EP.74: What Soundtrack Does Your Severe Autism Child Live To?

We pause the summer saga to share what’s been blocking us: relentless environmental triggers, family drop‑ins, and a birthday derailed by overstimulation. We draw a hard line on media, lock doors during the 20‑minute adjustment window, and lean on body‑based tools to bring the baseline down.

• why the home soundtrack drives meltdowns
• a betrayal trigger and weeks of fallout
• birthday routines, arcade overload, and damage control
• the 20‑minute medication window 
• boundaries with relatives 
• kitchen dynamics and how roles change behavior
• small wins in speech and humor that keep us going
• vibration plate, B complex, and red light for calm

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Chapters

• 0:00 Why This Update Matters
• 0:45 Support, Sharing, And Paying It Forward
• 1:32 Triggers At Home: Grandpa’s TV
• 4:50 King Kong And Emotional Fallout
• 7:58 Birthday Plans Derail At The Arcade
• 11:03 Lock The Door: Morning Survival Window
• 14:15 Kitchen Battles And Marital Strain
• 16:15 Boundaries With Family And Media
• 18:34 Small Wins, Humor, And Calming Tools
• 22:15 Vibration Plate, Red Light, Next Steps

Transcript

SHANNON CHAMBERLIN: 0:17

Hello and welcome to the Parenting Severe Autism Podcast. I am your host, Shannon Chamberlin. I'm so happy that you're here with me today. This is not a regular episode. I'm still talking about parenting severe autism, but I'm taking a break from reliving the summer from hell, and I'm just gonna update with situations that have been going on, and these situations have really been preventing me from even getting my podcast recorded and published on time. Just a quick reminder: if any of my episodes or stories hit home for you, make you laugh, cry, or jump up and down and scream, please consider dropping me a line or even buying me a coffee. You can do that for as little as one dollar, I believe. That will at least help me keep this podcast free for those who need it. And the more generosity this podcast receives from listeners and supporters, the more we'll be able to apply a portion of the proceeds to another severe autism family in need who may not be able to provide their loved one with specific items that are not covered by insurance and waivers, etc. Most importantly, just keep listening and keep sharing these episodes, please.

SHANNON CHAMBERLIN: 1:32

So it seems that we have been having issues with family members inside and outside of the home that have been affecting our son in such a way that he is affecting me and his dad and our nervous systems. I mean, it is absolutely exhausting. Even before his birthday, which was just the other day, we started having issues with the grandfather. And I know this is such an old story. I'm tired of telling it. Everyone is probably tired of hearing it, but the dynamic hasn't changed, and that is that my son gets up out of his bed, comes out of his room, he can turn left and go to the bathroom, or he can turn right and go to the living room. There's only a living room, a dining room, and a kitchen for him. There's really nothing. He's not he's not happy here. We know that, but we try to help him find happiness. However, with the winter months being cold and all that jazz, his grandfather is not outside as often as he usually is during spring, summer, and fall. So the kid gets up and usually finds his grandfather sitting in the chair watching television or sleeping in the chair. And no matter what he's doing, if he's in the house when my kid gets up, my kid's pissed. And he punishes us for it.

SHANNON CHAMBERLIN: 2:50

One of the biggest problems is that when he gets out of bed and finds his grandfather in the house, first of all, our son, I think, feels that he doesn't have any man space to be himself, he doesn't have any privacy, he doesn't have the room that he needs to acclimate. And his meds take about 20 minutes to kick in. So he's got this window of hell. It's amplified by what the grandfather is doing. And on a particular day, a couple weeks ago, the grandfather was watching some kind of war stuff like the Battle of Quezon or something like that. And that's not great. And we have explained this over and over and over. And I even bought the man Bluetooth Connect headphones for the stupid TV so he could watch all the swearing and yelling and screaming and blood and gore and gunshots and everything as loud as he wants to without polluting my son's head. He doesn't use the headphones, he can't even find the headphones now, which is awfully convenient. But he did agree that he would not watch that kind of stuff when my son is at the table. But what we're trying to get him to do, I mean, I even changed his television package to where he can watch all kinds of stuff and stop watching so much war and mob stuff because it's all screaming, violence, and gunshots. And I thought maybe he would find other weird movies that he could watch that might be more Jacob friendly.

SHANNON CHAMBERLIN: 4:10

But see, Jacob sounds like an insane asylum all by himself, and I can't imagine what kind of tragic emotions are stuck inside of him. You should have seen him the other day at the store. Everything's great. He and his dad were at the store getting his favorite foods. His dad turns around and looks at him and sees underneath his silly, happy little Yoda hat that he wears, Jacob had the most pitiful face on him. His oh woe is me look, just like he had been kicked out of the last homeless shelter on Earth. Terrible. And this is what he has living inside of him. He doesn't need any help, being miserable. And whatever he's surrounded by, he is absorbing. There's no question about it. So he wakes up and his grandfather's watching a very loud rendition of a battle and death. And that's what he wakes up to. That's what he lives his life to all day. And that's what he goes to bed hearing as well. The last thing he hears is the same thing he heard in the morning. His grandfather does not let up on the stupid shit that he watches. And so okay, great, he's not listening to it while he's trying to put food in his belly. But there are a whole lot of hours in the day where he's not eating and he has to listen to this background noise of violence, negativity, and gore, drill sergeants yelling at people of how worthless they are. I mean, it sucks. The soundtrack of my son's life absolutely sucks. And there's nothing I can do about it. I've done everything that I can. There is no more.

SHANNON CHAMBERLIN: 5:41

So that was happening, and that gave us about three days of hell with Jacob. And then, even though we thought the grandmother was out of state, all of a sudden we are receiving phone calls about when can the grandmother and the half-sister come over and visit. So they ended up coming over and visiting. I'm just gonna say uh she had the the half-sister had one of her younger children with her, and she's lucky because I have enough respect for children not to call her out on herself. She got away scot-free on that. They visited Jacob for, I don't know, an hour or two hours, brought him gifts that he doesn't care about. He has already indicated that he wants me to throw them in the garbage, which I haven't yet, because they're kind of one's a blanket and one's some kind of stuffed animal, which is the best thing that he's gotten in months from anyone. So I think he's just now, after like three weeks, starting to look into those gifts and maybe touch them once in a while. So that's a good sign. And then within a couple of days of them coming over, he began his sadness routine, crying and telling us how sad he is. And then he stayed up really late one night and we couldn't figure out why, but he just wanted to stay up and watch television with his grandfather. So finally I went to investigate because it was like 9 30 at night and he had no interest in going to bed. Normally he wants to go to bed at like 7 30, and we have to keep him up for another hour. So I was like, what I was just curious what's going on.

SHANNON CHAMBERLIN: 7:20

Well, they're up there watching King Kong at night, right before bed. Actually, during the time he's supposed to be in bed. I don't know if you have listened to a lot of my past episodes, but I have mentioned this before. He's not allowed to watch King Kong. He actually is a very empathetic child, and when he sees the betrayal, he feels it, as if he were King Kong. He loves all of these animals in movies, and the betrayal in that movie affects him for weeks. So yeah, it's a great idea to especially allow him to watch that right before bed and shortly before his birthday. So now we have this sad sack walking around feeling betrayed all the time because he watched this damn movie that he's not supposed to watch, and then his birthday comes.

SHANNON CHAMBERLIN: 8:13

So here we are, again trying to celebrate the most important day of the year with him. Birthdays are huge for my family, and I have made sure that this family understands that importance as well. I mean, if it weren't for your birthday, you wouldn't be here. It's not necessarily about the age, it's just a celebration of your life, and it's your day again, you know? I don't know. In a life like ours, that stuff is kind of important, you know, to have something to celebrate, something to be grateful for, really grateful for, which is the kid that's buried under that autism. So we condition him, we talk about it, we give him his choice. He always decides to go to the arcade. There are not a lot of choices to give. And so we were, you know, building that up. He, of course, has to have a chocolate cake and a yellow cake, but the yellow cake wasn't available at the store, so he only got chocolate, and that was way after he almost ruined the entire day. So we take him, I make him a nice breakfast in the morning, we do our best to have a good morning with him, we take him over to the arcade, and in between the arcade games, we decide we want to walk around the mall. However, he was in a good mood all the way until we stepped into the arcade. And yes, it's overstimulating. Yes, it's loud, it's blinky, it's bright, it's dark, it's all kinds of things all at once. He knows what he's getting into. He's 25. I'm not gonna be responsible for his regulation, but he instantly dicks out there in the arcade, and he will not play a game. He will not be happy. He just is getting worse and worse and worse with every passing minute, just being negative and mean and loud and dangerous. So we decide to put on our happy faces and try to ignore his not happy face and ask him if he would like to take a walk to, you know, just to cool down and get out of that stimulation area. And he agrees, but only because we're leaving and he has no real choice.

SHANNON CHAMBERLIN: 10:11

So we start walking around the mall, and he was a pain, but he was safe until we got to a store that we've been trying to get into for months, and they're never open. It's a weird thing at the mall. Things just aren't open anymore, but it's a new store, and we finally had an opportunity to get in there and look, and it's like a lot of Moroccan lamps and like crystals and all kinds of interesting things like that. And we're in there about 30 seconds, and he starts a full-on pre-meltdown with the big giant steps, the big giant flapping arms, the big booming voice, and not looking where he's going, and we're surrounded by thousands of dollars worth of glass and crystals and shit. That was the final straw for me. So I asked him nicely several times, please stop. You're not gonna do that in here. No, not in here. Stop it. And I got more and more demanding, he got more and more dangerous, and we finally snatched him up by his coat, basically, and carried him out of that store. I lost my cool, you know, I I did. I snatched him up by one of by a piece of his coat, and I said, get the fuck out of here. And I feel bad about that. But seriously, you pick the most dangerous store, and that's where you do your thing?

SHANNON CHAMBERLIN: 11:34

See, I think it's calculated, I think it's on purpose, and I really don't have a lot of forgiveness for this. I don't have the patience. I am not believing that he is out of control, and I think he's just being an asshole. So, I mean, that's my take. H8 me if you want to. I've seen enough. That's kind of where I'm at. This is how I've been affected for the past two and a half weeks, where I can't even get myself to sit down and talk about some of the other stuff that we've been through right now because we're dealing with this. Anyway, we did come home and make him the cake and, you know, try to still save the day and have some nice part of the birthday.

SHANNON CHAMBERLIN: 12:09

The day before his birthday, the half-sister called him on video phone and they talked for quite a while. The grandmother was there too. So he really enjoyed that. And then a few days after his birthday, he came downstairs and he said, I miss. And usually that's where it stops. He'll say things like, I miss, or I'm sad, and I'll say, Why are you sad? And I've taught him, I'm sad because, and that's as far as he can get. I'm not gonna give him the answers, you know. He'll say stuff like, I'm sad because uh, I'm sad because uh, I'm sad because uh, and I'll wait and I'll wait and I'll wait, and then he'll say, Superman or something like that. I'm like, oh, okay, great.

SHANNON CHAMBERLIN: 12:48

So he comes down here and he says, I miss, and we did the same thing. I miss what do you miss? You know, so I waited patiently, and finally he said, I miss Sissy. And I was very happy that he said that. I wish that he didn't miss her, but he did. And that's fine. Um, it's not our fault that she decided to stop talking to him. So I said, Oh, you do, you miss, and I used her name. And then he said, Yes, I miss Bubba, and that's what he called the half-brother. And I said, That kid's name. Like, oh, you miss him? He said yes. And I said, Well, that's very good talking. Thank you for telling me that you miss them. Um, thing is, Sissy said that she would call him back. She had some stuff to do over the next couple days or whatever, and she would call back and she never did. And I think that maybe that has something to do with it.

SHANNON CHAMBERLIN: 13:38

But every day since the day that he woke up to the Battle of Quezon, he has been a nightmare. So that's been about two and a half weeks, and it's just every morning he'll come down here and he just punishes us. I have a new routine in the morning where I'm not available. I lock myself down in a different room. But his dad doesn't have the self-respect to just lock himself away. I mean, the kid doesn't believe in waiting 20 minutes for his meds to work, and I don't believe in subjecting myself to violence or disrespect or stress first thing in the morning. Or at any time, to be honest, I'm done with that.

SHANNON CHAMBERLIN: 14:18

So I'm kind of feeling like, you know, no cooperation from the grandfather because of what he chooses to watch, no cooperation from the outsiders because they choose to pop in and out of his life and not worry about the after effects, and no cooperation between my husband and I because we have different ways of dealing with stuff. And that may not be the right way to think of it, which is another reason I haven't been able to sit down and record an episode. I'm just, I don't know, I'm just overloaded with the stuff that doesn't make any sense. So the kid starts coming down here and his dad's starting to crack the past week. You know, he's just almost crying by the time he stands up to his own son and says, Stop doing this to me.

SHANNON CHAMBERLIN: 15:02

So then I have begun to usher the child back out of the room and locking my door. I mean, that's all you have to do. Lock the damn door, don't let him in until he feels better. Because otherwise, he just runs up and down the stairs, creating more and more anxiety in himself. He starts panting like a dog, not allowing himself to breathe calmly, which enhances the anxiety that he's creating within himself, and it prolongs the entire process of getting adjusted in the morning when the meds kick in. He can actually make it so that the meds don't make a difference. Is that what we want? No, no, it's not. So what's the best thing to do? Well, in our house, it's lock the fucking door. That's all you gotta do. You have 20 minutes. That's it. Just lock the door. Do not allow access. He comes down here, flying down the stairs, screaming and crying and making all these doom voices. And then he tries to get in and he can't. And then he stands there. And then he quietly goes back up the stairs. He might try one or two more times, or he might just give up because he knows that's a locked door, no access. Straighten up. The house is locked down. He's not getting out because we have his shoes. And I know he's not gonna go out there in the winter and you know, barefoot or with his little slippers on and get very far. It just doesn't make sense to not protect your own peace in the morning or in whatever fragile window you have where your child is trying to adjust to his surroundings. I don't know. It doesn't make sense to me. And I'm just gonna lock the damn door every morning. I don't care. I'm done waiting for other people to make the right decisions. There's only one way to go. So that's what I've been dealing with.

SHANNON CHAMBERLIN: 16:39

Sometimes I get excited about his progress with speech, and sometimes I see that there really isn't any progress. So it's a it's a it's kind of a sliding thing right now. I keep thinking he's gonna get his skills back or he'll get more vocabulary back from when he lost it 10 years ago. And there are little instances where I'm very proud. And then there are more instances where I'm just like, oh yeah, it's it's the same. But I do feel like he is maturing energetically. I think he's maybe calming down more during the calm times, and maybe he has more clarity in his thinking. You might remember in the report I read you about his thinking, it said his thinking was scattered and uh illogical or something like he couldn't make sense of anything, and he's at least trying now. The other thing that I've been struggling with is if his dad decides to cook instead of me, the kid still won't give his dad a break. And this is causing a problem in my marriage. So I've asked my husband again to stop cooking. Just stay out of the kitchen, just let me do what I want to do. Don't jump up and get in front of me and say you're gonna cook first. Just let me fucking cook. Because when I'm in the kitchen, that kid does not mess with me ever. Ever. He can sit right. I I know, I've told you this story. He could sit in the other room, look right at me, we can have little silly conversations or whatever, just like we always have, but he doesn't get in my way and he doesn't run his show on repeat. But when his dad's in the kitchen, that's all he does is run his show on repeat, like a skipping record. And by the time my spouse is done cooking and feeding the kid, he comes down here and he's short with me. We fight, and these fights go on for days. And I'm just I can't, I can't do it anymore. So I'm still trying to get a hold of everyone in the household. Everybody has got to take responsibility for their part in this life.

SHANNON CHAMBERLIN: 18:41

I don't know. Does anyone out there have this problem where the kid plays the parents like that, or where other family members don't realize their impact on the kid and they just do whatever the hell they want, no matter how many times you talk to them about it otherwise? Case in point, last night I thought the grandfather was watching a western. All of a sudden I turn around and I see something not western on the TV, and I didn't recognize what it was. I was cooking and stuff, and the kid was pretty entertained and was really not messing with anything else. I I barely knew where he was most of the time, and he was sitting in the chair watching TV. Then it was time to eat, and the television got paused. And I heard our son say, Can I watch? I think is what he was trying to say. And so I went to look at the TV and you know, he's getting ready to sit at the table. Why would he be asking, can I watch? But also that was pretty cool because I haven't heard him say that in a very, very long time. So I looked at the TV and I see it's paused, and I was just getting ready to say, What do you want to watch? But then I saw what was paused and it said King Kong. And I instead of saying, What do you want to watch, buddy? I said, No. It just came out. And then I looked at the grandfather. I said, You guys are watching King Kong? He said, Yeah. I said, right now? He said, yeah. I said, I cannot believe you are watching King Kong again. Why? He says. Let me tell you, I'm done explaining anything to anyone ever in this life. I'm done. I'm over it. I'm not gonna do it. I am turning my back and walking away. That's where I am, energetically in my life. I'm done. So I told him, hey, look, we have talked about this numerous times. I'm not gonna revisit it with you. If you don't know, then that's it. It's over. And I walked away, took my food, I went to eat. And he actually came downstairs about 20 minutes later, asked if he could come in, and then approached me and said, Hey, I had to think about it for a little while, what you were talking about with that movie, but now I have him watching Pee-Wee's Playhouse and he loves it. I said, Thank you.

SHANNON CHAMBERLIN: 20:51

See? See? You don't have to work that hard. They're playing games with you. They're acting like what do they call that? Weaponized incompetence? Guess what? All done. I'm not playing these games with these people anymore. If they want to torture their own family member, go ahead. I they already know the rules. They already know I figured this kid out. I know what makes him tick. I know what makes him happy. If you want to test it constantly, go ahead. I'm done. I've done everything that I can do. The only thing I'm gonna do now is give him the love that I have for him and record and publish my podcast episodes. That's it. I'm done. Did I just give you a glimpse into your future?

SHANNON CHAMBERLIN: 21:32

I want to say one cute thing that happened several weeks ago that was uh happening at the same time, like the instrument and the dancing and all that. Our son was leaving this downstairs area one day, and his dad said to him, Make sure you drink some water. And he says, Okay. And then as the door closes, he says, Well, blah, blah, blah, blah. Mm-hmm. He doesn't say it quite that way. He says, blah, blah, blah. But it was hilarious. Because that's again, he got that from me. Because I say blah, blah, blah, and boring. And so I wonder if he's gonna say that next. But it was so cute. He's, you know, he's definitely got this personality. He's such a trickster, you know, and he's doing well today. I don't know why. There's a thunderstorm today, big thunderstorm today. It's been going on for hours. He's got his headphones, but he's handling it very well. And one thing I think I forgot to tell you about the product and put the link anywhere on my last episode, but I got one of those vibrating plates. It's from LifePro. It's a vibrating plate, and it's supposed to be really good for moving your lymph, which is something I'm very interested in. And also really great for your nervous system and stuff like that. So since our kid loves to jump and he starts getting winded faster these days because he's, you know, not able to exercise as much as he used to be and everything. I thought this would be good for him as well. So this is a family affair. We're all using this vibration plate, and it really does a number on his level of calm. We tried to set it for 15 minutes. He's only able to do about five minutes of it, but it's on varying speeds, and I'll stand in front of him and show him different positions that he can put his body in to get different things to jiggle. He's super skinny, so uh he really has to, you know, work for it. But it keeps him engaged and it's kind of a family fun thing. It's a monkey see, monkey do thing, but it makes him very calm afterwards. You know, it warms him up, it gets him hot, and I gotta cool him down, and then he seems pretty calm for several hours, and I think maybe two five-minute sessions a day is what is working for him, but it's just been a matter of getting him to agree to do it because he's been in such a bad mood with all the outside influences that he just is not agreeable to anything right now. But this morning I finally got him back on. It's been about two and a half or three weeks since the last time I got him on there. He just refused to do it, and it's been really, really great for him today. So I'm gonna put a link down in my links area in my show notes in case you guys need one. Um, I know Christmas has passed and all that stuff, but it's a really good alternative to having a mini trampoline or a rebounder, you know, or just allowing him to jump on the floor. It's better for the joints, it's better for the floor, it's better for his head in case it hits the ceiling. He can just stand on it and wiggle, and it's very calming. I'm also giving him a B complex. So I'm gonna put that down there.

SHANNON CHAMBERLIN: 24:44

\I'm also gonna put the link to the red light. We bought a red light from the same company. It was a really good buy. I've had my eye on a red light for my thyroid for about 10 years, and finally I found one that I thought was worth the money and was a lot less expensive than the smaller ones that are like $700. I finally got one for under $300, and it's also calming. It came with some really some really dark eye protector sunglasses, so our kid is able to be in that red light as well because he wants to look directly at the light, and it's very hard to get him not to, but these glasses really protect your eyes. I'll put a link to that in my show notes as well.

SHANNON CHAMBERLIN: 25:24

And that's about all I have for this episode. In my next episode, we'll start getting back to reliving that summer of hell, our first summer here. There's so much more to tell, and it, like I said, some of the stories are very funny, but they're leading up to something that we felt at the time was very tragic. But everything's okay because here we are. Thank you for listening. Hang in there. You're a superhero.