EP. 58 The Exorcist in Room Two: Our Journey Through Severe Autism's Nighttime Challenges

Shannon shares her experience stepping back from caregiving duties to focus on her mental health after 18 years of continuous care for her son with severe autism.

• Taking a temporary break in a camper near home to restore mental health after reaching burnout
• Applying for fiscal sponsorship to pursue the dream of creating supportive communities for families affected by severe autism
• Jacob demonstrating remembered turn-taking skills despite lack of formal therapy
• Discovering disturbing nighttime behaviors through a video monitor that explained Jacob's severe insomnia
• Using the monitor's intercom as an intervention until Jacob ultimately destroyed the equipment
• Planning to share personal breakthroughs that have helped with mental health struggles

Please feel free to contact me through email at contactparentingsevereautism@gmail.com, text fan mail at psabuzzsprout.com, or through the Parenting Severe Autism podcast Facebook page.

Chapters

• 0:00 Welcome and Blueprint Update
• 1:32 Taking a Break for Mental Health
• 3:28 Jacob Learning to Take Turns
• 6:00 Nighttime Monitor Reveals Disturbing Behavior
• 12:15 Looking Forward and Self-Care

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. Thanks for putting up with my last episode, my dream of the blueprint for families like mine. I really do believe that getting caregivers and those suffering from severe autism into nature will help everyone function better, and I really like the idea of small communities of people like us so that we can all learn about each other's kids. We already understand the delicate nature of things. We can teach each other things. We can look out for each other, give each other respite, and I really believe that it's something worth fighting for. So I have applied for fiscal sponsorship, which just enables me to receive donations without being a corporation or an LLC or a nonprofit, because those take too much time, effort and money to set up and I'm going with the fiscal sponsorship instead. So I do have an interview with a company for that. They really like what I'm putting out there and they got back to me within 24 hours. They said it would take them four weeks to get back to me. So I think we're looking good on that and now we'll get back to regular podcast programming.

Shannon Chamberlin: 1:32

I want to first say that I kind of ran away from my family. I am going back, but that thing with the father-in-law practically giving that house away to strangers, it really messed me up and I just I couldn't stand to be around anybody. And thankfully our son although he is running around like a psycho, he gets along with his dad pretty well right now. He still is doing some self-harm. But you know, there's really nothing I can do at this point with my mental state. I can't be of any assistance to my spouse. It really does take both of us, but I can't stand to be around anybody at this time. So the father-in-law was very gracious in loaning me his camper that he bought and doesn't use, and I'm out here at a local campground I'm only 10 minutes away from the house and I'm just trying to get some healing done and I've got to do this. I'm only 10 minutes away from the house and I'm just trying to get some healing done and I've got to do this. I was very unhelpful, you know. I was finding myself just - I wanted to wring necks! I was not able to absorb anything to help my spouse out, and so, whether I'm there or not, he's still not getting any help from me, so I hate to say it. Getting any help from me, so I hate to say it, but I had to leave and they're all being very kind and allowing me this time. You know, I've spent 18 years taking care of the family, taking care of our son and that house thing. It just broke me. So I'm out here trying to heal, but I'm still podcasting because it's super important to me.

Shannon Chamberlin: 3:04

Now, in the last episode, before I introduced my blueprint to you, we were talking about learning to take turns, I believe, and you know he Jacob used to get back reports from school when he was very young, from when they would be playing games in class or in therapy, and he was a very poor sport and sore loser. That was like the one thing that they would always write about. He got great, you know, jacob had a great day, but Jacob is terrible at losing and he's terrible at playing games because he doesn't want to lose and he was vicious, and so that was something that they worked on in therapy and, after a couple years of therapy in school, on how to play games with the possibility of losing and how to be okay with losing, and we tried to work on that at home as well when we found out because I mean, you know you're, you're gonna lose, you have to learn how. So we thought, well, that's good family time for us. When he was younger it was fine. You know, he actually overcame that. You know, I really wish he could have more therapy.

Shannon Chamberlin: 4:13

Just the other day he mentioned taking turns. Again, we were on a walk and I think that I was talking and he tried to talk and then he stopped without the cue of me saying I'm talking, it's not your turn, it's my turn. So he just stopped on his own and then when I got done talking, he said Jacob's turn, the best that he could. And I was so proud of him and I said yes, it's Jacob's turn. And then another time in the hallway he was doing oh, he was in the bathroom, and I said Jacob, is that you in the bathroom? And he said yes, I said okay, and then when he came out he said your turn.

Shannon Chamberlin: 4:51

You know, he doesn't get any therapy input and he doesn't get any education, he doesn't get any services at all. So when he pulls these things out of his memory bank, it's really nice. I mean, we do our best in everyday life. But I've mentioned before, there's just no time for us to therapy him and we're not therapists. It's quite a struggle, but I think that when he mentioned your turn and Jacob's turn, I think to me that's him indicating that he's ready to bring that back into rotation of learning to take turns or doing activities with the family that promote turn taking. So I always try to pay attention to the little things that he does bring up or bring into an activity, because that's my only indication that perhaps he's ready for us to use that as an interactive tool, you know.

Shannon Chamberlin: 5:50

Now I want to mention a couple of episodes ago I told you that I was going to post the video of the insomnia chapter of life when we got that video baby monitor. But you know what? I can't get the film, I can't get the video to play well enough once it's processed into the computer and then as a post. I don't know, it was recorded on a cell phone from the monitor screen and it's just not transferring very well. So I'm just going to tell you this was some exorcist shit that we were seeing. That's why I wanted to share it with you.

Shannon Chamberlin: 6:28

We finally got this monitor after who knows how long he wasn't sleeping and we put it in his room and he didn't know. I mean, he knew it was there but we didn't bring attention to it and he had all kinds of weird stuff in his room so he didn't seem to mind. It didn't have lights or anything that would attract his attention. In fact, it did have one light to indicate power and I covered it with electrical tape so that it didn't bother him and didn't draw attention to itself. So my spouse and I would go to bed long after we would put him to bed, probably an hour to two hours later. And it had sound and video. So we would just, you know, lay there. We put the screen facing down so it didn't light up our room and keep us from being able to sleep, but we would start hearing these weird noises and so we're like OK, you know, we were very afraid to look. It was quite an adventure just between us trying to see should we look? What are we, you know? And so we finally look at the screen for the first time and our eyes got wide as saucers. Our jaws hit the floor.

Shannon Chamberlin: 7:34

This child was laying flat on his back in his bed and then, out of nowhere, no sound indications, no little bitty wiggles or jumps or spazzy moves or anything, just out of nowhere. He would sit straight up in bed and his eyes were wide open and, with the infrared type of camera that sees in the dark, his eyes were glowing red and he would make this really scary face where he puts his tongue on the roof of his mouth, opens his jaw as wide as it'll go while his tongue is on the roof of his mouth, baring all of his teeth, and his eyes are just so big and his eyebrows are pointed and evil looking, and then he would just start flapping violently and shaking the entire room. And then he would just start flapping violently and shaking the entire room and we couldn't hear that in our room without this camera. We had no idea this was going on and this is what happened every single night for hours. We started getting up and you know we would go to his room First.

Shannon Chamberlin: 8:45

My spouse would get up and he would go around the corner and down to his room and go in there and try to calm him down. Hey man, you know you there and try to calm him down. Hey man, you know you need to go to sleep, buddy, let's, you know, and try to calm him down, and this went on and on and on, and then my spouse would fall asleep and the kid is still doing it and it's getting worse and worse and worse. So every single night now I am not sleeping, I'm up monitoring this child and trying to get him to calm down, and I'm tiptoeing down the hallway and going in there and trying to calm him down, and I could hear. As soon as I would leave, I would get down to the corner of the hall and he would start again and I could hear it. So I would go back and I ended up like stalking him in the dark in the hallway and just waiting for it to happen, because every time I'd get back in bed the monitor would go off and I'm like, you know, come on, man, so why get back in bed? I'm just going to stand here in the dark and wait until I hear him, and then I'm going to go in there and lay the law down. You know, and it never, ever worked.

Shannon Chamberlin: 9:40

I could not get him to calm down, His dad couldn't get, you know, so this was really having no effect on the insomnia itself. But I was trying to catch him and eventually, after I don't know how many weeks of dealing with it that way, I was just fed up. I mean, you know he would sit up and do that stuff and I swear his head would spin around. It was just scary and violent. I mean, of course you're not going to sleep and of course, with all that energy output, you're going to be exhausted. It doesn't make any sense. How can you live like this? And are you choosing this? Or is this just something that overcomes you? I don't know.

Shannon Chamberlin: 10:22

But eventually I used the intercom feature on the monitor and his dad was there. He was awake and I said I'm just going to press this button, I'm just going to do it because we were tired of getting up and down. And his dad's like, okay, go ahead, you know. And then I did. I pressed the button and I said, jacob, please go to sleep now. And it was like the voice of God came into his room and he just didn't know what to think of that. He's looking around from his bed like what, where's that at, you know, and we're just in our rooms laughing.

Shannon Chamberlin: 11:00

But his dad was scared to death after he saw Jacob hear me and start looking around. You know, you could just see it on his dad's face like, oh shit, now we really messed up. Eventually he stopped even listening to that. It did work for a while because it spooked him and he would just lay down real slow with his eyes real wide and then he would close them and pretend to sleep. But it helped and I think he was starting to get rest because he was a little bit freaked out by the whole thing. So I think he got a little bit of rest here and there by us doing that. But eventually he got pretty pissed off about that and he was like no, you're not going to control me, and it had no effect on him anymore. After I don't know probably another couple weeks of us doing that.

Shannon Chamberlin: 11:49

He did not destroy that, which really surprised me. We ended up taking it with us when we moved here and we had it set up in his room here for a little while and then, when he was in the destroy everything mode, he smashed the hell out of it multiple times and it doesn't work anymore. He dismantled it and just killed it over and over again. And I was upset because one, it was a really nice piece of equipment and it actually was pretty expensive. But two, I'm two flights down now. I'm two flights away from him and I can't understand what's going on. I don't. There's no way to monitor his behavior and once that monitor got broken, his behavior got even worse and we had no idea until we were there for the aftermath. So it really would have saved us probably a lot of drywall food throwing. You know, we could have gotten a jump on it if we had the monitor, but he made sure that we didn't.

Shannon Chamberlin: 12:51

This episode is going to be cut a little bit short because I'm a little discombobulated with moving my entire podcast office into the camper and unfortunately I don't even have my outro music for the end of the episode, so you won't hear that either. I really like that at the end and I'm sorry. I will bring it back as soon as possible. With my mental state and I have experienced three breakthroughs that have shown physically in just the last two weeks. It's really amazing. So I'm going to see if I can get you some extra information before I tell you about it, just in case you feel as desperate as I did and still do.

Shannon Chamberlin: 13:44

I want to share anything I can with you, as you know, from one parent and caregiver to another. Not all the episodes can be about the kids. Some of them have to be just about us, you know. So in my next episode I am going to mention that and give you the information relevant to the program. Now my plan is to review my last few podcasts and make sure I haven't missed anything as far as follow-ups, and I'm going to start filling you in on everything else, before and after he lost his skills and everything that started to happen. Because after he lost his skills and the devastation wore off for us, we started getting him extra help, and it wasn't a choice, it was just that the list that we were on finally got funded and that's where that monitor came from. So I will have a lot more information for you on that.

Shannon Chamberlin: 14:36

I just wanted to put this out there and let you know I'm still alive and I still care very much. I'm just doing a little bit of extra rehab on myself right now. Please feel free to contact me through email or text, and email is contact. parentingsevereautism@ gmailcom. You can leave me a text fan mail at psa, short for Parenting Severe Autism, psa. buzzsprout. com And I think that I'm receiving messages on Instant Messenger from Facebook on my Parenting Severe Autism podcast page so you can give that a shot as well. It's a little glitchy for me and I'm not always able to get the messages directly in time, but I welcome your feedback. I welcome your questions. I hope you had a good Mother's Day, and if your child was not able to wish you a happy Mother's Day, I'm sure that they would if they could, because look at you, kicking ass and everything! You hang in there. You're a superhero.