Resource Hunter

Hosted by Erica Jolene with special guest Amanda Kaufman, MSW | Transcription HERE



 

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In this week’s episode, I am sharing the conversation I had with Amanda Kaufman, MSW, who previously worked closely with our family through an organization called Division of Specialized Care for Children (DSCC). Amanda does a really great job of explaining her role in DSCC and their mission to help assist families of children with special health care needs.


DSCC was one of the first organizations to step into our lives, they were some of the first social workers who came into our home and began helping us to navigate our new norm with a medically complex child. The beginning of this experience is actually very difficult as it is occurring during a time when you, as a parent, are still learning how to cope with the acceptance of the unexpected that comes with an complex diagnosis. DSCC has played a tremendous role in helping our family to thrive. Not only have they helped to provide the means that has allowed us care for our children at home rather than a hospital or an institution, but they have also supported us emotionally throughout this entire journey.


Please consider voting to help petition for Disability to be a category of its own. By clicking HERE, you will be helping to support shows like this to be more accessible and reachable to those within the disabled community who are searching them out.


Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.


Links related to this episode:

Home Health Nursing

Medically Fragile Technology Dependent Waiver

Maternal and Family Block Grant

Katie Beckett

Resource Booklet

 

Episode Transcription

Erica 00:16

Welcome back to Atypical Truth. I'm your host Erica Jolene. In this week's episode, I'm sharing the conversation I had with a social worker, Amanda Kaufman, who has previously worked closely with our family through an organization called Division of Specialized Care for Children. You will also hear me refer to it as DSCC.

Erica 00:41

Amanda does a really great job of explaining her role in DSCC and their mission to help assist families of children with special needs. DSCC was one of the first organizations to step into our lives. They were some of the first social workers who came into our home and really began helping us to navigate our new lives with a medically complex child.

Erica 01:04

The beginning of this experience was actually very difficult. It occurred during a time when I was still learning how to cope with the acceptance of the unexpected that came with this unknown diagnosis. DSCC has played a tremendous role in helping our family to thrive, really. Not only have they helped to provide the means for us to care for our children at home, rather than in a hospital or an institution; they've also supported us emotionally throughout every step of this journey. They are the people who we can guarantee to check in on us regularly, to tell us about a resource or a charity that might benefit our children, and the even goes so far as to send birthday cards to each of the kids - which I just can't express it enough how touching and heartwarming that singular gesture is.

Erica 02:01

So if you have a child with disabilities, special needs, or a complex medical condition, and you don't have an organization like DSCC in your life already, I would highly encourage you to search one out in your own state. As Amanda explains in the episode, every state should have one, it just may have a different title or name. I'll just go ahead and let you hear more about this program and their services directly from this source, my friend Amanda Kaufman.

Erica 02:38

Hi, Amanda, thank you for joining me today.

Amanda 02:40

Thanks for having me on today.

Erica 02:42

I'm excited to talk with you and learn just some more fun facts about you that I haven't had a chance to talk to you about - which is surprising because we do a lot of sharing when we finally do get together.

Amanda 02:54

I have found that to be true on all the families I work with.

Erica 02:58

Okay, well let's just jump right in then. What did you want to be when you were growing up?

Amanda 03:04

Well, up until third grade, I wanted to be an astronaut was actually what I wanted to be. And I distinctly remember in third grade, my third grade teacher, which I will not name because she's still, she is even one of my favorite teachers I still see are from time to time, but she told me I wasn't smart enough on math to become an astronaut. I was never gonna make an astronaut. And after that, I was like, "well, I guess I have to find something else to do." (laughter) I actually went to school for special education originally and I just...it was really hard in special education. I loved working with the kids and everything else. But I don't know just the pit of my stomach was like this isn't what I wanted to do. So I switched to psychology when I was in college and I graduated with a psychology degree.

Erica 03:54

Awesome. Wow. Do you have a favorite book movie or your TV show? recommendation?

Amanda 04:00

Um, currently my favorite movie is probably Mr. Rogers Neighborhood with Tom Hanks.

Erica 04:05

I haven't seen that yet.

Amanda 04:07

So my God, Erica, it is life changing. You need to watch that movie. I'm

Erica 04:11

Putting up the top of my list.

Amanda 04:13

Yes. And I don't know if it's just because of the time I watched it. It just hit so many chords in my life that that was just what I needed to see. But yeah, it was excellent. He did a very good job portraying Mr. Rogers.

Erica 04:26

Okay. What is one of the best pieces of advice you've ever received?

Amanda 04:33

Um, one of the things is probably when things go wrong in your life you just need to stop and think five years is this really gonna matter? Who a lot of people they get upset about little things. It's just in the moment and they truly don't matter down the road.

Erica 04:46

Hmm. Quality advice right there. That is good.

Amanda 04:51

It saves me a lot of heartache and stuff when I think okay, is this really worth the effort of being upset about

Erica 04:57

I like that. Do you have any pets?

Amanda 05:01

Yep, I've got two cats bank in Berkeley.

Erica 05:06

What is your favorite thing to nerd out on?

Erica 05:09

And I love watching old episodes of Star Trek The Next Generation. And even though I've seen them 1000 times, I still watch them whenever they come on.

Erica 05:18

I do too.

Amanda 05:20

Yeah, there's just so much you can learn from that.

Erica 05:23

Not a lot of people know this about me. But it is definitely like a comfort show for me.

Amanda 05:29

I agree. I have the same feelings about it. My sister I grew up, our dad passed away when we were little. So when we started watching that show, we really thought Captain Picard would be like the best father ever.

Erica 05:41

Oh, yeah, I could see that. He's definitely a father.

Amanda 05:45

That's a lot of the why it brings such comfort that Yeah, I want that as my family. And so yeah, I like it.

Erica 05:53

Okay, are you an early bird or a night owl?

Amanda 05:56

Probably a combination of both right now. I just feel like a tired middle duck type thing.

Erica 06:03

The first time I've got that answer, but I feel like everyone can relate. (laughter from both)

Amanda 06:09

It just kind of depends. If I've got something going on that day. I like, oh, we're going to yard so I can be up like two hours before with no problem.

Erica 06:16

That's like Randy going fishing...

Amanda 06:18

Yeah. But if it's something that, oh, I don't feel like get out of bed. It's kind of hard. I wouldn't really count myself as an early bird. So...

Erica 06:29

That's a very good answer. I I appreciate that honesty. What is one word that would most accurately describe you?

Amanda 06:38

And probably positive, someone I used to work with used to refer to me being a Pollyanna type of a person, no matter what was going on, I always look for the good things.

Erica 06:46

Does that come naturally for you?

Amanda 06:49

It does. And I've had a lot of people say they wish I just knock it off.

Erica 06:54

Well, that's kind of unfair. If anything, I I'd hope that that's a little infectious, it could, you know, rub off on people.

Amanda 07:01

I just, you know, I just, I've always been like that even as a child, I just no matter what's going on, I just look for the good things. And, and it served me well through the years. So I just keep doing it.

Erica 07:12

I have preached in the past the importance of finding the silver lining in things...

Amanda 07:18

Most definitely.

Erica 07:19

And that may not be for everyone..and I understand that. But it definitely has gotten me through some very difficult times.

Erica 07:28

Exactly. And I also think going on with that. Just everything happens for a reason. And you may not know, you know, five years ago why something happened? Somewhere along the line is going to come up. But oh, that's why I was in that place at that time.

Erica 07:42

It's hard to hear those words in the moment.

Erica 07:45

What is one thing you're presently grateful for?

Amanda 07:48

Um, well, one back to the 2020 thing. I think it taught me a lot about being grateful for like little things, you know, time with family. You know, we always call them Family Fun Days, whenever we all get together. And, you know, the fun days, we had together just little moments. You know, making time for myself, that was something that I'd never really taken the time or a priority to do it until I was forced into that situation with the pandemic. So I think that's why a little things like that, that really are what's important right now and just having people that believe in me.

Erica 08:19

What comes to mind when I ask you to recall a memory or a moment that brings you great joy.

Amanda 08:26

One of my favorite memories is when we were kids, my grandparents made sure we went on like the typical family vacations where you load up in the car, drive through 12 states in two days or whatever. And one of my favorites - granted today's they would not, this would never happen - but it was my aunt and my grandparents and me and my sister and I was maybe 10 or 11 years at that age. My sister's four years younger. They had taken my aunt's little S10 truck with like a cab and a half. And my grandpa had built, he taken like the seats out of a car, and mounted them up in the back of the truck, like bolted them down with like a little console in the middle, and they have like a camper shell on it. And my sister and I rode all the way to the beach on that vacation. And they'd let us each bring up like a box of Barbies. And we played all the way down there and all the way back. That's probably one of my favorite vacation we went on.

Erica 09:14

That does sound awesome! And so illegal nowadays, but totally awesome!

Erica 09:20

Oh yeah. Now it would never ever happen. But back then it was like oh, that's okay. And I remember even put like seatbelts in because I remember having to wear a seatbelt but we were in the back of a truck and it was all stuck here. We didn't move around or anything but we played all the way down there and all the way home and and that was probably one of my favorites.

Erica 09:38

That sounds amazing. I can feel the warmth in that too. Can you describe to me a little bit about yourself and what you do.

Amanda 09:47

Okay, well, I've always had the desire to help people and make a difference in their lives. And when I started with DSCC as a customer service assistant, I was always reaching out to help the care coordinators with the family on their caseload. And one of the benefits for our agency is educational assistance for those who want to go back to school, and social work just seemed like such a natural fit for me. So I took the opportunity, and I just recently finished my Master's in Social Work.

Erica 10:12

That is awesome. Can you tell me a little bit about DSCC, and your role in it, and what you do as a caseworker at DSCC?

Amanda 10:21

Yeah, as you know, from your experiences with the kids, when you have a long hospital stay, the social worker helps you with resources and supporting you and your family with anything that might come up. I'm kind of the at home version of that, if you will, I regularly check in to see if there's anything I can do to help.

Erica 10:36

Okay.

Amanda 10:37

DSCC is the point of contact for the Medically Fragile Technology Dependent Waiver. So throughout the year, I collect documentation to support the reasons why a child needs to continue to be a waiver participant. The needs of the family, they kind of guide me on what else I do. Some families needed assistance when their problem arises with like nursing services or supplies. Sometimes I find resources for families help meet their basic need or something that insurance might not cover. I have attended IEP meetings with families to help advocate for their child's education. And for some families, they just need someone to listen to their story and understand what they're going through.

Erica 11:13

And so some states, I'm not sure some states may not have DSCC but they might have an equivalent of that. Can you explain that?

Amanda 11:21

Yeah, a portion of our funding comes from the Maternal and Family Block Grant, I think it's called. So a portion of that. So every state has a portion of funds like that, that they use. So every state has a program like ours, just they're not exactly the same requirements and stuff. But they all serve the same population.

Erica 11:40

Yeah, and I'm learning from talking with other families that they may not have the same requirements, they may have more or they may have less.

Amanda 11:48

Exactly.

Erica 11:49

But they may also not cover the same resources or, you know, or the way they distribute that kind of coverage is in like a chunk of money every couple of years or...

Amanda 12:00

Well and the history of it, tt all started with a little girl named Katie Beckett. Katie Beckett and her family and want to say they lived in Iowa, maybe...that's where it started. It originally started, like when Reagan was president. She was a little girl that was in the hospital a lot from the time she was born till she was like three or four. And her family advocated very well for her about, "you know, hey, we can do this at home, if we had some help, we could take care of her just as good as the hospital can, if we had a system." And they took it on up and it got the attention of Ronald Reagan. And they were so passionate about what they could do and how it would be a better alternative not only for Katie and her family, but you know, cost so much less than her staying at the hospital. So that's where it all started. So a lot of the states have the program, and it's actually referred to as the Katie Beckett Waiver Program.

Erica 12:53

Wow.

Amanda 12:54

Yeah. And she actually just recently passed away in like, the last couple years as an adult, and she's got to spend her entire life being taken care of by her family with, you know, nursing services in place and stuff like that.

Erica 13:06

Oh, wow.

Amanda 13:07

So it was really an amazing story.

Erica 13:09

Well, thank you to the Katie Beckett family, because yeah, their work in advocating for so many families, like our own has definitely been beneficial to kids like ours, and to families like ours. So thank you to them. That's amazing!

Amanda 13:28

But yeah, it all started with a mom just like you, Erica - that, you know, wanted what was best for her child and was willing to, you know, step up and get that resource for her.

Erica 13:38

I think about the families who may not have experience in advocating or who may not be able to for a variety of reasons and how this one action of that family has done wonders for families like that - who deserve it just as much as the next but you know? Maybe it's a single mom working full time...how does she have the ability to advocate when you're so busy just, you know, caring for the kid and working? So...

Amanda 14:05

Yeah, that's one thing I always strive to make sure the families on my caseload know, you are your child's best advocate. You know them the best. If you think something's off, or, you know, the doctor is just not listening...you know, you're the one that needs to fight for your child, and make sure, and be willing to ask the questions and not stop until you get the answers.

Erica 14:27

Asking is the big key.

Amanda 14:29

Yeah. And I mean, it is tough to, you know, slip into that role of being an advocate for your family. But yet the parents are the best advocates for their children.

Erica 14:38

Yeah. So what aspects of your job do you look forward to?

Amanda 14:44

Well, I love being able to make a positive impact on someone's difficult day.

Erica 14:48

You do that very well.

Amanda 14:50

Well, thank you. Sometimes you do not realize it's just the little things on a regular basis that has some biggest impact. I love finding resources and I love being sucessful at finding something that family needs.

Erica 15:01

Yeah, you're a Resource Hunter, I like that.

Amanda 15:05

You have to be in social work that comes with the territory.

Erica 15:09

I was hoping if I went into the field of social work, they'd pull up this magical book that we didn't know existed and they'd say "here, here's the book of all the resources you just never knew about, but they're here, they exist in this one concise book." And that does... That's not true. That's not reality.

Amanda 15:26

That would be awesome if it worked out that way. I kind of enjoy the thrill of the hunt, though, in trying to find what works for family and stuff. But yeah, I wouldn't turn the book down if they gave it to me, right?

Erica 15:39

What aspects of your job are difficult or challenging?

Amanda 15:44

One of the hardest things I had to accept with my job, or there's just sometimes things are just out of my control, and I can't fix it. No matter how hard I search, there just might not be a resource available. It's also challenging have a family is not willing to accept the help I can provide. But the hardest is when we lose one of the kids on my caseload.

Erica 16:03

Yeah. (long sigh) That's not easy.

Amanda 16:08

No, it is not.

Erica 16:12

You typically see families at an extremely vulnerable time in their lives. I mean, that first visit when you come into their home, it can be really difficult, especially as it requires so many conversations regarding what our children cannot do, more so than what our children can do. It's hard. It's emotionally excruciating, and just heartbreaking. And then we also have the added conversation of how Home Health Nursing would be beneficial. So you're essentially telling a family, there's this service, where you could have someone come into your home and help you. And sometimes that's not an easy thing to accept. So I was curious to know, how do you approach that conversation in a way that makes the idea of releasing some control and letting someone come in and help a family be easier on them?

Amanda 17:16

Well, the most important thing is I build a rapport with the family, I get to know them before I go out. Usually I call them, we talk on the phone, I get an idea of, you know, what's important to them. And they always ask them, you know, what do you want? What do you want your child to do in a couple years? You know, what's your goals? And we kind of, you know, go from there. I always, I mean, I go in with a plan. But at the same time I let them take the lead. If we're having a difficult conversation about oh, they don't know if they want nursing in the home, you know, why not? You know, how could it benefit you?

Erica 17:47

Yeah.

Amanda 17:47

And stuff like that. So I meet them where they're at. That's really the biggest thing I do.

Erica 17:52

That's really helpful, too. It sounds like you let your heart lead your work and your actions.

Amanda 18:06

Yeah, I do. Um, every every, every family I work with, they teach me things throughout the process. So I feel that I'm continuing like improving what I'm doing kind of like what were their families that because it's what's important to them. To me, it's just I go home, at the end of the day, you know, you guys are the ones living it and in the trenches, and dealing with the nurse at the house. And you know, I just want to make the, like the whole process easier for you.

Erica 18:31

Yeah, and that's helpful for families like us to hear that you're on our side, you're there to make it easier. We hear a lot of scary stories I you know, you always hear it's like reviews, you see the most polarizing review, when you look at an item, you hear the best, or you hear the worst. I think that's how a lot of families feel with all these services, and they come into our lives, you either hear the best, or you hear the worst. So it's really great to hear your perspective working in the field, that you are here for us. That's huge.

Amanda 19:04

Well, like I said earlier, I'm kind of the go to person for you. You don't have that support of a social worker at the hospital. That's what I'm there for. Even if it's something small, little problem, you know, let me know, let me help. You know, so many families will you know, "Oh, I didn't want to bother you with that," or something. And then it becomes like a big problem. And it's like, okay, now we have to deal with a big problem. Whereas before, we could have just dealt with a couple of little problems along the way, you know, so, but yeah, that's the biggest thing is I'm just here for you. If you need assistance in any shape, or form, that's me.

Erica 19:35

Yeah. How do these experiences impact you and what do you do for self care? Those are two kind of different questions, but at the same time, hearing you say that you give these you encourage families to reach out to you about any little thing. I just imagine your phone constantly buzzing so...

Amanda 19:57

Yes, it does. But I mean, the biggest thing, Erica, is I enjoy what I do. You know, at the end of the day, I know I made a difference. So I think that's kind of, you know, the how it, you know how I manage it, even though it can be overwhelming. And but for self-care, you know, in all honesty, I never even considered anything about self-care until the pandemic last year. I think part of it was just not taking the time or making it a priority. I do listen to music from time to time, and I've got certain songs that I will listen to, because they kind of center me. I write in a journal. I talk to my sister and close friends. And sometimes it's just nice to get lost in a good book or movie that can take you away, even if it is just for a little while.

Erica 20:38

I agree. That's, that's really good to hear. You guys need self-care, too.

Amanda 20:42

That's one thing our agency has really been promoting so much more since last year with self-care, my manager checks in on a regular basis, to make sure we take time for ourselves and the lines of working from home aren't blurred.

Erica 20:55

That's amazing.

Amanda 20:57

It has made a huge difference in those last year.

Erica 20:59

I hope that is something that is sustained. Even before the pandemic, we had these same needs and these same limitations before we experienced burnout and to know that people are learning the importance of checking in...that's huge.

Amanda 21:17

Yeah, I think it made us you know, stop and think about a lot of stuff last year, you know, everyone was kind of in the same situation. So...

Erica 21:27

I want to talk about something special that you did for complex needs families in Illinois. And before we get into it, I just want to say that I love the fact that you involved many of the families you knew to make this project what it is. So without giving away what you've done, I want you to tell us about this, if you don't mind?

Amanda 21:55

Well, I think you're referring to the Resource Booklet that we put together...

Erica 21:58

I am.

Amanda 21:59

Okay. Well, actually, it all started out as that was my plan B option for my internship.

Erica 22:04

Hmm.

Amanda 22:05

Due to the pandemic and change in life as we knew it, I was unable to do what I originally planned.

Erica 22:09

It's like me in this podcast!

Amanda 22:11

Exactly! One of my previous classes, I had to create like a resource list for families with medically fragile children. And doing that I realized there's just not a lot out there for those families. Which it got me thinking how wonderful it would be if we had a family handbook for our home-care families that has all that information, what they need in one place. So it just kind of naturally progressed into, you know, creating one. So it's been a group effort, though, to put it together, and one of the other employees was going through an internship. So, we teamed up and started the process, figuring out you know, any family is just finding on what would be helpful. And then I reached out to different coworkers within the agency to get their views. And then as we went along, we did start talking to families. And we learned more about what's important to them, and what they wish they would have known in the beginning when they first received their child's diagnosis. And we made sure to include that in the handbook. And I really think getting that family information in itself is really what it's made it into what it is now, my biggest hope for it is that it'll be a comprehensive guide for families, not only will it offer the resources and help during different stages of their journey, because it goes all the way from like coming home from the hospital with a newborn to you know what guardianship looks, like how to apply for guardianship and stuff when the children get older. But will it also let them know that they're just not alone in what they're dealing with, and maybe offer them some hope.

Erica 23:34

Now, will this be published at some point, so other people outside of DSCC can have access to it?

Amanda 23:41

Yeah! All the families are going to be getting copies of it. And then we're also going to put it out on our website. If you look up the Division of Specialized Care for Children in Illinois, it'll be listed on one of our resources. So anyone be able to have access to it, okay.

Erica 23:58

You enter the homes of many families like our own, is there anything you can tell us regarding common themes that you see, that might bring us comfort in that feeling of being alone in this?

Amanda 24:15

Yeah, home visits, that's one of my favorite parts of the job. And I am so looking forward to the day when it's safe enough for us to resume them. I gain so much more from going into the home and seeing the interaction with the families. You know, families never realize how much they truly do for their child because to them, it's just the normal routine. But during home visits, I like to thank them for what they're doing, and remind them how much of a difference it is making. You know, I can I can get so much out of a phone conversation, but to actually be in the house and you know, carrying on a conversation about, you know, the renewal or what the goals are. And a parent says, "Oh, wait, I get a section my child." You know, they just think oh, that's just a normal thing you do, you know, and it is to them, but I don't think they realize how much how important that is, that those day to day stuff really is.

Erica 25:02

Yeah, I think, you know, recently we had to, we're advocating for kradic has to be getting kind of higher level status because he's got a new device. And the notes do not reflect the daily sweat and panic and the daily dance with oxygen that we go through. And you know, really just hearing someone say, "you're doing a lot, this is a lot, I'm proud of you or you're doing great." It's validation. You acknowledging that while you're there, we appreciate it.

Amanda 25:40

Well, I'm glad you appreciate it. To me, it's just I'm just pointing out, "Yeah, you guys aren't doing a lot," you know. And...

Erica 25:46

So now, I really kind of want to get a little personal with you if you're open to it...

Amanda 25:51

I am.

Erica 25:53

Through knowing you because of DSCC, and somewhat personally now as having been our caseworker, and you and I had communicated about the caregiving experience in general. And it turns out you had that in your personal life when you were caring for your mother. Did your experience with providing that kind of caregiving to her, did it change the way you approach families like ours who are also in the role of caregiving, and even facing the end of life care?

Amanda 26:27

It did. Well, for almost a year, there was constant appointments, monthly procedures and frequent hospitalizations. But as crazy as it sounds, the memories I made widely, my mom's caregiver was some of my favorites. But yeah, I do feel that those experiences have, you know, helped me become even more in tuned with what the families are going through. I can relate now to the confusion of getting different opinions from different doctors. I know how frustrating it is, when you think you've got one problem solved, and then something else pops up and goes wrong.

Erica 26:57

YES!

Amanda 26:57

And when talking about long term hospital stays, I can, you know, offer suggestions to make things a little easier on based on what was in my hospital bag. And I feel like I'm a little bit more sympathetic and understanding with families who are faced with those tough decisions that have to be made because I've been in those shoes. I know how hard it is. And unfortunately, I can offer you know, suggestions and help when it comes to you know, what hospice care looks like in your home, because we did that with mom. But you know, after we lost mom, so many people came up to me, you know, and told me Oh, they don't know how we endured it, or how we did it. But you know, when you're going through everything, you never realize how strong you are, until that's the only choice you have. And I see that with the families I work with. They don't realize all that they're enduring, because they just know they love their child and will do anything in this world for them. They struggle through the tough times with hope that better days are ahead and most importantly, they realize the importance of a moment and how to make the best of a good day that they're having.

Erica 27:58

Yeah, you know, you said something in that, that I really resonated with me, or at least I can relate to is when people say I just don't know how you do it. Can you tell me your real reaction to that?

Amanda 28:17

(chuckles...) Um...Yes, I can.

Erica 28:17

The hard earned, unapologetic truth.

Amanda 28:21

You know, when we were, you know, well, let me give you a little backstory...

Amanda 28:24

My mom's liver started failing. And when we saw the liver doctor in May, he told us later, when we had to make the decision to put mom on hospice that he was just so enamored. But my sister I, we just worked well as a team. We took turns, we were always there, we advocated for mom. We wanted to make sure she was getting our best care. And we did what we had to do. It was nothing for us to spend, you know, weeks on end at the hospital. That's just what we did. We didn't really think anything of it. We made the most of it. We'd watch her favorite movies, and we'd plan vacations with her, and all sorts of things. But, you know, he told us then, he's like when he first met my mom, he thought, "oh, she'll be gone in eight weeks." That's usually when your liver starts decompensating like hers was it's an eight week process. We had mom for an additional eight months.

Erica 29:15

Wow.

Amanda 29:16

You know, at the time, we just did what we had to do. That's just how it was. You know, but yeah, we did have some people come up afterwards..."Oh, yeah. You know, I would have helped," you know, and...

Amanda 29:26

I'm like we've offered we sent messages out to everyone, "Hey, mom's got this appointment, or mom's got this. Who can help? who can take it?" But you know, looking back on it, it really didn't matter if they didn't help because those were good memories. You know? She loved his movie Spencer's Mountain. I don't know if you've ever seen that movie. It really isn't the best movie to watch when you're in the hospital because it's got a lot of sad parts to it. But that was my mom's favorite movie. So every time we went to the hospital, every you know thing she always wanted to watch that one. And at the end of the movie, the kid is getting ready to go to college, and he, the dad says, "going far," and he says, "right far." And that's how that movie ended. So kind of every time they wheeled her back for a procedure, whatever, I would always tell mom, "going far." And she would always say, "right far." So it's little things like that I've got those memories.

Erica 30:20

That's amazing. Wow, I am so happy that you have that. And I think the component in that comment that a lot of people don't maybe realize to be hurtful or, to kind of come off the wrong way is that if you have any ounce of love and compassion for someone, you would do it.

Amanda 30:44

Exactly.

Erica 30:45

If it was your parent, if it was your child...

Amanda 30:47

You do what you've got to do.

Erica 30:49

Exactly. You just figure it out. It's messy. It's complicated. It's painful. But the beauty that you experience from showing up and doing it, it's worth all of it.

Amanda 31:06

Oh most definitely.

Erica 31:07

And that's what I just heard in your story.

Amanda 31:09

Like, right, like I told you, though, Erica...those memories, no one can take those away from me, I have those memories. You know, and everyone like, "Oh, you know what, it's a shame she was sick." But, you know, that really brought us closer together, because she was so sick. So and we we learned to make the most of it, when she was having a good day, we would, you know, do what we could to make the most of it, when she was having a rough day or a bad spot, you know, we know looked for that there was gonna be a better day coming.

Erica 31:36

You know, by sharing this component of your life, one that we - and by we I mean, families receiving services through DSCC - we often don't get to know this side of people. And so for us, it really helped us to better understand your personal struggles, really just your lived experience. And this experience of learning this about you, it resulted in a shift of our perspective, regarding your role. You went from just being another wonderful, nice, you know, caseworker, to a friend who we cared about, and we could relate to we, we understood your struggles, on a different level than we did before. So I'm curious to know, do you have any regrets about sharing this part of your life with us or other families, if you did?

Amanda 32:32

Not at all! I think it really does help. You know, because before I would, you know, like I've had a family recently, you know, they were going through some challenging things, they're in the hospital a lot. So I suggested, "hey, you know, leave a bag packed in your car with your phone charger, and kind of a go-to bag. So when your kid is sent to the hospital, you've got all the essentials to get you by," you know? Mine was always the phone charger, peanut butter M&M's, my extra Kindle, you know, laptop charger, so I could just throw my laptop in, and a change of clothes, and a toothbrush and toothpaste. But I told them, "you know, leave that in the car," and they're like, "oh, whatever." I was like, "No, really, it'll make the difference." And then I said, "I like, I used to do that with my mom, I still got the bag packed. You know, even though she's gone, I still got it packed." And so then they, like the next time I talk to him, after like the next hospitalization or whatever, the family's like, "You know, that really did make the difference." As crazy as it sounds, knowing all that stuff was already in the car when the ambulance was taking their son to the hospital. You know, they didn't have to rush around the house gallery and all that it was already there for them.

Erica 33:36

That's great advice. And you know, this kind of sharing of your personal journey with families, it fosters a genuine dual-relationship that we don't often get. And I can't speak enough to how important that dual-relationship is when so much of your child's well being is determined by entities that make decisions who you've never even met.

Amanda 34:06

Mm hmm.

Erica 34:07

You know nothing about so that's, that's huge. And I'm so glad you're able to do that.

Amanda 34:11

Well, like I said, I think you know, having that experience has, really, did make me you know, stop and think what our families deal with on an ongoing basis.

Erica 34:22

You know, you said something about the hospital bag and I kind of wanted to touch on that. I should know, right? I think about how many times our kids have been admitted. There's also a little bit of PTSD and maybe trauma associated with having a bag I almost feel like if I don't have the bag, I'm not asking for it to happen.

Amanda 34:42

Yeah. I understand. And I I joke a lot that, "oh my bag is still packed," - it really truly is packed, in my closet, still to this day. We lost mom and February 11th, of 2020. Bags still packed, ready to go. I think I've taken, I've taken the stacks out finally, but the toothbrush, all that still there, because my theory is, as long as my bag is there, I'm not going to need it anymore. You know, we're not going to have any more problems, I'm not going to have to go to the hospital because I got the bag ready to go, you know, so...

Erica 35:11

I need to adopt that perspective. And you know, I can't tell you how many times that would be very helpful because I think about when one of the kids has been life-flighted from our local hospital, even though our home is like five minutes away from there, from the local one. That step of going home trying to get all your items together, meanwhile, stressing about you know, is your kid stable? Are they okay? You need to get to that ER, three hours away, as soon as possible. Because the helicopter is gonna get there in like, 45 minutes. So yeah, I, I think that will be my goal.

Amanda 35:56

But yeah, definitely, it definitely made things easier, especially like, I get a phone call when I was at work two hours away, "Your mom said at the hospital, you know, get here as soon as possible." There was no stopping at home and grabbing stuff, you know, so to have that, you know, stuff to make things a little easier right on hand, it made things so much better.

Erica 36:14

Feeling prepared, is empowering.

Amanda 36:18

Exactly, exactly. And in there...we also, I always kept, like mom's medication list was in there. And I kind of have the rundown of what we were dealing with. And you know, when was the last time we'd gone to the doctor and that kind of stuff in there. Another thing I found really helpful, is I was able to access her medical records and stuff on my phone. So like, because we were seeing doctors in Springfield and and St. Louis. And you know, their systems did not connect. So like when they would call, it might be a couple of days before they got a phone call back. So having that information. "Okay, labs were just done. This was the results three days ago." You know, yeah, having that stuff on hand, it did make things so much easier.

Erica 37:01

Yeah.

Erica 37:03

Okay, Amanda, final questions. Many people in society, they have no understanding of what you know, DSCC is, or even your role working within the organization, or even as a social worker, and how that role impacts the lives of children with disabilities. And I want to ask you this question, because there are probably some amazing future social workers out there, who have never even considered working in this field before now. And with that in mind, I want you to tell me what aspects of, you know, social work, social work within the DSCC organization, or even just working with families like ours...What would be beneficial for others to know and have a better understanding of?

Amanda 38:00

Well, as far as like working with families go, I think we kind of touched on it earlier. You know, a lot of times families just say, "Oh, I didn't want to bother you with that, or that was such a small thing." You know, I'm here to help you, you know, with anything. And it's just so much better if we can, you know, deal with a problem, why it's small, versus I don't want to deal with that right now and it becomes a larger problem. You know, we can, you know, get on top of things kind of put the fires out as they come in, you know, that kind of stuff. I think that's the biggest thing.

Amanda 38:30

But as far as future social workers go, I think my advice to them would just be, you know, make the most of whatever experience you go into. And, you know, be willing to help the others. You know, there's the world lacks kindness. And that's one thing I think social workers really, you know, strive to be is because you never know what someone else is going through in the past, or currently, that's made them who they are. But it doesn't take anything just to be kind to someone and it makes all the difference.

Erica 38:56

Yeah, that's really good advice. Okay, this is a fun one. It's kind of hypothetical in nature. Let's pretend for a moment that a miracle happened overnight, and suddenly, without any warning DSCC and the field of social work in general became this perfect, flawless career and system that you had dreamed for it to be. Without anyone telling you that this miracle happened, what is the first thing or change or difference that you would notice, which would indicate that this change happened?

Amanda 39:38

I think the biggest difference is there'd be a book I would have that would have every resource, no matter what the situation, I could just flip through and say, "Okay, this is how we're going to solve this problem."

Erica 39:49

That magic book we talked about earlier.

Amanda 39:51

Yeah, that magic book. I think that would be the biggest thing is having possession of that magic book that would have it all. Yeah, that would be my you know, dream world right there to have that.

Erica 40:00

Yeah, I think we all want that.

Erica 40:04

Amanda, this has been awesome. I'm so grateful that you took time out of your day to sit with me and have this conversation. Thank you.

Amanda 40:12

You are very welcome. I'm so excited. See how far this is going to go, Erica and how much of a difference this is gonna play, not only for the families, but also, you know, the people that work with the families to get like more in depth interview of what goes on in your lives. It's that I think that's awesome.

Erica 40:29

Yeah, I really hope so. Thank you for your kind words. I've really enjoyed my time with you.

Amanda 40:37

Yeah, I've also enjoyed it. Erica, thank you so much.

Erica 40:46

I feel like we were really lucky to have a social worker like Amanda, because she understood the role of a caregiver. And I'm certain that her experience has lent to the compassion and the dedication that she puts into her work helping families like our own. For the record, I did finally get a few steps closer to having a hospital bag ready in the wait. This is actually a conversation that comes up a lot for families like our own. So I'll be sure to post some photos of my hospital to-go-list. And I'll also share more about some recently purchased items that really leveled up the hospital sleep over experience. And you know, I'd like to hear from you guys. If you have any sort of advice, recommendations, tips and tricks to make hospital stays a little bit easier, I'd love to share that. Go ahead and send a message to me via Instagram or Facebook at Atypical Truth. I have included the DSCC website information in the show notes. They have a lot of great resources listed on their website, especially for those of you who reside in the state of Illinois.

Erica 41:59

Thanks to all of you, for your constant love and support of this podcast. I am very excited for some very big changes that will be happening for Atypical Truth in the weeks and months to come. We plan to start helping our community in tangible ways with our personal mission of actively changing lives, one podcast conversation at a time. But for now, I will just have to keep you at the edge of your seat with this exciting and mysterious news. If you are enjoying this podcast and you want to help to see a grow, please hit that subscribe button. Your rate and your review of this podcast will help it to become more visible for those who are searching it out.


If you can relate to this content, and you're interested in being a guest or hosting your own conversation, please don't hesitate to reach out to me. You can reach me through the website at www.atypicaltruth.org. You can also find Atypical Truth on Facebook and Instagram.


One way to help promote this podcast more widely, for those within our disabled and medically complex community, is by sharing it with as many people as possible. By simply taking a few minutes to subscribe, rate, and review this podcast; it will become more visible to those who are searching it out. (You can do so by following this link)


The beautiful soundscape behind this podcast is titled Rugla, it's performed by my favorite contemporary music collective, Amiina. The cover art for Atypical Truth was designed by Kendall Bell.



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