Hi everyone, and welcome back to another episode of Airway First, the podcast from the Children's
Airway First Foundation. I'm your host, Rebecca St. James. My guest today is Anne Marie DeMarco.
Anne Marie is a pediatric occupational therapist providing in-home visits with a focus on child
development in Fairfield and New Haven County, Connecticut. She specializes in sensory processing,
developmental delays, primitive reflex integration, as well as children with autism and ADHD.
She currently works in the birth to three setting and takes a holistic approach to treatment.
She is passionate about educating both caregivers and parents regarding a child's sensory processing
needs while promoting overall growth and fine motor development. Anne Marie's goal
is to ultimately improve a child's independence with their activities of daily life.
You can find out more about Anne Marie at annmariot.com.
And now let's jump into my conversation with today's guest, Anne Marie DeMarco.
Okay, great. Thank you for joining us today, Anne Marie. I truly appreciate it.
Oh, of course. Thanks for having me. Absolutely. Absolutely. All right. So before we jump in for
parents that might not know the difference, what is the difference between an occupational therapist
and a physical therapist? And when would their children need to come to you?
Yeah. So physical therapists are wonderful. They focus mainly on mobility, restoring function,
maybe reducing pain and preventing further injury. So occupational therapy is a little
bit different because we help people be able to do the things that they want and need to do
as independently as possible through meaningful occupations. I always say if you think of an
occupation as an activity, it becomes a little bit more clear. I think we hear the word occupation,
we think of a job. We think a job. Yeah. Right. So occupations can be
feeding, sleeping, toileting, showering, play, leisure. There's a whole host of occupations
that we partake in on a daily, weekly basis. So if occupational therapy, we really want to focus
on like, for instance, I'm a pediatric therapist. So a lot of what I do looks like play. And a lot
of what I'll do is taking certain toys or activities and that the child already prefers.
And we find a way to make it a little bit more therapeutic to work on some of the goals that
the child might have. Okay. So kind of building on that. So you're looking at
tracking to skill sets and benchmarks based on their ages as you're going through this. So
what is a session going to look like with you? Yeah. So it really depends. I have,
you know, I work with infants and even up through kindergarten, grade school. I have some older,
older, I'd say teenagers maybe that I'm working with. And now I'm even getting some adults that
have some disabilities too, just because these day programs and I live in Connecticut,
the day programs just are not, there's no availability for spot, you know, for spots for
these people. So it really just depends on the age. So, you know, with infants, a lot of what I do is,
you know, just making sure that families understand tummy time, floor time is really important.
Working on like visual tracking, you know, everyone says to me, you know, what do you do with like,
a one month old and a two month old? And it's like, Oh my gosh, you can do so much with them,
you know, you can do tummy time and they can do visual tracking. And, you know, there's,
there's a whole host of, you know, different things that you can do. A lot of the toddlers,
even like some of the kiddos that are like kindergarten, I'd say first, second grade,
a lot of those kiddos that I work with are autistic. So what I focus on is like socializing,
play attention, just, you know, those foundational skills so that when they're in school, they can
sit and attend and learn in a group setting, because that's usually very difficult for them.
So I incorporate tons of movement into my sessions. I mean, I'm never sitting down.
A lot of the kids, especially, you know, after a school day, the last thing they want to do is sit
down and show them, you know, a board game or read a book, which those are all great things. But
a lot of the kids that I work with crave a lot of that vestibular input, which is like movement
and their balance and that different, you know, that sense. So, so they crave a lot of movement.
So we'll do things like obstacle courses, you know, I, there's like things that you can,
I have a swing that I'll bring with me, you know, just sort of visits and hanging up on the,
on the swing set outside and the kids will go in the swings for core strengthening,
visual tracking, bilateral coordination. So it's very much tailored to, you know,
what is meaningful to the child, like what they enjoy doing. And then we can kind of go from there
and, you know, try to work on, work on some of their goals. But it definitely varies.
I think from, you know, from person to person, like OT is very individualized. So
it really just depends. And what is, you know, we hear this phrase tummy time a lot.
And, and first to admit as a mom, I don't know that I did it right. I know we had to do tummy
time. Not sure I did it right, but I tried. What, what are some basics, you know, as parents,
we could be doing as tummy time that actually helps strengthen our, our little ones, their cores,
their skills. What, what are some things we could do? Yeah. So, you know, floorplay is really good
when infants are, you know, when they're within the first like few months of life, they can see
black, white and red the best. So like you see a lot of people have like contrasts to them.
There's a ton of, you know, very colorful toys for us. We're like, Oh my gosh, that's, you know,
beautiful and colorful. Well, for infants that black, white and red. So now there's more and more
like books. And I think, you know, like cards, like different, just different tummy time mats that
incorporate those colors that can help infant be engaged. And I always say, you know, if, if you,
as the parent can get on the floor with them, just your, you know, you're probably the most engaging,
you know, engaging toy, right, right. That, that really that they have. So, you know, tummy time
is definitely important. Some of the little ones that I work with will even do like some
side lying. So, you know, just helps like shape the rib cage, especially my little ones that have
reflux. I work with a lot of pre knees that are just out of the NICU. So, you know, they might be
experiencing maybe they've had like, you know, a G tube or there's something that sort of inhibits them
from really being on their tummy. So we'll try to do, you know, some side lying, even just having
the infant like up on your chest, we'll use sometimes like a therapy ball and just kind of rock them
slowly back and forth, you know, side to side, you know, and some, some infants are okay with it,
and they love tummy time. And then others, you know, depending on, you know, if they have reflux
or tortoise, like they might not take to it so easily. So those are all kind of factors we have
to bring in and sort of, you know, work on. But I would say, you know, it does sort of again,
like depend on the infant, but usually if we make tummy time a little bit more fun and engaging for
them, you know, like we can't really like put them on the floor and walk away won't work for a
couple of minutes. But, you know, getting down on the floor with them and really helping them engage
is a great way to kind of extend out how long they'll they'll engage in tummy time.
And should we be working with them on things like, you know, pushing up on their arms or rolling or
absolutely. Yeah. So, you know, just things like reaching out in front of them or yeah,
pushing, pushing up, you know, you can have them like setting up like toys, kind of like in a
circle around them, have them like pivot, that's a good, you know, kind of like those milestones
that we don't, you know, we hear about the, you know, the setting up and the rolling over and the
crawling, but like in between those, there's some pretty awesome like mini milestones. So
like pivoting is a really great one or even like just rocking on their hands and knees learning to
reach just to develop that I hand coordination. You know, I use bubbles with, oh my gosh, everyone,
I mean, everyone loves bubbles, but that's a really great activity, you know, as they get a
little bit older to start to really visually track and work on I hand coordination, reaching all of
those things, all those skills too. Okay, I like that. Who doesn't love bubbles though, right?
I know bubbles are great. So in a previous podcast, which I'll include a link for those that didn't
hear it with Brittany Murphy, she talked a little bit, a little bit, pardon my voice,
about primitive reflux integration. And I've heard you also talk about that as well as sensory
processing. Yeah. So if you would just take a minute to kind of explain what both of those are and
how they relate to the work that you're doing with children and their development.
Right. Yeah. So primitive reflexes, they develop in utero, and they're really present for survival.
They facilitate development, and they also help with the birthing process. So, you know, for instance,
we all have, you know, there's tons of these reflexes, but we have, you know, one that comes
to mind is like the palmar reflex. So when there's an infant and they're small and you put your
finger in their palm, they automatically close their hand around your finger. Right. So that
reflex is supposed to go away between, you know, six to 12 months. When it doesn't go away and it
lingers and say like a, you know, a five year old or a six year old, seven year old, that's trying to
write or use a spoon or a fork to feed themselves. They really don't have good control over, over
their, their motor movements because each time something, a stimuli touches, they still try to
your hand. Yes, they're going to grasp it. And so, you know, you look, you know, you want to see
like that, you know, this tripod grasp with the, you know, an eight year old that's writing and
printing and even, you know, I'll hear some older, older kids that I work with say like, you know,
my hands like, I just get so tired so quickly that they can't do the monkey bars or they can't
hold on to like one of those like a trapeze and, you know, swing and pick up their back. They just
can't really do a lot of those things. So with the retained reflexes, they can impact, you know,
reading and writing, they can impact toilet, toileting, toilet training, a lot of emotional.
Yeah. So the one, you know, this, this one is the spinal gulant and that helps with the birthing
process. So like when the infant is coming down the birthing canal and a stimuli touches one side
of their back, they flex towards that, that feeling towards the stimuli helps them kind of make their
way down. A lot of infants are born via C-section. You know, it's like, so they don't get that.
They don't have the ability for that reflex to emerge and then the reflexes is then retained.
So that has a lot to do with bowel and bladder control. It's closely linked to auditory or
auditory sense or sense of hearing. So, and, you know, kind of going on, you know, off of that
with retained reflexes, when those are present, you always have like some kind of confusion
within the sensory system. So with sensory processing, you know, I have a lot of kids
that I work with maybe will, you know, they might not want to touch, you know, the sand
that the kids are playing with in the sandbox outside at school or they might, you know, be
kind of engaging in some unsafe behavior, like jumping off something that's too high or climbing
up the furniture in the house because they're seeking a lot of input and trying to regulate
themselves. But they don't really know, you know, the right way to do that. Obviously,
a lot of them are young, but with retained reflexes, when you start to see the confusion
in the sensory systems, because reflexes help the sensory systems to mature. So if like our
foundation is kind of off a little bit and those reflexes aren't integrated,
it affects their sensory processing as well. Okay. Wow, that's fascinating. Yeah. Yeah,
I would never have put those together. That's wild. Yeah. And I think like, you know, we don't
talk about like sort of a singular sense that, you know, we just I just mentioned that has a lot
to do with movement and balance that's located in the inner ear and then proprioception, which is
it basically is so, you know, if you see kids that, you know, someone comes home with the
groceries and they run over and they want to like lift up something really heavy and like put it
in the fridge or, you know, pushing a heavy box across the floor, that has a lot to do with
signaling to their joints and muscles, it signals to their brain where their body is. So heavy work
is something that is usually very regulated to these kids. And sometimes they don't get it as
often as they as they need it. So that proprioceptive sense, something like, you know, we'll do like
animal walks, like, okay, walk like a bear or walk like a crab. So you're getting more input
to your muscles and joints that signals to your brain. Okay, this is where my body is. I'm doing
it. And I, you know, I feel, I feel a little bit more regulated. Sometimes like weighted equipment
will come in or like even when we chew, like, you know, crunchy snacks or things that are more
difficult, that take a little bit more effort to manage. You know, there's a whole host of ways
that you can provide like that proprioceptive input. And even the vestibular input, like, you
know, swings are balancing on a, you know, along a curb on a walk outside, you know, and a lot of
kids gravitate towards these things. And we're like, Oh, yeah, hi for you. Or, you know, it's
right, we have to kind of, you know, calculate that risk. But sometimes we want to encourage
some of that because it really does help the sensory systems and usually will help to regulate the
child if we can sort of, again, like, help to make some of these activities a little bit more
therapeutic for them that they're already engaging in. Right. So just support it in a safer way,
maybe. Right. Yeah. Yeah. I like that. And you kind of touched on this, but as far as things like
tongue tie releases and chronic sleep, how can occupational therapy assist these children?
Yeah. So I don't, I don't specialize in like, I would say, you know, a lot, there are some
amazing OTs that specialize in like the pre-op and the post-op for the tongue tie, like the release
and everything. I'm kind of in the realm right now where I screen, thankfully I met Brittany and
I'm able to refer to her for the time being. I hope to learn a little bit more about that.
But I'm able to sort of screen for it and see, okay, there is a restriction, let me refer out,
but there are plenty of OTs that have amazing experience, you know, with that. But as far as
sleep, I mean, going back to occupation, sleep is a main occupation. So if we are not sleeping well
and we are not breathing well, which I, you know, I just recently looked at my case load, again,
85% of my case load has some type of airway disorder. Whether or not it is, you know,
it is being treated or it's formally diagnosed, there is something there. I've, you know, I've
referred to, I'll refer to Brittany, there's an ENT that's in town that I refer to as well.
But sleep issues, you know, it's, again, like every other occupation is impacted when we're
not sleeping and when we're not breathing well. So, you know, in sleep issues can arise from
retained reflexes. So the spinal gulat, as I mentioned before, that can impact bedwetting.
So if a child has a retained reflex, so they're already not sleeping well and breathing well,
which we know also breathing can be affected or bedwetting can be affected by not breathing well
too. But, you know, the spinal gulat, so if they're waking frequently during the night anyway,
and then on top of that, they're wetting the bed, you know, four or five times a night,
which also can disrupt their sleep. You know, children that are in a fight or flight, so our
moral reflex that there's another one called fear paralysis has a lot to do with our fight,
flight, freeze cycle. So when they're not breathing and they're startling and they're
waking up, it's like, you know, those, those hormone, the adrenaline and the cortisol are
pumping through them because they're not breathing, it's survival for them at that point. So,
right. A lot of different issues are arising because of the reflexes, but also because these
kids aren't breathing well at night. I mean, the number of children, you know, in my intake form,
I have a little portion about like, you know, just asking about snoring and the, you know,
the restrictions or all restrictions and that they have reflex majority, like I was saying,
of these children have, you know, do, do have some type of issue with their, with their airway.
Even, you know, add their adenoids are enlarged or their tonsils and it's visible to me, you know,
their palate is narrow. I know there's a, I always forget the name of the scale, but it's,
you know, when they open their mouth and you can't even see the uvula in the back, I always
forget the name of the scale. But anyway, I mean, it's, it's clear to me almost immediately when I
look at, when I do an evaluation that there's some type of breathing issue going on. That's
definitely, definitely impacting their sleep. So, you know, as an OT, there's, there's so much that
we can do to help with sleep. And again, like a lot of it has to do with the sensory processing
piece. So maybe, you know, for instance, bath time. So maybe bath time is more alerting for some of
our kids as opposed to calming. So like instead of doing a bath like right before bedtime, we can
move it to the afternoon and maybe, you know, that linear swinging is more calming for them. So we
can do that. So there's ways, you know, even like weighted equipment that we can use. So there's
like weighted lap pads, vibration. I have like a pillow that like vibrates a lot of the kids
really like that. So there's certain ways to get a child to sort of like regulate before bedtime.
Even, you know, I talk about sleep hygiene too. So a dark room, maybe, you know, environmental
sounds, if they like the rain or, you know, whatever the case may be, you know, we talk about
no screens before bedtime, you know, not using the iPad or the TV. So there's a lot to do with
the sleep hygiene. But I'm really, I think as I'm entering a little more into your world, I'm
standing and I'm telling, I'm very straightforward now with families. And I'm telling them like,
if your child isn't breathing well, there's not much that I can really do. I mean, we can try
and we can see, you know, how it goes. But, you know, so many of these kids, as soon as I see them,
they have an open mouth posture. And they're not breathing through their nose and they can't breathe
through their nose, you know, whether their adenotes are enlarged or it's a motor planning issue where
they just have not been breathing through their nose for however many years they're congested and
large adenoids, whatever the case may be. And again, like I will work on those things, but if they
can't breathe through their nose because there's so much, yeah, right. So I'm definitely still
learning, but I feel as though, you know, like I was saying before with sleep, if we're not breathing,
we're just not getting adequate sleep. So right. Right. And I think the malanpati scale,
is that what you're thinking? Yes, that's it. I can never ever stick to my brain. The malata,
I'm going to write it down right now. Yes, that's it. That's it. Yeah. It's like, it's a, it's a crazy
word. Malanpati. Yes. And I'll put it for parents that haven't seen that, I'll put a link
to that as well in the show notes so they can see it because it's, you know, once you see it and then
you look at your child, it's very eye-opening. Yes. I guess, yeah. It's just, yeah. And that's the
thing. When parents have this knowledge, they can then advocate. I feel like, you know, you don't
know what to look for. And actually it's like, you know, you don't know what you don't know. I'm
still, you know, I'm still learning about certain, you know, areas too. But right. Like if they can
see, okay, this is, this is typical and this is maybe atypical and needs some internal.
You're listening to Airway First with today's guest, Ann Marie DeMarco. You can find out more
about the Children's Airway First Foundation and our mission to fix before six on our website
at childrensairwayfirst.org. The CAF website offers tons of great resources for parents
and medical professionals, including videos, blogs, a recommended reading list, comprehensive medical
research, podcasts, and so much more. Parents are also encouraged to join the Airway Huddle,
our Facebook support group, which was created for parents of children with Airway and sleep-related
issues. You can access the Airway Huddle support group at facebook.com backslash groups backslash
airway huddle. Are you a medical professional or parent that is interested in being a guest on the
show? Or do you have an idea for an upcoming episode? If so, then shoot us a note via our
contacts page on our website, or send us an email directly at info at childrensairwayfirst.org.
As a reminder, this podcast and the opinions expressed here are not a medical diagnosis.
If you suspect your child might have an airway issue, contact your pediatric airway dentist or
pediatrician. And now let's jump back into my interview with today's guest, Anne-Marie DiMarco.
Definitely. Yep. And I really think we should rename this podcast,
you don't know what you don't know, because I swear we say it at least once an episode.
Yeah. And I feel, you know, even, you know, I was talking to Brittany recently, I did
her podcast a few months ago, and, you know, we were talking about that. And I, you know,
I feel like too, we're talking about torticollis and its relationship with oral restrictions.
I didn't know about that three years ago, you know, I didn't know to look in a child's mouth if
there was something muscular happening, you know, and obviously, of course, like I do feel terrible
about it, but I, you know, I also feel for these parents that are like, oh man, like if I knew this
sooner. So I think it's, it's, it's, it's wonderful because you do help to bring, you know, some of
this information into families homes because it's not something that is really talked about that often.
It's not. And another important thing is it's not just with parents. I mean, we don't know,
but there's so many providers that, you know, at least I'll say it or they'll say it every
episode, you don't know what you don't know or we didn't learn this in med school. I didn't know it.
Right. Yeah. We're all just kind of figuring this out together, which is really, and I know we
touched on this a little bit, but, you know, more specifically, how does occupational therapy help to
rebuild a child's synaptic connections? Yeah. So when you look at like, you know, that concept
of neuroplasticity, especially with refluxes, like retained reflexes, you basically can
rewire the brain and you can, you know, it's, it's kind of that, you know, you know, use it or lose
it concept, but a lot of kids that have these retained reflexes, like you'll see them compensating.
So by that, I mean, you know, they sort of have, they know, like, and some of the, I should also
say too, some of the children that I work with just have retained reflexes and sensory processing.
They don't have like a formal diagnosis, so they might not get in school. So cognitively, you know,
they really understand like, I'm not doing that the same way as my friend is doing that, but I'm
able to get it done, you know. So for instance, a child that has an STNR reflex, which has to do
with the upper and the lower body, you'll, you'll see them a lot of times they kind of like anchor
their feet around the chair. So like, put their feet behind. I know exactly what you're talking
about. Yes, because when their lower body is, is like flexing, it affects the upper body. So for
them to sit in a chair and write something, it's like their upper body wants to do the opposite
of what the lower body is doing. So for them to kind of flex their body, it's not, it's not like
a normal movement for them. Like I get to sit here and I could write and it's perfectly fine,
but I have all of that going through my head if I have this retained reflex and it's very difficult,
but they're, they're getting it done, you know, their handwriting might be a little bit sloppy,
or they might rush through it, or, you know, but they're, they're getting it done. So with that
concept of, you know, neuroplasticity, as we kind of work on the exercises and activities to help
integrate these reflexes, you're sort of creating new connections in the brain. So that you don't
have to compensate quite as much. They can kind of sit with their feet flat on the floor, and
they're able to kind of maintain that postural control and engage like in a, you know, a handwriting
activity or a worksheet or something in school. So that's why a lot of, you know, I can come in and,
you know, when I come into the, into the home, I'll do a lot of these exercises and the activities,
but the parent really has to make sure that they're carrying over, otherwise it won't,
it won't have the same effect. Right. Right. Which makes sense. Yeah.
It only makes sense. So one of the things as parents that if you have a child that's
socially behind or underdeveloped, we hear a lot of is play groups, play groups are the answer.
So is that, I don't want to say always because you're not supposed to say always and never, but
more often, is that the right approach or is there another avenue that we should be looking at as
parents? Yeah. I mean, I think that, so birth to three is a wonderful resource. I still work in
like early intervention a couple hours a month. So it's ages zero through three. And every state has
a variation of it. They're called, you know, different titles and different. Okay. But that
would always be like the first, the very first thing I recommend is calling birth.
I'll have something that will even call me and they'll have like a two year old or, you know,
one and a half year old. And I always ask them, did you contact birth to three first? Because
you can get like a team of people. So it could look like a social worker, behavior therapist,
an OT, speech therapist, physical therapy, it's a team of people that are kind of with you and,
you know, they're able to sort of, you know, your child has to be eligible for the service,
which they can have a valuation. But even if they're not eligible, they'll still provide you with
resources like play groups or, you know, there's a, there's a lot out there that they can provide
to you even if your child isn't eligible for it. Yeah. I mean, as far as play groups, a lot of
children that I work with do, do attend them, but sometimes it takes a little while, you know,
just because, and I think especially during, during COVID too, the, that social piece was
sort of taken away from the sick noise. Yeah, all of us. Yeah. Very, very difficult for a lot of
these infants that were born during COVID to then attend a play group with so much,
they were over simulated pretty much immediately. Sure. Yeah. So, you know, I think again, like
sensory wise, it really depends on the child, but play groups can be a wonderful, a wonderful thing.
I feel as though if your child is kind of over simulated easily or quickly, it's always okay
to just even talk to the whoever's running the play group before beforehand and just say,
listen, we're going to come and maybe only for three minutes and then we're going to leave,
you know, so they don't have to be there. I always like to find, you know, play groups or
music groups where they can move or they don't have to just sit down because they're probably,
yeah, they're probably not going to. So, I mean, parents can always reach out to them beforehand
and ask these questions. Are they able to move? Can we come for five minutes and can we, you know,
ask these questions before and even bringing some of those maybe regulating toys for them. So,
you know, something like a little like fidget popper or they can eat a snack during, you know,
while they're kind of just watching. I'll have some kids that, you know, even my little toddlers
that I work with that I'll sit with like on the outside, the outside sort of of the, you know,
the play group while everyone's in the middle there. And they seem to watch, like they've seen
to sort of observe for one, two, maybe three, you know, three sessions and they feel a little bit
more confident. And I think, you know, but the beauty of births of three, two is, you know, if
the child is eligible, we go out into the community also. So having an extra support
and someone that's sort of, you know, used to it and is, you know, it's okay if your,
if your child is crying, like that's what kids do. If they're scared. And I always recommend
to like a lot of the play groups that are local to my area are at libraries. So I always just say
bring them, you know, bring them to the library before you can even talk to them. This is where
the play group will be here. This is where the music class will be next week when we come back.
You know, so you can do a lot of that like prep work sort of to sort of prepare them.
But play groups are, you know, it's a wonderful way to get some of that socialization in,
especially if they're not in like daycare or if they're, you know, maybe being, you know,
watched at home by a family member and they don't have the opportunity
really socialize. Play groups are definitely great. It's just about finding the right fit.
Sure. And one of the things we see a lot with children with airway dysfunction,
anxiety and depression, just they travel together with it. So, you know, how can occupational therapy
help these kinds of kids? Yeah. So, you know, I think too. So usually what happens is
with the retained reflexes, and it's so hard to know, you know, like what,
what came first in a way, you know, but with these reflexes, I do see a lot of kids,
especially like I'd say eight, nine, 10 that do have anxiety and depression.
They do have this airway disorder, but maybe it hasn't been diagnosed yet. So in, while I refer
out in the meantime, we will work on the fight, flight free cycle, because a lot of the kids that
have anxiety and depression that I'm seeing do have those retained reflexes. So the morrow and the
fear paralysis. So we'll slowly kind of start to integrate those. And then in addition to that,
we kind of will find some of those sensory, you know, strategies that really help the child. So
I always start like it really, again, I would say, you know, it depends, but I really, of course,
sure, see if I feel as though a child is very, very anxious, I'm not going to jump right into
reflex integration with them because it can bring up some sensations in the body, you know,
you can make maybe tightness in their chest or, you know, they might not be ready to kind of
sit with that and sort of like deal with it. So we'll look at, I do a sensory profile, which looks
at different sensory systems and how that then can affect like their behavior or their environment,
their, you know, how they socialize. So I'll pull from that. And then I can kind of then make kind
of like a list of strategies that I can give to the parent or to the child. So for instance,
I talk about the swing a lot, but the swings, I'll usually like, it's kind of like a,
like a likerum material. So it kind of like squeezes them when they sit in it. So they go in the
swing, like fabric, and it gives them that sense of proprioception. And because it's the joint
muscles, it's squeezing. And then the vestibular, that linear movement, which is calming. So we'll
do some of that, like weighted equipment, potentially, anything to kind of like, I think,
regulate them and understand, okay, like I might not feel so great after, because a lot of these,
a lot of the kids too will tell me in so many different ways with reflex integration, you know,
oh, like this hurts or like, I don't like that, or this makes me feel, you know, and I think,
well, I know it's just an uncomfortable, an uncomfortable feeling when, you know, I'll,
again, like when I'm testing the spinal gulat reflex, you touch the child's back and you go down
their, down their back and they don't have control over how they're moving. It's reflective, it just
happens. So instead of you can do that and they don't move. Yeah. So, right. It shouldn't, they
shouldn't move towards the stimulus right after that 12 month mark. So, you know, I just, I just
evaluated a 12 year old. And she said to me, like, Oh my gosh, like that, I couldn't even control how
my body moves when you did that. And I was like, I know, you know, even a five year old that I had
yesterday, I was working on her palmar reflex. And she said to me, when you touch my hand here,
my fingers move and it hurts, I don't like it. So that's not right. Like that Palmer, it's not
supposed to happen. But they just like, it's such an out of control feeling for them. So I have to
kind of be able to say and explain it as best I can to them. You know, this is, this is your right,
like this is how it, you know, how it feels and it might feel a little uncomfortable, but it will
feel better. You know, this is why I'm here and we're working, you know, so I feel as though with
the anxiety and the depression, I would say 95% of the time those children, in addition to the
airway disorder have retained moral or fear paralysis reflexes too. Wow. So what about weighted
blankets for these kids to sleep with? Is that good? Or is that I don't know, does that, does that
help? Or is that something that's going to freak them out? Right. So listen, again, like some,
some kids like them a lot. Other kids will like get this thing off of me. I can't, I can't tolerate
it. So I mean, listen, I sleep with a weighted blanket every single night. So what is my husband?
We have like two of them on the bed, you know, so you're not supposed to technically sleep with
sleep with them on you, but with children because what can happen is their, their body can get
like immune to it and it won't have the same effect. And it should be supervised as well. But
so it's more like, Hey, take a nap or Hey, watch a little TV without a read a book and then take
it away. Yeah. Okay. So and they can kind of sometimes the weighted blankets too. I feel like,
well, some, sometimes these kids like to have like a weighted stuffed animal or like a lap pad,
a little bit, a little bit more, I think it's a little more preferred sometimes, but the weighted
blanket, like a heavier blanket that you have in your house, like a throw blanket,
you know, sometimes that will like do the trick as well. But yeah, I mean, the weighted equipment
when, and again, like, so with weighted equipment too, there's like that tactile
systems or a sense of touch. So some kids, I know, like if they can't tolerate wearing a backpack,
which this time is coming up very, very quickly with the fall, I'm going to have to start working
on pressing wearing backpacks with my little ones. If they don't like how that feels on their body,
usually they won't tolerate any type of weight on them. We'll just have to find other ways. So
different, you know, heavy work activities for them, for them to do, you know, some of the older
kids, like I work with a 12 year old and he'll like, he'll take a theraband and he'll like pull
on the theraband now or like lift like, you know, three pound weights or something with his dad
downstairs, you know, so there's other ways to give them that input if they, if they just can't
tolerate the weighted blanket. But usually that is a more calming strategy. And you, and you mentioned
kids that can't handle, you know, the feeling of a backpack and, you know, we are coming into that
time of year. What about, you know, if you're a parent of that kind of child, you know, what do
you do? Can you do the, are the rollies the way to go until they're used to it or can you ease
them and do it? What's the, what's their right option? Yeah. So I think with OT2, you know,
one of the, one of my favorite, I guess attributes is that we can, yeah, we adapt kind of the
environment or you can use some type of, you know, adaptive equipment. So something like,
yeah, something that does roll, you know, it might look a little bit different. So then they can
just sort of like carry in their hand, like, you know, if we can come up with something like that.
Usually that, that hypersensitive tactile system, in addition to not wanting something on their back,
has a lot to do with those spinal reflexes. So look at those. But yeah, so we can kind of,
I like to say, like, you know, usually we do get there, like we'll start practicing, you know,
next month, I'll just have the parent like bring, you know, bring the backpack. And sometimes if it
is weighted, which it shouldn't be that heavy, but if there is a little bit more, like maybe a couple
of books in there or something, not too heavy, but sometimes kids are more willing to try it. It's
a little bit heavier because it gives them that regulating feeling. Okay. Oh, that's interesting.
So how do I, as a parent, how, how do I know that maybe my child needs occupational therapy?
Yeah. So really, it's if, if they're, you know, if the child's daily life is impacted, and if your
life is impacted too. So, you know, if they're picky eaters, you know, you can't sit down and have
a meal, you know, and I mean, not have a night bar, like if they are looking at food and it makes
them want to gag and they can't smell of the food when you're cooking on the stove. You know, if
they're not meeting those like developmental, you know, I don't love the word milestones, but like
those developmental ranges, you know, if they are going from, you know, they're sitting on the floor
and then they're eight months old and they're standing, it's like we want them to be able to
roll and reach and crawl, you know, the, the it's so important because when we just go to,
you know, maybe just sitting on the floor to then standing, they're locking their joints out and
they're not, they don't have to use that fluid movement or the muscle to stand. It's like, oh,
again, I'm compensating. I've learned how to do this and now I'm just going to start walking. We,
we want kids to crawl. You know, so if, and yeah, they're, if they're sort of, I always say like
anything with like sleep, if they're struggling with potty training, difficult to walk, you know,
difficulty tolerating sensory input. So again, you know, some kids, they just don't love having
their hair washed or, you know, it's, it's bath time is supposed to take, you know, 25 minutes and
it's taking you two hours, you know, start to finish. So any of those occupations that are really,
you know, really impacted, you know, I would also just say if they're toe walking or the open
mouth posture or sitting in that W, they have like some of that low tone emotional dysregulation.
So a lot of the kids with their retained reflexes too, you'll see, I mean, I feel like the majority
of the referrals that I get are for the social emotional piece. So kids that just, you know,
have a lot of trouble interacting with, with their friends or, you know, they lose a game and it's
like they need to throw, throw the game across the room and they run out, you know, and they're
upset with lingers for, you know, an hour or two. You know, so anything like that. But I always say,
if their daily lives are impacted and yours are too, it's definitely time to reach out to an OT.
And when they're, I mean, I know obviously, one of the things we advocate for is this, you know,
holistic ecosystem of providers and let's look at the child as a whole and let's all work together.
You know, Dennis talked to pediatricians, talked to occupational therapists, lactations, let's all
work together. So if your provider doesn't have somebody they can recommend for you and, you know,
you have to go off and Google or have her, when you start the process of looking for an occupational
therapist, what are some things that parents can ask so we can make sure, you know, this is the right
fit for our child? Yeah. So I think honestly, like even if you do, you know, if you do, if you are
doing your own research and you are kind of like Googling and you find a couple, maybe two or three
occupational therapists that you're interested in, I think, you know, whatever your concerns are,
there's nothing wrong with kind of calling and asking for a consult and, you know, a phone consult
and just saying like, these are my concerns, what can you do to help with this? You know, I hate to,
I hate to go back to this, I feel like social media can be a wonderful, wonderful thing and at
times it's not so great, but I feel as though through my social media too, like I'm getting more
referrals that way because people are finding me and reaching out and I always will do a phone
consult, but I feel as though, you know, even reaching out to, you know, people have messaged me from
all across the country, I mean, even outside of the country asking this question,
especially when it comes to routine reflexes in the sensory piece, and I will like, I will try to
find them somebody if they're in Texas or California or wherever they are, I'll send them to, you
know, certain directories to look for OTs that can help them with what they want, you know,
I post a lot about routine reflexes and sensory on my Instagram and that's really, you know,
I'm able to do that and that's partially why I started my own business because I felt like I was
very restricted prior to. So, you know, you can always reach us, I mean, I always get back to
people, I don't know, however, anyone else's I get it, like it could be overwhelming at times, but
I think too, like it doesn't hurt just to reach out to reach out to people, you know, other
professionals on social media and even, you know, asking, you know, sometimes, you know, again, like
if someone's open to talking about it, asking around, you know, I feel like by word of mouth,
you really get better, you know, a true recommendation and someone that had an experience, maybe so
maybe a friend of a friend had, you know, their daughter needed OT and it was the best experience
and she was a great OT and, you know, so I think just kind of asking, unfortunately,
too, with, you know, a lot of pediatricians and not all, but some, it's kind of like this
wait and see approach where like it were me, you know, we would intervene right away, whereas
so parents also have to advocate for that sometimes, like it sometimes. Absolutely. You know,
I think, you know, I'm hoping that this can change, but as far as development, unless you're
seeing a developmental pediatrician, they don't really know a whole bunch about development or,
you know, airway or, you know, anything like that. So yeah, it's very important to follow,
you know, your intuition. If you feel like something is wrong, don't let it go. There's
always outpatient services too. And I always say, you know, like even if you get into an
outpatient or you start with birth through, you start with an OT and it's not going well, you can
always, you know, ask to change providers usually with births to three or outpatient. There's other
therapists and if you sign a good connection, you know, don't be afraid to ask to change,
change providers either. That makes sense. So at the end of every episode, I always like to
hand the floor back to our guests because you know, y'all are the experts, you know, best. So
is there anything else you'd like to add or a last thought to leave with parents or maybe something
we didn't cover that you'd like to share? Yeah, I think, you know, especially with,
I think kind of going off of what I was just saying about following your intuition,
a lot of families that call me, I'm kind of like their last home call, like a lot of them feel,
I think a little bit defeated because they've known for a long time, like something that
is going on and we're not, we can't quite put our finger on it. So I feel as though
something that's very important is to follow, definitely follow your intuition, but then
you have to start really advocating for what you think is right for your child because I have sent
so many kids to an ENT that doesn't have experience with Airway, you know, unbeknownst to me and they've
come back and I'm like, nope, they're fine. And it's like, well, they have circles under their
eyes and they have an open mouth posture and they're storing and they're grinding their teeth at night
and they're waking up and well then, you know, well what is, so I think just unfortunately the
world that we live in, you know, just doing your own research and really trying to figure,
figure it out on your own and then taking that with you to a medical professional or healthcare
professional, you know, I think that when something seems like it's a little bit off, even if it is
just a little bit off, early intervention is, it's priceless, you can never go back, you know, so
that's why especially with birth to three, getting families started, even if they're just on the cusp
of qualifying, I always say just take it, like take it and run, you know, the same thing with
without patient OT, I think that like the earlier that we can get in there and kind of start helping
even with airway, you know, the better the outcome will be. So I always just feel as though if a
parent or caregiver thinks that maybe something might be off, usually they're right. And to kind
of sometimes also just getting a second opinion, you know, if you still feel like, oh, I don't know
I don't know this, you know, I went to the specialist and I'm not really sure definitely getting a
second opinion can, you know, maybe confirm what you were, what you were thinking might be going on.
Right, because you know your child best. Yeah, absolutely.
Thank you so much for being on today and for, you know, sharing your information with us. Really,
really appreciate it. Of course, Rebecca, thanks for having me. Absolutely. Thanks again to today's
guests and Marie DeMarco for sharing her story and medical insight and each of you for listening
to today's episode. If you're new to our podcast, please don't forget to subscribe. And if you
enjoyed today's episode, leave us a review or comment telling us about what you enjoy most.
You can stay connected with the Children's Airway First Foundation by following us on Instagram,
Facebook, Twitter, LinkedIn, and YouTube. Parents can also join us via our Facebook support group,
the Airway Huddle, at facebook.com backslash groups. If you'd like to be a guest or have an idea for
an upcoming episode, shoot us a note via the contacts page on our website or send us an email
directly at info at children'sairwayfirst.org. And finally, thanks to all the parents and medical
professionals out there that are working to help make the lives of kids around the globe just a
little bit better. Take care, stay safe, and happy breathing, everyone.
Bye.