Episode 1: Our Autism Journey Begins

In our very first episode of Spectrum Of Blues, co-hosts Kurtis and Samantha VanFleet share their story as a family navigating autism.

From the early signs to the diagnoses of our sons, Ezekiel and Greyson, this episode is an honest conversation about what life really looks like raising children on the spectrum. We touch on the challenges, the growth, the unexpected moments, and the perspective that has shaped who we are today laying the foundation, with future episodes diving deeper into each part of our journey.

This isn’t a polished or perfect story, it’s real, raw, and from the heart.

Whether you’re a parent on a similar journey, someone looking to understand autism better, or just here to listen, welcome to our corner of the world. It truly means everything that you’re here.

Transcript

SPEAKER_01 0:02

Parenting doesn't come with the 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_02 0:11

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

SPEAKER_01 0:26

And I'm Samantha Van Fleet.

SPEAKER_02 0:27

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 faced, the things we've learned, and the moments that have changed our lives.

SPEAKER_01 0:40

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_02 0:50

The reason we decided to start Spectrum of Blues podcast is because we just seen a lot of different families or people just not understand autism or are ashamed to talk about autism and just have different, you know, a different perspective, right? Not a lot of people know somebody that is on the spectrum, and being able to just share our journey and share what we've experienced with other people is something that, you know, it kind of intrigues us. Um and uh what interests you most about starting the podcast, Samantha.

SPEAKER_01 1:20

The reason I agree to wanting to do the podcast because in a time like this, there's not a lot of people openly talking about it and accepting of it. And it's become a really big reality for us of being put in situations where it's hard to even just be there because of how our kids are. And it's not a bad thing, it's just we've had to change the way we've lived from before to now completely to accommodate to our kids.

SPEAKER_02 2:02

Yeah, no, absolutely. I I definitely agree. And I think the the biggest thing is is that, you know, the ending you said is is you know, we've had to change, you know, to to accommodate the kids. And and I think that's the the biggest hurdle that we faced and uh just letting other people know and and and learn about you know autism, like you know, uh many times a lot of the kids with autism, you know, specifically our kids as well, is that they just have you know different sensory needs or different sensory outputs or you know, different things that they're going to enjoy. Um, and I think that's what's going to be fun to be able to talk about on this podcast, you know, as we go, you know, deeper into it. Um what was on your mind or what was like what was going through your mind when you first noticed is noticed the differences in you know Ezekiel when he was when he was a baby.

SPEAKER_01 2:46

I thought they were cute. He was stimming a lot as a child, or I guess as baby. And we always thought it was just adorable how he would like turn his eyes to the side or spin or flap or just hop and doing all these different things. Like we just thought it was just so adorable watching him do it, and so we really we really didn't think anything bad of it until we started seeing the regression. He regressed when he was about 16 months, and that is when it came to my mind that it was actually no, it wasn't 16 months, he was about 14 months.

SPEAKER_02 3:31

Yeah, I think it was a little younger than that.

SPEAKER_01 3:33

Because at his 16 month appointment, I brought the concerns to his pediatrician.

SPEAKER_02 3:37

Yeah, I remember you brought it up to me beforehand and you were like, hey, like I think XYZ, and I'm like, mm-hmm I don't know, but you know, I didn't know what I didn't know, right? Like, you know, as as a parent, you know, especially as your first kid, like you, you know, everything's perfect, nothing could go wrong, right? And and uh, you know, I think there was definitely some um uh denial, I think, phase of it, you know, and like, you know, the fact that, you know, like, oh, like something could be, you know, quote unquote wrong, right? Um, and I think that, you know, it's definitely was a was an eye-opener, right?

SPEAKER_01 4:11

Absolutely. And uh I think explaining it to you because I have nanny for kids before that were on the spectrum, or I mean are on the spectrum. So that kind of helped me understand it a little more and know what the signs were.

SPEAKER_02 4:31

Yeah, no, I think, you know, especially like for me, like I didn't, you know, growing up, I didn't really have contact or or come in, you know, contact with with anybody, at least that I knew that had autism, right? So, you know, when when you bring up the word autism, it's like what is that? You know, I don't know what that is, and you know, and it was very ignorant of me, right? It was very naive of me to not know, you know, what it was. And, you know, as soon as you know, we heard the words, it was, you know, um, you know, figuring out what it was, listening to TED Talks, listening to, you know, all these different things online or doing research and trying to figure out like, hey, like what is it, you know, and on the all on, you know, and on and all those different things, you know. So um, what was something that you noticed like specifically with Zeke, other than you know, what you mentioned? But like as we started getting closer to, you know, getting the diagnosis that you seen that was like, hey, like maybe something is different, like, you know, was it the communication, was it the behaviors or like what what what specifically for you stood out was like, hey, like maybe this isn't, you know, quote unquote normal.

SPEAKER_01 5:25

When he stopped talking. Yeah. He stopped eating. Yeah. He got really so picky. Yeah, he got really what's the word? He got really specific with textures. Yeah. He didn't like chicken or he didn't like vegetables anymore. And before he would tear them up, um, he went from eating tons and tons of foods to only eating chicken nuggets, mac and cheese, and crackers. It was very, very tortillas.

SPEAKER_02 5:55

He did like tortillas. He still likes tortillas. He could uh he could tear up some corn tortillas.

SPEAKER_01 6:01

And it just when he stopped doing all those things, it really turned a light bulb, light bulb on uh there's possibly something not okay.

SPEAKER_02 6:13

Yeah. Yeah, and I think too, like you you mentioned it earlier, but the the spinning, right? Where you know he would he would spin in one direction, but his eyes would move in the other, you know, would be looking at the other direction. And you know, at first it was like, okay, yeah, that's that's cute, but then he would do it repetitively and then got to a point where like he would do it so much and not get dizzy, right?

SPEAKER_01 6:32

Right, he wouldn't get dizzy.

SPEAKER_02 6:34

I'm like, that's weird, you know. And and later now that we know is like, you know, there's a lot of you know, children or or people or you know, with with autism that you know it's a sensory thing for them. So spinning like that, like doesn't it doesn't cause them to be dizzy like it would a you know neurotypical person. So yeah, it's definitely was a was a little bit of a of a of a shock, you know, just learning those different things.

SPEAKER_01 6:54

Oh absolutely, and even just like in comparison with Ezekiel and Grayson, Grayson, we didn't start suspecting it till he was, you know, almost two to three years old. He, you know, was advancing really, really well and progressing, I mean, really well on just his milestones. He didn't regress like Ezekiel, he wasn't picky. Um, to an extent, he's not much like not that picky now, but he does have like his texture issues or his texture preferences.

SPEAKER_02 7:33

Yeah, he definitely does, especially like in the in the and just like the the preferences in general with the food. Like he loves his you know, chicken nuggies from McDonald's, right?

SPEAKER_01 7:41

Oh yeah, he's obsessed with chicken.

SPEAKER_02 7:43

McDonald's if you want to sponsor us for chicken nuggets, you know, just slide in the DM, we'll we'll we'll uh we'll eat some chicken nuggets or something during a podcast.

SPEAKER_01 7:50

He eats chicken nuggets every day.

SPEAKER_02 7:52

Um when when you know the the emotions of parenting with autism, right? Like, you know, from before when we had the fear or the confusion or the learning curves to now, like how do you think it is like today emotionally? Um, and what's like the hardest part for you on on raising kids on the autism spectrum?

SPEAKER_01 8:12

It's hard, it's not easy at all. Um from the outside, it probably doesn't look so hard because people may see it as like they're just kids, but there's a lot that goes into it with having to help them regulate, having to help them, you know, understand their needs when they're non-verbal. You know, like we we are still learning every day, every moment more about what we can do to help them. And I feel like emotionally that takes a huge toll because as parents, you know, there's never that moment of like taking a break or just being able to sit down for a minute to Yeah, letting your guard down, like you can't exactly. We're always on the go, we're always you know paying attention to every little move. And it's not that we're helicopter parents, we're nowhere near helicopter parents, yeah, but it's more for their safety because they have no sense of fear.

SPEAKER_02 9:18

Yeah, they'll turn the stove on, they'll jump out of a window, they'll open a door. Like we have locks. I mean, for for people that don't know us, we have locks on every exterior door in the house.

SPEAKER_01 9:28

And it's more for their safety because Ezekiel does like to escape.

SPEAKER_02 9:32

Yeah, he likes climbing things. Like you we put a lock at the top of the door, he'll climb the doorknob and unlock it on top, like you know, just all these different things. And I think, you know, especially like for us, that you know, obviously autism is in the picture, but then you know, being non-verbal as well, you know, makes it very hard, you know, especially to communicate with with them, you know, and and we're trying an AAC device right now, but I think the biggest thing is like, you know, the communication piece, like we'll never know like what they're exactly thinking. Yeah, or what they're you know, when they're in pain, like what's what's hurting, right? And they can't verbally communicate that with us so many times. Like, we don't know. We have to, you know, trial and error a lot of different things. And I think that's just you know, mentally, it you know, it gets hard and and you know, it's it's challenging to to deal with, you know, especially the sensory-seeking side, right? Is is when they, you know, they want that adrenaline, they want that rush, they want that, you know, what they need, right? It's it's you know, their body, you know, craves it, you know. So if it's jumping off of furniture, if it's you know, running into the wall, or it, you know, all these different things where it's like, you know, right.

SPEAKER_01 10:33

Ezekiel rides a scooter right into the wall, right into the wall, and turns around and rides into the other wall.

SPEAKER_02 10:39

Right. Yeah, it's so funny. And and and I think like, you know, obviously, as mentioned, you know, downsides, you know, quote unquote downsides, there are like there's so much, you know, beautiful and rewarding things too, right?

SPEAKER_01 10:50

Right, absolutely. We get to see the world a different way.

SPEAKER_02 10:53

Yeah, and and and I think too, like we get to, you know, you know, we get to see them learn in different ways, you know, and and be able to, you know, learn something new or to acquire a new skill. And and every day it seems like they are doing something new, and especially with Ezekiel, like he's a very big, uh, sneaky guy, right? So if he wants something, you know, he's gonna find a way to get that thing in.

SPEAKER_01 11:14

And Grayson's heading that direction.

SPEAKER_02 11:17

Right in his footsteps, yeah, for sure.

SPEAKER_01 11:19

He he is very adamant about what he wants.

SPEAKER_02 11:25

And I feel like I feel like he could uh like sense stuff. Like when when we take something from him and we hide it, like he knows where we hit it.

SPEAKER_01 11:31

He has a radar in his head.

SPEAKER_02 11:32

Yeah, and it's like as soon as he gets closer in his head, it's probably like beep beep. As he gets closer, it gets loud, beep beep, beep, beep, beep, you know. Oh yeah, absolutely. It's crazy. Like the the they're the fact that they could just, you know, um, you know, just you know, they they have a good memory, they have a good, you know, they're they're smart kids, you know. The problem is is that they have the struggle um of communicating, right? And being able to express themselves. And I think that's what what makes it difficult. It and ultimately, you know, gave them that level three uh designation is is being nonverbal and not being able to, you know, explain or have a sense of fear.

SPEAKER_01 12:05

Well, and on top of that, they have no fear, right? Anything at all. Right.

SPEAKER_02 12:09

And that's the that's the fear, right? Uh for us as parents, like the fear of of like, you know, them not having a fear, you know, they'll they'll elope and and run into the middle of the street or you know, play with, you know, try to play with a fire or like all these different things. And it's like, you know, like if we're not watching them, they're going to do it, right? And and that's the scary part is we have to, you know, constantly like, you know, be on the lookout. We're trying to watch a TV show, you know, but in our in our head, like, you know, we're listening and seeing what they're doing, you know, or or hearing what they're doing.

SPEAKER_01 12:36

Um so I think in all in all with the kids, emotionally, mentally, they've taught us and they're still teaching us how to slow down in life. Because we're always we were always on the go go go. And ever since, you know, we ha we've had our boys and Liliana, we've had to learn how to just slow down and look at life differently.

SPEAKER_02 13:06

Yeah, and and I agree with you on on you know the slowing down part, you know, as much as we need to slow down, like because you know, the boys are speeding up, right? So as as they speed up, we slow down and and it's able to complement, you know, pretty well, especially you know, with the fact that you know the boys are go, go, go constantly all the time, you know, they'll stay up all night if if we allowed them to, right? And you know, always wanting to do stuff. Their mind obviously is is working a little bit differently than ours. Um, and they just they're at 130, 140% all day.

SPEAKER_01 13:37

From the moment they wake up to the moment they go to sleep.

SPEAKER_02 13:40

No, a hundred percent. Is there anything that you would say, like, you know, or you would want a parent to know or anybody to know, um, or understood more about autism or raising a kid with autism?

SPEAKER_01 13:55

You learn about yourself a different way.

SPEAKER_02 13:58

Yeah. You I mean the patient factor, right? Oh, absolutely. You learn you learn the level of patience that you never knew you had with somebody or had in general.

SPEAKER_01 14:08

Absolutely. And uh you you learn patience even for just other people in general, you know, having to like go out in public or dealing with people that are with your kids or you know, doctors or just anyone, um, especially if they're not understanding of their disability. It puts it into like a different perspective, I guess.

SPEAKER_02 14:36

Yeah, no, I agree. And and especially like, you know, that a lot of people, you know, like I said in the beginning, they don't know what autism is or you know, they they think or they act ignorant. Yeah, or like, you know, the fact that you know, because our kids are elopers and and they're a danger to themselves, like we have handicap placards, right? And and we park in a handicapped spot and we, you know, we take the you know our kid out and put him in his, you know, in his in his stroller, you know, to keep him from eloping. And people look at us and like, oh, why are you parked in the handicapped spot?

SPEAKER_01 15:02

You know, or they give us those looks and or they tell us they don't look disabled.

SPEAKER_02 15:05

Yeah, and it's like, okay, like you know, son, act disabled for the lady, you know, like you know what I mean, and perform for her, yeah, and you know, and and it's like you know, obviously there's so many different disabilities and what you could see, you know, physically on on somebody. And uh it definitely you know sheds the light that you know um there are people that that don't know anything about autism that need to learn it, right?

SPEAKER_01 15:28

And and obviously just because I wouldn't say they need to learn it, it's would be nice for them to learn it to have a better understanding of that.

SPEAKER_02 15:34

That's a that's a good point. Yeah, you're right. And and and I think, you know, you're right. Yeah, you you don't have to learn about it, right? But if you want um to be able to, you know, commingle in the society, right? Or, you know, quote unquote, um, then you should have, you know, or it would be good to have some understanding of it, right? And and you know, of course, you know, when we're at like places like Chuck E. Cheese or something too, and you know, uh, you know, the kids obviously are going to crave or desire a lot of sensory stuff, and you know, they don't understand sharing, right? So we have to, you know, teach the kids or you know, or or you know, go with them and and you know, kind of hand over hand, guide them, and and people don't understand that, and you know, so it's a lot of apologizing. Hey, like I'm sorry, my my my son touched, you know, your kid's basketball, you know, or like all these different things, right? And um, you know, or when we're at a grocery store and they're um, you know, have have you know sensory overload and they're screaming or they're crying.

SPEAKER_00 16:26

Over stimulated.

SPEAKER_02 16:27

Or they're overstimulated, yeah. And and and people like judges, oh, you need to handle your kid, you need to you know correct your kid. I could beat my kid all day, but he's not gonna understand what it's being, you know, what it's meant to be disciplined, right?

SPEAKER_01 16:37

Right, they don't understand that, so it's not gonna do anything for either one of us. Right. It would be more for another person's satisfaction, but how is that gonna benefit my kids?

SPEAKER_02 16:52

Right.

SPEAKER_01 16:53

And what what needs to just be done is just continuously guide them and guide them. It doesn't end after the first one because they don't understand. Right.

SPEAKER_02 17:07

Yeah, no, absolutely. And and I think that, you know, as we as we dig deeper into this podcast and you know into into future episodes, um, you know, we're gonna be able to, you know, explain both Ezekiel and Grayson's story and and you know the challenges that we've had with with you know with schools, with doctors, with you know, getting the diagnosis, like the wait times, um, you know, advocacy, you know, more, you know, dig deeper into you know family lives and and and IEPs and and it really everything that you know really encompasses you know autism as a whole or living, you know, with with you know life on the spectrum, right? Uh, through our kids' eyes, you know, through both Ezekiel and Grayson, where you know, obviously they're not able to to communicate verbally on on how they're feeling or you know the struggles that they deal with, but you know, we're living it with them and and you know, we we're able to be the voice for them. And hopefully one day, you know, they will start to talk and they'll be able to join us on the podcast, right?

SPEAKER_01 18:01

A hundred percent. And I'm a firm believer that there's always another day to improve and get better. Especially for them.

SPEAKER_02 18:11

Absolutely. No, I definitely agree.

SPEAKER_01 18:14

Curtis, what would be the hardest part of raising kids on the autism spectrum?

SPEAKER_02 18:19

I think the hardest thing, I mean, for me personally, is the I guess not lack of, but like you know, we could raise them as kids that you see traditionally, right? Through, you know, quote unquote neurotypical kids or normal kids, right? But uh for me it's like okay, we could raise them that way, but they're not gonna fully understand because we need to be able to um raise them the way that they need to be raised, right? So, like in terms of you know, being more patient or being more understanding or being more vocal, right? Like everything we do, like hey, like, you know, we'll we've act it out or voice it out, you know, as we're doing stuff. Um, so I think, you know, just being able to to be a good parent um and be patient. I think you know, there are times where you know we'll we'll tell them no and they continue to do it, right? They continue to test it or they continue to do this or they continue to do that. And it's like, you know, like like Lord, please help me like be patient, you know, to to keep, you know, to to not, you know, you know, crash out right now, you know, or or you know, when they make them like all these different things where, you know, as much it is it is, you know, difficult, um, you know, it's rewarding as well because you know, we're able to see them, you know, learn more things, like I said earlier, and and like do all these different things that you know they're able to learn or to to acquire a new skill. Um, you know, do I wish that you know I could come home from work and you know ask Zeke how his day was at school, you know, every day.

SPEAKER_00 19:57

Yeah, 100%.

SPEAKER_02 19:58

You know, I I wish that every day. And you know, unfortunately, or even with Grayson, you know, how how's was school with Grayson and and you know, or how was your day, or what did you do, what was fun at school? Like, you know, we don't get a you know, we could ask those questions, so I can't say we don't get asked those questions, but we don't get to know the answers to those questions.

SPEAKER_01 20:14

Yep, the only answer we get is from their teachers or parahelpers or paraeducators, right?

SPEAKER_02 20:20

And they say they did good today.

SPEAKER_01 20:22

Right, so we don't get like a full understanding from their viewpoint.

SPEAKER_02 20:29

Right.

SPEAKER_01 20:29

And that's the hardest part for me too.

SPEAKER_02 20:34

No, I I definitely agree. It it's it's hard and and you know, there's there's days where you know, like I always joke around, but like there's nothing at my you know, my job, my my full-time job that would ever be more difficult than what we deal with at home work-wise with with the kids.

SPEAKER_01 20:50

Absolutely. And working from home also, and you know, being with the kids at home, it's you know, I feel like it's three jobs because it's just that much.

SPEAKER_02 21:02

Yeah, one's one's a job for Ezekiel, one job for one job for working from home. No, absolutely. And and that's where, you know, like like even when we have family, you know, that that come over or or stay or or like see how the boys are, and we're like, all right, like we're gonna go to the store real quick. You got the boys? And they're like, Yeah, yeah, we got them, and then 20 minutes later, hey, we don't got them. Yeah, yeah.

SPEAKER_00 21:22

Yeah.

SPEAKER_02 21:22

Because they just they have a you know, it's it's it's it's not easy, yeah.

SPEAKER_01 21:27

It's not easy at all. But for the village we do have, I'm very grateful.

SPEAKER_02 21:33

Absolutely.

SPEAKER_01 21:34

For them, absolutely for everyone.

SPEAKER_02 21:36

Because your mom is like the most patient person I know, especially when it comes to the boys.

SPEAKER_00 21:41

Yeah, no, she really is. She's she's the saint for sure. She's heaven's sent.

SPEAKER_02 21:46

Yeah, your sisters and I mean your brother and your dad, and and my parents, you know, my mom and dad, and you know, my nephew, you know, like all the people that, you know, like like it they say it takes a village to raise an autistic kid, right? And You know, we have two, and but we only have one village, right? So uh, you know, um, you know, we're very grateful and and thankful for for everybody that's that's supported us um and continues to support us in in this journey that that we go through with the boys every day. And of course, you know, our daughter Liliana, who you know we're gonna speak about uh on future episodes, but you know, even though she's not even two yet, um, she's definitely very understanding. And um, I think she knows like the boys are quote unquote different.

SPEAKER_01 22:33

And she's very protective of her brothers. Yeah, she's the baby sister, but acts as the big sister. She constantly wants to make sure when she gets a snack, they get a snack, or when she gets her juice, they get their juice. Yeah, she's always thinking about her brothers.

SPEAKER_02 22:50

Yeah, I give her juice and she says, Zeke, Zeke, or Grayson, but but you know, and she's also like, you know, low-key a snitch, right? But in a good way, you know, like they'll be doing something wrong in the room, and she'll they're very quiet, and she'll come and she'll be like, Zeke, boom, yeah.

SPEAKER_01 23:07

So it's nice that like she's also paying attention and she knows that they're doing stuff that is not very smart or safe, and she'll come running to us and tell us right away.

SPEAKER_02 23:19

She definitely knows right from wrong for sure.

SPEAKER_01 23:21

Oh, absolutely, and I think she tries to do some of the things that Grayson does, yeah, but at the same time, she doesn't like full-blown send it because she knows it's wrong. Right, no, absolutely, but she's also she's just the most loving sister, she absolutely loves her brothers, wants to give them all her love. Her and Grayson are ultimate best friends, and I just am excited to see their relationship just blossom and thrive.

SPEAKER_02 23:58

Yeah, no, absolutely. I definitely agree. Um, but uh we thank you for listening to our first episode of Spectrum of Blues, our autism journey. Uh, we're excited that you're able to uh listen and learn more about autism and different things as we continue to go through these episodes. Uh and if you ever have any questions or um comments or concerns, feel free to DM us or comment um on any of our platforms. And uh we're so thankful that you're here. If you're a parent, educator, advocate, or someone who simply wants to learn more about autism, we're so glad you're here.

SPEAKER_01 24:36

And if our story helps even one family feel less alone, then this podcast will be worth it.

SPEAKER_02 24:43

Thanks for listening to Spectrum of Blues, our autism journey. We'll see you in the next episode. And remember, welcome to our corner of the world. It means everything that you're here.