EP 76: Private Needs, Public Stress, And The Cost Of Sleepless Caregiving

Sleepless nights, decoding a taboo topic with compassion and clarity...

Safety, dignity, and small wins guide the way while we keep reaching for calmer mornings and better tools.

• naming severe autism risks and caregiver isolation
• addressing startle responses
• coping with sleep deprivation and night chaos
• removing obsessional objects that spike aggression
• setting consequences for self-injury on pizza day
• discussing self-pleasure without shame while teaching hygiene

Please contact us at contact.parentingsevereautism@gmail.com. If you can share this episode with anyone in your life, please do that to help me out. I also have the Buy Me a Coffee program if you would like to donate or support me in any way.

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Transcript

Welcome And You Are Not Alone

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. Thank you so much for continuing to come back and listen to these stories about the summer from hell. It really was the worst summer of our lives. I'm hoping that if any of you listening are going through anything similar to what I am detailing in these stories, I hope that you understand you are not alone. There's actually thousands of families out there suffering from the same stuff. So you're not alone. Even if you cannot find a local support group that you can meet with for parents who are dealing with things like you are, there are a bunch of us on like Facebook and Instagram. Maybe that helps, but you are definitely not alone.

Early Years Vs Severe Autism Reality

SHANNON CHAMBERLIN 1:05

And if you are in the younger years or the easier times with your child right now, I'm not trying to scare you, but I'm hoping that these stories will kind of cushion the blow for you a little bit. Because one thing I've realized, other than knowing that one child with autism is one child with autism, I have not yet met a child with severe autism who has not become a danger to themselves or those around them. And I don't think it lasts forever, but and I don't want to say that I haven't met the child. It's the families, the caregivers, and the parents. I have not yet met a family who has said that their child with severe autism has just been a breeze. It reminds me of when our child was much younger, eight, nine, 10, 11 years old. He was a bit of a pill, but aren't they all at that age? You know, I I didn't have my own kids, and I mean, what's an inconvenience to someone who is not a biological parent? Everything. Everything's an inconvenience. So you don't really understand at that point, I didn't really understand at that point what was normal and what was more related to autism. I just figured it was him being him and everything was fine. You know, when the people who knew him before I came around would talk to me about him, they would say how great I was for being his mom and how hard it must be and how am I doing with all of it. And I would honestly say to them, I really think he is my soul child. I don't have problems with him at all. Um, he's just he's really good for me when I'm watching him. He's really good. And I don't know, I he's my buddy. I couldn't ask for a better kid, and they would always be surprised. And then I would be surprised that they were surprised. I don't know. Maybe I'm just used to being in chaos, you know. From a young age myself, I was always in a position of caring for someone with special needs. So I'll get into more of that later because it actually kind of ties into some of the things we've dealt with recently with our kids. So I'll have I just made a note so I won't forget to talk about that another time.

SHANNON CHAMBERLIN 3:10

Today I'm gonna go into obviously a few more of the behaviors we were dealing with. I wish I could lay it all out for you at one time, but it would be a couple hours, and I would probably need a lot of therapy afterwards. So I'm just gonna do it in little bite-sized pieces.

New Moon Triggers And Morning Routine

SHANNON CHAMBERLIN 3:23

I want to mention I'm recording this on like the 17th or 18th, and there's a new moon tomorrow. So I think today's the 17th. By the time you hear this episode, this moon will have passed. But it's a new moon, and my spouse and I were just talking about it. Usually it's a full moon when our child really gets out of pocket, but the past couple of full moons, he's been okay. But during the new moon period is when he has gotten really crazy. And this morning, before I realized that the new moon was coming tomorrow, he already showed us that he was not interested in being cool. I mean, first of all, this whole separation in the morning that I told you about in my last episode is still working. We are getting great results. We're still having very calm and peaceful mornings compared to what they were before. But this morning, he woke up and he was already high strung when he came downstairs to get his medicine. He did not have his water. And when I said, Do you have your medicine water very calmly because it was still dark down here and early and I was trying to be quiet, he says, No, just so loud, you know. And then um I said, Okay, well, let me get your medicine and let's go get some water. And he's like, Okay. It sounded in his voice like he felt that I was taking care of him and he felt comforted by that, and that he was gonna try to cooperate with me. And we got upstairs and I asked him to get his water, and he stormed over there with all his doom talk, and he got a little water. And he came over and I gave him his medicine, and I went and got a cup for his medicine candy, which is a liquid. As I was pouring that in there, he was starting to try to understand that he was needing to calm down. And I looked at him and smiled, and I just tried to smile at him very kindly, and I watched his face change to a calm, soft expression and a smile very briefly. And then I gave him his medicine candy and I explained to him that I will see you in 20 minutes, as I usually do in the mornings now, and he just wasn't having it. He didn't want to hear it, he didn't want to stick around for the reassurance that I would be back and all of that stuff.

SHANNON CHAMBERLIN 5:27

So I just came down here and locked the door as fast as I could because I knew something was up. And then he started coming down here. Like I said, he had only been doing it once a morning. Well, he whooshed down here as soon as he could and really jiggled that door and then stood there for quite some time until I said, You have 20 minutes. And then he ran back upstairs, and then he came right back down in about 10 more minutes, and he didn't jiggle the doorknob, he just stood outside of the door mumbling and moaning and doom voicing. And I went to see what was going on, just to check because I felt that maybe someone was invading his space. But by the time I got to the door to look up the stairs, I already heard him upstairs yelling at his grandpa, and I just mean talking very, very, very loudly and firmly and saying, Good morning, did you sleep good? And he's not really listening, and he's just got these little phrases on repeat. They're just programmed responses to stimuli, and he'll ask you that all day because he only has a few things that he says. So I could see that the grandfather was beginning to look like he was making himself comfortable in the house by putting his coffee cup down on the shelf and all this kind of shit. And I know that that's what Jacob was seeing too. It sounded like Jacob was nervous, and now I understand why. So instead of causing friction between me and the grandfather, I just explained to our son in front of the grandfather. I was like, Jacob, you need 20 minutes to yourself in quiet. Please sit down and relax by yourself for 20 minutes, so that the grandfather would remember that he's supposed to be out of Jacob's hair. But I'm pretty sure that's what happened with him today. I mean, yes, I do think he makes the decision before he leaves his room on how he's gonna act, but I think that his surroundings can help change that or support that, depending on what's going on in the house. So I know that the uncle and the grandfather were in the house and milling around, not personally interacting with him, but in the house and milling around, and their presence was felt by our son. And I think our son felt that it was a violation of his privacy and his morning time, and I don't blame him. Um, but he did wake up a little late, so he's gonna have to get up a little earlier, I guess. See these people they don't go to bed at the same time every day, and it's very unreliable. So anyway, that's what we're dealing with today. It's been a lot.

Boundaries With Family In The House

SHANNON CHAMBERLIN 7:46

If you have any questions, comments, or otherwise, and would just like to say something to me, please feel free to contact me at contact.parentingsevereautism at gmail.com. Yes, you can use any other manner of getting in touch with me, but that's the way I know that I'm gonna get the messages. For instance, on the Buzz Sprout, I don't even see the fan mail option anymore. So these are unreliable sources and the email is always there. So please remember that. If you can share this episode with anyone in your life, please do that to help me out. I'm really trying to expand my reach because there are so many more families dealing with this caregiving situation for severe autism than there are listening to this podcast. And it's just that they haven't seen it yet. Please help share it. I really appreciate that. And I also still have my little customizable store items linked on my website for Buzz Sprout. I also have the Buy Me a Coffee program if you would like to donate or support me in any way. Those are the two best ways to do that. Or you can also click on any affiliate links of products that might work for you. That does help me earn a little on the side without costing you any extra while you're just trying to get the supplies that you need for your family. Thanks for letting me plug that real quick.

SHANNON CHAMBERLIN 8:59

So today I'm going to touch on a couple of behaviors that were bothersome, but then I'm going to get into a subject that not many people talk about. Everybody needs to talk about it, but it's one of those things like, well, we're talking about our children doing something that is reserved for adults in regular society. And yes, I'm talking about self-pleasure. All of our kids are gonna get into that at some point. I'm going to discuss a little bit more of our experience with it because it has evolved since the last time I talked about it, and it all started evolving during this summer from hell, believe it or not.

SHANNON CHAMBERLIN 9:36

I just really quickly wanted to touch on how he developed this way of popping out at us from dark places at any time of the day, and he just started doing that to me again, like four days ago. And on the second pass by, I had to yell at him because it's it, you know, at first I thought that the reason I was so sensitive to it is because we were all sleep deprived because of his behaviors throughout the night. But he just did it to me the other day, and I'm still bothered by it. So I know that it's not that. I just it feels like I live in a haunted house, and I'm not signed up for that. I did not say that's okay with me. And I just think that the behavior is unwanted, it's unwelcomed, and I don't want him to do it. But he'll stand there in his room, for instance, with the lights out. He's got blackout curtains that are almost always drawn closed, and he'll just stand there. And then, as I mentioned, you gotta walk by his room to go to the bathroom. So I walk by his room, and as I'm halfway past his doorway, he'll pop out at me from the dark, and he won't say anything. He'll just put his face out or put his whole body out, and it's just right there in your face. And unless you come from a super zen peaceful background, that's not really a nice thing for people to do. And it's not something they can rely on you to be like, oh hi, because what you really want to do is jab and push, right?

Pop-Out Scares And Safety Risks

SHANNON CHAMBERLIN 11:05

So it's a constant battle for me because he's taller than me, he's popping out of a dark place, not making a sound beforehand. And I have had it drilled into me when you sense a threat and someone intrudes on your space, you should strike back. You should get them away from you as fast as possible. So I'm constantly trying to keep myself in check and remind myself that it's just him. And I mean, I don't know if I can help anyone out there understand how hard that is. It's just a a reaction, it's just a programmed response to jab or push, get that person away from you, especially being a female. I am not accustomed to allowing someone to invade my space like that, and it freaks me out. I hate it so much. But he would do it at all times. And he actually got in trouble a couple of times for doing this during the middle of the night because we're already sleep deprived. We're trying to walk through a dark house with no night lights. I've fixed that now, but when we first moved here, it wasn't set up. I didn't have any nightlights, I didn't have a way to see, and I wasn't allowing the kitchen light to be plugged in, that little light. I wasn't allowing that to be on during the middle of the night or anything in case he woke up. I didn't want him to wake up in a good mood by chance and then get pissed off as soon as he saw that that fluorescent kitchen light.

SHANNON CHAMBERLIN 12:23

So anyway, it's dark, is the point. And you gotta, you know, stumble out of bed, stumble up the stairs, stumble up some more stairs, and this kid will jump out at you from wherever he's at in the house. So it could be over by the back door. He has a couple hiding spaces where he can sneak into a corner and no one can see him as they're walking through the house until they get right up on him. So he would hide there, or he would hide behind something in the living room, or he'll just stand in the corner, like the blind spot of the kitchen, or he'll stand in the blind spot by the linen closet, or his favorite spot is to stand right behind his door and leave his door shut, but he will keep the handle cranked. I mean, he's not stupid, he's doing this on purpose. He'll keep the handle cranked so you don't hear him spin the handle, and then he'll just swing the door open and have a slow big step out in front of you, and just bam, you're right there in his face, and he's in your face, and it scares the shit out of you because all you're trying to do is go pee in the middle of the night. This went on for months and months and months, and we got more sleep deprived with each week that went by. The adrenaline that would end up pumping through our bodies as a result of him popping out at us in the middle of the night while we were simply peacefully trying to go to the bathroom kept us up for the rest of the night. I never did come up with a way to combat that except to tell him, stop it. Stop it, still works. You have to say it, stop it, stop it, stop it, just like that, and it'll work for him. He'll start saying, stop it, stop it, stop it. And he understands that he should stop whatever it is. There was just no rest for us.

SHANNON CHAMBERLIN 14:01

So by the end of our ropes, we found ourselves unfortunately swinging into black space when something would pop out at us or make a noise at us. You know, our eyes are still closed as we're trying to sleepwalk to the bathroom. It just scares the shit out of you. And the less sleep you have, the easier it is to get set off. His dad and I both found ourselves in that position. And his dad is, you know, he's a grown-ass big man and he's kind of dangerous. I mean, he used to do a lot of martial arts and stuff like that. He's like so programmed for self-defense, and he has programmed me for self-defense, but not against our child just because I was always at home alone and he wants me to know how to defend myself. And let me tell you, it's really hard to know the difference in the middle of the night between an intruder and a psychotic child of yours who's bigger than you. It's really hard to train your brain to think the right way. And that's another reason that we lock our door down here while we're sleeping for everyone's safety, if that makes sense. So anyway, there was once or twice, maybe three times, where I just reached out. I just I didn't even know who who or what was in front of me, but I knew that I was being invaded and I know that I hit him.

SHANNON CHAMBERLIN 15:19

And his dad, it scared him half to death because he knows his own capabilities. And of course, again, he didn't realize what he was doing. It was just a programmed self-defense response from having your space invaded while you're sleepwalking. Anyway, it put all of us in a dangerous spot, but most importantly, our son put himself in a dangerous spot by playing these little pop-up tricks on us, like we're in some kind of haunted house all the time.

SHANNON CHAMBERLIN 15:42

And he just did it to me the other day. The first time I just said, Dude, you scared me. And then on the way back out of the bathroom, he fucking did it to me again. And I yelled at him. I was like, stop it. So I let him know now that we're years past that terrible time, and now I've let him know this is the rule. It wasn't a fluke back then. You cannot do that to people. You must stop. So there's that.

SHANNON CHAMBERLIN 16:04

And another thing he was doing, he was doing these other this is just added to the menu, okay. Every day, this stuff was all sprinkled in throughout the morning, all the way through all night. I mean, this never ended, none of this stuff, unless he finally would pass out from exhaustion, which is also the only way that his dad and I ever got any sleep was to pass out from exhaustion. So during the night we would lie awake or half asleep and hear him stomping around the house all the time. So we never actually were comfortable enough to go to sleep. We were always listening for how bad is the damage? What's happening? Can we just leave him be? Or do we have to go up there? Does he need to be restrained? Does he need to be hugged and coddled? Does he need a talking to? Does he need food? What is going on? We can't see. You know, it just was a constant stress thing for us. So we never really did sleep. We just heard him all night. And by the time we would actually sleep, it was only because we passed out from exhaustion. And I think that that's when he started this this next behavior, which was a combination of throwing hard things down the wooden stairs that lead down to our area and then slamming the door between the basement and the kitchen repeatedly. He would open it, slam it, open it, slam it, open it, slam it, and in between there he would yell. So it in my mind it was kind of like, you worthless assholes, get up now. I hate you. You know, that's kind of what I heard in all of the stuff that he was doing. And I don't know. He would just find stuff to throw down the stairs, and I guess he would go pick it up because I never saw anything, but just so much noise.

Sleep Deprivation And Night Chaos

SHANNON CHAMBERLIN 17:42

I love to paint these pictures for you. Let me just say, we're passed out from exhaustion. He wakes up normally by standing on his bed and jumping down to the floor, and then jumping down the little flight of stairs, and then stomping through the house and yelling and doom voicing, and then hissing, and then running up and down the stairs, and then trying our door, jiggle, jiggle, jiggle, and then wow, wailing, and then going up the stairs, boom-boom, boom, boom, boom, boom, throwing shit down the stairs and slam, slam, slam, slam with the kitchen door. And we would wake up to the door slam and the stuff falling down the stairs. That's what finally would wake us up because we were up all night. And so it just kept progressing every day, every week that we were here, it would get worse and worse and worse, and he would sprinkle in more to the daily diet of insanity that we had to deal with.

SHANNON CHAMBERLIN 18:32

So then he becomes obsessed with this um figurine. I don't know, is that right? It's like a it's over a foot tall. It's a uh figure of the alien. So he's got this obsession with alien and predator. And you know, before the movie or movies came out about alien versus predator, my son was already searching for stuff like that on YouTube and he would find it. He he he can say anything versus anything, and he loves to look at stuff, you know, like crocodile versus Mickey Mouse or something like that. I mean, he'll just he he can just pick stuff in his brain that he wants to see and he'll type it out on YouTube and try to find it. So he was looking for stuff like that way before the movie or movies came out, and somehow he ended up with this very large figurine. I I I don't need I don't even know what it's called. It's a toy. It's a very large toy of the alien thing. Um, I don't know. It looks like it's been colored on with a magic marker. I think he got it maybe from one of the other kids in the family, but he became obsessed with this thing, just like he became obsessed with the alarm clocks and everything that he had before. But now this one was making him very evil and angry, and he would use it as fuel for his own fire. And I caught him doing it, like putting it way up to his face, and you can see the feelings that he gets about a certain toy or. Or game or movie by watching how he interacts and and what happens to his face and body when he does it. And I was watching him with this alien figure, and he was using it as like evil fuel, and he would get angry, very angry and mean and stuff. And so I um I told him to stop. I asked him to stop. He was very obsessed with it and he wouldn't leave it alone. And his behavior was getting worse and worse and worse every time he put a hand on it or even looked at it. I tried to just take it away from him and put it out of his reach, and he would just look at it and get pissed. That didn't work.

SHANNON CHAMBERLIN 20:33

So we gave it back to him, but then one day I stole it away from him and I hid it from him. And his behavior did get better. And I know that he was looking for it, and I know that he knows that I took it, but he never indicated any kind of you know, he he wasn't talking at that time, so he never gave me any indication that he was suspicious of me or that he was looking for the alien, but I know that he was. And anyway, that thing stayed in my office up on top of a bookshelf. I mean way up there, and it's got the alien, its head is shaped weird, and it's got this like point in the back top of it. And that little piece of that toy was, I guess, sticking up. I had it laying flat on a recessed top of a bookshelf. And one day I come in and he's got it in his hands upstairs. So he was in my office and he saw that little piece and he took the fucking toy back and he went evil straight away. I couldn't believe it.

SHANNON CHAMBERLIN 21:32

So now I have it again in my possession and it's been here for years. I can't let him have it. I was thinking about giving it to him recently, but I don't know, with his behavior today, I'm thinking, well, maybe not. Maybe I won't. It's also pizza day today, and he loves to be a jerk on pizza day. So he bit himself, and um, it was almost right in front of his dad. So when we catch him doing something, he gets in trouble. So now he's not getting pizza today because he was biting his arm.

SHANNON CHAMBERLIN 21:59

And I still have to get that stuff I was talking about, but I'm gonna get it soon, and if it works, I'll tell you guys all about it to keep him from biting his arm. So anyway, the alien is not a good friend for the family at all.

The Alien Figurine Obsession

SHANNON CHAMBERLIN 22:11

And now I want to talk about this taboo subject, which is self-pleasure. Um, we started hearing different kinds of upset from him in his room, and his uh behavior kind of wavered between two different types. Both of them were messed up and evil sounding, but one of them was like an immediate jump out of bed and run around the house and torture everybody. And the other one was like, um, you would hear him murmuring and sounding mad but calm. And he was still in his room. And we were trying to figure out well, is this is this him calming down? Or is this a new thing that we're gonna deal with now? What is this? And it didn't sound happy, but it was early in the morning all the time. We were always still in our room. The murmuring would suddenly become very um angry and then disappointed. And it was like you would hear him talking and then you would hear him clearly saying Spider-Man, Spider-Man, Spider-Man, Spider-Man. Now, this is something very strange. Like when we asked him to sign his name on a document in Wisconsin, he signed Spider-Man. So I'm just saying, like, you don't know what Spider-Man means. No one knows. But we would hear him go from incoherent mumbling to Spider-Man, Spider-Man, Spider-Man, Spider-Man, and then you would hear, no, no, no. And he would jump up out of the bed, and you would hear him with every no, no, no, he would stomp his heels into the ground. Then he would start crying. It sounded like in his wails, you could hear the sound of frustration or tears or crying. We were like, okay, okay, whatever. Well, we never put it together until we started noticing other things. So it was basically me. I notice all of these things that others don't. I'm very sensitive to smells, so I started noticing a new smell. Remember, I told you he smelled like red onions when he got mad. Well, his room started smelling absolutely terrible. I couldn't place it. It was awful. And I washed his sheets, I washed all of his clothes, I just kept washing things and washing things, constantly throwing him in the bath, as you know. The smell wasn't going away, and I couldn't figure out what it was. I'm looking at the bottom of his shoes. You know, what is the smell? Everything was getting cleaned all the time, and the smell wouldn't go away. Well, one day he had his shirt off because it was summer, and um, I was trying to get him to go swimming, and I was gonna put on some sunblock on him. He's super thin, you know, he doesn't have um bigger people problems, like when our skin, when we get rolls touching each other and stuff like that. He doesn't have to deal with any of that. So this was out of place for his existence and his body, but he had like this discoloration all over his torso where it was like really, really dark brown. And I couldn't figure out what is this. I put him in the bath every day, and I showed him for years how to scrub himself. Obviously, you can't trust him to do it on his own. If you're just throwing him in the bath to keep him happy and quiet and peaceful, and you're not doing it for actual hygiene, there's no real guarantee that he's getting clean. Um, but I would ask him to wash himself anyway. I couldn't figure out what this discoloration was on his skin. I kept picking at it for days, throw him in the bath and scrub him, and I just couldn't figure it out. And then one day I got real close. I, you know, took my glasses off and I really looked at his skin, and his belly button was absolutely full of gunk. I mean, he didn't even have a recess anymore. It was solid full of something, and he had all this dead skin. And so I took a Q-tip or something and I started digging into his belly button. And as I did, that smell that I had been smelling was just unleashed and it just stunk up the whole kitchen, and I could hardly breathe at all.

Self-Injury, Consequences, And Limits

SHANNON CHAMBERLIN 26:04

So I instantly started him a bath, and I'm trying to tell his dad what I don't even understand what's happening. He's rotting. And then we started realizing that he was hiding his underwear. He had an entire stash of underwear that had been soiled, and he never put it in the laundry. And okay, I don't know how I didn't find that before, but he was hiding it somehow, and I found him. I don't know, I think maybe he moved the stash out into uh like public view at some point. It was right around the same time I started to put all this stuff together, and I realized that he was actually covered in his own ejaculate, and that's what he was doing. That's what all that stuff was. This Spider-Man, Spider-Man, Spider-Man, Spider-Man was his leading up to his climax, and then the climax is what caused him to scream and cry no, no, no, no, and jump up and down and try to cover everything up.

SHANNON CHAMBERLIN 27:00

And what surprised me about it is that we have never taught him that touching yourself is bad. And like I said, he's not been a sexual person at all, and I always defended him. Neither one of us ever gave him the idea that it was bad to touch yourself ever. We don't, we don't care about that stuff. We just want him to stay safe and alive, do what makes you happy.

The Taboo Topic: Self-Pleasure

SHANNON CHAMBERLIN 27:20

Also, in Wisconsin, they tried to get us to sign a permission slip for him to take sex education, and it was very involved, and they wanted him to be super responsible and it just made no sense. Like my kid can't he can't do this. I am not signing off on this. So he never did take sex ed. He shouldn't have been in that class in the first place. Yes, I think that he should have some kind of education about the way the body works and the birds and the bees and all that, but that was not the right way to do it for him in a school setting and trying to have him learn about it as a study subject. I just he that's not where he's at. So we didn't send him through that. Um, but we did, as you know, we tried to talk to him a little bit in a super simple way that he was hopefully understanding. Like, this is a squirt bottle of lubrication so that you don't make yourself bleed again. You know, it was just basic. Like, it's okay, just do it in your room. That's private. Don't bring it out here, don't show anybody, but it's okay, just do it in your room or in the bathroom or whatever.

SHANNON CHAMBERLIN 28:26

So we never attached shame to that act. And I was surprised that he would get so mad, but I again I'm not surprised because I wasn't around at this time, But when he was a baby, he would get really upset about soiling his diaper. And that's why he got potty trained so quickly. He did not like being in a dirty diaper. And also he would go behind the couch to fill his diaper before he got mad about it being full. And so he's always been kind of a private person in that regard.

SHANNON CHAMBERLIN 28:53

The stench was his own ejaculate filled and dried in his belly button. And the brown skin I began to scrub with a rough washcloth instead of the bath puff and soap, and it started to come off, and it was just, I believe, staining from him not cleaning himself off after self-pleasure. And uh, and it doesn't sound like it was very pleasurable to him either. And I think he still does it, but not as bad. And he never does use the lube that we gave him, so I don't know. But every once in a while he'll have blood all over his fingers and his underwear, and I don't know what's what.

SHANNON CHAMBERLIN 29:30

Um, his newest thing is that he doesn't want to wear underwear, and I'm not quite sure why. Obviously, we don't really get that kind of communication from him, but it's a constant battle. He when he jumped out at me the other day in the hallway, he was naked, and so he calls this tickle pee. He used to say that before he began masturbating as much as he began masturbating. I'm sure that he was doing it before when he started using this term, and I don't know if I told you before, so I wanted you to know. I would ask him in Wisconsin, what's wrong, or you know, what do you want? What do you want? I want... and that's the prompt for him, and then he can just say, I want and a word, and that's how we communicate, how we communicated before he lost his skills and words. So I think that um I was asking him questions like that one day in Wisconsin, and he was tapping on his crotch over his pants really light and quickly, and he looked very uh bothered. And he would say, uh, tickle pee, tickle pee, tickle pee? And I was like, tickle pee? Do you do you have to pee? Yes, I have to pee. You know, it took us a while to understand what he was actually talking about. And so when all of this summer from hell behavior came, he began, you know, yelling, tickle pee!

SHANNON CHAMBERLIN 30:47

And finally one day we put it all together and realized that he was tickling his pee and not cleaning up the mess, and we never did address that part beforehand, I guess. So we had to try to like retrain him. Like, it's okay to tickle your pee in your room, but you also have to clean it. And he's like, What? You know, he hates cleaning up after himself for any reason. So that was a battle, and I think he's finally slowed down to where he can keep up with it. You know, he's never really gotten stained again. But I, as I was scrubbing his abdomen and telling him what it was, I was explaining to him again, to the best of my ability, that this is from when you tickle your pee. And it's okay, it's not bad. That's what comes out is supposed to come out, but it has to be cleaned up. It's a mess. You you can't leave it on your body and on everything and then just hide things in your room. You have to get it clean. Let me wash your clothes and stuff, you know. And I don't know if it got through to him or not. I really don't know. He all he ever says is, okay, okay, okay, if I can get that out of him.

SHANNON CHAMBERLIN 31:55

So I don't know, but I thought it was really weird. You know, once you realize what it is, and then you think about, you know, oh, Spider-Man, Spider-Man, Spider-Man, you're like, what? I mean, if that's what does it for you, fine. But I happen to know that he loves redheads. Um, he loves every redhead in every cartoon movie that he's ever seen. So I don't know why he wouldn't say, you know, Fiona or Ariel or something. I don't know why it has to be Spider-Man, but that's I guess the only word that he's ever said constantly, you know, ever since he could say something. His first time that he ever talked, he said 'to Indigity and Beyond', which is why we call him Digga, because he he gets excited and he says digga digga-digga digga digga digga. And so he said to indignity and beyond, and then ever since then it's been Spider-Man as a constant. A

SHANNON CHAMBERLIN 32:42

nd yes, he did get to meet Spider-Man one time and sling webs with him, so that was a cool part of his life that he would love to go back to. He tells us all the time that he wants to go back to Universal Studios.

SHANNON CHAMBERLIN 32:53

I don't really think I have a cute story to end this episode with. I apologize. If you have a cute story that you would like me to share with the rest of the families that listen to this, you're welcome to send it over to me in my email. Again, that's contact.parenting severe autism at gmail.com. Thank you so much for listening and sharing, and I'm sure that your child would say thank you for everything that you do for them. Hang in there. You're a superhero.