Faith, Culture & Raising a Child with Special Needs

“Never say never in  your journey.” - Eleni Paris

Natalie and JJ sit down with Eleni Paris, a licensed therapist and devoted mom, as she shares her deeply personal journey raising her daughter Sophia, who has cognitive and speech impairments.

Eleni opens up about navigating cultural expectations, emotional burnout, and the realities of parenting a child with developmental delays—all while juggling her professional identity. From the search for a diagnosis to managing anxiety in public spaces, she speaks candidly about grief, joy, faith, and the power of vulnerability.

If you're a caregiver, a parent of a child with special needs, or simply looking for real talk about love, resilience, and finding purpose through challenges—this one’s for you.

🧠 Topics Covered:

• The emotional highs and lows of caregiving
• Cultural impacts on care in the Greek-American community
• Why self-care isn’t selfish—it’s survival
• Faith, family, and building a support system
• Coping with the evolving needs of a child with disabilities

Eleni Paris is a licensed marriage and family therapist, proud Greek-American, and devoted mother of two daughters—one of whom is cognitively disabled and speech impaired. Born and raised in Northern Virginia, Eleni holds both undergraduate and graduate degrees from Virginia Tech. She grew up surrounded by a vibrant “Big Fat Greek” family culture while also enjoying the rhythms of a classic American upbringing—a blend she considers a true blessing.

With over 27 years of marriage and a lifetime of caregiving experience, Eleni brings deep empathy and lived wisdom to her therapy practice. Her personal journey, particularly in raising a daughter with complex and undiagnosed needs, has shaped her approach to supporting families, couples, and fellow caregivers. Today, Eleni runs a thriving online practice, where she combines clinical expertise with heartfelt understanding to help others navigate life’s most personal challenges.

Social Media:

LinkedIn: linkedin.com/in/eleniparislmftllc

Website: www.eleniparislmft.com

💬 Don't forget to like, subscribe, and share this episode with someone who needs a little hope today.

#CaregiverSupport #SpecialNeedsParenting #CulturalCaregiving #ConfessionsPodcast #MentalHealthAwareness #ParentingWithPurpose #EleniParis

Transcript

0:00

Hey guys, it's your favorite sisters with the confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad, and the completely unexpected. You're guaranteed to relate, be inspired, leave with helpful tips and resources, and of course, laugh. Now let's jump right in to today's guest confession. Yay! Why are you touching me? Honestly, as a sister, it's because it annoys you. And it's true. Would you like me to sing me me me me me? That was the point. I know um you know today is such a good day to have a podcast is and we will say that the day that we were recording is Emily, baby sister Emily's birthday. Gosh, I think she's 47. Hi, Emily. welcome. Happy birthday. It's your birthday. Happy birthday. Happy birthday to you. Okay, that's how we're doing. Sorry. Sorry. Sorry. Sorry. Sing that. You know, that's going to actually probably be trending on your birthday song. Yeah, I mean, it's a very it's like snaps to it. It is. It's Trini. Okay, we got a guest today. Okay, just move on. right, fine. This is Caregiving Podcast. That's not Natalie singing, you know. This is the voice. Anyway, we have an amazing guest today. And guess where she's from? Virginia. Because Virginia's for lovers. Although she's not in Virginia right now because we'd have her in studio. But she's in Virginia, from Virginia. She went to school. Yes! Go Hokies! the turkeys I don't even want to talk about it Okay, I know. All right. Why don't you tell us about Alini because she is I can't even believe that you just gobbled up. I'm so sorry, Eleni. We'll just we'll go. I know we're going to get serious now. Not about the Hokies. OK, today's guest is Eleni Paris, and this is one of our favorite parts. We've already been talking about this for quite a time. She is a proud Greek American who grew up in Northern Virginia, surrounded by her own version of my big fat Greek. love that so much. We're gonna talk about Windex, I can feel it. I can as well. Big family gatherings, cousins everywhere, and plenty of Greek dancing in the living room. I love to dance. So Eleni also had the best of both worlds living in a typical American childhood and college life, attending Virginia Tech, as we said, for both undergrad and grad school. Eventually, she married a fellow Greek-American. I love it. Family, shared a connection. Well, get ready because their moms are from the same island. So let's get started. Okay. Eleni and her husband have been married for 27 years and are raising two daughters with beautiful hair. I'm gonna toss that in there. Their youngest, Sophia, is cognitively disabled and she's speech impaired and has been the center of a caregiving journey that Eleni describes as rich, beautiful, challenging, and deeply spiritual. Sophia's delays were gradual inch by inch, making it hard to predict what lay ahead. from the slow realization of developmental differences to becoming part of, this is interesting, NIH's Undiagnosed Disease Program. I think we'll probably talk about that because I don't think people know about that. even there. Yeah. Eleni and her family learn to adapt, celebrate, doing all that stage by stage. Caring for Sophia requires constant supervision, navigating behavioral challenges, and understanding that their caregiving role is lifelong. Today, Eleni channels her caregiving journey into her work as a licensed marriage and family therapist, supporting caregivers and families who face similar challenges. You know what? You're going to be so sad that you didn't get to talk to Alini first because we're again besties. We were besties. Yay. Welcome to the show Alini. We love you. You're already a sister. Yeah, she's best friends with everybody. you. Thank you so much. Guys, I'm so happy. And I already had to see, was so much fun that Natalie and had a chance to chat. I already felt like I got to know JJ already. And there you go. I am so nice of you. would like you better than me. It's true. I'll send a card. Both amazing. Thank you for having me. Absolutely. So, you we love I love that you reference my big fat Greek wedding because I think culture impacts care too. And where I feel like we're going to go wherever the wind blows us today. But let's start from the beginning like you were born. But tell us about kind of like kind of bring us up to speed up to when care started. So tell us a little bit about your background and then walk up to care. Okay, it was amazing because I was just hearing you read it I actually got teary-eyed just listening to what I wrote to you guys because it is very it is very emotional and spiritual and All of that so yeah, so to back up so I was born and raised in northern, Virginia My parents are my parents like my father was deceased now 12 years But um they were both born and raised in Greece and came over later in life in their teens and Actually, I was born in DC, but then at about two or three years old they bought a home in northern, Virginia and And I realized I was there most of my life, obviously, until I went to Virginia Tech, which is in little southern Virginia. And then I even went to graduate school, Virginia Tech, but they had a Northern Virginia branch. most of my relatives landed in the DC area. So people brought over their siblings. And so I was raised with, you know, my cousins in the area, both sides of the family. had beautiful gatherings, like I said, great celebrations, a lot of love, a lot of support and very Greek. Actually, it's a Greek flag outside the house. Please tell me you did. No, we should have though because I think some bright blue shutters though like we had some good blue from the blue flag. yeah, we did. Yeah Now any siblings? you had statues too. Little like my dad was a beautiful. So my dad worked in the restaurant business, but he also had this beautiful creative side and he landscaped our yard. We had almost an acre of land, gorgeous landscaping. And of course we had these lovely statues here and there and I love you. love you and everybody's sitting there thinking, my God, you had an acre of land in Northern Virginia, you're bazillionaires because we know that land is primo. Let me explain. I'm so glad you brought that up because I'm from McLean, Virginia which is even a little bit because a lot of the Politicians used to you know, or they still do I guess but The started there and but when we moved there it was more farmland. So this is back in the day now We're talking the 70s. That's like, you know, yeah Take myself here, but in the 70s, um, it was mostly farmland. It didn't become McLean. Yeah until later Yeah, so that acre land, you know that was from from way back when Now, do you have any siblings? Yes, I have an older brother. I'm very close to and he's still in Northern Virginia. My sweet brother, Costa. that. And you're the baby, is this what you're saying? You're the baby? Are you the baby? All right. I love that. So it sounds like ideal. Like I wish I'm like, if you could talk to your mom about just adopting us in your family, we would like that. We love baklava. We love baklava. We love any of the food. I'm going to tell you that. so you go to school, you go to Virginia Tech, which go Hokies. You have and you go back to Northern Virginia, get your graduate degree. Tell me about like when you meet your husband and then let's walk up to care. Okay, well, this is a really sweet story. My grandmother in Greek is they call grandmothers, yeah, yeah. So my yeah, lived in the area. She lived with my other cousins, but on the weekends, she'd come to our home. She was very important to me. She was a big spiritual role model to me. We were very close. And I'm telling you this because I met my husband at her funeral. yeah, so it was We really feel like she brought us together because I was really really close to her and my husband at the time was a pastor's assistant like with the youth and the church so and he was looking to become a Greek Orthodox priest so Anyway, long story short my aunt pushed me to sit at the table. No, it's I'm sorry that she pushed him to sit at the table with all of these single cousins Your aunt already. She's like our Aunt Jane. yes. Yes, she's amazing. My think I did enough. She's amazing. She pushed him to sit at the table with all of us and he sat next to me. And, we had this really beautiful conversation and, you know, long story short, over time, I saw him more and more at that church and and unfolded from there. And but he happened. So in our in our faith, you have to be married first before you get ordained. So we were married and then he was he became a Greek Orthodox priest. I didn't know that. Yes, and I had gotten into my graduate program too. So when we first got married, we became ordained. I went into graduate school. We were able to stay in Northern Virginia near my family, which was a blessing because that doesn't always happen. Lots of times people get moved right away. We were able to stay there for the first four years. So we were able to enjoy my family, which was beautiful. I love that. Let me ask you a culture question because I'm always interested in this. So I heard you say your Yaya, she's at your cousin's house, but then she's at your house on other weekends. Is it always in Greek culture, is it very important to take care of the elders? Would you ever have said you're going to go to assisted living or when you're at that point, or is it just known that you're going to take care of your family in home? That's a good question. Yes, I would say from Greece, culturally, especially back, I mean, going back generations, they typically would have been home with their family as long as possible, for sure. And then I think as the generations became, let's say, I want to say more Americanized living in the United States, and there were times that maybe they realized they couldn't, they'd try, they'd be more open to help. But my Yaya lived with, you know, all of us until she died. She died in her sleep peacefully without any known ailments that we were aware of. I love that. It's because she is so healthy, I'm sure is what it is. It's the Mediterranean diet. Yeah, she was amazing. She was amazing. Um, and and she didn't really want she didn't want us to really care for her I she wanted to be able to she didn't want to be a burden on anybody. So she always wanted to be very Self-sufficient and keep cooking for us and helping us and do all of those things I would say, know soon before she passed there were some things I remember to come over and I'd help her with and I realized that things were changing a little bit, you know Mm. It was my pleasure if I could help her because she did she did so much for us. It was you know, I love it culture. Well, and every culture is a little different. You're right about the American being American, Americanized, if you think about it. And so and here's the thing. There's nothing wrong with going into assisted living. Let's make sure that all of our listeners hear this. You know, our mom was in assisted living and skilled nursing because there's it depends. The family dynamics change and it's very different. And that's OK. Don't beat yourself up. But the reality is, is respectfully, we do know people age better in the home and community. just. They just do if you can do it. Now mind you, I told my husband, Alini, that the moment he turned 55, when I heard about these senior living communities, I was like, sign me up. I'm going to be the youngest one there. I'm going be the prettiest girl there. I mean, I don't want to compete with the 70-year-old ladies, but some of those ladies are still foxy. So I'm like, I'm in. I'm like, three hots and a cot and get my hair done once a week. I'm in. And so just know that, Jay. Just come visit me. I'm ready. If you will. So you had Basi. Basi. you. That's easy. I can do this. It's short for Basi Likki. It makes me feel like I'm home. Yes. So you had Vasi, so you and your husband have been married a handful of years, then I'm assuming, and had Vasi. And then, seven years before you had Vasi. I'm sorry. I thought you said in general we married 27 years, but yeah, we were married four years before we had Vasi. Okay yeah. So had Vasi, life has gone along. You're going to school to be a clinician. You're working towards your licensure. Your husband is, he's doing his church deal, like his Greek Orthodox ministry. And then comes along Sophia. Yeah. Yeah. And at this point we were in Arizona. So after four years of Virginia, we were transferred to Arizona. That is when I found out I was pregnant with Basi. And, you know, it was such a joy to stay home. I was able to stay home with her and so beautiful. and Sophia was, she seemed normal when she was born, honestly, we didn't have any indication of anything, you know, that any challenges at the time, her Challenges were very I always say they were very slow and they unfolded slowly, you know It was like she was like a late she rolled over a little bit late. That was okay. She walked a little bit late. That was okay It wasn't till we realized she really didn't have many words by two and a half that you know We had more flags and then they noticed some other things about her just little things started to add up And then we realized she had challenges. So then she was in developmentally Delayed, know kind of Free school and then the classrooms should be in special needs classrooms. So but it was very slow We still you know, wasn't that we wasn't that we were in denial We had doctors that would say she's just gonna catch up at some point So But maybe in about three or four years old we did have some scares and we did have some geneticists that said she resembled certain Syndrome that were really hard you know, to digest and they would tell us about them, but they still weren't sure. So we would do testing and then we would find out she didn't have it, you know, things like that. Mm. So that sounds like an emotional roller coaster for any parent as they're trying to support their child. And, you know, I know people will be like, a lot of people want to pinpoint the why, especially for children with disabilities or different abilities. I prefer different abilities personally. so because they're different and they have she has her own skill set. And and so people want to say, well, did you do this vaccine or did you Did you do this during, you while she was in utero kind of thing? And it sounds to me like you had the same pregnancy that you did with your first daughter. Yes, and in fact I have this is so interesting. They're two years apart two years in two weeks They're both in January, but they were both born at 1 29 a.m I had to put yeah because I remember when I put out my announcements I'm like, can you believe that so I feel like I had deja vu everything my gosh. Okay, so I'm gonna take a break real quick. I can't believe I already time for break one. So much fun. Okay, dance us into the break. Okay, that was good, dancing. All right everybody, we are back here with Eleni Paris. Sophia has been born and she has some developmental delays. They've gotten notified by several doctors. They thought they had it pinned down. They still don't know maybe what that diagnosis is. So you've got two years apart with these girls. So I'm thinking you're handling these challenges and a two year, two year. age difference with Vasi. You're married. Are you working at the same time too, Lainey? Good question. I yes kind of in and out I did a few years I went back into clinical work again in Arizona and And then I decided to take a break again because we had so much to deal with with Sophia So I always say connected in my field whether I was you giving webinar. I'm sorry now the webinars workshops or You know writing publishing things like that But then my clinical world always had to kind of be in batches just depending on what was going on with Sophia do you? when you look back as far as these time periods and even now, how do you think that has impacted the relationship, the growth with Vasi? Like what was she doing while you were at these doctor's appointments and all this care that I had to go over? Yeah, with Sophia. She's so amazing. still is. She's actually trying to become a marriage and family therapist actually. that's a whole other, yes. She went into the psych field and it's really exciting to hear her passions all on her own. This is unfolded, know, actually for her. But she was always, mean, Vasi was always very emotionally mature and she, you know, She just understood, I'm sure there were times it was hard. She was stuck to the side knowing we had behaviors to deal with and things like that. But my husband and I and our families, we tried to stay really cognizant of making sure we still spent a lot of time with Vasi or gave her special times with cousins or with us or things to fill any of those voids. I know we didn't do it perfectly, can't do it perfectly, but we tried to be aware of it all along. And I would say, once we moved to Florida, And Sophia's behaviors became more challenging. The gap got bigger, see? So when she was littler, if you're five and you're kind of like a two or three year old, that's not such a big deal all the time. 10, 11, 12, 13, 14, and you're still like a two or three year old, the gap gets bigger. The behaviors can become bigger, challenging. Lots of things come into play. It probably, know, Vasi could speak for herself, but I would imagine it became a little more prominent in those years for her too, you know? And anyway, so you can ask if you'd like, if you want to talk about NIH, but that's when NIH popped up. We were here in Florida. Yes. We had an amazing pediatrician and she always thought outside the box and she thought, you know, we don't really know what's going on with Sophia, right? You've gone to all these specialists and when NIH has an, NIH has an undiagnosed program you should look into. You had to apply for it. I think the first time It's not that I never made it into but they had they'd say okay, you have almost everything checked off Here's a few more specialists. need to see first kind of thing. Gotcha. And we finally got in and it was actually with hurricane Irma We were supposed to fly out right before hurricane Irma's 2017 Mm-hmm Bossy was supposed to stay home and I was gonna just go I can't remember the range But I know my husband's gonna stay home with bossy and then we found out about the hurricane and my husband said my goodness what if I have to dash out in an emergency and You need to bossy should go with you as a perfect will go up. My mom still lives near NIH. So that was ideal, right? So we get there and they're like, we're so glad you brought bossy. And he looked at bossy and said, you're a very important part of our study. We're so glad you're here. In fact, they looked at me like, course you're supposed to have bossy with you. I said, well, I mean, they didn't tell me that. know, I'm so glad that worked out so beautifully. Yeah. And so. know, Vasi got to get a tour of everything and listen a little bit about some stuff. And then she was able to meet with somebody that wanted to just talk with her about her experience. I love that. We have, because we're international, what does NIH stand for? of the National Institutes of Health. Yes, lot of people die soon. No, no, no, no, it's totally fine. I was just thinking about that because I was like, wait a second, it's not just Americans who listen to our podcast. So yeah, so equivalent to your own country's national health type group that does a lot of research. That's really what it is, is a place for research. what did they find? Because I think I want to make sure we're clear. Sophia, as she aged, she grew physically. Chronologically, she grew. but mentally and emotionally she remained at that two-year-old give or take age frame, correct? Correct in many ways. mean there was sometimes you would think she's like a teenager She wants to pick out her outfit or be little things that would come in like but yes emotionally Verbally, she's still language not much more than 18 months two-year-old so she's not all over the map it Yes, but the gap got bigger Okay, that makes sense. And so what were you guys able to find out that really potentially helped you as a caregiver? If you say really think about it, because you're a mother and a caregiver. This is different because a lot of people are like, well, you're just a mom. And the answer is, is there's so much more when you have a child with differing abilities, all the appointments and the accommodations and the which is a code for different things that you need to do to meet their needs. That's really what that. And and actually I remember when she got a little older Teenagers I'd say into 18 and maybe 18 years a little before 18, but I felt more like a caregiver I mean always her mom always be her mom right, but I really that that that really resonated with me more and Started to really because I think by that point you know your children are doing more for themselves And she still couldn't do a lot of things for herself You know so that that's when it was really even more clear at that time, but at NIH what they discovered was Well, they realize that it was genetic, but they thought it was de novo, meaning it happened in utero, not necessarily genetic. Like it came from my husband or I, even though my husband did have a younger brother with severe disability, they did not connect them. They were so different. They didn't make a connection with that. Okay. So they discovered that it was genetic de novo. They still did not have A name they thought she may have been similar to they thought maybe she could have Smith McGinnis Which I am part of the Smith McGinnis Facebook group because she's so similar I even told all the parents this is not what my daughter has but it's so similar They thought she had it and she doesn't and I learned from you and this is so supportive for me So I'm happy to be part of their group But that became that came back negative and even dr. Smith who helped originate the syndrome saw Sophia and said I think she might let's let's look into this this is possible. Hmm back negative. So they they think there's a little part of her DNA that they have found a number two that they're kind of looking into they think that that's the culprit and so those ongoing studies with that. That is so interesting. So I think I want to go the direction of let's talk about you and let's talk about how this experience over the window of time. I know that you said in kind of some information you sent, it ebbed and flowed, right? You talk about how over the years it ebbed and flowed, just as simple as that. So talk a little bit about that and how it impacted how having, I mean, children changes every marriage, right? Because focus shifts, there's adjustments and you're always going to have adjustments in your life. But how did this, what impact did this have on your marriage, on your relationship? And I would even go relationship professionally and even in the community because you guys are connected to the community differently than a lot of people. So there's both challenges and blessings to it all. I mean, it was very, very hard. There were times, and I've said this in other times, they can just bring you to your knees in exasperation. There were moments that I just didn't know what was gonna happen in our future in many levels because it was so hard in the moment. At the same time, because of our faith, I think because of our family support, our community. Prayers love support all of that. We couldn't have done it without our families, you know, they they stepped up to help us so much All of that I think helps give us a strong foundation to work through the really hard through the really hard moments and But my faith is is I think central Because because even in the moment of a challenge I knew there were a lot of blessings wrapped in it and not not to minimize the hardships because I'm not saying I always felt it But I always tried to seek it out. so I think that that always, but I think I always felt it too because my family's, my parents, his parents, we were just a many, all of our relatives had strong faith too. And I just think that that all poured into the whole process. So what does that support from your family? Because you're not living up in Northern Virginia with all the people. So you've had to get new people. So you've just brought more people into your team, into your extended family. Well, yes, I we definitely had some dear friends that stepped in that became like, know, aunts, dear friends to our, you know, help us with the girls. But my parents ended up buying a condo to live near us. My husband's parents bought a house, 10 houses down from us. And so we had some good old big fat Greek wedding, you know, yeah, kind of. Family support close by very close right down the street. Although my mother and father while they rented the house out most of the time But when it wasn't rented they'd come stay or my my brothers and sister-in-law's everybody would come stay and the cousins would come and That was huge. That was huge all of that Yeah. And so I know that you talk about, cause you've got, you said you wrote a blog article once about that self care is not only important, it's critical. And so when you have a child or you're caring for an individual, so I'll even make it broader. When you're caring for an individual that has a chronic complex kind of, you know, illness or disability, and you're the primary, I know that you're Sophia's probably preferred person. How do you do self-care? How do you maintain that relationship with your husband while also like how do you keep that protected? Yeah, that's a great question. I protect it big time. I prioritize it and I sprinkle it all throughout my calendar and I prep for what I don't know is around the bend because I've learned too many times in just like life in general, but I think especially in the caregiving journey, there's more to come on some level. Each stage changes and is redefined in some way. And so I keep it going in many, many ways. So It might be that I sprinkle my long walks in there, you know, yoga. My husband and I take long walks together. I schedule coffee meetings or lunches with friends. I put it in and it's all over my calendar. Besides, I mean, I'm obviously working and I got Sophia, but I'm sprinkling it in when I can to take care of myself in the moment. And I also feel like it's refueling me for what's ahead. That's how I look at it, too. And you and your husband have opportunities to go away because you've got a team built. keep coming back to it. Yes. Yes. call it now Sophia's Greek village. have a big, yeah, we do have a lot of help in many ways. I've worked on that diligently as well. I knew that at some point I just had to keep reaching out. mean, mainly, you know, our families. My mom does come and help with overnights. But we also tell my mom, we honor the fact that she's getting older too. I she's a young, young 80, but she's getting older too. And so we have to look. for more, know, too. So we have other people that step in to help us. For the overnight, it's been my mom now. We are looking and seeking and praying and working on that for the future as well with having other people in our lives for that. It's been very important for my husband and I because don't forget that my husband was tending to large communities always. Every church we've been at has been over five, six, seven hundred families at least. So we had to I mean, even that alone. Even if we didn't have the caregiving journey, that alone would have entailed purposeful carve out time for us. Then we have this on top of it. So we had to be very creative and protect it strongly. Yeah, I'm looking at JJ because I'm looking at Jake as I feel like she's got a question inside of her bed. She also has a slight concussion. I think my question I know you do. That's why there's a pause like JJ is forgetting your questions because she sort of like hit her head last week and I'm you know, it's not. It's okay. It's it's not. I'll come back to it and then I'll interrupt Natalie. I'll be like, move, it's my turn. So, you know, it's so interesting because I think that you have a career and your husband has a career. I like tending to the flock and he's got a big flock and that you're doing great things as a licensed marriage and family counselor. And but then you're also coordinating to make sure Sophia is taken care of. How do you? How do you balance all those balls? How do you and your husband like, because I think there could be, especially for parents who are new, new to having a child with disability and thinking, how am going to do this? And do I lose myself? Do I lose myself? Let's go that direction. Yes, I love that you brought that up. I'm very passionate about this. So I have a strong passion for my background. I knew from a young age I wanted to go into psychology. I knew at a young age I wanted to go into marriage and family therapy. And then I had to keep putting it on pause in some ways, the clinical space, because of my world with being a parent and Sophia and everything. The pauses, though, the breaks have led me up to where I am now. I know for a fact that I'm a better therapist now because of what I learned and grew from in my personal world, a thousand percent. So I would say to those, you know, young parents that listen, can come, don't lose faith, don't lose hope that that's going to go away. Just know that it's going to come in maybe at a different time or in a different way. Never say never. I actually used to think I was going to never re-enter the clinical space. I wasn't sure if there'd be room for that. And then, I would say, so some years ago when we were in Florida, I missed having my professional wheels turning and I wanted to help people again outside. I just wanted to do this again, but I didn't think clinical, the clinical world would make sense. So I got a job at my local YMCA as a Y, like a health coach. And I had so much fun and it was a, and it was definitely a bridge because then it started to make me think even more and more about the clinical space again. And then COVID hit and you know, a of people have those stories, but it made me, it forced me to look into it again and it was time and it was time and I love it. So to balance it, I, you know, I own my own business and I'm solo. And so I only work when Sophia is in school and I'm, and I protect, I have strong boundaries around my work hours as well. I have strong boundaries around the kinds of cases and things and things like so I mean everything I'm thoughtful I want to be very thoughtful about what I'm gonna say yes to what I'm gonna do how I'm gonna do it so I'm Realistic about my home life Mm. I like that. And this is this is a good place to take a break for a sec. We're gonna take a break and we'll be right back. All right, everybody, we are coming back with a Lady Paris. And guess what I remembered? I was so glad I knew JJ was pausing because she couldn't remember if I stood it. Well, I'm glad because this is something we talk about and I want to talk because you have really got this down pat, I think. And this is with no matter the age, no matter what the the the illnesses or the the differing ability. So I think it's important. Sophia is 20 now, correct, Lainey? Yeah. And so she like you said, you know, as they get older, a lot of people in public don't understand she may be acting out. We have the same issue, maybe with that other people, my mom, for example, we were talking with someone on the podcast yesterday that his mom maybe goes up to the children and talks too long. And we talked about, you know, when that loved one spills food or things like that and you get embarrassed. It's actually your fault. Tell me, tell me about when you go out in public, if you had advice to give other parents, again, new parents or when that when you have those types of situations that make you uncomfortable. because it other people uncomfortable. Tell me about things that you do to deal with that for people that are older. Good question because I have a confession to make with that speaking of my questions there were times I I had I did I had to because I would take Sophia out and the behaviors were so bad that I Didn't want to go out. I mean I didn't want to go out into public spaces with her I still sometimes have to be thoughtful about what those public spaces are gonna be but one thing I learned was as long as I invite I learned over time that and as she got better, you know, she ended up going on some medications as well. And I just an amazing school. I mean, there's a big packet of what brought her up to a better place now, so to speak. but I would invite people that I knew would be a good buffer to certain places. like that restaurant might work with my aunt and uncle as an example. That could work. Maybe we could do this if I invite so and so at this time of day at that place. Because I knew it wasn't healthy, of course, to just, you why she wasn't shielded because she'd go to school, right? That's like a social place for her. to not go anywhere outside of our home and school, I wanted to be able to do that again, because we used to do it a lot when she was younger. But when it got harder and those behaviors were big, I did, I did. I really stepped back for a while because it was too much. And I think that's what I keep hearing you say is, know, respectfully, I don't want to. I don't know if it's I can't do this alone. I don't want to do it alone. And I know I'm better when I have the other folks around me and who are and looking at their skill set and what did they bring to the table? Honestly, to help keep you really regulated as well. Yes, yes, it started to become I honestly it started to become a little bit more about my anxiety levels at times rightfully so because I had so many experiences of horrible meltdown somewhere that was and she was getting bigger and oof it just got so hard that yeah became you know, was like, my Sophia might have a great time. I don't know if I want to do you know, I would think about things like that. Like I don't know if I have it in me. And so I had to really I had to really think about who would make me feel comfortable to to do that. Or if we did have a meltdown that I had that support right then and they get it they'd be okay They know her they know me that it's okay. Yeah And just so you know too. I had to stop going to church on Sundays, which was really hard as First wife imagine like that was really hard because I naturally let's put that that role aside I love my faith and I love going to church, but it became so hard for her It became very hard for me to manage her And so, but the good news is that we had church, you know, online. So we could do, we could do that now. headed to the pandemic, girl. Silver lining. We've, you know, yeah, I mean, it really is. And I think that's caregiving to the pandemic brought. So it actually brought caregiving to the forefront because so many people got thrust into almost a caregiving type role. if you think about it and who and that's when you not only saw the nurses we saw caregivers the paid caregivers but then we started talking about the unpaid caregivers and that's where the numbers start to exponentially increase with people who self-identified as caregivers like I didn't realize I was that it's interesting I'm assuming with the with the being able to go to church on Sunday It was, it really leaned into overstimulation for her. was too much for her. All the people, the noise, all of that. I used to say me what and what do we expect her to what is she understanding? What do we expect her to do for an hour and a half? You know to pray and be that spiritual and silent and quiet and meditative and you know I just it was too much to expect of her and then she would act out and I'll never forget I once this is when I really hit my wall I remember I did my best to get the girls And I know I'm sure Vasi remembers a lot of this, but I'd get them ready and it was hard and Sophia would have a hard moment, but I got him out the door. I got it. I did it. We got to church and we'd be standing there and I could tell Sophia was getting anxious, which means she would turn to me and start, who knows what, pulling my hair, something to get my tent, you know, and I was like, no, no, no. And I'll never forget. had a parish council member that came up to me thinking and he said, I just want you to know, like, I don't know why you're here. We love you. We want you here, but how are you doing this? He just totally, I'll never forget, I started crying. was like, I don't know. Just to hear that from him that he noticed, he goes, just want you to know, we pray for you. This must be so hard for you. He just got it. And I remember that was a turning point for me. And I said, and I didn't think it was healthy to arrive there in that way. It was such a hard, the whole morning was so difficult just to get there. Mm, permission. mom. Yeah, our mom used say that when we would go through the fight and the struggle to get to church, we would pull into church and she'd be like, I don't even know why we came to church. There was fighting over, know, little thing. It was clothes or it was this. And she was like, I don't even know why we're I was mostly watching JJ do her hair and she was And so I can't imagine, you know, the struggle to get with what you had to get ready yourself and the two girls. can't imagine the same situation. I even. there with the behavior, you know, with like how she was feeling once we got there. But then over the years, I would I would find some quiet times or again, like I found a quiet service. I'd have a friend meet me would go. We have a monastery that's not too far from us. And I heard was really nice to go to. So I started going like once a month and Sophia loved it. It was quiet and it was it was beautiful. And I was like, OK, she could do this if we're with a few people. And again, the right help and. So slowly but surely I rebuilt trust in her and myself and the environment. I just, you know, and slowly started kind of stepping back out again. I It just seems like I love the fact that even when you you come to something and it seems like a roadblock you work and you find a way you're like, okay, let's try this and I hear an amazing support system. again, and know Natalie and I talk about this a lot support system doesn't always have to be family because it can be friends. It can be just it can be someone that's you know at a restaurant. It could be the mailman. could be the mailman bringing your mail. And so you have to really, you can look for advocates for yourself in the most random places. Oh true and you have to do that you have it I mean It's an it sounds a cliche, but I mean to reach out for help. It's it's you know, critical It's part of the self-care case and it's you know It's healthy who's healthy, but it does take trust it takes time, you know, so I understand that it's not an easy process Well, and I think the other word is vulnerability, because you have to be willing to be vulnerable with other people and not fear rejection and judgment. Because you, think you, especially with children who have behavioral challenges, I think that can be really hard. there is, you know, I knew about an incident that happened the other day and a child that was just really dysregulated because they're on the airplane and there's too much stimulation. I can only imagine trying to get Sophia on an airplane. And the seatbelt and the noise and it's tight and people are all there. And then you're like, I don't wanna cause a scene. You start becoming very keenly aware of everyone else too. It's a second set of eyes. And so I would think that would be hard. I don't fly with her anymore. We used to fly that could happen. I'm not just never say never right I don't see it happening for a long time, but we were flying for a long time and then now I have The past few times I've gone to Virginia. I took a break from going to Virginia I used to go every summer and you know we used to fly when they were little then I took a break and The last two times I've gone I've gone up with a friend I've driven up there with Sophia likes car rides so that worked out That was a win. God was like, you know, and who doesn't love a road trip? You know, I think this is important and I want to hit on this because I know we're getting towards our end of our time. This is I'm like, why don't we have an hour? Sophia is 20 years old and that number is I am keenly aware of that because of the field that I work in because I know she has an IEP, which is an individualized education plan. I know that she has protections through that IEP, through the school system and the schools that she has access to. And services change when you become 21 and when you hit 21 and you're out in 365, when you're 22, depending on how her birthday is, how are you and your husband planning now? Because I know you're a planner. How are you planning for her? to not lose. And this is the biggest thing I think any parent with a child that has had an IEP especially is that you have all access to these services. And then at 21 or 22, depending on the birthday, they've really become very challenging. what's your initial plan? Because you know it's going to ebb and flow. Yes, I've already been researching another adult day programs. You know, she's on the Medicaid waiver list. She does have Social Security. You she has those things that have come into play now that are going to help for when she turns 22. Right. But there are I'm looking at our adult day programs that are going to be similar to like a school day. Yeah. Yeah. So I've already started. Yeah, I've already started making my calls and just inquiring about them. So I'm a little prepared. Yeah, we are. We are thinking ahead on many levels. There's a lot to think about. So we have to kind of do our homework. And what I say is I get a lot of information and I just kind of let it marinate and sit for a while and then, you know, something will come up again at the next stage. But I'm trying now to look ahead for sure. It will shift. Even the God forbid question, the God forbid, because you say you're going to be her caregiver for her lifetime, also yours, you and your husband. so does Vossy say, identify as part of that plan for Sophia or what is, do you see where I'm going? Because if something happens, God forbid to you and your husband, that's every parent's fear. Yeah, so I think, okay, so we're gonna always be her caregiver in the sense of we're her parents and we're her guardians, we're gonna always care for her and we're gonna do our best to care for her for as long as it makes sense with us. Right. But we do have to be open to what are the possibilities for her care, for her future. It's a very tough subject, very tough, but it's important to face it. So we're also researching what those options are in the future for if and when that is needed. Yeah, I'm not looking for the bullet point of your thing, but those are our difficult conversations. Like it's a difficult conversation to have with our parents. Like, what's the plan long-term? We never expected our dad to pass. And then we were thrust into caregiving. And that was the one thing that I look back, like a hindsight's 2020 with our mom. It was like, I wish we'd planned differently. And sometimes it's just POA. Like we didn't have a POA. We didn't have certain things. And so I think... I think just being able to say, I appreciate you saying, be open to the alternative. And if you choose the alternative, like assisted living or congregate, for example, in our mom's case, it doesn't mean you're a bad parent. No, no, no, no, and it might even make you better. I mean, that's the thing. I want it to be, we have to look at what is best for our child or parent, and for all the big picture of everything. And sometimes it's different than what you envisioned, you know? And so you have to be open to learning. And again, this is where, you know, my faith comes in and just feeling God's nudges toward what is supposed to be, what's the healthiest for all? We have a lot to think about. in this in this lifetime, you know with Sophia, but I did want but I think you're always I think you're still always a caregiver even if you have to make that decision or they can't live with you at some point. You're still in many ways. You just may not be in the physical pieces of it or you know what I'm saying? I'm telling you, we deal with that all the time just because our moms in skilled nursing. Actually, our caregiving responsibilities shifted and not in the direction that you would anticipate. feels like I feel like there were especially JJ. JJ is the primary. Sophia loves you. My mother prefers JJ. It is JJ, JJ, JJ, JJ, JJ, JJ, JJ. Like JJ is like, I'm like, there's not enough J's in the alphabet, mom. And so there's no Natalys. And so for me, it becomes how do I support Jay? Because my mom wants her. And I think that would be the same for someone caring for someone with Alzheimer's or dementia or any neurological, neuro cognitive disorders. There are people that the person prefers. And how do you then how do you, and that doesn't make me lesser. I just feel bad for Jay. I feel bad and I'm like, check what can I do for you? And I'm like, I'm just going to massage your shoulder. That's perfect. Kind of like my husband knows that. knows as much as she loves him and stuff, he knows that I am her breath. I'm everything to her. I mean, I'm it. Well, and I understand why, because you're pretty darn wonderful. I'm going to tell you right now, I get why she loves you so much. You know, Jay, it's time for sister questions. I know. Let's do it. So we're not, was, Natalie and I joked we were gonna ask you about your hair product, but we're not gonna do that. Yeah, so yeah, we will. So here's my question. Where Sophia is now, where she's 20, what is your hope? What is your dream for her life? good question. What do you, what do you hope for? You're going to make me cry. That's OK, too. She's a really happy, happy soul. my dream for her is that that never goes away. She continues to be happy, happier, happiest and safe and well loved and cared for always. I will make sure of it till the day I die. I will make sure of it at whatever level. But that is my hope for her. That that whole combination of her happiness, her health, her safety, everything is just always there for her. I love that is paramount. All right, here's my question because it's always my favorite. What is your favorite guilty pleasure? What is the one thing you do just for you that you just love? wow, that's a tough one because I sometimes still like have a few little things. That's okay. Do what feels good to you girl boy, lately I've rediscovered some writing and poetry and stuff. So I've kind of had this little, I've kind of gone into my own little world to do some of that. So it's my own little thing. It's like a new thing that I haven't shared with too many, just started sharing a little bit. So that's a creative little outlet. and I would say all the things I was telling you before, I mean, really my walks are my therapy, my medicine, yoga. I love yoga. feel like I don't know what it would be like if I didn't have that. My time with my husband Chocolate okay, chocolate. I don't know that's something I will I actually will I was at the store the other day, and I was like this is nice I'm getting this box of chocolate for myself That's what I'm talking about. yes, yes. So you know, some good food and a good show or something and just go cocoon. I like cocooning. I've even been using that word a little bit lately. Yeah. now. You know, and the writing is a way to cocoon. If you think about almost like dissociation, like that's not necessarily a bad thing. Like think about that creative space that you're able to get to when you go into yourself and you really think, who am I and what do I love? when you say that now you're writing and you're doing the poetry, that is your inner self just kind of blossoming again. Yes, thank you. And it actually came about after doing some good cocooning. Like I took some time off over Christmas break and Sophia was busy somewhere and I cocooned and that's when it kind of came about. So there you go. I love that. Alini, thank you so much. You know what, I know that you've got a website actually. And you can, there's all kinds of resources and good stuff on there. What's the website again? I want to make sure people hear it. Yes, www.eleniparist.com. So that's E-L-E-N-I-P-A-R-I-S-L-M-F-T.com. And that stands for Licensed Marriage and Family Therapist, if you're wondering. love that. And we'll make sure that that's in the show nuts for everybody. And if you want to go and check out that website and connect with her, that'd be wonderful. Thank you so much. We have a new sister in Florida. She's going to be like, why are you here, Natalie? Why are you showing up in my house? I was like, I thought we were to walk. Because I do love yoga, girl. Please. I love yoga. It's beautiful here. I'll meet you in Virginia when I come up there. my gosh, remember Virginia's for lovers. So yes, and I'm 20 minutes up the road from Blacksburg. So that's all I am. close. Guys, thanks so much for listening in. We appreciate you. And until we confess again, we will see you next time. Bye bye. Well, friends, that's a wrap on this week's Confession. Thanks so much for listening in to the podcast. But before you go, please take a moment to leave us a review and tell your friends about the Confession show. Don't forget, visit our website to sign up for our newsletter as well as connect with us on Facebook, Instagram, LinkedIn, Pinterest, and Twitter. You'll also find the video recording of all our episodes on the Confessions website and our YouTube channel. We'll see you next Tuesday when we come together to confess again. Till then, take care of you. Okay, let's talk disclaimers. We are not medical professionals and are not providing any medical advice. If you have medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I at Confessions of a Reluctant Caregiver have taken care in selecting the speakers but the opinions of our speakers are theirs alone. The views and opinions stated in this show are solely those of the contributors and not necessarily those of our distributors or hosting company. This podcast is copyrighted and no part can be reproduced without the express written consent of the Sisterhood of Care, LLC. Thank you for listening to the Confessions of a Reluctant Caregiver podcast.