Dyslexia Advocacy for Parents, Part 1: Gathering Data and Documenting Concerns

Dyslexia Advocacy for Parents, Part 1: Gathering Data and Documenting Concerns

The episode launches a new advocacy-focused mini series focused what parents can do when schools say a child’s reading and spelling are “fine" even when a parent knows it's not. Michelle explains why the process is frustrating, how parents can move it forward without waiting on the school, and why school staff may share incomplete or distorted policy information. 

This episode emphasizes gathering data: finding out what tiered supports (RTI/MTSS tiers 1–3) are in place, what decisions and district procedures guide movement between tiers, and why a child should not remain in tier 3 without next steps such as considering an IEP. The host urges parents to document concerns and conversations in writing, request cited policies, ask clarifying questions about discrepancies, and scrutinize screeners and reading levels for what they actually measure. A free parent dyslexia screener is also mentioned, and the next episode will cover the referral meeting.

Want more information like what you heard in this podcast? The Dyslexia Advocacy Toolkit with eBook can be found HERE.

00:00 Welcome and Series Intro

00:59 Why Advocacy Matters

02:39 Schools and Policy Myths

04:42 Start With Tiered Supports

10:31 When an IEP Applies

14:43 Document Everything in Writing

21:35 Staying Calm and Being Heard

24:53 Screeners and Reading Data

29:00 Reading Levels and Skill Proof

32:13 Wrap Up and Next Steps

Transcript

SPEAKER_00 0:00

Hi, and welcome back to the Days with Dyslexia podcast. Today we are going to be starting a new mini series. We just finished up a mini series on the different types of intervention available. And so we're going to switch gears a little bit in this mini-series, and we are going to focus more on advocacy. This book is going to be sharing a lot of information from my advocacy ebook called Dyslexia Advocacy for Parents: What to do when the school says your child's reading and spelling are fine, but you know it's not. Now, I think this is going to be another five-part series, but it depends on how much I get through each time. I try to keep these to about 30-minute podcasts. If you want more information and the bonuses that come along with the ebook, then just use the link in the tool and you can get access to the toolkit. So we are going to be talking about dyslexia advocacy. This can be a really frustrating period for parents to go to. It was really frustrating when I went through this as a parent. And here's part of why it is frustrating. Because when you're a parent and you know something is wrong with your child, you know that they are not learning to read and spell as easily as they should. And you go to the school and you're like, my child is struggling, and you're told, oh, they're fine, we're doing all these things, you don't need to do anything else. Don't worry, just read to them more at home. That's really frustrating as a parent to hear. Most parents think that they have to wait for the school to say, okay, now we notice that there is trouble learning to read and spell. Also, here's what we're going to do. But what most parents don't realize is that there are some action steps that they can take to move the process along maybe faster or earlier than things would happen if you waited on the school. You don't have to wait on the school. The other thing that's really frustrating in this is that often parents are given inaccurate or incomplete information. And it's not it's usually not because the school is intentionally giving parents bad information, it's probably because they themselves don't have the right information. Okay. I'm gonna tell you that I worked as a speech language pathologist in the school for several years. But when I went through this process as a parent, and I knew that my daughter needed more than what the school was giving her, and I knew that she was not fine when they were telling me that she was fine, and I started actually reading the law and actually reading the school policy, the information that I found in there as a parent was much different than what I had been told as a school employee or as someone who worked in the school. And so it seems that when I was working in the school, I was given a lot of information on how to protect the school. But as a parent, our job is to protect and advocate for our child. And so there's a lot of information that parents need and can benefit from that employees at the school don't necessarily have. You would be shocked at how many times I hear statements made by school employees, and then I ask them to please educate me further and send me the policy to support whatever it is that they're telling me, and then the policy does not exist. But that school employee truly believed that this policy was in place because it's something that they had been told by someone else. So sometimes it's this big game of telephone before it gets to the parents, and what the information that the parents are getting are distorted from the actual policy that should be followed in the school. We are going to follow along on this podcast in the same order that information is presented in the ebook. So we are going to start with where chapter one is, which is gathering data. Now, one of the first things that you need to know as a parent, because when parents call me all the time with concerns, and I'll say, okay, what is going on at the school right now? What is the school doing? What are they all what do they already have in place? And many times the parents don't know. So if that is you, if you are a parent that feels like your child needs help and you don't even know what the school is doing to try to help, that's where you need to start, right? So you want to reach out to the school in a respectful, kind way and just say, I notice that my child is struggling to do A, B, and C at home. I feel like these are things that they should be able to do given that they are in this grade or that their brother and sister could do at this age. It just seems like we should be further along. Do you have any additional supports already in place at school to help my child? And this might sound like some schools call it RTI response to intervention or MTSS, multi-tiered systems of support. And so this sounds like tier one, two, or three. Okay? All children get tier one instruction. That is just general classroom instruction. Then some kids also get tier two instruction, which is small group instruction. Now, sometimes in some schools, all that means is they get extra time on a computer software system to work on reading and spelling. Sometimes it's working in a small group with the teacher. And so you need to ask what if they said, oh, they're getting tier two reading instruction, what does that look like? Some kids then additionally get tier three support. This is extra support the child can receive outside of an IEP. The child does not have to be on an IEP to get tier two and three support. It's just extra help within the general education setting. And again, if your child is getting tier three, they are also getting two and one. They don't stop getting whole class instruction because they're getting tier three instruction. So tier three is supposed to be slightly more individualized, but they do not have goals with specially designed instruction like they would on an IEP. So it's still part of the general education environment. The other thing that you want to find out as a parent is what policy is in place for helping support children who are in tiered reading instruction? So if your child is in tier two, what are the goals? Because they should either improve and go back to tier one, or they do not show improvement and they need more help and they go to tier three. Once the child is in tier three, what's the plan? What skills do they need to improve to get out of tier three and the with the goal of moving back to tier one because they're better, because they don't need that extra help anymore. But a child should never live in tier three instruction. They're either getting better with the extra support, and they eventually they need less support, or they are not making progress, and that's when the school starts to talk about things like an IEP. But a child should never live in tier three forever. That is not the goal of tier three, and schools should have some sort of policy or procedure in place that they can share with families to show you this is how we manage and support kids who are receiving extra instruction via tier two and tier three. And so it might be that they want kids to be in tier three small group reading instruction for six weeks before they make a decision. Oh, these this child is now getting better, and we can move them back to tier two. Or well, we're making progress, so we're gonna stay here. But these kinds of decision-making processes should be happening within tier two and three, and as a parent, you have the right to know what that is. Your child should not stay in tier three all year long as a struggling reader. If that is the case, they need more support, and that's when we should be looking at an IEP. So find out where your child is, find out what the policy and procedure is in your school district because it's going to be different across all districts. The individual district has the power to decide what to do with tiered reading instruction. So as a parent, you can ask for that information and they should give it to you. That should not be a secret, it should be something that you can pretty easily get. If the teacher herself or himself cannot give it to you, then reach out to an administrator. But somebody somewhere knows the process for that. So find out where your child is. Because odds are if you are already on an IEP, you don't need the first few parts of this mini-series that I'm going to give you, because the first few parts are going to be about the process of moving to an IEP when it's needed. Do all kids with dyslexia need an IEP? No, definitely not. Does having a diagnosis of dyslexia automatically qualify your child for an IEP? No, definitely not. So those are some things that we're going to be talking about because even with a diagnosis of dyslexia from an outside provider, your child still has to be found eligible because there is an adverse impact on their educational environment. The school still has to go through a process to put your kid to determine if your child needs an IEP. They cannot skip over that process just because you have an outside diagnosis. Now, unfortunately, what happens is a lot of times the school doesn't want to start that process for whatever reason. And so parents seek outside evaluations because they can often happen faster. And then they take that evaluation back to the school to start the process, but it doesn't necessarily have to happen like that. And just because you have an outside evaluation doesn't mean your child automatically gets an IEP. IEP stands for an individualized education plan. I should have said that earlier if you don't already know. And an IEP is something that your child can qualify for through various educational disability categories through IDEA. That is a federal law, stands for Individuals with Disabilities Education Act. Now, another thing that's confusing a little bit is to people is they will say, I think my child has dyslexia, can you work with them at school? And the school will say, Oh, we don't evaluate for dyslexia. And that is again one of these half-truths. Because while dyslexia is not its own educational disability category through IDEA and through many states, it is listed specifically under one of these disability categories. So dyslexia is included in the IDEA Act, but sometimes it takes more work on the parents' part to get support in place for that and to get the school to acknowledge, oh, we can support these kids with dyslexia through an IEP, and parents have to, unfortunately, parents have to learn the correct wording to ask for. It's like this secret special education language that often parents have to learn to move the process along instead of educators saying, oh, dyslexia, you know, here's how we support those kids, and explaining that it's although it's not an educational category, you cannot qualify just because you have dyslexia, but here's how we support those kiddos. It's actually through this other educational category. So what we're going to be talking more about today is the data collection phase. And when parents call me, I always ask them, well, what are you seeing at home that makes you think your child is struggling? And they can often list off a huge number of things, right? Well, they're in second grade and they still struggle to sound out easy words. Well, their spelling is really bad and I can't even tell what word they're trying to write. Or they're in third grade and they're still spelling very phonetically. I get messages that the teacher says that they're having trouble at school, but they've got A's on their report card, and so they say I can't get extra help. Or things like that. So parents often are able to list very specifically why they think their child is having trouble. And so this is documentation that you need to communicate with your teacher. So teachers are busy people, right? They have a whole classroom of kids. And sometimes if you have an in-person or on-the-phone conversation with them, you as a parent might recall exactly what that teacher said to you, but often the teacher is not going to recall exactly what she said to you. She this is probably a conversation that she has, or very similar conversations that they have as a teacher many, many times over a period of years. And they just they're not going to recall a specific conversation when it comes up months later. So what I encourage parents to do is to have these conversations via email. If your school uses some other form of a communication, so for example, my kids' schools, they use an app called Dojo where I can send messages back and forth with their teacher. But the problem is I can't go back to previous years or even back past a certain date to bring up old conversations. Maybe if I pay for the app, but I don't know, I never have. So, but if I have these conversations on email, I can keep them as long as I want in my email. And so there might be a point where you've had a conversation with a teacher and you need that teacher's information to help support the fact that your child is really struggling in school and we need to either move forward with an evaluation or not. So I encourage parents to have this conversation through email. You can track conversations much, much easier. If you happen to have a conversation with a teacher, either maybe you go to a school function and you guys have this conversation in person and it was really helpful. Help that teacher then by sending a follow-up email just to confirm the conversation. Dear Miss Smith, thank you so much for taking your time to talk to me last night during the open house. I know I told you that I think little Susie is having trouble. These are the things you told me you guys are doing at school to help support her. My understanding is that support is going to be in place for the next few weeks until you decide either to move her back to tier one or down to tier three. Is that correct? So do you see how that takes a conversation that you had in person and then documents it? You're presenting what you understand the content of the conversation to be in writing for the teacher to review and then to confirm. Because if you misunderstood something, that is the teacher's opportunity to clarify it for you so that you do understand it. So having things in writing is important. You can do the same thing if it happens on the phone. Let's say the teacher calls you, it's a good time to talk, you want to have the conversation on the phone, do the same thing. Follow it up with an email. Dear Miss Smith, thank you so much for taking the time, for taking time out of your day to call me. I appreciate the conversation we had about little Susie. This is my understanding of the information we discussed. Am I understanding this correctly? So again, you've taken a conversation on the phone, you've presented it an email. Right? This is going to make sure that you are both on the same page if you have to discuss this particular conversation months later. Because let's face it, moms are busy too. Our memories are not great. My teenagers, sometimes I think they're trying to make me crazy and actually do make up conversations, but they're like, mom, remember you said blah, blah, blah, blah, blah, and I have no idea what they're talking about. So moms are very busy. We don't always remember conversations accurately. Teachers are very busy, they don't always remember conversations accurately. That is the purpose of putting oral conversations into written language. That's the benefit of written language. It freezes language in place so that we can review it later. That's why learning to write is so important. Right? Keep everything documented. If you are talking to someone at the school, whether it's a counselor or a teacher or some sort of administrator, and they cite a policy to you. Oh, we can't do that because our policy is blah, blah, blah. You have the right to ask to see that policy. Now, you are asking to see this policy so that you can understand what's going on better. So word it as such. Right? You catch more flies with honey. Oh, I didn't realize that was your policy. Can you send that to me so that I can better understand what's going on in this situation? So that I can be better informed as a parent. Now, unfortunately, what happens is sometimes parents are told that these policies exist, and then when we actually receive the policy, it's not maybe quite the same. But many times they do. I've asked for many policies from my school district, and sometimes I got the policy and it was really helpful, and it matched exactly what they said, and it did make me more informed as a parent. And sometimes there was not a policy, or it was a little bit different, and then that allowed me to ask follow-up questions. But again, having the policy that the teacher or the administrator is referencing about information that you as a parent are trying to understand when you both have access to the policy, it's going to help move the conversation along. You want to make sure that when you request these things, you're doing it in a way that's respectful, right? So you want to come from it as you want to learn more as a parent. Ask a lot of questions. You don't understand things, you ask the question. Help me understand this, right? You get conflicting information. Help me understand why I get emails from the school each week telling me how much trouble my child is having and how much they're struggling to read, but then I get the report card and it's all A's, and so it doesn't look like they're having any trouble. Can you help me understand that difference, that discrepancy? Because that seems really confusing to me as a parent. So ask a lot of questions. Do it in a way that's respectful, but direct. We have to learn to be direct. Now, in my early years as a parent, I probably wasn't as direct as I needed to be. And then you start having to advocate for what your child needs, and you run into resistance and you realize that you're losing time, precious time that your child needs for early intervention. And so sometimes we can get very emotional. As parents and myself included, right? I cried at many ARC meetings and went and spoke at many board meetings with tears. And so it's easy to get very emotional because it's your child. It's your child that you know needs help. And you know that the school and the people in the schools are supposed to be the people that we can trust to help them. And so when we are being told as parents, oh, they're fine and they don't need this help, and we're doing all the things that we can, but your child is still struggling, it can be heart-wrenching. It's a heart-wrenching experience. I remember when my daughter was going through this and I knew that she needed help. And as I learned more about how schools teach reading, and at the time my daughter's school was not using a very good way to teach reading. And as I learned more about the better ways that we could teach reading, I started speaking at the board meetings. And if you've ever pr spoken during public comment at a board meeting, you'll know that there's not really a back and forth, right? You get three minutes or five minutes, and you get to speak your piece, and then that's kind of it. And at one of these board meetings, I was reading my statement about how there is a much better way that we could be teaching children to read, and how is it that the school is not doing these things and following this research that we now know is available. And anyway, there's the tears. I'm tearing up right now talking about it because it's such an emotional thing and it brings back traumatic memories. And the principal in my daughter's school turned to me at the end of the meeting and she said, Michelle, we hear you, we hear your concerns, and I know that we can't share everything with you right now, but we hear what you are saying and we are trying to do better, and that meant a lot to me. And I will never forget that, and I appreciate that from her. And things did get better in the school district, but just to know sometimes as a parent that we're being heard is really important. So, you know, because you're saying my kid is struggling and you're just being told they're fine, they're fine, read to them more. And you we know that as parents that we're reading to them more, we're reading to them all that we can, and we've probably read to them every night to put them to bed since they were babies. That's not what they need more of. They need different instruction to help them understand it, and that's not what we're hearing from the school. We're just hearing that they're fine and keep doing these things you're already doing, and it's placing the blame back to the parents, which is not where it should be. You know, it means a lot to know that we are heard. So I think I'm talking too much in this beginning part. So continuing on with data collection, whoo, get myself together. Continuing on with data collection, we want to know where your child is, right? You can also ask, have any screeners been done? What are those screeners? What are the results of the screeners? And how to understand them. Now, in the ebook, I talk about map scores. That is one type of screener that was used in my area for a long time. I'm sure it's being used somewhere still in the country, but map is a terrible measure of a child's decoding skills. It is. Mostly because in first grade it is read to them. And they answer questions based on information that was read to them. So they can score really well on map testing because the questions are read to them. Well, if we think that our child is having trouble reading, we need a screener to know how well they're reading, not how well they can understand what's read to them. Now, some children do have difficulty with that. Not usually kids with dyslexia. When we're thinking about reading comprehension, which is what map testing looks at, there's two main parts. This comes from something called the simple view of reading. There's many frameworks of fluent reading and spelling, but this one is really, I think, one of the easiest ones for parents to understand. So reading comprehension is an outcome of various skills. Some of those skills have to do with decoding of the words, right? How well can your child figure out what that word on the page says? Times linguistic comprehension. How well does your child understand the meaning of the words once they're decoded or read to you? So if the screener reads the information to the child to determine reading comprehension, well, they've taken out the word decoding part of that. It's not being tested at all. But that's often the area where kids with dyslexia have difficulty. But we need to make sure that the screener that's being used looked at phonetic decoding skills. Now, a lot of schools have done away with map testing in favor of iReady, at least in the area where I am. Of course, it can be different across the country and different schools use different things. This is certainly not the only thing. That's why you need to ask and understand what's going on at your school. Lately, what schools in my area have been using are iReady. iReady is, in my opinion, better than MAP, but still not great. For example, iReady was doing screens, and if your child was in an older grade, I think third grade and up, it was giving a tested out result for some early decoding skills. Now you would think if you read tested out, that means that they did so well on that part of the testing that they tested out of needing that type of intervention or support. However, what that meant for older kids was that they were old enough that they were not even given those sections. They have since corrected that, but a lot of times parents were being told, oh, look, your child doesn't need support, they tested out of sound awareness skills. They tested out of these early sight words, but they weren't even given the part of the assessment. And so that's why it's really important for you as a parent to ask these follow-up questions. If you are given information from the schools that says your child is doing great in this area and you know that they're not, right? Ask more questions until you understand. Let's talk about reading levels too. This is part of collecting data, reading levels. So you might be told, oh, your child is at a reading level with this, and they might be you might be given like a letter name, for example, reading level BB or something like that. You need to understand what that reading level means and what it measures. Now, one thing with these reading levels that are identified with letters, often they're completely arbitrary, means they don't really mean anything. So, whatever reading level you are given as a parent, here's what I want you to ask your teacher. What skills does my child need to learn to move to the next level? What skills have they learned in order to get to this level? And that's going to start a conversation about the very specific skills that your child has developed and what they need to learn to become better at reading. And if they say your child has developed skill A, B, and C and they cannot do that at home, well then that's an additional conversation that needs to happen. Because if your school uses a computer program, sometimes kids are just learning how to click through the buttons and they've clicked it wrong enough that they figure out what they need to click to get it right. For example, my daughter would come home with these certificates saying, Your child has passed level 13 of whatever program they were working on and has mastered this skill. But if I actually asked her to use that skill in a meaningful activity, like when she was reading a book or trying to write a sentence, she could not do it. So we have to be able to use that skill outside of clicking the right button on a computer program. So all of this information you're collecting is part of the data collection phase. Have an early reader and they are struggling. I do have a parent dyslexia screener available on my website for free. So you can go and access that if you need a way to collect more data to show that your child is struggling because it's going to look at skills that kids with dyslexia typically have trouble with. If you have an early reader and your kid aces this screener, well, they're probably having trouble for a different reason. And you can share these results with your teacher. In fact, it has a letter that you can use in there to help you. You can send it, you can do the screening, fill it out, send it to your teacher. It's a great way to start the conversation. That's available for free on the Days with Dyslexia website. It's called the Savvy Parent Dyslexia Screener. So that is part of the data collection process. So to sum up for today, we are going to be going through the process from when you first figure out that your child is struggling to read and spell, and what will need to happen to get an evaluation, and then after the evaluation, how to determine if your child needs services. This is designed to help you understand the process because it doesn't guarantee that your child will end up on an IEP because not all kids with dyslexia qualify for an IEP, but it's going to help you understand the process. Because here's the thing teachers and people that work at the school go through this process hundreds of times. Hundreds of times. A parent probably goes through it once. They go through the eligibility for an IEP once, possibly twice, if they were told no at first and they have to go through it again. And so the first time we do anything, there's a huge learning curve because we're learning the process. And so parents are at this gigantic disadvantage because it's the first time that they've gone through this process. And by the time they're through it, they're like, man, I wish I had done A, B, C, D. And so that's exactly why I created this ebook because the first time I went through this process, I learned a ton. I had the advantage of having previously worked in a school. I knew where to pull up the policies and procedures for my state and read them myself. I had a background as, you know, in speech language pathology and dyslexia as a language-based disorder. I dove into all of that professional learning. Most parents cannot do that and don't know how to do that, and don't even know that they should do that because they have complete trust in the school. And I wish that was enough. I wish that I hadn't had to fight, feel like I had to fight the school to get the services in place that my daughter needed. But there are many times where it felt like a fight. Now it's a happy ending, right? Actually, it was just a week ago that she's in eighth grade and we took her off of her IEP and her reading and spelling are now both at grade level. So there is a happy ending, but the beginning was rough. And if I can give other parents some of this information and try to help make it not so difficult, that's what this mini series is about. So again, you can get the ebook online if you want all of this information right now, because in the ebook I have QR codes that link to things like policies that I mentioned in there, right? Because it's important that you understand it. You'd have all of this information in writing. Remember how important I talked about that being had to have information writing so that you can review it. It also comes in a toolkit. It's not just the ebook, but there is a toolkit with lots of other things that you can use to help yours get through this process. It has an IEP and me fillable PDF template that you can use if your child gets an IEP so that they can help start advocating for themselves. It has some ideas for IEP and 504 accommodations. It has a say this not that bundle. You know that your child is having trouble here with ABC. Here's a really good way to ask that of the schools to help you speak that secret special education language that the school often uses. And it gives you access to a free webinar recording called Strategic IEP Planning for Children with Dyslexia. Because just getting an IEP is not enough. You have to make sure you have a strong IEP. And if you want your child to get a specific type of intervention on that IEP, well, there's a very strategic way that you can go about working through different parts of the IEP in the meeting to get that program in place. So that is part of the Dyslexia Parent Advocacy Toolkit that comes with the ebook. So I will link that in the show notes, and I will see you for the second part. Come back for the second part. The second part is going to be about the referral meeting. What the referral meeting is, what we need to get it scheduled, and the goals of the referral meeting, and then what to do from there.