Behaviors, Coping Strategies, Empathy, Growth and Legislation in Severe Autism Living

The episode highlights the complexities of parenting a child with severe autism, touching on legislation like the Autism Cares Act, personal experiences, and behavioral challenges faced at home. We share humorous anecdotes alongside heartrending truths about navigating daily life, emphasizing the importance of understanding and compassion in our journey.

• Discussion about the Autism Cares Act and its implications 
• Reflection on pulling Jacob from school and observed behaviors 
• Memories from a family trip to Animal Kingdom 
• Managing Jacob's challenging behaviors at home 
• Conversations surrounding animalistic behaviors and coping strategies 
• Using humor to navigate tough situations 
• Moments showcasing Jacob's empathy and growth

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Chapters

• 0:18 Autism Advocacy and Theme Park Adventures
• 12:44 Parenting Challenges With a Troubled Child
• 23:06 Outdoor Discipline for Troubled Child
• 31:28 Challenges of Outdoor Discipline
• 40:16 Empathy and Compassion in Parenting

Transcript

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. Remember, you can always access the transcript to this episode and all the others at psa. buzzsprout. com. You can also find the links to support the podcast buy me a coffee, donate in any capacity or even buy some fanfare through my little shop that I've designed. All those links are in there. You can also find some discount codes for some of the products that have helped us. It's not a long list, but I try to include things when I find them helpful. The most important thing is that you're here and listening and you're sharing this, and I am so grateful to all of you who have been sharing my episodes, just sharing the podcast idea in general. I think that's a really great way to get more attention for our little marginalized community here.

Shannon Chamberlin: 1:07

I recently started an Instagram account for the podcast and through starting that, I've been following other organizations that have to do with severe autism. I wanted to share this with you. It's something that I found a few weeks ago on there. I just keep forgetting. It's called the Autism Cares Act and, to be honest, I didn't know about it at all. I'm not much of an activist. I'm just doing this podcast, as you know... I mentioned it a long time ago... just because our experience is so horrific in this world and I want to share that with the world and let everyone know that this is bullshit, the way that we have to live, and I'm not actually an activist or anything like that, so I'm not aware of things like this all the time.

Shannon Chamberlin: 1:46

But this is called the Autism Cares Act. Apparently, it started about 18 or 20 years ago and it seems like it has to be renewed every year through Congress and the President. I was not aware of any of this, so I saw a post about it. Now I will say that I have been really unhappy loudly unhappy with the Autism Speaks organization. I never saw them giving any attention to kids like ours who are really, really suffering. You know, they just Autism Speaks. All of these autism organizations I mentioned a long time ago in my first episode seem like a bunch of bullshit to me, because they all glorify this other autism that I am not familiar with. I mean, you know what I mean. So, anyway, I left a comment on this Autism Cares Act post of 2024. So I guess they just passed it and now it's going to be in effect for 2025. I guess that's how it works, but I said it would be really great if this would do something for profound or severe autism. And the person replied and said the Autism Cares Act of 2024 will help address the needs of those with profound autism. The bill actually includes a new enhancement that Autism Speaks advocated for that calls for greater inclusivity in research activities so that studies reflect the full range of needs of support and services to ensure the physical safety and well-being of all autistic people. So, yeah, that's great. I responded to that person that that's a great start. Oh, thanks for finally including us in the research. Oh, whatever, I mean, things move so slowly at the legal level. I don't know. It's almost. It's just like a nod to severe autism in my opinion. So I just wanted to share that. I guess it's good news.

Shannon Chamberlin: 3:38

I've been looking back, I've been finding records and looking into things and I've realized that our son was actually 16 before he got into the therapies and everything. So I know I've said my timeline is skewed and I don't really know which way is up. All I know is what we've been through and it seemed like a whirlwind, and it still does. So there's a lot of things that happened before he actually got into the therapies I mentioned in my last few episodes. I'm just going to be trying to mix everything in at once because I've been promising I'll tell you about this therapy stuff, even though it's actually chronologically not supposed to be coming up yet. But what does it matter? I first want to get into some of the behaviors we were experiencing. I'd like to preface all of this with I don't think that it's because we pulled him out of school. I think that this stuff was already either happening or just under the surface and we just were not spending enough time with him because of the amount of time he was spending in school. I really think that this was happening inevitably and I feel grateful that we did pull him out of school and have him at home with us so that we could see it. Because I really don't trust the educators, based on our experience with them in the past. I just don't trust them to give us the details or, you know, honestly, tell us, just like I don't trust family, when something happens, to tell me the truth, because we've been there, done that and it didn't work out. So I just first want to illustrate the tenacity of this child.

Shannon Chamberlin: 5:09

When he was 10, we managed to organize a trip to Orlando. We took the grandfather with us to allow us time to go on the big boy rides and he could watch Jacob. You know, we just thought it would be a lot easier as long as we're all together in the park. Who cares? So we did not actually go to Disney World, we went to Animal Kingdom, jacob's favorite thing of all the Universal Studios, and attached to that is the Islands of Adventure. This was when he was still pretty easy to deal with. I mean, I learned later on that he was not easy, but he's. It's all I knew. So for me he was okay. He didn't cry the whole time like he did the first time we all went to the zoo together. So I think we did pretty good. We got to the front of the line because of the autism. We told everyone he's special needs and we didn't have to wait in lines. It was great. He had a really good time.

Shannon Chamberlin: 6:00

Some of the rides he was really interested in were shut down, but he did okay. He did obsess. I think it was a Batman ride that was shut down and he was really excited to do it and he was pretty obsessed about it for the few days that we were there. So we had to keep redirecting him and at the time I didn't even know redirecting was a thing. I didn't even know that term. This is how green I was to all of this and we did our best to keep him happy.

Shannon Chamberlin: 6:24

But one of the last things we did was a T-Rex ride, and he loves T-Rex, he loves all of this stuff we did. Twister scared the hell out of him. He did not like that very much. We did a Shrek 3D thing and he didn't really like that either. He cried at everything, but he at least went to them. He didn't like the mummy the ride, but after it that's all he would talk about is mummy the ride. It was scary. So all of these things scared the hell out of him, but it's what he likes. And I don't know and I think now that I just said that out loud, I wonder if that plays a part in later on his behaviors doing the negative attention seeking, stuffeking stuff. I don't know, man, I really think I just had an epiphany there.

Shannon Chamberlin: 7:08

Anyhow, we're all on this dinosaur ride. It's a T-Rex and you go through the jungle, dinosaurs are coming down at you through the brush and everything. Then it's like a big Splashwater Falls kind of thing where you're getting ready to go down this big splashy ride and here comes T-Rex, right above your little boat. His open mouth comes down like he's going to just pick you right up out of the boat. And that ride, that part of that ride, scared the living hell out of Jacob. He was actually afraid that we went down. You know, the thing just keeps going, it doesn't stop and let you get eaten. You just go down this big splashy thing and he was so disappointed in himself. At the end we were ready to console him. And you know crap, this is really bad. He's crying, he's really upset. Okay, let's go. You know, go go, gadget parents. And we thought we were going to have to just really dedicate ourselves to fixing this. But he turned it around and he was like he didn't say it but he said I want to go again. And he actually did this ride, I think at least three times. I'm pretty sure we did it three times. It might have been four, but he wanted to do it again.

Shannon Chamberlin: 8:18

He could not believe that he got scared by a ride that he knows is fake. I've always told him he would get worked up about a movie or a game, about some bad part in it, and I would always tell him it's not real, it's fake. Just stop. You know it's not, it's not real. None of this is real, it's fake. And that's something I've had to really emphasize all this time because he thinks that all of that stuff is reality and he tries to live that fake stuff on me.

Shannon Chamberlin: 8:49

You can see him like in his mind he's watching a video game and you can see it on his face. His eyes are all googly and he is not paying attention to where you are or where he's at. He is somewhere else and he's like playing some weird Mario Brothers or something in his head. The reason I figured that out is because he would start jumping with this googly face and this lack of awareness for his surroundings all of a sudden and then he would view me as one of those big green stacks where Mario has to jump up and over and all that stuff, with the bricks in between and stuff has to jump up and over and all that stuff and with the bricks in between and stuff. I swear to God, that's what he was doing, because he tried to jump on my head as I was standing on my feet in front of him. He was jumping closer and closer to me and looking at the top of my head with this weird, weird look and he would get higher and higher and he actually tried to get on top of me with his feet several times.

Shannon Chamberlin: 9:46

And it's very important to me that he understands that this shit is not real, like when he used to try to throw people's cats at the wall, thinking that it was going to just stick like a cartoon. Even though I didn't tell him, he just seemed to remember that, yeah, she's right, this is not real. It's clearly not real. He was so mad at himself I could just tell and he you know, he's just like oh, I got to go again. And so we went again and he knew it was coming and he still got scared and he still screamed and he still cried. But he caught himself faster and you could see it on him. He was like damn, you know, it got me again. So we got off and we're like okay, is this better? He's like no, I got to go again. I just reminding you, he doesn't actually say these words Okay, it's communication that we have as a family. So we get back and we're like, hey, he needs to do it again and we, you know, get back to the front of the line and we do it again. It was three or four times he did get scared. Every single time. They did that well on this ride. I don't know how, but he just never saw it coming. Every single time. They hide that T-Rex really well in those bushes. But he finally was satisfied with his performance, I guess on the level of fright that he showed.

Shannon Chamberlin: 11:03

We went in the gift shop or whatever that was. There was a big dinosaur there and we wanted to take his picture and you could just see like he's done. It's all over his face. I'm going to try to post this picture because I'm making a lot of posts now on Instagram, which will be on Facebook and stuff. So there will be some pictures of this event coming up soon. So just watch my socials if you're interested in seeing these things. But it's all over his face. You could just tell he is done and that was the last thing we did that day. He could barely even get through his burger when we went to eat. That poor kid, but he tried so hard.

Shannon Chamberlin: 11:39

I just wanted to tell that story to illustrate his tenacity, because that same amount of dedication was put into torturing me later on in life. It's the same, the same amount of dedication. He took that and applied it to all of the stuff that he started doing to me. In our house in Wisconsin we had two separate living rooms with fireplaces and stuff, so the furthest one became my office. That is where I would have to sit and do all my planning, all the business meetings with my spouse and all the connecting with businesses. It was all telephone work and computer work and that kind of stuff. Just outside the doorway of my office were stairs that go up to the bedrooms. Then if you just walk past the stairs you're walking into the rest of the house and second living room and garage. So my office was as far from the TV in the house as you could possibly get on the main floor. So I thought, well, this will be great, I'll just be secluded. There was no locking door or anything, but I never had a problem with Jacob interrupting me during work. So I thought this will be great.

Shannon Chamberlin: 12:44

And once he got pulled out of school actually these behaviors started during school and I think it's because of the way he was being treated. You know, but I could be wrong. Maybe this was just all coming to the surface, it was all inside him anyway, I don't know. I noticed it increase, of course, when he was home with me all the time and I only had certain hours that I would do it. I didn't make him sit around and not have me involved with him all day. I did it during his nap time, during his activity time, if I let him watch a movie, and then I had evening hours after dinner, you know. So I had it all worked out. Everything was fine and I would usually work between the hours of nine to one and four to eight, but constantly taking breaks and taking care of him. It was a weird, it's hard to explain, but it worked.

Shannon Chamberlin: 13:30

He started getting to the point where he would come in my office and just mess with me and he would just be mean to me and angry, and I would try to give him everything he wanted and just try to appease him. I didn't want to spoil him, I just needed him to control himself and be good. I had to get this work done, so I had plenty of stuff to keep him busy, plenty of meals made up, I had plenty of snacks made up, I had that magnetic sand, I had activities, you know, coloring, movie, everything and he would not take the time and do any kind of relaxing and leave me alone. He would just come in there and start kind of yelling while I was on the phone. So I ended up having to hang up the phone and then he would just yell at me and I would ask him if he would do this, this, this, this or that, and he would say no to everything and I would tell him that he had to leave. I would just say go, do this.

Shannon Chamberlin: 14:23

And I will say that when the grandfather was there, this behavior was much worse and I kind of feel like he is performing for the extra people that he feels don't belong there. I know that's a weird thing to say, but I really I feel like he's just showing his feathers when the rest of the family members are around. Yes, he tortured me when the grandfather wasn't there, but it really was louder and more of a show when there were extra people in the house. I'm just saying he would start standing outside my office door. I would tell him or place him somewhere and set him up and make sure that he could be happy and tell him I have to go and do this work and he would go into my office and then leave my office and pretend to go upstairs, but he would just stand on those stairs on the other side of the wall and he would start screaming. He's actually restarted this behavior lately, which sucks.

Shannon Chamberlin: 15:16

He was dead set on these high-pitched screaming noises and whining and he also has this voice kind of like Janis Joplin. I mean it's more like if you've ever seen a demon movie and someone's possessed and they have like seven vocal cords working at once and that's what he sounds like and I absolutely hate it. I cannot stand this damn noise that he makes and he will sit there and do it on the other side of the wall while I'm trying to think and work and talk to people and make money. You know it was just torture and I would have to stop working again and leave and as soon as I would leave my office and see him on the stairs, he would run up the stairs and then I would go upstairs after him and put him in his room. He was already in his room and I would just kindly explain to him hey, why don't you just stay here? I have a little bit of work to do. Do you want to lay down? Do you want to take a bath? No, no, no, no, no. And I asked him to please give me just a little bit of time. I just have some phone calls to make.

Shannon Chamberlin: 16:18

These things would not go very smoothly, these talks. Every once in a while he would be reasonable, but for the most part he was just unbearable. He would not agree to be good. But I would tell him I need you to stay here, I need you to be good, I need you to be quiet. And I would close his bedroom door no-transcript, very heated, I would, you know, rah, rah, rah.

Shannon Chamberlin: 17:00

And then close the door and he would jump up from his bed as I was walking down the hall back towards the stairs, and he would chase me with his hands up in the air, flapping, but he was so close to my back and the back of my head that I could feel my hair moving from him and he would flap and chong, and we call it chonging, because he'll go chong chong, chong, chong, chong, chong, chong, you know. And so I'm like oh, he's chonging again. And that's when he's really angry. And he's right up against my back as I'm walking, flapping his arms all around and chonging, and when he's chonging he's not even looking, his eyes are rolled up in his head. It's possessed stuff, I'm telling you. And I wouldn't turn around, I wouldn't flinch, I wouldn't look back or nothing, I would just go.

Shannon Chamberlin: 17:48

And he would sometimes stop at the stairs and let me go down the stairs and work his way back and start again. But sometimes he would chase me down the stairs and I was so afraid that he was going to slip and push me down the stairs. I absolutely hated it, but I couldn't get him to stop. He used to be able to take naps and I had a nap time for him for one to two hours and he just would not lay down anymore. I would put him down for a nap and he would chase me back down the hall very, very close to me again and chonging. I just could not win with this kid. He would just. I don't know if he was trying to scare me or if he was just really mad, I don't know. But he never did hurt me at that point. Later on he did, but during this he didn't. But it was freaky, you know, and I started really getting freaked out.

Shannon Chamberlin: 18:35

And then, after he started that, not much time went by and he started to change and add more stuff to this cocktail of abuse that I would have to endure and he started howling and just acting like an animal. That's all I can say. He would bare his teeth and make them like fangs and kind of like that scream mask, but he would take a weird posture with his body and I don't know. He was like a werewolf, I think is what he was trying to do. Other times he would be like a dog, I don't know, but it was really animalistic and he would howl and stuff that, in addition to the screams and the whines and the demon vocal cords, and he would do this to me almost all day.

Shannon Chamberlin: 19:16

If he was not really occupied with something which was, I mean, nothing keeps his attention, he would just torture me all day long and sometimes the grandfather would be there and I would see him standing over there, just standing over there watching this, and I didn't make eye contact with him and I didn't. I mean, a little part of me was like I wish he would just help me. But on the other hand, I was like, what's he going to do? I'm not. I can't really be mad at him because nobody knows what to do with this. This is bullshit. Why would he know what to do if I don't know what to do?

Shannon Chamberlin: 19:46

I live with this kid. You know I can't expect him, but I would really appreciate it if he wouldn't just stand there and ogle at it. You know, I feel like he's just entertained and it's really annoying. But anyway, this was seen by another family member, but my spouse was never home when this happened. So anyway, he keeps acting like an animal towards me, just towards me, not just in general, not just around the house, you know, just towards me directly. I'm trying to keep our house afloat, I'm trying to keep us in business, and it was really, really distracting.

Shannon Chamberlin: 20:18

I felt like I had to defend myself all the time. There was a meme right around that time that came out right around the time that this all was going on, calm with him, and I'm so trying to just deal with him and reason with him and treat him well, show him how I want him to be towards me, and he would fight me every step of the way and I would, you know, just do the best I could and go back in my office and get down underneath my desk and just throw middle fingers. You know, just throw middle fingers towards him where he couldn't see me. I was so mad at this kid and I just had no outlet. I had no way I couldn't tell him. There's no way to express the anger and rage and disgust that I was feeling from the abuse that I was enduring every single day of my life, while I was taking care of someone who didn't give a shit if I took care of them or not, and I had to be so nice to him all the time, and I had to be so nice to everybody on the phone all the time. I had to be nice to the family that came and ate all my food and spent all my money all the time. I had to be nice and I would just go under my desk and just throw middle fingers towards my son in the other room. Then a meme came out and it was somebody being mad at their boss and being in their office and just throwing middle fingers, and it made me laugh so hard. So I totally had just done that and here comes a meme about me.

Shannon Chamberlin: 21:56

The other thing that came to my attention right around that time and it was perfect timing as well, because I was having trouble with him doing the naps all of a sudden which had been a thing ever since I came around. This kid's been taking naps and it's been a godsend for us to get parent stuff done. And now all of a sudden he's jumping out of bed and chonging at my back of my head. Just would not take a nap. This had been going on for a while and then suddenly here comes a video of Jennifer Garner reading a book called Go the Fuck to Sleep, and I just loved that book. I watched that video constantly back then. It was so funny and it's so nice to, even though she wasn't talking about autism, it was just a book about a kid who will not go the fuck to sleep, and it was perfect for me. So it's really nice to be able to find things that shed a humorous light on what you're going through, when what you're going through is so damn dark. So if you haven't seen that and you're having trouble with your kid going to sleep, you should totally search for that on YouTube. Thankfully I don't have that feeling anymore, so things have gotten better.

Shannon Chamberlin: 23:06

But back to the animalistic behaviors. I finally told him because, as you know, I am in the practice of telling him how I feel when he does XYZ and I told him that hurts my head, I told him all the ways that it makes me feel and he didn't care. He just kept doing it. And then I told him if you are going to act like a dog, I'm going to put you outside, like I put the dog outside. You want to act like an animal? You're going to go outside where the animals live, do you understand? And it got such a weird look from him he was like it was incomprehensible that I would even say something like that. And I think that he understood exactly the illustration that I was giving. But he didn't realize that that was like a thing that I would even think of. It kind of shocked him, you know, and it worked for a while. He would do it every day and when he did it I would say I'm going to put you outside. I was just talking shit, I didn't mean it.

Shannon Chamberlin: 24:04

Eventually it stopped working and he didn't believe me because I didn't do it and I put his ass outside? I sure did. I put him outside side. I said come here, you're acting like an animal. What are you? Werewolf or whatever it was, you know? I said, all right, let's go. He didn't believe me. So I stepped outside and kept my hand on the door and had him come outside and I told him you're going to stay out here until you can stop acting like a dog. He started arguing, you know, with whining and noises and stuff, and I just went inside and closed the door. I stood there and he came right in and I said are you done acting like an animal? He said no. I said then get outside. And he went.

Shannon Chamberlin: 24:42

That became a thing. The more I had to send him outside, the worse he would actually act. So I just I don't know. I didn't know what to do. I was home alone and I wasn't afraid of him running away because I was standing right there watching him and where's he going to go? 50 acres, I can catch him, no problem. You know he's not going to jump on the four wheeler, but I can and I can go get him. You know, I wasn't afraid at all, but I needed him to understand that this was unacceptable and that there were consequences and I couldn't think of anything. There was nothing to take away from him. He didn't like anything. There was just nothing. He didn't what. What are you going to do? So I put him outside.

Shannon Chamberlin: 25:20

Eventually he became more abusive and he would come back in and just want to chong in my face and it was terrible. I can't even describe how terrible it was, and he hadn't hurt me yet, but it was psychologically damaging it was. My nervous system was completely shot and I couldn't deal with it. You can't act like that in my house. I'm sorry, you just can't. You know there was no other way to control him.

Shannon Chamberlin: 25:44

But eventually he started getting more and more out of hand. The go outside exchange started to get more and more heated and now, mind you, he's like 5'8", 5'10" and I'm less than 5'4". It wasn't working out. One day it got so bad, and it stayed this bad for every day afterwards. But it got so bad that I threw him out of the house. I told him you will stay outside until you can behave.

Shannon Chamberlin: 26:09

And his dad was actually home that day too, and I told his dad what I was going to do, because even his dad couldn't handle it. There was nothing we could do to stop him from what he was doing. Of course I keep him updated, I tell him everything. Hey, I threatened to throw the kid outside today and then, hey, I threw the kid outside today. You know, this was just the natural progression of things. And I said well, daddy, I'm going to put his ass outside If he keeps acting like this. If you do you have an answer? Is there something that you think we should do? He's like I don't know.

Shannon Chamberlin: 26:36

And he just got worse and worse and worse. And I said get outside. And I put him the fuck outside and I locked the door because he came right after me and pushed the door into me and I said, no, get outside. And I closed the door and I locked it and he was trying to get in like Fred Flintstone, beating on that door, screaming, and I said through the door no, no, you cannot come in the house like that. You have to calm down. You want to yell and scream. You're going to stay outside with your outside voice. When you can use an inside voice or a hunting voice, you can come back in the house. And he just wouldn't. So he goes over to the nearest window, puts his face up to it and starts screaming. And then he goes to the next window and just screams. And he just did that all around.

Shannon Chamberlin: 27:20

He did all the main floor windows first and then he went and chased all the second floor windows and he went to every single one and we were watching him through each window just to keep an eye on him and make sure he didn't get hurt or do something stupid. So we're watching him, but he couldn't see us that we knew of. He could see us in some of the rooms and that's why he would put his face on there and scream. But well then we wanted to go upstairs and get a bird's eye view and make sure that we knew what was around, and you know we could just keep an eye on everything and him so surroundings are safe. He actually, he didn't see us downstairs anymore. Maybe he figured that we went up, but he went to all the upstairs windows and started looking in and just screaming and I knew he couldn't see us. And then at one point I thought he did see me and I was like, oh no, he saw me. So now it's become a game to us and he's just out there working it out, but that actually became a thing, believe it or not.

Shannon Chamberlin: 28:15

I had to throw him outside because he was acting like an animal and that was the only way that I knew that to teach him. I don't have any help, you know, and he has no, nothing, no input from anyone. He's on this waiting list. Still it hasn't been funded, he's not getting anything and I don't think that school is going to help, you know. So I know it sounds terrible, but that's what I did. I had to because I, you know, I was honestly afraid that he was going to hurt me or himself in the house. It's a lot safer outside. There was just grass. There was nowhere he could go.

Shannon Chamberlin: 28:49

There was another time, a very memorable time of me having to put him outside, actually a couple different times. Another time that I did it, it was a beautiful day, beautiful day outside, and I put him outside. I had to get some stuff done and I actually had clients calling me and I couldn't deal with them. You know he wouldn't let me work. So I put him outside and I could watch him, because he's just going to go right in front of my window, right in front of my office. It was almost like he was in the same room but at least there was a window and a wall there and it significantly reduced the noise and the stress just by putting him on a different side of the house and I could still see him.

Shannon Chamberlin: 29:26

But he went right over in this beautiful part of the yard. It was real, real nice and like mossy, and it was just beautiful. He just went right over there, turned around, looking straight in my office window window they're big, big windows and he just dropped to his knees and screamed at the top of his lungs. I know the neighbors I mean the neighbors were far away. We had no neighbors that we could see, but you could hear them because there was water around and the noise travels easy and I know they all are.

Shannon Chamberlin: 29:56

I mean, and this happened all the time, whether he was locked out or whether he was with us and just trying to fight me outside, he was constantly screaming and I felt really bad and I felt like, geez man, is anyone going to like come over here and see that, whether something's wrong? I mean, these screams are bad, you know, and he's looking me straight in the face and just screaming on his knees in my yard on a beautiful day, it was beautiful outside. It was so sad and I just remember him doing that and he just he screamed right there for a really long time, a long time I don't even know how long it was, but he just sat there and screamed constantly and I think that was how he was trying to get back at me for putting him outside. So these are the types of things that we had mostly I had to deal with while waiting for services to become available for him. This went on for what? Like a year and a half. This went on the whole time that he was home out of school and it continued after that. But I mean, I dealt with this without help for a year and a half before he finally got services. So for that whole year and a half I talked to that lady at the state level that I told you about and I, you know I would call her, she would call me and I was just trying to make waves and make an impression and show her how miserable I am. And she could hear him while I was talking. I didn't talk in front of him and let him hear me say anything about him, but she could hear him, she knew. She knew I needed help and there was just nothing that we could do.

Shannon Chamberlin: 31:28

Another thing that I remember about having to put him outside was during the winter. I had to put him outside again, and this takes some doing. It was really strange. I think maybe he was just used to it by this point, but I had to get him dressed. I couldn't, I can't, stick him outside, you know. So this means snow pants and snow boots. I mean, this is deliberate, right, and so I somehow figured out a way, and I think his dad was with me the first time. We did this one too. Maybe that's how we figured it out together, but we figured out a way to endure the torture.

Shannon Chamberlin: 32:00

Now see, in my eyes, these were not meltdowns. I wasn't familiar with what a meltdown really was. I never had actually been trained on any of that but I really don't believe it was a meltdown. This was deliberate. He is very deliberate, and I do now know the difference between a meltdown and an asshole, and I think he was just being an asshole and I think he deserved to be put outside. There was no other way for us to survive it. Just saying, I was not being insensitive. There is a difference and this was not something that he was not in control of.

Shannon Chamberlin: 32:34

I guess I'll say it that way he makes his choices, he is very deliberate, and we had to make a choice too. So I said we need to put him outside. And his dad was like oh my gosh, we need to get him dressed and we need to put him outside. So we figured out somehow to get through the can't believe that he let us get him dressed. But I think that he knew that I'm doing things right now that are going to get me put out like a dog, and I know it and I'm just going to. Maybe that's what he wanted. Maybe he wanted to be put out like the dog, you know, completely dressed. I mean pants tucked into his socks, full snowsuit put on boots, hat, gloves, everything Scarf. I mean the whole nine.

Shannon Chamberlin: 33:26

This was the first time we had to do it. We bundled him up and threw him outside and we said, yeah, go out there and work it out, you know, because he loves snow, he loves cold, he just loves that stuff. So you know, look, it's not that bad to get thrown outside. Obviously, you're bored inside and you're torturing us. You know. He just went out there and sat in the snow and he laid on this big snow mound from the snowplow and you know we were like, okay, cool, and he would just lay there in the snow. It was really kind of cute. He doesn't know how to make snow angels. We've tried to teach him, but he would kind of wiggle around in the snow and he was having a good time and he totally forgot that he was trying to make us miserable. So that did work. However, after that first time we might have had to do it one or two more times and he was agreeable.

Shannon Chamberlin: 34:05

But then this one time sticks out in my mind. He went out to that snow mound again and I thought I'll just watch him. He's, you know, he's so cute when he's on the snow mound. I just love watching him in the snow because he just loves it. And we had such great insulated clothing because of where we lived that we weren't worried about him getting wet or cold, so it was really therapeutic for him.

Shannon Chamberlin: 34:26

We thought and I thought, ok, there he goes to his little snow mound. He's going to forget all about being an animal here. And he went there and laid there for a minute and then he sat straight up, got on his knees and roared just just this terrible, terrible roar, and he threw his gloves off. He took something else off too, maybe his beanie cap or something that was under his hood and he started banging his head on the top of this snow hill that was made by a snowplow and those are not soft and I was horrified. At first I was like, wait, did he just do? And then he did it again, holy shit. So I had to run outside and get down here right now, and he wouldn't stop. And he's just beating his head on this frozen hill of snow. I had never, ever seen him do that before, ever on anything, in any situation, ever.

Shannon Chamberlin: 35:23

Then this became normal. I couldn't put him outside anymore because this became his thing. So now he could only go outside if he agreed. I couldn't do it anymore because I couldn't watch him damage his brain like that. And I went out there and checked that snow hill and it wasn't as hard as I thought because he wasn't on the icy side of it. So it was still not ideal, but it wasn't as hard as I had expected it to be. So I was relieved about that. I kind of fell into it a little bit, so it wasn't bad.

Shannon Chamberlin: 35:54

But he kept seeking out surfaces that were harder and harder and he did end up hitting his head on some ice glazed snow. Then he ended up doing it on snow that was barely packed and the only thing underneath it was a sidewalk. Again, I was horrified. You know, I had never seen that before. I have never seen any child do that before ever. I mean, I've seen the kids in his classes. They wear helmets and stuff and I get it, but I've never seen it, like I've never seen him bite himself until the other day, recently. You know, I've never seen anybody do that with their head, unless it was in a movie. I mean, it was just horrific.

Shannon Chamberlin: 36:32

When Spring or Summer came around, he did it again on the concrete, and I was already done putting him outside. You know, I'm not going to do that anymore. I guess I'll have to take him acting like an animal in the house because I'm not going to have him going out there and getting brain damage. So you know, that was over and he was just outside to be outside, you know, and he did it again and this was during a phase where he did nothing but scream. He screamed constantly. We would say. At this point we were like do you want to go outside? Do you need to go outside, you know? And if he made the decision to go outside, he just kept banging his head and he starts banging his head on the concrete all the time. And I just started taking him to the ER. I didn't know what to do, like there's something wrong with him and I need to make sure he's not bleeding in his brain. What the fuck is going on with this kid?

Shannon Chamberlin: 37:24

This is when I found out that if I crack my truck window, you know, just about a half inch to an inch it would stop him from screaming. It would stop him from everything If he wasn't screaming. He was just obsessively repeating my name all day long Shendell, shendell, shendell, shendell, shendell, rosie, rosie, shendell, shendell, shendell, shendell, shendell. I mean nonstop. There was no break. He would latch onto some sound and he would just hammer me with it. So every time I'm driving him to the ER, and that's all I would get. We're at home, and that's all I would get. We were in the waiting room and that's all I would get. He just never stopped. He didn't even take a breath. He just kept hammering me with this stuff and I'm bringing him to get evaluated like three times a week at this point because he keeps hitting his head and if he didn't hit his head, his behavior was so weird I thought maybe something was wrong with him. It was really, really bad.

Shannon Chamberlin: 38:21

There's a lot more to this story. I have to stop now because I again run out of time. I have to go do this mom thing. He was having a thing and I gave him extra cannabis medicine and I told him because today's pizza day and it's very out of character for him to act crazy on pizza day I told him I will take your pizza away. You need to control yourself and make good choices. So those two terms still work very well. As soon as I say control yourself, it's almost as if he had been hypnotized in the past to when he hears that term, he closes his eyes, resets and takes a deep breath, because that every single time I say that that's what he does. So those things still work and I did get him really high with his cannabis today because I'm just not in the mood.

Shannon Chamberlin: 39:11

But I wanted to tell you the past two days I have been having a hard time. You know I just I'm very busy. I have a lot of irons in the fire and it's all around this lifestyle change, around this podcast and the change that I'm trying to create in the world for people like us. So I do. I have a lot of irons in the fire and I feel very alone. I would try to call some kind of you know, therapy or something, but the state has taken away my insurance and they're making it hard for me to get it back and they're all telling me the wrong stuff. So I'm having that much of a hard time right now. I'm going to be fine. I'm just having a hard time right now because I do feel very alone, because all of the things that I'm trying to do, only I know how to do them and I have no help. So everything is on my shoulders and the things around here are not the way that I need them to be yet and we're still having trouble with this transition of me taking over. Everything is just chaos. So I've been having a very hard time the past few days. Today would be day three.

Shannon Chamberlin: 40:16

So the two days before today, thursday and Friday, I've been kind of down in the dumps and Jacob's been picking up on it. Even though I'm not crying, I'm not pouting, I'm always putting on a happy face around him. I'm never directing my sadness or anger or rage or disappointment towards him. I'm processing those feelings on my own and I treat him exactly with the respect that he deserves as a human being. And I'm processing those feelings on my own and I treat him exactly with the respect that he deserves as a human being and I'm very nice to him.

Shannon Chamberlin: 40:43

There's no reason for him to always ask me these things, but he has been really making a little bit of a breakthrough in speech by kind of babysitting me and he's just been asking me are you okay? And a lot of times that's just because, like, if you burp in front of Tweedledum, he'll be like, yeah, okay. And you know so Jacob picks up on things that people say all the time and then he'll use them, even out of context, he'll just say them. So a lot of times that's what it is. But this is actually directed towards my energy and he's just asking me are you okay? And I was honest with him. You know I don't lie to him. Sometimes I do, but most of the time I'll be honest and I said the other day I'm just a little sad, but I'm all right, you know.

Shannon Chamberlin: 41:24

And then yesterday he sat down with me on the couch. He wanted to watch Blippi, blippi. You guys, if you haven't checked the show out, you got to. He loves the show. It's a really nice pacifier right now. But he sat down to watch Blippi and instead of watching Blippi he watched me. And he kept asking me are you okay, are you sad? And after a while we were just sitting there watching TV.

Shannon Chamberlin: 41:45

I was smiling and watching the show, I wasn't actually feeling sad at the moment, but he said oh, come here, rose, and he put his arm around me and gave me a hug. He said I know you're sad, it's be okay. I just, you know, every once in a while you're just proud. I'm just proud of him right now for being, you know, so compassionate and empathetic and using words and emotions in the right circumstance, and I just thought that was really awesome. So I think that's where I'll leave it today and I've got to go now, but I promise my next episode is going to start out with the experiences that we began to have around therapy and options that were available to him. So I think that you know Jacob's message is for everybody out there in our position. If you're in this boat with us, jacob wants you to know. He knows you're sad and he says just be okay, you hang in there, you're a superhero.