Episode 5 - "What did you just say?"

speaker-0: Welcome to Even If the Special Needs Parenting Podcast. I'm Mikayla and Mariah. ⁓

speaker-1: Great. It was okay. It was okay. I'm ready for Lucy I'm ready for Lucy to go back to school. Hopefully Tuesday or you know. And is that

speaker-0: How was your week? When is she starting? Because she has to be cleared by a doctor to go back then?

speaker-1: No, she's already cleared. It's just everything getting situated at school. Yes. Yeah. Gotcha. So I think Tuesday she'll be good to go.

speaker-0: ⁓ gotcha, all the station. ⁓ yeah, I'm sure she's ready to be there with all of her friends. ⁓ yeah.

speaker-1: And I I'm not ready for I'm not ready for her to to get out of the house. She's just so ready to go that I'm ready for her to be able to be up there with every ⁓ no. I I've I've enjoyed my time with her, so Yeah.

speaker-0: You're like, I need you to quit that. ⁓ That's good. Glad she's all recovered and ready to go back to school. That's awesome. So today we're talking about things people say to special needs parents, the crazy things, the shocking things. Some things they think are supposed to be helpful, but they're not. And the things that stay with us much longer, then they probably realize. I've had people say stuff to me like 10 years ago in Dawson's 11 that like I still remember. Yeah. So today we have our first guest. Yay! ⁓ so here is Cheryl King. She is our first guest today, and I will let Cheryl introduce herself a little bit, tell us about her and her life and her family. Hi Cher

speaker-2: Hi Cheryl. Hi, thanks for having me.

speaker-0: I'm so happy you decided to, you know, let me peer pressure you into doing this.

speaker-2: Yeah. Much appreciated.

speaker-0: Yeah.

speaker-2: So I am married to my high school sweetheart. We've been married 25 years. We have three amazing children. ⁓ he is retired military. We've lived all over the country. Our youngest son does have special needs. He was born with Down syndrome. So a little bit of background there. ⁓ navigating school systems and life and advocacy for our all three children, depending on where we are and what that looked like for each one. ⁓ and I just like to be a voice and for what that looks like on the everyday for our family. Yeah.

speaker-0: That's awesome. I have met Tyler and he is amazing. Like I don't think you could ever be around him and not just be smiling.

speaker-2: He definitely brings happy to everybody he's around. Yes.

speaker-0: Yeah, I love that so much. So I actually work with Cheryl. We work at the same school district ⁓ in Special Ed together and she is amazing. I'm so happy that she stayed at our school district another year. and is doing what she does because she is a good advocate for all the kids and all the families. So

speaker-2: Yes, and I guess I should have elaborated a little bit on that. Not only personally, it's a subpassion of mine, but ⁓ professionally as well. I've been working in the special ⁓ special needs community for eighteen years ⁓ as an advocate for our students, for educators, and being able to sit on both sides of the table really helps bridge some of that for our families and for our kids. Yeah. And it's so

speaker-0: So needed for sure. How the

speaker-1: Yeah.

speaker-2: My youngest is nineteen. Okay. Okay. So we we have navigated the school system. We are currently attending the eighteen plus program and that transition to adulthood, which is a whole nother journey that I I had K through twelve down as an educator. I I knew how to navigate this. So this is new territory for us and what that looks like.

speaker-0: So this is the part of our episode where we talk about why we cried this week.

speaker-1: Make it sound like a game show.

speaker-0: It is! Why did you cry this week? Because I feel like so many of us just cry so much. It's funny to kind of laugh about. So Mariah, why didn't you cry this week?

speaker-1: Can I can I talk about Hades Town a little bit?

speaker-0: I mean how how long is a little bit? This is only, you know, a thirty to forty five minutes.

speaker-1: Okay, 'cause I've listened to it like ever since we watched it in the movie theater before Lucy's back surgery. And every time I listen, there's certain songs I listen to and I just get so emotional over it. And it's just so silly that that this musical has done this to me. I know, it's crazy. ⁓ and you're actually gonna be able to stream it this week. The actual like pro recording and everything of it, but it's just ⁓ my gosh, I'm trying to think of how I can do it quickly. Orpheus and Eurydice, you know, fall in love. And at the very beginning, Or Orpheus is singing and and telling Eurydice ⁓ he's gonna give her a a wedding band, he's gonna give her a bed of feathers, and he's gonna give her a banquet table, and he's gonna promise her fair skies above, kind a kind road, and I'm gonna be with you forever. All these things. Okay. Well then, you know, she dies and goes to the underworld because this is all Greek This is all Greek mythology, okay? And and then and then it changes. after he goes to the underworld to get Eurydice back, it changes and he's like, I can't promise you a wedding band and a and a bed of feathers and a banquet table, and I can't promise you fair skies above, and I can't promise you kind roads below. And that is where I lose it every single time, is on that song because I'm just like That is, you know, you fall in love and you're young and you just think everything's gonna be hunky dory and everything's gonna be great and wonderful. And then as time goes on, you realize, no, we don't really have much control over anything. And yeah, every time I get to that one song, I just I just lose it every single time. But why I listen to it, I don't know. No, it's gonna make me emotional. Anyways, that was mine this week.

speaker-0: Cheryl, why did you cry? Did you cry?

speaker-2: Cry know really cry. I really cry. No, I didn't. But I will say I don't know if you guys are into gardening or not, but this has been a rough year for us on our garden and it's very frustrating for me. ⁓ it this started as a passion of ours probably twenty years ago. It kind of started out of necessity having a larger family, you know, and we moved into gardening and canning and all of that. And now it's just kind of a side thing that I do, but it has been a rough year. I feel like it was n there was no gain in my time spent this year. Yeah. Especially that's something Yes. So yeah.

speaker-0: We look forward to.

speaker-1: Has it just been too hot and not enough rain?

speaker-2: I think that's part of it and I'm guy I have to take ownership. Like I'm not a consistent waterer either. So I probably dropped the ball there. But it's still disappointing regardless. So

speaker-0: good to remember that plants need water.

speaker-2: Yes, that is. It is true. But they don't bother they don't bug me for it. So they kinda get, you know, put to the Mac burner.

speaker-0: Yeah, I was driving the other day in the car listening to some don't want to call the older country, but whatever. ⁓ Martina McBride. This one's for the girls. You remember that song? ⁓ yeah. And it was that one part that was like, This is for all you girls about forty two, tossing pennies into the fountain of youth. And then it talks about the laugh lines on your face. And I was my gosh.

speaker-1: I've heard that song in forever. ⁓ my god.

speaker-0: I know. I was it it just hit me. I hadn't heard it in a long time. Probably the last time I listened to it, I was probably in my twenties. Yeah. So I hadn't heard it in forever and it was just one of those days where I was just, you know, emotional and I just lost it. And then I felt stupid afterwards. But dang you, Martina McBride.

speaker-2: All these years later making connections.

speaker-1: I know it.

speaker-0: Why that one specific year in that song? So the one of the main reasons that I was thinking or wanted to ask Cheryl on was because we had decided we wanted to do this segment on did you really just say that? Things people say, whether it they think it's helpful, whether they want it to be hurtful, whatever reason people say what they say to special needs parents, was because I had seen a post that Cheryl put on Facebook after an experience that she had. And I was like, ⁓ that is a sign. Cheryl needs to be our first guest, not just because of of that situation, but also just because she's, you know, an awesome special needs parent. So ⁓ anyway, so I want to start off if you're okay with that. Cause basically the first one, the first question is what is something someone has said that's so shocking that you just, you know, you're so shocked in the moment 'cause you can't believe that they just said that. So If Cheryl, if you were willing to talk about that experience you had, I think that would be awesome.

speaker-2: Yeah, absolutely. it was a typical Saturday. My son and I were running errands out shopping. We were at a store and we had someone kind of block our way. It and this is how it started, blocked our way with their cart in the aisle. And we just walked around and the gentleman was on his phone, or at least pretending to be on his phone. I don't know who he was talking to, and he was talking about some news highlights. And it almost sounded, you know, being a Someone that's worked in the special needs community for a long time, someone that was just really repeating headlines of news articles and stations that they that are current. And so we just walked around and kept on going, no big deal. ⁓ until it escalated a little bit. Two more times we were walking around the store and this gentleman was following us. And at this point, I could I realized he was not actually on his phone speaking to anybody. You could see the screen. there was no phone call. And he proceeded to walk past us and say, all children with Down syndrome need to be killed or should be killed. I can't remember the exact quote ⁓ at this moment. But so I heard him the first time and we kind of dismissed it and walked away and just kept walking. Thankfully my son did not hear him or make a connection of any kind. But this proceeded to happen two more times and it was very intentional with him walking by us and seeking us out. ⁓ And at that point it was just me and my son. So I didn't have another adult with me. So as that mama bear, you know, do you address do you address the other human the other adult or do you protect your child from and keep their peace and keep your own peace at that point? ⁓ so yeah, it it really caught me off guard and I went into the protective mode of my energy needed to be focused on getting him safely out of there and not engaging with this other adult. ⁓ we did reach out and seek security to get us through our experience at the store. and they were amazing. They were look, now my reason to cry today, Michaela, now you're making the tears bubble up. I'm sorry. So this is it, I take back what I said earlier. This is it, having to retalk about this incident. So ⁓ yeah, it they helped us and they insisted that we stay. We finished our shopping ⁓ experience and they walked us to the car and made sure we got there safely and Everything ended up well, but just to know that somebody could walk by another human and just make these comments or these accusations based on the way they look, the way they appear. ⁓ because if you met my son, that would never be your first thought. So yeah, very ⁓ c caught me off guard for sure.

speaker-0: So I I really want to know, and just just because I know you in real life, that if Tyler wasn't with you or if there was someone else able to remove him from the situation, what what would you have said to him?

speaker-2: I don't know what I would have said. ⁓ because like I said, at first I really thought there was something else happening with the other individual that was making these comments, whether he was special needs or was having, you know, a mental health concern or whatever, but being someone that's worked with the mental health community, knowing that society's not gonna change for you, so it's learning to adapt. So I might have approached it with inqu inquiry of, you know, why are you saying these things? I think engaging and having a conversation would have been knowing where they were coming from if it was just repeating something that they had heard or if it was truly a belief or something they're be you know being influenced to believe or say. ⁓ I don't think it would have started as defensive or hatred. I think it would really been inquiry of, you know, why are you saying these things? And then that response would have led my next my next response after that.

speaker-1: Yes, yeah.

speaker-0: You're like, I don't know because I don't know what his answer would have been. I don't even know what I would have done in that situation if someone would have said something like that, you know, in front of Dawson just because also Dawson doesn't understand. So that I might have let him have it. I don't know. I think it depends me on I think it depends on the day you catch me.

speaker-2: Yeah. Yeah. Exactly. And I think my younger self would have immediately done that. Yeah. My younger self would have immediately went on the attack. But being nineteen years into this, I've just learned that some people aren't worth that space. Yeah. because it would have bothered me more and then he would have got the response he wanted. Yeah. You know what I mean? Yeah.

speaker-0: And then it it's hard to know what they expect from it. Do they expect you to just cower and walk away? Do they expect you to get defensive so then they can become the victim because you turn into the bad guy? It's like what do they honestly want to happen in those moments? Or do they even think about that? You know what I mean?

speaker-2: Yeah. And at the end, I guess I didn't close up the situation. So as we were checking out, he was a couple lanes down from us checking out and intentionally walked past us and started waving at us. So it was very intentional. So my whole perspective had changed at that point, that it was no longer ⁓ someone else, you know, of special needs or needing some assistance. It was truly intentional. ⁓ so that kind of changed the the perspective at that point.

speaker-0: Yeah. Sound like he was definitely wanting to get a reaction from you.

speaker-2: Mm. Yeah, sure. He he was, definitely. Wow.

speaker-0: Goodness gracious. So, yes, that that is one of the reasons why I was like, Cheryl would be amazing to come on this episode, just because when I read your post when you commented about it on social media, I was like, She handled that with such grace, and just you were so eloquent in the way that you described your situation, how you're wanting to, you know, educate people about these things. That's I think you're amazing in the way that you handled that, because that could have definitely gone so many ways. Yeah.

speaker-2: Well, and truthfully it wasn't even me that handled it well. I think it's bec knowing my son and him knowing that if I was upset, he would have followed my lead and he would have got protective of me as him now being an adult, he gets very protective and knowing that that could have ended badly, him feeding off of me. So he has taught me to keep it in check. ⁓ 'Cause the old me or the the young me, like I said, that would not have been my response. So he's taught me how to handle those s situations.

speaker-0: Awesome. So I want to read a few. ⁓ so we put a post on on our Facebook page and we had a lot of people respond to the things that people have said, and some of them were just shocking to read. It's such a wide range of just comments and things that people say to us. ⁓ Mariah's was about Lucy's. ⁓ she got asked by someone if after she had her spinal fusion surgery, if Lucy would be able to walk. Like when you didn't tell me that and I like when I read it I was like

speaker-1: And I'm pretty sure my face when they asked me was probably ridiculous because I cannot hide my expressions. It's like she's not gonna be able to walk.

speaker-0: Like we would have done this a long time ago if that's all it took. ⁓ that's great. ⁓ my goodness. Yeah, the one that I put down was when Dawson was a little younger, I had dropped him and Zach off at Academy. This is when we still lived in Lovick. And I had to go run an errand. So when I came back to go into the store to find him and finish shopping, I parked in handicap. Because when we came out, obviously we would have to load him up in handicap in his wheelchair. And I got out, obviously looks like an able-bodied person getting out walking into the store. And this lady and a guy she was with walking behind me and as loud as possible, this lady said, Well, must be nice to be able to park in handicap. And at that time, see, I I'm the I'm the flipped version of you, Cheryl. The Michaela of the then and the Michaela of the now would have handled that very differently, but then I ignored it. Now if I was by myself and someone said something that to me, I would have addressed it. But I was still, you know, navigating life with him. I was like, just ignore it and keep going. But now, no, I definitely would have turned around and said something. Because I mean, it's just what a ridiculous thing to say. What came out of my mouth would have been something, you know, probably not very nice. So it was a good thing in that moment I kept my mouth shut. So ⁓ let me see some of these. Zach doesn't like it. My husband doesn't like it when he's with Dawson in public and strangers come up to them and want to like touch Dawson. And then two Dawson say, You're my hero. He's like, Why? What is you what has he done that makes him your hero? So he he hates when people come up just out of the blue and call Dawson their hero. ⁓ let me see. What's another one? ⁓ you didn't pray hard enough or God will heal him one day. Yeah. we had several people comment that that they're not praying hard enough for their child to to get better or you know, to be healed from their diagnosis. Just spank it out of ⁓ There was several of those. I remember when Deacon was little one time and we lived in a small town, he was having a meltdown. Well, he had a lot more meltdowns when he was younger than he has now being eighteen. And we were in a restaurant and he was having a meltdown. Who knows what it was over at the time. And one of us was taking him out and on the way out this just old man was just going off about how we need a whoop his butt and and that would solve the problem of having meltdowns.

speaker-2: I had a very similar situation to that ⁓ at an aquarium with they had lights going and stuff and sensory overload. And I just need to spank him. I was like 'cause that will help this situation right now.

speaker-0: Yep, that won't put him into even further sensory overload.

speaker-2: Yeah, grieve.

speaker-0: I have several friends that adopted their kids with special needs. And apparently, if you adopt a child with special needs, you're not allowed to be frustrated or upset as a parent because you quote unquote knew what you were getting into when you adopted that child.

speaker-2: ⁓ wow.

speaker-0: I I see that as a common theme across the board with wow, these awesome parents that adopt their kiddos.

speaker-2: 'Cause 'cause parents in general just never are frustrated or upset. No. Just any parent.

speaker-0: And I'm like, Well, most parents chose to get pregnant and have their kids, so they're not allowed to complain either.

speaker-1: Exactly.

speaker-2: Yeah.

speaker-0: the board we just can't graphic complain there is ⁓ do y'all feel like that there are things people just say as a generalized term that they think is helpful but it really isn't

speaker-1: You knew the risk of having kids.

speaker-2: I I you know the state the saying that you know, that God knew that they needed you. You're so strong or or you know, those kind of comments. I know it's meant with good intention, but at the end of the day, like he's still my son. I'm just his mom, you know, this was not You mean like seeing myself better than anybody else as a parent.

speaker-0: The God doesn't give sp or he gives special needs kids to special needs parents. I wanna turn around and say, Well does that mean God doesn't make your special, Linda? You know, like what why are you saying that

speaker-2: Yeah, yeah.

speaker-1: I know we have had many, many people pray over Lucy, like they're gonna touch her and pray and she's just gonna get up and walk. You know, you don't have enough faith or whatever type thing. That's mm, I'm just like, no, I'm I'm I I feel like I'm pretty good. I feel like if Jesus wanted her to walk, he could make her walk if he wanted her to. Like I don't have any doubt in my mind about that, but

speaker-0: Not as helpful as I feel like the intention. And I know a lot of the people that say stuff are well intended intentioned. What's the right terminology? What they say and I just I think they just don't really realize what they're saying and how it sounds. Yeah.

speaker-1: Good intention. We did have somebody very, very, very early on after Lucy's diagnosis that messaged us on I think it was a Facebook page that I had made that was like Cure SMA for Lucy May. Basically said that those things can come about from vaccinations. Don't really think that my kid is missing a gene because of vaccinations. ⁓ pretty sure I'm a parent after a carrier for.

speaker-0: Really?

speaker-1: Pretty sure we're both carriers and that's where it came from. Byron was not happy about that. So he gave the response on that message. ⁓ but it's just like you're trying to be helpful. Helpful. I'm sorry.

speaker-2: So we had an incident when Tyler was little trying to find a a new pediatrician. We had moved, my husband being in the service a lot, we we moved a lot. And ⁓ he I was just going for a general pr you know, checkup, whatever month checkup it was, and this pediatrician actually said to me, ⁓ you know, it's the mom's fault that the child has Down syndrome. And I was like, That's I've already done all the genetic counseling, all the you know, all that. I'm not here for that. Like this is just a checkup for him. Like I just need you to check my child over. And it was very bizarre situation. ⁓ needless to say, we didn't end up going back to that doctor. ⁓ it was just his approach and the way he kinda handled it. I was like, What? Wow.

speaker-0: And then how do you turn around and educate a person in the medical field who thinks that they're right and what they're saying?

speaker-2: And if there's research on that, then so be it. But that's not how we approached it at all. You know, it was just a very cold statement. And all I could think was, what if someone didn't have the background knowledge that I had going into this appointment? And what would that have done to their path with their child?

speaker-0: Yeah. Blame their self their whole life for whatever they

speaker-2: Don't have enough of that guilt that they carry on the regular. Yeah.

speaker-0: So I think one of the main things is like how how do we know how to navigate the assumption behind the words? You know what I mean? Like as a whole, like all of us as parents, like whenever because this is obviously something we all as a collective community, because especially based on all the responses that we got on social media, that everyone hears on a regular basis. Right. I don't think any of us have navigated this life without some sort of comments from somebody one way or another. do y'all think that there's comments that are easier to brush off, like from strangers? ⁓ or do y'all think it's easier to brush them off from like friends and family, like people you know? I think

speaker-1: strangers are easier to brush off than like people that you know for sure. 'Cause you would think people that you have relationships with and stuff would know I guess know better than what to say. People that you don't know and are just random strangers, I don't I don't have very high expectations.

speaker-0: Yeah.

speaker-2: Agree. I think strangers' comments are easier to brush off. At this point, I think when he was when my son was younger, I I think I tried to educate everyone that had something to say, but I've I've moved past that. Some some people don't want to be educated. Yeah.

speaker-0: Have y'all had a comment? I I know we talked about your comment, Cheryl. Have y'all had one that has like stayed with you longer than others? Are they all kind of the same generalized ones that we've talked about?

speaker-1: I know we used to get more people when Lucy was younger that would that would say stuff or comment or ask, you know, like what why is she in a wheelchair and different things because I mean when you see a two-year-old in a wheelchair ⁓ that especially you know, since she's she's communicative and and all these different things and ⁓ but as she's got older it's it's ⁓ usually more people walking up and being like, ⁓ look at those wheels and you're like Okay. I bet you can go fast in that, can't you? That's usually what people say. Yeah, she can go I guess she can go kind of fast. I don't know.

speaker-0: She can go fast over your foot.

speaker-1: Yeah, sh that's ⁓ that's my thing that people do a lot of time. I'm like, why don't you comment on her, like her shoes or her outfit, or just her smile you know what I mean? Like her. It's usually like her wheelchair. ⁓ it looks like your wheelchair could go fast, or ⁓ your lights light up. That's really cool, which that is cool, but ⁓ you know, it's things like that that people just say and you're just like, ⁓ okay.

speaker-0: ⁓ all right, bye.

speaker-1: But her response to people is better whenever it's, ⁓ I really like your shoes, those are really cute. What thank you instead of, ⁓ your wheels are really cool.

speaker-0: Do you have one that stayed with you longest, Cheryl?

speaker-2: think it's ⁓ it's ever been one specific comment, it more of situations and just learning from that individually. Like Tyler going into kindergarten, he did not do a pre-K program because of where we lived. We were very remote ⁓ and we did in a private pre-K setting versus going into the gen, you know, the school setting. ⁓ so when he went into kindergarten they had to do his evaluation We had his IEP meeting and they immediately wanted to put him in life skills and self-contained classrooms based on a diagnosis versus even knowing the child and so those kind of situations that are just predetermined on a diagnosis over who he is as a as a child.

speaker-0: Yeah. Yeah. The most the thing that I feel like I've gotten the most, because Dawson was one of those kids that was in a wheelchair early on, is just what's wrong with them? We'll just wheel by people and just the third I mean, that's just what they blurt out. What's wrong with ⁓ Well nothing's wrong with them. What's wrong with you? Like I it's just like, come on, what what do you think the end result is that if that is gonna be? You know, and then then I have Deacon who's like, He has sex And then he just like blurted out when Dawson was little. And I'm like, okay, yep, he's what he said. Right.

speaker-1: Can you not ask that a little kinder, maybe? I don't know. I know.

speaker-0: You know, another one that bothers me a lot, I think, probably more than even what's wrong with them is when kids ask that to their parents, because kids are naturally curious. They just don't know. They see a kid their age in a wheelchair, they don't understand. And the parents first thing that they want to say is, ⁓ God made him that way. That probably makes me more mad. Than the kid coming up and ask. I'd rather the kid come up and ask me and I can just tell them all about ⁓ You know what I mean? As opposed to the parents using that as a cop out to have a hard conversation with their kid. Yeah. But then I'm like, this kid's gonna grow up thinking God picks and chooses who he wants to, you know, who he wants to have disabilities. Yeah. So that is probably one of the ones that I have heard a lot over Dawson's eleven years of life that probably frustrates me more. than any of ⁓ I'd rather deal with the what's wrong with ⁓ over the passive comments of parents trying to placate children who are generally curious and, you know, it's a good learning experience for them.

speaker-2: Or when the parents tell ⁓ sh you know, they hush ⁓ and they tell ⁓ d don't ask and try to act like it didn't happen. I'd rather ⁓ just let the kids ask questions. And yeah.

speaker-1: Well educate.

speaker-0: No, I have called some parents back or some kids back when their parents have shish ⁓ And I'm like, ⁓ no, you can come and say hi. Like he likes it when kids come and talk to him. And you know, of course the parents are kinda like, ⁓ okay. It kind of catches them off guard 'cause I think they just don't expect us to want people to come and talk to our our child because why would we not want people to come and talk to our kid? Like they're a regular kid.

speaker-1: Or sometimes they don't say anything and they just stare. And you're just like, Man, you can take a picture. It might I think I think airports are one place that I have found that people will stare the most is at a airport. And I don't know why that just sticks with me, 'cause I guess 'cause we had to go up to the Denver airport so many times and just either be pushing Lucy around or she's in a power chair, you know, whatever it is. And you're just like

speaker-0: I was gonna ask, do you take the power chair to the wheelchairs to the ⁓ not the wheelchairs to the airport or her manual?

speaker-1: You know, when we flew regularly, I don't think we did when we flew to Disney World, we we took her power chair, but

speaker-0: So I think all of us as a collective whole, just one of the main questions to think about is like, how are we supposed to act or handle these situations? Because they're obviously never gonna stop or go away for any of us. So like how are we supposed to handle it? Are we supposed to educate them? Are we supposed to correct them? Are we supposed to, you know, sometimes get angry and tell ⁓ off? Because let's be honest, sometimes we want to do that. Or, you know, are we supposed to just walk walk away? ⁓ I feel like as a whole, a lot of us are worried that like it's like danged if we do, danged if we don't. You know what I mean? Like if we say something, we automatically turn into the bad guys and we're the ones turning irray, even though they say this horrible thing about our kid, or if we walk away, then we're just accepting that these people think this way about our kid, and that's a way of just accepting it without correction. It's like how how are we supposed to do it? Like what do y'all think? I mean, do y'all feel like there's one way we're supposed to all magically supposed to know how to handle these situations? Other parents don't have these situations come up. Like we are in this weird part of life to where we navigate things other people don't, and there's no manual on knowing how to navigate it.

speaker-2: I think all answers are correct. I it just depends on the situation. I Yeah. Yeah. It really is. There's certain days that I won't engage at all, for the safety of my child or my sanity or but then other days I will make sure that it's known my where I stand and what needs to happen. So I really think all of the above

speaker-1: That's what I was thinking. Yeah.

speaker-0: It ⁓ always based on a situation if Tyler's present or not or if it's depending on the day and your mood.

speaker-2: ⁓ no, it really depends on the situation, I think. Like is it really a point of advocating for him or educating somebody or safety because somebody just is not Yeah in the right space. ⁓ 'cause if it's advocating for him in a safe space that needs to happen, then I have zero problem making that known.

speaker-1: Yeah.

speaker-0: I'm so bad about later after the situation is gone and moved on. I'm like, dang it, I should have said this. I should've said that and then like I have a whole conversation with myself later in the car about what I wish I would have said because it would have been so powerful and amazing. But yeah, you know, the moment was lost and me

speaker-1: does me too. I cannot I am not good thinking on my feet in those situations.

speaker-0: Sometimes I think yeah. I think our husbands are definitely our two husbands are definitely better in those moments than than I am.

speaker-1: I do think a case by case basis because some things are just like, ⁓ just let that let it go, let it go off your back, whatever. But then other things you're like, no, I'm addressing this right now and we're gonna talk about this.

speaker-2: The one area though that I I n I guess I never thought about ⁓ is navigating into this adulthood, right? So ⁓ there's a lot of decisions to be made when they hit eighteen, whether and this you could do a whole nother conversation about this, but yeah, you know, supported decision making or taking guardianship of your child and what that looks like. And but we had an incident where we had the emergency room with with our with Tyler and just learning that these amazing professionals. I don't want their job. I couldn't do their job. But the way they interacted with him made me really take a step back and realize this protective bubb bubble that we've kept him in and advocated for him in, it doesn't apply outside of our community. Right. So this emergency room with these doctors that were talking to him on a level that I barely understood, let alone him, ⁓ just I'm it's very eye-opening on I wish in that moment I had ad not just advocated for him, but used that opportunity to teach them like, hey, you need to slow down and talk to him on his level, not Yeah. Yeah. Like he's just another patient coming in the door.

speaker-1: Well they they need to do better about that for anyone because I'm I feel like I'm somewhat intelligent and I have no clue what you're saying, you know? Like you need to dumb it down more than they do. Cause I'm like, I get it, you're smart, you know what you're talking about, but Yeah.

speaker-2: Like

speaker-0: Yeah, you don't have to prove to us that you're smart.

speaker-2: And slow down because I can't process the questions you're asking me as fast as you know what you're looking for. Yeah.

speaker-0: Yeah. Well, I'm horrible about being able to like really keep up and advocate and know what I'm talking about when it comes to Dawson. And I'm very like with it. But then the second I'm the one who's the patient, it's like I turn into this bumbling idiot that doesn't know anything anymore. And I'm like, why is why am I like that? Because I c act I mean I am with it when I go to the doctor with Dawson, but when it's me, they probably think I know nothing about anything. What is your

speaker-1: birthday. ⁓ like, well I c I know I know Lucy and Lincoln's like that. Well, I mean I know Ellie's too, but you have to say I have to say it like every week. Somebody's calling me and let me verify let me verify their, you know, birth date and whatever. And then yours, you're like, ⁓ what is my birthday? ⁓

speaker-0: ⁓ I've given them Deacon's birthday before, but that's because his birthday is one day before mine. Yeah. And I'm like, Nope, that's not right. And they look at me like, Yeah.

speaker-1: Nope. No, nope, that's that's a kid, not mine. Yeah, this is the same with Ellie's being the day after mine. Yep.

speaker-0: So is there something, you know, y'all been in this world a while, you know, Cheryl, you at nineteen years and Mariah at thirteen. Is there anything that you would tell like parents just starting their journey? Obviously we know we've been in it a while that these parents are gonna be getting things said to ⁓ It's just, you know, part of it. Is there anything that y'all would tell them, any advice or anything to help them learn how to navigate these These moments when they come up.

speaker-2: It this is a hard question because you don't wanna give your opinion about things, but you wanna give them a thumbs up. Like walk your journey with your kid, but just know that it's your journey and your kid is individual, you know? My story isn't gonna look the same as another parent with a child with Down syndrome, you know? It's right. But reach out and utilize resources and supports. I don't think people realize how important having a community of people that can relate to you in some level it really is. ⁓ Tyler's part of a special needs baseball team. And it's not even about resources that I I'm looking to gain from them or they're looking to gain from me, but truly just having somebody that gets your kid when he's passed out in the middle of the field or he's, you know, cutting up and saying things that really are inappropriate that he shouldn't be saying.

speaker-0: That's a good answer. It is definitely important to find your your people that can relate in the field in the through the journey. And that's one thing that, you know, I hope people can get from this podcast and, you know, the community we're trying to make on social media is because it's not related to just one area of special needs, you know, like the Down syndrome community or the cerebral policy community or the SMA community, but like as a collective, us as parents, we're all living and learning a lot of the same shared experiences. And it is very important to have those community connections for sure. I don't know if I'm gonna answer that question because to follow up after that it's just gonna sound, you know, horrible.

speaker-1: Some of it to me is always like you as a person. Cause like me and Byron are completely different people. And so he he responds and thinks completely different than I do in those situations. Because I really can just let it go and and you know, I might talk about it later. It might it might be like, I can't believe somebody said that or I can't believe that. But then I'm just like, What you know, whatever. ⁓ I mean, I hate it, but sometimes you're just like people are just idiots sometimes. And that's just the only explanation that you have for it. And ⁓ unless, you know, it is done. Cause most it my interactions with most people is not done, Cheryl, like your situation where I mean, that was just completely hateful. ⁓ I've never had an experience like that. To me, if it was a situation where it was like a completely hateful thing to say and do, like it would definitely be hard to not wanna put ⁓ in their place or say something. But most of the time things are done out of a ⁓ out of a out of a good heart and it's just more of they just don't really know how to talk and how to respond in in those situations.

speaker-0: Think a lot of the times it's important to really, like you said, to tell to find the line between if it's coming from a place and they honestly think what they're saying is going to make us feel better about ourselves or make us feel like we're doing a good job as parents, as opposed to Cheryl's situation where I mean the amount of hate that has to be in someone's heart to say that to another human being on the planet in general. To me, I think that's where I tow the line on. I I let things go when I know that it's more or less the intent is somewhat good as opposed to that where no, in this situation I am going to say something because it they can't live their whole life thinking these things about specific groups of people. Yeah.

speaker-2: I I was gonna say it's just a good thing that sisters weren't there because they're much more protective on the no tolerance side than mom might be in a situation.

speaker-0: They would have jumped them. There was some things that I had jotted down in these moments that I look that I liked. And I liked that, you know, the way that they come across for parents to think about is not every comment deserves your energy. You know, you we can't constantly just be giving back to people all the time with every single comment or every single thing people say under their breath. Because it's true. I mean, we have enough to worry about with all those comments taking up so much of our energy. Also, you don't owe everyone your your child's medical history, which I agree. Like they they are not privy to all the things, you know, that we go through with our kids on a regular basis. Sometimes protecting your peace is the best response. Yeah. And I agree. Because sometimes when you get into it with someone in those moments, like it just your peace is just ruined for the day. And it's just, you know, it's just gone.

speaker-2: Yeah. And I think for me that's built up over the years. It wasn't that way in the beginning. I felt I needed to educate everyone i in the beginning. But over the years you learn it's just not.

speaker-0: Yeah. And then you can handle the same comment differently on different days. And I agree with that. Like I some days I am so chill and I'm like, let's talk about why that's wrong. And there's other days where I just want to lay it into them, just depending on, you know, how stressful of a day it's been. So it's interesting how just one day from another our response can change drastically. Is there anything that y'all wish in those moments? Especially on like those small comments, you know, like, we don't know how you would do it. God gives special needs kids to special parents. Is there anything that y'all wish people would say, like on the flip side of it? Things that you feel like would be more helpful to just people in the community as a whole?

speaker-2: the response that we'd give or what you wish they would say to you in

speaker-0: But what can someone say when they genuinely want to support a special needs parent? What is something that you wish that they would say on the flip side? That would actually be helpful for parents to hear.

speaker-1: I know like just where we live in a small town, the there's so many people that know us and know our situation. And we've lived here for eleven and a half years. And I know when when Byron or I do get texts from friends or from people, even even some that we may not know that well, that are just encouraging. I know, you know, y'all doing a good job. I know it's not always easy, or you know, I know like I see you and I I and I and I see How much you are involved in the church and in the community and all these different things, but then yet you still have your situation with with your kids and stuff and you're doing a great job. If you ever need anything, let us know. You know, stuff like that is just like that's encouraging. And those are good things that I want to hear just as a mom and and ⁓ and just where we live that are just more meaningful than even not saying anything at all.

speaker-2: Yeah, I would agree. More supportive and then also being intentional with asking like, you know, what can I do to help? Or like if Tyler's gotten older and has friends group, it's like they want to involve him, but they don't know how. So I wish they would just ask those questions. Like, yeah, hey, if we wanted to go to the movies, could he come if you came with him? Or, you know, those kind of things instead of just excluding him because they were afraid to ask those questions.

speaker-0: mind just ⁓ you know tell me about your child because a parent is going to tell you all the amazing perfect wonderful things about their child and all the negative things that the assumptions that people make when they see them for the first time and then that will change their perspective of what they know about kids living with these diagnoses. Yeah that's well next week we will be moving forward with another topic and we will be letting y'all know on social media what that topic will be and we look forward to

speaker-1: That's good point.

speaker-0: Communicating with you all again soon.

speaker-1: Even if the world doesn't always understand our children, we will never stop making sure they are seen, valued, and loved. We'll see you next time.