Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
0:32
And I’m Lori Saux.
0:33
And today we’re talking about Liam turning 14. I think we’ve done a birthday type episode. Every year that we’ve had the podcast, I believe the first one was, Liam turns 10. And it’s for us, I feel like it’s a double sided, I feel like we could give some information to people coming behind us. But also I love reflecting and going back and hearing about our thoughts and Liam’s accomplishments and our attitudes toward certain things as each year goes by.
1:14
For me, I feel like these episodes are something that I would have wanted. I remember when Liam was born. Well, I remember when we received the diagnosis, how I began to search for anything, and you know, there just wasn’t it was 14 years ago. So even just information accessibility has changed. But the information and the stories weren’t really out there, there was there. At that time, I couldn’t find anything positive at all. And I know that you’re not supposed to compare children. I mean, that’s the first thing that they say to you. Whenever any child is born, is you just don’t compare children. But I wanted something to I looked around I you know, I have a neurotypical daughter, I’m looking around, I see all of these other neurotypical children. And I remember, you and I going, where are all the children with Down syndrome right there, you know, when you look at the ratio of children born with Down syndrome, it’s a pretty good number one,
2:25
an 800, or 1000. But
2:27
you look around, and there weren’t any children with Down syndrome in our everyday life. And actually, in my life as a, as a whole, I didn’t really experience very many people with Down syndrome, we had certain stereotypes, we had certain television shows. And and that was really it. But as a parent, unless you have experience with an individual with Down syndrome or or know anything about it, you immediately be begin to look and tried to find answers. And I hope you do, because, because sometimes that for the most part, the diagnosis is delivered in a way that is heart wrenching, and you know, pulls the floor from underneath you. I do believe it’s changing. I do believe that people have different stories. Now we have heard different instances of nurses and doctors and you know, delivering the diagnosis, as it’s just news, and information to help support you, but in you know, with the hope and the joy that is actually reflexive of this journey,
3:48
you talk about, they always tell you not to compare children. And I think they is just maybe other parents and professionals and stuff. But we all compare our children, like we all compare our careers when other careers are our different aspects of our lives with other people. And not that we want you to compare things when in our life. But we think that you have in the information, though, can allow you to maybe continue to do something that you weren’t sure of. Because you can see an outcome or maybe modify some things that you do, or just to feel like a community and to know that when it comes down to it. We’re all going through the same thing just in just being a parent.
4:33
Yes. Being a parent. Well, when you when you say that it’s I think because our community I didn’t have stories to reflect on I didn’t have other people to look to that have accomplishments. So I had to rely on these comments and the guidance of people who really didn’t have information and through sharing so many of these store worries that we’ve shared on the podcast, there are examples. You know, we see we see people, fighting for their education, going to college, driving, getting married, getting married, having children, all of these things that are denied to us with the diagnosis, those are the things I mean, that was our journey our diagnosis was received with couldn’t, you know, you could have gotten a test, you know, our, our diagnosis was handed to us with a plate of oh, these, these guys are fat and lazy. From a renowned doctor, I can’t think of any information that we received when Liam was born and received his diagnosis, I can’t think of any, any information we received in that NICU, about Down syndrome. That was accurate. Yeah, the hell true,
5:51
no, nothing,
5:52
absolutely nothing, not even the services that you can receive, or that that he, you know, should fight for not not any kind of hope, not, not anything as far as what he will accomplish, or his potential it was, and none of it, none of it was relevant to the journey that lay ahead of us. But we didn’t know that. So, you know, we share the story, because we share the story to hopefully impact others journeys in a positive manner. You know, we want people to have hope, if, if you’re receiving negative information, if you’re having to fight for an education, if you’re judging your child by standards, that really aren’t real, they’re outdated, they’re outdated. And, and also, you know, one of the things that I find, and we talk about a lot is, what eventually happens is this dichotomy of no hope for our children. And at the same time, this really high bar that they can never reach kind of thing, like the school will say, your child will never learn to read. But then if your child, they put that bar, so up high with no supports that your child isn’t going to be able to read. And then they say it’s because of his chromosome, right? Their chromosome. So really, it’s just to say, Hey, this is what we’ve learned, it’s been 14 years, if I go back to 13 years, there are probably some things, I know that there are things in the last year that I’ve learned that I was like, ah, aha moments, we had a lot of big events in our life this year and challenges and choose see how Liam handled those. And, you know, one of the things that I I really realized is the way Liam processes, he might express what he is processing in a different way with more of a freedom. I think that if I’m feeling something, you know, I have my ego, and I have social norms, and I have the care about what other people think, or what other people are gonna think about me. And that guides the way I respond in public or in life. Whereas Liam, if he feels something he doesn’t, he doesn’t have a problem, like asking or telling you or talking about it, or starting the conversation. And I believe that comes from believing in Him and talking to him all the time, including him in conversations. I think that gave him the freedom to then start conversations. You know, we asked him things all the time. And I remember along the way that I would be upset or frustrated because he wasn’t answering verbally. Looking back, he was definitely answering whether it be with emotion or action or the book he wanted to read or whatever it was, he was answering. And now that there’s a he’s catching up with his expressive and his cognitive. He’s willing to ask questions, and I have to think that’s because we’ve always asked him questions. We’ve talked to him. Well,
9:23
that’s a big thing. This year, when he meets somebody, he likes to ask some basic questions, just kind of, hey, let me get to know you. Right. And it could be Hey, what’s your favorite movie? Hey, what’s your favorite ride at Disneyland? What’s your favorite color? What’s your favorite book? You know? And so it’s really neat to hear him. Ask those questions. And he takes in what you’re saying is like, oh, okay, great. I’m telling that so I know more about you. And I think that does stem from asking Liam how he feels is very easy. When you have someone who in your mind, you may think I need to take care of a lot. I need to do this for them and do that for them and you had to guide them here, you start to abandon the idea of having them participate. And that is very easy for a caretaker to do to, to overwhelmingly do everything and just guide your your child through the best scenario you think is right, right. And so to ask questions, what do you like? What do you want to do? And then to follow through and, and do those things? I think is is a big lesson I learned this year now that was watching you do it, and then I see the payoff. But that’s a real thing this year.
10:32
But we also do that with Sophia. I mean, how many times that I try to do something for her because I knew better, I
10:40
just think is magnified with Liam? Oh,
10:42
I think it’s, you know, I think the only thing that magnifies it is one, I can honestly say that sometimes that patience to allow him to get there doesn’t exist, like you expect things to go at a certain pace. And if you’re going to ask him, you have to give him the space to answer. Right. And a lot of times, what I’ll do is just put myself in Liam’s place. And if someone asked me something, and I was thinking in the answer, and they kept asking me the question, it would be very overwhelming, right? And then I might shut down. Well, what that looks like, if you’re, if a teacher or an aide is doing that to Liam is they’ll go, oh, well, he can’t answer because he has Down syndrome. You know, but it’s not, it’s just you need to back off, you need to, you know, and we have that conversation at his old school a lot at Carpenter, we’d say, you need to give him the space, you need to allow him to answer. You need to allow him to do it. So I think that’s one of the things that, that shines a light and makes us think that we’re doing it differently. But also the fact that we think if we’re doing it the same, that shines a light on it. You know, we don’t give it a second thought to say, you know, Sophia, we do when you pick that up when you pick that, oh, that must be annoying most of the time, because she’ll look at us and say, All right. Yeah. Right. Liam doesn’t look at us and go okay, back off. But well, he did start to say back off. Yeah, he actually, I think he learned that from Sophia, which is great.
12:19
It was this weekend, during his birthday.
12:22
Yeah, it’s like Back off, back off, you know, so here, he’s 14. And we’ve said it, I think almost every year, is keep having that bar up there. Because he’s gonna get there. And it’s gonna look different for everyone, but they’re gonna get there, if you just, if you just don’t give up, you know, like, you don’t give up on any of your kids, it will come and it will surprise you. Whatever way it happens, whatever way the conversation happens, whatever it looks like that milestone, will, will be
12:57
there. It’s easy to talk to your child in a certain way, and then say, Oh, I’m not don’t really feel like they’re getting what I’m saying. And then dropping down to a less mature way of speaking. And then continuing that for a long time without remembering to go back up to a more mature way of speaking. If I continue to talk to Liam like a baby than I should expect him to continue to be baby like in a lot of his actions, we need to make sure and I need to keep reminding myself, keep speaking to him as a teenager, as a young adult, talking to him about being a young adult and a young man. Because that’s the only way with anyone that we’re going to get ourselves moving forward in a trajectory that’s upward instead of just a static, you know, floor toe. Yeah, like a plateau.
13:52
Well, I think that’s a really good point. Because one of the things that, you know, Sophia, Sophia is a teenager, and she knows the word teenager, and she has watched enough movies, and you know, had enough conversations with her friends where she knows the stereotype of being a teenager and all of these things. I’m reminded that I have to have those conversations with Liam. Like, I have to talk to him about things. I can’t just assume that he knows. And a lot of that is like slowing down and being present in the moment because I remember just, you know, when he had his Christmas break, no one had bothered to pull out that calendar and say, Hey, Christmas break is coming. And then on Friday, before Christmas break, I was like, Alright, are you excited for Christmas break? And he was like, no one had told him Christmas break was coming. And that seems like a really mean trick. But it just it it reminds me that, you know, one, I can’t just be this bottle who takes all the information and keeps it and doesn’t share it? There has to be I have to find a system especially now that he’s 14 And he wants to have that independence. And he’s he’s learning these things. And we want him to have independence. We want him to cultivate healthy friendships and relationships, we want him, you know, he and this is completely up to each individual household, but they do this sex education talk at his middle school. And we doubt that we had the option to opt out. But every parent was given the option to opt out. We weren’t it wasn’t contingent upon his extra chromosome. Well,
15:36
it’s a pretty intense discussion, therefore, you know, it’s it’s something that probably we didn’t get as children in education where it was, you know, I mean, I didn’t have I went to a private Catholic school, that wasn’t sex education wasn’t anything that was going to happen. But in this public school setting, except for the word don’t, yeah, right. Sex don’t. So but in this public school setting, there really, and maybe the way our world is turning, they are really specific about sex, just lay it down. We’ll tell you about how things work. And then also, he
16:12
he was given a talk about menstruation. Like, yeah, I learned about, I mean, the whole class learned about menstruation. And as a woman, I remember going to work in a restaurant on my cycle and having to like whispered to my French, hey, do you have anything
16:29
even going, Oh, I have to go get my private feminine products.
16:34
And then And then I remember, like hiding it in my sleeve. And like passing,
16:39
if we’re all talking about it in a classroom setting, man that just kind of breaks down barriers and walls. And we could just talk. I mean, yeah, it’s part
16:45
of it’s a part. I think that what’s so great about it is it is a part of your, your body, it’s a part of nature. And And wouldn’t it be great if women didn’t have to, you know, feel young girls coming up didn’t have to feel weird about something that they experience every month, and that it’s just a part of life? And just
17:06
to get the answers maybe that you wouldn’t be able to even ask your parents, maybe you wouldn’t feel comfortable or, or maybe you would, but just now you have more info to go talk to them, you know, and no more questions to ask. Also talking about birth control, talk about all the different aspects of that, and just kind of getting through the information
17:25
donation, so you don’t learn it on a tick tock, because really, that’s where if we don’t teach our children these things, they’re going to learn it. And you want to be the person who is in control of the dissemination of information, you want to make sure that they’re getting the correct information, because information and knowledge is power. And that will look like for your household, whatever your beliefs are, whatever your household is comfortable with. But he just encouraged an age appropriate conversation. This isn’t the first time the conversation happened, it happened, you know, in fifth grade, that’s when Sophia got it. And it happened, you know, in fifth grade, when we started to experience different things instead of, you know, just pretending they don’t exist for Liam. We just talked about it. And we talked about it age appropriately, each year we talk about it?
18:18
Well, it’s good to have the information. I mean, I have to tell you, if you’re trying to control someone, then don’t give them the information, right. That’s kind of how I felt as a child like, you know, that was completely something to save for marriage. And so if we don’t talk about it, it won’t happen till then. That’s not really realistic. But that’s the idea, right? Well, giving information to all children is important for them to have success. And for them to feel empowered. I think about when I when I first read about Down syndrome as of new parents. And one of the main things was people with Down syndrome not having kids. So what was it wasn’t that they were infertile? Was it that they didn’t have sex. So one of the things was, well, very possibly, a high percentage of males with Down syndrome were sterile. So that was one of the aspects. But the other aspect was also it is very possible that things weren’t talked about. So the idea of what sex was and how that worked, wasn’t talked about. So it didn’t, sometimes it didn’t happen, or people or adults that were more in control of their young adult children’s lives weren’t allowing that to happen, you know. And so it was this, this juggle of like, what was it wasn’t an actual physical thing or information being withheld and in knowledge being withheld,
19:40
but how much of that information we’ve discussed this before, how much of that information is correct information like that? Yeah, like the interview that we just had with Charlotte and Riley. And they were talking about wanting to have children and infertility. And immediately My mind went to they were sarobi. Because of Down syndrome, and the mom was like, No, it’s more, it’s not a case of them being sterile it’s that her because she had been treated for leukemia as a child, that radiation had destroyed a lot of her eggs, it is an effect of having very aggressive leukemia. Now, the difference is a doctor, treating a neurotypical individual may say, this, will this will destroy their eggs? Would you like to save and harvest some eggs? I’ve heard of that before, really intense radiation or chemotherapy. But they didn’t do that for her. And that is the bigger question like that. That is what needs to be addressed. I would love to see the information that was given being to be tools to help us to support our children, and not be weaponized to create limits, and false beliefs on their lives. Right. So, you know, that’s really part of the conversation over this last year that we’ve, we’ve really started to talk about, like, we look at Liam, and we talk to Liam, and we think about what he wants for his life. Can we individualize what he wants? Can we take any kind of knowledge that, you know, of information that might be helpful for him in regards to having an extra chromosome? And can we can we use that to support him, but then also not limit him? Let let him show us let address each thing with him as we go along? I mean, I feel like that’s really been the last 14 years is finding that place where with Liam, he’s just Liam, you know, we, we get to his birthday. He’s 14, right? Historically, I, I remember early on, and we’ve had this discussion. And I know it hits true with parents, because you think about birthdays, and it’s a celebration. And I really do honestly celebrate both of my kids. But there’s something about Liam’s birthday that just ignites differently. Whether it be the fact that, hey, he was born at 30 weeks, and we were told he might not live, right. And so the fact that we’ve had him for 14 years, there’s a part of me that I don’t just say happy birthday, I say thank you. Thank you for living. Liam, thank you for sticking around. Thank you for fighting the fight. And I just remember earlier, I needed him to identify that it was his birthday, I needed him to know how old he was, I needed all I needed these things, you know, and then we get and he’s 14. And I don’t know if I stopped needing I think I just stopped pressured, like, yeah, I guess I stopped needing, or I could identify what the needs were for me. What I needed. Is it what I needed? Or is it what Liam needs? Right? What is it? And both are valid? Both are conversations to be had, you know, like, but I needed to identify like, Is this for me or for him?
23:19
Were you talking about it hitting different hits me different too. And I think specifically, it’s because at that moment that he was born, I was in such a crux of like wondering, like, wow, did this? How’s this gonna affect me? You know, when he was born so early, I was like, Oh my gosh, this is like a really bad thing. And then 10 days later, for those of you have listened to our podcasts, we got his diagnosis. 10 days after his born, it felt like the world crumbled. So just surrounding his birth was such this like, move in such a different direction of where our life was going at the time. It was this downward spiral direction, and then to look back every year and see what what an amazing life he is and how it’s affected affected us in such a positive way.
24:08
Well, it’s funny because he was born 10 weeks early. He was in a NICU, he weighed two pounds. It was teeny tiny. And that didn’t worry the NICU but the news of an extra chromosome. It was like Oh, forget it. And when you think about it, it’s like 30 weeks, right there. Nothing should have deterred from that. Because honestly, him having Down Syndrome should have just been like, oh, well, these are the different things that we should look out for. And these are the other things that we can do and support, but it did not impact. The fact that he was born at 30 weeks that he was 10 weeks early. It didn’t make that it did not that journey was already the challenge. But we were made to believe that the chromosome was good was really the weight. And I mean, honestly how much I have to ask myself how Much of those looks in the grocery store those odd questions at the park the you know those statements, how much of it, how much of it really mattered. But how big was it really, I let that be my focus I really did for a very long time. I let that be like a fight a boundary, and I didn’t really have to pay that much attention to it. He was the real fight was the fight for his education. Which, you know, school districts deny individuals with disabilities disabilities across the board or marginalized individuals, they deny them their education, and they create a it’s a fight. And it’s a fight that we weren’t used to with our daughter. So it took us from it took us by surprise, right. But that was, it wasn’t the stairs in the curiosity of people. It was that we were going to fight for his education, and that, that we had to be planted and know the law. I can sit here at 14 years and say the exterior looks and the stairs are questions that comes from lack of that look, that comes from the lack of inclusion that is in our school system right now. I think what put me on my heels was because it was the same tone that we got in the NICU, it was that same having to vet to defend our child. And I feel like if I would have just taken it with like, you know, the same way when people would say, you know, stuff about Sophia, or ask silly questions about Sophia with just like, oh, they just don’t know, or that’s just a question. And that’s another human doing their best. Right, the real fight. That was the distraction the real fight is for our children’s education and placement in the classroom, which we have lots of episodes. You know, but here he is, he’s 14. And he has interests that are his own. He’s his own, you know, person. And he’s a teenager, and he’s experiencing the same things. The same emotions, the same transitions, as any, any teenager,
27:06
totally so important to remember.
27:08
It is so important. I think that is what I that is the message that I would want to say, 14, to Liam as a baby is every milestone that he approaches, just to approach it the same way I did. You know, with Sophia, like maybe there’s more supports there. Maybe it takes a little bit more time. But don’t let that extra burden you. Like he’s on him. He’s a teenager that. Here’s another thing, you know, when you’re talking about different attributes that we collect along the way, I know that I’ve had so many people tell me, Oh, those guys are stubborn. And anytime the sentence starts with those guys or downs, kids or anything like that, I just like, Okay, what’s going to come, but I’ve heard so many times in the last 14 years. But you know what, every teenager is stubborn. every teenager is pushing their boundaries. every teenager draws a line in the sand, every kid every Well, yeah, but when you get to being a teenager, that’s, that’s a significant change in the brain. And we’re gonna have Miss Arias on our podcast again, and we’re gonna talk about the brain, there are differences. I’m not saying there’s not a difference there. But I’m saying can’t we just approach it with equanimity, and then make the adjustments that we need to make, I feel like if we go in with adjustments, we’re adjusting things that don’t need to be adjusted. And we see that, you know, because other people will do that for lamb, they’ll adjust because of the chromosome, and they won’t give him that shot to rise to his 14 year old self bar, and challenge and do all of those things. They’ll say, that’s the chromosome, and it’s a different way to approach it. Like there’s a different way that you, you know, cultivate a teenager, there’s a different way, there’s different conversations that you have, because they need to learn their boundaries, they need to know, you know, and develop healthy relationships with with, with authority. You don’t want your child to just accept what someone with authority says because my fear is the predators that are out there that really seek out individuals with disability, because they believe that they’re easier targets. Well, I don’t want my son to be a target. So I’m going to, you know, say, hey, these boundaries, you know, especially when you’re talking about in school behavior, you have a bi just so you know, here’s a little thing, be eyes, if they’re denying you, one on one bi a bi as a support because your BI will help cultivate that behavior so that your child can access in their curriculum, if they try to tell you anything other, that BI is important to keep them on task to be able to access their curriculum. And we know that supports, supports to access their curriculum that’s part of their right. An equal education with the supports to access their curriculum. I just want to throw that in. Because I see a lot of people fighting for big eyes or never asking for big or being told once. And then I like to say to them, if they deny me Well, now that you know that that’s a problem, that you’re going to say that you’re accountable for any anything that happens without my child having that one on one assistance. Okay, that was a sidebar. Yes. See, we get so mad when I do those sidebars, he’s like, where are you going? But I just, I just wanted to say that because it comes to the top of my mind. You know, we Liam is cultivating relationships, right? So we have certain there are certain rules that when you’re in school, you don’t hug in middle school, right? And hugging and individuals with Down syndrome. That’s, that’s an episode. You know? Yeah.
31:06
But there’s all these, these really tough things coming at kids with Down syndrome, because you’ve got we’ve talked about how we’ve talked about hugging a bunch, but we talked about stubbornness. Let’s say Liam walks into a room with five people he doesn’t even know me says I want something. Five people are lunging towards giving it to him. That’s just like a natural thing for people having that happen all the time. It’s almost like he’s a celebrity in his trailer asking for just the green m&ms. I mean, he’s, he’s going to get a lot of things, right. So yeah, then you expect him to cooperate when things aren’t actually how he wants it to go. Right? Well, and then you blame the chromosome, because you’ve been teaching him that he gets everything he wants to now, you know, it’s just this double talk to him, just like the the hugging, it’s like, oh, everyone wants to hug Liam, everyone wants to hug Liam. I mean, how many times he gets asked to hug. And then if he thinks that’s the way to do it, he hugged somebody, like we’re not supposed to hug now. It’s like, you, it’s just so infuriating, really like this double talk this two messages given to someone who needs for as, as an accommodation, it should be one voice, it should be something specific, not like very generic type of this double talk. And so we need one through line. And that’s what I think as a big transition during middle school and, and teenage years is that transition from Hey, we’re getting into a young adulthood. And conversations that should have been happening need to be streamlined. And, and that is very specific of, of how things should go so that we don’t run into even more stubbornness or whatever, you know, like the conflicts that you have as a teenager,
32:57
I’m going to be a little more specific, because I feel like that’s a little bit around the you have a specific Yeah, because how that presented itself and Liam’s life. So hugging, like you said, it’s huge. It’s been huge since kindergarten. People would want to hug Liam, then. And that’s perfectly fine, because he’s adorable. But Liam goes to hug back. And Liam gets in trouble. Right? So that’s what you’re talking about the double talk the one clear line? Well, we’ve been working on this. And last year, it was really solid. He was in sixth grade his return to school, he was just solid. There was he knew the rules. This pumps high fives were good, right? And then this year, he got another friend and that friend loved to hug. And I would say, fist pumps and high fives and that friend, and this is that friend would say no, I’m fine. And I’m like, it’s not about you, kid. It’s not about you. It’s like the lady who sat outside the school. And Liam went to talk to them. And I said, Do you know them? And he said, No. And I said, we don’t talk to strangers. And the lady in the car said, it’s fine. And I’m like, No, it’s not. It’s fine for you. It’s not fine for my child, either of them. And I make the rules, right? There are rules. Because I’m creating a foundation. These are the years before they go off to college. And if Liam wants to go to college, he’s going to college. Before they go off to college. We have to for all of our children to create a clear solid foundation beneath their feet. Well, what happens? This kid and I gotta tell you, Liam will hug everybody he loves because he loves. I mean, he’s just he loves to hug his friends. But at school, we don’t hug we don’t kiss hands, period. That has to be because, yeah, maybe you do that with your friend. But if that’s a muddied rule, and you go up to a stranger, many bad things can happen. And I want to just eliminate that wrong student you go up to the wrong student, and then some students as punching my child, and you know what Liam initiated it by crossing their boundaries with the hug? Because he knows that even though it’s a rule, hey, that rules aren’t that solid. Well, he needs to know. Here’s
35:15
the other the other person on the other end go. It’s okay. Yeah.
35:18
And it actually happened with the other kid that was like, it’s fine, while this other kid is smaller than them. He’s neurotypical, smaller child that like, and I, there’s just that little tinge of, there’s that little tinge there that I just do not, like have any, quote inequality? Do you know what I’m saying? Do you understand this? If you have any of this, you understand? And I hope nobody has these relationships? Yeah.
35:45
A friend that doesn’t see him as equal. So they’re like, it’s okay. And I’m gonna ask friends that do see. Most Yes. And all of his friends do see him as Yes.
35:56
But there’s this little like, little layer, this little thin layer of fascia around the relationship. And what happens is that then Liam hears it’s okay, well, then they hug and the kid falls. Does anybody want to guess who gets in trouble for that fall? He gets in, Liam gets in trouble. Liam carries the guilt. Liam feels bad that he hurt his friend. Liam’s mind is not abstract. So he does not understand that that child participated, and actually initiated the problem. Because that child was told many, many, many times. Do not hug. Liam doesn’t hug at school fist pumps, and high fives only. And that child said, It’s okay. And that child was told no, it’s not. But they did what they wanted. I mean, any human who is in that situation, extra chromosome or not? It’s not fair. And then then to have Liam be the one who gets in trouble. I think we’ve probably all experienced that. Where it’s like, well, they said that that was fine. If I just did that. And then you get told you know better? Well, how do I know better? How do I know better? If it’s really, really a muddy rule, the line is not drawn.
37:29
So Thanks for clearing up the double talk.
37:30
The double talk, what I want Liam to know, and this goes into self advocating is, first of all those rules aren’t those rules are there for you, buddy. They’re not there to protect society from your hugs. Those rules are there because I because some people naturally understand boundaries. Now, not every neurotypical person can create healthy boundaries. It took me a long time as an adult, to be able to cultivate healthy boundaries. But I’m going to give you Liam the same way I gave Sophia, a foundation to grow on where you know how to create an honor your boundaries. So you go out into the real world, and people don’t just expect a hugger, they expect a human. And you know, I have many friends that are like great huggers, like, oh, man, I love her. She gives the best hugs. But I don’t just know her as a hugger. As a hugger. She’s a great, smart, talented, wonderful human who gives the best hugs. And you know why she gives the best hugs, because she’s there and she’s present. And she’s not looking over my shoulder to see who’s coming in the room, or to see who you know, who’s looking or to see if there’s something that they should be doing.
38:54
That’s a real hug.
38:55
She gives a real hug. Well, that’s the same thing. Liam does. His present, I think that we’ve really hit that on the head of the nail, is that the thing that makes Liam so awesome is that he’s present.
39:08
That’s what the main thing I feel like I can I’m learning everyday from him
39:12
is to be present. And so, you know, when you talk about the the rules, and I think now he’s a young man, and when he was 13, he’d say no, I’m a boy. And I’d say, Okay, well, when you’re 14, you’re going to be a young man, because the next thing is to because he’d say dad’s a man. And I’d say, Yeah, you’re gonna, you’re a young adult, you’re a young man, and then you know, you’re an adult. These are the things that change. These are the things that we want to teach you. These are the age appropriate conversations. It’s so cool to see him grow. It’s so cool to see who he’s becoming and and I want to really embrace I want to embrace that and support that with the same excited meant and the same passion that I want the school to embrace his support so he can access his curriculum. I want to embrace the supports for him to access his life, like, what does he want that to look like?
40:14
Well, it’s about communicating with him, right. And we communicate each step of the way, as his friendships are maturing, as he’s maturing physically to and you talk about him growing, we talk about all those things, not to really go back to the sex ed, but just about his body growing, we talk about he’s seeing changes in himself. We’re, we’re talking and just and then it’s not a it’s then it’s informed. It’s not a question. It’s just, this is me, this is what we’re doing. And we just keep talking.
40:45
It’s empowering, right? If you think if you can think back to, you know, when you’re a teenager, how much your mind and body changes. If no one tells you what’s going on, that’s gotta be really weird. That is something that’s like, you’re a totally different person, what feels like overnight. So we have self care, we have all of these, you know, different conversations that that need to be had wear deodorant, because you don’t want to be the stinky boy, when you’re a young man, and you go through puberty, you know, you start you can, you can smell, right, here’s deodorant, this is why we wear it, put lotion on your skin after your bath. Because, you know, you need to take care of your skin. Dry Skin is itchy, you know, all these different sentences. And I think I had the same thing with Sophia, like, you have to wash your face, you have to wash your face, you have to wash your face forever, until finally she got Oh, I have to wash my face. It’s no different. It’s no different. Same
41:45
with the discussion of when he’s feeling these emotions towards girls, right? And he sees girls. It could even be adults, you know, adult, a young adult, and then he’ll he’ll wave or he’ll go up and want to talk. And it’s like you had said in the past podcasts like, Hey, man, you gotta get some game, right? Well, we can talk about just the appropriate ways to Yeah, express yourself that you are attracted to this person. You think they’re cute, right? And when is it appropriate to talk when to say things? And what do you say? And I mean, this is goes down to people asking friends like, Oh, what do you do? Your mate used to be like, when I was a kid, hey, what’s your pickup line? You know, like these cheesy, cheesy, stupid pickup lines. That became a joke, but they were used because nobody knows what to do. But
42:32
also when you when you say that about boundaries and respecting if you if he doesn’t have a solid foundation of the boundaries in his life, how can he be asked or expected to respect the boundaries of you know, anyone else? And that’s what I am. That’s really my main, you know, I’ll tell them I’ll say look, you like I know you, I can see that you have a crush on that girl. I can see that you like her just because he gets really silly. He acts like, you know, you’ve seen the movies like a teenage boys like wow, like quiet and staring like, oh, I don’t have anything else. I don’t have anything to say, I don’t know what to say. And he’ll be like, good, I’m
43:13
good. And inside voices, yeah. Inside Out. Oh, like, it’s
43:17
just like, inside out, right. And so you, you know, I just I say if you like her, you want to respect or you don’t want them to feel uncomfortable. And I know, this is how you feel. But if you say that, it’s going to make them feel uncomfortable. And we don’t want our friends because we do want her to be a friend. You know, at least we don’t want our friends to feel uncomfortable, do we? Because then it’s never going to be anything else. You know, because they’re, they’re not going to. And here’s the hard part, you say? If you make them feel uncomfortable, they won’t want to hang out with you, Liam. And that is the truth. I mean, anybody listening? Do you have? Can you think of one person that makes you feel uncomfortable? Do you and you adjust for them? Right? Don’t we want to empower our children to just have that mutual respect that we had, they have to respect themselves first, in order to respect others, and they have to understand that so we have to have that conversation. And it’s not any different having it over and over again, that’s what I want you to hear is like having over and over again, is what you would do for your child who was neurotypical, you have it over and over again, and you have those conversations many many times differently over the years because their brains change. And every time their brain shifts, they have to reprocess all that information. So you know, we want him we want them to have crushes we want them to go to dances, we want them to dance with people. It’s okay to take a dance class help them you know, we tell them you that’s not you have to have gay Mmm, that’s not game. You can’t just go up and be like, Hey, you want to come to my house? Because that kid that’s uncomfortable? And I think at 14, you can say, You know what, let’s rephrase that. Maybe you want to get to know somebody, maybe you just want to talk to them. You know, so he does have this his interest. He’s 14, he has introduced interest in girls, right? He’s interested. He’s interested in books and movies and Five Nights at Freddy, which that scared me. But kids like scary things. kids his age, like scary things. He likes roller coasters. He just rode the in credit coaster for his birthday, California venture. And what what is amazing to me, is his two best friends are afraid of rollercoasters.
45:46
He did it.
45:47
He did it. He was like, He’s not afraid. He’s like, I want to ride that I see. So it’s just he learns, watching the people around him, his sister, and his dad love that ride. And he was like, This is what I want to do. And they all three, I was so happy to hold everybody’s bag and watch them ride that ride. You know, he has he just he has interest in movies. He likes to act. You know, at 14 his annual is do with his blood work. We have been you know, he hasn’t had really any significant besides tubes in his ears. He hasn’t had a significant well, but it is it was a big deal at the time it was and anybody who’s going into that might it might feel like a big deal. But it’s a very common surgery for everyone’s Yeah, ask adults around you. I was surprised how many adults? Oh, yeah, how many adults I know that had tubes in their ears. And it was really nice to hear. It doesn’t honestly, it doesn’t take that like feeling like that you get when your child has to go through any kind of procedure or anything going to the dentist, anything. But you know, he might have to he’s probably gonna have to have braces.
46:58
Yeah. But for the most part, he’s a healthy kid. I mean, like we’ve talked when we talked to Dr. Klein and I was one thing I said is like, you know, any kid can have a serious health issue. And that’s not something we had to deal with with either one of our children, actually. But Liam is a healthy kid. And no matter what was told us, and what to worry about, when we got the diagnosis, it was not worth worrying. So so we look toward his future as not having to worry about his his yearly his annual but you know,
47:31
well, you still get it. I mean, just fear. I mean, it’s the same, it’s the same thing. And mine, you know, yours. Yeah, mine and yours. It’s just like, you know, but I think about when Dr. Clinton the thing was, is like we didn’t, because of what we experienced that His birth, we didn’t have the ability to take that list of challenges and do anything positive with it, because it just we just put it on our shoulders and let it weigh us down. But if you have a great pediatrician, like we do, she took that list. And, you know, she already knew the list. So she would say, Hey, these are the things that we’re looking at this year, we’re gonna, we’re gonna keep, we’re just gonna use it as information we’re gonna keep testing this is when we test the thyroid. This is if we wanted to sleep apnea, we had his knees and his legs checked out, you know, at the year that you’re supposed to, when they’re developing, he does have flat feet, he does need arches in his shoes. And what I see and I’m still trying to get to the to the bottom of it if it has more to do with skin or it’s something in his diet that I find that he was having like problems with the skin on his feet like the bottom of his feet very dry rocking a bit. So you know, I like at first I was overwhelmed like oh, no, this is a very big giant challenge. But and I bought a few really great products for heels, they have really great products online that will you know, I think one of them they used to sell at Bath and Body Works. And it was one of those, you know, as seen on TV that like helps for really dry feet. And I
49:01
also taking the time to like soak feet and well that yeah, cleaning and the hygiene of that, you know, you can see a big difference there too. I think that little extra effort into the feet. That
49:13
might be a big challenge. I know as a parent, sometimes I just I’m reminded that there are certain things that till Liam learns how to do them for himself. I’m really taking care of two people I’m taking care of myself and I have to take more of a meticulous care on certain things like I’ve gotten Liam to the point where I put out his things after the bath and I’ll say this is you know, I spent a while just going here’s the lotion, this is what we do. This is why we put lotion on our knees and our legs and our, our elbows. You know it was something that I learned very young that you put moisturizer on your feet and your knees and your elbows
49:54
and there’s adults that go get pedicures all the time because they have extra they have an extra person taking care of their feet or their hands,
50:01
you know, right. And it’s just really expensive to do it is. But
50:05
I’m saying that there are people that yeah, you’re really indulge in that.
50:09
And I found this another great product that was, you know, I could do in, I could just and this is for all of us. Honestly, it’s for all of us, I give everybody manicures and pedicures because I got this really great kit online. And it’s it enables me to just without spending so much money on manicures and pedicures to really when you think about the word manicure to like really take care of, you know, his feet. Liam doesn’t complain, but I can tell by the way he’s happy when it’s done. He’ll be like, yeah, that’s good. And then he likes it, you know, but it’s, it’s up to us. And,
50:46
and putting lotion on and rubbing feet. And so that’s a very nurturing caring thing. And Liam enjoys that to the enjoys that a bit of a bonding as well. Yeah.
50:57
And I think that it, it is something that hopefully, I will tell him, you know, when you get to be older, maybe you’ll just go someplace, and they’ll end up doing your massages,
51:05
you know, it’s like, it’s, you’re getting a lot out of it. But it’s also, you know, something that you guess you could do it at home, you know, and but maybe you need a little more help, don’t I mean, like, there’s definitely, you know, I know men that get manicures. And if that wasn’t even an option, they would be at home doing it. But, you know, they really need someone else to do this is
51:27
our self care segment. And I think I think but you know what it’s important, exactly know, as a caregiver, as a caregiver. It’s important that we take care of ourselves, but it’s also something that we want to teach our children. We want to teach them to take the time to take care of themselves, and how important it is. And, you know, to see the difference and to know why, like we we need that time. You sometimes I think with Liam it gets it, it got overlooked because he just didn’t complain or there wasn’t, you know, from the outside. I honestly didn’t think about it. Right? I just didn’t think about it. But now I thought about it. And I want to teach him to take time for himself because it’s along that same lines of he, if he can take care of himself, then he can take care of others. If he can respect himself, he can respect others. If he has healthy boundaries. He can respect other people’s boundaries. And I want to empower him to do that speech, he still receives speech therapy, speech therapy, new parents fight for that there is okay this is
52:40
there’s not a too early, timeless, there
52:42
is not a too early to tell you they do or die. There are more apps out there now that will help. There are books that help reading is awesome movies, you know, they tell you, Oh, don’t let kids watch movies. While movies. That was one of the first ways that Liam started to like repeat dialogue, closed captions, closed captioning, because they’re engaged, but they’re reading at the same time. So boom, reading and
53:07
reading to your child to start right. And
53:09
it helps with the language to come in. So speech therapy is so important. We have our beautiful friend, Julie pico that was just on and her daughter received the most wonderful speech therapy very early on, and I hear it and I already told her like I get jealous because you know, Elise is so young and her speech is there, because she had the support. So what is the difference? Don’t just believe what they tell you based upon whatever their belief is, go from the facts. And with the supports. First of all, in school speech is so important because you don’t know what someone knows unless they can tell you that’s what school is about taking tests. And all of those standardized tests are really based upon what a child can say verbally. Right? So there’s there are accommodations to go with those tests as well. Even though carpenter lied and told us that we weren’t allowed to be accommodated in those tests. To get us tough to also
54:05
speaking back to your teacher in a way that they can understand is right away, your teacher says oh, okay, well, I’ll automatically believe in you a little more. I mean, that’s, that’s it gets a whole wave of people behind you if you can speak
54:20
and communicate. Unfortunately, that’s how society judges us
54:24
with adults. I mean, if I walked into a job interview and spoke a certain way, I could look one way a spoken. Speak another way I could look maybe not as intelligent or not adequate for the job. So that’s just human nature. But speaking and speech in general is singing stream singing helps
54:43
like I love the fact I mean, I really wish we would have videotaped him learning Taylor Swift reputation, like the first time he sang it, and now like you listen to him singing songs, and it’s like onpoint can be fast. Yeah, it’d be fun. I mean, and it’s good. But it’s a great challenge. So what we another thing you can do is if you have one of those things in your home and they play music, the words come up. And so our karaoke machine, all of those things, these are things kids love to say have
55:13
an Alexa with like a screen, I was just trying not to push Alexa. Oh, that’s I was gonna be making people’s Alexa go off if they were playing this in their house, but to see a screen and see the words, and also actually speaking with one of those devices was a really neat thing for, for Liam to like, that challenge of like, can you make my light go on when I command you to, you know, like, it has to understand you. So it was a great goal. Yeah,
55:42
it there it’s a it’s a really great goal, I am so asked for the speech, advocate for the speech. And the just the importance that don’t give up there, they’re gonna deny you the speech a lot. Unless you get someone who really knows, and someone who’s new, and young, and inclusive, and diverse, and all of those great things where they say our child is equal, most of the time, you’re going to have to fight for it. So just don’t stop fighting for it just we fought for it every year until finally we got it and then we’d fight for more. And, you know, it’s just it’s, it’s worth the fight. Because it is probably it is probably the most important support, besides the supports to access the curriculum that I feel like for Liam, this one place where I feel very much so that the school system failed him and providing speech. But that’s just a very small part. And like I said, you know, you have the whole journey, and you have the things that can distract you, I can look back and know, I did my best, we’re all doing our very best. I just know sometimes that voice on the outside can be a little heavy. And they might tell you things. And I just want you to know that you just you follow your gut and you know what your child needs, you know what’s best for your child. I think about where we are. And I know we’ve discussed just like the changes that we’ve we’ve experienced. But this this was really I think this weekend, Liam celebrated his birthday by going to California Adventure, which was his choice. That’s the park he chose, because of the certain rides that he wanted to ride and goodness.
57:26
I was so happy because when we go to Disneyland, it’s 12 hour, 14 hour deal, you know, and there’s just less rides at California Adventure. And it allowed us to enjoy our hotel and allowed us to maybe cake take a pace a little slower, and not have to, you know, because that can be a thing where you go, Huh, we got this rather than that rather, you know. And so it was a really wonderful, like, celebratory, but at a really nice pace for us relaxing.
57:58
And there’s the shift to us.
58:00
times by the pool times the hanging out in the room, you know, like that kind of stuff? I mean, come on. I like it.
58:09
No, well, it’s self care. You know, and so, but Sophia, like for Sophia is birthday. She wanted to go to Disneyland and ride every single ride. And that was exhausting. But she sleeps on the way home. Right? Yeah. So we were happy when Liam changed because he was like, I like the cars ride the certain rides that he wanted to ride so it we didn’t, we didn’t show our excitement cuz I’m gonna tell you this. He’s a teenager, if he saw how excited we were for the change. He may have changed it back. Yeah. So we went and one thing that I I did experience, and I’ve been I’ve been working on it a lot. But you know what, Liam has a goofy dance he likes to do when he gets excited. And I was guilty of like, kind of being like, Alright, no, don’t do that. You know, people are looking or it’s inappropriate or whatever. But if I really looked around, every kid expresses themselves in a different way, when they’re excited. And I started to just see, like, through that lens of equality, that why shouldn’t my son get to scream? Why shouldn’t maybe his voice sounds different or his speech sounds different. Now, if it inhibits and goes into another person’s space, we can pull back and learn that that is the parameters. But one of the really big things was we were in the pool and Liam’s learning to swim he likes to dive and all of these things and there was a part for a moment where I was like, Don’t do that or not this or not that right. And then I looked around and there’s like five kids next to me like screaming and plan then this other little boy jumps in Cannon Ball. He’s probably I don’t know eight jumps and lands on Steven is like, Sorry, mister. I just can’t involve Hey, A blue a search like just talking. Right? Just it was like the pool party in Caddyshack. Yeah. And it was like and then there was all the caddies had to all the caddies were in the pool because it was like a more kid. It was more families than adults. And it was like, all these kids just sat and hid there. I am on Liam, like maintaining, you know, right or wrong behavior. But there is no right or wrong. Oh, it’s a pool. And like, oh, no, he has, he has something in his nose. And I look, and there’s an adult over there with this thing in their nose. And I’m like, Why? Why is it? Is it a big deal if it’s Liam? Like, I just like, remove that and just allow him to be messy and flawed. Just like, I want to be able to be messy and flawed. And is it a flaw? Like, why am I calling it a flaw? Like to just be messy? Yeah. Like, I want to be able to be messy. When I’m messy. I want to be able to cry when I don’t feel good. I want to be able to be mad or upset, or just silly. I want to I myself personally want to be able to skip down the hall if I have that much joy in my body. So I need to allow Liam to do that. Because
1:01:11
at higher bar, we talked about this set some times and sometimes by us, we set this higher bar. It’s like, wait a minute, no, he’s allowed to be a kid, he’s allowed to be a human,
1:01:21
he’s allowed to be messy. He’s allowed to just be I say every year that like just letting go of the that baggage that they gave me when Liam was born in the UK in the hospital when he received his diagnosis. I think I still like I’ll look around sometimes and be like, Wow, I’m still carrying it for them. And I think I said to you know, Liam’s allowed to do that. And I don’t like it was the first time I left the pool. And, you know, He splashed me I was like, Don’t splash me, dude. And he’s like, why? And I said, Because I said so. And I wasn’t afraid or aware of how anybody was, I didn’t look around to see who was watching. And it felt good to leave the pool, and then go to the room and go, oh, all that happened. And it was different for me. Because years ago, while it was happening, I would have been having those thoughts of who’s looking? What can I say out loud? How are they viewing them? How are they attributing this behavior, to Down syndrome, and all of these other things that really don’t matter. All of these distractions that distract me from the moment and the reality of what is right before me. And what was right before me was Liam’s 14,
1:02:30
it was funny how and in these birthday episodes, we kind of come back to the same thing, just how spectacular Liam is and just how present he is. And just how a matter of fact, his presence, in our lives and on this planet, is just beautiful. We always come back to, hey, this is where we are, and it’s great.
1:03:02
And if you’re a parent, who has been on this journey, for a while you, you probably already know that. You know, and if you’re a new parent that I want you to know, it’s like it’s this it’s a it’s a really beautiful journey. And it’s it’s the journey of being a parent, and having a child and watching them grow. But this this journey, you know, we learn a lot about our strength, it has nothing to do with the chromosome. You know, it’s the things that happen. Based upon the chromosomes are really things that are open to every child possibilities of every child, there’s there’s very few possibilities that happen just because of the chromosome that are specific to Down syndrome. And I say very few because I don’t I don’t know if there is something that only people with Down Syndrome have. I know people with flat feet. I know people with psoriasis, I know people with dietary restrictions, I know people with cancer, each there that needs speech therapy, and they don’t have Down syndrome, they don’t have an extra chromosome. So it’s hard to really like look and say this is just because of that chromosome. What it does, is it I think it activates us as parents. It activates a part of our soul. And it’s not what we were told when he was born. And and that’s really what we want new parents to know.
1:04:39
So happy 14th birthday, Liam.
Happy birthday, Liam. We love you.
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 