community. Again, I sort of gotten thrown into that, obviously as a mom and I realized, like you leave the hospital and nobody tells you anything, you just you know, like you don't know what benefits are out there, you don't know what you should be doing for your mental health, like, just like so many questions. So a big part of that committee's purpose is to sort of address those question marks, say, okay, what are we seeing that needs to be fixed and how do we feel like organizationally we can fix them.
Speaker 1:And one of the big things we're wanting to do is we want to identify individuals and we know with families with disabilities we needs aren't made in a vacuum, right, you don't just have one at a time, you have many at a time and they're always changing. And one of the big missional components is that exactly, which is to say, okay, what are your needs, and then what are the organizations out here that are serving in those capacities and then facilitating the connection, and then constantly walking out life with that individual to make sure that you know if they're a parent or if they're an individual with disabilities, that they could get the assistance that they need. To make sure, because there's a ton of organizations out there that genuinely want to help. But I've worked with a ton of nonprofits and they struggle to find the people that they want to serve, and so we wanted to be that bridge organization to make sure that people were actually not out there just struggling, just like on their own, not knowing.
Speaker 1:And again, like every single time that your kid hits a new milestone, their needs change and it's incredibly frustrating to be like, okay, well, all right, we're in a new spot now. So what do we do? Like, because you have to go back out and reassess your needs and find those new spaces. So you know, and that's not the only topic we address we call them symptom industries. We deal with dignity itself, but there are different issues within our culture that are around dignity, that are affected within our culture, and the disability community is just one of them, because we really care about the whole human person and we care about the whole human experience. So, and just really getting down to that foundation of you are valuable.
Speaker 2:Oh, you're so valuable that we would like to come find you and try to live life and hold your hand through these hard times, because we all know what it feels like to feel alone you know absolutely, and I'm so glad that now, like you said, we're at a time in society and technology that we can use social media and social access to try to help find those audiences and right.
Speaker 1:Yeah, and there's no reason why we shouldn't, you know like? And again, I think maybe this perspective came from just dealing with so many different issues out there. I mean, I've worked on many topics and there was just this overwhelming hurt that I had over the years, like I wasn't doing enough. I was helping the one individual, but I wasn't really changing the circumstance for the other individuals that are also affected. It's kind of like I'd liken it to a dam that's got a leak in it. We're just like plugging it with our Well, it breaks and you're like ah.
Speaker 1:So you know, I just felt very much led to. We need to be foundational, we need to get four or five steps down that conversation before we ever get to the needs of the person we need to address. Well, why is it that people's needs aren't being met? It's because we don't view each other as inherently valuable. Our society puts conditions on our value.
Speaker 1:Do you walk, Do you talk? Are you able to participate in a normal way? They may not even mean to be that way. They may think that, hey, I befriended somebody with a disability and good for me. No, you have to see them as a person. Yeah, yeah, Maybe you react and interact with that person differently, but don't you do with any other person? You have to make accommodations for the way that they live because they're a little bit in a different space than you. But it doesn't mean that you shouldn't. It means that you shouldn't be like a pity. That's the way I look at it. Is that you know this with your kids. You just want your kids to be able to play and not have to explain every time?
Speaker 2:Isn't that the truth? No, I agree, and there's such a fine line when it comes to ver not verbal being able to see a disability versus invisible disability in the sense of that same explaining. I remember years going trick or treating in our son asking, oh, what's your birthday, what's your favorite element, what's your favorite color? And the people just freaked out and they're just like just take the candy and just so short with them and everything. And it wasn't until one year. I finally said, ok, I'm going to let people know so that they can be kind to him and slow down and let him have this space Like every other kid wants to have it. He just wants to enjoy it a little differently. He doesn't care about the candy, he really cares about what color car you like to have and now those intimate things that he loves. And so I put a little sticker that said please be patient, I have autism.
Speaker 2:And the neighborhood changed, they changed and even today some of the neighbors remember him from. That's been quite a few years that I've done the same thing now and it's just so beautiful when they have that little bit of information Again. It changes those fears into understanding.
Speaker 1:And I've thought about that so often because my cosset, my youngest, is in a walker. It's automatically. Everybody knows there's something a little bit amiss. But so little kids they're like why the wheels? Like, you have a solid question Because I don't have wheels. Why does she have wheels? We're fine with those. We want those questions to be asked, and so the parents being like shh.
Speaker 1:That's a very solid question for a small child. The only things that we have a hard time explaining is sometimes when they start asking her questions. She understands and she speaks ASL, but they don't. So she hears what you're saying and she understands you, but she doesn't have words to express it. We've had to do that quite often when, again, she understands what's happening and I know that that's deeply frustrating to her. There's lots of screaming and yelling that's out of frustration for her. So trying to learn how to navigate those moments that maybe one day she will talk and this will be just fine. She's already starting to verbally express things, but in the meantime, how do we sort of address that, as she's sort of going through the stage of which she sees everybody is normal and she just doesn't know how to deal with that. So, as her parent just trying to walk her through that and help other people around us understand too, like she hears you, asks her a question and I can always translate to you.
Speaker 2:It's so powerful, those children and the perspectives that they bring for us and for others, that it's forced on them. But it's good for them to have, like you said, to be able to see the value that each person holds as themselves. So it's been so wonderful to get to know you and I hope we can stay in touch and really stay connected and follow one another's journeys. Absolutely, before we go, tell us again the name of the nonprofit, the website where everybody can go to support you.
Speaker 1:Yeah, sure, again, it's dignitydefenseorg, and I also have a podcast myself. It's called Pro Dignity. No Doubt, Now we take a little bit different angle than this particular show. We talk about really any hard the individual and their story of struggle and what they're doing to make that and transform it into deep purpose, which I know is very much what your audience is all about too, as advocates for our family and for ourselves as well. So I would love to have you guys on our website and or even as a listener as well.
Speaker 2:I would love that Absolutely. I'm excited to check it out as well. So thank you so much for sharing that with us. It's been a really pleasure talking to you today and I hope that for the both of us, we can keep making these changes, helping our fellow communities and building those communities up for ourselves and our family and the community itself. So thank you so much for being here today. Thanks for having me.
Speaker 1:Appreciate it.
