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How to Keep Your Child From Drifting Away at Theme Parks, (and other autism hacks for outings)

In our 13th episode of Connect with Success, a podcast built around The S.U.C.C.E.S.S. Approach (sm), and the person who coined it, Dr. Lynette Scotese-Wojtila, we go into a new phase! We've spent the last 12 episodes digesting and understanding the pieces of The S.U.C.C.E.S.S. Approach (sm) and how they work so beautifully together. And now we're going to be shifting things just a little to talk more about how to apply The S.U.C.C.E.S.S. Approach (sm) to given situations. We will also welcome parents, teachers and guests who will share their Stories of SUCCESS with us! We call these people "S.U.C.C.E.S.S. Approach (sm) Champions" because they have been making a difference outside the center and making it work every day. So in Episode 203, we're talking about the different ways using The S.U.C.C.E.S.S. Approach (sm) can be applied when you're out and about in the regular world with your loved one that has autism. Dr. Lynette, what's our concept for this episode? LYNETTE: Well, we thought it'd be helpful to our audience if we started talking about what we're calling “autism hacks for successful outings” because one of the most challenging things that parents face is what to do in the moment they need to do it. The answer, in a global way, is always be prepared, be proactive. So “what does that look like?” is today's topic. RICH:

Sometimes it can be hard as a parent to prepare yourself for every possible thing that can potentially cause a sensory need to be tripped. I've been there many times myself, I and in a previous episode, I talked about taking our daughter to a birthday party and not being prepared for the fact that all the video games, and the lights flashing, and the noises, and the echo -- how all of that could be triggering for her. And we were really starting to work on some calming strategies for her, so I remember having some footage early on of trying to implement some of the techniques [turtle her], but we had to actually put her in her car seat in order for really to feel that compression and that security. We will talk about some of the things that we can do to help our loved ones with autism, to prepare them for what they might encounter in the world; and it is so hard to do everything. But, you know, I thought we would start to share a couple of stories today. What do you think about that?

LYNETTE: I think it's a great idea and maybe now's a good time to kind of talk about the word “hack.” We think of a hack as a trick or something that you have to reveal or come upon that is crafty or magical. And I just want to say nothing that we're going to say today is magical. It's all based on our understanding of the neuroscience behind autism, and how individuals with autism think and perceive, which is what we're going to be speaking to today in these “life hacks” specific to outings and things like amusement parks or things like hospital visit, for example. RICH:

And you say over and over again, that first “S” in SUCCESS is “Strategic.” Planning for what we can to help them out. And so I think a lot of this is very strategic. So the first thing I'm going to talk about is my vacation this past summer, we decided to rent a house and we spent two weeks and we enjoyed one of our favorite places on earth, the happiest place on Earth, which is Disney. And we had a different experience the last time we were there with our son, who was on the spectrum and going through The S.U.C.C.E.S.S. Approach (sm) and Integrations Treatment Center. And he's just a delight, but he really struggles with the waiting in line. Not because he's impatient, but sometimes some of these attractions that you hit and some of these places have a lot of theming, or it's dark, or they have noises trying to get you in the mood for the theme of that ride that can be very triggering for those on the spectrum. So I was very happy to see Disney has what they call this DS Pass -- this disability services pass -- or assistance services pass -- and they were able to make some accommodations for those people who were on the spectrum.

So you can go to Disney, register your loved one, and you go to the Fastpass line. I think it is called the Lightning Lane now and you tell them we'd like to do this attraction and they say, “No problem.” You get the DS Pass and they tell you to come back in a half an hour and then you can kind of cut through the line so that you're still waiting, but you can wait on your time and it doesn't have to be something that's forced on your child or loved one. Universal had the same thing. You can go in there, parents swap out so that you can have someone go and cut through the line and wait for them. It was a great experience and it made the difference for Finn to a point where he actually thought that he could try to wait in line for some of these rides. It was interesting, the patience that is required. We talked about this before, but preparing him for walking that much (because there is so much more walking that you're used to). As a teacher, I gave myself between 8000 10,000 steps a day. And then I timed my steps at Disney and it's almost double that in one day. You know so it's a lot for someone who is on the spectrum, and for a regular person walking around taking that many steps, for someone on the spectrum it can be somewhat of a chore too. Now the other thing I thought was really kind of cool at Disney was the sensory area at Epcot. And I can't wait for them to do this in other parks, but they actually have a little piece of land set aside where you can go on some spongy ground and there are some spinning things they can accomplish. There are tasks they can do manually with their hands, slide down, they can swing -- you know all kinds of things to help them become a little more “vestibularly” ready for the things they're going to be hitting at the park. LYNETTE:

I like the idea of the disabilities pass that allows folks to experience less demand. So that is a compensatory technique, where we are compensating for a child with special needs or an adult with special needs’ inability to wait. We are compensating for that by lessening the time that they have to do that. And so that is helpful, but it's not necessarily helping them move through their issue of “wait.” So it's not a treatment option. It's an environmental modification or compensatory tactics. So I just want to point that out while we're at it. Something like the sensory park or the sensory area of the park. There are provisions there that places like Disney are providing to dose the nervous system or feed the nervous system with things that are calming. So that is more of an approach of filling your cup so that you have more to spend so to speak or filling your gas tank so you have more to spend. So that's a fueling kind of technique. And that's very positive as well and can help. So parents need to take advantage of some of those things that are there that are kind of common sense. They're part of the park; take advantage of it. I am thrilled that the community is more aware. But I want parents to have even more tools. And so we're going to talk about some things that we did actually for your little guy in response to him being sort of a wanderer as you say. So let's talk about that if you can. RICH: Yeah, so the first time we went to Universal, Finn was probably about five or six maybe, Christy [Rich’s wife] would probably know the exact age, but he was a younger guy, and so we were waiting outside. We were parking some of the strollers that we had, and Finn was notorious for drifting, and so he would turn around and all of a sudden he's just not there. Well here he was there the whole time. But he just kind of drifted over to this building because he saw his name on the sign. And it was “Fin” and something's -- it was an eatery of some sort -- but he saw his name on the sign. So he kind of drifted that way. It scared the living daylights out of us! So, yes, we were really concerned because this drifting thing is something we've always seen in Finn because he sees things that are of interest to him, and instead of actually talking to us about what he's seeing, we've gotten very good about asking, you know, what he's seeing and what you know what he's thinking at this time, but again, he will still kind of drift. So there was another time at Disney where you just kind of got wrapped up in the aquarium area of the NEMO ride where he was with us, and then all sudden he wasn't. And there we go again. So Lynette you had some amazing way of focusing Finn this time for us for this trip that really helped out. Do you want to talk a little bit about that? LYNETTE:

Yeah, I think it's a powerful outcome that we experienced together. And it was together. Boy, do we have to work on that right! What we ended up doing was going to the root of the problem. So let's talk about that. With respect to Finn, his challenge was to suppress everything else going on around him, like the light flashing with his name on it, so to speak, or the restaurant, you know, marquee that called his attention visually. Like the other thing is in the park that may have been a distraction, he had to filter that out, too. In fact, pay attention to what was supposed to be salient. So to help Finn know what was salient, which means figural or should be important; we had to go out of our way to identify what should be important. And so we had to manipulate the problem which was his attention and his response to what he was seeing, which was to move his feet towards it.

So the idea of feet came to me because his [feet] were going in a direction they shouldn't, and yours were left separate from his and so I knew if I was Finn, I'd have to shift my attention, but wouldn't know what to look for instead of the signs or the environment. So in the long and short of it, we basically helped him think about his feet in relation to his parents. That took a lot of proactive planning, so it kind of went like this:

I had the idea of helping him concentrate on feet. Because by concentrating on where his feet were in relation to his parents, he could manipulate the distance such that he was safe.

That required making the feet salient. You can't just say those words sometimes to a kid with autism. So instead you have to show them, so I had Dr. Rich and his wife take pictures of their feet and Finn’s feet. And so Rich did all this behind-the-scenes work and took this pictures for us. I think maybe I took the one or someone took the one of him at the center. I manipulated the photograph so that it was just kind of like from the knee down. And I prepared these little “cards” that were going to be part of this game that we were building up to. And on the back of those images of feet, mom's feet, dad's feet, Finn’s feet, was the whole body of the person from which I took the feet picture. So I had all that prepared, and then I put together (before he came for that session), all of their feet on a large piece of paper, a regular sized piece of paper 81/2 by 11 and I laminated it so he could have his feet sheet with him to talk about it on the 12 hour drive down there. Oh boy that's another thing we can engineer supports for a long ride right? Yeah that’s another episode, but so he could think about this talk about this. Look at this. Get used to looking at this and train himself to think “feet.” Not only, it's not like he was walking down, you know, looking at his feet for four hours a day walking around the park. He was looking around, and I'm sure engaging and doing what he needed to do, but it was salient for him to be pulled back to safety by knowing to home to the feet. So we made up a game. And all of it is recorded. We're going to be sharing with you through the magic of audio. Yeah, sound bites. What that sounded like. Absolutely. Let's listen to that clip right now. Okay. Okay, ready? [SOUND BITE of Lynette and Finn]

RICH: So, I think what really struck me too was he was even in the pictures, you saw him starting to drift, like there were backgrounds, he was trying to figure out where those pictures were taken and what they were standing, and not so much the…you were trying to pull him back in. LYNETTE: Right, and as we would expect for a child with autism who oftentimes has super skills at seeing details, missing maybe sometimes the forest for the trees in those details, I noticed that he was paying attention to what was the background, and where it might have been taken, and why was it there… And, I said, you're thinking about the background. I want you to think about feet. I kept bringing him back and that was strategic because the whole lesson (and I only had a short time before they were going to get in that car and travel down there) was to impress upon him the importance of homing to the feet. So, every millisecond I had, had just surrounded that topic and it was successful. I think what was so interesting is I think if we took a picture of our feet and showed it to ourselves a week later, we would know that those are our feet. He didn't recognize mom's feet or dad's feet. He did kind of recognize his a little bit because at one point he says as you heard, “I’d know those shoes anywhere.” So you know there's that's okay that that wasn't an instantaneous recognition. That wasn't the point, but it's just something that we noticed about his processing style. RICH: But it raised the awareness of his feet and the fact that we have feet. Yes, you know, and what and I thought what was very strategic was you said make sure you bring and wear the shoes and the pictures that you're wearing on vacation. LYNETTE: That's right, because the whole activity was designed to increase his automaticity if you will, of falling in line with safety measures like homing to his parents, proximity wise. And so if there was one dimension off -- like different shoes or no shoes, or just socks or something like that, it would have been a little bit less exact. And so we wanted every opportunity to make it exactly a match because there is no do over if, God forbid something happens where your child is missing and can't be found that you know, we want everything to work in the favor. So all measures -- extreme measures -- when it comes to safety and health. RICH: For sure. And I will tell you that we had zero problems this time so the feet sheet did come with us on vacation. It was actually brought out in the car and he was talking about it and he was actually my nephew came with us on this trip. This is a graduation present and he was telling him all about Finn’s feet sheet. But the fact that he was not, so I mean, but it was kind of cool because they raised the level of awareness because it was it was an addition to our family. Of course it still family, but I mean it was in addition to our family coming on the trip, and that kind of created this nuance for him to have trying to you know, here's my feet sheet and explaining it to him so that and it really worked like a charm. So thank you for that. LYNETTE: Sure. I think if we remember some of our past episodes, there was this notion we raised not long ago about helping a child with autism to know what to do versus what not to do. And this is an outstanding example of that principle. So a lot of times we say things like, don't walk away, don't get distracted, don't wander, don't leave me. A lot of negation. Don't, don't, don't, don't! What else are they to do if we don't tell them what else to do? Right. So this in this example, this follows those principles of here's what you do DO -- you DO look for feet. You do make sure your feet are close to your family's feet. It puts the emphasis on action, versus negation. RICH: Absolutely. And there's another beautiful story I'd like for you to share on a patient that you helped prepare for bloodwork. It's not all vacations when we're out in the world. LYNETTE: That's right. Boy do we wish it could be but sometimes kids need medical attention. And, you know, occupational therapists like me, especially those that specialize in autism, really understand that that's a taxing experience on everybody: the child, the family, the hospital staff. So in a global kind of way, you know, it is. Autism doesn't turn off just because you're about to have a procedure. And so what we often do at ITC, at least I do, because I seem to be welcomed by the medical community to do so, is accompany the child to the procedure. I can think of times when I've gone into the OR [operating room] and helped the anesthesiologist to help the child get under; or met a child in post recovery or post surgery and helped him keep his leads on or his IV and that kind of thing. And parents so appreciate that. Even simple things like going to the dentist, you know, I do that quite a bit as well. Not so simple. I shouldn't minimize that; that can be traumatic. Because of COVID there was huge onslaught of problems with our kids when they had to stop coming to us right after Governor DeWine here in Ohio, announced that we had kind of close down and stay home, which was around March 17 or so last year of 2020. And so immediately our kids started falling apart because they need their supports. And one little kiddo who was about 10 at the time, so stressed out didn't understand, pre-verbal not able to understand what was happening and why he wasn't leaving the house. He would do things like put his coat on and go to the door or he put his sock on and then he put another sock on over that and another sock over that. Because these routines that meant to him: I'm ready to go, were all he had right? He never had the leaving experience. So they found him a couple houses down he loved it's just very, very stressed child. Well, he stopped eating. And so mom was of course keeping me apprised and I was engaged with her as much as I could be from a distance. And the doctor said that they really thought that he was dehydrated, that he might have to be hospitalized and they needed blood work. So of course we're like how do we get this kid to wear a mask? How do we get him to go into a hospital setting and get this this blood draw? So we worked with him on the mask, and I basically coach mom. He had some experience because mom was in the medical field. So we've seen masks, he started to wear masks and got himself kind of trained, which was great. Didn't like his nose covered but we would count you know let's hold on your nose. Let's do 10-9-8-7-6-5-4-3-2-1. Take a break and then cover again like these periods of practice, right? Conditioning I guess is a good word for that. But in order for him to get into the facility, I met mom in the parking lot. I put on my mask so he would see mine. We rekindled on the parking lot because I hadn't seen him in a long time, and we walked in, helping him to know we're going do something new. And when we got in, I used my hand over where the antecubital here at the elbow, which is where we would the blood drawn from. I was pushing on it touching it saying sometimes we touch and I was touching that part I pushed very hard because deep pressure touch. As we learned some sensory integration is organizing and kind of dampening. So I was doing two things. I was helping him know what part of his body was going to be involved and touched by a stranger. And I was dampening those dermatomes, those skin cells that pick up pressure by putting some heavy pressure on it with my own fingers, right and giving him the language “So time to touch, touch, touch touch,” kind of padding that part of his arm. And I did that for a number of minutes before he had to go in and I went in with them. The Lab tech, the phlebotomist, was able to have them sit comfortably in that little arm chair kind of thing that extends in the board and all they strap the board on him. And I kept saying, “Soon it’s time for touch, touch, touch, touch, touch, touch.” So my language, even though I wasn't right in front of him, I was behind the phlebotomist, my language and my tune was rising up over those bodies and that's those people who were silent while I was coaching him from behind them. And he did it. I mean, the whole thing was beautiful. It was done in about 30 seconds. You know, I think towards the end I said we can count we will be done in 10 9-8-7... And he did it, so we got what we needed. And then he really put the icing on the cake and went into the bathroom and was able to give a urine sample. Awesome, which we didn't expect but you know, we worked together we captured it and we helped him now it's okay to go pee in this thing. You know this urinal or this cup? I think it was that allowed him to have his labs tested for your analysis as well. So that's what it looked like. RICH: I might have to bring you with me because I apparently have anxious veins and I've been pulling him out times like, they'll go to give me an IV and they're like, we can see them and they can see them on me and they go oh, but they're hiding now. Yeah, I don't know what happens to him. So they're their needle shy, apparently, I guess. Well, that's a beautiful story as well. And we also have some stories that came in from our Facebook page through our SUCCESSful Families page and the first one comes from Jennifer, who said: we've lowered our expectations for these places. We take frequent breaks, allow him to use his iPad and sit in a stroller with top up to decompress and use any available tools the facility might have to offer such as passes that will make waiting times less, use sensory break rooms, go during sensory friendly times with less people admitted etc. What a great strategy. LYNETTE: I get some of those compensatory, external, built into the facility kind of provisions. It's free, why not use it, and it's helpful, so maximizing the child's experience and minimizing family frustration. And I think families feel good. One of the things I hear the most when people come to ITC is “I feel like you understand me and therefore I belong here.” And if you feel like an agency or a facility or an amusement park understands you and your needs, then you're part of that community. You belong there. And then you embrace going, which is different than, “I can't go that's never going to be a match for me.” and shying away like our mom has said. RICH: Sometimes you have to deal with some of the bad I think, not bad in a horrible sense. I'm talking about, just, you don't know until you go sometimes how things are going to go but then that improves your knowledge of what you're going to expect next time so you can better prepare yourself in your in your loved one.

We have another story that was shared with us today from Russ, who says we always try to go to these types of places on off times to avoid crowds and overstimulation. He's recommend Sesame Place is the only amusement park that they have found that's accommodating so far, the staff is great. They have quiet rooms, low sensory areas, low sensory parades, and many other things. And if you haven't been he said it's very much worth checking out. So we'll put that link in the show note as well. But I should also say that on their website, it says that they are the first theme park in the world to be designated as certified autism centric. So I think that's great that we have parks that are really coming to understand that there are places that folks on the spectrum need to go. LYNETTE: Yes and I think that again highlights the compensatory nature that these entities are able to provide. What I want to always encourage parents out there to know that it's okay to compensate. That's often all you need to get through the episode of the experience, but there's a way to treat as well. And that takes the expertise of The SUCCESS Approach mentality. So an example, in the sample with Finn at Disney. He could be compensated for by the lightning track or the Fast Pass…

RICH: It used to be Fast Pass, now it's Lightning Lane. LYNETTE: Okay. So that's compensatory. But what we did through The SUCCESS Approach is give him a new skill. So if he is able to use that “homing to the feet skill” in order to measure safety or approximate safety to his family, that can transfer to other things. So anything you are wanting to do a haunted house and there's no Fast Pass, but Dad’s feet are there; and so he can, if he gets overwhelmed, home to the feet, so it's a skill that can transfer. Do you see the difference? Absolutely. RICH: And he is less drifty, you know, now which is awesome to see. I noticed this he would never say it out loud. But I noticed that he does, when we get somewhere, and he'll look at our feet Yes. And so he is starting to train himself to really understand that he needs to be with us and focus with us. LYNETTE: Beautiful, and so in the second example of our kiddo getting the blood draw, that wasn't necessarily compensatory, it was kind of like equated to Disney's having a sensory area to prepare them for the experience. So that “touch, touch, touch, touch, touch, touch” to that antecubital space, the elbow, the inner elbow where the blood dry happened, that was preparing him for the sensory load and the information processing load of what was going to happen to him. So the language supports the sensory supports. He didn't come away with any new skills, but what happened is his brain tolerated that experience, kind of registered it because who wouldn't? And we could say that he, from information processing theory, has a new and better schema for what to expect next time he goes. Just like Finn has generalized or internalized that new schema for being safe, and as evidenced by him starting to talk a little bit more about being close to you guys when he's at a place like a park. RICH: Absolutely. All right, well, we'll be right back with this episode's challenge.

[Music]

RICH: All right, Dr. Lynette, let's share with everyone the challenge for this episode. LYNETTE: I think the challenge is twofold. One is to know well, the limits and supports of the place you are going; and the second would be to confer with your team, largely the occupational therapist, but all parts of the team members to ask the question what kind of external or compensatory supports what might we need to endure well in this thing we're about to venture into; and what can we do to help the child actually learn a new skill and prepare for success in that environment? RICH: As we wrap up this first episode, it's been so refreshing to… I mean, talking about The SUCCESS Approach in general, it's just an amazing thing. Right? For instance, so many wonderful things for some great people. But just the fact that now we can start talking about applying it to our daily life. I was wondering if you could just kind of summarize some of the things from this episode you think we should take away? LYNETTE: I think if I had to come away with some takeaways for everybody it would be to think about the cost benefit analysis, I would say of going to places like this, you know, where some of our listeners and some of our folks on Facebook admittedly say that they avoid those things. You know, try not to automatically dismiss the opportunities for your kids. We want them to be integrated into the community. We want the community to get to know and love and appreciate all of them and their skill sets and their challenges. We all have them, so that don't be afraid of integrating into those communities, but do it wisely. RICH: Do your research. You know, don't be afraid to [go]. I know that there are many theaters -- Playhouse Square is one of them. They will have sensory friendly performances for those who might be on the spectrum but still loved the theater. LYNETTE: Yeah. And I have a great example that I'll tag on here. One of our little kiddos has a dad who's very theatrical, and he invited me to go to a play he was in, which was amazing because my nephew was also in this play coincidentally. And he had approached the director, it was a community theater, about accommodating his child. Who he knew was going to be in the audience the same day I was because I went on purpose to support him. And the provision he asked for was clicking his fingers at instead of applause. So snapping fingers was done instead of clapping or no clapping at all. And that really helped this little kiddo to be able to tolerate it, and they helped him be in the front row. Of course, I'm crying the whole time through and filming for this family and you know, getting that emotion of this child seeing his dad perform. I'll never forget the look on his face. And he actually tried to go up on stage to be with him. And so mom and I were there validating: “Yes, you see, Daddy, Daddy is busy. Let's Watch Daddy be busy from here.” And it worked. And you know, you didn't you know, try to get out of that after he knew that he was gonna see daddy after and that it was okay to walk daddy from where he was but he stood and danced. It was Joseph and the Amazing Technicolor Dreamcoat. And you know, how lively some of those those of you into musicals know the liveliness of some of those songs. And that child danced, I think for a whole 45 minutes, in the first act and then the second so those things can be very successful; and mom and dad rolled the dice and took a chance; put the supports in place between the director and myself being there, and this little kiddo had a great experience. RICH: We would love for you to connect with us. Leave us feedback, a story or a question you're thinking about through our Speakpipe page. You can leave us an audio recording and ask away. Who knows, you may even be featured on one of our episodes, you can reach us@www.speakpipe.com/connectwithsuccess and use your phone or computer to leave us a voice recording. We'll put the link in the show notes as well, but that's www.speakpipe.com forward slash connect with success. LYNETTE: We hope that you learned something today to help you on your journey with autism. We'll share more on our next connect with success podcast. Until then, expect success. RICH: The S.U.C.C.E.S.S. Approach (sm) is a registered service mark protected under intellectual property law. Unless otherwise specified, all music, audiovisual and proprietary content shared in this podcast is property of AWEtism Productions LLC and its sister agency Integrations Treatment Center. Use of this content is unlawful without the expressed written consent of aforementioned agency. For more information about The S.U.C.C.E.S.S. Approach (sm), Please go to our website at www.thesuccessapproach.org.

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