Reflecting on two decades of marriage is no small feat, especially when both partners are on the autism spectrum. As we celebrate our 250th show, my husband Dustin and I open up about our journey—how we've navigated the nuances of our own neurodiversity while raising three unique children. From the daunting early days following our son's diagnosis to the daily victories that often go unnoticed, we share our stories with honesty and hope. It's a conversation rich with lessons on patience, the power of research, and the beauty of balancing contrasting parenting styles to foster a nurturing environment for our kids.
Have you ever pondered the true nature of empathy within the autistic experience? Here, we tackle the stereotypes head-on, discussing how Dustin and I have learned to harness our empathetic abilities and debunking the myth that autism equates to a lack of empathy. It's a candid exploration of the challenges and triumphs that come with raising a child on the spectrum, including the small, significant moments like mastering the art of deep breathing to overcome sensory overload. We also address the intricacies of 'masking', the protective façade many autistic individuals adopt to navigate a world that often misunderstands them.
As we round off this milestone episode, our hearts are full of gratitude for the voices that have joined us along this remarkable journey—the listeners, friends, and family who've woven their support into the fabric of the SJ Child Show. We promise to continue bringing enlightening discussions to the table, pushing boundaries, and embracing the continued growth of our family, whatever the future may hold. So here's to 250 episodes, the stories we've shared, and the many more to come. Join us in this ongoing adventure, and let's keep learning together.
Reflecting on two decades of marriage is no small feat, especially when both partners are on the autism spectrum. As we celebrate our 250th show, my husband Dustin and I open up about our journey—how we've navigated the nuances of our own neurodiversity while raising three unique children. From the daunting early days following our son's diagnosis to the daily victories that often go unnoticed, we share our stories with honesty and hope. It's a conversation rich with lessons on patience, the power of research, and the beauty of balancing contrasting parenting styles to foster a nurturing environment for our kids.
Have you ever pondered the true nature of empathy within the autistic experience? Here, we tackle the stereotypes head-on, discussing how Dustin and I have learned to harness our empathetic abilities and debunking the myth that autism equates to a lack of empathy. It's a candid exploration of the challenges and triumphs that come with raising a child on the spectrum, including the small, significant moments like mastering the art of deep breathing to overcome sensory overload. We also address the intricacies of 'masking', the protective façade many autistic individuals adopt to navigate a world that often misunderstands them.
As we round off this milestone episode, our hearts are full of gratitude for the voices that have joined us along this remarkable journey—the listeners, friends, and family who've woven their support into the fabric of the SJ Child Show. We promise to continue bringing enlightening discussions to the table, pushing boundaries, and embracing the continued growth of our family, whatever the future may hold. So here's to 250 episodes, the stories we've shared, and the many more to come. Join us in this ongoing adventure, and let's keep learning together.
Welcome to the SJ Child Show, where a little bit of knowledge can turn fear into understanding. Enjoy the show, hi, and thanks so much for joining the SJ Child Show. This is a really special episode, number 250. I often ask myself how did I even get there? But it's from all of you, from all of these amazing listeners, from all of the support from my family, friends, and tonight you're going to get a special glimpse into what that is like for me, because I have a great guest tonight. I guest today For those of you listening in the day. It's just.
Speaker 1:I wanted to jump on really quick and say how grateful I am to each and every one of you. Please feel free to reach out to me anytime, sjchildsorg, and you can email me straight from the website. I'd love to hear your comments, your questions. If you ever want me to cover any specific topics, please reach out. If you'd ever like to get in contact with anyone that I've previously interviewed, you're also welcome to reach out to me for that, but without anymore. Thank you so much for your support along the way and enjoy the 250th episode.
Speaker 3:Thanks so much for joining the SJ Child Show today. I'm really excited to talk tonight to somebody that you guys, I think, will find a very interesting story. This is someone who knows not only his own perspective of autism, but also being a parent and, most importantly, being a spouse to someone on the spectrum as well as being autistic himself. So I'm really excited to have my husband here with me doing this recording. I know that it's been several requests that he hasn't wanted to do, but he said, hey, maybe we should do this this time. So I'm really glad that he wants to be a part of it.
Speaker 2:So I would further do Thanks for having me, and I didn't say let's just do it. You wanted me for the 250th multiple times. You asked, so here we are.
Speaker 3:He always has the straight story. I might, you know, have a little bit of fluff to it, no, but it's really great because I think, with both of our perspectives and especially, what a lot of you don't know is that I get so many of my amazing ideas and so much of my drive, and everything has come from him and from his ideas for me and his support, and so I think that it's just going to be really great to be able to kind of hear both perspectives. So, you know, we kind of tried to talk a little bit about like what we were going to talk about and what this episode was going to be about, and we're going to just kind of go off the fly. But I think it'll mostly be about togetherness. I mean, this will be our 20th year together this year, 2024. And with that came mostly amazing and good, but some challenges along the way, and I think that maybe sharing with people how we got through those challenges could help some folks out.
Speaker 2:Absolutely. It's been great being a part of the behind the scenes, the being in front of the camera. I get really nervous and sweaty and I've had to cancel a few podcasts as the pressure has built. But I think that watching you grow through this process and wanting your voice to be louder and just really shining in every aspect, it's been amazing to watch this whole 30% of you that I didn't know existed.
Speaker 3:And it all came because we have that support for one another and we can really share with people maybe how to build better relationships, not only with each other but with their kids. Because, as you guys have heard me say in a lot of episodes before and even if you're new listening today we have three kids together a 24 year old, 14 and a 12 year old, and that is a big span of parenting that we have been doing.
Speaker 2:Yes, it is, and the first kid. We just did what we knew and that was drawing off of our parents' parenting, which didn't work out so well for us and I don't know why we thought it would work out well for them, but a lot of principal parenting and punishment and cause and effect and unfortunately it caused harm to the first. But it really helped us understand what to do this time and I don't think we're doing perfect, but I feel like we're doing better.
Speaker 3:Yeah, yeah, and when you know right, you do better. When you know, you do better Exactly, and you know. For those of you who are listening, I think the best place to start is just kind of a simple introduction. So, Dustin, please introduce yourself and tell them a little bit about yourself, and you know where you came from, basically.
Speaker 2:I grew up in the system. At about age 10, I started getting a lot of felonies and misdemeanors and just was in and out of group homes for six years of my adolescence. So a lot of my at home parenting was disciplined and disciplined and hang on therapists throughout the entire process. So I kind of approach a lot of situations with I feel, and how can we use rather than reacting?
Speaker 3:Great skills that you picked up.
Speaker 2:It really has proved valuable in parenting you never really know what you're going to get with our kids from day to day and being able to be flexible and patient and understanding and definitely think all of the therapists, because the impulse and emotional control was off the charts for me as a kid, which led me to juvenile prison at age 17. And I kind of grew up in the year or 16 months I was there and got out with the idea I needed to get pregnant and married and that's how the first ex-wife and child happened, because I find myself to be very logical. But it just was a relationship that wasn't going anywhere and I think just in what they taught me in the American dream and locker, get out, get a job, get a family That'll keep you out of trouble. And it did. It did serve its purpose in that way. But I guess she was four and a half five when we met.
Speaker 2:I had multiple girlfriends and usually two at a time until I met Sarah. Even then I suppose for a while we were both a little promiscuous and seeing multiple people, but from date night one we knew that was it. I think a couple months in we talked to do we want. What does our idea of success look like? I mean, we're very early, boyfriend, girlfriend, no seriousness but we both wanted memories more than a boat or an RV or a house and a career. So I think focusing and the way I worded it was let's make sure our kids don't grow up to hate us. That was pretty much what started our let's spend extra money on vacations or things of that nature Really changed. I think what we saw is important. Yeah, a lot of people around us thought maybe we needed matching couches and furniture in order to be happy. We've lived in Ireland, for sure.
Speaker 1:Yeah, I'm sorry.
Speaker 2:Sorry, my voice is squeaky. I'm nervous at this stuff. It's a little bit Trying to dredge up my past life, but I would say in the 20 years that you and I have been together, it feels like we've got 15 past lives and how much we've changed. Sarah doesn't talk a lot about things, but we're moving. Fast food 12, 13 years ago, when that wasn't as popular an idea, and to try to feed yourself organic and gluten free.
Speaker 2:It was a struggle that we needed just to again part of the memories of what's important yeah, being around for our kids has been.
Speaker 3:Yeah definitely Sorry to play it's fantastic because I think that really, ultimately, the decisions that we made, we made together and we chose to do them together and not, you know, waiver from that and bury from that. So it made such a huge difference. And now you know we are going to be grandparents.
Speaker 2:Yeah. And so exciting.
Speaker 3:We're thrilled about that and it also gives us a whole new life of memories to make together and with our family. And so it's just such a whirlwind when you can spend decades with a person and learn so many lessons and see the way that so many people grow and grow yourself, and when you can be like a really good friend to your partner as well as you know, trustworthy and loyal and all of the good things that has kept us together over the years. And I want to go back to what you were talking about, how you know growing up, because one special person that you had in your life really helped make a difference for what your future was going to look like, and so I want to just give you know a little shout out to Aunt Tammy and Blutzer Hart in the heavens there and just say what an experience you had with that, and then we can kind of dive into why that makes a difference today.
Speaker 2:Okay. So growing up my sister and she wasn't a biological sister, but to me at the time me and my mom lived with friends of the family and their daughter had Down syndrome, I tell the age of 21 knew no different that we were just friends of the family. So my weekends were spent doing special Olympics and weeknights, you know, special scouts. And the way that they raised her was she was no indifferent than and this is in the 80s and 90s, so way ahead of their time. But you know they let her drive a car for their her first time. It was only once, but they gave her the opportunity and always treated her as an equal in every situation.
Speaker 2:And I think watching 12 aunts and uncles and all of my cousins treat her exactly the same in every scenario really opened my heart. I guess too, Because, like I said, I was locked up. So there was a very criminal element to me and rough side to me. But as far as Tam went, aunt Tam, as she was done, she moved in with us and Sarah took care of her at the end. She was a blessing for her in those final months.
Speaker 1:Hi, thanks so much for joining the SGA Child Show. This is a really really good show.
Speaker 2:So in watching the way that everyone treated her, it became evident that the first years of my career was working for group homes with people with disabilities, seizure disorders and a couple of autism children as well. When I worked for the autism clinic they were extreme cases with multiple diagnosis and I'll tell you when we got our diagnosis for DJ. That was an impacting thing Because that's what I saw as autism in my memory and Sarah and I talked about how saying that it's a disappointment or it is devastating or any of these emotions that you feel can be super harmful for the kids down the road. But she's mentioned that on the show and the difficulty in tackling just all of the emotions, of the things you think you've lost, but not any knowledge of all the things you gained and how just the smallest oh, you ate a donut today, so excited.
Speaker 3:Who's Halloween today? My kid ate a pink sprinkled donut with marshmallow inside and we're having the best thing ever.
Speaker 2:So amazing because at age three he would run to the hallway and smash his head into the door and you feel so helpless. Yeah, at some point, through Sarah's research, we were able to get past that. And now you know he's 14 and he's having snowball fights with me and his sister in the front yard, like things we never thought would happen.
Speaker 3:No, I mean, that just barely happened over this last couple of days. And I'll tell you what. It was the first time that I've seen him intentionally pick something up and throw it at you or you know, well, let's not say that, let's not say yeah, isn't it intentionally, In a fun way.
Speaker 3:Yeah, in a fun way and really wanting to like engage you in his world, in his idea. So let's go to kind of the beginning, when you know we were five, we've been together for five years before we found out. We were pregnant with DJ and we got married and he was diagnosed while I was pregnant with our second and I think for both of us I mean it's just such a different experience because, like you had said, you have this kind of preconceived idea of a real experience that you had with real people and I had none. So I had this like blank idea and was like leaching off of some friends that were, you know, brandy, I can think of, for example, and just saying what does this mean? Like I don't, how do I even move forward? What do I do? And she was saying you love him, he's going to, he's so great he's, this is perfect, this isn't going to change anything as far as the way you love him.
Speaker 3:And of course, you know it did take some, like getting your sea legs. Okay. It took some like figuring out how to be successful for him and for us, and I think that had a lot to do with get the research that I was doing and the information that you know, but also being able to both of us, because I think in some other you know things that I hear in the world there's not always both sides that are on the same page that you know really want just what's best for their child and not caught in the ego of things and how that can be really hard for some. You know some spouses to work together, so as far as, like, both of us really wanted the same thing, we wanted to understand how to give him the best life possible, whatever it looked like that you know we would do that.
Speaker 2:We'll ensure. I think for us in particular, because we're blessed in the idea that we can come to an understanding of what the end goal is. But we are so vastly different as humans. Every single bit of us is different and I mean that from one spectrum to the other You're super nice and outgoing, I'm quiet and grouchy. It's just what it is. You don't like the sweet thing, I like it sweet, you know.
Speaker 2:And so it happens that way in parenting on a daily basis that I'll be upset for said reason at kid for doing this and you're common rational and then 15 minutes later you're upset and I'm common rational and I mean it really is such a unique balance. I cannot remember a time we've both been unhinged at any one specific thing ever in the 20 years we've been together, because we see things from so different around. I mean your mom's a nurse and dad's a fighter pilot and everything structured with tape and principles. And I just wanted to touch on that when we first started the parenting and I did have a little more background and you wanted to be the strict. This is what it is, this is how it is, and it took a bit of change and just basic understanding of what we went through didn't work for us.
Speaker 2:We got to get out of this box. You know and I don't think we realized it with Sydney until it was too late For one thing, she had already masked a whole new life in front of us. She was pretending to be something she wasn't, so we were starting off on our own. So I think we really were lucky to find each other and balance this.
Speaker 3:One really interesting that I can kind of tie this back to what you had said previously in that you took all of that you know system therapy and converted it into how you could help those around you.
Speaker 3:And you might be quiet, but people that love you like that you're really good.
Speaker 3:You know friends are people who always come to you for advice. They want to know that you know you can tell them how to help them maneuver through whatever is necessary for them. And it just for us and, as for me, in helping to learn how to communicate in another way that wasn't in the form of yelling or in you know, the maybe making, the passive aggressiveness and some other things that definitely, like I, didn't have tools to know how to use otherwise, and so I think that that was a big thing, was really learning how to be a good communicator, and that was something that you had in your toolbox already and that you had already kind of been mastering on your own, and so what a gift to be able to then like share with a partner and with your close friends. But then it also goes to the overall picture of being able to speak to your child and learn how to navigate that With Sydney, it was just learning how to try to be her friend, I suppose, and then understanding when our boundaries had been too much, I suppose.
Speaker 2:Yeah, and I mean in all fairness, she was pretending to be a Mormon and we used to joke that she was gonna marry a returned missionary and move off and never talk to us again, and so we lived under this like we're the bad people that swear and drink and go to bars and play pool, and so it was a very strange upbringing for her, and I have to mention that she was at her mom's half of the time, so it was an influence that we had no control over.
Speaker 2:And a little back to what you were saying about communicating, I feel like when I hear you talk about masking, it's generally with and about women, and I think, unpacking some of my childhood stuff, I realized my masking was this male, angry, loud, aggressive, violent, whatever stereotypical male thing and that was who I showed up for every emotion, and particularly right now, I'm very emotional and feeling teary-eyed and cry and, as you know, over the last like five to six years, I let that happen more than I ever did in the first 15 years.
Speaker 2:It was very much. Don't cry during the show, I don't show, but the relevance of it all as I get older grandpa's can cry at the time. No, anyone can cry. I just feel like a lot of males, and on the spectrum we don't have any role models that show openly what each emotion looks like, and so it's been kind of a process. Since the whole you're on the spectrum diagnosis I've allowed myself to unpack whatever computer brain I have that's built from the bottom up and just does what it's always done, and some of it's been useful and some of it's been blah, but was that my story.
Speaker 2:Right, it does help the communication, because then I can empathize more with what Anna's feeling, what sitting's feeling, what Sarah's feeling, what coworkers are feeling. And now, okay, he's mad. But is he really mad or is his feelings hurt? Yeah, dj just got embarrassed. That's why he's trying to imaginary throw me down the stairs. I think it's really good.
Speaker 3:And you said something so important too that I think is a stigma is, and I just I was listening to Autism Live and Temple Grandin was on the show and a caller or listener called in and said is it true that you know, autistics don't have empathy? What a stigma. And it couldn't be further from the truth. And I think you said exactly now.
Speaker 3:I think that when children are young and they're learning their emotions, that's really hard to gauge and to measure what a child's emotions may be.
Speaker 3:Not only do they not understand themselves, so then they can't communicate with that, with you, but just everybody is different and they process information differently.
Speaker 3:But when you look at the overall of how important it is with empathy that we realize that humans really, I think, have it in themselves and they all display it in different ways.
Speaker 3:But having a role model to be able to show you maybe that it's okay to have big emotions, have some emotions and show them and then also be able to just work through those and navigate themselves someday. Because we've seen in this process of raising DJ, I remember really in the very beginning well, maybe even when he was four or five trying to do like teaching him how to breathe, deep breaths and deep breaths. We've been working on it for so, so long. There was just one day when I heard him freaking out and went downstairs and piqued around the corner and he was taking deep breaths. It was in that moment that I realized that all of the hard work had just paid off so much. We can't ever say something's not important or somebody doesn't have this or anything, especially if they don't have a way to show it or don't know that that's what it is and are able to maybe express it themselves.
Speaker 2:Well, as we've seen through all the relationships with autism, it's about weakness and strengths, not has it or doesn't have it. I think that's to me, the key bit, because that there are so many autistic people who have empathy that may not know how to use it, show it, express it. Just because it's not showing us something, we don't have it. Like I said, I learned how to mask through my role models and in the 80s and 90s it was all macho, male and you carry that into the rest of your adulthood.
Speaker 3:Yeah, when we had the opportunity to really look at what we were going to offer this child, who didn't communicate the same way as other children or his older sister, we really had to learn not even learn teach ourselves, which is a whole nother outside the box type of thing, but teach ourselves how to communicate with this child and how to understand him and how to be patient for him. And then it also, like I said, I was pregnant with our second. I mean, what kind of things were going through your mind during that time? Like how did you think that would affect not only that, but then getting another, getting a diagnosis, you know, eight years later, I think that again, it goes back to having my sister in my life.
Speaker 2:It wouldn't have mattered if it would have been another super extreme autism. You know it was out the baby, and I think they asked us if we wanted to take the test to find out and decided it didn't matter what the test was. So no, don't do it. I mean, I guess my biggest fear was the amount of work it was going to cause you as a stay-at-home mom to have. You know, dj was a handful and you know, as you were talking, I was thinking about the things we had to learn. And when he got that flower book and was writing the scientific name for flowers and he could pronounce them and read them and we were clueless, they were like 25 letter words.
Speaker 3:And he was four.
Speaker 2:And yeah, he was four, writing them all over the house in crayon and marshland.
Speaker 3:Yeah.
Speaker 2:And not so much then as now. He expects us to know the things, the riddles, and when we don't, he gets disappointed. And it's a lot of weird different pressure to always remember what one specific commercial on the radio means or what a country if you're a certain country then you know what are we in that moment. But it is just amazingly rewarding when you get it right and he smiles at you and makes eye contact. It runs off and it's his genuine, true nature smile, not the forced smile he frequently gets. Let me say hello to him.
Speaker 3:Yeah, yeah, definitely. It's just been such incredible to think of the journey that it's been, because really, when he was in those early years, I mean we did sign language, we did. He was writing at two, so we were able to write back and forth and in some ways, more than anything, I made those charts that said you know my needs and my wants. He was able to point to those things and read them and tell us what he needed and wanted.
Speaker 2:And throughout all of that, we're telling people. No, he can read Look, he's getting all these words right. He's getting 19 of 25 words correct. And people were, no, there's no way. There's no way, you know, at nine months, telling people he's going to bat him on the toilet, and it seems like it's been a real uphill battle for both of us in the way that people have judged and decided what we were doing was not correct. But you know, at the end of the day, it's us that has to live with these kids of ours and be responsible for what they become. And I just want to commend you for all of your research and all the paths that you've led us down that have really benefited both of the children and Sydney as well.
Speaker 1:Yeah.
Speaker 2:She may not know it now, but when she becomes a mom she'll sure figure it all out.
Speaker 3:One must definitely, and to you as well, and also our marriage, and like the amount of closeness that we've had. I mean that's special to us as individuals and human beings. But the shared, I guess diagnosis, if you will, of you know autism, adhd, una, you know dyslexia, and I think that it really gave like this, this, like not even glue, but like this cement to our family and cemented in the fact that we all do like understand one another and really can benefit from knowing how our brains are more the same than they are different as a family unit. Because even as us as spouses, like it was, there was moment where, you know, I had got my brain scan done and came out and kind of understanding at that moment that we had just been, I had been teasing back and forth like well, everybody in the house is on the spectrum, like where do I fit in? Well, what am I doing? You know kind of a thing. And you would tease me about having my invisible autism card. I could show to people and didn't matter, but in-.
Speaker 2:You just got your stuff too much together.
Speaker 3:Exactly. But you know, even in that first little while just sitting on the information and really having it like understanding a little bit more about myself and maybe like my sensory issues or like you and I just talked about, I think, yesterday, the fact that my I kind of lived in fight or flight, 100%.
Speaker 2:I agree 100%. Getting your diagnosis, you were able to relax and all of the little noises and all of the things that for the first 17 years, you were. What's that? What's that?
Speaker 3:Startle the other things.
Speaker 2:Jumpy and you would hear everything. And you know I often try to get people to understand. Hey, you might be on the spectrum and this is the reason why I'm telling you is because you're still getting all these chemicals. Even though you're hiding it, even though you're sitting in the desk looking normal, sweating yourself off, like I am right now, you're getting all the chemicals and that's aging us and that's part of why the life expectancy of autism is lower, I think. And seeing you be able to exist and relax just in your being while you're doing work and not oh no, they're gonna find out on this or on that and just embracing who we are and just being, it has really been. I mean, it's been free for me.
Speaker 1:Yeah.
Speaker 2:I was a little meaner at first. I was saying my mind a lot more than it would ever have.
Speaker 3:You were like, hey, it's okay, I'm autistic, I can say what I want and be blunt if I need to be. No, and I think that that, you know, just comes with being, with maturity and with growing and realizing that, yeah, you can say you're always free to say what you want, but you're never free from the consequences from saying what you want. So that's true. So it's been really really great to have you here to get your perspective into kind of yeah, hear about masking and things like that from your perspective. I think is really a really great point that I thought about when you were talking. That comes to me now. That is really important, I think, for men to hear and that it's okay to unmask to, especially with your partner or with your kids. So it's been great to do this episode and special 250th episode. Holy moly, can't believe this.
Speaker 2:It's amazing how far you've come from. I want a louder voice. You've really done a lot. I'm glad to be here. Hopefully we can get a more focused line of questions on the next one and cover some non-Ramboli stuff, but it's been really really good to be here and yeah, Thank you, thank you so much.
Speaker 1:I love you, I love you, you're great.
Speaker 3:Happy and perfect, and you're perfect to be in great. Thank you, guys. We'll talk to you soon. Bye.