48. World Down Syndrome Day: The Path To Finding Our Celebration

Transcript

Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux. 

And I’m Lori Saux.

And today we’re celebrating world down syndrome day.

March 21st, 2021.

So what is world down syndrome day we’re celebrating and we’re talking about it this morning we asked herself what does world down syndrome day means it’s about awareness but what does it mean we hit we aim to celebrate the day but we haven’t in the past in the past it would get past us because our schedules were so full and to me that sounds like the lamest excuse if I feel like there’s something else there I feel like if the therapist heard me say that they just go mmhm tap their head on March twenty first it just never I guess it didn’t always occur to me yeah angry and then it was also a little confusing because March twenty first is world down syndrome day so I feel like March should be down syndrome awareness no it’s not no it’s in October so then it was just very confusing but then I’d mess up October as well you know at it in previous years ever get past us and it was last year and we really put it on our schedule because we were we were focusing on creating this podcast and we had the song chromosome that we thought well we went we first we intended to put it out on the Ms birthday but the schedule didn’t agree with us and we we were able to get it together right as the pandemic was about to take hold and made the music video and release that on the twenty first yes and just a couple weeks later we we started the podcast but it was a nice way of kicking it off but other than that I hadn’t really we had gone to a couple buddy walks that was on that weekend correct no there in October how YA okay when this are in this open confusing and it is to celebrate this it’s a celebration but the you know you have like March is women’s history month and during women’s history month our attention is drawn into the journey that women have had to get their liberties and rights add the right to vote all the women who have done these powerful things changed the course of history and gone against the adversities we find specific icons to talk about yes and we don’t do that during where are we haven’t or you and I are just kind of coming to the party and so maybe we’ve missed out on all of the accolades that follow but I think that would be that’s actually one of the reasons that we started a podcast so that conversation is actually a more fluent conversation it’s a more obvious conversation like the real conversation is there transplant a highlight of the Z. accomplice accomplishments yet which I really have faith that in the future we will have the go to names that are household names because we have the accomplishments even this year since we’ve had this podcast we’ve we’ve witnessed accomplishments we’ve heard these incredible stories of you know people changing the world through a I’d running iron man’s grat graduating from college is just the thing we do the reason why that is so great is because it is a thing that was denied for so long it was a thing that was denied and and boundaries were put up and so that is a great wasn’t in the in the fat it wasn’t to be fathomed it wasn’t something that was to be fathom by parents that their child to grow up and marry or go to college and that was set from birth so we’ll leave him in his first IEP for kindergarten they wanted to take him off curriculum input in our alternate curriculum put him on an alternate curriculum and you know when I asked what that did for graduation of high school ET they said well that’s probably not gonna happen yeah you wouldn’t get a high school diploma actually an official high school play and that was from like five so these accomplishments that were doing that some people would say like the Niro typical adult %HESITATION child that it’s it’s not a big deal the reason why it’s a big deal is because in the face of adversity in the face of being told you can’t not having the same resources or supports there and these roadblocks and to social perceptions and all of these things people are able to overcome and achieve and that is what is great because as they do this then it opens doors for our children for for Liam so many doors have been open because it is a conversation that’s happening we are seeing the stories now M. there’s a reference point and I think the story the celebration will be that these individuals were denied their rights their families were told that they didn’t need to raise them they were institutionalized they had to overcome it with no precedent that’s very difficult look at how much easier it is as a human race to see and accomplishment and for that to be celebrated and acknowledged right there as humanity you feel that can be done that is in the cards for me possibly and in real life we can go into our I. E. peas and those first initial comments that were said to us when we were still so new at this they have no legs to stand on and before we knew that they had so much more weight is that thing when people tell you know for so long and then you begin to doubt yourself so now we go back in M. we don’t have to carry that out because that that doubt is what is so hard to shoulder and it takes so much away from our journey and our experience at least it has for us and has in the past that might be one reason why our celebration or acknowledgement of world down syndrome day has been so quiet %HESITATION it is because it’s a very personal journey and it’s a personal experience and a personal celebration you know when when we’d say %HESITATION today’s March twenty first I think because I spent so much energy protecting them that it was us it was our day together and I think every day he shows who he is so world watch him every day not not just on this day he counts three hundred sixty five days a year not just on March twenty first his accomplishments are real three hundred sixty five days a year his abilities the love who yes as a human has value three hundred and sixty five days a year and I think that might be the weight like ins I think inside it wasn’t what it wasn’t a celebration as much as cached we spent so much time proving his worth and value but I’m so happy that last year we finally got our act together and were able to we had the energy I think it was just a different phase it was ten years I remember that we’d gotten through ten years and I will say those first ten years were challenging and they were challenging more for learning how to navigate society learning how to fight for his education reading all the laws finding out how to go into an I. E. P. letting go of hurt feelings when people said things that were inappropriate finding our way through anger all of those things were in the first ten years so I think you know definitely when Liam turned ten that was a turning point for us millions spent on the same path Liam has been consistently on the same path it’s us right right and then after ten years it was like okay wait in January because I have to plan ahead let’s we thought we’re going to do something to celebrate this year to bring awareness because that to me I had to understand what I meant I had to understand what I wanted to bring awareness to and then we were able to start this podcast and I’ve been excited to see all the events leading up to World stands adjourned dates it’s really turned into an entire month to twenty one days of March especially on social media I see so many groups that opposed the fact every day or highlight an individual with their sibling or talk about misperceptions it’s really a great social media event especially now where in a lot of part of the world you’re not getting big crowds together but it’s I’m excited for this for this world dance from day I’m excited for this community I’m excited for where we’ve come from and where we’re going I just see a lot of momentum and it’s it’s beautiful as I see it in a lot in a lot of our culture and and I’m glad that there’s so many of us that are advocating I think that when you start to see the change not only the change but injustices being rectified when you see people finding their voice because I will say that one of the things I didn’t have I didn’t feel like I have I didn’t feel like I had my voice because my words were often scoffed my thoughts and hopes and beliefs for my son were dismissed and so it started to rob me of my voice and my hope and my intent and little moments and when you start to see that change and I know that when you’re talking about you’re talking about in a society as a whole in our community as a whole to start to see all of these beautiful posts and videos and documentaries and stories and people who reach out to us with these just wonderful stories and and that’s on a global level but personally for me I can say the same thing like I’m happy to see that I found my footing I can I can advocate for lamb I can create a foundation for Liam that comes from knowing and a piece and entitlement and that’s not in like the bad version %HESITATION meaning of that word where sometimes entitlement can come across entitlement like deserving for heat light and deserving of what we’re we all deserve it’s I don’t wanna say entitlement that’s an empowered empowered to stand in that place to stand there and be there and allow all the other things that come at me to be there as well and just not beat me up right not not limit my child so it’s when you when you talk about how wonderful it is to see our society in our community changing I also M. really excited for us as a family on a personal level to be absorbing that change to be creating that change in our own lives to be taking our power back our voice back and I like that I think that’s part of my celebration is %HESITATION right we we were we went through some stuff and I learned a lot and what I can celebrate I think that’s it it’s the celebrating of what is it celebrating Liam as a human being who’s gonna celebrate him and celebrate everyone who has that extra chromosome who’s fighting false perceptions who’s constantly having to prove themselves and say you don’t have to prove yourself to anybody like I said it’s a FIA you don’t have to prove yourself to anybody but yourself that’s it should anyone have to perverse off to meet just herself just be happy with who she is I think of Liam’s pay office he just works so hard and he’s worked so hard his entire life I mean just every day pushing pushing and you see the change in he knows his accomplishments and what he does and and the changes making and he’s proud of that I don’t think he realizes how hard he has to work to get certain places I think he knows how hard he works I think he thinks everybody else works that money I think he doesn’t realize that not everybody works as hard as him right right well you know I just recently with the cello so we started this year’s fourth grade and he had the option of joining orchestra at his school we chose the cello for some reason Sofia plays the violin and that was an issue that we like but to me I felt like there was a bit of a possible physical challenge while holding the violin upright with one arm to me the cello was more something you can it rests on the ground can a wrap around it you have to keep your hand holding the knack and keep it in control but I saw it as more of a something he would enjoy and we started with plucking he really did well what plucking talk about just in your mind thinking O. T. P. T. right sorry I’m thinking standup bass really hold right as like a standup bass yeah %HESITATION Liam in a jazz club which is %HESITATION singing the blues but he had to there’s a D. string and the D. strings all the way on on the opposite side of where his hand is when he’s holding the bow and it’s very difficult for him to get to and the archer teacher was really intuitive and in just making a little adjustment so instead of hitting the D. string and the a string first we’ll just push over closer to his hand where he does have to wrap arounds far and we’ll do the a string and the G. string and it was just I just changed it was like wow he he saw that he had to struggle so hard to get to the to a string that he will get to right but we’re this is our first few weeks of cello let’s make this a little easier way for everyone let’s let’s let’s see some fruit of this work and how it he loves to hear the the sound it is very difficult for him to hold down the strings hard enough long enough to make a lot of notes in a row sometimes but he knows when he doesn’t make the note because our and here it was Santa few times like %HESITATION that’s on a weird number and then he would push down harder and so it’s a great workout %HESITATION it’s a real physical work out but it was a I think a good choice but he works really hard we may do twenty minutes twenty five minutes at a time for a rehearsal and in between those breaks and he’ll shake his hands out and then I’ll take the cello and he can model him model for him and he and he likes to to to hear that and it helped correct me if I’m doing it wrong but I really saw just the last few weeks of man he would just put his nose to the grindstone eight and I know it was not comfortable for him to press at hard in to hold those notes and that bow that long and it’s painful it’s a work out and he really wanted to make the note so bad in and he was and it was so wonderful to see how hard he worked in yeah you may be right you may think that everyone is like this Alice art but he are you guys doing I can tell you in his class they’re all working but you know Liam can get a good sweat by working he is really pushing it and he doesn’t distance learning you’re probably one of the only kids whose parent is right there yeah pushing him and that says a lot to inclusion to an inclusive model to the orchestra teacher she never blink an eye about including him in class we signed him up to his class teacher said okay and I think they should be afraid to tell me no because I go why and so they know that question would come so I’d like to think that she’s actually really good with inclusion I believe that it should I think that his teacher really does include him in a way that’s in a way that so phenomenal because when he’s in class and he’s got all of his supports there I mean math becomes so easy and doable and I have to think that there’s some kid in there that it’s like this is really hard and she calls on them and he’s always right there because lamb is always prepared he doesn’t get the same you know we do and %HESITATION I drop my pen he doesn’t he doesn’t have that option so he’s always ready to answer every question which is why we need his work ahead of time so he can know what’s coming and work on it but he’s always ready to answer and I have to think that there is some kid in that class going hand lamb socks is good he’s on it he’s on it and and how inspiring is that for other children to see and go okay I’m gonna work harder like how how does that how does that not inspire other children and how does that not change the perception of down syndrome because they probably all have their perception of what it means to have down syndrome they probably had him at the beginning of the year well their perceptions are changing and they are right on this is actually yeah another student in the orchestra class right and I’m talking like classroom too but I but going back to the kudos for the orchestra teacher I mean she’s always been inclusive she didn’t that’s what you want she’s the perfect inclusive model because it’s never been a thing it’s never think she definitely doesn’t take it easy on him she doesn’t you know a lot of times people go oh well you just have to do that but she doesn’t she hold him to the same standards and it’s lovely just an artist right art is inclusive she knows it’s hard for every kid it’s hard for any adult if I wanted to pick up the cello you know what my hands are gonna hurt everything it’s going to be a challenge he right so I think’s like that’s a celebration celebrating seen inclusion after you fought really hard for it he celebrating senior child be in an inclusive environment and be able to now that he’s getting to be a young adults be able to start to see the fruits of his work right because kindergarten first second and everybody’s still developing in a different way but now he’s in fourth grade and he sees that he wants to read he reads he pulls out the answers he’s working and he sees himself grow it’s great ask him the other day how school was and how do you do with math and if you’d like to map the news like yeah I like math so I think that’s what I will celebrate is now where he is all the changes that have that have happened and they’ve happened because of everybody who’s come before him because of every person who’s ever spoke out who’s ever stood up who’s ever today dared to go against what they were told their limits would be that’s why we’re seeing this change and that definitely is a reason to celebrate it’s a reason to celebrate that his life this life has the same value as others and we say that because you know when he was born we were led to believe that his life was going to be a lesser life we were led to believe that we had to prove and justify our son’s existence and that he was a burden not the asset that he is we were told to mourn our son and I think that’s what most parents of children with down syndrome are led to believe and that’s so ridiculous right sell world down syndrome day we celebrate what a wonderful experience it is this road this journey this life this relationship where I’m constantly learning these stories are being told now and honestly they may have been told before but I wasn’t hearing them because I’d put my nose to the ground and I was forging forward or trying to forge forward we’ve never been a village type you know when they say it takes a village but community is so important community is strength and power and support when you don’t think you have any and those stories that are being told they changed the journey for all of us they changed the expectation they change the challenges and so I celebrate every story I don’t like to focus on the negative I don’t want to focus on what they told us we couldn’t do I want to focus on the celebration is that we do we did and we are and it will continue to change and we will continue celebrating March twenty first what down syndrome day because I think I might have finally got my act together happy world down syndrome day.

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