39 HOURS Awake - This Is Our Normal

[00:00:00]People always want to know why we don't take turns. Like, why doesn't one person sleep or, you know, why why can't we sleep when Aby's awake? That's a big question we get.

[00:00:12]That was a really quiet one. Um, she's starting to get a little tired now, but before it was cackling and yelling and all that. It's 12:30, so hopefully her night isn't too too long. And her door's open. She won't leave it closed when she's awake. And you can hear it throughout the whole house. Like it's, you know, I saw this Tik Tok about a mom talking about how her non-verbal son is the loudest person she's ever met in her life.

[00:00:49]>> And it's so very true.

[00:00:50]>> Did we ever sleep? No.

[00:00:52]>> No, I didn't think so. What time did you get up?

[00:00:58]What time did you get out of bed?

[00:00:59]>> I'm like, uh, which time?

[00:01:01]>> Oh, 8:30.

[00:01:07]I love her. I love her. I love her.

[00:01:10][yawns and sighs] Priscilla got about 4 [snorts] hours of sleep and then got up with a and uh, she let me sleep till 10:30. So, I got like 5 hours. I went to bed at 5.

[00:01:26]Abby never went to bed. She still hasn't gone to bed. She did take a nap for about 15 minutes and that was it. So, we're tired. Hopefully, tonight is an early night, you know.

[00:01:39]>> How are you so lively and perky and just just full of life right now? No, you cannot have this box. No, it is my box.

[00:01:48]This is my box. Stop yelling at me. No.

[00:01:51]No. We're not going to do a box cuz cuz it lets dust out and it's not good for you.

[00:01:57]>> It's not [snorts] good for anybody.

[00:01:58]>> Not good for anybody.

[00:02:00]>> You don't want to breathe in box dust.

[00:02:02]No paper bags. That's why we get the paper bag. Yeah. Go get it back.

[00:02:11]I think your friend missed you.

[00:02:16]Looks like I'm so glad you're awake.

[00:02:19]Huh?

[00:02:20]>> Right.

[00:02:20]>> See, we slept until um well after lunch, so she got her sleep in.

[00:02:25]>> Yeah.

[00:02:26]>> Huh. You look a little rough.

[00:02:29]Yeah. Like good rough. Like sleepy rough, not like bad rough. Don't take offense.

[00:02:36]A Zuko missed you.

[00:02:39]Soon as she came down, he's like, "Oh, my friend." You just can't lick her face, though. Okay. She's happy to see you, but you can't lick her face. Okay.

[00:02:48]Yeah.

[00:02:48]>> Say, "I've been waiting patiently, Mom."

[00:02:50]Oh, we're licking the lips. We're licking the lips. Okay. Hey, relax.

[00:02:58]>> Good girl.

[00:03:00]This one. This one.

[00:03:03]>> Hey. Hey. Gentle.

[00:03:07]>> It was so gentle.

[00:03:08]>> He's still learning.

[00:03:11]Is the best with with taking taking snacks.

[00:03:15]She's very um very gentle, >> sir. Ladies first.

[00:03:23]>> Good girl.

[00:03:26]>> Gentle. Gentle. [laughter] >> How does she do it?

[00:03:33]>> No. This is for my Sandy. Good girl.

[00:03:37]This is for my Rizzo.

[00:03:39]Good girl. You see how gentle they are?

[00:03:43]Okay, we're going to be gentle.

[00:03:47]That was better.

[00:03:50]Okay, one more time.

[00:03:53]Okay. Okay, this is so dramatic.

[00:03:57]>> Okay, last opportunity.

[00:04:00]Gentle. Okay, [laughter] we went backwards.

[00:04:04]>> He just gets so excited. Yeah, he does.

[00:04:06]I started with with I would like cup it in my hand so he couldn't get to it, you know, and then I'd slowly like turn it so he's a mess.

[00:04:15]>> I got a haircut.

[00:04:18]I looked terrible. I I was rough.

[00:04:21]>> I went in there and she's like >> She's like a two and then like a little off the top. Like she's like, "Is this how you normally style it?" I'm like, "What? [laughter] What? What do you mean style it?

[00:04:31]>> This is I woke up like this."

[00:04:33]>> Yeah. [laughter] 100%.

[00:04:36]What do you think?

[00:04:39]Your your hair is already doing crazy things.

[00:04:41]>> See, mom doesn't do the tightness. It's the tightness.

[00:04:46]>> Mom does better hairds uh than dad does.

[00:04:49]Huh.

[00:04:50]But mom's like, they look better, but mom's hairds don't stay.

[00:04:59]>> Dad will have you looking all The other day I gave her a mullet. I don't know how that happened, [clears throat] but [snorts] but it stayed. [cough] >> The seasoning is in my >> Do you want Do you want to You can have a couple crackers.

[00:05:17]>> Hey, listen. Oh, girl. Listen. Summer's going to be here in a little bit. Okay.

[00:05:22]>> Are you going to hang out with Summer?

[00:05:24]>> I think they could put less stuff in this jar.

[00:05:28]>> Uh-huh.

[00:05:29]>> To to make their pickles. Don't you think like that? I've already dumped some out.

[00:05:34]>> That's pickles. That's pickle stuff, right?

[00:05:37]>> Horse radish.

[00:05:38]>> Oh, you ready?

[00:05:41]>> I missed you.

[00:05:42]>> See, I'm ready, friend. Well, I get I'll get the little one for.

[00:05:45]>> Okay.

[00:05:46]>> I had it charging. So, we have to hide the iPads cuz you know things don't stay plugged in. So, I hide it in my office and charge it.

[00:05:59]>> Thompson.

[00:05:59]>> Bye. Yes.

[00:06:02]>> Chick-fil-A.

[00:06:03]>> We'll get dinner. But do you want to go to Target and go shopping?

[00:06:07]>> Yeah.

[00:06:07]>> Yeah. Does she need anything?

[00:06:09]>> She needs shampoo. Okay. And deodorant.

[00:06:12]>> Shampoo and deodorant.

[00:06:13]>> Okay.

[00:06:14]>> Bye. Love you. Have fun.

[00:06:17]>> We need to chat.

[00:06:18]>> What?

[00:06:19]>> You are you shimmering right now?

[00:06:21]>> No.

[00:06:22]>> Oh, okay.

[00:06:24]>> Move your arm.

[00:06:27]Can you see it?

[00:06:28]>> Oh, it's on my car.

[00:06:31]Can you guys see it? I don't know if they can see it or not.

[00:06:34]>> It's not that much. You >> got paint on it.

[00:06:37]>> There is paint on the door over there. I don't know how I got it inside the door like that. That's crazy.

[00:06:43]Isn't >> that weird?

[00:06:44]>> Yeah.

[00:06:46]>> Priscilla has a um >> body shimmer oil. It's like it moisturizes and nourishes the skin and it's got like vitamin E in it or something. And uh it also has a shimmer to it and it's very very subtle. Very like you would see it like like a bride.

[00:07:08]>> Yeah.

[00:07:08]>> Right.

[00:07:10]Um I gave it I gave it the the phrase not stripper glitter, but when you see it on the armrest of your car, >> maybe that was >> kind of gives off a stripper glitter vibe. I'm not going to not going to lie, cuz as we all know, glitter is the herpes of the craft world.

[00:07:32]>> There's so much happening in our yard right now.

[00:07:34]>> I know. I know.

[00:07:36]They they this this just Okay, I got to put my seatelt on, but I got to show show you guys this. So, this is my whole I'm I'm a very libertarian person. I'm a small government kind of person. I'm a you know I am not a you will own nothing and be happy kind of person and I got listen I got no problem with it people need services where they need services but it it definitely point like it didn't bother me is is my whole point the power aid bottle bothers me >> right >> pick up your trash but the gas company coming out and uh just digging huge holes in your yard >> that's just one part of it >> that's one there's a whole another there's a huge Another huge hole. It's just Isn't that wild though? It's a wild concept. Like you buy a piece of property, you buy a house, it does not belong to you.

[00:08:28]>> Halfway into your yard.

[00:08:30]>> It's still on the easement.

[00:08:32]>> So crazy.

[00:08:32]>> There's easement laws, but it's just it's just a crazy concept. You know, people have been like forcefully removed from their homes cuz they're going to put like a rail line through there. I know that's back in the day, but still, it's just a crazy concept. Like you you own nothing. I could start a whole another channel on this topic.

[00:09:00]>> Hey, good looking. Need a ride?

[00:09:01]>> I do.

[00:09:03]>> Did you find what you needed?

[00:09:04]>> I did. I mean, it wasn't exact, so I got a couple different options, but we'll see. See what works. Everything at Lane Bryant's like 60% off. Their stores always the last two times I've been there look like they're going out of business.

[00:09:22]>> It's funny that you own a boutique and you shop at other stores.

[00:09:27]>> Well, I don't have everything.

[00:09:30]>> I know. I know.

[00:09:32]>> I wish I could have everything.

[00:09:34]>> This is like day four or something of this vlog. I have no idea. We're doing a puzzle over here. Doing good. Yeah, you are doing good. So the sleep thing, we take medication for sleep. Um that is it's been that way for years and years and years. Um a lot of it is like anxiety meds um some mood stuff that kind of thing but they also have a sleep element to them as in they make you tired. So all those meds are taken um I think it's five med four meds in total.

[00:10:08]Four meds to all of those make you drowsy. So those are used for, you know, at bedtime for her to go to sleep. So the med thing is done. We've we've tried and and this is one of those I saw this real recently, guys. It was so funny.

[00:10:21]The guy's just laughing in different scenes, like different places where he's just doing everyday life and then laughing. Guess that's the context of it. But the question was, um, when people asked about your autistic child, have you tried this? you know, and and that's it's it's kind of rude, but it's also hilarious because it's so very accurate because we've tried everything.

[00:10:42]Everything anything you're gonna type in the comments, it's been tried with the exception of some really weird stuff that people recommend sometimes. Uh but any of your like sleep sounds, noise machines, melatonin, uh natural sleep remedies, you know, all of those things.

[00:10:58]It's not a matter of like it's not as much insomnia as it is a brain situation where she can't physically turn her brain off. Like when you you go 40 hours without even feeling tired like normally how you would feel like that's that's crazy. That's insane how the brain can work. So your brain won't shut off, huh?

[00:11:26]It just goes and goes and goes. Oh, you got a mess going on over here. What do we got? We got triangles on circles.

[00:11:33]Look, hold on. So these look See, these are squares, right?

[00:11:39]This is your rectangle with two holes.

[00:11:43]>> Yeah.

[00:11:51]>> Now we're now we're doing stuff, >> but her her brain won't shut off. And it just it's uh the biggest frustration that we feel, the greatest amount of sadness that we feel is for her, not for us. it. I mean, like, imagine imagine what that feels like, you know? Imagine sitting in your room for hours and hours and hours and you can't sleep. Like, it's the worst.

[00:12:17]It's got to be It's got to be the worst.

[00:12:19]It's so very sad and I hate it for her every single time. Like, we'll we'll be okay. Like, we'll find time to sleep or whatever. We'll be fine. But that's rough for her. Summertime is more challenging because like there's no shot we're getting a nap or anything, you know? Like it's just not going to happen. But like mom and dad Abby can take naps during the summer. But hey, what's up?

[00:12:44]What are you asking for, miss thing?

[00:12:50]What are we What are we looking for?

[00:12:57]Are you bag ready? Mom made some quesadillas for lunch. Now it's uh we got to clean up. She's in a meeting right now.

[00:13:04]Priscilla's presenting at Palooa, so she had to put together her whole her whole speech and and whatnot and she has to they do like slides and it's a it's a full presentation like it's fancy. So she has to work with corporate to like put it all together and you know she writes it, she does all the things then she presents all the information. They they have a team that like creates the slides and stuff so it's all professional looking which I'm very happy about because I do a lot of Canva and that's not I did not want to take on that job of creating slides.

[00:13:39]I didn't need that on my list.

[00:13:43]>> In just a little bit we'll work on that.

[00:13:45]>> Okay. Thank you.

[00:13:48]>> Come here. I'm just looking back on my >> Hey, listen.

[00:13:55]>> Mom's in a meeting. Okay, look. Let's go, girl.

[00:14:04]>> Let's get Let's grab another table task.

[00:14:07]>> All right. You remember this one?

[00:14:10]So, we're going to take the It's kind of like assembly line vocational stuff here, but we're going to take the black caps and put them on no other end. Yep. Put them on the black pen and then they go in the basket.

[00:14:30]The black ones are good because they have a little like tip cover on them, but the blue ones don't. So she she'll get little blue ink marks on her fingers sometimes.

[00:14:45]This is really easy obviously, but it does make it slightly more challenging when you have two different colors. But um this is more just busy work at Abigail's level. Huh. Then we have blue ones, too.

[00:15:02]So we can put all the caps here, all the pens here.

[00:15:07]And then you've got your sorting here. These are great vocational activities, too. What's up?

[00:15:16]Well, let's finish our pens first.

[00:15:22]If if you don't want ink, you could get these kind of pens and you can actually just take out the um ink cartridge with it and then put that cap back on and it'll work just fine.

[00:15:39]You mixed them. Look, that doesn't go on there. This is black. Blue is blue.

[00:15:53]Nice.

[00:16:00]Another cool thing you can do is you can mix up, right?

[00:16:05]So, we got blue caps here, black caps here, blue pens here, black pens here.

[00:16:10]So, she has to cross her body to get to Oh, we got distracted by the shape, but it uses both sides of the brain.

[00:16:22]There you go.

[00:16:30]That's black hat.

[00:16:34]This is black. You need blue. You need blue.

[00:16:59]Nice job.

[00:17:00]Do you want to do those again?

[00:17:02]>> No.

[00:17:03]>> Later.

[00:17:05]>> Okay. Crossing your midline like doing something on the right hand side of your body with your left hand or right or left hand side of the body with your right hand um forces uh your right side brain to talk to your left side brain.

[00:17:19]And it's a developmental thing. It's something that we learned in like OT. So something we try to implement. you know, you'll notice us and we don't even think about it all the time, but we just do it naturally. We'll place things on opposite sides from each other and it uh it promotes that. It helps to build brain development. So, you have a child that only does things on the left side of left hand and right side right hand, it's not because they're ambidextrous.

[00:17:47]It is because that's just how the brain works in its natural state and it's a uh they require more development in that area. There's that smile. There's that smile.

[00:18:00]>> Huh?

[00:18:01]>> Go for a ride. Where do you want to go for a ride? Where? Tell me.

[00:18:08]>> Yeah. Not Taylor. Tell me where.

[00:18:12]>> Car ride.

[00:18:13]>> Where too?

[00:18:14]>> You want to go office?

[00:18:17]>> Huh?

[00:18:18]>> I need to go pack up some orders and you want to ride to the post office.

[00:18:23]She's like, I don't care. I'll go for a ride.

[00:18:26]OH MY GOSH. SHE'S PUTTING her on her bed down just ready to go.

[00:18:29]>> So excited.

[00:18:31]>> I have to pack the orders up.

[00:18:33]>> She's like, I'm going to the bathroom.

[00:18:34]I'm getting ready. Get ready now.

[00:18:38][crying] >> There is no later. Only now.

[00:18:45]>> Only now.

[00:18:48]First package order. Second, go for a ride. Okay.

[00:18:53]>> You guys going to the post office? We are.

[00:18:55]>> Okay.

[00:18:57]>> Throw some shoes.

[00:18:58]>> Are you going to help mom carry stuff in? Maybe.

[00:19:02]Maybe.

[00:19:04]>> Hey, are you going to help me carry this bag in?

[00:19:06]>> Oh, >> well, listen though. Like, if you help her, maybe she'll help you go to dailies.

[00:19:14]What do you think of that?

[00:19:16]That could be a good deal.

[00:19:19]>> Come on.

[00:19:19]>> Is that a good deal?

[00:19:25]Hey, can I charge your iPad while you're gone? Let me hold it. I think it's dead.

[00:19:30]Yeah, it's dead. Why don't you take your other one? Oh, girl. Girl, what are we doing?

[00:19:36]This is, you know, this every single time the hype and excitement about going, but then it's like, wait, we're doing a thing. Let me process all of that data and planning and what I'm feeling about going and doing and what could possibly happen and all those things, you know, all those things.

[00:19:58]>> Good helper. And you brought your gift card. So, we're going to go to dies.

[00:20:03]You keep helping.

[00:20:07]Thanks so much, AB. Can you get the gate?

[00:20:13]Can you get it? Okay. Get this. Get the strap. Pick up the strap.

[00:20:22]Yeah. Okay. We'll put get the strap.

[00:20:26]Okay.

[00:20:29]Hold on. Let me get the gate.

[00:20:33]We can't slam it. Dad. Dad just No, no, no.

[00:20:37]Here.

[00:20:39]Grab the bag.

[00:20:45]We're going to put it in the trunk.

[00:20:48]Okay. Go back there.

[00:20:51]Keep going.

[00:20:55]Okay.

[00:20:57]Here. You got it.

[00:21:00]Awesome.

[00:21:02]Okay. Get in the Yep.

[00:21:06]Perfect.

[00:21:11]Hold on. Hold on. Okay. You know, I'm super proud of you cuz it wasn't too long ago that you couldn't do your seat belt. I feel like you could. You just didn't want to. Girl, it is way too hot to have that blanket on though.

[00:21:27]Take your blanket off. It's 102 out.

[00:21:33]You ready?

[00:21:35]You ready? Yeah. Thumbs up.

[00:21:39]Can you Okay, we're off.

[00:21:45]We got to get our bag. Oh, shut the door.

[00:21:51]Okay, let's get our bag. Can you carry this?

[00:21:58]Can you carry that? Here. You want Hold on. I got to shut the door. Here. You carry Get the straps. No, both of them.

[00:22:07]No, no, no, no. Abby, hold on. Let me help you.

[00:22:12]Come here. Come here. Hold on. Look here. There you go. Look at you, big helper.

[00:22:28]So, if you've been around here for a long time, you may remember we used to practice going to the post office. Um, when Abby was much younger, when we had Brandy and her old therapist Nikki, we would practice going to the post office and having to wait in line. And this is just huge. I'm so proud of you. every day. So, if you notice, her receptive communication is on point. I'll get the door for you. Okay, ma'am.

[00:23:04]Want us to drop these off? Maybe we could drop them off at that gentleman.

[00:23:08]Let's see. Let's go see. Hold on. Come here.

[00:23:15]Come on. Hurry.

[00:23:21]Can we drop these packages off with you?

[00:23:24]They're already labeled.

[00:23:27]>> Perfect. Hold on. He's going to take them from you.

[00:23:33]Hold on. She threw her gift card in here. Okay. Hold that. Thank you.

[00:23:37]>> No problem.

[00:23:38]>> Hold on. You got to wait for your bag.

[00:23:40]Watch out.

[00:23:42]Come here. Thank you. Have a great day.

[00:23:46]Okay. Here you go. Here's your bag.

[00:23:53]That was so easy up now. Dailies, right? Are we going to dailies?

[00:24:03]You guys thought I forgot that she threw that gift card in there, didn't you?

[00:24:06][laughter] I had to tell myself like five times, don't forget the gift card. Do you want me to hold your gift card? Hold on. Hold on. Do you want me to hold that until we get to dailies? Do you want me to hold that for you? Okay, go ahead. No, get back there.

[00:24:23]What are you smiling for?

[00:24:26]Are you excited?

[00:24:30]You're throwing your shoes out, girlfriend.

[00:24:35]You know how many pairs of shoes we've lost because of that? A lot.

[00:24:42]Got it. Gosh, it's time. Here's your card. Hold your card. Okay. Shut the door. Okay. She's a woman on a mission.

[00:24:54]Okay. You want Did you want a drink, too? Okay. Well, let's go pick one.

[00:25:00]We used to be orange juice. Now we don't get orange juice. You want me to hold it for you? Okay. Are you trying to look up for your Sprite? Right here.

[00:25:12]Look right there. Is that what you want?

[00:25:20]Okay. Here you take that. Okay. All of this together.

[00:25:26]>> Yeah.

[00:25:27]>> Over here.

[00:25:38]>> 10:46.

[00:25:39]Okay.

[00:25:41]Do we just swipe it? Come here.

[00:25:46]Can you say thank you?

[00:25:48]>> Thank you. Hey, take your bag.

[00:25:52]Have a good day. You too.

[00:26:05]Do you want me to put your um card back in your wallet?

[00:26:09]App. Do you want me to put that back in your wallet here? Let's put it up here. We'll eat it when we get home. Okay. Put it right there.

[00:26:20]You put it up there. Okay. Let me have your card.

[00:26:26]Nice job, Abigail. Lorraine. Excited for your treat? Oh my goodness.

[00:26:36]Are you so excited?

[00:26:40]Be careful. Be careful. Ah.

[00:26:43]Hold on. It's gonna explode. It's gonna explode. It's excited like you are.

[00:26:48][laughter] You're like a a sprite. A fuzzy sprite.

[00:26:53]Oh my gosh.

[00:26:58]Okay.

[00:27:06]Okay.

[00:27:08]Got it.

[00:27:10]>> I was just recording a sponsored reel.

[00:27:13]Um, and I had to tell you guys about this. This is not sponsored. Like, they didn't ask me to talk about this on YouTube at all, but I'm going to show you any anyway because this could be a huge benefit to a lot of you caregivers out there. Okay. So, Aeroflow Urology, is it windy? Let me to turn this fan off.

[00:27:32]You're probably fine. Okay. A It's hot.

[00:27:34]Sorry. Aeroflow Urology sent me this box of goodies. Okay. And this is and I talk about like the stigma and stuff and that's one of their big things is lowering the stigma of incontinence and being able to talk about things and at the same time protecting privacy and you know decency of of humans, right? But we need to talk about this stuff because the resources just don't seem to be available but they really are. So think and I got everything in an extra large.

[00:28:00]I asked them this in an extra large because we're going to donate all this to camp because we don't need it. But um but they often run out at camp of things because caregivers pay for this stuff out of pocket a lot and you can get it for $0 for free like through Medicaid through your insurance. These products are available for free and Aeroflow Urology they do all the leg work. So they they deal with um with your healthcare coordinators they submit all the paperwork for insurance all that stuff they do. So, they do the heavy lifting and you can have all these type of things. So, like the um you can't call them pull-ups cuz that's that's owned by a brand, but uh the adult briefs, the absorbent briefs, um the absorbent pads, like Desetin gloves. What else is in here? The bed pads. Those are those are awesome to have. They use those at camp quite a bit.

[00:28:58]whole bunch of different styles of debriefs, but um adult washcloths, like disposable washcloths, all that stuff you can get um through insurance at zero cost. So, I will put a link for them in the description for you guys to check out um if that's of benefit to you. And just, you know, the statistics were staggering. You know, 77 they did a survey and 77% of respondents said that the uh financial burden of being a caregiver is overwhelming and so many people need products like this and don't have access to it. So, they're paying out of pocket for a lot of the a lot of these things that they don't have to. Come on, guys.

[00:29:38]But, yeah, great resource. Like I said, they didn't pay me to talk about it on YouTube, but they're getting that for free because it's just such such a needed thing. So, great. And I love working with companies that that uh provide those resources directly for our families, especially when you got that zero dollar attached to it, you know.

[00:29:57]Go check them out. I'll do a I know sometimes it's hard to find the link, so I'll do a pinned comment as well. Dad cooked dinner tonight.

[00:30:07]Actually, dad didn't even do this. Mom ordered this.

[00:30:12]Oh, girl, I know who those are for.

[00:30:14]>> Those are me. Oh, >> those are Cajun season.

[00:30:18]>> Oh, you got regular fries for her? You want some French fries? We're doing a lot of prep for uh for this event that we got coming up.

[00:30:28]It's not just something that Priscilla shows up to because she has such a big team showing up. She has almost 30 women coming to Palooa. So, we we're busy. We're just busy. Too much going on. So, no. No, no. Hey, that's not that. There's no need for that.

[00:30:44]Look, let's pick them up. Put them back in. You don't need the paper. I know this what bothers you, but put them all back in there.

[00:30:52]We don't like paper in our trays for some reason. Would you like a plate to put it on?

[00:30:59]>> Yeah.

[00:31:00]>> Put your fries on here. You want them in that? Do you want them in there? Do you want your fries on the plate?

[00:31:08]Well, you do what you want to do. How about that? Here's your chicken.

[00:31:19]Okay, we're going to eat dinner. I have a special request. We need to do We need to have a pool day before we leave.

[00:31:24]>> Okay, we can do it.

[00:31:25]>> We can squeeze that in, right? Tomorrow >> or Saturday?

[00:31:27]>> Or Saturday.

[00:31:28]>> I told Isaiah I want him to hang out poolside with me Saturday.

[00:31:31]>> Okay, Saturday it is. Perfect. We'll do that Saturday. We will see you guys in the next one. Bye.