SUPPORTING FAMILIES AS WE LEARN TO EMPOWER OUR CHILDREN WITH DISABILITIES
Hosted by Erica Jolene and Kristyn Newbern, with special guest Jen Schuermann
Transcription HERE
Pediatric therapists become lifelines in the lives of parents and caregivers, teaching them how to empower their children with disabilities. If you are someone who has had the experience of interacting with an early childhood therapist, you likely already know just how special these people are. Today’s episode will remind you of the hard work these professionals have signed up for.
#PediatricPhysicalTherapy #EarlyChildhoodIntervention #PhysicalTherapy #RareDisease #Disability #Acceptance #NoonanSyndrome
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Episode Transcription
Kristyn
You do get frustrated at the crawl one?
Luke
Uh huh.
Kristyn
What does that feel like?
Luke
It feels like, my, my bones can't do it.
Kristyn
Like your bones can't do it?
Luke
Mmmh.
Jen
So what do we do when we feel frustrated?
Luke
We take a big breath!
Kristyn
Thats right. And what do we do at the play place, when can't do something the first time we try it? What's the best way to get better at something?
Luke
We practice!
Kristyn
That's right. Do you know what? I'm WAY WAY proud of you? You were super strong. And I love how you always try again, and try again. It's one of my favorite parts about you Lukey. I love you.
Luke
I love you.
Erica
Welcome to Season Two of Atypical Truth. I'm your host, Erica Jolene. And just about every episode, I start by quoting Walter Fisher, when I state that humans are storytelling beings. That's right. We all have a story to tell. And it is through those stories, where the power of connection, validation, and community are built. Which is why I created this podcast to amplify the stories of the people in my community, the community of rare diseases, disabilities in complex medical conditions. I know that I've personally benefited through learning from the stories of others in my community and I hope that you have as well.
Erica
In every episode, I also make a point to state that not only will you hear from my peers in this community, but you will also hear stories from family, friends, and professionals who advocate with us to share these stories, because I feel it's important to hear their perspective as well. As someone who has always lived with varying form of disabilities, I'm fascinated by the stories of those who choose to show up in our lives to support us and advocate with us. Those are some amazing stories as well. And you're about to hear one of those today.
Erica
My guest host this season is Kristyn Newbern, who is a fellow mother and caregiver of her son Luke, who was born with the primary diagnosis of congenital heart defects and it was later discovered that this ad stemmed from a variation of the rare genetic condition called Noonan Syndrome. In today's episode, Kristen is joined by her son's physical therapist, Jen Sherman. Now, personally speaking, I had no idea how important of a role our children's therapists would play in our lives. Once upon a time, they entered our home as strangers, and then they stayed in our lives as friends. I mean, truly, their therapists were some of my kids first friends in our home-life outside the hospital. They were there to cheer them on through every good day. They were also there to provide extra snuggles through the bad days too. As for us, well, they helped us to build confidence in ourselves and in our advocacy. And really, they set a foundation of what support should look like throughout the lifetime of our children.
Erica
Today, you will learn more about how Jen has become an amazing example of that support and confidence for the Newberns. You'll also hear about the events that inspired her at a very early age to become a physical therapist, the challenges she faces in her career and the joy that her career brings to her. If you are someone who has the experience of interacting with a therapist of this sort, you likely already know just how special these people are. But today's episode will remind you of the hard work that those professionals have signed up for.
Kristyn
I'm so happy that we were able to make time to have this conversation. Very excited that you are here on Atypical Truth.
Jen
Thank you for having me, this is gonna be really fun.
Kristyn
Yes, how fun to actually be able to sit down and have a conversation with each other. I do want to start us off with some really fun, rapid fire questions, and then we'll move right into our discussion. So first, would you rather have a live in Butler, or a living chef?
Jen
I think that one's pretty easy for me. I think I'd rather have a chef, because I don't love to cook. I like to have nice meals. I like to make good stuff, but I just don't love to make time for it. So I'm gonna say for sure a chef.
Kristyn
It does, it takes so much time.
Jen
Yeah
Kristyn
You know, not just cooking. But then there's cleanup afterwards. There's like procuring all of that food and making sure you have every last ingredient. I'm always missing something and having...
Jen
That happened to me tonight!
Kristyn
What is the best part of your morning routine.
Jen
So the best part of my morning routine is that I run with friends about four days a week, I just love to get out and be outside. I love running and moving and being with them is like the best. So you know, just to have a great conversation in the morning or just to be out in, you know, do something hard in the morning with somebody else that you just wouldn't do on your own is the best. I mean, just starts my day off well, you know, get up early and go.
Kristyn
That's amazing. Are these friends that you created out of mutual wanting to go run in the morning? Or existing friends that decided to get together and do this?
Jen
So, kind of a combination. They were friends and then they were my youngest girls friends, like from their class, their moms. And so I guess we just all started sort of talking and we figured out that, I mean this has been years, that you know, we all like to run. And so we just started running and we've been doing it for...I can't I don't even know, I would have to think about it. Four or five years at least.
Kristyn
Really? Wow! So cool.
Jen
Yeah, its great!
Kristyn
Which reality TV show would you most likely star in?
Jen
I think I'd say the Amazing Race because I don't really like, I don't really like drama. But I do like competition. And I think it would just be super fun. Like, it's like a pair I'd be like, oh if my husband and I did it'd be so fun. You could see the world and have challenges and I could have him come along and he'd tell me where to go and then I can do the challenge part. I love that part.
Kristyn
Very cool. What is the skill you'd like to master in the foreseeable future?
Jen
So I think in the foreseeable future, you know, that's hard one because I think I have a lot of things I'd like to do and when it's a skill that makes it harder. so things I like to do that I would think it'd be really fun would be like, we've renovated two different houses not personally but we've had people that you know, we've done all the work towards it and we've had people do it. But, I would love if I could do something like that, like renovate houses, refinish furniture, like do stuff like that. My sister, one of my sisters and I, we always say we would call ourselves the "Junk'n Sisters" and we'd find all the junk and make it good again, you know, like pick it up and like...
Kristyn
Oh, how fun!
Jen
...but it's not, that's not maybe not necessarily a skill, but it's like something that I think would be fun to do.
Kristyn
That is so cool. I feel like that's, you know, anytime I have HGTV on, I deem myself worthy of like rehabbing an entire house, right? I just think that is so cool. And like seeing that, you know, before and after and all that.
Jen
Oh its so fun! Yeah.
Kristyn
I am on board for you really diving into that skill. That's very cool.
Kristyn
Yeah, it would be really fun.
Kristyn
Yes! So now, if you wrote a book about your career, what would the title be?
Jen
So I think the title would be simple, that would be "Balance." Just balance, because I feel like, there's so much that my career is not just like my career. I think about it as sort of like life, the parts, you know, emotional, physical, all those kinds of things that go into life. And so I feel like it's, there's a whole lot that goes into the word balance. And I see it as like, balancing what I do at home, I have six kids. So I'm like, now that they're all getting a little bit older, it's so different, but when they were little, trying to do everything, and you know, I also I work part-time, so that's helpful, but I've always made that be like, my kids were like, priority. And then work was priority when I was there. So I tried to find that really good balance. And then I just think balance in my job. I mean, they're like, that's truly a word that we talk about all the time, you know, like, standing on one foot, just standing, just sitting any of those things that are just all kind of pertain to kind of come around to that one word is balance, which kind of, I don't know, puts it all together.
Kristyn
It truly encompasses everything, really. And, I mean, I mean, truly, you just hit it there. And I, honestly, that just took me back a little bit, because it is so true, and so relevant to everything that, you know, the medically complex community is going through. And that, you know, physical therapy encompasses and accomplishes. I love it. And really, that kind of leads me into being curious about more of your personal life, too. I mean, I'm embarrassed to say this, but I did not know you had six
Jen
kids. Yeah, I mean, yeah. I mean, you know, that's, it's different. Like when you're there, it's not like, you know, we, I don't know, sometimes there's just not as much time to like, get into all of that kind of stuff. So, you know, I have two sisters, and I lived here and then we moved to Ohio for quite a few years, and move back. And my sisters, one of my sisters is just two years younger than me and one's 11 years younger me, which is really cool. So I have younger nieces and nephews, which was super fun. I met my husband at slow. We have six kids, and they're now ages are 21 1918, almost 15. And I have twins that are 13. So like, yeah, so they were like little all together. They were eight years of those. They were like there's like our world obviously. So and they're busy, busy, you know people. So personally, that's I mean, we're just busy doing stuff always, you know, go in places, practices, sports, enjoying other relays what we're doing.
Kristyn
So what brought you to your current professional role? Was it you know, the the large family bringing on the inspiration to pursue physical therapy, or was that the career from the get go? How did the two interact.
Jen
So my sister, my sister, that's just two young years younger than me, she was hit by a car when she was 13. And I was 15. And she had a lot of physical therapy. So it's kind of like the introduction to something I had never really known or knew much about. So I went with her a lot, got to watch got to see what she was doing. Got to see her progression, and just, you know, all the different things and all the many ended up being multiple times in many years. So it was kind of like I got to see a lot through that. And I just really enjoyed it. Like I just thought it was really interesting. So I knew I wanted to do physical therapy, and I always thought I wanted to do pediatrics too.
Erica
Many of the pediatric therapists that I have come to know have been drawn to their profession through some sort of personal experience. And by the time that they have come into our orbit, they have worked with many patients and families, teaching them how to adapt, supporting them through specific challenges, and cheering them on through each little breakthrough. But most of us new parents of children with disabilities, we have no idea what to expect from these new people who have entered our lives in our minds, at least at first. It just feels like one more appointment. We have to show up on time to one more person Then we have to relay information to. And oftentimes, all of that can feel very overwhelming. Because my experience is that of the overwhelmed parents, I have rarely thought about the challenges the therapists face in meeting each new family and learning where they and their child are, at that point in their lives, and development.
Kristyn
From my experience, I have seen that you, as a physical therapist and our other therapists in Luke's life are constantly working with clinical medical teams, other therapists, schools, sports, and of course, the parents and caregivers themselves, and forgive the pun. But it feels like being a physical therapist requires a tremendous amount of flexibility and adaptability. I think back to when Luke first became your patient, he was three years old, and we had just graduated out of Missouri first steps. For those that don't know, first steps is our state's awesome early intervention, therapy services program. Luke qualified when he was 13 months old, and had the same PT and OT at his side and coming into our home, and working with us most of the time on a weekly basis, from 13 months old till three years old. So after aging out of that program, and then coming to meet you, I was actually very nervous about bringing Luke to this new environment, especially because we were moving from being in our own house to being in a physical facility. And if I think about it, really any time we've had to add or switch a member of Luke's care team, it's been stressful. I'm sure other parents with medically complex kiddos can relate to that cringe of a new patient form that has three blank lines of space on the medical history section. And you know, whether we're attaching a already printed PDF, or we're giving the three lines summary of a very detailed history, it's, it's kind of excruciating to bring someone else in the medical world up to speed to where our kids have come from and where they are now. So that was where my head was when we first met you. But now after almost two years, I am in awe of the progress that Luke has made, not just from a physical standpoint, but the confidence that he has built. And the excitement that he has every single week, he actually calls the physical therapy office, the PlayPlace. Somehow, you have threaded that needle of empowering Luke to believe in himself and push himself. And even if he can't do everything on the first attempt, or throughout the session, he knows that he's working towards his goals. And really, when we talk about working towards goals and sessions and all of the routine, it sounds so regimented, but just want to clarify that you are doing all of this and working on these goals, by creating an environment that feels like a fun game for Luke, which is why he calls it the play plays, I'm sure. So you're doing all of this for Luke, you're bringing our family to this comfort level and to this, this admiration of Luke's progress. But Luke is not your only patient. And you're doing this repeatedly for other patients, and they all come from different places and have different goals. So tell me just about the age ranges and the diagnoses of the patients you have. What What kind of spectrum are we looking at that you are having to adapt to? And work with on such such a large scale I imagine.
Jen
So I'd say it's a pretty wide net but been doing this for a really long time. So I've had the opportunity to see lots and lots and lots of kids. I say I see birth to maybe preteen but most of the kids I see I think are babies that's my majority of my population. I see a lot of babies from NICU, but sometimes I'll follow those babies forever, you know, for a long time. So they're not always they're not just babies, I might see them all the way like Lucas age or I don't I think my specialty more is in sort of some of that early preterm stuff, but I love love kids like Luke, that is like I see, you know, I've seen lots of kids live to see all kinds of diagnosis, neuro diagnosis, ortho diagnosis, we see lots of just what considered a developmental delay with no diagnosis or torticollis, we see a lot of that babies, you know, so we have so many different kinds of varieties of kids. But I think that's what I love, I love the challenge. I love to be able to like to be able to plan that and to be able to be like, Oh, I have so many things I get to think about and do. And especially like for Luke, where you're like, okay, and for every kid, even if they're a baby, you're looking at him as the whole child. And like you said, empowering Luke is, is the best. I mean, if he feels good about it, hey, then we're gonna do it. So for every person, every child that I see, like, if I can make them feel good about what they're doing, that's exactly what you want to see. Yes,
Kristyn
I wholeheartedly agree. And I think that you, you really hit on something there with with Luke, I know, something that you have helped him to learn how to do himself is problem solved. And you know, evaluates, there's something that I don't necessarily want to do, right, I don't want to go and push that up the ramp. But I do want that toy frog at the top of the ramp. And so you have never made Luke do anything. Luke has decided what he does every step of the way. And really, it's through your guidance, and your encouragement and your support in that problem solving that he's been able to progress as far as he has. Tell me a little bit more about babies, though, because Luke has been in physical therapy since being a baby. But here we are talking about so much of Luke's activity now involves that communication, that he can also provide back to us, right? So tell me a little bit more about physical therapy for babies? And how do you approach that? And what does that really look like?
Jen
So I think for babies, I try to give parents lots of information, as much information as they want. But to try to understand like, parents are really good at reading their babies and knowing what they want, they really are. But there's times when there's things that we can do that to help them positionally or just do some different strengthening kinds of things that might be very, very simple, the way they hold them, the way they pick them up the way they put them down on the floor, just to be able to give a little bit more, so that baby has to work a little bit more, but you're not making them cry or making them sad. There's a lot that can be done for babies, you know, just to give them where I always talk about this, this great underlying foundation that needs to happen as an infant. And if you don't have that, the rest of your progression of skills are just going to be really, really hard. So it's like early intervention, obviously is, as you know, because Lucas had it is so key for everything that they are going to do with further future. I'm a very big promoter of you know, if you feel like you need something coming at it, because you even if you only meet with a therapist, one or two times, at least you have a better understanding of your child at that point, how you can help make their world in your own a little bit better.
Kristyn
It's, it's so true. And we we kind of joke about it in my family that we've all been ruined by PT and OT because I truly I've never, ever since Luke started, PT and OT physical therapy and occupational therapy. I have not purchased a toy or a piece of you know, equipment or furniture even without evaluating it from a PT or OT PT. I love that. You know, like, and it's it's such a positive thing, right? But I do I truly look at any toy store anytime it could be a quick target run. And I'm sitting there like, oh, actually, let's get this size Mario, because that will really help with your question. It is. It is so true, though. And I think that's, that has that is because of that early intervention.
Erica
I love this example of how therapy services have shaped the way us parents look at all the things that make up our environment, in a whole new light with a whole new perspective. And there are just no words for how great it feels to see our kids respond happily to the changes that we've adopted in to our lives, thanks to these lessons from their therapists. But it is important to note that adopting this new perspective, it's not one that comes easily for everyone. Learning that your child may need lifelong therapy services, it can feel very defeating at first, especially when you see your child's peers hitting milestones so quickly, what seems to come so easily and naturally to others, is something that your child is having to work extra hard at, or may need extra support in mobility aids in order to accomplish. I want to know that these are all things that we parents embrace and celebrate. But at first, it's a very hard reality to accept, mainly because you just want your child to have it as seemingly easy as everyone else.
Kristyn
You know, I remember the moment I realized that Luke's physical and occupational therapy needs were going to be much more complicated than just recovering from his heart surgeries, as if recovering from heart surgeries isn't complicated enough. But it was a specific follow up appointment, where I remember, Luke was about 12 months old. And his cardiologist told us that, you know, we're at a point now where he is physically healed from his first two heart surgeries, and not meeting those gross motor, fine motor developmental milestones, we really couldn't, couldn't contribute to the medical trauma he had experienced to his heart journey up to that point, that something else was at play here. And I remember, you know, kind of pushing back originally on that and thinking, you know, we're still in that mode of problem solution. And, you know, no, no, we we agreed that Luke had two heart defects that he would be born with. And there were two heart surgeries, and we did the surgeries, and he got through them. And now we're done. And this isn't fair, right. And I had to quickly get over the, you know, the initial pity party of, there's something else at play here to really break brace myself for the journey of seeking out that genetic, what would end up being that genetic diagnosis. It's funny, though, because throughout that journey of specialists, and inconclusive labs, and tests, and bloodwork and referrals, and whatnot, every single specialist, we saw, told us that regardless of the diagnosis that we would find, more than likely, the best long term plan for Luke would be to have consistent physical and occupational therapy. And that's when I really came to embrace the idea of no matter what is going on, no matter what person's name is attached to whatever diagnosis we we come to, at that point, that we had a plan. And that plan was therapy and physical therapy and occupational therapy would help him improve, meet goals that he would be able to set for himself, eventually, and it became more of a more part of our lifestyle. More of a mindset. Tell me about what portion of your patients are in physical therapy for an acute condition or a finite period of time, versus those of us who are in it for the long haul? Do you take a different approach to your physical therapy plan for both of those groups?
Jen
I think that I think we I see more that are long term because I think they're in some ways you could define some of them as finite now, you know, there might be kids who come in that do have a surgery or you know, have a something just to define, you need to be seen for three weeks. I do not see kids like that very often. If we have kids who come in and maybe don't have a diagnosis or come in just thinking kind of like you were saying like there's this one thing, you know, and then we start working, you know, like, okay, you know, maybe it's not this one thing. So I feel like very often it's not finite, because even if I see a baby, like, you know, parents will ask me, you know, like, when do you think they're gonna walk? Or when do you think it will be finished with this? When do you think they won't? You know, and I don't have an answer for that, you know, I mean, I, in general, I could given a timeline once we've started for a while, and I can see progress and see what's going to happen. But generally, we all know, every child is unique. And so there's a lot that goes behind the progress that they make. There's so many factors. So I'm gonna say like, most people are just not finite. And that's hard. That's really hard, as hard as you know, a therapist to say that, and it's hard fora parent to hear that.
Kristyn
Oh, you are so right there. I mean, you you really hit on something where you? I mean, I know I've been that parent to ask, you know, and truly, it's not. It's the way that we are prepped to be parents that milestones are a chart to check off, and then you know, there's a there's a schedule to maintain. And that all of these, these medical, these physical, whether it's diagnosed, or whether it is a developmental delay, that, that there is surely a finish line where we just get to start with the normal stuff, right? Yeah, and it is very hard. And that was, that was truly a very difficult lesson for me to learn and, and really appreciate, I think, was just that we're actually we're actually going to just take all of that preconceived ignorance that you have as a, as a new mom, and we're just gonna throw it out the window. We're gonna start fresh, right, right. This is your child, and every step of improvement they make every attempt that they make is success. Yes. So that I Gosh, and just to, to know that you have to carry these parents through through some of that. I mean, you know, in that realm, you maybe emphasis on the therapist side of you. I imagine, do you I would say, Do you have a different approach then for when when you kind of noticed that things are going to be a little bit more long term? Or do you sometimes maybe wait to see when it's going to be more appropriate to let parents in on that, that awareness? Or do you think it's, it's just kind of we, we hit our objectives as we, as we go along, and, you know, see where we are each time? I think, you know, I'm truly an optimist.
Jen
I just don't like to put a you know, like, say that this is like, Okay, I kind of you said it before you when you said, You know what the best thing for Luke is that you need therapy, no matter what it is. So that's kind of my reasoning behind it. Like, yes, I, you know, if I see other problems, or I see other things that I think you know, what, this is not going the way we thought it should go. Even if it's not within the realm of physical therapy, maybe it's in the realm of speech or socialization. socializations or something like that, you know, I do have to pick the right times, I have to make sure parents ready and to say, like, hey, you know, I think maybe we should think about, you know, speech and language, or we should think about, you know, something else or, you know, or if it's very helpful when a parent brings a concern to me, and then we can talk a little bit more about it, because it's sometimes really hard to broach a subject where, you know, a parent doesn't think there's anything wrong. And that's when you just really have to, you know, use the pediatrician or because, you know, when you come in, maybe for a wheelchair, that's a time when you could discuss things or the pediatrician could discuss things, but I will bring in other therapists too, sometimes like other therapies to try to be like, Hey, here's what I'm saying, maybe, you know, this is more your specialty, could we? If they're open to this, we could get them in and see because I think, obviously, knowledge is power, and you want to power and power and give this knowledge to the families and parents.
Kristyn
But you have to give it in the right way. Because your parents will run away. There's too much given and they're not ready for it. So it's so true. I learned I feel like I learned to kind of lean on especially when Luke was so young and we were still kind of getting kind of hit by the brick wall of, of reality, right? And I remember, you know that that line of acceptance of, you know, between like, kind of resisting what was what was really happening in front of us. And then not only embracing it, but kind of, you know, especially when Luke was a baby, I feel like I was leaning on his therapists, as like, secondary moms. Right, you know, is this normal? Should kids be? Should their noses be running this much? Or is this and, you know, and for me that I was also a first time mom with Luke too. So I had no concept or you didn't have anything to compare to? Yeah, yes, we had no baseline. And so you know, there were things that I, you know, you develop this trust with your therapist, or at least, I found so much benefit in developing that trust, because, because they would be able to tell me, you know, I have noticed that Luke's been kind of showing this behavior. And that's not something we typically see in kids his age. And so maybe that's something to check into. And I mean, I took those notes I followed up, and it was such a resource, so much of being a parent of a medically complex child can be so isolating, especially if you don't have the resources or the connections of other parents who are dealing with the same diagnosis that you're dealing with. And so, I mean, I think that you probably are often finding yourself in that position, kind of being that that secondary mom resource to a lot of your parents, especially the babies, I would imagine. Yeah, I think that happens often a lot of questions and a lot of Yeah, concerns.
Erica
I think one thing that we do not talk enough about is how intimate the relationship can be between a family and a child's therapist. These people who were once strangers, they entered our lives are one of the most vulnerable times in my experience, they treated us and our children with kindness and compassion. And they kept coming back. Week after week, they came back into our lives, asking us how we're doing, noticing changes in our children, noticing changes in US caregivers. And that is such a profound experience for us caregivers, especially for those who may not have that kind of consistent support from any other source. Meanwhile, we get the privilege of learning what it feels like to trust. And I mean, to really trust that others are looking out for kids, seeing our kids as capable, despite whatever physical or developmental limitations they may have. Thanks to their therapists, we get to witness our children being fully accepted. And that sets an important precedent for the rest of their lives.
Kristyn
One of my favorite parts about going to PT is that I get to go back to the big playroom with Luke. Observe the activities that you're doing with him, talk to you about what he's done at home and get ideas for, how can we incorporate PT into our plans for the upcoming week. Plus, it's just fun, to go to an appointment where he's happy and gets to play and have fun himself. I have though, on occasion, as I am watching you doing your professional job. I've thought about what it must be like to have a career where you have of highly invested observer for each and every patient and appointment. Right in the room with you. You must see all different parenting styles, different engagement levels from parents and caregivers, like what impacts do parents have, in your opinion on your approach with patients and the outcomes that those patients see. Do you have any advice for parents of kids going through physical therapy, especially those of us in it for the long haul?
Jen
Yeah, I think that you're right. You have all levels of parent involvement. It impacts a lot I mean it in I mean, you're You are wonderful parents, you always are doing like everything and more that we talk about for Luke and makes such a difference. It's amazing.
Jen
I would never say that there's a bad parent, because there's not. You know, I see sometimes very some very medically complicated children, you know, that. Sometimes I'm like, you know, I understand this is right now the last thing that you need to worry about, I know you have so many things to go to. So sometimes I'll be like, You know what, let's just take a break, why don't we just take a little break and kind of see how it feels, and you can come back to it, but I never would want somebody to feel guilty because they thought they couldn't make it that day, or they can't make it for the next six months. Because there's so much that goes into life that you cannot, I could not be the judge of what you think you need in your life, or if your child needs at that. And in whether it's like, coming from me, or from Luke days looks just like, nope. Right? You happen, right? Like I talk about his improvement, as if like, every week, we're like, Oh, yes, and reach for the stars, you know, like so. So, it is just like no meltdown, not getting in that swing, doesn't matter what you told me to do. Right? And, and so Jen has to like, realize, you know, okay, so that is not going to be in the cards today. And so let's find something else, or how can we, you know, find ways to be productive otherwise.
Jen
And I just think it's important for parents to know, and for kids to know, kids can say no, like, you know, you can say no to that today, that's okay, like we can find something else to do. But I think it also makes them want to do more great. Like it makes them want to do like, oh, I have a choice, okay.
Jen
But I view my job as a therapist, to try to educate the parents to understand why are you here, what I do for in therapy is not not going to make that much of a difference. If I'm not letting you know, my job is to make sure that you think this is really good. And that you think that I'm going to make a miss and you together, all of us are going to make a difference in your child's life. Because parent interaction is so key into the Sick Kids success. So that's actually part of my job, my part of my job is to make sure that you see the benefit and being there because if you don't, then
Kristyn
it's not going to work. You know, it's not, yeah, one time a week for 45 minutes is not going to make you better. You know, we know that it is it is so true. And I would agree with you and, and as a parent who's probably are definitely a lot more apt to like, jump in and try to, you know, help my kid stand back up after he fell down trying something and why he started crying to have the meltdown. It's it's been a learning curve for me really, to learn how to step back and watch him problem solve, watch him develop and improve and gain that trust in his own strong body. Right? That has been a big learning experience for me.
Jen
That's good. Because I think that even if you give it to the child, like even if you're talking to the child, I think that helps the parents understand too. I won't let you fall like I promise, like, this looks really hard and scary, but I think that helps parents feel like okay, it's gonna be okay, you're gonna be okay. Like, even though you're like, there's no way that they can do this.
Kristyn
Yes, you know, yes. You're like, if you if you don't just give that opportunity, we will know. So parenting is so hard nowadays, because there's so many voices Oh, for in our ears, right? telling us what's right, what's wrong. You know, and it's all seems very trendy, almost, you know, what, what's, what's supposed to happen or what's, you know, too soft or too harsh or too, you know, and then you throw in these like a disability or you throw in a medical complexity, and we're, now there's a whole arena of uncertainty involved in that. And the consequences of not choosing the right path or not engaging to that write a level that the consequences are that much more severe.
Kristyn
I am just constantly taking mental notes when we're, when we're at Pt. While that works really well, he really responded when Jen said, you know, believe in your strong body, I know you can do this and use your strong muscles. And you know that that clicked with him. And so I will take kind of a mental note of, okay, okay, remember that that phrase or something that you've done recently is to hold on to his shirt and you kind of just pinch the back of his shirt. So he kind of just feels that you are holding on to his shirt, but you're not providing any physical support. He has this like placebo effect. Exactly. So I just love that. And for me Luke's progress in physical therapy, it, it's been such a source of joy for our family that, you know, in a place where anything related to his medical journey, there have not been that many sources of joy for us. So it's just a really special place for us. And you are such a big part of that. And I was wondering, what brings you joy in your role over your career, or just now or most recently? What brings you joy?
Jen
I think it's, I think it's a lot of the same things that bring you joy. It's very fun to watch those successes. I mean, it never gets old, it never gets old to see a child first walk or stand or jump, or it's just those little tiny things that like, make your day. And that's all it has to be is just these little tiny milestones. Sometimes they're big, and sometimes they're small, but those are really what bring joy.
Jen
I mean, I feel like, I think I think another thing like if you talk about career, you know, my daughter is going to be a senior at Marquette University. And she's, she's in physical therapy, and I'm going to go like, um, like, if she sees that she knows how much I like it, that she was like, Oh, this is you know, and she debated and debated and was like, I don't know, I don't know. And she would go back and forth. And then she's like, Yeah, that's what I want to do. So I'm like, you've chosen this. And so you must see that how much we and I enjoy it so that you would choose to, you know, so that really is cool to me that like, Oh, she like sees this as like this cool opportunity to make a difference also.
Kristyn
Oh, talk about inspiration, right? Yeah, it's right there. Yeah. Oh, that's, that's amazing. So I have a final question for you. And it is in the tradition of this podcast, a typical truth always ends our interviews with this dream scenario. So I will pose the question to you, let's pretend for a moment that a miracle has happened overnight. And suddenly, without warning, Pediatric Physical therapy has become the perfect and flawless system that you have always dreamed of. without anyone telling you that this miracle has happened, what is the first thing that you would notice that would indicate this change?
Jen
I think the first thing I would notice is just that patients could come in freely, they could take as much time as they needed, could see them as often as we wanted, that they didn't have to have all the insurance bogging them down. So I guess I guess I can't say there's just one thing, it would have to be a combination of a whole swirl of things that would just make everything just meld together and feel like, you know, what, it would be so cool if they could be seen more often. And not that, like I said, not that I'm providing the magic that's making it all happen. But to be able to see multiple times, so you'd like even in a week, so that you could just have this more continuity of care. And like timelines would just be open, you know, and it just wouldn't be so hard when there wouldn't be as much that went into it. I guess I could say on the note writing all the other background stuff that we talked about earlier, if it was just, I would love that, if it was just me, a parent and child and we could just go through all the things we needed to do and be like, Okay, we're done, I'll see you tomorrow, you know, or I'll see in 5 days or whatever it is, and then we just made this, you know, it would just be so amazing to see how different it would be and how incredible it could be.
Kristyn
That resonates. So, so clearly, in my in my mind, too. I mean, we, my family is so privileged to have such access to not only healthcare in general, but to private insurance and to all of the privileges that come with that, and it's still very difficult to get clearances. You know, I imagine physical therapy, or at least in my experience, physical therapy has been something that's more difficult to authorize. Yes, for insurance. It is something that is harder to do medically necessary. You know, depending on who or what provider you are working with. And then there is a full range of coverage. And so and when you are going every single week. Even a small copay can really add up right at home, and that is, again, speaking from that outrageous amount of privilege that I that I wholeheartedly recognize that we have. So, so then to think about the barriers that exist for those families who do not have those privileges and that access level that we that we do that, just the I can only imagine what they're going through and the what would be different if that access existed across the board. I love that you picked that it's it's a consistent theme in this podcast, and it's something that I wanted to recognize in this conversation. So I'm so glad that it was what we can land on here, because you're so right, that consistent and deliberate and dedicated, early intervention that really follows our kids that can make all the difference I know it has for Luke, and I'm so excited about what the future has for him with you. And his physical therapy journey.
Jen
I do too. Luke's amazing, and he is going to do amazing things. So it's really, really fun.
Kristyn
Jen, thank you so much for taking t he time to have this conversation. Today, I don't often get the chance to have conversations with you that are longer than maybe 30 seconds or so. And most of the time, I choose to fill that with bragging about how awesome my kid is or how much progress he's made over the previous week. So getting to talk to you and learn more about your life has been a real pleasure for me, and I'm sure for our listeners as well.
Jen
Thank you so much. It was great to also hear your perspectives and to hear all the things because it's not the kind of things that I always get to discuss with parents. So it's really, really nice to just hear, you know, what it's like to feel like to be a parent and have to come into therapies every week and all your specialists and all those things. It's not easy. I mean, I know it's not easy, but it's it's good to hear it too from parents, so...
Erica
if you love the artwork for season two, head on over to our online shop, where you can find a variety of merch. There are so many options to pick from, but my personal favorites are the tri blend T shirts, and the loose medium weight sweatshirts. If you love this show, and you want to ensure that you will hear more for years to come. Please consider donating $1 Each episode, every little bit helps to support this podcast and anything more is donated right back to our community. One of the most meaningful and totally free ways to show your support for this show is to subscribe, rate and review. By subscribing to the show you'll automatically get notifications when a new episode is released. And by reviewing you will help to make this podcast more visible to others. I can't express it enough just how much your words of encouragement mean to me and the guests on the show. We share our stories with the hope of helping others. And that brings us so much happiness to receive that personal validation from our listeners. We love it so much that we proudly share it on our website and social media. So thank you for all of your support. Your participation as an audience is deeply appreciated. If you can relate to this content, and you're interested in guest hosting a season of your own, please don't hesitate to reach out to me. You can contact me through the website at a typical truth.org Or you can also find a typical truth on Facebook and Instagram. The beautiful soundscape behind this podcast is titled Rouga it's performed by my favorite contemporary music collective Amina. The cover art for a typical truth was designed by Eric Mitchelton
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