Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
0:32
And I’m Lori Saux. And today, we thought we’d do a catch up on Liam, and his end of year at his new school. Our experience with his IEP last year, summer, and then the beginning of a school year. Liam is 13 now, so he’s going into seventh grade. And we haven’t really done one of these catch ups in a while, because, as you know, your schedule gets really busy. And that’s something to talk about, too. I feel like our episodes where where we are able to interview people and get those on schedule. But the truth is, is when we’re just going to talk or there’s some ketchup to do amongst ourselves, sometimes that goes to the wayside. Yeah. So as I say that, I think you know, how important self care is, how important it is to check in with yourself, or take the time to be where you are, and do what you need to do.
1:47
Yeah, I think we never do everything we want to do. I mean, as parents, as humans, it’s probably always a checklist are always things we want to get done. And sometimes I think we put a lot of pressure on ourselves, when, when will when something falls through, inevitably, something’s going to not get done, because we have just so many hours in the day.
2:09
And we’re usually the last ones on our list. And I’ll admit that you’re better at putting yourself on on your own list and doing things and, and to be honest, sometimes they get a little mad about that, like, I just get a little frustrated, and not not mad about whatever you’re doing. But there’s part of me that just gets like I didn’t do this one thing, or my self care list falls to the wayside. And, you know, and it’s easy to get kind of to get bothered to get bothered, it’s just easy to get bothered. And so it’s just a reminder, I always have to remind myself that, what did I just read today, if you’re not changing it, you’re choosing it, and I have the ability to change, I have the ability to create my own schedule. And if I want to read more books, then I can, I can carve out 20 minutes, where I want to read a book and just do what I want to do. And I and I’m fairly certain things won’t fall apart. And if they do 20 minutes worth of falling apart is something that I could definitely recover fairly quickly, depending on you know, if it was a fire or something, then that might take longer to fix. But besides that, it’s going to be okay, like, this is life. This is the life that you’re cultivating. And this is the life that you’re creating.
3:34
On that list of to do’s though I mean, how often would you put 20 minutes of TV time or go? I go for a walk 30
3:43
minutes of my TV time that’s different. Like it’s it’s I mean, how often do do do we pick the movies? How often Yeah, but anyway, that’s like I’m digressing what we what, you know, self care is always the goal. So this is a bit of our self care is catching up on Liam. And updates, because the truth is, he’s been doing really well. We had some horrible years with LAUSD, the Los Angeles Unified School District, we had some really hard hard years and fighting for his education being denied his education. And this year, at the end of the year was his IEP It was now last year we didn’t have to have a lawyer but that’s because we had so many transition IEPs from removing him from his old school. And so even though there was a celebration that we didn’t have to have a lawyer, it wasn’t as big of a deal because everything had been really carved out and he was only in that school a few months. Before his end of year, IEP came up so this His middle school, which was scary. Going into middle school is a whole new ballgame. The curriculum is different. A lot of times there’s classrooms, multiple classrooms, what kids are going through and middle school, that’s all different. And you know, there’s usually a bigger push at this point to now take him off curriculum. Again. And so it was a big deal. And what I found was this year since he wasn’t an inclusive class classroom last year, and he did have supports, and he had a stellar team behind him with an amazing resource teacher who was really great at communicating. And honestly, all of these things were written in my IEP, I requested weekly communications, I wanted a daily communication system, and then a weekly like update system. And that was in my IEP, I was very fortunate that the resource teacher was also very fond of collaborating. And she really did believe in our son and wanted to educate him and her openness to collaboration and knowing what works really am or what doesn’t, and, and have an, what should we try now? It was, it wasn’t something that we’d experienced, I
6:35
think she was as excited about a weekly update as we were. And so when we saw her reaction of Oh, yeah, let’s do that. I just thought that was what we’ve been wanting for so long,
6:47
we actually have a meeting with her today. I mean, she’s that good. It’s the second week of school, and she’s like, let’s meet. And, and, you know, that’s what I hope is happening out there. That’s what I hope with new teachers, and with the conversation about inclusion and diversity, I’m hoping that that’s the new conversation that’s happening. But if it’s not what you’re experiencing, some ways that you can get that is by putting the supports in your IEP. And wanting the communication. And really a valid reason that I always ask for the communications is my son’s expressive language is not where I need it to be, in order to be confident that I am hearing everything from the classroom, you take that and you compile, and you pile on the fact that he’s now a teenager, and that communication naturally diminishes with a neurotypical teenager, but I need to know, is he getting his support I need to know is his teacher, including him in the classroom, and I need to know these things. So I need to be able also to support him at home. If there is homework, I need to know what projects are coming up, what books are being read, I need to be able to front load these things. And so that on on those notes, you can ask for them as supports and parts of your IEP. And then hopefully, you’re fortunate enough to have a team that really is interested in educating your son
8:22
is still a little branch of communication, it’s just making sure that lines are open.
8:27
Yeah, I feel like when we know, when we were a carpenter, it, it became a burden because it was a one way conversation. It was me asking a bunch of questions and writing so many emails, and I know that we all are exhausted from writing email, sometimes, especially when you’re in like, the middle of the fight for the education. And when it feels like you’re against an immovable force, what I will tell you, I didn’t necessarily change the school at all, they continued with their violation of his civil right up until the very end. But what it did was it gave a really nice file. So when it was time to leave that school, there was I really had a nice case was documented, yeah, documented all of the times all of the, you know, lack of support and violations of his IEP. So you may not change the system you’re in but you can create a different kind of support by keeping everything documented the so that way you can you can use it if you ever need to. It’s there because our minds you know, we don’t exactly remember everything real clearly. And, and so if we have it written down the day and the time and just keep a journal keep a diary, I highly recommend it. So the last IEP we had was it In May, to end his sixth grade here. And to go into his seventh grade year, it was virtual, it was virtual, the school reached out with plenty of time, like months ahead of time. And, you know, one thing that I’m reminded to do is, even though things are going really well, you still remain diligent on requesting, if you can record the IEP asking for reports ahead of time, so that you can read them. And for this particular IEP, having that preparation helped in really having the shortest IEP that we’ve had. Historically, it was under two hours, which we, they were in the 20s 20 hours, every year at carpenter community charter, it was like several days, several days going in and devoting our entire day and, and in the quest. So what I was reminded to do was to still stay diligent. And the reason for that is because I’m creating a system with people who believe in my son, but there’s lots of turnaround all the time. And then you want that IEP to be the document that would move with him to a different teacher to a different resource teacher, to a different school, you just, you you want that to that has to be an accurate support, that has to be an accurate reflection of his support. So I still read it afterwards, there were some mistakes, as far as you know, just what happens when you’re entering in a document in, in a system. Some things get written wrong, some things are inconsistent. And you know, when you’re working with a team that supports your child, they’ll make those corrections. And so it’s really delicate, it’s really important to still remain diligent even when things are going your way. And I intend to do that all the way, until he’s out of high school and into college just to you know, have that document to build upon. And also I’m thinking, you know, next year when he’s going into eighth grade, I have something to reference, I have this going into seventh grade. Now, what worked, what didn’t work, what do we need to add? What do we take away? What is he outgrown? But all in all, it was a really fantastic experience during the IEP.
12:27
Yeah, they were, as always, this citizens of the world have always come from a place of knowing our past, knowing how difficult IPS have been for us. But I think knowing that IPs are difficult, I mean, they can be difficult, because you’re trying to set up your child for the best educational environment. And so there’s a bit of pressure on you, you know, once this IP is over, and you’ve kind of locked the IEP. In your mind, you’re like, well, oh, that’s it. Now, this groups pretty good, where you could go in and make amendments. And you can always do that. But the pressure wasn’t as intense as before. But I know parents out there may feel the pressure. And we know
13:12
what parents can feel from an IEP. Yes. And I think that I think that’s the difference is I know what’s out there. And I know it’s not fair. And it’s really hard, and it can be really exhausting. So as much as you can, I guess, go back to that element of self care. And as much as you can go into your IEP with the facts, with things documented, knowing your rights, and remembering that the burden of proof is on the school, if they want to do something that is just out of the question if they want to do something large, like take your child off curriculum, and that’s called an ultimate curriculum. And that’s not something that you want if they want to put your child in a special day class. And that’s not something you want if you want inclusion, and they’re telling you no, that is your child’s civil right to faith and idea. And if they’re going to do anything other than those things, if the burden of proof is on them, to tell you why and to prove why your child should not have his rights upheld. I can remember because it wasn’t that long ago how exhausting that fight can be and I can only offer your you our support and we can give as much information and help as possible to help you through that. If it is a challenge to help you through the challenge. There are supports out there there are so many different agencies and advocates that you can take advantage of And I highly recommend always going into your IEP, if it’s not a great situation, if there is, if you know in your gut, then go in and have an advocate or lawyer at your side. Last year’s IEP went really well for us in in record time. And, but we didn’t go into it without fear. Like, it’s still we still have that like lack of trust, it’s still really hard to trust again, even going into the school year, it was, it was really hard, like, I trust but then there’s this thing that I’m working on letting go, where I trust, but then I’m like, I guess it’s I’m aware of what could happen. I’m, uh, I’m just aware. And I and I, and if I look at it, it’s just being aware, then it’s not a detriment. If I give it any power and let it be a fear, then it can really start to eat away at me.
15:59
Well, there’s things that that this group of teachers that I trust, will say, and just for a flicker in my mind, I’ll I’ll maybe doubt or I’ll think, why are they saying this, like the old school to set it, you know, like, even just making us feel comfortable and things they would say at an IEP are they making me feel comfortable, like the last school just to kind of simmer me down or to catch me off guard, or what they’re really doing is trying to make me feel comfortable in this situation. So we can all knowing our past, you know, but we can be gun shy, it’s just like, if you’re in a relationship that all of a sudden you find out this relationship person was cheating on you, and they were abusive, or whatever, you’re gonna go into a next relationship conscious of what your past relationship was. And it can cause you to maybe not trust or to doubt, or to tiptoe into a situation and really double check and to not
16:55
be in the moment at hand, but to be in the past. And that’s really hard. I think that’s hard. I think it’s just hard. It’s hard to do. And the truth is, is it’s not unsubstantiated, I mean, our experience with it for your experience with an elementary school to be a toxic experience, to you know, to have to have this fight it, it, it opens your eyes to things that most parents don’t, they just don’t experience. And so, you know, my hope is just that parents can get through those challenges intact. And with support and knowing like now, as parents, you have so many different places to find examples, like when Liam went into kindergarten, and they said, he’s not going to learn to read, and, you know, take them off curriculum. Now, he should never be held to the same standard as other students as his peers, and these and they refer to these kids, and all of that all of those really bad things that they don’t, words they don’t use with any other marginalized group. You know, if I had go to Ruby’s Rainbow, there’s lots of examples of individuals with Down syndrome, going to college and receiving their scholarships go on to best buddies, and there’s a breakdown historically, of the journey of individuals with Down syndrome, and some of the challenges and you know, your rights that have been fought for and when you acquired those rights, and, and go to these other resources, and you can go into your IEP, and when those teachers who teach those archaic beliefs come at you, you have, actually, the real facts you have the reality you have the moment and not the past. Because the past is not based on truth. So let’s move on to the now which is about inclusion and diversity for all in and have a longing for everyone. So it was a good end of his sixth grade year, he had he ended the year with friends. Yeah, he ended the year with great marks
19:26
on his report cards, amazing math is still a challenge, but with supports
19:29
like they they’re going back and teaching him the fundamentals, which were never taught to him. So they’re teaching that on top of teaching him the the current curriculum with the, with the supports that he has, and you know, that’s one of the areas that I always like, communicate, and I’m very on top of math, and I’m always like, I appreciate him learning this, but let’s make sure that he also has his supports because the truth is with their inclusion, they’re teaching him like everyone else. And I just want to remind them, I’ll be like, okay, but let’s make sure Liam is comfortable, and has his support at hand if he needs them. And that’s a way that the communication helps, because then they always say, oh, yeah, they’re there, as well. But we just really want him to understand what he’s doing because they do teach, because they want kids to actually learn and know. And so they’re not just memorizing things.
20:28
It was a great end of the year. Really nice.
20:31
Yeah, it was it was, you know, scary going into summer. He had, but he had, he had friends. And he liked his school year. And it was the first year of middle school, which I don’t think that we could say that about Sophia. No, she wasn’t, she did not enjoy. Summer, we we did put summer school into his IEP, which we were, again, we were hesitant, because we didn’t know what it looked like, I’ll be honest, most summer school programs are not inclusive. And because they’re not inclusive, they don’t. Our experience with the summer schools that have been offered have been very low bar, not really continuing the education, but just
21:17
definitely not the level that he is in the general classroom.
21:21
No, it was a lot of except for the one that they did during COVID, which was integrated. Then they gave some things and they tried to push him out of that I don’t want to go back. But they tried to push him out of that and put him in the one that just talked about field trips. But the integrated one that was an inclusive classroom, did offer education, and supports that just continued the skills.
21:48
But even though this summer school wasn’t inclusive, it did. One advantage I saw was that he would get a lot of resource out of it he would receive
21:57
and the reason is non inclusive, meaning that all the students had IEP, yes. Right. That’s it like not every student had Down syndrome. But so it wasn’t, it was it was just so individuals with with IEPs. And that’s, you know that and so in that way, you’re saying it’s a non inclusive classroom?
22:15
Well, sometimes it feels like, like what we talked about the special day class, which can be really good for a lot of kids, but
22:25
I don’t I don’t think that for middle school that it was because I could be school didn’t feel like that for the middle school, summer school and Emperor citizens of the world because it’s different, because they’re because I think that it’s because of they’re there to teach. And so instead of it just being something to kind of what felt before with the Los Angeles Unified School District have been more like babysitting.
22:49
Yeah, well, that was my fear of the summer school, I guess, that he was learning be where he wouldn’t learn, but, but in my mind, it was at least he’s gonna have therapies, but ended up being where he did have his speech therapy and different therapies. But also, there was a curriculum that was a good prep for seventh grade.
23:11
Because what it should be, is keeping those skills fresh, and keeping them at hand. So I think it’s what is really good for any student to take summer school, or to have a little bit of that refresher. And that’s why they use the first couple of weeks of school is for a refresher, but this was so you know, for two and a half months, he doesn’t go two and a half months without some kind of instruction. So it was, it was the first time that I actually felt like there was some purpose to the summer school. Like I felt like there was, but that wasn’t his whole summer. And you know, it was really, it was a hard choice to make, like, do we just do we doesn’t, why does Liam have to use some of his summer, you know,
23:57
wake up early,
23:58
wake up early, and, you know, going to school and doing that, but it’s still summer school. So there, they did make, you know, there was some fun stuff, if you could, I think back to I believe when I was in elementary school, I went to summer school. There’s some for something fun to do. There’s some insight. But but there was, but you know, it was a hard decision. Because I feel like Liam is always working harder than the next guy. Harder than most people is held to a different bar. His how he’s held sometimes to a very low bar by other people, but by a very high bar by the people who believe in Him, which would be mostly us like the he doesn’t necessarily get to just goof around all the time. There’s, I think, being the second child, we’ve learned from Sophia, and so he gets away with less just for being the second child but then also just knowing that You know, hey, here’s this opportunity where we can continue to work on our skills. And I know that especially at this age, it’s really going to impact him. And it was a hard choice. I’ll be honest, it was made easier because Sophia got a summer job. So. So that made it easier because then they both had something to think to do. But just like Liam structure over the summer was good for him. It’s the same thing with Sofia, it’s like having a little bit of structure for a short period of time, not the whole summer, just like a little bit of structure actually helps like you can work on different skills. You know, Sofia had different classes that worked on different skills. And so finding that balance for her, it shouldn’t be any different for Liam, Liam should have structure like he shouldn’t just sit and be, you know, be on his iPad for two and a half for two and a half months for your eight weeks or however long it is it’s that shouldn’t that’s not going to do good. So he didn’t appreciate having to do cello. But he did his cello. He didn’t. You know, actually, I don’t think he mind it. He really actually like a cello. Yeah, but having that structure is good. Like, utilizing the time when I told Sophia is we’re going to have a fun summer, but let’s utilize the time doing things that we can’t do during the school year. So what are some of the things you’d like to do? What are the what are some of the things and then let’s take that and spend our time, still creating the life we want. But doing the things that we can’t do during the school year. And I don’t think I don’t think it should be looked at any different just because Liam has Down syndrome. I think it’s the same thing. Like, you know, you’re gonna have fun, we’re gonna we’re gonna plan these weekends, we’re gonna plan these days that are just like, fun the whole time. But let’s, let’s do other ways that are, you know, let’s cook a meal. Let’s go to a museum, let’s, you know, do something that has structure. Let’s wake up. And honestly, going early to the beach was was fun, because you’re still waking up early. You’re not like sleeping until two. But that was something that I think we’ve been challenged by before holding lamb to like a different bar. You know, especially over the summer, like I remember our trip to the lake. And we brought his schoolbooks. We did. Yeah. And he had to do math. No one else had to do that. Yeah, to do math. And he had, he had to do math and art and read. And I was torn, because part of me was like, we didn’t do it. It was only like, a couple hours or Yeah, yeah, maybe like a couple hours. And we all did the art together. But But I don’t know, it just felt different. When we make Liam do it. Like I I wrestle with myself, like, am I being too hard on him making him do this. But if it was for Sophia, like we wouldn’t like it’s just like, we’re just going to do, we’re just going to, you know, read a book, like there’s the library has summer reading books, they have all of these things. And we just don’t question it when it’s for Sophia. But when it comes to Liam, I think I just doubt myself so much like, you know, am I doing this? Right? Am I being too hard as the you know, I don’t know, it’s just like a bunch of doubt,
28:18
which, like I said earlier, that’s something I think every parent is going to experience. But I just have no doubt that when you have a child with special needs, and you’re advocating for them that it puts more pressure on you to do it, right. I don’t know.
28:37
Have to be there though.
28:38
No. I mean, like I’m, as I’m saying, this, I’m going, that’s how we feel. But there’s no reason to feel that way.
28:46
What makes it the pressure I because I know that if I’m if I’m really like true to whatever the moment is, whatever the moment is, like if I think of any moment that was was pressure. I remember when we do cello, and you know, first he’d resist right? And or he didn’t want to do it. But and and I’d be just like overwhelmed. Like for some reason, this is something I have to do. And I know with musical instruments, like I’ve talked to my friends who used to take music lessons, but then I have one person in mind that she was so mad at as an adult. She was so mad at her mom for letting her quit piano. She was like, Why did you let me quit? On this side of parenting? You know why parents let you quit? Because it’s like, I can’t fight this fight. I can’t. It can’t mean I always say that. It can’t mean more to me than it is to you. And so I know that like hey, if we just let’s just do it. But this summer, instead of it being on the outside, I think I picked up the guitar and then we played together and he had fun and it was fun. And the pressure was gone. And I was actually having fun as well instead of being like okay, c d A g long note, not short note because he’s having fun. So he’s like doing like Darth Vader themes. but it was more fun like when I joined in. So I think it’s just, I don’t know, like, Oh, do you ever find? Like, do you ever? What makes you let go of that stress? What makes you not stress but I think parents in general, always have that stress. As long as it’s not different. Just because there’s a chromosome as long as there it’s not. It’s just like that. It doesn’t have to be different. It’s just that what comes with being a parent and loving someone so much and that responsibility of giving a foundation to life, you know, yeah. I think he, he got to you. One of the things that we are, we always would fight in the IEP is because they’d say, Well, let’s let Liam show us what he wants to learn. Yeah, we would just laugh. It’s like, what do you mean? You’re gonna let what other student are you going to let show you what they want to learn. So I guess I just keep that in the back of my head is that I’m putting things out there for the best that are really good for him that you know, but Sofia learning the violin, it was about Sofia learning violin. Me I look at Oh, he’s grasping the, he’s grasping the bow. That’s so true for his his hands. It’s like, we’re going to do the short notes. And that’s good for these muscles, we’re going to do the long notes. And that’s good for these muscles. He’s sitting up straight, he has to hold the weight of the cello. There’s so many different things that go through my mind. And I’ve come to realize, I don’t think that’s a bad thing I don’t like I used to judge it and long for the carefree day that that existed only in my mind, because there’s really not much about parenting. That’s carefree. And, but I longed for that like dough to be carefree. And for it only to be cello. Well, there’s nothing carefree about cello. Anyway, there’s nothing carefree about, you know, getting your kid to play an instrument, unless they’re virtuosa that it’s just like, give me that instrument and let them unless they’re Yo Yo Ma. And they’re like I all I did was play cello. You know, for 810 hours a day, I slept with my cello, unless they’re that kid, you know, they want to go outside and play baseball and not read that book. They unless they love books, you know, and then it’s getting them to put down the book and go outside and play baseball. So I think just cultivating a balance. And that can be hard because you don’t want to give up. And it happens with it happened with Sophia too. Like if you say okay, well, let’s go do that. And then there’s like a no, I’d really. Oh, I’m so sorry. I made that sound like an option. Like and, and you don’t you feel like when Liam resists sometimes your first reaction to his No, it’s like, okay. But then you’re like, No, no, no, no, no, no, no. And, you know, their supports that have to be there. They, like, I understand having the resistance when you’re in the middle of something, and someone just says, Alright, come on, we’re gonna go do this. But if, you know, you say, hey, in 10 minutes, we’re going to put that down. And then then we’re going to do this and give him his list or before I give him his so I have to think more, I think I have to think more, and I have to be more prepared. So before I hand over the iPad, I say, you can have it now. But we’re gonna stop to go for a walk or play the cello or whatever it is, I have to think ahead of time. And that’s not always easy.
33:31
Now, as you get to make the plan, and you’re involved in the summer, too, as a human, as an adult, you’re you have a summer to you know, I mean, there’s things you’re going to do or not going to do or when do you make, like the self care becomes, those little moments can get swallowed up and go, Oh, yeah, no, I can’t do that for myself. I gotta keep scheduling for them. So it’s this balance. It’s that it’s that circle though that like we keep Is this the right way to do it? And oh, maybe it is. Let me try this way. I think we
33:59
need an IEP for the summer. Like we should make our
34:03
own IEP for the summer that we have to follow.
34:06
Just like what supports need to be there. That actually that might be that could work. But it was a good summer there was I think it was a really good summer.
34:16
It was for Sophia too. It was a good and they had a good time together too.
34:19
But it was really kind it was really mellow with a few you know, fun things planned in there, but we picked a few skills to work on. We picked a few things to work on. Some things we could have done better and been more disciplined at working on them.
34:36
We worked on stairs I remember doing that that was pretty fantastic to see his progress and the stairs we have stairs in our newer home and it’s a good workout for him and it’s also difficult for him to go down the stairs. One foot on top of one foot on a stair and then dropped the next stair with with his other foot. And we worked on that alternating yeah all donating, he’s able to do it going up, and he does it all the time going up. Now it’s not that a while yeah did take
35:06
a while, because it’s harder.
35:08
It is harder. It’s
35:09
a lot of core strength.
35:10
But he did well with that. And it wasn’t it was, you know, at first he was like, I don’t really want to, I don’t want to do this, but who it’s like having a trainer, you know, it’s like,
35:18
I don’t want to do it. Yeah,
35:19
I don’t want to I don’t want to go do that. But you have a trainer that said, Well, this is the time to do it. So. But yeah, there were a lot of good things. And there was a very good, productive summer where it was a nice balance of work and rest.
35:33
I found out that, and people probably know this. But I didn’t really put two and two together that that core strength that you’re building doing the exercises, is needed for speech. So that, of course made me more exuberantly behind doing the stairs, but also adding yoga to his schedule just to get his core. Because the expressive language can still be challenging the expressive language like having a solid voice, like not every word is supported equally. I think that is our our goal is to do more yoga to get that strength around his abdomen and his diaphragm to help with supporting his expressive language. When speaking.
36:23
I was just thinking that how we ended the summer with
36:27
the hurricane?
36:30
Well, no, no what the school given Liam a little advance into the new COBUS Yeah,
36:35
so in our IEP, we also we also put that because he’s at a new campus. And he also has new teachers, and he, they’re working on independence and so to, to, to cultivate independence, he had a wonderful bi all year, which we absolutely love, who’s a great support, and really helps with the academics as well. And but so that he is more independent, because one as a middle schooler, he wants independence. He doesn’t want to be around an adult all the time. There’s certain things that he can’t cultivate in his friendships, if there’s always an adult. So this school, again, citizens of the world is amazing at having that conversation. And actually, they’re the ones because I don’t know if I’m ready for his independence. I don’t know if I’m there yet. Like, I don’t know if my trust is there. But they’re like, look, we we want to really cultivate his independence. And I really believe that the goal is, by the time he goes to high school to not have a bi, which I think totally, I think is amazing. For for certain things, I still want him to have like somebody that is, you know, is there with him. But we’ll see when he gets there. That’s the That’s the hard part is living in the moment. And not going like what high school? Yeah, no, I want him to have a be I don’t know if he’ll need it like so just to be open to the possibilities of maybe he does, maybe he doesn’t it’s not my concern right now. But right now what’s really great is to see him cultivate his independence and to have a conversation, to be able to do it in a way that supports him and to creating a healthy and Supported Independence to where he’s getting there. on his own, and he’s able to make the decisions, and then they just slowly pull away. So one of the things were that he’ll have to add another bi that will take the place of his original BI for like a period or two during the
38:36
day. Oh, change it up.
38:38
Yeah, change it up. So he’s not reliant. He’s not so light, or on a person. Yeah, you know, so it’s him doing what he needs to do. And I am really looking forward to seeing where he is right now. And to see how he grows by the end of the school year to see what where he that at the end of the school year.
38:59
Just physically getting into school, there’s a lot opportunities, because it’s set up a little differently the the school itself, a lot of opportunities to learn some skills from basically from car to gate or even into classroom. For me, I think of like there’s, we have to cross the street. So we’re crosswalk crosswalks, just making sure we have that nailed down through cars, looking for cars, looking for the signs, pressing the button for the for the walk to come up and then go into the gate and they’re very center open and supportive of of really letting him get into the this large school campus letting him go and do it himself being independent, I mean, following behind a little bit, and they set up nicely where they’ve got like, a meeting area, which is a big blue for everybody for everyone. But it’s easy to communicate to Liam that’s where we’re gonna go at the beginning of the day. So he has to walk a little bit to that, you know, the last school was a much smaller campus. It was basically we could see it and you just kind of walk to a table. But there’s a lot of opportunities there. And it’s I’m really looking forward to, to see, you know, how he how he does I know he’s just always rises to the occasion. So I’m completely completely confident.
40:17
But it’s scary. Yes, it’s scary. And I think that that’s one thing for parents like, you know, these. First of all, when you talk about the crosswalk, I think, you know, I think my fear of his safety is because he has Down syndrome. That’s the first that’s my first guilt thought, right? Like, I think, Oh, am I just thinking, Am I just worried about him in a crosswalk? Because he has Down syndrome? Is that why but no, I’ve seen individuals, neurotypical adults plowed down by cars. In crosswalks, I’ve, you know, like at his at his old school, at Sofia’s old school, there was a parent at pickup that just didn’t look and there was a car that didn’t look and they both met each other. So the fear like I have it for you, I have it for Sophia, big city. So teaching these skills is not because Liam has Down syndrome, teaching these skills are the skills that every human needs to learn, and especially right now, when so many people’s faces are in their phone, you know, you need to teach like, I just like I taught Sophia how to cross the street, don’t look until you know that that car saw you. And these are things but there’s a weird part of me that knows that once Liam understands. And, and I get him to understand the severity of it, that he’s he’s not like, he’s going to understand that and he’s not going to, he’ll be the one going, Hey, what, twice the car to somebody else. And, and I think sometimes, for me, like teaching life skills meant not getting an education, like it was never offered, we’re going to educate your child and also teach them life skills. And life skills is basically like what kids learn. In school, they’re supposed to be learning, they’re supposed to be learning, you know, like socializing and these things. And it’s not easy for a neurotypical student. It’s not these are things, but we don’t separate them out. We’re gonna teach them life skills, because they’re not learning how to cook. And, you know, school, they’re not learning how to wash their clothes, or not learning how to brush their teeth or make their bed. Like when you think of life skills, right? The life skills that they’re actually learning are the skills that everybody gets. But in our case, in our particular case, and I think it’s probably true for other people, it, it was separate from the education. So we had to make a choice. And we didn’t have to make a choice. It was what was being put on us. Like, we’re not going to educate them, but we’re going to teach them life skills. It’s like AI. And so sometimes it holds a weight. And the trick for me is learning that. Oh, my gosh, this is something that everybody has to learn. Everybody has to learn how to hold a fork, everybody has to learn to wait until everybody’s served at a restaurant, eat your food. And I’m not awesome at it all the time. If I’m super hungry, I’m chomping at the bit and I want my food. Like these are things this is just part of being alive. And I just wish it wasn’t separate. And I don’t want other parents to feel the weight of it being separate,
43:30
should never be presented as we’re really going to focus on this life skill. And while we’re not going to focus as much on English, math, science, whatever, you know it that separation is not how things are supposed to go. Because it’s not if it was like I’m doing lawn, we’re gonna teach laundry, paying bills that Sophia up for that. Yeah, totally. But that’s not what we’re talking about when we’re talking about middle elementary school, middle school life skill teaching, you know,
43:59
but when you say it as a being presented like that, that’s different. It’s like, we’re not going to educate your son because he shouldn’t be on the curriculum, but we’re going to, you know, teach these skills instead. And it’s that that’s what I’m, that’s why that’s why sometimes these little things that he has to learn would weigh on me or would have more of an impact or more of a more of a meaning to be more meaningful when if you really look at it, and it’s about equality. It’s about equanimity in everything. There’s there are, there’s speech therapy, there’s occupational therapy. There’s the adaptive PE that teaches like the the, the rules of the game. And there’s certain things like therapy or rec therapy, and adaptive physical education, like those things are maybe different, that not every student gets them. Not every student who gets those, though, has Down syndrome. No. So I just I, what my goal is, is for all of it not to just mean so much all of it not to chip away at us or, you know, hold such a, I don’t know, just to be a burden to become anything other than a gift because to be honest, getting speech therapy, that is, you know, Sofia had speech therapy. And that’s a gift if they need it to get the support to actually get the support. So it shouldn’t, it should be like, Alright, that is an actual good thing, not a gift because it is his right to have the support in his exes curriculum. But it’s a good thing. And I just I just I want to think when you when you talk about like teaching him those, those skills and the independence, it’s just as important but not any more important than Sophia learning independence, I think that the school that he goes to now really does it in a great way that is with ease. Like they look ahead, just like when you’re when we’re talking about making an IEP for summer, they look ahead and say, Well, what do we want when he leaves here? We want them to be independent. So how do we do it? Well, we start here, we don’t just pop it on him, which they’ll do, they’ll do that you’re an elementary school, and then they’ll go Alright, now you’re a middle school, you’re independent, you have to go to every classroom or and the big eyes are not dependable and all of these things, it shouldn’t be like that. It should be like, how are we going to support you to get to where you need to be, which really should be offered to every student is how are we going to how do we support you to get to where you need to be? How do we how do we get you to your goals. We’re fortunate though, that we have a legal binding document that we can actually put those supports in. So if you don’t have a school, that’s awesome. Some of the things to think about are, I’d like my child to be able to get in trouble. I’d like my child to be able to disappoint someone, I’d I’d like my child to be allowed to fail be allowed to fail. Because they’re not like even I think about all the art projects. Like in kindergarten, I don’t know what people were so afraid of like he didn’t get to do his art projects. There was always someone there like making it better.
47:19
Ya know, we’d see the art and go oh, that was made by as big. It was obvious. It was like better.
47:24
Your your art your color matching has gotten really good. Yeah. But you know, like, just to to allow him to be where he is. And I’m guilty of it too. Like I did hand over hand. Sometimes it was more important for me to do the hand over hand. It wasn’t it was so the picture would be more uniform or prettier. That but I don’t know, like, look at Basquiat, what made his artwork so impactful was the rawness of it. I don’t think I ever really allowed him to have the rawness of his actual artwork, because he always like, well, let’s do hand over hand so you can squeeze the pencil because it’s OT and it’s better for your hand and then stay within these lines, because I felt what if he does one picture that’s like, feature like, what what is it going to do nothing. He’s working constantly. He’s constantly working, wouldn’t it have been better for his self esteem to be able to just do it? Yeah, to do it himself. But I will say that I did, it was because I always felt that pressure of if he, if there was anything that wasn’t that that school was always just trying to drive him off curriculum and not educate him. So you know, but looking back I, I, I do it differently, you know,
48:45
that should be written in an IEP, that should be written that your child can failed, they can get in trouble. You know, these are things that you learn from in he talks about life skills, you learn from failure, you learn from making a mistake, you learn from you know, doing it wrong and and then correcting and seeing the or seeing the outcome of when you do something wrong or use you say something you shouldn’t have said or it’s just that’s learning
49:15
if someone’s like if he’s with another kid and a kid does something that upsets him we don’t just move his seat or not have him we talked to him just like well you know sometimes he will we’re gonna set upset you you know, sometimes you do this and you know you upset Sophia? What if Sophia just stopped talking to you after that, you know, we allow you know, have the same conversations that you have with the other siblings and if there are no other siblings, just have the age appropriate conversations have the you know your the parents so you know what is appropriate and works in your house, which is something that I don’t think that we get as parents of children with Down syndrome. We don’t get that same. Well. This is how we do it in our house. Right? And I just want that freedom. I want that freedom. Um, for other parents to have the same experience with supports, though, like I went them, I would have liked to have had not to always walk into his elementary school knowing I was fighting for equality, but just to be able to walk into the elementary school, I have his support, I know they’re going to be upheld. And that’s, that’s it just to have that same experience. And if my kid got in trouble, which my kid never got in trouble, he didn’t get in trouble for hugging when other people hugged him. But he very rarely he never got sent to the principal. No, he was because he liked it so much. But it was never like a real thing. Like, are you gonna send him for like, no, so there was, he didn’t have the chance to, he didn’t have the chance to grow and be like the other kids like he didn’t he didn’t have that opportunity. I think most of the time, like the one time that he almost walked off campus was because there is that element of neglect when that they don’t want to own up to that they didn’t want to own up to
50:59
well, you know that it is commonplace, though to maybe not reprimand a child with disability or to let them get away with things you wouldn’t normally let a neurotypical child get away with. And that’s something that just needs to change. I think that hate needs a change in parents minds. To me, it needs to change in the parents that witnessed us give Liam a timeout when he was little because he was he was he deserves Yeah, I’m out. And we would get a look like whoa.
51:30
And they don’t look at you. And you do that to your other kids. They actually look at you like, aren’t you gonna say something about that? Yeah,
51:34
what that kid? Right, like,
51:36
right, like, if it was Sophia, they look at her and go like, are you? Aren’t you going to stop that?
51:40
That’s a whole nother issue, though. But yeah, that’s something that I think parents need to make sure they are conscious of, and you make your own adjustments, but just know that it’s okay. And in fact, we’re learning this is how we learn, you know? Yeah, I can see how a school would would would do that.
51:56
But you think about that. And you were saying about how the teachers would just don’t want to don’t want to reprimand them. Because how they think they’ll look but then those same teachers will hold a prejudiced against like your child up while they’re just going to make noise in the assembly. Yeah, that one teacher was like, Well, don’t wait for that class, because they’re just loud as well. They’re loud, because why don’t you give them the opportunity to, you know, by the way, I’m saying, in an auditorium, everybody’s like, everyone was loud, everybody’s loud. So I think it’s just having that like, freedom for our kids to be themselves and to fall under the same umbrella as a freedom so that the other students have to be themselves, you know, with the supports that are in their IEP. And that’s why the IEP is so very important. I feel like Liam has that freedom now. Yeah, I do. Going into seventh grade, I feel like, you know, he has that freedom. And it’s, um, we’re very fortunate because it is, Friday was his first full day, but they give like half days, the first week is like half days, just so kids get used to like, being at school, which I think is awesome.
53:04
Yeah, then Friday was the first full day and now he’ll have this whole week full. So.
53:10
So today, I have a meeting with his resource teacher, I connected with her. And she was like, let’s meet. And so we put out some dates, and we’re meeting and that’s, that’s the relationship. That’s the relationship I never had. And sometimes when we were fighting for Liam’s education, I’d hear other people say these things, and I was just like, what, but that is the that is the reality of the relationship. That is how the, the supports and that’s how, how it should be for your child. Your child has an equal right to an education, your child is equal, your child deserves to as as much as every other child knows that they belong, wherever they are, they have they just, they have that right. You know, they should not, they should not feel any different. They should not be made to feel any different. And, and there’s a responsibility to his IEP team, there’s a responsibility to uphold those supports. Now, they’re all on board, and that they’re all on board. It’s called an IEP team. It’s a team. And we do have some podcast episodes that talk about some of the rights and sometimes it’s easier to listen, I know that’s one of my supports in life is sometimes it’s easier for me to absorb when I’m listening to something than reading it. But it’s very important that we all know what our child’s rights are in order to make that transition into school and and know that that’s on on their side. It’s there for a reason, because really great people fought for those rights. There’s lots of really great supports that you can bring into the school year. And if you don’t have that, wherever you are, look up your school district, there’s a timeline, and just request in writing, and an IEP meeting and request the supports be included in in the IEP. And you have that right. And they do have to follow the timeline to amend your IEP, they do have to by law, and, you know, you can even write in your letter just to confirm if your supports aren’t in there that those ports are in there. And communication is a really, really big deal. So that’s where the M is now and the seventh grader, he’s on curriculum, if that matters, he’s on curriculum. And he’s happy, and he’s happy. He has some friends, he loves movies.
55:50
He loves science,
55:51
he loves science. That was one thing that like we didn’t know, like, Liam didn’t love science before. Because when it came time for science, his bi would go on break. And they didn’t give him another bi. So he just literally sat in the room. And it makes me so sad to think about it,
56:09
and the teacher refused to hand or to make up notes that they should get, you know, photocopy or whatever, and give to them, you know, hard copies of the notes so that he wouldn’t have to take all these notes. And
56:19
that would that and that should be one of your support and your IEP. But also if we had known that’s against the law, that’s a violation of IEP, like he’s supposed to have someone with him. Because so you know, because sometimes they’ll say, VI’s don’t support in curriculum, but one of the supports to access his curriculum is his behavior. Yeah,
56:39
that’s what they do. Right?
56:41
So just so you know that but anyway, he loves science. What ended up happening is that once he got to a school that actually implemented his IEP, we found out that Liam loves science. That’s what he said on his second day of school. I love science. So
56:55
made me happy. Yeah,
56:56
it’s really it just to him because he’s allowed to love science because he’s given science. Right? And not everybody does love science. He’s his dad’s kid. We hope everyone is had a great summer. Got some rest and respite. And there was some me time some self care carved
57:18
out. Hope you have a great Labor Day weekend.
57:21
Yes, if you haven’t, yeah, have a have a great Labor Day weekend. Even if it’s just 20 minutes, take 20 minutes to just Labor Day self care, do some self care and put that into your put that on in your IEP as a list of supports that you need. Mom, Dad caregiver, what are the supports that you need in order to access your potential? And because it’s valid, like I wish everybody should fall under that same umbrella, we all have the supports, we need to make sure that you’re getting getting yours.
57:54
Thanks for listening. Thanks to all our listeners for following us and and supporting us. And we look forward to this year and we hope you do too.
58:04
reach out with any questions. If we don’t know the answer, we will do our best to find the answer or point you in the right direction.
58:11
So until next time, I’m Stephen Saux,
58:13
And I’m Lori Saux. Thanks for joining us on If We Knew Then podcast
58:21
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 