Latest / Complex Kids, Simple Solutions / Youre Not Meant to Go It Alone: Jessica Patay

Transcript

Youre Not Meant to Go It Alone: Jessica Patay · Complex Kids, Simple Solutions

• Michelle Choairy: Hi everyone, we're so excited. I cannot tell you. I just I just had this whole thing with her, but I'm gonna do it again. I'm so excited to have Jessica on this podcast today. I like I told her, like I read her emails that her newsletters that she sends out. I actually tried to go on one of the retreats and things didn't quite work out. And I mean, I cannot say enough about this woman. So And you guys are gonna learn about her today and you're gonna hear how amazing she is. Welcome. Jessica Patay: Josh Michelle, what a generous intro. Thank you so, so Michelle Choairy: Ha ha. Jessica Patay: much. I appreciate it. Michelle Choairy: Yes, I when I got the email, I was like, my gosh, I get to interview her. This is so exciting. Anyway, tell so I don't know. I think that the majority of the moms that listen to me might know who you are. But if you don't, you need to get to know this woman. So tell us how you started this whole amazing Jessica Patay: Shall you froze? Michelle Choairy: We are brave together thing and how you've got what forty five hundred women signed under signed up or I think that that's the last number I heard. Jessica Patay: Yes, we are at over forty five hundred moms globally. We represent all fifty states and about thirty other countries with our membership. Michelle Choairy: It's amazing. And you know, were a mom just like all of us probably who are listening to this and look what you've made for us, right? You like paved the road for us. So tell us how that was like, because you know, you start you're dealing with all of these things, right? You you find out That you have a son or a daughter and things are starting to be, they're starting to get delays, or maybe you already know when they're born. But you, you just start that process and then to become of where you are and who you are and who you've become. Tell us a little bit about that road. Jessica Patay: Thank you, thank you. So I I've been a mom for twenty six years almost, and I have I have three kids, Luke, Ryan and Kate. I say Ryan is the one that made me a caregiver. He is now twenty-three. When he was born, he couldn't cry, couldn't hardly move, he couldn't suck, and he had trouble breathing, and we spent a month in the hospital not knowing. And at about five weeks of age he was diagnosed with Protter Willie syndrome. And then later at age seven with autism. And PWS is a rare disease. I always say there's no cocktail party explanation in just three minutes to tell you what it is. But the early years, because of being born with hypotonia or low muscle tone, all your milestones are delayed. So Ryan had a feeding tube, he didn't walk till he was three. Eventually he caught up on his milestones. He had OTPT speech. pretty much all the way through junior high and some of it through high school and the transition program. if PWS makes the news, it's because there's this really crazy feature where kids and adults do not have any satiety signals in their brain, in their body. And so they become food seeking, food obsessed, because they never feel full. They never feel satisfied. And food is like air to them. And this food drive can hit in childhood for Ryan it was definitely a slow burn until he was thirteen when we then had to lock our fridge and lock the pantry because otherwise it is life threatening. If kids and adults do not have a food schedule and they don't have a supervised and locked kitchen, they they can eat themselves into medical emergencies. So it it is a feature that I feel like we have under control, but it definitely rules our life. We don't do family trips, we don't go to restaurants as a family. for example, my daughter turned twenty one last week and I got a caregiver for Ryan so the rest of us could go out to eat because otherwise it becomes about him managing him, managing his anxiety or behaviors. He gets very anxious at a restaurant, especially when we're all together. One on one is very different. I still don't enjoy Michelle Choairy: Mm-hmm. Jessica Patay: taking him to a restaurant, but he's more manageable. I think just the collective anxiety of the family, knowing that bringing him to a restaurant is really tricky. it Michelle Choairy: Mm-hmm. Jessica Patay: just it just makes for a very unpleasant experience. And you know, Michelle Choairy: Uh-huh. Jessica Patay: I wanted to focus on Kate. It was her birthday. So we Michelle Choairy: Yes. Jessica Patay: we left him behind. other Michelle Choairy: Yeah. Jessica Patay: ways that it gets in the way, he's now an adult. He, applies to adult programming, but if they have open kitchens, if he knows that they have an open kitchen, if in most places because of licensing, you they cannot lock up their kitchen. But if it's a kitchen maybe down the hall with a door that shuts, that might work. But he still might be completely preoccupied that it's an unlocked kitchen, even if he doesn't attempt to take anything. So Michelle Choairy: Mm-hmm. Jessica Patay: The food piece, you know, is very tricky. Very tricky. It's not like an another way that it shows up in our life today is, you know, if he has we call his caregivers now coaches because he's 23. We had to replace all our long term caregivers with guys because Ryan wants guys. He wants guys that are active and are gonna do sports and get him out in the community and so often they'll say, Well, what if we're out and it's dinner time? You know, typically Michelle Choairy: Hmm. Jessica Patay: in a typical situation, they would just go pick up food, right? I'd give them extra money. But with Ryan, you Michelle Choairy: Mm-hmm. Jessica Patay: can't do that because then it becomes law that every time he's with that coach and they're out for snack or dinner, that he gets to eat out. No way. We cannot set that up. We just can't set that Michelle Choairy: Mm. Yeah. Jessica Patay: up because it leads to anxiety and behaviors. So It's a really crazy feature of Prader Willie Syndrome. Ryan is intellectually disabled, but he's also extremely compassionate and loving and intuitive. So even though there are struggles there, and he has struggles to understand and he'll never get money, he's he's so intuitive and he's so loving, and he doesn't forget people's stories. And so he's he's remarkable and a ball of anxiety. Michelle Choairy: Yes. Jessica Patay: And he's the one who made me a caregiver. And so that thrust me into this alternate universe where I found that community, which I've always been a fan and a and a proponent of community. It really, really cemented in me how important it is for all of us parents, all of us moms, to have people in our life that really get our circumstances and get what we're experiencing. Michelle Choairy: Yeah, that is okay, you've touched in s on so many levels right there that I kinda wanna go back and address some of those things. So one of the biggest things, so my son, just I think my audience knows, but my son has a rare genetic disorder. It's called TBR1. It doesn't even have a name yet. He Jessica Patay: Mm-hmm. Michelle Choairy: is one out of about a about two hundred and some. I think we're at 230 or 240 right now in the world. So we don't know much about it at all. We just know that there's behaviors. There are Drake was number 42 or something like that in the world when this when we found this out. But a lot of the things that you were talking about applied to our life. it it has to be about my daughter on her birthday. It cannot be about him. Jessica Patay: Mm-hmm. Right. Michelle Choairy: on her birthday. And you know, how us parents, when we are in this caregiving situation, right? When we are mothers of children who need I I call them complex. I like them call my kid is a little bit more complex than yours. It's kind of how Jessica Patay: Right. Michelle Choairy: I address them, right? But you know, when we have these complex kids in our lives, we do have to adjust and we do have to make decisions that a lot of times are really hard. I can't imagine saying, no, you I gotta lock all the food in the house and I have to have a code and I'm the only one that has the code. You know, I can't even imagine that. But at the same time, I do know that anything some things trigger my son. he can really think of the same things over and over and over again. And if we keep saying no and he keeps asking and asking and asking, this is going to lead into a, you know, a behavior. And so we really need to kind of get him out of that situation, try to change that a little bit and see how that, you know, how we can get him away from that. And so mine is only 12. and so it's a little different than yours, and he's still growing, but as they grow Jessica Patay: Mm-hmm. Michelle Choairy: older and they grow up, they get stronger. They get, you know, they they do learn. And that compassion that you're talking about him, it's the same thing with my son. He remembers everybody's stories. He remembers Jessica Patay: Mm-hmm. Michelle Choairy: where he met you. He remembers like he will be walking down the street and he'll see somebody. she was in my camp back when it blah blah blah. And I'm like, my gosh, how do you even remember these things? So our kids, they have these gifts and and they do, they do have these gifts, but we do have to learn how to in a way, quote unquote quote, control that. And Jessica Patay: Mm-hmm. Michelle Choairy: and so anyway, I hats off to you for really focusing on your daughter on her birthday because We get sucked in by the madness sometimes, right? Yeah. Jessica Patay: Mm-hmm. We do. We do. And it's important to find those ways to focus on other kids. If you have other kids, they really need their one-on-one time. They need their time as a family without the sibling with a disability so that they can just have time and energy and focus police on them. Michelle Choairy: Yes, for sure. There's no doubt. So I want to know when it was that you were sitting there and you said, I am going to build a community. How did that come to you? Jessica Patay: Well, I think really when I started blogging back when blogging was more of a thing in two thousand twelve, it really gave me a voice. I started sharing very honest, raw, vulnerable stories from motherhood and mainly about Ryan. And I was very empowered by people's messages and validation and thank you for saying what I feel, but I'm so afraid to say out loud. Thank you. I feel so seen. By you, sharing all these truths. the vlog was called Confetti and Confessions, Truth Telling in Motherhood. And so Michelle Choairy: Love that. Jessica Patay: that really gave me a strength and it it felt like I had a really strong voice. And then my best friend and I started doing these weekend retreats for friends and friends of friends. And one day we turned to each other when we were in Nashville running a retreat, and we said, well. This is all well and good. And we weren't making money. In fact, we were probably losing money. it was just Michelle Choairy: Mm-hmm. Jessica Patay: a really fun venture because we believed in community and and getting women together. And Michelle Choairy: Mm-hmm. Jessica Patay: we said, you know, what what if we turn this into something where moms with complex, you know, kids with complex needs, you know, back then we said special needs moms. Michelle Choairy: huh. Jessica Patay: if they could get a break, who needs a break? Michelle Choairy: Mm-hmm. Jessica Patay: But Moms who are caring extra, parenting plus caregiving. So the idea was birth, the name was birth in 2016. And then I went on to to found it in 2017. So I just knew I wanted to gather. I knew I wanted to bring women together. I knew that there was a need for sure. I know that moms are tired, exhausted, overstimulated, overscheduled. So if I created a community where they could just show up. online or in person, then maybe they would feel less alone, less isolated, Michelle Choairy: huh. Jessica Patay: more seen, more heard, more understood. And so we launched with the intent to really preserve and protect the mental health and social health of caregiving moms. And we started with one low-cost retreat per year and support groups here where I live in Los Angeles. And then we've grown to offer support groups across the country. virtual and in person and retreats across the country. We also added the podcast, Michelle Choairy: Uh-huh. Jessica Patay: Brave Together podcast, which you mentioned earlier in twenty Michelle Choairy: Yes. Jessica Patay: twenty. And then we've released two books, one in twenty twenty four and one this year. Michelle Choairy: So I do have the books and one of the moms that helped to on the first book also has a daughter with TBR1 and I was very, very grateful to meet her one year. I actu I live in Orange County, so we actually brought in all of the Southern California TBR1 kiddos, and we came over to my house, and I realized because my son He he doesn't have a a physical disability, if you can say Jessica Patay: Mm-hmm. Michelle Choairy: it that way. And so we were so not prepared. And I felt so bad for the moms that had, you know, wheelchairs and and we just were not prepared for that. And and that was in my, you know, on on me, because just come to Jessica Patay: Mm-hmm. Michelle Choairy: my house and we're gonna figure this out, right? And there were about to say six of us that were here and it really but it was such a good event just talking to each other, kind of trying to understand what it is that we are going through with our kids. And Jessica Patay: Mm-hmm. Michelle Choairy: one of the things that I have noticed is that the diagnosis are coming earlier and earlier. And so there were quite a few kids here that they were one was a baby. he was only, I think, I don't know, not even a year old. the other ones were just a couple of years old. My son at the time, I think he was nine or ten. And there is a spectrum whenever you're talking about genetic disorders, right? And so there was that spectrum that we saw. And it was in a way, like it gave us hope. It gave some of Jessica Patay: Mm-hmm. Michelle Choairy: us hope. And in a way, it gave us it made us feel good for being able to share what we Jessica Patay: Mm. Michelle Choairy: have done through the years. And that is exactly what you're doing, right? You're bringing these mothers together. You are having Jessica Patay: Mm-hmm. Michelle Choairy: these if you know events on the weekend. And I was so upset. It was my job. And it was the one in, I think it was Palm Springs. And I wanted to go so bad. And I got put on the WhatsApp. list and they were talking and they still talked to each other and I was not there and I was so sad that I missed it. So I have Jessica Patay: Mm. Michelle Choairy: to I have to find one to go to. But that Jessica Patay: Yes, please do. Michelle Choairy: yes, but it's amazing like what you guys have done it for for the moms that are out there. And and truly it's I have to say thank you. And I'm sure you hear this a lot whenever you go and you speak at a place and the moms come out. But it takes courage to stand up and say, I'm gonna do this, because it takes time for you to do that. It takes time away from your family, it takes time away from your son and Jessica Patay: Mm-hmm. Michelle Choairy: to put this together because this is not easy. I'm trying to start my, you know, my special education advocacy work and it takes so much time. And Jessica Patay: Mm-hmm. Michelle Choairy: we're still caregiving, we're taking care of the family, we're Jessica Patay: Right. Mm-hmm. Michelle Choairy: working. So and I think that a lot of times we do need that time to talk to each other. And Jessica Patay: Mm. Michelle Choairy: I have to say that your emails are so inspiring. And I if it's okay, I would love to hear about Jessica Patay: Mm-hmm. Michelle Choairy: his five days, was it five days that he spent away from you? I think that just came out. So I would love to hear that because I when I think about it, it's like, Am I ever going to be able to get to that point where he's gonna go for five days with somebody? Jessica Patay: Mm-hmm. Yes. I think if you want it and you plan for it, it's possible. It absolutely is. Guilt. Without any, Michelle Choairy: Yeah. Yeah. Jessica Patay: any guilt. so Ryan has been participating for several months in a social recreational program. And he's been on his absolute best behavior there, which is amazing. They do expect the adults that are in their program to be a little more independent than Ryan truly is. But he's been very successful there. And because of that, they invited him to go to camp. And he of course wanted to go to camp. And you know, I had some, you know, meetings ahead of time just to make sure this or that, you know, about his medications, the food schedule, no access to, you know, snacks and drinks whenever he wanted, that kind of thing. but I knew it was a gamble. And I was like, well, where is the camp? How far away is it? Okay, okay. It's three hours away from here. All right. Well, worst case scenario, we have to pick him up if he, you know, is having a rough time. So off he went and it was very, very successful. He had a wonderful time. We did not get a single phone call. He came home, you know, with that camp pie. And in what was in the works actually, even before this was I was gonna go visit. my family in Colorado. And so a few days after he left for camp, I headed out to Colorado. So it was wonderful. My husband and I and my daughter, we got a few days of, you know, peace and quiet in the house and Michelle Choairy: Mm-hmm. Jessica Patay: just to live without locks and it just without the vigilance, the constant vigilance that, you know, caretaking requires. And it was beautiful. It was wonderful. It was like go to the movies, let's go out to dinner, let's go to brunch, it was it was Michelle Choairy: Yes. Jessica Patay: wonderful. And then I took off and my husband picked him up when he came home. And so the break is wonderful. The break is needed. We need to be away from our kids and they need to be away from us because they grow in a way that they don't grow when they're with us 247. So it's a win-win. It's a win-win. Michelle Choairy: Mm-hmm. Yes. I I was I I'm always worried, right? To to send him send my son to camps, for example. And just this morning, today was a testing day because school doesn't start until tomorrow and I needed to do work. And so I said, There are no camps anywhere. Where am I gonna put him? What am I gonna do with my kids? And my daughter goes to this art camp just down the street, and they are great. Like she just loves going there. All they do is art all day, you know, for half a day. It's from nine to one. And Jessica Patay: Mm-hmm. Michelle Choairy: it's structured, she she loves it, and it's kind of her thing, right? It's her art camp. And so when I mentioned to her, I said. I'm thinking about sending Drake. And she's like, No, Mom, no. And then I'm like, But you're gonna like he he's he wants to try it. He loves doing art. He loves doing crafts, And so she's like, Okay, if I get to go tomorrow, then I will take him. And he went, I didn't get a call. My my daughter, as as I she was walking out, she's like, he kept asking for everything, but he got this, and so they gave him a little statue that was there, and she's like, it was fine. And I was like, I'm so glad, right? But unless you try these things with Jessica Patay: Mm. Michelle Choairy: your children, unless you Give them the opportunity to grow and to Jessica Patay: Mm-hmm. Michelle Choairy: learn, they're not going to grow and learn. And we have to be brave women, right? Jessica Patay: Mm-hmm. Mm-hmm. Michelle Choairy: To be able to say, we're gonna give this a try. And if it doesn't work, it doesn't work. We go and pick them up and we bring them home. Jessica Patay: Right. Michelle Choairy: And so but I love it that you had such a great time in Colorado. I I'm sure, you know, it's you I think for moms like caregiving moms, we enjoyed that time so much more. So yeah. Yes. Jessica Patay: Yeah. Yeah. I think all moms need breaks. They deserve breaks. and then when you have caregiving on top of parenting, absolutely, you have got to take breaks. And I know that's really easy for me to say. And, you know, those of you out there listening say, Well, you don't know my life, and I don't have help, and I don't have family, and I don't have friends offering, I don't have respite caregivers where I live, you know, the state doesn't provide respite hours. I hear you. I hear you. I think there are ways around it. I know there's a ton of obstacles. Michelle Choairy: Yeah, there are and we are actually very lucky that here in the state of California we do get those respite hours and through the regional center, through the state funded programs that we have Jessica Patay: Mm-hmm. Michelle Choairy: here. And I know that in other states we they don't exist and for n we talk a lot about having family, having friends and having people around and building that village. And without a village, you don't get anywhere. you really do need a village. And Jessica Patay: Right. Michelle Choairy: it is hard to come up with that village Jessica Patay: Mm-hmm, mm-hmm. Michelle Choairy: because there's not a lot of moms out there that understand what you go through. Jessica Patay: Right. Right. That's true. But I still believe village is possible and you you will have to put down your fear and your pride to bring people into your care circle, whether that's family, friends, or strangers. again, there's a lot of obstacles to building village, but it is possible. We have to be intentional. We have to believe that we deserve it and we truly, truly need it, that we're not meant to to you know, go it alone. We are not Michelle Choairy: Yeah. Jessica Patay: meant to go it alone. We can't. Michelle Choairy: No, we cannot. And I so I'm originally from Brazil and my family is not here. And my husband's Jessica Patay: Uh-huh. Michelle Choairy: family is from Las Vegas, so and we live in Southern California, so we don't have family around. And our friends, the people who stay by us all the time, are the moms of the kids that my son met when he turned three. And they went to school right here Jessica Patay: Mm-hmm. Yeah. Michelle Choairy: down the street, into the school district. Those are the moms that when I'm having a bad day, they're the ones that are gonna listen and they're going to understand what it is Jessica Patay: Right. Michelle Choairy: that that we're going through. And Jessica Patay: Right. Michelle Choairy: so you said it right. Be have the courage to put yourself out there and And one of the things that I say when I'm talking to other moms, and I mentioned this on the podcast too, is that if they don't understand you, if they don't, if they're not welcoming, if they turn away from you, they're not the right people for your village. Walk away. And it's okay. It's okay to Jessica Patay: Right. Right. Mm-hmm. Michelle Choairy: do that. You don't have to feel bad. They don't have to feel bad. They're just not your village. Go find more. There's there's Jessica Patay: Right. Mm-hmm. Michelle Choairy: plenty of people out there. So Jessica Patay: I agree. Michelle Choairy: anyway, okay. So let's talk about your books. Because I I I have to say that I gave away a lot of your books actually. So I bought a bunch of them and Jessica Patay: Thank you. Thank you. Michelle Choairy: then I gave them out to some of my friends, these friends that I mentioned, and then I said If you want to cry, read this book. Jessica Patay: Mm-hmm. Michelle Choairy: Because it is like you find yourself reading those stories of those women. And you feel like my gosh, it's not just me. I you know, look at look at this mom. So talk to me, tell us about how you came up with the idea of The books. Jessica Patay: Well, I'm a writer and and so I, I've always thought about writing a book, my own story or a compilation of stories. And so we as an organization, we always think about moms who are unreachable moms, meaning they are trapped at home because their kid is medically fragile, psychologically fragile, or behaviorally fragile. How do we reach them? How do we give them community connection and validation? when they can't leave their house. Even if we were in every city of the world, with our connection circles and our retreats, there are moms who cannot leave their house. So books travel everywhere. And so that was one one piece of it. We also really wanted to raise awareness about extreme caregiving. And we wanted to shout the worth of caregiving, caregivers and you know our beautiful children. I personally, because I'm just all about elevating my fellow moms, fellow women, I wanted to give them an opportunity to use their voice and to tell their story and to truth tell. So I know that when we read each other's stories of survival and love and resilience and grit and strength, it's inspiring and we feel known and and heard and seen, you know. in each other's stories and it can be just so healing. Also, it's a book that you can give friends and family who are not in the disability community and they get a glimpse. They get a really, really good glimpse into what our lives are like. So all of that was behind book number one for sure. And then with the success of book number one, I knew I definitely wanted to do more. And I had this idea of Letters from seasoned veteran expert moms, so moms who have adult children, writing Michelle Choairy: no. Jessica Patay: letters, writing to new or newer moms, moms who are, you know, just grappling with a diagnosis in their first year or years. And that that that was the intended purpose and audience of the book, because and the book is called Suddenly Brave Together, letters to Caregiving Moms at a Defining Moment of Their Lives. We all know And remember when we got the diagnosis. Whether it took a long time or if it was a short amount of time for your diagnostic Odyssey, you remember the email or the phone call or the doctor's visit, Michelle Choairy: Mm-hmm. Jessica Patay: and you remember that moment before the moment after, because life changes. You're thrust into an alternate universe. I call it altered parenthood or altered motherhood. And you feel so alone, you're in shock, you're scared, you're grieving, you're wondering, you're what ifing. Michelle Choairy: no. Jessica Patay: And I just wanted a book that would be comforting, Michelle Choairy: Mm-hmm. Jessica Patay: truth telling, validating, and just incredible wisdom from moms who had been doing it for a couple of decades at least. We the book has 30 letters and all the moms kids range from 20 to 45. Michelle Choairy: Mm-hmm. Yeah. Jessica Patay: So lots of wisdom, lots of advice, lots of comfort, lots of love and validation. Michelle Choairy: Yeah. it is incredible how much the moms of the older generation, right? A little bit older, how much wisdom they have Jessica Patay: Mm-hmm. Michelle Choairy: to pass on to I I even include myself in the us, even though he's twelve, you know, I I still include myself in that. And As a 12-year-old, a mother of a 12-year-old, I s I really do feel like there are a lot of things that I can share with the Jessica Patay: Mm-hmm. Michelle Choairy: moms who are just getting their diagnosis, who are just starting out. one of the things that has been wonderful, Jessica, with with me, it's being in, you know, starting special education concierge and actually like getting these kids who are just three or four that the parents are not quite sure what's going on with their IEPs, not Jessica Patay: Mm-hmm. Michelle Choairy: really quite go know what's going on with the diagnosis. It's still kind of up in the air. They think that they have one, the school says no, or the school says it says yes and they think no. And just being in that situation in that moment and the I think that both books that you guys put out there, both of them, can teach us in the moms of the young children so much. So I I Jessica Patay: Yeah. Michelle Choairy: loved, loved the books. I love them and it's it really it's really touching and I it is a tearjerker. I I I you know I cried even though I I'm in a place where I do know what's going on with my son. I don't know what's gonna happen to my son. I don't know what Jessica Patay: Mm-hmm. Michelle Choairy: the future really holds for him. But when you Jessica Patay: Mm-hmm. Michelle Choairy: read those things and you read those stories, it's going to be okay. It's gonna be okay, right? Jessica Patay: It is, it is. You will feel better. You will realize just how strong you are and how capable you are and how brilliant you are and how intuitive you are and what an incredible loving mother or father that you are, for sure. Michelle Choairy: Yes, for sure. Okay, I wanna talk to you and ask you Jessica Patay: Mm-hmm. Michelle Choairy: what what do you think that the future is going to be for all of these things that you're putting together? Right? You you have a podcast, you have this amazing community, you have these books and y you know, these are all incredible. a achievements in your life and it it and it says so much about you and about how much you care about them others. So what is this looking like in your life in the future here and also for your community? Jessica Patay: Well, I just hope for expansion that we can have retreats in more locations, connection circles, which is what we call our support groups, in more locations, more books for sure. It would be great if we could publish a book every two years. That would be an amazing Michelle Choairy: Mm-hmm. Jessica Patay: offering. we also we did start something new that I'm really, really proud of called Brave and Empowered, and it's mental health education once a week. Well, it's twice a week, one lesson twice a week, offered by Dr. Zoe, a licensed psychotherapist, who's one of my co-hosts for the podcast. She's been in practice for twenty five years. She's amazing. And she's teaching digestible mental health tools every single week online. And again, you know, we provide mental health education at our retreats, but if you can't get to a retreat, how can we help uplift you and support you? And so Thanks to an angel donor to make that made this possible. That is definitely one of our newest offerings that we just launched. so I'm very excited and and proud of that. You know, I just want more of everything. And Michelle Choairy: Uh-huh. Jessica Patay: I mean, I too, I think I it would be amazing to have an arm of advocacy down the road as well. we're trying our first couples retreat. It would be great if we could get sponsors because doing a couples retreat. fully at a hotel is insanely expensive. We we usually rent a house and have overflow at a local hotel because it's more cost effective, it's more cozy, it feels more private and warm and wonderful. but when it's a couples retreat, it really needs to be at a hotel. And so I hope that we can get sponsors and and keep that going too, because we know that the dads, the partners need support too. Michelle Choairy: Yeah. I was just gonna say you better have a very, very good psychotherapist there for these couple retreats. Jessica Patay: Well, it's not therapy. So yes, we our our couples retreat speaker is Amanda Griffith Atkins, who has a incredible voice and platform in the disability community and she's a licensed therapist. But it's not therapy, you know, and it's it's an opportunity to learn about communication. It's an opportunity to get away together and rest and reconnect and just get refreshed as a couple too. Michelle Choairy: Yeah. That's a whole other conversation to be had because when you include your your significant other, your partner in in all of this, it just it's a hard, it's a hard thing. And I feel like dads sometimes have the worst time accepting with acceptance, with grieving. And I think that that is a lot of what happens with couples. That's Jessica Patay: Mm. Michelle Choairy: one of the reasons why there's so much divorce in special needs families. and so anyway, I I love the idea of the the couples you know Yeah, I think that that would be great. Now, for you personally, besides Jessica Patay: Mm-hmm. Michelle Choairy: this, are you so do you travel and do you do like do you speak? Do you go around? Jessica Patay: Mm-hmm. Michelle Choairy: Do you okay, that's amazing. I think that what a Jessica Patay: Not as much as I would like. Not as much as I would like. I would, if I could travel every month and have a speaking engagement, that would be wonderful. But, Michelle Choairy: Yeah. Jessica Patay: it's not always easy to do that. Michelle Choairy: Yeah. Where were you the last where wh where was the last one that you had? Jessica Patay: I think the last few have been virtual. I do Michelle Choairy: huh. Jessica Patay: have something coming up, but it's local here to LA. Michelle Choairy: Okay, okay. Well, you let me know. We'll put it on the notes. And if people are local, if they can come and watch you, maybe I will come and personally Jessica Patay: Mm-hmm. Michelle Choairy: introduce myself to you. I would love that. So just let us know. but Jessica Patay: Thank you. Thank Thank you. Michelle Choairy: and you were talking about advocacy, Jessica Patay: Mm. Michelle Choairy: the it is you're a mom of a genetic disorder. I'm a mom of a genetic disorder, and like, you know, there's There are so many things that can be done when it comes to advocacy when you cut when it comes to genetic disorders or some kind of, you know, or autism or CP. There's so much that goes on. And I'm actually pretty excited that that I'm gonna go and attend the Global Genes Conference in Boston. Jessica Patay: good. good. Michelle Choairy: Yeah, it big yes, I'm I'm really looking forward to that because I think that that's kind of you know, one area that I am planning on stepping into a little bit more. And I think Jessica Patay: Mm-hmm. Michelle Choairy: that it sounds like you have done so much on this other end, but me actually You've been advocating for all the moms. So you're already in the advocacy part of Jessica Patay: Mm-hmm. Mm-hmm. Michelle Choairy: the business, right? And so thank you again for that because of what you have done and what you have accomplished for us. So I Jessica Patay: You are so welcome. Michelle Choairy: at the end of the the the podcast, I we I usually ask, what is the one thing that you would like for for our listeners to come out of today that has that they have listened what is one thing that you want for them to know but for you I want you to give me three because Jessica Patay: Okay. Mm-hmm. I agree. Okay. Michelle Choairy: you have such yes so Jessica Patay: No. Michelle Choairy: give me three of them if you don't mind Jessica Patay: One, I would say you are not alone and you're not meant to do this alone. So please get connected to community and we can help you do that. secondly, I would say you absolutely have to invest in your own mental and social health. No one's coming to save you. You have to make that decision. And realize that you really matter the most in the family because if you go down, everybody else goes down. If you are empowered and educated, your family is empowered and educated. And so please know that you deserve to invest in your own mental and social health. And lastly, I would say There's always a way to make meaning out of crisis. There's always a way to make meaning out of a really hard story. And I think when we shift from why me to what now? What can I do with this? The answer will come. And I don't say that in any kind of toxic positivity or just find the silver lining, or, you know, there's a purpose for every crisis. And, you know. Pain can be your professor. I don't mean that in super trite, superficial ways. Michelle Choairy: Mm. Jessica Patay: I really mean that it's okay to grieve and it's okay to be angry and it's okay to have lots of feelings about your your story and the challenges and the trials and all the layers of it. But at some point I think we have to just embrace it and accept it and and ask, okay, what what can I do with this? And it doesn't mean you have to start a nonprofit organization. Maybe you just, you know, show up and you're in community with others and you're supportive and you're validated and you're loving. Michelle Choairy: Yeah. Okay. This has been so great. I I honestly I could keep going for so much longer. But you know, the moms, they really kind of just like to keep it a little bit shorter so they can actually listen to it without a kid saying, Mom, mom, mom from the other side of the house. But Jessica Patay: I understand. Michelle Choairy: well, but thank you so much for being here. We were I'm gonna link all of your podcasts, everything is gonna be linked on the show notes. And Jessica Patay: Thank you. Michelle Choairy: I can't thank you enough for coming on and for everything that you have been doing for all of us, all the moms that are out there in the world. So thank you, Jessica. Jessica Patay: You're so welcome and I really, truly mean that. I I started something that I needed. So I know, I know how important it is to, be surrounded by people who truly understand your circumstances and there to say, I see you and I love you. Michelle Choairy: With that, everyone, we will listen and we'll see you next week. Bye bye.