00;00;09;19 - 00;00;31;23 Allie No one else can understand that no one else has been in our shoes, even if they don't have the same interests or the same hobbies. They still have that experience of having a sibling with a disability. It's hard to explain, and it's hard to accurately share that because you not only have your own feelings, but you're also your memories, your lived experience. 00;00;32;05 - 00;00;51;02 Allie So I think these kids having a place to talk about it with one another, I think that might even help them if they are struggling process how they feel even finally say it out loud to someone. 00;00;55;07 - 00;01;06;29 Courtney Welcome to Adjusting the Sails, a podcast for parents, caregivers and service providers for children with Disabilities. I'm your host, Courtney Ring Staff, and this is my co-host, Melina Danko. 00;01;07;09 - 00;01;10;01 Melina Hi, everyone. We are so glad you've joined us. 00;01;10;09 - 00;01;40;15 Courtney Melina is the assistant director of communications and marketing at the Center for Excellence in Disabilities and the project director of the West Virginia Family two Family Health Information Center. I am a licensed social worker in Morgantown, West Virginia, and I've created this podcast to be a platform for parents, caregivers and service providers can come together, exchange information, educate one another, and find support and connections through the relatable topic discussions. 00;01;41;09 - 00;01;50;06 Courtney We cannot change the direction of the wind or the strength of the storm, but together we can adjust the sails. 00;01;55;00 - 00;02;33;14 Allie My name is Ali and I am an ad specialist here at the city. My brother has autism. I can relate to the sibling workshops of having a space to talk to other kids my age or older and relating to them with that shared experience of having a sibling that has a disability. Just having that outlet for them. There is a six year age difference between my brother and I, so when he was around three, my mom noticed that he wasn't, you know, hitting milestones like a typical child and was very vigilant and very watchful of that. 00;02;33;14 - 00;02;54;19 Allie And as soon as she was able to get him to the doctor, she did. I remember actually going with my mom and my brother to go to testing. There's multiple doctor visits. You have to get a lot of paper signed and see a lot of different specialists to get the autism diagnosis. But I was there. My mom made sure that I was involved. 00;02;55;02 - 00;03;24;23 Allie She really reminded me, this isn't scary. This isn't something bad. This is just something we need to know so that we can make sure we're taking the right steps to make sure that he has everything that he needs to where he can flourish. Being younger, probably nine. That's that's a lot to take on. But I think the way that she delivered it really helped me understand what was going on and not question it so much or be, you know, in the dark of what this was. 00;03;24;29 - 00;03;50;11 Allie Once that diagnosis was given, he was immediately put into speech therapy, occupational therapy and physical therapy. If I wasn't in school, I was allowed to come and I was able to be a part of those sessions or see what was going on. So she made sure that I was very involved in all aspects of care, so that if I had questions, I was able to ask them or know what he was doing in a day or if she was talking about something. 00;03;50;11 - 00;04;10;28 Allie I was aware she always said, I ask a lot of questions and I've been that way for a long time. She said, I'm very curious. Very. I just want to know. I want to soak it all up. I'm still that way. And so she knew giving me that. I like that firsthand experience. I was getting my questions answered, but also I was able to process it. 00;04;11;17 - 00;04;31;25 Allie I think sometimes I'm not a parent, but I can see how as a parent you might want to shield your child away from something you may think is too much for them or emotionally too much. But I think if you give it to them in a way that, you know, they would understand or they process things, it's much easier for everyone involved. 00;04;32;19 - 00;04;59;03 Allie He was in therapy for a long time and then we moved from Florida to Maryland. And when we moved to Maryland, he actually was able to start preschool early. Having him in the same elementary school with me, I liked that a lot because I was able to be there for him in case, you know, he was having a bad day, just was struggling with something or maybe just needed a reminder that I was there for him. 00;04;59;11 - 00;05;20;29 Allie If he needed anything, I'm right across the hallway. We would be able to see each other, sometimes even going to lunch. So it was nice to have that that beginning stage of going into school in that transition of having, you know, me there. I think it's always been positive in my head when I think of my childhood of at home and even at school. 00;05;21;21 - 00;05;47;13 Allie It was nice because I'm the older sister I want to protect. I want to make sure he's okay when I check in. And so being involved in everything really gave me that. But it also taught me a lot too. My mom was very big into allowing me to have a space to talk, you know, about my frustrations of what was going on or how how did I feel about things or do we need to talk about anything? 00;05;47;13 - 00;06;11;13 Allie Does she have that? I feel like, you know, he's getting more attention than me or, you know, something unfair. But my mom was very big into We Are Equals. We are her two kids. She's not going to treat either one of us differently. So, you know, she was hard on me for getting bad grades. It was also hard on him because, you know, she expected that same level because she knows what he can do. 00;06;11;15 - 00;06;28;00 Allie She is the same way. Even today, I'm 27 and she still well, you know, hey, did you do that? And I'm like, yes, I did, because you're you're like that when I was younger. And I want to make sure I'm, you know, get my stuff done. Through the years when he was in elementary school, he did have an aide. 00;06;28;09 - 00;06;51;03 Allie So that was a great reassurance and also a great thing for him just to have with him to get through elementary school, which is such a pivotal time, I feel like, in childhood. But when he got to middle school and high school, he no longer had an aide. That was a whole new experience for everyone because, you know, him having that aide was in his IEP. 00;06;51;11 - 00;07;12;22 Allie But then when we transitioned to middle school and high school, there is no longer that aide. But also now multiple people are involved in the IEP. And when my brother in middle school, my mom actually had me involved in the IEP meetings, she wanted me to understand the process. She wanted me to be an advocate before I started attending them. 00;07;12;22 - 00;07;34;01 Allie You know, she let me know if you think something is not right that they're offering or, you know, you think you have a better solution, speak up and let them know you're at home with me. You see what's going on. And also because I'm older, I'd had those teachers, so I was able to kind of know their teaching style and how the class would work. 00;07;34;11 - 00;08;02;15 Allie So having that was also very nice of helping prep him to know what to expect, but being a part of the IEPs that has translated into my job now of helping others know what the process is, what questions to ask or what to know before going in. It's a very daunting process. And so I think my mom also liked having me with her because is another sounding board. 00;08;02;15 - 00;08;26;27 Allie It was another person to be like, what did you think of this? Or, you know, let's do you think that we should have another meeting to discuss? Not really taught me advocacy, but I think when he hit high school, my mom started involving him in the IEP as well because that's his education. He needs to speak up and say, this is what I need to be successful in your classroom. 00;08;27;20 - 00;08;40;08 Allie My mom was very big into standing up for yourself, advocating for yourself, knowing what your strengths and your weaknesses are, and playing to those, but still getting the support when it's there. 00;08;41;08 - 00;09;04;05 Melina I think it's so genius that your mom had you because you had that real life, hands on experience in those classrooms in that school. So you many times could have known better than she. No, that's not going to work. Or wait a second. How are we supposed to do this when he has to be all the way across the school? 00;09;04;11 - 00;09;14;06 Melina You know, just those little logistical things probably would ring in your head that could have never been considered. 00;09;14;19 - 00;09;41;17 Allie During an IEP meeting in middle school and high school. Each teacher has to sign off on that IEP, agreeing that they will provide that accommodation for the child. One of my brother's accommodations was that he would receive notes after class. He struggles with processing what's written on the board, spoken out loud to getting it on the paper. He's able to process just listening, but getting them written down is a struggle sometimes. 00;09;42;20 - 00;10;05;22 Allie The teacher insisted. He does not need those. He does not need them. I give them everything they need. It's all written on the board and I talk about it. But in that meeting I knew I'd had him before. He goes so quickly and he writes very quickly and wipes it off the board. So I knew there is no way if I'm struggling to keep up in class, there's no way this kid is going to be able to. 00;10;06;01 - 00;10;24;12 Allie And it wasn't a shot at Mark saying that he wouldn't be able to. It's, you know, any child. There was frustrations among my class of saying, did you get this? Did you know? Did you write that down? It was because the teacher just was not understanding that he was just going too quickly. He knows the material so well. 00;10;24;18 - 00;10;45;24 Allie We don't this is new to us. So in that meeting, you know, I said, I don't think so. I struggled with your class. I really think I know that you write from a sheet and you have notes yourself. I think if you gave those to him, he would be totally fine. He was very frustrated with that, but he did end up giving them to him and it did help him in the long run. 00;10;46;11 - 00;11;15;15 Allie But I think definitely me having some of these teachers beforehand gave, you know, my mom and my brother an advantage going into that those IEP meetings because I could remember, oh, well, he needs this accommodation and they're going to fight you on this because they don't feel he's going to need it or they might compromise with you, which it shouldn't be compromising, but unfortunately it happens. 00;11;16;04 - 00;11;36;11 Allie So I think that's another reason why my mom had me be a part of those IEP meetings was because I remember how it was. I had that firsthand experience, but also I, I really enjoyed school. So if I had a complaint, then she knew it was serious. There is a certain teacher. I was like, I'm getting really frustrated. 00;11;36;11 - 00;11;49;05 Allie I just I'm reaching out. It's just not clicking for me and I'm trying to get more notes. She would keep that in mind too, for when my brother got to school and to see if he had that same teacher and how to handle that situation. 00;11;50;15 - 00;12;17;07 Melina And I think that's something that the listeners would have one of those light bulb moments like, Oh, wow, I never thought about that. I'm going to, you know, see, can my other child come in in the meeting or is there someone else that I can bring in? Because I think a lot of times parents don't necessarily think about bringing in a sibling to a situation like that. 00;12;17;07 - 00;12;41;24 Melina But that's like a perfect example of one you knowing better than everybody else in the room and to you learning how to speak up and say, no, that's not going to work. And seeing that you're learning those advocacy skills, you know, at a very young age, which I think is really cool. 00;12;43;15 - 00;13;07;28 Allie Thank you. I think that's probably the biggest thing throughout my childhood that I learned was advocacy. I didn't know that was the word. I just always thought it was speaking up for myself and always giving a voice to, you know, the little guy that they say. But to me, it was just, this makes sense. Why aren't we giving this to someone? 00;13;07;28 - 00;13;32;13 Allie This is a simple request. Why wouldn't you want someone to be successful and give them tools if you're able to? And that's my mom very much pushes that point. Even today, there's tools out there. Do you not be afraid to use them? Don't be afraid to speak up if something isn't working for you because you don't want to put yourself in turmoil to just please other people or to just get by. 00;13;32;23 - 00;13;50;12 Allie You want to make sure that you're wholeheartedly in there and you're able to do what you need. I think even being in my position now, I've seen that like, you know, if someone comes to me and they're saying, this isn't working, I'll just deal with it. No, let's let's figure out a solution. I think that's another thing it taught was problem solving. 00;13;51;07 - 00;14;06;20 Allie Being in those meetings of being a part of it, I'm sure people could see that's a lot to put on a child and to ask of a child. But every step of the way I was being asked, Are you comfortable? Do you want to do this? Is this something you want to be involved in? If you don't, that's totally okay. 00;14;06;28 - 00;14;25;25 Allie You know, you can stay home or you could, you know, go back to class, whatever you want. It was very much my decision. Having your older child or even your younger child be a part of that, teaches you how to not only speak up for yourself, but for others. And to problem solve the problem solving is so big. 00;14;26;25 - 00;14;47;22 Allie You know, I look at a situation and I'm like, okay, well, what are our options? And some people might get frustrated with that. I was like, Why are you always trying to think of new things? And it's like, because someone might be struggling with that or, you know, they've brought that to us. Why not try and figure something out, research it, someone else probably is have the same problem, so why not explore options? 00;14;48;02 - 00;15;10;08 Allie So I think that's something, especially maybe in the school system that isn't explored a lot. So I think me saying, well, let's try something different. Let's, you know, I know this is how this classroom works. He maybe let's try this for him instead it was you're in the home with them. That's your sibling. You're going to want you know, what's best for them. 00;15;10;08 - 00;15;30;05 Allie You want to be involved in some way. That's a great way to do it because, you know, as a older sister, I'm helping him with homework in school. You know, having being involved in that, I knew what was expected of him. And also, you know, what my boundary should be when I'm doing homework with him or, you know, working with him. 00;15;30;15 - 00;16;01;28 Allie Okay. He needs to, you know, he has an extra day to do this worksheet. Let's give him he works on it. And then if he needs help, he can come to me or something like that. But I think it makes your family unit feel like a team. You are involved and you're able to shoulder that way. And even emotionally, I think, you know, my mom was very good checking in and reassuring, but also making sure that both of us were comfortable in being involved in that level. 00;16;02;23 - 00;16;15;25 Allie So that was always really nice and I think that helped me be able to process how I feel and understand where that's coming from as well. 00;16;15;25 - 00;16;27;00 Courtney What were some of the major challenges that you remember seeing your brother kind of go through as a child, as you all were kind of like navigating the diagnosis and like also the school system. 00;16;27;18 - 00;16;56;28 Allie I think when he was younger, the biggest challenge that we faced was the sensory issues. Fluorescent lights for some children are very aggravating. They can see the pulsating of the lights. They can actually hear them, hear the hum of them. And so that can be very overwhelming already. But throw them into a grocery store or a big box store like Walmart that's ten times more overwhelming. 00;16;57;08 - 00;17;20;13 Allie Or even a restaurant where you have the clinking of the glasses, the clinking of the silverware against the plates, people talking. As an adult, sometimes you struggle with that to process your own thoughts, process you know what you're about to say and what you're thinking and feeling. So that was one thing we struggled with, was understanding why he was feeling the way he was. 00;17;21;10 - 00;17;46;19 Allie He would scream in middle of Walmart, in the middle of a restaurant because he was so overwhelmed and just didn't know how to regulate himself. Instead of my mom shying away and keeping him away from that experience, she was like, We have to figure out how we can get him to regulate himself and to enjoy the experience, you know, to be able to go to the store with us, to go to a restaurant. 00;17;46;27 - 00;18;13;04 Allie She didn't want to deprive him of that. It was a really tough thing because even being younger, you are like, oh my gosh, my brother is screaming in the middle of Walmart and all these people are looking at us and this is so awkward and so embarrassing, but then you're like, He can't help that. That's you. You know, you got other kids over here hooting and hollering, too, if you want to be honest. 00;18;13;14 - 00;18;33;19 Allie So I think that was a really big struggle, but it was a lot of trial and error of understanding. Okay, well, let's try headphones to where he can't really hear all the noises and give him a toy and see if that will be enough. Okay. It was a little better. There's still some screaming. Well, maybe with the lights. 00;18;33;19 - 00;19;01;08 Allie Let's try sunglasses. And so, you know, you have this kid sitting in the in the car with headphones and sunglasses on and he was happy as could be sitting in the car. And, you know, that was it was like a sigh of relief for my mom because you could see she was like, oh, I was able to get him settled into where he was comfortable being in this setting because she knew if we can problem solve now, this is going to give him tools later in life. 00;19;01;08 - 00;19;28;14 Allie I think that was something she's always thought about is okay, I know him in the here and now, but how do we make sure this translates across when he gets older and making sure that when he was younger he had that school the tools to carry over another issue problem I would say in the school system was getting people to adhere to the IEP. 00;19;29;06 - 00;19;52;25 Allie My brother. It would be old school terms but was high functioning. You could say a lot of people don't realize he has autism until he blatantly says I have autism, this is why I'm struggling or this is why I'm a little socially awkward. I missed social cues. He was in mainstream classrooms. He did not have it need, would not get pulled out. 00;19;53;11 - 00;20;24;12 Allie So his teachers were not understanding why he needed these. Well, he's he's in my classroom. He's fine. You know, in reality, we're at home trying to work with him. And he doesn't have the notes for he, you know, got a worksheet. Another thing that Mark struggles with his organization, I think that's pretty universal for some. But, you know, we had a worksheet and it's like do Friday and it's now Tuesday of next week. 00;20;24;27 - 00;20;47;07 Allie So there's certain things, you know, they're in place for a reason. It's not that he can't do the work. He just needs an extra day or he needs just a little bit of support. So I think that's something I know teachers are overworked and I know that they have a lot on their plate. But I think getting them to understand these are just simple things. 00;20;47;18 - 00;21;15;07 Allie And if you could support him, then you don't have to worry about the student in your class because he has the supports in place to be able to be independent and complete his work and be in class and participate. Now, something that's come up is he is now 21 and he's going to be graduating from WVU. He's very excited, but that's a whole new transition. 00;21;15;18 - 00;21;42;00 Allie That's a new transition for everyone, but especially him, you know, he's been in school for how long now? He transition adapted to college. College actually was all of his accommodations in one he would need an extra day for work. He would need ample time of knowing when a test would be so that he could study but also ask for extra time if need be, to take that test and also turning things in a day later. 00;21;42;07 - 00;22;09;03 Allie So college is already that structure. So he did not go into college with a504 plan at all. So that was his decision. And that was, you know, my mom brought that up. But narrow transitioning from graduation to getting a job in his career field, that's a very new territory and there's a lot of feelings to go through. There's a lot of questions and understanding. 00;22;09;11 - 00;22;32;27 Allie I think, you know, everyone when you get to that age or even when you're at that point in your life, a new job or starting your career, it's a scary time because you want to make sure that you're you're in the right job. You know, you're going to be able to survive and you feel good about it. But also like you're 21, you're you're young, but you have some life experience, but you don't have a lot. 00;22;33;11 - 00;22;59;07 Allie So I think you're still trying to figure yourself out. So that's something that they don't have a handbook for parenting. I feel like they do, but not really. And I'm not a parent myself, but I know a lot of it is just figuring it out. You're human, trying to raise another human. And so I think adding this layer of, you know, a disability, it's not something that's bad or a burden. 00;22;59;17 - 00;23;25;07 Allie It's just something new to figure out and how to adapt to. I think my mom has always talked about how, like I said, there isn't a handbook for this. This isn't a how to guide of how to raise a child with a disability. It's really individualized. But there is still universal experiences. But with each new transition, she's like, I wish someone would just just tell me how to do this. 00;23;25;07 - 00;23;49;24 Allie But she's also like, I don't know if that one size fits all method would even work in this instance because every child is so different and their needs are different. She's like, But all I can do is be a parent and you know, we can be a family unit of support and be there for him and still give him that independence and the ability to explore who he is, what he wants out of life. 00;23;50;06 - 00;24;00;04 Allie And, you know, if he needs that booster, he needs a resource that, you know, we'll be right there with him, helping him figure it out and making sure we're directing him in the right way. 00;24;01;24 - 00;24;29;12 Melina Your experience could be very different than anybody else's experience, just like you just said about parenting. You know, one siblings experiences, one siblings experience. But it's really interesting when you think about it because you are the big sister, you are six years older, and so you do naturally have that nurturing and big sister kind of innate quality that, okay, this is my little brother, I'm going to look out for him. 00;24;29;12 - 00;24;54;29 Melina I'm the big sister. I'm, you know, going to help. And so when you were talking about as he's gotten older and started to get into adulthood, how you have had to look at things differently was interesting. So could you share some of that about now that he is starting to be an adult and and you are as well? 00;24;56;16 - 00;25;29;04 Allie Absolutely. So he is 21. Everyone at 21. You think that you know everything and that's perfectly fine. That's a natural progression of life being 27. I also have that time in my life. It was a little later around that same time, but navigating that, being older than him and my mom being older, it's very interesting and it's kind of comical to me because we get so frustrated with him sometimes being like, just. 00;25;29;08 - 00;25;29;28 Courtney Just listen. 00;25;30;05 - 00;25;50;04 Allie Just do this. Please. And my mom was like, I just don't know. Like, is this do does he need a support? Is this like is this part of the autism? Is this and, you know, it took my fiancee being like, he's a 21 year old boy. This is this is natural. I was a 21 year old boy. This is what they do. 00;25;50;18 - 00;26;09;28 Allie So it's funny to me because my mom and I are like, oh, you're right. You know, this is this is a natural progression. And like, my dad, once he thought about it, he was like, yeah, I was the same way at 21. He, you know, everyone's older, so you forget about that or, you know, you're at a different point in your life. 00;26;09;28 - 00;26;35;21 Allie So it's it's really funny to just see, to look back on how the interactions have changed. And, you know, now that he's entering adulthood, he's starting to date and he's interested in girls or like he's interested in other things now, like interest just generally interest wise. But for dating, you know, he asks for our advice of what to do. 00;26;35;21 - 00;26;53;18 Allie And that's such a interesting transition to me, or just an interesting thing like I think I siblings you do that anyways. So this is something very universal and very normal. But I'm just like I this is, I think as an older sibling, I'm like, oh my gosh, no, you're still a little baby. Don't grow up yet. Wait, wait, wait. 00;26;53;28 - 00;27;13;26 Allie It's really nice, though, because with the six year difference, I'm engaged. I'm going to be married. But I've had this person in my life for five years. So he's also been around my brother for five years. He's been with my family for that long. So he's also seen him grow up and, you know, go through that transition of high school to college. 00;27;14;09 - 00;27;39;21 Allie So him being there, it's been nice because my brother has had someone you can talk to your dad, but it's not the same. Sometimes it's getting like an outside someone to talk to because your parents are your parents, they're going to share in a little extra. You know, give you a little something. So him being able to talk to my fiancee about dating my fiancee, he's like, I'm not I hope I gave him good advice. 00;27;39;21 - 00;28;01;23 Allie I hope this I've directed him in the right way. But it's something that, you know, it's new to all of us. It's new because we've lived that already. But then we're like, Oh, gosh, let's take a step back and remember what it was like or, you know, how to navigate that. So it's it's very it's a normal experience, I guess it's a universal thing that everybody goes through. 00;28;02;06 - 00;28;24;12 Allie And it's just it's so great to see him grow like that and to reach these milestones and to explore that. And also him understanding himself of understanding, you know, this is what I like. This is what I don't like. This worked for me. This didn't I really liked school, but I didn't like X, Y and Z because of it. 00;28;24;12 - 00;28;47;06 Allie Like him being able to self-reflect and figure him himself out. I feel like that's such a pivotal age for it. Anyways, you're fresh out of college, you're going into life and like you're going to experience so much more. So him going through these phases and like learning his hobbies and likes, it's been awesome to see, but it's also been such a new experience for us as well. 00;28;47;23 - 00;29;16;07 Allie Navigating, you know, his emotional side of it, of him trying to understand how he feels or, you know, if he's fixating on something that's something very common with kids with autism is, you know, they fixate or they have something that's constant. So sometimes it's school, sometimes it's just an experience. So making sure, you know, we're not just you're fine. 00;29;16;11 - 00;29;51;12 Allie It's all right. Keep going. My mom's making sure. Okay, here's your tools. Let's break it down to where? If I'm not here, your sister's not here for a quick phone call or, you know, to hang out, you're able to at least put it on the back burner until you can have a full discussion with us to be able to work through it to a certain point until you want to ask for advice or you get to that point, it's still there's still the advocacy in there so that, you know, empowerment of you can do this if you want to do it, we will make sure you're able to do it translating across. 00;29;51;28 - 00;30;17;15 Allie But I think right now it's we've we've gotten through school, we've gotten through childhood, and now it's just getting that transition to be an adult. And it's been awesome. It's been interesting, but it's been great as a sibling just to watch him grow to get to that point, because I think when he was younger, part of when he was getting that autism diagnosis, he was nonverbal. 00;30;18;14 - 00;30;43;00 Allie There were sounds and noises, but there was no words. So to see him fully go through and, you know, get to that point where he you know, he talks to us, he's very articulate. He's going for his marketing degree. So you definitely have to have a good sense of writing and understanding what people are looking for. So it's very cool to see that and to experience that. 00;30;43;23 - 00;31;02;12 Allie And it's always it's always been a positive seeing him grow because I think we're all such cheerleaders for him. That's such, you know, and the family, you're like you're cheering on your family members of being like, Yeah, you can do it. You've got this like you reach your next goal. I think this is like we all did this. 00;31;02;12 - 00;31;31;22 Allie We all worked so hard and we supported you. We got you to the like woo! Like he did that on his own. He was independent, you know, we just helped set the building blocks up a little easier to where he had what he needed to progress. So the transitions are hard, but I think if you're working through them and you're making sure that you're cheering each other on even when it gets hard, that's such a great thing. 00;31;31;22 - 00;31;43;10 Allie And really just you build each other up and it doesn't feel so alone and all on some just one person in the family to universal. 00;31;43;10 - 00;32;12;00 Courtney I was thinking about the launching of our sub shops. We have lots of parents like pulling in the comments and the registration forms, things like my child feels resent towards their sibling because they get a lot of attention or they are annoying to them and they don't understand their needs and things like that and so if you were talking to a parent about ways to like mitigate that resentment, what would you advise that they do? 00;32;12;00 - 00;32;38;15 Allie I would tell the parent, take a moment, just you in that child, pull them away, maybe even do just are you in that child day? Go and go to like their favorite restaurant or maybe somewhere that they really like, spend the day with them and approach that subject of Why do you feel so mad at your sibling? Is it something that I'm doing? 00;32;39;01 - 00;33;02;23 Allie Is it something that they're doing and really understand where they're coming from and where those feelings are coming from? Because depending on the disability and what limitations are, that parent might have to spend more time with that child. And so understanding, well, it feels like you spend so much time with them, but you don't spend time with me. 00;33;03;23 - 00;33;41;12 Allie You need to understand and see. Okay. All right. I see how you could feel frustrated with that and giving them solutions and letting them pick that solution. I think opening up that channel of communication to her, then if they feel that way again, they can come to you, is vital because if they don't feel they can come to you and those feelings just build up and then you don't want your children to have resentment towards their sibling or, you know, even you do you want them to feel involved, to feel that they're equal to their sibling because they are. 00;33;42;09 - 00;34;11;11 Allie You don't favor one or the other. You have them for a reason, checking in and seeing where those feelings are stemming from or what action or, you know, if something was said, I think just really making sure that you ask questions, check in and you get absolutely give them options of solutions. Okay. Well, let's make sure once a month we have you and Mommy Day. 00;34;11;11 - 00;34;40;19 Allie Are you mommy and daddy like or you know, we all do this activity at home together or, you know, hey, you can come with me to their physical therapy appointment or so you can see what's going on. If your child is feeling these frustrations or is mad at their sibling and you're not quite sure how to fix it, kids are resilient and they know they might not understand what they're feeling, but they might be able to articulate it to you. 00;34;41;01 - 00;35;03;03 Allie So definitely just ask ask them, you know, are you mad? Are you sad? What made you feel this way? Because a lot of the times they're also thinking about an instance or they're thinking they're seeing actions that might just. You don't mean them in a malicious way or, you know, this is you're just taking care of your other child. 00;35;03;16 - 00;35;26;01 Allie It may come off differently to someone that, you know, they're just little nuggets. They're not fully processing emotions or they quite they don't have the same toolbox as you to unravel how they feel, why they feel it. And, you know, how to go through that and navigate it. So helping giving them those building blocks of tools of communication is awesome. 00;35;26;01 - 00;35;28;01 Allie And just to help all of you. 00;35;29;18 - 00;35;56;23 Courtney In that step shop training, there was a little excerpt of a book and I don't have it memorized, but I can link it in the show notes. But the book basically was the story that a sibling herself wrote about her other sister who did not have a disability, and then their younger brother who did have a disability. And she put in this excerpt that she and her sister, who were like two years apart, had already decided by the age of like nine years old that they were going to grow up, they were not going to get married, they were not going to have kids. 00;35;56;23 - 00;36;11;24 Courtney They were going to live together with their brother. And one sibling would work night shift taking, you know, have a job. The other one, work day shift having a job. That way they would both be home with the brother at all times. And that's a lot of responsibility for an eight and a nine year old child to be planning for. 00;36;12;03 - 00;36;34;00 Courtney And I don't I don't know anything else other than just that excerpt that I read about how, you know, the parents talked about the future with these little girls or anything like that. I don't know. But I do know that that was at least their understanding of what their responsibility to their brother would be. And living in West Virginia, you know, we live in a situation of family, takes care of family, we live in intergenerational housing. 00;36;34;00 - 00;36;51;15 Courtney We live where grand families are raising their kids. Siblings are stepping up and taking care of one another. It's just kind of Appalachian culture. Do you remember feeling pressures like that or what kind of conversations have been had like that? And, you know, will you be a potential caregiver for your brother, for the future, or is he even going to need that kind of support? 00;36;51;20 - 00;37;02;27 Courtney I'm just wondering about, you know, like what you felt your responsibility was and how your mom and your parents kind of helped you work through that early on. 00;37;04;00 - 00;37;37;28 Allie It was when my mom would approach the subject of his disability. It was, your brother needs this because X, Y and Z. There is always an explanation. And I think that really helped me to understand, okay, it's not, you know, favoritism or anything like that. It's because he needs us. So having that thought process and understanding, I'm sure, like this little girls, it made them realize, okay, he's going to need this support for, you know, his whole life. 00;37;38;13 - 00;38;01;06 Allie And being the older sibling again, you want to protect, you want to make sure that he has what he needs, that he's taken care of. My mom, as I got older, did have that discussion with me of if something happens to me or, you know, whenever I unfortunately pass away, what are you comfortable doing? Are you okay? Taking over? 00;38;02;00 - 00;38;28;05 Allie It was never a guilt of like, you have to do this. You have to. It was always, what do you feel comfortable? What do you think you can handle? And I think just being able to be involved in his care, be involved in all these steps, I have the perspective of, you know, the same thing of if he needs it, he can live with me, I'll support him or, you know, make sure he gets the resources he needs. 00;38;28;21 - 00;38;47;26 Allie I think Mark would need a caregiver directly. I think he like the Appalachian culture. You know, you support one another, you support family and you're there for them. I always say people in West Virginia, they might not know you, but they'll give you the shirt off their back if it means it'll help you. I think that's just sort of ingrained in us as well. 00;38;47;26 - 00;39;05;04 Allie So I'll always be there for him. I'll always be someone he can talk to, someone he can lean on. He knows that and he knows that he can come to me and my mom involved him in those conversation as well of you don't have to live with me and you don't have to live with her. You can live independently. 00;39;05;04 - 00;39;25;17 Allie We can get to that point with you, but know that it's always there for you. If you feel overwhelmed, if you feel you know that you need to live with one of us, know that that's an option. Because I had told them I'm comfortable doing this when I started dating my fiance. That was something I put up there upfront. 00;39;26;14 - 00;39;48;21 Allie I said, I'm not sure if that time will ever come, but it's a possibility that, you know, he would ask to live with us if we you know, if we progress, if we keep dating, you're just like, all right, I guess we'll figure it out if that time comes. So knowing that he was accepting of that was, first of all, amazing in my book. 00;39;48;21 - 00;40;11;21 Allie I was like, all right, awesome. But I think, you know, it's a it's a tough conversation to have, but you have to have it. I involving the siblings, involving even the child themselves or adult and really giving people what are you able to handle? You don't have to handle anything. We can figure another step out. We can figure another process out. 00;40;11;28 - 00;40;44;12 Allie But giving them that option, it's so vital because I think that led to me never feeling like some phrase as a burden. I don't think it's a burden. I think it's just it's something that you'll have to adapt to or something to figure out. So I think having that communication with my mom, but knowing my mom, my brother of being like, you're, you know, if you need this, it's here or whatever you need, we just let me know. 00;40;44;20 - 00;41;09;02 Allie It took that feeling of guilt away or of resentment because you don't want to have a difficult conversation. Nobody does. Nobody wants to talk about how they're feeling or, you know, potentially hurt someone's feelings or, you know, say something that's a little harsh. But I think when you have someone in your family that has a disability, you have those conversations much more often. 00;41;10;04 - 00;41;41;16 Allie And I don't think that's a bad thing. I think that's making sure that we're all on the same page. We all are checking in on how we feel. Not only are you supporting that person for supporting each other and making sure that you know, emotionally, physically, that we're okay because, you know, my parents are going to get older and if my brother's still with them, how can I make sure that, you know, as they're aging, they have what they need as caregivers, but also as my parents and humans. 00;41;41;25 - 00;42;17;02 Allie And then also, how can I make sure that my brother feels supported and is still getting what he needs? My mom has always said that I've been a little mom. I popped out of the womb as a mom, so that nurturing side has always been there. But I having this experience, it translates in so many other ways the transition of everyone getting older is an even bigger conversation and you don't want to have it, but you should have it. 00;42;17;20 - 00;42;25;18 Allie At the end of the day, that's the takeaways. You've got to talk about it. You've got to. 00;42;25;18 - 00;42;55;02 Melina How did you feel like with your friendships and having, you know, friends come over or boyfriends or girlfriends or social situations? How did how did that work out in your family with your brother still being pretty young, but also still working through some of his sensory and just growing up with a child with autism? How did that go again? 00;42;55;02 - 00;43;25;12 Allie My mom was very big on your equal. So if you have a friend over, she's able have a friend over growing up, I really enjoyed going to other people's houses, but that was just because I was curious. Again, I like to ask questions. I like to learn new things. So I just like to go to new places and see and also see how my friends lived. 00;43;25;12 - 00;44;00;26 Allie So that I thought was always just very interesting and I enjoyed it. But also I enjoyed just being with my friends. When people would come over to my house, I would have a discussion or just throw it out there of This is my brother. He might be loud, he might be, you know, in the same spaces we are, we might not get total privacy because, you know, he is my brother and I do like to hang out with him and like to involve him in things, you know, they would come over and if they would be like, wow, he's so loud, why is he screaming or Why is he so weird? 00;44;00;26 - 00;44;20;14 Allie I'd be like, Nope, I don't know if I want to be friends with you anymore because you're being mean to him already. You're not even really interacting with him and you're being mean. I let you know before that, you know, this is just something that he can't control. This is just what it is. And, you know, we're allowed so he can be allowed to. 00;44;20;14 - 00;44;43;28 Allie It's okay. As I got older and into middle school and high school, I would still, you know, go over to friends houses or go to outings. It wasn't, I don't think any different than a typical I guess, growing up. I just, you know, if someone was like, why is he so awkward or why is this? I'm like, Well, he has autism, that's it. 00;44;44;23 - 00;45;03;26 Allie And I'm like, He just struggles with that. And, you know, he's learning. He's going through it just like we were. And, you know, I never was, like, ashamed or embarrassed of it. It was more so just, are you going to accept it or are you going to shy away from it? I'm not going to judge you if you shy away from it. 00;45;04;08 - 00;45;29;24 Allie But I just want to educate you and inform you that this is my situation. It's not a bad thing, it's just how it is dating. I think I would definitely have a little more of a discussion about it because I think when you're young, you're like, Oh, we can date forever. And la la la and it's perfect, but and you know, you're like, Well, this is my brother. 00;45;29;24 - 00;45;52;15 Allie He's going to be with me. And, you know, I hope you get along. And if you don't or if you are mean to him, we're not going to be dating anymore. I think it's sort of like any other sibling relationship growing up of, you know, don't be mean to them or if you don't get along with them, then it's going to cause trouble between you and I because that's my family. 00;45;52;24 - 00;46;14;25 Allie It's just like if you're going to fight with my parents or, you know, you're going to be rude to them, that's not okay. That's not fair. Through college too, I didn't really date, but that wasn't because of anything. It was just this very focus on school. And so when I met my fiancee, it was very foreign to me, I guess, of having like a more adult relationship. 00;46;15;10 - 00;46;38;06 Allie And so to navigate that myself and then to also, you know, have meet my family and have a meet my brother, it was a much more in-depth conversation because then as we were dating, I did have that conversation of there will be that time potentially that, you know, he might want to live with us or we might have to give him more support in a way he knew that was very important to me. 00;46;38;13 - 00;46;59;07 Allie I was like, You have to tell me if that's something you're uncomfortable with. It was a heavy conversation, but it was a realistic conversation of if you're wanting to spend your life with me or you're looking in that way, this is something that has to be brought up in terms of talking about it with people. I'm very take it or leave it in adulthood. 00;46;59;07 - 00;47;25;29 Allie I've gained an awesome group of friends and they are so supportive and honestly, I introduced them to my brother and I was like, Hey, this is Mark. And you know, here he is. And they were so accepting of him and they support him. And my brother is very into music. He actually taught himself how to play the guitar and he is absolutely incredible. 00;47;25;29 - 00;47;47;04 Allie And he can't even read music. He can't lose sleep. But he I mean, he taught himself and he actually records himself and makes full production songs and he posts them like he has quite a cult following on Instagram and people interview him for his music and. Like that's, that's a whole other side of him that like, is so cool to see and so amazing to watch. 00;47;47;11 - 00;48;03;28 Allie There's my friends are supportive of him in that and I love that. Like I mean so much to me, but also like when I'm with them, they're talking, they're like, Oh, what's he doing now? Like, you know, he needs to come over again. Like, that was so fun when he was over here and like, he sees that now too. 00;48;03;28 - 00;48;23;26 Allie And he's like, Oh, like, this is awesome. And again, it goes back to that. I have that experience. And so he's like, Do I have this to look forward to? Like, do I get to make sure, like my friendships are like so supportive and healthy? Like, I'm like, yes, absolutely. You will find people in your life. You're going to find friends, I promise. 00;48;23;26 - 00;48;57;05 Allie Like we both I guess we're late bloomers and finding, you know, our people are our friends. So again, me having that experience and him seeing that is just like, oh, okay, like this is so great, this is awesome. But yeah, again, like I'm very take it or leave it and I think maybe some kids might struggle with that of, Oh, this is my sibling and I feel embarrassed or I struggle with some of their behaviors, but over time they might realize, you know, that's just the way it is. 00;48;57;05 - 00;49;17;14 Allie It's not a bad thing is just take it or leave it. You have things that you do that might be different to other people or your interests are different. That's all right. At the end of the day, we're all different people and we still get along. We have some universal experience or some shared hobby that you can relate to on. 00;49;17;14 - 00;49;43;18 Courtney Is there anything that you feel like you want to share just about your brother or about yourself? Let me just say to like I feel like your mom modeled inclusion and acceptance and like open mindedness like so well that it reflects so much. And you so just kudos to her because she just I don't know, like, like you were saying, there's no book on how to do this. 00;49;43;27 - 00;49;57;08 Courtney And somehow she did it all perfectly. It seems like somehow she did a really good job. So kudos to her. But yeah, like I'm just wondering if there's anything that you would, you know, would like to say or would like listeners to know about your story or your brother. 00;49;58;12 - 00;50;22;18 Allie I try to have a very positive viewpoint, you know, try to see the good and the bad. I very highly of my childhood and, you know, growing up because I did love it. I had great experiences and I feel very fortunate for, you know, the memories have and having them the parents that I have and having that open mindedness and being honest and communicating. 00;50;23;07 - 00;50;53;01 Allie But I don't want people to think that I there weren't days I didn't struggle or I didn't have feelings of, you know, I'm frustrated. I don't feel heard in this situation or I'm just struggling. I need I need a moment to myself. I think that's just normal to have. You know, I still have them even now. Like, sometimes I get frustrated when I've told him, you know, this is what to expect. 00;50;53;13 - 00;51;15;03 Allie Make sure you're doing this. And like he's like, oh, yeah, yeah. And then he messes up or, you know, he misses something. I'm like, I told you what to expect. So I don't want people to think like I have rose colored glasses on. I did. I do struggle sometimes with it, but I don't hold a place of resentment for him. 00;51;15;03 - 00;51;37;09 Allie It's just making sure that I'm checking myself and how I feel, but also taking into account how my mom might feel and my brother. There are good days and there are bad days, but it's not. I don't think it has to do with the disability. It's just being a human and processing things. 00;51;37;09 - 00;51;59;07 Courtney Nick I was thinking that too, because he's still six years younger, he's still your brother. Like even if you take disability completely out of it, there probably will be times where it's really frustrating, like you're not getting through to each other or there's some kind of miscommunication because that's just like the sibling dynamic. That's like the nature of having a sibling period, but especially having a sibling of the opposite gender and a lot younger than you like. 00;51;59;22 - 00;52;06;23 Courtney But yeah. So yeah. So I could see how obviously, you know, that's just the dynamic. 00;52;06;23 - 00;52;31;08 Allie You mentioned how my mom was, you know, somehow managed to do it all or, you know, manage to have this open mindset. And I think it was from my grandparents as well because that's how she was raised. And so that translated to us. But again, you know, she involved my grandparents in his care. She was educating them, letting them attend things. 00;52;31;19 - 00;52;57;25 Allie I think having my mom, that was her gathering her resources. That was her saying, can I have you as a pillar in my support system? Can I lean on you? If I need it, can I call on you? I think that's something that maybe parents should think about, especially with siblings, is who is your support system? Who are your pillars in that situation? 00;52;58;03 - 00;53;18;16 Allie Are you alone in it? If you're not, who can you depend? Because if you are able to lean on others, then your child will see that. They'll then feel like they can lean on you and they can lean on your pillars as well. Knowing that my grandparents understood you know, they saw things like I mentioned earlier, they would take days with both of us. 00;53;18;16 - 00;53;38;15 Allie They would take me. I would go get to go like go to my favorite restaurant. And then I go to the mall and jump on a trampoline. Like, I got to do things on my own. But they would also go and do that with my brother and you know, that would give my mom a moment to just spend time with me or just have a moment alone. 00;53;38;27 - 00;53;53;17 Allie If your child is struggling with having feelings of resentment and feeling that things aren't fair, take a look at your support system, too, because not only do you need that, but your child needs that as well. 00;53;53;17 - 00;54;12;12 Melina Speaking of that support system, yesterday we talked about the SIB shops and if you thought it was helpful for people to find others who also have a sibling with a disability, I. 00;54;16;23 - 00;54;52;19 Allie Absolutely think that would these sibling workshops will make a world of difference for these kids, even if they don't have the same interests or the same hobbies, they still have that experience of having a sibling with a disability. No one else can understand that. No one else has been in our shoes. It's hard to explain and it's hard to accurately share that because you not only have your own feelings, but you're also, you know, just your your memories, your lived experience. 00;54;53;02 - 00;55;22;09 Allie So I think these kids having a place to talk about it with one another, I think that might even help them if they are struggling with resentment or feeling guilty, I think it will help them process how they feel, even finally say it out loud to someone. As humans, we want to talk about things and we want to process them, even if it's just another kid their age, their playing, or they're just doing an activity. 00;55;22;09 - 00;55;54;13 Allie Sometimes they're just like, Hey, oh, your brother's like that too. Or, Oh, you've experienced that too. It's nice because we seek that and others. We seek a shared experience or a shared interest. That's what makes us human. These workshops will not only open a world to these children, I think it's going to open up a lot for the parents as well, because I think they'll see a difference in their kid of, oh, like, you know, he's talking about it more or he's able to tell me how he feels or how she feels like. 00;55;54;13 - 00;56;29;15 Allie I think it'll open up some communication for them as well. Everybody needs an outlet and this might be that child's outlet to speak on how they're feeling or to share frustrations. I know on the hard days it's hard to see the light at the end of the tunnel. But in that day, or maybe weeks later, you might have an aha moment and you might find that resource, you might find that support system. 00;56;30;14 - 00;56;51;03 Allie I know it seems hard right now, but reach out and, you know, see what works for you. What work doesn't work. And just like these sibling workshops, make sure that you're having that space for not only you to talk about things, but for your children to have that as well. Don't get stuck. Don't get lost in those bad days. 00;56;51;14 - 00;57;01;11 Allie It's a bad day. There's going to be a good one to go along with it. 00;57;01;11 - 00;57;17;00 Melina This podcast is sponsored by the West Virginia Department of Health and Human Resources Office of Maternal Child and Family Health, Children with Special Health Care Needs Program, and the West Virginia Family two Family Health Information Center and produced by the West Virginia University Center for Excellence in Disabilities.