EPISODE 234

[INTRODUCTION]

[00:00:00] MD: Hey, everybody. It is still Pediatric Feeding Disorders Awareness Month. We are completely joyfully overwhelmed to have today's guest on. Y'all, we're hosting some of the powerhouses behind Feeding Matters. We've been continuing on our gratitude journey all year long. This episode, we are grateful for the work that Feeding Matters does, but I have a call to action. They wouldn't be able to do what they are able to do to propel acknowledgement, recognition, and support for pediatric feeding disorder forward, were it not from all of the donations that get poured in throughout the years. 

Please, as long as you're not driving, with my whole heart, I do ask that you go check out the First Bite Instagram page. In our Linktree, you're going to find a link to the Feeding Matters fundraiser. We set up a page to try to raise donations for this amazing entity. There it is, there's our call for action. Help us pay our gratitude forward by financially supporting Feeding Matters. Again, go to the First Bite Instagram page, click on the Linktree, and ta da, there it is. I think it's like the fourth one down. All right. I hope y'all enjoy. Bye.

Hi, folks, and welcome to First Bite: Fed, Fun and Functional, a speech therapy podcast sponsored by SpeechTherapyPD.com. I am your host on this nerd venture, Michelle Dawson, MS, CCC-SLP, CLC, the All-Things pedÕs SLP. I am a colleague in the trenches of home health, early intervention right there with you. I run my own private practice at Heartwood Speech Therapy here in Columbia Town, South Carolina, and I guest lecture nationwide on best practices for early intervention for the medically complex infant, toddler, and child. First Bite's mission is short and sweet, to bring light, hope, knowledge, and joy to the pediatric clinician, parent, or advocate.

[0:02:27] EF: By way of a nerdy conversation, so there's plenty of laughter too.

[0:02:31] MD: In this podcast, we cover everything from AAC to breastfeeding.

[0:02:35] EF: Ethics on how to run a private practice.

[0:02:38] MD: Pediatric dysphagia to clinical supervision.

[0:02:41] EF: And all other topics in the world of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts.

[0:02:50] MD: To break down the communication barriers so that we can access the knowledge of their fields.

[0:02:56] EF: Or as a close friend says, "To build the bridge." 

[0:03:00] MD: By bringing other professionals and experts in our field together, we hope to spark advocacy, joy, and passion for continuing to grow and advance care for our little ones.

[0:03:11] EF: Every fourth episode, I join them. I'm Erin Forward, MSP, CCC-SLP, the Yankee by way of Rochester New York transplant who actually inspired this journey. I bring a different perspective, that of a new-ish clinician with experience in early intervention, pediatric acute care and non-profit pediatric outpatient settings.

[0:03:32] MD: Sit back, relax, and watch out for all hearth's growth and enjoy this geeky gig brought to you by SpeechTherapyPD.com.

[EPISODE]

[0:03:46] MD: All right, everybody. It is Erin and I's favorite month of the year. It is Pediatric Feeding Awareness Month. And this month is personally hitting a little bit harder because I'm in a new place. And I am missing the babies and their families that I have served for the last couple years of my life. But the cat is officially out of the bag and I get to announce that I, as of July 1st will be taking over the Director of Clinical Education at James Madison University and bringing PFD to a new state, to a new university setting, and I am humbled, and in awe, and completely freaking overwhelmed, but we're going to give it to Jesus and it's going to be fine.

But that seemed like the perfect uptake for my disclosures, and to celebrate joy, because we've got to set the foundation. We have to lead by example and we have to build the next generation of pediatric feeding disorder therapists, steeped in interprofessional practice with colleagues, with OTs that we all have a seat at the table. But first and foremost, focusing on putting the caregivers first. That is why we are here today. It's to infuse caregiver empowerment and joy for what it is that we are called to serve with none other than Feeding Matters. I would love to say one more time that my camera froze on triple chins, but like, it's fine, we're going to make it.

We have an all-star lineup. We have none other than Jaclyn Pederson, who is the CEO, Chief Executive Officer of Feeding Matters. Athena Flicek. Athena, did I say your last name right?

[0:05:41] AF: Flicek. 

[0:05:42] MD: I butchered that.

[0:05:44] AF: That's fine. 

[0:05:44] MD: Yes, thank you for correcting me. Who is the programs and events manager at Feeding Matters. And Jen Lambert, who's the director of programs and events for Feeding Matters. Y'all, these women are absolutely brilliant, compassionate leaders. But they're also moms that have just been there, done that. We hold both conversations today, the vulnerability and the power and we have to respect both. Without further ado, ladies, thank you for coming on.

[0:06:22] JL: Thanks for having us, Michelle.

[0:06:23] JP: We're excited.

[0:06:24] AF: So happy to be here, Michelle.

[0:06:26] MD: This is like, I don't know. I've lost track now, third or fourth time at the rodeo maybe?

[0:06:30] JP: Yes. Something like that, Michelle.

[0:06:33] MD: Yay. Okay. Folks, for retrospective purposes, we had a couple on and we got the new ICD-10 codes for pediatric feeding disorder that came out in October 2021. We highlighted the codes then. We've talked about evolution care. We've talked about interprofessional practice with Kayla Romeo. And Jaclyn, we've had a lot going on. But in case you haven't followed Feeding Matters on Facebook or Instagram, which I highly recommend that you go do, there have been so many changes in advocacy, and so many new support systems built in. But I feel like before we go there, Jaclyn, could you maybe just kind of give us like, what were our roots and what has changed?

[0:07:20] JP: There has been so much growth and change for Feeding Matters and for PFD in general. I think, maybe I'll take it a little bit back first, just to kind of start from a history's perspective. For anyone that doesn't know who Feeding Matters is, or what we're here for, we were founded by a woman named Shannon Goldwater who had triplets who were preemies. She knew they would have medical complications, but wasn't aware or prepared for the feeding complexity that would come from this. In her journey in advocating for her children, she realized how much there needed to be an organization pulling parents and professionals together to advance the field.

Feeding Matters is a nonprofit organization. We're a 501(c)(3) that really focuses on pediatric feeding disorder. We focus on four different pillars; education, advocacy, research, and then family support, which is at the heart of our organization, making sure families are supported in their journey, families are a part of this as we're creating a new system of care for children with PFD. That's kind of a little bit about our history.

So many times we were trying to bring awareness to this condition, that's when we realized we needed to actually name it, and get diagnostic criteria, and then diagnosis for this. That's kind of how PFD originated. Then, since the publication of the new diagnostic codes, and just this amazing community taking that call for awareness and outreach about PFD, we've been able to see the conversation around feeding and pediatric feeding change. It's been amazing to see more research in this area, and a community wide network of professionals and parents excited to share about PFD with those that don't know what the condition is. From an advocacy sense, making small differences in local communities that I think we can help try to bring more awareness to. 

Feeding Matters is a national organization headquartered in Arizona, but we do feel the call to provide this information globally. For us, it's so important that we stay connected to those that are doing the work on the ground, whether it's a professional in the community setting, a professional at a hospital setting, someone in education, or a family member who is at any space in their journey for PFD. We're excited to connect with any community member. It's building that community that I think can get us where we need to go for PFD. Because, as much growth thatÕs happened over the past few years, we still have so far to go in terms of awareness.

It can sometimes feel like there's just such a mountain of change that needs to happen. But we're trying to chip away at that, and the only way we can do that is the power of our community willing to do it with us, either in partnership, or those projects that are happening even without us present. We're all pushing this forward.

[0:10:45] MD: It truly does take a village. Y'all, if you're listening right now, and you're like, "Okay. Well, this sounds great, but what can I do?" Hold tight, because even if it's as simple as picking up the phone and calling your patient's PCP or pediatrician, and saying, "Hey, have you heard about this? I think this might be actually what's going on with our patient,Ó or popping by, and dropping off your patient's report and saying, "I really don't think this is a 'behavior' or picky eating. There is more to this. Have you heard about this organization?" Then sharing the consensus paper with them, which you can find directly on Feeding Matters' website. Those little moments that you're basically already doing because it's patient care, those little moments can count and, and can spread the word. But also, there's a ton more advocacy that we have to cover too. But I want to go, Athena and Jen, can y'all talk about your roles within Feeding Matters and how y'all got pulled in?

[0:11:56] AF: Yes. I got pulled in as a parent. Ari was born with PFD in 2018. A year later, I was at my wits end not being able to feed my child, which is totally heartbreaking. Takes away all your confidence as a parent. When he was a year old, his pediatrician, in passing, just said, after I cried in her office, couldn't ask any questions. As I was walking out the room, she said, "You might want to try this website from Feeding Matters." That's what she said. I walked out of there with this thought in my mind, ÒOkay. Well, she gave me something.Ó She said, "You might want to try Feeding Matters." It took me about two months to get my confidence up. But I went online, and I'll never forget, because when you go on our website, it's like a beautiful orange, which is like a positive, that color is like happiness, social, right? Then the top two buttons say, either ÒGet help,Ó or, ÒDonate.Ó

I will never forget that image in my mind of those two buttons. I was literally clicking on ÒGet helpÓ to save my life. That's where I started. Maybe some of you don't know, you can go in there and hop for your patients, you can put zip code in, it provides lots of options of places that you can go for help to get a child, maybe a comprehensive evaluation, which is what I had for Ari done.

I paid for that out of pocket, but it's so important. That's where I first got connected with Feeding Matters is through their website, which is, honestly, for parents that are scared and don't know what they're doing. It's a safe place to start. ItÕs a website, right? No one's afraid of a website, right? I always recommend starting on our website, because it's so friendly for everyone. Professionals, and families and parents. Then after that, I got connected with Jaclyn, and our wonderful PR person, Stephanie and I did a little segment on the news, but that's where it started. Then, I happened to see a job opening a year and a half later, after I had to quit my job as a teacher because I had to bring Ari to so many therapies. I'm like, "How do teachers have a child that needs therapy like three times a week?" I couldn't grasp that. 

I get my contract. But then once we got him a little more settled in his feet in therapy, I saw this job, and I'm like, "This would be a dream job,Ó because it combined all my passions of education, during a conference for professionals, my new passion for PFD, and I just got lucky enough that I got the job. And here we are. But I always wear my parent hat first. That leads a lot of my decisions and a lot of the way, like if I work with our conference committees, and our pre-con committees, I think that hat is hard to take off sometimes. Not in a negative way, because it's really important. Feeding Matters is about family driven care, and they do put family at the forefront because it's in their foundation, it's in their DNA. That's how I got started. It's been an amazing journey.

[0:14:51] MD: Okay. Before we got on, we were talking about our authentic raw moments, talking about mom life. Eating and drinking what our kids are doing. I was bragging on how Goose has hit pre-puberty, because he smells. Hell bless his bones. He's a sweet child, but he's rather smelly right now. Thankfully, we haven't found Axe body spray. I feel like that in and of itself is going to be like a whole nother like Ð

[0:15:18] AF: An allergic reaction.

[0:15:21] MD: Oh my God, yes. But we were talking about those hidden moments that when we're living our lives, things happen and pop up, and it's like triggering. Like, for me, honestly, cheap men's cologne is a PTSD trigger from my ex-husband. I can tell, when a guy walks by, I'm like, "He's going to smell like bad cologne, and I need to plug my olfactory system." You shared your very raw moments, and do you mind recapping that ever so briefly for folks?

[0:15:51] AF: Actually, what got me to think about my triggers was, I started going to my own personal therapy two months ago now. I'm going to be honest, I didn't do it for myself. I did it for Ari. Even now when I'm in mealtimes, I have PTSD. Like, "That's never going to go away." When I was in that moment, I told myself, "You cannot go on like this. This kid's already Ð he presents in all four domains of PFD. He needs you to help guide him through this process. Your mindset, our mindset, our anxiety turns into our kid's anxiety." As a teacher, as a healthcare professional, as a parent, you can't escape. That just happens, Because I think back of what I learned in therapy, like my mother's anxiety is a nurse has affected my anxiety and what I do

That was a moment, so I didn't start for myself. Because I think sometimes, we need a reason to start and sometimes we don't think that we're maybe not deserving, but that's not the right word. But there has to be something for us. As caregivers, it's a unique tool that nurturing and helping kids takes, as a teacher, as a healthcare professional, it has a unique toll on you as a person as a professional. I think I had to have something outside myself to trigger me to start going.

My therapist was talking about how everything can be a trigger, and even like a certain smell can be a trigger for you. Of course, there's a couple of smells that come to mind. For me, for sure, I can smell Ari's vomit. That smell, especially like the newborn projectile vomit and how it saturates their clothes, and just everything smells like it. I will never forget that smell. If I'm having a bad day sometimes, having a bad experience, if a mealtime isn't going the way you want it to go, which is not how you should think of it, obviously but we all have expectations, especially as our kids grow up and do seem to be improving, I can still sometimes start smelling that smell. It's a psychological thing like, "I'm messing with you." ItÕs not what's going on.

My therapist was like, "What's a positive trigger? What brings you happiness and peace?" I was like, "The Arizona, that smell in Arizona. When you go outside, it's like a sunset smell." Then she's like, "Well, then go outside and just take a deep breath of air." I was like, "This is great to calm you down." Because your body anxiety really is like, it messes with your brain, so you need to really kind of balance and calm yourself. Yes, definitely. Yes, things like that. But being in therapy, and now I see of course that I need to get Ari in therapy as well, because PFD, one of those domains, psychosocial, really does affect Ð it's a whole-body effect, right, so we're looking at that for him now. 

It's taken me a while, but I recommend that everyone start as soon as possible because having a child that you cannot feed the way you want to, it takes away your confidence. Even if you're a positive, optimistic person, it puts you in a state of depression and we all need help. PFD affects everyone, right? Professionals, working with children, the parents, the kids themselves, the siblings, the whole family. We have to take care of all of us.

[0:18:58] MD: One, thank you for being you and sharing your true self because that takes a lot of bravery. Yes, thank you. Yes. Okay. Two, I now have an idea for the research pillar. We really should come up with an improved caregiver assessment for when we need to make professional referrals, like a screening tool for that. Because we have the SWAL-QOL, it's SWAL-QOL for adults, and it's designed to talk about quality of life for adult-based dysphasia. But imagine having a screening tool for caregivers on indicators of how this is impacting their day-to-day, and something that they can tangibly take to a counselor, or to a psychologist, or a psychiatrist to build them up. I like that idea.

[0:20:00] JP: Yes, yes. It's so important to have families at the table to be able to come to those ideas. Because, yes, we think about the psychosocial domain, but I think we're so often focused on the child in the psychosocial domain. But the connection is really what the psychosocial domain is about and how that's impacting the whole family.

[0:20:25] AF: Yes, that'd be great too, because my therapist was like, "Why hasn't anyone talked about your mental health?" Because clearly I was struggling before and people saw my moments, right? Like even when I talk to my mom about it now, she's like, "Well, I didn't know what to do.Ó Finally, once you're in therapy, things feel more comfortable to talk about, which is what we want. We want awareness and advocacy for these things. I was like, "Why didn't you ever say anything? You saw me struggling." She's like, "I just didn't know what to do or how to help you." Then of course, the therapist was like, "Well, what about your pediatrician or your own doctor? Didn't they give you anything or support you in any way?" I couldn't talk about it with them. They could see my body was not right. My emotions were everywhere. But I guess, it was hard for me to talk about. If we had that tool, just like we talked about, some of the tools that we have for Feeding Matters, that help parents communicate better with their providers. I think resources are always a great way to build confidence for parents and caregivers, definitely.

Addressing that mental health piece is hard, right? Because if you see something, how do you comfortably bring that up with Ð I guess, a healthcare professional, like an SLP. You see a parent struggling, what do you say? "Oh, I think you might need some mental health help." What does that look like? I would be like, "Oh my gosh. Wait. What? I'm not crazy." It's interesting to think about.

[0:21:49] MD: No, that's me. Yes, I bring that up in so many evals and so many therapy sessions. I go there, but I go there ever so gently. Sometimes, I mean, I'm kind of a bull in the China shop. There are the occasions when I say something, and then I have to take it back and rephrase, but that is so important. Folks, if you're listening, and you're a clinician, translate this over to Maslow's scale of hierarchical need. If a caregiver does not have those base components of that triangle, if their foundation isn't set firm, they're not going to be ready to take the next step and leap of faith, because it is a leap of faith. It is a trust fall, what we're asking them to do in feeding therapy.

If we're not building our caregivers up and if we're not holding those crucial conversations, especially around PTSD from the NICU, postpartum depression, and postpartum anxiety because they are freaking awful. If you've never experienced it, I pray you don't. Because once you do, you remember what Ð it's more than baby blues. Baby blues does not justify what those moments feel like in and of themselves, as all the women on this call are nodding their head, yes, but it is more than that.  

[0:23:12] AF: It's so true.

[0:23:13] MD: Yes, right.

[0:23:15] AF: I was in my master bedroom for eight months. Thinking about that, it was hard for me to walk into the kitchen. Thinking back on that, and my friend probably was like, ÒYou have to leave your room.Ó I was like, "I can't leave this room. This is my Ð" It wasn't even my safety zone because this is where my kid had traumatic feeding experiences. But somehow, I couldn't leave that space. But yes, professionals. If someone had told me, and the person who did finally tell me was my child's feeding therapist. She literally changed everything for me for the better. Everyone should have those difficult, courageous conversations, 100%.

[0:23:53] MD: I think you just made my brain light on fire on another idea, and IÕve got a bunch of notes that I wrote down, so we'll just put that right over there. Oh, good Lord, this is lovely. Okay, Jen. How are you and your tiny tot eating all the chicken parmesan cutlets?

[0:24:08] JL: Oh my gosh. Athena, I wish you didn't go before me. 

[0:24:16] AF: Jen, you have a great story.

[0:24:22] JL: Yes. We're doing really well. Just a little background on me. I came to Feeding Matters because I have worked in the nonprofit sector now, jeez, twelve years. That's where my heart is, that's where I feel so fulfilled. I went to school for dietetics, and then I got my master's in early childhood education. When this position came up, I was like, "Oh my goodness. This really blends both of my loves." It just felt like this needed to happen. I needed to work for Feeding Matters. I now have been with the organization going on six years, and what I love is its ever changing, right? There's always something new happening. There's always new strides that we're making. It's exciting work. I really feel like we all, not just our internal team, but our greater community, we're all making such a huge difference. It's just something to be so proud of.

But personally, I've had an experience recently, I have an eight-month-old son. When he was born, he had difficulty with breathing and also feeding. So he was in the NICU for a little while. Man, those nine days felt like the longest days of my husband and my life. It felt like we were in there for months. It's so interesting, because I'm listening to Athena and I can relate so much to everything she's saying. Because when you're in it, it's like you don't think about yourself. You're just like, "Okay. We need to get him to this certain level. We need to get him evaluations. We need to bring him home and get him settled." It's really been now, eight months later, that I'm pulled out a bit more, and he's doing really well, that I'm able to say, "Wow, I was not okay." I'm probably still not doing okay. It's been such a lightbulb moment for me, and I think for my husband as well. 

What I was telling you, Michelle, before is that he had difficulties with feeding and then we were constantly watching his weight, which can be a slippery slope, and weighing him all the time, and each day saying, "Oh my gosh. What does this log look like and what do these feedings look like? Is he getting enough? Are we positioning him right with feeding?Ó We had months of that. But now, we're at the point where the other night I made chicken parm, and he had like three fourths of a cutlet, and he's so happy and mealtimes are pleasant. We're all sitting around the table, and it's so amazing to see how far he's come. But yes, there's moments where I'm still feeling triggered, for sure.

The conference, there were a few sessions where, oh man, those were tough to sit through. But I'm so fortunate to have the support of not only this internal team, but the community. When he was going through that, I was getting texts from our community saying, "How can I help? If you need to talk, I'm here. I'm going to get emotional. But my gosh, that just speaks volumes, and is really a testament to this very special group of individuals in this community.

[0:27:44] MD: The amount of love and support that we can find here is profound. I am humbled when I sit back and look at the leaders that y'all have pulled on board in so many different facets, because it's individuals that are there for the right reasons, right? They're there to support and they give their full hearts. That's honestly, sometimes women play mean, so it's really cool to see that. It's compassion.

[0:28:27] JP: I think that's been something that's been since the very beginning of Feeding Matters, has been, everybody may be coming at this from a different perspective, a different angle, but where can we find common ground? Where can we agree? Where can we have empathy, understanding, and compassion for whoever else is at the table? There are so many areas where that needs to happen, versus finger pointing, and turf wars, and those different things. I think that's what's made this community feel so kind, because it's accurate, and it's authentic.

[0:29:02] AF: It was so interesting when I Ð I knew nothing about the feeding world, right? Like, nothing. Then I came in, and had this conference, and heard about like, there's politics, right? You don't think about that as a parent. I'm like, "Politics when it comes to feeding?" Not politics, but different opinions, right? 

[0:29:17] MD: Yeah, politics.

[0:29:17] AF: And ideas of what's best. I was like, "Oh my gosh, people are very Ð I was like, "Oh no." I was biting my nails." "What if IÕm doing something wrong?" You need to feed the child. That's all we're all trying to do. I'm trying to do the best way for each child. Every child is different. What works for my son is not going to work for somebody else, right? I learned all about tube feeding. That was just a new thing I learned about. I was like, "This is so interesting,Ó that whole world. It's just been Ð just joining the community, I think if anything, there's so much knowledge, and like our community, and our volunteers, that that is like a huge draw, just to come in and see, have conversations, and you're going to learn something new, which is going to be helpful, which is the best. I am a teacher, so I love learning and I get really excited about it. But it's true, Feeding Matters is like a school. A school for PFD. Come to school, everyone.

[0:30:13] MD: Oh my God. You remind me of Ms. Bucky, my favorite seventh grade biology teacher, she was a former Dallas cheerleader, when you did that. Ms. Bucky, if you're listening, I never flung the frog eggs across the room, that was Shawn, but I still love you. It was frog dissection day and he put his spoon in and he flung it, but he was my lab partner. I grabbed the spoon from him and yes, I got ISS and he did not, but I loved Ms. Bucky. Yes. Okay. Oh my goodness. Where do y'all want to start? Do you want to start with PFD Awareness Month and what's going on now?

[0:31:01] JP: I'm happy to start and then Jen is doing so much with awareness month, so maybe she can take it from me, and just kind of share everything that we've got for this month. But awareness of PFD is pivotal to open the doors for everything else that we want to happen. We have a slated advocacy agenda of things that we want to happen that may not happen for 10 to 15 years. Things like PFD being an automatic qualifier for early intervention. Set aside monies for research specific to PFD, inclusive insurance coverage for PFD, automatic screening, best practices established, a specialty pathway for PFD. There are so many things that may take 10 to 15 years to get. But we always look at things as like, ÒHow do we start?Ó And to start, we need awareness of PFD.

Our goal through 2026 is, let's make PFD a household name so it's not just this well-kept secret among feeding therapists in the Feeding Matters community. But other professionals that are aware of this, parents even before they become parents are aware of it. That's what led to the creation of PFD Awareness Month. 

Five years ago, we kind of started with one state, it was just Arizona, where we're headquartered, declared PFD Awareness Month. Then, since then, we've been able to grow and really build a movement behind it. This year, I think is going to be the best one yet. So, Jen, I mean, you've done amazing things with us this year.

[0:32:37] JL: So excited, not only that it's our fifth year, but just the momentum, and this happened before this month even started. I was feeling it weeks ago. I don't know about the both of you. And you, Michelle too, you're probably feeling it as well. But there's just so much excitement. I want to start off by saying that we really could not be doing this without our volunteers. Just to give you an idea of what our volunteers are doing. A few weeks ago, I sent out to our volunteer group, I said, ÒListen, we want to submit proclamation applications to deem May as PFD Awareness Month in every single state. Reach for the stars. That is our goal.Ó I am not kidding. Within that day, I had about 15 volunteers say, "I'm in. I'm in.IÕm in." I mean, that was so exciting to see.

This year, we had over 20 different volunteers. Okay, so 20 different volunteers across the US, and we had a few international that said, "We want to help too," which was so cool. We had over 20 volunteers submit over 33 proclamation applications. That is the largest we've ever seen. As of now, we have 12, IÕm thinking almost 13 states that have approved this, which is our largest yet. But not only that, we're seeing an uptick in how many people are engaging in social media, how many people are visiting our website, interacting on our PFD alliance app. We're really excited because this year, we have launched a new fundraising campaign, and that's taking place at our November virtual community event, which I know many listeners here have been a part of and we're calling it, Call it PFD Feed the Cause.

[0:34:29] MD: Jen, I'm petting you off. People, Erin and I created a First Bite feed Ð say it again. I just got excited and my ADHD kicked in.

[0:34:38] JL: Call it PFD Feed the Cause.

[0:34:40] MD: Yes, we created a page. Love us with your love money. That's what my grandma calls her money leftover at the end of a budget. SheÕd call it love money, or if she was in a pissy mood, she call it mad money. Mad money normally went for ice cream. So don't spend your mad money, but spend your love money. Then, donate to Erin and I's First Bite Feed the Cause page.

[0:35:00] JL: Michelle, thank you for that plug. Yes, we all know how much work needs to be done in the field. After conference, which just happened, we feel this even more, like 10 times more. Because our list of ideas continues to grow, but we know that we can't sustain ourselves as an organization without the support of all of you. We want to change the field, we're asking for community support. If you are willing and would like to, you can create your own fundraising page or you can donate to Feeding Matters.

Not only are we raising funds through this campaign, that's called, Call it PFD Feed the Cause. But we're also hearing from each individual person who creates a fundraising story about their why. When you create your page, you can put down, "What is your why?" It really shows how PFD impacts everyone differently, right? You heard from Athena and I how it impacted us differently. Then, you really get to see that through these pages and through that campaign.

Really, so many exciting things going on this month. We're asking you all to engage in our social media, share posts, create your own posts, and you can do that with some of the images and graphics that we have on our website. Talk to each other on our PFD Alliance app. Go talk to a pediatrician, share the word about PFD. I mean, there's so many different ways. As Jaclyn and Michelle talked about earlier, it can be something as small as sharing a post or it can be, ÒI want to plan this presentation or present at this conference.Ó Any way you can do it, please spread the word, raise awareness.

[0:36:44] MD: Folks, if you're a member of ASHA Special Interest Group 13, on May 2nd, I did a link directly to, so you'll see it back in there, on there's an entire Call it PFD, Pediatric Feeding Disorder Awareness page where it has a lot of new hyperlinks on the website. I shared it to the SIG 13. It's right there even within the ASHA SIG 13 chat forum. Oftentimes, you'll see a lot of the great leaders and volunteers that are part of Feeding Matters will post new research articles that relate to it. They'll have hyperlinks back over to Feeding Matters. You'll see that this volunteer and advocacy work directly impacts dysphagia, because I feel like that's still a myth that people think that pediatric dysphagia is not necessarily a component of pediatric feeding disorder, when absolutely intimately is intertwined into that medical diagnosis. Or the medical diagnosis, this is one of the four components. There's that.

[0:37:55] JP: It's a perfect example of a great opportunity to share PFD and provide that outreach. I think that's exactly what we're looking for, is how can we share? And there's so many different ways to share. But that's a great one. For all of those SIG 13 members, you're building your community in and of itself for PFD, which is amazing to be connected to.

[0:38:16] AF: I think also, in terms of conference, because you can still register on demand. But when we were playing this year's conference, we really wanted to emphasize collaboration, and communication, because that's like a building block of awareness. It's hard to find the time to collaborate with other professionals, because youÕre always so busy with what you're doing your actual job, but it's just so important. Most of our sessions have more than one speaker, for all the reason they talk about, how they work together and how they have successful models for communicating, interdisciplinary communication, multidisciplinary care, which was one of our number one sessions this year. So watch that. It's just so important. It's like the foundation of our awareness, is just talk about it. Talk, talk, talk.

[0:39:01] JL: That's such a good point you bring up, because I think so many times, we talk about families are not alone, and we support families, which absolutely we do. But we want professionals to also know that they are not alone in this journey. We are there to support them and the conference is one of those ways to do that. But also, through volunteering with Feeding Matters, and being a part of our community is another way to support them.

[0:39:27] MD: I have to give a shout out to Ð there was one poster in one of the many breakout sessions that was on there. It was by the Dumpling Duo OT, SLP on Instagram. They were so excited I could feel them not sitting still in their chairs when they were talking. I appreciate that because I also can't sit still in a chair. But there's was a transdisciplinary approach to feeding disorders by social determinants of health. I really enjoy that they pulled in those social determinants of health piece into their presentations. If you're listening, which I mean, they probably have no idea who I am, but like, "I love you.Ó Fangirl moment over here on my end. I just thought it was great.

[0:40:18] AF: I'm going to email them and tell them you said that, Michelle.

[0:40:21] MD: Yes, it was so good. I love the enthusiasm when it's palpable, and you can feel it through.

[0:40:29] AF: Yes, you want to have more of those moments. We had 12 of those lightning talks. They were the most successful, over 300 views each, just right off the bat. It was amazing to see how people want more information. We want new information, right? We want all this research, we want it, people want it in this field, and it shows just by our response to those lightning talks.

[0:40:54] MD: Okay. I have a request. When can we do this live? Because I like that community where we're face to face. Is this a possibility in the near future, or not so near future? Can we put this in the five-year plan? Because I would love that. Is that possible?

[0:41:09] JP: Do you mean live and in-person?

[0:41:12] MD: Yes. I mean, teleconferences are great because I can be in PJS, and go for a run and listen when I'm running. But my love language is acts of service and touch. I want to touch somebody in a good way.

[0:41:26] JP: For sure. Collaboration in person is really powerful. In our strategic plan, we have that we're a digital-first organization, because we know that's the best way we're reaching our community members right now, but it doesn't take away from the collaboration and the communication that can happen in person. I think, talking to anybody that has the benefit of being able to have all the disciplines at the table knows that in-person collaboration is really important. Because of that, it will be 2025 when we have an in-person Feeding Matters Conference. We will still always have a hybrid option, just because we want to make sure that we are able to have those that can't attend, and at least try to be as equitable as possible in terms of access.

We will have another 2024 conference. I do think our in-person conferences feel different, or our online conferences feel a little bit different, there's still that community aspect but I'm excited to see what happens when we all get together again in 2025, because it will be six years since we will have been together before. 2019 was our last in-person.

[0:42:40] MD: Okay. Where, when? I need to put this on my calendar.

[0:42:45] JP: You've got Jen and Athena panicked.

[0:42:52] AF: We're non-profit, Michelle. So we need to find someone to help with that.

[0:42:57] MD: Okay. Well, I will volunteer my time. I planned enough SCSHA conventions and pulled this out. I love that. Okay. So, sometime in 2025. Please don't let it be November, because that's when ASHA is.

[0:43:10] JP: No, it will be early 2025 in Arizona.

[0:43:14] MD: Sweet. Okay. I feel like the weather will be pretty.

[0:43:19] JP: I was just about to say, perfect time to come to Arizona.

[0:43:22] MD: This is so exciting. My face hurts from smiling. That's great. Oh, I'm so happy. Oh, my goodness, yes. Okay. Wait. When does the conference on demand end, because I know that was a question that somebody asked me. I was like, "Ugh, I don't know." Because I mean, if they want to see the current conference on demand, does that conclude like May 31st or Ð?

[0:43:45] AF: Yes, to register you can go online to the Feeding Matters website and click on our wonderful conference tab. You can watch them through midnight on May 31st. Some people will be watching them through midnight. I'm always surprised every year because that would be me. I'm saying that because that would be me. I'm a procrastinator and I would be on there watching those until midnight on May 31st. Yes, there's still a whole month to watch him, 21.5 hours. That's really great for people. Or I should say, 2.15 ASHA CEUs. 

[0:44:19] MD: Yes. I have already done mine.

[0:44:22] AF: Yes, Michelle. I saw your certificate. I was so proud of you. I'm always so proud of people that finish the whole thing so quickly. I'm like, ÒMichelle!Ó I sent your certificate and I was so proud of you, like a teacher. Congratulations.

[0:44:36] MD: I was like, "I got my gold stars.Ó

[0:44:38] AF: You did, A plus.

[0:44:40] MD: Thank you. I was like, "I think this is how we unbox the house. This is how we put it together." I was fueling my unboxing rage with joy from PFD because they literally boxed our house together with Legos. I kid you not. They took some of my breakables and packed it with my son's Legos. There were a couple of complaints on my behalf after I had calmed down. But who boxes with Legos? It's been an eventful 30 days. The horror on Jaclyn's face right now.

[0:45:16] JP: That doesn't make sense to me.

[0:45:18] MD: No, and it was like Ð well, also, we do have that many Legos. It was like multiple boxes. I was just like, "This is painful." Okay, but I digress. Okay. So we survived the move, and we celebrated with a conference. What can we expect? Can we talk more specifically about how we're moving forward?

[0:45:42] JP: Yes, I think one of the exciting things about conference is the ability to get a deep dive understanding from our community about what are the actual tangible things that need to happen next? We have our 50,000-foot view, our lofty goals, but the tangibility and what people need is really important to us. So symposium, if you haven't watched conference, or are still catching up on your credits, symposium is our opportunity to brainstorm with the community on what's needed. So, we were hearing loud and clear, insurance was a very big question and need. There were a few different components within insurance that the team is taking back and kind of figuring out what our brainstorm around that is.

Of course, there's an awareness and education piece that insurance companies still need information on PFD. That may help prevent some of the appeals, denials, peer conversations that need to happen to support insurance. But there are some other, maybe more tangible ways that we can support at least especially the professional community, as they're interacting with insurance. We heard things like specific resources that need to happen, some support with how to help provide documentation about PFD, what we're using, actually, in those medical records. So, we heard, loud and clear, and hopefully, if anybody didn't get a chance to share their voice, they would be willing to share that at programs@feedingmatters.org. You're always willing to submit your feedback.

We're really trying to take that back and say, "Okay. We have resources that we share each year. We are always trying to have quality resources, but what do we need to share next, that the community needs?Ó I don't know, Athena and Jen if you have others. It just what first came to my mind.

[0:47:59] AF: I think the most interesting thing for me is that, because I get questions from our audience to send to our speakers this year. Then one that's come up the most is people asking Ð we had some successful presentations on how different fields work together. Like an MD, and RN, and RD, and SLP, and OT, a psych, they all work together on a team. What intake form do you use? Little things like that. What questions are you asking? How are you building your schedule together, so you can all meet together? Just little things like that. People are thinking about how they can themselves replicate these successful models that are really helping these kids. That's the most asked question, I think I've had so far.

[0:48:42] MD: That's hard to teach, because I had to put my professor hat on in trying to teach IPP. Also, thank you to everybody who survived this semester, and my two grad PFT classes, because we made it. But it is very important that if you're teaching a peds dysphasia class or you're teaching a pediatric feeding disorder class that you're focusing on interprofessional practice, that you actually break down the four domains of PFD, and specifically go into the scope of practice of the speech pathologist. Because there can be pushback, especially on the nutrition component. What is our scope of practice, role and responsibility within the nutrition? 

I always explain, ÒWrite down the type of food that they're consuming, how they're consuming it, the frequency, the volume. If you have any concerns, that's where you can include, ÔSLP has concerns for not meeting caloric metabolically, please refer to a registered dietitian.ÕÓ We can say that. That's within our scope of practice, but we have to go back to teaching the next generation of future clinicians. This is how we can engage in best practice and IPP.

[0:50:04] JP: One thing I was just responding to from you, Michelle was, it's been hard to change the conversation to meet the needs of those providing service. Like you have an ideal world, four domains of PFD. We need to do a really good job of how do we translate that no matter what community setting, or no matter what resources, or location someone is at? Because access to care is very different. How can we provide support so that professionals have an awareness of the other domains, and have an ability to know how to access them is really where we're spending a lot of time figuring out how do we provide a little bit more support, education, and resources?

[0:50:53] AF: It always amazes me when I go into a pediatrician, and that's not like a number one or two screen question, right? Because when you think of, like you talked about Maslow's needs, if they don't get nutrition, what's going to happen? They're not going to make it. It's like, you have to really think about. It's always surprising to me that with PFD, those domains are so interconnected that everyone should be asking about all of them, just to get an idea of where things are at. 

Then like you talked about, referring out to an RD or to where it needs to go is super important. It's an extra step, but it needs to be taken.

[0:51:27] MD: If we go back to access to care, and if we go Ð if we pull in that DEIA lens, diversity, equity, inclusivity, and accessibility. If we go through that lens, in some cultures, individuals and caregivers are not told that they can question the physician. They're not told that they can question their therapist, and they're not empowered to advocate, to utilize their preferred foods, right? 

I had a patient who was in hospice care, and his mother was brought in from Mexico when she was a very young child. There was that whole tension in South Carolina, which I'm not even going to touch with a 10-foot pole, but everybody understands what I'm talking about. 

I'm worried that this mother who only speaks Spanish and wasn't provided enough education in her own academic capabilities to then empower her child. But she was a very young, young mother. When she went in for a swallow study with the interpreter, they told her to use this white sauce, and it was an applesauce. But she didn't know what applesauce was, they didn't use applesauce, so she didn't understand what was going on. 

She said, "I have to buy this white sauce, but we don't cook that. I don't know what it is." Not even knowing how to ask the questions or feeling that she could ask those questions, or what viscosity and consistency were to change out. I know that is just one example. But then if we pull in the whole piece of rice, and where can we put in rice, or how can we cook rice so that it meets the textures? Okay, I could go off on 14 different tangents, but that is critical, that we as professionals empower within there. Yes. Yes. Sorry. Jen, that was a very big tangent. Lay it honestly. 

[0:53:52] JL: No. You know what?

[0:53:55] AF: That was a great tangent.

[0:53:57] JL: It was, it was a great tangent. It goes back to many points that you all had touched on. To the original question that you had said, Michelle, is like, ÒWhat's in store for Feeding Matters the rest of this year, post-conference? How do we continue to see ourselves growing?Ó One of the things I see is building that community-wide network that we had talked about, right? 

One of those ways is through volunteering with us. I know that sounds like, "Wait, I'm virtually doing this." However, I want to give an example. Recently, I was having a conversation with one of our clinicians that works with us and she was sharing some of her barriers and roadblocks that she currently has in her position. Feeling like there are so many children out there with PFD and not enough time and manpower to help them all. 

As much as we all wish we could take those barriers away, I'm sure many times we have thought that, we know that the system change takes time. What I was able to offer to her is first share, we're all in this together, little High School Musical plug right there. But also, second, that she may want to think about volunteering with our organization. I say that because not only does it feel good to contribute to projects and other initiatives that our organization is doing, but those feelings can help lessen that feeling that that person may have of stress, anger, anxiety in their life. 

Building those bonds with your community and others, it does counteract that social isolation that you may feel when you're in this. I think a lot of our professionals and families feel that. I plug our volunteer program because it's near and dear to my heart, but I think there are so many benefits to being a part of our volunteer program, and depending on your time commitment, you could volunteer and do these one-off projects, such as submitting a proclamation of application for PFD Awareness Month. Or you may say, "I have the time to dedicate to Feeding Matters. I want to be involved in a committee.Ó

Just so you know, it's timely that we're doing this podcast, because we have our open call for leadership happening here in a few weeks, I believe. Is it May 15th, Athena?

[0:56:21] AF: Yes. The call for leaders and call for papers for the next conference is May 15th, so exciting. 

[0:56:27] JL: Those are both larger ways to become involved to further educate our community, to further be connected with other like-minded or professionals in the field. I share that today and say, if you want to volunteer, if you want to grow as an individual, but also give back to the field, go to our website. There's a link to sign up to become a volunteer, and we'll get you onboarded as quickly as possible. I always like to, after the onboarding, have a call with each volunteer to get to know them, to see what are some special talents you may have. Because through those conversations, I have found out a lot about our volunteers. We'll get you onboarded, we'll get to know you, and then we'll place you on what makes the most sense, and meet you where you're at, and not add another thing to your plate, but make sure that this opportunity allows you the growth that you're looking for.

[0:57:23] JP: Yes, we really want it to be a win-win. Not only are you giving back to our organization, and helping us craft some of those resources in kind of the context in communication around PFD, and where we need to be diving into. But hopefully, it's giving you the opportunity to feel that community, to get your own professional development by engaging with other professionals and families. So we really feel like there's so many advantages to it. I think also to acknowledge, Michelle, your previous conversation around how culturally PFD shows up differently. I think that's always been part of the Ð even the definition of consideration was Ð we didn't want to say, ÒYou have to eating via spoon,Ó if not all cultures are using a spoon by certain age. 

We need to carry that conversation. As a team, we do the internal work, but we also hope to really think about what do we need to be sharing from a public communication standpoint to ensure equity and access is a part of every conversation as it relates to treatment for PFD. It's conversations with volunteers that help us get there, and that's why we are so appreciative to anyone willing to give up their time to support this effort.

[0:58:41] MD: The Power of Two program that you'll have is, I have to go there. That's one of my personal favorites. Folks, if you're not familiar with the Power of Two program, and I know we've talked about it in past episodes, but it is a Ð you can find it right online. To circle back around how we opened today's episode talking about trauma and support. Sometimes, caregivers don't want to tell me certain things, nor should they feel that they have to. I am a specialist, but I'm also my mommy, but I'm not a mommy of a child with PFD. The boys have had their hitches and their giddy-ups but not PFD.

But I can provide them that information, they can make a call, and then find support. Athena, what you said about, ÒTwo months later, I got on the website.Ó That's what I find, is that sometimes they just plant the seed of, ÒReach out here,Ó and, ÒSupport here.Ó Then eventually, they call back around and reach out. What I love the most is when they call back around, they go through their journey, and then come out on the other side as a PFD advocate, and then they tie up their time to be a Power of Two coach or a volunteer on another.

That to me, when we can take our most vulnerable moments, our rawest, scariest, most fearful part of ourselves, and turn it into a light for another person no matter how raw it can feel. That is how we can shine our brightest for a good cause.

[1:00:40] JL: So well said, Michelle.

[1:00:43] MD: That's all, Jesus. But there it is. Okay, final thoughts. #CallitPFD, use that on all the things. I love this hashtag. I'm still not 100% sure on how hashtags work, because it still feels like the pound sign. But do a hashtag, and post with grace. I still have a hard time processing when research is presented on a TikTok via a dance reel, because that to me just doesn't feel very becoming of our profession. But this is just my personal thing to walk through. But yes, we're getting there. Okay. Give me your final thoughts, ladies.

[1:01:30] JL: Celebrate PFD Awareness Month with us, no matter what that looks like for you. But this month, there's going to be a lot of exciting things that come out of Feeding Matters. With stories being shared, with ways to support professionals, with being able to buy merch, PFD awareness merch, our Call it PFD Feed the Cause fundraising campaign. Just so much to look forward to this month.

[1:02:01] AF: I would just say, back to where I started. How it started for me was a website. As a professional, if you feel like someone just needs a little extra something boost, just be like "Here's our Feeding Matters website." Let them get comfortable with what's on there, the ideas, the knowledge, the resources, the support. Then once we have, as parents, that confidence, it's easier for us to have those conversations and open up more about the journey that our child is going through. That's going to help everyone at the end of the day.

[1:02:28] JP: There's so much more in meeting people where they are, and that can be in terms of our volunteers, our PFD Alliance members, how community is sharing about PFD. That's how everybody is interacting with families that are on their journey no matter where they are on their journey. That's honestly how we're sharing information too. You can look and feel many different ways. But as long as we're getting that information out there, that's what's so important to me about this month. I think Jen said it best, let's celebrate. Celebrate Call it PFD.

[1:03:05] JL: Become a volunteer with us if you're interested. Remember. I'm going to add that in at the end. That's always my plug. But please come join us. Let's make this a community network even bigger than what it is.

[1:03:18] MD: I gotta say, thank you. Folks if you're listening and you've ever seen me live, you know that in the course of a live presentation, I will make you pull out your phone and then find Feeding Matters on Instagram. Thank you, Oklahoma City and the Greater State of Oklahoma, as well as Tennessee State University, and A.T. Still University, and the list goes on. But thank you, thank you. But if y'all know Erin and I, you know this is a cause that's near and dear to our hearts. Because at the end of the day, fed is fed is fed and we are only as good as we build up our caregivers. With one breath, you can complain. With the second breath, dig deep and join us. 

[OUTRO]

[1:04:08] MD: Feeding Matters guide system wide changes by uniting caregivers, professionals, and community partners under the Pediatric Feeding Disorder Alliance. What is this alliance? The alliance is an open access collaborative community focused on achieving strategic goals within three focus areas; education, advocacy, and research. So, who is the alliance? It's you. The alliance is open to any person passionate about improving care for children with a pediatric feeding disorder. To date, 187 professionals, caregivers and partners have joined the alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on the PFD Alliance tab and sign up today. Change is possible when we work together.

That's a wrap folks. Once again, thank you for listening to First Bite: Fed, Fun and Functional. I'm your humble but yet sassy host, Michelle Dawson, the All-Things PEDs SLP. This podcast is part of a course offered for continuing education through SpeechTherapyPD.com. Please, check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. As always, remember, feed your mind, feed your soul, be kind and feed those babies.

[DISCLAIMER]

[1:05:47] MD: Hey. It's Michelle Dawson here. I need to lay out my disclosure statements. If you ever wondered how bad my ADD, ADHD, and lack of sleep Monday through Monday, actually as well, here you go. These are my non-financial disclosure statements. I volunteer with Feeding Matters. I'm a former treasurer with the Council of State Association Presidents and the past president with the South Carolina Speech Language Hearing Association. I am a current member of both ASHA and SCSHA. For this year, for 2021, I volunteered for the Pediatric Feeding Disorder Planning Committee for the ASHA 2021 convention.

My financial disclosures. All right. I receive compensation for First Bite presentations, as well as Talking Teletherapy and Understanding Dysphagia from SpeechTherapyPD.com. I also receive royalties from SpeechTherapyPD.com for ongoing webinars that I have on their website, as well as compensation from PESI Incorporate for a lecture course webinar that I have on their website as well. I am coordinator for clinical education and clinical assistant professor for the Masters of Speech Language Pathology program at Francis Marion University in Florence, South Carolina, for which I receive an annual salary. I also receive royalties from the sale of my book, Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding and Swallowing Disorders, that I self-published and it's available on Amazon. I do receive royalties from the accompanying 13.5-hour CEU for the book from SpeechTherapyPD.com. So yes, I stay pretty busy, but those are my financial and non-financial disclosures. If you ever have any questions, please feel free to reach out. Thanks, y'all. Bye.

[1:07:56] EF: The views and opinions expressed in today's podcasts do not reflect the organizations associated with the speakers and are their views and opinions solely.

[END]
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