Parenting Severe Autism
Parenting Severe Autism
EP.45. Learning Differently: A Story of Severe Autism, Resilience, and Compassion
Our latest episode explores the transformative journey of non-schooling for kids with severe autism, emphasizing the value of nature, creativity, and family engagement in a child's learning experience. We reflect on the challenges posed by traditional education methods and share insights on how we've adapted our parenting approach to better support Jacob's unique needs and interests.
• Exploring the concept of non-schooling as an alternative education path
• Emphasizing the importance of outdoor experiences and nature in learning
• Reflecting on Jacob's interests in movies and theater as educational opportunities
• Establishing structured family time and navigating Jacob's resistance
• Communicating effectively with Jacob about his feelings and behaviors
• Acknowledging resilient moments of growth and understanding in communication skills
• Identifying external stressors affecting Jacob's emotional well-being
• Planning future episodes focused on experiential learning and caregiver relationships.
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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. If you have comments or questions, you have two ways you can reach me. If you go to my PSA - short for Parenting Severe Autism - psa. buzzsprout. com
Shannon Chamberlin:That's the hosting site for my actual podcast before it gets sent out to all the other platforms. So from that site you can click on fan mail and I don't believe there is a charge to send me any messages, so you could do it that way. You'll also find multiple ways to support the podcast. If you're interested in that, you could find little donation icons on your podcast player on your device, or you can check out the links once you are on my Buzzsprout site. Additionally, you can contact me via email at contact. parentingsevereautism@ gmail. com. The most important thing is that you are here listening to these episodes and sharing them, hopefully, especially if one resonates with you, and that's the best thing we can do for ourselves in our exclusive, marginalized little community here. So thank you so much for listening and sharing my podcast with others.
Shannon Chamberlin:So, picking up where we left off, we are in the middle of attempting non-schooling To refresh your memory. Non-schooling, as I understood it was a way to basically detox the child from the traditional methods of schooling in public and private education systems. So since our son appeared so damaged from his experience at his most recent school and we had to pull him out of school, we signed homeschooling paperwork but decided to pursue the non-schooling for the first six months to a year, just to give him a chance. I mean, I didn't feel right just pulling him out from one institution and putting him into another, so to speak, by making him sit at the kitchen table for how many hours a day doing the same things that he did at school. He just really seemed like he needed a restructuring in his life and we just wanted him to be his happy, bubbly self again. So this was the route that we chose. So with non-schooling, you're basically allowing the child to experience life as it comes at them. And you know, with his autism, if he is allowed to do what he wants, he'll just stand in one spot in his bedroom all day and shuffle his feet and hum. So life would not come at him and he would experience nothing.
Shannon Chamberlin:So I kept trying to get him out in the world, out on the property we had, all this property. We would take him for hikes and his dad would take him for four-wheeler rides. We would take him stalking wildlife to pretend that he was hunting. This is where he learned hunting voices from dad accustomed to the previous tenants not going outside ever, so they had no idea, basically, what humans were on our property. It was really easy to sneak up on the deer. We had porcupines and some of our family was able to see bobcats. We had bears. There was a wolf track found several years in a row Not a lot of them.
Shannon Chamberlin:We had foxes, a ton of different wild birds. We had wild turkey and grouse and goose and just all kinds of fun stuff, and I think we had otters. We had a beaver, it was just. It was really cool, you know.
Shannon Chamberlin:So we thought, well, we'll just take him out and introduce him to nature, and we had a couple little spots in the woods where we set it up for picnics and stuff. We found some really beautiful spots and we thought we would just try to let him absorb nature, because that's what all of us are missing. You should try it too. Take your shoes off and go stand on Mother Earth. It's really been helping us and it seems to calm him down. I don't know if I mentioned that before, but it wasn't a part of our lives at this non-schooling point. But it is a part of our lives now because we don't get enough nature anymore. So maybe give that a shot.
Shannon Chamberlin:So what you know, what are you supposed to do with this kid if you don't educate him traditionally? And he doesn't? You know, he just he's not happy. So I started thinking back on his interests, because he's not that different from any of us. If we're not doing something that we enjoy, we're not as happy as we could be. Well, he's just a little more extreme to where he's just not happy if he's not doing something he enjoys. So far we know that he enjoys video games, watching movies on repeat in specific spots, shuffling his feet in his room and that's about it, and then throwing little pissy fits all the time, no matter what if we tried to get him to do something that was outside of the realm that he is accustomed to that I just named. So it was a little bit of a challenge.
Shannon Chamberlin:But I started thinking about some stuff and, as I've mentioned before, jacob is really great at sound effects and he loves acting out scenes. I remember back when he was probably seven years old've Got a Friend in Me and we were all just sitting there as a family unit watching this movie. For the umpteenth time Out of the blue, jacob jumps up from his seat with his dad on the couch. He's laying around in his underwear. So he jumps up off the couch and grabs this tiny little orange microphone that I've never seen him play with before. His toys were everywhere, but I never really saw him play with any toys. So he jumps up and he grabs this little microphone at the perfect time and starts lounge singing kind of and basically imitating the penguin. The moves were perfect.
Shannon Chamberlin:It was at the exact right timing, from the time he flew off the couch, picked up the thing and went into character and he sang the best that timing, from the time he flew off the couch, picked up the thing and went into character and he sang the best that he could, the whole song You've Got a Friend in Me. He couldn't pronounce the words, of course, but he likes to make a noise. It's kind of like humming, but we knew what he was doing and mostly it was expressive, very much in the face and acting out in the body, and it was lovely. It was so entertaining and shocking that he did that. I mean, we've never seen him do that before.
Shannon Chamberlin:So that is something that was at the forefront of my mind when I was trying to think of what does this kid even like that I could substitute in place of an actual school education? So I thought well, he loves acting and he loves doing voices, so he loves acting out scenes from movies with his dad as well. I mean, he's got quite a range, you know, of course. He's got Full Metal Jacket and Toy Story, he's got the Lion King, emperor's New Groove Cars, scarface, scooby-doo just every movie that they've ever seen. I mean just every movie that they've ever seen. I mean he just watches them all on repeat and he and his dad have a routine with each and every movie that they watch together. They can recite back and forth whole parts of the movie Hunchback of Notre Dame, everything that he has ever seen, if his dad has seen it with them. They have a little routine and it's adorable. So I thought you know what? Why don't I try to find like a special needs theater group or something? And suddenly I am excited. I'm like, yes, this is gonna be it.
Shannon Chamberlin:So my search started for some type of entertainment group like that that accepts special needs kids and allows them to express themselves through acting and song, even if they suck at it. That's why I needed it to be for special needs kids and allows them to express themselves through acting and song, even if they suck at it. That's why I needed it to be for special needs. You know, you can't expect every kid to be a performer, but every kid deserves to have an outlet. Every kid deserves to have a little bit of fun and do the things that they enjoy doing, especially our kids. So I just thought that was great and the hunt was on for that.
Shannon Chamberlin:It took a really long time for me to come up with anything. As a matter of fact, I was really discouraged after about the first six months of searching, but that was one of my ideas for his new non-schooling lifestyle. So in the meantime he was just becoming more and more of a nightmare for us and I didn't know what to do. He was getting so bad. We decided to make sure we were taken two days off a week. We never really did, because I worked and kept him with me in the office all the time and the office was like a second home for us. He had his own room with a bed and everything, a TV game system. We had a kitchen. I mean it was perfect. It was almost like I wasn't working working, except that I needed to have my quiet time to work and I gave him that same quiet time to play and do what he wanted to do. So it was a really good setup.
Shannon Chamberlin:We took holidays off that were kind of forced holidays, but we worked every chance we got because we were trying to get ahead and we were trying to build a business from the ground up. Anyhow, when we pulled him out of school we realized that you know what? We need to be more deliberate about everything now, because he's not going to be in school. He's going to notice if we're working all the time. So life is different and we need to make some changes.
Shannon Chamberlin:So we decided to take two days off a week and in the business of sales, taking two days off in a row is not the greatest idea. So we took our slowest days. We researched all of our calendars and came up with well, wednesday and Sunday are the best days for us to take off. Wednesdays and Sundays were for family time. We would demand to have a few hours in the morning just to ourselves to actually get comfortable and shake off any feeling of needing to work. You know, just have your coffee, relax, get into a different mindset, get some stuff done. You know, just regular people, day off type stuff, right. So Wednesdays and Sundays.
Shannon Chamberlin:Now, as soon as we made that decision, we also realized that, you know, he doesn't really have much of an interest in having us designate two days in a row to family time either. He is really not a fan of us at this time. So we thought, well, it's probably going to work out perfectly for everyone because it'll give him a break and then a few days later he gets to hang out with us again and then he can do his own thing. And so it just seemed like it was going to work out. As soon as we implemented this new plan, we didn't even actually tell him and maybe that was where we went wrong is we didn't tell him our actual plan and he just started realizing that on these two days of the week we were in his face more than usual, and maybe that's bullshit to him. He was just pissed. So every single Wednesday and Sunday morning we would go outside and have our coffee and enjoy the wildlife and everything, and he would get up.
Shannon Chamberlin:As soon as he knew that we were enjoying ourselves, knew that we were enjoying ourselves, he would run outside and just commence to screaming at us and whining and, using no words that he had in his vocabulary, he'll bare his teeth and make this real whiny, pouty face and then open his mouth really big like a scream mask and then just make this awful high-pitched, you know, and he would do this for hours. No matter how we addressed it, he would not stop. He just refused to allow us to have our Wednesday and Sunday. We never once, in four years of having Wednesdays and Sundays off, got to enjoy one of those days Never once. He would not allow it and he had it timed perfectly. We didn't even tell him what day it was, he would just do it Every single light clockwork Wednesday and Sunday.
Shannon Chamberlin:It was freaking terrible and it got so bad so quickly that I started to research online, you know, because I hadn't met anyone else who could help us. Now I'm on YouTube looking for ideas and reasons and solutions and everything you know. Well, everything was just really superficial information, really dumb, just people talking heads saying stuff without saying stuff and making a YouTube channel with it, and it was just garbage information. None of it, none of it was useful, not one piece. Finally, I ran across a lady and I have told you about her before and I don't know her name. I never found any of her other videos. I got the answer I needed, the answer that I was looking for.
Shannon Chamberlin:It just resonated with me was that, hey, when your kid, with autism basically, is being a jerk anytime, that they're actually acting inappropriately and it's affecting you negatively, you need to tell them what is going on. She said the best thing to do is to calmly address them like a regular person, because that's how you want them to understand their own place in the world. I view you as a regular person. You are not a special needs person to me at this time. You are the child, I am the adult, but you are a regular person. So it's that kind of mindset and she just said you have to tell them how it makes you feel. You have to sit them down, get their attention the best that you can and tell them when you make this noise, that gives me a headache, it makes my head hurt and that makes me sad or that makes me feel very angry, because sometimes you're going to have them do something and you're just going to snap out, and I snapped out yesterday. It's going to happen. So not everything that they do is going to make you feel exactly the same way, and that's the reason that we need to communicate it to them and have them understand that what you do creates a ripple effect in this world. I am part of your world. I get that first ripple and this is how it makes me feel. I don't like it.
Shannon Chamberlin:So I adopted that very quickly and every single time he would do something to irritate me, I would say, jacob, when you blank, blank, blank, it makes me feel blank, blank, blank. And I would say for the first handful of times he looked shocked or dumbfounded that I was actually speaking to him like a regular person and that I was sharing with him how I felt and what it was that he was doing that was making me feel that way and why I was going to react the way that I was. So I thought, yeah, this is great. He just had this dumbfounded look. I don't know that he understood everything that I was saying, but he, at least, was trying to absorb and adjust to hey, she's not like scolding me, she's actually she's. Why is she talking to me like this, you know, and almost as if he couldn't believe that I was revealing my feelings to him, and it actually.
Shannon Chamberlin:He is a little bit compassionate sometimes and I think it actually affected him. After about five or ten times of it, though, I would say, jacob, when you and he would insulate and just start whining and basically whining over my voice and screaming and doing all the noises that he could possibly do, and then it started to become physical as well, and eventually he would counter my attempt with a fucking full meltdown. So it didn't work. After a while, and this became his MO, I would learn something and start to use it to counter what he was doing that was hurting me or hurting the family or causing strife in one area of life or the other, and he would adapt and overcome. Whether it was talking over me or yelling over me or having a full meltdown or just wising up to whatever the change is that we made, he would adapt and overcome and get back to doing exactly what it is that we were trying to stop. This became the constant and I'm racking my brain for weeks now trying to remember more specifics, but they were.
Shannon Chamberlin:I call them the nickel and dime shit, because in between all the big shit was this nickel and dime bullshit that just eats away at whatever you have left in between all the big things that you have to deal with with him. I'm having a lot of trouble currently remembering the nickel and dime crap, but I will throw it in there anytime I can. But the main point is that anytime he would do something and we would come up with a way to prevent him from doing it, he would come up with a way around it to get back to doing it. And it was maddening. It was every, every single thing in life, all of it. This applies, it is I can't. I mean it just sucks. So anyway, it was a great idea and I still do it to him and he actually hates it. He does not give one flying fuck how I feel about what he's doing until he's ready to care. Then he'll be like oh, are you okay? Then he'll say I feel bad. I'm sorry, but the biggest thing that works right now is just to stop talking to him and stop responding, and he actually really hates that, but he hates it differently and he tries really hard to get in my good graces again, even though he knows when I'm done talking to him, I'm done for the day. It's over and I'll try again tomorrow. That's I have to remove myself, but he tries like hell the whole rest of the day to get me to talk to him. So that's my new psychological warfare that's going on for the past few years.
Shannon Chamberlin:So after he started resisting that, I thought, well, here's something we can do. Maybe I can look on this iPad and see what other apps are available for homeschooling, you know. So I started looking into speech therapy and I found a conversation app. I found a couple different ones. I downloaded them and started trying to make that part of his daily educational diet, because you can't let up on that, even though you're non-schooling. That's different. Learning math and whether it's sunny or cloudy outside, and how to sit still in your seat and how to ask to go to the bathroom that's school, but speech we don't want to lose that. He had 150 words and I wanted to at least keep it that way until I could find something to help him.
Shannon Chamberlin:So I get this conversation app and he hated it. He hated every single one of them. He would not, freaking, do it. They were cool, they would have multiple choice. They would give you a situation. So now it's listening to the story and comprehending the question, the story and the question and then choosing the right action. And he was just guessing his way through it. Just tap the screen and get on with it. You know, if you get it wrong you get another try. It's not that hard. So he worked his way around that and never did learn anything. And he always, to this day, will start complaining if we're trying to get him off of his autism rotation of echolalia. He'll go oh, conversation, conversation and he'll start yelling at me about conversation. So that did not make a great impression on him. But I stuck to my guns and I made him do it as often as possible and I didn't care if he fought me on it because you know, damn it, man, I am trying to help you. I can't just let you waste away and I can't put you in that school and I don't know what to do. So I'm doing the best I can right now. I just want you to heal.
Shannon Chamberlin:You know he was emotionally damaged. He has trusted everyone in his whole life and it seems like in one 12 month period, everyone he ever trusted let him down and I felt terrible for him. So I try to look at it from possibly his perspective. You know, I think we let him down when we left him with his grandma and grandpa for so long, even though we thought everything was going to be fine and even though his dad would give him the option all the time on the phone do you want to come home or do you want to stay with Mamaw and Peppa? And he would say, I want to stay? And we would say okay. But I think that obviously they let him down because he was so unhappy and collapsing on me when we finally got him in the parking lot that day. So I think that he felt that we let him down. His grandparents let him down. I think he felt that his sister and his mom let him down because he never should have been with them in the first place. And the only thing that ever leaves him is hurt in his heart because that woman doesn't ever give him closure. She just pops into his life and then pops right out without even saying bye. Give him closure. She just pops into his life and then pops right out without even saying bye. So all of that happened in a two-month frame of time.
Shannon Chamberlin:And then we send him into school and he's always trusted all the people at school, even though it's a new school. He trusts you. He never, ever mistrusted anyone. You know, he just loves everyone and he goes there and we trust the educators with our child. He also trusts them with himself, and here they are forcing him into situations that hurt his sensory processing and abusing him physically. You know everyone let him down, basically all at once. So while I'm trying to be compassionate with him on this and allowing him to heal, I'm also trying to make sure he doesn't decline. I don't want to be a bad mom. You know you can't just pull your kid out of school and let him waste. That's not what non-schooling is. So I wanted to keep that in perspective and the damn thing of it is that he would not allow me to educate him. He would not allow me to help him in any way, even when I found what I thought were the best ways you know, little videos on YouTube or leveling with him human to human he just won't have any of it Ever since that time of us taking Wednesdays and Sundays off, he really fell into this routine of hating everything.
Shannon Chamberlin:Every day that went by. Another thing he used to love he hated and it was really hard to deal with. I mean, do you want to color? No. You want to go for a walk? No. Do you want to ride the four-wheeler? No, Just everything. I mean everything that he ever enjoyed. Do you want to take a nap? No, whatever. You want to play with the dog? You want to walk the dog? You want to run Anything anything? No, no, no, no, no. The only thing he would do is come within about four to six feet of us and scream and whine and scream and whine and scream and whine and not use words, and just mumble, just bullshit as loud as possible. And I think it was because we were outside and he's trying to fill up his space around him, which is never ending outside on 50 acres. So we forced him to do things like hiking and wildlife watching and stuff like that, but every minute of it sucked. For the most part he had some fun with the hunting, voices and stuff, but it was really his decision all the time he was deciding. I'm either going to be happy or I'm not. I did pick that up from school, where they taught him to make good choices, so that's something that still resonates with him today. There are a few things that were good from school and making good choices, helping him understand that he creates his own reality by the choices that he makes. That decides what everyone else is going to do, you know.
Shannon Chamberlin:So instead of getting aid from the state, like I was trying to, there was a waiting list. Still it had not been funded and I was out there looking for theater groups and acting and stuff like that for special needs kids. I found a couple other outlets instead. So I found a nonprofit organization for kids with autism. The lady that ran it was actually referred to by many as the autism whisperer, so I was very enthusiastic about that and I did learn some things from her and through her I found out about other therapy programs that may be available. So I would bring him to her place. And at this place they had a runner and they had to lock the door. It was a retail kind of you know brick and mortar location and they had to lock the doors all the time because they couldn't have this kid running out into traffic and now with all these kids, I'll tell you about them. As time goes on there were different things about each of them and not one of them was the same not one and we got to see a lot of different perspectives as far as medication and things like that, and most of it was very scary.
Shannon Chamberlin:So I start taking him to this place and it's mostly just play therapy and I didn't really understand what they were doing. All I knew was that she was better with him than I was and there were more people kind of like him there than at my house and he seemed to not like me very much and I wanted, I had to get stuff done and I just wanted him to have some kind of outlet or inlet, I don't know, and I just wanted to bring him in there. So I would bring him in there several days a week and she pointed me towards this place in Green Bay, wisconsin, called the Cerebral Palsy Center. We called it CP Center for short and I started learning about how to apply for him to receive services. I had never done this before. I didn't know anything, I didn't even know the terminologies back then, so I began the process of getting him signed up to get evaluated for services from the CP center. I never realized that stuff like that goes on.
Shannon Chamberlin:So if you are looking for something to help and you're not finding it, his insurance it was. You know, it's just welfare state insurance for the disabled. It covered his therapy there. So maybe look into that. If you have any kind of treatment centers or therapy centers for other conditions such as cerebral palsy or I don't know what else, but maybe you can find some and see if they have anyone who is qualified and see if they're interested in helping you out.
Shannon Chamberlin:It really helped us out. It was actually it didn't really help us out, but it helped us learn about our son. It helped us learn about his power over others professionals in the field who are professionally trained with accolades on dealing with people like him and more severely disabled than him, the power he has over them and the way he's able to manipulate anyone in the field anyone. There is no one who can compete with my son. He is wily, he is pretty fucking slick and it is really annoying because it doesn't allow him to get any help, no matter what. These people are so qualified and they are angels. They are amazing to be able to work with people like him and people like the other kids that I've met and people who are just so disabled. These people are saints in my eyes and they couldn't help him, and I'll tell you more about that in other episodes some of the experiences that we had. But that's what I really learned from putting him into therapy at a cerebral palsy center.
Shannon Chamberlin:I learned that if he does not want to be helped, he will not be helped. He will prevent you from helping him in any capacity. All he wants is to be waited on, to be adored, to be looked at. Look at me, look at me. He actually says that all the time. Look at me, look at me, look at me, look at me, look at me. And he's not doing anything. Just look at me, look at me, look at me. And if you're not doing that, then you know you're worthless. If you have actually something of substance to create in his life or to contribute to his life in any way, he's not interested and he will make sure that you have no opportunity to help him. It is maddening. In my next episode I'm going to go into some detail on these programs that I just mentioned, I got a funny little story. I'm saving for next time too. I have some stories here.
Shannon Chamberlin:Things have been changing a lot lately. As you know, he is now 24 and okay, so the birthday didn't go well. I cried all day, it was terrible I think I mentioned that and we made his cake. His dad made a wonderful cake for him and it was a very hard day. We didn't do balloons or banners or a big blowout with dinosaurs or superheroes decorations or anything like that. We didn't do it. We just went through the motions and got through the day, and I can't say that I feel bad about it. I just feel so tired. I'm tired. He's 24 and we've been throwing birthday parties for a five-year-old for years, for all these years, and I'm just I'm tired, especially when he is abusive during the day and then wants the same damn treatment as if he has been good. I'm so tired, I'm tired. And these birthdays they're not anymore. They're not fun. You know it's hard, so that's been going on, but some interesting things have been happening and there was no full moon when some of this stuff happened, so I thought it was worth noting. So let me tell you a couple things that have happened in the past week.
Shannon Chamberlin:Last week, after my spouse and I recorded our episode, jacob came down here while I was finishing up and saving everything and I was the only one down here. I had my back to him at my desk here and he just came in and they call me Rose or Rosie sometimes, and he says hey, rose. And I said hey, buddy, how are you doing? And he says oh, I just stressed out. And I said you just stressed out. He said yes. I said well, um, if you want, you can go sit down on my couch in there and relax. And he didn't say a word. He just walked in there quietly and sat down and I thought that was really grown up of him and very suspicious as well, because when he says something like that and his dad and I were down here that tells me that he and his grandpa are at odds, probably. So I don't know. And that was, yeah, I don't know. That was weird.
Shannon Chamberlin:We've been having some interesting talking events lately. He's been getting up at strange hours and sleeping at strange hours. I mean he's up during you know the day and stuff, but he's just been. His schedule has been way off. So his eating schedule is off, everything is off, it just depends on when he gets up. His schedule is becoming very erratic. It's starting to mimic his grandfather's schedule, their schedule.
Shannon Chamberlin:The grandfather and the uncle there are very erratic with their timing of going to bed and waking up. I mean, sometimes they'll go to bed at seven o'clock at night, other times they'll go to bed at two o'clock in the morning and I don't understand it. But the damn thing of it is, if they stay up and they're in the living room they're watching TV. My son's door. He's very sensitive and he has busted his door to where light will seep through the door panels themselves. But also, you know, it's more than an inch off the ground and he doesn't have carpet. So a light goes in there no matter what. And now he's got, you know, I'm sure rays of light can come in Even if the hall light is off.
Shannon Chamberlin:If these guys are in the living room past a certain hour with the TV on, they've got the biggest TV you've ever seen in your life and it's in this small ass living room. It puts out a lot of light. I just think it keeps him up, and especially now that it's winter and he doesn't have his window, air conditioner running, he can hear everything. The walls are paper thin. This house is not well insulated, so I just don't think it's a very friendly environment for him. But there's no other way to do it and I can't get them to care. So the only time the TV is at a very low level is if they're watching it in the early, early morning. It's still very bright, but at least our son is probably sleeping when they turn it on and it's not as bad. But I think that their habits may be affecting his sleep habits.
Shannon Chamberlin:Anyhow, I go upstairs and he's telling me he's hungry. And it's a really weird time of day. He's been sleeping, going to sleep before lunch and then he sleeps through lunch and then he wakes up at like 3 30 and expects to eat lunch or dinner. And I'm just like, dude, it's not time for anything right now. You can have a snack, but you missed the boat. Like I am not able to cook for you right now. That's not what time it is. It doesn't work that way. You have to stay up and eat lunch and then take a nap. You know, it's just. I'm sorry, buddy, and it's not going to work that way. So he's been getting snacks at a strange time and then he eats a couple hours later. You know, I don't know.
Shannon Chamberlin:Anyway, he was saying that he was hungry at a really weird time of day and I said, well, I knew his dad fed him breakfast and then I was at the gym for a couple hours. So I didn't know what was going on, you know, and I was trying to feel it out and see if I could get some answers from him. So I ask him what did you have to eat today? Now, see, I used to ask him that all the time he would come home from school and I would say, hey, did you have a good day at school? And he would say yes, and I would say what did you have for lunch? Even though most of the time I packed his lunch, I still would ask him. Just to get him talking. Some other times he would eat at school.
Shannon Chamberlin:Before we were so picky about what we were eating. You know, we were healthy but not strict like we are now. And I would always ask him, no matter who made the lunch, whether I knew what it was or not, I would always ask him what did you have for lunch? And that would start the conversation and I would ask as many questions as I could to get him to talk as much as possible. So I still do that, even when I make his lunch, you know.
Shannon Chamberlin:So I said to him basically you know what did you have for lunch? But I said, what did you eat today? And his grandpa almost decides to answer. He actually opened his mouth and made a sound. I'm like dude, you know I ignored him, but he does that all the time. He loves to tattle on people and they also love to put words in his mouth. So I don't know if he was trying to tattle on him or if he just thought he was special enough to answer for my son. But I didn't know where to get his answer from. He didn't know what I was asking him. He didn't know if he was supposed to respond. I mean, it was just a really weird interaction.
Shannon Chamberlin:So I asked him a million different ways what did you have for breakfast, did you eat breakfast? And he just staring at me with his mouth open, and I was giving him plenty of time to come up with an answer. You know, but if you wait too long he'll forget in the first place what we're even doing. So I was trying to keep him engaged, give him enough time to come up with something, but also keep it going before he lost interest in the conversation. So I'm going on and on.
Shannon Chamberlin:What did you have for lunch? I just asked him a million different ways. I mean this goes on for like three minutes, okay, and I finally said, okay, I had potatoes for breakfast. What did you have for breakfast? And finally that's what works. So he's like waffles. And he actually did have lunch. I didn't realize it because that's the last thing I knew was that he got some waffles in the morning from his dad and he usually would go with the last thing he remembers eating, because it's the easiest. So since he picked waffles, I thought okay, and I did ask him what did you have for lunch? And he said I don't know. So I thought okay, nothing. Then Did you not eat? No, no, lunch. No-transcript. Let me. Let me back up For reference. I call the uncle Tweedledee and the grandfather Tweedledum. Together they are the Tweedles, okay. So when I say that, that's who I'm talking about, everyone in my life has a nickname and it's based on their behavior. And I told my spouse I think I just caught the Tweedles making sport of Jacob, and this is what happened the other day.
Shannon Chamberlin:I went upstairs and I come up into the kitchen. Tweedledee is in the dining room with his back to me and Tweedledum is sitting in his recliner in the living room. And I see my son walk past me in the kitchen and give Tweedledum a piece of paper towel. To me it looked like a regular paper towel. These are really crappy paper towels that they decided to buy this time around and they don't rip right and they're very cheap. So that's's what he was handing him and he was in the way of Tweedledum being able to see me, and Tweedledee still had his back to me and I was moving towards the sink, which is completely out of the line of sight of both of them anyway. So I'm moving there and I hear Tweedledum say well, this isn't going to help me, jacob, this is ripped to shit. This isn't even a paper towel.
Shannon Chamberlin:And then I hear Tweedledee start chuckling and I hear Tweedledum say can you get me a regular paper towel now please? And I silently have my mama bear signals going off, but I'm keeping quiet. I silently rip a regular size paper towel off and I took two sections instead of these little half sheets that they have. Now I took a full paper towel and gave it to Jacob and while I was doing that, tweedledee turned around and he saw my son getting the paper towel from me and then he starts saying yeah, jacob, I gave you that paper towel, all ripped up like that, to give to him because I thought it was going to be funny. And he didn't have a paper towel, did he? I messed, I was messing with him, wasn't I? Because I thought it was going to be funny and he didn't have a paper towel, did he? I messed, I was messing with him, wasn't I? And I thought that was bullshit. I thought that I just walked in on these two tag team and my kid and making sport of him and it came to a stop because I was standing there. So I'm still pretty pissed off about that. I hate it when people do that to my kid. He is not there to be made fun of. He is not there to be put in weird situations to make fun of him later for it. He doesn't understand and it's not fair to him. He is simply giving you what someone else gave him to give you, and now you're. You know it wasn't fucking cool at all. Yeah, but he was fessing up out loud to my son.
Shannon Chamberlin:Right after that, jacob goes in and sits down on the couch and he very quietly said something to his grandpa. You know, he said something like hi, peppa, his grandpa says hi. And he said I didn't even hear him. He was talking so low to his grandpa and I was right in the next room. Normally you can hear everything, but he, purposely, was talking so quietly and the next thing I hear is his grandpa saying no, no, don't scratch your face, don't scratch your face. And he was in there threatening to scratch his face quietly to his grandfather while I'm standing in the kitchen, and he made the motions.
Shannon Chamberlin:I asked him later. I was like what is this? And he said well, he put his hands up on his head and acted like he was scratching his face and he said I'm sad, I'm scratching faces, and that's been his thing lately. I'm sad, I'm scratching faces and I don't know. I don't know why he's so freaking sad. But I will say that his behavior has been off the charts since his birthday, which is when his grandmother came by and forced her presence on him. Ever since then, it's been pretty bad. So it was bad before, but now it's really bad, and it's easy for me to blame her, because she's something that's not a constant. She was a new thing that came into his life and then left, and usually three to five days later is when all the bullshit starts coming out from his pain that is caused to him by these people who do this to him. So I don't know. I don't know if it's him or if it's because of her, but something weird has been going on with him lately.
Shannon Chamberlin:Now, just yesterday, no, two days ago I had another language lesson with him in the kitchen. I think it was harder than the one when I was asking him what he had to eat that day, two days ago. I was up there and he just babbles stuff, you know, and so he says superhero squad is what he was saying. That's not how he says it, but that's what he was saying. And I understood superhero. And he would say superhero squad, superhero squad. And I'm like what are you saying?
Shannon Chamberlin:And most of the time when I ask him that he'll start spelling for me Usually he's pretty good about spelling and he might get it jumbled up a little bit, but he wouldn't even spell it. He's been even not wanting to spell it, not wanting to correct his speech at all. He just says, oh sorry, and he'll walk away. And that really, really gets me. I'm just trying to let him know that I care about what he's saying and what's in his head and that I want to understand him and that I would like others to be able to understand him. And he will not give me the time of day with this clarification anymore. So I'm really at my wits end with that. But I was asking him what are you saying, can you spell it? And finally he starts spelling it and I just wanted to know the last part. But he had to spell the whole superheroes out.
Shannon Chamberlin:And then he spells out squad. So I'm working with him on that because, additionally, he's wrapping his lips around his teeth and keeping his mouth closed while he does this, and so I'm working with him and I was like, oh, that's squad. And he says squaw. And I said no, squad. This went on and on and on. I don't even know how many minutes I stood there with him trying to work on him saying squad. But something interesting came of it him trying to work on him saying squad, but something interesting came of it. I got to where I was almost yelling. I mean, I'm just so aggravated at this point. It's a fucking syllable. Just say it, make the sound. You know. It's not squad, there's a D on there. Your name is not Jacob, it's Jacob. There is a letter at the end and I need you to say it.
Shannon Chamberlin:He just wasn't having it, but right when I was ready to pull my own hair out, he says I don't understand. Huh, I was like, wow, awesome, thank you for telling me that. I thought that you just were just sucking so bad. But anyway, I was like oh, thank you for telling me. So I said there is a D, it's squad. And I got really loud about it because at that point, like, how do you, how can you not understand? I'm showing you, I'm telling you, I'm forming the D with my tongue, I'm doing all of the things that I normally do. What do you mean? You don't understand. But I was really excited that he actually said that he doesn't understand. So anyway, I screamed it one more time the D. I spit the D out at the top of my lungs. And then he said it properly Squad.
Shannon Chamberlin:I was very happy with that, but it was hard. I fought for that one really hard. I had to really over enunciate, which I normally don't have to. I mean I have to kind of, but this was the hardest I think I've ever worked on a word with him ever, even worse than Captain America. It was the worst for me.
Shannon Chamberlin:So those are the things that have been going on, and we did have one kind of interesting comment that he made which I was very excited about because it showed a comprehension of the surroundings and the situation. He walked up to his dad here in the little room down here and his dad plays classical guitar. So he said hey, dad, what's up? And his dad didn't say anything because he was playing the guitar. And Jacob said playing guitar, playing guitar. That was very simple, but that was very cool because normally he does not have situational awareness, it seems, and he doesn't give a shit what you're doing and he'll act like he doesn't know what it's called, and so I was really happy with that. I mean, these are tiny little wins and if you're not paying attention you could miss them.
Shannon Chamberlin:When things are just unbearable, as they have been with us again lately, it's these little things that I try to make note of, and I try to appreciate in the moment, because I'm so consumed with how hard everything is all the time and it's really easy for me to just blow right by that and overlook it and not even stop to smell the flowers. I wouldn't have even stopped to recognize that this was pretty monumental. It wasn't just a couple of words. It was a couple of words showing situational awareness and showing that he knew the answer. When you know what are you doing? What's up? I see what you're doing. Is this what you're doing? Doing what's up? I see what you're doing. Is this what you're doing? And yes, as a matter of fact it is. And he didn't harp on it either. Usually he'll. If he picks up on anything or says anything to one of us, he won't stop saying it Play guitar, play guitar, play guitar, play guitar, play guitar. Dad, dad, dad, are you playing guitar? You know? So it was a really interesting conversational transaction. I guess I just thought it was pretty cool Every once in a while. That's all you got, you know.
Shannon Chamberlin:I would love to know if you enjoyed my husband and I doing the podcast together. He loves what I'm doing. He knows that I need to do it. I feel called. I have some solutions that I'm putting together and I just feel called to do this podcast for people to share because we're so marginalized and we're so screwed. You know he's interested in contributing more to the podcast episodes periodically, so I would like to know if you guys care one way or the other, or if yeah, yeah, I do want to hear from him again, or no, it's okay, or whatever. If you have any input, I'm very interested in hearing it. He thought maybe we could talk about the strain that this lifestyle has on relationships with couples, parents, things like that. I know that I touch on it a lot, I mention it a lot, but he thought maybe we could just do an episode on it. So if you guys have any input, please let me know. I hope that these episodes are helpful in some way.
Shannon Chamberlin:I always try to reminisce on something from the past and tell you something from my experiences at this time of life that we're concentrating on, and then move into something more current. So hopefully this format is working well for you. I got a significant number of downloads on Christmas Day, all the way through the night, and while that is exciting, it's also very saddening. I hope you guys are doing well out there. It's been really hard for me lately and I know it's hard for everybody all the time and there's always someone who's having a worse time than me and all that jazz. But I'm just saying it's been hard and I want you guys to know that I'm always out here thinking that. You know, I wonder if it's hard for them out there. I wonder how they're doing, I wonder how Christmas went. I wonder if everyone is safe, and I hope everyone is, you know, just happy and being able to enjoy their family a little bit here and there and I mean by family I generally mean your kid, because there is no one else, most likely, at least you know, for most of us. So I still have hope.
Shannon Chamberlin:It dwindles sometimes and since I'm having a hard time ending on a positive note, I think that if you've ever seen the penguin sing You've Got a Friend in Me on Toy Story you could imagine a little kid with autism and hardly any words performing exactly the same moves as the penguin. And if you haven't seen it, you should watch it on YouTube. Just that little scene. Maybe that'll cheer you up. In my next episode I'll go into detail about these therapy programs that I found and some of the experiences that we had while we were searching and waiting for services to come available for him. Thank you so much for listening. You hang in there, you're a superhero.