Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Autism Parenting and Travel: Real Strategies, Inclusion, and Caleb’s Courageous Travels

Transcript

Autism Parenting and Travel: Real Strategies, Inclusion, and Caleb’s Courageous Travels · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: The latest episode of the Inchtones podcast. We are season two. Well on our way through almost half of the season so far. And today I get to bring on a fellow autism mom on the in. In social media that we. How we first got connected. But what I love about the story of Jennifer Wallace and her account, Caleb's Courageous Travels, is that she was someone who I found and went. She does what I do, where we just go and we say, we're not going to let the world's reaction to our children being just who they are affect how we get out and explore and enjoy this beautiful world. Jen, thank you so much for being here today. I can't wait to have everyone hear your story and why it is such a mission of yours to show and model what it's like to get out of the home and to interact with this world with children like ours.
• 0:51
  Speaker B: Great, thank you. I'm so honored to be here.
• 0:53
  Speaker A: Tell me, when did you start saying, we're not gonna let this limit our ability to live outside the walls of our home?
• 1:01
  Speaker B: Yeah, you know, it's funny you say that, because honestly, you know, when I was. When Caleb was born, I was a single mother and I lived in Washington, D.C. and I was in graduate school, so I didn't live near anybody, any family. So we were traveling before. I wouldn't say before he was. Before he was diagnosed with autism, basically. So we kind of started that journey even before that. And I mean, it kind of evolved into then him being diagnosed with autism. And, you know, I kind of was like, well, we're just going to keep going with this in a sense. So it was almost like a. I mean, you know, started before he even we were. The features even kind of came out. But after. I've loved travel. I've always loved travel. And, you know, just the idea of, like, some of the best memories of your life and the things you cherish are when you're traveling with your family. That one family summer vacation. And I remember when we experienced this and I just, you know, my heart was like, I just feel like this is what I want for him too. Growing up, and even in my younger 20s, like, all the experiences I had, I just don't feel like at least I wanted to try. That makes sense. Like, I, you know, I've. I've talked to a lot of families that, you know, in the end say, you know, traveling is not just for us. It's not for us. We've tried it. And I'm like, well, great. That's. I mean, being brave and trying is what, you know, is kind of. Kind of my, My mission is just at least try and see, you know, but if it's something that ends up being fulfilling and serving you, then I want, you know, family.
• 2:25
  Speaker A: I love what you're saying. Just obviously just trying it. There's a lot of discomfort that a lot of families like ours feel in the process. Just trying. You know, I, I was recently flying solo to Florida with the, with the little two. And you know, we're, We're. We're pretty locked and loaded with getting to the airport. Like, it's not. And yet I was faced with a completely dead weight. Sun on the floor, would not go through the, you know, the security machine. And, you know, what I'm realizing in those moments is that even after doing this for over a decade now of just traveling with them, I have to know that those moments are still going to happen. And I think that that's a fear point is that at first those are going to happen a lot. It doesn't mean that they're completely extinguished, though, over time. It's just that it does happen less. You know, Talk to me about how that has evolved with, with you and with Caleb through the years.
• 3:13
  Speaker B: Right. I think a hundred percent. I mean, there's. We don't ever have like a, A, A drama, free trip. I mean, there's always a little something happens here and there. I think basically things. How it's evolved in a sense of me, my reaction is much better. I mean, these kids feed off our anxiety, you know, so it's this idea of just, I'm gonna be prepared, you know, we. As much as you can. And you know, that takes. I mean, hopefully I'm, I'm trying to educate people on how to be prepared, but in the end, practice makes perfect. You just have to keep trying and doing it and you're going to be more prepared the more you do it and the more you realize this is what my child needs, et cetera. And then just trying to be, you know, just my reaction, being better, you know, calm, you know, collected.
• 3:57
  Speaker A: What are some things.
• 3:58
  Speaker B: Don't freak out.
• 3:58
  Speaker A: That you maybe said to Caleb in his younger years that helped. Even just in the preparation phases of getting through the security line, ordering food from a different place at the, at the airport, waiting for mom, you know, you know, as we. As papers are being handed over, like, it's such a. Like you said, it's such a stressful situation for, for everyone. You know, I found that just always talking about things as they're Coming up has been very, very helpful, a hundred percent. What would that look like for. For those of listeners that might not really understand, like, well, what does she mean by talking through it?
• 4:29
  Speaker B: Right? I mean, I even start from the. Even the, like weeks before we have a little calendar, because I feel like a lot of times with these. With our kids, I mean, you do. I think you do this with neurotypical kids too. You just kind of like, oh, I forgot to tell you we're doing this. You know, you kind forget to tell them the plans. But with our kids, you know, they hear it, you know, they're processing it. But I tend. Even if as they get older, especially Caleb is 21 now, and sometimes I forget to be like, oh, by the way, we're, you know, we're doing this, you know, so I try to. I have a calendar that I try to prepare him weeks before we do any kind of travel. He's a part of the packing process. Even if it's just bring up the suitcase. You know, we're getting this together. You see that this is happening. And then, yeah, just kind of talking him through what we're doing as we're going through. All right, baby, we're gonna park at the car right now. We're gonna grab our bags, we're gonna go through security. And then, you know, even the biggest things for Caleb is when is he gonna eat and when is he gonna go to the bathroom? So those things, trying to like, okay, we're gonna get through security and go to the bathroom or and we're gonna get a snack, you know, So I feel like just kind of those kinds of preparations, just making sure he's a part of the plan. And that. That does tend to make him, you know, more calm.
• 5:37
  Speaker A: How have you handled maybe strangers reactions? You know, I. I know that I'm. One of my biggest, like, vigilant points is always like, okay, assessing who's sitting in front of us or so that. That the seat kicking the tray tables coming up and down, the seat buckles always probably in. I've gotten less, but maybe still in a very hyper vigilant mode about, you know, making sure to say hello to those around us. You know, talk to me about how you've grown as a. As a mother and traveling so much, but what that looks like when you're met with maybe someone who is more reaction to you and Caleb.
• 6:17
  Speaker B: Right, Exactly. You know, yeah, we. We do the exact same thing. Try to say hello, you know, almost like talking. I feel like sometimes when I'm talking To him. I'm talking to everybody around us like, okay, you know, we're gonna take off now. And, you know, you know, keep nice hands. And let's, you know, keep our hands busy with our iPad and our fidget toy, right? And try not to use the tray, you know, so I try to do that kind of, kind of thing as well. But, yeah, it is. Sometimes, you know, he loves to open and open, undo the tray table on that chair. He's like, okay, we're just going to.
• 6:50
  Speaker A: Mac is a fan of the seat buckle. Like, I, when he, he just loves the flapping of the seat buckle. And you know what? Like, to be honest, like, for the majority of a flight, you can't really hear it. It's just that whenever it's quiet and the, you know, the circulating air is not on and the flight, you're like, this is pretty incessant, right?
• 7:10
  Speaker B: Then you're like, I think a lot
• 7:12
  Speaker A: of times the fear of travel, from when I hear people ask, like, how do you do it so much? And I hear behind their fear is being so afraid of the world's reaction. Right? And I, I, I know and I love, I really want to hear your story on not maybe the, the sad, negative reactions, but what have been some really great positives so that, I mean, right.
• 7:36
  Speaker B: For every negative reaction I've had, I, I think I've gotten, like, three positives. I mean, I mean, at least I'm people. I, I feel like this, it's becoming more disseminated in our culture of, you know, people with autism. I mean, the diagnosis is becoming, you know, better because we're, you know, in. There's no, there's not as much fear behind just help getting kids help and et cetera. So I feel like there are a lot of people out there that, that have a family member, you know, my niece, my nephew, my, you know, and so I just feel like it's almost like we're just relating to the world better because it's like, you know, and they, and they see us out there and they're hoping that they're in their heart. They're hoping that I hope. I want that for my loved one. I see this woman, and, yeah, it's maybe not going perfect, but, you know, they're doing it and they're, you know, hopefully going on some beautiful trip and having, Making memories. And I'm praying for that for my own, you know, loved ones. But, yeah, I've had, we've had so many experiences, and I will tell and what I try to do the most is just, especially when I get a glare or it's an ugly thing. Just try to remember, like, I mean there's always gonna be people doing that for sure and not having good intentions. But I had, there's a couple times where I've thought someone was glaring and they've come up to me after and been like, I just think you're doing a great job. You're a wonderful person. I love what you do. So then I'm like, well, mine is superimposing my worries and anxieties on, like, am I seeing the glares? Like, am I making that up? You know, so. And I'm not always, I'm not saying we're all, you know, but there are times where I'm trying to like just be like, maybe they're not glaring.
• 9:07
  Speaker A: Maybe that's, maybe there's someone, the podcast who, who did a lot of scientific work on like curiosity and like the mismatch that like we as humans, we are wired to, to look for mismatches. So there's a, and there's a facial like reaction that we then intake because of our experience with children like ours. We're so used to people noticing that we are the mismatch that it becomes also a bias to us that like we're so hyper protective then of being like, I see you, I see you looking. Whereas that might not mean that they're judgmental, it might just mean they're curious and they're trying to figure out. And I think that right. You know, one of the things that I do, and I've shared this before, like I always bring like $5 Starbucks gift cards when we travel on an airplane. I just give them to the row. When I say hello to the in front of us, I say, here, this is from, you know, from us in the row behind you. You know, Mac and Millie both have profound non speaking autism. Sometimes they can or they're unable to control their, their emotions and their bodies. And if they kick your seat, I'm so sorry. I'm trying to do the best I could. And those kind of conversations with the other travelers ends up being beautiful, like you said, and eliciting, oh, I have a niece on the spectrum. Oh, my neighbor's on the spectrum. One thing I wanted to say that even goes beyond that, and I'd love to hear what your thoughts are, is that it's not even just about the understanding of autism from what maybe a fellow passenger has, but just simply parents. You know, I've this past year realized so much more about just everyday other parents who seemingly don't have atypical children like we do, saying, you need any help? You're doing a great job, like just out of the blue. And that's been one of the most beautiful parts of continuing to get out there.
• 10:46
  Speaker B: Right, Exactly. No, I've had, we've had lots of that experiences. I mean, even people, I mean I've had people offer, you know, gentlemen, because I'm, you know, single mom and so take Kate to the bathroom and you know, I mean just these very, yeah. Small acts of kindness that they do. It is beautiful. And I, you know, I wish you could. You know, we tend to focus on the ugly. So, you know, it's hard to like, you know, explain that to people who are afraid. But it does happen and it's, it
• 11:14
  Speaker A: is something that, yeah, at the very beginning, when Caleb was younger really helped. Like what are the supports? Like you were saying, fidgets and his iPad, which, which I know most of us would think of naturally in as an autism mom. But what, what would be, you know, I guess the next level of like preparation. Like what were you preloading? What were you sharing with him about where you were going to next? Were you planning situations that were, were you, were you notifying the airlines? You know, there's so many more programs that have built up since, you know, you're, you've begun your journey, you know, like, so what is it? What did it look like at first and how has that evolved?
• 11:51
  Speaker B: Um, it's funny you said that I, I never even knew up until like last couple years I didn't know about notifying the airlines.
• 11:57
  Speaker A: Well, I love this. Well now, now I love airlines.
• 12:00
  Speaker B: So exciting that this is evolving that.
• 12:02
  Speaker A: And say like intellectual, you know, disability and say that which I think is a phenomenal option to be able to have and you know, pre boarding or boarding last, you know, works for your family.
• 12:13
  Speaker B: Right, Exactly. Which is great. Is awesome. So. But in the beginning, you know, I'm, you know, again, just the verbal, you know, trying to prepare him verbally. You know, I. That sounds maybe silly and trivial, but like snacks, like do never, never go anywhere without any. With food, you know, especially our kids, you know, I mean, Caleb's on a special diet. It's not an allergy, but it's, you know, his intolerances. I mean, you know, our bag is half full of food, you know, and, and in some of these instances, you know, it's a comfort, you know, and if he's, you know, for us too, you know, you kind of want a snack when you, you know, so that's more of a human thing, but preparing him, just making sure I prepare with snacks. And Caleb is a sensory seeking, so he likes lots of touch and rubbing. And so we've done that a lot. Like when he gets anxious, we do lots of, you know, tactile stimuli and just trying to just anticipate that when I, you know, he's getting a little worked up trying to start that early. Um, yeah, I honestly, you know, I'm. Like I said when he was little, I didn't think about notifying the airline, things like that. The only thing I will say that we do, we have done consistently is making sure a window seat. Caleb needs to have a specific seat. With Southwest, when they didn't have, you know, assigned seats. Now they are moving toward that, which I'm actually kind of happy and I don't really want to pay for a seat, but it's, you know, I like the idea of just having the seat. But when, when they weren't just we would have him, we. I would go up ahead of time and get a special pass to go pre board. It was like you said, you it on his ticket, it said intellectual disability. Because I put that beforehand, which is really, which is nice that we can do that now. But yeah, that wasn't, that wasn't there when we were going back to like
• 13:51
  Speaker A: the window seat and being again, being able to ask for it. I think that we're. We are so conditioned to have to ask for so many different supports as autism parents and mothers outside of the home. And I think 99% of the time when you're met with care and concern and how, how more like how they can help and that, that offer of help, whether you're, you know, in a corralling situation with the airline like Southwest and saying, hey, I really, it really would behoove my. My child because of xyz, for the most part. There's so much kindness that's behind wanting to fulfill that for you. And I think sometimes too, there is realizing that you can ask and then not realizing that you can react either way to what's going to be answered to you. It ends up becoming such a fueling skill. And then the more. And just like anything, the more that you do it, the more confident that builds behind it. I have to say, too, it's interesting. Millie has never really. She's been very easy with travel, and I say easy because we've always done it. But Mac has had a much difficult time and to your point about the window seat, I don't know if this is a boy thing, but, man, this last trip, I mean, he could not. He was, like, obsessed with watching the other airplanes. And to be. He's not really into airplanes on TV shows, he's very unaware of them flying in the sky if they're above us. But he was glued in and, like, locked in and thought the whole thing, especially when the jets got going and we were pulled back. You know, those are the moments where I think this is. This is why it's worth it. And we haven't even gotten to our destination yet. He had talked to me about, like, that moment where you realized staying home was costing us more than the risk of going out, even for that little moment.
• 15:32
  Speaker B: Exactly. No, a hundred percent. Caleb, actually. Yeah. He actually loves any kind of public transportation. I think he. You know, planes, buses. I mean, everything. You know, trains. And it is this. That's almost the experience for him. He actually loves that part of it, too. He does love this. Like, he does better with, like, having a little bit of noise. I think it's part of the sensory seeking part of him. But, like, almost like he has a. He has two fans on in his room at night. You know, he likes that little bit of hum. Especially when the plane. Yeah, he loves, like, when he. The plane starts, he gets. You can tell he's excited. He's like, here we go.
• 16:04
  Speaker A: I think that part of. So traveling and getting out of the home and heading to a different city that really echoes the most, like, broadest life lessons we always say is, it's not. It's not the destination. It's the journey. And these kids can sort of like Mellie and Mac, particularly, they pull me back into it. That. Yes, it's a lot harder. Yes. I have to be so aware of every different variable and thing that. That could go wrong and can go right. But they. They pull you into that moment so much that it does become the journey of just getting to the destination from whatever that is, you know, exactly when. When were the biggest hurdles for you? You know, as he. He's aged and gotten older and what is now, like, old hat.
• 16:47
  Speaker B: Right. The biggest hurdles still are, you know, the me that. You know, we've done everything fairly right. Or. Or we. There's things that we can't control. This last trip we went on in January, we were delayed. He got a little bit. Got a little anxious on the plan or started getting worked up, you know, and so. And as he get. Has gotten older, obviously, he's much bigger. So he's actually taller than me. So that's where having like rescue meds are, is important to me. Just, it's even just a peace of mind. And, and he doesn't always need them, but me having them and knowing that like I can help him, you know, calm down sometime, he just needs that. This part of autism is these kids don't have a, like a self soothing. Their self soothing mechanism is, you know, not, as I say, not as developed as other people's. Although I do know a lot of neurotypical people don't have one either. But you know, but just having those medications and if we need them, using them, so that still is like a, that's probably our biggest hurdle that we go through. And I mean, and I wouldn't even say I don't know how big that hurdle is because having the medications, we don't. I feel like we're just feel like safer about our situation and him having a major meltdown. But, but yeah, I mean when things go well, like the flight's going well and things, I mean he's perfect. I mean I can't even get over like he's just like. We went this summer, we went to London, it was a direct flight which was nice six hours and I mean not a peep from him because everything just kind of went smooth. So as long, you know, when it comes to like traveling and things working out, like if they do, he is great. And so and that, that's kind of our old say the old hat stuff of just like he's just used to the process of, you know, getting through security, sitting down, getting on the plane, et cetera. So it's just that the meltdown, fear if something is not going perfect or you know, a fluke is still there. And we just again, we try to
• 18:37
  Speaker A: manage it with what is your reason behind why you even began sharing more on Instagram and as on Caleb's courageous travels. What was, what was your ignition energy behind going, you know what, we're doing something different and I want to be a mirror and help other parents in similar situations. Right.
• 18:55
  Speaker B: I, I just think I just always had this passion for travel and even growing up as a kid, my dad, you know, initiated that in me and we come, you know, I come from a very working class family. You know, my, you know, my parents were, you know, did not have, they didn't travel when they were young and they, we did travel a little bit, but I, you know, just my dad loved the idea of travel and so he kind of installed that in me. And then as I've gotten older or, and then I had Caleb, I just, you know, it's just one of those ideas of like, I don't feel like I have to give this up or we should give this up because of, you know, our situation. You know, I don't feel like he should be deprived of that love that I developed as a child and then my dad gave to me. You know, I think this should just be part of our story. And. But then going out in the world and traveling, you know, you realize, you know, we're the only ones on the plane that have disabilities or initially were, you know, we're the only one, you know, and I was like, if I can bring what we're doing to the world and bring more people like us on, on trips and seeing people, then it becomes less of a, it becomes less of something that's peculiar or odd or you know, like out of the ordinary and people, it just becomes people's part of what people see.
• 20:06
  Speaker A: Well, it's your point, like, I mean, and then it's such a funny dichotomy with social media and online is that we share online to be a mirror to help others, to be up to, to do and to practice something that we know that has been so beneficial for us as autism moms. Yet then because it's shared online, that's actually not real world interaction. So you have to then bring that back. So it's like this back and forth of like, I'm going to share this way, but then I'm going to go out and actually live and I'm going to bring it back and share. And you know that that conscious choice is part of the beauty of the global village that we live in now. But it's also this like great heavy weight because, you know, every mom and child is going to do this differently. You know, for some, for some interaction and travel is literally to the town, over to the playground. That finally is right. I say that from exactly from a place of like do those small things to continue to just interact and to get out so that when big if travel and a plane ride seems like insurmountable right now, do the small things that, that just get you out to potentially have that on as a desire and goal for down the road. I spoke to a mom at swim lessons a few days ago exactly whose child happens to float around with Millie and Mac in town at different therapies and was flying for the first time. And I said, you know, I have to Be honest. Like, he's like, on fire with life. Like, I, like, I can't see him being anything but like an amazing little angel on the flight, you know, and she kind of laughed and said, part of it is really just building our own selves up to do it. She's like, I'm sure that he could have done this years ago, but it also took me believing in myself. And I think that's maybe part of this whole thing is like believing that you can do it too. Now talk to me about where your own internal motivation comes from. And you, I know you shared about your, your family and how you were raised, but it's not just believing in the child. It's also believing in yourself.
• 21:57
  Speaker B: It is believing your. Yes, exactly. I, you know, I've, I've had. Do have a little bit of delusional self confidence. My parents instilled in me too. You know, I'm great. I can do this. You know, even when I was, you know, younger, you know, there were a couple times in sports, my mom was like, you know how we told you you could do anything? You probably just shouldn't do this because you're not good at this. So some of that does come from that. But I will say I remember my, my, My parents helped me raise Caleb, and my dad did pass, but when he was, when Caleb was younger. And I would worry, you know, about the plane rides or the travel and, you know, I think it's just this big, this idea of just, just try it. Just try. Like, what's the, what's the worst that's gonna happen? I mean, we get to the airport, it has a huge meltdown. Then we just don't go on the trip and we try again. Again. You know, it's like, the world is not going to end. Your child having a meltdown with, you know, it's, it's, it's, you know, it feels at the moment you are in the moment, you feel like it is, but really, you know, you know, you have to look back and be like, we've had lots of meltdowns and we've gotten over it and we, and we've, we've gotten through it, you know, like just this idea of. Yeah, exactly, exactly. We survived all of them. So just this idea of just try, you know, and give it a whirl and see what happens, you know, And I'm still, I mean, I would not say I'm perfect at it. I mean, it's just one cute little experience. We just went on a Cruise for Caleb's 21st birthday and on his birthday I wanted him to try. They had one of those wave flow rider things.
• 23:24
  Speaker A: Yeah.
• 23:24
  Speaker B: So I wanted him to try the boogie board and I signed him up and I, then I get up there and I'm like, he can't do this. We can't do this. What am I thinking? I mean, you're an idiot. He's going to hurt himself. He's going to look like a crazy, you know, like. And so the whole time is standing in line thinking this and I'm. But I'm like, I don't know, we're just going to do it, you know. You know, and of course they go over like all the worst case scenarios because they're legally responsible. Yeah. They're like, yeah, you could, you know. And so. But sure enough, I get him on there and he. It doesn't go perfect, of course. And he has a hard time understanding how he has to lay on there. But man, I'll tell you, he got out there and he was on that thing for like three minutes and just living his best life. I know he loved it. And I mean he did it. And I was like, this is another example.
• 24:06
  Speaker A: Everything's going to put up every barrier to say don't do it.
• 24:09
  Speaker B: That's right.
• 24:10
  Speaker A: Every barrier.
• 24:12
  Speaker B: Right.
• 24:12
  Speaker A: You know, again, going back to like the good people of the world, like, yeah, they're legally bound to say what's going to go wrong. Right. That's. I, we understand that from being parents that like, yeah, there are things that are going to go wrong and they have to be protective of their companies. I think for the most part the way, the more in which that families like yours and mine live out loud and share our truth, there's more accommodations to help make things like this possible. And I think that one of the things that I want to just please shout from the rooftops, you know, TSA cares. I'm not sure if you've ever used that for Kayla, but man, I mean I used it a lot more in the earlier days with traveling with them. I don't smush anymore with TSA PreCheck and just sort of our experience and strength going to do it now. But I say that is that there really are programs out there. And I, and I think, and I want to make sure I'll put in the episode summary that about this too. You don't have to do all this alone. You know, every company, every part of the travel experience companies are catching up to this. I think that the. And it does. I know that so much of it is a double edged sort of like. Well, that's more energy to plan and it's more energy to do, but it does alleviate and will help the process go smoother for like a little bit more of like preparation, preparation energy. Um, and I'm really happy that's something that maybe seems small to typical families, but it's never lost on me. The TSH program.
• 25:31
  Speaker B: No, exactly. Yeah. Just having, and, and just having those, you know, it's almost like you're a little feather, you know, dumbo in his little feather. You know, just having that, knowing it's there. You may not use it and, you know, you may not even need it, but just having these.
• 25:46
  Speaker A: Exactly. Well, Jen, I really am so thankful for discovering you and what you're sharing about traveling to the world with Caleb. And you are one example as to why it makes the world better for being able to see in reality the fullness and the full life of what it is to be a mother of children with autism. But also what the possibilities are if we can just get outside. Also take that next right step, the next right step forward. Continue to share and for everyone listening, I will be sharing all of the ways which you can find Jen and follow her story and Caleb's online on Instagram and as well as some of the programs that she and I have both found to help aid in easier and more accessible travel for our kiddos.
• 26:29
  Speaker B: Yeah, exactly. Thank you for doing this too. This is wonderful that you have this podcast.
• 26:32
  Speaker A: And until next time, everyone here on the Inch Jones Podcast,