Siblings Day Special!!

The Odyssey: Parenting. Caregiving. Disability.

Every April 10th our social media feeds are flooded with throwback photos in honor of Siblings Day. It may seem like a stunt to keep us scrolling, but it's much more than that. In fact, there is an ongoing effort to get the United Nations to officially declare it "International Siblings Day." Siblings Day hits differently when a brother or sister has a disability, especially one that comes with medical complexities. The dynamic looks nothing like the stereotypes we've come to know. In some houses, the big brother/sister role might be blurred. In others, a sibling might have to pitch in with caregiving. Try as they may, although there is always more than enough love to go around, it's nearly impossible for parents to distribute their time and attention evenly. That's why we're dedicating this episode to the siblings that we see go above and beyond every day. The young people joining us understand empathy and patience better than most adults. Take a listen, you might learn something. The Odyssey: Parenting. Caregiving. Disability. The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. https://centerforfamilyinvolvementblog.org/family-to-family-network/

TRANSCRIPT

Speaker 1 (00:07):

Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey Podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down Syndrome in 2010. His diagnosis has taken my life on some unexpected and spectacular turns.

(00:36):

This wild ride has brought me here, working with the Center for Family Involvement at VCU'S Partnership for People with Disabilities. This podcast digs deep into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving, and disability is. But we don't sugarcoat it. The challenges are many, most of them because our society has yet to fully accept or understand disability. You know who does seem to get it though? The siblings. That's what I've seen in my years of being a mother and a disability rights advocate. And I see it in my own house with my son's younger brother and sister. In fact, my 10 year old a Emil is the catalyst for the Siblings Day special. A Emil's understanding and empathy of the human condition is greater than most adults. I know

(01:31):

You may be aware of Siblings Day. It's observed in the United States on April 10th. And while a lot of us see it as sort of a social media stunt to post pictures, it's much more than that. Three US presidents have recognized the day, most recently, president Barack Obama in 2016. There is an ongoing effort to get the United Nations to officially declare an international siblings day. Now, when I think of Siblings Day, I think of the guests I have here today, Dean Rigdon, Neela Chatterjee, and a Emil Croyle-Sheire. All of these young people have a sibling, not just with a disability, but also with significant medical needs. I am so excited you're here. Welcome. Uh, I wanna say that I am sharing a mic, and so my son a Emil is a little fidgety, so if you hear a little background noise, that's it. I wanna start with each of you telling us a little bit about yourself, your age, your life, you know, maybe what grade you're in, what you love to do, share kind of your family dynamic for us. Dean, why don't we start with you since you're the oldest.

Speaker 2 (02:38):

Oh boy, I thought you'd say that. Well, I'm Dean. I'm a senior in high school right now. I enjoy, I guess Dungeons and Dragons. I enjoy, um, swimming. I enjoy writing too. I'm a writer, family dynamic. Oh boy. I mean, Penny's awesome. That's my sister. I also have a brother, so they're 14 and 12, both younger than me. I am the oldest. Um, we didn't have Penny until I was about four, so I do actually remember that. Um,

Speaker 1 (03:10):

Dean, can you just tell us, uh, I know Penny, I'm lucky. I wanted to have people here that I knew so I could kind of help with questions, so I know all of these kids well. So Penny is your sister and she has Down Syndrome and some other medical needs. Are you comfortable describing those? I mean, they're no one's business, but if you feel like you wanna give a little background, you can or you don't have to give any

Speaker 2 (03:32):

Yeah, I can. Uh, even just recently there's also been a lot of developments. So she has Down Syndrome, which she's had for, you know, her entire life. That's how that works. And then, uh, she's also had, was diagnosed with Type one diabetes three or four years back, so type one diabetes. Uh, and more recently also diagnosed with, uh, celiac and Alors Danlos, like connective tissue disorder. So a lot of stuff recently that we've been dealing with, so.

Speaker 1 (03:59):

Okay. And I wanna, we're gonna dive a little deeper into that in a bit, but I wanna go next to Neela. So just a refresher. So I wanna know a little bit about you, maybe what grade you're in, what age you are. Uh, if you could tell us about your new pup and your brother. And if you want your mom and dad, it'd be great.

Speaker 3 (04:17):

I'm Neela. I turned 11 about a week ago. I'm in fifth grade. And um, my brother is Oliver. He's 15 and he was born with cerebral palsy. So he uses a wheelchair. He can't walk. He uses an iPad to, um, communicate and talk. And he is chin fed. In, um, August we got a new dog named Rocket. He's a Bernadoodle and he's six months old. And some things I enjoy. I like climbing, I like, um, I like drawing and writing and I like swimming and stuff.

Speaker 1 (05:03):

Uh, next up I'm moving the microphone over to my son, a Emil, a Emil. Do you

Speaker 4 (05:08):

Remember the questions or do you want me to repeat them? Can you repeat them? So Emil, I want you to tell

Speaker 1 (05:12):

Folks how old you are, what grade you're in, the things that you like to do, and then describe, uh, maybe the family dynamic, your

Speaker 4 (05:20):

Brother, your sister, your dog. Uh, my name's am Emil. I'm 10 years old in fourth grade. Uh, my hobbies are swimming, reading, a lot of reading. Uh, my brother Arlo, he was, he was born with Down Syndrome. I, I was born at least two years after him. Arlo is usually dis kind of disgusting. He lick my face unannounced. Uh, it's a lot of random stuff and he repeats movies over and over again. I'm not sure what else to say about Arlo, but

Speaker 1 (06:05):

Can I push back on disgusting? Yeah, because I observe it. So I, I do see Arlo lick your face, but um, I also see you kind of like, have fun with them and laugh about it. So can you tell me more, a little bit about how close you and your brother are?

Speaker 4 (06:20):

Uh, Arlo I, uh, are basically probably the most close siblings. My sister hates me and Arlo, she hates her guts. But, uh, me and Arlo have a lot more fun. We agree on more stuff and because I, I don't know what to say, either he actually has guts or it's because he doesn't really understand movies that well. I get to watch a lot of horror movies and he laughs at me when I get scared. So it's, it's fun with him around with him.

Speaker 1 (07:04):

I'll just add to that. So Arlo has Down syndrome, but he also has, um, he's immunocompromised, so he has to have infusions at home to boost his, uh, antibodies. He has hearing aids, he has glasses. We see lots of specialists. It requires a lot of travel in a lot of patience from a meal. And in defense of the younger sister Maya, who's not here, Maya is eight and they are, yeah, they don't really take any prisoners, um, and do not put up with much. And uh, it's an interesting dynamic here. I wanna move forward Now, you know, Dean, you touched on something a moment ago and I'm really curious, you know, with you being the oldest in your family and you being four when Penny was born, can you remember how things changed? Can you remember the feeling in the house when, when that was all happening?

Speaker 2 (07:55):

Yeah, actually I can, she was born like four days before my birthday, so she's the 23rd and I'm the 27th. And so we're right. So I remember walking into the kitchen on like the 23rd and it was our friend from across the street that was there. And I, I remembered that feeling of like, why are you here in the morning? Like, my dad's always here making like pancakes or something. And so he was there and he was like, I get a glass of water. And I was like, wait, what are you doing? And so she was back in the hospital with like jaundice for my birthday. So, uh, yeah, she's been in the hospital a couple times on my birthday actually, which she's been back with jaundice. Um, and what's the lung thing? Um,

Speaker 1 (08:37):

Pneumonia.

Speaker 2 (08:38):

Pneumonia, yeah, pneumonia. So that was uh, kind of scary, but yeah, I do remember that. Yeah.

Speaker 1 (08:45):

And Dean, what's it been like being the oldest brother? Because your brother Toby, you said it so it's like you're each two years apart. What's it like in that dynamic? Do you feel like you're more responsible? Do you feel like you've lost any of your childhood because of the dynamics? I mean, I want you to be really honest here.

Speaker 2 (09:05):

I think definitely I'm the more responsible one for sure. I don't mind. Um, I kinda like it. It's uh, we still have fun. I still get to enjoy being, you know, a kid. I'm never gonna lose that for sure. But like, I guess me and Toby have always kind of had a, you know, we're the brothers kind of dynamic duo thing and Penny's always had different interests than us, so we certainly made her more. We, we've, she's been, she's done a lot of things that have been modeled after us, I guess.

Speaker 1 (09:38):

That's really cool. Nea, I'm gonna move on to you and I'm gonna ask this question. I, I wanna say like, I have the perspective of a parent I see in my own house with a meal and Maya like sometimes the expectations that I have to put on them, like the responsibilities because of their older brother's needs are a lot for a younger sibling. And so Mila, do you feel like you have to be put on the back burner when, when your brother's needs are many? Can you talk about that and how that feels and, and what you experience?

Speaker 3 (10:09):

Yeah. Um, I don't know. My brother needs like, so much like, um, he like, um, he's like a lot to take care of. He's so much work and my parents have to be like with him all the time. So that's kind of hard. Like I don't get a lot of time with them and like, I don't know. Yeah, like I feel like a lot of this stuff is about oie.

Speaker 1 (10:39):

Mm. Thank you Mila. I know that's a hard question. Um, and I can say as a parent that it's hard for us because we know that it's often not really fair. The amount of attention we have to give to one sibling as opposed to the other. And we wish it could be different. We really do. Mila, tell me if there's one thing in this world that you could change, if you could wave a magic wand, what would you change to make your life easier, your brother's life easier, your family's life? Easier.

Speaker 3 (11:10):

I would wish it was like, um, easier for him to actually do stuff with other kids cause um, and like get more like help with nurses and stuff cuz we don't have a lot of those and that's kind of hard cuz my parents have to do so much.

Speaker 1 (11:28):

Yeah, the nursing shortage and the medical staff shortage and that is a constant struggle and it's been made worse from the pandemic Dean, I know, you know, your sister's needs are many and I know because I've been with you that you've had to help monitor her blood sugar and do things. How does that feel for you? Is that a level of stress for you or do you just kind of go with the flow? What's that been like?

Speaker 2 (11:51):

I always go with the flow. That's kind of my personality. So I mean I, I definitely help Penny a lot. Like it's, it used to be like when she first got diabetes it would be hard for them to leave the house at all like ever. And so I definitely had to learn how to take care of her diabetes and how to, you know, take care of a lot of the issues that she has so that they could, you know, leave and go get groceries while my dad works or something like that. So now my mom feels a lot more free to go to meetings. Uh, there's a lot of stuff that, you know, she'll be able to leave me alone with Penny for sure now, but every time there's kind of a new diagnosis, there's a little bit of a period of learning.

Speaker 1 (12:30):

Absolutely. You know, Emil, I'm not even sure you remember a lot of the stuff with your brother. I'm gonna bring the mic back down since we're sharing, but I remember a, uh, a Christmas where Arlo had pneumonia and he was hospitalized because of his asthma and issues. Right. How do you feel Arlo's health issues impact your life?

Speaker 4 (12:52):

Honestly, it's hard. I feel like I've lost a lot of time because of Arlo. I've been, honestly, almost every month I have to go on this. I have to drive with my mom and Arlo and Maya and dad. My dad, uh, two hospitals in Boston, Syracuse we're basically all over the place. I mean, I enjoy being with Arlo and his personality because he has all his disabilities. His personality is different from a lot of people.

Speaker 1 (13:39):

Emil, you bring up something that I wanna ask actually. You know, you're talking about other people and being different. How different does your life feel Amil than those of your friends? Do you feel like your friends have a very different life because their siblings don't have a disability? Can you talk about what it feels like when you go to other kids' houses?

Speaker 4 (14:02):

It feels kind of weird to go to my friend's houses, uh, and hang out. But the reason is I go in there, they each, I mean everyone's unique. Every family is unique because of Arlo having a disability and world down syndrome day is so close. My teacher starts talking about it. And one of my friends when I didn't raise my hand and we were talking about down down syndrome, he told me to raise my hand and I don't, I don't blame him. I would've said that to him If his brother or sister, if he had a sister at a disability, I'd tell him to raise his hand too. But here's the thing, I feel, I feel kind of weird when people look at me in my school and think he probably knows everything about Down syndrome. I don't know everything and people kind of expect me to.

Speaker 1 (15:00):

That's interesting. Like you don't wanna be the expert on your brother's disability. Yeah. Is that what I'm hearing? I'm not a doctor. You're not a doctor. I mean, Mila, do you get that from people sometimes? Can you talk a little bit about how that feels?

Speaker 3 (15:14):

I don't get that a lot. Um, but sometimes I do. Just like Emil said, when people are like talking about my brother, they're like, oh, hey look, she has a brother with a big disability. Let's ask her about that. She probably knows all about that.

Speaker 1 (15:31):

That's interesting because there's uh, a very powerful expression in the disability community for people with disabilities, which is nothing about us without us because a lot of times people with disabilities are left out of the conversation. And I think what's interesting hearing from you and Dean, I can't wait to hear what you have to say as well, is that maybe as parents and then also teachers, the adults in your life, rather than asking your sibling or finding a way to communicate with your sibling who has difficulty communicating in a traditional way, they turn to you. I mean, what is, is that what you kind of get Neela?

Speaker 3 (16:09):

Yeah, sometimes.

Speaker 1 (16:11):

And is that frustrating?

Speaker 3 (16:13):

Yeah, , it's

Speaker 1 (16:16):

Dean, what's been your experience with all these things?

Speaker 2 (16:18):

Uh, well I know for you guys it's a little bit your, your siblings are older than you. So I, there's no like, I'm the first one in the grade to meet all the teachers. So they don't really, they don't have a previous experience even with, um, even with Toby. Like teachers will call him my name instead of, instead of Toby, they'll be like, oh, it's Dean. And then they'll realize that I'm in the high school already and Toby was in middle school. And so I think a lot of that is just like, it's your older sibling and they've been through that already. Like they've been through the grade, they know the teacher or they know or the grade, the teachers in the grade know them and then you kind of get a little bit of, oh, they must know a lot about this or they have some kind of, you're not a blank slate essentially.

Speaker 1 (17:03):

I feel like there's a little bit of pain with Mila and a Emil and I get that and I'm really glad you two are opening up and I wanna hear, I don't wanna jump away from that and jump away from things that are uncomfortable. So I wanna, I wanna just see if there's anything you wanna add about your experience that maybe I'm not touching on. Uh, and am Emil, I'm your mom so this might be uncomfortable, but what do you think your biggest frustrations are? Either in general or with your parents

Speaker 4 (17:31):

In general? Arlo actually only has, I'd say two best friends. And it feels kind of sad to me how he has to deal with some people when they exit the middle school. They look at him funny. Like I, I don't think my mom notices it, but uh, I definitely see people looking at Arlo. It, it makes me feel bad for him and I wish I could just change that. Like people would look at him with smiles and ask to be his friend. But I mean that's how our world is. But anyways,

Speaker 1 (18:16):

Emil, I'm glad you pointed that out because I see that every day and it breaks my heart and I've seen it for years because you know, all of the siblings we're talking about today have visible disabilities. And so I'm sure every single one of us has experienced those stares. Not of love, but of like curiosity but sometimes of like not coming from a nice place. You know. Dean, you're nodding. Can you share some of what you've experienced?

Speaker 2 (18:44):

Eighth grade girls are mean dude, eighth grade girls are mean. Um, I know it's really hard for Penny to kind of, she's very friendly and very open so I know she has a couple of very good friends. Um, and you know, they're wonderful people and I know they have a lot of fun together. But, um, I think sometimes parents don't hear everything that's kind of said or like, you know, cuz I'm closer to the age of all the people that Penny hangs out with and I know sometimes it's hard for a parent to kind of understand or to to have the kid be doing what they would normally do next to that. My siblings parent, right. Um, I see more, I feel like I see more than maybe my mom or my dad will.

Speaker 1 (19:34):

Dean, what do you mean by that? Like, have someone see like what, what are you seeing?

Speaker 2 (19:39):

Sometimes people think it's funny when Penny gets mad or something and they'll just do like little antagonistic things. Uh, Toby likes antagonizing her so he ends up doing a lot of, you know, he's the, he's a middle child and so , but you know, she, she's used to responding with a ah, don't do that. Um, or something like that. Just, you know, come on Toby. People think it's funny when she gets mad or something and so they'll do antagonistic things that get her in trouble and then it's not really her fault and I just, I don't know. I don't think that's fair.

Speaker 1 (20:12):

No, it's not. And I wonder, I mean do you share things with your parents or do you filter them to like save them from heartache?

Speaker 2 (20:21):

I don't think there's much they can do besides do what they're already doing. Like I think if I was gonna change something in the world as maybe to the previous question, it would just have everybody be educated on how stuff like this works and how disabilities, um, are just, you know, they should be accepted and be normal and you know, be part of your life. And so yeah, I wish everybody would just have a better empathy and understanding of people with disabilities.

Speaker 1 (20:52):

Absolutely. Mila, I mean what sort of things do you see in, in the circles that you're in in fifth grade?

Speaker 3 (20:59):

Sometimes when I'm out with my brother and my parents people or like when my brother's in school, sometimes people treat him, he's like doesn't know anything and stuff and sometimes like they just think he's not smart and he doesn't really have any friends. Cause people just, yeah, I just feel like everyone thinks he's really weird and they don't get it.

Speaker 1 (21:31):

Yeah, it's strange isn't it? And it's hard and I think I'm similar ages to all of your parents, right? So when we went to school, inclusion wasn't a thing. So, um, I say this a lot but I think it really drives home the point. Arla was the first person I ever met with Down Syndrome. And so in some ways I expect the looks from adults and, but I'm always surprised when the kids do it because I hope that their peers have been with them their whole lives. But from what you're saying, even though that's happening and they have known Penny and Oliver and Arlo their whole lives, they're still different. Is that in the eyes of their peers, they're still very different. Is that what you're seeing?

Speaker 3 (22:21):

Yeah, yeah,

Speaker 1 (22:23):

Yeah. You know, when we talk about name calling and we talk about diversity and equity and inclusion, I was just speaking to someone else yesterday who is a Chinese American and a woman who talks about all of the discrimination that she has faced in her life and said that none of it has stacked up to the ableism. She sees her daughter who also has Down syndrome face and I, I know in my work I see that as well when we talk about diversity and equity and inclusion, disabilities often not included in that. And so I'm curious and Dean, I'm gonna start with you on this one. When we talk about that work that you see that everyone talks about in school, there's a dis there's a free for all in discrimination still when it comes to disability. Do you see that at school?

Speaker 2 (23:16):

Um, yeah. I mean people really try not to say slurs generally. I mean obviously they should not say slurs. Um, it's derogatory and awful but when it comes to like the R word, people just casually throw it out there. It's a lot more casually used and I feel like it's just because there isn't as much publicity or you know, as much education on the subject. Like when I was in high school, when I was like a freshman, I would hear, especially the seniors, I think a lot of people in my grade, um, are very good about not using the R word. I don't hear it very often. Um, I know my school's smaller and so I know everybody in my grade it's a lot easier to kind of know them all personally. And they all know me pretty well so, you know, I've had conversations with a lot of them about it actually. And I've definitely put a stop to it in my grade. But like when I was a freshman it was hard to, I would not talk to the seniors about them saying it, of course in like the locker room and they're like throwing around horrible slurs and I didn't wanna say anything cuz they're going to, I don't know, gimme a swirly .

Speaker 1 (24:24):

Wait a minute. So I'm, I'm, I'm 45 now. Dean, I don't know if swirly exist. What's a swirly?

Speaker 2 (24:30):

Oh gosh. Oh I wasn't gonna really get a swirly but just like facing the toilet,

Speaker 1 (24:36):

Crush it. Okay, okay. I didn't know that was called a swirly. I mean that happened then, you know, but I don't know if it had a name. Okay, good to know. Thank you for the humor. We need a break for humor. Um, Mila, so I know this is a complex and it was certainly a long-winded question, but you know, as a fifth grader do you see that as well? Do you see like people easily making fun of kids with disabilities but not so much others?

Speaker 3 (25:02):

Yeah. Um, I only went to school with my brother for one year when he was in fifth grade and I was in kindergarten so I never really saw anything during that time. But when I'm like out with him, um, once when we were at the swim club, some kid walked up and asked him why does he look so weird? What's wrong with him? And so like that type of stuff. So that, that happens a lot cause like people never say really bad things but they can say like mean things.

Speaker 1 (25:37):

Do you think people even realize how mean it is?

Speaker 3 (25:40):

Some people do some, I think some are just like asking and others are trying to be me.

Speaker 1 (25:48):

Yeah. Which is unfortunate because we're all on this together, right? Neela, I wanna have a follow up question for you as a fifth grader, what about what you're learning in school about diversity, equity, inclusion? Do you, when you have those lessons, is disability included in that or not much?

Speaker 3 (26:08):

No, not really. It's just like black lives but they've never said anything about disabilities and

Speaker 1 (26:15):

Like And how does that make you feel?

Speaker 3 (26:18):

Like they have things like diversity but like in the pictures they just show different like black and white people and not people and like wheelchairs or with disabilities.

Speaker 1 (26:30):

That's interesting because we talk so much about representation mattering and I feel like if we really wanna make a change, we need to see right, everybody. A Emil you know, I know that you learn about diversity, equity, and inclusion in school. Do you feel like you talk about disability much?

Speaker 4 (26:50):

Uh, basically only one day. One day each year? Uh, it was only starting in third grade and honestly it wa I think it the only reason it happened and the only reason we actually did that was because my mom sent an email. So honestly I'm gonna swear here that it really pisses me off. Basically, if you really want to learn about this, I feel like you're gonna have to learn it out of school. You're gonna have to learn all everything you want to know that you don't learn in school outta school. And I feel like leading up to third grade, we never really talked about disabilities or anything.

Speaker 1 (27:42):

You know, I wanna move on to something. This has been really dark and I wanna move on to some joy. And so we're gonna kind of slowly transition, but I wonder. Um, and again, like I mentioned before, like I know because I was never around anyone with a disability until I was 33 and that is absolutely sad. And then my life changed because of my son in this beautiful way. It was hard because there was such a learning curve, but Arlo brought this love in my life. Arlo made me wanna have more kids and now I have three Arlo expanded my world. I would literally not be talking to you guys today if it weren't for my son. We wouldn't know each other. But we're connected through this thing that no one ever really hopes to have a disability. But it's not a bad thing, it's just part of the human condition. So I wanna ask this question in a positive way that because of your exposure, because your entire life you have been close to someone with a disability and you always will be and because of understanding it more, how do you feel it impacts your daily life? How do you feel like your sibling and your life experience impacts how you move through this world? Dean, let's start with you.

Speaker 2 (29:00):

I feel like I'm a lot kinder, um, just to everyone. It's given me a lot of empathy I think. And I see through, through things that we're learning at school maybe. And when you know the teachers like analyze this, what's going on here? And a lot of kids struggle maybe with, I don't know, what's the dynamic between, you know, these two groups of people. And I think you just get a different perspective and it's a lot easier to see uh, and understand people's differences in communication. Especially like penny communicates in non-verbal ways a lot of the time. Um, sometimes it's, you know, just flopping or doing something to get a response and you kind of have to think about why people are doing what they're doing to, you know, figure out you know, what they want.

Speaker 1 (29:50):

Mila, how's your experience with Oliver kind of shape your worldview?

Speaker 3 (29:55):

I feel like a lot of things that a lot of people take for granted, like being able to scratch your own itch or pull up your blanket. We like really appreciate those things cuz all he can't do any of that. Like, he can't like control anything he does. So I think we really appreciate those little things and having friends, like we can communicate to them and we can like make friends. He can't do that. So I think that's one of those that's positive.

Speaker 1 (30:32):

Emil, how is having Arlo shaped your worldview

Speaker 4 (30:36):

In good ways or bad

Speaker 1 (30:37):

Ways? In good ways?

Speaker 4 (30:39):

I'd say this kind of both, but we have to walk to pick Arlo out from school because he can't really, I mean he knows the pathway to to home, but we don't know if he's just gonna run a different direction. The good thing about that is every time I go to see Arlo, every time I go to pick up Arlo, he runs up to me and gives me the biggest hug and smile before my mom

Speaker 1 (31:09):

Am Emil can I ask a follow up question? Yeah, sure. Don't apologize and I'm sorry for cutting you off. Um, no worries. I, because I get to see you every day. There's this really beautiful dynamic between you and your brother where you are able to anticipate his needs and there's also, even though he's the big brother, I mean Arlo calls you big brother. Does that feel good the way that Arlo looks up to you? Can you, can you describe how it feels to have someone adore you so much?

Speaker 4 (31:39):

Baby? I'm not, I'm not really sure. I feel it feels kind of weird for my 12 year old brother to tell hi, to call me his little brother, big brother. It feels kind of weird, but it gives me this sense of pride, how Arlo trusts me and how he follows me. It makes me happy.

Speaker 1 (32:05):

I wanna touch on something because I've heard you all say it Dean, you mentioned Penny has friends, but all of you have mentioned, you know, difficulty with friendships and so I wanna ask, you could recommend to your peers how to cultivate a friendship and how important that is because I, as a parent, I say it with my home own son and it breaks my heart and I, I don't know how to make that happen. I keep trying but you all have this different perspective and you have perspective not just as a sibling but as someone who has people your own age who have, you know, different life experiences and disabilities and whatever. What advice would you give for cultivating friendships both to parents trying to do it, but also to your peers who should be having a friendship with whoever?

Speaker 2 (32:54):

I think just in order to cultivate a friendship you have to kind of let some stuff go. Uh, you don't have to hold everything they say against them. Nobody's gonna be perfect. Nobody's gonna be the ideal friend as long as they lift you up and you know, don't drag you down, then that's a good friend. Um, that's all you really need in a friendship. I think.

Speaker 1 (33:16):

Ah, god, a lot of adults need to hear that. Mila. Um, what perspective do you have there?

Speaker 3 (33:23):

Well, like for being friends with Ali, I think they should have, they should learn like, like how he communicates and be patient with him because it takes a long time for him to communicate with his iPad and like when he blinks yes with his eyes and shakes his head now when he says no and they should just like, I feel like one of the most important things is patience cause he can take a long time to um, communicate with other people. So I think that's probably the most important thing.

Speaker 1 (33:59):

Yeah, that's interesting you say that ne I do the same thing with my son for his I e P where I'm like, you gotta give him extra time to answer. You just have to allow for that space. Everyone in your life has to amil. What do you, what do you see from both yourself and your peers? How, how can we cultivate friendships?

Speaker 4 (34:18):

Uh, I agree with both Mila and Dean, but there are some things I would add. I realize that Arlo has this way of communicating. Sometimes she'll just, uh, sometimes he uses sign language, he uses all these different things to communicate and you just have to deal with them. He usually uses this, your middle finger and pointer finger, no ring finger, middle finger and point, uh, ring finger dam, pinky up, uh, index, uh,

Speaker 1 (34:57):

It's, it's a lot of people know this. Sign a Emil. I'm gonna interrupt and interject to make it easier. It's the American sign language sign for I love you.

Speaker 4 (35:04):

So it's basically you're doing loser, which is just this, and then you just add your pinky up.

Speaker 1 (35:12):

Yeah,

Speaker 4 (35:14):

He usually does that. And then he doesn't really use sign language that much, but it really depends on which, who, who you're talking about. That's how I, that's how I create a friendship with Arlo Mila. That's probably how you create a friendship with uh, Ali and Dean. That's probably how you create a friendship with Penny. You always have different ways because no one's exactly the same.

Speaker 1 (35:42):

Oh, well there's that spot on too, right? No one is the same. Everyone's different. I'm curious too, since you all are in school, and this is something that parents struggle with and a lot of parents are gonna be listening to this. Okay. Is that our, your siblings? My kids, our kids, they need assistance in school and um, a lot of times that comes with an adult person with them. I think in Oliver's case it's a nurse, it's a teaching assistant. It can be one-to-one. I'm curious how you all feel, not so much as siblings, but as kids that are in school, do you think that creates a barrier to cultivating those friendships? Because there's always an adult around this kid. So I'm, I'm gonna make this a two-parter because the one that adult I think creates a barrier for friendships. But also do you think that adult helps stop bullying? Is it a double edge sword where it's necessary or not necessary? I think this is something that adults struggle with and I would really love the opinion of you all as students. Dean, we're gonna start with you again.

Speaker 2 (36:48):

I am not in school with Penny in the same, the same building, but I know if the adult that is with her is like good at what they do and knows Penny really well, it's a lot easier to, um, you have to find the right person. I think it's not, it's not a clear answer, but like I'm sure the adult can be a barrier for her. I know Penny really likes a lot of her, you know, aids or teacher assistance or something like that. She, she really likes all those people. But sometimes she'll be like, yeah, I'm gonna invite my friend Ms. Emerson over and you know, it's hard cuz she kind of equates that with, you know, Ms. Emerson is my friend, but she is, but it's hard to explain that the person who's with you all day isn't exactly like, it's more of a professional relationship, uh, kind of side of relationships. So I think there's a little bit of confusion in there too, as well as with uh, you know, maybe a block to talking with other kids.

Speaker 1 (37:48):

That makes sense. And I know there's a lot of disability rights advocates. They really stress your staff is not your friend. That's not, and that's, it's important to get those friendships happening elsewhere, but it's, it's a really tough thing to do. Mila, I know you and Oliver are very far apart in school, so I, I mean, but you also have other students in your school who need support. I'm curious what you see with Oliver, but what do you also see in your own school with students who need that extra support?

Speaker 3 (38:17):

In my own school, there's not that many people in my grade with a disability or like in the school that I see a lot. Okay. There's um, one or two, I think they have like autism so it's not as bad, but it's still a big disability and they don't need an adult with them all the time. Like during, like when we have like PE or art or stuff, they can be on their own but sometimes like for class they need an adult with them and they need like special classes. So I think that sometimes can get in the way of us trying to like talk to him or make friends with him and with my brother, um, as like you said, I'm not in school with him, he's in 10th grade , so I don't know that much about him, but having a nurse at home with us, I think like having her around, it's sometimes hard to be close to him cuz she's just always there. I'm like, yeah,

Speaker 1 (39:26):

Yeah, it's, I I know that's weird. We've had that sort of presence all the time and they kind of become part of the family, but they're kind of not and it can be really uncomfortable, can't it?

Speaker 3 (39:36):

Yeah.

Speaker 1 (39:37):

Yeah.

Speaker 3 (39:39):

So

Speaker 1 (39:40):

A Emil talked about earlier needing to travel a lot and needing to do things because of siblings. And I know that our lives are different because of that, but also I know that there are things that are better because of it. So even though the long drives and the car stink because Arlo has to go to Boston, uh, our family gets to go to Boston and so even though it's for doctor's appointments, we make a vacation out of it and we find a hotel with a swimming pool and we went to Salem and saw the witch stuff and we see the ocean and we make the best of these things because of him. And I know in our family, because Arlo's the oldest, but he has so many developmental delays, it lends to him wanting to watch movies with his eight year old sister that they both like and being able to do things that are younger that most 12 year olds would be like, no, Arlo's cool with. So there's some silver linings there in our family and when I get toil he might disagree, but I'm curious what silver linings you have from the tough stuff.

Speaker 2 (40:44):

I think Silver linings for sure. Like we went to uh, New Zealand with the, our whole family three ish years ago, right before the pandemic and Penny doesn't like to walk a lot. Um, so she would just flop and when she flops we would always kind of take a second to look around and I think we got a much better picture of where we were. And I dunno, it's interesting what you see when you don't just walk right through quickly and you kind of stay there a while and wait for the flop to be over. So just a lot of stuff she does, I think gives me a different perspective on what we're doing at the time.

Speaker 1 (41:24):

That's interesting Dean. And it's probably a little different from you being older because it's the reverse of what we've experienced with Arlo. You've probably had to compromise a lot in your activities. Have you felt that?

Speaker 2 (41:38):

I am, uh, Troy in high school musical? Uh, so when we, when we sing, I am always, I'm always Troy in high school musical. I'm, I play a lot of the Disney princesses too. Uh, I'm an actor, so yeah, I compromise. Um, but it's fun and I make it fun and I have fun anyway, so

Speaker 1 (41:58):

That's nice. Mila, what about you? Are there some silver linings with, uh, Ollie?

Speaker 3 (42:03):

Um, we can't really travel because we can't like get on a plane or go on a really long car ride. That's all hard. But when my parents have to take all the way down to Rochester, Syracuse for an appointment, I usually get to end up, um, spending more time like at a friend's house or with my aunt or cousins that's like one silver lining. I get to spend more time with like other family or friends when my brother's away.

Speaker 1 (42:37):

Oh, that's nice. That's probably a bond you wouldn't normally have. That's awesome. Emil. What silver linings do you see with your brother?

Speaker 4 (42:46):

Silver Linings with Arlo? Is that basically the reverse from a Neela is we get to travel, we get to travel a lot and sure we have a lot of arguments, but usually when we get there we have a lot of fun. We get to visit new places and I can't remember if it was a business trip with my dad or it was a doctor's appointment for my brother, but we went to New York one time and it was so fun. Uh, we got to go into the Harry Potter shop. There were, it was, it's fun with Arlo around, but another silver lining is, and I think I've already mentioned this, but Arlo probably less of a fear than most 12 year olds, honestly. I mean, because of Arlo getting into more scary stuff, we, we've started watching Ray Dar war movies, uh, well actually only one I believe, but Arlo doesn't really care, but he loves, there are some certain songs, I don't know if you can hear it right now, but he is listening to Thriller Michael Jackson thriller and those are one of the songs he basically repeats and he plays super loud.

(44:12):

It's very annoying, but Arlo usually listens if he wants to, and I agree with him. He usually, uh, turns it down a little. Me and Arlo have this arrangement and here's another silver lining where he gets listen to music. I get to play video games, games and I have a, probably a longer curfew than most, most kids my age, uh, especially on weekends. I've pulled in all nighter at least three times in my life, which is honestly a lot for me. But, uh, Arlo agrees with a lot of stuff. Arlo has a lot of silver linings and it would take me at least an hour to name them.

Speaker 1 (44:54):

The three of you just keep expressing so much love to your sibling and it just, it brings joy to my heart and it's making me wanna ask a question that a lot of parents have, but they're afraid to ask. And honestly, it was a question I had after my son was born, which is, should I have another child? I know that this beautiful baby I have has a lot of needs. And someone told my husband and I early on like how wonderful it was to see big families surrounding this child that had a disability. And that brought me a lot of comfort. And I can say hands down, the best thing I ever did was have a meal here and my daughter and Arlo, I wouldn't change anything. But parents have this question and I mean, what would you as a sibling say for parents who are wondering what is your life like? What would you like to share about that? If they were to ask you your opinion on it, what would you say? At the same time, you do not have to answer this question. Absolutely not. It is a really tough question, but you all are wise and mature beyond your years and that's the only reason I feel like it's okay to ask you. So Dean, being that you're the oldest, it would be wonderful if we could start with you.

Speaker 2 (46:22):

I think my life is better because of Penny really. I mean, I don't know, I feel like I'd be much worse, just not a, as educated and kind as I, as I am. I know it's changed my parents too and the way that they've raised me and that's, that's a huge influence when you're growing up. Yeah, I think, I think I'm a better person cuz of Penny. So if you were going to, if you didn't want to have another kid or you don't think it's gonna be fair to your kid, I think you're gonna raise them better. You wanna make the world better for people with disabilities. Siblings are, I think, the best suited to do that. Even if they're not gonna go into something directly related, they'll do something that's like, they'll keep that in mind when they're doing whatever job they come across. And I think that'll help everything be inclusive and everyone be inclusive.

Speaker 1 (47:18):

Mila, is this something you even wanna answer? Um, if you do, go for it. If not, you can say no,

Speaker 4 (47:25):

I don know.

Speaker 1 (47:28):

It's okay. You can about it. Okay. Uh, Neil, do you remember the question?

Speaker 4 (47:33):

Not exactly. Can you repeat it?

Speaker 1 (47:35):

So if, if there's a parent who has a child with a disability already and is on the fence about whether to have another kid cause they're not sure if it's gonna be fair or, you know, what's their life gonna be like? Here you are, you have two siblings, what, what would you tell that parent looking for advice?

Speaker 4 (47:55):

Uh, I'd tell that parent, honestly, it's up to you, but I feel like I honestly have more privileges than Arlo. I, I get to do a lot because of Arlo and because he's well different from most people. I wanna say, uh, Arlow gets to do a lot. Maya gets to do a lot. I mean, I'd say you should get another kid and you should see, you should see what that child is going to do and how that child is what's gonna happen because it's all up to you.

Speaker 1 (48:38):

So Neil, if I may, I, it sounds like what you're saying is if you don't wanna have another kid, don't if you do, do because it's not that big of a deal. Is that kind of

Speaker 4 (48:48):

Yeah, that's a quick summary.

Speaker 1 (48:50):

Okay. I wanna make sure I don't mince your words. Neela, we're gonna move on to the last question. And you've been so patient, I'm gonna see though first, do you wanna answer that question or no, still? No, that's cool. Uh, the last question, I want it to be happy. Okay. I wanna know what your wishes, hopes, and dreams are for not only your future but for your siblings future.

Speaker 2 (49:14):

Uh, I mean right now I'm, you know, embroiled and finding colleges and stuff, so, uh, I'm looking at kind of what I wanna do, but for Penny, I think the biggest goal is just to have her be independent and have her be able to like, function on her own and not need as much support. Um, being able to just do things for herself and be self-sufficient. I think she would really like that. She always talks about, I dunno, she wants to be a fashion designer, so we'll see how that goes. You know, we always encourage the things that she wants to do. Like, I think, um, my girlfriend's gonna give her sewing lessons and see how that goes. There's just a lot of fun stuff that, you know, we just encourage whatever she thinks is fun and, and hopefully one day she'll be able to do something with that and do it on her own.

Speaker 1 (50:06):

I love it. Neela, are you ready for this one?

Speaker 3 (50:09):

Um, mostly for like Ali's future, um, I hope that he gets more respect and more like help to live a happier life and that like, if he goes to a college, he can do like math and algebra. He really likes doing that stuff. He's really smart and I don't have to like dedicate my whole life to just helping him.

Speaker 1 (50:36):

Mila, do you feel like that might be something that you might have to do?

Speaker 3 (50:41):

I mean, I know I'm gonna have to like help him a lot, but I don't want to do that like my whole life

Speaker 1 (50:51):

Yeah, I understand that and I think that, I think that a lot of kids feel that. Um, and I can't speak for other parents, but I can tell you that I know personally for myself and for so many others, that's not what we want for our, for our children. And I know that in our, in our situation, we are setting up everything we can. So Arlo has his own life and his siblings that's, he is not his sibling's responsibility?

Speaker 3 (51:21):

Yeah, like I was never asked to, but I feel like I'm going to like, I I should, but I don't wanna do that like all the time.

Speaker 1 (51:31):

Yeah, I think that's a real concern for a lot of, a lot of siblings and it's legitimate because when your parents are gone, you know? Yeah, I'm sure that weighs on you. Um, thankfully that's a long way from now. Emil, what about you kiddo wishes, hopes and dreams for your future and your brothers?

Speaker 4 (51:55):

Honestly, for Arlo, I hope that he becomes an, a musician. I'm not sure if he loves, uh, to play the saxophone or not, but I've never really heard, heard him practice, but I feel like that's a wish and hope for him. I believe I googled this one time, but I it's, I think it's one outta five, uh, people with a disability get married, I think, I'm not sure. I don't remember it, but I believe I saw that on Google somewhere. I hope Arlo becomes a famous saxophonist and I don't really have any wishes, hopes and dreams for myself.

Speaker 1 (52:46):

Will I have plenty for you? Dean am Emil Neela, thank you so much and thank you listeners for joining us. We're just getting started and cannot wait to bring you more. Please rate, review and share and tell us what you wanna hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.

Speaker 4 (53:20):

Listen to the next episode, please bye. This time for real.