219 – Jessica & Chris Patay of Rancho Palos Verdes, CA Parents of Three Including A Son With Prader-Willi Syndrome

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at horizontherapeutics.com.

Jessica Patay: He’s compassionate. He asked great questions. Yesterday morning he said out of the blue—because I was doing his morning routine, so this is 6:30 in the morning—Ryan says, “What makes a good marriage?” Where did that come from?

Chris Patay: Yeah.

Tom Couch: Those are our guests this week, Chris and Jessica Patay, parents to three children, including Ryan, 18, who was born with a rare genetic disorder Prader-Willi Syndrome.

We’ll hear all about the Patay family, including how Jessica started a not-for-profit helping parents of kids with special needs. It’s a fascinating story that we’ll hear on this week’s Special Fathers Network Dad to Dad Podcast. Say hello now to host David Hirsch.

David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the  Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children can connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help, or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad.

Tom Couch: So let’s hear this conversation now between David Hirsch and Chris and Jessica.

David Hirsch: I am thrilled to be talking today with Jessica and Chris Patay of Rancho Palos Verdes, California, who are the parents of three. I’d like to thank you for doing a podcast interview for the Special Fathers Network.

Jessica Patay: Hi, David. Thanks for having us.

Chris Patay: Thank you.

David Hirsch: The two of you been married for 25 years, and are the proud parents of three, Luke, 21, Kate, 16, and middle child Ryan, 18, who was born with a rare genetic disorder known as Prader-Willi Syndrome.

Let’s start with some background. Jessica, where did you grow up? Tell me something about your family.

Jessica Patay: Sure. Thank you. I grew up in Los Alamitos, California, so a Southern California native. I have such a long story. A lot of siblings. I’m one of 10, but it’s a Brady Bunch and more story, a very unique family, and I definitely appreciate all my siblings.

I mainly grew up with my mom and my sister Jennifer in Los Alamitos. The other siblings are older. I then went on to a local university, and then transferred out to Oklahoma. When I had enough of Oklahoma, I came back to California and started working.

David Hirsch: Excellent. So you grew up in a blended family. That’s what I heard you say.

Jessica Patay: Yes.

David Hirsch: And lots of siblings. Out of curiosity, what did your dad do for a living?

Jessica Patay: My dad was a tax attorney in Los Angeles for many, many years.

David Hirsch: And I’m assuming he is retired now?

Jessica Patay: Yes, he is.

David Hirsch: Okay. And how would you describe your relationship with your dad?

Jessica Patay: Great question. I would say that my dad did the best that he could with how he was raised. He and my mom divorced when I was very little, but he always made sure that he was a part of our lives.

So we were with him every other weekend, and he would drive from LA to Los Alamitos to take us out to dinner every week. Every other week he would bring some of my other half siblings along. He created family vacations and took us skiing every year with whichever half or step siblings could be a part of that trip. I’m grateful that he definitely made the effort.

But he was not a father who emotionally poured into us. And so I had to work through that, obviously. As you get older and start to look at your own family, when you’re in college or post-college, you can kind of look at dynamics and relationships, and what do I want for my life and marriage and family life. And you have to work through those things.

David Hirsch: Well, thanks for being authentic and transparent about that. I’m wondering if there’s something that you picked up from your dad that you’ve incorporated in your own parenting, something that you know is directly the result of the relationship you have with your dad.

Jessica Patay: That is another great question. I don’t know that anybody has ever asked me that, David, and I’m going to have to sit on that a little bit. But what comes to mind is my dad was always affectionate upon greeting. And I don’t know…it seems like it was very much a part of the Jewish culture. My father is Jewish, half my family is Jewish. And that always stood out to me, that no matter how old we all got, all of us siblings, he was still would greet with a hug and a kiss. So I think I try to be like that as a mom.

David Hirsch: Yeah. Well, thanks for sharing. So, Chris, let’s go to your background. Where did you grow up? Tell me something about your family.

Chris Patay: Sure. So I grew up in Palos Verdes, not too far from where we are now. My family background is almost opposite Jessica’s. We joke about it. I have one brother, my fraternal twin brother, and a sister. Jessica used to always joke that I grew up in a Beaver Cleaver family home, very close, and I’m still close to my brother and sister.

My mom passed away about 14 years ago, and my dad just turned 80. My brother, sister and I just had the recent privilege of going on a vacation together with him, just the four of us, for the first time in many years, which was nice.

David Hirsch: And what did your dad do for a living?

Chris Patay: He was an engineer who worked in aerospace industry. He came out from the Midwest to Southern California in the late sixties, like the classic stereotype story in the South Bay here, and worked for TRW for many years.

David Hirsch: If I remember, the family was from Pekin, Illinois.

Chris Patay: That’s right, Pekin, Illinois. My dad’s family were Hungarian refugees that came over after World War II. I think my dad was nine years old when he first came to the US, not speaking English and starting life over. And fortunately they had the opportunity in this country to do so.

David Hirsch: Yeah, well, the reason I know where Pekin, Illinois is, is it’s in central Illinois, and I would pass it on my way to school, driving to college and back at the University of Illinois in Champaign. It’s a real community. Not the big city like Chicago or LA or something like that.

So it is a little bit of the American dream, right? Immigrants, refugees come to the US, start their lives over, and they make something of themselves. It’s always uplifting to hear there’s another story like that. So thanks for sharing.

So I’m curious to know, how would you characterize your relationship with your dad?

Chris Patay: I’d say it grew over the years, and I’d have to say after my mom’s passing, it probably became much closer. Growing up, my dad worked a lot. He was more reserved. My mom was the one that kind of ran the household and organized everything. And my brother and I had a few special trips with my dad, just the three of us.

But I’d say he was fairly reserved, and growing up, I felt like he was a little more emotionally reserved. But it’s interesting. It seems like he’s much more tender and emotional in the last decade or two. After my mom passed away, it was a hard time for him. It was a hard time for us. And I think there was some experience in that pain that kind of, in some sense during that time, drew us closer.

David Hirsch: Yeah. Well, sorry to hear that your mom passed at such an early age, and it seems like your relationship may have evolved as a result of that. Your dad is playing both roles, where he could probably just have hung back and been like most dads of his generation, just to be the provider and more traditional dad, and mom runs the household as the point person for keeping in contact with the children and organizing things.

Well, let’s switch gears and talk about special needs, first on a personal level and then beyond. And I’m curious to know, prior to Ryan’s birth, if either of you had any exposure to the special needs community?

Jessica Patay: I did not.

Chris Patay: Yeah. And I did not.

Jessica Patay: I’ve had a long time college best friend who had young girls with autism, but she was across the country. So I didn’t have anybody in my immediate world, but that was my first exposure, I would say.

David Hirsch: So Ryan is your second child, middle child. How did his diagnosis come about, and what is Prader-Willi Syndrome?

Chris Patay: Who wants to answer? Yeah. Well maybe actually you can describe your pregnancy, to start.

Jessica Patay: Well, yeah, normal pregnancy, normal labor and delivery. And when he was born, you know how newborns let out that horrible scream right when they’re born, and his cry only lasted 5, 6, 7, 8, 9 seconds maybe. And I remember thinking, “Huh. Well, maybe I got an easy newborn.” Because Luke, our first, had his days and nights mixed up, got kicked out of the nursery because he cried a lot. And so I just remember when Ryan was born that that stood out to me.

And quickly that first day the professionals were telling us, “This is going on, this is going on, this is going on.” I was still kind of in that ooey gooey fog, and so excited to meet Ryan, that I didn’t realize the gravity of the situation until the next day when they said, “We’re going to run a CT scan, we’re going to run an ultrasound, we’re going run blood, we’re going to do all this stuff.” Then it got really serious.

So Ryan was born with hypotonia, low muscle tone. We spent a month in the hospital not knowing what was wrong, and this was before smartphones. So I lived at the hospital with my flip phone, and Chris was at home able to Google things. He looked up a few of the symptoms that Ryan had: failure to thrive, hypotonia, some other medical issues, and he found Prader-Willi Syndrome.

So he asked the doctors to test, and we had several people say, “Well, he doesn’t look like it,” because there is a look in PWS, not as significant as Down syndrome. And Chris said, “Well, that’s okay. Just test anyway, because we don’t have any answers, and it’s a simple blood test.” So we were able to go home after a month with a feeding tube, and a week later we received the diagnosis from our pediatrician confirming that he had Prader-Willi Syndrome.

And so right away all the early interventions started. Physical therapy, occupational therapy focused on feeding, because Ryan couldn’t suck. He didn’t cry. He didn’t cry for food, and he was very sleepy and hardly moved. And then I think we started speech therapy by one year.

And so the early years are all about milestones. Gross motor, fine motor speech. Certainly for Ryan, feeding was a big focus the first year. It took him a year before he could get off the feeding tube and not need it anymore. Then when you read about the syndrome, I’ll let you jump in about some of the other symptoms.

Chris Patay: I know, it’s kind of ironic that when he was that little, he had trouble eating, because one of the most distinct features of Prader-Willi Syndrome is a lack of satiety or feeling full, that leads to basically insatiable appetite.

And so without proper diagnosis and being attuned to that, if left unchecked, most people with Prader-Willi Syndrome would end up becoming morbidly obese and struggle with a severe eating disorder. So in those very early days, we struggled to get him to eat as much as he could. But since then we have been needing to be very careful to keep him on a regulated food schedule, and also limit access to food. The eating component is just one element.

And by the way, Prader-Willi Syndrome is a rare genetic disorder that I think affects maybe one in 15,000 or so individuals, affecting chromosome 15. And it’s a spectrum. There are some who are very high functioning, and others that struggle in more severe ways.

And I’d say when most people meet Ryan—through I think a lot of hard work, he’s very thin and active now—when people meet him, he looks great. But he has a social awkwardness and his intellectual functioning is down a bit. So I think most people would say it looks like he has autism or that he’s on the spectrum. And that’s the initial reaction. But he’s doing well.

Jessica Patay: Yeah. So, the early years are definitely the milestones. And then you start to wonder, when is that food drive going to hit in childhood? And for Ryan, it didn’t hit till he was 13. And it was a slow burn, let me say that. There was a slow increase interest in food. We did not have to lock the kitchen till he was 13. And we didn’t have to get vigilant, like so watchful on the kitchen that it’s locked at all times. And then sometimes I’d even check in the middle of the night if I’m up, until he was 16.

And so kids or adults with PWS, no matter how well we do as parents in terms of regulating, having a food schedule, they will never be able to self-regulate. So they will have to be watched 24/7 for the rest of their lives until an amazing, miraculous breakthrough in research comes about to help that food drive, because it is life threatening.

Ryan has a lot of anxiety. I would say his anxiety and behaviors are probably harder than the food drive, although the food drive definitely has altered our life and our family life quite a bit. He’s a sweetheart. He’s compassionate. He asks great questions.

Yesterday morning, he said out of the blue—because I was doing his morning routine, so this is 6:30 in the morning—Ryan says, “What makes a good marriage?” Where did come from? You know? And then he’s also the kid that will fall apart because you asked him to, I don’t know, move his stuff.

Chris Patay: Yeah. We say his emotions are high all the time. He’s really high in excitement, really high in enthusiasm, or if he’s upset, he’s extremely upset. So that’s one definitely unique feature. It can be highs and lows, as we navigate him throughout the day.

David Hirsch: I want to go back to early on that first month or so. And if I heard correctly, Chris, you were the one that somehow stumbled across the Prader-Willi Syndrome in some Google searching you were doing. So is it accurate to say that that is not a standard test that hospitals do?

Chris Patay: It’s not, and part of the reason is that—and forgive me, this was 18 years ago today—maybe the tests are a little bit different now. But to really diagnose to requires a very specialized test. So it’s not one that can be just thrown into a panel.

And there are different levels. Without getting complicated, there’s a basic and a much more intensive test. And so I think it’s not part of a standard feature. And back then it was only tested if there was high suspicion, because only a few labs would test for it.

And then looking back at those first couple months, like any parent, I was panicked. “What’s going on? We need answers.” And being a very “take control” kind of person, I thought, “If the doctors can’t find the answer, I’ll find the answer.” I remember spending sleepless nights making a giant list of every rare disorder, and looking at all the symptoms and possibilities, and trying to deduce, “There’s got to be an answer somewhere.” And there are just a handful of things that kind of came out, and that just happened to be one of them. And until you can rule it out, why not consider it?

David Hirsch: Yeah. Well, it sounds like it’s almost like divine intervention that you would find out at such an early point in Ryan’s life what it is. Because based on what you’re saying, it seems like a lot of individuals who were born with Prader-Willi Syndrome would go undiagnosed for not just weeks or months, but maybe for months or years.

And I don’t know that the therapy would be any different. If there’s certain symptoms, you’re going to seek therapies that are going to address those symptoms. But I think it’s rather advantageous to know from a relatively early age what it is you’re up against.

And I’m wondering if there’s some important advice that you got early on that you can trace back to that early diagnosis that put you on the path that you’ve been on.

Jessica Patay: Well, I’m grateful that Chris did the research that he did, because he found the Prader-Willi California Foundation and the Prader-Willi Syndrome Association in Florida.

And so because he had knowledge of those organizations, as soon as we got that phone call from our pediatrician, the very next day he contacted both organizations. And within a day or two I received a phone call from my first mentor mom, Lisa Graziano.

And so having a diagnosis puts you on a particular path. It frames things. I think it provides relief. And it provides a little bit of fear and worry, because now you know what it is and what you’re grappling with and dealing with. Any diagnosis, any rare diagnosis, is not easy to swallow. And yet we then also had a community to plug into, which saved us. We jumped into our first support group when Ryan was two months old.

Chris Patay: Yeah, absolutely. I think that was probably one of the biggest benefits. I have to say the first month was probably…I mean, it was one of the hardest months of my life. You go through these feelings like, “Oh my gosh, is my life over? How are we going to get through this?” Especially reading the severity and the impact long term, and I think, “This is going to be our life.” It was hard.

I remember having a friend back then, when I was in my total mess, who said, “The hardest thing you’re going through right now is you’re shifting expectations. You had a vision of what life would be like with Ryan, with a second son, and you’re now having to shift your thoughts and dreams for the future. And that’s a painful process

That’s absolutely right. And I think getting involved in the community in the Prader-Willi California Foundation was a giant step forward in that initial healing. I remember going to the first support group meeting, thinking, “Oh my gosh, we’re going to show up, and everyone’s going to be like down and depressed, and miserable faces, and all sharing how everybody’s lives are just a mess.”

And then in particular, I remember coming in and seeing everyone smiling and laughing and joking around saying, “Hi, everybody.” And I’m thinking, “Why are they so happy? They say they have so much joy.”

And I remember in that moment thinking, “It’s going to take time, but we’re going to get through this.” And community does that. We now have a lot of joy now and a lot of joy with that community. Some of them have become our really close friends, and we celebrate our anniversaries together.

David Hirsch: Yeah. Well, I think having role models, positive role models like what I heard you describe, it gives you insight. It’s not all darkness. It’s not all, “Oh my gosh, what are we going to do?” They’re embracing life. They’re not going to let this hold them back. And it’s like you’ve taken a page out of their playbook, and hopefully others have taken a page out of your playbook as well.

You’re not parents to one child, Ryan—you’re parents to three children. And you have to be focused on what’s in the best interest of your whole family, not just the best interest of the one with maybe more demanding needs. So anyway, it’s very uplifting when I hear stories like yours

And not to focus on the negative, but what do you consider some of the bigger challenges? You’ve made reference to the vigilance that goes along with food, and that is one of the big issues that somebody with Prader-Willi Syndrome is going to have to be aware of. Or those that are caretakers for somebody with Prader-Willi Syndrome have to be aware of.

You also mentioned his anxiety and that his emotions seemed to run in extremes. That’s what I heard you say. It’s like a switch on or off. It’s not like in the middle. It’s like you said, highs and lows. Have there been any other challenges that come to mind?

Jessica Patay: I think just anxiety and behaviors in general and learning how to manage that, learning how to respond, learning how to not get triggered. And sometimes we get triggered and sometimes we don’t. Sometimes we’re zen and sometimes we’re not. We’ve learned a lot through the years from behaviorists. We’ve found amazing behaviors to be a part of our family and a part of our team for Ryan. The food drive is tough. I wish though, if I had to eliminate one piece of PWS, it probably would be the anxiety which leads to behaviors.

Chris Patay: Definitely the disruption on family life is hard. Even now he needs a lot of constant care. He can’t be alone. We were even just chatting the other day how as couples, you envision kids getting to a certain age—and he lives at home with us—where we’re free to go out and be spontaneous, do anything, anytime.

And that’s just not our story. We haven’t been able to take a vacation with just the five of us in quite a while. Traveling is very challenging for him. It’s too stressful for him. It’s too anxiety provoking, being away from home and routine. So there’s things that we still kind of feel a loss for. But we just need to create a different family story and experience for our other two kids. And that’s definitely been one challenge.

Jessica Patay: I would also add just the impact on siblings is a great impact, and I want them to be recognized. I want parents to hear that. I have a lot to say about that on another episode, another time. But Luke and Kate are amazing human beings. They are so compassionate. They’re so patient. They are resilient, and it does take a hit on their lives. And I wish I could take the hit, but then keep all the personal, beautiful human growth that it does provide for them.

David Hirsch: I remember listening to one of the episodes where you interviewed Kate on your podcast. And I think she was 15 at the time. I could be off a little bit. And I thought, “This sounds like one of the most mature 15-year-olds I’ve ever heard in my entire life.” She just seemed to be so at ease and be able to reflect on things that I’m not accustomed to. We have five adult children, they’re 25 to 32. So been there, done that, going through the teenage phase. And I thought, “Wow, the two of you are really getting it right there. If Kate is any demonstration or example of your parenting, it’s like, “Wow, you hit one out of the park there.”

Jessica Patay: Aw, thank you.

Chris Patay: Thank you. She’s a special kid. She’s a great kid.

David Hirsch: And I can’t speak to Luke, because I don’t remember you interviewing Luke, or maybe I missed the episode where you interviewed Luke. So I am always curious to know, when there’s an individual in the family that has special needs, what the impact has been on their siblings, on the marriage, or the extended family for that matter. I’m wondering what impact Ryan has had on your extended families.

Chris Patay: Yeah, good question. Gosh, it’s hard to know what it be like if it were any different. But they all love him, which is great. Very patient, I think. He requires extra patience, and they have been a great support. I think it can be challenging.

Because even with family get togethers with my brother and sister—we try to find times to all get together, like once a year—and one challenge is that doing so with Ryan, everybody has to somehow accommodate him in some way. And that can not always be the easiest to navigate, if everybody has a vision on what they’d like to do. But we just think, “Ah, sorry, it’s just not going to work with Ryan.” So it does impact extended family in different ways. But on both sides of the family, everyone’s been so gracious.

Jessica Patay: They’re very understanding and supportive. And we try to host as much as possible, because we can control the kitchen. I’m not telling my sisters-in-law, “Can you please put away the food?” So it’s just easier to host here. I love doing that anyways, but it’s just easier, whether it’s my side or Chris’s side, to host, because I can control the whole food situation.

David Hirsch: Yeah. Well, thanks for the transparency about that. I just want to make sure that we haven’t overlooked any supportive organizations, ones that your family’s relied on, or more specifically for Ryan’s benefit. You made reference to the Prader-Willi Syndrome Association, which is the Florida organization, the national organization in Florida. You mentioned the Foundation for Prader-Willi Research.

Jessica Patay: We didn’t mention it, but that is an organization that exists and is doing amazing work conducting research. It’s all research, so I’m grateful for that, for sure. I would say the organization that’s had the greatest impact on us is the Prader-Willi California Foundation, the PWCF.

Chris Patay: Yeah. The other one wasn’t around when Ryan was diagnosed, or it was in very early days. So we haven’t been as involved with the Foundation for Prader-Willi Research. But the Prader-Willi California Foundation has really been almost like our home community. We’ve both been on the board of it. I was on the board for many years.

Jessica Patay: The resources, the education, the advocacy—we’ve just received so much that has impacted our daily life that has helped.

Chris Patay: And I have to say, Jess mentioned that her first mentor, Lisa Graziano, was the executive director for many years, and she was the one who first really greeted us into the Prader-Willi family world. It’s a story I always love to tell.

This was days after his diagnosis, and we’re trying to get a handle on it, and we’re still a wreck. We receive a voicemail, and her first words, I still remember, were, “Hi, Chris and Jessica. This is Lisa Graziano from the Prader-Willi California Foundation. I just want to say congratulations on the birth of your son.”

And I still get choked up, hearing that, because at the time we had not heard congratulations at all since the day Ryan was born. This was maybe, what, six weeks later? But for the last six weeks it was all panic. And I think for family and friends, they don’t really know what to say, in those early years when they know something bad is going on. So yeah, it’s all, “I’m sorry, I’m sorry, and how’s everything going?”

So just to hear that. I don’t even remember what else she said. It just struck me, saying like, “Yeah, this is a life to celebrate.” And of course, it drew me. I thought, “Who is this person? I want to find out, and get to know her.” And that phone call was actually even a turning point in the change in our mindset, how we came to accept it.

David Hirsch: Yeah. Well, it’s interesting you should mention that, because from what I can ascertain from what you just shared, she has the license to say congratulations. Not that anybody else couldn’t have said congratulations on the birth of your son. That’s just something you’d expect to hear. But knowing what you were going through and the challenges that you were up against, somebody had already been there and done that, somebody who’s a part of that community has a license with the highest level of authenticity to say congratulations and with the high level of sincerity, knowing what that entails.

So I think of people like her as being the angels in our lives who are there at precise times so they are able to help you make that shift, that mind shift that is really important. Because unfortunately, not everybody has people that speak into their lives like that, and so early, like you were saying, if that was the first couple months. What a blessing it was, or is, that you formed this relationship, and it sounds like it’s a lifeline.

Chris Patay: Yeah, absolutely.

Jessica Patay: For sure. Absolutely.

David Hirsch: In a prior conversation, I think you also mentioned the Harbor Regional Center as playing an important role in your family’s life as well.

Chris Patay: Yes. I’m currently on the board and actually currently serving as president of the Harbor Regional Center. And essentially in California we have something called the Lanterman Act, which is the act that basically governs the provision of resources to persons with disabilities in California. There are regional centers throughout the state, and Harbor Regional Center serves the southwest area of Los Angeles. It’s been a great organization.

They’re also one that contacted us very early on, and Ryan got Harbor Regional Center qualified for services. And I remember, still being so naive and ignorant, wondering, “Well, do you take insurance? Or how what’s the deductible? How does this work?” And they’re all, “No, no, we’re just here to provide services to help support you.” So it became an important resource.

That, and obviously the school system as well. We have a fabulous special ed program and teams here in our area. So at some point I thought, I’d like to get involved, and have been for a few years now.

David Hirsch: Excellent. Well, we’ll be sure to include information on each of these organizations in the show notes, so if people are curious to learn more about it, it’ll make it as easy as possible for them to follow up.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a Great Dad coin. Thank you. Now back to the conversation.

David Hirsch: So let’s switch gears and talk about “We Are Brave Together.” And from what I remember, it was started in 2017, and being a numbers nerd, that would’ve been when Ryan was maybe 13 years old, five years ago.

Jessica Patay: Yeah. He was just 13.

David Hirsch: So that seems sort of audacious to be starting a not-for-profit organization, Jessica. And I’m wondering what the backstory is there, and how this amazing organization that you’ve created came into existence.

Jessica Patay: You’re not the first person to say that, because Kate was 11 at the time, or 10 at the time. And I had sweet friends say, “Your kids are still young. How are you going to do this? Why now? Why not wait until your youngest is in college?”

I just had to. I had been wanting for years to do something for caregiving moms. We don’t really say special needs moms anymore, do we? I don’t know. That’s what I used to call them. I always wanted to do something because I had benefited so greatly from the community of moms that walked the journey with me, whether they were within the Prader-Willi world or within my school district.

And I believe so strongly in the friendship of women and that when women come together and leave behind cattiness, competition and comparison, they have so much to offer each other. And I wanted that for other women. I wanted other moms to feel like they weren’t alone, that they had a sense of belonging, that they would be validated in their unique, brutal, beautiful journeys. And so I just had to do something.

I was just kind of sitting on that desire, and then it all came together. I had started doing these fluffy girlfriends retreats with my best friend from college, Kimberly Coy. And we turned to each other in the spring of 2016 and said, “This is really fun, and this is great to put on these little intimate retreats, but it’s expensive. And so where could we actually meet a need with this idea of having a weekend away of fun and inspiration and a mommy break?”

And we dreamed up, “We Are Brave Together.” That name was birthed at that time because when women come together and support each other, they can go back into their crazy lives and be braver. When you’re a part of a community and you hear each other’s stories, you connect, and you realize, “Oh, they’re being brave in their everyday life. I can be brave in my everyday life. I see you rising up. I can rise up.” And so it was birthed.

Chris Patay: Can I add, can I….

Jessica Patay: Oh yeah, go ahead. Yeah, like your perspective.

Chris Patay: Well, I think the other thing, I mean, I think you would also say, because I still remember you’d started a blog too….

Jessica Patay: That’s true.

Chris Patay: And had started being very authentic and talking about the joys and the struggles of being a mom raising a child with special needs and being very honest.

Jessica Patay: Yeah, that was a contributing factor.

Chris Patay: And I think one thing that kind of came out of it was how many people started reaching out and really, really resonating with what you’re saying. And some from around the world. I remember you saying, “Someone contacted me from Russia wanting to talk to me,” or was commenting on something. And think that also kind of sparked the need, like, wow, it’s hitting a chord that really speaks to moms having a tribe, a community, where you’re able to be real and be authentic and grow together.

Jessica Patay: For sure. Thank you for saying that, because that definitely gave me a voice. It gave me confidence. Because I was being so bold and so vulnerable that I would just cringe sometimes at what I would share. But then I would get a text message, then I would get a Facebook message, then I would get an Instagram message, and somebody would say, “Thank you for saying how I feel and putting words to my journey, and I’m so afraid to say it out loud. So thank you for being my voice.” And so that definitely was part of the foundation of my confidence to move forward. For sure.

David Hirsch: Would it be reasonable to say that between the blog and this retreat or getaway experience that you described, that it was therapeutic?

Jessica Patay: Yes. Therapeutic and cathartic. For sure.

David Hirsch: Yeah. Well, a lot of ideas are just simple ideas that have some very modest or humble beginnings. And I’m wondering, how has that evolved? What’s the scope of the program that you have today?

Jessica Patay: Well, our mission from the beginning is still the same mission today, and that is to combat the isolation and compassion fatigue and burnout that moms face by providing support groups, education and retreats. And then since then, we were able to start a podcast, in the middle of covid. May, 2020, we launched the “Brave Together” podcast.

Recording: This is Jessica Patay, your host for “Brave Together” podcast. I am here to serve, encourage, and inspire you in your journey as a special needs mom. This is your tribe. This is your community, your place to be reminded that you are not alone. Follow along as I share stories, inspiration, and resources just for you.

Jessica Patay: And we just hoped to really grow and grow all of those areas. We now have satellite support groups in different spots in the United States, and we are in New Zealand and Australia, and I hope to have more international support groups as well. We have an international membership for sure. We probably have 1600 moms and represent 45 states in the United States and about 15 countries.

And I think that will just grow, because the need is there for moms to feel like they’re not alone and to have non-judgmental, loving, sacred support among women who get it. Moms who want to be a part of the community of “We Are Brave Together” can just go to our website and join. They’ll get our newsletters, they’ll get our announcements, they’ll get our detailed emails about our retreats.

David Hirsch: Yeah, well, remember our listening audience is mostly dads who are raising kids with special needs. And Chris, perhaps maybe from your perspective, you can provide the testimonial that our dads, our listeners, would want to have, as far as signing their wives up, signing the mother of their children up, for these “We Are Brave Together” retreats.

Chris Patay: Obviously as a husband and wife, we both have a vested interest in pouring into our kids. I think most recognize there is a special burden that gets placed on moms raising a child with a disability. One thing I know that has come through it, and you’ve heard quite a bit, is just how much it has met a deep need inside of the moms who have attended.

And that benefits the entire family, as there’s nothing you want more, as a dad and as a husband, than for your wife to get the support she needs and is struggling to find that connection to get it. And the best way you can help take care of a person with a disability is to make sure the caregivers are in a place where they’re equipped and capable emotionally, and have that inner strength to do so successfully. And I think that’s one big part of it. And as a husband, not going, it’s definitely been a tremendous help for Jessica, and we all benefit from it.

David Hirsch: Yeah. Well, the way I think about it—and again, I’m just a financial nerd about it—is that it’s not an expense, it’s an investment. And if it’s $200, it seems like a very small price to pay for an investment that you know is going to have significant upside and will pay dividends for weeks and months to come.

Chris Patay: Absolutely.

Jessica Patay: It is. And could I add something? To the dads out there listening, I think it’s very hard for some women to ask for help. It is very hard for them to say to their spouse, “Honey, could you take on the responsibilities for 48 hours?”  Or longer, if you’re a mom who has to fly across the country to attend our retreat.

It’s very hard for moms to ask for help, because they’ve been sent the message that you should be a martyr, you should give all of yourself to your children and your family and not think of yourself, because that is selfish. And that’s just cultural indoctrination. I know moms mean well, but they forget themselves, and they’re afraid to ask for help.

And the message we say at “We Are Brave” is that you are worthy of taking care of yourself. But the other thing too is your family is worthy of taking over for the weekend and having your confidence in them that they can handle it without you. So I feel like it’s a win-win. I think it gives dads confidence like, “Look what I did this weekend. I took over, right? I did this.” Or the other siblings that might help out that weekend, or what have you.

I think it’s empowering for the dads, and you’re giving dads an opportunity to gain that confidence in caregiving if they’re not hands-on. Chris is very hands-on. I can leave, and he seamlessly can take over. We’ve just operated this way from the beginning. I am eternally grateful that he’s hands-on.

And I’ve always asked for help, because there were other things that I needed outside of family life—to go for a run, to have a girls’ trip away. And for moms, it’s not easy to ask for that. So I encourage you to ask your wives, “Do you want a break?”

David Hirsch: Yeah. Well, I think it’s great advice. You need a break. Thank you for sharing. I’ve heard it said, similarly, that it’s important to be selfish before you can be selfless. So it’s important to take that step to take care of yourself, so you can bring your A game, before you can be selfless. I don’t know that it’s a martyr, but I know exactly what you’re saying, that there’s an expectation in society that moms are just going to suck it up and do whatever it takes.

Chris Patay: Yeah. It’s really the airplane analogy, you know? When the oxygen mask come down, if you don’t put yours on, you’re not going to be able to help the person next to you.

David Hirsch: Exactly. So I’m wondering if there’s any other advice, just pulling back, not “We Are Brave Together” advice, but just advice that you might share with a listener that goes beyond the scope of what we’ve already discussed.

Jessica Patay: I think because when you’re caregiving, it’s added stress, added exponential stress and responsibilities and heaviness, that couples’ therapy and family therapy are important, and not because you’re in crisis mode. If you get to crisis mode, for sure. But I would say we’ve done check-ins through the years. We still don’t think it’s enough, but we have had date nights away, even at a hotel 15 minutes away, just for us for 24 hours.

And in recent years we’ve started family therapy, which I would highly recommend early on in the journey, before the siblings can say, “No, I don’t want to go. That’s not cool.” We’ve learned so much the last couple of years from Luke and Kate, and I’m so grateful that they have been willing to go and to be honest. And there are definitely things I wish I could rewrite in terms of family dynamics. But we’ve learned a lot. And so I would just encourage any parents out there listening, if that’s a resource they can tap into, to look into it. It’s really helpful.

David Hirsch: Excellent advice. And I think it’s under the banner of reaching out for help. Don’t think that there’s a stigma or a weakness associated with that. There are professionals who have got all the experience in the world, who will help you see things or understand things that you might not be able to, because of the day-to-day. So, it’s excellent advice.

So I’m wondering if there’s anything else you’d like to say before we wrap up?

Chris Patay: Not that I can think of. I mean, other than thank you. It’s been great chatting and having the opportunity to share our story. So we really appreciate what you do too. Your podcast is fabulous, and we feel blessed to be able to be a part of it.

Jessica Patay: For sure. Thank you for this opportunity. It’s fun to do this together, so I appreciate that, David. Thank you for pouring into the world of dads. And I would like to ask you a question. How do we help more dads recognize that they need their own unique support too, in this world?

David Hirsch: That’s a great question. I would say they just need to be in the presence of other dads who have been there and done that, whether that’s on their own or tapping into local resources in their community. And short of that, listening to podcasts, watching some of the videos that we’ve produced on the dozens of topics that dads tell us are important to them.

And beyond that to be engaged on your own. Listening in the creature comforts of your car or your office, or watching a video when time allows, is just time you’re investing in yourself. But I think it is important to be in the presence of other guys. And we have a series of meet up groups that we’re establishing around the country and a few outside the country.

And then we actually have a Mastermind group where these guys get together on a weekly basis. And along the lines of making investments, the dads that are involved in our Mastermind group, which is now over a year old, are paying a hundred dollars a month, $1,200 a year, for the benefit of getting together for 75 minutes a week on Wednesday nights from across the country. And it’s magic, really, the conversations that are taking place. These are virtual conversations. They’re done on Zoom.

And then we also have the concept of an annual retreat for those that are involved with our Mastermind. They get themselves there, and we cover all the expenses, the food, the shelter or accommodations, and the extracurricular activities that we have planned, including outside speakers that come in.

So we’re doing the same type of work as you are. We’re just taking it from the dad’s angle versus the mom’s angle. And I’m hoping that our paths will continue to cross and that we can cross pollinate what we’re doing. Because no doubt there’s a number of dads who are connected to the moms in your network, and obviously there are a number of moms connected to the dads in our network. And we just have to educate people about the different resources that are available.

Jessica Patay: Yes, absolutely.

David Hirsch: So let’s give a special shout out to our mutual friend Effie Parks of “Once Upon a Gene” for introducing us.

Jessica Patay: She’s so fantastic. I got to meet her in person when she was in California and it was golden.

David Hirsch: Absolutely. So if somebody wants to learn more about “We Are Brave Together” or to contact you, what’s the best way to do that?

Jessica Patay: They can go to wearebravetogether.org, and see all our offerings. We’re on Instagram at “We Are Brave Together.” You can certainly reach out to me personally at jpatay@wearebravetogether.org.

David Hirsch: Okay. We’ll be sure to include that in the show notes so it’ll be easy as possible for people to reach out to you.

Jessica and Chris, thank you for taking the time and many insights. As a reminder, Jessica and Chris are just two of the individuals who are part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Ads Foundation is a 501(c)3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your support. Jessica and Chris, thanks again.

Chris Patay: Thank you.

Jessica Patay: Thank you.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help, or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story, or know of a compelling story, please send an email to david@21stcenturydads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics, who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.