What If The System Is Not Built For Them

We go back through the emails from our son’s first year in a new high school and relive how quickly “support” turned into constant crises. Then I share the most surprising update I have had in years!

• school fees shock and using McKinney-Vento homeless status while doubled up 
• early attempts at communication through typing and why it feels complicated 
• IEP meeting overload and what caregiver burnout looks like in real time 
• why regular school is not built for many severe autism needs 
• adult autism communication breakthrough 
• small functional wins


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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. This one's been hard to prepare for because I'm going through all of the emails from the school and trying to figure

Rebuilding The Timeline From Emails

SHANNON CHAMBERLIN 1:41

it all out. First thing I notice is perhaps I had the wrong dates. I feel like I've been telling you we moved here in April of 2017, but it was April of 2018. I can tell that because of the dates on the emails. So even in May of 2018, I was meeting with people from special services in this area that we live in now. Believe it or not, the information that we wrote down during that meeting got misplaced in between May and the middle of July. So I was reaching out to that special services department in the middle of July to tell them that I lost my notes and I need to speak with someone regarding enrollment, registration fees, the school bus. And I thought we had been told that we could speak with the school's meal planner regarding our son's dietary restrictions. So I reached out to this person to say that I need these things, and she waits two days to get back to me and she says, I am a new employee. I just got this email set up. I'm going to forward this to someone else, and someone will contact you soon. So that's how it started off. And school, I believe, starts a month from that email towards the end of August.

School Fees And McKinney-Vento Rights

SHANNON CHAMBERLIN 2:55

One of the issues we had immediately was the fee that the school wanted us to pay for our son to go to school. Um, when we were in Wisconsin, kids there are entitled to a free and appropriate education. And I was surprised back then. I remember being surprised by the free part because I went to school in Illinois and I remember having to drop off tuition checks to my high school in person. But then I forgot. I forgot that that was the thing. And when it came time to send our boy to high school, they wanted a large amount of money, and I didn't want to pay it, so I had to do some digging because we couldn't actually afford the school fees. And the school fees included access to textbooks and home games and all kinds of other things that our child never used in the past, and we didn't see a reason that he would use that in the future. So we thought that the fee should at least be adjusted because it didn't represent his actual involvement in the school. He never had textbooks, he's not in that kind of classroom, so there was really just no reason for us to have to pay for that. I had to do some digging. I reached out to some dude that I was directed to, but aside from reaching out to him, I had to do the homework first so that I could send him the information. And the information that I found said that if for some economical reason you didn't have the ability to pay the school fees, we might be able to help you out. And you have to be living in someone else's house, basically, which we are. So they call that homeless. And we actually qualified for homeless status since we had moved in with relatives and we were sharing a house. They called it living doubled up on people. Whatever, but at least we got the fees waived. So if you're in any kind of situation like that, apparently it varies by many different variables, but um, maybe you could look into stuff like that. In our area, it's called the Homeless Program McKinney Vento. McKinney-Vento. And you're eligible for these rights if you share housing with others because of loss of housing, economic need, or domestic violence. If you live in a shelter or a motel, or if you live in a campground, park, or car or abandoned building, which why would you admit that you live in an abandoned building? That would immediately put an end to that, wouldn't it? Um, but also if you are without a permanent address.

Early Wins With Typing And Food

SHANNON CHAMBERLIN 5:29

So that was what started out the year. We informed some of the special ed teachers at this high school about some of the activities he was doing at the nonprofit therapy organization in Wisconsin. One of the first things that she learned in Wisconsin about our son is that he wouldn't talk, but he would type. So they were having computer keyboard conversations, just sharing the screen. One would sit in front and type and then move, and the other one would read it and then type, and so on and so forth. So they had our son in October of that year in 2018 email us from class. It says, Hey Jason Huntley, that's my spouse. How are you? I'm feeling bored. Fall is here. I think fall is nice. During the fall, I Ike to pick apples. What do you like to during fall? Happy fall by talk to you soon. Um, yeah, that was cute. I don't think that was our son, honestly. I think see, he he's programmable and you can tell him to type stuff and he'll just type it. That doesn't mean he's thinking it and I don't know. I just I get irritated with that because I really don't believe that's coming out of his head. But anyway, it was cute, and we responded, but that did not continue. The thing about the dietary dude was really nice because in Wisconsin I had to make his food. Once we found out the foods that didn't agree with him and that were probably causing him pain and he couldn't tell us about it because of the eat for your blood type thing we were doing. I just started making his food, as you might remember from the stories. And that was quite an undertaking for me because we all have different blood types. We were all eating for our blood type, and I cooked for the dog too. So it was a lot, plus all the other crap that I did in my regular daily life. And I found out from this high school that the dietitian dude would help us with the food. He would make sure that there were certain items on hand. So they had like salads available and they would put chicken on it and stuff for him, you know. It was really nice. I just felt I felt so taken care of on behalf of my son for that. You know, it's it's really nice when you have food restrictions and you know that someone's honoring them without a fight. So that is the best thing I can say about our experience at

Violence At School And Constant Pickups

SHANNON CHAMBERLIN 7:52

that school. It did immediately start getting difficult because he was already difficult. It was just putting him into a different environment for him to have the same difficulties. And within a year of him starting this school, we had dubbed him Satan. I remember I was chatting with my dear friend, who also has a child with severe autism, and we were just starting our conversation, and then we got a text or email or call from the school saying that we needed to come pick up our kid again because he was being violent, and this was a common occurrence. I mean, at least at least two or three times a week, we had to go pick him up way before it was time for school to be out. And yes, we tried to adjust and everything, but I remember telling my friend on the phone, uh, well, we gotta go pick up Satan, so I gotta go. And she says, Don't call him that. But I mean, really, we felt like that's what he should be called. He was absolutely evil at that time. I haven't been able to find a lot of email communication from the school during that first year from August through December of 2018. But a lot of it was about food. They wanted him to have, you know, snacks and stuff and be able to cook in like a cooking class or something, but he can't eat all that stuff. And I caution them heavily around sugar. You know, they're like, can he eat rice krispie treats? And I'm like, well, I mean, yeah, but the amount of sugar that's in the way you make them is gonna make him really act up really badly. So just give him maybe a third or a half, or consider getting marshmallows that are better for him because they do sell them. So I was sending recipes that I use here at home that are sugar-free and gluten-free and stuff like that. So I sent a couple cookie recipes over. I think one was a chocolate chip and one is pecan. We did talk about a treatment plan in October of 2018. I got the treatment plan from the ABA people that were treating him in Wisconsin and sent it to the school, and I hooked them up together so that they could get records and behavior reports and stuff like that to stay on the system that was already working for Jacob. So that's really nice. I just wanted to mention that because if it seems like all is lost, it's a nice surprise that you can contact whoever it was that was working with your child and ask them to communicate with the new people who are working with your child. And it seems to me that they're happy to do so, and that takes a huge burden off of the parents. So then by March of 2019, I sent a message that says, we would like to view or have copies of all the videos taken of our son, both by the behavior specialists and by your staff. Please advise. So that means that between August of 18 and March of 19, there had been many videos already taken of our son. I actually did post a little clip of some of those videos mixed together on my social media a while back of him running with all the therapists sitting around him and trying to work with him, but also laughing at him as he was freaking out. And I mean, you know, yes, it sucks to see a room full of adults who are supposed to be helping your child actually laughing at your child, but at the same time, I do that too. I mean, what else can you do when he's just raging around? You're not gonna try to stop him physically and get in the way. They're all small women, you know, you just gotta let him go. So I get it, but it does hurt at the same time. It's like, God man, I wish I hadn't seen these women laughing at him and heard them on the video laughing. But even though he didn't have a lot of words, the words that he chose were at home and at school the very same, and it was just a big, booming voice, no, I can't, no, I can't. Sometimes it would be no I can't, but most of the time it's no, I can't, and he just gets boomier and boomier and more intimidating with each one. And he actually said that shit to me just yesterday, and he was just joking, but that's something that he always reverts back to. In fact, by February of 2019, I was already receiving emails from the special education director about other academies that might be able to help him and other programs that might be available. I was already being referred to directors and all these other people. That was in February of 19. And he started high school in August of 18. So it wasn't going well at all. So that means that between August and February, we have had multiple IEP meetings at this point. And I remember specifically, I think it might have been the last IEP that I was present at. I don't know if that's by my choice or if that's because of the circumstances. I got hooked up with something called advocatesforaccess.com, and I got a representative from there to start attending IEP meetings, and I think that might have been after the one that I'm talking about. I can see that we had IEPs all the way through September and October of 19. That's just to start you off with

IEP Meetings And Breaking Down

SHANNON CHAMBERLIN 13:25

this. But I remember being in IEPs, it seemed like every other week when he first started this school, and the last IEP I remember being at, I was just dealing with so much. These meetings had become so mentally challenging for us because I think that I mean, okay, granted, the therapists and the educators have a lot of kids they have to deal with. They have a lot of problems. Everything is different for them. And I can't compare their experience to our experience as parents, but I think it's different as parents, even though we have only one of the kids that they deal with. It's just that we have that kid all the time. We know that kid better than anybody. We're trying to communicate his needs for him because he cannot. And we feel that he's constantly being disrespected and that our parent law is constantly being disrespected. But also, when he's at home, he's abusing us, he's attacking me constantly, he's trying to run away. He has issues with food, he has issues with hygiene, he has issues with communication, he has issues with obedience, he has issues with pretty much everything. He's got these really neurotic things going on, as I've mentioned in the past, and it's just constant. So, as the mom of this boy, it's just like I don't know, I almost feel like a boxer where I'm, you know, I'm covering my head all the time. No matter what direction I go, I feel like I'm about to get pummeled in one way or another. I mean, sometimes I'm not even in the mood to stick up for this kid. Sometimes I would love to see him in a jail cell or something, you know, to to show him that there is something beyond hurting mom or whatever or hurting yourself or something, you know. But anyway, there are some times when I don't feel like sticking up for him and I have to, and I have to dig deep and I have to go into these meetings and I I have to listen to what he's doing to people at school and I have to stick up for his rights, all the while, you know, hiding the pain that I'm going through from living with him. But I just remember being at this IEP and listening to everything that they had to tell us about his behavior and his defiance and every just everything about him. They were saying that he was running through the hallways, he wouldn't stay out of the bathroom. One of the classrooms had a bathroom and he would just say he had to pee and he would go in there forever, and they couldn't get him out. So that became a thing. And to me, I'm like, well, why can't you get him out? You know, can't you do better? I'd I could get him out. Why can't you get him out? I don't understand what is going on here. You know, some of that stuff. It's just like, really? Is this really the biggest issue? But no, no, it's not the biggest issue. It's just one of the issues that's taking the most time. But he would run out of his classroom and run down the halls, and so everyone is afraid that he's going to run out of the school. And this particular school is right on a busy street. The speed limit is 25, but people go 50 around there all the time. They give no shits about the kids coming out of the high school at any time. So, yes, all of us are concerned with the eloping thing. He's also, I got a report that he grabbed a teacher's lanyard with her ID that's around her neck and pulled it and headbutted her. I got another report that he headbutted her from behind. And I felt so terrible because she's small, first of all, but you know, nobody wants to be headbutted by anybody. And it's just not even your kid. It's just some some kid, you know, is just gonna headbutt you. And she was so sweet and kind about it. I just couldn't believe that she wasn't more blamey, you know, like more attacking me, but she was just, I was apologizing profusely, and she was just so kind, and she's just like, oh, it's okay. I'm like, no, no, it's not okay. I'm so sorry. But I'm listening to all of these things at one of the first IEP meetings we were at, and I just lost my shit. I just started crying, and I could not stop. I couldn't stop. There were more and more people coming into this room. We were in like a lunchroom type of setting, I think, and there were just so many people coming in for our meeting, and they just kept coming and coming, and I'm just listening and listening, and I'm remembering all of the meetings that we had in Wisconsin when stuff started getting bad. And I remember sitting there thinking about um when he was at the nonprofit with us and we needed him to sign some documents because he was I guess when you're over 15 or 16, you have to sign your own name no matter what. And he had to sign his name. I know I told you about this where he uh had to sign his name and he signed Spider-Man. And I'm sitting there at this conference table listening and watching all these people come to basically testify against my child. And I thought about that where he signed his name as Spider-Man, and that was like my last acute memory of him, and everything else has been hell, and I didn't need more people to come in and tell me anything else. I just wanted them to stop, and I just wanted someone else to figure it out. I didn't want to hear anymore, I didn't want to offer any more suggestions, I didn't want to come back and do another meeting. I was just wishing that one of these people would just have some initiative and just figure it out for us because I couldn't do it anymore. I had done everything. I was still trying to get him everything he needed medically. We still hadn't been met up with a good doctor. The ones that we were meeting with, like I told you about that, Dr. Carlson here in Peoria, he said that um at this point there's nothing he could do to help him, which was totally a lie, you know, and I mean we're just being met with resistance at every turn, and that's what I mean by feeling like a boxer in a ring, having my head covered all the time, because every avenue we tried, we were just getting resistance, resistance, resistance. And it's like nobody wants to help my kid, but everybody wants to tell me how bad he is. I just don't understand. And I was just so grateful for that day camp that he goes to because they were the only understanding people and they were so good with him, but he can't go to camp all the time. Anyway, I just lost my shit in that meeting, not verbally or anything. I just sat there and sobbed. I could not function for the rest of the meeting. I mean, what? What are you gonna do? What are you gonna say? You know, you just have all these people coming in to tell you about how bad your kid is, and nobody can help. So that was uh the first couple of months of school, and that that's kind of set the tone.

Elopement Fears And Home Safety

SHANNON CHAMBERLIN 20:27

And I know that when he would be home with us during this time, uh, you know, he would try to run again, and we had a thing where his dad would block the front door and I would block the back door, and he would try to move me. He wouldn't mess with his dad, but he would try to move me away from the back door by like with his whole body to try to push my body with his body and you know, scratching at me and all kinds of stuff. And his dad can't see that from the front door because there's a wall, you know, it's just they're not across from each other, so he could hear the scuffle, but he couldn't see what was going on. And by the time he would see me, I'm all scratched up and you know, I'm all disheveled, and he's been trying to move me. But one day I um pushed him. He got up on me and tried to move me, and I put my fingertips on his shoulders, mostly on his peck muscles, really, and I just pushed him, flicked him with my fingers, and he had never been pushed before. Um, and he went back and he looked like, whoa, like he was on unsteady ground, almost like the ground was moving. And uh to this day, if you push him, even if you're messing around with him and you push him, he doesn't understand it. He doesn't understand how you can move his body with such little force that he could go flying. But yes, he was still being violent towards me at home, as well as all this shit that was going on at school. And there was one time, and I don't know, maybe I've told you this already, but his dad wasn't home for some reason, and it was just me and the Tweedles. And our son, and I was having trouble with him, and somehow the Tweedles both got on him and they started because he was trying to destroy the house and destroy himself. And I was like intimidating him verbally, but you know I don't do anything, so I'm just like, I have a lot of bark and no bite, and I was barking at him. And all of a sudden, the next thing I know, both of the tweedles have a hold of him and they're holding him down on the couch, and he's fighting. He's like a rabid dog. He's foaming at the mouth and growling and spitting and shit. I'm like, don't hurt him. No, let him go, let him go. And they wouldn't. The more I said let him go, the harder they grabbed him and the harder they pushed him down into the couch, the harder he fought. And I I couldn't believe what I was witnessing. I mean, they weren't hurting him, but I I don't like seeing him treated like that. Like I called animal control or something. It was just I hate that so much. And I know that I n maybe needed help, but I just never think that's the kind of help that I need. And I get something else every time I ask for help. So I was just appalled.

Speaker 23:04

And I finally I just stomped my feet and I threw my arms up and then down. And I said, Okay, everybody, stop touching everybody. Nobody touch anybody.

SHANNON CHAMBERLIN 23:16

And they all let go of each other, and it was fine. Like everything stopped, you know. But I was like, fuck, man, the more that you do that, the more he does this, the more I say this, and then it just keeps going. Just let go, just stop, you know. And that kind of stuff was going on at home, and you gotta go into this IEP meeting and just have these people piling in and telling you how bad everything is, and you just reliving everything at home and from the past years, and it's just all going through your head while you're sitting at this IEP, and I just couldn't handle it anymore. And I know that in the next IEPs over the coming months, um, let's say by August, September, and October of 2019, the emails mention a lot of inviting this organization and that organization into the IEPs. So what I'm trying to tell you is that he was in school for less than a full calendar year before they were trying to get him a placement in a different location.

Searching For A New Placement

SHANNON CHAMBERLIN 24:20

That means that they had decided that they could not provide for his needs and that they were going to pay for his tuition and travel to another location, and they wanted to start inviting these representatives in from all these different places to sit in on the IEP to find out what his needs are and I guess meet with us and make their judgment on our child from there. I will share more of that in the next episode. I will do a little more organization on this and share everything as it happened. So I guess I guess I'm doing it that way so that you can feel the full brunt of the reality of it. And if you are an educator or a therapist listening in on these podcast episodes, this is what you're going to want to hear. Um, if you're a parent, it might be a little too much for you in the next episode because it's all going to be all at once, but that's how I experienced it. So from one parent to another, I'm sharing it exactly the way it happened. You know, reading through these emails makes me sick to my stomach. I feel like I could just throw up everywhere. It's just so stressful. Ugh, I hate it. I hate it for anyone who has to go through it. I don't even see why our kids have to go to regular school because um this is too much. It's too much for us, it's too much for our kids, it's too much for the educators and the therapists. It's just not the right place for our kids. Not our kids. Our kids can't go to regular school. They deserve something better. I do talk about that in my presentation that I actually send it off to the Maha Autism panel, but I do talk about some options that would be more effective for the kids and the parents. But the most important thing is having a curriculum where our children are allowed to be our children and learn the way they want to learn, or not necessarily want to learn, but the only way that they can learn. And since each of our kids learns differently and has different interests and uh attention spans and stuff like that, it really should be more person-focused, individually focused. And the educators and therapists really, after they get their formal education, they need to get an education from the parents of the kids that they work with. Nothing can prepare you for working with these kids like real life experience. So that's something that I am talking about in my presentation to the Maha Autism Panel.

Training Gaps And Going Live

SHANNON CHAMBERLIN 26:57

And also I'm gonna, I think I'm gonna start doing some live streams on TikTok, possibly Facebook, possibly YouTube. I'm I'm not quite sure, maybe Instagram, but I think definitely TikTok. So if you want to send me a note and let me know which platform you would listen to more, I think in between podcast releases, so these are released every other Wednesday, and then the every other Wednesday in between that, I think I will try to go live and talk about some of these ideas and some of the struggles that we have that get overlooked by mainstream everybody. So let me know what you think about that. Of course, you can always drop me a line at contact.parenting severe autism at gmail.com. And now it's story time. Give me a minute to compose myself and I'm gonna tell you a story. Okay.

Story Time: Speech Comes Back At 25

SHANNON CHAMBERLIN 27:47

You guys, our son is about 25 and a half years old right now, and he has been forming full sentences deliberately. I am so jazzed. Um, 25 and a half, he lost all of his skills and his little vocabulary that he did have at 15 years old. So 10 and a half years later, he is deliberately forming full sentences. And I know it's deliberate, one, because they're full sentences, and two, because he's being very slow about it. See, they call him nonverbal because it's just a bunch of bullshit that comes out. Just anything that he can put together to come out at once, it'll come out. And they call that nonverbal because it's nonsensical. I I don't believe he's nonverbal. I mean, you you know how I feel about that. Anyway, so the other day he said at this exact pace, Jacob is sitting on the couch in Papa's house. And I wasn't even like making eye contact with him or anything, he just sat down and decided to say that. And I turned around. I'm like, yes, yes, you are sitting on the couch in Papa's house. That's right. Very good. And he says, Thank you. Thank you so much. I was so impressed because also when I was trying to have him do conversations, um, I had that conversation app on the iPad, he freaking hated it so bad. Man, did he hate it? And now he's having a conversation because when I said yes and verified his information that he gave me, he replied with the proper response. Thank you. He's also been doing that with these sentences. This has been over the past week and a half. Another one, just the other day, I came up from downstairs and he was sitting on the couch. I looked up the other hallway and I said, Oh, who's in the bathroom? And normally he would say something like, She's in the bathroom. So I said, Who's in the bathroom? And he said, Oh, he's brushing teeth. I was so impressed. So that means it's his dad is in the bathroom brushing his teeth. And he said it so calmly and like matter-of-factly, and uh, that is not normal for him. He normally can't make that connection to give me that much information at one time. And the other day, the day like of the day before that, I've just been mad writing all of this stuff in my notebook. So they're not in order, but it's all been within

New Sentences During Daily Routines

SHANNON CHAMBERLIN 30:27

the last week and a half. I brought his clean laundry to his room. So you remember the story that I used to do his laundry with him and I would help him, but he would mostly do it and put it away and stuff, but I would fold it a lot of the times and let him fold his pants or something like that. So we've been trying to do that. His dad's been doing a lot of the laundry with him, but I don't think he likes the way that his dad does laundry with him. I decided to um finish the laundry and handle it and bring it up to his room like I used to. And I said, Come on up here, buddy, help me with your laundry. He said, Okay. I dumped it all on the bed, I paired up his socks, and then I gave him the paired socks, unfolded, and I told him to fold them just to get him in the groove of actually doing some work and understanding what we were doing. So he was folding and putting away the socks, but he only had like four pairs handed to him and laid out in front of him. And while he was doing that, I folded everything else and I handed it to him one at a time, of course. And yes, I did after a while try to hand him three folded shirts at one time, and he got so confused. He was like, I need your help, I need your help. I said, give it back. So then I gave him just one shirt. He sounded so relieved, and when I began handing him his clothes, he knew I would tell him, um, this is shorts, put it in number three, this is underwear, put it in number one, because we used that hanging shelf soft thing instead of drawers now. I would tell him what it was and which slot it goes in, and he seemed like he really meant it. He was like, thank you, thank you so much. And I was like, uh, you're welcome. But he said it after every time that I gave him something to allow him to organize it. And that's what made me realize that maybe his dad isn't doing it in a way that he enjoys it, because he just seemed overly grateful. He seemed really relieved, like a ton of bricks was taken off his shoulders while we were doing our laundry together. It was really something to behold, you know, the amount of relief that was all over him. And when I got done, he was really happy. He could see all of his clothes just the way he likes, and he just kept thanking me profusely, and he really seemed physically more relaxed than he has been in a while. So I guess that's gonna be our thing again, because I like that version of him, and I think he does too, so I'm gonna support that. So another time, just the other day, I was making breakfast, and I asked if he was ready for sausage, eggs, and sweet potato, and he said, How about a sausage as a hot dog? And I was like, uh, I don't have hot dogs, but I do make him turkey sausage links. That's his sausage. So I showed it to him after I deciphered what he was trying to say, because that was not a complete sentence and it was a little disorganized, you know. But what he was saying was he kind of wanted a sausage sandwich. So I showed him the turkey links and he said, Yes, finally, I want sausage sandwich. And I was like, Well, damn, okay. My goodness. I don't know why he said it like that. Um, I don't I don't know. I think maybe we had skipped that for a couple days or something. I'm not quite sure. Maybe we ran out of sausage. I don't know why he said finally. Um, maybe it was that he's finally being understood. I'm not sure. Another thing is he's been calling me invisible woman. I don't know well what this is about, but you know, he used to sometimes call me tiny woman, and now he's saying invisible woman, invisible woman. The other day, after he had formed these sentences several days in a row, he said something while we were outside getting ready to take a walk, and I complimented him on his sentence structure and his good talking. And again, he said, Thank you, Shandal, thank you so much. And I was like, Well, you're welcome, thank you. And then we start heading down the road and we uh stopped at the end of the driveway real quick for a couple minutes. I don't know what we were doing, but we started to walk again, and he just blurts out, I'm talking much. And then I could see him trying to reorganize, and he tried to say it again a different way, and it just got more jumbled. But I was like, You are, you are talking very well. You're using a lot of words, good words in full sentences, and you are, you are really talking good. And he was like, Yes, I'm talking good. So I thought that was interesting because I think he's noticing it too. Like when you know you did a good job, you know, he's like looking back on himself like, you know, I am really using my words lately. I am talking, I am communicating, I'm getting compliments on it, I am the shit, I am good, you know? And I'm like happy for him because he seems to be getting a sense of accomplishment from this as well. And it's validating when I mean I'm I'm thinking that it's validating when you try to form a full sentence and get your ideas across and someone understands you and repeats it back to you and says that's good talking. So I think that this has really been his happy point lately. And then yesterday we were on a walk and he starts saying, ow, ow, ow. He really overreacts. I mean, if he gets a little twinge in his leg, he'll say, ow, and he he'll act like you can't walk. It's just ridiculous. And you have to be like, Are you okay? You gonna be able to walk? He's like, Yeah, I'm okay, you know? So he says, ow, ow, and he sticks out his tongue. And I'm like, Did you did you bite your lip? He says, Yes. And he complained about it for the whole walk. And our walks are like 20 minutes, and he just kept complaining and sticking out his tongue. I'm like, Did you bite your tongue or your lip or your mouth? And he said, Yes, tongue. And um, I was like, Well, um, there's nothing we can do about it. I'm sorry, be careful. You know, I don't I I'm there's nothing I can really do. I can give you some mint ice cream that we have, you know, or an ice cube or something, but um, you just have to be careful and don't bite your tongue. And we get all the way back home and we're looking at some trees that we planted recently and stuff, and he starts walking around with his head down, looking down, shaking his head, and he goes, just cut it off, cut out Jacob's tongue, cut it out, cut it. And we were like, No, no, you can't do that. He's in that much pain about his tongue. And I was like, Did you burn it or did you bite it? He says he bites it, but I tried to explain to him I just burned my tongue on some coffee, and that hurts too. But you know what else he did at that same time? The same right when we started our walk, his dad tried to give him a butterscotch. His dad has decided that he is of the age now, close enough to 50, where he can start carrying butterscotch in his pocket. So his dad tries to give him a butterscotch, and this is the second time that he's refused it. Um, but he says, No, I don't want it. Just like that. I don't want it, I don't want it. And his dad's like, okay, fine. He goes, I'm sorry, I don't want it. It's yuck, I don't like it. Keep it away from me. And I was thinking he had a butterscotch the whole walk the day before. And have you ever sucked on a candy, a hard candy, so much that it like cuts your tongue because it starts getting a crack, a long crack in it? I wonder if maybe that's what happened because his dad complimented him. He said, Man, this kid is so good. I chewed up my butterscotch 10 minutes ago. We've been on this entire walk and he's still sucking on his butterscotch. I'm like, that's because I taught him not to chew on his candy. But I think that he sucked on it to that point where it cut his tongue. I really think that's what happened, but we'll never know. And then today I tried to get him to put on his socks. See, he's got these uh, they're what is that, like Sherpa lined moccasins, and he's got sweaty ass feet. I don't know why he's got these mocks. I I didn't make the choice, obviously, but he's got these slippers and they're furry inside, and his dad wants him to wear socks with them so that his feet don't sweat as much and like ruin the lining or whatever and cause some sweat problems. So that's the rule. When you get up and you put your slippers on, you have to put on socks. Well, this morning I went to give him his medicine and he didn't have any socks. And I had just just a couple days ago, we did the whole laundry thing. So I'm like, why don't you have socks? We just did socks, and there were more than three or four pairs by the time we were done. There were plenty to get through the week. So I don't know what's going on with that. But he says, No, I don't have socks. I'm sorry. And I said, Do you have socks in your room? He says, Yes. I said, Okay, go get your socks. Okay. So he goes up to his room and he's like, Uh, um, Shandal, you better come up here. Uh, Shannon, I need your help. And he says, You you better come upstairs. You better come upstairs. But he was stuttering through it. It wasn't perfect, but this is something that he always does. I was like, Okay, I'm coming. So I go up there. I go in, I and I look in his closet and there are no socks. I'm like, where are your socks? And it's so funny to hear myself come out of him. He says, I don't know, man. That's exactly it's so funny because he'll just parrot me and it sounds like it's a mini me talking back at me. It's just so funny to hear myself come through him and what an influence I've had on him, being that he's not even mine. You know what I mean? It's just, it's just so funny to me. So that's my story. I think um I'm super excited about his talking. I hope it continues, you never know, with these things. He also ordered a haircut. He told me on a walk, he said, I want a haircut. And, you know, he was getting hot. And his hair is super short right now, but it's a little longer than the buzz cut because it's been a couple weeks. But he's ordering haircuts, he's he's saying what he wants, and I'm so happy about that. That is so useful in daily life. And it seems like he is a little bit calmer. A little bit. Like, not always. Some he's still destroying shit, like in the morning or in the afternoon or in the evening. It doesn't matter. He'll pick a random time of the day and he'll just go ballistic and mess everything up. But during the good times, he seems more calm, more put together, more sure of his life. He's been asking for specific foods. For instance, a couple Saturdays ago, instead of pizza, he said he wanted a cheeseburger. And we give him these turkey burgers, and we hadn't had any for a while, so he had no choice but pizza on Saturday. And as soon as he saw that we had turkey burgers, he started ordering cheeseburgers like nobody's business, and he even chose it over his pizza. I don't know, man. I'm just so happy about this development with his speech. He's just so calm and grown up about it when he talks. And I think uh what is impressing me the most is that he is having interactive conversations, like when I said who's in the bathroom, he normally wouldn't be able to answer that question. I mean, he just flat out would not be able to answer that question. He'll just look at me and make noise. So for him to say, uh, he's brushing his teeth, you know, like, whoa, that okay, great. Well, I know who that is because the tweedles don't have teeth. So obviously that's dad. But yeah, I just, hey, there is hope. I I never thought in a million years that he would get his speech back because he's not working with any therapist. He's not getting any attention from anybody, he's only with us, and we can only take so much of him. And he spends a lot of time in bed.

What Might Help And What Comes Next

SHANNON CHAMBERLIN 42:06

I don't know what's happening, but he takes a B complex and he takes vitamin C every day, as often as we can remember. And that's in addition to his trazodone, sertiline, and risprodone. So that's it. And then a healthy diet, um, and exposure to us in real life. We don't talk to him like he's a child. He's 25, so he is spoken to as an adult, just like everybody else. And I I don't know, but I am so happy to report this. I hope for you guys out there that you're having some breakthroughs or that you can look forward to things like this. I mean, it's just a surprise. I have no idea why it happened or how long it's gonna last, but I'm loving it while it's happening. In my next episode, I'm going to share with you all of these experiences I had from the high school with the other placements that they were giving us for our son's autism education and treatment. In the meantime, please share your stories with me and check me out on my live streams. Leave me hearts and comments and stuff, and let's see how that goes. I'm just trying to get more attention for the podcast and for the blueprint for respite communities for severe autism sufferers and their families and caregivers. And I hope you're enjoying your summer. Hang in there. You're a superhero.