Episode Transcript
[00:00:00] Speaker A: Did you miss the live International PFD conference?
All conference sessions are now available on demand, including every presentation from the live event, plus additional on demand only sessions. And to keep the conversation going, we are hosting live Q and A sessions with conference speakers, giving you the chance to explore the topics people are still talking about. Go to feedingmatters.org conference and log in or register today and start watching before the Sessions close on April 30th.
Presented by Feed Matters with host Jacqueline
[00:00:40] Speaker B: Peterson and Dr. Haley Estrom.
[00:00:45] Speaker A: Feeding Does Matter.
[00:00:49] Speaker C: Welcome everyone to Feeding Does Matter. We are continuing with our 20th anniversary interview series. So today I am so excited to be able to talk with not only my co host, Dr. Haley Estrom. Hi Haley, how are you doing?
[00:01:05] Speaker A: I'm good.
[00:01:05] Speaker C: How are you doing today, Jacqueline? Doing well, doing well. I always love these conversations, so I'm excited to jump into it. But we've got today Dr. Betsy Clawson and Carol Elliott to talk with us today. Hi Carol and Betsy, how are you doing today?
[00:01:20] Speaker A: Great.
[00:01:21] Speaker B: Doing great.
[00:01:22] Speaker C: Awesome.
Well, before we get into our walk down memory lane is what I've been calling these 20th anniversary interviews.
Maybe let's just start with how you even tell us a little bit about yourself and then how you got into the field of specialty of feeding.
So maybe, I don't know. Carol, do you want to start?
[00:01:40] Speaker A: Well, Betsy, you start because you're. I got pulled in with you.
[00:01:44] Speaker C: Okay, there we go. Let's do that. Let's start with Betsy.
[00:01:47] Speaker B: All right. Well, I'm trying to keep this from being a long rambling story, but that's how it goes.
[00:01:52] Speaker C: So that's okay.
[00:01:55] Speaker B: I'm a pediatric psychologist and I, my initial background as a pediatric psychologist was actually in pediatric rehabilitation and I was working at a specialty long term care facility for kids.
And the kids there were really unique. They had medical concerns along with like behavioral and psychosocial. Like they just didn't fit in any other really distinctive therapeutic environment.
And so they, anyway, so they, they just kind of ended up there. And what was really, what really left a mark for me professionally was that I saw firsthand what collaborative care could do. And that was really my first introduction. That just opened my eyes to what that was all about.
And then when I was getting my first exposure to pediatric feeding problems, that just like stuck in my mind. Like the ability to maybe transform that or take that collaborative model that was working in, you know, in rehab and like apply it here.
That, that just had to happen. Like that, that was just my vision. And so when the feeding program Started in Virginia, where Carol and I started working together. And that was where we met.
You know, that was. That really became the vision was like, how do we bring all the disciplines together? And we had everybody in one department. Their things weren't fragmented.
Everyone was working together side by side with the patients and the families in real time.
And that was like. That was the vision of that program, was just to bring that whole collaborative piece, um, and make that. Make that the center point.
[00:03:51] Speaker C: Love that. And that's how you, Carol, you got involved with Betsy?
[00:03:55] Speaker A: Well, yeah, I kind of got pulled in because I got pulled in initially after, you know, some folks from Kennedy Creek or had come down to Children's and was like, you know, we wanted to start this feeding program. And then it turned into like, we need a manager. And I was like, look, I will manage this, but I don't treat feeding kids.
When I had moved down to Virginia, feeding in New Jersey at that point, even though, you know, I worked on ADLs and I worked in brain injury, it was more like the ADL piece. The hands, you know, the utensils, that kind of stuff.
[00:04:29] Speaker C: And your background.
Share with everybody your background, too.
[00:04:32] Speaker A: Oh, I'm an occupational therapist, pediatric occupational therapist.
And.
And so when I first got pulled into this, which is now 30 years ago, which is frightening to say, I was like, I don't know feeding. I don't know how to treat these kids. And so I started in as a management piece, and then sort of Betsy got brought in, and then we started developing this model and we started practicing. And then I was like, oh, well, okay, this is systematically working. And I fig, you know, I like how this is coming together.
And at that point, there really wasn't a lot of continuing education. Everybody was just floundering. And these kids were just starting to come out of the woodworks. And when Betsy and I first started, we, you know, we were in one little room with two little booths and.
And we were closing curtains and dragging videos. It was a met. Like, we transitioned to many different locations over the course of time that we worked together until we finally got actual treatment rooms.
But it was, you know, it was an exciting time because we were getting mostly kids in, pretty medically complicated kids who were tube feeding, like, picky eating. Never even got onto the treatment scene. At that point. That wasn't even a thing people went to therapy for. It was more tube weaning and progression after tube weaning. So that was sort of where we started, and that's how sort of feeding matters.
[00:06:02] Speaker C: Sort of started because that's where we entered the scene.
[00:06:05] Speaker A: Yeah, well, the mommies entered the scene. Yeah, Shannon entered the scene first.
And think about juggling three just to be three year old triplets traveled across country.
I can't remember how she heard about our program, but she did. And so she came and they came and all of them came and the support people came and they were renting a place and, and you know, during that time and I still remember celebrating the kids birthdays because their birthday fell while they were in the program and. And also pictures of them in their little cap and gowns. We did cap and gowns and they all got their certificates and they all just stood there.
But that was sort of where the brainstorm came because she was like, I want to do something like this locally. So it really was like, I want to find treatment locally. It wasn't feeding Matters, I don't think was in her head yet. She was like, I want to start a feeding program when I get that.
[00:07:02] Speaker C: Definitely what she thought of first was it was going to be a feeding program in Arizona.
[00:07:06] Speaker A: So that was, you know, I still remember her sitting on the steps outside. Betsy and I like, we're on our way out and she was like, hey you guys. You know, so we were talking to her about that and that was sort of where her. She wanted to, you know, kind of replicate what we, what we were having that was. And we're like, you want to do that while you have three twin triplets that are learning how to eat.
But yeah, and then I think Betsy after, I think Chris came after that. Right. And then we connected them. Do you remember?
[00:07:36] Speaker B: I think so. And then somehow they got connected.
[00:07:38] Speaker A: But.
[00:07:40] Speaker B: And I can't remember at what point they were just, they were really wanting to know what made the program work and like what made the pieces of it that collaborative nature, bringing all of the different disciplines together.
And then they were also really interested in the administrative side as well. And so they didn't just meet with us clinical folks to try and you know, figure out, you know, what was the, what was the magic that was going on here. But also they saw like this has to be supported from within.
And, and we're really spending a lot of time setting up meetings with our administrators and our managers and just really digging deeper into that. That side of it. And like, not just the, like how could a program like this be supported? But also like, why isn't there more of this.
[00:08:38] Speaker C: Yeah.
[00:08:39] Speaker A: In the world?
[00:08:39] Speaker B: Like, you know, like why are so many kids struggling? Why are families Having to go across the country to find good care or, you know, why isn't this just more available?
And.
And so they really spend a lot of good time, like, at all aspects of. And layers of. Of programmatic, you know, implementation.
[00:09:02] Speaker C: Can you say more about what made your model unique at the time?
[00:09:10] Speaker A: Sure.
[00:09:11] Speaker B: Well, I think it really. It's good. I mean, I think it goes back to that. That collaborative piece of it. Like, we pulled all the disciplines that typically would be functioning and were functioning in silos and. And people didn't want to. I mean, I'll just be honest. People didn't want to treat these kids.
[00:09:28] Speaker A: No.
[00:09:30] Speaker B: They would show, like, a referral would come in, and it was like, not it.
[00:09:36] Speaker C: And.
[00:09:36] Speaker B: And it was like, wait, no, like, there's a thing here. Like, we can do this.
And we, you know, pulling all the different disciplines together. And I think also what really made it work, too, from grass, from a grassroots perspective, was that we put everybody in the same department, so they were
[00:09:53] Speaker C: no longer kind of having, like, turf wars between departments within a bigger institution that we see happen a lot.
And so who was the everybody that you're saying was brought together?
[00:10:04] Speaker B: So we can actually name it Medical. It was speech, it was ot, it was nutrition, and it was psychology.
[00:10:11] Speaker A: And so social work and case management.
Nursing.
Our. Our tech, who did our food prep. Our dietitian.
Yeah, yeah. We had all, like. We had all the major, major players, which, you know, it's funny because back then, like, if you look at the definition of pfd, like, that's what we were.
We were addressing all the definitions of pfd.
[00:10:39] Speaker B: We didn't know at the time.
Literally, like, we were like, okay, well, we're just gonna figure this out, because there wasn't anything else to kind of go from child.
[00:10:50] Speaker A: We had child life, too. The kids went to child life and Therapeutic Wreck.
So during their downtime and then, you know, nursing did the medical stuff. We had our medical director.
Yeah.
Nutrition, diet, tech.
[00:11:04] Speaker C: Really.
[00:11:06] Speaker A: Yeah. OT and speech, where we had the little beach. Like, there was. They were kind of even patterned, and it kind of like Betsy depending on who wanted to come, because many people. And I think that even exists today, that a lot of therapists are scared about this, and they're like, I don't want to do that. And.
And then other therapists really want to do that. It's either a love for you or it's a no, I don't want to do that kind of thing. But, yeah, it was pretty cool. And it was, you know, we were borrowing rooms on the. On the inpatient floor that were no longer used because inpatients were like, that whole payment scale was changed. And all of a sudden we had all this availability in these rooms and they built space for us and everything. So it was really cool sort of how things unfolded, because at that point it was a very supported program because it was like the hot new thing. We were, you know, getting kids from across the country, and kids were coming in with tubes and leaving mostly off of them. And so that was. That was really great. We weren't grow. We hadn't at that point started growing the outpatient side of it, which now is the bigger side of most all of our businesses, which is interesting. But so, yeah, well.
[00:12:18] Speaker C: And I think that really led Chris and Shannon to think about feeding matters differently, because I like, like you all said that the original vision was let's create that sort of multidisciplinary, full comprehensive view and treatment institute here in Phoenix, Arizona. And that can be the place here in the west that is needed.
But I think even in pursuing. I'm just. This is a guess at this point, because I don't know this for sure from them, but that as they were talking to administration, as they were seeing how difficult it was, they were kind of realizing there are other gaps here that, like, maybe we need more to the suspensity. Do you have. If you have more to add, Totally go.
[00:12:57] Speaker B: Yeah, we are totally spot on. And I think they were just. I mean, they could speak more to this, but we're just running into a lot of barriers that they didn't really expect. And. And then that. But all of this opened their eyes to, like, how much of this was going on globally, I would say, but, you know, at that point, just within the United States and.
And as, I think also as they had started to look around the country like, okay, now where. Where else is this happening? And we were like, there were like, little pockets that's true of us all sort of having a similar vision.
Um, and. But we were not all together talking to one another, but we'd not ever met each other or been in the same room together.
And, you know, the founding mothers were wise.
[00:13:54] Speaker A: Yeah.
[00:13:55] Speaker B: Wiser than we were in so many ways. And we're like, hey, let's just get everybody.
All these. These people who are having all these great thoughts all together, and let's just make this, you know, kind of magic happen.
[00:14:11] Speaker C: That's truly what it was, was magic. They, I think, took your collaborative spirit of needing a team, and then Once they saw that across the country were like, yeah, like, let's do collaboration at a higher level and everybody take your place at the table.
So, I mean, tell me about kind of those first meetings for both of you or from your perspective. I know that there was a lot that went on you, like you said you hadn't been in the same room as some of these.
And we know it wasn't like all, like everybody got along right away, you
[00:14:43] Speaker B: know, that my honest takeaway was like, it was really inspirational in hindsight, you know, and looking back on all of it and thinking about the history of all of us over 20 years, it was really inspirational.
And you know, their vision to bring all these professionals together from different disciplines and, you know, just with that desire to make something better, we can do better.
Yeah.
[00:15:09] Speaker A: And I think, I think the interesting part was, you know, at that point there were some key players, right? And so getting everybody in and kind of seeing who was, who was a little ruffled by other people because everybody had different treatment models. You had some very behavioral models, you had some very sensory based models, very oral motor models. And, and I think the initial point, you know, when you brought all these professionals in, it was like, you know, how do we, like, how do we all come on to the same page and realize we're all here to do what's best and that.
And I still believe that there is no one way, there is no protocol for treating these kids. Like in other diagnoses there may be and, you know, like an orthopedic problem where you have a set protocol for how to do said thing when a bone is broke, making it simple. But, but I think, you know, that was another piece that kind of came up like, can we hear each other out? Can we, you know, respect each other's opinions that we may do things differently and not judge one another and figure out what we can see collaboratively, what needs to be addressed in this field
[00:16:27] Speaker C: and where can we.
[00:16:28] Speaker A: What is best for the parents and what is best for the clients. And sometimes we'll refer across one another. If I need somebody who needs more sensory time, that's not my style, but I'll send them to somebody who does more of that style. And so I think that piece has grown tremendously and being able to hear out different lectures like in the conference, and hear different presenters of all different opinions on how to treat it, but being respectful of one another is.
Is the place where we're working towards and understanding more of the definition and trying to figure out like, what's the best general treatment methods for certain tracks of kids, I guess, because everybody wants a rule book, and this kind of business isn't one. It isn't one. Every single kid I treat is different. They could have the same diagnosis. They even sometimes can eat the same sort of foods. But the family dynamic is different. The child is different. There are so many different variables that need, you know, to be considered when you're coming up with a treatment plan, you know, and so that's one of the things, you know, we talk about, like, that's why we don't do a certification, because we feel like there's nothing you can't get certified on the process, you know, so it's. It's very dynamic.
But I think where Feeding Matters is going now is. Is really trying to grow that piece.
[00:17:57] Speaker C: Yeah. And we. It's funny because we talk a lot. Even Haley and I have had conversations about.
It's hard because you have this pull between the individualization and the needs of every kid with PFD looking different than every other kid with pfd. And so then it's hard to create standardization. And so you have this, like, push and pull between these two worlds. And, like, from the very beginning, we're interested in bringing all the worlds together and figuring out where we can make movement in the right direction.
[00:18:29] Speaker B: There's an art to treating kids with pfd. I mean, you've just. You've gotta. It's just like it's having tools for your toolbox. Tools in your toolbox. And you've got to figure out which. Which ones to use at which time and when.
[00:18:42] Speaker C: Yeah.
[00:18:42] Speaker B: Where and how.
But like Carol said, I mean, no two kids are the same. Exactly the same.
[00:18:49] Speaker C: Yeah. Yeah.
Now, so you were just so at the beginning of the world of Feeding Matters, like Popsicle center before Feeding Matters.
[00:19:00] Speaker A: Yeah, Popsicle. I remember her coming up with that acronym.
[00:19:02] Speaker C: Oh, yeah. I mean, everyone's so funny that they hear about it now. If they have. Especially if they didn't know that we were Popsicle center before, they're always like, that's such a long acronym.
[00:19:13] Speaker A: I think it probably took, like, many hours of meetings before that was agreed upon. I don't. You know, like, I'm sure it went back and forth, back and forth. And what should we call it? You know, just thinking of even that PFD wasn't a diagnosis like that.
[00:19:28] Speaker C: Yeah.
[00:19:28] Speaker A: Like, Feeding Matters prompted all of that. And now it's like, oh, well, everybody knows pfd. You know, like.
[00:19:33] Speaker C: Like, everyone knows girl isn't that crazy.
[00:19:36] Speaker A: It is crazy.
[00:19:36] Speaker C: Like, that is the thing, I think, Cause luckily, like, I was there at least when PFD was coming around. I wasn't there for popsicle times. But that's been the craziest thing, is for people to just generally, like blanket accepted as like a thing.
Realizing there was like a whole world before it was a thing.
[00:19:51] Speaker B: Yeah.
[00:19:51] Speaker A: When we all sat around the table and everybody put their vote in. Well, what do you think? Should it be a disorder? Should it be, like, should it be a spectrum? Should it be. And then, you know, everybody's raising their hand, has their two cents and, you know, somebody's taking notes and trying to figure out, make sense out of all these professionals sitting around this table, trying to figure out what to name this problem.
[00:20:11] Speaker B: Yeah.
[00:20:12] Speaker A: Well, thank goodness we have that accomplished because that has helped things a lot.
[00:20:17] Speaker C: You just need big levers to pull every once in a while, and that's how we can like, catapult this field board.
What were some projects that you all worked on back in the day with Feeding Matters? Because I know we did so much deep dive work with you all. Like, there was a lot of, like, website meetings, a lot of like conference meetings. A lot of that stuff. Is, are. Are there any projects that stick out for you too?
[00:20:42] Speaker A: Yeah, well, we presented a couple different conferences.
[00:20:45] Speaker C: I definitely remember that. Yeah.
[00:20:50] Speaker A: Yeah. Cause I remember the one.
All I remember is I was up for 24 hours with the time change.
It was a long, longest day of my life.
[00:21:02] Speaker C: Oh, my gosh.
[00:21:03] Speaker A: Yeah.
[00:21:03] Speaker C: Probably because you were coming over here and we started like. Yeah.
[00:21:06] Speaker A: And to get there and all. All of that. And then I. Oh, well, I. The one conference was the first one they were putting on, gonna be putting live streaming.
That was really nerve wracking because that wasn't a thing.
[00:21:21] Speaker C: That was my first conference. Yeah.
[00:21:23] Speaker A: You know, that really was just not a thing. It wasn't like now webinars are all over the place, you know. But that was like having that camera in front and people live and you knew you were going to be broadcast across the world.
That was really stressful.
[00:21:37] Speaker C: Well, that speaks to Shannon's visionary mindset. Like, Shannon has truly always been a visionary for us. And she was the one that said Feeding Matters serves a national, international audience and they can't all make it here for this conference, so we need to bring this critical education to them. And she was like, let's figure out how to do that.
[00:21:54] Speaker A: Which year was that?
Fantastic. Like, you know, like, my schedule's busy, but I can still Participate in the conference and for a month and a half.
Watch and watch and watch and watch and watch.
[00:22:05] Speaker C: Yep.
[00:22:06] Speaker B: You just.
[00:22:06] Speaker C: You just gotta take it for. Carol's referencing that our conference is currently on demand right now. Yeah. And it is through the end of April. And yeah, it's. There's so much content in there that you almost kind of have to like, make sure you're watching it frequently or else you get like really close to the end and you realize you have too much content.
[00:22:26] Speaker A: I know. And I have to keep a list so that I can remember which ones I watch so at the end I can make like, you know, but I'm doing my feedback form. I remember all the different ones. But it's. It's great. It's great opportunity because I think it's really opened up. That's the one thing we have to thank 2024 is that it's opened up our world with that.
Which year did it start being online?
[00:22:47] Speaker C: 2015. 2015.
[00:22:49] Speaker B: Wow.
[00:22:49] Speaker C: Okay. 2015 was the first virtual live streamed conference. And then we did it again in 2017, 2019, where they were hybrid events.
[00:22:58] Speaker A: Wow.
[00:22:59] Speaker C: And then 2020 was the first time that we did an all virtual conference in January of 2020, before we all went virtual.
And. Yeah, then it's just kind of been changed ever since. But one of my most panicked memories from live streaming a conference and doing a hybrid conference was in 2017.
We went to start the conference and the Internet of the hotel went out and like full on panic.
Yeah, exactly, Betsy. And so, yeah, it's always been like a whole thing. And as you all. I mean, you all speak all the time, you know that like, the AV stuff is always the craziest thing of the nail biter.
[00:23:39] Speaker B: Every time.
[00:23:40] Speaker C: Every time. It doesn't matter how late. I mean, you all have 30 years of speaking.
It's always TV.
[00:23:48] Speaker A: Yeah, it's. That is. That is a stressful, stressful piece. Yeah. And then the one. The one conference I did, we both spoke that conference. You were with the parents, Betsy. And I was with the other therapist. It was talking about telehealth and we were telehealthing one of the therapists in. So that was cool, you know, because that was like a new thing too. Like we were. Because she was in Alaska, I think.
And you know, and I don't remember what year that was. It was. Well, it was before COVID because it was kind of a newer thing to do telehealth. And. And then of course, Covid came and everyone, you know, I was Lucky I'd already started telehealth before that, so it was not a big switchover. But then the whole world had to turn to telehealth and now it's like a very common thing. And like, Betsy does a lot of her clients with telehealth and so we are able to reach kids that we weren't able to before.
[00:24:38] Speaker C: Yeah. How have you seen telehealth change? Feeding therapy in general? I've heard mixed reviews.
[00:24:45] Speaker A: Well, Betsy, you, you, you do a lot of them right now, right?
[00:24:49] Speaker B: I do, I do a lot of telehealth, some by myself. But my, really my, my preference and I feel is maximally effective is to partner with another home based therapist. So sometimes they have an ABA person coming in the home or early intervention speech or OT is coming in the home.
And, and that just you're kind of building your own team with, with what they have locally available and that. That's really kind of cool.
[00:25:26] Speaker C: That does sound cool.
[00:25:27] Speaker A: Yeah.
[00:25:27] Speaker C: Because it's hard for the parents. Yeah. You know, Carol, that's like what I've heard from parents. I've heard some where it's been a lifesaver and then others where it's been too stressful to really make a difference. And so I love the idea of almost like a hybrid version of compiling your own team together in a way that is strengths for everybody.
[00:25:47] Speaker A: Yeah, I think it depends on sort of where the kid's out on the other end and where the parent's at too. If the parent's really stressful and they have a long history of bad meals, it makes it really hard to kind of turn that around versus, you know, it's been, it was great for some of my older, like teen and young adult. Like, they did great. And we, you know, they were able to pretty much, once we got started, do the sessions themselves. They're over there cooking their food, they're bringing it over.
[00:26:16] Speaker B: Yeah, I mean, we find ways to problem solve it. And you. And I feel like I have to be really creative to like kind of get into the child's world. Like, you know, what is this child? What is this child like? Like in terms of, you know, getting them motivated and wanting to participate and engage with the process that I feel like is maybe even more work on my part than in person.
[00:26:39] Speaker C: That would make sense.
[00:26:40] Speaker B: Yeah. Some different challenges.
[00:26:42] Speaker A: And I did find after 20, after Covid came, everybody was on Zoom burnout. Like nobody wanted telehealth. They're all like, no, we want live. And so now I feel like Some people want it, and other people still are.
[00:26:57] Speaker C: Yeah, it's very much like pendulum swings.
[00:27:00] Speaker A: Yeah. Because they all had school online, and the kids are burnout with it and. Yeah. But for people that don't have access, and it's great. You know, like, that's an option.
[00:27:11] Speaker C: You're not having to drive three hours to go see someone for 30 minutes. Yeah, yeah. There's. There's huge advantages.
Yeah.
Well, so then there's, like, lots of conference pieces that you all did with us over the years. The other thing I've been asking people about is, like, any memories that come to mind for either. Memories with Feeding Matters. Memories at the big consortium meetings where there was a lot of discussion about what we needed to do for Feeding Matters strategies, or even memories of just Chris and Shannon and their families.
[00:27:47] Speaker A: Well, I just still picture the little triplets, like, in their little. You know, we. When they were there now, we were lucky because this was a new program. Right. So people were pretty flexible. What we were able to do. So they were staying at a townhouse, and we practiced in the clinic, and then we actually went there, which now.
[00:28:05] Speaker C: Yeah, you went to.
[00:28:06] Speaker A: The administration probably wouldn't allow because we don't have a home license or something.
[00:28:11] Speaker C: Right.
[00:28:11] Speaker A: Um, but, you know, so we went there, and we're working on, you know, getting everybody organized. Like, what. How are you going to handle this when you go home? Like, where are you going to put all their chairs? And who's going to feed who? You know, and what kind of schedule can you be on? And. And then, you know, and. Well, what happens when the dog starts barking, when that tool gets cleaned? You know, so there were all these things.
[00:28:34] Speaker C: A lot of scenarios to prepare. It is.
Home is so hard.
[00:28:38] Speaker A: Yes. And so.
And we had three. Each kid had a separate therapist, so she was court. You know, we met together, but each one of us had a different kid. And.
And so that was. Made it a little bit easier, but she had to navigate talking with a different therapist for each person. And then, you know, she had a caregiver, her mom came out and stuff. But it was a lot of. It was a lot of stuff going on. And I think we only, at that point, maybe had five kids in the program. So they were three out of the
[00:29:11] Speaker C: majority of the pro. Yeah. Two thirds of the program.
[00:29:14] Speaker A: So. Yeah, so it was some crazy. It was some crazy times.
And the kids at that point, too, she was still really starting trying to search the medical piece of it, you know, trying to figure out why their stomachs were not Doing well. So that was a lot of stuff going on while we were trying to help her navigate. Navigate that and make sure the kids were well and that we were not pushing them at a point where they weren't able to handle it. You know, everybody comes in with, like, I want them off their tube, and you're like, sometimes, like, it's medically. They're not ready to. So that was another thing we were navigating with them, but luckily they all made it through and they're all graduated. Gosh.
[00:29:55] Speaker C: Do you see that?
[00:29:56] Speaker B: They.
[00:29:56] Speaker C: That. I think that picture that you're talking about of them in their cap and gowns and their graduation, that was next to their graduation photo for their college graduation.
Yes. And that's so cool.
[00:30:08] Speaker A: Yeah, I know that. Yes. So they've came so far. And. And that's a lesson to learn. Like, it feels like you're in the middle of chaos, and many people are feeling their middle chaos. But. And they are. But it does evolve over time, and it gets better when they get older. And, I mean, life is chaotic with, you know, neurotypical kids that don't have feeding problems. It's chaotic.
So add the feeding piece of it, and it makes it even, you know, more so. But, yeah.
[00:30:35] Speaker C: But, yeah, it's. Everybody reports out the chaos of Shannon's family, and honestly, it's just her energy in general. And I think that's like, what's. Like, that's what we've been able to thrive on and grow on all these these years, too.
So in terms of it being our 20th, what do you think of the next 20 years that the field needs? Or that, like, I'm gonna be retired, honey, to see. Yeah, that's fair. Completely fair.
But what are. What are you looking forward to or hope that Feeding Matters tackles in the next 20 years?
[00:31:15] Speaker A: Well, I merely hope that we can get some more programs back, honestly.
And it's. You know, right now, I think PFD is slightly getting overrun by arfid, because everybody is getting diagnosed with arfid. Like, I think it's just in everybody's. The pediatrician's just. Yeah, it's arfid. And everyone's, you know, coming with. My child has been diagnosed with arfid, and it's always like, well, let's look. Take a look closer. Look and see. So I. I don't want us to get so hung up with what's ARFID and what's pfd. Let's not lose focus on, like, the kids need therapy.
[00:31:50] Speaker C: Yeah. With the intervention.
[00:31:51] Speaker A: We need professionals who know how to do this.
We need programs where people might need more intensive than just outpatient because we could have that whole team to support families, maybe not for 12 weeks like we used to do. I don't think that's necessary. We've learned a lot over the time, but even for short periods of time to have that comprehensive care to really help people who need that. And I think it's so hard to find now.
A lot of people are going to eating disorder clinics and I don't know really what the treatments are there for these ARFID kiddos. Not to say that the ARFID kiddos aren't as worthy of treatment as our PFD kiddos, because they're all feeding problem kiddos, I think. But so hopefully we'll see.
[00:32:37] Speaker C: That's why we hope to bridge the fields between that to get like what's working in one area can be transferred to another area and have people kind of share beyond their. Their field and their scope and their discipline to really support best intervention for what. What. What the kid needs.
[00:32:53] Speaker A: Yes.
[00:32:55] Speaker C: Yeah. I. That multidisciplinary piece, it really, like you started with Betsy. It always comes back to collaboration.
[00:33:03] Speaker B: It really does.
[00:33:04] Speaker C: Always.
[00:33:05] Speaker B: And unfortunately, what is unraveling or a lot of programs and. Or barriers to making that happen, it comes down to a world that is not. The therapists are not at the.
At the center of.
So, you know, it's health administration, it's insurance, it's finances, it's. Yeah. It's the bottom line. And, and unfortunately it's. It's taking a toll, should I say, on the ability for these programs to thrive and move forward and just to really have that impact that is so needed.
[00:33:46] Speaker C: Yeah. Because if a system is working, community setting, outpatient setting works really well, but if they're overrun with long wait lists for maybe higher levels of care, the system's thrown off. And so I really hope that we can get to a place where we have a lot more qualified therapists that are in a spot with whatever levels of care that that means for the families that need them. And everybody's communicating and collaborating and ideally it's paid for. To your point of like insurance and the insurance needs, they do seem to be coming more severe. Insurance is at a dire point right now.
[00:34:25] Speaker B: I would agree.
[00:34:27] Speaker A: Yeah. And I think just getting, Getting people confidently and. And into this field, because this isn't. It's not something in many kids that can wait you, you know, not to prioritize, but if you don't have good handwriting. If you have to wait six months to work on it, you can wait six months. But if you're not eating, you can't just wait six months. And everybody has waiting lists.
[00:34:54] Speaker C: Yeah.
[00:34:54] Speaker A: And I mean, myself included, I mean I only take as many onto a waiting list so that people don't have to wait so long. But I try to send them to other places, but all the other places all have waiting lists and waiting lists, waiting list, waiting list. So it's just, you know, and I don't know if is that for every therapy, like if you just need speech therapy, is there like in all the therapies or is it, what are we seeing more of this delayed being able to get services for feeding?
Yeah. And I, I don't know if it's just less people who want to do feeding or what interest I think is
[00:35:31] Speaker C: there in the student population. It does seem like there's actually more students interested in feeding. So I'm hopeful but I think we've got some system barriers to work through in terms of insurance, that specialty education pathway, a lot of other things to get that in feeling in a good spot.
But yeah, it's a lot of wait lists everywhere.
[00:35:51] Speaker A: Yeah. And I think the other thing is because of it's such a complex treatment that it, you need experience. It's really hard to just take on, you know, kids, a 12 month old, a 2 year old, a 5 year old. And so, you know, if you're a therapist and feel confident in treating all those without experience and mentorship and guidance and so, you know, that's where it's tricky. You can't just go to a course and figure out how to put on kinesio tape. It's just, it's complicated. And you know, and I think that's the other piece that is hard and I don't have the answers to. But that's, you know, where I think it's different than other areas in our fields.
[00:36:36] Speaker C: So yeah, we always say feeding is complex and that's never gonna change.
[00:36:42] Speaker A: Yeah, I always say there's no such thing as an easy feeding kid.
[00:36:46] Speaker C: It's just incredibly complex.
But that's why in our like as we've been reflecting these this year to try to prepare for this year, we' been nice to think about how we got started and what were kind of like the core principles of what Kristen Shannon envisioned originally and what like what kind of has kept throughout the years and how we've been able to grow with getting other community members involved. But the reason We've been able to do this is because of people like both of you who were able to sit at that table, give feedback about what you were seeing on the front lines, share really important things, and brainstorm. And as a. As a partner with Shannon and Chris, who had the lived experience side. And so we're just really grateful for the foundation that you were able to lay to allow Feeding Matters to be where we are today.
[00:37:34] Speaker A: That's exciting. That's done great. Beyond expectations.
[00:37:38] Speaker C: Exceed beyond expectations. I do think it's exceeded expectations.
That's true. And hopefully we. I mean, it's funny because, you know, you kind of are, like, celebrating everything that we've done in 20 years, but you're also like, there's so much more that needs to happen everywhere. Insurance still isn't paying for it. We still have so much more that we need to do, but we'll get there.
And we have so much more of a community and so many more people aware of it that are doing this work in partnership with us or even doing this work outside of us, which is okay, too, and what's needed as well.
But thank you, Betsy. Thank you, Carol, for walking down memory lane with us.
Is there anything that I didn't ask about that you wanted to share?
[00:38:19] Speaker A: No. Thank you. Cover a lot of ground.
[00:38:22] Speaker C: We did cover a lot of ground, so I think we're good. But thank you for being on with us, and thank you for listening. We will continue with our 20th anniversary interview series, and we'll see you next week. Bye, everyone.
Bye.
[00:38:34] Speaker B: Bye.
