School Transitions Trigger Dysregulation In Profound Autism

A “senior year” photo comes home and hits us like grief instead of celebration, opening up everything we wish educators understood about profound autism and the gap between labels and reality. We also share what regulation looks like in our house, from sensory touch and breathing to the surprising toll of loud, nonstop noise. 
• the emotional sting of “senior” messaging for a child who will need extended services 
• hoarding and studying turning into agitation and destruction 
• frequent IEP meetings and the limits of school preparation for severe autism 
• why constant transitions can create school-day overload 
• the exhaustion of fighting for our child 
• using touch while teaching boundaries 
• massage, yoga-style slow breathing, and noticing chronic muscle tension 
• loud remodeling and what it can do to regulation and sleep 
You can always email me at contact.parenting severe autism at gmail.com. Make sure you check my summer supplies shopping cart. 

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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 can 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.parenting severe autism at gmail.com. There is some roofing going on, so if you hear loud noises, that's something I am not in control of today. My microphone should not be picking it up, but just in case, that's what it is. I hope it doesn't ruin the quality of this episode.

Returning To School And The “Senior” Label

SHANNON CHAMBERLIN 1:47

This week I wanted to talk about his return to the school, where I left off last time about that was when we thought the bus was returning him without even trying to take him to school. So that was his first year of school here in our so-called new home. By that I mean the home he grew up in until he was eight years old. This is a town that we're used to, but he has never gone to that particular school because it's the high school here. Shortly after he started school there, he started coming home with some cute stuff all about senior year. They sent a picture home of him sitting on the steps of the high school holding a big sign that said senior. Um, it really rubbed me the wrong way. I don't know. I still feel like a bit of an asshole. It still bothers me. I don't like it. I think that it hurts, if that makes any sense. I mean, he was 17, he's supposed to be in school until he's 22, and you're already sending me pictures telling me he's a senior when I know he functions at a five-year-old level, if we're lucky. I don't know. It just bothered me. I you know, I think there's a major disconnect or lack of compassion from the educators. I'm sure their hearts are in the right place, I'm sure they mean well, but I wish they would consider how they would feel if this were their lives instead of the lives of some strangers. How would they feel if that was their kid and that was their kid's future and someone that didn't know them was taking pictures of their kid holding a sign. I don't know, trying to normalize them. Is that what it is? I don't know. It just it rubs me the wrong way. It doesn't do anything good for my heart at all. I don't know. I don't know what I expect. I do know that no one ever did that to me when I was a senior in high school. So I don't know. You know, he he started coming home with little pillows that said senior and I don't know. I don't know. It just it upsets me. Of course he's such a cutie. I want to have the picture. It was hard for me to look at though. There was something about pictures with him as well, because right

When School Photos Become A Trigger

SHANNON CHAMBERLIN 4:03

around that same time I noticed he was finding any pictures of himself that were taken at a school, anything he could find. And he was kind of starting to hoard them and study them. And the more hoarding and studying of these pictures that he did, the more evil sounds and facial expressions were developing on him and within him, coming out of him, whatever. It just didn't seem healthy. I could just tell I knew after so many years of seeing him behave and monitoring what's going on, what's causing this, you know. I just knew it was a matter of time before he started destroying those pictures the way he was destroying all the other pictures. So I stole them back from him. To this day, they are still locked in my little safe. They're really cute. Some of them are freaking adorable. He's got this quality in him, and the photographers get lucky every time that they take these pictures. I don't care if it's a just a teacher or someone from the actual company that takes the pictures at schools, they get lucky every time because his little quality is that right at the time that they snap that picture, you can see it. Only his dad and I can really recognize it, but you can see it in his eyes. He's getting ready to go bonkers. And they just catch him right at that very edge. And I just wish they were like how the iPhone has the live photo so that you could see the next couple of seconds after that picture is taken, because I know that he is getting ready to just go berserk, bouncing off the walls or flapping or scripting or dooming or whatever. I just know, I just know it. And so almost every single school picture that we have of him, except for like two, have this look in his eye, like he's getting ready to fuck shit up, you know? So anyway, they are the cutest, and I'm sad that we can't have them on the wall, but photos really seem to trigger him. And by this time in our lives, his destruction had moved into his room again as well. So he had already busted up his door, like those four panels on your bedroom doors. It's an unfinished wood door. I don't know where it came from, but he busted it up and it's in pieces. It's still hanging on the hinges, but he busted those panels. I don't know if it was his head, hands, or feet

IEP Meetings And An Unprepared System

SHANNON CHAMBERLIN 6:31

or an object, but you can see light in his room coming through from the hallway through this door. We were also having multiple IEPs per month already. I'm within the first two months. We were having multiple IEP meetings. We had tried to get things set up for him ahead of time. We had been emailing the superintendent and all the people down the ladder to try to get stuff in place for him and to try to get them to understand his needs. But there really is no way to achieve the level of preparation that we need for the school faculty to be able to deal with our son. And that is a really tough place to be because our son is not the only child in the world with profound autism or severe autism. He's the only one in his school, and he still couldn't get services that he needed. So I think that's a huge problem. That's one of the focal points of my blueprint for the Safer Lifestyles respite communities. I really think that we need like a specialized education system for the people who would be willing to work with kids like ours, because really, most of the people that I've met in the therapy space and the education space are not prepared for my son. And I don't know where they're getting their educations at, but I know I've complained about this before. It seems like they think of a special kind of autism, like the one that's on TV all the time that everybody thinks is cute and cuddly, and then they get this rude awakening that there is more to autism than cute and cuddly and quirky. And then they're like, no, no, I don't, I didn't, I didn't sign up for this. I didn't get the memo on this, I never got the education on this. Everybody suffers at that point. And I just wish there were like an advanced way of educating the people who think that they can really hang in there and help our children. I think those people need the parents to be part of the education process. I think that the parents need to be allowed to teach anyone who's gonna work with their children about their children. Because, like I've said before, if you've met one child with severe autism, you've met one child with severe autism. You cannot apply everything that works with this kid to that kid and expect it all to work. Anyway, that that I could go on forever about that. That really it's a huge disservice to our kids and our families because the more frustrated our children get with not being understood, not being respected, being forced into some kind of weird conformity that is meant for neurotypicals, you know, the more that that happens to them, the worse it is for us. Just like the more kids you have, I don't care if they're neurotypical or not, that you send over to grandmas and they spoil them with sugar and candy and all that kind of stuff and then send it back. The more kids you send over to that situation at one time, the more kids come back to you from that situation at one time, and the harder it is for you to deal with everyone once they've been spoiled. So it's the same thing for me, but you get the violent behaviors. And I think in our case, it's because our kid is stuck in his head and he can't get out, and school doesn't allow enough time for him to try to get out of his head. By the time he is adjusting to his environment and to the people in his environment and to the demands being placed on him in that environment, it's time to move on to another environment or another activity. And it's just my kid can't keep

Schedule Overload And Violence Spillover

SHANNON CHAMBERLIN 10:07

pace with the regular school schedule. And it's a huge disservice. So he comes home, he actually doesn't even wait until he gets home. The violent outbursts start at school because it's like an instantaneous thing. It can only build up for so long. So let's say by third hour, he's already had what, six or eight changes he can't keep up, and they expect him to keep up, and he's just trying to figure out his damn name and what day it is, and he's gonna lose his shit. He's going to burst. So he bursts at school, and then it's really bad at home because now this is his comfort zone, and he honestly doesn't like this home. So the only thing that he does like is his parents, and that's not working out so well for him either. So anyway, I'm gonna detail in another episode the multiple IEPs and how those meetings were going. I recently found a bunch of notes from the school. I was I've been looking for them forever. I thought I had everything in like a stack, but you might be able to identify with this. Every once in a while I get all autismed out. I can't take it anymore, and stacks of information get thrown into some kind of storage, and I just need to clean my space and get it away from me. And then the next thing I know, I need that stuff, and I have no idea where I put it. So I'm kind of going through that right now. But since I'm trying to remodel the inside of the house to make him more happy, I am finding things that I think could be useful for this podcast, and some of the information from the IEPs is in there. I'm noticing that while these meetings were devastating to me, and there are details that I do remember and I want to share with you. There are a lot of details that I have forgotten, and it's just something that I do. When things get too painful, my mind is like, nah, I'm not gonna remember that. Sorry, you know? I'm kind of struggling with that, but I really want to share this stuff with you guys because I really think it's valuable. I can't be the only mom in the world who experienced this. I'm sure if you have not, you will. And I would like you to be prepared for the unexpected, because these things that happened to us were very unexpected. And if I would have known that people were gonna treat us a certain way, maybe things would have been different. I don't know. I'm a good planner. If I know something might happen, I can plan my counterattacks, you know. It does feel that way. It feels like I'm being attacked by my child, and I'm being attacked by his educators, and I'm fighting my child, and

Parent Survival Mode And Lost Notes

SHANNON CHAMBERLIN 12:47

I'm fighting for my child, and I'm fighting for myself at the same time it's just it's exhausting and confusing. You start to not even know who is on your side, if anyone. You don't recognize the good guys anymore. Because just when you think that somebody understands your kid, they'll do something completely out of line. And, you know, you're focused on the people who are intent on not understanding your kid and just making sure their agenda goes the way it's supposed to. All of a sudden you're blindsided by these other people who you thought were in your kid's corner, and it doesn't mean that they're not, but you start to feel like they're not because they make a couple of mistakes that were critical. And it just keeps you as a parent hyper-vigilant all the time, whether it's about the clothing or the lunch or the snacks or the reward system that they want to use at school. It's constant. Then you have the children who are not trained to deal with kids like ours. While my spouse did a great job going to the school and talking to the kids, I don't know. They have their lives that they have to live too. Everybody's gonna be all stressed out, especially when it's senior year. And I don't know. I don't know why. I really wish he wasn't put into mainstream classrooms. I still don't understand that. I had friends who were always in special ed. I never got to see them in class. So I really have a hard time understanding why we're forcing a child like mine to go into a mainstream classroom when he is so easily distracted and so easily upset, and he will hyperfocus on a person or what you know. I don't know. I just I just don't think it was the right fit for him. And I advocated for that, and it was upsetting. So I'll go into more details on that in another episode. I do know that he was not able to complete full days of school yet. You might remember that he wasn't completing full days of school at the other school after we had pulled him out for a year and a half and then put him back in and he couldn't complete a full day. Well, it was the same story here, and it was getting more difficult to be his parents each day, just because, like I said, those frustrations come home with him, and he's already unhappy, so it just made everything much worse. He was easily dysregulated despite the large efforts that we put in each morning before sunrise. I mean, you gotta wake up super early to make sure this kid has a good day, and we were doing everything we could, stumbling around in the dark, just trying to get it figured out, and I don't know, it just it just wasn't working out. So we'll talk more about that in another

Sensory Touch, Compression, And Boundaries

SHANNON CHAMBERLIN 15:22

episode. I wanted to talk about he's got um physical sensations have been a real focus for him the past several months. One day he was standing next to me as I was sitting on the floor. We take our shoes off in here, so he was standing there in his socks, and I just reached over and smacked the top of his foot a couple times with like a cupped hand, and it stunned him, and he just like his mouth dropped open and he just kind of stared down at his foot. And you could tell that he wanted more, and he like kind of moved his foot towards me. So now he'll just stand there with his feet facing me, and he'll just love it when I smack the tops of his feet. It's really funny. He looks surprised and confused, and then he laughs, and sometimes he'll say, more, more. So we get a kick out of that. You never know. Sometimes he wants compression on his arms, and I'll squeeze his arms and he likes it, and other times I'll try to do it and he'll just worm away from me, and he's just like, ah, don't touch me, you know. And he's learning that other people feel that way too, sometimes, because sometimes he'll be allowed to squeeze my arm or touch my back, and other times I'm like, I don't want to be touched. Stop it. And he'll take offense and he'll get really sad, and I'll try to remind him that sometimes you don't want to be touched, and that's okay. Uh not everyone wants to be touched all the time, and sometimes we just have to no touchy. And he's like, Oh, no touchy, okay. Kind of trying still after all these years to get him to understand that kind of stuff. And he'll ask with gestures, like if he'll be sitting in the recliner, he'll know that I'm behind him, going up the stairs or coming down the stairs. And you can tell by the way he's shaking his head that he wants someone to touch his head. Sometimes he'll flutter his fingers on the tops of his shoulders, waiting for someone to come and squeeze his shoulders. And uh sometimes he'll say, Touch me back, touch me back, which I think is really cute. And in the evening, when it's time for him to go to bed, he'll sit down in front of me on my lounger while his dad gives him his medicine. Then he'll give his dad his water cup so that he can lean back and let me hug him from behind, and then I'll give him a kiss and then he'll go to bed. But now he's starting to sit down in front of me on my lounger, and then he'll say, Touch me back. And the closest thing to him is my feet. So I'll start pushing on his lower back with my feet nice and slow, and he'll go, Oh, I feel good, I feel good. And he'll just start leaning back into my feet. And the more I walk my feet up and down his back, the more good he feels. It's really cute. And he acts like he's been just working

Massage, Breathing, And Body Tension

SHANNON CHAMBERLIN 18:08

like a dog all day. It's just funny. So we do get him a professional massage every month due to his tension from just being him. Even if he's not flapping, you can walk up to him at any time and see that he's got his feet balled up. He won't relax his feet unless you force him to do it. And so just that kind of tension is always on him. He's always like shaking um from being so tense. I know I've mentioned that sometimes his arm will just quiver, and that was concerning me. And I can see that it's just because he's not relaxing. So I have to get him to do yoga breathing, and he doesn't do it right, but you just have to keep trying because he'll just hyperventilate. But if we breathe in, he'll he'll breathe in and out real fast, but we have to set the example, breathe in real slow, and then audibly breathe out long and slow and forcibly, because that teaches him that this is still an exhale. So eventually he'll catch up and he'll figure out that okay, this is this is how we breathe. It is slow. And once he does like three to five of those, he starts to physically relax. But if you go a little longer than that, he starts to get tense again and or maybe he's bored, I'm not sure. The chiropractic is good too. The one that we go to says that she actually, in her previous practice, she focused on kids with autism for her treatment. I think, man, that that's really awesome. I would love for Jacob to go to her, but you know, you can only spend the money once. I really think that he has a better emotional response to the massage because we have taken him to chiropractic in the past and it didn't seem to do anything for him, but he was really high strung right before his treatment and during his treatment, which I don't think is great. And then after his treatment, he was just a jerk. And I don't know. I just don't think that's good for any of us for him to be in that situation. I don't know, it might be something like what I said earlier in this episode that maybe it's not that kind of autism that she focuses on, and maybe she doesn't even realize it because she hasn't run into it yet. That's a good possibility. I would like to try it with her, but you know, it's not something that I think one adjustment is going to show results. Maybe in the winter after he's done paying for summer camp and stuff like that. Maybe we can try that. But I really think for him and and kids like him who are so tense all the time, I think that lactic acid buildup in the muscles does cause pain. If it's not massaged out, it just is a it's a lot of pain. And I think it can contribute to the bad posture and everything just because of the tense muscles. So I think that's the place to start, at least for our guy. He's been having

Roofing Noise, Exhaustion, And A Question

SHANNON CHAMBERLIN 20:56

a hard time due to the roofing lately. This has been going on for like a whole week. He just seems super exhausted. I mean, he's not destroying anything, he's in pretty good spirits, but he is really exhausted just from I guess regulating himself from the constant banging that's going on. And he even insists on going to bed during the day, during his normal nap time at two o'clock, when they're banging on the roof right above him. I can't believe that he even wants to. And the other day he stayed in there until like 5 30. And then he went to bed at 8 30 and he was dog ass tired. It's just, it's really funny, but it must be the amount of stress that it puts on him to hear that banging. He complains about it every day, but he's doing really well, but he's exhausted at the same time. Have you guys, anyone out there, have you gone through something like that with home remodeling or roofing or anything that's loud and destructive or constructive, and had your child have some kind of a reaction to it? I'd love to hear what goes on with your kid in situations like that. So remember. You can email me at contact.parenting severe autism at gmail.com.

A Funny Moment Narrating Facial Expressions

SHANNON CHAMBERLIN 22:06

I want to tell you a quick little story about our son narrating my expressions one day. It was hilarious. Um, I was in the kitchen having a conversation with his dad, and he was just outside the kitchen watching us. Because when I'm in the kitchen, the rule is Jacob doesn't come in the kitchen. You're not doing anything, you're not gonna contribute, you don't cook, you don't clean, get out of the kitchen. So he stands just outside the kitchen, and that's where he was. And his dad and I were having some kind of conversation. So during that conversation, I'm very f expressive facially. I remember that I raised my eyebrows, and then I narrowed my eyes and kind of frowned, and then I kind of like shook my head and gave a small smile as I was turning away. And then at the end of the conversation, I gave my fake smile. So my fake smile is just I I show my teeth and it's not a smile, but it kind of looks like one. So that was it, okay? So I raise my eyebrows and I hear Jacob say, Oh, and then I narrow my eyes and I frown. I hear him go, hmm. And then I shake my head and uh give a small smile, and he says, ha ha. And then I give my fake smile and I hear him go, that was great. He just totally watched my entire conversation of expressions and made his own story. It was really cute.

Summer Resources And Closing Words

SHANNON CHAMBERLIN 23:30

In my next episode, I'll be sharing details from what should have been his first of many senior years. I'm gonna dredge up all those details and dish it out next episode. I hope you guys had a happy Memorial Day weekend. It came early. It's right now. I'm recording on Saturday of the Memorial Day weekend. And I hope you enjoyed it and I hope you guys are having a great summer. If you need any ideas for clean, organic supplies for summer, such as sunblock and bug repellent and stuff like that. Make sure you check my summer supplies shopping cart. And if you have any trouble accessing the links, you can always message me and I will shoot you a fresh link or fresh recommendations on products. Thank you for listening. Hang in there. You're a superhero.