Episode 9 Siblings of students with disabilities

[00:00:01] Speaker A: Hi, I'm Maggie. [00:00:02] Speaker B: And I'm Nicole. Welcome to the DAC Dyslexia and Coffee podcast. We are so happy you could join us. We are both moms and dyslexia interventionists who want to talk about our students and children, what dyslexia is, how it affects our kids. Strategies to help and topics related to other learning disabilities will also be covered in this podcast. Parents are not alone, and we want to give a voice to the concerns and struggles we are all having. This is a safe place to learn more about how to help our children grow and succeed in school, in the world. Grab a cup of coffee and enjoy the conversation. [00:00:37] Speaker A: Welcome, everybody, to episode nine of DAC Dyslexia and Coffee podcast. We like to start our show with the concept of the week. So that is our opportunity to pull back the curtain a little bit, let you into our intervention sessions, teach a little bit about what content we teach here at our center. So last week, we talked about a syllable. A syllable, as a reminder, is a word or a part of a word with one vowel sound. There are six different syllable types in English, and we're going to kind of go through each one, starting with the first, most common syllable type, which is the closed syllable. So a closed syllable only has one vowel, and it ends with at least one consonant. In a closed syllable, the vowel is generally going to say its short sound, which is its most common sound. So, example, the word cat. Only one vowel ends with at least one consonant. Therefore, that vowel is short, and we say it as cat. [00:01:59] Speaker B: So today's topic was kind of hard for us to write. So we'll see how this goes. I'm going to be very honest with you. It was a very tough topic for us. So the topic today is siblings of students with disabilities. [00:02:13] Speaker A: Yeah, this is a big one. I think one of the reasons we struggled to write this is because we both live it and it's thorny. [00:02:26] Speaker B: Yeah, definitely. [00:02:28] Speaker A: So I think I want to remind us all at the top of this episode that nothing Nicole or I say is set in stone or means that because this is how we experience something, that that is how every family is going to experience this. Just want to be very clear that we're here to have a discussion, not a. You know, there's only one way to think about this. This is just perspective. [00:02:58] Speaker B: Everybody's families will have different journeys. [00:03:01] Speaker A: Exactly, exactly. And of course, this is not going to just be contained to one episode either. This is something that touches a lot of aspects of family life. And so we're going to continue to explore these topics in a lot of different episodes. So you'll be hearing more from us on how this affects the greater family unit, correct? Yeah. [00:03:33] Speaker B: So students with disabilities, they get a lot of attention, and sometimes that can cause some concerns for siblings and the entire family is affected. So we just want to bring that right out into the open. Just because one person in the family has the diagnosis, that doesn't mean it doesn't impact the entire family unit. [00:03:57] Speaker A: Yes, yes. So one of the things, right, we've said this before, giving the diagnosis a name is really important. It's not only important for that person that it affects. Right. So not just the directly affected person, but also for their siblings. This gives everyone a common language to be able to talk about it in the house. [00:04:32] Speaker B: And as a family culture, you want to talk about the disability openly in the house, use the name and how it impacts every member and give every member a chance to express their feelings on it, because there's going to be big feelings. [00:04:48] Speaker A: Oh, yeah, there's big feelings. Some children really may struggle with the idea that they might be able to catch this disability from their sibling. Being able to explain in plain, simple language is really important. Right. Being able to take that fear and say, that's. That's not how this works. Right. And head that off a little bit, but also allow that sibling to express it. So it's not that we want to shut down that conversation, which I think sometimes is our, like, knee jerk response. I know it is. For me as a mom, sometimes when my kids say something that's not correct. [00:05:52] Speaker B: Or difficult to explain. [00:05:54] Speaker A: Yes. [00:05:55] Speaker B: Right. Because depending on the student, the child's age, we might have to explain it different ways at different times, too. [00:06:03] Speaker A: Yep, absolutely. Absolutely. And it can be my knee jerk response as a mom to be like, nope, that's not it. We're just not going to talk about that right now. Guilty as charged. In terms of, do I just say that to my kids? Yes, I do. [00:06:23] Speaker B: Yes, I do. And sometimes you think your child understands it, and then they turn around out of the blue, even though you've tried to be pretty upfront with it and realize, and they ask, well, am I going to catch this someday? And you're like, I told you it's born that way. That is how she was made, and there's nothing to catch. It's not like a virus, but sometimes you have to go back and re explain it. [00:06:56] Speaker A: Yeah. And that. I think this can be especially difficult with disorders like dyslexia or language disorder or ADHD, because there is a real familial component. There is a high likelihood that if you do have one kid in the family with one of those disorders that you might have to or you might have a parent. Right. So it is. It is kind of thorny because in all reality, yeah. It actually is more likely that if you have one sibling with some of these disorders, that you will have more than one sibling with that disorder. It also is likely that if we're talking about older kids and adults, those siblings that have grown up and are exploring having their own families, yes. There is a familial genetic component to some of these disorders. So all the more reason to have an open, honest culture about that in your home and not perpetuate the stigma. Right. Not try, not try to keep that going, but reinforce that. No, it isn't something you catch, but it is something that you have maybe more or less likelihood of getting based on just the genetic soup. So this can get really thorny when kids are kind of feeling that jealousy. And I think this happens on both sides of the table. Right. I think that siblings who are not the affected person. Right. So if you are a brother or sister, and your brother or sister has dyslexia or autism or any. Right. Any kind of developmental delay, the behavioral expectations may be different of that sibling. And there can be some real feelings about that, for sure. [00:09:28] Speaker B: Definitely. And then I can flip the other way, too. And then the other child could be jealous of their sibling because it's easier for them. [00:09:40] Speaker A: Yes. [00:09:41] Speaker B: So you can get it on both sides, right? [00:09:45] Speaker A: Yeah, absolutely. I mean, I. I can think of several examples of some families that I work with where one or two members of the family have a disability and one does not. And there are some real feelings on both sides. I remember I myself do have a disability. I'm actually legally blind, and a lot of the people I know are, you know, kind of from that community, from that crowd and a close family tie of mine. Two out of the three siblings had this disorder where they were blind or they had gone blind, really. And the fully sighted sibling had some really big, really big feelings about, like, well, why do they get to go do all these, like, fun outings and all these fun things and, like, I have to sit home and not do these things. Right. And the other two are like, well, that's nice. You get to drive a car. Nobody's really wrong here. I think that's what makes it really thorny. [00:11:06] Speaker B: Right, right. [00:11:06] Speaker A: Nobody's wrong. It's okay that they are having those feelings, that's super real. Super real. And having the kind of family culture that that's okay. And that's not, you know, shushed. [00:11:26] Speaker B: Exactly. [00:11:27] Speaker A: That's a big. [00:11:29] Speaker B: And I mean, these are hard concepts for adults. Right, totally. So when kids see these extra accommodations or fun games that a student with disability can get, it's really hard for them to understand why they're getting those things when they don't understand it. [00:11:46] Speaker A: Right, right. I mean, always kind of going back to that. Right. What is fair is not always equal, and what is equal is not always fair. Even as an adult, when I hear that phrase, it's like, yeah, but why? It's hard. [00:12:05] Speaker B: It is hard. Yeah. And then being the parent of children that are very different and they, you know, they ask those questions and you understand why they're asking their questions, but then you also have to try to explain that it's not an easy concept. Right? [00:12:27] Speaker A: No, no, it's not. It's really not. So I'm going to pivot a little bit. We're going to kind of talk about some statistics associated with this, with this population. So some things that are interesting. So siblings of people with disabilities is actually one of the most under researched groups. There is not a lot of information to find on this population. This is a real shame because outside of parents, siblings spend the most time. Right. With their brother or sister with a disability. And, yeah, like we said before, if one person is affected in a family, the whole family unit is affected. And so it can be really formative. So it would be, if you're a researcher out there, you know, you're looking for some under researched populations, that would be a really, really good one to get some real picture of what might be going on for these guys. Exactly. So some things that are out there. So studies from the Ohio colleges of Medicine and the government research center say that siblings of a student with a disability, they're 1.7 more times as likely to have behavior problems at school. They're 2.1 times more likely to have behavior problems at home, and 1.6 times more likely to get into trouble in. [00:14:09] Speaker B: General, which I think that's really low. I'm sorry. [00:14:14] Speaker A: I do, too. I do, too. I think that kind of speaks to that under researched population. I don't know fully how this research was conducted or, you know, what the sample size was, but I think it is a lot more than that because you really are dealing with a lot of emotions. And let's just really face it, if you have a, if you're coming from a family and you have siblings with a disability, and there is interventions to go to and outside therapies to go to. And your kind of whole life revolves around this one sibling with a disability, which can happen, which, by the way, I'm not blaming families for. You got to do like, you have to do it. So when you have all of that and even just the kind of constant chaos really, that is associated with that kind of running here. Running here, running here. Have to do this. Have to do this. That. Yes. That is bound to. It's got to come out somewhere. It's got to. So, yeah, I agree. I think those statistics are actually quite a bit lower than what I would have expected to see from the research. [00:15:33] Speaker B: Yeah. There's also some statistical evidence that siblings do experience higher rates of anxiety, depression and guilt, which makes sense. Right? [00:15:44] Speaker A: Yeah. [00:15:45] Speaker B: But there's also some really good statistics we found from various research articles. And I think this speaks to the other part. Right. I don't know if anybody's seen the meme, but if you want to know how to treat somebody with a disability, look at their sibling. This is that part, right? [00:16:04] Speaker A: Yep. Yep. [00:16:06] Speaker B: Because they show greater empathy. Right. Because they've learned it. Greater tolerance for individual differences, they have greater resilience, more compassion, they're more independent, they have more leadership, they're more mature, and they have a lot more patience. [00:16:27] Speaker A: Yeah. [00:16:28] Speaker B: Yeah. [00:16:29] Speaker A: And I think, I mean, anecdotally, I have definitely experienced that with some siblings. My background being in special education, I coach Special Olympics. I've been very heavily involved in that world for a really long time, and I have experienced some just so cool relationships with brothers and sisters of pretty severely disabled populations that really just. I think that's exactly right. If you really want to know how to treat, especially if you're looking at how do I treat this individual in front of me, how do I treat this person? What is my approach? You watch a sibling and you're like, oh, okay, that's how. That's how. Because that is, I mean, most of the time. Yeah, that is who I'm going to kind of take. My, my lead from studies really show that having a proactive approach with these siblings leads to the best outcome. So leaning into the hard conversations, reading lots and lots of books about people with disabilities, and it doesn't have to only be the disability that a affects your household, by the way. It doesn't have to only be this one narrow field that can be a good jumping off point. But really, when we look at when social scientists look at how do we build a more compassionate population? They know that really, one of the only ways to do that is by having, like, a firsthand experience with somebody you don't really understand. That's really the only ways to actually build that muscle. But one of the ways that does work is having a secondary experience. So reading a story or hearing secondhand accounts of how to treat people and how to understand differences and all those things, that does work. So it is something to do, and that is something that can be done as a whole family unit, also allowing that person. Right. I think every kid in a family needs one on one time with their parents. [00:19:10] Speaker B: Yeah. And also, I think when you're in the community and they see somebody with a disability and they ask you a question and you don't know the answer, or you get embarrassed or, oh, my gosh, that's a great opportunity to have those conversations. You know, maybe you ask, or if the person, you can answer the question, and then if the person is willing, you know, sometimes in the community, everybody hears your kids, and when they ask you that question in front of everybody. Right. [00:19:49] Speaker A: Yep. [00:19:50] Speaker B: Been there, been there, done that. Sometimes just letting that other person answer the question for you. [00:19:58] Speaker A: Yeah. [00:19:58] Speaker B: That can help because they can answer it. Right? [00:20:01] Speaker A: Yeah. [00:20:02] Speaker B: So, I mean, I think that's just another way to model that instead of just trying to. Shh. Let's go, let's go. [00:20:11] Speaker A: Yeah. Sometimes that you see or just assume how that other person wants to be treated, you know, I mean, I like, it's. That is always kind of a touchy one for me, too, is. Yeah. Sometimes that person in the community, they're under no obligation to answer your kid's question, but a lot of times, they are willing to do so, especially if it's a kid. [00:20:34] Speaker B: Right. Because they want them to know and they understand that kids are curious. [00:20:39] Speaker A: Yeah. And I think even saying to your kid, you're right to ask the question. Right, right. You know, I think sometimes we kind of train out that of our kids when we're like, shh. [00:20:51] Speaker B: Don't, don't. [00:20:51] Speaker A: Oh, no, don't say that. Don't say that. It's like, well, now you're actually really right to ask that question. Maybe we could ask out on the car next time. [00:21:04] Speaker B: We get home. Yeah, that's probably a better idea. [00:21:08] Speaker A: Or if it's a question that you kind of deem embarrassing, talk about. Well, okay. Why was it the tone that you used? Was it the word? You know, there's a lot of different. [00:21:20] Speaker B: Ways that you could have asked that question that would have been maybe a little bit more appropriate. [00:21:25] Speaker A: Yeah, I mean, I could think of last year we were at the pumpkin patch with my kids, and there was a gentleman with an eye patch. [00:21:33] Speaker B: I. [00:21:34] Speaker A: And, you know, my kids are pretty little at the time. They were three and five, and they were like, mom, mom, it's a pirate. And it was like, I mean, my immediate was like to crawl in a hole. And this gentleman was very gracious, and he said, no, I'm not a pirate. I just had an injury. And, you know, he was nice and kind of got down on their level, and it was like, okay, that was actually a really important moment. I think that actually. And they mean, they kind of still talk about that, and they've kind of been like, some people don't have eyes, you know? I mean, they're like, some people have lost an eye. Do you know that? Or did you know that some people have lost a leg or an arm? I mean, that has really kind of expanded into a greater awareness for what other people are going through. And so, yes, as a mom, wanted to crawl into a hole, and I know this stuff. Right. So I think what I want to offer is compassion is, I kind of know from textbooks, right. What is the quote unquote right way to handle these things? And it still makes me embarrassed as a mom and my own kid, you know, it's like, oh, my God, that's a pirate. [00:23:01] Speaker B: Oh, no. Yes. I think we've all been there as parents. [00:23:06] Speaker A: Yes. [00:23:07] Speaker B: Many, many times. [00:23:08] Speaker A: Many, many times. Yeah. [00:23:12] Speaker B: So back to your families with individual times with siblings. I think it's the one on one time is really important to help the siblings feel connected. Also, being able to talk to your child about the disability is important. Children have really great imaginations, and they might think something that you would never even consider. [00:23:37] Speaker A: Yes. [00:23:38] Speaker B: That may be untrue about their sibling or the disability. And, yeah, sometimes it's better just to let them know the real. What's real, because they can make up. [00:23:50] Speaker A: Lots of different things. They sure can. [00:23:52] Speaker B: Yeah, they can. [00:23:52] Speaker A: They sure can. They sure can. [00:23:54] Speaker B: They're very good at that. [00:23:55] Speaker A: They are very good at that. I think another point to consider is a lot of times the sibling feels like they have to be the leader and they feel like they have to be the caregiver or perfect or be the caregiver for their sibling with a disability, and it's really pretty important to get on ahead of that kind of thing. Yeah. It's really important that siblings help each other, right? Yes, I definitely. I think just being an older sibling in general can lead to this sort of feeling. And I think it gets more, more complicated when one of the siblings has a disability. And that kind of internal pressure can be a recipe for anxiety and depression and some pretty severe backlash later in life. And so it's just really important to be aware of that is something that can happen. And it's really important for those kids to be kits and to be treated like a child in the family and not a de facto parent. There are a lot of ways that. Yeah. Encouraging a sibling to help if it's a physical disability. Right. Encouraging them to help with carrying a backpack or help, you know, help with certain tasks. Absolutely. But to be the parent and then caregiver role, that's really not appropriate, and it's not the job of a sibling. And so to kind of keep that and name that, too. I mean, be very specific when you're talking to your kids and you are not their parent. I am the parenthood sometimes. Sometimes. [00:26:10] Speaker B: And I think the other thing that we really need to talk about is sometimes the sibling or even the person with the disability will need some extra support, and you might have to talk to a professional or connect with other siblings that have the same concerns. So don't be afraid to reach out to somebody, counselor or somebody who has that experience that can talk to your kids and be a safe place for them to ask questions and tell them about their feelings and be able to yell and do whatever they need to. [00:26:46] Speaker A: Right. Those are all really important things. So just as adults. Right. We need resources. Kids did, too. And a good place to start if you're really needing those resources is talking to other families that, you know, often. Right. That's where we kind of get some very good information. School counselors can be a good resource for. They've got their, they've got their feelers in the community for other counseling services available or support groups or play groups. There are some resources, and depending on your community and where you live, there are some kind of formal and informal resources out there that even just having someone else who's kind of in your same boat or boat adjacent can really, can really be helpful. And it's important to seek that, seek those out. [00:27:54] Speaker B: There's also some organizations that have sibling activities where siblings can go meet other siblings, and then they do fun things together so that they can be each other's support. They're going through similar things, and they can use each other as kind of what we do. You know, when we find another parent that is going through the same thing. We talk to them and, you know, we kind of relate to our experiences, and they do the same things in. [00:28:28] Speaker A: Those groups, for sure. And I think as your kid gets older, too, I think this is. I know why we'll struggle with this, but sometimes you're not going to be the person your kid is going to go to with, like, their deepest, darkest. They may not want to tell you that they really are just angry at this situation, but making sure that there are other adults in that siblings field that you do know and trust, that is really important, because not just this topic. Right. Your kid may not want to tell you all their deepest, darkest, and it becomes not really our job to know at a certain point, which that sucks. I don't like that part of the motherhood, but it does become, okay, how do we get you these resources and how the line between what really is private for your kid and what is your right to know becomes very, very blurry. And there's no right or wrong, but it is something to be aware of that if your kid is at least talking to an adult that you know and trust, that's good. You're doing your job. That's what you want. So, okay, we made it to the end. We made it. Shall I say we solved it? Is this a solved if you. I don't think so. No, I don't think there's a solved. [00:30:18] Speaker B: Learning. [00:30:19] Speaker A: Yeah, exactly. Exactly. So we hope that we at least provided some information and some support to everybody, all of our listeners, and we like to end our show by talking about life outside of dyslexia. So what's going on outside of dyslexia? [00:30:46] Speaker B: Well, I think just kind of relating back to our topic today. This is a hard topic for us in our house. And, you know, sometimes I think one of my daughters understands something, and then she'll say something and I'll have to re explain it and re explain it. And it makes me step back and think, as our kids grow, you have to come back to the topic so they understand it more deeply because, you know, different ages. Yeah. You know, you might start with just a little explanation, and then you have to build on that. Right. Because as they grow and their understanding gets deeper, you have to explain it again in a way that's a little bit deeper every time. So it's just a really hard topic, especially when you know that it's a long term topic. [00:31:44] Speaker A: Yeah. I think for me in my house, the sibling rivalry period, I think has arrived. My kids have really, I have been very lucky. My kids are close in age, and they, because of COVID and the time that my daughter was born, quite frankly, they were each other's play thing, and that was it. So either get along or you get to play alone forever. And that was kind of the deal in our house up until pretty recently. And now, oh, boy. There has just been so much bickering lately. Just the tiny little competitive behaviors that are really interesting. And it's got its complexities because there are some things that my youngest can do very well that my oldest really struggles with. And he gets super mad. For example, whistling. My daughter can whistle. And my son is so angry that she can wrestle, which, of course, she's obsessed with it, which, side note, it is annoying. It is. But he cannot tolerate that she can do something that he cannot. And so that has been what has been going on in the Gunther house. Yeah. [00:33:27] Speaker B: There you go. [00:33:27] Speaker A: Hey, you wanted outside of dyslexia as outside. Any advice? [00:33:37] Speaker B: No. No, not really. [00:33:41] Speaker A: Well, thank you, everybody, for listening to this episode of Dyslexia and Coffee. Please follow us on social media and reach out if you have any questions or would like us to discuss a topic. If you do like our show, please follow us and rate us. That is how we get more followers, and that is how we can help our families. Thanks for listening. [00:34:04] Speaker B: Thank you.