EP 73: From Chaos To Connection: Parenting Severe Autism Without Sleep, Space, Or Support

We trace a season of sleepless nights, stomping floors, and bathroom chaos into two quiet breakthroughs: independent handwashing and a shared Soup Dance that reveals connection inside repetition. A harsh LED light becomes a surprising trigger, and a softer presence opens space for growth.

• recognizing environmental triggers like harsh LED lighting
• coping with insomnia, nighttime roaming, and sensory seeking
• testing the idea that less praise can reduce pressure
• finding communication inside repetitive questions
• celebrating independent hygiene and song completion
• using calm spaces to invite regulation and connection
• redefining wins as small, repeatable steps
• sustaining caregivers with simple, steady routines


One of the most important things at the end of my show notes is the link for my GoFundMe for the Safer Lifestyles respite communities
You can always contact me at contact.parentingsevereautism@gmail.com
You could still buy me a coffee, and all the coffees are helping me keep this podcast free for those who need it
Please remember to share my episodes the best that you can

Chapters

• 0:18 Welcome, Links, And Support
• 1:36 Are We Hindering His Progress
• 2:37 Daily Cycles Of Destruction
• 5:52 The Nighttime War Zone
• 9:49 Stomps, Creeks, And Endless Patrols
• 12:30 The Lighting Trigger Discovery
• 16:52 Paranoia, Exhaustion, And A Realization
• 20:26 A First: He Truly Washed His Hands
• 22:26 “Sit By Me” And Choosing Connection
• 26:55 The Soup Dance And Shared Music
• 30:46 Finishing Scooby-Doo And Echoed Words
• 33:54 Ten Years Later, Signs Of Growth

Transcript

Speaker: 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 been finding some new products, well, new to our household, that have really been making a difference for us and our son. So keep your eye out at the end of my show notes for new links that I will be posting. They are affiliate links so that I stand to earn a little bit of money from them while making sure you don't have to pay extra. Also, one of the most important things at the end of my show notes is the link for my GoFundMe for the Safer Lifestyles respite communities. And you can always contact me if you have questions, comments, or stories, or anything like that at all. The best way is my email, which is contact.parentingsevereautism at gmail.com. You can also leave me a fan mail on my Buzz Sprout landing page or whatever they call it. And of course, you could still buy me a coffee, and all the coffees are helping me keep this podcast free for those who need it. So your donations are greatly appreciated. And of course, you will always get a shout out from me to thank you for your gracious tips. Please remember to share my episodes the best that you can. And most importantly, just keep showing up, keep listening, and keep kicking ass.

Speaker: 1:36

As I've been going over these weird things that we had to deal with from our son, each story, and I tell the story, then I edit the story, and while I'm editing, I'm reminded of other things. And today's episode and the last episode I released both have me thinking about my episode 61. You may remember how I mentioned in that episode that I was worried that my spouse and I were hindering our son's development just by being around him. And I think that's actually becoming very clear with my return to the household since being at the campground for the summer. I have a story that I want to share with you at the end of this episode about that. And I think you might see the tie there. So I guess I'm telling you that now, so I'll remember later.

Speaker: 2:22

One thing that may not have been made clear about these things I'm sharing with you is that none of these are like a one-off. They're all things that are basically on a schedule that our son seemed to have created in his head. Every single terrible story that I share with you is something that happens like Groundhog Day. And he just makes up new things and includes them in the daily diet of bullshit that we have to deal with as parents in a new environment, trying to entertain him, keep him safe, keep him healthy, do all the things that we're supposed to do with doctors and school and all that crap, plus moving into the house and getting settled. I mean, we did not get a break. He was not easy on us. And I understand that this whole lifestyle is not easy on him, but I mean, I feel like he could have, I don't know, controlled himself a little more. And no, he was not on meds yet. But I just really have a hard time feeling or understanding or agreeing that a person, whether they're on meds or not, is so incapable of controlling themselves. I believe in choices and I believe that everyone makes choices all day, every day. And I believe that my son knows right from wrong. I believe that he knows stress from calm. I believe that he knows exactly what he is doing. And that also ties into my thinking from episode 61, where I was saying that I believe my spouse and I are hindering his progress and development. And the reason I felt that way is because he was always worried about what we would think. You could see he just built this up in his head that, oh, whatever I'm doing right now might piss them off, or oh, it might make them happy. And God forbid, I make them happy. The point is that he is aware that there is a reaction that can happen from anyone else in his environment based on the choice that he's making currently. I really believe that he is in more control of his choices, actions, et cetera, than a lot of people believe. He gets this treatment from others, especially in the field, the professionals, the therapists, etc. Like, oh, this poor kid, oh, this poor baby, oh, he must be so miserable. And no one except the lady at the nonprofit autism place has ever said, oh, this child is choosing to act this way. Everyone always seems to look at the parents like you could do better for your kid. Look how miserable your kid is. But in fact, the kid is making his own decisions. And we're the ones that are miserable because especially my generation, I'm Gen X. You know, we don't come from passive, oh, they'll grow out of it, parenting. You get knocked in your fucking head and you straighten the fuck up. So since we're not allowed to do that, it is quite a challenge to really learn how to parent. It's a concentrated effort.

Speaker: 5:14

Anyway, what I would like you to keep in mind about all these stories is that they are happening all day, every day. Everything I've told you up until this point about the summer from hell is not, oh, on Tuesday he tears up the bathroom, on Wednesday he tears up the pictures. No, it's every day he does all of these things. Just keep that in mind. That's why I break it up into little bite-sized episodes because I don't think I can stand to relive all of the things at one time. It really creates a feeling of panic in me because I remember that they were all day, every day, all through the night. And that leads me into this next part.

Speaker: 5:54

Kind of picking up where we left off with the bathroom. It wasn't just during the afternoon he would run up there. No, it was all day. It was all night. If he woke up in the middle of the night, which he had issues with insomnia, so he definitely was up in the middle of the night. Plus the grandmother having her days off, stomping around the house in the middle of the night. He was definitely up in the middle of the night. You know, if you wake up in the middle of the night and you gotta go pee, you're definitely gonna find water all over the bathroom, the toilet paper missing, and the spindle on the floor. The shower curtain will be either completely torn down or it's messed up in some way. And that's just part of stumbling through the house in the dark to pee so that you can stumble back to your bed and hopefully get a little extra rest without him knowing that you just walked by his room. His room is right on the way to the bathroom, so you have to pass it twice every time you go to the bathroom. I don't know if I ever told you before, but it started in Wisconsin where he was terrorizing me so badly that I actually dubbed him my personal domestic terrorist. His dad hated that term. He would say, Please don't say that. But seriously, I mean, what else can you call it?

Speaker: 7:03

So, in addition to the other things, now a new thing is starting with him, which is making as much noise as possible all night. He was having trouble sleeping, and I think that he didn't think that anyone else deserved to sleep, and his room is right above ours. So he was doing this exorcist crap all night and just sitting up in his bed, um, bucking like a bronco, jumping on his knees, sitting Indian style and seeing how far he could jump in his bed and then landing, and his bed frame is jumping across the wooden floor in his room. It just sounded like a war zone in my bedroom. So, no, for like two or three years, I didn't even sleep. So he had all of us going through this with him. I have always regretted my decision to take the basement and allow the grandmother to be next to the bathroom with her bedroom because this is just absolute hell. I had no way to wake up and ease into my morning. It didn't matter what time I tried to wake up, it didn't matter if it was two, three, four o'clock in the morning. He was already up and he would come running down here into my living area and just start tearing shit up. I got into a habit of I had a little TV tray set up in the living area downstairs, and I would get out of bed and walk straight over to the little table and smoke weed. I had to smoke cannabis every morning just so I could function, get a grip on myself, calm myself down before anything started. I had to numb out as soon as I got out of bed. So all night long, he's jumping, he's stomping, he's yelling, he's screaming, he's crying, and sometimes he would pass out because he was actually tired and he wore himself out and he would go to sleep. Otherwise, it was all night long. We would try to go to bed. Between the two of us, my spouse and I, we would have to take turns going upstairs and telling him, calm down, go to sleep, lay down, calm down, yoga breathing. I mean, we tried everything back rubs, head rubs, and he would just scream, no! Um, he would not allow us to calm him down at all. And if he ever caught himself starting to calm down, he would get really pissed off. And usually it was happening when I would be rubbing his back or rubbing his head or really trying to get him to relax. You can't resist that, really, when I do it anyway. And he would start to lull into a little doze or a little sleep, and he would wake up. You could see it on him. You would watch him, his eyes begin to close, his face begins to soften, you start to think there's that sweet little baby in there, and he would just jerk awake and start freaking out and yelling and being mad and you know, arms flailing.

Speaker: 9:56

So that's happening. And then he would get up and run around the house. So it only takes him like three strides to get through the living room, and there are four stairs between his room and the living room, and he would do it in like two stairs at a time going down, and sometimes he would just jump from the top of the stairs all the way down to the bottom. And I can hear everything. So he would run, leap off the stairs, stomp through the living room. One, two, three stomps like a giant, and then turn around and he's like zombie walking. I would sneak up and see what was going on, and he had his head back and his arms forward, and he would go uh and just make this awful zombie sound. Long, large stride stomping, back and forth, back and forth, back and forth. And then you tell him to go to bed, and he would take every single one of those four stairs with the hardest stomp that he could and as fast as he could. And on the third step, he double stomps. And this is all day, every day, all night, every night. So when we finally tell him that's enough, stay in your room, stay in your bed, well, then he would get out of his bed and find the creakiest part of his floor, which again is above my bedroom, and rock back and forth on this creek and try to tune it out. You know, pretend that you have neighbors above you, pretend that it's completely out of your control, allow yourself to accept that noise as part of your environment and just go to sleep. But it doesn't make for good sleep. As much as you want it to just be tuned out and become part of your environment, it doesn't work. And then you gotta run up there and yell at him. Because you can't holler at him from downstairs because you'll wake up the whole house, maybe. So you gotta run up two flights of stairs and go and have a talk with him and tell him, go to sleep, stay in your bed. Well, then he would jump in his bed, boom, boom, boom, boom, and the whole bed is moving. So this is how we slept for at least two years. I wasn't mad at him for wanting to get up.

Speaker: 11:55

You know, he doesn't have his own space except for his bedroom, and I thought, well, maybe he just wants to be alone. Some of these kids like him just want the house to themselves. They just want to stay up in the dark and do their thing. And I thought, well, you know, maybe that's what he wants, and that's totally fine. I'm not saying you have to go to sleep at a certain time, but it would be nice if you would sleep because I want you to go to camp. So one thing about every single thing that he starts is that we try to figure out why. Either why is he do like what's triggering him? Is it making him mad? Is it making him some kind of unsettled? Is something happening? Is it a person that's making a noise or doing a thing, or is it maybe a sound in the house, or what is it that's causing him to make this decision to do these things? So we start looking around for reasons of why is he up running around the house all night? And then we start realizing that, well, we think we realize that only when this specific light is on in the kitchen does he really dick out, as we say. That's that's just a term that we use when he's being a total asshole. He's dicking out. So you might hear me say that.

Speaker: 13:10

But see, here's the thing: in my house in Wisconsin, I always had a sink light above the sink, and it was always a warm yellow, very friendly light, and I left it on all the time so that people could go through their morning whenever they woke up and not have to turn on a bunch of lights. It was a really friendly light. You could see everything that you needed to, and it wasn't overpowering. Well, my spouse's dad lived there with us for a long time and he got accustomed to that. And when we got here, I noticed that he was missing that light. He said something about it, and then the next thing I know, he brings home a light and installs it above his own sink. Except this was an LED fluorescent type of light. And it's uh it's not the same.

Speaker: 13:54

You might know this already; Fluorescent lights are terrible for you and your child. They flicker and they hum and they are linked to depression and all kinds of other stuff. So when you go to your child's classroom, more than likely you will see that the school has put some kind of screen over the fluorescent lights to give it a better effect on the eyes. Like I said, I think this one that the grandfather bought is an LED, but the color is the same as a fluorescent light. And we don't have those in our life. Even when we had a retail location for our business, we did not have fluorescent lights. We covered them and made them warm yellow. So my child is not accustomed to that awful kind of lighting. We started noticing that when that light was on, he would dick out more than he would if it was off. I told my spouse first, because I don't want to seem crazy, you know, and I just asked him, like, hey, see if you notice this, because I think I'm noticing this. And we would unplug the light at the source in the kitchen when it wasn't needed. And yes, we did notice that every time that light was on, no matter what time of day or night it was, he would flip out as soon as it was on. He would be calm. The grandfather would come in. Okay, well, let's not say calm. He would be fairly calm and fairly decent acting. And then the grandfather would come in and plug in that stupid light in broad daylight. There's no reason for the stupid light to be on right now. But no, he's gotta come in and plug that stupid light in. And within one minute of that light being on, my son would become the Hulk. And my spouse noticed it too. He confirmed it with me, and we had a talk with the grandfather to only use the light when he needed it and unplug it when he wasn't in there. Because all he ever did was pour coffee. You know, you don't need to disrupt my son's life and my life just so you can see your coffee cup. It's not that dark. Even if you just turned on the regular kitchen light, and you know, it would be so much better than that light because it's piercing, it's right there in front of everything, and it goes right in your eyes, and my son doesn't like it. Most importantly, my son doesn't like it. You would think that this man would do what he could to appease his grandson, knowing that this child is destroying everything in his house. It's his house being destroyed. So when you give him a tip on how to keep things calm, you would expect that man to really appreciate that and respect your child's needs. But no, no. I always had to walk over there and yank that stupid plug out of the wall while my son is freaking out trying to hurt himself or me. And always that fucking light was on. So it's been like eight years, stupid light is still on. I never ever got any help with that from that man. He insists on leaving that stupid light on. Thankfully, now the kid's medicated and it doesn't seem to bother him as much because it is part of the environment, but it's really unnecessary, and I think it's really cruel and fucking selfish. All you had to do was buy a warmer white light. All you had to do was try to make it friendly for my kid, your grandson, not even my kid. More importantly, your blood, your grandson.

Speaker: 17:15

Nobody cares. Sorry to say it, but that's the way it's gonna feel out there. So, in addition to all of that nonsense, I believe that I started going a little bit crazy. I just realized, like a year ago, that there was there was a sound that I always blamed on my child. I thought he was fucking with me because of all the other stuff that he was doing. He would find ways to make noises and he would do it incessantly because he knew that it was pissing us off. And there was one noise, because I this became a thing where we would hang out at the bottom of the stairs at our basement door, waiting for him to come into view upstairs while the because the door is open between the two levels, and you had to wait and catch him in the act of getting ready to hurt himself or hurt something else or whatever it is that he's doing, so that you could instantly stop it and address the exact thing that's going on. We were trying to be very specific and catch him in the act, if you will. So we would hang out at the bottom of the stairs and watch for this. And sometimes the door would be closed and you'd have your hand cranking the doorknob so he wouldn't hear the doorknob move because he he can hear everything. And if he thinks you're coming after him, he'll stop doing what he's doing and he'll hide or something. So we were trying to figure out all these crafty ways of being able to keep an eye on him and see what he was getting ready to get himself into without him knowing that we were there, because he would only do it if he thought that we were busy not actually watching him.

Speaker: 18:57

Again, he's making choices. This is not, oops, I'm crazy and I can't help it. This is I am making you crazy on purpose. That's how I see it. So I started getting really, I don't know, it feels like now I can say I was really paranoid. Um, obviously I hadn't had enough sleep for a long time already at this point, but I would stand there and I knew all the different places he would stand and rock back and forth to make different creaks, and then he'll go and stand in a different place and like rock, pick up his foot, and then b-bump, and then rock and pick up his other foot, ba-bump-ba-bump, and then he would kick the wall, boom, and all of this shit. He had a pattern. He would just go through this menu of noises that he knows are not supposed to happen.

Speaker: 19:46

So I would try to catch him, and I'm standing there at the door, and I would hear this, and I'm like, oh, this kid. And I would just wildly swing the door open and he's not there. And I would creep up the stairs and he's nowhere, and I can't hear him. Walking around or anything, usually he can hear me coming and I can hear him going at the same time. And it's just a game of cat and mouse. But there's this one noise that for all that time I blamed him for that noise. And I swear to God, he was fucking with me. And just like I think like a year ago, I noticed that that was my door. See, I have a huge uh shoe organizer hanging on this inside of my door. It's something about the the weight of the like the the weight disbursement with the different shoes in there and the way the thing moves when you open the door. It makes that noise that I was blaming him for. And all this time, all the other noises were his, but this one I could not figure out why he was making that noise and where he was in the house and how he could get away from me so quickly. And it turns out it was my damn door. So that is how crazy this shit made me. So don't feel bad if you're out there and you're pulling your hair out and you're ready to hurt stuff because that is what this lifestyle will do to you.

Speaker: 21:07

In my next episode, I have got more about his head, the walls, a window, a closet, and we might even get into some of the kitchen shit that he was doing. And by the way, he's 24 right now, and he's almost 25.

Speaker: 21:23

This month, December, he will be 25. And just last week was the very first time I have ever seen him actually wash his hands. Start to finish, actually wash them, not half-acid or fast forward through the process and accomplish nothing. He actually washed his hands and it was unprompted for extra steps. I could tell he wasn't even sure how much support he had from us because his dad was busy, and I'm the one that, you know, I'm usually always animated and like, oh, great job, very good. I'm so proud of you. But since I've been back from the campground, I've been a lot different. And um, I just don't choose to have that energy output anymore. Um, he is 25, just about, and I'm tired of treating him like he's five. I know that mentally he is a baby, but I'm tired. So I've decided, I mean, it's not even a decision, it's just that my body won't do it anymore. I don't have it anymore to be that enthusiastically supportive all the time, and he's just gonna have to learn to love and accept the quiet support that I give him from here on out. So I was being quiet and I didn't want to say anything because, again, the thing about hindering his progress. If he feels that I'm watching and that I have an opinion, I think it messes him up. I was watching out of the side of my eye, of course, but I was ignoring him and letting him do his own thing. And he kept looking at both of us, but we both had our our eyes averted from him, and I don't think his dad even saw it at all. So he didn't know if we were watching, approving, supporting, or anything. And he didn't know if we were going to tell him, okay, now rinse the soap off of your hands, okay, turn the water off, okay, shake your hands off to flick the water off, and then okay, grab a paper towel or grab a hand towel and dry your hands. He didn't know if we were going to support him that way or not, and we did not, but he did it all by himself. He even lathered his hands, washed his fingers, his nail beds, in between his fingers, the backs of his hands, everything that I've always tried to teach him for the entire time that I have known this child, he acts like he can't do it. But last week, without prompting and without supervision, he did it. And I was so proud of him.

Speaker: 23:48

Now I want to tell you this really awesome story, and I almost missed the entire experience because I almost ignored him. And that's because he said a sequence of words that I include in the Groundhog Day experience. It's just everyday bullshit. You just try to get through it. It's the same as him curling his lips around his teeth and trying to say, I love you. He does that a million times a day to everyone in his path, and you just learn to tune it out, ignore it, and move forward. And I almost did that in this instance, but I'm glad that I caught myself because I got to witness something really cool that has never happened before. So I'm upstairs and I'm making, I'm getting ready to have an afternoon cup of coffee for some reason. I'm upstairs washing my little coffee pot out, and he's sitting on the couch in the living room. He knows what I'm doing, he knows what's gonna happen. He asked me something that made me tell him I'm gonna go have some coffee. And as I was getting ready to walk back downstairs and get my coffee going, he decided to interrupt me and he said, Please remember, his speech is something you have to decipher. So when I say he said this, it's not clear as a bell, just so you know. So he says something like, Will you come and sit by me? And he knew, he knew I was I mean, I had one foot on the stairs, and he says, Will you come and sit by me? And I started to argue. I was like, uh, well, but and he pats the cushion next to him on the couch, and he says, Oh, come on, please? And well, okay, of course I'm gonna go after that. I said, Okay, and I went over there and I, you know, got him in a big like knucklehead hug kind of thing with my arm and just pulled him in for a big hug and started shooting the shit with him, just asking him, How are you doing? And all, you know, just whatever, just making sure that I give him the attention that he asked for. And I sat there with him for a while, and then I rubbed his head and I said, Okay, buddy, I'm gonna go downstairs and have coffee. Would you like to come downstairs with me? And usually he'll say no, but he said, Okay. So he led the way, and we get into the area, and he goes and sits in my dining chair. As soon as he sits down, he breathes a sigh of relief, is what it sounded like. And he was just so chill and happy to be in my space. I do keep it pretty calm and zen down here, so I think he just really needed some of that, and he likes it, apparently. Usually it's like holy water for him because he's a freaking demon, but sometimes he's ready for it, and I think he was ready. He sits down and I start putting my stuff on the table.

Speaker: 26:30

Here comes the groundhog day question: Who's making? And that's how he asks, who's making his next meal? Is it me or his dad? And then he knows whether it's gonna be gourmet or just getting by, right? So I said, because we uh we were still figuring it out, and I was on coffee. I don't know, you know, I wasn't thinking about that. And that is a groundhog day question. It's just like a nervous twitch for him because all he does care about is food. And as soon as he's done with his last meal of the day, he dicks out for the rest of the night on most nights. So this was like, I don't know, two o'clock in the afternoon. It's nowhere near dinner, but he already had lunch. He asked the stupid question, and I said, Oh, you know, I don't know. I think I think your dad's taking care of dinner for you tonight. But he seemed very uneasy with my lack of knowledge and commitment to the answer. And we're not saying anything. And I'm just trying to rack my brain and like, what am I supposed to say right now? I'm not sure what's going on. And then I said, Oh, and I pointed at him very enthusiastically and said, You're having soup tonight, I think. Yeah, I think you're gonna have soup. And he gets excited and he says, Oh, soap. He sounds like soap when he says soup. He got really excited. We got a high five together and we go, yeah. And then I started a happy soup dance. So I've got this weird thing about me. Even if I'm at a party and music is playing, I will suddenly, for no reason, get a different tune in my head and I'll start grooving to whatever's in my head. And people, I've I have caught people catching me do that. I know I'm a weirdo. I know it's completely messed up for the social situation, but I do that. So I did that right then. I got a groove in my head, and I was just like, yeah, soup. And we're just like, yeah, soup. So to paint the picture, I have a long conference table in this area, and that's where my little cooktop is, and that's where I'm making my coffee. So I'm facing that. He is off to my right, about four feet, and slightly behind me. So I have my eyes closed. I'm grooving. I hear him being really happy about the soup and knowing what's coming for his life, and I'm just jamming, and then I open my eyes a little bit after like what seemed like a whole minute or so, and I see out of the corner of my eye, he is standing there, and he likes to say, he likes to start bouncing and tell me I'm dancing, I'm dancing. He's standing there, not telling me that he's dancing. He's got his arms outstretched, kind of behind me, but you know, past me because he's off to the side a little bit. And his head is thrown back a little bit and he's bouncing, and he's 5'10 now, okay? And he's kind of doing some kind of weird zombie dance, but he's making some kind of musical sound come out of his mouth. So we watch a lot of symphony and classical music and stuff on TV. When the grandfather isn't there watching TV and we're preparing food or doing anything, we'll bring up like uh the symphony playing Spider-Man or, you know, stuff like that. So he's got music in his head a lot. Plus, he loves all the show tunes from like the movies, The Lion King, Emperor's New Groove, all that crap. It's all in his head. He's just, he's jamming. I don't know what is in his head, but he's making some kind of noise and he's jamming behind me. So I pretended like I didn't see him because I thought that was so cool. We just jammed together for what seemed like, I don't know, like three minutes because my coffee steeps for four minutes. It was so freaking cool.

Speaker: 29:58

And I almost missed that entire experience because I almost blew him off with the stupid, who's making? You know, serve me, take care of me, blah, blah, blah, blah, me, me, me, me. I get really tired of that sometimes when I'm trying to take care of myself and make myself calm and happy, but I didn't miss it. I didn't write it off. I engaged in conversation with him the best that we could, and that's what came out of it. And then suddenly he does notice me and he stops, right? I stopped too, and after another minute, my coffee was ready and I'm pouring the coffee, and then I sat down with him for a moment, and he was starting to get a little bit weird, a little bit wanting more attention, and you know, just getting antsy and uncomfortable. So I said, you know what? I want to dance again. I want to do the soup dance. You wanna dance? And he says, Yeah. So I stood up, I took the same position that I had before, hoping that it would bring him back into that, and I started grooving. And he tried, he bounced a little bit and then he stopped. But I kept on and he starts making noises with his mouth, and I think he was giving me music because he was watching me and making like a tune come out of his mouth. And it was really neat. I think he was giving me music to dance to. And so when I realized what was happening, I got all giddy, you know, and I turned around and blew my cover again, and I was like, that's really cool, thank you. And then I think he said dancing, so I kept dancing. And then he starts sing humming the theme song for Scooby-Doo. The first line or two, he knows those lines, and he said them the best that he could, sang them the best that he could. And then it started to fall apart, but he kept going, and it was mostly humming, mostly noise making, but humming the tune. And it got so bad. He was trying to use words, but a lot of it was just noise like vowels. But it got so bad that I couldn't tell where he was in the song. And I just was at that point trying to just maintain my smile and continue swaying to the music a little bit because he was in a thing, you know, and I wanted to support him, but I didn't know where he was at in the song, and I I didn't even know at that point that he was still in the song, but I figured he was because he hadn't stopped and changed at all. So I just kept smiling and kept swaying to this music that he was making, and I didn't know where he was, but he knew exactly where he was. And when he was done, he clapped for himself at the end, and he said, Yeah. And I just thought that was really neat. He saw it through all the way to the end. I've never seen him finish that song, and he did, and he got himself all the way through it with no prompting from me because I'm not the one. His dad does that. His dad knows all the words to all the songs. I don't. I think he was just entertaining me, showing off for me, and providing music for me to dance to, which for a child or an adult with severe autism, I think that's a huge thing. It's a huge like milestone or accomplishment on so many different levels because he was so aware and cared enough to provide music for the lady who wanted to dance. You see what I'm saying? It was huge for me. I thought, man, this is awesome, and nobody was here to see it.

Speaker: 33:15

So then later, when he's eating his soup and his sandwich, I was walking through the kitchen and going up to the bathroom. And he was in the dining room, he couldn't even see me. So as I walk through the kitchen, his dad says something to me, like Jacob's eating or something like that. And I said, Oh, that's just wonderful. And immediately, he didn't even see me, okay? But immediately Jacob says, That's just wonderful. Exactly the same as I said it. Totally parroted me. And again, my jaw's on the floor. I'm like, wow, this is so out of the ordinary for him.

Speaker: 33:49

So that's my story, and I hope that it is a little bit motivating because despite all the crap that we've been through with lack of support and his personal choices, everything that's happened with him losing his skills and his speech and everything at the age of 15. Here we are, almost exactly 10 years after he lost everything, and I'm starting to see improvements. I don't know if part of it is because I was gone for quite some time and I came back. Um, I kind of feel that maybe he matured in my absence, which is great because maybe I can go again. I'm just kidding. No, um, as hard as it is to do this life with him, I feel a shred of optimism with that. I don't know how long he will continue to improve, and I don't know how long we will continue to not have resources for him.

Speaker: 34:41

But I think I guess my point is that it really does change every day. And my valuable lesson that I have learned over the last couple of weeks here, since my last episode, is not to take the run-of-the-mill groundhog day bullshit for granted because it might just lead to something major in a good way. Because whether we like it or not, that groundhog day question, who's making, is communication. And he may not even be that concerned with the answer to that question. It might just be the only one that he has to use to seek connection with me, right? Food for thought.

Speaker: 35:20

Holiday season's almost over. I hope you're hanging in there. I hope you've been able to make yourself a nice little private area of beauty that you can enjoy, like I've talked about in some of my other holiday episodes. It's really one of the best things we can do for ourselves to get through all this. And I remind you one more time, I am not a professional in this field at all. I'm just a mom, just like you. But if you do need support, you need a little pick-me-up kind of chat thing, hit me up, send me a message. I always respond. I think about all of you, even though you're all strangers to me. I think about all of you every holiday season, no matter what the time of year, because I know how hard this is. I even think about you guys on weekends when there's no school. All the times when school does not help us by taking care of our children for a couple hours. You know, it's rough. I hated those days.

Speaker: 36:10

My heart is with you. You hang in there. You're a superhero.