Two Mother’s Stories of PFD and ARFID with Shannon Goldwater and Michelle

[00:00:00] Speaker A: Presented by Be Matters with host Jacqueline Peterson and Dr. Haley estrogen feeding does matter. [00:00:12] Speaker B: Hey, Haley. [00:00:13] Speaker A: Hi, Jacqueline. How are you today? [00:00:16] Speaker B: I am doing pretty well. I've got some exciting news to share. So how are you doing? [00:00:22] Speaker C: Yeah, pretty well. [00:00:23] Speaker B: Well, this episode that we have today is an interview that I got to do with our founder and emeritus board member, Shann Goldwater, who you know as well. She is the founder of Feeding Matters and mentor to myself and was mom to triplets that inspired the creation of Feeding Matters. I got to sit down and talk with her as well as Michelle, who is mom to 8 year old but soon to be 9 year old Hannah, who is more affectionately known online as the Arfid Girl as they share her experiences in trying new foods through through the Instagram page My Arfit Life. So it was an amazing chance to sit down with both of them because they are both so passionate. And while their stories are different, it just goes to show how similar some of the experiences of children and families are in this issue. And so what we're going to be talking about is this exciting collaboration between Feeding Matters and then Michelle's new nonprofit, Our FIT Awareness. And so the collaboration is an it's not Picky eating campaign that'll launch this week with the One Bite Challenge. [00:01:32] Speaker C: So the One Bite Challenge, can you tell me more about that? [00:01:37] Speaker B: Yeah. So it's already been online a little bit because Michelle and Hannah launched it with Dhar Mann. But we are going to be kind of relaunching it in this collaboration to be able to raise awareness of not only ARFID and avoidant Restrictive Food Intake disorder, but also Pediatric Feeding Disorder, PFD and all feeding disord disorders and differences. And it's a way to build empathy for our community, make sure that people who don't know about these issues have a little bit of a insight into them. And we are going to be doing this from Instagram. I know you're not like an Instagram fans or not as often on Instagram. [00:02:17] Speaker A: I'm getting more into it though. I am. [00:02:20] Speaker B: Yeah, you're gonna have to join us Sunday. It's Sunday, November 17th at 9am Pacific and 12pm Eastern Time. And so we will jump on. Shannon and I will jump on with Michelle and another board member from Arfid Awareness, Georgia. And we will take the challenge live. But then we will also be kicking it to special guests Hannah and Tallulah Willis and others to take the challenge in a way that fits them because as you and I know, not everyone can take A bite. And we want to make sure that this awareness campaign is inclusive for all. So super excited to get into this episode with you right now. And for this It's Not Picky Eating campaign because we know when eating is hard, scary, or hurts, it's not Picky eating. So Sunday, November 17, 9am Pacific, 12pm Eastern. And it's we're going to launch It's Not Picky Eating campaign. It's Not Picky Eating One Bite Challenge. And we hope everybody uses this chance to help us and join us in raising awareness and funds to support these efforts. Are you going to join us? [00:03:23] Speaker C: Yes. And others will, too. [00:03:24] Speaker A: Yes. Love it. Yes. [00:03:26] Speaker B: Perfect. [00:03:28] Speaker A: All right. [00:03:28] Speaker B: Well, I'm excited to get into it. Let's get started on the episode. Thanks, Hayley. [00:03:33] Speaker A: Okay. [00:03:34] Speaker C: Thank you. [00:03:36] Speaker B: All right, Shannon, thank you for being here today. I think it is so important for a lot of the community of Feeding Matters to know the background of Feeding Matters and the labor of love that it was to set this organization up for the long term for the world. And so I am excited to have you here today to share your story. So if you could start with us by sharing kind of your history with the triplets and then maybe lead that into how you thought about and started Feeding Matters. [00:04:10] Speaker D: Sure. So thanks for having me. I'm so excited to be here. I'm so proud of Feeding Matters and everything that you all are doing as an organization both locally and internationally and nationally. And it's a real testament, it's a labor of love when you start a nonprofit. And this definitely nonprofit was born out of my love for my children and the suffering that they endured and that we endured as a family. But, Jacqueline, you and your team just continue to take it to new heights. So just to step back in time, my name is Shannon Goldwater, and my husband Bob and I had trouble getting pregnant. And so we had in vitro fertilization and we put in two babies and we ended up with three. So doctors, third patient in 19 years to put in two embryos and get three babies. So my boys are identical twins. And then we have a little girl. So they're Megan, Will, and Lee. They're 22 years old now. They came into the world just four at 26 weeks and four hours, weighing 1 pound, 4, 5 and 6 ounces. At birth, my daughter had a prolapsed cord, which is what induced an emergency C section. And to be perfectly honest, I never even had any idea that people could have trouble eating. It never even crossed my mind. That's in part Because I'm. I have what most would say maybe is an unhealthy relationship with food. I don't eat to live, I live to eat. And so for me, I wake up at breakfast thinking about lunch and dinner, and I eat when I'm happy, when I'm sad. And so, you know, just having our kids survive in the nicu, there were calls in the night about them maybe not making it. They were septic, they had brain bleeds. They all were intubated for over 30 days. I mean, coming into the world that early is truly a miracle that they're doing so well and thriving today, which they are. But they had brain bleeds and all sorts of other things. And we were really worried about walking and talking and cerebral palsy and, you know, what will their future be like? And we didn't know that going home. But when we came home, little did we know that our biggest challenge would be feeding and swallowing. And so I was going to the pediatrician, and I was essentially being dismissed, that I was overreacting, that what I was doing was working because they were gaining weight. But I just knew in my heart that something was wrong. And I was doing. We were all doing extraordinary things. I realized that now we were exhausted. You know, it take them 30, 40 minutes to drink 2 ounces and then vomit it all up. They would arch and choke and gag and cry. They didn't want the bottle anyway. Eventually my pediatrician said, yes, let's get a speech path involved. And honestly, I was like, a speech path? Why would I need a speech path? They're not supposed to be talking. I mean, at this point, they had been. They were in the NICU for four months before they came home. So at this point, they're going on, you know, six months now that they've been home. Right. But they're really age adjusted. More like 2 month olds. I didn't know that. In many parts of the United States, speech and language pathologists are the first course of intervention for kids like mine. And thankfully, we were connected with a good speech language pathologist who said, I don't think these kids should be eating. I don't think they're safe to be eating. And she immediately reached out to the pediatrician, and we were readmitted to the hospital in December. So we came home in August of 2002 and readmitted in late November and early December, had a ton of tests done, found out that everybody was aspirating their lungs. None of them were safe to be eating. They all needed feeding tubes and they started with nasal gastric tubes, and basically a real nightmare ensued from that point forward because it seemed like the NG tubes made the feeding worse. And they were vomiting them out their mouth, and we had to hold them down and put them back in. And we were kind of now being introduced to GI and other specialists. And while everybody was trying to do the best that they could, we were being passed from professional to professional, and none of those folks were talking to one another. Right. So there was all individualized care. Anyway, around a year old, maybe six months. I don't know, about six months after having the NG tubes. I. And by the way, they went on to have gastric feeding tubes put in, and we did them. We spaced them out, though, because it was incredibly stressful. And then both my boys had fundoplications, which means they can't burp or vomit on their own, so they basically sew off the stomach. Well, what I didn't know was that just because you physically can't burp or vomit doesn't mean you don't try. So then I had two little boys who are constantly retching, trying to vomit what's been fed in them through this G tube, but just absolutely sick, sick, sick, sick. So I ended up finding out about a feeding program outside the United States or outside of Arizona. And they told me that they would, you know, put a whole team together with my kids specializing with them, and they'd work as a team and be inpatient. So we packed up and we moved across the United States to just outside in Baltimore. And we were in an inpatient program for three months. And unfortunately, my daughter didn't make any progress. We thought my boys made a ton of progress, but it was rough. I mean, it was choking and gagging and crying and not being able to wipe your kid's nose. And it was really painful to watch your kids suffering and only be able to say something like, take a bite. Good job taking your bite. Good job swallowing. But I really believed they were getting better. And so I did what I was told. But then once we got home, within six months, they had regressed even worse. Feeding them was even harder than it was before. And so I was on a quest to find more help and more resources. And I found another program that I went to, and it was during that program that I had an epiphany myself. So along this way, I got a lap band. And if you don't know what a lap band is, it helps with weight loss. And I was really struggling getting the weight off after the Kids. Well, when I was at this feeding program now in Virginia, I started feeling really sick. Like my children, actually, where one day I could drink water and be fine and be hungry, and the next day just the sight of water would make me vomit and I had excessive saliva, especially in the morning. And if anybody's listening to this and have children with feeding differences or adults, you know that the morning. I've yet to meet anybody who says the morning isn't one of the most difficult times when you have these challenges. And it was that way for me, too. And I thought I was being psychologically affected by my children, to be honest. And so did the psychologist at the program, who was really a godsend and became a good friend along the way. And I want to say, too, that regardless of whether a program worked for me or a speech path worked for my family or didn't, I know that all of these people had the best of intentions and they were doing the best that they could with the information and knowledge that they had at the time. And I know that I was. And that's a big thing for me because there's a lot of guilt about the things we did and there's never taking a break. Sorry, I get emotional when I tell this story, but you never get a break right from feeding your kids. And unlike other conditions where you go get a cardiac surgery or you go for therapy, the therapy is done there, the surgery is done in the hospital, and then you come home and it's recovery. But it's not that way for kids who struggle with eating, either because it hurts to eat, it's hard to eat, or they're afraid to eat. And the triplets ended up having all three, it was incredibly painful to eat. They had a hard time eating, which over the years led to serious psychological and neuropathic pathways laid that said, hey, just like burning your hand on a stove, I'm going to avoid this at all costs, and I'm not going to do this. This is painful. And I knew as a parent what was coming, you know, and we all dreaded it. So, long story short, they didn't do very well at this program. But I was so thankful for this program because those folks said to me, you know what? Your kids are sick. And clearly when they feel better, because they went on some medicine while they were there and they felt better, but they couldn't stay on that medicine long term. They said, what we do know is that when your kids feel better, they want to eat. And so we suggest that you go back home and Work on finding out what's going on medically and maybe use the tube more and do less feeding. And so I was, like, devastated. I mean, we'd uprooted our family, moved for four months this time, and, you know, to have them not come home, come home, you know, just as poorly as they were. Although my daughter was really eating anyway, but she wasn't drinking. But the boys weren't making any progression. So it's interesting how different programs do. Did different things for different children, but not really right, because we're all so unique. So I got home and I went to the GI doctor myself, my bariatric doctor, and I had lost, like, 20 pounds, and I was so sick all the time. And sure enough, I found out my lap band was actually slipped. And that is what was making me sick. And I mean to tell you, in that moment, I had this epiphany that, oh, my God, this is how my children feel. They are trying to communicate to us every day that this is not working. And if we keep doing the same thing, this is like the definition of insanity. And we need to do better. I need to do better for myself, for my family, for my kids, for kids that come after mine. So we literally spent, like, the next two years trying to rebuild a relationship based on trust, which was still really difficult because they still had to eat. Like I said, there's, like, no taking a break from eating. But for eight years of their life, there wasn't a single meal that somebody wasn't choking, coughing, gagging, screaming, crying, or retching. And some of these programs I came home from, and one's eating outside, one's eating at the kitchen table, one's eating in my master bedroom. There are six meals a day times three kids. They can't be in the same room. I mean, totally insane, totally not manageable for them, for me, for. And luckily, I have a lot of support. I'm a native in Arizona. My family is here, My husband's family is here. And that still wasn't enough, you know? And so I just went on a mission to start an organization. And so I met some other mothers. And we used to call ourselves the four Founding Mothers. And we met in my living room. And we wanted to start with parent to parent support. And originally we thought we wanted to bring the feeding program, so an interdisciplinary group of people together, working together, to Arizona, because we didn't have that. But we quickly realized after doing a business plan that that wasn't where we needed to be, that the problems that we're Having in Arizona, they're having in London, they're having in Australia, they're having in New York, they're having in Oklahoma. And that a lot of those programs really do belong in a hospital setting because these kids can be very sick sometimes and need a lot of specialty care. So my kids had a pulmonologist, an allergist, a gastroenterologist, a psychologist, so they can need swallow studies and endoscopies. And you know, you need those things from a large hospital. So we quickly changed the mission of our organization. Didn't change our name at that time. We actually wanted to be a center that made kids happy about going because all of our kids just would cry and scream when the therapist showed up, or we told them we were going to therapy. It was just very, very stressful, very alone, a lot of judgment. I saw your kid eat a French fry. What do you mean he can't eat? Well, one French fry is not eating and getting off a feeding tube. And you're seeing one moment in time, you know, as they aged. Birthday parties, food in the house, the smell of food, the sight of food. Like you just don't even realize how much food plays a role in your life until you face something like this. So essentially, we changed our mission, but not our name. And we wanted to further advances in this field and we brought together experts and that was the, really the huge start of what is today known as Feeding Matters. And it's thanks to our consortium and volunteers who listened and believed. But it was exhausting. It's still exhausting to explain to somebody when you have a child that has feeding differences, right? Whether they want to call that picky eating, which it's not, you know, oh, they'll eat when they're hungry. No, these kids don't eat when they're hungry. The happiest days of my kids life were the days when they had to fast for some sort of procedure. And so dispelling the myth, you know, having to fight for your kids and realizing like around the 10 or 12 year mark that we just weren't making enough progress. I felt like as an organization, even though we were doing so much good. So the first step was we changed our name to Feeding Matters because fast forward now I've learned all these things, right, about feeding development in general and how it's the foundation for which all your development's built. These are all things I didn't know. Like that helps prepare you to speak and develop facial muscles, helps you learn to hold a pencil by taking food to Your mouth, all these things. Right. And everybody has a different sensory system and heightened sensory. And it's the only thing you actually do that uses all your senses and all your organs. It's harder than walking or talking. And it's something that I think the majority of people really take for granted. But it's actually, you know, you have to derive pleasant experiences from eating to want to be internally motivated to keep doing it. And that is your body's way of protecting itself. Right. And so we have to be better at figuring out paying attention sooner. Right. And early intervention is a big part of that. So that's been a huge focus of Feeding Matters, trying to get. One of our first projects at Feeding Matters, aside from family support groups, was putting together an infant and child feeding questionnaire, which I know you can talk more about, Jacqueline, because there's been a lot of research put into that now over the years. But we need that integrated into, well, check visits. Right. We need there to be more questions than breast or bottle height, weight and head circumference, because you've got parents feeding their kids eight and ten times a day that should really only be eating four or five times a day. Right. These are extraordinary parents and caregivers doing extraordinary things to keep these kids thriving and growing. But they're real red flags, and we need to pay attention sooner so that we can hopefully lessen the longevity and severity of this disruption or these challenges in their eating development. Feeding development. And we call it feeding because typically it's at a time, you know, birth to five, six, when parents are responsible for feeding their children. Right. As your children age, they really take control and have a lot more exposure outside of your control. So that does definitely change. I can say that from experience now that my kids are 22, but that's why the name was feeding instead of eating. But we wanted to do more, and I just kept feeling like the system was still failing us. The same things were happening. There weren't more programs being developed that integrated the four domains that go into feeding. Right. Which is basically the psychosocial development of feeding. The nutrition that you're eating is a big part of feeding development. The medical part. Does everything work from your mouth all the way to your bottom? That's a lot of systems that need to be working. And then do you have the skill and ability to chew and maneuver the food in your mouth and what is your sensory system like? All of these things play a critical role. And most kids have varying issues in different parts of the development at different times. And Depending on their experiences. Right. And what their background is. So I feel like we needed a name. And so I went to you, Jacqueline, and the rest of the Feeding Matters team and said, people aren't paying attention to this. They're not paying attention to this because it is being treated as a symptom of 300 other conditions. So, like in our case, it was, well, your kids were premature. Well, I understand that. But there's kids with cystic fibrosis, kids with autism, kids with genetic disorders, kids with autism who are all struggling with feeding. And often that happened long before these other diagnoses came along. And they were kind of the precursor. And at the end of the day, I still need a team of people dedicated to identifying and treating this. We need best practices. It needs an identity of its own. It needs its own specialist. It needs to qualify for early intervention service. I mean, there's so much work to be done. We know how important nutrition is. So it seems to me if you have a problem, you shouldn't have to wait six months or a year to get in to be evaluated. And that is the case all across the world. And that is terrifying when you think about all that happens in development. So that's what we did at Feeding Matters, right? We brought that team of medical professionals back together and they wrote a paper declaring this its own diagnosis. And the name is pfd, Pediatric Feeding Disorder. And it includes all four of those domains we call them, right? All those things that have to do with feeding development. And it's amazing, right? And the CDC accepted it. And it has its own name, right? It has a code R63. But there's so much more work to be done. And in the same time that all this happened and all this growth was happening, there was this other condition that's been around called arfid, Avoidive Restrictive Food Intake Disorder. And quite honestly, today, my kids, my son would be considered having arfid. And I'm going to let Michelle, our other guest here, talk more about that. But we found Michelle and her incredible family and her daughter Hannah on social media, and we saw the difference that this little girl who has ARFID is making. And I don't want to speak for Michelle, but seeing the hundreds of thousands, quite frankly, millions of families and people and awareness that Michelle and her family are bringing to feeding differences, in my opinion, to Feeding Matters. I mean, at the end of the day, regardless of what it's called Feeding Matters, being able to eat matters, being able to nourish yourself, right? And so we reached out to Michelle and said, hey, would you talk to us? Because we saw that she was doing incredible things. And we have a lot of resources at Feeding Matters, and we're finding that many kids who have PFD at a very young age evolve into having ARFID as they get older. And while there are some kids that just solely have arfid, we really feel like ARFID belongs under the Feeding Matters umbrella. And we want to make sure that all kids are evaluated in all four domains and that, quite frankly, people are getting access to the resources and information that we need. And so how happy are we? We reached out to Michelle and her family and her husband Ben, and it has been a fast friendship. It has been moving so quickly. We flew out to LA to meet her family to learn more about her story. And I'm so excited about the things that we want to do collectively. I'm so excited for this audience to hear about Michelle's family and Hannah and their vulnerability to bring to share into a window that most of us never share because there's so much judgment around having a child with feeding differences, and it's just really special. So I want to pass it off to Michelle. And I know that was very long, and I'm sorry. [00:26:03] Speaker B: No, Shannon, that was. No, that was so good. Yeah, it was so good. [00:26:08] Speaker A: You set the bar so high, I don't even know where to begin. [00:26:10] Speaker D: Stop. It's true, though. It's so true. Everything I said is true. It's all, like, evolving, Michelle. Right? Like you coming in to our life, to Feeding Matters life, us getting to know your family. So I. Yes. I'm going to be quiet, and I want everyone to hear your fam about your family and your amazing story. [00:26:32] Speaker B: Yeah. Michelle. [00:26:33] Speaker A: Thank you guys for having me on here. I'm so excited to partner with you guys and make amazing changes in the world when it comes to Feeding Matters. So I have three kids. My oldest son, Jacob, is on the spectrum. He does have an autism diagnosis. And when he was younger, he had. Well, when he was a baby, feeding was always difficult with him. He had a lot of acid reflux. We tried different medications. There was a lot of spitting up. Took forever to feed him. I watched all my other friends who had young kids that were the same age, and they would, you know, finish the bottle within 20 minutes, and we would be sitting there for an hour, and then by the time we would finish the bottle or attempt to finish the bottle, the formula had gone bad. We had to make a new bottle. So there was a lot of waste of formula because he could never finish his bottle in one sitting. And so I just assumed, you know, he's a boy, colic, this is what they, everybody talks about. And that he would outgrow it. Which eventually that did get better. But when we transitioned to solid food, it was an even bigger challenge. He gagged and choked and threw up pretty much anything that had textures. Did not like baby food. We decided to try to give him, you know, more solid foods like the little puffs. That didn't work. And so we went to the doctor. I expressed my concerns that he, and he was never underweight. He was a very healthy sized baby. And so that's the first thing that usually the pediatricians will look at as well. He's growing at a normal rate. He's, you know, he's a heavy or, you know, a hefty boy. So it's your fault. You're feeding him too much milk. Stop giving him milk and give him, you know, normal food. And he's going to eat if he's hungry. And I explained, well, he won't like, he can't, he's, he's throwing up, he's spitting up, he's gagging. So he started receiving services for early intervention. At the time, we did not have a diagnosis and they were just assessing him and offering him support in all the areas that he needed feeding, being one of them. We did occupational therapy with a feeding therapist. And he made so much. Sorry, I got a backup. So for. Until he was three, he refused food completely. He was unable to eat anything that had textures or just food in anything other than liquid. And so milk was his primary source of nutrition. And he was drinking a gallon of milk a day. And again, we were getting a lot of pushback from our doctor saying that, you know, you have to stop, stop giving him the milk. And I tried to explain that he, he won't eat anything. Like, he'll literally starve. And she said, trust me, if he's hungry enough, he's going to eat. And I remember the judgment that I would get from everywhere, because anytime we would show up anywhere, we literally had like a small mini refrigerator just packed with bottles of milk. And people looked at us like we were crazy. Like, first of all, why is your child drinking out of a bottle? You're not supposed to use a box bottle after the age of one. And second of all, why is that all he's eating? That can't be good for him. And so we were doing feeding therapy through an occupational therapist. And I could not believe the progress he was making they were so successful at. You know, he. He loved rewards, and so rewards worked with him. And she got him eating. You know, it was a process, but I just. I couldn't believe it. I mean, she was introducing fruits and vegetables, and he slowly but surely started to eat them. And the doctor said, you know, that kids grow out of picky eating around the time that they turn six. And so that's kind of what I was holding on to. And sure enough, that's exactly what happened. And I was thrilled. He was still, you know, particular with what he liked and didn't like, but he was eating a variety of food from all the different food groups. He will try anything. You know, he still knows what he likes and what he doesn't like, but he's happy to try things. He's not anxious about eating food. He's happy to eat food. And so that experience caused a lot of trauma for me personally as well, just when it came to feeding. And so when my second son was born, I also approached the whole situation very cautiously, and I was terrified. And he also had a lot of the gag reflux and. Or the acid reflux issues. And he was also on medication. And when we started to introduce him solid foods, he thankfully ate. And so I thought to myself, oh, thank goodness, you know, I don't have to go through this again. And then when Hannah was born, she was a great eater. I actually always said, wow, this is finally my first child who can eat a bottle and have no issues. There's no spitting up, there's no acid smell, there's no yellow stains on, you know, every piece of clothing that I own. And I was just, you know, I thought, okay, maybe because she's a girl, you know, like they say, boys have more of the colic. And then when we started to introduce solid foods to her, she would pucker her lips, cover her mouth, you know, push it out of our. Out of my hand, just refuse to open her mouth to eat. And so we would often. And when we transitioned to whole milk or whatever it is, after the formula was done, she drank it one time and that was it. After that, she refused. She would not drink milk at all. And so we just kept offering her a variety of things that most people offer as baby food. And whatever she was willing to eat is kind of what we continue to give her because we needed her to eat something. And again, you know, I was under the impression that she'll grow out of it. This is what everybody tells you. This is what happened with my oldest son, I just have to be patient, and in the meantime, just feed her whatever it is that she's willing to eat. And so that went on, and she was growing at a normal rate, and so I wasn't too concerned. And then Covid started, and she was about 4. And I should also add that all of my kids had early intervention as a way to just more for preventative reasons, because we did get an autism diagnosis for my oldest son. And so I just wanted to keep an eye on the other two to make sure that they were developing the normal, you know, development. And so Hannah received services as well. She did speech, you know, so she was assessed for all of the typical things that, you know, we see with feeding disturbances, like tongue tie, lip tie, swallowing issues, all of these things. And so, you know, they. They would just say, some kids just are picky eaters. And so when she was around 4, Covid started, and everybody's life changed. And I know that it made a huge change for us as well, especially when it came to Hannah and eating. And I decided at the time that I'm starting to get very concerned because all the foods that she was willing to eat, which was a handful of things, she's all of a sudden decided she didn't want to eat those things either. And so her diet pretty much consisted of goldfish was one of the primary things that she was willing to eat. She did drink a yogurt, a Danimal's yogurt, which I was happy about. And all of a sudden she decided she didn't want that anymore. She was willing to eat quesadillas. And so I thought, okay, well, at least, you know, there's cheese. She didn't want to eat that anymore. She was willing to eat those dino nuggets. So I was like, okay, there's protein. All of a sudden, those were bad, too. And I couldn't understand, like, why all of a sudden is she not liking them? And this is the thing that I was always asked, but I thought she liked this food. And I'm like, yeah, I thought so too, but she refuses to eat them. So. And she couldn't tell me why. And so I had no idea. Why all of a sudden is she. Is she tired of them? Did she eat too much of them? Like, what. What's. What's the issue? And so I decided, you know, let me give my occupational therapist to call the one who treated my son, because I know that there was such a positive outcome from that. Maybe we can do this for a Few months and she'll be on track like my son. So we started seeing the occupational therapist, and it was a completely different experience with Hannah. The rewards did not matter for her. I could tell the story, stress that she had, because like any child, of course, she wanted that opportunity to play at the end of her session. But the work that she had to put into to have that chance to play, she couldn't do. And so it was very discouraging for her. It made her really sad. I could see the stress in her face when she was being, you know, forced to eat the things that we were asked to bring. I tried not to let my emotions get the best of me because I knew this was for the greater good and that this is just what needed to take place in order to get her eating. But then it caused so much anxiety at home. And every time we would have to go to session the night before, she would break down into these panic attacks and cry. And I still made her go because I thought, you know, this is going to be the only way we can get her to eat. And then I said, you know, I can't do this to her anymore. I can't do this to her. I can't go through this anymore. I'm just going to ride it up. I'm going to wait and hope and cross my fingers that when she turned six, this is all going to go away. And I'm just going to let her live off of goldfish if that's all she's willing to eat. And so that's kind of what happened. And things just continued to get progressively worse. She couldn't handle being in the same room with us when we were eating. She couldn't handle the smell of certain foods. You know, if we were at somebody's house, she didn't want to look at food. And so she would. We would see that she would be eating her goldfish in another room, like you said, Shannon. She would be, you know, eating in the bathroom or eating in her bedroom or eating outside anywhere so that she didn't have to see other people's food, smell other people's food, or, you know, any of that. And we were constantly, you know, I was bringing this up at the doctor constantly. I was very concerned. They weren't too concerned, but they did do testing. They checked her bone age to make sure that she just wasn't petite. And that was. The other thing is, around four, is when her growth really, really slowed down. And so she wasn't gaining weight and she wasn't growing in Height either. We were referred to a bunch of specialists. We saw an endocrinologist, we saw a GI doctor, we saw a new nutritionist. And they all kind of said the same thing, like this happens, it's very common, she'll grow out of it. If she's willing to eat ice cream 10 times a day, then we'll be happy if she eats ice cream ten times a day. And I'm like, but she won't. And that was the other thing that really made me realize that this doesn't appear to be picky eating. Because when you think of a picky eater, you think of a child who would choose to eat cake over a piece of chicken, which is, you know, many kids are like that. And with Hannah that wasn't the case. I couldn't even get her to eat cake or chicken nuggets or macaroni and cheese like the foods that most kids enjoy eating. She refused all the time. So we saw all of these specialists and nobody had answers for us other than the fact that you just gotta wait it out. She'll eventually start to eat when she's hungry. You know, the same things we had been hearing. And I started to grow really concerned because all of a sudden now she was having issues. And she was constantly complaining that her stomach hurt, she didn't want to go to school, and she stopped wanting to go to birthday parties, she stopped wanting to go to girl scouts, she stopped wanting to go to her grandparents house. And I couldn't understand, like this was a kid who always seemed to be very happy and all of a sudden, you know, she loved to be around people and all of a sudden now she's just refusing to go anywhere. And I wasn't understanding why, what was going on. And she would say things to me like, you know, I am going to miss you when I'm at this birthday party or it's boring at grandma and grandpa's house or you know, I just, I like to be with you. Which, you know, I thought, okay, like she's attached, kids become attached. And then it wasn't until she. One day we were driving to the Chick Fil a drive through and I asked her in the car, which was, you know, a very common conversation in our house is what does everybody want for dinner tonight? And it's my most hated question. I hate that question with a passion because every person in my family will have a different response. And you know, you see these families where they cook dinner and everybody sits at the dinner table and everybody's eating the same thing. And you're like, wow, that is so beautiful. And I've never been able to experience that. And that is my dream, that one day I will. And so I asked Hannah, like I always did, Hannah, what would you like from Chick Fil A? And in that moment, she broke down, and she started crying, and she said. She asked me and she said, why is it that every time you talk about food, it makes me very anxious? And I stopped in my tracks right there. And for the first time, I finally realized that this is a problem. This has nothing to do with picky eating, that there is something so much deeper than this. And I can't believe that I had no idea. And here I am forcing my child to do therapy and eat things that make her uncomfortable for whatever reason, and this is the answer. Something is wrong. And so I started researching, and I had heard of ARFID because we knew somebody who had a situation, but it was completely different than Hannah's. Theirs was based on. It was a trauma. It was an event that took place, which I don't remember any traumatic events taking place. I don't remember, but I don't know. And I started doing a ton of research to find help. And I know that because the help that we were getting was actually doing more harm than health, I was very concerned and adamant about finding help that would actually help her. And so I started calling around. I started calling psychologists and asking them if they knew about this condition. And most of them said no. And they would refer me to call somebody else, and then I would call, and they would say, well, because ARFID is classified as an eating disorder. And so. And treatment for ARFID looks very different than it would for, you know, just a child who's getting, you know, feeding therapy. And so most. When you think of an eating disorder, you think of an adult or a teenager, not a child. And so therapy looks very different for a child versus a teenager. And so many of the people that I spoke with said, we, you know, we don't see kids. We only see, you know, adolescents or adults. And so after calling probably over 50 therapists, I finally found a therapist who specifically dealt with arfid, and she treated children. And from the moment that I had my first conversation with her, I felt so awkward just even explaining Hannah's situation, because I felt like what I'm gonna say makes no sense. And I felt stupid that I could even say this out loud. But I remember saying to her, like, she will only eat the Pringles, the sour cream and onion pringles but they have to be in the individual containers. They can't be in the big containers because she says that they taste different. And I know that they're the same chips, but she's telling me that she can taste the difference. And when that therapist validated me and said to me, this is completely normal and this is classic, it made me feel so seen for once. And I thought to myself, okay, we have to see her. And the problem is this therapist happened to be out of state, and so our insurance wouldn't pay for it, so we had to pay for it ourselves. But I was desperate because I needed to help her. At this point, she had fallen off the growth chart. She wasn't gaining weight, she wasn't growing in height, and she was on the verge of needing a feeding tube because she could not supplement her nutrition. And her goldfish, I mean, her goldfish. Her diet consisted of mostly goldfish and Pringles, and that was it. And so we tried to get her to drink the nutritional supplemental drinks just to at least give her, you know, some nutrients, but she couldn't because of the texture. She could not, you know, tolerate getting the texture down. And so we started seeing this therapist, and the therapist started having her drink this nutritional supplement. And it was a struggle, but I knew at this point, like, we had to do it because it was either that or a feeding tube. And Hannah was very aware, and she was terrified of a feeding tube. And so you could see her willingness to do it, even though it was so difficult for her. And so we were trying to find creative ways of how we could get her to drink this nutritional shake. And she couldn't drink, you know, the eight ounce nutritional supplement in one sitting. And so we would have to do tiny amounts, like an ounce at a time. And just to get her to drink that ounce could take an hour. And so I started thinking of creative ways, like, how do we do this to make it fun for her? How do we encourage her? How do we motivate her? And one of the things that had worked when she was doing ot, despite the fact that she hated it, was we would say, you know, let's take a picture of your plate before and after you eat so we could send it to your therapist and she'll be so proud of you, or let's take a video. And so we have, you know, so many videos and photos of her when she was little, of us, you know, me taking photos and videos and sending them to her therapist, or not sending them to her therapist. But Hannah thought We were sending them to her. And so in that moment, I said, you know, why don't we take a video of you drinking this and let's send it to your therapist? And so we did that. And five minutes later, she said to me, mom, let me see. I want to see. Did you send it to her? Did she reply? And so at that point, she was actually aware, you know, that she was waiting for a response. And so in that moment, something triggered in my mind, and I thought to myself, you know, if this is what's working for her, why don't we try to get her to try new foods on video? And this way, it'll be great so that my family and my friends, who have never understood what we've been dealing with, will follow along and support her and learn. And so I suggested it to her because she's always loved to make videos of herself, and she loved the idea. And that's how we started. I. On that first day that we started the account, I. On my personal account, I sent a message to all of my friends and family, and I said, hey, follow Hannah. She wants to share her journey with you guys so you guys can support her. And that's how it started. And within a few days, it just went viral. And I was shocked because I had no idea that people were. I was trying to understand, like, what. What is it? Like, do people have the same thing? Like, why are people so interested? And before I knew it, I realized that there were so many people out there who were having feeding challenges, whether it was arfid or whether it was something else. Just a child who struggled to eat. There were so many feeding issues out there, and we would be places, and women in their 60s would come up to me and say, I follow you guys. And I finally have a name for what I've dealt with my entire life. And I've always been called a picky eater. And all of a sudden, I feel so seen. Like, I understand now that I knew that it was more than just being a picky eater. And now seeing her, you know, Hannah be able to explain everything that she feels and thinks when she's trying new foods really, like, makes me feel understood. And so I thought to myself, like, wow, you know, I have this massive platform with so many people who are following, and there's so many people who are affected by this. What do we do with it? And I started looking, and I knew from my own personal experience that finding help was so difficult. And it just felt wrong and unfair because the fact that there's so many others out there like her. And there's very little to no support, let alone, you know, people knowing that this is something that exists. It was very disheartening. And I decided, you know, well, if there's so many other people out there like this, they could probably benefit from, you know, knowing that there's support and resources out there and we have to be able to find a way to put all of that together. And so I started looking into nonprofits, and there's plenty of eating disorder nonprofits, but none of them focus on arfid. It is a newer diagnosis and it's very different than the other eating disorders. Whereas ARFID has nothing to do with body image. And I thought to myself, well, you know, if there's such a need, but there's no support for people like, we have to do something about this. And so we decided to start the nonprofit ARFID Awareness and in hope that we can do more fun research, support people with resources, and, you know, do anything to help bring community together and to provide help and answers for others like us. And then we met you guys and when we heard your mission, which was completely in line with our mission, it pretty much word for word the exact same thing. And we, you know, I met Shannon and heard Shannon's story. There was just so many similarities and so much overlap. And at the end of the day, whether it's arfid, whether it's pfd, feeding matters to everybody. And like, you know, I've said before, it doesn't matter if you're a six month old baby that has feeding challenges or Whether you're a 90 year old, you know, adult that has feeding challenges. Feeding matters for everybody. And so I think it's really amazing that we are coming together to raise more awareness and, you know, bring people together, make a community, make people feel seen and heard. You guys have so many amazing resources and so we're very excited to partner with you guys. [00:53:01] Speaker D: Oh, so cool. Michelle, thank you for sharing all that. And I really want to circle back and just give the audience an update on my kids. And I'd love for you to share, Michelle, if you're comfortable. Because following Hannah's story, I just think it's amazing her journal and how much not only has Hannah helping the world, but how much confidence this experience is giving Hannah to try new foods and that, you know, there is no right or wrong way. Right. And eating is so personal. So I just want to fast forward. The triplets are 22 now, and Megan, my daughter, had her feeding tube out just before her 10th birthday. And my son Will had his out just before his 16th birthday. And their brother Lee still has his tube, but I have no doubt one day he will get off of it. But unfortunately, a lot of like what you're describing with Hannah. There's only certain foods that Lee likes. Most of them have very little nutritional value, if any. He burns out on them. And so he's unable to maintain his weight without supplementing with the tube. But they're all thriving and they're seniors in college. And some of the things that I've taken away from this experience, fast forwarding to 22 years later, is that common sense so often goes out the window for kids like ours and families like ours, and that we're doing such a disservice by not having better research and support for families and these kids themselves, because one program that works for one family doesn't work for another, and vice versa. And I ended up spending and my kids over a year of their lives in the first three years at different programs throughout the United States. And we need to change the narrative about feeding and its importance, but also when there is a disruption to what would be deemed traditional or typical feeding development, or maybe that disruption, as you said, happens as an adult. And we're seeing more and more of this. We need to pay attention. It really matters. And I think that we can do really great things together. And I love the platform of support that you've created by Hannah sharing. But also I have really enjoyed seeing Hannah. She has a notebook. I love it. So I don't know if you'd feel comfortable sharing, but I just wanted to share that. And I wanted to say that with my kids. There is no magic answer. I can't tell you like something cured them. This program did it. There have been so many people along the way, different professionals. What I do know is that internal motivation comes from feeling good. Whether that is because you're no longer afraid, because it no longer hurts, or because it's not hard. It takes figuring that out. And that's complicated. And that can take a lot of time and people and experiences. And it's a lot. It's a lot for families. But I know that together with better research and education and screenings and better covered services that we can get, we can have foster and lessen the longevity and severity when people face these challenges in feeding. So anyway, that's. That's kind of wrapping up where we are today. Except to say that now the triplets are serving on a consortium at 22 years old for feeding matters and bringing a different voice than one that I could bring. And. And so it'll be interesting to see how Hannah's story evolves and quite frankly, your whole family, because I feel like I've evolved, and I don't know how you would speak to that yourself, but I feel like. And I hate to use the word regret, because like I said, every choice I made, I made with the in the best place. And so much thought went into it. Right. Even though it maybe wasn't the best choice now. But my biggest regret, I think, is not enjoying my kids. Was trying to fix my kids. And they're fine. They're fine. Just because it didn't go like it did for everybody else, that's okay. And I wish I would have enjoyed them, enjoyed where they were. And quite frankly, in my case, and I know we're one very big end of the spectrum with needing the tubes. They definitely needed the tubes to survive. Like you said with Hannah, they couldn't get enough nutrition. Just the sight and smell caused so much vomiting, and we just. We couldn't get the weight on without the tubes. But I guess what I was trying to say is that it's okay they got there, and Lee's not quite there yet. And if Lee never gets there, that's okay, too. They are thriving, capable, brilliant kids that have so much to give to this world. And I feel like I've learned so much. They've taught me so much, and I'm so thankful, even though I would never. I, honest to God, I would go through the NICU a hundred times over, and that includes calls that they might not make it, then go through the feeding challenges that we went through the first eight years of their life. Like, it takes you to your niece, and it is really has a lasting impact. And I want to see that change. And I know you do, too. So I would love for you to share about where Hannah is today, now that we're through Covid, and she does have this huge following and just her family as a whole. And how you've evolved, I think, because I feel like you've had just very different experiences. Right. But there are so many similarities. Right. It still controlled your life. It still matters so much. [00:59:48] Speaker A: Yeah. [00:59:48] Speaker D: We still want our kids. [00:59:50] Speaker A: Yeah. So one of the things that I realized is eating is one of the things, the only things that we can control. And so children oftentimes feel like they have no control over anything. You know, the parents decide what they're doing, what they're you know, what they're wearing, where they're going. And so they can't control those things. But whether they're willing to eat or not is something that they can control. And I found that the more that we would pressure Hannah or, you know, suggest things, push her to do things, force her to do things, because like you, Shannon, there's so many things that I did when she was younger that I look back on. And I, you know, don't want to say that I regret it because it brought us to where we are now. But at the same time, I wish I had known all of these things back then so that we could, we could have prevented, you know, all of that trauma that it caused to get her to where she is now. But one of the things that I found very helpful since we started this whole journey is it's been led by her. So she's in complete control over what she chooses to eat when she feels comfortable doing it. And she has herself established this three bite rule that she decided she wanted to do on her own. And the way that that came about was she said, you know, when I'm trying a new food, there's so much fear involved that when I'm taking that first bite, that's all I'm focusing on is how scared I am. And so I don't even think that I even taste the food entirely because all I'm focusing on is what's going to happen, how am I going to feel afterwards, am I going to be okay? And so she said that that first bite is always the hardest. And then when she goes on to the second bite, it's still hard, but it's a little less hard because at least at this point, she already knows the main things of what to expect. And so she feels like she can be more open minded when she's doing that second bite. And then the third bite is just like that, you know, it's a little bit easier. And at this point she feels like she really has a more clear mind to really decide whether she likes it or not. And so watching her confidence soar in these last, what has it been, nine or ten months has been incredible. I mean, she's a completely different person. She's so much happier, she's so much more full of life and she's just, she feels so empowered that she's been able to challenge herself and face these fears every single day at her will. And so she, it's really changed her life entirely. And you know, one of the things that, you know, everybody's journey looks different and not everybody's ready to be in the same place on their journey. And that's totally okay. And it takes, you know, a different amount of time. Some people can never get here. And that's okay too. It is. But one of the things that I want people to understand is it's not something that changes overnight. It's a process, and it's a long process. And we're super thankful that she's tried. I think at this point, close to 300 foods this year, which is fantastic. But the reality is, I want to say 98% of those foods, even if she did like them, are foods that she has not been able to eat again since. Because anxiety is real. And just because she tries the food doesn't make the anxiety go away. And so it's a process. But the fact that she's willing to be open minded and face these fears and experience different textures, smells, feelings, realizing that she's safe, she's okay, nothing is happening. Yes, she may still gag. Yes. Once in a while, she may still throw up, but she realizes that she's still safe. She's still. And I think that that has, it's been, you know, it's given her so much power to see that she can overcome anything. And so therapy has definitely been a huge part of all of this and learning, you know, the coping tools and the DBT skills of all the psychological aspects of things. But it's been really amazing to see her thrive. She's gained five pounds this year and she has grown, I want to say, three and a half inches. And so it's. It's incredible to see her growth. And it makes her feel good because she finally feels like she sees the physical part of it also where she's actually growing, which makes her feel really good and makes her want to continue to keep going. So the community and support, I have to say, has been a huge part of all of this. There is no way that we would have been able to do this on our own. You know, it's one thing when you're doing something for your mom, it's another thing when you have all these other people who are cheering you on and making you feel so strong and brave. And then you have other people telling you that, you know, you're inspiring them to go outside of their box and to try things that they would normally wouldn't have tried. And so I've also was able to meet a lot of wonderful people through this who have arfid prior to this. We knew we didn't know a single person with Arfid. And so since we've started this, we've met people with Arfid. And watching the dynamic between people alike together and the inspiration that they give one another is truly remarkable. I don't know if they rub off on each other or if they support each other or it's some. I don't know what it is, but it's truly incredible to see what community and support does. It's been amazing as a mom to find other moms who get it. I mean, that was one of my biggest challenges as well, is the fact that I felt so isolated. I felt like everybody thinks it's my fault. Everybody thinks that I'm the problem. Everybody thinks that, you know, she's the problem. You know, people always wanted to point fingers at somebody, and I always. Even though I knew in my heart that there was nothing more I could do, that I've literally given my children everything that I possibly can. It's amazing to meet other people who get it and understand. And so I love the fact that, you know, it brought us to you guys and that there's so many more people out there who understand. And I just think it's amazing to get everybody together and make a difference, because feeding matters, you know, from the beginning. [01:07:08] Speaker B: From the beginning and that. Yeah, go ahead. [01:07:10] Speaker D: Sorry, Jacqueline, go ahead. I wanted to just say a couple things about what Michelle said. [01:07:16] Speaker B: Yeah, no, go ahead. That's fine. [01:07:18] Speaker D: Well, first of all, there are two things you said that just really, really resonate with me. One, I just want to remind you how extraordinary you are, because I really believe, like, despite all the stress and all the worry and all the heartache, because it's really tough, right? Watching your kids suffer. Right. I mean, not right. I just feel like there's a bigger purpose here. I have met the most amazing people because, unfortunately, of my kids. Feeding issues, because of feeding matters, because of people like you. And I just. That means the world's going to be a better place because we're willing to stand up and make it better and try and be a voice for our kids. But you said something about Hannah that I think is just really true of all of these. Anybody who struggles with any type of disordered eating, feeding is them leading the way. And I know that is so, so hard for us. But whether it's because they're afraid, it hurts or it's hard. Right. It's really real. And us pushing and forcing at a timeline of our own only makes it worse. And I personally Believe that it's your body's defense mechanism telling you like, no, don't do this just the way it does with the hand on the stove. And I never finished about my lap band. So I had my lap band removed, by the way, when I got back from that program. And I gained like 40 pounds in two months. And I went right back to feeling good and loving food again. And I mean to tell you, when I was sick and that band was slipped, but I didn't know it was slipped. I was so sick, I was so repulsed by food. And I really believe our kids, adults, whenever somebody's afflicted this way, they are doing exactly what their body is telling them. Right, wrong or indifferent, you know, they're not doing it because it's enjoyable. Right. To gag or choke or be afraid. Like, nobody wants to live their life that way or miss out on the birthday party or be the kid that doesn't want to tell anybody. You know, lots of my kids friends didn't even know they had a tube growing up. And I want to see that change, you know, So I would love. I love Jacqueline as the CEO of Feeding Matters, to share more about how she's bringing us together, what Feeding Matters is doing, and all the exciting things we're going to work on together, we hope are going to bring better resources, better research, education, and all the things that we all want collectively together. [01:10:21] Speaker B: Yeah. Thank you, Shannon, and thank you, Michelle, for sharing your story and just the amazing journey that you've had. And I'm sure it feels like a whiplash season that lasts like nine months. It is 10 months. It's got to be like whiplash. And so I think for us, the part about your story that I almost feel great responsibility for, and I think I was sharing with this with you on our last meeting, is if we're here as Feeding Matters for families and we're here for professionals, if you find the ARFID diagnosis, knowing that those are the very similar or same population as children with PFD because of how much they overlap, we were leaving so many families behind because they weren't able to find us because we didn't have as much information out there about arfid, we didn't make sure that we had the door open. And we're collaborating with the ARFID population and especially the eating disorder population. We were kind of stuck in our pediatric feeding world. And we, you know, we thought in creating pediatric feeding disorder, we were building on arfid, and we thought it would stay in the pediatric feeding world. But I think it took us by surprise how fast the eating disorder world was able to research it and get a lot out there. And that's so great. And I feel like the pediatric feeding world can learn from that side of things. And that's why it was really important for us. When I, you know, talked to Shannon about, we need to make sure Michelle's aware of pediatric feeding disorder. And maybe we can do this together. Because you, like we said, our missions are very similar between ARFID awareness and feeding matters. And there's so much that needs to be done that we have to be able to do it together. Every story is different. Like you saw with your children. One provider worked and the same provider didn't work for Hannah. And so, and Shannon, you referenced that as well, that we need to find what are the best answers to be able to support families, to be able to identify this early and research it and identify these best practices. [01:12:30] Speaker A: One of the things that I forgot to mention also is that we're also learning with Hannah that she's teaching us that we're very fortunate that she has a voice and that she's able to articulate how she feels and, you know, what she's feeling and why, which has allowed us as her parents to really understand what is going on internally, things that we can't see from the outside. And I feel like there's a lot of people who are not able to vocalize that or express those things or even put the pieces together to make sense of it. So we've learned a lot from her. She's teaching all of us. And I think that's really amazing is that she has that voice for so many that don't have one. [01:13:24] Speaker B: I agree. That is amazing because she is that inspiration and especially so young to be able to articulate exactly what she's feeling. I think it's very special, and Hannah's special because of it. [01:13:37] Speaker A: And look, to be honest, like going back to, you know, Hannah's childhood and how things started, maybe they started as PFD and developed into ARFID through the triumph trauma and, you know, the forcefulness and all of those things, I don't know. But, you know, the fear of throwing up is one of Hannah's big issues, which is why it was more diagnosed, I think, as arfid, because it's a genuine fear. And the textures play a big part of that because they make her gag, which makes her afraid that it's going to cause her to throw up. And if she starts to throwing up, it Goes on for hours. So it's, you know, it's really tricky. But I do believe that, you know, yes, every child experiences anxiety to some degree. We all experience anxiety. But is it enough, you know, at the age of three, to make a diagnosis of ARFID based on this psychosocial aspect alone? Like, I don't. You know, I. I was able to come to that diagnosis with Hannah because she was able to vocalize exactly what it was making her feel like, and that was very helpful in getting the diagnosis. But, yeah, there's definitely a lot of overlap. And at the end of the day, we need early intervention, and we need more screening, and we need, you know, kids to be assessed right off the bat. There shouldn't be situations where kids have to wait years to find answers, because then it can only create more trauma, which can lead to ARFID and other things, other eating disorders. [01:15:25] Speaker D: And so it's interesting you'd say that, because I talked to Lee about this after I met you. Right. He's 22. The boy who's still on the tube. [01:15:33] Speaker A: Yes. [01:15:34] Speaker D: And I was explaining to him about arfid, and they're talking about it on your consortium, Jacqueline. They are, but in his standpoint, and everybody's different, Right. And these kids, these next generations, are gonna tell us a lot. Right. Like, for him, it's like, no, I think there's a lot of negative connotations with eating disorder. Right. I think people in the eating disorders community would tell you that. Right? [01:16:01] Speaker B: They do. They do. They say that there is a stereotype that they would like to. [01:16:05] Speaker D: Right. And so sometimes you get people pegged in something. Right. And that's my big concern is that kids get. At whatever point the onset is, is that we're looking at all four of the pieces that make up. Right. What could be interfering or. Right. Causing harm to what was once normal eating patterns, behavior, or. In your developmental piece. Right. Since we know that this is happening in adults and two. But anyway, Lee said, yeah, I get it. I would probably meet the definition of arfid. But, mom, like, I had years of suffering. Like, that's why I'm the way I am. You know, because for eight years, there wasn't any food that didn't make the kid gag or retch or try to vomit, and he couldn't vomit. You know, like, it's real. Right. It's. [01:17:00] Speaker A: Well, it's like ptsd. [01:17:02] Speaker B: Yes. [01:17:03] Speaker D: Yeah. [01:17:03] Speaker B: That's a great metaphor for it, Michelle, because it is. It's that buildup of trauma. [01:17:08] Speaker A: Yeah. [01:17:09] Speaker D: And I do believe forcing and pushing that we worsen. Right. [01:17:15] Speaker A: The condition we were doing what we. What our instincts told us. Right. That's what they told you of our children, is what's primary. And we're going to do whatever that takes. And this is what we were taught as kids when we were growing up. And, you know, it's that generational curse that we're trying to stop. Where your parents would make you sit at the dinner table. I mean, I remember my grandma saying to me, this isn't a restaurant. We don't have a menu. This is what's for dinner. You either eat it or you go to bed hungry. Those were your options. Thankfully, I didn't have any issues with that. And so half the time I didn't like what it was because it was ethnic food. And I would just be like, whatever, I'm not eating that. That's gross. But the other, like, if I was really hungry, I was eating, but I was fine. But I can't imagine that being the situation today with Hannah. Hannah would literally sit there, and she would still be sitting there till this day, just, you know, waiting for the time to pass. And so, yeah, at the end of the day, it doesn't matter whether it's ARFID or pfd, we have the same mission. We want to help, same audience. And, you know, it's amazing to come together and raise awareness. You guys have so many resources. You've been doing this for so many years, and you've seen what's worked, what hasn't worked. You guys have, you know, spent money on research and funded things to get to where you are and have the support available. And it's amazing to grow and really get this information out there to people, because there's definitely a large number of people who struggle with feeding issues. And I'm sure that that's just going to continue to rise as the more babies that are born every year. And it's really important to have it at the forefront, like you said, because feeding is one of those things that you need to survive. And if that's something that's giving people some of their challenges, we need to figure out why, why fix it and. [01:19:25] Speaker B: How do we fix it? Because it's. It's not picky eating and it's fighting for credibility, fighting. Fighting for validity. Because I think that's so often people have just been called a picky eater their whole lives. You have adults even who have just thought that they've been a picky eater and haven't known about arfid and haven't known about maybe a history of pfd, if they had feeding struggles early on in life and they still need support today and they need resources and they need to be seen. Both of you recognized that the meaning of what it felt to be seen. And I think that's what's so important about raising awareness. And raising awareness of both of the conditions together is really important because there is so much overlap between the two. Pediatric feeding disorder really being that early on in life, as feeding skills are developing and your psychosocial relationship with food is developing, I think that's where that disruption occurs. Where if it is a lot of trauma or if there are just so many negative experiences, the primary driver could become psychological. And that's where it'll be really interesting as we can grow this research and work in partnership with our eating disorder colleagues to see when does that flip happen? How can we prevent it from turning from PFD to arfid? Or how can we make sure it's not a mental health diagnosis for a one year old? And that's why we do try to do this as sharing that together, PFD and ARFID doesn't matter what it is, but feeding matters because it's not picky eating. And so I don't know if you both want to talk a little bit about what your interest is in raising awareness under kind of like a, like a rallying cry around the Stop picky eating. Have you both interacted with that term before or had your children been called that term before? I know a lot of parents that I talk to, it's like almost like nails on a chalkboard when they hear that term. And that's, I think, why we wanted to use it, because it is just like this. We want to scream at you that it's not picky eating. [01:21:28] Speaker D: You go ahead, Michelle. It just makes my blood boil. [01:21:33] Speaker A: I know. Mine too. Yeah. You know, there is, you know, picky eating is what it's been referred to since I can remember, since I was growing up. And it's just something that's ingrained in everybody's mind is if you don't eat right, you're a picky eater. And that's just the label you get. And that's the label that's days with you. And it's very frustrating. It's very frustrating to those who are the ones who have these feeding challenges because A, it doesn't make them feel good whether it's picky eating or not, and B, it's an incorrect Label. Because the bottom line is why? Why are you a picky eater? What got you to this point? Point? Did something happen? Would you have a medical condition that caused you to eat this way? Did you have some kind of traumatic experience that caused you to eat this way? And so it's like this blanket statement that's constantly being labeled and stuck on people and it doesn't make them feel good. And for the parents of people who have kids with eating challenges or feeding challenges, it's very hurtful because we know that that's not the situation, that it's so much more than just that. And so we really need to stop using that term because there's no truth to it at all. And instead of just, you know, continuing to use the term and label people picky eaters, let's try to figure out why are these people struggling with food. That's my two cents. [01:23:12] Speaker D: Yeah, I, you know what I'm most excited about with the one bite challenge, and it's not picky eating is that I feel like people feel like, oh, if this was such a problem, I would have heard about it. Or, you know, I was a picky eater. How many people do you have say, my kid only. My mom says, I only ate peanut butter. Have you tried ice cream? You know, like you, Michelle, we were told if she wants to eat ice cream 10 times a day, she can. Well, guess what, she didn't want to eat ice cream 10 times a day. You know, and when she did want to eat ice cream, it went away. You know, the point is that there is a lot of people suffering in silence. Right. Because there is so much blame associated with it because of the lack of knowledge. And my big hope is that people are going to start to understand, which is going to fuel better research and information, just like any field that's evolving. Right. Like, people weren't surviving. Like, I know in my kids case this might be from prematurity. That's okay. But there's lots of kids who have this condition or adults from other causes, a congenital heart defect. Right. At the end of the day, they still need a team of people that work together and collaborate to work on the feeding aspect of it. Right. And the bottom line is people don't eat either because it hurts to eat, it's hard to eat, or they don't have. They're afraid to eat. Those are all really real and really valid. And so my hope is that people are going to want to be a voice. [01:25:03] Speaker B: Yeah. [01:25:04] Speaker D: For others. And even just thinking about doing this challenge, the One Bite Challenge. [01:25:09] Speaker B: Well, that was what I was going to pivot us to. [01:25:11] Speaker D: I have, like, anxiety over, like, what the food is. Right. I mean, I think in some level, even though I don't have PFD or ARFID or I'm able to maintain my weight and grow, it's still a real thinking about this challenge. And I don't know if you two have thought about it. [01:25:30] Speaker B: Well, Michelle, tell us the origin story of the one bite. Yeah, because that's one of the mechanism. The One Bite Challenge is one of the mechanisms that we will use to support this awareness campaign. And it was born from you all really wanting to raise awareness and build empathy and knowing not everybody can take a bite. But how can we make sure people see our kids and our adults for what they're going through? [01:25:54] Speaker A: It's very hard to put yourself in somebody else's shoes, especially somebody who's struggling with something. And we watch Hannah from, you know, the outfield and see what she's going through, but we can't even imagine internally what she's going through. All we see is her reaction to things. You know, like, we see the suffering. And especially for somebody who doesn't have, you know, challenges with eating food, like myself, you know, I'm a pretty adventurous eater. It's very hard to relate. But when you see her suffering, it brings on this, you know, empathy. And you see, like, wow, this is something that I take for granted because it's so easy for me. And so the idea was, and this will never, you know, replace somebody who really is genuinely dealing with a feeding issue, but at least for a second, to really process what you're doing is you're taking something that doesn't feel right, and you are challenging yourself to do it, regardless of the fact that you're afraid or of the fact that it may hurt you or the fact that you don't know what the outcome is going to be. And you're doing it to challenge yourself and see, you know, can I get through this? And yes, you're going to get through it, and you're going to feel good that you were able to get through it. But it'll give you a better understanding of realizing how difficult it is for somebody who struggles with feeding to take that one bite. You know, something that the most of us, like I said, we take it for granted, but it really makes you appreciate it on a different level. I've done the one bite challenge myself, and like I said, I'm an adventurous eater. And so I was like, oh, that's gonna be a piece of cake. No problem. And so I picked a food that I've avoided my entire life because it just, something about it just grosses me out. Like I, when I imagine this food, I imagine an animal, you know, just like a slug, swimming. I try eel, the sea eel. And I have to tell you, from the moment that, you know, the whole day that I knew that I was going to be doing it, I was having major anxiety. I didn't necessarily know that it was related to that, but I then figured it out that it was all related to that. But even up until that moment when I was going to take that first bite, just bringing that piece of food to my mouth, the feeling that it, that it took over my entire being and then not just putting it to my mouth, but then getting myself to swallow it was so difficult. It's something that I've never paid attention to when I've eaten before. But I was, you know, feeling, going through those feelings of doing it. And it really made me have this sense of just like I said, empathy to realize how difficult it is for somebody who struggles just to even eat that one bite. Something that as parents we're naturally told, just take that bite, just one more bite. The bite for your mom, the bite for your grandma. You know, just that one more bite. But that one more bite could cause so much harm. So it's really interesting to actually go through that. And we were hoping the idea behind the one Bite challenge was to bring more awareness to our fids, specifically now feeding matters so that we can get the conversation going so that people do become more familiar with pfd, with arfid, with feeding challenges and so that, you know, people can really start to take an interest in learning about it and seeing how they can help support others loved ones. So that was the primary reason for, for the one bite challenge was to raise awareness on something that is just not talked about enough. [01:30:03] Speaker D: Well, what I love about it most is that every single person has a relationship with food that's unique. I don't know a single person who can't think of a food that they either had an experience with or they're afraid to eat. You know, like I wouldn't want to eat a live grasshopper, for example. Right. I mean, just the thought of that. What I'm saying is it's something we can all relate to in some way or another. Whether it's the food that we're going to choose for the one bite or whether it's a memory we have from our childhood of a food that maybe we were forced to eat or we did eat and we didn't really like, or a food that made us sick when we ate it because we didn't like the taste of it. And, you know, we can go to anchovies and liver and all those things, right? And I can say grasshoppers. But the reality is that for kids like mine and yours, we're talking about every single food either being hard, being painful, or being afraid, you know, and that's really real for these kids. And so I love that we can shed light on that and collectively provide a better community of resources, because I know where we're going to put these funds for those who choose not to take the challenge, or those who just want to donate to the cause is in making sure that people have more awareness of the conditions as a whole, of the importance of feeding, of it mattering, but also that we want to have a better platform for families to connect with other families, for resources, for guest speakers and conferences and education and research and all the things that need to be done to keep moving this needle forward. And, you know, we want a world where all children will thrive, all people will thrive, you know, regardless of their feeding differences. And I think this is so cool, and I'm so thankful you thought of it and that you're sharing it with us, you're sharing Hannah and your platform with Feeding Matters, because I feel like we have done a really great job at feeding matters, of leading research and education and bringing the field together. But the reality is that most families. It's a lot to put yourself out there. You know, there is so much criticism and, you know, everybody has an answer, right? But nobody's walking in my shoes or your shoes. And I'm just so glad that this experience is helping Hannah so much, hearing you say how she's tried 300 different foods and they've been on her terms and her choice. I mean, that's. That's so cool, that. And thank you for sharing that with the world. [01:33:07] Speaker B: I know that it's not brave, and you're brave, Michelle. [01:33:10] Speaker A: Yeah, it's very difficult, you know, to be vulnerable. And like you said, there's a lot of criticism, but, you know, nothing in life is going to change unless somebody wants to make a change. And regardless of the fact, whether it's an adult or a child, if. If she's able to be the voice for so many others and make a difference and is willing to share her story and her experience to help others in the future, so that they don't have to go through what she went through. It's really amazing to watch her blossom and thrive and just see how far she's come in such a short period of time. So, you know, nothing happens if we just sit there and keep our mouth closed and say, you know, stay quiet. The only way that we can actually make change and make a difference is if we can come together as a community and be loud and be the voice for so many others. [01:34:04] Speaker B: Yep. Like we talked about, we can march on Washington and really help this issue be heard and be seen and raise the awareness that we all want to see of this so that kids and adults can finally feel seen and feel included and accepted in a world that probably doesn't feel very inclusive. And it's so interesting, Michelle, because of the awareness that you've been able to raise through your platform with sharing Hannah, and Hannah sharing her story. It's really interesting to see it, the ripple effect that it has. And so as we've been trying to figure out, like, okay, we need to raise awareness of pfd, but in order to do that, we also need to figure out the overlap challenges with arfid. And that's kind of what led to a lot of the resource work that we did in sharing the differences and the. But then also the consensus work and bringing the experts together to declare what are, you know, what are the differences or what are the similarities. And so we have that consensus work coming out soon. But then this most recent consensus gathering that we had, and even some of the calls that I've been on since they referenced, like, families are finding this diagnosis on social media. And I, like, every time the word social media comes up, when I hear about, like, from the ARFID landscape, I'm always like, oh, it's because of how amazing Michelle has been in raising awareness online. Because that's where families are finding support and finally feeling seen and being able to show their children Hannah and how brave she's being. [01:35:40] Speaker D: Michelle, I don't think you understand the amount of awareness that Hannah's already brought to seriously this. [01:35:49] Speaker A: This condition, you know, because there's. We've always, like, influencers, right? Like, you hear the word influencer, and we all look to influencers to figure out, you know, the latest trends of clothing, the best skincare to buy, whatever it is. And then you have these child influencers who are, like, selling skincare products and all that other garbage. But what happened to the influencers, like Superman, you know, the superheroes. [01:36:16] Speaker D: Right. [01:36:17] Speaker A: The ones who were so powerful and really, like, made a change and made you believe in yourself or feel like you were tough and strong and you can conquer anything. And I feel like Hannah's almost became that person for, like, that generation for the kids where here's a young girl who's. Because it goes more than just her eating. It's. It's the fact that she's, like, facing these fears constantly. And I think that that's what really makes people look at her, whether it's an adult or a child, and see, like, wow, if she can overcome this challenge with such grace and so calm, and here she is using these tools that she's been learning, then why don't I try applying those same tools and overcoming my fear of my meeting that I have with my boss in 30 minutes type of thing? And so that's kind of why we really wanted to focus on the here I go line, because it applies to anything in life. Like, literally, it could be for anything. [01:37:17] Speaker D: You're so right about that. Here I go for the job interview. Here I go to take my test. [01:37:22] Speaker A: Exactly. I think it's more than just, like, her sharing her story with Arfid. I think it's just looking at her more of, like a child overcoming this challenge and doing it every day and not giving up and just continuing to go, go, go. I think that's why. And through that, it really pushed the whole Arfid agenda because people know her as Hannah with Arfid. And so it's made Arfid now into something, you know, more talked about because of all of these other things that she's doing. That that's kind of how I think is what. How it all happened. [01:38:02] Speaker D: Well, whatever it is, it's great, and it's. It's a blessing. And I know it doesn't come without a whole lot of heartache and a whole lot of other things that you've had to deal with, because just hearing you share that, like, pains me for you. Just because it's bad enough when your own friends. You know what I mean, like, your own family can make you feel, but then you have all these people judging on the outside, the fact that you're just a really strong woman. I'm just saying I love it, and I love that, and I love that Hannah's willing to do it. [01:38:37] Speaker B: Thank you so much for you guys joining us and for all that we're going to do with the one bite challenge. And it's not pick eating. I'm just so grateful to both of you for your inspiration. Your passion for turning something personal and making something of it and helping so many other people. [01:38:53] Speaker C: So thank you when supporting a loved one with feeding differences, it's easy to feel like you are alone at Feeding Matters. Our hope is for you to find the community resources and support that you need through our Power of Two Parent to Parent Mentoring program. Parents in need of support are matched with one of our volunteer family coaches who have lived experience with their own child and can offer emotional support, resources and guidance to lessen the isolation that families face with Pediatric Feeding Disorder or PFD as well as avoidant restrictive food intake disorder or arfid. Families can request a one time phone call or a three month or six month match by filling out the request form on our website. A family coach will make contact via email first and then by phone or text message, typically within two to three days. For more information please contact us at 623-242-5234, extension 306 or [email protected] you are not alone.