Happy Birthday Nicholas! Celebrating babies with Downs Syndrome via Jack’s Basket with Special Guest Carissa Carroll

Hey, welcome back No Problem Parents. Today's episode is dedicated to my nephew Nicholas. Happy birthday Nicholas, the big one nine today. Nicholas is 19 years old today.

Happy birthday Nick from Auntie Jackie. We can't wait to celebrate with you tonight buddy, which is likely to include either a hamburger and fries, maybe a steak, but definitely a Sprite, and hopefully a trip to the shack this weekend with some karaoke and hockey. Can't wait to see you, bud. Welcome to the No Problem Parenting Podcast. Turn behavior problems into no problem with Jackie Fineman. Are you ready to become the confident leader your kids crave you to be?

Do you want to learn how to make parenting easier and more fulfilling? Whether you are at your wits end or you want to have more fun as a parent, you're definitely in the right place. Now here's your host, Jackie Finneman. Nicholas was born just a couple of weeks after my mom had passed back in 2004. And I just remember thinking how much my mom would have loved to meet him.

Of course, my mom had a heart for kiddos, especially those with Down syndrome, but all kiddos with different abilities. And it's because of my mom that I learned about how to have conversations and introduce myself to fellow peers and kids as I was growing up with different abilities. And so in today's episode, you're going to learn all about how you, the parent, can help your kiddos make friends with people that maybe don't look the same as they do, or talk the same way that they do, or interact the same way that they do. But trust me, making a friend with a kiddo who has Down syndrome or another different ability can actually be one of the best friendships your child will ever experience in their life. Help me welcome Carissa Carell today to this show. Carissa is the founder of Jack's Basket. She's an alumni of Bethel University and the University of Minnesota. She taught at elementary and collegiate levels before a sweet baby boy named Jack changed her heart and passion. After an abrupt and assumptive diagnosis experience, Carissa felt led to start Jack's Basket. She wanted to make a change for future parents, ensuring that they felt their child was a reason to celebrate and have opportunities to connect within the community.

Carissa presents to medical professionals about how to deliver the diagnosis without bias. She works with the Jack's Basket Board to further this mission and connects with volunteers who deliver baskets to the hospital when a baby with Down syndrome is born. When not pursuing her passion, Carissa can be found enjoying an early morning long run, quality time with her husband, and soaking up the days with her two sons and her daughter.

I'm incredibly thankful that Carissa joined me for this episode, and I'm excited for you all to hear about Jack's Basket. Stay tuned. All right. I'm so excited to have you here today, Carissa. Welcome to the show. Thank you for having me. So let's get in. I read a little bit of your bio, but let's get into just a little bit of your background and why you started Jack's Basket and maybe your family's journey with Down syndrome. 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 traveled and did all the things when you first get married. And then 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 in 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've 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? how, I mean, how would this, 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 because I was the crazy lady that filled out the birth plan for the second child. So that gives you a little indication of me. 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 of, you know, I'm a very planned out. I love to be in control and ultimately we're not right. And, um, just crying out those early hours. And, um, 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 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 um 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.

But I just, 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. And, you know, and we need to get them a connection to this community because getting any unexpected diagnoses is feels you're alone and you're isolated.

And then, you know, how how does that impact their ability to accept their new lives? And that's the thing that I was really on a mission to to change. that it's incredible and I started following you guys I think maybe a year or so after you started Jack's Basket I came across you maybe on Instagram I can't remember how long ago it's it's been quite a while but I just remember thinking oh my gosh these people are a gift what a great idea what a great thing to do when my nephew Nicholas was was born and this episode is airing on his birthday I was excited but not being the parent being the sister-in-law I wasn't sure if I could be excited because I didn't know how this was affecting my sister and brother-in-law you know it was like I didn't want to be insensitive to that either because it's scary news if you don't know the outcome and how how he's going to do is he he's going to be in the NICU for a while is he going to pull out of the NICU is he going to be able to breathe on his own or do all these things like you don't know at first. And I didn't want to be insensitive to that. And then I remember being at the hospital and just going to see him and I couldn't help it. I had, I just instantly loved him. He's just the most beautiful little guy and welcomed him into the world and was just excited to have him. And so I love so much what you guys are doing. Tell us when you decided it was on your

heart to start Jack's Basket? When did that actually begin? How old was Jack? So about nine to 10 months, he was about nine to 10 months old. And I had gotten connected to a classmate from college. It was like this connection of 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, um, 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,

And 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 of this, how this was still impacting her. And I just felt like, what if she would have gotten connected to someone sooner of just, just having glimmers of hope that I feel like my heart broke for her because 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 and 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. So, 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 back when we would have a friend that'd have a baby and you'd show up at the hospital. Well, I would do that for my friends 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 over 6,500 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 as somebody created with a purpose to do amazing things?

And I'm hopeful that through the message of Jack's Basket, that is happening. That's so incredible. So great. And I love also that you're starting at the hospital.

You're starting with the people who are delivering and caring for that baby in those urgent moments. The birth doesn't go as expected. And whether you knew you had the diagnosis, you know, ahead of time prenatally or you didn't, you've got your educating staff and you have your new prenatal consult film that's out. Can you tell us a little bit about that?

Yes. Yes. Well, my background is in education and I kept, I have so many friends that are healthcare providers that they are so intelligent and so smart and they know the kind, like what the diagnosis is or whatever it is in their, in their area and their field, but the communication is a skill. And 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.

And so, you know, really getting a chance to hear from the families. 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? Of just, am I having a boy or a girl? And that is where they're, 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. And so what we, yep. And And certainly COVID also impacted that for in the fact that you weren't even face to face with your provider.

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 so we wanted to make sure with, 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. 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 had, 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. And as you lead a parenting podcast, we know that ultimately we can't foresee what the future is for any of our children. Right. The, the, 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. You're just, this is so incredible. I I've got all the feels as you're saying everything that you're saying. I'm just so excited about it. 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. And, um, you know, 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 just slow down and appreciate the little things as, you know, with taking a newborn home with down syndrome, there are things that are unique to, you know, if it's low muscle tone, which impacts feeding, but rather than you know, me looking at an example, we have a speech therapist, an OT, a PT, rather than looking at it as I have to go to that, that I get to bring Jack to a group of individuals that have devoted their lives to helping us help him reach his milestones. And, you know, as I see him working so hard on simple things like swallowing or writing his name or this or that, when I reflect

on all of the things that I've worked super hard, whatever it is that I've set a goal and had an accomplishment, what do you do when you reach that? You celebrate big time. Well, ultimately, the little things that are to us are maybe bigger things to Jack, but do you know what we do? we celebrate him. We also, he's allowed us to see what is worthy of celebration. And I think of, if somebody would have told me it was going to take Jack two years to walk after hours of physical therapy that we got to know as therapists so well that she's like an aunt to us. But it, you know, when he started walking, we just about threw a party. So I have a daughter also was born two years after Jack and she started walking at 10 and a half months. And I just about pushed her down because I was like, no, no, no. First there's three kids under the age of four, but ultimately,

um, 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 and, um, you know, so much, I mean, we could go on forever about just the, how we value and rank people 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, we should believe in everyone.

I totally agree. And I can say for my nephew, Nicholas, oh, I could get emotional talking about him because he is just literally the light of our family. And I could be having, you know, a stressful time or horrible day or just like lots of, you know, burden or whatever frustration. I see Nicholas and it just like literally within minutes, that's all or seconds.

Sometimes that's all gone because he is so patient. When you think about parents need to be patient or siblings need to be patient that Nicholas is so patient. I mean, you know, he has he wants to communicate something with us. And it takes a minute or two, especially when he was younger, to know what he needs.

He's so loving and forgiving and intuitive of other people's feelings. So there's times when like my husband and I would be, you know, sitting on a couch at a family get together or something. and Nicholas will come sit in between us. And he would take my husband's hand and my hand and he would join our hands together. And it was like, how do you know that maybe we were not like, maybe we had an argument that day or something, but he's just like emotionally intuitive to that.

And he would, he, you know, connect us. He's just the sweetest. And then he's also just excited and fun. And he'll laugh. Like he just brings pure joy. And it doesn't mean that he He doesn't, you know, have those times where he misbehaves or, you know, he digs his heels in and doesn't want to do something that you want him to do or whatever.

But overall for Nick's story is that he is just, he's just happy. He's a gift and he teaches you about, you know, living in the moment and not sweating the small stuff. That's for sure. And of course he loves hockey and music and musicals.

So he'll get you singing anytime you're around him. But yeah, I just love your mission and your theme. You make me better because he, my nephew certainly does that for our family. And then another thing that I wanted to talk with you a little bit about today, though, is, you know, that like we were saying, the perception or people don't understand when someone is different.

How have you guys experienced that with Jack? And what kinds of things do you do to maybe help friends or family or other people in the community? You know, kids are curious. kids are so curious but oftentimes parents will kind of be like oh just don't say anything yeah no or don't eat what's your experience been with that yes and you know with my background in education teaching at the elementary level I couldn't agree more that kids are curious and oftentimes it's sometimes us as adults that we've had more life experience but sometimes that's framed up our assumptions of how things should go that, you know, so this is a hard situation.

We were out and on a bike ride and we were in an area of a neighborhood where there was someone that hadn't met Jack and this little one had said, what's wrong with his face? And my youngest daughter, she's almost as feisty as I am. And she goes, who are you talking about? That's my brother.

and he's got down syndrome now. Okay. Well, as much as I'm like, yep, first and foremost to recognize she did, she called him by name, right? That's who he is to her. But when I get an opportunity to talk to other moms with younger children, knowing that I had the experience, I love my parents dearly, but when we were out and we mentioned anything, we were very observant, curious kids, my mom would shush us. And that sent a message to us that something was wrong.

But if it was a little person, or if it was someone of a different race, it was maybe we hadn't had any experience just like this young girl did. Now, it doesn't mean that it didn't hurt when this young girl had said this. But ultimately, I do welcome people to say, you know, instead of us as parents focusing on what people look like, we focus on who they are or who they may be. So I would welcome another mom to come over and say, you know, encourage the child to say, hi, what's your name? Because that again is once you start a conversation with someone, it's I recognize you and I'm taking the time to learn more about you because although Jack's genetic makeup is different than someone else that doesn't have an extra chromosome. He has interests just like Nicholas of music and Jack loves to play with cars. He loves hockey also. And in those things that not emphasizing what, or like what someone looks like or is doing, but Matt rather who they are. And so I always kind of steer the questions to be like about the, let's go up and say, hello and say, what's your name? What do you like to play with at the park? You know, to make it more about instead of those people, if like, I'm going to take a courageous step and ask, because if I,

as a parent, try to answer that question that somebody has about Jack, I'm kind of leading off of my assumptions about another child. I really ask parents to think about their response. And I encourage as a child, as a parent of a child with special needs, it would mean a lot to me if you came over and said hello and asked Jack his name, what he likes to play with, how old he is. And I may have to help translate because of his verbal ability, but it shows me that you see him as a boy and like a potential new friend.

And so my, when I speak to mom's groups, it's, you know, not a matter of if your child is going to ask a question about mine, it's a matter of when and how are you preparing yourself to respond? Because there's also been heartbreaking, you know, experiences for our families that says, oh, that boy just has a disease of not knowing anything. Well, my, my child does have a cognitive delay, but he doesn't have a disease of not knowing.

He knows quite a bit, but how that response of that parent to their child just encouraged the generational ignorance that, um, that I think in, in time might not allow for a conversation like that to happen in that moment, but maybe just say, Oh, I wonder what his or her name is and what they are here at the park at, or what at the grocery store. I wonder what they were shopping for versus making it about what they look like or what they can or cannot do.

Right. I agree. And I think there's been times when I was a paraprofessional and I did some afterschool care for some kiddos with Don's. And I remember just being out in the community with them and getting the looks or the kids that are pointing and the parents leaning over like, you know, shushing.

And I would just, I'm kind of bold. I would just kind of notice that they were curious. And so I'd go over and say, hi, this is Melissa, or this is Sue. And this is, you know, and I would say, and she has Down syndrome and I would just name it and out it right then and there, because then the kids kind of go, oh, like, what is that? You know? And so it's, I think it's okay to say it's Down syndrome with these littles that are, because they are, kids are so curious and they just want to know, like, sometimes they look shy or almost afraid because this person looks different and that's okay. But in no problem parenting to it, I help parents become the confident leader. I say their kids crave us to be, our kids crave us to be confident leaders. And so as a parent, if you're uncomfortable seeing a child that looks different, whether it's down syndrome or, you know, whatever diagnosis they may have that it's okay for that parent to go over to the other parent and ask if they can introduce their kids. That's like, to me, the most heartwarming thing is like when a parent can come over and say, hey, can my kiddo meet your kiddo? Yeah. And also, you know, not knowing even how that interaction may go of like in Jack was, you know, depending on the environment too,

He's maybe overly stimulated or he's, you know, whatever it's, it's just the intent behind it versus, um, because he is a joy, but he's also as in any kid, sometimes unpredictable in how he, if he responded. But, you know, the thing that I think too, is just to assume best intent because I could be looking to be offended. Like, oh, cause I, I do have, I've heard that and also feel like sometimes people are looking for that, unfortunately.

And as much as that comment hurt from that little girl, and I know she didn't mean to, but the impact it hurt, but it also created an opportunity for me to talk to my daughter, Taylor, about like how that impacted her. But it also encouraged me that she's going to speak up and she's going to, and, and there are things as a parent, I could have never taught my two other kids, Luke and Taylor, if Jack was not a part of our lives. And that goes back to Jack, you make us better. And Taylor's probably more empathetic and compassionate and kind because of the impact of Jack in her life. Absolutely. I wholeheartedly believe that with my, with Nicholas's sisters and our son and yeah, Nick and Andrew, just now that our son's driving, I mean, they can just go hang out and Saturday nights for the boys. And they just, you know, he, and, and Andrew has been able to do that with his friends too. Cause even as teenagers, it's like, okay, now what do we do?

we've got Nick with him. He's not talking a lot and that can be uncomfortable or does he, kids are just curious, but just normalizing everything from, he is this, he's a teenager, just like any other teenager. That's, you know, we could talk for hours. I could literally talk to you forever about this. You have a couple of fun things that you do with Jack's baskets, besides bringing the baskets to welcome a baby into the world. You also have a birthday club and the burgers and baskets event community events. So can you tell us a little bit about those? Yes. So, uh, March 21st is a global worldwide event, uh, world 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, um, just sharing a story about your relationship with someone with down syndrome, that would be wonderful. Um, if you spread awareness about the work that we're doing and celebrating and welcoming these babies. That's also amazing. 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 we have a big fall gala. It's called the You Make Me Better Gala, and it's held in Minneapolis, but live streamed all over the world. So that's been something that we just fill that room with a ton of people that want to celebrate the lives of people with Down syndrome and just share that message of you make me better. All right. Awesome. 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 would, 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. And so you can go on and request a basket as a gift from you. Providers can request baskets, parents themselves, and family and friends. Gotcha. So all of that information is at jacksbasket.org. And on there, you can also find the prenatal consult film. You can find a little bit more about your story, Jack's story. And you're also on Instagram, Facebook, and LinkedIn. So I'm going to put all the links in the show notes so that people can easily reach out and learn more about Jack's Basket, your mission of You Make Me Better and get in touch with you guys. Thank you, Carissa, so much for being with

me today. And happy birthday to Nicholas. Thank you for tuning in to the No Problem Parenting Podcast. Join Jackie next time for more tips, tools, and resources that will help you become the confident leader your kids crave you to be. Who do you know that we could support on their parenting journey. Like this podcast, subscribe, share, or leave a review of the show. Your support of the No Problem Parenting podcast pays it forward and helps us help more families.

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