Episode Transcript
[00:00:01] Speaker A: Hi, I'm Maggie.
[00:00:02] Speaker B: And I'm Nicole. Welcome to the DAC Dyslexia and Coffee podcast. We are so happy you could join us. We are both moms and dyslexia interventionists who want to talk about our students and children. What dyslexia is, how it affects our kids. Strategies to help and topics related to other learning disabilities will also be covered in this podcast. Parents are not alone, and we want to give a voice to the concerns and struggles we are having. This is a safe place to learn more about how to help our children grow and succeed in school, in the world. Grab a cup of coffee and enjoy the conversation.
[00:00:37] Speaker A: All right. Welcome to episode ten of dyslexia and coffee. Today's concept of the week, which is where we like to start, is open syllables. So last week we talked about closed syllables. As a reminder, a syllable is a word or a part of a word with one vowel sound. Talked about closed syllables last week. This week, we're talking about open syllables. An open syllable only has one vowel, but it ends with that vowel. So, for example, the word no n o.
In an open syllable, the vowel says it's long sound.
[00:01:24] Speaker B: Okay, so our topic today is another big topic that we'll probably continue to talk in other episodes about, because it's about advocacy.
We're going to introduce it in this episode, and today we're narrowing it down to advocacy related to dyslexia.
[00:01:44] Speaker A: So to advocate means to speak in favor of one of our biggest jobs as moms is to be an advocate for our children. We get a lot of questions about, what does that even mean? What constitutes advocacy? What doesn't.
Seems like about the only information moms come at us with is like, I know I'm supposed to advocate, but I. How do I even do that?
[00:02:15] Speaker B: So how do I get started?
[00:02:17] Speaker A: That's what we're talking about today on the path.
So advocacy really involves three basic steps.
Step one is having the knowledge and skills related to the topic. So if we're talking about dyslexia, understanding what is dyslexia? What are our facts? Right. So our factual background, step one.
Step two is the ability to clearly communicate the need, and then that. Step three is the ability to seek additional resources. So if we're talking about our own child, those steps kind of become understanding your kid and the strengths and challenges and then being able to clearly communicate those to others. And that step three, that ability to seek those additional resources. So how do we locate and come around to. All right, what do we really need to do. How do we really speak on behalf of this child in front of us?
[00:03:24] Speaker B: So what does this mean for us as parents wear our child's voice until they can find their own. So we need to be able to understand dyslexia, be able to describe it, and be able to tell others how it impacts our child.
We need to identify the resources that our child needs to be successful because as we've said in past episodes, one child with dyslexia is one child with dyslexia. There's a very big spectrum of what a child with dyslexia can look like.
[00:04:00] Speaker A: Yeah, absolutely. And that is the part of the advocacy. Right. It's like spreading that, like, no, not just. This is not one size fits all, ever. That's not how people work.
[00:04:12] Speaker B: Correct?
[00:04:13] Speaker A: That's not. I think we might be confused.
So we're going to kind of break this down today, and we're going to talk about advocacy in different areas of our kids life.
We're going to start with school. I think that is what parents are mostly asking us about in our office. Often they kind of, they want to know about school. And, yeah, school is an incredibly important aspect of a child's life. It is one aspect of a child's life, though.
Yes. I, former school professional, I'm very passionate about schools.
School is very important. Hear me say that. But it is not the only place that we do need advocacy for our children. So let's start at the school setting, and then we'll zoom out and give a more holistic view of what a person's life is going to be looking like. So often when I'm getting questions from parents about advocacy at school, I need to start with a reminder that advocacy is an ongoing process. It is more than just preparing for and attending school meetings. I think that becomes the vehicle in which we talk about advocacy.
But it's not just about prepping for those meetings and attending those meetings.
It's much more broad than that.
So step one here, if we zoom out and we use our context for those three basic steps. Right. So our knowledge and skills about this topic that really involves making sure everyone at school has the information needed about this, this student that can really involve gathering information on what has worked and not worked for your student in the past as an IEP team member, often the parents coming to me and I was teaching at a high school level, juniors and seniors mostly, many of those students had had a very long history at school. And one of the biggest pieces of contribution that parents brought to the table was actually, we have tried that and it didn't really work. Or, no, we have never tried that before.
Let's give it a go. Often those parents are coming to the table with a broader picture of who this child is. Outside of only their academics. They have the ability to talk about those strengths and what has worked and what hasn't worked.
It is important to keep in mind that just because something hasn't worked in the past doesn't necessarily mean it won't work this time. But it is really good information to know.
Advocacy also in school involves understanding, being able to clearly communicate.
[00:07:47] Speaker B: Right.
[00:07:47] Speaker A: So it's like those knowledge pieces, and then it's also being able to clearly communicate. This can involve bringing actual documents to the school.
If you have an outside neuropsych eval and you are willing to share it with the school, that can be a big piece of information that is now being able to add to the file and create a better picture of what plan can we put in place for this kid.
Also being able to identify the resources inside of the school, it can be much more than just, I think, when we think of an IEP team, often we think about it's the student, it's the parent, it's the special education teacher, and it's the regular ed teacher.
A school is much, much bigger than that. There often are all their resources available, such as an occupational therapist or a speech and language pathologist, a school counselor, a school psychologist.
If you feel that one of those additional resources should come to the table here, you can advocate for that.
So having some kind of general awareness of what resources does this school even have that my kid can use? Sometimes that takes some work to uncover.
[00:09:28] Speaker B: And it can be very different, right. Between public schools, private schools, homeschool.
Yeah, it's very different. So knowing what your school has is important.
[00:09:38] Speaker A: Yeah, absolutely.
I think advocacy as a term can be really emotionally charged. I think we very much understand our roles as moms is to advocate for our kids. And I think sometimes, even, especially, I think when we maybe are new to it, maybe that's a new role for us. Of course we're going to be emotional when it comes to our kid, and I think that there are some kind of general tips to be had. How do we really go about advocating?
My number one tip is be prepared to listen to all members of the team.
Everyone does need to communicate in a respectful manner. That goes for every single person at the table.
That can be hard. It can be hard to hear a perspective that is not your perspective in regards to your own child.
That's not easy.
You know, be assertive, but not aggressive.
Also hard. When we're talking about our own kidney, we tend to be very passionate when we're talking about our own students, our own kids.
So making sure that we are assertive, we're not going to give up. We know we're not going to just accept.
Not supporting the kid to the fullest extent, but trying not to be that aggressive party is important.
Next one, too. Making sure that we're communicating. Follow up and writing every single time. I think we have kind of talked about that before, but even if I'm having a phone call, I really like a follow up email. On this day, we discussed x topic. This is what was decided. Thank you for your time today.
Keeping those documents in order can be incredibly important.
Document, document, document. Get yourself a big old file folder and keep all that stuff together.
[00:12:18] Speaker B: Or something bigger.
[00:12:19] Speaker A: Yeah, something bigger. Truck. Rent a truck.
Yeah. I think what I really want to add here is in a separate episode, we will be talking about how to teach our kids to be their own advocates. And that is one of the tools that your kid will need, that someday, your kid will need that documentation for lots and lots of reasons. So keeping that all together and keeping that organized, maybe not my strength, I try, but keeping that together and keeping that organized in a way that you can access that information.
I was always struck by the amount of times that as a high school teacher, right. My big job was preparing these kids to go somewhere else.
Often that was a four year school or a tech school or some other institution that was going to continue, take the baton and go.
It was a big part of my job to write that final iep. And it was kind of astounding to be going back those, those students who had high ieps since early ages. It was kind of astounding to me how many times I looked there and went, wow, that's still really relevant to this kid.
That still really makes sense. That kind of line of. This kid really struggles with transitions.
Yeah, relevant.
Still relevant. It was kind of my job to propose what made sense. What does this next person need to know about this kid?
And a lot of times the parents would kind of go, yep, nope, please keep that in there. That's pretty. That's pretty important. Yes. That was written in there in second grade and still relevant in 12th grade.
So that's kind of all of it, right? That's understanding the kidde, their strengths, their challenges. And it's also understanding what information needs to be communicated and how to the next person, which can be your kid.
[00:14:56] Speaker B: So advocacy in the community.
So this can be very, very broad. Right. There's lots of different things that you could do in the community, starting with just your own family versus going to the Capitol. So we're going to bring it down.
So just understanding what we are choosing for our children to go to or be in during when they're out in the community, like, is it an activity that is appropriate for them?
Being able to understand if they're going to need any accommodation in that activity to participate, that's very important. And being able to tell maybe that coach or that whoever's putting on the activity what the your child needs.
[00:15:58] Speaker A: Yeah, absolutely.
You know, that is, I think, pretty critical. And a job that we all have to do.
[00:16:07] Speaker B: Right?
[00:16:09] Speaker A: That, yeah. If we're going to be signing up for an activity that is at a time where my kid is maybe not at its best.
Okay, let's think about if we're adding something to our kid's plate, do we also need to take away another thing, having a finger on our button of, okay, this is broadly what my kid is responsible for.
Does something have to go before we add something else? Am I setting my kid up for success at this activity, being really maybe honest about that?
Or maybe the whole activity is not for your kid. Maybe they can do part of it.
You know, maybe for your student.
Maybe this is a situation where the first hour of this activity we could do, but we're not going to be able to stay for the whole three hour event. Yes.
You know, on a, on a micro level, this can kind of come down to if we're going out to a restaurant, right?
Having your kid preview the menu, sometimes that can be a really effective strategy if you know your kid is going to really struggle to read this menu and let's say you're going out to dinner with your whole extended family and like, this is where you're going, you don't have an option.
Being able to kind of preview that ahead of time and break those things down, that is all in the advocacy bucket.
I think moms who I talk to who are really overwhelmed with this idea of advocacy, I really like to gently remind you that you're already doing it.
You're already. You are. I promise you, you're already doing this.
If you're a mom who's listening to this podcast, you are trying to seek out your resources.
That's advocacy. Good job.
Have a cookie.
[00:18:27] Speaker B: Another question to ask. Is it worth advocating at this moment?
Is it maybe it is. Maybe it isn't. That's really up to you at that particular moment to decide. Right.
Is it something that is going to cause more stress than maybe the benefit? You kind of have to look at.
[00:18:55] Speaker A: All those things and that might change.
That may change.
It kind of depends if you see something out in the community and you recognize that there may be barriers to participation for your kid or other kids finding ways to get involved to the extent that it is available to you. Right.
Please understand that we are not asking you to join the Parks and recreation board and go be elected to school board. And also please understand we're not asking you to go run the world unless.
[00:19:43] Speaker B: You really want to.
[00:19:44] Speaker A: Unless you really want to. Right. So everything we're talking about today has a spectrum.
Yes. That can be getting involved in local events, finding out who in your community is setting these things up, and being able to ask the questions like, hey, I think if we maybe moved this setting over here, I think more kids would be able to participate with different needs.
That is an option that is available and understand that the answer may be no.
Exactly. Some. Some hard truth here is not every event is for every kid, and sometimes it's our job to go. That one is not for me right now. It's not for my kid yet.
That's.
That is also advocacy because that's setting your kid up for success.
[00:20:47] Speaker B: So there's a whole thing about advocacy law. What we just want you to know is that there are legal protections for children and adults with disabilities. And really, if something happens or you need something, you're going to probably hire a lawyer that specializes in advocacy law. Yeah.
There's no way you would do that on your own.
[00:21:08] Speaker A: Nicole and I are not lawyers.
We do not pretend to be lawyers or even play them on tv or this podcast.
But part of being a strong advocate for your. For your child is to have a basic understanding of some of the legal safeguards that are in place for children and adults with disabilities. Your child absolutely has a right to a free and appropriate public education. Period. Full stop.
That knowledge alone is being an advocate.
There are some legal protections. Every year, if your child does have an IEP in school, every year, the school district is required to physically hand you a document that says safeguards of rights for children with disabilities.
[00:22:04] Speaker B: We can compile those.
[00:22:05] Speaker A: Yeah. Oh, yeah. Every year. You got it physically handed every. Every year.
Check that box. Yeah.
But it's also. Yeah, that's required for a reason, because those laws do exist.
Yeah.
[00:22:24] Speaker B: And.
[00:22:24] Speaker A: Yep, sometimes you're gonna need to seek further legal assistance.
Also being aware of kind of current legislation.
You know, Nicole and I followed Ydeh state legislation as it relates to dyslexia and what is happening in schools with universal screeners and the way we are teaching kids to read in school.
It's a good idea to have a basic understanding of what is being proposed and how that might help or hurt our kids with dyslexia.
You know, again, not saying you have to watch C SPAN every day, probably not. Great. I don't think they would talk about our stage. I don't think they would.
I don't think they would. But having a basic understanding of, or at least being able to say, okay, I don't know what's going on, but I. That my kids teacher does or they should.
[00:23:37] Speaker B: Right. Or knowing who in the community might know that.
[00:23:40] Speaker A: Yes.
[00:23:41] Speaker B: Able to reach out to them and ask questions.
[00:23:43] Speaker A: Yeah, exactly.
[00:23:51] Speaker B: So there's a lot of organizations that give advocacy assistance.
Some things based in Wisconsin, because that's where we are and we know of them can include the International Dyslexia association of Wisconsin, decoding dyslexia, Wisconsin facets. They help more with the school advocacy arch, which is the association for Rights of citizens with Handicaps. That's what it's actual name is independence. First and then always you can like do a search on your search engine and find local advocacy groups. They usually come up with. If you do school advocacy or you do community advocacy, usually they will come up. There's also societies for lots of the disabilities out there that you can join and they have lists of people who can help you.
[00:24:53] Speaker A: Yeah. You know, and other parents.
Other parents can be a great resource.
We are better together. I mean, that's just the truth.
[00:25:05] Speaker B: And usually at children's hospitals, they have a resource center. And I know that there's more than just children's of Wisconsin. There's almost a children's in every state. And they all have resource centers. So those are a great place to find resources and many different things.
[00:25:24] Speaker A: If you are local and you're one of our parents. First of all, thank you for listening. Second of all, we are also a resource happily available. That is one of the reasons we're doing this podcast is to spread this information and create a stronger community.
We really do. We need each other. And that's all.
That's all part of this advocacy work.
So before we end our show, I'm wondering if we could both share some experiences we've had related to advocacy with either our own kids or kids. We've worked with in the past?
[00:26:23] Speaker B: Well, I think many of us here at the center have been to school meetings where we advocate for the kids that we work with, and we helped the team understand what they currently can do and how they can also work, how we can work together to help them. Like, maybe we give them a spelling list that we know that the student can do so that they'll be successful, versus, you know, just whatever spelling list they're getting, which is not related to what they're intervention in. So, I mean, I think most of us have had many, many conversations with different schools in different school districts in the area, and we work with the teachers and the team to make it as successful as possible for the student.
[00:27:21] Speaker A: Yeah. Yeah. I think just like every other aspect of raising a child, this is a team sport.
So it's really important that I think moms specifically bear the brunt of this kind of narrative, that it is our job to advocate for our kids and we're our own kids best advocate and all those things.
Largely, yes, I do think that is true. And also, this is a team sport, and there are lots of opportunities to come around a kid and have a team approach, and that is what also leads to the best outcomes for kids.
I have had several opportunities to attend ieps on the behalf of the students that I see here at the center.
I've also had a lot of opportunities to connect with outside institutions, I guess I would call them kind of our four year schools or even tech schools.
I think the advocacy work I do here involves a lot of phone calls, a lot of follow up emails, a lot of doing that education piece, doing things like this.
All of that is that advocacy piece. And it's probably my favorite part of my job, honestly. I love the working with the kids, but this gives me the joy chills.
[00:29:06] Speaker B: Yes. And I think maybe for us, this topic we could go really deep into, because this is something we're both passionate about, but we only have, you know, a certain amount of time to talk.
[00:29:22] Speaker A: And the point is connecting.
[00:29:25] Speaker B: Correct.
[00:29:25] Speaker A: With parents. You would not enjoy our conversation.
[00:29:30] Speaker B: Some of the stuff we do is a little bit beyond this conversation right now.
[00:29:37] Speaker A: That's a separate show.
All right, so we like to end our show with talking about what's going on in our lives outside of dyslexia.
So.
Hmm. What is going on? What is going on outside of dyslexia?
[00:29:58] Speaker B: Well, I was going to relate it back to our topic today. I was going to tell a story about when my oldest went to the library to get her first library cardinal.
She was old enough that the librarian thought she could sign her name, but she actually couldn't.
So this is one of those. Do you advocate or do you not advocate? Well, at this point, I did not advocate for my daughter because there was a long line behind us.
It would have made our other children upset in late for their activity that they were really hoping to go to. So in that moment, I didn't tell the library anything. I just kind of let it play through. And we did get the library card, and then I did follow up with an email later to the library and just kindly said, some children cannot write their name at certain times just because of a disability.
And forcing them to try in front of a bunch of people is not appropriate.
I had a really nice letter back saying that they were sorry, but that's kind of just something that I did.
She can write her name now, but at that time, she couldn't, and it was a big thing for her.
[00:31:22] Speaker A: Yeah, well, and I think as much as I'm not pleased that that happened to you or your daughter, I do want to kind of point out that you did advocate for her, though. You made a decision in the moment what was best for her was to move on and then write a letter after the fact. That's absolutely advocacy, and I hope that person. Right. I hope that person understands not to do that to another kid.
[00:32:00] Speaker B: That is.
[00:32:02] Speaker A: Yeah. That's why. That's why we do it. Right. So not happy that that happened to you or your daughter at all.
But that is, I think what. What does lead to those changes is when we have those opportunities to do that. Yeah. Life outside of here for me right now.
Oh, my goodness. I think we're just trying to stay afloat. We have so much going on.
We are in kind of the throes of. My son is in first grade. Right. He's got to read these books every night. And it's a little bit of knowing too much about what I do here because he's got to read his books every night. And now my daughter, who is in 4k, also insists that she has what she is calling her baggy books, which are her school library books, that she must also read every night, despite the fact that she's really not ready to read. But let me tell you, if you tell her a word, she has to start the whole book all the way over.
[00:33:13] Speaker B: Oh, no, really?
[00:33:14] Speaker A: All the way over.
So we have read. Yes, yes.
We have read the grouchy ladybug, um, 52 times, maybe this week.
[00:33:29] Speaker B: I'm sorry. That's.
[00:33:31] Speaker A: Yes.
[00:33:31] Speaker B: Really funny.
[00:33:34] Speaker A: If you know her. I do. Yes.
That's her.
[00:33:39] Speaker B: Yeah.
[00:33:39] Speaker A: That's what we have going on.
Oh, well, thank you for listening.
Please follow us on social media and reach out if you have questions or you would like us to discuss a topic. If you like our show, be sure to follow and rate our show on your podcast. Players. This is how we reach more people. That's how we can help more families. So thank you for listening.
[00:34:04] Speaker B: Thank you.
