Advocating For A Severely Autistic Teen In High School

We share what it looks like when school support collides with severe autism, from the first weeks at a new high school to the moments we realize critical details are being missed. I walk through the exact language and protocols that help our son regulate and why consistency across adults is the difference between progress and meltdown. 
• remodeling and environment changes at home to reduce frustration 
• heat, low energy, shallow breathing and the suspected link between vitamin B complex and behavior or speech decline 
• the moment our son says “I’m stuck” 
• why life skills, OT, speech and socialization matter more than academics for our child 
• early high school wins like the popcorn and coffee cart job 
• working phrases that interrupt escalation
• insisting the school call dad immediately for any self-injury 
• frustrations with vague incident reporting and the lack of timely OT support 
• reflections on staffing, caregiver consistency and a child’s need to feel cared for 
Please remember you can support this podcast in many different ways. Of course, you can always buy me a coffee by clicking the little support icon on your podcast player. You’re also able to visit my storefront by following the link in my show notes. Please let me know if you have any tips, tricks, or anything like that regarding school these days, please email me at contact.parenting severe autism at gmail.com. 

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Transcript

Welcome And Ways To Support

SHANNON CHAMBERLIN 0:18

Hello and welcome to the Parenting Severe Autism Podcast. I am your host, Shannon Chamberlin. I'm so happy that you're here with me today. Please remember you can support this podcast in many different ways. Of course, you can always buy me a coffee by clicking the little support icon on your podcast player. You're also able to visit my storefront by following the link in my show notes, and that's where you find t-shirts and tote bags, pillows, coffee mugs and wine tumblers, water bottles and phone cases, etc., with my closing line and the podcast artwork. Also, any products that you're looking for, if you've heard me mention them, I usually will have a link, and it doesn't cost you any extra, but it does help me a little bit with an affiliate code, such as the Angel Sense device or a TV protector, or some of the clean ingredient sunblocks and summer supplies and nervous system support products, the fingerprint locks, and anything else that I may have mentioned throughout my episodes. If you just click those, you can buy as normal. It doesn't cost you anything additional, but it does help me a little bit. I'd also love to hear from you. You can always email me at contact.parentingsevere autism @ gmail.com.

SHANNON CHAMBERLIN 1:33

Well, I've been doing some remodeling because our son is always complaining about how he hates this house. So the dining room where he spends a lot of his time is just that old brown paneling and just crappy old brown trim. So I took all that off. I saved the paneling, but I changed it to yellow. So he is really enjoying that, but he's still pissed off because now the trim has to be replaced and it still kind of looks a little bit janky. It's slow going. And the next project is to get his holes in the wall that he put from, I don't know, feet, head, hands, all of that in his bedroom. I'm gonna get those patched up, and he's got some really whacked out colors that he chose. Different colors of blue and green and a little bit of red, I think. I have a whole stack of paint swatches. And I'm gonna let him choose his colors for the walls and the trim. He seems very excited about that, but he's also very impatient and he knows that things seem to take forever when mommy

Remodeling For A Happier Home

SHANNON CHAMBERLIN 2:30

wants to do things. You might remember that story from um years and years ago at a Thanksgiving or Christmas family meal when we lived in Wisconsin when I told him I would put his food away and save it for later. And he goes, 20 years later. And I know that's how he feels about me. He's been pretty low energy lately. I don't know if it's the super hot heat, but he just isn't the same guy. And he really seems like he's getting old, to be honest. He doesn't have the same amount of energy once he's done his stimming, which includes a lot of jumping, he holds his heart and gets real pitiful looking and starts talking about how he doesn't feel good and it's his heart and all that stuff. And we're trying to teach him to breathe still, and he just can't seem to grasp the concept of breathing deeper. He's a very shallow breather. Um, another thing I've noticed, just kind of rattling all these updates off real quick. Uh, another thing I've noticed is that we did run out of the vitamin B complex that we gave him. I've got more now, but we ran out for a couple of weeks and he got really terrible. I mean, maybe it wasn't that, maybe it just happened to be the heat or the boredom or whatever, but he has been an absolute bear every day for the entire time that he hasn't had the B complex. And his speech has declined again. So I don't know, but I really think there's a connection to that. So, anyway, the reason my podcast episodes are a little more stretched out lately is the remodeling that I'm doing for him. So now I'm gonna start getting into our experience that happened here at this local Illinois high school that really was life-changing. I first want to mention something that I think I may have forgotten to mention, which was a really big deal for us at the time that it happened. It was right before he turned 15. And as you know, shortly after he turned 15, he lost all of his skills and the majority of his speech. I mean, he actually stopped talking and started just grunting and crying and screaming all the time. But right before that happened, he was being so terrible with us that we had to stop eating at the table together as a family, and we still don't, usually, except every once in a while we'll try it. But he was so bad that he would just make all of us miserable while we were sitting at the table trying to have a family meal. He just would run the gamut of emotions and constantly require input. And, you know, we're trying to eat, and it was just terrible and annoying, and we had to get up and leave and go eat in a different room and leave him to eat by himself, which I think is really lonely for him. But also, you know, does he prefer it? Is that why he does what he does to make us leave? He knows we're gonna leave. So I don't know. But he was doing stuff like that, and one day he stood up and he had this pitiful look on his face, and he looked like he was in pain. A lot of times, I feel like all the stuff he can't let out with words, he just internalizes it. It's just stuck in his body, and he just always looks like he's in pain. So he was standing there and he looked like he was in pain, and he said, I'm stuck, I'm stuck. And for me and his dad, that was kind of a slap in the face, like, wow, that's quite a thing for this little guy to say. Now we feel terrible for him again. So we tried to work with him on that, and we were very grateful that he was able to come up with that wording for himself, and we've tried to help him get unstuck. Sometimes, you know, his record will skip and he'll say the same thing just repeatedly, rapid fire, and you have to tell him your record's skipping. And I don't think he knows what that means, but it gets everyone else's attention and it kind of lets everyone else come down a notch with their anxiety around him because they are at least realizing that, you know, this probably isn't a chosen behavior. It's just he's stuck. So there are a lot of behaviors that he has that

Low Energy, Heat, And B Vitamins

SHANNON CHAMBERLIN 6:40

indicate that he is stuck, and he still says it to this day, but not as often. So every once in a while we'll hear it and it's still a slap in the face because sometimes his behavior is just so annoying and terrible and violent, and we feel like we're the victims. But then if we remember he is stuck, it kind of changes things. It's still hard to deal with, but it changes things because sometimes the behaviors are not voluntary. A lot of times they are with him, but sometimes he just truly is stuck and he needs something, some kind of intervention. And I remember around that same time back then, we were very excited as parents about his potential with that life skills program in Wisconsin. He was supposed to start attending in like his sophomore and junior year all the way through until he couldn't go to school anymore. We felt that he had outgrown, like many neurotypical kids, he had outgrown the academic curriculum and he needed something else, something like life skills. And for him, he wasn't going to have foods class or home ac or anything like that. So we really felt that it would have been a better service to him and those around him if he were included in a program that would teach him life skills instead of a program that made him do touch math and read stories. So he didn't get to go to that because we had to move. And also they had decided that he wasn't developed enough to go to that while we were still living there. So that was disappointing. They kind of dangled that carrot and then took it away. And I don't think that they gave him a fair shot because I think the reason they thought he wasn't developed enough to handle that program is because they were putting him in a box of academia and he didn't need to be there. He he doesn't need that stuff. He is not that kid. He's not gonna go work anywhere and do math is really frustrating because this school system thing here in our country is not supportive to someone like him. He really does need something more exploratory, and I'll say it again, a lot closer to a Montessori school type of thing, which you know, Montessori schools, they only let you go until you're like four. So it's just so backwards. Nobody makes space for our kids. He's always gonna be four or five. Just because he's 25, that doesn't mean anything. He should have access to programs like that because that's all he really can function with, and that's the only thing that's going to keep him interested. He has to be entertained, and school is not entertaining and the lights. I mean, everything. There's nothing about school that is good for our kid. Nothing. Anyway, we move here and we get into this high school. I'm going to start just with a few emails from the first month of school, which was August of 2018, after we had worked with the financial aid and dietary dude who was helping a great deal because I no longer had to send bowls of salads and everything to school and have them sent back in his book bag and getting everything all nasty. After all of that, he began in the middle of August. It was only August 17th when I got this email about his new job at school, and he was on the popcorn and coffee crew, which is super cute. They sent a couple pictures. I definitely have every intention of posting these pictures. I don't know why I can't keep up with social media trying to promote this podcast and show you guys what my kid actually, you know, experienced. One day it's probably just gonna be a big photo dump and you'll have to just figure out what they are. But they sent a couple of pictures. Um, he wrote on a piece of paper, he wrote the note about the popcorn. It says free popcorn from Mrs. Carlson and from friends. Well, the and is a plus sign. And he wrote all of that in his own hand, and there's two little bags of popcorn that apparently he filled. It's super cute, and there was also a like a Starbucks setup of coffee stuff. I don't know. I wasn't comfortable with him being on a coffee crew, but I didn't say anything because I felt that I was being overprotective. I mean, he was supposedly a senior at this time. I I don't know. You know, with the dexterity and everything, um, he doesn't handle hot drinks and stuff like that, but I wanted him to be able to have that experience of learning to pour things. And I don't know. I just he didn't get hurt. So it was a good thing that I just didn't say anything. I thought his dad would say something for sure, but I think we both had the same feeling, like maybe we're just a little too overprotective at this point. Let's just let him have the coffee man experience. And I think that they pushed around a cart around to the different classrooms and delivered coffee and popcorn instead of staying stationary. I think that's what was going on there. I thought it sounded really cute. And if his life at school was like that all the time, just doing things in service and being active and not sitting and trying to be academic, I would think that he would have had a much better time. Three days later, we got a notification. I think it must have been in uh the notebook because I don't have a record of it in email, but I emailed the lady, the teacher. This is the one that he headbutted, I told you about. So I'm going to share this with you because there are some key phrases that had been working for us at this time. Maybe they will help you, I don't know. But it says, We are sorry about his behavior today. I'd like to give you a few phrases that have been working for me lately. He changes frequently, and we always have to come up with new ways to deal with him. But these are the current ones. They can be used separately or consecutively. He starts acting up, and I would say, Oh, you're not listening? And then another one that I think I mentioned to you before he learned it in Wisconsin, he would make a hand gesture, like zipping his lips and locking it with a key. And he would say, Voice off, mouth closed. And but he would actually lock the throat with a key. It was interesting, and that's how he was telling me to be quiet. He would say, I need you to be quiet, and he would say, voice off, mouth closed, and lock it. And what a snot. Anyway, that was one that had been working that they invented at the other school. There was another one where, you know, if you say, please put your shoes on, or would you like to put your shoes on, those are the ways that we talk to him. And he would say, Okay,

“I’m Stuck” And What It Changes

SHANNON CHAMBERLIN 13:30

but then he would go and do something completely different, like chong around the room and torture everyone in his path. You have to intercept him by stepping into his path and firmly and loudly with authority say, What are you supposed to do? And then he would actually say, Shoes on, shoes on, or something like that. And then I would say, Okay. And then he would do what he was supposed to do. It's a lot of just acting, like I have to act like I'm aggravated and annoyed with him and be snotty, but it's the only way to really get him to realize that this is an interaction. It's not just something you can toss away. It's not something that's on TV that's gonna go away. This is real. I just have to be really loud and speak with annoyed authority to get to him. And then another thing is show me. So sometimes if I say okay, after he tells me what he's supposed to do and he doesn't do it, he'll keep going like shoes okay, shoes okay, put on shoes okay. If we're lucky, we'll get that many words out of him. Then I would say, okay, show me. Or he would say, Well, he wouldn't really, he didn't really talk a lot yet at this time. He was still doing a lot of screaming, but since he was in school and he had been in camp before that, he was kind of coming back with a few words. So he would say things like, I'm good boy, I'll be good boy, I'll be good boy. And I would say, show me. So no matter what he said, it was an empty promise until I said, Show me. I started using that command for pretty much everything because he seemed to really understand that there was action required with that, and it would stop him from his echolelia, it would stop him from putting on the whole show that he was doing of actually doing nothing and threatening to do things, and he would actually do it. So that was a program that we went through constantly all day. Oh, you're not listening? Voice off, mouth closed. What are you supposed to do? Okay, show me. The night before his bad behavior at school, I documented in this email saying last night I had to put him in his two-minute timeout chair for 23 minutes and tell him he couldn't have any dessert. He was being awful. He can be really fun, silly, and a prankster, but that guy is MIA, I guess, right now. We'd like to request that if you have an instance like today when he had to be removed to a different room, or even less dramatic than that, if he's just out of control for more than one class period, please call his dad. We're back to that again. A lot of these faculty members, they just really have this belief that they can handle it, but the fact is they can't. We can hardly handle it, as his parents. They have an entire classroom of kids, all different. They can't handle it, and they won't give it up. I don't understand it. I don't know why when the parent says we can help you, if you just let his dad's voice be heard, or let him know that you're calling his dad, even if you don't dial, just pick up the phone and let him think that you're calling his father, that's a huge help to you. Do it, use the tools that are being provided to you. We know our child. Maybe none of your other 24 children need that kind of support, but ours does. And we are asking you to use what's available to you because our child is accustomed to a certain method of care. We know what he'll do if you don't take advantage of the tools that are being offered to you. So I feel that in many cases our child has not been given a fair shake because the teachers and therapists have some grand idea that they know better than we do, and that they can handle him in their own way without the supports that we are offering. So when that happens, they suddenly realize they cannot handle him and they have pushed him far beyond his limits already when none of that was necessary. All they had to do was at instance number four in the morning, okay, okay, I'm gonna call your dad. It sounds like you need to talk to your dad. Do you want me to call your daddy? You know, just little things like that. They make such a big difference. I mean, I don't know why my kid is treated like he's not a kid. I mean, how many neurotypical kids, especially if they're like siblings, you know, playing one parent against the other or playing one good kid and one bad kid, you know, like there are so many games that kids play with their parents, trying to gain control of the situation. And my kid is no different just because he's special, he's still going to try to manipulate you, and maybe even more so than someone who's not special or is less special than he is. It's really a disservice to him that they never use the tools that we provide and beg them to use. I believe that this type of thinking has contributed to bad experiences that we've had as a family and that he has had as a student. I can't stress it enough that whatever it is that you as a parent are offering to the staff is probably not being utilized. And that's

Life Skills Versus Academic Schooling

SHANNON CHAMBERLIN 19:20

probably why you're always like, why is my kid acting like this? There's no reason for my kid to be like this. What is the school doing or not doing to my kid? I need a camera on my kid's backpack, you know, that kind of stuff that I talked about from uh 2010. I'm not the only parent that goes through that, and it's because they're not doing what you have given them. They're not doing it. My dear friend, who has a young boy with severe autism, has to bribe the teachers with cookies and donuts and cupcakes and shit just to get them to pay a little more attention to her kid, to not let him get cut by broken glass in the classroom. It's maddening. She shouldn't have to leave her house every single day to go bring teachers some sweet treats so they'll be nice to her kid or whatever. Obviously, there are more details than that, but it's it shouldn't happen. I hate to tell you, but if you're new to this whole school thing with your kid and it's getting worse, I can almost guarantee that it's because whatever you've introduced to the school is not being taken seriously. Okay, and then I had to remind them on August 22nd of that year. I said, Hi, I just wanted to check in because my spouse asked me to make sure everyone is aware that our son needs to actually see the smiley, sad face report system being used throughout the day for both good and bad actions and behaviors. We think we have convinced him to work for smiley faces. His current reward is my homemade chocolate and gluten-free donuts. You can use this as a reminder tool if you need to. And this email turns into a thread, so bear with me while I sift through this here. Um, that same day after he came home and we read the behavior notebook, I emailed and said, Hi, glad to see that he was a bit better for you today, wondering if there was something that set him off before or during the walk for PE, so he didn't have a great day. He had some kind of thing go on with PE. Also, could you tell us whether he was hitting his head with his hands or did he hit it on a table? He says he got mad and hit his head on the table and hurt himself. You see, this stuff should not be kept a secret. I understand that these teachers have entire classrooms to deal with, and that is one of my problems with the school system. My child cannot be in an environment that does not allow the educators and therapists. To report the exact things that happened during that day. And since there are no CCTV cameras in there, parents like us are left in the dark, left wondering and having to probe the staff what really happened to our kid. We have to ask the staff if there was something that set him off before or during the walk for PE because after the walk he threw a shit fit. Why don't we have the details? Those are important. And if they don't understand that, then they are doing him a disservice. He is not there for an education. He is there to have help being a human being. And he is not going to go work at McDonald's or go to Harvard or anything. He needs help. He's not the same as everyone else there. And for us to have to sit at home wringing our hands and try to be psychic about what our child cannot communicate about why he has a raspberry on his head, and all they say is that he hit his head. He hit his head at school. Well, there is a big difference. And in case you haven't noticed, my kid will punch himself, headbutt walls, headbutt people, or run across a gymnasium straight into a concrete wall. So how exactly did he hit his head? That would be really great information to know. Information that they decide is not important. And when you have to look into stuff like this, now suddenly you're a helicopter parent. Now suddenly nobody wants to help you or talk to you or have anything to do with you. And suddenly that paints your child as even more difficult than he already is, because now the parents are difficult. Well, why? Because they don't have the right information. They don't have all of the information. They're getting bits and pieces. And to be honest, that makes the parent feel like the staff is covering something up. And the more that we feel the staff is covering something up, the less we're going to believe that our kid did it to himself. Now we're going to start wondering, is he being abused again? Is it the kids abusing him? Did somebody else hurt him? Did somebody get in his ear and annoy him to the point where he had to go and slam his head into something because he can't get the words out to address their behavior? There is so much wrong with this. I should not have to send an email asking these questions. So anyway, the teacher responded within about 45 minutes. It seemed to me like his mood switched awful quick during PE. I thought maybe it was because we went outside. We haven't done that yet this year. He did hit his head on the table in my room. There was a lot of quote unquote crying and slamming going on. He calmed down just about as quick as he got upset. I'm on my way to an appointment, but if you want me to call and talk afterwards, I can. I relayed this message to my spouse, and he and I had to compose another email within about an hour after receiving that one. It says, my spouse wants to be called immediately if our son harms himself, no matter what. Scratching, kicking, hitting, punching, banging head or limbs, anything physically self-abusive. It is not allowed and will not be tolerated.

First Weeks At A New High School

SHANNON CHAMBERLIN 25:20

He's testing you. Please just call my spouse immediately whenever he's doing these things. We've never known him to be abusive to anyone else but himself, but if he ever is, my spouse also wants to be called about that. Once our son understands that you mean business and understands what you're going to do is call his dad, he will behave much better. It's clear to us that he knows he did a bad thing, but he needs to have an immediate consequence of having his dad called. I don't feel it's necessary for you to call this evening, but thank you for offering. Please just call his dad immediately if he deliberately hurts himself. I made sure my spouse saved the school number in his phone, then we know to answer the call, because see we were in sales and we would be in people's homes and stuff. So you're not gonna just answer a phone while you're doing a presentation unless it's important. I know you have other students and I can imagine it's a pain in the neck to have to call, but once you lay down the law that way, I don't expect you'll have to call that much anymore. Also, if he insists on doing the oh no fake crying crap, I highly recommend putting him in a chair with his forehead on the wall and no visual input for two minutes or until he understands that it's not acceptable. None of this stuff is allowed at home. We don't expect you to put up with it either. He is able to control himself when properly motivated. I'm sorry he acts like a six-year-old because he was 17 at the time. Now, regarding this message I just read to you, these are not new concepts. These are things that have been put in typed up letters for as long as he's been going to school. Every time we learn something new about him and we develop a way to help him get through it, we share it with anyone and everyone who's going to be in contact with him as an adult in his life. There is a letter, I print it out, and we give it to them, and then we go over it with them. And as you know, we started contacting these people at the end of June and then again after the July 4th holiday to try to get all of this ironed out because it's that important. So the fact that I have to reiterate all of this in an email, just a drip at a time, is really maddening. I mean, would you do that if you had a babysitter come over? Would you just not put the list of emergency contacts on the refrigerator and just wait for an emergency and then email the babysitter about what to do? Come on, you know, it's important. My kid needs to be kept safe. And the fact that you think you can handle it and you're just going to downplay the entire thing until I pull your teeth to get the real information is absolute bullshit. I don't know why these faculty members seem to think that they can just handle it. They can't. Look, you can't handle it. Okay? You can't. If you are an educator or a therapist out there listening to this, stop it. Please don't do that. Listen to what the parents are saying to you. If you if the parents are so involved like we were to provide a written letter about all the things that their kid does and all the things they've come up with to counter those things, take it seriously. Don't try to introduce new methods. Do what works. Make your day easier. Make the child's day easier. Make everyone who comes in contact with him have a better day just by going through the care protocol. Stop trying to reinvent everything. These kids are so particular. And if the parents have been able to find something that works, then damn it, use it. It's not a joke. It's not a suggestion. It's real. That kid is gonna go and give himself a concussion if you don't heed the warnings and listen to parent law. They're trying to help you. They're trying to help their own child. They're trying to save their own sanity. It is such a service that we provided to every educator he came in contact with, and such a disservice to our son that none of them thought anything of it. None of them wanted to listen to anything we had to say. It doesn't work like that. He has got to be treated the same way by everyone in his life so he knows there is no loophole, there is no crack in the sidewalk to slip through. It's this way or no way. That's the only way that he can develop. Because otherwise, he and his anxiety and his neurotic tendencies keep him trying to find the cracks that he can slip through. You're not helping. So the next morning, we get a call. I mean, this is like what? School's been in session for maybe two weeks. It's August 23rd. She says, Good morning. We have had an okay day today at 10 30 a.m. with just some of the fake crying. Yeah, he does it. He'll go, oh no, and then he'll just do fake coughing. And you just have to tell him to stop it. But no, no, they don't do that. Why would you do that? Just let him disrupt the entire school and then blame him later. Anyway, I understand he has some significant autism, and some of these behaviors are a result of that. Oh my goodness. Wow. I mean, two months ago we got here and started telling them about our son. Okay, anyway, this is all new environment for him, and he is new to us, so we are both figuring out where we fit in with each other. He seems to have little control of his behavior at school. Even after we talked to his dad on the phone the other day, I don't feel like that had much of a change in his ability to calm himself down. I have lots of sensory things in place for him already, and the OT people stopped by today and brought a couple of different things to try. They will be back a week from tomorrow to see how things are going and probably a few new things if needed. We will keep working at it. I'm okay with calling when he is self-injuring. The phone lines roll to the first available line, so we can't guarantee that my classroom number will be the one that shows up. If he just wants to use the texting app that you subscribe to, that is an easy way to communicate. Oh, I think there's a school texting thing. I am also more likely to look at that in the evening as opposed to me email. Personally, I think that they used the talking to dad thing in the wrong way if it didn't help him calm down. But this was a long time ago, so I don't really know anymore. I'm really upset about the whole uh new realization that he has significant autism. But what really stands out to me in this email is that the OT people stopped by and will be back a week and a day later. This is where the school system is failing our children. My child, I don't know about your child, my child, again, is not at school to learn academics. He needs physical education, he needs OT, he needs speech, and he needs socialization. Those are the things that benefit my child. He needs to play, he needs conversation, he needs occupational therapy. The fact that the school district, and it's not just this one, it's all of them, thinks that my kid only needs OT and speech once every eight or nine days, if that is horrific. Who the hell makes these rules? I understand it's like funding and though that's the excuse that they gave me, but they they I just I can't even describe how aggravating it is that he's not getting the services that he needs through school. And they when I pitched a fit about this over and over and over again, what they did was recommend supplemental therapy outside of school. The problem with that is the transition period, he's already at school. Somebody should be paid to give him a 45-minute,

Phrases That Get Behavior Moving

SHANNON CHAMBERLIN 33:30

three-day-a-week therapy session. He actually needs a 90-minute because it takes him 45 minutes to adjust to a new activity. And for us to have to take him, you know, okay, now he's home from school, which he goes to hopefully five days a week. And then, okay, now we can allow him his 45 minute adjustment period after school, probably while we're on the way to therapy, go ahead and screw that adjustment period up for him. And then when we get to the therapy office, give him another 45 minutes to adjust before he decides to cooperate. Oh, and then it's time to go home. And he gets nothing, absolutely nothing from that. He really was underserved, and this was only the first two weeks of school, but this is something that is common, and I just can't stand it for him. Cannot stand it. So then on that same day, about an hour later, that teacher says that the principal of the school has called an autism team to come to the school and give her some ideas on how to best support our son in the classroom. She's not sure what they're when they're coming yet, but she'll keep us posted. And I said, sounds good, thanks. Then she says the next day, FYI, the autism assistance team, will be here observing him and I on Thursday. She said they will come two or three times and stay for two to three hours each. He is behaving so well today, he is like a different person. He is still talking a lot, but no yelling, crying, and jumping around. It will be interesting to see how Monday goes. Have a good weekend. So I just want to point out that the day before is when they called dad and she said it didn't change him. But a little time for integration, and suddenly he's a different child. I don't have any notes that I changed anything at home for him. I just said, glad to hear it. Thanks for the update. Enjoy your weekend. That was the start of his school year. And the final one for the month of August that year is just me requesting a location for a kickball game. He really loves kickball. I didn't take him because I didn't get a response, but he really does love kickball. So anyway, that was the first month of school. And I didn't get anything else during the month of September, but the emails continue in October. So um I just want to say that while I was organizing all of these a couple weeks ago, it was really just sobering. I just I walked away from my computer when it was all done, and I just didn't have any words because I can read the subject lines, you know, and um like the first couple of sentences in my email preview. And it just really brought back a lot of the memories and those feelings of how my child has been really underserved already. It's just really sobering. And if you've already been through this, I know you know what I'm talking about. If you have not yet been through this much stuff at school, I hope it changes by the time you're dealing with it. I don't think that it will. I hate to say it, but I really think that robots would be the best because I just saw a post on the parent group on Facebook the other day. A younger parent said, here's a great idea for housing for our kids. And then I didn't even have to say anything because the first comment I saw was another parent saying, it's the staffing that's the problem. Yeah, that's there are buildings all over the place, but the people who are willing to learn how to deal with our kids and really help them are few and far between. The ones who are helping our children are not supported enough by the school district. The funding is all off, it's all wrong. The prioritization is all wrong, and the education for these people is all wrong. I've mentioned this before. They are not taught how to deal with kids like ours. They're taught how to deal with brain man, you know, it's a lot different for our kids. And when they don't teach that kind of stuff, then unfortunately, those educators and therapists are completely shocked and scared off. And there are so many therapists that come for home therapy that just never come back. It's real, I don't know. I the only way that I see for our kids going forward is really well-trained robots who don't have emotions and who can just do what's necessary to make our kids feel cared about. And with my son, that's what it is. He wants to feel cared about. Like when I put that don't bite yourself lotion on his arms, he thinks that's a method of pampering. He loves it. I do it every morning. And now, if he doesn't get it, like if his dad does the medicine distribution in the morning instead of me, his dad always forgets to put the lotion on and he freaks out. The kid just freaks out and he'll bite himself and he'll hurt himself and he'll do all kinds of shit because he doesn't think he's being cared for well enough. And it's all that kind of stuff, you know? And you can tell how he's been raised by how he treats other people. He was at summer camp last week, and the lady that he renamed Paige a few years ago, she uh struggles with headaches. And she said that she had a headache, a really bad headache, and he came up and said, Are you okay? Or what's wrong? Something like that. And she said, I have a headache. He said, Oh, you headache? And then he, I believe, put his hand on her head like he was checking her temperature, and then he leaned forward and kissed her head so gently and said, I love you. And it's just so cute because all he's doing is mirroring the treatment that he gets when he has a headache or when he needs some kind of care. So you can tell that he's been raised right and he gets treated right. But if you slip one little, little bit, well, it's the end of the world and he hates everything and he's gonna hurt everything, you know. But he his thing is just like I said, he just needs to feel that you

Self-Injury Calls And Missing Details

SHANNON CHAMBERLIN 39:40

care for him. That will go a long way with him and his behaviors. So when he's not stupid, he knows what we tell the school. He knows that we are telling people to treat him a certain way, and he knows when they're not. He expects to be treated the same by everyone in his life because we demand it. And then when he's stuck for six or eight hours with a crew who won't do it, yeah, he's gonna act up. Then the same way goes if you do it. I really think that the teacher calling his dad that one day carried over into the next day, he can't regulate that quickly to just, oh, five minutes later, he's fine. It accumulates. It's just something to keep in mind. Um, he can regulate a lot faster when it's us and he's around us all the time, but he's in a new environment. It's loud, there's a lot to get through and a lot to get used to, and a lot of sensory input that he doesn't get at home. So he's gonna act a little bit differently when you give him the same treatment that he's supposed to get at home, but I think eventually it all adds up. I really just don't feel he was ever given the chance at any place that he's been since he started getting more weird. You know, you grow out of the cute stage, like I mentioned before, and suddenly nobody wants to hang out with you, you know. So, anyway, that is my intro to his first year here at this new high school. Just to give you some stories, real quick. Um, he has been a real asshole lately. Um, we've had some really early morning battles. Um, I think what's going on is that, see, the grandfather has decided, because it's so hot here, I think he's just bored. Sometimes he gets tired of our son and he'll just be like, screw it, I'm going to bed because he he can't deal with it. So he'll go to bed at seven at night and then he'll get up at like three. And then everyone's wondering why our son is up at four, because he doesn't just get up and go outside and have coffee. He gets up, he's up and down the stairs, he he every single door in the hallway is deadbolted. So he's got this big key ring of keys that slams against the metal strike plate, and he's gotta unlock the door, and it's like seven feet from Jacob's head, basically on the other side of his door, and it's just ridiculous. So we're trying to approach the family about hey, how about you roll a pack of cigarettes for the morning during the day of the seven hours that you watch TV? Why don't you take an hour and go in there and prepare for tomorrow? I asked my spouse to have that talk with them, but I don't think he has yet. So I think I'm gonna be the one to do it because it's just pissing everybody off. But he's getting up all that early, and then he's getting in trouble for being up early, and he's kind of being a dick later, you know, at like two o'clock in the afternoon when it's time for his nap. He's just, it's over. He he doesn't want to be anywhere near anybody, and he will make you suffer if you're alive in this house. So the other day I was trying to handle him, and uh, usually the thing is to give him a bath, but um, it's been hectic with everything going on around here. So I gave him extra drugs and tried to get him to go to bed, and he just wasn't being cool at all. And his dad was injured, and he could hardly climb the stairs because he hurt his ankle. So I was just up there trying to hang with our son and get him to go to bed, and he goes to bed, and I was standing there hiding like I used to have to do when we first moved here. He was being that bad. So I'm hiding around the corner, and he he just jumps up out of bed, and this was like the third time, but he didn't expect me to be there. The house was dark, and he just comes out and he's already muttering like an old man, and he's uh looks at me, but didn't really care if I was there or not. But what I heard come out of his mouth before he even looked at me was fucking video games, and he looks at me and he just starts shaking his head, stomping off to the bathroom, and that's all he kept saying, fucking video games, fucking video games. So I was like, okay, maybe no video games tomorrow then, you know. And now I'm trying, I see. We've gotten a little bit lax on that because there's really nothing for him to do. He can't swim. There's used to be a pool here, and there's not. The pool across the yard in our neighbor's place is constantly full of people. There's just nothing for him to do. It's too

OT Gaps And The Autism Team

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hot to go for a walk. I can't deal with him when I take him to the gym to get an air conditioned walk. So it's just it's been hard. But this is what happens. We let him play on YouTube. And do Xbox in the garage, and even if it's just for an hour at a time, it turns them into a psycho. So this is a little issue that we're having lately. And then so the other day, this had nothing to do with video games. I'm just kind of rambling on about these stories. He said, uh, well, the tweedles were gone when I was making breakfast. And so we decided to try to have a family meal at the dining room table in the newly painted dining room. And he allowed us to sit there. While we were eating, I had uh he had turkey sausage links, eggs with ketchup, and sweet potatoes. He said, Hmm, so good, Shannadal. Thank you for food. I think he said, Thank you for breakfast. And then when he got done, he had like two bites left on his plate. We were all still able to be sitting there together. He said, Oh, it's so yum. I've never heard him say that. It must have been a really good meal. He really appreciated it. Super cute. You know, you just never know. Is he gonna be cool or is he not? But he was really cool that day. And then this morning, today is Saturday, I was cooking breakfast a l a few hours earlier, actually, because his dad was gonna go tubing with some people, and I wanted to make sure he had a good meal. So his dad said something about me being a a wife who loved him, and that's why I was cooking early. I think he said that to his dad. He said that on his way down the stairs, and then Jacob says, Are you a good girl, Shendal? I said, I try to be good, and he said something, la la la la, and I was like, What? I didn't understand you, what'd you say? And he straightened up and blinked his eyes and opened them real wide and looked like he was really gathering his words letter by letter inside of his mouth, and then he put his hand out to me a little bit, outstretched, all five fingers, and he said, very deep voice and very calm, I'll protect you. Okay, I'll protect you. I was like, Aww, well, thank you. Okay, that sounds good, thank you. And then he was super happy that I received it well. Um, yeah, I just love him. He's so freaking cute. So that's all I have for you today. It gets more interesting as time goes on with the school stuff,

Feeling Cared For And Closing Moments

SHANNON CHAMBERLIN 46:10

and like I said, this experience at this particular school was absolutely life-changing for us. I'm going to go through it little by little. As you can see, it's probably gonna take a little while. I wish I could go through all of it all at once, but it's hard for me and it's important for you. I don't want you to not remember some of this stuff. I think it's impactful and I think it might make a difference for you. Hopefully, you can glean something from it and use it in your own life. So hopefully it'll be a couple weeks from now. My next episode will come out. I thank you so much for sharing. I've really been getting an uptick in my subscribers and my social media, and a lot of emails have been coming in. So thank you so much for sharing. Please let me know if you have any stories of your own that you would like to share. Of course, I would keep it anonymous and I I would be happy to do that. If you have any tips, tricks, or anything like that regarding school these days, because our kid has he's 25, he hasn't been in school for a minute. So if you have anything to add that you would like parents to know, please email me at contact.parenting severe autism at gmail.com. Don't forget to check out my merch at my storefront, which is linked in my show notes at the bottom. I'm so grateful for you guys. Thank you so much for being here. Hang in there. You're a superhero.