Jessica Patay on Building Brave Communities for Caregivers

Debbie:
I have to fix my screen so that you’re right in the middle. Hey Jessica, welcome to the podcast.

Jessica Patay:
Hi, Debbie. It’s so good to be here.

Debbie:
Good to have you here. And I’m looking forward to sharing your vision, your mission, your passion, your work with my community. But I would really like to hear more of your story. I know your story because we’ve known each other for a while. But for listeners who aren’t familiar with your work and your organization and you as a human, would you tell us a little bit about who you are and why you do what you do?

Jessica Patay:
Yes, absolutely. I would say I’m a community builder. I just am so passionate about everybody having community, whether you’re a caregiver or just every human being. I want people to have a sense of belonging. I want people to have the benefit of life-giving friendships. And I really believe that the intersection of our lives is a gift when we leave. competition and cattiness and comparison behind that. We as humans have so much to offer each other. And when you’re a caregiver, as I am, I have a son with a rare genetic disorder who’s about to be 23, Ryan. I say Ryan is the one who made me a caregiver and I’ll circle back and explain his diagnosis. But as a caregiver, you are in an altered universe. And I call my journey altered motherhood. You’re thrust into something new and different when a diagnosis is delivered. And it is so helpful and it is so comforting to meet other mothers, other parents who are doing the same journey. Even if the diagnoses are vastly different, we share so many commonalities in the caretaking life. So I just want everyone to have community. You know, they say that smoking 15 cigarettes a day does the same amount of damage as chronic loneliness. And I don’t want that for anyone. don’t want that for anyone. 

Little more about me. I’ve been married to my husband, Chris, for decades. We just celebrated 29 years together. Been through it all and he’s still my rock and anchor and support and He’s wonderful. I’m very, very grateful. I wouldn’t be where I am today if I didn’t have Chris, who has just always been in it with me. He has been in the trenches with me. And I was a stay at home mom before I launched We Are Brave Together. I was a stay at home mom for 17 years. And he never made me feel like you got the kids and I go to work and I provide and I provide health insurance, whatever. He was in it. And I think because I felt like we were in an equal partnership from the beginning, it’s saved us. It really, really, really has. So I’m grateful to Chris. We have three gorgeous children. They are grown-ish. My oldest Luke is 25 and he just moved out about six months ago. So that is so weird and wonderful. And I get these wonderful text messages that I never got when he was in college. So it’s really a sweet season. And I know it’s tough for him. We’re in Southern California. He can barely pay his rent. But he’s learning. He’s figuring things out. And I’m really proud of him. And then Ryan is my second son. Like I said, he’s almost 23. He’s out of the school district. He did do an adult day program for about five months. And he was very successful at it mostly and then he had a big outburst which told us it wasn’t right and he didn’t feel safe there anymore. So we are in between and that is really rough. I think he’s a little sad and bored and we’re trying to figure it out. I’m happy to circle back to that and then I have a daughter Kate who is going to be 21 this summer and she is doing her own well I guess all my kids have had their own unique paths and She didn’t want to go to college after high school, but she might this fall, so we’ll see.

Debbie:
Okay, wow. It’s a lot going on and such interesting ages to to be at the you know, I think it’s just also good for parents to hear no matter how your child is wired or what’s happening that the parenting doesn’t stop when our kids, you know, reach this certain age.

Jessica Patay:
Very true, very true. And I thought, you know, Ryan was my only kid with, you know, extra needs, but both Luke and Kate were diagnosed with ADHD and anxiety in high school. So, you know, all my kids have their own challenges and their own beauty and parenting is hard.

Debbie:
Yeah, yes, it is. It is indeed. And I wanted to circle back to, first of all, thank you for sharing that. And I think that paints a really good picture of who you are and how you show up in the world. So thank you for that context. You talked about caregiving and motherhood. just can you explain the difference between those two terms for parents who may not kind of understand the distinction?

Jessica Patay:
And I started using caregiving mom, instead of saying special needs mom, we used to say special needs mom, but the disabled adult community has voiced that they don’t care for that language. And so we’ve shifted our language, I have shifted our language in our organization and just in the way I talk about. moms who have kids with high support needs or any extra needs or disabilities or diagnoses or neurodivergence, mental health struggles. When I say caregiving, it’s different than just parenting. And I don’t want to say just parenting because like I said, parenting is hard and challenging and, you know, it grows us up in so many tremendous, hard, beautiful ways. When your child has a diagnosis of any kind, medical struggles, psychological struggles, behavioral struggles, educational struggles, there’s a lot of extra care that you have to provide as a mom or as a dad. And it’s caretaking on top of parenting. You have medical appointments, you have social service appointments, you have IEPs or 504s, have specialist visits, therapies, OT-PT speech, and maybe licensed psychotherapy as well going on. It’s extra. It’s so, that’s how I went to find it.

Debbie:
That’s really helpful. And I appreciate you mentioning the special needs that, that language I was thinking of Emily Ladau, who we had on the podcast, she was something she said stays with me. She’s like, we all have special needs. My special need is I would like my feet rubbed while I’m having, you know, ice cream or something. But, and I just, that sticks with me every time now that I hear that phrase. but I, but we all do have unique needs in terms of how what will help us show up as best we can in any environment. So thank you for that. And then what I’d love for you to do as well is just tell us about your organization, We Are Brave Together. You said you’re a community builder. So tell us more about what you’ve created. I love meeting other women on a mission, which you clearly are.

Jessica Patay:
Yes, I am. I think I always will be till I’m holding great. I started We Are Brave together in 2017 with the mission to serve and support fellow moms, you know, like I said, we used to say special needs moms. We say caregiving moms now. I really care about the mental health of caregiving moms and I chose this particular lane. I think there’s so many things for our kids, but what about the primary caretakers, primary caregivers? So our mission is to preserve and protect the mental health of caregiving moms, you know, our elevator line. And what we offer to support that, to boost that, to give permission to moms to take care of their mental health. is we offer connection circles, which is what we call our support groups. We have them across the United States. We have virtual and in person. just are most recent when we launched as a medical mom, connection circle. It’s virtual and led by a wonderful coach and mom out of Sydney, Australia. And that’s open to everybody. We have topical ones, moms who have children with behavioral struggles. And then we have a lot of geographical ones by Los Angeles, San Diego, New York, Boston, by location. And we train our leaders in a very specific way. We have a team of mentors and your dear friend Margaret Webb is one of our mentors. So we have a team of mentors that support eight, nine, 10 leaders underneath them on a monthly basis so that we don’t just. trainer leaders and give them the manual and say, see you in a year, we provide ongoing support and training because all of our leaders are caregivers serving on top of, you know, their full lives. 

Secondly, we offer weekend retreats, and we subsidize to cover most of the costs. So we, I have a shameless asker, we fundraise heavily in many different ways to cover most of the cost to give a weekend of respite. and downtime and fun and mental health education with a coach or a therapist who guides us over the weekend. We started by offering those in Southern California and now we’re offering those across the United States. We’ve completed 43 retreats to date and we’ve offered over 200 scholarships, including the, we scholarship all of our leaders once or twice a year to a leadership retreat that we provide for them. So that’s why that number is so high. And then thirdly, we have the Brave Together podcast, which, you know, we know that there are moms who can’t get to a retreat, can’t get to a connection circle. So how do we inspire them? How do we inform them? We have story episodes, we have Ask Us Anything episodes where my co-hosts who are a coach and a licensed psychotherapist answer questions from the community. For example, we did one on what to do when your partner seems to be in denial about your child’s diagnosis? That was our most recent Ask Us Anything episode. We also bring experts on the show. We recently had a sleep expert who specializes in sleep with neurodivergent children and teens. And then our last offering is our books. I’m a lover of words. I’m a writer. I just love the power of words and I love giving my fellow moms an opportunity to share their stories and to use their voice and to use their stories to inspire others and validate others. In 2024, we published Becoming Brave Together, which is an anthology of caregiving stories, we really wanted to show the worth of caregivers and caregiving with the book and also to raise awareness about extreme caregiving. And I say extreme because there’s a vigilance with which we live. And we are on, on, on, whether your child has behaviors, you know, struggles with depression and anxiety or OCD or eating disorders, or your child has medical complexities and is medically fragile, there’s just an intensity that you live with. And so we wanted to validate that and share about that. And then our next book is Suddenly Brave Together and it is 30 letters from seasoned expert veteran moms of adult children. So the requirement to submit for book number two was that you had to be a mother of an adult child. So we have 29 others besides me who wrote letters kind of like what we needed to hear at the beginning of our journey. So although our intended audiences knew our newer moms. It’s definitely beneficial for all parents to read this book. And when we titled it, Suddenly Brave Together, because there’s a sudden shift when you get that diagnosis. You suddenly have to be brave and rise up. So we are so excited for this to be out in the world.

Debbie:
Yeah. Wow. Such an incredible thing that you have built. So I’m really curious about when you put this out into the world and we’ll get into your book. I want to talk about Suddenly Brave together for sure. And we’ll dive into that more, but I’m just so curious, you know, when you created this thing that didn’t exist because you felt such a need and I imagine it’s such a lonely experience, right? So how did you connect with people? Like, how did you kind of navigate that creating something that would so that like putting that beacon up, right? So people could find you. What was that like?

Jessica Patay:
Well, I think what helped is that I had started blogging in 2012 and I had been in some storytelling shows and I felt like I had a voice and a platform and I was active on social media. Not like a huge following or anything like that. I just was actively engaged and honest and vulnerable and people responded. And so, Social media has definitely helped, you know, something that helped us. I started We Are Brave Together here in Southern California where I’ve lived, where I’ve been in the community for a very long time. We’ve lived here for, you know, over 20 years. And so I just started with my community and people had never experienced anything like this where I live. And so it called to people. And so when we launched in my backyard and we had a party and I shared my dream and my vision, 60 people showed up. And then it just kind of grew from there. And that year of 2017, I had been sharing on social media, what if I created something? And it was already in the works. And I was just trying to get feelers out there and see who was interested. And people were really interested. And we started with probably an Excel spreadsheet of 100 names when we launched. And then we’ve grown to over 4,300, which, you know, it should be 10,000, 20,000, you know, just because I know the statistics that there’s so many moms all over the globe.

Debbie:
So I guess what I’m curious to know too is, of course, every journey is different for every parent. Everyone’s got their own things going on. But what are those kind of common through-lines that you’ve seen when a mother realizes that they’re not alone in this, when they find your community? What is that experience like?

Jessica Patay:
I say it’s really comforting. I think I know for me, I exhaled so much anxiety and fear because I had people to go to when I had my first mentor, when I found the support group within Ryan’s diagnosis, which is Prader-Willi syndrome. He was also later diagnosed with autism at age seven at UCLA. It’s just to know that you are not alone. is critical for all of us. And especially when you’ve been through something traumatic or an accident or a loss or a divorce or a diagnosis, you know, we need other people who understand, who understand the fear, the grief, the, you know, the fight for hope, the advocacy, the incredible love that you have for your child, but you’re also you’re also grieving what you thought family life was going to be like, what your child’s life was going to be like. And so when you’re surrounded by other people, it’s who are in similar circumstances, it’s very validating. and for me, I share this often, that, you know, I very much was why me, why Ryan, why us in the beginning of our journey, in the beginning of my journey, grappling with this. And over time by being in community, really helped me shift from why me to what now. What can I do with this? What can I do with this pain? What can I do with this unique story, this hard story, this challenging life? And it’s only because I was surrounded by people who validated my feelings, my emotions, my fears, my cyclical grief, that I could shift and not get stuck.

Debbie:
So I’m also curious what kind of systemic support exists. I mean, clearly you created this to fill a void. Anyone who’s navigating a diagnosis, whether it’s at birth or the result of an accident or just something that’s peeling back the layers of the onion as your child ages, there are obviously systems and specialists and experts that we’re dealing with all the time. I’m curious, especially for kids who have more complex medical needs, like, what kind of support exists at that level?

Jessica Patay:
That was a really good question. You know, every state is going to be different, every country is going to be different in terms of what supports are available. You know, moms who are needing nursing support, again, that varies state to state, whether, you know, they can get it through their insurance, they can get it through state. There, there are definitely medical mom, you know, groups, there are coaches specifically. for medical moms, like the one who is leading our medical mom connection circle. There are, I think, child life specialists who are very, very helpful when you are in the hospital often. And they’re social workers, of course. But it’s an intense life. So I can’t really speak. I don’t really even consider myself a medical mom, even though Ryan has a medically complex, rare disease, because what I deal with with Ryan is high anxiety and behaviors and the food seeking behavior, which is, you know, a big part of PWS. So I can’t necessarily speak for the medical mom community. I think now, medical moms have their own trauma and PTSD. You know, some have been gaslit by medical systems and that’s pretty rough. And some have found amazing, amazing doctors to support their child and their family. and you, you know, I think really, I, not so much anymore. Ryan had a lot of medical doctors in the beginning, pulmonology, urology, endocrinology, geneticists, you know, a lot the first few years. And then it sort of faded to just endocrinology and orthopedic doctor. had a spinal fusion in 2019. Thank God before the shutdown. You are the treatment team leader, you know, when you have lots of doctors and nurses as a part of your child’s team. And I just want to honor medical moms and what they encounter and what they grapple with daily.

Debbie:
OK, so the word brave, you’ve mentioned it before. It’s in the title of your organization and in your books. And so I’d love to know what it means to you and why that’s such an important anchor for your branding community.

Jessica Patay:
I say that being brave can be vast and large. It can also be in tiny, tiny moments. It can mean just showing up and advocating for your child in a doctor’s office or at school, which is not tiny. It could be, you know, Here’s a tiny act of bravery is getting up and taking care of your mental health in the morning and saying, I’m going to spend five minutes in meditation and I’m going to write in a gratitude journal or I’m going to practice self compassion. It’s. It’s not, it’s choosing to not numb out and go on autopilot, which is easy to do. It’s really understandable to do that. It’s, it’s, you know, I think we’re all allowed to have like little vices or whatever. And I joke that I’m a coffee addict. It’s not very harmful, but there are harmful paths that we could go down in our attempts to escape chronic hardship and choosing not to. Fighting against that is brave. I think it’s brave to acknowledge that you deserve to invest in your own mental health, that you deserve community, that you deserve breaks, that you deserve to ask for help. And our culture does not teach us to do that. And so we have to fight that and we have to be brave to do that.

Debbie:
Yeah, I mean, as you’re saying that I imagine that so many moms don’t consider themselves brave at all. Like they don’t feel that word relates to them or resonates in any way, or form. And then on top of that, you mentioned self-compassion, but on top of that is this continuous feeling like, you know, judging real feelings that we have and then feeling guilty and I shouldn’t feel this way and I should be doing more. I think that is just such an important, I love the way that you defined bravery. And I think it really requires, though, someone to soften enough to let that in and say, yeah, I can acknowledge that I am really showing up and I’m doing the best that I can. And that’s such a gift to yourself, but I imagine it’s hard to get there.

Jessica Patay:
Yes, it is. I think we don’t give ourselves enough credit. So I’m here to remind you that you deserve that credit, that you are brave, that you are strong, that you are resilient and you deserve a medal. Every day.

Debbie:
Yeah, every day. Yeah, every day. Yeah. OK, so you talked a little bit about your new book, Suddenly Brave Together, and it’s curated essays by adults who have adults, parents who have parent caregivers who have adult children. So I love that perspective. And I’m curious, how did you go about curating the essays? What was the process of actually pulling this book together?

Jessica Patay:
So we did a two-step process, which we won’t do next time because it was laborious, but also it was wonderful. So what we did was we said, just submit anything. We want to see if you can write. We wanted to see if we got a variety of moms, variety of locations, variety of diagnoses, variety of ages, right? So you had to have an adult child. The moms in the book represent kids. I say kids, but they’re adults now, ages 18 to 45. various diagnoses from all over the United States and one from a mom from Canada and a mom from Sri Lanka as well. So we probably had 100 submissions and of course most of those came at the very end. So I had a team reviewing with me and all the immediate yeses were yeses and we chose to have 30 thinking. that some might actually drop out because the next deadline was so short. We didn’t give like three or four months to write the piece. The reason I didn’t, we did it in two steps was I was really trying to protect the theme of the book, that we were writing a book for new or newer moms, that it was going to be like a dear younger me type of book. I wanted to protect that from the public. And so that is why it became a two step process. And so, but some of our writers had said they loved having their mentor. They loved that experience. So then we had our 30 writers and then we broke them up with mentors, writing mentors. And we said, here’s the prompt. This is what we’re looking for. This is what we want. And we want it written in this way. And so that was a back and forth process, you know. And I don’t know. I think it was like. a six week, seven week turn. It was pretty quick. And, and then we had our book. And then we came back together as a team to figure out what order, you know, it was, I had a group of people. So it was a pretty big undertaking. think next book will be another anthology of caregiving stories, a less laborious process, and maybe I’ll hire somebody to lead the project as well. but it’s, it’s just, it’s so beautiful to give women an opportunity to share their story and to use their voice. And it’s so empowering. And that’s what I want for my fellow moms.

Debbie:
Yeah, that was one of my questions because in reading your book, I of course was like, these stories are going to help any reader feel less alone and more seen. But I was wondering what, does it give to the writers themselves? You know, so, any, anything else that you would add, you just kind of talked about that a bit, but.

Jessica Patay:
I mean, you learn a lot by reflecting, right? These moms had to reflect, these writers had to reflect, they had to go back to the beginning and think about how they felt in the very beginning. I think, so, you know, I remember sending an email, I forgot how I titled it, but it was just like, it gets heavy. This gets really, really heavy. If you’re feeling heavy, let’s zoom together, let’s talk about where you’re at, anybody, you know, because it’s really heavy to go back and relive and recount. Whether that was, you know, they told the details of that or not in their letter, that was up to them. But it requires a lot of thinking and feeling and rehashing and reliving. But it’s also an opportunity to see how you’ve transformed what you’ve learned, because in the beginning, You just want somebody so badly to say, you will get through this. You will be so strong. You’re going to just astonish yourself at your strength and your resilience and your compassion. But in the beginning, you are so flooded with fear and I’m alone and nobody understands and I’m the only one and I don’t know how I’m going to do this and I’m not the right mom for this. can’t. Those are such intense feelings and fears in the beginning. And so it’s really a beautiful thing to see how you have grown and what you’ve learned the hard way, the easy way, whatever way. I think it can be really affirming.

Debbie:
And I love that you paired everyone with mentors. Like it just seems like a very supportive process. I know that I’ve worked on anthologies. I know what a labor of love it can be and a gift for anyone who gets to participate in it. So, okay, we’re going to wrap up, but I had. thought as I was preparing for this interview, because I know that We Are Brave Together has been around almost as long as Tilt has. I just celebrated my 10-year anniversary. And I invited people to answer three questions about that I’m going to pose to you. thought, I’m going to ask Jessica these questions and see what. And you’ve kind of touched upon some answers already in this conversation, but I’m still, I’m going to ask them anyway. So the first question that I asked is, For my community, was like, what have you seen change in the neurodiversity movement? So where has the most progress happened? So if I would pose that to you kind of zooming it out to your community, where have you seen the most change or growth or positive momentum?

Jessica Patay:
I think I just see a lot more communities definitely popping up and a lot more caregiver advocacy, which is great, which is really, really great. A lot more focus on care in media and film. There’s just, I feel like there’s a lot more voices out there for the caregiving community at large. And I’m so grateful.

Debbie:
Yeah, and you’re a part of that. Yeah, which is pretty incredible. So the second question I asked is how have you changed personally? You have, you just talked about how, how powerful it is for these moms to kind of look back on how they’ve grown. And you have touched upon this a bit. But if you really kind of think how have you changed the most as a person in the past 25 years, 23 years of being on this specific journey?

Jessica Patay:
I think I’m a little calmer these days than I used to be, but I still run anxious. I mean, so, so much, you know, I tell my kids, you know, who are very sweet and proud of me. I said, I wasn’t this as a kid, like I wasn’t a public speaker. I wasn’t, you know, running for student council. I, I just was a regular student, a regular person, you know, I, I, you know, I grew into this, um, over time, you know, and I, I gained confidence by doing and trying things and stepping out of my comfort zone and then, you know, seeing how beautiful things do work out when you pursue something that you’re genuinely authentically passionate about and that you care deeply about. I think, you know, I’ve become a shameless asker, I say, you know, as a fundraiser and I’ve let my passion override my fear of fundraising because I believe in our moms and I believe in what we’re doing and what we’re trying to do. And so that has definitely grown. I think I’m just a more compassionate, empathetic person than ever, know, ever, ever, you know, And yeah, there’s so many things I could say.

Debbie:
No, it’s a great answer. And what you said at the end is the most common answer that I heard from parents who I asked this question to was being a more compassionate person and how that has changed how they interact with everyone, how they show up as a human in the world. So I think that’s beautiful. Okay, my last question is, where do you see the most need moving forward? Like if you’re, you know, I don’t know if you see like, okay, we’re really doing a lot building community, but we still have so much work to do in this area or this domain, even if you’re not personally doing it your organization, like where do you see those gaps?

Jessica Patay:
Well, I mean, as an organization, we talk about reaching the unreachable. So how do we provide some mental health education to moms who will never come to a connection circle or a retreat? So, you know, I would love to be able to offer online, you know, with a therapist, like digestible mental health lessons, if you will. At large, I mean, If I could wave a magic wand, everyone would have respite caregivers that we could all pay well, or the state paid well or the country paid well, so that we can actually get quality caregivers, respite caregivers or care professionals, healthcare workers, nurses, whatever the families need. Because, like I said, parenting is hard anyways, and every parent deserves a break. and a weekend away and a night off, a date night, you know, and if you are a parent and a caregiver, you absolutely need help. And again, I’m very, very aware of my privilege and the fact that I have, you know, caregivers that have been with our family for 12, 10 and eight years. And that’s rare. And if I could provide that for everybody, I would. And then I would also say now that I’m in the adult stage of, now that Ryan’s exited the school district, I would like to see a lot more services and programs and supports and opportunities. And with Ryan’s diagnosis, Prader-Willi syndrome, there’s an insatiable food drive. So Ryan’s brain and body does not tell him that he has had any food. Ryan doesn’t say I’m hungry all day. Some kids and adults with the syndrome do, but Ryan doesn’t. But because of that food drive, he cannot work or volunteer around food. So I would like more vocational and volunteer opportunities that are, you know, for the disability community, for the disabled adult community to not be around food. He can’t work in a restaurant, he can’t work in a cute cafe, he can’t work in a grocery store. And while I appreciate all the cafes popping up here and there across the country, you know, with adults with disabilities working in those establishments, we need other ways to employ adults with disabilities.

Debbie:
Thanks for sharing that. It’s just such good insight and there is so much work to do. Yeah, there’s a lot of work to do and also a lot of hope and momentum. So, okay. Let’s just wrap this up with this question for a mom who’s listening right now and is feeling really alone. And first of all, she is really happy that they’re listening to this episode and like, okay. What would be the first thing that you would invite her to do, after she’s done listening to this.

Jessica Patay:
I would say go to our website, wearebravetogether.org and join us. Membership is free. Everything we offer is pretty much for free except for our retreats. And even with our retreats, we offer five scholarships. I would say find a connection circle, whether it’s just, you know, local to you or an online one that fits your schedule, because we’ve got lots of virtual offerings. Find it, jump in. Please jump into our secret Facebook group as well. It’s a great place to connect, ask questions, and share your story. And just remember that you are not alone. You don’t have to do this alone. And we are waiting to support you.

Debbie:
Yeah, that’s great. I love that you have a secret Facebook group too. I will have links in the show notes pages for all the resources for We Are Brave Together, for the new book, which is Suddenly Brave Together, for the first anthology, which is Becoming Brave Together. Becoming, right? Okay. Let me say that again. It sounds right. And for the first book, is Becoming Brave Together and Everywhere Else, that you can connect with Jessica. And I just want to say thank you. I’ve so enjoyed this conversation. Yeah, I just love what you’ve done and what you’re doing for people and as a fellow community wrangler, I know how important and powerful this work is. So thank you so much.

Jessica Patay:
Thank you. I love being with fellow movers and shakers and people who care so deeply about communities. So thanks, Debbie. I appreciate it.