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
Links related to this episode:
Early Intervention Therapy Services
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.