Mainting a Strong, Healthy Foundation

As we find ourselves taking on new roles and approaches to our daily lives during COVID-19, addressing your basic self-care needs is especially important to maintain a strong, healthy foundation. Julie, Dee, and Jen share their experiences as parents of young adults with disabilities and offer some simple tips and ideas to support others with their own self-care practices.

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Simon Buehrer: From the Family and Community Outreach Center at OCALI, this is From My Perspective, our Inspiring Change podcast series focused on amplifying the voices and lived experiences of people with disabilities and their families through stories that inform, challenge, and inspire. 

[MUSIC] JEN BAVRY: Welcome to From My Perspective. This is OCALI's Family and Community Outreach Center podcast. In these podcasts, you will hear from people with disabilities, their families, friends, co-workers, and neighbors. You'll hear about everyday life, their passions, their interests, their opinions. You'll be inspired. You might laugh or cry. But most importantly, you will better understand what life is like from our perspective. I am your host, Jen Bavry, Program Director of the OCALI Family and Community Outreach Center. During this episode, we will talk about the importance of self-care, especially when it comes to thinking about and addressing your basic needs in order to maintain a strong, healthy foundation, especially right now during COVID-19, as we find ourselves taking on new roles and approaches to daily lives. With me today is Julie Short, Regional Consultant with OCALI's Autism Center, and Dee Marks, Parent Mentor with Dublin City Schools. I have had the pleasure of working with these two over the years through our various roles supporting families, caregivers, professionals, and individuals with disabilities. More recently, we've had the opportunity to work together to share our experiences as parents of young adults with disabilities and offer ideas and strategies to support self-care for these same groups. We hope by taking a little time right now to continue to share our experiences and provide some simple tips, we can offer a little help and inspiration to support others with their own self-care practices and maintaining a healthy foundation. Welcome Julie and Dee to From My Perspective. 

JULIE SHORT: Hello. 

DEE MARKS: Hi, good morning. 

JEN BAVRY: It is so great to be with you two today, even from a distance as we are recording this virtually. I thought we'd go ahead and just start off with self-care. It is probably looking a little different for everyone right now. Considering everything that's on your plate and the changes to daily routines, schedules, life, what does self-care look like for you right now? Julie, what's going on for you right now with regards to self-care? 

JULIE SHORT: Well, we are definitely living in some very uncertain times and experiencing something that none of us have ever gone through before. The importance of self-care really is evident as we try to get through the fear and the anxiety and stress that many of us are facing right now. For me, with self-care, I have really tried to focus in on accepting things that I cannot change and allowing myself to know that it's okay to not be okay. It is a trying time, but I know that it is going to be really important for me to be sure that I am at my best and that I don't expect too much from myself, as well as I shouldn't expect too much from others because we are all going through this. I've just really been trying to focus in on a lot of just gathering my thoughts and reflecting on things, spending some alone time that is really necessary for me, whether it's just taking that walk that I might need to walk to my mailbox, because I've realized that even if it's just that little quick walk, it can release some of the stress and help me reset a button for my brain, to be honest with you. Just spending a little alone time allowing myself to again, like I said, knowing that it's okay to not be okay, but to do the very best that I can and not expect too much. 

JEN BAVRY: That's a really, really good point, Julie. Especially right now, it's just accepting what you can, but also trying to add in what works, what you're needing right now and the alone time. I can see many people seeking that out, as well. Definitely appreciate you sharing that. How about for you Dee? What does self-care look like for you right now? 

DEE MARKS: Well, when this first started, it was a little tricky. I have a son who's still in school, so he's in high school, who has autism, and I had to figure out that whole education component. Normally that's not a big issue because I work with him about three hours a day during the summer for curriculum, but I'm also off of my own personal work during the summer. It was trying to figure out how could I have a typical day, typical being a funny term in this situation, but one that allowed me to work with him, keep him on target education-wise, but then still work both of my jobs, which are part time from home as well. Get done in enough time that I could say everything was shut off at 5:00 PM, and then it could be dinner and I could just put on my mom hat. That was tricky the first several days getting him in that routine of staying home because he got up every morning, wanted to go to school. One of the first things I did, it sounds very similar to Julie, was I took a good glance at my internal thoughts. I decided that the best way for me to handle myself as well as my son's needs was to keep things as normal as possible for us. I decided that we were going to get up the same time as if we had went to work or went to school. We were going to go to bed the same time. That was a key because that allowed the weekends to be different. On weekends, we can stay up late, we can sleep in, so it allowed that consistency there. I agree with Julie. It was a matter of having to decide that it's okay to not be okay some days. I had to make a conscious point of getting out of that, so that way you wouldn't stay in that rut. But just to recognize that some days, I might not get it all done, and that's okay. I think the hardest part is just that uncertainty of the future of not knowing when schools are going to open back up. My son goes to doctor's appointments every week and he still has to go into the actual hospital and that uncertainty of who we might come in contact there, I can't protect him like I can at home and he's got some concerns as far as being a high risk if he would get the COVID virus. Just that uncertainty, being able to say, these are the parameters that I can control. These are the ones that I can't. But the ones that I can't, here's some pieces that I can put together to make them a little bit more in favor of being a positive. We wear our masks. We go on walks, try to go every day on a walk. I agree with Julie. There's something about getting out and just feeling like you had the opportunity to get out of your house. I think that's the hard part; is even when those of us who were normally homebodies in a positive sense, just knowing that now you can't go somewhere, there's something about that that does a little bit of a mental play around in your head and you have to get around that and say, but I can get out. What can I do? For me, I'm a giver. I love to cook. Cooking is stress relieving for me, and so I started making double batches of everything and thinking of people that I knew who either had medical conditions or were elderly and shouldn't be out. I go drop stuff off on their porch and then I have my son get into it and have him color them a picture to brighten up their day. Because for me, helping others gives me something that makes me feel valuable and that's kept my brain in the game. That's where we are. 

JEN BAVRY: Wow. You have made so many wonderful points in this process of ... like Julie was saying, accepting what you can do. But I really like the fact that you shared how you are keeping the schedule as normal as possible, what a typical weekday was like. That way, you guys are enjoying your weekends. I think for several of us and I know that in the beginning for my family, it was somewhat of a challenge to know when the weekend started, when it ended, when the week started just because everything seemed so much the same. But what you've just shared, Dee, has inspired me to try to change a few things up for us and just trying to create some more of a consistent week and then allowing our weekends to be more of that family time and changed up a little bit more. I think the fact that you also mentioned putting your mom hat on at five o'clock, or I think that's what you said. It breaks up that day a little bit where you're not feeling like you're constantly having to be on in a different way than you were before. So that was a wonderful thing to share. As you're going through these days where you have different things that are going on and new approaches to how you're doing things, are you recognizing those moments where you're starting to feel anxious, you're starting to feel stressed, you're starting to feel tired? Are you taking a moment to pause and think about those moments, even if you can't address them right then and there, but at least knowing that you're recognizing that something is needed for self-care? If so, what does that look like for you? 

JULIE SHORT: Well, I really start to recognize when I get edgy with other family members. It can be difficult when you're around each other 24/7 and don't really get that break. I can recognize that whenever I feel like I'm starting to lose my patience or maybe even that I'll just start to zone out a little bit and have to refocus my thoughts and so forth. It's good that I can recognize that. My family members will recognize that. Some of them will even say, "You might want to take your walk now!" or have that little alone time you were needing. But yeah, it's important that we do recognize when we are feeling overwhelmed and stressed. Sometimes I may even need a visual reminder. I may have to set something on my computer, like on my calendar, that alerts me to let me know that it's time for a break or time for some deep breathing exercises or whatever it is that's going to maybe help me get through that moment. But those kinds of things are helpful for me. Having people let me know that I need a break or I recognize it myself, or I have that visual that's for me. 

JEN BAVRY: It's so funny you say that, Julie, because I know my family can sense it as well when I need to have a break, and I know my husband will say, are you doing yoga tonight? Did you sign up for the yoga tonight? What are you trying to tell me? It's funny how ... But you almost you need that. You need that support there either through, like you said, the visual reminders or just your family members supporting you, and saying, "Hey, take a break." Dee, how about for you? 

DEE MARKS: Well, I'm in a different situation. I'm not married, and as I stated, my son has autism, so he is not the best at recognizing that something might be a little off until it's too far off. There's a couple of things that I've done proactively because I can get hyper involved in things, that's just my personality and then not realize the amount of stress that I've put myself under. A couple of things I've done is first and foremost, if I wake up and I feel like I really want to cook. The other day I woke up and I just started cooking like six different things. That's a key indicator to me that I need to do that. I need to just put everything else on hold, and that was a workday. But I did put everything else on hold for a couple of hours, and I just cooked. Then that made the workday go much more smoothly because that's like my subconscious saying, you need to step back and just stir some tortilla soup for a while and you'll be okay. The other thing I did to be proactive is I created a book club with some books that I've been wanting to read with a co-worker who's also a friend. Every day at 4:00, we get on Zoom for one hour and we discuss the chapters that we've read for about the first 20 minutes, but then we also just talk. That has been something that is scheduled into my life. It's at four o'clock every day, Monday through Friday, and it's something that I know I'm looking forward to. Then she's got a new one-year-old, so he always wants to get on there and talk. There's just something about seeing a one-year-old smile that no matter what's going wrong that day, everything's perfect. I've been trying to build that in. I have two other friends now that we have regular times through the week that we have it through the end of May scheduled for Zoom meetings where we can see each other, we can talk to each other. Because connection for me is like, it's the ultimate stress reliever. It's just to feel connected. 

JEN BAVRY: Yeah, you mentioned Zoom and I think we are finding that there are new ways that we can connect. There's new ways that we can take care of ourselves and have access to things in a different way that maybe we never thought we could. Doing calls virtually, connecting with people. We've been doing family game nights as a great way to connect with my siblings and their kids and my parents, and it really does make you feel really good to be able to keep those connections even if they're not in person. I think it would be great if we could share some tips with folks on maybe some of the tools that you guys have found that have worked for you. If there are any. Dee, you mentioned Zoom. Is there anything else for you that you have found, any apps or any other online things to help support your self-care? 

DEE MARKS: The number one thing I have found is that the big difference is work for me allowed me to get out of the home, and my son went to school. Being a single parent, it now means we're together 24/7. I love my son, and I love spending time and we have a great time. But there's a reality that I also need to not be mom at least for a few minutes a day. I have been blessed in the sense that he can stay home for up to an hour by himself now. Sometimes I go just take a drive. Sometimes I go out for a walk by myself. Sometimes I go to another room and I listen to music and read. But one of the big things for me as a single parent, like I said, is finding that for me to be the best mom to him and the best teacher to him, both right now. I also need to not be either of those at some point during the day. So that has been a big thing. Then finding that way to exercise because as you said, you can't really go anywhere and we've had some pretty crappy days where we couldn't go on a walk. I actually have an electric bicycle and a little indoor trampoline and stuff, and I set that up in our family room. That way, it's easy and accessible. He can go out there and jump on the trampoline while I'm on the bike or vice versa, just to make it accessible to us very quickly. Then also he does a lot of Zoom gym classes and dance offs with his friends from school, and I join in. I don't care! I might look like a goonberry, but you know what? I'm laughing and smiling just like the kids, and there's value in that. That's what I've been doing. 

JULIE SHORT: Yeah, speaking of laughter, Dee, that's funny because we are getting a lot of that here at my household. I should have mentioned earlier, of course, I have two daughters. My oldest is 20, and she is on the autism spectrum. Then I have a younger one that is 14, and she is not on the autism spectrum, and she's a very typical teenager who loves the app TikTok. She has pulled that TikTok videos out, and we've watched those. We've laughed, and we've created our own as a family. It's done a lot of good for us, is to be able to get through those stressful moments by creating some really silly looking videos of the Short family. So it's been fun. Good entertainment. 

JEN BAVRY: We talk about the importance of creating that strong foundation, and the three of us have had an opportunity to present on this topic for folks and help them think about what are those basic needs that you want to make sure you are able to keep strong to create that foundation that keeps you really stable as you are thinking about your well being and keeping a healthy self. Considering right now that probably addressing those basic needs are probably on most people's minds, how are they accessing food, water, sleep, what are some things that you guys are doing to address those basic needs for yourself? Then what recommendations or suggestions might you give others to help support them in focusing just on that part of your self-care? 

DEE MARKS: Well, actually, for me, that piece has actually been easier because I'm usually running from one work to another. I'm not someone who eats fast food. Being home has allowed me the flexibility. I always have a 22-ounce glass of water with me. I've noticed that I'm drinking like five of those a day now because it's always with me. I can tell, my skin looks better, you know what I mean? Just because I'm getting enough water, it's hydrated and it looks good. I can also say that the ability to sit down and cook a meal rather than grabbing some cheese and crackers really quickly, which is fine when you're in a rush. But being able to sit down and make tortilla soup to eat and it has plenty of vegetables in there and things like that, that's helping, too. I would say my main thing is making sure every day I'm drinking a lot of water. And I don't keep soda at my house, so that's helpful. But I do keep decaffeinated tea. Every once in a while, if I'm just a little bit more stressed, I want something warm and comforting. On those days, I'll make hot tea and sit down and have a cup of hot tea in a special mug that a sorority sister bought for me. Anything that brings warmth, whether it's mentally or physically into your life is a good thing. Then I'm making sure that I'm getting three good meals a day and trying to eat a snack in the middle of the day. It's usually like a cheese stick or handful of almonds. But I have found it to, like I said, be easier because I'm at home and it's easy access, rather than me trying to think the night before, what I'm I going to pack to take with me all day tomorrow, and make sure I'm at a place that has a refrigerator when I need it. Also being able to sit and enjoy that time with my son. Normally, he would be at school. Being able to sit down and actually enjoy my lunch instead of basically cramming it in my mouth within 10 minutes, and moving on to work on something else because that's just what my normal life was. That has helped. Because my son is physically active, he runs on the track team, and so it's important for him to keep that exercise up. It's encouraged me to keep it up. My main thing is that water, that exercise, and making sure I'm eating healthy food. Don't get me wrong. I have sweets. Every once in a while, I've got a batch of peanut butter cookies to make later today, because I'm making them for my neighbor, but I'll eat a few. But just slowing down. That has been the biggest blessing, I think, is just the ability to slow down a little bit now that I'm used to the routine. 

JULIE SHORT: I agree. Dee, I echo what you just said, as far as what we've been trying to do to meet and address our basic needs. Just like you, I'm trying to eat healthy. Our whole family is. We enjoy cooking together. That's been very good life skills for my girls to be able to be participating in the kitchen with us. But I also enjoy comfort food. I'm such a guilty person of that. But I mean, eating right is good for our mental health, but I think comfort food also does what it says. It comforts us. Although we shouldn't eat, you know, comfort food all day, every day, a little now and then really does provide you some comfort. I've been trying to sneak that in when I can because it does. It helps me get through some times. Then something else that I've really tried to do about addressing my basic needs is really just trying to stay present where we are right now. I'm trying not to think too far ahead. Because that can cause even major anxiety. I'm finding that it's best for me to stay in the here and now and really try to focus in on my five senses, what is it that I'm seeing, hearing, tasting, touching, smelling right now. When I feel myself at that stressful moment that I try to just reconnect that way and really just trying to stay present because there's so much that we can sit around and think too far ahead about and really worry about. Like we said, we have children with special needs, and just worrying about what this is going to do to them, for all of us, but particularly them. It can overwhelm you sometimes. I really try to stay present and take the best care of myself that I can. 

DEE MARKS: I think, Julie, I think that was a great point, too. I had thought earlier, and I think I mentioned it that there's just such an uncertainty of our future, whether what work is going to look like, what school is going to look like, what going to the grocery store or a restaurant is going to look like. I've actually stepped back, and I think part of it is we have to recognize if we're putting ourselves into stressful situations, and when this all first came out, I would sit down at 2:00 PM every day and see what the latest was. I've learned that's not good for me mentally because that only evolves into more what-if questions for me. One of the self-care things that I've done for myself is to recognize that I can't do that. A lot of people talk about "Wine with DeWine," and I'm like, I just need to have a wine, skip the DeWine. Then what I do is read, I go on to NBC4 or whatever, and I just read a short summary of what that meeting has because I do need to be aware if anything's changed. But that summary keeps the emotion out of it, and that has really helped my mental health. I don't put the news on, I'm trying to make sure that like you, I'm just staying in the present. What do I need to do here and now to keep myself safe and healthy. I do like the saying that I've seen all over Facebook and everywhere else, where "it's not that you're forced to stay home, you're choosing to stay safe." I think sometimes we just have to be mindful of how we're processing the information. 

JEN BAVRY: Absolutely. No. I think that's a really good point, Dee. I think that sometimes trying to take in too much information in itself can just be so overwhelming that you don't know what to think of next. I think you start to spiral. Down that hole, I guess, if you're starting to take in too much, but it's also important to have reliable sources to go to and take in the information that is helpful and needed, especially as we're not sure what's happening next, but maybe what is the next order that's coming in, and just being aware of how that impacts you. That's a really good point. I think it can be challenging for folks, especially being overwhelmed with the amount of information out there. Just don't know where to start or what to take in. You guys have mentioned this idea of things that bring you comfort and slowing down and recognizing what's going on around you and how you can process it. I'm curious, if you guys hopefully don't mind sharing, but what, if anything, has brought you inspiration right now to support yourself? Has there been anything that's really stood out? Maybe it's a conversation with somebody, maybe it's somehow connecting with another person from a distance? Has there been anything that's really inspired you at the moment to really keep self-care out front? 

JULIE SHORT: I'm inspired by watching the heroes out there who are really keeping us safe. I look and think about all these essential workers that are risking their own lives to make our daily life more convenient and that we're able to do the things that we need to do. I'm just inspired by that. I think by watching them, whether it be on the news or if I see it online, or even when I go out to the grocery store, and I thank people for their service and what they are doing. I think that that helps me try to build more resilience to be stronger because they are risking their lives and putting themselves out there for me. You have to remind yourself of that, that we are important. I know that that is just inspiring for me is to see what they're doing in the sacrifices they are making. 

DEE MARKS: I back that up 100%, and what I have found inspiring is the shift in humanity's perspective of what is a hero. Historically, it's been somebody going in there and saving a person from a fire. Today, it's someone stocking toilet paper and recognizing that I think it shifts that everyone has value. As a parent of a child with special needs, to me that's really inspiring that we've had that shift. Whether the job pays a lot or doesn't pay a lot, whether the person is behind the scenes or in front of the scenes, we're all relevant, and every piece of it is important. I think that's been really huge, that shift. The other thing that I have found inspiring to me is, I work as a parent mentor, and I remember when this first happened, and I remember that first week of having emails and phone calls, just nonstop from parents saying, I can't do this. There's no way I can do this. My comment back to them is do what's right for you and your family. The education piece, we'll figure this out. But what's right for you and your family. Step back. What's your priorities? What do you need as a family to get through this time period? Watching over the several weeks that we've been, basically on a lockdown, watching that family's perspective shift of, what is right for them and how much they are capable of accomplishing that they didn't think they were, that's been inspiring to me as well. Just seeing parents do some phenomenal things that six weeks ago, they would have never thought they were capable of, and then seeing students do it. Because I participate in my son's online education to help guide him through it, and I'm watching these kids totally step up and teach each other, and I'm like, this is cool. I've seen typical peers arrange for Zoom choir meets where they could get together and sing some of the songs they would have sang, if they had been in choir class together because they know that it's important for our kids to have that connection with the typical peers. It comes down to people. That's what's been inspiring to me, is just the people that I've been blessed to know. 

JULIE SHORT: The creativity of these people. I mean, what they're able to accomplish and do. I mean, I speak for my own daughter, but I know you guys probably feel the same way about your children. It's amazing of how well that my oldest daughter with autism has adjusted to this. She amazes me. I mean, yeah, it's difficult. Sure. It's challenging, absolutely. But she has shown me, I'm just inspired by her, the way that she has taken this and is doing the best she can with it. It's a little off routine than what she's normally used to. But again, it's okay to not be okay. My most important thing for her, for all of us is just to really focus in on that social emotional well being right now. Like you said, Dee, it's what works best for the family. What are our priorities? 

JEN BAVRY: No, that's absolutely right, Julie. I know, for my son, it was a little bit more challenging in the first couple of weeks of not being at school. He's also in high school, and he just struggled with not knowing why we weren't going to school, and we had to actually take a couple of trips over to the building just so he could see that school wasn't happening. But what we have found over the last couple of weeks is that he does seem to be adjusting more to this. Hopefully, he's not getting too comfortable with being home. More recently, with one of his interactions with his teacher, he was actually able to stay on a little bit longer, and each day gets a little bit better. It was just really great because instead of seeing the stress on his face with not understanding what's going on, he's smiling more, and he's getting those fun little teenager looks that we were seeing before coming back. I am inspired by him every day as well because just seeing him smile and be happy is the most important thing, and not having any added stress that as a parent, you can't control it. You can't control what's happening right now. You're doing the best that you can to provide and offer comfort and some stability that at least for us, he can recognize. 

DEE MARKS: Absolutely. 

JEN BAVRY: Before we wrap up, we're getting close to wrapping up here, I just wanted to end with what words of encouragement would you offer others right now if you were talking with someone and you could definitely tell that they were struggling a little bit with self-care. What words of encouragement would you offer to them, and Julie, I'll start with you. 

JULIE SHORT: A lot of what we've already said, just making sure that you're staying present, you're connecting with others, knowing that this too shall pass as scary as it is, we are faced with something that none of us have ever gone through before. I think it's important for us to recognize that it's okay to have those feelings that we might have, feelings such as, I'm scared or I'm worried. I think when we name our feelings, actually, that has been shown in brain scans that can really help make positive changes in the brain. Saying those things out loud and recognizing those feelings that you might be having, it can actually help. Again, just making sure that we're connecting with people, connecting with others, looking after one another, and just recognizing that we'll get through it together. 

JEN BAVRY: How about you, Dee? 

DEE MARKS: I agree. When you said that, my first thing that popped to mind is just step back. If you're feeling that overwhelmed, it means you're in the midst of it. Sometimes we just need to step back and to think about it that, it's a moment in time. It sounds like it's going to be a long moment, if we ever get back to what was considered normal a month and a half ago, and so recognizing that no one has a firm grasp on this. Lighten the load on your own shoulders by recognizing there's nobody that's doing fantastic at this. We're all having moments of good days and moments of not so good days. One of the things that I made a recommendation to a parent the other day who was struggling is I told her to get a jar out, and she didn't have a jar, but she had a little Tupperware container. I said, every day, when something happens that makes you smile or you feel like you've accomplished something or it just was a good thing, I want you to write it down and put it in the jar, because if you do that every single day, in seven days, you got seven things in there, and you physically get to watch this fill up, that there have been good moments. There has been laughter. There has been something that you've accomplished that you didn't think you would. I think sometimes when there's so much going on and so much busyness coming at you from all different angles with the COVID virus, trying to teach your kids at home, trying to maintain your work schedule, trying to make sure you're hitting the grocery store at the right time so they have the ingredients that you need. Trying to make sure you picked up your child's medications. With all of that coming at you from all different angles, it can be real easy to forget the little things that you just felt good about for a moment. I think those are the things that we have to try to embrace and be able to take a deep breath and exhale the other pieces out. 

JEN BAVRY: Wonderful words, guys. I really appreciate you both joining me today and sharing this information. I know that it's going to help others who are going through similar things right now, or just trying to continue, like you said, Dee, to kind of see, what are those positives that you're seeing every day and really just focusing in on that, but knowing that if something isn't going the right way, it's okay. It's okay that it's not, and that things will adjust as you move forward. Again, thank you both for being with me today and joining in on this podcast and sharing your perspectives. I really appreciate having you both with me today. I would also like to thank my colleague, Simon Buehrer, for supporting Julie, Dee, and me with this virtual podcast recording. Simon is OCALI's conference and events manager and OCALI's podcast extraordinaire. I welcome all of you to tune into the amazing episode Simon has produced through OCALI's inspiring change podcast, including The Voices, Visions, and Victories series produced during the COVID-19 pandemic. Thank you for listening to this episode of From My Perspective. By sharing these experiences and perspectives, I hope you are inspired to take the first step to support a new self-care habit or the next step as you continue on your own self-care journey. If you would like to learn more about OCALI and its resources, including additional From My Perspective episodes, please visit ocali.org.