Geralyn Arango Deely (00:13):
Hello, family member. Have you traveled on a plane with your adult with an intellectual disability? I have not in a long time and I'm a little nervous. This episode is about getting ready for a flight that my Nick does not want to take. How can we turn this trip into something positive or at least not too awful?

(00:38):
Update, update, gotta update this. As of this recording, I'm gonna update my intro to tell you that Nick did okay with the flight. How did that happen? And was fear of flying the real issue for Nick or something else? Something more day to day like just avoiding demands or requests or anything, especially those that are made by me, mom, and to a lesser extent other "authority figures"? There are a couple names for that. We can take a look at that. It feels sometimes like "no" is the answer to everything I say, but what is there for me to learn about myself and my mindset on Nick's and my parallel path?

(01:25):
And how about you? You been there, done this? Nick's reactions to this trip, they were real. And his physical accessibility issues likely make the intense sensory challenges of navigating an airport even harder than they are for me and the rest of us. So let's talk about fear, resistance and fostering a sense of control in challenging situations like getting on a plane to see your ailing grandmother and my own need for a sense of control. I'm gonna share some resources that help Nick and me along the way.

(02:05):
Hello and welcome to episode four of season six of Our Parallel Paths: A Future for My Loved One With a Disability... And for Me! My name is Gerry, Dr. Geralyn Arango-Deely, and this podcast is about just what the title says, the parallel paths of family members and their loved ones with intellectual disabilities. I'm a parent myself and I always have questions.

(02:30):
So let's nurture and support ourselves as we nurture and support our loved ones with intellectual disabilities because there's more than one path, more than one future to talk about, and that's why we're here.

(02:42):
So a little disclaimer before we begin for an episode like this. Um, this particular episode is for educational purposes. It is not therapy. It is not medical advice. Experiences vary widely among individuals and even among between all of us listeners to the podcast. So this is just a story along Nick's and my path. And I hope something here resonates with you.

(03:07):
As you may remember, I have been married twice. I was widowed in 2014, but through the years I have kept in some touch with my first husband, Al's family. Al's mother, whom we all call Abuela, which is Spanish for grandmother, flew up from Florida and lived with Al and me for months at a time on and off when the children were young. Just the loveliest lady. The gentlest presence. I was so lucky to have a mother-in-law who was like low-key helpful with the house and the kids and even the cooking while I, Al and I went to work. Al also has an older sister, Cecilia. We have seen both of them on and off through the years since Al's death, for happier occasions like Abuela's 90th birthday back in 2018, do the math on that, party we had before my daughter, Courtney's, deployment to the Persian Gulf, my first granddaughter's, Vivi's christening and a visit to Florida that my daughter, Courtney, and I took with Viviana when she was two to meet her Abuela, actually her [foreign language 00:04:19], her great-grandmother. And of course get some Colombian food and lots of loving just like her mother and her uncle had back when they were little. We invited Cecilia to the christening of my second granddaughter Celina, but realizing like that nine, at 98, Abuela's air travel days were likely over.

(04:40):
So RSVPs started coming back about the christening, but no word from Cecilia. As the day got closer, I reached out to Cecilia only to find that she could not come because Abuela was not well. She had fallen three times and she was very fragile. So I knew what my kids and I had to do, it was time for us to fly to Florida ourselves to see Courtney and Nick's Abuela and Vivi and Selena's, [foreign language 00:05:12], their great-grandmother, and maybe for the last time.

(05:15):
Now my first anxious moment about planning this trip was that I was going to have to tell Nick that we all needed to fly to Florida. Abuela was devoted to her Nicolas, whom she had seen through a lot of the babyhood emergencies that I've mentioned sporadically throughout the podcast. There really wasn't going to be a choice I could offer Nick regarding making this trip. And probably that was the first thing I did wrong or maybe needed to handle differently because I just said, "We all have to go." Not "Nick, would you like to go?" Or "Here's, here's a choice. You can make this choice," because I didn't have any choices. My husband, Michael, was going to Massachusetts while we were gone to see his own mother. So, you know, I kind of, kind of half-baked through in, "Would you like to go see somebody else's grandmother or would you like to see her own?" Um, which was a cheesy choice, but Nick did prefer seeing his own grandmother.

(06:21):
So Nick's challenges in this moment I think were first of all, processing this change in routine, processing this new information and communicating his thoughts and feelings and anxieties. Because the first thing I said that he said, excuse me. The first thing he said was "No," he's not going, which I have come to expect. And there are a couple things though that that "no" might have been about. First of all, control. "Mom, you are telling me that I have to do something I don't want to do. And you are going to break my routine in order to do it. I am going to miss my work. I am going to miss hanging out with my friends. I am going to miss doing things with my staff." And Nick is so flexible sometimes in there, but those things are real changes, real disruptions to his routine and his life. And it was not just one of them, but all of them. So as I'm presenting this information, my attention is mounting. And of course, inside of this, there's also a possible anxiety of flying, a fear of flying. And the idea of what getting on a plane was going to be about, you know, confinement, tight seats, your ears popping, turbulence, because lots of people are scared of flying.

(07:58):
I mean, I'm thinking, so I though back to our trips, trips that Nick and I had made in the past. And you know, we got there, but we went to Florida actually for Abuela's 90th birthday. So that was 2018. What was tough, it was, that was Michael and Nick and I. What was tough was how slowly Nick moved through this hustling, bustling airport, Philadelphia airport. Was it Newark? I don't know. And how Michael and I were dragging our luggage, but turning back and looking for him, turning back and looking. We, and even we were trying to move slowly in that moment ourselves. It was important at that point to be sure that he had, Nick had his cell phone charged and with him. I still wondered, would he know what to do if we were really separated? We, we've talked about it, you know, but it was almost like I love saying, talking about the dignity of risk, but it was almost like the risk of the dignity of risk, letting him kind of fall back behind us and then try to catch up. But on the whole, we got on the plane and I don't remember much being a problem being beyond that.

(09:12):
Before that, a couple years before though, we went to New Orleans to meet up with my sister Gail. And that one was hard. He ended up sitting at the gate refusing to get on the flight. And as passengers are getting on, we're boarding section four, section three, section... All the sections. And we are the last of the passengers and I mean the last, no one else is sitting there at all. He said, "Are we gonna get on or not get on?" Tick tock, tick tock, you know? So I ended up desperate little Hail Mary play. I ended up calling my sister, Nick's beloved aunt Gail, and she sort of kind of rah, rah, rah on her end. And that helped a bit. And this was joined by the crew with the rah, rah, rah at the gate. And so people at the gate were saying, "Come on, Nick, you can do it. Come on, Nick." You know? I was kinda not entirely convinced that we're gonna get on that flight, but all that attention did jolly him onto the plane. I, did I order alcohol when I got on? I forget.

(10:17):
So the idea of getting Nick back on a plane was scary because I just did not know what to expect. But I had to get past no. And figuring out how to get past no, get him on board with this, no pun intended and get on a plane. What was I seeing? How do I respond? How do I smooth these rough edges that are there? Because this was the weird part. Sometimes Nick would say "yes" or have no response. I kind of mention it, he doesn't really respond or nothing major like, "Yeah, yeah, no big thing." And I'm like, "Got it. We're home free. But then mention it again later on or another day and back to a hard no. "No." And then other times he would tell people, "Hey, I'm going to Florida." So, you know, totally confused.

(11:04):
For me, first thing was to address that "no". Because I have to acknowledge the things that really were there, things I'd seen before. And perhaps Nick's sense of a loss of control over his days. I mean, here's me thinking, "Nick, I know it's a change. It's not the usual things we do." And you know, what about talking to him about flying? Because I'm actually okay with flying, but I don't love it. Maybe for the same reasons that Nick doesn't love it. So "Hey, Nick, you and me, can we do this together? You know, like, you help me, I'll help you?" And the, the routine break, "Yeah. I know you're gonna need to be a little flexible." And I, I just didn't know what else to say. "Nick, can I show you some pictures of the hotel and the pool on the roof? I know you love a hotel."

(12:02):
Quite honestly, getting told no to almost everything on a pretty much daily to weekly basis. It's like a reflex for Nick. And just opening up this door toe can be really disheartening for me. I, and so, you know, I have to go and, go and look things up and try to get a grip on things beyond my own understanding. And so I found that looking at Nick's response through the lens of traits associated with something called pathological demand avoidance, AKA persistent drive for et- con- persistent drive for autonomy. I found that kind of helpful. This is not a diagnosis in the United States, but it does have traction in the UK, especially regarding people with autism. I would say that this should be widened, that net should be widened because I can see my non-autistic son in the traits. So what I kind of came away with was that it was more like a really sensitive nervous system. And as I kept on looking into this term, I found something called pdanorthamerica.org.

(13:26):
And they had a 10 page guide to PDA, pathological demand avoidance. And I feel really good about sharing this with you in the show notes because there was a lot in that guide. And I think all of us on the path may have seen some of these things in our loved ones. There, so much in that guide that we can use to address our loved one's concerns and just keep our momentum. There's a part of the guide that speaks to us as the family members from the type of language to use to keep things from getting volatile and reminders of the importance of me keeping my cool. I try to think, even in my frustration, this isn't personal, you know? It's not about me.

(14:14):
So I have to, and I literally do, have to pause, stop and stop myself to not react to what's the "no" or whatever it is that's coming at me. And I need to offer what choice I can. And so I couldn't offer, "You wanna go or not.?"So I'd have to find the little choices along the way, you know? Speaking respectfully to him all the time using, and, and I like to think of this as kind of using it, calling it relationship collateral, but using the relationship that Nick and I do have. And part of that is humor and empathy and trying to presume competence because I'm thinking, "Oh, he just doesn't understand." And it's like, "How do I, how can I be sure?" Maybe he does understand. It's not that the problem is stemming from the fact that he doesn't, but that he does. And that was really gonna be key because I had even more to tell him within that choice that I could not give him. And what the next piece of news was, was that his grandmother was not doing so well.

(15:29):
Here's me again, trying to provide the information and trying to respectfully present it. And going from there like, okay, "Nick, do you remember Abuela? Let's look at some pictures. Here's the last time you saw her, which was eight years ago. Um, you saw her for her birthday. You saw her for the deployment party. So she's not a ghost. You know, she's not a stranger to you." So here I am. Gonna have to be honest and tell him why we are going to see her. That yes, there was gonna be some fun in this. You know, "You get to stay in a hotel, it's got a pool, there's gonna be lots of food," but we were really going because Abuela wasn't well. And she had fallen and I didn't go into the falling part, but I said, "Abuela is not well. She's sick." And Nick could, I think, kind of grasp that because that's what came up when he was telling people about this trip. He said, "Abuela is sick." And Nick has seen sick before. Nick has seen death before. Nick is not a fan. I mean, who's a fan?

(16:42):
And then there was the flight. A first way to address the problem of getting on the plane, I thought about the first things I thought about was because of my background in special education. I would look into social stories, which are a personalized way, and many of you may be familiar with this, to address concerns and offer solutions in a story format. So I could create a social story for Nick. I could adapt one for Nick that was already in existence. So, you know, in my brain, I'm kind of breaking out and breaking down what does the trip consist of? You know, we talk about this we pack. We have all the pieces before we get to the actual plane.

(17:28):
So my first stop and I was pleasantly surprised by places that I found social stories that I could either use or work with. For example, we are in Philadelphia area. So Philadelphia Airport actually had a social story that spoke to this issue about being a little scared of flying. I saw another one on United Airlines. And I mean, of course there's going to be stories on disability support websites. And then I found one on Autism Tennessee and there was a social story for adults. And I was able to use some of that as a reference just to help me to parse out like what were all the pieces of this trip, the plane part and the airport part and the packing prep part. So I could use that as a reference to help me to organize my own story. So the stuff was out there. Yay. Now Mr. Rogers says, "Look for the helpers." And I found a helper in Nick's speech therapist, Patrice. And you met her back in the earlier seasons when we talked about speech therapy for adults.

(18:36):
Patrice was kind enough to search out and find a checklist that we could use to work through packing all the way to landing. And it had visuals too. She practiced with it with him and they talked about it. And I believe we also looked at a resource called Teachers Pay Teachers. And that's a resource for of course anybody, but teachers creating materials that were just kind of too good not to share. And so you're able to get on and get stuff cheap, first of all, free sometimes, but materials that have already been thoughtfully prepared by education professionals that you can use or adapt and they are really, really reasonably priced and just downloads. So that was another, another place to get some resources to just consider what, am I going to use this? Am I going to adapt this? Or can it help me to break out what the pieces are of what we're addressing?

(19:33):
Another resource that I found was the TSA Cares Helpline, the Transportation Safety Administration Helpline. You can contact them at 855-787-2227. And I'll put that in the show notes too. You can contact them about three days before your flight and you can arrange for a passenger support specialist to guide you through security and kind of minimize the sensory disruption. In the end, we did not use this, but it was really good to know that it was there if we did.

(20:09):
The five of us did take advantage of pre-boarding. We were credi- cr- crew Nick, me, his sister, Courtney and her five-year-old and less than one year old on our lap. And as you know, planning reduces anxiety and it kind of helped me and I think it kind of helped Nick. Predictability creates a sense of safety. Then there was me. Was I making the trip too predictable or could I have done more? Was I talking about the trip too much? You know, I'll always kind of ruminate on things like that. Anyway, we set Nick up with downloaded big time rush episodes and a headset for his phone. We set Nick up with gluten-free goodies that I smuggled onto the plane just in case there were pretzels, which of course there were serving pretzels. I prayed he wouldn't have to use that tiny bathroom because his friend said he got locked in the tiny bathroom once and I was just, all of a sudden that became something I had to think about. I, I think I was more anxious when we had turbulence than Nick was. And so Nick, as always, surprises me.

(21:24):
And Florida was hot when we got off that plane, but we got off in Florida. The next stop was the off-premises car rental dealership, which was a shuttle ride and dragging the air, everything across the airport to get to the shuttle. And then finally to the hotel moving slow, but Nick made it all the way.

(21:45):
So we called Cecilia to let her know we'd arrived. She told us that Abuela was sitting beside her just days before, had slipped into unconsciousness and was now on home hospice. Are you sensing what I'm sensing here? This visit was not a visit we could have put off, not a visit that I could have cajoled Nick into overtime. This had to happen now. This visit was one I'll never regret. I don't think my daughter, Courtney, will ever regret it. And I hope Nick won't regret it either. We were with Abuela as she passed three nights after we arrived. We all got to talk to her and all prayed for her, prayed over her. And when she did die and Nick went and sat in the car with his cell phone for the rest of the night, I didn't try to stop him from doing what he needed to do to feel some control of his emotions and what had just happened in the house. This response was Nick's choice and he deserved to make it.

(22:52):
So a few thoughts in closing. This trip reminded me that, that fear of flying is often about uncertainty and, and just feeling vulnerable to like what, not getting a choice. It's not just about the airplane. I mean, I, I think I always have a little fear of flying, although not to the same degree as Nick's. And I think my fear was more about how the whole thing was gonna go down. I felt uncertain and vulnerable, but for different reasons than Nick did. And I had to be really aware of trying, anyway, not to project that onto Nick. Another thing I think about is that a need for control should be understood and, and accommodated as best we can rather than fighting it. And I will always struggle with that, but I have to keep that in my head because it applies to Nick, of course, you know, that we can understand it and accommodate it.

(23:55):
But I had to address my own need for control in this potentially volatile situation. You know, one where I had had mixed results with Nick and was so used to being told no, that I had to really stop and think of how I would present myself as well as in the situation. For people with PDA, pathological demand avoidance, pervasive drive for eco- auto- autonomy, um, traits, preserving autonomy and the feeling of autonomy and reducing what Nick perceives as demands can make a significant difference. Going from home to plane, from plane to hotel, from hotel to deathbed, my God, I did my best and I think Nick was doing his best too.

(24:45):
So, listeners, what are your travel stories? What has worked for you and your loved one on the parallel path? Please share on Facebook or feel free to comment right into the podcast. And I wanna thank you for taking time to listen to my story on today's episode of Our Parallel Paths. I hope that you will certainly, uh, check in on the Facebook page or comment into this podcast about your own stories. And I hope you will return for more stories, more interviews, more conversations with people like you and me who are on the path. I want you to know we're not alone. And so I hope that we will see you again, listen and talk again on this podcast, which is produced by Networks for Training and Development. I'll see you next time. Take care.