EPISODE 236

[0:00:01] MD: Okay, everybody. We have a lovely new podcast review and they made me so happy. I seriously read all of the comments that come through every single morning. I wake up and check. Not that I am a little odd, but I am. Anyways, okay. To kick off June for Dysphagia Awareness Month, we have this lovely review dated May 6th, from Carol_Nat called ÒWorth the Listen, a 5-star, a wonderful free resource for feeding therapists.Ó Carol_Nat, thank you.

Erin and I work so hard to make sure that we find clinicians that are active in the field, researchers that are advancing our field and interprofessional practice partners that help shape our practice, but also grow it with joy. Some of it is fun to listen to. Some of it is fun to learn and be a geek with. Yes, thank you. This is a free resource for feeding. But under pediatric feeding disorder, dysphagia is a component of that.

I hope that you enjoy today's super intense way over 60 minutes long interview with none other than Dr. Amy Delaney. She is a powerhouse of knowledge and kindness and y'all need to check her out. She heads up the Marquette PFD Feeding Lab on Instagram. I think I said that right, Amy, if I butchered it, IÕm so sorry. Carol_Nat, thank you for your kind words. I am grateful for you.

[INTRODUCTION]

[0:01:56] MD: 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 PFDs SLP. I am a colleague in the trenches of home health, early intervention right there with you. I run my own private practice, Heartwood Speech Therapy here in Columbia, South Carolina. I guest lecture nationwide on best practices for early intervention for the medically complex children. First BiteÕs mission is short and sweet, to bring the light, hope, knowledge and joy to the pediatric clinician, parent, or advocate.

[0:02:43] EF: By way of a nerdy conversation, so there's plenty of laughter, too.

[0:02:47] MD: In this podcast, we cover everything from AAC to breastfeeding.

[0:02:52] EF: Ethics on how to run a private practice.

[0:02:55] MD: Pediatric dysphagia to clinical supervision.

[0:02:58] 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.

[0:03:07] MD: To break down the communication barriers, so that we can access the knowledge of their fields.

[0:03:13] EF: Or, as a close friend says, ÒTo build the bridge.Ó

[0:03:16] 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.

[0:03:27] 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.

[0:03:48] MD: Sit back, relax and watch out for all her squirrels and enjoy this geeky gig brought to you by speechtherapypd.com.

[INTERVIEW]

[0:04:02] MD: All right, everybody. I am geeking out, and I know that Erin is, because we have none other than the Dr. Amy Delaney, who has written so many research articles, and is just this empowered and empowering PFD human. It's just wonderful. Amy here. Dr. Amy Delaney is the Assistant Professor in Speech Pathology and Audiology at Marquette University. She's the Director of the Neurodevelopmental Feeding and Swallowing Lab. Y'all, you can find her on the land of the Instagram at PFDÕs Feeding at Marquette Lab, or something like this. I just butchered it. I suck.

She is also a founding medical professional council member, and currently the educational pillar chair for Feeding Matters. She co-authored The Infant and Child Feeding Questionnaire, which you've heard us reference so many different times. It's the screening tool that you can find for free on Feeding Matters website, and co-authored the PFD consensus paper by Gaudet et al. in 2019, which is how we got the PFD ICD-10 codes. Also, she's a mom, a soccer coach, and has the cutest mini-Bernie Doodle that you've ever seen.

[0:05:17] EF: That's what my mom just got.

[0:05:21] MD: Yeah.

[0:05:22] EF: He's so cute.

[0:05:25] MD: Dogs that we hear like, what about me on Erin? What about me?

[0:05:28] EF: Dog, you're my third favorite dog. Don't forget it.

[0:05:31] MD: It's okay. It's okay. He still loves you. She literally stood up all pitiful like, ÒI heard Ms. Erin.Ó But she's here. Dr. Amy's here with Erin and I, so hi.

[0:05:43] AD: Hi.

[0:05:43] MD: Dr. Amy, thank you for coming on.

[0:05:47] AD: Thank you so much for having me. I'm truly honored.

[0:05:49] MD: We pitched this, and then life got in the way, and I had 4 million hiccups. We had to kick it down the road, her coming on, because my life was like [inaudible 0:06:00] and now it's back together. For the most part, just don't look in the basement, because that's not unboxed. We're covering the beginning to the end of your walk with PFD and how it's made us all better. Can you take us back to the beginning-beginning? When did you want to be a speech pathologist? Also, can we please see the Bernie Doodle when she gets up and moving?

[0:06:25] AD: Absolutely. IÕm sure she'll pop up here any moment. She's always up in my business. Gosh, how did I become an SLP? Well, it was not my first major at all. I was actually going to be a photographer. Over time, I decided that I would have to work for a newspaper, or go hunt down stories and that wasn't what I wanted to do. I started looking around and I ventured into psychology and criminal science. That was really interesting to me. I think I liked the psychology side of things, the behaviors of individuals.

I stumbled upon an intro course for communication disorders. I was taking it as an elective and fell in love. I never looked back after that. When I remember sitting in one of my undergrad neuro classes and this professor says, ÒOkay, we're going to talk about swallowing.Ó Of course, you're like, ÒOkay.Ó She shows a swallow study, and I just lost my mind. I'm like, ÒIÕm going to do that someday.Ó I did. That was at the University of Wisconsin, Milwaukee, where I received my bachelor's degree.

Then I ventured into graduate school at Marquette University. I've come full circle and I did my master's degree there. At the same time, I took a separate placement above and beyond our requirements at Children's Wisconsin, which was Children's Hospital Wisconsin at the time in Milwaukee. I stepped foot into that hospital and knew I was home. I knew I'd always wanted to do medical and I loved my placement at the VA. I loved my kids at my school placement and it all just came together when I walked into Children's.

I never looked back from there. I never planned on going for my PhD and I was always going to be a clinician, and that's what I was going to do. People come into your life that change your journey. That's certainly what happened when I was at Children's.

When I started as a CF, I had a wide range of experiences and I was exposed to autism and cleft lip and palate and cranial facial disorders and really complex medical kids. Motor speech, that was my Ð my passion was motor speech. One of my mentors at Children's at the time was Robert Beecher. Bob Beecher. Regionally for us in the Midwest was very iconic in starting feeding and swallowing work and kids that were really neuro-impaired. This was in the seventies and in the eighties. He had worked closely with Rona Alexander as well. They had done lots of lectures and CEU events over time and I was blessed to have been trained by him, ultimately, in feeding and swallowing and he trained me on swallow studies and to really understand those most complex kids. I fell in love with feeding and swallowing at that time.

We had a really small multi-disciplinary feeding team. It was really a G2 management kind of team. I was able to start working on that and really started my interprofessional experiences that were so powerful. What happened that changed my journey ultimately was Children's and the Medical College of Wisconsin decided that they wanted to grow a feeding team. They recruited Dr. Colin Rudolph, who icon in pediatric GI. He came and started what is now the interdisciplinary feeding team at Children's. His big step was to recruit Dr. Joan Arvedson. Here I have these icons in the field all around me, training and mentoring me on feeding and swallowing, but really on the complexities of children and the complexities of PFD and dysphagia and how we have to work together and understand each other's roles and experiences, so that we can really truly treat our kids to the best of our abilities.

I was just blessed to have such a wealth of interaction with these other medical professionals, dietitians, nurses, psychologists, gastroenterologists, otolaryngologists, etc. Just learned so much. Dr. Rudolph and Dr. Arvedson both encouraged me to go back for my PhD, which I just scoffed at. ÒI was never going to go for my PhD. What are you talking about?Ó I avoided research at all cost in graduate school. I started thinking about it and I reached out. My problem was that I wasn't going to move. I needed to keep my job. I wasn't in a position where I could pick up and go to school. I was married and we had a home and family was there.

I was put in touch with Dr. Ray Kent at University of Wisconsin, another icon in our field. He wrote all my phonetics books and motor speech books in undergrad. He had a T32 training grant with Suzanne Ellis Weissmart, and they brought me on. I was able to go to Wisconsin, which is about an hour and a half commute from my home. I commuted and did full-time PhD and continued working at Children's about 20-25 hours a week. That's how my journey went ultimately. It took me eight years to finish, but I also chose a large dissertation project that I did pretty much on my own for data collection.

It's because I never can do anything easily. It always has to be making it as difficult as possible. I was also determined to do a dissertation on feeding and on a project that I could take directly to the clinic. I wasn't interested in doing a project just to do a project and move on from there. I made it harder on myself, but it also was the foundation of everything that I'm doing from there forward.

[0:12:50] MD: Oh, my God. You had the dream team.

[0:12:54] AD: Well, and what's so funny is Dr. Rudolph came and we started developing clinic. At one point he said, ÒHey, Amy. I'm going to have the psychologist Dr. Elizabeth Fisher. She's going to come in. Can you show her some swallow studies and stuff?Ó I remember, this is a very long time ago. I'm going to age myself, but this was a long time ago. I said, ÒSure, but why do I need a psychologist? Why are we showing this to a psychologist?Ó This is before psychology really was a part of our team.

I sat down and Beth and I are still good friends 20 years later, and that was the first exposure to even having psychology even considered on the team. She and I ended up starting the inpatient program and we ran the very first child that was ever inpatient together. Just trial and error at that time. There was nothing out there in this capacity. But over time, we developed the outpatient clinic. We developed the interprofessional interactions and care, which was really, really complicated. It's a very complicated thing when you have five medical professionals in a room at one time talking to this child, discussing this child, making decisions about this child and this family.

There's times it came to blows. There's times where we were all on the same page, because everybody had really strong opinions. It really came from having passion about what we were doing and wanting to help the family and navigating. Navigating your own experiences, navigating what your training was, because we all came from different places and that really impacts how you move through that process.

I learned so much, which I joke with my psychologist friends and say, ÒYeah, I probably almost could have been a psychologist, because I get what you're doing,Ó or vice versa. Or I would sit next to my dietitian colleagues and just be so, so upset, because I could not crunch numbers like they were, because we had no numbers to crunch. That's really what spurred my research desire was I wanted to be able to quantify what we were doing and show what we were doing. That it's not just magical. It's not just something that we know.

When I started on my PhD and started doing some literature searching on feeding and normal feeding and feeding measures, which I just had no exposure to. I was just horrified at how little was out there ultimately, because we don't know. You had Jordan Hazelwood on months ago, and she said, we have to go back to the source. What's the ideology of what we're doing? We forget to do that and we just assume what we're doing is vetted and normed and reliable. In reality, it's not. We're basing a lot of what we do on very small numbers of children, very small numbers of studies, which were fine in and of themselves, but not a good foundation to be more sensitive in our assessment.

Our current issue is we have these wide age ranges of expectations for kids. We as clinicians are very concerned about identifying kids too early. We don't want to be an alarmist, but we also know that the kids that we end up getting at one and two had PFD in the first year of life. Nobody felt comfortable, or confident to recognize that, or identify it. They'll get over it, keep trying. They'll figure it out. They don't want to do it, because they have older siblings. Whatever that is, whatever that mantra is, it's just false.

My whole passion for my research is to identify feeding norms and age-appropriate feeding, which it's part of the consensus, we can talk about later. What is age-appropriate feeding? Not to put check marks on every single thing that we do, but we have to have sensitive and discreet norms, so that we can feel confident identifying these kids and treating them earlier and hopefully, eliminating some of these longstanding disorders that become very difficult to treat, ultimately.

[0:17:24] EF: I always think about it in the way, too, that with our younger kids, I think, to your point, when we see them later, we don't understand how they evolved to where they are at that point. Then we don't always know what strategies they use themselves to get there. If we are able to identify earlier, our job can then be to help that child and that family develop in a way that works for them. Because then, I think we're met with this was working for us and here's what I come from in my place and it's harder to meet there, because so much of what we do is supposed to support them and kids may never be age appropriate and that's okay, but how do we help them be functional for what works for them with the understanding of what is age appropriate?

Because we all develop the strategies for what works for us based on our differences. I have OCD and think way too quickly and move a million miles an hour, and it works great in some areas and not great in other areas. But I've developed that, because I've had so much support from the people around me. Really, if we can identify them earlier we can just support and help the caregiver build confidence that it may not look like what this other caregiver is doing with their child, but it works for you and have confidence in that, because these poor caregiver is going on social media. I don't know how they do navigate any of that. How can we make them feel empowered to know what's right for their kid?

[0:18:50] MD: Okay, wait. Erin is a psych major. Erin has Ð

[0:18:53] EF: I love psychology, too. Attachments at birth and feeding are so Ð because OTs, I think, because they came from the psychology world, they have a better Ð they jive into that world with more confidence, whereas we play a role in psychology. Also, we just get a little scared, I think. We develop attachment by labeling things for parents and helping them understand their kids.

[0:19:16] AD: Yeah, and that's where we all have our roles and that we need to understand what that background is, so that we can help facilitate that attachment, or understand where that went wrong early on. I think, Erin, you made a couple really good points, is early on in the literature that we do have, children struggle very early. It's usually not some event that has happened and all of a sudden, it's so obvious.

Our kids that are born premature with congenital heart disease, with a genetic syndrome, we're on them from the beginning. We're monitoring them. Not that that makes that easier, or that we have better care for them, but eyes are on them. We're looking for red flags. The kids that I have almost, I have equal passion for is our term, healthy kids, that we're not expecting. Those are the kids that fall through the cracks, because we're expecting them to just figure it out over time. Small things happen in that first year that it may be a red flag. It might be something that we can do something about if we have the opportunity.

But I think people get a little nervous when we talk about age appropriate and norms that we have to check all these boxes and kids have to fit into these boxes, and that's not the intention. The intention is we have to figure out who these kids are that are struggling and then put them into their own category and help them to maximize whatever their feeding potential is, and it's going to be different for everybody.

It's not unlike when children should be walking, or talking, or having a pincer grasp. We have norms for these things for a reason. We have to have some threshold that we can identify children and then go from there. They may not ever be age appropriate and that's fine, but we have to use those guidelines so we can get our hands on these kids. Otherwise, we don't.

[0:21:11] MD: One, there's a precedent already. The National Down Syndrome Society has a chart that compares and contrasts the norms you were talking about the typical age of acquisition and mastery for walking, talking in two words, talking in a sentence. They have that skill. Then they compare and contrast with the known developmental ability levels for most children with Down Syndrome. That I find to be such an empowering tool for caregivers, because then they can compare and contrast on developmental skill acquisition for other children that have the same genetic condition as their child, and there's variation within that chart. It's something to start us with.

My follow-up thought is a question that Erin and I have had and some feedback that we've Ðmaybe not feedback, but pushback that we have received on the ability of a speech-language pathologist to actually diagnose pediatric feeding disorder. Because when we look at one, if we incorporate the screening tool to actually start screening and folks, if you're not familiar with what we're talking about, if you get on Feeding Matters website, they have a six-questionnaire and it only takes just a matter of minutes to go through. It captures individuals that are at risk for a pediatric feeding disorder.

That six-questionnaire screening tool is not a diagnosis tool. It's a screener. Just something that we could incorporate within our child fine within the public schools, or as part of in South Carolina, we've started incorporating it into the early intervention, like where patients come into EI, that screening tool can be utilized. But if we go through the screening tool and then get to the point of the eval, because PFD has those four domains, we've had colleagues push back and say, ÒI can't give a PFD diagnosis, because there's nothing in the medical, or there's nothing I can't talk about the nutrition.Ó No. No, we can. So, help. I know. Okay, y'all can't see it, but all of us are stimming right now in excitement.

[0:23:29] AD: Okay, so I'm going to make a comment about the Down Syndrome population profile and then I will jump back to the diagnosis. You're exactly right, where we have some populations of kids that we treat that have more consistent characterization. Down Syndrome is one of those populations, kids with Down Syndrome. We can characterize what their overall development is going to look like. There's a wide variation still within the population, but there's more consistency, there's more characterization that we can create a chart like that.

You look at any other population of kids for the most part and it's so varied that we don't know enough yet to characterize what their feeding progression may look like, or their general development. Kids with preemie, how preemie? What other comorbidities do they have? What was their NICU course like? Etc., etc. Is just, you can't put them into a bucket. One of my goals over time is with my research program and with my conceptualization of what we should be able to do as clinicians is that I would like to start characterizing different populations of kids, so that we have a little bit more to go on and parents have more understanding about what's going to happen and how things are going to go with therapy.

[0:24:53] MD: That's amazing. I love that goal.

[0:24:57] AD: I mean, it's totally self-serving. It's all about me wanting to be a clinician and has something to go into a clinic room with. There's nothing that I do from a research perspective that I don't want to have, that I could directly walk into a clinic and say, ÒAll right. I can calculate this. I can look at this. I can check this off.Ó Because, well, otherwise, what's the point, for me?

[0:25:17] EF: Yeah. To your point, I think when we don't have that information, that's when we get into trouble with various treatment strategies that may not have as much research to back them up, because caregivers don't have any idea of what to expect, and so they're like, why not try this? Why not give this a go, because I have no idea and working in an interdisciplinary feeding team right now as well and we get so many Ð I'm very passionate about autistic kids, and we get so many of those kids that fall in a lot of categories.

The amount of times I've had people say, ÒWe don't know what to do with them. We don't know where they fit, or where they go.Ó But if we have a better understanding, even if they fit into multiple patient populations, which a lot of our kids do, but if they do, then okay, we see delays in this area with this etiology that they have. We also see delays in areas with this etiology. This is why this may be difficult, but this is also why we need to work on these other foundational skills, because of what's happening, because I have so many caregivers I work with where I'm like, we need to work on relationship and engagement, because feeding is so negative for them, and that's a foundational skill for feeding. But sometimes it's hard to grasp for caregivers, because they're like, you're not doing feeding.

[0:26:34] MD: But it falls under the psychosocial piece, so it is. It is feeding. Yes.

[0:26:40] AD: Well, it's like, why are you playing with my child to get them to talk? I mean, there's just not an understanding. TheyÕre eight months, why are you working on speech and language with them? It's the same idea. We are just in a feeding world even further behind in that awareness. From that standpoint Erin, and I promise I'll get back to Michelle, your other comment, but when we get these kids later and we know that early on things were happening, what I teach to my students, what I've taught to clinicians, when I've trained colleagues is the most important thing in my mind to do is a very thorough feeding history, from the moment they're born, up until the moment that I'm seeing them.

If I could choose that versus a current feeding, I would choose the feeding history, because I want to understand what they have been through from the very beginning. Walk me through your journey. What has happened? Where have been the pitfalls? What has worked? What have you done along the way? I look at every milestone, every texture transition, every method transition and understand where things started to go based on our current knowledge about our expectations, certainly. Because that will help me, like you said, help them now.

If I start throwing things at them today, but I don't understand how they've gotten to me, we're going to be spinning our wheels and we're going to frustrate the family, because they're going to say, ÒWell, I've tried that. I've been doing that.Ó Maybe we need to put a different spin on it, add a different strategy to that certainly. But part of that then helps us to talk our parents through what they've been through and educate them on what we think has been going on. That empowers them, because once they understand that their child's not being difficult, they're not being just picky, that they're not behavioral, or that the parents have done something wrong, then they can really, I think, open themselves up to our treatment and working with us and the best advocate for their own child, because they're not always with us, let's be honest. They move on and they need to continue to be an advocate for their for themselves. The only way they can do that is by understanding feeding and where it went wrong.

[0:28:48] EF: I always say that. The family wants to feel understood first. That's our first job is for you to come and they already know there's an issue.

[0:28:57] AD: Think before anybody.

[0:28:58] EF: The amount of times I've had caregivers cry in my office, because I've just sat with them and sat in what has happened, because sometimes they just need to sit in it and know that somebody gets to a Ð not to the same level, but to a certain level what they've been through, they trust you more and then they're going to be more likely to work with you and create that relationship to support their child.

[0:29:22] AD: Yeah, because they've been invalidated this whole time, because people have said, ÒOh, they'll figure it out. It'll be okay. Keep trying. Do this.Ó They have felt like their instincts have been wrong this whole time. When we finally say, ÒI hear you. You've been struggling. This is not how it's supposed to go,Ó yeah, they fall apart, because they finally feel like somebody hears them and understands. That's what it's all about.

[0:29:48] MD: But this is why we do caregiver coaching. This is why we have the caregivers Ð we focus on the caregivers and interventions and therapy, instead of meet them at the door, take the child away from them and give them the child back. I want to shout from all the mountaintops that we have got to make that the priority within our intervention. This is the basis of IDEA Part C for the birth to three. This is the basis of why we do the caregiver empowerment, to give them our knowledge and actually, meet them in those moments.

I go back to, we've had so many people reach out to talk about productivity, but they're faced with productivity and they're feeling that weight within the EI systems. But if we go back to what is written in the letter of the law for IDEA for Part C, part of the license professional, the way it's laid out, we are supposed to do caregiver coaching. The whole premise of this is empowering them and not doing direct service delivery.

People, if you're listening, please actually go pull up IDEA Part C and pull up your state rugs, because when you see that you'll understand that when you treat 92526, treating, feeding and swallowing, that is centered within the framework of IDEA Part C on caregiver coaching. That will meet your boss's productivity chart if you're stressed about that. Because that's a Ð let's face it, we've all been there in those jobs where, that sucks.

[0:31:32] AD: Well, and I think from a caregiver coaching standpoint, I say, I was so blessed to be at this wonderful facility where I learned so much. The downside of that was that's been my experience. When I have patients that would come in, because we would be really a diagnostic center, we treated kids all the time, but we really were doing that assessment and then they go back to their community providers and we would work together on that. But when we would have families, because we had families come from all over the country and have very different experiences and I'd say, ÒWell, what are they working on in your therapy?Ó They said, ÒI don't know. I'm not part of it.Ó

I grew up as a clinician, where my parents are always with me in the room. When we designed the interdisciplinary feeding clinic, we had equipment where we could put the monitor in the parent's ear, we could go behind the glass and talk to them and coach them directly without the clinician in. That's what I learned from my psychologist colleagues. That was their equipment and their desire, because they come from such a better counseling and educational model of the families than what we'd have.

I learned from them so much about how to educate families and talk them through strategies and to teach them and how to sit with the family and show them what we're doing, and then have them do it and then leave and talk with them through it. Because at the end of the day, if I can get them to do it and the parents can't, this is not helpful. Diagnostically, it tells me, okay, this child has the ability. We have a barrier here. Versus if I can't get them to do it we have a different scenario that's diagnostic for me. But if I want this child to learn to eat, they have to be able to practice this at home. If they won't do it for the family, they're not going to practice. Or they're going to practice in a negative way and we're going to lay down negative feeding behaviors.

[0:33:30] MD: Then that means that we as clinicians have to know developmental Ð typical developmental norms, as well as how to engage in adult learning, because that's us being able to teach the caregiver is do we know adult learning strategies? Honestly, I did not have that exposure, nor was I taught that in school, and that's scary.

[0:33:54] AD: Yeah. I mean, if particularly in the pediatric population, we're treating the family just as much as we're treating the child and we rely on them, more so from a feeding perspective than maybe speech, or language. But we are relying on that family to carry through the strategies that we have identified as being helpful, or facilitative, or whatnot. If they can't, or won't do that, it's going to impact our progress and we have to be able to account for that.

We also, like you had said, we need to understand development. We need to understand nutrition. We need to understand medical. Bringing that back to the previous comment about can we diagnose PFD and can we talk about nutrition and medical and psychosocial? Heck, yeah. We have to be. We absolutely have to be. It is our job as speech-language pathologist and diagnosticians to screen all areas of our child's development and medical status.

I'm not putting down congenital heart disease, or gas receptor reflux, or eosinophilic esophagitis, or micronutrient deficiency. No. But I can say, this child is at risk for X, Y, and Z based on my assessment and my analysis, I think this child needs to see a dietitian for these reasons. That is absolutely our job. When we document we can say, there is suspicion of dysfunction within these domains, these PFD domains that warrant assessment. It is absolutely something we should be doing. That is absolutely our job.

[0:35:40] MD: This semester, I gave my students an assignment to create a hypothetical case. I was actually really freaking proud of myself, because what [inaudible 0:35:50]. Okay, there's not much that I do that I'm like, ÒOh, I did a good job on that one.Ó But this one, I did a good job. If you're a student and you're listening, oh, I'm so proud of you all.

Okay, so I did a signup.com thing, because I love signup.com. Super freaking easy. I gave five hypothetical cases. I said, pick the case. Choose your own adventure, because I don't know if the students enrolled in my class want to work in the NICU, or if they want to go into the schools. I gave a hypothetical case for each setting and I said, your assignment is based off of this, complete the clinical swallow email. I gave them bare bones and everybody panicked. They were like, ÒWell, you said that it's an 18-month-old with trisomy 21 and a PDA.Ó I was like, ÒYup. That's what you got.Ó They were like, ÒWe need to know more about the case.Ó I was like, ÒWell, honey. That's all you're going to get. You have to then know where to research, what potential comorbidities are. The only way you're going to learn that is by actively researching, actively going out into the community and pulling materials and seeking to understand.Ó

[0:37:01] EF: ThatÕs what you did to me as a student.

[0:37:03] MD: I did a lifetime ago.

[0:37:04] EF: We step in the car and we had a diagnosis. I think it was, we had a child with birth trisomy. Sat in the car and she goes, ÒOkay, let's look at what might be happening. What diagnoses might happen and then how's this going to impact their feeding?Ó We went through it. That was the same day I asked her what deglutition was, which is so embarrassing. But they never used the word deglutition in my class. I just said dysphagia and she goes, ÒOh, honey.Ó

[0:37:28] MD: I did. But I will never forget the day, like a year later when you called me and you're like, ÒI just got a patient with Wolf-Hirschhorn on my case load. I was like, ÒYes.Ó Because it's so rare, right? But it was just full circle. But taking that medical and saying, patient has confirmed diagnoses of this from Ð and I have them rattle off of what Ð like, tell me what you do know. But then you can say, patient presents with signs and symptoms of please consider a referral here. What I got back from a lot of the students was they broke it down into the sections of the template, granted I built the template. YouÕve seen the template. I built that thing for them.

I was like, at the end, summarize it. Because you know what? Pediatricians are overwhelmed. They have their own productivity. If we consolidate it right there at the very end, it's probably all they're going to read, right?

[0:38:26] AD: Now it's so funny. I teach a diagnostics class and we cover the range of disorders. When we talk about documentation, I say, ÒOkay.Ó We talk a lot about what goes into a report and what is our facts, our objective data that we gather? Then our impression statement. Our impression statement is what makes us a diagnostician, right? Anybody can go and give a test and score it and transcribe and observe, but putting all of those pieces together from the medical history, birth history, understanding their medical diagnoses and what potential problems may arise from that in compiling all of that to say, ÒMy child presents with congenital heart disease and PFD based on the following characterizations, X, Y and Z.Ó

I'll say, docs aren't reading our report. Those reports are for us and to get insurance. The docs go flip, flip, flip, find the impression statement. What do you think and what do you want to do about it? That is such a critical aspect of what we do, because it's our conceptualization of our patient. Somebody else can read all the way up to the impressions and maybe have a different conceptualization of that patient based on their experience, or whatnot.

What's said in that impressions needs to be supported by your data above. Part of that then is understanding the medical parameters and the etiologies. Understanding the nutritional expectations and red flags. Understanding parent-child interaction and behavior and cognitive development and how that all plays a role in what we're looking at in the feeding skill domain of safe, efficient, age-appropriate. Then within age appropriate, texture progression, method progression, seating and positioning, feeding strategies, self-feeding and oral motor skills. Those are what we are assessing and we have to understand how these other parameters are impacting what we do.

Because we may look like they have delayed texture advancement, but maybe it's actually because they have an EOE, or a tracheoesophageal fistula status post-surgery and a stricture and they have stopped solids. That's part of the diagnostic workup. I can report that they're not Ð they stopped eating solids. Do I assume it's because they lost their chewing ability? Well, maybe. I mean, that's certainly a possibility. But if I go back in and know that EOE, or tracheoesophageal fistula with an esophageal motility disorder and it's likely to have a stricture, and then likely to have esophageal dysphagia for solids, that's important to know.

[0:41:19] MD: Literally, the podcast I'm listening to right now, Bowel Sound. I love them. Okay, NASPGHAN, I don't want to touch it, because if I touch it then it will start playing, but this was NASPGHAN, is the North American Society Ð whatever. It's the GIs for pediatric GIs for North America. Yes, they have a podcast folks called Bowel Sound. The episode that went out Monday, which was May 15th, is Ð No, I'm sorry. May 8th is esophageal achalasia in children, and they talk all about with one of the world's premier neuro GI docs, which blows my mind that that's still a sub-specialty. But he lays out the medical signs and symptoms and then ties in how it can result in a feeding disorder.

That gets back to what we hear in our evals is itÕs behavioral. What a pediatrician often misdiagnoses is this is a behavioral feeding disorder. What kills me is Ð what kills me is when we have patients that come to us and they've been diagnosed with ARFID, because it's behavioral, but they have underlying medical etiologies and there's all these other things. It makes me so frustrated, because the child's going to have this concept and we're telling this child, this is your choice, this is your behavior. Something's wrong with you. When it's not.

[0:42:56] AD: This goes back to our level of training and understanding about feeding versus swallowing. I will talk about feeding versus swallowing in a second, but in our feeding team, our medical director was a gastroenterologist, a pediatric gastroenterologist, which is great. 

Now some others have different kinds of providers, but I will say the amount of learning that I had by working with Colin Rudolph and Richard Noel and Praveen Goday, and all the others that we had on team is just mind-blowing. The amount of information and how they think about their patient and they'll be the first to say, they didn't know anything about feeding as a pediatric gastroenterologist. They learn feeding in our feeding clinic, just like dieticians do not learn feeding as a baseline, or as a foundation.

Same with us, right? We get a semester of swallowing, generally adult swallowing. You know what saddens me most is when people say, ÒOh, I do feeding. I don't do swallowing. Or I do swallowing, I don't do feeding.Ó

[0:43:58] MD: What? Nope, itÕs the same thing.

[0:44:04] AD: What I say is, let's just clarify that by saying, you don't conduct instrumental swallowing evaluations. That's what you don't do, but you do swallowing every time you're watching somebody eat clinically. You have to be a consumer of the instrumental swallowing information, understand how it's compiled, how it's run, the information that you can or cannot glean from, fluoro versus [inaudible 0:44:33] versus manometry. They're all very different. They give you different information, and there's reasons why you would choose one over the other if you have a choice.

You have to understand the physiology of all of the phases of swallowing to understand what's going on with your child in front of you. That is one of the most critical things that should be and is our responsibility, because this is one thing that we can do that could really harm our patients if we're missing something, because we don't understand the physiology of swallowing, in all phases of swallowing, not just the oral phase, which is what we think when we're doing feeding, we're doing self-feeding and the oral piece of that. That's just not true. We have to understand all phases of swallowing.

Then, what medical etiologies might be impacting each and every one of those phases of swallowing to then show what we see clinically when we're observing a child eat. We have to have x-ray vision, as I tell my students, and try to visualize what's happening in the pharynx, or in the esophagus, or in the nasopharynx during the swallow that might be contributing to what we're seeing, or what their problems are.

We just don't have it to that level in our training. I mean, I was so fortunate at Marquette when I started, they asked if I wanted to develop a course and what might that be, like well, good God, a pediatric feeding course. Can it be three credits and it can be just pediatric feeding? They're like, ÒSure, go right ahead.Ó I teach it as an interdisciplinary topic. I have a gastroenterologist come in. I have a dietitian come in twice for normal and assessment. I have a parent come in. I have a psychologist come in, and we talk about their role and what they look at and then how we work together to manage these patients.

That's ideal. Certainly, an interdisciplinary team is ideal. Not all patients need that in that type of way and we may not ever have the opportunity to work in that type of situation, but you have to be thinking like an interdisciplinary team when you see your patient and screen for them and then get them to the appropriate providers. Otherwise, we're spinning our wheels.

[0:46:53] EF: We also have a very Ð a skill set that I think sometimes feeding therapists forget to use, and that we understand communication on a very deep level. So much of it, what feeding and dissecting that is listening and seeing what a child is doing and those very tiny, maybe unintentional behaviors that are communicating something. I have a patient I work with that they found out that one of her legs was longer than the other, because she just kept pointing to her leg. She has a trach. Mom just is so in tune with her and just listened to her and was like, ÒSomething's going on.Ó

Recently, she's been pointing at her throat, so we're worried about something esophageal. But we understand that. We are the people that can really sit and see these minute changes in behavior, which is communication, to be able to understand when maybe a strategy we're using isn't being responded to very well, or maybe they're giving us new information. I always say, you may say you're as feeding therapist, but you should always keep your communication speech language hot on, because that is so valuable in everything that we do.

[0:48:01] AD: Absolutely. We understand normal development and we understand normal communication and disorder communication. You're right, we are first and foremost trying to Ð try to understand our patient in whatever way possible that they are communicating with us. If it's a facial grimace during a swallow, or it's them saying, ÒThis is uncomfortable. Don't feed me,Ó both of them are equally as powerful and meaningful. I agree. I totally agree, Erin.

[0:48:31] MD: I feel like, this is where it gets back to for the patients that are non-speaking that utilize AAC, we have to give them access to AAC during feeding therapy, even during caregiver coaching. I've had pushback from colleagues and students when they're coming through and they're learning it. Oh, I see the puppy. They've said, ÒBut we're doing feeding therapy. We can't work on language in the same session.Ó I'm like, ÒThen how are you going to understand what textures they like, if they like?Ó I have one little guy that we would go through, all right, is this salty? Is this sweet? Just picking out the vocabulary words and if he found something that was sweet that he liked, well then, let's go down the sweet rabbit hole, or let's go down the umami. Also, when he did umami, he would full body wiggle when he did it, because that was the favorite flavor. Empowering them with the language in their natural preferred manner means AAC can have a role in feeding therapy, and we can't separate those two out.

[0:49:36] EF: Well, they should probably need it more, when they're at a table that's very stressful. It might be harder for them. Even if they are partially speaking, when they sit at the table and they're anxious, they need that device more to tell you, just know. I want to make sure when a kid comes to the table, I have a consistent way of them being able to say no, no matter what. Because otherwise, they're not going to sit there. They're just going to Ð I get why they're running away.

[0:50:00] AD: I think feeding therapy is a perfect time to work on communication, because we eat five to six to 12 times a day. We need to have communication around that. We need to be able to have children communicating with their caregivers, so that it's positive and they can get what they need. I think sometimes, we try to separate out the things that we do as speech-language pathologists and really, it's so integrated. I think it's an excellent time. It may complicate your therapy a little bit, because you have dual goals and you might get backtracked in one versus the other as you're trying to work that out.

Ultimately, when we're trying to send families home, it's not a treatment plan, it's a feeding plan. It's, what can they do every single day at their meal that's not extremely stressful, that's positive and getting them nourished and having positive feeding experiences? We can do the hard work and skill advancement. They should be doing that anyways, right, at meal times on a regular basis. Certainly, challenging them, but not to the point where it's make their meal times difficult. I think it's an excellent time to work on communication and social skills and social interactions and building that trust and that relationship again, which inherently, has often been broken in these families.

[0:51:25] MD: What of your research are you most excited about?

[0:51:28] EF: ThatÕs what I was going to ask, Michelle. You read my mind. I was like, ÒWait, but I want to hear about your lab.Ó Can you tell us more about it?

[0:51:35] AD: Yeah, for sure. Me never planning on being an academic had never considered what I wanted to have for a lab. When I had the opportunity to apply to Marquette, I had been at a point in my professional career, I had been at the hospital 20 years. Boatloads of experience, thousands of patients, tons and tons of interactions. I was trying to Ð once I had finished my PhD, I went back full-time to the hospital and I had protective research time as well. But patient care always trumps anything else.

I also was doing program development type things and help develop an infant feeding clinic with our lactation folks. Those things just took away from research. I had decided that I really needed to be able to do rigorous research and I had to be at a university. Children's isn't attached to a university that has a speech program, so there wasn't that linkage that some of the hospitals do. I felt it was time to move on to the next part of my journey, ultimately. I also felt like, i was ready to teach clinicians and impart the knowledge that I had gained, because it was a unique knowledge and unique experiences.

Part of the interview and onboarding process was what do you want in your lab? What kind of equipment? What do you want to do? How much money do you need to spend? I was like, ÒOh, good God. I have no idea. I don't know how to set up a research lab.Ó Yes, I'm a PhD, and that's part of your training, but I've been so far off my radar as well, because I had been out for so long and that was just not what I was going to do.

What I did decide was that I'm going to continue to observe children eating. My dissertation was on typical infants. I videotape them. I created a feeding measure that we are working on for eventual distribution, but creating all of the oral motor movements that occur during a feeding trial by different textures that we can checklist off. I knew we were going to continue that work. I worked with a company called Noldus, and they have camera systems and then coding software. One of the things I love most is I have a lab space, where I have four cameras. I have two cameras on the child's face, so if I get them turning, because obviously, they're going to. I have a camera for the theater, either a research assistant, or the caregiver. Then I have a diad camera, so I can do the interaction between.

The coding software that I have pulls all four video feeds in and we then have a whole coding scheme on. We might code just the cranial nerve exam. We might code parent-child interaction. We might code one of my projects that we presented at ASHA the other year was acceptance, or refusal of bites. One is a bite presented, one is it accepted or not accepted, and looking at rates of acceptance and refusals and the timing of that. We can do all of this on in our coding software and then analyze. Anything you want to know about feeding, and I'm always way more detailed than I need to be, but we have seating positioning, texture, method. We have timing. We have parent-child interaction. We have a cranial nerve exam.

We have a variety of other measures that we're doing now with grip strength and pincer grasp and strength. We can do physiologic data collection with heart rate, respiratory rate on the parent and the child to look at stress cues during feeding. That's weÕre just venturing into.

Then I'm working, I have Dr. Kate Barlow is OT. She's with Feeding Matters as well. And our biomedical engineer out east. We are developing a tool that we can measure maximum bite force and then chewing efficiency, so we can start looking at norms for these and how that correlates to texture and grip strength and a whole host of other things. My path has very much become what is age appropriate with the distinct intent to simultaneously capture all of these same data on kids with prematurity, kids with genetic syndromes, kids with complex medical congenital heart, or complex airway, and characterize them on all of these measures.

One, we have a comparison of typical kids from four months to about four years and then how do kids fall along this this progression over time. That's really where we have spent a lot of our time. That's what's really exciting. I think, what's been really most exciting was the paper in 2021, a texture paper that we had come out. This was a totally unique texture analysis that I created from sitting with my dietitian friends in clinic.

We sit together, we do a 24-hour diet recall. They're calculating food groups, variety, they're calculating calories and volume. They're crunching all their numbers and I'm seeing her going, ÒGreat. They're eating baby food.Ó I started making tables. In clinic, as I'm saying, I'm like, ÒOh, well, I could chart that.Ó Then I started listing up texture as IÕm making a list. Then tracking variety and then oh, well, it's not just that they have the texture, it's how often. How many meals are they eating that? That's really important. More so maybe even then that's present in their diet.

Okay, well, even though they might have it five times a day, how much can they take by that? That really talks to me about efficiency and skill. The paper that we did in 21 was based on my 63 kids from my dissertation. We had diet records on all these kids and we created a analysis that is presence, frequency and volume of intake by texture. From the kids that we did see at eight, 10, and 12 months, we can look at the changes across time in presence, when does the texture show up? How long does it stay in the diet?

A baby food texture, a puree obviously is going to show up, let's say, around six months. Then puree stays, but not at the frequency it does. It peaks. Where if we have it at most meals. Then it goes away. Then we might not have chewable solids and then that starts to peak in frequency and then plateau at a high rate over time. What we're starting to create is almost what looks like a growth curve of presence of texture, frequency of texture and volume of intake that we can track over time.

There's a point in time and we're still looking at finalizing some of the data by 18 to 24 months, a lot of these features have stabilized. What my goal is is that we can start to narrow the range where there's so much variability in expectations, and it's a moving target constantly to, okay, these textures should be present in the diet. Now at this age until the end of time, these textures should be present. That's easy. I can do a checklist on that. Or, they should be consuming these textures at each of those meals for the most part and not relying on puree at 18 months for 75% of their meals. It should be solids.

These are ways that we can start to quantify what we're doing as clinicians to track the age appropriateness of their diet. Also, their progression in therapy. Because these numbers will change if our intervention is effective and we are tracking it in the right ways. This has been one of my passions. I was given the opportunity to work with Nestle, and they have a, let's see, every eight years, they do a study called the FIT study, Feeding Infant Toddler Study. They do a national sample of a 24-hour diet records on children from all over the country. It's an actual norm sample and they do all of these nutrition analysis.

They have beautiful nutrition data out there on how kids eat, what their diets look like, how that changes over time. We've been given access to this data set, and so we're in the process of applying a new texture framework that we've developed and we're running this analysis on a national sample of kids, from four months to four years. We'll be able to create these texture profiles over time that my goal would be that we could eventually use them to plot our kids that we're seeing against and identify as much smaller age ranges when things are going around, and we can track and quantify what their diet looks like and how that might change over time during our intervention. That's a huge project that we've been working on.

We will couple that then with the actual oral feeding observations and skills and how that supports that. We start to pull together different aspects of our research, where we're looking at mastery of skills, oral sensory and oral motor development, behaviors and mealtime strategies, overall development and then their texture profile. Those are all different arms of our research that obviously, start to start to overlap and inform each other over time. That's been a pretty exciting project and really, findings. I think it's going to change feeding stages, perhaps.

[1:01:30] MD: Can I be selfish and add in a request? We add in Ð I mean, this is huge. I have no idea how huge this is, but it's huge. But my tiny little request is could we quantify the volume of liquid intake in the form of a bottle, a sippy cup, or a cup? Does it have to be down to a cup? But as a mom, I have to be mom first. I can't be therapist. I remember worrying about when we're going through those transition and food stages, how much formula, breast milk, water should we be getting in.

Then as I've grown as a clinician and grown to understand that some of the food charts that are provided to us, the plate with what you're supposed to have in each portion of the food pyramid, they're biased. Certain companies pitch to have their product labeled higher. They're also assuming that a child doesn't have a dairy allergy, or an intolerance, which we know that indigenous Ð my kids can't have a lot of dairy, wherein people with indigenous backgrounds, that goes hand in hand. We know that from research.

It would be amazing as a therapist sitting in a patient's home, having, okay, your child's here, you can anticipate as we move up in this process to start seeing less formula intake, less. Being able to share that relationship with the caregivers would be huge.

[1:03:10] AD: Because those are really functional aspects of it. From my dissertation and from the paper in 21, we did comment on presence of different types of cups, bottle, breast and then open cup, sippy cup, straw, I think. I can't remember if we collapsed a couple of them. Because to me as a clinician, if I'm seeing an 18-month-old and they're strictly bottle feeding, to me that's a red flag that they can't transition to a cup. It might be parent preference. There could be a whole bunch of reasons. But to understand that much earlier on, they should have had some exposure.

A lot of what we're trying to also do is just to create better guidelines for parents and for caregivers and pediatricians, because a lot of these things could be handled early on if we say, they're really struggling with that open cup, let's give them a spout cup. I don't care if you're on a spout cup. The only time that that spout cup is going to cause problems, if you're walking around with that thing in your mouth 10 hours a day, like your thumb, the dental literature does not state that you're going to have dental changes over time, unless it is chronic input into the mouth.

Me as a clinician and I'll tell my parents all the time, a spout cup is fine. You just have them drink it when they drink it, and then put it away when they're not drinking it. That is fine. You're not going to cause any major problems.

[1:04:31] MD: Also, as a mom, you have a little girl. Are you going to give your 18-month-old daughter over carpet an open mouth cup? I mean, no. Because I don't need Stanley Steamer gives enough of my money. They're going to have to come out to the new house, because I gave my eight-year-old a fudge sticker. Let's be honest. Yeah. Also, Bear just explodes.

[1:04:54] EF: A lot of the lectures I've been doing recently with my OT, partner in crime, are talking about the capacities of motor development and language development. I think with feeding where we struggle is that we see all these delays in their motor and their language, but we still have these expectations for their feeding that are much higher than where they are overall. If we looked at them holistically and maybe had more informed norms and milestones, we could start to put those things together too of, ÒOh, I'm seeing ÐÓ and we have, like Michelle and I talk all the time about if you're not reaching across midline gross motor. You're probably not going to reach across midline fine motor with your tongue and things like that, but we don't have as much of that direct knowledge.

What we're asking a child to do to not just eat, but to sit at the table and engage and eat is all encompassing and we have to start to have better understanding of them overall. But this can be so helpful, too, for maybe the people that don't come into the field for anybody, but I learned from OTs and PTs and all those milestones from them and that's why I have a better framework. Starting out, you don't know all of that.

[1:06:04] MD: Yes, but you engaged in interprofessional education. You sought that out, which not everybody knows to seek that out. Some people are told not to seek it out and then some people, they don't have the time built into their day, or they're isolated.

[1:06:20] AD: They're in facilities where they just don't have people around them. That's the problem where we put CFs out into early intervention by themselves with no support, right?

[1:06:29] EF: I have Michelle. But that was me.

[1:06:30] AD: Yeah. But you have to really be persistent and confident to be able to go and understand that you need this information. From a feeding perspective, what are the readiness skills for solids? Sitting, head control, reaching, right? These are things that we've seen. There's not a ton of literature that really directly connects that, but that's our general working concept, right? But what we don't really know in the early stages, up until again, four to six months, until 18 to 24 months, every developmental domain is dramatically changing over time, and there's so many moving parts. This is why this age range is the least studied, because it is freaking complicated.

It's hard. We have to consider each of those developmental domains when we're looking at feeding. Interesting, Erin, that you're commenting on the motor aspect. I collect motor milestones for my kids and we'll do more assessment when we have them in, when we actually get kids in lab, finally, because that'll be a frustration I'll talk about. But what are their motor skills and how does that support their feeding is so critical.

On the kids that I did for my dissertation, we did a poster. I think we did at Feeding Matters with one of my students. We looked at their texture profile and their motor components and their oral motor, their oral feeding skills. What we did was we always group our kids by age. I have kids at eight months, 10 months, 12 months. Okay, great. Then we said, well, okay, let's regroup all these kids based on their motor status. Regardless of their age, let's put the kids that are walking into a group, kids that are sitting into a group and kids that aren't into a group and create these unique groups.

Then the other aha was, well, gosh, their experience with textures is all over the place. There's a lot of variability based on what parents have done and what they've been told. One child may have had three months of solid food experience and one child may have had two weeks. How can I compare them? We regroup them by the experience in their textures and we compared them in different ways, so they had groupings of experience, like 10 weeks or more experience with the texture; zero to two weeks, that introductory phase, and then we looked at their nutrition. What was their intake by nutrition? It was just really fascinating to look at how the trends are different based on experience, almost more so and followed by motor and then age.

Experiment within this category at a greater level, because it was not on the radar when I had collected the data initially, so I didn't have the level of information that I really needed at the time to be robust in the study. But in our little kids, there is likely with motor learning, there is periods of time where we should have certain expectations for our kids for feeding and not for others. If they're 12-months-old and I'm saying, here's my checklist. Oh, well, they should be eating solids. But if we don't say, ÒWell, when did you start offering these?Ó They say, ÒOh, two weeks ago,Ó my expectation is different than if they started it three months ago. We do as clinicians think about that, but we don't take that into so much consideration when we're assessing our children.

[1:10:08] MD: I have a question. When you say experience and exposure, that's Ð I've had caregivers ask that question. Well, I gave it to them how come they're not wanting to do it again? My caveat is how many experiences? If you've exposed them to it for two weeks, but they've only seen it once a week for two weeks, that will influence their exposure. If I only gave my typically developing children Ð they're a little quirky every once in a while, Brussels sprouts once a month and then expected them to eat it, like you see what I'm saying?

[1:10:45] AD: No, this is exactly it. It comes on to semantics, too. A research colleague that where we're creating this new texture framework to do this analysis on the national sample, we have had long conversations about introduction exposure experience. When is it first introduced? That's your start point. Then your experiences from time A to time B. But how much practice have you had? You think about learning piano. Oh, I first started playing piano three months ago. Today, I am playing piano, but I practiced it once, versus I practice it every single day. Changes my thought about, can you learn to play piano or not? Can you learn to chew or not? Depends on how much practice.

That's where that texture analysis comes in, too, of that's great, you have this texture in your diet and that's appropriate, but how often are you eating it? ÒOh, we offer it to them once a week, versus three meals a day,Ó is very different. If I say, ÒI have an 18-month-old and they have liquids, purees and chewable solids in their diet.Ó We're like, ÒGreat. That sounds really appropriate.Ó Then they say, ÒYeah. Well, they eat that chewable solid once a day.Ó I'm like, ÒOkay, that seems a little delayed, but okay maybe. Then how much?Ó ÒOh, they take one bite.Ó That's a very different 18-month-old profile than they eat chewable solids at each of their main meals. It's the majority of their nutrition is made up by that chewable solid and they're drinking their non-formula, nutritious beverage. That's a very different profile than the former. That's where thinking and analyzing the diet and what they're doing can give us such insight into what's happening and how that then influences their skills and abilities.

[1:12:43] MD: I had a little boy that I worked with with a OT. The dad just wanted us to get him to eat. Just make him chew it. Just make him chew it. We were probably 22, 24 months autism. They were working on getting him evaluated for autism. I think we ended up getting the diagnosis before I left. I kept coming back to, but what are we doing to expose him to this and one, a friendly, positive, no pressure manner? Dad says, ÒWell, we put him in the high chair once a day and we force him to eat it.Ó

We had to remove all the negatives, get rid of the high chair. But what you're talking about is in my head when I'm translating into therapy, systematic desensitization of exposure, of just having it present without pressure, without the forcing it on them, but just maybe presenting it in a fun way. Erin is the queen of painting with textures and playing and like, oh, my God, making a joyful hot mess. You're like, ÒYeah, accurate.Ó

[1:13:54] AD: Well, I have parents come in and this is where, too, it's our role as well to talk to the caregivers about how they eat, because we'll have parents come in and like, ÒI want them to eat carrots.Ó IÕm like, ÒOh, how often do you give them carrots?Ó We never give it to them, because I don't like carrots.

[1:14:11] MD: Well, then why are ways out of goal?

[1:14:12] AD: Well, right. But that's our job to understand that, because parents aren't thinking in that way. ÒThey need to eat more vegetables, but I don't eat vegetables because they make me gag. But I need them to eat vegetables.Ó It's understanding, even the caregivers, what do you eat? How do you eat? Where do you eat? What's your variety? How do you guys cook? What do you make? What are your preferences? What are your allergies? What are your restrictions? Because that continues to alter then, what are reasonable goals for our kid? We got to set them up for success. If we're going to give them carrots, but the parents never eat carrots, we will never meet our goal and we will lose our insurance.

[1:14:50] MD: Okay, so one, we're so far over in time, but that made me think of a thought. Dr. Zimmerman, y'all, Dr. Emily Zimmerman, she's in Boston at, I can't remember the name of the school, but she's in Boston. She has a co-worker that she told me about that works with caregiver eating disorders, and the prevalence and how it shows up as a pediatric feeding disorder, based upon the caregiverÕs eating disorder and their relationship with social media, which I just found to be fascinating.

In retrospect, I've had patients whose caregivers had eating disorders that they disclosed to me in the course of working with them in their home, and then it made sense why this child had certain presentations, right?

[1:15:37] AD: Yeah. We have to understand what's happening in the home to make reasonable goals for our kids. We have to understand that the goals the parents, or caregivers are asking aren't sometimes legitimate, because of how they eat. That's part of that education as well. It is. I mean, if a child hasn't been exposed, or has had consistent negative exposure to food, or have had one exposure and not again exposure for months and months, I tell parents, they will never eat the food if it's not put in front of them. It has to be on the table. They have to have some exposure to it, either prepping and helping, playing with it, putting it in the middle of the table, putting it into your no thank you cup, or whatever it is, go and throwing the garbage. They're touching it and they're being exposed to it. I don't care how that happens, but you have to have that in front of them and they have to be exposed to these things repeatedly, right, and what, for every negative interaction, you need five positives to undo a negative. That's a boatload of positive experiences if we've had a ton of negatives. Educating parents that this isn't going to change quickly, and we have to be persistent and positive with it and patient.

[1:16:51] MD: It's the journey. We walk with them in the valleys. We sit with them there, just like Erin was talking about earlier. But my God, when we get to the mountaintop and every kid's destination is different, but when we're there, God, it's beautiful.

[1:17:07] AD: It's amazing. Yeah. I have families that I still keep in touch with and they'll comment on Facebook, or give me highlights of what's happening. These kids are in high school now and college. It's amazing and they remember, because feeding is an integral part of everything you do every single day, that it's just we get that place in their house and in their hearts and vice versa, because it's such an intimate relationship.

[1:17:35] EF: I had a mom text me last weekend and she was like, it's a birthday and she goes, ÒI remember when vividly you sat in our living room and you said, she's in there.Ó She has a sparkle. She goes, ÒI never forgot that and I'm finally starting to see her personality, and I just want to thank you for continuing to advocate that she was in there.Ó I was like, ÒYeah.Ó

[1:17:58] AD: We have to give that to families, because if they get stuck in the weeds and they can't see those small changes, and that's Ð I have a parent that comes and hands down, regardless of the information I impart to my students, hands down, Pamela Knight who's one of my former caregivers that I had treated, she comes in and talks about her experience and she said, and they love that, most of anything in class. But what Pamela has consistently said is that in our therapies, we helped her to see those very small changes and successes that she just couldn't possibly see. That's what kept moving her forward.

That's really our role as clinicians is to help the families see that these are important changes, even though in their minds, ÒI need them to take a bite.Ó I'm saying, they're tolerating it in front of them. That's amazing. That's a great success. Let's celebrate that success. Then we'll get there. But that's, hmm, eight steps down the road. Breaking down into such small, small baby steps is so critical and helping them to understand that that is a success.

[1:19:06] EF: I have them make a calendar sometimes of all the positive things that have happened, which I don't feel like they all always do it, so now as you were saying that, I'm like, ÒYou know what? IÕm going to buy calendars. When they come into my session, we're going to write the good things that happen that week, so that they have to talk about those good things and then they can keep it with them.Ó But that was my OT colleague recommended that to me. She's like, ÒI tell my parents to buy calendar and write the positives. Just write good things that are happening, because we're always going to look for the next thing we have to work on. But let's remember that day when he licked the ketchup from the tray. That's a pretty great day.Ó

[1:19:44] AD: That's just, I have something to celebrate. Absolutely.

[1:19:46] MD: You guys got me in my feels. Okay, all right. I have two, three brief questions. One, if you were a photographer back in the day, I want to know what was the favorite photo you've ever taken that when you look back on and you're like, ÒOh, I love that oneÓ?

[1:20:04] AD: I go between very pretty landscaping pictures, but I love capturing individual people not knowing that they're being photographed.

[1:20:15] EF: ThatÕs so candid.

[1:20:17] AD: Candidates are just catching people in their Ð

[1:20:20] EF: Michelle is not great at taking candidates, though. She gets you at your worst angle.

[1:20:25] MD: Every time we have to do photos, ErinÕs like, ÒMichelle, just hold the button down. Just hold the button and then just go.Ó

[1:20:33] AD: There are people out there that yes, just can't quite look the right position, right? I love architecture, and so everywhere I go, I see the world in pictures. I'm always like, ÒOoh, that would be a great picture. Oh, I like that.Ó I have 30,000 pictures on my photo app. But, of course, my daughter is my favorite candidate at the moment.

[1:20:54] MD: Next question, I'm doing a poll here, because you also love psych. Do you listen to Murder Podcast? Because I know so many SLPs who listen to Murder Podcast, yeah, or crime podcast? Yeah.

[1:21:07] AD: I have not. I have thought about it. I'm trying to stay on top of my Ð within the field podcast. I have not moved into those yet, but I hear that they're pretty amazing.

[1:21:21] MD: Okay, 99% invisible. If you love design and architecture, 99 invisible is the history of design, and they talk so much. Roman Mars from beautiful uptown Oakland, California. I love him. He's wonderful. He's got kids and it's neat to hear him talk about that. Okay, and then my next question is where can folks reach you if they have questions?

[1:21:44] AD: I have Instagram, @PFDFeedingLab_Marquette. ThatÕs it. We're there. We do not fancy ourselves social media savvy by any means. Our attempt is to not compete with anybody else that has the skill set. We pop in and out on occasion. We are in the process of building some posts just to have a presence there and be a little bit more on top of it. That's the wonderful thing about having grad students that work for me, which I never had before. Yeah, so we're definitely on Instagram. You can go to the Marquette website and we have a lab page there that just highlights things that we're doing and my email is on there. Always email, amy.delaney@marquette.edu is also open to any communication at any time.

[1:22:31] MD: As my grandma would say, if you have any mad money lying over at the end of the month, which is a little bit of love money, little extra, and somebody wants to make a donation, what organization would you like them to donate to?

[1:22:42] AD: Yeah, hands down, Feeding Matters. I have volunteered for them since 2010. I've been on just whatever committee and whatnot with them. Such a powerful and passionate organization that I just love and will volunteer until the day I die, unless they kick me out sooner than that. Everything that they stand for is so amazing. Right now, we do have May is PFD Awareness Month, and so we do have a fundraiser going on. I do have on Facebook a page for myself, for my own fundraiser for PFD, for Feeding Matters. Donations would be amazing to help us meet our goal. Getting this awareness out and the advocacy that they have been really working on is just so critical.

We don't have a puzzle piece bumper sticker yet and we don't have some of these identifiers that people just finally know, ÒOh, that's related to autism. This is my conceptualization of autism.Ó Feeding disorder is just still that thing that some kids have and it's picky eating and it's just so not that. I think the only way that we're going to really get the support and funding that we need is that it becomes, as they say, a household name. But just an understanding of how complicated feeding really is and how families around you are struggling to look around, one in five, right? Somebody is really struggling, and I think that's hard for people to understand. We just have to keep working hard to get that awareness out there.

[1:24:13] MD: Perfect. Okay, folks. If you haven't heard the episode, please go back to episode in First Bite number 234, where we interview Jaclyn Pederson, who's the CEO of Feeding Matters. Athena. Athena, I'm going to butcher your name again, babe. Flicek. I think that was closer. Then Lambert. Athena is the Advance Manager and Jen is the Director of Events with Feeding Matters, and we've had them on, Erin, what? Three, four additional times. Jaclyn and various members of Feeding Matters, including Kyler Romeo. We love them. Highly recommend you go back and check that episode out, so you can understand how Feeding Matters has given us this foundation for what PFD is and how they're drop kicking us forward at expedited rates of speed with joy. Thank you. Amy, thank you for coming on.

[1:25:05] AD: Thank you so much for having me. It's been a blast. I'm just honored to be here, so thank you.

[1:25:11] MD: Thank you. Thank you.

[END OF INTERVIEW]

[1:25:16] ANNOUNCER: Feeding matters guides 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.

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, a 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 PFD Alliance tab and sign up today. Change is possible when we work together.

[1:26:07] MD: 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 PFDs 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.

[DISCLOSURE]

[1:26:55] MD: Hey, this is Michelle Dawson. I need to update my disclosure statements. My non-financial disclosures. I actively volunteer with Feeding Matters, National Foundation of Swallowing Disorders and FOSD, Dysphagia Outreach Project, DOP. I am a former Treasurer with the Council of State Association Presidents, CSAP, a past president of the South Carolina Speech Language and Hearing Association, SCSLHA, a current board of trustees member with the Communication Disorders Foundation of Virginia, and I am a current member of ASHA, ASHA SIG13 SCSLHA, the Speech Language Hearing Association of Virginia, SLHAV, a member of the National Black Speech Language Hearing Association, NBASLH, and Dysphagia Research Society, DRS. Additionally, I volunteer with ASHA as the topic chair for the Pediatric Feeding Disorder Planning Committee for the ASHA 2023 Convention in Boston. I hope you make it out there.

My financial disclosures include receiving compensation for First Bite Podcast, from speechtherapypd.com, as well as from additional webinars and for webinars associated with Understanding Dysphagia, which is also a podcast with speechtherapypd.com. I currently receive a salary from the University of South Carolina and my work as adjunct professor and Student Services Coordinator. And I receive royalties from the sale of my book, Chasing the Swallow: Truth, Science and Hope for Pediatric Feeding and Swallowing Disorders, as well as compensation for the CEUs associated with it from speechtherapypd.com.

Those are my current disclosure statements. Thanks, guys.

[1:28:52] EF: The views and opinions expressed in todayÕs podcast do not reflect the organizations associated with the speakers and are their views and opinions solely.

[END]
FBP 236		Transcript

	©Ê2023 First Bite Podcast	29