Lisa Tschudi Transcript
00:00:46 Valerie Arbeau:
Hello and welcome to the special Needs Moms Circle of Strength podcast. I am so glad that you are here checking in with us and I want to introduce you to my guest for today, Lisa Tschudi. Lisa is the host of ‘Love Doesn’t Pay the Bills’ where she explores the role of family caregivers in the modern United States through personal stories and interviews with leaders. Lisa is a parent of a young adult with disabilities and direct support professional. She co-founded a podcast production company to work from home flexibly outside of caregiving. She is also studying data analytics with the intention to put her mathematical background into action to explain with numbers, charts, and graphs. The experience of family caregiving to non-caregivers. So Lisa, welcome and thank you so much for being a guest on our podcast today.
00:01:35 Lisa Tschudi:
Thank you very much for having me. It is a kind invitation.
00:01:38 Valerie Arbeau:
You are very, very welcome. I am happy to have you here. I am curious. I just want to go back to your intro, or your bio and you had mentioned that you have a mathematical background, and your hope is to explain with numbers and charts and graphs the experience of family caregiving to non-caregivers. Can you tell us a little bit about that?
00:01:58 Lisa Tschudi:
You summed it up well. In my life, before I had my kids, I did study mathematics at the University of California, Santa Cruz, and my kids were born right after college right away and ended up being an intense parenting caregiving experience for 22 years and on. And so I have realized in recent years just how deeply I miss and need those sorts of mental challenges. And I also am just a curious person, and you know, it's kind of a cliche to say it's important to be a lifelong learner, and I've, you know, continued learning etcetera, etcetera. But I really have, I have everything from that BA in mathematics to informal study in visual arts as well as when I was in college, I was also taking visual arts classes to massage therapy to a six-month course for advocacy for people with disabilities, business mastery course for running my small business and now data analytics boot camp. I am at the end, we're about to enter our final project for the next couple of weeks and it's just a big group project that we work on in ‘Teams.’
00:03:19 Valerie Arbeau:
Cool, cool.
00:03:20 Lisa Tschudi:
Yeah, yeah.
00:03:21 Valerie Arbeau:
Thank you for sharing. Usually my first question is what is a unique thing about you? What you have been describing is probably unique to most people. Is there anything else that's unique about you that we need to know?
00:03:34 Lisa Tschudi:
I would say that's a good place to leave it. Yeah, I have a unique combination of education and skills and experience at this point. And I really do love the classroom. I love, you know, to be finding out new things and I'll get my mind stuck on some puzzle or challenge and just must solve it sometimes. So that's just how my brain works.
00:04:00 Valerie Arbeau:
No, I love that. And I love that you've been able to utilize it to benefit you and bring enjoyment as well as increasing your knowledge and your skill set. So amazing. Congratulations.
00:04:12 Lisa Tschudi:
Thank you.
00:04:13 Valerie Arbeau:
Tell us Lisa a little bit about your special needs mom’s journey.
00:04:15 Lisa Tschudi:
So my second daughter was around six months old. She started to not meet developmental milestones. And we started looking into that and at the same time, when she was about 13 months old, she ended up having her first seizure, which was a status event. She didn't go easy on it. It was in the hospital big status event. So really that was kind of the beginning of realizing something is unusual here and she's going to have some big extra needs and from that point on, for really for quite a few years, I was extremely focused on the seizures and on eliminating seizures from our lives. And I ended up being referred early on relative to what a lot of people's experience might be to a neurologist and dietitian pair that work up in Portland, well, did at the time, work up in Portland that used the ketogenic diet to treat epilepsy. And so we did that for nine years. And that was a very big part of any challenges for me or the sense in which it was really hard work, because that diet is so very specific to actually do it medically, it's also kind of an off and on a fad thing to say you do keto diet, but if you're actually going to put yourself in ketosis, it requires an awful lot of management and so fortunately we had an amazing dietitian and neurologist that helped me out and guided me the whole time, and it did also work for my daughter really well. It was like she had seizures every five days, and she would end up needing Diastat, which is an emergency medicine to stop the seizures at that moment. And then once we started the diet on the 5th day, there was no seizure and we just went, wait a minute. What's happening? Because it had gotten into a pattern that was very predictable and regular before that.
00:06:25 Valerie Arbeau:
Yeah.
00:06:28 Lisa Tschudi:
It was kind of like off like a light switch and then maintenance did require a lot of work. And every six months or so, my daughter would have a seizure or a handful of seizures, and we would need to talk to the dietitian and change some things. And it just kind of went on like that. Eventually, she got stable, which was awesome. And I started asking her neurologist to get off the diet, and we ended up having to switch because that neurologist retired. And so forth. And we ended up not having the same support for a while, but also just really feeling like, hey, maybe we can, you know, stop doing all this work at some point
00:07:05 Valerie Arbeau:
Yeah.
00:07:06 Lisa Tschudi:
And to manage this diet. And the dietitian, the neurologist, you know, ended up keeping her on the diet for nine years across the several different neurologists. Because once something is stable and working, they don't want to mess with that.
00:07:16 Valerie Arbeau:
Right, yeah.
00:07:18 Lisa Tschudi:
So, yeah. That was our experience as far as epilepsy and the seizures and probably about the hardest thing besides also financial. During that time, we were also a real young family that hadn't, you know, established ourselves in careers and didn't have a stable home of our own things like that before we had the kids. And so we moved quite a few times to follow my husband's career and I was like project managing cross country moves like several different times in addition to my daughter's care for
00:07:48 Valerie Arbeau:
Right.
00:07:49 Lisa Tschudi:
Not only the epilepsy I just mentioned, but also you know as we realized her developmental progress wasn't happening. PT, OT, speech, IEPs in school, once she started school, all these different aspects of her care as well, so, yeah.
00:08:01 Valerie Arbeau:
Yeah. I can relate to the cross-country moves or project management moves, especially when you have a child with a disability that requires a big medical team. I have experienced similar; we live in Canada, so we went from Alberta and moved to Nova Scotia and then we ended up moving back. And I remember thinking to myself, I am not doing this again. Trying to get connected with the right people for your child and then also for yourselves, because we needed a dentist, we needed a doctor, we needed other medical professionals in our life. My husband has some issues. So yes, I remember thinking, never again. We were fortunate when we moved back to Calgary, we were able to slot into many of the medical teams that we had prior to leaving. So that made it a whole lot easier, but we have stayed where we are. We are not moving again. It is a lot of work and as you say, it is exhausting. It can be done, but if you don't have to do it.
00:09:00 Lisa Tschudi:
Yeah. I think that is something that people, you know, tend to throw out there as a solution for any family that's struggling to afford life and that kind of thing. Like oh, move somewhere it's cheaper. Move where there's a better job you know either direction, right? People will argue for it, and my experience showed that. I mean, we moved I think 10 times or something. In the first, you know 15 years of my daughter's life, and then actually we had our house burned down in a wildfire and ended up getting really, lucky to move into another house that we were able to purchase. Right after that, because it takes two years or so for homes to be rebuilt and there weren't rentals, we did want to stay in this area. We had stabilized for a little bit at that point before the fire happened, so.
00:09:51 Valerie Arbeau:
Wow. Navigating a wildfire. Ooh.
00:09:52 Lisa Tschudi
Yes. Yeah. Yeah. That was like, one of the easier things we've been through. And we were just kind of like looking at each other like, here we go again. OK, another thing.
00:10:03 Valerie Arbeau:
Yes.
00:10:04 Lisa Tschudi:
We're good. We had insurance that treated us well. We got everything you would hope that insurance would be. And then we had other people just reaching out to us left and right for support in different ways with them.
00:10:14 Valerie Arbeau:
Wow, cool.
00:10:15 Lisa Tschudi:
So it turned out, you know as well as it possibly could, I mean not that I would recommend losing your home in a wildfire as an experience. But if it was going to happen, like everything that happened afterwards for us went well.
00:10:27 Valerie Arbeau:
Wow. Wow. I'm just going to skip back to just addressing our audience, because I do know that there are families, and you did bring that up that need to move for various reasons. And just thinking back to why we moved back to Calgary was because what we needed for our oldest, who was using a communication device still is, that wasn't really happening for them in Nova Scotia. So that was the big impetus for us moving back to Calgary so that they would have an opportunity while they were still in that developmental stage for taking on a lot newer information. So that was the biggest impetus for us moving back to Calgary, to give our child an opportunity to be able to use their voice. And I have to say that she's doing amazing with her communication device.
00:11:12 Lisa Tschudi:
Yay! Way to go! Yeah.
00:11:14 Valerie Arbeau:
So I do recognize that, yes, there are reasons to move. And for some people, it's downsizing, as you say, for some people, it's financial. And so one must weigh up the pros and cons. But the actual navigating it and orchestrating it and project managing it, yeah, is exhausting. And it's not something you want to be doing on a regular basis for sure.
00:11:35 Lisa Tschudi:
Yeah. And there's a lot of indirect costs where, you know, you mentioned reestablishing yourself with all your medical care and everything else you might need to know about in the area where you live. And your social ties and all that as well. There’s a lot of those indirect
00:11:50 Valerie Arbeau:
Yeah.
00:11:51 Lisa Tschudi:
Costs as well, but people really do need to weigh up.
00:11:54 Valerie Arbeau:
Right.
00:11:54 Lisa Tschudi:
Sometimes I mean you have an example where it turned out totally worth it, right? All the moving that I did, you know, did land us in a pretty good position right now. And I don't know, you know exactly where we'd be if we didn't make some of those moves but, it might not be the same, yeah.
00:12:10 Valerie Arbeau:
Right for everyone. All right, well, thank you for sharing that and I commend you for dealing with wildfires. I have an affiliation with the North Zone of Alberta and they, as we speak, are currently dealing with smoke from wildfires. Last year was brutal and I just can't imagine what it must be like to be a victim of a wildfire and lose everything. And then the aftereffects of that trying to rebuild but also as the fires are going, all the smoke that you must deal with like it just boggles my mind that people must deal with that.
00:12:48 Lisa Tschudi:
Yeah, where we live, there's kind of smoke season every year as it is and a lot of us, you know, we're already wearing masks before COVID for the smoke at least seasonally and using air filters and staying inside when the smoke is bad. Yeah, because that is problematic.
00:13:08 Valerie Arbeau:
OK. So moving on, Lisa and thanks so much for sharing about your journey as a special needs mom and dealing with seizures and raising your child and the moves and the wildfire and all of that. I mean, it's hard enough raising children and then add the complication of a child that has disabilities and then add in the moves and then add in a wildfire. I just. I'm amazed that you can still smile.
00:13:32 Lisa Tschudi:
You must, but yeah.
00:13:34 Valerie Arbeau:
So, Lisa, tell us. Raising children for many of us can be a financial strain. So tell us about how you've been able to navigate this and what programs are available where you live.
00:13:44 Lisa Tschudi:
Yeah. So when my daughter was young, there were very few formal programs. I was asking left, right, and center, doctors that she would see and all the various therapists. And once she got into school, those staff at school, if they had any referrals for childcare, would accept her. And I could work so that I could add income to the household. And there really was very, very little. I finally found one program when my daughter was about 10 that would provide about 10 hours a month of respite care. It was not something to do while I would work another job. And so really, we relied on my husband's income. We, like I said, followed his career and kind of made that choice. Not super consciously, but here we are and it's a very common thing to do, right. The woman's going to be the giver. The man's going to pursue his career. And it was not super comfortable at a lot of times. There was not enough income for all four of us. And I was, you know, one of the tasks on my plate was always to watch a very tight budget and manage our finances in that sense and look for cheap ways to get things done whenever I can as well and all of that. So in some ways I was somewhat successful with some of that just financial management and household management on a tight budget and we ended up getting to the point where my husband did progress well in his career, and he did well. And he ended up being laid off in 2014
00:15:30 Valerie Arbeau:
Oh no.
00:15:30 Lisa Tschudi:
And again in 2015. And no, absolutely no fault of his own. The first company was basically almost shut down.
00:15:38 Valerie Arbeau:
Okay.
00:15:39 Lisa Tschudi:
90% of the company was closed. The second one, the hosts that he had been hired to work with quit doing radio, and so he ended up finding a lot of contract work. He went into just self-employment from home, which gave us a lot more flexibility as a family, a lot more, you know, at least if there's an hour in between other care that I have for my daughter, he can be there, and my daughter could be sitting in the room next to him and I can do what I need to do. Those sorts of things were a lot more possible. And so eventually, he had so many clients and so much work, self-employed, that he couldn't do it all as one person. So we founded our company, and we now have a company called ‘Two Squared Media Productions’ that has ourselves and currently two other employees likely to come back up to three soon. We produce about 25 podcasts a week.
00:16:38 Valerie Arbeau:
Wow
00:16:39 Lisa Tschudi:
And that's have a radio guy husband and he doesn't know how to not do radio. And so yeah.
00:16:48 Valerie Arbeau:
Well, I love that he's been able to pivot and then through that pivot been able to bring you on board and you know through self-employment be able to provide for his family and so. This is the business that you've started to create income while caregiving, is that correct?
00:17:04 Lisa Tschudi:
Basically, yeah. The main reason we started it is because it was a way that works relatively well for us to both earn income, both be involved meaningfully in something outside the household and just do it together. And both be here to step in back and forth with our daughters care so. That's how that came about and why our business exists and at this point, you know again, I'm realizing that I really have a need for certain kinds of, like, mental challenges. And I think it would really be beneficial for my family to go back to having some separate interests in each of us, really doing things that are not so closely entwined with each other. So I'm looking at the data analyst’s career path and working on starting that and so that's where we're at.
00:17:56 Valerie Arbeau:
I was just going to say that not too many couples can work together and live together and raise their children together, so kudos to you. How long have you guys been doing that now?
00:18:07 Lisa Tschudi:
We started the business in 2019.
00:18:08 Valerie Arbeau:
Wow, okay.
00:18:10 Lisa Tschudi:
So yeah, it was a couple years before that where my husband was self-employed from home from about 2015. So we were, you know, always together
00:18:19 Valerie Arbeau:
Yes.
00:18:20 Lisa Tschudi:
From that point. Really.
00:18:21 Valerie Arbeau:
Yeah.
00:18:22 Lisa Tschudi:
Yeah.
00:18:22 Valerie Arbeau:
And look at you, guys. You're still married?
00:18:25 Lisa Tschudi:
Yep, amazingly.
00:18:27 Valerie Arbeau:
No, that's amazing. That's amazing. Just to kind of make sure that I am understanding. So it's been a journey for you.
00:18:34 Lisa Tschudi:
Yeah.
00:18:34 Valerie Arbeau:
Financial strain. You learned quickly. And I guess having a mathematical background as well, how to juggle a budget, a very tight budget. And I just have to say my mom, even though math is not her thing. We grew up in a household where there was little income coming in, even though my mom was working as a nurse. But for other reasons, it was a tight budget and so I remember her making things do. She sewed for us. She made things from scratch. I remember the days when we all used to make bread together. Those were ways that she implemented to help keep us on a tight budget and navigate that tight budget. But I love how you've been able to pivot from that. You know your husband was able to go out and I can't imagine being laid off. I know that this is more common than we would like to admit. I know I've experienced where I was laid off, even though I hadn't done anything. The hospital was just closing, and it was moving into a hospital for mental health patients. And it was housed in the General Hospital, so I had to leave my job. But I remember just the devastation that I felt, so I can only appreciate your husband having to go through that twice. I've only had to do it once. So love that you guys have picked up, worked together, and created your own business, which is amazing. Not everyone has the fortitude to do that. So do you have any tips or for those that do or have an interest in how to start their own business? Do you have some tips?
00:20:02 Lisa Tschudi:
I would say connect early and often with your local small business development center if you're in the U.S. I imagine there's probably something similar in Canada or anywhere else where they provided a lot of guidance for us on the technical aspects of getting the business set up and things that we needed to know and free consultation.
00:20:27 Valerie Arbeau:
Wow.
00:20:28 Lisa Tschudi:
Yeah. I did take a course that cost a reasonable amount of money, but for a one-to-one consultation that was provided and so I would definitely connect if you can, with a small business development center or whatever kind of group that exists in your area to support the new entrepreneurs even before you start the business, if you're thinking about it, that is definitely a way to go and also join any kind of groups like your local Chamber of Commerce, where you can talk with other small business owners and get a feel for their experiences and their knowledge.
00:21:05 Valerie Arbeau:
Right.
00:21:06 Lisa Tschudi:
And at one point it was really comforting to me, just to know that other small business owners had similar challenges to me and It's nice to just have that feeling that you do. You're not alone. Yeah. Yeah.
00:21:19 Valerie Arbeau:
Right, right.
00:21:20 Lisa Tschudi:
Yeah.
00:21:21 Valerie Arbeau:
And there's somebody to learn from because somebody's a few steps ahead of you that you can gain some insight and wisdom from. So no, that's great. Thank you for that tip.
00:21:29 Lisa Tschudi:
Yep. Yeah.
00:21:30 Valerie Arbeau:
So, Lisa, tell us what's the most important lesson that you've learned in life?
00:21:34 Lisa Tschudi:
I think that you mentioned the word to fortitude, and I think it's true that a lot of times it's really, worth it to do the hard things and do the tedious things and just keep going no matter, you know how you're feeling on that day or whatever. That's something that I think having a child with a disability will always teach you too. Of course you have someone depending on you in that way.
00:22:04 Valerie Arbeau:
Yeah.
00:22:05 Lisa Tschudi:
You just do what must be done, right. That's what we do. And another piece of that is at the same time, I have learned increasingly over the years to look at myself and value myself differently over time. And look at the things I do as a parent of a child with a disability as actually being work and being valuable and contributing right.
00:22:30 Valerie Arbeau:
Yes.
00:22:31 Lisa Tschudi:
And I think that there's this way in which a lot of the messages that we hear and we have are common in modern society are really gaslighting to moms and dismissive and I just would like people in the position I was when I was younger to really hear that. If you're feeling like something is difficult or inhuman or impossible, it probably is right, and you are human and you do deserve a team to support you because that's when inhuman things can get done. That's when the magnitude can like tenfold when you have a couple of people working in the same direction, and I think that you know, there's this way in which we expect moms are like this impossible, you know, standard of like always on, always giving, always available and it's just not true. We're humans and it's OK to be human and be a great mom.
00:23:31 Valerie Arbeau:
Yeah.
00:23:32 Lisa Tschudi:
And that’s probably the biggest piece of learning that is ongoing for me as well. I'm living in this culture too and like learning repeatedly how to work with it because it is something so present for all of us in the way we talk to ourselves and the way we talk to each other, the way our formal structures are set up, it's so, no, mom will take care of. You know, the 4.2 jobs that somebody needing around the clock care needs. Mom will do those 4.2 jobs and earn money somewhere, right? Like, no.
00:24:04 Valerie Arbeau:
I love that you are bringing up the fact that we're on a lifelong journey and as you were talking, I'm thinking that our situations do change as our children develop and they grow, and they reach new milestones and they crossover into adulthood. But I love the fact that you remind me and our audience that we are human and that we deserve grace as well. We are probably because we are giving people, we're probably giving grace left, right and center to others, but often we neglect ourselves. So I just want to remind our audience that it's important to remember you are human. You have limitations. Because I know when I entered motherhood, I thought Superwoman. I can do it all and I did learn that no, I can't, and that it took some time to recognize that it's OK to not do it all and to not have all the answers and to not know where exactly everything is in your house. So give yourself some grace and enjoy the moment. And one of the big things that I am trying to get across to myself and I also share with my clients is to be present. Because as you know, your children grow quickly, and they move through their different phases, and I can look back and see probably didn't do the best job of being present when they were younger. So that's something that I am working on now because it's never too late. I just want to say that my children are now 22 and 19. It's never too late to be present, cause that's what they're going to remember, is you being there.
00:25:27 Lisa Tschudi:
Absolutely. Yeah. Yeah. I would agree. So I've talked a lot about kind of the difficulties and complaints and so forth that I've been through in my experiences and It's a piece of learning ongoing for me as well is to lead with, you know, the beautiful things that have happened or the things I'm grateful for and so forth. And there are some of those. And one of them is that I have two young adults who still live with me, and I didn't have to experience the emptiness, you know thing and I'm sad and lonely and they're gone. And you know now they're still here, I have them indefinitely. They won’t go away. It's a real sweet thing in a way. You know, one that requires ongoing care and one that is her caregiver.
00:26:17 Valerie Arbeau:
That’s beautiful.
00:26:19 Lisa Tschudi:
Yeah. And along with that, part of the reason that works out for her is you also mentioned services or support or how did we get by financially what and once the ACA happened here in the U.S., there was a huge expansion of home and community-based services for Medicaid. And that included the kinds of in-home care that we can access. So when my daughter was about 13 or so, she became eligible to hire home caregivers for way more hours than she had under the previous program I mentioned. And I still have my grips with that because it's up to the family to recruit.
00:26:57 Valerie Arbeau:
Yes.
00:26:58 Lisa Tschudi:
The employees. And schedule them and do the fill in
00:26:59 Valerie Arbeau:
Oh yeah.
00:27:00 Lisa Tschudi:
When somebody calls out and that is a job. And so.
00:27:05 Valerie Arbeau:
Yeah.
00:27:07 Lisa Tschudi:
And at first it was difficult to find people too as the programs progressed and certainly here in Oregon. A couple years ago there was a huge bump in the wages that were what Medicaid paid to an agency and therefore most agencies raised their wages tremendously. So that helped a lot with recruiting and hiring and people being interested in working these jobs as well as once the person's 18, then parents are eligible to work those jobs.
00:27:36 Valerie Arbeau:
Oh, okay.
00:27:37 Lisa Tschudi:
My husband and I work as my daughters. It's called direct service provider DSP in home caregiver. And so they're also in the state of Oregon, has been a movement that's just super impressive. I have episodes of my podcast about it, where children under 18 are going to be allowed to access that as well. It starts with a very small program and a lottery for just a few children or relatively small percentage of those who would otherwise qualify. But it's happening and it's a start.
00:28:08 Valerie Arbeau:
Cool Awesome.
00:28:09 Lisa Tschudi:
So I think that's incredible because I do think that. Again, like whatever Mamas are listening, whatever family caregiver and any other title is listening, caregiving is work. And the fact that you love your person tremendously and the fact that you want all the best for them, and you're committed to them and all of that doesn't change the fact that it is work and it is also an opportunity cost taking you away from whatever else you might be doing. And you are allowed to have other interests as a parent of a child with a disability.
00:28:41 Valerie Arbeau:
Absolutely.
00:28:42 Lisa Tschudi:
And be a full person yourself and you matter just as much as your child.
00:28:45 Valerie Arbeau:
Amen. Yes.
00:28:47 Lisa Tschudi:
Yeah, yeah.
00:28:48 Valerie Arbeau:
Definitely. Definitely.
00:28:48 Lisa Tschudi:
Yeah.
00:28:49 Valerie Arbeau:
All right. So before we conclude, ask you to share some words of encouragement with other moms and parents of children raising children with disabilities or special needs.
00:28:58 Lisa Tschudi:
I think that the biggest thing that I would like to leave people with or encourage people is that you do know your own experience and if something feels difficult, it is. If something feels inhuman or not doable, it is. So find your people that together make it possible.
00:29:19 Valerie Arbeau:
Yeah.
00:29:20 Lisa Tschudi:
You know, keep looking for them and keep doing whatever steps you can. There are always some steps that you can also take to help yourself and make things work just a tiny bit better. And those things do matter. It could be a matter of like, I'm going to take my 2 minutes to make myself my tea, that I really want to drink right now.
00:29:39 Valerie Arbeau:
Yeah.
00:29:40 Lisa Tschudi:
And sit and drink my tea or I'm going to pay attention to my environment and, like, open and close my windows as I want them or anything like that, you know, like. I'm going to do those little things. Really just reinforces the message, too, that like, you can have comfort and peace and the things that you need to perform well, right?
00:29:59 Valerie Arbeau:
Exactly. Exactly. Well, thank you so much for sharing that. Where can our audience go to find you or find out a little more about you?
00:30:04 Lisa Tschudi:
You can look up ‘Love Doesn't Pay the Bills Podcast’ either on Apple Podcasts or the Facebook page, and I do read messages that will come in through the Facebook page if you want to write to me, and that's probably the best way.
00:30:18 Valerie Arbeau:
OK. Lisa, I just want to say thank you so much for being on the podcast and being our guest today. I have loved chatting with you and learning a little bit more about you so thank you so much for being here.
00:30:28 Lisa Tschudi:
Thank you.
00:30:30 Valerie Arbeau:
You're very welcome and I just want to remind our audience to 'Live with Intention and embrace the Journey.'
