Listen to the podcast episode here.
Shawn:
Hello friends, and welcome to another podcast of The Pure Living Family Podcast. Today you'll get to know Marissa Conover, one of our board members and founders. Marissa was very much a part of our journey because her daughter, Lila, who was diagnosed with autism around the same time that Theo was being diagnosed, and Marissa and Angela combined together with the biomed moms to really map out the course to help these kids to reach their peak potential. We really love Marissa and Cameron who you'll get to know in the coming weeks, and we're excited for you to get to know her as well.
As you know, we've all started a 501(c)(3) federally recognized nonprofit, and so with that comes the opportunity to receive donations. 2024, we have the goal to run three day retreat camps for parents of kids with autism or other chronic illness diagnosis because these day camp retreats will serve as two functions. One for networking for parents to come together to find their support group and really help each other to process and live this reality. And then the second part of that is it will be an educational summit. We'll bring in experts in integrative medicine and yoga and functional medicine to help these parents to reach their peak potential and learn how to live their lives the purest way possible. Feel free to donate on our website, and I'll include the link in the show notes of this podcast. Thank you for listening and we hope you enjoy.
Eva:
Hi, this is The Pure Living Family Podcast. I'm Eva. My little brother's Theo. And my mom and dad are Sean and Angel.
Shawn:
Hey friends. Welcome to another podcast episode of The Pure Living Family Podcast. I'm excited to introduce another member of our board on the call today. Let me introduce you to our good friend, Marissa Conover. Marissa, welcome to the call.
Marissa :
Hi, thank you.
Shawn:
Well, and I want everyone to get a chance to get to know you, and so everyone knows that it's not just Sean in his basement and pretending like he's running a business. So Marissa, tell us a little bit about you. Where are you from?
Marissa :
I am from a really exotic place called Spanish Fork, Utah. It is in the heart of Utah County. It's exciting. It's about 20 minutes from where I live now, but...
Shawn:
Perfect. So born and raised in Spanish Fork, Utah. Where'd you go to high school?
Marissa :
Spanish Fork High. Go Dons.
Shawn:
And then you met your husband, Cameron, where?
Marissa :
Yeah, we met in college. So he was... again, so from Spanish Fork, went up to Provo, which is a good 10 minutes up. We were both going to school in Provo and we got set up on a blind date by a friend. We were living in student housing and it was like a very, very Provo dating story.
Shawn:
And what year was that that you guys started dating and got married?
Marissa :
We met in 2008... no, 2009.
Shawn:
Okay. Right about-
Marissa :
So yeah, 2009. We were married by 2010. Again, very, very Provo, quick dating, quick engagement. Had to get married quick so that we could go on a summer internship together.
Shawn:
Oh, where was that?
Marissa :
It was in Michigan, so he got an internship with Dow Chemical out there. And that was really fun. We actually loved Michigan. We were only there for the summer. We hear the winters are terrible, but we loved the summer out there. It was really fun.
Shawn:
I've heard that Michigan is incredible during the summer with all the lakes and everything that they have.
Marissa :
Yeah, so pretty. Lakes everywhere. It's pretty cool.
Shawn:
That's awesome. And then how soon until you had Lila?
Marissa :
We waited about four years to have Lila. I wanted to finish my degree because we were young. I was a teenage bride. I was 19, I was a baby, so I was finishing my degree in elementary education and I did my first year of teaching and got pregnant halfway through my first year of teaching. And then, yeah, had Lila when I was 24.
Shawn:
And then did you have Ollie before the diagnosis or talk us through that?
Marissa :
It was all very intertwined. So see, I got pregnant with Ollie my second... they're two and a half years apart. So yeah, around two-ish years after Lila. And we started to notice signs of regression with Lila right before I got pregnant with Ollie and just kind of chopped it up to, "Oh, just kind of like a speech delay, not a big deal." But throughout my pregnancy with Ollie was when stuff... it was a really stressful time. We were having some major life changes and starting to really realize that stuff with Lila wasn't just going to go away.
So I remember going in for my six week checkup after I had Ollie and my doctor asking, "So how are you doing?" And I just was like, "Oh, I'm fine, I'm good." And then all of a sudden I just lost it. One of those moments where you can't hold in the tears. And I just started sobbing. He said, "What is wrong?" I'm like, "I think my daughter might have autism. We don't know what's going on." And he was really sweet. He hugged me. And again, very Utah County fashion was like, "I'll be praying for you." And I was like, "Thanks."
Shawn:
So how old was Lila about this time?
Marissa :
She was two and a half.
Shawn:
Okay.
Marissa :
Yeah. She was officially diagnosed by right around her third... well, it was a little before I remember. We officially started ABA therapy right around her third birthday. So it was like we were in the process of scheduling evaluations. At that point we were like, "Something's up. This is not just a speech delay," which we had been basically telling ourselves and obsessively googling, "Is this a symptom of autism? Is this a symptom of autism," that kind of thing.
Shawn:
And how did you find Angela?
Marissa :
So Angela and I were connected through a mutual friend, so she was really good friends with this girl Kinzie from which she had dated a few of Kinzie's brothers and they were all from the same town. And then Kinzie and I became best friends because we taught our first year together. And then right around the time we had just gotten Lila's diagnosis was when you guys were going through things with Theo and she connected us and we've been really good friends ever since.
Shawn:
So you were part of the original biomed moms from the beginning then?
Marissa :
Yep.
Shawn:
So talk to us about that like how that all kind of played out.
Marissa :
Yeah, so Angela just having more of an Instagram presence had kind of found a different group of friends that she had really resonated with and she invited me at that point to come and join their Instagram chat. And since, I mean, that was... I'm so horrible with dates, but that was probably 2017 like end of 2017. And I mean, it's been years now that we've all been all connected.
We did a trip last year or two years ago, and we're in the process of trying to do another trip and it really is the best feeling ever to be connected with people that get it and looking at things not only... obviously it's super nice to have friends within the autism community and there's tons of friends that I would consider that way or moms I've met at school. But there's another layer when you meet moms that also look at things in a more holistic way and approach things like kind of the whole body, and not just therapy, but look at things that way. That was huge because you kind of feel like a little bit of a black sheep in the autism community when you... And again, that's no shade to anybody. Everyone does stuff differently. But that was really nice to really get connected with these people and it's those types of connections that I feel like I will be connected with these women forever.
Shawn:
So you felt like a black sheep because you were approaching the holistic approach?
Marissa :
Mm-hmm. Yeah. You guys have dealt with this with Theo with him being very selective about food and stuff. I know people that their kids have lived for years on Doritos and goldfish and things like that, which again, I understand some people think you just don't have the capacity. Or my daughter goes to a school where it's a charter school and she comes home every day with bags of stuff. She comes home on Halloween, which is candy, just people that don't even try to remove sugars or food dyes or that kind of thing. And then within our community, there's even levels too. Some people are super strict and make everything themselves and some people try to stick to organic or gluten-free, dairy free, that kind of thing. So some people will look at you weird. I remember when we told my kids' school at first that we were going to do gluten-free, dairy free. They're kind of like, "Oh, okay. You're one of those people. Cool."
Shawn:
Yeah. That's funny.
Marissa :
Conspiracy theorists.
Shawn:
Yeah, no kidding. We're well known for that. And you guys were pretty much trailblazers before us. Talk us through how you found the stem cells in Panama and the decision-making process to do that.
Marissa :
I mean, everything has really come through the group, which is why it's so invaluable to find a pot of people that you just really mesh with on that level. How did I even first find out about that? It was probably through the group. I started following a few different Facebook groups and stem cells is something for us that we just very quickly felt drawn to and felt like that was something that we needed. With our kids, my youngest or my middle son has actually also been diagnosed with autism, even though he's kind of on the fence there. But we really feel like at this point, we've gone through gut stuff. We've gone through systemically, the whole body. We really feel like that kind of blood brain barrier is what we need to kind of break through.
So stem cells was something that really appealed to us just with the different things that it can do. And we did stem cells three times for Lila and Panama, and the very first time we went, we knew that it was a... we knew that we might not see anything. And we came home and I remember her sitting on the plane and her actually getting my attention and wanting my attention to show me that there were clouds outside the window.
Shawn:
Oh, wow.
Marissa :
She had never done anything like that before. And then we came home. I need to make sure I write these things down because now I'm forgetting little things. But I remember her coming and my husband was up the stairs and she came up the stairs and was like, "Dad, come downstairs. I miss you." And she had never strung that many words together. She had never asked for one of us in a social way, just wanting to hang out versus, "I need you for this," or one to two words, "I need this." And we both looked at each other and we were like, "Something is working. Something is different," to the point that we did it three times and I would love to do it again, but it's really expensive.
Shawn:
Why don't you talk through that? How much was it and what was the process going through that?
Marissa :
So I don't know what their prices are currently, but we paid around 16,000 the first time. That includes your hotel stay. They are connected to the Hilton Panama. It's a very nice hotel. I mean, there's that at least for 16 grand and you get free breakfast. So I mean, it basically pays for itself. But yeah, they put you up there, they do the entire process. Someone picks you up from the airport, someone takes you home from the airport. You don't have to leave the whole time if you don't want to, although I would recommend it. It was really cool getting to see. It's a place that I probably would never have considered going, just not really high on the list, but it's really cool.
This is totally off-topic, but there's this monkey tour that you can do where you go and take a boat out. There's all these little lakes and they'll pull up to these tiny little islands and start calling for monkeys. And these monkeys will come literally on your little boat and you can feed them peanuts and bananas and stuff like that. It was really fun. But you're there for a week. The first day was really intensive. They do blood draw, they do just a kind of generic workup just to make sure everything's good to go. And I think it's probably an hour and a half in the clinic, but then the next three days are when you receive the stem cells and it's quick. It's basically just like an injection. They do it through an IV, but it takes 5, 10 minutes and then you're out for the day and you can go feed monkeys or hang it out the pool or whatever you want to do. But yeah, it's got me feeling all nostalgic for it and wanting to go back but...
Shawn:
Do you remember what year that was when you went the first time?
Marissa :
Probably 2018. No. Yeah, around 2018. We went 2018, 20 19, and then end of 2018, 2019. And then we went the very beginning of 2020. And I remember it was around the time COVID was starting to pop up and people were starting to talk about it, and we kind of went through, "Do we cancel our flight? Do we not go? We don't really want to get stuck in Panama."
Shawn:
Yeah. No kidding.
Marissa :
And it was crazy. It was literally the week we got back that that's when airlines started shutting down. Flights started. I mean, I guess airlines never shut down, but everybody stopped traveling. So that was a pretty crazy feeling.
Shawn:
Yeah, some borders were closed because we came back from Cancun around that same time. We were on a family trip to Cancun. It was eerie because when we were leaving, the cab drivers were all begging us for, "I'll take you anywhere for discounted rates because there's nobody coming." And then when we got home, they actually closed a lot of different borders. So we were lucky. We had heard a lot of families getting stuck in Mexico and they just had to pay the fees for weeks and weeks and weeks but...
Marissa :
It's crazy. That kind of similar thing probably would've happened to us. It was the next week because I want to say Panama shut their borders. I don't remember, but it was one of those things where they started doing temperature checks and stuff as we were leaving, and you started seeing a few people here and there with masks, but it wasn't required or anything yet. But that was crazy.
Shawn:
That's crazy. So you see an increase in language from the very first time and then the consecutive times, any significant changes you saw from those other two times?
Marissa :
Same thing. It was kind of like we went from two words to sentences and then we went from sentences to back and forth conversation, and we've pretty much seen all of that stay. She still definitely has things that she deals with. And she goes to an autism charter school and she is a little stimmy. She's very her. But yeah, I feel like we really got a lot of connection with conversation and stuff, even though she still does a lot of scripting from TV shows, but it's cute. She'll use something from a TV show to be like, "Hey, let's go do something." The other day she was talking about a meteor shower and I was like, "Okay, well that's got to be from a show. We've never talked about a meteor shower."
And she goes into the kitchen, she starts preparing snacks, she's like, "The meteor shower's tonight. We got to go." And I'm like, "Okay." And then just tonight, 20 minutes before I got on this call, she's watching some episode of Doc McStuffins and they're outside, they're like, "The meteor shower, it's going to be totally cosmic." I'm like, I have heard that line before. But little things, I feel like it really got her to invite us into her world, and her world is still kind of different and interesting, but we're a part of it now is really the biggest way I would describe just our whole series of stem cells.
Shawn:
That's so cool.
Marissa :
What I feel like it gave us.
Shawn:
And how old is Lila now?
Marissa :
She's nine.
Shawn:
Nine years old. Well, and you've obviously been through it. You've been through a lot with Lila and your life and now that you're looking back and if you were introduced to families that were just diagnosed, what sort of advice would you give them?
Marissa :
My biggest thing would just be to have an open mind. I mean, it's hard because you want to have an open mind, but you also want to be careful. There's definitely things along the way that we've tried that... I mean, I think some things work for different families, but I think some things are also totally a scam. To be careful, but to also just really be in touch with your intuition like if you feel like something may help, explore it and try and find those people that you can really talk to like those real world experiences and just be open-minded to things because you never know what may help your child.
Shawn:
I love that. We feel like that intuition, I think is the hardest thing to learn because our culture teaches us so much to turn to outside... understanding outside experts. And then now all of a sudden, I'm an adult and I have to be an adult, and I have to make decisions not only for myself, but for this vulnerable child is terrifying.
Marissa :
Totally.
Shawn:
Well, and we're so grateful to have you as part of the nonprofit and to be involved. What do you want to contribute or what are you looking forward to the most with the nonprofit?
Marissa :
My biggest thing is just helping parents and helping parents just kind of get a break from the life. Exhausting. It's hard. I have some people in my life that just want to take a vacation. And I've always said for years now, before I even had a child on the spectrum, to see them year after year have to split up for a family vacation so that someone could stay home with their child. And to be able... I was always like, "There's got to be some sort of group that would put together some sort of a retreat or something, or a trip or some sort of way to give these parents just a family vacation." Because I've watched people in my life, marriage is just struggle. I mean, you hear all of these abysmal statistics about parents and divorce rates and stuff like that.
I've always felt very passionately about if it takes a village, where is the village that is helping, giving parents a reprieve from the difficulties of having a child that is self-harming or that can't speak and cannot say what they need. I mean, everybody needs that. Insurance is like, "Hey, well we'll pay for 40 hours of ABA a week," but where is the, "Hey..." Obviously there's some things, but I've always wanted to try and be a part of something like that. And I feel like that's what this foundation can really do for parents and hopefully give them some sort of an outlet to feel like they are not alone and to just take a little bit of that stress off their plate, lower that cortisol a little bit.
Shawn:
Well, I love that. And honestly, I've been pretty jealous and envious of the biomed group because I feel like you ladies have this outlet to speak your truth and the difficult things, those tough emotions, those ugly thoughts that you have in your head, you have somewhere to go and to speak them. And I think in my experience for a long time, I've held that in a lot. And I think that's true for a lot of dads. I don't know if Cam's been the same way, but we internalize so much and then we feel isolated and alone, and that's what really makes us sick both emotionally and physically. I don't know if you've experienced that on your side too.
Marissa :
Yeah, no, I mean just something... I mean, I feel like women inherently sometimes find each other and do that, and I feel like it's just more natural. Not that that's how it should be, but to be able to harness that. And I feel like you've seen that for Angela and for us in the group, and you're trying to take a step further. How can we get the whole family involved? How can we get the dads... and some dads don't want it, some dads do, but find... so that they can find that same connection. And I would even take that a step further and say that even the dads that don't think they want that, need it, they all need it. Everybody needs that connection. Everybody needs at least the opportunity to have that so that they don't feel so alone.
Shawn:
It's interesting because I work with Dr. Robert Glover in the Integration Nation. And I mean, this is the general public population where Integration Nation is a group built for men run by men. And it's a common thread, not just for the autism community, but all men as a whole is we're disconnected. So many people have left religious practices, especially our generation. I mean, we're in Utah and there's a dominant religion here, but I'm speaking of religion overall. So many people have left those practices and those culture rituals. And now there's this absent of feeling disconnected and isolated. And so I totally agree with you is how do we create the family? And I've been criticized a little bit with the name of the foundation, Pure Living, like what the hell does that even mean? Because some religious connotations that people automatically assume because we're in Utah and it's more about our relationship with food.
But then that family is such a big part of what we are is sometimes family is not blood relatives, sometimes family is people that share a similar experience that they can relate to and speak to. And so I'm really grateful for you and Cameron because I can't carry all the load with Angela and everything that she feels and works through. And so I'm grateful for you and Laura and that whole group for really helping Angela to deal with everything. And yeah, my ambition is that we help more families in that space. But any final thoughts before we close it out?
Marissa :
No, I just want to echo what you said. I'm so grateful for this group. I just feel like we were all... it was very... I don't know, so cheesy to say, but very divinely purely if we want to say that, intended for us to all become friends like this and to be able to have each other's backs and just really grateful for you guys.
Shawn:
Well, I'm a corny guy and I appreciate that. And the phrase I love is divinely designed. It is a perfect phrase. This all was divinely designed for us to meet and to experience this for Lila and Theo to bring us all together. So we're really grateful to you and Cam and your family, and we're excited for the work that we're going to do together. So thanks for joining us on the call and letting everyone get to know you a little bit better.
Marissa :
Hey, thanks so much.
Eva:
Hi, this is The Pure Living Family Podcast. I'm Eva. My little brother's Theo, and my mom and dad are Sean and Angel.