STORY: Finding Joy in the Challenges of Caregiving with Wendy Ernzen

Hello Brave Friends! Welcome to today's story episode, #254. These are true stories from a moment in the life of a caregiving parent. We hear a crafted story, and then have a conversation with our guest that goes deeper into their experience.

In this episode of the Brave Together podcast, Wendy Ernzen shares her journey raising her daughter Nicola, who lives with autism and bipolar disorder. Wendy reflects on the challenges of navigating complex diagnoses, advocating for the right educational and support systems, and facing moments of crisis that required courage, compassion, and difficult decisions.

Through her story, Wendy explores the emotional realities of caregiving, the importance of finding community support, and the critical role of self-care for parents navigating long-term caregiving journeys. She speaks openly about the moments that pushed her family to seek new forms of help and how those experiences ultimately created new pathways toward stability and growth.

In the conversation that follows, hosts Jessica Patay and Susanna Peace Lovell discuss with Wendy the importance of compassion when interpreting our children’s behaviors, the need for stronger support systems for families, and how caregivers can find meaning, connection, and small moments of joy even in the most challenging seasons.

Wendy’s story is a powerful reminder that caregivers cannot do this work alone—and that community, honesty, and support are essential to sustaining the journey.

Find more about Wendy Ernzen here. 

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Find Susanna’s book, Your True Self is Enough here.

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Transcript

SPEAKER_02 0:00

Welcome to Brave Together Podcast, an empowering resource for the parents of children with disabilities, neurodivergence, and all unique needs.

SPEAKER_00 0:13

So, of course, so we leave there where they say two days. We know it's going to be a couple weeks. It actually turns into two months. And still every day we're doing the same thing that we were doing with Nick because that's all we can do to manage through this. And I'm on the phone every day. I made it my full-time job to call every single person that was part of this process, saying, okay, great, you've completed the step. What's the next step? What's the next step? What's the next step?

SPEAKER_01 0:38

Hello, Bravies. I'm your host for this episode, Susanna P. Slavelle, author, life coach, and advocate for disability families. I am joined by my wonderful co-host Jessica Pate, brave mom and founder of the nonprofit We Are Brave Together. On this story episode, we hear a true story from a moment in the life of a caregiving parent. Today's story comes from Wendy Ernssen, whose daughter, Nicola, lives with autism and bipolar disorder. In her story, Wendy shares the profound and complex journey of raising a child with significant support needs. She reflects on the challenges of navigating the education system, moments of crisis that forced difficult decisions, and the deep compassion required to understand behaviors that others may not see with the same lens. Wendy also speaks so honestly about the importance of caregiver support, the need for community, and the radical act of the compassion it takes to keep showing up for our children and ourselves through every stage of the journey. After Wendy shares her story, Jessica and I sit down with her to talk more about navigating crises, advocating for support systems, and finding meaning, connection, and even moments of joy along the caregiving path. A quick reminder to rate and review this podcast, share episodes with your friends, follow us on social media, and check out our episodes posted weekly on our We Are Brave Together YouTube channel. And now I will let Wendy take it from here. Enjoy.

SPEAKER_00 2:16

Picture this. You've just recovered from COVID and you're still so deeply exhausted, but you finally covered up one hour to take care of you. And then your phone starts buzzing with so many texts. Things like she's having a meltdown at the restaurant. I'm trying to get her into the car. We'll meet you at the house in 10 minutes. Can you be there? That was me four years ago this June. My daughter Nicola was with her caregiver so I could make that appointment. And the plan was really simple. She's going to go do some of her favorite things. She was going to lunch at a Coney Island. She's going to have a stop at five below for coloring books. And she was going to get to practice her everyday skills like ordering lunch and using her debit card. And it was just going to be for about an hour. And something that you may not know is that Nicola is diagnosed with level three autism and bipolar disorder. And what that means for her is that she needs 24-7 support with daily life. That could be things like cooking or showering, making safe decisions like even crossing the street. And when Nicola feels safe, she is joyful. She loves basketball and bowling. She loves Disney and Star Wars. She loves holidays of every kind. And she loves to introduce herself to everyone she meets and she'll say, Hi, I'm Nicola. What's your name? And we sometimes even call her the mayor. But when she feels overwhelmed or dysregulated, it can look very different. She may yell or swear, she may throw things, sometimes those things are small, and sometimes those things are big. And she may even threaten people who are around her. At the time of that appointment, our family had already been in crisis for months. For six months leading up to it, Nicholas's episodes had been escalating. So she'd been having bouts of aggression. It was just really difficult. For three months, we were navigating a major medication change, hoping that this would help with her episodes. For two months, under medical guidance, we were using an emergency medication to help bring her down. And we would do that while the rest of us would lock ourselves in our rooms until she could calm down. And a month earlier, Nicola had just finished high school and we were super excited for her. And she'd even started a new transition program, which would help her find a job. Now, weeks before, we'd all had COVID and we were super exhausted. And despite working closely with her care team, things were still not improving. So that day when I got all those texts, I rushed home and I relieved the caregiver and she left. Nicola and she was still so angry. And she looked at me and said very calmly, I'd like to hit you right now. My heart just broke. I knew that this wasn't Nicola's fault. I knew she was not choosing this. Yet we still didn't understand how to meet her needs in a way that actually worked for her and for us. And no matter how hard we tried, no one had answers. We also knew the system pretty well at this point. My husband had served on an autism nonprofit board for years. I'd worked alongside families navigating these same systems. Our family had been working with our community health provider for 15 months. We knew that we were in a crisis. And within crisis, the only door here in our state that reliably opens is the emergency room. But we also knew that that door doesn't often work. So we tried everything else we could first. We've been working with our case manager, like I said, for over a year with no housing options for Nick. The County Crisis Center turned us away after Nicola became overwhelmed and staff were injured while they're trying to restrain her. And we were told, you do need to take her to the yard, that's your only option. So eventually, with police officers training crisis intervention, they helped us de-escalate the situation. Nicola did agree to go to the emergency room. At that time, only four facilities in our entire state would accept someone with autism as a primary diagnosis. And that was only if a bed was open. So we spent six nights there, very little changed, and no beds opened. And we were discharged because there was nowhere else for her to go. But because we had been in crisis, she'd had an incident that had happened in the community, her case was escalated. But it still took two more months to secure housing. And she required that with 24-7 support. And the only reason why that finally happened is because we had constant vigilance. We were working on this every single day to make sure that she could find that placement. And every day was a struggle for our family, especially Nick. But she did eventually receive her housing placement and we were super grateful. And that's why stories like ours matter. When families like mine, when our stories aren't visible, people don't understand why we need help. They don't understand why 24-7 support is necessary. And they don't see why, quote unquote, trying harder simply isn't an option. So I believe we need to tell more stories more often because when people truly see what families live with every day like ours, that's when real change becomes possible.

SPEAKER_02 7:02

Wendy, welcome to Brave Together Podcast. We're so happy that you submitted a story. We love, love, love having moms and dads and siblings share their stories on the podcast.

SPEAKER_00 7:14

I'm so excited to be here today. So thank you both for having me here.

SPEAKER_01 7:17

I I feel like we're, you know, the three of us are all one in the same. I just, I love, I love story episodes for me are some of my favorites because honestly, no matter, you know, where you're coming from, what circumstance, situation, where you are right now, and whatever season is true and real for you right now, um, I feel always, always, always just so less alone. I always feel like I'm meeting a new friend, Wendy. So hello, friend.

SPEAKER_00 7:47

Well, hello. And I agree. It's so good to not feel like you're alone. And because we're not. And we actually are all going through this human existence with kids, some with needs, um, some families that need more support, and we are here for each other. And then you can kind of normalize some of the stuff we go through. That you know, this it's it's okay that it's not exactly what you expected, and it doesn't mean it can't be meaningful and joyful.

SPEAKER_01 8:12

That's great. That is that is that's it.

SPEAKER_02 8:16

We are in sync. We are definitely in sync. I love it. I love it. Well, this is a great way to start. And um Wendy, why don't you share with our listeners a little bit of your personal story and what led you to writing your story?

SPEAKER_00 8:31

So um I'm married happily. I've been married for 24 years and I've been with my husband for 26. His name is Bill, and he's awesome. Um and I and I I like to start with that because I don't know how much you guys know about the with the special needs community. There's a lot of people that get divorced because it's really hard. You know, you're making right, you're making life change. You may not be making life and death decisions every day, but you're making life-changing decisions every day. And you have to be on the same page all the time, and that uh either keeps you together and brings you closer, or it doesn't. And so so I'm very happy that we've been fortunate enough that we have made that through. And and um we have two kids we have Nicola and Francis, and Nick goes by or Nicola goes by Nick, and uh they're 23 and 20, respectively. Frances is a sophomore in college, and they are doing some really incredible things, and Nick is also doing some incredible things. But to tell you a little bit more about her, so Nick happens to have autism and bipolar, and what that means for her is that she needs 24-7 support. So that could be things like uh cooking, safety. Um, she may need some coaching, getting dressed. She definitely is coaching when she's showering. God love her. Um, but she's her style, you're like, she needs some guidance here and there. So, but she needs a she needs that constant reassurance and um and support. And um, and she's amazing because she has like uh cool hobbies and um interests. Like she loves Disney and with Disney, she likes a lot of the bad characters and the good characters. So um she's a big fan, she's a big fan of villains, let me tell you. And then of course she likes sports, like she likes basketball, and she likes to play um, she likes swimming and um she loves to go to the movies, and she certainly loves going to restaurants.

SPEAKER_02 10:19

And that's what we talk about on this podcast. We talk about extreme caregiving, we talk about, you know, just the hypervigilance and being on, on, on. And your story is absolutely in line with that, Wendy.

SPEAKER_00 10:32

Right. And then it's like, how do you feel? I know it sounds cliche, but how do you feel your own cup? Because otherwise you're gonna always be operating from a place of depletion, right? So it's like like I have this thing that I do in the morning and I call it I don't know, I I guess they call it like my foundation to blocks or whatever, but it's basically I've got a list of 15 things that I could do. Doesn't mean I do all those things, but I could do those things. And so they're just I know they're just things that make me feel grounded and um and ready to face not raised, but ready to get started with the day, right? And so because I actually don't treat it as this is what I do every single day, I think about instead of a to-do list, it's my get-to-do list. So it's like those things I get to do. Like, like, for example, I get to go to the gym because my whole body is working and functional. So I'm able to walk to the gym and use all the equipment and um and and I try to frame it that way. But the point is though is I still try to set that time aside for me. And I feel like as caregivers, we just like we're so we want our kids to have everything, right? And so we don't want to miss an opportunity. And I feel like that's where a lot of the hyper religious, and then of course, Jessica, with you, it's safety. But like you just, you just don't want to, you don't want them to miss out. You want them to have everything because you want them to have this beautiful life, whatever that is.

SPEAKER_02 11:53

I'm just curious, like, how did you come to the place of, you know what, it's okay for me to take a few minutes or an hour to take care of myself, whether it's physical, mental, emotional, you know, relational, you know, making sure you have time with your wonderful husband, Bill, or with life-giving friends. Like, how did you come to the place of like, oh, this is okay for me to do or this is necessary for me to do without feeling the guilt? Because we hear, Suzanne and I hear all the time, how guilty moms feel if they step away from caretaking to take care of their own mental health, which is why our organization exists is to give people permission and tools to take care of their mental health.

SPEAKER_00 12:32

I'm gonna get real with you guys. I waited till I had a personal crisis. And so then my my body told me what I needed to be doing. That's why I had a panic attack, thought I had a heart attack. That was the first time. And then Nicola, which we're not I I know we'll talk about that story, but Nicola also then she went through a period of crisis, which then had my second like basically like I'm sure that for a long time my body had been throwing pebbles at me. But these were bricks. So I waited till there were bricks being thrown at me, and that's when I actually started to listen. And I'm very lucky though, because it wasn't something I couldn't come back from, but now I honor it. And my I my boundaries are very hard and fast.

SPEAKER_01 13:18

No, but tell us more about Nicola and more about Nick. So you were talking about, you know, how she just loves to share her ideas and she's so sure of what works for her. And um, and tell us sort of the journey with her to where she is now today.

SPEAKER_00 13:39

She was not an easy baby, so she didn't like to sleep, she wouldn't nap. She I was a first-time mom. So I didn't know what I didn't know. She had lots of ear infections, um, so then she had lots of courses of antibiotics, and then she had a lot of delays, still on time, but always like under the wire. So like walking at 15 months, you know, first words somewhere between one and two, things like that.

SPEAKER_02 14:10

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SPEAKER_00 16:03

Welcome back, brave friends. And we were fortunate enough at the time that she was in a preschool. Like probably we were starting Montessor. You could start at like 18 or 24, 24 months, maybe that's what it was. And at two and a half months, her teachers let or she was two and a half years, and she's like, I'm just gonna tell you, like, this isn't, she's being very nice and gentle about it, but she like this isn't typical development. You might want to talk to your pediatrician about it. I'm like, I don't know what you're talking about, but whatever. Talk to the pediatrician. She's like, I guess. She's like, here's a recommendation. So I went to see a developmental pediatrician. And she's like, Yep, your daughter has what's called a global motor delay. It just meant that she was delayed in a ton, you know, mo a lot of motor areas. And then um, and I'm like, oh, well, what does that mean? And she's like, Well, I I don't know. It could mean lots of things. And she's like, now you need to start the journey. And I didn't know what any of that meant, but you know, now you see neurologists, you see a psychologist, you see PT, you see speech, you see. So we started that. And um, and so for her here in Michigan, her initial diagnosis was PDD NOS, which basically means they didn't really know, but it's pervasive developmental disorder, otherwise not specified because they just don't know. But basically now it's autism. I mean, we know that now. So um, but we didn't know that at the time. So we continued to see all these specialists, but then we started speech. We started speech in OT and we did it in the home because insurance didn't cover it. So, and we did have a rare specialized preschool, so we did that. Yeah, so we just continued that process, and then somewhere around seven, she finally got her formal diagnosis. Even though now you would say Nicola has profound autism, so it's not like it's like you know, it was it pretty obvious, and so then I got kind of bumpy. So, you know, because at this time I'm managing my career and being her mom, and my husband traveled, so we made the decision that I would stay home because she needed lots of therapies, lots of care. And we'd also had a second child. We're like, well, this might work out great because I'm home with both kids. So we do that for a while, and so then we actually were in the schools and they just didn't have enough resources, and I'm being very generous, but we went through an um one-year-long IEP process. I think we spent about 12 hours. We had to hire an advocate um trying to figure out what we could get out of the schools, and it turned out we we couldn't get what we needed for Nick out of the schools, and she's being taught in a closet with a para pro. So that's where we were at this point. And I'm and I'm picking her up from school like every, you know, this is part of the reason why I'm not working. You know, I'm picking her up from school like every third day, and you know, because there's all these disruptions with Nicola on her behavior. And this is let's be honest, guys, this is not Nicola, this is not a Nicola issue. Okay, we know that this Nicola is trying to communicate, but we know a lot more information now. This is also myself, this was 20 years ago, so or 15 years ago. So by that time, we end up bouncing around school. So we we were fortunate enough they're able to move. We go to a new district. Um, she's in each district a couple years, and then they're like, nope, nope. And so she kept being moved because there was no how do I explain this? So basically, it's almost like we got went from a general ed to more specialties to specialty specialties. It's just none of these folks had an autism room. Right. So she'd be like in a resource room. She'd be in an um IE room. I'm gonna say this right, is it CI? Trying to remember all the ones, but you know, they're different rooms for lots of different kids with different IDD, not necessarily just autism. So finally, around sixth grade, we get to her uh eighth school, and now she's in an autism center. It was a gift, but she was there until she graduated from high school. She had a magical team. Um, they got her. I wish she had been there the whole time. And we didn't what we didn't realize as parents is we needed it too.

SPEAKER_01 19:49

Yeah.

SPEAKER_00 19:49

Because we were doing so much of this on their on their own. And so I have um I have a podcast, and the reason I mention this is that a lot of the parents that come on my show who talk about having been figured out like really good support when their kids were little because they ended up finding this like great group of parents and maybe some teachers and other people when their kids are really young and they go through the whole school. So then they got like it's not like perfect, but they've got a solid group of support and we didn't have that. And so finally we got that when she was in sixth grade, it was a blessing. So um, she stayed there again until she was a senior in high school. She played basketball, like on their unified team, which is for kids with needs. Um she she she did some cool things with like oh gosh, I forget what they called them, but they would have like students who were from General I that would like like her buddy system, and she had one of she had some folks that would help with that. And you know, she learned some skills for work to get her prepared to go to transitional program after. I don't know if you guys have transitional programs for your cancer. Okay, yeah, so here you can go to school until you're 26. Yeah, wait no week, no, what most of it's 21, right? Most states are 201 or 22. Okay, yeah, here in Michigan, you can do till you're 26. Susanna, mind blown. It's a blessing. That's why when they they said to us, they said you need to make the decision. Is she going to graduate? Like, are you going to pursue uh graduate certific certificate, or do you want to give certificate completion? And we weren't sure. It was clear to us by the time she was a freshman that that was the road to go for her. But we were like, wow, that gives her so much more support for a longer period of time.

SPEAKER_01 21:23

Yes, yes.

SPEAKER_00 21:25

Yeah. And so um but the cliff still exists, my friends. The cliff still exists at 26. So I will tell you that. It's it's really just kind of kicking the can a little bit. So but you get a little more time for your kid to settle into you know before before it's the support's out or support's gone. So we did that. And so then I would take you to our story.

SPEAKER_02 21:48

Yeah.

SPEAKER_00 21:50

So Nick had always had, you know, it's part of her, I think it's really part of her bipolar, but we don't know exactly what it is. But she would have times where she just needed a bit more management. More supporter, anxiety gets higher. And when her anxiety gets higher, like when she's feeling unregulated, we'll say, um, it's because she's feeling really overwhelmed. And then she might start to swear. And then she might start to yell and throw things and break things. And so what had happened was I think part of it was also transitioning from her high school program. So this wonderful program she'd been in for six years, and she knew that. And she and we were still done like a we're still doing this large transition with the new program, right? The program she can go until she's 26. So it's not like we just said, hey, you're going there. But we're doing this for like six weeks or two months with the both sets of teachers. But I think Nick knew it was coming. Yeah. And at the same time, being that age, I think she needed a different medication because sometimes that happens. And so over a six-month period, it was um, it just her episodes got more intense and they started to escalate. And she'd already been on, I think she was on three prescriptions at that time. And so the answer was to give her Atavan as a rescue man, yeah. But then it's on a daily basis, like this is where we get to. And so now, because she's at this point, she's breaking, throwing things every day. We're barricading ourselves for two hours, or other daughters barricading themselves for two hours till Nicola can calm down. And could you give her the Atavan and then you let her run its course because that's all you can do. So that's so then we're like, okay, well, we can make it through this. It's gonna be okay. Because I don't know about you guys, but you're kind of like a frog in boiling water, right? So, like, it's just like a little bit and a little bit more and a little bit more, and then all of a sudden you're like, wow, what are we doing? Like, what is happening? I've got like noise canceling headphones, I've got my dog in here, and my husband next to me with his noise canceling headphones. We're waiting for our kid to basically fall asleep because of the medication we just gave them. So we do this, and then we all get COVID. What happens is then your very flimsy infrastructure system that you set up is now completely gone, right? You can't have any caregivers, you have no respite, you have no support. So then I got it like last. So my husband didn't get it, but the three of us, the rest of the two kids and me, we all got it. And so I was the last one to get it. And so I needed to go see my doctor one day, and I was fortunate enough because Nick Lo at this point had been like had had it like four or five weeks prior. So we talked to our caregiver and she's like, Yep, I can come take Nick for like one hour, so you can go to the doctor. I said, Great. And we took her, she was taking her favorite place. Nick loves to go to the restaurant. So Coney Island here in Michigan is like her favorite thing, and she's gonna go to Five Below because she loves to get stuffed animals and coloring books. And she and that was gonna she could use her skills so she could order at the restaurant using life skills and also using her debit card. And she got to the restaurant and she went behind the counter and started throwing dishes and glasses and shattering things and scaring everybody who's in the place. And so the owner comes over to our caregiver and he's like, Listen, he's like, You need to get her out of here, or I'm gonna have to call the police. So then my caregiver's frantically texting me, and she's like, You got to meet me, you gotta leave. I know you're waiting for your doctor's appointment. Because I mean, I think I've been gone maybe 15 minutes at this point.

SPEAKER_03 25:03

No.

SPEAKER_00 25:04

And I said, Okay, so I leave my doctor's appointment, of course. I come home, I relieve my caregiver, thank her profusely, pay her. She leaves. And I turn to Nick, and Nick says, I want to hit you right now. And as a mom, and even thinking about it now, because it just makes me get so teared up, like, right, this is her unsupported. That's what's happening here. And I was so frustrated because at this point, not only had we had the six-month escalation, we've been trying for 15 months to organize her housing placement with our local community health provider, and it got nowhere. And unfortunately, we knew too much information because we'd also, my husband was on the board like of one of these large organizations here in the state of Michigan. So we'd heard about what happens when people go to the ER, to the emergency room, but that's the gateway to mental health here in Michigan. You have to go through the emergency room to get help. So we've kind of been avoiding that step, but now it's built into the community. And we're like, now what's it gonna take? Is Nick gonna get hurt? One of us is gonna get hurt, is our caregiver gonna get hurt? Somebody in the community, you know, somebody when Nick's out there, and like, we can't do it. We can't do this to us. There was a few things we did. We started with our, and I I think I mentioned this to you guys. We started with um, there's like a crisis center here in the county. So we started there and um we started going through their process, and apparently it was too slow for Nick. And um, she wanted to leave and she was done. And and two orderlies came out to stop her, and Nicola doesn't want to be touched, and they tried to subdue her. So then she lashed out. They brought two more, and then two orderlies ended up getting injured. So then they said, I'm sorry, you need to leave. You need to go find a different emergency room. So we said, Okay, so that was on a Saturday, because the Saturday, this is the same day that the incident happened at the cone at the at the restaurant. We were immediately took her there. We said, Okay, well, I guess now we need to go to like an official hospital ER and go through the process because we're trying to avoid that, we're trying to make it a little easier on her. So the morning we decided because we had to make arrangements. We have our other daughter, we have work, so we make arrangements that we because we know how long we're gonna be there. So it's Tuesday morning, I think it was. And how old is Nick at this point? At this point, Nick's 19. She's 19, and she had just completed school. And then we all had just hit COVID. So, you know, Nick's still like, I mean, she's not sick or anything because I mean it had been like five weeks, but she's still tired, you know, and just like anybody, you're gonna be grumpy after that. Well, she takes Grumpy to a different level when she's also not being supported in the ways that she needs to be. So we're like, Well, we need to take you to a doctor. She's like, Oh no, no, no. I mean, she in her own words, she's like, I remember what happened on Saturday, so I'm not going. So she starts breaking everything and shattering things, and and then she eventually retreats to her room. Bill and I are like, gosh, I don't know what we're gonna do. Cause I'm like, because she's also bigger than me at this point, because she's five, four, I'm five foot. She weighs 170 pounds. I think this time I don't. Um, and we know how Nick feels about being touched and being forced to do something she doesn't want to do. We don't want to do that to her. So, like, what do we do? So at that time, I call our local police department on their non-emergency line. So I'm saying this in case anybody goes through this process. You call their non-emergency line, and um, and I knew they had this new program just because of the work Bill and I had been doing in the community. And they had a mental health professional was now helping the police department for things just like this. And I said, Hey, is this person on staff? What do you guys recommend? I obviously don't, you know, want to put anybody in danger, but what's the steps? So they said, Well, you know what happened? We happen to have two of the police officers on site that have been crisis intervention trained, so it's called CIT. And they said, Let me talk to the chief and we'll we'll send them over. I said, Great. So they sent them over. Nick wants nothing to do with them. So she's in her room and she's got my daughter loves stuffed animals. That is her thing. So she's got probably a hundred stuffed animals all around her on her floor, all looking at her. But she's got she's got them all situated the way she wants. And she's not talking to them, like, hey, Nick, you know, trying to have a conversation with her. So then the one police officer starts talking about her Disney movies. He's like, hey, this or or whatever movies, because he's like, that's from Shrek, which I know it's not Disney, it's Pixar. And then he's like, This character's from um, you know, this is Sully from Monsters Inc. And he's going on, he goes, My daughter loves these, and blah, blah. So they build this rapport with Nick over 45 minutes. And finally she agrees to go and she's excited, and they give her like a little like badge and like whatever. And it was great. So I will tell you, like, you never hear those good stories. I want you to hear the good story. It was a great story. And we are so so grateful. And I even went on their podcast at one point, tell my story because this program now has been so successful, they've now rolled it out through our entire county. So it's just it's magic. So, anyway, so we get to the hospital, they help us, they escort her in so she go right into a room. That's all wonderful. And Bill and I were so grateful. But then we were there for six nights and very little changed. And very similarly, just like when we go to any kind of school meeting, I can't think of the term when they not admit you, the opposite, they want you to leave the hospital. I forget the term. Discharge. Discharge. So we're in the discharge meeting. And so Bill and I, nothing has changed. We're gonna go right back to where we were. This is why we're here.

SPEAKER_03 30:18

Yeah.

SPEAKER_00 30:19

What's next? And we've got 10 people sitting around us, just like we're an IEP, right? So we've got the doctor and the psychiatrist. And by the way, Nick's psychiatric care while she was in the ER was with an iPad. I don't know how your kids are about iPads, but that didn't really work at all. So that person I think is on an iPad, whatever. So we have all these people in this room, including community mental health now. Now they're on board because they're like, oh, you guys in an instant and you're at the air. I guess we're gonna now come to your meetings. So that's when it was so Bill and I pushed and we're like, well, she cannot leave here until we have something new. We need something different. And so they finally escalated our case. Okay. We said that's that's interesting. So what does that mean? Because that's all new information for us. Like, while that means that she's going to get on a path to having housing sooner. And you know, we've seen it happen as as quickly as two days, and we're like, okay. So, of course, so we leave there where they say two days. We know it's going to be a couple of weeks. It actually turns into two months. And still, every day we're doing the same thing that we were doing with Nick because that's all we can do to manage through this. And I'm on the phone every day. I made it my full-time job to call every single person that was part of this process saying, Okay, great, you've completed the step. What's the next step? What's the next step? What's the next step? And that is, you know, the only reason why she got her placement. And now she is um on a campus. She's in Ann Arbor mission, which by the way is a beautiful city. She lives on an autism campus. She is not, you know, sequestered or anything. She's not institutionalized. I mean, she goes to she goes to her transition program. She can still go there until she's 26. There's a hot there's a library like around the corner. I can have Whole Foods because she's got her own apartment. So I can have Whole Foods delivered to her door if I want to. We get to go, and the thing that for Bill and I we say this we get to be her parents. So before I was her everything, right? I was her landlord, I was her transportation, I was her enforcer. I was telling her how to live her life. Now she can choose because they can't make her do things. She's an adult and they treat her like an adult. And um, and she has the responsibilities of an adult. Um, it's so hard to do that as a parent to make that transition when they're adults in your house. I I can't tell you the difference with her. Like it's so wonderful. And she tells us that she's happy. So that's good too. Because she, even though she has profound allergies, she's verbal, she's very verbal. Um, which is why she can swear like on cue um when she wants to. But that's a whole nother story. But she's living on this campus now, and yeah, she's we're just we're just so grateful. She started Special Olympics. Well, she's she started it last year, but now it's official. They're doing some um new things with that this year, which I love because I think Special Olympics is like this lifelong gift. Because as long as you're able, you can play till you're 90.

SPEAKER_02 33:01

I'm sure we're both chomping at the bit, Susanna, right? There's so much to comment on. But you know what we don't hear enough when you talk about when when we've had guests talk about placement or we just talk about it in general, is I now get to just be Nick's mom. I like when I think about you know Ryan someday being placed outside of the home, I get to be Ryan's parent. That's right, his parent.

SPEAKER_00 33:28

Yeah. You get to go to lunch with him, you get to like shop with him, you get to like do all these cool things with him because you get to do that, and they love that, and you get to like take into fun things, you know.

SPEAKER_02 33:41

Yeah, and I would actually have the energy to do those things. Whereas now I'm still like getting through the weekend versus like, oh, let's think of this fun outing. And I know there are a lot of moms who are really great at doing outings and being super fun with their kids or adult kids, but I'm not one of those. And admittedly, I'm so honest, but like I want to do, I look forward to that time where my first of all, Jessica, I want you to not say it like that.

SPEAKER_00 34:10

You should not be guilting yourself because you do you do things or you don't do things. It is okay to not do those things, it is okay to actually choose yourself. It is okay to like do something different. I refuse. I refuse to let us ladies feel guilty because we did we are doing so much. Um something I was thinking about is that we do so much invisible labor. Yes, and and you know, if you're too damn tired to entertain, I think that's okay. Okay, so thank you.

SPEAKER_01 34:40

I receive, I receive. We need this reminder, and I I think it matters the most when it comes from one of us, this reminder, because you know, I have friends who are mothers who aren't extreme caregivers, you know. I mean, motherhood is still motherhood, right? Obviously, yeah, 100%. Jessica, you have two other children. I only have one child. Um, you also have Francis, so that's a different experience. But I just really feel like this needs to become our our mission, you know, in this life to just be like, yeah, I'm not the creative coming up with outings sort of thing. And, you know, look at all of the reasons why, because you are creating, you've created this beautiful community of how many moms do we have across the globe now? 3,000? And we are over 4,000. Over 4,000. See, just you know, the the support there. It's it's yeah, we have listen, we have our gifts, we have our talents, and I think it's really important, uh, like you mentioned before, Wendy, to like set boundaries and to know what's good for us is good for the universe, period. Seriously. And I say that to Arizona all the time because you know, that child with no filter is like, I need to take a nap. You know, my body can't go, right? Right. And she's gonna take that nap so cozily, so cozily without guilt, you know what I mean? Wakes up from said nap. Where's dinner? Do you know what I'm saying?

SPEAKER_00 36:16

She's like, I'm clearly hungry. I know I am, and so that's what I would like right now.

SPEAKER_01 36:21

I worked up an appetite with my nap. And then she told she told me this morning, she's like, mommy, I decided after school every day I'm gonna take a nap. And I was like, fantastic. That sounds phenomenal. Um, and then that gives me a little, you know, 45-minute break, too. Right. So this is all working out for all of us.

SPEAKER_00 36:43

Well, but I love what you're saying though, because it's a lot like you're saying, Arizona's teaching us a lesson.

SPEAKER_01 36:48

Yes, right.

SPEAKER_00 36:49

Arizona's saying, my body feels this way. I'm actually gonna listen to my body instead of my head. Because my body right now is telling me in this moment, this is what I need. Right. And I realize honestly, it is so hard when you're constantly having to be hyper-vigilant and planning ahead and all the things you're describing to really tune into what your body needs. And I couldn't. It was really, I'm just gonna be honest, with my daughter in the house, it was almost impossible. And it's not her fault. I want to be very clear about this. Yeah, it's not a mixed thing, it's just it's a symptom of just being a special needs mom or whatever we want to call it, but you know, because the needs are so constant and they're immediate.

SPEAKER_01 37:32

You know, even while you were sharing a lot of your story, which by the way, the beginning sounds exactly like my beginning with Arizona. Um, but I I just felt like you were sharing your story, and I realized that I was holding my breath the entire time because I feel like my body keeps the score. I mean, I was feeling exactly what you were feeling in those moments. And I, you know, I'm we I'm sort of at a cusp on the horizon with next program for Arizona, and we'll see how that goes. And we I love that we have a plan starting in September. She graduates from high school this this year. So congratulations, mom. Yeah, congratulations to me. Seriously, yes, you got her there. Oh, oh, uh 100%. I I definitely receive that. I mean, yes, yes, thank you.

SPEAKER_02 38:30

Um can I say something? Can I ask you something, Wendy? Completely shifting gears, because I feel like, and maybe this is just because it I think about my own journey too, but like the way you've talked about Nick and her behaviors is with so much compassion and love, like she's you know, unregulated. She was feeling unsupported, like going through the COVID era where like our kids were not getting the support that they needed, you know, by being in the world.

SPEAKER_00 39:01

The virtual world did not work for Nick.

SPEAKER_02 39:03

No, it's not COVID. But like, what would you say to a mom early in her journey who's experiencing extreme behaviors with their child? Because I know for me, when I reflect back, and I'm in a better place, different place now, but like it activated my fear. And so I felt more irritable on a regular basis and less compassionate with the behaviors. And I think it's just only over time that that has shifted. And I just wish somebody could have said something to me earlier in my journey. I think it's really real to be afraid. Where is this going? It's also like, this is not the motherhood I signed up for. So it pushes the sad buttons, it pushes the grief buttons. And we may not be able to look at the behaviors and look at our child with as much compassion and high-level perspective. What would you say to moms who are earlier in their journey and are dealing with these extreme behaviors?

SPEAKER_00 40:08

So I'm going to take it even a different step and I will come back to that. What I wish happened is that when you receive a diagnosis, that automatically support is offered to you. Because that is not happening, that does not happen. I do think I see it when kids are diagnosed with cancer or something really serious. They'll offer that to the family and the siblings, but they don't offer that. At least I didn't experience that. I think that they should. I'm not saying you're going to take it, but then you know it's there. Yeah. And so I think that's number one thing. You receive a diagnosis like that, you don't know, you have uncertainty, you're going to have grief. We all had grief, right? You, what world, what what life did you think your kid was going to live? You who knows? I don't know what that is, but it's down, it's definitely going to be different than what you thought. And so I would say that number one. So then I would say to that mom, if you're feeling overwhelmed and you don't have a community, that's where you start. Go go talk to somebody that has an objective interest. They have no, they have no, they right, they don't care if your kid is, you know, they don't care about any of this. If they just care about supporting you, you need to be supported. And that's what I would say from the get-go. I never did that. I and and I I will tell you, part of the problem is in my family, if you got mental health, there's something wrong with you. That's how I was brought up. And um, and I lost my father to suicide because of that. And I still didn't recognize it though, when I had all the stuff happen with Nick. And so that's the thing I always say is like, and I have now had support. So, like when Nicola, you know, when I had my panic attacks, that's when I started seeing a therapist. And then even after she moved out, I received PTSD therapy. And I'm grateful every day because it also allows me to be compassionate with Nick, right? I'm not angry with her, I'm not dissociating from her anymore. I understand that a lot of this is her just trying to communicate.

SPEAKER_02 41:57

Right.

SPEAKER_00 41:57

And so that's probably the things that I would recommend.

SPEAKER_02 42:00

I love all of that. I love all of that. I I say, wouldn't it be it is a radical act of compassion if the nurses, doctors, therapists, teachers, aides said to parents, do you have community? Right.

SPEAKER_00 42:16

And you have to say, Do you need mental health? Because then people like something wrong with me. But yeah, the community work. Who's who's in your corner? You know, who are you bouncing ideas off every day so you don't feel like you're the only one in the whole world going through this, even though you know you're not?

SPEAKER_02 42:30

Yeah, I think this should be a part of the annual physical for all human beings. All human beings.

SPEAKER_00 42:39

Do you have community? I was asked in my physical when we were going through all this with Nicola during the crisis. They asked me, Do you feel safe in your own home? And I said, No. And they didn't do anything about it. They just asked the question, checked the box. They said, Is it your husband? I said, No, it's my daughter. And I told them exactly what's happening, like, oh, that sounds terrible. And I think they might have offered me medication, but that was it. Okay. Um really mother's pain. And that wasn't that long ago, guys. Now I have a different PCP now. Yeah. And she's awesome. So um, but yeah.

SPEAKER_01 43:16

You know, I love what you have taught us today. You know, the reframe, the perspective. That is what I'm gleaning from this conversation. It's, you know, I struggled with postpartum anxiety, depression, and then after the diagnosis, a different type of anxiety and depression. And in my family, we didn't even know about the word depression or anxiety growing up. It was just like, hey, well, then work harder, you know. But I like this reframe of no, there's nothing wrong with me. And I do have some unmet needs. No, just like you like just like you were talking about Nicola, she wasn't supported. Right, she just has support and plate for me as well. And that's what it is.

SPEAKER_00 44:05

That's right. We need we need a village. I know it sounds cheesy and whatever, but we do absolutely.

SPEAKER_01 44:11

No, no, no, no, no. I would not be sitting here right now had it not been for reaching out, finding community before I found We Are Brave Together in 2020, which is what I wish I had since you know Arizona was diagnosed 17 and a half years ago, right?

SPEAKER_00 44:28

Think about this. So since you've had that, how different is your life? Oh, Wendy.

SPEAKER_01 44:35

I am the happiest I have ever been in my life. And I'm, you know, if you look at me, I am divorced.

SPEAKER_00 44:42

Oh, you're glowing too, girl. You're glowing.

SPEAKER_01 44:45

That might also be the vitamin D from playing tennis earlier. I just feel like everything is okay. Like everything is okay. I have my people and I I know who to call and I know how to support myself, and I still have these moments where I'm like literally do I need to call call another cardiologist just to make sure my heart isn't failing me.

SPEAKER_00 45:12

Your heart is not failing you.

SPEAKER_02 45:14

Well, we're at the time at the end of our time together, Wendy, but I don't really want to leave. Is there anything? Anything else? No, genuinely. Like we love, we live for this, Susanna and I. Like this is I don't know, we're so lucky we get to do this.

SPEAKER_01 45:30

So yeah, I think we can also come on Let's Plant Houses.

SPEAKER_00 45:36

I would love to have you guys on Let's Plant Houses because I just love telling the stories too. And um mine's a little bit different because I want people to they get to share their their stories and they get to tell their moments and they also get to share their advice, and it's still pretty similar, but uh it's a lot of fun. And I wanted to do it uh, you know, once I realized part of the reason I think that we were even in our crisis that I talked about was because our stories aren't being told. Because, you know, and so now what I want to do with that show is it's not only inspire people and so people don't feel like they're alone who share our lived experiences, but for those who don't, I want them to understand why we ask for what we do. Because how are you gonna understand why we need the resources, why we need the infrastructure to operate differently, why we need the housing, why we need all these things for our kids. Well, when you actually hear the stories and you'll understand.

SPEAKER_02 46:27

Right. When where can everybody find you and find your podcast?

SPEAKER_00 46:32

So you can find me. Um I'm on Apple and Spotify. It's called Let's Plant Houses. Yeah, and and again, if anybody wants me on the show, just go to my website www.letsplanthouses.com and you can um just email me. And you can also find me me personally on LinkedIn. I don't care how people find me, just find me. I don't care. There's no formal whatever. I want to just like you guys, I just want to keep telling the stories and um keep celebrating people.

SPEAKER_02 47:02

So well, thank you so much. This has been such a delight, Wendy. Thank you.

SPEAKER_00 47:08

It's been my honor. Thank you for having me today.

SPEAKER_02 47:15

Thanks so much for listening today. Do us a favor and leave us a review and a rating so that this podcast can get into the ears and the hearts of more and more moms. Did you know that Brave Together Podcast is an extension of our nonprofit organization, We Are Brave Together? We Are Brave Together serves an international community of caregiving moms, offering support groups that are virtual and in-person educational resources and low-cost weekend retreats. And we have published our first anthology of caregiving stories entitled Becoming Brave Together: Heroic Extraordinary Caregiving Stories from Mothers Hidden in Plain Sight. It will encourage and validate every parent caregiver. To join us today, go to wearebravetogether.org. Our support and sisterhood awaits you. Brave Together Podcast is for entertainment and education purposes only. It's not a substitute for professional care and should not be relied on for medical or mental health advice. The use of any content on our podcast, links, show notes, or on our website is to be done at your own personal risk. Please seek out a professional to assess your own medical or mental health concerns because we are all beautifully complex, and the content of this podcast is for a broad audience.