Standardized testing and educational plans are a reality of life for us as parents of neurodiverse students. But it can be a bit daunting to think about, especially if you’re new to the process. There are forms and meetings and legalities that can overwhelm you if you’re not prepared. And honestly, it’s hard to be prepared for something you don’t know much about. That’s why we’re here to help you.
In today’s episode, we’re sharing how we’ve navigated the individualized education program (IEP) process. We have a lot of trauma and angst around this issue and we want to be very transparent with you all when it comes to expectations for this process.
We also talk about the history of standardized testing, why IEPs are so important for neurodiverse kids, and some strategies you can use to set yourselves up for success.
Remember that your child’s team are experts in their disciplines, but they’re not experts on your children. You are. It’s up to you to advocate for your child and to be persistent when you know that something isn’t working or that your child’s needs aren’t being met. We got your back, friends.
In this episode, you’ll learn...
[07:37] The big picture history on why standardized testing exists and the weight it’s given from a historical context
[11:31] What the focus on assessments has done to classrooms, plus the importance of IEPs and 504s for neurodiverse students
[20:47] Our personal experiences with the IEP process, and why we have compassion for IEP teams
[29:49] Some IEP hacks and resources we’ve used over the years for our own kids
[41:46] Tips and strategies to set yourselves up for success
[49:09] What the What? Recap
[52:04] The Last Word
If you just can't get enough of us, don’t forget to join our newsletter and check out our other projects.
Links mentioned in this episode…
Sir Ken Robinson TED Talk: Do schools kill creativity?
Transcript for "Ep 13: IEP Strategies to Set You and Your Neurodiverse Child Up for Success"
[00:00:05] Gwen If you have an appreciation for honest and sometimes irreverent conversations about parenting and walking alongside humans with neurodiversity, you're in the right place. I'm Gwen.
[00:00:18] Kristen And I'm Kristen. And together, we have decades of experience parenting fiercely amazing neurodiverse humans, as well as teaching, writing, advocating and consulting. All of this has provided us with an endless supply of stories of inspiring failures and heartbreaking wins.
[00:00:35] Gwen Welcome to You Don't Want a Hug, Right? We promise to come at you each episode as our true selves, sharing the hilarity and delight in the midst of the heart of our journeys. Most importantly, though, we hope to remind you of your immense value as a human being outside of the parenting role that you play.
[00:00:56] Kristen So grab a cozy blanket and a beverage and go hide in the closet nearest you.
[00:01:04] Gwen Well, hello, friends. Welcome to the You Don't want to hug Ready podcast.
[00:01:09] Kristen My gosh. What the what.
[00:01:11] Gwen What the what. We hope that you are enjoying us as much as we enjoy ourselves, but.
[00:01:19] Kristen Or maybe half as much.
[00:01:21] Gwen Yeah, that would be a good goal. Just half its fall and which means that it's the best time of year.
[00:01:27] Kristen The literal best.
[00:01:29] Gwen Literal, best. I met somebody once who hates Fall and I decided almost immediately that I could no longer respect them.
[00:01:38] Kristen Well, yeah. You can't be fronts. No. And understand that.
[00:01:42] Gwen No, no tolerance. Sorry if we just alienated you, but you deserve it. Today's not going to be like the funniest episode, right? Because we are talking about something that we both have some jump trauma around.
[00:01:59] Kristen Yeah.
[00:01:59] Gwen Angsty feelings around.
[00:02:01] Kristen We get a little hot, we get a little hot talking about these things.
[00:02:05] Gwen So we are talking about educational plans and standardized testing and, well, I'm getting like a lump in my throat. The whole conversation is going to be different from what you hear elsewhere. We were trying not to talk about things that you can get on other podcasts, so we're going to be sharing some stories and insights from our our journeys and maybe giving a little more history than you might get as to why the systems are set up the way they are. And then we hope to give you some strategies and and hope for your own IEP. 504 Standardized testing journeys. But if we don't get to that, we do apologize in advance.
[00:02:51] Kristen But we'll try again another time.
[00:02:55] Gwen But before we do that, do you have a grand vision for us?
[00:03:00] Kristen I do. It's a it's a hard time for my for my little guy, Graham. My little guy.
[00:03:06] Gwen Is not.
[00:03:06] Kristen Little. Not little.
[00:03:07] Gwen Six two.
[00:03:08] Kristen He's really tall. Yeah. Who just took himself to get a haircut the other day? Rode his bike, paid for it, set up the appointment, all of which was amazing. Amazing. He came home with a homeboy haircut like it is.
[00:03:22] Gwen No hair.
[00:03:23] Kristen Almost no hair. He loves it so much. And I actually think he looks older and very handsome.
[00:03:30] Gwen So I do, too.
[00:03:31] Kristen We're going with that. But just the fact that he she kind of pulled that whole thing off by himself is really, really cool. But he's very anxious right now because he's waiting for a some news which comptroller to come in that he ordered online and he's been tracking it and it's in the post office and it hasn't been delivered yet. So as Gwen well knows what this looks like when our boys are waiting for something, our young men are waiting for something in the mail.
[00:04:00] Gwen That means we are also waiting alongside them.
[00:04:03] Kristen With bated breath like it's really all we can do. And Graham said last night he was like, I think I'm doing pretty well, actually, this time, don't you think? And I was like, You're doing.
[00:04:13] Gwen Amazing with the delivery of item, with the.
[00:04:17] Kristen Waiting of the delivery of that item. So he's heightened in his anxiety right now. There's also been a swarm of yellow jackets that have been making a home on our deck. And my little studio where I record is on the deck. And so we're all terrified of this situation.
[00:04:38] Gwen You should be.
[00:04:39] Kristen Right.
[00:04:40] Gwen Because I was just stung recently and my foot was the size of an elephant and I just got it off my antibiotics. So carry on with the killing of the wasps. Not because.
[00:04:52] Kristen Why wasps? And my husband and one of my children went to town on the nest, caused a mass genocide. There were some survivors. They were really pissed off. They've been building a new nest. And so we finally had to call the exterminator. And Graham was pacing inside the house because he's very afraid of stinging insects for good reason. He also has been stung and had body parts blow up pretty significantly. So he's been pacing back and forth inside the house, wanting me to ask the exterminator when the wasps would perish, how long until they have perished?
[00:05:35] Gwen I hope that you said exactly that to the exterminator. Did you? At least I'll give you the cause of that. I'm not. Did he smile? Yes, he did. The word perish.
[00:05:46] Kristen Well, he was smiling the whole time. It's hard to know.
[00:05:49] Gwen Oh, but it was.
[00:05:52] Kristen Yeah, it was my favorite moment of the day. Oh, could you ask it?
[00:05:56] Gwen Is. It is now my favorite moment of the day.
[00:06:00] Kristen What's your role in as well?
[00:06:01] Gwen I also love that you just had a lengthy grandma ism, and now I'm going to give you a real short one. Woo hoo! This morning I was on the front porch just mentally preparing for recording. As we need to do. We have to be in good mental states to do this, friends, because otherwise you don't want to hear from us. And my kids are off of school today for no reason other than why be at school on a Friday. And I told Rylan that I just need like 30 minutes of quiet so that I can make some notes and just drink my coffee. So he knew he wasn't allowed to come outside. And we also have a puppy who closet doors, you know, when he wants to be let in or wants, you know, in the bathroom, God forbid, and the puppy needs to get in. And so I'm sitting on the porch and I hear this crying at the front door. I'm like, oh, sweet. Dudley wants to come out. So I open the door and bend down to greet Dudley, and I am met with my son's crotch. There he was crying out the door. Because I think he knew that. I would assume it was Dudley and I would come. And then he looked at me with this, like sheepish look, and I said, Were you just clawing at the door? He goes, I don't know what to do, okay? I just. Okay. Can we just move on? Oh, my goodness. We are going to talk about the angsty conversation. But we promise not to make it angsty the whole time because formalized testing, standardized testing, education plans. It's just the reality for every single one of us. But not everybody has an educational plan. And so I really want to just start the episode with just a big picture history on why standardized testing exists and why it's given the weight that it's given from a historical context. So, okay, if I do that.
[00:08:16] Kristen You go.
[00:08:17] Gwen Okay. And I have learned so much about this because I have been so baffled in our journey of education and just don't understand logic of so much of what our kids are expected to do. So I've done a lot of work researching, studying, reading. And one of my gurus was Sir Ken Robinson, who, if you haven't looked at his YouTube TEDTalk, I highly recommend it. It's one of the most viewed of all times. And he passed away suddenly during the pandemic, which was heartbreaking for me. But he's out of England and he is just a mastermind when it comes to what education could look like and not education reform, but more education transformation. And so I've learned an immense amount from him. And he talks about how the. Formal education process now is made up of these three main elements, which is curriculum, teaching and assessment. And back in 2001, when the No Child Left Behind Act was passed by Congress, there was this significant push in government funding for new systems of testing for our public schools. And back in 2011, $800 billion was spent in this new initiative for formalized testing and all of that money. We're not all of it, but a significant chunk of it goes to companies that make and deliver standardized tests. And you can imagine that there's a lot of politics behind that, which is super gross to me, but I'm going to move on. So government really took control of education at that point by setting the standards, specifying curriculum content, and then testing students in these systematic ways to check.
[00:10:22] Kristen On.
[00:10:23] Gwen How many of those standards are sticking. So they tried to make education more efficient with increased accountability. But also competition is a reality of what has come out of that because less value was placed on the art and the drama and the dance and the music, and even on like social studies and geography, those main topics of literacy, math and STEM became the focus. So that direct instruction became really important because those facts and skills for the entire class had to become emphasized, which then pushes out that creativity and the personal expression and discovery and that imaginative play. Even like in preschool, they started pushing those things out. Not saying that, but assessments became crucial to schools ability to get funding.
[00:11:27] Kristen Talk about how that shift and that push to assessments actually looked in the classroom like, what has it done to our classrooms?
[00:11:37] Gwen It took away teachers ability to be creative and to kind of design their own strategies and curriculum design because it became so strict as far as what the students needed to learn based on what was on those tests.
[00:11:56] Kristen So then your teaching, your teaching to the test.
[00:11:59] Gwen You are you're teaching to a test group. Work became more obsolete because they needed these individual kids to be able to take these individual tests that, of course, are all the same. And it's all multiple choice with very few long form answers. And they added so many different tasks, like in Colorado, it's even worse than it is here in Michigan. So there's so many days in the year designated to just these tests. So teachers just lost the ability to be creative. And guess what? Teachers started quitting. And so now it is hard to even find teachers who are willing to teach. It's dramatically become that way because of the shift that was meant to not leave a child behind, but in the process just changed the way that education looks. And it really put the pressure on administrators to make their teachers align with what is providing the funding that schools need to survive. And funding is based on how well you perform on these tests. Right. And guess what? When you're under-resourced and you have a school that's just trying to survive, your kids aren't performing high on academic tests and then you are for it further because you're not getting more funding when really those are the schools that need. So you can see why I go bonkers. Once I learned this, it's so broken and and there's no hope for our teachers and schools to try to do better when they are so bound by standardized tests and the money that comes with them. I need you to take over for a minute because I just need to calm myself down.
[00:13:53] Kristen So many days in the year are sucked up by preparing for the tests, having alternative tests, testing. It's pretty outrageous once you see the schedule. And I think a lot of teachers were really put off by that besides the fact that you could make more like at McDonald's or Chick-Fil-A than you can being a brand new teacher. And in a lot of places in our country, we have such a crisis of a shortage of teachers. So this is a topic that we could talk about literally for days. It's a system and a structure that our families have to live and die by. To get services right. So that's just for your average kid. This is a real challenge. Now, you add on top of that our Neurodiverse family members. And now we have to start looking at IEPs and Final Fours. Or as my friend Martha likes to say, Elemental Peace, because it just feels like an alphabet soup of all kinds of measurements, standards, rules and data. And your teachers need to really understand the process of an IEP or a504. Each document gives you very different things from a legal standpoint. You know, the five of four as part of the ADA, which provides for accommodations but not services. And then your your individualized education program is really about goals and accommodations, and your goals need to be oriented towards how the student is impacted in the school setting. Now, this becomes challenging for our kids with autism and other neurodevelopment disabilities and neurodiversity because it's such a broad need, right? It's there's social communication as a need. They need help with extracurriculars. They need help with more than just the academics. And I think schools are getting better at understanding that broader context. But in some places used to really have to push in order to get your team to look at the larger picture and that helping your student in the lunchroom with a conversation is just as important as something that they're going to be tested on for math.
[00:16:19] Gwen Yes. Thank you for saying that, because you're right. That ties back into everything that we just talked about, because there is a significant gap between what schools are expected to teach and what they're being told is valuable content and what first the economy needs. Like we are not caught up with that, but the lack of that social, emotional, spiritual attention to the students as a whole is just furthering our ability to live in just these unproductive relationships and hostile community settings because our kids, namely, need direct instruction in those areas. But there is literally no space for that in what our schools are being expected to teach.
[00:17:10] Kristen Right.
[00:17:10] Gwen And so I think the conversation of really pushing for an academic plan for learners who those social, emotional, spiritual components are. Life or death sometimes, Right. Our kids need that emphasis. As you just heard in our last episode, how destructive this can be for our population. Namely, there's no room for that. And so and we almost can't expect our schools to be focused on that because they're just trying to focus on getting the funding to stay afloat. So the educational plan becomes such an important tool for us as parents to push for and will not be offered to you in most cases. So I know it wasn't offered to me, but we pushed for it and thank God, because it has saved his academic life.
[00:18:14] Kristen Yeah. I think without it, your child doesn't even have the access to mental health support that they can get with it. Right. So a lot of you know, as I mentioned in the last episode, a lot of all my kids really struggle with mental health and have had real challenges in that area. And school has been a big part of that. And without the IEP, we wouldn't get those direct minutes. With the school psychologist, it would be more our group approach with the social worker and their mental health was such a big part of their need. So these documents become, like you said, like.
[00:18:56] Gwen A lifeline.
[00:18:57] Kristen Potentially a lifeline for families. But I think to Gwen's point, it was really important for her to really lay out some of those foundational pieces so that you understand the environment that our school teams are expected to operate under. And then on top of that, we have to come together over a federally mandated legal document, an IEP, and somehow come together on goals that are achievable, right, that are doable and that are meaningful for our children, and also not setting up the team for something that they can't accomplish. So as a parent, you have to have some level of compassion and understanding for, you know, I know what I want and what I expect. I know what's not going to happen because I can see how how underwater this team is. How can we come up with a creative idea that's not going to blow their doors off and that's not too high of an expectation for the system that we all have to work in. Like they're working in a broken system, too, and they're leaving it by droves. There's there's hardly any of them left, especially special educators. And that speech language pathologists are like unicorns. They're so hard to find. You know, some buildings are sharing a speech pathologist and some are using them via Zoom.
[00:20:30] Gwen Or sharing a school psychologist. Therapist right now.
[00:20:34] Kristen Yeah.
[00:20:35] Gwen Which we are a well funded district. And that just it baffles me. It baffles me. So all this to say parents, namely, we have to be so honest for our kids. And unfortunately, so many of us don't have the capacity to know the legal ins and outs of how this works. And so maybe an advocate is something that you can look into because we really need to know what our kids legal rights are. I know when we started our IEP process, I knew zero. I knew nothing. I just knew, unfortunately, that I was so stressed out by the novels of emails I would get about everything that was going wrong in the first grade with my son that I couldn't handle it anymore. And so I just went to the principal and I said, What can we do? I can't do this anymore. Do you think he needs like, one of those plans is what I said. I didn't know. She goes, Yes, you can put in writing that you want an IEP evaluation. And then legally it is our obligation to do that for you within 60 to 90 days. Well, thank God she said that. So I did that, and that's what started the process. But it stemmed from I couldn't handle the negative feedback that I was getting about my child and I didn't know what else to do. And then we got an IEP.
[00:22:08] Kristen We had IEPs for all three of our kids from preschool until they graduated from high school. So we've never not been in that world. And that amount of years with with multiple kids means that we had a really different experience of education. Right. We've always had teams of people. Some of them have been unbelievably great. Some of them have been really great people who just did not get our kids. And I never met a special educator that was not a a great human being. But sometimes they they've had no training and working with our kids that are on the autism spectrum. And so, you know, there's a lot of trauma and damage that happens with all of those IEP meetings up over all of the years. Even when they're good meetings, they're hard.
[00:23:05] Gwen Even when they're good. You take a nap after. Yeah.
[00:23:09] Kristen Or take the day off. Yeah, I mean.
[00:23:11] Gwen The whole team does.
[00:23:12] Kristen But to your point, just a minute ago, Gwen, that we need to be honest, are expected to know because often you don't get what you don't ask for and you don't know what you don't know. So this is this is a little bit of a conundrum that a lot of us are in, in multiple systems, not just school systems, but how are you supposed to be on it If English is not your first language, how are you supposed to be on it if you're working three jobs? I mean, it's just it's so inaccessible for so many families.
[00:23:48] Gwen And they are often the ones in the schools that don't have the financial support to be giving their their students the quality intervention that they need.
[00:24:00] Kristen Yeah. They don't even know what's going on. No, they can't even they don't have a car. So they can't show up to an IEP meeting because they can't get there. You know, I mean, there's just so many issues with access for families and then, you know, and that's really challenging for teams too, because then they're left without that parent input and they're doing the best that they can. So it's just such a broken system and we'll try not to get too depressed about it. But, you know, I think the pandemic just widened that gap and made it more challenging for our families to have access. But all that to say these documents are a lifesaver in some ways because they do guarantee some level of leverage for families, for for a teen to look at their child and have more individualized approach when we're in a standardized environment. And IEP is supposed to guarantee you an individualized approach. It's in the name. So within the constraints of their budget and their staffing and their knowledge, which was always kind of frustrating to me because I felt like I was always bringing a lot to the table. I always felt like I had to bring a lot to the table, but I've always had teams that were super willing to do whatever to try different things.
[00:25:25] Gwen And I think it's important. On that point, Christen, to note that these educators are so in the weeds of just caring for students every day, their continuing education and their ability to like, know what's happening in academic trends and to learn new resources and new strategies are so limited. But I know for myself, I spent so many years. I mean, I quit my career to better support him, namely at school. I knew so much. I had so many ideas in my toolbox. And I would go into those meetings feeling like, What the hell? How do I know so much more than the people who are hired to do this? And of course, now I understand there are so many reasons for that. And they did so appreciate like, Oh my gosh, that's genius. Oh, can we do oh, can we steal that? But I would leave just defeated, like I couldn't do this job. And it's true. We could as parents do these jobs, but it's because we have to learn so much to survive the journey. So please share what you know with your teams. And don't be an A-hole like I was and just be like, Oh, they know nothing. What are they doing with their time?
[00:26:50] Kristen I know they're working their ever loving asses off with very, very little pay. And then they go from that job to a second job because they can't afford to live off what you pay a teacher. And they spend all their time doing standardized testing and they have very little professional development. They have a really tiny amount of that per year and they have barely any time in which to do it. So they're really put in one of the most impossible situations and it is really hard to watch and care about having been an administrator at a school for many years to watch those teachers who love our kids so much struggle to find a way to support them. And then they are creative, right? But they don't have the bandwidth.
[00:27:43] Gwen They don't have the freedom or the flexibility. So the bottom line is, if you are in a place of privilege where you are learning and growing share, just be an active part of that team. And that will kind of build on our episode on building a team. But they need they need us to be an active voice in those conversations. Patience. And our kids need us too.
[00:28:10] Kristen Yeah. And other families who don't have the privilege to have the mental real estate to be looking into these things. They need us to be educating and then collaborating and working alongside our teams, not fighting with them because. There are the people that love our kids. They're not people to fight with.
[00:28:33] Gwen Yeah. And they're not all going to love our kids. No. That's not going to connect the kids and.
[00:28:39] Kristen Get them.
[00:28:40] Gwen To focus on the ones who do and just bring cookies laced with weed to the ones who don't.
[00:28:48] Kristen I don't really do that.
[00:28:51] Gwen Really do that. Oh, my God. I mean, if there's lead in it, obviously. Well, they might appreciate it. Hey, friends, we know how isolating this journey of walking alongside humans with neurodiversity can be. We don't want to do it alone. And we don't want you to do it alone either.
[00:29:08] Kristen So we've created a space we're calling the communal closet. Since we have been known to spend so much time retreating in our own closets. We thought, why not create one big online closet where we can all retreat together?
[00:29:21] Gwen We've packed the space with resources, conversation, opportunities to interact with us and each other and unicorns. That poop fidgets.
[00:29:30] Kristen For $10 a month. You can become part of this community and also contribute towards the creation and sustainability of this podcast. We all love.
[00:29:38] Gwen Visit. You don't want to hunker down and hop right in. We promise you'll be so glad you did. I can remember our first IEP meeting. You know, you walk into a room and there's like 83 people there around the table. Yeah. And you? Yeah. And early on, like, your kid's not there typically. And so you show up to the meeting and don't bring your spouse because you're like, I don't know. It's probably not a big deal. And then you feel like hiding under the table because they're all there talking about your kid. And I remember feeling like this isn't right. This doesn't feel right, but okay, this is what we're going to do. And the first paragraph of the paperwork is Rylan's strength, right? And I was like, Oh, thank God. We're here to talk about his strengths. Oh, what Drew that conversation was 30 seconds, and then the rest of it was deficit based. And that experience was horrible. It was horrible. And we walked out with an autistic IEP. He was not diagnosed autistic medically at that point. So the fact that we got that was extraordinary, because that's the only IEP that gives you every single service under the sun. So push for that. Friends. You don't need a medical diagnosis of autism to have an autistic IEP. If you think that your kid is anywhere on that spectrum, go for that. Because then they get the O.T. and they get the PTA and they get the social worker and they get the language and.
[00:31:19] Kristen Well, and they are also the goals are going to be oriented towards social communication, and it's called an educational identification. And so when you're working on an IEP, they have to determine what the educational ID is. It could be other health impairment, it could be an intellectual disability. And so what you want is for it to be autism spectrum disorder as the educational identification, then you have access to a certain kind of goal, a certain kind of professional on the team. So yeah, it is really important.
[00:31:55] Gwen They wanted or I said, Well, we don't mention Tourette's, but they did it on purpose because the autism provided so much more than the Tourette's diagnosis did. So we would incorporate like tic accommodations in there without naming that Tourette's syndrome. So luckily, I did have some amazing administrators who could pull me aside and say, This is what you want. She even said, we're putting a behavioral plan in place because this as long as that's in place, you can't get expelled from school. He didn't keep that very long because he really has never had the behaviors. But at least in those early years when he was like licking the toilet and hitting kids in line because he didn't want to be touched. He couldn't get in trouble for those things because he had that behavioral plan. So that's another element to try to consider, too.
[00:32:50] Kristen Yeah, Graham had a behavior plan all the way through just because he did have some bigger behaviors. And I mean, a child could still be suspended for those behaviors. But if they're related to the disability, then it requires a manifestation hearing. And so then they would have to if they couldn't expel him, they'd have to place him somewhere else with that had a higher level of care. And that's a really I mean, the district gets involved. That's a really big process. But yes, it is very protective to have a behavior plan because more than likely they weren't following the behavior plan. Right. Their behavior. And so it kind of protects you.
[00:33:30] Gwen But you have to be honored to know that.
[00:33:32] Kristen Right. Right.
[00:33:34] Gwen Yeah. I will say, like the autistic IEP made it so that I could lead every IEP meeting, which eventually I hired an advocate because the district showed up then and I had all attention and they were very like positive, not hostile at all meetings, but the having that advocate there made a huge difference. Like they just sit up straighter. If you have an advocate and I just got so tired of having to be Rylan's voice and that was such a relief to me to have somebody show up in that role and I could just kind of sit there and smile and bring cookies.
[00:34:14] Kristen The Advocate can ask the questions and kind of take on that more adversarial role and kind of save your relationship with the team. There are some free advocacy services through ARC and most I think every state has an arc and every county has an arc. But it's an organization that provides a lot of support and services, and they do have for like a $25 membership fee. You can have an advocate service for free to come to your IEP meetings.
[00:34:46] Gwen Yeah, there's so many resources like that out their friends based on what state you live. So don't assume that this is just all out of pocket stuff that you have to do. Those resources are there, especially if you have a child on the spectrum. Go to your autism society or branch local to you. But having that autistic IEP, I would lead every single meeting with I don't care right now about his academics. And this is not going to be the case for every family. We do not care about his academic goals. He was one that we knew he was listening and taking in the information. So in that way we can start with we want his goals to be social and emotional. And that way we knew that they were attending to those to those aspects of his learning. He needed to learn how to be in the school building with his peers, and that was the only thing we cared about through like fourth or fifth grade. And I remember his team being like, how we've never heard a parent say that, but that makes so much sense. So we didn't get kickback on that. Of course, he still did his academics, but I said, I don't want homework. We're not doing homework. Put that in his IEP. We always dead. Homework was detrimental to him. I want a note taker for him. Like I want to relieve the academic stress 100% for both U.S., his teachers and for him as a student. If he can learn how to be in class and not walk up and grab the teacher's arm every 30 seconds, I want that as a goal for the year. And I will say now we have his triennial coming up next week, which every three years they reset and redo the IEP, redo the testing and evaluations, how many hours of I spent doing paperwork. I mean, it's so ridiculous. I just started writing. See other form? See other form. But his school therapist, he has a great team, came out and talked to me the other day in the parking lot. He said This should be an easy IEP, like pretty quick for a try. And I said, Actually, I think this is going to be trickier because for the first time we want academic goals. On his IEP. He's doing great socially, emotionally at school, but and he's showing that he can go to college. And we got a focus on college readiness now. And you could see he was like, Oh my gosh, you're right. And he he agreed. But I think they just assume, like we're just going to keep going with this IEP and his goals. And I'm having to completely mind shift now because I want this kid to go to college. But academically, because we haven't been focused on that, he can't write a paper, he can't take notes, he can't research. Like these are all things we haven't focused on and now we have to start focusing on them. So it just never stops.
[00:37:56] Kristen Yeah, yeah. It's a it's a tough you bring up a really good point when it comes to the IEP, especially as you get up into this transition. IEP is where you may have been hammering away for years on academic goals. And then at the transition IEP, the question becomes, is this kid going to be on the life skills track or an academic track? And sometimes teams have not had that conversation until the transition IEP, which is like 14, 15 years old. And families are thrown back into a grief cycle if they've been picturing their student having a full time job or going to college. And now we're talking about they might be in like a day treatment with a group or they're going to be in transition services after 18. When you thought they were going to go to college. It's a really difficult thing and I think if I can give anybody advice, it would be to be having those conversations. Young Like late. Elementary, definitely by middle school, be having those conversations on what what track are we on? Which do we think we're on so that you can start really researching and putting yourself into one of those tracks so the other doesn't put you there forever. But if your school team all along, then like this kid's not going to college and they have not had that conversation. Oof, it's tough.
[00:39:25] Gwen Yeah, and to make room for your kid to be changing and growing and maturing as puberty hits.
[00:39:31] Kristen Yeah.
[00:39:32] Gwen Because it's all been so amazing and good and surprising for us. The things that he is doing now, we just didn't assume he would do, and I don't think we said he wouldn't do them. But it wasn't assumed. We don't assume our kids are going to follow these like typical trajectories, but he's driving and he's working successfully and he's killing it academically as far as the standards they have set up for him. But we weren't ready for all these things. So we're trying to like catch up mentally and emotionally to the fact that he is doing these things now and completely shift our mindset to one of like, Oh my God, he needs to write a paper, what he eats, What? Seriously, He can't write a paper. But I thought pretty hard so that he didn't have to write papers. And now I'm like, Good way to go. Way to set him up for college failure.
[00:40:33] Kristen Oh, my goodness.
[00:40:34] Gwen It's. It's impossible to know what our kids are going to need. But if as long as we have voices of people who have gone before us, like Kristen has been, that for me, like my high school, I can't even think that far. And you really can't when you're in the can't. But you can't. But if you have people speaking into it, that's that's one of our hopes with this podcast is we just want to give you a voice of what's to come so that you don't feel as blindsided as we have all along. So if we can do that for you.
[00:41:07] Kristen We're super grateful. Yeah. Yeah. We're here for you. If you have questions, if you want to call in, if you want to email and this is something that is ongoing in our lives and in the lives of other families that we love and and support. So it's important. It's a it's a marathon. It really is. And things shift and change. And and I think when you said it really well, like you think you're on a track and then you're like, Oh God, did I just mess it up for life? Now we just have to pivot seven Pivot.
[00:41:40] Gwen Nothing before we shift into what the what. Perhaps we can just offer a few tips or strategies to our listeners on how to set themselves up for success. For we didn't even talk about like the standardized testing. I mean, real simply, guys, we opted out of every single one of them. And Silver Island was in high school. Anything we go right to do that. And it's your legal right for them to give your child something productive to do at school during those testing days. Yeah. So don't let him tell you that he has to come home. I had Rylan go and volunteer with his second grade teacher who loved him in his classroom for those days. And it was beautiful. So awesome. Think outside of the box. You can opt out. It's your choice.
[00:42:31] Kristen Yeah. Unless there's a really, really good reason. Opt out and don't feel bad about it. And don't let them send your kid home. Very good. Very good.
[00:42:43] Gwen Tips. Yeah, there's one to another. Tip is like we've talked about like self-soothing strategies. You've got to do that before you walk into these meetings. Friends, it feels like it's you against the entire world. It's not. They're all well intentioned, but the way these meetings are structured, it is so much I'm not telling you, just spike your drink in your coffee mug, but I'm also not telling you not to. Not to. But in all seriousness, you've got to go and sit in there in a good state, like prep yourself emotionally before you walk in.
[00:43:27] Kristen Yeah, I think that's more important. Even then, my other tip was going to be just to make sure that you have enough time to review the document because our teams are under so much pressure and struggling. Often you get the IEP draft the day before the IEP, and that's just not enough time to even really understand or have have the time to think creatively really about, Well, I don't like this goal, but I don't know what to say to how to change it.
[00:43:56] Gwen But it is your legal right to have that before the meeting, so make sure you have that before you walk in. If you don't cancel the meeting.
[00:44:05] Kristen Yeah. And if you don't have enough time in the meeting, schedule Another meeting?
[00:44:10] Gwen Yeah. These are all your rights. Yeah.
[00:44:12] Kristen You have the right to keep scheduling meetings until the document is where it needs to be. Make sure the team is focused on what is the best approach for your child or to your child. Right. So you know, your you are the expert on on your kid. They're the expert on education or whatever their discipline is, but they're not an expert on your kid. You are. So you have a lot to offer. You should be a full working member of the team, not just somebody there that is receiving information. You should be able to make suggestions on the goals. So if you see a goal, that doesn't make sense. Tell them that it doesn't really make sense. And it isn't it isn't a priority. Right? So you could say, hey, like when did these academic things are not a priority. He's not going anywhere in life if he can't stand to be around his peers. And same for Graham like and many, many students that I know personally. If you can't tolerate waiting, if you can't tolerate being near other people, you are not going anywhere. After school, you are going to.
[00:45:21] Gwen Open your basement.
[00:45:23] Kristen That's right.
[00:45:24] Gwen With video games, right.
[00:45:25] Kristen These are the essential skills that you really there's actually a curriculum called Essentials for Living. It's really great. You can ask your teams about it, but it really focuses on those core skills. And if you can't tolerate your peers learning how to write your name should not be the primary goal.
[00:45:47] Gwen And if you have time leading up, like have goals in mind that you want to see for your child and then spend time digging into what are some strategies that are realistic to meet those goals that he could be doing or she or they could be doing at school? Because sometimes our ideas are what will make it on to that document because they appreciate parent input and they appreciate that innovative thinking. It kind of saves them from having to come up with these strategies because they have 23 kids in mind in their classrooms or their caseload in mind. So these are things, again, like we said before, bring those to the table and have them incorporated into the document. So like Rylan doing crosswalk with the principal in the morning, that was something they wouldn't have come up with. But it was beautiful and it worked. It worked wonders for his mornings or we had him go in early before everybody came in, and he would sharpen pencils for all the teachers. So he would go from classroom to classroom and just sharpen their pencils. And that set him up for such success because he missed that man. Rush. Yeah, he was motivated. He had a job. He would earn stickers. So these are the things that we can bring to the table.
[00:47:07] Kristen Yeah. Graham had early passing periods, so he left 2 minutes before the bell rang so that he could be at his next class. That was a game changer because otherwise he was hitting people. I would wish it wasn't always. And the other thing was, you know, when he was able to accomplish, you know, some of the things that were harder for him, he was able to have lunch with the janitor or the resource officer, which were two of his favorite people in the building. So, you know, just just being creative about how we're motivating our kids and we are going to stop talking because we could talk about this for literal days.
[00:47:48] Gwen There's one more that I want to mention that was so grief triggering for me that I just need to comment on. And it's the language in the IEP or the Final Four document. Guys, this language is standardized. It is like insert number here, insert word here. Do not let the language of those documents dictate your child. It is not even how the team sees your child. It is not an accurate depiction. It is a legal document that they need to fill in. It is incredibly detrimental and it's oh, it's just not positive. And if it was how we were described in the world, we would all just never get out of bed. So please know, before you get that language, because they will not typically call you to go over it verbally and make you feel better. That document will not make you feel better. So just arm yourself before you read it.
[00:48:57] Kristen Bubble up people.
[00:48:58] Gwen Bubble and bubble your child up. Literally put them in a bubble.
[00:49:05] Kristen All right. Let's go to what is the what's.
[00:49:11] Gwen Okay. I'm. I'm exhausted. How about you?
[00:49:14] Kristen Yeah. I feel like I need a nap, and it's only 1030 in the morning.
[00:49:19] Gwen All right, well, let's just do a quick what the. What the those ladies say and wrap up the plethora of things that we said in a more succinct manner.
[00:49:30] Kristen Sounds good. So the first thing we want you to remember is that educational systems are defined by standardized testing, and that can really limit our teachers ability to be creative and limit our learners abilities to grow socially, emotionally and spiritually.
[00:49:49] Gwen Number two is that IEP use and Final Fours can be as central for our Neurodiverse kids because they're legally binding and they give families a seat at the table in determining what direction the goals will be developed.
[00:50:05] Kristen Lastly, we want to remember that being intentional and creative about strategies that could work for your child will be essential to bring to the table to assist the team and be a working member of the team.
[00:50:18] Gwen Yes, ma'am. Guys, we're going to hand it over to our kids and we're not going to ask them to talk about five, of course, their IEPs. So be delighted by whatever it is they choose to share with you today. Okay. See you next time. We know all of our needs, but they don't know everything. We think that you deserve to hear from the real experts. Their kids.
[00:50:40] Rylan Will boo.
[00:50:42] Gwen We believe in nothing about us without us. So here it is. The last word. All right. I'm here with Rylan. I saw. Right.
[00:50:53] Rylan Hi.
[00:50:54] Gwen We are doing a wrapping up this series on school, and I wondered if you could share with us two or three teachers or principals from your past or your present who you think have just done a really good job, like meeting you where you're at, supporting you.
[00:51:12] Rylan The first person to talk about what the problem is is stray from your first school. She's just kind of been my support helper. She helped me through Pokemon Club.
[00:51:29] Gwen We'll talk more about that.
[00:51:30] Rylan Basically a club where everyone comes to her. All mostly my friends. They and then we like, do cards, suits and other events and that sort of thing.
[00:51:45] Gwen And she's the teacher representative that you need, so she's supporting you. In organizing that club with you?
[00:51:52] Rylan Yes.
[00:51:53] Gwen Great. What else does she do for you at school?
[00:51:55] Rylan She helps me, like, get my work done. So let's the take tests on her.
[00:52:03] Gwen Okay. How do you find out? Like, calming to be able to have that support in place?
[00:52:10] Rylan Yeah, I guess so.
[00:52:11] Gwen Is an important for you? Yeah. Okay. What's another teacher that you can remember in the past?
[00:52:19] Rylan Basically even a subscriber in middle school. Listen to it.
[00:52:23] Gwen Mr. Vander Woods.
[00:52:25] Rylan Yeah.
[00:52:26] Gwen What did you like about her?
[00:52:27] Rylan She always like, let me come into her room in the morning and stuff, and she just would help me in any way possible.
[00:52:38] Gwen What kind of stuff would she have in her room for you?
[00:52:42] Rylan Like a few years, she had gay cakes. So that was fun. Yeah.
[00:52:50] Gwen Could you take guinea pig breaks whenever you needed a break?
[00:52:53] Rylan Yeah.
[00:52:55] Gwen Because, like animals. What are the animals do for you?
[00:52:58] Rylan Helps me, like, focus and, like, call later.
[00:53:02] Gwen Yeah, I agree. What else would Mrs. Vander would do.
[00:53:07] Rylan A thing like, help me in class. Let me take tests. Hmm. Yeah.
[00:53:16] Gwen Was she, like, super kind?
[00:53:20] Rylan Yeah.
[00:53:21] Gwen Could you tell that she really loved her job?
[00:53:24] Rylan Yeah.
[00:53:24] Gwen You kind of had, like, a little community in her room, right? Of other kids that you would see a lot. Yeah. Kind of created that little family for you at school.
[00:53:34] Rylan Yeah.
[00:53:35] Gwen Awesome. Those are two great examples. Thanks, Ryan.
[00:53:41] Hayden Hi, Mama.
[00:53:42] Kristen How's it going, buddy?
[00:53:44] Hayden It's going great. How about you?
[00:53:46] Kristen Pretty good. I haven't seen you in a while. You're at the college, so it's good to see your face.
[00:53:50] Hayden It's yours.
[00:53:51] Kristen Gwen and I talked a lot today about IEPs and how helpful they are for our families and how frustrating they are and how hard the school system has to work within for a lot of our neurodiverse families.
[00:54:08] Hayden This year. We're no strangers to IPOs in this house on trade.
[00:54:13] Kristen So a question I have for you is what teachers had the biggest impact on you in this challenging school environment? Who really made a difference for you and why?
[00:54:24] Hayden So there's been a couple over the years, and I'd have to say my top three are my elementary school teacher, Mr.. Mr. Randi, teacher in middle school, and then Mrs. Geller and my case manager in high school. Ms.. Vanilla.
[00:54:39] Kristen All those are all amazing people. Tell me what it is about them that made such an impact on you.
[00:54:47] Hayden Well, first of all, Mr. Randi, who in elementary school, he was a very science oriented teacher and he was very laid back, used fun, and he had an alternate teaching style, in my opinion, that it. It resonated with them more. And while it still wasn't easy by any means, I felt she wasn't just a standard teacher, if that makes sense. And in middle school, when I had Mr. Miller, she was very kind, very understanding and very patient. And those are similar three things that helped me the most, because that was a very tough time for me. And I need the compassion and the patience.
[00:55:31] Gwen Because it was harder.
[00:55:32] Kristen For you. I remember you really struggling with kind of rigid thinking, and she needed a lot of patience to kind of break through with you on some some ideas.
[00:55:42] Hayden A lot of things. Yeah. Yeah. And in high school, my case manager, Miss Manalo. She was wonderful. I was still not the easiest to work with in high school, but she had patience, persistence, and she also I really feel she understood kind of how my brain works and she was able to play those strengths.
[00:56:07] Kristen Oh, that's so cool to think about. It sounds like what they all had in common was they were inspirational and they got you that got the way you worked.
[00:56:18] Hayden Yes, better than most. And that's huge in a public school environment.
[00:56:23] Kristen Yeah. What was the hardest thing about public school, do you think? So learning.
[00:56:28] Hayden Well, as somebody who has ADHD, it was always hard to stay focused and the environment was often distracting. And I was an avid daydreamer and it was so easy to not pay attention in these big classrooms where there's so much going on, so much noise. Teachers busy harping on the class clown to shut up. So I kind of often would slip under the radar and wouldn't be focusing much and just kind of doing my own thing. So that was always self-reflective. But for me, it was the hardest.
[00:57:03] Kristen Sounds like hard for you to stay present in that kind of setting.
[00:57:08] Hayden Exactly. Especially when there's nothing there keeping me present.
[00:57:12] Gwen Say a little bit more about that.
[00:57:14] Hayden Well, most teachers weren't engaging it with a big classroom. There was a lot of kids. It wasn't very focused. So I would go on to our classes without saying anything, rather just looking out the window or drawing or reading or whatever, because they mean they just didn't have the resources to make sure every single kid was pinpoint focused on what they were saying and what they were doing.
[00:57:42] Kristen Yeah, that makes sense. Hard to engage everybody.
[00:57:46] Hayden Exactly. Especially someone like me.
[00:57:48] Kristen Yeah. Who needs to know why? For everything, right?
[00:57:52] Hayden Needs to be, like, actually engaged. To be engaged? I mean, if that makes sense.
[00:57:57] Kristen Yeah, it.
[00:57:58] Hayden Does. I get bored easily.
[00:58:00] Kristen So thanks for sharing Hades.
[00:58:02] Hayden Of course. Thanks for asking.
[00:58:04] Gwen Thanks for joining us for this episode. We appreciate you so very much. We'd sure love it if you'd subscribe to our show and your favorite podcast app and write us, preferably with five stars.
[00:58:17] Kristen We love hearing from our listeners. So visit our website to reach out via email or through our voice mailbox. You can sign up for our free newsletter. Better yet, join our communal closet where you can grow in community with us and each other.
[00:58:32] Gwen Get on in there by visiting. Youdontwanttohug.com. See you next time.
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