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A lesson in empathy: Dr. Rachel Potter brings her students on AotS cruises to assist staff with special needs families

Rachel and Eric Potter

How do you teach empathy to students embarking on a career working with the autism community and their caregivers? According to Dr. Potter, it's not something that can be learned from a book, but it can and has been cultivated by exposing Master-level students to families on an Autism on the Seas family cruise.

We interviewed Dr. Potter to share her vast experience as an educator, mom of a teen with autism, frequent AotS cruiser, and volunteer group leader and staffer with AotS. Dr. Potter started her career as a special education teacher and then later became a board certified behavior analyst. She teaches courses that prepare future teachers in special education, including certification in autism spectrum disorders. But she says the program at Mary Baldwin University that is really her baby is their Applied Behavior Analysis program, which is centered in preparing practitioners to work with individuals with a variety of developmental disabilities, including autism.

Listen to our interview with Dr. Rachel Potter

AotS: How did you initially get involved with Autism on the Seas? 

Dr. R. Potter: Great question. I first heard about Autism on the Seas from one of my students who was completing an assignment for one of our autism certification courses. They were asked to look into resources at a national, state and local level that were related to special needs families and recreation. One of my students turned in her assignment about Autism on the Seas. She hadn't any personal connection herself, but came across it doing her research on the internet. So the professor in me, of course, assessed her assignment. I'm not sure, she probably got an A. Then the mom in me thought, "You know what? My son is seven and I have never taken a family vacation because I'm terrified. I'm worried my son's going to run off or have a tantrum or get lost, or people are going to look at me funny, or people are going to judge me, or it's going to be a miserable experience." And this is coming from somebody with expertise in that area. I can only imagine what that might be like for a parent or family who doesn't have that background and experience.

So we took our first family vacation and Eric's younger brother, who's neurotypical came along and the first day was terrifying. I thought, "Okay, my son's gonna jump overboard and he's going to drown and this is going to be horrible and I've just wasted money and this is a miserable experience and what have I done?" But within hours I knew that it was the best decision I could have possibly made. 

AotS: What was it that made you settle down?

Dr. R. Potter: Truly, people and relationships. I think that's one of the things that Autism on the Seas does exceptionally well and takes a great deal of pride in --  the relationship that the staff and the group leader build immediately with families, that creates a sense of trust and community. It was exactly what I needed at that moment. I suddenly knew that I was surrounded by people who, not only other families who weren't going to judge me because they've experienced this themselves, but I was also surrounded by people who were going to help me and that it was okay for me to ask for that help and ask for that assistance. On that first day, I know I cried out of frustration, but I also cried out of joy by the time the day was over.

AotS: So you had that experience and then you got involved on the other side assisting parents, like yourself, as an AotS group leader, right? 

Dr. R. Potter: I did. Because I saw the alignment between my professional world and my personal experience through Autism on the Seas, I wanted to engage in service to the organization and that seemed to be a good fit for my skillset and my work schedule. So for a number of years, I served as one of the team group leaders, leading staff volunteers to support families and serving as that liaison between the shifts and the families and making sure that everybody's needs are met for the duration of the vacation. I continue now as a volunteer staff member to provide those same services in a slightly different role.

AotS: What did you learn by working with other parents who have children with disabilities?

Dr. R. Potter: It's brought me into my own sense of empathy in terms of understanding just how different every child and every family situation is. We have had families sail with groups that I've supported with children on the autism spectrum as young as two, and as old as 42, and with varying levels of needs. And for me, I get great joy out of that variety and out of being able to work with each family and each child or adult child to make sure that they're having a very safe, first and foremost, but secondly, a fun and memorable experience.

I think as a group leader, in particular, you're prioritizing not just the child's needs, but truly the needs of the entire family. Because it's the family that's the client, it's not just the special needs child. You want that family to leave, not needing a vacation to recover from their vacation and that's what I remember.

So when I think about my AotS experience as a parent, I remember walking away from that cruise, not needing a week to recover, which is what I thought I was going to need. I wanted to replicate that.

AotS: What was your objective in bringing a group of your students on an Autism on the Seas cruise?

Dr. R. Potter: So we looked at that a few years ago and I had a serious conversation about which students would be best suited to this opportunity? We focused primarily on students who were in our teacher education programs or occupational physical therapy program. Initially, in developing the program, I think the intent was to supplement a course that they were taking related to autism. And they do take that course associated with it where they do some work ahead of time prior to the cruise and it sort of culminates with the cruise experience.

But when it comes down to it, the cruise part of that experience isn't about learning about autism. They've gotten that from the textbook. They've gotten that from their lecturers. They've got that from listening to me drone on and on. But what they get out of that experience is a tremendous sense of empathy for these families and for the siblings and for these individuals that they're working with that cannot be replicated in a university classroom nor can it be replicated in a school-based practicum, for example. So when they read in a textbook why a family that has a child on the spectrum might be hesitant to go into the community, to go to a grocery store, or to go to a restaurant, they can see that in real time when they're in the dining room on the cruise ship or when they're at the beach assessing families. They can truly understand through experience and not just through what they're reading. That lesson in empathy is absolutely the most important thing that my students gain when they participate in supporting the staff who are providing that level of service for these families.

AotS: Do you have any other words of wisdom for families out there who may be in that same position where they still haven't cracked the vacation code? What would you say to them?

Dr. R. Potter: You know, I think having an opportunity to interact with families who have experienced this could be beneficial. Whether it's listening to a conversation like this, or interacting with other families on Facebook who've experienced Autism on the Seas, or even calling the office and asking for a referral to another family. There are so many families who have been touched by this experience who have said, "Please feel free to have the hesitant family call me."

And I think the organization is happy to make those connections. If somebody would feel better talking to somebody who's experienced a cruise, while still recognizing that every family is going to be different, it's potentially very helpful.

One of the things that's so great about Autism on the Seas is the cruise experience itself can be individualized based on what a family needs or doesn't need, or what level of service they want or don't want, or what a child's interests are or aren't. That individualization I think really is what makes this so much more than just a group organized cruise event.

AotS: And I think your own son has made some big strides, right? The last cruise you took was just this past March and you gave him some pretty liberal freedom, right?

Dr. R. Potter: I did and that was my first time doing that. It was probably his sixth cruise, all with Autism on the Seas. That was my first time saying, "You know what, I'm going to let you go use the restroom by yourself when we're at dinner or I'm going to let you stay in the pool while mom walks down to one of the shops for a few minutes or I'm going to let you go to the arcade for an hour by yourself."

Was I a little nervous about it? Sure. But I know that he's safe and I know that he feels a level of comfort on cruise travel because he's experienced that. I also know that at some point he's going to come across somebody in an orange shirt that says Autism on the Seas staff and he knows those are his go-to people. And if he has a question, he can go to them. He knows that he can go up to any of the cruise ship staff wearing a name tag if he doesn't know where he is or he has a question, and he can do that and have that freedom.

And you know what? He did fantastically. While I was nervous giving him that level of freedom, it was the best thing I could've done for him.

AotS: So has any of that carried over? Has any changes in behavior carried over post cruise?

Dr. R. Potter: I would say maybe more for me than for him, which is good, right? So I think in my own behavior and level of trust, he didn't get treated with a great deal of trust, so it has changed in our home and in our community what I'm allowing him to do. I will now leave him at home for a longer period of time while I'm running errands. I will allow him to, and this was a huge one for me, use the microwave when I'm not in the house. Now, I can guarantee you the first few times he had to text me afterward to say, "I finished using the microwave and the house isn't on fire," because I'd be sweating bullets.

I'm starting to allow him to experience that independence so that he can practice that and learn that and the cruise was an opportunity, not only for him to demonstrate that, but for me to kind of let go in a situation where I knew I had support if I needed it from the Autism on the Seas' staff. I knew he was going to be safe and I knew I had those resources available to me. So, I think my behavior may be changed more than his.

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1190 Hits

Autism on the Seas Guest Turns Vlogger after First Family Cruise

Jana, Joseph, Carson, and Chris Miller

Chris Miller lives in Katy, Texas, with his wife, Jana, and two sons, Joseph (12) and Carson (8). Chris tells AotS about his family’s first cruise with Autism on the Seas and how he became inspired to start Autism Anywhere, a Youtube channel that offers travel tips and advice to families with special needs children. Chris features first-hand experience by sharing his own family’s vacation adventures with their special needs son, Joseph.

According to Chris, Joseph’s autism is quite severe. He's mostly nonverbal, but has some echolalia, where he'll repeat things from TV shows, etc. Chris says, barring the occasional meltdown, Joseph's a great kid.

LISTEN to our podcast interview with Chris Miller, AotS cruiser and vlogger at AutismAnywhere.com

AotS:     Tell us about your new YouTube channel and soon to come website, Autism Anywhere. Is your mission to share your family's experiences so other special needs families can overcome their apprehensions about travel?

Chris Miller:        Exactly. We're big proponents of getting out with your child. We know lots of people who have kids on the spectrum and they have become virtual shut-ins. They never get out, they don't think they can go out to dinner, they don't think they can go anywhere. We believe, the more you get out, the more you take your kids out and let them experience things, the better they'll be able to cope with life. We just want to share the tips and tricks that we've figured out along the way and just share our experiences going to new places, such as the Autism on the Seas cruise.

AotS:     Okay. Tell us a little bit about how that all played out. How did you decide on an AotS cruise for your first time?

CM:        Well, first off, we live close to Galveston, which is the port we departed from. A couple of years ago, we participated in an Autism on the Seas ship tour, which is designed for families like us who have never cruised with their special needs child before. We were able to go on board, meet some of the volunteers that were available at that time. We just got a good feel for how things were handled, got to meet people, and realized, hey, this is something we can do!

So, we finally got together and thought, "Okay, let's just go ahead and do this." We booked the cruise, and when we did that, we started researching heavily into what we would need to bring, and so forth. One thing we always do before any trip is just start watching YouTube videos on everything. We're big fans of YouTube, obviously.

We made sure to watch it with both of our boys so they could see what the ship looks like. There are lots of virtual ship tours, so we searched specifically for Royal Caribbean’s Vision of the Seas, which was the ship we were sailing on. We just watched those videos repeatedly for a long while. Then, around that time, we decided, you know what, it would be nice to have videos of our experience on an Autism on the Seas cruise. So we thought, "Okay, let's just do it." We'd been toying with the idea of developing a vlog, and the cruise was the perfect opportunity to get us started.

AotS:     How was Joseph's experience? How did he interact with the staff?

CM:        Everything was excellent. The only issues were fairly typical with Joseph needing to adjust to sleeping in a new place. The first few nights he settled down and got to bed a little later than usual. But the staff was excellent. Fortunately, the way it's structured is, you meet the staff a couple of times before you drop off for respite,  so Joseph got to know a few of the volunteers at the sail-away party. They also do a private one-on-one meeting, so we were able to get to know each other and he was able to get comfortable. It was a very smooth experience all across the board.

AotS:     Did you take full advantage of the respite?

CM:        Every time it was available, we took good advantage of it. We know that it's a rare thing to come by in the autism community. There were lots of shows and activities on the ship. There are always at least 10 things to do on a cruise. In fact,  we did a wrap-up and we were discussing that maybe next time we do a cruise we might want to schedule some naps, because there's just so much stuff to do that you can just go, go, go, go.

AotS:     It’s great that you could enjoy being carefree for a little bit and reconnect with your wife and your younger typical son, Carson, yes?

CM:        Yes. Oh, Carson enjoyed respite, too. He went in with his brother to the respite times more often than not. There were a couple of instances where we took him to a show that Joseph wouldn't find interesting, but he loved it. He was actually asking, "Hey, when's respite?" and one of the occasions was at a beach. You can't beat that?!

AotS:     How did Joseph do with the scheduled private activities for AotS cruisers?

CM:        Joseph actually got up a few inches on the rock climbing wall, but they certainly didn't pressure him. He got the straps on and so forth, the protective gear, and he would just kind of walk up to the wall, look at it, and get his feet on the first one, and then back off and then look at it. That was a good experience, because since they had a dedicated time for just us families, he was able to do it at his pace. There weren’t people breathing down our necks like, "Come on, hurry up."

Oh, and swimming. He loves swimming, so that was great to have that available. We did that every sea day. They had a swimming time planned with staff. It was nice, because normally my wife or I have to be with him 24/7, and so the staff was able to swim around with him, as well. That took some of the pressure off. He loves swimming, so that was something he really enjoyed.

AotS:     Before we let you go, give us a few of your tips. If you were going to advise a fellow traveler and parent in your situation, how would you tell them to prepare?

CM:        I would say you know your kid better than anyone. One thing, when you're in the autism world, you become an expert on your own child. So make sure that you have the items that they need to calm down and such, because when we would have some downtime in the room, he would go to his iPad or we would bring dot to dot books, because he likes crafts and activities and coloring. There were times that we would bring some of his own items to the respite and drop those off with him, just in case he didn't like the activities there. That way, they had a backup if something was wrong. That helps.

We brought some items just to make the cruise room a little bit more like home, like certain things from the bathroom and certain stuffed animals and things like that, just to help ease the transition. That helped, too. Just be prepared, essentially. Make sure you have backup batteries for iPads!

The other thing we did in preparation for the cruise was to create something of a social story by using those Youtube videos. It certainly helped Joseph to see the ship, see what the rooms looked like, etc. I do recommend that people start as early as possible. I see people in the typical world do things, like surprise vacations, where it’s like, "Hey, we're going to Disney World!" For kids on the spectrum, that's not something you want to do. You want to, the second you know that you're going, start working the thought into everyday conversation.

AotS:     So, are you going to cruise with us again?

CM:        Yes, definitely. We're going on an AotS cruise to Key West and CocoCay next summer. 

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1461 Hits

Kim Poppins talks about her cruise adventure with her special needs teen

Kim and Andrew Poppins

Autism on the Seas – On “Special” Vacation with Kim and Andrew Poppins

Autism on the Seas recently caught up with Kim Poppins, a single mom of a handsome teenage son with autism. After a stressful divorce, Kim needed a break to find some space, have some fun – and not feel isolated. She found the Autism on the Seas Facebook Page and quickly connected with other families. After listening to others’ experiences and sharing her vacation dreams, Kim decided to take the plunge with her 16-year-old son, Andrew, and joined AotS and staff on a 7-night Royal Caribbean cruise last February. Watch our podcast and read the Q&A below to hear her story to learn about the positive effects this trip imparted on her and Andrew.

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1622 Hits