March 21 is World Down Syndrome Day, where families, friends and communities across the globe come together to spread awareness and increase support for Down syndrome. Washington Parent magazine recently sat down with Liz Plachta, co-founder and executive director of Ruby’s Rainbow, a 501(c)(3) nonprofit committed to empowering young adults with Down syndrome to achieve their dreams of higher education.
“After giving birth to Ruby, do you remember how it felt to realize you were now a parent of a child with Down syndrome?”
Liz Plachta: “Before Ruby was born, I didn’t know anybody with Down syndrome or anything about Down syndrome. She was in the NICU for about three weeks or so, and so in the beginning, it was more about, “Is she going to be okay?” Down syndrome was such a small part of it. My husband was a special education teacher at that time, and so when the doctor came to tell us they thought Ruby had Down syndrome, my husband said, “We got this. Kids with Down syndrome are my favorite students!” (Laughs).
I had then gone home and read all the books, because, as a new mom to any child, especially one with special needs, you want to know everything about your kid. But everything I read was so outdated, and there really wasn’t that much about adults with Down syndrome. I was super curious as to what her future would look like, what possibilities there would be for her. I wanted to be able to look forward. A lot of people ask: “Why did you do this? Scholarships? College scholarships? While your daughter was so young?” And I always say I kinda selfishly did it because I wanted to see for myself what people with Down syndrome are doing. Are they living independently? Are they getting jobs that they love? Are they in the community, feeling supported and loved? Are they making a difference? That they matter? Do they have friends?
When Ruby was born, the second I held her, I knew she was going to change the world.
And I knew that I had to do something to help show the world how amazing and capable she was. That’s how Ruby’s Rainbow started. It was just my desire for the world to see what I saw in her and, ultimately, in all people with Down syndrome. In the beginning, I was hungry for that information and wanted to see these lives, these faces, of people in the community with Down syndrome just doing it.”
“Did you have any preconceived notions about Down syndrome that changed after Ruby was born?”
Liz Plachta: “You know, I didn’t really, and I think that was a blessing. I had read all the books, right? But looking down, at this perfect little human next to me … She was such a hard worker. Has been a hard worker since she came out of the womb. She is determined, she is smart, and so nothing that I was reading was matching what I was seeing in my child. I just felt like so much of the information was outdated and so I pushed all of that away and decided to focus on her abilities and her needs and let her show me and guide me through this journey. That’s probably one of the most beautiful things that, I feel, a new parent of a kid with special needs can do.”
“What would you say to a parent who’s just learned their child has Down syndrome?”
Liz Plachta: “I think it’s magical! When a new parent reaches out and says, “I just got a diagnosis” or “My sister just got a diagnosis, we don’t know what to do.” I’m just like, “Congratulations!”
It makes me excited for them. With my whole heart, I am 100% excited and celebrating with them, because I see what Ruby has brought into this world and into our lives. Any kid is going to change your life, right? But there is something unique about the way people with Down syndrome perceive themselves. They have this confidence that gives you your own confidence, to be yourself and to see the world in a way most people don’t get the opportunity to see.
So, yeah, I say, “Congratulations! Welcome to the club! It’s the coolest club ever.”
“World Down Syndrome Day is March 21. How do you and the Ruby’s Rainbow team promote awareness for the Down syndrome community?”
Liz Plachta: “We promote awareness by showing the world just how amazing and capable they are. We share our recipients’ accomplishments and life experiences, while also sharing about Ruby and her growth and overall awesomeness. On WDSD – and the two weeks leading up to it – we have our “3/21 Pledge Campaign,” where we share lots of videos and other impactful content to help shift the Down syndrome narrative and show the world that people rockin’ that extra chromosome are worthy, amazing, determined and capable humans that deserve it all!
We ask that people who want to support Ruby’s Rainbow donate just $21, but also that they share with three people to help spread the word that people with Down syndrome are going to college and rockin’ life!”
“What’s something about Down syndrome that you feel most people outside of the community misunderstand about it?”
Liz Plachta: “I think a lot of people can misunderstand the potential that people with Down syndrome have. When Ruby was born, even I didn’t know that people with Down syndrome were going to college. My husband and I looked at each other and thought, “A little forever-buddy! We’re going to have this cool little human with us forever!” And we both quickly realized, she is not going to want to stay with us! (laughs). She is her own human; very determined, very smart and independent.
People with Down syndrome have the same dreams and passions as anyone else. They have their own thoughts and desires. Some people don’t realize that they are individuals. Ruby has … a lot of strong opinions, about a lot of things, as anyone should (laughs).
She deserves to be heard, be understood and have the same opportunities as her big sister.
Even if Ruby doesn’t want to go to college, that’s fine. I just want her to know that there are opportunities available and that she is worthy and capable and whatever she wants to do.”
“How did you decide to make Ruby’s Rainbow a college scholarship fund?”
Liz Plachta: “When Ruby was born, there wasn’t a lot of social media, or information, or real-time faces of people with Down syndrome who were older, out there living their lives and doing their thing. I craved that. I needed to know that being an adult with Down syndrome was going to be okay. And, again, I wasn’t even sure that people with Down syndrome were going to college, but when Ruby was 6 months old, I literally looked at my husband and said, “I think I’m going to help somebody with Down syndrome go to college.” I told him that we’re going to find that one person and help them go for their dreams.
That first year, I wanted to give out one $2,000 scholarship and we were able to give out 11 $2,000 scholarships. I then thought, “Okay! So this is a thing! This is happening!!!” People were believing in what we’re doing and investing in the futures of people like my daughter, so we’re just going to roll with it. That first year we gave out $22,000 in scholarships; this year we gave out $367,000 in scholarships. Isn’t that nuts? (laughter). To 92 people who are rockin’ it just like Ruby — going out there, chasing their dreams, living their lives.
That’s what I wanted the world to know. That they are just like you and me. They have all of these dreams that they are worthy and deserving of chasing. So that’s what we’re here to do; we’re here to help them.”
“How does Ruby’s Rainbow decide who to award scholarships to?”
Liz Plachta: “It’s so hard … so hard. If it were up to me – you can ask all my board members – I would give every penny (laughs) that we have away.
We have a scholarship committee where we thoughtfully review each application. We all believe that each person is worthy of this experience and of a scholarship, but unfortunately, we can’t give it to everybody. In meetings, I’ve said, “I’ll take a pay cut!” (laughter).
It’s a very emotional meeting, because we all come in with just our whole hearts and wanting so much for each person to succeed. It’s the hardest and there are always tears because I look at each applicant and each has a piece of my own daughter in them, right? So, I can’t imagine anybody, one day, turning away my own daughter, so, I look at it that way. [I always say], “I’m here. You can email me. I can help you with your next application.”
“What should prospective students know before applying?”
Liz Plachta: “I would absolutely say be sure to watch the videos on the website: rubysrainbow.org. Check out the rubric. If they have any questions, I am here to help. We really just want to get to know them, right? We want to hear their accomplishments and their goals, all of these things as well, but we just really want to get to know them as a person, as a human, and find out how they want to achieve their dreams and goals and how the college experience is going to help them achieve these dreams.”
“About how much in scholarships has Ruby’s Rainbow awarded?”
Liz Plachta: “We’ve given out over $1.5 million — just a little over — in 10 years … I have to pinch myself when I say it, because that is just nuts! I didn’t know what I was doing when I started this. I just had the dream and the passion in my heart. I did not know what I was doing, or how to start or run a nonprofit. I did it for the first four years [as a] full-time volunteer, in conjunction with my full-time job, and raising my two kids. I wanted so badly to make an impact and show the world just how amazing and capable people with Down syndrome are. I truly believe that. That desire, and looking at my daughter every day and going, “Oh, my God, the world needs this magic.” That’s propelled this whole organization.
Our biggest event [each year] is the “3/21 Pledge” for World Down Syndrome Day. [Last year] we raised more than $450,000 in two weeks. But the average donation was like fifty bucks … it’s all of these people coming together.
And we run on every little bit, every little bit matters to us. Even if you can’t donate.
The sharing and the showing the world — because that’s another huge part of what our organization does, is raising awareness and showing people how amazing and capable people with Down syndrome are. We want you to raise your expectations.”
“In your opinion, what’s the best thing a community can do to increase awareness and support individuals and families living with Down syndrome?”
Liz Plachta: “Include them. In everything. You won’t be sorry [if you reach out and have] a person, and a family, with Down syndrome in your life. You think that it might be benefiting them, but it’s really not. It’s benefiting you. I would say give them an opportunity, show them love, treat them like you would treat anybody. People with Down syndrome want to be involved with communities and feel loved and like they matter, and respected and contributing to their communities.
Anything you can do to help – or provide opportunity – or just … you know, go out to lunch! Or whatever! They are just like you and I. They crave human connection and being seen and feeling valued.”