Allison Pyer: Unraveling the Complexities of the Neurotypical-Neurodiverse Connection

In today's podcast, I have the pleasure of interviewing my twin sister, Allison Pyer, whom I'm very close to. Both of us have two children each, and her youngest son and my SKDEAS son were born within two weeks of each other. As you can imagine, we had hoped that they would grow up together, reach their developmental milestones at the same time, and become the best of friends.

However, life didn't unfold exactly as we had envisioned it, and we've never had an opportunity to discuss how our children feel about each other, until now. In this podcast, Ali and I will have an honest and open conversation about our kids and their relationship, and we hope to share some insights and experiences that might resonate with other parents who are navigating similar situations.

Thank you for tuning in, and I hope you enjoy the podcast!

Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.

Transcript

PODCAST INTRODUCTION: This is Emily Beauclair, and you're listening to the Smiles Included podcast: Navigating Through Life with our Rare Disease Superheroes. 

EMILY:  In today's podcast, I have the pleasure of interviewing my twin sister, Allison Pyer, whom I'm very close to. Both of us have two children each, and her youngest son and my SKDEAS son were born within two weeks of each other. As you can imagine, we had hoped that they would grow up together, reach their developmental milestones at the same time, and become the best of friends. However, life didn't unfold exactly as we had envisioned it, and we've never had an opportunity to discuss how our children feel about each other until now. In this podcast, Ally and I will have an honest and open conversation about our kids and their relationship, and we hope to share some insights and experiences that might resonate with other parents who are navigating similar situations. Thank you for tuning in, and I hope you enjoy the podcast. 

So first of all, thank you, thank you for agreeing to do this, and I'm going to kick it off the way that I always do. Please tell us a little bit about yourself and your family. 

ALLISON:  I am married. I've been married about, going on eight years now to my husband, Matt, and we have two kids.  We have two boys, Jack, who just turned seven, and Owen, who just turned five. And we also have a dog, Daisy, and some fish as well. 

EMILY:  You have a lot of fish. 

ALLISON:  Yeah, we can never forget the fish - they always remind me of that. 

EMILY:  You have a lot of fish that somehow have managed to never die. 

ALLISON:  All carnival fish, all four of them. 

EMILY:  Yeah. Okay, so the rules for today are that we can ask each other anything. 

ALLISON:  Okay. 

EMILY:  And the other person has to answer and not hold it against anybody, but we also have to remember that at some point, Owen or Jack or Joe or Ben or anyone in the family might listen to this.  And so we don't really want to put words in their mouths or say anything that we think they might be upset to hear later on, which I always struggle with Joe. 

ALLISON:  Okay, I can follow those rules. 

EMILY:  Yeah, so now, so I'm going to ask you my first one that I've always wanted to ask. And I don't think I've ever asked you this, but you had Jack, who was two when you gave birth to Owen. And two weeks later, I gave birth to Joe, who's my SKDEAS kid. Did you know before I did that Joe was delayed and there was something going on with him? 
ALLISON:  I would say yes, but I also think you knew. Just people were telling you otherwise. So I think in your gut, you did know before. But people were trying to, like doctors and others were telling you, “no, he's just delayed; he's just delayed.” And so you were trusting those professionals - where I knew. And so I think it was hard because you were long distance at the time. So, I didn't see Joe very often, but when we did see him, and I'd compare him to Owen, you know - they're the same age. And I would see things weren't progressing the way that they should. And we knew, okay, maybe it's low tone. Maybe he's slightly delayed. Maybe he'll catch up. But when I went out there, when I went out to visit you in California, and he was two years old, I knew there's something wrong. This is not just delayed. That there's something more to it. And that's when I spoke to our mom and said something like the doctors are wrong. We've got to do more. They're not doing enough. But it was hard. I didn't know how to really approach it with you, because you were being told otherwise from other people.

EMILY:  And I actually was just recently looking at photos from that trip that I think that you're talking about. And Owen and Joe were in that little ball pit that we had, and Owen is sitting up and throwing balls, and Joe couldn't even sit up. He was lying down. 

ALLISON:  Exactly. And it was heartbreaking; it really was to see him, because I knew that it wasn't just like he's delayed. And there's always the hope like, okay, he'll catch up, he'll catch up. But I knew there was something more to it because Owen was not that advanced. There was something wrong. 

EMILY:  Yeah. And I think Joe was having seizures already by that point. That's also what people were blaming everything on. 

ALLISON:  Just based on that, are you upset that I didn't push it more? 

EMILY:  No. Well, because it is true what people say that I wouldn't have done anything different, because I already had him in all the therapies that I could have him in. Because we wouldn't have been able to do the genetic testing because nobody was letting us do it at that time anyway. So we wouldn't have known that something specific was causing all of his global delays. But I guess I appreciate you not calling it out like I was a bad mom or anything for not trying to find out more about or pushing more because he was so delayed. 

ALLISON:  No, it was more; it was just so frustrating that people were giving you that message when, to me, at one point it just seemed obvious. 

EMILY:  Yeah. So, Owen and Joe are now both five, and you have Jack who’s seven, and I have Ben that just turned three - who I'll say is a three-nager that I did not have to deal with Joe.  So, now that they're older, and they see each other a lot. So I guess we could set that up as well, because we live 10 minutes away from each other now. And honestly, that was because right around that two-year mark where we got one of the birth-to-three reports that really proved that Joe was not going to catch up, like everybody used to say.  It was just showing he kept falling further and further behind, and I freaked out and probably moved back to Connecticut to be closer to you in record pace. 

ALLISON:  Yeah, I can't believe how fast you got here. 

EMILY:  And honestly, it was because I freaked out, and I all I could think about was that I wanted Joe to be closer to Owen and Jack to go through the school system with them so that he would have help and support. But now when I think about that, I was like; that's so unfair. I can't put that pressure on your kids. 

ALLISON:  See, I don't agree with that. We're family. So I don't think it's unfair pressure to be putting on my boys. You're not putting pressure on them. You moved closer so we could all be together. We could provide extra support. And hopefully, yeah, the boys will be together in school. I think now, unfortunately, even though you're in the same town, they won't be in the same elementary school, but they will be together, whether it's sports or other things. And later on in school, they'll be together. And they're family; they're cousins. They should be looking out for each other. And so I don't think it's an unreasonable request, because regardless of where Joe is, because they should be looking out for Ben too. You know, that's what family does. 

EMILY:  Yeah. Yeah. But sometimes I feel like I'm expecting too much of your kids. 

ALLISON:  I don't think you are. And you know, I think we recently had a family vacation together as we went down to our sister's wedding. And all four boys were together for most of the trip. And you know, Jack, my seven-year-old Jack, he enjoyed being the lead and making sure Joe was OK, helping Joe cross the street. Like Joe, don't do that. Like grabbing his hand. He enjoyed it. He did. And you didn't have to ask him to do it. No one had to ask him. He wanted to. 

EMILY:  That's true. And I do. Jack is a special breed. And I do wonder if all kids are like him, because he he's just like the sweetest seven-year-old. I don't know. And I know I'm biased, but he always gives hugs, and he always just cares about how people feel. And so I'm hoping that that's normal, like with other kids as well. 

ALLISON:  I think it is. So Jack is sensitive. He is a very sensitive boy, but I do think that is normal these days. I think kids are brought up a little bit differently. I think kindness is taught now. So, taught might not be the right word, but they talk about it in school and how to be kind and how to treat people. And I don't remember that growing up when, you know, we were in school - talk about kindness. So, it's something that gets ingrained in them. And yes, I think a lot of it's also just natural behavior. But I see it with his friends, too. Like he has certain friends that are also, you know, very kind and sensitive. And I think I do have hope when Joe's in school is that he will have kind friends that will open up with him. 

EMILY:  I hope so, too. And we did recently get to see him at a school event, and I did see a lot of it was mostly the girls, though.  The girls love Joe. They love their Jojo. But they're so young now. So I do worry when they're older. So I mean, do you think that Jack and Owen, and this is actually a question that somebody asked through Facebook as well. Like, do you think that by having a cousin like Joe that they are becoming sort of more empathetic and will actually be advocates for Joe and kids like Joe? 

ALLISON:  I think I saw that question, and I think they will. Not yet. So I think right now, we don't talk a lot about Joe's differences, so I don't think they fully understand. And I know we'll get into that a little bit later too in the podcast. But I think for the most part, when they get older, I do believe they will be his advocate. They will be kind to others because they know I have a cousin who's also a little bit different and might act a little bit different in social situations. I do believe that. Right now, that's not the case. So I think they don't fully understand that he's a little different. And so if others might be behaving differently, I don't think they fully grasp it. 

EMILY:  So that's a good segue. How do you explain Joe's condition to Jack and Owen? 

ALLISON:  So we don't talk about it much. And I don't know if it's the right approach. We just don't know with Joe. We don't know where he's going to be in a year from now. If you don't know, but he does behave differently. So Jack is seven, he's a little bit older and knowing this podcast was coming up, not having talked much about Joe's differences, I did approach him about it and ask him, how do you feel about Joe? Do you notice that he acts a little bit differently? And Jack said, “yes, yes, I do. I know he's different. I know he behaves differently. He doesn't talk. And that's a big thing that they notice is he doesn't talk.” And so we talk, we don't know if he ever will. We're really hoping he will, but he might communicate differently. And Jack talked about the book. Oh, is that why he uses the book? And yes, that's why he uses the book. That's why he points in. That's how he's learning how to communicate with you. How do you feel about that? And he's like, “oh, that's fine.” I think it's still harder for him to fully understand what it means and that it might be harder growing up. Owen, it's a much tougher conversation because I think Joe really, I think because they're the same age; Joe loves Owen. And when you see them get together, Joe immediately gravitates to him. But Joe, to get his attention, a lot of times pushes. He pushes him; he'll follow him. And sometimes like accidentally hurt him, not meaning to, but does that. And so Owen has a very different experience. Owen asks, like, why does he do that? Like why does he keep hitting me? Why is he following me? 

EMILY:  He’s knocking down Owen's toys. Exactly. I've noticed that. 

ALLISON:  Yeah. Why is he throwing that toy at me? And so for him, we do have a very different conversation because that does come up a lot. We just talk about how Joe has trouble communicating. And, you know, this is how he communicates. He really, really loves you. He wants your attention. He can't call your name. So he's, you know, reaching for you, and he wants to play with you. But like, I hate to say it, but, you know, sometimes it can be annoying. And just like a little brother can be annoying. Like that's kind of how it can be. I think as they get a little bit older, Owen will be more sensitive to it and more understanding than he is now. 

EMILY:  You know, I struggle explaining Joe's diagnosis to adults even. So explaining it to a kid is tough. And, you know, the best way that I normally do it when I'm when I'm talking to mostly adults, I've never actually really had to explain it to a kid is more that I'm just like, Joe just goes at his own pace, and that's a bit slower than everybody else. So it takes him a little longer to understand things. And so that's why we need to be patient. And that's why I had to remind myself to be patient. But it's like - it's Joe's pace. 

ALLISON:  Yeah, it is. And I think, yeah, for us, the talking, well, the lack of talking, I think is what stands out the most with my two kids noticing. And that's where the questions come is - why doesn't he talk? A question for you, is it okay? Then I'm saying, well, Joe's different. He communicates differently. Like, is that okay? 

EMILY:  Yeah, because, yes, because, and I'm saying things that again, might be more from me and controversial, because I don't mind saying that Joe has special needs, and some other parents get very upset by that, but just by that term. But I'm like, he's special, and he has different needs. So, you know, I don't mind saying that, and he is a little bit different, and, you know, different is fun, and all kids are different - like everybody's different in their own way. And honestly, I know a lot of parents with kids with SKDEAS are going through much harder times than me, because right now I would say Joe is not having seizures. So he's currently very healthy. He's getting most of his services through the school, and he is the happiest child in the world. So sometimes I feel like raising, and I have a three-nager at home that is horrific. So sometimes I feel like raising a special needs kid is not that much harder than what you have to deal with.  You know, we all have our own struggles. 

ALLISON:  Oh, see, I'm interrupting you because I completely disagree. Because I just don't think you know; because Joe is really hard. He is very hard. Like I think about it all the time. I think about it when school’s canceled for a snow day, and I can have both of my kids up here. I can throw the iPad at them. I can give them a bunch of Lego bricks to play with. I can give them the PlayStation, and they're fine. I can leave them for hours, and they're fine. We can get through the day where Joe needs constant attention. You can't take your eyes off of him. It can be exhausting. Even when we babysit, it can be exhausting. So I know this is what you're used to, and that's the life that he's your oldest, so that's just kind of what you have learned. But I look at it as he is. He's hard. He's really hard. 

EMILY:  Yeah. I mean, child care is. Yeah. One thing I'm going to take that off the table, because that is the worst. Child's care for somebody like Joe, who I still can't get potty trained. But then I compare. But then I compare. I compare him to Ben, where I'm like constantly nervous that Ben's about to like poop in public. And I don't have to worry about that with Joe. 

ALLISON:  Well, that's because he just got potty-trained.  That will go away. 

EMILY:  I know. But I'm trying to think of an example, because one of the things with Joe is that he's just so happy and things. He's such a chill child. Like everything rolls off his back. He's just very happy. I get more upset on Joe's behalf about things, I would say, because I know how hard it is for him. And that's really what I would say is hard. And maybe that's why I'm saying that it's not so hard growing up or raising Joe, because I think it's a thousand times harder for him, and all the struggles that he has to go through that I wish I could take away. But it's like, like Owen, for instance, I'm just thinking of a totally random example where Jack was opening up his birthday gifts, and Owen's just started to cry because he didn't get a gift because it wasn't his birthday. And Joe's just running around the room with a balloon and was entertained by the balloon. So it's stuff like that where we don't have, I mean, we do have meltdowns with Joe, but I just feel like he's easier in some parts where I don't have to worry about him getting upset about things that other kids have to deal with. 

ALLISON:  Yeah, but then I think of a birthday party. Like we'll go to a birthday party for Owen, five, it could be at a jumpy place or something. I can let him go, and he can play with his friends where Joe unfortunately can't. Like he doesn't just run around and play with his friends.

EMILY:  I hate birthday parties. I hate them.

ALLISON: I know, and I said it before, but it's so heartbreaking for me. Like I hate to see like what you have to go through. 

EMILY:  See, but that's not, okay. Like that for me, it's like, it's so hard for Joe. But again, like I don't think he cares. We'll use the bouncing birthday party, the bounce house birthday party. I hate those places with a passion. I'm never going back to another birthday party at Bounce Town where all the other kids are able to, you know, climb and run up on things and jump around, and Joe can't do that. But so basically, he was hanging out with me the whole time on the like little kids’ area, but he was having fun. I was the one that was very upset that he wasn't hanging out with his friends, and nobody was coming over to play with him. But he was having a ball. You were in the car when my husband called the other day, because he had to take him to a birthday party that I couldn't go to. And they were saying Joe just kind of like wandered around the whole time. And that just upsets me for Joe. Because like I know he has friends that really like him, but it's the girl’s party that, she had come over to the house once before; she loves Joe. She like doesn't mind the pushing. She said, that's how he gets my attention. And so she loves him, but it was her birthday party so she had a million other people to play with. So she wasn't playing with him. And so he didn't seem to care, but that kind of stuff does upset me. 

ALLISON:  But yeah, that upsets me. And then even just going back to the cousin and sibling relationship too.  Joe will be in a group with some of Owen and Jack's friends. And they also know, I mean, they notice that Joe behaves differently - communicates differently. Because he's five and not speaking. Not speaking. And so they notice, and I'll bring it up here. It upset me, and I didn't even hear it. But I know Trevor, your husband, heard it and mentioned it to me is, you know, someone wants asked Jack – “what's wrong with him?” And Jack said, oh, don't worry about him. He doesn't know anything. And it was not meant in any way to be mean, but those questions are going to come up more and more. And I don't, right now I don't think Jack and Owen know how to answer that. So as they go out, as they'll get older and start going out in public more, for birthday parties or whatever it is with Joe. People are going to be ask, “why is he different or why is he doing that?” And I think I have to educate Jack and Owen on what to say, because when I heard that I felt so, so bad. Because he totally didn't mean anything by it, but he just, he didn't know what to say, and I think I have to educate him. 

EMILY:  Yeah, I know. And that's, and that's on me too. Because I could do a better job of that. Because also what's interesting is that adults never asked me, because I think they're afraid. Well, one, they all just assume that he has autism, and/or they're just afraid to ask. So now that's one of the reasons why I really like that we have a diagnosis, because I'll just throw it out there. When we're just doing stuff and, and he's, you know, running behind, I'll just be like, oh, you know, Joe's just, you know, he's, he's got a rare disease. And I just throw it out there because first of all, I don't actually know if he has autism or not. We have decided that we're finally going to go and actually get him tested because everyone says that he doesn't. But we actually really need services that he would only get if he has it. So we're like, what does it, what does it hurt? But I do get annoyed.

ALLISON:  And I also assume that autism is something people understand. When I try to explain what Joe has, sometimes I have trouble. 

EMILY: Yeah, I know. I feel like we need an elevator pitch like at work that when run into the CEO of your company on the elevator to say what you do. I think we need that to give to Owen and Jack to help them explain it, so that we know it’s a nice way of saying it. Because Jack saying he doesn't know anything was probably more just like he doesn't care. I don't know. I'm sure he wasn't. 

ALLISON:  Yeah, and that’s true - it wasn't meant exactly in any type of ill will. He probably also would say that about his little brother like, yeah, don't worry about him. So probably something like that too. But but they will be asked because kids notice. I mean, they just they notice that he's different. And it will become more and more prevalent as they get older. You know, we have so much baseball and so much soccer now; it's nonstop, and I'm able to go to the fields, and one kid's playing, the other one is off. One kid's playing the sport, and one kid's off with a bunch of other boys doing something different. If Joe were to join that and go out there, you know, he wouldn't be able to kick the ball around. He wouldn't be able to throw the ball around. And I wonder …

EMILY:  Nor would he want to is the other thing. 

ALLISON: It's true, but he but he wants to be in there. Yes, Joe wants to get in there. He runs around and runs circles around them, and that's fine, I guess. But yeah, I think it's just going to become more and more of like a topic of: OK, can I bring Joe, and here like this is my cousin. Can he just play with us?

EMILY: I don't know. I mean, do you think that they would ever think of Joe as kind of the way that they might think of a friend rather than, you know, their cousin who's a little different? 

ALLISON: It's a tough question, because I think about it with how my kids behave around their other cousins on like the other side of the family or even Ben, like Joe with Joe's brother.  They're able to go immediately start playing with them and laughing and giggling. And even their other cousins live pretty far away in Virginia, but when they see each other, it's just off and playing. Where I've noticed when, we're so close - we see each other all the time.  When we come over to your house, they bypass him; they'll run in - and sometimes say hi to Joe, don't forget to say hi to Joe. And they run in, and I think now they actually do run to Ben sometimes too now because Ben can play with them. I hate to say it, but he can play with them. 

EMILY:  Well, and he interacts with them. 

ALLISON:  He does he interacts with them so they see him and say, Oh, great - are we having a sleepover with Ben?  Like, what are we doing with Ben? Because, yes, they can interact. And I think about with, you know, their best friends, they immediately - as soon as they see each other - it's big hugs. It's like, even if they just saw each other the day before, it's still big hugs and like, let's go off and play. They don't have that relationship with Joe because they don't get that, that interaction back, I guess. Or so they'll go to the one like Ben or someone else who will give them that - Oh, we're so happy. I'm so happy to see you. And I'll give you a hug and like, let's go play. 

EMILY:  Yeah. Yeah. And it's, I've noticed the relationship is very different with Ben. And, even Ben now, for instance, is like, I want to play video games. And so it's like the other day when they were over at our house. It was Ben, Jack and Owen sitting on the couch playing video games. And Joe wants nothing to do with it, but didn't care. But I kept trying to get him to be more, you know, playful with them. And it's just, it's tough. It's like, you have to find an activity that will keep Joe's attention for more than two seconds that a five and a seven-year-old want to play, want to do also. And that's why AAC is so important to me. So that, we can find ways for Joe to communicate better with the world and with kids his own age. And so he uses the pod book now, which, you know, it makes him stand out a bit, and eventually it will transition to an iPad. But, you know, I've noticed that Jack will interact a bit with the book with Joe, which is good. Because I think that I always like when you see Joe's friends looking at how Joe is trying to communicate with the world. And, you know, point to things that they think that he's trying to say or that, or that maybe they want, because I think that normalizes things a bit as well, and makes Joe feel a little bit more comfortable. 

ALLISON: Yeah, I would agree with that. Because I think Jack understands what Joe's trying to do with the book. And so I think Jack finds it kind of interesting - and like, can I talk to you this way or even - it can be a little fun. Like, I'm going to point to this and that and when you have the iPad, I can get the iPad to talk and say a sentence. I think he gets it more, and he understands. We were talking about that. Like, that's why he went last time we spoke about it - that's why he has the book and that's why he's trying to communicate. Jack will learn that book. If it means that's how he's going to communicate with his cousin, I'm confident Jack would learn that. I'm confident that if it means we have to learn American Sign Language, he'll learn that. Owen, when he gets a little older, will also learn what he has to learn in order to communicate with Joe. It's not anything that I would have to force them to do. It's not anything that I would probably even have to ask them to do. They will want to communicate with him, and they will find the best way to do that. If it's learning something slightly different, I'm very confident that they will do that so that they can communicate with Joe. 

EMILY:  Yeah. I mean, the good news is our goal is that—I mean, one, that Joe speaks, but the other one is that he does shift over to the iPad, which kind of speaks for him. He obviously understands what people are saying, so he can actually have a conversation with somebody his own age – which would be lovely . I think I've said this a million times. I just want to know what's in Joe's head. 

ALLISON:  We all want to know. We just want to know what he's thinking. Yeah. I mean, I don't know if I have said it, but I've seen him grow leaps and bounds in his development recently, faster than he's ever done it before. So, it's exciting to see that. And we're all, I think, very hopeful, but at the same time, I need to prepare that he might not ever speak. I shouldn't be taking that negative route, but it's always in the back of my head of, like, what if he doesn't?

EMILY:  I know, because it is, again, Joe going at his own pace. It's so, slow going. We've been using this book for over a year now, and we still can't have a conversation. He can point to things, and he can request—he can request a lot of things now, and I got very excited the other day when he told me that his toe hurt using the book. Which is things like that that I always feel like: we have a family text, and I just—sometimes I feel really dumb when I'm just celebrating stupid things like that. 

ALLISON:  Well, and I think that family text is an interesting topic, too, because, one, I love it when you share that stuff. And when you send videos, like, even with the foot, like, that he was pointing to his foot, like, it hurt, I shared that with Jack and Ben.  Like, look, look what he was doing, look what he was pointing to; that's so exciting. But I will say when—especially when you were still in California, and things were just not progressing the way they should, I purposely didn't share certain milestones of Owen’s, because I didn't want to make you feel bad. 

EMILY:  I know. And I feel like Mom would tell me, like, oh, he said his first words or things like that. I felt like - she can tell me these things. 

ALLISON:  But I just felt so bad. I didn't want to— I almost felt like I was rubbing it in when I'm like, look, look what he's doing now. Look, he's talking. Look, he's walking. Look, he's running across the room and you're just like, I can't get him to sit up. Yeah. I would—sometimes I felt so bad. So I would just occasionally would share something, but otherwise, yeah, I didn't tell you. 

EMILY:  I can be totally, brutally honest that I am never angry or jealous or sad about Owen's development, and what he's done. And I used to have, I think, when I was going through the grieving process with Joe, I had a lot of anger around the disease, I guess, which I think finally I'm in the acceptance stage and focused on how I can make life better for Joe. And I am always happy to hear about how well Owen is doing. You know, he's a funny little guy. And I love all the Owen stories. And, honestly, Joe benefits from being around other kids. And so that's also why it's really good that he's so close to Owen. So when Owen—the more Owen develops, the better it is for Joe to see. I don't know if he knows that they're the same age, but it's, you know, good for him to see what the kids in his class that are the same age and kids like Owen. You know - how they behave when they're out in public, and how they play with toys, and how they do things, and how they speak even, and how they interact. Because that is why he's making all the progress is because he's watching other kids and learning that way. So I hate that you—and I knew, I knew that was true. And I hate that you felt like you couldn't share that sort of stuff. And, yeah, please -don't feel like I'm ever upset about—because I'm not upset about Joe. So I'll put it that way, too. Like, I'm upset for Joe, I would say, like, like, because I know how hard his life is going to be. But it helps that he's the happiest kid in the world, as I like to always, always point out. But I'm never, never upset to hear about Owen. And, be honest, like, are you ever like, “oh my god, Emily, that's so stupid”. And I'm just like, Joe said, buh, buh, buh, buh. 

ALLISON:  Well, you know, no, definitely not. When he came over once, and we were convinced he said Daisy. We were convinced when he saw our dog that he said Daisy. And for us, it's a huge celebration. Like, he said—I think he said it. Did you hear it? I think we heard it. And, the boys are like, yeah, yeah, he said it. And so, I think we're—yeah, we're going to be celebrating things in a different way when it comes to Joe's milestones. And, yeah, but I can't help but still always feel bad. And I haven't reached the acceptance stage yet. Like, it's still very upsetting. I don't know; I just, I see how hard it is.  Like when we go out in public, I see how hard it is. You've got to make sure you grab him, like he's going to run across the street, where my kids are at a point where they know - crossing the street, you have to look both ways,  because a car can hit you. They know that, and Joe doesn't know that yet. I just hope he gets there. We have every hope in the world. And I think it also goes to whenever we come over, and I see them like running past Joe. I know Joe understands them. Joe sees them, and I feel so bad when the boys run right by him; like, wait a minute, give Joe a hug; say hi to Joe. Because he understands us, and he wants the love and the affection, and I feel like sometimes they don't give him all that. And so that’s stuff that I reinforce now, but I really do believe as they get older, they're going to be very close. But also, again, I’m going to bring up the heartbreaking. What I find heartbreaking is they're going to, when they're older, they're going to say like, Hey, Ben, do you want to go to the movies with me? They're not going to - are they going to ask Joe? Can Joe go to the movies with them? Like it's, it's that kind of thing. Like, Hey, Ben, you want to go hang out? Can they do that with Joe? 

EMILY: I know. And it's stuff like, for instance, Ben did go to the movies with Jack and Owen, and I took Joe to dinner. 

ALLISON:  And I found that so sad. 

EMILY:  But that's one of those things where, and I find it so sad too, but Joe doesn't. And that's the thing. And so that's why I'm just like - at the moment, he doesn't. So it's like, because there was no way he would - he doesn't want to sit through a movie. I wouldn't make him sit through a movie. He would sit down in the seats for like two seconds, being all excited that he's sitting with his cousins. And then he'd be up and refusing to sit there. So it would be more torture for him than anything. But that's going to happen more and more. Like I've always wondered if there's times when we're doing a family event or, I don't know, going anywhere where your boys are just like, do we have to go with Joe? Or do we have to invite Joe? It's like, I don't know. 

ALLISON:  Well, and, and we've hit that point sometimes. So, Jack had his seventh birthday party, and I let Owen invite a friend, a five-year-old friend, because I knew that he could keep up and do what they were doing at this birthday party, and I knew Joe couldn't. So I knew Joe wouldn't be able to keep up and do it. So we didn't invite him. And I felt really bad about it. And I felt like I had to explain - it's kind of like a CrossFit for kids party, and Joe won't be able to keep up. And Ben we knew no way would he be able to do it because it was for older kids. But Owen was able to invite another five-year-old who could keep up with him.  Where we didn't invite Joe, because we knew he couldn't keep up. So it's already happening. Yeah. 

EMILY:  Yeah. I know, and I assumed that in that case too. Because that's happening, but you did not tell me that Owen took a friend. 

ALLISON:  And yeah, exactly. And I didn't want to. And you know, part of me was also like a little embarrassed by it. Like, am I behaving badly by not inviting Joe? But I also knew it would be first really hard on you, because you would see that he couldn't do what the other kids were doing. I mean, it literally was CrossFit for young kids. 

EMILY:  I know, I saw the videos. Like rolling tires and doing that. And following direction. 

ALLISON:  So that's the problem. And following direction, and pairing up in some cases. I knew it was something that Joe couldn't do, but I also felt like embarrassed and felt really bad that I excluded him. I don't want my kids to exclude him from things and was I setting a bad example by doing that? But I also thought I was protecting you and protecting him by not having him there. 

EMILY:  And that's why I said, I hate birthday parties earlier. 

ALLISON:  I feel like that's going to get worse. 

EMILY:  But I would say - talk to me about those sort of things; because I was trying to think, this is another question that came up - how we could better support each other? That's where I struggled. And that's where I was like, it's just talking to each other more. And I know that I need to ask you for help more. 

ALLISON:  Well, and yeah, I mean, you're in a very lucky situation in that you have family 10 minutes down the street from you, and you don't take advantage of us, and you should.  You should be, yeah, let's drop the boys off. I just need a break because I need a break sometimes with my two boys. But where I, where I just find I can say, OK, boys, you can go upstairs. You can play on your own. I'm going to go take a nap for an hour. And I know everything will be just fine. You can't do that. But also, I think it does come down to maybe the communication part of it  - like where I was embarrassed to talk to you about it, because I felt like I was being a terrible aunt - not treating Joe the way I should. And I should have just talked to you about it. 

EMILY:  Yeah. And the reality is that Joe can't participate in everything nor he might not even want to participate in some things. And I think a lot of times I put too much pressure on, I know I put too much pressure on myself to try to have him participate in something, something I'm like a normal activity when he doesn't want to do it. And I shouldn't, shouldn't force it on honestly, either of us. 

ALLISON:  And yeah, that's all totally natural regardless of I always forget what you call the 
 neuro divergent?  No, no, is that it? 

EMILY:  No, that's not it - neuro diverse needs. 

ALLISON:  What do you call Jack and Owen? 

EMILY: Neuro typical. And I hate that. Yeah. Yeah. Neuro typical. Because you don't want to say normal because that's not the word. So it's just like, Yeah. Neuro typical. 

ALLISON: I even have a hard time speaking about it. So I don't know, if I'm saying normal, is that incredibly offensive? 

EMILY:  It is. 

ALLSION:  Versus neuro typical.  So I remember Joe was doing soccer with the boys with Owen, and there was the big group, and you were always trying to get Joe in there.  Joe would run out crying, and we would also have to remind you - look at that kid and look at that kid. He's crying too. His mom is dragging him in; it's normal for boys like these young kids; even Jack at seven years old. I had to drag him to soccer the other day. He's just; I don't want to go. That stuff happens for sure. There was still that level of, as you brought him into the coaches that they had, of having to explain him. And right now – well at the time - it was like, well, he's a little delayed, but now it's different. And it kind of goes back to the conversation we were having earlier. As Jack and Owen bring him out and see, Hey, these are my friends. Like, like, oh, he has special needs. Is that what they're going to say? Like, what are they going to say to try and, and, and introduce him to people? 

EMILY:  Yeah. I mean, I would say one of my biggest struggles right now is running into just random people because Joe is so friendly. And, and first thing - oh, what's your name? I'm like, how long do I wait for them to realize that he can't answer? Because I don't want to answer for him because he has yet to learn in his book, for instance, to say I'm Joe. And even when he's holding it, the people are still not putting two and two together. 

ALLISON:  They won't. 

EMILY:  Yeah. And so I'm just like, oh, he's Joe. And then oh, well, how old are you, Joe? I'm like, oh, get the message. 

ALLISON:  Yeah. I feel like that's only going to get harder as he gets older, because it's almost like, oh, well, he's young, maybe he's not speaking, talking yet, maybe, but then when he's 10 and a much bigger kid, and then they say, “hey, what's your name?” And he's not answering. 

EMILY:  Well, so that's when I'm hoping it's easier because he's using the iPad or the book and AAC. 

ALLISON:  But that's a good point. And I guess I shouldn't even speak like that. I should be very hopeful that he will be communicating, whether he's talking or it's using the book or the iPad, he will be communicating when he's older. 

EMILY:  So, OK, so I think we covered everything without embarrassing any of our children, hopefully. I still don't know about Joe, which is again, a fear I'm always going to have. I think one thing that I'm going to take on the next time I see Owen and Jack is to probably figure out a better way to for them to talk about Joe. 

ALLISON:  Even as we've been talking, and as I was preparing for this and talking to Jack a little bit. I don't talk about it enough with them, and I don't want them to ever think it's a taboo subject. We love Joe. Joe is Joe. Joe will always be somewhat different, but. 

EMILY:  And we celebrate that he's different. So I think that's. Exactly. 

ALLISON:  I think that's the big thing is – we celebrate it. It's OK to talk about it. It's OK to ask questions and not be embarrassed about it. Because I also hope, you know, when they're off in high school together, walking to like chemistry class or whatever it is, I don't want them to be embarrassed in the hallway. I want them to accept him for the way he is. And yeah, if he's using an iPad instead of talking, that's totally fine. My hope and dream for Joe is that he is walking to chemistry class with Owen. You know, he's doing those things that Owen is doing. I don't know if it might be. I suspect it will be different, but that he will be able to do those things. 

EMILY:  Thanks for listening. I hope you found today's discussion helpful in your rare journey. If there are any other topics you want me to discuss, questions you have for some guests, or if you want to be a guest in the show yourself, please reach out to me via the email included in the show description. Please also visit skdeas.org to learn more about Skraban-Deardorff and consider making a donation to help fund research to help our kids. Talk soon.