The Starting line

Meredith: [00:00:00] Do you remember having that inkling that maybe something might be different with how your child was learning? Whether it was how they held the crayon, or maybe how they read that same sentence and still struggled? Well, pour yourself a cup of coffee. 'cause today we're gonna talk about the starting line.

Hey everyone. Welcome to SpecialEd, IEPs, 504s, Oh my: Conversations with DCSEAC. I'm Meredith, and today I am joined by several other board members. If you guys wanna go around and say hi.

Courtney: Hi, I am Courtney Nangle.

Kelly: Hi, I am Kelly Mayr.

Aleia : Hi, I'm Aleia Mastroianni.

Tashia: Hi, I am Tashia White.

Meredith: Today we're gonna focus a little bit on Tashia. 'cause her and I used to co-facilitate the Mild/Mod parent support group, which is all you parents with kids on IEPs, 504s that aren't in center-based learning.

And she has a story that resonated with me. It's the one thing I remember the most about her when I [00:01:00] first met her, and it's that aha moment when she realized her kid was in special education. We're gonna embark on that journey because we know it can be blurry for parents and she has a very relatable story.

Hey Tashia, you wanna introduce yourself and tell us about that aha moment?

Tashia: Sure. Absolutely.

This is the story. I was sitting at my first IEP meeting an intimidating process in itself and I know we'll get to that at some point. But as they hand out the paperwork and they ask you to sign the paperwork, I was scanning it very quickly before I signed it.

And there was something on there that said this, you were receiving special education services. And I just remember stopping. Looking at it, everything went blurry. My stomach sank. I read it again. I looked up and signed the paperwork. I actually had to reach out to some resources later and say, what does this actually mean that we're part of special education services?

I wasn't prepared mentally to see that, me and my son was part of special education.

Meredith: I think that's relatable to a lot of parents because several of us here our kids started in early intervention [00:02:00] needing special services.

Parents that don't have that experience, it's an aha moment you don't always know, you're not aware. Thanks again for sharing that. Moving forward, you have another fascinating story.

Can you tell us about the moment you first suspected your child was learning different.

Tashia: Yeah, absolutely. Fast forward, I'll start with the end of the story is now my son is a freshman and so he's gonna be 15 this week and he has dyslexia and dysgraphia.

He was diagnosed in the beginning of third grade year. So we're a family that we relocated from outta state. So for kindergarten, first grade. Pre-K and several years of preschool. He was in a private school in second grade he was identified as being slow in a reading group

and was in a reading group with peers. They were sending information home every day saying, your son is behind, but we've assigned him to a reading group and the good news is he's closing the gap. And they attribute it to, you moved from a different area.

Reading, was taught different. We don't know where he started and we're just gonna bring him up to where he should be. [00:03:00] That went through all of second grade. I was getting progress that he was closing the gap. Closing the gap. Then maybe, after Christmas of the second grade the gap that was starting to close started to reopen, or they said, now we're not making the gains.

So we got through the end of the school year. We started third grade, they said last year he wasn't closing the gap. I said where do we go from here? Do you think there's a problem?

We can't tell you there's a problem. But he is not closing the gap. I hear you. What can we do? We can't tell you what to do, but he's not closing the gap. I said, if I hear you correctly, are you saying there might be a problem with my child? And she said I can't say that. I said, do you think he might have dyslexia or some learning disability? Should I get him tested?

At that point six, seven years ago, there was no testing done within our district. That's changed, in these years. So I chose, to get outside testing.

I got the diagnosis of dyslexia and dysgraphia, which I had no idea what either were at the time.

Meredith: Dysgraphia is unique to me. How is that part of the evaluation for dyslexia? How did [00:04:00] they identify that?

Tashia: So it was done during the same evaluation, but dysgraphia has to do with like in the simplest forms, getting things from your head to paper.

Even though he was in third grade, his writing looked like he was three or four. Now he's a freshman. His handwriting might look like first or second grade.

During preschool his writing was very sloppy. His coloring was very sloppy. He wasn't an in the lines kind of guy. And I would always ask, 'cause what do you think? He's still little but he's very, he was very big kid.

His hands are too big for these crayons. So we're gonna get, have him keep using the big crayons, or we're gonna get him a pencil holder every time I questioned it, there was always a response that made me think, okay, it's just that. Looking back all these people giving me that answer were working with the information they knew. It wasn't that they were trying to dissuade me or knew something was wrong. They were preschool and kindergarten teachers in a private school setting and we didn't have access to that type of testing.

Aleia : If I can jump in , Tashia, like the knot in my stomach, I felt when [00:05:00] you were describing that, you could tell they were trying to tell you something was wrong, but they weren't able to tell you what was wrong, and there were, and that's where I'm gonna use Kelly to help me.

There's some limitations on what they were allowed to say or not allowed to say legally, but I always like to compare it to the medical world. That if you went to go take your child. And the doctor suspected an illness, they would tell you what it was, they would tell you what they were gonna do, how they were gonna test it.

And that is not the same in the education world. It's incredibly hard for parents; teachers have suspicions or wonders about your kids, but they're not allowed to share that with you, which I've struggled with as a parent.

Tashia: This was 2019.

Kelly: Historically, in our district teachers were told you cannot use the word dyslexia. If you said this child needed an evaluation specific to dyslexia, it would be on the school district to pay for an evaluation from a private provider.

That was the understanding by [00:06:00] teachers. It wasn't a law, just the understanding. The executive director of special education sent an email saying, you can use the term dyslexia. Legislation passed, last year, now requires dyslexia screeners starting in kindergarten, 'cause we know that is where we can make the biggest impact. If we wait till third grade, like your child and some of my children it is much more difficult to remediate. So we're doing better. But we didn't know, there was a lot of fear with teachers.

That was their understanding that they couldn't say anything. So they're trying to hint

Tashia: and walk the line.

Kelly: And as a parent. I am considering the teacher, the expert. So I am waiting for them to come to me with this information. The teachers, who are the experts, didn't feel able to share that with you.

And so it was a really challenging time. Same thing with ADHD, right? That is a medical diagnosis. Teachers are not supposed to say, we think your kid is ADHD and would benefit from medication because that is a medical term. But they know your kid is struggling. It really is a weird dance that we did. It is improving, I think. It has improved [00:07:00] over years a little bit.

Tashia: Dyslexia was added to his IEP in eighth grade.

Aleia : Let's be real. I have a sense of betrayal when I was a younger parent and didn't understand and now I understand better the bind the teachers felt in, because they see lots of kids and they would see these markers where they're like, we don't know for sure, but we have a suspicion that it could be this.

As a parent, especially since I'm older, in a pre-chat GBT, Google world, that, I was desperate I didn't know the markers; what to look for. My teachers didn't share it with me, I don't think I understood back then that they couldn't share it with me. And it was a really hard position to be in and a really hard position for teachers to be in as well to say, Hey, we see this, but we're not allowed to throw around diagnoses.

It can be complicated when anyone's trying to tell anyone something about their child

Kelly: What it led to with your son and many students is that we had students that got into upper elementary and middle school who were not [00:08:00] reading. And what we do know is you spend kindergarten through third learning to read, and from third on you're reading to learn.

Teachers are not trained to explicitly teach reading past a certain point. So we had this whole sort of generation of kids that got into middle school and they were giving them accommodations, but nobody was explicitly teaching them to read. Because we don't have, or we didn't at the time, reading specialists in middle school and high school, now, I will push back a little that we have one and my kids' bigh school, 2000 students, right? If your kid is on an IEP, they don't work with them. Feels like a lost generation that we just didn't know. And we didn't, as parents we didn't know who to ask.

We didn't know how to advocate for our kids if we didn't have a background in it. It is improving, but.

Tashia: I, I'm in the medical industry, right? When I could tell she was trying to gimme the information but couldn't, yep. It. It felt like to me, say you go and you're taking, you kid to the emergency room and they break their bone and they, and [00:09:00] you see the x-ray and you ask the technician do you see anything?

And you can see on their face they know, but can't tell you because they're not the radiologist. I felt I see what's going on here. I'm a doer. I just want answers. I'm going to look for resources to get the testing.

Fortunately I think , parents and moms, they're really good about finding resources. I knew one mom when we moved here that she had mentioned the word dyslexia and her son, and he was in the same grade as my son. I reached out and asked her where she did the testing.

I got some resources from her. We went through the testing , the person that did the testing was a speech and language pathologist and she was able to really bring me from ground zero thinking dyslexia was just seeing letters backwards to understanding what dyslexia meant.

We didn't have time to make up from kindergarten to third grade having that support system when we talk in these coffee talks here, there's a lot of acronyms and there's a, especially when you go to these IEP meetings and there's one right there you know what that stands for? The most powerful thing she taught me [00:10:00] was. You can bring anyone to that meeting. She came with me to make sure my voice was heard if I had a question, I would ask her to explain after the IEP meeting, they send me the documents and her and I would go through it together and then come back with a plan of anything that we thought, we would benefit my child.

Kelly: Thank you for bringing that up.

The parents don't know they are part of the team. They can bring other team members in. Those assessments are, often not covered by insurance.

They are not cheap. We won't let our own child fail. I have also paid for private tutoring. The flip side of that is then the school says they haven't lost ground, or they're not that far behind. And so we end up as parents and kind of this impossible situation of I can't watch my kids struggle and fail.

But if they're not far enough behind, they won't qualify for special education or an IEP it is difficult. Something we have relied on in this district is that parents will get their kids the supports they need, right?

Not everybody can do that. So I'm excited we are [00:11:00] doing the assessments. At my child's school, many teachers are trained in Orton-Gillingham, a dyslexia specific curriculum.

There are other ones, but it's not required. So it's school by school, how many people are highly qualified in those areas.

Tashia: Yeah. With the dyslexia diagnosis, I've had people ask me.

Do you think it's important that I get the diagnosis from my perspective I have two children, one that's now a freshman and one that's a freshman in college. And the one that's a freshman in college did not get diagnosed till she was a freshman in high school.

And so getting the diagnosis gave her some kind of clarity and comfort in that. Wow. That's why I have to work so much harder than everyone now I understand and it gave her some kind of sense of maybe reason on why her learning in the traditional way was so much harder for her.

And I think that provided a big sigh of relief. Once she was tested and she said, yes, you are dyslexic. Oh, that makes sense now. Is it important to have the diagnosis? In my situations yes.

My son was [00:12:00] diagnosed early enough where we talked about it I always tell him it's his superpower. It's the way he thinks outside the box. He's a problem solver. I always start the IEP meetings 'cause I know some people go in upset.

I'm not worried about my son being successful in life. He's gonna be successful. Wanna make sure he's best supported to get through this educational system. And there's lots of examples of very successful people like Richard Branson's Dyslexic.

Most Shark Tank people are dyslexic and there's even there's even a badge you can get on LinkedIn that says you're a dyslexic thinker and they look for that in jobs. So I think for me I think I always tell 'em, Hey, it's like you're so fortunate, like your brain thinks.

So you problem solve like everyone else is nine outta 10 people gonna think one way. You're the one outta 10 that's gonna think another way and do great things. We just have to make sure you get through this process and feel successful

Meredith: That's very reassuring, Hearing that a kid can have relief oh, that's why I'm so anxious, or that's why I'm struggling. I it's very empowering

Thanks for bringing [00:13:00] that up. We get a lot of parents in that circle. I think something's wrong. I don't know what to do. . And they're uncomfortable because they're worried about offending their child for going to get a diagnoses or asking questions to teachers. next steps is always hard, I think.

Kelly: And I think it depends on the age. Like my daughter, when the term was used by her, a tutor that she was dyslexic. She's I'm dyslexic. She was taken aback. Now in high school, she's an amazing self-advocate. She tells all of her teachers. And so it did give her the ability to get her needs met, but it was a journey.

Schools sometimes aren't set up for our people and they do much better in the world than in school we see a lot of twice exceptionality in that population, they can be both gifted and have a learning disability,

a new field that we didn't even know about. And so trying to help kids meet their individual potential has become important and these kids can be really successful in life. And there are a lot of great stories. Thanks for bringing up, famous rich people.

Tashia: I think you're right. My younger one with the diagnosis things were [00:14:00] hard when he was working with his tutor, fifth grade, middle school, every session, he would start with writing the alphabet, something a three or four year-old would do.

He got frustrated. And then we had a, recession where he said, I'm done. I'm stupid. I'm never going to not be dyslexic. We had to rewire that, you're always gonna be dyslexic. But we had to change how he felt about it. As a fixer, I wanted to prove to him. So we did, like you said, they were highly intelligent. We did a IQ test. Because I wanted him to just have a general, just a rudimentary one, but to know that he was very smart.

Kelly: Every student is different. I came in loaded for bear, like I've been doing this a long time and I'm gonna get all the services for my kid. Then my kid refused to go to special education, so that was embarrassing as a parent. She just refused. And so what we ended up having to do is switch to a consult for her IEP, so she wouldn't lose her IEP.

I know that with my children, if it is not their idea or they don't have buy-in, it can be counterproductive. We were on consult for two years [00:15:00] then she said, I need more help. I wanna go back and get more help. But it had to be her journey. I was ready to write all this stuff into the IEP and have my kid not doing it. Every kid is different.

Courtney: Like Tashia said, it looks different for everyone. Dyslexia and your child may look completely different for another parent and gets confusing. I love that you brought that up because it is such a broad thing.

Aleia : I love the idea of rephrasing, reframing the disability. It's hard when you're like, I have a learning disability.

It already is a hard thing for a kiddo to absorb. I've had that same experience with learning their quote label and taking time to process understand and then it growing into self-advocacy. I love the way Tashia shared if your child is cognitively aware enough

the more aware they are, the more distressed they'll be about their label, explain it to them in full, explain that this isn't going to say you can't be successful. I love the term neurodiverse, where we're like, Hey, your brain thinks [00:16:00] differently.

Our world is changing. We need different brains that see things differently and not frame it as, hey, you're disabled or you are a special education. And not just for our kids, for ourselves, and our brains to realize, our child is in special support that's helping them be successful.

But it doesn't have to be this awful label of, special education. This is something, quote bad. It actually is a huge benefit that's gonna help your child be successful.

Tashia: You ask, what was the aha moment? There were several, right? Messages here and there. My advice to any parent would be, if you get that inkling like that's odd. Pay attention to your gut

Meredith: Thanks Tashia. I know everyone's story is unique, that aha moment is very relatable to many parents who have a child on an IEP or a 504. Thanks for joining us if you want to learn more about DCSEAC, you can find us at dcseac.org. If you like our podcast or a parent that could listen to this and be like, aha, go ahead and

follow. If you have more questions or suggestions send 'em to info@dcseac.org. Thanks for joining and we hope you join us for future conversations.

Bye.

[00:17:00] Bye. Bye.