Voices for Voices®

Understanding Down Syndrome: Breaking Stigmas and Building Support | Episode 184

• Founder of Voices for Voices®, Justin Alan Hayes • Season 4 • Episode 184

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Understanding Down Syndrome: Breaking Stigmas and Building Support | Episode 184

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Chapter Markers

0:01 Understanding Down Syndrome Advocacy and Support

12:02 Journey of Parent to Advocate

19:08 Promoting Inclusivity Through Advocacy

28:05 Voices for Down Syndrome Advocacy

Robyn DesJardins joins us from the Columbus area to share her incredible journey as a parent and advocate for individuals with Down syndrome. Robyn's story began with a neighbor's daughter, but it turned profoundly personal with the birth of her son, Maxwell. Throughout this episode, we unravel the complexities of Down syndrome, a genetic condition affecting thousands of babies each year, and dive into available resources like genetic testing and organizations such as Down Syndrome Achieves that focus on specialized medical research. Robyn's insights remind us of the importance of early interventions and the power of community support.

The path from a parent to an advocate is often marked by emotional upheaval and profound personal growth. Robyn opens up about the initial shock of a Down syndrome diagnosis and how these emotions transform over time, leading to empowerment and advocacy. By sharing personal narratives, individuals can create safe spaces for others to express their experiences. This episode underscores the impact of connecting with others, both personally and professionally, through public speaking and storytelling, to break down societal barriers and foster inclusivity.

Advocacy, kindness, and understanding are powerful tools in promoting inclusivity for individuals with Down syndrome. Robyn emphasizes how small gestures can pave the way for a more inclusive community. The discussion challenges common misconceptions and highlights the vast potential that individuals with Down syndrome possess. For those eager to expand their knowledge and contribute positively, resources like Down Syndrome Achieves and the Down Syndrome Association of Columbus offer invaluable information. Join us and be inspired by Robyn’s journey, as we explore the broader movement towards a compassionate and inclusive society.

This episode explores the journey of raising a child with Down syndrome, focusing on advocacy, support, and the importance of kindness and understanding in fostering inclusive environments. Robyn DesJardins shares her experiences and insights, encouraging others to educate themselves and approach differences with empathy.

• Discussion of Down syndrome and its implications
• Robyn's personal journey and experiences with her son Maxwell
• Importance of community resources and support systems
• Emotional challenges of parenting a child with Down syndrome
• Transformation from parent to advocate for others
• Key strategies for fostering kindness and understanding
• Encouragement to educate oneself about differences

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#downSyndrome #inclusion #accessibility #awareness #community #acceptance #empowerment #diversity #equality #supportNetwork #mentalHealth #neurodiversity #advocacy #socialImpact #fundraising #breakingBarriers #buildingBridges #socialChange #inspiration #changemaker

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Speaker 1:

Welcome to another episode of the Voices for Voices TV show and podcast. I am Founder and Executive Director of Voices for Voices, justin Allen Hayes. Thank you for joining us, whether you're watching or listening to this episode or one of the over 150 episodes that we have put out to date. We couldn't do this without your support. We are reaching 50 countries, 500 cities. It's just incredible. If you could like, share, subscribe, follow us our show, we would greatly appreciate it so that we can continue to share the great content. It so that we can continue to share the great content, the great guests, the great information with you and with as many people as possible, with my overarching goal of hope and to reach and help three billion people over the course of my lifetime and beyond. So it's a huge goal. Can't do it alone. Thank you again for your support from the early days and until now. We wouldn't be able to do this without you.

Speaker 1:

So our guest today is joining us via Zoom from the Columbus area.

Speaker 1:

We worked together, not say in a prior life, but in a prior job, prior company, and as we separated from the company in kind of our own ways, as social media kind of does, there's information that gets shared about your contacts or connections, and there were a couple of posts that caught my attention. I was hoping I was going to be able to have her on to talk a little bit more about it, but the topic is Down syndrome. We want to highlight that with this episode. We want to highlight that with this episode, our guest will be sharing her experience, how she learned about it, what it is all the way, and then we'll close out by her advocacy of going from learning about what is Down syndrome, how it impacts her family on a daily basis, and then how she is like today being an advocate and sharing and educating myself and all of the people viewing and watching this. So we'll go ahead and move to the Zoom screen. Our guest is Robin Desjardins. Robin, thank you for joining us today.

Speaker 2:

Yeah, justin, so great to see you and thank you so much for having me. What a wonderful opportunity.

Speaker 1:

Yeah, you're welcome. Maybe you can get started just talking about what is Down syndrome and work that way.

Speaker 2:

Yeah, absolutely so. Down syndrome is a common genetic chromosomal disorder, and so there's approximately in the United States, about 5,000 babies per year that are born with Down syndrome, and so it occurs. That's about one in 775. And so Down syndrome, also known as trisomy 21, means that the individual has three copies of their 21st chromosome versus two, and so trisomy 21. And so what Down syndrome means, right? So that's kind of a technical term there. Down syndrome can cause both physical and cognitive learning delays in individuals. That's a common trait for them have increased risk for medical conditions such as congenital heart defects, hearing problems, high risk for childhood leukemia and other medical things. And one thing I have done recently, over the last year, is volunteering my time for an organization called Down Syndrome Achieves, and that organization is dedicated to improving the lives of individuals with Down syndrome through medical research that is specific for Down syndrome, which there is not many organizations that do that.

Speaker 2:

So that's a little bit about what Down syndrome is.

Speaker 1:

How does one learn that they or somebody they know or are related to that, that they have it? Is it like a blood test, or how would an individual or a family go about learning?

Speaker 2:

I guess about that yeah, yes, no, that's a great, um great one to share about. So I first learned about Down syndrome when I was in grade school. One of my neighbors they had a daughter that has Down syndrome and still in touch with that family, and so the mom had shared that when Hillary was born and she's a wonderful adult and I used to babysit her occasionally as a child, and then myself I have been blessed with a son with Down syndrome and so we didn't do any genetic testing when I was pregnant and that's an option in the modern time and, and so he was surprised and how we confirmed it was actually through a blood test, some of the nurses and doctors. There were certain features that are common, so that's lower muscle tone, kind of slanted little it's like features, smaller features with their eyes and just overall kind of smaller in general, and so that was kind of ticked off in our situation the nurses to say, hey, we think your son may have Down syndrome, but to confirm we would do a blood test.

Speaker 2:

And so that's how we learned about it too developmentally for him, I guess what can be done, or what are the tools or the resources that are available to him, and then you as caretakers, as mom and dad yeah, so there, thankfully, in this day and age, there's a lot more research or information out there than there was previously, and so that's great for awareness, for other individuals, just to know more about what Down syndrome is and how you can best support loved ones, family members, with Down syndrome.

Speaker 2:

And so for us, there's different communities in the Columbus area, which we're a part of as well, that you have families that you know can bounce things off of and say, hey, I've had this challenge or I have this question, and just get some of that peer-to-peer parent support. So there's a community out there. And then actually, when he was diagnosed, we did get a care kit from it's called the Saco Down Syndrome Association of Columbus, ohio, and so they sent us a packet as parents, new parents and it was all about Down syndrome, what resources medically out there or just in general to read and research about. So there's actually a wealth of information out there to help.

Speaker 2:

Like I mentioned, there's a lot of medical things to be on the lookout for so that you can be proactive.

Speaker 1:

And we started physical therapy with Maxwell when he was like an infant which sounds kind of silly, but because of the lower muscle tone it really helped him progress as a kid and getting into all the fun activities that kids get into, and so we found that really helpful to do the research and then be proactive and what we could to help him be successful yeah, yeah, and I just throw it out for our viewers and listeners that I mean, as we know, all of us, all humans, we all have things that are challenges that we may know, we may not know, and I you know, like for myself, and you know, like for for myself, and you know the major depression and generalized anxiety, adhd, ocd, the full realm, low spectrum autism. Uh, find out at a later age, age 37, that you know, as far as you know, as we we look at other other people as a human kind, as far as you know, as we look at other people as a human kind, as far as judging that I think we all should be a little kinder to everybody and whether it is something like the depression or, in this case, down syndrome, that we're all humans and we should all be loved and fostered as well regardless, fostered as well regardless. And that you know at the baseline that we all have things that we're going through, we've been through, and that's why I think it's very important to have Robin on our show to be able to share that. You know life goes on. There are resources, education, things out there for parents that you know, maybe in the past, maybe 30, 40, 50 years ago might not have been out there and you know, and some people might, you know, judge another person or judge a family.

Speaker 1:

But I think we've come a long way but we we can continue to again just foster and love and care for son and daughter no matter what, and that's, you know, a reason why I want to have Robin on, because that's exactly how her and her husband and to be able to talk about it.

Speaker 1:

I think it's hard because when we talk about this topic and others, it's very personal. We're talking about something very personal to a family and it's like, oh well, I don't want to go listen to this person talk because they're going to talk about this topic or that topic, but to be able to share and talk as you are. I just want to commend you on that and then, even like the social media posts of you know putting out there and when you were finishing up your time at Cardinal, there was a real nice story that was put together that I saw. So again, I just want to commend you in general of talking and being an advocate for your family, which I don't know who wouldn't want to be an advocate for their family and loved one.

Speaker 2:

Yeah, no thanks. Thank you, justin. And I would say, you know, as a parent with someone that gets a surprise diagnosis after birth, I think you hit on it. There's so much you internalize and you question why? Why our family? Right, because there's that worry that comes with a disability or any kind of medical condition, and so we did have those worries as parents and even, I would say, throughout so far his life. I can't believe it's that he's a teenager. He's a teenager. It's like wild.

Speaker 2:

I can't be that old, I can't be a parent of a teenager, like that doesn't feel right. But there have been times where you compare to other parents and you see them as typical kids and you're like, oh, I don't have that challenge or maybe I can't jump into that conversation because you know, maxwell has different needs and he develops a little bit differently, but he's still an awesome individual. And so I found you know, I've grown in my advocacy as he's grown up as well, just to make sure that, like, even if he's not doing similar things or the same things as other kids his age, like he's still doing amazing things and he is an awesome little guy that brings joy to everybody and he's funny and very smart and kind. So, yeah, it's definitely very personal and it has been a journey because you do feel certain ways of like am I, you know, do my fitting in with the, even as a parent, right, or is he fitting in? Are people going to treat your family in the way that you expect?

Speaker 1:

so what I said, what inside you made yourself want to be an advocate and to speak out, because that's a the decision that prior had to be made. This opportunity came about and I could have or I couldn't have, I did or I didn't. So for individuals out there that want to share their story, their families, medical challenges, whatever those may be, what helped you go from I mean you're still a parent, but from a parent just being a parent, to a son with Down syndrome to be a parent and an advocate for a son with Down syndrome.

Speaker 2:

Yeah, yes.

Speaker 2:

So I found that in having even one-on-one conversations with other people, like I mentioned just previously, a lot of my peers were having kids at the same time, and I didn't have any friends that had other you know children that had disabilities or you know Down syndrome moment of oh, wow, I would have never known.

Speaker 2:

Thank you so much for sharing. Or I actually have a son with ADHD or autism or you know other disabilities, and so it was a way to connect with people on a different level but then also give them a safe space to also share their stories, and so I really found that being a voice for my family and my son has opened the doors for others to also, you know, share their stories and through that right, and I'm sure, justin, and all the wonderful work that you're doing with Voices for Voices, that you found sharing your story has impacted other people to speak up as well, and so it's really empowering and it's really amazing to see that bravery in a lot of ways for people telling their stories, because that opens up other people's minds to say, oh, I didn't know that. Thank you for letting me know. Right, and when you have a personal connection, it goes a little bit deeper to. Okay, I better understand your story now.

Speaker 1:

So yeah, and have that emotional component too, where not only are you passionate about a topic, but it's near and near and dear to you. I I think it may help kind of the public speaking or, you know, being on the show and different things, because you we're not all experts in anything except ourselves and so you're an expert on you and your family that nobody can. I mean, other people can talk about Down syndrome, but nobody can talk about Maxwell Down syndrome like you and like your husband.

Speaker 2:

Yeah, absolutely. Everybody has a little bit of a different story and you know and I know you know this too, justin, in your own path is that everybody's path is different and so not everybody with Down syndrome is the same and they all have different experiences and they all have different strengths that they bring and qualities that they bring to the community and their schools or their workplace. And so it's really awesome when you get those connections. You have that similarity or commonality, but then you have these amazing strengths that make you unique, and so that's where those stories really come to life in that special, special, special experience.

Speaker 1:

that is all your own so do you get nervous, talking in general, like to like groups or uh, is it? I mean, I know, in the kind of the professional side and giving presentations, and that, has that helped you, as you've, you know, stepped out whether it's a story that's written or whether it's a video or a show. Do you find that that's helped?

Speaker 2:

Oh yeah, absolutely, I would say 100% it has helped. I did have a wonderful opportunity when I was at Cardinal with you. I think you had moved on to a different opportunity and so I had two in the organization. But then I was honored to be a part of their disability advocates network and so that really gave me some different, unique opportunities to have more opportunities to be in public situations where I'm speaking and advocating, sharing my story, and so that has absolutely built my confidence with that volunteerism in other ways into my professional career and I'd say personal you know personal life as well but yeah, it has definitely had a positive impact.

Speaker 1:

Wow, I'm at a loss for words a little bit because we kind of covered a lot of the content that I wanted to get to. What else can you share?

Speaker 2:

I know you have some notes. Am I at the top of your speakers?

Speaker 1:

Efficient.

Speaker 2:

Yeah.

Speaker 1:

It's so concise it was was like perfect. I know you have some notes and is there areas and things you want to make sure we cover. We've got probably about five or six minutes.

Speaker 2:

Yes, yeah, absolutely. Thanks, Justin. I guess the one piece I would probably close with as a message of being an advocate for others and you even hit on this- in your opening and so I love it and so what are ways other people can show up?

Speaker 2:

You don't necessarily have to always be an advocate and speak in different forums and you know, going to teacher student council or teacher conferences and all this stuff. You might not, you have a different situation, but there are things that anybody can do to be more inclusive and to foster an inclusive environment. And so I'd say you hit on it first was be kind. Right, anyone can be kind. You can make that choice to be kind, and I've learned by being kind. You give that opportunity, you're giving grace to someone on the other side. You don't know their story, right, and so it helps take some of that judgment out, maybe that you might have had in the past, if you're already feeling like, oh, something seems a little different. Like, be kind, open your perspective and show some understanding, and it's something anybody can do. Like, right there, we all hopefully know what being kind looks like. Secondly, I would say, really taking an opportunity to listen, and listen to understand, right, not just hearing, but like how am I taking time to really understand both what's being said, what are those nonverbal cues and how you're interacting, right, because you can pick on both of those of how somebody's feeling and that can help you kind of give that opportunity to someone else Right To pause and say, hey, I just want to make sure that you're still feeling comfortable. Pause and say, hey, I just want to make sure that you're still feeling comfortable. Or is there anything I can do to help you kind of move forward with whatever we're trying to accomplish? And so I think understanding that can help remove barriers.

Speaker 2:

With Down syndrome, maxwell is most successful when we understand where he has challenges and then we can remove those barriers so that he can be successful, because he can't, because he's great. So you just got to of, like, what's the best approach for this person? Um, and then, lastly, I love this forum and so it's. How do you educate yourself? Right, and so how do you take that opportunity to learn about something different and broaden your thinking? Because, right, when you learn something new and you're sharing your story, you're like, oh, I never knew that. Right, you're changing your perspective and then, hopefully, changing interactions, of how you're working and engaging with other people that you just learned from. So those would be the three things that people can do. It doesn't cost anything to show up and create a really good environment for others.

Speaker 1:

And something just came to mind when people have any type of challenge in their life, some people may judge it like, well, they can't do this, or they can't do this and they can't. But in reality, there are so many things that they can do, and so when you're talking about removing the barriers of those things that might not be able to do it, as well, there's still so many things that he can do. And I think that gets lost with any type of challenge. Like, oh, they're like this and these things, whether they meant for it to be in their mind or just they just assume they don't know, like, oh well, they're not going to be able to do certain things. But I think I know, like, oh well, they're not going to be able to do certain things.

Speaker 1:

But I think I know I've been surprised with just with people in general there's so many things that we're able to do that we might not know that there is a type of a challenge if we're not in one of those situations where it's it's a difficult thing, like they might be doing great, just like anybody. And I think that that's one thing we can. You can just touch on that when you look at things that he can do and things that might not be able to do as well that there's just so many things. The list is probably longer of the things that he can do and things that might not be able to do as well that there's just so many things. The list is probably longer of the things that he can do versus the things that might be a little bit tougher.

Speaker 2:

Yeah, spot on, justin, absolutely. It's taking that different perspective instead of having a bias right. Like oh all these people with Down syndrome. They can't do X, y, z Well hold on let's not be so judgy and really changing that perspective, because sentiment I wouldn't add anything. You left me speechless this time with that Great, great yeah great.

Speaker 1:

Well, in closing, is there maybe and I know you touched on that kind of at the outset, maybe just want to retouch on some maybe resources that individuals can learn more about Down syndrome and if they have questions, like reach out to your primary care doctor or just how that goes?

Speaker 2:

Yeah, yes, absolutely so. If you are interested to learn more and maybe you don't have a family member or loved one, there's definitely many resources online. Like I mentioned, a couple that I personally have been involved with would be Down Syndrome Achieves, and that's I think it's that word. There's also Down Syndrome Association of Columbus, ohio, and then there's other books about Down Syndrome. You can go to a local library or, you know, online Kindle or whatever the coolest thing is I'm not that cool so, whatever those forms are, you can search and find out more there or a loved one absolutely, your doctor should be able to also direct you to other local resources in your area.

Speaker 2:

And then, like I said, if you happen to engage with somebody with Down syndrome, just have that open mindset, be kind. I'm sure you know they'll teach you something. I know Maxwell has taught me way more than he probably, than I probably could ever teach him. So, um, yeah, no, thank you so much, justin, for having me. It's been a pleasure to connect with you and talk about Down syndrome and a little bit about my family yeah, no, absolutely.

Speaker 1:

I'm glad we're able to get a good time and day to do this, because it's a great message and the advocacy is huge and when we have a platform to be able to share that, it was kind of top of mind of trying to be able to get ahold of you and just the way life is, it's just hectic. So thank you for joining us on this episode, thank you for talking about Down syndrome, thank you for talking about your family and being so transparent and the advocacy. I learned a ton too just in this conversation. If you can hang on just for a minute after we're done, get a couple photos and then we'll be good. And we want to thank you, our viewers, our listeners, who tuned in today for this episode of the Voices for Voices TV show and podcast.

Speaker 1:

Robin Desjardins was our guest. The topic is Down Syndrome Talk about, you know, from family to advocacy. It was just amazing to just talk and have a conversation about an area that doesn't get I'll say doesn't get a lot of press and if it does, sometimes it's not the best type of press. So we wanted to give it its positiveness and kindness and that we all can just be kind to other human beings. So until next time, I justin allen hayes, founder executive director of voices for voices, and please be a voice for you or somebody in need.

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