Episode 3: Autism & IEP's - Fighting To Be Heard

Navigating the school system as an autism parent can be overwhelming, emotional, and at times exhausting. In this episode, Kurtis and Samantha share their family's journey through the IEP process, discuss what an IEP is, why it matters for autistic children, and the challenges they've faced advocating for their sons, Ezekiel and Greyson.

From difficult meetings to learning how to speak up when something doesn't feel right, this episode is an honest conversation about the realities many autism families face. We also share lessons we've learned along the way and encouragement for parents who may be fighting similar battles.

Whether you're new to the IEP process or have been navigating it for years, we hope this episode reminds you that you're not alone.

Transcript

SPEAKER_01 0:01

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 0:09

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.

SPEAKER_01 0:22

And I'm Samantha.

SPEAKER_02 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 faced, the things we've learned, and the moments that have changed our lives.

SPEAKER_01 0:36

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

SPEAKER_02 0:46

Welcome back to Our Corner of the World. It means everything that you hear. This episode, episode three, is autism and IEPs, fighting to be heard. Samantha, what is an IEP?

SPEAKER_01 0:57

An IEP is an individualized education program. It's a legal plan created for children with disabilities designed to give kids support they need in school, and it's different services based on the child's needs. An IEP isn't supposed to be a favor schools give you. It's supposed to be a roadmap for helping your child succeed.

SPEAKER_02 1:14

No, I absolutely agree. And I think, you know, as we as we dig deeper into the future episodes of the podcast, uh, we're actually going to have an advocate be joining us uh in the summer of this year uh to be able to go into more details. You know, she deals with IEPs and she has her own company and stuff like that. But we just wanted to give you guys a gist and an understanding of what an IEP is and uh kind of dig into the basics of it. Um the type of supports that could be included in an IEP is, you know, of course it's specifically made for you know kids with disabilities, uh, whether it's autism or you know any other any other disability. But uh the different type of services that are included, you know, it's speech therapy, occupational therapy, behavioral support, uh, sensory accommodations, one-on-one uh communication devices like AACs that you know our children use, and then transportation. Uh most uh kids with disabilities who have an IEP, uh the transportation is is actually required. It's it's the law for the school to uh to provide transportation uh to get to and from school. And why IEPs you know specifically matter for kids with autism is because autism is in a one size fits all, right? There's never going to be, you know, any two kids that are on the spectrum that are the same.

SPEAKER_01 2:24

No, a hundred percent. And you know, some kids some kids are verbal and some are nonverbal, like our boys. His class, one of our boys' class, um, he is the only nonverbal student in his class, and there's eighteen of them. Right. And so it's a huge difference.

SPEAKER_02 2:40

Yeah, absolutely. It's a huge difference, and and everybody's gonna have different needs, right? And I think the the biggest thing, especially with with IEPs and and you know, with our boys specifically, is you know the the type of accommodations that are needed, right? Um of course, you know, with our boys, especially, you know, with Ezekiel, you know, let's say in in his class and his school, is there's going to be um, you know, he's gonna need more support, he's gonna need more guidance, he's gonna need more structure, he's gonna need these things that's gonna help him, you know, excel. And I and I think that's something that we've struggled with uh this year specifically, um, just for structure in his class, right?

SPEAKER_01 3:15

A hundred percent. That's the hardest thing that you know we we've dealt with the entire school year is the teachers following his IEP and uh Well the problem is he didn't have a teacher. That's yeah, that's true. That's very true.

SPEAKER_02 3:29

So basically what happened is is at the beginning of the school year, I don't know the exact the exact time, but you know, let's say teacher A was there for a couple months, you know, they ended up going on leave and it was a substitute teacher every two or three weeks until the end of school, which just finished today.

SPEAKER_01 3:44

She was supposed to come back in February, but once we asked the administrative uh team about it, they told us that, oh no, she's definitely not coming back. So it just continued to be substitute after sub substitute after substitute. And it just was very difficult for, you know, our son and I'm sure for the entire class. It just it's not how a student in general should, you know, go through their school.

SPEAKER_02 4:10

Yeah, no, it they need they need structure to learn. They need a teacher that's gonna be, you know, that knows the classroom, that knows the students, that have the relationship, you know, all those different things. And you know, especially with with kids with autism, is is a lot of kids are, you know, extremely intelligent, right? They just they learn differently. They need, you know, different, you know, different uh, you know, not necessarily accessories, but different um different tools, you know, needed to to succeed.

SPEAKER_01 4:35

Absolutely. And like the biggest thing for an IP is you you have to make sure that the school follows the IP because um legally they do.

SPEAKER_02 4:42

Right. No, absolutely. And and what's crazy is what I what I think a lot is, you know, especially having you know two boys with autism and and advocating for so many other kids with with autism is you know, an autistic kid struggling in school doesn't mean that they aren't smart. It means that the environment wasn't built for them, right? And and I think that we see that, especially in the school district, with you know, having a tap class and having a FA class, and you know, there's really nothing in between uh to support, you know, nonverbal autistic kids in the district. And and it's really, you know, it's really heartbreaking.

SPEAKER_01 5:18

A million percent. Like it's it's very difficult not only for the student, but us as parents, watching them, you know, quote unquote fail at what they're supposed to succeed in because there isn't a program that's right for them.

SPEAKER_02 5:30

Right. And and that's what's difficult is is because, you know, with an IEP, you know, the schools are supposed to provide, you know, the equal access to education, the accommodations, you know, the goals, all the things that, you know, they say that, you know, a child with autism or a child with a disability should be in a classroom that's least restrictive, right? And you know, so you know, there's are there's so many things that that are involved that you know doesn't necessarily happen. Um, but you know, what's written on paper and what actually happens in real life can be very different. And of course we've experienced that with our uh with our boys, you know, being in two different schools and being in two different programs. Um, you know, Grayson being in the skill program at at you know in in transitional kindergarten and Ezekiel being in, you know, the tap class in in kindergarten. And you want to ex, you know, say the names of those of those different schools.

SPEAKER_01 6:22

The skill class that Grayson is in, um, it's actually called Structured Class for Intensive Learning and TAP program that Ezekiel was in is called Transitional Academic Program.

SPEAKER_02 6:33

Which both are are considered, you know, day classes, which are um you know uh classes designed for kids with with disabilities. And I think we you know for Ezekiel specifically, especially with the struggles that we've had, you know, this school year uh with his classroom, and you know, we've had five IEPs, I think, this year, you know, so many different things and um normally you're supposed to have one IEP a year. Yeah, to review everything. Yeah, yeah. And and I think the the hardest part about it all was the fact that you know there were times where we felt unheard.

SPEAKER_01 7:06

Yeah, uh the communication was terrible, terrible, terrible, terrible. And uh us as you know parents, and we're very vocal. We are we will speak up, we will talk to anyone, everyone to get through because their education matters. And uh yet with every effort that we put in, their communication was still very bad.

SPEAKER_02 7:29

No, absolutely, and and and I think the biggest thing too was just the the lack of of care. Care, the lack of you know, understanding, the lack of um, you know, just them trying to say, you know, it's all Zeke's fault, it's all not our fault. They they they took no accountability for you know the fact that they didn't have a teacher that was there, they didn't have, you know, like all these different things and and for us as parents, like it's like like you want the best for your kid, and you want the best for you know them to be able to learn in an environment that is safe for them, and we didn't really feel that or get that.

SPEAKER_01 8:07

Ezekiel didn't get that at all. Like there was times where when he when his teacher wasn't there anymore and they would tell us in these IEP meetings that Ezekiel can't say his numbers, you know, one through ten, he can't say his colors, he can't, you know, point out letters, he can't write his ABCs or like lay them out in like their puzzle pieces. He can't do any of that. But at home and with video, we've proven to our advocate and proven to the school that he indeed knows how to do these things, and yet they still say like would just push him to the side and not put in the effort and they're like, Well, he doesn't show us. The reason he didn't show them was because he wasn't safe, he didn't feel safe, he didn't feel confident, they didn't give him that confidence to want to do these things, and they would say that they, you know, they would try for a minute and he wouldn't do it. They would only give him that one minute, knowing that he needs the extra structure, he needs the extra like support to get him to do these things. Yeah, it's not just one and done and you know, give up or one and done, and yeah, he did it. No, it it's it's a team effort. You're supposed to help him get to that point because he knows these things and they just didn't put that effort in.

SPEAKER_02 9:28

No, absolutely. And one of the hardest parts as a parent is watching people assume that your child understands less just because they communicate differently.

SPEAKER_01 9:35

Yeah, and like with that, there's like these testings, like state testings that they have, and it's it's all supposed to be verbally done. And uh Ezekiel got zeros on every single one of those tests because he can't verbally say, you know, certain things that was on that test, but he's nonverbal, right? But he knows these things, like he can do it, he can say it, like he can say it with his AEC, but they told us his, you know, he can't use his AEC device as the support for that test. Like he would have to vocally, verbally say it, and it's impossible. So, like in the in the eyes of the district, in the eyes of you know, statistics, he knows absolutely nothing. When indeed that's a thousand percent incorrect.

SPEAKER_02 10:23

Right. There has to be different ways to be able to gauge the test and to be able to get the information out of out of kids, you know, other than just you know, verbally being able to do it, right? Because it's like, you know, if you're looking at, you know, inclusion or uh, you know, just you know being able to, you know, have the opportunity to do something, rather you're verbal, whether you're in a wheelchair, whether you, you know, you have all these different disabilities, there should be a way to accommodate you.

SPEAKER_01 10:49

100%. And I just I feel like in that stance, it and it just goes for not just you know autistic kiddos, it can go for anyone that you know can't talk. It can be a different disability, it can be any other disability that they can't speak and they're just seen as like a failure. They're seen that they can't do these things because they can't verbally say it. But if they know sign language, that doesn't count, or you know, because Ezekiel knows some sign language as well, and they still won't take that as a you know, as an answer. Right. He has to vocally and verbally say it, which is the most frustrating thing ever.

SPEAKER_02 11:28

Right. No, 100%. And and I think it goes into, you know, like I said, we're gonna, you know, talk deeper about this once we, you know, have the advocate in a future episode. But there's so much that you know you have to advocate for for your own kid. You know, we always say that you know, we have to be the voice for our boys until they find their own.

SPEAKER_01 11:46

Yep. And we will continue to be.

SPEAKER_02 11:48

And we will continue to fight for them. And um, you know, there's a lot of things that that I want to say, but I think I'm gonna wait until you know that that next episode, uh, or not the next episode, but you know, when we have that advocate on uh the next episode about IEPs. Um, but I mean for Grayson, I think at his school in transitional kindergarten, I think you know, his teacher, you know, is somebody that I wish we could, you know, duplicate and multiply and take with us everywhere.

SPEAKER_00 12:11

Yeah, his teacher every year.

SPEAKER_02 12:13

Just so patient, so understanding, uh, very structured classroom, you know, and and obviously Ezekiel last year, you know, thrived in that classroom in that environment. Um, and and was doing so much.

SPEAKER_01 12:24

He was actually the top student in his class that year. And it just shows, you know, just how much, you know, he knows. He would be the one leading the class, doing the ABCs, even though he can't verbally say it, he'll make the sounds and he'll point to them and be the teacher for the day. And he went into that class not knowing a thing and came out of the class drawing, writing, you know, writing actual words down, whether it was Disney, Illumination, whether it was Toy Story, like he would write these words down and be very proud, knowing that he knows. So it's just it's it's definitely a huge difference.

SPEAKER_02 13:08

So absolutely, and it goes to how how important structure is, right? Like, you know, his classroom is really structured, and you know, kids with with autism strive on on or thrive rather on on structure, you know, and you know, hey, we're gonna do this at this time, we're gonna do that at this time, you know, all those things, and it allows them to be, you know, more uh capable of doing those things, right? And I think that's something that we don't see uh or we didn't see this school year. Um, and you know, of course next year is gonna be something different, and you know, we're looking forward to that. But um I I think you know, there's a lot of emotions that go into uh you know into IEPs and in terms of you know parents and and everything and and you know feeling judged, you know, having anxiety before walking in, um, you know, having to prove you know your child needs help or you know, a lot of the times, you know, there's multiple different people in these meetings. As the parents, you know, you do have a say in what happens and and what doesn't happen. Um, but a lot of times they try to they try to bully you. They try to bully you or or force you into agreeing with them, right? It's like, oh, five against one or two, right? You know, do what we say. And it's like, no, like we're gonna do what's best for the kid, you know, for our kids.

SPEAKER_01 14:19

That's why a lot of these times that like friends, you know, former students, former classmates of, you know, Ezekiel that have, you know, spoken with us and we've they've told us their struggles as well, dealing with these IEPs that they were bullied into putting their kids into um a class. Classrooms that they didn't like. Yeah, it's FA, it's it's a functional academics program where the the entire purpose of that is just to learn how to live. It's not even to live. It's just life skills, that's it.

SPEAKER_02 14:48

Yeah, and so and it's a non-degree earning track, right? Like you can't high school diploma. Yeah, you can't earn a high school diploma in that in that classroom. And you know, once you're in that classroom, it's it's it's really, really hard to get out. And um that that's the last thing we want for our boys only because like you know, they're young, they they need structure, they have the knowledge, they just need the structure and the the environment to get it out of them.

SPEAKER_01 15:14

Absolutely.

SPEAKER_02 15:15

And and I think that you know, for us as parents, like you know, why at five and six years old we're going to make the decision that they can't graduate high school at this time. You know what I mean?

SPEAKER_01 15:24

And I I don't want to put my child in that in that pathway of just like, no, you have to stay in this, you know, this class and you know, this program, and you're not gonna, you know, you're not gonna get better. You're not gonna learn, you know, academics. You're just gonna learn how to survive.

SPEAKER_02 15:43

Right. And and what's crazy is is schools sometimes do what's easiest instead of what's best for the kid.

SPEAKER_01 15:50

Yes. And that's what we've had to fight all year with Ezekiel, is it was to their benefit and it was never to Ezekiel's benefit.

SPEAKER_02 15:59

Right. And and that's the the sad part, I think, of of our whole, you know, our journey with with autism is you know, as parents that we've we've we have understood, we've came to the understanding, we've came to the acceptance, you know, all these different things of hey, like we have kids with autism, we have kids that you know are non-verbal, you know. We we've we've uh we you know we've not necessarily agreed, but we've accepted a lot of things, right? But the thing that we're not going to accept is, you know, our child being in an environment that's not good for them, that's not best for them, that's not going to, you know, allow them to to grow and to learn and to communicate and to socialize and to do all these things.

SPEAKER_01 16:41

And like the biggest thing for us, for uh Ezekiel is an example, um, he has shown his teachers or the substitutes and the paraeducators that he can do the work, but the only times that he will is when he has one-on-one support. And every single one of these meetings, these IEP meetings that we had, we were fighting and fighting to get him a one-to-one paraeducator. And they they they denied us every single time and would tell us no, it's not in the budget, no, we can't do it, no, we can't do that. And it just kind of proves to us that he indeed just needs, you know, that aid and extra support. And he can succeed. He just he's not given the tools to help him.

SPEAKER_02 17:35

And given, you know, the report card that we got, right? That you know they know they they noted on on the report card for you know the the third you know trimester or whatever, you know, the third section of of the school year, you know, it said, you know, Ezekiel XYZ, XYZ, and at the end, you know, when Ezekiel had a one-on-one aid, you know, he was able to perform the tasks or to do his, you know, to do to do his work, to do his work, all this stuff. And it's like, you know, we asked for a one-on-one aid and we were told no, he doesn't need it, he doesn't qualify, he doesn't do the stuff. But but yet every day when they would send his progress, you know, on how we did at, you know, at school, it would say, you know, didn't do this, didn't do that, but with one-on-one did, with one-on-one did almost every day. And it's like it's frustrating like as a parent, like we know like what's best for our kid, you know, that we know that would help him thrive, but we didn't, you know, they didn't shut out. Exactly. We weren't we weren't talked to and you know, or weren't understood. And and like, you know, not every teacher is the problem, right? We we've met amazing teachers, but sometimes the issue is the system, the school district, the board, the lack of resources, the lack of training, you know, schools being overwhelmed. Like, I understand that there are a lot more kids with autism, there are a lot more kids that need, you know, support, but it goes back to the district, it goes back to a budget problem, it goes back to allocating the property. Yeah, absolutely, and and the school board and and everything that you know there are ways, you know, to better cater to kids with special needs, but for us in our district, like it's not a priority of theirs. No, not at all.

SPEAKER_01 19:07

And and that's heartbreaking shown because you know, we've spoken to a lot of people and they all have the same answer. Right. They can't do anything.

SPEAKER_02 19:16

No, absolutely. And and I think, you know, like I said, there's so much more we want to talk about, but um, you know, we'll talk about that on the next IEP uh episode episode that we have because it's gonna, you know, definitely be a long and detailed episode. Um, but what I could say is, you know, especially for people listening that do have kids with with autism um or you know, with IEPs in schools, is you know, celebrate all the small victories that you have, um, not only in IEP meetings, but um that your kiddo has, you know, in school. Um and you know, small progress is progress.

SPEAKER_01 19:49

A thousand percent. Any little victory that your kid accomplishes does, it's it's huge. You know, even just like for example, us. Grayson says his name now. And uh he's almost five years old, and to hear him say his name finally is just amazing.

SPEAKER_02 20:13

No, absolutely, and and I think that you know, especially you know, in terms of the victories that we have, like we're so grateful for all of them. Whether it's you know, them, you know, you know, doing something when we ask him to do, whether it's counting to 10, counting to 20, counting to 30, you know, all these all these different things. Um If you could say one thing to the school systems about autistic children, what would it be?

SPEAKER_01 20:37

I would say a child being nonverbal doesn't mean that they aren't intelligent.

SPEAKER_02 20:42

No, absolutely. No, I I think that's you know, it's such a big a big thing because, you know, specifically obviously our boys, but there's so many people that are nonverbal and remain nonverbal, you know, through their life, but they're very intelligent, they have very successful careers, they have all these things. Um, and you know, being able to be verbal or not does engage on how it does smart say whether you're smart or not smart. No, absolutely.

SPEAKER_01 21:07

And what would you say, Curtis?

SPEAKER_02 21:09

I I think you know, I would say stop measuring autistic children only by what they can't do, but see their potential too.

SPEAKER_01 21:15

Yeah, I agree because these kiddos and adults, there's so much potential.

SPEAKER_02 21:21

And they could do so much more if they have the structure and the guidance to do so.

SPEAKER_01 21:25

Just the support, that's all they need.

SPEAKER_02 21:27

No, absolutely. Well, we want to thank you guys for being here with us in our corner of the world. If you're a parent going through an IEP process right now, just know you're not alone.

SPEAKER_01 21:37

And parents shouldn't have to fight this hard just to make sure their kids are seen.

SPEAKER_02 21:41

No, absolutely. Keep advocating, keep asking questions, and keep fighting for your child. If you're a parent, educator, advocate, or someone who simply wants to learn more about autism, we're glad you're here.

SPEAKER_01 21:51

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

SPEAKER_02 21:58

Thank you for listening to Spectrum of Blue's Our Autism Journey. We'll see you in the next episode. And remember, welcome to our corner of the world. It means everything you're here.