Navigating the Unseen: Wendy Ernzen's Advocacy for Families with Disabilitie

SPEAKER_00 0:00

Welcome to the Living the Dream Podcast with Curveball. If you believe, you can achieve. Welcome to the Living the Dream with Curveball Podcast, a show where I interview guests that teach, motivate, and inspire. Today's guest is Wendy Hernson. Wendy is a mother, an advocate, and the host of the Let Plant Houses podcast. That podcast focuses on real life experiences of families who have to take care of loved ones. And Wendy has a daughter that was diagnosed with autism. And she shares human real life experiences of what it's like and for families to be able to have to create systems that don't exist. So we're going to be talking to Wendy about her experiences and how she's helping these families. So Wendy, welcome to the show.

SPEAKER_01 1:08

Thank you so much for having me today, Curtis. I'm really excited to be here.

SPEAKER_00 1:12

Why don't you start off by telling everybody a little bit about yourself?

SPEAKER_01 1:15

Of course. So just as Curtis said, my name is Wendy Ernsten and I am the host of Let's Plant Houses. And uh it is a podcast where we celebrate families with loved ones who have intellectual or developmental disabilities, including autism. In addition to that, I also am a fund development consultant professionally. So I work with nonprofits, help them to secure the resources that they need to do the work they do. And then I, like I said, I'm the post the host of Less Plant Houses, and that is inspired by my own family story. So I'm happily married, been married for almost 24 years. And we have a daughter who is 23 who has autism and bipolar. And then we also have another daughter who is a sophomore just completing, well, they're just completing their sophomore year in college. So that's a little bit about me and my family.

SPEAKER_00 2:11

All right. Well, uh uh, can you share a little bit about your daughter who was diagnosed with autism and um how becoming her mother changed your life?

SPEAKER_01 2:19

Absolutely. So um with Nick, so it kind of, so you know, it started off. We didn't know exactly. Um, we obviously we didn't know she had autism from the get-go. So um it wasn't until about uh two years old um when we realized that she had been meeting her milestones at this point, but was always like on the cusp of not meeting them. And um, but she hadn't um mastered language. So that was like one thing that she just simply did not catch up to. And when we added that up to all the other delays, we had a conversation with our pediatrician, and she said, you know, you might want to go see this specialist who turned out to be a developmental pediatrician, and she recommended that we do an evaluation. And so after doing that evaluation, they determined that uh Nick had um a gross motor delay, um, which didn't mean autism at the time, but it did mean that she had a lot of things she needed to work on. So we started with speech and occupational therapy and a few other things. Um, we moved her from one preschool to another, which put her in the special needs preschool. And um, and we continued to see specialists. So we kept seeing specialists, kept seeing specials, kept seeing specialists because we're trying to get her this, get her some kind of diagnosis, because at this time we didn't we didn't have a diagnosis. So finally they said, well, she has what's called PDD NOS, which is pervasive developmental disorder, otherwise not specified, which basically meant they weren't sure. And she received that diagnosis somewhere around the age of four. Um, it wasn't until age of seven uh that she actually received her autism diagnosis, which is pretty late, um, especially in today's terms. I mean, most people they you ideally you want your child diagnosed around age two, so you can start receiving the services that you need. Um, like for example, yes, Nicola was getting OT and speech, but she probably would have benefited from things like ABA therapy and um some other supports, but we didn't know. So we didn't actually start those things until much later um in her um in her childhood. And so this also created a lot of um challenges for us because you know, not knowing and then knowing what she what her diagnosis was, then that meant, you know, we needed to secure different resources for her at the school, different resources even after school. And um, and it definitely changed uh my role. So my husband and I had, you know, a decision that we needed to make because Nicola did require so much intervention that it really became hard for both of us to work full-time. Um, so I started to work part-time so I could get her to her appointments and get her to and from um, you know, all of her therapies and that sort of thing, as well as school. And that was helpful. But then over time it we realized that Nicola needed even more support. We had a second child. So then I dedicated um, you know, close to a decade being home with my kids so that way I could do the things that we needed to do. So it definitely changed what I thought I was gonna do. I mean, you know, initially I was like, oh, I'm gonna be this career mom and I'm gonna do all these things and you know, raise my kids and so forth. And, you know, it shifted me to being home with my kids, um, which is also a blessing. I mean, there's there's a blessing to being a working mom, to being part-time working mom, or to being a full-time mom. Um, but but the other thing that it did introduce me to was this whole world that I had no idea about, which was, you know, what are disability services and what does that mean? Um, what does it mean to advocate for my child so that she can get what she needs to um be the best version of herself? And so um, you know, I I basically turned into a caregiver and and I've been doing that now for a little bit over 20 years.

SPEAKER_00 6:08

Well, can you talk about some of the biggest realities that you faced when you realized that your family's needs did not fit into existing support systems?

SPEAKER_01 6:18

Sure. Um I guess the biggest reality I real I figured out was that it's it's really the families that have to figure out how to connect those dots, whether you know how to do that or not. Um, so as we talked about earlier, I'm on on the host of Less Plant Houses. And the parents that I found that had the most successful um experiences with their kids were the ones that found other parents because those families would help them connect those dots because they had been there. And um, and then also just simply knowing that you're not alone. So for us, we didn't ex know that or experience that in the same way because Nicola had um she she went through several schools. I mean, as of right now, so here in Michigan, you can be in school until you're 26 years old. She will be, like I said, she'll be 24 this year. Um, so she still has like two and a half more years. But um, with that being said, she's been in 10 different schools. So we really never found our group of parents that some folks did, like if they were in the same school district and grew up with those parents. So I do think I recommend that to parents always if you can find that group of people that get you and get your experience so you don't feel like you're doing this all by yourself. Um, but yeah, so it, I mean, I would say that the biggest reality for us really just it just started with the school district. Um, and and you know, we basically just kept moving from school to school to we could find the resources that you need. I know now all families can do that, but that's that's what we did. Um and so with by doing that, you know, I discovered like I not only was going to be your mother, but I was also like coordinating things for her. I was being her advocate, I was being a researcher, trying to figure out the best things for her, um, always trying to figure out the different problems and solutions. And so um, yeah, so it was just a lot of a lot of different things we didn't expect. Um, I mean, we made us stronger as a family as a whole, but um, you know, definitely that's that's what happens when when your needs don't necessarily fit within the existing support systems.

SPEAKER_00 8:24

Well, was there a specific moment when you realized that live experience could turn into expertise and advocacy?

SPEAKER_01 8:34

Well, for me, honestly, it was overtime. So, you know, I was navigating the schools for years, healthcare systems at times when Nicola needed that because that was always a challenge for her with her sensory needs. Um, but I would say the biggest moment that like stands out for me was when um Nicola was just wrapping up high school and she was going to be moving on to her transitional program. We'd had a six-month period um where we were Nicola was experiencing um more and I would say more significant episodes. So Nick, Nick would have these. So look, let me say this differently. As Nick got older, when she felt like she was balanced and um safe and secure and um, you know, understood what was happening around her, she's joyful and she's lovely and she has so many interests. Like she loves basketball and she likes to go swimming and she loves Disney characters and Halloween and all kinds of things. She has so many interests. But when she's feeling uncertain um or insecure, that's when her anxiety can ramp up, and then that manifests itself into an array of different behaviors. So that can begin with things like she might have this really um high-pitched laughter or um really loud voice, and then that can morph into swearing and at times throwing things, breaking things, and um and just you know, being being aggressive. She can have these episodes that happen, and um and I feel and so at this time we were seeing more and more of these episodes. So they were hell happening for longer periods of time and they were happening more frequently. And so, and I think part of that was her ramping up because she knew she was transitioning from high school to this transition program, and she'd been, you know, with this school for many years. Well, not she'd been there for like four years at the or five years at this time, and um, and she didn't know exactly how to communicate that, even though we were trying to communicate to her like what was next. And so this continued, and we were um we were at this point where we were medicating her every day with a um additional medication that basically would knock her out. We were at times barricading in our ourselves in our room because we'd have to wait for her episodes to um finish and um and she could calm down, and we were doing this on a daily basis, and um, and then we all got COVID, and um and that's when you know the whole thing just kind of fell apart because then we couldn't have any caregiving or support because we couldn't have any contact with anyone else, and um, and she was still having all these episodes, and it was really, really, really hard. And so we had to make a decision at that time what we what we're gonna do. And here in Michigan, the gateway to mental health is the emergency room, even though you don't necessarily receive mental health support in the emergency room. Um, so we spent six six nights in the emergency room and very little had changed. Um, but because there was she'd had a her her most recent episode that made us make this decision was that she had been in the um at a restaurant and had cleared a whole bunch of plates and glasses and broke all kinds of things, and um, and they were threatening to call the police. And that's when we realized, well, this was now no longer just in our home, but this had spilled into the community. And so we knew we needed to do something more. And so, you know, and we had been trying to actually get housing placement, all kinds of things for about 15 months with our community health provider and had not gotten anywhere. But because this was a community event, like it happened in the community, our case was finally escalated, and it took about two or three months, but she finally did receive a placement and the support that she needed because Nick needs 24-7 support. And so what I decided decided at that time was, I mean, I we had been through a lot as a family. We did have this really deeply, this deep lived, deeply lived experience. And I felt like I didn't want anybody else to have to go through exactly what we went through in the way that we've gone through it. And so I wanted to um share not only our expertise, but others' expertise as well. And that's why I founded the podcast after that. So it's about it took us honestly, it took us six months, maybe about a year to um recover from everything because there was a lot of trauma. But then after that, I started the show, and um, and it's been amazing. I get to hear so many different stories, so many different perspectives, so many people with different ideas. And that's when I've really realized just how much deep expertise there is in this lived experience. There's lots of therapists, lots of doctors, lots of really well-intentioned, meaning people, but people who live it every single day as parents, they really get it. And so that's what I would say. Um having that experience with my daughters when I really realized that.

SPEAKER_00 13:39

Well, speaking of that podcast, that was gonna be my next question, you know. Uh kind of tell us uh, you know, kind of what what uh inspired you or inspired you to do the title, Let's Plant House Let's Plant Houses. What does that title mean to you?

SPEAKER_01 13:55

Sure. So um so let's plant houses. So the exact title actually comes, well, I'll say this. So I'm gonna date myself a little bit. So I'm a Gen Xer, and um so the title actually comes from a Dirvana lyric. So um they talk about, you know, you can you can plant a house, you can build a tree. So it's it's a lyric from one of their songs. Um, the reason I liked it was not only because, you know, I liked the song a long time ago, um, but also because I always found it impossible. So like you can't plant houses. Um, but you know, as parents with kids with intellectual and developmental disabilities, you got to make the impossible possible every day because that's just that's just the reality of things. You have to make that possible for your kids. And so that was that's where the title came from.

SPEAKER_00 14:45

Well, through your podcast, you know, what what are some common family struggles that you see um loved ones with people with uh you know family members that have disabilities face?

SPEAKER_01 14:58

Yeah, absolutely. So the thing I often see is for um for younger families, it's navigating the school systems. And sometimes there's some complicated things, there's lots of wait lists. Um, you know, parents are told to just sit and wait, and you feel like you're not getting what your kid needs right now because time is, you know, you want to do that now once you know, um, with and and just finding the right supports along the way. Um, for parents that are older, like me, um, who have older kids, and and I say kids, but they're really young adults, it is that planning for adulthood. Um, not only are there a lot of steps to do things like if you need to do things like an SSI, if you need to do special needs trust, you know, things to plan for their future and secure that. But then again, there's in addition to that, rather, there's also housing, um, transportation, because a lot of our kids, they're not going to drive. And like here in Michigan, we are we're the car capital of, you know, the Midwest or the world. So um, transportation's not so great here. So it's trying to figure out all those things so that they can have access to their most meaningful life. And um, and so I'm seeing a lot of um ideas sprout up about that. So again, transportation, housing, and then just things that happen after they're out of the schools, because once you age out of the school system, um, a lot of the supports end. And so um, you know, we and and you want them to be able to continue to have um just to have a to have a great life, whatever that is.

SPEAKER_00 16:35

Well, how do you feel like honesty and storytelling help create change in communities and support systems?

SPEAKER_01 16:45

I think that honest conversations and storytelling help because not everybody shares the same lived experience. And so, you know, I I say that I do the show not only for the people who have the same lived experience or have a similar lived experience so they don't feel like they're alone, but it's actually also for the people who don't, so that they understand why families like ours need the resources that we do. We ask for, you know, the laws that we ask for, we ask for um, you know, the funding that we need or or the pay for caregivers or whatever it is because of what we're doing. And I think the individual stories really help to break that down for people who don't otherwise live this every day.

SPEAKER_00 17:31

Well, looking ahead, I how do you see the support systems for families with people with disabilities changing in the next five to ten years, let's say oh, how do I think it's gonna change? Yeah, how do you see it involve evolving?

SPEAKER_01 17:48

Well, I definitely see um there's a there's a good trend um happening with employment. So I'm seeing a lot of different organizations providing employment for people with disabilities. I mean, there have been organizations that have been doing a really good job of that for a long time, but there's a huge need because there's just so many more people that need that support. Um, definitely housing and just general independence for people because not every person that has IDD needs the level of support that like my daughter needs. Um, but there's, you know, they're coming with a lot more creative solutions too. So maybe they're semi-independent and they share a support worker. And um, you know, there's three people in an apartment, and there's three apartments and one caregiver because those folks can live pretty semi-independent. So I I like to see the creativity that's happening, and it's all about trying to um create these beautiful, meaningful lives for people.

SPEAKER_00 18:51

Well, tell us about any upcoming projects that you're working on that listeners need to be aware of.

SPEAKER_01 18:57

Um, well, I'm just gonna continue with Let's Plant Houses. So I really hope people will uh will listen to that because um that's actually probably gonna be my big focus at least through this year and through next year. Um, I want to tell as many stories as possible. So if you know anyone who wants to be a guest on the show, I'd love to have them on. Um, and again, please share it with as many people as possible because I think these stories are so important.

SPEAKER_00 19:22

Well, so people can keep up with everything that you're up to, though that's your contact info.

SPEAKER_01 19:28

So you can find me personally on LinkedIn. So Wendy Ernzen, please anytime, just um follow me there. You can also um catch Let's Plant Houses. We are on Apple and Spotify, as well as I have a website at www.letsplanthouses.com.

SPEAKER_00 19:48

All right, we'll close us out with some final thoughts, man. If that was something I forgot to talk about that you would like to touch on, or any final thoughts you have for the listeners.

SPEAKER_01 19:57

Um final thoughts for the listeners. Well, I would just say that um, you know, it's important to listen to as many different stories as you can, because again, we don't all share the same point of view, the same lived experience. And I think it's really important for um for that to build empathy. And um, we could use a lot, we could use a lot more empathy in this world right now. So that's what I would leave listeners with.

SPEAKER_00 20:26

All right, ladies and gentlemen. So for more information on Wendy's podcast, or if you are someone that you know would like to be a guest, visit Lesplanthouses.com and check out everything that the show is gonna be up to. And also visit www.curveball337.com to keep up with all things Living the Dream. Share the website and the show to everybody you know. Thank you for listening and supporting the show. And Wendy, thank you for all that you do for the disabled community and uh being an advocate. And thank you for joining me.

SPEAKER_01 21:02

Thank you so much for having me today here, Curtis. Appreciate it.

SPEAKER_00 21:06

For more information on the Living the Dream with Curveball podcast, visit www.curveball337.com. Until next time, keep living the dream.