EP 72: Bathroom Battles And A Glimmer Of Hope

We share a hard summer of bathroom destruction, broken trust with family, and a support group that didn’t get it, then find relief in small wins: a playful de‑escalation, emerging words, and happy tears that we learned to name. 

• family boundary breaches and safety risks
• obsessive bathroom behaviors and home damage
• product lockdowns and supervision trade‑offs
• safe medical sedation tip for procedures
• a simple co‑regulation trick that worked
• signs of speech returning after regression
• nervous system healing and calmer dynamics
• happy tears, labeling emotions, gentle support
• holiday stress, criticism, and emotional armor

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Chapters

• 0:00 Welcome, Thanks, And Support Links
• 1:52 Losing Faith In Local Support
• 3:08 Family Boundaries And Broken Trust
• 6:27 Bathroom Obsessions Take Over
• 10:36 Sink, Soap, And Toilet Paper Chaos
• 14:04 Water Damage And Endless Vigilance
• 16:05 Medical Sedation Tip For Procedures
• 17:25 Locking Down Hygiene And Access
• 20:08 A Simple Belly Tap De‑escalation
• 22:05 Ten Years Post‑Regression, Words Return
• 24:03 Nervous System Work And Reflections

Transcript

Speaker 1: 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. I have heard from so many new listeners this past week and a half, and I'm just so grateful to you guys for reaching out. Special thanks to Becca. It was really fun to hear from you. Thank you guys for reaching out. Thank you for sharing my episodes. Thank you for your donations. I do appreciate it. Every little bit helps with that Buy Me a Coffee program. And you can also become a member and have access to some of the private locked episodes that I'm creating. You might do that a little bit down the road. I've created more than I've actually released, and I'm just working on that. So remember, check my show notes so that you can find links to products that have worked for our family, especially for eloping and protection of home items and things like that. I do get a little commission off of those things if you click my links. So I would appreciate that if you need them. And I also have a little store with my podcast logo and the reminder that you're a superhero on all of my products that are available, so you can click that as well. And please remember to share this podcast. If you also would like to share information or just share the link to my GoFundMe for our safer lifestyles blueprint for respite communities for families like yours and mine, that would be amazing as well. You can always contact me at contact.parentingsevereautism at gmail.com or any of the other messaging methods that are available. And most importantly, keep listening, keep hanging in there, and keep sharing.

Speaker 1: 1:52

Today, as I was preparing to deliver this episode of destruction from the worst summer in family history for us, I was reminded of a couple of things that also happened during this exact time. I know that I mentioned before that we removed ourselves from that parent support group that we found locally here, but not before this little story happened. During the same time of all this destruction I'm getting ready to tell you about and all the future episodes of destruction, I mean it was all in one summer. We also were desperately clinging to this parent support group for support and sanity, and we were dealing with this um basically abuse from our son onto us and all of our belongings at home, attempting to meet and commiserate with other parents who were supposedly in our situation. We get there one night and this woman is complaining about how nervous she is that her son, who drives himself to college here locally, has autism, allegedly, and uh she's nervous because he's driving and also getting ready to have a girlfriend. What? Yeah, it's like once you hear these stories of destruction, if you have not experienced it already, you will, I have no doubt in my mind that this will be a part of your life. Und m a then it's just like getting kicked in the head right in the teeth, you know, when you go try to get support from people who have no fucking clue what you're going through. And they I don't know, it's so hard going out there and talking to parents who who think that their kids have issues and you know, and then they judge us for trying to enhance our child's life through herbal medicine. It's just ridiculous.

Speaker 1: 3:41

Anyway, this is also the same summer that we got together with his half-sister who has kids and her little guy who what? I don't know, he was like three or four, probably four, was eating at his own birthday party with a fork. While my adult child, well, he's like 17, I think, maybe 18, is just smushing all of his chicken breast and stuff in between his fingers and shoving whole handfuls of food into his big mouth with his big hand and all over the place. And this little guy over here is just perfectly eating with his little perfect fork. I was really amazed because I hadn't seen any other children besides mine for many years function, like do things like eat or wash your hands or anything like that. And I was just staring at this little kid in amazement and exclaiming out loud to my spouse, Wow, look at him eat. Look at him using his fork. That's amazing. My child does now use the fork a little bit more, uh, so that's a good thing, an upgrade there with him. So, first, the thing with the grandmother taking our son out to her friend's house to go swimming and feeding him a bunch of crap that he's not supposed to eat, as I mentioned in my last episode. Well, she did it again during this summer. I mean, we were just flabbergasted to be honest. Like, what really? Um, but this time it wasn't all of the foods. It was just, oops, he slipped and fell into a bag of Doritos. Ha ha ha, sorry. And we were just pissed.

Speaker 1: 5:04

What else did she do? She got together with the half-sister and our son, and we thought we could trust them. And they took him to see his actual mother. Yes, that's a problem. One, she has not been any part of his life, not even trying to call him or connect with him in any way. She has a very unsafe, chosen lifestyle. And above all else, all she does is break his heart every time she sees him. And they just took him over there, lying to us, telling us they were taking him to the park or something, and we found out, yeah, they did it again. So we had to draw the hard lines and have a serious talk with the grandmother. And she got to the point after all of these things I just told you while we were addressing them, she says to my spouse, Don't you get tired of correcting me? And he says, Oh, yeah, yes. I do. So we're starting to realize at this point that we do not have a village in the grandmother, as I had first thought, as I was very excited about. And now we're starting to feel that we have to guard our little family unit from the immediate family. They are not the helpful women that we thought they would be. They are not the supportive family members that they said they were. And we always are finding out the hard way.

Speaker 1: 6:22

And in addition to that, our son has a new target for his destruction. It's the bathroom. Incessant flushing of the toilet while running, stomping, yelling, not listening, and not cooperating. He would just come and yell in our faces, no words. He, of course, he lost his words a couple years before, and just yelling and then running away up the stairs to flush the toilet and then come right back. Or he would flush the toilet, turn on the sink, get his hands wet, and then run right back, just not even drying his hands. He's just wet and just constantly flushing this stupid toilet. I mean, constantly. It's still filling up, and he's running back up there to flush the stupid toilet. And this went on for weeks, if not months. Not only is he obsessed with flushing this toilet, he's also destroying all the bars of soap, just picking at them, and and destroying them the best he can. You know that he already had been shoving them down the sinks at our house. Well, now he's just picking at them and destroying them, mushing them and picking them and just leaving such a mess everywhere. I just couldn't understand it. He's also, at this point, dismantling the toilet paper holder thing. It's one of the floor standing ones. So he's got this obsession with running up into the bathroom when no one's looking and completely dismantling the floor standing toilet paper holder. And then I would find whole rolls of toilet paper soaking wet in the garbage. I think he was dunking them in the toilet and then putting them in the garbage, or I would find them soaking wet, half soaking wet in the bathtub. Um, or once in a while I would find them sitting in the toilet bowl, and then he would perfectly and neatly place the spindle that holds the toilet paper roll perfectly straight on the floor, lined up with the toilet paper holder itself. I don't know. Just the weirdest stuff that he would just start doing and just hyper-focused on all of this craziness. And sometimes in the middle of the night, he would flip the toilet paper roll over. I don't know. You would just find it. It would either be completely dismantled in the morning, or if you had to get up in the night to go to the bathroom, or it would be just flipped around so that it's backwards, you know, how everyone has their own way of doing toilet paper. Well, he liked to spin it around, just nothing that we wanted was okay with him. He had to completely dismantle and reverse everything that we had in place, the way that we wanted to live. He said, No way.

Speaker 1: 8:49

The sun rises right into the bathroom window and it's blinding, right? So it's summer, it's super bright, super early. And I would always keep the shower curtain closed to filter that light. And if he heard me close the shower curtain, he would get up as soon as I was out of sight and run over to the bathroom and take both hands from either end of the shower curtain and just whoosh close it to the center so the curtain was actually open and letting all the light through to blind everybody. And every single time, like no matter what we had set up, he would instantly go and reverse it. And it pissed me off so bad. And he was not even approachable. You couldn't get near him. He was like, he was so feral. He was obsessed with changing everything. Then he starts to focus on the pedestal sink. Back when we were successful in our business, we spent a pretty penny on remodeling stuff for this bathroom. We didn't live here, we weren't able to do it, but we purchased the materials and got it all lined up. And the bathroom, I mean, it really needed a lot of help. And we bought really nice tiles and all that stuff. And somebody, a lot of people, participated in getting it tiled and grouted and all that stuff. And the sink that we bought was a pedestal sink. It's like a pedestal, and then the bowl of the sink is separate and it gets kind of sealed onto the pedestal somehow, and then the back of the sink is grouted into the tile. Well, he starts leaning on it with both hands to get to the mirror that's behind it on the wall. And he's just gotta get real close to that mirror. Sometimes you would catch him smooshing his whole face onto the mirror, and other times he would just be making the ugliest, scariest faces that he could as close to the mirror as he could, and all of his weight is going on the stupid sink bowl. And eventually, between that and him just holding onto it and shaking it with all of his anger, one day it popped out of the grout, and now it's not even attached to the wall. And then shortly after that, the bowl becomes detached from the pedestal. Of course, he doesn't point this out to us. Not you know, you just figure it out when you accidentally bump the sink to open up the medicine cabinet, and all of a sudden the whole thing is rocking. Just total destruction. We moved here on April 27th of that year, and this all was going on before July even came. This is one to two months, tops. This had all happened already. And he's not really even allowed near mirrors because back when he was, I don't know, like four or five, he stepped into a full-length floor mirror. So he's not really allowed near mirrors because he just doesn't get it, you know? And it's scary, and we'd rather him just not be allowed to access them than find out what's gonna happen and does he understand how mirrors work and that you can't get in there. It's just it's too much. And then he starts this huge plunging during bathtime. Like when I mentioned about him coming to the tennis courts with us and doing that big bellowing roar while he slammed the basketball down on the court just to make it fly up in the air really high. He was doing that with himself in the tub. I mean, water is just raining down here in the basement in our living area because the bathroom is right there. And it was just a nightmare. Every minute of that summer was a fucking nightmare. And this is not all. It gets even worse. Wait until the next episode. I mean, you will not believe it. Some of it is funny though. It's awful, but funny.

Speaker 1: 12:22

So yeah, I just remembered if any of you guys have the younger kids, he was going through some testing. I don't know what, because I was not around yet, but they had to draw his blood, I believe, or give him shots. I cannot remember, but he needed to be knocked out. And they gave him a shot to knock him out, and they explained to his dad that he's gonna go to sleep right away, but then he's gonna wake up like it never happened. So that's a thing that exists. And this was, you know, 20 something years ago now. But in case you're worried about your child having to get stuck with needles or tested or doing anything where it's dangerous for them to be awake, then definitely inquire about things like that. Because when they went to wake him up, he woke up and he was just chipper and wide awake like nothing ever happened. It scared his dad to watch him just fall asleep like that and come back. It was really strange, but it's what had to be done to keep him safe. So I just wanted to throw that in there for you in case you're going through anything and you're nervous.

Speaker 1: 13:25

So there wasn't much we could do to stop any of these behaviors in the bathroom. We locked up the hand soap. We used the bars of soap. Actually, his grandfather likes to use dove bar soap, and we like to use unscented, clean pump liquid soap, but that obviously hadn't been working because he had already figured out how to empty and overuse all of the products. I mean, the more destructive he was, the more dependent he became on us because he would get all the toothpaste out in one shot. The entire tube of toothpaste goes everywhere. This is like uh almost a ten dollar tube of toothpaste gone in one minute because we tried to trust him to just put a little bit on his toothbrush. Same thing with shampoo, as you know, he dyed his head blue with using that full body soap and all three in one or whatever. So liquid soaps and cleaners for personal hygiene were completely incompatible with him. So we were trying to keep a little bar of soap around for him to have access to wash his hands. Now all of a sudden, we have to lock it up. So so now he can't brush his teeth without us, he can't wash his hands without us, which means he pretty much can't go to the bathroom without us because we want him to wash his hands. It's absolutely ridiculous. He can't wash his hair without us, he can't, you know, there's nothing that this kid can do without supervision. Damn, right? You know, we thought about, well, lock the bathroom door, but that's no good. That doesn't do anybody any good. He's got to have access to the bathroom. It's a no-win situation. He's gonna destroy everything, and we have to give him access. Yeah, you can turn the water off, but that wasn't the problem. He was trying to destroy everything. He would sometimes pull on that shower curtain so hard it would pull the whole uh rod down. I mean, just uh everything. You're trying to cook him food and you hear a big crash in the bathroom, you gotta run up there, you know, hopefully everything's okay.

Speaker 1: 15:18

Yeah, so that's enough destruction for one episode, I think. I do have a cute story and kind of a motivational story.

Speaker 1: 15:26

Today is one week since I came back to the house after leaving the campground. And our son was with us while we were getting the camper fleshed out and ready, and he was great. He was actually in a really bad mood after he woke up from his little nap in the camper while we were doing the maintenance on it at the campground. And I got him outside because we were getting ready to wrap up and bring it home, and he was just really pissy. And I got him to follow me over to the side where his dad was and stand up on the this pedestal where there was like a generator or something, and he was just really threatening to have a little meltdown. So I took my hand, and I don't know what possessed me to do this, but I went right above his belly button and I just lightly tapped it and I went. And it worked. It made him smile, it stunned him a little bit, and he was like, I don't know, it looked like he was tripping on something. Like he he didn't know how to handle that, and he loved it, so I just kept doing it, and then he kept doing it to himself, and it instantly turned the whole thing around. I was really impressed because I thought everybody was getting ready to be in a bad mood because of what he was getting ready to do and how he was getting ready to act. I've done that several times over this past week. Anytime that I see him getting a little bit shitty with me or with anyone, and it works. It's amazing. So I first want to mention that we are about one and a half months shy of 10 years since he lost all his words and all his skills. Because he's 24 right now, and that happened within a week after he turned 15. And he does have more words, and some skills seem to want to come back. Um, it's kind of a thing of will at this moment with his skills. But I've noticed a lot of big boy improvements since I've been home. And I don't know if he I don't know. Like maybe he's doing it to uh I don't know, like a job security thing. Like maybe he thinks I left because of that. I don't know. I don't know. All you can do is speculate, but um, it just seems like ever since I've been back, he's been trying occasionally to form his words and use words that I have not heard him use. That started actually at the campground the day that we were packing up. It's just stuff that his dad says, because he'll say stuff like very well. And uh Jacob is starting to use the words very well, but he's forming sentences, and I'm just impressed. I'm just knocked off my feet every time he does it because it seems like there's no reason for him to do it. And I'm just like, wow, good talking. I'm really impressed. So I guess that um I'm just trying to say that yes, it's been almost 10 full years, but he's not as bad as he was 10 years ago, having lost his speech and skills and all that stuff. And you know that he has not had a lot of access to therapy in any fashion since he was like 19. Nobody is interested in helping him. It's just us and him and his his decisions to step up a little bit. I know he's got more in him than what he gives us. And I think that, I don't know, maybe he's trying to show me that he has it. I don't know. I'm not sure, but it seems to be getting better. So there's just a little bit of hope out there for you.

Speaker 1: 18:50

I wanted to mention really quickly, several episodes ago, I mentioned this nervous system healing program that I was going through and how the AI part of it suggested that kids like ours are given to the parents as mirrors to show them what they need to work on. And I know that might be very controversial, but that's what I do. I just want to say that I worked for seven months on healing my nervous system. And I am back in the house now. I've been here for a week, and my emotional landscape is healthier. I'm not harboring the fear that I had of losing the business or the fear of getting stabbed in the neck by my son, the feeling of scarcity that comes with the fear of losing your business and fear of having to leave your home and go to a place that you don't want to be. All of that has been purged from me. I am no longer harboring resentment, and I am feeling super healthy emotionally, and I plan for it to continue. Um, I'm not gonna mention that program, and if you want to know why or you want to know more about that, you're welcome to become a subscriber. I've got episodes that will be lot for members only, but I wanted to say that he is still doing his negative stuff, but I think I'm noticing improvements, and I feel it may be in response to my own personal improvements. So, as controversial as it might seem that our children with these disabilities mirror back to us what we need to work on, I'm seeing results. I'm seeing a difference in my child. And it could just be a honeymoon phase, I don't know, but I do think that he's calming easier, acting better, and we're getting along really well. He seems to want to hang out with me. I'm not as scary, even though you know I developed all that scary stuff because he was scary and I needed to be scarier, so now we're not scary to each other, I guess.

Speaker 1: 20:46

Here's the way it started. This is the cute story I have for you this week. Last Saturday, when I got back, we all went to bed. We woke up Sunday morning, and our son came downstairs, and we were having coffee already, and he was surprised, pleasantly surprised to see me. He was like, Hi, good morning, Shannon Doll. And he said, Give me a hug. And as I gave him a hug, he he went from happy to shaking in my arms, and then he started sobbing. Now that's happened one other time, and it was completely different, a different kind of sobbing. That was when we left him with his grandparents for a month. We thought it would be fun, and that sobbing was from neglect. This sobbing was from happiness, and he didn't know it. And it was so funny because he started crying on me. Of course, I'm like, oh, it's okay, and he says, I'm sad, like a question. I said, no, buddy, you're happy. This is happy tears. So his dad and I tried to explain it to him, and I got him upstairs and got him comfortable, and he was just crying. He could not stop, and he wasn't sad, he was happy. It was so hard to explain it to him because he's never had happy tears that I have ever known. So it was hard, it was really hard. So I just said, Well, I'm gonna take my hot drinks, healthy hot drinks that I have to drink before food and coffee. I'm just gonna take my hot drinks upstairs and have them with him. So I sat next to him, two different recliners, and kind of walked him through it. I gave him a box of tissues, his medicine candy, a couple little snacks on a plate, got it all set up so he could stay in the recliner and be comfortable and have whatever he needed, and gave him a big cup of water and just walked him through it and kept telling him, just let it out, let it out. It's okay. Keep crying. He's kind of blow my nose, yeah, blow your nose, you know. And I gave him a garbage bin right next to him as well, so he could just keep throwing him in there because he wanted me to handle his snotty rags, and he would get to where he wasn't crying, and then he would look at me and I would smile and he would just start crying again. And this went on for at least 45 minutes, maybe an hour. And I just left him to it. I didn't try to console him. Normally, he used to come and cry on me when we lived in Wisconsin, you know, when he would do the what's wrong with me kind of thing, and when he was um going through the bullying and that kind of stuff, he would cry on me and just soak my shirt, and it would be at least an hour, sometimes two hours. I had to lay there with him on the couch and just squeeze him with my arms and my legs, but it wasn't like that this time. It was completely different. I just smiled and told him it's okay and told him he's happy and and I understand and I think I did a good job. I think that worked out.

Speaker 1: 23:28

He's been pretty cool about it ever since. I just thought it was so cute that he was trying to process and ask the question, I'm sad, instead of the normal thing that he'll come down and he'll pout and he'll say, I'm sad and want attention. He knew he was happy to see me, and then he was just surprised by his tears. In my next episode, the trail of destruction continues, yet another set of targets, and they get bigger and better each time. You will not believe it, I swear. I think this is coming out right around the time of Thanksgiving. So, ah! I am praying for all of you. I know these holidays are hard, especially when your family decides they don't support you, or you could be doing better according to them, and they know what your kid needs better than you do, and god forbid you have to host everything and have them tell you that your kid needs just needs a good spanking or whatever it is. Hey, just let it roll off your back. Get your armor on, and hang in there. You're a superhero.