Adventures in Parenting a Child with Unique Communication - Severe Autism

This week's episode dives into the humorous and heartfelt moments of parenting severe autism while highlighting communication challenges within the family. We discuss the impact of outside influences, share lively anecdotes, and celebrate the small victories and breakthroughs that define our experiences. 
• Contemplating media influence on son’s behavior 
• Reflecting on alarming moments with "The Tweedles"
• Gaining valuable insights from an autism therapy group 
• Observing the impact of stimming on the body
• Celebrating communication breakthroughs through mealtime interactions 
• Highlighting humorous, everyday moments that shape understanding 

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. In my last episode I said that this episode would contain more information and misjudgments about that nonprofit autism organization that we got involved with, but so much has happened in this past week, mainly revolving around communication, and some of it's annoying, some of it's exciting, some of it's just plain funny and I'd really rather just share that because all in all it's pretty positive and I think once in a while it's fun to just talk about fun stuff, positive stuff that's going on with severe autism in our lives. So I hope you enjoy this episode.

Shannon Chamberlin 0:55

Remember, if you would like to support the podcast, there are several different ways you can do that. Of course there's the Buy Me a Coffee program, where you can buy a coffee for as little as $1 and buy as many as you want. We do appreciate that I don't get a lot of donations, but I do have a good intention of sharing it with some other severe autism family who cannot afford the things that they need for their loved one. You can also get some fanfare at my little store. It's just got my logo and some taglines on some of the product, anything from wine tumblers to screaming pillows, and you can get any color you want. I think I've got some long sleeve t-shirts and tote bags and stuff like that, so if you would like, you can check that out. Of course, I have coffee mugs I'm a coffee-holic and I figured everyone else just must be too and you can always send me an email if you have any questions or input. You can reach me at contactdotparentingsevereautism at gmailcom and, of course, my hosting platform for this podcast is psadotbuzzsproutdotcom. I think you can go there and access all of my show notes, of course, all of my episodes, and there is a little fan mail text messaging system in there. So, anyway, let's get into this.

Shannon Chamberlin 2:09

First, I'd like to get two little things off my chest that are mostly concerns for us, because they're outside influences on our son by people who don't think and don't understand the impact that they can have on him and the impact that that has out in the world which comes back to him. Even though our son is considered nonverbal, some of the things he is verbal about are swearing and derogatory remarks, and we think it's because every time these remarks are said in a movie or game or anything like that. They're exclamatory, they're very loud, they're yelling. He never sees people throwing insults that are kindly said with a smile and a whisper on TV, and that's his main influence always has been, as you know, media, media, media. So the repeating like a parrot is what concerns me, because we do hope to give him more opportunities to be out in the real world with other special needs people, such as that special needs summer camp that we like to send him to daily. We can't have him going around other people using these terms that he learns from movies and TV, whether it's derogatory terms or swearing, it's just not acceptable because, well, you know why.

Shannon Chamberlin 3:25

So first let me start with Tweedledum. Just the other day this happened. My spouse was in the kitchen and witnessed Tweedledum reach his hand into a bunch of food garbage, basically in the sink. You know, everything was being worked on and being cleaned and a lot of food prep had gone on and just lots of stuff was going on, and this man reaches his hand in there to empty some of the water off of the dishes. He had no business being in the sink. Honestly, it was not his turn, he was getting in the way. That's what he always does when we're in the kitchen. He has to go in the kitchen and get in the middle of it, and so my spouse witnesses him stick his whole hand down inside of this nasty ass sink and do whatever he wanted to do in there, and then just take that hand right out of the nasty ass sink and dry it with the hand towel that he has made available.

Shannon Chamberlin 4:13

For a very long time it's been a thing. He taught Jacob that this is for drying your hands. That's not my process, I don't like that at all, but that's the program that's going on in that kitchen. It's not my kitchen, I just have to work around these things. So my son is accustomed to going over to this particular cabinet and getting this hanging towel and drying his clean hands on it. So now my spouse and I are just completely creeped out knowing that he just took that nasty ass hand out of that nasty ass sink without washing it and dried it on a towel that my son now is going to use within a few minutes, because he's constantly sticking his hands in water and drying them off as a nervous twitch and then guess what he does with his hands. Eventually they make their way to his eyes, his nose and his mouth and probably his ears. So we're horrified, we have to go and you know, just take care of all of this stuff now. We have to switch the towel out, get it away from everybody, ask the old man to wash his hands. Now the thing that grosses us out is we know his hands are dirty before they got in that sink.

Shannon Chamberlin 5:18

We have seen the things that he does, the way that he lives his life on a day-to-day basis without washing his hands. We pay attention because everything that everyone else touches in the world is a concern for us about our son. We have to pay attention, we are hypervigilant about this, because he has no fear. He does not understand germs or transmission or anything. He just he doesn't get anything. We try. He doesn't understand a freaking thing. That we try to tell him Nothing, nothing about danger. He doesn't get anything. We try. He doesn't understand a freaking thing. That we try to tell him Nothing, nothing about danger. He doesn't get it. So at that point he might as well be too. The only reason he understands stuff is just like a toddler, if he were to touch something and it bit him or it was hot or it hurt him in some way, then he'll understand. But he doesn't understand the transmission of germs and stuff like that, when you're putting your hand in something... that was just bad, totally wrong, wrong thing to do.

Shannon Chamberlin 6:08

And what horrifies us is that we know that this happens on a regular basis and we can't keep up with it because we're not on the same floor. You know, it used to be my kitchen, my house, and I knew everything that was going on. I had an eye on everybody, I knew when my stuff got used and I lived on the main floor. But now I don't. All of my stuff is on a different floor. So I am on a different floor and I can't keep my eye on it. I can't keep my finger on the pulse and it's really maddening.

Shannon Chamberlin 6:36

Now, the thing about derogatory comments is Tweedledee. The other day my spouse and son were coming towards the house on the sidewalk and Tweedledee was sitting outside and he rarely ever greets any of us. He doesn't really acknowledge any of us unless we're like in each other's way or something like that. Every once in a while he'll reach out and be social, but he never really greets any of us anymore and this day he decided to greet them. He just looks over at them. My son is leading the way, dad's behind him and he says hey and uses a derogatory reference to our son, just treating him like he treats his own brothers and stuff.

Shannon Chamberlin 7:13

That's how the Tweedles talk to each other, but that's not how you talk to our son. I can't even say the word on my podcast. But that's not how you talk to him. Because what's he gonna do? First, he doesn't know what that means, thank God. Second, he's gonna use that. It's gonna be stored in his mind now because of the way it was said, with the punctuation on it, and then the next time he sees somebody and it reminds him of that situation, he's gonna reach out and say it exactly like that to that person. And God forbid. I mean, I know that he does this and I am yelling at the Tweedles constantly for years. Stop saying these things around him. He is a parrot, he's going to repeat it and it's going to be the wrong time, the wrong place. You are going to get my son's ass kicked is what's going to happen. This is how bad these guys are. They do not think he doesn't understand anything. All he understands is the way that you said. It is inflammatory and he likes it and he's going to use it now. So that's a huge concern for me and I just wanted to get those two things out of the way because pretty much everything else I have to say is positive.

Food Preferences and Communication Patterns

Shannon Chamberlin 8:16

I do want to say a couple of things about that non-profit organization that we were blessed to be involved with. Most of the kids there were nonverbal and pretty severe, but a couple of them were pretty high functioning, and this was my first exposure to a wide variety of kids with autism. I'm kind of like a scientist at that point, you know, like studying everybody, and I didn't realize how broad this spectrum really was. It became more obvious as years went on Once we got away from this autism group. I mean it became more obvious as years went on. Once we got away from this autism group, I mean it got sickeningly more broad, as you know.

Shannon Chamberlin 8:48

But this one kid he was probably 15, maybe, I don't know, 15 to 17, somewhere in there. He seemed really grown up actually and he was really cut like almost like a fitness guy and you could see every muscle he had like an eight pack abs. He was just really cut. And I was talking to him briefly one day because we were still new to the group and when I saw my son put his swimming trunks on for the first time, I don't know, I was really self-conscious about my son's size because he was very tall but you could see every bone. He was very, very skinny and he just looked like a POW. Honestly it was embarrassing.

Shannon Chamberlin 9:28

But more than embarrassing, I mean I don't know, I don't know how to explain it. You know you don't want people to see him like that and think that you're not taking care of him, because I fed this kid a pound of food at every meal. I know that. I know that it was at least a pound of food at every meal and he wouldn't stop. I mean, he just eat, eat, eat all the time. But he was so skinny and I never really noticed until he was in a group of other kids around his age and around his size with their clothes on that he takes his clothes off and has his swimming trunks on and it was just stark difference. Everyone else had meat on their bones and my kid didn't and I was just really I don't know, I can't. Embarrassed isn't the right word, but it kind I mean, I don't know, I just I didn't want anyone to see him. I felt like he should put his clothes back on.

Shannon Chamberlin 10:17

It was, he was just so small, so skinny. You know, I told this young man that I can't believe how skinny he looks. He eats all the time, he eats a lot of food and he eats really healthy. I just can't believe he is so skinny. And the boy said it's because of the stimming, because I stim a lot, lot. And my doctor said that it's my stimming that does it. And that's the kid that's really cut. You know, he just he seemed really intelligent about his condition and he seemed to really have a handle on how his condition affected his condition, if you will. It was really enlightening to talk to him. I was glad to know that someone immediately looked at my son and knew oh yeah, well, that's just because he stims a lot.

Shannon Chamberlin 10:55

And, as I mentioned, my son's stimming is very violent. It's a terrible cardio workout. It'll drop your ass if you try to do it as long as he does, even for, you know, 10 seconds. It's exhausting. So it makes a lot of sense and as I was watching these kids in the pool, I noticed all the different things about all these different kids. There was one boy who would just count every other tile or something and he would just spider man up and down the wall of the inside of the pool only touching certain tiles, and that was his whole night. That was what he did and they allowed it. Everything was fine. He loved to do that and it was very calming for him.

Shannon Chamberlin 11:31

And then that girl I mentioned was very interesting. She did not talk, she only made beeping noises and clicking noises with her mouth and she would always have her fingers moving up and down and sideways, up and down and sideways, and it was almost like she was typing in the air. She had a very interesting pattern about her and it was always the same every time, just like my son's stimming is always the same every time. So I'm believing that that was what she was doing and it was very interesting because of the noises that went with everything. She had it perfectly orchestrated. I watched her effectively communicate with the lady that was running the show and I didn't understand how, but they had a full conversation. So I asked this lady later how did you know what she was saying? And she said that that young lady had developed her own language when she was I don't know like four or five. Basically, anyone who wanted to be in her life had to conform to her language that she created, and you just had to learn her language as a second language to be able to speak with her. And there was an actual pattern and lingo to all of this that was coming out. And there's another completely different thing that I never knew happened, and now I want to get into some of the communication that my son has shown us this week.

Shannon Chamberlin 12:45

Our cupboards have been pretty bare lately, so I'm just doing what I can. We didn't have noodles, so I made chicken soup without noodles I just use a bunch of vegetables anyway and I also made a big side of rice, just in case you know. And then when it was time to serve everything to Jacob, I put a little scoop of rice in there, just to make sure he was, you know, getting something a little more filling than just the soup. And then I put the soup on it and I served it to him. And a lot of times, when he's done eating, he'll come downstairs without washing his hands. He'll usually, if he didn't get enough, he'll come with his whole dirty dish and his dirty hands and just say I'm all done, I want some more. Other times he'll just put everything in the sink and wash his hands and then come down and tell you he's done eating. Every meal he has to lift up his shirt and show you his oatmeal, which is his belly, as if you can see his food in there. So eating is a big deal. It's a huge production because we have to ogle over his belly at every meal.

Shannon Chamberlin 13:42

The night that I served the soup, he didn't come down at all. Sometimes he'll do that, but I thought it was strange and I mentioned it to his dad that, wow, he must have got full, I guess, because he didn't come down to show us his belly or anything. About an hour later we put him in the bath and when he got out of the bath his hair was still very wet when he came downstairs to tell us he wanted to go to bed. So I just grabbed a towel and we were all three down here. We just were very relaxed. Everything was quiet, the lights were dim and you know we're just chilling out.

Shannon Chamberlin 14:10

I'm massaging his head with this towel, getting all the layers dry and just trying to relax him, because he was pretty high strung that night anyway, that whole day actually. There was a moon, of course, and I got his hair nice and dry and after what I thought would have been a very relaxing head massage, I let go. And he acted at first like it was very relaxing. And then he stood up and he put his hand out to me a stop, a stop hand. He put that out to me and he actually said just stay away from me, shandall, just stay away, okay, stop, just stay away from me. And I okay. I just looked at him and he left. He didn't want me anywhere near him. I had no idea what had happened with that, I didn't know.

Shannon Chamberlin 14:55

But the next day, when it was time to eat, I asked him if he wanted more soup and he said yes, I heated up the rice just in case it was still separate, and I went up there and I was like you want some soup and rice? He's like no. I said, oh, okay, so I'm now. I'm pointing at the rice and then I'm pointing at the soup and there was this whole charade going on and he says he's very nervous at this point with his hands and his actions. He points at the rice. He goes yes, rice, and I was like you want rice? He says yes, rice. So what about soup? He said no. I said you want rice, but you don't want soup? He says yes. I'm like well, no, I can't do that, you need something more than rice, buddy. I said don't you want some soup? And he's looking at the soup, but he doesn't. He's saying he doesn't want it. So I said are you sure you want some soup? He goes chicken noodle, yes. And I said well, it's not chicken noodle, it's just chicken. He says yes. I said okay, and then I realized like oh, okay.

Shannon Chamberlin 15:53

So it seems to me that if he's going to have something extra in his soup, he wants noodles, not rice. That's what I'm gathering from his actions and the words. So I asked him do you want soup in this bowl and then rice in a different bowl? He says yes, yes. I scooped some rice into one bowl and he's watching me very intently and I set the bowl aside and then I grabbed another bowl and showed him the bowl and started scooping soup into that and he looked so relaxed and happy. He's like yes, so I figured it out. So now we've agreed that I will not put rice in his soup or I will just give him chicken noodle soup.

Shannon Chamberlin 16:32

I didn't know he used to like rice in his soup, now he doesn't, so that's fine. I was really happy to get that information out of him. I love it when he tries to tell me what he likes and what he doesn't like, because his preferences are important. You know how can you just go through life and deal with what everyone else wants you to have, you know, so that's awesome. So I think that the whole stop hand and telling me to stay away from him is because he was pissed off at me about the soup, because it was the same night that I first put the rice with the soup. That's the only thing I could think of. There was no other reason. Everything was going great. So deciphering the communication from Jacob is a constant, and I'm glad for it, because at least he knows what he likes or what he wants, and at least he's that involved in his own life. Sometimes I wonder.

Improving Speech Through Lip Positioning

Shannon Chamberlin 17:22

Another thing that happened this week was hilarious. He comes downstairs, he wanted food and the food was cooking and he knew it, but he just, I don't know, for some reason he wanted to harp on it and he says look. And he lifts up his shirt and holds it up with his chin, he grabs his belly around his belly button and he starts talking with his belly button and he's squeezing it from like, okay, so let's say he's grabbing on the top and bottom around his belly button and squeezing it that way and he says I'm hungry. And then he just keeps saying I'm so hungry, I'm so hungry, and then I was laughing at that. So then he takes the skin all around the belly button to form it into a big O shape, right, and he does that and starts seen him do this before and the form was just right, you know, for the words that he was trying to say and the sound effects. He would move the belly button to form exactly the right shape that your mouth would make if you were to make that sound. It was amazing. Then he said he moved it to say oh sorry. And then he moved it to make some kind of funny sound and I was laughing so hard. And then he just takes his hands away, puts his shirt down and looks at me like what Acted like nothing happened at all. Usually if he makes you laugh at him, he'll laugh too, but that was great. And then today I had two breakthroughs. I taught two lessons today.

Shannon Chamberlin 18:55

Believe it or not, he has been doing the wrap the lips around the teeth thing for so long. He almost cannot talk any other way. It is so hard for him to move his lips and get them out of his own mouth. When I demand that he speak to me properly and he just gives up. He won't even try. And you can see him try. He takes a big breath, he puts his face up to the air and he's just like really trying to figure out how to talk without wrapping his bottom lip over his teeth. He can kind of do the top lip, but he just I mean, it's bad, it's really bad. He is programmed to speak that way and every once in a while, if I get him high enough, he'll use his mouth normally, but for the most part he is stuck. He's been doing it for so long. I'm really fed up with it. But I can't show him that. I have to act as if it's a new thing every time. I try to correct it. It's really touchy and hard to do.

Shannon Chamberlin 19:58

But this morning I found some grace and I was up there in the kitchen and he was trying to talk to me he was trying to spell a word. I think he was trying to spell what a game, perhaps because he said you know, w, with his teeth all wrapped around himself. He says W-H-A-E-A-N-E. That's how, basically, what it sounds like. It sounds worse when he does it. But I was like what, what are you saying? And so we worked on this for a few minutes and I was like it's the G, Is that aG that you're saying? He's like, oh, nevermind. And I'm like, no, seriously, what are you? What is this that you're spelling? Can you spell it again? So he does it again and again and I, man, I can't understand you. There is no letter that says what are you saying.

Shannon Chamberlin 20:44

And he just he was ready to give up, he didn't want to try it. Instead, he started just trying to say the word instead of spell the word, and I would not allow him to do that because he's still not saying it right. So I'm getting on him about it, but I'm trying to be nice and trying to be a good teacher and trying to explain to him that I cannot understand you. So I would do it with my teeth covered, with my lip and then do it normal. And then you know, and I just kept trying to do it and have him watch my mouth. This is how we move our mouth. We have to move our mouth. You cannot speak like that. He's watching me, but I mean, it's an old story.

Shannon Chamberlin 21:20

He's tired of it anyway and he's losing interest and I am not. I am so fed up. I never lose interest in this. I want him to stop wrapping his mouth up. It's just, you already can't talk.

Shannon Chamberlin 21:31

Why are you making it hard for yourself? You know, I want people in the world to be able to help him and understand him and understand what he needs. If he can make the connection from his brain to his mouth to be able to tell someone what he needs, if he can make the connection from his brain to his mouth to be able to tell someone what he needs, which is not a possibility most of the time but just let's say he's in need of something and he's around only strangers and he knows what he needs and then he wants to tell him. Like that, that's not going to work. I want people to be able to understand him and help him and it's crucial that he not make it harder on himself than it already is, naturally. So I'm just hammering this with him, and I finally got so fed up I took my own bottom lip and pinched it and pulled it away from my teeth and then I started spelling the words and saying letters, because I actually said you're saying G, it's just like Jacob, g, j, it's kind of the same. You can't say Jacob, you have to say and he does say it that way.

Shannon Chamberlin 22:30

So he starts now spelling his name, because if I say to tell me J, then he'll say A-C-O-B. He's always done it that way. But ever since he started this thing with the lips, he can't even spell his own name and it's just, oh, it's just maddening. Anyway, I'm like, no, you're not getting by with that. I see, that's the thing. I know, that you can say J-A-C-O-B. You have done it all your life, almost all his life anyway. So now I'm not letting this go, you're not going to get off on that.

Shannon Chamberlin 23:01

Now I'm like making him spell his name, I'm pulling my bottom lip away from my teeth and saying J-A-C-O-B, and then I'm wrapping my lip around my teeth and saying J-A-C-O-B, and he gets it, he understands, but he wouldn't do it or couldn't do it, I don't know. So then, once I saw that he understood what I was doing and I could see it in his face that he could hear the difference when I said these things. So once I saw that, I got happy and I was like, okay, well, let me help him. So I went over there I said I'm going to grab your lip and I very lightly of course pinched his bottom lip and pulled it away from his teeth, just like mine. So now we're both standing there and I've got both of our lips pinched and pulled away from our teeth, like mine.

Shannon Chamberlin 23:42

So now we're both standing there and I've got both of our lips pinched and pulled away from our teeth and I'm making him say J-A-C-O-B and he said it and it was perfect. And I made him spell that, whatever he was spelling, and it came out perfectly. Then I made him say it and it came out perfectly. And then I made him say something else and it came out perfectly. And I was so excited so I gave him a huge hug. I'm like, yes, I'm so happy, I knew you could do it, I knew it, I can understand you when you talk like that. That's awesome. And I was just overly excited, as you have to be with him and with most of these kids. I think I was just super, super happy he started pulling his own lip away from his teeth and saying his name and spelling his name and stuff, and I would turn around and he would instantly open his arms.

Shannon Chamberlin 24:26

He was doing it to get the hug. He wanted that reward. He wanted me to be proud of him. He wanted me to congratulate him and just be happy and I was so honored that he cared and that he wanted that. You know, and I know it feels good. I try not to give him anger because of the negative attention thing. He makes us mad as hell and it's not like we never get angry. I just I try to over-exaggerate the happiness to make him want that more.

Shannon Chamberlin 24:52

It worked this time. It was really great, and he's been coming downstairs. He got pissed off that I told his dad about it because his dad was still in bed and he just started coming up after we worked it out and I started to tell his dad and Jacob starts whining and getting in the way and not wanting me to say anything. Later on he came downstairs talking some nonsense that you couldn't understand and just mumbling, you know, with his lips wrapped up, and I said do you want to teach daddy how we learned to talk today? And he started getting mad. And then I said do you want to show daddy how we learned to pinch your lip? So he had already forgotten. And he starts pinching his lips closed, top and bottom. Just you know, with two hands just pinching his lips closed and trying to figure it out. I really think he was. He was like this doesn't feel right, but this is what I'm doing. But I know this isn't right. You know that kind of puzzled look was on his face, but he was trying. And then he did try to talk and he realized no, this is not right. I thought he was just being a goof, but I think that he actually did forget how we did it and he kept trying. He kept showing me and pinching both of his lips together, top and bottom, and I said, no, silly, it doesn't work like that. And finally I had to do it on my face again and show daddy. And then Jacob did it and he said something and it was amazing again - we could understand him again and now both of us are very happy with him. That's my big teaching moment with Jacob this week.

Shannon Chamberlin 26:11

Then later I had another big teaching moment. I went upstairs to prep some food for breakfast. Tweedledum was in the kitchen watching a pot waiting for the water to boil so he can make a little oatmeal. And he says I'll try not to get in your way, and I'm doing all this stuff. And I see him, he's just standing over this little bit of water in this saucepan. I said you ought to put a lid on that. You need a lid. And he goes no, I got to have it boil first. I'm like that's why you put the lid on. You know that, don't you? And he silently put a lid on. He didn't even say anything. And then a few minutes later he's like wow, you were right about that, it boiled really fast after I put a lid on it! He's 70 something... you believe that?

Shannon Chamberlin 26:46

Go me, I'm two for two today. Then he wants to tell me how he knows how to cook and his wife didn't when they got married but he doesn't know how to boil water. Hey, it's never too late to learn something new, right?

Shannon Chamberlin 27:00

In my next episode I'll talk more about this nonprofit autism therapy group that we were involved in. I really did learn a lot about perception and I started to get my first tastes of really being disappointed with what others think of my son, and we'll get more into that next week. You hang in there, you're a superhero.