Thursday, February 29, 2024

Episode #57: Beyond the Diagnosis: The Realities and Myths of Down Syndrome

Resources and Support for Families of Children with Down Syndrome

Resources and Support for Families of Children with Down Syndrome
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Show Notes:

What if you were told that Down syndrome is not something to fear, but rather something to celebrate? In this inspiring episode of the Water Prairie Chronicles podcast, host Tonya Wollum welcomes Jennifer Varanini Sanchez and her daughter Sofia Sanchez, who reminds the world that Down syndrome is not scary.

Jennifer and her husband have three sons, the youngest of whom also has Down syndrome. The family adopted Sofia when she was under two years old from an orphanage in Ukraine. Jennifer has since become a Down syndrome and adoption advocate. In this episode, Jennifer shares their experiences with early intervention services, individualized education programs, and inclusive education. Jennifer also provides recommendations for new parents of children with Down syndrome and shares valuable resources for families.

Tune in to learn how Sofia is breaking down stereotypes and thriving as an eighth grader who attends school, plays sports, and is involved in a community theater production. Get ready to be inspired and uplifted by this heartwarming interview!

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Meet Today’s Guests:

Jennifer Varanini Sanchez is the mother of 4 busy teenage children, two of whom have Down syndrome. She’s a makeup lover and a Down syndrome and adoption advocate.

Sofia Sanchez is a 14-year-old actress, model, and Down syndrome advocate of Ukrainian-American descent. She made her acting debut in the television series, Switched at Birth, and has since appeared in a variety of productions, including the films For Paloma and The Ballad of Songbirds and Snakes. She has also been featured in print ads and commercials for prominent brands like Old Navy and Target. Sofia’s inspiring adoption story has been the subject of several Scholastic picture books, including You Are Enough and You Are Loved.

Episode #57: Beyond the Diagnosis:

The Realities and Myths of Down Syndrome

Resources and Support for Families of Children with Down Syndrome

(Recorded March 27, 2023)

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: What if you were told that Down syndrome is not something to fear, but rather something to celebrate? In this inspiring episode of the Water Prairie Chronicles podcast, we welcome Jennifer Varanini Sanchez and her daughter Sofia Sanchez, who reminds the world that Down syndrome is not scary.

This is part 1 of an interview where Jennifer and Sofia share their experiences with early intervention services, individualized education programs, and inclusive education. Jennifer also provides recommendations for new parents of children with Down syndrome and shares valuable resources for families. In the next episode, they will discuss how Sofia is breaking down stereotypes as an actress who will appear in the new Hunger Games movie coming out this Fall and has other exciting projects. Get ready to be inspired and uplifted by this heartwarming interview!

Tonya: I have two very special guests with me that I have been looking forward to meeting myself and introducing you to for quite a while. We have Jennifer Varanini Sanchez. She’s the wife of Hector Sanchez. She’s the mother of four teenagers, I believe.

Do you have anyone older than teen at this point?

Jennifer: Nope, Nope.

Tonya: So four teenagers.

Jennifer: Four teenagers.

Tonya: She’s a makeup lover and, um, she’s a Down syndrome and adoption advocate. And the last part of her description is why I wanted to talk to her so much.

With her today we have her daughter Sofia Sanchez. Sofia is a Ukrainian American actress, a model, voiceover artist, an influencer who is reminding the world that Down syndrome’s not scary. And Sofia has done an awful lot in just a short time of her life. And I’m very excited to, to introduce you to both of them.

Jennifer and Sofia, welcome to Water Prairie.

Jennifer: Thank you. Thank you. Thank you so much for having us.

Sofia: Yes, thank you.

Tonya: Is there anything you’d like to share about yourselves before we get into our interview?

Jennifer: You wanna say or do you want me to start? Oh, well, she covered me pretty well. You wanna tell who you are?

Sofia: Okay. I’m Sofia Sanchez. Daughter to her. I was born in Ukraine and when I came here to this American family, I was given to my mom and she adopted me from Ukraine. And I was like so honored to be in this family, in this new house and my new life is finally here.

Jennifer: Your new life is finally here. So what she’s talking about is, yes, we adopted Sofia when she was just under two years old from an orphanage in Ukraine, and she completed our family. So I have three, um, biological boys and we just didn’t feel like our family was complete until we added this sweet girl to it. And um, yeah, it’s been a wild, fun ride.

Tonya: Excellent. Excellent. Well, if you, um, have been watching the, the podcast or listening to it, then our listeners will know that we’ve been playing a game this season called Two Truths and a Lie, and I’ve asked Jennifer and Sofia to prepare some facts about themselves to share with you.

And, um, so I’m gonna start with Jennifer, if you will, share three facts about yourself with one of them not being true. Then we’re going to let our listeners go onto social media and see if they can guess which one is tr, which of the two are true and which one is the lie. So what would you like to share about yourself?

Jennifer: Um, let’s see. I was a cheerleader in high school. Um, I have been on a game show and I have, um, let’s see. I’ve flown on a helicopter with a famous person.

Tonya: Wow. Hmm. All right. I’m gonna have to think about those a little bit. So, Sofia, would you like to No, we, we, we aren’t gonna tell yet what the answer is on these.

So, Sofia, would you like to share three things about yourself? One of them not being true, but the other being true? The other two. So something

Jennifer: (To Sofia, “One has to be a lie. This is a little confusing, but you say two things that are true about you, and one that’s a lie, but pretend like it’s true.”)

Sofia: So I think the TV shows, and

Jennifer: That’s one fact you’ve been on a TV show. What’s another fact?

Sofia: Okay. I was doing a movie.

Jennifer: She’s been on a movie and, and then

Sofia: I’ve gone to 13 countries.

Tonya: She’s visited 13 countries. Okay. All right. So, so we have, you’ve been on a TV show. You’ve been on a movie, and you’ve been to 13 countries. All right, so if you’re listening, it’s your turn to go guess now, but come back and finish watching the interview as well.

And a week after we post this, we’ll post the answers to that. So Jennifer, I have some questions I’m gonna ask you about parenting children with Down syndrome. First of all, you have more than one child with Down syndrome, is that correct? Yes. I have two children with Down syndrome. So you are an expert on this topic for me in looking at the younger.

Jennifer: Yes. Yes. I feel like I’m very well versed in raising children with Down syndrome.

Tonya: So did either of your children need special medical care when they were younger?

Jennifer: Um, neither needed medical care in terms of like heart surgery or anything like that. We were really blessed with healthy, um, hearts and. Um, bodies, um, the only medical things we went through with both, um, were multiple ear tube surgeries and obviously tonsils and adenoids out for, to help with those chronic ear infections.

But that’s really all we’ve had in terms of medical issues. So we feel very blessed in that respect cause it is very common to have medical situations in addition to the extra chromosome.

Tonya: Are the ear tubes very common?

Jennifer: Very common. Yep. Very, very common. Um, heart conditions are common. Uh, gastrointestinal issues are kind of common.

Um, I, oh, we do have, you know, Joaquin uses glasses, so vision issues. Um, he had us for business. I’m just remembering he had a screw. Which is the crossing of the eyes. And so we had, um, surgery to correct that when he was young and it was very successful. So he use his glasses and, and was able to, to help straighten his eyes.

Tonya: So with early intervention services, I know with, with my children, one did need early intervention, the other did not. Um, with either of your children, did they require early intervention services before they were in preschool?

Jennifer: Yes. Both of my kids, we utilized early intervention the moment that we could.

Um, so obviously Sofia, we adopted Sofia, so we weren’t able to access that until she was close to two years old, just because of the fact that we had adopted her at a later age. So she missed out on two years of early intervention. Joaquin, my son, obviously the moment we got his diagnosis, we were calling our regional center and getting those services started.

Things that we did were music therapy, water therapy, um, Physical therapy, speech therapy, which was oral motor in the beginning, and then speech a little later on. We pretty much did anything and everything we could get our hands on. Um, and that was offered to us. We even did like social play therapy groups, um, with babies in, you know, like those Mommy and me type classes. So we loved it. It was wonderful. Early intervention was just a wonderful time in our lives.

Tonya: Your kids are a little bit younger than mine are. We had the. The OT and the um, the playgroups and things like that. But music therapy was never an offer for us, and I wish it had been. I think it’d be a great, a great addition to what, what we had seen with the kids.

Jennifer: Yeah. I feel like, uh, music therapy, if I had to pick just one, it would probably be that one because it really covers everything. Um, right. With the medium of music you. So I really loved it. We were blessed to get that when they were ready for preschool,

Tonya: then I’m assuming that they transitioned into a preschool or did you keep them home? What did you do during those years?

Jennifer: We decided to do a blended program. So, um, at three we transitioned to the special, um, special day class preschool program for two days a week, um, for a couple of hours a day, as well as the opposite days. We were able to dually enroll them in a typical preschool with support so they would get their therapies and the SCC preschool, you know, their speech, their ot, and.

Like some sup, real supported preschool programming. But then the other three days a week, they would be with their peers, their typical peers in a classic preschool program with an aide on hand to help if needed. So we loved that as well. It was the perfect. Blend of the two.

Tonya: Yeah, no, I ha I’ve not talked to anyone who, who did that.

Um, my daughter was in a preschool that was a blended preschool that was 50-50. Half of the students needed special help and the other were typically developing peers. And so my son attended as a typical peer in that program, and actually by default got the services that he needed. Because he wasn’t identified yet as needing those services.

But, um, but they both were in a, in that, so they were three to five days a week depending on, on their age at the time, cuz they were there from three to five as they moved into elementary school. Did they, um, did they, did they start out with an IEP right away? Um, or is it an IEP that they were on?

Jennifer: We had been in an IEP since age three.

So in California where we are. Um, the IEP started the moment we entered the school district at age three, and that IEP followed us through now. As we enter high school, we’re, we actually have an IEP tomorrow is transition to high school. So the moment we went into kindergarten, um, we had that IEP in place and we fought for an inclusive education.

Um, so we were able to successfully include them in general Ed for the majority of the day. Would just pull out for speech, OT, and some specialized academic instruction. But they were in the gen ed classroom with us. Both of them were, we were able to get a one-to-one para educator with them. So they had their own, each of them had their own. Um, you know, one-to-one aide support.

Tonya: Right, right. Nice. Nice. It’s, um, you know, our parents are all over the country that are listening, so each state will be different in what they can have, but I think it helps a lot to hear what other parents have had success in having or even to know what to ask for whenever you get to that, that step in your child’s education. So I appreciate you sharing that.

Jennifer: Absolutely. We are, yeah, we’re big on sharing all the, you know, the law and what, what the least restrictive environment is. And many schools will say, having an aid is more restrictive than not, and it’s actually not the case. The actual environment they’re in is the, um, is the environment not supports and services that are given to them.

So it’s good to remember. If your child needs that, it’s not necessarily more restrictive.

Tonya: I am still a novice when it comes to Down syndrome. I’m, I’ve had different connections through the years. I had the opportunity to, to have an interview last week and find out some basics. So that’ll be playing the week before this.

So those that are listening, if you haven’t listened to that one, go back and you can get a little more foundation listening to that interview too. But I’m, I’m sure that I’m guilty of some of the misconceptions that are out there, but what are some of the biggest ones that you’ve come across and how do you address those when you do hear a misconception about Down syndrome?

Jennifer: Oh, yes. So, um, one of the most common, I would say the general public is that people with Down syndrome are always happy. Um, and, uh, what I try to explain to people is, Children with Down syndrome, people with Down syndrome have a full range of emotion. So they will be happy when they’re happy and they will be sad when they’re sad.

And um, if anyone has ever met a person with Down syndrome, yes, they tend to have a really live in the moment attitude, which can be construed as being happy. But I think it’s just, uh, the fact that they are able, most are able to just be in the here and now. Um, but every child and adult that I’ve met with Down syndrome has every kind of emotion imaginable.

So, um, and then another misconception is that there’s, it’s like a one size fits all that, that, you know, if you have Down syndrome, it’s gonna affect everyone the same way. And having two children with Down syndrome, I can tell you firsthand that they are completely unique. In their needs, their, uh, abilities, their strengths, their struggles.

Um, just like my typical boys are so unique, you know, I call it my neurotypical boys. So, um, it is not a one size fits all. Um, I kind of, it’s, I would say it’s similar to like the autism spectrum disorder. Like, it, it, there’s a spectrum and maybe speech is harder for some children and not hard for others.

Maybe walking and mobility is hard for one child and it was not an issue with another. So, um, it’s, it, I think it’s important for people to remember. Down syndrome is, you know, it’s Tri 21, which is three copies of the 21st chromosome, but all 46 of the other chromosomes are mom and dad. So they’re still gonna be very much like their parents.

Um, and how that extra chromosome is reflected is gonna be different depending on the child.

Tonya: So it’s a very, it’s a very good point.

Jennifer: Some children with Down syndrome are able to read and write. Um, you know, I know some that drive a car and, and then there’s some that will never speak, do not have the ability to hold a pencil.

Um, so it’s just, it’s, you can’t assume, basically the key is you. What I try to tell people, don’t make any assumptions, of, of, that you know what a child can or cannot do based solely on their diagnosis. Let them show you what they are capable of.

Tonya: Right. So, and that, that kind of leads into my next question. Do you have any, um, advice that you would give to parents of young children who have gotten a diagnosis of Down syndrome?

Jennifer: Um, yes. So I tell any new parent that has just had a baby, um, first and foremost, congratulations. You’re about to go on the what most wonderful journey you never knew you needed or wanted. Um, so congratulations. Second of all. Um, enjoy your baby for your baby. Do not overthink or start like going down the rabbit hole of “what ifs.”

Just purely enjoy your baby. Um, having four children, I can tell you my children with Down syndrome were the most precious, enjoyable babies I’ve ever experienced. So enjoy that because the time is so short. Um, and then I would say, treat them and be with them like you would be with any other child. Talk to them. Love on them.

Give them experiences, give them opportunities. Um, do the therapies. I do recommend doing those. Um, it can only help. Um, and just, uh, believe, you know, believe that your child has value, no matter. What they are capable of. Like that whole ableism issue. Like do not assign value to whether or not they crawl at age two or walk at age three.

Like just celebrate every small moment for what it is and. And let them come on their own timeline.

Tonya: Nice. I like that. Can you share any resources or organizations that provided support for you or that you know of even that may have come into being after you needed them, that other families might wanna look for in their community?

Jennifer: Oh, absolutely. There’s, we are so blessed in the Down syndrome community because you’re gonna find things on a local level and a regional level and a world level. So there’s, I’ll start globally, there’s the Global Down Syndrome Foundation. There’s the National Down Syndrome Society, there’s the National Down Syndrome Congress.

There is Gigi’s Playhouse. There is um, uh, gosh, there’s the Down Syndrome Diagnosis Network, which is kind of like a mom support group that you get kind of connected with the same age kids. There is, then you go on a more local level and you might find in your own, you know, district or region, more local chapters of these groups.

Or for example, in our neck of the woods, some moms have created their own support groups. So a Google search is gonna just give you a plethora of choices. And, um, I would say to again, a new mom, reach out when you’re ready. Some moms need time. Um, but they’ll always be there. Um, and all of these organizations have new parent package or welcome packets.

Um, many will get you connected with whatever you could possibly need or want. Um, there’s even one called Dear Mom, that’s more like supporting the mom and our journey as moms. Not so much like clinical support or like Down syndrome related. It’s more just like taking care of yourself because that’s another thing.

Special needs moms as we know, you and I, um, we give, give, give and it’s really important to take care of yourself. So, you know, there’s organizations that support the mom as well.

Tonya: Excellent, excellent. For those that, um, that are watching or listening in the notes for this, we’ll put as many of those links as we can, and we’ll also add them to our resource page on the website so that if you’re looking, you can at least get started with some of those links.

So, is Sofia nearby or did she scoot off?

Jennifer: Yes, here she is.

Tonya: So Sofia, are you ready for some questions?

Jennifer: (To Sofia, “Come on over.”)

Tonya: So I wanted to ask you a few, just getting to know you a little bit. So what grade are you in in school right now?

Sofia: I’m an eighth grader.

Tonya: Okay. So you’re an eighth grader, so you’re about to move on to high school.

Sofia: Yes.

Tonya: Do you attend a local school or do you go online or homeschool?

Sofia: I go in in person because school is just my favorite thing to go with now.

Tonya: Excellent. And so since you go in person, you have some options. Are you involved in any of the clubs or sports at your school?

Sofia: Yes. Uh, well, I play sports, at my school, but now there’s basketball, running soccer and basketball.

Tonya: You do all of those.

Sofia: Yeah.

Tonya: Wow. I’m, I’m impressed. So you’re in school, you’re doing all these sports, we know that you’re an actress and all. What do you do in your free time?

Sofia: I go to a community theater for Adams Family.

Tonya: So Is that a musical?

Sofia: It is. I sing and dance.

Tonya: Oh, fun.

Sofia: But also I like to be in pictures.

Jennifer: You do modeling.

Sofia: I do modeling and. I love doing modeling because I can try different outfits and get selfies and pose.

Tonya: And so I’ve, I’ve seen some of your pictures on your Instagram. Do you take those yourself or does your mom take ’em for you?

Sofia: My mom does take me, but I help her.

Tonya: Yeah. Well, it, it’s, it, it’s of you, so it makes sense to do that.

So I wanna, I wanna talk to both of you a little bit about the new Hungry Games movie. Now that’s coming out in November, if I remember correctly.

Jennifer: Yes. You wanna tell when it’s coming out?

Sofia: It’s coming out November 17th.

Tonya: November 17th,

Jennifer: 2023.

Tonya: Wow. That’s coming up pretty soon. Are you getting excited?

Sofia: I’m so excited.

Jennifer: Yes. We don’t know what we, you know, we won’t have seen the movie until you do, so it’s very exciting.

Tonya: Right. And when we first connected, it was before you had just gotten the role, I think, or it was maybe before you got the role back in the summertime and or before you announced it publicly. You, you, you probably already knew at that point.

And then you were gone for what, three or four months I believe.

Voice of Tonya Wollum: Thanks for tuning in to this week’s episode of the podcast. We hope you enjoyed hearing from Jennifer and Sofia, who reminded us that Down syndrome is not scary and should be celebrated.

In next week’s episode, we will continue our conversation with Sofia, who is not only breaking down stereotypes but also breaking into Hollywood as an actress with exciting projects such as the new Hunger Games movie coming out this Fall, and Jennifer will be sharing what her role is in Sofia’s professional career. Stay tuned for the second part of this inspiring interview where we will learn more about Sofia’s acting journey and other projects she is working on. Don’t miss out!

Tonya Wollum


Tonya Wollum is a disability advocate and host of the Water Prairie Chronicles podcast which connects special needs parents with resources to help them navigate parenting a child with a disability. She is the mother of 2 college-age children who have each grown up with a disability. That experience, along with a background in education, led her to create the Water Prairie Chronicles to help share what she has learned with parents of younger children to help them know how to advocate for their children.

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