EP. 77: Our Son, The Welcome Mat, And The Pants Problem Severe Autism

We open our hearts about caregiver fatigue, broken trust, and the sharp edges of life with severe autism while weighing practical options like group homes and community respite. Along the way we face language boundaries, public behaviors, new obsessions, and small moments of joy that keep us going.

• caregiver stress after years without respite
• loss of trust with family after neglect
• emotional needs of severe autism, not stereotypes
• dependence vs dignity and pacing independence
• marriage strain and the ethics of group homes
• community-based respite and pooled solutions
• summer of hell at day camp and stripping
• language boundaries and slurs corrected
• wardrobe tactics to reduce impulsive behaviors
• emerging obsessions and safety concerns
• gaps in medical care and self-regulation tools
• family triggers and a moment of self-advocacy
• humor, creativity, and small wins that sustain us

Please remember you can support this podcast and help me keep it free for everyone who needs it by donating through the Buy Me a Coffee program

Transcript

Welcome And Caregiver Stress

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. Please remember you can support this podcast and help me keep it free for everyone who needs it by donating through the Buy Me a Coffee program. As little as one dollar makes a huge difference, you wouldn't believe it.

SHANNON CHAMBERLIN 0:36

I want to start this episode with a quick acknowledgement about the stress that this type of lifestyle puts on the caregivers. Um, our family has been a family for nineteen or twenty years now. Me, my spouse, and our son. If you're new to this podcast, I'm just the instant mom. I do not have my own children, and our son was already six years old when we got together. And yes, he was already diagnosed with autism, although he had not been diagnosed by the severity of it yet. That didn't happen for almost another ten years. So I'm about to be half a century old, and my husband is actually two years younger than me. Um, it's gotten really hard. And it seems like if it's not one thing, it's the other. Particularly, if it's not our son's behaviors, it's our exhaustion from dealing with all of these behaviors for as long as we've been dealing with them.

Trust Broken And No Real Respite

Emotional Needs And Harmful Stereotypes

Dependence, Servitude, And Burnout

SHANNON CHAMBERLIN 1:42

We have not had a real break away from our caregiver roles since about 2012. That was when we still didn't really know that he was severe, and we trusted his grandparents to take care of him for almost a full month, and that was uh the last time. You know, the last time we ever were able to trust a family member because when he came back to us, we could tell that he was miserable from neglect. Um, nobody knows what to do with our child, even if we tell them what to do with our child. And I don't know about your child, but ours in particular does have specific needs for basically just human interaction. Even though he's not great with people his own age, he does he is still human and he does have emotional needs. And if he feels that he's being neglected in any way, it really takes a toll on him. A lot of people in the profession of being therapists or whatever they call themselves in the field of autism, they seem to think that kids like ours don't have an emotional capacity. They are more robotic and they don't feel. I don't know why. That's the impression that we've gotten from a lot of reports that we've read and people that we've met that, you know, these kids are detached and they don't care about outcomes and they don't care about people. And I don't know, maybe that's true, but our kid does care about himself to a point. He he cares about being cared for. He does not believe in caring for himself, he does not believe in learning to use his hands in a way that would enable him to be more independent. He believes that he should be served and pampered, and we have fed into that basically his whole life. And so now we have a 25-year-old man with a beard who calls himself a baby and tries to cuddle up in our lap as if he were a baby, and absolutely refuses to do anything for himself. And if he is forced to do too many things for himself, such as get himself some water, get himself a healthy muffin snack out of his cabinet, make his own bed, you know, too many things like that in like one short time frame, he will absolutely go into some weird kind of depression. So we have to balance it with servitude, if that makes any sense. And we're trying to move away from that. But when we left him with the family the last time in 2012, he was only fed and he was not fed correctly. We don't have proof, but we feel that he did not get the interaction from other humans around him that he needed in order to feel valued and safe and cared for. And that is a big reason that we have not had a break since. Not being able to trust family members who say they love him and say that they think they can help us has really taken its toll on us mentally, and I believe that this lifestyle is putting a huge strain on an otherwise decent marriage. Um, my heart is heavy with that today. So if any of you out there are feeling that and wondering if it's just you, it's not. It's hard. I think mainly because this is not our chosen field of work or expertise. This is just something that we're doing. And yes, my spouse gets paid by the state to take care of his child, but it's not what we do. It's not what we were trained for, and we're not able to live the true expression of our lives because there is no way to really work and keep this kid functioning. We sometimes are at odds about his future care, and um, I struggle with that because I am not a parent. Um, I don't have that um that bond. I am very bonded to this child. I mean, I know everything about him and I can read him like a book, but I am not biologically bound to him, and I think that perhaps that might remove me emotionally more so than a regular biological parent. I don't know. I'm just thinking out loud because I think a biological parent may be less likely to say yes to the idea of maybe a group home or something like that. And I am not anywhere near hands down yes on that, but I am much closer to believing the reality that this is unsustainable and that I am not meant to be here to be a slave and that I am not going to be able to take care of this young man for the rest of my life. I am much more on the practical side of things than the emotional side of things, and that does cause some friction in my relationship with my spouse, and I think it's because that he is the biological father, and there is a bond there, and there is also, I don't want to say a protectiveness because I am very protective of our son as well, but I think it's more of a sense of duty that maybe a biological parent might have over a stepparent. Um, I'm not sure. And these are things that I am I'm visiting lately in my heart and in my head. I don't want to stick him in any old group home, but I think that we should look into it because there is no question that we were not trained for this and we cannot provide him with all of his needs. We cannot fulfill all of this child's needs. We can't fulfill all of any human's needs, any of us. Nobody is meant to fulfill, completely fulfill one whole person. That's why we have communities.

SHANNON CHAMBERLIN 7:55

And yeah, that actually makes me think of my blueprint for the respite communities that I have delivered to you in the past. And um, if anyone is interested in doing that, you should hit me up, just email me or something. I mean, there are so many different ways we can go about it if we could just get together and be creative. It doesn't have to be a build from the ground up. What if what if we could all pool our money together and I don't know, figure it out and be there for each other? There's such a lack in our space as caregivers of loved ones with severe autism or profound autism, however you want to slice it. There are very few groups of professionals who can actually meet our children's needs. And that's because they are not trained for severe autism. They're trained for cute autism, the stuff that they'll put on TV. It's just a damn shame. It's in my opinion, it's criminal that there is nothing available for our children. So yeah, I'm in a I'm in a dark place about that right now. I just wanted to share that because I know it's not just me. And um, also February. February sucks for this kind of stuff personally for me. So if you've ever noticed that you get more down about your lifestyle towards the end of January and through February, you're not alone. I have a dear friend who actually has the same problem that February is rough.

Marriage Strain And Future Care

Group Homes And Community Models

SHANNON CHAMBERLIN 9:14

A few more things that our child developed during the summer of hell. We know we thought we were being really awesome parents after we found that day camp that we were sending him to. We thought that we'll send him five times a week, five just send him every day of the week that they're open, and we'll be awesome. He'll love us, he'll love his life, he will get away from us, he'll get away from everyone that bothers him, he'll go to this great camp where he knows that he is welcome, he fits in, and we'll have a great life. Well, that didn't pan out the way we thought it would. It turns out we were still in that space where nothing made him happy. He carried that with him from Wisconsin. The last couple years we were in Wisconsin, he was like that and it didn't change, it got worse, and nothing made him happy. I increased his cookie dosages. He started at about an eighth. I increased it to a half, eventually it went up to a full cookie, and it just got worse from there. He started this thing, I told you one time that he was at camp and he pulled his pants down and screamed. Well, this became just a regular part of everyday life, apparently. Sometimes he would do it at home. He would um rip his shirt off over his head and just pull his pants down and leave them around his ankles and then just stand there and and roar. Um that was weird, a little intimidating. I didn't know what he was gonna do afterward. Kind of kept you on your toes, but when he doesn't do anything afterward, then you can laugh about it because it really is ridiculous. Why would anyone do that? That's just so silly. It doesn't it doesn't make any sense. I mean anyway. He starts doing this at camp regularly, I guess, and we start getting reports, written reports sent home pretty much every day that he did get to go. There were some days that he just couldn't go, and there were a lot of days that we would get a call to go pick him up very early. And he was only there for, I don't know, like five hours or less, but we would have to pick him up halfway through. It was just ridiculous. So one day he really stepped over the line, in my opinion. Now, see, this is um this might trigger you if you're sensitive to derogatory comments. I am Gen X and I am not that sensitive to the comments because when I was a kid, certain words were actually used medically to describe people with certain medical problems. For instance, I worked for I was like 11 and 12 years old, and I was in a teen work program, and I got hired by a Jewish doctor, and he told me that he wants me to come over, learn how to cook their food with the Jewish ladies in the kitchen. And then while the family was having their dinner party, I needed to go upstairs and keep his retarded daughter occupied. Back then, retarded was a medical condition. I think maybe now looking back and remembering, I think maybe she was uh living with cerebral palsy, perhaps. Her name was Stacy. She was awesome. I loved her, she was much older than me. I did a great job with her, and I had that job for many, many years, and they paid me very well. Also, during that time, the word got shortened to be derogatory towards people, and so you would hear your peers call someone a retard if they were being dumb or silly or whatever. It was just a word back then, and I hope you're not triggered. Now, here's the interesting part. I don't teach my son that word because my son lives in a different time, and he will always be in circles with kids and their family members who would be devastated by the use of that word. While I'm not offended by it, I don't teach it to him. So it's kind of a weird situation here because he seems to have learned almost everything from me, except for the fact that he has spent a lot of time with his grandfather, who is absolutely uncouth, I guess you could say. He is very inappropriate, he will have inappropriate comments and conversations with complete strangers, really bad subject matters, and it's just damn embarrassing. So I know that my kid got certain things from hanging out with him. He's still getting them. I keep trying to tell him you can't use these words. My kid goes out in public. My kid is around different races, different abilities. There is just no room for these mistakes to happen because you're gonna get my kid's ass kicked one day. So this is a constant fight that I am fighting. No one else gives a shit, but I do.

SHANNON CHAMBERLIN 14:01

And I say all of that to say this - We got a call one day from camp, and they said that he pulled his pants down, or possibly took them off, and they were shorts, I believe, and started running around the room at camp. And he started yelling, even though he had lost most of his words beforehand. He started yelling, and he was yelling, according to the people at camp. He was yelling and saying, I'm retarded. You're retarded, we're all retarded. And I was fucking devastated. I cannot believe that that is what came out of his mouth at that location in front of those people because I didn't teach him that. And it's so cruel to have a family member stab you in the back like that because I protect this child. That is why I don't use those words. I don't use racial slurs and I don't use words like that. So I know where he got it from, and I have told that dumbass every day since we've been here. Please clean up your language. My kid goes out in public, my kid is around people who will not want to hear these words. He uses the slurs. I mean, he's 73 years old. What does he care? But we're in a different time now, and that's what we're dealing with.

SHANNON CHAMBERLIN 15:25

So, yeah, part of the summer from hell is my kid running around calling everyone at this camp, The only place that he is welcomed and feels at home, he is just burning his bridge, in my opinion. He still goes there, everything's fine, but that was really, really messed up. If that offends you, I am sorry. Hey, you know, if you haven't figured out by now, I really mean I am I am so sorry. It's not cool at all. I know that people are sensitive to that.

Summer Of Hell At Day Camp

SHANNON CHAMBERLIN 15:56

So we get him a new wardrobe with buttons. And of course we're working on the language. Now he knows, he actually knows that he can cuss in certain places and not in others. He's always understood the boundary for that. You know, he he knows he can say certain stuff in front of me, but not in front of a teacher, etc. It wasn't hard to get him out of that. I think he just glitched out and went the wrong way that day. I don't think I've ever heard him say it since. Well, that's not true. I hear him say it to his grandfather, and I still have to reprimand him because I just can't have him comfortable saying these words. I don't care where they're at, you know. I would rather him say a bad word, just a, you know, any kind of cuss word, than these types of words that are insulting and hurtful. We addressed that and we address it almost every day, especially when he's going out the door to camp. You know, nice words, nice hands, nice feet, indoor voices, hunting voices. Those are the things that we always have to say, basically to start his day, and then we keep it going all the time and all the way to camp in the car. Nice words, nice words, nice words, just constantly reminding him so that when he gets out of that car, he's at least got a little bit of programming in him that will be the angel on his shoulder and say, no, no, no, don't say these things, you know. That's the best we can hope for with that. But we were having such trouble with his wardrobe. And ever since I met him and his dad, our son has had a belt. I was always really impressed by that because, you know, he seems like he can't do much for himself, but he has a belt and he can apparently operate it well enough to go to the bathroom on his own. So we kept the belt and we had it for years and years and years. Yes, we had to change it to get a longer one when he got bigger, but he is really small. So when he was 15 and 16 years old, we started having a lot of trouble getting pants that fit him in the length and in the waist at the same time because he is skinny as a noodle in the waist and he's almost six feet tall all of a sudden. So no regular pants worked anymore just because of that inseam. So we decided to start getting him more comfortable clothes before he started stripping himself in public. We went to the jogging pant waistband style, where it has the adjustable string that you can tie on most of them and a nice soft elastic waistband. And he wore a bunch of, you know, like off-brand starter clothes, you know what I mean? Like just jogging pants and stuff like that, not sweatpants, but the silky kind. And that was his wardrobe. So he had shorts, you know, basketball shorts and long pants in that style because it gave him plenty of room for his junk and it fit his waist. And that was the best that we could do. Well, now he's stripping at camp. That's not okay. So we have to go back into a different style clothes. So I I went crazy and went to Goodwill and got him a bunch of shorts for the summer with buttons. Then we tried to reincorporate the belts. And that was the best I could think of. You know, if I could just make it difficult, maybe I could get two buttons, you know, and you gotta keep it balanced because you want him to be able to easily undo his pants if he has a bathroom emergency, but not so easily undo them if he's just having a hissy fit and he wants to strip in front of everybody. We just tried a bunch of different combinations there until he decided to not cooperate anymore, and then we had to flip-flop back over to the jogging waistband style.

Language Boundaries And Harmful Words

SHANNON CHAMBERLIN 19:31

And he developed this weird obsession with the door mat. The welcome mat. I woke up one day and he, you know, ran the gauntlet of all the stuff that he normally does. And it was a day that he didn't have camp. And the next thing I know, he's crouched down in front of the back door, and he's playing with this welcome mat intensely. And he's very intently placing it on the ground up, on the ground up, on the ground up, and just in a very specific sequence of touching and moving, and then place it in a bit very specific position. Then within a few hours, he started to elaborate on his movements with this mat. There was nothing else that I could get him to focus on. He just wanted to do this. And I think this is really interesting because everyone has always asked me since he was like eight or nine, oh, does he line stuff up all the time? No, not really. Um, he doesn't do that typical autism thing that everyone thinks kids with autism do. He doesn't really line stuff up, he doesn't really organize things. Um, at least at that time he did not. Everyone thought he would have this cute little quirk where he might line up all his toys or line up all his videos or movies or shoes or something. But no, he didn't do that. He didn't do anything neurotic like that at all until this mat. I mean, there were some times, one time in Wisconsin, we got him a nerf football so we could try to teach him to catch and throw, and one day during his fit, he just picked it apart, put the whole thing into little pieces right into my garden table. So he started developing stuff like that, but it was more destructive, not lining things up or organizing things. He was just methodically destroying anything he could get his hands on. So that was a big phase right before we moved here, and it was not a happy time. It wasn't cute, it wasn't quirky, it was destructive, it was angry, and you couldn't stop him, and it was obsessive. So if he destroyed the whole football, which I actually have on video, then he would move to something else and start destroying that. Anything he could get his hands on, that was around the same time when he was shoving the soap down the sink and the deodorant stick down the sink and all that stuff. It went from that into everything I'm telling you now. So he's inside and now he starts flippy flippy with this welcome mat. And you know, he's doing the ey e Flutters and he's just focused very intently on this welcome mat, and he's flipping it, and then he's flipping it the other way. Flip it, flip it, flip it, flip it, flip it, flip it. And then over the next few days, it evolves to him taking it outside and flip it, flip it, flip it, flip it, flip it, flip it. And then he would throw it up in the air. So we were, you know, a little bit entertained by trying to see if there was something going on. Like, I don't know, we were just trying to figure it out and watching him and studying him. And uh, we would try to break his concentration and get him to focus on something else because it didn't seem healthy. It was really hard. He went from throwing it up in the air, up and over the railing on the porch, to taking it out in the backyard into the grass, and then he would scream and violently throw it up and over the fence, into the outside yard. And that became just a regular occurrence. Well, he started doing it while one of the family members was out there mowing and it almost hit him. Somehow he ended I don't know if it got mowed one time or what, but it really got destroyed. And his grandfather felt so bad for him that he went out, he went right out and bought him a brand new welcome mat. One for inside, one for outside, I think. And he just took over both of them, and it now becomes a thing of violence. Instead of just flippy flippy, toss flippy flippy, it was flip it, run it over to the fence, throw it over the fence, just as far as he could. And now it's flying into someone else's property. And that got old real quick, but it went on and on and on, and he did it every day, all day. If he didn't go to camp, that's what he was doing. I wanted to mention that because it was concerning. I don't know. I just didn't feel that it was healthy for him to be obsessing over it like that, but he started showing signs of obsessing over everything once he started obsessing over the welcome mat.

SHANNON CHAMBERLIN 23:57

So now every other thing that he does is also mixed with an obsession towards some angle of it, if that makes any sense. The other thing about this time period is that we still hadn't found a doctor. We hadn't yet learned about any meds for him or anything like that, and it was a desperate search. I don't know why it's so hard, but we had not had any luck with that yet. I just, I can't remember why it was so damn hard, but it was. And so he had not had any medical attention yet. We were trying, we had him signed up on all the programs and everything. I mean, we did everything we're supposed to do, but we had not yet received any medical attention for him, and that left it to us completely. So we had our systems of calming him down. I taught him yoga breathing back in like 2010 or 11. We always try that, and that's the first step, and you know, we just had our methods. We would unplug that stupid light above the sink and do everything we possibly could to make him happy and calm, and we would just get him calm and something else would happen. Namely, his grandfather would interrupt everything with his bullshit attitude. So I know I told the story one time a while ago and how proud I was of my son for doing what he did, but now I can put that into the context of the behaviors and everything that you're hearing about. We didn't know it until this happened. Then we became able to clock it as a pattern of dissolution, I guess.

Wardrobe Battles To Prevent Stripping

Obsessions Emerge: The Welcome Mat

SHANNON CHAMBERLIN 25:32

I feel like that's not the right word. Sorry, but we would get him calmed down and then he would leave our energy or our presence and get into the energy or presence of the other people in the house, which at that time was the grandmother, the grandfather, and the uncle. Well, the grandmother was rarely ever around, so it was mostly the grandfather and the uncle. The uncle doesn't really interact with him all that much unless he's really feeling sociable and then he's like really loving to him. But usually, so I mean, now we're narrowing it down to the grandfather. The other person that was around periodically was a real problem, and that was his half-brother. That kid really damaged my son by his behaviors, and so he was around. He's the one that lived with us for a while and would always torture him quietly and cause our son to just go ballistic for no reason, apparently, but it was him, and we just couldn't hear him. You remember that? He was around, but this one particular day it was the grandfather, and I caught it, and I was so pissed off. But my son handled it his way. So I just got him calmed down. His dad and I had been working on him, working on him, working on him to get him to calm down and accept life the way it is. And we just got him to a cooperative point where he was going to be receptive to good input. Well, that also means he's receptive to bad input. So we got him receptive, and then he goes outside. He didn't do anything to anyone. He was ready to be receptive and to be a good boy and to be easy to get along with for who knows how long. And as soon as he gets outside, his grandfather says something to him to tell him what to do. You know, well, Jacob, you shouldn't be doing that or you should be doing that. And whatever it was that he said, first of all, his tone of voice was dog shit, and he did not deserve to be spoken to that way because he hadn't even interacted with him yet. And I heard it. I was there. I don't remember what he said, but it was bullshit. And then secondly, whatever it was, is he was giving my son a directive that he had no business giving my son. We were doing our parenting. He had no business shooting off his mouth just because he's standing there smoking his cigarette and he wants to have some fucking attention. So he does that, in my opinion. He verbally abuses my son, and this is the day that my son ran right off the porch over to this weird round stepping stone. There's only one in the whole yard. I don't know why it's even there. He runs right over to that, and I know I've said this before. He has this thing where he'll raise his he'll put his fingers together, like his first three fingers together, and he'll put his arm way down low by his knees. If my voice is fading in and out, it's I I'm actually acting this out. He'll stand there, he'll put his arm way down by his knees, and then he'll shoot it up in a half arc out to the side and up. And when he goes down, he brings his fingers down by his knees, he'll be like, uh and then he'll shoot his arm back up and he'll go pew. So on this day, his grandfather pissed him off, so he runs over there, gets on that particular stone. So he's like on center stage and he goes all the way down with his fingers down to his knees. He says, fuck. And then he brings his hand up, he says, you and then he started flapping and doing all his stuff, and he was very angry. And I was so proud of him because yeah, fuck you. You know, you don't do that to him. You have no idea what you just ruined the whole damn day. I was so proud of him for that. Yes, I taught him to stick up for himself and tell someone fuck you if he has to, but I did not teach him the R word or any slurs. In my next episode, one of the biggest meltdowns ever is coming up, and it involves property damage and physical violence on me. I am going to make it a separate episode. I can't go into it right now. I have to get my head in the game for that one. And one cute story I've got to share with you right now is he is using his belly button to talk. I don't know. I he started doing that a little while ago. I may have mentioned it in an episode maybe a year ago or so. But yeah, he's now pulling up his shirt or taking off his shirt and putting his hands around his belly button and then moving his belly button while he babbles whatever it is that he's babbling, and uh it's hilarious. He's such a prankster and such a jokey guy. I don't know. He's just so funny, and I wish that he had more words. He is really uh crafty. He's very crafty and he's very creative. He doesn't have a way to express it, but I think it would be so cool if he had some words um because he's such a shit about it, you know? He's I think he's very sarcastic, kind of like me. Maybe I taught him that, but I think it's just in him, you know? And he's just a prankster. That's the cutest thing that's been going on lately. And I would love to hear about your cute stories. What does your kid do that's like super cute or super funny? Um, anything new that they've picked up lately from anyone? Is it from people or from movies or from games? How does your child form their personality or express their personality after seeing outlets? After you know what I mean? Like seeing other people express themselves. Does your child try to use those methods of expression? I'm really curious. So please let me know. You can always email me at contact.parentingsevereautism at gmail.com. Thank you so much for listening. Thank you for always sharing my episodes. If no one has told you lately, you're doing a great job. You hang in there. You're a superhero.