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The power of self-advocacy for kids at IEP and 504 meetings

Self-advocacy is the ability to communicate your needs. It’s important for thriving in school, at work, and in life. But it’s not something that comes naturally for kids — and even most adults. So how do we help kids build their self-advocacy muscles?

In this episode, hosts Rachel Bozek and Gretchen Vierstra talk about self-advocacy with Melody Maitland, a director of student services and former special education teacher. Melody believes that kids deserve a seat at the table in IEP and 504 plan meetings, and that we should prepare them with self-advocacy skills.

Hear how she helps kids learn to speak up for themselves, starting with self-awareness. Get tips for building your child’s self-advocacy skills at home. And learn why adults are often the biggest obstacles to kids learning to self-advocate.

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Episode transcript

Gretchen: From the Understood Podcast Network, this is "In It," a podcast about the ins and outs...

Rachel: ...the ups and downs...

Gretchen: ...of supporting kids who learn and think differently. I'm Gretchen Vierstra, a former classroom teacher and an editor here at Understood.

Rachel: And I'm Rachel Bozek, a writer and editor raising two kids with ADHD. Today, we're talking about how to help kids who learn and think differently become powerful self-advocates.

Gretchen: Our guest for this conversation is Melody Maitland. Melody is a director of student services at Capital City Public Charter School in Washington, DC. She's also worked in the classroom as a special education teacher.

Rachel: We wanted to talk to Melody because so much of her work revolves around the idea that middle and high school students deserve a seat at the table for IEP and 504 meetings.

Gretchen: Melody strongly believes that's a great place for kids to start building self-advocacy skills.

Rachel: We're delighted to have her here with us today. Melody, welcome to "In It."

Melody: Thank you so much for having me.

Gretchen: As you know, we asked you to come talk with us today because we're interested in learning more about self-advocacy when it comes to students who learn and think differently. And so I think we need to start off with a definition first. What exactly do we mean by self-advocacy? Because I'm pretty sure we're not talking about writing, you know, a congressperson or a letters to the editor, right?

Melody: So essentially when we say self-advocacy, we're talking about students being able to speak up about their needs, especially as students, and being able to articulate their preferences and just overall being able to speak for themselves.

Rachel: Melody, I know in your role as a director of student services, you've worked hard to make sure there's a seat at the table for students when it comes to IEP meetings, 504 meetings, that kind of thing. Why is that such an important starting point for you when it comes to student self-advocacy?

Melody: Yeah, so at least in my experience, if students are not in the room where decisions are made about them, they don't really have a meaningful opportunity to advocate for themselves. And I really feel like, just like we build skills across reading, writing, math, we also have to directly and explicitly teach these skills in the area of advocacy.

So what that looks like in practice is preparing students to meaningfully participate in their meetings. And then once they understand those plans, being able to advocate for those things directly in the classroom, in the hallway, in their extracurricular activities, and beyond.

Rachel: So, when you say prepare the student for a meeting like that, and I'm kind of asking this for myself right now because I have a meeting kind of like this coming up for a 504 conversation at a middle school. So this is pretty on the nose. What do you mean by preparing the student?

Melody: Yeah. So for me, the first thing to know about advocacy is it's very individualized. So I always start with self-awareness. Does the student I'm working with know their interests, their needs, their strengths, their challenge areas? Do they know what a 504 plan or an IEP is? Do they know what they have that plan for — their diagnosis, their differing ability, disability, whatever we call it. And really just engaging in those conversations, because there tends to be this culture of nicety like we don't want to tell them because we don't want them to feel bad.

But in doing so, we create more stigma by not talking about it, right? That silence speaks volumes about how we view differing abilities. So it starts with that self-awareness. And then really comes the communication piece in supporting them and being able to communicate those needs and strengths and challenge areas.

Gretchen: When should we first start involving kids in these school-based conversations? I mean, can we start with really young kids? Is that OK?

Melody: I believe so. I mean, everything's about the developmental appropriateness, right, depending on the student's age, but also their level of comfortability with certain conversations. I mean, this is where parents play a huge role. They know their child. They're experts on them, what they feel comfortable with. And that's why this has to be a partnership between the school and parents, right?

If it's not, what I've seen happen is that the school has a very specific definition of advocacy, has prepared a child in such a way they show up at a meeting. The parent comes and they look like, what is going on here? No one has told me my student's going to be here. I wanted to have that conversation with my child about this very specific area. So that partnership is really critical.

Gretchen: That is such a good point. It's sort of like, you know, when teachers tell parents like we should be on the same page. What I'm talking about in the classroom is what you should be talking about at home so that we're speaking this common language and nobody's wondering what the other one is talking about.

I have a question about all this. What about if your school isn't set up this way, right? Where there's never been kids who attend meetings and it's just not this way at all. How is... You, the parent who wants your kid to have these skills — how can you make this happen? How can you, you know, do this without disrupting the system of the school? I mean, are there tips for that?

Melody: Well, first, I think we should disrupt the systems of the school.

Gretchen: OK.

Melody: Right? Like, and you would hope that it comes from the side of the school, but sometimes that's not always the case. And as a parent, it's perfectly all right and within your rights as a parent to say "My child will be included in this meeting." Right? And that might not make people feel comfortable. But it — the way I explain it, because I've been in settings where students were never part of their meetings. And that is a huge shift, especially for adults.

And the way I explain it is: Let's just say I am struggling at work. I have some challenges. And I need support for those specific challenges. So a group of people meet about me to put together some supports and accommodations that are going to support me. And then as I'm going through work every day, all these things are being imposed on me. And I'm really confused about why is my boss doing this all of a sudden? Or why does so-and-so, you know, why are they interacting with me this way? I don't think that that would necessarily support my growth as an adult.

Now, if you're a kid and now all these people are like, "Oh, well, you're going to be in this small group and you're going to get extended time." And that can be really confusing about why that's happening. And that will cause a lot of potential externalizing behaviors, disruptions. When there is a lack of information — right? — people create their own narratives.

So what is the narrative that that child is creating about themselves if we're not actually just being transparent with them about why? Kids can handle the hard stuff. Sometimes I don't feel like adults can, but that's what we have to do. And so disrupting the system, like any kind of marginalized identity, is what is required.

Gretchen: Mm hmm. Mm hmm.

Rachel: Yeah. This really hits home for me because I'm, as I mentioned, you know, in the process of basically reviewing my middle-schooler's 504 because it's a little bit — it feels a little stale. And I've been kind of signing off on it as we go along. And I reached out to the school recently to say, like, I think we should meet and kind of take a look at what needs to be freshened up a little.

And I was thinking about like, oh, well, maybe my child should be at this meeting. And then I was like, I don't think that's usually how those meetings work. And I kind of just was like, oh well, OK. But now I'm like, well, maybe he's going to come to the meeting.

Gretchen: So you need to be a system disruptor.

Rachel: Maybe. Or maybe they're like, "Why doesn't anybody ask if their kid can come?"

Gretchen: Right.

Rachel: You know, because I have actually found the teachers to be super responsive and open to these kinds of conversations. But a lot of times I'm like, well, it's probably easier to do it if he's not there. But that's really not helping him.

Melody: Yeah, I also find kids are really the experts of themselves. We might put all these supports in place and they say, actually, this is the one thing that I need that's going to make a difference. And now we don't have to invest so much energy into things that are not working.

Gretchen: True. I have another question related to all this, because it's so interesting to me. It just gets tricky, I think. Because I know that for some families, especially maybe families who moved here from other countries who aren't as familiar with the U.S. school system, this idea of advocating and speaking up and having your child come to the meeting and say "I disagree with that" to a teacher is tough. Have you come across that in your work, and how have you helped?

Melody: Yeah, 100%. And I have had tricky situations where sometimes there are disagreements, maybe culturally or just in terms of parenting style, like, right, a more authoritative parenting style. That's like, you know, you don't get to say that you disagree with this. And I have had instances where I've had to ask the student to leave.

And those are the times where it's my job to advocate and really have those direct conversations. I hear you and I'm validating where you are coming from and what that looks like at home. And we are at school, and that's kind of where my turf comes, right? I am an advocate for the student first. And if I can say, "Let me explain why I think your child is saying they disagree with this," they're more likely to say, "Oh, OK, that makes sense," because it's coming from me. It shouldn't, but that's where we are.

These can be hard conversations. I frequently work with parents who have a specific desired future that they've envisioned for their child. Right? And that doesn't always match the child's vision, their future desires, or maybe their preferences, or maybe their needs. So we really have to let the child lead the way in having these conversations.

Many times what this looks like in meetings is a student will say, "I don't think that really works for me" or "I would like to try this." And we all know as adults, I don't know if that's really going to work. But we have to let them try, and we have to let them see if it doesn't work in a structured and secure environment. Because if we don't listen to those small things, they won't tell us those big things. And they won't feel like their voice actually matters. So utilizing those moments to elevate and let the student actually lead.

Rachel: Can you talk about some of the other work you do with your students to help them develop their self-advocacy skills?

Melody: I think — and I talked a little bit about this, the self-awareness piece. What does learning look like for you? And especially when we're talking about middle and high school students. They start to see the differences and a lot of times they don't have the language to understand or express what is happening.

And I often find that if they say something like, "I have a really hard time sitting down, but everyone else in my class doesn't." And then really talking about — I actually had this conversation earlier this week with a student. Like, "Why do you think that is?" And they said, "You know, we're reading 'Percy Jackson' and they talked about Percy Jackson has ADHD. I think I might have that, too." And sure enough, that was the differing ability that the student had the diagnosis. And then we just kind of talked about it.

You know, it's not always easy and sometimes it's a much slower process that involves the student finding out more information about their diagnosis. Luckily, I've gotten the opportunity to work in 6–12 settings, so I've gotten to see them when they're 11 and 12 all the way to 18. And you can see that progression over time. Advocacy is not built overnight. It's a marathon, not a sprint.

Gretchen: Yeah.

Melody: Exactly. So we might not see the fruits of our labor immediately. But over time, students at their own pace — right? — will be able to articulate what does this mean for me? What is a plan? What am I entitled to in the classroom? What do I want to do when I grow up and how do I get there? So like everything with IEPs, 504s, it's just very individualized.

Gretchen: Those sound like really constructive conversations you're having at school. Can we have those same types of conversations at home to help our kids build self-advocacy skills?

Melody: Yes, most definitely. I find that the communication at home and having the open conversations is really important. And sometimes I've had parents say, "Well, I don't really know as much about this," or "You know, when I go to the IEP meeting, there's a lot of jargon." And I understand. But especially when you have a student who's had a lot of training in self-advocacy and they know more than their parent, that can make for some really interesting conversations. And I just — beyond like letting the child lead the way, really making sure that we're continually educating ourselves so that we can have those informed dialogs.

But also, it's OK to say, "I don't know." Right? Let's research this together or let's go — you know, you're having this challenge as it relates to focus in your class and this accommodation isn't working. How about we work on writing an email to the teacher? I, as the parent, am not going to write it for you. But I will sit here and ask prompting questions and support you in that process — so that that the student is advocating for what their needs are, but in a very supported way.

Rachel: As kids get older and more independent, how much responsibility do we want — do we as their parents, as their teachers — want them or expect them to take on in terms of getting the supports they need? And, you know, like, how does that change as they progress through middle school and into high school? And then, of course, afterward.

Melody: In my perfect world, you know, by the time a student is a senior, they should be able to clearly explain every part of their plan. They should be able to say what their differing ability is, how it impacts them, what they need, what they want their future to hold, what supports they're going to need to get there. And more and more as they get through high school, actually co-creating those plans and leading the entirety of that meeting. That's kind of where we want to get, because once they leave us — we have a lot of support in K–12. And then kids leave.

And we know, I mean, all we have to do is look at labor statistics, right? And employment rates. I mean, individuals without disabilities are almost like three times more likely to be employed and that's even when we account for equal educational status. So if we're not really training them to have those real-life conversations, not just the reading, writing, academic skills. It really doesn't matter what we did in K–12 if they can't generalize to the real world.

Rachel: What are some other obstacles to kids being able to advocate for themselves? What gets in the way of that?

Melody: I have found in my work the biggest obstacle are adults. Because there are some — like everything in schools, I think there's a lot of shifts in schools. Like even if we think about grading, right? We all — and when I went to school it was a traditional grading system, ABCDF. And now there's mastery-based, standards-based grading and there's numbers. And parents are like, "Well, what does that really mean?"

It's the same thing with self-advocacy. It's not something that maybe all of us have experienced as a child. And so it's really hard to support that development in our own students if we've never experienced it. And there's, you know, ageism, like there is all the other isms. And sometimes we don't believe as much in the voice of a student because of their age. But at the end of the day, if we don't harness their knowledge and really tap into it, we only do a disservice later, because then they're not building that skill set of being able to identify what their needs and preferences are. And then they go out into the world really unprepared.

Gretchen: Yeah. I think you — Melody, the statement you said earlier about like a lot of times the adults get in the way. I really think you're right. I mean, I just, I think part of it for some of us is that this is just new to us. Right? Like, I know when I went to school, nobody told me I could ever speak up about anything that wasn't working for me.

I still have a memory of being in the school cafeteria and being given only the bun to a hot dog. And the lady had forgotten to put the hot dog in. And I didn't say anything. Because I was like, I can't. Now I don't even eat meat anymore. But that's beside the point. But I just, I still have that memory of myself not being — thinking, "Oh, I guess I just won't eat a lot today, because I'm too afraid to ask this woman to give me the hot dog to put in the bun."

And so I sometimes bring that story up with my kids. I'm like, "I did not want you to be the kid who doesn't get the hot dog. Like you need to get the hot dog." But we know that this idea that I just shared, right, this ability to be able to speak up for yourself, especially for people who learn and think differently, it's super important and it doesn't end after school. So how have you seen your own students take these self-advocacy skills into the world after they graduate?

Melody: I'm humbled to say I've had the opportunity to be a part of a lot of students' journeys. And I think the thing that most excites me as I see kids going to college or supported employment is them being able to go to the disability services office and saying, "I had a 504 plan. This is what it was for. These are the accommodations I need." And to see them know that they know how to do that, they get the support. And sometimes that might still require some role-playing or some prepping or supported conversation, but they can do it.

And I have seen kids who have differing abilities, especially the ones who can advocate, be the highest-performing students in the school. And other adults — because there there tends to be a lot of gap between performance between kids who have disabilities and kids who don't — for them to gain a different perspective. Having a different ability doesn't mean lower performance.

Sometimes they're — you know, I've heard the language of superpower. And the more students know about their differing ability, their disability, and can articulate that, they can start to see, "Oh, wow, these are ways that this really supports me." And it's not always just a deficit mindset, right? So that's the kind of things that I've seen with students over the years.

Gretchen: Well, Melody, this was a fantastic conversation. I know I learned a ton. So thank you for being with us today.

Rachel: Yes, thank you so much. And I've got a few notes for myself.

Melody: Thank you so much for having me.

Gretchen: Before we go, we have a favor to ask. On this show, we talk a lot about finding joy and celebrating successes when it comes to raising kids who learn and think differently. But what about the fails?

Rachel: What about the fails?

Gretchen: Let's be real. We all make mistakes. So let's bond over those kinds of moments, too.

Rachel: You know, those days when you are so exhausted, so done, you find yourself saying or doing the opposite of whatever you think a good parent or caregiver would say or do.

Gretchen: Like when you get that midday call from your kid sweetly asking you to bring their trumpet to school because they forgot it. And you lose it on them, and you find yourself yelling so loudly that the school office staff can hear you.

Rachel: Or your kid seems less than grateful for a present they get, because it's not exactly what they wanted. And your response is to say, "If you don't like it, I'll just send them all back." Even though of course you won't, because you're not a monster.

Gretchen: Yeah. So let's laugh and maybe cry about these all-too-human fails together. If you have a story to share, send us a voice memo at InIt@understood.org. Tell us how it started, what you were thinking and feeling, and how it ended. If you'd rather send an email, that's fine too. You can also send that to InIt@understood.org.

Rachel: You can be anonymous or use your first name. Just know that submissions may be played or read on the podcast. And thanks. We can't wait to hear from you.

Gretchen: You've been listening to "In It" from the Understood Podcast Network.

Rachel: This show is for you. So we want to make sure you're getting what you need. Email us at InIt@understood.org to share your thoughts. We love hearing from you.

Gretchen: If you want to learn more about the topics we covered today, check out the show notes for this episode. We include more resources as well as links to anything you mentioned in the episode.

Rachel: Understood.org is a resource dedicated to helping people who learn and think differently discover their potential and thrive. Learn more at understood.org/mission.

Gretchen: "In It" is produced by Julie Subrin. Briana Berry is our production director. Justin D. Wright mixes the show. Mike Errico wrote our theme music.

Rachel: For the Understood Podcast Network, Laura Key is our editorial director, Scott Cocchiere is our creative director, and Seth Melnick is our executive producer. Thanks for listening.

Gretchen: And thanks for always being in it with us.

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Hosts

  • Gretchen Vierstra, MA

    is the managing editor at Understood and co-host of the In It podcast. She’s a former educator with experience teaching and designing programs in schools, organizations, and online learning spaces.

    • Rachel Bozek

      is co-host of the In It podcast and the parent of two kids with ADHD. She has a background in writing and editing content for kids and parents. 

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