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Autism Caregiving and Community with We Are Brave's Jessica Patay · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:01
  Speaker A: Hey everyone. Welcome back to the latest episode of the Inch Jones podcast. I have Jessica Fattei here today of the we are Brave community of caregivers and mothers aiding, building support communities across the country for the caregivers that sit in this wildly crazy, beautiful journey of special needs motherhood. Jessica and I were put in touch by our mutual friend, who also is on a autism motherhood journey herself. And when I met Jessica a few months ago, I guess the beginning before the turn of the year, it's wildly apparent to me that I get to do what I do in sharing and pushing along the Inch Jones mission because of women and mothers like Jessica for what they built before I did. So, Jessica, thank you so much for being here today.
• 0:47
  Speaker B: Thank you. What a wonderful way to introduce and set this up. Thank you, Sarah. That was very lovely.
• 0:54
  Speaker A: I mean, you know, I like to dive right in, you know, can you share that personal story and what led you into this special needs autism community? We are brave together.
• 1:05
  Speaker B: Sure, sure. So my second son, Ryan, was diagnosed at 5 weeks of age with a rare genetic disorder called Prader Willi syndrome. And he's the one who made me a caregiver. He's the one who is helping me recover from perfectionism. He is the greatest teacher as, as are all my kids. I have three kids. I've been married to Chris for, for decades. And we have a 25 year old Luke. We have Ryan, who has Prader Willi syndrome, who's 22, almost 23, and our daughter Kate, who is 20 early on in our journey, I mean, frankly, we were so scared when we got the diagnosis. Nobody around us had children with disabilities or medical diagnoses or anything. I had one friend across the country who had a daughter with severe, profound autism. She was across the country. So I had nobody in my world, nobody in my family. And my husband and I jumped right into support groups and conferences and education and training all around Ryan's diagnosis. So early on it was very clear how important it was to have a mentor and to have community people in similar circumstances that get it, that get you and can validate your wondering and your what ifs and your worries and your angry days and your resentful days and your beautiful days, all of it. And so that just was further, further confirmed in me how we all need community. And I thought, eventually, what if I create something and moms can just show up, they're exhausted, they're isolated, they're overstimulated, they're over scheduled. What if I just create something and can show up and know that they're in an authentic, supportive, loving, validating community.
• 3:06
  Speaker A: Well, it's not lost on me. And I know the majority of mothers and caregivers that are in the listening community here. There is no price tag for the luxury of being able to walk into a room knowing that every bit of you on your journey is validated and understood in some capacity. And I think that's one of the most primal, beautiful ways that women connect. And they're what I call a life luxury. Right. We all wish and would, if you knew that what that feeling would provide for you in moving forward. As I always say, like, making that next right choice comes because of moments where you feel seen and heard as a woman and mother, specifically in situations like the children that we're raising.
• 3:47
  Speaker B: Yes. I wish we could bottle it up a little bit and sell it to them ahead of time, because moms are so afraid to get together with other moms because they think it's just gonna make them more sad, that it's gonna bring the reality of the diagnosis, disability, lifelong caregiving, just weigh them down. And, yes. When we share our stories, can it be heavy? Of course it can be heavy. But there's a way to protect our hearts. We can walk into a support group, a connection, circle a meeting and say, I have a big, beautiful heart and I don't have to take on everyone's pain. There's a way to guard yourself before entering that and be open, be willing to share, be willing to be an encourager and validator and have your story validated and supported. So I just wish there was a way, like, if you just.
• 4:46
  Speaker A: I know. I wish we could take something for that, but I think you. I mean, you hit on something that I don't think is. Is spoken out loud and you verbalized it so beautifully, is that there is fear of taking on as deeply emotive caregivers and mothers the pain of others that are walking alongside us. And I think that containment is so powerful in the most appropriate ways, where sharing actually will free you from that. I think. I think the more in which you do it, it actually has a counter effect. The fear is that you're gonna carry it all. The reality is that it actually probably dissipates and dissolves that fear. Or once you're in the room doing the work.
• 5:27
  Speaker B: Yes, yes. And the other thing that we think is we're so afraid to feel our feelings, we're going to be forced to feel our feelings when we get those things, which, yeah, it's true. We hide in our busyness and our over scheduling. And we numb away the grief and the fear and the worry by just being busy and busy and busy when you get there and you do feel your feelings, so many moms will say, I'm so sorry. I'm so sorry as they start to cry and we pass around the tissues and. And we are brave together. We don't apologize for our tears or our anger or our resentment. Like you're allowed to feel all your feelings. But research tells us that we heal only by feeling our feelings. We're only more energized when we actually emote and express and get it out of our bodies.
• 6:13
  Speaker A: Right? Right. I mean, that's the beautiful part about tears. And that's what I like to call just the self baptism. Right. There's a reason why it's salt water pouring out of your eyes just like the sea. Right.
• 6:24
  Speaker B: Well, I like that.
• 6:24
  Speaker A: We could talk forever about the things that, you know, we are brave together does in the circles around the country and the retreats. What I wanna ask you about is. Is your latest, and I believe this is your second book, correct?
• 6:36
  Speaker B: It is.
• 6:36
  Speaker A: This is number two. And this is. This is. This is suddenly brave together. And it is really letters to caregiving moms that have these defining moments in their lives that radically change what you might have thought that journey was gonna look like. And I'd love for you to share more about kind of the reason why this came to be and why you knew that this had to be printed and put into life.
• 7:00
  Speaker B: Thank you. Well, we all remember that moment where before the diagnosis and after the diagnosis, and I say, you know, our worlds shift completely on its axis when a diagnosis is delivered, and not always is a diagnosis delivered with loving kindness and compassion. It can often be delivered with doom and Glo.
• 7:22
  Speaker A: Yeah.
• 7:22
  Speaker B: And I still. I can still see that night that our pediatrician called. And I'll never, ever, ever forget it. I remember how alone I felt in the beginning, how I felt so different. Nobody else is going through this. I feel so alone. But once I had a mentor and once I attended my first support group and I realized I'm not actually alone. There are people I can reach out to. There are people who are here to support me and comfort me and answer all my questions. It's just so scary. When a diagnosis is delivered, you go into worry mode, fear mode, wondering the what ifs. You don't know how it's gonna play out. Like you don't know, okay, here's this diagnosis. There's a spectrum of this diagnosis, whatever it is, and don't know where your child's gonna land. And you so badly wanna do everything and anything possible for your child. And yes, I agreed. Let's do all the interventions. Ryan, you know, saw so many specialists his first few years of life. Should have counted how many appointments we had then we had O T P T and speech therapies at home. The first three years, it just so much. And yes, we have to do all of those things to help our children, support our children, help them get to Inchstones or milestones, you know, whatever it is. But we also have to radically accept where, where they land, where they're going to land in their life along the way. I mean, it's kind of a process of ongoing radical acceptance.
• 8:53
  Speaker A: It is. And that's something that I just going to. Radical acceptance is such a through line for me because as you talk about all the feelings and all the emotions, I kept reminding myself and I and I hear you saying this to those that you are in community with as well and build in your platform. I always remember thinking, I woke up again. Like, how did I. It was this juxtaposition of like, I can't survive this. There's not a chance. How am I gonna survive this? There's no way I can keep doing this. And yet I'd wake up and I, I'm a sunrise lover and I'd see the sun and go, I get to do this again. I don't have to do this. I'm not walking through pain. Like, I get to keep doing this. Like I'm breathing, I'm waking up, I get to open my eyes, I have a voice. And you get really conscious about the power of now and the power of the next right thing. And I think that's what you're about. All this is that it? It's so overwhelming. And yet here we are, another day.
• 9:53
  Speaker B: I I, well, with our first book becoming great together, it was really, it's just a book of caregiving stories. Different caregivers from, you know, representing different diagnoses and ages of children, 22 stories. And you know, it was really to shout the worth of caregivers and caregiving and to raise awareness about extreme caregiving. The purpose of Suddenly Brave together is really like community in the pages of a book. It is a mentor. It is somebody reaching across through the book with a hand saying, you are not alone. And I've journeyed this. So the book specifically is written by moms of adult children. So these are moms who are seasoned experts, savvy, share their wisdom, share their experience, their own personal transformations, the highs and lows. Again, I'm all about honesty and vulnerability and being raw. And this book is that too, just like book number one. So it's 30 letters from seasoned moms sharing with newer moms, younger moms, moms new to a diagnosis and are grappling with that. I think all parent caregivers benefit from the book for sure. But the intent and the vision behind this book was to reach, you know, to.
• 11:12
  Speaker A: Well, as someone who. I mean, I. I'm a. I don't listen to a ton of podcasts, but one of my favorite ones is Wiser Than Me by Julia Louis Dreyfus. Because she's like, I don't want people that are my going through this with me. I want to hear those survivor stories. I want to hear the women that have come before in any capacity. And that feeds my soul too. And like these kind of stories of women and mothers who even just one or two years and then five years and then 10, and you absorb the heart of the tenacity of that vulnerability of that removal of shame through the process that you can do this. You get to do this. That finding support is nothing to feel like as a weakness. It's actually a real strength and will fill your cup so deeply when you do, you know, and you said too, this is for all women and all caregivers as well. Cause I think it's universal. But obviously the need niche and the. And the intent is to women and mothers with special needs children.
• 12:11
  Speaker B: Well, let's just all say together collectively that parenting is hard. It's hard. Parenting is hard.
• 12:18
  Speaker A: We were sold something different in the 90s, though, man. We were sold something different.
• 12:22
  Speaker B: We were sold something different. But, and, And I remember years ago when I was talking about how parenting was hard and somebody challenged me on Facebook, like, do not know my life. I mean, you're a parent. Parenting is hard. It's hard because we care. It's hard because we care how we are doing as parents, how our kids are doing. What are we getting right? What are we getting wrong? What are we doing horribly wrong? Right? We care about our children. And I think what appeals in this book is for anyone is that we all have a moment where we think, I can't do this. I was not meant for this. I'm not patient or I'm not organized or I'm not savvy, or I, you know, I'm just. I'm not the right mom for this kid, whether they have high support needs or none, parenting is challenging. We are always having to learn. We're always really having to learn how to take care of ourselves. But nobody talks about that. It gives you permission to take care of your own mental health and realize there's so much that you brought into parenting from your own childhood, your own anxiety, your own stories that do inform the way you parent. What's an example?
• 13:39
  Speaker A: I give this example a lot. I can, I can share with you. I grew up in a family that we did not, I did not come from, like, from very humble beginnings. But my parents really focused on travel. Like we traveled. My parents were teachers, educators when we were traveling the world on a real budget and staying in hostels in Germany when I was in 10th grade, yet we were in Europe. And for me, that's ingrained in me. So guess what? We travel, we go. And it was regardless of my children's diagnoses and their sensory needs, we get out there and we travel. And I know that that's not baked into everyone and that's okay, but for me, that was modeled and that's deeply part of my childhood. That, yeah, there's modifications, there's massive modifications, but we still do that. So maybe that's an example of that.
• 14:26
  Speaker B: No, that's great. That's a really great example. I think another way that this book really connects is just emphasizing the power and importance of community. Because all of us are living in this isolation pandemic and we think we're so connected because of social media. I know we're not seeing each other's faces and hearing each other's voices. A FaceTime call, a Marco Polo, a video. And to your thread every week, which I do with two groups of friends, we send a video every week. Doing this now for years.
• 14:58
  Speaker A: Love it.
• 15:00
  Speaker B: That is a boost to your mental health. And we need to come together in person. We need to see each other physically. The over scheduling and the achievement culture and all of that really doesn't lend itself to necessarily coming together. I mean, maybe if your kids are in activities or teams or clubs or things like that, or with other parents, but otherwise you can live a very isolated life as a parent. And it's, it's not good for us. It's not good for us. If the pandemic taught us anything. We are not meant to live, love, work, learn or caretake in isolation. In isolation.
• 15:40
  Speaker A: Right. And there's, like you said there, there are studies that back that like the, our, our brain, we get those, those positive neurotransmitters from those connective points. Maybe the only positive is that, you know, we do do these zooms and that those of us that maybe have more limitations on the physical ability to get out of the house with our children, at least there's this that, that allows for the, the forward facing and video, you know, interactions. But you're, you're absolutely right. We were wired for this. And even for the most. What's the word I'm looking for, like humbling of diagnoses, it doesn't change the innate desire of being a human and especially a mother. And we are, we are wired. I mean, you look at any mammal, right? Like the tending and befriending of the, of the females. I think it's one of the most beautiful things. I, I was talking to someone recently about how she told me this, that when a mother elephant gives birth, the other female elephants like huddle around her afterwards. I said, and then I just happened to like pass like a Milly little Claire's boutique in my town. And there were like elephant earrings. And I was like, gosh, I should get some elephant earrings to remind me. Because, like, it's so true. Like, this is innate. This is what women, we do so well, yet we. Great. We create unnecessary friction to the things that we are wired so beautifully to do. And I think that, you know, what you, what you are all doing and being such a beautiful catalyst to those innate intuitive processes of women and mothers and caregivers is so profound.
• 17:13
  Speaker B: Thank you. Thank you. Something too, you know, while I say that, you know, our organization is also always thinking about what about the moms who are unreachable? What about even if we had a connection circle in every city, you know, across the world and, and we offered retreats in every city across the world, there are moms who can't leave their lives. They don't have the help. Their children are too fragile, whether psychologically, behaviorally, or, you know, medically fragile that they cannot leave or they don't have the support to able to engage in, you know, those offerings. How do we reach the book? The book is giving you a sense of community and a sense of belonging and a sense of validation. And I see you, I support you, I'm here for you. And so that is, you know, also what I hope for this book, that it gets into the hands of moms that are so isolated, that aren't able to jump into, you know, groups, meetings, retreats or whatever. Yeah, whatever it is. Whether it's us that's offering or Any other organization. I'm always thinking about that, Mom.
• 18:18
  Speaker A: Yeah, well, I mean, it's so true in that even in the moments where you think you're so isolated, there are ways to connect. And that is even in taking the stories and fellow caregiver, you know, like chapters like this. Because what a beautiful reminder that even in your darkest depths of despair or isolation or inability to get out, you become transformed by the gratitude of even hearing the story of another. And I think that again, what a gift reading is in general. It's, you know, I think. Did we just finished national Reading Month here across the nation that Dr. Seuss? I don't remember.
• 18:54
  Speaker B: That's right.
• 18:55
  Speaker A: But I was, I was. I always find that to be such a powerful reminder of what reading gives to you and it can give community. I love that mindset shift. It doesn't have to be fully engaged one on one. It can be through stories. Jessica, tell us more about how beyond the book, beyond what you can take away from both, both books of yours, how can people get involved in the retreats and the circles around the country?
• 19:21
  Speaker B: So one, just make sure you join us. We are ravetogether.org Membership is free. Almost everything we offer is for free except for our retreats, but we subsidize heavily. Our four offerings are connection circles, which is what we call our, our support groups. You, you can go on the website under gatherings and look under virtual or in person and see where we are at. Have about 30 connection circles now.
• 19:47
  Speaker A: Amazing across the country.
• 19:49
  Speaker B: Our retreats, we started off in Southern California, but we have those across the country now. Our goal is to get to each region of the country and have two or three retreats in those regions per year, like maybe up to 15. We're up to about 8, 10 retreats per year right now. Again, if you're a member of We Are Brave Together, you're going to get our emails about our retreats. You know, you'll be able to find out more, find out our policies and procedures. What a retreat looks like is you show up on a Friday afternoon and check in to the retreat home and we have snacks waiting for you, we have a goodie bag waiting for you. And then we do an opening intro session where everyone just gets to share their story in about a minute. And then we break for dinner. We have some get to know you games and times together and then free time on Saturday. There's a couple of sessions led by our retreat speaker, who's usually a coach or a therapist. And it's all intended for mental health education. I mean, when do we stop and pause and think about how we are doing actually for a weekend? And then how can we get some practical tools to take back to our everyday life? We try to balance group time with hangout time and rest time. And then we check out on Sunday. We have a final wrap up session on Sunday and check out by 11. We have. We are now offering five scholarships per retreat and we only charge 350 for two nights housing, five meals, unlimited snacks and a goodie bag and speaker sessions. Again, we just are relentlessly fundraising, shamelessly fundraising so that we can make these weekends accessible for moms.
• 21:25
  Speaker A: That's phenomenal. You know, as you look ahead, what is your hope for how this community of mothers continues to grow and support because you have a massive plate and so much going on. What is your vision for this? What do you see it looking like and evolving into in the future?
• 21:42
  Speaker B: Well, I definitely see expansion. I would also like to do retreats abroad and I think, you know, we'll get there. We have had some connection circles abroad. I'd like to have more for sure. Um, and you know, I just want more and more offerings for moms who are stuck at home and can't get to a retreat, can't get to a connection circle. What can we do to really fill their bucket or educate or empower them in a way that they can apply to their everyday life. You know, I definitely want more books. I would love a book with dads, moms and siblings contributing caregiver stories. I think that would be amazing. I think we need to get the dad voice in there. I think the sibling voice is really important. I do. We are doing our very first couples retreat this year. I would love to see that continue. And again though, I know that that's going to be for a privileged few couples who actually have help for both parents to be able to get away. So that, that's like a little ouchy, you know, because I don't want to be the truth, but that is the truth. Mm. So I do hope that that takes off. And you know, we've, we've tried getting dads involved, but it's, I don't think the dads really, really know how much they need it until they show up.
• 23:03
  Speaker A: Well, there's such a different again. I, I, I wish I could go back and get like if time were not a thing, right. And it was just a free commodity that I had at all times to go back and get a PhD in like evolutionary biology. Because the way in which dads process anything in parenthood is so wildly different as it should be. Right. There's a polarity to mothers and fathers in so many different ways. And I think I am, I don't know if I guess my algorithm is leaning towards this. I am seeing more and more as I like to call it, the dadvocates, you know, that are, that are sharing more and more. And I think that but the roots of their processing and the pain and the grief and everything is so different than how women than the moms do. And I don't think that's a bad thing. I think it's a real reminder that there's something universal about when life hands you such a truly lifelong life altering scenario through a beautiful child that's here on earth with you. And I think that like you said, the radical acceptance, it does look different for dads. It really does.
• 24:05
  Speaker B: It does. Also when I think about the, our dream about the future, I'd really love to have an arm of we are brave to get into advocacy just because we don't have the services and the supports and systems that we need in this country. Yeah, we don't. We don't.
• 24:27
  Speaker A: That's something that is my like one of my most largest illuminating missions for inch zones is that because at the end of the day these one on one connections and support groups are the reason why we can actually begin to challenge the systems and say wait a second, how are we able to not become a vacuum and just keep going around in circles when obviously there's a lot of pain attached to what's not being supported? You know, what do you. I know it really is, there's federal, there's state by state, but you know, I always hope that there's just more respite care provided for the most profoundly affected families. Because as you mentioned before too like nervous system regulation is not just for the child. And I believe as mothers we are the core of the home nervous system. Right. So if we're not regulated and we're in such hyper vigilant constant systemic stress about truly the live in the caregiving role, we need to talk about that on a systemic level and what respite can do to balance that out.
• 25:35
  Speaker B: We do. I wouldn't be here today if we hadn't had respite caregivers for the last, you know, 12 years and even before that there is no way, you know, when, when I talk about, you know, true self care and fighting burnout to prevent burnout and compassion fatigue, that's all well and Good. But the systems are rigged, so it's, you know, if you don't have respite, if you don't have a way to take a break, and I don't mean a break so you can go do laundry. I mean a break so you can go do something that lights you up, you know, or brings you pe.
• 26:13
  Speaker A: Yeah. Rested for laundry. Can feel hopeless. Respite for an hour to go take a watercoloring class at your local community center. That's different. Right? Like that. That. That. That. That's. That's what I think that you and I are sympathetic on. That's what true respite is, is allowing for the caregiver to know that their soul gets to feel nurtured and movement and. And it's not. Yeah. It's not just to call the insurance company and hang on the phone for 30 minutes while you're booking the next procedure.
• 26:46
  Speaker B: Exactly. If I. If I could wave a magic wand, there would be respite care across the world. Really? Not just across the country.
• 26:54
  Speaker A: Yeah, across the globe.
• 26:55
  Speaker B: Wherever offers that. Where they pay really well so that you can actually draw, you know, highly qualified or people who want to be highly trained. I would make it so that every mom or dad who is really needed to stay home to take care of their child, that they get paid a living wage to be that primary caregiver. Every state, every country, those are the two that I would start with. And then, not to mention just greater programs and opportunities for adults with disabilities. Absolutely. Let's just add one more thing. No more stigma around disability and neurodivergence.
• 27:37
  Speaker A: No, no. We are. We are supposed to, like, these are all, you know, label identity politics, all these things. At the end of the day, we are humans in a human world with humany traits of community and desires and whip femininity and masculinity and all these divine things that are so humany. Let's just embrace that for the positive. Jessica, I'm so grateful for the work that you're doing that you have done already. You should be so proud of what you built. I'm so thankful that I've even come into your presence and learn about the honesty that you bring to this space. Because it really is something that many mothers, specifically mothers of children with any sort of special needs or diagnoses are quietly searching for. And the more in which we can have conversations like this, it allows us to be discoverable in a way to make them feel like, oh, that quiet pang has a solution for me out there. And there's women that are creating spaces for that. So I'm so thankful for what you've done and how you're growing. We Are Brave Together and I will be putting all of your details on the episode summary as well as links to where you can buy both the books, but specifically for the most recent book and Suddenly Brave Together but becoming Brave together as well. And the link to get it all your is chock full. I could spend a whole day planning out my own, my own like, you know, like support and where we can go and how just it even feels good to go through your website, Jessica. It made me feel less alone even on the landing page. So if that's any, if that's any support for what you're doing, even the landing page gave me peace. So thank you.
• 29:22
  Speaker B: Thank you. That's so, so wonderful to hear. Cause you know when you're in the thick of it, you don't see it anymore. So thank you for saying that.
• 29:30
  Speaker A: Of course. You are doing such great work. And to everyone listening again, we'll put all of Jessica and We Are Brave Together's details on the episode summary. And until next time, here on the Insurance podcast,