Title:
Eunie’s Buddies is Empowering Parents and Caregivers of Down Syndrome Children
Subtitle:
Cecilia Elizalde Shares the Transformative Ripples Created by Best Buddies Family Support Program
Transcript:
Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths.
Let’s go.
Welcome back to Pushing Forward with Alycia. I’m Alycia. Today’s guest is a powerhouse mama filled with heart, love, passion, and so much greatness. Her name is Cecilia Elizalde. She’s a powerful advocate who has turned her love into action. She was a successful TV producer and host for a national music show in the US.
Her world changed when her daughter, Valentina, was born with Down Syndrome. Cecilia stepped into a new purpose amplifying inclusion, launching global campaigns like Down 360, a YouTube channel, and mentoring families through early diagnosis. She is now a senior director of Eunie’s Buddies at Best Buddies International, and she’s helping parents feel seen and supported.
And speaking of Best Buddies, small plug, Anthony Kennedy Shriver was just on the show as well, who’s the founder of Best Buddies. So check that out if you haven’t. Cecilia, welcome to our show. I am so excited to meet you when I was going through just all of your amazing work and advocacy that you’ve done as a mama and as a corporate professional.
You’re an inspiration for all of us boss babes, trying to make the hustle happen. Welcome to the show.
Cecilia Elizalde: Thank you, Alycia. Thank you for having me. I’m so excited to be here. I also admire very much what you do.
Alycia Anderson: Oh, thank you. It’s been a joy to get to know some of your team. You really have an amazing team working at Best Buddies with all of your programming, so just congratulations on making such an impact in so many kind of sectors of disability inclusion. If it’s okay, I would love to take us back to the day that your baby girl Valentina was born, and what emotions rose to the surface, and how has all of this changed the trajectory of your life?
Cecilia Elizalde: Of course. So it was one of the biggest life changing moments for me, and I would say for most parents who receive a diagnosis for intellectual or developmental disability for their children. All my pregnancy was as expected and I found out at birth. And so initially, somebody pulled my husband aside because I needed to have an emergency C-section, they put me to sleep. And then when I woke up, it was a completely new reality. And in the meantime, somebody pulled my husband aside and said, “There’s a 99% chance that your daughter has Down syndrome, but we have to check with testing and I’ll let you know, and I have to go ’cause I have another patient.” And just drop that bomb on him and left him there like on a hallway. And so he didn’t want me to receive the news the same way because really the moment you receive the news is what shapes that next chapter of your life. And so how the medical providers tell you those news have a lot to do with your perspective and with how you process everything else. He waited for my OBGYN to come in.
He wouldn’t let anybody in, unless it was him to be able to deliver these news. He was also struggling a little bit. Once I woke up, he came, we slept a whole night. My husband knowing this information and he didn’t wanna tell me ’cause he didn’t know how to tell me and he wanted the OBGYN to tell me.
I could see something was going on, but he was just protecting me in a way. And so the next morning, he came in and he talked a lot about Trisomy 21, and I had no idea what he was saying. I didn’t know what that term meant. And so when I asked him, what does that entail?
He said, “Do you know what Down Syndrome is?” And that’s when my world opened in half, and I felt like I was falling to the bottom of the ocean trying to even hear back what he was saying. It was just such a state of shock and it was much like me drowning in the ocean. My tears started to come out, and all I could say at that moment was, “But what about all the tests that came as expected?” He just said, “Sometimes life has bigger plans for us.”
Alycia Anderson: Oh
Cecilia Elizalde: And that’s how our journey started.
Alycia Anderson: Wow. I can imagine how much of a shock that is, receiving the diagnosis at birth. Is there something that you can share with us quickly, like advice that you could give to parents when they receive something like that, that they’re not expecting? That is an incredible story.
You go night, you wake up, you spend a whole night with your husband, he’s protecting you. Everybody’s in shock.
They don’t know how to use the right words, don’t know how to approach the conversation. What do you do? How do you feel? What’s the advice you can give right there?
Cecilia Elizalde: I think there are two pieces of advice. One, for the parents like you asked, and then for medical providers who have to deliver these diagnoses, which can be very challenging for them too. I put myself in their shoes as well and must not be easy. But it’s interesting that we’re having this conversation today because just last week, I met with a doctor that delivered Valentina because we’re now doing outreach efforts for them to be able to share the information and the work that we do at Eunie’s Buddies. But it was full circle for me. And one of the things he told me was like, “But how should I say it? Because I say, I come in and I say there’s been an issue.” And I was like, “No, don’t come in. There’s been an issue or there’s been a problem, or they’re suffering. You’re already with your language establishing certain connotations and feelings and information that’s just so important at that exact moment because our story starts with your words.” And so I guided him a little bit on how to deliver the diagnosis. Perhaps just coming in neutral, there’s been a change of plans or we’re gonna pivot a little. We have more information now, and let them decide what that means to that family specifically.
Even before you go, I really want to repeat what you just said ’cause it was so profound and so important. “Our story starts with your words,” and I don’t think that doctors and medical professionals understand that depth of I will lead, you follow. And that is such a profound statement, and I think it is so true in so many diagnosises of disability, congenital disabilities.
Alycia Anderson: The same thing was with me when I was born. “She’s not gonna make it, don’t give her the surgery she needs. She’s gonna have no quality of life.” And their words lead our stories, and that is such an important moment that you just had right here on the show. Wow.
Cecilia Elizalde: Absolutely. And then, we can always, as parents, then decide what we take from what we’ve heard. But it makes it so much harder if that was how it started, it’s like a negative delivery in a way.
Alycia Anderson: And the reality of that too, I’m so sorry. I just love this topic. If you’re Mama Cecilia, and you haven’t had any experience with Down syndrome, and you receive this diagnosis, you know nothing more than to follow an expert’s words, guidance, lead, especially in those moments of vulnerability and fear.
So that’s incredible.
Cecilia Elizalde: Absolutely.
We’ll dive into why Eunie’s Buddies is so essential too, coming into this moment.
Alycia Anderson: I love it.
Cecilia Elizalde: The main thing is to let yourself process everything that you’re feeling at that moment, and that could be very different for everybody that goes through this experience and the time that it takes to process it or the thoughts that come to your mind.
They’re all normal. We all experience those, and so it’s important to process those. And then if you’re really struggling with them, you wanna seek out help. But, especially, it’s so important to surround yourself with community. That could be your family or what we do at Eunie’s Buddies, we build community, we connect you with somebody who’s received a diagnosis much like you, so that they can just listen without judgment.
And really nobody’s gonna understand it like somebody who’s lived it, because you may have many close friends or your best friend. But unless they’ve gone through it, they’re probably not gonna have that same depth and true understanding than somebody who’s been in your shoes.
Alycia Anderson: Totally. Community is a big deal for all of us, whether you have a disability or not. So I think that’s some beautiful advice. So you received this diagnosis, you’re in the hospital, you’re leading this career as a producer, you’re doing incredible things on TV. And then you start to pivot because your life has a different purpose.
Can we talk about how you go from that to the advocacy work that you’re doing today? And then I definitely wanna dive into what Eunie’s Buddies is, and all of the those things as well.
Cecilia Elizalde: Yeah. It was just everything changed.
Alycia Anderson:
Cecilia Elizalde: When Valentina was born, because I came from media and production and entertainment in general, that’s where my eye was. And so I started noticing the lack of visibility and representation for individuals with IDD in these markets. And so I was like, “I think I can do something with what I have with my talents or my connections or whatever that may be.” And so I started creating campaigns. I think it was the first campaign that I did, was pair Valentina with a major fashion designer in Europe, and we made history.
She became the first person with Down syndrome to model for a major fashion designer. And she premiered in Fashion Week, and she was on the cover of People Magazine and Times Square. Visibility for me was really important because I think, often people, what they see in the media, or on TV, or just in general in advertising, whatever it might be, they absorb as the norm.
And the more we see individuals with IDD out there, it’ll be a lot more accepted. It’ll feel a lot more natural. Because I didn’t grow up seeing many individuals with IDD. Valentina was, in fact, the first person with, I would say, with an intellectual or developmental disability that I had ever met. And so it was such a shock for me on so many levels, that I wanted to contribute in a way. And because that campaign became successful, it went viral, it contributed towards the inclusive advertising that we’re now seeing little by little. It just inspired me to keep going and working with different organizations nationally and internationally and, my life pivoted from there.
Alycia Anderson: Yeah, if we see it, we believe it. And if we don’t, it’s to your point, it’s not part of, I’m air quoting normal societal culture. And what powerful campaigns, like People Magazine, she is hitting the runway, making history. That’s really beautiful.
And that’s the power of storytelling, like non-verbally, really just putting it out there. And allowing general society to absorb content authentically, which is the power of representation and what you’re doing. So incredible. Yes.
Cecilia Elizalde: Thank you.
Alycia Anderson: Can we talk a little bit please about Eunie’s Buddies, and the inception of it. I would love for you to give a little bit of history. Just of Eunice Shriver and just for those who might not know. Can you give us a historical kind of overview of, frankly, the groundbreaking work that Eunice Shriver and Best Buddies are doing for the global movement of disability inclusion, representation, independence? Just the whole thing is so beautiful. That’s a big ask, but I would love for you to educate us please.
Cecilia Elizalde: Oh my God, it’s such an honor to work at Best Buddies because as a parent of a child with Down Syndrome, I’ve been personally impacted by the work of the Kennedy family. Be it from Eunice Kennedy Shriver, who was the founder of the Special Olympics. She collaborated closely with President Kennedy to ensure we have access to certain laws and so many great things that came for our population, and to now be leading a program in her honor.
It’s just such a huge honor for me. And I take it with a lot of responsibility and humility, and it’s truly exciting. And then her son Anthony Kennedy Shriver founded Best Buddies, and Best Buddies has been around for over 35 years. Just fighting for inclusion and making sure that individuals with IDD are included in schools and have that social component and are able to interact with other people.
And then as well as job sites and leadership and now inclusive living. Andwe’re here for the long run. And with Eunie’s Buddies, the latest program, it’s exciting because we are here to meet the families from the very beginning and be able to be there throughout the different life stages.
They’re not just here and then dropped, but we’re here to support them and to build that community and whatever they may be facing, we’re here for them. And that’s the whole idea of just supporting and helping each other out.
Alycia Anderson: When Anthony was on the show, he was talking about Eunie’s Buddies and how it’s recently been launched. Can you give us some examples of some of the services and some of the support that you offer your partners?
Cecilia Elizalde: Yeah, so Anthony has been wanting to launch Eunie’s Buddies for a while, and it’s just so wonderful that it’s now here and it’s first year. What we do at the core of our program is mentorship. So we pair somebody who’s just received an IDD diagnosis for their child with somebody who’s already walked down this path.
And so that’s their mentor. And that could be moms, that’s caregivers, somebody who’s really either struggling or trying to understand what this all may mean. And so going back to our conversation with the moment of the diagnosis, there could be prenatal pre-decision cases where they’re trying tohear the information that the medical provider gives them, but then it might be useful to know what the day-to-day might look like and then you decide from there.
We provide information and just here to support and build community. And so with that, we pair them with a mentor so that they can walk throughout the different stages. We’re very big on just meeting them where they’re at and doing it step by step, ’cause it all can feel very overwhelming at the beginning. But just go one step at a time and don’t try to jump. And I know that’s super natural into what’s gonna happen when I’m gone or what’s gonna happen with jobs. All these questions are just flooding your mind when you’re trying to understand what you just learned. And you’ll get there with the support of somebody who’s been there. You can ask all these questions and they’ll be able to answer them step by step. Another big component for us is self-care ’cause we wanna make sure that the caregivers and the parents are okay to be able to give, because yes, there are additional challenges. There may be additional challenges, but we wanna make sure that they have their cups full, and they’re not running on empty. So we have different initiatives to ensure that their wellbeing is taken care of and we prioritize them very much.
‘Cause often parents and caregivers take the backseat and start giving to everyone in the family. But they need to be okay in order to do this successfully and enjoy this journey as well. And the third component for us is tailored resources. So whenever a parent or caregiver has any questions, we don’t just send them a bunch of links or send them to a website.
Our mentors really listen to what they need and they’ll be like, “based on what you just shared, I think you should check out this program or this organization.” ‘Cause we partner with a lot of organizations to lift all of us up and ensure that they are getting exactly what they need. And the idea is that we do that through Best Buddies. Like I said, we’re able to do that throughout their lifetime. So it’s pretty exciting and it’s, so rewarding to be able to welcome families and walk together with them ’cause it’s not really us just serving them. It’s like all of us are one big family.
Alycia Anderson: And I love that you do caregiver support as well. That’s incredible. Can that be individualized support?
Cecilia Elizalde: Yes, it’s all one-on-one mentorship. We do have additional, what we call specialized mentors in cases there are, for example, a double diagnosis. So say your child has Down syndrome, later on you learn that your child has autism. And so we have a floating mentor type of thing where that person connects with you.
When you can ask any questions specifically about this new diagnosis. You don’t need to be paired with that one either. And the whole idea with the pairings is just like any friendship, you’ll communicate via text or social media. It’s just a connection that we’re making with somebody that’s gonna help you navigate this.
And the way we make those connections too is very intentional. So when they sign up, they’ll answer a few questions that will allow us to connect them with the right person based on similar diagnosis, language, interests. So the idea is that friendship continues for a long time.
Alycia Anderson: I love that. I have found with my own disability that power of connection and community has, not only help the collective, but for me personally, I’ve become stronger and stronger in the belief of my own self and abilities and all of that. So this has to be a very powerful program.
Wow. Congratulations.
Cecilia Elizalde: Thank you. Yeah, it can definitely be transformative, especially at such a key moment in your life, to be able to connect with someone and reallyalready on a deeper level because it’s something strong that you’ve both experienced. And it’s been beautiful because we see mentees that later wanna become mentors as well. We see families that have connected virtually ’cause we have this program in-person in certain locations, and then virtually nationwide in the United States. And the ones that have connected virtually have already traveled to meet each other and it hasn’t even been that long since they’ve met.
But it’s just such a beautiful bond that is created that I think speaks to the power of the program.
Alycia Anderson: Beautiful. Do you have one specific success story that you can share with us about? You used the word transformational. Is there one that pops into your mind that is like a nice bright example of the results of the work you’re doing?
Cecilia Elizalde: Yeah, we have a few. We’re so excited. But one comes to mind where this mom had a hard time. She learned about her son’s Down syndrome diagnosis during pregnancy. And so she reached out, but wasn’t ready. We meet them at their own pace. So if she’s ready to reach out, we’ll continue to respond and so on. So for a few months she was just checking in from time to time, but didn’t wanna talk much about it. Then the baby was born. And then little by little, she started reaching out more until she was ready to be paired. And so we paired her with a wonderful mentor, and she’s been thriving so beautifully to the point where she’s now almost like a spokeswoman for us.
And she did. I remember it was a very special moment for all of us at Eunie’s Buddies when she did an interview with Anthony, and Anthony was holding her baby and I said, “You’ve dreamt of this for so long and now you’re holding a baby.” And for her, she was there and the next day she posted and bragged about her son on social media, which is a huge step for us all because you’re officially like presenting him to the world. And you never know what kind of comments you’re gonna get or there’s so many things that go through your head when you do that first post.
And I remember mine too.
Alycia Anderson: Oh wow.
Cecilia Elizalde: But it was just so special to see how proud and ready she is and how she’s come a long way with us just being there for her and guiding her in any way she needs us. And it’s been so beautiful to see how she’s now so empowered and ready to take on the world.
And her son is doing amazing and is such a beautiful boy.
Alycia Anderson: That’s an incredible story and I love that coming out party and just being free. I have found that the more we embrace our disability or the one that is in our lives with it, we find freedoms in our own space to really fly. So that’s beautiful. Thank you for sharing that.
Cecilia Elizalde: It’s a part of acceptance and thenthe celebration of that journey you’re on now.
Alycia Anderson: And the acknowledgement of it doesn’t come overnight to just be like, “Yes, I’m disabled.” It could be a very long process to get to the point of having a really solid acceptance of what it is. So I think that is such a beautiful story, and I love that coming out party on social media.
I’ve never thought about that before, but I’m sure that’s a moment.
Cecilia Elizalde: Oh, it is for sure.
I think there are certain moments that we don’t ever forget, like the day of the diagnosis or the day you posted something or a graduation, and things that are just so impactful and will always stay in your mind. I remember like even a family member of hers came and she’s, ” Oh my God, I can’t believe like this has been, it’s such a difference now,” and it’s just so beautiful to see that transformation.
Alycia Anderson: Ugh. I love it. It’s those transformations that keeps you coming back for more. It’s such a beautiful experience, and that’s incredible that’s your everyday life, that you are gifting these experiences to so many people, I’m sure. And this is just the beginning. Congratulations on the impact of your life and your daughter’s life. Wow, really beautiful. How do we get involved with Eunie’s Buddies and how do we support you? Please let our community know how to really get involved and get engaged.
Cecilia Elizalde: So we have different options for you. You can go to our landing page or website, bestbuddies.org/familysupport, or if you’d rather start via social media, you can just look us up under Eunie’s Buddies, we’re on Instagram, Facebook, TikTok, and YouTube. And from there you’ll learn all the information.
You’ll see if you wanna start right away or if you wanna come to our local socials first, then see how you feel. And then little by little, you start becoming part of the Eunie’s Buddies family. We also have a cell phone that’s posted on the landing page, so that people can text if they feel more comfortable to.
We try to make it as accessible as possible, ’cause we know sometimes it can be hard to reach out for help.
So just start with any way that’s most comfortable for you.
Alycia Anderson: Beautiful. Did we miss any golden nuggets that we need to make sure that we are saying today? We’re gonna include all of your information and links in our show notes. But
did we miss anything from Eunie’s Buddies that we need to make sure that we note?
Cecilia Elizalde: No, I think you’ve covered everything. Amazing.
Alycia Anderson: Okay, you did the covering. I just did the asking. Thank you for doing the hard part. Okay, so I have two more questions. First, if you could whisper something in every parent’s ear that is receiving the IDD diagnosis today, what would you want them to know?
Cecilia Elizalde: Ooh. Probably that your life might look different than expected in the most beautiful ways. I don’t think I could have grasped how my life would change and the type of person I would become at that time. And it is because my daughter came to us thatI’ve been able to make an impact. And I consider myself a better version of myself because of all the experiences that she’s brought to our family and everybody around it really. It’s amazing with people with intellectual and developmental disabilities, it’s like a drop of water that just ripples, and everybody benefits from their presence.
Alycia Anderson: Ugh. I love that visual. So true and so beautiful. And that ripple is just like this flowing, beautiful, natural flow of life.
Cecilia Elizalde: It is, and I love it that it’s from their authenticity.
Alycia Anderson: We have so much to learn from them, and it’s just such a privilege to be able to learn from people with disabilities.
You are such a beautiful person. I am so happy that we got to meet each other today, honestly.
Cecilia Elizalde: Same here.
Alycia Anderson: Thank you for all of the work that you’re doing. Okay. I warned you about the pushing forward moment. Are we ready for it?
Cecilia Elizalde: We are.
Alycia Anderson: Okay. Do you have a pushing forward moment that we could leave our community with to inspire them on their way off into their day today?
Cecilia Elizalde: I love that you call it pushing forward because instead of getting stuck, say on the diagnosis, you’ll see beyond that. And so I would encourage everyone to focus on the possibilities, and reach out for community, connect with somebody. Because really this journey feels lighter that way. And you discover all the joy that is in it when you do it with someone else.
Alycia Anderson: I love that. That’s so beautiful. Thank you so much, Cecilia, for your time today, and for the serious impact that you’re gonna be making and you are making on our world. I am really grateful from that genuine place straight to you. Thank you so much for dedicating your life to this. It’s amazing.
Cecilia Elizalde: Thank you, Alycia. I really appreciate the time.
Alycia Anderson: Yeah, and thank you to our community for tuning in today. Remember, share, subscribe to the show. You’re helping our movement grow and we are greatly indebted to you for that. We will see you next week. This has been Pushing Forward with Alycia, and that is literally how Cecilia and I roll. We will see you next time.