Guilt with Amanda Griffith Atkins

Rhandyl:

Hey y'all, , it seems like it's been a while since,  we caught up but I think it's , just  there's still been a lot going on. Yeah, it feels like a long time. I know,  you and I both have had lots of things going on since,  the last episode  so,  A spring break happened, did you guys do anything fun for spring break?  

Deonna:

Yeah, we went to Vegas, which we don't live close to Vegas. 

Rhandyl

So Las Vegas, Nevada?

Deonna:

Las Vegas, so yeah, I know  it was supposed to be  a mystery trip and so we weren't telling them we were going there. And when we got in the car, I started playing them that song, like the Elvis Viva Las Vegas. But it played like it never would say Vegas or anything until a minute into the song or something. And so they're both just like, I don't know where was the song supposed to tell. 

Rhandyl:

They didn't know? Allie and Cole didn’t know?

Deonna:

They didn't know. And so it's just like playing the song and they're like, I don't get it. Like, where are we going? What's going on? And I was like, hold on a second. Hold on. I should have planned that out better. Cause I was trying to be all cute and play the song, but yeah, they had a lot of fun. We did all kinds of stuff, we went and saw the Grand Canyon on the way there, we saw a bunch of shows, we saw the Cirque du Soleil Mystère show, we saw Blue Man Group. We went inside that new thing, that sphere, we went inside of there and saw a show, and we just took them and did all the fun Vegas-y things.

Rhandyl:

Yeah, that sounds  fun. 

Deonna:

I basically made videos on my Instagram. I'm still making them. I've been kind of lazy, but if you want to know more about the details of what we did, I'm saying what we did and then at the bottom of the caption, I'm going to have the accessibility information, just what my opinions on whether it was a good idea to take a disabled kid in there or not based off of different issues you might have with things. But we went to Disney Immersive while we were there.

I mean, we did all these really cool, fun things. We ate so much food, but it, it's, yeah, it was fun. It's definitely a very, very, very wheelchair friendly town. I will say that, but it's also a very loud town. And so, you know, but I'm kind of talking about that. Oh, yeah. If your child has issues with sound and they won't wear headphones, that's not going to be your place because it's just, it's loud.

So, but yeah, I'm sharing about that over there so that you can see, like, if you're like, maybe I should go there, my kids in a wheelchair or whatever. 

Rhandyl:

I can't wait to see your do's and don’ts in your recommendations. 

Deonna

Yeah. So, I mean, we did that. It was a big, it was a big risk taking her that far away from Texas 

Rhandyl:

Yeah, did you guys take a nurse with you or?

Deonna:

No, We don't really do that, but It would have been helpful, but to buy a room for a nurse on the Vegas Strip and stuff would be crazy. Yeah. So, yeah, I mean, crazy expensive, but yeah, we've only done that once. 

So now my son's obsessed with poker. We didn't play poker, gamble or anything, but he got this little poker kit while we were there.

Rhandyl:

So you mean they didn't let Cole play? They didn't let him play?

Deonna:

I know. He kept being like, will you go play the table games? I'm like, no, I don't know what I'm doing. I wouldn't lose. I wouldn't even be able to play.

Rhandyl: 

Yeah, definitely. Poker's not where you start. That's for sure. No, it's not. Maybe like go put black on roulette and 

Deonna:

yeah, but now we're  playing a lot and I'm actually getting pretty good at it and it's funny because the other day we bet on who. Was going to do the dishes and it was a bad, messy kitchen. I had baked one of my cakes, it was a disaster and the two losers had to clean the kitchen and I beat both of them. Nice. Yeah, I know. And then I ended up helping them anyways, cause I was sort of afraid they wouldn't do it if I didn't get in there and help them. It was kind of my fault it was messy, but, Yeah, So where did y’all go over spring break?

Rhandyl:

We went to mine and my husband's hometown, Shamrock, Texas. They have a big St. Patrick's celebration every year. 

Deonna:

They have to, right? Yes. When you have that name. 

Rhandyl:

Exactly. Yeah.  I think it's ever, it's only been canceled like two times in all of history.

Deonna:

What all do they do? Like a carnival and stuff. 

Rhandyl:

So there's a carnival, there's a parade, there's multiple concerts, lots of food vendors. Oh, it's this year was, yeah, this year was the first time they actually had a professional wrestling.  What? Yeah, it was so funny. And then That is so random. Like pageants and craft shows and 

Deonna:

What are you called? Like Miss Shamrock or what? 

Rhandyl:

So Miss Irish Rose is the pageant winner for like the high, the high school. And then they have the Lad ‘N Lassie is what they call the little kids pageant. Oh my gosh. Yeah, it's so cute. 

Deonna: 

Oh, that's cute. But thousands of people come from all over to..?

Rhandyl:

Yeah, so some years. It’s a big deal it is for for that tiny of a town. So the population is like 1, 500 people, and yeah, big years when the weather's just right and there's a really good  performer at some of the dances and yeah, then we'll have up to 30, 000 plus people come to town.It's crazy.

Deonna:

I heard them talking about it on the today show one time and I was like, oh my gosh, that is like a little town. 

Rhandyl:

Yeah. It's the official St. Patrick's celebration of Texas. So, okay. Well, you know, there's only a  few things we can hang our hat on there in Shamrock and that's one of them. Oh my gosh, but that's funny. No. I love it. So it was fun, but so Remi and Barrett, both of my kids, were obsessed with the carnival this year. That's good though. Yes. So Remi rode some pretty gnarly rides, honestly, some that I couldn't get on. I know. So she loves to spin. So she loves like that vestibular input. And so one of her favorite things to do is spin like before her therapy sessions, she'll get to spin on this little spinning wheel. And anyway, she loves all that stuff. And so last year she rode some carnival rides and really enjoyed it. It was the first time we kind of just tried it and we just..

Deonna:

Oh, you never know until you try.

Rhandyl:

Yeah, for us. She just had her speaking valve on and we just put her on the ride and someone gets on with her, and we have the ambu bag with us. But yeah, she rode with my parents on the tilt a whirl and it's in pretty intense. I remember that ride. She was smiling the entire time. It was, It was awesome. And then she would not get off of the carousel. She would not let go of that pole. And so we were all just rotating out. I think she rode it five or six times in a row.  Everybody just had to keep rotating out and paying more tickets.That's pretty cute.

Because, and I rode it once. I was like, I can't get back on because I get real motion sickness. And so, oh man. But she, we had plenty of people there, thankfully that could just keep riding with her. She was just having a blast. It was fun. That's awesome though. And then, yeah, it was fun. And then the parade, it's really loud. I'm always worried about it and then she always does fine. 

Deonna:

Will she wear headphones or does she hate them? 

Rhandyl:

No, she will not. She hates them. 

Deonna:

I don't even like wearing these,

Rhandyl:

Yeah, she, she rips them off. She will not even let you. Now, she, I did catch her a few times, she'll put her fingers in her ears. If something's too loud, she'll protect her own ears. But there's just a lots of sirens and stuff, like, especially in the beginning, and then they'll rev all the cars and motorcycles, you know, but she did great with it all. And the best part, she loved being around all the family. We had tons of family and friends in town, it's like a big reunion, basically, once a year. I've said it a lot since we've been back, that I haven't seen her ever be that active and that happy. Yeah. Like both, both happy and active that many consecutive days in a row. That's cool though. Like she partied and she partied hard. And she slept hard.

Yeah. And then it took all of us multiple days to recover from St. Pat's. We actually took two nurses, which it's easier to take nurses to Shamrock. Oh, yeah. We have family they can stay with and we're not out hotels. Yeah. So we were lucky enough to take a day shift and a night shift with us. So my husband and I also got to have a little fun in the evenings and go to the all the events, and so we had a good time catching up with friends and so that was fun.

And one of the days.. so my dad's a farmer and rancher and he was going out to feed the cattle. So Remi and I went with him and she was loving the bumpy, bumpy roads. She thought it was just as fun as a carnival ride. Yeah. And I had turned on some really loud 90s country music on and we were jamming and going out to the farm and she, she was loving it and yeah, it was so funny. And then she could care less about feeding the cows. She was like, I just want to go fast on these bumpy roads. And it's just the way I grew up, so I'm glad that I'm getting to share these experiences with both my kids. But yeah, that's really cool. Yeah. So that was fun. Shamrock was fun this year.  What else have you guys been up to lately? 

Deonna:

Not a lot. I feel like we had all this weird stuff happen to us as soon as we got back, but it's like, at least it didn't happen while we were there, out of town, but our internet went out for two days, which sounds stupid, but when you have kids.. No, that's huge. When you have kids like ours, I don't know, I mean, Cole was upset too. All of our stuff has to have the internet. Oh yeah, everything. 

Rhandyl:

Not only that, the nurses have to chart, you know, it’s a whole thing. You have TVs, everything. 

Deonna:

I mean, yeah, we have no DVDs. There's nothing you can do if, I mean, just, we rely on it so heavily. So, it was kind of crazy. But yeah, we had no internet and our washing machine flooded like two of our rooms and so we got a new washer and dryer today, which I was super excited about. 

So the other day when there was no internet, I sewed Allie this cover for her wheelchair and then this little velcro blanket that sticks onto it because we always are having her blankets fall on the ground and so that actually turned out really good. I was really, I felt very like a homemaker. Cause I'm not a good sewer at all but…

Rhandyl:

That's impressive. I'm going to have to get you some fabric. 

Deonna:

I'll have to make Rhandyl one if it works out. ,But yeah, Allie had a crazy reaction to one of these med changes. We changed up one of our meds and she had the craziest reaction. Last Thursday she was turning red and her face was dripping sweat. And she has this thing called autonomic dysreflexia and it can be pretty dangerous. It's probably our number one thing we have to watch for her, besides the respiratory stuff, and her blood pressure was like 240 over 170, which is super, super bad.

And so we had a moment where we were like, oh my gosh, am I gonna have to go to the ER over this? Mm-Hmm. But we did some things and she chilled out, and we had to change the med back and it was a whole thing. I'm glad that stuff didn't happen while we were gone, like that would have sucked.

But and then we also signed up for Challenger League, which yeah, challenger league is this huge thing. Like I'm sure a lot of you guys do it. But me and Rhandyl's kids are on the same team with some of our other friends that we have and it's going to be a lot of fun. So we're on the same team, and Raising Disabled is sponsoring our team. So that's really fun. We're going to have to share photos of my podcast name on the back of Remi's shirt. 

Rhandyl:

This is Remi's first year to play. Yeah. So the challenger division was, I think it was founded in 1989, but it's, it basically a little league. I don't know how long Lubbock like our local one's been around. 

Deonna:

I, yeah, I don't know either. But it's, it's been around for a while though 'cause some of these teams have been playing together since their kids were little, but yeah, it's so fun. The kids get a home run every single at bat. Yeah. That's awesome. It was just like funny.

Rhandyl:

I mean, the kids, yeah, it's like specifically for kids with disabilities, 

Deonna:

All different kinds, and it's so entertaining because a lot of disabled kids just wear their heart on their sleeve. And so if they miss the ball, they'll just chunk the bat in the air and you're like, Oh my gosh, everybody cover. But it's fun. And it's a really fun sibling experience too. Cole gets to be out there with Allie and we do too, but he runs the bases with her and stuff, and it is so fun. 

Rhandyl:

Yeah, I'm just really excited this year. 

Deonna:

I had so much fun doing it with her last year. So yeah, so that's all I've been up to but it was a lot, and we were so tired. But yeah, I'm glad to be back.. 

Rhandyl:

My husband, he found a projector at a pawn shop. And it's this really nice projector and we set it up in the basement the other night and he had Disney Plus going on and we brought Remi down and we have this big beanbag chair, and her and Barrett sat on it together and they were just jamming out to Remi's favorite movie right now is Elemental.

So it was fun, just like a new theater view. She loves to get right up close to the TV.  So, she was, basically her shadow was covering the movie, because she was just up there looking at the wall. Yeah, we're planning to do movie nights outside this summer. That's our goal for the projector. It's just to put them up on the side of the house and hopefully without mosquitoes. 

Deonna:

I'm not looking forward to the bugs coming back. Like I know we live in a really dry place, but not looking forward to it. But yeah, that's pretty much what we've been up to.  

Rhandyl:

Yeah, I hope you guys enjoy this episode. 

Deonna:

Hey y'all, welcome back to Raising Disabled and today we are so excited. We have Amanda Griffith Atkins on and she is on Instagram @amandagriffithatkins and I am trying to think of how to describe you to people outside of this world. I think you're basically the disability parent whisperer and I don't know if that's a good way of describing you. 

But I started following you after my daughter was paralyzed in 2020. And when something like that happens, you just are seeking anyone who knows how you feel. Anybody. And I kept seeing your stuff pop up over and over. And I'm like, who is this girl? And so I go follow you. And I think what we've talked about you, actually me and Rhandyl's little mom group was talking about you the other night.

And it's basically Amanda can say what we feel, but sometimes can't articulate ourselves. And that's why I think you have such a huge, loyal following of all of us other moms. And we're so thankful that you're on today. We're going to talk about guilt, which is something you wanted to talk about with us.

And me and Rhandyl both have lots of that. Yeah. About. A million different things and we actually posed that as a question to our parent group, which you can be a part of if you reach out to us. And then we also asked it on Instagram and we are not alone. There's so many different reasons. I was actually surprised at how many different ways we can feel guilty. Like I didn't realize there's that many options. But so we're so thankful to have you on. We're so excited. 

Amanda:

I feel like we're trying to arrange this forever and in true disability parent fashion, something always came up or earlier we were sick all the time. Our kids are sick, whatever. So, I'm so thankful to be here and like what a nice intro to feel like the disability parent whisperer. Wow. Yeah. 

Deonna:

Yeah. For real, that's your new title. 

Rhandyl:

For real. Like Deonna said, I can't remember when I first discovered you, someone shared something another parent of a disabled kid, and I'm like, oh my gosh, wow, that really resonated with me. And then, I swear, ever since I started following you, I think I share something on my personal Instagram, on my story, at least once a week. Because I'm like, oh yeah, and I could do it every day because I feel like erverything that I see I'm like, yes, like that's it! I know it but yeah..

Amanda:

My approach is, something will strike me throughout the day that I'm feeling, because yeah  parenting a disabled child. And when I'm writing the post, I'll write it and then I simplify it. That's like my approach. It's just, I think what is the feeling that I'm feeling? What is at the root of what I'm feeling? And that's usually how I get to my post is just boiling it down to the most simple truth for me. And I just feel like so many parents can relate to, our child's, the diagnosis might be different. Our socioeconomic status might be different. Where we live is different. There's so many things that are different between us with different diagnoses. But at the end of the day, those emotional truths seem to be so common no matter what. 

Deonna:

Oh, Yeah. 

Rhandyl:

First of all, Amanda tell us a little bit about yourself your career family and obviously your son Asher's diagnosis.

Amanda:

Yep, I'm, I live in Chicago with my husband and my three sons and my oldest son, Asher, is almost 15 and he has Prader Willi syndrome and I also have a 12 year old son and a seven year old son. We got kids all over the place in terms of age. 

But Asher was born with Prader Willi syndrome, which is a rare genetic syndrome. And just a small piece of his 15th chromosome is missing. And the way that impacts him is, it’s the main thing about PWS that you hear, you'll read on the internet if you Google it, is that people with PWS have what's called an insatiable hunger.

So basically the part of his brain that registers hunger and thirst doesn't work properly. And in theory, constantly hungry and constantly food seeking. So we have a lock on our refrigerator, a lock on our pantry, just lots of safety things in place. And again he could steal food out of the trash. Some people might go so far as to eat dog food. So there's just food is everywhere.

Rhandyl:

I remember, I remember the first time I'd heard about Prater Willi's. I actually worked at a wellness company and worked with dietitians and they saw patients, outpatient, and I remember that was the first time that they had a patient with Prader Willis. And I had never heard of it and that was of course the main thing that I knew about it at that time was the hunger aspect. That's just wild. 

Deonna:

Yeah, that's such a strange symptom. Oh my goodness. It is. And that's hard because you have to control then his school situation and his, I mean it's not just your home. He could eat anywhere. Oh man. Does he have a nurse that goes to school with him?  

Amanda:

There is a nurse at his school but more than anything the teachers are just really aware of, If he asks for seconds. Our instinct when we see a hungry kid is to feed them, right? As parents, as teachers. And especially when we're in the public school system with Chicago and there are legitimately many hungry children that come to school and have to get their meals at school.

So the syndrome itself has a lot of other like, OCD, anxiety, ADHD. He has lots of other, it's a really complex syndrome. And then cognitive impairment and infertility. There's so many other things that go with it as well, but the food and behavior stuff is the biggest things that we manage.

Deonna:

Wow. That is such an interesting symptom. I knew he had that, but yeah, that's, Oh my goodness. So you're a boy mom too.  

Amanda:

Yeah. Total boy mom. And when I’m not parenting, I am a licensed marriage and family therapist and have a practice in Chicago, a group practice in Chicago with about I think there's 23 additional therapists and as well as myself. So we have a big group practice in Chicago that keeps me really busy too. 

Deonna:

Do you counsel kids or do you counsel just adults or everything? 

Amanda:

Mostly adults. I have a couple teenagers on my caseload, but I don't see a lot of clients right now because I do spend a lot of my energy running the practice, but mostly adults. And I also see couples as well, but my clinical interests are in grief as well as disability parenting and anxiety, depression, postpartum. 

Deonna:

Those all go hand in hand. Yeah. Exactly. We got all those problems. Check. Yeah. Oh my goodness. That is so funny. Yeah. Having a middle school boy is a fun experience. I'm going through that and they are so funny. It's comic relief every day for sure. And a lot of the I have a son that age. 

Rhandyl:

I was gonna say that you're not only with your work and Asher, but man, that's a busy age for  boys, kids, yeah.  

Deonna:

Yeah. Yep. Yep. Oh, my son every day is saying stuff and I'm over there with my phone Googling what does this mean? Or what does that mean? I'm like, there's like a whole other language. I'm like, what are you talking about? But it's funny. It's entertaining. 

So every disabled parent loves you, follows you. I don't even think I've introduced you to anyone. I'll tell somebody about you and they're like, yeah, I know, I follow her already, duh. That's where we're at, but so what inspired you to start sharing so publicly? Because sometimes that can be hard and you open up yourself to criticism or hate or, ignorance and all this stuff. What, what motivated you to start doing this?

Amanda:

When Asher was really little, I noticed that nobody was talking about how hard disability parenting was. I felt number one, I didn't know any other disability parents. And number two, it felt like any time I tried to talk about what I was struggling with, people would instantly feel uncomfortable.

And I noticed that people would be like, yeah, but you guys are doing so good. And Asher’s you're so lucky to have you. And I just know everything's going to be fine. And it was like, I knew that their intention was so kind and they were trying to encourage me. But the message that sent me was that it wasn't okay to talk about my struggles.

And so for a while, after I noticed that really early on, I pretty much stopped. Even I like prided myself on being like, people don't know I have a disabled son. And it felt, it was weird, it was not this conscious experience, but I was like, I don't know. I felt like I couldn't talk about it. I felt like people don't want me to talk about it. 

And so I really felt like it was not part of my identity, but then as I got older, I noticed I'm like, no, I, it is a huge part of my identity, number one. Number two, I'm not ashamed of it. And I don't, that doesn't feel true either to be like feeling like I it's not part of my identity because it is a huge part of my identity as it should be.

So, I started my Instagram just being like, you know what, I'm just going to talk about how hard it is. I'm just going to be open about it and see what happens and see if maybe I'm crazy. Maybe nobody will agree with me. Maybe I'll instantly get canceled, and then I would post things. Sometimes I would post things and be like, wow, this is. the most vulnerable thing I've ever said. And yeah, thousands of people would be like, Oh my gosh, we feel the same way! And I was like, whoa, I'm not alone. I'm not a bad mom. We're all struggling with this. And so slowly, it just got me feeling more confident about sharing the hard stuff.

And I realized, whoa, not only is it good to talk about what we're struggling with, but it's actually healing. I actually feel better. I feel like I can be a better mom by talking to people who get it. And we're all healing. Just simply naming and discussing the hard stuff. So it just, everyone is. I get messages from people that are like, you've been so helpful to me. And I'm like, you all have no idea what just be feeling less alone has done for me to feel like I can do this. 

Deonna:

You feel the love back. And I, I agree with that because I was really afraid to tell anybody how hard anything was for the first few months of her injury. I just acted like it was, I didn't act like it was fine. People knew I was very upset and freaked out and scared. But then it was about six, eight months in where I started actually telling people the truth, and what was going to happen, and how things were going to be and a lot of people couldn't handle it. But once I found my tribe, it was good. But yeah, I just,

Rhandyl:

I know in the beginning, yeah, I, in the beginning for me, I was just angry that nobody understood. But like you said, I feel the same way after, especially after Deonna and I started this podcast, which I had wanted to do something similar to this for a long time because I just

really craved people that got it and that understood. And it's hard to find that in your local area. Luckily we have that a small group of us now. But I understand what you're saying. 

Whenever things first started and as we realized things weren't going to be normal, per se. Yeah. That people would ask, how are you, but then whenever I was honest about it, It was like, oh, oops, I really shouldn't have asked or they really just wanted to dismiss my answers.  So I totally I get that and I feel a sense of peace now that I am so open, and then getting feedback from others, like you said, that are out there, that do get it and we are not alone. So  yeah, that's awesome.

So what is the best thing that has come out of raising your son Asher thus far? 

Amanda:

I think for me just having my eyes open it to it. It feels like such an ableist perspective to be able to say this but having my eyes open to the disability world, and be like, in a way that I feel like most able bodied people go on with their lives and don't realize what it's like to be disabled. Right. Because we don't have to. Yeah. Or we've never had to. 

And I think just being able to see life through Asher's experience and also have my eyes opened up to a whole amazingly diverse population of people and just see it through a different lens. And be like, wow, there's so much beauty and resilience and just humanity, normal humanity, just to be able to be an ally and an advocate for disabled people.

Also, just see disability as a part of life. Disability is just a part of life. Asher is my son, this is our normal life and we have good days and bad days. I don't know, just to be able to experience life through a different lens, I'm so grateful for and just very glad that I now understand that whole world exists, and I've been able to do better because of it.

Deonna:

Yeah, I can relate to that a lot. It's so funny to think about pre-us being in this disability world, and I have MS, I should have been like, okay, I might, need this or that someday, or be disabled someday. And I just was like, oh yeah, that's not me, I don't have to worry about that. And I've said before, I didn't care about the disabled community until it just hit me like a semi truck and then I had to, and now I'm like, oh my gosh, I didn't care about the disability community. What is wrong with me? But it's until you understand and live in it it's hard to know. But that's part of why we're doing this is so people can listen and see what they could do to make it easier on us or whatever. But yeah, I totally relate to that. 

Rhandyl:

Yeah. And I feel like it was up until really the last decade, it was like taboo to even talk about it.

Like you said, you didn't know anybody, nobody talked about it. So the awareness and the inclusivity that's coming, I think is is going to be life changing for our upcoming generations for sure. 

Deonna:

Yeah, we spoke to someone who grew up with a disabled sibling in the 90s, and her experience versus what my son is going through, and it's all hard, but it's just so crazy, the difference. This mom was craving that community and it was, she was searching for it and there was no Facebook, there was no Instagram, there was no internet. And so she was very isolated. And it's, I'm glad we are where we are now as far as some of that goes, for sure. Makes it a lot easier. Yes. 

What would you say is the hardest thing about raising a disabled child? 

Amanda:

For our family, I think it’s.. I really struggle with the sibling piece, that's where, that's what would be my answer right now. I think probably at any given time I'd have a different answer for this, but yeah, there's a lot. Now it feels like balancing the needs of my non disabled kids versus the needs of Asher.

My kids are at an age where everyone's so active and going to soccer on the weekends, or wanting sleep away camp. I'm trying so hard, especially as a therapist, trying to meet everybody's needs, make sure that nobody's feeling resentful, nobody's feeling left out, nobody feels like the Asher gets too much attention, making sure Asher doesn't feel like the other kids get too much attention.

I know. And just as a mom, really struggling with how do I make sure everybody feels loved, everybody feels like they're getting what they need. And on top of that, having  normal teen angst, where it's I feel like my kids hate me most of the time, so what's normal, what am I screwing up, what am I, what do I have control over, how do I make it so my kids all feel loved and equal? That feels really hard right now. 

And also acknowledging that there's a lot of stuff that Asher can't go to. Asher will really struggle if I take him to a soccer game where it's so loud and, yeah, the sounds. But I have to be there for the other kids. It's just, it feels really hard to balance family and everybody's needs.  

Rhandyl:

Yeah, and that's basically the topic that we're here to talk with you about is guilt. Yes. Love it. That is one of my biggest struggles right now too. Of course I have a toddler, two and a half my son, Barrett, and then of course Remi's the oldest and she's my disabled child. And so that is always such a struggle because toddlers obviously need a lot of attention. And so does Remi. And then of course my husband needs attention too, but unfortunately he probably gets the least amount if I'm being honest.

But and I think that's mom guilt in general, but I feel like it's heightened when it comes to raising disabled children. I'm pretty sure we all feel this way, but just taking of ourselves.. just whenever I do something for myself, or self care, I just always, I think in the back of my mind I feel guilty about it. Because there's probably something I could be doing for my children and something that I might.. I go get a pedicure or a manicure and I see the moms there with their little typical kids. I'm just sitting there getting mine by myself thinking there's no way Remi would ever do this, she would not let someone sit there and hold her hand. I just feel guilty. And so, do you have any advice for parents that feel that guilt when they're trying to take some time away and take care of themselves?

Amanda:

I think the first step to any feeling is first of all, acknowledging to yourself that you're feeling it, because it sounds like such a simple thing, but these feelings like guilt and anger, grief they're swimming around in there and they make us feel bad. And for the listener, I'm using quotations because “bad,” I feel “bad” or I feel “upset.” It's what does that mean? You feel bad. You feel upset. What does that mean? Yeah. 

So I feel like if we don't label and acknowledge the feeling in our head.. Oh, I'm really having a guilt day or I'm really having a grief day, then you just walk around unaware of what you're feeling and you just know that you feel “bad.” Right? And so labeling it allows us to give us some compassion to the feeling. 

And so when I find myself feeling guilty, I'll think, okay, I'm really struggling with guilt right now. What does that mean? Right. Does it mean I need to take an action? Does it mean I need to do something different? Does it mean I need to just offer myself a little compassion? What do I do with the feeling of guilt? What do I do? For me, it often means I need to like respond to it. So if I'm feeling guilt about maybe all day I'm spending with Asher and I feel guilt that I missed my other son's soccer game because of it. 

What does that mean? How can I then tend to the feeling in a compassionate way? Maybe it means I'm going to make a point to have dinner with my other son, or I'm going to make a point to go in his room and talk to him at night. What does it mean? Maybe it just, maybe there's no action I need to take, and it just means I need to practice self talk and be compassionate and say “hey, you're one human. You can't do it all. You're doing good enough. And you gotta be kinder to yourself.” 

It's a hard one though, because I think that guilt can really wreck us. It can really weigh on us, and we just casually fell into the conversation of guilt without even trying, as we started this conversation. We feel it all the time, so it's really hard to respond to.

Deonna:

And it's funny, like last night, Allie was upset and her nurse is doing all her stuff and everything, and I'm like, okay, I'm gonna go take a shower, I'll be back in a minute, I'm gonna go take a shower. She got upset, like I was going on a two week Cancun vacation, and I'm like, Allie, I can't be stinky mom, I have to go shower. And my daughter talks and stuff, so she can really lay it on thick, the guilt. Like she contributes. Definitely. She loves to make me feel bad when I leave her.

But it is, it's like a daily thing, like self, I don't even consider a shower to be self care, like that's basic hygiene right here, but, she even, I love my shower. That was like 20 minutes. I can just, I take really long showers. Because I'm like, no one can bother me, but it's so funny how we feel guilty as parents for going and taking a shower. It's so silly, but it happens to us. 

Amanda:

I do like what you said though, about how you're communicating to Allie. You're being like, no, mom gets to take a shower. We set the precedence, right? If we're constantly available to our kid 24/7, and we neglect self care, then that sends the message to our kids that's how things are, but if you say, no, mom takes her shower and I'll be back, you’re going to be okay.  It's going to be a while, but. Yeah. It can be 20, 30, 40 minutes, whatever. But you're consistently setting the lead that like, that's how mom takes care of herself. That's something that mom does. Yeah. It's going to be okay. Yeah. 

Deonna:

Yeah, it’s good for them to see us taking care of ourselves and doing something that makes us happy, because then that's a good example just when they grow up someday, either your typical kid, it gives your typical kid permission to do that too. I feel like, because like my son's got to have something outside of this life. It’s just crazy, so it gives them that permission too.

But yeah, we asked a bunch of these questions to get ready for this, and a lot of the parents felt guilty about their kid being born with a disability that they have no control over, or even me, I don't know how many parents have had an injury related situation like us. It's not as many, but I feel guilty that my daughter fell off the couch and I didn't know she had this brain problem that how could we have even known about?

But I don't feel guilty about it anymore. I've really worked through that and been like, I didn't know anything at that point. I didn't know what I know now. I can't blame myself for knowledge that I've acquired in the last three years. But. We all feel guilty. I have people who constantly are coming up to me and being like, we don't let our kids jump on the couches because of what happened with Allie and it makes me be like, okay? I don't know why you're telling me this, first of all, but when you tell me this, it's basically your way of saying, I was letting my kid jump off of a 20 story building. That's not what I did. She was just being a regular kid, playing, jumping off a couch. Every kid jumps off the couches.

Yeah, hers was a special situation. The couch actually had nothing to do with it, but you know, how do you tell parents to deal with these guilt feelings over the fact that their kid even has a disability in the first place? How do you have them deal with that?  

Amanda:

I think in a roundabout way, I feel like the guilt on this one is almost like a wish for control. It's if I am mad at myself that my kid has this problem, it means that I had control over it. You know what I mean? So it's almost like our weird search for control, I feel like, because in all of these cases, there is nothing we could have done to make our child be any different. There's literally nothing we could have done besides, like in my case, maybe some genetic testing or something. And then if I would have made the decision to terminate, which I wouldn't have done anyway. So yeah there's literally nothing I could have done to stop.

I know. Yeah. I think that idea of being like, oh, it's my fault is some weird way almost of trying to have control over it. And so we just have to remember like. there's nothing we could have done and I would say to go back to the idea of self compassion. If you find yourself getting stuck in these thoughts ask yourself, what would I say to a friend that was coming? That they feel guilty that their child was born this way. 

And, most of us would say, oh, it's not your fault. You didn't do anything wrong. You didn't do anything to cause this. It's just the way it is. And can you extend that compassion that you would give to your friend. Can you try to extend that self compassion to yourself? I know it's not that easy, right? Like in theory, I know it's not that easy but it is almost like this mental battle. You just find yourself spiraling and blaming yourself. You have to try so hard to think a different way. I know it's not that easy, but. 

Rhandyl:

Right, it took me quite a few years because I was mad at myself that I didn't advocate during my pregnancy. Because in our situation there was no diagnosis in utero. She was just premature and then all this other stuff came about. And so I put myself through all sorts of testing. What did I do? What did I do to my pregnancy? What is wrong with me that made my child like this? All the genetic testing. So we still don't have answers for why Remi is Remi, but I still catch myself thinking it was something that happened in utero.

And it may well have been, but there's nothing I can do about it now. Yeah. And it is what it is. But I definitely. I still struggle with that guilt, but in the beginning I was, I really blamed myself for years. And had totally just had for years said, Remi would be an only child.

And then after finally, like you said, giving myself self compassion and we jumped the gun and had our son, and he's yeah he's definitely a joy to have and but that pregnancy was extremely hard. My second pregnancy. Because I had so much anxiety and my postpartum after he was born was so rough. I think that was, might have been harder, honestly. The guilt ramped up a lot after my son was born, because I was seeing all these things that me as a mom of a typical child, and what my typical child was able to do in their first year of life and know that and just seeing it in like real life and experiencing it.

And knowing that my daughter, Remi, was hospitalized for the first 15 months of her life, and that part of development is so crucial. And then I would go back to, man I feel guilty because I was able to go full term, you just go back and forth with all these things, but yeah giving yourself self compassion, I think, is a great answer, because I have to remind myself at least daily to do that. If you don't, you'll go crazy.  

Amanda:

I do think that's huge though that the way that a subsequent pregnancy, especially if it's, a non disabled child, you are experiencing a whole new situation and you're like, wow, I didn't get to experience any of this with my first child. I didn't even know that this world existed and that just brings so much guilt and grief.

And I agree with you, Rhandyl, that after I had my second pregnancy, that was probably my lowest point.  I had terrible postpartum anxiety. I've really struggled with a lot of guilt because it felt so easy with number two, I was so happy with number two, so that was very unexpected that was going to happen.

Deonna:

And the world would probably be confused by that, like the sadness because they're thinking, Oh, she had this other kid that's easy and she should be happy, but it could be really hard. Yeah. Oh man. So we actually had a lot of parents also talking about how they had guilt about this idea of there not being enough hours in the day. They feel guilty that they're not doing everything they can because, a lot of our therapists or PT, OT, things like that..they’ll be like, okay when we're not here, work on this or do that or get her in the stander, there's this list that's so long that everybody wants you to do these things. Like stretch her, do this, do that and there's just not enough hours in the day. And you also have a life outside of that caretaker role. You have other kids you have. Have you ever felt that just feeling like there's more you should be doing for Asher, but then you also have other things going on?

Amanda:

Definitely. I feel like probably most listeners that, especially if our kids are in any type of therapy or, any type of medical, equipment or assistive devices they're supposed to be using, all of that. Yes. I have just honestly, maybe I've swung too far the other way, but sometimes I'm just like, does anything matter? I know it does matter. You know what I mean? Is this really going to make a difference? If I force him to work on speech sounds or if I make him repeat this thing 200 times, is it really going to make a difference in the long run? And at what cost? If we're sitting here fighting and I feel like he's miserable and none of us are enjoying this. To what extent should I really try and put time and effort into this? And so I would just tell parents do your best. But also we know those of us with children with severe disabilities or very limiting disabilities that make it so that there's just certain things that they're not able to do, therapy definitely helps, but Allie's probably never going to be unparalyzed no matter what you do.

Deonna:

It's like funny because when we first started, she was having all these improvements because she couldn't even move her head at all. And we were like, oh, this is our reality forever. Oh crap. What are we going to do? And then, she was doing crazy therapy for the first year and she was making all these improvements and now she'll plateau out, then she might be able to do a little bit better on something and then she'll plateau out for six months. But parents know what their kid at the point where we all are maybe not at the beginning, and you do have to push them at the beginning just to see, hey, where are we going to be? Like what's going to happen? But I definitely know what Allie is probably capable of at this point. And We cut her therapies back a little bit just because it was like an every single day thing and it was too muc. But I think every parent knows what's right for them for sure when it comes to therapies. 

We have a lot of things where we could be putting our hand splints on more, we could be doing this, we could be doing that, and every day we're like, oh crud, we forgot to do our AFOs at all today, oh and some of those do have negative ramifications, sometimes, but yeah, there's only so many waking hours in the day, we're all so tired. Most people have jobs. It's crazy. There's no way you're going to do everything they want you to do. 

Rhandyl:

Yeah, and I can empathize on both sides because I, my career, I do pediatric physical therapy. So I am a therapist giving parents these home exercise programs. Yeah, but 

Deonna and Amanda:

it's your fault. It's your fault.

Rhandyl:

It's yeah, but I am also well aware that the majority of the time the home exercise programs are definitely not going to be done as frequently as we say they should be. But I can say from a parent aspect on this because I was a physical therapist assistant before I had Remi but I was a non pediatric, very adult ortho. And then with Remi's hospitalization, the first 15 months of her life I've viewed myself as a parent, my parenting, at that point, as a job. 

And so I would go into the hospital every day and I would make sure every day if she was well enough, she would get down on the floor with all of her machines, and the nurses, I know, it was so annoying because yeah, they move all the things down and I was like we're gonna get on the floor, we're gonna do tummy time, we’re gonna do this, we’re gonna do that. And that even led into when she was finally discharged and we were home, I viewed her medical care and her physical progression that, that was my job. 

And for a few years that took away, I think looking back I, I think I was viewing my role as a mom, not the best way because whenever it finally clicked and I was able to step back and really just be mom and be her advocate and be her mom. And not push her so much all the time. It was probably definitely really for her. But it was such a relief off of my shoulders because I think that I just had this is, we're going to grind and grind and you're just going to get better and she still has, she's seven years old and she's still, we still all of a sudden we'll have a milestone happen.So we don't chalk all therapies, but we definitely don't do therapies as often as we used to. But that guilt aspect is hard because you're like, what could she actually be doing? It's just, it's one of those things.  

Amanda:

But that's a great point when you said we have to first and foremost be mom, which means snuggling and reading, like we have to have time with our children.That's not working hours, where we're trying to. Like we have to be normal parents too, sit around and play and laugh and be silly and all those normal mom things because if we're not doing it, our kids not getting it, so it's beneficial to us because we want those mothering experiences and it's beneficial to them because they need us to be their mom first and foremost.  

Deonna:

And I know it's hard for us in particular, there's nights where I lay in bed and I think about my interactions that I had with her and it felt like we were interacting a lot, as a mom daughter situation, but we weren't, we were, it was the medical, like me in there working on her and doing all these things. And then I look back and I'm like, Oh my gosh, I didn't even do mom stuff today. I was too busy doing caretaker nurse type things, and so it is a conscious decision every day. I have to do these things to be her mom. And it's, it is hard. It's really hard to remember that you're her mom, which is sound stupid, but other parents would get it. 

Do you have advice for how to help parents facilitate all these medical procedures or routines that cause pain without feeling guilty about it? I know Allie's paralyzed, so there's really not a lot of pain below the shoulders, but she does these respiratory routines that just suck.And she is used to them now, but back in the day, she used to cry and scream and would actually have serious emergencies because of how much she hated them. And she didn't understand, she was four at the time, and we just would make her do them. And we do the same stuff to this day.

I think this is something a lot of parents struggle with really bad there. I saw one mom talk about having to hold her kid down and force her kid to do something that they had to do. And I'm just like, Oh man, I haven't had to do a whole lot of that. So that's tough though.

Amanda:

This question is so hard for me to answer because I probably err too much on the side of being like then just don't do it. Or, if it's that hard, then maybe you don't have to do it. But I know that's not always the answer, especially if it's a medical anesthesia, where you have to, if it's yeah, of course medical. 

Rhandyl:

For us, the worst one is every time she's hospitalized, especially as an infant. This happened every single day. We would have to hold her down to draw blood because she would have daily labs drawn. And now we only get labs drawn maybe once a year, but it's still this one phlebotomist and it's mom and, or the nurse, or both holding her arm straight and she's sitting there screaming and crying and we're like, trying to be like, it's okay and she's no it's not, they're poking me with a needle. But cognitively, I don't know if she realizes we're doing it out of care for her. Anyway, that is such a struggle, and I know it's a very, it is hard.. 

Amanda:

But, right, in that instance there's, it's not like that's optional, right? It's like you have to No. She has to, yeah, you can't just be like, I'm not gonna do it. But, I don't know, I think there's small things that you can if you could be like, I want to request that I don't take part in holding her down. You both do it, and I'm gonna stand in front of her. That's a good idea. Yeah. Or I think these are instances where it's okay, afterwards what, how can we repair this? Do you want a little, little things like little treats or can we snuggle extra? Or, anything that you can do to make her feel better after that , and yourself, that's another thing too.

I remember when Asher had to get some blood drawn when he was little and I had to pin him down and afterwards, I was like, we are both taking a self care time, like it's I'm not only, I spoiled him a little bit too, but I'm spoiling myself too, because this, that was terrible. Yeah. Yeah. I need to calm down too. So this is such a hard question, I think, because the reality is that for so many of our kids, they have to go through painful procedures and it's not an optional thing. And as parents, we have to partake in that. I don't know the answer to this. Just so much compassion on yourself, on your kid. If there's any way that you can have more professionals help so that you don't have to partake in it. You're not the bad guy. Yeah. 

Deonna:

And it's hard cause like with my kid. I tell her, we do these things so that you don't die. And we've had to have this conversation. If we don't do X, Y, and Z, you won't be here with us anymore. And she's old enough to be like, oh my gosh. Yeah. I will do whatever it takes I don't care, but I would say a lot of kids, they, you can't have that type of logical conversation with them. They're not going to get it. And so that is so hard, but yeah, I do think that's a good idea to remove yourself as the bad guy, but when you're at home health, like us, that is tricky because it is not a safe majority of the time. And even our nurses get so connected to the kid, it's like an aunt. And they don't even sometimes like doing the painful things because they don't want her to be mad at them either. So yeah, it's funny.

Rhandyl:

Yeah. We touched on this a little bit earlier, but we had a lot of moms that definitely responded to this guilt question that had babies born disabled. That they weren't able to have that natural mom baby bonding time like I did. Do you have any tips for dealing with this? Maybe moms that are in this process right now that are listening, 

Amanda:

One thing that I will say that has been really reassuring to me is there's actually research on this that babies are able to bond. If a baby's in the NICU or something like that, and you feel like you're missing out on that bonding, research has shown that they're still able to bond down the line. So if that's something that you can tell yourself to remind yourself, like we are still going to bond.

That doesn't ease the pain of the experience, but if there's guilt about feeling like I'm not bonded with my baby, you can remind yourself that I will be able to bond with them. It’s not like it's game over for the rest of our lives, we're not able to bond. Rhandyl now that she's obviously out of the hospital, she's a little bit older, but you, I'm sure you feel bonded to her now.

Rhandyl:

Yes. Yes. And I feel like it took, honestly, it took a few years for me to feel like she knew I was mom because, we had so many people in and out people. She was so many people in the hospital, obviously. And then when she was at home, we came home and we had home health nursing.

And so I was always like, does she even realize that she just think I'm one of her medical personnel or does she realize that I'm mom? Now that she's older and things have gone on, she definitely knows I'm mom. She calls me mama. That's one of the very few words she'll say  but yeah, so it's totally my feeling towards that is we are bonded and that it is possible, but It is hard to go through that whenever they're babies and they're going through these long hospitalizations. 

Amanda:

If someone's feeling guilt from that, I wonder if they can look at it and instead of using the word guilt, they can use the word grief. And that feels a little bit less self blamey, to be like, it's not my fault. And I can't take responsibility for it. There's literally nothing you can do. There's nothing you can do for it. 

Rhandyl:

The only thing I did, I feel like I turned myself, my guilt in this, I'm just thinking back, putting myself back into that time when I was like, literally me as her mom, I cannot do anything. All these machines are keeping her alive. So all I did was pump breast milk, and I became this milk cow, and I donated like thousands and thousands of ounces of milk to the people all around the state to hospitals. But I feel like, oh, I was like, I can't do anything, but I can pump and so she had more than enough breast milk. That's all I thought I feel like I turned myself into this machine but yeah, I don't know. It's hard  But yeah, I feel 

Deonna:

Initially you're so helpless at any diagnosis, I feel like, and then over time you start to realize what you're actually bringing to the table. But that even happened with me. It was like this helpless, horrible feeling and you're in the hospital and yeah, like you were saying, there's not a whole lot you can do. You just are having to listen and do what everyone tells you. And then as time goes on you can take a little more ownership of those things, but it takes a while, I think. 

Amanda:

And if you look at it from acknowledging the feeling instead of it being guilt as grief, I think that makes it feel a little bit more approachable because it's a feeling that you're sitting with and then you can have compassion on it. It's not something that you've done wrong. It's just like the tragic-ness in the whole situation and that's out of your control. It's just really grief at the end of the day.  

Deonna:

That's what one of our moms that we've interviewed in the past, her quote really stuck out to me, we were going to read it later, but it said that basically someone said that guilt is this useless emotion unless you did something wrong consciously and you need to say sorry or repent for whatever you did, so I do think you're totally right.

Like a lot of these guilt things that we're talking about, if you put in the word sadness, grief, whatever, it, that makes more sense. Like I'm sad about how Allie got hurt. I'm sad about how it went down and what has now had to transpire for her. But I don't actually think any of that's my fault, but I do feel that bad feeling, and yeah it's really not guilt, it's just the sadness, because I feel a lot of those same negative feelings towards my brother's death. It's not like I feel guilty about that, it's just a sadness really. 

Amanda:

I think in this really messed up way, when we say, I feel guilt about it, it makes us feel like we had control over it. Yeah. We love that. Yeah, like I want to punish myself for this bad thing that happened because it makes me feel like I have control over it. Yeah. But I've really had no control over and what I actually feel about it is actually really sad. 

Deonna:

Yeah. I think a lot of, especially I think it's both for girls and guys, really, because my husband has the same thoughts, but we want to feel like we're running the show and we're just like, there is no, I have no control over hardly anything in my life and that is  really scary, like a  enneagram one- I like to be the boss and for things to be going this way. So it's hard when I don't feel like when things are spiraling. It's not a good feeling for me. Yeah. 

Amanda:

So I'd rather beat myself up and pretend like I have control.  

Rhandyl:

Yeah. Yeah. I feel like in the beginning for me another hard thing was just accepting once we got home with Remi that I literally cannot physically or emotionally, mentally do this alone. It takes a team of six nurses and specialists and doctors, therapists to keep her alive. And so that's another thing that some other moms and parents had said about feeling guilty about that not being able to take care of their child on their own. And I think probably your answer to that is the same way. Have compassion for yourself. Or is there anything else that you would add to people that are feeling guilty that they can't take care of their child by themselves? Can't do it all. 

Amanda:

I have so many thoughts about that. One is that it is this really modern, American philosophy that we should be able to do everything on our own. If you think back a hundred years ago, people did have the whole community involved. You lived in a, we live next to your mom and your sister and all your neighbors, and you all were like sharing child care responsibilities and, and we live in such a like hyper independent culture that's you should be able to do everything on your own.

And I would suggest that on the whole, I would love to see us move away from that. So this expectation that I should be able to take care of my kid and meet every single one of their needs. To me feels like so unrealistic even for a non disabled kid. So yeah there's that one thought and then the other thought on it is if you can change the like we talked about changing guilt to grief what if you can shift the guilt in this situation to gratitude? Right. To be like, actually, I am so thankful that I have this amazing nurse that comes and helps do this thing that quite frankly, I don't even want to do. I don't want, I don't, I'm scared of medical stuff. I don't want to have to do medical things. If I can have someone come and help with it,  so thankful for that person. So it's just a shift of looking at things and then even more so to go on and say, but at the end of the day. I feel grief that I even have to have this situation. I can have compassion on the grief that I'm feeling. And that's just the reality of it.  

Rhandyl:

Yeah, that's definitely the way I feel about it now. I love my village. I cannot do it without you guys. You guys keep me sane out of the funny farm. I have totally accepted that. So yeah. 

Deonna:

I definitely, like I, at the beginning, I remember I didn't want a day nurse, I could do this. And I was, I took so much pride in the independence of it. And I think part of that was me and my husband being a little bit screwed up because this happened during COVID. So we were forced to do this very independently. We couldn't be in the room at the same time. So then when we got home, I was still in that headspace of oh, I can do this.

And then we started getting the night nursing in and I started realizing, oh no, I can't do this. And when I speak to other people who've kids have had an injury or birth, like anything like that. And they say, oh I could never have nurses in my house. I can't, I won't do it. I just, I'm like, Oh yeah. But in my mind I'm like, yeah, you're not going to make it. I don't know how you're going to make it like good luck with that. But you have to have help and it's okay to ask for help. And I hated asking for help more than anyone. I was like, I felt like a failure. It was like, I can't do this.

So I'm not good enough or something. But yeah, now I've realized if you don't have help, like my parents are here right now helping me out. It's just, I feel like I ask for help too much sometimes. Yeah, I'm like, I can't brush my own teeth. I need help. I need to do it. Sorry.  Can someone else brush my teeth? I don't have time..  

Yeah, another thing that a lot of the moms talked about, I would say this was one of the most popular ones, was just, they feel bad because they have a job, and they feel bad that they have a job even if they need to survive. They need money. Having a disabled kid is so expensive, people do not even understand. They think, oh Deonna's kid is on insurance, Medicaid. They don't have to pay for things. That's not reality. It's not how it works.

And we'll do it. We'll spend the money. But in the process, I've gotten a part time job because it helps. It just helps us out. But that's not a lot of moms cases, and I think about single moms, I'm like, oh my gosh, it's so hard. But yeah, what do you tell moms who feel bad about having a job in general? Because I don't know if men are necessarily feeling this way? Maybe they are maybe I don't know? But I know a lot of the moms were saying this..

Amanda:

This one's tough. I think man, it just goes back to you're one person, you cannot do it all. This expectation that we've put on ourselves that we should not only be able to show up 24 seven for our kid, we should be a nurse, we should be independently wealthy, we should be a physical therapist, and OT, SLP… So it's whoa, that is so much pressure on one person. And it is. It is. I'm not going to say that a job is like a quote unquote break, but I know for me when I'm in my office and I'm not thinking about my kids, I'm like, it's really nice to be able to give myself permission to use that part of my brain.

So I would also say remind yourself that you actually deserve to have a job. If your job brings you any sense of fulfillment, you deserve to have that. And you're allowed to have a time where you're not mom, you're not 24/7 caretaker. 

I know not everybody looks at their job as something that they love. For some people, they might hate their job and they go and they're like, I would much rather be with my kid than her, so that's a different situation too. But I just think again, I would go back to that sort of idea of  self compassion that  trying to remind yourself that the expectation shouldn't be that you have to do it all.

If you have to go to work and you do that while your kid's in school or with a caretaker or something if that's what you have to do can you have compassion on yourself and be like, I'm doing the best I can. Having a job is actually caring for my family. Me going to work every day and making money is actually doing exactly the thing that I want to do.

Right. Again, like maybe you wish that you were actually with your child being hands on and there's again that idea of there's grief about the fact that you have to be away from your child. Maybe that's the more compassionate way to look at it instead of it being like, I'm such a bad mom because I'm broke and I have to work and I'm away from my kid.

Can you reframe that as I'm being such a loving mom right now by showing up for work and I feel sad that I have to work to pay for all of those. Yeah. Do you see how just that speak and the way I'm wording it is like, more compassionate? Yeah. 

Deonna:

And I feel like a lot of moms feel this way. Moms across the board feel this way. And it's funny what you said about getting a break because when I started my part time job, which I work from home, but I was excited to think about something other than this, and it was a nice break mentally. I'm still in my home, but it was nice I enjoy it.

Rhandyl:

Yeah. Yeah, I went from working full time and then after Remi was born, I didn't work for four years because of how medically complex she was. Thankfully was able to be able to stay home with her. But then once I finally felt like we were in a good place with our nursing coverage and that she was in a better place medically, and she started going to school and things like that. Then I started back to work part time and I didn't realize how much my mental health needed the work and because I am just naturally a go getter. I just can't chill. I'm always doing something and I feel like it got to the point where I was like a hamster on a wheel in my house and luckily, I love my job. So that helps. 

But having that time where I'm doing something for myself and for my family definitely helps take a mental load off, intermittently, throughout the week for sure. So we were just talking,  Deonna mentioned about the expenses of having a disabled child. Yeah. Yeah, we may have insurance, and we may work and have money, but a lot of these medical things that our children need. They're denied a lot, and so we have a lot of out of pocket expenses. 

And there's some things that we just can't afford we just can't. And that makes us feel guilty because if we could afford this and we may better their life or they may have this breakthrough amazing thing, but it's not covered, and it's so expensive, and we just can't budget it. And so that's another thing that a lot of parents had put in their.. some of their guilt the reasons for feeling guilty around their disabled child is not being able to afford these things. So do you have any advice for parents that are In this situation?

Amanda:

When I read this question, I felt so mad because it just makes me mad at the world that we even have to be in this situation. Like it just feels so unjust to me that, there's this device or this certain thing that if I could access it, my kid would live a better life. And to know that we can't get that to me just feels so unfair. This is a huge problem with the disability community on the whole is these things that our kids need are inaccessible. And so I, my only answer to this and I sound like a broken record at this point is self compassion and just to be like, man this is impossible for us right now.

And it doesn't make you a bad parent. It doesn't make you lazy or whatever message you're telling yourself. I would say if there's anything that you can do with the feelings out of this, it's to advocate and call your insurance company, be a broken record, like use that anger and those feelings there to be the squeaky wheel for legislators and try to maybe the more of us that speak out about this and try and advocate for our kids, maybe there's power in that.

And I guess instead of turning the anger inward onto something that you're doing wrong, it's man, let's throw it back out to that. This is a bigger issue, right? And yeah, one of us should even be in this position to begin with where all this stuff is so inaccessible. Yeah, instead of it being the anger towards you, it feels like it's a, it's just so unjust that we're even experiencing.

Deonna:

It's the system. Yeah. Oh yeah. 

Rhandyl:

And that's why we're doing what we're doing. We're advocating. That's why you're part of the reason you're doing what you're doing and what Deonna and I are doing. Obviously to build this community with people that are like us, but also to educate people that are not in our situation about how hard it is and how much, not only the inclusivity of everything, but just to change the system in general of how we take care of our disabled.

Amanda: 

I was going to say in connecting with other parents too. And if there's something you need is there somebody that has that equipment sitting around? Maybe it's not in the best shape or, I think the more of us disability parents that can connect and be like, okay, what do you need?

I have this weighted vest or I have this, something that, that maybe somebody else could benefit from. I see that all the time in people's Instagram stories and it makes me so happy.   Yeah, insurance isn't doing us any favors, but if we connect together, is there something that you could benefit from some or that you could share an old thing that you're not using anymore?

Rhandyl:

Yeah. It's funny you say that. I actually, I'm on some local and just statewide medical exchange groups on Facebook. And I'm actually, this afternoon, going to pick up something, a porch pickup, a medical supply that I need. Oh, amazing! Yes! That they had extra of, that we're almost out of and something happened, with insurance and we're, it didn't get delivered this month, but yeah, just having that community like you said.Looking for resources like that, it helps.

Deonna:

I think that goes back to us being afraid to ask for help. And there's a lot of things we've all traded things that we have that the other one needs at that time, we can link some of those groups that we're in, like in Texas, there's the Joseph Thomas Foundation that me and Rhandyl both used that helps bridge that gap where you need something, but it's several thousand dollars or whatever, you can get it.

But I think a lot of times being willing to say, we need this thing. Can everybody that's going to give her a birthday present pull that together? Or there's ways to get things and sometimes you do have to be just like relentless and appeal and appeal and things like that, but that one is really hard because we've even one of Allie's prescriptions just changed and I got the bill for it.

And it was free under Medicaid, but then they were saying it was going to be $150 a month now. And you're just like, are you kidding me? And it's almost the exact same thing. And so we may, and the thing too, is if you're not sure about these out of pocket things, if you can, maybe try it for a month or so, see, if it even makes a difference and if it doesn't go back to the, that's just like an example but..

Rhandyl:

There’s a lot of foundations out there that you don't know about until you start looking, 

Amanda:

yeah, any there's a lot out there. There is. And I think something that we keep coming back to is asking for help. Don't be afraid to ask for help. And why is it that we feel so much shame or embarrassment about it? But it's hey, ask for help and you never know. You never know. 

Deonna:

Oh my gosh. When they started a GoFundMe for us when we initially had all this happen, the humiliation and just. Like shame that I felt and guilt surrounding, cause I thought we've been responsible. We've taken care of our finances and now this one thing could send us into a big problem. It was crazy, and I just remember feeling super guilty about that. 

And now when I look back and when people ask me, should I let someone do a GoFundMe for me? I'm like. Yes, do it right now. And people were trying to tell me that and I'm like, you don't know, you don't understand my life, but yeah, you have to let people help you, even if it's uncomfortable because..

Amanda:

People want to help you to love you in any way possible. And. It makes them feel good. So yeah, they're not doing it out of, oh, poor Deonna. Oh, they're like, Oh my gosh, we love Allie and we love Deonna. And hey, if we can send her 50 bucks, then we're doing it, yeah. Yeah. 

Deonna:

Money's a way a lot of people show their love to you and in situations like ours, especially sometimes that's all you can do for somebody when they're in the hospital, you can't go visit them. You can't do anything. That's it. So you have to be willing to accept that. And that's really hard to do sometimes, but yeah. 

Rhandyl:

Amanda, do you have anything else you want to add?

Amanda:

I just wish I could wave a magic wand over everybody and be like, don't feel guilty. I know. That's what I wish I could do. And I guess, right? Me too. The easy button. I would just say, self compassion. How would you talk to a friend? Can you practice talking to yourself the same way? I know it's so hard to do, but we are all out here doing our best. And that's literally all we can do. And at the end of the day,  it's not all about what you're doing.You're a good mom. You're showing up, you're hugging your kid every day. You're feeding them, you're loving on them that's important too. So don't forget about those kind of basic loving mother things that you're doing too. 

Deonna:

I feel like I've had a revelation listening to, just working some of this out in the last hour. I did have this residual guilt from a lot of different sources, like we've realized today. And just shifting that word from guilt to sadness or guilt to grief. I like guilt to grief better cause they both start with a G, but yeah, I used to be a teacher. I like it when things make sense like that, but it really is true. I'm just sad about a lot of things that have happened in our life. I don't think they were my fault. And if they are my fault, I say, sorry, but you know, yeah it's not our fault that these things have happened. It's just a it's a sadness.

Rhandyl:

I agree. I think just realizing that we, when we are feeling that way, just changing our perspective on how we're feeling is what to take out of this today. And so Amanda, we appreciate you so much for coming on and taking the time. We know you're so busy. So fun. And we, yes, we are so happy that you joined us and hopefully there'll be some other fun topics that we may later in the future get to talk with you.

Amanda:

I’m always down.

**Disclaimer

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