Episode 4: Sickness and in Health

Phil and Shannon discuss Carson being sick, along with Medications the Good and the Bad. 

Transcript

SPEAKER_00 0:34

Is this our first time drinking together on this podcast?

SPEAKER_01 0:38

I don't think so.

SPEAKER_00 0:39

I think it is.

SPEAKER_01 0:41

Oh.

SPEAKER_00 0:42

I don't think we drank before. Usually it's on a Thursday. Now it's a Friday.

SPEAKER_01 0:47

I think you're wrong. I think we had some last week.

SPEAKER_00 0:50

I'll have to go back to the tape. You're right? Do you need a moment? Give me a pause for you and mute you.

SPEAKER_01 0:57

No, I'm good now.

SPEAKER_00 0:58

You're good now? You could talk normally?

SPEAKER_01 1:00

Yeah.

SPEAKER_00 1:00

Did you have to sneeze?

SPEAKER_01 1:02

No.

SPEAKER_00 1:03

Yes, you did. Watermelons. Watermelons. Watermelons.

SPEAKER_01 1:07

No, I had like an air bubble in my chest. I was waiting for it to rise up.

SPEAKER_00 1:11

That's decarbonation from your drink.

SPEAKER_01 1:13

Right. Yep.

SPEAKER_00 1:15

How drunk are you right now?

unknown 1:17

Not at all.

SPEAKER_00 1:19

Is there levels to your drunkness?

SPEAKER_01 1:21

Like is it does it uh Isn't there levels to everyone's drunkness?

SPEAKER_00 1:25

Yeah, what are what are yours? Like mine is like say, oh now you don't okay, now you know.

SPEAKER_01 1:33

Don't ever get like too drunk. I like to like just coast at like a nice just feeling good. You know?

SPEAKER_00 1:39

A buzz.

SPEAKER_01 1:40

Yep.

SPEAKER_00 1:41

No anxiety, none given.

SPEAKER_01 1:44

Yeah.

SPEAKER_00 1:45

Well, it was a fun week.

SPEAKER_01 1:47

Um I mean the first half was was fun.

SPEAKER_00 1:51

Well, no, Carson had a great week. He had a he I didn't hear, I think we talked about it today. We he didn't slam, I think, one door all weekend.

SPEAKER_01 2:00

Um did we mention that? That he likes to slam doors a lot.

SPEAKER_00 2:03

Yeah, I brought it up before because it doesn't slam his face. That was the thing.

SPEAKER_01 2:07

Lovely.

SPEAKER_00 2:08

Well, I'm just keeping it real here. Um, so he he had a pretty good weekend, and then my favorite part of the weekend was he's very particular about his like wagon that we push him in, and uh he likes his structure. So like when we go places, we always bring it so that way in case of a meltdown or in case anything happens, we don't have to carry him.

SPEAKER_01 2:28

And he's just like a break. He wants to take a break.

SPEAKER_00 2:31

Well, that yeah, that he has to be carried and stuff around. He's a right, he's a big boy. Yeah, so we went to this one place where the family that we were with had their daughter, and their daughter didn't want to be carried anymore. She or she didn't want to walk either. And we had a second seat in the wagon that we never really used, and we put it there thinking that Carson would have a problem with it. But when we put it up, Carson tapped the seat, and then she sat down and he was laughing the whole time that she was in the cart with her.

SPEAKER_01 2:57

Yeah.

SPEAKER_00 2:58

That was my favorite moment.

SPEAKER_01 2:59

Yeah, that was cute.

SPEAKER_00 3:00

And then he had uh he had a great day there, he had a great day at the water park, and uh all and he slept, I think he slept good all those days, didn't he? Didn't he sleep good?

SPEAKER_01 3:11

No, he didn't.

SPEAKER_00 3:12

And then we get done with the weekend, and the friends leave, and Carson gets hit with uh a cold flu, like everything. He has like a a cough, he has congestion, he has stomach problems. He's been uh battling through it. We sent him to school Tuesday. Tuesday, and then he got an incident report about him being sick, the wonderful parent report.

SPEAKER_01 3:35

Well, they didn't say like come get him or anything. I didn't, you know, she didn't text me till like almost four, but just like an incident report saying he was coughing all day and he wasn't running a fever, so they were just saying like watch it, but then watch it, don't bring him here, watch it.

SPEAKER_00 3:50

That's what they said.

SPEAKER_01 3:51

But then that night he was still coughing, and then the next morning I think he woke up with a fever, yeah. Right away.

SPEAKER_00 3:59

I think it was pretty close, and then he just hasn't been sleeping, and then he keeps waking up, and then day one he just admits defeat and lays in bed like he can't move, um, which is not like him at all.

SPEAKER_02 4:10

No.

SPEAKER_00 4:11

They say that um, especially autistic kids, like it when they're sick, like their their their mental health is healing. You ever heard of that? Like where like uh like a lot of their symptoms that they have, like OCD and and anxiety, a lot of that goes away in a sense. You don't okay. You think I'm making it up, don't you?

SPEAKER_01 4:30

No, I don't think you're making it up. I've just never heard of it before. But can continue.

SPEAKER_00 4:34

So Carson's Carson's a little different now with um him being off a lot of the medication or almost all the medication that he's on. The one thing that happens to Carson now is when he gets sick, like if he throws up or has stomach problems, uh, he gets severe anxiety. So he'll walk around the house, he'll pace, um whimper, moan, whimper, moan, and he just like doesn't know what to do because he doesn't like the feeling of it, obviously. I think it's which I think is a m is more improvement than it used to do, where he'd just basically shut down and have meltdowns almost around the clock, really.

SPEAKER_01 5:11

Yeah, but this is hard to deal with too because it's like you don't really know exactly what's bothering him. I just think it's his stomach and he's holding it because he doesn't want to go, because he doesn't want it to hurt his butt. But um why are you laughing?

SPEAKER_00 5:25

No, it's just funny. It's like stomach problems. You think it's stomach problems, I think it's nasal problems, and then like it's you know, but this is the second time it's happened with stomach problems. You don't have to hold it to two. I'm just sitting right next to you. And I heard you say two. No, maybe you're right. I but I think it's obviously he doesn't like being stuffed up either. No, he gets really upset about that.

SPEAKER_01 5:44

But yeah, but I feel like this one's harder in a sense because there's no getting out of it for him. Like you can distract him all you want, you can offer him all the food you want, he won't eat, he won't get out of his head. Um I don't know, it's just hard to deal with because it's just like you said, it's a constant pacing. And when we say constant, we mean literally all day. He'll make a track from the back door to the front door, do like a figure eight, and just be moaning the entire time.

SPEAKER_00 6:10

And it really bit me in the ass that I've been we've been taking him on the like weekend trips and doing fun stuff with him because now he's uh he's in constant search of me to take him out of the house.

SPEAKER_01 6:20

Um Yeah, and also last time he acted like this, um, you took him to the pool, kind of see if like him submerging and kind of would relax his body and kind of help him out. So I think he kind of uh you know related that to going swimming. So he's been, you know, getting your bathing suit out, getting his bathing suit, yeah, putting on his own water suit.

SPEAKER_00 6:43

He literally will turn on my turn on the shower for me to take a shower, and then while I'm in the shower, go to my dresser and get my bathing suit out.

SPEAKER_01 6:49

Yeah.

SPEAKER_00 6:50

Which is uh pretty pretty annoying. Smart and and intuitive, and it's it's a big moment for him, but it's also very annoying because it's like I don't like we're not gonna go swimming at five o'clock in the morning, it's just not gonna happen. Um I have to work today, so it wasn't like I can just go, hey buddy, sorry, we're gonna go to the pool, you know. And then Shannon actually took him to the pool today and he had how long did he last at the pool?

SPEAKER_01 7:12

Oh, like not like maybe five minutes.

SPEAKER_00 7:19

So he doesn't even know what he wants.

SPEAKER_01 7:20

No, exactly. So we go to the pool and he likes the big splash pad area and it wasn't working today. Um, I don't even know if they turned it on until like Memorial Weekend. That's the one. Or maybe they just didn't have it on today because it was broken or whatever. But he saw that it wasn't working. I had to show him like the button wasn't working. Um, and then he went and got filled up his little bucket in the kitty pool and then brought it over to the water table.

SPEAKER_00 7:44

Oh, we're good.

SPEAKER_01 7:46

Water table in the splash area, and then went, ditched his little bucket and went back to the wagon. And then I tried to sit there and hang out and see if maybe he'd get back out and swim. I mean, it was perfect. The weather was great, there wasn't crowded at all. Um, yeah, but he just wasn't done. I actually took him quite a few places today because his his cold was better today. He wasn't like actually like really sick. Still stuffy. Yeah, but he wasn't like super sick, he wasn't running a fever today. Um, it was just like I guess the stomach issues and the anxiety, and yeah, every time, everywhere we went, he didn't last very long today.

SPEAKER_00 8:21

Yeah, you took him to the his favorite park, you didn't want to do that. You took him to like an indoor play place, you didn't want to do that. Sensory gym, we took a sensory gym too.

SPEAKER_01 8:30

Yep, and then did I do that first and then the pool?

SPEAKER_00 8:33

Yeah, it was sensory gym. There's coffee, sensory gym, park.

SPEAKER_01 8:37

Coffee park, sensory gym, pool in the playplace later in the evening.

SPEAKER_00 8:45

I gotta I still gotta say this is I mean, I know it it still sucks seeing him like that, and it's hard to, but it I still think this is uh progress of where he was before. I really I really do. I think um it sucks for anyone. Like, like usually it's like, hey, let's go put a movie on and watch TV, which he doesn't want to do. Like he won't even want to watch his Kindle in bed.

SPEAKER_01 9:01

Yeah, he won't stay still enough for a movie.

SPEAKER_00 9:05

But I still think it's better than than it was before of complete and utter meltdowns, and then him being lost in some sensory thing just to get his mind off it. Yeah. So it's getting better.

SPEAKER_02 9:16

Yeah.

SPEAKER_00 9:17

But we'll see what tomorrow brings. Tomorrow brings another uh long day, but at least tomorrow we can try and uh get out of the house, keep moving, keep drinking, keep fighting, you know.

SPEAKER_01 9:29

Yeah. So um tonight before we left to go to the play place, he was upstairs, um, kind of hanging out with brother, kind of just pacing again upstairs. And I was sitting downstairs just trying to give him some space um to do his thing. And then he comes, and then Nolan comes down the stairs, and Carson is behind him, like pushing him. And Nolan looked at me like, I don't, I don't know what he wants me to do, but I'm gonna, I'm just gonna, you know, follow his lead. So he gets downstairs, and then I think he pushed him in our room to try to get you. And then Nolan just walked out of our room and was like, I'm not laying down with you, Carson, dad's in there. And then he brought Nolan his cleats. And I don't know if he brought Nolan his cleats because he wanted to go to the baseball field or if that was the only shoes that he recognized and Nolan's there. It was just interesting. And then I was like, Okay, well, Nolan will get dressed and we'll go. Because you know, Nolan was didn't have a shirt on because he was just relaxing at home. But I was like, and then we'll go um go somewhere. And then he wanted to go in your truck, he would not go in my car.

SPEAKER_00 10:35

So oh, you guys took the truck, huh?

SPEAKER_01 10:37

Oh, you didn't know that? Yeah, we took your truck.

SPEAKER_00 10:38

Did you put gas in or anything like that?

SPEAKER_01 10:41

No. It didn't need gas, does it?

SPEAKER_00 10:44

It always needs gas when you have to use it.

SPEAKER_01 10:46

Oh no. Well, we didn't go far.

SPEAKER_00 10:47

Yes, you did.

SPEAKER_01 10:48

No. Yeah. Oh, that was that was cool.

SPEAKER_00 10:53

Another cool thing.

SPEAKER_01 10:54

He was trying to like involve the whole family.

SPEAKER_00 10:56

Yeah, he likes to do his weekend trips. I told you, it's it's it's a big thing of what he's he's into now, which is which is great. He's he's but again, usually when we do the weekend stuff and then we go somewhere, usually he's ready to be home and play out back or you know, play upstairs, or you know, have his alone time. But when he's sick, he he really wants it's like he constantly wants me to lay in bed with him, but then he doesn't want to lay in bed. And then it's you know, it's like, let's go here. That'll make me feel better. Let's go here. Um, but when he's at his worst, it's just literally laying in bed and just laying there kind of lifeless. It's really sad. So he won't do very much, but yeah. Again, it's I still think that's progress. Yeah, at least that's what I tell myself when I drink. It's progress. It's not four steps back anymore. It's maybe two steps back versus four steps back, you know?

SPEAKER_01 11:46

Sure.

SPEAKER_00 11:47

Sure. You don't agree? Is that your way of saying I don't agree with you? Husband, I don't agree with you.

SPEAKER_01 11:52

Husband, I don't agree with you.

SPEAKER_00 11:54

Yeah, what is it then?

SPEAKER_01 11:55

No, I just don't know where you're going with that.

SPEAKER_00 11:59

Four steps up versus two steps or two steps.

SPEAKER_01 12:01

Well, no, because you brought like the alcohol into it and stuff and just Oh, I always bring the alcohol into it.

SPEAKER_00 12:05

I'm just making a joke about the alcohol.

SPEAKER_01 12:06

Yeah.

SPEAKER_00 12:08

Everything's not so literal. I thought you'd know that by being married to me for so long. You don't agree?

SPEAKER_01 12:14

No, I'm just I am, I'm just agreeing.

SPEAKER_00 12:19

Well, let's I mean, when when it was before, I mean let's talk about the medication that he was using before. I mean, I think that's a big thing. What's the what's the biggest medication do you think has has had the best effect on him, would you say?

SPEAKER_01 12:36

The sleep medicine.

SPEAKER_00 12:38

Fair point.

SPEAKER_01 12:40

Um yeah, as soon as that started kicking in, he started getting like, you know, actually getting sleep. I mean when we first started it, I don't think it was like it wasn't like right away, like eight hours a night, every night, but it was a big uh improvement from what we were dealing with before.

SPEAKER_00 12:56

So that medication is um is uh uh hold on, hold on. Not with the G, it's uh not 10x, it's hold on. I thought it'll tip my tongue. I just picked it up this week. Hold on. All right, what's the medication name?

SPEAKER_01 13:12

Clonidine.

SPEAKER_00 13:13

Thank you, clonidine. Clonidine is what we've used that we made them well, I don't know if it was a mistake, but why we weren't seeing such good effects with effects with it before is we used to put it in a bottle of milk for him and he wouldn't drink it, he would drink it off and on, like in kind of inconsistently, so we don't really know how much he got. And then um it was never on a schedule, so it was kind of all over the place, meaning that he he still didn't have a bath like a bedtime routine, it was still back and forth because he was either overly manic or he wouldn't focus enough to get in the bath, um, or you know, have his routine altogether. I think eventually he did, and then then it was like he got the bottle, and then he would kind of fall in line with that, and then it seemed to work out after about I'd say about a year, would you agree? Something like that, before like started seeing like a consistent routine.

SPEAKER_01 14:04

Maybe I don't know if it was that long. But see, I know when I know we were talking about medications, so I don't got my timeline and my notes and all that, but anyway.

SPEAKER_00 14:13

Stop critiquing the show and just just go with it.

SPEAKER_01 14:15

No, I'm just saying, like, I'm trying to remember.

SPEAKER_00 14:19

I know when we were in California, he basically had it where he it was all over the place. And then he you're right, it started out where like because before he was a couple hours of sleep here and there, yeah. He's always off and on. He'd wake up four or five times a night. Then we started this, the we tried melatonin that went nowhere.

SPEAKER_01 14:37

No.

SPEAKER_00 14:40

What was the was it like liquid form where you tried with melatonin?

SPEAKER_01 14:43

Yeah, we didn't try very often because it didn't work. We tried wait, I think we had drops, and then remember we had that melatonin like like um bubble bath or oh yeah, and that did like the reverse effect and made him like even more crazy and hyper and active. Which we didn't know that sometimes that could happen where melatonin can have the act like caffeine instead of yeah.

SPEAKER_00 15:08

We're not scientists, I didn't know any better than that. But then when we got them, we got the clonidine, that was the difference maker where again it was when he got it, he was consistently asleep. I think it was like four hours, maybe at a time or something like that. Maybe more. I don't know. It was kind of off and on.

SPEAKER_01 15:22

Yeah, I'd say it was a little bit more.

unknown 15:25

Good.

SPEAKER_01 15:25

But there was still times where yes, he would wake up in the middle of the night and be up for a couple hours. But again, it was an improvement to what we were experiencing before.

SPEAKER_00 15:34

Because we used to have to take him for drives, or Shannon did every time, like it was consistent. And then sometimes it could be like where Shannon's just too busy or too tired to be on the road, then I'd tag in and then have to go up and down the freeway seven or eight times just to get him to go to sleep, and then turn around and he'd you try everything. And he I I he literally wouldn't have his kind on the back, he would just stare at the window and still be wide awake. It was tough. So since we moved out here and since the Mirth therapy, though, um, he's been on a great schedule. He's been um, I would say arguably his best schedule. But it's been usually gets his medicine, his bath, gets his teeth brushed, cleans his ears, all the stuff.

SPEAKER_01 16:11

I'd say in the last like couple months, it's been is when it really started getting really good afterwards. Is that when we dropped off? Yep, yeah.

SPEAKER_00 16:18

Yeah, yeah, I think you're right. It was really great. And then so that's I think you're right. That's the best medication. Um the Prozac, I I think we we he's on that for ADHD.

SPEAKER_01 16:31

Um Yeah, the wasn't maybe I shouldn't say this now, but say it, please. Wasn't the reason we introduced like he's he mentioned it, our doctor mentioned it at the beginning, and we were like, no, we're gonna just try this other medication first and see what happens. And I think the reason that we introduced Prozac and actually gave it to him was A to help with like the hyperactivity and anxiety as well, but also I thought it was to help because he was being really aggressive, and he said that would tone down like the aggression.

SPEAKER_00 17:01

It's a combination of things. It was yeah, it wasn't, it was just it was it was that too, but yeah, because it's like we had to go through like layers of doctors before we even got to medication. It was our primary doctor or his primary doctor, then it was a subdoctor. There's like a mountain of people just to go just to even try it, because we were it was getting to a level of aggression that we didn't know how to handle, and then um, and again, the sensory stuff of him like rubbing his hands raw basically and against the concrete outside, and then he would like do it in the like in our backyard until he had blisters all over his hands and he couldn't like he wouldn't even like care or like yeah. Uh the one of the worst ones I remember he had a huge cut on the back of his of his of his ear. It's like he didn't even notice it.

SPEAKER_01 17:43

Um I don't remember that.

SPEAKER_00 17:44

I have a picture of it if you want to show it to you. It's disgusting.

SPEAKER_01 17:47

Do you remember what it was from though?

SPEAKER_00 17:48

Headbanging, I think it was. It was something severe. Like he had a really like it was like it looked like a gash on the back of his like ear, and like he wasn't even like bothered by the by the pain of it. And it just looked like it was an open wound on his head. Yeah, it was disgusting. So we didn't know how to handle that, and then uh we went down that yeah, we tried that.

SPEAKER_01 18:06

I don't think I remember now what we're talking about.

SPEAKER_00 18:08

I'll show you if you remember this picture of it. It was like it would and then I think he reopened it sometime.

SPEAKER_01 18:13

Um But to be fair, he didn't even start doing the headbanging thing until he went to the the ABA clinic. I'm not blaming them, I'm just saying like it's just I had never really seen it or like hadn't seen it much. Yeah, but like once he started there, it was happening all the time.

SPEAKER_00 18:28

It was all the time, all day long.

SPEAKER_01 18:30

I mean, he wasn't even he was there for like five hours all day.

SPEAKER_00 18:33

Well, he had and he had a like a like a really big tolerance level for pain. Like he broke his collarbone falling off a trampoline one time, and uh like Shannon took him to the ER and everything like that, and obviously him not being able to tell us what was wrong, Shannon and the doctors just tested him for concussion, and then I think a couple days later we see a little bone picking out, and then I had to take him back to the a week later to the hospital.

SPEAKER_01 18:53

No, I think I said something during the ER, like we're not gonna do an X-ray, and they were like, Oh, because he he was scared and didn't know what was up, and he actually was kind of shaking from pain. So he didn't the you know, he didn't want the doctor to examine or whatever, so they decided what to not do the x-ray. And then a week later we noticed I felt like a huge lump on his collarbone, and I Googled it, and they're like, Yeah, that's a sign of a break. So we took him to his regular doctor.

SPEAKER_00 19:19

I took him back to the hospital and then I had to hold him down for an x-ray, which was pretty rough.

SPEAKER_01 19:24

And he had like what like a hairline fracture or something. It wasn't like too severe, like it was just something that was gonna happen on his own. But he remember he was isolating his arm by himself anyway.

SPEAKER_00 19:32

Yeah, his chicken wing, yeah.

SPEAKER_01 19:33

Yeah, like he would hold his elbow in, tucked in, because he didn't want to put any pressure on it.

SPEAKER_00 19:37

Like he's holding a football.

SPEAKER_01 19:38

He didn't have to. They gave us an arm sling, but he didn't have to wear it.

SPEAKER_00 19:41

Yeah, he was already kind of doing it anyway, so it just didn't make sense. And I mean, I think it healed fine. He was pretty much back, he was back to his normal self after a couple weeks. But um so a lot of that stuff, and the we brought all that stuff up with the medication, and then it was like it then it seemed like he was kind of brought back to reality with it, but and then I think the was it so it was it was the clonidine for nighttime, it was the Prozac daily, and then we did the Guan Fazine.

SPEAKER_01 20:07

Like I said, Prozac we didn't do until after we had already started Clonidine and Guanfizine. We did those first, and then we added Prozac, probably like a couple months later.

SPEAKER_00 20:17

What is the worst medication he was on?

SPEAKER_01 20:21

I don't think they were like maybe just for him. You don't say it's no, I don't think they that they were bad for him either. It's just with the guanfazine, we didn't realize that that's the reason he was taking naps all the time, and that's why he was always so tired.

SPEAKER_00 20:36

Well, I also think it was also why he was even more crabby and more agitated. If you think about it, him being so tired and being like what he was, and then But yeah, he would always he wouldn't nap at home.

SPEAKER_01 20:47

He was for a while, but yeah, then he he would nap like again, he would go to ABA, he would go to school and he was napping, and it's like you're like, Oh, that's not normal for him to nap at his age. We're like, Yeah, we know, but we didn't really think about oh, it's the medication until what like maybe four or five months ago.

SPEAKER_00 21:05

That's how long he was on it, like the thing was two and a half, two and a half years.

SPEAKER_01 21:08

Yeah, about almost two and a half years.

SPEAKER_00 21:10

Two and a half years of him being sleepy and tired, and us not knowing that it was the medication. Again, it was at home, he wasn't like that. But then when he went to somewhere where he didn't have the stimulant of his Kindle or the stuff that he was comfortable with, then it was like he's like I saw a video of just at his recent ABA they said or that he's at now. They sent us a video of him eating lunch, and he was like just nodding off like he was like on like heroin or something like that. It was crazy looking his face of like just half asleep and then waking up and kind of nodding in and out. And I was thinking, and she's like, Are you worried about this? And I uh the doctor or the ABA said it said that. And I I said, Well, I don't know because he slept eight, nine hours the night before, so I don't know what that could be from. And then I think we talked about it, and then it was uh after the second Mirtherapy where we saw kind of no difference, and then we thought, like, why is he not reacting to it? and we kind of thought about more and more and then I think he got sick. And when he got sick, um, because we tried other things as well, we took him off it completely. And he had like a he was having like a great like he was just happy.

SPEAKER_01 22:13

He seemed like to be upbeat and it seemed like right away like after we took him off the confusine right away at school there no naps.

SPEAKER_00 22:20

No naps. He was like energetic and laughing and happy and like did that make you feel like we messed up for two and a half years?

SPEAKER_01 22:27

How did that make you feel not not really because it's not really I don't really it wasn't we didn't know to look for that.

SPEAKER_00 22:35

We didn't know like that would we were never told that was like a side effect and you know the doctor I remember the doctor telling us the opposite like he would be drinking a cup of coffee. Like that's what it would that that's what it'd be like he'd be like Yahoo and then be excited about it. I don't remember him telling to be sick.

SPEAKER_01 22:47

He said that about Prozac too I think but I do think he'd have said it about the Guanfazine too that's why when we started Guanfazine we had to give it to him at night so that his system could like adjust to it and then start giving it to him in the morning. Yeah I mean I I yeah it's it's it was that's what I was going to say so pretty much right away after we got took him off of it at ABA there was no naps and then so our plan with the doc with our neurologist was to still keep him on the like still keep the medication but use it as just an as needed basis like if we noticed like he was super manic and not calming down like not able to focus like at school and at home then we can give him a dose um and then so like a couple weeks after we had stopped giving it to him we he woke up like super early one morning it was super manic and all over the place. So we gave him a dose before he went to ABA. And he slept and then he took a nap that day and so then his BCBA was like hey he napped today did you guys give him guanfazine and we were like actually yeah we did I just forgot to mention it at drop off because it's been a crazy morning. And she was like that's so interesting that how no naps and then she's like I could just tell right away like they must have given him guanfacine because he hasn't napped in like weeks.

SPEAKER_00 23:58

And we were letting the clinic use it as an aden basis as well if they saw something severe but he they you but he before that he had an afternoon dose that he had to take there and so he was um yeah so he was on a morning dose and afternoon dose and when did we start doing that though?

SPEAKER_01 24:12

It wasn't always like that.

SPEAKER_00 24:13

No it was about three four months in of well whenever we did the moved here right? Yeah it was after we moved here.

SPEAKER_01 24:19

Okay.

SPEAKER_00 24:20

Because they were using syringe as like a part of things so we can get rid of the bottle.

SPEAKER_01 24:24

Right.

SPEAKER_00 24:25

Hashtag get rid of the bottle yeah I've been trying to do that for years you don't know you know what I mean? Yeah he barely uses it at all no it's more like a cover thing I'm just so happy he like he's like phased it out he doesn't need it he doesn't rely on it anymore. I mean it's it's huge. I mean he's done a lot of big things without being on medication like one thing he even did this weekend which was pretty cool so he when we we don't give him a lot of watermelon usually because he just goes crazy with it and he'll he won't stop eating it and then upset just goes right through him so we he had watermelon this weekend because we had guests and he asked for watermelon but I think Shannon gave him a hot dog and put it on a plate and then so um when he I wasn't paying attention I was just you know I was sober hanging out he then he then hands me the plate so I thought watermelon was on the plate and so when I went to go put watermelon on the plate he was yelling at me he goes and then I get I put some watermelon on the plate and then he got mad and then walked over he took the watermelon dumped it back into the watermelon container and then he went to his ACC device and he put he was he looked for it he put chicken nuggets and I go you want chicken nuggets okay and then again he goes to the fridge and then he finds the hot dogs and brings you back the hot dog and says and he gives you the plate and like put this on the plate.

SPEAKER_01 25:42

It's funny because I think he does have hot dogs on his ACC device but it was just I didn't I I didn't see it either. But it was like he just immediately like you did the wrong thing and he was correcting you back I think that's fantastic. I was so I was so happy that he did that like when that happened I was like I gotta share this everybody that he just did this because again like that would have been like a 40 minute meltdown and then him hurting himself and you trying to figure out what I did wrong because he wanted hot not knowing you did anything wrong. Yep.

SPEAKER_00 26:08

That was amazing like that that was a big thing this weekend and then he gets sick. So yeah the the medication alone um what about the failed ones we tried uh we tried Ritalin like a like for a couple days and then he was up till four in the morning I mean did you see anything positive about Adderall?

SPEAKER_01 26:27

One of the two I don't remember which one because we have we have we tried one and then we have the other one still in our cabinet that we've never even tried yeah the doctor because we don't feel like we he needs it.

SPEAKER_00 26:36

He doesn't need it no not anymore.

SPEAKER_01 26:38

Not like I wouldn't suggest it at all right now but that one was a disaster like he it was only it's supposed to last what like eight hours it lasts like 14 and I just remember like the night that I was like okay I was already kind of feeling like we're not gonna do this anymore. But I think this is what made us agree on it. He was like it was late um maybe like one in the morning and he was still pacing and in and too like energetic and hyped up and I think he was trying to calm himself down to the point where he he started crying and then he like banged his head on the floor like almost like he was so frustrated that he wouldn't couldn't calm down and I was like yeah that's it we're not we're not doing this anymore. Like I don't even want to like continue to give it to him to see if it gets better.

SPEAKER_00 27:23

Like that no we're just stopping cold turkey well he was on Ritalin and what's the other one we uh we tried the one that Luke of Oran. So Luke of Oran and we did that before the whole announcement that they did uh that RFK and Trump and all of them did um like it was like I think it was a few weeks before it so we were on it a few weeks and so we upped his dose on that too um because that's what you had to do you'd do like small trials of that and then it moves up so I don't know I don't know if it was all of it but I just know the riddle and I remember laying in bed with him and I kept just watching his face and I swear to god he like he sat up like he was the undertaker basically he just looked like I'm gonna go outside and it's like he was he like it was like he I could already see the manic look on his face so I knew that wasn't the right medication for him. And then Luca Orin um that was the only thing I think we've put him on where he starts babbling and starts making more mouth noises.

SPEAKER_01 28:13

So like the first dose we gave him it was like half a pill once a day or twice? Once yeah after that he started babbling like in like longer sentences and using different noises than he's ever made and we're like oh this is great like and that's what we wanted to think it's when we upped the dosage or gave it to him twice a day it was when it all like shattered went downhill. He was still doing the babbling but unfortunately he was doing it like three in the morning and then he would just and again I I'll take any form of communication that's never the problem but it was like he like you said when Shannon said it was the it was the hurting himself because his brain wouldn't calm down and then it's like and it was like I feel like he meltdowns went up even in ABA too they were like aggressions, SIBs meltdowns went up not like crazy but you know it was almost like none and now then it's happening.

SPEAKER_00 29:07

He was just too hyper focused like that was during Halloween because I remember that they the whole day his ABA was practiced I think it was maybe a day or two of him practicing trick or treating so they had like a door set up and they'd they'd make him knock on the door and then pick out a piece of candy and then he'd go to his bag and then go to the next door.

SPEAKER_01 29:23

Yeah so they had did that with a couple doors and the only thing that they they practice doors and then they would practice oh this door doesn't have a light on so you can't go trick or treat on that one. Problem with our neighborhood is they're all tables out front everyone does tables in front of their houses and so it wasn't what he had practiced.

SPEAKER_00 29:41

He got really he got about a block and a half and he got really frustrated because he thought we weren't doing it right or he wasn't doing it right.

SPEAKER_01 29:47

Yeah like we would try to bring up to the table and he lost his mind.

SPEAKER_00 29:51

Yeah and then he wanted to get out of his wagon and so he wanted to do it like show that he did it all day and then he and then he went to the I finally found a door that he can go to and then I let him knock on the door they opened the door and I and because he was being he was looking at the candy he wasn't sure which one he wanted he was kind of sensory seeking like in the thing. Yeah so I pick out a piece of candy and put in his back and then he just fucking lost it and I was like oh boy and I remember just picking him up and putting back in he like was full meltdown mode. And then could not like calm down yeah or change focus to like hey the candy is outside on a table not behind a door so I had to take him back to the truck and then um I sat in the truck with him and he was just kind of calmed down but he it's like he wanted to try again I feel like and it's like I it was getting late anyway and I I just didn't I I didn't want him to fail again so that was a bad I let Shannon take Nolan out and go do something and um Nolan's whole football team walks up to the walks up to the truck like hey is Nolan home Carson's in the back just screaming I'm like ah he's out there somewhere go find him and I didn't know what to do and I was just like oh god I just I just felt and then and then it it again it's one of those things where in the moment you don't think any would happen. It was the next day where I'm like I know what happened now and I know what what took place. Or even that night after he went to sleep because I I knew what happened. I think I said it but okay I get no credit around here it's unbelievable. Well I don't either in your stories I it's all me that's it's me it's me in my life you know okay the trials and tribulations of Phil over here you should just do this podcast solo then it's hard be it'd be kind of hard to talk to myself at least I wouldn't have a little judgment when I do it. Do you think you could do a podcast by no I because I can't talk to myself and like make it like we're I try to I try and you know get out of the story or something like that.

SPEAKER_01 31:35

Yeah.

SPEAKER_00 31:37

So anyway Shannon came up with the idea of it and then um and then I felt horribly bad. And I remember the the first ABA meeting was Tuesday I think Halloween was on Friday. Friday I think so I asked I asked I I first question I asked was how did you guys do the trick or treating and she told us how she did it and I said okay then that's what happened and I told her that and she goes yeah and she goes next next year next year we'll have to incorporate tables.

SPEAKER_01 32:00

Yeah it was rough like even back in California that was a big thing too like especially in courts it's like there's just one table at the end of the court and all the houses like put their candy on the table which I think is boring.

SPEAKER_00 32:10

It's that's the whole part of trick-or-treating you go to knock on someone's door and trick or treat like well people want to hang out and be out front it's just I know it's just I don't know they're not they're not the the our son on medication has nothing to do with their problem I mean it's like you know it it realistically it's like again I think today Carson would would have would have would have understood it at least just taking the candy because like what's the word like acclimated or yeah changed focus or whatever is that word I'm looking for yeah sure yeah but I think before because he again when the medication kicks in it's like his brain's telling you up slow it down and then he's trying to overreact because he's trying to get it out I I think a lot of this stuff comes from anxiety. I think that's where a lot of this like a lot of autism and a lot of the effects you see from the stress and the anger comes from anxiety of him not being able to explain it him not being able to communicate it which is the same thing or him just communicate and explain. Well you he can communicate without words explain can he explain without words no no how are you saying no like that it sounds like deep and I don't know it's bothering me. Anyway so I I think a lot of it's anxiety driven and I think again I I credit the Murt to that the giving rid of getting getting helping him a lot with the anxiety but it was still keeping him on the medication to see that he didn't need it after that that after that fact. Like I wish we would have seen that earlier but again you don't see it in your day-to-day life um and he's obviously out of the house 40 hours a week so it's hard to see it like where it's like if I worked at a job and I didn't see it I came home to it. Hard to kind of react to it you know would you ever try the Luke of Oran again?

SPEAKER_01 34:02

You know what I mean I'm reluctant to try anything right now because he's in such a good place that I don't want to ruin it.

SPEAKER_00 34:12

But what if he started speaking like all of a sudden hello mother I don't think his voice would be like that.

SPEAKER_01 34:17

How do you think his voice would be not deep like that no like he's very gosh another voice to talk back in the house exactly Carson would be so rude I feel like like when he'd just be so direct to the point that it comes off as being rude.

SPEAKER_00 34:39

I like it though. I repeat we talk about my sister and I talk about this all the time we think he has like an attitude and we think it's funny we're not saying you should have an attitude it's annoying it's annoying to not be able to like say what you want and then you have to use like your gestures and and your your hands to push people away from you and stuff. Yeah everyone's always in this personal space everyone just leave me leave me leave me alone leave me alone you know I I I think um I would like to give it a shot just to see how it goes like a very small dose yeah back to once a day just a very small low dose just see how it goes for a little bit that just I don't know you gotta jump sometimes you know you gotta just take it take a leap we did I and what I read about the Leukavorin was that is that I'm gonna say is that seven times in your head especially when you're going through like imagine a traffic jam in your head like for like an autistic kid or an autistic person for that matter what the Leukavorin does it's it's a it's a folic acid that opens up in your brain it's it's a it's a vitamin. So if you were to put that into someone who already had like a traffic jam you're adding several traffic jams inside the head because the acid's still being blocked in different areas now it's just being pushed around. Whereas if it was free it would do its job and go down the spinal cord like it's supposed to do.

SPEAKER_01 35:58

Right so isn't Leucovorin supposed to unclog that jam?

SPEAKER_00 36:03

Not when you already have several other things like medications that are blocking it.

SPEAKER_01 36:07

I don't know there's so many different things they say oh you're supposed to do that frat test and if it's I don't remember if it's frat F-R-A-T. F-A-T frat test I think it's like an oral and it but whether it's positive or negative I don't remember which one the Luke of one won't work for you or um then if they have that other gene that God what is it called the one that G9 it's like we've had a lot of Resident Evil lately so they're like a T virus. The one that they wanted us to test Carson for before he did MERT that like the mutation MTHFR we called it the motherfucker gene yeah the motherfucker gene gene they said if I think if he has that then it won't work or maybe I'm wrong vice versa.

SPEAKER_00 36:50

I don't know there's a lot of different things going around about the Luke of Ron and a lot of reasons why it wouldn't work for your only reason why I'm why I'm even interested in doing it again is because we saw instant results.

SPEAKER_01 37:02

Yeah the only the only backfire we saw for what was he on during that time was it just guanfazine he was on everything he was in Guanfazine when we started no but I think when we started it was just guanficine and the other one came later that was in November but we but we never took him off the Guanfazine without it right so to me it's like why don't we since he's not on it now see what happens and then what if he comes out like oh yeah. My mom said that too she goes oh do you think you could try it again now that he's not on anything and I told her the same thing. I said I'm a little reluctant because Carson's in such a good place right now that I don't want to ruin it.

SPEAKER_00 37:43

I'm just interested if he sounds like Barry White now. Oh he does not but he I mean I have more videos of him babbling during that time than I've ever had like before that I had I only had one video of him battling bab babbling when he was like three years old.

SPEAKER_01 37:56

Yeah.

SPEAKER_00 37:57

I mean I literally it was every day that I took him I picked him from ABA he'd want the music on and then he would literally in the back just ba he'd just do all these crazy sounds and words and I thought and you even said one time you thought he said like a full ass sentence one time.

SPEAKER_01 38:11

Yeah.

SPEAKER_00 38:13

See?

SPEAKER_01 38:13

Was that when he was on looking for it was something similar I think it was yeah so no I said I think I said that like the like two weeks ago that I think he said like a full sentence.

SPEAKER_00 38:25

It was pretty recent yeah I don't know I I just think that it would be so cool if we if it if that can help like I've always said communication's got to be fixed before anything else and you know if that's not fixed then we're kind of in the running in the dark here. So we should have an open debate. Yeah should we let people vote? We have like 200 people that that are following us now should we have them really isn't it crazy? Yeah I think they all listen uh no not because I the the stats don't say that they do but we I mean we've had I don't know 70 80 people listen so far it's not bad for just coming out the gate you know no promotion you know no organization please I'm I'm Mr. Organization on that thing no I meant like on the pod you don't need to have or it's I it's some structure's fine but I I feel like it just comes off lazy when you have structure.

SPEAKER_01 39:28

It's weird to say that structure conversation that's what it should be that's what this whole thing should be would it be it'd be so stupid if you're over there reading Carson's like diagnostic No I'm not saying that but like a like have like a general topic in mind and then go from there which is I feel like what we've basically done.

SPEAKER_00 39:46

Well sometimes you gotta throw in a curveball every once in a while yeah I didn't really plan to talk about medication tonight but that's where we left it. So I mean we we wanted to do a podcast about medication so there you go.

SPEAKER_01 39:59

Surprise anything other medication that he did that we didn't like trying to think I don't think so like we did those drops you still getting those vitamins B9 drops that that was for that that MTHFR gene I even see like this video that keeps popping up this guy keeps saying like this is the cure for autism it's the same drops is it the sham wow guy that does it no but it's it's kind of like that like a Billy Mays for methyl L methylfolate or whatever it's called that's the drops. And they say like I don't know if it's hard to tell if we noticed anything from the drops because we started it like what a week or two before he started Mert so now you still give those to him by the way no why I don't know you you they didn't really do anything.

SPEAKER_00 40:48

I think you told me to stop I don't know I you always asked him at the wrong time.

SPEAKER_01 40:53

I don't know we could start cycling those in again and the freaking I think vitamins would always a good idea. What's the other one? I can't think of the other drops that the neuro one no there's no way he's taking fish oil I got this fish oil from this other company that we ordered some vitamins from and it's supposed to be like orange sherbet flavored which it is but it just tastes like orange sherbet fish. Like the aftertaste is just too fishy there's no way he'll even drink it even if it was orange sherbet it's very thick.

SPEAKER_00 41:25

But um there was no the the vitamin drops what are they I like magnesium I like that's the ones we need to cycle those back into I like the doctor that he'd eat salmon it's like he's not eating salmon we don't eat salmon all like all these sophisticated foods I feel like yeah can you get salmon at McDonald's you can get a fish in it and then he wanted us to like put a couple drops of like olive oil on his food I did that and he threw up sick that's the one time he got sick he was pacing back and forth and he was like scared and crying because he had to throw up and he didn't want to like that's I cook with olive oil isn't that good enough apparently not you're supposed to put on his eggs and stuff so I did I put like two drops on his auntlet now he's never gonna trust you again if he could talk he would say mom don't put that in my eggs it does not sound like that you don't know what he sounds like I do I mean I know what he sounds like he's uh uh he doesn't sound that's a higher note deep it's not deep he's like hitting a higher note there it's not the same thing okay well if he starts talking he sounds like Barry White then I stand corrected then would you would you admit that I'm right about everything and you're wrong with everything I would if he sounds like Barry White yes I would okay you've heard it here to vote it on all right well hopefully tomorrow he's through his sickness but I think we're gonna run for a rough weekend but hey at least I'll be with you and we could get out of the house and do some fun I think we'll find out pretty quickly because this morning he woke up already not feeling well and whining and pacing so we'll find out in the morning first thing cannot wait. I'm super excited about that.

SPEAKER_01 42:54

Yeah well now it's the weekend so now you can help me and we can just go drive around and find something to do to try to take his mind off it's always me finding something hopefully knock on wood he feels better. Why don't you find where is he's already talking about that go ahead please I don't hold on I was talking I don't even know what you're trying to say he already feels better like he's already not running a fever his coffin runny nose is already better I mean it's not gone but it's better he um his stomach issues should be almost over anyways what what were you gonna say something smart?

SPEAKER_00 43:26

Sure I was gonna say why don't you think of like an itinerary tomorrow a Carson safe itinerary I can't even follow a schedule and you want me to come up with an itinerary?

SPEAKER_01 43:35

It'd be nice yeah I did it for my guests I did it for my parents when they came out at one time and my dad told me it was too much even though I was trying to make it so they weren't bored when they came out here the first time.

SPEAKER_00 43:48

How about a Mackie safe itinerary I think he's he's tired of being home.

SPEAKER_01 43:55

He is tired of being home I feel bad because we left him like almost every day this weekend last weekend

SPEAKER_00 44:00

Maybe he likes to be left alone asleep though.

SPEAKER_01 44:03

He doesn't. He's a family dog.

SPEAKER_00 44:06

Alright, well, maybe you do Saturday and I'll do Sunday. Yeah. Exactly. See?

SPEAKER_01 44:18

I don't know why. It's not there's no difference. Just gives me an extra day to prepare.

SPEAKER_00 44:22

An extra day to say, I don't know what we're doing. Yeah. That'll be that'll wake up. What are we doing today? What's happening?

SPEAKER_01 44:27

Right.

SPEAKER_00 44:28

That's that's that's the that's the voice.

SPEAKER_01 44:31

So then it's like you're gonna never mind. End up doing both Saturday and Sunday.

SPEAKER_00 44:35

Yeah, that's what it is. That's what I like about this, this whole thing. So all right, we'll see. But anyway, always a pleasure. Thank you. Thank you. Cheers, you can't do it.