Friday Apr 29, 2022
Friday Apr 29, 2022
Anne Zachry 00:00 Welcome to Making Special Education Actually Work, an online publication presented in blog and podcast form by KPS4Parents. As an added benefit to our subscribers and visitors to our site, we're making podcast versions of our text only blog articles so that you can get the information you need on the go by downloading and listening at your convenience. We also occasionally conduct discussions with guest speakers via our podcast and transcribe the audio into text for our followers who prefer to read the content on our blog. Where the use of visual aids, legal citations, and references to other websites are used to better illustrate our points and help you understand the information, these tools appear in the text only portion of the blog post of which this podcast is a part. You will hear a distinctive sound [bell sound] during this podcast whenever references made to content that includes a link to another article, website, or download. Please refer back to the original blog article to access these resources. Today is April 28 2022. This post/podcast is titled, "Interview of Dawn Barclay, author of Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse." In this podcast, which was originally recorded on April 1 2022, Dawn and I discuss her book and the challenges that children with various special needs can experience when it comes to going places in the community, including travel and vacations.
Anne Zachry 01:28 Thank you so much for doing this with me. So, you know, just to get started, if you could just introduce yourself, and then tell us about the book you've written and more or less the core issue that you were trying to tackle with it.
Dawn Barclay 01:40 Okay, terrific. So my name is Dawn Barkley and I have written a book called Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse. I have been a travel writer for the past 30-some years. I specialized in travel trade writing. And when I needed a book like this back in around 2008-2009, there wasn't a book like this. So I wanted to write a book that would help the parents of children on the autism spectrum, as well as with mood and attention disorders. What I what I found was that the tips would help in a neurotypical family, as well. Anne Zachry 02:31 That stands to reason. I mean, that's one of the things that research bears out, that when we start creating accommodations for people with special needs, that it turns out that it benefits everybody. I mean, look how people are now using text-to-speech to text when they send their text messages, right, you know, and that was started out as an accommodation. And now just people do it because it's a convenience. And so it just becomes adopted as, "Well, of course. Why wouldn't you use a calculator?" And so that totally makes sense that you would find overlap there that, you know. When you're having to think very deliberately for someone who needs that level of deliberate thought in order to simply access the situation that, you know, it's also going to benefit other people. So that's an interesting finding that you've made.
Dawn Barclay 03:16 Well, I think it stands to reason also that when a child is taken out of their comfort zone, they can be anxious or inflexible, you know, everybody is a little out of it when they are out of their comfort zone. And children haven't experienced those transitions as much as adults ...
Anne Zachry 03:32 True.
Dawn Barclay 03:33 ... they really need ... It's great when people take the time to really explain to a child what's going to happen on a trip, or get them involved in the planning of a trip. So they have a vested interest in being successful. So little things that you can do like showing videos to a kid before they travel, so they know where they're going. It's not all super exciting ...
Anne Zachry 03:54 No, it's all it's all common sense stuff. But it's you know, when we're talking about our special needs kids, these are things we would write it into, like, into an IEP, an accommodation for priming or front-loading, you know ...
Dawn Barclay 04:06 Right.
Anne Zachry 04:06 ... to warn them of transitions ahead of time, to give them a visual schedule so that the ...
Dawn Barclay 04:11 Right.
Anne Zachry 04:11 ... daily routine is predictable. And you know, and it really goes to ... you're right, it's a fundamental human thing, that anxiety is about lack of predictability.
Dawn Barclay 04:20 Yes.
Anne Zachry 04:20 And when you don't know what is coming next, it makes you anxious. And so you know, we all have our ways of dealing with that. And when you're talking about kids, they haven't necessarily develop the repertoire of skills ...
Dawn Barclay 04:34 Right.
Anne Zachry 04:34 ... and certainly as you were talking about a kid with special needs, the speed with which they're acquiring coping skills may not be as quickly as, you know, typically developing kids who may pick them up through observation, whereas some of our kids may need to be explicitly taught.
Dawn Barclay 04:48 Yeah, you're totally on target. And that's what I found. And that's what a lot of the advice revolved around is how to prep the child for each different type of trip. Whether depending on mode of transportation, or whether it evolved through restaurant or camping, or going to a hotel versus a vacation rental, any type of situation they might be put into, "How can we prepare?" and, "How can we smooth the way?"
Anne Zachry 05:16 Yeah, so that you know what to expect, and you're not worried or freaked out and anxious. That totally makes sense. And yeah, and it goes to ecological control, too. And you said something interesting in your email to me when we were setting all of this up about how some kids may need to start small. And maybe it's not even like an overnight trip anywhere, it's like going to a garage sale, or, you know, just going through a novel environment of any kind. And just, it's a skill that needs to be generalized. And so what ...
Dawn Barclay 05:45 Yes.
Anne Zachry 05:46 ... what was, what were your findings with regard to scaling and in scaffolding the complexity of the outings?
Dawn Barclay 05:54 Well, I have devoted a whole chapter to starting small, because I think it's vital to preview what the trip is going to be like, before you actually do it. And you've got a lot of time and money and energy invested in it. And so a lot of it involved social stories, which I would imagine that ...
Anne Zachry 06:13 Yeah.
Dawn Barclay 06:13 ... you're familiar with.
Anne Zachry 06:15 Yep.
Dawn Barclay 06:16 And also videos. But even before all of that, to do something small, like you said, like maybe if you're planning a trip to Italy, you would have some Italian food and talk about currency, or maybe introduce some Italian words, and just try to teach children that there is life that out there that's different than the way they experience it, and just make it fun for them. But also, like you said, like a garage sale, or a trip to the post office, any trip, you can take a child on can be a learning experience, if you couch it that way.
Anne Zachry 06:55 Right.
Dawn Barclay 06:55 I mean, I take them to a bakery that specializes perhaps in you know, like an Italian bakery or German bakery. And there are things that they're not familiar with and little by little get them excited about maybe trying something new. Local festivals in your town might be a good short trip, or a zoo, or an aquarium. Any of those can start the child getting used to something that will involve maybe a tour later on, on a vacation. And you can always refer back and say, "Oh, remember when we went on that tour to the aquarium? You've sort of experienced that."
Anne Zachry 07:32 You can even create a social story about outings in general based on past experiences on a smaller scale like that, and take photos and then, "Okay, well, when we go on the big trip, we're gonna go to other places where we take a tour. You remember the rules for tours, right?" And ...
Dawn Barclay 07:48 Right.
Anne Zachry 07:49 ... and whip out that social story with pictures of them having successfully done it before, and it just reinforces "Oh, I can handle this." So I think that's really smart. Well, that's really clever stuff. Well, so can people ... where can people get the book? Is it on Amazon or other places? Where are you selling it?
Dawn Barclay 08:06 Right now it's on pre-order. It's coming out August 15. But it is on pre-order on Amazon, on the Rowman and Littlefield website, on almost any online retailer. And we're hoping that we'll be in libraries as well. Right now you can preorder in hardcover, or in audiobook.
Anne Zachry 08:27 Okay.
Dawn Barclay 08:27 The ... that ... you can't preorder the digital the ebook yet.
Anne Zachry 08:31 Got it. Okay. That's good to know. Well, we do have our own online store of books, that is really just Amazon, that we use for fundraising for our nonprofit organization and to put useful tools in the hands of the families we serve. And so if you're listed on Amazon, that's easy enough for me to just, you know, include you in there so folks can pre-order, so I'll be sure to do that. And then, yeah, and then we'll have a link for that to the post as well, so that people can just click right on over. In your situation, what you're doing is so elegantly simple. And so, you know, most brilliant things are. Because you're just ... you're whittling it down and distilling it down to, you know, you don't need to overcomplicate this. That's what freaking everybody out is it's overcomplicated in their mind, and it's too chaotic, and you're just, like, bringing it down to a succinct, "No, here's what's going on. Here's the predictable thing that you can expect." And you're taking something that's unpredictable and turning it something ... into something predictable and more easily managed emotionally for ...
Dawn Barclay 09:31 Yes.
Anne Zachry 09:32 ... for people who struggle with lack of predictability for, you know, for whatever reasons, which we all do to one extent or another. But I think that there's very definitely ... I know for my families that have to struggle every summer with, "Do we accept the offer of extended school year services from the school district, or do we send our kid to some kind of camp where they could potentially get more, or do we do a family vacation?" and, you know, "What if we want to do all three? And how do we schedule all of that?" And I think that your, you know, your bottom line point that as long as you're -predicting and you're front-loading and you're priming. And you're thinking deliberately about how you're going to pace everything that it can be done. And very often, you'll have kids who do extended school year to work on things like social skills, or their ...
Dawn Barclay 10:21 Yes.
Anne Zachry 10:21 ... you know, their communication and their behavior. Well, they can also work on those same things if they're in a national park, you know, listening to the park ranger explain how, you know, what to do if you see a bear.
Dawn Barclay 10:35 True, and there are special passes for those with invisible disabilities for national parks.
Anne Zachry 10:41 Yes, there are.
Dawn Barclay 10:42 I talk about how you get that, and I talk about camping as well. If you want to take a small trip that might start with an overnight in your backyard, just so you can test what camping is like ...
Anne Zachry 10:52 Exactly.
Dawn Barclay 10:53 ... and then how to gauge ... how to evaluate a campground ahead of time to make sure it's going to work for you. There's a checklist for that. There are checklists for if you're going to rent a vacation rental, things you should look for.
Anne Zachry 11:06 Oh, that's so huge.
Dawn Barclay 11:08 Yeah. And when you talk about hotels, another tip for starting small is maybe just spending a night at a friend's house with a guestroom ...
Anne Zachry 11:17 Yeah.
Dawn Barclay 11:18 ... the child can get used to just staying in a different location and sleeping, to see how they adapt to that.
Anne Zachry 11:25 That makes a lot of sense, that makes a ... totally makes a lot of sense. Yeah, I mean, it's the baby steps sometimes before you take the large leap.
Dawn Barclay 11:33 Yes.
Anne Zachry 11:33 And, yeah, and it's scaffolding, I mean, when you're when you're talking about instruction, when you've got a child whose functioning below grade level, you just don't hit them full force with the grade level content. You back up a little bit, and you teach the prerequisite skills that they need to master that might be at a lower level. But if you don't know that, the bigger thing is not going to make any sense, you know?
Dawn Barclay 11:55 Sure. Of course.
Anne Zachry 11:56 And so it's you have to take those baby steps and work someone incrementally towards their comfort level, and where they're at a place where they can master something new. And that's really what, you know, it's the same concept just applied to, you know, the real life situation of just going out in the world and participating. And, you know, it's not really about the academics per se, but the concept still applies to learning how to access the world around you. So I think that's, you know, obviously, it's a very transferable concept. And you've ... it sounds like you're applying it in a really smart way. I'm excited to see your book now that you've told me all these awesome things and planning the things that are in it, because I'm telling you, I have families who are like, "We don't know what we're going to do this summer." And a lot of families who are just like, "We're just not going to do anything, because it's too hard to figure it all out." But if there's something ...
Dawn Barclay 11:56 That's so true.
Anne Zachry 11:57 ... yeah, there's something they can use that will help ... because I think for a lot of moms in particular, it tends to be the case that moms are the ones saddled with the planning ...
Dawn Barclay 12:53 Yeah.
Anne Zachry 12:53 ... and the logistics, and getting everything together and organizing everything. And just the thought, I mean, I can feel my own heart palpitating. You know, I remember doing Girl Scout events and having to get all those things together. And I know what kind of anxiety is around being the planner.
Dawn Barclay 13:09 There's been a study where they interviewed 1000 families and, of the ones with special needs, 93% didn't travel but said that they would if they knew where to go and how to handle it.
Anne Zachry 13:21 Exactly. No, that totally makes sense. Well, I think, you know, this is a huge service for the community of families that we serve, this is definitely information that families need. So I'm excited to share it all out and see what the response is to it once it comes out. I mean that right now it's preorder so no one's it's not available for review at the moment. But it'll be exciting to see what people say once they've gotten a chance to look at it. How have the preorders been going? What kind of feedback have you been getting from people now that you're going around promoting it?
Dawn Barclay 13:51 Well, I don't get to see the preorder numbers. However, we did send it to some people ... early endorsements for the back cover. And I was very, very happy with what people had to say, especially people who had written books about autism, and they were very positive about it. So that made me feel good, because the only people who had really read it before that was my agent and my publisher ...
Anne Zachry 14:14 Right, on.
Dawn Barclay 14:15 ... you know, I really hadn't heard from the community. And when I heard from them, and they felt that this was a very helpful book that made me feel great, because if I get a letter from someone in the future, who's read this book and said, you know, "Because of what you wrote, we traveled and thank you because you opened up the world to us," that will have made it all worthwhile for me.
Anne Zachry 14:36 I totally understand that. I mean, that's as advocates, that's what we're doing is, we're in the business of opening doors for people who otherwise they wouldn't open for, and it is. It's incredibly gratifying to realize that, you know, even if it's something simple, but certainly when you put forth this kind of effort to know that other people are benefiting from it. Yeah, it's very ... it's just, you know, you're reason to get up in the morning. I get it, I totally get it.
Dawn Barclay 15:04 It's true, and there's so many people out there who don't know what the resources are, like there are certified autism travel professionals out there who have dedicated themselves to being able to plan trips for families ...
Anne Zachry 15:17 Holy Moly!
Dawn Barclay 15:17 ... on the spectrum, and there are different certification companies like IBCCES, and that stands for the International Board of Credentialing and Continuing Education Standards.
Anne Zachry 15:31 Right.
Dawn Barclay 15:31 ... IBCCES, they created the Certified Autism Centers, and they go around certifying and training different venues to know how to work with the autistic population. And that's so important, because then you have certain resorts who have dedicated themselves to training their staff to helping.
Anne Zachry 15:50 That is so cool. Well, it's interesting now that you're saying all of that, because separate from the work that we do through our advocacy organization, I also have a separate program that I created that we operate, called the Learn & Grow Educational Series, which is part of the ecotourism circuit, and we address food security and sustainable living instruction through project-based learning and modeling. So online and in-person teaching, and we've actually got a teaching garden in a space that we use to do that kind of instruction. And that's something that actually I'd be interested in doing is getting us certified that way, because I've already got the master's degree in educational psychology, I already serve people on the spectrum every day, I understand how to apply the science but having a certification that says, "Yes, Anne knows what she's doing," I can see the value in that as well. So that's really interesting.
Dawn Barclay 16:42 Yeah, I can certainly tell you who to speak to, because not only does IBCCES do it, sorry, I'm tripping over myself ...
Anne Zachry 16:50 No worries.
Dawn Barclay 16:51 ... there are other organizations that are also starting to certify, like the Champion Autism Network, there's Culture City, there's Sensory City, just a number of people who are taking up the cause. But of all of them, I believe IBCCES has been around the longest, and they have done the most work for the certifying ...
Anne Zachry 17:10 Right.
Dawn Barclay 17:10 ... if you go to autismtravel.com, you can download their most recent list their catalogue of different locations. And what I have done is combined a lot of what they've done with other autism friendly resorts and attractions. And you have to be very careful whether it's certified or autism-friendly, because these things always change ...
Anne Zachry 17:34 Right.
Dawn Barclay 17:34 Certifications change. In fact, the new catalog just came out in there are some that are not in my book. And that drives me crazy. So I'll be running the Traveling Different blog that will update my book. That's the only way I can live with myself.
Anne Zachry 17:50 I totally get it. Yeah, because once it's printed, you're like, "Oh!" and then things change.
Dawn Barclay 17:56 "Ahh! I don't have that one." But what's also important is, and I mentioned that several times in the book is if you see something that says "autism-friendly," you have to do your due diligence. You have to call them or write to them and find out exactly what that means. What is their training entail? What have they actually done? Because it means different things to different suppliers, and it doesn't necessarily mean that it will be right for you. And also then you might be autism-friendly on the weekend, or on certain days in the month. That doesn't mean that they're always gonna have like autism-friendly days or low-sensory days at a museum every day.
Anne Zachry 18:33 Right.
Dawn Barclay 18:34 It might be one Saturday, a month. You have to be careful.
Anne Zachry 18:36 Right. No. And I know that in the greater Los Angeles area, and that the museums and the different aquariums and things that they'll have those types of events, but you're right, it's scheduled. And it's only like once a quarter or once ... Yeah, so you have to, it's not like they're just going to accommodate you like that on the fly necessarily. So ...
Dawn Barclay 18:37 Right, you have to make sure that it's going to happen while you're there. What I've also done in the book that I think it was very important I thought for me is I think most people with children on the spectrum know that they can obsess about a specific topic for up to 16 hours a day. It's their life.
Anne Zachry 19:13 Yep.
Dawn Barclay 19:13 So what I've included is a whole list of museums for special interests that are not necessarily autism-friendly, but they're going to be autism-friendly for your child because your child is going to be so thrilled to be there, that it might help overcome other obstacles ...
Anne Zachry 19:29 Yeah.
Dawn Barclay 19:29 ... like flourescent lighting or other sensory issues because I think there'll be so excited that here ... like I talked about one child that was ... I don't know if they were in Montana or somewhere in that area ... and there was a mustard Museum, and the kid was crazy about mustard and only talks about his how his parents took him to this museum. So museums all over the country. So say you happen to be going to Cleveland and your child is interested in something you know some oddball ...
Anne Zachry 19:58 Yeah, area of interest. Yeah.
Dawn Barclay 20:01 ... and that would turn the whole business trip into a really memorable trip for your child because you engaged in their interests. And the trip has to be child-centric. And once you get, you know, that idea that we're going to build it around the child, I think everything starts to fall into place. So I do include a very large chapter about that, as well as ways to find other museums.
Anne Zachry 20:23 That is so cool, this is really interesting, I'm really looking forward to seeing the book when it comes out. Thank you so so much for tackling this, because you're right, this is ... this has been an area sore need for a long time. And you do have to have that blended knowledge of the travel industry and be a travel insider to be able to speak to what all these different places can do and what your options are, and how you go about asking for those kinds of things. But you have to understand what the needs are in the first place to know that you need to ask, and so, you know, you're in this nexus between the travel industry and the disability community, you know, making those connections between where the needs of one overlap with the abilities of the other to serve. And ...
Dawn Barclay 21:11 Well, and it does take a village right?
Anne Zachry 21:11 So, but you know, it also takes somebody to be that person who ties it all together and, you know, puts it down in writing for everybody to use in the, you know, your role is very significant in that because even though all of these people may have possessed all of this disparate knowledge, it needed to be distilled down into something that the lay public could access and make use of, and that's where you basically act as a scribe and made that happen. So I think that that's a gift to be able to take what you already know, and connect with the ... with people who are going through these unique circumstances, and be able to create a tool like this. So this was really exciting stuff. Thank you so much for doing the work.
Dawn Barclay 21:11 And I thank goodness for the people who contributed to this book, because this isn't my story, this is the culmination of over 100 interviews with parents, with certified autism travel professionals, with health professionals like Tony Atwood and Dr. Ellen Lippmann, and different organizations, and different advocates and allies, and all of them taught me so much. And that's what ... I couldn't have written the book without them.
Anne Zachry 21:39 Thank you.
Dawn Barclay 21:39 I learned so much. I mean, I would have never known that there were therapeutic aspects to diving vacations, or to golf vacations, or to skiing, and there's so much out there for this population now, because everybody is trying to be so much more inclusive than they were before.
Anne Zachry 22:35 Right.
Dawn Barclay 22:35 So it's just fascinating that you can go to a dude ranch, and there are ones that will cater to your child, or you can go to rent a house boat, we should really know the safety measures that are involved in that or if you want to rent a yacht, because, you know, if you rent a private boat, you certainly have enough room to bring along friends or family that can help take care of the child. So it's not only on the parents.
Anne Zachry 23:01 Right, no that's a really good point, too.
Dawn Barclay 23:04 ... all kind of gels together.
Anne Zachry 23:06 That's really interesting. Now, I will say that a lot of our families are not going to be renting yachts anytime soon. I mean, a lot of folks, you know, what isn't appreciated very often is the added expense that comes along with parenting a child with special needs, and that, you know, even a middle class family can find themselves struggling just because of those added expenses. So I think that the ... you also, you know, talking about these other options, and that where you start small at a more local level, still builds the skills and still gives them that exposure, even if you know, we're not going to go to Europe this summer, but we're you know, maybe we're gonna go, you know, we're going to drive for six hours and go stay with aunts and uncles in another part of the state, you know, and, and so whatever the scale of it is, really, it comes down to the experience for the child and the predictability of it. And having your ducks in a row in terms of, like you said, planning it and making a child-centric plan about how you're going to handle your trips, which I think is really smart. I mean, it's not about saying that any one person is more important than everybody else; it's just saying that this person's needs are going to be the most demanding ones we need to accommodate, and at minimum, we need to make sure we take care of x, y and z. And then we can take care of everything else around that and you know, you get those those the hardest things you're going to have to accommodate out of the way and then everything else is easy going forward. So ...
Dawn Barclay 24:32 Right, and I agree with you, not everybody can afford a yacht. I certainly can't. I do spend a lot of time talking about car travel, bus travel. I talked about how the Autism on the Seas Company has a scholarship or a grant for people who can't afford to sail on their own ...
Anne Zachry 24:51 Right on!
Dawn Barclay 24:51 ... if they want to take advantage of an autism cruise. I do talk about how to handle restaurants and how to do camping, so I do include all that information and I'd like to think that this book can help people from, you know ...
Anne Zachry 25:05 From across ...yeah, across the socio-economic spectrum.
Dawn Barclay 25:08 Yes.
Anne Zachry 25:08 Yeah, because you were talking about camping and things like that. And I'm thinking to like, even if you do make it to Europe, maybe you're not going to rent a car, you're going to be using public transportation.
Dawn Barclay 25:17 Right.
Anne Zachry 25:18 And you know, and you're gonna be using a Europass, or whatever. And so, yeah, so there's a lot of things that have to be factored in. And everybody's situation is unique. And yet there's these things in common that, you know, these unifying factors that if you just attend to these details, then all of the things that are unique, will still be manageable. So ...
Dawn Barclay 25:39 And also, like, how to keep safe, how to make sure you don't lose your child, and safety measures to take. All information like that. That's so important to have.
Anne Zachry 25:47 That's so huge. Absolutely. My goodness! Well, this was just a very enlightening conversation. I really appreciate you sharing all of this with me. I'm looking forward to sharing your information with everybody and hearing what they have to say about it.
Dawn Barclay 26:01 Absolutely. My pleasure. Thank you so much.
Anne Zachry 26:03 You're so welcome.
Anne Zachry 26:04 Thank you for listening to the podcast version of interview of Dawn Barclay, author of Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse. KPS4Parents reminds its listeners that knowledge powers solutions for parents and all eligible children, regardless of disability, are entitled to a free and appropriate public education. If you're a parent, education professional, or concerned taxpayer, and have questions or comments about special education related matters, please email us at firstname.lastname@example.org or post a comment to our blog that's info at "K" as in "knowledge," "p" as in "powers," "S" as in "solutions," the number "4," "parents," P-A-R-E-N-T-S dot O-R-G. We hope you found our information useful and look forward to bringing more useful information to you. Subscribe to our feed to make sure that you receive the latest information from Making Special Education Actually Work, an online publication of KPS4Parents. Find us online at KPS4Parents.org. KPS4Parents is a nonprofit lay advocacy organization. The information provided by KPS4Parents in Making Special Education Actually Work is based on the professional experiences and opinions of KPS4Parents' lay advocates and should not be construed as formal legal advice. If you require formal legal advice, please seek the counsel of a qualified attorney. All the content here is copyrighted by KPS4Parents which reserves all rights.