Ep. 11: Embracing Your Therapy and Medical Tribe w/ Kari Harbath




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Do you totally love your child’s intervention tribe? Or do you see room for improvement in that department? Kari is an exceptional example of opening her heart and home to her tribe and is so inspiring. In this episode, she shares all about her deep love and appreciation for professionals that have come together for the good of her daughter. She also shares a few strategies she’s used to keep up with doing “all the things” that her tribe recommends. 

Shoutout to amazing therapists/doctors/nurses/specialists everywhere that support and love our children almost as much as we do.  

Episode Transcript

Kari  0:00  
"These people come in and they you know, change your life and they change your child's life for good, and help you kind of navigate waters that you'd never thought you would be navigating."

Madeline Cheney  0:11  
Hi, I'm Madeline Cheney, and you are listening to Episode 11 of The Rare Life: Embracing Your Child's Medical and Therapy Tribe. In this episode, I'm talking to Kari, who shared her story on episode 10 about her daughter Sloan with profound deafblindness. If you have not listened to that episode yet, I highly recommend going back and listening to it. It gives a lot of context for our conversation in this episode, and she's just an awesome person and has an awesome family. So head over there, if you haven't yet. In this episode, we will talk about her therapy and medical tribe and what it means to her. One thing that I've reflected on since recording with her Kari is so awesome. She's so inspiring with her openness, and just the love that she has for her medical and therapy tribe. I thought I loved mine. And then listening to her, I'm like, wow, I could step it up, I really could become more open and more loving and really embrace them better. So I hope that this is an inspiration to you, too. So, we will also talk about her experience in knowing when and how to cut ties with the unhelpful members of the tribe. And she also talks about practical strategies that she has used in order to follow through with advice that is given to her from her therapists, which was also really awesome to talk about. I think we could all use more of that advice. Or at least I could. As a side note, we talked about arching a lot in the episode and I realized later that we never clarified what that even means. So just know that when we talk about arching we are talking about when our children arch their backs excessively. So without further ado, Let's get into our conversation. 

Welcome back, Kari. 

Kari  2:06  
Hey, thank you!

Madeline Cheney  2:08  
Thanks for coming back on the show. We get to talk about your special topic, which is building your therapy and medical tribe. So to start off, tribe was a word that you used when you told me your special topic. What does that word mean to you?

Kari  2:27  
Yeah, that's a good question. Um, so my mom always used the word tribe, about so many people and things. And I think it sums it up, because all of these people do feel like family. But, you know, there's an element where just, I mean, I guess, realistically, they are not family by blood. And so tribe is a good way to describe it because when we entered this world of parenting Sloan, there are so many people that have entered her tribe now whether it be a nurse or a doctor or a therapist or a specialist of some kind or even just, you know somebody like you like I would consider you part of Sloan's tribe because- 

Madeline Cheney  3:13  
Awesome. So flattered.

Kari  3:16  
Yeah! That's another great thing is the tribe can be just like gigantic and everybody can be included in it, it's an inclusive thing. And I really do feel like if we were to line up, you know all of these people and get together for one giant group picture it really does just feel like a tribe like a community of people that is there sort of centered around one purpose which is hopefully you know, to help Sloan develop, and help us help Sloan develop and grow and succeed and just be the best possible version of Sloan that she could be.

Madeline Cheney  3:49  
Yeah, yeah. I think like when amazing thing too, like with different therapists and doctors and stuff. Is like, they went into this field to help people like Sloan or like Kimball, like these are amazing people, this is what they dedicate their lives to. And so I think that in and of itself it... you tend to get really awesome people that are in those careers.

Kari  4:09  
Yes. Oh my gosh, I I think like, you know, we've had we had one (well and not had, still to this day she's one of our closest friends and really feels like family) but we've had amazing nurse experiences and we have one primary NICU nurse that is still really heavily involved in Sloan's life today and we love her to pieces. And she had such an impact. I mean, it's just watching what she does and how she engages with her work is just a beautiful thing because I stand back in awe like I I don't know how you do it and not in a condescending like, Oh, I don't know how you do it way but genuinely like it is really difficult. And to see what the parents go through and the kids go through and the... how emotionally taxing it can be like, I just I couldn't comprehend that until getting into this world. And so you know, whether it be the primary NICU nurse that is so dedicated to us and Sloan and has been so wonderful and we just love her to pieces. And we're now dedicated to her as a person, or, you know, our therapists that come into our home once a week. And when we initially... I remember somebody told my mom, when we first found out everything about Sloan, they said there's going to come a time when Kari and Aaron go home that they are going to have people come into their house multiple times a week and it's hard to adjust to, and they'll have to kind of... there will be an adjustment period. It's not what you expected. Again, you expect to go home with this, like, shiny brand new baby that you just are, you know, you're up all night, and that's sort of the extent of and not saying that's easy, but that that's kind of the normal challenges people face. And for us, it was like (oh, and you know, Kimball too), it's like Okay, now we're going home. And we're going to have five people a week that rotate through the house, you know, and I, they... do sort of unbelievable things, and they're amazing people. And I think that that has been really grounding for us to meet these people and to see what they do every day. And to realize that this community is out there and you know, it's so nice to have somebody come into the house, that's just totally real and love Sloan for Sloan and loves us for us. And there's really no expectation of like, oh, Sloan this special child so you know, but there's also no like, Oh my gosh, this is a lot to take in, you know, as they see like the medical equipment and you know, how Sloan engages with the world. They just come in, they love Sloan, they say "oh my gosh. Today..." like at OT last week, it was like "she moved banana puree to her face. We are done. Mission accomplished. Everybody go home." Like that was our OT session. And we were happy And we were all laughing and it was joyful. And then it was very realistic. Like we all know, we know where Sloan's at, and we love Sloan for Sloan. And so I think these people do it not just for Sloan, but that they have, you know, a caseload of children that they visit every week, different home life situations, different, you know, different diagnoses, like whatever it might be, and they love all of them and support all of them. And they are so invested in their lives and it's just really amazing to see. And they're experts. They know what they're doing for sure. I don't know where we would be without them.

Madeline Cheney  7:33  
Yeah, yeah. I also feel like I know so much about like, I don't know, something like language development, where we work with a lot with Kimball's hearing therapists. We're like, I know so many things that I would not have known had we not had this-

Kari  7:50  
Oh my gosh, yes.

Madeline Cheney  7:51  
If we would not have had Kimball with all these different issues, because I don't know they're educating you too, as you're going along. It's pretty cool. All the stuff they know.

Kari  7:58  
Yeah, it is really cool. It was kind of like with PT a great example is Youngshin. Which you know very well, because, yeah, Kimball was our... was... we didn't know it at the time....but...

Madeline Cheney  8:16  
Okay, yeah, can we share that story really quick?? 

Kari  8:19  
Yeah, that was crazy!

Madeline Cheney  8:21  
Yeah! So Kari and I met at a deaf blind parent conference. It was amazing. And we were sitting at the same table and then Kari was talking about Sloan arching her back and I was like, That's crazy. I've never met any other parent who had a child issue with arching. (I don't know if anyone's listening that even... I don't know, maybe it's only us. I don't know). But like, but it was so crazy, because let's see... how did we realize we had the same PT...

Kari  8:46  
I think we made the connection, that Youngshin was PT somehow. And then I was like, Wait a second, Youngshin, she just mentioned, because Sloan was just starting to get over... the arching got so intense and Sloan grew like a weed like she just grew unexpectedly. And so it was so intense and she was so strong and it was so difficult, like it that was so taxing. And we were at the, like the peak of it when we went to this deafblind conference. And then I remember Youngshin kept saying, I worked with another baby. And let me tell you, if you just keep working, keep working, it will get to the point where it will reverse and Sloane will start... she'll basically fall forward because she has no strength in her back from arching and then work her way back to sitting. And so then you were like, Oh, wait, Kimball has been arching too! And we were like you have Youngshin? And you're like, yes. And we're like, oh my gosh, you are the you are the person. You're like our beacon of light. Friday. 10am Kimball is being mentioned...just not Kimball's name. So.

Madeline Cheney  9:50  
Yeah, like, you know, like HIPAA or whatever. It is like yeah, I think it was something you said. You're like, "oh, they told us that like if she if she doesn't stop arching she will never be able to do anything physically" which is like, a really hard thing to hear. Like that ultimatum of like...she told us too, she was like "he will not sit up, he will not crawl, he will not walk, he won't do anything until you can get him to stop arching his back."

Kari  10:15  
Yeah, I feel like too, something I've reflected on because... so we went to... there was a deaf blind conference and at the deaf blind conference, some of the parents of children that are a lot older, all they kept saying was like early intervention. I don't know if you remember that. But I remember several people mentioning just get them into early intervention and PT, whatever it is, and then we went to this event at the Capitol. It was basically a meeting around a bill that they were proposing for nursing and home nursing. And at that meeting, we met actually the man who runs Bear-o Care in Salt Lake, and he has a son who has CHARGE and he said to us, too, he was like, get early intervention in, you know, take advantage of all the resources you can. And I feel like through that there's been a theme and coming back to it. Younshin in that moment with arching is a great example. Because for us, we always thought early on, before we really had Youngshin helping us identify the arching issue, we always thought that was just Sloan being Sloan and being strong, like we didn't know. And so if we didn't have the help of Youngshin to correct that, we would be at that point where there was no return like that... we would be there for sure. And so we kind of talked about this in the last session, but you find out this diagnosis in the NICU, you're so overwhelmed with everything, it just is like, how do I even begin to do this journey, like what do I do to help them at all, and then you get home and it's an influx of experts, specialists and therapists, and they help you start at sort of point one and I think that made all the difference because suddenly we realized like, okay, our job is number one, love Sloan and support Sloan, and take good care of her and make her feel like a baby and part of our family. And then number two, when Younshin shows up and says "Don't let her arch", don't let her arch and let that be your focus for the week, you know, like, we don't need to think Is she going to stand? Is she going to speak like, Where will we be 10 years from now? It's like, okay, right now, all we need to do is follow the lead of our PT or OT, you know, speech therapists, DeafBlind school, all of the experts that are coming into the home and really allow them to help guide us in sort of the necessary next steps to get Sloane help her develop, you know, to her like best ability.

Madeline Cheney  12:45  
Yeah. Um, how have you... I don't know, this is something that's been on my mind a lot. I've been trying to figure out how to be more successful in doing the assignments that different, you know, therapists give us to do with Kimball, because some of the times I just, I... there're so many things... like he has so many therapists and each of them, at least in our case, like we get a lot of different recommendations or ideas. And so it feels a little bit firehose. So what have you have you ever had... I don't know, have you struggled with that? Have you been able to figure out strategies to... in order to do, you know, do all the things that you're supposed to be doing? 

Kari  13:27  
Oh, my gosh, I--so there's this really great book called Special. I don't know if you have read it in. It's so good. And it is one that I think parents it will be especially helpful. It's very realistic, very much realism. There's a really positive theme throughout all of it. That's basically like, it gets better. It gets easier and you let end up loving your child more than anything, and that's really all that matters. But if they're very real about all the hard stuff, and one of the...there's this quote in there where they mentioned, somebody says something to the effect of if I did all the therapies and things I was expected to do every day, I would have, like 27 hours of therapy. And it really feels that way. And I think...and we have the firehose, too. I mean, we have people, and they're so well intentioned, but we have people in the community that maybe had a cousin that is deaf, or their aunt works in a special needs, you know, department in a school and it's like, she said, to do this, they said to do this, they you know, it's just like non stop. And so a couple of things we've learned out of all of this and you know, again, we're a year in and... who knows, works for us. So there's that. But one like... our expert people, the tribe that has formed around Sloan, they are the people that we focus on listening to first, because they know Sloan, they're here every day they know us. They know what you know, what Sloan is capable of they don't view Sloan as a case but as a person. So I think that has been a biggie, another big thing for us has been like what, you know, we really focus on... I mean when you think about it, a lot of PT that you do beyond stuff like maybe counteracting arching or certain exercises or whatever, a lot of it happens in your day to day routine anyway. And so when we're with Sloan we try to factor in like... we were playing with Sloan, we will try to sit her... she's not sitting up quite yet, although she's not arching anymore, which is great. But we'll sit her up against us and you know, play with her that way. And so we're always doing something PT related, but like right now we're working really hard to help her bear weight and learn to crawl and stand and things like that. And so we've been dedicating like half an hour in the morning and half an hour at night to just kind of hanging out on her PT mat and working with her even if it's hard through that half an hour to practice her...You know, to have gained strength to practice that. And then the very last thing that has really helped us recently, our OT recommended a sensory swing. And it's, you know, if you haven't seen one, it's just like this giant thing of fabric stretchy fabric, and you hang it from the ceiling. And then you just push like for us, we just lay Sloan down, and we kind of push her around and bounce her for probably 10 or 15 minutes, about five times a day. Sometimes it's less, sometimes it's more, we don't try to stress out too much either way. But we try to stay in a routine. And that has helped her stop looking for so much, you know, kind of external stimulus with her body. And so it's allowed her to focus more on the day to day activity stuff, whether it's like playing and you know, the way she grasps things, or crawling or bearing weight or really allowing her to kind of mentally focus on things without needing all of that stimulus. And so the sensory swing has been huge too. So that's kind of like three fold. But we have, you know, again, the...oh my gosh, now I just blanked the first one...

Madeline Cheney  17:14  
Is it incorporating it into your...

Kari  17:16  
Yes, yeah, incorporating into your day to day routine, only listening to really the experts that you have coming in for your child or Sloan, in our case, and then the sensory swing. And that's kind of I think those are the three big things right now that we focused on, that have allowed us to sort of, we found success with Sloan through all of that.

Madeline Cheney  17:36  
Ah, yeah, I think I really liked that idea, too, that you mentioned of having like 30 minutes in the morning and 30 minutes in the evening to be like, this is when we're gonna like knock out the goals. You know, I really liked it. I think I'm gonna try that out.

Kari  17:49  
Yeah, yeah! So it's been really helpful. And I think on top of that, we try to find the times where she's the most alert and we she we know she will be the most up for it usually, yeah. Again, she's like she knows the minute we start to try to do it and being deaf blind, like you, you know, and I think this is something we'll probably face with her later in life, but people probably sort of discredit her awareness maybe like, you know, because of she... the fact that she's deaf blind, but Younshin can walk in the house and Sloan will just start crying.

Madeline Cheney  18:23  
Oh my gosh, that's amazing.

Kari  18:25  
Yeah, we don't know, but it's amazing that she knows and she knows. And so we've had to kind of try to outsmart her. It's impossible. But yeah, the two times a day. Well, and then like for her, we do a lot of vision related therapy. And so for that we have to be at like the peak of her because it's so that is the most work for her doing vission related. And so we wait until she's the most alert and usually we have like a 15 minute window and then she kind of starts to get tired and you can tell and we're done with vision therapy for the day. So it just yeah, it's like whatever works for the child and I feel like you get in that groove. But you definitely have to have some kind of structure or else I feel like it just falls by the wayside.

Madeline Cheney  19:13  
Yeah. Yeah, like just trying to kinda like remember to do it during the day. Like, it's harder than just scheduling it in.

Kari  19:18  
Yes. And then to you don't feel that guilt, constant guilt of like, Oh, my gosh, I need to be doing PT right now. And she needs to start walking this moment. And we're never going to get there. And then it's just like, existential crisis. I feel like it's good to have that structure and schedule in place.

Madeline Cheney  19:35  
Yeah, cuz then you're like, I'm working towards it. I'm doing those things. I don't need to worry about it. Like it'll happen. Yeah, I really like that. That's awesome. And what were your initial--So you love your tribe now. What were your initial feelings towards them at the very beginning, or what was your initial experience?

Kari  19:55  
Ya know...So it was it really has nothing to do with the people but Aaron, and I are kind of--we've always been kind of private people like we definitely even though we may not seem it at times, we're definitely kind of introverted. We'd like to, you know, just have our quiet space. And so the thought of having a baby and then in the way that Sloan entered the world and not having a chance to breathe after that, and coming home and having people come into the house all the time, seemed like so much. So we weren't looking forward to it. And I remember at first like trying to keep the house spotless. Just keep it all up, you know. And quickly, as these people walk into your home, they should, because of their expertise and their profession give you the feeling of like, of comfort, and that they're there to help. And I got that from so many people, and I think quickly, we realized, like, as we got to know them and they again became our tribe and our family in so many ways. It's just--Right now they can't come into the house because of everything going on in the world and COVID and we miss them. And so initially, we weren't excited. It felt like another thing to add to the list that we had to do that we didn't expect. Like we just wanted to be home watching Frozen all day, like that's all we wanted, right? And then here we are welcoming these people into our home and doing what felt like initially hard things. But over time, we realized that they were helping bring us a lot of peace of mind. And they were, I mean, helping Sloan do amazing things and so now we miss them and we can't wait for them to come back and they've become like our family and it's almost like our version of like a tea time you know, like when they come in it's like our our social friends circle like a group of your friends and it was initally hard. But now we wouldn't change that if we were given the parenting experience with Sloan, we would not change that at all.

Madeline Cheney  21:57  
Yeah. Yeah, I think part of it is like, I try to hang out with friends that I have, and I had before Kimball. But it's like, but I see Angie three times a month. And so I know I'm gonna see her and like that relationship, you keep it up, like, because scheduling it, but it's like, I get to see Angie again. And like, I miss them. You know, I don't know. I think it's it's awesome. Like you've scheduled friend that has to show up, but they're being paid to be your friend and like, you get to, you know, talk to them. And you get to talk about your child the whole time, which is really fun.

Kari  22:28  
Yes. And I think like somebody again, that walks in and is like, Oh, it's Sloan, like, just the person in front of us. Like, there's no, no big expectation either way. They're not overwhelmed by everything that's going on. And they're not like, you know, treating us like we're a case or anything. It's just like Oh, yep, and we're going to help Sloan do her best. And so it's been a really cool experience. And I feel like it's made us more open. When we were at the NICU, actually, one of the social workers told us she was like, You guys. She was like, I can tell you're kind of private people and she was like You need, you will feel better (And this was aimed to Aaron and I, so everybody's different), but she was like, you will feel better if you just go public and share your story. And that has really been true. And in the sense of like therapists and that kind of thing, like going public in terms of allowing specialists to come into our home and trying different techniques, therapies, has really been beneficial for all of us, including Sloan. But Aaron and I, too.

Madeline Cheney  23:29  
Yeah, because it's like, with a typical child, you don't necessarily have to open up like, you don't have to let in tons of people. But then when they need so much extra help, it's like, you're trying--you have to have a tribe, you have to have this team of people helping and so it's like, that makes sense. Like instead of fighting against it, like opening up and letting them in and embracing it. Yeah, that makes sense.

Kari  23:52  
Yeah. Exactly. So we've definitely learned a lot through that. And I think we we've had great success across the board. There was one person that didn't work out. And that was a really unique experience for us too. Because we, we just want to be nice and we don't want conflict. It sounds like probably really weak and ridiculous. But we just want to just have people come to the house and have it be a happy thing and love Sloan, and that's it. But there was somebody that didn't work out that was, you know, entering Sloan's tribe. And it was a difficult thing to say no, and to cut that service and to make the decision to no longer work with that person. But I think that that's something that comes with this journey, too. And the whole therapy experience is that like, you kind of get to choose too: who's in your tribe. Sometimes it may not feel like it. It may feel like these people just show up. And there's no choice but really there is and at the end of the day, it matters how you're treated as a parent, how Sloan is treated. And you know, how helpful comfortable everybody is in your home and how comfortable you feel with them in your home. And so I think it's really important just to kind of note that like, voicing up--or speaking up. (Speaking up is probably better). Speaking up when it gets hard is so important. And you know, making that decision for your child and for you, it's hard in the moment, but it makes it a lot more comfortable in the long run.

Madeline Cheney  25:23  
Yeah, I totally agree. And yeah, I think I've done the same thing before and it's like, It's nothing personal is just, one reason-- So the person I did cut, I was like, we're not--we're not benefiting, like, nothing really is happening. That was like our personal experience where it had to benefit because we were so flooded with so many therapists and so many appointments. It's like you have to you have to make it worth my time. What would be your advice to someone in terms of like how to know when you need to cut someone or let them go, you know, I don't know, let them out of your tribe?

Kari  26:02  
Yeah. You know, for us, we probably waited just a little bit too long. But we kept thinking, Oh, we'll just give another chance like it was a bad day type of thing. Ours was actually a similar reason. And then kind of along with that, they, you know, this the person that was working with us was showing up with sort of the wrong information and hadn't really planned ahead and was giving us information around Sloan that really didn't apply to Sloan. And we could tell they hadn't done really even just like the most basic research to, like, you know, something as simple as for us, "Oh, so I heard Sloan is responding to sound" when we had just had her ABR. And at the ABR I mean...nothing changed, still very profoundly deaf. And then it was actually in that same meeting, it was mentioned "and she's speaking", and she has a trach so her vocal cords are blocked so she doesn't speak. So there were a lot of things that were kind of points of like--notes we would take, and we would say, No, it's okay. It was a bad day. And we kept sort of allowing it to happen, which was on us. And so I think, you know, in cutting ties, if you feel like it's not working out, and it's becoming very clear, I think it's good to give chances and to openly communicate that. But there's a point where it may not change, and it might just be a better solution to say like, Hey, you know, we need to cancel services for the time being. And that was the best advice that we got. You know, and we know this in a professional sense, but this is like a whole different world for us with Sloan. And so somebody told us to say, you know, we (and it isn't just about the person, there was a lot going on), but to specifically mention that we just don't need services anymore in this capacity, which I realize can't be the case for everybody. But for us, that was the case because we have Sundie, our deaf-blind specialist, and she's the one that's gonna help us with communication. And so, for us, the person that we were cutting from the picture, we didn't need their services anymore. And so really, we just cut the services altogether because like you mentioned, there really wasn't a lot of value. But, you know, I think it's just hard no matter what, like there's no easy way but just rip off the bandaid is, what you have to do, ya know?

Madeline Cheney  28:24  
Yeah, and I think in the end, it's kind of an act of love for your child, it is just another form of advocating for them like you need to be adding. And not just adding like an extra thing to do. It's not helpful. Um, what was your NICU team like?

Kari  28:45  
Um, yeah, so we had an amazing team. And specifically, I mean, so many wonderful primary nurses which I highly recommend if you get into, you know, a NICU to start getting your primary nurse list up because they are amazing and they also become your friends. But there is one nurse in particular Sam and she is still to this day, just our best friend and we love her so much. And she has been an amazing advocate for Sloan and just loves Sloan to pieces, which we've been so thankful for. But one really cool thing that Sam did with the help of my mom was when we found out Sloan was deaf-blind. It actually wasn't long after that, that we met Sam. So it was probably two days and we were still in some pretty intense throws of grief. And my mom had been in touch with Bess, who is a big deal in the deaf-blind community here in Utah, and Bess had suggested to my mom, that we create some sort of treatment plan for Sloan that people before entering her space, if they're going to treat her medically or touch her or do anything that would scare her, that they touch her somewhere like her forehead. So, my mom and Sam, the nurse worked together to create this plan where all medical professionals--I mean, by the end of this we had like doctors that still to this day follow it, her pediatrician follows it. But before they would do anything to Sloan, every even a diaper change, they would come up and they would just touch their thumb and kind of rub her forehead to let her know that they were there. And so through all of this, I mean, it was really amazing at the time. And you know, it's been kind of uncomfortable sometimes to like, get people on board with it, but as people have been on board with it, and Sam was a huge advocate for that in the NICU and all of our nurses would do that with Sloan when she came home and therapists started coming into the house, they were in disbelief by how engaged Sloan was with the world around her, how comfortable she felt with people and touch. And we really attribute it back to those early NICU days where our biggest concern was her medical challenges, but she was still getting some form of physical touch and communication that wasn't negative, before that happened, to warn her. And so, you know, many children leave the NICU, especially with sensory impairments of any kind. And then they're just like, shocked by any form of touch because everything was bad. And while Sloan was in the NICU, she had warning every time before something happened, you know, there was a form of communication there. And so when she came home, and as therapists and doctors have seen her, she's always been really open and receptive to touch, and hasn't really pulled back from that. So that was a really cool experience that came out of the NICU. And actually, Sam has won some nurse, I guess you could say awards or like honors for doing that and implementing that in the NICU. And we have spoken about it at IHC a couple of times. And so it's just been really cool. A really cool experience. If there are any parents or anybody else with a child that has sensory impairments that are in the NICU, or even just a young baby that this you know, plan might work for them. It definitely helped Sloan and us, so it might be worth considering.

Madeline Cheney  32:05  
That's awesome. I wish we would have known that for Kimball. Because we didn't know until he was like nine months old. We didn't know he had vision impairment, but like all he could see were like lights. And then we later found that--that's a whole nother story. I wish we would have done it because he couldn't hear either. And so like, if we could, I don't know, that's an awesome thing.

Kari  32:26  
Luckily for us, we--It was one of those things where we just it was like, all the cards aligned. And we knew this expert that knew my mom, and then a nurse. You know, nurse Sam over here was like, we are making it happen. Like it was a perfect storm for that to happen. And so it's unfortunate that like, you know, there's not an expert always there to be like, Okay, and then this is what you need to do when you need to enter their space and that kind of thing.

Madeline Cheney  32:50  
Yeah. So that person that your mom talked to was part of your tribe. Like she was someone who helped Sloan. There're so many people that have helped.

Kari  32:58  
So many people, yeah. We're hoping to hop on a call with her in the next maybe month or two and to meet Sloan and to just talk through things, which will be really cool. But yeah, the tribe is awesome. We love the tribe. Yeah.

Madeline Cheney  33:15  
Um, so just to wrap up what--let's just wrap up with like your, your last thoughts about your tribe and what they've meant to you.

Kari  33:25  
Yeah, they, you know, I just... they're all just beautiful people, and there's really no way around it and experts in their field, and experts in things that like people take for granted every day with their children. And so, you know, it's, again, it goes back to that initial shock of receiving a diagnosis and you're like, I don't know where to go from here. I don't know what to do. And you just sit in that as a parent. And it feels so overwhelming because here you are in charge of their medical calendar and getting them to you know, appointments, and making sure their diapers clean and making sure they have a cute outfit on and then on top of that their development, you know. And so then these people come into your home, and one by one, they teach you something new that just needs to be done in that moment. It's not thinking about what needs to be done when they're 40, it's not thinking about you know, like let's learn you know... a good example of that's language, let's learn all tactile sign in a week. Like it's not-- they say right now she needs, she should be learning "eat" and she should be learning "mom" and she should be learning "dad" and they help guide you through that whole process and really serve as sort of, you know, your guides and mentors as parents as you're trying to navigate the world with Sloane and give you amazing ideas like swimming. I mean, Sloane loves--that was something we didn't really even consider with Sloan because we were just too scared and it freaked us out and somebody said Take her swimming, what's the big deal? And we were like, you're right. And she loved it. And you know, our vision specialist, she was the first one to ever really, like, truly use the word "fun". Because Aaron and I are big Disney fanatics. And she sat in our house, the first time she came in, she was like, you guys, this is gonna be so much fun. And she used that in such a meaningful way that Aaron and I just broke down at that. I mean, this is the first time she came into our house. And here we are sobbing in our house. Oh, we're the worst. But it's like these people come in and they you know, change your life and they change your child, Sloan's life for good and help you kind of navigate waters that you never thought you would be navigating. And so it's hard at first and it's hard thinking that you'll have all these people coming through your house all the time. But eventually you get to a point where you're like, you know, rolling out of bed and you're like Oh my gosh, yay, Ali's coming by today. You get it all set up and you don't really care what the house looks like, you did your best and you know that they'll accept you and love you and love Sloan no matter what, and so I think that's huge. And they're just amazing people, and it's so worth it. So.

Madeline Cheney  36:10  
Thank you, Kari. I Love that. That was amazing, some great advice, and just a beautiful experience that you've had with your with your medical and therapy tribe. They're amazing. For photos of Sloan's tribe, head over to the website, therarelifepodcast.com and look for Episode 11, where you can also find a link to the book Special that she referred to in the episode. If you would like to share your story on the show, head over to the rarelifepodcast.com and go to the contact page. I would love to hear from you. If you want to connect with and interact with other parents of where kiddos join our Facebook support group called Parents of Children with Rare Conditions. It's great and the more the merrier. Tune in next time for a conversation from one of my favorite therapy tribe members as we talk about three fun tools to facilitate language development. See you next time.

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Ep. 119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-2-23/319744619-22050-1-1e2071eee4df4.m4a


Hex Code

68: Dipping My Toes into Educational Advocacy