EP.79 Retirement Villages For Everyone… Except Us?

We share raw truths from the frontline of severe autism care. From morning quiet-time rules to fingerprint locks and parent-led training, we fight for safety, structure, and a real village.

• why isolation and burnout demand respite communities
• how parent-led training creates consistent, safer care
• the 15-minute morning rule as regulation, not preference
• using fingerprint locks and auto-locks to reduce risk
• new behaviors and responses
• stepping back when interaction harms the caregiver
• how weather and celestial shifts can amplify behaviors
• a call for shared responsibility inside multigenerational homes
• open request for stories, tips, and educator insights

“Thank you for your donations. When I’m able to save up enough of your donations, we want to help another family in need who may not be able to afford the therapy items, clothing, or specialty food items that their loved one needs.”
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Transcript

Welcome And Mission

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. If I sound a little weird, I have a little sinus congestion that I inherited from my spouse and son. As always, I want to thank you for being here. Thank you for listening. Thank you for sharing these episodes. Thank you for your donations. I really appreciate it. When you donate to that Buy Me a Coffee program, it helps me. Even as little as one dollar, it does help. And when I'm able to save up enough of your donations, we want to help another family in need who may not be able to afford the therapy items, clothing, or specialty food items that their loved one needs. But to be honest, the donations don't come in all that quickly. Because we are all parenting severe autism. We are all pretty much broke. We are all in the same boat. So the most important thing to me, the whole reason I started this podcast, is to let others know that they are not alone. This lifestyle is so lonely. We are so isolated. As you know, I say this all the time. I would really love to start forming some communities because I'm really concerned for the future, not only for my child, but for us, because as I've mentioned before, we've been taken out of the workforce and we are no longer able to earn the kind of money that we prepared ourselves for so long ago. And when you think about senior care, elder care, things like that for the child, it goes right into what about us? What about our senior care and elder care and retirement and all of that? Because we have given our lives, our working lives, to raising and taking care of our son. And now that he's an adult, he's still not able to receive help other than from us. And, you know, we're really getting screwed. And I believe that if we can start to form these respite communities and build them the right way, it would really help all of our families and it would bring us closer together for those of us who are willing to move to a place that would be more accommodating. And by more accommodating, I mean our own village. Why are there so many retirement villages out there? But there are no respite communities. This is what I'm getting at. Why don't we deserve the same amenities and the same luxuries and the same sense of community and safety and the same lack of responsibilities, if you will, as far as taking care of the land and the building and all of the things that come with having a place to live? You know, it's hard enough to take care of our loved ones who have severe autism and take care of ourselves and give ourselves a good quality of life that allows us to be healthy. Our health is waning simply because of the stressful lifestyle that we are leading, being forced to be the only people who interact with our children. I just don't think this is healthy or feasible for anyone. And I am sticking by my plan, my blueprint for safer lifestyles, respite communities. I would just really love to get the word out and meet more people like us. You know, when I was a kid, my parents were a little bit weird. My stepdad was an artist, and we ran into a lot of other artists, obviously, through doing the art shows and galleries and things like that. And back then, there were so many people in their 40s and 50s and 60s who were starting uh what they were calling hippie communities, and they were buying old public school buildings and things like that and living well. And I think that that model is still a good idea today, more of a co-op. I don't like to say, you know, commune or anything like that, but really a community of people just like us who understand how hard it is to understand one of our children, but how easy it is to understand one of our children. We're the only ones who aren't afraid of our children. And I mean, we are afraid of our children, but we're a lot less afraid than the people who are out there who are receiving training and calling themselves autism experts or something like that. No one's trained in this type of autism except for us. And I believe that we really could get a good team of professionals who would work in our communities with our children because they've been trained by us, the parents. We're the ones who need to train these people to understand how to work with our children individually. And our children, I believe, no matter how old they are, need to have different education options and different recreational options, just like we do. We need recreation as adults. We need time to be able to step away and go forest bathing or do something good for our spirit. I just flipped out yesterday, as a matter of fact, because I'll I'll have the details about the extracurricular goings-ons um in one of my private episodes that you can access as a member. Um, but just really quickly, I want to say that I did. I lost my shit yesterday because I tried to give one responsibility, one action to a member in the household because it was for them. It's the grandfather, I wanted him to go and apply for reduced fee for his license plate renewal tags because he can do that and only pay $10 a year instead of $151 in this state. And I had tried to do it several years ago, but I'm not him, and it's a lot easier for the individual who's applying to actually do the application. So I asked him to handle it, and he went out to the DMV and found out that they don't help with that, and they gave him papers, and he just gives me papers to do it for him. And I got really pissed off and I freaked out. I didn't even sound like myself. I didn't recognize my tone of voice or my accent that came out. I don't know what was going on, but I freaked out on my spouse and I said, I am so tired of being a fucking slave. There are three other adults in this house besides me who actually don't have a diagnosis of any kind of learning disability or functional problems. And somehow all of the responsibility of stuff like this is falling in my lap. I'm not paid for this, and no one in this household could even afford me if I were available for hire. Yet I'm supposed to give up hours of my time to do something for someone else while that someone else sits there right next to his able-bodied, able-minded brother outside smoking cigarettes and drinking coffee all fucking day. Like I don't have anything else to do. I mean, the piling on of responsibilities is endless. There's got to be a better way to live, right? These are things that nobody sees us dealing with. They think, oh, your kids a lot. Okay, have a nice day. I'm gonna go home and have a regular life. You know, they never think about us and what we're going through. And there's no better example of that than when you are in a school talking to counselors, therapists, and educators. And the other example is, well, basically anyone else, extended family, neighbors, cashiers. Like nobody understands. They just deal with what we deal with for the short amount of time that they see us, and then we never cross their minds again. And here we are, suffering every single minute of every hour of every day with the onslaught and barrage of bullshit that comes with this lifestyle. You know, this is like Groundhog Day, except it's the terrible twos meets roid rage. Honestly, that's what this is. The terrible twos meets Royd Rage on a loop, Groundhog Day. That's every single day here. I know I don't talk about a lot of the hard stuff that's going on in our current lives because I'm, you know, just reliving all the stuff that we've already been through. But it is very much walking on eggshells or broken glass and trying to put up some kind of protective shield around yourself and your child because God forbid someone gets in front of your child in the wrong time of day and pisses them off. What are they gonna help? No. No, they're not. It's so much worse than just having a neurotypical child go over to grandma's and get pumped full of sugar and then sent back home. It's so much worse. And it's every day. You have to be so hyper-vigilant in these cases around other people who don't care enough to learn about your child and their triggers or whatever it is that makes your life hell at the hands of other people. For instance, yesterday, actually okay, the day before, yesterday is when I lost my shit about the paperwork, and the day before that, I went off on the family again. I am coming unglued, like constantly. I am allergic to bullshit anymore. I don't have the capacity to deal with disrespect and stupid choices. So I am finding myself matter-of-factly telling people about themselves more than I used to, and I thought I did it a lot before. So the other day, our son wakes up and we're still doing the hey, get out of the house and leave him alone for the first 15 minutes that he's awake thing, because it's really been working. However, last week I noticed that pretty much every day of the week the uncle was in the house. No, he was not in front of our son, but that doesn't matter. The rule is get out of the house. Do not be in his area at all. He doesn't want to be around anyone else's energy. And I don't care if you're in the bathroom. You need to get out as soon as possible because he senses that someone's here and he's upset. So this uncle has been in the house damn near every day during my son's morning quiet time. And he's been in this room where they go and roll their own cigarettes. The door is closed almost all the way. Nobody's bothering our son at all deliberately, but his presence is enough. And I was trying to be cool because, you know, you gotta have your cigarettes and whatever. But just the day before yesterday, I realized something that really pissed me off. See, my son was doing his 15 minutes, and the entire time that my timer was going and I was locked down here and giving him his quiet time, he was going berserk upstairs, running the full gambit of emotions. It sounds like an insane asylum all the time around here, but that day was particularly bad. He would cry hysterically and then roar and boom and stomp and then freak out and hurt himself. I mean, he was doing all kinds of stuff. And I have made it a rule that no matter what he does, unless it's like life-threatening, you know, no matter what he does during that 15 minutes, we do not step in and try to tell him how to act. And my husband made that mistake a few weeks ago, one time, and I just let it happen until it was over, and then I said, you know, that really wasn't cool. That's not helping. What we need to do is let him work it work it out. He's gotta work it out on his own. What self-soothing, whatever you call it, what he does not need is a parent to come up there and tell him how to behave during that first 15 minutes. That's not what it's for. He has to figure that out, and some days are gonna be worse than others. I just thought, well, maybe this is one of those days, you know. But as I started walking up the stairs to check on him, because it had been going on longer. Now, if he's going crazy for the entire 15 minutes, I will add another 10 or 15 minutes to my timer. I won't go up there until he's calm. Some days take more than others. So the other day he was going berserk, as I mentioned, and 20 minutes had gone by. So I started heading towards my door, and as I did, I heard someone above walking and they dropped something. I know it wasn't my son because I could hear that he was in the dining room doing all of his yelling and whining and crying and stomping. I could hear he he does it on purpose because he can see the old men out there and he'll try to piss them off through the window, or he's letting them know that they have pissed him off through the window. So I I knew that's what he was doing, but then I realized that only one of the old men was out there. And I went upstairs and I tried to give him a little extra cannabis, and I tried to see if there was any damage or, you know, make sure everything is okay and see if he wanted me to give him more time before I made him his breakfast. And he said he did want more time, and I apologized to him once because I knew somebody was in the house. So I told him I'm sorry that they're not listening and they're not giving you your space. I told them how this works and they're not doing it, and I know that, and it's not your fault, and I'm sorry. And he seemed like he understood that we understood each other. So whatever I was doing in the kitchen, I got wrapped up and I was ready to leave. And I stepped into the living room where he was containing himself while I was there, and I turned my head towards that room where somebody was in there rolling cigarettes. I very loudly, again, apologized to my son. I'm sorry that whoever is in the house right now is so stupid and inconsiderate that they don't give you the respect of your 15 minutes. I don't know what else I can do. I'm really sorry, you know. So I just laid it on pretty thick. And as soon as I got done saying that and started walking downstairs, the uncle walks out of the cigarette rolling room and walks back outside. Now, look, I don't have a problem if you don't know how to manage your time when you don't have a job, you don't have appointments outside of the home, and you don't have any yard work that you're doing right now, and you don't have anything else keeping you occupied except sitting on your ass outside and watching videos and smoking cigarettes and drinking coffee. You can't manage your time well enough to make sure you have a full pack of cigarettes rolled up the night before. Um, sorry, you know, I understand what it's like to just, you know, need that cigarette. So I don't think it's a problem if you emergency-like have to come inside and roll a couple of cigarettes to get you through that 15-minute god-awful window that you just can't come in the house. But when you are in there for the full 20 minutes that my son needs, and you're in there the whole, you're the whole time, really, that is disrespectful to that young man. He is 25 years old, he has nowhere else to go. He's stuck here in this house, he doesn't have any vices, he is not gonna go sit outside, he can't go out front, he has nowhere else to go to get away from everybody. It's everyone else's job to get the fuck away from him. I don't know why that's so hard to comprehend. It's only 15 or 20 minutes unless you make your presence known for that entire time. And then guess what? It's two to three times longer. And now you're not only disrespecting my son, but you're disrespecting our entire family unit because guess who has to deal with that and guess who has to calm him down? So I went off on the grandfather. I was not able to find the uncle at the time, but I told him that I'm gonna start opening the window and telling you guys when Jacob's 15 minutes are starting. Hopefully that's fair warning. You will have one minute to get your cigarettes or go to the bathroom or get your coffee, and then you need to stay out. Somebody has you I don't care what it takes, but you people have got to give this young man some fucking respect. The grandfather agreed right away, so I don't know what that means, but I don't know what else I'm gonna do. I I don't know. Maybe I'll go pour a little bit of water over all of their tobacco. I don't know. Maybe they'll fuck around and find out. I am not kidding. I forgot to tell you what I did to try to remedy the problem that we ran into with our son running into the garage and destroying everything. Apparently, I was so distraught by my own story that I forgot to give you my solution. So, my solution was to get emergency shipment of another fingerprint handle door lock thing for outdoors. And it's actually the same one that I used on our son's closet, and it is weatherproof. It's got like this cover that goes over the handle to protect it from rain and snow and all of that stuff. And it does come with a little key in case it dies, like because it's the rechargeable handle. And so let's say it runs out of charge and and you missed the window to charge it. Well, you can pop the front of the handle off, and there's a little key in there, and and then you can open the door and then charge it. So it's a USB charger at the very end of the handle, and it takes like 30 fingerprints or something like that. So on this one for the garage door, I fingerprinted everyone who needs access. So we did the whole family except for our son. I did the guy whose guitars are in there, and we had a couple other friends who used to help themselves just let themselves into the garage and wait for my spouse to come out there. So I got everyone's fingerprints who needed access into the door handle, and that's it. Which was great because we had that half-brother hanging around a lot, and he was into the dark side of life and liked to steal and break into people's things. So that was another layer of protection from him as well. But I had that, you know, I have Amazon Prime, so I had that within a day or two, and that was the end of it. Our son never got back into the garage alone and unsupervised, and he was never able to destroy stuff. I actually know that is not true. My spouse, of all people, kept not locking the handle. He kept not pulling the door. All you have to do is pull the door shut and it'll lock. You can set it to when it locks. I had it set to lock within three seconds of closing the door. And that worked both ways. So this was interesting because number one, we want to keep him out when no one's in there. But number two, we want to keep him out when my spouse is in there hanging out with his buddies or jamming with his buddies or doing some woodworking and needs to be safe and doesn't need a distraction of this psychotic big ass teenager running in there and booming his voice while my husband is, you know, using a saw or something. So it gives a layer of protection to my spouse so that he can know I have adult time right now. Everyone else is out there with Jacob. I am in here, the door is locked, no one can access unless they have a fingerprint. So my son is not going to come in here and ruin my vibe. I thought it was brilliant both ways. Except my spouse decided that he had a problem with locks. He refused to shut the door when he was in the garage. And then sometimes when he would come out of the garage, oops, he just would forget to shut it. I kind of got even more hyper-vigilant about the door because he's setting the example. Now, if he forgets to shut it on his way out, then his dad sees that, the grandfather. And then he'll think that it's okay for him to forget to shut it on his way out. If no one's shutting the door, then everyone else who comes out that door or in that door thinks that that's the precedent. They think, okay, well, this door doesn't get shut now. I'm not going to shut it either. So now we're risking our son's safety. We're risking the well-being of all the equipment in there that doesn't belong to us. We're risking the well-being of my spouse's mind, you know. And it's all because suddenly someone has a problem with a locked door. But the way that our lives started unfolding meant that he was really gonna have to embrace this idea of locking doors. But this was a really hard uphill battle. And I did eventually give up. I learned something there, and I keep learning the same lesson because apparently I didn't realize that it applies to everything in life. But when you give up, they fall in line. So go ahead and give up. I I promise you, if you are fighting an uphill battle with neurotypical people in your life, and it's got something to do with your mental health or your child's safety or both, give up. Tell them one final time. I hope you get bored with this, or whatever it is that you have to say over your shoulder to alert everyone that you're done, and just give the fuck up. Give up. Who cares? Give up. They will fall in line. That's what I've been learning every single time I try to get something done, and we're going on probably seven years of me learning. This lesson. I'm done learning. I understand now. I don't care. I will walk away because I set the boundaries, I set the rules, I let everyone test me one time just to reassure them that I am very clear in my thinking. I am not mistaken. And then I give up. So anyway, I gave up and all of a sudden the door started getting locked. But the thing about my spouse not locking it when he's in there is that he's a little leaning towards the passive aggressive. So he will allow his son to come in and yell at him until he can't stand it anymore. And he'll allow him to come in there and disrupt every recording that he's trying to do of playing music. He'll allow him to come in there and scare the shit out of him while he's woodworking. He will allow all of this stuff. And I say allow because all you have to do is close the door and it automatically locks. So when you choose not to do that, even though there are capable adults on the other side of that door who can take care of that boy that you're locking out, who has no business in there in the first place, well, now you're causing problems for the family. And I say that because he would allow all of that stuff to happen and allow it to build up within him. And then guess who gets to deal with the brunt of that discomfort when the cup is full and cannot hold anymore? It's the capable parent on the other side of that door running the household and taking care of that child who gets the brunt of the other spouse's discomfort. I am not cool with that at all. And this was a fight like every day. I don't understand why you won't close the damn door. I got a lock. Yeah, I know, but I don't like locks. Well, okay. This is an ongoing problem. I know that I am scarred because of all the beatings that I've taken by now from this kid. No, the kid never tries to beat up his dad. Well, not up until that point. It did come later, but I know that maybe that makes me seem like I'm more of a hard ass and I stick to the rules more, but I'm making the rules for protection in the first place. And no, I'm not gonna back down. I don't this child needs structure. That's one of the main reasons that he acts out in the first place, is if there is not enough structure. And if all the adults are not on the same page, that indicates that there's not enough structure. And these adults treat me like I'm some kind of dictator, but I'm the only one who seems to understand that this kid needs his world zipped up tight. And it benefits all of us to do so. Oh, yeah, that was a long rant. I apologize, but it needed to be said because it goes along with what we're doing, and this is one of the unseen battles that we fight as caregivers of someone with severe autism or any severe level of disability, I think. Okay, so now, right around the time of the garage invasion, he started this new thing. He found more words, yay. So he would now wake up screaming and stomping and crying and carry that all through the house and go through the entire menu of abuse that he has figured out for us. And once he pushes us to a point where we tell him, I need you to stop this, or go sit down, or you know, try to put him in a timeout, um, sensory deprivation, stuff like that. Now he has a new way of resisting, which is a big booming voice sticking his hands in his sweaty onion armpits, saying, No, I can't. No, I can't, no, I can't. And it didn't matter. It didn't matter what you said to him. You know, you could say smile, you could say pet the dog, you could say put on your shoes, you could say close your eyes, you could say breathe, take a drink, anything at all. No, I can't. And that was the rest of the conversation for the whole day, no matter what. It's funny how when we were in Wisconsin and he was torturing me every day, it got to a point where my spouse told me, you might remember this, he told me, I want you to stop interacting with Jacob. I don't want you to talk to my son. I want you to completely leave him alone. I remember when he said that, and that really just that really hurt me because I was really tight with that little guy. We were buddies for a long time. And I remember that I used to cry about the half-brother when he was there. I really, man, I did not get along with that kid at all. I did not have good feelings about him. He was he was not any kind of pleasure to have. We thought we were rescuing him from a bad situation here at the house where he lived with his grandparents, but then we started to realize that he wanted to create that bad situation wherever he went. And I remember one day crying out of guilt to my spouse and telling him, I don't feel the level of care towards that boy that I feel that I should. I think all kids deserve to be loved and to be respected and just cared about in general, you know, and I cared about him in general, but that really started going away. The worse he acted with my son and with me, the less I started to care about his well-being. And I felt really guilty about that. And one day I cried to my spouse about it, and I was like, you know, I feel like I'm living a lie. I am trying to care for this boy. I'm trying to keep him safe and healthy, and I'm starting to feel like I don't really care if he's safe. And I think that's terrible. But it was just a stress response because I kind of had to make a choice. Who am I going to protect? My son or his half-brother who's picking on him and who's picking on me and who's ruining the stuff that I have in my house and blaming it on my son. So it was a big thing, but I just wanted to say that I on that day when I broke down to my spouse about how I felt about him, I said, I don't know why he can't just be more like our son. We're buddies. He's my buddy. Why can't this kid be nice to me and let me take care of him? I don't understand, you know. So anyway, this is kind of just all over the place, but hopefully you can uh follow my train of thought here because see, at that age, eight, nine, ten, eleven years old for my son, even 12 and 13 years old, we were having fun running around the property, chasing the dog, letting the dog chase him. We had a good time. It just happened overnight one night, or he just didn't like us anymore. But when my spouse about three years later told me to stop interacting with our child altogether, I was really hurt. And I I thought he was saying it because he maybe was tired of me telling him about my day and about all the stuff that our son did to me while I was trying to work and drum up some business for us to be able to pay our bills. I thought maybe that was just like him washing his hands of the situation and telling me that I was no longer the kid's mom or something. But he said that he told me to step back because he thought it was bad for me. And it was. I really felt like the kid was making me physically sick. So he was right if that's what he was thinking, but it was hard. I felt like it was unwarranted. And then, you know, fast forward to these years and this particular summer from hell, and I would have loved for someone to say, stop parenting him. Just step away from him, don't think about him, don't worry about him. I have it. Don't worry, just find something else to do. You know, I would have loved that during the summer of hell. It just depends on what time in your life these things come around, how you feel about them, right? In my next episode, I want to share another story with you. The behavior is getting worse in these stories, but eventually it changes to where I'm amused by it. So we just have one or two more events before it actually becomes amusing because the focus changes. So that makes a huge difference on the way that I view the event. Right now, I just want to say if you have noticed that your child is affected by, you know, the moon and the planets and all that kind of stuff, March is going to be very active planetary-wise, and you might plan to kick up your cannabis use, whether it's for you or your kid, I don't know. We're already experiencing the manic episodes. That's what I call them. He's not diagnosed with anything. I think I see a lot of mental illness in our boy. And I also see that it's coming on the heels of being disrespected by family members and possibly having too much alone time with the TV in the garage and all of this eclipse stuff that's going on, and all of these planetary movements that are going on. They are really causing our sun some imbalance. Also, the weather. We had snow two days later, it was 70 degrees, and now we're getting ready to have more snow, and he's affected by all of that. And he just came down here with his headphones the other night for, in my opinion, no reason. But when I woke up the next morning, there was snow all over the place. See, he knows stuff. He can't name it or place it. No, there's no loud thunder during the snow, usually, but he knew something was coming, and that's how, like I said, I don't need a weather report. I can just look at his behavior and I can tell that we have inclement weather coming. I've been fortunate enough today to have a window of peace and quiet because the boys went grocery shopping, but I can hear that they're home now, and I can hear little Mr. Jacob wailing. I've double-dosed him cannabis already this morning, and um, yes, someone was again in the damn cigarette rolling room. And lo and behold, he acted like a freak for way longer than normal. So I don't know. Do you guys have any suggestions what I should do with these inconsiderate people? All I need is 15 minutes for my son to be alone in the house. Uh I don't I don't know. What what am I supposed to do? I'm really tired of having to babysit 60 and 70 year old men. This is not what I'm here for. That's not why I'm on earth. I'm pretty sure I was not put here to do this. What about you? I would love to hear from you. Let me know how it's going at school. Let me know if you are an educator. I know there's a few of you that work with our kids at schools, and I'm so grateful for you because you are the good ones. You're so rare, and I really appreciate you, and I'm sure the parents do as well, especially if they have experienced other people on the other side of doing good for their children in schools. You guys know who you are. I'd love to hear from you and see how it's going. And I would love to hear from parents and see if you guys have experienced any of this kind of stuff, and if you have any suggestions, or if you have any questions, or if there's a subject you would like me to visit for you, if I've been through it, I'll be happy to. So, yes, your feedback is what I'm asking for. Thank you so much for listening. I must go tend to my duties. Hang in there. You're a superhero.