Ep. 14: Let's Talk About Speech

Parenting Severe Autism mom & podcast host Shannon Chamberlin shares an opportunity for listeners to ask an expert speech therapist "anything".  This episode includes some funny family speech experiences and tales of new and interesting behaviors involving Shannon's son and speech.

Transcript

Shannon Chamberlin  0:18  
Hello, and welcome to The Parenting Severe Autism podcast. I am your host, Shannon Chamberlin. I'm so happy that you're here with me today. 

Shannon Chamberlin  0:25  
You probably  remember, if you listened to my last episode that I was a little bit down in the dumps, and I have finally come out of that. But it did take me about three or four weeks, and I noticed an interesting thing about our son during that whole time. Now, right now, it's November 6, I'm recording this episode two days ahead of the full moon and the full moon fever has started, it started two days ago, in our house with our son, everything is just bonkers and very hard to deal with, very dangerous. You know, he's, he's very violent and angry and uncomfortable right now. Plus, we've had some storm systems coming through and a super wind storm going on. So it's been really weird around here, and I'm just hoping I can get through this recording without something major happening. He did go for a ride with his dad, so I thought, well, I'd better sit down and do it now. 

Shannon Chamberlin  1:24  
Now, I noticed something really interesting about our son during the time that I was having this sadness. And I've - one thing I've realized is that I think that I tend to get sad, right around October of every single year. And I've also been thinking about it, and I think that our son's behavior starts to decline quickly, right around the same time. And I don't know who starts first, but I've noticed that neither one of us are happy during October, and for me, it kind of goes all the way through until spring. I think that I'm just in the wrong area geographically, and I wonder if maybe that has something to do with our child. So any of you listening who have a home in a warm area, maybe Florida or Arizona, Hawaii, anything like that, I would like to know from you, if you and your child, or just your child experience this type of decline during the fall and winter months. I'm just curious if it's geographical or if it's just something to do with the sun and things like that. I know, it's weird, but I wonder about things like that. Now, I noticed last week when I was still pretty well down in the dumps. I think it's interesting that my son knows when I'm sad, even if I'm not just sobbing but I was having a hard time keeping it together for a little while there. But he seems to really improve during the times that I am down in the dumps. I don't know if it's because he thinks that perhaps he's the problem, or if he thinks that he knows what makes me happy coming from him, which is good behavior, good effort towards living his best life, you know, participation in life and things like that, or if he is just trying to figure out a way to iron everything out. Because I've noticed also if someone else in the family gets angry with him, which - this has happened several years ago - something happened with a family member trying to step in with his behaviors. It got really out of hand really fast. I'll tell you about it another time, of course. But the end result was that our son was - he was walking on eggshells, he was really on his P's and Q's and just trying really hard to be good, and you could just see it on him. And it was because this family member blew up. And he never expected that he's never experienced that before. And he was very uncomfortable and just trying to figure out a way to get back to the life that we always had, you know? So I wonder if it's that, but our son has been having conversations with me on purpose. And as you know, it's not that he has great speech or anything, but he did a long time ago. And then he lost those skills. And now they're slo -- They're coming back a little bit, here and there. But it seems that they're only coming back when he thinks that he needs to employ those skills in order to perhaps cheer me up or make me happy. And I just thought this was really interesting. He has been using... I guess you could say sentences. He actually did speak a full sentence the other day in the kitchen. And it was, I was in the kitchen as always, he thought I was still sad. I was holding it together. I was okay but he didn't know where I was emotionally and he told me in his own way in a weird high pitched voice that he wants to play Xbox and he has been detoxed from games and movies for a long time. So, periodically we'll allow him to play the Xbox and it's amazing, when we let him play the Xbox, he's interested in it for maybe up to 15 minutes, but it's not the autism and the lack of attention that stops him from playing anymore. It's just that he loses interest. He had been detoxed from it where he seemed to need it to survive before. And now he's just like, Eh, you know what, this is not all I thought it was going to be. And the only reason he ever really will play it is when his grandfather is sitting in the same room telling him how to play, and I think he's just messing with him because it gets his grandpa really mad when he just doesn't play the game right, and his character will die and die and die, and it never learns, you know, and he never gets further than level one, two minutes in, you know, and it just drives his grandpa nuts. So I think he just sticks around and plays it when he has an audience to see if he can piss people off. So he tells me that day that he was interested in playing the Xbox, and I was busy in the kitchen, and I said, Well, okay, check with your Papaw. And he came, he said, Okay, and then he came into the kitchen, a couple feet away from me, and just kind of tested out the conversation, which I thought was really cool. I was being his sounding board at the time. He just walks up to me and doesn't wait for eye contact or anything. He just says, Hey, grandpa, help me with x box, please. And it was perfect. It was a perfect sentence, you know, and I told him, Yeah, that's, that is perfect, great job. That's what you'll say to Papaw, go ahead. And as soon as he got out the door - his Papaw was outside - as soon as he stepped out the door, I had the windows open, and I heard him. He just totally screwed it up. But he got it right for me. You know, he was getting nervous, I think as he got to the door, and by the time he got down the steps and across the yard over to where his papaw was sitting, he had it all screwed up. But his papa was able to understand what he wanted, but he had such a perfect sentence for me. And he just kind of ran it by me to see if that was the way to go. And I thought that was amazing. 

Shannon Chamberlin  6:50  
Another thing that he did within a day of that was he came downstairs after a bath and he was just kind of hanging around. And then he decided that his legs were itchy. And he said legs itchy, legs itchy, legs itchy. And I had him grab this bottle of lotion that I had right next to him where he was standing and bring it to me and I put a bunch of lotion all over his right leg. And while I was doing it, I was almost done with that leg and he tapped the bottle while I was still working on his leg. He tapped the bottle and said more, some more. I need some more right here. And he actually tapped his left leg which, usually he gets it all confused, and he'll tap that same area that I just treated and he'll say, Yeah, I need some more right there or, you know, something that doesn't exactly match what he's probably trying to say. But he had it completely right this time. My legs are itchy, Okay, here's the lotion, I need some more on this other leg that you haven't done yet. I was amazed! 

Shannon Chamberlin  7:56  
One other thing I wanted to say about that: I think it was the same day as the Xbox thing. Yes! It was the same day. His grandpa came into the house because he had to hook up the Xbox, and he was on one side of the entertainment center, and Jacob was on the other, and normally he's not paying attention to what the other adult is doing. You know, he doesn't really care. But his grandpa told him, Open that glass door, okay, it's one of those older entertainment centers, really big, and on one end, it's got a glass door where you can keep knickknacks or whatever on several different shelves. And in this one, there's two or three different decorative coffee cups and one might have some pens in it, one's got some other miscellaneous and I think one might be empty, and the one that had some miscellaneous in it, I think also had a small, tiny little Maglite flashlight in there. And his grandpa said, Hey, will you get me the flashlight in the cup? Open that glass door and look in the cup and get me the flashlight. And he only had to tell him twice. And then, he went directly to the cup, he deciphered the entire thing, what was going on and he just went right in there and grabbed the flashlight and it's a tiny little flashlight - I was really impressed that he did that. And he's has - he has just been paying attention and sticking with the conversation and being able to use some words to get what he needs. And it's just really impressive. Now we go through little spurts of this and then something happens like oh, I don't know a full moon or something similar and then all of a sudden we're back to not having any of these breakthroughs. So it's very frustrating. It's very up and down. But I am noticing some things such as words and comprehension and physical abilities seem to be making a comeback. It's been almost seven years since he lost his skills overnight. So I'm a little bit encouraged. 

Shannon Chamberlin  9:50  
However, I really feel like he's just ...you know, digging deep right now to make a good impression to help me get back to normal. And I think that's really sweet of him, and it's amazing that he can even understand things on that level. So we'll see. 

Shannon Chamberlin  10:07  
For more information about each of these episodes, you can head on over to psa.buzzsprout.com, where you'll find the transcript, show notes, contact email, social media page, coupon codes, and merch as well as a link to support the show, where you can just buy me a coffee for as little as $1. And a portion of the proceeds from that program and from any merch sold will go towards helping other severe autism families in need, who may not be able to afford the sensory items, therapy items or specialty foods for their loved one. 

Shannon Chamberlin  10:48  
In this episode. Today, I'm going to focus a lot on speech because you and I now have an opportunity to learn from an expert speech therapist. I was very excited to receive this compliment from this expert speech therapist who contacted me and loves my podcast. That's awesome. And she has offered to provide insight to my listeners on best ways to improve speech at home and how to help kids overcome communication problems. Now I know, with our kids, we don't really expect too much from speech therapy, not that kind of stuff that helps with school or jobs or anything like that. But, what a great opportunity. She said that we can ask any questions that we want she'd be able to discuss a wide variety of topics, and I look forward to getting more information to share with you but I'm hoping that possibly two episodes from now, which would be the week of December 7. I'm hoping that my episode on December 7, when it's released will have your questions being answered by this expert speech therapist. Her name is Lenora Edwards, and she's participated in dozens of other podcasts. And I think it's a really great opportunity. So, if you have any questions, I would like you to email or stop by my Facebook page. So, the email is contact.parentingsevereautism@gmail.com. And the Facebook page is just called Parenting Severe Autism Podcast. Either way you go, just shoot me your questions, I will collect all of your questions, and I've got some myself and then we'll pick Lenora's brain and see if there's anything that she has that we can benefit from and pass on to other people who are working with our children, or family members who are dealing with our children. And maybe there's something going on, something we can use. Lenora's got over 10 years of experience treating children and adults. She's the Chief Knowledge Officer of Better Speech, which is a leading online speech therapy provider, which has over 150 speech therapists. So I think this will be fun, it could be beneficial. It could also go completely the other way, as you know, dealing with things like this for our kids. You have to try, and if there's nothing there for you...well, you know, that's kind of what we deal with anyway, right? 

Shannon Chamberlin  13:13  
So, just to get your brain working and, if you can't think of anything right now, usually, if I am approached by something like this, oh, do you have any questions? Well, no, I don't, not right now. I'm just overloaded with the possibility that you might have information for me, and now I'm so excited, I can't think! Right? So I'm just going to talk about a few other instances throughout our son's life that involves speech and certain situations around that speech. And maybe that'll get your wheels turning in order to submit some questions that I can ask Lenora on an interview-style podcast, okay? 

Shannon Chamberlin  13:50  
So, when I first met Jake, he was, you know, six years old, and we took him to a really big zoo. It was a really big zoo, not a little tiny in-town Zoo, you know, we went BIG. And this was my first experience out in the world with this child, and it was awful. It was so miserable, just terrible. He was crying all the time. And then he wouldn't cry, you know, but then he would cry. Every picture that we have of that trip, his nose is red and running and his eyes are teary and you know, he's just miserable. I was miserable. I didn't want to say anything, because I hardly knew these guys. Man. It was damaging, but you just couldn't have a good time with him. And I didn't realize that that was what autism was like. I didn't really I just thought, well, this is awful. You know, I can't wait to get this over with! Well, newsflash, it doesn't ever end. That is the way it is. It's always miserable. He's always crying, if he's not crying, I'm crying. You know. And so during this terrible trip, we saw that the big bears were getting fed. So, we hustled on over to get closer because we could see the handlers or whatever they're called, throwing fish at the bears and the bears were catching them. And so we got up there, and at this point, Jacob was not crying, and he was actually paying attention. He loves animals, wild animals and stuff, of course. So, we're watching her feed the bears, there's one way over on the left and one way over on the right, and we were to the right of the bear on the right. So, the one on the left was catching these fish and just shoving them in his mouth, just no problem, no problem. And she comes on over to the one on the right, which is much closer to where we're standing. And the first one, the first one she threw and the bear caught it, but our son wasn't looking at the time. So he looks back, and there's another fish flying through the air, and it just, it just smacks the bear on the face and falls. The bear totally did not catch this fish. Just smacked him in the face. And Jacob pipes up, you hear him say, Oh, what the hell was that?!? And everyone around just was cracking up at this kid who had no other words the whole time, you know. So that was really funny, and I think that he picked that up from somewhere. And I don't know where but as you may have learned, he's really into movies and stuff like that. So I think that he picked it up from a movie or a game before I even met him. 

Shannon Chamberlin  16:23  
Another time. He was about nine years old. And he would always as I mentioned, in another episode, he had to have a pillow and a blanket in his IEP on the bus because he had a long bus ride to school. So, he would get on the bus and kind of take a nap on the seat until it was time to get up and go inside the school building. And we received a phone call and a note praising our son for waking up on the bus, stretching, and going, "Oh, shit." And the teacher was out there on the bus waking him up to get him in the school. And that's what he stretched and yawned and said oh shit and she was so excited, because he used it in context. It was perfect, you know. And of course, she had to tell us and she was just so so excited that she didn't even reprimand him at all. 

Shannon Chamberlin  17:12  
And then just recently, we had to take him in to the oral surgeon. And, this is Oh, man, this is another nightmare coming up pretty quick. He has his wisdom teeth coming in, and they're causing him pain. And you know what happens when our children are experiencing pain and discomfort. So the dentist gave us a referral to go to the oral surgeon and get seen for that. So we were in that office the other day, it's scheduled for the 21st of this month, and I am so afraid but the point is that when we're sitting in there, and they had already-he stood still for his Pano X ray, it was great. He starts using words. And I don't know why, but he started talking about the movie Full Metal Jacket. That's his favorite non-kid movie. And I think it's because of all the yelling and swearing that goes on in there. He thinks it's hilarious. And he's in the consultation room with us. And he just starts laughing and hollering I'm a fat body fat body fat body, I'm a fat body, and he is nowhere near a fat body. But that's part of the movie. And the next part after the fat body scene in that movie is just a bunch of expletives. It's R. Lee Ermey as a drill sergeant, just yelling at these guys, cussing them out, you know, and he starts scripting the movie, that particular part of the movie, it's his favorite part. And I just, you know, I said, No, we can't do movies in here. We can't do movies in here. Okay, you know, finally he stopped. But I also feel really bad because I don't like him using those words fat body. I don't care if he cusses you know, which I'm going to touch on in a minute. But you know, just because he's rail thin, if he sees anyone that reminds him of the person in the movie, by their body shape, he'll start saying fat body. 

Shannon Chamberlin  19:05  
There was one time when he was about probably 10, and his dad had him at Walmart picking up some office supplies or something. And he used to be able to go over to the bins of movies and video games and just you know, have a ball looking at all of those. So he was doing that and his dad was you know, just a few you know, a little while away. You still within viewing distance. And Jake runs over to his dad says, Come here, come here. I gotta show you and he's pulling him all the way, and his dad's like, where are we going? This is nowhere near where you're supposed to be. And he pulls him into this electronics aisle and there's this hugely overweight man, and he starts pointing. Now, these two guys are rail thin. You know, they're very lean, son and father here very lean. He starts pointing at this poor man and saying he's so fat. Oh, it's just disgusting, Disgusting fat body and my spouse was so embarrassed. He didn't even know what to do. He apologized profusely and told him this is not how we talk to people or about people. You know, that's a movie. It's not okay. But that was another weird speaking thing. And I've noticed a common theme with all of these things is swearing. Have you ever noticed that if your kids have any verbalizations at all, do they normally revolve around exclamations like that? Because we've talked about it, my spouse and I, our son seems able to use swear words, easily and in context. In movies and games, and in real life, these words are not spoken softly. They are usually punctuated because they're being shouted. They are exclamations. 

Shannon Chamberlin  20:52  
We've also noticed that he only responds to exclamations, whether they're positive or negative. If I was to say, hey, great job, that's awesome. Yeah, fantastic, good job. - He doesn't appreciate that he actually gets a little bit angry if he does something good, and I calmly say, Great job, that's great. You know, I have to constantly exclaim, how great it is. I have to be very bubbly, and you know, over the top, everything is over the top, all the time, and it's really exhausting. I mean, it's fine when he's a kid, and maybe into early teenage years, but you know, 21, now we're going on 22 years old, and I still have to do that. I still have to muster that energy up from my toes and exclaim what a great job he's doing, or whatever it is. Everything has to be over the top, or he thinks it's not good enough, and he'll throw a fit. And also the same thing, if he is doing something that we really need to get him under control from, you know, if he's really flipping out - not having a meltdown, but just behaving badly. He has that tendency, too.  You can tell him calmly - and see, he'll do this in public, he'll...he'll do stuff in public where we don't want to have to yell or exclaim anything, you know, we want to quietly defuse the situation, and he won't respond and won't respond and won't respond, and he'll do whatever he wants, and just keep doing it and keep doing it. Even if it puts him in danger, like a health risk or something. You know, if he's eating off of a stranger's plate or something, yes, that stuff happens, you know, but he will not stop unless we actually exclaim that he needs to stop or we, you know, freak out and just yell something. But otherwise he won't respond. 

Shannon Chamberlin  20:52  
And he actually has, he has two half siblings, they all share the same mother. And the boy is the same way. We had to raise him for a little while, because no one else could handle him. And we noticed that he actually seems offended when you want him to use his brain if he has to, you know, do math or do some writing or just answer a question with a real answer, and he has to use his brain, he's offended. And he does not respond to anything but yelling or inflammatory speech. And he is not on the spectrum. He's been diagnosed in the recent past with other problems, but he's not on the autism radar at all. So I think that's interesting. 

Shannon Chamberlin  23:27  
So, I was wondering if any of that would help you think of some questions or some situations that you've been in with your child or that your child has been in with speech therapists or educators or family members or anything? If you have any questions about situational speech (I don't know what else to call it) or any, any speech questions at all. Whether it ties in with behaviors or ties in with other aspects of life. I think this is a great opportunity for you and me to get some answers to things that maybe the therapists have never answered before. We'll speak with Lenora. Just send me your questions on the social media Facebook page or through email, and we'll get to it. Ya know?

Shannon Chamberlin  24:12  
I can hear that he has arrived from his journey, so things are getting a little bit crazy in the house and I have run out of time. Thank you so much for listening. I hope you get through the full moon and through the rest of November. I think in my next episode, we're probably going to talk about family because it's that time of year, right? You hang in there. You're a superhero.