E117: Your Parent Advocacy Circle of Influence
THE DOORS TO THE ULTIMATE PARENT IEP PREP COURSE ARE OPEN! It's negative out there. Like depressing. But you need to search for resources and make connections because this IEP journey can be a bit lonely and intimidating, right? So how do you take negitive experiences of others and make sure that doesn't happen?
THE DOORS TO THE ULTIMATE PARENT IEP PREP COURSE ARE OPEN!
It’s negative out there. Like depressing. But you need to search for resources and make connections because this IEP journey can be a bit lonely and intimidating, right?
So how do you take negitive experiences of others and make sure that doesn’t happen?
Because the truth is…that SOME IEP EXPERIENCES ARE AMAZING!!!
And how do we get THAT amazing experience…for you?
In this episode we cover:
1) Where you will find negitivity in parent advocacy
2) How to take what you need, and leave what you don’t
3) How you focusing on your circle of influence actually has a bigger impact than focusing on big news stories or other people’s experiences in the past.
If you want help prepping y
THE DOORS TO THE ULTIMATE PARENT IEP PREP COURSE ARE OPEN!
E117: What Are We Even Advocating for?
[00:00:00] When trying to keep up on new IEP information and what’s going on across the United States. There is a lot of negative that pops out at you. And when we are looking at the state of our IEP system. I’m going to be honest, it’s pretty depressing. But if you’re new to me, then you may not know that I’m pretty realistic about life in general and most, especially in life and IEP advocacy, I’m a realist, but if things are so negative, what are we fighting for?
It was only after I had some amazing IEP experiences that I thought. Wait a minute. This is the way it’s supposed to be. Why aren’t all IEP is like this.
So stick with me because today we are getting really real about the state of IEP the negativity that’s out there when you encounter it, because you absolutely well. Yet, really focusing on what you can change, because I promise you that if you commit to becoming an effective parent advocate, [00:01:00] you will make a difference and we’re talking today about how exactly you do that.
You are listening to the parent IEP lab, the podcast that helps you get an effective. IEP plan for your child so that you can get them supported and learning in school. I’m Bentleys and Feld occupational therapist, who started to notice trends in parents who got effective IEP for their kids. Without having to fight the school.
My mission is to help you learn the pillars of knowledge I saw these effective parents use in their advocacy. And also to provide insight or knowledge from the school side, so that you have context to turn that into informed, intelligent questions that actually get you somewhere with the school IEP team. So let’s dive into today’s topic and think about what we can change and tweak to get the right formula for success for your child to learn and grow at school and also focus and build your advocacy skills to impact more than just your child, but your school and your district.
And possibly even the state and the nation, welcome to the lab.
Well, if you haven’t heard quite yet, maybe somebody has [00:02:00] shared this episode with you to listen for the first time. If so, welcome. But if you’ve been around for a little bit, if you’re on my email list, if you follow me on social media at the IEP lab, I am shouting from the rooftops this week that the doors to the ultimate parent IEP prep course are open right now.
So, if you want a solid framework to learn the IEP system help in determining priorities for your child for the next calendar year. And yes, I mean, narrowing it down to two priorities for the year.
And yours truly being your guide and writing your parent input statement in order to kick that IEP meeting stress to the curb, then I am your girl. Use the link below this podcast in your podcast player to check out the ultimate parent IEP prep course, or go to the IEP lab.com/course to check it out
doors close soon. So check it out today. Now let’s get into the episode.
Okay. So today it’s going to be a little bit of an emotional roller coaster. Because first, what we’re going to do is we’re going to talk about the state of IEP is across the country and I am a [00:03:00] firm believer. And that our IEP system needs to be totally trashed and thrown out the window and redone because I don’t think that this particular system is working. I think it’s very deficit space. I think it’s very negative.
And really in light of everything positive that’s going on around disability rights and the neurodivergent movement and all of these amazing movements for inclusion and. Just some amazing things happening out there. There is also some very, very dark stuff. So my personal views on news in general is that.
I just feel like it’s all clickbait anymore. And so, yes, I do think it’s essential to keep up on the news cases that are coming out and the Supreme court rulings and things like that, which is actually what we’re addressing today. But as a whole I’m very skeptical of news outlets and how they pertain to me. There’s always another side of the story. There’s always more [00:04:00] dramatic words that are used to tell the story than is probably reality. So. That being said, I just wanted to disclose that that’s my general thought of news, because if you’re a news junkie, like my husband is, then you would probably think differently and you might take this into context differently into your own life.
So, this is what we’re talking about is specific cases. About Supreme courts or, you know, state Supreme courts bringing these cases and ruling in the favor of the special needs person or their family. And so what’s happened. There was one in Colorado just a couple years ago where they talked about, this is not enough, this, this service hasn’t been.
Given enough. And so really the result of that is that you can’t turn back time, right? So this kid loses out on access to instruction for how many years, because things weren’t done correctly and the school fought doing things correctly. So there was [00:05:00] actually a couple of more recent articles that were posted in the Facebook group. And I try to keep outside links from coming into that Facebook group, because I can’t verify
the truth of them. Right. And I feel like if they’re not verified or if there’s something that I don’t really know about, then I just want to keep it out of the group, but I kept this one in the group. And if you want to see it, you can still go to the Facebook group.
The link to join the Facebook group is the link below this podcast in your podcast player. And so you can, you can look at that specific case but what happened was. Somebody was denied appropriate education for a very, very long time. Because the school kept saying, oh yeah, it’s it’s the right education. Oh yeah. They don’t need any higher level of support than this when really they needed a lot more support than that.
And the Supreme court, I think it was the state Supreme court ruled in their favor. So again, that child loses out. Those parents had to go through that. I’m guessing terrible [00:06:00] experience of having their life kind of out in the open. And having to advocate so hard for so long that it’s just really disappointing. Right. And it can get really depressing. The other thing that I also wanted to group into this new story thing is that all of the negative experiences come out in social media, in Facebook groups, the same place where we go for support.
Also has a lot of people that are sharing their negative experiences. And while that is good, because they really care, right. People who are sharing those negative experiences. They’re sharing that so that you don’t have the same negative experiences them, right? So that you go into these experiences with your eyes wide open with what can happen in a negative way.
The thing is then a lot of people in those Facebook groups, a lot of people in Instagram, you know, like anywhere that you run into people even talking about in the community, they’re probably not going to share their positive experiences because people [00:07:00] just don’t do that. And we’re humans and we tend to bias towards sharing our negative things. Like that’s just who we are as humanity.
And so I wanted to come on and just give like a percentage, like reality, right? Some IEP meetings. Are really tension field and they’re really terrible. And then some of them are just ho-hum. And then some of them are just this amazing experience of everybody just chipping in. And loving life and loving this kid and loving, interacting with the parent. And it’s just amazing. So everything that I share is trying to get everybody.
to that amazing IEP experience place. But I also have a very honest streak in me that I’m going to say that’s probably not going to happen every time. Especially depending on what you can’t control. Which is the school IEP team. So some IEP meetings are [00:08:00] attention filled controversial.
Almost painful. Right. But in my experience, this is not the majority of meetings. Okay.
And this is also when honesty comes in, because most of the time. When those meetings were negative or felt achy or something was up that made it not collaborative and not amazing. Most of the time there was like a backstory and I’m going to be honest. That sometimes being the OT and being related service provider, I would look around and say what what’s happening. I have no idea, but there’s some kind of history that’s coming into this meeting that there are things that are not resolved.
Between the team
or the parent has had bad experiences in the past, which absolutely happens. And they’re bringing that into the next meeting and then they just keep being tension-filled because nobody can ever hit that reset button. So I want to encourage you if you’ve [00:09:00] had negative experiences in the past, or maybe you’re going through it right now, because.
You know, you can have multiple meetings and you can be in the thick of it right now, too. That it doesn’t have to be like that for every single meeting from here on out. It just, it really doesn’t. You have the power to change that. And we’re going to talk about that.
So I just want to say this before we move forward to that, you can, by being here by listening to this podcast, by searching out resources, even.
You aren’t going to be blind with, with what is happening to your child. So you’ve already been connected to me. You probably are connected to other people who are teaching you about IEP and advocacy in the disability that your child has. If you have a diagnosis. So the likelihood that something is going to happen from now into the future is pretty rare because you’re already a person who is seeking out information to learn more. Right. I understand if that’s happened to you in the [00:10:00] past, you’re saying, oh my gosh, I didn’t realize things were in this state.
And now I’m looking at resources to like, fix it moving forward. That’s amazing. So your eyes are wide open now and moving forward, who I do genuinely worry about is the parents who haven’t really found any support. Or don’t even know what a podcast is to search for podcasts, or don’t even know that there’s people out there writing blogs to help parents with advocacy.
Or they don’t even know about the neurodivergent movement, which happens a lot. And that’s pretty slow to change within the parent community. Sometimes, sometimes it’s not. So that’s who I worry about is the parents who are isolated don’t necessarily know that they have all these resources out there. And that is what’s scary to me because that’s when you can be like, oh,
I didn’t know that a draft IEP was the thing or, oh, I didn’t know that I had the ability to set the tone for the meeting. Like those are the parents [00:11:00] who. Maybe won’t ever really find out about the resources that are out there. And that makes me really, really scared. Right.
So the majority of IEP is, are like these ho-hum meetings. So they’re not terrible. They’re not necessarily tension filled. I can’t speak to how the parents feel about the meetings, right? Because I’m not the parent on the other side of the table. But most of them are like, oh, okay. Like, this is kind of what we did last year. And
this is what we’re going to update the goals too.
And okay, let’s move on. And I just want to say this isn’t necessarily a bad thing, right? This happens when the IEP is generally working, when there’s not huge problems or huge transitions or huge challenges that need to be worked on or. I figured out in a team way.
These are perhaps students who are kind of on a learning trajectory. They’re making progress. They still need that intervention. There’s no question [00:12:00] there, but they’re making progress. They’re pretty happy at school. We’ve got supports figured out,
you might have a lot of these meetings, right. Especially if you have a fairly good team, you’re like, I don’t know what all the hoopla is about. This has been okay. Am I missing something? Should it be terrible? And, and really that’s okay. But some years might be these ho-hum meetings and then some meetings you might have a bigger transition, or a vision statement that’s changed on your end or all of a sudden there’s a support need that popped up that you didn’t realize they had before.
And a lot of times this happens because the demands in school have changed. So very famously. The transition between elementary school into middle school is very hard because those demands change, right? You have one teacher typically, maybe two in elementary school. And so what happens is you have this communication system,
you have this teacher that is their go-to person, that you know, you as the parent only have to communicate with one teacher or maybe two, if they get special education, [00:13:00] right. Well, all of a sudden in middle school, it’s like, oh my gosh, they have seven teachers. Like that’s hard on them. And it’s hard on you to keep track of too and trying to like keep the, the glue of the team together.
So sometimes you might have ho-hum meetings, which are, are fine. And then you might have this big transition and you’re like, oh my gosh. This is very, very hard for them. We need additional supports in order to support them in this setting. Right. So it’s not necessarily that your child changed.
It’s at the demands of the setting changed. And you also might have this kind of shift to when you get to a transition IEP and all of a sudden you’re like, oh, what do they want to do after high school? Oh, okay. Now we have a whole set of expectations that have changed. Maybe through a vision statement or maybe through that transition assessment that they do to like figure out what are possibilities for them.
And so that would change, right? And then all of a sudden you have these ho-hum meetings, that aren’t a big deal. And then they might change to being like, oh man, we’ve got to figure this out [00:14:00] because now we can see the end in mind and we know where we need to go. And we’re seeing that some skills need to be built before we get to the end of high school or before, you know, we get into the next year of middle school or whatever it is
Now about 15 to 20% of meetings, in my opinion, from my experience, remember. Our electric. They are incredible. Everyone is participating. Problems are being solved. We’re throwing out ideas left and right. Some of them are rejected and nobody’s offended by it. And then some of them were like, oh, maybe that would work. People are being creative. And the child is undoubtedly in the center of those meetings.
A lot of these meetings for either K through three. So kindergarten through three or in their first year of middle school or in early on like ninth or 10th grade in high school. And that’s because these are natural changes to the child’s own learning, growth development, and natural support where needs pop up and get figured out.
Now we’ve already talked about these amazing [00:15:00] skills that these parents have, and if you’re listening to this podcast way after it’s being released, Then you might not know what I’m talking about because there was bonus episode that if you’re listening to this right now, you can still access. And that came out last Tuesday. So just so you know, that bonus episode is about the four pillars of parent advocacy and what I saw in patterns of successful parent advocates.
And that is limited time, limited time bonus because it’s a lead into directly what the ultimate parent IEP prep course is based on. Okay. So just know that that’s what I’m referring. But what these parents did to make these amazing, incredible IEP meetings is that they had a vision for their child. They were confident to ask questions. They knew the problems or support needs or challenges
that were happening with their kid and a little bit about why, so that they could articulate that and explain it succinctly to the team. Okay. So that’s basically a very broad, slightly different summary [00:16:00] of them. The last podcast. So, how can you stay focused on your child? Despite all of the negativity out there?
And that’s what we’re going to talk about next. And again, me being the real person that I am, I saw more of these amazing, incredible electric IPS. When the school team actually knew what they were doing. When you had a school team who would actually listen to you? When you had somebody who actually knew what they were doing and very educated about the disability category or the types of needs that your child had. Right.
So just to throw an example out there, there’s a lot of staff members who don’t really know what to do when it comes to executive functioning. So when we’re talking about teaching them self advocacy skills, and when we’re talking about organizing themselves and really kind of understanding what assignments they have in turning them in, those are all executive functioning skills. But the thing is that some teachers understand how to teach that. And then other teachers have no idea [00:17:00] how to teach that because they’ve never been expected to teach it before. And they’re not out there actively seeking information to be able to learn that skill.
So what happens is parents feel like they hit a brick wall because that all of a sudden they can’t control that part.
And this is how you can really turn it. And I’m not saying it’s instant. It takes a lot of work and it might take several years and it might take a team change to be honest, but this is how you help your broader community. So things you can do. I am a huge fan of Stephen Covey’s seven habits of highly effective people. If you read that book.
And you’ve been listening to the podcast for awhile. You will see this throughout the entire podcast. It’s what I kind of live my life by. And one of his habits. Is focusing on your circle of influence. And he has a visual inside this book and I highly recommend it. I read it every single year.
And what it is is it’s this little circle that’s [00:18:00] you? And then kind of layers of circles of bigger and bigger circles. Coming out from you, right? And so let’s take this example of interacting with an article about somebody in a different state. That’s going through this court case.
In which they ruled in their favor, but there’s all this lost time to their learning. So circle of influence says you can only do what you can do. You can’t impact that particular family, you can’t even probably impact that particular state that that person is in. But when you focus on doing what you can do inside that center circle,
And you can do it effectively and you impact and you model this amazing advocacy from the inside and from your nuclear family. Then all of a sudden you actually do more than you focusing on the huge circle. That’s way out there that you can’t have influence on. [00:19:00] So, what you can do is you can become the best IEP advocate that you can be for your child.
You can be informed. You can be prepared.
You can know where to go to ask questions and you can sift through people’s answers. Even if you do go to those Facebook groups and you can sift through the really good answers that are trying to help and be real, but positive and people who are just coming to vent and to layer their experience onto yours.
You can choose to either take that advice or to leave it right.
And here’s your shameless plug. You can absolutely join the prep course. You can find a realistic but positive community there. Right. So shameless plug go join the prep course. And do the coaching part to find your community. But you can also spread the word about good resources you found. This may be the parent IEP lab podcast, but it might be something else. There are some [00:20:00] amazing resources out there that I didn’t even know about until I started interacting with people and being guests on other people’s podcasts and having guests onto my podcast. There’s some amazing stuff out there.
So you can be that positive shift and you can share, and you can tell people about these amazing resources that you’re finding as well.
And so let’s go back to that inner circle then. And let’s talk about what happens when you advocate well within your team for your child.
You are staff that you’re interacting with maybe really blinded by their own little bubble. They might not be even aware of other resources or other ways to do things or that, Hey, they can actually teach your child to self-advocate imagine that. And so they might be needing you to introduce them to this concept, right?
And how I saw this in myself was I didn’t realize that the neuro-diversity movement was out there until about three years ago. And it’s been around for much longer than that. [00:21:00] When I brought it up to the specific autism team, these are people who only interact and only teach autistic individuals have autism certificates, even.
They had never heard of the neuro-diversity movement. They just didn’t know. And so when I brought it up and I was like, Hey, have you heard about this? This is really amazing. These are the recommendations that they’re saying that we should really change when we’re trying to help the kids that we’re helping.
And it was eye opening that people as specialized as they were, were not aware of that. Okay.
Here’s another example of something really cool that happened. There was a special education teacher.
And she was interacting with a pretty amazing parent. And both mom and dad were involved. Like they were, they were amazing. And what happened was when she started thinking about it, she’s like in this elementary school, We have a high needs program. We have an autism specific program. [00:22:00] And we have a little bit of push-in work for people who just need this little support.
But what we don’t have is somebody who needs that moderate level of support. That can push in and be like a co-teaching situation. What happened was they figured out this mod needs program where she would go in and actually co-teach with a general education teacher. And when she started looking. She actually discovered.
But there was five other kids in that classroom that would benefit from her doing a co-teaching program. So it wasn’t just that one kid that was going to benefit it was going to be six kids inside that classroom. And from my experience with being para there’s a lot more kids that benefit from the co-teaching situation inside those classrooms.
So it all starts with one parent bringing it up to get that teacher’s brain firing and saying, oh, I know how to fix this. That’s how you can kind of [00:23:00] jumpstart what they’re thinking about so that you can make a broader impact. And all of a sudden you’re concerned about your kid. You are bringing it to their attention. You’re not making them defensive. But what’s happening is you’re getting their wheels turning and you’re getting them thinking about what they love to do, which is serve kids in the beginning. Right. Hopefully that is still their main passion.
So here’s my advice. Be real. No, that there is a ton of negative situations that happen every single day. And there is a lot of negativity out there in places that should be. Maybe positive, maybe more helpful. I don’t know. But there’s a lot of negativity that gets strewn about without knowing the full story and the full context of what’s going on. These cases are complex. Every time I meet a new parent in
The prep course office hours. It’s like, tell me about your situation because nobody can just tell me their IEP situation in one sentence. It just doesn’t happen like that. It is [00:24:00] absolutely more complex.
But the next time you see something like that, I want you to ask yourself, can I change that situation? And the next question is, what am I doing for my own child? What am I going to take from that situation to make sure that that doesn’t happen for my child and how can I use that to also help the children?
That come behind my child in the system. And am I making lasting change by being an effective parent advocate for my own child? So if you are being the best advocate that you can, if you are educating yourself, if you are being prepared for meetings, if you are getting support from real but positive people.
Then you were doing everything you can to change the system from the inside out. And if you need support in getting to that place where you feel like you can be the best advocate that you can be, and you have the education that you need to be effective and you are prepared for that IEP meeting,
then I want to officially invite you again and again, and again, to consider the ultimate parent IEP [00:25:00] prep course, the doors are open right now for a couple more days, and I’d love to help you build your advocacy skills and make a broader impact for your child, but also influence the team to be better and perhaps even influence your district and maybe even go higher than that.
Let’s see how far you can go. If you want.
And if you’re thinking. I have a Facebook group that I would really love to share this episode in, or I have a friend who could really benefit from hearing this because they get caught down in. Caught up in the negative so often, which is so easy to do by the way. Then just go ahead and share this episode with them inside their group or directly to your friend, or you can just rate and review this podcast. So it gets recommended to parents who are searching for resources.
But haven’t been able to find them yet.
That’s it for this special bonus episode. So click the link below this podcast player to join the prep course. And I cannot wait to see when they’re bye for now.