Episode 355: Building an Inclusive Playground and Community
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Who are Jesse and Holly Erickson and how did Rachel first discover Bedford’s story?
Welcome to Talking with Tech. I'm Rachel Madle, and today I'm so excited to share an interview I did with Jesse and Holly Erickson. They are the proud parents to a little boy named Bedford who has Schwartz Jample syndrome. And I actually found them when I was scrolling around on Instagram and I completely fell in love with Bedford. He is such a sweet boy. And I was so impressed with the advocacy for an accessible playground. So in this interview, I am chatting with the parents all about their journey. Here is the interview I did with Jesse and Holly Erickson.
Welcome to Talking with Tech. I'm your host, Rachel Madle. Joined today by Jesse and Holly Erickson. I'm so excited to have you guys here. Thank
you for having us.
Thank you.
Yeah. So can you just start off by telling our listeners a little bit about who you are?
Um, yeah, so uh we're Jessie and Holly. We've been married for twelve years. Uh we have two sons, uh Lincoln, who is four, and Bedford, who is three. Um and uh we both are professionals in the community. We're from a small town, we're we're both from the same county, uh met in college. Um and uh really have been together ever since almost. And um we yeah, finally decided to have kids, got two awesome and very uh uh active boys.
Um,
but we found out, I guess it's been almost two years now ago now, uh, that Bedford has a super rare genetic disorder called Schwartz Chample syndrome. Um which set our whole family on a a very new trajectory in our life.
Mm-hmm. Well, that's how I found you guys. I found you on Instagram actually. the wonderful life of Bedford. Uh we're gonna link to that in the show notes, but um you guys are really advocating a lot to help Bedford have an inclusive playground. And I saw The Instagram and I was like, fell in love with Bedford immediately. I just was like, oh, this kid, like, I just want to like give him a hug and like, I wish I lived in your town. I would love like doing speech therapy with him. Um, but I also just love your mission. And it's it, it is really unfortunate that it takes, you know, understanding individuals with disabilities to start recognizing how inaccessible. Uh. Playgrounds are in lots of places, not just playgrounds, but um that's how I found you guys.
And so I was like really excited to have you on to talk about your experience and of course share your project and hopefully get some people interested and you know donating. Um so we're gonna go into all the details, but Before we kind of launch down that path, I just want to hear about your experience. You know, we have a lot of listeners of this podcast who are parents of children with rare incidence disabilities, a lot of practitioners and educators that listen who work with children that have rare incidence disabilities. And so tell me a little bit about kind of the journey to diagnosis.
Yeah. Um so w he he seemed really normal. Uh we no no indication, um no Nothing that was like a red flag or anything like that until he started walking. Uh when he started walking or learning to walk, uh his pediatrician was like, Something's not quite right. We maybe we need to send them up north and just look at, you know, getting some braces or something like that.
Uh so
we went to an orthopedic doctor up north, um, near Chicago. Um, and um She wanted to do some x-rays and when she came in with the x-rays, like, you know, she's walking in the door and I saw her face and I was like, oh no. Like it you can just tell something's something's up.
Mm-hmm.
That yes, she's like something is it's not just what I thought it might be. Um, it's not a braces situation necessarily. I'm not sure what it is.
And
there we got referred to uh a couple of different places, but mostly the you know, the genetics testing that we needed to get so they could even just figure out what was going on. Um, that was a process. It took a while to get in, took a you know, they had a bunch of questions, they had to ship us a thing to get DNA, just all this stuff. And um and then we had to wait for three or four months to three months.
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Chapters
8 chapters
1
Who are Jesse and Holly Erickson and how did Rachel first discover Bedford’s story?
0:10–4:56
2
What was the journey to diagnose Bedford with Schwartz‑Jampel syndrome and how did the family cope with the uncertainty?
4:56–10:47
3
Which day‑to‑day challenges (mobility, dental, car‑seat, pain) does Bedford face because of his condition?
10:47–18:40
4
How did social‑media posts turn Bedford’s story into a viral movement and a source of community support?
18:40–26:08
5
What inspired the creation of an inclusive playground and what were the first design ideas?
26:08–32:55
6
How did the family secure funding (gala, grants, merchandise) to build the playground?
32:55–40:32
7
What are the next steps for expanding the playground and supporting other families worldwide?
40:32–43:38
8
How can listeners get involved, donate, or follow the inclusive playground project?
43:38–43:45
Speakers
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