Jessica Raising Ryan

In this episode of Raising Disabled we talk to Jessica Patay about:
raising her son Ryan,
her book and podcast We Are Brave Together,
and her caregiver retreats.

Learn more about Jessica and her projects at https://www.wearebravetogether.org/book

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Transcript

Rhandyl: Hey guys, welcome back to Raising Disabled. To start out, Deonna and I are going to recap you guys on our last few weeks and we do this to keep you guys updated on our lives and our kids lives and all the things that go on behind the scenes, so I've had a lot of downs and a few ups the last couple of weeks. Me too. To be honest. Yeah. It's been rough. Yeah it's been , really hot couple of weeks here. Oh my gosh. Yes. It's been over a hundred almost every day. . 

Deonna: And yet I wear pants outside. I keep going to stores and I'll have sweatpants on and I'm like, what is wrong with me? But I just, I don't know, I keep doing that and I'm burning up.

Rhandyl: Yeah. , what's been going on ? 

Deonna: It was like once back to school gets in your head, then you're just getting ready for it. And so we were kind of already ready for it, but just the meet the teacher and the back to school and all that, it just sucks so much energy out of me. I don't know why maybe just because. I was nervous about Allie, who is my disabled kid starting school and a new school and everything. But it's tiring just thinking about all the things that could be bad about it. And it's sad. I saw this quote the other day that said, imagine what could go right. And I kept telling Allie it could be good things. It's going to be okay. And it actually has ended up being good. Today was first day of school. As we're recording this, and she did great, had fun it was a good experience. 

But, oh man, I was thinking in my head today, you know the verse that says, pray continually or pray without ceasing? I was like, Yes. That is what, Parents of disabled kids do when they send their kids to public school. Cause it's just, you don't know, but I like the school she's at now and they actually called me the day before meet the teacher and asked if we wanted to come in and just do like a preliminary.

Meeting just to tell them what she needs and what will make her life better. And I really appreciated the fact that they all, we walked in there and I thought it was going to be maybe two people and it was like 10 people and. It was everybody and they just wanted to know everything. And so it was cool. Cause I mean, that just was new to me, having her be that proactive. Yeah. And they were like, we laid concrete. So she'll have access to this part of the. Outside. And so it's like they're trying, you know, and that's really good. Honestly, 99 percent of what we want is just to try. Exactly. So, yeah.

How did Remi do? 

Rhandyl: Yeah, we skipped all the meet the teachers. We were lucky this year. Remi, she went to summer school. And her teacher from last year, Was her summer school teacher and is also her teacher again this year. So I was like, yeah, we're not going to meet the teacher. We've already met her, but no, she, she had a great day.

She, yeah, her school bus. Driver and attendant that's on the bus, it was the same ladies this morning that picked picked her up and she was so excited and then she had her classmates, some new, some of the same and yeah. Then as soon as she got home, she had physical therapy right when she got home and poor thing, she was so exhausted. This evening we put her to bed at 7 45 and , I think her eyes were closed before she even hit the bed. She was out. Yeah. Yeah. I know. Like a light.

Deonna: Yeah. Allie was tired too. We had plans to go to church tonight and then there was no way. She just was so sleepy. We have a little friend group and I was like thinking of all y'all today and just everybody's situation super different and some were going to school for the first time and are switching schools are going back to the one they've always gone to, but it's still, I don't know, it still is scary.

All parents are just a little nervous every year, but for us, it's I mean, I don't think other parents are thinking about some of the things we think about Ooh, I hope she doesn't die this week while on her first week of school. Yeah. So it's just not normal, but you know, we make it work. So we. Also we just finished up summer. I feel like our summer was weird. It was a lot of medical stuff at the beginning, and then just a couple of little camps and fun things. But the other day, Cole and Allie were like, can we go do one last thing? 

And so we went to Dave and Buster's and I finally feel. Comfortable letting Cole go take Allie through Dave and Buster's without me just like hovering over them. So I was just sitting at my little table eating my chicken nuggets and living my best life and they're over there. They won like thousands of tickets and so they had the greatest time ever. So it was a good little. Oh, that's fun. Hurrah. Dave and Buster's is expensive, but it's fun. So, yeah, we had a good time. 

But did y'all do anything at the end of summer? 

Rhandyl: Yeah, we actually just had This past weekend, , we planned it before the school year started for everyone. Because both of my kids birthdays are in August. Right. And so we did a combo birthday and all the family traveled , and came here. And we had a That's nice. Like a pool party and dinner and kids opened presents. And it was a lot of fun. It was hot, but it was a lot of fun and 

Remi, it was so funny. Like she usually really doesn't like a lot of attention, in big groups or she's never cared about opening gifts or what her gifts were. I used to open her gifts for her and then show her and she couldn't care less. But this year was different. She was so excited. Honestly, a lot of years when everybody sings her happy birthday, she ends up turning blue and it's a whole thing.

Yeah, I remember that. We're always nervous. Yeah. So we're always nervous. But this year she ate it up. She loved it. And then she, but she refused to eat her cupcake and ice cream. I was trying to feed it to her and she was like, but she yeah, but she had just ate like a large bowl of barbecue, so it was fine, , but it was so funny.

She loved, she got a lot of clothes this year and she, every time I pulled out an outfit, she was like. She was like smiling and happy hands and was like pumped, , she's turning eight at the end of the month. Now I need a fashion show. I know. , and every morning now when she gets ready, she has this long mirror in her room. And after we get her ready and her hair done and everything. We'll, turn the mirror to where she can see herself and she just looks at herself and I'm like, oh my gosh, girl, you're crazy. But yeah, she's, she was all checking herself out. She's, yeah, . I guess she's gonna be a little fashionista now. I don't know. But she was excited the most about her clothes this year, so that was cute.

Deonna: Back and back to school. Clothes are so fun. , I had so much fun with Ali picking out her outfit and then last night she's I don't think I'm going to wear that anymore. And I was like, no, you are wearing it. Like we bought it for you for today. But I was like, it's happening. I, you can wear whatever you want for the rest of the year, but you're wearing this today, girl, but Oh man. Yeah. 

Rhandyl: I usually have a first day outfit picked out and this year this morning I woke up and I was like. Oh my gosh, I don't even know what she's going to wear today. But anyway. She looked cute and she went through about three outfits at school, so it's no big deal.

Deonna: Yeah, I feel like when you have a kid that does that kind of stuff you can't get too attached to one outfit. Yeah, we've always had five backups. Yeah, 

Rhandyl: no. I'm like, but her bows match all of the outfits. You have to coordinate the outfits you put in the backup outfits to go the bows. Because I ain't packing extra bows.

Deonna: Yeah. So. Yeah. And in Texas, we wear big bows. Yeah. Oh, man. 

Rhandyl: The bigger the bow, the closer to God, they say. 

Deonna: That's very true. That's very true. Allie's starting to not want to wear the big bows, and I'm like, oh, man, this one's too big. I know. I know. She's getting too big. But so what else were you guys up to?

Rhandyl: Oh, gosh. Well, Cole and I, we shared this terrible stomach virus. Yeah. Literally lasted a week. . I'm just now feeling back to normal, really, honestly. So that was fun. Um, And, my car broke down. I it's just been, one it was, Barrett was located. Yeah. On the way to drop him little car that we,, ended up being an oil filter thing and it's blowing all the oil out and. Yeah. Seize the engine. So it's trash. And so we're like sharing a car basically and that can't happen. Oh shoot. And so it's just one of those, things that we go through as adults and it's just sucks, but so that's been what we've been dealing with the past week. , so, those are our, ups and downs, really. But what about you guys? 

Deonna: Yeah, I feel like it was, I don't know, it just was a rough last couple weeks, but the one thing I did that was really hard, and , I don't know if anyone's done these in the past that's listening, but I did my first fair hearing, which that's basically, it's like a state fair. hearing or something. And when you want something for your child, like a piece of equipment or something like that, and it gets denied by Medicaid at least in Texas, this is how this works, but you can appeal it and you, have to appear. And I, when they were calling it a hearing, I wasn't really thinking about the fact that they were calling it a hearing, but you get sworn in and stuff. And I'm like, Whoa, this is way more serious than I thought. Yeah. 

They presented this packet of evidence that I had. It was like 60 pages of everything that all my therapists had said about Allie wanting this piece of equipment , or me wanting it for her. Sure. And so. It was wild, like you're basically, you have all your people, like we had Allie's doctor on there, and me, and Allie's occupational therapist, and then the company that makes the product that we want really bad.

Rhandyl: Was this like via tele, like a telemed, like a Zoom? Yeah, it was on the phone. 

,, like a big conference call. And then you had a moderator who actually makes the decision whether the appeal is upheld or not. And then you have a doctor who told you no. So , like all of you and your team are going against the doctor and you're cordially arguing back and forth and you have to keep your head, you can't get emotional.

Deonna: They basically said you need to be very respectful, which I usually can do, but, sometimes it just really upsets me. Mama bear. Yeah, mama bear. Yeah. I started talking and I just like instantly felt myself almost crying and was like, oh crap, like I'm about to get emotional about this. Oh, I hate when that happens. I know. And then my occupational therapist was like, me too. I almost started crying like talking about Allie because I mean, to us, she's a real person, but to this random doctor who told us that Allie doesn't need it. Yeah. And her reasonings were so so funny. And , we're all talking about how frustrating it was because they were trying to prove their point. side of it, which is silly because they don't really even know her. 

But yeah, if you ever do one of those, they're serious. They are not messing around and it is it's intense, but it lasted two hours, which I've been told was long for one, but we had so much information that we wanted to. Good, share. And so, but yeah. Wouldn't recommend that if you're wanting to have a chill day like, God, no. I walked out of there and I was like, I have to get energy out. Like I am freaking out. Yeah. From what I just went through. I need to go on a bike ride and get some energy out. 'cause oh, it was crazy, but. We got through it. 

Rhandyl: So when do you guys find out? 

Deonna: They said it'll be six weeks. So the thing that she wants costs 13, 000 . It's called an OBI and it's like a feeding device that quadriplegics can use or anyone who doesn't have good mobility of mainly the arms, but can feed themselves completely independently.

But One of their main arguments was that even though Allie could feed herself, I would still have to prepare her food for her and clean up after her. And I'm like, what mom in America is not preparing their children's food and cleaning up after them? What kind of world are we living in where you're, are your kids taking care of them? Yeah. I mean, even my 12 year old, I'm still doing things for not cutting his food, but other things, 

Rhandyl: that argument should never be. That's stupid. Yeah. 

Deonna: All of us were dying when she said that, but yeah it's really hard to go through one of those but it's worth it if maybe in the end, but yeah, it'll be a six week wait to find out whether she gets it or not. 

Rhandyl: Y'all been waiting for this for a long time. I'm, I mean, I know as much as it's, tried it back in January. Yeah. So I'm hoping that maybe this is the last process you have to go through and, 

Deonna: yeah, I hope so. Or we'll just do grants or, I mean, there's other options as always for, Anything like this, but I mean, 13, 000. That's a lot of money. I'm just like, come on, come on. 

, I told my husband, I was like that poor doctor. Like I hate her now. And she doesn't even remember me. I'm like, but you're on my blacklist now. Sorry. You're probably a nice person, but. Anyways, but now that's all we've been up to.

I'm glad school has started. I need alone time. I'm that kind of person. I can't, I cannot reset without just some alone time. I have a really hard time being around people all the time. And in our life, that is our reality. So yeah. I'm glad to have a minute, 

good. I'm glad for you for that. I'm not happy about the alarm going off at 5 30 in the morning, but I'm glad to be back in routine and Remi loves school. So it's all good. But yeah, it's. It was rough this morning, 

I'll say that. 

No, but that's what we've been up to. And so, we really loved this episode with Jessica and she had a lot of really great things to say about parenting a disabled child who is a lot older than our kids are. So it gives us insight into what the future will be like. And so it was a really great episode and we will see you guys there. 

 Hey y'all, it's Deonna from Raising Disabled, and at our house, my daughter is in her Zing Stander all the time. She loves it. She loves to get in there and play video games or read or play on her computer. Zing Standers are designed to offer more than just support. They pave the way for crucial early intervention therapy.

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Rhandyl: Hey guys, today we have on Jessica Patay with us and it's such an honor to have you on our show, Jessica. She started an organization in 2017 called We Are Brave Together. Which has grown into a large non profit organization, and she started her podcast in 2020. She's been raising her disabled son for many years, and like us, sought out our community with the isolating caregiving world. And she along with co authors recently published a book called Becoming Brave Together. And it's a compilation of stories of other moms living through the world of raising disabled children and their trials and triumphs. So welcome, Jessica. We're so happy to have you on. 

Jessica: Hi, Rhandyl. Hi, Deonna. Thank you so much for having me.

Rhandyl: Well, first of all, do you want to just start out with telling us about you and your family, where you guys live, 

Jessica: sure. So I am coming from the Los Angeles area, California. So I'm in Southern California, born and raised here, and I've been married to my husband Chris for 27 years, and we have three adult ish kids. Luke, who's 23. Three. And Ryan, who just turned 21 and Ryan is the one I say, made me a caregiver. And I have my daughter, Kate, who is 18.

So we're in that season of life. I have to say. I do enjoy it. I think I've enjoyed every season as we've moved on probably don't want to go back to the toddler years, but,

Rhandyl: Yeah, I have one of those right now

Jessica: oh goodness. Yeah. It's hard. It's just a different hard, now it's like bigger conversations and trajectories and , life altering mistakes could be made or life altering. Great things can happen. , it's just bigger.

Deonna: So many decisions have to be made during that window , so tell us about when you found out that your son was going to be disabled and just his diagnosis at the beginning

Jessica: sure. So Ryan's my second son. I had a normal, healthy pregnancy, labor delivery, and when he was born, he barely cried like that. Stood out to me right away when he was born, just, , a few seconds, let out, a wail, and then it stopped. And I thought, huh, well maybe I just got a quieter newborn.

I remember that struck me right away. He had some breathing issues. He had some other medical issues that first day that he was born and they were asking, is he full term? Is he early? And I said, nope, 40 weeks full term. They treated him like he was a preemie or small for his gestational age was the phrase they use SGA.

And um, It was only one pound lighter than Luke, but he couldn't cry, couldn't suck. He could hardly move. They started running tests and um, we spent a month in the hospital, not knowing what was wrong. We weren't in the NICU. We were transferred to the Peds ward and I got discharged. And so I lived on the Peds ward with Ryan pumping around the clock, seeing doctors and um, working with an OT that specialized in feeding.

So, This is 2003. this was before smartphones, so I wasn't looking up anything. , the two nights that I did go home I did not Google anything. But my husband started Googling symptoms that, they were saying hypotonia, which is low muscle tone, failure to thrive. Cause Ryan couldn't cry for food. He didn't cry for food. He didn't wake up for food and some other medical issues and up popped. Prader Willi syndrome. And so he said, will you please test for this? And a few doctors said, well, he doesn't look like it. There is a look in PWS, not as significant as Down syndrome, but there is a look. If you see a bunch of kids and adults together, you can see it.

And my husband said, well, that's okay. It's a blood test and we don't have any answers yet. So let's do the test. And I'm so grateful for that. 

Anyways. We hit about the four week mark and we went home from the hospital with a feeding tube. My husband had to get back to work. Luke is wondering where his mother is. And so we were like, give him the feeding tube. Let's go home. And a week later, our pediatrician called us to let us know that the DNA methylation analysis test. Showed that Ryan had Prader Willi syndrome and , he called one night. I'll never forget it Chris took the call And then Chris told me and Ryan was asleep on my bed in these red pajamas And I scooped him up and said We will always take care of you. We will always take care of you. 

And I was just in shock and I was just devastated because nobody wants a diagnosis. Nobody wants some rare genetic disorder, rare disease, something that nobody had ever heard of. Even when we were in the hospital and starting the testing for that, , the nurses would say, and the doctors would say, Yeah, I remember reading about that in nursing school or I remember there was one page in the textbook, you know during medical school And so that's not comforting everyone was kind to us and we had a really good experience that month that we lived in the hospital I love nurses so much man. I love them so much, 

But when you Google the diagnosis, it's such a crazy mix of symptoms. It's not just physical. It's not just some medical. It's, this crazy food drive that kicks in childhood. And I'm like, are you kidding me? This is a thing. This is really a thing. It's life threatening. Families have to have locked kitchens. We're reading about behaviors, the psychological impacts. As a spectrum disorder, we are just shocked. We are just completely shocked that this was now our life, our new life as parents.

And I remember being so grateful that I didn't know if I was having a boy or a girl when I was pregnant with Ryan, because my husband wanted it to be a surprise. We found out with Luke that we were having a boy and Chris said, let's have it be a surprise this time. And I really think it's God's grace because I wasn't dreaming and scheming about two brothers and what their life was going to be like. Of course, I already was envisioning sibling life and family life and all of that, of course. But I think that saved me a little bit of grief because I wasn't envisioning these two boys playing Legos together or what have you. Right. So it was, I mean, our hearts and our jaws were on the floor for quite some time.

Rhandyl: And we've talked to one of our other guests. Her son also has Prader Willi syndrome Amanda Griffith Adkins. And so I hadn't heard of it until I was working alongside some registered dietitians right out of college. And , they saw Prader Willi patient. And I remember learning about the Diagnosis then and , you don't hear about it that often, , he's now 21, so I'm sure , you have, so much experience to tell and I encourage other caregivers that are just getting this diagnosis to follow Jessica and her story and she has so much a wonderful advice on her podcast. 

So Jessica walk us through what the first few moments or days were like after receiving the diagnosis. I know it was obviously overwhelming and you showed him love immediately picking him up and just telling him I'm going to take care of you. Whatever that takes. But after that, after the initial shock, how did you guys cope with it, and what did you guys do immediately after 

Jessica: right away, my husband called the national organization and then the California Foundation because he had already found those resources when Ryan was being tested. And so within a few days, we received, I call it the Lisa phone call. She was the executive director of the Prader Willi California Foundation for 15 years and her son was about five years ahead of Ryan and so she was an experienced mom and I mean pretty much an expert because she was running the Foundation and she called and said hi Jessica Congratulations on the birth of your baby boy. I'm gonna be your mentor mom and I Exhaled so much fear And so much anxiety. I'm sure I cried, then I come to find out that she lives here in the South Bay where I live, that the offices for the foundation were here in the South Bay and we could go to an actual in person support group that August.

And so we did, we got plugged in right away with the national organization and then our local foundation and. That first support group. I can still see, all the parents and we became friends with people that we still are friends with to this day. And we just plugged into the community and. found people that we really bonded with and we could ask anything we could seek, resources, we could just share our experiences and they helped us navigate in those early years as you're dealing with regional center. And then the transition from regional center to school district in terms of, services and, That's why I say that Community and Connection saved me is because we had within the diagnosis immediately a group of people that we could go to and that took us in and loved us and, gave us their experiences and, and advice. And it really made a huge difference. 

We went to our first conference when Ryan was a baby. We learned about, being on a food schedule from the beginning, things to watch for, we saw an expert in PWS who was at UCLA, thankfully at the time. We were followed by a geneticist. Ryan had actually a lot of specialist visits his first couple of years. Pulmonologist, urologist, geneticist, endocrinologist, gastroenterologist, a lot, and his pediatrician. So there was a lot of people and then an orthopedic doctor as well because he developed scoliosis as a baby. So we had a lot of specialist visits the first couple of years and my husband went to every single one. Me. I don't know how he did it, but he did. 

Deonna: I really like what that lady said to you when she called you because it's like a two part thing for me. She didn't say. I'm sorry that your kid has been born with this thing. She said, congratulations on having your baby boy. Because , a lot of people around you were probably like, Oh my gosh, I'm so sorry.

And , making you feel negative about him. And so it's really cool how she said that. And then the second part is how she said, And I need to maybe change the way I reach out to parents based off of just hearing what you just said, because she didn't say like, Oh yeah, call me if you ever need me, because that puts all the pressure on you.

And then you're like, well, I don't want to bother her . But when she says, I'm going to be your person, then it makes you feel like, okay, it's okay to, Ask her things because she knew you were going to need her. So I think that whoever this lady is, she had a really cool way of, talking to you that first time, because you feel like a burden to people at first when you're asking to ask them 50 million questions about everything, so it's really cool that she said those things to you. I really, I like that lady. I don't know who she is, but I like her.

Rhandyl: That's similar to how Deonna and I met my daughter was in the disabled world prior to Deonna's daughter. And we weren't living in the same city at the same time, but somehow we got connected through the medical community at a Texas children's hospital in Houston.

And then somehow Deonna got my name and reached out to me because they were moving to where we live. And we've we've had this friendship for a while, and we've also built a community around the same, situation around children that are similar to ours here locally. And it is, it makes a huge difference.

Of course, , it is isolating. And when you can find that local group, it's, amazing. And also. To find podcasts like yours and like ours for parents that are Not able to get out of their house very often and go to meet up with friends and things like that But we don't really meet up that often But we have all of our chats and our parent groups and things like that 

But to go back to the medical you said he had lots of specialists in the beginning. We both can understand that What kind of prognosis did They give you guys, or what does that look like? 

Jessica: The lifespan used to be shorter before growth hormone which is the only current medication that is approved and indicated specifically for Prader Willi syndrome. I think, that the lifespan definitely was Beyond what it used to be. I think with more education and more training for parents, how to handle the food drive and how to create what we call food security That definitely helps because kids and adults every year do eat themselves into medical emergencies and premature deaths, which just sounds horrific. 

I've said that like a thousand times, but you know, it's just horrific. But if you're not watched 24 seven, if the kitchen somehow gets unlocked or it's broken into somehow, Ryan doesn't do that. Thankfully, he doesn't try to break the cabinet or the refrigerator or break the locks. He's very happy that we lock the kitchen because it makes him feel better. 

 In Prader Willi syndrome, what increases their anxiety is access to extra food. So going to a restaurant, going to somebody else's house for any type of occasion, Increases the hope for extra food because in Prader Willi syndrome, not only do you have to have everything locked and you're on a food schedule, you need to have less calories than everybody else because you tend to have low metabolism.

In Ryan's case, he did not show that low metabolism at all. And so I was still very careful, but I've never had to count calories. He isn't on a calorie restricted diet, but I'm very careful. We don't do seconds. And now that he has grown into his adult body and his growth hormone dose is lower, he could potentially gain weight more easily. Like he, he did go through like a 30, 40 pound weight gain all of a sudden, he filled out and it was shocking, but and also that type of weight gain is not good in PWS. , they say it's not good for any of us, but it's like, when kids or adults are overweight, it really affects other things. And it affects kids and adults differently because of the low muscle tone that is without throughout the body. That I've heard it described like the extra weight gain is like a sack of potatoes on your chest for, a kid or adult with Prader Willi syndrome. So anyways, I did freak out a little bit when I noticed like in a year and a half that he had gained 30 or 40 pounds, but it leveled out. So that didn't continue, thankfully. 

So I say all that to say, you want to eat all the time and you get less than everybody else and you have to be on a food schedule. So, we've always followed a food schedule for 21 years.

Deonna: Well, and that's so hard because if you go to a party, like at our family, when you have a party, the food is just out there on this big table. I mean, it's just displayed for everybody and I'm just like, Oh my gosh, the amount of control you guys have to have. And that's just, that's hard. Like holidays. I don't, how do y'all manage holidays with that? Cause I mean, our food's just everywhere.

Jessica: Right. So, I mean, for a holiday, we try to host often and family is understanding too. So if we go somewhere else, like they'll scoop up the appetizers really quick. I will always plate his appetizers. I will plate his dinner. I will plate his dessert. It's hard for him to wait. To eat 'cause he eats early. We bring stuff with us for him to do. We know sometimes that we might need to take two cars because he might be ready to leave before everybody else. And so one of us will leave early. And I think part of that is he gets bored. I think part of that is he gets tired and part of that is I think he wants to be away from, he can't say this, but he wants to be away from the food situation.

Deonna: Yeah. Well, and if you get bored, I know when I get bored, I go eat food sometimes. I mean, it's just, that's a hard, yeah, it's a hard thing to do. Oh my goodness. 

So, how do you guys as a family handle the stress of caregiving? , do you have any tips for other parents about how to handle that stress? Yeah.

Jessica: I think one, talk about it openly. Do not let it be pushed under the rug. Talk about everything openly. Talk about the diagnosis. Make sure that the siblings know that their voice matters and that you as parents are not mind readers. And so you're giving them permission to say how they feel and what they think and validate all of their feelings.

Don't expect over maturity on their part just because they're siblings, that they shouldn't feel embarrassed or angry or upset or disappointed or feel neglected. Let them say whatever they want to say and validate validate. I, one regret I have is that we didn't do family therapy early on when the kids were little or we did do it, , in recent years and that was very helpful and we had definitely made efforts to have one on one dates with Luke and Kate and one on one trips and we do trips without Ryan. We leave him behind with caregivers and still. None of that will make up for the trauma, the difficulty of growing up with a disabled sibling. 

So yes, be intentional. Yes. Do everything you can to have one on one time with the other kids and to talk about everything. And just know that there's really nothing you can do to fully compensate for their experience and what it's like.

I would say make sure you are modeling taking care of yourself. Be active, engage in practices that truly help your mental health, whatever that, that is you deserve that as parents, you are worthy of investing in, you take meticulous care of your children. So please take meticulous care of your own mental health because you don't want to burn out and nobody has enough. Resources to truly prevent burnout, unless you're super privileged and you live in the right state that provides respite hours. And there happened to be, caregivers that are actually available. 

Deonna: , I like that a lot because I sometimes try to make my son be more mature than he really is. He's only 12. And sometimes I think, okay, he is only 12. I am a lot older than him. I'm at a totally different place in life than him. And I expect him to meet me up here in this adult world. And that's just not realistic. 

Like the other day he was at his school. 12 year checkup and they started introducing the questions about anxiety and stress and depression and suicide and you know, all these really tough topics and they made him take this little quiz and he's like, can I tell the truth on this and tell how stressful , my life really is?

And I was like, yeah, you need to tell the truth and don't feel bad if you have to put an answer that might, make you feel like it's going to upset me. I know this is a very stressful situation that you're in and his doctor talked to him about it and it was good, but , it is really hard for us to sometimes make them more mature than they really are there. Even when they're adults, like your kids, they still are young, very young. So I think that's really good advice.

Rhandyl: Now, Jessica, you mentioned that he's not able to express like when he needs to leave somewhere or something like that. So is, Ryan uh, nonverbal as well?

Jessica: Oh no. He's highly verbal. He's highly verbal, but he might act out his needs versus I'm really uncomfortable because all the food is out here and it's not put away. Right. So he can't necessarily articulate that. He might just say, I want to leave. I'm bored. But what's really going on is he wants to leave a situation that's uncomfortable for him.

Rhandyl: I see. , so obviously, the food situation is really hard and the sibling situation, but , what would you say are the hardest parts about caring for Ryan 

Jessica: I would say managing the anxiety. I feel like, I've been walking on eggshells for a very long time. I walk into my house and I feel very tense. I think I'm a little bit better now than I was. You'd have to ask my family, but think it's, it's like PTSD from living with, someone who can go from zero to 60 with their anxiety.

Ryan has been aggressive at times. We're not in aggressive phase right now, but he can get triggered and not speak so nicely and slam doors and all of that. It, managing the anxiety is really, which is why we don't do family trips anymore because it's just too hard. We don't go to restaurants because of the anxiety around food.

One on one he does okay. Like he's going to go out with grandpa for his birthday and I'm sure grandpa will give him more food than I would give him. Let him have seconds, 

Rhandyl: just like grandparents do with every child

Jessica: And they just don't get it no matter what. And so, I'm grateful that, he wants to take Ryan out. But and Brian will behave for him. He won't usually get triggered. But as a family, it's just really hard. So the tension that I live with, the tension that I see and feel in the household not every moment of every day, but I just sometimes wish. I knew how to make it lighter and I wish I could be funnier about our crazy life, and lighten things up. And some people are so good at that. And it's just not my natural. I would say Luke is the wittiest out of us five. And Ryan is pretty funny too, actually. And Luke is good at pointing that out and Kate.

But it, yeah, I would say just managing the anxiety is just, sometimes I, I wish. There was no anxiety and there was like a medical issue that I could be dealing with instead, but everyone's hard is hard. Everyone's hard is their hard and it all needs to be validated and honored.

Deonna: I totally relate to that. There's so many times where I'm walking through the house and I'm , clenching my jaw , and then I stop and I'm like, what is wrong with me? Why do I feel this way? And then I'm like, it's everything, and like , it's really hard to escape. 

And sometimes I'll catch me just feeling really calm and chill. And it's such a great feeling because I don't get that experience very much anymore. And we have a pretty dark sense of humor. We joke about a lot of things, but yeah, even still, I mean, Oh man, I just can get so stress filling, and it's just everything,

Rhandyl: , I feel like I can disguise it even to myself during the day. I just, I'm such a busy person. , I'm always on the go doing something, whether I'm in my house or working or whatever. But it's at night when I I will wake up and like you said, Deonna, my jaws, , it's just like, I can hardly open my mouth. I've been clenching. And. I feel like it all builds up and then, when it's time to rest, my mind doesn't always want to do that. So I think we probably all relate definitely to the anxiety aspect of this life for sure. It's one of the biggest things to manage.

Deonna: so we talked about the hard parts of raising a disabled child, but what are some of the positive and unexpected moments that you or your husband have experienced through this journey? 

Jessica: Yeah. Ryan has taught us so much, right? In the beginning when you get a diagnosis and you start all the early interventions and you know he's going to need, you know, OT PT speech forever and you're trying to get him through his milestones or to the milestones and there's so much focus on that and everything that you're doing for your kid, whether some people have the mindset of like, Yeah. I want to get them to normal, or, you're like in this fixing problem solving mentality. 

And then you realize at some point, Oh, I'm actually learning more from my child and this journey than he or she will ever learn from me or gain from me. And I didn't expect that. And then that turned me on to like how much Luke and Kate also teach me.

I think something else surprising and beautiful is just the shift in perspective, the shift in priorities. I didn't make Luke and Kate check all the boxes in high school to get into some, whatever college. Like I just didn't, I didn't care about that or believe in that. And I knew that they were on their own path. And if they wanted to check boxes and be in clubs and sign up for this and sign up for that, great. But I wasn't going to make them because I didn't really think it mattered. I didn't think it was really important. I didn't want to play the game of, achievement culture. And I never had any ideas that my kids would be in Ivy league schools 

, I don't want to invalidate because everyone's hard is hard, like I said, and I do believe that, but you know, when somebody is complaining about their kid and their four AP classes and they're up till midnight every night, I'm like, well, I'm just trying to keep my kid alive. So I don't really feel bad about that. Like your kid was able to choose that and they're choosing to keep up with such a very hard load and I just doesn't matter. Like it just doesn't matter. So, I think this journey can make you cynical or soft and a little bit of both. And we do have to be careful of that.

Deonna: That cracks me up because this summer, my son, we live in Texas where football is incredibly important. And My son was supposed to maybe do like a football training camp or something this summer, and we didn't do it. And people were like, Oh my gosh, is he going to get to play if he doesn't do this camp?

And I'm just like, I don't care. , I really don't care if he gets to play the whole time, it was very important to others, but to me, it's like, I don't know. It's not that important to me. If he plays great, if he doesn't, Oh, well.

Rhandyl: Okay. So Jessica what or who has helped you the most through the last 21 years of raising Ryan?

Jessica: Well, I would definitely say my husband, Chris. I mean, he has been my anchor. He's been a hands on dad. He's been a hands on husband. He never made me feel like I go to work. Cause before I started, We Are Brave. I was a stay at home mom. He never made me feel from the beginning, 21 years ago, I go to work and you stay home, you handle Ryan and I'll see you at the end of the day. He, I, Always made me feel like he was in it with me and like I said the first two years with all the specialist appointments I think he went to every single one and he's an attorney has a very demanding job and he has a long commute and He made it a priority and he supported me and he supported Ryan. So honestly Chris it number one I don't think I would be where I am today if I didn't have such a supportive husband

Deonna: , and I know it hasn't been all cupcakes and rainbows, obviously, but , it makes me feel good seeing somebody that is. Ahead of us in this journey and knowing that it's possible because it can feel like a lot of people have made me feel like, Oh, your marriage is doomed now because your kid is so medically fragile, but that's not the case. It, but it takes a lot of commitment and work to make it work, 

Rhandyl: and what about for Ryan? Who or what has helped him the most?

Jessica: I don't think anyone's ever asked me that. I'd like to thank me. I deserve a medal. Yeah, that's such a great question. I mean, I think Ryan's always had good teams at school and then, we have a couple caregivers who've been in our life one is a behaviorist who's been in our life for 10 years, and she has her own family now, but she still spends time with Ryan , almost every week. And we could also have Ryan do overnights with her if we needed to. And she has been such a stable force of love and care and guidance, and she knows exactly how to handle him and she's very intentional with her time with him. She knows what to say, what not to say, and she's loved him dearly. And I mean, she's family. Outside of Chris and I as Ryan's anchors, I would say a couple of our caregivers who love Ryan and have been through the good, the bad, and the ugly, and they're still here.

Rhandyl: Yeah I can relate to that. , I mean, we treat all of her nurses as family. But It's definitely something special when, you can just tell as a parent when, There's such a strong connection with your child and their caregiver. They're not replaceable. 

So Jessica, could you tell us what inspired you? I mean obviously Ryan inspired you to start an organization We are brave together and that community of moms and caregivers that you guys started in 2017, correct?

Jessica: So yes, of course, Ryan's my why. I would have never understood what it meant to be a caregiver if I didn't have Ryan. And because we got connected so early on to other parents with the same diagnosis, our parents in our school district. And I say that connection and community saved me. I wanted to create a community where moms could just show up because I know they're exhausted.

They don't have time to find, create, community or create community. And so I knew I wanted to create something for moms just given my own experience. Also I'm a natural gatherer and a connector and a girlfriend's girlfriend. I believe in the friendship of women when we leave all the junk behind, we have so much to offer each other and so I just knew I had to do something.

I knew the need was there. I had the idea for the name. I just knew even though we didn't even have a website yet, we didn't have nonprofit status. I just knew it was time. We just have to launch and go forward. And so we did. And then eventually a few months later, our website was finished. A few months later, we got our nonprofit status and started fundraising.

And I had a, Several people around me that just said, yes, you absolutely have to do this and we're here to support you. And my husband was again, super, super supportive and funded us until we got, our nonprofit status and could officially start fundraising. And so, We launched our mission was to combat the isolation, loneliness, and burnout that caregiving moms face by offering support groups and retreats.

And we wanted to cover most of the cost of the retreats to make it accessible. Our first couple of retreats when he charged a hundred dollars for a weekend away. And that's including five meals, two speakers, All of it. So yeah, now we're up to 300 for the weekend, but we still We subsidize 75 to 100 percent of the cost and we now have a scholarship fund.

So we give a minimum of three scholarships per retreat. Our retreats are pretty intimate. So 12 to 16 moms and we are able to do them all over the United States. We're growing and growing. In our offerings, we have connection circles all over the place as well, which is what we call our support groups.

So if anyone's out there listening and they want to bring a connection circle to where they are, we have a whole system in place to do that, to, interview. And we have an application process and training and mentoring and all of that. So if you're interested, let us know.

Rhandyl: Wow. That is awesome.

 Okay. So you started this in 2017 and then I'm assuming during 2020, the pandemic, you guys were not able to do a lot of these things and is that kind of what inspired you to start this podcast?

Jessica: The podcast was in works before the shutdown, thankfully. Yeah, at the timing was perfect because we needed a way to offer inspirational and practical content That was free and accessible. And so we launched May 2020 and We've completed six seasons and we're in our third season starting our seventh and it's been great.

It's been a wonderful way to, for me to have all these amazing conversations with experts and fellow caregivers. And we've changed things up through the years here or there, what we do. But it's been a real joy.

Rhandyl: Yeah, that's such an inspiration. Now, do you guys have any future plans for for your organization the podcast, 

Jessica: so maybe by the time that this episode drops it might be out there. , we're going to change the title slightly of our podcast. And I'll have a little bit more involvement from my co hosts who are part of the ask us anything episode that we do with Susanna Pace Lavelle and Dr. Zoe Shaw. They're going to do a little bit more in season seven. And for the organization, I definitely would love, we'll get to the book. I know, but I would love to do more anthologies.

And , I dream of doing a big conference too, for moms or for parents, 100, 200 people. Again, Free. So that means big donors, big angel donors, big sponsors to make that happen, which I'm a big dreamer and things tend to come true, which has been amazing. And so I will dream that and manifest that into existence. I would love to do a conference, a weekend conference where parents, partners, spouses could be a part. of that if they want to. 

Rhandyl: Oh, that sounds fun. Yeah. We would be there. Is there anything else you'd like to us to touch on Jessica?

Jessica: if there's anything that I haven't said is that you're not alone. You as a parent to a child with a disability or any type of unique need or a child who's struggling with mental health struggles. You're not alone. It feels very lonely and it feels like you're the only one, but you're not alone and you don't have to do this journey alone.

None of us are meant to do this alone and we have to get brave and ask for help. I say exponential motherhood requires exponential support and we're going to have to ask for that because most people are not going to just out of the blue offer help unless they're listening to us, right?

Unless they read our book, unless they see the things that I'm posting and sharing about, then they're going to say, Oh yeah, I need to offer some tangible help to my friend . But otherwise we need to make our needs known and we cannot do this journey without breaks. We cannot do this journey alone. We really do need to learn from each other and we need to invest in our own mental health as caregivers. , 

Rhandyl: That's great advice. I feel like at least once a day I'm saying the phrase, it takes a village, and you know, you hear that so often, but to me, , it hits home it really does. And I've said it before on multiple episodes, but that was probably the hardest thing for me. Once. having my daughter home and realizing that, Oh, I can't do this by myself because that's my personality type. Like, Oh, I got this, like I can do this. But so that was the hardest thing is to just finally like, let go and realize like, I need a village and I need a lot of help and support.

And then it was as soon as I let that go, My world opened up to so much and so much support. And it seems like the more that we tell our story, the more continuous support is just like you said earlier. just talk about it, , be honest about your feelings and encourage your family members and your Children to do the same thing because I think that we grew up in a generation to where that wasn't necessarily taught.

And so, I've learned just in my adult life to just be honest. Be open and honest about my feelings and express that I don't have this all like I can't do it. It's been that weight that has been lifted. Even though we have so much weight on our shoulders as caregivers, but I think that's a huge step in the caregiver role is to realize you have to have the support. So I appreciate you sharing that.

Jessica: Well, I'm really grateful to be here always. It's an honor. You know, my husband was asking me this morning, , what do you like about, being on other people's podcasts? And I said, I'm always grateful for the opportunity to share our story, to share what We Are Brave is all about, , and what we're offering and our podcasts and our new book. It's just, it's really a privilege to get to, to spread the word and to share encouragement and love to fellow caregivers. So thank you.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.