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Don't Let Fear Make Every Decision: Traveling with Autism | Jordana Izzo · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to the inchduns podcast for families raising children with significant disabilities. Travel. Traveling outside your home can start long before anyone even packs a suitcase. We are already traveling through the trip in our heads, right, as mothers and caregivers. Like the airport, tsa, waiting, food, the bathroom situation, elopement, sleep, sensory overload. What's the hotel room going to look like?
• 0:27
  Speaker B: The pool.
• 0:28
  Speaker A: And any unfamiliar door might be opened by my son at 3am in the morning. Right there's somewhere. And somewhere in that mental itinerary is the question, is this even worth doing? Like, why am I even attempting this? So my guest today is Jordana Izzo and has built so much of her work around challenging the assumption that disability automatically requires a simpler life with no travel. And she is the director of accessible travel at Travelmation. And is this started personally for you after her son Salvatore, AKA Sal, was diagnosed with autism. You know, she was told that her family would probably need to slow down and stop traveling. And she was like, why? You know, and Salah's significant support needs and their family does travel too. And that aligns so much with what my own personal journey as a mother who never stopped traveling with Milly and Max. So today it's not really going to be a conversation about the perfect autism friendly vacation. I'm really more interested in talking with Jordana about something that's a little more complicated. How do we expand our children's world without pretending that they're. That the risks and the work and the planning and the nervous system load required to do that aren't real, because they are very, very real. And maybe it's learning how to prepare well enough that fear doesn't get to make every decision for us. So, Jordana, thank you for being here and welcome to the insurance podcast.
• 1:51
  Speaker B: Sarah, thank you so much for having me as a longtime listener. I always love all of your guests and all the conversations that you have and I think this community that you have built and all, everybody that is involved has just been such a resource for all these families. So I'm very excited to be part of that now.
• 2:08
  Speaker A: I love it. I'm so glad. I'm so, so glad you reached out. So before accessible travel became literally your profession, you were just a mom that loved to travel.
• 2:17
  Speaker B: And.
• 2:17
  Speaker A: And then when Sal was diagnosed and people started suggesting that part of your life might be over, what did that authentically bring up for you when you started hearing the slowdown? Maybe you shouldn't. What did that bring up? Alexa, stop.
• 2:30
  Speaker B: So, so I started as a Travel Advisor in 2019. I always wanted this side gig type thing where I could make a little bit of money on the side. But I just, I really liked doing it. I was a Disney kid, I was a Disney adult. We, my husband and I guy, we honeymooned at Disney. Like we just, we were. It's very engulfed in it might as well. And so with that, you know, I, I found this career, I found this great company, Travel Nation. And then Covid happened and the world shut down and I was kind of like eh, I don't know if this is really for me. You know, no one's traveling all this stuff at the same time. I had already signed my contract until 2021 and in August 2020 my son was diagnosed with autism. And I, you know, and so with that, when he told me I wasn't going to be able to travel and I kind of wanted it wrong and say no, I'm making this my life mission. He's gonna, my husband and I looked at each other and said we're gonna get him whatever help he needs and we're gonna make sure he has the most amazing life. We're not slowing down. So you know, that kind of lit a fire under me. And when I saw all of these other agents and parents coming up to me and asking how I did it and things like that, I had talked to my, you know, my boss and the amazing president and founder Travelmation, Adam Duckworth. And I said no one else is focusing on this like from a neurodevelopment, from a neuros part of you. So you know there's wheelchair accessible and things like that. But I said there's, there's not like a full picture. And so I created the, our accessible Travel certification in 2023 which opened it up to our agency to kind of get that training of how to prepare families, how to really ask those questions and make sure that you're getting them into the perfect spot of what they're looking. And in, you know, 2024 I became the director of Accessible Travel. And I have been in, you know, from there I think just kind of being that person talking about it and making it positive and making it possible. I've won a few awards. I've been in New York Times, I've been you know, a couple places. So it's been really cool to kind of build this career just from one moment of this, this happening to my son. He is now eight years old. He has been to multiple countries, he has been on multiple cruises. Still a Disney fanatic. We Love it. It just looks a little bit different than it did, you know, when I was running in the parks from morning to night.
• 4:53
  Speaker A: Yeah. You illuminate for me what I hope that my platform does too, which is being a mirror, not necessarily being the example that has to be modeled after perfectly, but to be a mirror and to show that there's a difference between this is not possible to do and this is gonna be difficult, but to be the mirror of the, of the latter, because it's never not difficult, it's just. It's just allowing that lens to remove the sense of just the, the what we attach to it. Right. Difficult doesn't have to mean not able to be fulfilled. It just means that it has a little bit of a different structure around it. Right. And I think that, you know, many disability families keep ask themselves like, well, can we technically go? Can we actually do this? And I think what you're saying is you're building the platform of saying, yeah, you can technically go and you can have a great time doing it.
• 5:46
  Speaker B: Right, Exactly. So a lot of it comes with setting expectations of, you know, we spend all this time building a perfect house for ourselves and we can't just pack up our house and bring it to our destination. So coming up with those resources of what, what do I have to pack with me? What safe foods, what sensory toys, what safety equipment, those sorts of things. And just making. And just knowing that, you know, it's not going to be the same as day to day in your house because this is your safety zone. And so, you know, setting those expectations but also saying you're gonna make some memories and that's a pretty awesome thing. It's just we, we really try to keep it positive and we really just try to say, you know, worst case scenario, this might happen. But what if it doesn't? What if it, what if, you know, that next step happens and even if you don't look like that picture perfect family that's in marketing and things like that, you are going to make memories that are based on what your family is supposed to do.
• 6:40
  Speaker A: Yes. And I think too, I love a few things that you just mentioned here. One, the expectations, I think that some of those are so soc conditioned in us from a younger age that we even forget that we have these expectations when the moments that come can still just be like, so joyful and so memorable that it, it wipes away all those, you know, preconceived notions. And I also think too that when those moments do happen, they even hit on a larger Scale. So while expectations are lowered, those moments that end up coming and. Or just happening in the moment spontaneously. I know I can think of one. For instance, were, you know, I love Disney as well, and having a really tough time with Milly in line for a meet and greet with. With Mickey. I think it was at Hollywood. Mickey, like near somewhere in Magic Kingdom, I think, or Hollywood Studios. And the. The line was tough. It was a tough line. We didn't have the das pass back then and got to the front. And I was pretty fatigued by my keeping my own calm. And when the moment was upon us and the way in which she leaned in to hug and be hugged by Mickey and touch his nose, and the reaction, I mean, gosh, it just speaks to what you're saying. It was so worth it, that mem. That moment, that memory was so worth it.
• 7:50
  Speaker B: And I had a mom text me yesterday. Cause she's actually at Magic Kingdom. And she said, she sent me a picture of her son, like, hugging Mickey. And she said, I can't stop crying. And I said, are you crying because you finally made it and all the anticipation was worth it, or because you finally met Mickey? Cause she said this was her first time too. So I think we just have to realize that we're making, as parents, we're making memories for ourselves as the first time as parents in this situation too, but we're also making those memories for our kids, you know, so it's okay to have all those feelings.
• 8:23
  Speaker A: Yes.
• 8:23
  Speaker B: So let's.
• 8:24
  Speaker A: Let's switch gears here a little bit. What are. What are some of the pressure points that we can genuinely plan around? You know, tsa, you know, crowds, food, transportation. Like, you know, I live right near Newark Airport, so I. While I have access to multiple different airports in the New York City area, you know, I make a concession to myself that we really typically only fly out of one place. And that's by. That's. That's by choice. That's by conscious curation. Because I can then have a lot of things that can be predictable. What are some of the things that, you know, you share with parents that.
• 8:54
  Speaker B: That.
• 8:55
  Speaker A: That they can plan around when it comes to maybe the air flight travel or a hotel situation?
• 9:00
  Speaker B: Yeah. So I actually work with a great company called Autism Double Check that does Autism flies events, specifically in the Northeast, where it's those practice opportunities. They're. There's a bunch of different companies that are doing this, but that. They're just a company that goes to my local airport. I'm in Rhode Island. They come to Providence twice a year. So I'm constantly talking about, hey, go to this practice event. And you know, you actually go through security and you, you board the plane and you sit and have a snack and they turn the lights off and things like that. So it's just really giving that. That practice run of so many things we do in therapy and occupational therapy and.
• 9:35
  Speaker A: Right.
• 9:35
  Speaker B: Like, this is like kind of the structure our children are used to. So I think that, you know, setting up that predictability. Something else that we do like in my family is we, we like to watch like walkthroughs and we like to watch. I mean, I do it for research because I like to say, hey, if you take a right, you can go to Sorrento's on Royal Caribbean. But if you like. But my kids like to watch it because they are, you know, they just. I don't know. My youngest is four. His name's Leo or he's five now. Sorry, we just had his birthday. But he just gets like hyper fixated on like watching the walkthroughs and the videos and like, there's so many different people out there and. And that content creators that really do build these and, and don't realize that they're making it as a resource for us. And it's all over YouTube. So just go and search your hotel walkthrough and you can really prepare your family overall.
• 10:24
  Speaker A: Yeah. And. And that, and that's really taking into account the way in which your child learns, you know, that practice, that routine, you know, just like anything they like to, they enjoy the repetition of being able to. And then when they do it live, it's almost like even more deeply satisfying.
• 10:39
  Speaker B: Yeah. There's a sense of familiarity there. That's right. Really. And it's just. And you know, talk about like bringing your home out of your home, but like, if you're kind of already bringing it into the home and they know what to expect, it really does help, you know, your situation with, you know, being like, oh, do you remember seeing this when you're watching it on tv? Like, and now you're here. How cool is that? So things like that kind of really help the situational.
• 11:01
  Speaker A: So something that I wanted to touch upon because at the end of the day I'm a Taurus and I love my rest and I love my home and I love my stability and I also love my downtime and so do my kids. And you. I really know that. You know, I love that your emphasis on downtime is crucial on vacations because a lot of our American culture and travel, family culture is like maximizing everything and you know, getting to the max and making sure not to waste a single, a single moment. You know, why can doing less actually allow down, allow a family to do more?
• 11:34
  Speaker B: So setting up for that downtime when you're already overstimulated by your environment of there's so many changes going on, so many different noises, so many different smells, different, you know, this bed is not my bed. Like, things like that you really want to try to stabilize and you know, make sure you're just kind of laying on that couch and giving iPad time or whatever. It really, it's, it's tough. Cause we live in an Instagram type world where everybody is trying to take the perfect picture and trying to make sure they get all the shots and they get all the content and things like that, that. But if you really are just sitting back, you're going to end up having a more enjoyable experience. I try to tell my families, pick three things that you really want to do for the day.
• 12:14
  Speaker A: Yes.
• 12:15
  Speaker B: You know, I want to sit on the beach. I want to go in the pool. I want to eat, you know, a
• 12:19
  Speaker A: sushi, whatever, meal, whatever.
• 12:21
  Speaker B: Yeah, it's just like you have to pick those top three things and anything extra you get done is great. But you also want to make sure to time block and set those times up for that rest and that relaxation so that you can pick up and keep going.
• 12:34
  Speaker A: Yeah, I, I love psychology, the psychology behind that too. A lot of times we, it's nice to reduce those expectations, choose those things that matter most. Because when you do complete them, even though the list might seem smaller than your desires were on the front end, you're sort of closing the loop. And that's really satisfying to, to anyone, but specifically to families like ours who can be hugged in the ways of. Well, I should be doing more. I wish I, I'm, I'm spending all this money. I should be doing this here. And when you really boil it down to a few things, if you know you can check those off, that does something to you and your kids. Like you, there's a satisfaction that is giving. You're like, we did those three things. Like that's, we, we did it today.
• 13:13
  Speaker B: Yes. It's like setting up like a checklist and like crossing things off and things like that. It's really, you know, you're, you're doing something mentally where you're just kind of like you have that satisfaction of yes, yes, yes, all things are done. And I think that you know, we have this, almost this stability in us that we're like, okay, cool, I did everything I needed to do. And that is, you know, that sets up. Sets us up for success instead of failure. Yes.
• 13:39
  Speaker A: All right. So, you know, I have two kids on, you know, with profound autism. Both on speakers. My daughter Milly is. I could take her if you told me right now, Jordana, that you're like, you have an all expense trip to Hong Kong and you have to be there in 24 hours. And here's the flight and the details. I could take Milly and beat, beat the time. Like, she is locked and loaded when it comes to travel and change. She does not elope. She is very aware of where I am at all times. Mac, not so much. An elopement is a major, major part of my leaving the house with him. It's the number one thing.
• 14:12
  Speaker B: So.
• 14:13
  Speaker A: And I still do it. But it. He.
• 14:15
  Speaker B: He is the.
• 14:15
  Speaker A: He is their cause for the most anxiety that I have when we leave the house. So how do you coach and share through your. Your agency to plan seriously for those risks without. Without that answer becoming like, we're just not going.
• 14:29
  Speaker B: Right. Yeah. So things you want to look at, resources, like even, you know, like, we talk about Disney World a lot and like that would be like maybe getting a special needs stroller and bringing that with you and then you can actually get it marked as a wheelchair and bring through the queues, things like that. You know, that's something we use for my son Sal. So it's. But other things are, you know, you see those shoe pads that you can put the Apple Air tags in, like, are very important. There are definitely just going outside on a typical day. There are these things that, they're very real risks for us. But we, when we put up all the precautions of being ready, we definitely prepare ourselves a little bit better. And I know that a lot of people are concerned about is that little lock on the door in the hotel rooms, is that even going to work? Well, there are locks you can buy on Amazon where it's like that extra safety and that extra layer. We are people that definitely have fire hazards in our hotel room because we're putting the medical stroller and the toddler stroller and some of the suitcases. We're just making it impossible to get there. But we know, you know, that possibility of elopement is there. So we just want to make sure that we always have our bases covered and trying to even still make it a possibility, even though, you know it's going to Take us a little longer to get out the door in the morning.
• 15:46
  Speaker A: I'm sure you've already talked with your clients ad nauseam about this, but for me, and I guess just because we're using Disney as an example, and I've been so often, I love knowing what resorts have fenced in pools. Like the ones that aren't just in an open space. Like the, the fenced in areas are so crucial for me that it's worth any, you know, level of hotel difference if the pool. Pool is fenced in or if the play space is fenced in. So there are questions that you can ask. I know a new hotel popped up and a friend who has typical kids. I saw her photo and I go, that pool looks awesome, but is there a fence? And she was like, no, there isn't. It's three quarters of the way. And I was like, thank you. But to your point, like, you can, you can ask, once you know how to ask the right questions, it will give you a much more sense of peace even alongside those risks that you have to think of.
• 16:33
  Speaker B: Exactly. And that's why I think when you're planning these types of trips, you do want to talk with someone. And I'm not trying to like toot our own horn, being like a specialized travel agent who knows this stuff. I'm even saying, call up Royal Caribbean, call up Disney, call up whatever. And you can ask these questions because you want to make sure you are prepared. But I think when you pick up the phone and you talk with someone versus watching, you know, trying to find pictures or looking at reviews or things like that, and you're actually conversating, it does open up those types of possibilities of questions. And it's like, oh, I just thought of this.
• 17:09
  Speaker A: Exactly.
• 17:09
  Speaker B: That you need to bring in that personalization. In a world of AI, everybody's like, oh, you're a travel agent. AI's out there. Like, aren't you afraid it's going to take your job? No. Because people want personalization and they want delegation, delegating and things like that.
• 17:22
  Speaker A: Yes.
• 17:23
  Speaker B: So you want to make sure you're calling in and talking to whoever the destination is or your travel advisor to really make sure you're getting those, those questions answered.
• 17:32
  Speaker A: Yeah. I've never done this, but I know that some resorts in this world or in the United States are really starting to cater to more week long access for disability families. You know what changes whenever disability families sort of travel together? You know, because suddenly you don't really have to explain yourself as much. You Know what, what are the benefits that to places and traveling during weeks like that?
• 17:54
  Speaker B: So I really something we do at Travelmation is we do a couple of these and I love it because it is so funny. It is just a different world you're stepping into. You know, we do an accessibility cruise every year and I can think about last year when we went, we went last October. And you walk into the dining room, one of the kids doesn't have his shirt on. One of the kids is stimming super loud. One of them's throwing something. One of them's only eating peanut butter toast. Like it's just like. And it's so normal and all the parents are just talking and they're like, you know, they're just glass of wine and it's just, it's, it sets us up for a normal thing. So like if you're the type of person that has, you know, a reluctancy to travel because you're afraid of people looking at you, come up with a group. See, see if you know, you have friends at school that you know would want to travel together or if you have people in your community or anything like that. See traveling together because I think it just, there's this, we have this sense of like anxiety of everybody staring at us and then if you make your own kind of community around it, it's like who cares? Everybody's staring at us. We're all having fun. So I think that really kind of helps those situations and I love that all these resorts and stuff are really opening it up and bringing all these resources to them.
• 19:05
  Speaker A: Yeah. And I have a typical developing 13 year old daughter too who she is the only typical sibling amongst the three. And I always want to keep in mind her needs and making the entire, without making our entire trip smaller to still respect what she desires and how she might want to try something that might feel like beyond the limit for, for her siblings. What are some things that are tips that you can keep in mind that might align with parents that have questions like that?
• 19:31
  Speaker B: Yeah, so my four year old is. Or five. I said four. My five. My five year old is, you know, he might have some developmental things later but we haven't figured that out yet. But you know, he's very go, go, go and you know, he doesn't want to stop when, when my 8 year old does. So a lot of stuff like my husband and I, we divide and conquer. We're like, okay, you stay here, you know. Yeah, I feel like a break. I'll go, you know, like And I'll take Leo or whatever. So it's, I think, coming up with making sure that you're bringing in your own, you know, assistance, where it's like, are you bringing a grandparent? Like, multigenerational travel's huge right now.
• 20:07
  Speaker A: Yeah.
• 20:07
  Speaker B: Group travel's huge right now. So even bringing friends, siblings, whatever, where it's like. And kind of coming up with a game plan of so that everybody gets a break. And if you don't have that community around you, there are companies that you can actually hire. So, like, I know, you know, or not really hire, but that group travel, Autism on the seas I work with, they actually bring respite on board so that you can have a break. And their whole kind of concept is making sure everybody's enjoying their vacation. So that is the siblings, that is the parent that doesn't have to put a drink down to go in the pool with their kids because, you know, the respite's in the pool with them. So it's definitely really cool to kind of put that out there, you know, and you have that. That option. There's people that will go in the parks that are behavioral analysts that'll kind of, oh, we're gonna go back and we're gonna take a break. And you can. You can definitely find those resources around for sure.
• 21:02
  Speaker A: I just absolutely love this conversation, Jordana. I keep coming back to the. These words, though, and it's something maybe I haven't. Maybe I should write down and put on a sign in my own house. Cause I believe in it so much, is don't let what might happen take away from what could happen. Right. And I just think for families like ours, the might happen is very real and the risks are real and the planning is so very real. And at the same time, on that razor thin edge you cross over and it's what could happen. It's like joy and discovery and confidence. Like these kids that, like, can get confidence from these travels and connection. I think the world gets a little bigger instead of smaller even with the fear. And maybe that's really the inch zone of here.
• 21:47
  Speaker B: Yeah, absolutely.
• 21:48
  Speaker A: And not traveling without fear, because refusing to let fear make every decision for us is part of this journey. And I'm just so thrilled to be able to share your work. I'll be linking everything that you do with your company, with your agency, alongside the other amazing resources that you shared in the episode summary. And I just am really thankful for you being here at Incones. I know that you are going. This episode is going to become so saved and flagged for so many to just reference and go back to and know that there are people out there, there are agencies, specifically yours and many others that are doing the work to rid some of that fear of travel. So thank you so much for being here on Inchstones today.
• 22:28
  Speaker B: Thank you, Sarah, for having me. I really appreciate it.
• 22:30
  Speaker A: All right, everyone. Well, until next time here on the Inchstones podcast.