[00:00:00] Speaker A: When supporting a loved one with feeding differences, it's easy to feel like you are alone at Feeding Matters. Our hope is for you to find the community resources and support that you need through our Power of Two Parent to Parent mentoring program.
Parents in need of support are matched with our one of our volunteer family coaches who have lived experience with their own child and can offer emotional support, resources and guidance to lessen the isolation that families face with Pediatric Feeding Disorder or PFD as well as avoidant Restrictive food intake disorder or arfid.
Families can request a one time phone call or a three month or six month match by filling out the request form on our website.
A family coach will make contact via email first and then by phone or text message, typically within two to three days. For more information, please contact us at 623-242-5234, extension 306 or
[email protected] you are not alone.
[00:01:14] Speaker B: May is PFD and ARFID Awareness Month and Feeding Matters will be celebrating and engaging the community with weekly themed content. We'll have expert led Instagram lives, podcasts, resources and a whole lot more. We're going to get informed, get deep, get loud and get local about Pediatric Feeding Disorder and avoidant Restrictive food intake disorder. So join us on Eating Matters on Instagram.
[00:01:43] Speaker C: Presented by Feeding Matters with host Jacqueline Peterson and Dr. Haley Estrom.
[00:01:53] Speaker D: Feeding Does Matter.
[00:01:56] Speaker E: Welcome to Feeding Does Matter. I am Jacqueline Peterson and I am with my co host Dr. Haley Estrom. Haley Happy PFD and ARFID Awareness Month.
This week is Get Local Week.
[00:02:11] Speaker F: Fantastic.
[00:02:12] Speaker C: Yes.
[00:02:13] Speaker F: Hi Jacqueline, how are you doing?
[00:02:15] Speaker E: I'm doing pretty well. Today we have something that's really cool to share because we're going to be talking about our local community councils and we are joined by two council chairs. Our community councils at Feeding Matters really are focused on local outreach and kind of that get local flavor. So making sure that as we are working on some of the research things and the messaging things and supporting families that we are still trying to focus on early identification of PFD and making sure that people at the grassroots level know that when eating is hard, scary or hurts that it's not picky eating.
I am so excited to introduce you to two powerhouse council chairs.
We've got Emily Adams who is our council chair of Ohio, our Ohio Community Council.
And then we've got Stacy Payne who is our council chair of California. Emily and Stacey, thank you so much for joining us.
[00:03:17] Speaker F: Thank you for having us.
[00:03:20] Speaker E: Wonderful. Well, we at Feeding Matters struggled with how to figure out what we needed to do at a local outreach level.
We were doing a lot of just different things that aligned with our programs and initiatives, but we continue to struggle with how are we doing that local outreach.
And so that's how the idea of even community councils was born.
But it really took the vision that you both had in terms of how do we craft it and build it and evolve it based on what are the needs of the local communities themselves. And so maybe let's start by sharing a little bit about your personal and professional background and kind of even just how you found Feeding Matters before we get into the community council aspect of it. Emily, maybe we start with you because you are a board member of Feeding Matters as well as a community council chair.
[00:04:15] Speaker C: Absolutely.
So I found out about Feeding Matters way too late in the game, in my opinion. But my youngest daughter has pediatric feeding disorder, and we really struggled to find the right care for her. And we live in Northeast Ohio that is, you know, supposedly this, like, mecca for.
For medical care. And PFD wasn't a thing in Northeast Ohio back in 2019.
And so I ended up trying to find an intensive program for her.
We looked at CHOP in Philadelphia.
I looked at, you know, Boston Children's, even looked at a couple of hospitals out in California, Atlanta Children's, et cetera, had her evaluated at CHOP in Philly, and they had recommended Nationwide Children's in Columbus, Ohio, which is two hours away from us. And I was like, oh, no, no, no. They do not have the program that Morgan needs. They don't advertise or didn't at the time due to my intervention and my, like, big mama bear mouth, like, they now advertise, like, their program correctly.
[00:05:34] Speaker D: But I.
[00:05:35] Speaker C: It was through that team that I was introduced to Feeding Matters. And so after we were home and I felt like we were in a better place for Morgan's, like, therapy and her recovery.
I started a little bit of stalking of Jacqueline, trying to figure out how I could help, because Feeding Matters wasn't really a household name on the west or on the east coast like it is maybe on the West Coast. And I really wanted to be a part of.
Of that and, like, that growth. And then also just my. My drive and my passion is making sure that no other parents go through the fear and just the challenges that we did.
So, yeah, I took a board position, and now I'm this. We have an additional person who's on, like, the eastern side of the US on the board, which I'm really excited about.
But I've found over the, you know, the last handful of years that even like medical systems and even insurance and all of the things are handled a lot differently coast to coast. And so it's been a really great like pleasure to like put together the Ohio Community Council because I now feel like I have a better understanding of just the Ohio landscape, landscape north, south, east to west and everything in between.
And we have a group of 20 wonderful people who are like all kind of going for the same goal, which is to try to develop early intervention. So we've got some cool projects lined up for this year, but it's been a really nice experience.
[00:07:21] Speaker E: Thank you so much, Emily.
It's always so cool to see how parents and caregivers can take their personal experience and really apply it to changing the system for those behind them and in the future of the field in general for all families and children.
So thank you so much for everything you've done to just fine Feeding Matters and to kind of transform the way we think about it for you and for Ohio in general.
So thank you for being here today.
Now Stacy, you have a little bit of a different story. And so that's why I thought it was so cool that both of you were here to join us to share how you came to Feeding Matters and how you came to the chair position.
So would love to learn your journey.
[00:08:08] Speaker D: Yes. Thank you so much for having me. And I love to be able to hear the stories of parents and the real day to day experience experiences of living with pediatric feeding disorders.
I was first introduced to the world of pediatric feeding and swallowing disorders because I am a speech pathologist. So professionally that was an area from early in my career that I pursued. I'm a native Angeleno, there aren't very many of us. And I moved across country to Virginia for a while and worked for a children's hospital and found myself on a feeding team and, and I was a new clinician at the time, maybe a year in and didn't know that much about it. Ended up at a Suzanne Evans Morris in person three day workshop which just completely changed my perspective on what we do as SLPs, as clinicians.
And so that was in the mid-1990s.
And then at Mike, that interest in feeding and swallowing challenges in particularly in young people, although through my career I've also worked with adults, led me to be a medical based acute care SLP for most of my career. So from Virginia I worked for Children's Hospital, the King's Daughters and I was on the interdisciplinary feeding and Swallowing team and then moved back to LA in the late 90s and found myself on staff at Cedar Sinai where I was the NICU, SLP, PEDs, ICU, cleft and craniofacial team.
And always sort of shaped my lens around that unique part of my profession that manages feeding and swallowing.
So it's always been a part of my journey from very young, in my early clinical days, and it's amazing that it's been 31 years.
Interestingly, of my four children, three of them had feeding and swallowing challenges. So I lived it from a completely different perspective. My Last baby is 15, so I was well versed in feeding and swallowing. Found myself as a patient and my daughter as a patient in my own hospital.
She was a premature, she was an ex 30 weeker.
And so I went through that journey of tubes and, and transition to oral and you know, from being on the other side of conducting swallow studies, video fluoroscopic swallow studies, to then watching my child go through that, it's a very, very different experience.
And I say every, you know, every cloud has a silver lining. I think it has definitely shaped the level of compassion that I show up with as a clinical care provider in this area because I get it, it is very, very stressful.
And so I just have a really big heart for the mamas, for sure, but the whole family as they are helping their child and walking alongside them through this journey in a personal way. So that was kind of a unique experience.
About 10 years ago, I started a private practice out of this funny idea that I would have more free time than working on staff at a large hospital, but also secondarily to fill a need in the community. Because as we were referring out into the community from the acute care setting, there weren't a lot of clinicians who felt qualified to take on the long term kind of continuity of care for those kids who were being discharged from some scary situations.
So I was in a unique position to kind of fill that space and then, you know, we've grown from there. So my practice doesn't only do feeding and swallowing, but that is my love and that's my clinical hours are spent with that population because it's just a big passion of mine. I started out with Feeding Matters many years ago just out of a. I think I responded to an email that says, are you a provider and would you like to join our database? Well, yes, I would, so I signed up. But it wasn't until a few years ago. I mean, occasionally I would hop on. The resources are phenomenal with the organization and just easily accessible on the website.
I would use that provider database to refer to other people out of my area to help patients, parents find providers.
But in the last couple of years, I have been so fortunate to have joined this council. My first year just as a member and in January I became the chair for California Council.
And it is truly remarkable to have the opportunity to dialogue, to plan, to serve alongside other professionals that are not just SLPs, physicians, GI doctors, registered dietitians, SLPs, OTs.
So it's just been a real, a real blessing. Like, you know, you can feel that you're on an island sometimes doing what you do, but to be part of something larger, with faces that you get to meet with every week has been really, really exciting.
[00:13:44] Speaker E: That's so cool. Stacy, thank you so much for sharing. And I completely agree that like there is just such a, a unique journey about starting as like a professional with professional experience around feeding and then having your own personal experience as well.
I think sometimes you kind of shame yourself as a professional as you're like trying to get further into supporting your kids journey.
[00:14:11] Speaker D: Yeah.
[00:14:12] Speaker E: Hopefully we can change a lot of that shame because shame goes around for every parent. And.
And so I know that so much of what you both are doing in terms of your outreach is really making sure those resources are available, that parents know that they can find support, but that clinicians and professionals make sure that they have that partnership in Feeding Matters, in the resources as well. And so maybe share a little bit about, from each of your experiences, what awareness has looked like in your local area and how it may be changed since your council began. Because I think you both had different experiences. Emily, you founded the Ohio Community Community Council, and so you've been the chair since the start. And Stacey, it's really cool to see how, like, how it's evolved in California, where you started as a member and then evolved into the chair.
So I don't know, any thoughts maybe, Emily, on, you know, how awareness looked like in your local area and how it maybe has changed.
[00:15:09] Speaker C: So when we first got started, everybody was very much aware of arfin.
There were mixed reviews on and still are, like, you know, the difference between PFD and ARFID and how, you know, those are diagnosed.
But through all the education that we've had, either through Jacqueline or, you know, other members of Feeding Matters, that, or even like medical providers that are affiliated with Feeding Matters have done like education sessions for the team to talk a little bit more about the differences.
It's interesting and it's heartwarming for me as a non practitioner, but a parent, to see that a lot of people are starting to think differently about, you know, feeding difficulties.
They're starting to use the ICD10 code that's affiliated with PFD now, which wasn't a thing.
They're starting to have conversations with, you know, their pediatrics, like team members or even pediatricians about early intervention. We have some clinics that are now starting to use the feeding questionnaire that was so wonderfully developed by Feeding Matters.
So, like, it's definitely been an evolution. And then we've also had, you know, we're up to 20 members now, but I think we started with maybe like 8 or 10. And it was a different. A cross section between, you know, SLTs, some dietitians in like, some hospital settings either, like Northeast Ohio, northwest Ohio, central Ohio and Southern Ohio. But now we have like, some private practice people. We have some individuals who are in schools that has been like, everybody has like, a very, a very different thought or understanding or picture of how PFD works and like, how they can support families or these littles that are having challenges.
But it's really kind of cool to see that, like, the end goal is the same for everybody.
And it's been really interesting this year to really determine what we want our goals to be as like, a team through our community council.
And when we.
When we were kind of in the goal development stage, like, I never realized, you know, being a mom and I am, like, in the insurance space, so, like, I kind of understand how healthcare works and how challenging it is to navigate.
But what we decided to do was to try to pilot putting the feeding questionnaire into one of the health systems of the community council members that we have in Ohio and putting it into the medical records.
But also the. What is it? Epic, I think, is the.
The software.
So, you know, as people, like, as parents are preparing for, you know, their, like, a early childhood visit, they'll be asked questions not just about, like, autism or, you know, other types, like behavioral development and whatnot, but we'll also kind of input the questionnaire in there to really identify feeding challenges.
And everybody was really excited about that project.
So, yeah, I'm really excited to get it going. And it was all developed from, you know, a mind of a mom, a mind of someone who's in schools, you know, someone who's like, in inpatient therapy, outpatient therapy, intensive therapy, like, the need was unanimous.
So that's been really fun to see how all of that grow.
[00:19:28] Speaker E: Oh, I love that. And that's such a great goal in terms of a tangible awareness and outreach thing to pilot. How has it been, like, in trying to navigate, like, how do you identify a goal as a council?
[00:19:41] Speaker C: I'd say that that's kind of hard for me. I don't know about you, cece, but, like, it's difficult to find time where, like, everybody can always get together and especially if they're, you know, practicing.
You've got kids to see. Right. You've got families to help.
So, you know, that. That is a little bit difficult. But sometimes we just use emails as a way to just kind of update everybody on what our ideas are and to see if we can, you know, get consensus.
But it's challenging.
[00:20:14] Speaker D: Yeah, I'll jump in too. Yes. I think that was one of the things that probably took the most time was really honing in on what, as a group, we wanted to accomplish. And, you know, there were so many phenomenal ideas that it was hard for us to narrow down. Like, we had four really lofty goals, and then we had to narrow it down a little bit. But it sounds like similar to what Emily and Ohio Council is doing. Our two biggest that we narrowed down as the key pieces was early identification and building that early intervention relationships with referrers, with early identification. So our pediatricians, DI, doctors, ENTs, nurses, regional centers in California, we have regional centers that provide funding for children in the state of California. Help to cover. Helping to cover, like birth to three therapy services and beyond.
But that was one of our big goals. Another was educational resource dissemination. And that's where fantastic things that Feeding Matters has so easily accessible are the rack cards. So a lot of our members have been meeting with pediatricians and other care providers, daycares, regional centers, service coordinators, and providing those rack cards to get into the hands of those key stakeholders, whether those are clinical professionals, parents, daycare providers.
And I think that idea for us is that it has to start with awareness.
It's got to start with awareness and education. And the earlier we can intervene, the better the outcomes. Like with anything, and particularly with feeding challenges and arfid. Um, and so we felt that those were our best ways, would be the most impactful ways to really impact our community at large is to each of us.
We have a. We have a charge. Each of us has to touch five stakeholders by a certain quarter. By Q4, Q3. Each of us has to disseminate four targeted resources, educational resources. By Q5 or Q4. I'm sorry, Q5. Yeah. That's how My mind works.
[00:22:47] Speaker E: That's how it feels sometimes. Honestly.
[00:22:51] Speaker D: Just feels like I need one more quarter to get help.
[00:22:54] Speaker E: Catch up.
[00:22:55] Speaker D: Quarter. We do. We do.
But, yeah. So we've identified timelines and we use.
We have such great support from feeding matters between Jen and Carrie that just kind of tie everything together. We meet every four to six weeks on a call, and our numbers have grown. Like, I, I, I think we're getting close to 20. That, that would be amazing. I think we're around 15 now.
[00:23:24] Speaker E: But where did you all start?
[00:23:27] Speaker D: I think there were about six. And then on the call, maybe there were like, the few four of us that would, you know, people, it's hard. So we've got a meeting. Someone's got a, you know, a client to see. It's hard.
Back to school night. So we really kind of all voted on best times to meet and the best modality. For us, it's a phone call and it's just really grown. And I think once movement starts to happen in the council, it's easier to get kind of pumped about it, and it keeps that momentum going when you've got, like, your teeth dug into something and everyone's invested and you see your council member, like, because we, we will post, hey, I did this this week. You know, therapists are a little bit competitive, at least I'll say SLPs are.
And we're like, oh, yeah, that's right. I got to get those rack cards out. But I think we serve to, like, encourage each other that, like, there's a little bit of healthy competition. I think, at least for me, maybe I'm the only weirdo that, like, gets, like, motivated by seeing other people. Like, oh, yeah.
[00:24:34] Speaker E: I think Emily's competitive too.
[00:24:37] Speaker D: I bet.
Yeah.
[00:24:39] Speaker F: What do you see, Stacy? Animalie, too, as some of the.
[00:24:45] Speaker C: Some.
[00:24:45] Speaker F: Of the greater challenges or opportunities that you've encountered in raising awareness?
[00:24:54] Speaker D: You know, I don't know that it's happened too much to us. We've been pretty successful so far getting in front of people. But I think with anything, getting a doctor's ear is hard.
You don't want to cold call and show up like a pharmaceutical rep, you know, you.
So I know for me, and it might be helpful for other practitioners that are listening. I think one of the best ways to start that conversation is really to build relationship.
And I think as providers, we want to do that anyway. You want to build relationship with the family, but also those referring physicians or whomever is referring to you. I make it a point of always when I do a Feeding evaluation. The first person I'm calling is the physician refer.
Thank you so much. This is what I found. So and so is a lovely family. What a great baby. Thank you so much. I'm excited to be a part of the team sending you my report. And then you follow up and you keep making contact. Hey, I just want you to know we transitioned to, you know, 80% oral fees. This is remarkable. We're so excited. You need to know this.
That kind of one person at a time relationship I think opens that door because you're building trust.
And whether you're working with a family, with a child, the grandparent, the nanny, the doctor, it's all built on trust and relationship.
So I think a lot of our folks are kind of used to moving in that space on our council, so they've been able to call up, you know, people that they know that they work with on a day to day and say, let me just tell you about this.
One of the things that I did a couple years ago, well, maybe it was about seven or eight years ago, is I did a campaign for all of the people that referred to me physicians I built, created laminated guides, things to look for at your well, baby visit. And I broke it down for speech and language and feeding and swallowing. Oral motor milestones. Okay. At the six month visit, here are some red flags. Here are some markers that you want to check on. Here's what we want to look for between 6 and 12 months. Here's what we want to do at the 18 month. Here's what we want to check at the 2 month visit so that they could keep those in the exam room and just refer to it.
But I think that dissemination of information in an easily consumable way, once you have that relationship is the easiest way to go. So I'd say tap into relationships that are already existing and then you build from there.
[00:27:41] Speaker C: Stacey, I think I want to invite you to one of our meetings to talk to everybody about some of your ideas.
I, I love that.
[00:27:49] Speaker D: Well, I would love to.
[00:27:52] Speaker C: One of our biggest challenges is.
It's a heartbreaking challenge for me actually to hear about, but I think it's very real that if we create more awareness, then we create more referrals and the system can't handle more referrals.
[00:28:11] Speaker D: That's a good point, Emily.
[00:28:13] Speaker C: I don't know what to do about that.
[00:28:15] Speaker E: You're right. It's a heartbreaking challenge because we know how important early identification and intervention is and we also know how taxed the system is and how Much education still needs to happen for those that are supporting intervention.
And so, I mean it takes all of us to do this, but that's why we try to kind of attack it at like all the different areas within the PFD alliance pillars of like, well, we'll support education in this way, we'll support research in this way, we'll support advocacy in this way.
But you're right, Emily, it's something that is a struggle. Has that been something that's come up for you all at the council level, Stacey, or do you feel like the landscape is different in California or does it feel like a, a similar.
I think in Desert of Resources?
[00:29:06] Speaker D: I think in general, yes, it has not been an immediate issue, but I know in my own professional life it absolutely is. I on a weekly basis say if there can only be two of me, I just can't. I, I can't physically treat all the children that I would like to. We've thought of creative ways to a workaround like, all right, what if we do a one on one to start and then we transition to a group run a parent group, separate zoom and then do incremental check ins because we, you know, you can't, you don't want to leave kids behind.
And whether that is right, having a professional person to physically work with the child, whether it is someone having the resources to fund that, you know, I just think when you are a helping profession, that is the heartbreaking reality is that there often exists barriers.
[00:30:15] Speaker E: Yeah. And as we talk more about the feeding developmental window and as we try to highlight that in, in relation to the best diagnostic fit for PFD and for arfid, that's where you do feel like a sense of urgency of, you know, it can't be that a one year old can sit and wait for anyone because yeah, like it's, it's too challenging. They need an intervention now.
So Emily, that's a great, A really, it's a great point to highlight because of the need, but heartbreaking at the same time. For sure, you both shared your goals for 2025 and some of the steps that you've taken to do awareness.
And part of what we wanted to feature in this podcast was also how others may be able to think about what does it look like to bring a community council into their area. And that's something that we are at feeding Matters open to anyone who has that drive and that interest and that ability.
I think for some it may feel intimidating because you both are talking about like getting into an EMR or, you know, driving goals for 20 different people to reach, you know, that compounded by five reach outs per quarter. What advice do you think you would give someone as they're thinking about what does it look like to do something adjacent or slightly similar in their area?
I don't know if anyone has an.
[00:31:45] Speaker C: Idea to start first. I can start just by saying, like it's. Yeah, it's not intimidating. I think if, you know, if you have even a small group of people who are committed and thoughtful and intentional and really want to make a difference in this space, that's all you need to get started. I originally went into this, like to ask people that were only like working in health care systems, but have since realized that it's really helpful to have the perspective of someone who works in school, schools, both public and private, someone who works in private practice. We did have someone who was at Ohio University, who was on the crew for a while and that was really nice. So to have a, like someone in education who's, you know, rearing up a whole group of new SLPs to come in in the next couple of years, that was also really good perspective.
And then, you know, Feeding Matters really handles the rest. Like Jen Lambert and Carrie, they, you know, really help keep us organized on task.
There's not much of an administrative lift at all. I think the hardest part is just aggregating a couple of people who are passionate about it and then, you know, it kind of takes off from there.
[00:33:06] Speaker D: Yeah, I agree. Emily. Feeding Matters, Jen Lambert and Carrie, I mean, they're like angels.
All of the back end is pretty much taken care of. I met a really great provider at the Feeding Matters conference in Phoenix a couple months ago. And she was saying, well, you know, I'm in a rural part of my community and what, you know, we're emailing back and forth and what could I do? And it was so nice to just brainstorm. Even if you're not ready to start a council formally, one of the things I suggest to her is get a group of parents together, have a support group, host it at your practice, host it at a coffee shop, put the feelers out, put up a flyer in the local library or at the market, any community board parks, you know, my gym, you know, any place where there are kids, believe me, there's going to be somebody who is struggling through this situation. And a lot of times not even knowing that it's a thing that can be helped, definitely improved that anybody even cares.
And so just talking about it and sharing and providing a Safe space is sometimes all that you need to get, you know, folks together with a common purpose and it will grow, but just simple things like that.
And then, of course, if you. There is. On Feeding Matters website, there is a very handy little button that you can click if you want to start a community council in your area and you will get help, you do not have to do it alone if you're. If you're motivated in that way to start it. And I just think that's how we're going to make change, is in individual communities, one family at a time, one provider at a time.
So it sounds daunting, but it's really not. Just takes a couple of folks.
[00:35:03] Speaker E: Yeah. And you can start small. And you both said that you started at one number and it grew from there. And it's not like you have these goals right away.
It was about finding your footing and what worked for you as a council.
And that's, I think, where Jen. So Jen is our Senior Director of Community Engagement and she does oversee all of our community councils and our growth in that way. And it's been great to hear you both say how valuable she is because she's so valuable on the team in so many ways.
But that's also what can be helpful from her perspective in working with you all, is she can give you ideas and ways for it to be just small and not a lift until there's enough capacity to grow it bigger.
And it doesn't have to be look one way. You know, we originally, when we were starting thinking about community council as a model, we were like, oh, you know, maybe this is what they do and this is like their prescription. And then as we worked with Emily and then as California kind of grew and involved, we were like, oh, these are very different, but both very successful.
But in a way, you have the same goals too. So it's really interesting to see how you both have navigated it differently, with similar visions, but the execution looks a little bit different, which makes sense for the people involved, where you're at and what your needs are.
[00:36:22] Speaker D: Yeah.
[00:36:23] Speaker F: Well, it's a good way to see how Feeding Matters is so excellent at engaging with community members.
[00:36:32] Speaker D: Yeah.
[00:36:32] Speaker F: I mean, we see it with the consortium, but also seeing it with the community councils.
[00:36:38] Speaker E: Well, that's what I love about the community councils, because I feel like Feeding Matters is good about, like, digital first community and we try to build community in these, like, special spaces. But I feel like you all are the ones boots on the ground, building community in, like, local spots.
[00:36:52] Speaker D: Yeah. And it Feels good. It feels really good. Everybody on the council has a unique perspective, you know, and a unique viewpoint, and I think we all grow from that and enhance the movement.
You know, it accelerates it. So it's been a really rewarding experience.
I will say that I would encourage anybody who's thinking about it to just try it out.
You will be supported.
[00:37:19] Speaker F: Stacy, can you say a little bit more about what you've gained personally from this experience, about.
From being the leader of.
[00:37:28] Speaker D: Yeah, and it's only.
Yeah, yeah.
[00:37:31] Speaker E: It's only been a few months since I'm a newbie. Newbie chair.
[00:37:36] Speaker D: Yeah, newbie chair.
I. I kind of was running the other way. When they're like, hey, we're looking for a new chair. I was like, oh, not me, because I just feel overwhelmed with the pra. You know, I've got a practice and I've. I've got, you know, like, we all do. I've got stuff.
And Jen Lambert was so gentle and reassuring, and she did not tell a lie. I am so supported.
And, you know, it's a couple hours a month, really, is the commitment. Couple hours a month.
And I think what I've really gained is that sense of community, selfishly, as a provider, per my personal gains, is a sense that I am working towards something, working on my own purpose, but that I have a whole other community of people who are doing the same thing, whether they are at a children's hospital or they're at a school, or they're a BCBA or an SLP or an OT or a dietitian, a GI doctor. We're all working with a common goal. And I think that they're. On those days where you feel depleted.
That is very inspiring. And I always leave our meetings just feeling a renewed sense of energy that I think, you know, and it's the. We're meeting every four to six weeks. I need that, you know, for a month, six weeks. I start to, like, get in my, like, burnout. Like, I'm so exhausted.
And then I get to meet with my group of the council and I get energized again. So from a personal perspective, that and therapy ideas, too. I mean, whenever you're talking to someone with a different perspective, I always learn something like, oh, yes, I need to bring that into my practice. Or I never thought of it that way. Unique perspective. And I think it broadens my professional lens a little bit.
[00:39:44] Speaker F: How about you, Emily? Less of a newbie.
[00:39:47] Speaker C: Right? I mean, it's just been so rewarding. I mean, there's been like, ebbs and flows, right? Like, because they're all volunteers. So, you know, having.
Just trying to meet everybody where they are and take as much or as little as anybody is able to give sometimes that's, you know, a good reminder, you know, that we're just all here trying to do the best that we can. But it's been really nice to see the growth. And, you know, people, if they don't. If they're not able to join a call or something, they may just email us and say, like, hey, this is this happened. Or, you know, I have exciting news to share this big development, like, small development. But sometimes small things are big things. And, you know, we do a lot of, like, story sharing and whatnot. So I think it's just. It's been an awesome experience, and I'm really grateful for the opportunity to be a part of it.
[00:40:49] Speaker F: Well, I think we're coming around to our last question, so I'll go ahead and pose that to you all.
I think we can go ahead and just bounce it right back to Emily. First, what do you see as some of the biggest challenges in making PFD research more inclusive of family perspectives, and how do you think we can overcome them?
[00:41:13] Speaker C: This is something that I wrestle with all of the time.
And I'll give you just a personal lens. When I was in Columbus with Morgan during her intensive feeding program, I was constantly challenging the team with, well, have you thought about this? Have you thought about that? Like, have you talked to parents? More like, whatever. Nope. I think that they're not right, wrong, or indifferent. I mean, they're just trying to focus on making a child better and come out stronger at the end of the eight or 12 weeks than they were when they entered.
But it's hard. Like, it just. I see how busy the practitioners are. You know, they're stretched thinner and thinner. The metrics that they need to meet are higher and higher every year. Like, to sit down and really talk to a parent and get a parent's perspective. I think the system isn't allowing for that. I don't know how to change that unless these healthcare systems just decided they want to make less money.
I wish I had a crystal ball or magic wand for that, for sure.
But I do think, like I mentioned earlier, that small things can be big things. And I was invited to be a part of.
Gosh, what's it called?
They're like these quarterly calls with all different types of practitioners, but to give, like, a parent's perspective on Echo.
Echo.
[00:42:47] Speaker E: Oh, the project Echo. Yeah. Good.
[00:42:49] Speaker C: Okay, thank you. Sorry.
But they, my feeding team did invite me to be a part of each of those that they do and I, I consider that to be a big win.
And they'll always ask like Emily, what do you think? Like what are we missing from a parent's perspective or what, what else should we be thinking about?
[00:43:10] Speaker F: And it's, it's a feeding team project Echo specifically.
[00:43:16] Speaker C: Yeah. So we'll have practitioners from all over the US and actually in Canada too, which is kind of cool. And they'll come to the Echo feeding team or the call with a challenging patient situation.
So they're basically like searching for additional advice or ideas and it's been really kind of cool to be a part of that. So I wish that was available to more parents, but I don't know, that's just really a difficult question to answer because the other thing is you have families of all socio economic statuses as well. So I mean, goodness gracious, like social work I think is really important to be involved in all of these types of situations. It can't be a one size fits all approach, which I guess is very my long winded guidance.
[00:44:13] Speaker F: I think it's not an easy question to answer. That's why we, we keep asking it on repeat every time.
[00:44:23] Speaker D: Stacy?
Yes, Emily. I love what you said and I think at the heart of, or I think one of the things that does make it challenging and it's a really difficult question to answer.
But every child is unique and every family is unique to your point. And everyone's situation is a little bit different.
Everyone's ability to follow a therapeutic home program is a little bit different.
Not better, not worse, just different.
And I think when we're researching strategies or techniques or best practices or evidence based, there's a lot of variables there aren't there, that can really skew the success of a particular method or approach.
And being a practitioner in a private practice and not part of a research institution, you know, I tend to think one family at a time and I try to come up with some processes that over the years seem to resonate with most people.
But you know, depending on the community, there's just an awful lot to consider.
One of the things that I really pulled away from the conference that we had, the Feeding Matters conference, was thinking about and in my own work being more intentional about the possibility of food insecurity. I'm in an urban area in la. We see a vast range of families, some with a lot and some with very little means.
And so when we even think about things like expanding the diet, well, maybe that is not available to some families.
And so, you know, when you think about research, really including parent questionnaires, which from the family perspective, which I know Dr. Estrom is very much involved with in those family and parent dynamic questionnaires, because with any therapy, I feel like even for speech and language, the hardest part is the generalization phase. We don't want kids doing things in clinic or in practice with the professional. And then we can't replicate that in the home, because that's where it matters. That's the end goal is in daily life.
So really incorporating, you know, at our. At our. At my practice, we do have parents always in feeding and swallowing sessions. And as much as we can, any therapy that we're doing, we want them right there because we want. Our job is not to be the hero. Our job is to teach the parent to be the hero, to give the parent the tools to be the hero in their own child's life. So it's always about passing on what we know to the people who are living it out every day. Every day. Who cares if I can get the child to do something? Mommy has to, dad has to, Grandma has to.
And so I really love that idea of those parent questionnaires and outcome measures. How did this work for you? What were the barriers? What did you need? How was the communication with your provider? Do you feel like you were trained? You know, did you have the opportunity to try it out in the session to make sure you understand what it is that's being asked of you to do at home?
So it's a hard one because there's so much variability.
But even just with asking the question would be a really great start because a lot of us just sometimes don't ask the question.
[00:48:12] Speaker E: Yeah. Another way to start small.
[00:48:14] Speaker D: Yeah.
[00:48:16] Speaker E: Yeah.
Well, we are now at Time and Stacy and Emily, I really can't thank you enough.
To those of you that have been listening, thank you for joining us for this conversation. And if you do have an interest in maybe either joining up with others that have that interest of doing some grassroots outreach in your local area, please reach out to us. It may be very possible that something's already in the works.
So reach out. If you have that interest, you can find us@feeding matters.org or on any social channel. And you can always just DM us this question.
And then overall, thanks for being here and Happy PFD and ARFID Awareness Month and get Local week. So thanks, everyone for joining and we'll see you next week.
[00:49:01] Speaker D: Thank you.
[00:49:02] Speaker C: Thanks for having us.
[00:49:03] Speaker A: Thank you.
[00:49:03] Speaker E: Bye bye.
[00:49:05] Speaker B: Feeding Matters is a nonprofit organization that works with corporate sponsors to support its mission. The following sponsor ad is not an endorsement of the company, its products or services.
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