Episode 2: The Day We Heard Autism

In this episode, we share the moment we first heard the diagnosis and how it changed everything for our family. We walk through the evaluation process, the conversations with doctors, and the emotions we felt in that moment. From uncertainty to understanding, we open up about what was going through our minds as parents. This is a real and honest look at the day that shaped our journey forward.

Transcript

SPEAKER_00 0:00

Parenting doesn't come with a manual, and parenting children on the autism spectrum definitely doesn't. When you first become a parent, you imagine what your child's life would look like.

SPEAKER_01 0:08

But sometimes life takes a different path than you expected. And that path changes everything. For our family, that path was autism. Welcome back to our corner of the world. It means everything that you're here. This is Spectrum of Blues, our autism journey. I'm Curtis.

SPEAKER_00 0:23

And I'm Samantha.

SPEAKER_01 0:24

We're parents to three amazing kids, Ezekiel, Grayson, and Liliana. Both of our boys are on the autism spectrum. This podcast is about our journey as a family, the challenges we've faced, the things we've learned, and the moments that have changed our lives.

SPEAKER_00 0:37

We wanted to create a space where parents, families, and anyone wanting to understand autism a little better could hear real stories from real life, ask questions, and everything in between.

SPEAKER_01 0:50

Welcome back to our corner of the world. It means everything that you're here. This episode, episode two, is going to talk about the day we heard autism. Samantha, when did we first notice the differences in Ezekiel?

SPEAKER_00 1:04

I noticed the first differences when he was 13 months. Like I said at the last episode, he stopped talking. He just regressed everything that he was doing and saying he stopped. And so that's when it it seemed like things were changing.

SPEAKER_01 1:25

Yeah, no, I definitely agree. I think the the biggest thing is like, you know, we talked about on the last episode with him, but like when he started doing you know certain things like lining up the toys and and uh I guess not even just toys, lining up anything. Right.

SPEAKER_00 1:38

Um when he used to watch any wheel. Yeah.

SPEAKER_01 1:42

Yeah, oh yeah, he would take a car. That's that's a funny point. But he would take the car and instead of like, you know, using it like a traditional kid, you know, or a traditional car, um he would take the wheels and just spin them. And then the ceiling fan too, remember that?

SPEAKER_00 1:56

Oh yeah, he used to stare at the ceiling fan. Spin them watched Coco. He spun his head a thousand times.

SPEAKER_01 2:02

Yeah.

SPEAKER_00 2:03

That's true. He did watch Coco a million times before he turned one.

SPEAKER_01 2:06

Yeah, I could recite that whole movie Coco on Disney.

SPEAKER_00 2:10

Yeah. I'm trying to think of what else. He he just changed. He wasn't the same little boy that we saw from zero, you know, from when he was born to when he turned a year old. Right. It'd feel like everything just changed suddenly and it progressed really quickly. And before we knew it, it was like something was actually wrong.

SPEAKER_01 2:39

So no, I definitely agree. And I think in Grayson, um, we actually weren't really sure.

SPEAKER_00 2:46

We suspected it a little bit. Um, there was times where we were like, uh, maybe he does have it, or maybe he doesn't, because he didn't regress, he didn't didn't like show signs. Um, he was a he was a little over two.

SPEAKER_01 3:04

Yeah, because we got Zeke's diagnosis or uh younger in age, yeah.

SPEAKER_00 3:08

He was about twenty twenty months?

SPEAKER_01 3:10

Yeah.

SPEAKER_00 3:11

Where they were like, Oh, maybe he's high functioning.

SPEAKER_01 3:14

Yeah.

SPEAKER_00 3:15

But it was it was definitely different from both of them. Grayson was, you know, doing everything that he's supposed to be doing, excelling in just everything. He wasn't showing any signs of anything at all. And suddenly he just kind of he didn't regress, he started having a lot of sensory issues suddenly, and we were just kind of like maybe maybe he needs help with you know something, and that's when we got him started in therapy before he turned three and uh he you know it was helping him and then we ended up moving and uh we had to get him to restart it in therapy, and then the signs started coming, he started showing more signs of it, and so we got him evaluated because we were like, you know what, if he needs the help, why not?

SPEAKER_01 4:12

Right, no, definitely, and and and that's why like you know it's called you know autism spectrum disorder, right? Because there's never any two kids that or adults that are the same, right? And not everybody's gonna have the exact same symptoms, not everybody's gonna have the exact same sensory problems, not everybody are gonna have the same, you know, needs, right? And especially like the differences between Ezekiel and Grayson, like Ezekiel was trying these different foods and then you know stopped wanting them because it was a texture thing.

SPEAKER_00 4:37

Absolutely. He used to live chicken on a stick or drumstick, yeah, asparagus, broccoli.

SPEAKER_01 4:41

And Grayson, like he never regressed from eating, he never stopped eating, he just kept eating. He keeps eating, right?

SPEAKER_00 4:46

And and now he just well he eats, he's more specific now, but one thing he doesn't like stop eating are his chicken nuggets. Yeah, like we've said before. Yeah, he loves his chicken, like rotisserie chicken, he you know, he loves pasta, lasagna, like just anything definitely white ring. Anything with a lot of carbs.

SPEAKER_01 5:08

Yeah, like he's a carb loaf of bread. Yeah, half a loaf of bread.

SPEAKER_00 5:13

If we let him, yeah, he's done it before when he snuck it away.

SPEAKER_01 5:16

The Hawaiian breads, he likes he is a carb, yeah, he is a carbon. He loves carbs, he's a big boy. Yeah. Samantha, what is something that you think like looking back that we might have missed? Like I or not necessarily missed, but that we could have been like, okay, like maybe we should have, you know, taken him to the doctor or bring it up to the doctor sooner.

SPEAKER_00 5:38

Honestly, I don't feel like we like as for Ezekiel, I don't feel that we missed or they didn't talk to the doctor soon enough because it doesn't always happen like at a certain time. We started noticing, you know, 13 months, 14 months when he was that age. He soon ha soon after had an appointment at 16 months, and that's when we brought it up. I think if we didn't bring it up at that time, it would have been, you know, not bad per se, but like I feel like it should have been, you know, brought up at that point.

SPEAKER_01 6:20

Were we in Arizona, or that was when we first came back?

SPEAKER_00 6:23

No, we were here. That's when we seen the doctor in Roseville.

SPEAKER_01 6:26

Yeah.

SPEAKER_00 6:26

And then he my childhood doctor. Yes.

SPEAKER_01 6:28

Yeah. We're not gonna say any names because you know we don't want to put that out there, but yeah, yeah, got it. Okay, yeah, no, definitely.

SPEAKER_00 6:35

Yeah, he was very open about it. He kind of saw the signs a little bit because when we started filling out the paperwork, because they give you, you know, three paperwork or three papers to fill out.

SPEAKER_01 6:43

Yeah, 20 pages each.

SPEAKER_00 6:45

Yeah, and milestones and everything. Does your son do this or daughter do this? Do they do this? Do they do that? And a lot of it was no. And so the doctor at that time, he was just kind of like, hmm, maybe we should get you referred over to a neurologist.

SPEAKER_01 7:01

Yeah, and and that whole process, I mean, that that's what we're gonna talk about next is is the evaluation process. But I think the biggest, you know, hurdle or or the difficulty, right, with that that whole process is like, so we we didn't have the best insurance when we moved back uh from Arizona uh back to California. And you know, we had this, I'm not even gonna say the name either, but it was a very it was a private insurance that was very bad. It was horrible. And so he was like, Yeah, like we could refer you to a neurologist, and we're like, okay, you know, I guess, you know, we didn't know how you get a diagnosis, right? And uh we got we got referred and they called and was like, hey, like, you know, uh, what's your insurance information, whatever? We gave it to him, and then I think like two days before the appointment, they called and said, Oh, like your insurance, your insurance doesn't cover this, like it's gonna be what, like, 400 out of pocket or something like that, just for an appointment. I'm like, okay, like like that's a lot of money for like for what? Like, what are we gonna get out of this? There was lots of questions, right? And absolutely we ended up going to the appointment, and it was 25 minute not even, I think it was 15 minutes with not even a doctor, it was a it was a nurse, it was a nurse or or PA or somebody it was, you know, whatever. And then they gave us a letter, and all the letters said, and this is what like like ticked me the most. It says, We suspect your child could have autism and would benefit from ABA therapy.

SPEAKER_00 8:27

Yeah, that's all it said.

SPEAKER_01 8:28

That made me so angry.

SPEAKER_00 8:29

And what's even worse, they didn't even have the doctor's signature on it.

SPEAKER_01 8:32

It didn't have nothing on it. It made me so it bothered me so much because the fact that like we spent this money, which we know we didn't have a lot of money. I wasn't working at the time, it was just Curtis working, and like, you know, we're gonna spend this money to like get our son evaluated, and the only thing we get is a letter saying, hey, he'll benefit from BBA therapy, which doesn't help us, right? Like it it was like okay, like it told us something we already knew, right? In terms of like obviously he would benefit from therapy, but we didn't know what to do next. And we didn't know really about the regional centers that are available in California for people listening outside of California regional centers is a um is a uh it's it's it's a it's its own entity, but it's uh uh funded by the government, uh both the state and the federal levels um to provide services and support for families with disabilities. Um obviously autism is one of those uh that's included. So um, you know, when we reached out to the regional center, we were able to get a lot of people.

SPEAKER_00 9:28

Well before that, remember they sorry, I didn't mean to cut you off, but remember they referred us over to a therapist for ABA, and um when we spoke to them on the phone to like get the evaluation prior to starting the ABA therapy, remember they told us it was gonna be $250 per appointment.

SPEAKER_01 9:48

Oh, that's right, yeah.

SPEAKER_00 9:49

It was and they were saying that he's possibly gonna need it three to four times a week.

SPEAKER_01 9:53

Yeah.

SPEAKER_00 9:54

How are we gonna come up with $250 per appointment? Right. Three to four times a week. Yeah. And so we just kind of were like back at square one of what to do. And that's when you started doing your research and you found the resource center.

SPEAKER_01 10:07

That's right, yep, that is right.

SPEAKER_00 10:08

Yeah, that's the reason why we went in that direction.

SPEAKER_01 10:11

And the fact is that like that, you know, obviously, I think now there's a lot more resources and a lot more publicized resources, right? And obviously, even though this was only three or four years ago, like it's it's progressed since then, you know, and and um the resources, especially in California, have have progressed. Um, and I think you know, the regional center is a is a is a benefit. Obviously, they're backlogged, right? And I think when we moved here to the county we're in now, um, and we transferred the case, like even to get the the second evaluation or whatever took like seven months or eight months, and then you know, they're like, Oh, you know, you have your uh we we diagnosed you with you know through the regional center with autism because they have an independent doctor come in, right?

SPEAKER_00 10:53

Even though he was already diagnosed, right?

SPEAKER_01 10:55

But then remember his his pediatrician, she was like, Oh, like like even though you have that through the regional center, you need a diagnosis through like a doctor. Yeah, and I'm like, but it was a doctor that evaluated him.

SPEAKER_00 11:05

So, like, so then Ezekiel has been evaluated at least five to six times, yeah.

SPEAKER_01 11:08

So like Stanford has has evaluated him, UC Davis, you know like all these different things, and it was like like I get it, but like is it all necessary? Like, is it all a money grab? Like, what like what could be happening that he has to be you know diagnosed through three or four or five different entities, and everyone has the same results, yeah. And everybody's gonna have the exact same result, right?

SPEAKER_00 11:28

Congratulations, he has autism, yeah.

SPEAKER_01 11:30

But it's like we knew that we knew, right? And it's like, okay, let's start services, right? And but like the regional center, like it is good for like um early childhood um therapy services, right? Like um the regional centers in California, like when you're under three years old, you know, all the services are free. Absolutely, they're provided free.

SPEAKER_00 11:47

So rather, like you feel like your kid is delayed in speech, they don't have to be diagnosed with anything if you feel that your child is just needing extra help, and they'll, you know, they'll evaluate for assistance, they won't evaluate for diagnosis. Yeah, and that's the one thing that a lot of parents should know because a lot of parents think like, oh, they're evaluating, they're gonna, you know, tell me that my kid is, you know, autistic or ADHD or whatever. But in reality, no, they're just doing it to get the child help and to get them, you know, to advance to where they need to be, whether it's with speech, OT, or ABA.

SPEAKER_01 12:26

Yeah, no, absolutely.

SPEAKER_00 12:26

And I there's another one too.

SPEAKER_01 12:28

Uh occupational therapy, speech therapy, and it's like physical. Yeah, f uh uh physical therapy or something. No, it's not physical therapy.

SPEAKER_00 12:38

But it's like something along with gross motor or whatever. Yeah, it works on the gross motor. Yeah, something like that.

SPEAKER_01 12:44

But like I have I've had a friend that like got their um their son scene and he think he was only two, but he just had some speech delays, right? And he didn't have any, you know, autism diagnosis or anything, and never did. He was just delayed in the speech, right? So which is actually quite normal. A great program, you know, a great thing that you know California offers for families with um kids that are you know delayed or on the autism spectrum or have a different type of disability.

SPEAKER_00 13:07

Yeah, absolutely.

SPEAKER_01 13:08

Um, but uh I think it's it's definitely you know goes back to to like what I was saying is like you know, when we got all these different diagnoses, you know, diagnoses or you know, whatever the word is, I don't really know what that word, but um, we were able to get more services, right? And then you know, I ended up switching jobs, so we had to go to a different, you know, we went from like a you know, Sutter per se to Kaiser, right? And and now they have to redo their process and they have to redo it. So now it's another wait list. But you know, for Grayson now currently is getting um you know ABA therapy, which is great. We got an evaluation for speech therapy, you know, as he's nonverbal. Um so we're waiting for that to go through, waiting for Zeke to go through with ABA, you know. So it's definitely like it's a it's a really long process. And and we get like everybody's backlogged, everybody's busy. There's more, you know, cases of autism now than there's ever been. And and I think that's a twofold, right? It's it's it goes into because you know, there's more uh education around autism, there's more education, uh, you know, which is amazing around, you know, the the type of delays and stuff. And and two, it's like, you know, there's more um there's more resources, right? There's more opportunity for people to get help and for kids to get help. And you know, the the earlier that they do get those services, you know, that they say quote unquote, they'll be a better member of the society as they get older, right? That's so they like on on paper, that's the goal of of services, right? Especially at an early age, is that they get, you know, they could become a you know a a productive member of society as they say it as they get older and not rely on, you know, things as as you know, have independence as they go. Yeah, you know, especially with our boys, you know, both Ezekiel and Grayson, like obviously we fear, you know, there's like what's gonna happen when we're gone, right?

SPEAKER_00 14:44

And it's like absolutely it's my biggest fear.

SPEAKER_01 14:46

It it's something that we think about all the time, right? It's like, you know, if if we're not here to take care of them, I'm gonna get teary-eyed, you know, like, yeah, who's gonna take care of them, right? And it's like it's a fear in in in a lot of uh, you know, parents that have kids with disabilities. Um, is like, you know, we love them, we care for them, we do everything. Like they're both in diapers still, we change their diapers, all that stuff. Like, yeah, if we're not here, is somebody else gonna do that?

SPEAKER_00 15:08

Right. And like, who knows if they're ever gonna get out of diapers? Right. It's just that's just the reality of life for us. So I'm just I'm you know, I'm grateful for the fact that, you know, the regional center told us about even just the diaper situation. They gave us a referral for our doctor, I think it was, and uh now we get diapers delivered and wipes delivered to us monthly for them because they're above, you know, four years old and they don't use the toilet. Yeah, absolutely. And it's it's a huge expense.

SPEAKER_01 15:44

Yeah, that's a huge expense, especially with you know, the fact that you know they are older, you know, than than than most, you know, than most kids that are, you know, usually typically in diapers, and you know, they have a bigger size and they you know, all this different stuff. And like to have that resource that's able to, you know, to get us, you know, the help, which it's nice, but the fact that like you know, there are parents that are going through this that are that are waiting, and it is taking a long time to get those services. And and I think that's something that like if you're listening and you are waiting for those services, like just you know, keep keep waiting, it's gonna happen.

SPEAKER_00 16:17

And call them. Yeah, call them tons and tons of times. Um for even just for like Stanford, we were on the wait list for almost a year and a half. Crazy. Yeah. And uh it just we we never expected to get the call, and we did. And there's even, you know, things that you could do, as for like there's certain places like UC Davis, they do what's it called?

SPEAKER_01 16:44

The Mind Institute?

SPEAKER_00 16:46

Yeah, the Mind Institute. They you can volunteer basically your child for testing and it's covered, and that's your way into these places.

SPEAKER_01 16:56

So UC Davis does a lot of um like clinical studies. Yes, that's what it is. You know, because obviously, you know, hospitals both like Stanford and UC Davis, they're really big on studies, and you know, they have doctors and and all these things, and students, you know, that are trying to find ways to help kids with autism not necessarily find a cure because you know, there's not gonna be a cure for autism. I don't feel like I mean, would it be great? Sure, but are we there? No. Um, but on ways to help kids manage their symptoms, right?

SPEAKER_00 17:24

Because they're trying to figure out whether it's like environmental, if it's you know, genetic or you know, whatever it is. And like there was one study, like none of these studies harm your child. There's one that we did, and you know, they did blood work, so that's just like the simple of it. But they were able to see if like we're connected with you know genetically, and turns out we weren't. But then there was another study that they were um gonna do where they come to your house and they take samples of like yeah, they vacuum your floor, take take samples of it to see like if that has something to do with it or whatever it is, and uh we never did that one because we were moving at the time to this current house where we're at now. But it was just there's different things that like they're always wanting to study, and it's nice, yeah.

SPEAKER_01 18:14

It's definitely a way in, you know, if you're on a wait list and it got us through, yeah. It did, and it helped us and and you know, was able to get us, you know, the resources that we needed to be able to do the next thing, you know, for the boys in terms of like therapies and stuff like that. But what is something uh Samantha that like that not necessarily frustrates you, but like obviously like we're we're told sometimes by friends or family or whatever that like oh like you know they'll grow out of it, right? They'll they'll they'll get better, you know. And like what is your like when you hear that, what is your thought process?

SPEAKER_00 18:48

It honestly breaks my heart. Yeah, it it really hurts because it's like it makes me feel like I'm not doing enough for them, and I know I am, yeah, but like it's not that they're like talking down on me as a parent. It feels like it. Yeah. Because it's hard, you know, like no one knows how like one is living in the life of it, like dealing with it until you're the parent of a child with a disability, and this can be any type of disability. And I like as for us, you know, autism and Grayson has also ADHD, it's it's difficult explaining it when they're just you know, their response is oh, you know, they're fine, they're kids, that's how kids act. To an extent, yes. It's how kids act, but at the same time, like it's very difficult for them, and that's the one thing that they don't understand.

SPEAKER_01 19:51

So yeah, no, I agree. I think it's especially something where like you know, I don't think they always mean malice but behind it. No, no, but it's one of those things where it's like, you know, are they ever going to be cured of autism? No. Are they gonna learn to manage their symptoms better? Yes. Are they gonna learn to, you know, manage being able to be in public better? Yes. Are they gonna be up, you know, they're they're learning at a rate that you know is slower than what we learn at, right? So we're able our mind is able to process noise and to process lights and to process you know stuff like that. And they're in in their mind, they're not able to process right.

SPEAKER_00 20:25

Like what one thing could be common sense to us can be not common sense to them. And that's where we come in and we try to see it in different ways for them to help explain it to them better and help them understand it better. And us as parents, like, you know, not only it's them learning, but it's also us learning a way to teach them different things. Right. And uh that's just yeah, that's just the biggest thing. Like we we learn to be different people for them.

SPEAKER_01 20:55

That's deep, you know, and that kind of you know brings me into the next question I was gonna ask is like what was you know, kind of like, you know, what was your first fear when when you found out about the boys or you know diagnosis? But you know, before we get into that, that question, you know, it's you know, we've had to change the way we live our lives. Absolutely, 100% to accommodate the kids or you know, the boys. Um and and people don't always understand that. And and it goes to like, you know, even like not being invited to parties or having you know families invite you or or friends, like you know, these people that you used to be close with, that you used to be friends with, you know, they find out you have a kid with autism and they like completely separate themselves, right? It's like it's not contagious, you're not gonna catch a cootie, you know what I mean? Like, you know, and and and you know, it it's devastating, especially when like you know, we used to be invited to stuff and and now we don't get invited. And oh, the reason is is because oh, we don't want you know your child to be the the spotlight when it's their child's birthday, and it's like okay, like because they have a sensory problem or they have a tantrum, not now it's a spotlight's on.

SPEAKER_00 22:00

even say it's a tantrum it's more like they're just overstimulating no I agree but that's what they're they're they're right they see it as a tantrum they see it as a tantrum they don't understand you know what you know what it is so it's like you know these different things where it's like you know we've learned that you know it's really you know just us right and and and you know yeah we have some family we have some close friends but um it's definitely opened our eyes to you know at the end of the day it's always gonna be us the kids and God you know absolutely a thousand percent and that was the hardest thing for me was like realizing my life was completely changing you know like at first when I first had Ezekiel or when we first had Ezekiel we felt like oh you know like it was the biggest blessing huge blessing and we're just so grateful for having him and you know having you know everyone loving on him and it was just amazing especially in like the time we were in COVID like the beginning of it it was just everyone was so you know what's the word to themselves because no one wanted to give anyone you know COVID and especially like babies because there's no no way to protect them. Right. So and that was our choice too like we really didn't want to surround Ezekiel around a lot of people at the time because you know no one knew anything about it. So but then like as like time went by and um as he got older it just kind of like it stopped. Everything stopped it was just kind of like we hung out with you know our close friends and sudden suddenly we didn't anymore. Yeah and it wasn't you know no you know no what is it I don't want to say anything bad because I don't have anything to say bad. I just feel that it just hurt.

SPEAKER_01 23:58

Yeah if that's how they want to be you know we're not gonna say like oh they can't feel the way they feel oh absolutely no and I would just rather remove myself right from the situation completely and you know continue on with my life.

SPEAKER_00 24:10

Right. Because that's just how life is you just have to continue on with life and move on and you know down the road we have met wonderful people that are very supportive of the boys and like we're always so cautious and protective of them and we'll they'll invite us over and we'll be like no like it's okay like the boys are just it's just gonna be too much and they're like no like it's fine like they push us to bring them around other like their kids and stuff and it turns out to be a really fun time and all it takes is that one person or that one family you know those friends that we have that have just been so welcoming and amazing to us and accepting you know because it's it's it's a hard life and I'm just I'm super grateful for those people that I hold I hold near and dear to my heart. And it was all thanks to Curtis because they were all his friends that I met and they were just amazing.

SPEAKER_01 25:11

I just paused yeah no I I think the you know it kind of goes back into to what I was saying earlier about you know the the fear right like you know is it always is it just the fear of the of the boys having autism or is it the fear of of what's going to change or what it's gonna look like right and like and I think we're at the point now where like what the boys have is what they have right and and we can't fix that and I don't want to fix it. No yeah we could help them we could support them we could you know is it hard do we cry a lot sure is it you know days where we're like just like man this is crazy sure is there days where Ezekiel likes to jump off of anything he could jump off or try to hop a fence or run out the door down the street yeah every day right so it's like you know different things where you know when it comes to fear it's like it's not only fear of of what five years is going to look like or ten years is going to look like but it's the fear of you know are they going to be safe? Are they going to do something that's dangerous or you know when they're at school are we going to trust the staff to make sure that he doesn't elope or he doesn't run away or he doesn't you know do all these different things and and that's just scary right like it's it's a thought that's always in our head and and at the end of the day it's like you know we have to learn to to you know trust in God and and to make sure that you know that's not gonna you know happen and and you know but at the end of the day like you know it is a fear right it is a worry that we have because you know they don't have that sense of fear they don't have that sense of of of danger they don't have that sense of hey like maybe I shouldn't do this that uh judgment skills right it's like they have very bad judgment that's for sure no literally if you tell them not to do something they're gonna do the complete opposite and if you tell them to do it they're still gonna do it they're still gonna do it.

SPEAKER_00 27:04

So it's like it's a it's you can explain to them and show them like it this is hot when I teach you Zeke or I'm trying to teach Zeke that when we're cooking because he loves to cook he loves to bake I always try to teach him like don't touch the pot or don't touch the pan.

SPEAKER_01 27:18

He says you mean touch it? Yeah and he puts his hand right over it and like attempts to touch it you know and or he'll try to take his own pot of noodles like he'll get he'll he'll put his hand over the steam and like or he'll grab a pot and turn the stove on and then touch the stove and like hey buddy you can't do that you know yeah it's there's a lot of things that are just scary. Yeah no absolutely when we first got the diagnosis like what is something that like like afterwards like obviously we suspected it right but I guess when we first started to suspect it more like I know I said before but like I did a lot of Googling right and trying to learn more about it. You were more familiar with it than I was but I think even today like there's always room to to learn more about it. Like there are a lot of parents that are like um embarrassed I guess or or like in denial in denial about their kids having autism and and they try not to like they don't want to learn more about it. They just want the basic you know like all the stuff and yeah and sets them up for failure. Yeah because for me it's like complete opposite like if I could learn everything that I need to learn to help support them so they could have a better life like obviously that's what I want to do and I think it's hard because you know not all families feel that way for their kids.

SPEAKER_00 28:34

Oh yeah and it's heartbreaking but you know for as for like our family we've as soon as we heard the word yeah you know we grieved I grieved what my life was going to be like or I thought my life was going to be like with my kids. Yeah and at well at the time with Ezekiel and uh once I you know I basically just cried it out it we flipped a switch and we got on we got to work and just started doing a ton of research calling a ton of people well Curtis was calling a ton of people because he likes doing that but I I was like bro guess what yeah I enjoyed autism I know oh yeah we knew that wait what do you mean you knew that you didn't tell me yeah I just I left it up to Curtis and he he did all the calling because he likes to talk to people he loves talking to people I'm a salesman I like to talk okay yeah but yeah other than that like I just I I feel that once you know once we got to that point of okay you know this is happening or you know his his life is different our life is changing what's next and we just went on to the next thing in life and just continued and we've just continued.

SPEAKER_01 29:49

Yeah and I had a I had a friend that you know yesterday at work or coworker I guess say you know there's not nothing you know because she has a a son that's on the spectrum an older son I think he's in high school and she said there's nothing wrong with him he's just different right and I think that that hit me it's huge um because you know there is nothing wrong with our boys you know they are just different they are wired different they're the most loving boys anyone has ever met yeah like they especially grayson Grayson is very very loving for a stranger and be like oh yeah and he'll he'll love on people he has such a big heart but his biggest struggle is he can't talk yeah he can't he can't express his needs and uh he just got his AAC device you know about a month ago and with the therapy and having the AAC device it's definitely been been such an improvement because once our angry little boy that didn't know what to do and we didn't know what to do because we don't know what we don't know once we started this therapy and you know with the AAC it has gotten so much better he is blossoming into just this loving sweet boy that just loves everyone and just wants to have fun play with his toys play with his sister play with us like he he's just doing so great and I just I'm I'm very excited to see how how it's just gonna keep going like the future for him especially and how and and when he how or how he progresses right especially like you know because you know before if we were giving him cereal in a cup he doesn't drink milk with cereal he just eats the cereal by itself but we'd have to fill it all the way up but now he's okay with it halfway right so like we're we're you know trying to communicate with him different things of like hey like you know eat this and come back for more yeah you know but I think I'm hoping as he learns to communicate more whether that is verbally or on the device that he's able to you know not go through his anger fits because there's some days we we call him like the the little Tasmanian devil because you know there's days where when he's mad no he's he's just he'll take he's on a whole different level throw it on the floor he'll take glass and throw it he'll take you know try to go in the kitchen grab cups and throw like all these different things where like you know you know laptops right there it's going on the floor like you know and and I think it and it it all involves going back to the communication right because he can't express his needs or tell us his needs or tell us his wants or like or we talked about in last episode but like if he's in pain or if he's hurting like so we don't know if he's hurting who knows these entire times that he was you know having his moments of overstimulation that like he had a headache or you know his stomach was hurting or it just could have been as simple as his throat his body you know and we just don't know.

SPEAKER_00 32:46

We don't know and he he doesn't come up to you and be like ow you know touching his head or touching his stomach and saying ow he doesn't say anything. So unless they have a fever or you know they're throwing up right visibly we can see and notice we don't know because they just can't tell us and I think a lot of it stems from not being able to verbally tell us or show us.

SPEAKER_01 33:11

Yeah and I think it for us too like you know obviously as much as he's frustrated right we're we are frustrated because I'm frustrated for him like as a parent it's like you want to do everything you can for your kids but we don't know what to do right and and it sounds like it's it's cheesy to say that we don't know what to do but not in because we don't know how to physically do it but because we don't know what's wrong right we don't know you know we can't just guess guess yeah yeah try all these different things you know but um I think it's definitely you know one of those things where you know as we got the diagnosis and we learned everything and like we're starting the therapies that you know there is hope at the end of the tunnel right and there are days like I said that we're you know that we're we're burnt out and we're we're you know we're burnt out most of the time raising parents on the or raising parents yeah my parents went on there we are raising my parents they're just not on the autism spectrum they didn't move in with us a couple months ago but no raising kids on the autism spectrum as parents um it's tough it's tough and and it's a 24-7 job right like yeah there's days where you know Grayson doesn't go to sleep until two in the morning or three in the morning but then or he just doesn't sleep at night yeah or wakes up at five in the morning or or Ezekiel stays up all night and like you know their brains are always going and it's hard to turn them off. So you know you know obviously you you know you're with the baby a call her baby but she's almost two but she's always gonna be our baby um we'll start crying um but there are days where like you know you're with her so I I come out with them or I wake up in the morning with them and I'm like hey buddy like it's three in the morning we gotta go to bed and he looks at me and he says he's bright and butchy killed like ready to take on the world when it's dark. I was just like all right yeah we're not doing this we're gonna go see so I'll try to cuddle with him on the couch or something and go to sleep.

SPEAKER_00 35:01

And a lot of the times like Curtis can just be laying on the couch asleep and Grayson will just be on his lap.

SPEAKER_01 35:06

Yeah on him or like right between my legs just sitting there just staring at nothing. And I'm like I I'm pretty sure he could see stuff like I don't I don't know for a fact but I don't want to go into that one.

SPEAKER_00 35:16

Yeah but I'm pretty sure he talks to people no he just he just doesn't he can't shut his brain down and it's sad because like his brain doesn't get to rest he his body doesn't get to rest and then it becomes you know very difficult for him to go on his day the next day with school. Usually days like that will just keep him home from school because we know how he can get and we don't want to put that you know burden on other people even though it's their job but at the same time like I'm cautious.

SPEAKER_01 35:52

No it's the biggest thing is like you know like like I mentioned uh or I I don't know if I mentioned it but I'm going to mention it is that like you know when we like you know we went to a new church last week and you know they were very welcoming and they had an autism classroom and in two different autism classrooms a sensory one and a regular one and yeah they were super amazing but it's like you know we hate putting the burden that we have on with our kids onto other people right and it it may sound you know kind of cheesy but it's like you know it's our problem to deal with and we hate just like passing them off to somebody else and and everybody that was working at the church was so like nice and and and very understanding and welcoming and and they're like no it's okay like you know we'll take them you know come back in two hours after the service is over or whatever and we came back and the boys loved it and they said they did great and we're like this is crazy right like we've never been able to leave the kids and but they had so much different you know toys and different you know swings and sensory stuff and and the the dark room the dark room and and the lights and like the toilets everything that they have that that they know that a kid on the on the autism spectrum would excel in and like for that to have that resource or that option was was amazing. But what do you think Sam has like you know or something that parents that you know may suspect their kid has autism or is going through early or early steps of of getting their child diagnosed or you know even already at the diagnosis stage like what would you say uh or tell them they should not be afraid of I think the first thing is just never stop advocating.

SPEAKER_00 37:28

If you feel something is wrong don't let anyone tell you otherwise without facts because people are just going to tell you all these different things. If it's not from a doctor their therapist or anyone in that profession I would take it with a grain of salt because it will get your mind rolling in just in ways that you they shouldn't you know and the one thing that I want people to you know understand and know is you're not alone in this. It's you may feel alone because we felt alone but we weren't alone and the support that's there is it's just amazing and I just want to you know let you guys know that our DMs are always open if you know if anyone needs to talk if anyone just wants to just vent let us know you know our you can message us on Instagram Facebook anywhere our numbers our phone numbers you can text us call us our emails like we are we are an open book if you just want to hear or if you want us to hear and just listen we got you we're here absolutely and we want to thank you guys for joining us on this second episode of Spectrum of Blues Our Autism journey.

SPEAKER_01 38:51

It means everything to us that you're here and we're excited to uh see you guys in episode three way way over