Episode 12 - The Never-Ending To-Do List
The mental load of special needs parenting goes far beyond everyday parenting responsibilities. Between medical appointments, insurance battles, therapies, IEP meetings, prescriptions, and coordinating care, the to-do list never seems to end.
In this episode of Even If: The Special Needs Parenting Podcast, we talk about the invisible work of care coordination, staying organized, managing caregiver stress, and learning when to ask for help.
Whether you're raising a child with a disability, navigating a rare disease diagnosis, or feeling overwhelmed by caregiving responsibilities, we hope this conversation reminds you that you're not alone.
speaker-0: Welcome to Even If the Special Needs Parenting Podcast. I'm Michaela.
speaker-1: And I'm Maria.
speaker-0: How are you? Hello. I have a whole week off for fall break and I'm so happy. You I'm
speaker-1: Tell me that.
speaker-0: telling you now
speaker-1: D is so nice.
speaker-0: I know. We get a week off for fall break, a week off for winter break, and a week off for spring break.
speaker-1: my gosh.
speaker-0: I know. I'm excited. I have so much writing to do for school though, so I'm really not gonna get too much.
speaker-1: Enjoy it but is it is it just you and all your kids or what
speaker-0: Yeah, the kids kids are home this week too. Yep.
speaker-1: All three of Okay.
speaker-0: Which I'm I mean, Darby's probably gonna be off gallivanting with who knows who, you know, so it's not like she's gonna be home all day long. Yeah. there's always one week that lines up that I don't have the same week as them and I stress over it if we don't have a nurse for Dawson on what we're gonna do with him. But then after the week's over and I'm home alone, I'm like, Yeah, this is nice.
speaker-1: Yeah. You're like, I'll take the stress when I get to be alone.
speaker-0: Not mad about it at all.
speaker-1: that's awesome. I'm glad you get a
speaker-0: break. yeah. Everyone else that I know, all my friends from work and other things are like, we're going on vacation. We're going to Tennessee. We're flying here. We're flying here. And I'm like, y'all have fun. I'm just gonna see the inside of my house for a
speaker-1: Week. I don't wanna go anywhere right now.
speaker-0: I don't either. Yeah. It's a good thing that we don't record video because I'm you know, you see me. Others love me. This is you I see me
speaker-1: And you see.
speaker-0: right now. This is how I'm gonna be all week.
speaker-1: No makeup on, hair not fixed, in sweats. Well, maybe not for You
speaker-0: Are you not wearing a bra? Nope, no.
speaker-1: probably don't wear sweats down there in around Houston.
speaker-0: Absolutely not. There are psycho people down here that do. It's seventies and they're like it's so cold. I
speaker-1: You're like
speaker-0: don't say it's cold till it's like in the thirties. Like I I hate being hot.
speaker-1: Yeah. No. And we're at that point right now where it's really, really chilly in the morning. So I will put a sweatshirt on. And then by the afternoon it's getting up to like eighty something this week. And so I've then I've been hot.
speaker-0: Over it. I want real fall and we don't get real fall. Our winter is fall.
speaker-1: Yeah. No, we definitely I th everything I've heard is we are supposed to have a winter this year. Like it's supposed to get really I know, I know. But we
speaker-0: Always say that. I know we did a winter
speaker-1: actually get I just mean like more not yeah, I think snow too is what they're saying. It's like last year we didn't have very much snow. And I think they're saying we're supposed to be
speaker-0: Yeah.
speaker-1: we'll see.
speaker-0: So this week's episode, we've gone away from mental health side of things. That was a long couple of weeks, but hopefully people found things that they were able to resonate with and maybe find some suggestions and things to get some help with things that they're struggling with. So today we're talking about care coordination. So what that basically is, it's all of the invisible work that we all do on a regular basis, coordinating our child's care from all the appointments, the therapies, the school meetings. IEPs, insurance, equipment, paperwork. It's, you know, the list is ongoing and it's absolutely ridiculous. Some of the things that we have to deal with, you know, on a regular basis, and more so than my other kid that the one in the middle that doesn't have any additional or special needs. You know, I s this is, you know, everyday parenting. This is stuff we obviously do on a regular basis for our kids, but this is The extreme side of it that I think a lot of people just don't realize that we all have to do all the time, every you know, second of the day.
speaker-1: Well, and it's on top of all the things that you have to do, just being a parent in general. You know, you have for you, you have orchestra concerts and practices and all these different things that other parents have. basketball, football, you know, all these things. But then you have this other extra layer on top of it of appointments and insurance and all this stuff that not everyone has to do.
speaker-0: Right. I mean yes, we all take our kid to the doctor, you know, for their checkup or if they're sick, but that's that's just normal life. That's yeah. That is definitely not what we're talking about in this situation.
speaker-1: Rare. That is you might have to take your kids to the doctor a couple of times a year.
speaker-0: Yeah. Take Darby to urgent care this week. yeah. my gosh. Thankfully they were so quick. Who who takes their kid to urgent care and then takes them back to school? Me. Because
speaker-1: Yeah.
speaker-0: it wasn't anything that affected her being able to be at school or anything. So maybe
speaker-1: Baby.
speaker-0: she's it's still it's still an issue, but it's gotten better. Steroids help. Yeah. So does that mean Derby's gonna get all super strong now? And I'm like, it's not those kind of steroids.
speaker-1: But that would be cool, but no.
speaker-0: Yeah. Then everyone would be taking those kinds of steroids. So yes, people see the appointments, but they don't see the things that come, you know, in those in the trenches of it, the calls, the forms of follow-ups, the mental energy that it takes to keep, you know, basically the wheel that is all of our lives and houses running on a regular basis. So that's what today's episode is about, and that's what we're going to talk about. But before we start that, why did you cry this week?
speaker-1: Are you gonna go first or me?
speaker-0: You're supposed to think about these ahead of time. You know it's coming. I know.
speaker-1: Just asking if you want to
speaker-0: No, I thought you were stalling.
speaker-1: I mean
speaker-0: I have two I have one that wasn't anything to do with this because I've made a fool of myself. This is very like Brian Regan coated. Okay. I was eating lunch with a friend this week. We were at this little small barbecue place and you you give them your order, they take your name, you go and sit down with your drink, and then they they come and they say your name and you flag them down whatever when they say your name and then the lady came and put my food down and she was and you know she re said what I ordered to make sure it was the right order and I was like, Yes, thank you so much. And she said, enjoy. And I said, you too. And then I panicked because I was like, no, I just did it. You just turned around and yelled, Not YouTube. Made it worse. And my friend busted out laughing because I literally should just let it go. Yeah. But I made it worse by like taking back my
speaker-1: Yeah, you're you too. So you cried because of that?
speaker-0: No, but I was embarrassed. I was mortified. I was like, and everyone like heard it because it was a small little room. I was like, that was.
speaker-1: Care you too. my gosh.
speaker-0: it was actually last night we Zach and Darby and I went out to eat at at Torchies and we were leaving the parking lot and crossing the parking lot. I don't know where they were going or where they were coming from, because it really didn't make sense based on where this is located. Just older man pushing pretty sure it was his daughter. She was middle aged, he was older, in in a wheelchair, and it was pretty obvious she had cerebral palsy. And I just, you know, in those moments it's like that's It's amazing, it's beautiful thing to see, but then it's also hard to see 'cause it's like that is his whole life. He has been a caregiver of this adult who, you know, sh can't do anything for herself. And then he's still loving her, taking her places, doing things, you know, at the same time I'm like, it's beautiful to see, but then I'm like, that's our future, you know. So I didn't like it was it was just it was silent crying 'cause I was just like, Yes. No, just those things kinda hit you out of nowhere when you see in the wild and it just kinda it halts you in place that you're able to see like glimpses of what the future could look like. So anyway, yeah, those were my two had this
speaker-1: I think I just have overwhelming just anxious worriness this week with money. And I talked to you a little bit about it. Just we went to the dentist and I'm you might as well just get robbed. Going to the dentist.
speaker-0: It doesn't matter if you have insurance, it doesn't matter.
speaker-1: I So we had that on Monday and then our dentist said Lucy needed braces. So then that I was already like, my gosh. I don't even know how much those but she needs them. Like she has to have them.
speaker-0: She looks so cute with braces.
speaker-1: And I know she always looks cute. But so then I had that and then I went to Washington
speaker-0: But
speaker-1: that Washington D C meeting on Tuesday. Yeah. And that's that's gonna be extremely expensive too. And then I will need
speaker-0: What year is that? But she's one of Two years. So yeah, that's how ours was set up two years. Do
speaker-1: Two years to save for it, but still.
speaker-0: you all have to pay it all at once? Ours was like monthly payment payments.
speaker-1: monthly payment.
speaker-0: Yeah.
speaker-1: And then I had my student loan stuff is kind of changing a little bit. And so that's you know, it's just it was just boom, boom, boom in a row. And I was just like super anxious about I'm not working. I'm not really contributing, you know, to my family's money. And all of this stuff is stuff that we, you know, is coming up and I'm just like, am I doing what I'm supposed to be doing? What what am I supposed to do with my life? And how are we gonna pay for all this stuff? And it's which I know for DC we can do fundraising and stuff like that, which we I mean, we're gonna have to. Yeah. But I don't know. I just it was just one of those days it just hit me and I was just got a little emotional about it 'cause it's just
speaker-0: It's hard. Money having to have money sucks. Well it's just such a necess necessity. It's something we have to have. And then it's just, you know, you get in that situation where there's no way to get more of it. It just doesn't magically appear. Nope. That's not life.
speaker-1: Unless you win the lottery, as you
speaker-0: Well, yeah. But you gotta play that. And then once the day it's like
speaker-1: And one in life.
speaker-0: five million, you know, that you're gonna win the big I know. I know. It's not gonna happen.
speaker-1: It's a lot. And then I had some friends with my kids this week. So Ellie and Lucy both cried over friends this week. One
speaker-0: Just
speaker-1: of those things just being left out, not feeling like you have friends and this and that. And then it just gets you know, then I'm thinking about it later and it gets me emotional because I'm like, I just want my kids to have a few good friends that can just be reliable and be loyal to them and not just drop them a a drop of a hat.
speaker-0: no. Ugh.
speaker-1: It's just hard and it's hard being teenagers and small
speaker-0: In a small.
speaker-1: town. We just don't ha and that's what I've always I'm trying to tell Ellie, especially now being a sophomore. It's just like you live in such a small town. It's it's hard. It's easier to make friends whenever you are off somewhere and Yeah. You have kind of the same likes and things and
speaker-0: Yeah, and you've known these people almost your whole life and they just they think that they know who you are once you get that stigma tied to you in a small town. And that's it. You can't break free from it so
speaker-1: It it's
speaker-0: hard. It's definitely nice to have there's pros and cons to a larger town, a larger school, but you definitely have a better chance of finding your people in a larger school. 'Cause everyone's gonna have some of the same quirks and interests and likes than in those tiny little towns where you have thirty people in your grade and that's it. I know.
speaker-1: It's it's crazy. I'm like be friends with b girls can be
speaker-0: He's so mean. I know. no. We're gonna talk about what care coordination kind of looks like in our own lives. So between the both of us, I mean, I feel like we have a decent amount of care coordinating that we have to do, you know, between all of our kiddos and everything like that. So for me, I mean I feel like a lot of this stuff is somewhat easier in a larger town because there's just there's more options, there's more things to choose from. Like I get all of Dawson's Medical supplies and equipment delivered to the house every month. I get him an email. I know when it's coming. I know what to expect and all of his shipment. So, you know, it's it's not that that aspect of it isn't stressful. It's only when they will send me an email or a text and be like, you were out of this supply for this month. And I'm like, I need that. Like, that's not an option. Yeah. You know. besides that, it's it's not anything that I really ever have to worry about because it's just delivered to a door because we live in such a highly populated area. There's always delivery service. Everything's on time. You know what I mean? So in that aspect of stuff, it's that that area doesn't stress me out. Used to insurance, he's finally on a waiver list. So insurance is not an issue right now. And I know that is not the case for everyone. We are blessed in that regard because his needs are so severe. Yeah. He is on a waiver list. So everything's covered. That's not anything. You know, for him, my other two I do because they're on school insurance with me, and that's horrible.
speaker-1: Yeah, that's
speaker-0: So I'm like, I need y'all to just not even breathe and hurt yourself because yeah, I can't afford what comes with this insurance. But yeah, there was times with Dawson early on, and I don't know if you knew this, he didn't have insurance. He didn't have insurance till he was like, I don't know, six, seven, like the first half of his life, and obviously. He was born with all of his issues, so it's not like they've just progressed. They've always been there. Yeah. I was working the system like crazy, man. I was on social media, I was on Facebook pages, I was on these pages where people would ship. You just had to pay for shipping for certain medical supplies, for his formula, for his bags and syringes. Like I was doing everything. I was finding any resource where it was like a one time thing would they would give you like a G button replacement because I couldn't afford to pay for You know, the button replacement out of pocket. You know, I was just trying to find anything that I could. His piatrician's office when we lived in Lubbock, the nurses knew that we didn't have insurance. But they also gave you a big old discount for just if you d it was just a regular pediatrician appointment to pay out of pocket. So I'd have to schedule his appointments around payday. they would they knew we didn't have insurance because we couldn't afford insurance and I was staying home with Dawson and Zach didn't get through work, so
speaker-1: I guess you just had Medicaid this whole time. No.
speaker-0: We did not qualify for Medicaid, even when I wasn't working. Zach made too much money on paper for the for a family of five. No half of his life I was doing this. His nurses, whenever the the doctors would come and they they know or not the doctors, the reps would come. yeah. And they would give samples and stuff. The nurse would I'm serious. They would call me and be Hey, we have samples for y'all. So I would drive over there and get samples and that would tide us over for a little while. Like it was just so It was so dumb, all the finagling and just crazy things that I had to do. And then finally when he got on the waiver list, I was like
speaker-1: Thank you, D.
speaker-0: Just one less thing, didn't have to worry about. Like how to feed this kid who has a G tube and I can't of course I probably could have made his food like a lot of people do. But once I started back to work, that was just not an option. So but even if I made his food, he still it still didn't cover the supplies, you know, just is a lot.
speaker-1: Yeah.
speaker-0: So and thankfully now that his health has kind of changed and we do need a lot
speaker-1: L
speaker-0: more stuff delivered to the house for that. I'm just thankful that that's not something that because I mean, I know you can speak from the private insurance side of things because thankfully he's not on my private insurance, but I know so many other people out there just they struggle because they have such a high deductible or they only get so much paid for, and then everything else has to come out of pocket. Like it's a lot and I know y'all deal with some of that too. Right.
speaker-1: Byron's is through the church pays for his and we've had this we have had this insurance since he's, you know, a Baptist pastor. It's through guidestone. I don't know how it works. It's through guidestone. And so that's just kind of what we've we go through. it's a PPO. It's it's just it's really good insurance. We also have a I don't know what they would be called. We have a nurse that checks up on us once a month. really? That calls and asks what we need. And it's and
speaker-0: Your insurance or
speaker-1: she's a part of our insurance. Yeah, not through guidestone. She's the blue cross. and and it's not like because I know like the school's insurance is isn't it blue cross? Is that what you'll have? I it's I don't know what it is, but it's different. It's because ours isn't like blue cross of Texas. It's just like blue cross blue shield.
speaker-0: Yeah. Because it's through a school district.
speaker-1: 'Cause like our my our main office on the back of my insurance card is like I don't even know. I don't know where it's from. It's a different state though. It's not Texas. So
speaker-0: Bacha.
speaker-1: I don't know. It is, it's really, really good insurance and the church pays for it. And it's a it's a our deductible is very low. So we, you know, we hit our deductible pretty quick. It is.
speaker-0: Yeah, that's nice.
speaker-1: It's very nice. But you know, we tried When Lucy was first diagnosed, we tried all sorts of stuff and and Byron made too much money for us to qualify for anything. So we were like, Okay
speaker-0: Yep. We guess Yeah, you look great on paper, but after all the bills are paid, you're like, Well, there's nothing left to cover anything in regards to insurance or needs 'cause everything goes to bills.
speaker-1: I know. It's it is just crazy.
speaker-0: mean and not just, you know, insurance. That's just a big part of care coordination. But you know, we have we used to do outpatient therapy for Dawson. We've quit doing that just because it wasn't feasible with our life and where we had a drive at the time and what to do. We thankfully have therapy that comes to the house. So we don't have to worry about that. Our main thing is coordinating, I think, between school, because I think we all can agree. Your kid has a Massive IEP with all the things and you know your IEP meeting is over an hour long and all of that. Like that's its whole old new world. That's nothing to do with the medical side of things. I guess, you know, for us in that regard, it's more equipment and then it's just medical stuff. We have we're split between where we get our medicine. We get our medicine from H E B, but we also get all of his seizure meds and another one from Texas Children's Has a Specialty Pharmacy. And it's nice because they take care of that on their side of things. We don't ever have to call when we're about to need a refill. They do it on their end and they deliver it to our house. So that's
speaker-1: That's nice.
speaker-0: nice. But all you know, there's definitely been times we have dropped the ball and have not called in a prescription and it was something he needed that night and he was out of and we're like, dang it, you know, you can't call five minutes from about to close and expect to get it filled. One of our main things I think definitely is just all the the doctors. And it's it depends on the season. Like right now, we're kind of coasting. Summer was really hard because I try to schedule some d some doctors we have to see three every three months. Sometimes we only see twice a year. So every six months. Those I try to schedule in the summer because I'm home with him. He's not missing school. I'm not missing work. It's easy. The other two now because they're older and they're doing their own thing. It's not as big of a deal. As it was when they were little, and I had to find babysitters or I had to take them with me or whatever. But then there's those seasons where it's like, we're sick, we have this going on, or this has changed, or we're doing surgery for this, and it's all the time, like one after another. And it's a lot to keep up with. Like when it gets to that point, it is overwhelming. But you know, and I'm sure there's some of us who kind of have it the same way, you know, where it where we kind of coast for a while and things are manageable. And then all of a sudden, bam, it's like nonstop hitting us from every direction. And that's when the care coordination can get overwhelming. But then I know we there's also some of us who it's like that twenty four seven at their house. And that is when it definitely gets way overwhelming. So
speaker-1: Yeah.
speaker-0: what about on y'all side of things? Since y'all kind of are in the boonies
speaker-1: B
speaker-0: and you know, you have to drive so far to get anywhere. I mean, do y'all tend to schedule all of your stuff? Where you can knock a lot out at one time when you're in town. No.
speaker-1: Always. no, I'm like I'm like agreeing with you. Yes, I'm not I'm not saying no. I'm like yes. Always. And that and that is the good thing about our hospital that we go to, Children's Colorado. They are so good to to coordinate with us.
speaker-0: Good.
speaker-1: From the very, very beginning because, you know, it was originally just Lucy, but then when Lincoln got diagnosed, now I have two kids that I'm having to schedule. their treatments and appointments and all those things and they just they're so great to just make sure that we get everything done whenever we come, every four months. We're not having to you you know, I have friends that every
speaker-0: Yeah, you can't
speaker-1: two months or something. And it yeah, it gets too expensive. And our trip last week was a quick trip. But then when we go probably the end of January, we're gonna have to be there for a whole week because we'll have extra appointments that we'll have to do.
speaker-0: Yeah.
speaker-1: It's just easier just to stay there and get all done than trying to get back.
speaker-0: I'm sure the gas and the food and the hotel and it does that's that's a lot.
speaker-1: Does. It does. And it's and I know that there's other people somewhere like us that they you know, they live kind of in the middle of nowhere and they have to travel and it's just you know, it would be easier if we lived closer to a major hospital. It w I mean I really it would be easier, but I don't I feel like we're where we're supposed to be still for now, so
speaker-0: Yeah. Yeah.
speaker-1: But it's their school. when you were talking about the supplies and stuff, the thing that I've dropped the ball with before on that is getting your prescription renewed for your supplies and stuff. That's what always throws me off because I'll get my monthly supplies in and it's great. And then all of a sudden I'll be like, Hey, we need supplies, and they'll be like, well, you need another prescription for this one. Yeah, from your doctor.
speaker-0: From who? From your piatrician I don't ever have to renew that. That's all done behind the scenes. I don't have to mess with that. I don't know if
speaker-1: You know, maybe that's maybe that was because we had to switch suppliers. Maybe that's what that was another thing that that was hard there for a time frame for me because we went from quorum to shield healthcare and that whole transition was just a pain. yes.
speaker-0: From anything. Maybe that's what I'm thinking of was because we had a
speaker-1: get all the new prescriptions and stuff when we switched and I just was like, my gosh, I am dropping the so
speaker-0: I'm just ball
speaker-1: much on this.
speaker-0: That's hard. And that's something people also don't talk about. Like we've moved three times since Dawson was born. And just having to start over every time with swapping. well, they don't ship to your area. You have to change this medical provider. you gotta change hospital systems. You gotta have all these new special, you know, special T Dog, you know, all these things. It is a nightmare. I told Zach, I like, We are not doing anything until he becomes an adult. Like I'm not, I'm not doing it again. Whenever he has a transition out of where he's at now. I know. I'm like I I'm just no, it's it is too much. And it is not as smooth and easy transition.
speaker-1: No. No.
speaker-0: Especially when you have, you know, eighty seven different specialists you have to see. Yep. Maybe not that many. But it's a
speaker-1: No pick spot. You're in a good spot right now. Yes.
speaker-0: So which parts are there anything that you think not even just for you, for just all, you know, all of us in general, the parts that take more time than other people realize, like the stuff behind the scenes that's just nonstop. What do you think is the most, you know, high needs, demanding part of it all?
speaker-1: I mean, I know insurance can be such a pain. I do think like if you're therapies are are definitely pretty time consuming. Whenever if you're doing PTOT or whatever you're having to go and do and depending upon where you're at and where your drive is and how many times you're doing that, that can be 'cause it's just such a it's such a interrupter of your day too sometimes depending upon when you do it. You're like, we gotta go to therapy.
speaker-0: Well, it's hard because like if you work, then it's like how do I get my kids that are either take time off work or you know, you don't work because you have to do all these things for your kids and then you have to pull them from school and the school complains and you know, and a lot of people don't realize there's a difference in school based therapy and medical therapy. Like they are not the same. School therapy is based from an educational standpoint. So if you get PT at school, it's just for positioning and support. It's not actually working on strength and conditioning and all these things. Motor control. You know, it's it's completely different.
speaker-1: Yeah.
speaker-0: They we we I mean, that's why I was so thankful we started getting PT. We don't get O T and speech that comes to the house. They just don't have enough people in the area to add Dawson to their list. But thankfully we get PT and that's why he needs the most. Yeah. And that's just one thing I don't have to worry about. She comes after school when he's home and she works with him and I'm, you know, cooking supper or doing something. But yeah. It just Everything. And I know that seems redundant, but just the overall day to day of everything that we have to do nonstop is just what I think people just don't stop and think about. They think about just, you know, your child's in the hospital or you know, you have the special needs kids, that's part of your life and you're gonna take care of them, you know, forever. But people don't see the wheels that are constantly behind the scenes. Yeah. That just keeps everything. going and if we didn't do it, everything would just fall apart and it would be disastrous.
speaker-1: No, it would be I think and the phone calls, like it's just there's times I'm I don't go a week without getting a phone call from the hospital from like right now Lucy's getting a new manual chair. So I'm I've talked to New Motion almost every week. Either insurance for the chair or, you know, just even just simple things like setting up the delivery date. You know, and then you gotta, you know, figure out where Yeah.
speaker-0: Like I have no time to meet you for the
speaker-1: Well no, thankfully they come here. They they will come to the boonies.
speaker-0: Yeah.
speaker-1: Nice.
speaker-0: Our problem with the equipment like that that gets delivered is Dawson obviously has to be there because they have to fit it to him and all that stuff. Well, I have to go get him to school to bring him home to do this. Well, I work an hour from where his school is. So I have to leave earlier. Try to go get him and then bring him home. And they only have a small window of times they're in our area. They won't make a special trip. They have to coordinate because we're in such a large area. Of when they're in this area to where they could actually deliver. And I'm like, You're gonna make me miss six hours of work to put Dawson in a standard for five minutes. You know, it's one of those things that's just it's just frustrating.
speaker-1: Once again, that is some of the perks of a small town because th it's kind of the same. Like they're only gonna come up here if they're doing other things. Yeah. The
speaker-0: In the
speaker-1: other towns and stuff. But I mean they'll just go to the school. They won't they don't even have to come to the house. They'll just take it up to the school. And I'll just I mean, a block away, I'll just go and be like, Okay, Lizzie, let's go see how your chair fits and it's fine. But
speaker-0: Yeah.
speaker-1: that and you know, that's only We do a manual chair every five years, we do a power chair every five years. And so it's not like you're always having to talk to them all the time for those things, but
speaker-0: So is she has she outgrown it or is the five years up on her wheelchair?
speaker-1: It's both. I mean it's it's five years growing, yeah. And she she she is she's gotten her legs have gotten longer and she just doesn't fit in her other one as well. So you'll see it when we for Think think Miss.
speaker-0: When we see you for Thanksgiving. So are there specific things that you use? And we talked about this on social media and a lot of people said some good things that they use to help you basically stay organized. Obviously, not all these systems connect. It would be perfect. If we lived in a real world where you know the school communicated With doctors and doctors and therapy and then the this and then you know, it would be nice if that like aspect of life just intertwined well enough. Like I w there was an app. I like, I wanna create an app where all this stuff facilitates and connects into one spot. But you know, hospitals aren't gonna let anyone else have access to you know what I'm saying? But like that would make our lives more easy if we didn't have to go to my chart for everything and we could sync our my chart with every doctor's appointment or every message to another calendar we you know, would be It would make life so much easier. Hippa and all that. I
speaker-1: A girl can dream.
speaker-0: know. I can dream. what do you actually use? I know you said it was something I had never heard of that tells you yeah how in the know of things I am.
speaker-1: Had my cozy app for many, many years. It's
speaker-0: What is cozy app? That's what
speaker-1: I mean, it's just a calendar. I just like it. So I tried me and Byron tried Google, like to just kind of have our shared Google calendar. It just, I don't know why, it just did not work for us. And so I had a friend that told me about the cozy app. It I pay for the premium one, so it's like $40 a year. all my kids have their own color. And it's just like immediately if I if I get off the phone or literally while I'm talking and we're scheduling something, doing anything, I put everything in there.
speaker-0: Yeah.
speaker-1: Like the minorest like I make I
speaker-0: Don't forget later.
speaker-1: am taking a meal to someone this evening that had surgery this week. I put that in my calendar. Everything goes in. And but then about a year ago I got the skylight calendar and it connects with my cozy app. So and so now I have it just sitting where and Lucy looks at it all the time too. She's always looking to see what's on our calendar. So now it's just like everyone has where they can go see what's going on and they can look and check the calendar what's going on.
speaker-0: Do you have you just like have it sitting on your c on your counter where everyone can see it? Like what are they looking at? Is it on an iPad?
speaker-1: No, it I mean it it almost could look like an iPad, it's just a screen.
speaker-0: Where do you where did you get the screen?
speaker-1: From skylight. From the skylight.
speaker-0: okay. It's their okay. I was thinking it was an app, sorry.
speaker-1: No, no, I mean so and it does you can get the Skylight app, which is a calendar. You
speaker-0: Yeah.
speaker-1: don't have but I already have my cozy calendar, so I'm I wasn't gonna get like a new calendar. But
speaker-0: Does the Google does Google Calendar connect to that?
speaker-1: Google will connect to it too. There's
speaker-0: There's a few
speaker-1: you, Google, Cozy, of course the Skylight one, and there might be another one that you can connect to it, but
speaker-0: But okay.
speaker-1: I just any little I I just would forget everything if I didn't put it in my calendar. And that's I don't know, that's the what that's what's worked for me. Now I get very frustrated with and he knows this, my husband because I put everything in there and it'll be like, Well, what do we got going on? or what you know and I'm like, look at the calendar. It's
speaker-0: In the calendar? You're nicer than me. I would just walk away. Like I'm I'm not I'm not acknowledging this question at this point.
speaker-1: put the my the smallest thing that we have going on, it is in there.
speaker-0: That's funny. Yeah, I do that, but I just do it on the Google on on the Google. The Google our Google Calendar like that. The second we schedule an appointment for the doctor, I don't just check it on his my chart. I put it in good because that's what we use at school and work. So I do both because I gotta know, Dawson has an appointment on this day. I have two IEP meetings on this day. I can't take him, you know, Zach has to. So yeah. In that regard, that makes my lab a little bit easier because that's not double work. on my end having to I would have to put everything from work if I used like Skylight or another app like that. Yeah. So for me that's what works because that's already such a big part of my week is all the stuff that I have to do at work. Yeah.
speaker-1: the the skylight, we have the smaller one. They I mean you can get a huge screen. You can get
speaker-0: That's nice.
speaker-1: a big one and just like hang it up on your it
speaker-0: Yeah.
speaker-1: does. It almost could look like a T V on your wall. Some of us might
speaker-0: Need something that big to walk by every day. Something
speaker-1: I know
speaker-0: you want me to
speaker-1: sync everything to it and then everyone can just kind of see it and look at it. And then it chimes. So like if you have an appointment and you set a reminder for, you know, fifteen minutes before your appointment, it'll go brrr and it'll chime up and remind you. Yeah.
speaker-0: So was there something that y'all did before like you kind of transitioned into the system that you've done in the past that obviously just was not cutting it for y'all?
speaker-1: I've always been pretty good with calendars, always. Even if even if it was just like something I carried in my purse as a little planner, I've always just done that. So I mean, I think there was when I was working and stuff, I did feel a lot more like I'm I missed things and was stressed out a lot more just because I was just so busy all the time. And there was just so much going on. Yeah. I've done better. I try really, really hard to just
speaker-0: No, it's so much. It's just so much all the time. We do everything for our kids and if we work or don't work, you know, all of that on top of it. But then I'm like, when do I ever get to go to the doctor? You know? Yeah. Just how how am I supposed to schedule this when I miss so much work or have to leave, you know, an hour early on some days to go and take Dawson somewhere or come in late and I don't have time to take myself. Because it's all, you know, revolved around him and then, you know, that's a whole nother topic about, you know, putting ourselves on the back burner when it comes to health because our kids have to come first.
speaker-1: Yeah. I I told you about my my girl doctor appointment. Did I tell you about that?
speaker-0: No, do I want to know about this?
speaker-1: Well, they had changed it to where I you know, used to we just went and had our checku every year. And then now they're like, you don't have to do that but every three years Yeah.
speaker-0: yeah.
speaker-1: Okay. And so I was like, cool. Well I was thinking about it and I was like, you know, when was the last time I had that? So then I get on my cozy app and I'm going back and I'm going back through the years trying to find when was my last appointment with this? and so I was like Was like maybe three to four days early from three years. my gosh, I've got to call and make this appointment. So I called.
speaker-0: That popped into your head.
speaker-1: I know it really was it was a life insurance thing. We were try we were doing li some life insurance policy stuff and that was a question was when was your last smear? And I was just like So I call.
speaker-0: I don't know what my violated in a while
speaker-1: I know. I call and they're like, well, it's been three years and you are not considered a patient with this doctor anymore.
speaker-0: It is
speaker-1: Not until the next summer that you can get in with her. And I'm like, y'all are the ones that told me to get one every three. So
speaker-0: That's dumb.
speaker-1: now I'm considered not a patient?
speaker-0: Did you call and complain? So
speaker-1: So I went ahead and I scheduled it and then I was like, no, this is ridiculous. And so I called back and I was like, I want to talk to somebody big I was sh I was so upset. Yeah. Because I'm like, she delivered Lincoln, like she knows me very well. And she's called me before because she had a patient that had a kid with SMA and so she wanted to know if she wanted to talk to someone if she could call me. And I was like, Absolutely. So anyways, I was not happy and they they were like No, you're not the only one that we've actually like this has happened to. And I like, Well, I think it's ridiculous.
speaker-0: They need to say like two and a half years before the deadline to cut you off as
speaker-1: And for some reason it just wasn't like I didn't schedule it my last appointment, so maybe that was on me. But I was just like
speaker-0: No, they won't schedule that far out. that's true. I can't even schedule Dawson's six months appointments out. That's true. No
speaker-1: Okay. That's I was like stupid. I was like, I this is ridiculous that I have been her patient and y'all told me to wait three years and it's not quite been three years.
speaker-0: Yeah.
speaker-1: We've got it fixed and it was fine.
speaker-0: So fun. So what would you say would be some good practical tips to share? Cause you know, I know there's a lot of us out there that I think there's people I know that have a way better handle on organization and structure of all the things they have to do with with, you know, than what I do. but then you know, I feel like there's some, you know, maybe new parents that are still trying to get their feet wet, figure this out. Like what would you say are some good practical tips? for those still trying to get the handle on things moving forward to help them maybe stay more organized and deal with all the things we have to deal with.
speaker-1: It's so hard because sometimes personalities just are such a big difference when it comes to that stuff because I'm like, You have your title.
speaker-0: excluding the type A people because we know they got it down. We
speaker-1: Yeah.
speaker-0: love our type A people. I know they're not
speaker-1: Everything is in its place and everything and I'm like I'm type B pretty sure I have some AD. you're like you type A people, y'all y'all got it going on. Good for you. I mean
speaker-0: To learn, we need to have a type A person on that can just tell everyone what they do all of our lives easier.
speaker-1: I know, because you're like telling me to You're telling me to give tips and I'm like, yeah, true.
speaker-0: Sure. I just use a Google Calendar and that's it.
speaker-1: Pile of papers that stacks up in the corner. Yeah, I don't know. I've been
speaker-0: You said that one thing about, and I think this is maybe something some of us don't do is the second you're talking to someone or you get off the phone, you put it down. Yeah, yeah. That way you don't forget. Sometimes I will talk to someone while I'm driving because where I live I have to drive freaking everywhere. Yeah. So then I can't always do stuff while I'm driving right afterwards. So then that causes a problem. So you know, finding a way to do it. instantaneous if possible is definitely gonna make a difference because you don't get distracted and forget.
speaker-1: Sometimes I feel rude because I'll be talking to somebody and we've made an appoint so like Lincoln's indocrinologist appointment or you know, whatever it is. And I'm like literally on my phone and I'm putting it in while I'm talking to them. I'm like, I'm not being rude. I'm not texting somebody. I'm putting this in my calendar because I know myself. And that's the thing. Do you know yourself enough to know are you gonna completely forget this? Do it now. Do it right now.
speaker-0: Just be more aware and cognizant of like what needs to happen in those specific moments to kind of just make things a little bit structured and a little bit more user user friendly.
speaker-1: Yes. I don't know. If you do not have a you know, I I the planner worked for me for a long time, just having it in my bag, but then it just got to where it just was easier for me to have my my calendar on my phone. and I look at it every day multiple times a day too. and I I I I know that probably sounds crazy, but it could just I just gotta know what's going on and I gotta make sure I'm not missing stuff. Ugh.
speaker-0: that cuts down the stress load if you do miss something and then you know you're not going to.
speaker-1: Yeah. Because I've missed many things in my life in the past. Because I didn't write it down.
speaker-0: I think the for those of you looking for other options out there, I think the American Academy of Pediatric Pediatrics also offers like parental tips on organize organizing care and stuff like that. So that's definitely a resource that there's and we'll we're gonna touch some more on those in a few minutes, but there's definitely more resources out there that those of us that really need like those extra steps in care, especially if you're a single parent or things like that going on, that will Help you set yourself up for success when, you know, our world gets overwhelming. Because let's face it, it's always going to have its moments where it gets overwhelming.
speaker-1: Yeah. I and I think just organizing your files and papers and all those things, like you just need to have a spot for everything. It 'cause
speaker-0: Yeah.
speaker-1: if not, I you lose it and it gets lost. And it gets
speaker-0: Everything is like Is there like one thing that you could get taken off? Like someone else would just do it for you off your like checklist, mental load of what you have to do for, you know, care coordination. What would it be?
speaker-1: my gosh.
speaker-0: And you can't say everything. That's not feasible. One thing would be more, you know, possible.
speaker-1: know maybe maybe like the supply of it would be would help a little bit just just like Lucy's monthly supplies that she gets just making sure they're reordered and everything's good to go with that. And then Lincoln's his growth hormone stuff like that was a pain for me for a little while and it's gotten better now. but For for some reason we got a three month supply this time. So I don't know what changed because we went from a monthly supply and then all of a sudden this last time they gave us three months. And I was like, okay, well, that's nice. So I just keep it refrigerated. But that's not like a huge, huge burden for me necessarily, but it would still just be one thing that I just wouldn't have to worry about if I could just have somebody else do that.
speaker-0: Yeah. I wish everything would just be in one place where I didn't have to want the be the one to put it there. Like where everything would just magically sink or someone else could just do it. So then I could just look at the my calendar and be like, okay, I got this, this, and this and this. I wasn't the one who had to facilitate all the stuff getting it there. Yeah. If that makes sense. That's basically like you know, needing an office manager. Yeah. A
speaker-1: I don't know.
speaker-0: lot of us that would just be able to benefit greatly from just having our own, you know, manager. Yeah. To put all of our
speaker-1: That's what thought you were talking about when you were talking about what we were gonna do on this episode. And I was like, no, I'm like, what do you mean, care coordinating? And all the You're like, but that
speaker-0: Is there a person?
speaker-1: does that, you're like, it's you, you are the one that does.
speaker-0: You're the care coordinator. Yes.
speaker-1: my blonde moment.
speaker-0: Yeah, 'cause hospital care coordinators only do specific things. And they don't do near what I do, so
speaker-1: Yes. Yes. And only for their hospital. Yeah. Which I I'm I'm thankful for our coordinators that we have at our hospitals 'cause there's, you know, there's so many tim now, you know, Lucy with her fusion, she won't get her rods lengthened anymore. So that's at least one less appointment that we have to worry about. That's nice. So that is nice.
speaker-0: So there are places where if you find that you are in just a rut, you're struggling because there's so much and you feel like it's piling on so much. I did go to this website and it is called Family Voices. And there is one, I it's for the whole country. I think it is every state has this as an option. And it's basically it's a family led family to family health information center. And you can go based on where it is for your state, and you're able to Find resources and help for all the things that we deal with like this, in that regard. And of course there's pla there's things that I know more that's in Texas, since we're in Texas. there's two one one Texas that you call. there is Texas Parent's Parent, but I know that there's so many things available in each and every state out there. You just have to basically go on and do a quick Google search to find all of these options and it's Really going to help facilitate that aspect of care coordination. I wish some of this stuff I would have known about when Dawson was born and I was just juggling everything. And it you I was just so overwhelmed there early on because we didn't have insurance and I wasn't working, which was great, but he still needed nursing care and he needed all these things and it was just my wheels were just spinning nonstop. So this would have been, you know, a nice and this was when, you know, he was at the doctor all the time, but then we had therapy in the home all the time. It was I had and this was when I was still like in an analog world where I just had my hard calendar
speaker-1: Yep.
speaker-0: and atorite really small because every square was like filmed to the max. It did work. But that's also because that's all I did. Yeah. I didn't do anything else because I wasn't working. But it was still overwhelming. And if I would have known more about some of these options, I think it would have definitely made a difference in those moments where I just needed extra support.
speaker-1: Yeah. Yeah, that I agree. That would have been nice to have known some of these things because you kind of just feel like you're just having to figure everything out on your own instead of
speaker-0: Being like
speaker-1: I can actually get a little advice or some tips or some help with
speaker-0: Yeah. Especially the stuff that's parent led because you know they're definitely gonna be the ones that are gonna explain things because they get it. I feel like a lot of times when things are like more from a hospital mentality, they're good at giving you things, but it's like, okay, here's a printout, they hand it to you, have a nice day. You know it's just they're doing the bare minimum because they have to, but they also see, you know, five million patients. So, you know, there's also a line on how much they can actually realistically do.
speaker-1: Two.
speaker-0: What would you tell a parent? Is there something that you would tell them who feels like they have to manage all this alone? One word of advice. One word? Not word. One word. Why did I say that? One key
speaker-1: Yeah.
speaker-0: phrase of advice. One word.
speaker-1: Sorry. Sorry you feel that way.
speaker-0: Ha ha
speaker-1: Yeah man.
speaker-0: Hold on, Bugo, yeah. No, not one word. One means the same thing. People always say what's one word of advice you would give someone and that means like good advice. It doesn't mean one word. You took that wick.
speaker-1: Way too literal. Okay. I don't you know, if depending upon who you're, you know, doing life with, you know, if you are fortunate to have a spouse that that can help you, you know, try to see be like, okay, these are the things that I'm I gotta take care of and I'm gonna do, but I need you to do this and this just to take the the the burden off of me, you know
speaker-0: No, it's true.
speaker-1: or whatever because and and it's so hard because because sometimes you might be the control freak in the relationship and you want to do everything but
speaker-0: Then you're wearing yourself out. Maybe
speaker-1: You don't have to do everything and you can you can kind of at least unload a few minor things. Even just the smaller things that you have to do, not having to worry about them can take a load off.
speaker-0: definitely. You know, and I feel like it's easy for there to kind of be a default parent. And in not all cases, but a lot of times it tends to be you know, the mom and the relationsh you know, it's just how it is. But there's nothing wrong with being like, Okay, you you gotta do this. You know, it's actually good about we rotate doctor's appointments because there's just no way I can be the only one that takes him to every single appointment. Yeah. You know, it's just it's just not feasible because we His appointments are so far, and if it's a school day, by the time we're done, he'll have like an hour left of school. Or if we take him, you know what I mean? Like it's just not worth sending him to school in those days because we have to go so far. So then he has to go home and we just have to hang out with him at home. So basically we almost missed a full day work
speaker-1: Yeah.
speaker-0: too. And there's just no way I can realistically do that. So it's nice because he is able to rotate and it's not just me all the time going. To every single doctor's appointment. I know that's not always possible depending on people's jobs, depending on, you know, all the things. But that is definitely one thing that, you know, we do that does make a difference. Yeah. I would say for those that don't have the option of a spouse or someone who's, you know, able to do specific things like that, you know, if you have a another family member or a friend, even if it's just to keep yourself in check to make sure you're keeping up with all the things, like share a calendar with someone. You know, that's such an easy thing. And then, you know, you have someone that's just like, don't forget you have, you know, this appointment tomorrow or you have this. And I know that sounds weird to think about sharing a calendar with someone who's not like a spouse or someone like that that is helping you with these things. But if that's what it takes to like just help keep you accountable for all the things we have to do with, I think that that's, you know, worth looking into.
speaker-1: But it is it's it's hard because if you are not naturally a natural organizer, I mean you really have to just discipline yourself
speaker-0: Yeah.
speaker-1: to to do that and to write everything down and to keep everything in a good spot. and you know, it's because if not, you're gonna you're gonna miss things, you're gonna drop the ball, you're gonna you know. Yeah. yeah, 'cause that is not my natural tendency. Not
speaker-0: Yeah.
speaker-1: either. I don't know whatsoever. I can
speaker-0: Funny how we're both not I mean most people say that like the firstborn daughter is like gonna be more type A person but I'm not I'm not that person. I just not. And we both ended up being more kinda chill about things.
speaker-1: Yeah. Which I do like I I do like some organization, but it's not like it's not extreme. Like whenever I see type A, like whenever I would go to like people's classrooms that are definitely type A teachers, I would just be like, my
speaker-0: My gosh.
speaker-1: This is not how I yeah.
speaker-0: These type A people are dropping the ball on like a side quest where they could like, you know, make a little extra money on the side. 'Cause I guarantee there'd be plenty of people like us out there that would be like, Come into my home, set up a system to make things function better.
speaker-1: They're they're not doing There has to be people that do that. I'm sh
speaker-0: I haven't Googled it, but you know, I'm sure that's
speaker-1: There are people that are like I am amazing at what I do. I will help you. Help me.
speaker-0: Is there anything, and we're about to wrap up. Is there anything like starting out like, you know, early on with Lucy and all the things that you wish that you would have known sooner?
speaker-1: It's gonna be okay. You're gonna figure it out and it's gonna be okay. It is it's hard whenever you get that first diagnosis and it's just cause you're having to deal with the weight of of your kids' diagnosis to begin with. Yeah. You know, this human being that you love so much and you it just breaks your heart that they're having to go through this life with this disability, no matter what it is. even if it's even if it's something that's not, you know I I mean, I don't know what I'm trying to say, but something that is maybe even not as you're like, well, it's it's not that big of a deal. It's okay. It's your kid
speaker-0: Yeah.
speaker-1: and you and it's that that first, you know, just year or two and you I mean, you're almost in a depressive state because
speaker-0: Yeah. Depressive and survival.
speaker-1: and survival mode and and you're just trying to juggle everything and you're trying to figure out How to live this life of special needs on top of being a parent for other kids that you might have. And you know, it's just it's gonna be okay. It's
speaker-0: Yeah.
speaker-1: it's one day at a time, and you just end up figuring it out and and you know what?
speaker-0: With finding extra help and care. Yeah. Some of the resources out there. Yes. Give
speaker-1: Go get help. Go
speaker-0: yourself a little bit of of a break on having to organize everything just to make at least one area of your life a little bit more manageable. Well hopefully
speaker-1: And hopefully somebody has somebody maybe with a similar diagnosis that maybe has already gone through it. Yeah. Call them up. Be like, hey, what did you do? How did you manage this? And you know, ask advice from other people to help you figure out how to platform.
speaker-0: It's such a good for that. You could probably go to any page, and I'm sure all of us that are on social media somewhere have these pages we follow. Yep. You could ask any parent in there, and that is one good thing about you know the special needs community is the parents are gonna let you know. We gonna talk, we're gonna give support, we're gonna tell each other what we do, what didn't work, because we we have definitely been there. So that is not an area I feel like we all fell on being able to. To tell people things that they think is helpful because we all relate.
speaker-1: Yeah, if you are not a part of a group on Facebook, I would definitely suggest because there's there is a page for no matter what the diagnosis is, no matter what it is, there is a page on there. And there are people that have been, you know, they they've been doing this for ten, fifteen, twenty years. Yeah. And they have such a wealth of knowledge that they can give people. And you gotta find it keep.
speaker-0: Stuff. And that
speaker-1: Very open about yes, very open and honest about just everything and then wanting to help. Like if you if you are, you know, newly diagnosed with SMA, give me a call because I will tell you all the things.
speaker-0: Gonna give everyone your phone number?
speaker-1: Wheel. they can have a
speaker-0: Eight eight five three hundred empire.
speaker-1: That's your phone number? my gosh, I haven't I haven't thought of that in a long time.
speaker-0: Wow.
speaker-1: We can have a Google number to call if they need a chit chat.
speaker-0: know if we're gonna answer all the time. We're a little busy. Leave a voicemail and we'll call you back.
speaker-1: I have time. Sometimes I'm just cleaning my house and that's all I'm doing for the day. It's wonderful.
speaker-0: You could just vacuum and talk to someone on the phone.
speaker-1: I do.
speaker-0: Well, that is all that we have for y'all today. I hope that maybe y'all were able to hear something that would maybe be good advice, something that you know y'all felt like you could relate to to know that we are obviously all dealing with the lovely aspect of care coordination on a regular basis. The same. but yes, we will definitely we're gonna put some resources that we talked about today. I'm gonna put some on the Facebook page so whenever people are following up with this episode, maybe they could see some of those options and if some of y'all are just in desperate need of some help, reach out to us or any of those options that we would put on the Facebook page.
speaker-1: Even if the care coordination never seems to end, I can still ask for help carrying it. We'll see you next time.