Episode 6 Transcript
00:03 [Allycia Wolff] Welcome to Focus on the Future, a future planning podcast for caregivers and families, supporting people with disabilities. Focus on the Future is a podcast of The Arc Minnesota, a nonprofit organization advocating for folks with intellectual and developmental disabilities. My name is Allycia Wolff and I’m an advocate here with The Arc Minnesota and your host for Focus on the Future. In this week’s episode, we are going to be speaking with Brian and Jen Thayer from White Bear Lake, Minnesota about their experience in caring for their son, Roa, and how amongst all of the care that they’re providing, they’re able to care for themselves. Thanks for joining us.
00:41 [music playing]
00:47 [Allycia Wolff] To start this week’s podcast, I want to take one moment for everybody who is listening to take count of themselves, where they are, and how they’re feeling. So join me for just one minute as we do a little meditation practice. We’re going to start by breathing and when you’re ready, take one big inhale and one slow exhale. Look around and take count of where you are. What are you doing in this moment? Actually physically look around. What’s the weather like? What does it smell like? How do you feel? Consider where your body is in this moment and what part of you is touching the ground or the earth. Are you sitting or standing? And then little by little, we’re going to work from wherever we’re touching the ground up to the top of our body. So you may wiggle your toes, extend your ankles, relax your legs, sit up just a little bit straighter and lengthen your spine, open and close your jaw. Relax any tension out of your forehead. And one more time. Inhale, fill up all of the parts of your lungs and exhale slowly. Let it all out.
02:52 [Allycia Wolff] Taking just a few moments every day to be aware of how you feel can give you space to process and focus. A lot of the things that I’ve learned about meditation really highlight that meditation itself is the practice of focusing. And if you can make yourself focus in a meditation, it enhances the rest of your life because you’re able to focus in times when you’re stressed or feeling overwhelmed or even in the times that you’re happy. I think we’ve all had moments where we can be pretty overwhelmed. And so later on in your day or in any moment moving forward, remember that you can breathe and take count of where you are and what your body feels like to feel more grounded in whatever space you’re taking up.
03:48 [Allycia Wolff] Moving forward, today I sat down and talked with Jen and Brian Thayer about caregiving and how caring for their son Roa has impacted their life and their relationship and how they see themselves and how they cope with being a caregiver. They had a lot of really wonderful things to note. I know Jen and Brian Thayer personally and professionally in my life and it was really great to sit down and chat with them. So here is their interview.
04:21 [Allycia Wolff] Welcome, Thayers. Thank you so much for being here today. Would you mind introducing yourselves?
04:29 [Brian Thayer] Yeah, thanks for having us here. My name is Brian Thayer.
04:34 [Jen Thayer] And I’m Jen Thayer.
04:36 [Allycia Wolff] Great, thanks. And you guys live in White Bear Lake still?
04:40 [Jen Thayer] Correct.
04:41 [Allycia Wolff] Yeah. Tell me about your kiddo.
04:43 [Jen Thayer] So we have two boys. Our oldest is 11 years old and has quadra spastic cerebral palsy. And then we have one other son and he is nine and he’s just kind of your typical kid.
04:59 [Allycia Wolff] Great. So we are going to chat today a little bit about what it means to be a caregiver and how you can take care of yourself amongst all of that. And first I would love to hear Brian about the group that you’ve recently started. You’re facilitating kind of like a dad’s group, right?
05:18 [Brian Thayer] Yeah, that’s something we’ve, we’ve had two meetings now. We’re meeting once a month. And it’s just something that I’ve been thinking about probably for almost a year, where I noticed that there was a lot of groups and a lot of Facebook pages and all that stuff that are really focused towards the moms or the female caregivers. And I would meet with a couple of other dads like maybe once or twice a year and just got a lot out of that. And I thought, well, it’d be great if we could expand this to people outside of my circle, you know, so other dads could come or other male caregivers could just come and, and you know, we talk about work, we talk about sports, we talk about, uh, our kids’ bowels movements. [laughs] We talk about feeding them, we talk about therapies, just kinda anything that comes up. And it’s really freeing to be able to talk to people who understand that kind of stuff. Instead of.. I get a dad who only has typical kids, you can’t talk to them about some of the things you run into with a child with special needs cause they just, one they don’t understand. And two, you get, you know, you get sympathy or you get pity. You don’t get, God, yeah, I know that happened to me yesterday and here’s my story. And to be able to laugh about that kind of stuff because it is, it’s part of life and you gotta laugh about it. So…
06:45 [Allycia Wolff] And Jen, how do you feel that you connect with different caregivers?
06:52 [Jen Thayer] Um, you know, social media is kind of the biggest outlet that we have. And when Roa was smaller, we tried to do some mom meetups and things like that, but life is busy for people and so many people do balance, family and career and you know, in some cases there’s divorce and they don’t have their child all the time. And there’s so many different things that just make meeting up in a group on Facebook just the easiest way.
07:25 [Allycia Wolff] And what about hiring caregivers? Tell me what that experience has been like to hire somebody that you don’t know and welcome them into your home to support Roa.
07:36 [Jen Thayer] You know, honestly as parents, when we first started hiring PCA’s to come in, the personal caregivers, to help us care for Roa, it was nerve wracking because we knew how he had to hold his head to swallow and we knew how he had to fall asleep at night in order to, you know, not have reflux happen or all of those different things that we think about, they wouldn’t think about. And so, it’s exhausting having to train someone to be another you.
08:07 [Allycia Wolff] Absolutely. How do you continue to balance that in your own life? Because it is so exhausting to bring people in. You know, because if you could do it all you would, right? I feel like, like I know you guys generally enough to know that you would, but how do you balance that?
08:28 [Brian Thayer] It’s really difficult from our standpoint when we interview people to be a PCA, they really, we really have to be comfortable with them. And we’ve had a few in the past so we just weren’t comfortable with and our son Roa didn’t like them either. You know he can’t tell us that, but he can communicate it to us. And in the end it didn’t work out very well. So the first step is, is when you’re meeting with somebody, do ya just feel absolutely comfortable with them and feel like you can trust them with your child who needs everything from you.
09:07 [Allycia Wolff] Making sure that your like vibes align. It sounds, it sounds kind of hippie, but it’s, I think that, that there’s a lot of warrant to that.
09:15 [Brian Thayer] Yeah. And then setting up some very clear boundaries and very clear expectations.
09:23 [Allycia Wolff] How do you do that?
09:26 [Jen Thayer] You know, I really, one of the things that we live by in our family is humor and just being straightforward and honest, you know. We are big…um, communication is where it’s at. And so I always like to touch base. I always make sure they feel comfortable coming to me with anything, with any issue, with any question that they have and kind of setting that up right away that we are just, you are going to be an extension of our family. You’re in here with us and just feel free to talk to us in any, you know, with anything that you have. And like Brian said, you do….When we first talk, we talk about the guidelines, we make sure, you know, a couple of weeks to a few months into their help, we make sure that we say, is there anything that you’re questioning. I mean, how was the bathroom going? How was, you know, do you feel comfortable driving a handicap accessible van? All of those things cause they all come into play with caregiving.
10:29 [Allycia Wolff] Absolutely. Yeah. It’s a really big piece of your life to, just to like, open up your home and that level of privacy to different people and have, you know, like staff turnover is a reality for everybody. How do you make sure that you as a family have private time, the four of you and then as a couple?
10:54 [Brian Thayer] I think as a family now when we have a PCA, it’s usually for the summer, for parts of the day. And then throughout the school year as we can get one so we can have time together, the two of us, Jen and I. Other than that, we don’t really, the PCA isn’t really around if both Jen and I are around. So from a family, private time, we have a lot of private time. Our kids are not involved in sports or a lot of extra school activities except for therapy and church. So we have a lot of family time together, which is good. And then Jen and I, we get… You know, we went out for lunch before we came here and I can’t remember the last time we probably got to go out together. I know it’s been a while, but you gotta find those small moments during the course of the day or the week to do that stuff because our experience has been, you’re not going to get that weekend away or you don’t get to go someplace overnight very often without the kids just, because of the level of caregiving. So I would say just finding the small moments is huge.
12:12 [Jen Thayer] Yeah. I think too with that on a positive note about it, like when you do have those moments, you really try and make the most of them, and you soak up every minute that you can. Another thing that has really helped is we are very routine in our family. And just having a set schedule and routine, you know… We always try and touch base and talk about, you know, the budget on Saturday mornings and we talk about, you know, our kids and involvement in school activities in the evening when Brian is home. Yep. And we have a whiteboard where we write our calendar, when dad’s gonna be gone for work or when the kids have something special coming up. So we try and just…communication is huge. And just having that expectation met with the schedule.
13:06 [Allycia Wolff] One thing that we find is the divorce rate is higher with families that are caring for a child with a disability versus families that don’t have a child with a disability. So the rate is much higher because of the stress and the communication that’s needed in that process. Do you have anything that you’d like to share to that?
13:28 [Brian Thayer] From the man, the father, the husband side of things, is that your role in the family is going to be so much different than maybe what you experienced growing up from your father or what you had in mind for what being a father is going to be. I know in my mind it was going to be hockey games and playing out in the yard and you know, all this fun stuff, right? And as the father to a special needs child, it’s not that definitely. It’s helping them go to the bathroom, it’s feeding him three meals a day. It’s washing him in the shower, it’s picking up and carrying him from one spot to another to another. It’s nothing that I expected and I think that really, and that’s part of the whole dad’s group that I wanted to start was dealing with some of those feelings and some of those thoughts that this wasn’t how I planned my life to be.
14:30 [Brian Thayer] And it’s really, it can be a real inconvenience to people and especially in society where the man is supposed to be the go to work, bring home the paycheck and you know, fix things around the house. You’re not really allowed to or supposed to do all the intimate things that you have to do with your child with special needs. And it can be a real, it can be a real divider in families, especially if the husband, dad, wants to maintain that role and the mom is over here saying, I need so much more from you than that. And how do you, how do you get to that spot where both you understand that, and, and are willing to give a little.
15:15 [Allycia Wolff] How do you get to that spot?
15:18 [Jen Thayer] We had some tough years. We had some years of just exploration of our roles. After being a career woman, being a teacher for so long, and then staying at home, you always expect that you’ll go back to work. Your kids will go to school and then I would go back to teaching. And to have that change to being full time caregiver and you know, spending a lot of time on the phone, making appointments or worrying about bills and catching up on sleep and keeping up with, you know, laundry and all of those things. And I think it’s just, you know, the fact that like Brian said, Roa, you know, needing help with every single daily task. It’s like having a lifetime infant. It’s someone who relies on you for everything, from sitting up to, eating and it really does take a toll on you and just as a couple, you feel disconnected a lot, especially when Brian travels for work.
16:30 [Jen Thayer] And he comes home and I just, I say I need time. I need time away. You need to take them. And Brian’s thinking, I just got, I have jet lag, I need a break. I need some time to just catch a breath and you know, I want him to be with the boys and caring for Roa. And so it took some, a lot of discussion, you know, both him and I have been to therapy separately just to work on our own feelings about having a child with needs and trying to balance the, this is my role now in life and this is primarily who we are. And there aren’t very many people that you can talk to who truly understand, but I can say that I understand why divorce rate is higher with all the stresses of special needs, but I can also, you know, put the positive spin on that. It really does take just communication, and sharing with each other what you personally need.
17:27 [Allycia Wolff] And in the end, seeing both of you and your relationship, even though in the past few years it’s been like that, a little bit of a distance. You have developed that communication style really well with each other and it seems like you are constantly reevaluating it. Like you never really into a, Oh yeah, we’ve got it. It’s easy.
17:54 [Brian Thayer] No, I think as soon as you think we got it, it’s easy. You’re going to, it’s going to slip away. We are constantly, I shouldn’t say constantly, but we talk about, we talk about it a lot, you know, probably more than other couples do. And just, you know, a couple of years ago, things were real bad and you know, it took a lot of, took a lot of work, took a lot of communication, took a lot of trust and honesty to get to a spot where we’re at now, which is, which is pretty good, I think. For me I’m more comfortable when she’s not talking to me then than it was before. I’m like, when she wasn’t talking to me before, I’m like, Oh my God, something’s wrong. And then, and now it’s just like, okay, well we just don’t have anything to say and that’s fine.
18:48 [Allycia Wolff] Mm.
18:48 [Jen Thayer] Yeah.
18:49 [Allycia Wolff] Yeah. How long have you been together as a couple?
18:55 [Brian Thayer] 15 years. 2005. 2005.
18:59 [Allycia Wolff] Yeah. That’s hilarious. Well. Congratulations. I want to just talk a little bit about how your son requires assistance to be able to go to the bathroom and to walk and to do a lot of like physical activities on his own. And so not only caregiving requires a lot of emotional commitment from you, but it also requires a lot of physical commitment. And so how have you been able to take care of your body as well as your mind and soul?
19:33 [Jen Thayer] That is such an important question and something that I never really thought about. I was a special education teacher in my past before I had Roa and you know, I knew a little bit of the toll that it would take on my body from having to, you know, lift and position and help support some of my students. But now knowing that it’s every day of my life having to lift and support and move my son multiple times during the day, you really do see just the wear and tear on your back and your neck and your muscles in general. And you know, with Roa there’s… there’s sleep issues. And so we never have a full night’s sleep any of us in our home. So we really, exercise has been key in our lives.
20:29 [Jen Thayer] It ebbs and flows just like with everyone. But just, you know, for me it’s been, I walk every day and, you know, pilates and yoga and some weight training and, Brian, I’ll let you speak for yourself, but just really making sure chiropractic care is essential in our family’s life. But it does, it really takes a toll on your body and it’s another reason why it’s so important to get that support when you can. And I think there’s a pride issue sometimes when it comes to, do we need a lift for the bathroom? Do you need a toilet chair? Do you, and you want to say no, that you can handle it, but sometimes it’s okay to just say yes, it’s time to look at a lift. And that’s, we’re in the process right now of installing a track system to help get Roa to the bathroom and into the shower, just to kind of save our bodies a little bit.
21:31 [Brian Thayer] Yeah, I agree with everything you just said. Uh, working out or getting exercise is important. Uh, both physically and mentally. Um, stretching, eating right for myself, if I eat too much junk, that really affects everything in my life in a negative way. Also, I go to therapy. I have been for two years now and, that’s not, I mean, I’m not going to say it’s not something I thought I’d ever do, but I am surprised at how much it’s actually helped me. I was going like every week to begin with. Now it’s every other week. But I think just you gotta take care of yourself and you can’t be, as a guy I should say, you can’t be embarrassed to do that kind of stuff. It’s perfectly normal and you gotta deal with the stuff or it just builds up and, and it is really negative for everybody.
22:33 [Allycia Wolff] Yeah, absolutely. You said, you said earlier, Jen, that you have to keep your pride in check, especially with like installing the hoyers and stuff because you’re gonna want to do all that. You want to do everything for your son. Can you tell me more about like how you waffle with that?
22:55 [Jen Thayer] Yeah. And you know, there’s also, um, depending on the disability with Roa and Cerebral Palsy, um, you know, when Roa was first diagnosed, it was not a very uplifting, um, discussion that we had with the neurologist. You know, we, we were told that he may not, we probably would push him in a chair. He may not eat by mouth, probably would never hold a pencil, may been tube fed, will most likely never use a toilet. We were told all the really negative things. And so Roa growing like he has and developing like he has, and gaining head control, and being able to drive a power chair and use a communication device.
23:41 [Jen Thayer] And, you know, just in the last couple of weeks he started to a fork to eat and all of those things are just little miracles that happen. And so I think, you want to be an optimistic person and think, well, maybe someday he’s going to do better and sitting on the toilet and let’s not install a lift. Because maybe there’s that hope that you hold onto that you don’t need that extra support. But you know, there just comes a time when you’re like, it’ll make our life easier. It’ll make his life a little easier, and you can always take away supports that you have added, um, is kind of the way we looked at it. But it’s definitely an emotional roller coaster of do we need this and how much do we need?
24:28 [Allycia Wolff] Mmmm hmm
24:31 [Brian Thayer] Yeah, and I, you were, you used the word miracles and I know exactly what you mean by that, but it, it, it’s a miracle based on tens of thousands of hours of work. Now the fact that he can drive his power chair is, it took us three years to get to that point and, and we have massive holes in our walls of our, and our doors. I mean, he drove right through the bedroom door of, of our house. We had to take the door down and replace it. And so it’s, it’s not, yes, it’s a miracle that he can, it’s wonderful that he can do these things now. But um, it really, it takes a lot of persistence on the parents’ part. And we’ve, and we’ve struggled a lot with, just like the, you know, the, with him, you didn’t learn how to use his Tobii eye-gaze device. We were told, well just put it on the, on the kitchen table. And he’ll-
25:26 [Allycia Wolff] And Tobii is a communication device? Because Roa doesn’t use words to communicate and like full sentences. And so the Tobii is a way to speak, have technology speak for him.
25:38 [Brian Thayer] Yeah. So it can track his eye movements as he finds words on the screen and he locks on it. It will say those words. And it’s a skill that needs to be practiced over and over again. And you know, just how long did it take us to get in the practice of putting that thing on the kitchen table where he sits so he can practice it. And we still, uh, we still know what he’s, you know, he, sometimes he talks in code and you’ve got to figure out what he says, but, uh, you know, it’s, it’s thousands of hours of, of therapy and an effort that you would, you would never need to put into somebody who doesn’t have special needs. And that’s, that’s probably the hardest part of being. Is was all the extra if you want, if you want something for your child with special needs, it’s so much extra effort and thought and emotional input and everything.
26:34 [Allycia Wolff] Mmm hmm. Just, I mean, I saw something recently, you were looking into some sort of assistive for Roa and it was like $5,000.
26:46 [Jen Thayer] Right! Yes. Everything comes with a hefty price tag in the world of special needs and-
26:52 [Allycia Wolff] It’s the price tag and the time and all those things. And I love what you said about like, yeah, it’s a miracle, but it’s a hard worked… miracle
27:00 [Jen Thayer] It is. It is. And yeah, to the typical person, a video of your child eating from a fork isn’t that big of a deal for us. It really has been 11 years of trying to get, you know, little baby Roa could not get his hand to his mouth because of his reflexes and the tightness of his muscles. So it is, it is really a miracle to us. And yeah, and just the fact that even even that eating with a fork, even though the fork is adapted, you know, with a built up foam handle for him to hold onto. And like Brian mentioned, like everything in our life has to be thought out, from the pillow he sleeps on at night to, um, how we’re going to get him into a building when we drive up somewhere. You have to think about everything in CP land.
27:57 [Allycia Wolff] What is CP land?
27:58 [Jen Thayer] Um, CP land is just what we’d call where we live now in this world of special needs. It’s…
28:05 [Brian Thayer] Cerebral palsy.
28:06 [Jen Thayer] Cerebral palsy world, cerebral palsy land, is kind of where we’re at. Our whole life kind of revolves around how to include Roa in it.
28:16 [Allycia Wolff] Mmm hmm, yeah, I see you. I see your family unit working so hard to really help Roa live a good life. And I see Roa living such a good life.
28:30 [Jen Thayer] Yeah. Well thank you. We, you know, I think Brian and I chat sometimes that I think because I was a special education teacher and I saw quite a few different families and different family dynamics. I really find it super important to not only let Roa be a part of typical kid things, but for typical kids to be a part of Roa’s life and Roa’s world because they learn so much just by seeing people who are different and who have to maneuver through our world differently. So I think it’s just a gift that Roa can give back to the world just by being out there and being a part of things. And you know, whatever we can do to let him be a part of, you know, the typical world we will do.
29:24 [Brian Thayer] And it’s partially his personality too. He’s a very outgoing person and he loves to go places. He loves to have adventures. He, you know, he loves in the summer, when it starts snowing out, and he loves to take his wheelchair through a park or down roads and get muddy and stuff like that. Then that’s just his personality. Yeah. Other son, Gunner, his personality is he doesn’t want to leave the house for anything.. video games, video games. Yes. And to get them outside to do something is it takes a crane. Um, so a lot of it is just his personality of wanting to be involved in the world and not just be at home.
30:04 [Allycia Wolff] Absolutely. If you were to think overall in how you care for yourself on a day to day basis and throughout your life, and if you wanted to share two or three tips, like if you could only share two or three things, what would they be?
30:27 [Brian Thayer] I would say sleep every chance you get. Exercise, and figure out what it is that you need, and try and get as much as that as you can. And understand that you might not be able to get a whole day of something, but maybe you can get an hour every couple of days of the thing that you need to keep yourself whole.
30:55 [Jen Thayer] The other thing that I think of is just it’s okay to question, it’s okay to question yourself, to ask questions of all the professionals that you, you will deal with. That’s a big one. I mean, you just, you’re constantly wondering what you could do differently and what you could do better. And I think that just communication with, with, um, with your family and with, with your child is it’s just so important, um, to just be able, just be comfortable with talking about everything.
31:32 [Allycia Wolff] I love that. Thank you. I think that this is a great place to wrap up. Thank you again for, for coming in and sharing your piece of this.
31:47 [Allycia Wolff] Thank you once again to the Thayer family for coming in and sharing this really important part of their lives. Um, there were multiple times in the interview where I was humbled by their vulnerability and willingness to share. I think that it will probably resonate pretty deeply with a few people. So thank you Jen and Brian once again. Something that Brian said at the very end of that interview really hit me in this conversation about caregiver care and really establishing what you need. And then he said, what keeps you whole? And so that is going to be my takeaway for each and every person listening to this podcast today. What keeps you whole? What makes you feel your best? And try to identify that it could be multiple things, but even just giving it language and thought and recognizing it can be a pretty powerful tool and bringing more of it intentionally into your life. Consider that and do it.
32:58 [Allycia Wolff] Thank you for joining us in this week’s episode of Focus on the Future. If any of this content inspired any questions for an Advocate at the Arc, please give us a call. We can be reached at (833) 450-1494. Focus on the Future is a podcast of The Arc Minnesota. Subscribe to the podcast on your favorite streaming service to stay up to date with the newest episodes. If you’re enjoying listening, please support the podcast and our mission by donating at arcminnesota.org/podcast.
33:32 [Allycia Wolff] In the next episode of Focus on the Future, I will be speaking with Dr Nancy Fitzsimmons out of Mankato University. She’s a professor there, and she has spent a lot of time building a career around how people can live and create their own good lives through not only choice but also through, um, safety and autonomy and just tune in to see what we, uh, what we have to talk about it. It’ll be a lot of really great content and how everybody in our society can encourage people with disabilities to live good, meaningful, happy lives with as much choice and safety as possible.
34:14 [Allycia Wolff] Our podcast music is composed and recorded by Micah Kadwell. Micah is a talented guitarist from New Brighton, Minnesota who also has autism. Thank you. Micah. Focus on the Future is co-produced by Chloe Ahlf and myself, and is engineered by Brent Nelson. Thank you, Chloe and Brent. What a great team we have here. Thanks that everybody ready for tuning in and we will see you next time.
