What People Don’t Understand About This Life (Even When They Try) with Anika Atkins

This episode is a real-life conversation about what support actually looks like and where it still falls short for special needs moms. Kara and Anika talk about advocacy, friendship, community, and the quiet weight so many of us are still carrying. 

Read the full show notes here.

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Transcript

Speaker 2 0:05

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 1:14

Hello and welcome to the Special Needs Mom podcast. This morning I recorded an episode with Annika Atkins, also known as my friend Annie, and she is somebody that we talk about this in the episode, but she was one of the first moms who said yes to group coaching when I first started to offer that, and I've gotten to know her over many years, and then conveniently, she moved to Southern California, which just made our friendship much more convenient. Actually, you might recognize her from what I'm gonna say is a fan favorite, an episode several back where she talked about her experience from a her professional expertise as a medical and dental ethics professor, and I have a feeling after this episode you're gonna say, I want more Annie, and in which case, I have more for you. And so we'll link back to the episode so that you can listen to that if you did per chance, miss it. So in this episode, we very much just dive right into conversation and there's really no, I don't wanna say there's no rhyme or reason, there was no formal outline, let's put it that way. But I often think, and I actually get feedback from some of you, that you really like that, that it gives you the experience of going out to coffee and catching up with the girls. And that was a welcome thing for many of us, especially for me on this Monday morning. I know it was nice to connect with Annie, and logistically it's harder to do that sometimes. And so consider this your invitation to sit down with Annie and I as we're talking through some of the places where we still feel stuck or we feel we're in process. And before we dive into the episode, because we just again, jumped right into conversation, I'm gonna tell you a little bit more about her. So in the previous episode, as I mentioned, we talked about her role as an A professor in the dental and medical ethics, and then her daughter's medical journey moved ethics from the classroom into real life, and she lived daily inside the healthcare system, deepening her commitment to better communication, honest reflection, and practices that protect trust when it matters most. Her daughter Ella was diagnosed at three months old and she's now 12, and she has infantile onset pompei, and her particular medical profile makes her uncommon, even amongst Pompeii families. So she's rare within a rare community, and I know many of you will relate to that over the years. They've held a lot all at once. Deep gratitude and real fear, steady seasons and sudden changes. They've watched Ella thrive in hard one ways, and boy, as a parent, I think that just does something to us, right? And they've also lived with how quickly things can shift as her mom Annika's learned. How much of this life is ongoing advocacy, constant recalibration, and trying to stay grounded while the medical landscape keeps evolving. And so this is a longer episode, so I'm gonna get right into it. And enjoy. Hang in with Annie and I in this episode.

Kara 4:33

Annie. Welcome to the Special Needs Mom podcast.

Anika 4:37

So happy to be here.

Kara 4:38

Yes. This is our second start.'cause I had the wrong microphone in before. So if we sound a little more subdued, it's because, we just went through the excitement of saying hi to each other. And what we're gonna start with is just a check-in. I know Annie personally, also, her formal name is Annika. I often call her Annie. And so we're gonna just start with a catch up since we do have, a background relationship. it's a weird way of saying friendship, background, relationship. So we're gonna start with how was your weekend? Okay. Yes.

Anika 5:08

it was such a great weekend. I was excited to share it with you, but we ended up, for Ella's sake, so many times our weekends end up being not what we've planned. Ella's best friend lives in Washington state, and so trying to connect is not easy. And so we have made plans to visit and it seems like it falls through with illness. With whatever. And so I'm never 100% sure what's gonna, what's gonna come. But this weekend was perfect, like Ella's bestie, we met them for dinner, we put this plan together and we're like, we're gonna surprise Ella. And we surprised her. it was like the best moment. Her eyes were saucers when she saw her best friend. And it was just like, the whole weekend was like that. Just fun. Normal kid moments was perfect. We weathered Disneyland on a Saturday. That tells you just how dedicated we were to this. And we all had a

Kara 6:08

special needs Mom. Life is easy. It's Saturday at a Disneyland that you gotta be watch out for. No. how fun. Wow.

Anika 6:17

Yeah, so it was perfect. And I have a new appreciation for Disneyland. people were just so accommodating to getting us through and, I mean there's a whole culture there I didn't was, I'm not aware of. So I'm learning more and more about it, like how to manipul the app and all this stuff. Get through Disneyland. But in general, we just, the people were just so polite. And I think it highlighted that in our general world, people don't really acknowledge our kids in the same way Disneyland does, which

Kara 6:50

yeah.

Anika 6:50

I never would've thought that was, would exist. I don't know. Maybe

Kara 6:55

No, I think, there's Disney people and then there's Disney people, and I would say I'm a Disney person. I love the Disney people because you learn so much from them. Do you see, you know what the difference is, right? there's these people that just know everything, the ins and outs and all the things and they go all the time. I would love to go more, but I'm a little too frugal.

Anika 7:14

Yeah.

Kara 7:15

Place is expensive. I love it though. I told my kids and family like two months ago that it would be a great idea to take me to Disneyland for Mother's Day. Just be

Anika 7:24

Aw, yeah.

Kara 7:25

Be what I want. okay, but where was I going with that? Oh, I was going with, I think there's a disproportionate, in a good way, amount of people in the disability community that are Disney people. And I think it's for this, my guess is it's for this reason that it's like a place where, One, you can just go like everybody else to enjoy it, to have, this magical day. And I think it's maybe I'm realizing now as I'm talking that it levels the playing field like that we're all there doing all the things and like it's not something that we're othered by. I don't know, exactly's amazing.

Anika 7:59

Well said Kara. That is exactly it. I mean I'm still jonesing off that experience'cause we were just so taken aback. Both Shane and I were like, my husband Shane, we were just. Like in awe. And it, I don't know why we were feeling it so acutely this experience, but it was like, the attendance on the bus made that easy, getting a wheelchair on and off, and it was like, not even an issue. They took over. They, Facilitated locking it on the, and normally as a parent you're gearing up for all of that. Every step you're like, oh, but just the way they facilitated this for us Was just shocking. And I'm not sure why it was like, maybe it's because we've been in an environment where it felt like, you're just needing to fight your way through different things. get, I think the bus stuck out. I think the getting on the ride stuck out. It was like. They just had it dialed in to how we were gonna get on that ride with someone who's unstable. Can't physically get on or off of a ride, just, they really have a interesting system there. yeah, I guess the

Kara 9:02

interesting, in a good way, and I think this is why I'm obsessed with Disney cruises, is I feel like they take that same, sentiment.'cause I think it's not just that they have the mechanics down. I think that they've done a great job of creating a culture where it's like you're not at inconvenience. that's the, like the culture is that like we accommodate. and I know that there's been like changes in the DAS plan that have been, a bummer for some people in the community. But, we won't talk about that today. no, but the Disney cruises, I feel like. For all families. I think that what they've nailed. Have you ever been on a cruise or Disney cruise? I have

Anika 9:37

not. I would be up for it though.

Kara 9:40

Add it to the list.

Anika 9:41

Is it really great?

Kara 9:43

So great. we went on our first Disney cruise for Levi got a Make-A-Wish when he was little after his first recovery. And so we went on a Disney cruise. Actually, it was funny'cause his first wish was to go to Legoland, which is lovely, but what you would have to know to, it's like, Levi, you gotta dream a little bigger.'cause we, at the time we lived right down the street from Legoland and we had a season pass for like years. And so I'm like, okay, let's dream a little bigger. Yeah. so we encouraged him to wish for a family, make a wish, cruise. Excuse me. So we did a four day cruise to The Bahamas. And so it was, he actually a very transitional time for us because it was like. Right when I think I was like, okay, like we're making a turning point here. I had an 18 month old, which then if you go back and do the math, I had a child. I literally gave birth to a baby while I was helping my second, Levi learn to walk again. So let's just say it was really stressful for a lot of time. And so we went on this cruise and I feel like it was like this same experience that we're talking about where they just accommodated and our server, they have the same server at all the meals and he was just like so amazing. And I think they, I mean they do this for everybody. It doesn't necessarily, the disability part doesn't necessarily change it, but I think that they cruises in inherently are accessible because of the way that the chips are designed. And so I think it's for us, just a really great way of, of creating that space. And then I think the Disney element adds like that level of, magic. Andex expense.

Anika 11:21

I felt like a lot of the staff had been educated to see your child too. Like they really engaged Her,

Kara 11:27

yeah.

Anika 11:27

And as those parents in a way that I was like, someone's behind the scenes here, like doing a little extra. At least I felt that kind of shined through. I don't know. It was interesting. So yes, I can, yeah, A cruise would be like such a great way to ease yourself, give yourself a little ease. so your environment's a little more controlled.

Kara 11:47

Yeah, totally. And that's actually, we are gonna go. So also backstory, we as a family had a, I talked about this I think on the podcast. I don't know, I can't remember. My memory is not as good as it once was. okay, so what, we canceled our family trip to Hawaii. that was gonna be in February because my oldest son needed surgery. Which was a major bummer. so we then booked, we're gonna go to Alaska on a cruise in July. So I'm super excited about that. I think it's interesting'cause I'm like, okay, yay. The cruise is accessible. We're all good there. But now I'm like, what on earth are we gonna do when we step foot off the boat with to me, I'm like, oh, we'll go hiking. We won't go hiking. That's not what we're gonna do. I think we're gonna have to do a lot of dividing and conquering. I'm not sure. But that's on my list now to figure it out.

Anika 12:35

I will, since we did that cruise to Alaska last year,

Kara 12:38

Uhhuh Oh yeah. I forgot

Anika 12:39

about that. Amazing. The best times that we had was when we went on rented Jeeps And drove around and did our own thing. And then we'd stopped where we could, we had a couple amazing days that way. So that might be easy because you could

Kara 12:54

that actually makes me think, okay. I should probably look into that because. Some of our most highlighted family vacations were when we did something very similar. We rented, in one case it was like a guided tour where we rented, what are those things called? Razors. You know what I'm talking about? Those like dune buggy type things?

Anika 13:13

yeah. Yeah. That's

Kara 13:13

fun. Clearly, I'm very into it. I know all the details of it. okay. So we rented those and, or they, it was a guided tour and it was so much fun. So we did that in, it was Zion area and then a couple years ago, I guess it would be last summer, I don't know. It was in the last year. We did, I'm trying to think of when it was. It doesn't really matter. We rented, it was self-guided this time though, so they literally gave us the keys. They're like, here you go. And they gave us these cars and this like dusty old map and they're like, okay, we'll see you at the end. so we took a. We had one four seater and one two seater. And what's amazing about it is it is completely accessible for Levi. Like he can sit on in it. I think I did, I did talk about this story somewhere. I had a little bit of a panic moment on the way to pick up the rentals.'cause I was like, oh my gosh, they're not gonna have a helmet that fits my son's ginormous head. I'm sorry. it's like the biggest head you've ever seen. and it quite literally like we can't find glasses, that fit his head because his head is so big. I don't know if there's an opposite of microcephaly, but we have that. anyhow, so once we got the helmet on his head, I was like, okay, all is well. we will be okay. and it was, anyhow, it was so much fun'cause it was like, it got us out in the backwoods where we kind Yeah. Like we're, there's magic out there. without having to actually physically. Move.

Anika 14:30

It's hard because you gotta gauge okay, energy expenditure.

Kara 14:35

Yes.

Anika 14:35

And I, yours is different in some ways too.'cause I don't know all the logistics of how he gets around, but yeah, it's tricky. So you're thinking, oh, we like, yeah, hiking sounds amazing. Alaska is not really doable. It's, yeah. And even for us it was like some of the ones getting in and on and off of a boat if it's down. Yeah. It's not really possible unless Shane's like manhandling, which she, he'll do on occasion, but she's getting to a point where she's not comfortable with that, in terms of embarrassing in front of a group of people, having her dad lift her on and off of.

Kara 15:12

so I'm just trying to think, I'm just thinking in my mind how inconvenient is when kids have their own opinions.

Anika 15:18

I know. Yeah.

Kara 15:19

I mean it's amazing, obviously, but I've four children and they all that's, yeah. it's yeah, it's, yes.'cause one of my daughter is very spicy, so she has a lot of opinions and sometimes I'm like, okay, I love it. And also it would just be so much easier if you would just do what I said, like you were a little robot, but that would be boring.

Anika 15:40

Yeah. It would

Kara 15:40

be. Okay. So I'm okay. Back to your weekend. You, I was gonna say, you lost me at friend, not lost me. That's not the right word at all. I think it's pretty rare to have a friendship like this, like for our kids to have friends, I guess is what I'm trying to talk about.

Anika 15:54

and I think that's what's so poignant about it, is that, yeah. Oh, you like desperately wanna hang onto these friendships because you're like. It's the one we have to be honest. We have she is Ella's best friend and she's known her, since she was, pre-kindergarten, which was amazing that they connected and it's been so supportive and that family makes the effort to stay in touch. I think the hard part is, Ella's cognitively plateaued at a, like a 6-year-old and your friend is advancing'cause she is, I don't, what would you say? I don't know if Neurotypicals coming to mind because I've been reading more about the autistic side of things, but that's not at all. She is. She's a child that doesn't have any of these illnesses or disabilities. And so the special part about her though is her mother works in healthcare with people like a, retirement home community. She provides that. And so her friend has been around that, and so she understands Ella in a different way because she's comfortable about with what her mom has taught her. But that is one of the hardest things I think we struggle with, is you almost need parents that help guide the children in the friendship with your child.

Kara 17:07

A hundred percent. Yeah.

Anika 17:08

And then where do you find that though? Who can,

Kara 17:11

I will let you know when I figure it out. Yeah, Still, I'm still figuring out. here's what's interesting. So my best friend here locally, she has a sister that's a couple years older, that's part of our community as well. so she was, she's my friend as well. We're not as close. But, we were doing a volunteer day with our church. It was called Serve Day. It was super fun. So

Anika 17:32

I wanna talk about your church by the way, but we'll

Kara 17:33

talk. Yeah. Still coming along there. Okay. So we were doing this volunteer day. And I don't know what prompted it, but I think it led me to ask her the question or have the experience. And so again, this is my best friend's sister, but my best friend's very much like this, where they are more accommodating and like just generally more inclusive. Like just their way of showing up. It's like you don't feel like they're like treating you special, you just feel like you're being like known. And like also they take the initiative to share some of the load when like we're together. Like a couple years ago, this is a lot of years ago now, We went to Catalina together, and this is now with my best friend. And in just the way that she was like, okay, figured out that we could use this boat for that because, it's not as big of a step down Yeah. As you were just talking about. And just to have somebody else thinking about these things and not being the only one that's trying to figure it all out and look at those details that, we're constantly doing as special needs moms, but just to have somebody else acknowledge that and see that like it means so much. And so's a Thanks, Jess. It's

Anika 18:50

a huge gift. yeah, but, and a shout out to Claudia and Breyer who are our, chosen people. But the other thought is like, there's times when I almost wanna have a document put together that you hand to a new potential friendship. I know this sounds would never happen, it's like, how do you. It's difficult to maneuver a new friendship for your kids. Like I think for our situation, Ella, looks pretty, like a normal child, Until you start to communicate with her and then you realize their speech delays and then cognitive delays, and then energy delays or needs. And so as people are starting to connect with her, I think they start to get overwhelmed. And not knowing how to handle it. So I noticed that with kids that come up to Ellen and wanna engage with her, and then you just see them slowly trying to disengage in a way, but I'm like, How then do you help them in those moments? I don't know, connect.

Kara 19:50

I think it goes back to what you're saying. It's like it goes back to the parents that can come alongside and help teach and coach, like how to interact with somebody that's maybe non-speaking or less verbal. And and it also is bringing up for me, the kind of heartbreak that comes with friendships because of this actual, aging out's not the right word, but it's what's coming to my mind. Whereas Levi had a really good friend that he developed over COVID and this kid is just a lovely kid and I still, and he's still very well loved in our house. but he, and he has his own, areas, of, I don't know whether he would call it disability or just neurodivergence or I, I don't know how he would describe himself. But he was very open about those things and, Levi ended up changing schools and so very much lost, that kind of easy access to a friendship. And then essentially what happened is the impact of Levi's disabilities had an impact on him, on his friend, to where his friend needed to say, this French doesn't work for me anymore. And Oh, he said

Anika 20:56

that to Levi? Or

Kara 20:58

he said it. I, yeah. So this time Levi does not have his own phone.

Anika 21:02

Yeah.

Kara 21:03

And so I was doing the communication and he said it to me and again, this, it was like, it was the sweetest, kindest way and I respect him so much for being able to say what he, what worked and what didn't work for him anymore. So I, on one hand I totally understood.

Anika 21:19

Yeah.

Kara 21:19

But then of course it was like. Oh, ouch. Because yeah, that sucks. It really sucks because from a intentional standpoint, Levi would never wanna hurt anybody. But from a practical standpoint, the things that he does, it hurts people. people interpret it in different ways, and they have a different level of tolerance for some of the behaviors that he has. and so as a mom, I was just like, oh my gosh. Like that It was rough. It

Anika 21:51

hurts. It

Kara 21:52

hurts. It

Anika 21:52

really hurts.

Kara 21:54

Yeah. And then deciding, okay, how do I, and I didn't like right away go to Levi with his information. I sat with it for a little bit so that I could process it. But then eventually, I was honest with Levi about, about, the things and he understands, but also is really sad. And even every time we pass. This one building in our, in community. Levi says, oh, that, that makes me think of him.

Anika 22:18

Aw.

Kara 22:18

and so it's and we talk about him like he was a wonderful thing of the past that is no more, Yeah. and just, of course wish him with his own challenges. So it was sad.

Anika 22:28

I know. And it's hard because you, as intuitively know you can't hang on to these people forever. It's gonna It's gonna change, they're gonna grow. they're maturing in a very different way. Their lives are, progressing in all these different things, and then your child's like inching along. And so that feels really heavy at times. going back to our dream of this, of a church study where a community could come alongside and govern and guide and steward some of these I don't, parents, kids, your kids in a way that, that connection could be made. I don't know, like in a divine sense. Maybe I'm going off the rails of something, but I don't know, it's just because I'm always thinking, how do you make these connections for your kids in a setting that's, neutral, positive, fun-loving, more diverse? I don't, and that's hard to find, I think.

Kara 23:22

Yeah. And I certainly do not know the answers. yeah. So what's interesting is that, we go to a church that is considered a pretty large church, in our area for my local San Diego people. We go to North Coast Calvary Chapel, and it's in Carlsbad. Even though I live in San Marcos, I haven't given up my Carlsbad identity. Nor will I ever, so Okay. Focus. okay. So we've gone there for a long time and it's, it's coming along, maybe slower than I want. Maybe less than a year ago, but in the last year we actually, I was invited to a meeting, that the church was having that was centered around how the church is meeting, the disabled community's needs. And it was a pretty large gathering. There was probably 60 people there. and when I say large church, I don't know how many people there are. 5,000, I don't know. I should probably know that. But, it was really good meeting and essentially, the leadership of the church, the pastors were just like, we just really wanna listen. this is the, this is where we're starting. We're starting to hear. and then we'll go and see what we need or what we're gonna do from there. So I guess I was really encouraged by that. I'm, now I'm like, okay, and now what's next? what I wanna hear a little bit like of what we're doing next and as a community. one thing I do know that's in place is that there's a new person in charge of what they call the buddy system, or like the buddy program that essentially is a program designed for like first through fifth grade or kindergarten through fifth grade, to create some, support for kids that need help in their sunday school settings. which of course begs the question like, what happens after fifth grade?

Anika 25:07

Yeah.

Kara 25:07

But I think that, there's been more and more conversation around it. So the good news is I feel like since we have this new person. her name is Kathy. She has done a phenomenal job. I think I've just really, so she by profession is an occupational therapist, so I think she has a little bit more context for what it looks like to support

Anika 25:28

Yeah.

Kara 25:29

People. so I feel like she's just done a great job. And so as of a couple, like maybe a month or two ago, Levi has not just a buddy. So there's a buddy that's coming a couple times a month to be with him, and she's an adult that just is volunteering. Pretty young adult, I think. her, we have a lot of military families, in the area because we have Pendleton right nearby. so that's lovely. But there's also, and this is the part that I'm like, this is like the shining star of it's been incredible. So there's a gal named Ava who is, they called the like program, like basically, a friend program, and I wanna say friend in quotes because, the idea was that there's going to be students. This is, I think, the part that's already I'm like, okay, we are onto something here. Students That make a special point to befriend people that they see are having a hard time integrating and being part of the community. And so there's this girl, and I think she's a freshman, Levi's a junior. Her name's Eva and I could not love her more. Like she is just literally you look at her face and you're just like, oh my gosh, you're like an angel. she's just smiling she has all these beads, like bead creations that she's made and like gifting Levi and is a friend. And I think this is the thing where it's like shifting from, oh, I'm gonna be your friend'cause I'm gonna help you to I'm your friend because I'm your friend. Yeah. and I feel like they have quite easily made the transition over. Now, is she gonna invite Levi out to hang out outside of church? I don't know. Probably not. she doesn't drive, obviously, but I feel like to have a genuine relationship inside of a community like that, like it just makes all the difference. So

Anika 27:12

it really does. Yeah.

Kara 27:13

How did, so there's some good things going on.

Anika 27:15

What's her best? how's that created do you think? Is it,

Kara 27:18

I know her mom, so her mom and her and I are all on a text thread, so I know her mom's involved.

Anika 27:25

Yeah.

Kara 27:25

And. I don't know enough to know, like what had her say, yeah, I wanna be part of this program. now I'm like, I should mask because I wonder

Anika 27:34

what moves a young person to do that.'cause I think of, for Ella, she does horse therapy and one of her sidewalks, is named Maya. And she is amazing. And she has that same kind of energy where yeah, she's there volunteering, but she really wants to be a friend to Ella. You can tell the way she communicates with her. It's always asking her about what's going on in her life and things like that. And it just feels different. I don't know. What is it about these two people we're talking about that's uniquely. Gifted with this desire to connect at that level.'cause sometimes you get kids that are there and you think, oh, they're getting this for credit for school.

Kara 28:15

Yeah. Yeah. Or

Anika 28:15

something else. they're using this toward the stepping stone, which is awesome. Not, there's nothing wrong with that. that it's still respectable that they're doing that, But then on the kids that take it, this other level of like really caring for a child and wanting to see them as the individual that they are, they're looking past a disability, they're really looking at them. And I just, a beautiful trait.

Kara 28:38

finishing the story, I saw half started, we did this survey at our church, and then my friend's sister was there and I asked her, I said, what was it about how you and your sister were raised that has you guys like, show up this way? And,'cause I said, are you aware that you are. I don't know what I said, but like essentially I said, are you aware that you're different? Are you aware that like the way that you show up here is different than most people? And she was like, not aware and, but I think then she was like sad, she's what are other people doing? Oh, yeah. Because I don't, for her, she's not doing something different. She's not. Actually, and this is where it's funny actually, she's not being intentionally inclusive. And that's I think, almost the point where she was raised because we, Dan and I were asking like, what did your mom do to have you guys be this way? And I think the answer was just like, She didn't necessarily know, but like she, this is just what was normal for us. and like her mom's, not a special education teacher and not necessarily in any way, professionally associated to like, have had an awareness. I think there's just something about, I don't know. Being someone that goes outta your way to, to see people and I don't know. I am trying to teach my children that, some of them are picking up on it more than others. And I say it that way as in, and I respect my kids. where they're at is they're not like flocking toward, I wanna be part of the helping the disabled community. Yeah. Like that they're living, they are doing their work. Let's put that way. Yeah. They're, they are. and I think they sometimes need a break from it, Yeah. In terms of outside of our home. But I think Yay. We're celebrating some steps taken at church, but then there's still. there's still a lot of steps to be taken, I'll put it that way. I think especially on our mind, because we as a junior in high school, and what does it look like for him to participate after high school? In church? Yeah. Because one thing of course like church is about, spiritual growth. Obviously it's also about community. It's also having a place to belong. It's also having, a place to be known, a place to serve. So I'm not totally, that's where I think we have a new pastor that's, in charge of, essentially after high school, I don't know what they're calling it, young adult. And so my husband and I, we have our, I on him, we're like, when are we gonna talk to him about what's coming? and scoping him out, but okay, is this guy gonna. Essentially, step in as in this role is asking him to, or at least we are. So I

Anika 31:12

don't know. I just saw on some, I know some online thing, talking to a little bit about that and it brought up this good point of if we aren't speaking out then the church in whole, just things we're okay in our community. And I know for my own sake, I tend, I have tended to feel like someone needs to be pursuing me on that level'cause Oh, you can, can't, we have this kind of challenging, difficult situation and we've had pastors in the past that have been come alongside us when we just didn't have the energy to pursue anything. And that was just such a beautiful gift. they're no longer in the area, so that's a bummer. But But now I'm realizing, ah, maybe I gotta take some steps forward. And that, and feels vulnerable to be like, it's one of those things again, asking for a need, and it's, it feels like one that in a church setting, that should just almost be like given and it's not,

Kara 32:06

and that's exactly what comes up for me when I think about it, is okay, one, I think you're onto something. I was like, yeah. So my little coach mind is yep. It's another place where we have to step into acceptance of what is and where people are at and where culture's at, et cetera, et cetera. and then step into, being at cause and creating what we need. And I guess right now, as I say that, I'm a little nah, like pissed about it still. But I think the reason it is so vulnerable. It's so vulnerable because I think it's one thing to ask for help from other people, but I think especially knowing what church is all about, those are the people that are, again, in quotes, supposed to help. And so to step into a asking relationship or needing relationship with people that are technically supposed to be like, yes, like it is our mission to serve the, this, the sick and disabled. that's what Jesus was all about. I should say it was all about a lot of things, but he was big on seeing the unseen, healing the unhealable, and, spending his time with those people, the more than others. So I think it's like really hard when it feels like, No. And or, anything less than an exuberant Yes. Yeah. And taking it from us feels, I don't know, a little bit like rejection. And I think it's so hard to step into that possibility.

Anika 33:34

Exactly. and I understand not every place has a capability to serve. to, manage all the needs that our children might have. But it's nice when there's a conversation around it. I think I've told you about that time we went to, a vacation Bible school and it was one of those things that Ella was really excited for and we had it was not a church that we were part of, so it was just a community thing. And they were very open about everyone's welcome, it's amazing, all this stuff. And, what we found with that they tried to put together. They knew Ella was coming. They had some idea that she had some needs, but I think the setup just needed some help. I think there's things that was learned from the experience of having Ella there because she could not keep up with the kids. They didn't have someone there that was full-time helping her with the needs that she had. We weren't aware of this, but we found this out later. Then at the end of the day, she wanted to go on stage and sing with the kids. So she just walking up the stairs, which is, as like huge exhaustion for her and she wasn't supposed to be up there. So they'd make her, they drag her down rather than just being inclusive and just going with the moment, It was like really one of these things that you're like, he, we didn't do this super well. People, this was a, there's a lot of lessons that could have been learned. yeah. And so it was one of those painful experiences where it was like, this should have been super fun, should have been engaging. I had a lot of responsibility with that scenario because I didn't give them maybe enough information. I wasn't really aware of how this was gonna flow, like how the day would go. and then, the last situation with her trying to get on stage, that was just, she loves music. She just wanted to be moved. And I'm like, someone could have just let that go and just let her be up there wouldn't have made a would've difference, but, It was one of those moments where we grieved it, but we also looked, imperfection exists in every facet, even within the church. And yes, those people were kindhearted and had we not just stormed out of there, we were upset. So we didn't go back. Uhhuh, I didn't handle it super well. and looking back, we should have probably stepped in and done more of Hey, this, couldn't we have handled that situation a little bit better? Maybe. Yeah. So I don't know where my point is with all that.

Kara 36:09

no, I mean I think it's just, I, bringing it all to the light. What's my, a conversation I had actually it was on the podcast, a wonderful guest. Her name's Kim Botto, B-O-T-T-O. And she has a book, looking on my bookshelf, see if I can find it. I haven't read it yet, but I am gonna read it'cause I bought it. I'll figure it out and put it in the show notes. But, I love her. She has like a very, what kind of attitude? It's a very, this sounds so like generic, a very can-do attitude, but she asks really good questions. So she asks even a question,'cause so picture maybe younger kids or even actually Ella's age, Ella's 12, right?

Anika 36:45

Yeah.

Kara 36:46

I think, so picture like a classroom of four or five year olds, right? So you're gonna have like story time and you're gonna say, okay, kids sit down, and then you're gonna have the one kid who's playing off in the corner and the volunteers that are gonna try to corral the kid to be like, you have to go sit down Johnny. And she just ask the questions of like, why? is this about sitting down and behaving or is this about or quote unquote behaving, or is this about. I don't even know what she would say, but basically like being in a loving environment. Like I think that adults get so caught up in and so back to the, performance that Ella was kicked out of. Is it about having things go the way we expect, as in no extra kids on stage, or is it about being with the kids that are there? And so then fast forward, I had that conversation with Kim, and then I was volunteering as a buddy, for the buddy, system at church. And there were some kids that were like not listening. And it's always uncomfortable, like when you're like not familiar with a kid and they respond to you differently than you're used to, as your own kids.

Anika 37:55

Yeah.

Kara 37:56

but it really made me think why does this kid have to like. I don't rem even remember what they're doing, but it's it made me wonder like about how we are, like, how we are responsible for how, this doesn't work for a lot of kids. yeah. And what's the point I guess is what made me think about is especially something like Sunday School, I get school where it's okay, like I get, we don't have to have, we don't want anarchy, we don't want complete chaos. That's not a great learning environment. But with something like church where it's like literally not about that. It,

Anika 38:31

yeah.

Kara 38:31

and so I was like, these are good questions. So I'm actually gonna be a guest on her podcast, coming up. I don't know the dates, but, so I'll share that on the social medias.'cause she's a cool, she was a cool lady. really liked her. And so she has a lot to say on this topic. So for anybody actually like thinking, okay, maybe I wanna be more part of that, or. Kinda have conversations with my church. I would say she's a huge resource. and I'll

Anika 38:55

say I, living here in Southern California, I've seen a lot of churches online are, including disability and having more of a ministry towards that. At least in my building. Search, I'm, we're still trying to connect and it's hard for us because Ella's got the immunity issues. There's, it's never straightforward for us, but, I do feel like there's energy around this and that, that's being spoken to and that's programs being put together. so those resources, I think will spread and development and materials are, and also women out there speaking on this topic and putting together great resources. It's probably there. It's just, if it's not your local community, it's hard to know how to get started. Where to address it. who do you connect with that's gonna be that advocate for you and your family? And then even like for us, it's stepping out into the realm of pursuing it. And then you're like, but we may not be there more than, three times in a year. And granted, let's hope it's a lot more, but I'm just thinking from the immunity side of things. Yeah. we never know what that's gonna look like. So

Kara 40:03

you totally And'cause I think that's, this is like a different area of need, but so I remember a couple years ago we were advocating Levi wanted to be part of an afterschool club. Yeah. And the teacher was like. Not super, let's just say she didn't understand the law and what Levi is entitled to as a student of that public school. so no problem. we brought in our advocate to make sure that the administrators did understand. So essentially we paved the way for him to have one-on-one support just as if it was during the school day, which is what, the law requires. And we did all that, right? And then it was like, I don't remember what it was, but it was like he was out for surgery and this and that and so we actually never did the club after we like paved the way. Yeah. And so that's actually, I think, but applicable that, that's part of understanding this community is knowing that, the li our lives are not as predictable as other people's lives.

Anika 40:59

leaning into what you just said, I understand that because when we worked with the public school and tried to put in stuff to play, we've been going through different treatments and then we get pulled out and it, and that is one area that of education, I think across the board with all the communities that we're trying to be a part of, that we will likely be having to step in and out, And so if consistency is something you're looking towards for us as a family, that is probably not super likely. and so it does take an extra step Of connection from the organizations you're trying to be with, to be okay with that. And a lot of systems don't like that. It's uncomfortable that it's inevitable, like with the school district there, Ella's now homeschooled, but we were pushed back a lot because Ella wasn't in the classroom. She wasn't here, she wasn't there. And we, so there's a heap of guilt and Tension and yet it wasn't physically possible for her to be, so it was, it's I don't know. So that's a whole nother area of disconnect. But I think it's all comes down to education and adaptability and awareness. Like all these communities, we're just. Stepping into our world is I mean I always think of dropping into Mars, like it is very different. Like you may not understand all the specifics and every child's so unique that it does take a lot to learn about the needs of your child and the situation and all that. But on another hand, I think just being open and willing to be acknowledging it, where some systems just shut down. It's just no, I can't, we can't handle this. Or they push back onto the parent or even the

42:44

child.

Anika 42:45

Yeah. Is wrong.

Kara 42:47

Yeah. It makes me think back to what you had mentioned earlier about. We have to be essentially responsible for, Communicating and sharing and exposing people to our world. And again, I don't love that. I have to say I still don't love that. But I also do see where I was. I'm thinking back to the teacher that I just mentioned that was also an academic teacher. And I remember when we were doing communication or when we were communicating, they had put in their own child's, health, stuff. And I'm gonna totally say what it is'cause I was just, in my mind, I'm like, that's not the same. because she said it in a way that it was like, it was the same. So her child had finger cancer. oh. So there, so I'm not saying I wouldn't be super like, ah, if my kid all of a sudden had cancer at the tip of their finger, that would be a bummer, right? I wouldn't celebrate that. But I'm also saying that is not the same as brain cancer. So we are comparing and we're saying those are not the same. And, but it was the experience of saying, oh, I understand what you're going through because my child too had cancer and Mya child too has x, y, and Z learning disability and we just had this thing happen. so she was putting these things in the space as if they were, in any way related to what we were going through. And it was one of those things where I was like, in reading the email, I was like, I think what she's trying to tell me is that she understands, but what it's actually communicating to me is that she has no effing idea of what actually is happening over here of what we are dealing with a magnitude. And so actually it was interesting and. It's

Anika 44:33

I go back to that word minimizing because it's minimized.

Kara 44:37

Yeah.

Anika 44:37

Your experience,

Kara 44:40

it very much was

Anika 44:41

Right.

Kara 44:42

You know that. Exactly. It's

44:43

that's

Anika 44:43

how I would read that. Yeah.

Kara 44:45

Yeah. And so that's where I think it's that's when communication gets hard for me because I'm like, okay, like now I have to go back in and in some way reiterate. And then I think there's the part of me that it's oh, I don't wanna ruffle anyone's feathers. I don't wanna show up as a raging. Be like, I don't want people to see my anger. Like I don't wanna be out of control. All these things that are just vulnerable.

Anika 45:14

Oh.

Kara 45:15

and so that's where we this, so anyhow, I don't know where we're going with that, but, so I think we're not alone in experiencing these types of things For sure. But Oh, back to what you're saying is I think people just have no idea. no, and then, I dunno if this is outside of the coaching world, but like they, there's a saying like, there's what you don't know and there's what you know you don't know. And then there's what you don't know. You don't know. Yeah. And I think that this falls in that last category. And that's when I think, we have to figure, and this is why going back to sharing our stories and sharing all the parts of our lives, not just the, rainbow and Daisy's on the other side kind of stuff. It's not easy.

Anika 45:59

No. And I think you're right. I think by sharing our stories, in going back to our community here in pathway to Peace, but also on the podcast as well, you have to communicate and give the narrative or no change is gonna happen. And I think when you do it in a group like we do, you have so much strength behind it. And, we've talked to a lot of different communities today of groups of people. we hope will show up better for us or we could change. It's empowering for us as a group and a community. To have each other as a resource to just give support and keep pushing, because to do it alone is so isolating and so depressing and exhausting. And I segue, but when we first met you and I was, Ella was going through a second round of pretty serious health issues and I was just burned out. I hadn't dealt with the past. I was also needing to deal with the future. And so falling into our community just was such a resource. And so that's where I think I learned the importance of community and what that looks like and wanting to change it. And so I think how we're talking today is okay, where can we find more change? we have each other now, this organization of people working together, supporting each other. But then where are the areas that need to have growth? and ourselves. I think I. I had a lot personally of growth I needed to do, and that's where I think you have been a huge support for me and recognizing areas of growth. I was living a lot in bitterness and anger and upset, seeing all these areas that were falling apart from my daughter and not knowing where, yeah, I didn't know what the next five, 10 years were gonna look like, but I knew what it would look like for me and that was burned out.

Kara 47:51

Yeah.

Anika 47:52

So I'm

Kara 47:53

like I know

Anika 47:53

one

Kara 47:54

thing,

Anika 47:54

I know one thing in this whole thing. I'm gonna be burned out. And, so yeah, it's what I love about us sitting here talking today is like, yeah, we can sit here, we can talk about these things. And how many people have experienced this? probably just our community. and it is a, it's a painful thing to have to go out there and try to make these changes, but it helps to have. Other people out there?

Kara 48:18

yeah, no, I think as you're, sharing, I think I'm synthesizing or seeing how having these safe places. So Pathway to Peace is a safe place. It's designed to be a place where you can come as you are. You can bring the anger, you can bring the sadness, you can bring the, like wanting to change things, not knowing how all of that, but it's like we don't have to behave ourselves or even advocate in that space. It's knowing that you have a place to go and be seen. and even I experienced that this weekend where there was just, I don't know, it was just one thing after another with Levi and it was tiring. But knowing that we have this place where we can share that and be like, yes, it was a really hard weekend with Levi or with any of our children. And, So we have those places and as I was, talking a moment ago about, the fear of showing up, as a monster in the places that we're trying to advocate for. I think that's where, work we've done together, and I do with myself and the community is, a lot of times, if we haven't maybe taken some time to do that personal work, we go out there and we lead with our anger. And that's the thing that fuels us. And I'm not saying that there's not a time and place for that, but generally, that's not going to actually be the highest, the most impactful way of showing up. usually it's just gonna have people scared.

Anika 49:41

Yeah.

Kara 49:42

and so again, there's a time and place, but. if we give ourselves the space to process our own anger, heartbreak, upset, like all of the things, then we get our footing and then we can step out and do all the things we've been talking about, To, we have that, capacity to step into more vulnerability. We have the articulation, we have the clarity of what we're really looking for and what we're really needing. and maybe even accepting like this acceptance piece we talked about a couple times today where,

Anika 50:12

yeah,

Kara 50:12

we don't have to like it, right? For something to just be what it is. but accepting that what's necessary for some of these changes is sharing and essentially leading it even though it's not really, what we asked for. it's what we have. So accepting that and doing the work. So those are just my ramblings, but yes, I'm so glad you're part of Pathway to Peace. So you're one of the OGs. Yeah. Yeah. okay, so the quick history is that when I first, I've told you, I'm sure you've heard, I never, ever intended on being a coach for special needs moms. never did I ever think of that when I started coaching. but one thing led to another and that got really clear that this is where I'm supposed to be coaching. so I stepped into that with Faith, started the podcast, and then you, and I won't name the other ladies, but you were, I think maybe like the second round. But some of the other ladies are still part of the community, and you're my OGs. And thank you so much for trusting me. And I was, I'm still figuring it out. very much But for, allowing me to figure out how to. How to be a coach to this community.

Anika 51:22

Stuart? Hey, I honestly had no idea that you hadn't been doing this for 30 years. But you were such a relief. I had prayed about it. I had, looked at different, websites and, online resources and, I just was thrilled that you were doing this. And so it was meant to be at that time of my life. It was hugely impactful. So I'm just so grateful and yeah, I can't believe I'm in one of the OGs, but it's a, it's an honor and honestly Where I am today in our community, I'm learning and growing just as much as the day I stepped in.

Kara 51:58

So my be

Anika 51:59

really, we have such a great resource of people and that it just, it helps it just to have. And I go back to the consistency, the community that is there week after week. That is just such a gift. I don't know, I don't know where else you would get that resource. And it also is nice to have people that are dealing with all kinds of stuff. So it's not just your situation, your, disease or diagnosis, although there's those out there too. But it's just to have the community with lots of different elements to it. you gain so much from that too.

Kara 52:37

I think, yeah, it helps you one step out of your own story.

Anika 52:41

Yeah.

Kara 52:42

And I think two, which is very powerful, but I also think it helps you step more into your story, meaning that Yeah. And'cause I have this experience where, you know,'cause right now we're just, wrapping in the new members of the community and getting to know them and, so we're sharing more of our backgrounds and stories and that kind of thing. And so you hear these stories and you're like, oh my gosh, right?

Anika 53:02

Yeah.

Kara 53:02

But exactly. But that, I think when I say that, that helps us identify more to our own story because then it's like your own story. Oh my gosh. Yeah. And so I think that is one of the gifts of holding one another's stories. We can't fix it, right? We cannot go over there and reach across the screen and make anything better. And so being with it, I think is a skill and practice that we're all developing in a way that doesn't necessarily, we're not taking on one another's burdens, but we're just literally practicing being with and by being with all of us in all the ways. That is where I think, I don't even know, like how I would articulate it, but that's where I think the power of the community is so

Anika 53:45

well, and I think just that statement being with, I think that's what we struggle with so much, with even family or friends that are trying to, be with us, and yet it feels like there's this huge divide, and I'm don't mean that in, in a sense that if the, they're not really wanting to be a support to us and being part of our, but they just exist. I don't know what it is. doesn't mean love and other things aren't able to be in your journey, but this community Yeah. It's like they can be with you at a different level that nobody can be, I, unless you're in this world, in this journey And like I, I look at these women and I'm like, oh my gosh, it's so amazing what they're doing and how they're accomplishing it and managing life. And it does give me a reflection, a mirror back to my life going wow, in some ways I have it much easier. Like it's different situations. and I, I'm blessed with this, versus, but my challenge might be here, it's interesting to have that reflection, that mirroring back and forth that does give you more accountability and, I don't know, balancing, maybe I don't

Kara 54:59

Yeah. Or I think you see differences that like, I'll use,'cause we have a couple single mom gals

Anika 55:04

Yeah.

Kara 55:04

In our community. And then that's just one I use as an example where it's oh wow, okay. I have this husband and like in, my case like, and I know your case as well. Like super supportive, very present husband.

Anika 55:18

Yeah.

Kara 55:18

Wow. Okay. I can use this to say, isn't that incredible that I have this thing? Not in a way of pitting the other gals'cause at all. But, to use it as a way of pointing us toward authentic gratitude. And I use that to distinguish.'cause we're not, we're not trying to use gratitude as a way of canceling out other our feelings. We're using it as a way to, create balance. And I'm hesitant to say balance.'cause it sounds like it's this equilibrium thing, which it's never, but, to create energy in another bucket, let's call it that. Yeah. It's pretty magic. Okay. Is there anything you'd like to share as we wrap up this episode?

Anika 55:58

I think today we just landed on like a conversation that you and I have would have, like we talk about if we were at lunch together or whatever, and just the kind of going back to the weekend, our hopes for community like that. If I was to choose how I wanted to spend my time with you today, that's how I would choose to do it.

Kara 56:21

likewise.

Anika 56:22

yeah, I think, in closing, is there anything that I would wanna share? I think today, like with what you were talking about, being, with being seen what we did today, and that is the biggest gift. that's what it, that's a gift with not just this community, but other family members and outside community. and I think we talked about that today and shared about our dreams and our wishes for that, but also shared the pain. not having that, and we carry that too.

Kara 56:51

Yeah. said. Good summary. Okay. with that we're gonna wrap up. We'll see you in the next episode.