Hello and welcome to another episode of Rad Mom Radio!
This week my guest is Anastascia, a local wife, mom, and college counselor. Anastascia has two sons, her youngest, Caleb, is a senior in high school and is diagnosed with Angelman Syndrome. In this episode we talked all about Angelman Syndrome, Anastascia's experience as Caleb's parent advocate in the school system, and what an inclusive classroom should be.
Thank you so much for listening!
Hello and welcome to another episode of Rad Mom Radio!
This week my guest is Anastascia, a local wife, mom, and college counselor. Anastascia has two sons, her youngest, Caleb, is a senior in high school and is diagnosed with Angelman Syndrome. In this episode we talked all about Angelman Syndrome, Anastascia's experience as Caleb's parent advocate in the school system, and what an inclusive classroom should be.
Thank you so much for listening!
Hello and welcome to rad mom radio a podcast dedicated to moms and all their favorite topics My name is natalie and i'm your host Hello and welcome back to rad mom radio, thank you for joining me for another episode I hope that you're having a great week so far. It's almost the end of summer. I think our last 100 degree day here in Fresno is Thursday. Fingers crossed. Super exciting. So that means it's fall. I mean, sorry. Sorry, not sorry. It's fall. I haven't had my first pumpkin spice latte yet. I know a lot of you have. I don't know what I'm waiting for exactly, but I'm still excited, you know, that everyone's enjoying them, so. I have a great episode to share with you this week. I got to interview a local mom named Stacy. Stacey has two sons. One is college age and one is a senior in high school. Her youngest, Caleb, is a senior in high school this year. And Caleb is diagnosed with Angelman Syndrome. So you'll get to hear all about that and what Angelman Syndrome is, what it looks like, how it impacts a person. And Stacey is very knowledgeable and experienced in advocacy, like school based advocacy, so we talked a lot about that. We talked a lot about Stacey's experience in advocating for Caleb in the school system, just what that's been like for her as a mom. Different challenges she has come across. We also talked about kind of, you know, her beliefs about what a classroom should look like, how it should support its students with special needs. So this was a really good informative episode. I really enjoyed my conversation with Stacy. So thank you so much for joining me this week. Big thank you to Stacey for your time and just for coming on and chatting with me. This is my interview with Stacey. Hi Stacey. Welcome to Rad Mom Radio. Hi Natalie. Nice to have you here with me today. Thank you for inviting me. Yeah, definitely. You know, we haven't really gotten a chance to get to know each other, but I do know that you're a local mom with, you know, a lot of experience in advocacy in the school system, and you have a child with disabilities. So, I really, you know, was interested in having you come on to chat. Before we get started with, like, what we're gonna talk about today, I have a thing for icebreaker questions. I love, like, knowing little random things about people. And I was just kind of looking at your Facebook, and there's, you know, I like to... To come up with questions that are specific to the person. And there were a few things that really stood out to me about what you post online. One of those is just the men in your life. So you have two sons, right? Yes. Okay. Yes, I do. And then your husband. And so I was just, it just looks like you guys are like super close and tight knit. It looks like your sons are very close. And I just really, I thought that was really sweet. I think there was some kind of like montage you had of your sons together, like in pictures over the years. And it was super cute. So yeah. So what I wanted to ask you was like, what is something that is remarkable or special to you about each of the men in your life? Okay. So, I mean, I did have the questions ahead of time. So I really was thinking about this. And this is going to be an odd answer, but reality is they all make me laugh. So they, it is interesting how they each have this sense of humor. And I think with our lives, it is so important to be able to laugh. And yes, people who know my son's nonverbal and are listening to the beginning of this. Are going to wonder how does that happen? But Caleb's facial expressions are just out of control sometimes. Driving with him, if I'm like driving faster or I hit my brake, I mean I get that look from him. You know, basically, Mom, what the F are you doing? Like, you know, and then he's watching me drive because he's not sure what's going on. So that's how I, I can see his humor in that. And just through his facial expressions. Both my husband and my older son, Ryan, are just constantly, it is like non stop. We are constantly laughing in our house. And I think I'm the brunt of a lot of their, their jokes and stuff because I'm the only girl in the house. But, that's, I think that is the remarkable thing about the three of them. They just always, I'm always laughing. My son was just, my older one was just here visiting. And I mean, I think I laughed the entire week he was here. It was so funny. So that is, that is, yeah. It makes life a lot easier too. Yeah. Laughter is huge. Being able to laugh and all that stuff. Yeah. Definitely. The other thing that really stood out, it's gonna sound so silly, that stood out to me about your, your page is charcuterie boards. And I, and I have a fascination with char, not a fascination, I just really appreciate charcuterie. So I was thinking about like, and I don't even know what context this comes up in your life. If you make them, or you host parties, I don't even know, but I saw them and I was like I'm gonna ask about it. Yeah. So, like, if you could build your dream charcuterie board, what would be on it? Well, I mean, my dream board is an interesting question. I'll give you a little background. So growing up, there was no name for charcuterie board. We didn't have that term, but we... Would have people come over and visit and my nana and my mom would always cut up meats and cheeses and we'd have breads and olives and I was just raised that way and then a few years ago all of a sudden everybody started using this term tricotery board and I was all wait a minute. I've been doing that forever. Yeah, so That's how that is. So some of most of them I post are ones that I make for parties and stuff, but dream board, I mean I don't know. A dream board for me basically would be cheeses and vodka and like lemonade or vodka and orange juice on the side. And I just think food brings people together. So it's just nice to, I could throw one of those out and serve them, but I'm a big cheese eater, breads, crackers, as a matter of fact, we, I make a little mini charcuterie boards every weekend. That's our, like our lunch either Saturday or Sunday with some fruit and some other things on it. So. Yeah, it's just been, I don't know, it's kind of fun now because everybody knows what they are. Yeah, I didn't even think about the fact that it may not have really had like a, a term prior. I, I mean, I, I was watching a reality show a few years ago and they went to a restaurant and I was like, what are they ordering? So I had to look it up and I was like, Oh Lord, I know what that is. Yeah. Yeah. Oh, when you heard charcuterie, you're like, what the heck is that? Yeah. I was like, what is that? Cause we never use those terms, but yeah. Yeah. Growing up, we always had like cheese and salami and pepperoni and olives and nuts and you name it bread, but not normally crackers growing up. We always had a bread that we served with it, but yeah. Yeah. So it's, it's just kind of fun. and drinks bring people together and you can sit and laugh. There we go with the laughter again. Have a good time. Yeah. Yeah. So kind of like what, what I wanted to, you know, talk to you about. Today was, you know, kind of starts with Caleb and. You know, his disabilities and then kind of how that has, I guess, created in you, you know, the need to be an advocate, you know, because we are our kids biggest advocates and it's a huge learning curve, you know, learning how to be an advocate for your child. And, and I think that your advocacy experience is, is different than what I feel like I normally come across. So definitely want to ask you, you know, about that and what that's been like for you. But before that, I did want to know, like, what's your, like, your career background? Could you tell us about, like, your career and your family? Yes, definitely. I'm actually a college counselor. I am very lucky and fortunate to work part time. Decision that, you know, my husband and I came a few years ago, decided it was best for me because I can also do advocacy work with my part time counseling schedule. I have a master's in counseling, went to Fresno State. I've predominantly worked my adult life in some type of education form. You know, going to college, I was a para educator for Fresno Unified, so that was way before Caleb. So that gives me, you know, I have that kind of perspective. I worked as a career counselor out in Mendota Unified for a few years, and I did some substitute teaching, which was really eye opening. And then I got hired on at the college and I've been there about 16, maybe 17 years. And then the last 12 years as a part time counselor. So that's my, my career. And I love, if you read my post, you'll know, I love my job. I love my students. And I, I, you know, get a perspective on working with disabled students at the college level. Cause it's very, very different than the K through 12 system. And kind of, like, leading into, like, Caleb, you know, can you tell us more about Caleb and what his diagnosis is, or does he have more than one diagnosis? Yeah, I, Caleb is 16, and he was diagnosed with Angelman Syndrome when he was 18 months old. And it, with, he doesn't have another diagnosis. But there is a lot that comes with Angelman Syndrome, so Caleb does have seizures, they're controlled with medication, but seizures are very common amongst people with Angelman Syndrome. He is nonverbal, he has ataxia I'm trying to think of what else. I'm drawing a blank on it. But that's, that's pretty much Caleb in a nutshell, is that he has Angelman syndrome. It's not common. It's like one in 15, 000. Okay. So it's pretty rare. Although it's like buying a new car. When he gets diagnosed, you start seeing other, you're out and about, and you'll see people with Angelman syndrome. But in the Valley, and not that I know everybody that has Angelman syndrome, there's maybe a handful of people that have what we call AS. I mean, just over the years and doctors who've reached out about certain patients, I would say maybe 20 to 30, if that like it's pretty, yeah. And Sanger and our, I mean, there might've been one other person and he's older that went through the district that has Angelman syndrome. So it's pretty like not common, maybe misdiagnosed and possibly could be misdiagnosed for autism or cerebral palsy. And I think that. It's happened a lot. I know the Angelman Syndrome Foundation has worked hard to get the stuff out about, I'm trying to think of how they, you know, to doctors and hospitals like looking at maybe this is a possibility for a diagnosis or whatever. How would you describe to someone what Angelman Syndrome is? Well, it's a deletion of chromosome 15. And so, I mean, really, he's, he's missing a part of his chromosome, the maternal part, if I'm correct, on the chromosome. Caleb has the most common form of Angelman syndrome, which is the deletion, and of that we were doing a study when he was younger down in San Diego, just a natural history study, because Angelman became a diagnosis in the late 80s, early 1990s, so it's fairly, fairly new diagnosis. And it was Dr. Harry Angelman, that's how the name became Angelman, not because they're angels, because that was the doctor's name who discovered the gene and realized there were similar characteristics as far as like laughter, kind of their jawline. Just a happy demeanor the ataxia, the wide gait and stuff and not all people with Angelman syndrome walk. Some of them are in wheelchairs and don't have the ability to walk. Caleb was tested to see the size of his deletion and it was years ago, but if I remember correctly, he was the bigger deletion. And I remember the doctor in San Diego saying that she was so surprised. Because they typically see the kids with a bigger deletion who don't walk, who have more seizures and just struggle a little bit more. And then she proceeded to tell me that's why we do this study because we want to see across the board what it looks like. Is it the kind of thing that, that a doctor could see when, when a baby is born? Or is it something that develops over time and then you would, you know, approach an evaluation? It's not anything you could see. I Caleb's pictures. Right. So, I mean, I mean, if he's not communicating the way he communicates, one of the ways he communicates, you probably wouldn't even know he had a disability if he's just sitting there. So, it is something that when they're not reaching milestones that's when you start looking at what's going on. And that's exactly what it was for us. In about five months, six months I noticed Caleb really wasn't doing anything. So, he would just... He was just laying there. He wasn't rolling. He wasn't moving. He barely moved his head. I said, something's not right, like, but my older son was delayed too. He did a lot of things like late, my older son didn't walk till he was 18 months. So I'm like, I don't know, like maybe, and I asked the pediatrician, I remember asking him and, and he just kind of blew me off, which I think is a typical experience for a lot of us. And so I let a couple of months go by and. I was like, you know what? I need to get him into the Charlie Mitchell clinic, which is our clinic up at the children's hospital. And we were able to talk to a friend who got us into the clinic. And even that doctor, who is still Caleb's doctor, he has, he's actually still Caleb's doctor. But even he said, oh, don't worry about it, mom. Kids sometimes don't do anything until they're a year old. Well, when he was a year old and he still wasn't rolling, I said, okay, something's going on here. Yeah. And then we started the early intervention process and none of them mentioned anything to me. And the doctor said, okay, well, let's look at, you know, OT, PT, never brought up speech. Speech was something that came down the road. And in this process, my husband attended a conference and the man presenting. Dr. Modell is his name, was the head of the autism center at Sac State at the time. So afterwards, my husband approached him and said, Hey, our son's really delayed, like we don't know what's going on. And so I reached out to him, he's like, have your wife reach out to me. He calls me one day, we're talking on the phone and he's asked me, can you send some pictures? of your son. And this was old school, right? So I had to go home, get on the computer and email. It wasn't like I was on the phone and could send it to him. And so immediately he emails me back and says, I am not a medical doctor, but I he has characteristics of Angelman syndrome. And then I call him and I said, how do you know that? He said, well, when I did my dissertation, I worked with two clients who had Angelman syndrome and he did his dissertation on Angelman syndrome. And I was like, okay, so then we started bugging the doctor, the pediatrician, to get us into the genetic doctor. And that took a while. And I remember leaving him a message, the pediatrician, the pediatrician called me back and leaving me a message. He said it wrong too. He said, your mom, he said, mom, he always says that, mom, your son does not have Engelman syndrome. And he said, but I will refer you. So We went into again Children's Hospital with Dr. Shin. Dr. Shin and I still stay in touch. He's moved on out of the Fresno area. We sit down, he's looking at our son and he's looking at him and we, we did not tell him prior what we thought, what we had heard. We wanted to see what he thought. And 45 minutes into the appointment, he said, well, mom, I have some thoughts, but there's some things that he doesn't have the characteristics. And I finally was like, spit it out. Spit it out. And then he said, I, I believe he has something called Angelman syndrome. And at that point, my husband and I knew, and we both broke down and the reality of how different our life was going to be hit us and then he asked us, have you heard of it? And we went into the whole spiel of how we heard, heard about it. And he said, I'm not a hundred percent. Let's do the blood work. And then less than two weeks later, the blood work came back and he, he was positive for Angelman syndrome. I had to ask the genetic doctor too. Like, how did you know? Well, he worked on us Angelman study in Texas. And so he worked several years with children who had Angelman syndrome. So he, like I said about buying the car, you know, he knew some of the characteristics and that's. How our journey really began at 18 months old and our world changed tremendously changed forever. Yeah. And then we just started pushing forward and learning and growing and all of it. What, what is Caleb's like? What is his experience been like? Has he always been in like the mainstream, not mainstream school, but like, has he always gone to like a public school or have you guys had him at home? What's that been like? Okay. So I, you know, I didn't know a lot in the beginning as most parents don't in California and I suspect, I think it's that way across the U S school districts start. At three years old, providing services all the way through 22. Well, 21, 364 days old is what the districts do. And so I, I didn't have any clue or understanding of what that was going to look like for us. I did realize at some point it was not going to be easy having Caleb go to a, you know, a typical daycare or a typical preschool that there were going to be challenges. I was very, again, very fortunate that we were, I was able to attend Angelman Syndrome Foundation conferences, so I'm learning from other parents and I, at the time, was working full time, and so I was like, okay, he's gonna have to go into the preschool system and not, I think most of California's districts are like this, they have, they have a SELPA Fresno Unified has their own, Clovis has their own, Sanger's part of the Fresno County SELPA, The county students have been a negative connotation since I worked in Fresno Unified 30 years ago. It still is today. The county doesn't work with districts. That's a huge problem. I mean, I could spend two hours just talking about that and how we're not working together and they're those students. The county students. If you're on, if you go to any number of our high schools, Madera our school, yeah, our school Central Unified made some changes with the county students. Their classrooms are always in the back. They're always away and they're segregated from the rest of the school. It's very common for the county students to be that way. But the number one thing I want to get across to people is my son and those in his classroom are Sanger Unified students. The county provides a service. They are not Fresno County students. They are Sanger Unified students. The county provides a service. Our district pays the county to provide the special education services to our children. But it has caused mainstreaming and inclusion. It's put such a divide. That it's, it's almost impossible to get out of it. When I was doing my internship hours for grad school I got to do the last two weeks in Monta Vista which is a very segregated, School in Eastern Fresno County. But through that I was able to go out to one of the schools in another local district, not in Sanger. I went in asking for the teacher of the county program. They had no idea who I was talking about. I'm like, this teacher and these students are on your campus. So I did that for a few days because I was kind of testing it out. But even after my two weeks there, they, they had no clue. The front staff in the elementary school. So it is that's something that needs fixed. Yeah. Yeah. There's a lot that needs fixed, but that's one of them. Yeah. So Caleb started in, I didn't know I, like I said, I didn't know, I didn't understand the system at the time. And so we right away, we were presented with all the options in Sanger Unified school districts are notorious for doing that. They are very notorious for saying, okay, you have this, and this is, you're only two options. Sign this paper, sign that paper, not necessarily, throwing stuff in there that parents are so overwhelmed and, And if you do have a child with a disability and you're listening to this, you know, in the beginning, it is so overwhelming to come to terms and the understanding of raising a child with a disability. All of a sudden, this child who you thought was going to go to freaking USC and play football is now going to have to be cared for for the rest of his life or her life. And so district's pride. play on that districts. They use that to their advantage. They swoop in with parents and they overwhelm them with paperwork. And we're not researching things. And a lot of times, especially in California, we have both parents work and they're trying to provide for their child. They're trying to deal with this diagnosis. They're trying to do this and that. And then districts come in. And they're like, okay, next thing you know, you're in a county program. The biggest, biggest mistake, and my husband will agree with me, that we ever did was agree to allow Caleb to be in the county program. We were never able to get him out of the Fresno County program. And it's not that we've had some good teachers, not all. We've had some good teachers, we've had some good parents through the county, but it's because of that negative connotation that comes with being a county student. And the fact that there aren't mainstreaming and inclusion opportunities, there's no inclusion opportunities at all, but those aren't available. People look at our, the county students. Like they're nothing and that's a huge problem that we have not only in our district, but across the board in California. So that's how kind of our story started. We ended up with the County. I mean, I knew things from some training, not to sign IEPs to go in. If you're, you know, go in with an advocate or somebody else, which we did Caleb's first IEP meeting. So imagine this, if you haven't been through one first IEP meeting, we walk in. And there's 15 people from the district and the county there. I had known that was going to happen because I had parents tell me ahead of time. And we took an advocate with us. So anytime you take an advocate, it changes the whole dynamic of the meeting. And I have learned and grown so much from that first meeting. But yeah, I would have fought for an inclusive education that he would have been in his home school. Caleb attended one, two, three elementary schools. So I would have definitely, I would have definitely fought for him to be fully included at his elementary school where his brother attended elementary school with the right support. If everything I know now, I could go back. That is the number one thing I would do. It's just so important. I can't stress that enough to have our kids educated together. I just spoke with a mom the other day and I said, because I have these same worries. As most parents do, Oh, we're going to put my kid who's disabled into a classroom with general ed kids. Like, how's that going to look? Are they going to be disruptive? Are the other kids going to learn? And that was me. I'm not going to lie. That was me. I no longer believe those things, but that was me. And what I've learned over the years, one of the biggest things I learned is when Caleb finishes the school system next year, when he actually graduates the high school, because then he'll go into the adult transition. We're just throwing them to the wolves because guess what? He's going to live in this community. With all those same people he was segregated from all those years ago. And that they've separated him. And I think that that's, that's the number one thing is they will live and work in a community together long after the high school years and the middle school and elementary years. When you're saying County program, do you mean like an SDC or like a special day? Class. Yes, yes. So under the SELPA, and if you look at it where school districts didn't maybe have enough funding to run all the special education programs, which I've learned over the years is a big load of prep too, because they do get, when I listened to your podcast earlier, They do get actually more average daily attendance for students with disabilities than, than the gen population. So they're, the money's there. And Sanger is such a big district now that they should be their own cell phone like Clovis and Fresno. But that's what smaller districts, you know, Parlier Mendota because they don't necessarily have the means or the whatever, then that's when they bring the county program into work in the SDC class. The special day class is what they do. They don't do the resource. As far as I know, they don't have the RSP programs through the county. Those are run through districts. But in our SELPA, it would be like Kings Canyon Unified, Sanger Unified, Parlier Unified, Mendota, all those like outlying schools. In Fresno County, you know, whoever else is in, I don't know who else is in Fresno, but yeah. So if you could go back, you would have pushed for Caleb to be in an inclusion program from the beginning, we would've developed an inclusion program. Mm-hmm. Mm-hmm. we, we would've had to have developed it. Mm-hmm. Yeah. It's not anything that any of the districts in this area. Fresno to Larry Kings County. Nobody practices that. You obviously have friends in all those areas. So we would have developed a program for him and we would have fought the district. We would have held off on putting him into school at three, but I didn't know that I didn't know any of that was an option. I didn't, like I said, I, I was under them in my, my opinion at that time was like, Oh, I don't want to distract the other kids. But I've since changed my opinion and I can't go back. I can only go forward and I can help other. Parents along the way and talk to them about the inclusive education. Yeah. Well, it's definitely not presented as an option. You know, I remember when my son, he was, he was evaluated through Fresno Unified, so that's where he started. And so I remember his first IEP wasn't like, well, we could do this. So we could do this. Is this kind of like, this is what. He would do and so you're like, okay, and you're right. Like in the beginning, it's very overwhelming. You don't know what the hell you're doing. And so when someone's lays out a plan for you, it's like, thank god someone has some kind of idea of what we're supposed to be doing so Yeah, and and I don't know like how often do we really see that where we see a child with a disability in a classroom with with gen ed kids, you know, right? We rarely see it I mean, it is rare there are the, the hidden disabilities, maybe, you know, the dyslexia deaf students, you know, yes. You're going to see that. Are you going to see my son who has significant disabilities? I'm not going to sugarcoat that. I mean, he does in a classroom while you are, because he is 45%, 48% mainstreamed. He is, and I have that one of your questions. I wrote that down. I was like, Oh, I want to make sure I talk about this stuff with him. And it was years of, of advocating and fighting the district to go ahead and get the, the okay on some of the stuff that we do with them, but no, we don't see students like that, but I've been lucky enough to present. I presented Fresno state almost every semester. I've presented for Caleb when one of his elementary schools and then seventh and eighth grade, I was able to go in and talk with the, his classes then. And the one thing I always say is, especially with the young, younger kids, one of you undeniably, one of you will have a child with a disability like Caleb. It's just the way life is. And that's, what's going to happen. And Caleb, you know, I used to believe, Oh, it's so good for Caleb, which it is. Jeanette is good for him, but the flip side of it is. We're we're raising and if we're practicing inclusive education, we are raising compassionate students and students who take a look at Caleb and say, wait a minute, we're all different, you know, and that's okay, it's okay to be different. It's way easier to do inclusive education in elementary school. It's more difficult in middle school and high school. And, you know, we all know teenage hormones and all that stuff goes on and attitudes. But Caleb has had some great students over the years that have included him. This year, if you saw my post, the yearbook teacher was amazing and including him in the big yearbook field trip. So it's, but it's not just us wanting that. It's having a staff, a principal, a teacher, a special ed teacher, having the supports in place. Just like Ariel said in your other podcasts to be able to work together to be able to develop this environment of an inclusive education. And I have gone to our board. I've asked them over the years. Why can't we be the leader in inclusive education many years ago, the state. Education Department put out an article about Sanger Unified. It was all lies. You know, they were acting like they had this big inclusive environment, and they were educating special education students. God, it was not true. None of it was true. I mean, I was laughing at it. I still have the article somewhere. But the reality is they put out a big, I wrote that down, too. I was writing notes. They put out a big facade, school districts. With numbers and stuff, but that's not really what's going on. They'll take a kid who's maybe dyslexic, right? They'll take the dyslexic kids and be like, Oh, well, we're mainstreaming, they're included. But are you including these other students? You know, that's my question. Are you including, and it's not happening. I mean, it's not happening in our district. I don't think it happens in other districts. Yeah, I, I think something that kind of always comes up for me when it comes to advocacy is, you know, I haven't had to really advocate very hard for my son. I haven't had to, to advocate as hard as some of my friends have had to. My other, you know, I have a lot of friends that have disabled kids, autism, ADHD, and different things. And I think something that, that always Kind of, I guess, comes up for me or stands out to me is, I guess just the idea that a parent would have to fight. A system that really should be already fighting for their child. Does that make sense? Like, it just, it's just weird to me that as parents, a lot of us have to fight for, like, the fact that they would put out false numbers, or that they would kind of try to manipulate numbers so that it's kind of true, but not exactly true. Like, the fact that that's even a thing, it's just really... What's that word? It just makes you kind of jaded. Disheartening? Yeah, it's disheartening and it's like, I feel like, like that's, that's where we send our kids five days a week for how many years? And you would think it wouldn't be a system or like an organization that parents would have to fight against. You would think it would be more like, like, in my experience with, with my son Riley, it's been more of a partnership where, you know, it's, it's been like, I, I've been able to trust that they want what's best for him. And so it's, it hasn't been a huge. Thing for me a huge struggle Advocating for him, but I know for so many parents it is and so I guess like when when I think about like What I would want to ask you because Caleb's 16 now you've been doing this for a while How do you? approach A system like that, that's so huge, that has the money, that has the authority, and you're just this mom who wants the best for their child. Like how do you emotionally and mentally prepare yourself and gear yourself up to advocate? Like what's that been like for you over the years? I think the number one is educating yourself and learning. Fortunately, I speak English. I have a master's degree. I know how to research. And we have to remember there are thousands of kids across the US whose parents don't have the same education level who maybe don't speak English. And that's One of the reasons I do the advocacy work to is because I want to make sure I'm not just representing my son, but that I'm representing all of our students and that this is something that carries on down the road. But it is a difficult process. You're coming up against a school district. A school board. You maybe have board members who don't understand, who have been sitting on the board for 20 years, who've never met a child with a disability. And when I speak disability, especially in this podcast, I'm speaking Caleb's disability. Mm-hmm. Who've maybe never met anybody like that. Who has no idea that there's IEPs. I can guarantee you there is maybe one person on the Sanger Unified School District Board that knows what a 504 is and knows what an IEP is. Wow. And so I think that that's a huge, you know, that's a huge concern too, is having people who are governing our schools, school boards, who know nothing about special educational education. Our superintendent who's retired or getting ready to retire, she I met with her when she got hired on, you know, I thought, okay, there's a change here. Let's see what we're going to do. I asked to meet with her and she did. She agreed to meet with me early on. And in halfway through our meeting, she's like, I'll be honest with you because my concern was the classroom where it was located at the high school. She said, I'll be honest with you. I don't even know where the county classroom is on the high school campus. And I said to her, you have one high school, one high school. How do you not know where your county classroom is? And she said, well, I'm not very familiar with special education. Then how did you get the job? Why are you here? Because you had 1, 800 students at the time that were identified as special education. So how did you get here? So, I mean, but there is, there's... It's going up against the districts and fighting. It does get tiring sometimes, and sometimes I have to shut it off. And I have to walk away and say, I need a breath from all of this. I need a minute from all of it. I'm not the only parent. I'm fortunate that in Caleb's classroom, I have befriended several of the parents. And when we had a big issue several years ago, we all came together. And there is power in numbers. So if anybody takes anything from this podcast, get to know a couple parents. In your special education classroom there are powers and numbers and our lives are crazy chaotic, but we worked it out. We were able to manage to meet a few times went and presented to our district over the issues that we were having and it worked. They don't like that we talk. They don't like that the parents all talk. And then I'm lucky that I have some other parents who their children were saying you're unified students. They were not counting students and they've since they're in their twenties now. But they've been a good role model for me and I've learned from them and what they wanted for their children and mistakes that maybe they made and, and so that's helped. And although Sanger's big, it's small. So my husband's family has deep rooted here. His grandmother graduated from school in Sanger. I mean, they've been here forever. He, we know a lot of people because of that and I think that makes a difference. It should not. It should not at all make a difference. on how we decide to educate our students with disabilities. But for us, personally, it has made I believe it's made somewhat of a difference. One of the board members knows my father in law, and when we were having some other issues, he popped onto campus one day, you know, and he went into Caleb's classroom, and all of a sudden things start changing because of that. So that's been part of the advocacy and... Several years ago, before pandemic, I started going to board meetings and presenting my main thing was that classroom on our campus at the high school. I wanted it moved. It was not moved. They made some adjustments and because the campus, the school's grown so much. Now it's all part of the school because there's other classrooms back there, but that wasn't intentional. That was because they didn't have a choice. But that's how I started going to board meetings and you get three to five minutes. So I write out my topic and I would just try to talk to them about different issues. Knowing that they have no idea what's going on. We have a new superintendent. I think he knows a little bit more about special education than the last one. So, I mean, I'm hoping it's a better process, especially for our younger students coming up through our system here in Sanger. But it's, again, you know, a learning process. At times I felt very alone. You know, my vision for my child is different maybe from the other parents. I remember I had a mom ask me one time about what's this inclusion you're always talking about? You know, what's this inclusion? So I was explaining it and, and, you know, it's just, they don't know, you know, if they're not going to trainings or they're not, and then they're like, Oh, I like that idea, you know? And I, so it just starts from there and just making it known that I, you know, understand the IDEA and the IEP process and the laws. I think that's important. I have a book. Oh. Have you seen this book? I'll show it to you, but I know it's not. It's called the special, this is what I call my bible, Special Education Law. It's written by Wright's Law. That was my first IB training I attended. I did have to pay for that to attend. I wish I would have done this before Caleb started the system. Just amazing information. I, this is all, you can see all the tabs, tons of tabs. It has all the laws and everything in here. And then I did, are you familiar with the Brin Clinic? Yeah, Jodi. San Joaquin Law. Yeah, so Jodi's, I did, I was in her first class. That's where I got a lot of my advocacy stuff from. Amazing work that she's doing. It's absolutely amazing work there. And that's, that's her whole premise too behind that is, inclusive education, even though her son's like Caleb's age, you know, they're aging out. It's still that inclusive education and everything. Yeah. So, yeah. What would you say has been like your biggest challenge as Caleb's advocate over the years? I think because you sometimes, you will sometimes form friendships with staff, teachers, paraeducators. But then when you have to hold them accountable, that becomes probably the biggest challenge. Because you're like, wait a minute, I'm going to, I'm going to step back and I'm going to talk to them first before and see, can we get resolved this way? If it's not getting resolved, then I have to go on to the director or the, you know, the school psychs or. You know, the coordinator of the program and all of that. So that part's difficult. Just, yeah, that's probably the most difficult part. And then just being able to get what you're asking for because we've asked for a line and we've not gotten all of it. Yeah. Makes it difficult. And draining. It can be draining. Mm hmm. What do you do for yourself when it's draining? Like how do you, how do you work through that? I'm pretty sure I was on fast forward most of Caleb's life. In the last few years, I finally realized that I have to take time for me. I'm a better mom. I'm a better advocate if I'm stepping away from it. So I actually just started yoga, which is kind of crazy that I did my first yoga class. I've done three now. So I started last week and I walk, I do power walking. That's helped a lot. Just. And then separating myself from it. So, you know, if we're going out, my husband and I, we're not talking about what's going on. You know, we're going out and we're gonna have dinner and we're gonna talk about everything else, but we're not gonna talk about that. Mm hmm. And then I can always come back with a fresh mind. I don't do a lot of even Caleb's work or advocacy work over the weekends. And Sundays I try, I've been recently now putting my phone away, so I don't even have my phone on me just to say, okay, I need to step away for a minute and then Monday come back out at full force, whatever is going on, whether I'm back out at work or I'm doing, you know, advocacy stuff or working on Caleb's stuff or Caleb's IEP. Yeah, yeah. What, like, words of encouragement or wisdom would you have for moms who are, I guess, either dealing with... With really stressful advocacy issues, or moms who are at the very beginning of, you know, getting their child into the system and, and trying to navigate that? Well, I mean, first of all, I would definitely, definitely tell moms. to educate yourself to learn special education law. Now, locally, we have a lot of opportunities. We have the Bren Clinic, B R E N. I think she's only accepting local students into her clinic now. And I believe it's still on Zoom. So educate yourself, know the system, know your school district. Know what you want ahead of time before you go into the school system, before your child goes into the school system. Know what you're looking for what your vision is for your child. Never sign anything. Never ever sign anything. Go home. Get it out the next day and then read through every single thing on there. I can't tell you how many parents I've met over the years who've signed paperwork, had no idea that they were signed, didn't really read it. And next thing you know, their child's in a completely different school. They didn't know that that's what they were signing. That was my first advocacy case out of Tulare Unified. So that was an interesting case to work. Yeah. And then just making friends and getting to know other parents who have children with disabilities. And. Who are on campus with you, making friends with the gen ed parents, making friends, like having that balance but there is power in numbers. There's by far power in numbers. Yeah. And then finding an advocate. I think that's important. The first few years of Caleb's education until I really could grasp a lot, we had an advocate come out with us. The regional center will sit with you on if your, your child's regional center client, which ours is, we always have as regional center. Caseworker come out with us always. She don't say anything. She just sits there. But that's that extra person. We had an advocate from EPU for years come out and sit on IEPs until, like I said, until I got a grasp where I'm like, okay, I don't necessarily, an advocate can change everything. I just did a case last year and mom and I met. We got it all ready. She informed them. She was having an advocate come. I could speak for them because sometimes they don't want you to speak. Sometimes they do. We go into the meeting. It's on Zoom. Hour and a half. Hang up. Mom and I call each other. What a debrief. And mom says to me, Wow, I've never had one of those meetings last longer than 15 minutes. Wow. What a difference it makes when you plop an advocate into the scenario. Yeah. So I was, I wasn't surprised. Caleb's I think longest IEP meeting was probably eight hours or nine. It was extended over three days, but that was probably his longest IEP. Our, our IEPs are typically two, three, four days, where they're an hour. Now they cut them down to an hour and a half. So that's why I have multiple days of them. If you've seen some of my posts, I don't sign anything and I spend a significant amount of time laying everything out and reviewing everything from the last IEP, the current one, what was said actually. I got the IEP. They, they printed it out for me after our last meeting. I went through it and found probably seven different things. They added that wasn't originally there from the meeting. Really? Yep. Wow. Yeah. Yeah. So you kind of have, I don't agree to everything either on the IEP. Sounds like you have to be very like, you have to be on it. You have to be on the ball for sure. You do. Yeah, you do. You do. And I guess too, like knowing. Knowing the law, like you said, is important. So like a lot of moms will be like, do I have to sign it? How long do I have to sign it? Or like I've heard situations where the school will come out with the, with the IEP, like sign this, you know? So yeah, I'm sure that's exactly what happens. Yeah. So knowing, knowing how long you have and all those different rules is. It's huge. Yeah. It is. It is huge because the district will use that to their advantage. They will use what the law is and especially knowing, you know, most parents don't know what the law is. They don't have an understanding, not an understanding. They just don't realize there's, there is a lot there to protect our kids. And you know, I want to believe that a big chunk of people in education want to be there for the right reasons. That they love our kids and they want to include them and they want to make this work is, is an inclusive education model going to happen in my lifetime? Probably not. It's, it's a whole systemic issue, right? It's a systemic problem. It starts at our universities. If you look at the Fresno State Credential Program, they don't educate teachers together. They don't educate our K 12 teachers with our special education teachers. It's a separate program. Well, let's talk about why aren't we working with them together. When I was in the credential program myself, I had one class for special education. When I was in my master's program and did the PPS, I had one class in special education. So, I mean, we're not, we're not training our future teachers. To work with students who are disabled, who are different and to work cooperatively with special education. So that that's a big problem. It's not just Fresno State. I mean, I'm sure the other programs run the same but that's because that's our college here, our university. So that's, you know, that's a problem. That is, that is a problem. It begins there, but can districts start making changes now? Of course they can, you know, they can work with universities and. You know, there's so much that can be done in this day and age with technology, like there's, it's limitless, you know, it's thinking outside the box just because we've always done it this way, doesn't make it right. Yeah, I think that was something that Arielle said in that podcast episode you mentioned is that like, when she went to get her degree, she automatically did the special education piece also, even though she didn't intend to use it or work in special education. Yeah, I'm sure that would be huge. Yeah, it's definitely, I mean, we need to change. And there is a difference, and you may know this, but there is a difference between inclusion and mainstreaming. Caleb is mainstreamed. A fully inclusive special education student, disabled student, would be on the roster in every class would be part of that classroom. So Caleb is not fully included. Part of his day is spent in a special day class. I don't agree with that either but that could be a whole nother episode too about segregated classrooms and segregated schools. He is mainstreamed and we have worked really hard and we are very lucky we've been able to have him mainstreamed in English and history and even we tried math one year. In high school, he's done yearbook. Of course, pandemic set a lot of things back. He does student government. Caleb's the first student with a disability of his type of disability that has ever been able to do student government. So, that was a big move. Sixth grade camp, which is very common around here. I didn't know anything about it until I actually had boys and they went into school systems. You know, it's kind of a rite of passage. I'm going to guess, even as I say this now, Caleb is the only Fresno County student. And the only student with his type of disabilities that was able to attend sixth grade camp with his sixth grade class from the middle school that he was in. And so that was a, you know, big significance for him. Something new, and I just wish we could have this all around that's happening in our high school. And I want to shout out about it. They have, and it came from the PE teachers, Gen Ed PE teachers, they want to do a friends with PE type of situation class, and so they've developed this class for Gen Ed students, and special ed students will take a Gen Ed PE class, and they'll be paired up together like buddies. For the class. So that's going to start this fall. That's cool. And that would be kind of exciting to see. Yeah, I think I love the initiative. I they're gearing it towards the teaching students because we do have a pathway at our high school for teachers. And I love that. I love That, and they had already been, when we had his IEP meeting, the first class was already full. Wow. And students already did sign up. Yeah. That's awesome. Yeah. So it's those type of changes, right? Okay, so we did that for PE, but now can we do it for maybe an art class? Or can we talk about doing it for an English class? You know, there's just different ways to kind of look at that. Can we provide the right supports, the para educators that we need? Yeah, that'd be awesome. And like you said, I think in the beginnings, you know, it doesn't just benefit the students. It's, with the disability, it benefits the students that get an opportunity to learn from them, you know, cause there, there are so many things to learn from kids and students with disabilities. So it benefits everybody. Yes. Yeah. Yes. Well, thank you so much for joining me today and having this conversation. I really appreciate it. Well, thank you for inviting me. I mean, I love to share our journey and Caleb's story as I call it. He's, you know, taught me a lot in life, just really opened our eyes up as parents. We see things so differently now. But it, it's. It's been a, it's been a journey, but there's definitely been some really good times on it. And, and I love seeing him excited, like our yearbook trip, you know, he just was loving it and in heaven. And it was exciting. He loved the bus ride and just being included was so big for us and we had no idea the teacher was doing that. Yeah. We. It wasn't until the IEP meeting. Oh, by the way, Caleb in the yearbook, the trip, I was like, what trip? And so it's kind of exciting. So yeah, I, I, I mean, if I leave you with anything and your listeners with anything, it's definitely educate yourself about special education law and find some parents who are on your campuses and get to know them. And, You know, that's how we're going to start changing things and going to school board meetings and breaking down these barriers and these beliefs that people have, you know, presuming competence. That's another thing. Like, always presume competence, no matter what as a parent, as an educator. Definitely. But thank you. I do appreciate it. It's my first podcast. Yeah. Thank you so much. Yeah. You did great. Thank you. Thank you. Thank you so much for joining me for another episode of rad mom radio. If you'd like to get in touch with me, you can send me an email. My email address is rad mom radio at gmail. com. You can also find me on Instagram at rad mom radio. Hope you have a great week and I will talk to you soon. Bye.