#70 - Navigating Pediatric Feeding Disorders: Insights from Feeding Matters CEO Jaclyn Pederson

Sam: 

When your child struggles to eat, it can be frustrating and confusing trying to figure out what’s really going on. So many parents find themselves wondering, "Is this just a picky eater or something more?" That’s where Pediatric Feeding Disorder (PFD) comes in. It’s a diagnosis that’s still pretty new, but it can really help explain those ongoing feeding challenges. Side note - if you’ve been following me a while, you know my opinion on the term picky eating, if not make sure to check out episode #33. 

But back to this episode - you really are in for such a treat. In this episode, I’m joined by Jaclyn Pederson, CEO of Feeding Matters, to talk about what PFD is, how to deal with insurance and reimbursement (because we know that’s a headache), and how to get started if you’re feeling overwhelmed. Jaclyn shared so so many valuable tips, and  I know you’re often busy and listenig on the go, so don’t worry I’ve also written down everything you need to know over on the blog, so you’ll find a link for that in the shownotes!

But first, let me tell you a little about Jaclyn: With more than a decade of experience in program development, Jaclyn Pederson’s broad knowledge of programming in the public and social sectors includes program and strategic initiative design, fund development, special events, grant writing, and community engagement. A system thinker and positive team builder, she uses transformational leadership principles to develop energized and efficient workgroups that influence significant organizational and systemic change for all affected by pediatric feeding disorder –such as the development of the expanded PFD Alliance. Jaclyn also manages Feeding Matters’ strategic partnerships with numerous professional associations including American Speech-Language-Hearing Association (ASHA), American Society of Parenteral and Enteral Nutrition, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN).

And without further ado, here she is!

Just so you know, this blog is based on my and my guests’ personal experiences, and research I’ve done as a pediatric occupational therapist. None of the below is medical, occupational therapy, or feeding therapy advice. When you buy through links on this page, we may earn a commission. Learn more about affiliate links.

Sam: Hey, Jaclyn, I am so excited to have you here today.

Such a fan of Feeding Matters.

It's an organization that really just provides

so much support to parents

and I cannot wait for you to tell everybody about it.

So can you start by telling us a little bit about

who you are and the work you do at Feeding Matters?

Jaclyn: Yeah, well thank you so much for having me.

And it's just, uh, I'm always

so thrilled when people know about Feeding Matters

because we do so much to try to share our information

with people and raise awareness

of pediatric feeding disorder,

that it's always wonderful when someone does know about us.

So thank you for that introduction.

So I am CEO of Feeding Matters.

I've been with the organization for over 11 years.

I started and I started

with the organization without really knowing

what feeding problems, feeding struggles were.

My background is in nonprofit management,

healthcare innovation and systems practice.

And so I was really interested in like,

how are we fixing an issue that exists in the system?

And so I started as our volunteer coordinator,

our grant writer, and just kind of kept

taking on more things at the organization.

And then during the pandemic we needed to, um,

have a new CEO

and we really wanted to keep our values intact.

And so I started as the interim

and then became the full-time CEO in 2020.

Um, and at that time I had a seven month old

and so I am a mom to two children.

Um, I have a 5-year-old right now and a 2-year-old.

They're about to both turn five and two

and one my older one very kind

of typical feeding development journey, um,

but still taught me a lot about what, what took like, what

to experience, but also like

what families are experiencing in terms of

how much information they receive and how little information

and how confusing information is.

So it really helped me think about it from a different

perspective of like just information about

feeding development in general.

And then with George, who is my 2-year-old, he did struggle

with feeding and and eating from day one.

And so that taught me kind of our side

of it at Feeding Matters.

And so Feeding Matters.

We are a national, um, advocacy

and education organization for children

with pediatric feeding disorder.

And that's a fairly new description,

but, um, PFD originated with the work

of Feeding Matters in in partnership

with many other physicians and organizations,

but we define it as a child

that's not really eating appropriate for their age

that maybe has dysfunction in one of four domains.

So medical domain feeding, skill domain, nutrition domain,

and the psychosocial domain.

And so the way that we think about PFD is, um, you know,

really wanting to make sure that a, we're raising awareness

of this condition because not a lot of people know about it.

It is a very young and new diagnosis.

Um, it's very closely related to avoidant,

restrictive food intake disorder are fit, um,

which is honestly, you know,

what PFD could turn into if we're not addressing some

of those domains early on

or if the psychosocial impact is just so great that we need

to work through the mental health pieces.

And then, um, beyond raising awareness

and working on our advocacy efforts, we really work

to support professionals through education and resources.

And then, like you mentioned to start is, um,

supporting families.

Families are at the heart of our organization.

We have a suite of family support programs to make sure

that they are not alone in this journey.

That we are there to walk alongside them,

to share information, to be a listening ear,

to empower them, um, to do all the things.

'cause uh, it's a very lonely journey

for families and we're here for them.

Sam: It really is. And so many

of the parents in this community are actually really new to

feeding disorders, feeding difficulties.

And so I love that you jumped right into pediatric feeding

disorder because a lot of them don't even know

that that's a term, right?

Most of the time they're coming in

and they're saying, Sam, is it just picky eating?

Is it normal eating? Is it something more?

And so when it comes to pediatric feeding disorder,

how do you guys define that?

Jaclyn: I think that is one of the best questions

and honestly the one of the most unanswered questions

because it is so intangible

and every single person has a different definition of

what picky eating is.

And so it can be very challenging, I think both as a parent

and as a professional

to know when do we need to be paying attention?

And that's why I like for people to have a general awareness

of what pediatric feeding disorder is so

that we can realize, okay, we know

that toddlers do experience some picky eating.

We know that that can be exacerbated

and get worse it based on how their,

their feeding is progressing.

But we also know it gets better over time, uh, as well.

And so that's a very challenging question

to ask yourself as a parent.

And we have a questionnaire that has six questions

that really kind of asks some screener

questions about mealtimes.

But I think one of the biggest

or two I guess that I've been thinking about recently

has been like, what's the history look like for

their child's feeding development?

Because I think the research shows that we are really trying

to understand what's happening for children,

maybe if they're coming outta the NICU or early on in life

because we do a lot of infant studying,

and then we kind of go through this like

parents maybe figure it out or maybe don't

and have to figure it out on their own

after their child turns one

through like three when we're then starting

to see them show up in the research again.

And so I always try to emphasize we need

to be understanding the history a little bit better.

Was there difficulty breastfeeding?

Was there difficulty transitioning to solids?

What did that feel like as a home and an environment?

Was there difficulty gaining weight even back then?

And then what does stress feel like right now at mealtimes?

Um, because I think

because the term picky eating is used so frequently,

it can feel dismissive for families

and feel, just feel invalidating for their experience,

um, because it's so easy to brush off as a phase

or very typical, but the stress

that they're undergoing in their mealtimes

and their daily lives multiple times a day are,

it's extraordinary

and it's bringing all of our families to a, to their needs.

And, um, so those are the two things I like to hone in on.

I think as time progresses

and as this work continues,

we will get some stronger definitions,

but I think anything

that feels like picky eating is worth being aware of

and asking yourself more, more questions

and asking how that stress in history looks like,

and then is it persisting?

Um, and that I feel like is an indication that we need

to look a little bit deeper, even if it is

quote unquote picky eating.

Sam: I love that you pointed out

how does mealtime feel for you?

Because so many of our parents, they come back

and they're like, well, you know, I was told

that this is just a phase or just they're gonna grow out

of it, or let's wait and see.

You are like, are you struggling every single day?

Yeah, it's every single meal feel like,

just like this massive battle.

Or do you not even know where to where to start, what to do?

So I love that you pointed that out.

Jaclyn: Yeah. And it may be that like you're, you don't qualify

for a pediatric feeding disorder yet

and we're just kind of being aware of it,

or you won't qualify for it yet,

but like, let's let's unpack it a little bit

and understand what is stressful.

Because I do think that as families are trying

to raise these concerns,

that these appointments are limited.

Um, and so they're trying

to articulate their, their concerns.

And even myself, I've been an advocate, uh,

for several years and it took me a lot of time to be able

to be like, no, this is a real problem

and I'm trying to communicate this to you.

Um, and so I think it can be really

intimidating in those appointments as well.

And so then it's easy to just be like, oh yeah, it's,

you know, definitely a phase.

I'll come back in three months. Um,

and so I think that's why we try to say like, for

for our families, like, let's empower you, let's equip you

with some communication tools, you know, we're listening

to you because it's, it is a serious issue.

Sam: Yeah. So you talked a little bit about getting help

and appointments, so let's dive into kind

of the therapy world of it.

One of the things I was really excited to talk

to you about on this podcast was reimbursement, insurance,

financial implications,

because it's a lot, therapy can feel very expensive,

very time consuming.

So what do you think a parent should know when it comes

to therapy and the cost of therapy?

Jaclyn: I think that's such a big question.

It's, I I think one of the biggest things

that I hope people know about feeding therapy is

we really want to understand

kind of what we're getting into.

And we really want to make sure that we are aware

of all four domains of pediatric feeding disorder

because we don't want to be

progressing in one area when there's an undiagnosed medical

challenge in another.

Um, but from a jumping into feeding therapy standpoint,

it can look very different depending on what the needs

of the family are, where they are located,

and, um, you know, what they envision for their success.

One of the things that's important for feeding matters is

that families get to define their success.

Um, a lot of times you hear it discussed in literature

that like, this is a successful this,

but is it the family's version of success?

And what do they want? They might not necessarily.

I mean, it could just be, can my child sit at the table

for a certain amount of time

and that's my version of success.

And so I think really honing in

and asking yourself, you know, what, what do I want out

of feeding therapy for my whole family?

It's not only my child with PFD or uh, ait

or maybe pickiness if there's not a diagnosis yet,

but what do I want?

Um, and then as a family, what,

what do we need to be thinking about?

Because I think what I see for families sometimes is

we might not be at a place

where we're ready for feeding therapy.

And I would hate for a family to spend all of that money

hoping for a silver bullet when

we've gotta just take it slow.

And, and that's another thing

that I think is really important that gets left out.

Sometimes it's okay to take it slow.

It's okay to take that pressure off, figure out

how do we need to be managed medically

and nutritionally to make sure we're stable, to be able

to dive into feeding therapy.

But when we're there and we're in

and we'll, we're full-fledged,

that is also a another pivotal point for a family.

So that I think that could look like, just to kind

of give an overview, there is, um, for families, you know,

sometimes it may be like

through the early intervention program,

sometimes feeding therapy is offered there.

Other times it's like private practice

or community-based therapy organizations.

And that could look like going to an office

or someone coming into your home.

Um, and then there are the more hospital-based

or more integrated programs

that sometimes are a little bit intensive,

but are often a higher level of care.

Um, and there's any mix of those altogether.

Sometimes someone's coming weekly,

sometimes they recommend less than that.

Sometimes I've even seen intensive models

that aren't at hospitals

where they're doing like three day sessions

with someone coming into your house.

So there's, there's lots of options.

And I think that's what's so great about, uh,

where feeding therapy is as a field

and really trying to learn what works best for families.

Um, another piece to feeding therapy

beyond defining your success

and defining like what is gonna work best for your family

is really the payment piece of that.

And I, I know you kind of referenced that,

but, um, it, it is very challenging.

I think it's something you need to make sure you're talking

to your insurance provider before you start therapy, um,

because I think families find themselves in the middle

of feeding therapy and then they feel, uh, stuck almost.

And, and so you wanna have all of your questions

and your options figured out beforehand.

You wanna make sure that the person that you're working with

does work with your insurer.

And, um, and,

and so there's just a lot of questions you need

to ask beforehand, and it's not the best, uh,

and easiest, I guess, uh, therapy to access sometimes.

And hopefully we can make that easier over time.

Um, but hopefully we can do a lot to prepare

to make it an easier time once you do start feeding therapy.

So I don't know if that answered your question,

but I was like, I've got all the all ideas

of how to answer this.

Sam: No, it definitely did.

And I, I think exactly what you said,

it really is not the easiest therapy to get reimbursed,

but I love that you pointed out to call your insurance

and ask questions first, because I think that's something

that gets missed.

We so rely on, you know, the provider,

they tell you, oh yeah, it's covered.

Oh, oh, we think, you know, we think this, we think that,

but a lot of parents don't even know what questions

to ask ,what they could do.

What kind of questions do you recommend they ask?

I kind of have some that I always tell parents to ask for,

but I'd love to hear from your side. 

Jaclyn: Well,

I was like, I wanna know your questions.

Sam: So I would say for me, I usually I'll ask them to see,

number one is feeding therapy covered.

Is there a certain type of provider that they cover it for?

Maybe they cover dieticians, but they don't cover OT

or speech to, you know, what kind of provider.

And then the codes, right? 

Do they cover certain codes? Do they cover out of network?

And just for anybody who doesn't know,

when we're talking about codes,

when your doctor gives you a referral,

there's usually a diagnosis on there

and there's a code that's associated with that.

So I've got a question

for you in a minute on that, but okay.

When we talk about codes, it could be such a small change,

two codes that look almost identical

and one is covered and one is not.

Um, so those are usually the big things

I tell parents to look for.

Did I miss any that you would recommend?

Jaclyn: No, I definitely think those are important.

I think there,

because of where we're at with the understanding

and awareness of pediatric feeding disorder

and what is needed in feeding therapy and

because so much of it seems to be up for discussion

and that's where a lot of insurers

and payers get to make the rules on what's paid for

and what discipline is covered and and whatnot.

So I think that's why I do like the idea

of it being a partnership that a provider may have worked

with a certain payer and, and knows like kind of what works

and what works based on their contracts.

But a family can also bring a different perspective.

And I kind of think about it from a like patient

advocacy lens of being able to say like, this is

what we're struggling with, and we get that on record

and we're able to say like, these are the things

that I'm hearing and seeing that we need, I've talked

to my physician, they have referred me,

and I want to better understand what you pay or cover.

Um, and so I think getting very clear in understanding that,

um, also could help any other issue

that maybe comes up afterwards.

Because I think what happens is then, you know, you go

through the process and then if there are things

that are like kicked back

or different things like that, there's, I mean, there's lots

of things on our site even too where you,

there's like appeals that we can do

or you can jump on the phone with your provider if you are,

if you are getting back.

But I think because there is such a lack of awareness

and understanding of the, just the condition

of PFD in general and

because there is so much misunderstanding of who can treat

what and can treat which codes, um,

that there is some like education that can help too.

And I think families can help with that.

But I also think that's a provider piece too.

Um, so for those providers listening out there, like

that's a, that's a, a how you, you, you advocate too.

You do that through your connection with your payers

and your contracting, but you also do it in

your clinical documentation.

That is where you're able to really showcase the importance

of this, how you are thinking about this in the long term

and how you are making those incremental goals,

um, and milestones.

And that kind of helps build your case as well.

Um, 'cause from a payer perspective,

they just wanna make sure that they're covering

what they should be covering.

And you have seen instances where they're trying,

they're paying and paying, paying and making no progress.

You've gotta be able to communicate that

and look at insurance problems as communication challenges.

Um, and just trying to figure out like

what are the alternative ways to be able to

provide the information that's needed, um,

for this communication challenge.

Sam: Yeah, the documentation kinda like you said is really

so important to point out where, where

that family is really struggling,

what is the impact on their life

on a day-to-day basis?

Jaclyn: Yep.

Yep. And that's why,

so we build pediatric feeding disorder

as a diagnosis on this thing called the ICF,

the International Classification

of function, disability and health.

And it really is all about participation in life.

And so how detrimental is this condition to this child

and family's participation in life.

And so using those, those using kind of that as a framework

for how you're building your, your, uh,

treatment is helpful.

Sam: And so my question for you on that, I

was treating in a outpatient clinic

before pediatric feeding disorder 

Had ever really become a diagnosis. 

We were talking about it, we were hoping for it,

but it wasn't there yet.

Now I'm no longer in an insurance-based clinic.

I work mostly in acute care. Mm-Hmm.

So when it comes to reimbursement, how is that working

with pediatric feeding disorder?

Is it something that is started

to be recognized by insurance?

Or do parents usually need

an additional something supplementation from their doctor?

Jaclyn: I think it's incredibly complex

and really differs based on what state you're located in,

who your provider is and the,

and honestly who your payer is too,

and their awareness level of it.

Um, so I think the success

that came from pediatric feeding disorder being its own

diagnostic code was we're able to point to this

as a particular diagnosis.

Um, but we are hearing that there are some times

where it is more challenging to get it covered

or in this is where the state-based comes in.

There are some states where SLPs, for example,

are like the primary go-to feeding therapist,

uh, feeding specialist.

Or there's like, in other states,

it's like OTs are the primary feeding specialist,

but a family is just trying to find whoever works.

And so if they happen to be with someone who is not the like

deemed and,

and I often think it's not written down,

I think it's just generally accepted, um,

based on like culture almost, it seems.

And so I think that that becomes a challenge.

And so we still have a long way to go to make sure that,

that the, the treatments are lining up

with the diagnostic codes.

I have heard, um, from a lot of professionals that some

of the existing CPT codes, so not only,

so PFD is a diagnostic code, so a diagnosis,

and then oftentimes you do pair, like you were saying,

you pair that diagnosis with treatment and

or assessment or any of the other things.

And so I have heard, uh, from professionals that some

of the CPT codes that exist, um,

either don't cover the full extent of what's needed

for feeding therapy because they

weren't built for feeding therapy.

Uh, so we are looking into, you know,

what other coding things need to happen,

but honestly a lot of it is the educational awareness piece

and that's where the appeals come into place.

That's where helping educate on PFD.

I think one thing that's, I feel like an easy win

for most providers is making sure

that like if you are engaging with a payer, they understand

what pediatric feeding disorder is.

And so even just like sending the paper

to them can be a helpful start.

Sam: And you guys have some papers online, right? For parents?

Jaclyn: Yeah, we have a bunch of papers.

So like, I mean, definitely use us as a resource.

Uh, you know, you're not, I as professionals,

like you're not alone in this either.

Um, we're here for families, we're here

for professionals.

Sam: You guys have some great handouts.

I love printing out your handouts for people.

Jaclyn: Oh, well that makes me feel really good

because, you know, we're here to raise awareness

and support you and support families,

but we can only do that as good as, you know,

the stuff coming out of our organization.

And so we, um, really try to listen to what is needed

and try to meet those needs

and that listening is really important to us.

Sam: Awesome. Well, talking about your website, I kind

of mentioned that a lot of the families in this community

are kind of new, right?

They are just starting this journey

and even logging onto a website sometimes can feel

so overwhelming for them.

So where would you recommend is like the best first

place to start on the website?

Is there something that you would go to first?

Jaclyn: So if I'm a family member, the best place

to go first is an orange button on our

homepage that says get help.

And that takes you to a roadmap.

And, um, that is what we experience with families as well.

It can be so overwhelming to know when to reach out

and how to reach out.

And so this roadmap is kind of like a

choose your own adventure.

Whatever level of commitment you want to do is, is works for

where you're at in your journey.

Um, but it starts with asking some of the questions

that are in our screener about, you know, like, does,

does your child let you know when they're hungry?

How long does it take your child to eat?

Do you have concerns about your child's eating?

So it starts with some of those questions.

And then it also takes you through some

of the other resources on our website,

which include like a provider directory.

We have a family guide, which is a, um, kind

of like a 101

and it goes over some of the common tests

that goes over some of the questions you

can ask your providers.

It goes over how to take care of yourself

going through all of this.

Um, so it's really a helpful resource in that sense.

And then the biggest thing that comes out of

that family support roadmap is if you do wanna talk

with another family member who has been there

before, um, one of the, I mean,

this program is used in many different ways.

So any family along their journey can call

and be connected with someone

and they can get support right away, often that day

or the next day they can talk to someone.

But one of the things that ends up, I,

I think ends up being a really helpful piece from this

program is if a family is, is on that journey of trying

to figure out whether the,

their concerns about their child may need

a feeding tube or not.

And so some

of those like pivotal decision points in your child's

journey are really important to be able

to like lean on support.

And so I know that that is when we've seen a lot

of parents call is like, I'm struggling with this decision,

um, I need to talk to someone else

and help me through this decision.

So that's also something I mentioned as well.

Um, it is, it's a lot of information and it's overwhelming.

And so we try to make that easier with

that family support roadmap, um, just to, to try

to give a family as much information as they're ready for.

Sam: And so when it comes to that meeting another family,

do you guys pair them based on what they're going through,

what their question might be?

So like if somebody is looking at maybe

that g-tube question, has somebody else already had that?

Jaclyn: Yep, that's exactly, so one of the primary questions

that we ask a new family coming in is

what are they interested in talking with someone about?

Because everybody needs something a little bit different.

Um, and I mean, all of our children are

so different in this aspect.

Like, uh, one child with PFD is one child with PFD.

And so what we do try to pair on is like, what is the intent

of that family and connecting?

Is it just like, I wanna know everything

and everything that we'll connect them with someone

who can like, just really go through everything with them.

Um, if it is a decision point

and they're trying to figure out, am I thinking about a tube

or not, or is it, um, we are in this infancy stage

and I'm scared for what this means as we start

to transition off a bottle.

Um, there are lots of different spaces for connection.

Um, and you may not know what you want yet,

but it's, it's okay and we talk you through it.

And, um, but yeah, to answer your question,

that is definitely one of the considerations.

Sam: And another thing I actually saw on your website recently

is I think your grants are open right now. Is that correct?

Jaclyn: So I meant to share

that when we were talking about covering feeding therapy.

So w we know

that like even if you can get feeding therapy covered,

it still may mean that you're paying outta pocket

for those appointments.

Um, even just like copays or anything like that.

So it's still incredibly challenging

and that's why it is important to be thinking about like

as a family, what, what are we pursuing

and how long are we pursuing it?

Is it a time-based or is it for a really long time and what,

and working with our insurance to make sure that's done.

Um, but that doesn't mean that it covers everything.

There's blenders, there's trying 14 different bottles

before the first one sticks.

There's trying different utensils and tools.

There's, we've heard from families in our economic impact

study that had to replace their floors

because of all of the vomiting.

So there's like, there are expenses

that are loosely attributed

and in that case directly attributed to PFD and living and,

and trying to grow and thrive, um, in this circumstance.

And so we do offer some scholarships for families.

We do it once a year.

And so right now our, um,

our applications are open through the middle of October.

Um, to be able to get $1,000

to cover any expenses, we ask very little questions about

where the expenses are going to, as long as they're, um,

going towards something that is

because of your child's PFD, then it works.

And honestly, you don't have to have a PFD diagnosis either.

So there is an application where you fill out a form,

you tell your story, you can support

that you are undergoing, um, any sort

of feeding challenge PFD or fit

or even undiagnosed, um, feeding problems.

And so then we do select 10 families that can receive

that, that award.

And the hope would be to grow

that over time while we're also trying

to make sure it's easier for families to get that coverage

and get that treatment as well.

Sam: I've had some families who have received the grant from

you and it has been life changing for them.

The decision between getting, getting the support

that they needed and not getting it

Jaclyn: Really, Sam? so you've known 

Individuals? Oh, that's amazing.

Because we, we've been doing this program

for 3, 4, 4, I think we're in our fourth year.

Um, and you wanna make

that difference in a family's life?

And I will tell you the committee

that reviews those applications

and has to figure out who gets the funds versus who doesn't,

that is one of the hardest decisions that anyone is making

inside our organization.

'cause we wish we could give it out to everybody

and that's why it would be our wish that this program grows,

um, while also fixing the system side of it.

Um, but I'm so grateful to hear that. That's amazing.

Um, that's what we wanna do for families is be a part

of their journey in whatever way it's, it works out to be.

Sam: Yeah. I will tell you that it was not a client of mine,

it's just somebody that I know.

Um, but it was the difference that they no longer get therapy.

They have a happy little eater

and they could not be happier.

So it really did change their life. 

Jaclyn: That's such an

Amazing story.

Oh my gosh. Well thank you for sharing that with me.

Um, that's honestly the best thing I've heard all day.

That's amazing. That's what it's there for.

Sam: Yeah. So really I am, I'm such a fan of Feeding Matters.

Jaclyn: Yeah, you aren’t kidding. You're a fan. I love our fan.

So I am like so thrilled to meet you

and be in this space with you.

Sam: Oh, thank you. Well, I have one more again,

big loaded question for you.

Yep. But as a mom, as somebody

who has now experienced feeding challenges yourself

as somebody who works with this all the time, insurance,

non-insurance, what is one piece

of advice you'd wanna leave parents with?

A big loaded question.

Jaclyn: I like the big questions.

Um, I mean that's what feeding matters is here for, is

to answer those big questions.

So I think

as parents and often as moms,

we are incredibly hard on ourselves.

And I think that

sometimes we get so focused on listening to providers,

listening to experts listening to social media, that we kind

of lose sight of our gut and our intuition.

And I think sometimes it takes reconnecting with that, um,

to be able to progress

and progress in whatever way works for you.

I have heard so many instances of families kind

of redefining what that meant for them.

And that meant either seeking a second opinion

or bringing more data to an appointment to empower

and advocate for their child.

Um, that meant if a certain therapy wasn't working,

taking a break and stepping away from therapy for a while to

take the pressure off, I think it's okay to listen

to your gut and it's also okay to ask for help,

but giving yourself grace in the

meantime is really important.

Sam: Oh my gosh, I love that. I love that.

I have a six month old at home right now,

and so you are speaking to my heart

of like new mom. Yeah. Yeah.

We're just so hard on ourselves, Sam.

Like it's, it's just too much sometimes

and we can't be everything

and they need a happy parent

more than they need anything else.

Um, I mean they, they definitely have needs,

but uh, we can't, we've gotta put our own life mask on first

or whatever that phrase is.

Sam: And I love that, especially for parents who have

so much information coming in towards them, right.

They've got so much going on.

So following your mom, guilt, oops,

like your mom gut, you can tell where my brain is,

your intuition and really leaning into that.

Jaclyn: Um, that's why when you asked the one thing I was like,

well, follow your gut, but also give yourself

Grace. It's

like you can't, it's too much. It's too much. Yeah.

Sam: Well, Jaclyn, thank you so much for being here today.

I cannot wait to get this in the hands of all these parents

who are so desperately looking for help.

I'm gonna try and get this out now

before mid-October so they can apply. 

Jaclyn: I would

Love that because I was like, I was worried about it

because it is coming up on that deadline.

So Yeah. So if you're able to share with your families,

and if you are a family, please reach out

to us Feeding matters.org.

Um, on our website we have our financial assistance program,

or you can email [email protected]

and ask some information there too.

Sam: Yes. And we will link

that get help link so that you can go help help right away. 

Jaclyn: Sounds great. Well, it's been a

pleasure talking with you too, Sam.

Some incredible resources from Feeding Matters:

• Feedingmatters.org 
  
  
• Instagram.com/feedingmatters
  
  
• Facebook.com/feedingmatters
  
  
• Family Guide: https://www.feedingmatters.org/family-guide/ *NOTE: this is currently under revision, with a Spanish guide coming in future years
  
  
• Financial Assistance Program: https://www.feedingmatters.org/family-assistance/ *NOTE: accepting applications through Oct 11. Only open seasonally (every Fall)
  
  
• PFD Alliance: https://www.feedingmatters.org/about-the-pfd-alliance/
  
  
• Power of Two: https://www.feedingmatters.org/resources-support/family-support/request-family-support/
  
  
• PFD and ARFID Overlap: https://www.feedingmatters.org/pfd-and-arfid-overlap/
  
  
• Family-Centered PFD Research Consortium: https://www.feedingmatters.org/consortium/
  
  
• Feed the Cause: https://www.feedingmatters.org/feed-the-cause/
  
  
• 2025 Conference: https://www.feedingmatters.org/2025-conference/
  
  
• https://www.feedingmatters.org/pfd-alliance-app/
  
  
• Diagnoses related to Feeding Challenges

References: 

1. https://www.feedingmatters.org/wp-content/uploads/2021/09/Toolkit.pdf 
2. https://www.feedingmatters.org/what-is-pfd/