Not An Island Podcast
Not An Island Podcast
Ep 3. Tackling Autism Misunderstandings
Ever found yourself in an awkward public situation with your child being misunderstood? Join Todd and Amanda Johnson, as they share their experiences with misunderstandings. It's not easy, but in this episode they discuss a silver-lining in each of these encounters and have learned to navigate them with grace. This episode takes you through the journey of understanding autism better, responding to needs, and some strategies to employ to combat these challenging situations.
In this journey, they share the importance of knowing your child's limits, being a faithful parent, and how to communicate effectively about autism to others who may not understand. As Todd and Amanda lay bare their challenges, they also provide practical ways of spreading love, acceptance, and hope within the autism community. From ground-level advocacy to spreading a message of faith, their candid discussion aims to comfort, inspire and empower others facing similar experiences.
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Hello and welcome to Not An Island podcast, the podcast series where we talk about faith, family and all things autism. So we are your hosts, I'm Todd, I'm Amanda, we are the Johnsons, and in today's episode, we're going to be discussing something. It's a little heavy, but it is necessary, because it's something that a lot of families with who are affected by autism go through and face every day, and so we found a few ways to mitigate some of the hardships involved around this, and that topic is this it is social interactions specifically being misunderstood. If you are a family that is affected by autism, you know that this is something, that it's hard and we get it.
Speaker 2:We deal with it as well.
Speaker 1:We've been through some duties, so yeah, we're not going to name any names. No Right, no names. Nothing crazy like that. We're not going to get into the nitty gritty, but, yeah, being misunderstood. So first we're going to talk about being misunderstood in public, amanda.
Speaker 2:Oh boy, what do you have to say about that? And just in general, or do you have any specific ideas?
Speaker 1:In general. We'll just start with general.
Speaker 2:I'm trying to see what comes to my mind. Being misunderstood in public in general does not bother me. Actually I had one recently I guess I could share. Recently we were out of town and we were in a bigger city, I'll just say that, and I had the kids out at lunch and this specific lunch spot has a play place and that's why we were there to get energy out and get lunch. Thanks, ezra was doing great, everybody was happy eating lunch and a family with a little girl came and sat right next to us and the way that the booths were, they were like back to back and so pretty much if you turn your head you're in like somebody else's back of their head. That makes sense. There's no like partition separation space.
Speaker 1:You can headbutt so much.
Speaker 2:Yeah, and so Ezra was sitting across from me, closest to where the little girl in the family sat down. It was the mom and the little girl who sat on the side. Uh, the Ezra was on and we were eating and I was tending to his brother, feeding his brother, and I look up and Ezra is really, really close to the little girl's face, which is something he does and it's hard and we're trying to teach him, you know, not to do that. Obviously he's innocent in what he's doing and he he's trying his best to interact and socialize, but that makes other people very uncomfortable. So we're trying our best to, you know, get him to understand like, don't get so close, you make them feel uncomfortable. Anyways, the mom was like not having it and I also don't know what.
Speaker 2:I don't know exactly what Ezra said, but Ezra has a tendency to say, whatever color somebody is, because he loves colors, and that's can be super awkward, and especially when it's a doctor or whoever you know, and he's saying bye, bye, brown doctor, and you're like no, why do you do this? Like I don't understand what he. He it's super innocent in his mind. Uh, he does not see race. I don't even know how we got into that part, but it's. It's something that's socially awkward, that happens a lot to us. Um, then we have members of our family who are mixed race and everything.
Speaker 2:Like he's grown up, uh, around other people and so it just, it doesn't really, it doesn't really make any sense, but he does that, and so I don't know if that's what he said. I don't, I don't know who knows?
Speaker 2:um, it was a little Hispanic girl that was on the other end. That's why I was like I don't know if he's saying she has brown hair or she. You know, he, he just goes to the list brown eyes and oh, she's brown or she's 10. I don't know what he said, but he was really close to her face and the mom turned to him and she was not happy. Obviously she doesn't know who this child is.
Speaker 2:Uh, she doesn't know he has autism and he's right in her daughter's face saying something that could or could not be socially appropriate, I don't know. And uh, she just whips around and she says excuse me, and and she like her whole head bob and everything, and I was like, oh no. And so I quickly tell her he's like I am so sorry, I said I wasn't paying attention and I said he's, he has autism and he gets really close, he gets way too close and something we're working on, and she really quickly changed, I would say, her tune and realized oh, my goodness, you know he doesn't mean any harm, but it it's very, it's hard, because if I had a daughter, who you know, and I didn't have any children on the spectrum, I probably wouldn't know either, and I may have a response of like to protect my, my daughter, and so not any like it's. It doesn't bother me per se, but it's. It's hard to see his innocence in something that he doesn't know any better. You know it's hard to see him be misunderstood misunderstood or even judged for yeah something that he does out of a place of innocence right
Speaker 2:it's ultimately it and and we've had issues in in other settings with him getting too close to people's races, not only that, I mean, there are times where he wants a toy.
Speaker 1:Okay, just imagine this in your head we're in line at a big, big box store and we're leaving. Well, we're leaving and we have the cart and he realizes we didn't get that special toy, um, and then he loses it oh yeah throwing himself on the ground. Here is a grown man picking up a six-year-old boy who's screaming and finally and throwing himself like.
Speaker 2:Like he's getting a lot bigger, so it's getting a lot more.
Speaker 1:Yeah, I mean, if I was an innocent bystander I would see that be like oh, that dude's trying to duck that child, or or he's yeah you know, you don't know what's happening fear in fear of his life. Truth is that's just how bad. This kid wants that toy. But We've ran into those situations being misunderstood in public. I guess what we're getting at is that being misunderstood in public is a very common, very normal and very Hard thing to deal with yeah. But he has been misunderstood by others. We have been misunderstood by others.
Speaker 2:I yeah.
Speaker 1:Not getting into that, but we we have. We've been misunderstood by others many times in public and just because they don't understand what we're all through.
Speaker 2:He is not gonna share the specific story because it's it was just really devastating, heart-breaking, but to have someone whip their phone out and start to video because they don't understand what's happening?
Speaker 1:That's.
Speaker 2:I mean it was, it was a little embarrassing.
Speaker 1:Even past that, though, what? What I think is the most important thing is that sometimes listen up, parent you can misunderstand your child. Mm-hmm, we misunderstand Ezra, yeah, all the time, and there have been times where I have misunderstood him and maybe taking something away from him because I Don't know, I don't know, I don't know how to explain it, but there have been times where Misunderstanding him led to a negative result.
Speaker 1:I'll just say yeah, um led to a negative result. Maybe. Maybe it ends up with him having a complete meltdown because and all he wanted to do was play, or all he wanted to do was have this specific toy and you know.
Speaker 2:I think, to a certain degree, us misunderstanding him is getting better, because he is able to verbalize, or. So now than ever. Usually what he wants, but it does still happen.
Speaker 1:Yeah, and so we we we're gonna stop here with that and say this, something that has helped us in a lot of ways. We tell him as, or use your words. Use your words like, if he wants something, we want him to be able to tell us, because it's so much easier for him to just tell us. Then it is for him to throw himself on the ground and then we get impatient with him and it turns into a grumpy situation and then we leave the store and then he didn't get the thing he wanted or we didn't even get what we came there for. It's just, it's a rough situation, but it can all be avoided if you can help your child, and that's where Learning their language, yeah, and preparing them.
Speaker 2:Preparing them before you go into a store. Something that I've learned with Ezra is if I say, okay, I want you to like, for instance, I'll give an example the last time we went into Walmart, uh, there was no toys. We weren't buying toys. But I said you can pick out whatever character fruit snack he want for your lunchbox. So he knew going in he was gonna get something that he wanted.
Speaker 1:She still tried.
Speaker 2:He still tried, but it helped navigate the meltdown because we had already established the boundaries. We'd already said look, this is what we're gonna do and him knowing things ahead of time. Someone told me this before and I, before he could speak, one of his therapists told me Because he, every time we would get in the car at this particular moment in time he would have a full-on meltdown. Getting into the car seat he was just absolutely Losing it and I I didn't know why and it was so stressful and he was a lot younger. And she said sit him down, put his shoes on and say tell him what you're about to do now, like thinking back on it. He probably wanted a little toy from inside to take with him and he couldn't verbalize that because he does.
Speaker 2:He takes things everywhere like that's just. But if he had that warning, because I'm thinking this child can't understand anything, I'm saying you know he can't speak because it didn't seem like he could understand anything that I said, so I thought that's so silly, like I don't see how that's gonna work, but then just preparing them. Sometimes we have to prepare Ezra days ahead for bigger trips or bigger things and we begin to start.
Speaker 2:You know, start a countdown mark, calendar and repeatedly yeah, because it's hard for him to understand time and, like you know, two weeks he can't admit. I don't think any kid can really. You know, time back then moved so slow yeah it's been three years. Yeah.
Speaker 1:But, yeah, being being understood by your parents, or also you understanding your child, is probably the biggest thing that you can do and listen. We've been guilty of getting impatient with our child when all he wanted was the one thing he couldn't describe. So really really have some grace and some patience there with your child.
Speaker 2:With him and with yourself, because With yourself, yeah, you're not gonna get them all right.
Speaker 1:You're just not it's part of being a parent, and so we're gonna move on to point number two, which is being misunderstood in private, specifically, we can talk about as it's like family settings, so it's not really private, but it-. Similar. We can say like family get together, things like that. We're not gonna get into specific situations, but there can be times where people around you who we said in the last episode you would think Would understand.
Speaker 1:Just don't. But you have to understand. And what we've had to learn to understand is that's okay, you wanna meet them where they're at, some people who are just downright not accepting, and that's who. That's their prerogative. But at the end of the day you will find nine times out of 10. If someone is mislabeling your child or mislabeling the situation, or even mislabeling you or your parenting skills, nine times out of 10, they literally just they've never been there before. They don't understand it.
Speaker 2:I said this, I think, in the first episode, but like and I totally believe it, If you're going through situations with family members who are misunderstanding or just giving you advice out of a place where you know they don't understand the situation cause they're not in it daily, you know your child best, you know their needs, you know what they need and you know take advice if it pertains to you, but take a lot of it with a grain of salt. You know what's best. I just I would say that because it's been a process for our families to learn Ezra and to learn what autism even is. None of no one in our family had ever been affected by autism before. They were clueless, just as we were. You know we had a front row seat and they kind of had, you know, five rows back, and so they may think they know best on certain things and they just don't because they haven't been there.
Speaker 2:And have grace with them as well, because that's been harder for us to do. So have grace with you know this, understanding families. But yeah, We've had moments in those settings where, especially when Ezra was younger, even before the diagnosis or fresh diagnosis, where it looks a lot of the things that children with autism display look behavioral and it was confused for that. A lot of times it's like, oh, he's just acting out, he's throwing a fit, he's having a tantrum and it's like yeah, there's a big difference between a fit and a meltdown.
Speaker 2:And you know if you have a child with sensory aversions. It's like his tag is bothering him, those lights are bothering him, the sound in this room, it's a conglomerate of things and that child may not have the ability to express that To vocalize any of that.
Speaker 1:Could you imagine, like not being able to say what's on your mind, literally being able to say it, being trapped in your own body?
Speaker 2:to that extent anyway, I had a friend who's a closer in her mind her little girl. When she was little, every single store they went into she just went ballistic I mean absolutely would scream her head off, could not contain herself. They'd have to take her out to the car. And when she got old enough to be able to express what it was, the lights in the stores were actually making a sound and it was deafening to her, it was ear piercing to her. You know, nobody else could hear it, but she could.
Speaker 2:And we have to realize like and your family members have to educate themselves. I'll say this if they want to be involved in your child's life, they may not want to take this stance, and that's okay. You may have to take a few steps back. I'll just say it that way. But they have to educate themselves on what autism is. If they, all they gotta do is do a slight Google search and they might find something they never knew. If they're, the more knowledge they have, the more they know about the sensory processing, the more they know about autism, the better they can help you, advocate and support you. And hopefully, if you say, hey, do some research, get them a book, something that they will, they'll say you know what I want to be involved in my you know cousin, grand kid and uncle whatever they are to them's life, to the point that I'm willing to learn about this, I'm willing to help.
Speaker 1:Especially for us, like we live in the South, the South, and we have some very sale turned.
Speaker 2:Yeah, views and values.
Speaker 1:Family and there's. You know, sometimes you I know a lot of you out there have heard well, if you leave that child of me for a week, you know that problem won't be there anymore.
Speaker 2:It's like good good luck yeah yeah.
Speaker 1:If you're the problem, you won't be there anymore. Good luck, my child will still be hanging around, but you'll be gone because you'll have ran off, you know. But at the end of the day, like she said, no one understands your child like you do. And listen if you are a couple, if you are a couple who's raising a child, listen to your partner, listen to whoever they are. A lot of times there have been situations where Amanda has known what he needed and I've been so adamant that that's not true. Or, you know, maybe he wanted something else, blah, blah, blah. But she knew and she got it right, and vice versa. There are times I know. So really lean on each other, but being misunderstood by family is a very real thing.
Speaker 2:Oh, my goodness, and you're. You know, I know this is the hashtag of our podcast, but you're really not alone. Like, other people are going through the same thing and honestly, there's some of them if you follow any of the mom pages and whatever for autism. They're going through a lot worse than we've ever dreamed of. So, yeah, just know you're not alone.
Speaker 1:So we talked a little bit about being misunderstood Now and we've covered a little bit about some ways to avoid or ways to mitigate situations. But yeah, we're going to talk about ways that we have found in specific to help these situations. Number one, I would say, is to know your child and know their limits. What do you think?
Speaker 2:Yeah, I mean it's easier said than done because sometimes you think that it's gonna go much worse than it does and sometimes it goes better than you kind of dreamed in and you think it's gonna go the worst. So it's hard to know fully. But yeah, I mean, if you see the kind of warning signs of ooh, we're in, it's not a good day, you know, take that into consideration before you take them into. And I'm giving that advice and we've done it plenty of times. We've ignored the red flags and we've paid for it, you know.
Speaker 1:We've ignored the red flags and done the six flags and cried about it in the aftermath.
Speaker 2:He says six flags, it's just mainly big events. We've never been the six flags Exaggerating.
Speaker 1:But another thing I would say that I learned from a friend who is an adult, who has autism. You know, when I was going around to family or friends houses and we would have Ezra with us. I'm sorry, I'm sorry, you know about however he's acting.
Speaker 1:And how loud he's being, or how loud he's being, or throwing a toy that no one cares about, like whatever you know. And I'm sorry, my friend pulled me aside. He said Todd. He said you know I love you. I was like yeah, and he said I'm gonna tell you this from Ezra's perspective Stop apologizing for him.
Speaker 1:It hit me like a ton of bricks and at first I was offended Cause I was like my kid's not acting like all the other kids. It's just my way of explaining but, truth be told, he's just being him. It's one thing to okay, buddy, let's not do that and pick it up or correct the situation even, but it's another thing to apologize for him, because if there's one thing listen, this is a faith podcast. If there's one thing your child needs to know, it's that you are a faithful parent, because it shows them how faithful God is through their example, their earthly example. If you are the same at home, as you are at your friends' houses, as you are, as you are at family get-togethers and as you are in the grocery store, unapologetically loving your child and unapologetically defending their stance and really defending their disability, they're going to know that you are solid as a rock and that was a big one. Always, always be ready to just be solid and not worry about apologizing.
Speaker 2:Yeah, yeah, and I think what Todd's trying to say too is like there's no shame or embarrassment that Ezra is bringing us, and I think sometimes, when we're constantly apologizing for the behavior, that's what's coming off. It's like, oh, I'm like I'm ashamed or I'm embarrassed that he's acting the way he is.
Speaker 1:Which isn't true at all.
Speaker 2:You know a lot of the things that Ezra does not all but a lot of things Ezra does are outside of his control. You know, and there are some things that we know, and we know the difference and we've had to learn and sometimes we still get that wrong, but it's trial and error and you learn. You know when there needs to be disciplinary action and when it's really just like I'm really overwhelmed that I'm out of control of my body With that being said, sometimes we can be out of control.
Speaker 1:Sometimes we realize we've lost control of the situation. So, on that topic, I want to bring up the last thing that I would say we're going to talk about in this specific topic, and that is always have a plan, always have an exit strategy. If you know your child loves an iPad, hey, keep that iPad from them and let them. Let them socialize, let them have fun, but if things get too rough, don't be afraid to set them down.
Speaker 1:And you know, just distract them, or there are ways, or have an exit strategy. Hey, there's a solid, there's a solid line here in the sand. If this, if my child starts displaying these attributes, or if my child starts to have a hard day and it shows this way, well then we're leaving.
Speaker 2:I don't care how much money we paid for the tickets to the zoo, or whose feelings we hurt because a lot of time oh just stay, just stay one more hour, it'll be fine.
Speaker 1:It's not worth your sanity.
Speaker 2:You know you have to put your child's needs and their stability ahead of the emotions of other people around you who who obviously they want you around and they love you. That's the reason they're saying those things oh, stay another hour. But you know what's best Anytime that we've been, we've been to that stay another 45 minutes or it's never ended well. So, yeah, have that strategy and exit plan and and stick to it and stick to your guns. And it's okay if you hurt a family or friends feelings. If they love you, they're going to come to terms and understand.
Speaker 1:Like this is just a hard situation, but yeah, yeah, so today's episode we talked about the heavy topic of being misunderstood both in public and in private. We talked about some different ways to help those situations. Maybe mitigate some circumstances.
Speaker 1:But, as always, maybe you have some things that you feel like we should cover, maybe there's some, some strategies we don't know that you do, and if that is you, or if you just want to talk to us, holler at us, reach out to us at an email, at not an island podcast at gmailcom that is the title of our podcast at gmailcom.
Speaker 1:Also, listen, if, if this episode is touched you, or if you have been impacted in any way by the stuff that we're sharing, by our content, please, please, please, share it. Please share it with your friends on social media or or word of mouth. Every little bit helps, because we know that there's some family out there that needs this type of interaction and that that they feel like they are an island. If, if, if, if you know that family, please send them this information, because that's the whole goal and purpose behind this that you are not an island. Also, please like, subscribe, rate, follow, share. Whatever this podcast, anywhere you get it, whether that's iTunes, spotify or wherever you listen to your podcasts, just show us some love. That helps, that helps the message get out. That helps the message of hope, acceptance, encouragement and love and faith get out there. So, as always, we are Todd and Amanda Johnson.
