The Special Needs Mom Podcast

Things Will Get Better with Sara Davis

• Kara Ryska • Episode 271

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In this episode, I talk with Sarah Davis, a wife, homeschooling mom, and former librarian raising her 7-year-old son on the autism spectrum. We first met through The Courage to Raise, a collaborative book where Sarah shares her story of grief, hope, and faith.

We talk about caregiver burnout, learning to accept help, and how faith and community make a difference. Sarah opens up about her son’s medical complexities, what it’s like to grieve the life you expected, and how she’s finding meaning in her new season of life.

She also shares what church inclusion done well looks like and how being surrounded by people who truly “get it” has helped her family thrive.

If you’ve ever felt tired but hopeful, or unsure how to ask for help, this one’s for you.


Resources Mentioned



Speaker:

Hi, I am Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible and the dreams I once had for my life and family felt destroyed. Fast forward, past many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created the Special Needs Mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome.

Speaker 2:

Hello and welcome to the Special Needs Mom podcast. I'm very glad you're here, and let me give a formal introduction of our guest today, who is Sarah Davis and I have had the privilege of meeting Sarah in person. We met over the summer when we gathered together to celebrate the launch of our collaborative book. Let's do the formal introduction and I'll tell you a little bit about our conversation and then I will bring her on. Sarah Davis is a wife mom of two and homeschooling parent from South Carolina, a former school librarian. She now teaches her 7-year-old son who is on the autism spectrum. Sarah recently contributed to our book The Courage to Raise, where she shares her Journey of Grief Hope. How God has met her in both. She also lends her skills as an editor and manuscript formatter for a publishing company which provides her with a meaningful creative outlet. Sarah's family life is central to her story. Her son was diagnosed with autism at the age of two, and he navigates challenges. Such as being non-speaking, having M-T-H-F-R and severe mitochondrial issue with her family. Currently exploring the possibility of pans, pandas, her nine-year-old daughter thrives in her school environment, bringing balance and joy to the family. And boy do I relate to that when she's not homeschooling or editing. She enjoys reading, thrifting, volunteering with her church youth group, going on walks and spending time with family and friends. Okay. Well, I loved this conversation with Sarah. I feel like I just was so deeply curious about her experience, and also I feel like her relatability or me feeling like, wow, I, I deeply understand about where you get stuck and. Yes, I professionally meet moms at that space and we look at how to essentially move beyond where we get stuck. But I feel like there was such a, a beauty in the way that she was transparent, but so open and eager to explore the possibility of moving beyond where she got stuck and specifically. Being stuck at knowing she's at that point of fatigue and burnout as a caregiver, but not necessarily knowing how to get past that even when she recognizes she has a high level of support and people willing to help. I just thought it was such a perfect example of where some of us find ourselves. It's not as easy as just saying yes, although I am a proponent of saying yes, but it's not necessarily easy. There's a saying I love. It's simple, but not easy. And I just think she brought a rich conversation that all of us can find value in exploring, especially because we can't do this alone. And I personally just enjoyed being in conversation with her, both for my own personal growth as well as where she wants to grow and lean into. Okie dokie. I hope you enjoy the episode.

Kara:

Welcome to the Special Needs Mom podcast.

Sara:

Hi.

Kara:

All righty. I'm excited for this conversation. I was just telling you before we started recording, I was like, I just feel like it's gonna be like we have all these different topic areas that I wanna connect on, and the things that all of us are actually experiencing a special needs mom. So that's gonna be where we head in our conversation today. But before we get started, let's get to know you a little bit and for our listeners, of course, share how we know each other, which is really fun,

Sara:

Yeah.

Kara:

just, you know, kind of the basics where you're from, your family makeup, your experience being your son's mother. Why don't you get started with that?

Sara:

Okay. Well thank you for having me. I'm so glad to be here with you. so let's see. I, am married, and we live in South Carolina. we are very close to North Carolina. Like I'm from North Carolina. I always feel like I have to put that disclaimer out there. Like I claim both.

Kara:

Mm-hmm.

Sara:

moved into South Carolina a couple years ago and we drive in and out all the time between the two. so my husband and I, we have two children. And so our daughter, she is nine years old and she, goes to school outside of our home. She goes to a public school. She's thriving. She's a joy to be around. She's just so much fun and brings a lot of balance to our family because our second child, our son, and I'm gonna say his name, his name is Gray'cause you'll probably hear that a lot. he was, born two years after she was, so he's seven now. And we knew fairly early on. just the developmental gap was just getting bigger and bigger, month by month. So by 12 months I was like, red flag, something's not right here. and I was very persistent with pediatricians, that I could get him into some therapy. And long story short, our diagnosis is, autism spectrum disorder. He was diagnosed at the age of two and he is, non-speaking non-verbal, however you want to call it. that for us, that mean, I know that can mean different things for different people and for us it truly is. Non-speaking, we have zero words. we might hear like a Yeah. every now and then, and I believe it's in context, but we're not a hundred percent sure. So. kind of where we are with him and a lot of other complex medical issues that we've discovered throughout the years because we've noticed that we feel as if he's in some pain. And

Kara:

Mm.

Sara:

We've had some different doctors, trying to help us with that. M-T-H-F-R, if anyone's familiar with that. My son has it. I learned that I also have it. pretty severe mitochondrial issues. So because of that, we do a lot of, healthy whole diet for him and the family. And just recently we are maybe heading down a path of diagnosing for pans, pandas. So it's a lot. It's a

Kara:

Mm-hmm. Mm-hmm. Mm-hmm. Yeah. Well, it's like as you're explaining this, it's like, oh, and the list of diagnosises keeps growing, and you're like, I don't know. I'm thinking you look back at the diagnosis at age two and you're like, oh, well, when it was just autism. Maybe we didn't know how good we had it. which I don't say that lightly, but you know, it's like, I, I look back at early years and I'm like, oh man. Like that actually wasn't as bad. But

Sara:

No.

Kara:

it doesn't, yeah, I don't know. It's just. Sometimes, when we take a step or we, we take a moment like this to really pause and to say, wow, look at everything we are now dealing with. Like, we couldn't have even imagined this at age two. But now look at how much you manage. What was it like back when you had the debt so you knew something was, significantly, Different at age 12 months, but at two you get a diagnosis. What was it like for you to receive that autism diagnosis?

Sara:

There was a little bit of relief for sure, because I know that with the diagnosis come support, I was grasping for that at the time. You know, I

Kara:

Hmm.

Sara:

knew something was, was off and I was, you know, like I said, waving that red flag like somebody help us, somebody help us. And so getting the diagnosis, it was a complete fast avenue for, you know, EEGs to be done. Developmental pediatricians and you can google a lot of things about autism. But I will say as well, autism is so wide, the spectrum is so, so wide. And so think you get the diagnosis and for me, you know, you're reading about how wide it is and you're like, oh, but I hope it's this kind of autism.

Kara:

Mm-hmm. Mm-hmm.

Sara:

you see on TV or this like quirky kind and like, yeah, we got this. and that hasn't been our, our story as it's unfolded. It's actually kinda like what you were just saying, it feels like it's actually gotten a little bit harder the older he gets or the hyperactivity, like are we dealing with a DHD as well? So. I was, glad at the time for sure to get the diagnosis, but also there's just a lot of grief that comes with

Kara:

Mm-hmm. Mm-hmm.

Sara:

I did not even know you could grieve something that was not like actually like deceased, you know?

Kara:

I agreed. Agreed.

Sara:

I had no idea.

Kara:

Yeah. I think, let's talk about that just for a second. We won't spend a lot of time here, but I, I did a real deep dive in. I don't, educating myself doesn't sound like quite the right word, but. Investing my time and energy into understanding grief, both for my own personal need, but also so that I can support my clients at a higher level. And I think that was the, topic that I was kind of most interested in is really focusing on non death grief and because it's so under talked about, even something like divorce, right? Like that is something that is so deeply grieving, or that people deeply grieve the loss of the marriage or the life that they once had. We don't talk about grief like that grief I feel like is put in this like little bubble of like, oh, you go grief, somebody dying and then you're all better. Right? But I have learned to really appreciate that grief is, not a, a process to complete. It's not a like, oh, check it off the list. We did it. It's, it's more like. An expansion of like learning to live in a new reality now that this part of your life is different than you thought it would be. And in ways sometimes we don't want. So,

Sara:

Right.

Kara:

okay. So let's continue looking at who you are as a human being. And so I know you as an author

Sara:

Yeah.

Kara:

so I mentioned earlier that we know each other from a collaborative book project, but also you're in the world of writing beyond that, or at least editing. Tell me a little bit more about that part of your life.

Sara:

Well, I, I like to start with saying I, I'm a former librarian.

Kara:

I think that is so cool.

Sara:

Yes, I

Kara:

I love librarians.

Sara:

A lot of people do, which is nice, you know, like we're, we're welcomed people in society. so I did elementary and middle school library, also have my public library degree, but that was the avenue that I chose and I absolutely loved it. It was so, so wonderful. I did that for over 10 years. And So when our son Gray was heading into kindergarten, we just made the decision as a family that with him being non-speaking, the personal care there there's a lot under that, that my son needs help with. And me spending just a couple hours a day with him in the evenings was just really taking a toll on our family. like I said, things were getting harder the older he's been getting, and so we knew that I. I needed to probably stay home with him. It was a very hard decision. but I will say that, peace comes after obedience.'cause

Kara:

Mm-hmm.

Sara:

that. I knew, in my mind and my heart, I was like, this is my new ministry, right? Like,

Kara:

Mm-hmm. Mm-hmm.

Sara:

is where God has called me. I'm, I'm home now. It's not easy, you know, I kind of went kicking and screaming, but, It's also been really rewarding because I have gotten a lot of time with him to work on the device. We have an a, a C device that, he needed a lot of help with, which requires a lot of modeling for that. So showing him all that, but also like who I am in that. So with that said, you know, two years have gone by and I. feeling a little lost, like there's nothing for me anymore.

Kara:

Mm-hmm.

Sara:

because I love that job so much, I really miss the, the world of, you know, literacy. And so this, opportunity really did kind of fall in my lap through a publishing company. And it's, I would call it just more like freelance contract work, but it gives me a little, a little outlet. So I'm editing books, that would be doing like copy assist jobs or formatting before it goes, to be published. And so that has been amazing to see God provide something me with a desire in my heart that I really loved and I missed, but I get to do something for me.'cause it's really easy. Being a stay at home mom with a special needs kiddo to drown in that like, you

Kara:

Yeah, I talked to, yes. That is a very frequent conversation because you said it so well to drown in that,

Sara:

yes.

Kara:

it's almost like I the word suffocate in that, not to shed a, a negative light on our children, but it is a job that is never done.

Sara:

Yep.

Kara:

And I think it's like, and it's the most important job we've ever done.

Sara:

Yeah.

Kara:

it's not like we have walkaway power as like, oh, that's okay, I'll get it done tomorrow. I mean, in some cases we can do that, but, you know, when it comes to like feeding our children, like that's gonna be done today.

Sara:

Well,

Kara:

so that is amazing that you have this, this thing that fell into your lap and was writing something that you just always loved.

Sara:

Yeah, I have always enjoyed just the art of storytelling, so reading and then, writing. I never. Quite thought I would become a writer. Like this way, I guess, you

Kara:

Mm-hmm.

Sara:

my

Kara:

Mm-hmm.

Sara:

published Anything, being a Special Needs mom. If you would've told me that, you know, 10 years ago, I'd be like, what? in the world? but I'm thankful that I got to, got the opportunity to share a little piece of, you know, who I am, who my family is, and gray. and then encourage other moms or parents and writing that. So it was really cool and that's how we got to meet, which was really awesome. Which I already knew you by the way, you know, from the

Kara:

Well, you told me that and then it made me feel so like, what's the word? It just made me feel like, wow, that is so cool. I felt like I felt cool for a second. You know,

Sara:

Oh, you

Kara:

I won't lie.

Sara:

I'm still fan girl Girling here. Okay. Yes,

Kara:

Oh, okay. To just be clear about the backstory. So Sarah and I were in the same collaborative book project. Us plus seven other authors collaborated on this book and, it's called The Courage to Raise the Heart of Parenting, A Child With Special Needs. And so we all signed up for this project, not knowing who was a part of it. Then we're dumped into a Facebook group, to connect. And, she had mentioned, oh my gosh, I listened to your podcast. And what's interesting is I actually, I was a yes to this book project for a kind of a probably different reason than most, I am not an author. I'm not somebody who has aspired to be an author yet. Now I'm twice published in books like this, which I think is funny, but for me, it's about having a reason to come together in relationship. And that's why I went all the way out to North Carolina in person is because I feel like it's kind of what I mean. These connections are what drives me, what inspire me, what grounds me, and so. I'm so glad I got to meet you.

Sara:

I know. Me too. I'm so glad we met.

Kara:

So your chapter is called The Real Adventure, and

Sara:

yeah.

Kara:

I wanna talk about your chapter and kind of get it behind the scenes, but before we do, I wanna start by reading the first, like one and a half, two paragraphs, because I feel like you articulated an experience that I think a lot of us have had so well. I should have had you read it, but you know what we're gonna start with what we're doing. It was the last day of our family's week long summer beach vacation, a trip to the Carolina Coast with our 8-year-old daughter and 6-year-old nonverbal autistic son looks more like a relocation than a vacation, but a change in scenery is always welcome. As the four of us made our way to the beach front for the final day, I felt exhausted and defeated, but not just because of the weighty bags I carried overflowing with towels, sunscreen, and sand toys. Our time away had included multiple meltdowns from our sun, including outbursts of aggression. Toward himself and others. His behaviors had become our norm as they've always been his way of communicating due to his severe language impairment. Still, we never quite know when or where an outburst may occur often, leaving my husband and me on edge. And so I'm gonna stop there because. I think that's a great, launch point to kind of hear about what inspired you to write this chapter and kind of dive a little bit more into that.

Sara:

Yeah, so that was last summer and. yeah, it was a really hard week. It was a very hard beat week. It was that last day, and honestly, just ready to go home

Kara:

Mm-hmm.

Sara:

to normal. Sometimes being in our own home is just the safest place.

Kara:

Mm-hmm.

Sara:

being in a new place, a new bed for my child, is hard. All of that is hard. New place, everything. especially on vacation, because you want to do things you wanna. You know, go out as a family and try restaurants and do all these things. And that's extremely hard for our family. now on a really good day, my son is having, you know, we might, we might make it, we might get to do some things. but that week we had not, it was rough. And, but you know, we tried, we tried to do things as a family and so we went out to the beach and it was that day that, and I get more into the chapter and I don't wanna give it all away, but. he did fall asleep. My son fell asleep on the beach, which was like unheard of. It was like a gift, a true gift.

Kara:

I was gonna say and very welcome.

Sara:

I needed it, you know? as soon as that happened, someone from behind me, a stranger, came up to me and approached me and launched right into. A story about autism, and it was a little jolting. You know, I'm, I'm not gonna lie, I was just like, I just need a break. But that encounter really was what I believe was a pivotal moment, in my faith, because while I was talking to a stranger, for some reason, you know, she wanted to interrupt me, but it was an interruption I think, from the Lord that I needed.

Kara:

Mm-hmm.

Sara:

And there's more in the chapter about it. But, helped me breathe a little easier and just know that I'm seen by other people, like strangers and also like my heavenly father, he's watching after us. And there's a lot of hope, whether that is, you know, here on earth or, or in heaven, you know.

Kara:

Yeah, and I think the message, again, not to give the whole chapter away, but the message that she really wanted to impart on you was that things will get better.

Sara:

Wow. Yeah.

Kara:

And I think a lot of us can mistake, things will get better as though actually the things that side of us will get better. But sometimes, and this is my experience as a, as a mom who has parented a child with cancer.

Sara:

Mm-hmm.

Kara:

'cause the cancer did not get better.

Sara:

Right.

Kara:

I mean, in terms of, just to be abundantly clear, he is, not currently fighting cancer, but let's just say things did not go back to the way they were before. So the outside external circumstances don't necessarily always change, but it's that. We are better supported. We are held in those spaces and that's why things get better.

Sara:

Yeah.

Kara:

learn how to cope. We learn how to grieve. And I, I say this very clearly because I had mixed it up for so many years, and I was really mad about it for so many years. I was like, how can I be grateful for this life?

Sara:

Right.

Kara:

am not grateful. I'm not grateful that this happened to my kid. But then when you recognize, oh, but I am grateful that this many people came forward to support us.

Sara:

Yes.

Kara:

You know? And so I, you know, kind of am on a little bit of a tangent, but you know, for you, this encounter with this woman is like, oh, this is a little awkward and comfortable, and like, how dare you just come up and talk to me. But also thank you for coming up and talking to me and, and sending this message to me,

Sara:

Yes,

Kara:

message to me.

Sara:

with her on Facebook and told her several times like, you know, thank you. And I let her know about the book. And you know, in our conversation that day,

Kara:

Oh, that's cool.

Sara:

and there wasn't anything super spiritual on her end that she said, or anything. It was. was something going on in my heart, you know, because

Kara:

Yeah.

Sara:

is a process like as a mom, you know? Yeah. Things may not be, ideally get better to my expectation. Right. But things happen in my heart. It's just that ongoing process of working through the grief, learning to support other people, taking the support from other people and, kind of just pausing to say like. Things are still good. Things can be good and hard at the same time, they can

Kara:

Mm-hmm. Mm-hmm.

Sara:

trying to find the good in every day and not, you know, like you said, suffocate and, all the things that aren't going the way that we want. I.

Kara:

Totally. Well, let's talk about the every day. And something you and I talked about, or you had shared prior to this recording is, you know, all the support, is great. but like it requires a lot of energy and time to navigate it and that. Support can be taxing. So first let's start just kind of what are you currently experiencing in the everyday in terms of, your relationship and the tactical practicals of the outside support?

Sara:

Yeah, so we have, probably 30 plus hours of therapy that my son is in. some of that isn't in my home. So I have people coming in my home. I have had to learn to let go of having a super clean home

Kara:

Mm-hmm.

Sara:

you know, perfection when it comes to what my house looks like or what I look like, who cares, right? so there's a lot of support though that, that is taking care of my son and also helping our family navigate the behaviors and maybe a little bit of the why behind the way our son is acting. so we have that, we have great church community. They're amazing. I've got a lot of special needs moms at my church, which is wonderful, and then a lot of people who just care. Truly care, at our church. but with that also comes with, you know, we have neighbors that are the same and they love us and us in a a thousand different ways, whether that's getting my daughter off the bus because I have to take my son to therapy, you know, or, know, asking like, can I just come over and, and sit with him and give you a break?

Kara:

Mm-hmm.

Sara:

and then that's hard too for me. I don't know if it's more of a control thing. I'm, I'm trying to navigate this currently, like, is that, like I can't let go, but I also know my son so well, and I don't want him to like, hurt anyone else or someone not be able to, to understand what he wants because he's, he's non-speaking. but just navigating all of that, and like you said, like it can be, it is just taxing because. got schedules, you're dealing with people who care. And I, I don't, I don't wanna dismiss people that care because I love it. I think it's wonderful. Sometimes I just don't know what to say

Kara:

Mm.

Sara:

this life that it kind of feels unbelievable. If you really knew what was going on day. I don't know if I want, like, I'm like, do you wanna come into this? So,

Kara:

no, that's so understandable. I was actually asked kind of where I was going. Not like super coachy, but I am curious,

Sara:

please.

Kara:

is where's, I guess, what's one thing that you feel like this is going really well with? How I'm navigating the support and managing it, and what's one area that you see that like maybe is not working well?

Sara:

Well, that's a really great question. I think we have a really good balance of support through therapist, my son's therapist and our relationship is really good. I, I think what maybe isn't going well is I am feeling probably that that parent burnout a lot,

Kara:

Mm-hmm.

Sara:

I don't know how to really let people support me. People want

Kara:

Oh,

Sara:

Don't know how maybe to

Kara:

oh my gosh.

Sara:

I dunno. Help

Kara:

You put, I think the experience that so many of us, myself included,

Sara:

Mm-hmm.

Kara:

I know I need help.

Sara:

Yeah.

Kara:

But I'm a little stuck at how to get that. I know I'm experiencing parent burnout. People wanna help even, and yet, ugh, not quite there yet. or you're game to dive in, in real, in real time here. Like, just explore it a little bit.

Sara:

Yes, let's go.

Kara:

Okay. So tell me your experience of parent burnout. What are you experiencing?

Sara:

I think being with my son. much has been great, being, I would say with him the majority of the time, my husband works full time, he's amazing. I wanna give a shout out to him. but he is supporting our family with

Kara:

Mm-hmm.

Sara:

income right now. And so I am taking a lot of, not just the, the stay at home mom duties, but then the caretaker.

Kara:

Yep.

Sara:

And so for example, like my son doesn't even like for me to sit down. Okay. Like

Kara:

He's like, that doesn't work for me. I'm gonna need you to stand up.

Sara:

Right. not, I wish I was joking. Like it

Kara:

Oh, I can tell you're not.

Sara:

No. Like I will just try to sit down and he comes over and pulls my hand and just wants me,

Kara:

Mm-hmm.

Sara:

to

Kara:

Mm-hmm.

Sara:

him and, and just be with him. I think that part can feel just stifling. You know, you just feel like I don't really get a lot of breaks. therapy when he goes to therapy, it is great that he's, you know, getting. An outlet. And then for me, I know I'm choosing to do some of this editing work, but I do find joy in that.

Kara:

Mm-hmm.

Sara:

so

Kara:

Yeah.

Sara:

I'm glad that I have that. when our kiddos do go to bed at night, I am very mindful of that as well, of taking some time you know, for myself. but I always feel like the clock is ticking, right? Like kids will be up before we know it. It could be the middle of the night and. just not a, a lot of extended time to let myself just breathe and relax.

Kara:

Yeah. Definitely.

Sara:

That

Kara:

So time being one of the limiting, or like the hurdles you have not figured out how to navigate So thank you for articulating kind of what you're experiencing are some of the challenges, that you're countering as parent burnout. Now let's jump to the part where you shared. You're not sure like how to support yourself in that. So if you would share a little bit more about what you're experiencing in kind of, that aspect of it.

Sara:

Yeah, I, I don't know.'cause I feel, on one hand I feel like I'm doing what I can, I'm doing the best I can with what I have and with the time that I have. I, I think the root of it too is just. In the position I am with my specific son because I know everyone's journey is different. But like I said, like I can't even sit down. I feel like I've lost a lot of things along the way.

Kara:

Mm-hmm.

Sara:

I can't sit down and read a book. And I know a lot of this is motherhood in

Kara:

Mm-hmm.

Sara:

but you know, as your kids get older, you think things will get maybe just a little bit easier, and I see that happening around me. and I'm like, oh, that's, that's not me.'cause we, I cannot take my eyes off my son when he's awake.

Kara:

Yeah.

Sara:

and then if he, like I said, like if he's at therapy, I always feel like the clock is ticking. Right? There's always something to, to get done. even if I take a moment to breathe and do something for myself, my reality's gonna come right back. It's coming. You know? I don't know. Did that answer the question?

Kara:

does. No, I mean, I think there's not like one answer, right? There's not this answer we're gonna find out there. You know, what we're doing right now, together is just like, we're, we're observing, we're noticing, we're being curious about the different aspects of both. What you know is, Hey, I'm kind of pushing up against parent burnout.

Sara:

Yeah.

Kara:

I see that. I know that I love where you went to and, and I'm doing everything. I know how to support myself. The way that you shared that. I experienced that you're having grace on yourself to not like, be very demanding of you should be doing better. It's really more like, oh, I am, I'm doing the best I can, which I think is a great start. and there's this aspect of, huh, you've put one foot after another to do what needed to be done, and now you're recognizing, oh, and part of the, the byproduct of that is I miss parts of myself, or I miss experiences like a. I think it's such a great example, like I miss being able to sit down, period. And that's a good one because it's so like, well that's very reasonable to like want to sit down and where my mind kind of went, And just, you know, full disclosure, this is not a full coaching session. We're not necessarily coaching, we're kind of just having a coaching inspired conversation. But where my mind went, is to really like separate out your different roles and identities and look through the lens of what it looks like to support you in different roles. So. I wrote down caregiving as a role slash identity homemaking Role slash identity woman. Same editing, same. Now. Editing's one. Oh, that one actually, yes, I'm giving, but actually it's like a neutral one where I'm, I'm receiving too'cause yay there's some money involved. But also like, it's where it's I'll call it emotionally neutral, where You would have to verify this is true, but it's not a highly stressful situation. It's actually kind of an outlet for you is what I understood.

Sara:

yes. And I chose that. And I

Kara:

Yeah.

Sara:

like you're juggling a bunch of things. I, I could say no, I, I know that, you know, I could say,

Kara:

Yes.

Sara:

I can't do this. Especially'cause it's more freelance contract. So that one, yes, there's like no pressure.

Kara:

Yeah, and I think it could even be a useful model to recognize how you relate to your editing role, to borrow thoughts that you have about editing over into, I'm gonna pick on your caregiving role.

Sara:

Okay.

Kara:

And on one hand I totally recognize it's not optional, but then I think it can be a useful exercise to actually say it is optional. In a purely fundamental sense, you could, if you chose to surrender your son at the fire department, I know that you're not gonna choose to do that, but you could. It is an option that one has in our country. And so when we recognize, oh, this is an optional job, I'm signing up over and over and over again, it can help change our relationship to it. I also think recognizing the caregiving role as an entity of itself, as in if you were to go into chat and say, Hey, this is a job I have, this is the requirements, this is the hours. What kind of, I don't even know the question, but what do you suggest on what the person that's doing this role at this level of time commitment, how do you suggest that they take care of the care of themselves so that, they can do this job reliably and consistently and with the patience that it takes to do this job? And I just think it would be, that would be really fun brainstorming activity actually. But it also kind of depersonalizes, is it? Right? Like kind of when you have a robot speaking back to you with ideas, you're like, oh, I never thought of it that way. but I also think to, to really recognize it, that is a distinct role from your role as a mom and to. Consider what it really takes to support somebody that is working at this level. And I, I'll stop to kind of hear what, what are your thoughts? What are you thinking about as I'm brainstorming these ideas?

Sara:

I, I love this, I love where you're going with this because in fact, I, I have made a little bit of progress in this the past couple, year or so, you know, coming home to stay with my son because I've realized. I have felt more like, like, this is my job. you know, I always feel like it sounds selfish to say, I wanna sit down,

Kara:

Mm-hmm.

Sara:

a book, you know, I want to do, I wanna spontaneously, you know, do this night or whatever. but within a certain hours. That my son is awake, and within those like therapy hours and all these things, I have had to really stop and say, you know, of course I'm not gonna edit during that time and you know, I am going to get off my phone during that time. This is not the time to budget our checkbook. You know, when you do try to do those things, which I have before, you know, in the middle of hanging out with my son, just creates even more.

Kara:

Yeah. Recipe for disaster. Recipe for resentment, right? Totally.

Sara:

Yes. So I think trying to have that mindset every day. I mean, I like where you're going with this. Trying to really think like as, as a job, you know, taking

Kara:

But yeah, so. And then when you are doing your, your work,

Sara:

yeah.

Kara:

fully doing your work. I think that is actually very freeing too, because, and then I love your such real examples because, I do joke with myself and a lot of people of like, you know, recipe for resentment is like, you know, this power struggle of I wanna do this in my kid needs me to do that. when we recognize, oh, actually I wasn't available to do that thing. Like, my kids are a full-time job, so. Helping you kind of be fully present for the caregiving role when you are, I think then making sure you look at the other side of, oh, and being very intentional about time off. really more for the exercise of it than really maybe in reality, but like looking at your working hours saying, okay, husband's doing this role of supporting our family financially. what are our agreements when it comes to my caregiving role, and when do I get a break from that? and you know, of course, vice versa. and just having that conversation saying, Hey, like, what do you think about Tuesday nights is my, I don't know what your husband's career schedule is, but like, what about Tuesday nights is the night where I actually. Have a place I go to, I love libraries, but go, I have a place I go to where I get to do a book club. I get to, I don't know, it doesn't really necessarily matter what that is, but you know, you have a break. You can sit down and even just knowing for some of us that you have this place and time set aside to look at that recovery process can be. Really settling in and of itself. It can like almost like in an instant make you feel like, oh, okay, I can do this today because I know on Tuesday I do get a break and gives you some certainty inside of a life that doesn't have a lot.

Sara:

No, I think

Kara:

So I don't know.

Sara:

Great

Kara:

Yeah,

Sara:

I have experienced that when I have planned like that to have to have some time for myself or, I also, I volunteer with our youth group on Wednesday nights, and I always say like, I am there for those children. Those youth. I, love them, but it's also for me, like, it's been a, a great way to, to push away the special needs mom, You know, walk in there and just be someone different. And my husband does the bedtime that night, or grandma comes over and helps, you know, and I will say, a lot of times that gets me through the week. Like I'm like, oh, Wednesday's coming, you know? But I think other times it would be good for me to plan that where I go away and it's just me, you know? Or it's just some

Kara:

Yeah. That's such a great example though, because a lot of us get real. Confu, baffled as when we talk about Russ as a mom.'cause we're like, well, I don't wanna go sit on the couch. That doesn't sound fun to me. That doesn't even feel like it would be the thing, but like for you going to. Volunteer at Youth Group is rest. It's restorative it for you allows you to express different parts of who you are. even though it is giving it, it is, you know, you are generating for other people, it has a way of filling you up, which I think is such a good example. so, and here's, I'm gonna put in a plug for an organization called We Are Brave Together. I actually just got. Done, speaking at a retreat up in Tahoe. And so we are brave together, puts on retreats throughout the year for special needs moms. That's, that's, they do some other things as well, but that's kind of their primary way of serving this community. They do a phenomenal, I mean, if I do say so myself, like they do a phenomenal job of bringing in speakers and host. I mean, the pe, the wo, the women that do the hosting are just like over the top and generous and. just beautiful locations, but also very affordable. They have scholarships, so you're like, okay, if I can just get there. they do usually do two or three scholarships per retreat so that moms can access it. and yes, it's still hard to overcome the hurdle of figuring out how to be away for a whole weekend for a lot of us moms. But, I will say. I don't remember exactly the numbers, but maybe three quarters of the moms at this last retreat hadn't been to one before. And I can say with pretty high level of certainty that they will all be back for another one in terms of what you can experience when you really step out, for rest. But not even just that, but being around moms that really understand the daily demands of caregiving. So that's my plug. we are brave together. and I think, it's worth all of us checking out and investing in, and I myself am going to be going to another retreat for myself, in Texas was labeled and loved. Now, if you're listening to this live, you probably missed it for this year, but go follow the organization because they do an annual retreat and, I'm very excited to be around this particular group of women and to, you know, essentially be poured into. So signing up for that is, something I wanna encourage us all to do.

Sara:

Yeah, I've never done that, so thank you. I'm gonna

Kara:

Yeah, well. Yes, definitely.'cause they are primarily in California, but they are through, they, I know that they have had'em in Colorado. They just did Boston. I know they've done Tennessee. So it is, not just California. Okay. That's my pitch. I'm done. But, I wanna talk a little bit more about church inclusion done well because it's much more rare that I do hear it going well than. Hearing that it's not going well. So I want you to be a beacon of hope for us that would desire a more inclusive church community. And so I'd love to hear a little bit like what is going well?

Sara:

Yeah, so, the local church that my husband and I, started attending, I think I like to start with where like we were when we very first

Kara:

I.

Sara:

there, our very first day. Because I think this is really important if you're looking to start anything at your church, think, there has to be a culture. acceptance almost excitement that not only of these children, but the parents,

Kara:

Yep.

Sara:

because a lot of parents with special needs, and we all know like either the mom will go or the dad will go to church. They're, it's like a divided family. And that has always like really scared me. Like, I don't want that to be, I wanna go together

Kara:

Mm-hmm.

Sara:

it can happen. But anyways, the church that we found, I'll never forget the very first Sunday. I'm also very open. I encourage parents to be open about your child and your diagnosis as well. Don't hide behind it. they need to know what's going on. And, anyways, we, the very first staff member that we encountered was honestly so excited to hear me say that my child has autism and not speaking.

Kara:

Mm-hmm.

Sara:

thought he didn't hear me. I was like, I'm sorry. I'm

Kara:

You're like, you must not have heard me. Right.

Sara:

I'm gonna my child off you. And he doesn't talk. And he gets mad when you don't figure out what he's his, you know. They were wonderful and they have been ever since then. They, honestly, more people at my church know my child's name than probably my name. he like kind of roams the halls. He has a buddy, so they have a buddy system. so recently they hired, a disability inclusion staff member. And I would highly recommend that if you could advocate for that. this was kind of years in the making our special needs ministry continue to grow at our church. And when you have 30 plus children, and I say children as in children and youth, that, and adults that have special needs. S know, it is really great that there's someone on staff that is getting to know the families, very personal, like one-on-one, taking you out for coffee, getting to know you, getting to know your child. So I think that's very important. And it could be a volunteer, this could be a role

Kara:

Mm-hmm.

Sara:

would like to pick up if, if anyone knows someone that has that desire in their heart. And so with that person, they are walking the halls, they are checking in on the buddies on Sunday mornings, Wednesday nights, and it's just been a beautiful picture of acceptance and just

Kara:

I know.

Sara:

you know.

Kara:

I know, and I'm glad at least one church is getting it right because it is discouraging, I have to say it is discouraging because it's, I believe, I'm like, it's the heart of who Jesus is. And like if you look at his ministry, it's like, who did he

Sara:

Mm-hmm.

Kara:

to? He'll hang out with. It was the second disabled, so I feel like, okay, so you hit on this, this culture of acceptance. It sounds like it was in existence prior to you arriving. Where based on what you know,

Sara:

Mm-hmm.

Kara:

what's your sense of how they came to be that way?

Sara:

Yeah, so I mean, the church has been around for over a decade, maybe longer than that. And, my understanding is honestly, I just, I think there's a lot of wonderful people there. Just really, really, really great people. But, there was someone who was not on staff. Volunteer type of role. Who noticed? this person actually, had a background with special needs,

Kara:

Mm-hmm.

Sara:

special setting education. Saw the need and was the one to start kind of getting the ball rolling with getting people paired with a buddy and talking to the parents. That's kind of where it started. So, and I kind of love that from what I know, that's how it started. And I love that it's like one person. Saw the need and honestly it's grow. I mean, that just magnified, you know, because the energy of acceptance that one person and then the buddy, a lot of times the buddies are youth. You know, we can learn a lot from teenagers. They are, are some of the best buddies, honestly, at our church because they just love, they love the children and they love the youth and they. not really even like seeing a child for a disability.

Kara:

That is like a really great point. one, so le my son Levi participates in a basketball league

Sara:

Oh,

Kara:

that has a buddy system and it's so cool'cause it's like so many of these kids are volunteering and like, I think they're equally having a fun time as, you know, the, the basketball players. So there's that where I'm like, I totally see that, but now I'm even picturing myself. So I, I stepped up as a buddy, so I am all signed up now to be a buddy. one weekend a month. I mostly think it's a good idea. I'm like, do I really have time for this? but I'm like, I'm so committed to like, okay, I wanna be part of this. And so I've only gotten as far as doing an observation, but I thought at the end after of observing, I wasn't really like necessarily responsible for anybody, but there was a couple kids that, how do I say this? Did just didn't wanna do what they were being told and at the end, and I have no idea if they had disabilities or not. And at the end, I asked myself the question. What is the goal we have for them here? Because actually there was some, some other adults that were like, here, Johnny, you gotta go sit in the circle. And in my mind I'm like, but does Johnny have to sit in the circle? Because is that, are we looking for compliance here? Are we looking for order? Are we looking to like just be with people? Because maybe Johnny's just not big on circles and maybe that's okay for church because you know what, it's maybe not okay at school. Or maybe it is, I don't know. But it just had me really question like. Okay, so the whole reason for the story is like, I think kids would be much better at that job because I was this adult thinking, oh, well you should do this thing. Until I kind of question myself, and that's why I'm like, I think kids would actually be much better at this job.'cause they'd be like, yeah, let's go play Johnny. This is a boring message anyway.

Sara:

I know, I know. Half the time my kid is literally like, I think walking the hall with the buddy, right? Like that's what I hear. They

Kara:

huh. Yeah.

Sara:

they love it together. My son rides in the wagon or walks around and yeah, they're having a good time. You know,

Kara:

Well, I'm,

Sara:

our children where they are

Kara:

yes.

Sara:

them to like sit or be a certain way

Kara:

Yeah,

Sara:

very

Kara:

exactly. Yeah. And so that's where I think as adults need to maybe practice that skill, myself included a little bit more.

Sara:

really

Kara:

well, thank you for the. Case study.

Sara:

Yeah. Well, I also

Kara:

for,

Sara:

can I add something about the church? when I was new to the church and I heard like, oh, there's all these special need moms. I was the one that was. at the time, my son was three, and I just, I was overwhelmed and honestly couldn't even have a conversation about autism without crying a lot.

Kara:

Mm-hmm.

Sara:

so I was the one going, where are the other moms? I wanna meet them., I've been saying this a lot recently to people, it's like, create what you need. If you see a need, then like you, you try to start creating it. And I did. And so we moms, we meet, once a month.

Kara:

Mm-hmm.

Sara:

we get together on a Saturday morning, and honestly we just breathe together over coffee and just go, what's the highs? What's the lows? How are your other children doing? Because we can't forget our other children. There's all of us, you know, we have other children that have needs as well of just supporting the whole family. being with those like-minded people is so refreshing. then on the church scale too, the church makes it a priority to do a Friendsgiving. Every November for the entire family of special needs. And so we all get together. That's once a year. The dads are in the room, the kids are in the room creating chaos, which is beautiful. It's, and the staff and the buddies are serving us dinner and it's, it's wonderful. So those are just some ideas, but all it takes is an idea and, and maybe other churches can get on board. There's some great resources out there too, so,

Kara:

are. Yeah. Yeah. I know my, my own church has been looking into them. it just sounds like in that community, that you have the experience of being known and being seen, which is a really beautiful thing.

Sara:

Yeah. It's so

Kara:

Awesome.

Sara:

Yeah.

Kara:

Amazing. Okay, well we almost, ended on time. but I wanna honor our time and wrap up together. Thank you so much, Sarah. This was really fun, fun conversation and as I mentioned, I was like, we're just gonna go with where the wind takes us. And I think, the wind blew well today. there anything you'd like to say or share before we do officially wrap up?

Sara:

no, just that encouragement that you're not alone. I'm here. we're, we're

Kara:

I am here. Yep. There's three of us at least.

Sara:

We're all together in this and, that, that keeps me going a lot on some really hard days. I'm not the only one. So, and thank you for your podcast. It's been wonderful to listen to.

Kara:

Mm. You're welcome. Thank you for listening. All right. Well with that, we'll see you all in the next episode.