[00:00:00] Speaker A: Feeding Matters Infant and Child Feeding Questionnaire was developed as an evidence based tool to promote early identification of feeding disorders. Developed by internationally recognized feeding experts, this online questionnaire, available in both English and Spanish, can help you better understand your child's feeding differences and needs. Take it online for free
[email protected] that's questionnaire Feeding Matters. Org or type ICFQ in your search bar.
[00:00:29] Speaker B: Presented by B Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding DOES Matter.
Hello everyone and welcome to Feeding Does Matter. I am continuing with our 20th anniversary interview series. And so it's my great pleasure to introduce you all to someone that you all know very well because she's a celebrity in our world and we are just so grateful that she's been able to help guide Feeding Matters for these last two decades of our our work. So, Dr. Aaron Ross, thanks for joining us.
[00:01:09] Speaker C: Thank you for having me. I'm super excited about talking about Feeding Matters, one of my favorite things to talk about.
[00:01:19] Speaker B: Well, I love that. And you've just been so pivotal to our growth. And so I appreciate you coming on to talk about, you know, all of the different memories and things that happened over the years. And so I guess maybe let's start with just a little bit about you, just for anybody who might not be aware. I don't think there are many, but maybe.
[00:01:40] Speaker C: Well, I am a speech and language pathologist and I primarily work in the neonatal intensive care unit trying to help babies and families get off to the right start so that they don't end up with PFT.
I started in older children in 1993 is when I saw the first child who had a pediatric feeding disorder, although way back then that was not a diagnosis.
And so it's been a long road. And I kind of feel like the longer that I was working with older children, the more I kept thinking there's a way to keep these families from going down this road. And so I think that's why now at this point in my career, I am only working in the neonatal intensive care unit, although I still teach about pediatric feeding disorder.
[00:02:39] Speaker B: Wonderful. And how did you get involved with Feeding Matters?
[00:02:44] Speaker C: Oh, actually with my very good friend, Dr. K. Toomey, who I was working with.
That is the program that I was using with the older children. And she had been working with Shannon Goldwater. And when Shannon broached this idea of getting together professionals, Kay asked if I could join them. And I think because of my work with babies and very early intervention, and so that was A really, really weekend.
[00:03:27] Speaker B: So you came to one of the consortium weekends originally, because I know that Shannon did ask a lot and Chris asked for what professionals they needed at the table, and they really relied on everybody. So I think that makes sense that we were like, we need the expert in early, early, early intervention.
And so you're at kind of one of those early consortium meetings where there was a lot of brainstorming about what we need to do in the field.
[00:03:51] Speaker C: Yeah, yeah. I think actually I was at the very first one where none of us knew each other. We knew of each other, but there were a lot of people there that we didn't know. Colin Rudolph brought his team, which was wonderful because that was very representative across pretty much every discipline I can think of that would be needed. Marcia Dunn Klein was there, Erica Gazelle was there.
And you know that I don't. I think she's stopped working in the field now, but she was certainly one of the people who had written the very, very first research articles on chewing.
So it was really, it was a fun weekend to try and get to understand each other and think about feeding from all the areas. Right now with pfd, we know about the four domains, but back then we hadn't really articulated it in that way.
[00:04:59] Speaker B: And so, yeah, you knew the whole, you knew that there were holistic pieces between everybody's discipline that needed to be looked at and you're kind of putting that puzzle piece together.
[00:05:10] Speaker C: Yeah, yeah, yeah. You know, we, we in our, in the group that I was working with, with Dr. Toomey, we had occupational therapy and a physician and dietitian, speech language pathology and psychology.
So we did have that, but a lot of people didn't back then and don't even now. Right. A lot of therapists especially are working by themselves in private practice or in early intervention. Now. It's very common early intervention to have a primary therapist. So that therapist may be a physical therapist or an occupational therapist or a speech language pathologist, but they're sort of cross trained to screen. That's how I think about it. To screen for needs of the child. And of course, with feeding, there's so many. And that would just be feeding skill domain. Right.
Include the nutrition domain, the psychosocial domain or the medical domain.
Yeah, it's.
[00:06:24] Speaker B: It was just like almost kind of uncovering things as you all continue to collaborate. And that's what, hopefully we were able to set the stage for that collaboration.
In those meetings and out of those meetings, there was so much that progressed. You all did a lot with the website and the, and the questionnaire.
Tell me about kind of the work after those initial meetings.
[00:06:45] Speaker C: Yeah, so it was a bit of divide and conquer.
[00:06:50] Speaker B: That makes sense. So much to do. Might as well.
[00:06:54] Speaker C: Yeah. And being really focused on that early, early time period, I ended up with a lot of people that were working on that early identification piece. And so I remember sitting around and talking about, well, what are typical behaviors that we can flag.
We had a red flags kind of questionnaire that we were using. And so that provided some of that jump off point.
But then we had really healthy discussions about things like, well, how long is too long to eat right. For a child who maybe is just really struggling or if they only eat for five minutes, is that okay?
And through that, understanding that some of those characteristics at one age are completely typical behaviors and at another age would be a red flag. And so that then brought out again that complexity of oh, well, how do we make this age specific?
And then I remember we had a lot of discussions about prematurity. Obviously that is an area that I'm really interested in. And one of the things that parents may not know is that eating is a skill. And like all of the other developmental skills, babies often are learning that based on the age that they were supposed to be born. Right. So a corrected age.
And the research is pretty clear. When parents don't know that and they try to get a child to do something they can't physically do yet, that can really lead to very negative learning experiences. And so we added in that piece of, let's first adjust the age of the child based on their, you know, their premature status or not.
So it was, it was really interesting to try and think down through multiple layers like that.
[00:09:05] Speaker B: Yeah, I mean you approached it because it is, I mean we always say feeding is complex. And to figure out an infant and child feeding questionnaire that can be provided to help screen and help really a conversation around feeding. It is a complex tool because. So for those that don't know, the project that Dr. Ross is talking about is the development of the infant and child feeding questionnaire, which then ended up developing into the six question screener that exists and both are used today. But the long form tool is really helpful. It's 11 different questionnaires based on age. And so you mentioning that like you had to divide it based on age and developmental expectations based on age was really important. And then it does adjust based on. So it was, it had a lot of smart tool components to it.
And then it also. I really love that you all provided that anticipatory guidance for families as they're filling it out. Because it's.
I think that's when I became. I worked at Feeding Matters before I was a mom, but when I became a mom, that was the thing that like, blew me away. I was like, oh, yeah, there's nothing told to parents about what to expect.
[00:10:16] Speaker C: Yeah. And that was that. That came out pretty early, actually. And it wasn't just for families because the goal was to help with early identification and recognizing that pediatricians are, you know, like many people, overworked and don't have enough time to ask questions and, you know, delve into things. And so oftentimes they look at the growth chart and if the child's growing, they don't even ask questions about how our feeding's going.
And so it was designed to not only help families who had questions, but to give families, I don't want to call it ammunition, but more information so that when they go to their physician and they say, my child is not eating well, if the physician says, well, but he's growing, you know, whatever you're doing is great, they're able to say, but here it says it shouldn't take me, you know, 50 minutes to give my baby, you know, a feeding or a bottle or something like that. So it was very much designed as a, as kind of a two prong approach, one for families and one to help with physicians.
[00:11:34] Speaker B: Yeah, that's very clear. And I think a lot of families have leveraged that. The ability to say, it's not just me, me feeling this way here is hard, cold. Like this is from Feeding Matters website that says this. And I think on the physician side too, I think it allows them to have a better conversation too, because then they're talking about specific things versus guiding a conversation that maybe they were approaching around a feeling versus specifics around feeding.
[00:12:04] Speaker C: Yeah, I can get.
And it emphasizes that multifactorial piece. Right. And so it highlights a message that we continue to be highlighting today, which is that when children don't eat, there's a reason. And so we try to have a variety of the domains in one way or another part of that, that longer tool.
So that it wasn't just about growth, it wasn't just about the nutrition side of things, as one example.
[00:12:42] Speaker B: Yeah, no, that's. It's wonderful. And it's been so cool to see how it's evolved today. So it's in different. The screener versus the questionnaire in long form is included in a few different EMRs. Here in the United States and then also in different countries in Canada, they've really integrated into their electronic medical records and everything. So it's cool to see how that kind of evolves. And I know we still have so much work to do, and that's been part of this reflection on 20 years of like, we've come so far, but there's still so far to go.
We will be able to get feeding more integrated in well visits eventually.
[00:13:19] Speaker A: Yeah.
[00:13:20] Speaker C: And that, that. So when you talk about the iteration of, of the tool. Right. It. It. That's. That's progressively every year when we would meet, we would be kind of honing in on, okay, well, we have this tool and physicians want to do what's right. But how do we make it doable?
[00:13:43] Speaker B: Right.
[00:13:43] Speaker C: How do we help make it something that is part of, well, child visits? And it has to be quick enough, easy enough, but. But we also then have to do the work which I believe helped us to start thinking about PFD as a standalone diagnosis because, you know, we have to give physicians a way then to do something with that information.
[00:14:10] Speaker B: Yeah, we like to be part of the solution, not just pointing out some of the problems in it too.
Yep. Yeah. And I do believe that the cause that was kind of that first consensus work was really getting consensus on early identification, which I do think led to our next consensus of pfd.
What are maybe share with us like a memory or a particular project you're proud of or anything like. I mean, I know the ICFQ is certainly one, but any memories from working with Feeding Matters and any of the different consortiums that we had or working with Shannon and Chris or anything that comes up for you in these 20 years?
[00:14:52] Speaker C: Well, what I will say is that I have used the stories of the families so many times.
So many times when I'm working with the nurses in the neonatal intensive care unit in early intervention work that I do, because a lot of the teaching now that I'm doing is also kind of that first six months after they go home. So not just in the neonatal intensive care unit, but. But, you know, just helping people to hear the stories is very motivating.
And so many of the staff that I've had the pleasure of working with over the years, that's the feedback they've given me, is that when they were able to hear what happens when things go awry, that. That help them to understand how important it is to get feeding off on the right foot in the nursery.
[00:15:54] Speaker B: Right.
[00:15:54] Speaker C: That it isn't just get the food in.
But it's that earliest relationship and it's the way that babies build trust with the world and with their, you know, their family.
It's the impact of. Of medical conditions that, you know, eating well enough isn't. Shouldn't be our goal. Our goal should be to help babies and families have enjoyable feeding experiences.
Yeah, I guess that would be a big piece of it for me was the very first video that Feeding Matters put out when it was popsicle.
And how powerful that video was or for motivating, I think a lot of professionals to just work together, you know, Feeding Challenges.
People who work with pfd, we come from lots of different perspectives. And that's been another really challenging but very rewarding piece of with Feeding Matters is being able to really think about feeding from a completely different perspective.
Even if I don't agree with, is so valuable to be able to have conversations with other professionals. And so I think that has been another piece of that is just watching how Feeding Matters has pulled people in from, you know, all over the world, but also across all, all of these different disciplines. It's. It's been really, really fun to see Feeding Matters grow.
[00:17:54] Speaker B: Thanks. It's a.
That's the, that collaboration that I think is so important because like you said, even in that first meeting, it had many people coming from different settings. And even if you're in the same discipline, you still have a different perspective based on your experience and your current setting and the patients you've seen and your geography.
For us, we were always just trying to pursue who else do we need to make sure is at this table? And yeah, we're going to have some hard conversations at this table. And not everyone's going to agree, but we're going to find places to agree and how we can move the needle on this work.
But it's a huge compliment to all of you for being able to do that and push that and allow us to kind of help guide that work in partnership with you all.
[00:18:41] Speaker C: Well, and I think the other piece of that, you know, how deep and broad this PFD is, is that some of us work in outpatient settings. Some of us work in inpatient settings.
Some of us work to help babies and young children and older children come off of feeding tubes. Some of us are working well before that.
[00:19:09] Speaker B: Right.
[00:19:09] Speaker C: And so thinking about.
And it now leads into, you know, the newer campaign, it's not just picky eating. Right. So it's thinking about working with the picky eaters, trying to keep them from, you Know, going down the wrong road gives you a very different perspective than if you are in a setting where you're trying to help a child who has some skill to eat to transition off of their tube.
But we're all, now, I think we're all trying to work together and understand that continuum.
[00:19:49] Speaker B: Yeah. So, so true.
Now, so I got to meet you when it was like one of the conferences several years after that first conference, I think it was like 2015 or so, is when I was getting more interaction with everybody because I kind of fell into running the conference kind of last minute. And you are speaking at it. And I just love how everybody sits and listens to your.
Just your presentation because of how powerful of a presentation you have during that time. So that's just one of my favorite memories of yours, is at that particular conference when I got to meet you in person.
And then we've worked together since on so many different projects. And even now we have our documentary for those that are listening. We are creating a documentary to help raise awareness of PFD and ARFID and help bring that education forward that eating is a skill and it takes a lot to learn how to eat. But anything that you want to share
[00:20:50] Speaker C: on that front, Erin, on the documentary?
[00:20:54] Speaker B: Yeah. Or any. I mean, I guess any project. Anything that I missed either.
[00:20:57] Speaker C: Yeah. Well, I think one of the major messages we're trying to help people think about is when a. When a child isn't eating or when a family is struggling with, you know, having. Having comfortable Happy Meal times. There's always a reason, and it's almost never simple.
You know, feeding is a dynamic, constantly changing skill for both parents who are, you know, navigating this with their children and for the child. And so that bigger question of why not, oh, he's not eating enough, or not eating specific kinds of foods, or, you know, the parents are fighting during meal times.
Let's fix it.
It's really taking that step back. And that's what the screener helps with. That's what the, you know, the toolbox helps with, going through the different domains, trying to understand, well, what are the pieces?
And the screening kinds of tools in the toolbox really help to identify who else needs to be at the table.
Right.
Because oftentimes, I would say the vast majority of time, a single discipline standing on their own is not going to be able to meet all of the needs of the child.
And if anything, the pandemic, I think, has opened doors for so many people working more in isolation to reach out and find People on the Internet.
I live in Colorado and I have in my lifetime lived in Wyoming.
And certainly I've been in places where there's a lot of physical space between professionals and specialists and families.
And so, you know, recognizing that this is a complex issue and it's really in everyone's best interest to form relationships and understand how do you. How do you screen for things and then get them to the right people?
[00:23:13] Speaker B: Yep, exactly. The why behind it all. And that's what that framework helps with in looking at all domains.
Well, Erin, thank you so much for taking this time to speak with me. It's a huge year for us, and that's the collective us, not just those that work at Feeding Matters, but you've been so pivotal in helping us get to where we are today. And for that we're just really grateful.
Is there anything that I missed that you wanted to talk about? As we're kind of taking this walk down memory lane,
[00:23:45] Speaker C: I just wanted to reinforce that Feeding Matters is such an important organization because you have connected professionals and parents and you're kind of a one stop shop for many things.
Because there are so many people that I look up to that I listen to, you know, that the field listens to.
And we all like working with you. And so if you're a professional, it's a great place to go for resources and for families. I think so many families go on the Internet first and getting really good information that's been vetted by so many professionals is really a service to our world.
Because I know, because I have the privilege of teaching around the world, I know that Feeding Matters is around the
[00:24:47] Speaker B: world
[00:24:49] Speaker C: and people from all over the world are gathering information from you. So I just think it's really been fun to think about the progression from the earliest days to now, watching how big Feeding Matters has grown, not as an organization and number of people per se, but just in its presence.
It's been really fun. So thank you.
[00:25:18] Speaker B: Oh, that's so cool. It is that reach and I think you all have been big. Part of that is being our champions out there and getting the resources to those that don't. You're so right. With the Internet, there's just like information overwhelm and so hopefully we can be that vetted voice for, for families, for professionals. So thank you so much, Erin, and thanks for being with us these last 20 years. And I'm excited for the next 10, 20 years.
I am, yes, yes.
We always are working on solutions and so hopefully we will continue to do that.
So thanks for joining us today. And thank you all out there for listening on this 20th anniversary interview series. And we'll see you next week.
[00:26:01] Speaker C: Yes. Happy birthday.
[00:26:04] Speaker B: Thank you.
