Interview of Dawn Barclay, Author of Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse

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 info@kps4parents.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.

Interview of George Bailey, President of ZPods


Transcript of Interview:

Anne Zachry 0:00
Welcome to “Making Special Education Actually Work,” an online publication presented in blog in 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 reference is 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.

Anne Zachry 0:58
Today is March 31 2022. This post in podcast is titled, “Interview of George Bailey, president of ZPods.” In this podcast, which was originally recorded on March 23 2022, George and I discuss the impact of sleep disorders and related conditions that interfere with children’s access to education and the research being done into his company’s sleep solutions for children with autism, sensory integration disorders, insomnia, anxiety, and other disorders that can negatively impact their sleep quality.

George Bailey 1:29
Hi, I’m George Bailey, and I’m president of ZPods. We’re a startup in St. Louis, and we are developing sensory-friendly beds for autistic children and others who have severe sleep problems that are caused by sensory issues. So, our goal is to help out as many of these kids as possible. We enjoy it … and, uh, yeah.

Anne Zachry 1:54
That’s very cool. And I know that when I was emailing with you guys back and forth, when we were coordinating all of this, you know, my first question was what kind of peer reviewed research do you have behind what you’re doing? Are you doing any kind of studies? And, I understand that, not only are you … because you were just telling me that you’ve got a regional center here in California that’s already funded your product for one of its consumers, and they’re not going to just jump on something unless there’s evidence to back it up. But I know that you guys are also participating in some evidence … some studies and whatnot to collect the hard data that speaks to not just whether or not it’s effective, but what makes it effective. How is it effective? And what is the science that underpins what it is that you’re doing? And so I was hoping to get more information about that from you guys, in terms of what’s … what’s the research currently being done on the efficacy of your solution?

George Bailey 2:44
It’s such a good question. And, you know, I was just telling somebody earlier that one of the reasons why it took us a while to get around to really focusing on autism … we were thinking about, like, you know, “Where we should go?” … is because when people would tell us, you know, look at autism, early on, as we were trying to find an application for sleep pods that were great. We were bringing it from China, I balked at it. I’m a father of five. And I have two kids on the spectrum. And I thought like, “Ah, come on guys,” … like, parents of autistic children get all sorts of stuff.

Anne Zachry 3:19
Oh, yeah, for sure.

George Bailey 3:20
… business. Yeah. I don’t want business on playing on people’s hopes and stuff like that. And so I, initially when I approached him, and said, “Okay, I want to take this serious, because we’re getting that feedback that says we should do this.” But I started talking to experts, and with parents of autistic children, and interacting with autistic children of my own. And the feedback was a resounding, “Please try it.” And I think that … so, I’m going to answer your question two parts: I think that there’s an intuitive evidence and I think that there’s going to be actual evidence and the intuitive of evidence is kind of based on all of our collective experience.

Anne Zachry 3:59
Right, the anecdotal data. Yeah.

George Bailey 4:00
Yeah, yeah. There’s some heavy anecdotal evidence that’s seems to say, like, these children really value … they have the same needs as if … in that there’s, kind of, like, one type.

Anne Zachry 4:11
Right. There’s no monoliths, but, yeah, kids with similar needs. Yeah.

George Bailey 4:15
Yeah. These kids tend to love sleeping in the closet, under the bed, up against the wall, and … there’s something that’s like it. And there was enough there for us to see, so there was something there. But, all of the things that, kind of, come together out of this bed, it was not built for kid’s processing, initially. It was just, like, an enclosure with some LED lights and some fans and a mirror, and all of those elements, when combined together, seemed to form this really fantastic environment. And if you were to take any one of those things, separately … study this out and find some interesting things. Like for example, when you enclose somebody, then you give them darkness … well, darkness is heavily prescribed for good sleep hygiene.

Anne Zachry 5:06
Right.

George Bailey 5:06
… darker or something like that. It’s separate, but the enclosure itself provides almost like a sensory …

Anne Zachry 5:12
Right.

George Bailey 5:13
And, then, LED lights, you know, again, heavily used in the sensory, or special needs community …

Anne Zachry 5:22
Right.

George Bailey 5:22
Heavily used. And so all of these things … Now, where we’re at with clinical trials is that we’ve been in touch with the folks at the Thompson Center for Autism and Neurodevelopmental Disorders.

Anne Zachry 5:27
Um-hmm.

George Bailey 5:37
The lead clinician for this project is going to be Dr. Christina McCrae, who is published widely on autism and sleep, and that was a must. We needed somebody to do … to ask the right questions …

Anne Zachry 5:48
Right.

George Bailey 5:49
… not do what we say. I am trying my best to remove myself from the academic questions as much as possible to just, kind of, stand back and let them do their work.

Anne Zachry 6:01
Right.

George Bailey 6:01
Because, it needs an honest assessment. That was my stance from the beginning, is that, if were going to go into this, here’s how we’re going to look at it: We’re going to find out what’s true. And what’s true may not be as flattering as what we’d like, or maybe it’ll be moreso. Maybe it will be better than, you know … maybe we’re not being optimistic enough? I don’t know.

Anne Zachry 6:20
Right.

George Bailey 6:21
… but if we learned that “X” works … and we will continue to do facts …

Anne Zachry 6:25
Exactly!

George Bailey 6:26
… if we can say, if we learned that, “Y” doesn’t, then we will also chalk that up to success and say we’re going to stop doing “Y.” And if we learned that we should probably … there’s an implication here that we should be trying “Z,” then we’re going to start pursuing that. We’re not …

Anne Zachry 6:43
Right.

George Bailey 6:43
… because I think that it requires that kind of mentality to really test this out. So …

Anne Zachry 6:49
Well, yeah. I mean, any kind of solution requires that kind of mentality. That’s just common sense. Which, you know, we also call scientific method.

George Bailey 6:59
It’s hard to do this in our community. When you’re an entrepreneur, you’re hustling and you’re getting out there. You’re constantly … you just gotta, you know, sell, sell, sell, and you got to pitch your brand, bla bla bla. But you got to break out of that sometimes and just listen to what is being told to you.

Anne Zachry 7:19
Right.

George Bailey 7:19
And sometimes even … sometimes that’s hard, but you put your heart and your mind to it and your … and your money, as well. It’s very difficult, but at the same time, if you listen, then the rewards in terms of, kind of, like, personal satisfaction that you are doing right by the people that you’re trying to serve … Pretty tremendous!

Anne Zachry 7:40
Yeah, and I have to agree with that. Well, and what you’re making me think of is that the psychology of sales and marketing is the exact same science as the psychology of good instruction. It’s … it’s all the same thing.

George Bailey 7:52
Yes!

Anne Zachry 7:53
It’s all the same thing. And so, what you’re doing is … when you’re doing … there’s the, you know, the snake oil salesman, kind of, “I’m going to sell ice cubes to Eskimos and get people to part with their money for things they don’t need.” But then you also have consultative sales, which is responsible sales, where you’re actually … you’re not out there selling, you know, product features, you’re out there selling solutions to people’s problems. And you’re … you’re approaching it from the standpoint of, “What is your situation and do I have something that will help you?” And if you do, then what you’re really doing is you’re not selling the product, you’re selling the solution, and the product just happens to be the means to that end. And that’s a more authentic thing. And you build relationships with people. And it requires you to listen to what their needs actually are. And this is what they’ve been, you know, all these sales classes, they have people take, this as the message, and this is what you’re doing. But it’s also exactly the same thing as when you’re trying to identify an IEP solution for a kid. You’ve got to pay attention to what’s going on with the kid as a unique individual and match the solution to the actual need. And so there really is no difference between consultative selling and IEP development when you’re talking about matching solution to need. And …

George Bailey 9:11
I love that perspective. And, you know, it’s interesting, because I found myself in a few situations where I’ve actually explicitly told the parent, “I don’t think we’re a good fit for you.” And I feel like … it may feel like a, kind of, short-term security to be able to say, like, “Yay!” You know, “We sold another bed.”

Anne Zachry 9:30
Right.

George Bailey 9:31
But, it’s a long term hurt on the brand. If you really are trying to establish yourself, it’s like, we don’t make scientific claims. No matter what, here’s the crazy thing. It’s like no matter how many times I say that we are not making medical claims …

Anne Zachry 9:48
Right.

George Bailey 9:48
… there will be parents who read onto what we’re our saying medical claims …

George Bailey 9:53
Right.

George Bailey 9:53
… because hope springs eternal and they’re looking for a solution and this sleeplessness … sleeplessness of their child is causing them genuine distress.

Anne Zachry 10:05
Right.

George Bailey 10:06
When a child’s not sleeping with the entire family has suffered.

Anne Zachry 10:09
Exactly!

George Bailey 10:11
And so you have to be really careful to kind of repeat that again and again. But at the same time, there’s the kind of the other interest … is that you also want to make sure that you get it out there, because you rely on those early adopters who are like, really like, they’ll take a risk.

Anne Zachry 10:28
Right.

George Bailey 10:28
I love those people. I am not an early adopter, okay, I wasn’t on Facebook until 2011. I’m the last kid on the block buy the new thing. But the early adopters, one of the things whether they succeed or fail with your solution, they give you information, that it’s very valuable, you have to respect that …

Anne Zachry 10:52
Absolutely!

George Bailey 10:53
… going back to your sales mentality, I think you’re right, I don’t think that it’s always true. I’ve seen salespeople, huge tricks of the trade that I personally find to be manipulative …

Anne Zachry 11:07
Right.

George Bailey 11:07
… but I used to be a foreign language instructor …

Anne Zachry 11:12
Hmmm.

George Bailey 11:12
… for nine years. And it was really fun. I loved that time in my life, where I got to teach, and there was always, kind of, the part of explanation.

Anne Zachry 11:24
Yep.

George Bailey 11:25
You know, where you had to learn to, kind of … and a lot of the explanation that I did was kind of fun, it’s a little bit off topic, but you know, I taught Mandarin Chinese, first year. And that was very fun. And, the way that we would explain things … we were told by the teacher that we worked with, I was a teacher’s assistant that also taught courses, you’re not going to use English to teach Chinese, you’re going to use Chinese to teach Chinese.

Anne Zachry 11:49
Right.

George Bailey 11:50
So, there was a lot of need to be able to be empathetic with my audience. When I was looking at 20 of my students saying, “Wǒ” (我) which is the Chinese word for “I” or “me,” that I’d have to see, are they really getting it? And I think that with the art of sales, you have to really listen to people.

Anne Zachry 12:10
Yeah.

George Bailey 12:11
And the better you are at listening to people and their needs, I think the better you’re going to convey, like, that … that you really care and that you’re ready to solve a problem and not just, like, you know, get … sell snake oil.

Anne Zachry 12:24
Right. Well, again, I relate it back to … everything back to IEPs, because if you think about the IEP process, it’s the same thing. You can’t write an IEP, an individualized program of instruction for somebody, unless you listen to what their needs actually are. There’s not a one size fits all. That’s called Gen Ed.

George Bailey 12:45
Yes, yes.

Anne Zachry 12:46
You know, and, and so, you know, general education is the assembly line. And special ed is the custom shop.

George Bailey 12:55
You know, I really agree. We’ve worked with some IEP experts with my oldest son, Joseph. And I was always really touched. When I felt like they were taking the time to listen to me. And when they were really looking at my son and his specific needs, and so that’s, you know, it’s a labor of love. And it’s really critical to look at each child as an individual.

Anne Zachry 13:20
And, it’s required by law for that reason.

George Bailey 13:23
Yeah.

Anne Zachry 13:26
So yeah, so I mean, I realize there’s overlap, you know, all these processes and procedures that everybody’s using … it’s interesting that no matter what outcome you’re trying to achieve, very often there’s a similar formula to how you make it happen. And there’s always a needs assessment. And then there’s a matching of solutions and need.

George Bailey 13:44
A situational analysis.

Anne Zachry 13:45
Yeah. And so, I mean, it’s, again, you know, it’s common sense, otherwise known as scientific method. But, well, this is very interesting. So what, what kinds of … what kinds of responses have you gotten from the families who are using the ZPods?

George Bailey 14:02
So, we’ve got both the responses that have been highly favorable, and some that have been like, “Meh,” you know, but even with that, what we’ve never gotten .. what we’ve never heard from a single parent is, “My child does not like your bed.” We may have gotten responses like, “Your assembly instructions need some real clarity and they’re very inconvenient,” like, you know, we’ve gotten that …

Anne Zachry 14:25
Right. Technical stuff.

George Bailey 14:27
… from the parents, but the one universal is, “Our kids love, love your bed.” And then we’ve had another set of children where it’s like, minimalist a fact that they love it; they use it as a chill space. Right?

Anne Zachry 14:40
Right.

George Bailey 14:41
And then we’ve had a very large number of parents and again, I hesitate to get the numbers. I’ll give you what numbers I can, to be as, kind of, precise as possible. And we’ve worked between … with between 60 and 70 families, okay. And that number is always increasing and that there’s been a very high degree of customer satisfaction and a consistent feedback from families like, “Wow, my kid’s doing things that I’ve never seen the kid do before,” We’ve had, for example, one of my favorites was Dawson, a six-year-old boy, who, after a week of sleeping in our bed, the … first of all, the immediate result was that his sleep jumped from roughly two or three hours a night to about eight hours at the very least.

Anne Zachry 15:28
Praise God! That by itself is worth it.

George Bailey 15:30
Yes, that by itself is already worth it. But then, the, kind of, double validation came a week later, when the school teacher for Dawson pinned down the mother and said, “What are you guys doing different?” Because that was unsolicited.

Anne Zachry 15:49
Right.

George Bailey 15:50
One of the things we have to be really careful about as we study this is that parents who take the time and the trouble to purchase one of our beds have a bias towards believing that they made a good decision.

Anne Zachry 16:03
Right.

George Bailey 16:05
And, I don’t want to manipulate that. We want them to be happy, naturally. We want them to feel like they made a good decision. But I also acknowledge that bias that they have. So, when it comes to the third parties that come in and say, “Wow, I’ve seen some really, really great improvement,” … but we’ve seen that a fairly large number of cases where we’ll have like an OT say to parents, “This bed has been a game-changer,” things like that.

Anne Zachry 16:32
Right.

George Bailey 16:33
And, in Dawson’s case for the teacher to come up without knowing that there was a change in his sleep, but just saying, “This kid is more alert, more focused.” And, incidentally, in his particular case, there was talked amongst the parents about the possibility of institutionalizing him.

Anne Zachry 16:50
Right.

George Bailey 16:50
Because it was that bad.

Anne Zachry 16:52
Yeah.

George Bailey 16:53
And, Dawson’s not a bad kid. We know that. But, anybody who is under-slept so severely is going to have severe behavioral problems.

Anne Zachry 17:05
Right.

George Bailey 17:06
Sleep has incredible value for for the brain, for the body, you know, for cognition. it’s just …

Anne Zachry 17:14
… it’s neurologically necessary.

George Bailey 17:17
Yeah.

Anne Zachry 17:17
And it’s a … it’s part of human survival. You have to go through that or you will … it will make you literally ill. And …

George Bailey 17:25
And it sounds kind of funny, like trying to sell sleep. We’re not selling sleep, per se; it’s that we’re selling something that we hope will cause more sleep. But it’s almost a little bit kind of funny to hear myself, like, “Aww, now I’ve become one of those sleep preachers!” I keep reading these books about sleep, and I’m, like, these guys are all … dealing with sleep and saying the same thing. It’s almost like talking about water.

Anne Zachry 17:48
Right.

George Bailey 17:49
“Did you ever see the rejuvenative powers of water? It’s incredible!”

Anne Zachry 17:56
I know you … you really have hit on a very fundamental, visceral, survival-level kind of need that sadly enough in our society is neglected. And, you know, and you’re … you’re looking at, “Okay, how do we address this fundamental survival need, and these individuals who are struggling with this who … and are compromised?” And so I think that … I mean, I’m always excited to see new stuff. And anecdotal evidence is always a sign that, okay, we need to look into this a little bit more deeply to see, you know, what makes us you know, for real, so I’m always happy to hear that, you know, with stuff like this, the early adopters are like, “Oh, no, this seems to be doing a thing.” And all of it makes sense. I mean, logically, and intuitively, you’re right, it all logically makes sense. But it’s still going to be interesting to see what kind of research data comes from it and you know, … maybe some grad school student will latch on to it and want to write a paper or something. You just never know, and so …

George Bailey 18:54
And, that’s what we’re encouraging constantly. It’s that we want it to be subjected to scrutiny, empirical data, empirical study and and we also want to urge all companies out there that are trying to provide a solution for the autism community to find ways to get at third parties that are impartial to come in, because you only stand to gain …

Anne Zachry 19:19
Right.

George Bailey 19:20
… you may not hear what you think you hear; you may not hear what you want to hear, but you are going to hear what is going to be beneficial.

Anne Zachry 19:28
Right. Once you know what you’re working with, you can say, “Okay, well this is what I know I can do and I’m gonna stay in my lane and do only that,” you know? “I’m not gonna try and be everything to everybody,” and there’s … there’s a lot of value in that …

George Bailey 19:49
And, we don’t want that, either. You know, there’s this temptation to kind of overplay it, like, “Hey, you know this is going to do “X” and “Y” for the kid’s autism,” but you don’t know, it’s gonna be different for every kid, and it’s going to … whatever your child needs is going to be a very large combination of things. We are one part of a very, very complex puzzle of sleep …

Anne Zachry 20:03
Right.

George Bailey 20:04
There are physiological components to it, you know, some people can’t sleep because like internal parts of how they function.

Anne Zachry 20:13
Right.

George Bailey 20:13
Others that they’re … it’s just a matter of really good sleep hygiene. Some have a more selective sleep hygiene, which is kind of where we play …

Anne Zachry 20:20
Um-hmm.

George Bailey 20:22
… where they really need the aspect of enclosure, I don’t need to be enclosed in something to feel safe.

Anne Zachry 20:30
Right.

George Bailey 20:31
You know? Then again, I like being enclosed in my home, in my bedroom. You know? And then in my wife’s there. Those are some of the things that add to my own personal satisfaction …

Anne Zachry 20:42
Right.

George Bailey 20:43
… where I can calm down and initiate sleep. But some kids, they just thrive on …

George Bailey 20:50
And, you’re making me … the word “proximity” pops into my head, where … proximity to the wall, you know? How close are the walls to me? As … you know, if you’re … if you feel safe within your house, you’re still within a structure. But if that feels too spacious, and you need to have the walls closer to your physical presence to really feel that … that enclosed feeling, then I … then, yeah, that would, to me, say that some individuals need the walls in closer proximity to their physical beings than others. And, it again goes to everybody falls on a spectrum of some kind in every aspect of development one way or another. And that’s … this is just the one that you happen to be dealing with. And …

George Bailey 21:37
Yeah, some kids, actually … so our bed, it fits a twin size mattress; it’s about three feet tall on the inside. It’s pretty big I can I can sit up, I can kneel down and I’m barely touching my head.

Anne Zachry 21:51
Right.

George Bailey 21:52
So some kids feel comfortable in that, and they feel it. And I’m wondering, this is now I’m, kind of, theorizing that I wonder if this would fall under the proprioceptive sense. You know, where you can kind of sense that closeness to something without it being a touch sensation.

Anne Zachry 22:10
Yeah, because proprioception is like your the sensation of your body moving through space. And, yeah, and pressure and those kinds of things. Well, and I’m wondering if you’re enclosed inside of the pod, how much of it is air pressure? And if there’s an inner ear vestibular piece to it as well?

George Bailey 22:29
Yes, yes.

Anne Zachry 22:30
That’s curious.

George Bailey 22:31
… really comfortable, that other people feel like all they need around them are the warehouse walls of a Costco.

Anne Zachry 22:37
Right.

George Bailey 22:38
You know, something very large, they’re fine with that, you know? So …

Anne Zachry 22:43
Well, and it makes you think of our kids on the spectrum that struggle with personal space, and getting all up in people’s faces, and they don’t understand that other people have a personal bubble, and you need to step back a few.

George Bailey 22:54
Oh, that’s a great comparison!

Anne Zachry 22:55
And I’m wondering how much of that is inter played with what you’re dealing with? That’d be an interesting line of inquiry to explore.

George Bailey 23:01
Yeah.

Anne Zachry 23:03
Yeah. Well, you know what I’m thinking of to is here in California, which I know is unique, because not most states don’t have anything if any other states do. I’ve not heard of any other states that have it. But here in California, the Department of Education operates what they call Diagnostic Centers. And there’s three of them. There’s one up in Northern California in Fremont. There’s one in the central part of the state in Fresno. And then there’s another one down in LA for … that covers Southern California. And what they do is they’re … they’re funded out of the State’s federal special ed dollars and state special ed dollars, skimmed off the top, and then all the rest goes to the public schools. And so what Diagnostic Center does is they conduct evaluations of students who their local education agencies are having a heck of a time, even going through all the normal assessment procedures, trying to figure out what to do for these kids. And what they do, it’s an on-site thing where they … the family will go and the State will put them up in a hotel and give them coupons to, like, Soup Plantation, you’ll never want to eat there again by the time you’re done … and, and you stay there for like three or four days while your child is being evaluated by all of these “ologists” in this facility, while you as a parent are sitting on the other side of the one way glass watching the whole thing. And you’re getting interviewed and they’re just like turning, you know, your whole world inside out to get a handle on what’s going on with this kid. And I’m wondering if Diagnostic Centers wouldn’t benefit from having something like this to test with those kids who have those kinds of issues.

George Bailey 24:34
That is such a great question. Well, first of all, let me say that California has a fond place in my heart. I was born and raised in Hayward …

Anne Zachry 24:42
Oh, right on.

George Bailey 24:51
… so not too far from your Fremont Diagnostic Center. And, you know, In-and-Out Burger, I don’t know if you’ve ever been there …

Anne Zachry 24:51
Oh yeah.

George Bailey 24:52
Best hamburgers in the West. Great place. But to your point, that’s actually … I don’t know if we’ve toyed with that specific idea. I love that a lot. One of the things we have toyed with that we’re working on right now, it’s hard to get started to get … we’re very … we were three years old as a company,

Anne Zachry 25:11
Oh, you’re babies. Yeah.

George Bailey 25:12
Yeah, we’re babies. We’re two years old working within the autism community.

Anne Zachry 25:16
Got it.

George Bailey 25:18
But one of the things we’d love to see happen is we would like to get more Airbnbs to use these …

Anne Zachry 25:25
Ohhh!

George Bailey 25:25
… just depending on what kind of family it is. Well, then the point is that it’s kind of like if you go to the mattress store, and the guy says, “Well, try the mattress out, see how you like it.” Well, you’re gonna sit on the end, and kind of push it down with your hands. You don’t know what you’re doing. It’s kind of like, “How do I know if this is good?” And then he’ll tell you, “You gotta lie down.”

Anne Zachry 25:46
Yeah.

George Bailey 25:47
So we’re trying to take it to the next level with our idea of putting these in Airbnbs because then it’s like getting inside the bed. We’re pretty good at assessing, we’ve had a number of kids come by St. Louis, just to try it out, get inside, and they love it. It’s pretty automatic. And they’ll close themselves in without being asked to do so. It was actually my son, when he did that. And then lie down. And I didn’t know what he was doing in there. I gave him five minutes alone, just kind of waiting. And then I was just like losing my patience. And I opened the door. And there he is on his back with his hands behind his head. Very chill, very relaxed. And that led me to like, “Okay.” That was one of my earlier signals were onto something. The point is that I could observe that for five or 10 minutes. Or I could do it overnight…

Anne Zachry 26:36
Right.

George Bailey 26:37
… with a lot more confidence.

Anne Zachry 26:40
It’s like an opportunity to try it out. You know, that’s interesting that you would say that, because separate from what we do in special education, I have a whole other program that we run that’s devoted to sustainable living and food security.

George Bailey 26:53
Yeah? Oh, that’s great!

Anne Zachry 26:53
And yeah, and so it’s all evidence based instruction. It’s the Learn & Grow Educational Series. But what we’re looking to do is build these Learning Centers where people can come and stay in a sustainably built structure, with grey-water recapturing and composting toilets, and all these things that sounds scary, but really aren’t and try it out for a few days …

George Bailey 27:00
… would love this, what you’re doing by the way!

Anne Zachry 27:15
Yeah, and …

George Bailey 27:15
… very much into this!

Anne Zachry 27:17
… our ultimate goal is to at some point in time … what’s the point of convincing people to live this way, if there’s no place where they can go live this way?

George Bailey 27:25
Yes!

Anne Zachry 27:25
… is we also want to be able to do affordable housing that’s sustainably built with all of these same technologies. And so that if they go and they … they do a trial through Airbnb, at one of our Learning Centers that we are looking to build in the future, that they go, “Oh, I can deal with this. This isn’t gross. This is still really bougie. I can handle this,” you know, then they … they can … there’s a place for them to go buy into a home that has all of those things. Because right now, it’s all the DIYers who are doing that, and not everybody wants to build their own sustainable house. Lots of people just want to go buy a house and move in and be done with it. And but there’s no sustainably built homes in neighborhoods like that. And so it’s the same concept of, if you go and try it out first, and then realize, “Hey, this is cool,” and you see benefits from it, then you’re, like, ready to approach it for real and incorporate it into your actual lifestyle. And so I think that that’s something you are doing that’s in common with what I’m doing in this other program I have. And that there, there’s a lot of value of having that Airbnb Experience out there for people to try things that are new. It’s something that I don’t think Airbnb realized when they first started that they were going to create.

George Bailey 28:34
Yes.

Anne Zachry 28:35
But it’s you know, there’s now all of these places, and now they have Experiences. In fact, our Learn & Grow Educational Series, we actually do classes (and tours) through Airbnb Experiences. For one thing, it’s a lot more affordable to do it that way for us because Airbnb will insure all of the events that we conduct for up to a million dollars per event.

George Bailey 28:55
Oh wow, yeah!

Anne Zachry 28:56
And so that means I’m not having to go down and get a certificate of insurance every time I’m conducting a class. And the owner of the property where I’m doing my classes is like, “Oh, thank God, I’m not going to have to file a homeowner’s claim if somebody trips and,” you know, “sprains an ankle while they’re walking through the driveway or something.” There’s all of these advantages to using Airbnb to create these novel experiences that people can test out for just a few days without having to change their whole living experience. And then if they decide, “Oh, this was worth it,” okay. It is like a living test. And I think that’s … that’s huge. I think there’s a lot of value in that. So that’s exciting. I think that that’s a smart way to go.

George Bailey 29:36
And it’s something … it’s something that we hope to get started as soon as possible. I know that maybe some of your listeners are thinking, “Oh, where can I do this?” It’s still in process. I mean, we’re still looking for people to kind of try it out. We may have something in Indiana, but not … certainly not in California right now. But what’s interesting to me about it is that on a broader topical discussion rather than just autism, it goes to show that we have shifted our purchasing behavior dramatically since the advent of the Internet, and Amazon has really changed.

Anne Zachry 30:07
Huge. Yeah.

George Bailey 30:08
It’s big because, like, we think, for example … we used to think, “Well, what would the brick and mortar store look like for our operation?” And pretty soon after that, we concluded that there is no brick and mortar store for us.

Anne Zachry 30:22
Right.

George Bailey 30:22
That’s not to say that brick and mortar is dead. I’m actually a big fan of brick and mortar. I love getting out there. I love being around people. I love walking around. I don’t want to buy everything I have on online and then cloister myself.

Anne Zachry 30:35
Right.

George Bailey 30:37
But, that being said, this specifically, it’s just, it’s a big product. And it has … you’re going to consider it more like a buy like a car…

Anne Zachry 30:48
Right.

George Bailey 30:48
… which can be which can’t be bought at the store.

Anne Zachry 30:51
Right. Yeah, it’s not an impulse buy. Yeah.

George Bailey 30:54
Yeah, it’s not an impulse … Thank you. That’s basically it. Nice, Anne. Yes!

Anne Zachry 30:59
… that, and, yeah. So, because it takes that consultation planning and forethought and thinking, yeah, it’s not really a retail-oriented kind of thing where you would just have like, the ZPod Store. I can see like, if you had a ZPod section of a mattress store or something. But I can also see, you know, literature in developmental centers and regional center offices, you know, and things like that, where it would be something that, like you said, you’re not doing a medical model. So it’s not necessarily something that would be prescribed. But, you know, like an assistive technology evaluation, when you have kids who are in a special ed, who you’re trying to find out what technologies will give them access to education. Well, what if the issue is sleep? Could that be part of an assistive technology evaluation? And if that’s the case …

George Bailey 31:51
Now that being said, I’m really excited you brought that one up because I was I was just about to bring it up. Assistive technology programs … if you have an assistive technology program nearby, like, ask them about us. And the reason why is because we’re actually currently I mean, literally currently reaching out to all of them. Because we didn’t really even know they existed. I was not sophisticated enough with special needs community that really understand what these things were …

Anne Zachry 32:20
Right.

George Bailey 32:20
… but it’s a program that’s been around since the 80s …

Anne Zachry 32:24
Um-hmmm.

George Bailey 32:24
… and every state has one. And all of a sudden, out of nowhere, last year, the director for the Assistive Technology program for the Commonwealth of Massachusetts, reached out to us. And these guys, they set the standard.

Anne Zachry 32:40
Yeah.

George Bailey 32:41
They’re actually the best in the United States. And this guy, the director, really wonderful gentleman, Tom Mercier reached out to me, I think he’s retired now, but Tom said, it’s, like, you know, “Some parents are really trying to get me to look at this, and I just want to take a look.” And we were like, “Sure!” you know. We set them up with one of our beds, they tried it out with the family. It was really amazing success for this family, to the point where Tom and his team approved for their field operators to be able to recommend the bed.

Anne Zachry 33:13
See in this … yeah?

George Bailey 33:14
I’ll end with saying, now we’re reaching out to every single one of them, just to educate them. And they are a great place where, if they do keep these products in stock, and then allow people to try them out to find if it’s suitable.

Anne Zachry 33:31
Right. Well, and you’re making me think of so many things. So, when you’re talking about an assistive technology evaluation, trial and error is the only way to know if the tech is going to meet the individual’s needs. So it doesn’t matter how much peer reviewed research you have about, you know, this group of subjects in a study. How does that relate to Bob over here who needs this particular problem solved? Is it going to work for Bob, you know? And so … so you have, you know, you … you end up with a study where, you know, N=1, you’ve only got one subject, and … when you’re doing an evaluation … And you’re doing individualized planning, and whether you’re talking about special education, or developmental services, whether it’s through a state DDS or they outsource it to regional centers, it varies from state to state, or you’re talking about the Department of Rehabilitation, which is to employment what special ed is to education. And you’re talking about 18 and older now and adults with disabilities and if sleep deprivation is an issue that prevents them from holding down a job, is this an accommodation that department of rehab might have to buy somebody to keep them employable? And so there’s all and it’s, it’s all individualized planning, everybody gets an individualized plan of something, some kind. So if it’s Regional Center, it’s an individualized program plan – an IPP. If it’s special ed, it’s an Individualized Educational Program – IEP. If it’s Department of Rehab, it has an Individualized Plan for Employment – IPE. But they all start with that “I.” And it’s always coming down to the assessment of that individual person of, “What are your unique needs, and how can we meet them?” And when you’re doing AT evaluations, again, it’s trial and error of, “Let’s try this tech with you and see if you benefit from it.” Then, really the bottom line, that’s the only thing that works in an AT eval. And that’s just as scientifically valid as a-million-and-one research studies about a bunch of random people that doesn’t have anything to do with the one person you’re trying to serve. So I think that if you connect with all of these publicly funded agencies and have to do individualized programming, then your support data is going to come from the instance-by-instance individual assessments of, you know, how many of these individuals benefited from this tech? And what was it about them that made it useful for them? What do they share in common in terms of needs? And what do they share in common in terms of effects? And, then you get your aggregate data from that, but you got to have enough individuals served that way. But I think that might be an interesting way to go. Because you don’t already have to have the published research to necessarily back you up. If you’ve got, I mean, where you’re at right now is sufficient, and the fact that you’ve already got a regional center here in California funding this for someone, and you’ve got these AT assessors from … from, you know, around the country, taking a serious hard look at this from a developmental standpoint. I think that’s huge. And that’s very compelling.

George Bailey 36:35
Oh, I feel very, very fortunate. And the thing, I know, a couple of points to hit number one, our parents are the secret sauce.

Anne Zachry 36:43
Yep.

George Bailey 36:43
They work so hard.

Anne Zachry 36:45
Yep.

George Bailey 36:45
And they make it happen. Like, we’re where we’ve had successes, really, primarily, because the parents pushed for this, they see what we’re doing, they see the value, they have to do the sales, you know, to these institutions.

Anne Zachry 36:58
And they have to enforce the laws with these institutions. I mean, all of these …

George Bailey 37:03
Yes, enforce the law. I love that.

Anne Zachry 37:04
… all of these … the parents are the enforcement arm of all of these civil rights laws that protect individuals with disabilities. It’s usually the family that has to go to bat for an individual who can’t go to bat for themselves. And, and so you, you’ve got the way the laws are written, is that, you know, and this is democracy: Of the people, for the people, by the people. So the way the laws are written is the people are supposed to be able to … you know, advocate for themselves using these systems. Now, how effective that is, is a whole nother conversation. But the way the system is created, it’s … it’s on … the burden is on the family …

George Bailey 37:39
Yes, absolutely.

Anne Zachry 37:41
… to drive the process. And these, these programs exist for their benefit, but they’re supposed to go seek them out and avail themselves of these programs and say here are their needs that need to be met, what do you got, and then when they come to … come with a unique issue that the system doesn’t already have a, you know, a canned solution for, and they’re required to innovate, these institutions are not built for innovation. They’re built for bureaucracy. And so if the burden then falls on the parents shoulders, they go, “Well, wait a minute,” you know? “You’re here to serve us,” you know? “That’s we pay taxes, and we’ve already paid for this stuff. So what are you gonna do with the money you’ve already been given?” And so, you know, it really is … it does fall on the shoulders of the parents, and not just because they’re the secret sauce. It’s because they have to be. You know, it’s how the system is set up.

George Bailey 38:31
As much as I know that there are people out there … my son’s, you know … people who teach him and mentor him and stuff like that. Love him. Take care of him.

Anne Zachry 38:43
Right.

George Bailey 38:43
But none of them … none of them love him like I love him.

Anne Zachry 38:46
Right.

George Bailey 38:48
So you have to fight to be that advocate, but you bring up another interesting point earlier, that just really jumped out to me that is that, on the one hand, you’re totally right, that, you know, what is right for one individual may not be another and yet, we still have a big need for clinical trials …

Anne Zachry 39:06
Yep.

George Bailey 39:06
… for these broader statements. So that we can at least know what could be predicted to work. In other words, those individual assessments if you have to start from scratch every single time, because you don’t have any big picture data …

Anne Zachry 39:19
Right.

George Bailey 39:20
… and it’s very hard for you to be able to say, “Okay, this is what’s gonna work,” or, “We should even try this.” Because every single time that you revisit … you visit an individual, you have to start from scratch …

Anne Zachry 39:32
Right.

George Bailey 39:32
So, big picture, you know, clinical Data, allows us to be able to predict.

Anne Zachry 39:37
Right.

George Bailey 39:38
This study says that 80%, 70%, 90% of people with this condition are going to respond positively to this.

Anne Zachry 39:47
Exactly, it helps you narrow down the field of what to try. Yeah.

George Bailey 39:51
Yeah. At the same time, on the individual level, if your child … turns out that your child gets a full 10 hours of sleep, which is probably what they should be getting at the age of five to 18, or whatever the number is, right?

Anne Zachry 40:08
Um-hmmm.

George Bailey 40:08
Ten hours of sleep, they get that because they bounce the ball 10 times before they go to bed. They’re good. Guess what? if that works for your kid, rock on.

Anne Zachry 40:16
Right.

George Bailey 40:17
I love that. And I love the individualized approach. So there really is value in both sides of that.

Anne Zachry 40:23
Absolutely.

George Bailey 40:25
And then on the other side, one thing that I wanted to add is that, you know, we have these individual customers. Our goal right now as a startup is, how do we early on establish a pattern of gathering data that can tell us more about each of these individuals, and then the aggregate, so that we know with greater certainty, what is still … what is going on what is helping, what is not helping? And I think that it’s very important, you know, I would really urge all startups, anybody in this space, do clinical trials.

Anne Zachry 41:00
Yeah.

George Bailey 41:01
Expose yourself to that. And also do everything you can to get constant customer feedback, because they’re always going to tell you ways that you can improve …

Anne Zachry 41:11
Right.

George Bailey 41:12
… and some can be more shy about it than others but you’ve got plenty who are just, like, “I’m going to tell you my mind. I don’t like this part of your product, but I do like this,” and you will improve.

Anne Zachry 41:21
Right.

George Bailey 41:21
Some of our best improvements came because, you know, I got told by a very frank parent, “I don’t like this.”

Anne Zachry 41:28
Right.

George Bailey 41:29
And, I was really grateful, because then we took those things and immediately said, “We have some changes to make.”

Anne Zachry 41:34
Well, in your … I was gonna say you’re making me think of how it could be done, because how you could get that data, because if you do the individual assessments where you’re matching product to unique individual need, and now you’ve got 50 individuals who have this in their IEP, or their IPP, or their IPE, whatever. All of those documents are goal-driven. So, whenever you do any kind of individualized planning, first, you have to figure out what it is you’re trying to make happen. And then you write a measurable annual goal to that need. So if the goal is is we want Bobby to sleep at least eight hours a night for a full month straight, then that’s your annual goal, that by the end of this year, Bobby is going to be able to sleep the, you know, at least eight hours a night for a month straight. And the progress … being made towards that goal is going to automatically generate data if the goal has been legitimately written … if it really has been written in a measurable manner. And so you’ve got all of these individuals with all of these goals that speak to sleep, and this is the solution that they’re attempting to meet that goal, the data collection is naturally going to speak to the degree to which the device is helping or not. And then when you get enough people who have these devices as part of their individualized plans, and you’ve got this progress towards goal data being collected in terms of how efficacious it is, then you can take all of these multiple individualized reports, and then turn it into a report of aggregate data where you say, “Okay, well, out of the 50 people where we had on these individualized plans, 25% of them have this issue and responded this way versus this or …” you know what I’m saying? So you’re taking the individualized data, and piling it all together to create a body of aggregate data that can then be analyzed. And so you’re taking advantage of both sides of that coin to get valid data. And … and it’s performance based. It’s not hypothetical. So that’s what I was thinking …

George Bailey 43:37
That’s one thing that really, I love. And that is, I want to emphasize to you on the terms that what, folks in the IEP, what I would love is that, I’m going to speak a little bit, because I’m not the IEP expert, okay?

Anne Zachry 43:56
Right.

George Bailey 43:57
But, the thing that I hope that a lot of IEPs take away from this is that, of all of the aspects of a child’s life we’re talking about, this is a pretty critical one.

Anne Zachry 44:08
Yep.

George Bailey 44:08
I’m not saying it’s the most important because I think that each of us in our specialties, we’re all vying for attention, we’re all trying to, “Well, we’re the most important because we’re sleep and that’s 1/3 of your life,” and “We’re the most important because we’re broccoli, and if you don’t eat broccoli, you’ll get cancer!” All of us are competing, but I am here to say that sleep is a critical component of your IEP.

Anne Zachry 44:33
Yeah.

George Bailey 44:33
And, if it’s going great, that’s wonderful, but it should be visited. And that … that’s a hard to find in a professional, in the sense that they at least have to have some fundamental understanding both of its benefits, and maybe some kind of surface recommendations that they can make, at least getting out the gate to, kind of, let’s … let’s take care of some of the things that could be the problem. Let’s find out, for example, your child … Is it dark enough when they’re sleeping? Is it too noisy? Are you watching television until 11 o’clock at night with your child exposed to screens? These types of questions help us to eliminate as factors, possible causes …

Anne Zachry 45:17
Right.

George Bailey 45:18
… what is driving the loss of sleep, and you need to have at least a fundamental, basic understanding of what could be getting in the way of sleep. Now, of course, at that point, you always want to have a good “sleep go-to”; somebody that you go to, “Okay, you know, I’m out of it, I’m out of my depth, I recommend targeting this institution with sleep centers,” …

Anne Zachry 45:40
Right.

George Bailey 45:39
… or something like that. And even then, though, I’ll tell you that I get a lot, a lot of phone calls from parents who said, the sleep center’s, like, given up.

Anne Zachry 45:48
Yeah.

George Bailey 45:49
They just don’t know what to do with this kid. Because this kid defies their kind of expectations for what should be helping the child to get better sleep.

Anne Zachry 45:59
Well, and I would think the sleep centers would want to test your product as well to see if … especially when they’re running into a situation like that. That that should be part of the testing milleu.

George Bailey 46:07
Yeah. Well, this is all the more reason for in-depth clinical trials, to be able to put in front of them, because they will correctly come to us and say, “We expect you to have data.”

Anne Zachry 46:19
Right.

George Bailey 46:20
And I expect that from them. I think that that is good. Now, if they’re so inflexible as to not be helping at all, especially when we already have the pretty heavy anecdotal evidence …

Anne Zachry 46:32
Right.

George Bailey 46:33
… that this is something that should be taken seriously, the aspect of that concept of enclosure, that I think would be kind of negative. But I do expect them to have an academic interest in what it is we’re doing.

Anne Zachry 46:47
I would think they’d be wanting to … helping you do the studies. That they would want to get in on and get published. I mean …

George Bailey 46:52
Oh, yeah. The reality, though, behind studies that we should all here bear in mind is that no matter what you do, you’re going to be spending money.

Anne Zachry 46:54
Right.

George Bailey 47:02
And so, for example, investors and startups, they don’t actually like to spend money on stuff. If you go to investors and say, “I want to raise capital, this amount of capital, $200,000, or whatever it is, is going to go towards a clinical trial.”

Anne Zachry 47:18
Right.

George Bailey 47:18
They’ll say, “Come back to us, once you’ve done the clinical trial.”

Anne Zachry 47:21
Yeah, it’s the same way with nonprofits. It’s like, “We’ll give you a grant, if you can show what you’ve done with the grants you’ve gotten in the past.” I’m like, “Well, now, somebody’s got to be the first one, here.”

George Bailey 47:33
Yeah, so you have to look for people who are very invested, not just financial returns, that you may be able to provide, but the outcome that they actually love the story that you have …

Anne Zachry 47:47
Right.

George Bailey 47:48
… what you’re trying to create. And so that’s where, you know, I agree with you that I would love to have more sleep centers, try our beds to figure out how effective they are. And not just that the tried numerous aspects. It’s not like, the bed’s are effective or ineffective. That’s not really …

Anne Zachry 48:05
Right. It’s like, how are they effective? And what areas? Yeah.

George Bailey 48:09
Yeah, yeah. Or, what about the scent? Is the smell of the space affecting anything? What about the temperature? And so there’s so many variables. We do have the, kind of, virtue of being able to isolate those variables and create some constants that are not really, as easily achieved in normal experimentation. I actually had a really good conversation with Temple Grandin about this, an the thing that she said, that just blew my mind, I would not have been the one to think of this, she’s very …

Anne Zachry 48:43
Oh, her brain is just something else. Yeah.

George Bailey 48:45
It’s really amazing. The thing that she told me … she says, “Every kid who sleeps in your bed, the same sheets, the same mattress …” and then she laid it out, like, “This is what it’s gonna look like,” It’s just like, “Oh, my gosh!” I immediately ran to my pencil and I’m just writing stuff down, going “Thank you! Thank you!” She’s so …

Anne Zachry 49:12
Yeah, the trial is … it’s not comparable if everybody’s not experiencing it under the exact same conditions. You can’t compare one person’s experience to another unless it’s all identical. Yeah, that’s the thing about clinical trials.

George Bailey 49:24
And it was really refreshing to get her perspective on that. I feel she’s very generous with her time.

Anne Zachry 49:31
She is.

George Bailey 49:33
And so that’s one of the things that I like about events is that we can isolate a lot of factors like, look at, okay, so this is one of the things we’re trying to get people to think about as we look at this as a solution is that, imagine every autistic child in the United States and adult. Now, imagine all of their different living situations. Some of them have big rooms, small rooms, most of them probably small rooms, you know, because we’re not all wealthy…

Anne Zachry 50:03
Right.

George Bailey 50:05
… you know? Even the room, the shape of the room, the lighting in the room, the proximity to the city, some sleep right next to the train tracks …

Anne Zachry 50:12
Right.

George Bailey 50:12
… and so to be able to isolate, their kind of like, the … the ideal is really hard to do. And I like the idea that we’re working towards that. And that we … were kind of, let’s give a consistent and predictable environment in which to control for other variables. And then we can start really isolating different variables in a quantifiable way that may be causing some of the more serious issues that we’re seeing.

Anne Zachry 50:44
Totally makes sense. Well, so we’re coming up now on … it looks like almost 50 minutes

George Bailey 50:51
It’s been … every bit, it’s been fun.

Anne Zachry 50:57
I know, this has all been, like, enthralling. So um, but I know that not everybody’s gonna want to listen for like, hours and hours. So I think the big question that people are gonna have after listening to all of this and going, “Well, that sounds really cool. How much does it cost?” So what is the price point that … that parents if they’re interested in looking into this, what are they looking at, you know, in terms of cost? I mean, even if a parent were to lay out money for this, there’s a possibility it could be reimbursed by any of these agencies that have an obligation to their kids. So … but it’s going to require, you know, proof of purchase and all that kind of stuff. I mean, what kind of price tag?

George Bailey 51:33
So we’ve got the bed, as I’ve said, covered in states like Massachusetts, Missouri, Minnesota, Ohio, California, and Kansas, and we’re gonna keep on working on that.

Anne Zachry 51:42
Good.

George Bailey 51:43
We’re happy to kind of advise parents on how we think that can be best accomplished. They come out in June, the new version, because we sold out all of … all of our China inventory.

Anne Zachry 51:55
Wow.

George Bailey 51:55
We have a new Made-in-the-USA version that has upgrades all based on what we heard from parents.

Anne Zachry 52:01
That’s so cool.

George Bailey 52:02
So the new one will cost $5,000, retail. That being said, the first 288, that we’re going to be selling are going to be $2,800 each, and that shipping included on those 288.

Anne Zachry 52:14
Okay.

George Bailey 52:16
So we’re going to cover the shipping on that. The reason why we want to get these out and want to get people experienced … I was gonna say that, we do have financing and such, but the fact of the matter is that if you are invested in trying this for your child, we are invested in finding a solution. We have been very fortunate to get some really great guidance on how to get these things funded, we really want to share that with people. Our website is zpodsforsleep.com.

Anne Zachry 52:48
Right on.

George Bailey 52:50
Feel free to reach out to us because we are so invested in these kids, and we just want to help in any way that we can.

Anne Zachry 52:58
Well, that’s really exciting. And all that being said, I mean, for me as a … as an advocate, someone who goes in and helps families advocate for these kinds of solutions for their children, you know, this is something that we regularly do. It’s like, “This is cost-prohibitive for this family. It’s not like we’re asking for a $2.99 app, you know. This is this is an outlay of cash that is a necessary accommodation for this particular individual.” Then, you know, I know that I can go … these are the kinds of things that I go to agencies for and say, “Look, you know, if it was something easy and out of pocket that this family could do, but this is this is an expenditure. And this is what these public resources are for.” I’m really excited. I’m going to be looking on your website to see what you’ve already got up there in that regard … of how parents can go advocate for themselves to get these things. But I would also want our listeners to know that if you already have an advocate or an attorney that you’re working with, and this is something you think might be appropriate, you would want to involve that person in the conversation as well. Because, they may know, you know, how the system works a little bit better in terms of rules and regulations to help you navigate those sharky waters and overcome whatever objections people might have. Because the agencies don’t want to spend that kind of money either. And they’re going to come back and say, “Oh,” you know, “… you just want us to fly your kid to Hawaii and swim with the dolphins.” And you know, it’s like, “Look, dolphin therapy might be effective, but does it … does my kid needed to learn how to read? No.” And so, you know, there’s, you know, … I’m not, you know, I’m not the person who’s going to go there and try and pitch some, you know, crazy, ridiculously expensive solution just because, you know. We’re not trying to help people milk the system for things that are not what the system was designed for. But in an instance like this where, like you were talking about the one child who was on the verge of institutionalization, well, now you’re talking about least …

George Bailey 54:48
Yeah.

Anne Zachry 54:48
… least restrictive environment, that in all of these programs, the … the commitment is to try and keep people in as non-segregated of a setting as possible, and to keep them as integrated with the rest of society as much as you can. And, you know … and also, when you’re looking at it from a budgetary standpoint, which costs less? A one-time expenditure of five grand, or $8500 a month for a residential treatment facility, and to accomplish the same outcome? And so for those kids who are in that unique boat, I think that this is a serious conversation to be had. Because how many residential placements could be prevented by making the home environment more suitable? When you’re talking about … it’s really about ecological control. And all if for the … in the absence of ecological control, you’re going to pack this kid off someplace and separate them from their support system and their family. You know that … that’s never the best idea. And that’s always the last resort. So if there’s another layer of intervention that can come before that, that can prevent it, that’s always important for everybody in the … in these lines of work to understand and know about … that this could be something that the agencies understand this is far less expensive than what the alternative is for some of these individuals. And it certainly is far more compliant and less segregationist. And so for everybody involved it’s a better solution, if that’s the case. And so I think that this is something that other advocates and attorneys need to be paying attention to as well, that this is something they could potentially be asking for if it suits the need. And if so, only an individualized assessments going to answer that question. And …

George Bailey 55:03
And I would be happy to talk with any of those attorneys formulating strategy sessions. It’s kind of our joy, to be able to help. It is funny, but I’ll leave you with one last story. I know that we’ve talked a long time … about two months ago, I was helping a mother and I was in a hearing. I was not allowed to speak. They were asking about, kind of, like … they’re looking for any sort of other low-cost, you know, a solution and this mom had tried everything.

Anne Zachry 56:52
Right.

George Bailey 56:54
Finally, the, kind of, opposing counsel, or whatever you want to call him there, was saying, “Well, this is … it’s just changing their environment. That’s all that they’re doing. Why not change the room?” Like, “You can get … the room doesn’t need to be that …” Something like that. I was just thunderstruck …

Anne Zachry 57:11
Yeah.

George Bailey 57:12
… by what I was hearing. I was like, “You’re literally advocating that this woman move rather than just paying for the cost of the bed?”

Anne Zachry 57:19
Right. Oh, yeah. It’s like, “How can …” All the things I see. The stories I could tell, trust me. I mean, that’s like the tip of the iceberg. And, and it always comes back down to, “We don’t want to …” It’s a “not out of my budget” mentality.

George Bailey 57:36
Yes!

Anne Zachry 57:37
It’s not out of my budget mentality. You’re …

George Bailey 57:39
Very short sighted.

Anne Zachry 57:41
… very short sighted. I mean, these are the same kinds of people who would rather criminalize a behavior and stick a kid in juvenile hall than pay for a BCBA to come in and provide a behavior program. And it’s like, well, you know, “Even though it’s going to cost the taxpaying public 10 times as much with, like, far more abysmal results to put them in the juvenile justice system, at least that’s like coming out of my budget.” And it’s like, “What? You’re gonna go home and pay taxes for that? Do you not understand this coming out of your personal budget?” And it’s just the lack of wisdom. And so it’s like, how did you get this job? You and I are encountering some similar issues just coming at it from a different perspective. And it this has been a very enlightening conversation, this has given me a lot of things to think about. I’m going to have an ADHD spin-off in a minute, and, you know, a-million-and-one ideas are going to pop in my head. But well, thank you very much for doing this with me today, I think we’ve covered a lot of ground. And this is a lot of information for people to digest, I will very, definitely make sure that I’ve got links to all of your stuff, you know, it’s going to be something going to be sharing with the other professionals that I work with as well, so that they are aware that this is even an option. And as we encounter these kinds of things in the field, we now know, we have got this potential tool in our toolbox that we can at least attempt to see if it’s going to work. I mean, again, trial and error when you’re talking about technology.

George Bailey 58:57
You never know, but when it does, it really rocks. And, seeing the changes that we see, like, we’re talking about four hours of sleep a night; all of a sudden, ten hours of sleep.

Anne Zachry 59:06
Oh yeah, any kind of … any kind of change you can make with respect to sleep problems is always usually pretty noticeable pretty quickly. And so, you know that part of it, that’s the proven science is that improving sleep quality improves a whole bunch of other stuff. So really, it comes down to, you know, where does your product fit into improving sleep quality? Not, you know, so you don’t have to prove the sleep quality issue. It’s just you … it’s about, you know, showing how your product fits in with it. So I’m excited to see this and if you get some Airbnbs and stuff like that they’re willing to take these on, yeah, share us the links for those guys, too, because we’ll put that out there for people to go and check it out and try it and see what they think.

George Bailey 59:45
Absolutely. Thank you …

Anne Zachry 59:46
Thank you.

George Bailey 59:48
… so much! More than anything, it’s been fun.

Anne Zachry 59:50
Well, thank you! It has been. It has been. Well, much appreciated.

George Bailey 59:55
Thank you.

Anne Zachry 59:55
You’re so welcome.

Anne Zachry 59:57
Thank you for listening to the podcast version of, “Interview of George Bailey, President of ZPods. 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 info@kps4parents.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.

Pragmatic Language & YouTube Reaction Videos

Could YouTube reaction videos be used to teach pragmatic language skills?

I’m not a Speech-Language Pathologist (SLP), so I’m not pretending to be an expert in the field of language processing. However, I rely on data from SLPs to inform my understanding of the communicative aspects of individual learners’ respective abilities to process information and put it to constructive use.

I’m familiar enough with the concepts of language processing to have some informed questions about things I see in the world, every now and again. One of those things that just dawned on me most recently is the question of the relationship between pragmatic language processing and the popularity of reaction videos on YouTube.

For those of you who may be unfamiliar with reaction videos, they are videos made by YouTubers in which they react to videos that have become popular on YouTube, as evidenced by their respective number of views. So, to be clear, it’s videos of people watching videos, usually for the first time, so that other people can watch their reactions.

The pay-off of watching reaction videos is to connect with the reactor’s emotions through the reactor’s body language, facial expression, word choice, and tone of voice. Of those four elements of language watched for by the audience in a reactor during a reaction video, three of them are pragmatic language.

Here is my hypothesis, but I need the SLPs in our audience to weigh in on this, too: You know how when you see something cool, your first impulse is to share it with somebody else and see how they react to it? It’s like we only get one first time of experiencing something, but we want to relive it and the only way we can is to watch someone else experiencing it for the first time.

We ride the emotional roller coaster with each new first-timer we expose to the cool thing, relating to that other person’s emotional response based on our own memories of enjoying our first time with whatever the cool thing is. It sounds like a weaker version of the behavior we otherwise refer to as addiction. The first time is always the best time and the experience can never be fully recaptured, but it can be approximated. It goes to show that all behaviors occur on a spectrum, including those we typically regard as extreme.

Art is the manipulation of media in order to convey emotion. It is often non-linguistic. Light, color, sound, shape, space, and a host of other things can be manipulated according to the laws of physics to evoke feelings and tell stories without words. Other forms are art use words as one more medium to enrich their creations, whether written, spoken, and/or sung.

One of the most popular forms of reaction videos on YouTube is devoted to music, specifically individual music videos. This involves the manipulation of visual and auditory information, only, as the other three senses cannot be actively engaged. The exception could be bone conduction of vibrations from the music in reactors wearing headphones or near loud speakers, creating proprioceptive input that goes to the sense of touch.

There are dozens of reaction videos apiece to a great many songs on YouTube. The number of people reacting times the number of songs to which reactions can be given creates exponential exposure for the artist of each original performance video. Reactors increase their own exposure on YouTube by riding on the coattails of artists who have millions of views of their content because of the quality of their art.

When people search YouTube for an original artist’s work, all of the videos of people reacting to that artist’s work will also come up in the search results. It’s only natural that once one has viewed the original video to want to see it again through the eyes of someone else who has not seen it before and determine if they reached similar conclusions. People are not just looking to relive the experience, but also to be emotionally validated for feeling the ways they felt experiencing the original video for the first time.

Which then begs the questions, “Why do people get so sucked into these videos that are so heavily based on pragmatic language?” and “What are the implications of those facts for individuals who struggle with pragmatic language disorder or autism spectrum disorders that compromise their abilities to accurately read the facial expressions, body language, and tone of voice of others, and express themselves appropriately that way, themselves?”

This boils down to the research question of, “Can reaction videos be used to teach pragmatic language skills through video modeling to individuals who struggle with pragmatic language?” Only scientific research can tell. I’m all about encouraging such research, because now my inquiring mind wants to know.

One of the most powerful examples I can think of is the song, “My Mind,” performed live by Yebba at Sofar New York a few years ago. I have never heard anybody take people on such a hypnotic journey through sound in my life. Watching the reactors getting sucked into the song and becoming mesmerized is something to witness unto itself.

The impact of the reactions to her videos led to a compilation video of several reaction videos, that was basically the YouTube version of a meta-analysis, in which all of the reactors’ reactions were displayed simultaneously, allowing viewers to see which parts of the song triggered the strongest reactions from the most reactors at once, like a living performance graph. Me analyzing that now is like the reflection, within the reflection, within the reflection … like, a metaphorical nautilus of analysis.

Another mesmerizing performance is “SOS” by Dimash Qudaibergan at the Slavic Bazaar, also from just a few years ago. Watching people who have never heard of him before reacting to Dimash singing “SOS” is something to behold. The first time you watch it yourself, you’re immediate reaction is, “No! That can’t be real. He’s not human!” Then you watch it again in the reaction videos and see other people having their responses and you think, “Okay, it’s not just me.”

Another one that requires additional inquiry is Chris Stapleton’s “Tennessee Whiskey,” which doesn’t even have a video. It’s just the song with a still image of the album cover throughout, and yet it has over 500 million views on YouTube as of the time of this post. Watching people who have grown up on rap and hip-hop reacting to this song with surprise is a joy. They are the ones that give animated visual life to what is otherwise a largely auditory experience.

Anyone watching the Kodi Lee AGT audition reactions can see a handful of egocentric attention- and click-seekers suddenly reduced to puddles of humility over and over again. In an instant, Kodi’s performance puts things into perspective and they get it. The clicks to watch the reaction become earned because it isn’t a trick; these people are legitimately shook by what they see and that’s what engages viewers of reaction videos.

In all of the above-referenced original videos, surprise is always a key element. In every reaction video that gets any kind of traction on YouTube, the reactors are shocked by what they are watching for the first time, and become emotionally engaged with the song and performer to which they are reacting. In all the instances cited above, there is an emotional story being told with which listeners can identify.

The reason the views of the original videos are so high in the first place is because the content is so emotionally engaging. People reacting to them for the clicks suddenly forget about the clicks, find themselves transported, and start talking about things that actually matter in the world. What often started out as an exercise in narcissism for pay can become a transformative experience that snaps a selfishly motivated YouTuber right out of it and puts things into proper perspective.

The sounds of the originally performed songs conform with their respective story lines in a way that takes the listener along for the emotional ride of each. With the exception of the Chris Stapleton example, above, reactors also have the benefit of watching the performance, which adds the benefit of facial expression and body language to the communication. Each song conveys a different emotional experience, but one must have intact pragmatic language skills to appreciate what makes each song so uniquely impactful that it inspires so many views and, thus, so many reaction videos.

And, I want to be clear that, even if the reactors are initially reacting to these specific videos only for their own marketing purposes, the ones that get the most traffic are the ones in which the reactors are caught off guard and have authentic responses, like crying or, in the case of Yebba, getting moved by the Holy Spirit in the middle of a song that is not about religion in any kind of way. The value in watching these reaction videos is seeing real people moved for real in the moment without the opportunity to fake it.

There’s no way to conceal authentic surprise and awe, and those are the feelings viewers seem to be trying to experience by watching these reaction videos. What is it about the human psyche, then, that causes us to seek experiences that make us feel surprise and awe? Why do we want to witness miracles so badly? Why are the outliers who receive the most favorable public attention usually artists rather than scientists? Why do we tend to think data is boring and seek emotionally extreme experiences when data is practically useful and emotions often are not?

I don’t have the answers. I just think this is a line of inquiry worth exploring. I’m curious to see if the evidence in support of video modeling as an instructional strategy could be applied to using reaction videos to teach pragmatic language skills to those who struggle with this area of language processing. Are there any communication researchers out there who might want to conduct some studies so inquiring minds can know?

Fecal Smearing, Disability, and the January 6, 2021 Insurrection

This is not a pleasant topic at all, so I want to start out this post/podcast with the understanding that I know this isn’t a pleasant topic. That doesn’t make it something to avoid, however. Problems aren’t solved by pretending they don’t exist.

For those of us who work with people with significant mental disabilities, fecal smearing, otherwise knows as “scatolia,” is a behavior we usually encounter among individuals with significant developmental disabilities and dementia. These behaviors often happen among these populations very frequently alongside other bowel-related health issues, such as constipation and encopresis. Simply put, constipation is poop not coming out and encopresis is poop not staying in.

The function of most fecal smearing behaviors appears to be communicative, especially among individuals who are nonverbal or have limited verbal abilities. In verbal individuals who engage in these behaviors, other significant mental impairments are still present, whether its the loss of mental functioning due to dementia; the failure of mental maturity due to developmental disabilities, such as intellectual disabilities and/or autism; or some forms of mental illness. Fecal throwing and smearing can also be seen among other primates. It’s a primitive, infantile behavior.

When I was 20 years old, I worked in a nursing home providing hands-on care to medically fragile and/or mentally compromised elderly people. All of us knew who the poop-throwers were. The one on my wing was also an Evangelical Christian who would sing church hymns while throwing her poop at anyone passing by and accusing them of being the Devil. The exception was the visiting Evangelical pastor who would stop by to visit the patients every week, but he would come down the hallway singing a hymn at the top of his lungs so she would know it was him before he walked into her room, or he would get it, too.

I encountered fecal smearing behaviors once again when I finished my undergraduate degree and started working as a job coach in the community with adults challenged by developmental disabilities. One of the young men on my caseload was a fairly capable individual with autism who, in spite of his many attributes that made him employable to bus tables, serve drinks, and perform general maintenance in a restaurant, would engage in fecal smearing whenever someone made him upset. What had started as a behavior when he was younger with less language abilities had become a deeply entrenched learned behavior that followed him into adulthood long after he had developed completely intact verbal communication skills.

The differences between these two examples from my own life were important to note. In the nursing home, the woman on my wing with fecal throwing behaviors was kept on laxatives so that her feces wasn’t solid enough to hold in her hand for throwing. Cleaning up bedpans was infinitely less work and trauma than jumping into the hazmat shower fully clothed and going home in scrubs from the supply closet because our own clothes had been ruined.

By comparison, the young man who struggled to hold onto a job and a group home placement because of this behavior was successfully broken of the habit through Applied Behavioral Analysis (ABA), Cognitive Behavioral Therapy (CBT), and psychotropic medication management to address anxiety and depression. Because he was verbal, he was able to talk with his therapist about the feelings he was having when he engaged in these behaviors and we were able to come up with a plan that helped him deal with those feelings appropriately, eventually extinguishing the scatolia altogether. He’s been employed every time I’ve encountered him since, mostly in the community eating at the restaurants where he has worked.

What we discovered based on what he was telling us is that, historically, he had found himself in situations where he couldn’t tell people what he was thinking for lack of language and, later, as the language started coming on, because he was afraid to complain about certain things for fear of retaliation or punishment. The degree to which he was correct in his perceptions about those past experiences is not as important as the fact that he was afraid to say anything with words, but he could express himself non-verbally through fecal smearing.

Fecal smearing behaviors tend to orient around protest, disagreement, and retaliation, based on what little research has been conducted on the topic so far. Most of the available research comes from mental institutions and long-term care facilities. I could find no research about fecal smearing happening in the general community, though such research may exist and I just couldn’t find it. So much of the research is hidden behind paywalls that it’s not accessible to everyday people, which is a topic of discussion all to itself for another time.

I brought this subject up in my book club last night (we’re currently reading The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be and Embrace Who You Are, by Brené Brown, PhD, LMSW). One of the other club members shared that her home had been broken into years ago and robbed. The robbers also pooped on her wooden floors, ruining the finish, and she had to wait for a year-and-a-half to have the time and money to refinish her floors, with the damaged spot where the poop had been, serving as a daily reminder of the sense of violation she had experienced. Now that I think about it, the same thing happened to my grandparents in the 1990s while they were on an RV trip, only the poop was on their walls.

My book club friend stated the police officers who had responded to the call advised her that this was a common behavior witnessed among break-in robberies like hers. Law enforcement may be a better source of information about the prevalence of fecal smearing in the general community, which goes to the degree to which we have delegated the responsibilities of our mental health agencies to law enforcement. Behavioral researchers should look there for data about the frequency with which these incidents occur and how they are addressed.

Needless to say, there was no scholarly research I could find that was specific to the fecal smearing behaviors that happened during the Insurrection of January 6, 2021, at the Capitol of the United States of America. Only official records from the government and reports in the media capture the incident. I’m quoting the Trial Memorandum of the U.S. House of Representatives from the second impeachment proceedings against the 45th president of the United States, here:

Once inside, insurrectionists desecrated and vandalized the Capitol. They ransacked Congressional Leadership offices—breaking windows and furniture, and stealing electronics and other sensitive material. They left bullet marks in the walls, looted art, smeared feces in hallways,and destroyed monuments … [Emphasis added.]

This has been bothering me ever since it was first reported shortly after the Insurrection that fecal smearing had occurred during this incident as well. Based on what I already know about fecal smearing behaviors, what that tells me is that at least one person with profound disabilities was among the Insurrectionists.

Based on the other overt behaviors of the Insurrectionists, it’s safe to say that America’s mental health crisis reached an apex of sorts, though it isn’t done showing itself, yet, based on the continuing domestic terrorism threats we all still face. It’s an Extinction Burst of a sort, and one we cannot afford to reinforce. These individuals are seeking reinforcement for behaviors that were once rewarded and escalating their behaviors when the rewards are not forthcoming.

I think they’re all cries for help, but the behaviors are so off-putting to most other people that they are disinclined to help and eager to ostracize anyone engaging in them. I think ostracizing these people helps the rest of us avoid the unpleasantness of dealing with these behaviors, but it’s not a democratic response, much less an ethical one. We need a plan as a people on how to solve these problems, not punish people for having them. I’m not saying that people who commit crimes shouldn’t pay for them. I’m saying that the causes of criminal behaviors have to be addressed so they don’t happen in the first place. There is way too much money being made on incarcerating Americans instead of helping them.

The bigger concern for me, these days, though, is how many other people in positions of power actually understand the severity of our nation’s mental health crisis and choose to exploit these individuals rather than meet their needs, such as the 45th president of the United States, for example. Protest, disagreement, and retaliation are the usual communicative functions of fecal smearing, and the Insurrection-related fecal smearing doesn’t appear to be different in that regard. Everyone involved in the Insurrection was there to protest, disagree, and retaliate. What this specific form of communication tells us is that the people who engaged in it felt desperate enough to express their feelings through these actions rather than words, as if words had failed them and/or they didn’t feel safe to use them.

When people are mentally impaired and don’t fully understand everything going on around them, they can easily become confused, misled, and manipulated by others. They are often aware when others are mistreating them even if they don’t fully understand the hows and whys. They know when they find themselves in a disadvantaged situation and will harbor valid resentments about it, but they often don’t know who did what to make it happen, much less what to do to make things better.

When you have a right to be angry but you don’t know how to get out of the situation, and no one is stepping up to help you, it’s easy to become angry at everyone. You feel like the whole world is against you and there’s nothing you can do. At that point, you default to the highest stage of social emotional development you’ve completely mastered, which may be well below your chronological age depending on the degree to which your social emotional development was healthy or not. Once someone becomes so overwhelmed emotionally in the absence of a solution that they start freaking out, very childlike – even infantile – behaviors are likely to ensue.

In the name of “liberty” and “freedom,” we’ve absolved ourselves of any responsibilities for the welfare of our neighbors. Personal liberty becomes confused with narcissism. People pay lip service to the ideals of the Constitution while exploiting their neighbors for financial gain. Money is an imaginary construct that many people value more than human life.

Many of these same people claim to be true believers in Christ, effectively singing church hymns as they sling their poo at everyone else. I don’t recall any part of the New Testament encouraging that kind of behavior, but religious scholars who have studied the texts more closely than I have are welcome to correct me if I’m wrong.

Most of us understand that the people who got sucked into the 45th president’s own mental health crisis are also not well, but they also account for approximately one-third of our population. That makes them a dangerous minority that has now grown into a domestic terrorism problem. It puts the assertions by the majority of Muslims around the world that Islam is not a religion of violence into context, now that we’ve got our own violent religious radicals here at home calling themselves Christians.

The inextricable intertwining of religion and mental health problems in societies is yet another topic for a separate conversation, but I have to point out that there are many responsible faith leaders struggling to lead as many of their congregationalists abandon the teachings of Christ to follow every wolf in sheep’s clothing that steps into their path. American commercialism and its own brand of capitalism have created a competitive mindset about everything in our culture.

It’s “My high school football team is going to crush your high school football team.” It’s, “My church is made up of the chosen and all the other churches are full of people going to Hell.” It’s, “My neighborhood is the best and everyone else lives in a dump.” Where is this narcissistic drive to be “better” than everyone else coming from in a society that’s supposed to be democratic? Why do we feel driven to create a caste of “losers” to make ourselves feel like “winners”? How does hurting other people make someone a “winner”?

People have developed brand loyalties around things that aren’t actually brands. American consumerism and its obscene obsession with the pursuit of material wealth has grossly undermined the uniform message of every great faith. Wanting more than what one needs while others go without contradicts every pious teaching of every great religious leader the world has ever remembered. We’re all supposed to be collaborating with each other, not competing with each other, to survive as a species.

Raising children from birth under conditions that deprive them of developmentally necessary opportunities to reach adulthood physically, mentally, emotionally, and spiritually intact, is an uphill battle. The science is clear that the type of family support system an individual has is irrelevant; what matters is whether they have any type of support system at all.

Children growing up in homeless shelters with after school tutoring, social services, higher education and job placement services for parents, etc., remain as academically intrinsically motivated as children living in traditional family homes with access to resources. The gender identity and sexual orientations of parents have zero bearing on the quality of their parenting. Parenting becomes poor when it fails to nurture childhood development, regardless of the gender or orientation of the parent.

What we can safely deduce from witnessing current events as it relates to the known science is that being raised in economic extremes, whether extreme poverty or extreme wealth, deprives children of developmental opportunities that undermine their mental, emotional, and communicative growth. Extremely wealthy children are at risk of never learning how to do anything for themselves and will implode the minute they have to deal with serious life challenges. Extremely poor children are at risk of malnutrition, homelessness, and other hardships that make mere survival the priority without the opportunities to work on any other part of their development.

As the middle class in America continues to disappear, we’re at risk of more and more people ending up at one economic extreme or the other and their children growing up thinking that humanity is truly divided as a matter of nature into two classes: the “haves” and the “have nots.” If that’s all they see growing up, the divide becomes a hard and fast expected part of society. What do you think happens to a society that is made up entirely of people who failed to reach developmental maturity? It goes Lord of the Flies pretty quickly, after that.

In my ever-worried imagination, under such circumstances, humans will return to the trees if we survive as a species at all. I keep thinking, “Maybe the bonobos will have a better go at sentience than we did.” It makes me want to teach them sign language just so I can tell them all the mistakes we’ve made and what to avoid. The first thing I’ll teach them is, “Use your words, not your poop.”

Returning to the present issue of poop-smeared threats to our democracy wrapped in Confederate flags, I have a theory about one particular aspect of the problem that I haven’t seen discussed in the news about the Select Committee’s investigation into the Insurrection of January 6, 2021. In my line of work, the Americans with Disabilities Act and Section 504 of the Rehabilitation Act come up quite frequently. When I see things that do not appear to conform with their requirements, they jump out at me.

Given that were clearly dealing with people struggling with mental disabilities of one type or another, and given that social media has been instrumental in feeding them misinformation while giving them the tools to organize, it appears to me that the social media algorithms are not coded in a manner that reasonably accommodates users with the types of mental disabilities that make them vulnerable to misinformation and recruiting tactics of foreign adversaries and domestic terrorists.

If anything, social media’s absence of reasonable accommodations in its coding for users with these types of mental issues is creating more domestic terrorists than we already had in the first place, suddenly taking them from the fringes of our society to a sizable, dangerous minority of violent people bent on overthrowing the government. In the absence of effective mental health interventions, the manipulators swooped in and weaponized our own neglected mentally impaired citizens against us.

What we don’t take care of will take care of us. That’s the whole reason that “being careful” is so important. “Being careful” isn’t about avoiding problems, it’s about being full of care. Being caring means being responsible for your community as well as yourself and your immediate loved ones. It takes a village, as they say, but if you neglect your village, you cease to be part of it.

We’re all different for a reason. Whether you’re a person of faith and see it as a component of our Creator’s Great Plan or you’re a secularist who sees it as a function of nature and evolution, or you’re like me and think that nature and evolution are parts of the Creator’s Great Plan, it’s an obvious fact that we’re all meant to be different by design.

The failure to appreciate the role that diversity serves for the balance of everything has led to efforts by a few unstable individuals who manage to acquire power and try to remake humanity over into a monolith, casting out those who, by design, cannot conform to their invented social hierarchies. This is the essence of discrimination. It’s what causes people with disabilities to be regarded as less than human.

Anyone who is discriminated against for any other reason should be empathetic to the discrimination experienced by people with mental disabilities that affect their behaviors, but our knee-jerk reaction is to be repulsed by the most extreme behaviors in which we see these people behave. These behaviors, while often intolerable and highly inappropriate, are still cries for help, we need to see them that way, and we need to collectively demand our elected officials to enforce the ADA and Section 504 when it comes to social media algorithms.

My theory is that, if we use the existing language of the ADA and, where applicable, Section 504, to compel social media platforms to stop preying on the weakest minds among us, it will not only create jobs for coders knowledgeable of the law, but also enforcement officials knowledgeable of the code. Rather than looking at the daunting task of coding the Code into social media platforms as an insurmountable challenge, it should be seen as a significant step towards true democracy that creates desperately needed jobs.

The solution would solve more than one significant problem in this country and serve as an example of adult-level problem-solving for the rest of the world. Marketing research tells us that customer loyalty is greater after a vendor has had to work with a customer to solve a problem than if there was never any problem at all. It’s not a source of shame for America to trip over its own feet and experience growing pains as it sheds the hypocrisy and anti-democratic practices of the past; what makes it shameful or not is how we respond.

If we can bounce back from the threats our democracy is facing right now with science across the board in every domain of need, including our nation’s ongoing mental health crisis, and enforce the ADA and, where appropriate, Section 504, on social media platforms, no additional regulations are necessarily needed. If any other regulations of social media become necessary above and beyond that, so long as the First Amendment is still protected while also preventing troubled people from getting sucked down the rabbit holes of conspiracy theories, we’ll redeem ourselves in the eyes of the world. At least, that’s my theory.

“Consequences” Doesn’t Mean “Punishment” in ABA

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34 CFR Sec. 300.320(a)(4)

Premack Principle

From Emotions to Advocacy

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Transcript:

Hi, it’s Anne with KPS4Parents. And I’m here again with one of our Quick-Fix videos, and today’s topic is consequences don’t mean punishment in ABA. And, what I want to focus on is a problem that I keep encountering in the field. And even though I’m able to successfully deal with it on a child-by-child basis, the systemic issue doesn’t seem to be going away. And so I think it’s something that all of us collectively need to be working on, just to make sure that the legal and scientific principles that apply are actually being applied in that our children are benefiting from the application of both.

And so I want to just get into this today. And hopefully, if you have any questions, of course, post comments, direct messaged us, send us an email, whatever, to ask your questions of us. And we’ll be happy to answer them to the degree that we can and refer you to other resources. But let’s go ahead and get into this.

So there’s two key considerations here that we really need to think about. And one of it is the legal side of it. The other side is the science side of it. And in terms of the legalities of it, it really I want to talk about what the law requires in terms of applying the science. And because that’s something that doesn’t get enough attention, I think in special education, but it’s at the heart of what the issues [are] that I encounter regularly.

So I know I brought up this particular piece of regulation in our other videos and in other posts and things we’ve done, but it’s because it’s so important. And it certainly is applicable here. And so I want to just recap it, and it’s Title 34, Code of the Federal Regulations, Section 300.320(a)(4). And specifically, what we want to look at, is this is the the part of the regulations that describe what’s supposed to go into an IEP. And, by no means is this everything that’s supposed to be going into an IEP. This is the part I want to focus on with respect to the issue I’m raising right now.

Basically, what this particular regulations requires, is that, in the IEP, you’ve got a statement of the services that the child is going to get; the specialized academic instruction, as well as the related services like speech and language, transportation, whatever. All of it has to be delivered according to the peer-reviewed research to the degree that is practicable.

And I don’t want to belabor the point of what “practicable” is supposed to mean, because honestly, there is no legal or professional standard. You can basically take the word to mean that you know that it can actually be done; you know that it’s achievable within the school setting. And so, when you’re talking about services that a child might need that are scientifically based, it’s specific to what’s going to give them equal access to education as that given to their peers who do not have disabilities, and so that’s what we’re focusing on here.

There has to be a scientific basis for the interventions being given. It has to be an evidence-based program. You just can’t have people in there making stuff up and saying, “Oh, yeah, this will work.” No! You need to be able to use stuff that has been proven to work, and is supported by evidence. That’s basically what 34 CFR, Sec. 300.320(a)(4) means; it’s that you’re applying the known science of what has been proven to work in order to teach children.

And that that shouldn’t be that complicated, but in this day and age of science denial and an abandonment of the rule of law, usually by the same individuals, it becomes a problem, especially if they’re employed within the education system. That’s why I keep, I think, running into this is because we definitely do have those folks who are deeply entrenched, and part of, you know, reforming public education is to get those people out of there.

So let’s talk about the applicable science, now that we know the law requires the science to be applied, and we actually know which law requires the science to be applied. Let’s talk about what the science actually is, when you’re talking about this terminology.

And so in this instance, we’re talking about Applied Behavioral Analysis now. ABA has become somewhat controversial in special education, because a lot of people don’t really understand what it is, least of all judges who try these cases.

And so let’s be clear on what ABA is. ABA is not a behavior program. ABA is not a intervention for children with autism. ABA is a science that applies to anything that behaves. That could be sea slugs; that could be computer programs; that could be your mother in law; t could be anything. It’s anything that behaves. You can use Applied Behavioral Analysis to figure out why a behavior has happened and the function that it serves. It renders behavior down to ones and zeros.

And so, the “one” is to get something and the “zero” is to get away from something or to escape something. And so, there’s only two sides to any behavior: acquire/attain or escape/avoid. That having been said, how do we figure out what’s happening, whether it’s an escape of behavior or an attainment behavior?

And so, one of the methods that’s commonly used in ABA is called ABC data collection. And this, in special education, is usually where I see things go immediately off the rails, when you’re talking about behavioral interventions for kids with special needs; that this ABC data collection is skewed because people are not properly using the terms as they’re meant to be used.

According to the peer reviewed research … according to the applicable science … everybody seems to get the “A” and the “B” of ABC, right, because there’s nothing that might contradict it or conflict with it. There’s not alternative definitions of these terms otherwise being bandied about in public education.

But when you get to the word “consequence,” in the public education setting, this is where people get really super confused. Because when you’re looking at the traditional punitive disciplinary model of how school districts have historically dealt with behaviors among students; it’s all very punishment-oriented. And so, a consequence is something that gets meted out by staff. It’s something that gets delivered by the personnel in response to the student’s behaviors. Like, “If you don’t do that, the consequence is going to be detention … or suspension … or you’re going to have to write 100 sentences … or there’s always some consequence delivered by some other person, and that’s a punishment.

That’s not what ABA is talking about at all. In an ABA, you have to remember, as a science, it’s using terms in a very neutral kind of way. And so, for example, “positive reinforcement” and “negative reinforcement” do not mean what most people think it means when you’re talking about ABA.

It’s like batteries; “positive” and “negative” don’t mean “good” and “bad,” when you’re talking about a battery. When you’re talking about the poles of the earth, you have a positive pole and a negative pole. That’s not good or bad; it’s just that they’re opposites of each other.

In ABA, when you’re talking about positive reinforcement, what you’re talking about is the presentation of something that’s going to encourage a behavior to happen, again; a reward of some kind for the behavior. And when you’re talking about negative reinforcement, you’re talking about taking away something unpleasant that increases the likelihood of a behavior happening.

So, for example, let’s say that you’re a child sitting in a classroom and there’s an alarm going off of some kind, and that alarm is very distressful to you. The moment that alarm gets turned off, that aversive stimuli is eliminated, and now the environment has become much more rewarding for you to be in, because that bad thing has gone away.

So negative reinforcement is taking away something you don’t want … a zero … escaping/avoidance. And, positive reinforcement is giving you something you do want … a reward of some kind … so, that’s the one. Again, either you’re getting something or you’re getting away from something; there’s the one or a zero.

And so bearing that in mind, “consequence” also does not mean what most people think it means in ABA. It’s not what other people do in response to the behavior. What other people choose to do in response to a behavior is called a “reactive strategy.” Now, whether it’s effective or not is a-whole-nother conversation, but someone else’s reaction is not automatically what the behavior seeks.

So, the consequence is what the individual is trying to make happen with that behavior; whatever it is that reinforces the behavior is the consequence they’re seeking.

So, for example, if you have a toddler climbing on the kitchen counter trying to get to the top of the refrigerator to the cookie jar, the function of that behavior is to acquire a cookie inside that cookie jar. And, they’re engaging in this dangerous behavior to get something that they want, without even realizing they could be risking their own safety, because they’re little and they don’t know any better. They’re just trying to get what they want; that’s all they’re thinking about.

So, the function of the behavior, the consequence that reinforces the behavior, is the acquisition of a cookie. “I’m going to climb among counter and I’m going to acquire a cookie. And that cookie is my reinforcement for having climbed on the counter.” Climbing on the counter is the behavior.

So, what triggered the behavior? What caused the child to say, “Hey, I could climb on this counter and get to this cookie jar and get a cookie out of it, if I really wanted to”? Well, usually, it’s being able to see the cookie jar; knowing that it’s up there. And so, the antecedent is witnessing the presence of the cookie jar, or proximity to the cookie jar, or observation of the cookie jar. It’s something that exists in the environment that when they see it, they’re like, “Oh! I want a cookie,” and then that behavior of counter-climbing starts. And if they get a cookie, that’s the consequence they were seeking that reinforces the behavior.

So, in ABA, “consequence” means the payoff that the behavior is intended to make happen, whether it’s escape/avoidance, or its acquisition/attainment.

And so, when you’re looking at a behavior intervention plan in an IEP, and they’re talking about, “What are the consequences of this behavior?” and it starts listing all the things that the personnel on the school do in response to that behavior, that’s not right. That’s not what “consequence” means in that context. That’s not the application of the science.

What they’re describing are the reactive strategies. “This is what we do when we see this behavior.”

Now, ideally, when you’re doing a behavioral intervention, the consequence the person is trying to engage in … the student … is not being delivered. It’s being met with a reactive strategy, instead, to redirect them to something else … to have them use a more appropriate behavior, like asking for a cookie instead of climbing on the counter.

You’re trying to replace that behavior. You try to teach a replacement behavior so that the need is fulfilled, or whatever that function is that they’re trying to meet, they’re using a more appropriate behavior to make that happen than the one that you’re trying to mitigate, if they’re, especially if they’re engaging in something that’s dangerous, or, you know, ii could compromise their safety. You want to teach them an appropriate replacement behavior.

Or, if they’re being disruptive in the classroom, because they’re getting up and running around. And, maybe what they really need to do is request a sensory break; they hold up a little break card, and they tiptoe over to the sensory area, or the sensory room, or they have some kind of, you know, fidget at their desk or something, that they can get their wiggles out without running around the room and disrupting everybody else.

First of all, you just want to make sure the consequence they’re seeking isn’t delivered. Because if the reinforcement they’re seeking is not forthcoming, then that behavior is not going to work for them anymore, and they’re gonna have to replace it with something else. But if you don’t teach them what to do, instead, whatever they come up with, and stuff, on their own, instead of what was is no longer working for them, if all you do is withhold reinforcement, there’s a really good chance, they’re going to find some other maladaptive behavior to replace the one you were trying to get rid of in order to still gain that outcome. And so you need to teach them a replacement behavior that’s more socially acceptable in that setting, to meet whatever want or need it is that they’re trying to … you know, to address.

And if, for some reason, the behavior is seeking something that’s inappropriate during that time, then it’s about teaching them how to delay gratification and wait until later, and they can work towards it. They can earn it, like, if what they really want is to play a game on their iPad, then that’s something they have to earn by doing something you want them to do. And then you use what’s called a Premack Principle, which is a first-then strategy where, “first you do this, and then you can have what you want.”

And so, you get them to wait until later to acquire that reinforcer that they’re seeking and the only way they can actually obtain it is by doing what you want them to do, rather than running around, you know. You don’t want them acting up in the classroom, what you want them to do is to engage in this replacement behavior and earn whatever it is they’re looking for that they find reinforcing. If it’s something like, you know, a tangible, like a food item, or a toy, or a game, or if they need a break, if their sensory system is overwhelmed, and they truly need a break, you want them to ask for it appropriately and not just get up and run around the room.

And so, it’s about teaching them skills to still see their needs met. It’s not about leaving them hanging and say, “You know that behavior is inappropriate. I don’t care why it’s happening. Whatever your needs are that you’re trying to address, just stop it.”

Well, how would you like it if somebody told you to stop meeting your needs? And why would you do that to a child and who’s doing the best they can with what they have to work with, especially if they’re disabled, and they’re struggling even harder to figure out what the right thing to do is? That’s why you’re there. You’re there to teach them that.

This is how “consequence” gets misused in the special education context, when you’re talking about assessing behaviors, because you can’t figure out the function of the behavior unless you understand what is trying to make happen. What is the outcome the individual is trying to achieve by acting that way? That’s going to tell you what the replacement behavior should be. So if a behavior … if a child is rolling around on the floor holding his stomach because he’s in stomach pain, then the replacement behavior is a verbal request of some kind, or some kind of request that’s not rolling around the floor and screaming and yelling, and asking to go to the nurse’s office.

But, if they’re rolling around on the floor, because they just don’t want to do the work, well, how you react to that is going to be very different from the kid who really does have a stomach problem and needs to go to the nurse’s office. And so, it depends on what they’re trying to make happen. If they’re calling attention to the fact that they’re in pain, that’s quite a different thing than if they’re just throwing a fit because they don’t want to do the work. And so your reactive strategies are going to vary depending on the function of the behavior.

And you can’t determine the function of the behavior until you ascertain the consequence they’re trying to achieve by engaging in it in the first place. What you’ll find are individuals in the public education system who are used to using the term “consequences” to talk about what they’re going to do to you if you don’t act right. That is a punishment model; it’s very punitive; it’s very authoritarian. And it’s not about teaching anybody anything. It’s just about throwing your weight around and showing them who’s boss, which, you know, do we really need one more asshole in the public schools?

That’s not how that’s supposed to be used. And if anybody’s doing that, then it’s highly inappropriate and it does not conform with the science and, therefore, does not conform with the law. So explaining those distinctions, I think, is really important here. “Consequence” does not mean “reactive strategy.” It’s not what you do as a staff person in response to the behavior; it’s the outcome the individual is trying to achieve.

So based on that, I mean, have you seen this in your child’s IEP, if your child has a behavior intervention plan, or has had one in the past? Does this sound familiar at all to you?

So let’s look at an example, because I think that that actually can be really helpful.

Okay, so here’s what I want you to look at. In this document at the very, very top, it says, “[Student] is [sic] very compliant and pleasant young man. [Student] is not currently displaying behaviors that are interfering with others [sic] learning.” So here we are with this behavior plan and, first of all that, you know, when we’re talking about an operational definition, why would you have a positive behavior intervention plan for a student who is not currently displaying behaviors that are interfering with others learning? That’s not the point.

The point of any behavior intervention plan is to address behaviors that interfere with anybody’s learning, and here the student’s behaviors are being off task and not engaging in the instruction. How that doesn’t interfere with learning is beyond me. And, while it’s true that other people’s learning may not have been disrupted by him staring off into space, that doesn’t mean that it wasn’t because that can be distracting when you got a neighbor who’s, you know, rubbernecking as he’s sitting right next to you, and you’re trying to focus. But, more to the point, it was his learning that was being disrupted. And that was the whole point of all of this.

So here we have, you know, some really vague descriptions of what exactly is going on with him and how it affects him. And the reality is his behaviors didn’t disrupt other people because he has a 1:1 aide who’s sitting in there making sure they don’t. And so again, they’re trying to treat the reactive strategies … the ameliorating effects of the mitigating strategies they’re using to somehow negate the fact that he has behavior challenges. He does have behaviors; that’s why he has an aide. What is this person doing with him that makes learning accessible to him, and prevents him from being disruptive to other people? And this document didn’t capture that.

The thing to notice here, too, is that there’s nothing listed with respect to consequences. The box there says, “Describe: Include antecedent/consequences as appropriate.” We have some information that describes when the behavior happens, or the conditions that sort of gives us a clue as to antecedents, but there’s nothing here listed with respect to consequences. And we had to fight tooth and nail to get the district’s BCBA to apply Applied Behavioral Analysis, and, even still, this was’t it. This was just a terrible document.

And so what you see here is not just the document itself, but also our feedback on behalf of the parent as to what it was going to take to fix it and make it right. We ultimately did get that resolved, but when you are being given IEP content as a parent, and they’re requesting your signature to authorize it, and, you know, you’re supposed to be signing off on this as somehow was beneficial to your child, and you consent to it, if what they’re giving you isn’t even sensible, it doesn’t make a lick of sense, and it’s not scientific, you shouldn’t be agreeing to it.

And, in California, which is one of a number of consent states where parent parental consent is required to even so much has change an IEP, much less, you know, authorize it for implementation, this is something where a parent can come back and say, like, “I’m not going to agree to this. This doesn’t even make any sense. Here’s what’s wrong with it, and here’s what you need to do to fix it.”

And so, this goes just to the point that you can’t automatically trust that the documents being prepared say what they need to say, even if the people who are preparing them have all these fancy degrees and credentials that supposedly make them experts. Again, this piece of garbage was written by someone with a BCBA. This person was board certified to apply the science of Applied Behavioral Analysis to the design and delivery of IEPs for special education students in conformity with 34 CFR Section 300.320(a)(4), and this is the crap we got.

Knowing that, you can’t just automatically go in and trust that these people are going to give you expert advice or guidance, or conform with the science that their expertise supposedly makes them experts in. You have to be very critical as a parent, that, you know, if you’re going to … if they’re going to do this, they need to be doing it in conformity with the law, which requires them to do it in conformity with the science. And so it’s as simple as that.

And yet, if you as a parent don’t know what the science is, much less what the laws are … and you’re the one responsible for enforcing the law, unfortunately, because that’s the way the law is written … it becomes your burden as a parent to learn these things so you can protect your child, as unfair as that is. This is a circumstance we currently find ourselves in and until the IDEA gets reauthorized in a way that makes parents not the only entity responsible for enforcement, this is the boat we’re in.

So, it’s not enough that they use the right form. That may be procedurally compliant, up to a point, ut it’s not substantively compliant because it doesn’t give the child what the child actually needs. As a parent, just because you see things coming across on official forms and letterhead, don’t automatically assume that they say what they need to say. That … you need to be able to go in and actually dig into the document … the language of the document … and make sure that it actually gives your child what it’s supposed to.

And so hopefully, that helps you understand this issue and what “consequence” means in terms of Applied Behavioral Analysis versus a disciplinary model of behavioral intervention. As you’re pushing for your child to get appropriate interventions in school through the IEP process, you make sure that you’re using the right language and you’re asking for the right things. And, you know, when somebody is blowing smoke, and you’re able to call them on it … in, of course, as dignified and respectful way as possible. But, you know, you’re not obligated to take a bunch of guff off of these people either.

So, hopefully that’s been helpful and we look forward to seeing you in our next Quick-Fix video. If this was helpful, please like, share … if you haven’t already, subscribe to our videos here on YouTube. And, if you want to be able to access this video after it expires off of YouTube, it will live on forever ad-free on our Patreon channel, which I’ll have links to everything below. So again, thanks so much for watching, and we look forward to seeing you again in a future video.

Poll for Jan. 15, 2022 Meetup

I have started an online special education advocacy group on Meetup, and our first bi-weekly meeting is scheduled for January 15, 2022. In advance of our first meeting, we’re collecting information about what will be discussed.

If you intend to participate in our upcoming meeting of January 15, 2022, or would otherwise like to inform the discussion, please answer the following poll question by no later than January 10, 2022:

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Which of the following issues do you think is the most important currently facing special education students right now?
Which of the following issues do you think is the most important currently facing special education students right now?

I’m looking forward to expanding our outreach to parents and professionals involved in special education through Meetups. Feel free to share this information with others who might benefit from it. ~ Anne

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With more than 30 years of field experience advocating for children with special needs, designing and evaluating individualized educational programs, supporting attorneys in special education and disability-related complaints and litigation, and filing complaints with state and federal regulators, Anne has insight into the technical requirements, evidence-based practices, and public education agency politics.

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Recent Uptick in Behavioral Challenges

Now that the Fall 2021 half of the regular school year has come to an end and all the students on my caseload are on Winter Break, I’m taking advantage of the break from back-to-back Individualized Education Program (IEP) meetings to reflect on the most serious issues I’ve had to deal with so far during this first half of the current school year.

While I’ve had to deal with a lot of different challenges, it is the impact that the lack of appropriate services during shutdown, from March of 2020 to August or September of 2021, that has hit hardest. It’s been the absolute most hardest on my students with intensive behavioral services in their IEPs who have suffered the most regression and lost educational benefits. School districts all over Southern California, and likely elsewhere throughout the State and beyond, refused to provide in-person services to children on IEPs who required them in order to continue learning during shutdown.

This was in spite of explicit changes to State law that mandated in-person services for those special education students who needed it and compensatory education for any special education students who lost educational benefits during shutdown. Not only were in-person services denied, compensatory services are still being denied as school districts act like their students’ regression has nothing to do with the fact that the districts failed to provide in-person services to these children during shutdown.

What was done instead? Aides employed originally to provide direct, in-person support to these students in the classroom setting were put on Zoom, Google Meets, Microsoft Teams, or whatever else platform their employers were using for distance learning as remote participants. How in the Hell an aide on Zoom was supposed to provide the supports necessary to facilitate the student’s participation in online learning via Zoom was anyone’s guess. It consistently failed to work.

Further, even though the new laws clearly made it an option, only one of my students’ districts hired a non-public agency (NPA) to provide in-person behavioral support services in the student’s home during distance learning so the student’s behaviors could not be permitted to allow him to escape/avoid the instruction. Instead, they rewarded his participation and prompted him to return to task when his attention wandered, so he was able to make excellent academic progress during distance learning.

What he wasn’t able to work on was his social skills with peers and adults in normal everyday settings. When he returned to on-campus learning, his classroom behaviors became increasingly challenging and the behaviors of the other students in the class became escalated in response. It eventually got so bad that the other students in his non-public school (NPS) classroom assaulted his NPA behavior aide because they blamed her for keeping him in their class. He triggered them that badly.

We ultimately changed his placement right before Winter Break started and a due process case for the involved district’s utter failure to offer or deliver a Free and Appropriate Public Education (FAPE) for the last two years is now pending. Settlement is entirely possible, which I can’t discuss in detail, and the IEP team has come up with a strategy to hopefully salvage his education for the moment, but this is a student who is able to meet academic standards in spite of his grossly impaired social skills.

Our concern is that he will graduate with a diploma and get arrested the next day for acting out in public. His behavioral needs have been exacerbated by shutdown because he didn’t get any instruction or practice in behaving in socially appropriate ways when in-person with peers or adults at school. In part, this was because the NPS he had attended had a “philosophy” that failed to conform with the evidence-based scientifically valid practices of the NPA that was providing his behavioral interventions.

As such, NPS staff regularly failed to abide by the Behavioral Intervention Plan (BIP) in the student’s IEP, much to the frustration of the NPA experts who had designed it and much to the danger of the Behavioral Intervention Implementation (BII) staff who was assaulted by my student’s classmates because he made them so upset. Rather than work collaboratively with the experts hired to address his behaviors using methods proven to work by science, the NPS staff would engage in ad hoc interventions based on whatever ideas popped into their science-denying minds in the given moment, none of which worked.

Most of the students in the NPS had mental and emotional health needs, many of which arising from past trauma, but our student had autism and just didn’t know how to read the room. It was dubious as an appropriate placement from the outset, but the ecological factors of the on-campus setting weren’t a problem during distance learning.

It wasn’t until our student, who not only has autism, but also ADHD, started attending on-campus, which required him to be in transport between home and school for a total of five hours per day, and then attempt to behave in a socially appropriate manner among other students with serious mental and emotional health needs, that things really fell apart. He might as well have been put into a rocking chair in a room full of long-tailed cats.

The harm was inevitable. And, as always, he’s being blamed and vilified while no one from his school district offers something appropriate to his needs. We’re hoping the interim placement he has for now will benefit him more than where he’s been, but it’s still less than ideal. It may take a judge to figure it all out.

I’ve had two other students on my caseload face expulsion just within the last few weeks. One student’s case just recently settled after the involved school district attempted to assert that behaviors that were clearly associated with the student’s disabilities somehow magically were not, during a Manifestation Determination (MD) IEP meeting.

The only way for a parent to appeal an MD IEP meeting outcome is to file for due process. Because the student is facing expulsion, the hearing is automatically expedited. This gives parents very little time to prepare for hearing, much less find adequate representation.

I was able to refer this family to an attorney right away who was able to handle the MD appeal via due process. We were lucky to find a really good attorney who could take the case right away and handle it. Most of my attorney colleagues are overwhelmed with the volume of cases they are getting, right now. The violations are everywhere, evidently, and this failure to provide in-person services during shutdown when they truly were needed seems to be a recurring theme.

This case settled because we were able to move quickly through the process and find a good attorney who could handle going to an expedited hearing if necessary or otherwise negotiate an appropriate settlement. Not everybody is having that same experience, these days. This family was lucky. The violations in this student’s case were pretty egregious and the attorney was able to convince the involved school district that it wasn’t worth going to hearing.

My other student facing expulsion still awaits a decision from school site administration as to whether the principal should just let the IEP team effect a change in placement for special education reasons rather than subject this student to expulsion proceedings. Again, the involved school district tried to claim that the student’s disability had nothing to do with the behaviors, which was simply ridiculous.

The student already had behavioral interventions built into his IEP to address the very kinds of behaviors for which he was in trouble. He had a history of escalating to the most outlandish behaviors he could think of to come right up to the line and just barely cross it enough to get himself kicked out of school to avoid the instruction. He hated it that much.

He had transitioned to his current placement in a Special Day Class (SDC) for special education students with behavioral challenges from a special school where all the students had behavioral challenges at the start of the 2019-20 school year and had been largely successful for most of that school year, until the shutdown started in March 2020. During that time, his targeted behaviors of work refusals and avoiding the classroom setting altogether were entirely reinforced by being stuck at home on the computer while the aides from his SDC were also in their own homes using their district’s online meeting platform.

There was no one in his home trained in the interventions that were necessary to compel his compliance with teacher directions. There was no one who could make him even login. He had a baby sister at home and his mother was not about to have him triggered into angry outbursts in the home by trying to convince him to participate in the instruction with a baby in the house. Further, his mother was medically fragile and required multiple surgeries throughout the shutdown and afterwards. She was in no position to handle the angry outburst of a frustrated teenager with no impulse control due to ADHD struggling with the work because of a co-morbid learning disability.

We have a complaint pending before one of his school district’s regulatory agencies in response to its mishandling of his behavioral needs to date. He is now pending expulsion for a behavior we’re fairly convinced he engaged in so as to be kicked out of school. We don’t believe he ever had any intent to hurt anyone, but he did enough wrong for someone who doesn’t understand the function of his behaviors to think he might pose a credible threat. Law enforcement determined he posed no threat. It appears that district personnel may have exaggerated the severity of the behavior on purpose to justify expulsion.

All that said, the expulsion case may be dismissed if the district agrees to simply let the IEP team refer this student back to his previous placement at the special school. It was successful in preparing him for his transition to a comprehensive high school placement before shutdown; it should be able to return him to that state and help him transition back, again, with success. We also have a ton of new assessments pending to figure out what the most appropriate IEP for him should be, going forward.

This situation may deescalate before it has time to turn into a full kerfuffle. If we can all just agree to work together to address this student’s serious behavioral regression through the IEP process and avoid the expulsion process altogether, particularly given that this district is being looked at very closely by one of its regulators right now for failing to adequately support this student thus far, already, we can implement a solution that will eliminate the parent’s need to pursue accountability.

The goal isn’t to nail the school district’s hide to the wall; the goal is to get the student appropriately served as quickly as possible. Nailing hides to walls should only take place if it’s absolutely necessary to get a student appropriately served as quickly as possible. It’s a last resort option.

I have yet another student whose case is pending settlement, hopefully. It would be foolish on the part of his school district to allow it to go to hearing. I can’t discuss much about it while it’s pending settlement, but suffice it to say his school district totally blew it by failing to provide in-person behavioral services and supports during shutdown.

He has a host of learning challenges including partial vision loss, severe autism, intellectual disability, a seizure disorder, extremely limited communication skills, and self-injurious behaviors that frequently result in property damage in his home. His windows now have Plexiglas® panes and the dry wall in his home has been replaced so often, his family has lost count. He has made frequent trips to the emergency room and urgent care for medical treatment after hurting himself during an outburst. He has hurt his petite mother by accident.

He’s now a young adult who is still eligible for special education and he’s had these behavioral challenges his entire life. He’s been a student of the same school district his entire public education career. It’s not like they don’t know what he needs. Before shutdown, he received intensive 1:1 and 2:1 behavioral supports throughout the school day to keep him safe and engaged in the instruction. He got none of that at home during shutdown.

His mother was left to be his 1:1 aide support during distance learning over a computer while his actual aide support staff stared back at him from the screen from their own homes. He was immediately triggered into violent outbursts because he didn’t understand why he wasn’t at school with these people instead of looking at them on a computer screen. His participation in distance learning had to stop immediately for his own safety and that of his mother. It’s been a struggle ever since to get an offer of appropriate services in his IEP as a prospective matter of FAPE, much less with respect to all of the compensatory remedies he’s due.

This student’s case has been referred to a different attorney than the one mentioned above, but also an amazingly talented and smart one. Because settlement terms are still being discussed, I can’t speak much further to the matter, but I think the point is made that this is happening way too much. We’ve got too many kids who didn’t get what they needed during shutdown who are now owed compensatory remedies and they have until March 2022 to file for due process on their claims.

Special education attorneys who represent families are working at capacity with respect to their caseloads. That said, there have now been enough cases litigated and settled since the increase in claims began that openings are starting to come on many caseloads. Others are bogged down by appeals, which are largely occurring in the federal District Courts.

Some attorneys are having an easier time these days than others, just depending on whether they get good judges at the due process level, or have to work the appeals system before they get to someone willing to take the time to really listen to the arguments and examine the evidence relative to the rule of law and applicable science. That’s always the chance that attorneys take with these cases, and it’s not fun to work the appeals, I promise you.

I’ve provided paralegal support on cases all the way up to the 9th Circuit Court of Appeals, and there is nothing more tedious than a Table of Uncontroverted Facts, because there are always facts that become controverted between the parties. The back-and-forth between the parties about what facts were agreed to, which ones were disputed, and all the references to the evidence and testimony on the existing record from the original due process case and previous appeal to the District Court that supposedly supported each party’s asserted facts, became one of the most exhausting exercises I’ve ever engaged in as professional. I have ADHD – Inattentive Type, myself, so trust me when I say it was grueling.

Litigation should always be the very last resort to solving a special education problem, but these days it’s been necessary. For those of you finding yourselves in similar circumstances, I’d like to share a decision from the California Office of Administrative Hearings (OAH).

I downloaded the PDF of this decision just in case it ever gets taken down in the future, and have uploaded it to our site. Click here to download the PDF of this due process decision from California in which the Administrative Law Judge (ALJ) found in favor of a student who was deprived of educationally necessary in-person behavior services during shutdown, if the link to the OAH site doesn’t work. In this case, the ALJ ordered compensatory services as remedies to the student.

If this decision can help you argue for resolution to your own child’s lost educational benefits during shutdown, whether via due process or just a sensible discussion with your school district’s representatives, it will have served its purpose as a persuasive authority on the subject. If you find it necessary to hire an attorney to file for due process over shutdown-related deprivation of educational benefits, be sure to share this authority with your attorney. They may have very well already seen it, but if you can relate the facts of your own child’s case to the facts of this due process case linked to here, you will help bring your attorney up to speed regarding your child’s claims, so you can timely file your case before March 2022.

You may also choose to use this decision to support your arguments as you advocate for your own child in the IEP process as a parent. If you share this decision with your school district’s IEP team members and relate the facts of your child’s situation to the similar facts in this due process case, presuming your child’s case follows a similar pattern of a denial of behavioral services from his/her IEP during shutdown, your school district may be compelled to work with you rather than have you lawyer up and then have to deal with the costs of a legal action.

Parents’ attorneys’ fees and costs can be recovered from the offending school districts as a condition of settlement or upon prevailing in due process or appeal. School districts are smart to work things out through Informal Dispute Resolution (IDR) Agreements or Confidential Settlement Agreements, if they can. The costs of due process and any subsequent litigation are far too great for taxpayers to fund when those dollars could be spent on educating children, instead. Spending education dollars on fights over the deprivation of educational benefits just adds insult to injury, honestly.

The evidence is increasingly making clear that far-right politics have way too much influence on public education at various levels of government, from local to state to federal education agencies. This is how public service was infiltrated at its weakest point. Extremists would get elected by an uniformed or misinformed electorate, then hire their cronies to work for them within their agencies, undermining the efficacy of local government while mishandling the finances in order to “prove” that government doesn’t work while arguing for increased local control and reduced regulatory oversight.

Then they pay themselves more than they’d ever earn in the private sector where job performance matters as they slash resources to those expected to actually deliver on the agency’s mandates who work beneath them. This is the climate in which special education violations occur. This is why public agencies defy the regulations to the detriment to some of our most vulnerable children, many of whom coming from low-income households whose parents are often at a loss as to how to fight back. Most parents won’t do anything because they don’t know what to do and don’t realize how badly their children are being hurt in the long run.

If you are a parent whose child did not get appropriate services during shutdown, and who has regressed and may require compensatory services to be brought back to where he/she should be in school, right now, you’re not alone. Whether you negotiate resolution on your own with you local education agency or hire someone to help you, know that many other parents have already started to fight this same fight before you, and some really helpful decisions are coming out of the various venues that can help bolster the arguments you and/or your representatives make on behalf of your child.

I hope this helps you put your own child’s situation into perspective and gives you some ideas on how to go forward in the most constructive and least adversarial way possible. I can only imagine the other families’ stories that out there similar to the ones I’ve described and the case captured by the decision linked to above. All of you are in my heart and I’m praying for you all.

#specialeducation #disabilityrights #disabilities #childrenwithspecialneeds #positivebehavioralinterventions #positivebehavioralsupports #appliedbehavioralanalysis #evidencebased #evidencebasedpractice #regulatorycompliance #compensatoryeducation