Shining a Light on Caregiving Youth: Insights from the "Hidden in Plain Sight" Series

In this wrap-up episode, we discussed the "Caregiving Youth Hidden in Plain Sight" special series, a collaboration between JJ and Natalie and My Care Friends CEO Todd Keitz and Katie Seymour (VP of Programming and Community). We were all amazed at how eye-opening it was to learn about the challenges faced by young people caring for family members with disabilities or illnesses. We highlighted the wisdom and resilience shown by many of the youth caregivers featured while acknowledging the need to support those struggling.

In this episode, we underscored the vital role of policies, programs, and community coordination in identifying and assisting youth caregivers, drawing inspiration from successful initiatives in the UK. We stressed the ongoing need to raise awareness and provide resources to connect youth caregivers with the support they need. We urged our listeners to visit the podcast's website, where they can access the full series and contact information for the various organizations featured. We aim to create a centralized hub of information, empowering and assisting this often-overlooked population.

We also discussed the hidden nature of many caregiving programs and the challenge of self-identification among youth caregivers. We discussed ways to help overlooked youth, including a broader focus beyond the US, and the significance of awareness within the community, including schools and teachers.

Transcript

Natalie: 0:00

Kristen daukas, Hey folks, it's your favorite sisters here with the Confessions of a reluctant caregiver podcast, this episode is part of our special series caregiving youth hidden in plain sight. We're partnering with my care friends to feature organizations who offer services and support to millions of our youngest caregivers worldwide. Now let's listen in as we learn more about these amazing organizations. You know, it seems so appropriate we would come into the wrap up session with Todd laughing, because honestly, this collaboration has been a lot of fun. It's been insightful. It's been fantastic. And I am clearly talking about Confessions of a reluctant caregiver and my care friends partnering to bring you the caregiving youth hidden in plain sight, special series. And it has been, it has been a special series. I'm here with my peeps. So what our audience doesn't know is that we refer to our group as peeps, and we love peeps, and we're talking about the little yellow, squishy bunnies that nobody actually likes to eat, like the Easter but we're here. I've got JJ, who is the super peep. I've got Katie, most Fave peep, without question, and Todd, who is also a Fave peep, guys, this has been great. I'm gonna I'm gonna stop talking. Let you guys chat in.

JJ: 1:27

I'm gonna jump in and say Natalie is the fourth favorite peep, just so everybody knows that. So I'll chime in back behind Natalie and say it has been a great series. It was for me, guys, it was something I wasn't used to dealing with. And that's the youth population in caregiving. And I know Todd, when we started this whole discussion, you had the familiarity with it because of the AAC, why it has been and I think probably for a lot of our listeners, really eye opening, because I didn't know all these kids, and I call them kids, all these kids were out there caring for not just somebody with a cold, but people with real, real disabilities, real illnesses, just like we do, just like I do for mom. Yeah,

Todd: 2:14

absolutely. And I go back to the beginning, when we first started talking about it. I mean, we had a list of topics we were going to work on together, and that was, that was the one that just jumped out to us, yeah, and we jumped on board and yeah, you know, my experience with AAC y has been very eye opening for me. I always knew of caregiving youth, but I didn't realize about an organization that happens to be 20 minutes for me. So the fact that we are now, have taken this and helped the whole movement. It's just everywhere raise awareness, just, you know, it's it speaks to my heart. Yeah,

Unknown: 2:52

absolutely, yeah. I can piggyback on that as well. I am in what we call the sandwich generation. I have two little ones, so I'm a parent, and the thought of, you know, our young people continuing with this isolation, perhaps loneliness in that role, and maybe not even knowing that is what they're experiencing, is pretty was pretty eye opening to me, and I think I'll double tap on what Todd said, the awareness is huge, and I love that we're sharing this and thinking about how we can support this now and into our future.

Natalie: 3:27

You know, I will say we had, I can. I can. For our listeners out there, there was a little bit of momentum that we didn't expect, because there was a special feature on NBC, and they featured both the AAC wife, which is American Association of caregiving youth, and Kasim, who was also featured in our series. They've got information on our website, and we had, there was a lot of chatter, and then the series came out. So I felt like that was really a big blessing, because we had some momentum going into it, and then there was a lot of programs that we just simply didn't know about. And it seems so appropriate that the series is called Hidden in Plain Sight, because so many of there are so many programs out there that I think that are they're local or people, once you know about them, you're like, Oh, how did I not know about them? But I think there's and the first step, like any caregiver, and this is what we've all seen, is caregivers don't self identify. And why would our children self identify as caregivers?

Todd: 4:34

Yeah, absolutely, yeah, that's that's the hardest thing is, I didn't think of myself as a caregiving youth, most kids don't, I mean, kids are just busy, focused on their day and what they got to do. And just like adults, you know, adults think they have the they think they have the corner on stress and anxiety and having to deal with that. And you know, kids, especially kids who. Caring for loved ones. I mean, my gosh, think about that, just the pure act of that, let alone what that keeps them from being able to do, whether it's play with their friends, be a part of an after school sport or whatever, just going

JJ: 5:15

to each of the podcasts. And if you're listening and you haven't listened to them, you really need to what I was really touched by with all of these is you didn't hear any real negative though. I think about Aditya, who was one of our, one of our guests from England, and his comment was that he he just always knows, he always knew, and he knows the fact is, he'll always care for his brother. There was just a given. And I didn't there was, I think about Caitlin, who take, took care of her, her grandmother, and you know, they all have used it almost as a springboard. I mean, with Caitlin in particular, she has like, two podcasts. She graduated school early. There are so many directions. I know that a lot of these kids can take it, and they just have they've seen the good in it. And as an adult, sometimes that's hard. And the lessons I learned from these I still call them kids, and they really are like super adults, you know, because some of them have the wisdom of a 40 year old at this point or older, their wisdom is just unbelievable for you know, 12, 1314, years old?

Todd: 6:28

Yeah, I want to jump in there, because there's a good point I was, I was talking with Sarah Poole from AAC, why last week? And yeah, we talk every week for the most part, and she made a really good point. So, JJ, you mentioned just the wisdom and so forth and so on. And we're seeing that, and what we're doing, you also have to recognize and keep in mind that a great percentage of them that are drowning, Oh, totally, right. And so it's, you know, it's great, these incredible people like Kaelyn and Adi Jens and the others have been able to raise, help raise the voice of that. We also have to be very, very cognizant of the great majority of them are drowning and and those in particular are what we're here to do with this series and overalls. Let's help them.

JJ: 7:18

I do have a question, and I think this is for all of us, what do you see as with the kids that are being overlooked? And I think about the girls from Australia, what are the things that as adults, what are we looking for, like teachers and just adults in different programs? Like, how can we help these kids? Because I think that was the goal of the whole program. Yeah,

Unknown: 7:41

I think that's a great point. And as I, as I'm thinking through this, I love how we really looked at this in a wider lens, a broader lens, and not just a focus on the United States, because this is, you know, a this is an issue everywhere. And I think from a perspective of education, it's that curiosity, it's it's those questions. It's really breaking outside of the classroom for our educators to really, kind of dig deeper and ask those questions, learn about friendships, learn about what may or may not be happening at home, expectations and really empowering our youth to to step up. And I heard a lot of that, in particular with, I believe it was the Lorenzo's house recording, which was amazing. It was, you know, Olivia, it was remarkable. And that organization is wonderful. I would just love to see that spread, yeah,

Todd: 8:39

yeah. And I think the awareness part. I mean, let's face it, that's why we're doing this. Why we did this series is to raise awareness. And I keep coming back, and I've mentioned this in a couple of the podcasts that we've done, and I mentioned it a lot. It's, it's awareness for the greater community. But Katie, you touched on it when you talk about schools and teachers and so forth, even if we go down to the teacher level, it's being aware that you have kids in your classroom that are in these roles and understanding that. And I go back to this video, which we've talked about before, which is, I don't remember what country it was made in, but it shows the kid coming to class every day and the teacher not looking at him and, you know, smacking his hand with a ruler and so forth. Until one day that teacher was out in the morning and saw this kid wheeling his mom somewhere. And then the kid came in, put his hand out, and the teacher said, put it down and put his hand out and give him big hug. I mean, that's what that's really the importance. That's the epitome of awareness. And it shouldn't take that to bring that level of awareness about this. Yeah,

Natalie: 9:55

and I think what we did here, especially on our policy panel, but we heard it from the. International Panel consistently time over time. Like the UK, in my opinion, is winning right now. If you don't know this, they have a very coordinated effort. They have surveys in the schools and that the youth actually fill out themselves. And then we don't have that in the United States, I think Rhode Island is the only one that is doing some school based surveys of youth to help self identify. So yay for you. But the reality is, is what we as adults can do is have policies that support them, the sisters that are that are on right now, this that are coming up, actually this week, Nala and Aaliyah, they got, they have gotten detention before when they had to miss three days consecutive of school to support their mom, who has polio. And so they got detention for it, and they even shared the school knew it. And so my answer is, my challenge is, and I'm probably a little harder on school, because I'm like, school is a protective factor. Like, if can when kids go to school, that's another support, it's another line of sight. And I know that we put a lot of pressure on the schools to do a lot of things in child rearing, like, we just call that for what it is. But if we want our children to stay in school, they gotta, we have to. We got to meet them where they're at and not just expect them to get there. So we got to know what's going on at home. So I think those are things. How do we have policies on on the through the school, through Department of Education, but how do we have policies across the board, on a federal, state and local level to support our caregiving youth?

Todd: 11:38

Yeah, yeah, yeah. You know, I'm thinking of all the people that were involved in our program, all the organizations, and there's just some, really, they're all special. I mean, they're all special in what they're doing. And I think I'm thinking of a couple that stand out for me for different reasons, because they all have different roles within what we are bringing forward. And I think of, I know everybody feels that the kids kicking cancer, you know, just Rabbi G and Cohen were just amazing what they're doing. And people might sit there and think, Well, how does that apply to caregiving youth? Well, big time, because it's about supporting the youth. It's about providing a system, a way of them having, you know, greater strength, self esteem, because and dealing with the challenges that they go through with depression or feeling whatever. And you know, everybody has a role in this. Absolutely. Yeah,

Unknown: 12:39

I think as I'm processing through this, and it's an interesting point that I'm might make. We are we focus right now, which I think is a beautiful thing here, on inclusivity and neurodiversity and special needs in our younger population, you know, K really, K through 12, and then into, you know, the university or college setting. And I wonder if we look at this in a similar way in terms of this, to me, neurodiversity is encompassing, all encompassing. And you know, I can imagine many of these young people are experiencing, perhaps their own special needs or their own, you know, different learning styles. And then, you know, on top of this, so I wonder how that would look if it, if it wasn't all encompassing, um, focus. No

Natalie: 13:28

good points.

JJ: 13:29

I think there's a lot of community coordination that can help these kids, though. And I say that because when I heard about what their needs were, like, some of the things that they, they just wanted to be, I say normal, but hey, I want to go out with a friend at the mall, or I want to, you know, grab a cup of hot cocoa. You know, Starbucks was one of the favorites. And when you hear that, it's, it's just like adults, though, where it's, I just want a break. Now, I can't imagine being in the eighth grade and just wanting a break or just being able to study, but I think as an adult, I'm more aware that I've got to see these kids and recognize that their burden, the weight on them, and the pressure and the just emotional and mental strain is the same as mine, and can't dismiss it. And I know a lot of them said they felt dismissed. They would help a parent go to the doctor, or they would be somewhere, be talking about it, trying to get assistance, and they were just dismissed. And I look at them the same way that again, I think about myself, Natalie, all of us that deal with someone that that we're taking care of, and that is we're the caregiver, and of everybody we probably know the most, other than that person, of what's going on. And I think we just really need to value those, those those young people, those caregiving youth, for truly what they do, and listen to them. And I think a lot of them repeated that they just wanted to be. Heard. So I think that's really important as well.

Natalie: 15:03

Yeah, voices of all ages. I think that's the important just because you're a child. I mean, how many times have we heard because we're all a touch older, you know, children are meant to be seen and not heard, and in this case, they are very much being heard, and we want them to be heard. And that was the point. I think the common takeaway kind of back away, back to what you were saying Todd about like, let's not forget that the kids are not okay, in the sense of, like, these kids, though, were connected to programs like, let's let's think about this. Why was a de what built that resilience for him school his parents in addition, but also he had a really good program, and he was able to verbalize what his needs was, because he said, I don't need mental health stuff. I don't actually, it made me feel more depressed, whereas I've got Aaliyah and Nala saying something completely different. But they're in their programming in Australia. The program's up in this week's guest with Aaliyah, another we had two alias in the series, and Nala or Samiha, excuse me, and Samiha, they've been in the program in hospice Toronto for 10 years each, like we're talking about. And this is not just a one and out type programming. And I think that's really important for people to think about, when we think about programs and a lot of service providers, we think, Oh, it's episodic, so it's going to last from this point to this point. So understanding, I think one of my big takeaways is the children are going to need longer term services than potentially traditionally anticipated to help them continue to build on the skills they've learned and practice those every day into adulthood. Yeah,

Todd: 16:46

yeah, yeah, I agree. So if we bring it back around, yeah, when we think about the US, and I love everything that's being done around the world, you mentioned the UK, the UK definitely is the bellwether. They are far and away, the bellwether and what they're doing and how they coordinate all of that. So to bring it back around, I really believe in the US. That's what we need. We need to galvanize all these disparate organizations and groups, and I'm sure there are others we don't even know of that are doing it, or they might have a little program. We need to galvanize that here in the US, because by galvanizing it, it can then become a movement. It can't become a movement by disparate organizations doing their things. It's wonderful, and I'm I love that they're doing that, and doing that will can then help move forward, getting the data that's needed, getting into the schools so that the schools can do their surveys and understand, okay, who in my school are the caregiving youth, which then can help move legislation forward as Wow. So there's, there's all these pieces, and that's, that's my takeaway, and that's my, you know, that's my call out to everybody who's watching is, you know, we got to move it together, not disparity

Unknown: 18:03

Well, I think, as a resource base I know for anyone that's listening, and those can be the younger our caregiving youth, those can be adults. Our goal is to continue this information, and I know all the podcasts are hosted on our and we have a page on confessions that is for caregiving youth. That's all of our series, but all of these great people that have participated are on there, and the links with their information are on there. And if you're an organization out there and you want us to be able to add that, let us know, I know Todd Katie, any of us want to know that so we can add it and make it a resource for other people to hopefully. Like Todd said, get all these together. Because regardless of who you are with caregiving, it's there's information out there, but it's just not in one place. And I think to give the youth that opportunity if they need help, or an adult to say, Okay, let's go here and see where that resource is. I think that's important. And so we'll make sure that we continue, first of all, that's going to be on our website, and then we'll keep that resource guide. It's going to be live. So if you have something and you want to add it on there, just drop any of us an email, and we will, you know, we'll, we'll get it on there. And also, any you know, issues I know that you might have or questions, we're all open to be contacted.

Todd: 19:23

Yeah, absolutely. And similar to what confessions is doing my care friends the same, we have over 70 groups on my care friends, and one is caregiving youth. So all of the all of the podcasts that we've been doing as a part of this series, and additional information will be within that so of course, it's a free membership for my care friends. Just sign free.

Natalie: 19:45

Free feels good.

JJ: 19:47

Exactly. Free all this information exactly. We want you to take it so well, and we encourage

Natalie: 19:53

and you know this is the thing, we'll add it to our respective sites, and if you have we'll push it out on our. Social media. And the other resource I'm going to remind folks about is the caregiver Action Network, with their 800 number. It's not 800 I don't think I'm just old, but it's the help desk number that you can go to their website, caregiver action network.org, and that they have lots they've got resources as well, but it's that help desk where you can speak to a live person that is so critical you've got, I want to make sure that we shout out all of our friends, pics health, who are focused on isolation and loneliness and really suicide prevention. They are fantastic. We love you guys. Lorenzo's house, very specific. You've also got kids kicking cancer. You've got a AYC, you've got, and then our friends abroad carers trust. We have little Dreamers. And then hospice Toronto young carers program in Canada. And then, of course, National Alliance for Caregiving, caregiving youth. And we have a host of other partners, like Elizabeth Dell Foundation. They're all on the website. So guys, I mean, if you're out there and you're doing this program, please send in your information and we're going to stay connected. I think that's that's critical that we continue to do that.

Unknown: 21:11

Yeah, for me, just a big thanks for our supporters of the program, and that would be DePaul, community resources, care forward, and then the National Alliance for Caregiving and our partners, of course, and us, our peeps, they're going

Natalie: 21:27

to change their name to my care peeps, yeah.

JJ: 21:31

But absolutely, without the partnerships that we've had, we wouldn't be able to have brought this to

Todd: 21:36

you. Yeah. Thanks to everyone and everybody. Keep in mind as well, just because this series end doesn't mean that the, you know, the mission of bringing awareness ends. This has to continue going and both confessions of elect and caregiver and my care friends will continue to push out information that keeps this in the public eye. Absolutely.

Unknown: 21:56

Yeah, I think what you said earlier, Todd, or, I can't remember who said it. It's the force that we need to move this forward in a really unique way.

Natalie: 22:05

I love it Well, guys, thanks so much for listening to our special series, caregiving youth, hidden in plain sight with our friends, my care friends and the sisters, JJ and I are super happy to have partnered with you guys. It is a lovely, lovely relationship. We appreciate you guys, and thank you for listening to our series, and we will see you next time when we confess again.

Unknown: 22:28

Thank you. Thanks.

Natalie: 22:31

Well, friends, that's a wrap for today's educational episode. Thank you for listening to our special series, caregiving youth hidden in plain sight, and don't forget to visit our website to sign up for our monthly newsletter. Sign up for the free sisterhood advantage discount club, and, of course, connect with us on Facebook, Instagram, LinkedIn, Tiktok, Twitter and Pinterest. You'll also find the video recording of all our episodes on the confessions website and our YouTube channel, we'll see you next time when we confess again. You.