[00:00:00] Speaker A: Presented by fematters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding does matter.
[00:00:12] Speaker B: Hey, Christina. Hey, Haley. Thank you so much for coming this morning. How's everybody doing?
[00:00:18] Speaker A: Good.
Yeah, we're doing well. Yeah.
[00:00:22] Speaker B: Nice. Well, Haley, I'm excited because we have our first consortium member as a guest on our podcast. And so it's with great pleasure that I introduce Christina Vanditto and she is a powerful advocate for feeding differences and is the vice chair and newly elected vice chair of our family centered PFD Research consortium.
[00:00:51] Speaker A: So.
[00:00:52] Speaker B: So Christina, welcome. So excited to learn more about you and share more about you with our community and just all things your world.
[00:01:03] Speaker A: Thank you for having me. This is going to be a good conversation. I really look forward to it.
[00:01:08] Speaker B: So, yeah, well, let's start with maybe just sharing a little bit about yourself and you know, if you want to get into your story too, that works too.
[00:01:19] Speaker A: Sure, absolutely. Very happy to.
So as Jacqueline mentioned, I am Christina. I am a mom. I am advocate, do lots of stuff. Right. I do a lot of things in the community and online. And one of those things is that I do share my story and our story. So I am a caregiver to a little girl that's on the spectrum. She is a almost nine and one of the ways that she experiences her neurodiversity is with eating and feeding differences. So she is tube fed and so we share our journey and what that looks like with folks and we hope that we can normalize this a little bit and also to give other families and caregivers strategies.
So that's a little bit about what we, what we're up to.
[00:02:13] Speaker B: Great, thank you. And if you feel comfortable, do you want to share how that journey has been for you both and in learning and even the autism diagnosis, but also learning about her feeding and eating needs and the journey that you both have had in that regard too, as she's grown up over the years.
[00:02:36] Speaker A: Sure. So for me, I didn't know a lot about autism. I didn't know a lot about neurodiversity until I became a mom to a neurodivergent child. That's just how it was for me.
So a lot of this learning has been learning from my daughter. I didn't know that arfid. I didn't know that. Which is avoidant, avoidant restrictive food intake disorder, pfd, pediatric feeding disorders. I didn't know that that was something that someone on the spectrum could experience and that was, you know, part of it. So I did see some selective eating early on.
And we struggled with cognitive flexibility early on. Another piece to it, right? And as skill development also challenging and delays. And so as she grew and got older, these became more impactful in her life and in her way of how she interacted, engaged and experienced food.
So I did bring my concerns to, you know, my daughter's pediatrician, and they were met with, well, you know, that a lot of children are picky, that type of thing. And I just, you know, you get that intuition. Right. I had a feeling that this just really wasn't like so many different things. Right. With when you're a caregiver to a. To a child or an adult that has differences, you know, your gut, you start to really lean into that. Right. And I'm like, I think there's something more going on here.
So. But without any resources available, without any information, without any shared community, we just kept going on status quo. And what that meant was that Gia really wasn't getting the services that she needed. She really wasn't getting the support that she needed. I wasn't getting the support that I needed to best support her. And so we ended up needing an emergency 2 placement on a Friday in the middle of COVID It was. Yeah, it was difficult because, you know, when you have an autistic child and anything unplanned is challenging, you know, and then there is that medical trauma aspect to it. So it's. It wasn't an easy road. And then afterwards, you know, I live in upstate New York. I shared that publicly. Not a lot of resources in our community. Not a lot of folks that I can turn to.
[00:05:23] Speaker C: Yeah, sorry, Christina, about how old was she at that point of getting the.
[00:05:30] Speaker A: Tube one mark before she turned six?
Yeah, it was actually the week before Christmas, So, yeah, it was difficult. And of course, when you have a kiddo that has dietary needs on top of that, our. Our stay was extended because we were trying to find a formula that worked best with my daughter Gia's anatomy. Okay. So that was. Yeah, that was challenging. So I guess to kind of circle back when we got home, we.
We signed up. We, you know, we connected with a feeding therapist who is fantastic. Let me just tell you something right now. I loved our feeding therapist. Phenomenal person. Really shared my values. Person centered. The whole nine yards really worked well with us. It's just Gia didn't respond in a positive way to it. She wasn't making advances. If anything, she was making regressions. So we put that, you know, on hold. And instead, I decided to lean into instinctual parenting. Which is something that I advocate all, you know, caregivers and families use when. When you're caring for your kiddo in general, whether you have a neurotypical child or a neurodivergent, I just really am an advocate for that and what that looked like for Gia. And I was baking and cooking and interacting and having fun and then eventually putting on a show.
Putting on a show. You know, I have a theater background, and I love fashion. And one of the things that Gia has struggled with has been changing her clothes. So another way to support that was through getting dressed up and costumes. And so I really. I think I leaned a little bit more or less towards Gia eating new foods. It was funny. I think I wrote the goal when we started feeding therapy that I wanted gia to try 10 new foods in a year.
You know, you don't. I didn't know how unrealistic that was at that time.
Hopeful, unrealistic for our situation. So I really started to focus on Gia's cognitive flexibility in a really fun way. And our first few times that we interacted with it, even Flower was very difficult for her. She was gagging and the whole nine yards. So that just kind of is a testament to how far she's come. And now she actually has about three safe foods, which is a big deal.
[00:08:06] Speaker B: Yeah.
[00:08:07] Speaker C: Yeah.
[00:08:08] Speaker B: That's amazing.
[00:08:09] Speaker C: Christina sounds like a really great way of setting goals that were very positive, I think.
[00:08:16] Speaker A: And I think that's really one of the.
Something I wanted to focus on, was that we needed to make the process positive, because this is a lifelong process.
[00:08:27] Speaker D: Right.
[00:08:27] Speaker A: This isn't going to be something for our life long. Exactly. And so I.
I think I took a couple deep breaths, and I was like, okay, this isn't going to be a year, you know, a year from now, we're not going to be eating, you know, fully, and that's okay, you know, so the tube placement help in that. I know that Gia is getting nutrition that she needs, and I think that that's a great thing for families. You know, I. I do have families that kind of come to me, and they're nervous about that, and I try to calm their nerves in that, because I think that then you can really do the real important work afterwards without the pressure of, oh, my goodness, how much, Calorically, how much has my child eaten today? And when was the last time they ate meat or had some source of protein or fat or. You know what I mean? Our kiddos tend to go with sugar and carbs and lean into those foods a lot that are nutritionally devoid, you know? So I. I do think that that helped a lot. But also, it was just, how can we have fun? And how can I reduce my stress right throughout the process? Well, so that's what we do. We bake. In fact, we're going to make a pecan pie later.
[00:09:47] Speaker B: Oh, I love that. And you call that baking with besties, right?
[00:09:51] Speaker A: Yeah, I do. Yeah. We have a new one coming. I've actually recorded a few that I haven't edited, but we have a new one coming out, and it's the bee's knees. I cannot wait. I cannot wait to share it. It's just so fun. So if I can wait, I normally get a little impatient and I start, like, I'll throw out, like, pictures and snapshots and stuff, because it's just like, oh, I just have to share the goodness. And the nice thing is, too, it also normalizes differences. Right. I don't edit all of the stuff out. You will see Gia sometimes have a hard time, and you will see her gag, you know, you will see her hand flap. You'll see all those things. You'll see how I model language, you know, communication, all that good stuff. It's all in. All in there.
So. But yeah, so I can't wait.
[00:10:42] Speaker B: Anyways, that's amazing. And what you said about feeding tubes is so powerful, because I feel like it's really challenging for families because I think sometimes it feels like a threat that a tube is going to be placed. And then when you're talking with a physician, they're dealing with tubes all the time, so it doesn't feel as big of a deal to them.
And there's so much fighting against the tube.
And so it's just there's a lot of emotion and a lot of stuff that comes with feeding tubes. And so it's amazing that you're able to share your experience with other families as they're grappling with such a hard decision of, do I stick with it and try to prevent a tube, or do I get one and have a major surgery and do all of the things that we need to. To get off of it. Any other feedback that you have for parents who are grappling with that decision?
[00:11:39] Speaker A: Well, it's multifaceted.
[00:11:41] Speaker D: Right.
[00:11:42] Speaker A: So I think first and foremost, I would say, if you are a parent or a caregiver, and you have that on the table, and that's something that you're considering and you're thinking about, don't view it as you're giving up on your child, you're not. This is not the easy way out. This is just another tool in your toolbox. Right. It's another way to support your child medically so that you can be all the other things, all the therapist and caregiver and food partner and all those things, because you can't do it all. So use, you know, use what's available to you. And that's. That's my thought when it comes to two placement, is that you're not giving up. It's another support. Support so that your child can be the best that they can. And here's another thing. So if you have the flu, right, and you're not feeling well, you're not. You're not motivated to eat. And for our loved ones that are struggling with nutritional deficiency, they're not feeling well, so they're not going to want to eat, you know, so you have to kind of get their bodies in a good place so that then they're internally motivated to eat. You'll notice a lot of different things as well. So when Gia, after she started to receive nutrition, cognitively, she was doing better physically. She could run a lot longer, a lot farther without, you know, getting tired. She was having these 10 terrible pains in the bottom of her feet. We now know what that was from.
So it's all these things that you don't necessarily that they're separate, but might kind of, I guess, like, work themselves out. Once your child is getting some nutrition, and if they are someone that does eat by mouth, you know, obviously there's formulas and supplements and so forth that you can go with. But if you're worried about that aspect, what it means for your child, you're actually helping your child kind of get their bodies and their minds in a good place and getting the nutrition that they need so that they can go ahead and eat.
Yeah. What else is there to the tube that I wanted to mention?
I think that's it. But, yeah, you're not giving up on your child. You're actually helping them. But it's scary. It's scary. I get it.
[00:14:16] Speaker C: It can be an a space to open up the ability to work on eating as, you know, like, it can take that pressure off to deliver nutrition and work on eating in other ways. Like.
[00:14:29] Speaker A: Yeah.
[00:14:30] Speaker C: And I. I know for my. My son, it enabled him to be able to walk. It gave him energy to be able to walk because he was right on the coast.
[00:14:39] Speaker A: Yes. And I think that that's where Gia was. So the day that we were sent up to the Ed, the pain in her feet were. It was so bad that she was unable to walk, you know, and. And I kept bringing that up to the pediatrician, but it was seen almost as a separate concern. And then once she started to receive the nutrition and we were able to get, you know, some. Some labs on her, it all kind of came.
[00:15:09] Speaker B: It's holistic. Everything impacts everything else. We have a full system that we're working with.
[00:15:14] Speaker A: Exactly.
Yeah.
[00:15:17] Speaker B: Well, you're such a powerful advocate, and I know something that families are often talking to us about is, you know, how do you find the strength to articulate your concerns to your pediatrician when a pediatrician is telling you something like that, like, I don't think this is connected.
You know, I feel like you're such a model for advocacy in the community. I mean, you do so much in the community, Christina. But how. And what advice do you have for families on how to find that power within themselves to be an advocate for their children?
[00:15:51] Speaker A: It's difficult because you are often, not always met in a supportive way.
[00:15:58] Speaker D: Right.
[00:15:58] Speaker A: With your concerns. So if you're anxious prior to addressing a concern with, you know, a provider of some sort, I always recommend bringing someone along with you.
[00:16:11] Speaker D: Right.
[00:16:11] Speaker A: Just. Just having another body in the room sometimes just kind of gives you a little bit more strength because, you know, you have. You have a support.
So.
And sometimes they can be a nice person to kind of chime in and say, oh, geez, I do remember you mentioning this, you know, so you can kind of have that conversation with them. Prior. But in regards to speaking with a physician or provider, I'm a big person for notes. Go ahead, bring a note. You know, just because it's easy when you're addressing multiple concerns to forget. And for, you know, when our. Our appointments are six months out, if you leave one off, you're kind of, you know, stuck with that for six months. And obviously you can call back the doctors and so forth. And I think also just knowing that you very well may not be met in a warm, fuzzy way, that's like an acceptance part of being a caregiver. Right. It's not always going to be that. And know that their intention isn't bad. It's. They come from a different model.
[00:17:19] Speaker D: Right.
[00:17:20] Speaker A: They come from the medical model. And so I think just accepting that prior and having someone with you being as well organized as possible, those are a few strategies that I always advise folks when they're going to an appointment and they're not necessarily feeling the strongest. Right. And sometimes we have really Good days of being an advocate for our loved ones.
[00:17:48] Speaker B: Right.
[00:17:48] Speaker A: And then we have some times when we're a little tired, you know, and we're just having a tough time, too. So I think just giving yourself grace in that way.
Yeah. Organize. Bring your own support and just know that we all want the best for the kiddo or the person that's in front of us. Right. And this applies to school, too. Right. The people across the table all want your loved one to succeed. It's just they're all coming from. We're all coming from different places.
[00:18:20] Speaker B: That's true. It is so many different, varying perspectives.
And I think sometimes going in with that intention can help ease the. The stress of feeling like it's an us versus them. I feel like so often, even though a conversation may end up being us versus them or whatever, at least trying to keep that mindset of different perspectives and different goals and just needing to figure out how to collaborate takes the pressure off a little bit. I don't know. It's reminding me of what Dr. Goodet was saying about the hardest thing of trying to think about PFD holistically is the varying perspectives between the domains and the varying perspectives and goals of what a family wants versus what a healthcare professional may want.
And it doesn't change what you need to do as an advocate for a family and your child. But I don't know if it helps take the edge off.
[00:19:23] Speaker A: I think it does. I think, like, any type of scenario that you find yourself in, knowing who's coming to the table and why they're coming to the table, I think it's important. And I do think it helps to kind of meet in the middle.
[00:19:43] Speaker D: Right?
[00:19:43] Speaker A: It does. And like you said, it's not always successful. That's just that that's how it is. Sometimes you walk away super frustrated.
[00:19:51] Speaker D: Right.
[00:19:51] Speaker A: And just know. I think another thing is we do have choice. We have a lot more choice than we realize.
[00:19:58] Speaker B: Yes.
[00:19:59] Speaker A: And it's not. Yeah. And so feel empowered with that as a caregiver. You know, if you're not getting the care that you want.
[00:20:08] Speaker D: Right.
[00:20:08] Speaker A: Or that you feel that your loved one or child deserves, then start to look into other options. And we do have a lot of choice. Yeah.
[00:20:19] Speaker C: Christina, you make a really good point there. I mean, it is important. Important to know your. Your rights as a caregiver for your child or guardian and to always be able to work as a collaborative leader in that care unit.
[00:20:38] Speaker E: You know, to.
[00:20:39] Speaker C: To be like. Yes.
[00:20:40] Speaker E: And.
[00:20:42] Speaker C: And to kind of try to guide the Conversation towards what you're going for and. And to know firmly what your right is in that conversation. To be able to nudge them.
[00:20:57] Speaker A: Yeah.
[00:20:58] Speaker C: What you know is the right direction because you know best for your child, so.
[00:21:04] Speaker A: Absolutely. Absolutely. As a caregiver, as a parent, you are the expert on your person. That doesn't mean you're the expert on.
[00:21:12] Speaker C: The diagnosis, but you have the mom or the DID degree. Right.
[00:21:18] Speaker A: You got it.
[00:21:19] Speaker B: I love that we've been joking that, you know how so many professionals often have the credentials after their name, but we had. Haley, I don't know if you remember this, but on our consortium, the LE Credential, and that's. I feel like the consortium is full of. Is the lived. Experience.
[00:21:37] Speaker C: Experience credential.
[00:21:40] Speaker B: Yeah.
[00:21:40] Speaker C: It doesn't have to be the mom or the dad.
[00:21:43] Speaker A: It's.
[00:21:43] Speaker B: Yeah, but it's the same thing.
[00:21:45] Speaker A: Yeah, I love that.
[00:21:48] Speaker B: Yeah. And that's a good pivot to the consortium. So how did you kind of find Feeding Matters, find out about the consortium? What interested you about it because it was so unique and new to this field?
[00:22:01] Speaker A: Well, I.
In searching for resources. Right.
And this is why for folks that do live in rural areas or, you know, struggle with being able to physically access supports and resources, I. One of the many reasons I recommend Feeding Matters, but that's how I stumbled upon Feeding Matters was I took the initiative, and I was like, okay, I need resources. Christina needs resources so that I can help Gia. And so I. I discovered you online, and I had the alliance app, and for a few years, to be honest with you.
And so that's how I. And I think you had released the consortium, the idea of the consortium. And I felt that, as always, you know, I want to share our experience, but I really felt like early on.
[00:23:02] Speaker D: Right.
[00:23:03] Speaker A: Early on in our journey, if my voice was heard. Heard and was taken seriously, what would it look like for Gia?
You know what I mean? And I don't mean like, oh, it's a disaster now, and, you know, we're too fed. And it's not a sad story. It's just what would it have looked like? And how could I have done things different and, you know, what would have been available to us in a way? So I really wanted to get in on that conversation. I really felt that I had a lot that I could contribute to that conversation. And I believe, and I believe with every bit of me, that family centered is where the conversation needs to go. As we look at pfd, as we look at ARFID as a disability.
[00:24:01] Speaker B: Yeah.
[00:24:02] Speaker A: So you're getting me all ranged up.
[00:24:06] Speaker B: No, and I love it. But that's, I mean, that is why we originally were thinking about the idea, because, you know, the. It's been amazing to see the research continue, but needing more research. But it's not just needing more research. It's needing research that is family centered, that is listening to families, that is going in the direction, that is making sure that collaboration is possible.
And so your voice being a part of that is necessary. And it's amazing that you were open to kind of signing up for that call and being a part of that change.
It's been really cool to see as it's grown. And so now you're elected vice chair.
What has been your experience in kind of from the start of it to where we are now with the consortium?
[00:25:01] Speaker A: I think in the beginning it's. It's when you're part of any group of anything and you're not familiar with other folks in it. You know what I mean? You're not familiar with what it's going to look like. I think it's kind of like, you know, just feeling, feeling out the situation. So in the beginning, I think it was a little apprehensive in a good way. Just like just learning and remembering other people's names, you know, that type of thing. But then also right off the bat, the excitement from everyone in the group was palpable, right? You could just feel they just were so excited about this and so excited to be part of this movement.
So that has been continuous and I feel it every meeting, you know, just. You can just tell every meeting that everyone is coming and every meeting, it's a little bit different. Who kind of needs to weigh in. You know, it's as it moves around, it's, it's, it's not static, but. And then now it's.
Well, it's a privilege to be able to co collaborate with all the members and to take all of their values and help to, to articulate it for the group as a whole, you know, and it's beyond who's in that meeting and who's on the consortium. It's their loved ones who might not physically be there, but they're with us. Right? And that's who we're speaking for. So it goes beyond who's actually in the consortium. But it's been a. It's just been a privilege. It really has. And I really have enjoyed the process so far. And I just can't wait as it just continues to grow and we continue to you know, really get into the work.
[00:26:56] Speaker B: Yeah, I agree. And that kind of is my next question for you, which is we've done a lot of. We did our, you know, state of PFD research and PFD essentials training that got converted and kind of was the origin of this podcast with Haley and I.
But then we've also done research fundamentals that members are in the middle of right now.
What was your experience with research before coming into the consortium and what have you learned or what's been interesting since? Learning a little bit more about research.
[00:27:31] Speaker A: That's a good question.
I had zero except for the LE experience. Yep. With research and for. For me, it's been really interesting, I guess.
I think I'm going to bring up that perspective piece.
Hearing from, you know, all of the leaders in the project team, you know, sharing their thoughts has been really, really nice because it can be just difficult to kind of shift that paradigm. Right. And that attitude. So that I've really, really enjoyed. And I've enjoyed, you know, someone that likes to write. I like hearing a little bit about that too. Haley, you were sharing your experience in research, and you're just sharing like, some of, like, the little bits and pieces, the details that go into actually writing, you know, that I found interesting. So not to get off on a tangent, but I think that from having no experience into learning what the process looks like and the collaborative process, it's been. It's been really interesting. I've enjoyed it. I didn't know how I would feel about that part of it. Right.
[00:28:57] Speaker B: Yeah.
[00:28:58] Speaker A: Especially because I didn't have any experience. I'm like, how like we to feel about this piece, you know? Well, it's.
[00:29:05] Speaker B: If you don't have any experience with it, and I feel like then it's hard to consume or it's. It feels like a big barrier to be able to be a part of the research. And I feel like that's what keeps that divide in place sometimes.
[00:29:19] Speaker A: Right. And it's like, about writing.
I love it. That's my part. I don't know. I don't know if you might want to pose that to the. The group, but when you were sharing them.
Yeah. Because writing well, the more information we have.
Right. The better that goes with anything. And so I think prior, I didn't know what part of the research I was going to be contributing to. Was it going to be my lived experience? Was it going to be my thoughts and ideas? You know what I mean? Like, what was that going to look like? And so now I know. It's all right. Yeah. And yeah, I was just thinking.
[00:30:00] Speaker C: Yes, that and that. Yeah, correct.
[00:30:03] Speaker A: Yes and yes and yes. But, you know, so the more interactive I am and we all are, you know, the more information we have, I think that's just going to.
Will fulfill our roles, battle better. And again, it's just a really meaningful experience and I think it just better equips us as well as, you know, once this project is finished, you know, as we continue whatever it is that we're doing, you know. So, yeah, I would be fascinating, Fascinated to learn more about that.
[00:30:41] Speaker B: Yeah, that's good feedback.
[00:30:43] Speaker A: Excellent.
[00:30:44] Speaker B: Yeah.
We're in a really pivotal time for the research consortium as we build up to the conference and the consortium meeting in person together with the project team.
Haley, do you want to talk about research prioritization and what our goal is? Just for any listeners out there? And then, Christine, I'd love your thoughts on, as you think about preparing for your LE credential in that meeting, what that looks like.
[00:31:10] Speaker C: Yeah.
[00:31:12] Speaker A: Yes.
[00:31:14] Speaker C: And just in general, for listeners that may not have as much knowledge about.
[00:31:19] Speaker A: What the consortium is.
[00:31:21] Speaker C: So the consortium is a body of 20 individuals with lived experience of either pediatric feeding disorder or arfid, so avoidant restrictive food intake disorder. And this is a body of individuals with that lived experience via either being a caregiver for someone with it or either having had it or having it currently themselves.
And we're bringing these individuals together and they are receiving training about the state of the research and about how to contribute to and be engaged with research about it. And then we're having a research prioritization meeting at the International PFD Conference in February, and they're going to set research priorities, and we're really excited about it. So what else can I give details about that?
[00:32:25] Speaker B: I think, yeah, it's.
I'm excited about it because it'll be the first time that the research world is hearing from a body like this of saying, this is what is important to us for what you're out there researching. We know this field needs to progress. We know that we need to make an impact. We know that these are emerging fields. We know that these are emerging diagnoses, and we know that you're doing your best. But here is what we are feeling as both parents and caregivers of children with PFD and arfid, as well as individuals that have pfd, had PFD or have PFD or ARFID right now.
[00:33:04] Speaker C: Right. Because currently the work isn't family Centered.
I mean, for those listening, you're not seeing me not shake my head back and forth.
Yeah, I have a lot more non verbal than I do verbal.
[00:33:19] Speaker B: I think that's the challenge is it's an education gap of like when we think about making research family centered, it's yeah, we need families to take surveys, we need families to be a part of the research. But this is bringing families at the start, families and patients at the start of it before we even get to any of those other phases of the research.
So I don't know, Christina, if you have thoughts on, as we've been talking about the prioritization both in the consortium and in other meetings, how you've been feeling about it or any exciting things or any questions that you have about it that would be important to talk through.
[00:33:56] Speaker A: I think one of the key areas that we have mentioned is early identification. Right. And how do we do that? And to what I had mentioned earlier, right. In our experience, what would that have looked like and how do we.
And what does that look like?
[00:34:16] Speaker D: Right.
[00:34:16] Speaker A: What does that look like for pediatricians and early intervention?
And you know, that's one part of it, but the other part of it too. And this is what I experience as an advocate and folks and families reaching out to me, even internationally, they themselves don't have the information.
So it needs to be more mainstream. Right. And these terms and these acronyms need to be more familiar.
It's very much, you know, Jacqueline, you've likened it to the autism movement and I do feel it is in many ways.
[00:35:01] Speaker D: Right.
[00:35:01] Speaker A: And how now we have lots of folks that are getting the resources and the diagnosis that they need early on, how do we mirror that in some ways, you know, for our community here with eating and feeding differences? And I think one thing that's fascinating too is the overlaps. Right. We talked about overlaps with PFD and arfid, but we've also, I know that within the neurodiverse community that there's overlaps.
Familial. Right. So like what does that look like for eating and feeding differences at home and families? Other than that, kiddo.
[00:35:44] Speaker D: Right.
[00:35:45] Speaker A: So but when we start having these non threatening conversations that, you know, become more comfortable for everyone and become more mainstream, then that's important. But yeah, that early identification is really important because I think it gives a lot of people a lot of information. It gives, you know, providers and clinicians, clinicians and physicians information that they didn't have. Right. How do you know what's not picking, picky eating? I Don't like that term because I just feel like even if you do have a child that's selective, picky eating makes it seem like a personality profile. Yeah, I don't like it. It's not for me. But, you know, they themselves don't have the resources, you know, and how do you know when. When you have other.
As a. Maybe a person yourself, you know, you could say, oh, I just always thought I had an aversion to this and had a lot of food aversions. Well, you might realize that maybe through your child's diagnosis that, you know, you yourself had eating and feeding differences, so.
[00:36:58] Speaker C: You had to get a better handle on the edge of normal. And then, you know what, what can't you brush off is.
[00:37:09] Speaker B: Yeah.
[00:37:10] Speaker A: What you're not going to outgrow.
[00:37:15] Speaker B: Well, as we get close on time, I. Hailey, I didn't know if you had any other questions for Christina before our last ending question for her.
[00:37:25] Speaker C: I think our last ending question will.
[00:37:27] Speaker B: Be a round out of this conversation.
[00:37:31] Speaker A: Yeah.
[00:37:32] Speaker B: Well, Christina, it's just been so incredible, like, hearing your story and even just personally working with you on the consortium. And Haley and I are just, we talk all the time, how thrilled we are about the consortium. And I know you probably are sick of hearing us say that, but it's just been needed for so long, and we feel like it really is the beginning of transformation for this field. And you're a key piece of that. And so thank you for being with us today. And our last question is really what this is all about and what the consortium is all about. So what, from your perspective, are the challenges that you see in making PFD and ARFID research more inclusive of family perspectives, and how do you think we can overcome them?
[00:38:22] Speaker A: I think that. And this really reiterates and echoes what I said prior, that we need an attitude shift around PFD and arfid.
[00:38:36] Speaker D: Right.
[00:38:37] Speaker A: We need an attitude shift in moving it less away from a medical diagnosis, which it is, but. And having more of a. Again, seeing it more as a disability. Because once you see it as a disability, the framework changes.
[00:39:00] Speaker D: Right.
[00:39:00] Speaker A: And you start to realize that that more than just that patient.
[00:39:07] Speaker D: Right.
[00:39:07] Speaker A: Is coming to see you in that office and understanding that it takes the whole family. Family unit to support that person.
[00:39:15] Speaker D: Right.
[00:39:16] Speaker A: And that it impacts more than just that person. But then, yeah, it's very disabling.
[00:39:21] Speaker D: Right.
[00:39:22] Speaker A: And so it's. It's bringing those perspectives to the table, but changing the attitude around it, I think, is huge in how we are going to Become more family inclusive in the care of that person. And I think it's, it'll be great. Like it's, it's a great way to.
How do I want to say?
It's necessary, It's a, it's a necessary direction that we need to go for that, for that person that's living with these differences and disorder to have a person centered and affirming care, you know, because it's more than just what's on your plate. It's more than just what's in your tube.
[00:40:09] Speaker D: Right.
[00:40:10] Speaker A: Um, so I always say ARFID and, and really pfd, but when you're coming to any type of eating and feeding differences. Right. And now it's all kind of coming together. Um, I always say, I quote Shrek, you know how he, he describes himself as layered, like an onion.
[00:40:29] Speaker B: Oh yeah.
[00:40:30] Speaker A: You may have heard me say this before.
That's how I view, you know, eating and feeding disorders and differences. It's layered. So in order to respect each layer rather than just see it singularly. Right. You really need to look at the framework. And the framework is it's a disability for sure.
[00:40:49] Speaker B: Yep. Well, thank you for this conversation for this time.
Really lovely talking with you, Christina and I hope everybody has a wonderful day. Thanks for listening.
[00:41:00] Speaker C: Thank you, Christina.
[00:41:02] Speaker E: 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.
