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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 293-Balancing Family Life and Advocacy Efforts with Inclusive Dad Podcast Host Aaron DeVries
Aaron DeVries, a devoted advocate for disability inclusion, brings his heartfelt journey to our conversation, inspired by his daughter's battles with epilepsy and cerebral palsy. As a father navigating a predominantly female advocacy space, Aaron shares the importance of belonging over merely fitting in, urging more fathers to lend their voices to the cause. We explore how personal experiences, including his upbringing, have shaped Aaron's advocacy approach, encouraging others to question societal norms and embrace emotional sensitivity.
Facing the daunting transition from pediatric to adult care, Aaron offers invaluable insights for parents of children with disabilities. We discuss the challenges of managing medical and educational environments that change with age, underscoring the need for proactive advocacy and early planning. Through Aaron's experiences, we learn the importance of balancing family life with therapy demands, and recognizing the human side of medical professionals to ensure the best care for children.
Aaron's Inclusive Dad Podcast becomes a beacon for promoting a more inclusive world through honest conversations and small actions. We delve into the unexpected opportunities that arise from following one's passion, like starting a podcast, and the empowerment it brings to those who share their stories. Wrapping up with a lighthearted weather chat between Minnesota and Utah, we find appreciation for the changing seasons, much like the transformative change in attitudes towards inclusion that Aaron champions.
Welcome to the SJ Child 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'm your host, sj Childs, and today, oh, I guess we won't be joining you shortly. We are here now. Hello, take the banner down. We are here with Aaron, and is it DeVries? Devries. Devries it's so nice to meet you and have you here today. I'm really looking forward to this conversation. Tell us a little bit about yourself, introduction, and what brings you here today.
Speaker 2:Yeah, so my name is Aaron DeVries. I live in Minnesota. I have all my life. Today it's pretty nice out. I got down to 25 earlier this week so I'm already feeling some cold weather here, but I've lived here all my life. I have two children. My son is, let's see, 23. My daughter just turned 22. Wow, she was diagnosed at three months old with epilepsy and then cerebral palsy after that, so got introduced to the disability world through my daughter and then learned about inclusion later on and been fighting for her to be included since that point in time and I'm just wanting to spread the word about inclusion. I've given two TEDx talks on inclusion. I started my own podcast a couple months ago talking with people about inclusion. So I have inclusion tattooed on my arm, so I'm kind of all in on inclusion.
Speaker 1:I love it. I love it. You're the inclusion dad, just like the logo says, and so what a wonderful way to represent and it sometimes is for my story as well my son fueled our passions and our desires to help educate and bring change in our society for the purpose of being included. You know, I heard on this podcast the other day somebody saying the difference between belonging and fitting in, and when you belong, you don't have to fit in, you don't have to try to fit in. When you belong, you're just a part of it. When you fit in, then you're masking, then you're having to wear the certain clothes or you're having to speak a certain way, or I just thought that was. I hadn't really looked at it that way and thought what a wonderful perspective and great way to teach, especially kids. You know that you want to find where you belong, where you can be yourself and let your masks down, and things like that. How hard was it, as a dad, to find a sense of community and a sense of belonging?
Speaker 2:I mean as a dad. I guess, if I'm being honest, I haven't, I mean I don't have a pretty like a dad community around me. Honestly, it's mostly even still a lot of. Any meeting I go to, it's usually, I mean, if there's other guys there. It's kind of surprising to me. So, like the disability world, at least where I'm at, it's heavily female, so it's which is. I mean I'm, I'm comfortable in that setting. It's just interesting how heavily female in my experience it's been. But as far as I mean, I have a sense of community with, you know, other parents, probably mostly moms, but there are some dads who I hang out with that you know have children with disabilities or on IEPs, so I do get that community from them as well.
Speaker 1:Great. It is tricky, isn't it? And it can be so isolating, and especially when every human goes into having children with, oh we're going to do this and we're going to do that, and you have ideas in your head of what you might do and, um, it's never like anyone's fault or, you know, guilt or anything like that, but the ideas are still not being able to move forward and you have to let those go, and that can be tricky. But creating, like your own communities and things I mean that can be really hard too, but it is necessary sometimes when you find yourself in these types of things.
Speaker 1:So, just like you're doing with your podcast, I love that idea and I think it's really important to have the dad representation and I hear what you're saying how there's so many you know moms out there being the advocates and being the fighters. And it's not to say that the dads aren't. They're just not as vocal or open about it, and we'd love to see that. We'd love to see the idea of being an advocate change. What do you think is maybe like, what is a drawback that some of these guys might have, being a guy yourself, to be able to say why aren't enough people dads coming to the tables?
Speaker 2:um, I mean, I don't. That's a great question, I, and if I think to myself, how did I, how did I get? What about me, led me down this advocacy path? I'm not really sure either. I mean my dad growing up we went to church, every time the doors open, and my dad would always. If the preacher was up there saying something during a sermon, my dad that week would go and you know, look for himself, see what his view on the Bible was or what he thought it said, and then, you know, bring it up.
Speaker 2:So I kind of have that role model of you know not just taking everything at face value, maybe questioning things. That thing, I'm not sure if that, you know, comes into it. It's just I also get from my mom. I mean, if she watches a Hallmark movie she's crying, and I have similar, not Hallmark movies because I don't watch them, but if it's something where it's, you know, more emotional, I'll tear up. So maybe just DNA, that kind of stuff.
Speaker 2:For what I was around, where my strengths lie, which I feel like in a mom-dad-child relationship, you kind of have to whoever is best at which piece of the you know responsibility, maybe have them be able to do that I'm not saying that I'm better than my daughter's mom in the situation. It's just something that I like digging into, like spending time on, and early on in my journey I realized that I mean she was having 90 minute grand mal seizures. So I'm like this I'm not going to work 60, 80 hours a week, never be home. I mean I could. I don't want to be doing that Something happens and I'm not able to spend time with her and I'm not able to spend time with her.
Speaker 2:So early on I kind of got over the misconception that I should be working all the time as a dad and just doing that. So maybe that helped. I'm not exactly sure, but I feel like maybe it's just the roles that we still have in society and dads versus moms. I guess I haven't come with a good answer, it's just. I mean it's kind of interesting though.
Speaker 1:Well, it seems to me like your parents probably instilled um, a really great sense of emotional intelligence in you for one, which gave you the um I, you know, the ideation that you could do more for your child than other people with society. Right, it's just crazy Really. When you're in the disability world in any way, you very, very quickly realize that society isn't a lifestyle that your family lives by and that all that goes to the wayside. I'll tell you, I used to joke that it was like my house had round walls instead of corners. That's how different it was. Over here, nothing even looked like a real house. I mean, of course it is just a regular house. But the inside and the people that exist in it, they exist in their own dimension of the world, not in society's idea of what it is. And giving space to that and making that environment your number one intention is so important for the development of that child, of that relationship.
Speaker 1:I love what you said about being responsible and accountable, kind of, for the role that you provide, because, yeah, I had careers. I could have made great money and kept working, but my husband also had a fine career. That could be fine. I wanted to stay home. I always wanted to be a mom. We both knew it'd be great, you know, for for me to do that and being responsible and accountable to say, okay, well, I don't, I'm going to have to forfeit those careers, those ideas to stay at home and create this environment. You go to work. I trust this. You know part of your plan, of your role, so I think that's really smart. Parenting or co-parenting, if that's what you're doing, yeah for sure. Yeah, I love that. What are your plans for what? Do you see that kind of needs to change? Are there any? I know that's that's a big loaded question, but change, are there any?
Speaker 2:I know that's, that's a big loaded question, but in regards to what just do you?
Speaker 1:think I and I guess that's a really good question to ask too, in regards to what so they're. They're adults now, so let's go back to when they were kids and like maybe when she was getting medical care as a child. Has that changed till now as far as, like, the amount of support you get from medical providers, or is it worse and harder with insurance?
Speaker 2:I mean early on, she, she, I mean I feel like okay, I mean I feel like definitely when she was younger, especially medical care, she, I mean I feel like it definitely is different, because you go from like the pediatric age stuff to the adult and then it does look different. So I feel like it's definitely different. The support I feel is still there. Oh good, we have, I mean Minnesota, there's a hospital, medical facility called Gillette Children's Hospital, and then they have like a transitioning to adults and they're I'm one of the leading, they're pretty, pretty well known for like cerebral palsy, those types of things. So it's proportion in that aspect. So they have a pretty good program.
Speaker 2:Um, the school stuff to me is more scary because like, yeah, we mean I didn't know anything about disability, um, anything about special education before my daughter. So you know not knowing anything, you just go along with what they tell you and then you realize like this isn't. I don't think they're withholding stuff from me on purpose, but just not sharing everything that's out there. So you learn. And then, um, we wanted to her to be fully included after she had already gone down the path of, you know, like a separate special education room.
Speaker 2:So we had that um battle pretty much her whole school career, getting her more and more included. But even that, how not much fun it was like. Now it's, you know she gets to this age she ages out of that school system and then the supports in place for um for her when she's an adult are much less available than in the school setting. So there's definitely um some getting used to that or how do you navigate that part um and looking back, I mean we should have been thinking about it more diligently earlier, planning better. But I mean you can only do what you can do.
Speaker 2:I mean there's only so many hours you need to balance as a family in your life. I mean, what's the most important? I don't want to work all day, get done, take care of therapies and all this other stuff and then sleep and not spend time with each other.
Speaker 1:So you have to balance this stuff, but definitely for me.
Speaker 2:Early on I was like I said I didn't know anything. I also had a um thought that you know doctors, teachers or their positions. I couldn't question them. Um, like they, like I didn't have I'm not sure where it comes from, but didn't have the knowledge to question what they were doing.
Speaker 2:Until things would happen where Dr A would treat a seizure this way, dr B in my mind the same thing was happening would treat it differently. And I was like, yep, they are human, just like me. They went to school, they made I mean, they're just making guesses or the best judgment they can, given the information they have. And then I was like, okay, well, I mean it's okay, I'm her parent, if something doesn't feel right, I'm going to question it. So once that happened, it definitely opened my eyes, opened doors, started questioning Doctors don't not all doctors like it when you question them, but I mean I'm her dad, so if I see something that doesn't make sense, I'm going to ask a question. I mean that's my, I feel it's my job and role. So definitely, once I got over that thought or you know that, whatever that was then definitely changed things for me, then definitely changed things for me.
Speaker 1:I can completely agree with you and I think that when we, as parents, are curious I think it's a great way to put it Like you need to stay curious. You need to be constantly asking is this therapy helping? Is it my child growing? Is it restricting them? Is it? You know all types of things medical providers, therapies, counselors. There's just so many different modalities and resources that we use and services, and there's not just one fits all. There's not one fits all for anyone. Naturally, as you're probably very aware of, there's several at a time and it can be so overwhelming to be and, like you said, you go in. You're, I think, like you said, maybe taught to trust what a professional says and that's what you believe and that's what you go off of. And I can hear my dad saying you know right now, oh well, if the doctor says so.
Speaker 1:You know, kind of and I'm like, well, but and I have a medical paralegal background and so I was constantly questioning things that were coming onto my desk. That was my job, and so I see how that is. It's tricky for people until they're taught, or until they learn how to stand up and do that for themselves.
Speaker 2:Yeah, and the story that brought that to head for me was she was having like a 90-minute grand mal seizure. She's in the ER. They tried all the I mean, they've tried the normal rescue meds and then they're going for something else which was in a syringe. So they brought it in and they the doctor said you know, we're going to put this in the line. We got to like slowly put it in over five minutes or it's going to burn her veins. So they did that way. Way. The next time, same thing. They took it, they brought the syringe in, stuck it in the line, went shh, and I was like whoa, I'm like what just happened? They're like what? I'm like the last time she was here in the same situation, the doctor had them put it in over five minutes. Now you just shot it in the line in one shot. So either last time you took too long or this time you burned her veins and they're like they just were not happy with me. But I'm like, hold on. I mean something was different. So what's going on? So yeah, did they answer that? I don't think they answered it in the moment.
Speaker 2:We ended up having to like meet with the head of the ER and got like a protocol in place to like meet with the head of the ER and got like a protocol in place. So the inner file there was like a protocol everybody would follow. So but then you're also, your parents are in, she's in the ER, the seizures aren't stopping. I mean, how much, how much questions do I want to ask because I don't want them to, you know, get upset or take their time away from trying to, you know, help you get better. So then you're like in that position Do I bring it up now? Do I bring it up later? Like what's the best time to say something?
Speaker 1:Oh my gosh, I can't imagine what a like resilient daughter and father, brother, sister, mother, whatever, whoever all the pieces are. You guys are just so resilient to get, to have to go through these things over and over again and and to be able to share the stories and the education. Tell us a little bit more about the inclusion dad podcast and what you talk about, the kind of guests you have on things like that, or, if you don't, if you just do yourself. Yeah.
Speaker 2:Um, so what I've been doing is I just I've gotten only two of them where I've done short like episodes by myself talking about stuff. Otherwise it's getting parents of children with disabilities on, or people with disabilities, and it's just like a short conversation. I just want to talk about inclusion. So I always ask my guests like what's your definition of inclusion? About inclusion, so I always ask my guests like what's your definition of inclusion? And then another question I always ask is what is something that we can do today to make the world more inclusive and that one comes more from?
Speaker 2:For a long time, I mean, I look into the laws. The law says, in my opinion, they should start off being included and then, if that doesn't work, you know they can't with with supports in the gen ed class. If that doesn't work, you know they can't with with supports in the gen ed class. If that doesn't work, you know maybe back off and move to a different setting. But so that's kind of my view of it. But just me alone saying that to my daughter's school didn't make them want to do it, and then I would get like upset, like this is the law, this is what you should be doing. Why aren't you you? So I'm trying to shift, um you know, my thought process or my energy more into like, how can I make the world more inclusive daily, by small things, um, spread that message so everybody's more people are doing it and then I'm hoping that, or I know that will, you know, make the world more inclusive overall. So it's more of like an energy where do I, where do I want to, you know, put my energy towards?
Speaker 2:So that's um, what I want to do just with the podcast is just talk about inclusion, get people's stories out there. Um, a lot of I mean, um, my, I'm divorced and my partner, um, we've been together, I think almost three years and um, she didn't have this much exposure exposure to somebody with a disability before we got together. So, just you know, she said several times about, I mean about ADA or different things, like I mean there's laws in place so I thought everything was okay, you know, fine, there's no issues. But just you raise sharing my story, raising, sharing other people's stories, just to make people aware that especially students like my daughter, who's considered she qualifies for special education under multiple categories, like in those situations, the number of kids in the gen ed setting, with those. You know classifications is pretty low numbers. So just getting that awareness out and, you know, trying to get them more included.
Speaker 1:Yeah, absolutely. Well, I love this. Let's turn your questions around on you. What is your definition of inclusion?
Speaker 2:Oh man, my girlfriend asked me that too and I'm like I need to figure this out.
Speaker 2:So I mean my definition of inclusion is just, I mean to me it's kind of like you talked about belonging or I think. I mean I'm old enough to remember the show Cheers, where you just go, everybody knows your name and they're glad you came, yeah, that where you just go someplace and you don't have to, you know, for us you don't have to make sure it's wheelchair accessible, you don't have to, you know this isn't accessible. So you don't feel like you sure it's accessible, like I said, and just go and enjoy it and not have to think about all the inaccessibility and that type of thing. And even being invited. Just if there's a party or if there's a family thing and they're having a birthday party, well I mean, if it's not at a place where my daughter with a wheelchair can get into, then I mean you makes you feel like you don't want us to participate. So just, you know, making sure your events are accessible for people in wheelchairs or other mobility needs or sensory needs and stuff like that.
Speaker 1:So important and that's a. It's a really big question how can you change the world? And you kind of answered it already and as far as, like you know, you're trying to make changes yourself and I think that that's the best we can do is is make changes ourselves to, in the way we model our behavior towards all humans. You know, I hope that my children see that some of my best friends out in the world are the baggers with Down syndrome and the people at the gas station that are, you know, taking the garbages out, and I'm like, thank you, if you didn't do this, oh my gosh, what would be happening right now there, would you know? Like your, every job, every person's piece that they give to society and productivity is value, and not enough people give value and see value and offer that. You know, handout or whatever, not even like that. I don't mean it like that, but, like you know, they don't see them and I love to do that.
Speaker 1:I love to just acknowledge people and say thank you to them and I hope that my kids see that she has compassion, especially for those that she sees may be underserved, and I think that it comes so much like easier almost for a sibling and she is autistic as well as her brother, who is profoundly autistic and has many more support needs than her. So she can see that challenge, if you will, and in where we need to give supports. But, just like you said, we, we we'd love to go anywhere and not have to be double looked at three or four times to see why somebody in our family might be acting differently than everyone else. You know, or it's, yeah, it's time for change in, in perspective, like perception for others, not just like they need to take action and they need to take mental like actions to start stop treating people badly.
Speaker 1:I don't know, yeah for sure it's crazy yeah what kind of things um do you have that you're working on in the future, any programs or ideas or things that you have coming up?
Speaker 2:um, right now there isn't anything really else in the pipeline. I just kind of started the podcast a couple months ago. It just felt like the universe was telling me I should. So I did that and now just went through that door, so just kind of seeing where it goes. I mean, it's just been really great meeting people such as yourself, um, sharing conversations, um you know that piece, I'm not exactly sure where it's gonna end up it. Just right now this is the right place to be, so we'll see where it goes. Um, there's just so many. Part of my thing is I see so many things that could, you could work on or need to be worked on, and then you get kind of overwhelmed with where's the best place to spend my energy. So right now it's the podcast, for sure.
Speaker 1:Yeah Well, I think you're doing the right thing and and congratulations on starting it, and I really can't wait to see how wonderful it is in the future. I'd love to check back in with you and see how it's been going and, of course, there's so many wonderful people I'd love to put you in touch with that. I think you would find value in, and vice versa, so that'll be fantastic. It's one of my favorite parts really about podcasting is the connections that you can make, um some without ever even knowing that they will be a part of your life or that it will have an effect on them. Um, so it's really. It's really interesting the opportunities that can come out of it, out of being passionate about your, that, your drive, whatever drives you.
Speaker 2:So there's been a couple I mean more than once, probably close to five now, just in the short time I've been doing it already where just I've had guests on or been on somebody's show and they're like, just by you sharing your story, it's helped me be able to share my story. So stuff like that where you know you're doing the right thing or stuff like that, so it's pretty fun.
Speaker 1:That's the best. Yeah, I think that I do like autistic events where I host autistics to come and speak around the world and some opportunities that come out of those things. Oh my gosh, my heart, it just, it just melts all over the place because you know they'll call and they'll be like whoa. I got in touch with this employer that you interviewed on, you know had in this event, and now I'm starting this job and I'm going to have the you know the income I deserve and I'm being you know. There's just there's so much to be gained from coming together and really what we're doing from coming together and really what we're doing creating a sense of belonging and inclusion.
Speaker 1:So please join us, please join us and join the. The light that we're trying to spread and, you know, show onto everyone. So, yeah, wonderful work that you're doing. And, before we go, tell everyone where they can go to find you and look for the podcast, have a website, all that good stuff.
Speaker 2:Sure, so my website is theinclusivedadcom. Has all my links to my socials on there, and then the podcast links are on there. It's on podcasts is on Apple all the big platforms, just the inclusive dad. If you look that up, it's on there. It's on podcast is on um apple all the big platforms, just the inclusive dad. If you look that up, it's on there.
Speaker 1:So I misspelled it. I'm like, yeah, that might happen once in a while. Right, the inclusive dadcom. I think I got it that time. Yeah, bam perfect, there you. Oh, it's been such a pleasure and such a great conversation with you today.
Speaker 1:I hope we can stay in touch and you know, catch up with one another and share guests and all of those things, because it's such a wonderful way to bring education and share, because, like you said, so many people can gain things from conversations with others and I surely love that about podcasting as well.
Speaker 2:Yeah. Thank you so much for having me.
Speaker 1:Yeah, it's been a great conversation. Thank you so much. And yeah, it's, we're heading into. Where are you at? Oh, you said Minnesota and it's got. You said it got down to 25 this morning. We also got our first snow last night. I'm in utah and our mountains are all covered in their first light snow and, yes, we had to turn our heaters up a little bit this morning you can keep the snow for now yeah, yeah right.
Speaker 1:Oh, thanks, I'd like for it to get back to 70. Actually, that would be nice to finish fallout, but no, it's great. Well, thank you so much for your time and I look forward to staying in touch. Yes.
