Nicolle Santamaria

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For over 6 years, I have been specializing in cranial remolding therapy in South Florida. I hold a Bachelor's in Science from The University of Florida and a Masters Degree in Occupational Therapy from Nova South Eastern University.

As a Certified and Registered Occupational Therapist With 10 years of experience with adult & pediatric population, my rehabilitative background focuses on early intervention to maximize outcomes and provide the best quality of care. My experience includes positional deformation head-shapes as well as post-operative orthotic treatment. I am passionate in providing patients and their families the outstanding resources and guidance throughout their therapy journey.

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S01E16 Nicolle Santamaria.mp3 - powered by Happy Scribe

Welcome to the Enabled Disabled podcast. I'm your host, Gustavo Serafini. I was born with a rare physical disability called PFG. My journey has been about self acceptance, persistence and adaptation. On the show, we'll explore how people experience disability. The stories we tell ourselves can both enable and disable our vulnerability is the foundation for strength and why people with disabilities can contribute more than we imagined. I hope that leaders, companies, clinicians, families and friends will better understand our capacity to contribute to the world and help enable us to improve it.

Nicolle Santamaría is an occupational therapist at the Atlantic Center for Reconstructive Surgery, where she specializes in cranial remolding therapy, occupational therapists serve an important role in adult and pediatric care. I wouldn't be where I am today without the wonderful occupational therapists I had as a child. And I feel it's invaluable to learn more about them, what they do and how they work with their patients. Nicole epitomizes how a great occupational therapist works. They see the whole person understand their goals and empathetically problem solved to better outcomes.

We're getting some terrific feedback on the show so far, and it's having an impact. We're super grateful to share this space with you and we want to keep growing the podcast together. So please share it with friends, colleagues and family members. It'll really help us grow. Oh, welcome to the show. Thank you for being here.

Thank you so much for having me. I'm super honored to be here with you.

Thank you. So let's let's get started. So for people who don't know about you, let's get into your background. So you are an occupational therapist or we'll dove into that more in a bit. But so when like at what point in time when you were in school, did you kind of know that you had an interest in occupational therapy?

So really was probably around the second year of my undergraduate studies, I went into college not exactly knowing what was it that I wanted to do. I was kind of open to finding new paths. So believe it or not, I started as a major in art history because I was going to live in Italy and be a curator of. But slowly, after taking a few classes, I realized maybe that's not the path for me. So I remember sitting in the floor of my dorm room, opening the course book, looking through, and I knew I wanted to be in the health field.

I had a strong sense in that direction, so I started looking at the different parts. So you had the track for pay, which is physician assistant. The track for rehab, the track for nursing and therapy really called to me. I remember being presented with my own family member who was going through therapy way before I was in college and family friends that were therapists. And I was like, oh, that's pretty interesting. So so I was able to apply to the the College of Allied Health because therapy is part of a health profession which includes nursing, dentistry, physical therapy.

And once you start that program, they introduce you to generic health studies. You're taking anatomy and physiology, kinesiology, biology, physics. And after that, pretty much that kind of sets you in the course. For once you start focusing on your career choice, then you're able to branch out into those direct programs. So pretty much wasn't until my third or fourth year that I really decided on occupational therapy. And then once I picked it, it's it's been the course for me since then.

So you could have gotten physical therapy, you could have gone those other routes, but you chose within the same program. You chose occupational therapy.

That's right. Yes. Yes.

For people who don't know or maybe like, the distinction is not as clear as it should be. What's the main or what are the big differences between what an occupational therapist does and a physical therapist?

That's a good question. I get that all the time. The name occupation, occupational therapy is it's confusing at first. Some people think you work in pediatric occupational therapy. Do you find jobs for kids? And also of finding your occupation or vocation is important. Occupational therapists really help people across the lifespan of participating meaningful. Wants and needs activities that just through the therapeutic use the self guide them through everyday activities. So an occupation for a child might be being able to participate in play or being able to write their name down, being able to sit in a classroom for adults.

It could be something different, such as being able to brush your teeth or standing up from a wheelchair, not using a wheelchair or things like that. So what distinguishes us from physical therapists? We really like to focus on the therapeutic use of self. So we really look at the person not only from a bio mechanical point of view, which is like looking at the muscle or looking at the bone or what exactly is wrong, but looking at the other aspects of that person's life to see how are they impacted, where are they limited and how do we facilitate them to get to that point?

We're not trying to fix necessarily someone. We're trying to help them get back to activities or find a new way to do something that's important to them.

So I know that I had a couple of occupational therapists at different stages of my life in childhood that were. Unbelievably important to help me. It was physical therapy, too, but, um. OK, so how do how do I take issue with one arm, right leg. So I never learn how to do that, but we found workarounds or how do we. Gustavo interschool into like normal schools, like because back it back in the early 80s, the occupational therapist was very adamant with my mom about like, don't send him, like, do whatever you can to send him to a quote unquote, normal school.

He's going to get better education, more opportunities, et cetera. And she really helped me. And not only she got me into. The first school I went to kindergarten and first grade a Montessori school, but she helped me prepare for school and it was just it was an invaluable experience. But that's only one element of that's only one kind of subfield of what an occupational therapist could do, correct?

Absolutely. There is occupational therapists that work in school settings. So they may be helping a child in the classroom. They may be bringing in assistive technology to allow the child to continue sitting in the same classroom with their peers, not having to leave or be able to just keep the same environment that they may be used to or what your therapist thought was a viable goal for you and your mom to continue or to to be around your peers and not be isolated, because that's a big problem, especially with people who have limitations or disability.

Isolation is a big thing that children often feel that they can't participate in the world around them just because the world itself is set up with so many barriers. And so to help facilitate that transition so that someone can still be in the same classroom as you and you may need a little extra help sometimes in the form of a bouncing ball or a toy, or you may see a technological tool, you may see an iPad or something that helps them be able to participate.

And that's super important.

And so when you were when you were in school, as in, like studying to be an occupational therapist, did you get to work in certain clinical settings or was it mostly just academic work and then they kind of throw you out into the world?

So basically, when I started at school, it's a master's program at the time. So you do work on getting your bachelor's degree. And this is for occupational therapists because there's an occupational therapy assistant who also go through school. But once you start the master's program, as far as in my school, because every university is different, every program is different. When I started, there was a change in the curriculum. So it wasn't always a master's program, but it had become so in the recent years.

And the way they set up the curriculum was different. So it did involve at first a lot of classroom work trying to establish within US future therapies. What was the framework's, what was the skeletons of occupational therapy, the history, the theory, your basic sciences. So we were we were taking anatomy and physiology along with the TS and the dentals and the odds, all those other students, we were also taking kinesiology. But once the program starts to bring you to completion, then you're able to do what they call rotation's or internship's, where they split the class into different locations.

So when you're out, you may be in a pediatric setting. So you may be in a school, in a clinic that's independent from a hospital, or you can be in a hospital setting and then you do an adult rotation. So then the whole classrooms with adults. So again, that could be in a nursing home and a hospital. At first. It's really the luck of the draw. You can you can voice what you really were. You're interested in going, but you kind of just get all right, this place is available to take you.

They're not bombarded with other students. So this is where you're going to go. But I will tell you, one of the most interesting rotations I had wasn't in a clinic. It was in the community. So it was in an art studio that caters to the community that has any mental health issues. So that was interesting because. You think therapy and you're like, OK, I can see how that would be beneficial, of course, we're going to be everywhere but the.

Art studio worked in doing a lot of therapy with art and doing group therapy, and occupational therapists actually come from that, like our history when we first came about actually started with mental health. So it was interesting to be in an art studio, not in a clinical setting. They have these tools available to you and turn them into a therapeutic use. So that was that was really interesting and it was memorable for sure.

That's that's really interesting. So I spoke to. A really interesting lady a week ago, hardly, she is on the show and she uses art as a way to it's it's rehab and therapy for her. So it's a way for her. She's. Is partially paralyzed from a diving accident, and she uses art that started out as a way for her to exercise her arms, and then it turned into something therapeutic and something that she actually loves. And she's she's painting constantly now, which is which is interesting that you had that experience.

Absolutely artist therapy, do they? Is that pretty common or is that pretty hard to find? You think, ah, there are a lot of artists, there's probably not a lot of art studios doing that, right?

Right, right. And that was an art studio that was funded within the community and was part of a program that was receiving grants. And they would help the people who are coming to the studio. They would pick them up from if they were in group homes or in a special facility, they would bring them. And so there was people who were independently living in the community and then there's people who were in homes or might not be like a home for homeless people, but a home maybe because they weren't able to take care of themselves in assisted assisted living facility.

Yeah, and mostly for mental health issues. So if someone's issues were really severe enough that they weren't able to live by themselves, they didn't have anyone to care for them, they would live somewhere. And then the place provided transportation to and fro. So it was pretty interesting to talk to the people, hear their stories. A lot of them said that when they were. Starting off, they didn't even know how to hold a paintbrush or how to make pastel colors or anything like that, but a lot of them found that the art in itself was.

More meaningful and even they felt that worked better than their medication, a lot of them said it was a woman who told me that once she was drawing, she wasn't listening to the voices because she was she had auditory hallucinations, that she was hearing things that was just part of her every day. And she said when she was doing that, she wasn't hearing. So it was a way for her to cope and then also for her own therapy. So absolutely.

That's amazing. That's really amazing. And then. When you got out of school, what was your first, what was your first? Well, before we get into your first job. Looking back at school now, I'm curious, like, what do you think they could be doing better teaching wise? Like what are the things that you wish you knew in school that they didn't that you didn't get?

It's a good question. So the schools I can only talk from my experience. Like I said, every program is different, but schools will teach you everything by the book. And when you take your board examinations, you have to go by the book. But real life isn't by the book. So a lot of things that you see in the day to day clinic I feel would be beneficial. So. Especially in pediatrics, a lot of the times you're not really talking with the child, but their families or extended family.

So I think a lot more education regarding how to be an effective therapist with the family is beneficial, dealing with just the red tape insurances. That's one of the biggest challenges as a therapist is being able to provide the services. Effectively, when you're being charged with your payments and minutes and things like that, so that's really challenging in itself because in school they're like, you can do so much, you can do all this and do this, but then you go to the real world is like, that's not paid for.

You can't do that. We don't have the funds for that. So I'm just trying to work with that and then just helping with job transition, looking for a career. I think my program didn't really have that. We graduated and then we were all left on our own to find a job, apply and figure out that maybe when you are fresh out of school, you shouldn't be doing certain jobs, even though they're the ones that are most available.

Things like home health, home health is great. You work on your own, you get to go to different homes. You get to do one on one therapy, but you don't have a lot of support. So I mean, therapists, that maybe has a lot of information. What's going on up to date? It doesn't have the hands on skills yet. Can be left pretty much alone if they're not, is there not a team there to fall back on?

So just little things like that probably would be more beneficial.

So so, OK, that's interesting, so the people that work in home health, out of school essentially are like freelancers, basically, like they just this their own is their own kind of business and they're just going out and. As they find, how do they find?

I understand, yeah. Yes and no. So who else is? Usually provided by a company that contracts therapists, some of those therapies are full time, some of them are part time. They pretty much will work with the social workers, the local insurance companies, the hospitals. So when you're leaving the hospital and let's say you need additional help in the home, maybe you need a little bit more therapy as you're leaving the hospital, the hospital set up either with your insurance company or social worker caseworker, they will set up a plan for the person once they get home.

So usually an agency will contact the family or contact the person and they will send someone physical therapists, nurse and occupational therapists to evaluate and see what the what the patient needs. What you're in your house now. You're in your you know, the place where you need to thrive the most. How can we help you? So the. The jobs in home health are are in demand while these pre prevent they work, and it's very attractive because you tend to be able to work certain hours.

So you may be doing weekends, evenings, you can be flexible in your time. Sometimes it's paid by vacation. So it really it's attractive for for anyone to to consider that. But when you're fresh out of school, you would definitely need a group of people to be there, a mentor, or to be in a place where you're able to look at someone and say, hey, let's talk about so-and-so. What can we do to help this person thrive?

And so not everyone in home health is a fresh is a fresh therapist, but it is it is one of the jobs readily available that that you look at if you're searching for a job. So it's just something to consider.

I think it would be interesting, maybe as a side project down the road, I was speaking to a really interesting lady named Kelsey. She works at a Center for Independent Living, which I was very familiar with those.

Yes, yes. Yes.

So I wasn't. But it's it's really it's really interesting now that I am I think that would potentially be a great way for if the schools could establish relationships with the local Centers for Independent Living, that could be another another way to branch out and actually help people get some. Some important. Internships and also some experience working with people with disabilities who need that, like they're trying to live independently and and figuring out how to help them do that.

Absolutely. And there are programs out there that try to get students to see these places. A lot of these independent living and assisted living places have a very, very fancy, attractive structure to it, where they sometimes go far beyond to help these these people just live their life to the fullest. I mean, you're talking about you have sensors in the home to be able to detect if a person has walked on a certain surface to alert the center and then check on Mr.

So and so they haven't gone it up. So definitely there are some programs out there that are already sending students out to just to kind of see how these places are right now.

And then what was so what was your first job out of school?

My first job was in a skilled nursing facility, so a little a little different than an independent living facility. So independent living facilities are. Usually homes, small apartments that don't look any different than the standard ones, except they're equipped to make it easy for anyone to live in. So the showers, there's no bathtubs. There's typically showers. So you don't have to step over a threshold. There's safety bars, everything's open and accessible. So you don't have to navigate through difficult pathways, usually very illuminated.

And depending on the location, the meals are taken care of, medication is taken care of. So the person really doesn't have to cook. So there's no risk for fire burning or injury like that. And there is people looking after the residents there. So if you need to go to the grocery store, if you need to go somewhere, they do that, they help you with that. But you're able to live by yourself. You have to have someone with you.

Twenty four hours. So that's that's good. So a skilled nursing facility is different in the fact that it is a rehab facility. That's where the skilled nursing comes into place. So usually people that are skilled nursing facility need some type of nursing care or rehab. Nursing could be as little as you're on a special medication. No one give it to you at home or you need to be an IV. So maybe you need to stay in this place for a week or so while you go through the medication.

Or it can be something as you can't get up. You had a recent surgery, so we need to take you here so that we can help care for you. And then while you're here, you're going to receive services to get you stronger and get you back. So physical therapy, OTTI, occupational therapy or speech are usually offered at these places. Some skilled nursing facilities are short term, which means you're only there for a short amount of time.

It could be anything as a few days to a few months, depending on what your needs are. And some of them offer both. So some of them offer long term, which means maybe you need to be there for longer than five months or six months, or maybe you need to be here indefinitely, which then is considered similar to a nursing home where you need some nursing care.

And so can you talk a little bit? Let's get into a little bit of specifics and then we'll move into your current role, which is a really interesting transition. But so when you are at the skilled nursing center and you can you tell us, was there one particular person or maybe like something that you felt really good about, that you did, that you do improve somebody's life in a way that that wow, that was impactful. I really I made a difference there.

Can you give us a story, an example of what that would look like?

So the skilled nursing facility I worked at was a little bit different than most in that it had an Alzheimer's unit in it. So the staff there was trained to work with individuals who had dementia and Alzheimer's. So our skilled nursing location could be locked if it needed to be so someone wasn't able to to to leave. But to answer your question, there was there was a few people actually, I think it was extra special because it's challenging enough to work with an individual who is used to doing everything on their own and now they rely on someone.

And it's really difficult, I mean, for anyone to lose your independence, to have to depend on someone. So. Generally speaking, adults are a little bit more apprehensive about doing therapy, but they know they need it, so. Working with Alzheimer's patients is extra tricky because depending on the level of advancement of their dementia or their Alzheimer's, they can forget right, right then and there what you just taught them. So it can be challenging. But a couple of the people that that I recall were just lovely people who who are not aware of where they were.

A lot of them thought they were at a hotel. But it was I had one patient in particular. She thought I was her niece. And so so she was she was always happy to see me. And it was just beneficial to work with her because we needed her to be able to walk if we needed to be able to to be able to get up from her wheelchair and and then sit back down so that she can so she can just be able to go out with her family.

She wasn't going to go home. She was going to stay there. But one of the big things was for her to be able to do that. So I collaborated with the physical therapist with her and physical therapist was working on trying to get her to stand up and sit down. And then I worked with her on developing ways for her to remember to do it safely. So it was it was interesting because it was a joint it was joint therapy.

We're tagging on this on this particular patient so that she could remember. And there were times she forgot. But for the most part, she was able to remember is not being able to say it. She was able to do it. So we wanted her to be able to keep her hands on her walker and stay close to the walker. So she was able to do that. And that was really that was really great.

That's awesome.

Yeah.

So the good story. And then now we're also where you're working now, so I work is a completely different thing. So I went from working with adults to working in pediatrics and working with children. So for the past six and a half years, I have been working as a cranial remolding specialist slash occupational therapist. So like we talked about before, Guz, occupational therapy is just you can do so much. You have therapists in the classroom. You have therapists in all locations.

Therapists can work with you to get you strong, but they can also work in the field of orthotics, which is bracing splinting, things like that. So I became specialized in working with cranial remolding orthotics, which is a fancy word for a helmet. And we we work with children, usually infants. So from birth to a little bit under two months, sorry, two years of age. And my day to day is pretty much either doing some therapy with these children to work on strengthening, to work on milestones or to make their helmets for what is so cranial.

So what? So why do they need. Why are these helmets beneficial? Why are they coming into to the clinic in the first place?

So a lot of these children are coming in because either the parent is noticing that there is something different about the shape of the baby's head or maybe the pediatrician or someone else has noticed it. So typically when that happens, then you're as a parent, you're directed to go to a specialist who will then see what is causing the difference in your baby's head. So at this point, that's where I come into play. Where I work is is craniofacial facility.

So they see all sorts of patients that have cleft palate issues that have cranial facial deformities or abnormalities and even down to the to the hands, to the fingers, they'll see people who have extra digits, extra toes, things like that. So the specialists that I work with will typically try and see what's causing the difference in the baby's head. Is it positional difference? So is the child having this because they're favoring maybe laying on one side over the other?

Is it something that happened after birth? Is it something that happened prior to birth or is it something internal? So the specialist job is to try and figure that out. And how we do that is we take the history of the parent. We look and look at the child. We do sometimes we do imaging. So imaging can be like X-rays or CT scans. And what those images are looking for us to see is the infant's skull shaped in a certain way that is causing the problem.

Maybe the bones closed early. If you're familiar with infants, there has a really soft touch, a baby's head and squishy. You can kind of feel pretty much everything. So a baby skull is soft. It's it's supposed to be like that so that when they go through the birth canal, then it's a little bit easier on the child to come out. So if there is a problem such as a bone fusion or something going on internally, then that's when the when the specialist is able to make an intervention.

So will this child need surgery to open up those bones and allow the head to grow freely? Or is it something else? Is it fluid or something? So if those things are not, what's causing the difference in the baby's head, that's where I come in. So as a as an occupational therapist, I can help teach the parents about repositioning. So a lot of times if the child is favoring one side over the other, it could be because there's some weakness in the muscles.

It can be a habit or it could be just the parents need some support. They need to be educated or they need to be taught. You can turn your baby on their side when they're awake. So the. The big push is changing the baby's position when they're awake so that they're not laying on one side over the other, so that the head is free to grow. It sounds very simple. It sounds like common sense, but you have to take into consideration that a new parent has no sleep.

They're they're usually really, really information overload. They're learning how to take care of one of the little human who is very vocal about their wants and needs. And it really it's been a real big push for parents by the American Association of Pediatrics to. Lay the babies down on their backs to sleep. That's been a real big thing since the 90s. It's been a life changing, life changing program. It's reduce the risk of SIDS significantly. All the hospitals, all the nurses, all the pediatricians will tell the parents when your child is going to sleep, placed them on their back.

And absolutely every parent should do that. You don't want a child on their tummy or on their side if they're not old enough to roll out of that position. Infants don't really move too much at first. They just kind of stay. So you really want to avoid them suffocating or being in a position that could cause them harm. So what we tend to see is these babies are laying on their backs for a long time. Even when they're awake, the parents aren't moving them as much.

So then they tend to have a little bit of favoritism. Or maybe the school is is not shaping the way it needs to other other time. And so the helmet to helmet is essentially designed to fit comfortably enough on the baby to allow the the the head to develop more more correctly or more normally. I know that's a sensitive word, but this is essentially what's being done.

Right, so that the helmets are custom made. They are made to the design of the baby's head. So we use measurements. We have tools that we take measurements. Basically, you're seeing how big the head is, how wide, how long. And then we use a tool that's a 3-D laser scanner. It's noninvasive. It's not like an X-ray or C.T. It takes a picture using cameras and a laser. And it uploads this image into a software that gives us a bunch of measurements and data about the baby's skull.

So it doesn't go in the head just because it's an outside shape. And so this program allows us to establish a baseline. We have research. We have empirical data that lets us know where a human skull should be, not for ascetic reasons, but for functional, just to be able to for your brain to develop. So the skull grows because the brain grows and the brain and an infant is constantly growing. It's pushing up against the skull bones.

Those bones are not fuzed yet. They're nice and free and open. So the skull is free to advance. So what happens in a baby that has a misshapen head is that the skull is only growing one way. It's not growing fully the other way. So when you think about the skull not growing that way, you also have to consider is the brain also not growing out that way? And so. In very minor cases, it is considered a little bit of cosmetic, but.

Essentially moderate and severe, misshapen forms, you want to intervene to prevent it to get worse. There's still research going on on the children who perhaps had some differences in their skull shape and how it's affecting them in their development in school age and because it's relatively new in the last 10 to 15 years. The research is still coming in, but there can be some delays. Not everyone is. But it's it's the helmet therapy is a form of early intervention.

So you're really stopping the cycle from going in the wrong direction and allow it to to grow where it probably would have anyway if the mattress wasn't there, if they weren't favoring that side. So.

And so how often do these helmets need to be redone? Like, does it I know it's probably a case by case, but typically, is this something that the baby wears for six months, three years?

What's the what's the protocol? So infants, they grow rapidly in the first year of age. Their heads are growing rapidly. Babies tend to have big heads and small bodies. So depending on the type of helmet that you use or the company you go with or where you go, the helmets are typically designed to either be adjusted or to be changed. The helmets that I particularly work with are the Starbound helmets and they actually adjust them. So the child pretty much only needs the one helmet that was custom made for them.

And then as they start to grow, you start to gently drop the head towards where you want it to grow. So it's like a detour. Don't go this way. Go this way. And by removing layers of the helmet. Yeah.

How long does it take the babies to get acclimated to the helmets or is it just pretty because it's custom made and custom fitted? I'm sure parents are asking you like, you know, is this painful? Is this going to be possible? So for people that maybe have been through that or who might go through that in the future, what's what's the answer there?

It really it depends on the child. It is. And it is not painful. It's not applying pressure to the head. It's not causing headaches or anything like that. You don't want to put a helmet on a child and put pressure on it because then that's not good. You have a brain that's expanding, so you don't want to do that. So the helmets, because they're custom made, they're made to fit the head better than the diaper that you would buy off the shelves or the pants that you buy at the store.

So the most uncomfortable part of it is that you do have something on your head and normally our heads are where our body evaporates or heat. And you normally don't feel that until you put something on there. There has nowhere to go but down. So that's probably the most uncomfortable part that the babies may feel warm or they start to sweat with sweating flashes. So most babies get used to it within, I would say a few a few days to about a week or so.

Babies are super resilient. As long as you keep them comfortable, dress them lightly. Cool clothing, breathable. You clean the helmet often. You make sure they're not there in their sweat, then they typically acclimate pretty quickly. Sometimes you may get the sleepless night. Parent was like, Oh, my child's not falling asleep. They're not comfortable. And the older the child is, the more challenging it is for sure. If you put something on a three month old or four month old, they typically won't fight you to get it off.

But if you remember with your nieces and nephews, if you put something on them, boom comes off. So but the treatment varies. Each child is different. We do work on establishing a plan of care that is as is custom made. So, you know, depending on the severity of the child and how old they are is really what's going to dictate how long. If it if a child is in a helmet and they didn't have any surgery, there was nothing internal that was going on.

They'll they'll average about three to three to four, three to five months in the helmet.

Is it something that again, it's customizable? I'm assuming it's per her case, but do they typically wear the helmet, you know, twenty, twenty four hours a day, five hours a day or. It varies, I'm assuming.

No, actually, it's a pretty standard. Twenty three hours is what's recommended. There's been some research on it and the conclusion is twenty three hours is the best. A child grows not only during sleep. We know children grow periodically throughout the day. So the helmet has to be on at least twenty three hours so that you capture that growth. If you're not wearing helmet, then the child's going to grow out of it. Just like if you don't wear shoes, you're going to put it on sometimes and it's going to fit tightly.

So really needs to be on. Twenty three hours of most. Most clinicians that work in the field that I work will provide a schedule to the parent that will help acclimate the child so that it's not a big shock for them. So you'll you'll you'll allow them to get lean into it and it'll be checked periodically similar to braces. You have to go frequently to get them checked, to get them adjusted. So there is a lot of thought and care put into the process of how to get the babies used to it, how to get the families used to it, and really being for them throughout the whole journey until they're done.

I'd imagine that the biggest challenge. Here is to get the parents to follow the regimen and get comfortable with it, right, because it's not like the baby, it's not like the baby is going to speak up and say, like, nope, I don't want this. So it's really this is really the success is measured by how well the parents. Understand and acclimate to and follow the program.

Definitely, definitely. That is one of the biggest challenges that I face on my day to day is compliance, keeping the helmet on. And I would say a lot of a lot of families are pretty compliant. They're eager to get it done. They understand what happens if they don't. And in a way, when they are coming to see me, I a lot of them feel accountable for being. Being compliant, they get asked, are you wearing it and they can say yes or no, but then we take measurements, we do scans.

I can tell if someone's not wearing it or not. So a lot of them will pretty much fess up before they can get to that point. So definitely compliance is a big thing and it could be a number of reasons. Sometimes parents want to have the helmet on the child, but maybe the child may get sick, often unrelated to the helmet. And so they're not able to wear it or maybe the child's very sensitive in their skin. So they start to have a lot of skin issues.

And that could be another reason why they may not wear it. So there are cases where it's kind of out of the hands of the parent and they become a little bit frustrated because they want to wear it. And then and then obviously you have the situations where it just it's difficult. Everybody's everybody's life journey is different. And and there may be other factors other than. Not wanting to put it on to the other family support or lack of that comes into play could be home situation, things like that.

So you really have to take that into consideration and try your best to work with everyone, meet them at the level and and just remind everyone that we're on your side. I want what you want. I'm not here to to judge you or as a parent or as a caregiver. I'm here to support you. And and as long as you're able to to meet me halfway, we can we can we can get through this together, so.

That's awesome, that's a great attitude. That's. We have I have found that to be very helpful to you, and my work is reminding whenever whenever there's a problem or a conflict or a challenge, it's great to remind people that you're actually on their side, that you're not. This isn't this isn't a confrontation. This is there is a problem. We're going to work through it together and we're going to figure it out for sure.

Definitely. And and. These are a lot of these families come and they're very scared, they don't understand what's going on, they don't know how they got there. They have a new baby who now someone saying you need to put something on their head. They're not sleeping. And or, you know, it could be their third or fourth baby. It doesn't matter. Every every, you know, it's a lot for them and it's natural for some of us to be defensive and to just not just think everyone's against you.

So like like what you were saying, gussets, you have to remind people I'm on your side what you want more than I imagine, too. Like, this would be a great. Second episode that we can explore doing, but I would imagine that as a parent and I haven't really spoken to my mom or dad about this either, but I would imagine that whenever there is something that is not within the quote unquote normal sphere, that there is some conscious or unconscious blame, like I did something.

My child is having this issue because of something that I did wrong. Um, so there are some complicated factors there that you have to navigate through.

Absolutely. And it's something I hear all the time. You. You also as not only as a as the therapist, you're there for the child in my case, but you're also there for the parent reminding the parent it's not their fault. It really isn't. Even even if if if they think it is, it is. It's a hard mindset to get out of. So but I feel more so that with the pandemic, it's shifted things to parents feel isolated.

A lot of them feel isolated. They are not able to take their children out and they're not able to meet other parents. So they're really relying on the Internet and social media to kind of connect. And sometimes I'm the only other adult they see every two to three weeks. So it really I hear a lot that that blame like inflicting on themselves or and it's it's it's it's tough. It really is. But you have to remind them that. We'll get through it, so it's it's something that the.

More often than not, most most parents will. Regret not doing the program in entirety, then doing it. Many parents would be like I. Maybe I wish I would have kept it longer, but nobody's telling me I, I regret doing this or it was a waste of time. I don't care that at all.

So what are some of the the more effective strategies that you found to help the parents get over that, the blame game that they play? Is it support groups with other parents? Is it something that I'm sure they didn't train you how to do this in school? Right.

How do you know they did? Well, the resources. So a lot of times I would bring up that there are groups online and some of them already find them on their own where other parents are going through similar things. So, again, the Internet has really helped in that. There is also the fact that you kind of just talk through it. I'm present in these families lives for a few months, seeing them every two to three weeks. Sometimes I'm there for their babies first steps or batbold words or so you're going through this intimate moment in a parent's life.

So you have to have time to talk about things. And I'll read stories, stories as an ancient way of communicating. That's how our ancestors did it. That's how we're doing it. I will tell parents other success stories and even things that weren't successful like. A lot of them, especially when they're struggling with with the sleep and and maybe the child's having a little difficulty doing that. I will tell them, listen, I had a parent here two days ago who just told me that the baby is now sleeping with the help.

And they told me they tried this, this. Why don't we try this? Let's do that. Let's work on that. And and that's that seems to be pretty effective also. Taking a step back and looking at. The situation they were in, a lot of them retrospectively will find that maybe they were dismissed when they first brought up an issue, they had a gut feeling. They talked to their pediatrician about it or they talked to someone about it and someone dismissed them.

So we will take a look at that together and see. OK, so this was something you brought up. You did notice it and they told you it would get better or go away. They didn't listen to you. That's not your fault. So we'll talk about ways to advocate for their for their for their child and even for themselves. So that helps out a lot, too.

Is that where you see do you see? And again, we don't want we're not here to assign any blame, but just as an awareness thing. Right. Like. Is there still a lack of awareness because this is a specialized field among pediatricians where they're maybe not they don't have the training, they don't have the expertize to catch? These issues as early as they can be, so what is it like, what is your field doing to help? Is it about is it about awareness and education more than anything, or is there something else that's missing?

Absolutely. It is about awareness and education. That awareness, education and also time, so a lot of the pediatricians have a lot of patients coming in and out, their goal is to make sure the baby is healthy in any sort of manner, whether it be up to date with their vaccines or doing the things they should be doing, that they're gaining weight, things like that, and addressing any concerns. So. They're checking the child, they're doing the best they can, but sometimes things get missed or they think, well, it'll get better, but.

You're not going to see your pediatrician often enough that. If it's not getting better, it's not caught early, so usually with children, you have the visit initially when they're born, then you have one or two months old, then at four months old, then at six months old. So what I'm getting a lot from the parents is that between birth and six months old. It's either getting missed. Or. Teachers are saying it's going to get better on its own or.

By the time it's called, it's it's it's really far down in the game and it's not necessarily that. They're doing it on purpose, but again, they have a lot to to address in that time that you're in that room, and so it may not get to that point. So my my colleagues and I and I'm talking about even the people that I work with here and then other people around the world. What we try to push is for education.

So my colleagues and I are going to the pediatricians in our county and our I mean, we've got even like half the state to to introduce some this information, give them pamphlets about the importance of teaching the child, about checking the head, about working with these parents so that the parents are aware that, you know, if you see something, this is something that you can try and do to to help. And if not, let's let's let's take a look at it now.

A big challenge that comes from. Pediatricians not being aware of these or hospitals being aware of it is documentation, so by the time you. You realize or as a parent that your child needs a helmet, you're at the point where you're getting ready to see if this is going to be covered by insurance. Most most families would do that before they consider paying out of pocket. So insurance is may or may not cover the helmet. Depends on the plan, depends on the insurance.

So the ones that do rely real. A lot of documentation, if you didn't document it, then have it. So parents will often not be able to get a helmet for a child because maybe nobody ever wrote it down like it wasn't documented in the notes, even if they talked about it or maybe it was, but it wasn't document documented to a later visit so that I can be a real challenge, because then you have a child who needs this orthotic device to help them to get to to where they need to be.

But they have to either wait for it because it's not covered or if they don't get it. So. There is there is some research out there that does tell us that intervention, so when a when a parent or a caregiver is able to reposition the baby, when they're able to give them therapy if needed before the age of six months. The child can can the child's skull can get a little better on their own, so that's really important. That's so valuable if you're telling me that my child can avoid being a helmet, if I do, if I try X, Y, Z.

But if that information by getting to the parents, how are they able to implement that? So that's where we're coming in. We're going to these pediatricians. We're trying to get into the neck, use the neonatal intensive care units in the hospital. We're trying we're trying to talk to the colleges, the obstetricians, the reposition, move your baby, work with them, because you can to a certain point, sometimes you can prevent it before a certain age.

Once the baby starts moving on their own, it's really difficult to put them in any position that's going to help them. So.

And that's. It's inspiring to hear that, and it's also shows like how much you believe in what you're doing and the doctors that you work with, too, right? Because most most I mean, most professionals, I think don't give me that's going the extra mile. It's like I want to help. Let's prevent these issues regardless of whether they get the helmet. Let's put that put the information out there and help as much as we can. So that's really it's beautiful to see that, you know, you're doing that, your office is doing that and other other colleagues around the world are as well.

So that's that's really nice. And I will say that the health care system, like everybody knows it, has some some major issues that hopefully will get better and we'll leave it at that, whether it's more time with patients, you know. Better insurance coverages, et cetera.

Absolutely well said, definitely doctors I work with are great. There are doing speeches, presentations, research, and I mean, it's not beneath them to go and wait in a pediatrician's office with me waiting for these patients to have a little bit of their time so that we can talk to them about how important it is. We're out there. We're knocking on doors.

That's awesome. So last question for you, Nikki. What have I missed? That we haven't talked about, that you think is important.

They seem to have covered a lot good. Give me a second here.

OK, well, let me let me ask you, the will is give you a second to think about that. I just wanted to say I think it's important for the audience to understand something that is like we've been friends for quite a while. I work with Frank, who's your husband. We're all super close. But I did want to mention like so I had a question for you that I've never asked you before, which is so when you were in school, be elementary school, high school, college, or even in your work as an entity, did you ever like.

They're our friends or people you knew or people you saw or interacted with that had a disability, physical disability, it could be something non physical related. Have you ever had that experience?

So thinking back, I think that there was a few friends that may have had some physical disability as far as limitations that happened prior to birth, but nothing that was limiting them from being out and about with the rest of the peers for sure. No, no. I think more the disabilities, not in my friends or peers that I can think of more in older adults or family members growing up. Interesting because.

When I don't remember the exact day that we first met. Right, but I do remember I do remember at the very least like. Generally speaking, when we were hanging out as a group, that it was never it was never awkward, it was never like, you know, you can tell when people I can tell when people are uncomfortable with me, when they see me. And then obviously I'm going to work towards getting rid of that discomfort. But I never had that with you.

I never had that with Frank. I was just wondering, I guess it's something that's part of your personality and how you see people as opposed to how you were trained.

It could could very well be, I can't remember exactly either. The first I, I think if we were in a group setting and I to be honest, because Frank knew you before I did. So that's how you and I met. And I remember we met before him and I were married. So I think he had brought me over and the whole group of friends was getting together. And to be honest with you, I can't remember if he told me anything about you other than your name and what you were into prior to meeting with you.

But I know you and I have talked about. How we may or may have not talked about your limitations or gotten into into that history, and I I wasn't uncomfortable when I met you, I. Think that. And I don't know if this is right or wrong, but when I first meet someone, if I notice, of course, I did notice that there was there was some differences, but I don't. I don't address them because I wait for someone to talk to me about it.

I look at someone, whether they're a different skin color than me, different hair color, or they have something different strongly. I look at it and say, OK, you you've got that moving on, just as if you would have green hair versus red hair or I appreciate it, I see it. And then I move on to what is it that I want to do with you? Talk with you, get to know you chat. I don't let.

What I see. Carry me through our friendship or our interaction, I know with physical disabilities you're wearing, you're wearing it on yourself versus disabilities that we don't see learning mental that's hidden. You can't see that. So. It I can see how it can be challenging for some people to get past that, but for me, I just want to get to know you. I want to talk with you. And and it's not something that I'm trying to either dismiss because it's not important.

I acknowledge it. But at the same time, I don't think it makes you you you you're more to me than your limitations. You you're an interesting person. You're very smart. We've had lots of lots of great conversations. You're funny. And and I enjoy being with you. You've got a lot of charisma. And it's it's just always a pleasure to be just be around you. You've got that aura and it's a good vibe.

So but I mean, so but to me that sounds like that's something that's part of that way of looking at people is part of it's part of who you are for probably a number of you know, it was it was parents, it was friends. It was how you how you developed as a person, which is a great, beautiful thing because most people are not like you. But is that something that they also reinforced or taught or got into in an occupational therapy, in school or not?

Really into the occupational therapy is interesting because you really take into account the person. It's the person themselves. So you are trying to see the person as a whole and then divide them into parts. So, yes, your limitations and stability is one part. But then everything else, your role in life as a son, as uncle, as a friend comes into play. Your professional interests also come into play. You know, if I was doing an occupational therapy profile on you, we would look at all those aspects.

I wouldn't just look at you, you know, you got a broken finger. Let's fix it. Sure. But we're looking more more into into you. What makes you so. Absolutely. It could be that either I was called into it because that was attractive to me from the profession. But it definitely does the frame of reference that we use to to to take in an assessment of a patient. We're not just looking at why are they here, but every all the other components I know.

And in your interview with. With B.J. Miller talked about the the the medical model and how in his business, he he kind of drives away from that and so does Otti uses the medical model to a certain point. Obviously, if you come in and you have again, I'm going to go back to the broken finger and fix it, we'll do therapy. But there are things that as a therapist you're working on with a patient or a client or someone who's in front of you who is not.

We're not trying to fix something that's broken. We're looking at every other aspect of your life and trying to work with that and see how can we get back to doing the things you want to do or what's meaning for full use.

If you use a wheelchair in your environment, is the problem, then what's? It's not a medical model. It's a social it's a it's an environmental thing. If if your apartment is accessible, if the places that you want to go to in public are accessible, then it's not really a limitation in the way that we usually think of it. It's it's. It's as though you're looking at the whole picture. Environmental, social battle, everything, that's right, you hit it on the nail.

Absolutely. Environment and the environment can cause of disability. Your environment, whether it be the home school community, it can it can limit you. So, yeah, we definitely as therapists, we're looking we're looking to change that. We want to want to make it accessible to everyone and just so that everyone can thrive.

So where can people find Unical if what can you tell us about? You don't have to give your social media account out, but like so if somebody wants to consult with you, they're in South Florida or maybe they're traveling in your clinic is pretty well known. Where can they come in and and find you professionally?

Sure. Absolutely. So I work at Atlantic Center Surgery, so you can look us up on Facebook, Instagram. We have a website. I work with Dr. Eric St. Nick and Dr. George Kemel. We're located in Fort Lauderdale, but we also travel to other offices. I'm also on the Starbound website as an all star provider. Or you can look me up and find it through North America dot com, which will lead you to Starbound. Starbound is the type of helmet that I use so you can find me there and or I can always give you my professional email and you can look it on your site.

If anybody wants to send me any questions or anything like that, I'd be open to that for sure.

I will definitely do that. We'll put that on the website. Thank you so much for the time and the awesome conversation. This was. This was great.

Thank you so much. It was such a pleasure.

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