Part 3 What I Learned as an Autism Parent About Respite Care, Staff Culture and Letting Go of Fear

This episode focuses on lessons learned from building and running a special needs program, emphasizing that strong outcomes depend less on daily tasks and more on culture, trust, and communication. Mike Carr and Johnna Oppermann discuss how fear often drives parenting decisions and can unintentionally lead to over-control, enabling behaviors, or breakdowns in communication between parents and staff. They highlight the importance of creating a supportive environment where staff feel valued, since staff well-being directly impacts the quality of care provided. The conversation stresses the need to celebrate progress regularly, address concerns quickly using direct communication rather than texts or emails, and avoid allowing frustrations to build up. They also explore how modern care settings require collaboration rather than “us vs. them” dynamics, and how individuals in programs must be supported through appropriate challenge, real-world exposure, and individualized expectations. Ultimately, the episode underscores that sustainable programs are built on trust, transparency, and strong leadership, where parents and professionals work together while allowing trained leaders to guide day-to-day operations for long-term success. 

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Transcript

Mike Carr (00:05):

Welcome back again everyone for part three of our episodes with Johnna Oppermann, who is a longtime special needs consultant who's been involved with many nonprofits over two decades running communities, working with parents with all types of special complex needs from low functioning, almost Asperger's type, to very low functioning, high support needs like our son and everybody in between. So this final episode, we're going to let Johna talk about some of the learnings that I had to go through as a parent and as a dad, not really understanding how important certain things were or how to do other things the right way versus the way that just upset everybody. So Jonna, please fire away.

Johnna Oppermann (00:49):

Well, first I just want to say this is not the first time. We're very honest with each other. And so I don't think any of these things are going to be surprising to you because we had the gloves on and we duked it out when necessary. I think probably the first thing that comes to mind is when I first started working with you guys and you asked me to help with a bunch of different things. And so I put together a proposal and it had culture realignment and culture like solidifying the foundation and kind of what that meant. And you brushed it off and said, "It's one of my favorite things that you've ever done because now all you do is preach about culture." Is you said, "Take that off, Haden and I can handle the culture." And I was like, "Oh boy, this is how I know you need help with culture because you don't even know what it is.

(01:33):

" And so I think that was probably the biggest thing that I remember right out of the gate. And in the beginning you were really chomping at the bit that you wanted to see action, action, action, action, action. But some of these soft skills are what laid the foundation of a quality program, relationships, trust, establishing like what are your values? How are you going to operate? Who are you going to accept? And actually starting to build the program and making sure that your staff is secure. And then we were able to start building the program. And I think that the challenge for, in my experience working with you, but also working with really any parent is you're often fear driven and it's a hard shell to get past. It is a protective mechanism that parents have developed because they've been rejected, they've been hurt. Their most vulnerable thing in their life is their child.

(02:22):

And so it can come across as an attack. It can come across as a devaluing. I mean, you have come across that way many times. And we have had many follow-up calls where we have done coaching calls and that looks like not stopping to celebrate the wins. It's taken heaven and earth to increase enrollment by this number and because you're also the board chair, right? So there's a bunch of different dynamics there. I

Mike Carr (02:46):

Think it's really important to dive in for everyone that's listening to understand whether you're starting a nonprofit or not. I think it's just the learnings that I've had with Johnna as guidance are something that would apply to any parent. And I think part of it's generational, right? So my wife and I are almost 70. We turned 70 this year. And so we grew up in the baby boomer generation. And when you had a job, you would show up eight o'clock and you'd stay till five. And it was all about, have you done the things today that you need to get done? And you really didn't bring your personal life into that environment. It wasn't viewed as professional, it wasn't viewed as appropriate. And it was just viewed really as a distraction that, hey, you're here to work. And the fact that you've got a kiddo sick at home, well, you need to handle that.

(03:29):

And if you want to be viewed as a professional and on a career track to success, those types of problems should not impact your performance on the job. Anyone that's listening to this, if you don't know this already, that is not how you build the kind of culture that we're talking about at John 13. It is like a big family and you spend a lot of time listening to and building a relationship around what's really important with every team member.

Johnna Oppermann (03:56):

And

Mike Carr (03:56):

That might be their dog. I mean, in Austin, Texas, some of these dogs that you'll see down at Town Lake on the dog trail are dressed up. They're in a baby stroller. And I can promise you that dog parent is treating that dog as well as you would treat your son or daughter. And when their dog is sick, they're not going to be in or they're going to be at the vets. And so you think that's a bit crazy, but that's the real world. And who started Southwest Airlines, I think many of you who know the history are familiar that ... He said we don't put our customers first. We put our employees first. And I always thought that was so strange until you think about it. Well, if you have happy employees, if you have a happy team, if you know the Herbs got their back and that they're going to be treated fairly and give them the time off they need and the benefits that they need, then the experience they're going to deliver to the passengers on that Southwest Airlines jet is going to be unlike anything else they've experienced.

(04:53):

And for many years, I think for the entire time Herb was at the helm, that was the case. And it's sort of the same analog. If the staff is treated well, if they feel valued and heard, and even though they're stressing out for something that seems ridiculous, or even though their car's conked out for the fifth time that week, and they have to have some time off to get to the shop or whatever, and you would think, "Why haven't they figured that out yet?" But at least they then will feel like they're important, they're valued, and then that comes through to how they interact with community members. Moms and dads, that's your kiddos that are with our program. So any program you look at, that idea that the staff are treated well and the staff are happy and the team speaks well of the program and you don't get any underlying sense that they're not saying something, right?

(05:40):

Yes. You read between the lines and all of a sudden you get a sense, a few people seem not to be quite as enthusiastic or pumped up as I thought they might be. I think that is something else to look at.

(05:52):

The fear thing's also interesting. And I do agree with you. I think a lot of parents, including myself-

Johnna Oppermann (05:56):

Every parent.

Mike Carr (05:57):

Right. We're concerned about, we always think about why might something not work and celebrating wins is part of that. Kay and I in particular, once we've done a good job for a client, we pat ourselves on the back for a few minutes and then, well, that was expected. They paid us money. We did a good job. Now what else can we do for them? Or the outcome was what we expected. We did hard work. Thank goodness it turned out well, let's move forward. I think one of the things that's much more important these days, especially with the Gen Z staffers, younger millennials, is pausing

(06:27):

And recognizing that win, recognizing that achievement so they don't feel like all the effort they put in was ignored or not seen. And again, when Kay and I were in professional environments in our 20s, we didn't expect to get pats on the back every time we did something well. We would have our semi-annual reviews, our annual reviews, and that was typically when you would get some sense of, yeah, you're doing a good job, you're going to get a raise or, no, you screwed up here, you need to fix them. And that's not the world we operate in, at least not at John 13, that every win, every opportunity for praise that's deserved, every opportunity for coaching that, "Hey, you did this fantastic. Now here's the next challenge on your ladder of growth." Doing that on a regular basis has really built, I think, the trust and the honesty and the authenticity and it mitigates the fear.

(07:14):

I mean, as a parent, when you start seeing people recognizing not just their wins, but their mistakes on a more regular basis, a lot of that fear starts to fade away because you know they really have your son or daughter's best interest at heart.

Johnna Oppermann (07:27):

I would say fear shows up in multiple different ways. Another way that it shows up is enabling. And that was something that both you and Kay were doing without realizing it pretty vigorously. And like for an example, when we were working on staff call outs and those types of things, Mike, you are like, "I will make your life easy because you make my kids' life good, right? And I will drive you home at night because your car's broken down." And I was like, "Are you serious?" There's a time and a place for something like that, but all the time if someone's car is not working, but they're able to get to everything else in their life, you should not be driving them home. They should be figuring out a way. So because what it did was it starts to erode at you. It starts to fit away at you and it starts to bother you and then you guys would stay silent and then all of a sudden you would erupt with frustration and it would be like, "Whoa, where's this coming from?" You have this huge reaction and response to something that you started.

(08:20):

Help me understand, what am I missing? And what I found was that you guys, parents are so afraid to complain so often parents are afraid to complain. They don't want to, they feel bad. They're just grateful for what you're doing. Please, oh my gosh, just don't kick my kid out. And I'm like, they have to know and trust that they can come forward. And you, I mean, how many times we had an agreement for a while, we did. We had an agreement. Do not blow up on anyone. You call me first. So you did that and you would blow up on me and then I would go, "Okay, great." And I remember one time in particular where someone had called out, Kay and you both just decided on your own that you were going to go cover the shift. You never let anybody know. And then you were at your wit's end because Kay was at her wits in.

(09:03):

Rightfully so, but you didn't communicate it with anybody. And it happened like three times and we didn't know. So I call Haden and I'm like, "Get over there now. Go to their house right now and you need to take over and we've got to figure out what kind of a pattern has been established here and what do we need to interrupt because this doesn't work for them to get to this breaking point of just boiling over and it being such an explosion." And so the communication and the cadence of communication, that's one thing that definitely we have worked through with you. Kay and you have weekly meetings about the home program and then we have weekly meetings with the team and then also parents at J13 have their person centered plans. And if they're, just for instance, this week we had someone who had some pretty significant behavior that was compromising their dignity in public.

(09:55):

And so we really had to make a decision about how do we best preserve their dignity and then had to go and it was, this is only the second time we've ever had to do this, but the parents did have to come and pick him or chose really to come and pick him up because of the situation and the way it was. There was disrobement and it was very public where it was happening. And so what we ended up doing was calling the parents together afterwards, checking on them, making sure that they were okay. How can we support you guys? We're going to modify our support plan and try and identify what were the triggers, what were the antecedents, what were the things that may or may not have contributed to this situation? And one of the things may have been that she dyed her hair and because she got some hair pulled out and I don't think that was the whole of it, but it was definitely, I think, something to note.

(10:42):

However, what we did afterwards is what matters because we called the parents and said, "First and foremost, what we want you to know is this is only the second time we've ever had to do this. " And the other one was for a medical emergency, right? They understood it. They understood it completely and they wanted that dignity for their child. And so first things first, we are committed to figuring this out. We don't know exactly how yet, but we will figure this out. This is not a, he can't come back on Wednesday, whatever. It was nothing like that. She knew that. She trusted that. She was so thankful that she wasn't receiving the call from us and fearful that he was going to get kicked out. So mitigating those fears upfront, I think, especially for you and Kay, where you guys had had to operate in a survival mode almost because you don't want to scare anybody away or you don't want to change that and change gears on people.

(11:32):

But when you weren't communicating things like when they came up, so we came up with the 24 hour rule. If something is bothering you and it is still in your brain and for 24 hours, you're literally robbing yourself, your loved one, the staff and the organization of the opportunity to improve and productivity because it starts to zap you and it's what the app is just running and draining you. And so we have an agreement and then we make agreements around what are the targets, when do you think you can accomplish this? By when, what do you need to be able to accomplish this? And then if something goes off track, then we quickly communicate, okay, this is what we know to be true, this is what I know, this is the obstacles that I face and now we have to make a new agreement around the target date or what the target number or whatever it is, the goal that we set or the agreement that we

Mike Carr (12:20):

Made. So from a parent's perspective, I think there's just some super important points about communications because I've talked about this before on other episodes, but we've never dived into it in a way that Jana has dived into that makes it real. So how do you know that a program you're looking at is going to have the kind of communications that Johnna had just described? And to me, there's some very easy things to look at right off the bat. Are phone numbers available? Are they hidden? Are personal emails available? Are they hidden? Now we err on the side of making that stuff available. I mean, I give my mobile phone out to everybody. I mean, everybody pretty much knows how to get ahold of me. It's in my signature line, this is my mobile phone, call me if you got a problem. And I'm the board chair and Haden is very open, I think with his phone number too, text me, give me a call.

(13:04):

And as we get bigger, one can say, "Well, you're never going to be able to do that. " And I'm not sure. I would rather err on the side of if someone's really got an issue and the frontline staff's unavailable because they're busy with somebody else or whatever and Haden's out because he's with another parent. As a parent, you should always feel like you have

Johnna Oppermann (13:23):

A way

Mike Carr (13:23):

To get ahold of someone that's going to listen and take action on your part. Now, from the parent side, what Johnna's talking about, I think is also very important. You can't let the frustration build up and you can't wear the adversarial hat in discussing these challenges with the staff and with the team. This should never be a we versus them. If you get into that mindset or if you get a sense that that's the way a program is run, I would run for the Hills because it's just never going to work. It has to be very collaborative. The mindset has to be we're all on the same side. We're all committed to the success of the program for your son or daughter, and we need to have open and free communications. Now, that doesn't mean, and one of the things that I've learned, and I know many of you have listening to this have already learned this, and I'm a slow learner when it comes to emotional control, is I do think it helps to let a night pass.

(14:14):

So if I'm all steamed up about something and at seven or eight o'clock at night, it's probably not a good time to fire off an email, and an email should never be the solution anyway.

Johnna Oppermann (14:22):

Yes, right.

Mike Carr (14:23):

Right. All right. So the next morning, if I still am steamed up about it, it's a phone call. It's a conversation. It's never a text or an email because you lose the ability in the text and the email to control how it's interpreted. You also can't convey the tone, right? And when you're talking to somebody like right now, the tone can be one of more sincere interest and help me understand versus I'm accusing you of screwing up, you bozeo brain. Why'd you do it? And you better never do it again or else. You lose that ability to sort of craft the context in which the words are delivered through something as cold and impersonal as an email or a text, even when you try to make it humorous. So for a lot of this stuff, Jana has taught me, and I agree with her 100% now, phone calls, conversations in person if possible is the way to do this when it comes to something that's really disconcerting or causing you a lot of stress.

(15:18):

And whatever program or environment you're looking at, hopefully we'll encourage that. And right up front, you can ask questions along the lines of, how can I get ahold of someone if I'm out of concern? And if the answer is some convoluted protocol, we got to start with so- and-so and then maybe I'll talk to you. I mean, that just isn't going to work. And we bet the parents. I mean, parents, you guys have got to be ready for an environment where your son or daughter's always not number one. Now, in your mind, they're number one. And in our staff's mind, that doesn't mean that they're going to be compromised in any way, that their safety's ever going to be at risk, but some cases, it's better for them not to get what they're asking for every time they ask for it and learn some patience and how to get along with peers and how to put up with sitting down for five minutes, even when they'd like to be climbing on the wall because it's not their turn.

(16:03):

I know in some cases that might seem inappropriate because we're paying all this money. We're supposed to make sure that our son and daughter's always having joy and fun, but we all know that's not going to happen all the time. And so there are some compromises that I think in the moment you feel have to be made, but in the long term really are for the benefit of your child or daughter growing and interacting well with their peers. And it certainly makes for a more human program, a more real program that's sustainable and it's going to be in the best interest of everybody down the road.

Johnna Oppermann (16:30):

I agree wholeheartedly. I think especially in a residential setting, your child is going to be living perhaps for the first time with other neurodiverse individuals who don't give a flip what their triggers are. They just don't. And so learning tolerance and learning how, which is part of the reason that we started the R2R program, the Respite to Residential, it's a way to prepare the staff, the parents, the community members, and just really everyone and how residential is a big, it's the deep end of when you're running a program. And so doing as much as possible to make sure that everyone is prepared before we launch that long-term initiative, that is the goal, is also for the parents to see what comes up when ... And it's learning on a smaller scale and failing on a smaller scale, because like I said, it always, you do, you're going to fail.

(17:17):

You are. It's just accept it. What do you do with it is what matters. I think that that is true. I would say it may not even be that they're not considered number one. It's that because they're number one and that the challenge that they need to face and the challenges that they're facing they need to grow in is uncomfortable, right? But I love programs that push and continue to push to become the best version of themselves versus they just arrive and that's who they are. There's not a plan for any kind of growth or development.

Mike Carr (17:46):

And pushing obviously depends on each individual, right?

Johnna Oppermann (17:49):

Absolutely.

Mike Carr (17:49):

Pushing our son, there's certain things he's never going to be able to do or only able to do down the road with an awful lot of effort. And we won't

Johnna Oppermann (17:55):

Necessarily give up

Mike Carr (17:55):

On those.

Johnna Oppermann (17:56):

However,

Mike Carr (17:57):

He's

Johnna Oppermann (17:57):

Never going to climb either. I

Mike Carr (17:59):

Know.

Johnna Oppermann (17:59):

And now he's a master climber.

Mike Carr (18:01):

I understand. But I do want parents to understand while your son or daughter is going to be challenged, and while we believe strongly in community outings, so every day our crew is out in the community doing things, whether it's vocational stuff, it's part-time jobs, it's rec stuff, we feel that's super important. And that setting alone can be challenging to certain guys and gals that just haven't been exposed to that. But I do think we try to push everyone based upon where they're at and where we think they want to go and where we think they're going to have some joy and some excitement.

Johnna Oppermann (18:35):

And their parents have a big input in that as well.

Mike Carr (18:37):

Yes, right.

Johnna Oppermann (18:38):

They're part of that and approve that. Is there

Mike Carr (18:40):

Anything else though that you want to be sure and talk through or mention to parents before we end this particular episode?

Johnna Oppermann (18:47):

I guess the only other thing that I would say is that one of the unique things about J13 and the reason that I wanted to work with you guys was because it was founded and is run by a non-relative of people, someone with a disability or someone with complex special needs. I felt like I've worked with so many nonprofits that the parents are the founders and that has its own challenges and so does having a new leader. And I think the combination of UNK and then Haden, it's been a fun journey and it's been a healthy mix of how to create a more sustainable program from the beginning instead of having that founder syndrome hit you like a ton of bricks when the founder moves on, is asked to leave or passes away. Yeah.

Mike Carr (19:34):

And I think that speaks to the trust you have to have. I don't go hardly ever to see what's going on at the day program, even though our son's always there. I mean, Haden and his team run the show and he's the executive director. He interacts with the parents. I don't interact with most of the parents. So compared to how we've run our own entrepreneurial ventures over decades, this is very much hands off. We certainly have a say and we can certainly express our opinion, but when push comes to shove, we have to let Haden do it the way he wants to do it and that's the integrity of the program. No parent, I don't care how much money they donate or how important they are and connections with the community, no parent can really dictate the course for whatever program you're looking at for it to be sustainable and successful long term.

(20:23):

I mean, we've talked a lot of programs that have gone down that path and they're in a world of hurt right now or they're no longer viable or who knows what, right? And so I think there's that honest realization that even though you help start something, there are other people that were part of that founding group and they don't have skin in the game in terms of a child. And so they can actually manage, run, and grow the program in a much fairer, much better way than a parent who automatically is going to be biased to leaning into what's best for their kiddo. So to conclude, we talked about communications. Both Johnna and I would be happy to field any emails. So our emails are mike@john13.org and Johnna is spelled Johnna, so everyone knows how to get ahold of you.

Johnna Oppermann (21:13):

J-O-H-N-N-A at John13.org.

Mike Carr (21:17):

Yeah. And if you guys have an immediate need, I'm going to give you my cell phone right now. I don't always answer it if I'm in another meeting, but I do listen to my messages and that's 512-917-6923. And I've talked to moms in other countries around the world. I can't always answer your questions, but what we're trying to do besides having boots on the ground here in Austin, Texas, is on this podcast, we're trying to share the techniques, the approaches, the tricks, the tips that we've learned that you then can take to start your own program or to pick a program or whatever it is you want to do. I mean, I think that's part of the reason that we're all here. Our namesake is John 13, comes from the Bible verse, Jesus washing the feet of the apostles. I mean, we're here to serve and we're not too proud or too highfalutin not to serve the lowest of the low for the folks that are in the greatest need.

(22:10):

So please feel comfortable reaching out to us if you want to.

Johnna Oppermann (22:14):

Yes.

Mike Carr (22:15):

Thank you so much. Have a great rest of your week. Come back next week. I'm not sure what we're going to talk about next week yet, but we'll have something fun and exciting, I promise. See ya.