Hello and welcome to the If We Knew Then Podcast I’m Stephen Saux
And I’m Lori Saux. Today in honor of Down Syndrome Awareness Month we will be talking about what it means to do our part to change the perception of down syndrome this is a topic that we tapped in on in our conversation with Eleanor Baggaley the author of AVA THE MERMAID.
Yes something that as many parents that are listen to this it may be the same it’s something that we obviously didn’t dedicate time to until we had a child that had down syndrome but then we found ourselves in a place of witnessing injustices %HESITATION inconsistencies that we then took maybe more personally and I think that was a decision that we made to actually try to make a change in our community and and then our society yes like you said before Liam was born we don’t really know anything about down syndrome except maybe a few stereo types that were out there but those stereo types are really what are prevalent and then when Liam was born and I went to look for information still it was just the stereo types of limits and it didn’t leave much room for hope so we have these conversations about the perceptions that are out there and one thing that a light has really been shown on is our part in changing that perception and you know we do this podcast in hopes of changing the perception of down syndrome putting information out there not only did just to everybody to help parents like information for you that I would have liked to have had when lamb was born information about services R. O. T. or milestones and all of that but more personally more accountability for myself is just my words because I have these beliefs and I’ve made these promises to Liam about raising that bar ends supporting him and giving him a foundation to reach his potential and fighting as much as I have to just for his education one and that’s a big place where we see the misperceptions that are made of our son and I think that’s when it becomes really apparent because honestly when we’re out in the world we can choose to go down a different street we don’t have to go to that grocery store here we don’t have to listen when people say stuff we don’t have to buy into or care about what other people think I think when it comes to the school system those perceptions have such an impact on our son that we are constantly having to prove him and ourselves no one should have to go through their life having to prove who they are that all the time I mean if you are applying for a job and you want to prove you’re the best candidate that’s one thing but to prove your worth and value constantly as something that is it doesn’t feel good and it’s definitely not right because everybody gets to live their life right I get to live my life and as soon as I walk out the door I shouldn’t be having to validate myself to you but in the school system we’re talking about the school system it’s from even preschool because even the fact that Liam had to go to preschool I wish I would anymore then because I don’t know I think I would have just opted to get his services because I had all that bonding time with Sophia because Sophia refused to go to preschool every so often she’d say I’ll check it out and then she’d go to check it out and she’d say not for me and she got away with that we decided O. okay that’s what she wants that’s not the fight I’m gonna take a joy being with her you know and that was in the fight I was going to make %HESITATION I didn’t want to have that struggle everyday of dropping off and I knew if I waited till the first day of school when it was she had to go which she did say I’m never going back and I said no you are because you have to it’s the law but even just the fact that Liam had to be entered into the school system at the age of three and we missed all that time with him I would think I might go back and do that differently to be honest and find a different way to support him on my own instead of just having that challenge right away and really being open to up to what those perceptions and some of the things that were said to me I don’t I don’t know if I would make that choice but since I did make that choice and you’re in the school system and you start to see what people think downs and remains and it’s never right I don’t think I’ve ever run into anybody on the outside that didn’t actually have someone in their life that had down syndrome that had an accurate view or shared my perception of women has possibilities so that’s inevitably going to have it’s gonna grain away or it has grained away a little bit and it’s not until I guess just recently with the pandemic and having so much time for us to sit and talk that we’ve really come to understand our active role in changing that perception goes beyond you know putting this information our doing this but it’s a daily reminder to you know what words in my using not only with lamb or for lamb or in the school system but in my life however my talking what thoughts do I really have how have they changed or am I still on the same path and it’s just it is checking them to make sure that I’m definitely present and my communication elaborate on our present in your communication that I am present like %HESITATION okay recently what I realized that it was I think it was the day of the I. E. P. or the day after the I. P. C. spend all this time prepping and doing all of this work and then you’re in the I. P. in here all this time and all this and I was doing the online order because we haven’t gone into any grocery stores in the last six months and lamb sat down beside me and he loves to participate in that order the grocery order which is fine and I stopped and I just looked at him and I felt like I hadn’t looked at him I hadn’t seen him in awhile that makes sense I haven’t seen them like I see him but I haven’t seen him because I’m usually doing something I’m I’m prepping something and breaking down homework is figuring out a support making sure that when he’s talking to make sure your ticket lay or repeat this or doing sign language or what there’s always there’s a mechanism thing that’s being done well it’s probably a pretty common thing in life no matter if you have someone with a disability or not in your household that you’re working a lot in the house and you can kind of get consumed by life and not B. as present as you want to be N. T. products did you find yourself present and just kind of seen him like taken the timing a wait and let that other part of the world slow down for a minute yeah because there is more things that I had to do than just that list but I took it as a time to have a conversation with him and check end like are these goals that I’m pushing are these my goals %HESITATION these Liam schools you know his tan so if this the academic goals is always gonna said rather do you know any legs of fear will watch a movie all right was to play with toys or something right but am I actually present and money there’s there’s such a fine balance of MI actually pushing him to his potential or am I pushing him to my idea of his potential and I just sat with him and talked with him and but really talk to him the queen really communicated with him made eye contact all those things that we do when we connect and I realize you know like I said with preschool I had so much time with Sophia to connect and be there but a lot of that time has been taken away just because of just the logistics of even all the services that he had received a lot of that time was taken away so that connection that rail connection of sitting and just even if it’s just quiet or talking or discussing something without a goal without some I’m doing this to get this I’m doing this because these are the words you have to say I’m doing this you know it was just we were there and the pace slowed down and I looked at him and we were just talking and I realize that I don’t do that enough and that there’s a really good chance that I don’t always see him or when was the last time that I actually saw him and I hope that makes sense because of course I see him but just saw him wasn’t there with him was present with him do you feel that what Sophia sometimes are did you know that no I don’t I feel like I even even as a teenager even as she enters into a teenager I feel like we have that connection because we had all those years of just making a connection and it is a little different you know I’m not always just I guess I’m not always just pushing her towards a goal I’m able to be present with her were able to just go for long walks and she talks about you know sometimes the same things over and over like it’s just where you know she just I just let her talk but with Liam that doesn’t doesn’t seem right I don’t really feel like I’ve gotten that with him like I’ve done that I’ve taken that time I’ve so it’s a new goal for me if I knew then I would take those moments of just just like I got the mall with serve with Sophia one of my favorite memories of a visit with our friends and Kristin and uncle Nathan was walking in on a conversation that Kristen was having with lamb where she was asking them questions and just talking to him what you spend a lot of time working for him setting up things for him and so working with him are you work with them at that still work working for him right but a distant friend to do we’re gonna do a speech therapy right now then he tell me about Iron Man yeah instead of %HESITATION he’s pronouncing this right or he knows this number or he’s adding this correctly or he’s reading this book academically you look at the mess Hey let’s talk just like we’re talking you know and and that’s not just because of his older you’re saying this is something that you that is Franz again I agree yeah we we would have conversations and in and I think that’s that’s what’s very difficult about well one of the things is very difficult is you work really hard for your children your children and you know it’s up to you no one else is doing it and with a child with down syndrome or another disability possibly %HESITATION the work it could be more and also it seems a little more intense as a parent because like I said if you’re not doing it who are doing it yeah and you think of the things that we advocate for no one else is going to advocate for it unless we do our our community does because society just goes as the majority and we’re not in a majority of people and so and that minority that were him often the people that are actually the minority don’t have the voice to stand up I mean Liam’s only ten years old he can’t talk to the school board now so not yet but we see adult advocates and that’s great that’s wonderful but until then the burden of change is set on parents mainly I’d say and then also you know %HESITATION anybody close to even educators at our clinics on that responsibility right whoever chooses right and so there are some parents that will not use that road and that’s fine that’s I mean change happens and there’s some parents to really get involved in in what do I want the judgement though because I think I mean honestly at the price of always pushing you do lose those moments sometimes I realize that now looking back I realize that I’ve lost some moments because you have a finite amount of time you have an hour are you going to eat you know you you that our needs to be implementing a service during the school work because school work is about reputation and and working more on one thing takes up the time instead of just having that walk around the block I got to tell you one of the best moments last week are Liam and I went for a walk around the block because he wanted to walk and it was late and dark and I said well let’s do it in the morning wake up early and in the morning well a morning where it sometimes it’s difficult to get a single gala yeah and you just mentioned Hey you wanna walk boom he popped out of it didn’t right and it was beautiful it is beautiful because honestly there’s a part of me you know the reason why we don’t walk at night is because not everybody in our neighborhood wears a mask and at night I can’t see necessarily how with them coming all the time especially from in a conversation and I just there’s too many unknowns that I don’t wanna put myself in a situation that’s just not a good situation so I said we’ll walk in the morning and there is a part of me that as a parent like my heart ached a little going out please remember you know or will he want to or whatever it was and there was a part of me that you knew I was taking a chance %HESITATION felt like I didn’t know it I felt like I was taking a chance just saying okay will do how about we do it tomorrow morning and it was almost a test right because it’s the same thing I would have said to Sophia and I’m such a big person on I’m gonna do for lamb the same things I do for Sophia and I and it was a chance I was taking because he’s ten now and that’s something that I can’t you know that’s it now we’re getting into years where I can do stuff that I did with Sophia but there was a part of me that when I woke up and I’m like alright because I went I had a conversation with him about you know you might say you’re too tired in the morning or you might this it is like now we’ll walk and the joy that I felt just even when he got up and he wanted to walk in in his pajamas you just put on issues and it was really a great moment of just walking with him around the block first we sang and just not having anything else in my mind just to be with him and to enjoy that walk and whatever had to be done or whatever needed to be done with the school work that lie ahead none of that I didn’t bring any of it with me I just said we’re gonna walk just like I do with the via and I was pretty outstanding it was such it’s it was such a fabulous moment and it really I think it put both of our dates you know and I think he felt that the keynote like there’s you know we don’t talk about do you feel like you’re connected with math today we don’t talk about that but I felt like it was a milestone for me I feel like you get these and we get these moments in the summer we take a no nice summertime to off to to really spend with each other but the school year get so bogged up with work I mean like that’s use of the time we work as adults as well so we usually get summers off so we do get to indulge in that summer but we work in your working right now and it can really strangle that connection sometimes yeah I think so in the summer too like Liam is always working he’s always working yeah and it’s kind of what motivates Sofia because she can’t say lamb doesn’t do anything because lamb is one of the I mean he’s one of the hardest working people in the house he’s always working and that was one of the points that we made in our I. U. P. is when they’re trying to say oh well he can’t sit still and it S. like no that’s garbage Liam works he works really hard you put a bar up forum and he really reaches it and you know he has the ins and out of any ten year old words sometimes is doesn’t want to do it and that’s understandable but course eventually how much reporting on this plate but it doesn’t happen often and also in a pandemic when you do it we don’t we haven’t even factored in the impact of a pandemic of not being around his friends are in a social setting or any of that right they both disposition data yeah so we’ve been very fortunate but so those are two different things as far as my perception that when I stopped and got still I can say what is really my perception I am I really following these words or or if I just found a sound bite and I keep repeating it because it it does become a sound because it is like you say it so often especially every year in your IP no matter how many times it would I whatever you’re just saying that so am I living in is it really how I feel up we’ve had some really great guests on the show like at casa Grande’s from where he was from the Canadian downstream anything is working with local to do %HESITATION the A. I. and I remember speaking with him and his daughter is younger than lamb and he even corrected me I noticed that I I spoke with some limits even though I don’t feel like either with any limits on them and he corrected me I can’t say the exact phrase I could go back and listen and I remember in those moments going yes it was it something a phrase you would maybe set your vernacular and then it kind of made us out and then yeah the kind of let it guide your emotions to guide your intention but it’s no longer appropriate it’s not a longer signified because so many things have changed in them has bought gone beyond that and society’s gone beyond that and we have this great community and he kind of correctly corrected it or said from where he comes from and I was in that moment I just it was so inspiring because I won I was reminded and also like a breath of air was like login into my words because at the time I think those words or thoughts were formed they were very progressive but now if we’re really going to be progressive this is the way we can think which is funny because you think that when you’re pushing beyond limits and Anna’s stereotypes and perceptions that you have this place that you’re coming from but then you can still settle you can still settle and if I’m not present then progression passes me by are my words old or is my perception %HESITATION do I need to blow some life into it and MI without thinking about it still now putting different limits on him right and I see the same mmhm and and I think what’s really prevalent as we go on these pages they support groups and most the time I go on the support groups to see if there are questions or if there’s any way that I can help and a lot of times what you have seen in the past weeks are people speaking these limits from a long time ago these are these are just words but they yes that is a word that seems so out of touch to me now but I think it shows it for the advocacy that we’re doing as community we’re not changing the community totally like it’s not like we’re all changing at one time like okay here we are where we are all thinking alike I mean it there’s still buying into some of the things that we’ve been told yeah well because I think it takes these moments like you have what ed you know there it takes moments we have together it takes this affirmation of what we’re doing for to spread that makes sense that we can say all we want to ourselves but how do we change community I mean we have to change our community at the down syndrome community to then see an ultimate change in society rand that’s all going to come at a different pace that you know and it does come from this community it comes from the words that we choose and what do we think about our siblings our children our friends what do we really think and how do we speak that and are we and every time that we repeat some sound bite from some archaic belief of limitations or what what’s possible because that used to be that’s still of that that’s a valid question for anyone will they be able to I think about Sophia will she be able to now that’s and that’s that’s any child but it that question bear so much more weight in our community and I and what sometimes makes me sad is the constant belief that there’s so much that we can’t do right and I see it I hear it and we have I mean just the people that we’ve interviewed we have all these great stories but they’re not reaching everyone so there still people who well my hate will my child drive a car can my child get married can they have also if these things and yes yes yes yes they can and I think that’s what we were talking about on our bakaly we had that conversation is yes the answer is yes and we have to start believing yes one the flip side I think words can become this redundancy of positivity possibly that doesn’t actually have traction I mean even in a vertical get your kid can do anything they put their mind to those are just words that parents say sometimes but they are true word totally true but I’m saying the parents don’t always find it true and so then where’s the traction right so if even our community can say oh yeah I believe my child can do anything but then there’s the doubts and even even when you say well there aren’t in there gase is right there are a few cases of of a child or an adult speaking from a Congress during Ironman getting a driver’s license getting married to college having a child exactly but it’s still it’s Donna from these parents as I’m well that’s the that’s like sand well of course there someone’s gonna be Xander anyone we don’t want to be a professional football player but that’s probably not me my kid you know that’s the thought so that is where we can lose our traction and and we truly don’t believe it I think we say the words as I’m just talking as community I truly believe it we’ve met too many people to not believe that but here it is though but to believe it and then to live it because I said that’s what I was just saying about my experiences I believe it and then sometimes I still go oh gosh I haven’t really been living it I haven’t we I had to take that moment to stop and connect this is as the Oprah aha moments where you like you see Liam for who he is you know really see him and then you hear a guest slightly correct your words and your weight and my really coming from where I’m like just a step back I think that’s so healthy mmhm in every aspect this aspect of your life but to actually talk about it now too isn’t that and we can spread that word of just yes let’s take process is not that you were not perfect we’re we’re finding this process we have we have an intention in our intention is to give them a solid foundation to believe that he can do anything he sets his mind to to knock down the barriers that are put up there by these perceptions that are misperceptions miss misconceptions and that is my ultimate intention but sometimes I have to step back and stop in and think am I living that yes because that’s when you say am I just talking earlier my believing and doing right so all the words just used words we’ve said literally hundreds of times on this podcast well I do edit these episode L. but that’s how we talk out of these podcasts too that’s how we talk to our friends but when does one of those words sometimes lose their meaning because you said so many times right we have to step back and actually present and be present right and believe that and re re affirm so then you can advocate with this whole new fresh feeling of yes I’m re energized to understand these words are true I’m not just yet kept saying I’m additionally saying yep yep yes initially has any of them well that’s the thing is at least when you’re yep yep saying that these are the words are yep yep saying exactly and you’re not exempt that does spread a good positive energy to other people and if it reaffirms for yourself but you still need to take the conscious moments of understand those words words and really so glad you brought this up and the truth is is that if we as a community if I if I don’t believe it if I speak other words how am I going to change the perception from for the outside Genena mean I can’t you can’t change anybody else’s mind they have to change it so so my words are so important the way I speak to I go well we’ll see a great example is Chris Nick and our interview with his parents and his father believed in the definition of special that was placed on Chris and people treated him special and it wasn’t until he he changed the way he he saw and talked about a son that he began to see see Chris’s ability increases is now training to run and and Ironman he’s already completed a half Ironman you know that’s why I think some of the the pages that they see people writing and that I mean there were some pages where %HESITATION grandparents that I wouldn’t wish this on anyone and it’s so sad to me because like we’re watching the family stone this is a good example and you know they’re a tech dinner table and and that’s in that story one of the sons is staff and has a partner a same sex partner and Sarah Jessica Parker is talking to the mom and the mom says I wish all of my children were gay and %HESITATION Sarah Jessica Parker goes you don’t really wish that do you I mean you nobody would really wish that on there and you know it S. I. I love that moment because Diane Keaton’s reaction as likes you stop and they just tell her to stop because from the outside this person is going you don’t really wish them to have those challenges do you and it comes from such a place of not understanding that one we all have challenges so you can’t just look at something a situation that’s different S. and say I wouldn’t wish that on anyone because you’re you’re obliterating an entire life an experience like this is a beautiful life and and beautiful human and they just have maybe challenges that are a little different and grandparents are far enough out of it sometimes that they aren’t just they’re gonna make a note of the of the welfare of the grand child they have their kids they’re probably saying hi I didn’t want this for them because they’re not totally experiencing down syndrome no they’re just experience from the outside and they’re probably experiencing a lot of the perceptions from their friends and their community you know and it said there’s a whole there’s a whole bunch of I definitely reasons that people on the outside might say these words but the reason I love it and that movie is a because it points out that that is one of the most inappropriate things that you can say from the outside as I wouldn’t wish that on anybody because you don’t even know but what would you wish on someone we do not wish a joyous life would you not wish this this beautiful relationship and this journey that is so %HESITATION we’ll have to relinquish so much to get to that point had to relinquish some much of their of their thoughts how they grew up with what they what hand life is supposed to be then don’t say anything if you don’t have anything nice to say and what I think about is how does that affect the kids and the parents and the grand children and even if it’s not grandparents could it because it could be a family friend it could be your best friend it could be anybody but when those words are spoken now the parent or at whatever the relation is or the person themselves they’re now they have to carry that that burden of this outside perception and then that becomes a little bit of their words so maybe they speak with those words so those words kind of %HESITATION there’s an infestation of this negativity and then that’s what keeps us bound to those limited perceptions when and then also on the flip side again I I we see I’ll see parents as well say similar things and they’re looking sometimes they’re looking for just yes me too and that and to me I think maybe some of that can be healthy just read the recognition of yes or all these both together but but there needs to be a balance because if we just spiral down into that I know then we’re not making progress yeah we do that we’re just going to counts of that get even deeper into this depression or this feeling of negativity so yes I’ve been there I’ve been there you say something that Hey I just wish this right sometimes I feel this isn’t and it’s a negative thing yes I’m with you I feel that sometimes too I have felt that but yes I I think there needs to be it’s a healthy to say but it’s a moment this is the moment and we can move past that we can see the the the positivity and we can move toward making a change right if that’s not said we are not making progress as rainy as a hundred percent believe that and I have plenty times responded on on different support pages of yes I felt that to understand though there is a good message here and I’ll say it and it may be even an example from a podcaster example from my own life and I’ve had positive feedback from that but I’ve also had a lot of wait I’m just here or that person just here to to just venting can’t we all just say yeah and some somehow sometimes that but feels like they’re being judged for what they’re saying and that’s not judging at all it’s that we need to raise our we need to hire each other yeah we have to raise but we’re a community and the thing is is those thought patterns one no judgment at all we all have challenging days we all have but just know that’s with any child that’s with any relationship those are all challenges but if we get stuck in the challenge part of it that’s what continues to propagate the stereotypes and it’s not fair that everybody is allowed to express themselves so if someone who’s stuck in the muck and the mire and then you come with that yes absolutely I know we all have those hard days just knows this or I I know some people have said you know if you keep believing that then how do you expect your child to achieve anything but what you believe because you believe for them first I think that’s a conversation and I because I think it’s a two way street that’s the type of conversation maybe my positive maybe I know I’m hopelessly optimistic and all areas I’m hopelessly optimistic when the weather says it’s going to be honored twenty that I’ll find a way to keep cool or they’ll be a breeze I know that and I know it’s annoying sometimes to people I’m I’m not trying to change anybody but the ramifications of somebody just propagating the challenges of it all are on the entire community and then the propagation of the stereotypes that we are constantly trying to break yes I’ve said it so many times I I would never tell a typical child mine or another child that they can’t do something and it’s something that we’ve all accepted a society you don’t say you can’t do it you say you cannot where they work hard enough or you say okay even in your mind if you say there’s no way that this kid is qualified to do this when I just don’t see you’re not going to be the next Einstein sorry right you could they could find but yes you could they could you tell them they can’t darn sure they’re not going to be so we need to transfer that into children that learn differently we need to %HESITATION and inside it has different we can’t and I think I think it goes across the board one we’re all different but our words are seeds to get planted and I’m so cautious when I talked to Sophia about anything like I’m very mindful of what I say I am very very mindful the tone I use the words I choose those are seed to get planted in her and sometimes I even go Hamina say this wrong maybe so what I want you to really get from it is this and I apologize if I’m not using the right words the one hundred now and it’s the same way I need to approach them and as the same way that I do approach lamb you know like I just said I’m just finally to the point where I’m taking the moments to actually put everything aside and have those conversations but it is the same way those seeds will take place and if I don’t believe for him then he won’t play for him and by the time he gets to the point where he can make that choice on his own he’s already got so many seeds planted in them that make him think that he can’t do it then it’s going to be really hard to uproot that that thought pattern I really don’t want to offend anybody and I did and by no means of my ever judging anyone because being a parent is just a challenge no matter what that is that is a a different journey for everyone and everybody does what is best for their kid but this what we’re talking about today is our part how deep our part is in changing the perception of down syndrome to make more opportunities for the people that we love in our life that have down syndrome and part of that is being mindful of what we speak any even if your beliefs are one way just be mindful of what we choose to put out there because our words have so much power they have power to convince ourselves of something so to keep that belief system going to make other people think certain ways or to create an illusion of or ape to paint a picture of something it’s a real power that we have and we have the opportunity every time that we talk about down syndrome and our experience and in no way am I trying to pretend that there aren’t challenges so many challenges and everybody has different challenges but life in itself is challenging for everyone everybody has challenges so if that’s all we focus on when it comes to down syndrome then that’s that I mean that is what I received when Liam was born that’s all that was out there where the challenges and not the beauty and not the real relationship and possibility and potential none of that was out there and I do want to change that for for new parents and for new families I want to change that for them that’s our responsibility as we move forward to make it better for the people who come behind us it is a real responsibility as humans to lift each other and if you’re having a challenge that you can tap our inbox we will try to lift you with our words and our experiences and like we said we don’t have all the answers but if you have questions we’ll try to find it for you we’ll do our best because that’s our community we’re all in this together and we all do a fact we affect each other we we have a profound impact as human beans on each other we’re working to change the negative perception of down syndrome we have that power and we participate in that event we’re not just bystanders where participants in that process I know that with every word that you speak I never thought that you think that power lies in you to choose your focus to create a new perception. A more accurate full perception of what Down syndrome is.
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