Speaker 2 00:01:00 And greetings, thank you for joining disability and progress, where we bring you insights into ideas about and discussions on disability topics. My name is Sam. I'm the host of this show. Charlene doll is my research woman. Good evening, Charlene.
Speaker 3 00:01:14 Good evening, everyone.
Speaker 2 00:01:15 Ha I got you on the first try. I wanna remind everyone that, um, if you wanna be on our email list, you can email us as disability and progress. Sam jasmine.com. You can converse with us, uh, compliment us, insult us, hopefully not insult, but talk to us anyway. This week we have Don Barkley. Don is the author of the book, traveling different vacation strategies for parents of the anxious, the inflexible and the neurodiverse. Good evening, Don.
Speaker 3 00:01:49 Hi, how are you?
Speaker 2 00:01:50 Thanks so much for waiting for me to get things going here and thanks for your time. Just shows how flexible you are. Um, well thank you very much for coming on and we really appreciate it. And I wanna start out if you would, by just telling is if you would a little bit about you give us some history on you.
Speaker 3 00:02:13 Well, I grew up the daughter of two travel entrepreneurs, ah, who owned a big travel agency in Manhattan and then had a couple of smaller branches. Uh, and I worked, I mean, I was traveling from age two. I grew up in the business. I worked for them for many years. I also branched out into travel trade writing and I've been the senior or contributing editor for four major travel trade publications. The most recent being insider travel report where I currently do, uh, a column on family travel and special needs travel. And when I had children, uh, they were not as interested in traveling as I was <laugh>. They were, there's a reason.
Speaker 2 00:02:57 The funny how that happens
Speaker 3 00:02:59 Yeah. Is a reason why the book is titled for the anxious, the inflexible and the neurodiverse mm-hmm <affirmative>. So my kids weren't very good with transitions and, uh, a number of other sensory issues. And so I started researching because I saw there wasn't a book and I needed one and I'm a firm belief that there should be a book for everything. Ah,
Speaker 2 00:03:21 Yes.
Speaker 3 00:03:21 And there, there wasn't <laugh> so, uh, I started interviewing people. I interviewed Dr. Tony Atwood, who is very large in autism circles. I interviewed Dr. Ellen Lipman. Who's very large in 80 HD circles. And then I kind of hit a wall and it wasn't until many years later, when, uh, a group called I B C CS created a designation called the certified autism travel professional that I knew how I could write the book because these people are trained in how to work with the population of, uh, people with invisible disabilities. Many of them are special needs parents themselves. And they introduced me to their clients who were willing to be interviewed and a lot more information on the web in 2019 to, to further research. So thanks to all that. Plus a two year pandemic, I had time to write the book
Speaker 2 00:04:14 <laugh> is this the first book you've written?
Speaker 3 00:04:17 No, it's the eighth book I've written. It was supposed to be the first and somewhere along the line. When I hit that wall, I segued into fiction. Oh, so this is my first nonfiction
Speaker 2 00:04:27 <laugh> yeah.
Speaker 3 00:04:28 So I write psychological thrillers and romantic suspense under another name.
Speaker 2 00:04:33 Oh my goodness. You, you need to email me and, and tell me, oh, sure. I I'd love to re I love those, so oh, good. Um, and, and I can promote them for you, so
Speaker 3 00:04:42 That's even better. Yes
Speaker 2 00:04:44 <laugh> um, so this must have been a, a very different deal for you having to write in, you know, non-fiction as opposed to fiction. And, but of course you said you had kind of the real life purpose or experience. Um, can you travel? You told us kind of why you wrote it, but, uh, what did it feel like writing? I mean, this is a big book and I, I do wanna say, I know you con you, you had a lot of stuff on hidden disabilities, but there is a lot to be said, as well as, you know, for disability, you know, non hidden disabilities, because there is an act to traveling it with some of that too. I mean, some of us are easy that they, we can just pick up and go and don't have to worry about too much, but especially now, you know, if you're in a wheelchair, if you're in, you know, there, if you've got equipment, like you say, you know, it's, there's a lot to know about doing that. So when you were writing this book, how did it feel when you're doing all this?
Speaker 3 00:05:51 Well, um, I will address the fact that there wasn't a book about invisible disabilities out there. There are quite a few books about wheelchair travel. Thank
Speaker 2 00:05:59 Goodness. Right. That's true. And
Speaker 3 00:06:00 Yeah, and I do have a, um, I do have a blog that backs up the book and on that blog, which
[email protected]. I do cover phys travel for physical disability, as well as, um, invisible. So, uh, but all mm-hmm <affirmative>. So, uh, but I, you know, you have to focus in on something and I focused in on what hadn't been written about that I felt needed to be written about. And I also felt that a lot of the tips, the special needs travel tips could really help any travel. Yes. Uh, any family travel because every child, when they're taken out of their comfort zone is anxious and in flexible. So I felt it was a book that would work for across, you know, the divide. Uh, how did it feel? It, it felt very natural because I'd been writing nonfiction for years in magazine columns.
Speaker 3 00:06:48 Um, I was a senior editor at travel agent magazine for years. And so it, it, it was very comfortable to do that. Uh, I, I'd always worried about writing a full nonfiction book until my friend, Jerry Bain. Who's been an editor of mine and, uh, really great travel writer said to me, you know, it's just like writing a whole bunch of articles, but stringing them together. It's like, yeah, that's true. So I sort of approached it that way. I wrote it from beginning to end one chapter at a time and took all the interviews and sort of divide them up into the, the different topics. Mm-hmm <affirmative> um, whether it was how to get to a place, what to do when you get there, where to stay when you get there, try to divide it up into a very logical way. What's interesting is coming back to nonfiction after writing fiction is very different because you know, the things have to be true and nobody died.
Speaker 2 00:07:40 <laugh> right. That's true. <laugh>
Speaker 3 00:07:42 In my books, there're usually four or five people who die. Ah, nobody died in this book. <laugh> plus there's a lot more fact checking. I mean, I, when I'm writing fiction, I'm just checking everything on Google as I go along to make sure I'm not getting anything factually incorrect. And when I really am stumped about something, I'll speak to an expert, but here, everything has to be double checked. And everybody who spoke to me had to sign a release. And, um, anywhere that I took a quote that was printed elsewhere, I had to get permission. So there was a lot more of that kind of busy work involved.
Speaker 2 00:08:15 So how did you decide on the name of the book?
Speaker 3 00:08:19 Ah, wasn't originally the name actually, the original name was traveling with the challenging child. And when I spoke to some, uh, special needs parents, they warned me against that because they said it's not the child. That's challenging, it's society, that's challenging. And so I thought of something that would work better and I kind of like traveling different because it really is about traveling in a different way.
Speaker 2 00:08:43 Right. And I do, I wonder too, if, you know, parents are forever trying to get their children. If they do have a disability to fit into society, I mean, you want 'em to have their own unique personalities, but you also want 'em to fit in if they don't, then there's a whole slew of other issues. Yeah. Um, so I, I like the name, I think it's, it, it doesn't lead you to think about, oh, there's, you know, difficult children with disabilities. You have to learn about it. It leaves you to think about, oh, an alternative way is as if you said, just like you said, so I do like that name. I'm wondering, you know, you talk about the, the tips family that families use on, you know, in regards to the autistic spectrum with traveling, um, often work just as well for the, the neurotypical, you know, non autistic child. Do you wanna talk a little bit about that?
Speaker 3 00:09:50 Sure. And, and I do include other invisible disabilities as well, whether they're mood disorders or, uh, attention disorders. Mm-hmm <affirmative>. But I, I, I do feel that we think at least I thought children were gonna be very excited about traveling because I loved it so much. It's like, oh, you don't know what's
Speaker 2 00:10:09 Gonna happen. It's all new. It's gonna be so cool.
Speaker 3 00:10:10 Yeah. And then we forget that children are creatures of habit, whether they're on the spectrum or not, they're creatures of habit, they don't like the unpredictable, they like routine. And they cling to the familiar and there is nothing that's more jarring than travel. And when you think about the different things, even just going to an airport and, and watching people take their shoes off and go through machines and, and have their luggage being gone through, and it's a very hectic, chaotic place, right. And it's not surprising that with the fluorescent lights and the crowds that children could have a sensory meltdown, whether they are, you know, neurotypical or neurodiverse, it's a frightening thing. Uh, so part of the, the strategy of working with young children, um, or children new to travel is to make it familiar before you leave and do a few months of advanced preparation.
Speaker 3 00:11:02 And you can do that in several different ways. You can be, um, reading them, picture books with their favorite characters and travel situations. I list some in the book, but your librarian can offer you a lot more. Uh, I talk about role play and, uh, using the technology that's available to us, such as, um, videos on YouTube or supply, or, or given to you by a supplier that can help you preview every aspect of a vacation. So there is no surprise, right? Uh, and also creating mini experiences, whether it's staying at a friend's house for a night before you embark on a, you know, a multi night, uh, expensive hotel, stay <laugh> and seeing, seeing where the triggers are, whether that child needs the, the familiar smell and texture of their own sheets and blankets and toiletries, or whether they need a fan to drown out the noise from the hallway, you'll figure it out pretty quickly and pretty inexpensively.
Speaker 3 00:12:02 Mm. Uh, same thing with, before you go on a camping trip, put out a tent in your backyard, right. You know, have them experience it ahead of time. And there are programs you can use to experience the airports ahead of time. Thanks to groups like wings for autism. Um, certain, uh, airlines will be willing to give you a tour if, if you need that at a time where, you know, wings for autism might not be operating, cuz that's not all the time. Um, so even a trip to a local zoo or an aquarium or a garage sale can be thought of as a tour. And if a child has a positive experience, you've created a great frame of reference so that when you do go on a realtor, you'll say, remember when we went to the aquarium and how much fun that was, well, this is a tour just like that.
Speaker 2 00:12:49 So you used the term a special needs traveler, um, and growing up with a disability. Sometimes I wonder if that term gets overused, but what do you consider a special needs traveler?
Speaker 3 00:13:06 Um, in the case of the book, it was anybody with an invisible disability. Um, but for the sake of my blog, it would be anybody who needs that special. I don't wanna say treatment, but if they, they need special amenities or, uh, a different way of doing things so that it can be accommodated,
Speaker 2 00:13:26 Your book breaks things down really nicely. And it, it also talks a little bit about three distinct family traveling groups. You talked about starting out about the group, that's the hassle free group travelers or the cautious travelers and the Intrepid travelers. Would you explain those and describe the differences?
Speaker 3 00:13:52 Well, that was not my term. That was, uh, that was a quote from someone else. So let me get to that. Okay. Because that's at the very beginning of the book. Yes. Um, bear with me just a second. Cause
Speaker 2 00:14:04 I have
Speaker 3 00:14:05 No problem been talking about that much. <laugh> uh, hold on just a second. So I believe that was the, was it the family travel association who made that distinction?
Speaker 2 00:14:17 Oh, it might have been.
Speaker 3 00:14:19 Yeah. So sorry to make you wait on
Speaker 2 00:14:23 No problem.
Speaker 3 00:14:25 This is why I always have the book on the computer in front of me just in case. Um, yeah. The family travel association had done a 2017 survey and they're the ones who created those three distinct groups. So hassle-free travelers are people who would prefer to stay home for vacation and just not get involved in, in, you know, all the chaos of travel. If they do travel, they're going to, they're gonna choose all inclusive holidays, uh, or cruises or organized tours. Uh, so you might find them at, uh, club med or on a cruise or, um, at beaches, which is at beaches is, um, actually a certified autism center. Mm-hmm <affirmative>. So they've been trained to, they're actually in advanced certified autism center, trained to, to work with, uh, people on the spectrum. The cautious travelers will go further afield. Um, but they're going to worry about keeping kids safe and occupied.
Speaker 3 00:15:23 So you might more likely find them at a theme park or a water park, something that they know is going to interest the child, the Intrepid traveler are those people who will leave, uh, go out of town. Maybe even when school is not out. And they're going to do things that are unusual, uh, not necessarily planned. They may be the ones that will stay in a small hotel, or they may stay in a, an Airbnb, or they may just wanna live with the people. You know, they wanna see the location the way a native would see it. So that's how you would describe that. The, I, I had suggested that there should be a fourth group and that is, um, people who have anxious and flexible or neurodiverse children.
Speaker 2 00:16:13 Yes. Um, so you also mentioned about, um, what the difference is between autism friendly, uh, destinations and autism certified ones.
Speaker 3 00:16:29 Yeah. It's really important. Um,
Speaker 2 00:16:31 Tell us what that is. Yeah. Well,
Speaker 3 00:16:34 Autism certified autism centers or CACs as I call them. It's not me that calls them that if that's what they're called by this group, I B C CES, the international board of credentialing and continuing education standards. It's a small schools. They're the same people who train the certified autism travel professionals. Mm-hmm <affirmative> will they certify locations, whether they're museums or hotels or water parks, uh, there's just a whole group of, uh, different venues and services that have taken training so that they are skilled in working with this population. So they're called CI CACs. There are other groups that do certification, the champion autism network, culture, city, sensory city. Um, there is, I, I understand that, um, autism speaks is, is going to start certifying, but I, I put in a call to them and they haven't gotten back to me. So I can't speak to that. Gotcha.
Speaker 2 00:17:33 But
Speaker 3 00:17:33 In, in the book, I, which is about 85% strategies and maybe 15% destinations, you can go to cause my goal was to make every trip, autism friendly, uh, the, uh, I, I combine hotels and, and venues that call themselves autism friendly, but that means a lot of different things to a lot of different suppliers. So it's important. And I say this a couple of times in the book, it's really important to call those places before you travel and find out how they got their designation and exactly what it means for them, what they're offering and figure out if, if what they're offering is right for your child, because every child on the spectrum is different and also make sure that, um, what they offer is being offered when you're there, because there might be a museum that has a sensory afternoon, you know, and it's offered one day a month.
Speaker 3 00:18:29 Ah, yes. And it may not be the day you're in town. So right. I caution that I have listed for every destination I include or every venue I include the address. I include the URL, I include the phone number and I have found that things change. Like for example, I was double checking all these the other night. Right. And a lot of the ski resorts now that it's summer have taken away the, the link that I've included doesn't work right now. Oh no. For the skiing, because they're not offering skiing. My belief is when it's ski season, again, those links will work because it was every single one. I had the same issue. So I had, they take it off. So it's gonna be accurate, you know? And it was, it took you to the site. It just didn't take you to the adaptive page.
Speaker 3 00:19:14 So all you had to do is like type in adaptive skiing, or you look around it and you were fine, but you know, these things change some of the, um, venues that were certified by I B C, C E S in 2020 or 2021 were not in 2022. And I think one of the reasons is some people didn't renew the designation possibly because they couldn't afford it cuz they'd lost money during the pandemic or possibly because they lost a lot of staff during the pandemic that had been trained. Right. You know, I think the story is different for everyone. So for those which I found out right, when we were going to press, um, I listed them as 20, 21 CAC. So the anybody who's reading, it knew they'd had the training, but they, you know, they just, and, and when I called some of them, they said, oh, we're, we're still committed to servicing, uh, you know, this population and providing for them, we just didn't renew. So I, I wanted to give them, you know, kudos for having done the
Speaker 2 00:20:16 Training. Right. Um, so that, and that's a really good point that you make to make sure that, you know, if you're really worried about that particular thing, to make sure that they're certified instead of just friendly, because as you say, who knows what that really means?
Speaker 3 00:20:35 Well, I, I think it, it, it probably means a lot, if you understand who's doing the certification, there could be a company that comes along that hasn't been certified by any of these people and just say, oh yeah, we're really autism friendly. You know, it's interesting that there is a company called becoming rentable. And, uh, this lady, Lorraine is, um, certifying different vacation rentals to make sure that they actually are say wheelchair accessible because she found that a very small percentage of, um, venues that say they are accessible, right. Really are because they're self certifying and there wasn't, you know, so whatever the group was, whether it was Airbnb or V R B O or whatever, they weren't really, um, checking up, they were just taking the owner's word for it. So she's actually certifying these. Um, and she's always doing the same thing for autism and vision impaired and, um, hearing impaired. So a really interesting
Speaker 2 00:21:39 Services, a lot
Speaker 3 00:21:40 Of what, what was interesting was how many locations said that they were accessible for wheelchairs and were, and that would be a horrible thing to find out when you
Speaker 2 00:21:48 Just show up. Oh gosh, I know. And, and there are, there actually are certifications that you can find like how wide doorways need to be and how tall counters need to be and et cetera, et cetera. Just kind of like, if you do the research like you did, um, but you have to know that. And I suppose some businesses just, they don't really know, they think, well, if I can fit through it, <laugh>, you know.
Speaker 3 00:22:14 Yeah. Yeah. I found out a lot about this years and years ago in the early nineties that I did a piece for travel life magazine on wheelchair travel. And I did it specifically because my mother-in-law was in a wheelchair. She was a polio survivor mm-hmm <affirmative>. And so that was very eyeopening to see what went into being accessible. And, and I, I do think that there are places that just don't take into account, like what you said with lips and width of doorways and mm-hmm <affirmative>, um, that's why I think what Lorraine is doing. And there's a story about her, on my, on my traveling, um, different website, uh, on the blog, all about what she's doing. And, uh, she's very interesting. And I think she's providing a really great service.
Speaker 2 00:23:00 What has been people's reaction to this book?
Speaker 3 00:23:04 None because it hasn't come out yet. <laugh>
Speaker 2 00:23:07 Ah,
Speaker 3 00:23:09 It's been very quiet. <laugh>
Speaker 2 00:23:11 So when, when will the book come out?
Speaker 3 00:23:13 It's coming out August 15th and, uh, it'll
Speaker 2 00:23:17 That's right. We got it early. I forgot all about
Speaker 3 00:23:19 That. Yeah. That's okay. It's, it's available for pre-order now. And it is, um, it will be coming out in hard cover and, uh, ebook and also audiobook.
Speaker 2 00:23:30 And did you have any people who kind of went through and, and kind of read to see what they thought of it or,
Speaker 3 00:23:38 Yeah. The people who quoted on the back cover, uh, were pretty happy with it. I mean, you read it. Yeah. I'm hoping you liked it. <laugh>
Speaker 2 00:23:46 Oh, so my God, it was so informational. It was almost like more than I could ever want to know. <laugh> you'd have to really, I mean, you, that, that's the thing, it felt like you tried to really turn over any type of place that someone could go practically. I mean, there's so much of a, of a choice of things. So, um, you do make a big deal of, of reading travelers, you know, books to family that perhaps, you know, haven't introduced their kids to travel and tell me why you think that's so important.
Speaker 3 00:24:25 Well, as I was saying before, I think you have to make the unfamiliar familiar. And so you have to really prepare. And part of that is orienting the child and also getting their buy in, I think is really important. Uh, you know, maybe offering the child a choice of three destinations that have all been preapproved by you. So there are no wrong answers and saying, where would you like to go? And then giving them the option on each day. And of course, this all depends on the abilities of your child and how high functioning your child is. But, um, saying on this day we can do this, this or this again, you've preapproved, all the choices. And so you've got the child buying in and so he's gotta, he, or she's got a vested interest in the success of the trip. Yeah. So I think that's important.
Speaker 3 00:25:11 I think it's important to pace the vacation, to work with your child. You can't travel with kids the way you did when you were on your own before you had children, you can't maybe get five or six things into a day, but maybe one or two will work really well with an afternoon at the pool or letting the child watch TV, because that's what they enjoy. Um, you wanna get some things done, but they need to decompress. And that's really important. I, I, as you saw, when you read it, there was one family who makes their, uh, camping trips a day longer, just so that they have that first day to decompress. And it's actually the neurotypical child, cuz they have one of each, the neurotypical child just wants to sit in the tendon, read that first day. So you know what they do it that way because then the trip is, is interesting and um, it is just enjoyable for everybody and you just have to pace it for them.
Speaker 3 00:26:06 And I also, as you saw, made a big deal about special interest travel and making a child-centric vacation, being one that feeds into the child's passions. If people have children on the spectrum, they know that they have very specific interests and passions. And um, I included as many of those, uh, interests as I could in one of the chapters toward the back of the book. Uh, so whether your child loves insects or rocks or um, elevators or whatever it is, <laugh>, um, you know, this one child like mustard, uh, I list where you can go around the country, broken down by state to investigate those passions. And again, that's gonna make it memorable for the child.
Speaker 2 00:26:49 When you talk about having a place, get, you know, certified in these, you know, things to deal with with different disabilities and stuff. Do you think that they charge the end user more because they're specially certified?
Speaker 3 00:27:08 I, I couldn't speak to that. I mean they're, most of the places are pricey anyway.
Speaker 2 00:27:14 Oh yeah. They are,
Speaker 3 00:27:15 You know, I mean, you know, you have, of course I try to include as much as I could, uh, for car trips and camping and those are low cost that's right. I mean, when you talk about some of nobody ever said that a theme park is an inexpensive vacation. Nope.
Speaker 2 00:27:29 It is an
Speaker 3 00:27:30 All inclusive or a cruise. Although I, I personally think cruises are really affordable, um, because of you get everything for one, one cost and what cost and I'm a big advocate of cruising, uh, but you know, they're expensive anyway, and this is opening up themselves to a new market. So it might cost them a little bit more, uh, the properties, not the people. Um, but they're making up for it in volume.
Speaker 2 00:28:00 Gotcha. Don, I'm curious the, I had never heard of the term neurodiverse, but it totally makes sense when you're writing about it. Do you wanna tell everyone what that means?
Speaker 3 00:28:12 Uh, it was just the opposite of neurotypical. <laugh> it's somebody who thinks differently and their brain operates differently, whether that is because of, um, autism or Tourettes or bipolar or ADHD. Um, it's just someone who thinks differently.
Speaker 2 00:28:34 Um, my, my research person, Charlene, she is also on here and she had a couple questions, I believe. Charlene, are you?
Speaker 4 00:28:44 Yeah, I'm
Speaker 2 00:28:45 Here. Okay.
Speaker 4 00:28:47 So in the beginning we talked about, you mentioned that it took you several years to do this book. Uh, how many years did it take?
Speaker 3 00:28:56 Well, you know, it was, it took a long time only because I didn't, I put it aside. I, I was doing it in the early two thousands and I did the initial interviews. And then when I couldn't find, it's not like you stand on the street corner and say who's had, who has autism. I just, you know, even when you go into some of the groups now on, uh, social media and you say I'm writing a book, if the moderators will even let you say that, it's not like people are lining up to speak to you. Right. So, um, it was difficult and I did put it aside and I, I think it was probably around 2017 or 2018 that I saw that there was this certified autism travel professional designation. And I had it in the back of my mind, but I was busy doing other things.
Speaker 3 00:29:42 Um, and then I, I had a job that I got laid off from in 2019. Uh, it's important to note that even if I hadn't been laid off, they would've let me go because of COVID a few weeks later. And I said, you know what, I'm going to, I'm gonna write this book. I went into my critique group for, for my fiction writing and they said, what are you working on next? And I said, well, actually, I'm gonna write about traveling with children on the spectrum. And they were like, what <laugh> they? But they're so used to me jumping around between, um, you know, humor and, and romance and then psychological thrillers that I don't think anything, I do surprises them. So they're like, okay, yeah, you go ahead and do that. And so I was going onto online critique groups cause we all went online, you know, when it was the pandemic. And I said, um, okay, I want you to listen to this propo, this book proposal, like, but we're writing thrillers. Why are we listening to this? So anyway, once I got busy with it, it, it, it probably at the end of, um, 2019, then it was just a matter of sending out questionnaires, waiting for them to come in. A lot of it was the waiting, but you know, when I actually did it, it took a year. Yeah.
Speaker 4 00:30:59 Oh, uh, also I was just wondering, and this is just an opinion from you. Do you think our society is getting any better at understanding people with hidden disabilities?
Speaker 3 00:31:13 Uh, you know, I, I say it's either because of empathy or economics, that this is happening, people need to fill beds and I, maybe I'm just really cynical, but I think it's a new market that people are saying, you know, if we learn about it, it's going to pay off. Uh, I think that there is some degree of, there is definitely a push for diversity in the world, whether it has to do with invisible disabilities or mm, yes. Uh, sexual orientation or gender, you know, identification. Everybody is very conscious of this. And I think that goes along with it. And I think that's a great thing. Everybody deserves to travel and the world is waiting.
Speaker 2 00:31:55 I hope. Thank you. That, um, one of the things that I feel that has sometimes started out great and has dropped back, you know, as you said, there's this great push for diversity. And I, I hope the, the hidden disabilities and disability diversity keeps up with all the other diverse things and topics that are out there because I feel like we sometimes get pushed back. Um, and so we're not as always in the, you know, people are already to hear about the other diverse topics, but not always the disability ones. So I really like, oh, go ahead. Were you gonna,
Speaker 3 00:32:35 I was just going to say that, uh, some of the parents were pretty vocal about the fact that while traveling introduces their child to the world and makes them a global citizen, it also introduces the world to the child and saying, this is what this invisibility, this invisible disability looks like. Mm.
Speaker 2 00:32:54 Yes,
Speaker 3 00:32:54 Mm-hmm <affirmative>. And, um, and they look at it as an opportunity to educate.
Speaker 2 00:33:01 I really, you know, noticed when you talk, like you were talking about earlier about how important it is to let kids help plan the trip. And I wonder if you would mind talking a little bit about, like, is a combination of where do you draw the line and where did you draw the line? You know, you wanna be able to do some things too, and you want them to be able to do some things. How do you split that up when you have more inflexibility and flexibility and, and what did you personally do?
Speaker 3 00:33:38 Okay. I wouldn't go anything anywhere about what I personally did, cuz I did none of this. Oh. <laugh>. Which is why it's a really good thing that I wrote the book and I learned about it. I would never, none of this is my story. Um, I read these things, I listened to them and I thought, wow. And I wish I had done that. That would be really good. And I wish I'd had this book when I needed it. So, um, I'm not the one to, you know, to model after. However, I would say that this is a question that comes up a lot. I think it's an excellent question. Some of the ways that you can cater to both and it's also different ages as well as, yes, this is true different abilities. Yep. Um, are vacations that either involve, uh, resorts where the child, the children can be at a kid's club.
Speaker 3 00:34:23 That's been trained to take care of people on the spectrum. Meanwhile, you and your partner can have some quiet alone time. And if you do have a neurotypical child or a children as well, they can be doing their own thing. The same thing is true on cruises, which give you a lot of different options for activities and also sports vacations. And I just did a piece for, um, exceptional parenting magazine. That'll come out in October about a fallen winter travel using sports vacations. So individual sports are very therapeutic because there isn't a social component involved. It's not like a team sport. So whether it's golf or skiing or scuba, or, uh, going to a dude ranch and being around horses, um, you're improving your own abilities and your own techniques without having to deal with social interaction. And that's, you know, therapeutic, meanwhile, a neurotypical child on the trip can also be doing that and, and improving their technique as well. And there's something for everyone and what I just found out and I'm gonna be doing a story on this, um, is there's adaptive school, uh, adaptive, surfing, not only for people in wheelchairs, but also for, uh, people on the spectrum and it's, uh, at least one company that's doing it is Bellagio in, uh, Costa Rica. Wow. And so I'm gonna be writing more about that cuz I think that's really great.
Speaker 2 00:35:53 I wonder, I, I think it's interesting that you mentioned that this is happening in another country. Cause I think people get fearful a little bit, like maybe that country doesn't have the same safety things or carers as we would. Do you have any comments on how or anything you've heard about other countries and how safe they are when they're doing these kind of vacations for adaptive stuff?
Speaker 3 00:36:24 Um, I didn't have a lot of locations that were abroad. I did talk about one of, I believe there was a, a resort in Peru mm-hmm <affirmative> there was a company in Portugal, uh, for the most part, it was domestic. And I know that there were some people who said, when we travel internationally, we make sure that we know somebody in an autism organization abroad, uh, and that we ask our travel professional. If there's a contact, we can have locally. So if anything goes wrong, we have somebody to contact. Uh, a lot of there there's a con there's a chapter in the book as you know, foreign versus domestic.
Speaker 2 00:37:05 Right.
Speaker 3 00:37:06 And, and people will kind of torn. Although people I felt were leaning more to domestic because of the shorter flight and you knew the language right. And the food was more familiar. Uh, but they said that one way to sort of venture internationally would be on a cruise because you're sleeping on the ship at night and they, you know, the language and there's that level of familiarity. But you can also experience the country for little, you know, foreign countries, little bit at a time mm-hmm <affirmative> um, I, I have to say that it seemed to me and I could be wrong because this wasn't my main focus that the countries that were most advanced in dealing with children with the visible disabilities where the UK, Canada and the states. And if I do other books that talk about it, um, traveling different abroad, if my publisher goes for it, um, I, I, I'm curious how much they'll be, because I think the attitudes are not as, uh, liberal in certain countries.
Speaker 2 00:38:10 I will be interested in hearing when you do that book, if you do that book, because
Speaker 3 00:38:16 Call my, you call my publisher,
Speaker 2 00:38:17 Please <laugh> BA book I'm interested. No, because I want, because I, I did know somebody with a visual disability who traveled, you know, in different countries and she very much noticed different, different treatments, different. Um, how, if people even thought she should be doing this by herself mm-hmm <affirmative> so there is, I think you're absolutely right. Different cultures have different ways of dealing with things and not always good and sometimes better. Uh, so it is interesting to, to hear and read about, you have a section about, um, <laugh> things that can happen obviously is all through the book, but about children wandering off <laugh>, which yeah. Eloping, which happens in every family that I know regardless of disabilities, but would you talk a little bit about, a little bit about different ways, how parents can keep kind of track of that?
Speaker 3 00:39:20 Um, I'm just, I'm gonna backtrack for one second, just to give a shout out to the Azos in Spain are actually doing a big push to be, um, to be, uh, friendly to people on the spectrum. And I did a piece on that for insider travel board. So I don't want, that was, I thought something very important to mention. Oh yes. Um, yeah. So moving ahead, how do you keep your kids safe? I think is a big issue, especially when some have a tendency to elope. Yeah. <laugh> and one, one tip that I thought was excellent was sewing a GPS unit it into their clothing. Uh, another parent said to write your phone number, your name and your phone number on their arm and put an, uh, a bandage liquid bandage on top of it. So it won't disappear because of sweat or rain. Mm. Um, and taking pictures of the children every day in the clothing they're wearing for that day. So if God forbid, they, they run away, you, you could at least know what, what they were wearing. It'll be easier to identify them. Mm-hmm <affirmative> there are other tips in there, but I thought those were three of the best.
Speaker 2 00:40:32 I'm going to mention one of my pet peeves, which I have used on and off for various things with my kids, electronics. And I, I go back and forth with wanting them to entertain at times where I need a little downtime or at times where they need to just escape and not, and, and be able to relax. Um, but don't wanna have it so that they're, they don't wanna come out of the electronic world and, you know, be with us as a family. And so how, what are your feelings on that? You know, cause I think electronics get used a lot.
Speaker 3 00:41:13 They do. And I would say that that was the number one tip throughout the book with every parent was like electronics save the day. And if you're concerned that it shows that you're sort of being a little bit more liberal with that during the vacation than you want to be. Uh, I think it's important to define this is vacation time and our routine on vacation time is different than our routine in real life. So we're gonna do things a little differently. Um, so that if you do give them a, a, a, you know, an iPad or whatever, to get through the boredom of an eight hour flight, if that's what you've booked, you know that that's not something that's going to come home with. You, you know, once you get home, it's not gonna be repeated, but this is sort of a special time because you ha I, I think it's really important for 'em to have access to that sort of thing when they're traveling, it's it, you know, even if it's just a way to get through what is really difficult, there are bright lights, you've got fluorescent lights everywhere, right? You've got noise, you've got crowds, you've got new smells. Let them throw themselves into something that they feel comfortable with. Whether it's the world of a television show, they've seen 20 dimes that is on your iPad. Um, it's a feeling of home. And I think it's a way to get through that stress.
Speaker 2 00:42:32 What were some of the tricks of, um, the quote meltdown, like every, I mean, vacations have it, right? Some kid isn't happy about something or something is different than what they thought, and they have a total meltdown for whatever, or they get sick, or, um, what are some of the, the advice you got about dealing with a meltdown?
Speaker 3 00:42:57 You know, most of the advice I took was to do everything you could to avoid that meltdown. So that's what I'm hoping that I've provided with people because you're gonna know your own child and what's going to work for you to calm down the child. Uh, I think the biggest thing was that most people don't travel when they have children on the spectrum or with invisible disabilities, cuz they're afraid of what people are gonna think of them. If the child does have a meltdown, they're scared that people will think they're a bad parent and that the child is abroad and, and badly behaved instead of simply having a sensory meltdown. And so they, they say the number one thing to do is to focus on the child and not worry about what people are thinking and take them to a quiet place and, and do what, whether they need food, they need quiet. Uh, they need their fidget toys, whatever it is that you use at home, but make them the center of your, um, your strategy as opposed to what will people think, you know, that's not going to help. Right. That's not gonna help
Speaker 2 00:43:58 You have a section of packing for peace.
Speaker 3 00:44:01 Yeah.
Speaker 2 00:44:03 Can you talk a little bit about that
Speaker 3 00:44:05 Is, um, sort of like the go-to bag, is that what you're talking about? Yes. Yeah. So, um, what I can do is tell you a little bit about, um, one of the I'm I'm looking as I'm talking to you, I'm, I'm flipping through the book cuz I wanna read, um, what Dr. Ellen Litman she did. Oh, here we go. Dr. Litman had a great go-to bag and, and I, it changes from chapter to chapter mm-hmm <affirmative> with different people's inclusion, but I like hers. Um, she says that when properly packed and managed the go-to bag can save relationships. <laugh> quote, only a parent carries this bag and can use one item whenever boredom, overwhelm or fatigue threatens to rock the boat. So some of the things she suggests include noise, canceling headphones to reduce stimulation and sensory overload, snack size Ziploc bags with low or no sugar foods and discrete units and disposable packaging that are not messy.
Speaker 3 00:45:06 Don't need refrigeration or utensils like popcorn mm-hmm <affirmative> cereal cut up carrots, animal crackers, juice boxes, um, surprises costing less than $10 each given to them in gift bags. So little surprises. That's a, that's a nice thing. Mm-hmm <affirmative> I think silly putty, four color pens, things like that, nothing that makes noise or moves and might annoy others, uh, a change of clothes. And may I add maybe a change of clothes for you too? Because I got vomited on, on my silk shirt taking off from the Caribbean, um, too late to change. So you can be prepared rather than frantic, when things get wetter, dirty art supplies or an Eche sketch, and that's going really retro and, uh, lots of bandaids, Neosporin or medication, uh, you know, approved by your own physician, Benadryl, anti nausea, medication Tylenol. Um, so I know other people add fidget toys, whatever your child likes to do, coloring have, um, a bunch of different activities in that bag that you can bring out and keep changing things around. And again, it's gonna depend on how long the trip is, whether you're on a train or a car or a plane, um, again, cruising <laugh>, it makes life a lot easier. And may I just say autism on the seas puts together cruises for groups, uh, on the spectrum. So great organization to know about
Speaker 2 00:46:32 How can people, pre-order your book again.
Speaker 3 00:46:35 Um, if you go to traveling different.com and that's traveling with one L um, I do have a page that lists some of the places you can order it, you know, all the usual places, you can get it from the publisher, Roman and Littlefield, you can get it from Barnes and noble, Amazon, almost every bookstore has it online. They may not have it on the shelves, but they can order it for you. Um, and again, uh, three different additions. Um, and I would ask that it's great if you buy it, but also order it, ask your library to stock it because then it's available to people who can't afford it as well.
Speaker 2 00:47:09 Yeah. That is a really good point. Um, I use a service called Bard, which reads the books. Maybe it'll be on there eventually.
Speaker 3 00:47:21 I hope so. Um,
Speaker 2 00:47:22 I wonder if you can, well, you talked about in the future that you have been thinking about writing a book about traveling abroad, which I I'm sure that will be interesting if, if you get a chance to do that, but can you briefly talk a little bit about some of your other books?
Speaker 3 00:47:45 Sure. Actually I wanted, I'm glad you're asked because since you, you are in Minneapolis or that area, I
Speaker 2 00:47:52 Am,
Speaker 3 00:47:52 Well guess what's happening in September, September's eighth to the 11th. All the mystery writers are coming to Minneapolis for a convention called voucher con, which is at the Minneapolis Hilton. Uh, and we are, it's a lot of authors. I think there'll be about 1500 of us authors, but there are a lot of fans too. It's mostly a fan convention and, uh, really worth going to, so you might look into it's bou, C H E R C O N. Uh, one of the, the, uh, guests of honor is, uh, I'm gonna pronounce his name, wrong ESPO who wrote the Harry hole mysteries. And that's one of the reasons I'm going, cuz I've always wanted to meet him. Um, but uh, I'm gonna be doing a panel. Uh, a lot of my friends are doing panels and speaking, so that's gonna be really fun.
Speaker 2 00:48:41 Will you be selling your books there?
Speaker 3 00:48:43 Um, the, I won't be selling them, but the bookstore will have them. They have lots of books there. We'll all be signing them.
Speaker 2 00:48:49 Ah, excellent.
Speaker 3 00:48:50 That's really, if you like, I'm such an author groupie that this sort of thing is really exciting for me. <laugh> so if you love books and you like suspense and, and mystery, you'll meet some of your favorite authors there. Um, my books, uh, include, I write under D period M period bar B a R R for my fiction and I, my website's DM bar.com. Uh, I wrote the, the book that's done the best. I think it's got over a thousand reviews right now on Amazon is called saving grace, a psychological thriller, which is kind of a combination of the movies, um, uh, Gaslight and suspicion. Okay. And it's about a woman who has been diagnosed as paranoid and, and uh, her whole life since she was six and she goes off her meds. And when she does, she comes to believe that, um, when her father who's a billionaire dies, her, husband's gonna kill her for the inheritance. Ah, and she wants to save herself, hence the name saving grace. But, um, she doesn't wanna do it and ruin her whole life just in case she's wrong because she might be paranoid. So she has to figure out a subtle way to save her life.
Speaker 2 00:50:04 Ah, okay. This could be a good book. All right, I'll look forward to that one. Great. I'm wondering, did you, did you happen to talk because I'm sure you talk to a lot of people and about how to travel, you know, with kids that are on the spectrum, but what happens when these kids grow up and they become adults and they become parents,
Speaker 3 00:50:31 Um, one would hope that they've gotten a love of travel that they wanna share with their kids. I mean, I, I do talk about older children and some of the travel camps that are, um, that operate and how to travel as an older kid, because a lot of the, um, a lot of the amenities that are in place are really for younger children and they kind of end when the child turns 18, but there were a lot of comments about how to deal with that. But I really, I didn't approach cuz I didn't speak to the children.
Speaker 2 00:51:06 Mm
Speaker 3 00:51:07 Yeah. You know, I spoke to the parents. So one would hope that if the parents have done, done well and, and taught the children to be global citizens, that they'll pass, pass on the torch when they have children,
Speaker 2 00:51:20 That could be an interesting, another chapter though. I could see that, you know, did that happen? And, and if so, and then how did they deal with, you know, because you still have to deal with your kids when you're on the spectrum and what, what do you use? Do you use anything different? Do you, you know,
Speaker 3 00:51:40 There's an interesting podcast called autistic me and he had me on a while back a really interesting man and he's on the spectrum and his kids are too. So he'd be an excellent person to listen to, to hear about raising children when you're on the spectrum and they are too
Speaker 2 00:51:57 Excellent. Um, lastly, I wanted to say you, you talk about having like these social stories that kind of, you talked about that and that kind of prepare a child and I believe your book said you can have ones, there's ones that are already done. Where can people find those?
Speaker 3 00:52:16 Yeah. There is a, um, an app where you can, um, now I've gotta find that too, because, uh, bear with me that's if you get Carol Gray's book on social stories, mm-hmm <affirmative>, then that will work really well for you to learn what they're all about. Um, this, this social story creator and library app mm-hmm <affirmative>, which is available at the apple app store, uh, will let you do social stories on the fly.
Speaker 2 00:52:44 Don. I really appreciate you being with me. This has been a great education and, and sure has, I hope has helped a lot of people. And I look forward to maybe catching up with you if I get a chance at the convention.
Speaker 3 00:52:58 And yeah, that would be really fun.
Speaker 2 00:53:00 September. You say, come September, I be
Speaker 3 00:53:03 It's September. It starts on the eighth and it goes through the 11th.
Speaker 2 00:53:07 Thank you very much. If people want to ask questions or anything, is there any way they can contact you?
Speaker 3 00:53:14 Yeah, they, uh, my I'm on social media either at, uh, on Twitter as traveling D D I F F on Facebook, I'm traveling different. And if you get the book, my email address is in there. If I've opened up the world to you in any way, or if you have a different strategy that I haven't included or a different experience than I have listed, um, please write to me because you may end up on in my blog or you may end up in a new, uh, addition to the book.
Speaker 2 00:53:43 Thank you, Don.
Speaker 3 00:53:45 Thank you so much.
Speaker 2 00:53:46 Thank you for joining disability and progress, where we bring you insights into ideas about and discussions on disability topics. The he's expressed on the show are not necessarily those of KVI or it's board of director. My name is Sam. I'm the host of this show. Charlene dolls. My research person we've been speaking with Don Barkley. Don was the, is the author of traveling different vacation strategies for parents of the anxious, the it flexible and the neurodiverse. This is KFI 90.3 FM Minneapolis and K f.org. If you wanna be on my email list, you may email me at disability and progress. Sam, jasmine.com. And we would love to talk to you. Thank you for listening.
