EP.32: Family Dynamics and Severe Autism A Tale of Love and Patience

As the sun sets on another April, we welcome a time of acceptance that extends far beyond a single month. Imagine shifting this conversation to the heart of summer, when the world is in full bloom, or perhaps as we turn the page to a new school year—moments ripe for the seeds of awareness to take root. Today, I'm going to share a lunar eclipse story, one that unveils the unexpected beauty and chaos of parenting a child with severe autism. It's a tale that might sound familiar to those who walk this path, a narrative that intertwines the challenges of the unexpected with the triumphs of communication breakthroughs.

Parenting a child with severe autism means embracing complexity in every facet of family life. From the mystery of an unusual dark spot to the heartwarming surprise of my son's first full sentences, this episode peels back the curtain on our intricate family dynamic. Hear how the need to collect belongings and a misadventure in the night turn into a moment of pure joy and connection. As I recount how autism has reshaped our routine, including a reduced work schedule to meet home needs, you'll be reminded that sometimes, the messiest moments lead to the greatest leaps forward.

The trek through autism parenting is an uncharted one, filled with day-to-day hurdles and the pivotal moments that test our resolve. Join me as I grapple with the home safety vigilance needed to protect my wandering son, and the delicate dance of balancing his routines with our own self-care, particularly in public spaces like the gym. We're preparing to dive deep into the heartache and hope, acknowledging the solidarity that holds us together. So, I invite you to lean in, share your stories, and find comfort in the shared journey of raising a child with severe autism.

Chapters

• 0:17 Parenting Severe Autism Podcast Episode
• 8:43 Understanding a Complex Family Dynamic
• 20:32 Raising a Child With Autism Challenges
• 29:35 Parenting Severe Autism Struggles

Transcript

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. It is April, Autism Acceptance Month now, I believe, and I am back. I believe that I am back to be posting regularly scheduled and posted episodes. To start out with, there is that company I mentioned before, AngelSense, and that's the tracking and monitoring service with the little thing that gets attached to the child's clothing. And for April, for Autism Acceptance Month, they're having a wonderful sale. So if you're not a customer there, you get a free unit and you just pay the monthly, which I believe is like $40. So the unit itself it was over $100 the last time I had to buy one. But if you could be so kind as to click my link, because it doesn't cost you any extra and it helps me earn a little money off of just being the one that recommended it to you, that would be awesome. Please listen to my episode on eloping if you would like to know more about the benefits we have received by just employing the AngelSense tracking and monitoring system and service, and then you can click my link. Go right over there during the month of April 2024 and get yourself one of those for free.

Shannon Chamberlin: 1:39

So you know, just to start off with April being autism, I thought it was autism awareness but now it's autism acceptance. Just. You know, I don't think April is the right month. I wish it would be more like June or July, because that's when things really seem to matter, at least for our family, you know, with you've got July 4th, so it would be really nice for people during the summer months to become aware of the things that happen over the summer, the things that they might do. That would affect kids like ours. And I think that it's also a great time for teachers and educators and therapists and anyone involved in the school system to begin understanding exactly what is going on with children who have severe autism that may be coming to their school for the first time, because the way that my child was treated in school was like you could just erase that autism off of him and he should fall in line with mainstream classes. And I just don't think that April is a great month to bring awareness to the sensitivity of these kids. I think it could be planned better. I think April is a stupid month for it to be. Who cares? You know who really cares in the month of April? Who does it really benefit? I think it would be much better if people had it in their face to accept autism when it's closer to the 4th of July and the start of school, or at least when teachers may be thinking about lesson plans and things like that.

Shannon Chamberlin: 3:18

Hey, recently there was a lunar eclipse and in a couple days there's gonna be a solar eclipse. But we had the weirdest experience - at least, I did. My spouse was sick and he was in bed for over a week, so I was doing all the momming and the dadding and during that time we also had this lunar eclipse. And so the night just in case you think that moon phases and moon poles and stuff like that don't have anything to do with our kids, check this out. The night of the lunar eclipse, everyone seemed to be sleeping fine.

Shannon Chamberlin: 3:54

I didn't get awakened for any reason. I woke up in the morning. It was like five o'clock. I went upstairs and I noticed that there was shit all over the bathroom. There was just shit everywhere. So there was shit all over the toilet seat, all over the side, like one particular side of the toilet seat, and it was the side closest to the tub, which made no sense. There's no room there. But I was thinking what did someone like scrape their ass on the side of the toilet? Is there? Did someone like scrape their ass on the side of the toilet? Is there? Are we out of toilet paper? No, everything was in order, but there is just shit everywhere all over the toilet, and it was so early that that's all I noticed was it was on the seat and I had to pee. So that's what I noticed.

Shannon Chamberlin: 4:37

Well, I cleaned the toilet seat off and it was caked on there. I mean, it took quite a while to get this thing clean. Finally, I get it clean and I see in the tub, right about where my son's butt would normally go and he was in the bath the night before there's a shit stain, a big circle of shit in the tub. And I'm like, oh my gosh, did he, did I miss this? Did he shit himself in the tub? And so now this is my wake up, right?

Shannon Chamberlin: 5:04

I'm trying to make sense of all these weird things. I start looking around and I see little shit smudges on the floor, on the tile in the bathroom, just here and there. Weird, weird pattern. I could not figure it out. So I'm cleaning this stuff up and couldn't really see because it's dark in the hall and everything.

Shannon Chamberlin: 5:22

But as time went on that morning I started to notice more and more things with shit on them. So I'm just beside myself, I don't know what is going on. So there's shit all over the toilet seat, all over the one side of the toilet seat. Got that cleaned up? Got the floor smudges cleaned up? Then I notice there's some shit in the hallway on the unfinished wood floor, just like when he was 17 and he dropped that big ball of shit in the bathroom and stomped it all over the floor.

Shannon Chamberlin: 5:58

So we're back to that and I'm thinking, well, this can't be my spouse, this has got to be my kid. I mean, it's got to be him and he's not up yet and I didn't want to go in there. I mean you know, you don't want to wake it until it's ready. So I'm just trying to figure everything out. I'm wiping down light switches and doorknobs and handrails and anything I can think of that might have this on there and it took me altogether about eight hours to put this together, okay?

Shannon Chamberlin: 6:25

So once my son woke up he came out and he seemed okay when I went in his room after he woke up. The smell was awful. I go in his room and I see that he has taken his blankets off of his bed and put them across the room on this huge pillow that I got him. That serves no purpose. And I tried to ask him what happened and he's like you know, jacob poop, jacob poop. And I'm like, okay, did you, did you put these blankets? Yes, yes, I put the blankets, or whatever he said, you know. And I'm like, oh, okay, so I immediately take those and put them in the washing machine. He won't sleep with a sheet on his bed, so there's nothing else to wash but his blankets and his pillow. He doesn't have anything on his body that I can see, but I was wondering why there's a perfect circle of shit stain in the tub. Over the course of eight hours I figured out what happened. So here's what happened.

Shannon Chamberlin: 7:20

I think I have seen him and I've probably complained about this in other episodes the way that he wipes himself. He takes the toilet paper, dips it down in the toilet water and then wipes his butt with it, and I cannot make him stop. He won't stop. It's what he does. It's horrifying, but that's what he does and I tried to make sure that he's at least flushing the toilet. But he's 23 and I am not monitoring his adult bowel movements. He goes when he goes and I don't even know. But I know what he does and it horrifies me. I can't get him to wash his hands properly. It's just a huge nightmare, okay. So anyway, knowing how he wipes his butt, I started to put it together.

Shannon Chamberlin: 8:05

I have also seen when he was masturbating into his underwear, which is another story. He used to take his underwear off and try to clean them in the toilet and if he ever made a mess anywhere that was from below the belt, I would catch him dipping his underwear in the toilet water, flushed toilet water and then trying to remedy the situation with freshly soaked underwear out of the toilet. I don't know why, I don't know. Okay, it's just what's going on in his head. So I realized he said he did poo and I.

Shannon Chamberlin: 8:43

I asked him to the best that we could communicate with each other. I asked him to show me what happened and it looked like there might have been an accident in his bed. His, his mattress top is brown velour and very difficult to see anything, but there was a large dark spot in the middle of the mattress and that's right where his butt lays and that's right where he is kind of breaking down the mattress with his conniptions that he throws in the bed. So it's very difficult to tell. And I got a fresh, clean cotton rag and blotted all over where this dark spot is and nothing came up. It wasn't wet, it wasn't brown, nothing came off of it at all. So I was very confused. He kept insisting that he pooped right there in the bed and it sure smelled like it, but there was no. I don't know, I couldn't tell. So anyway, here's the situation In my head. This is what happened.

Shannon Chamberlin: 9:51

He thought he was going to fart in the bed. He shit himself got up, possibly took his underwear off in his room or walked to the bathroom with his underwear on. Either way he ended up getting poop all the way down the hallway and on the bathroom floor. That could have happened while he was in the bathroom or you know whatever, but one way or another, during transit, he dropped some poo everywhere. He went to the bathroom, took his soiled underwear and began dipping them in the toilet, like he has done before for other reasons, and then he used the side of the toilet to kind of scrape them off and wring them out at the same time, like a washboard, if you will. And then he took the wet underwear to his room and applied the soaking wet underwear to his mattress and who knows how much toilet water went through his mattress at this point. But he attempted to clean his mattress with the wet, soiled underwear that he has washed out in the toilet.

Shannon Chamberlin: 10:52

Then, when he was done, he went back to the bathroom and threw the soiled underwear in the tub. That's what he always does in this house with his swimming trunks. He's supposed to hang them up, but he throws them in the tub. So I guess that makes sense, right? And then he somewhere removed the most of the blankets from his bed. He has three.

Shannon Chamberlin: 11:14

He took two of them off and then went to bed nude on a wet spot, I guess. To the best of my ability, that's what I can figure out. It is horrifying. I couldn't get rid of that smell for days and I there was nothing on the floor under the bed. No water had gone through it. I don't know, it's a big mystery, and the only thing I can think of is that it must have been some kind of energy from the full moon and eclipse.

Shannon Chamberlin: 11:45

That had happened, the lunar eclipse. He wasn't actually sick, he was just tired that morning because he had been up for hours dealing with this poo and then at some point he ran back in the bathroom and got those underwear out of the tub and put them in his room. He does that a lot. If he knows that some of his clothing is somewhere else in the house whether it's in the bathtub to dry, like his swimming trunks, or if it's like some socks, just anything If he has left anything in the house, he won't sleep all night. He will get up in the wee hours and he'll collect his stuff and he'll still obsess over it because it's not where he wants it to be, which is in my room in his laundry basket. I hated every minute of that.

Shannon Chamberlin: 12:31

There was also another development during the full moon and after the lunar eclipse or something like that. I don't know right around that time, but definitely after the lunar eclipse, he actually used a few different complete sentences and the one that stood out the most to me that I remember. Right now I wasn't in a position to write them down. Usually I write them down to share them with you. But the one that I remember is that he came down here and he said maybe just leave shoes downstairs. As you know, he doesn't get access to his shoes. So he had his shoes on, he took them off, put his slippers on, brought the shoes down here where he needs to put them, and said yeah, maybe just keep shoes downstairs. I said, yeah, okay, buddy, and he goes yeah, maybe just stay inside because it's too cold outside.

Shannon Chamberlin: 13:18

And I was so proud because he never makes a causal statement. So if he says he wants to do something and you say why, or he says he feels a certain way and you say why, if you ask him why anything, he'll just say because of, because of, because of, and then he'll say something like Superman or Spider-Man or Batman or something that has nothing to do with anything. Right? So he came up with that all by himself. I didn't even ask him why, but he made a complete sentence and it was a causal statement, which was great, and I don't know if I'm saying that correctly, but to me that's a correct way to say it. He's giving me the because to the why, and that was really cool. That's the first time ever that he has done that. So, yay, he had a lot of breakthroughs with speech that week. They haven't really been happening since, but I'm really the only one to work with him on his speech and insist that he tries to talk. So you know, if I'm not around and everyone else, just lets him do whatever and say whatever he wants, any way he wants to. Of course we're not going to keep the gains that we notice, right? So, speaking of that the influence from me and everyone else around I mentioned in my last episode that I may have to cut down on my work, and I did.

Shannon Chamberlin: 14:33

I went down from three days a week to two days a week, largely because of the autism. So the first two weeks of that adjustment of just me being home one extra day was absolute hell. Our son was very upset and we didn't really talk about it. I, you know I forgot to mention to him that I was going to be around a whole extra day and he was pretty pissed off about it. But after that is when I started noticing the speech improvements and yeah, it was also around the full moon and everything.

Shannon Chamberlin: 15:07

Who knows if it's me or the moon, but I have been a little more involved, just by one extra day home a week. So I'm actually home five days a week, but I have a lot of other things going on. I'm trying to make money for our family and I'm not involved with him constantly like I used to be for our family and I'm not involved with him constantly like I used to be. So, anyway, I did cut down because my spouse, you know he just can't seem to hold it together like I can. I have been taking care of this child almost every night of the week and lots of the afternoons when school's not in session, and I always do the cooking in the morning. I mean ever since he was about eight years old.

Shannon Chamberlin: 15:45

Over the last five years I've been, of course, the one working outside the home and his dad is the paid caregiver and everything is different. But his dad just can't handle things the way I do and I just I'm tired of him being so miserable. That's my spouse now. I'm tired of him being so miserable and always saying that he is, you know, a slave. And I mean we are, we both feel that way and it sucks, but he's miserable. He's much more miserable, I think, than I was, at least verbally. You know, maybe I didn't complain as much. I still had a lot of other things going on, but I just can hold it together better. You know I can multitask better. I get stuff done better. I'm not a slave to the cooking. He insists on just doing the slave cooking all the time and I, just I, I. I hate the way things are going and I want to be around more. Everything is a fucking fit and I can't take it. So I'm home from work now a little bit more.

Shannon Chamberlin: 16:47

So if you're out there and you're wondering why you guys are not getting along, it's most likely because the autism has made you extremely unhappy and you don't get to live for yourself. You still have to live for the person who can't function because of the autism and you have to do everything. If you have to do it for yourself, then you also have to do it of the autism and you have to do everything. If you have to do it for yourself, then you also have to do it for your child, and when your child is a full-grown adult, the needs are greater. You would think that the adult could just function, but he can't, you know. So everything sucks and we're trying really hard, he does still get to go to camp. I do feel that his anxiety could be reduced more, which would require another med adjustment, and we just don't want to mess with the meds.

Shannon Chamberlin: 17:34

You know, I've seen some really bad stuff. And then New York had a very strong earthquake and when I came home from work, this is supposed to be because of the lunar pull causing such a shift that it's causing earthquakes. I don't know if you've seen this, but when I got home from work the boy's energy was off the charts, intense and angry, and he was giving me the angry, ugly face constantly and he knew it and I would tell him stop it and he would go oh you know, and try to fix it. But he was. I mean, you could just see it all over him. He just wants to be a destructive asshole and he is looking for a reason and a target. So that sucks and we can thank the upcoming solar eclipse for that. You know, with the moon shifting everything around and it really does make a difference for our son Maybe not yours, but it really really sucks.

Shannon Chamberlin: 18:32

We did get to get away, me and my spouse, for three nights last week. We left our son with his grandfather in this house and we did allow him to have access to our little apartment downstairs so he could watch TV by himself and stuff like that. And I made sure that his grandpa knew to make him take a break every once in a while and get him out of the apartment and get him back upstairs and maybe take him for a walk, give him a bath, do something. And who knows if that happened or not, the bathtub did not get used the entire time we were gone. So there's that.

Shannon Chamberlin: 19:07

But when I did get home I had already divvied up his cannabis and his regular meds and put them in these little pill boxes and asked his grandfather to lock them up. And there was one cannabis gummy left in this container and I was getting ready to hide it before we left and I thought, eh, you know, screw it. If he wants to eat an extra gummy, then let him eat an extra gummy. I don't care, you know, and I don't know, it was kind of just a little test and I know it won't hurt him and he, you know, all he's going to do is go to sleep or get real giggly. So when I got home there had been a box of muffins I was saving for him, that entire box was gone and that's the brand is Bobo's, b-o-b-o-s, I think, and they're gluten free and they're delicious. The apple ones are the ones that we use really good and it makes him happy to have something new. So if you ever catch those on sale they're worth it. So anyway, that box of muffins was completely gone and sitting right on top of my garbage. So you know he wasn't trying to hide it or anything. And then that medicine gummy was also gone and I was a little bit shocked and my spouse and I talked about it, just mentioning that you know it's just a reminder of how dependent he is and how we still really have to watch everything, because he can open anything except like a safe. He can't do combinations, but you know he can open anything else and you know you just have to watch it.

Shannon Chamberlin: 20:32

And there is another thing I had to have a discussion with the grandfather again not too long ago because, as you know, our doors are padlocked from the inside during certain times of flight risk and we always keep the front door padlocked at night because of the things that had happened in the past. So the grandfather has been leaving that padlock. He'll put it together, but he won't lock it. And I mean, there's quite a difference. You can tell when it's locked and when it's not. I don't care how well you line it up, there's a big difference. And I've been asking him and asking him, and I haven't. I have to lock it every single night. Grandfather will go to bed and leave that thing unlocked and I have to go and lock it. And finally I went and I told him. I locked it right in front of him and I said you need to lock this lock every night because Jacob is not stupid and I am so tired of him being treated like he is stupid. I told him he's not stupid and if he gets pissed off and he decides he wants to run, he knows exactly where to go. He can get out that door, just like.

Shannon Chamberlin: 21:36

A few weeks before that, my son was in the garage when he shouldn't have been. It was way too cold for him to be in there and he was trying to hang out and watch the TV in there and the door is supposed to be locked and I said what the fuck are you letting my kid in the garage? For? Oh well, I didn't let him in there, but he's in there and no one else opened the door, you know. And he says oh well, he must have figured out how to open the lock. And I had to remind him again. He is not fucking stupid, he has autism. He's not stupid, he knows how to work stuff. It just I'm so sick of it. You know, there are so many things that I need to worry about, and the last thing I should have to worry about is how his relatives, who live with him and see him all day, every day day, think he is fucking stupid. When you take it for granted that someone is just dumb, you know, you're not careful anymore, you start leaving shit where it shouldn't be. You start opening the door for opportunities for that person to be put in danger, and this is Probably one of the hardest lessons that I have to teach people and no one wants to learn this lesson that my child is not stupid. So how about that? Oh, my son and my spouse are no longer allowed to go to the gym with me. This ever really try to say anything tactfully, as you know. So I'm just going to tell you this quick little story.

Shannon Chamberlin: 23:07

When we go to the gym, daddy walks around the track with me. I then go and lift weights. My thing is keep the child at an acceptable vocal level and when you're in a large gymnasium those sounds echo terribly. In a large gymnasium those sounds echo terribly. Now, for me, certain sounds that he makes are triggers for my PTSD that I've developed from the way he has been attacking me for years, and I can't have that when I'm lifting heavy weight by myself with no spotter at the gym. So when I take the child out in public I let him know inside voices, let's be quiet, we don't make that noise in here, things like that. And all of a sudden he's like oh okay, I understand why Because I've raised him for all these years to be respectful of other people and use his outside voice in an outside space. But when I am lifting these heavy weights and he starts making these heavy, heavy noises, they distract me and I have gotten hurt every single time. I am not trying to get hurt at the gym and all I need is for him to control himself, and the only way for him to know to do that is for the other parent who's watching him to say hey, let's not use that voice in here. Inside voices, we don't make that noise here, wait until we get home All of the regular cues that he is used to receiving.

Shannon Chamberlin: 24:34

And this last time I left the weight room, walked over to where dad was playing on his phone and talking to some stranger and letting the kid do whatever the hell he wanted, and I said this is way too loud, I need you to control it. And I went back to the weight room and he made no effort to control that noise. When we left I told him look, I don't want you to come to the gym with me anymore. And he got mad. We had a huge fight and he says oh, okay, sure, I'll just tell my son you can't be autistic here and you know that's not fair. That's not fair because I know from experience and from raising the child that all you have to do is ask him to be good. He was in a good mood, he just needed to be redirected. And it's not fair to tell a person who is negatively affected psychologically and getting hurt physically because of it that they're being an asshole.

Shannon Chamberlin: 25:26

Nobody likes those sounds. Nobody likes those sounds. Just because they come with the territory of having severe autism doesn't mean it's okay. All the time he can't regulate himself. He relies on us to give him his cues. He can't pick up on that by himself and he knows where his inside voice is supposed to be used and where his outside voice is supposed to be used. But he will always push the limit until you tell him to do otherwise, because mentally he is five.

Shannon Chamberlin: 26:02

Life is stressful for us right now. I can't seem to stop fighting for my right to exist. I've always fought for my child's right to exist, but now I have to fight for my peace and my freedom. Because the other parent doesn't want to ruffle the kid's feathers. He doesn't want to make things worse in the moment. But let me tell you something If that's the way that we all functioned, everything is made worse later. You have to deal with what is going on in the moment and you have to find a creative, non-destructive way to deal with it. The kid needs guidance.

Shannon Chamberlin: 26:42

We used to make fun of my brother-in-law, who has passed. He used to say about his girlfriend's children that you know, these kids need structure. They need structure and my spouse thought that was just really funny and I, you know, I didn't think anything of it one way or the other, but we used to laugh about how my spouse thought that was really funny. And you know, the truth is our child needs structure and he relies on us to give it to him. There is no one else in his life. He doesn't have counselors, he doesn't have teachers, he doesn't have therapists, it's just us. And if we don't provide him with that structure and rules and expectations, he's just feral and it's not okay because he can't do or think for himself. It's different if you're just an independent person and you want to act feral, but he is not independent and it's not okay to let him be feral. It's a full-time job and then some to keep this child alive.

Shannon Chamberlin: 27:43

I noticed when he got a little bit sick recently and you know what, that also happened on a full moon he got the pukes. Yeah, he got the pukes during a full moon. This recent moon cycle has been really crazy, and not all at once, he wasn't sick like the whole time, he just I don't know, but he got the pukes all over the place and I realized that you know, geez man, I got to teach him everything. I have to remind him every year how to cough, how to blow his nose. I recently had to remind him how to drink water. Every day for a week I had to remind him how to drink water without drowning. I have to teach him how to throw up. He will just let it fly with no target and it's just everywhere. And I, you know, come on, man, I mean you don't learn anything. You don't remember anything from the other few times in your life that you have thrown up. You don't remember that you need a target, like a bowl or something. You just really you're just going to let it fly and hit everything in your path. You're not even going to try.

Shannon Chamberlin: 28:46

You know, I'm still trying to teach him how to wash his hands. This is a daily thing. He had been touching me on my head for a couple months and I've been wondering why is my hair just getting so dirty so fast? It's just greasy all the time. Well, he ate pizza a couple of weeks ago and he came down and his fingers looked really shiny and I was like, did you wash your hands? And of course he says my hands are dry. Well, that's not the answer and it never is, and he always gives it and I let it slide. But that day I said let me see your hands and I took a paper towel and wiped his hands and all this orange grease came off of his fingers and I was like that's why you have been putting your food in my hair, damn man. So I mean, it's just everything. Everything you know, I'm having a really hard time with this.

Shannon Chamberlin: 29:35

I want to tell you guys about when things started to go downhill for us. I guess I'll have to wait till my next episode because I just keep getting hit with new stuff and I want to go back for you guys. I want you to know what has happened in the past and how we've come to this point and all the things that maybe you can look out for, and I'm just constantly held up with the new stuff that's developing. So, anyhow, in my next episode we will talk about when things started to change for the worse. I'm kind of wondering, you know, is it our fault or is it the autism? So that's my next episode, still working on getting dad nailed down to get a dad's perspective episode. Remember to send me your questions for dad. If you have any questions for dad, send them to my email, that's contactparentingsevereautism at gmailcom. And remember you can buy me a coffee on my Buzzsprout channel.

Shannon Chamberlin: 30:31

I think you can do it from any of the hosting channels, wherever you find this podcast. I think there's a little coin thing you can click if you wanted to help support the podcast. But I'm just happy that you found my podcast. Thank you for all the downloads. I've got just over 120 downloads on most of my episodes and that is just amazing. Every time I get a new follower on my Facebook page or podcast itself, it's a bittersweet thing. I'm happy that someone else found me, and then I'm just sad that someone else had to find me, found me, and then I'm just sad that someone else had to find me. This life is hard, you guys. We just have to keep believing that right around the corner there is going to be some kind of help, some kind of relief. And if you watch the other parents in the Facebook groups, if you're on any of those groups, you know you do see once in a while that something nice happens for families like ours. You hang in there, you're a superhero.