Episode Transcript
[00:00:01] Speaker A: Wouldn't it be great if you could.
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[00:01:07] Speaker A: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
[00:01:17] Speaker C: Feeding Does Matter welcome everyone to Feeding Does Matter. I'm Jacqueline Peterson. I am here with my co host Dr. Haley Estrom. How are you doing this morning?
[00:01:29] Speaker D: Oh, pretty good, Jaclyn. How are you?
[00:01:31] Speaker C: I am doing pretty well. It's so nice to be able to have one of the team members on today. So I'm actually really excited because we've got Heidi Vandermolen today for our guest and last week we shared a podcast of an interview that I did with one of our moms, Cheyenne, and it was a really great example of our Power of Two program at Feeding Matters and it's a program that you and I have talked about and we share a lot with our community and it was just such a great example of the confidence that can come from support and having someone in your corner and how important that is. And so we all thought that it would be great to bring Heidi on to share about all of the different ways that we support families. And if you are out there listening and are a family member that's looking for support, some support or looking for information, we thought it'd be helpful to kind of options that you have at Feeding Matters to help you. So Heidi, welcome. How are you doing?
[00:02:30] Speaker A: I'm doing well. How are you guys both?
[00:02:34] Speaker C: Pretty good.
[00:02:34] Speaker A: Yeah.
[00:02:35] Speaker C: Heidi is Feeding Matters senior Program Manager overseeing all of our family support programs. But Heidi and I have also known each other for like 10 years because I, I you're coming up on your 10 year, I think at Feeding Matters. Go ahead and share a little bit about yourself.
[00:02:52] Speaker A: Thank you. I first found Feeding Matters when I was a mom struggling with my son's feeding. And at the time, my son didn't have a diagnosis, but he could not breastfeed. He couldn't bottle feed. And so that was the start of my journey. I found Feeding Matters. At the time, it was Popsicle. And from there I just, you know, you go through a journey with your child when he struggles with feeding, then you get a diagnosis and you do all this research. And since I had to quit my job to take care of my son, take him to appointments, procedures, surgeries. Yeah, Feeding Matters was amazing. So I think I started volunteering with Feeding Matters. So I actually, my first experience was.
[00:03:39] Speaker C: More than 10 years. Heidi.
[00:03:40] Speaker A: Yeah. So I. I started out volunteering for the first luncheon, and I listening to the speakers, there was a mom who talked about her journey. And I was like, you know, I can do this. I want to talk about Hayden's journey, my son. And so the next year, I spoke at the event, not realizing that the first year it was maybe 100 people, Jacqueline. And then the next year, it turned into like 200.
[00:04:08] Speaker C: Several hundred.
[00:04:09] Speaker A: Yeah. So it was wonderful being able to be in a room with people who actually understood and just sharing, you know, our journey. And then Kaden got to be preschool age, and I just wanted to get back into the workforce. And since I was doing so much with Feeding Matters, I remember going into the office and it was Jacqueline and Chris, you guys were hiring, and I was updating my resume, and everything was Feeding Matters, Feeding Matters. So I applied for the position, and here we are almost 10 years later. And my job is a joy because I get to work with so many amazing parents and providers. And as a mom, I know Hayden is thriving because of everything that I've learned from all of you.
[00:05:00] Speaker C: Well, and so many of our families learn from you, and that's what we hear, like, time and time again. And your vision for how families need support and what we can do to support them is really powerful. And I think you're just such a great listener for families and what they're going through and what they really need, even if they may not know that they need it themselves. Do you want to give us an overview of what some of the family support programs are at Feeding Matters?
[00:05:28] Speaker A: Yes. So I'll start with the power of two, because you mentioned Shannon and Chris being the first parent to parent match. I do want to mention. So Cheyenne was a parent who needed support, and she was matched with Paula. And before Cheyenne came on, Paula actually was a mentee who, you know, she googled late at night trying to find support for her Penny, who had a G tube. And Paul and I were connected because we both did a blenderized diet for our kids. And so it's interesting when the power of two truly is at its best, it's when you have Paula, who is a mentee, become a family coach.
And then Cheyenne was supported so much by Paula that she wanted to give back. And so now she's a family coach and she's helping people through this journey. And for the parents who, you know, we had, and Haley too, we had a really hard journey. You know, like every single meal, every single day, every single bite.
[00:06:34] Speaker D: Right.
[00:06:34] Speaker A: So it's almost like we, we went through that to prepare us, to make sure that no one else goes through that alone. And it gives me goosebumps because, I mean that's, that's truly the power of two. And we have different matches. A lot of families just need that one time phone call. Sometimes it's just to figure out, okay, well what is the power of two? Like, is there a fee? Is it, like, what are their requirements? And so we, we make it really easy for the family. They fill out a request for support, we ask them what their top concerns are a little bit about their child. So that when family coaches see that this parent needs support, they can kind of look and say, oh, oh yeah, I have that, you know, I have an NG tube for my child. Or we went through that. Or you know, we are familiar with this type of, you know, feeder. And so it works out really well. We have a one time phone call, we have a three month match or a six month match. And we currently have 61 active coaches and our coaches both. Yeah, it's, it's really exciting because they're, they're everywhere. We have Arizona coaches, Colorado, we have an Australian coach, a Canadian coach. So again, you know, PFD and arfid, it's not just in one city, state, country, it's everywhere. So our coaches are really, again, they go through a training, they learn about PFD and arfid. Actually, we're updating our training to include ARFID because now so many families that are in need of support, their child has been diagnosed with arfid.
[00:08:20] Speaker C: Yeah.
[00:08:21] Speaker A: Even though, you know, part of the, part of the intake form is how long have, has your child been struggling with feeding? And so by the time they reach us, they've been battling this for years. Their child is now 7 or 8. But they knew something was not right since breastfeeding or maybe bottle feeding. So, again, the power of two is just.
It's a sense of community. It's a sense of, wow. They really get it. Like, I don't have to explain myself that I fed my child when he was sleeping, or I had to whistle to get him to take his bottle, or I woke up with dread. These family coaches, they offer emotional support. They even, like, they'll share Feeding Matters website resources, and then they also can share their journey. And I think part of, you know, like, just having that initial contact, hearing another person's story can be so. It can be like a ray of sunshine, you know, where this person is just devastated. They have been struggling feeding their child for two years, and now they get to talk to someone who gives them their confidence back or who says, hey, you're doing everything right. This is not your fault. Because so much of it is guilt. You know, I mean, like, I.
My son's 15 and a half, and I still wonder, like, ooh, oh, like, should we be doing this? And. And then I kind of, like, pull myself back in thinking, okay, like, calm down. Let's just move forward.
[00:10:00] Speaker D: So, Heidi, I remember when I called, I talked to Chris, Chris Lynn, and I remember it was so helpful and validating because she.
She. The things she talked about just gave us a lot of triangulation with one of the providers that we had just encountered that was really turning things around for us. And it was. It was just really valid just to hear that coming from someone else who had already figured things out.
And. And the. The Power of Two program is still a resource that I. I love to have in my pocket, because as I'm doing research and interviewing people, if I. If, you know, or as I just talking to people, too, like, if I'm hearing them with a struggle, I can always be like, hey, there's this program. Have you heard about it? Usually? No. There's this Power of Two program.
It's immensely helpful. There's no cost.
[00:11:11] Speaker A: Research does show that changes the lives of that parent who's struggling.
So I love that you're able to share that, Haley.
[00:11:21] Speaker D: Me, too.
[00:11:24] Speaker A: And I will say, Chris and Shannon are still such an inspiration to me. Like, when I'm talking to parents, like, I just channel them because when I was struggling, they were. It. Like, any question I had or any feelings, like, they just. They grounded me.
[00:11:41] Speaker C: So it's a great way to describe it, Heidi. It's a grounding.
And so that is our flagship family support program program, Power of Two. And so if this does sound like A program that is of interest to you. You can head to feeding matters.org and hit the Get Help button and it'll take you there. Or even reach out to us on Instagram, DM or any way to contact us. And Heidi will make sure you get to the place that you need to get to. What are some of the other programs that we have, Heidi?
[00:12:09] Speaker A: Yeah, so I do want to mention we do have a family support line for families. So if they're not sure you know where to go, they can always call the number or infoeedingmatters.org and a lot of times families can't leave the house because they don't have anyone to feed their child or the window of opportunity for them to be gone is very limited. So we offer virtual support groups. They're limited to 10 to 12 participants, so you don't have to constantly do introductions. You have a group of of parents that know each other and they know their stories. We also have our Family Guide. We all know how complex PFD is and arfid. So it really goes over the four domains of pfd. It talks about tips and tricks from real families with lived experience. So that's available on our website. You can download it. We're in the process of adding our newly Revised guide to PFT.
[00:13:14] Speaker C: So that Family Guide 2.0.
[00:13:16] Speaker A: Yep. That will be up for PFD ARFID Awareness Month in May. We also have our Family Support program. We do know families pay incredible out of pocket expenses. So in 2019, we launched our family assistance program where we award $10,000 per year to families. The first few years, we had $2,500 awards for four families. Last year we wanted to be able to support more families, so we had 10 $1,000 scholarships. The program usually launches in July, so we'll have that on our website. It's a really easy online application. Again, we don't want families to go through extreme measures to get the funds they need to help their child. So stay tuned on that before you.
[00:14:07] Speaker C: Move on to the next program. What are some of the things that you've seen families need the money for? Because I think so often we think it's like very specific, but because feeding everything. Maybe talk a little bit more about that.
[00:14:21] Speaker A: Yeah, so. And great question, Jaclyn. So last year families really needed it for therapy insurance. If you have private insurance, they typically only cover like 25 visits per year. For the children who need intensive, a lot of times that is not covered, especially if you're talking about an Inpatient, out of state intensive program.
So there is a spending plan template that they fill out and we do have suggested items that they need covered, like specialty formula. One thing that I'm really, really excited about that this program can help cover is the parent well being. We all know parents struggle with the mental well being because the guilt, the failure to thrive, diagnosis, and just the overwhelmingness. So these funds can be used to see a therapist for the well being aspect. And a lot of families in their application wrote that down. So it's really exciting to see that they're putting on their oxygen mask. Right. To help their child. Let's see. New carpeting for when a child vomits and they have to get new carpet. That's some of the stuff that people.
[00:15:45] Speaker C: Don'T realize that's impacting families lives immensely.
[00:15:49] Speaker D: Yeah, yeah.
[00:15:51] Speaker A: Basically anything regarding your child's feeding, it could be formula. It can be specialty items. It can be. If you're going into an intensive program, I will say the funds cannot be used for reimbursement. We know insurance covers a certain amount of things. So if insurance only covers a portion of an intensive program, the families can utilize the funds to cover the rest, but it just cannot be used for reimbursement for something that's already taken place.
[00:16:24] Speaker C: Thanks, Heidi. Thanks for diving into that a little bit more. Yeah.
[00:16:27] Speaker A: A recent program that we just launched and are super, super excited about is our family first. Your path, your progress, your community.
And this was developed, it was Jacqueline's idea. Brilliant. But we really wanted a program specifically for families because we know there is long wait lists. There are long wait lists to be evaluated, and then there is a long wait list for the type of treatment. And so families are really left sort of just waiting. And so this program was developed to really focus on, again, the well being of the parents, to teach them advocacy skills while they're waiting to create a community. And this course is eight weeks. It is every other Monday or Wednesday for 75 minutes. It has a facilitator. We have lesson plans. It's just so wonderful hearing the families connect with others and getting them to think about, what are my goals? Do they match up to my child's goals? And while they're waiting, to really journal about, you know, celebrating the wins. And I think it was Heather who in one of the podcasts said, like, celebrate these tiny wins because they're huge. And I think a lot of times families forget about that. So this is a way to really prepare them for what's next in their child's treatment. And it's also sharing education with parents. So the consensus paper on pfd, the article on ARFID and PFD interlapping, so that families are geared with the education so that, you know, if they're having a discussion with their child's doctor or if they have a disagreement, giving them that confidence to be able to speak up and that they know their child best. Because a lot of times we forget that, you know, like, especially with all the appointments and different opinions of doctors. So this program is just really amazing. And we're piloting this program, started two weeks ago, and then August and September will really be launching the full program.
[00:19:00] Speaker C: Heidi, you and I have talked about this a lot in the sense that we see so many families that are being driven to a next level of care, and that may be a suggestion to go to a different state for a program, a suggestion to find a different program. And so our families are left trying to navigate what does the next step look like and are often met with, we can't see you for 15 months, et cetera. And so I think what happens is that next level of care, whatever it looks like, gets kind of built up as the silver bullet answer that we're going to go from 0 to 100, but we just need to wait a year before we can do that. And so I think for us, this program was really important in the sense that we wanted to be able to say, okay, like, you know, you, you, you want to do something different. You want an example level, you want a different perspective, you want something different.
In the meantime, while you're waiting, while you're preparing, how can we prepare as a family? How can you prepare yourself? And you've really done a nice job with this program and taking a mental health perspective and really leaning into trauma informed practices and really allowing time and space for introspection and really being kind of aware and proud of the journey that you've gone through to get here and empowered for whatever journey looks like next. And so it's been really cool to see some of the results of that time together because I think when you're moving so fast, you're not taking 75 minutes to just think about, right, what do mealtimes for me look like or anything like that. Any of the questions that we stop to ask ourselves, because feeding is all consuming for our families and we need to support them where we can.
[00:20:53] Speaker A: And I will mention several of our family coaches are in this cohort.
There are a few that are really in the throes of it. Right. Like they just, they can't. Their child is still struggling and no one seems to be able to improve meal times. So it's been great having them connect with a family coach during this process because again, it's building a community. And then on the opposite end, we have a family coach who her child is older, but she's going through some hard times. And so she was able to connect with one of the participants and just seeing those relationships build because PFD and arfid, it's an up and down roller coaster. Right. Like some days we're really doing great and we can offer support for someone who is struggling and then sometimes we need the support. And it's been really a pleasure and a privilege for me to be along on this journey with these families.
[00:21:57] Speaker D: And it's going to be. It's four sessions, so it's four, four.
[00:22:05] Speaker A: Classes, 75 minutes each and then it's over a course of eight weeks. So it's every other week. Every other week, yeah.
[00:22:17] Speaker C: And you receive like a participant guide and educational info and materials as you kind of get guided through the course.
[00:22:27] Speaker A: We try not to give the parents too much homework.
We, you know, it's really encouraging that interview perspective of what are my goals, what do I want from the child and do they match up with the treatment that we're being told is necessary? And again, you know, just sharing, sharing resources in the community. Right. You know, sharing where to find things or maybe when to share them with someone that you're mentoring. So.
[00:23:03] Speaker C: Yep. So we'll share more as this program develops and as it launches more publicly. But we're learning a lot in the pilot phase and iterating on it. And it's just been a dream of ours to really support the population of families that we know is just waiting and waiting for that answer.
And so hopefully this can help support along that wait.
[00:23:23] Speaker A: Yeah, and I do like, I envision this being shared with clinics, hospital based programs, you know, outpatient therapy. Because again, when you're in an intensive program or you're in the waiting room or in feeding therapy, I think that's the time to really connect with other people.
[00:23:45] Speaker D: Where did the participants come from?
[00:23:49] Speaker A: We have three in Arizona, I want to say three in California, Connecticut, Colorado, Kansas, Tennessee.
I think there's one more.
[00:24:01] Speaker C: All over is your answer.
[00:24:04] Speaker D: It's a nice representation.
[00:24:06] Speaker C: Yeah, it is.
[00:24:07] Speaker A: It is, yeah.
[00:24:08] Speaker D: It's not from any one waiting list or feeding program. So you've.
[00:24:13] Speaker C: No, yeah, it was, it was done from just our listserv. Families.
[00:24:19] Speaker A: Yeah. We started using our virtual support group participants.
So we offered them a spot first because when our virtual support group ended, it was three months every other week. Families still really needed that support and that connection. So we pulled several of the participants from our virtual support group over to the family first. And then just word of mouth, our family coaches shared it with their mentees. And we actually even had Some, some students SLPs join because they wanted to. Everyone is so wanting to help families. They want to hear from families, they want to know how to better improve their practice. And so for this pilot program we, you know, we have a few non parent participants. And I think it's really been great because I can see like, I can just see the wheels turning when they listen to the families talking about their child or a specific activity. And I just, you know, again, it is specifically for families, but it's been nice having that other perspective because then in turn we're kind of educating them on how to better support families.
[00:25:39] Speaker C: Uh huh. I was gonna say that's almost like a great educational experience for someone. And how great for those students to start their journey of knowing and listening to families as experts.
I think that that's a great way to start your kind of career in feeding.
[00:25:56] Speaker A: Yeah.
[00:25:57] Speaker D: And for them to be engaged in those conversations around congruency of goals between the caregivers and the child and the provider.
[00:26:07] Speaker C: Yeah.
[00:26:08] Speaker A: And I think it's important, I think it's important for families to realize just how passionate and how much providers really care. Because sometimes you don't see that. And this is, it was so apparent at the conference.
[00:26:22] Speaker C: Right.
[00:26:22] Speaker A: Like you just. The family voice was everywhere. And so I really, I think it was just, it's great letting families know that, hey, you may have a therapist that isn't the right fit, but they're trying. Right. And we need to just have these conversations. So.
[00:26:39] Speaker C: Yeah.
[00:26:40] Speaker D: And just one more thing about the family's first program. Can you say about like what informed the program and because I, I know that this came from a wealth of knowledge across all the experiences and research and just all the other family support things that Feeding Matters has done and that you have done, Heidi and Jacqueline. But I think.
[00:27:08] Speaker A: I mean, I'll say when Jacqueline kind of had this program.
[00:27:15] Speaker C: I will say it's not just my idea. It was like a collection of lots of conversations, lots of experiences.
[00:27:22] Speaker A: I did talk to several psychologists, eating specialists from different programs who were already involved with Feeding Matters or the Psych Summit. And so listening to them talk and then also conversations with families who were waiting to get into an intensive feeding program or who were in like a break of episodic care. So really forming what healthcare professionals are seeing that families need and what families are going through while they wait. We kind of developed a program based on that. And Jacqueline, feel free to add anything.
[00:28:04] Speaker C: Yeah. And we also engaged an educational and curriculum designer to help support the course development. And in that instance, we used a lot of different modalities and other tools to build what it looked like to become a self advocate to help support empowerment. And then we also pulled in some of the trauma informed work that we've done. And Heidi didn't mention this before, but it's just because it's who we are. At Feeding Matters, we in the last year really revised all of our family support programs from a trauma informed lens. And we had an expert come in and help us make some of those changes. And we felt good because they were really small changes overall. We were meeting a lot of the necessary steps to becoming trauma informed. And so we made sure that that was incorporated into this program. Well, and then because it was really support and an intervention for families, we also really selected our facilitator in a really intentional way. And she's a trauma informed mental health professional as well.
[00:29:11] Speaker A: Perfect.
[00:29:12] Speaker C: Yeah. Yeah.
[00:29:14] Speaker A: And Jaclyn, thank you for bringing up trauma informed care. Because real quickly, another thing we offer going back to the power of two for anyone who. Yeah. For anyone who wants to give support, become a family coach. We, through our trauma informed audit, to make sure that all of our programs were following a trauma informed care model. We have a webinar that was presented by Rose Phillips, who is our trauma informed expert. She's a therapist and it is so amazing. We offer this webinar for free for family coaches or any volunteer who really wants to view it. Because when you're supporting someone, we've. Everyone's talked about compassion fatigue or, you know, when you're listening to someone talk about their child being in the emergency room because they're not growing or maybe they're aspirating silently. When you're hearing those stories, it can flood your memory. It can put you right back into that trauma. So we really are very careful with our family coaches to give them the tools so that they're not being re traumatized and to help support the parent who is maybe living that trauma but can't see a way out of it. So thank you for bringing that up because I think sometimes we forget we have that.
[00:30:44] Speaker C: No, no, I, I just thought it Was good to share. So thank you for sharing it in more detail. We have two questions left. Heidi, I think you mentioned a few times the different resources on our website. Do you want to just kind of give an overview of some of the different things that people can find on feeding matters.org yeah.
[00:31:01] Speaker A: So we have our learning center, which hosts, you know, several of our former conference presentations.
They are free to families, so I always recommend to families. You know, if you're up at night and you can't sleep, click on one of the videos. We have amazing videos. Then we also have our resource library, which you can see podcasts, articles, books, products. I do want to mention that we have templates.
So for any family who needs a letter of medical necessity, you can just print that template, type in the information, hand it to your doctor. Done. We have food logs. So if you've been asked to keep track of what your child eats, what they poop, what you know, what's happening, you can just print that off, download it, print it, and use it. So those are a few of our resources. I also want to mention we have a Facebook group for our power of.
[00:32:03] Speaker C: Two families, and we have our provider directory is really important.
I think a lot of people find really helpful things on our blog as well.
[00:32:16] Speaker A: The blog. The PFD stories.
[00:32:19] Speaker C: Oh, yeah, the PFD stories.
Yeah. So definitely check out feeding matters.org as we wrap up our time together. Heidi, Hayley and I always have one final question that we ask our guests. Hayley, do you want to ask Heidi?
[00:32:33] Speaker D: So, Heidi, what do you see as some of the biggest challenges to patient and family centered PFD research?
And how do you think we can overcome them?
[00:32:46] Speaker A: Well, first of all, I think you guys are doing an amazing job. Like, having the consortium, having parents passionate about research is huge.
So when I talk with families, research always comes up with it. Because for me, and I think Heather kind of said, well, I'm not smart enough to do that. I kind of was in the same boat. Like, it's research. Yikes. That's not in my comfort level.
So I think educating families that, yes.
[00:33:18] Speaker C: She'S definitely doing research.
[00:33:20] Speaker D: You're doing it, Heidi.
[00:33:22] Speaker A: I just feel it's so important to bring research up to every family that we talk to, whether it's pfd, arfid, Share your voice, because there just isn't enough research on PFD and arfid. And so I'm not sure if that answered the question. Haley, Jacqueline.
[00:33:44] Speaker D: I'd like to think the answer is we can do it. Together.
I'm not trying to put an answer in your mouth, Heidi. I'm sorry, but I think that like the initial reaction might be, you know, kind of yikes. But I'd hope that maybe after some time and like working together that people might realize that we, we can do.
[00:34:10] Speaker A: It together for sure.
[00:34:13] Speaker D: And that's the hope with the consortium and, and all these things is that we can maybe after the initial, like, I don't know, like, you know, maybe we can learn about it and work together.
[00:34:26] Speaker A: I'm all in.
[00:34:30] Speaker C: Love that. Heidi. Well, thank you so much for joining us to share more about all of our family support programs. You do an incredible job making sure our families are heard, their stories are shared in a way that honors their experiences and really appreciate you being here today. Thank you everyone.
[00:34:47] 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 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 at info@feedingmatters.org.
[00:36:00] Speaker D: You are not alone.
