EP.80 How Much Vigilance Can One Parent Hold Parenting Severe Autism

We relive a brutal stretch of severe autism insomnia where bedtime turns into instant chaos and every tool we have becomes about safety and survival. We share the phrases and hacks that actually land with our son, plus the day his dysregulation spills into the neighborhood and changes how we think about vigilance. 

• using two to three word scripts for receptive language limits 
• “no touchy” as a low conflict boundary cue 
• “stay down” and “time for sleep” as bedtime anchors 
• the baby monitor breaking and switching to low tech communication 
• the sting of unsolicited advice about medication and barriers to care 
• hypervigilance after neighborhood access 
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Transcript

Welcome And Support The Show

SHANNON CHAMBERLIN 0:17

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. Please remember you can support my podcast by clicking the Buy Me a Coffee icon on your podcast player. And every little bit does help. I really appreciate your donations and thank you so much for listening and sharing all of my episodes. Looking back on one of the more violent times of the Summer from Hell, the very first summer that we were here in this new location, not new, just repeated. He grew up here up until the age of seven. When our son was little before I was in the picture, I remember hearing a story from my spouse that my spouse went outside. I think it was like probably October or November. It was kind of fall outside. And he went out to the car to get something out of the car. And when he came back, the boy was gone. He was just sitting there watching TV. And all my spouse did was go outside, come back in, and the kid's gone. He looked everywhere in this house for him. Upstairs, downstairs, bathroom. You know, two, three times he looked like, where is he? He was just a few seconds. So he starts running around the neighborhood looking for his son, and we have neighbors directly behind us that have been there since my spouse was a kid, and his best friends lived right there. They're the same people, but the friends are moved out and have their own families, but the parents still live there. They have known my spouse and this family forever. So he runs over there to see if they have seen his son. And they're like, Yeah, come on in. He was there. He had gotten into their cupboard already. He got himself a bag of Doritos, which he was allowed to eat back then, and he popped in a movie and he was just doing what he wanted to do over at their house, sitting there in his underwear. That means he's comfortable, and eating Doritos, watching a movie on the floor. I tell you that, to tell you this. Now we're back when he's, I think, age 17 and experiencing major hell. During this time, he actually was very difficult to put to sleep or to keep in bed or make calm at all. And he only responds usually to like two and three word phrases at the max. I don't know if I mentioned it before, but thank God for Emperor's New Groove. That movie had the phrase, no touchy. That has worked really well. I still use it. I think I just used it yesterday because I'm tired of him touching me. It's a very cute and relatable way for me to communicate with him that I don't want him to touch something without him taking it as negative instruction or perhaps as he has done something wrong. It just takes him back to that cute part of the movie, and you can pretty much tell him don't touch whatever anytime, as long as you say no touchy, no touchy, no touchy. And that's okay. So I used that a lot during this particular summer from hell. I also ended up using do not head for do not cover your head with your comforter because you are sweating. And another one that I just invented at this time was I would put him in the bed, and as soon as he would touch the pillow with his head, he would spring back up like it was hot. And there was just no way to get him to understand that it is time to sleep now, and you need to turn this motor off. So I would put my hand on his chest and say, stay down. I don't know why that worked. I mean, I cycled through many different versions of that, but he heard me say something at one time, and the way that he interpreted it was stay down, and he repeated that to me, and that's when I was like, okay, okay, so that's what he's going to understand. Hopefully he won't react negatively to it. And you have to say it really firmly to him to get him to understand, almost as if you're threatening him. But that's the only way he'll receive it. So he would get in the bed and I would hold him down and say, stay down, stay down. And he's like, okay. And he would really concentrate and close his eyes and furrow his brow like he was really concentrating on staying down. Otherwise, he would get right up and be on my heels chasing me through the house, chonging with his arms flapping, and that was not acceptable because you can't sleep if you're going to be all amped up all the time. Another thing that I noticed was that when he did go to camp, he was able to sleep, and it just it made me really sad because they have two days a week where they go to the water park, which is within walking distance from the camp. It's just the local town pool, but they have two water slides. Since that was always his favorite activity, we would make sure that he went to camp on Wednesday and Friday, no matter what, because he gets to go swimming. And then I was finding out that he was just sleeping on his towel or on a chair the entire time that he was at the pool. And yeah, that's because he's not sleeping at home. And I was happy that he was getting some rest, but also I was super sad because he wasn't taking advantage of his favorite activities. And I just couldn't make heads or tails of it. I don't know. How can you sleep outside in the sun with water and kids screaming? I mean, how how can you do that? But you can't sleep in your bed with no noise and darkness. And it wasn't no noise. It was like he could have the air conditioner running. It was very similar to his bedroom at our old house. He always had an air unit in his window. I don't know. But it was really sad and it definitely affected his behaviors. I don't know, honestly, how long he went with this insomnia. I believe it was probably, I don't know, between one and three years. I don't know. So he would get up in the middle of the night. Well, not even not even then. Like as soon as he I it was weird. He could you uh I don't know how to describe it. His bedroom is above our bedroom, because we're in the basement, okay? And we can hear when he's shaking in his bed or jumping or creaking the floor or talking or yelling or anything. And I don't know how well he can hear us, but it's not like we make a lot of noise when we're going to get in the bed. We're actually as quiet as possible because we don't want to wake him up. But every time without fail that my head would hit the pillow, whether I went to bed before his dad or after or at the same time, he would instantly jump out of bed. It sounded like he was jumping from a standing position in his bed onto the floor. It was so loud. And then he would just Frankenstein stomp all around the room and all around the house, and he would start screaming and yelling and doing all the things that I've already told you about. And it was like he didn't know the difference between day and night. Even though it was dark outside, he would just start the whole menu of craziness as soon as he would get out of bed, no matter what time it was. So at first we had that baby monitor in there with the video, and I could talk to him on that. And I tried not to because, as you know, it kind of freaked him out, and I didn't like him knowing the source of it, but it got so bad. I mean, I need to sleep because I have to take care of this psycho in the daytime. I have to be able to function. So I would speak to him on the intercom to quiet down or go to bed or it's time for sleeping. That's how you would say it. Time for sleep. That's what he would respond to. Go to bed, time for sleep. And you couldn't really speak in complete sentences to him because it was lost on him. He only had the capacity to listen to three words before he would start spazzing out again. So we had to be very choppy with our speech with him. And eventually he got so pissed off at having me speak to him through the monitor that he crushed the monitor. I found it in four different pieces upstairs one day. So then we start just having to yell from our bedroom. So my husband would cover my ears and yell. Because who wants to climb two rounds of stairs? You know, I mean, it just wakes you up. It is just, oh, it just sucked. So anyway, I ended up figuring out that if I just grab a hanger, I can outstretch my arm and tap, tap, tap on the ceiling in my room, and it would communicate to him that he better watch it, you know. And at first he started running down the stairs and coming to our room and just sweating and picking on his armpits and saying, What? But eventually he figured out that that meant stop what you're doing, go to bed or whatever, you know, just be quiet. I still keep the hanger next to the bed because sometimes I still have to do this. I just did it last week because he's just being ridiculous. That ended up being a pretty good method of communication. I also tried to just keep a spoon with me, like a big kitchen spoon, just to scare him. I mean, I don't know, you know, like just to get his imagination going. I would smack it on my hand and be like, err, you know. But this child is scared of nothing. And as you know, you probably have noticed with your own kid, they don't feel pain. Mine does not feel a lot of pain, so it's not like I'm gonna go chasing him down with a spoon the way moms did when I was a kid, but I used it as like a threat, you know, just to try to let him know that there is more beyond scolding, but he never did find out, you know. Anyway, um, one day, I can't remember if he had come home from camp and done this, or if this was a bright and early, hey, welcome to the world morning that he did this. All I remember is that I was chasing him to keep him out of whatever it was he was about to get into because he was raging and running. And I remember him going into the kitchen and he opened the refrigerator and the freezer. He looked like he had big plans for it, and then all of a sudden he just reached his arms in and grabbed as much stuff as he could out of the refrigerator and threw it on the floor. And then he runs out the door. I believe he ran out the back door and maybe out the gate. And I'm right on his heels, so I had to leave all the food or whatever it was that he threw on the floor, and I'm chasing him. He runs out of our yard through the side yard, through the backyard of those neighbors that I just told you about. He runs into their garage. Now their garage is like really nice. It's huge, it's big, it doesn't have any cars in there, it's more of a gathering area, it's got a nice bathroom. I mean, it's really nice. And they have a refrigerator in there. They have a bunch of grandkids, they always have freeze pops and ice creams for the kids, they have beer for the adults and probably, you know, Pepsi and stuff like that. And usually it's not an empty refrigerator. So he runs over to their refrigerator, opens up the freezer door. I mean, this was so methodical. It was like he planned it. He just opens up the freezer door, he grabs what he can while the door is open of the body of the refrigerator and rocks it. One, two, and then on the third pull, he pulled it all the way down. Smack! Both the refrigerator and the freezer doors were open when it fell, and the whole refrigerator just fell face first open onto their garage floor. I felt terrible. I know that they came outside because they heard me screaming. I was always screaming at him. And the reason I was always screaming at him when I was chasing him is because I was really hoping to get some help. I was hoping that someone would hear me screaming and see what was happening and like help me. Help me chase him down or help me hold stuff down so he can't ruin it. I just I needed help. I I couldn't do it on my own. So I was always screaming at him and letting other people know there is a problem. Here we come, you know. He ended up running again, and I didn't even get to help them put their refrigerator back together. I felt so bad. And I know our kids aren't average, um, but I still feel like a bad mom. I feel like, you know, my kid is running around the neighborhood terrorizing people, people that love him, and I can't keep him under control. And I feel I just I just feel terrible. Um, even now, you know, even though he he now he's 25, if he goes out somewhere and he just starts acting up more than usual, you know, if he's destructive or mean in any way, I just feel awful. And I know it's not really a reflection on us as parents because what he has is an illness, but I still feel really bad. So I think that while that was happening, I might have been calling my spouse because he was at work. And I usually would use the calling dad thing as like a beacon, you know, like I've always mentioned to teachers, you need to say, I'm gonna call your dad, and that would usually get him to straighten up. And I mean, I live by that. If I cannot get control of him, that's the first thing I'll say, and the first thing I will do is let him see me calling his dad, and I'll put it on speaker phone, just like I did when he choked me while I was driving him to camp. So I'm pretty sure I was calling his dad while I was chasing him down, but I think it was after he flipped the refrigerator over, and I don't know if my spouse came home to deal with him at that point or not, but somehow I got him back to the house unharmed. And I don't know, I don't I don't know. Um, I I tend to block things out when they're traumatic for me. So there are details missing, obviously, and I guess it's just because of that. But I remember getting him back to the house and walking through the house to catch my breath after whatever I did to secure him. I don't know what happened. Um, but I remember walking through and catching my breath, and the first thing I hear before I'm even settled is his grandfather saying, You guys need to get him on medication. You fucking think so? Really? I couldn't believe it. I'm like, you know, you have no fucking tact at all. You see what I'm sweating. I'm sweating. My clothes are falling off, and this that's what you have to say. You think I'm still trying to get him into doctors? I mean, that's a real sore spot for me at that point because I cannot get any cooperation in the medical field. And we've only been here probably like a month and a half at this point. So it really isn't taking all that long. It's just too long for our situation. And I got really mad about that for many different reasons. I mean, the last thing you want to hear is someone else telling you how to handle your kid and what to do for him, right? Because this is something we stress over every minute of the day that he is not requiring us to hold him down or keep him in the house or make sure he's not screwing things up for everyone. Anytime we have a quiet space to think and breathe, he's what we're thinking about. He is what we're breathing about. You know, we're we're constantly trying to figure out how to get a handle on this. And I think it's very insensitive of people to just blurt out what they think we need to do about our child. Obviously, he needs meds. We're not stupid and we're not neglectful. We are trying, we're playing the fucking game that they make us play out there. Nobody wants to help us. So anyway, that is the most damaging thing that he did because it was destruction of someone else's property. So that opened up a whole new world for me, realizing that, well shit, if he is comfortable with anyone, then that means I have to watch their house. Their house is an extension of my house in his mind. So talk about hypervigilance. Not only am I trying to make sure he's safe, but uh now I feel like I have to make sure everyone else is safe. And no, it's not my responsibility to make sure they lock their doors. But damn, oh, and that's another thing. He ran into their house. That's what happened. He ran into their house, ran through their house looking for stuff to destroy, ran back outside and down into the garage, and that's when he flipped the refrigerator. And after that, I don't know what happened. But see, it's all very foggy and choppy, but it's just so damn stressful. So after this, the destruction was able to be contained in just our area. I don't recall him running and ruining anyone else's belongings, but geez, I felt so terrible because their stuff is so nice over there, you know. You know how it is with older people when they have empty nest syndrome and they make everything really nice and quaint and clean, and I just felt terrible. And you know, the thing is that he knows almost everyone in this neighborhood because my spouse grew up here, and then his son grew up here until the age of seven or eight. So yeah, he's comfortable with almost everyone. In my mind, that means he will run to almost anyone's house at almost any time and see what he can destroy. He doesn't knock, he doesn't ring doorbells, he just helps himself. And so now I I felt like I was living in a different realm of terror once I saw him do what he did with the two refrigerators that day. We tried to ground him from camp, and I mean we don't really have recourse with him. You know, he's not afraid of anything, he doesn't like anything, and he doesn't listen to anything, and there's not much you can do about it if they're not gonna listen to you. I mean, what are you supposed to do? I don't know. Since this was a one-time incident, I didn't really know if I should try to remedy it. Like I'm always trying to solve everything immediately so it can't happen again. But I was pretty sure he was not gonna just do that to their house ever again. I needed to see a pattern before I spent more money and more effort and locking stuff down. I can't make them lock their stuff down. All we could think of and agree upon was to get another padlock and put it on the gate of the privacy fence. So that was our answer to that event. In my next episode, I'll tell you about some more stuff. Um, I think I have one scary thing that I actually talked about in one of my early episodes, so I'll just skim over it next time. And the rest of these stories are messed up, but they're they're also funny. So I'm very excited to start sharing those with you. Lately he has been dancing a lot, and he says boom boom boom boom boom boom boom boom boom boom boom and he bends his knees and bounces and swings his arms back and forth, and that's he says, I'm dancing, I'm dancing. Um now I think he's saying, Come dance with me. I'm always like, I'm cooking, I can't go ahead. He has this really scary sounding song that he is trying to sing, which is just sounds, and I ask him, Where is that from, or uh, who's that from is what he responds to. And he says camp. I I don't know the melody, but he sings something and then he goes E. And he sticks his hands out like a zombie. I don't know. I don't know what's going on there, but he really has good memories attached to it, so I allow him to keep doing it and I encourage it. He's been really into symphony orchestra music on TV because his dad has been making sure he listens to classical music when he's in the kitchen instead of allowing war and death to be on the television all the time around Jacob. He really likes heavy metal, our son does. Like he likes uh that song Let the Bodies Hit the Floor. He loves that. He loves all kinds of Metallica. Basically, if it comes from a movie or from a video he saw that made an impression on him, he likes it. And usually it's heavy metal. But now he also enjoys classical music, so he's very cultured now. I'm waiting for the skin stuff to arrive that I'm got him to convince him not to bite himself. So I will report on that soon. And soon when spring comes, he and I are going to redecorate his room. He has chosen a green and a blue that he really wants in his room, so I'll be posting pictures of that, hopefully. Maybe I can record it. I don't know. I don't have any real cute stories right now. He's been complaining that he doesn't feel good, and I just heard him get up, so I have run out of time again. What a surprise. Thank you again for listening. Please check my next episode when it comes out. Please remember you can always email me at contact.parenting severe autism at gmail.com. Hang in there. You're a superhero.