Raising Disabled
We're Deonna and Rhandyl and this is Raising Disabled where we openly talk about parenting our disabled kids and the challenges and triumphs that we've experienced along the way.
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Raising Disabled
Avoiding Glass Child Syndrome with Deanna Dawson, LPC
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In this episode of Raising Disabled, we are talking about how to avoid "glass child syndrome" with Deanna Dawson LPC.
Deanna is co-owner of The Springs Therapy in Lubbock, Texas and is a parent of her disabled daughter Joy. You can learn more about her family in our episode Deanna Raising Joy.
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[00:00:00]
Rhandyl: Hey, y'all. Welcome back to raising Disabled. So today's topic, we're talking about Glass Child Syndrome, and today we have Deanna Dawson with us. She is a licensed professional counselor that primarily works with children. She's also a mother to a disabled child, and she's also been on the podcast with us back in episode 19. It's called Deanna Raising Joy, and if you haven't listened to her story, please do.
Deanna, we thank you so much for joining us for today's topic Glass Child Syndrome. I mean, and more specifically, we're wanting to talk about possibly ways to avoid Glass Child Syndrome, things like that. And so I think most of our listeners, especially if you're caregivers to a typical kiddo and a disabled kid, you're very familiar with this.
But for those that aren't we can kind of start with what Glass Child Syndrome is in a, like a clinical diagnosis type situation. So- do you wanna kind of tell us, Deanna, like what your clinical thoughts are on this diagnosis, and do you have much experience with this? [00:01:00] Obviously you do in your own home, but when you're treating kids in your profession.
Deanna Dawson: Yeah. So glass child syndrome, is really just a way of saying and giving almost like just a label, 'cause it's not a clinical diagnosis. There's nothing in the DSM about it. But it's really just a way for us to describe our siblings of our disabled kiddos that they call it glass child 'cause they're sometimes see-through. And so, that's kind of what it means is, , they get pushed aside a lot. They get kinda like secondhand attention and, you know, all those things- Yeah from us, understandably so.
But trying to figure out ways to combat that from happening is what you really, like really wanna do. Not that is an easy task at all. Yeah. For sure. Yeah. But it's not a real clinical diagnosis. It's just, something that someone has coined, and it- makes a lot of sense.
Rhandyl: Yeah. And we all come from different places, but similar places in this, [00:02:00] like with our kids' age differences- ... whether our typical kids are older or younger than our disabled kids, and , I'm really curious about this because my son is pretty young. He's four going on five soon, and I think the thing about this is just being aware. Like anyone that's just aware of what that is, and that it's a thing, and I think the more awareness that caregivers have, then hopefully the better we can do at trying to avoid them feeling this way. But yeah, I'm excited to kinda get into it just for my own learning. You guys , are a little more seasoned with the older kid situation. So I know you see a lot of kiddos and siblings and how common do you think these feelings are?
Deanna Dawson: I do, I feel like they're just very common, and I think they're very, common to all families, no matter what age your kiddos are, in the whole lifespan of raising your kids., If they're older than your disabled kid or younger. I have [00:03:00] both, so- Yeah ... 'cause our disabled kid's in the middle, and so I have both of those things. And , I think it's very common. I work mostly with the kids in clinic with the kids that are disabled, and so a lot of times I don't get to see their siblings. So a lot of times my colleagues will see their siblings and do therapy with them because of some of these feelings, and helping the parents understand, "Okay, here are some things you can do. This is what your kid is feeling," and maybe doesn't wanna say it because they feel guilty saying it out loud, and- Yeah having these big feelings, because they also love their siblings so much that- ... they feel really bad just even having thoughts like that. Having the thoughts.
Yeah. My eight-year-old one day, our daughter Joy, has been having a terrible time lately And my eight-year-old throwing a fit one time, he afterward he said, "Mom, sometimes I just wish she wasn't part of our family." And I said, "I know. It's really hard. It's not easy, and all of us have thoughts like that a [00:04:00] lot, you know?" Like- ... why is this part of our story? Why is this- Yeah ... you know, X, Y, Z? And just for him, I felt really encouraged because I was like, okay, he's comfortable expressing- Mm-hmm that emotion without feeling like he was gonna get in trouble. And for me- Yeah ... to say, "That was a horrible thing to say. Why would you ever say that?" Yeah. "She's your sister. You should love her." You know, all the things because all of us have burnout times when we're like, "What are we doing?" Yeah. "This is the worst. Why is this my life?" You know?
And, our kids have those feelings too, and we need to recognize that and realize that they're not immune to, basically the caregiver burnout that we get and, all of those things because they're living and breathing the same things that we are a lot of the time. Wow. So- Yeah ... so I think that's one major thing is just to make sure that your kids know that all feelings are acceptable and that maybe we don't say them in front of our other sibling if we don't have to. Yeah. [00:05:00] But- Yeah ... okay, these are- Only say that to mom. These... Yeah, these are good words and don't tell, you know, don't tell her that, but like- Yeah. Let's talk about why you're feeling that way and what we can do to make it better at home, you know wow.
Deonna: Well, what me and Rhandyl have talked about this, the whole birth order thing, like my daughter got disabled and, you know, my son had this normal experience, and all of a sudden it drastically changed, which he did your trauma therapy program.
But, you know, it was crazy because, you know, if you look at my son, some of the things, and we'll get into this more, but it's totally different behaviors than what Rhandyl has said about her son. She said her son likes to stick very close to her and stuff like that, which mine does too. He's way more Velcro to me maybe than like other kids his age, you know?
He's real into his mom and dad, whereas other kids his age I feel like are starting to pull [00:06:00] away. He's not doing that, but he resents sometimes the massive workload that he gets put under, which we're gonna talk about. But yeah, I mean, the birth order really does, I think, play a big part in how that glass child- thing is gonna manifest itself. Or that's what we've noticed.
Deanna Dawson: Yeah, I agree. And I think for Cole it was a little different too because he also had trauma on top of that- ... from her. Yeah. I mean, like from her situation, you know? And so like- Yeah ... a lot of our younger kids, like they haven't experienced... They've grown up with it, and they don't know any different, you know? And so- That's what my- ... you know, the older ones- ... my son is. Yeah ... yeah, like when Cole had to endure all the trauma and all of her coding and all of those things- ... Mm-hmm ...
you know, him, for me clinically it makes a little more sense that he would be a little more Velcro to y'all. Yeah. Because he's seen what can happen and what scary things happen, and then that she's, , in [00:07:00] and out so quickly and, you know, I mean, you just never know. Yeah. And so I think- Yeah ... that probably is holding him back a little bit more.
But Rhandyl's son has... That's all he's ever known- Right ... 'cause he was born into it. So I've seen, I mean, I can see the difference between my two boys, 'cause one of 'em's now almost 15, and one of 'em's eight, and one of 'em was there when Joy came. And so he's always been her protector. He's been, you know, like he's endured all of her life, ? And then my younger one has grown up and surpassed her developmentally, but she's always been there, mm-hmm. So it's it's totally different for him. Yeah.
Rhandyl: Yeah. I remember when we were pregnant with my son my husband bringing up the point of "Yeah, it's not gonna take very long before he surpasses her." He had a lot of feelings around, like, how that was going to be. And I think my husband w- wants to instill the protector, , [00:08:00] caregiver role in him. But he's so young and we don't push that on him. But then I feel guilty about that being an expectation for him to have to carry, from such a young age.
Deanna Dawson: But you can also normalize that- Right ... because , his gender has a lot- Sure ... to do with it, too, just naturally. Because we always, you know, no matter if your boys are the youngest or the oldest, if you have boys and girls, the boys, the... We're always encouraging the boys to protect their sister. You know, like- Yeah ... in the joking- ... of the dating and all of- Sure ... those things. You know, "My brother's gonna protect me, so you better watch out." You know? Yeah. Those kinds of things.
Will , my 15-year-old, had that experience this year at school where someone was using the word retarded. And he flew off the handle. It was a coach, and he was- Oh my gosh. Oh, he was lit up. Wow. And my- Yeah ... I mean, my kid's pretty chill, but this coach- He's "Shame on you." This coach was saying something, and he was not having it. And he went into protective mode, and he just was like, he was all done. Oh, yeah. So- Wow. You know, it's really, I mean-
Deonna: The sibling doesn't even [00:09:00] have to be there.
Deanna Dawson: I know, the sibling wasn't, it wasn't e- they weren't even talking about her. It's irrelevant. You know? Yeah. It's "Okay, well, there you go." I am offended. Yeah. Wow. Yeah.
Rhandyl: Yeah, and I feel like as my son's gotten older, I think about the times where Remi's needs obviously have to come before his. I mean, they're usually obviously medical needs, and he wants me to come... Oh, like for example, , Remi needs to be suctioned or something, or there's a slight emergency going on and he's "Mom, come look at my puzzle," you know? And then I'm like, , "Hold on." You know? Just that's just daily life. Yeah. And then, but I just also, there's always that mom guilt or that fear that he's going to think about all those moments where her needs came before him. Whether his needs weren't act- at the time, he thought they were s- such big needs. But they're not. You know, and I'm the adult okay. But it's hard.
Deonna: I bet I say, "Just a sec," or, "Hold on a sec," or something like that hundreds and hundreds of times a [00:10:00] day because, you know, it's like a battle for my attention between both of them. Yeah. And even though my son understands 'cause he's older, it's...
Yeah, I mean, it's, it doesn't matter. He still is wanting me, they're pulling me in separate directions constantly. And I mean, it's crazy. I feel like I have to say that all the time. One of them is constantly waiting for me to do something th- with them, while the other one is getting the attention. It's crazy.
Rhandyl: And that's hard for, that's hard on you too. I mean- Yeah ... I was thinking about this before recording and we kinda touched on this in the episode with Deanna a few years ago, but h- and in my head, I came up with Dionne and, Deonna and I are, like, fortunate enough, or Remi and Allie are fortunate enough, but it's really not fortunate. Their medical needs and their complexities put them in a place where they can have private duty nurses , and support that we get. , Whereas- ... Mm-hmm ... deanna's daughter, Joy, she's in this middle ground where She [00:11:00] has all these needs, but they're not medical enough for, say, the state to say that- She is approved for nurses, and so- Which is crazy
you know, a lot of... Yeah, and so kind of the point I'm getting at with that is you know, , my son doesn't know a household where- ... it's just us four. , There's always a another caregiver around, and it's funny. It's like he just started realizing over the last year that these people are actual staff for sister. But they've always been so good about you know, trying to incorporate him into her routine and things. But he, it's like he just is realizing that, oh, they're not just here to just be here. They're a part of the family to him and to us, of course,
but like he made a comment the other day. We had a nurse leave early, and it was just us four, and Barrett started running around the house asking where so-and-so was. And I was like, "Oh, they're gone. There's... It's just us." And he was like, "But who's gonna take care of sister?" And I was like- ... mom and dad and [00:12:00] you." And he was like, "Me too?" You know. Aw. He got excited about that. And I was like- ... oh, my gosh that is- That's funny It just made me think I don't know, this topic has been on my mind just 'cause we were planning to talk about it, but all these little things- ... I'm like- ... oh, wow.
Deonna: Well, and it's funny too because they're also vying for the attention. Even my son, who's 14 years old, you know, if we're in the room, Macy or Tanya or whoever is doing something with Allie, and my son will still be like, "Macy, Tanya." He still- Yep ... wants all of those people's attention even though they're technically not there for him. The lines are so blurred between- they're almost like his aunts or something. Yeah. And so not only does he want all of our attention as well, like normal levels, but he wants their attention on equal playing fields too. Yeah. Which is like a whole nother thing. Okay,
Rhandyl: it's good to know that your 13-year-old is, or 14-year-old now- feels the same way, 'cause that's how, yeah. It's funny, we have a couple of young college girls that are, they come in after school or [00:13:00] in the afternoon sometimes for respite. And Barrett, when he gets home from school, he immediately thinks they're there to play with him. Aww. And gets all these things, and it's just cute. I mean, they- Which would help you. It does. It does. But it's also they're like, "Sorry, you know, we have to, we're, giving sister a bath or doing trach care," or something, you know? But they do, thankfully he gets his little one-on-one time at the end of the day before they leave. But it's just- That's sweet it's just, so different.
But so I'm curious, Deanna, what misconceptions parents may often have about how well siblings are coping. I think you kinda touched on it, , the fact that your little boy said that to you, like- ... the, I mean, but I feel like there's a lot of probably kids that wouldn't feel as comfortable saying that because- Right of the reaction that the parents may have to that. Oh, yeah.
Deanna Dawson: And my older, my oldest daughter, she's turning 18 this week, but , she would never have said that, you know? Like- Yeah ... and she's like, perfectionist. She's an oldest kid. She's an oldest kid. Yep. She does all the right things. I mean- Everything's [00:14:00] in, you know, and "It's okay. Don't worry about me." Never asks for help. Does not ever really, ever put her needs above anybody else's, period. And then, one thing is noticing if your kid is unusually- self-sufficient. Now my youngest, we have four, so my youngest is definitely self-sufficient, but I think personality-wise and just being the fourth kid, no matter if we had a disabled kid or not- Right. We're "Yeah, go- Maybe ... go take care of everything, man. Let's go. You're- Yeah ... the fourth one. Do whatever you want, you know?" Yeah. And so he's way more self-sufficient than our kids, but I don't attribute that to having to be self-sufficient, you know?
So, knowing the difference between okay, is this a coping mechanism for them, or is this just who they are and how they're, gonna be anyway no matter- Right ... what, you know? So, my oldest was gonna be more anxious generally, but she- Mm-hmm ...... also lived through 20 foster kids that- ... we had in and out that also were all medically needy, you know?
So, it's like she's been doing this for 10 years. I [00:15:00] mean, she was five when we got Joy, so this has been her whole life, you know? So, it's just kinda interesting to watch, too, 'cause you're like, "They don't know any different," and you're like, "What would their lives have been like if it- or what would their personality have been like if we didn't have this?" , But I think just making- Yeah ... sure that they're still kids and that they're not becoming adults in your house.
And , I think one of the bigger red flags is probably when you start noticing your typical kids worrying about your emotional state and caregiving for you. That's also a huge red flag just because if they're feeling responsible for your family's safety or for your family's emotional well- wellbeing, that's too much for them, you know? Yeah. You need to take a step back and be like, "Okay," "are you doing this 'cause you love your sibling and this is who you are and this is your nature and this is what you wanna do and you're gonna grow up to be a really, you know, helpful person and you would be like that anyway? Or are you trying to make sure that everything is going [00:16:00] exactly- ... because it's giving you anxiety when it doesn't because you feel- ... like you're in charge?" Oh. So I think, as long as- You can see them being a kid instead of being another adult in your house. I think that makes a big difference.
Rhandyl: Yeah. Yeah, that's really good advice.
Deonna: I, I agree with that, 'cause I... There's things obviously that me and your kids, and a lot of our friends' kids, when I see them, they are on a different level of maturity- Oh, yeah ... that is adult-like, but they still like to do kid things. I think that's a good... You know, my son, even though he is way different than everyone his age in a lot of ways he still likes to do kid stuff, you know? But yeah I think that is a good red flag to be looking out for. Sure.
Deanna Dawson: Well, and it's fun to see our kids interact with other disabled kids too. Mm-hmm. Mm-hmm. ''Cause it's really- Yeah ... they they're not scared, and, like- No, no ... they're like, "Oh, here, let me plug your O2 monitor back in. It's [00:17:00] totally fine," you know? Yeah. Yeah. And it's like- Oh my God ... and and how well our kids get along, too. You know, when we're with our friends that have disabled kids- ... their maturity levels are the same, you know? Because they are all living the same life, and it's- Yeah ... totally different than their friends' lives. So I think it makes them better human beings, obviously, later on.
Yeah. Even though we tease that we're like, "Man, we are giving y'all a lot of content for your therapist when you get older." Oh, for sure. Oh. Yeah. Like- They'll be able ... I mean, you're gonna... you need to start saving for that now. 'Cause you're really gonna have a lot of words to say- Oh ... once you leave here and realize that this is not normal. This is not what normal houses are like.
Deonna: Even if you did a great job and did everything right- ... the kids still might need therapy over- Oh, 100% what they've seen and been through. And, I mean- yeah. Yeah. 100%, oh my goodness.
Deanna Dawson: Totally agree. So we'll start saving up for their counseling- Yeah ... when they're older. And their husband or wife is like, "What is wrong with you, man?" Like... Yeah.
Deonna: They just [00:18:00] need to marry other people whose, had siblings that were disabled.
Yeah. Okay, so we're talking now kind of about things we can do. So how can we give meaningful attention to all of our kids when one kid requires so much time? And we got some comments about this. Tracy Emerton said, "Trying to still do stuff with both kids independently as much as possible," like any kid that has two plus kids. But, Yeah ... you know, the independently part, I'm assuming has a big part to play in that. But what do you guys do at your house for trying to have meaningful attention?
Deanna Dawson: We have four kids, and- Yeah ... we, you know, doing foster care for so long, we, at one point I had six kids under seven. So, and two of them had feeding tubes. You know, so you're like- ... well, there's none of that going on during that time. Yeah. You know? But, doing foster care, we could get [00:19:00] respite for our foster kiddos, b- and then- Right take , our big kids, to go do other stuff or whatever. That happened rarely, but those times, we did cherish that time.
This year we got to take our three kids on a little trip just for the weekend, and Joy got to stay here with grandparents and she also stayed with some babysitters and stuff, and they even had to call us twice while we were gone, and, you know, Joy is screaming, "What can we do?" You know? I'm like, "I can't help you. I don't know." "Can you take care of it?" Yeah, I'm not there. And so, and it was fine, but it's just like even when you do get away, your attention- You're still ... still gets- Mm-hmm ...... taken away- Yeah ... from your kids, you know, even if you're in a different town.
But we, we for sure do all of the activities that our kids are in. You know, so- ... I mean, Will has played basketball. He , travels, and does all the things for high school basketball, and we are at every game. We're not gonna miss it. It doesn't matter if we have to hire someone to come in [00:20:00] and watch Joy or, if we have to take her with us. We take her with us- Mm-hmm because That's just one thing that's just not an option for our family. We just- ... we're gonna sacrifice and make it work. And she, yells for him on the sideline when he's not even in the game, you know? She's cheering for him. And so- Aww ... you know. And so it's worth it , to do that, and to have, you know, it's good for their friends to be exposed to those kinds of things, too, but- yeah, that's one of our major things, is, - we just don't miss stuff for them.
Yeah. Yeah, no ... and then at night, , she goes to bed early, so we'll have movie night without her because she's asleep early, and she's blind anyway. Mm-hmm. She can't enjoy movie night as well. Yeah. And so- That's not her thing ... you know, we try to do things like that. , And if they wanna go to the trampoline park, we go to the trampoline park and, do what we can with her. But we try to do as many things they want to do and be present for them when we can, whether if Joy's with us, great. If she's not, great. Yeah. But just making that a priority.
Deonna: Yeah, we try to do that too. I take [00:21:00] Allie to every single thing he does. And it's not easy, and it takes a lot of thought, a lot of planning, a lot of- ... going and driving and seeing if we're gonna be able to get into the place or, you know, whatever it is. But I think it's so good for him to know she's showing up for him, and not just us, like her too. And there's some stuff she can't do if it's like raining or something like that, but I've... I mean, yeah, we're the same way. If he's doing something, we try to get her there- ... or figure it out, because I don't want him to just look back and be like, "Well, I went to everything of my sister's, and she never came to anything of mine." Yeah. So yeah, she's out there sweat- or well, she doesn't sweat 'cause she has a paralysis, but- ... you know, whatever it is that she does out in the 100-degree track meet weather, she's out there.
Rhandyl: Well, that's a good point to... You know, I hadn't really thought of that perspective because my son, who's not in any little leagues yet, but he's just now starting to show interest, like [00:22:00] this Challenger League season he's with sister like walking the bases with her gait trainer. He came up to me multiple times this season like, "Mom, I wanna run on the line." And so- ... after each game, the last couple of games after the field's cleared, I let him hit the ball off the tee and let him run around the bases after the game. And then he got to run from third to home with, or walk beside sister because he was definitely, like seeking my attention through that because Remi this year, she wants me to be the only one. She's like refusing to walk for anyone but me- ... these last especially the last few games and with her gait trainer. And so he's just sh- starting to show me these things.
But there's so many things that, you know... I felt guilty from the time Barrett was l- born because I could just take him in the car and go anywhere with him, and I've never been able to just take Remi in the car by myself, ever. It's just not... she's... Right now especially, she's constantly [00:23:00] decannulating, like multiple times a day. Yeah, it's just not a good idea. She's doing it to herself. Yeah. It's just not safe.
And so, but with our son, we'll try to take him to 50 Street Caboose or Chuck E.
Cheese, do little things like that. And then he goes to his own school, and he has his friends, and we'll try to set up play dates .. and then the same thing for Remi though, We'll try to just take her by herself b- bowling um, or like even one day I was at work, but her PT and the nurse, they took her to the bowling alley for a PT session. Like those are things we can do now that I feel like, is safe enough, even though it was hard for me to say yes. And I couldn't be there to be like the helicopter parent.
But , y'all brought up the whole game situation, like I know Barrett's gonna be getting busy with his own things and, I know, it would be easier to just have Remi stay home with her caregivers if we have- ... if, you know, if we have them that day. But just hearing that... Because yeah, he is at every game to watch sister, or he is at, you know, her [00:24:00] activities, and I should probably definitely take that into consideration that it may not be every time, but that she be present for him as well. So-
Deonna: Well, and as they get older, it'll be harder. I mean, like next year with Cole, he's gonna be going to track meets in other towns. Like- Oh, yeah. Traveling ... she might go to some of that, you know, but at least you have to try, I mean- Yeah ... as much as you can. But yeah, it... As they get older, some of that gets much harder.
. So, you know, we know that the kid that is not disabled is gonna have bad feelings sometimes. That's just part of this. And so how can we tell the difference between just normal sibling frustrations, and then deep emotional hurt, resentment, hatred, like that kind of vibe towards the disabled sibling?
Deanna Dawson: And, you know, so much of this can be also in just a typical family that- Ugh, yeah ... you know, we forget about that. Like we, you know- The golden [00:25:00] child ... every family has- Yeah ... all this jealousy and like- Yeah ... you know, the favorite kid, and these- Yeah ... little kids that just think they're being left out all the time, you know, all the things. Very true. And so, just- Those middle children. I know. Yeah.
And so just remembering that okay, some of this is normal. You're gonna have this no matter what. But I think some of the big things are, like just making sure they're not bringing , they stop bringing up their own needs ever. You know- ... you always wanna make sure. That's kind of like a deeper emotional, like I'm just shoving down that I need anything because I never get what I need.
You know, we talked about being a little adult, , those kinds of things. Perfectionism is also one to watch out for. I know. Full crowd. And I have kids that are, like already perfectionists anyway, but,
Deonna: As Cole's organizing his baseball- My, I know, my- ... cards in alphabetical order.
Rhandyl: Yeah. My son, everybody's like, "Oh my gosh, he's so OCD," and now that you say that, I'm like, "Oh, no." Yeah. No.
Deanna Dawson: And that's the thing too, like- No, that's true, though ... there's also just regular anxiety coping, and there's also- Yeah ... wanting to control things that- ... they can't control, [00:26:00] you know- Mm-hmm ...... stuff like that. But-
Deonna: I've seen that a lot at our house, yeah.
Deanna Dawson: Yeah. And we've talked about that before. Just, that's a- Mm-hmm ...... trauma coping mechanism too, and I think watching also for, When kids feel like they only get noticed when they are achieving something. So that's kind of the only time they feel like they get to be the important part of the family is when they're achieving. And so then they tend to want to achieve at everything so they will get more- Yeah attention from us. So really just also making sure your attention is consistent and not just "Oh yeah, okay, you did great at this." Good job, yeah. You're good as, yeah.
And then emotional withdrawal is always gonna be another one, which is typical for a lot of kids, especially as teenagers. But any times they're keeping their feelings private if they're detaching a lot, if they're going to their room and not wanting to be part of the family, like excessively or any kind of verbal comments about, "Nobody cares about what I do anyway," or, you know- Mm-hmm ... "... "Y'all don't care if I'm here or not."
You know, things like that, those are a little bit [00:27:00] deeper that are becoming maybe some of their core values that we need to watch out for. Any kind of- Well, and yeah, I believe all that, for sure. Yeah. I mean, it's, and it's hard in, in our lives right now. Anything, everything's hard anyway, but- any kind of increased anxiety or anger outbursts that are not typical for that kiddo, Having trouble at school, maybe starting to act out at school, if- ... they're trying to get attention in other ways, or, you know, if they know they get in trouble at school, they're gonna call Mom and she's gonna come get you. You know- ... some things like that, like trying to get attention in negative ways.
Not sleeping is always a huge red flag when your kiddos are just either so worried about things that they're not sleeping or trying to stay up really late to hang out with parents things like that. And any time they feel like they're a burden "Well, I'm not gonna ask my mom if I can go be with my friends because, X, Y, Z." My kids do that a lot. It's hard or, yeah. Yeah. My kids do that a lot. It's "Well, we didn't think you would wanna get Joy in the car to [00:28:00] go take us," you know, whatever. No. And I'm like- I've had that ... I'm like, "I don't wanna get Joy in the car to take you, but I'm going to anyway," you know? Yeah. And so,
and I think, just having a good community around you is gonna help that because all our sweet friends, they know the Dawsons cannot leave their house after 6:30 PM because Joy has been asleep already, you know? And so we will give your kid a ride, , because we know that it's hard if Aaron's out of town- Yeah ... or whatever, you know. And so it makes me laugh 'cause I'm like, "Oh, they're so sweet to cope with all of our abilities." That is sweet. Yeah.
Deonna: Well, that's what... there's times like that with us where I'm like, "I want my son to be able to go do this thing. I physically can't get him there," and I'm like, "We- I will help you figure out a way to get there. We'll have someone come get you or whatever." Yeah. 'Cause he's not a driver yet and that's okay. I mean, like- ... it's nice when you have people who are willing to make sure- Yeah ... your kid isn't a glass child. They help you.
Deanna Dawson: Yeah. [00:29:00] It's really nice. And then watching out for, , statements about their worth "My problems aren't important," or, "Mom and Dad already have enough to deal with," you know, and those are things they may tell other people, like their teachers or- ... you know, other grandparents or something like that, or, "I shouldn't complain, Mom and Dad have a lot," you know, or, "I shouldn't complain 'cause my problems aren't as big as the problems- that Joy has," or, "My sibling needs you more than I do," you know. Those kinds of things. So just- Yeah ... watching out for statements like that to just know that it's a deeper issue and not just typical childhood jealousy or anxiety and being jealous of your siblings and stuff like that.
Rhandyl: Yeah. My son, he's just... It... I think it's probably just age appropriate. He started recently, like... And it's really only whenever I get onto him, which is all of the time. Not gonna lie. He's a four-year-old boy. That's what happens. Yeah, exactly. Yeah. But just then he started saying, "Mom, you don't love me. You don't love me anymore." And then he, like- ... laughs about it 'cause he knows that, I think he knows that it bothers me. And I'm [00:30:00] like... And so, but I don't- He doesn't know what he's doing to you I don't personally think it has- No ... any anything to do with maybe his lack of attention. Oh. It's more of just him trying to... But I'm like, "Oh, where did you get this?" It's driving me nuts that's his new thing, and I'm like- Yep ... "Please stop."
Deanna Dawson: Therapeutically, that is developmentally appropriate. Oh my God. It will put your mind at ease. Like- Yeah.
Rhandyl: Yeah. Yeah. Those are great things that you pointed out, like, all the red flags to, you know, watch out for. But for people that are listening that maybe they're seeing these things- ... what are your recommendations? Obviously counseling. Yeah.
Deanna Dawson: You know- ... I love to recommend counseling- Counseling ... 'cause it's just so helpful. It really is. And something-
Rhandyl: Or maybe you can do at home, but just to try to-
Deanna Dawson: Yeah I think being really purposeful in what questions you're asking your kiddo, and also creating an environment that your kids are comfortable , answering the questions. 'Cause you can ask the questions all day long, but- are they gonna be truthful with you? Right. Maybe not. You know, if they don't feel safe enough to express their true feelings, they're not gonna [00:31:00] say them anyway. And so that's kind of where you tend to have to go to counseling more if your kiddo is still trying to protect your feelings about it- instead of being free to... 'Cause they'll tell someone else, they just won't tell you 'cause they don't wanna make you feel bad. ...
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Deanna Dawson: and so I just came up with a few questions just to if there's something you feel like your kid needs to let you know about or that they're having a certain feeling that you can ask them. Just, when do you wish things were different? What's something about our family that you wish could be a little bit different? Or what's the hardest part about having a sibling with a disability? Or do you feel like you get enough attention from us? And what do you wish we understood about what you deal with every day? And then if you could change one thing about our family, what would it be?
Which my poor little eight-year-old was like, "Eh I'd, I'd rather not- I told you ... have that sibling." I told you I did not. Yeah. Yeah ... so kids reveal a lot more when parents , invite both positive and negative feelings, and also when parents express positive and negative feelings it's okay for you- It even better flies ... to say, yeah, it's okay for you to say, "Yeah, I hate it when Joy screams," or, "I hate it when Joy hits her head, 'cause it [00:33:00] makes me feel really scared that she's gonna get hurt." Yeah. Or, "It makes me feel really sad that we can't go over to so-and-so's house because, , Joy's tired at night." Or, Mm-hmm ...... and expressing your feelings- Yeah ... is a huge thing for kiddos, 'cause they're like, "Oh, you feel that way, too, and now it's safe for me to be able to say those things out loud." And,, talking to them about, "Okay, this is a good way to say this- ... and this is a hateful way to say this." Oh, yeah. It's okay for you to express emotions. We don't wanna say you wanna kill your sister. We would like for you- Yeah ... to express that in a nice way. To help say that. Yeah.
Rhandyl: Well, those questions, though, man I can see a lot of caregivers being hesitant to ask a lot of those questions because they don't wanna hear the answers. 100%. And so it's you have to be, like, mentally prepared and in a place where- ... you are ready to accept whatever they say and not be negatively reactive. I mean, I feel like if you're at the place where you feel like you can ask your kids those questions, then you're in a good place. But just [00:34:00] talking to other caregivers that we've talked to and even just friends that are in similar situations man I think you have to just be open, Mm ...... to the answers that your kids are gonna give you. And like you said, though, they're not gonna answer you truthfully or answer you at all if they don't feel comfortable with it.
Deanna Dawson: And that goes for anything. It doesn't have to be- Sure ... just with your, about your disabled kid. Right. You know, if your kid doesn't feel like he gets safe responses from you about anything, they're not gonna ask you. You know, they're not gonna ask you- ... what something means that they saw online, or they're not gonna ask you what you think about vaping, or what you think about this or that- or, you know, or so-and-so touched me, or anything like that. ... As a parent, our job is to make it where our kids feel comfortable talking to us about anything that- ... is coming up for them, and they're not gonna get in trouble, and they're not gonna get scolded or lectured or whatever.
And a lot of kids I'm terrible about this 'cause I'm a therapist and my whole job is to fix things. And so my kids are like, "Mom, I just wanted to tell you that. I didn't want [00:35:00] you to fix everything." Aw. And I'm like, "I know, but that's- That's hard ... my whole job in life. Come on, I have to fix things." And so, having kids be like, "Let's just talk about how we feel. We don't have to talk about how to fix it right now. Let's just talk about how this feels for you and what this experience is like for you," I think those- Yeah ... are all good things to check in on.
Deonna: Yeah. I constantly tell both of them, but really mainly Cole. I just am like, "There's nothing that you can tell me that would make me not love you, nothing ever in your entire life.
I don't care what happens, what the future holds, nothing." And and he's told me at times, you know, "It's hard how my sister gets attention," not just from... He's not really upset, I don't think, all the time about the attention he gets, how we don't give him enough attention, but she just, she gets a lot of attention.
He's like, ""Everyone knows her name, but nobody knows mine." And I mean, it is true. And we've [00:36:00] experienced this. Yeah. And they'll be like, "Are you Allie's brother?" And he's
Deanna Dawson: like, ""
Deonna: Okay, yeah, I have a name. Cool." But- So, I... That's where we've experienced the most resentment with him, is other people just being so obsessed with her and being like- Yeah
"Oh, you're such a good brother." And I'm like, okay, but he's also- something else. He's other things. He's not just- He's himself. And people put a lot of pressure on him to be this perfect brother all the time. He's not. Just like- ... she can be a terrible sister sometimes. Like- Yeah
you know what I mean? It's, but he gets a lot of pressure put on him to be- ... this amazing brother all the time by the public, and it, I'm like, yeah, that's just not reality. You're gonna give her a hard time or, I mean, he drives her crazy half the time, but- yeah. That's- I agree ... a tough one.
Okay. So, I am so guilty of this, I'm not even sure if I wanna hear this answer, but- ... how much caregiving [00:37:00] responsibility is appropriate to place on the siblings? We have a comment from Samantha Raw, who is a glass child.
I guess her sibling is disabled, and she said she now parents a child with disabilities, and she said, "Seeing each child as an individual child and not another set of hands to help." And I was like- ... oh, that one hurt me really bad. I was like, I'm gonna ignore that one.
Deanna Dawson: Just keep scrolling. Yeah that's a really hard question to me because it just is so circumstantial, too. Like- when Joy's... I'm changing her diaper and she's kicking me, I'm definitely gonna ask you to run get the wipies for me real quick. Yeah. You know, like, , but at the same time one thing we are very intentional about doing is when my oldest babysits for us, which we would have her do whether we had a disabled kid or not, but we pay her to babysit our kids. Mm-hmm. You know, just like we would any other [00:38:00] kid coming in. Or, ... she had a senior out this year, and so she's like, ""Mom, I can go pick up the kids from school after I'm done, 'cause I get out earlier than them this time, so you don't have to hire someone to do it." And we said, "Well, if you want to do that, that's great. If you want us to pay you to do that like we were paying the person to pick her up last year, you know, you can do that." Mm-hmm. ""But only if you want to. You don't have- Yeah ... to do that. But if you would rather do that and make some money doing that, that's fine, but we're never gonna force you to do that, you know?"
So, our kids generally want to help, and I make sure that I'm like, "Please tell me if you don't want to do this. You have a voice." Yeah. "And just because I'm asking you if you'll help me do something real quick, you can just say I don't want to right now. I'm in the middle of my favorite TV show,' or whatever, " and so just making sure I am respecting their boundaries, as kids and not treating them as another caregiver, which is also, granted, [00:39:00] they would probably, if they were sitting here, they'd be like, "Mom, you ask us to do stuff all the time, and if we didn't, you'd be like, 'No, you're gonna go do it anyway.'"
Deonna: Yeah. Well, there's, it's like the, like when I think about my day,
Deanna Dawson: like
Deonna: if we're getting in the car, it's just a given. Cole s- locks and hooks one side of her chair down in the car. I'm doing the other side. We don't have to have these discussions. It's just part of your daily routine. This is just- Right.
... What we're doing. Yep. And we also pay him, like at night, I don't like doing the dishes. I'm usually doing stuff with her or talking to her nurses or whatever, but we pay him to do these types of chores around our house. He does it, but I remember last year we were at camp, and he was a camper last year with Allie, and I just thought, "I can't ask him to help me too much."
Yeah. This is his childhood. This is his experience. I'm not gonna make him help me. And I nearly killed myself, ... and was just in so much pain I could hardly move for
Deanna Dawson: like
Deonna: [00:40:00] two weeks-
Deanna Dawson: Mm ......
Deonna: afterwards. But it was like, okay, he can't help me with this. But yeah, it's just so hard. We used him so much as a helper, and now he's lifting her and doing all these other things.
But he for some reason thinks that's fun and likes it. I don't know. Okay. But I'm sure- And, yeah ... he'll get sick of it eventually, but- Yeah. Well- I don't know, this one is tough. It is. He's definitely doing more work in the home than another kid his age. Like- Yeah ... I can tell you that, for sure.
Deanna Dawson: Yeah. And Will, every night I piggyback Joy to bed, because that's the only way I can pick her up now. She's 111 pounds and is 5'3", and you know, I'm 5'4", and so her feet are almost dragging the ground. But I can't just deadlift her- No ... anymore. And so I piggyback her to bed. And so my 15-year-old sees me doing that all the time. He's like, ""Mom, you know I could help you do that, right?" And i'm like, "Yeah, I know you can, and when I can't do it anymore, maybe you can do it." "But like right now, while I [00:41:00] can do it you just keep being a kid, and I'm not gonna make you piggyback her." I'm not even sure he could pick her up at this point, but- ... he like notices things. Yeah. And I'm hoping that will carry over into just regular life when he sees his wife doing something that he could be doing. Or, you know- Yes ... some things like that, that I really think can be a good character trait later if I don't make him resentful of helping all the time,
Rhandyl: Man, you guys are in a total... Like y'all are talking about a... I am in a totally different world. Yeah. I'm sitting here man, I can't wait till Barrett's big enough- Yeah. Big enough to help me. I won't feel guilty about it at all. No, and I'm like n- yeah. But it is nice that, you know, like you said, go get the wipes. Mm-hmm. He's like, he's old enough now that I can ask him to go get me things- ... or, run and go, , grab this, or, if we don't have someone with Remi, then I can... if I have to go, , change out the laundry, you know, anything, and I can just be like, "Hey, , come get me if sissy's poking her eye out- Yeah. ... Or p- pulling her trach," and [00:42:00] things like that.
And my husband and I were just recently talking about how he's getting a lot more self-sufficient. It's so nice for us as parents, you know? Mm-hmm. Like, 'Cause he's an early riser, and on the weekends when we're trying to sleep in he'll now just you know, quietly come in our bedroom and ask if he can watch TV, and We're like, "Oh my gosh, you know, he can finally- ... work the remote and the TV."
Yeah. And we're not having to... It's been nice, but then- I also feel like, hearing you guys say those things about what to probably avoid with his just him taking on too big of a caregiver role too young. But honestly, though, it's like he doesn't know any different. So it's probably going to be so natural for him to just to jump right in and do things. But as long as we're aware that he needs to be a kid, then-
Deanna Dawson: Well, and you naturally... Y'all haven't experienced this yet. Yeah. But if you had another baby now- yeah ... and you have a baby, you would tell Barrett, "Hey- Yeah, exactly will you go get this?" You know? Exactly, yeah. And that's totally normal, you know, and any parent does that. Yeah. [00:43:00] So, there's a certain degree of you're part of our family, and we all help each other. You know, when you want a glass of milk, we go get it for you. Right. You know, we all help each other. It's just being part of a family. Yeah. And you're gonna do it for your family, and your kids are gonna do it for you. You know, it's- ... , it's a good life lesson anyway.
Deonna: Yeah, that is true. There's... This is kind of a little off topic, but it was funny because we do this a lot with Cole.
Cole will say "That's not fair that Allie got to go miss the morning of school and go eat snooze," or, "That's not fair that Allie got to..." And he says these things to me, and our response is, "Oh, do you wanna be like her? Because you know, there's things that have happened to her that aren't fair."
And my son's "Oh, you know, actually it's fine that I was at school instead." And we're like, "Yeah, okay." Yeah. But it cracks me up. 100%, that's funny.
So. What do you think you should do if you notice your child or your children that are not disabled constantly sacrificing their [00:44:00] needs for their disabled - siblings? What do you think parents should do?
Deanna Dawson: I think it's kinda, what we had talked about earlier. Just asking those questions and making sure that you have, as a parent, have put boundaries in place, giving them the option, would you like to help with this activity, or would you not like to help with this? Or do you want to have her go to your game? Or, , whatever it might be. Yeah. Yeah. Because... we've talked about embarrassment of other siblings before and- ... you know, that's like a natural thing that's gonna happen, and kids have to deal with that. So, giving them a choice in it, , is a really big deal, and giving them control over their situation I think could be really- eye-opening for them too to be like, "Oh, Mom sees that I may not want that to be this certain way." Yeah. Or whatever. Because it's just hard all around for everybody. And so I think just alleviating any of that pressure for them to help all the time without getting their needs met, [00:45:00] you know- ... , I think that will make them feel seen and- Yeah ... and understood.
Deonna: That, that is good to ask. I've asked Cole before, "Hey, does it embarrass you when we come to some of your things?" Because everyone looks at Allie. I mean- yeah ... it's such a huge attention thing. We were at a graduation a few weeks ago, and I mean, you could just feel the eyeballs on you- Yeah
from everywhere. And I've asked Cole "D- does that bother you when she comes to your games or track meets?" Things like that, and he's
Deanna Dawson: like, ""
Deonna: Oh, no, I don't care." And I'm like, "Okay. Well, I'm just making sure." You know, it's I don't know. I... It's not like he's embarrassed of her, but I just think about that sometimes 'cause- And also just answering questions all his friends are like, "What's your sister's deal?"
Deanna Dawson: Yeah. You know? I know. Yeah, no joke. Yeah. Yeah. And I mean, they may not just wanna answer those questions all the time or- Yeah ... you know, if they're tired of it. Who knows? Yeah.
Rhandyl: So I'm curious what your thoughts are on- what possibly kids that ha- experienced glass child [00:46:00] syndrome as children, what you would expect them to have experiences in adulthood.
Deanna Dawson: I literally have no answer for that question. Okay. Isn't that crazy? Have no- Well, it is like- I mean, and I don't see adults either, so I have no idea. Yeah.
Deonna: I don't know what that's going to be like, but- Not really ... it is funny because sometimes we'll talk about what we think Cole will be like when he's a dad or a husband. And we're like, he's either gonna be the most OCD clean freak psycho ever or he's gonna go the other direction and be, like, a hoarder because we were so- ... you know, careful about everything with Allie. But I do think it could make them... if it's like they're being, feeling neglected, I think it could-
Deanna Dawson: Mm-hmm
Deonna: be really bad in adulthood. I think they could have difficult relationships. I think it could be hard, but- yeah ... I think if you do it right they can be these amazing, hardworking, [00:47:00] very selfless individuals because I'm already seeing that when they're young. But yeah, I mean, I do think it could have seriously bad - long-lasting effects if they're taught by their parents they're not worthy of attention or love or, you know, these types of things. but yeah, I could see it having pretty tough like- Yeah ... consequences, you know?
Deanna Dawson: Yeah. I can too. I just have no personal experience with that just because- Me neither. Yeah ... I mean, , I don't have grown kids yet either. I'm about to experience... I'm afraid with my oldest going off to college now, she's gonna be like, "I'm never going back home ever again- ... because this peaceful life I'm living- ... two hours away from them is like- Aw ... a dream, you know? No one's screaming at me all day to come play with me, or no one's- Well, that's- ... you know, whatever ...
Deonna: that's part we were like, someday when Cole goes to college, we want him to leave our town and go. Go somewhere else- ... to cut the ties of [00:48:00] that. And we're not saying he'll never be her caregiver in the future if something was to happen to us or something. Mm-hmm. We don't know that. But yeah if he stays in Lubbock, I think it's actually gonna bother me and my husband because we want him to go. Go- Yeah ... release that responsibility and go have fun and do the normal- Yeah ... college things. Independent. You know? Yeah.
Deanna Dawson: Yeah. We're looking forward to that for her 'cause she just- Yes she... , we've been fostering since she was five, so she- ... has never known any other life except for lots of kids and lots of- ... caregiving and yeah, so we're excited for her.
Deonna: The silence- But... Yeah. Yeah. ... is gonna be loud.
Deanna Dawson: It will be- Yeah ... very loud. ... Just her nervous system coming down from- just the constant- Yeah ... stress. Oh, my gosh. I mean, I can't i- It's like when you go on vacation, if anyone ever... I don't get to do that. I don't know. Yeah. We're about to go. Like other people do it. Other people do that, but it takes days for your nervous system to calm down, and it doesn't- Mm-hmm even fully calm down because there's always the chance that- ... someone could [00:49:00] call you, you know? It's not- Yeah ... even like a real- That's- We're about to go for- I don't call on vacations ... like 10 days. I call on trips. No.
Rhandyl: Where y'all going?
Deanna Dawson: We're taking Emmy and Will on a cruise for her graduation present. Oh, okay. And so- That's cool ... we've never done that before, and- It's big ... it's huge, and we're terrified. I mean, 'cause Joy- I know ... has just been doing terrible, and we're like- You're stuck on a cruise ship ... should we? I know. We can't come back. Should we really be doing this? Is this- It'll be okay a good idea? We've been planning it since October. Yeah. We got all our caregiving lined up, you know? Yes. But- Do it ... it's should we do this? Okay.
Rhandyl: I know. That's how we felt when we went on- don't call us ... our anniversary trip last year- ... was we were so far away, there was no- hopping in a car. Yeah. Yeah.
Deanna Dawson: We've never been this far away from-
Rhandyl: That was our first too, the dominican. It was crazy. Mm-hmm.
Deonna: But that's part of what we're talking about. You know- Yeah. Oh, yeah ... sometimes you have to just do it and be like, "Okay, I've done everything I could do. I've been responsible. I've made the plans. And just go for it." Yeah. Yeah. Even though-
Deanna Dawson: There's like- ... it's [00:50:00] really scary ... glass parent. Yeah. You know? This is- Yeah ... totally new for us too. Yeah. Oh, we- Yeah ... have never- Yeah ... had one of our needs met ever. Glass spouse. Yeah. Glass everybody. Oh, yeah. Yeah.
Rhandyl: So how can parents nurture empathy without expecting self-sacrifice? If that makes sense.
Deanna Dawson: Yeah, it really does. I love that question just because empathy is just such a big skill that- ... we are really getting worse and worse at as a society, actually. Mm-hmm. Um, Just overall. But- Yeah ... I think my kids have way more empathy than their peers just overall about anything. Everything, yeah. Yeah, about everything and all people. And you know, we really try... Which having a pastor for a dad and a therapist for a mom- ... we kind of have- Yeah, it's different ... a nurturing home just naturally 'cause of who our personalities are.
But we want them to be empathetic, and we want them also to help other people that are not [00:51:00] just our kids., We want you to- Mm-hmm ...... be self-sacrificing because that's what we want you to do, but we don't want you to feel resentment toward us- Mm-hmm ...... for doing that. But we still want you to love and care for your siblings and everybody, but knowing that there's a limit and a boundary to also caring for yourself. And okay, what do you need this week to refill your cup? What do you need from us this week? Do you need help with homework this week? Do you need help with this? While still being empathetic toward your sibling that has a disability,
Yeah ... , Knowing that it's probably gonna get interrupted, you know- because someone starts screaming or because, you need to suction or whatever it might be. Mm-hmm. But I think it all goes back to that boundary setting of, we all love our sibling. However, we also want you to be you, and you to be Cole, and people know who you [00:52:00] are- yeah and you know, those kinds of things. But 'cause eventually your empathy, if you're overused and overworked, your empathy- Burn out ... is gonna turn into resentment. Yes. You know? And you never want that. Yeah.
Deonna: Well, and even like what you were talking about a second ago, like I was thinking about like on social media, I've witnessed a lot of parents where you don't even know they have another kid. Yeah. And and I know I'm not gonna get into the debate about whether you show your kids on social media or not. That's a whole different deal. - And then you'll see some other sibling all of a sudden pop up and you're like, "Whoa, I didn't know they had other kids." I mean, that's how much some of these moms favor one child over the- other to the point where you don't even know, it really is the complete invisibility. You don't even know they exist, and it's, I don't know, it just makes me so sad to think about the fact that these kids can feel that way.
But my son now cares about every marginalized group. He cares about... it bleeds into, people being like, [00:53:00] let's say, racist or something. He's
Deanna Dawson: like, ""
Deonna: Oh, no, we are not gonna say that." Like- Yeah ... and you know, I mean, he just it's like a sensitivity- ... across the board that I'm not sure he would have had in that same level if some of this hadn't happened to us. So I mean, it bleeds into every single- yeah ... every single part of their life,
Rhandyl: well, and I like how you said if you over-empathize, it can turn into resentment. I was actually- Mm-hmm ...... just reading something today about how ... It's basically that same thought that someone was just giving and giving, and was trying to respond to every message- and trying to be there for everyone all of the time and- people were relying on them as if this person was some sort of an idol. And at what point do you set boundaries to- avoid , that, ultimately it was a, Christian-based thing that I was reading, and it was like at some point you have to help them rely on God and not just yourself because you're just going to burn out. And so I really liked that
Deanna Dawson: and we've [00:54:00] had that trouble with our kiddo too, the,, religious view that you're always supposed to put others above yourself. Yeah. Put others above- ... yourself. Love God, love others. Love God- But your guys like- ... love others. Yep. Yeah. And my daughter's like, "It says nothing in here about, loving myself and putting myself first." And she's like, "That's like the sin part." And I'm like, "Oh, hold on." But we gotta revamp that, you know? That's what- You have to take care of yourself ...
Rhandyl: that's what this society is- it's like what it, yeah ... now, like all, a lot about, so much about self-love- Yeah ... right now. Yeah. Yeah, a little to the max.
Deanna Dawson: Yeah. And you're like, there's a healthy balance of all- Yeah ... of those things. You cannot be empathetic and take care of other people if you're not taking care of yourself- Right or you know where your identity is, you know?
Deonna: Well, and most- It's just so hard ... most disabled kids, at least in our house do not care about everyone else outside of theirsel- health or wellness. Like my daughter, and I love her, and she just is obsessed with me and loves me so much. She does not care if I feel good. She does not care if I [00:55:00] take a shower. Like I, I have to every night peel myself away from her at night and be like, "I have to go shower now." And she's
Deanna Dawson: like, ""
Deonna: No." And I'm like- Ugh ... "I have to. I will stink, and no one will want to be my friend." And she's like, "" no, I don't care. Just stay in here," and so it's I'm sure most disabled kids don't even s- a lot of times have the cognitive abilities to be like, "Okay, I'm gonna look at my mom," and be like, "She needs certain things." So- ... you have to do it and whether they like it or not. And I mean- ... that's just the way it is.
. So we're gonna read some of the comments from our question that we put. Every time we do something like this, we ask you guys questions so that we have a more cohesive overlook of what we're talking about, because us three only know our three experiences. Our... But Samantha Rauh, who we... I hope I'm saying that right, that we talked about earlier, she was the one that said she was also a glass child.
But she said, ultimately not mistaking physical [00:56:00] presence with nurturing. And that's something I've even had to talk to my husband about. He'll be like, "Well, I was with Allie all day." And I'm like, "I know, but you have to sit there and watch a movie or read a book or do something that is fun." And I accidentally do that a lot with my disabled child. Me too. And I'm like, oh my gosh I feel like I , spent a lot of time with her, but really I wasn't. I was just doing her meds and doing her fluids- You were there ... and doing this and doing that. Yeah, that's- And so that was kind of a big wake-up call for me to see this person saying this about their disabled child or possibly disabled sibling, you know?
Cole might think we're just spending all this quality time with Allie, but we're really not- Yeah ... half the time. We're working and, you know, doing the nursing type stuff. And so that was interesting to me to kind of remind myself, oops. But then that makes it where you have to spend even more time [00:57:00] with the disabled kid. So it's like, oh my gosh. We try to mix it. Well, I remember thinking beyond- we're watching a movie and working, you know? Right. We try to do two things at once.
Rhandyl: Yeah. And I talked about this in previous episodes, but for me, this was even before I had Barrett, but when Remi was young and there was so much going on, and she was so fragile that it just... there was this role in my life that was not parental. It was more medical. Yeah. And not really like her mom and there was a point probably when she was a couple years old that a switch just flipped and I was like, you know, I have to step back away from this. It was when we actually finally had decent medical staff that could help us at home. I think I was able to, you know, being able to step back from that. But this comment made me think about, I know we're talking about like the sibling situation, but really, and now I try to be conscious of the daily [00:58:00] routine of I am here, I'm present physically, but I need to be emotionally present with Remi as well.
'Cause it is harder when you have... remi's non-verbal. Cognitively like we don't really know fully- ... but I mean, I know she understands everything I say, but she can't communicate back. And so that's a lot harder and I feel a lot of guilt with, I f- I feel like I'm constantly talking to my son 'cause he's at that age, like he's n- just needs constant attention all the time, and he's always been a Velcro kid, and so I'm having way more conversations with him than I am with Remi.
Mainly because of, I mean, her disabilities, , so I'm constantly trying to be aware of making sure that my time with her isn't just like medical or just being- Yeah ... there physically present. But it is hard. And seeing, yes, like you said, seeing this Samantha girl that does feel like she was a glass child say this makes me even more make sure that- that's something that I'm aware of daily to avoid.
. Yeah. So our next two comments [00:59:00] are similar, and the first is m- from Michelle Dorsett. She said, "We do our best to give them individual time, whether that's just going to the store by themselves with mom or dad, watching a movie or TV show together before bed, going for ice cream, et cetera."
And then our friend Alex Dragich, we've had her on the podcast before. She said, we make an overly conscious effort to be present for our three boys, but it's still extremely hard. We take Mattie everywhere with us to make sure we can attend the boys' practices and games."
So this, I think we kinda touched on this earlier about trying to g- give each kid individual attention but what are your thoughts on this, Deanna?
Deanna Dawson: I agree. I think all these things... It's hard 'cause, like, all of them are so hard, and- Mm-hmm. Mm-hmm even in typical families they're hard. You know, just having- Yeah ... four kids to start with is hard- Yeah ... to have attention on all of them. Oh, yeah. But j- I think both of those people have good ideas, just making an effort [01:00:00] and,, taking your disabled kid everywhere you can, and that's good quality time for everybody, just being a family unit instead of having Mom have to go here and Dad have to go here- or whoever have to go, Grandma, and all the things, you know. I think it is really good to focus on that family cohesiveness of, everybody being together. It's good for your marriage. It's good for your kiddos to see that y'all are united and doing all the things together. I think that's really good,
and then doing individual time when you can, and when... you know, and it doesn't have to be going somewhere. It can be, "Hey, let's go in this other room, and you- Yeah ... and I are gonna play- Mm-hmm ...... Uno together," or, , y- "Hey, do you wanna go on my walk with me in the morning?" You know, things like that- Mm-hmm ...... that are really just little things that make a big difference. Yeah.
Deonna: Yeah. This other comment we got was Inclusion Amplified, and they said they're a sibling with a disability, and they also are a mom with disabilities. I'm like, there's two of these girls. But she said, "Lots of one-on-one time with both or all the kids," and she said, "Remember, the [01:01:00] disabled child also wants fun parent time, not caregiver time," which we just talked about. Mm-hmm. Mm-hmm. "" Let them talk about their experiences and feelings, and let big and honest feelings be okay," which we were talking about with you- Yeah ... a minute ago. Find spaces with families that look like yours, which I feel like we all have started having that- mm-hmm. Mm-hmm ...... and it's really helped me a lot and my kids, and peers who are in their shoes, which our sons know each other. We have other friends who have kids that know each other, and it does help a lot. She said she's a big believer in mental health services even when you're not in crisis, which- ... yeah, Deanna can- Hi ... attest to that being important. I should probably take note on that. And then making sure you take care of yourself and modeling to your kids, "I'm gonna take care of myself," make your tank be full.
And I think that's really good for the siblings to see is mom is able to also do what she wants. She's able to have [01:02:00] things she wants to do or hopes or dreams or whatever. Just because you have a disabled person in your family doesn't mean that's all over, 'cause I'm sure my son actually thought that there for a while. I mean, it was pretty tough. I think it felt like our life was completely over, and over time we all realized it wasn't. But you know, me and my husband were acting like that for years, I mean, just barely keeping our head above water, and I think that's how he felt because he was seeing us act that way. And I don't know if we could have done any better in that time, but you know, when you get a little further removed from it, you can kind of start to realize, okay
I used to feel super guilty to even laugh or smile. I mean, that sounds- ... really stupid, but he was the same way. It eventually becomes- he would say, "I feel guilty having fun when she's, holding on for dear life in the hospital." And it was like- Yeah ... "Yeah, I, I do, too." I mean, I f- ... he would say that, and I was like, "Yeah, I f- I feel the same way." But I was still... It's like the [01:03:00] big joke in our house is that we took Cole to do all these really fun, amazing things in Houston without her, and she was like, "What the crap?" So n- now we've taken her back to every single place we've went with him- so she could do the thing, 'cause she was like- ... "That is so messed up." But- That's awesome ... I liked that. That was a lot of good things in one comment. Yeah. So I really liked that one. She- Yeah.
Deanna Dawson: I liked that one, too. And - I was laughing because I was a stay-at-home mom for 10 years just working at preschool or whatever, you know. Yeah. So I was with the kids almost all the time. And so there's two points to this, but the first one is my husband was really protective of my self-care time, which was really helpful. Yeah. You know, he's "Nope, mom's not putting you to bed tonight. Tonight's my night." "She is resting. She's in the den. She's watching, , her favorite show, and you can't bother her." And so just having a spouse that's going to be protective of your self-care, too, and vice versa, is really helpful.
And the second thing, you're talking about life being over I really... You know, I was a therapist before we [01:04:00] got Joy, and- You know, I wasn't sure what my life was gonna look like after that. And so I kinda took this big sabbatical while we fostered and did all these things, and then kinda went back into private practice, and then decided to start to co-own this company that I have. And I remember , my 15-year-old, coming in, and he said, "Wow, Mom, what a strong, independent woman you are." Oh. And he was like, you know, being funny. Yeah. But I was like- You're like, "I know I am." "Yeah, thank you. I am. I can do hard things here." Thank you. I'm, like, raising kids and doing- Yes ... hard things. Thank you for being sarcastic with me, but also- Yeah. But also yes. But also you're hilarious. But also yes. Very true. Thank you. I love that. Kids should just be like, "Yeah, I know. Okay, moving on." I'm like, "Yeah, I used to have a life before all of you people came here, you know?" And I was a regular human being. I didn't just stay at home all day- ... doing your laundry.
Deonna: I know. Doesn't it just blow their mind when you say "Yeah, I used to do whatever," and they just are like, "What?" I can't imagine. And, "I did have- No ... an existence before you, but whatever." Yes. Yes, very true. Yeah, they don't care. No.
My [01:05:00] only tips or tricks or whatever that I could think of is when our daughter, you know, like when her nursing comes in, one of us is hanging around with the nurse and kind of doing like nighttime, like stuff like that. But the other one goes and, you know, like Dane has his special shows with Cole. They watch these specific shows together, and it's like their thing. Or I watch, like me and Cole watch Abbott Elementary together, and we love it.
And it's like having those little things that are just you and him, like me and him started playing tennis together and pickleball together, which we're not that good, but, you know, that's that thing, and it's something that me and him go do, and it's fun and, you know, just having some things that you do on- ... like at least a weekly basis and just checking in.
I remember one time our pediatrician asked us, "Are you talking to Cole for at least 20 minutes a day?" And I was like, "Yes." You know? I got [01:06:00] offended practically. But I do think- ... some parents maybe aren't talking to- Yeah ... their kids at all, you know? It's just like survival. But just making sure, like we take him to Tech games without Allie. We've taken him on trips without Allie. And- Yeah ... we've also, I've taken Allie on some trips without him, you know? I mean, it goes- Right ... both ways.
But yeah, like I was saying, I don't think that our disabled child is gonna care if Cole gets equal treatment, so you have to care. She does not care. Like she just- Yeah ... it's not her thing. But and I do think therapy for both kids is good at different points if they need it.
But even having a church relationship, having a church family is really good for your family overall. As far as what's happened with our family we go together, all four of us, and we go eat dinner every Wednesday night together if we can before. I mean, just having these like mini traditions as a group is good, too, but- [01:07:00] Yeah doesn't always happen, like we say, but we do our best.
So before our last question, tell us a little bit about your therapy practice in Lubbock and how people can find you guys.
Deanna Dawson: Yeah. So I co-own the Springs Therapy Group with Dr. Eggleston. And we have 11 therapists now, that's good and probably half of us are very comfortable working with kids with disabilities and their families. ... we actually have really awesome autism social groups that are really fun for the kids. That's awesome ... , we do those throughout the school year and the summer just to kinda give kids with autism a special place to be and make friends and learn some, good skills and get to be- who they wanna be and stim if they wanna stim and walk around- Yeah ... if they wanna walk around. You know, the things that- Well- ... you don't get to do everywhere. Yeah. Yeah. And so we do that.
We also do lots of trauma therapy for caregivers and for siblings of kids with [01:08:00] disabilities, of course because there's a lot to that. A lot of our disabilities come from traumatic experiences. And so, just doing a lot of EMDR and some things that are really helpful for families.
And then we do a lot of marriage therapy, of course. As- ... we know, it's very straining on your marriage to- Yeah ... have a disabled child. Yeah. And so we do lots of couples therapy for this population.
And- , , we also have OT and speech therapy in our clinic as well- Janda ... so fun. Shout out to Janda. Yes. Shout out Janda. Yeah. And she's amazing and so we have that. And then we also are in the same building- with Legacy Developmental Pediatrics, which they do med management and stuff for,
Deonna: Where are you located in town? I know my kid comes there, but I never bring her. Somebody else does.
Deanna Dawson: I know. I never get to see you. And one of our goals too, the reason that we created this place, is to have multiple therapists so that parents and kids have easy access at the same time. Yeah. [01:09:00] So one of our biggest goals is for kids to get therapy at the same time their parents are getting therapy- Yeah ... so they don't have to add on- Oh, that's great ... one more appointment. That's great. You know? To parents, we give every excuse not to get ourselves filled up. And so I wanna take one more away from that and just make it easier. Yeah ... and so a lot of my families will do that. The mama will be getting some self-care, and then the kiddo's- ... getting some- I love that ... some therapy as well.
And so we're located on 82nd and University, Okay, yeah ... in Lubbock. And , you can visit our website at thespringstherapy.com. And you can check out all of our people and our groups and our classes. Yeah. We have adoption support group that goes all year long which also includes a lot of disabled families. And then we're doing a really cool technology class this summer for kids in technology, just, Yeah ... kind of a- Oh, fun ... kind of an info session.
And then we're doing a social-emotional group for kids in elementary school. We have two sessions of [01:10:00] that. And then we're also doing a transitioning into middle school group for girls. Oh, gosh. So just... I know. Just talking about- Allie might have to come to that. Seriously, yeah. So if you're going... Is she going into middle school? No, next year. Oh, I'm like- Next year, yeah. Oh. We're just- Oh my gosh. No, I can't even. I was like, "I can't." Good. No. Oh my gosh.
Um, So we're having that group just to kind of transition to middle school, That's a tough one ... for our girls. Wow. It's a toughie. Yeah. So yeah. Yeah. That's counselor, it's gonna be-
Deonna: Allie loves coming there. She loves seeing you and Janda and Dane. It's funny 'cause your business partner is Dane. So it's Dan- Oh, ... Deonna and Dane, and then we're, my husband's name's Dane. And so- Yeah. Someti- one time somebody's like- Function- ... "Are y'all the therapy duo?" And I was like, "Oh, no. You do not- ... wanna l- take advice from, especially my husband. Oh my gosh." But yeah.
Deanna Dawson: Well, it's funny because- Allie loves Dane so much ... Allie loves Dane. Yes. And I, this is just a funny disabled world. You have to have humor in here, and so I just [01:11:00] always laugh at Dane about this because Allie came to see me the first time, and , I don't know if she had made him something in session. She brings crafts- Yeah ... sometimes, and we put it together. But he tried to hand her something one time. Oh. And I just, like- My gosh ... in my head, I'm like, "Oh, come on, man. You know she's paralyzed." "We gotta get you out more." And so-
Deonna: And she looks at adults like, "Are you serious right now?" Yeah. But
Deanna Dawson: yeah. She really does, and it cracks me up. And so I love it that the people in my office that don't work with disabled people get to be exposed to that. Mm-hmm. Because it just gives everybody so much more empathy, and just, like- Yeah. Compassion- Yes ... and exposure. That's funny though. And I love it. But he made me laugh. And so I'm always like- He would? "Hey, remember, don't hand her something." You know? It's like, ""God."
Deonna: We've had so many doctors who definitely know that she's paralyzed, like they're treating her in the ICU, and they'll be like, "Fist bump." And she just looks at them like, "Are you serious?" Like- Oh my gosh. It's so funny. But it's like- But it's like she just-
Deanna Dawson: Yeah, people wave at Joy a lot. You're like, "Well, she can't see you." You're like, "Okay, well, that was a waste- Don't remember ... of energy. Whatever." Yeah. [01:12:00] It's hilarious.
Deonna: It's the thought that counts. It is. No, she loves coming in there. They're all being sweet. But she does love coming. She's the sweetie. And getting to tell about our family trauma, so you know. Yeah. She,
Deanna Dawson: and it's funny 'cause she doesn't wanna talk about it anyway, so you know that's how-
Deonna: Oh, I know ... therapy goes sometimes. Mom was like, "What'd you talk to Ms. Deanna about?" She's "Oh, nothing." I'm like, "Okay, well, yeah, that sounds about right." That's great. Little stinker. Awesome.
Deanna Dawson: Two thumbs up. And we do accept insurance and all that stuff too, so. Yes. We- Yes ... we try to make it as cost-effective as possible.
Deonna: That's a huge thing. Yeah. So our last question of the day is, if a parent is listening today and worried they may have unintentionally, created glass child dynamics, screwed up their child forever, you know- ... what what's one daily habit or one simple change they can make to help their child feel seen now? Just something simple.
Deanna Dawson: So I think what I really hooked onto today is just being open with feelings, and so, creating a habit in your house of checking in every [01:13:00] day. Yeah ... you know, we do happy crappy at dinner every night, and everybody gets to say a happy and a crappy, you know? That's funny. And Erin and I are really specific about what we wanna share.
And then those questions that we had talked about earlier, you know, what's the hardest part about having a sibling with special needs? Just making it a conversation and everybody being okay with it, and your anxiety being lowered when you're talking about those things. I think the- Mm-hmm ...... emotional side of it, just bringing that more to the- Yeah ... forefront could be really helpful for kiddos and teenagers experiencing glass child stuff. So, that's what I would think would be a really good, a good way to do that. I love that. Just one little change. Yeah.
Rhandyl: Thank you so much, Deanna. Yeah. We've really enjoyed this conversation. I'm glad that you were able to join us 'cause this is such a sensitive topic for a lot of people. Mm-hmm. Mm-hmm. It's hard. It's, yeah it's hard to talk about. It's hard for me to think about, honestly, sometimes., So , just being aware, like I said in the beginning, I think the more you're aware and the more [01:14:00] you're putting your kids' feelings and needs and your listening ears on- ... the better it's gonna be. It's not, it's inevitable that our life is like what it is, but we can help some. Yeah.
Deanna Dawson: And it's also kind of a newer thing- Yeah ... you know? Because disabled people didn't really live in- No ... homes with their siblings. Yeah. Yeah. Yeah. You know? It- Like institutionalized ... it's a new- Yeah ... a new thing, so there's lots of new things we could do. Yeah.
Deonna: Yeah. We're watching Little House on the Prairie right now, and Allie's like, "" what would have happened if that- ... happened to me back then?" I was like, "You would be dead." And she's like- Yes ... "Oh, cool. Okay." 100%, yeah. But I mean, yeah, it's like- ... disabled kids are living in such a different way. It's, yeah- mm-hmm it's something that is being experienced- Yeah. And I think that's, I'm glad we're having these- ... way more than even 40 years ago. Of course. Oh, yeah. Totally.
Rhandyl: And I think the more conversations we have like this about things, the better, because- ... it's just, like, why we're doing this anyway is- for awareness. And so having these topics that aren't easy to talk about or think about is why we're doing [01:15:00] it, so. Yeah.
Deanna Dawson: Even my mom, that generation. Yeah. Stu said, "We have no experience in this. We had no disabled people that we knew ever." No. Yeah. You know? 'Cause they- Not really they just weren't at school really, they weren't at home. I mean, it was just interesting, this is something new and hopefully- Figure out ... hopefully figure it out well along the way.
Rhandyl: Yeah. I don't know. Let's make this a better place. Yep. It's getting there. Yes. The awareness and the inclusion. But it's gotta get better. It's still not great, so. Yes. Mm-hmm. . Thank you so much.
Deanna Dawson: Yeah. Thank y'all.
**Disclaimer
Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.