Episode 8 - The Cost of Keeping It Together

speaker-0: Welcome to Even If the Special Needs Parenting Podcast. I'm Michaela.

speaker-1: And I'm Maraya.

speaker-0: ⁓

speaker-1: Statistics can tell us how many parents are struggling. They cannot show us the parent who braces before opening a bedroom door, the parent who cannot leave the house, or the parent whose whole life depends on keeping a systole moving. Today, the parents who responded to us are going to tell you what that struggle actually feels like.

speaker-0: Hey everyone, we're so glad that y'all are here today. So the layout of this episode is going to be a little bit different because we're talking about mental health inside long-term caregiving. So we're going to talk about burnout, the chronic stress, the anxiety, depression, the trauma, the grief, and the crises that are related, but not all interchangeable. So we asked on social media for people, listeners, ⁓ to give us comments about things that they struggle with on a regular basis that they feel, you know. Just directly equates to their mental health. So what we're going to do is we're going to read the comments anonymously, but they're going to be word for word because we want people to really truly grasp and understand what we as caregivers go through. So before we talk about that and get into the episode, we're gonna start obviously like we do every with our why did you cry this week? Okay. So why did you cry this week? I feel like I have

speaker-1: Week. a few. my b I guess my big one was I'm sure you saw whenever they fixed the ramp at the back of the this week. That was that was my big one.

speaker-0: Yeah, yeah I wanna I don't wanna say what I wanna say. I wanna say what I wanna say.

speaker-1: I know. It was completely out of the blue. It was nothing that I was even expect. I mean, it was a complete surprise because we have talked about this. We have talked to different people. We have asked why we can not get this shrimp. Like, why is it so hard to get this shrimp? Like we have tried

speaker-0: I know where she crosses the street to go to school. So what has she always had to do when she goes in her wheelchair to school? Does she have to go the long way? Does she have to like drive around the curb around to the front?

speaker-1: So they have I mean for s for several years now the the crosswalk person would just bring a manual ramp down.

speaker-0: And then they would just put it down and pick it up.

speaker-1: They would just put it down for her and she would use it and then they would pick it up. And it w it's not like a super heavy one, it's just a little bicep. ⁓ but that's what they've done for years. But then the problem was if for some reason they forgot it or there wasn't someone that was back there, then she would go down the street and have to come around to get on the sidewalk. And so it just was like this random thing and our principal called me. And so of course when I saw the principal calling me

speaker-0: ⁓

speaker-1: ⁓ my gosh, what is r like happening?

speaker-0: Why is my what did my kid do?

speaker-1: No, I wasn't because it was it's the it Lucy's the only one in junior high. So it was the junior high principal. So I was thinking sh something was wrong with her, not she was in trouble. But I was like, ⁓ no, I'm gonna have to go pick her up. And then ⁓ she left a voicemail because I didn't get to my phone in time. And it was just like right now and I was like, What? And then it was immediate tears. It was great. Yay.

speaker-0: Ha ha They're putting the ramp Yeah. Yeah, and I got to see the video of her using it. It was awesome. Yeah.

speaker-1: And the dirty look she gave me at the end. She Well, not dirty. She just she was just annoyed with me. She liked turned around over her shoulder.

speaker-0: He gave you a dirty look? Teenager. Why would she not? That's funny, but definitely a good reason to cry. Yes. It was I know. I had well, I was emotional all day. I don't know what it was about this year, but I was very emotional when it came to 9-11. I feel like I saw and heard more stories than I had heard in the last 25 years. Yeah. Like there was stuff I had never heard before. And it was just ⁓ it made me very emotional more so. But the big one that made me like ugly cry. I was watching, I think I was I think I was doom scrolling on Instagram and I was watching Reels and there was a mom and I can't remember exactly how she worded it, but she was like, it was a she was at a Wiggles concert. I don't know if everyone knows who the Wiggles is, and she was like, This is your view of the concert. And then she panned it to her special needs son and she was like, This is my

speaker-1: view and he was just so excited and just and I've some of those reels will get you. I know

speaker-0: I just ugly cried. I lost. No, I know, but it was such a beautiful moment. And I'm just like, you know, relate to that so much when you can find that one thing that just makes your kid just love life and be so happy. So anyway, yeah, that was a big one for me. Crying in general, the things that we go through on a regular basis are things that like overall statistics, you know, don't show the world, people in general. They can't count distress. They can't show the moment when, you know, we finally break. But There has been research and there is statistics and numbers when it comes to mental health and burnout in regards to special needs parenting. So there are a couple that we've pulled that are just kind of in general when it comes to special needs parenting. So ⁓ the first one is in 2024, the US Surgeon General Advisory, 33% of parents reported high stress. Compared with 20% of other adults. 48% of parents said that their stress was completely overwhelming on most days, compared with 20% of that of other parents. So another one in 2021, a US study found that about one in five parents of children with medical complexity reported fair or poor mental health, more than five times the rate among parents of children without special health care needs. Another one in 2025. Found healthcare financial hardship in 22.3% of families of children with disabilities compared to 12.6% of families of children without disabilities. And then in a 2025 global review of 40 studies involving over 13,000 caregivers, found that 45% of caregivers of children with autism experience depressive symptoms. So obviously, these numbers show. You know, an overall trend. Yeah. They show you know, they show that it is it is a real thing and it's it's a real thing that we deal with and that we struggle with on a regular basis. But obviously, numbers can only show so much, right? Yeah. They can't show really what is going on behind closed doors and what we deal with day after day after day. I mean to a lot of people they just look like numbers on paper, right? So

speaker-1: Yeah.

speaker-0: What we decided to do was we went on social media. ⁓ this was not one I participated in. Normally I go on and I say something too, but we asked everyone to leave a comment about something in their life with their kids that affects their mental health. And we actually got a lot of comments. And it it was really hard reading all the ones that were submitted because there was a lot that I definitely related to. And then there was a lot that I was just like, I I can't even ma imagine what it would be like to have that, you know, specific added stress or you know, in what I already have going on as well. So we're gonna read them verbatim. We're not gonna ⁓ sugarcoat them because I think it's important for all parents who participate and everyone else that's listening to hear, you know, the real struggles based on their real words.

speaker-1: Yes.

speaker-0: How they feel about these specific instances that they deal with on a regular basis. The first area, I would say, they're they're I don't want to say that they're labeled in topics or category, but there's kind of like an overall theme with a lot of them throughout. So the first one is basically parents and how we always feel judgment, guilt, and self-doubt. So the first listener commented. And remember, this is like the things that like affect our mental health. Yes. Is people's opinions of what they think you should be doing different and how much you take that to heart because you're doing your best.

speaker-1: Thank you. Second comment was I know my child, my parenting, my choices and decisions have been discussed in many homes and private spaces. It hurts my heart so much that it's something I rarely even talk about. I have to pretend it eas it isn't so just so I can protect my mental health and continue to live in my community and leave my house. There was a time when I didn't have the strength to leave my house because of the scrutiny from others and paranoia within myself. Unless you've tried to raise a child with FASD reactive attachment disorder and complex trauma, you can't fathom how devastating it is.

speaker-0: The third comment is the guilt you feel when something nasty or dangerous goes in your autistic child's mouth because of their severe sensory issues, when you literally only turned away for a second. And then also going to bed every night, feeling like you should have done more or better, but so exhausted you can't think.

speaker-1: And comment four is the overwhelming feeling that you should be doing more when they aren't your only child, depending on therapy appointments, so that at least you know they got some one-on-one time to do exercises.

speaker-0: And comment five is I have severe anxiety about looking like I don't care enough. So I mean, sadly, all of that kind of points to like outside judgment, right? Because let's face it, all all parents get outside judgment in some way, form, or fashion or another, regardless of if they should. But I feel like us in this dynamic, especially when it's parenting, we really do. And I feel like with us it it makes it harder because we get all these outs these these outside judgments and then it becomes an internal voice, even when we're already doing everything that we can to survive. Yeah. What do you think the difference is or what should the difference be between responsibility of our, you know, that we have for our kids and then the belief that every outcome is the parents' fault? Do you think we just carry criticism too much long after someone has said something to us and we shouldn't? ⁓

speaker-1: I mean, I think so, especially if that person is definitely not in the same situation that you are. I mean, it's you don't I don't understand why people would say something to another person in w in regards to how they're to something that they can't relate to. It's kinda like, you know, ⁓ maybe just don't have your own opinion about that because you don't know what I don't I and I know that's hard for you to just be like, Well just let that roll off your back and don't let it bother you. ⁓ because people take things to heart. And then sometimes

speaker-0: Yeah.

speaker-1: Do people actually say things or are you perceiving that they're thinking that? You know what I mean? Like some of ⁓ I mean, some of these comments definitely you can tell that they actually have said things. But then I feel like I can get it in my head that maybe people think things or say things about me when no one's ever s even told me anything. It's just me in my head thinking I'm not doing enough.

speaker-0: Hundred percent.

speaker-1: And so therefore other people must be thinking I'm not doing enough.

speaker-0: you know, and it's that old saying, sticks and stones will break my bones, but words no words hurt more than anything. I mean, I can remember stuff people said to me when I was in elementary school. Like there is stuff that sticks with you for life. And then when it comes to our children, the people that we care about the most and that we have taken on this huge role for, yeah, we're gonna take to heart when we feel like people don't think that we're good parents and doing our best. Which isn't fair. You know, it's not fair to us. It's not fair to our kids for people's opinions and thoughts about things to carry that much weight.

speaker-1: Well, I just there's already enough stress. There's already enough just pressure and anxiety and things that you're worried about with your own kids. And then whenever you feel like you have judgment and things from outside sources and people and people probably that are your friends or are supposed to be your friends, that's just adds on to it.

speaker-0: Yeah. Yeah. Yeah, it's definitely harder to hear it from family and friends who you think, ⁓ well then they know me. So maybe I am doing something wrong. Yeah. Because they wouldn't tell me that if it wasn't true. And sometimes those are the people who say things that's the most hurtful. And at the end of the day, they still don't know because they don't walk in our shoes. So the next area from our listeners comes in regards to trauma, anxiety, and constant alertness.

speaker-1: Yeah.

speaker-0: So the first comment says, I have severe OCD from before babies and now CPTSD from birth trauma that caused our twins to have special needs. Our four-year-old is also special needs. I've always worried that I'm not doing enough. What else could I do? What did I do to cause their special needs? My biggest fear and the constant anxiety that someday when my husband and I pass, that they will understand and they will think that we just abandoned them.

speaker-1: This next comment is ⁓ says CTPSD and severe anxiety from his hospitalizations and procedures. We saw things happen to him that no parents should.

speaker-0: should have to see. The next one is anxiety that never goes away.

speaker-1: And then every time my child is dysregulated, it takes so much out of me emotionally. It takes me hours to recover.

speaker-0: So I mean that just goes to show that even though at the end of the day it's our kids that are facing, you know, hospitalizations and procedures, that there's so much trauma that we face as parents that comes from their births, the hospitalizations, the emergencies, repeated dysregulation, like it no one prepares you for what that's like in those moments. You know, it's just something we have to learn to figure out on the fly and just deal with them as they go.

speaker-1: You

speaker-0: And I think it's crazy how the body can stay alert after it like an event has ended. Like, you know what when things have finally calmed down and things are kind of back to normal and baseline, I I I've experienced that. I still feel like I'm constantly on alert and I'm just waiting for the next ball to drop, even though things have actually calmed down and are back to normal.

speaker-1: Well, you went just so many years in a row with Dawson from birth to getting his tube in and just was in the hot and then what? Every January. Every January you just like had this trigger go off. You're like, what is gonna happen? Something's gonna happen this month.

speaker-0: We skip January this month.

speaker-1: I go to February. Yeah.

speaker-0: And it's really crazy 'cause, ⁓ you know, you hear about PTSD. It's a it's a it could be a buzzword for some people, you know, and but whenever you think about it and truly know what it means, it's still different when you truly experience PTSD ⁓ something that you can't control and how your mind is reacting in that situation. And like I ex I I don't know if I've ever told you this. I actually experienced it for we for real one time.

speaker-1: From

speaker-0: ⁓ so it was kind of in regards to that, Dawson, trauma, hospitalizations, all these things over and over and over and over. And it, gosh, it was years after the fact. It was after we had moved down here. He was still going into the hospital for procedures and surgeries, but it wasn't like emergencies and real illness like it was for a while at first. And it it brought me back. We we took him in for a procedure. You know how they they take the kids and they go through the doors. And the doors close behind them as they go into the OR. Yeah. And like it I had a I'm I can't even explain it besides I had a flashback. And it was like a real traumatic flashback to where that one time when he was in, he was they took him to the OR every single day. And every time he went, I didn't know if we were gonna see him again. I didn't know if he was gonna come out alive or not. And I felt myself start to hyperventilate. Like I could feel it like It was it was the craziest reaction and it made no sense because this had happened other times before and I didn't have this visceral of a reaction. So I had to like book it out of there and try to catch my breath and calm down because it like it was a legitimate re like mind-body reaction that I'd never experienced before. And I actually had messaged a friend that has his PhD in psychology and h his background is in PTSD. So I brought it up to him and he's just like. The brain is so crazy. Like there's no rhyme or reason as to why one specific event could trigger something. And I'm like, I just, you know, you hear about PTSD, but then when you s when you experience it for real, it is a whole it is a whole different experience.

speaker-1: Yeah. Yeah. Cause I know for a long time I I've always had heard it more in military background, you know, for sure. Sure. That that's the only time I really ⁓ would associate it. And and then it kind of became this thing that ⁓ was used in other areas. ⁓ but I mean, anytime you have a traumatic situation, like there is going to be some sort of post traumatic stress that comes with it. Whenever you have situations like you had with Dawson, where I mean he's spending a whole month in the PICU and you don't I mean, we didn't know what was gonna happen with him. I mean that that just it's just so scary.

speaker-0: Yeah. Well, and I think a lot of the problem with us is is that we survive so many things physically, but we don't have time to process it emotionally. And that's where a lot of PTSD comes in, is because our brains have no time to process these situations and scenarios that our kids and we're thrust in on a regular basis. And when it's day after day after day, yeah, you're just in survival mode and your brain is just overwhelmed and then Out of the blue, these things hit you because you've never had time to actually process them, you know. Yeah, and you really

speaker-1: Yeah, a therapist or somebody to counsel or someone to just really talk to and a hundred percent. ⁓ but who has time for that? Ain't nobody got time for that. When you have your your kids have therapies and stuff they have to go to. Yeah. Things

speaker-0: Multitask. You're going to your therapy and mommy's going to her therapy. So the next area is in regards to safety, isolation, and limited family life. The first comment is guilt and the worry about if I leave this world, what will happen to him? I have anxiety so bad around crowds with my child. He is a runner. So we don't go many places because of it. And I feel so bad. 'Cause he isn't getting a chance to experience things like other children.

speaker-1: The next comment says Seclusion. Your life revolves around them and their needs. This may mean public bathrooms, toilets, and hand dryers are too loud and the lights can cause overstimulation, as well as the amount of people. This means limiting these activities or breaking up the family. One person stays home, the other per the other parent goes. It means not going to as many of the other children's activities or going to Christmas programs, seeing your child do things and looking around at people giggling or commenting. Is my child a mockery? Is this more harmful than good? The constant fight for the right services in place and supports. The picking your battles. Is it worth a fight of making him wear his shoes? He he don't like them. ⁓ what about the sleepless nights? Their sleep patterns are a mess. The nights he wakes up at two AM and is up till seven or eight and then crashes, so you keep him home from school because he needs sleep. He is not getting or you are not getting as well. The constant vigilance to ensure their safety. Hold hands while walking. That's a fight. Or wanting to go to the toy section. You need to get groceries. Or you heard the front door. Did he just go outside alone? He has no fear for danger, so cars and walking out in front of them or the bridge with water under it down the street. Everyone knows they are drawn to water. And one of the higher reasons of death for them is drowning. Then there's the food, and they only eat certain things. What if the store is out of what you need? So you stock up and you try not to get too low so that if it happens, you have something to the store restock.

speaker-0: Yes The next comment the loneliness because staying home is easier than going out and no one just visits your house. I truly feel like a zoo animal stuck with my baby in a cage.

speaker-1: The next one says constantly questioning if you are doing things correctly, worrying that in a meltdown you or your child will get hurt, fearing your child will be charged with domestic violence because they are getting older, but still having major meltdowns, the lack of access to resources, especially if you are on commercial insurance for you as well as your child.

speaker-0: category, the safety, isolation, limited family life, like that's that is a tough one that so many of us navigate on a regular basis, especially the one comment, ⁓ you know, talking about the kiddo with autism, where I mean it just sounds like she's she's she has to be on all the time, thinking of every single possible scenario or anything that they do when they go into public. And that is just exhausting.

speaker-1: Yeah.

speaker-0: Day long. And sadly, the world is not friendly for all of our, you know, little friends that that fit into this life. You know, there's a lot of environments and places that at the end of the day are just not safe.

speaker-1: No, and and you know, the kids with autism, a lot of times, you know, they they look like a normal kid. And so sometimes people just aren't as understanding and as sympathetic with those kids. Because especially I feel like the older generation, like I just I you know because it's like as we grow and as we develop and we learn more things and we have more diagnoses and things like that, you know, that wasn't around. or it was around, but there was not a name for it. And so then whenever you have kind of now this shift of understanding what autism is and how you know, you know, and and I don't know, a lot of times the older generation sometimes is not as sympathetic and understanding those kids.

speaker-0: Around it just didn't have a name for it. Understanding. kids. Yeah. Well, and I talked about that in previous episode of, you know, in our some of the small towns we live with Deacon where it was just it's that same mentality. Just bait Just get my good old whoop in and I don't know, it's not how that works. I hate to break it to you. So what do you think are parts of I'm doing air quotes because I don't want to say ordinary, because you know, what's ordinary? ⁓ what parts of ordinary family life for special needs families

speaker-1: Yeah. No

speaker-0: require an exhausting amount of planning for us to do. I mean, just leaving the house for one. If we take Dawson anywhere, we have to take half the house. So much stuff. There was one time I literally left the house without his freaking wheelchair. And I'm like, well, that's not gonna work. Turn around and go get it. And our day was ruined. I can't carry them everywhere. Just

speaker-1: Yeah. Yeah, I've done that before too. But I mean, it is, you know, you think about whenever you have a baby, you you you have that time frame where you are you pack and you bring everything. You're packing a change of clothes, all the diapers, the wipes, food, snacks. ⁓ I can't even think of all the other things that you pack. But then as they get older, you don't have to bring as much stuff anymore. But, you know, whenever you have a little Dawson, you I mean, you gotta you gotta ha potential for or you gotta plan for everything, every outcome. Yep.

speaker-0: Yep. Well, same with the kiddos on, you know, the spectrum and those with varying needs. You have to think of every possible scenario that you could be in in that moment and what you're going to need or what happens if he has a meltdown and you gotta have this toy or you gotta have this snack. Like it's it is a lot for our brains to constantly be just thinking about every scenario every second of the day, or even just to leave the house that in reality should just be an easy thing to do to just, you know, walk out to your car and get in.

speaker-1: Yeah. Not that easy. And okay, I wish I was more ⁓ good time management because if I could just go get in my car and leave, I might make it to places somewhat on time. But I'm usually like, you know, having to put shoes on and this and that and then get the wheelchair and load this up and do that, and then I'm like, ⁓ I'm late.

speaker-0: But sadly that is not the case. Well, you know. I've had someone tell me one time I was like consistently late one week to work and it was because of Dawson and I don't want to blame stuff on him, but it was. It was like he had a bad night and then he was struggling in the morning. ⁓ well he had a blowout in his diaper or he threw up, ⁓ he had a seizure, or just something you know, and I just remember a lady that I work with and I'm just like always late, blah blah blah, whatever. I'm you know, not retelling the story very well, but She was just like, get up earlier so you leave your house earlier. And I'm like, if it was that simple, do you think I would just not do that? Like I know and I I wasn't rude about it, but I was just like even if I get up at three, I still have to tend to him. It doesn't matter. Like

speaker-1: You're like him throwing up right before it's time for me to get out the door doesn't make any difference if I wake up earlier. Nope.

speaker-0: It does not. And then I'm just more tired and cranky. Yeah. Cause I didn't get as much sleep. Yeah. So the next area is in regards to care coordination coordination. Systems and access. The phone calls, emails, text messages, etc. to communicate with all the providers, the behind the scenes organization that keeps the wheels rolling for things that are necessary for everyday life. The time spent trying to coordinate care. The frustration that comes with this part of parenting a child with exceptional needs on top of the physical exhaustion causes more burnout than anyone on the outside could ever imagine. It is the biggest responsibility in my opinion, and the one that doesn't get to be seen or recognized.

speaker-1: The next comment says management of therapies and doctor appointments and guilt when the right therapies aren't available or are too far away, the financial burden associated with therapy.

speaker-0: Peace. The next one says it took me three and a half months to get PT and OT evaluations, prescription, treatment expri prescription, et cetera. And it took me calling every single day. It's exhausting.

speaker-1: The next one says stress, the constant weight of fighting the entire world for your child's right to exist in it. Have to fight the school for accommodations, have to fight insurance to pay for things they need, have to fight the child themselves for things they need. Have to convince people that inclusion and accommodations are important. Have to fight cities and corporations for something as simple as being able to go into a building. The stress and exhaustion caused by all that is destroying my body, honestly, as well as making it hard to ever actually feel happy.

speaker-0: Legal issues with IDD and autism.

speaker-1: And the last one says lack of sleep, anxiety, and insurance.

speaker-0: This is probably one of the areas, and this is just my assumption that a lot of people that do not live in this world truly, I think this is one of the areas that they don't understand. Yeah. The constant fight for everything non stop. It just never ends. Like it's, I mean, care coordination is real. I mean, there's literal jobs that people call care coordinators, yeah, who work for hospitals and all these other places, but. That is all we do on top of just regular everyday life stuff. We are literally our children's care coordinators, but we're just not getting paid for it.

speaker-1: It's a lot. And and a lot of times, you know, y if you're busy doing other things and you do miss a phone call or, you know, whatever, you play phone tag or and I like ⁓ or that one comment about the therapies and stuff. We we owed so much money for therapy last year and I just was like, I don't understand wh why our insurance isn't covering all this. So we didn't do it. We we got out of therapy for a while. Well I mean now it's been months. And then of course now she's had her back surgery too. So she still hasn't gone back. And so that's that's one area where I I feel that the weight of the care coordinator, but then also I feel like I put so much pressure and judgment on myself because I haven't had her in therapy in months. Terrible.

speaker-0: Yes. I feel but then again it goes back to insurance and having to fight and the fact that we're already paying a crap ton of money out of our regular paychecks for insurance. Why is that a not not enough to cover the fact that it's need basic therapy just to do basic functional skills on a regular basis?

speaker-1: Yeah, like our therapy, our art insurance is like, ⁓ well, they have thirty-five therapy visits. It's like out of an entire year, my child gets thirty Yeah. Out of it well, I mean out of the year, out of the year, it's like thirty-five visits. And that's the thing is the be what frustrates me is always the beginning of the year with insurance stuff because it's just like everything starts over and everything's zeroed out. Yeah. And then by this time of the year, it's like, We're fine. But then by the time everything gets finally situated and it's like October, the the new year is starting up and we have to start all over again. And we have to do the same thing over and over and over again.

speaker-0: again.

speaker-1: Here we go again. It's a new year. Happy New Year. ⁓ great. My deductible's back down.

speaker-0: Right. to nothing. Well, and you said it's how many thirty five therapy?

speaker-1: I'm pretty sure she gets thirty five therapy visits.

speaker-0: Not even one visit a week because she's like fifty something weeks in a year.

speaker-1: 52 weeks in a year and she was going she was going twice a week. She was doing two 30-minute sessions twice a week. ⁓ so they were counting quick, they were counting even a 30-minute session as one of the 30 35. So it would be like maybe June, and they would be like, ⁓ well, you don't have any more therapy sessions left. And it was just like, what?

speaker-0: You're like, can I just pay for one then? That's frustrating. Well, and then just when it's nonstop over and over, repeated denial, the delay, the advocacy, the fighting for everything. I mean, there's there's gonna be so long where you're just I mean, the people that don't stop and just be like, I'm done, like they're amazing because it's exhausting. it's just like, why do we live in a world where we have a system that is so hard?

speaker-1: Yeah, I don't know.

speaker-0: For just basic care for our kids? Why doesn't anyone else see how important that this is? Yeah. And it's exhausting. So, how much do you think of our exhaustion comes from our actual kids' needs, like on the regular basis, you know, especially those of us with some kiddos with pretty high needs? How much of our exhaustion comes from their needs? And how much comes from fighting systems for what they need? I mean, that's a loaded question. That is.

speaker-1: ⁓ man. And you know, I'm sure every state is different because I know I have friends that have kids that are very, very similar to Lucy and they get so much more help just with with insurance and things like that. I don't know. Every state is different, but but then everyone's situation's, you know, different. And some people some people might say, Well, I actually get a lot of help and my kid is is it's just it's so hard, you know. Yeah. I know for me it's more of the the system and all that stuff for me than than the you know, Lucy and Lincoln, they're they're they've got as they've gotten older, it's gone a lot. Now I would say younger, it was a lot harder whenever they were younger, but now they're a little older, it's gotten a lot easier for us.

speaker-0: they deal with yeah. Yeah. Sally, that there, I mean, there's definitely those, vice versa. ⁓ Dawson's on a waiver program. So most of his needs, and just you know, the insurance type stuff is met. So there's still some stuff we have to fight for. We keep getting denied supplemental oxygen, we keep denied a pulse ox, we keep getting denied stuff like that, which makes absolutely no sense when we have like hospital documentation of oxygen D sats, you know, with seizures. ⁓ so stuff like that. But for the most part, so I would probably say I'm one of the ones who just basically his needs is what can get more overwhelming. But then there's parents and families that have a double whammy. They have to deal with both. They have to deal with fighting because there's not enough programs and systems in place to help them. But then and then they have their their child care on top of it.

speaker-1: Yeah.

speaker-0: So the next area is financial, physical, and professional cost. First comment is financial stress. I never expected to spend $1,000 a month on gas to take my kids to OT speech, ABA, feeding therapy, social appointments, doctors' appointments, plus the cost of sensory tools, particular foods they'll eat due to sensory issues, et cetera. And not being able to work because I have to take them to and from therapy five days a week.

speaker-1: ⁓ this next comment says, for the past couple weeks, I've had a sprained thumb, which happened initially while getting her into her car seat while she protested. Now every time she needs to be moved, picked up, put in, or taken out of the car seat, I have burning searing pain, and it has really hit my mental health to be bracing for and enduring this pain every time she isn't 100% cooperative. And it hasn't been able to heal. There was no one else to take over her physical care completely, and I'm getting older while she is getting stronger. I try to strategize and head off meltdowns by making sure she isn't hungry, thirsty, overtired, overwhelmed, etc. But that constantly running analysis eats up a lot of my cognitive capabilities. I work in an academic adjacent field that involves research, writing, lecturing, etc. And I feel like this survival strain has drained me of my intellect and previous abilities. This has hit my professional confidence and self esteem. Another aspect is the fact that I do not have the time or ability to work on my house, inside or out, as she requires supervision and I work full time while she is at school. Managing to mow the lawn takes special arrangements for childcare. The house needs to be painted. Invasive vines have taken over the landscaping and I feel the neighbors have begun to resent us. Instead of the cute old cottage, we are now the haunted house. It is all a lot and has taken a toll on my mental health.

speaker-0: Totally related with that person on that one because I will say that our house is probably the hot mess house of the street. Because we have a lot of trees where we live and pine pine needles and all these things, and it's like a constant upkeep thing. And we don't have time to just go outside and rake up all the pine needles that exist because you know we live in a forest and we live in HOA and we get we get HOA things telling us to rake the pine needles. And I'm like, those have literally been there for a week. Calm down. It's just it's frustrating. But I'm like, but everyone around here also pays for yard people. I don't have money to pay for yard people. We have to do it ourselves. Well, if one of us is home with Dawson without anyone else, we can't go out and work on the yard. And that's the last place he needs to be sitting with all the bugs and heat and humidity. And back to all these comments. Yes, we can quantify. financial issues based on like just medical bills. But there's so much more than that that I don't think people stop and think about. You know, the lost work, the reduced wages, the household maintenance. There's just there's so much more. The constant back and forth with gas for therapies and all these other things that people just don't stop and take into account when we talk about how much it hurts us as a whole financially. It's a lot.

speaker-1: Yeah. It's yeah. It's not just because really like for us, ⁓ our therapy was starting to get pretty high, but we took care of that. But like our trips to Children's Colorado and stuff, we like we hardly ever owed the hospital money because of the ⁓ copay program that we're in. So I mean it might be a little bit here and there, but it's never just crushing. Yeah. And

speaker-0: Yeah.

speaker-1: Thankful ⁓ thankfully we have a foundation here that's just for our area, ⁓ just a couple of counties that they help support people traveling for ⁓ doctors and anything. And they're we actually had a big fundraiser for for it last night. ⁓ the Dax Foundation. And it's I mean, it's just amazing for our little area because we could not live where we live in the boonies if we didn't have that.

speaker-0: That's awesome. Yeah.

speaker-1: Because everything's too far away.

speaker-0: Yeah. Well, in Sally, there's not enough in more programs like that for families that do live far. Like I met a lady at Texas Children's Hospital, downtown Houston. ⁓ and this was the closest place for her very medically complex kid. And I can't remember the exact town that she lived, 'cause it was one I'd never heard of. And I looked it up after we were done talking. This was two and a half hours away from Houston. Yeah. And this is where she comes all the time for their doctor's appointments. And I cannot even fathom, you know, just the cost of that all the time, over and over and over. Yeah. Everything that you have to do. I mean, I feel like it's a lot for me just to drive the hour downtown to text children's and then they have to pay for the gas, but then also have to pay for the parking and for this and for you know, it just when it's multiple times a week, it adds up.

speaker-1: Do you have tolls on that one or no?

speaker-0: ⁓ nope, but I mean basically every land you can see anywhere around Houston, land, road, anything.

speaker-1: What are you talking about? This land is your land.

speaker-0: Any road you can see in Houston is a freaking toll. And it's ridiculous. Or you have to spend an extra thirty minutes out of the way to go where you need to go to bypass the toll.

speaker-1: ⁓ yeah. It's ridiculous. Ours is, you know, our drive is six hours and I mean we only have to do that every four months, but it still is it's a lot with gas and you gotta stay in a hotel room because you have multiple appointments and food and it's it adds up.

speaker-0: There's been a lot of people I know that have quit jobs because they basically had to, because they missed so much. They couldn't keep a job anyway because of all the the high stress needs of their kids. I mean, I've there's been years at work for me that I'm like, they're gonna they're gonna fire me because I'm missing so much work having to take him to the doctor because there's some years that he's sick more than others. Yeah. And then okay, they're understanding, they're obviously understanding. When you have bosses that are understanding, that's nice. But then When you work in education, after you use up all your vacation and sick days, you just get docked. Two days, that's it. That's all I got paid for. Yeah. It and then I mean, obviously bills aren't getting paid for two days of work. No. So it's yeah, it is a never ending cycle, regardless of how you look at it when it comes to financial strain.

speaker-1: And you just take off your mic No.

speaker-0: So the next one is the future and anticipatory grief. And this first comment actually says anticipatory grief. I know the extreme likelihood that I will bury my child. I live in a constant state of wanting to enjoy every moment and also fearing what comes next. Every morning I open the door to her room wondering if this is the day I find her gone.

speaker-1: My gosh.

speaker-0: You okay? Ooh, that's a hard one. Yep. ⁓ man.

speaker-1: The anxiety related to what the future looks like for my child, and the guilt for sometimes being sad that I'll never truly be an empty nester like other people.

speaker-0: And then the last one says, I am a widow and we have no family. What happens to him when I'm gone? I know I can set up all the financial stuff, but who's going to read to him every night? Who's going to know how to fix his favorite food? And how can I make sure he's safe? ⁓ This is definitely a fear. Most parents that I have spoken to that we have. ⁓ that it's hard to just have basic reassurance for. Because I mean, how are you reassured that? someone's gonna that your kid's gonna be okay when there's no one to take care of them if something happens to you. Yeah. I mean that is that is grief that is truly unfathomable to people who do not live the life and can't relate. Do you think it's hard for parents to stay present with their child while carrying fear about the future that they can't control? Like how do we find the the line in that?

speaker-1: sure they're still present in their, you know, their kids' lives and everything. It's just still that constant back of your mind worry. Or whenever you should be sleeping and you should be resting. That's what you're

speaker-0: Yeah. Lay in bed and stare at the ceiling.

speaker-1: Yeah, I don't know how many times something will pop into my mind just randomly out of the blue. I'm just like, why am I thinking and worrying about this right now? Like that is not something that I should be even trying to think about right now.

speaker-0: I mean, I've had those intrusive thoughts, ⁓ like that one parent said about being afraid to open the door and this, you know, being the moment that, you know, she finds her kid gone. Like I've had those moments with Dawson being sick or with the n, you know, crazy amount of seizures he'll be having. Like, cause I have a martyr on the side of the bed that I keep on all night long. There's nights I sleep with glasses and I have like glass prints all over my face the next day because I just want to be able to keep an eye on them. But there's been many nights that I'm like, what if I turn on the monitor and or not turn it on, but you know what I mean? Yeah. Go over and look at it and it's been on. And you know, that's it, because that has happened to so many families in the past that it is a it's a real reality. And it's hard not to have those moments of fear that that makes you think that. So all of these parents did not describe one

speaker-1: Yeah. Yeah.

speaker-0: Just isolated bad day, obviously. It wasn't just, you know, a bad day where they just seen to vent and getting something off their chest. You know, they described ongoing things that affect sleep, safety, relationships, work, health, hope, just, you know, everything that we feel on a regular basis. ⁓ but I also think it's important to maybe try to see if we can come up with some sort of realistic way to find even the smallest thing to help with our mental health at the end of the day. Because you know, this is this is not something that's going away. This is this is forever, right? I think it's important and I know it's not always super easy, but even if you can find like just one safe person, just one person you know you can be honest with, you can say things out loud to to tell them that you're not okay or just to have check in on you during the week. I think, you know, and that seems like such a minute thing, but I think knowing someone out there cares and is okay with is willing to check on you. Would make a big difference.

speaker-1: Yeah. That is that that would definitely be a help for sure. And I think I do think us women probably can be more vulnerable in asking somebody to be like, hey, you know, I need check on me than it is for like men to just kinda put themselves out there and be more vulnerable. Because they They're men. They got this. They're mentally men. They don't they don't they don't need anyone. It's just like, well

speaker-0: You don't mean. Yeah. Manly men.

speaker-1: No, you do. You really do. You need some accountability and you need friends and you need people checking in on you and making sure you're okay.

speaker-0: Well, and I think even just being able to say the things out loud. ⁓ one of one of these comments was sent to us via Messenger and I had responded back and she responded back again. It was it was a mom. And she s she even said in the in the little chain that we were talking about that it just made a difference being able to get it off her chest and say it out loud. Yeah. And to someone who, you know, isn't isn't gonna have judgment with everything that they're saying. And that does make such a big difference when we keep things bottled. in all day long and we're just in our mind and we start to spiral and then you know you're able to just get all those when your brain just gets into that pit of cycling, it's just it makes such a big difference if you're able to say it out loud. And it's so funny because it made me think about a conversation I had with a friend on the phone. When was this? It was like right after school and I had to pick Darby up and I had to I had like thirty, forty five minutes for Dawson's Bus got home because of just when his time has changed and everything. And she's trying to get a homecoming drug. Anyway, I had like all these things. We didn't have a nurse for the day. Zach was gonna be home late. And she called me because she needed to talk about something else. And I just told her everything I had to do in the next 45 minutes and why everything was so crazy. And I was like, I'm sorry. I and and this isn't a special needs parent either. And I was like, I'm sorry. I know you did not want to know all that. And she was like, ⁓ it's fine. And she's like Doesn't it feel better sometimes just getting that off our chest? And I'm like, this is exact I mean, it's it's the same premise. We need to just be able to have at least one person to say these things to. And I think it'll just make a big difference. And I know it's it's a buzzword, and I know there's a lot of people that have thoughts about therapy, but at the end of the day, I'm a big fan of therapy. We grew up in the eighties and nineties and nobody did therapy then. It was like

speaker-1: Faux paw, you don't need therapy. I mean it you it had to be like really bad for you to toughen up.

speaker-0: kind of situ no therapist I do not feel that way about therapy at all and you know in the in the world of special needs parenting one good thing I will say is there is so much therapy that we can do via Zoom, via virtual appointments that I think it's so amazing that that is available for those of us who can't leave our house, who can't, you know, leave our kids and have to stay close to them and keep them, you know, within arm's reach. But guess what? You can sit next to them on the couch. I still do therapy. Yep. And there are therapists that are trained in caregiving burnout and special needs fam families and and that dynamic. And I think it's just I think the hardest thing is admitting that you need help and then taking that step into finding the resource and actually doing it. Yeah. Yeah. And it and if this this is a blase way of saying it, but if you're embarrassed about it, you're doing it from the privacy of your home and no one needs to know. So that you know, you don't have to worry about getting seen. Out in public, going to therapy.

speaker-1: It's it's okay to not be okay. Yeah. But you just don't wanna stay there. You don't wanna stay and you're not okay. You g we we gotta we gotta you gotta do something. You gotta do something about

speaker-0: Put that put that on a tattoo. Do not say that Do not stay in the not okay.

speaker-1: Byron says that all the time. That's it's okay to not be okay. It is because there's just so many times that we're just not okay.

speaker-0: Well, an another area of just trying to fight for resources and things all the time. ⁓ if you haven't already, like every hospital complex, you know, every team has a social worker and you're able to be connected with, you know, family liaisons, health plan coordinators, we you know, people that deal with the respite and the waiver program. So if you haven't already done that and you're tired of fighting for help, find one of these people who can go to bat and do it for you. 'Cause that's another way of being able to take a big load off. Yeah.

speaker-1: Yeah, for sure.

speaker-0: And I also think it's this is something I'm bad at. So I'm preaching to y'all, even though I need to preach to myself, is when someone actually asks if there's something that they can do, tell them I'm bad about it. I think with all of I think a lot of us it's a pride thing. We don't want to say we need help or we don't or we don't want to feel like we're being a bother. Yeah. ⁓ but I feel like if someone's honestly asking or willing to do something.

speaker-1: Yeah.

speaker-0: Then that means that they truly mean it. Like even if someone just wants to, you know, bring your family dinner one night, just let ⁓ do it. And I know that's easier said than done. And now you start taking my own advice. Yes, you do. But it's funny

speaker-1: Like, no, I'm good, I'm fine, I'm good.

speaker-0: Yes, but like I feel like we're just like so coded in that just being our honest like immediate response. It is. It's again that trauma. So I think just you know, moving forward, even just the smallest possible next step could feel like another project. But just do one small thing, even if it seems, you know, incon inconsequential, if it's something that you

speaker-1: Yeah.

speaker-0: would take the smallest load off for your mental health. I think it's definitely worth doing. Yes. So after hearing from all these parents that I wish I could just hug and just want to talk to them more about, you know, their struggles and just tell them that they're not alone in these things. ⁓ is there a truth that you want to give another caregiver to hold on for this coming week after they listen to this episode?

speaker-1: Well, and I told you this is ⁓ Byron actually like quoted this quote 'cause I think it's just such a great quote, in in his sermon this morning. It's John Piper. He says, Occasionally weep deeply over the life you hope would be. Grieve the losses, then wash your face, trust God and embrace the life you have. So that goes back to it's okay to not be okay. It's okay to grieve and especially what you had expected for your life to be.

speaker-0: Yeah.

speaker-1: ⁓ and th and those hard days when they're just hard. Get up, wash your face, put all your faith and trust in God.

speaker-0: Mine would be basically, and I know that it's something we say a lot, but I mean it when I say, like, I think it's important for us to also know we're not alone. Like we're not alone and feeling the stress, the anxiety, the hard days, the fear, the doubt, all of those. There's so many of us that feel that. And I think it's so important to just find people to connect with that, even if it's on social media that you can talk to, that just truly gets it. So you know that you're not having all of these fears and doubts. You're like, you know, you're just out in no man's land alone filling these things, because that is not the case.

speaker-1: Yeah. But people do, they just feel so isolated.

speaker-0: Yeah. Well, I just want to say thank y'all so much for the people who commented and trusted us with their words. ⁓ and those of you that didn't comment but you're listening, and if you recognize yourself in these comments, I hope that that lets you know that you're not alone. There's other people that are going through the same things that you are. But that also does not mean that you are weak feeling these things, doesn't make mean you're ungrateful or that you're failing as a parent. It makes us human and it makes, you know, our life is hard. It is a lot harder than. a lot of other people's and it is okay to not be okay.

speaker-1: If you heard your life in someone else's words today, we hope you also heard this. You deserve support before you reach a

speaker-0: Breaking point. We'll see you next time.