Curiosity, Connection and Communication: Celebrating World Down Syndrome Day with Jacks Basket and Tonies

All right, welcome back, No Problem Parents. Hey, I have a couple of really amazing resources for you today that I wanna highlight, both of which we've highlighted on the podcast before, but I just wanna share a little bit more with all of you today about the impact that each of these companies are having on the way that we communicate with our kids, teach communication through curiosity, not only just about learning in general, also about learning how to celebrate differences and learn about the uniqueness of others. So today my guests are both Drew Vernon from Tony's, the Tony Boxes, you've heard me talk about those before, and then also Carissa Carell from Jack's Basket, an organization that's dedicated to celebrating children with Down syndrome and advocating for acceptance and they're doing so much more than that. March 21st was World Down Syndrome Day and we didn't get this episode out in time for that but I still wanted to make sure that we acknowledge it in this month of March. I decided to pair these episodes together to remind us of the power of curiosity and learning about our differences and uniqueness and how we can help to teach our kids. And so whether through storytelling with Tony's or the inclusive mission of Jack's Basket, we are encouraged to embrace diversity, celebrate our differences, and create a more inclusive and accepting world for all, starting with our kids. So fun. I have huge

respect for both of these companies. I hope you enjoy today's episode. Hey there, parents. Thanks for listening to the No Problem Parenting Podcast. Are you ready to become the confident leader your kids crave you to be? Are you losing your crap on your kids, yelling, giving in, and exhausted at the end of every day? You can start building confidence in your parenting immediately, whether your child is a toddler or all grown up and still living in your house. Don't make this parenting gig harder than it needs to be. Register to become a No Problem Parent. It comes with an app so you can listen to the tips and tools just like you're listening to this podcast. Click the link in the show notes or go to no problem. Parents.com become a no problem parent today.

If you haven't heard my previous episode with Drew Vernon, you're going to want to go back and listen to episode two 44 to learn a little bit more about the company, but Tony's are an innovative screen-free audio storytelling experience that is designed to spark curiosity and imagination in children. The Tony box is like a five inch squeezable speaker with cat ear shaped buttons that are the controls. And then what you do is you take this little three inch tall magnetic figurine known as a Tony and you put it on top of the box and then it reads you a story. Or you can get creative Tonys and you become the character and you get to create your own story and or communicate back and forth with say grandparents or friends or family that you don't live near.

Drew Vernon is the director of education for Tonys, previously the marketing director of Tonys. Welcome back to the show. I'm excited to have you talk to us a little bit more about what Tony's is doing for teachers and a little bit more about Tony's learning programs. Yeah. So when I came to Tony's as the marketing director, I was doing most of the marketing jobs, you know, shooting TV commercials and catalogs and all of that. And one of my passion projects was education. I had actually started my own state licensed daycare back in Connecticut. I previously worked for Lego where I had some success with educational programs. And so one of the first programs I put together, Tony's was called Tony's for Teachers. And that was talking to teachers about the classroom opportunities for using the product and using it in circle time.

And that program took off pretty quickly. And then I started having other folks reach out to me. So I started to have librarians reach out and healthcare workers and social workers and speech language pathologists and all sorts of different folks started reaching out and it eventually grew larger than Tony's for teachers and became known as what are now called Tony's Education. So now there's kind of a comprehensive effort to explore the different applications and uses based on different educational and professional settings. Amazing. And just such a short period of time to all the things that you've been able to develop and put together. So you guys have a lot of resources you do like trainings for teachers or educators. Yeah. So this is the exciting part is I was doing this. I call it my side hustle because this is the job that nobody really asked me to do. It was just what I was doing in my spare time. And as of March this month, I'm actually transitioning to lead the education department for Tony's and to take this on full time. So I'm just kind of getting started with additional resources and trainings for different types of educators.

We have an extensive Facebook community based on the type of, you know, educator you are. And I do offer, you know, webinars and online demonstrations for anybody who's getting started or who's looking to help get their organization started. So we've got Tony's for teachers. We've got Tony's for librarians.

We've got Tony's for health care. We've got Tony's for social welfare. Tony's for special needs. There's kind of a whole spider web of different groups.

And I like to encourage people to explore the ones that are most relevant to them. We kind of have a central fan group. It's called Tony's Community. And if you start there, you can usually find your way around to any of the other groups that interest you.

Just describe for us maybe a scenario or two of how the teachers are using Tony's in the classroom. We have divided kind of our assortment into four different centers. The first center is called the Reading Center. So that's figures that have a companion book.

We don't sell the books. We're not a book producer. But if you want to listen to Dr. Seuss or Roald Dahl or Corduroy or Paddington or Chicka Chicka Boom Boom or Llama Llama or any of these that have books, that belongs to our Reading Center where kids can listen to these and they can follow along with the books.

if you'd like to purchase those separately. The second one is our Mindfulness Center. So it's really important to help kids learn social and emotional development, self-regulation, breathing exercises, mindfulness. That's all part of our Mindfulness Center.

We've partnered with Calm, with GoNoodle and others, and some of our original content. We have a Discovery Center, which is our nonfiction content. So we've partnered with National Geographic, PBS Kids and others to bring nonfiction content to the Discovery Center. And then finally, we have the Play Center, which is going to be about interactive play and music, so getting your wiggles out.

And so these four centers are being used in the classroom in different ways. It can be part of circle time. It can be part of independent listening. A lot of teachers will use it as kind of like a reward for kids to finish an activity early.

They can go listen to a Tony box for a few minutes while the other kids wrap up. But there are a lot of different ways to use it in the classroom. Is it sufficient to have one Tony box in the classroom or what are you hearing from most teachers? Yeah, the Tony box is considered to be an individual to small group listening device.

It's not going to be loud enough for an entire classroom. So we usually suggest having one box for every about four to five children. Oftentimes, as you know, in education, whether you're a daycare provider, preschool, elementary school, funds are almost always an issue. Budgets are tight.

So talk about the investment for the educators and then also maybe some creative things that teachers and educators are doing to to bring Tony's into their classroom. Sure. I'm really interested in making this available and affordable to educators. So we start kind of with educational accounts that provide a discount.

The Tony boxes are about 20 percent off. So instead of paying $100, you're paying $80 for the 20 boxes instead of $20 for the figures, you're paying 12. And so that can be up to 40 percent off the figures. We also offer tax exemption and free shipping for educational accounts.

As far as funding, we found success, you know, tapping into different types of budgets. Sometimes it's a curriculum budget. Sometimes it's a materials budget. Sometimes it's a technology budget.

and we're seeing more and more success with teachers writing state or federal grants. So I had a recent example of a teacher in Omaha that was part of a consortium covering 17 school districts. She actually wrote a grant for over $100,000 and she spent half of it on Tony's and half of it on books to match the Tony's. And that's kind of like the best case scenario.

But there are a lot of other programs that, you know, you can get anywhere between, you know, $1,000 or $10,000 for the purchase of educational materials under which Tony's would qualify. That's amazing. And I just recently had a co-founder of Impacts on the show. They provide school supplies to schools. Parents can buy the school supplies right online. Again, I want to connect you with Claire Richards. This could even be something where schools have that option for parents to donate Tony's as one of the classroom school supplies. So there's so much with Tony's in education and support for kids. So let's talk about, I didn't know this since the last time we talked, but you've added the Tony's for librarians. I'm curious about that. Yeah, we had a state representative from Delaware actually contacted me and said, hey, I want to put Tony's in every public library in my state. So we did a statewide program where now you can go to any public Library in Delaware and hundreds of other libraries in the country. And they're using these in kind of different ways as well, primarily in-center. So kids can listen to Tony Box's while they're there. We're also having circulation. So you can check this out as part of the library of things. And these are very popular items. There's usually a wait list to get your hands on one in a library setting. But if your local library doesn't have one, I would encourage

you to ask them about it or to have them reach out to us here and we can help them get set up. And then also you're doing some work with hospitals. Yeah, this is one that's kind of close to my heart just based on some programs that I've done. I did a recent donation to Primary Children's Hospital here in Salt Lake where I live.

And one of the things that I learned while I was there was that they had this music room. It was named Sophie's Room after a girl who unfortunately passed away from cancer. And one of the things that they started doing for families was recording the children's heartbeats and giving that to parents on like a little flash drive. And I saw them doing this and putting it on the flash drive.

And I said, hey, I'd like to donate some of these plush dolls. We have plush characters that work just like Tony's. they've got the same technology inside. And so now they're putting these heartbeats on the teddy bears and they're giving those out to parents. And so that was just kind of like a touching example of using the creative Tony technology in kind of a heartfelt way. But for any kid dealing with challenges or ailments, you know, having the companionship of a Tony box is a great thing to have for a child. And I'm a huge proponent of putting them in these types of situations.

Drew, I just think the world of you. You're amazing. That just really touched my heart. I am super happy to be partnering with Tony's and to be sharing the message of Tony's, your resources, all of the things with my listening audience.

Tony's for special needs, Tony's for community, for teachers, librarians, hospitals, just a wealth of resources. And of course, all of this boils down to being able to help the kids learn literacy and build curiosity and get off screens. It's just also amazing. Go to Tony's, T-O-N-I-E-S dot com or check the links in the show notes for more information.

Really grateful for you. Thanks again for being on the show. It's my pleasure. Thank you again.

All right. My next guest is Carissa Correll, founder of Jack's Basket. Jack's Basket is dedicated to celebrating children with Down syndrome and advocating for acceptance and inclusion. Carissa is going to talk about the organization's impactful initiatives and the importance of embracing diversity and recognizing the value of every individual. Since 2014, Jack's Basket has celebrated babies across all 50 states and over 40 countries. In addition to celebrating the birth of children with Down syndrome, Jack's Basket is changing the narrative around receiving the diagnosis by educating medical providers with the tools to communicate the diagnosis to the parents accurately and informatively. I'm excited to have you on the show, Carissa. Welcome. Thank you for having me. Let's just start off with your family's journey.

Yes. Well, I grew up in rural Minnesota and came to the Twin Cities for college and met my husband in college and got married 16 years ago already. And we became parents in 2011 with our oldest, Luke. And then two years, almost to the day, we were about to deliver our second son, Jack.

And really that's where a different journey started for us and an unexpected one. And that I was very thankful his labor was going much faster, but all of a sudden it dramatically changed when his heart rate had dropped. I can remember the doctor pushing me to the operating room and a nurse saying to my husband, we'll be back for you. So he was right by my bedside until everything went kind of crazy and they needed to get this baby out.

And I remember a man putting a mask over my face because I was going to need to be put under for the delivery because it was so quick. And I said, can you go get my husband? And he said, I'm sorry, he cannot be in here. And I awoke to a woman saying my name and I said, can you go get Chris?

And she said, well, after you recover a little longer, you can go to be with him and your new baby. And in the meantime, while I was recovering, a nurse and a nurse practitioner walked into that original delivery room where Chris was waiting and was carrying a baby and handed the baby over to Chris. And the nurse practitioner said, are you aware of trisomy 21? And he must have looked confused because she continued saying Down syndrome.

She listed off all the characteristics that Jack was showing and said, well, just enjoy your baby. And she left the room. And Chris really reflects at that point in his life, he hadn't had much experience with someone with Down syndrome. So he really felt like, what did this mean?

Would he live? What does this mean for our two-year-old at home? Like, how is this going to change us? And he kind of reflected that it was about 45 minutes before I was brought back.

And I was still really grieving how the birth happened. I certainly was not prepared to have him say, this is our baby and they think he has Down Syndrome. So Chris had that role of sharing that unexpected news with me. And I can remember every, you know, thought that flooded through my mind, a same similar to Chris of like, how will this change us? What will it be like having a child now with special needs? Just all the shock and fear and confusion, just crying out those early hours.

and I remember a nurse coming in the next morning and her name's Diane. And she looked at Jack in the little bassinet and she said, look at your precious baby. And I always say that when I feared that the world wouldn't accept my son because he's different, a complete stranger came in and saw my baby for who he is, a baby, not a diagnosis. And as we had been praying for this sweet baby boy growing in my womb. Obviously it was surprising and life-changing, but that was really the hope and the reminder that he is uniquely created, fearfully and wonderfully made.

He is a gift that we didn't know we needed in our lives. And as the, you know, our friends and family just came alongside us and of course would love us because they love our little sweet one no matter what, we came to realize that families, as they were navigating, however they responded to that diagnosis, as they learned more about their child and fell in love with them for how they uniquely are, they wouldn't change their child. They'd just change how the diagnosis was given to them.

And when people ask, like, how would have you liked to have been told Jack's diagnosis? Well, one, I would have loved to have been with my husband at the time that it was given. I feel like, you know, it was given in kind of an assumptive, but also kind of insensitive. Are you aware of trisomy 21?

My husband's very intelligent. He is, but we don't use that language. But what if we would have started of just saying, congratulations on your new baby, right? Like this is a new precious life. And ultimately when we start these discussions and, and again, there are in life, some very difficult conversations and what we would say objectively bad, but research shows that parents wouldn't put down syndrome as a bad thing or something that people need to start the conversation with.

I'm so sorry, your baby has Down syndrome. So that kind of started this really new journey of learning more about Jack, connecting with this loving and supportive community of parents that were, you know, loving and living their lives with a child with Down syndrome. It really just fueled my passion to say this needs to change at the very beginning with how providers are sharing this news with new families, but also why these families are leaving the hospital or the clinic without any information, but first and foremost, without hope. We need to get them a connection to this community. And that's the thing that I was really on a mission to change.

Tell us when you decided it was on your heart to start Jack's Basket. When did that actually begin. How old was Jack? He was about nine to 10 months old. And I had gotten connected to a classmate from college, someone they knew just delivered a baby with Down syndrome, a baby girl.

And the way that that family was treated in the hospital, and they were there for three weeks. And this mom, when I got connected to her and heard her story, and it was shouted out in the room seconds after her daughter was born. And I just kind of kept thinking like, no, this needs to change. So as we were approaching his first birthday, I thought what a way to celebrate the year that we've experienced with him, that there were many tears on the actual night he was born that I wanted to provide hope to a new family. So we put together a letter and we put it in a basket with newborn gifts, because whenever you have a baby, you get showered with gifts.

And then we put all of the resources that are free and available to families in that basket. Because I also, when I was connecting with that mom, it was, she hadn't met one other parent and her child was now months old. And I, and you could just tell and feel the grief that she had, how this was still impacting her. And I just felt like, what if she would have gotten connected to someone sooner, just having glimmers of hope that I feel like my heart broke for her of what she didn't know was out there. And so what was initially a thought to celebrate this baby at the hospital that Jack was born in 2014, I found out through social media that a family had received a basket we left on Jack's first birthday. They had a little baby boy. The mom expressed that it brought them hope for the future with their new baby boy, but she said it was the only congratulations she received while they were in the hospital. Again, it was a bittersweet, like we got to welcome and celebrate another little boy in honor of Jack's first birthday, but it also was just the reality that they were treated differently. No one congratulated. How can you not think that once you go home, that the world is, it's just going to be challenging and hard because of how the world sees you, not because your child has this diagnosis, but how society views your child.

And so I basically drove to every Twin Cities hospital and I'd swing by the nurse's station and say, hi, can you tell me what you do when a baby's diagnosed with Down syndrome? And again, 2014. And they'd look at me and say, I don't know. And, you know, there was an outdated binder that had all the delays and all these outdated pictures that scared me. That's the binder I got. And I thought, this isn't what families need to hear. They just need to say, hey, how are you doing with this new news? But first and foremost, congratulations. So what then that grew and We had an opportunity to media picked it up of what we were doing and we started getting requests from all over the U.S.

And today we have celebrated babies in 40 countries in all 50 states because ultimately my heart is every baby deserves to be celebrated. Every family deserves to be congratulated. And really it's a chance to have us all reflect of, do we see each person? somebody created with a purpose to do amazing things. And I'm hopeful that through the message of Jack's Basket, that is happening. And communication is a skill. So I teamed up with what is now our medical team on the Jack's Basket board and committees to create these tools so that providers can be prepared to deliver unexpected news.

Many families are finding out with screening tests. They're easily given at the first few weeks of pregnancy. Oftentimes families are finding out what their desire is to find out the sex of the baby, right? Am I having a boy or a girl?

And that is where they're getting this unexpected news. So what we were hearing from our families that received that prenatal diagnosis is it's oftentimes given on the phone. We've had families given this news in a voicemail. Oftentimes it's given by someone they don't have a relationship with or have had previous care with.

And then there seems to be a lag in time from when your OB or whomever is caring for you refers you to a maternal fetal medicine physician or clinic. Seems like an eternity of time, which only leads you to Google what Down syndrome is. And still today, even though this has been around for so long, it's outdated information about Down syndrome. And let me not skip over the reality is that oftentimes when a baby is prenatally diagnosed, the first and only option that is given to them is to terminate the pregnancy.

And so that is a reflection of what I believe in what our team has recognized as provider bias, because the role of that provider is not to influence decision making for the family. It's to provide informative information if it's about the diagnosis, the resources. But ultimately, we've got to reflect on what is the care prenatally. And so we wanted families to hear from providers, congratulations, and providers that are caring for newborns with Down syndrome of what they see while they're caring for newborns.

But then we also have four families as a part of this tool sharing about their four different experiences when they got the diagnosis, when they delivered their baby, and what life is like. And there's a common theme through all of that, from the providers to the families of saying your baby will change your life for the better. As you lead a parenting podcast, we know that ultimately we can't foresee what the future is for any of our children.

The experiences we'll have down the road, but we understand more about our baby that they have an extra chromosome in each cell of their body. But ultimately, we can't measure the impact and the value and certainly shouldn't. Unfortunately, it is happening. And so we thought we need to continue to create these tools for medical providers so they have some hope because that's what the community wants.

And that's what we this is our everyday life. We wouldn't change our child for the world. But I will tell you, I'm changing the world because of my child. Oh my gosh, I've got all the feels and any parent when you bring your kiddo home, you know, there's so much love and you're so excited for their future and you have no idea what their future is going to hold. But our kids do oftentimes make us better. And I think that's a nice tie into the theme of Jack's basket.

Yes. And that's our phrase. You make me better. That ultimately each of our lives have the ability to make each other's better. Right. And that certainly is not dependent on the number of chromosomes a person has. Right. I believe that Jack wants to be loved and respected like any other. And he's helped us to be more patient and accepting of others with differences to slow down and appreciate the little things.

do we see people worthy of celebration anyone and that's the thing that has been the reminder that I feel like Jack has taught me and everyone that knows him to see people as someone created with a purpose worthy of celebration that has a story to tell and that can teach us and so as our society ranks people based on their ability that ultimately the best lessons have been, you know, in, in how Jack's life has impacted all of us for the better. I always say like in the nine years, I've learned a little bit about Down syndrome. I've learned a lot about Jack and we make assumptions and generalizations about people. And I think, unfortunately, we are limiting the potential of those around us because we don't believe in them.

and he's helped us to believe in everyone. So March 21st is Grilled Down Syndrome Day. It's a day to really recognize the individuals with Down syndrome that make our lives better. So we would hope you could join in, in just, if it's spreading awareness, just sharing a story about your relationship with someone with Down syndrome, that would be wonderful. If you spread awareness about the work that we're doing and celebrating and welcoming these babies, that's also amazing.

Um, we have a backyard burgers and baskets. That's a real tangible, fun community event that can happen anywhere you live. So you can find all of that on the website. And then, uh, we have a big fall, uh, gala it's called the, you make me better gala.

And it's, um, held in Minneapolis, but live streamed all over the world. So that's been, uh, something that we just fill that room with ton of people that want to celebrate the lives of people with Down syndrome and just share that message of you make me better. And if anyone knows of a family member or friend that is delivering a baby with Downs, what can they do? How can they get a basket? Yes. So on our website, you can go and request a basket for that new family. We have over 85 local volunteers around the U S. So if we have a volunteer, we would get them connected locally in their area to have that basket delivered. We support families from the time of the diagnosis. So that could be prenatally or at birth. So you can go on and request a basket as a gift from you. Providers can request baskets, parents themselves and family and friends. So awesome. So parents head on over to jacksbasket.org. You're going to learn about how your family can be supported by Jack's Basket. If you are a medical provider,

the resources that are available to you in your clinic or your hospital. You'll also learn about ways to get involved and support Jack's Basket and other families raising children with Down Syndrome. There's events, there's ways to give. It's all located at jacksbasket.org.

All right, that's it for today's episode of the No Problem Parenting Podcast. Hey, thanks guys for tuning in. If you found value in today's episode, click the subscribe button and share it with other parents who might need a little boost. Stay connected on our socials by following at No Problem Parents for more parenting tips and get your free download of the 60 ways to respond to your kids without losing your cool.

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