Transcript
Hello, and welcome to the If We Knew Then podcast. I’m Stephen Saux..
0:32
And I’m Lori Saux.
0:34
And today we’re joined by Julie Picot where we talk about transitioning from TK to kindergarten, but let’s jump right in and see where it goes. welcome Julie Picot.
0:46
Good morning, Julie Picot. Happy New Year,
0:50
Happy New Year, I love your festive background.
0:52
This is the weekend that we put on the calendar to take the lights down.
0:57
I think they look beautiful i We would normally keep ours up later, two or three was dead. And we were just it was like on a lifeline. But we had to switch and start a fire in our apartment complex.
1:06
In the past, I have been pretty hard on how everything has to be in its place. And you know, and that’s my responsibility. And if it’s out, then it’s my responsibility and gotten overwhelmed over things, how they should be, and I’m really working on not getting overwhelmed how things should be. Right, allowing them to just be and and then dealing with that. I think that kind of I think that is a result of actually this whole journey. You know, yeah, probably Yeah, once you have a child that has a, you know, an IEP, or any kind of any kind of difference or challenge where where you’re having to advocate for them, I think that it’s definitely a result of the fact that I can just look at how things are and not get frustrated about how they are I mean, I guess there’s a bit of frustration, you know, like when you’re right and, and but just getting through that frustration, quicker to be able to be with what’s in front of me, and maneuver through that and make the changes I need to or whatever has to happen. And that’s more than just taking down the Christmas tree. That’s, that’s like every IEP every transition every first day of school, every birthday, every holiday every family outing. It’s just taken 14 years. Well, we are so happy to have you here with us today. I see it’s been a long time coming your return. And when we originally started this conversation, Elise was making that transition not only from TK but into the school system, which is very, that can be very jarring. But not only that, it was out of the LAUSD school and into the charter. And one of the things we really wanted to talk about is how that unfolded and what that journey was and how it felt like how it felt and how you got through it. Yeah,
3:05
that’s emotional. I think, um, I mean, just in general, with any kid when you’re handing them off to a bunch of strangers who they’re going to be with the majority of their their days. No, at this point, that’s always hard. I felt good going into CW See, just because of all the research I had done into them over the years, anyway, because I know they’re so inclusive, and that’s, they were the only school out of all of the schools that I toured, that didn’t blink an eye when I told them that at least had Down syndrome, and I wanted her to be fully inclusive. The rest of the schools were like, well, you know, that’s probably not gonna be like that, you know, we’ll do what’s best for her. Without even knowing her, they’re already assuming that may not be best for her or sometimes a look a fear in their eyes, you know, in shock. So I felt really good about that. I had gotten to speak with their special education director earlier on, and I felt really good about that, too. But there were transitions. So the special education director had gone she was split between two of the schools. So she went full time with one of the schools and we got a new special education director. And we had the 30 day IEP coming up, you know, so there’s, there’s all that but I really did, like and do like their special education director, she has a couple of years experience at a different citizens of the world. And she had a really good reputation. And
4:40
I just wanted to say that citizens of the world, that’s where we’ve had the conversation because that’s the school that Liam also transitioned into, and I know we had a lot of side conversations about the inclusion and about the difference and what it what it felt like like you were saying what it felt like like to just have somebody, like almost like you were the one carrying the weight of the extra chromosome like you were the one making it into a big deal, because their inclusion doesn’t just branch to a child with an IEP, their inclusion includes everyone. And that by definition, I think, is that what changes it because since we learned the word inclusion, that was when Liam was going to transition out of his preschool into LAUSD and we were stopped, because we had always been taught the Word mainstream. And mainstream is when they choose and select when your child is with the general population. And that’s usually art, and lunch, and PE. So the word inclusion inclusive classroom was given to us and it was such a gift, because in an IEP, that word is all the difference, because once they hear you say mainstream, unless that’s your choice, once they hear mainstream, they’re never going to open the inclusive door to you. And the great thing about citizens of the world is inclusion is just their model. It doesn’t have anything to do with special education, special education. It’s an inclusive model. Yeah,
6:19
we’ve had multiple episodes with administrators from the school. And we’ve talked about it with you, Julie, we’ve told you had just, Lori and I talked about on episode. So we’re all champions of that school. But
6:29
I want to go back, though, because the episode that we didn’t get to have was that IEP that last TK IEP? Do you remember that like when you were being this, just the chat, and we can talk just briefly about that, because Stephen and I were talking this morning, and one of the things that I think, I think the information has always been a help to me, like when someone will give me the information, but also the feelings. Because a lot of times as parents, we go through this journey, and we have to be so strong. And that’s just how it is like, I know, it’s a feeling I don’t have to be strong. But I think that that has that has benefited me. And I won’t say strong, I don’t think you’d have to be strong, I think you’d have to, I think it’s best if when when I personally stand in my power. And I’m in the present moment, which would look like also not, I mean, for me recently not bringing every time there’s a challenge, not bringing, you know, this the seven years with LAUSD that we’re just a tumultuous attack. And so I don’t want to tell parents, they have to be strong, because we just, we just have to be present. And we just have to, you know, stand and know our our power and, and our rights and the equality and the rights of our child. And I think when I stand there, when I don’t question that my child’s equal, that’s enough, like you were saying, going to the other schools, and how they blink and they say, we’ll do what’s best for your child. And we know we’ve all heard those words before that is not that is in no way. Once someone says that, that means they’re not going to listen to you, and they’re going to tell you what’s best for your child. Most of the time without knowing your child and only having preconceived thoughts and knowledge, thoughts, no knowledge or preconceived thoughts. So if you don’t mind, like just a little bit about that, that transition?
8:33
Yeah, it was a little nerve wracking. You know, even though I had a lot of faith in the the choice I had made in the school. Like you said, it’s hard not to enter a new relationship without taking the baggage of your last relationship into it. And even though you’re consciously going like it’s okay, this is a new start. That’s with you, you know, it’s in your memory bank. And they were really nice. From the beginning. They had a new special education director, which, you know, when there was a change, I got to have a conversation with her. And I was really impressed with her. You know, the things asked her right up front with about the big the one on one, being able to be there to greet at least from drop off to when the bell rings because it’s different, you know, the the times and the slabs that are put on the LAUSD, transitional kindergarten may not align with the school’s timelines. Yes, of course, you know, we’ll do whatever we can, if they’re not there, right at drop off. I’ll be there. Other people will be there. And she was very upfront with me too. It’s a new school just for anybody listening. This CW C is the seventh school they have in the nation, but it is their newest school. So I knew going into the school there were going to be a lot of growing pains just from the refuse anytime you have a new school, there’s going to be more turnover. A big part of that is because a lot of people who get their education for teaching are taught about curriculum building not about child development and how to be with the child and their emotions and do To show social emotional learning, so after a year of doing that, they may go, this actually isn’t for me. So I knew that going in, there was gonna be turnover, there were gonna be some challenges and she was new and she was rebuilding, she was building this special education department basically from the ground up. Um, so she’s very upfront with me about that. I also wanted her to know, that was very important to me that at least have a female VII because she’s gonna be using the bathroom and having assistance. And she was like, Yes, of course, that’s an alignment with our, our procedures. I mean, really, there was nothing. I left there feeling bad about and I really appreciated that she took the time to talk to me about this before school even started. So that was all great. Elise seemed happy. You know, Jasmine, wasn’t that easy to transition? You know, she was she loves school. She’s a social butterfly. But she did not want to leave mommy, she didn’t want to leave home. But you know, even if at least grumbled a little bit, when I pick her up, she’d be smiling. You can tell. You can tell when your child is happy and being cared for. And I’d say How was school today, it was great. It was good. So that was the initial transition was just getting in the door because the 30 day IEP isn’t for 30 days.
11:16
Before the 30 days, though, the difference between what you experienced when you because you had to have your transition IEP with an LAUSD school until Elise was accepted into the charter school. And that experience was from our conversations very different, you are getting the runaround, you are getting that having to fight for placement having to fight for inclusion. And I guess we don’t have to like set all that up, I just want parents to know that you’re not alone if you go into a school, and they’re immediately trying to put your child into a special day class, but that’s not what you want, or they’re not talking about inclusion, and they’re trying to tell you who your child is, just please go to the special education department for your, whatever your school district is, and have, they should have a page and that is all the timelines for IEP S that is all of your child’s rights. As far as an education, your child does have the right to an equal education, they have a right to FAPE they have idea they have all of these things behind them, which provide an inclusive environment are our children need to be together, our children need to learn from each other. And that does not in any means mean that your child will learn from a child who does not have an IEP, or is you doesn’t have neurodiversity. Those children, learn from your child, we are all learning together. And it’s important that we’re all in the classroom, it’s important for the teacher, it’s important for the administration, it’s important for the older teacher who has archaic beliefs. And that’s one thing that like you have to understand people are a product of their life. So they may be a teacher, but they may be a teacher who started in 1950. And the rights of individuals with disabilities wasn’t a thing. Having a child with a disability, and we’re talking being left handed was considered a disability. So just know that when when you when you’re in that first IEP, if you just have the facts, and if you just stick to those facts, those those are the rights and the rights, actually, the laws actually do support your child. And then we have many, many I IEP episodes that you can listen to that we break it down, but I just I just want to talk about that you experience that. And then you have this transition when Elise does get into citizens of the world, which is an inclusive environment. And that feeling of because we’ve all been there before where they go, oh, yeah, we’re gonna do that we’re going to do that. And then they don’t. But it’s a weird feeling when someone’s like, no, that’s part of who we are. And that’s what we’re going to just provide for your child. That’s, that’s a hard that’s a hard transition for the parent to make when when you say,
14:13
oh, yeah, absolutely. I mean, even when you’re trying to look at it, like, if I hit a bump in the road, and then it’s okay, the world isn’t over. I’m gonna fix it. It’s still you know, it’s your baby. It’s your baby. Actually, we we were contacted by our lawyer, Georgiana recently, who wanted to let us know that there was an opportunity for us to hold LAUSD accountable for the fact that they never offered a lease at least restrictive setting, and that we could, um, I don’t know if the the terminology Sue is correct. There was a different term that’s not coming to my mind right now. But to basically Sue LAUSD for the funds we paid toward our private preschool. Because of that, and that was a really hard decision I reached out to you I was, you know, talking to my husband really. And the reason that was a hard decision was because it’s very multifaceted, right? We gave them a ton of our time and energy. And how much more time and energy am I going to have to give them now that we’re kind of in this more peaceful place. But also, I, my thoughts were will, I was going to send at least to that preschool anyways, so that was always our plan. But if I were to sue LAUSD and hurt them in their pocket, which is the reason they do much of this in the first place, which is the reason they they don’t offer our children an equitable education is because it costs them money, then it would be worth it, right. But it became very clear after looking into it and talking to people that it wasn’t going to make that change, because that’s really a drop in the bucket to them. Because so many people don’t hold them accountable, it’s still very much worth their time to do this, because they know they assume that go in with these intensely assume they’re in the wrong. So they just write these checks, because in the end, they still save, or, you know, don’t have to spend this money for what its intended purposes. And that’s such a great level, it’s worth their while. It weighed heavy on me, because I wanted to send a message. But I also didn’t want to waste my time. And if it had been where I was able to sue them, for the cost of a one on one for that first year, they denied that to Elise, I would have because they did great harm to Elise in denying that one on one. But we didn’t have the money in the first place to pay for that one on one upfront. So we couldn’t. So that’s kind of been our last piece, their attachment to working with LAUSD and we ultimately decided not to, because it wasn’t going to make the difference we would want to make. And again, even even if it didn’t take much of our time, the way they do it is they just sign to have you sign an NDA, a nondisclosure agreement, and they give you the money, and I don’t ever want somebody to restrict my freedom of speech in any way. In fact, I believe that should be illegal to bind somebody’s freedom of speech based around litigation. I just think that’s wrong. And I feel like that needs to go all the way to the Supreme Court. I don’t know how that’s been allowed to go on for so long. But I want to get up on a stage and feel free to tell people exactly what I think which I know I can but without worrying that I might talk about the settlement and then break the law. So we decided not to do it.
17:42
Now we i Because I remember talking to you about it. And one of the things with Stephen and I and our challenge when we finally left Carpenter, like we had stayed in carpenter through so many. You know, like, it’s just it was the constant denial of Liam’s education, that constant non implementation of his IEP, like not even doing his services, when it would come up that he they didn’t, they didn’t implement services for like a year of resource. So for one year, our child sat without being supported and his IEP, and that year, he failed. And there’s, and we just, I think we stayed at that school hoping that we just kept fighting, that there would be change if we just kept like, we’re going to show them, show them what Liam can do. And they saw what Liam could do, and they still continued to deny him his education up until the denial of his placement, his actual denial of his placement, which is absurd, like, just hold that hold that in your thought that a child was denied the ability to go to school and receive their education. Today, this like in recent, like within what was that, like three years ago? Right, that was that’s present day. LAUSD. And the hardest thing like every along the way, we saw so many of our friends who had students with IEP s that would just pull their kid out. And we were like, This is what they do. They call it they create a non inclusive, segregated environment within their school district by bullying everybody out. And it’s and that is the system in place and that is what is supported, all the way up. All the way up the principals, the vice principals, the API s is an all the way up into the district. That is exactly what they do. They are not held accountable. We fought so many times endlessly. Just I would say I just want them to be held accountable. And I can’t tell you how many people within the district our own Lawyer like told us they will never be held accountable. Now let that stick for a minute. That’s garbage as a whole, an entire school district not to be held accountable for violation of civil rights. And it it, it honestly took us that last bit of them completely just telling us I have a job to keep, I have a job to keep. That’s why they didn’t allow our child into the school, that we realized that your job is not to educate our child. And it was really hard. We were so torn because we wanted to make a change. And we did not change a single thing at that school. They actually emailed us and said, You’re invited to the 100 year Jubilee celebration, come celebrate the school. And I was like, that’s how that’s how what does it call them? People are totally like, inept, inept at their job. Like, they’re literally inviting someone to come speak about them. When they like, like, completely violated this child’s civil right. Like, they’re so inept. And also so confident in what they do that it’s like, there’s just no, there’s there’s no accountability. And so that was a really, that was really hard for us, because it was hard for us to realize we hadn’t changed a thing. It was hard for us to actually pull pull him out, then it was hard for us to think should we have pulled him out years ago?
21:30
Yeah, that was really good to just wring your hands of the situation to Yeah, to just be done. Like, that’s what I was thinking of when Julie, you were talking about, we decided not to do that. And now I can freely speak about it, you know, that’s a part of it, too. But also just be like, Hey, can I just cut these threads? Yeah, just just, you know, dust my hands off, I don’t want this anymore. Just, like, take a shower from this school, in this district. And, and move on. Like, to really do that. You go, oh, let’s weigh that peace of mind compared to thinking I can maybe make them accountable or pay for something like, and then once you see how big it is, and you realize, no, I’m I’m not really gonna make a dent here. There is a point to walk away. And there’s another way to advocate right, to to not sign that NDA and to talk about it. And to, to spread a word that could become something, you know, rather than have an agreement with a with this entity that is just kind of gross. Yeah,
22:38
because they do it intentionally. And they know that that’s what they’re gonna do. And then they try to silence your voice, you know, and I think I don’t think that was when I when I said, like, I realized that just, you know, being where I am. Like, and not just like being present in that moment. It ever since we left, it’s just like, I’m just gonna be right. And it was really hard. It’s like, I still have emails where I’ll just be like, you know, I’m still, I’m not gonna let this like carry over and be something that it’s not. But I think just like detaching from that school district. And if you stay, like, if we wouldn’t have had another place to go, we would have had to stay. And we would have had to fight. But we’ve been given the opportunity to do something else, we’ve been given the opportunity to not fight and to be in a pleasant place, and you can’t, you can’t be in two places at once. And I know, like when we discussed about going back, like, it’s hard because money is money. And you know, there’s we can all think of what we would do if we could get, you know, with some extra funds, like there’s things that we can do. And then at some point, it’s like, how much of my piece Am I giving away? And I think that’s the conversation that we had is that once you realize, well, what’s my motivation here? Because you know, you think about your family, you think about what you could do with the funds you think you think about is this mean that they’re being held accountable? And you know, and then you think about what you have to give away. And if you can go back into the fight and just be like, detached and say this and it doesn’t matter to you that you don’t that you can’t talk about it then then I then that is really great. I think everybody has to do what’s best for them. Yeah,
24:22
they last the Kenny Rogers, no one to hold them. No one. Yeah, it’s in but
24:26
it’s intentionally done that way so they can stop the narrative from being spoken about. But I remember very early on there was a woman in Sofia’s second grade class and her daughter had an IEP. And then one year the daughter was gone from the class. And I remember it was really weird the way she spoke to me about it like I could. I was like, it took me a long time to realize you’re not allowed to tell me you’re not allowed to tell me what happened. And there were like all these cryptic kind of clues being dropped, but she wasn’t allowed to tell me. You know, she wasn’t allowed to tell me that the school if they if they are not able to provide an education that they have to pay for. And she went to a different school private. Yeah, that’s private school.
25:15
I feel like these tools have been used, really by a lot of corporations, the United States. And I think that’s why I feel like that you’re offering money to people, which is very tempting. And to some people, it’s a lifeline. And they really have to say yes. But it’s the same thing for like these Superfund sites and these toxic dump sites, what they do is they have an overwhelming number of children who are in the hospitals for very rare cancers. They come in and they offer some money to help with hospital bills, but then they have to sign an NDA. And so then you’re only left with parents who somehow have family members, or somebody who was able to help them that can carry this battle on. And people wonder, Well, why is it only a handful of parents out there speaking? If this is true, why don’t the other 100 parents will the other 100 parents have been silenced. And they do this here, too. I mean, trust me, it was so tempting after strike of several months, and watching seven years of our savings, which we’re very fortunate that we were actually able to save that much. Because some people are living paycheck to paycheck, many people in our country with the way things are, and, you know, you think about that, and they know that they’re dangling that in front of you. And so for the people who do need to take that money, I understand, I’m lucky enough to be able to say no, and I’m gonna just have a big mouth. And I’m gonna make sure that everybody knows every detail and that this is what they’re doing. And that’s my better way of contributing. They they know they know what they’re doing.
26:43
Because if you would have left Elise in LAUSD, they would have continued to deny her an education and damage her potential and damage her future. Any education, any possibilities, change the narrative and continue to propagate? You know, this story?
27:01
Yeah. And then they would have used her as like a poster child for why children with disabilities don’t succeed in school. You know how they do that. It’s like, oh, here’s a kid that needs some help. You don’t help them and then you and then years later, you go see, they couldn’t really do it. Could they? Well, if you’d help them, you would have surprised people. Because, you know, are you surprised yourself said, oh, yeah, people aren’t succeeding, when you help them, but they continue to turn that narrative out so that they can continue to do what they’re doing? Well, I
27:31
think it’s really hard because what we’ve actually experienced is, you know, you sit down and you have an IEP, and that IEP is to create the supports and accommodations, and just parents, know what your child needs and ask for it. Those are the supports, that your child will use to access the curriculum. And that includes a bi because behavior, you have to have someone there to keep them on task, calculator, there’s there’s many accommodations, what they’re there for, is to support your child so that they can access the curriculum. And if you think about it in life, look around your life and wonder like, what are all the supports that you use in your every day, every human being has, as Julie puts on her glasses, right? Every, every human being has supports, they will change and try to change that conversation for you, they will try to tell you, and they will try to you know, make these predictions and put these limits. So you sit and you ask for those supports. And here’s the difference. My son with his supports in place is like a B student, a b a, like, you know what I mean? Like because he can because he has someone on task with him. He has the extra time to do his assignments. So he has always been a great student with his supports. And this is a conversation I had recently because at our school, they’re transitioning out our beloved resource teacher. And that scares me, right, as a new person who doesn’t know our son is taking over this vital, vital role in his life. But here 14 years into Liam’s life, I was actually able to sit peacefully without carrying without bringing my giant backpack with me filled with all of my old fights and tell the person in front of me that they scare me. And what I need from them the new person because you scare me because I don’t know you and I don’t know your your your preconceptions on my child. I don’t know your experience with Down syndrome. I don’t know your expectation, because a lot of older teachers, not all of them, but a lot of them have already cleared the path for your child to be a great hugger. And an angel in the class, she’s
30:01
a seasoned special education, she’s
30:03
a seasoned, and that word is a red flag for me, I’m sorry, it’s a red flag for me. But I’m not going to hold any, just like, I don’t want any preconceptions of my child, I’m just going to be honest. And in that moment, I said, I’m going to create a system though, that, regardless of your perception of my child, this system will support my child, regardless of your opinion. Those are the accommodations and supports that are in your IEP. And when you think about it doesn’t matter if you love the person across from you. Like you said, there’s turnover and there’s change, and people get promotions and things happen in their lives, you create a document, and that document is like, you wouldn’t go to the doctor and say, I broke my foot. And they say, well, here’s crutches. And you know, Abigail is gonna give you those crutches, but then Abigail is not there. So someone just gives you a squishy sock, you know, it’s not like, you have to think about like, what support do you need. I know that sounds silly, but it’s the truth. It’s like, if you have a broken leg, and someone gives you an apple, it doesn’t help you. You know, and so you create that document. And that’s what I am making sure is in place, because that document is the support that IEP is a legal binding document. And those supports, you have to be in compliance. So take compliance into your IEP, you’re being non compliant,
31:28
you hold all teachers accountable, even a school that you love that has turnover of teachers, you have this, this paper, this legal binding document, like you said that you can say, hey, we’re following these,
31:40
this is what we’re gonna do. Yeah, so it’s not dependent on and can
31:45
be scary when someone leaves. But that should bring you some comfort that at least we have in writing the game plan, the
31:53
document and supports are still there. And you may have to develop a new relationship, but the documents and supports are still there. And that’s what needs to be filed. Because the difference with like my son sitting in a classroom without a bi, and without, you know, ascribe to being able to tell tell the story to the person who’s scribing it and then have additional time to type it in, he’ll write a paragraph about the Incas or whatever we’re studying right now, without those supports, without being able his his brain works faster than his hand. So he can’t write it as fast. So without being able to tell somebody the story that doesn’t get documented, take, describe, dictate, describe without dictate describe, who’s going to write it down for him, he can’t I mean, he sat in elementary school, without without that support, even though it wasn’t his IEP, and never was able to participate in science, or classes as such. So that is, the difference is those those supports are actually the things. And that’s what I learned, like I could, I could actually sit across from someone and say, I’m going to take your opinion out of the equation, I’m just going to say, this is the support, this is what we do. And he’s going to be good. But that’s the difference between having an inclusive environment, that’s the difference between because you, but you can still have that system, you just have to really fight for it. And you just have to always be like, on your game you have and it’s it really just stinks to be that diligence on. Yeah, to have to just tell adults how to do their job because parents have a big enough job, like I have enough to do, they’re not coming and making my dinner for me. They’re not giving me meal ideas, how to make lunches fun. So it’s really frustrating when I have to go back and do that, which I did for many, many years. Now.
33:46
I just wrote that down duct tape describe I’m gonna see if that would be appropriate for her in kindergarten, if they would add that on, because I think it could be as they’re going along in the year. I mean, they’re in kindergarten. So they’re they’re not writing essays yet. But
33:58
no, but they are writing things, but they
34:01
are writing and dictate describe I’m so glad like I didn’t even think that oh, maybe you wouldn’t know that one. But dictate is dictate describe is really such a profound tool, because expressive language, and the gross motor skills are developing differently. Right? So Liam can his brain is like, oh, there’s a story and this happens. And this happens. And this happens. But for him to write that down or type it or type it is is a challenge. So yeah, dictate describe, and I think in kindergarten, I think first of all, I know you’re at citizens of the world. So I have no doubt. What’s going to be beautiful for you is that you’re going to say something like I really want to put dictate describe and they’re going to come back here and say, Oh, we’ve been doing that. It’s just not something that we call it support because it’s just something that they do and it might not be dictate describe but it will be other things because that’s what we’ve discovered at cert meetings where I’ll say, Well, this is one of the things that I want, like you said with the bathroom. Because it’s an inclusive environment, because that’s just the way they think. It’s really like what they are already doing. And what’s really, I don’t know if you’ve experienced collaboration yet. But like that was the first time like, when Liam transferred for the end of his fifth grade year, when they’d always say, Thank you for collaborating with us. And CtbC will say this, yeah, so you see, WC, nobody ever thanked me for my emails. Nobody ever thanked me for my opinion, or my requests before
35:38
I realized that as much information they can get, you know, is going to benefit the child. So you know, and
35:44
they really celebrate that you’re participating, because they acknowledge the fact that you know, your child better than them. Yeah. And that’s, that’s something that I would bring into my IEPs in the past, so that, that tool works if you’re an inclusive environment, because you’re collaborating with people. But if you’re in an IEP, advocating for your child, just to always know that, you know, your child that you know, your child, you know, your child and, and they, they’ll tell you, time and time again, we have too many students to know every student, and the child with the IEP, I just really feel is the child that gets known even less, you know, so use that in your your IEP to just, I want every parent to have confidence, and to just know that they’re doing their best and just really acknowledge that the system is broken, and that they’re going to try to make you feel like it’s you, they’re going to try to make you feel like it’s your child, they’re going to try to tell you that your child can’t. But I mean, I don’t even have the right and knowing to tell you what Liam will achieve. Because as high as that bar is, as much as I believe him, he is always showing me more. So I just stopped saying like this, but I want all the supports, and then he’s going to show me like Sofia is going to show me, but I stopped just thinking that I know what his cap is what I know what he’s going to be able to do, because I know that he will do even more than I can see if I allow that.
37:28
Will you say that? And I think of messages we’ve gotten about about bathroom. I mean, you kind of bring it all together. People really concerned about about that, especially that transition from TK to kindergarten or kindergarten first. There are accidents with the typical population of kids in a school setting when it comes to the bathroom. But there’s a pressure that our children have to be perfect. Before we make that transition, sometimes that diaper to bathroom. transition happens a little later for our children sometimes. And we want to talk about confidence. Laurie really showed me something in kindergarten, I think it
38:10
was well first it was pull it we wish them to pull up pull ups, I’m
38:14
sorry, pull ups, I think of just some kind of aid. They’re like, you know, and but it was like, a day that Laurie just said, you know, I’m going to be confident in my decision here. And Liam, we’re going to have a discussion, Liam, you’re going to wear this underwear. And I think maybe we were you’re gonna know over the over the pull up for a little bit. No,
38:36
I said he knew he’d been potty trained. He wore pull ups. And I said, You know what, we’re just good. Because what what started to happen and just know this, that because he had a pull up on, no one took him to the bathroom because they were like, No one asked him. So here’s the thing. And my IEP. Liam can go to the bathroom. So I have to write ask Liam. Because I mean, I can I here’s the thing. Any parent will tell you, you’re leaving to go somewhere. We’re gonna go to the mall to the grocery store to Aunt marches. House. Anybody have to go to the bathroom? Not right. You get in the car, you drive for 10 minutes. How many? Can we stop? I have to go to the bathroom. I’m hungry. I need water. This is a neurotypical developing brain. And like Steven said, but Liam, he was supposed to be different. He was supposed to tell you before he was supposed to do everything that whatever the wish list is whatever they wish he was supposed to do. So when he went to and I think it was from kindergarten to first grade when he was in first grade, I was like, oh he’s in pull ups he he’s good.
39:43
But anything that they’re using it as like training wheels where you like have training wheels on a bike but
39:48
your if there’s an accident or hey, there’s a pull up, we didn’t get there fast. You’re actively trying
39:51
to continue to have the child balance without you know, not just come home with a full pulse of yeah, not
39:58
even change the pull up so He’s not been to the bathroom in eight and eight hours, right? So I said, Hey guys, I’m taking them off. He’s got underwear. I’d ask him every hour. Not one accident. Yeah. So they would ask him every hour
40:12
know what you did to his you put you, you made them aware. So they were like, Oh, here’s the thing. If you send your kid to school and you go, Okay, we’re gonna do it. No pull up. We’re gonna do it. And let’s see, he has an accident. That happens to everybody. Right? Every that happens. And and here’s the thing. The people that aren’t get them off these training wheels has to deal with that. Yeah. And all of a sudden, oh, that’s, oh, boy, maybe I should ask him every hour. Maybe I should give him a new AI. Within a couple days. He was done. It was like, okay, he did it the first day. Yeah. But here’s the thing. If he had accidents for multiple days, that happens, like we need to really take that off of us that burden off of us to say, Yeah, Mike, you can have an accident, even multiple days, like until we get it done, right? Not like, Oh, I’m so scared to like, cause an embarrassment or something like, everybody can cover for each other like these things happen. So if you had an accent, nobody like, you shouldn’t shame that child. Right? Well, they did. That’s why I corrected what I was in mid sentence. She was no, we don’t have to go. But a child should not be shamed when the right should be supported. Any child. So let’s support our children. Right? Because when
41:24
you when you’re saying the child shouldn’t be shamed. Why is the child carrying the burden? When we’re all adults who have been potty trained, for the most part? Right? I think most adults will push it and be like, eff go the bathroom, but I’m going away. And that’s really bad for you. But the teachers are the adults, the BI and also, if they’re fighting you for BI, right, there is a reason. You know, your child needs support, your child needs support, to walk to the bathroom, your child needs support, because of their expressive language is coming is not as coherent to everyone. And I don’t know all the adults at your school, and I don’t know all of the children at your school, and safety and accountability. And I just want to drop that once you tell them something, and then you say, so if you choose not to now you’re accountable, sometimes that will make them go. So we’re also record all your IEPs. Because once you tell them what your fear is, if they decide not to then support your child, once you tell them your concern, they’re accountable. But they need to be accountable for like, not paying attention to your child, not asking your child if they have to go to the bathroom, not making your child because that’s what you do for the neurotypical population. And the child shouldn’t be embarrassed because how many movies are made, where they talk about Hey, Sam, you were a bed wetter all the way till High School. That’s like a thing like that happens. kids cry when they have to be separated from their parents, kids get nervous kids pee kids, the reason why they have a drawer in the office filled with underwear and pants. It’s not for the population of children who have IEP s because most of those kids bring underwear in their bookbag. It’s because it’s a thing that happens. It happens. And I think that’s like, those are accountable.
43:29
And we’ve talked about that LAUSD, it’s very hard to hold them accountable. Because they have basically a huge bank account that they just, you know, pay people off. I mean, if you get down to it, but when you when it’s like, real. When the blank hits the fan, literally almost you like say, Hey, we’re gonna do this, and they’re pushed to like, okay, and we’re gonna do it. They have that bathroom scenario, I just see, it seems like you’re really, you’re really holding them accountable. Like we’re gonna do we need to do this together, or it’s way more work for you. Let’s, let’s do it. And that’s how you motivate people to do what they’re supposed to do is, yeah. So I just want to take 10 minutes to talk about that, because there’s a lot there were a lot of questions.
44:12
A lot of people get really, I think a lot of parents and I know that I can think back. I think that’s why when Liam went to school, and it was like, no, he’s, he’s, we’re done with pull ups. Here’s his underwear, guys. He’s wearing underwear, take him to the bathroom. Right? It probably had
44:28
multiple aides around him at all.
44:33
Right. So I think that I did my work on my end, and it was first grade and he was seven. And you know, that was the year they didn’t support him and give him his accommodations. So I don’t know. But for me, there’s so much that parents hold on to there’s such there’s so many things that we don’t have to and I feel so fortunate that Liam was our second child because the Convert Ayato eyes have this conversation with Sophia all the time. If I didn’t have Sophia. I wouldn’t understand how neurotypical Liam’s behavior is, how these milestones unfold how this is, oh, this is exactly where Sophia was at the same time. Oh, he’s 13. Right? So this stubbornness isn’t because he has an extra chromosome. It’s because he’s 13. And this is what his brain is doing. And these are the boundaries that he’s pushing. So I feel very fortunate that I have Sophia that went ahead. So I have kind of a playbook even though every child is a different team.
45:46
If you don’t have that, look at the classmates. And you see, like I’ve said multiple times, many reasons that Liam should not be modeling off of these kids. I mean, there’s just, it’s just typical activities that kids do. They just mess around the pull each other’s ponytails, they do like me, this is just what happens. It’s just that when Liam does it, it’s like, brought up and, and it gets magnified. And then the parent
46:14
was on that, but not it. Yes. I just want to clarify that it’s not what we experienced now. But know when you’re in when we were in the Leu, USD school system, it because it changes, right, Julie, it can, it can change how you feel about your child, it can change what you think about your child, it can change at a stress, it stresses you out, it can cause you fears. It can it there’s there’s so many things that it’s just really unfair. And we don’t know, because when our child is born, and then we get these, this, this added information that isn’t ours to carry, maybe the past, hopefully, people are getting more great stuff now. And we’re constantly but there’s not a point that we actually stop. Like, we don’t get to stop, like the first time Steven and I got to stop was when we pulled Liam out of that school. And we were able to stop and check in and be like, Oh, my gosh, we were so stressed, we were so damaged. We were fear ridden, we were overcompensating where I mean this, all of these things that we didn’t even realize that we had been carrying, and they start to come up, and I’m like, what is that? What is that, and I had to identify each one and then let it go and acknowledge like, oh, my gosh, what we just went through, it’s like, you, you, if anybody here is a marathon runner, you run and those last two miles are like how, and you cross that finish line, and you’re fine. But then when you take off your shoe, you’re like, I’m not fine. You know, my out. And that’s really what it I don’t want to compare it to a fight anymore. It was more like a marathon. I kept just like going up the hills, I kept like, just pushing myself and pushing, pushing my whole will. And when we stopped there was all this damage had been done. And if and if I can help anybody not to not to incur some of that damage, to, to believe in themselves and to, you know, to check in and and take that time. So they’re not carrying all that stress, because stress is so bad for us. Yeah,
48:38
you’re unpacking trauma. Yeah. I think this is a good topic to talk about, too, because I see this a lot in IEP chats where people with the young kids coming up are like, Well, my kid is in diapers. And I’m being told that they can’t come to the school. And people are spending like No, legally they can. And I think that’s important for people to know because when we did our transitional kindergarten IEP Elise still was in diapers. And yes, you can you can send your kid they’re supposed to change them. The month before Elise entered kindergarten, I did kind of what you did, I’m like, maybe she can do this. And I’m just not like being confident and having stick to it and vividness and so I just did it. And it was easy. You know when they’re ready. It’s easy. That’s what they say if it’s if it’s a huge challenge that’s traumatizing for the kid is traumatizing for you. But she did it and I didn’t say to them if she says she doesn’t have to go just take her anyway. And at least came home at the end of the day and she had an Austin Powers bathroom break. I mean like it was like ongoing and I talked to them about it the next day and they said oh the one on ones that oh she she said she didn’t need to go. In all fairness This isn’t person knew of being a one on one. She was a time Hurry. Well, they were hiring in new, permanent one on ones because they have their own one on ones that CtbC she was a really nice person. I really liked her, but she’d never had kids. And so you forget sometimes that like when when you’re going, it’s okay to say, if she says she doesn’t have to go to her, Well, we’re gonna go anyway. And that’s what they did. And she went, and it was not a big deal. They were they were like, Oh, of course. And they apologized to me. And they were like, I’m so sorry, I can’t believe I didn’t. I just didn’t. I’m like, It’s okay. You’re new at this, you’re learning. So that’s the nice thing about CtbC is I do feel like if there is something like that, it’s not about intent. It’s really just about a learning curve, too. And it’s okay for parents, like you said, not don’t feel guilty. Just tell them like my older daughter had an accident, but she’s gonna not talk about this, but just recently, and she was like, Mommy, I was on the playground, and I was having so much fun, and I couldn’t stop. And then he started laughing. And I was like, okay, just so happens. I remember that for myself. I remember, you know, when you’re old enough, you’re like, Oh, boy. But um, yeah, it’s okay. And your kids can go, if they have, they’re in diapers, or if they need help in the bathroom, because at least still needs help, because of her low tone. And she’s small, she can’t get up on those toilets without help. So she can go by herself. But she still does also need help with cleaning herself up after dedicating, you know, because again, like that low tone comes into play, and that’s okay. And so I think it’s a great topic for people just to know, that’s okay.
51:26
I wanted to tell you, like, when Liam was at Carpenter, one of the things because, like not being big enough for the toilet, you can, here’s an accommodation, a step for the toilet. Yeah, that and they put it in a different bathroom. So like, it could always be there. So he wouldn’t have to like, go, and but they had, they put a step. And so that way, he could actually be able to sit he was little. And you know, when you say about defecate to go in number two, like, and that was a big thing about her being able to wipe, that’s a huge thing. And again, I’m glad we had Sofia, because Sofia had to learn how to wipe herself. Right? We have, we have to allow our kids and then finally one day, and I think I was talking I might have been talking to you. And I said, if I get a couple pair of dirty underpants, because he’s learning. That’s fine. That’s what we do. Because that’s how as silly as that sounds, like a parent or guardian of a neurotypical child would never like look at a poop stain in underwear and think that they had failed. They’d be like, That’s a poop stain. And they don’t just happen in elementary school, right through some wet wipes. And is back to that. Yeah, they were? Well, we did. And when that was another tool that we gave was some wet wipes, because that’s a little bit easier, not the wet wipes, they have flushable wipes, but then you have to tell, and this is what I take into the eyepiece, because then not anymore. But I had to take it because I was like, Liam you could only use to break the toilet. Right? He used to. So if he can take that instruction, then you can say, add these two and put it in your calculator, and hope it like there’s no difference he can he can do that. And if your child isn’t there yet, just keep holding the bar up there. And you know, they’re gonna get what they can get. I’m not saying like everybody is different every like, my education is different than Stephens education, which is different than Julie’s education. Our abilities are different, our skills are different. Our gifts are different, but but because your child’s gifts, all of that happens, and you have an extra chromosome shouldn’t come with this. Wait, you know, and, and I remember the day that I said, you know, I’m just hey, you know, what, if there’s some poop stains in his underwear, I’ll just make sure you know, you treat them you put some put some extra detergent there. And that’s just what we do. And then, you know, maybe there’s, well, how can I support him to change that, hey, take your time, Hey, how are you doing? And I would help him wipe. Then it got to the point that he’d always be like, Mom, when I had to come into it when he went to the bathroom, and then so I would help him and then sometimes I started to go, you know what, I think you could do this. And then sometimes I’d say I’d help them and then I’d say, Oh man, you did a great job. You got this. And it takes that transition because it’s okay for us to support and we will continue to support all of our children for as long as they needed any child. Any child. Sophia, you’re going to college you can come home whenever you want. Whatever you need. Yeah. Do you need your laundry done? Do you want me to pack your lunch, I send gift cards to my friends kids who like, you know, go get yourself a coffee, go get yourself a real meal. This is what we do. This is what we do for people that we love. And it shouldn’t be any different if your child has an extra chromosome supports
54:53
and no shaming and no shaming, shaming to the parents
54:57
because I’m gonna say this as an adult. If you have never had an accident, then maybe you don’t have insight to it. But people have accidents. And there’s a reason they have adult diapers. So, and we don’t go around. Do we go around shaming our elders? No,
55:13
there’s jokes about spouses do another. The other spouse is laundry, and it’s like, come on out. You know, it’s
55:19
a real thing. Honestly, they wrote a book saying everybody poops. There’s somebody wrote a poop book that you put your bathroom that says, document the kind of poop you have people have like, yeah, so it shouldn’t be like, I just, I don’t want, I just don’t want you have to carry all this crap.
55:38
That goes on
55:40
this episode. Yeah.
55:44
Crap, you know, but it’s the truth. And there has to be some like, man, there’s a there’s a parent at my school. And there’s a habit that her child has, and this child does not have Down syndrome, but there’s a habit. And every time she comes to the gay and she’s like, she asks a question. And then she says, well, because they like to do this thing. And I just see her. There’s so much guilt, there’s so much shame, there’s so much weight with her saying this thing that this kid does is not a big deal. It’s things that kids do all the time. And I’m sure there’s lots of other kids that do that same thing with a different intent. Like, it’s like, and their parents aren’t at the gate going, Ah, you know, and, and I just want us to be able to understand that every life is this journey. And we don’t have to carry what’s not ours. And I just want to make the journey. I took us a while and we still you know, it’s still unfolding life is still here. So we are pleased for
56:42
it. But also you can take this conversation for the future for your female child when they’re having their cycle. So no shame, no
56:50
shame, you know, and I’m glad we had the conversation about pool because that’s like, the saddest conversation that I see on the message boards, because I see how much it weighs. I see how much it weighs. And stigma. Yeah, there’s a stigma. Or they’ll say, you know, like, I just remember this one where this person was so upset because their child had had an accident and then taking the poo and wiped it on the walls. I don’t think that like first of all, I don’t know about you, but going to the bathroom is weird. And when kids first start going number two, like you talk to your pediatrician, like, we have to take that same compassion with our kid that might like maybe like later than you would expect is having this feeling of I don’t know what that is. Or, honestly, behavior is a reflection of different things. So stop and ask like, was there something bothering them that would make them do this? Because there’s they still like a kid wants attention, good or bad? Right? That that is a milestone,
57:58
now and that’s also a sign that can be a sign of a child going through sexual abuse to I mean, that that’s a totally different topic. But it could not be. It couldn’t be like you said a kid just like learning and being curious and not knowing. But there’s other reasons kids do stuff like that, too. If that was something that were new and not seen before, and the parent felt like something was off, I would suggest that they not ask any leading questions, but maybe have somebody asked them some open ended questions to make sure there’s not something more going on, especially if it’s very often they won’t, they won’t talk about it. They express themselves in ways that are very intimate and showing that they’re calling out about distress. That’s a totally different topic. But that’s a totally different conversation that needs to be had.
58:44
But But what it what it stems to is that we need to support each other and that we’re humans, there’s, it’s not like we’ve never heard of this happening. I’m involved gone into some kind of, you know, gas station restroom and been like, what the heck, and we know adults are in there, but I mean, like, stuff happens. And so you just have to like, talk and communicate and but it’s the it’s the shaming part. It reminds me of this whole thing, which I actually had discussion yesterday with someone that had no idea that this happened. And I was a bit surprised, but they’re not really on social media much. But there was an incident where it were no accident. Well, it was you a couple of days ago when I talked to you about this gentleman who had a complete mental breakdown at the Bass Pro Shops. It became a funny thing on the internet. People were mocking him that he had got he drove his car and wrecked it outside of the Bass Pro Shops went inside. And this is a time that you that people will giggle but he took his clothes off and swam in their big big aquarium and had a whole breakdown and then fell out of the aquarium hurt himself and the cops came and showed him no empathy. Just basically hogtied. dragged him out of that place. And we can understand that this gentleman can look back at this moment that, unfortunately was documented, you know, on someone’s phone and then put on the internet. He doesn’t want to be the guy that wrecks his car outside the Bass Pro Shops, you wouldn’t be the guy who’s swimming around naked in a pool, an aquarium. I mean, this is obviously a mental health crisis. And, of course, there’s going to be giggles and smirks and stuff, but to show someone respect by by supporting them, you know, you’re going to have a moment where cops maybe don’t, they’re just trying to get this guy out of there or whatever, they’re not being, you know, they’re not kick loving this guy, they drag him out. But like, can we cover him? Can
1:00:46
we this things to do. And so we make fun of him take
1:00:48
that as a society, and do that for our ones that are learning the most our kids that just to, to support to not shame to understand that we’re humans, things happen. And let’s cover it, let’s cover each other’s back. Let’s have each other six, right, let’s, let’s support each other. And stay away from the mocking in the smoking and making fun of and see how we help somebody that that needs help.
1:01:21
And then I think that when you say those things, but also, you know, this community might be on the other side of the mocking, and the smoking and the hurt. There’s, we could talk about so many things, feeling so
1:01:33
happy keep having you on. We love your insight. I mean, you introduced us to see WC. And yeah, and we’re really grateful for that school. And for it’s, you know, I’m grateful not only for the school, I’m just grateful for their motto and their mission. And I just would love to see more schools do that. But what you can get from CNBC, you can then spread that. And that’ll plant seeds, even if it plant seeds just in a parent’s voice toward their school.
1:02:04
And even though like we’ve had to leave our schools to do that, and leave our district because we felt like we didn’t make a change. We might not change the system. But what we can change is the trajectory of our child’s life with these conversations, because the truth is, there’s no one that can put those limits on your child, your student, except for them.
1:02:26
Thank you guys.
1:02:28
And I always love having you on Julie. I love your insight. We wish your family the best always. And thanks so much for joining us today.
1:02:36
Yeah, thank you, you guys. I really enjoyed being here. And I’m really grateful for everything you guys are doing.
1:02:43
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
If We Knew Then - A Down Syndrome Advocacy Podcast 