0:01
Hey, everyone, we're here with Courtney and Markeisha. again for another podcast episode. And this time we're going to not give you tips. Well, there might be some tips in there, there probably will be tips in there because we can't help it. But we're just going to get a little bit more personal here today and talk about all not all things because we'll probably have a part 234567 on how we failed and how we handled our kids when they got diagnosed with their disabilities. Hey, Courtney.
0:36
Hey. Yeah, this is an important topic, and one that I think some of us deal with very privately and maybe even a little bit lonely. Like, we don't necessarily, I don't remember talking about it with my daughter as much as I had more support with my son, and the differences in those two journeys, pretty much night and day. And I gotta tell you, the second one was a lot better. It was a lot less emotionally draining, and I didn't feel as alone. So I definitely want that for our listeners. More than what I experienced originally with my daughter right.
1:16
Now. Tell us for the for any new listeners. You have three kids. Yes. And their ages are. So tell us about your your babies.
1:28
Okay, how does the teen Lily 16 And my youngest, Evan, he's 10. So that was, yeah, there's a little bit of a gap there. But he's our Caboose. Yeah, and my oldest Hannah, I actually found out that there was some complications during my eighth month of pregnancy. They didn't really know what was going on, but there were some markers there. I just remember feeling devastated. I just think that there's what you think your motherhood journey and being pregnant is going to look like. And I just felt like, in that moment, it was like derailed, and I did not have a really clear path to getting back to being okay like I felt really unsure like what her birth was going to look like and it was not in the what to expect when expecting book
2:28
needs to be revised.
2:30
It was it was traumatizing her you know, her birth into ended with an emergency C section after 35 hours of labor. Three hours of pushing. It was Oh, yeah. My friends were like, I can't believe he had two more kids. I was like, I'm a believer it things get better they go next.
2:56
Now you probably won't want to hear this. But I all three of my Labor's and you know, my, my last my Caboose was adopted. So I do have four kids, but I burst three of them did not even equal or eight flow to flow out wait four hours apiece. So you've reached that with one with.
3:19
I went through three shift changes, something like that three or four shift changes of nurses. And the last nurse was like, I'm not leaving until this baby's here. Like she refused. She refused to leave me and I just always remember her kindness because when I went to have an emergency C section, she was supposed to be getting off. She's like, No, I'm not giving us mom, a brand new nurse coming into shift, you know, and she's already been through, like so much in the last, you know, 34 hours,
3:49
your whole birth work stories. One? I am. I am traumatized for 35 hours with one child. I don't know.
3:59
Yeah, we were in the hospital. Almost a week and she was on the little NICU on the bilirubin lights. And so yeah, it was just a lot happening. And then she wasn't born they thought she was going to be born with Down syndrome. My daughter doesn't have Down syndrome. And so really, we were sent home with oh, I guess we were wrong. She just she just kind of has a larger head and everything's good. So that's how I was sent home so I go home and then things aren't going the way they should really and she's not developing her milestones and so I kept saying what's going on? You know, she's she's not putting her feet on the ground. She can't hold her bottle you know, she's having trouble sucking on her bottle like you know what? All you know, you're just a first time mom, you just need to relax. I heard that a lot. Just need to relax and every kid develops on a different timeframe and really minimizing my concerns. So she was about a year old just after her first birthday, I finally was like, something isn't right. And not in the sense of something's wrong with my child, but just that she wasn't where other kids or age were. And I just didn't know how to help her. And I was feeling really alone in that and like, hey, how do I help her? She's not crawling, she's not sitting up. Really anything that was on the chart, she wasn't any of them. So finally, I got a referral to the Children's Hospital, Seattle Children's Hospital, and finally got the ball rolling, rolling, but actually, who helped me finally, I forgot about this part was Headstart. Because, you know, Headstart. Yeah, I was working at Headstart. And my mom brought Hanahan for lunch break, because, of course, as a new mom, I always wanted to snuggle her boss possible. My mom brought her in. And it was actually when they laughed. Her name was Rosa Rosa said, oh, what Early Intervention Services is your daughter getting? You know, for her delays, I burst into tears. And I was like, zero, because other than me, you were the only person who really believed something's going on. And so Rosa got to work. She, she got me all set up and the came over and they're like, oh, they probably nothing's going to happen, you have to have so many deviations from the norm, so many points. And it's, it's really hard at her age to get all the points. And then when the lady was done, she's like willing your case, actually, she has enough points. So. And that was the first introduction to being like, points from the norm. Like all these words, I'd never heard of
6:54
that wasn't in the What to Expect When You're Expecting. But
6:58
now that chapter was also missing. That chapter is missing,
7:01
wasn't there? Wow, I want to go back to something that you said. Which was, Where was your pediatrician?
7:12
Oh, yeah, my mom, my mom, huh. So I don't know if it caught I would call it a mistake. uninformed. I didn't have a pediatrician, or an OBGYN. I went to a family practice. And technically, they can oversee your your pregnancy. I do regret that because she couldn't even do my emergency C section when the time came. She wasn't licensed, you know, to do that, or had privileges. So we had to call in whoever was on call to come and rescue me. And then I think I was just again, really shows like the overwhelm, just stayed with the same lady because I like I least knew her, whatever. And that's when I was like, after Rosa told me like, no girl like you, you should be getting these services. Then I went and found a pediatrician and got started with that. And that's when really when the ball started rolling with early intervention, and all of that. And I know we talked about, you know, really wanting to support families with that, because it was completely overwhelming my first baby, new mom, all the the normal, postpartum, and all that. But on top of that, I was trying to navigate all these systems of care that I never heard of before. And nobody was really coaching. My husband and I no one was really saying this is, you know, here in Arizona, I live in a different state now, like, we have a whole system here. And if they had that in Washington, nobody in my circle was telling me about it. So here they have a whole system of like, you would go home, and you would have like a case manager helping you I didn't have that. I was just like whatever Courtney could find.
9:05
That's the same as gin, which should we'll have her on the podcast to her since 18. To you and just the the services that we have. Now, she just navigated her own way.
9:22
Yeah, you can do it and it's just a lot harder. It means when you have a parent coach or somebody who's gone before you and really knows the ins and outs of qualifying for things, what steps to take, and we're gonna get into that like why his son's diagnosis was night and day compared to everything I went through with my daughter because I knew the systems of care in my state now because of her and going through it, but to my friends and my support system and the network I have now when he got his diagnosis I was it was more like confirmation Should I have something that I could, I just needed to name for it to open the doors of services, I needed diagnosis, but I kind of already knew what the diagnosis was. I just needed it confirmed, so that I could open the doors of services for him. But I never felt hopeless or it was more like, okay, now I have, this is what I need to do next. And it's not that his road is perfect, but I know lots of different people who have autism. And I know, on Instagram, I'm following different therapists are showing a different way to think about it and how to support them. And so I was just filled with hope of, I can, I can be the kind of mom he needs, and I can help him get access to these services. versus my daughter, I felt I literally felt like I was failing her. It makes me cry, because I felt like I was trying my hardest. I was like, we we spent so much my car my Million Dollar Baby because we spent so much money having her and so I was medical bills, no one, no one helped me say, Hey, you, you could apply for grants, or you could do this. So I was buried under medical debt without anybody helping me understand that there was grants and services out there for that. Just lonely, overwhelmed, and just feeling like, every night when I went to bed, I just distinctly remember, you know, Craig would hold me almost every night. And I would just cry because it was like, another day of struggle another day, I have no answers, you know, and so if that's you, like I just, I'm here for you, like we're here for you. Because it's a real feeling. And until you get grounded with some services and some support and help. That's the feeling that you have, because you know, there's something out there that could be helping your kid but you don't really know what it is. But you just in your heart, you know, that there's like, if they could get speech therapy, not that it would fix them, but it would like support them with this while we help the parent and the child navigate that. But I do want to share like when Hannah started PT, I remember telling her physical therapist, I am so excited. We're here. Hannah's going to be walking by Christmas. And I was just, I knew it. And K Hannah's 18. Hannah does not walk independently. So can I walking by Christmas? Okay. But, and I remember months and months later, after Christmas had passed, I finally said to her physical therapist, why didn't you tell me that I was. That was not going to happen. And she was like, in my experience, you have to come you have to come to your own realization. Because if I tell you, you're gonna say you just don't, you just don't believe in my kid like, this is what they do. But physical therapy has helped Hannah in numerous ways, what my mindset at that time was, okay, we're going to get this and it's going to make everything better. And I think a lot of families can relate to this kind of icon misconception, because we want so badly for our child to be able to go into the world and, and have the skills they need and be accepted. Right, this deep desire for them to not struggle. Yeah. And that's why our hope is like kind of hung on this therapy, or this is going to really help them as well. But I think if I could give, you know, we said no tips, but here we are. A mindset tip would be be open to the process. And notice, one thing that Hannah's really taught me is to look at all the little things within the bigger goal that she that she has hit and the things she can do today that she couldn't do. Back then I'm so grateful Hannah can sit up independently she can she scoots around the house, I've done it to try it out. It's a full body workout.
14:18
Body only imagine,
14:21
yes, coding with your bottom and using your hands to kind of balance you. And she gets from A to B like that. And then she learned to crawl at eight. She crawled in her classroom. Her teacher knew what that meant to me. She called me up she was crying. I was crying. Hannah crawled over to the mat. She just she just did it. We worked on it for years and then one day Hannah's like crawl today. She just
14:47
what would I what would make them let me show them what I can do today?
14:51
Yeah. So I call that all the things that our kids are learning and it's just there is no timeline for them to you You know, demonstrate the ability of sometimes and so yeah, we worked on balancing, you know, tall kneeling all these things in PT for years. And then one day she put it all together, she put the pieces together and she crawled and she she still crawls when she feels like it. But her mom, her main method is scooting. But when she's out of her wheelchair, but it was like, all of that was just lonely, all of that navigating doctor's appointments, diagnosis is because Hannah has a main diagnosis, but then she had a lot of other diagnosis is, and then this past year, we actually found out she has a rare genetic disorder. And so it was kind of like, rediagnosis day for me this past year. And it was it shook me. I was like, Oh, I thought I was a got this, you know, but hearing that, and knowing that it was going to cause her more struggles was really, really hard on me emotionally.
16:01
Yeah, that's what parents out there to know that it, it is hard. And, and I know there's a lot of, I don't know, chatter in the weather on the internet's Yeah, about you know, fixing and, and I don't feel like, like, when you feel like hopeless or things like that, it's not that you're not do feel like that against about your child, but you just think of the struggles that they have, you want to protect them. The moms instinct is to protect and you want these skills, right to be like, they, I can't protect them, if they don't have these, you know, these skills? Yeah, someone comes to you and is like, Hey, your child's diagnosed, and they need all these things. And you're like, yes, give me all the, you know, give me all the things. And I like that you use the example like, yeah, she's gonna walk before Christmas, you know, because you're still like, well, she's gonna need those things to play on the playground to you know, talk to their friends and all those things, but that they let you come into your own reality of what their what her disability, you know what her disability is. And I think all parents need to know that it's okay to go through those different stages. And that doesn't necessarily mean or doesn't mean that you don't love your your kid and that you want to change who they were. And all those, you know, different narratives that are out there, think that, you know, you just want what's best for them. And you start to think and we know now, the reality of some of the things that Evans experienced and Josiah is that there's in there's not some, there's some people that just aren't nice out there. Right. And I still get choked up when I think about what happened to him last year, because I was like he, even though we tried to teach him the skill set that he needs to stand up to somebody who's bullying him, he still doesn't do that. And I just, you know, it's just, oh, man, if I would, I don't want him to be in that situation anymore. So it does make me like, if I could better help him understand that, you know, the concept of yeah, when someone's beating me, I would, because I don't want him to get beat up in the bathroom. You know, I don't want him to be picked on our getting choked up item.
18:39
Yeah. Things that are going through every parent's mind when they're getting this diagnosis is that kind of overwhelmed of all the multiple things that need to be put in place, and also finding balance in that that's something that took me a little longer than I would have liked to find the balance between all the things that are available and what is actually humanly possible to do in a given week. And knowing that I could pause therapy or say, you know, this is a lot for us right now. We're going to focus on communication, not that PT is not important, but I working full time, trying to get her to appointments, managing all of that, plus doctor's appointments, it was just like, exhausting. And so, you know, my husband had really helped me. Yeah, they had to come in and be like,
19:36
husband and you have they have their other kids came?
19:39
Yeah, trying to manage all of it. And so I want parents still there. It's okay to to have the recommendations and have that available and really take your time and figuring out okay, what can our family do right now and this season doesn't mean this what's going to be They're forever. But in this season, right when, when Lily came pretty close, right after Hannah, there two years, two weeks apart, so it was very close. What can I do in this season, you know, I'm going to need to be I needed therapists that were welcoming of Lily, you know, I had to let someone go that really wanted me and Hannah, and I was like, Well, I'm home with my other baby, too. So we need to incorporate her. So I always joke that Lily got early intervention. And that's why she's such a super reader is all these early interventions alongside her sister, and she learned to sign and she was signing before she talked. Because that's what was being modeled around her. And so I needed in home services so that I could accommodate nap schedule, right of her sister and to have taking the two of them out with the wheelchair. And a toddler newborn was really challenging. And so sometimes I had to say no, because I was like, no way I can do a one o'clock therapy appointment. And this season of my life right now with this other baby. So that's okay, too.
21:11
It is okay. And we have been I know you, when you're working with families, to me also there, they are doing all the things and they're missing the naptime. And then everyone's stressed out, the siblings crying, and you're trying to do the therapy, and you're trying to get here. And that just doesn't work out for, for anyone.
21:29
Yeah, long term, you know, you anything short term, but really think about that, a year long of this therapy session, this therapy time is that going to work for me and sometimes, and I've said this to families, and they've said, You're a wonderful therapist, but you're just not a good fit for our kid. That's okay. My therapy time doesn't have to work for every family. And I might not be the right therapist for every child. And that's okay. And the nicest thing that a mom ever did to me was just called me and said, I've seen you the last six weeks, you've been really trying, but my son is not warming up to you. And I wanted to let you know, personally, that wasn't personal. It's just he's not warming up to you. And I don't want to, you know, essentially, waste this therapy time, this money, we're investing in this service, if it's if it's not the right fit, but I wanted to let you know, it wasn't personal. And that really helped me out because obviously, I want i i take things personally, you know, but so but her calling me and letting me know, that really helped me know, like, this was just the best decision for her family. And then it really had nothing to do with me, it just wasn't the right fit for him. And so we we parted ways. And they went on to try to find a different speech therapist, that was maybe a better fit for him that happens to
22:52
Yeah, it does happen. I, we went through a few here when
22:59
we'll talk about I know you had like, a certain amount of intervention that they wanted your son to go to, and I know that something that certain kind of therapy intervention, and it can be like 20 to 40 hours a week how to do are you willing to talk about it? Yeah, we have to? How did you navigate that? When that was like what a recommendation, something he qualified for?
23:30
Right. And it was different because he was in foster care when he got diagnosed. So when those things come, they're like, I don't wanna say court mandated, but we have to, it was just a whole hoop hoops to jump through because we did not have parental rights. When he moved in. He came in and foster care. seems so long ago. Um, because now he's just like, like, like a birth, like a birth stem. But yeah, it was a lot of hoops as a foster parent to get the the things that he needed. Because I didn't have the parental rights. So things would have to go through a recommendation, like I would be concerned, taking the pediatrician, the pediatrician had to get, you know, orders from them, take it to his social worker, the social worker would have to take it to the judge. And the judge getting approved because he was essentially a ward of the state. And so they made all the decisions for him. We worked on that getting that changed right away because we already knew that something else was going on. He wasn't speaking. Lots of things. Leaves lining up stuff. That's really what we noticed, but me and my me and Dre are both special education teachers. So sometimes we're like, have you seen this? Are we just not you know, or is it just because we are in the field? We sometimes are more sensitive to something. So yeah, they gave us the list of all the things and we looked, and we had the three older kids, and we were like, I don't even understand how that would even work, you know, work out in, uh, we're gonna live. We're both working at the time, you know, we spend time out here in California. So we're like, Well, we both work. And then the kids have sports afterwards. And then like, hours of, you know, therapy in the house, we don't even know, we didn't do early intervention, because we, we had to, for foster care system, when we officially adopted that we opted out of that, because it wasn't working. And it was a lot on him to like the transition of him. And we don't know the trauma because he wasn't speaking. And he still doesn't, but it's there, you know, in your body, when you've experienced things, it's still in your body is not able to express it. And it was hard to take him to the therapy that many times, you know, week, and he would cry, and he would have meltdowns. And I'm pretty patient person. That's what I'm not saying that about myself. That's what people say. But I was even like, this isn't working for you, though. I'm super frustrated, which makes me less patient with him. He's already frustrated, because he's, you know, time to stop, you know, having fun, and maybe some more natural play, which is what we chose to work on here. Like more natural situations than just therapy situations for him. And I was like, this is Mr. He's miserable. I'm miserable. It was far. That's another thing parents we want you to understand that we understand is that therapies are not around the corner, like his ot was one way. And his speech therapy was another way and then you have to fit in because I know you guys all have been on waitlist. And you have to fit in where the appointment times are right. So be like in the middle of California, the traffic out here will be enough to make you want to be like forget it. I want to stay home. Like we look at things we like we want to go out here, but oh, yeah, not that time. Not freeway at that time.
27:31
So it's more than just a therapy time. It's the it's the drive time. It's so what time? Yeah, family time after, like you said like in the evening. So like if you know, for instance, just from our house to Children's Hospital, when we're talking about it's like, in good time, it's 45 minutes, if there's any sort of traffic, not good time of day, we're talking, you know, hour and a half. And so then you know, you're there and then however long the appointment, are they on time it can like that alone can take up your whole your whole afternoon or whatever. And so it's it's balancing that. And that's why I'm really passionate about helping families navigate the school system and bouncing, what therapies can they get there? And what supports can they get there, and then watch which ones fit best for home. But I think for a lot of people experiencing a new diagnosis. There's this, like I was talking about, like this fear of like messing it up. Or if I say no to this, I always kind of felt like if I say, you know, could I hurt her chances, like literally we're working on any sort of communication, sign language, communication device, anything that she could communicate with us. We're working on crawling, walking, bouncing, like big, big skills that you would want your child to be able to have. So I was always so worried like if I if I didn't do this, you know what I feel guilty about not giving her that time and space to go work on that. But like you said there was you know, Craig's always my they, they they nicknamed my school easy breezy Burnett because he's always collected. He's my, you know, opposite you know, definitely here that's the case and so he had to sit me down and be like, you are stressed out. You I was running home programs. So we would go to therapy there right the home programs. I was doing those till bedtime. And I was prepping for the next day. I just got chills remembering like What kind of nonsense I call it nonsense, not like making in the light of it but not sustainable. That's the whole point I'm trying to make of trying to balance doing the HOME program are taking them to therapy, going to school and then not discounting family time fun. And that's what Craig was trying to help me. He's like, I feel like you're, you're missing out on just having fun with her because her schedule is so full of all the things. And so, I mean, he had to work with me to get me to, to, you know, roll roll back a little bit to a more sustainable level because I had our schedules. So I'm always grateful for his his words of wisdom and His I call it his bravery. Because when I I'm can be really stubborn. So if I got my mind set on some I call it he asked me, he's brave enough to say, Okay, babe, I just want you to think I just wonder big word about and then he'll briefly like you, and so forth. pushback at first, but I'm so glad he did, because it wasn't sustainable. And she still has made wonderful progress and done these things. Without me staying up till midnight, doing all the things because I was like, prepping visuals I was, because I want to do anything that I needed to do, because I was running home program and taking care of her. So then when she would go to bed, then I would actually do like, laundry, just anything I needed to do. So it wasn't sustainable.
31:31
Yeah, I totally agree. We looked at it after he turned three, maybe three and a half. And we're like, in Yeah, we were not committed. There's just the we just can't. And I understand I think that because we have the different skill sets, since we were both in I was in early childhood, special education. So I was like, I, I think I got this, we're gonna figure it out, we're gonna work it out. On the baseball field, while we're at practice, doing things just more play based. And just I like that you keep saying family time, you know, that's super important to, to me. And now that you have teenagers too, it really goes I know, people say like, it goes by so fast, though, two year old and a seven year old, like the things that I even did with Taylor, all the things I stressed out about, and you just don't have to have a child with a disability to stress out about what the what's going on, like she was our first and I was like mapping out her school, like she's gonna go to this preschool into this, kindergarten into this, you know, just in now it just, I be like, sure have a popsicle, it's gonna be okay. Because one day you're going to, you know, go off and live your, live your own life, and we're not going to be having these little moments of, and I know, all the parents out there, you know, the little moments that you have, like, maybe just you and a kid, if you have more than one have, like a certain look or a giggle, or all those little things are just as important in in building connection and relationship and neurons, if you you know, get into the brain science of, of learning, new skills, those things are just as important. In my, in my opinion, for sure. Yeah. And
33:36
I think that's the other thing is, and I'm really excited to hear and be around a lot of professionals, at least I didn't hear back then that are really helping parents know, like, you can do this at home. And I for a long time, I really felt like okay, this is what they're doing here because they're the professional and I don't even know if I should try to do that at home because I'm I'm mom and I don't want to mess up like what they're doing. So I really am excited to see and hear on Instagram and all these different therapists saying, This is what you couldn't do at home, and it's better to try like, you're not going to mess up, you know, as far as like, if you're consistently trying and growing with it. You're that's what your kid needs, you know, is that carryover at home and, and learning how to communicate, like you said in real life and real life situations on the go situations. And so I'm really excited about I feel like it's a movement of really helping parents feel confident and capable. Because you already feel insecure enough just becoming a parent and trying to like do all the things. So I really love hearing people really being that voice and encouraging parents like you can do this at home and you can play games this way. And I know I could have I could have used those words of wisdom, you know, back then so you We just wanted to share with you like a little bit about our lives. And what we've gone through that led us here wanting to do a podcast really is about connecting with families and offering that perspective of where we are now versus like being in the trenches of the moment of a new diagnosis and finding your footing and figuring out your way with that. And it does take time, but it will come together. And the fact that any parent out there is making daily efforts to be the best parent. That's what your kid needs. You're, you're making Archer's appointments, you're trying, you're listening, and you're connecting and with your child, that's being a good mom, that's being a parent. That's something that I really want to get across to them that you are enough right now, with what you're doing, and I know there's a lot of pressures and just feeling like, I'm not doing enough, but you are absolutely right. In this moment. You are so
36:04
that's good, Courtney. That is good, good. Good stuff I get I guess I'm gonna stick to it stick to the tips because I get so emotional thinking about it. Joe's Josiah is seven and a half. Because he's like my mom, my birthday is coming.
36:21
And I was counting down eight. So
36:24
let me say of seven and a half. But like he said, like just remembering when, when he was he was two and a half when he came in, he had so many, just so many things, just from fosse from coming from foster care, and then having the different diagnoses. I mean, he's been through a lot of things in his years, seven years. So when we see him, like run, for example. It's just we were like, remember when like he wouldn't even knew he had to use ot piatto T two, he didn't really like recognize that he had like a, like its thumb. And like his voice. So he would just run with one arm like this whole. He was it wasn't that it was immobile. He just like didn't they had to teach him out? Like
37:13
crossing midline for a lot of kids. Use this hand to cross over.
37:19
Yeah. And so that will keep so even feeding himself. Yeah, because we wouldn't use it.
37:27
I don't know, can you see my phone? Because I need to do because I'm a preschool teacher. So I need to show you
37:33
that we need the visual, Courtney.
37:37
Everybody, like his thumb, like he just wouldn't. And they had to, like put together like all the cool things that they do. You know, scooping ice cream, like old pro. And we're like, Wow, all those, like you said all those little things that led up to you know,
37:58
yeah, I'm just kicking that gratitude, really. And recognizing, I think that's helpful to like, okay, he might still have things he's working on. But let's not forget, like he can scoop ice cream, he can run and engage both arms, my daughter can crawl across the floor, she can get on, she can get off the couch with all falling on our head, like, these are things that she has because of therapy and carryover at home that she didn't have before. And so when you can recognize those moments and really give thanks and appreciate that, it just makes them sweeter, when the next kind of breakthrough happens and they gain a new skill or learn you know how to use something that's helpful for them. That just brings you someone short by
38:44
now. So we want you guys to know that we are wanting to know we have these titles in these. What are these letters up under our names and things like that, however, we have been, where you where a lot of you guys are, and that's where our heart is, is to let you know that some days we cry. Some days, we some days, we laugh. And we have been through a lot of the same things and we just want you to feel like you are able to take care of your child in you guys able to have your family culture. You know without no I don't want to take outside influences but that you're making the decisions that you'll be able to make that you're empowered to make the decisions that's best for your family and that might be look different than somebody else's, but that you're able to have the information that you need to make the decisions that's going to help you guys you know
39:51
look confident in it. You know, like you're I think that's the main thing is you are going to have a lot of different professionals or whatever We're giving you input. But at the end of the day, what's most important is the parents take that information back, and are able to say, That's really great information. But here's what we feel is best for our kid in this season at this time, it doesn't mean you're not going to take some of their advice down the road for other things. But just realizing that my husband's always said that each professional is focused on their, you know, like, OTs mostly focused on OT and neurology is giving you information on neurology about what was happening was they weren't looking at, like, I call him all the other subjects. But like, if you give me this assignment and come in every three months, and then this doctors telling me to come in, that leaves me with 13 appointments, you know, I mean, and so having to say, like, Is that necessary? Because I feel like we're pretty stable right? Now. Could we push that out to a year and if anything changes, I'll just give you a call. When I started checking out that sentence, My life changed, because they're like, oh, yeah, I think that's fine. We're good, stable. And so I was, that's one of the ways I decreased my pressure on me of all these things is, because my husband was saying, like, well, she's pretty good here. Like, we're not having consistent issues. So why are we going in every three to six months? Like, could we do a yearly appointment? And so that's how I started talking to the doctors and, and really letting my voice be like, this is a lot on us, like, what can you hear, but I want other parents to know that sooner than later. Like, ask questions and, and really know, like, is this 100% necessary right now, because I also have seven other specialists in my daughter's case, like, that I'm working with and that are giving it, you know, labs and MRIs and scans and stuff. And so I had to help them understand what was on my plate and what was on her plate to have appointment after appointment, you know, so, yeah, I want to I don't want to keep going on because I could talk about forever, but it's so important. That's one of our missions with the IEP live. And the some of the other things we got coming down the pike here is helping families feel supported, and helping them see big picture all the different systems of care and support, and helping them navigate that, while filling in the driver's seat and knowing that they can, they can pass on some of the things.
42:34
One of the things, it's okay and like Courtney, keep keep saying and I love is that it's in the season. So you can always pick it back up. Or you know, even if you feel like you made a mistake, we're all gonna make, let's just put out there, we're gonna make mistakes. You kids are going to talk about you in therapy. One day, one of them it, especially if you have more than one. So one of the kids, one of my four kids is going to be like, there's something I did not like, when she made me those Pinterest pancakes, and I'm going to feel very offended when they do that. But I'm gonna have to say, you know, good, I did not know that you didn't like my Pinterest pancakes, and you know what I will make them for you. anymore, I'll ask you next time, all you can do is make a different decision, right? You can't just wallow in it. Because we're going to make mistakes as parents. Yeah, there are no books, there's tons of books, but there's not a book that's written for about your family and your child. So that means that there's going to be mistakes but as long as you can know that there's other options like I chose the wrong therapist, you can choose you can choose another one I chose the wrong school, you can research and find you know, whatever that
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is adjust you can adjust Yeah, and I think that's empowering to like you know, just knowing that that you can say this isn't working I'm going to evaluate that I'm going to adjust going forward but I like that just saying you can you can say I didn't know that but here's what we're going to do going forward that's valuable to our kids to know to you know that's why I always admit you know, we will have a coaching one for parent then when I went through the parent coaching with you but that so helpful just to learn to say you know, I made a mistake and model that for our kids. I really helps them know that it's safe to make some mistakes which they are going to make mistakes just like we do, we're all human, but modeling that is empowering for kids to know that mom and a mistake and she she made adjustments and now it's better. I can make a mistake I can make adjustments and it will be okay to that's that's something I want my kids to know that's possible. You're sure?
44:51
Well, if you guys are seeing this i Sorry, I've looked a mess with my hoodie on. Getting over it. getting it out there in Courtney has a new mic.
45:03
Yeah, I got a new mic cuz some I listen to my own podcast and I was like our tone are not matching up here sound like I was yelling at our listeners so I'm really excited about my mic. I think it's helping a lot I think that's better. Oh, Courtney's
45:18
all the way right and I now don't have a mic issue but I have a better No. Today, but you know what? That's that's real life.
45:32
She showed up even when, when she wasn't feeling like gorgeous she still showed up and was like, we're gonna get this podcast done for for our listeners this week. No matter what,
45:44
right no matter what. So on that note, guys, we're going to in this podcast and we'll be back with you in two weeks. Yeah. Me too. Weeks. Have a good day.
