[00:00:00] Speaker A: When supporting a loved one with feeding differences, it's easy to feel like you are alone at Feeding Matters. Our hope is for you to find the community resources and support that you need through our Power of two Parent to Parent Mentoring program.
Parents in need of support are matched with our one of our volunteer family coaches who have lived experience with their own child and can offer emotional support, resources and guidance to lessen the isolation that families face with Pediatric Feeding Disorder or PFD as well as avoidant Restrictive Food Intake Disorder or arfid.
Families can request a one time phone call or a three month or six month match by filling out the request form on our website.
A family coach will make contact via email first and then by phone or text message, typically within two to three days.
For more information, please contact us at 623-242-5234, extension 306 or
[email protected] you are not alone.
[00:01:14] Speaker B: May is PFD and ARFID Awareness Month and Feeding Matters will be celebrating and engaging the community with weekly themed content. We'll have expert led Instagram lives, podcasts, resources and a whole lot more. We're going to get informed, get deep, get loud and get local about Pediatric Feeding Disorder and avoidant Restrictive food intake disorder. So join us on Eating Matters on Instagram.
[00:01:43] Speaker C: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding Does Matter.
Hello and welcome to Feeding Does Matter. I am here with my co host Dr. Haley Estrom. How are you doing Haley?
[00:02:03] Speaker A: I'm doing pretty well Jacqueline. How are you?
[00:02:06] Speaker C: Good. I'm doing well. I'm taking a break from a leadership planning meeting today with Feeding Matters so it's always fun to be in the thinking big picture realm because I don't always get to do that day to day. But that does make our guest the perfect person to come on today because our guest is really helping us think bigger and broader and think about where we need the future of Pediatric Feeding Disorder, ARFID and Feeding Matters to go. And so I'm excited to share with you all a guest that we have been long time awaiting to join us on this podcast. So we're so grateful that she's coming to share her story with us. And that is Rachel Conrad who is our Family Centered PFD Research Consortium Chair.
She is also a feeding specialist herself as a trained speech language pathologist and uniquely she has lived experience herself. So she had pediatric feeding disorder as a child before it was called PFD and that transitioned into ARFID as an Adult. And so. Hi, Rachel. How are you doing?
[00:03:13] Speaker D: I'm good. I'm good. I'm really excited to be here.
[00:03:17] Speaker C: Good. We're so excited to have you. It's. You know, you've heard us talk about the consortium so much on this podcast that it's like.
And you've had such an integral part in how it's been building and growing and the impact it will make in the field. But it's just so wonderful to have you on. So, so excited.
[00:03:37] Speaker A: Oh, great. I'm so excited. So, Rachel, can you start out by just telling us a little bit about yourself?
And I came into this area.
[00:03:46] Speaker D: Yeah.
So, growing up, like Jacqueline was saying, I exhibited signs of feeding differences, and at the time, it wasn't really addressed or talked about. My mom tried to do the best she could with giving me my safe foods and, like, letting me have space to explore food.
But as I got older, I think I started to realize, and my mom did, too, that there were more challenges that were there than we originally thought.
I had a lot of, like, GI difficulties growing up, some allergy issues, not necessarily surrounding food, but just kind of the symptoms of allergies and how they contributed to my difficulties with eating.
And honestly, I never received treatment of any formal type for my feeding differences. Um, it wasn't until I became an adult and I kind of started seeking out resources on my own that I really figured out all of what was going on. I'm still in the process of figuring it out. I feel like I don't think I'm fully there, but we're. We're working on it.
I have the unique perspective that I grew up with, both of my parents being speech language pathologists.
And so that kind of just ended up being a natural route for me. It was something I grew up watching, and I fell in love with. And so that's what I went to school for. And.
And when I got into it, I honestly did not see myself going into feeding therapy. Originally, we didn't learn a ton about it in school, and so that wasn't necessarily a step I was taking. But when I got out of school and I took my first job, I was kind of thrown into it. I adopted a caseload from a therapist that was leaving at the time who had quite a few feeding patients on their team. And so that's when I started delving into everything, and that's actually how I found Feeding Matters.
I just started Googling everything I could to figure it out.
And when I found Feeding Matters, it was kind of like My segue into figuring out what ARFID was.
And that's when I was starting to learn more about arfid. And I started to make these big realizations, like, oh, that's me. Oh, hey, I do that. Oh, hey, that's not normal. And other people don't eat that way.
And so really very, very short. Like, long story short, I really found my passion. I found what felt good to me, and I. I started figuring out treatment approaches that worked in my sessions, and I started realizing I had so much more to give outside of the tool, like the training tools in my toolbox. It really became more of, like, you know, when I was little, this was really hard for me, and I can see this child going through similar things.
And that was when my mindset almost shifted to this. This thought of, like, you know, I had a lot of difficulties growing up surrounding food.
I want to do everything I possibly can to make sure other children don't have those same experiences and that we can better the world for people with feeding differences in general.
And so just like, what, almost two. A year and a half ago, essentially, when you guys had put out the feelers for the consortium, I think it was like, 10 o' clock, my time, and I was like, I'm gonna do it. And I just submitted my application, and then when I found out I was accepted, I was like, okay, it's happening. And I truly had no concept of, like, what it was going to look like. And I definitely did not see myself going into this role initially. And now that I'm here, I absolutely love it. And I love the connections that I've made and the people that I've met.
And it's given me so much more purpose and added onto my passion, and it's just taken me kind of into the next step of pushing forward the world of feeding differences for children who grew up like me and had other differences as well.
[00:07:57] Speaker C: Yeah, I love that, too. And I feel like your story is just like, such a beautiful arc between, like, kind of, like, resolution, not resolution, because I know you're still on your journey, but a way to kind of, like, find meaning in everything and, and build on top of anything you've developed before and, and just. Even your choice of career. And I know you said you didn't necessarily choose feeding. What kind of led you to just think about speech language pathology and, and what did you think would be your specialty prior to feeding being considered?
[00:08:33] Speaker D: I grew up in the world of autism unlimited language in the aspect of speech pathology, because that was really like, that's my mom's entire career. That's her specialty. She's phenomenal at it.
And she teaches, too. And so, you know, that was always just something I felt like I was naturally connected to. I was really good at. I grew up babysitting children with special needs and different genetic disorders. And so that was kind of my starting process.
And then I started to kind of branch off and do some of my own things in the world of limited language, genetic differences in autism, and kind of was getting my feet wet in that aspect and trying out different careers while I was in graduate school and in undergrad to see, like, what really is going to be my good fit.
And so when it kind of comes to, like, that big skirt, I have one patient that comes to mind. She's this beautiful little girl, and she had a genetic difference, and she was on a feeding tube when I got her, and she wasn't really making any gains.
And I just kept going, okay, I've got to go get more resources, so I feel competent and comfortable in what I'm doing, and I'm not wasting this person's time. And so. So we started making better gains. We ditched the table at one point and sat on the floor, and we're doing picnics. And I started really just using language that I felt meant more to her instead of like, okay, we're going to try and take a bite. It was more so, like, this food feels like this in my mouth and just, like, giving more sensory responses. And that was where I started to see such a beautiful bridge and connection. And I started bringing in foods that scared me and showing her, like, it's okay to be afraid. And it's how we process the fear. It's how we process, like, exploring this food in a way that we feel comfortable, not necessarily at the pace of somebody else. So stepping back out of that role of being like, okay, here's our absolute goal that we have to get to, and now here's all the steps we have to take. It was more. So let's get you comfortable and confident in what you're exploring and engaging with and realizing that you have the power and you have the autonomy of what you choose to put in your body.
And so she was my first big success story, and we were able to get her off a feeding tube. I saw her two years ago in an airport randomly, and she came up, and she lifted up her shirt, and she was like, look, it's gone. It's still gone. And that was one of the best feelings in the world. And I think as I hold on to a lot of those memories of some of these patients, that I started with one going back in and thinking about those steps that maybe, like, I didn't always take the right avenue, or I didn't always use the right tool in my toolbox, but being able to step back and say, okay, I did this wrong. How do we fix it going forward? And I. That was always, like, a really big proponent of why I continued on in the feeding world.
And also, too, I realized how much helping them helped me.
Like, when I started this feeding journey in the professional world, I actually was able to expand my diet and be able to better understand where my challenges were lying and which foods I could potentially add as, like, more of an accepted food rather than a safe food. And understanding that that's okay.
And a big thing that, like, I've really come to terms with is, like, I'm a different eater, and that's okay. Like, it's okay to be different in that aspect, and it's okay that I don't eat all the same foods as everybody else, and it's okay that I don't have a hundred foods in my food repertoire. It's what I do with the foods that I do have and how I nourish my body and. And how those foods make me feel, that's important.
I love that.
[00:12:35] Speaker C: And I. I guess in thinking through, like, you going through your own struggles as you're supporting other families and children, I guess my initial thought even before meeting you was, you know, how can you do that if you've got these struggles each day, like, that just seems almost really hard on you. Do you want to talk to me about that or how you approach that? Because you've almost found, like, a. A beautiful balance.
[00:13:06] Speaker D: Yeah. I think you have to really, like, take a step back and realize it's okay to be vulnerable, but yet still professional.
Like, finding those boundaries of, like.
I personally feel like I'm. It's much more easy for me to be vulnerable when I am with a child who is going through something I've gone through. I've had to do a lot of work to, like, do that in front of parents more so. But. But when it comes to navigating, like, the children, I think for me, it's so much so about, like, showing them that you can do it, and that really drives who I am as a person. Like, my whole job is to help people, and it's to get them to be where they want to be, not necessarily where I want them to be, and that's okay.
I think we, we try really hard to make sure that our goals are patient centered and family centered. And. And when you're looking at those things, yes, I have challenges, and sometimes it feels impossible, but then you can talk through it with them. Like, hey, I'm having a really hard food day today.
I don't necessarily want to put this in my mouth. Is that okay with you?
And sometimes you'll get kids that'll be like, we can do it together. Like, I'll hold your hand if you want, or you have other kids who will say, I don't want to do food today either. And so then we pull up recipes and talk about recipes that we could try in the future, or we decide to make something and give it to somebody else. And I think that in itself speaks volumes to, like, how I handle food at home and in my personal life, because there are days where I am all, food it out.
I don't want to cook anything. I don't want to think about what I'm going to eat. And I'm really lucky that I have such a supportive partner who can kind of step into that role and be like, okay, we're doing this tonight. And we've done a lot of communication in that aspect to get to that point, because it's hard. There is a lot of challenges that come with having ARFID especially, and even more so when you have pediatric feeding disorder and there's all those complications that go into it.
It's really challenging to pull the positives from all of those negatives at times. But when you surround yourself with the right people and you have that support and those people that you can reach out to and say, like, I'm struggling to eat today. I don't have an appetite. Like, I just kind of need somebody to talk this through with me. Like, I've now, because of Feeding Matters in the consortium, like, I have so many people I can contact when that happens. So that's been, like, a big light for me. I will say there are days where, like, I get through my workday and I'm very. Just kind of zoned out and tired. And I think that that is a really big challenge that health care professionals all across the board and educators and just people who work with other people experience often. And so making sure you have the right support staff in, in your area that can kind of know you and know how to best support you is important.
Like, and for example, like, I'm just now starting treatment for my ARFID and for the longest time, I never thought that it was severe enough that I needed to do that. And so taking that step is like putting more people in my area and in my corner to help me be better about nourishing my body on days where I don't have an appetite or like I have to go to a new restaurant for something and it feels really overwhelming. So what do I do? Do I have to eat before? Should I try something new while I'm there? And also too, a lot of it's kind of in your head where you'll be like, so and so might judge me or this is a new person to meeting me. And they may ask me lots of questions about my food and how do I handle that. And so there's a lot of anxiety that can surround it. So when you can find tools that work to help calm your anxiety, like looking at the menu ahead of time or really maybe messaging the person privately and saying, hey, I have feeding differences, I eat differently. I may not eat while I'm there. And that's okay, don't worry about it. I'll have like a drink with me or like small appetizer that I know feels safe. And that's okay.
I think being transparent and really just telling people like, hey, I have this eating disorder called arfid and here's where it's at and here's kind of the things about it. And if you'd love to learn more about it, I'm so happy to talk to you about just may look different when I'm eating versus what you're eating. And I might not be willing to like share plates and things like that. And that's just who I am as a person. And I'm starting to step more into that, like, competent role of that. It's been a long journey.
Well, long journey of getting into that spot, but we're getting there. And it's, it's constantly a work in progress. And that's okay.
[00:18:18] Speaker C: Yeah, that's very okay. And in terms of like almost kind of giving yourself permission to share that identity and that part of yourself more publicly, seems like a journey that you've had too.
[00:18:31] Speaker D: Yes.
[00:18:31] Speaker A: Hearing a lot of elements of trauma informed care and how you approach your treatment.
[00:18:40] Speaker D: Yeah. And I would say I've taken, I've taken trainings on trauma informed care.
And it's funny because, like, sometimes you don't realize you're doing something until you take a training in and you're like, oh, I've already been doing that. Like that's something I do and it's like, oh good, I'm doing the right thing.
I'm not messing up drastically or things like that. And I think that's a big thing that I would love for parents and caregivers of people out there who are getting services to realize. A lot of us healthcare professionals, like we are constantly thinking about what we're doing in our sessions and sometimes replaying sessions and making sure that we are giving them one, the care that they need and two, meeting their needs in a way that feels safe and empowering. And I think that's a really big important thing to navigate as healthcare professionals because you want to build a connection and trust and you want them to, to feel empowered by what tools you're giving them to be successful.
[00:19:43] Speaker C: Very important.
It is very important.
And it sounds like you do such a good job of being able to talk patient to patient just because I know that like you are kind of talking to both children and parents and caregivers.
And you mentioned Finding Feeding Matters and finding the Family Centered PFD Research Consortium. What's been your experience in terms of either what you knew about the research before and how you feel about it now, or even just your experience of building this in partnership with everybody else on the consortium?
[00:20:19] Speaker D: Yeah, I think in terms of research, you know, my lens was very speech language pathology driven prior to joining this consortium. And I think that's kind of more of like a natural flow of things when you are working in like a speech only clinic or a physical therapy only clinic, like things like that, because that's what you're seeing.
I think when I got to Feeding Matters and started to see all of the tools and resources and like the blog, it's, it's so much, but it's so necessary, right? You have so many tools that you have access to that are free and accessible, which is really hard to come by when you are a therapist. A lot of the times you're having to pay for a lot of things to gain access to them. And so that's one big thing that I found amazing about Feeding Matters is that I could find research articles that were linked to Feeding Therapy.
Kind of going into the consortium and meeting people who do research like as a huge chunk of their lives from like our support team was like mind blowing. Very much so.
Meeting like Kyler and Haley and Will and just some of these people who this is what they do and it's a passion of theirs and like being able to step into that role feels like you have very Big shoes to fill at times, but you also feel so supported that, like, you tend to forget that you aren't. Like, your feet maybe don't fit those shoes just right.
And then on the the side of the consortium, we have so many members who have so many different skills and just different experiences in life.
It's just amazing. I don't know how else to explain it besides it being just amazing. I have had conversations with a majority of our members, like, one on one, and like, getting to know them on a personal level and hearing their stories and their children's stories has just like it. It shifts a huge perspective for you. And it's also been nice too, because, like, it makes them, one, feel like they're not alone. And two, it makes me see, like, I see these parents stepping up into these huge roles and doing things that scare them just like I am.
And I think that is just such a beautiful piece of, one, being a parent and a caregiver and two, navigating something that is still somewhat unknown in a lot of aspects. But two, they're pushing for change in a positive direction that allows us to say to everybody out there providing services in the feeding differences world, like, hey, these people are living this in real time.
We need to make these adjustments because what we're hearing is X, Y, Z, or we're struggling with certain avenues of the feeding world that maybe need to be adjusted or reformed or the direction maybe needs to shift a little bit. And that, as a professional, is so empowering to hear because I always want feedback from my patients and their families. I'm always asking them how they're feeling about their care, because I want you to be getting the most out of what you're getting in the short time that we have together.
And my whole job is to give you tools to take with you, not to be with me forever. As much as I would love to keep most of my friends forever, it's not. It's not plausible and it. And it's not a good thing for them.
Will I stay in their lives afterwards? Hopefully. Fingers crossed. Because you build these very big bonds and these very big connections with people. And we're seeing that even happen in the consortium where we're building these connections and people are comfortable calling me on a Tuesday night and saying, you know, my kid is really struggling with this and I don't know who else to turn to.
And I love that aspect of it because we can exchange tips and tricks and things that are helpful and empowering, and we can also just be there to support one another. We have a lot of people who, their journeys can have really big peaks and really deep valleys. And when you feel like you're not alone in that and you have people to turn to, it gives you so much power in your heart and it, it helps you keep fighting a good fight.
[00:24:56] Speaker C: Yeah. And I think, or we've heard definitely from members of the consortium that are in the parent caregiver realm versus individuals and patients themselves, how much you inspire them and how it's cool to see, like, what, like, the future may look like for their children.
What does that mean to you in terms of kind of being that peer support or even leading a group of parents and caregivers and patients?
[00:25:29] Speaker D: Oh, it's emotional for sure. I think one of our members, David, he has told me time and time again, and he'll, he'll tell me privately, like, it's empowering to see you now and see you standing here and saying these things and talking about your experience because, like, as a parent, you're living it from the parent perspective. You can't always get inside your child's head to understand the why behind it. And I hear this from patients, parents as well. Like, I. They enjoy the fact that I can say, you know, hey, they're telling you. And maybe they're not conveying it in a way that you can understand, but essentially what they're telling you is like, this doesn't feel good. In my body, we have to get to the why it doesn't feel good and figure out is it a medical aspect or is it a sensory aspect or is it just like right now my body doesn't need food or doesn't feel like it needs food.
And so when you hear those things, sometimes it like, almost kind of like, I'm, I'm doing that. This is amazing. Like, I'm. This is what I've always wanted to do. I've wanted to help as many people possible.
And so when you hear those things, like, it really, truly does make you feel a lot of emotions because some of them are, are a little bit more anxiety based, where you're like, am I doing a good enough job? But then when they say those things, you're sitting there and you're going, okay, like, I'm doing what I'm meant to be doing. And that's truly what I felt coming into Feeding Matters, especially in this role. Like, I feel like I've stepped into this place where I am exactly where I need to be. And the universe has brought me here for a very Specific reason. And I'm going to do everything in my power to make sure, sure that we can get the feeding world to be where it needs to be from the person and the family perspective, because it's. They are the most important out of everything.
When it comes to the feeding world is listening, body autonomy, navigating social, emotional aspects surrounding food. All of those things are such a crucial role.
We don't want to get so focused on a goal that we lose sight of who the person is. And I think that's one of the biggest things that helps me as a human being, providing services who has lived these experiences that I.
I can have a goal in mind. But if the kid comes in that day and. And they don't want to navigate whatever I'm choosing for us to navigate that day, we scrap it and we. We do something else. And so it has. It. It. I'm learning to say I'm grateful I said yes, but even more so, I think I'm. I'm taking it a step further and saying, like, I was put here for a reason and I'm going to do my absolute best to fill those shoes and to step into this role in a positive manner, to drive things in a way that people are asking us to. You know, with all of our consortium members, they all have a voice and a lived experience, and a lot of them have very similar thought processes on where they want to see the direction of the feeding world go. And so empowering their voices, amplifying their voices, like, that's the role I want to have and I love having.
So.
[00:28:48] Speaker C: Yeah, I just love when you talk about it like that. Rachel, you're just such an inspiration. And I know that, like, sometimes the weight of this work feels really big. And I know we've had conversations about that.
It feels big because it is big. But you're leading it with grace and inspiration and passion. And that is something that makes it so true that you are exactly at the place that you need to be in, you know?
[00:29:19] Speaker A: Found it. I'm so glad you got that email.
[00:29:22] Speaker C: So glad you found it. That's so true, Haley.
Because. Yeah, I mean, like, Haley and I, when we put out these things, we don't know who's coming in. Like, we're just like, we're gonna try to share about it to the consortium, like, to like our Feeding Matters network.
[00:29:37] Speaker A: But I think it was just meant to happen. It was just going to happen. Like we. It was meant to be.
Well, and Haley, remember, you're exactly where you belong.
[00:29:47] Speaker C: Yeah, I Totally agree that you're exactly where you belong. Because we were even like, we hope we know Feeding Matters Network is mostly geared towards parents and professional or like parents and professionals. And so we were unsure if we would even have someone who had had lived experience since they were a child to be involved in this and to have you have that plus professional plus, like your current life and being passionate about it and having the leadership skills to step into a role like this, it is like, it's just really great alignment.
So you inspire us too, Rachel.
[00:30:24] Speaker A: Absolutely.
[00:30:25] Speaker C: You do.
You're right. It is emotional when you talk about it. So the consortium meeting happened a month ago.
How are you feeling? In the sense that we were building up to a meeting. We had the meeting. We've had lots of meetings following it up, trying to figure out, you know, like, what does writing, what everybody agreed on and how do we get that out and disseminate that in peer review, publication, and to the world.
Talk to me a little bit about where your head's at with all of that.
[00:30:57] Speaker D: Oh, man. The meeting was so much more than what I anticipated it to be. It truly was what we are asking for.
I feel like we really saw experts and lived experiences come and sit at a table together and work together in an empowering way and navigate hard conversations.
And ultimately, like, when I left that room one, I was very exhausted. It was a long day, but it was a good exhaustion. It felt empowering as we were leaving.
There's a lot of, like, the logistics that we've been having meetings about on, like, how to go forward from here, because it's almost like you have your first big hurdle, and now here's our second. And we can do it. We have the team that is empowered. We have the support team that is there to help us in every aspect of the way if we if when we need it. And so really, when we left the meeting, there was a lot of, like, clarification, personally, on, like, just knowing that we were all doing what needed to be done in a positive manner and reaching goals we truly wanted to reach.
I think once we have kind of been getting into these meetings, it does feel a little bit more heavy when it comes to the writing because that's something new.
And normally I'm like, gung ho about learning new things, but this is such a big thing that you. You want to make sure you're doing it right. So you're checking all the check boxes and you're asking all the questions, no matter how small they are or how crazy they may Sound, but, like, truly knowing that you have a support system team, after that meeting, realizing, like, truly, like, look at all of these experts that are stepping into this and saying, I'm here to help you. I will do whatever you need. But we want to make sure it's your voices that are uplifted.
That was very, very empowering. And having conversations about that with Christina and Elizabeth, my vice co chairs, like, we are. We're all finding our spot. You know, we're finding where our niche is and. And where we can push and lead in a way that brings everybody together and still makes them feel like they have a voice and they're an individual that has a lot of power to their voice.
And so I would say when. When we. Ultimately, when we left that meeting, I was so excited and also, too, because we got to go to the conference after, so that was really great. But truly, truly, like, even after we met earlier today, and, like, we have steps and directions and outlines going and things.
Things are moving and learning to kind of balance that. Like, you. You move, but you don't want to move too fast, but you also can't move too slow because there's a deadline.
So I think that I'm. I'm learning a lot of new things about myself in this process, too, and, like, learning what I can do, and, like, I'm getting really good about asking for help, which is something I have always struggled with. And so, like, you learn a lot about not only the process of this and how much goes into it, and ultimately, like, from my knowledge at least, I don't think anything like, this has ever been done before.
And so when you're. You're looking at the history, as we have said time and time again, like, we are making history doing this, and. And so making sure we're making all of the right moves and taking steps. There's so much thought and effort that goes behind them, and it gives you this really nice, like, sense of, like, I'm doing something good.
And when I step back and think about, like, these micro steps that I need to take to get to this big leap, like, I have put every thought process and, like, possible avenue that we could go into my head, so I'm. I feel better prepared.
[00:34:57] Speaker A: Do you feel like it's been a very thorough process and everyone's voice is being honored?
[00:35:05] Speaker D: Yes.
[00:35:05] Speaker C: That was really important, I think, to all of us.
[00:35:08] Speaker D: Yes.
[00:35:12] Speaker C: Before we get to our remaining question for you, Rachel, because I think we're close on time.
You did a lot to share your story with us. And every story has so many components, and it's so hard to share everything, and especially your wars, because it is your arc of your whole life and your professional life, too.
Is there anything that you wanted to share about your story that you didn't get a chance to speak about that you want to share now?
[00:35:41] Speaker D: Yeah, I think ultimately, like, especially now that I'm an adult, I realized how much effort my mom put in to making sure that I was safe.
And sometimes I don't think she realizes how much she did. And she may just be like, well, that was just what I needed to do. And even now, like, I'll still call her on my hard food days because she also has some feeding differences too, and, like, some GI stuff as well. And so when you, like, kind of, like, become an adult and can look back on your past and look back on, like, when there were really hard moments, she was my safety net.
[00:36:22] Speaker C: Who?
[00:36:22] Speaker D: Sorry.
But I think, like, the biggest thing that I take away from that is, like, parents who are doing your best, and sometimes that doesn't feel like it's enough. But I can tell you, like, everything my mom did got me to where I am today, and every support she put in place for me and every safe food is there. Like, I've never lost the safe foods that she's helped me have, which is speaking volumes. Sometimes I'll jag off of them, and that's okay. But truly, like, my mom was my catalyst in finding my passion and realizing, like, you don't have to eat a very specific way to fit in. And it's okay to be different in that aspect.
And so really, like, for me, if you're a parent out there feeling like you're not doing enough, I can tell you, like, you stepping into a role and, like, seeking out supports for your child, even if they don't always work in the way you think they're going to, putting providing them a safe space to feel like they're okay and feel like they're supported and that they have autonomy over what they're doing is such a huge step in the right direction and getting them to be an adult who can talk about their food and experience food in a more positive way.
We don't always have to put pressure on expanding a diet or, you know, taking so many bites of a food, but what we can do is provide a space where you feel like you're supported and safe to navigate those things.
So I think that's my biggest takeaway. My mom has been such a rock for me my whole life. And I feel like it would be a dishonor to not state that and to not let people know. Like, you may not feel like you know what you're doing, but as long as you're putting thought and empathy behind what you're doing, you're. You're helping in a way. You're helping. Even if it's maybe a small way, it's still a huge thing for us as the lived experience side of things, because we'll remember that. We'll go back to that, and. And we can remember the tools that you've given us to feel safe.
And so you're doing what you can, and that's enough. And it's okay to feel like maybe it's not, but don't let yourself feel that way too long because ultimately you're doing a good job.
And if you're listening to this, like, that's one big further step that you're taking to make sure that you're doing everything you can for your child.
[00:38:53] Speaker C: That's so great, Rachel.
I mean, just so everybody knows out there, every single meeting, when Rachel shares I'm sorry stuff, we're all in tears. So podcast is no different. And that makes sense, too.
Well, thank you, Rachel, for being here with us today, for being vulnerable and open in sharing your story.
It's really powerful, and it's so powerful for us to continue to listen and to show what listening looks like and how it can be integrated and impact the greater work of what needs to happen in the feeding world.
Yeah. So I think we're at our last question.
It's hard to transition into it, though.
[00:39:53] Speaker A: Yeah.
So, Rachel, what do you see as some of the biggest barriers to patient and family centered research today, and what do you think we can do to overcome them?
[00:40:12] Speaker D: Oh, man.
I feel like we're trying really hard to take a lot of steps now with what the consortium is. And even just, like, after meeting the different Feeding Matters members that, like, are a part of different pillars of Feeding Matters, you see how much is being done behind the scenes. I think a big thing is one access to care, especially for more rural areas. I see it a lot. I have families that drive four hours to see me, and they shouldn't have to. I think that's a really big thing. And, you know, when you're looking at the research aspect and, like, bringing the people and the families to the forefront, sometimes I think it can be hard for professionals to step out of that main expert role and pass that baton over to them.
And so I think getting Better about educating people before they're out into the real world and working with these patients and making sure that they understand that you are an expert in your area, but that mom and dad or grandma or grandpa or aunt or uncle, whoever they might be with that child, they are the experts in that child, including the child themselves.
I think that that's a really, really important aspect that we have to hold on to. And so pushing things forward, listening to the person and listening to their families, amplifying their voices, is going to be our best way to drive research in a positive and empowering way and to make sure that we're meeting the needs of the many and focusing on truly giving a voice to people who for a long time have been seen as almost voiceless or not heard.
And we see it through the people changing their trainings. I've been out for seven years, and I've seen so many professionals changing the way that they're wording things and admitting to when, you know, hey, this might not be the best avenue. So this is just one more step and one more hurdle that we need to jump to kind of further drive that.
[00:42:25] Speaker C: Yeah, that's a good answer, Rachel. And I think that's what a lot of, like, the consortium talks about, too, is like, so much is based on research. And so that's the.
That's the insurance reimbursements, that's the policy decisions, and how can we make sure those that don't have a voice in that are integral to how it's even built and done and the outcomes and the dissemination of it.
Thank you for everything you do for the Consortium, for everything you do for your kids and families and for us.
Really, really appreciate you.
And thanks for being here.
[00:43:06] Speaker D: Yes. Thank you, guys.
If you would have asked me a year ago if I ever thought that this was a thing, I would have been laughing at you. So for this to be a reality and to be in this role and to be able to help these people is a true dream come true for me. And finding Feeding Matters was the family and the community I never realized I was missing. So once you found it, it's like you get to keep it. And I never want to lose it. And I'm so happy that I have a space here to navigate and to help people find their voice and to find their passions as well.
[00:43:43] Speaker C: Cry all over again.
Thanks, Rachel.
Bye, everyone. We'll see you next time.
[00:43:51] Speaker B: Feeding Matters is a nonprofit organization that works with corporate sponsors to support its mission. The following sponsor ad is not an endorsement of the company its products or services.
This podcast episode is sponsored by Gel Mix and Purethic. Gel Mix and Purethic are natural thickeners made to support safe, effective feeding at every age.
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