S7 Ep2 Transcription
Season 7 Ep 2
Intro: [00:00:00] Welcome to the Dear NICU Mama podcast. I'm Ashley and I'm Martha, and our mission is to connect the past and the present NICU mom by celebrating our stories and what our babies have overcome. Whether your NICU journey was 50 years ago, or whether you find yourself in the NICU today, we hope that this podcast reminds you that you are not alone.
Intro: Hi friends! And welcome back to the Dear NICU Mama podcast. It's your hosts, Martha and
Ashley: Ashley.
Martha: I was really struggling to get the whole thing out, so I was trying to use hand gestures to get it there.
Ashley: If we included audio or video, I mean, I swear people would probably unsubscribe. They'd be like, this is so unprofessional.
Martha: They would, they would be, um, I don't know. I think it'd be good. We could have that. Never mind. You know what? I was gonna go down a thought trail. I'm
Ashley: We've gone, we've [00:01:00] gone down, we've gone down quite a few thought, thought trails this morning, which has prevented us from actually recording this episode. So let's stay on track.
Martha: Um, well, Ashley, how are you?
Ashley: I'm great. How are you?
Martha: I'm good. We had, um, kindergarten open house this morning. So I feel like
Martha: is a great time to talk about this episode. And this is actually the first episode that will air of season seven. That's so exciting.
Ashley: Technically, episode two.
Martha: Technically episode two,
Ashley: But the, yes.
Martha: a, an episode in season seven. That's incredible.
Ashley: It will be an episode.
Martha: episode. So good job to us. Um,
Martha: how was your, how has your summer been? Are you okay?
Ashley: You know, we are hanging in there. Yeah. We are about to enter what I call crazy season as photographers. So, um, [00:02:00] if you need me, I will be behind my computer editing most hours of the day. But I'm excited. It'll be, it'll be good.
Martha: And we're still alive and I think there's some good things going on.
Ashley: And you've been thriving. Your garden this summer has thrived.
Ashley: That
Martha: has been nice.
Ashley: You are in your garden era and I am here for it.
Ashley: I
Martha: do love it. I've got a lot of thoughts about it and I've got, I don't want to get too deep into it, but I've got both grubs and voles in my yard and it's a big problem. So do you know what would really help with that though, is getting either flightless geese, or fightless ducks, or chickens. And Zach says no. So anyway,
Ashley: we can convince him. think we can.
Martha: We can convince him of anything. Just look at, look at, for example, I said, let's get married, right? Okay. So, hey everybody, um, season seven, uh, we're going to be talking about all different types of [00:03:00] things. Um, But one topic that always comes up for us for Dear NICU Mama is what is life after NICU?
Martha: And it's this whole encompassing thing, right? It's, it's right when you get discharged all the way up till your kids are adults, adults. And so, um, one of the biggest things that we could possibly talk about is this transition from toddlerdom to schooldom. And it's perfectly time because for those based in North America, or places where it will be fall. Um, , it is going to be the start of the school year. So we thought we could get a couple of our favorite NICU moms from our community together and chat a little bit about this. Ash, do you want to introduce these ladies?
Ashley: I would love to introduce these ladies. So, first up, we have the one and only Kendra. And Kendra, do you want to introduce yourself? We've had you on the podcast before, so hopefully your voice is very familiar. But can you tell us a little bit about yourself?
Kendra: So I'm mom into Kallen who just turned six in July, which is just [00:04:00] wild in itself. but he is going to school full time for a second year and he's our, well, it was our full term medically complex NICU babe. we've just had a lot of, um, different findings actually this past year, and the past school year was a pretty turbulent one, as far as illnesses go, but we've had an uneventful summer, so we are feeling hopeful going into the school year.
Ashley: Yay. I love it. We're so excited to here your perspective and I will never forget the day that you sent us the video of Kallen getting on the bus and then Callen getting off the bus and his face when he lit up when he saw you guys was indescribable. So I cannot wait to hear Kallen's story about being in school and what it's been like for you to send him to school and so thank you for being here with us.
Ashley: And we also have the one and only Sarah, who happens to be the podcast coordinator. So she [00:05:00] coordinated this whole episode!
Martha: see?
Martha: I
Sara: I tried really hard to not be included in this because I hate listening to my own voice but here we
Ashley: are.
Ashley: Oh, but we, we convinced you and we're very glad. So Sarah, can you please introduce yourself? And a little bit about your story.
Sara: Yeah, so um, I'm Sarah. My son Connor is four years old. He will be five in November and he is starting his second year at his preschool, , and he's been in school now for two weeks and so far it's been pretty good. So I'm excited to share, , a little bit about the difference between his first year and now how we've started our second year and um, hopefully give some moms that are listening some, hope that even if it starts off rocky, , it will get better.
Ashley: Yeah. Well, and your guys' stories are unique as well, because you guys both are former teachers, so you [00:06:00] guys also come into this conversation with the perspective of not only being a NICU mom, not only sending your NICU grads to school, but also having the experience and background of being a teacher. So I'm really excited to dive into that as well.
Kendra: I kind of forget that part of my story.
Ashley: I know, it kind of just hit me and I was like, wait.
Martha: then? Have you been busy or
Kendra: no,
Sara: I recently told Connor because his favorite thing to do now is he wants to play pretend school. Um, and he'll ask me to be the teacher. And I'm like, oh honey, I don't, I don't do that anymore. I used to do that and I used to get paid to do that. And now. I, I don't want to be a teacher right now,
Martha: like, where?
Sara: You be the teacher, and I'll take a pretend nap,
Martha: Mm hmm.
Martha: you were like, show me the pension paperwork and then we'll talk. Yeah.
Sara: Yeah, I would like to be compensated hourly for this activity because I'm way overqualified.
Martha: Yes. Um, so, Sarah and Kendra, [00:07:00] you, , are just about to start the school year, or actually, Sarah, you already have because you're in the great state of Arizona, which is three million degrees. So you start a little bit earlier, right? Um,
Sara: mm
Martha: so both of you, how have your feelings changed from last year to this year?
Martha: Um, and what are you feeling as you go into the school year? Um,
Sara: I can start. Um, so, I was extremely fortunate to find, , this preschool for Connor. It's a relatively small school, , and it was recommended to us actually by Connor's physical therapist from the NICU. So I remember when we were looking for schools, , , her children didn't even attend this school, but she was like, hey, this school, I've heard really great things. It's very, . community oriented in that they encourage parent participation. There's the student to teacher ratio is very small. So like as a former educator, all of those things sounded great. , and last school year went. As well as it could [00:08:00] have, um, the school itself is amazing, but the transition , for Connor from being home full time with mom to even just going three days a week for two and a half hours was really difficult.
Ashley: Yeah.
Sara: even up through The last few weeks of school, , Connor had a really hard time at drop off and would have big feelings at pickup. Um, so it was a struggle. So I was anticipating that the school year was going to be very similar. but so far I've been very pleasantly surprised with, just how everything has been going. He has been a little bit more independent, which has been great. He was familiar with his teacher, just seeing her around campus last year. And I think that familiarity made him feel a little bit more comfortable. , And so far, just the difference from the 3's class to the 4's class has been just night and day. And I always tell my therapist this.
Ashley: Mm
Sara: [00:09:00] Um, if Connor's doing well 'm doing well. So, so far it's, it's going fine. Um, we're two weeks in and, , he is doing great. No, no crying at drop off. He goes right in. And, , it has been a long, long time coming though. So. , for parents that are, are worried about drop off, if your kid isn't, uh, particularly happy with you leaving, just know that, , you are absolutely not alone, and you are a good mom, even if you continue to take them back to the school, and they continue to cry, you are doing the right thing, and it will eventually pass.
Ashley: Yeah. Absolutely. What was it like for you, and I know Kendra we'll probably ask you this too, but like, because I'm sure as a teacher and educator, you saw drop off struggles all the time in your work. And so how was it to see that as an educator, but now be the parent on the other side.
Sara So, [00:10:00] my background was with third and fourth grade, so I didn't see it as much, but first year teaching, , at a, a bigger school district. They had, , the first day of school, they call it a boo hoo breakfast, and it's for like the, the kindergarten parents and kids. to like have a little breakfast together before drop off. and I just remember thinking like, uh, because I was not that child. My parents tell me that I like walked right in and was like, deuces. I will see you guys later. Um, so I, I had high hopes that Connor was going to be that child that just walked right in . And was just going to go play. But I think something that we have to remember that sometimes it feels like a long time ago, but all of our kiddos have been dramatically impacted by COVID. And in the amount of playdates and the amount of extracurriculars that our kiddos have been involved in are just not the same as they were. You know, 10 years ago.
Ashley: Yeah, that's a good [00:11:00] point. Yep.
Sara: there just wasn't a lot of experience prior to this drop off at preschool where he had been around total strangers, without mom.
Sara: So this was a really, a really big deal. but I guess just as an educator, I knew it was incredibly common, and I knew, um, that, you know, they say the first two weeks are really tough. , in my mind, I was like, oh, this will last two weeks. That, that will be what the case is and for us, it lasted a lot longer than two weeks because as Martha, as I'm stealing this term from Martha who stole it from somebody else, but my neuro spicy child, um, just knew that, , I don't like to watch him be upset and he was just hoping that the tears would would sway me to take him back home.
Ashley: Mhmm.
Sara: and it was, it was really challenging. But, again, , as an educator, I knew that it was extremely common. And, , that helped me [00:12:00] get by a little bit more. Because I knew I wasn't the only one.
Ashley: Kendra, take it away.
Kendra: You know, you threw in the whole COVID thing and we didn't do like the typical preschool experience with Kallen. So our first kind of like drop off moment was actually at church when we finally felt like we were comfortable enough to send him into like the. Like kids area. And I remember just being like, like he was totally fine. He was all like, Ooh, kids everywhere. But I was like, okay, like there's no nurses around, no one that's familiar with his seizures, like, I mean, and I mean, he's in a diaper
Kendra: just all of these things. And so actually sending him to school for the first time, it was actually like a little summer school thing because of COVID It was a little easier like I was emotional because it was a huge just moment of our, you [00:13:00] know, journey that he was like, able to do this, and in a very typical way, like getting on a bus,
Ashley: Mm-hmm. . Mm-hmm.
Ashley: But I felt
Kendra: pretty comfortable because there was a school nurse and the paras were trained in with seizures and all this stuff I was like, from that side of things, I was pretty comfortable. And the first time was summer. So I was like, okay, germs are going to be at a more minimum, like get our toes in the water. Last year, it was the same way. Like he was so excited to get on the bus. He just sees the bus and he lights up. So I'm really excited for him to experience, just see the bus again this year. I know he's going to be so, so happy to start a routine. but last year. typical cold and stuff. They weren't that bad. He had a lot of moments with, , like bad UTIs last year. And so that was our big hurdle where he was out of school for a lot for that. And then actually last Summer, I don't know if we've recorded since then where I've talked [00:14:00] about this, but he had a life threatening pneumonia we kind of dove into that this summer and figured out like, let's look at his true immune system and how it responds to things. we found out that he truly is immunocompromised by his just different levels. So we're kind of in the process of figuring out if we need to do. weekly injections for that or what, but knowing that I just have this slight hesitancy of sending him back because of what we have coming up with his side.
Kendra: So we have, a sedated dental cleaning at the end of September with hopefully getting T tubes put in his ears. And then December 1st, he has a huge double hip surgery. So it's just one of those things of like, okay, this
Kendra: We truly do have to try to keep him healthy for safety wise, obviously he's just struggles with things, but also because we have the [00:15:00] big dates ahead of us and especially the double hip surgery.
Kendra: So I just try not to get too clouded because I love the routine. He loves the routine. He thrives off of it. He loves his classmates and his paras. He loves the bus. overall, I'm, I'm feeling hopeful and excited, but just have this like back of my mind, kind of just, okay, how are we going to do this? What are, what are our next steps of
Kendra: with these next few months?
Ashley: Yep. Absolutely.
Martha: Oh, that's so hard too, Kendra, and it's challenging because, Ashley, you had this last year with, um, Silas's tonsillectomy, but
Martha: not that they just can't be sick at the time of the surgery. They're, they're, a lot of times they'll say they can't be sick for X amount of
Kendra: Mm hmm.
Martha: they go and under anesthesia and things like that.
Martha: So it's like not, you just can't, not just. Don't be sick for
Martha: but also don't be sick for
Ashley: yeah.
Kendra: Oh, yeah.
Martha: of
Ashley: [00:16:00] Months. Yep.
Martha: and you know, it's
Martha: so hard to get them on the schedule
Martha: i remember you, they scheduled this hip surgery a
Kendra: Yeah, at the, at the end of last year,
Kendra: of the school IEP meeting, I was already telling them the date of it. And so it's just like,
Ashley: Wow.
Kendra: a very, very long time in advance. And, you know, it's kind of hard to be like, yes, we know it's cold and flu season while we're going to schedule this. But we also looked at the dates of that time. So we're going to pull him. I was just talking with the school nurse and she's like, I'm thinking maybe a week before and I'm like, hmm. weeks before because incubation time,
Kendra: time, like, no, we're not risking this. And then actually the starting of November, we're going to shut down like just more virtual church and just it down as we go to really try to prevent it.
Kendra: Because I'm like, we cannot miss the surgery. Cause they even told us
Kendra: much longer, he's going to need a more extensive surgery what it is. And I'm like, no, like he's already going to be casted for five weeks. We don't need anything worse than that.[00:17:00]
Ashley: Yeah. Wow.
Ashley: I
Martha: do love hearing, um, The heart and passion and advocacy you have for Callan. I hope that that's really inspiring for other, um,
Martha: who have NICU grads who have all different types of medical procedures in their future to think about, okay, this is how we do it. This is how it becomes our new normal and how we, how you balance it out.
Martha: And, I always thought your teaching experience was probably well suited for this because you are
Ashley: hmm.
Kendra: yeah, yeah, yeah,
Kendra: yeah,
Martha: it's
Martha: it. It's,
Martha: it's probably, uh, been, been an awesome pairing for, for you to have you as his mom and vice versa. Made for each
Ashley: Yeah.
Kendra: absolutely.
Ashley: And I feel like, too, you probably... Not that this is your responsibility or your job, but I'm sure because of your, just how you plan and how you advocate, you're teaching his teachers a lot. And you're teaching, you know, even how they handle future kiddos who have these large [00:18:00] medical procedures or just more needs.
Ashley: And so, what a gift you're giving them, too, of just like, oh, this is what it takes, you know, to plan a huge procedure like this around an academic year.
Kendra: And I was like, I was saying before we even started recording school district has actually been very incredible this far and they've had a lot of more complex, you know, I shouldn't say a lot because obviously. Pretty rare, but thankfully, there's a couple other families in our district that have walked through similar things. So,
Ashley: Mm hmm. Mm
Kendra: and I I know that's not always the case in a lot of districts, and we've just been very fortunate to have been brought here before he was born, and just have
Kendra: a
Ashley: hmm. Yeah, so important. So maybe, not to go backwards a little bit, but You know, when you both were looking at enrolling [00:19:00] your kiddos in school, preschool or, you know, kindergarten, what were things that you looked for and were really important from you that ensured that your child's deeds were going to be honored and met?
Ashley: Like what were some of the like non negotiables?
Sara: Well, for, for us, um, the biggest thing for me, I knew, to avoid sickness as much as possible, and to avoid Connor being extremely overstimulated, Um, given his lack of social exposure because of COVID and Um, I was looking at the class sizes. so Connor is in a class with, this year I think there's 14 kids, last year it was 12. And
Sara: there's 3 adults. for
Ashley: Hmm.
Sara: kids. So, that was really important to me. Um, the other thing that was really [00:20:00] important to me was making sure that, um, I was really well versed in their, um, in their sickness protocol. Um,
Sara this school does, I swear 50 percent of Connor's day is just like, washing his hands, and I'm
Ashley: Yeah.
Sara: The classroom and they wash their hands, and then they do something else, and then before they eat their snack, they wash their hands. And then they eat their snack, they wash their hands. Like,
Ashley: That was a really good question.
Sara: I'm like, great. If the only thing Connor learns while he's here is good hygiene, honestly, I'm about it.
Sara: Like, we need to not have him sick, and don't get me wrong, like, the second you walk into a child care facility, you are at risk for sickness, I really appreciated their, their focus on, on good hygiene, um, they did have, they do have really strict, like, if your child has, a cough that sounds bad, we're going to pull them from the classroom, [00:21:00] and we're going to send them home, because we don't want this to spread everywhere, so
Sara the class sizes, And, like, the sickness policy were really important for us.
Ashley: hmm.
Sara: just given preschool, my, as an educator, my number one thing for Connor right now isn't the alphabet and the numbers. It's just regulating his, like, social and emotional abilities and learning to find some trusted friends and adults that aren't part of our immediate family.
Ashley: Yeah.
Sara: those were, those were sort of it for, for our family.
Ashley: Sure. That's so good.
Kendra: for us, it wasn't really, like I said, preschool is all virtual and it was just weird and wild. So it's not like we even thought about like law and authority or just like ECFE,
Ashley: Yeah. Mm.
Kendra: um, they're actually like grouped with some, this is like a while ago already, it seems [00:22:00] like that, um, some other students that had disabilities, which was just so funny because half of them are like, I could care less about the screen, like, let's just get back to playing, but through that experience and through birth history from having, you know, Callan meeting therapists leading up to school, I got to know a lot of different names through it. Just those programs and being in the district. And so I already knew of, like, Callan's PT that was going to be at our school.
Kendra: he already knew of Callan through our birth history therapist. And the, You know, it was just like this whole knit community and they're like, Oh, we've heard of Callen through this and so we didn't really have an option.
Kendra: We
Kendra: him we could have, you know, open enrolled in a school nearby, but it still would have been driving him every day and just not that true. Not that riding a bus matters, but like it seemed pretty like [00:23:00] a freeing for all of us and just this big moment. And so we're
Kendra: It's close by. That was another thing. That was comforting for me. If I open enrolled and I'd go back home, like I'd be. You know, anywhere from like 20 to 25 minutes away from his school, where in our old house, we were like five minutes away from his elementary school. So if anything were to happen, I could get there very quickly. And that was, that was nice of having him just right in town. And esque town probably compared to of you. Um, not like the town I grew up in of the town of 800 Mac. But. So, I don't know. I just, I felt really comfortable with the connections that I made. knew there was going to be a lot of germs. I was in an elementary school constantly. I know what it's like, but for us, it
Ashley: Mm hmm. Mm hmm.
Kendra: needed to be around [00:24:00] other kids his age and seeing how he lit up
Kendra: and how he was just loving that interaction that meant so much to us that it was worth the risk of that and we've kept him so sheltered for the most part prior that we didn't even truly know how he would handle a cold or
Kendra: of like We're willing to sacrifice these things because we see how much joy it brings him we want to give him those opportunities and we'll just support and do as much as we can on the backside of it, it comes.
Ashley: Mm hmm.
Ashley: , we would be remiss too if we did not include Martha into this conversation because the day that we are recording this, Martha and JJ had a pretty momentous day of kindergarten orientation.
Martha: Yeah.
Ashley: Woo hoo!
Martha: it. We did it. She was like, I would like to stay here. And then we were like,
Ashley: That's a really good sign.
Martha: She was, she was like, I would like to stay [00:25:00] here. Um, there was all sorts of things. Um, they had a really cute bingo card. So she had to, we had to go through the bingo card to. See all the different things in the room.
Martha: It was really cute. Um, but yeah, so Jacqueline just turned five in July, so she has a summer birthday and she's a preemie and we really talked about like holding her back in a daycare facility, but let's be real. That was so expensive. Um,
Martha: are saving and I'm not joking you 14, 000 by not sending her to , daycare this year.
Martha: So that's, it's, we realize it is a privilege to have this, but we, I was really concerned about just putting her right into kindergarten, particularly in, um, the metro area where we live. A lot of the schools have language immersion. So I kind of was like, I don't know. I'm like, Not only is she not ready for kindergarten, but like let's sort like I she also was gonna learn Mandarin full time and oh my god Can you [00:26:00] imagine I I don't speak Mandarin.
Ashley: Mm-hmm.
Martha: would just be a lot of transitions. So luckily we found out a Coworker of mine recommended some states have this some districts have it but it's a transitional program for kindergarten So essentially it is a specific classroom It's kind of like Sarah described. There's 15 kids and two teachers and a para. And they, um, this big classroom, very similar to a daycare facility. A lot, it is kindergarten in the eyes of the state, but there's more focus on social emotional. And that's definitely what she needs. As Sarah said, she's a little, she's a little neuro spicy. She's got some sensory processing disorder stuff.
Martha: She's been going to occupational therapy. So she really, um, struggles with emotional regulation and we've been doing some awesome stuff with like sensory brushing and all sorts of cool things and, um, Kendra, we're talking with our [00:27:00] OT about getting one of those cool vestibular swings and stuff like that,
Ashley: Mm-hmm.
Martha: because it's, she responds really well to that.
Martha: Um, but we just knew that she needed to be in an environment like that. Kudos, it's in the same district as where my husband works too. So they are right next
Martha: a lot of things that lined up. So I will say we did a lot of research ahead of time to try and figure out what made sense to us.
Martha: And I just want to acknowledge too that we had options that probably other people didn't have. Like having access to a transitional program. Um, You know,
Ashley: Mm-hmm.
Martha: full time care before, there's just so many elements to it outside of the idea of your NICU kiddo maybe having additional needs or having a perspective that you might want to consider as well.
Martha: So that I want to just acknowledge, we're really, really blessed to be where we are. I
Ashley: Yeah.
Martha: So yeah, we feel good about it. I mean, I saw the Barbie movie and then Hershey turned five and I [00:28:00] just like sobbed for 48 hours straight. So I feel like I got it all out. So then I'm just, I'm just waiting for kindergarten day.
Martha: It's going to be very weird. I did start to dissociate the second we walked in. There were so many people. And that's one thing that I. Has never really occurred to me is that she's not been in that consistent group of crowds that often and I know there'll be teachers They're helping her but I'm just you know, you see your small child next to like sixth graders who
Martha: cast of Riverdale and I'm like I can't It's just very overwhelming.
Martha: It's a big thing, especially when we've had all of these other formative experiences with our kiddos. So who knows how I'll feel, but I'm in, I'm in like bi weekly therapy. So I feel like that's, that's what I need to be doing right now.
Ashley: I think that's important though to note is that, you know, set yourself up for success leading up to these huge milestones. Like give yourself those buffers [00:29:00] of extra therapy or just like phone calls with friends that understand because it's a huge, huge transition. And not to put you on the spot, Martha, And you don't have to answer this if you don't feel comfortable, but, the emotional aspect of sending your kid to like big school is a huge transition.
Ashley: Turning five and all of a sudden they're like this little adult, you know, like, , how was that for you even just preparing for kindergarten as a NICU parent?
Martha: I was like, is she going to bring up my little, my little midsummer minty
Ashley: No,
Martha: beat?
Ashley: I'm not. No, I'm not bringing up the men TV. I'm just saying like it's a big transition for a lot of people.
Martha: that's totally okay. And
Ashley: There was
Ashley: a lot more going on in that than just that.
Martha: factors, but
Ashley: were some other things.
Martha: be totally transparent, it was, uh, around her birthday was a real rough time for my mental health. I was really struggling and there were other, like you mentioned, there were other environmental factors.
Martha: Let's just leave it at that,
Martha: that were contributing to the[00:30:00]
Martha: mental state. But I will say, and Ashley, Sarah, you guys were very much there for me. So thank you for being. You know, tolerating me, but I will say it was really hard and I wasn't anticipating it.
Ashley: Mhmm.
Martha: there was a couple of things about that, right? Uh, the finality of that time of life for us felt really. overwhelming. I felt a lot of grief about JP just feeling like that experience in his life felt really distant from what our current reality was. That this is something he'll never do, right? It was, there was a lot of stuff soaked into that and we have so many incredible moms in our community that I know are also loss moms. I can think of just a couple off the top of my head who are also multiple moms who had a lost twin. And so how emotional it is to see those kids going through. And all you, you, there's, it's almost kind of like there's like a little shadow you. And, uh, you don't want it to go away because it's [00:31:00] also this, an important part of your life. Uh, but also even just today, people were like, How many kids do you have? Is she
Martha: or your youngest or what do you do? So then you talk about it, you know, and I, we tell the teachers right away because, you know, JJ's going to come in and be like, my brother lives in the stars with Jesus. And I, and I want her to say how, whatever.
Martha: She feels,
Ashley: Mm hmm. Yeah.
Martha: cool and powerful. But this idea that like fall comes, the start of year comes, it's this big passage of time for everybody.
Ashley: Mm hmm.
Martha: this like red leaf fell down in our driveway the other day. And JJ was like, look what JP sent to us. And I was
Ashley: Oh, that's so beautiful.
Martha: that's, and I, I appreciate you acknowledging it because I, I was going to bring it up to you. It's just a big thing.
Ashley: Mm hmm.
Martha: are all survivors of trauma. So not only is our transition, it's difficult for our kids who have differing needs and
Ashley: [00:32:00] Mm hmm.
Martha: are, you know, their abilities are on a, on this huge spectrum, but it's also complex for us too.
Martha: So it's, it's important to
Martha: So I think I was. I have a really great support system. So, you know, a lot of those people on this call are on that support system.
Ashley: Mm hmm.
Martha: And, um, so that's really important to me. And being really vocal with my, like my providers, my care
Martha: and my family members was important too.
Martha: So,
Ashley: Yeah.
Ashley: I know I speak for all of us listening. Thank you so much for being vulnerable and for sharing that because I think, again, anytime that we share those honest vulnerabilities, it makes another person feel a lot less crazy and a lot less alone.
Ashley: so, you know, as just this gentle reminder that if If this time of year is challenging, it makes complete sense why.
Ashley: And it's so wild [00:33:00] because when you're in the NICU, you see your little baby and you're like, what will it even, it's hard to even fathom life outside of the NICU and then all of a sudden you're experiencing it and it's sometimes really hard to be present for it. I know for me, like, Those, these big, beautiful moments you dreamed of are in front of you and they're so overwhelming that you're just like, you feel kind of frozen.
Ashley: And it's just wild to see these babies who've overcome so much all of a sudden doing things that you dreamed of. And it's like. What? Like, this is insane. It's insane. And even talking to parents who have kids that are like 16 years old, I mean, we talk with a mom often who has twins who are now like in college and she's like, I still think about how they overcame so much as babies.
Ashley: Like that part of their story never goes away. And it makes these big graduations and moments even more momentous. Cause I remember wondering if it would ever happen,[00:34:00]
Martha: Yeah. That's so true.
Ashley: Well, maybe on, you know, as we kind of get closer to the end of this episode, let's just chat real briefly about just like practical tips of how you maybe A, prepared your kiddos for school and B, how you prepared their teachers and worked with their teachers to make the year as successful as possible.
Kendra: So for us, there wasn't a lot of, like, needing to prepare. I shouldn't say needing, but like, there wasn't a lot of ability to communicate with Talon just because of his disability. You know, we would talk through things, but there's just not that, like, reciprocating, like, your understanding.
Kendra: He's asking questions, nothing like that. Um, so for us, you know, it was a lot of the preparing through church and, like, having those things right away telling my family. So for one of like, I'm going to know if things are going well or not by how he responds to getting on the bus. So I kind of like watched for those cues. And I really communicated [00:35:00] with his whole entire team by just detailed email. Like it's okay, like you can be that parent. have my permission to be that parent of just like having those. Thorough for your child to whoever their
Kendra: like, because every child is unique. But especially when you have just different things, maybe adding on to that, like different diagnoses or you know, just different abilities, it makes your child more complex and they want to be able to know and help your child too, remember, 90, I would say 90 percent of educators want to be there to help your child and they want to be able to see your child grow and flourish. I think there's some that are just like, was out of this and for a while and I shouldn't be in it, but we're just going to roll with it. There's a lot of exhaustion in education, but I think 90 percent of them, they [00:36:00] desire to do that and they want your kid thrive.
Kendra: so you communicating their needs is going to help them help your child. So I
Ashley: Yeah.
Kendra: I remember. Ending an IEP meeting, and I was like, this is just like, this was a mess, like, technology was all over the place, and I was talking to, um, she was like a freelance therapist, because, um, there was a maternity leave kind of thing, and she pulled me aside, in church actually, because she goes to church, and she's like, Kendra, you can ask to have another IEP, and you can advocate to have it in person, so there's not those things. So just, End of recording. okay to just be a little pushy and to get those,
Ashley: hmm.
Kendra: needs across and to be able to communicate and feel like you're heard and understood. And they, most educators and everyone on the team are very for that and open to that and there were no [00:37:00] issues on our end. So that really helped prepare. him because they were better prepared on the back end for him.
Ashley: And not to put you on the spot again, um, but how important was it for you, for Callan to be in a classroom? I mean, like, what is his classroom structure like? Is he with other kiddos that have disabilities? Like, what does that look like for him?
Kendra: the percentages last year, but this year he'll be at about a 60 40. So he'll be pulled out about 60 percent of the day and then the other 40 percent he'll be in the room. Now when he's pulled out, he's
Kendra: like, it's a standard thing that a lot of parents with kids with disabilities have to really just like wrap their heads around because you think like, Oh my gosh, he's getting. you know, let's say physical therapy three times a week or whatever it would be. No, he's actually like in a group therapy most of that, like 60 percent of time. And so at that 60 percent he's with other kids with disabilities. And they kind of range in complexities, [00:38:00] and then, um, the special ed teacher along with the paras kind of individualize how they need to be through those activities. So, for us, it was really important to communicate that, overall, honestly, I don't care what he learned education wise. Like, for me... And for Tyler, we were both just like, no, like, I don't care if he's ever able to spell his name or, you know, like those kind of things or identify letters. It was more so we wanted him to begin to learn how to socialize with other kids and just pick up on different, more of those, like, what do they call it?
Kendra: Like the norms, like society norms kind of thing. Instead of like taking food
Kendra: and throwing it, like, I wanted him to be in the classroom so that he could watch other kids using. utensils to feed himself.
Ashley: Right.
Kendra: they were all for that. Like his entire team out a way that he can be in with his peers as much as [00:39:00] possible.
Ashley: Mm. Mm.
Kendra: away for like diaper changes and meds and all of that, just really good about getting him involved with his peers and his peers love being involved with him. So that's really incredible too.
Ashley: Mm.
Kendra: that was
Ashley: It's beautiful.
Kendra: was pushing for him to be with kids as much as possible.
Kendra: And then when I learned that he would still be
Kendra: disabilities when he was pulled out, that eased my mind, and the percentages kind of were just like, meh. But although, think
Kendra: of saying it, Ashley, before, is Not only have the educators learned from us, or from Callan, but the other students, they learned that empathy
Ashley: Mm.
Kendra: differences and just the grace and how to interact with kids with disabilities by him being included. So, that's
Ashley: Yeah.
Kendra: really incredible to watch.
Ashley: Incredible. Wow. Oh.[00:40:00]
Martha: shared a little bit of an anecdote before we started recording too, um, and I know Helen has had a few really special relationships
Kendra: Yeah. Yeah.
Martha: uh, and I think that's really cool to talk about because one of the outcomes of having kids with disabilities integrated general ed kids is that you get to see relationships flourish that those opportunities didn't really even exist when we were in
Martha: that, you know, so it's so cool. Um, would you mind sharing a little bit
Kendra: Yeah. Towards the end of last year, I got an email from his school teacher and she was like, one of the classmates wants to have a playdate with Callen over the summer, but I can't send your information over. So if you write it on a piece of paper, I can send it home with them. And then you guys can coordinate on your own. I was like, okay, wrote it down. And it was about a month later that I got a text from my mom and I for like two days because I was like, I don't know how to respond to this. She was like, Kendra, I got your [00:41:00] note about connecting this summer and we would love to, and I'm going to, you know, not say names or anything like that, but was like, how do I respond to this?
Kendra: Like, does this mom know that? My son is, severely disabled, that he's nonverbal, that he's in a wheelchair. Like, is this student disabled? Like, did they meet in their pull out classroom? I just was left with so many questions of, like, how do I even begin this text? And so I kind
Kendra: shared, like, oh, hi, I'm not sure. If your daughter shared with you, but he's nonverbal and, you know, it's all these things. And I left it. Thankfully his birthday party was coming up. I had left it as a like, if you you're more than welcome to come join us. It's just a small get together for his party. she was all excited. She was like, we are open that weekend.
Kendra: We would love to come. Do you mind if my husband and son come? Absolutely not. We'd love to have you all. And it was about like [00:42:00] a week leading up to it. And she goes, Oh, My daughter really insists on getting Callen pots and pans for his birthday. my heart just, like, melted. Because Callen's favorite things are pots and pans, like banging on pots and pans.
Ashley: Ha ha ha.
Kendra: to get him happy, or like, encourage him while he's in his stander, or like on picture day, they'll say like, pots and pans, pots and pans, to get him to like, light up and smile and be happy. And so she, this sweet, sweet, like neurotypical child, just desired to get him pot hands because she knew that that was his favorite. the, the family came and that's what they got him. And he was just so happy. And just a lot of times you can just tell like this whole entire family was just the most genuine and sweet family. And did a lot of talking with them and she's like, no, I didn't. [00:43:00] understand the complexities. She, talks about him all the time and she just loves to, um, just help him out and push him around and play with him. And I just got a text
Ashley: Mm.
Kendra: the other day asking who Callum's teacher was this year and they're in the same classroom.
Ashley: Oh, yay.
Kendra: it's just, it's really heartwarming and I know on the back end the teachers are like, told us that we try to keep those kids that love on him with him because they will show others and teach others how to do the same. Yeah.
Kendra: It's been,
Ashley: Oh, that's so beautiful.
Sara: So Ash, you had asked about what, , what were some things that. We did to, , prep our kid and then like prep the teachers. So a lot of times as a former educator, um, teachers will send home like surveys. my teacher, my teacher pitches like as a parent, please fill those out, write down as much as you can.
Sara: [00:44:00] Like when they ask you questions like, what motivates your child? What does your child not like? Um, you know, those types of questions. Um, want to know and need to know the answers to those. Um, so they can help provide a safe and supportive environment that is for kids to want to come to school.
Ashley: Yep.
Sara: so I would say I'm, I'm thankful that our preschool, um, sends home these like very long. that they want answers to. Um, the other thing that I had to fill out is I know the NICU mom community knows the stupid ASQ surveys where they're like, Have your child do this activity? Do they, can they do this always or sometimes or never?
Ashley: Ha.
Sara: Of course, there's stuff on there that I, I get so triggered by these surveys because it's, it's literally a comparison game. They want to know like where the kids are, um, as a whole and [00:45:00] wow, that's great. And it's. useful information as an educator, as a parent, it doesn't feel good when you go through and you do those things and you realize that your child has scored a zero in fine motor skills, right?
Ashley: Yeah.
Sara: so, uh, all of, all of that information is extremely important for the teachers to have. Um, so I'm thankful that, that, um, the last two years Connor has been very blessed with amazing, amazing teachers. Um, And we have given them all of the information we can, um, to help them work with Connor and his spicy personality. Um, though I will say our, our, our latest struggle was I picked Connor up from school on Monday and the teacher was like, Hey, Sarah, um... I had read all his documentation about what he's working on in OT, but we were doing stuff with Play Doh, and they were, like, rolling the Play Doh out so they could make letters so the kids could spell their name, and Connor would refuse.[00:46:00]
Sara: He was refusing to do it. Can he do that? And I was like, yeah, he can absolutely. He loves Play Doh. He's definitely, like,
Martha: Sir. Mm-hmm.
Sara: a Connor thing. He's like, Oh no, I don't do that. so
Martha: by the way, I wish you guys could all hear how Connor like refuses to do things. 'cause he is just like super so casual sounding. He's just like, you'll be like, I'm good. And we were like, excuse me.
Sara: yeah, he'll be like, Connor, do you want to like sit in color with JJ? good. So, anyway, and the adults think it's funny, and it is funny because and he talks like a little adult, but anyway, I'm not doing that. Um, and when he got him, I was like, Hey, what was up with the Play Doh thing today? And he was like, Oh, the Play Doh was way too soft. oh god, okay, we'll work on this in OT. Um,
Ashley: the play doh was way too soft.
Sara: he was like, no, this is, this is like fresh play doh and I don't [00:47:00] mess with fresh play doh. That's not something that I do.
Martha: gosh.
Sara: just still learning our kids
Ashley: Yep.
Sara: and things that will set them off. Um, so, uh, the other thing that I'm very fortunate because I am not working a nine to five is I'm on the executive board for the preschool. And I think it, it, To be as direct as possible, you don't really, teachers are less likely to mess with the kids of the parents that are on the PTA, right? Like it's just something that you know and, but, but the other side of it is it's helping make, make sure that the school is inclusive and, and doing these great educational things and making sure that Connor has the best educational experience possible.
Ashley: Yeah.
Sara: the time and the ability. Um, I know that almost every school is looking for, like, parent supports, um,
Sara: way that you can kind of get involved with your child's education and help make sure [00:48:00] that, um, you're always in the know for what's going on today.
Ashley: So good. Martha, I know kindergarten is next week, but how have you been kind of working with JJ to kind of, I mean, I'm so glad she loved it. That's a huge, huge good sign,
Ashley: like, is there, JJ, um, but is there, is there anything that you've been, um, Kind of talking with her through just to kind of help prepare because JJ also doesn't love change.
Martha: She doesn't. She also doesn't like funny smells.
Ashley: Oh, schools are really smelly too.
Martha: this is, I'm not even, I'm not even joking you. I went in the school today and I was like, this smells pretty good. one of her least favorite smells is lunch food. And y'all know what
Martha: lunch food. And
Ashley: We, I can smell it now. It's like bringing me back.
Martha: Yeah. She sometimes will refuse to eat food if it smells bad.
Martha: If like the lunch, if the area smells bad. So I'm really [00:49:00] looking forward to seeing like how the sensory
Ashley: gonna be president.
Martha: Yeah. Well, CBD president of the, the smelly food club, I guess,
Martha: It really helps her to do, um, her sensory brushing and we do like a little exposure things.
Martha: They call it like sensory hygiene practices, right? Um, so we're doing some extra practice with that. And then, um, Also, you know, there's a period of time when she'll be home during the day, and it's just her and me, actually, so we've been doing a lot of stuff to get her, so she has a little desk in my office, so we have matching desks, and we've put together a visual, uh, menu of different activities that she can do, because structure's really important to her, so she helped
Ashley: Yeah.
Martha: she helped put
Martha: activity area, Um, and so, and we've also been doing things too, like we, we did her pediatrician appointment license early in the summer so we could talk through whatever we needed to as well. Um, sleep has been an ongoing issue for us, so she helps us kind of [00:50:00] strategize how we could make sure kiddos get sleep because, I mean, um. Kendra and Sarah, you know, like that, that transition even like between like you jump from home to daycare and then daycare to preschool and preschool to school and like the exhaustion levels just like go up crazy. So we're just, we want, she just really encouraged us to, to make sure that we get like the basics done. Is she getting enough food to eat during the day? Is she getting enough sleep at nighttime? And that's important for all kids, but especially these kiddos. Um, And
Martha: and parents, I slept on the ground last night. Um, so I also want to bring up too, she's asthmatic, Jacqueline is asthmatic, so it's really important, um, too, that we, we touch base with her respiratory care team to talk through what that looks like, uh, to make sure that we had extra. and things too. It's just all this like kind of preparation because that's all we can do because there is going to be so much mystery of it and that's the crazy thing like Kendra you talked about [00:51:00] like literally you just like wave goodbye to Callan on a bus that like I'm not going to go into the school again now until parent teacher conferences, right?
Martha: Oh, another thing I did, um, too, was, and this was actually great, we were encouraged by her daycare facility to do this, is to get a map of the school. I know that sounds really
Ashley: Oh !,
Martha:
Martha: Okay, she's not, she's not going to have a nap time, right?
Martha: So she's going to have rest time. How close is the bathroom? How close are these things? You can walk through them with her because there's a lot of things, you know, um, with all these different kids and all their, you know, and who they are right to understand. Um, but yeah, I
Sara: She's perfect.
Martha: it's prepare as much as you can, right?
Ashley: Yeah. Mm-hmm.
Martha: Um, I found like there's some mom groups that are helpful, but mostly I feel like just going directly to the source, going directly to the principal or the teacher is what's been most helpful in figuring
Martha: the reality is for this school.
Ashley: Yeah. Absolutely. So good. I love the map idea. That's really great. [00:52:00] Well, due to, um, busy mom life, we are at the end of our episode here, but I just want to thank each and every one of you for sharing as a mom who will be adventuring into that world next year. This is very helpful information as we prepare for that.
Ashley: Um, but to all of our moms listening, we just want to acknowledge how significant this time of year is and how significant this change in season and academic year is. And if you are finding yourself feeling overwhelmed, overstimulated, all of the above, just know that you're not alone. Um, our hope is that throughout this episode, it's been reiterated that it's a big, big transition for NICU families to see their little miracles out in the world officially and also acknowledge the work it takes to advocate.
Ashley: Um, we want to commend you for doing a lot of this back end work that sometimes I'm sure just feels incredibly exhausting. But know that, , we are so incredibly proud of you and we see it. And, um, it does not go unnoticed. And your kiddos are so, so [00:53:00] lucky to have you as their mom. So thank you for joining us.
Ashley: We are celebrating. all of the beautiful milestones that these NICU grads are accomplishing every day, and we know it's going to be a great school year. So, uh, we hope this episode was insightful and helpful, and we will talk to you guys next week.
Outro: Thank you so much for listening to this week's episode of the Dear NICU Mama Podcast. If you loved this episode, we'd be so grateful for a review on any of the podcast platforms. And we'd love to continue connecting with you via our social media pages or a private Facebook group. And ultimately, my NICU Mama, welcome to the sisterhood.
