"Special Education Advocacy: (Pt. 1) Love for Nursing, and Self-Determination with Jeanette Lange"

🎙️ Episode Show Notes: FAST 15 Podcast 🎙️

📍📍📍📍📍 Welcome to the FAST 15 podcast, your go-to source for game-changing tips, advice, and motivational tools tailored for special educators. Transform your special education classroom in just 15 minutes with insights from amazing educators. Proudly sponsored by Specially Designed Education Services (SDES), publishers of the Functional Academics Program, offering specially designed education services.

Key Points from the Episode:

📍📍 Jeanette's Unique Perspective: A nursing professional with 30 years of experience, specializing in pediatrics, NICU, oncology, and bone marrow transplant.

📍 Transitioning to Special Education: Jeanette shares her experience navigating the special education system with Sam, emphasizing the importance of self-advocacy and transition planning.

📍 Self-Determination and Self-Advocacy: The critical role of empowering young adults to advocate for themselves, especially in the context of the IDD community.

📍 Golisano Fellowship: Jeanette discusses her involvement in the nursing leadership program supporting individuals with intellectual and developmental disabilities. The focus is on educating healthcare professionals to provide inclusive and supportive care.

📍 Impact of Technology on Self-Determination: Jeanette's thesis explores the profound impact of technology, especially during the COVID-19 pandemic, on the self-determination of individuals with IDD.

📍 Bridging the Gap: Addressing the challenges individuals face as they age out of pediatric programs and transition into adult healthcare, emphasizing the need for accessible and understanding medical services.

📍 The Future of Special Education: Highlighting the importance of integrating technology into transition curricula, preparing students for independent living and self-determined decision-making.

Don't miss part two of this enlightening conversation with Jeanette Lange, where she sheds light on the crucial role of school nurses and related service providers. Until then, continue being the champions that you are. Be well, and we look forward to bringing you more insights on the FAST 15 podcast.

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Transcript

Speaker 1: 0:01

I'm thrilled to introduce Jeanette Lang, a committed nursing professional who blends her healthcare expertise and loving mom role to empower her son, sam. Her mastery in nursing and engagement with the Golisano Fellowship equip her to be Sam's advocacy champion, balancing her profession and family life. She also aids Sam's education, communication and self-advocacy. And for Jeanette, it's more than nursing it's about nurturing potential and dismantling barriers in the IDV community. Let's jump in to our conversation. Jeanette Lang is a great friend of mine. You really are a bright light and it's a gift to have you with us today.

Speaker 2: 0:46

I'm always excited to get to talk to you.

Speaker 2: 0:47

We always have so much fun just talking about how we met and how Sam brought us together and how I knew he was going to do well with you. Your class was amazing I think I've told this story before that when he walked in your classroom, you have all your kids right draw. However, they communicate what they need to do to be successful in their classroom, and that was a big impact on me because I was like, wow, I didn't know he could do this. And that's when I was like self-determination, self-advocacy, we need to jump on it.

Speaker 1: 1:16

Those are our words that we're anchoring to for your son and for a lot of the work that you're doing, which is one of the reasons why I wanted to have you come on. I could talk for days about Sam, about your son and the connection that we have, and that's an ongoing relationship that I get to enjoy when we get to walk through together. But you have a really unique gift in the career that you have as a nurse and now on a journey of doing some of your own new learning and doing some things professionally that I really want listeners to hear about and the crossover from nursing your career-long nurse and you can tell the listeners a little bit about your background.

Speaker 1: 1:58

That would be great. And just the crossover with the IDD community and how nursing and your point of view and what you're doing with the fellowship that you're partnering with.

Speaker 2: 2:10

Yeah, that sounds great. So I've been a nurse for 30 years I think, probably as long as you've been a teacher and I've always been a Peds, nicu nurse, oncology, bone marrow transplant and so I was advocating for other people's children before I ever had my own in the healthcare system. And then I have two boys and Sam has autism and the journey really started to get them diagnosed and then, once that happened, as parents, your advocates, you're doing all the stuff. And then you realize they go to school and in school you learn about IEPs, all this new language, and at first you're just so overwhelmed You're doing a lot of it yourself and then, as your kiddo gets older, you realize at some point they need to start being able to advocate for themselves.

Speaker 2: 2:52

Kids learn it on their own. Typically, developing kids and even our kids maybe learn slower. Just at first it's your likes, your dislikes, and I think a lot of that is taken away in school because of your IEP right. You're in the system a hospital system and a school system very similar. They're big systems and you have to learn to navigate it. So at some point you have to turn to your kiddo and be like I'm giving you the reins, but you can't expect it to happen overnight, just as an advocate, as a nurse or as a parent. You learn it as you go, and so that's where you came in, because you're like, yeah, I've been a transition specialist and I've worked in the adult transition and now I'm in school and I'm bringing some of the things I've learned to help my students start, because you don't know when You're hearing 16.

Speaker 1: 3:35

Now you've got to set their life up and they have to be ready, and how overwhelming for a parent to sit in an IEP meeting and start talking. Your young adult is just barely a teenager and we're talking about what's going to happen in their adult life, right?

Speaker 1: 3:50

And coming up with all of these goals related to transition. What I love about you is that you took that on, that collaboration with us as an IEP team and me specifically as a case manager, and wanting to start earlier and grabbing on to those ideas of, yeah, I need to have my son be his own best self advocate.

Speaker 2: 4:13

Exactly Because at some point he's going to take the reins and it's any young adult, right. We start giving them at 18, 19, 20, but in our life, in our community, we have to start earlier and it also depends on development. Where are they and how much can they assume? When Sam was younger, he looked in the meeting, said, oh yeah, everything's fine, and walked away. When he was 16, 17, he was like, yeah, I want to do this or this is how I feel about this, and I think I've learned that. So it's hard to give over the reins, but you have to trust in the system and the process. So I think that's so important, really having a strong IEP, having your kids be a part of it as much as they can, because not every child is verbal, not every child develops the same, not every child is ready, but whatever they're ready for, you want to support them and have them participate to the fullest extent possible right, exactly.

Speaker 1: 5:04

With whatever mode of communication that they have and their comfort level. But having them and their voice at the table is so critical to the whole process. And what I loved is you allowed that to happen early on and letting him go to his teachers and share with them what his accommodations were and what the needs were for support. Things like that and scaffolding is just such a big part of what you did. But you can't just like a typically developing young adult. You can just let them go. They learn from their peers just in a natural settings and things. But for him he just needed more of that strategic scaffolding along the way.

Speaker 2: 5:45

Absolutely, and that set him up for success. Because once he was so proud when he brought I can still remember he brought the paper home that he wrote and he handed it to me and he was like I told someone I think it was the biology teacher or and then she I remember her she actually was like I think I'd rather him have two peer supports. Let's see if we can back off on the para, and I want to give other kids a chance, some kids that I've identified, and then that created a social relationship in itself, a more natural one than just a para sitting or sort of yeah, so critical and powerful, yes, and he's still friends with these young ladies and men.

Speaker 2: 6:22

They're all in college and he'll say I texted Lauren or I texted Madison and I'm hearing about their lives and you're looking down the road. Who's going to be his support when he gets out of school? Because once they graduate ATI at 21 or 22, you got to start thinking early. What are they going to do at that point? Are they going to attend college? Are they going to work? Is there going to be somewhere they can go? And once those supports go after school leaves, there's a big gap. So you have to get them ready for it.

Speaker 1: 6:52

Yeah, yeah, to bridge that.

Speaker 2: 6:54

Absolutely.

Speaker 1: 6:55

Okay, self-determination and self-advocacy are so critically important personally for you, with your son and what you've done as a mom, being such a great advocate for him, and so where's the crossover for you professionally?

Speaker 2: 7:09

As I realized, as you age out of the system, you also age out of your pediatric providers and you go into the adult world, which I think this past year we had around 551,000 kids across the country age out of their programs that are now entering into adult healthcare. And adult medicine is not ready. They're really not. We don't have enough providers that understand our kids. We don't have enough specialists. So it was important to me to bring what we've learned going through the years in school and what I've learned as a nurse and as a parent.

Speaker 2: 7:42

Hospitals aren't ready. It's another system that you have a lot of moving parts For people that are just trying to take care of their own healthcare, that don't have an issue. It's very hard. So imagine someone who isn't verbal or has a low health literacy or just doesn't have access to the same doctors or the same technology that everyone has because of a disability. We now know kids we're now seeing in the Down syndrome community. We're having Down syndrome. Adults live longer and longer and now we know that there is a huge correlation between Down syndrome and dementia and it's happening earlier.

Speaker 2: 8:22

So these are things like just nurses and doctors. We didn't know and now we know. So now we have to look at that community and all the other things that go along with having a physical and intellectual developmental hearing site in the hospital, because everyone deserves the same access to care. So that's where I ended up finding this program. It's it's nursing leadership in supporting people with intellectual and developmental disabilities and it's about teaching people, teaching new nurses, getting people with disabilities into the medical system, educating physicians, educating just the whole hospital team, because even sometimes our kids gravitate towards people that aren't doctors and nurses and they form that relationship. So making sure anyone that comes in that room or deals with our kids respiratory, the staff that serves food or cleans up the room, that they all know how to relate to our kids and our kids know that they can relate to these people that are helping to take care of them.

Speaker 1: 9:22

So and understanding the what to share, what not to share. How does all that go? And to feel safe in that context.

Speaker 2: 9:29

Absolutely so. It's the Golisano Fellowship and it's through St John Fisher University and my thesis, I guess my paper that I'm doing is the impact of technology on self-determination in the ID community, and a lot of this came out during COVID, which we all know. We had to go from in-person learning to online and I think many of our kids did really well Damn did your son and our whole class.

Speaker 1: 9:57

It was amazing Because we had tools, we had technology we had access and not everybody has.

Speaker 2: 10:03

that we know even in Washington.

Speaker 3: 10:04

people in Seattle and other areas didn't have technology.

Speaker 2: 10:09

So yeah, and I remember we met that one day, I think you were going out to a lot of your families and saying this is Google. This is just to give us a heads up, because this is the learning management system.

Speaker 1: 10:20

This is how we're going to navigate it. Yeah, google came up.

Speaker 2: 10:23

Scoology parent view.

Speaker 3: 10:25

Like all, of this stuff that.

Speaker 2: 10:27

I had to help them access. So I had to make sure that I knew the technology and could access it to help him get in there, and he had an easier time than I did. He got the platforms or I remember there was multiple platforms you had to access and you had to get in there and some days were easier than others. But from there Sam has done really well with technology.

Speaker 1: 10:48

He actually in our group, where Sam is collaborating with some other young adults and creating scripts and doing videos, and he naturally gravitates toward technology, and one of the things that we want to highlight and really talk about is transition curriculum, with technology embedded in that and self-determination around how to use it, when to use it. How's it going to go from school all the way through to adulthood? Yes, and so you're really focused on that specific thing. So tell us more about your process and what from a parent perspective and then also from a professional perspective.

Speaker 2: 11:30

So I think there's a lot of overlap. When Sam started his last, I think his last year was COVID and then he graduated. So we learned a lot about tech and Zoom, I think Zoom and FaceTime, and then Teams and all these different applications which I remember from families that had sick kids. There wasn't that technology pre-COVID where if you had a kiddo that was sick at home, the teacher came in and taught you. I know there's been a push for a long time and I know here in Bothel we're lucky because we do have some online schools or programs that, but that hasn't always been the case.

Speaker 2: 12:05

So I think, as everyone was impacted, we saw technology like just explode with Snapchat and TikTok and all those things, but you also have to know how to use them. We need to teach them to be safe and understand it and use the technology how to use it appropriately right.

Speaker 2: 12:21

Exactly when you get into trouble, what do you look at? So I think that's one of the things that come into self-determination and come into what you need to learn during your transition, and I know the ATI program here does that. They teach them about technology. Today, if you want to access your own health records, it's all online. Like you either have to have someone give it to you or access it for you to get a shot, to get a vaccine, to make a doctor's appointment no, but no, there's no life.

Speaker 2: 12:48

People are celebrating to do social security, to access a housing, to look at housing it's all online. So I think those are the things we need to teach in our transition programs is how do you use technology safely? Within that, how do I? To be self-determined, you have to make your own choices. So to have choices, you have to have access to that information, yes, and so you need to be able to access your health information. You are. If you look at what happened during COVID, technology, which was always thought of as just the internet, has now become the internet of things like where you have smart houses, we have QR codes. You and Suzanne would probably know this more that all the applications on the phone scheduling reminder apps yes, the lift apps, the Google map apps, there's all those kind of things to remind you to take your medicine, to order your medicine. So you have to learn how to use those things to be able to set up, to live independently.

Speaker 1: 13:47

Hey there, let's take a pause on this episode of the Fast 15 as we don't wanna miss any of the rest of this conversation, where Jeanette sheds light upon the importance of school nurses and related service providers. Be sure to check back with us for part two next week to continue the conversation. Until then, be well and continue to be the champions that you are.

Speaker 3: 14:12

A heartfelt thank you to our generous sponsors. Specially designed education services. Publishers of the Functional Academics Program, please take a moment to learn more about the only true, comprehensive Functional Academics Program that enables students with moderate to severe disabilities to improve their ability to live independently and show meaningful growth both academically and personally, while creating accountability with data-driven, evidence-based results. Visit wwwsdesworkscom to learn more.