S7 Ep6 Transcription

Season 7 Ep 6
•• Please note that this is a computer generated transcript and there are potential errors.

Understanding IEPs with Catherine Whitcher, M.Ed

Catherine Whitcher

Intro: [00:00:00] Welcome to the Dear NICU Mama podcast. Our mission is to connect the past and the present NICU mom by bringing them out of isolation and into a sisterhood of women who can stand alongside each other as we heal and grow both in and out of the NICU. Our hope is that through interviews with trauma informed medical and maternal mental health experts and vulnerable stories from NICU Mamas themselves, That you would feel connected to the dear NICU mama sisterhood around the world. So whether your NICU journey was 50 years ago, or whether you find yourself in the NICU today, we hope that this podcast reminds you that you are not alone.

Martha: Hi friends and welcome back to the Dear NICU Mama podcast. It's your host Martha and

Ashley: Ashley.

Martha: Ashley. Today I am just really bathing in [00:01:00] the dulcet ish tones of your voice because I can't see your beloved face right now and that makes me sad because you're

Ashley: it's still frozen. You are not frozen for me, so I don't

Martha: which is totally fine. I'm just sad because you, um, your hair always looks on point and mine does not.

Martha: So

Ashley: No.

Martha: the wrong person is frozen.

Ashley: No, you're rocking that messy bun

Martha: You know what it looks like? I feel like I look like Chris from NSYNC in the early days. Do you guys remember Chris? He was the one with like the, he had dreads and the pineapple hairstyle. Google it afterwards.

Ashley: Um, I'm just grateful that you didn't refer to yourself as Danny DeVito.

Martha: No, well, I look like him too. You know, we're the same height, same, same girth.

Ashley: never seen the correlation.

Martha: Well, um, on that note of self love, I suppose, I just want to check and see how you're doing today, friend.

Ashley: Doing great. It's, uh, what comf er.

Martha: Oh, yeah. Conference seasons.[00:02:00] 

Ashley: Yeah, so the daycare and school is closed for two days this week, so it's a little bit of a short week, but I'm excited for some quality time, and you have a really fun week up and coming.

Martha: Yes. We're going on a big trip with my family. I'm very excited to get out a little bit, although the colors are just starting to change here. So when we come back, it will be fall, fall, and then maybe like two weeks till winter. So.

Ashley: Yeah, unfortunately.

Martha: Yes, TBD. Um, well, speaking of the school year and conference season, , now that we're a few weeks into school for many of us in, , North America and the United States, we thought it might be wonderful to talk About ieps and this concept as we know for some not all of the NICU community There's sometimes an overlap of moving on to school and above and needing additional supports in school So we thought today we'd have a discussion with an iep expert.

Martha: So we have [00:03:00] katherine richer from Master IEP coach here. Thank you so much for being here. We so appreciate it. And also thank you for being willing to reschedule, um, our lives as moms, our cuckoo could choose. So we appreciate you.

Catherine: Oh, I'm so excited for the conversation today. And yeah, welcome to nothing going as planned ever.

Martha: Yeah, right. Yes. This is the only lesson of parenthood is you are not in control. Yes.

Ashley: Yes, for sure. Well, Katherine, you came highly recommended from a couple of people, one being a child life specialist. We reached out to her and was like, do you have anybody that specializes in this? And she immediately recommended you. And it was very evident based on just your website and your experience and your social media that you were highly educated in this topic.

Ashley: And so we are so thrilled to have you here today. So could we start a little bit by having you share your background and how you ended up becoming a special education expert?

Catherine: Sure. I would love to. [00:04:00] So, um, I want to just encourage everybody in the NICU community who is listening, like we're going to keep this, , just simple and uplifting. And I want to talk about all the hope and possibilities. , for your children as they become students. And as we move forward, that's one of the big foundations.

Catherine: So, you know, I have a long history in the disability community. My brother is 46 years old with down syndrome. So I grew up a special needs sibling. I watched my parents navigate the system and it was difficult. And there was, you know, I could. On with all the stories of what it just felt like as a sibling to watch my mom struggle to get my brother the education that he needs.

Catherine: You know, it's very similar when you're working in the medical community, right? So you guys are negotiating for your kids to get all the things that they need, and it's. You know, you're like, how come people don't understand? And how come, like, we just can't do what's best and how come it just can't be easier than this?

Catherine: So in my 10 year old brain, [00:05:00] I thought, well, I'll just become a teacher and solve all the special education problems from the inside of my classroom. Like this will work, this will be great. So I went all in and I got a bachelor's degree and a master's degree and I go into the system and I was like. Oh, oh, this is why it's hard.

Catherine: There's all these different, you know, um, kind of hoops to jump through as an educator and my heart as a sibling was breaking. Cause I'm like, I know what I want to do for my students, but. It's not that easy. And it wasn't that the job itself, I'm not talking about the job itself. Like, yeah, being a teacher is difficult.

Catherine: It's, you know, it's challenging just like any other new job or something that you're going to, to learn for the first time. And, you know, running a classroom, but there was another layer. There was another layer of like, okay, I know what could be done, but it's hard to get there as an educator. So, you know, I was actually teaching by day and then I started coaching parents at night and I was like, Listen, [00:06:00] if you talk to my boss and say these things, then you can get what you need for your child.

Catherine: But I can't ask for that. And by the way, if you tell my boss that I told you these things, I'm gonna have to deny it. And so it was just stuff that you weren't allowed to do. And I can say that now because, you know, we, here we are 25 years later and it's okay. Like I can, I can spill all the goods about all the things.

Catherine: And so what happened is parents started to get things. My boss came to me and said, Hey, is this true? Like the, like, we need these things in the classroom for this child. And I'm like, yes. And so then we collaborated together. Well, that parent told another parent, told another parent, and I ended up.

Catherine: Teaching for a few years, but full time then working for parents, helping to build IEPs collaboratively because I never wanted to throw a teacher under the bus because I was that teacher at one point and I want that to happen. So what's interesting is that Typically it's [00:07:00] parents versus schools, and a lot of parents will, you know, feel that when they start to do some research of what is what's out there and what happens.

Catherine: And so it's important to know that there's, there's a way to do this together. And as I started coaching parents and going to IEP meetings with them and teaching them all the things, a couple of schools reached out to me and said, Hey, you were just at an IEP meeting and we love how you built the IEP with the team.

Catherine: Can you actually come train our teachers? And I was like, yes, I'm all in for that. So I'm in a unique position where I get to work with schools and with parents. I'm building IEPs that work in the real world. And that's where master IP coach came from. So master IP coach is a training program for parents, teachers, admins, and therapists to work and learn together.

Catherine: So that's where I'm at now in my career. It was this long journey,

Martha: cool.

Catherine: uh, and you know, we still have a lot of work to do. There's a lot of things that are, again. possible and hopeful. And yeah, there's a lot of red tape, but we can get through that.[00:08:00] 

Ashley: Yeah.

Martha: I love that. I love that you've charted your own course to kind of like build a business that has never existed before and a resource for all these institutions. I love that it's like a real 360 degree view. too. Um, because it's the only way that change can happen is like holistically and entirely.

Martha: So that's so awesome. Thank you for doing what you do.

Catherine: Oh, I love it. I can't, um, I can't leave things undone. And I feel like this is the work that needs to get done is bringing parents and teachers together and, you know, working through this system that truly can work for a child when you know, some creative solutions to make that happen.

Ashley: Mm hmm. Absolutely. And our listeners can't see you, but I wish they could, because if they could see your energy right now, they would see the passion that you have for this work, which is really, really inspiring and really fun to watch.

Martha: Yeah. 

Martha: So for our listeners who might not be familiar, could [00:09:00] you explain what an IEP is? Because I, I heard of an IEP, but until we started prepping these questions, I was like, I didn't even know what the E was. So, there you go.

Catherine: I love it. So IEP is an individualized education program. So basically what happens is when a child has deficits or they haven't met their milestones that we would expect them to meet as they're coming into the school system. There's an entire law called Idea Law. An idea law says that every child gets a free and appropriate public education, and I'm gonna expand on that.

Catherine: Uh, in just a minute of what the IEP is, but in kind of back it up to this ideal law, because it's really important to understand this foundation of idea law. But basically this law said, okay, listen, everybody gets to go to school. So in 1975, they said, everybody gets to go to school. Here's this law and to implement this law, we need a lot of [00:10:00] paperwork on each individual child.

Catherine: And that's where this individualized education program came from. So basically you get this tailor designed individualized program that is, you know, per child. So everybody has their own in special education, and there's a lot of moving pieces within that document. If you know what an IEP is and you're like, yeah, yeah, I know.

Catherine: I got that. Let me teach you something about ideal law that most people don't know. So, um, Free and appropriate public education, which we say the word FAPE, so F A P E for short, every child gets FAPE. And that's usually where the conflict comes in, in special education, because what I think is appropriate for my children is different than what you think is appropriate for your child, which is different than what the school thinks is appropriate.

Catherine: So then you end up with like, you know, I want, or my child needs, or this is what is appropriate or not appropriate. But there's a second. Phrasing to that statement in the purpose of ideal law, a free and [00:11:00] appropriate public education to meet a child's unique needs and prepare them for further education, employment and independent living, which sounds very scary and far away, especially for our tiny ones where we're just like, okay, we have, you know, we've got young kindergartners or young preschoolers and we're like, okay, like these are just, you know, yeah.

Catherine: People that are like the parents, they're not ready to talk about further education, employment, independent living. Your child may not even have an IEP later on down the road. Like we don't know, we can't predict that. But the reason I bring that up for every parent, no matter if your child's two and a half, and you're kind of starting to talk to the school because they can start receiving services at three or, you know, if we're talking, you know, those early elementary years is because.

Catherine: I want you to know that nobody should be telling you that an IEP or special education is to make your child like the other children or that they keep up with the other children. And nowhere in [00:12:00] there does it say that, you know, an IEP is to help a child reach all the exact same academic milestones or the exact same, you know, social emotional, , milestones at the exact same time.

Catherine: Like we're closing the gap all the time. It's really to meet a child's unique needs, which means that we can tailor our focus within this document to really support a child where they need it most so they can access their education. And that's what we want for your child. We want to make sure that we're using this law and we're using this paperwork to design something that says, okay, let's look at where we're at.

Catherine: In all these different domains. So those are different areas that we look at. Social, emotional, academic, behavioral, communication. So we look at all these different domains and we say where are we at? And what are we moving towards and what are the most important things that make sense, not just short term, but also long term.

Catherine: And that's how we really narrow down what we put into the IEP is that we pick the [00:13:00] highest priority things that we need to work on. So that's the, that's the overarching view of that IEP. And I love when parents kind of. wrap their brain around like, okay, so this paperwork's not scary. There's a lot of data, a lot of jargon, a lot of things that are happening.

Catherine: But really this paperwork is meant to wrap around your child's school day and make sure that they're getting what they 

Catherine: need. 

Ashley: mm hmm, right? Hmm.

Martha: That's so crazy too. I mean, I feel like it's so funny that, , we have this whole practice and there's industry and like education for teachers surrounding this concept from one federal, um, . Law or regulation, right? I think that's super interesting and, , like to your point because of your experience with your family and your brother, you must have seen how this change and evolved over many, many decades too which I'm sure has been fascinating.

Catherine: So there's a couple of things in there that I'll, I'll, I'll kind of pick out that. Um, so teachers do not get the education that they need around them. So your listeners, so everybody's listening [00:14:00] here. What you just learned about idea law, most teachers never 

Catherine: learn. 

Ashley: Mm

Catherine: It's kind of like, let's pause and think on that part.

Catherine: Like, like I just gave you information, so then when you go to the school and you're like, Okay, you know, this lady told me this is what we're supposed to be doing. And they're like, Mmm, I don't know about that. And they really don't. So again, I have a bachelor's degree and a master's degree, and I had one class about the law.

Catherine: And it did not teach me like what I just taught there. It did not teach me that part that came from looking for creative solutions. So my brain is always looking for the way around the no and how do we get to where we need to go and get to a yes when it comes to supporting a child and to do that. That.

Catherine: that required a lot of digging. And this piece that seems very basic. Uh, that is a piece that is not taught very often. So I want everybody to know that piece and then how far we've evolved. Unfortunately, we really haven't evolved a [00:15:00] whole lot. So one of the things like you'll see on my social media or you'll see out on the website is I'll say, let's stop building IEPs for the 1980s

Ashley: hmm.

Catherine: because That's when I went to school.

Catherine: That's when my brother went to school. We went to school in the 80s and IEPs I'm not kidding you I could pull up my brothers from the 80s and I could pull out Majority of the IEPs that I still see today and they're very very similar and I'm like, come on like Are you going to Target and paying with pennies?

Catherine: Are you counting pennies for financial literacy? Probably not. So we need to evolve our, our thought process in that. So, that kind of sounds like a, like a struggle. Like, oh, like that's so hard and why hasn't it moved forward and the system's so archaic. Uh, I don't like history, which means I'm going to give you a 30 second history lesson.

Catherine: Just so parents can kind of see. When I say teachers aren't getting this education, I know that that's still true today. It's not just me. Back when I got, you know, my degrees, but I trained teachers. In fact, in the last couple of years I've worked with over, I've probably spoke on stages to over [00:16:00] 10, 000 teachers and the same thing that I just taught here, I teach to them and I get a line afterwards of people coming up to me saying like, I didn't know.

Catherine: Like nobody told me those kind of things because here's what happened. And I'm going to, you know, I already told you I went to school in the eighties. I already told you my brother's 46. So I guess I've already kind of

Ashley: hmm.

Catherine: how old I am. Okay. So when special education was started in 1975, which was 48 years ago.

Catherine: Okay. Sounds like a long time ago. Not really. So 48 years ago, we didn't have teacher training programs. for special education. The law came in and I'm not kidding you. I've met some of them, the librarian, the lunch lady, the janitor, the people who enjoyed working with children who learn differently. They became teachers because they were the ones.

Catherine: So that's how we kind of got the whole like. Well, kids who are in special education, let's put them all together and put them over here with somebody who's willing to teach them. That's how it started. So that's the 70s. Okay, so let's pretend that person is like 24, 25 [00:17:00] years old, right? And they're like, yes, like I'm in the system.

Catherine: I'm go for it. Okay, great. So now I got educated in the 90s. My first teaching degree, oh my goodness, cough, cough, was 1996. Okay, so 1996. So we talk, we're talking 20 years later. So now those people are 45 years old. Guess what? They're my boss. I went into this whole system and the first generation of teachers.

Catherine: Were my boss. So they got a lot of no's in the beginning, you know, just as we would expect, you know, no, we can't do that. You know, no, we can't make that happen. No. So they were trained under no, no, we don't do that here. So then they were my boss and I'm new and I'm like, Hey, can we do this? And they're like, no.

Catherine: And that's that red tape that I was talking about for it. They're like, no, no, we can't do that. And I'm like, but there's gotta be a way. So now my age, we're now the boss. In special education, you know, I'm, I'm the age of, of your average administrator in the school. That's making it things I [00:18:00] was trained originally by the original people.

Catherine: Like, do you see how we're not that far

Ashley: Mm hmm. 

Catherine: We're not that far away. So my hope is in this next generation of teachers that thank goodness have Google. And they've got all the things because we didn't have all of that. And now they're connected and they're learning like, wait, this state does that, wait, this district does that, wait, this is possible.

Catherine: And they're learning all of these different things. And this collective knowledge of what is possible is going to bring the biggest change in special education, I believe in the next decade. So for all of our, you know, families who are like, Oh, this is special education. Like this is hard. And I heard that you might be learning that from a parent who is, you know, had, let's say 10 years of experience, but yet there was a shift happening in special education now where teachers are like, wait, we can do things differently.

Ashley: Absolutely. Well, and what I kind of get a sense, too, of when you talk about it is [00:19:00] that even how we, um, because I think any time that our child needs extra assistance, there's a little bit of shame involved, right? Because as a parent, you feel as though you should be able to make up for that lack, right?

Ashley: And you just want your kids brilliance to be acknowledged by everybody. And so what I hear you also saying is that just the discussion in general of what an IEP is, what it means to need a little bit of extra assistance, is just talked about in such a kinder, more gentler light. And even how you talked about it initially of like, we're gonna, you, you just seem excited about it, which makes me feel excited about it.

Ashley: Like, I'm like, okay, this isn't like this. You know, negative, uh, check mark on my son's brilliance or my child's brilliance. Like, this is just an opportunity for them to learn in a way that helps them and assists them to meet their goals. And so I know this isn't on our questions, but I do want to touch on that a little bit because as NICU parents especially, Our child's medical charts from day one are kind of, um, quote, labeled, right?

Ashley: [00:20:00] We're constantly getting labels for our children, whether it's a diagnosis or a medical term. And so sometimes when we go into school and our child needs another label on their chart, we can feel incredibly triggered and overwhelmed.

Ashley: And that shame, that guilt comes back into play. And so I wonder what you would say to moms today who maybe are suspecting that their child needs an IEP. Maybe their teacher has brought up that conversation and their first gut feeling is shame. How would you talk to them as if this was like their first discussion about IEPs and what this role can play in their child's development?

Catherine: So a lot of times when a parent is feeling that grief. Or shame when they hear this, it's because they're picturing special education in the experience that they have had in the past. So the, so you're picturing the kids down at the end of the hall, you know, maybe the door was slamming, maybe the kids were made fun of on the playground.

Catherine: Maybe they were isolated, even inside of the general [00:21:00] education classroom. So I always ask like, You know what? What is happening? What is going on? So I encourage, you know, the moms who are like, talk to each other about that, about your experience in the past. Like, why does special education feel so scary for you?

Catherine: Because we can do things to make sure that your child does not have that experience that you're picturing that's negative. So that's the first thing. The second thing is to really understand that there are completely two different worlds when it comes to education and medical. So it's important for parents to understand that a school cannot diagnose your child.

Catherine: A school has several categories of eligibility for special education. So think of it like 13 buckets that are laid out, okay? And each of these buckets has a different criteria and basically your child gets looked at and evaluated, which you're used to, um, in that. But we're kind of checking off boxes and whichever box or bucket gets filled, [00:22:00] gets filled first, that's gonna be your eligibility category.

Catherine: All that is doing is the legal paperwork to say your child. qualifies for special 

Catherine: education. And that means that they qualify for an individualized education program. Okay. So they're going to qualify for this IEP. It's not a diagnosis that's going to stay with them. It's not a diagnosis that anybody has to, um, stay with them as an, and the outside world, like it doesn't, it doesn't follow them around.

Catherine: Cause a lot of times there's a stigma in that too, like, Oh, once they get an IEP or they're going to be labeled the. the kid in special education with that. It's like, no, it's literally the law says. I need to give, if I'm a teacher or an IEP team, I need to give your child an eligibility category. I have to label the needs in a bucket so I can start delivering services.

Catherine: Now, no matter what category you have, you have access [00:23:00] to the entire IEP process. So a lot of times there's this argument and it has to do with parent grief or parent experience where they're like, well, you just labeled my child, you know, with a learning disability, but they don't really have a learning disability.

Catherine: They have, you know, auditory processing, which is, you know, and they, they want to kind of, um, differentiate the same way you would do in a medical world to a doctor and say, like, No, we need to look specifically at this diagnosis and what comes with that. You know, we can't just, you know, jumble everything together.

Catherine: We're special education. Things are a little bit more jumbled. In fact, we have a category that, um, many times when I've worked with families who, um, have experienced the NICU, that they go under a category called OHI, other health impaired, which is kind of a catchall of just. We've got a lot of things that we don't really need to label it.

Catherine: We just have some health things that are happening. Or there is a category that is often called developmental disabilities, and that's meant for the [00:24:00] younger students who. And if you think about it, it sounds a little scary, but you're like developmental, okay, and disabilities, okay, so we're talking about special education and disabilities.

Catherine: Again, we're not diagnosing your child with a disability. That's just our education term that we use. And we're saying there's some developmental milestones that haven't been met. Okay, so we just take it at the surface level of it's just... paperwork. In fact, when my mom was going through the system with my brother, I was that nosy older sister who, like I listened to all the conversations around the corner as my mom was like on the phone, you know, pacing the kitchen and we were working on what we, my mom, my mom was getting my brother into a different school, into a different program.

Catherine: And they said, well, If we're going to put your son over there, then he would have to qualify under. And there was this whole big discussion. And basically what they were saying is we need to make that the paperwork would say that your son is [00:25:00] not as intelligent as he is. And I won't get into the labels because they're really old fashioned labels that were used.

Catherine: Um, you know, but we have to say that. My mom said, you put whatever you want on that paperwork. I don't care because nobody's going to see it. I just need my son to go to that school because I know that that's where he's going to get the help. So just put whatever you want on 

Catherine: there because nobody was going to, that was whatever, just whatever.

Catherine: Sometimes in this process of this, of talking about it and this grief and this scariness and this shame, you need to remember, especially in the school system, It's just paperwork. It's okay.

Ashley: mhmm. Yeah.

Martha: I love the way of thinking about it, and I appreciate you differentiating between medical diagnosis and this too. I don't think I had thought about it in that way, um, but it's, it's can be really helpful too because there's already so much that we need to navigate as well. So if we can kind of maybe detach is the right word, but kind of, um, appropriately, [00:26:00] uh, compartmentalized, like you said, this is paperwork.

Martha: This is so that my child can get the best education that they deserve. That is, free and appropriate. Thank you. I did. Right. Then we, um, then that is the ultimate goal. Uh, and that actually brings up another question too, which is you've kind of identified maybe when folks, parents are, are a little disconcerted by the idea of their child having an IEP.

Martha: But what about if it's the reverse? Maybe you see your child and especially, you know, I'm a parent of a new kindergartner, right? So this is the first time they're engaging in the public school system. Um, when we think that they might benefit from having an IEP, how do you start those conversations? Where should parents begin in that situation?

Catherine: So always start with conversations with your teacher to understand if your concerns are also being seen at school, but understand that your conversations with the teacher actually do not start any [00:27:00] evaluation process. Like, don't be afraid to talk to teachers, talk to staff. Hey, are you seeing this? I'm concerned.

Catherine: Um, you know, we did a play date at the park. There's other kindergartners there and I'm seeing this big gap. Are you seeing this in the classroom? So really starting to gather at least some basic observational data from the teacher is really important. Now, if you straight out, no, you're like, I know my child's going to need some extra help.

Catherine: Like I'm seeing the papers come home and you know, whatever it's winter or it's Spring and you're like, you haven't really seen the improvement. You like, you just your parent gut, like listen to it. I'm sure you guys tell people that all the time, like you've gotta listen to the parent gut. If you're just like, I know, okay, there's, you have to ask with a formal letter.

Catherine: There's a formal process that you have to take now. It's not. It's not a scary like this legal jargon letter. It's just that you have to make all requests in writing. We have the saying in special education, of course, that says, um, if it's not in writing, it didn't happen. [00:28:00] So if you did not submit your request.

Catherine: for your child to be evaluated for special education services in writing to both the teacher and to some admin. And I say to some admin because every school district just works differently and that. So let's just say a building principal, a special ed director, you know, somebody higher up that their job is to shuffle all the paperwork that comes through.

Catherine: So you have got to ask for that. That's actually one of the things that, you know, a lot of people will hire a master IEP coach. So just kind of on a side note, I don't work with families one on one anymore. So my calendar got filled doing what I do. And people said, can you teach me to do what you do? And I said, no, for a really long time.

Catherine: And then finally I was like, okay, yes, like, like I'm going to teach some people to do things this way. So now when somebody says, can I work with you? I actually have a searchable directory of master IP coaches that I've trained and they're independent practitioners, um, who are master IP coaches. So they've gotten the training through me, but then they work one on one with parents and a lot of times parents are [00:29:00] coming and saying, like, I don't even know what to put in this letter.

Catherine: Like, I need to make sure, like, can you help me write this letter so then I can submit it to the school and get this. started. So you don't have to figure all of this out by yourself. You know, we have resources for you. There's a lot of resources out there. Uh, so you can figure that out. Now the school might say, no, we're not going to evaluate because we don't see problems.

Catherine: The thing is you have to get the no in writing exactly what don't you see in the school day? Like, I want to know, like, so you're telling me my child's like, right there with everybody else. Like we are right, right where we need to be. The other thing is that an IEP is not just for academics. So that's important as people are having, you know, their parent gut instinct is like, you know, when we're talking about social, emotional behavior, communication, all of those things are definitely covered under ideal law.

Catherine: So if it's, you know, your child knows their ABCs, but they are struggling with relationships, having meltdowns, you know, maybe even the teachers removing them from the class. And things like [00:30:00] that happen even at the kindergarten age where it's just like, you know, there's 25 kids. There's one teacher.

Catherine: Child's having a meltdown. We don't know what to do. That's not always, uh, you know, as somebody might say, a behavior problem that could be a lack of development or emotional maturity. And we need some supports in that area to ensure the child can access their classroom without having these, you know, meltdowns and crying and those kind of things.

Catherine: There's a lot of different ways to look at this. Um, but to get that started, make sure it's in writing and make sure you're having clear communication and don't ever assume that if you verbally said anything that it actually occurred. You gotta, you gotta put that in writing.

Ashley: For sure. Well, and not to go backwards, but could you just maybe share a little bit of You know, what would be some maybe hints that maybe a child could benefit from an IEP?

Catherine: Yeah. So basically if your child is sad, okay, I'm just going to talk like for, for our little ones that are, you know, when you're under the age of seven. [00:31:00] Regardless of, of all the medical things or things that have happened, like you shouldn't be sad about your school day. It shouldn't be sad. Something's happening.

Catherine: Something's not, you know, so, so are you sad because the academics are too hard? Are you sad because peer relationships aren't happening? Are you sad because you're overwhelmed with the pace of the classroom? And, and you, you just can't keep up. Um, so you could do it, but you just can't keep up. So there's a lot of things.

Catherine: So when a child's sad, that's a, that's a big thing. When you're seeing some negative reports from the teacher, you know, not meeting the benchmarks, the guidelines, the standards that are put forth by that school district. That's definitely something to look out for. Again, I'm just gonna go back to the play date.

Catherine: If you're noticing that you've taken your child to a play date with their, you know what we'll call typically developing peers, right of just that they, they don't have a medical history and we've got a six year old and a six year old and a six year old, right? And it's kind of like, like they're all, everybody's going to be different and unique.

Catherine: Uh, completely acknowledge that. But if you start [00:32:00] to see like, this is, this is different. We need supports to keep up on the playground. We need supports to facilitate this friendship. We need supports. And if you're starting to do those supports in your unstructured activities, You know, going out to the grocery store, going to your play dates, going to do those things.

Catherine: Most likely those things are happening at school also. And those kind of things are not always noticed by a teacher right away, which is why I say having a conversation is good to start that. But, um, you know, following up with a more direct request is often needed. So just, just really looking at, at this age, it is kind of.

Catherine: easy to compare because moms are still talking to each other. Playgrounds are filled. It's really for our older kids where you're like, I don't know if this is like normal for a preteen, like middle school is tough, like middle school kids, like it's awkward, right? They're like, I don't know what's normal, what's not normal, what's average, what's not average.

Catherine: Like, you know, we just have these like, I don't know. And like, forget the [00:33:00] teenage years. I'm like, I just, you know, my, my girls are 20 and 21. So I just got out of the teenage years. And, but I mean, I was like, I don't know, like, dude, is this, this is 15 year old girl life. I don't know. I don't remember. Um, this, so, you know, just really at this younger age, um, follow your instincts and it's better to be that person that might have to ask, you know, ask and then ask again and then ask again.

Catherine: Yeah. A lot of times what we hear from schools is something like, we don't see that here or it's not that bad kind of thing. When you hear stuff like that, ask them to start taking data or can you please have a weekly check in? You know, do something to monitor to make sure that your child doesn't fall through the cracks.

Martha: I, I think you've done such a great job of already sharing some tips on advocacy, right? Like, I think, um, understanding where schools are coming from, understanding the communication via writing is really helpful. Um, what other kind of tools and [00:34:00] tips Would you suggest or even resources that parents could use to kind of educate themselves and prepare themselves?

Martha: Particularly I'm thinking too. There's like this holy trinity of child school and then also doctor I think i've already experienced that a little bit Oh, we need this Signature from this doctor and your doctor needs to do this and then the teacher asks for more things that type of thing with My daughter and some of her stuff

Catherine: Oh, this is where I want to dig in and I go, really? Because guess what? Schools can't ask for anything from the doctors when it comes to that stuff. There's not signal.

Martha: We'll circle back on it later, I

Catherine: talk later. We'll talk later about that. You know, so when I said the medical diagnosis is different than the educational eligibility, notice a medical diagnosis, educational eligibility.

Catherine: I really do truly mean that as in you can have a medical diagnosis and never qualify for an IEP. You can have an IEP and never have a medical diagnosis.

Ashley: Mhm. 

Catherine: So you don't have, they don't go together at all [00:35:00] 

Martha: Mm. 

Catherine: qualifying for services. The only time that it's still like a doctor can't write a script, some doctors think they can, but you can't write a script for an IEP.

Catherine: Like Johnny needs an IEP. Like the school is chuckling behind the scenes like no, that's not how it works like nice try doctor And so like it's the only time that there's really There's two times that there's kind of communication between doctors in school one is that There are severe, significant health issues.

Catherine: So, um, I've worked with a lot of families that have a lot of complications. So we're doing things like modified school days, modified placements, modified things. And the child has a diagnosis that is not understood by the school. So we might have a doctor call in to say some or write a letter to say something like, this is how.

Catherine: child. So for example, pa don't know if you're, you of [00:36:00] that, but that's reall an autoimmune thing. It c it causes brain inflammat there's a lot of struggles are not visible. It's very invisible it becomes very visible like through behaviors or

Martha: Mm hmm.

Catherine: To perform and do those kind of things. So sometimes we need a doctor to kind of step in and say, listen, this is legit.

Catherine: The child has this. So when you're seeing these symptoms, this is this. So maybe for a further explanation. Now mind you, that doctor can't say therefore you need to give him. like this type of I. E. P. I'm not saying that like so they're there for information purposes only. The other thing that a doctor might be involved in, um, or might have the school be involved in or such as like, let's just say that there's a child that they're got the medic on the medical side.

Catherine: You're looking for. Um, does my child have ADHD and then that practitioner might say, can you send this survey to the school for the teacher to fill this out [00:37:00] type of thing? Because you know, the practitioner wants to know what your child's doing at school. So there might be some exchange of information.

Catherine: And I do say just like Like you said, okay, they can fill out this. I never, ever, ever recommend that you give permission for any medical practitioner to talk to the school without you. So a lot of people will sign a release and say, Oh yeah, like my, my child's psychologist can talk to, you know, the school or psychiatrist and I'm like, no, no.

Catherine: Like, you don't need a bunch of teachers or admin or anybody else just to have random access to your child's medical stuff. Like, that's not appropriate. If they need something, they can filter it through you and then you can bring it back to them, um, to do that. So, there really shouldn't be that, um, back and forth.

Catherine: So, it's, it's really, instead of, it, It's almost like instead of thinking of it like a triangle, there really isn't. It's like family at the center and like doctors on the left and teachers on the right. And it really should be [00:38:00] this linear kind of, if teachers need something from doctors, they go through family.

Catherine: If doctors need to know something from school, they go through family.

Ashley: Mhm. 

Martha: super helpful to, to know. I mean, like you said, I just feel like we don't have, um, a societal context or, like, full understanding of this. in a lot of ways. Um, so it seems like then the best way that a parent can be an advocate is by uh, being present and being available but also kind of like really educating themselves and understanding what the limits are of these things, right?

Martha: Because I, I may have inadvertently gone through this process and not had, not had known, right? That I, it could have been different, right? So how do you encourage those parents to, to figure it out?

Catherine: Get a mentor. And that's what we do in Master IP Coach. That's one of the reasons, like when we talk about like, I, you know, I, I was really focused on developing something that wasn't there before. So every state has a free advocacy. Avenue. Okay, so you can always look at [00:39:00] that again. It's by the state.

Catherine: The schools are run by the state. And it's a free agency. Okay. So you're not always going to get all of the layers that you may need as a, um, as a parent or that you want as a parent, you're going to want other layers of information. You're going to want to, you know, know other people have been there and done that.

Catherine: So getting basic information, I say, absolutely just get it straight from your state because man, those Facebook groups don't do it. Don't do it. Just don't do it. Okay. You might go in there to read some things. Um, then get out. You can always join later if you want to. Cut it out. But you'll see people say like, don't sign the IEP if you don't agree.

Catherine: And you're like, okay, but my school didn't ask me to sign my IEP. It's like, once you signed your child into special education, okay, everybody in all states, If their child's going to get special education, you sign a piece of paper that says, [00:40:00] yes, I agree that my child will receive services. After that, every state has their own rule about signing the annual IEP.

Catherine: So IEP has to be reviewed at least once a year. Um, so you'll have an annual review date, but that is something that, um, you know, your state. agency for free advocacy that's run by the state. Okay. Funded by the state, they will be able to tell you like, does an IEP need to be signed or not signed? So like, those are things like you have to be really aware of, you know, number one, go get all the free stuff that you can.

Catherine: I mean, I even, I've got free resources on masteripcoach. com. You can go get some free resources, go get all the free stuff. Okay. Bottom line is you're busy. And one of these days you'd like to drink your coffee while 

Catherine: it's 

Ashley: Mhm. Mhm.

Catherine: So that being said, that's where the master IP coach directory is at. Or if you choose another mentor, just get, get somebody around you that has been there and done that.

Catherine: And it's had a positive outcome. Oh, stay away from the negative Nelly community. Okay. Don't don't do it. So [00:41:00] just go where somebody said, you know what I've navigated this and first this and then that and now we're here and it's good. And then you're going to have to navigate it again because your child grows, schools change, teachers change, things change.

Catherine: So you're constantly, you're constantly working towards it. I think parents are always looking for, give me all the information so I can just know it. And this is just one of those things. That there's never a, I know it all. I've been doing this for over 25 years, and I will never tell you that I know everything about special education.

Catherine: I know a lot, and I know where to find the stuff that I don't know that'll come my way. But I'll never say that I know it all. Because there's always going to be something else that comes up, and that's how it is as a parent. You can take in all the information, but my goodness, don't stuff yourself with it to the point that you're uncomfortable and worried and stressed out.

Catherine: Get enough information. So you're satisfied. Like, okay, I got this. And then you talk to people. Like you said, you get a mentor, you get a coach, you get somebody that says, okay, [00:42:00] you've got this. This is what we need to do next. And then you know what? It's okay to move on and have your life and revisit it next week.

Catherine: Um, with that, because sometimes when people start to look at all the resources, all the things, and who do I need to get and what do I need to do? It becomes all life consuming of all school becomes like the end all and be all. And if anything, once you've been through the medical system with your child, you realize life is so much more precious and so much more important than a seven hour school day.

Catherine: And yes, that's a huge part of your child's life. And we want to make sure it is as fantastic as possible. But it's a part of your child's life. It's not the end all be all. So I'm all about let's put it all together and make it the best school experience possible. And I'll teach you all the ins and outs and how the law works and what's going on.

Catherine: And, and, you know, you can come through programs, you can hire coaches, you can do all of that. And the reason I provide all that support is because I do want every child to be prepared for their further education, [00:43:00] their employment, their independent living. But I also want families to have a life outside of school.

Catherine: I'm obsessed with IEPs, so you don't have to

Ashley: Yeah, I love that.

Martha: Yeah.

Ashley: I love that. Well, would you mind sharing a success story of maybe a NICU graduate who has thrived in school thanks to the support of a well crafted IEP, like we've talked about?

Catherine: Absolutely. So I had a friend who, and I had no experience. Um, with a baby had gone through the NICU unit in the past before my friend who I went to high school with and we ended up reconnecting because of her baby. So, you know, I, I see on Facebook that she's literally holding her baby in the palm of her

Ashley: mm hmm. Mm, mm 

Catherine: and I am like, Oh my goodness.

Catherine: And I'm, you know, I'm just kind of watching her journey and she reaches out and she's a former teacher. And she tells me, you know what? I know, I know I'm going to have to navigate this and [00:44:00] I, I don't even know what to ask for. Like I'm so far removed, even though I have the education background, like there's, there's just no

Ashley: Mm hmm. Mm 

Catherine: there's just no way.

Catherine: Okay. So. kind of stayed with her through those early years. She does her early intervention services at two and a half. You start talking to the school because at age three, the school takes over the services, you know, not the early intervention anymore, um, in there and, you know, really helping her.

Catherine: communicate what was important for her daughter was the key because a school wants to swoop in and again, kind of like level the playing field as in like, okay, so here's all the deficits and here's all the things we can do. And we're like, whoa, whoa, hold up. Like, listen, here's the deal. Uh, we are still working on feeding therapy and this is not something that we even want.

Catherine: Like if you try to work on this at school and one of your providers puts this in my child's mouth and she chokes. And [00:45:00] this is going to be an issue. So like, this is not where you come up with the plan. This is where I come up with the plan. That might be one of those situations where we'd say the outside providers, like we need the feeding therapists who understand like the, the high level, highly experienced feeding therapist to understand that, you know, to help the school understand this is not just like food aversion of, you know, they don't like the texture.

Catherine: That's not what this is. This is something else.

Ashley: Mm-hmm. 

Catherine: so just really that communication and making sure that her daughter was always seen for who she is first and what did she need to thrive in the environment in a way where Her daughter was happy and she didn't feel pushed aside. She didn't feel like she was rushing to keep up all the time.

Catherine: She didn't feel like that. Now, the thing is this family, um, then my friend, she had another baby soon after that they're only, I think, um, I don't know, 13, 14 months apart. Okay. So she has her [00:46:00] son and she made the decision to, um, hold her daughter back one year and have her Children go to school together.

Catherine: They were in a small school. It made sense. And that's not always something that I recommend that siblings are together. I was not together with my brother. I don't know if I would have wanted to be just because, you know, he had his needs and I have, you know, I had my needs in that way for this family.

Catherine: This worked. And that's just an example. If you've got to do what's right for your family and that he did decide to hold her child back. She had that option that where the school did not give her a ton of pushback. Anybody who's listening is like, that sounds like a great idea. Um, it's not always that easy.

Catherine: Okay. There's a whole strategy in it. In some, in some places. Um, to make that happen, but for her, that extra year of just, um, you know, getting kind of acquainted with what was expected of her on top of trying to keep up with everything on top of all of that. So her IEPs were very, [00:47:00] um, we're very. Detailed but not overloaded.

Catherine: So that's what was really important. And I find that with a lot of our, and I'm gonna say like medically complex families, we need them very detailed, but detailed doesn't mean overcomplicated. You can have simplified, detailed. effective. This is what my child needs type of things. So now that I'm still watching on Facebook, she has now since moved across the country, you know, her daughter has her driver's license now.

Catherine: Uh, you see her in her, in her, uh, you know, in her dresses going to like homecoming dances and doing all of the things. Um, you know, one time, I think a few years ago, She texted me and was like, okay, listen, I got a teacher that won't listen to me. Give me the right words to say X, Y, Z, whatever it was. And I was like, okay, and I'm like, say it this way.

Catherine: And then I don't hear it from her. I'm like, okay, so it worked. Um, you know, that's why I say it's an ever evolving process of communication [00:48:00] and individualizing things. But yeah, I worked closely with her in the beginning and now I don't like ever hear from her and that's a good 

Ashley: Yeah. Hour. 

Catherine: but I'm really getting in there.

Ashley: Oh, that's incredible.

Martha: awesome. I love that story. And I, I love too that it, um, it shows too, like this is a, like you said, this is a part of their lives, but school and the school day is really, um, This one element of your kids like as they grow as we're learning their activities, and then they have friendships and Romantic relationships God help us all you know all these different elements of how who they're what their identity is and how they succeed As a human so I do love thinking about it.

Martha: You know in in the context of that that girl that she Obviously was able to IEP and is now thriving in a lot of ways in a lot of different parts Of 

Martha: her life, 

Ashley: Mm-hmm.

Martha: that's awesome

Ashley: Yeah.

Catherine: That's our goal. We've, you know, ABCs and one, two, [00:49:00] threes are great, but life's not all about that. We, we have to develop us as a whole person.

Ashley: There's the Instagram quote. There's always a quote that sticks out.

Martha: Yeah.

Ashley: That's the Instagram quote.

Ashley: Oh man, well, you've done such a wonderful job throughout this episode of making what can feel like a really overwhelming topic really comprehensive, and, , we're so grateful for that. So maybe as kind of an ending note, what encouragement or hope would you offer NICU families who, who might be navigating this new world of education for their kids?

Ashley: And, how would you encourage them today?

Catherine: Yeah. So I shared a lot of different things, like, you know, this is the structure of the law, these are different ways to advocate. Here's all, you know, the pieces, the moving pieces, medical, educational. Here's the bottom line when it comes to special education. Everything is fixable. You're not going to make a mistake that's going to impact your child long term in a negative [00:50:00] way.

Catherine: And a lot of times we put pressure on ourselves as parents to get it right. Let's do all the research and get it right so we don't have to do it again. You're going to have to do it again. Your child's going to grow. They're going to change. The school system is ever evolving your expectations for your child and what needs to happen in this stage of their life.

Catherine: That's going to change. Everything is going to change. What you thought was great before is going to feel wrong. Sometimes, you know, sometimes like six months later, you're like, Oh, I think we need another meeting. Like this is not working. I don't think that this is working. That's okay. So it's important for you to understand as you start to navigate all of this, as you're doing all the research, as you're bringing together the law and your personal values and the uniqueness of your child and the way all of this works, just know you're going to make mistakes and all of it is fixable.

Ashley: I love that. Well, Catherine, you are a wealth of knowledge, [00:51:00] which We completely expected, but we're always blown away by, , the guests we get to have on here. And so thank you so much for, again, making a very overwhelming topic feel obtainable for those of us who don't have that special education background or master's degree.

Ashley: And thank you for the work that you do to empower families. in this season of their lives, 

Ashley: And for any of our NICU families listening here today that are feeling overwhelmed or anxious about one more avenue to track their child's milestone or its development. we want to remind you that you and your child are right on time, that you are not behind, that they are wonders, that they are miraculous, and that, , you are right on time for where both you and your baby need to be.

Ashley: And so we love you all, we will be back next week with another episode, but we hope this episode here today empowers you to make the best decisions for your family. We'll catch you back next week.

Outro: Thank you so much for listening to this week's episode of the Dear [00:52:00] NICU Mama Podcast. If you loved this episode, we'd be so grateful for a review on any of the podcast platforms. And we'd love to continue connecting with you via our social media pages or a private Facebook group. And ultimately, NICU Mama, welcome to the sisterhood.