Parenting Severe Autism
Parenting Severe Autism
EP.38: Exploring Resilience and Gratitude in Severe Autism Parenting
Navigating the intricate world of parenting a child with severe autism can be both challenging and rewarding. As a parent, I've experienced firsthand the profound impact external factors like supermoons can have on his behavior, and the importance of understanding these triggers. Through personal anecdotes, I unveil the struggle of handling well-meaning yet sometimes insensitive comments from family, and how I've empowered Jacob to assert himself in such situations. It's all about finding effective strategies to manage everyday challenges, such as thunderstorms, and teaching our children to navigate through life's unexpected events with strength and confidence.
Engaging with a child who has a deep affinity for media can be a complex endeavor. My journey with Jacob showed me that traditional methods, like cartoon-based social stories, often missed the mark. I share the insights gained from understanding Jacob's unique individuality and the broader implications for educational systems that struggle to accommodate neurodiverse children. We explore the necessity of shifting perspectives to better support these unique minds, while highlighting the humor and lessons learned from Jacob's adventurous spirit, from his innocent "I need sock" incident to his fearless exploration of potentially dangerous situations.
The podcast also touches on the emotional sacrifices and personal dreams often altered when raising a child with severe autism. I invite listeners to reflect on their own narratives, fostering a supportive community where shared stories become a source of solace and mutual strength.
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Hello and welcome to the Parenting Severe Autism Podcast. I am your Shannon Chamberlin. I'm so happy that you're here with me today. For more information about each of these episodes, you can head on over to psabuzzsproutcom, where you'll find the transcript, show notes, contact, email, social media page, coupon codes and merch, as well as a link to support the show, where you can just buy me a coffee for as little as $1, and a portion of the proceeds from that program and from any merch sold will go towards helping other severe autism families in need who may not be able to afford the sensory items, therapy items or specialty foods for their loved one.
Shannon Chamberlin:We're just coming off a full supermoon. How did you guys go with that? Ours was great. Our son decided to scratch the hell out of his face it's probably one of the worst scratch-up jobs that he's ever done to himself followed by banging his head on his favorite door jam repeatedly and very fast. I can't believe how fast he is at that. He's like a woodpecker, but with his head, and he followed that up with some kind of mystery bruise. Probably during the same meltdown. He has this huge, huge bruise. Looks like he got hit with a golf ball on his forearm and he can't even point out what part of the house did that to him. He has no idea. So, yeah, that was great. And as soon as I mentioned in one of my recent episodes about how we'll tell him you can't have pizza if you're not going to be good, and all that, and how he would straighten right up, as soon as I told you guys about that, he stopped responding to that, so that no longer works. I should never have mentioned it, because it used to work like a charm. Now he doesn't care, he'll just do whatever and expect positive results no matter what. So thank God for that supermoon being over, and I can tell you you have 12 months before there's another supermoon. We're always going to have the full moons, but we'll go without a supermoon for a full year, and it's been our experience that the supermoons are even worse than the regular full moons. So I am looking forward to a little bit more calm over the next 12 months of lunar cycles.
Shannon Chamberlin:Anyway, the order of these stories may be a little erratic. It's just because there are certain things that I forget and then I realize them later and I don't want to miss them. So I include them and hopefully we can all keep up with each other here. I wanted to mention I think I mentioned it in one of my other episodes, but since I was talking about our fire pit and us learning about the trauma that our boy went through during those two months that we thought he was safe with family while we were readying his room and the new house and everything, another thing that happened during that time was our son kept whining about I'm not special, I'm not special, and obviously that prompted us to do some digging because yeah, he is special, right, so why is he bothered by that enough to start crying and repeating it? He never had a problem with any of that before.
Shannon Chamberlin:So we learned through our investigations that during the two months he was with the grandparents, when the grandmother was awake and doing things with him, what she was doing was parading him around at church, putting him on display like a zoo animal and telling everyone how special he is. And I think after three to four days a week of hearing that for a couple hours at a time, it probably really started to wear on him and it affected him negatively. So he no longer likes to be referred to as special and it was because of her actions, just her seeking that ego feed from her peers at church. She had to show everyone what a mess he was and what a saint she was for even hanging out with him. You know what I mean. And it just wasn't fair to him.
Shannon Chamberlin:So that was something too, and you may have picked up by now that I am aware that there are a lot of things in this world that we cannot avoid, even if we would like to for our children. There are just things like thunderstorms. You know they're going to happen and he's either going to freak out about them all the time or I'm going to try to help him learn ways to cope with them, and you might remember that I did try to help him cope with storms. He's a lot better at them now than he used to be, and I really believe it's because I try to help him cope in the best way that I can. And he really likes just like most of our kids, he really likes that loud, over the top, overdramatic kind of stuff. So I always taught him to shake his fist at the thunder and lightning and yell if the thunder scared him or the lightning flashed and then there was a big crack or boom if it struck something. I always taught him to just shake his fist and yell back and just tried to give him a sense of empowerment through that, and that's the only thing I really feel that I can do for him with these things that are constant in life and you can't get away from them.
Shannon Chamberlin:So what I taught him about people parading him around like an exhibit and talking about how special he is, if he didn't like it, I told him that he should say he should. I told him basically that he should give him stink face and shake his fist at them and say I'm not special, you're special to the best of his ability and he really likes that. He loves having permission to go off on somebody. I mean, don't we all Right? He loves having permission to go off on somebody. I mean, don't we all right? So that was the thing I taught him about grandmother or anyone else parading him around and saying, oh, he sounds special, look at him. And what they really mean is look at me, look how great I am at his expense. So screw that. Anything that is done at my son's expense I'm going to teach him, to teach them a lesson you can tell it's from me. It's so funny to hear the things that come out of his mouth, even if I'm not trying to train him or teach him something, because he has spent so much time with me in his life that he's basically an echo chamber of me and it is just so funny. The other day he came into the kitchen for something and it was completely out of context, which made it even funnier. But he just came into the kitchen and he said hi or something, and then he goes wow, okay, that's been one of my things lately, I don't know. It's just really funny to me to hear him echoing me and letting me know what he's picking up on During that first year of school this is where I left off in the last episode is the influence of that first year of school.
Shannon Chamberlin:So during that first year of school, aside from dealing with the cigarette smoke in his face and the weirdness of getting off the bus and collapsing into the gravel, these things happened. He came home from school one day and I honestly can't remember if there was an email communication or telephone communication in addition to a note sent home, but somehow it was brought to our attention that our son kept sticking his hands in his pants, as I told you, he loves to pinch the bean right and that's like his security blanket, and he always wore like jogging pants, something with an elastic waistband easy on, easy off, easy on the autism, and it was just his thing. He likes Velcro shoes, sweatpants, jogging pants, easy clothes that are not too tight. You know what I mean. But apparently it was insulting.
Shannon Chamberlin:At school the teacher said oh, he keeps sticking his hand in his pants and I tried to do a social story with him and I want you to do social stories with him. And instantly, I mean I can probably see the look on your face right now, because that's the one I had. Oh, okay, a social story really For this kid. Okay, sure, yeah, he's really concerned with you. Know, the social impact of things, right, but I had never thought of it before and I thought, well, I can't rule it out. Maybe they know something that I don't, maybe I'm being close minded here, maybe I don't understand this kid as well as I think I do, because you know, I've mentioned before people used to ask me how's it going with him, how is it okay, how are you doing being his mom? And these are people that watched him grow up from a baby and I always said well, I know that everyone thinks it's supposed to be hard, but I mean, really, I feel like he's my sole child. You know, we are good, we get along great.
Shannon Chamberlin:I came to realize that a lot of that had to do with his involvement in media. You know, he was always very entertained and in his own little world and I did try to pull him out of it and interact with him, obviously teaching him about you know words and daddy's gone and daddy's home and that kind of thing, and trying to get him to acknowledge the world around him. But I also allowed him a lot of freedom to do YouTube and whatever he wanted to do, because it made him happy. But I was trying to build a business at the same time. So once I realized that, I thought, well, maybe I don't know, maybe it's not as easy, but I was trying to build a business at the same time. So once I realized that, I thought, well, maybe I don't know, maybe it's not as easy as I think, maybe I'm doing it wrong and maybe he's spending too much time. You know, anyway, you can always second guess yourself.
Shannon Chamberlin:However, back to the social story thing. I thought, well, I better try it. So he came home and I said, okay, well, let's have a snack and you can come on in here. And I brought him into the living room there and sat him on the couch and I got on the TV and got on YouTube and tried to find social stories. It was a huge slap in the face when I did this and this was a pivotal moment in parenting for me, because social stories if you go and look on YouTube for social stories they are very much little kiddish, right, and our son is very much a little kid, no matter how big he gets. So I thought, yeah, okay, this is probably right up his alley. I mean, he loves cartoons, he loves Disney, he loves all of these childish things. So he was what like 13 at this point, right. And okay, yeah, let's try this.
Shannon Chamberlin:And you should have seen the look of insult on this child. He was so insulted that I really think that he was insulted, that I thought so little of him. I guess that I would make him watch something. So far beneath him. I was shocked. I really didn't expect that. He threw a fit and he gave me stink face. You know what I mean. So I thought, oh shit, this isn't going right. So, okay, well, let me try to find something else. And I was scrambling, trying to not acknowledge because I didn't want it to get worse this impending meltdown that I thought was going to happen. So I didn't really want to acknowledge it, but I did at least let him know. Okay, you don't have to watch this, give me a minute, bear with me, I will try to find something better.
Shannon Chamberlin:So I found this kid, and Jacob used to call him a little brown boy. That's just the way he does it. Everything has a color. So I cannot find him. I've been looking for days. This was years ago, so I mean, obviously he's grown now, but he was adorable and he wore this little suit and tie and I think he stood in front of a blackboard and he made these cute little videos.
Shannon Chamberlin:I feel like some of them were social stories, but what I was looking for was a human instead of a cartoon character, because I felt like that was what offended our son when I tried to do these social stories with him. I think I did try to read something to him that they sent home, but he didn't care and he's more of a visual YouTube kid anyway. So I find this little boy and he's doing these videos and I tried to make him watch those and he watched it. But he didn't care, he didn't receive a message, he didn't digest any of it, he just appeased me and watched it. And I think the only reason he did it was because it was a real, live, human boy, not a cartoon.
Shannon Chamberlin:I would try to regularly incorporate that kid into our daily television diet. When he would get home from school I would try to find something relatable and have him watch it when he got home. So that didn't work. My instincts were right Social stories are bullshit. They don't work. Maybe they work for some of them, I don't know. But our kid doesn't care about your social stories. He doesn't care about conforming to what you think is right. If he wants to stick his hand in his pants to have a security blanket, then that's what he's going to do. He doesn't mean to offend you. Is it his fault you're offended or is it yours? Who do you think you're educating? Why do you think that he should fit in to the same box as your neurotypical children that you're teaching? Why do you expect him to behave like a 13-year-old.
Shannon Chamberlin:We have done everything that we can think of to introduce you to the child that you're dealing with, speaking to the kids at school, having meetings with the faculty before school was even in session. I mean, we did everything that we could think of. I sent an entire book about him, you know, and they're wanting him to behave like a, like a grown person at this point. And I I was insulted too After, you know, I thought it was just me, I ran it by his dad. When his dad got home and he had the same reaction like, oh okay, a social story, yeah, great, that'll work. And we're not trying to have a negative attitude. It's just that we know our kid and you know, we know he's not going to fit into that, and that's another thing that I'm focusing on in that blueprint that I told you about. I'm really excited about that. I'm going to go into that in a little bit here.
Shannon Chamberlin:I think we need to help our kids do what they naturally are inclined to do. You know Jacob, his spirit, he's raw animal spirit basically, and while he does need to be tamed a little bit, he's definitely never going to fit into the mold that everyone has out there for him. He is not interested. So we're trying to deal with that. And since he was not responding to social stories and he was not responding to verbal cues, and he was just simply not even responding to direct instructions, to stop doing that, don't put your hand in your pants, take your hand out of your pants, leave your pee, pee alone All of that stuff. He was, you know, just like, hey, I'm going to do what I want to do.
Shannon Chamberlin:So our next step was to graduate him from elastic waistbands to pants with belts. So his dad gets one of those and I never understood why, but I let the clothing be between those two, because his dad is a man. He was a boy once and I never wore belts unless they were in fashion with my Z cabarichis or whatever. So I don't have any experience with. What type of underwear are comfortable for a boy? What type of belt is best for a boy? I didn't have any education as far as dexterity and stuff like that.
Shannon Chamberlin:I didn't know how a belt was going to work, but we did know that a belt was going to be needed if we were going to move past this and actually try to get our son some help in school. So I let his dad handle that and he got him one of those little belts with the little little slidey pin. You know, not not a regular belt where you can cinch it up and punch new holes in it and stuff. It was just it had no holes. You just pull it tight and then slide this pin into place and there you go. And you know, I can hardly figure out how to work those things and I was really surprised for all the years that he wore this belt, that that's the belt. You know why. I thought that we would go with maybe something that was like almost a macrame and you just put the little thing in there. You know there's no real holes, you could just put it wherever. And you know, I thought we would do something like that, but we went with the slidey buckle thing and it was the strangest thing to me, but it's what his dad chose and I voiced my concern and my surprise and we stuck with it anyway. So I thought, well, that's between you guys, as long as this isn't the focal point for the next four years of school, then you know, whatever, fine. So cargo pants and this belt, and that was our answer to always having to keep him out of his own pants during school.
Shannon Chamberlin:The next thing we had to overcome was, within the same short amount of time, he got an iPad from the Kiwanis people at the school previous I think I mentioned that he's like the only autistic kid there and they were giving an iPad away to an autistic kid and it just so happened that we got it. So he has this iPad. I allowed him to use the iPad during certain down times, which was pretty much after school. You know you want to come home, have your snack, watch this kid on TV for a minute, if I can get him to do it, and then, yeah, you can play with your iPad while I make your dinner. You know there's not a lot of time after school to do a lot.
Shannon Chamberlin:Well, he starts getting into these terrible sounds and the iPad didn't have headphones or anything. So all I heard was this breaking glass. He loves the sound of breaking glass in videos and that's full blast in the kitchen constantly because, as you know, that's where he hangs out with me when I'm cooking and he's just sitting there listening to this over and over, on full blast and a half, and it's driving me insane. So I get some headphones and I tell him you have to use the headphones. And then he's using the headphones in the same spot in the kitchen with the same amount of volume and I can still hear. And I'm like dude, you're going to blow your ears out, turn it down. I mean he just has'm like dude, you're gonna blow your ears out, turn it down. I mean he just has no regulation of stuff, you know. So that was really annoying, but it did work.
Shannon Chamberlin:I designated an area where he could sit and use it and I could supervise him, because sometimes, depending on what he was watching, he would get real stupid. In our townhouse he used to get on my desktop computer and he found this real asshole guy on YouTube called Alcoholic Spider-Man. I think I might have mentioned that because it was really bad, terrible, terrible. I hope that he's banned or shut down or something. I did the best I could to report him, but back then it wasn't as easy as it is today to report stuff like that. So anyway, I put him in a spot where I could always see him and know what was going on and kind of monitor his emotions at that point depending, and then I might have to pull him off.
Shannon Chamberlin:You know, or give him a new activity is the key term. So we would always have a new activity and he relied on that at school a lot. That's where I got it from. School had his whole day written out on a whiteboard and he would go in and they would have him read what they had written down. He would read the day, the date, the time, the weather. He would do a weather report real quick and he would go through and see how his day was structured. Then he knew that, okay, after this activity that I really love, there's going to be a break and a new activity. So we took that and use it at home. I would just say, okay, time for a new activity. But it doesn't work unless it's mapped out on a board. You can't just throw it at him that it's time for a new activity and I didn't know that. So I learned that real quick and I made it on our whiteboard. I made a little corner of it with different choices for activities and then you can do a new activity. That ended up working pretty good.
Shannon Chamberlin:But then I noticed that, even if the content he was watching wasn't causing him to have meltdowns or get weird at all the length of time that he spent was causing attitude problems after he was done. When would he be done? Whenever I thought that it was time to eat. You know what I mean? I was just I didn't know what to do. So I started having to not only designate an area for him to use the iPad, but I also had to designate times for him to use it. And at school he got iPad for breaks for his new activity and a reward. When I asked them not to use food, they started using technology and they would give him the iPad as a break. So I would have to mix it up a little bit, but I had to give him breaks on the iPad and only allow it, and that caused attitude problems too. But they didn't last as long as if I just had to, you know, pull him off the iPad and put him at the table to eat or you know whatever.
Shannon Chamberlin:So that was a huge learning thing for me, and I was doing it all by myself because my spouse was out working all the time. I basically would get up in the morning in the dark and get his breakfast ready, get him off to school, have coffee with his dad, get his dad ready to go and his dad would either go out in the afternoon and all the way into the late evening to work, or he would just have an appointment and he would go somewhere between three and five o'clock. So he was either not home when our kid got home from school or he was leaving within an hour of our kid getting home from school. So a lot of the learning and the adapting and all of this stuff between me and Jacob was all just me, all by myself. I didn't have anyone to share the burden with or to share the information with, and it just became, even when my spouse would get home. Instead of sharing information, it became just a real like a bitch fest because things were so bad and I didn't have anyone to talk to. And it was. I just couldn't believe that he was such a different kid for his dad and I didn't think it was fair that his dad would come home and the next day everything was lovey-dovey between the two of them and the boy hated me. He was so mean to me. So I would share with my spouse what our son had done, you know, and I just I had to save it all up. So the poor guy. He's out there dealing with people for our job and then he comes home I'm like, hey, how was your day? Did you do a good job? Did you sell? Okay, now let me unload on you, because your son made my life hell again.
Shannon Chamberlin:There was a little funny thing that happened. You know I told you that Jacob was getting into doing his laundry and stuff with me, right? So he learned that he has underwear and socks and shirts and pants. He has number one shirts and number two shirts. Number one shirts are long sleeve turtlenecks and stuff like that underneath, and then the number two shirt is the second layer and because it was so cold up there, we had to establish that. So he learned that he has socks and he came into my room one time during that first year and he was very unstable emotionally at that time. He went from being our happy boy all the time to just you never know. You never know. He's either going to be happy or he's going to be just pissed off.
Shannon Chamberlin:He had to get up so early and I didn't like waking him up and we just wanted him to do things on his own. So his alarm clock goes off and he's in there supposed to be getting dressed and I was still in my bed and he storms into our room, has this real angry look on his face and he says I need sock. And as an adult I thought that was hilarious. I'm like you need what, what? And he kept saying it and then I think it was his dad figured out he needs a sock or socks. He didn't have any socks in his closet. But he, I thought, where are you learning this? What are you talking about? And for some reason that little giggle reminded me of something else.
Shannon Chamberlin:He had been learning money at school. At the previous house, the one where we were still in boxes. They were teaching him money and they would pretend to do like a store and they would actually take trips to a store, to the local Walmart, and go and give money to the cashiers and expect money back, and they were expected to do this. So he had this little class that he would go and they were all special in the class, but they weren't like him. And so we thought, well, that's really cute, let's do that with him on our time too. And we had this little corner gas station and they knew us. The cashier knew my spouse. She flirted with him all the time and she ended up knowing Jacob.
Shannon Chamberlin:And so we're out in the parking lot and his dad gives Jacob a $5 bill this was before we went gluten and sugar free and he says, okay, go in there and get your candy and then give this to the lady, wait for your change and then come out. And he okay. So he runs into the gas station with the $5 bill and within 10 seconds he's coming back out and he's got the $5 bill and the Kit Kat Gangster the lady, didn't even come out. You know we had to go back in, but she wasn't worried about it. But that was the first and last time that we tried to have him do what the school says he's so good at. I mean he really, you know he sure does perform for them, but when we try to do it it's like he's never done it before. And then you start to wonder is the school being honest with me? Are they telling me the truth, or are they just trying to make themselves look good? Because I cannot tell that he's learned anything. This doesn't even seem like he's ever done it before. What is this? Is this a different child? Is he a different person out there. You know, you kind of want to spy on him and stuff, and that actually was the school where I was trying to.
Shannon Chamberlin:But as bad as everything got, he never got karma. You know, I've always been just absolutely shocked and surprised that nothing has ever turned around and bitten him in the ass the way that it would for a normal person. And what do I mean? Well, there were times when I mean, we had a full flight of stairs in there and it was carpeted. You know how dangerous carpeted stairs can be, stairs anyway, right. But the way that he acts on stairs and on things where any regular person is going to lose their balance, anyone who's paying attention is going to lose their balance and fall and get hurt. He is not paying attention and he's completely freaking out, flapping his head, spinning around, I mean just exorcist stuff.
Shannon Chamberlin:And he never, ever fell Balancing on the most dangerous stuff in my opinion, going up and down the stairs and the whole time just in full meltdown. You know, and we I was always not we, me I was always there and I was always like slow down, please slow down, don't do that on the stairs, please get off the stairs, please get away from the edge. Please get away from this. Please get away from that. You're allowed to have your meltdown, but please don't do it. Right there, I just was so terrified that, you know, something was going to happen and it was just going to get so much worse because it was very dangerous what he was doing. But nothing ever happened.
Shannon Chamberlin:And I started to think, man, would it teach him a lesson if something happened? I mean, does he need to fall? Does he need something to scare him into listening and understanding? Because, as you know, he's not even afraid of cars. But I never wanted that, you know. I just sometimes would wonder how am I going to get through to him that this is not safe for anybody? Well, the other day he was told to slow down because it was raining and they have a wooden deck on the front and back of the house and he has no regard for that at all. He's never fallen on the ice, he's never fallen off the stairs, he's never gotten what was coming to him. If you're anyone else and you do this nonsense that he does in the nonsense places that he does it, you're going to get hurt. He never got hurt. He never had what was coming to him. Well, just the other day that he does it, you're going to get hurt. He never got hurt. He never had what was coming to him. Well, just the other day he was told please slow down, be very careful. Here's why it was illustrated to him and he went out there and he busted his ass and he finally learned. I think that this is serious. We're not joking. It's not something we're just talking to hear ourselves talk. We actually care about your safety and we're telling you how to navigate this and you need to listen. So now he has a memorable experience to reflect on. When he starts acting like an asshole in a dangerous place where we have warned him not to, it finally happened. I thought, oh, his anointing has run out. He had that anointing on him, but not anymore.
Shannon Chamberlin:I have a couple things for you guys. I'd really like to hear from you if you have anything that you would like to share on a couple different points. First, I'm working on something really big here behind the scenes. It's not just working on the family and doing a podcast. I know that in one of my episodes, or several of them, I have mentioned something that I called the blueprint, and ever since I mentioned that that was like two years ago, maybe. I see it everywhere. Every company out there has developed something and they all call it a blueprint and I'm a little bit pissed off about that, but that's okay because mine is not reliant on the name. However, you know as hard as it is in this life. My spouse and I we kind of already have the dream as far as a complete family unit. Many of you out there are single parents or you're splitting custody or something like that, and if you are living in a family unit situation, you're actually not functioning as two spouses with children. You're just strangers. And you know my spouse and I are very, very lucky, but it's still hard. So, as hard as it is for us, I know it's even harder for you. And if you heard my episode mentioning the blueprint, this is the thing I'm working on. This is huge. I am so close to marketing this and I'm also very close to finding places to create this safe haven. This is huge.
Shannon Chamberlin:I want to ask you to contribute your stories. I don't have to share your name, I don't have to share anything. I'm getting together a few bits of information, such as some statistical facts about families like ours and kids like ours and parents who deal with these situations. But I'm also collecting stories. Of course, I've got my own horror stories and I've got some from other parents already, but I'd like to have some more. Right now, what I am interested in is you as the parent or the caregiver.
Shannon Chamberlin:I want to know how severe autism has affected your plans for your American dream or your whatever dream it is. If it's not an American dream, whatever it is. You know we are conditioned from the time we are young. What do you want to be when you grow up? And if we're lucky, we have people putting us on the right path and we are able to follow a path of education and experience to get us to where we envision ourselves when we grow up. If you're not lucky, then you're just out there flapping in the wind and you have these big dreams and you're doing everything you can to figure it out.
Shannon Chamberlin:Either way, you're working your ass off towards a goal to better your life, to provide for the family that you plan to have, or to provide for yourself, if you don't want a family, and you are trying to achieve this big dream and make it a reality. So you have done the schooling, you've done the apprenticeships, you've done the low totem pole work, you've worked your way up, you've gone to all the seminars, you've done all of the projects and all of the reports and all of the things. You've gotten all of the accolades. You've graduated from all of the classes and all of the colleges and you're continuing your education and you're working and striving towards this thing and you are an expert in your field and you are man. You are just on it. You are ready to take on the world. You're going to have some kids and provide a life for them, and your spouse is going to be just so happy with you and everything's going to be beautiful. What is it for you? I would love to know.
Shannon Chamberlin:It's very important to the project that I am working on, and this project is to provide a community for the community that I'm speaking to right now. We are so far apart, we are so alone, we are so unsupported, we are so misunderstood and we are so at our wits end. We're at war with the schools. We're at war with the therapists. We're at war with the doctors. We're at war with our neighbors. We're at war with everyone who doesn't care to try to understand how our lives have to work.
Shannon Chamberlin:I am working on something that is going to provide respite for people like us, safe havens for our children and us, healthy havens for our children and for us, and they're going to be exclusively for us. So I need your stories, I need to know what you gave up. I need to know how it has affected you. What was your life like before you had to make the decision to stay with your child instead of going to work? You either are going to give it up and stay home and take care of your kid because no one else wants to deal with them, or you're going to keep chasing your dream and, in some capacity, surrender your child to the state when you made the decision to stick with it and fight for your kid and give up everything you ever worked for and everything you ever dreamed of. What were you working for? What was your dream? Would you please tell me? I would love to include it in my presentations. I'm creating something of a TED Talk, even though I'm not going on a TED Talk not yet anyway but this is going to be huge and it's going to be for us and I'm forming all the right things. I'm doing all the right things on the business end of it. This is huge and it's important. We need it. You don't have to believe in it. You don't have to want it. Some of us do and some of us don't. And the ones who do, I'm going to be so grateful when I'm able to present you with this big break for you and this community. It's awesome and I just I want your stories, so please email me at contactparentingsevereautism at gmailcom.
Shannon Chamberlin:Tell me what you wanted to be when you grew up, or tell me what it was. What were you doing? Were you almost there? Were you living the life? Were you achieving your dreams? Were you doing all of the things that you had set out to do? Were you just right, on the right track? Were you running a business? Were you working with people and helping them? Were you doing something and giving to your community and doing things that fed your soul? What did you have to give up in order to live the lifestyle that you are currently living for?
Shannon Chamberlin:Severe autism. What are you good at? What is your passion? What are your talents? Sometimes it's a good thing to reflect on that. Anyway, being a caregiver for any kind of person starts to become your identity if you're not careful and I know that from personal experience I almost forgot about everything that I dreamt of. So don't let it become. I think I might need some therapy on that. I'm still in tears here. Don't let it become your identity. Let's reflect on you. What are you good at? What is your passion? What are your talents? If you were in a community where everyone was in the same boat and was supportive of one another and understanding of each other's needs for space and sensory deprivation and deep breathing and all of the things that we don't get If you were in a community like that, what would it do for you?
Shannon Chamberlin:This is huge what I'm working on, and it's not going to be for everybody, because some people are already set in their ways and they already have a great place and they already have residency in a state where their kid's about to be taken care of and stuff. But some of us are absolutely not being helped and we are consumed by this lifestyle and we see no light at the end of the tunnel, don't get to interact with other people in the regular world and we don't feel that we have any chance to contribute or feel that we're worth anything more than being a slave to our children. A lot of us are not in healthy relationships or we're not in relationships at all, and when we're doing life like that, it is very attractive to know that there is a place we could go. And this is what I'm working on, and I will have more details. I'm going to put together a huge presentation. I'm working on it. It's not going to be huge. It's going to be very simple and very easy to understand and very beautiful. Almost all the details are worked out and I'm going to put it on my YouTube channel. I'm going to put it on Instagram. I'm going to flood the internet the best I know how with this presentation long form, short form, all of it and I'd love to hear from you.
Shannon Chamberlin:The other thing is, I'd like to acknowledge that here in the US, it's almost Thanksgiving and, as you know, our family doesn't celebrate holidays. We don't celebrate anything except our son's birthday, and, honestly, we don't do much of that either, because he just doesn't respond. Well, I'm sure you can understand, but my spouse and I were talking about it this morning and we think that it is important to give gratitude every day, every month, not just during Thanksgiving, but kind of especially during this month and during the holiday months, because everything looks so much darker for us, doesn't it? My spouse actually is still grateful for something that happened when our son was very young, before I was even around. He was taking Jacob to Easterseals for play therapy and to just kind of get this all figured out. That's where he got diagnosed and they had a program to help the interaction with family and to help teach dad how to do things for our son. So here he is at Easterseals and every time he left Easterseals he was so grateful because, although Jacob couldn't talk, he could walk, he could toilet.
Shannon Chamberlin:There's always someone worse off than you believe it or not. No matter what you're going through, you know there's always someone who's suffering more in one way or another, and I know that's not a great way to look at things and it's definitely not a way to get your your happies. However, it does put things into perspective and that is something that has stuck with my spouse for all of these years walking through Easterseals and seeing all the less fortunate children who were much more disabled physically than our son. Our son is not great mentally, but physically he's doing very well and my spouse is grateful for all of that to this day and if he ever feels down, he always thinks back to how he felt when he was leaving Easter Seals every time that he went to therapy with our son. For me, I am grateful every day that I've made a huge difference in this boy's life. His mother abandoned him. It was a toxic relationship anyway between her and my spouse and it just was not a great situation. All three of her children were abandoned by her and I was able to make a difference in the life of one. I'm really, really grateful that I made a difference in his life, and not only his life but my spouse's life. You know, things were bleak for me and they were bleak for them, and then we got together and now we're bleak together, but but we love each other. No, I really I have made a huge difference in his life, and I know that I have. Also, he has taught me a lot.
Shannon Chamberlin:I'm not a patient person by nature, believe it or not. I'm a total Gemini. I'm very, very busy and I'm very impatient. Our son taught me patience very quickly. I think I learned patience when I was teaching him what to call dad and when we were waiting for daddy to come home and learning that lesson together. I started to learn patience and kindness very quickly. I was always great with kids, but I never wanted any, but I drew on my background of caregiving and babysitting and I learned patience. I think that's the biggest thing. I am much more patient and I'm a much better person than I was before, and it's all because I have to be better for our son.
Shannon Chamberlin:There are so many bad actors out there. There are so many people who influence his life negatively and impact him in a way that he never should be, and they disrespect him, and I've always hated bullies. I'm always confronting bullies. I'm always confronting people all my life who pick on people who they view as being less than them, and I don't think that's fair. I don't think you should ever view people like that, because you don't know, when I see it being done to anyone, it's a problem. When I see it being done to someone of diminished capacity, that's a huge, huge problem, and I have been fighting for him ever since I met him. So I just think, coming out, you know, through the whole experience, I've become a better person.
Shannon Chamberlin:I'm very grateful for that. I'm very grateful for the experiences that I've had in order to share them with you. I'm grateful that I have received so many messages that this is actually helping people. If nothing else, it can just kind of give you things to look out for. Something might happen tomorrow and you can think, oh man, that one lady talked about this and that in her episode. You know, I'm just. I'm grateful for a lot of things and I am constantly working on making life better for us, and I want to include you. It's not just a family-focused thing for me. I know that I'm not the only one suffering. I'm not the only one who has given up all of my dreams to help this kid. I'm not the only one who has been backed into a corner by the people who are supposed to help him. I'm not the only one who's going through this and I'm not the only one who's going to benefit from this big project that I'm working on. I'm getting closer every day to making it a reality, and my entire focus is helping all of us, not just the kids and not just the parents and not just myself, but all of us.
Shannon Chamberlin:I really hope to hear from you on. What are you grateful for through your experiences. Let's give some gratitude. The holidays are hard on us. You know all of us. Again, don't lose your identity and think to yourself what are you grateful for, whether it's inside of your family life or outside of your family life? What do you thank God for every day? And if you don't believe in God anymore, what are you grateful for? You don't have to thank God, but you're probably thankful for something, and I think it's important, at least during these couple months November, december, january to reflect on that. And if you would like to share it with me, I would love to read your email. And again, don't forget, I want to know your story. What did you give up? This is going to be really big and I can't wait to share it with you guys. So get ready for my next episode. It's coming up next Wednesday and I've got more crazy, crazy stories. If you have any questions on anything I talked about today, of course you can always ask, and I just handed my spouse the list of questions for the interview I'm going to do with him, so we can throw in another one or two. If you did have some and you haven't gotten your questions in yet, go ahead and email me now with those. I'm going to probably interview him next week and air it the week after. Perhaps We'll see how it goes.
Shannon Chamberlin:I encourage you to stick up for yourselves and your children during the holidays. Don't let anyone rain on your parade, even if it's your own kid. Your kid doesn't like the holidays, doesn't like the decorations, doesn't like something. Make a little something in your room. Have a little private space where you can go and be grateful on your own and then go back out into the rest of the house and be immersed in hell, but make something good for yourself. My heart goes out to everyone during these times, because these are some of the most depressing times of the year, and also you're probably going to have a school break again soon, and that's always really good fun. Huh, you hang in there. You're a superhero.