In this episode, I interviewed Summer Adamson, a children’s book author, influencer, and passionate advocate for children with Down Syndrome. Summer shared her deeply personal and inspiring journey of motherhood, particularly focusing on the surprise diagnosis of her third child, Jayne, with Down syndrome. We delved into the initial shock, the challenges, and the immense growth and joy Jayne brought to their family.
Summer opened up about the importance of celebrating each child’s unique milestones and the power of positive, person-first language. She provided invaluable advice on teaching children inclusivity and kindness, drawing from her own family’s experiences and the special bond between Jayne and her siblings. We also explored the profound impact of faith in their lives, highlighting Jayne’s deep connection with Jesus and how it has provided her with strength and courage.
Additionally, Summer introduced her upcoming children’s book, “A Little Extra Jayne,” inspired by her daughter. The book aims to help children find common ground with those who have Down syndrome, and establish more relationships and friendships.
This episode is a touching reminder of the power of love, acceptance, and the incredible lessons we learn from our children. I hope you find Summer’s insights as inspiring as I did!
For more on Summer and to preorder her book, visit @a_little_extra_jayne on Instagram or https://www.alittleextrajayne.com/
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Transcript:
Summer, I'm so excited to have you on my podcast today. You have such an extraordinary story and I just can't wait for everyone to get to know you. But for those who don't know, can you just give us a little intro on who you are and what you and your family do? Um, my name is Summer and I'm, first of all, I'm so happy to be here.
Thank you for having me on here. I've been a. long time follower and fan of yours, Corinne, um, starting out with your fashion and then with all the good you do with your inspirational messages. So anyway, thank you for having me, but I, um, I actually, so I, I live here in Salt Lake City, Utah. I have four kids, um, and love, love, love being a mom, helping them, teaching them.
It's brings me to my greatest joy. My third child, Jane, was born with Down syndrome and it was a surprise diagnosis. And ever since then, we've learned and grown so much as a family. Um, and. I gained so much experience and knowledge and I think I've, I want to share that and pass some of the things that we've learned along to others and help others that are new on this journey.
Okay. Awesome. Well, I'm super grateful that you share this because I think it is something that my whole life I've felt this desire to be kind and be inclusive, but sometimes I feel like you don't know what you don't know, you know? As I've gotten older, I feel like and had friends and, and also just had this podcast and, um, opportunities to hear from other people and their experiences, I feel like I've gotten better, but I, I'm always a student, especially when it comes to, you know, understanding families and circumstances and things that I don't know.
So I'm really excited to learn from you today. So let's start at the beginning. If you're okay with it, tell me more about how you said this was a surprise diagnosis. Like, when did you guys find out? You know, it was, it was right after she was born. Um, we felt that joy that I, we all feel when they first placed that little baby in your arms and that relief of, Oh my goodness, she's here.
And after all this waiting, you know, she's finally here. And I remember it was a snowy day in December and all of a sudden, you know, they had taken her over to clean her off and my husband was videoing and, and he just said, is she okay? And I felt this like, Oh my goodness, this like happiness filled the room where there used to be all this joy and just like, Oh my goodness, relief and happiness.
And all of a sudden this, like, what are you talking about? Why are you asking that? You know, um, and the nurses technically, I don't think they're supposed to share anything. And so they kind of look each other and then they said, Oh, she's got long eyelashes. And then they brought her over to me and they laid her on, you know, on my chest and I looked at her and I thought, Oh, she looks just like my other kids.
You know, she's beautiful. She's here. And, um, and my husband again said, is she okay? Her face looks a little flat. And, um, and, and our, my OB came over and we love him great for great. He became, you know, they become a friend to you when you're in there with them so much. And. He sat down and he said, you know, I'm not a pediatrician, but she appears to have some of the characteristics of Down syndrome.
And I think right then I just started to cry, um, because I honestly don't remember a lot after that. I mean, he went on to share a lot of things about how wonderful it was going to be. And she said, you know, he actually said at first, you have a beautiful baby girl. And I'm so grateful that that's how he led.
You have a beautiful baby girl, but she appears to have. Some of those characteristics and went on to share about, um, a boy that he knew a teenager that has down syndrome that and the joy that he brought to everyone around him. And I'm so grateful for that. But I think I, it was such a shock and so overwhelming that I just cried.
I remember the only thing I said was, did I do something? And I feel so bad looking back that I said that because yeah, In that moment, I made it seem like this was a mistake, or something that I had done wrong, or something that she had done wrong, and she's such a blessing and gift in our life, and in our family, and so, um, I'm just so grateful for her, and now I just think, oh my goodness, we're so lucky and blessed to have her in our family, and we've learned so much.
Since then, um, she had to be the nephew for a few days. And when we brought her home though, she's, you know, she was this sweet, happy, smiley baby. And, um, and she's been, she's brought us so much joy. So, but that was the beginning of our journey. And it was hard, you know, for a few months, right? I think I was still in a little bit of denial.
Um, because I didn't quite know what that would mean for her future or for our family. And I, you know, you worry, how will people treat her? Um, what will her life be like? Will she be able to do the same things as her other kids? Will she have similar experiences? Will she have friends that really love her?
And you worry about all those things as a parent. I mean, we do for all of our kids, but especially when they have this added diagnosis. Um, but what's been amazing is that throughout the years and, you know, as she continued to grow, I kept thinking, Oh my goodness, look at, she's just our baby. Like first she's just our baby and she's sweet and she's smiling and she's bringing so much joy.
And my kids, I think they were one of some of our greatest teachers because they didn't see any difference. It was just, Oh, she's my baby sister, Jane, you know? And they just loved her. And I even remember when, you know, Jane, kids with Down syndrome, typically reach those milestones a lot later. And Jane did take a lot longer to reach all of her milestones.
Um, but I remember we were trying to get her to walk. And I think the average is a year old for most typical children. And, you know, Jane was two years old and still not walking. And I think she was about 27 months and she finally started walking. I remember my cute older daughter. She was darling from day one, always trying to help her with like flashcards she'd make and helping her to learn her letters and colors and trying to get her to walk.
And I remember I had this little, her first video of Jane walking and my daughter in the background is saying, mom, look, she's walking. We thought it was going to take her a long time, but look, she's walking. It was so cute. It was like, oh my goodness. Why did we put these? Limits and these things on, on, on all of our, you know, on everyone, on our kids, on ourselves.
And I thought to my sweet Elle, she didn't, this was not a long time. This was just when Jane was supposed to walk. Yeah. It was perfect timing to her. Jane's pace. Yeah. It was, it was perfect for her. And so I, I, she, my kids have taught me so, so much, all of them. And I feel like it's been a blessing for all of us, but I'm just so grateful for all those things that we've learned.
Yeah, I want to go back to something you said a minute ago where you talked about how important it was that your doctor used such like gentle and beautiful words in that moment. And you know how words, I think about this a lot, how words matter and you know that you said it meant so much that he started with, you have a beautiful baby girl.
And so I'm just curious, like as this journey has unfolded, what, you know, how has that played a part for you as far as like. You know, people using words that matter and, and what you guys have learned and what. what you teach others and, you know, just anything in that realm. You know, I, I couldn't agree with you more words definitely matter.
And I think the, the more life I live, the more I realize, Oh my goodness, it's so important. The words that we choose. Um, and yes, that moment where he led with the positive and led with, with Jane as a child of God, as an individual and not as a diagnosis is so important. And I'd say that is one thing that I've learned.
And it's not meant to be in an unkind way. It's just people are still learning. We're all still learning, but people will often refer to kids that have special needs. Oh, that Downs girl or, um, that autistic child or, and I think it's so important to use person first language. Um, and instead say, Oh, that girl with down syndrome or that boy who has autism or that, uh, you know, child who has spina bifida, I mean, instead of calling them by a diagnosis, because we are people first.
And I think we all want to be known for who we are for our own personal strengths and, and. And not for something that is something that we have a Jane has down syndrome and and you know what she's proud of it. She knows it. But I don't want Jane to think that's who she is. Yeah, is a child of God and she has very unique talents and abilities.
to any other child that has down syndrome, um, just like all my kids. So I think that's really important. And just being kind, um, I think it's so important to always address people, um, and, and a child first. I know one of the things people have asked me is, As far as inclusion goes, one of the best things we can do is address the child.
Instead of going to a parent, Oh, what's their name? Or what do they like to do? Or, Oh, you know, talk to the child, talk to them. You know, and in some cases, obviously if the child's nonverbal, then yes, the parent can step in and say, Oh, you know what, their name is this. And, you know, but it's so important to actually see them as an individual.
Yeah. Talk to them. Oh, you know, and give them questions that are easy, you know, for them to answer, obviously. Oh, I love your dress. Or, you know, what's your name? Or how old are you? But to acknowledge them as an individual and as a person I think is so important too. So yeah. Yeah. Can you tell me about a time where that, you know, like where Jane had a really positive person or interaction where she really felt seen is, um, you probably have lots of examples when it comes to mind.
You know what? I would say. One of, one of my, my favorite experiences I still go back to, um, Jane has luckily had a very positive school experience in general and interactions with her peers have been in general very positive. She was always in a typical preschool. Um, we wanted her, she had the, uh, the state, um, early intervention preschool, but then on the opposite days, we always did a typical preschool, the same one that my other kids did just to give her more of that social interaction.
Um, but then it was a natural step for her to go ahead and continue on to our neighborhood school with my son. And from that time, those kids in her first grade class were so good to her. And I think kids are naturally really good at that. Yes. They are so good at just seeing the person and the individual, Oh my goodness.
You have brown hair. Oh, you have brown eyes like me or you know, oh my goodness. We like to play on the bars together, you know, um, they're so good at that. And so I they've always been the first ones to just talk to Jane. Oh, hi. What's your name? You know, um, And I think it's as we get older that we start to see differences more.
And in some ways we kind of pull away because of differences where I'm like, our differences are amazing and we should celebrate them and they make us unique and special. But I think if we, I mean, we can learn so much from our children who don't see that, right. They just are like, Oh my goodness. Look, they're having fun over there.
I'm going to go play. What's your name? You know? Yeah. And so kids have always been really good where Jane had these cute three little boys in the first grade that just took her under their wing and all wanted to be her Valentine and told them all no. And they were heartbroken. And she probably didn't understand what they were saying, you know, but they, they invited her over and I just think we learn so much from them and how they've treated Jane.
Absolutely. So. Oh, I love that. It's heartwarming to hear that. And I also just really, I always hope like I teach my kids that, but I don't go to school with them. So I always hope that they act the way that I've tried to teach them to act with people who are a little bit different than them. With, you know, than them in any, in any way, like you're saying, you know, different hair, different skin color, different family background, different whatever.
And so, I am always curious what you would tell other parents, like, about teaching your children. Like with inclusivity and I know you just said like kids are just naturally good at that and I think that's true and I think kids also can just be, they're just so honest and sometimes that can be like, Oh, don't say it that way.
You know what I mean? So, um, yeah, how do you, I mean, I just, I still remember my parents just being absolutely mortified when I was a little, little girl and being like, Daddy, why is that? Why is that lady fat? And my dad's just like, Oh my gosh, yeah. But I just was so young and honest and didn't understand, you know?
Yeah. So, um, yeah. How do you, how do you tell parents that they should teach their children about being inclusive and the right things to say? Um, I would just say to find common ground to, I think, like I said, yes, we wanna celebrate our differences, but I think if you can find common ground. And I think it goes back also to the old saying of, um, if you can't say anything nice, don't say anything at all.
And so I'm constantly trying to reinforce to my kids, yes, you may think that or that might, but we never say anything that's going to hurt someone or be unkind. Um, we always, and I, and I always have had my own little saying that I tell my kids too, if you think something nice, say it. It doesn't matter what it is.
And I've always thought that like, even to a stranger, Oh my goodness. I love your shoes. I love your shirt. Like there is never, you will never regret being kind. You'll never regret saying something kind and you could just make someone's whole day or turn their whole day around by just saying something very simple.
At the grocery store of, of, oh, wow, I love your shirt, you know? And that sounds so simple and maybe shallow, but at the same time, I'm like, no, I think being complimented and having someone notice you for anything makes a difference. And so I always tell my kids that if you think something nice, say it. Um, and also don't ever let anyone sit alone.
Like I, I think. It's so easy, especially middle school and high school ages, right? For we're so concerned about our kids are concerned about fitting in themselves. I mean, it's scary. It's hard. There's always those leaders that pull kids away and you don't want to be on the outs and it's hard, but I think if we can have the courage to.
Go sit by that person who's sitting alone or invite them to come over. It not only will make their day, but it will also other kids might follow you, which I think is really important. Um, there was a cute little girl when Jane was in third grade and it was kind of her first friend that was a girl because before that it was all these little boys that were so cute to her and would invite her over.
And this girl, um, you know, she asked that Jane could play one day. And, and, you know, it's, As a parent of a child with special needs, I'm always, I'm like, oh my goodness, I always want them to come to my house first because I don't know, I just don't know and I don't know if they know how to interact with Jane.
And so, uh, she came over and she was darling and they played games and they did, you know, squirt guns and they jumped on the trampoline. And when I asked her, you know, later as they became closer friends and they're still really good friends to this day. Um, I asked her, I said, well, what made you reach out to Jane?
And she said, honestly, we just played on the bars together. And so that's why I always say like, just find that common ground and realize that yes, we're going to have differences, but I think I know we all have things in common too. And I think one of the things we all have in common is that we all want to be treated with kindness and we all want to be included and we all want to feel loved.
And that's something I think even as adults, we're still struggling with, you know, because we get in our own comfort zones. And I think it's so important to reach out and include others. And, you know, it's interesting, my cute Jane, I went to, she's still teaching me all the time because she just doesn't have a filter, um, which can, you know, sometimes I'm like, Oh, maybe I don't say that, but yeah.
But she is very honest and it was sweet. I went to pick her up one day from carpool in front of the high school. And as I'm pulling up, I could see her sitting there on the wall. And, um, and then as I got closer, cause there's a line, I see her get up from the wall, walk over, go, and she went and sat down by this girl sitting by herself.
And then she's, I saw her talk to her. And then as I pulled up, she looked up and saw me. And she waved goodbye and came to the car and I said, Oh, Jane, who is that girl? Did you know her? And she goes, No, I just saw her sitting alone. And so I wanted to say hi and see if she was okay. And I said, Oh, what did she say?
And she said, Oh, she just said she was waiting for her ride, you know, which I'm sure so many kids are just sitting there waiting for the right and she probably was not needing someone to sit by her. But I thought it was so sweet that Jane noticed. Oh, this girl sitting alone. I'm going to go sit by her.
Yeah. And such a lesson to me. And then I said, okay, well, how was lunch? And it's the beginning of school. And unfortunately, Jane's friends from middle school are not in her same lunch periods. So she, that's been a little bit hard, right? Starting high school. Um, and I said, well, who did you sit with at lunch today?
Did you have any friends? And she said, Oh, I sat by myself. And I said, Jane, I said, you can go. And immediately in my mind, I'm thinking, Oh, I don't want her to be alone. That's, you know, I'm like, and I said, you can go find anyone to go sit by. I'm sure that people would all want to be your friend. If you just go sit by them.
And she said, mom. I wasn't alone. I always have Jesus. And I said, Oh, you're right. You're right. You know, but I love that. She, she wants to help others. She doesn't want others to be alone. Yeah. She's okay. Knowing that she always has him with her at all times. And then I just said, that is so awesome. I said, you know what?
You can share his light. By going and talking to others too. So I just, anyway, I, I, so I would say just reaching out, having the courage to reach out and be a friend and, and help others, right? It takes a lot of courage for our kids, but I think little by little, or even smiling at someone or waving in the hallway.
Those little things that I think it will slowly get more and more comfortable for people. So yeah, that's such good advice. And I've, you know, been in a, I just was released, but I used to be in a position in our church congregation where I worked with the teenage girls. And I was constantly trying to talk to them about this, about like, there's, usually going to be like a one person that is left out.
And some of them are really honest with me talking about what you just said. Like, well, I don't want to be, you know, if, if I hang out with the wrong people, then I might get excluded from the, you know, the in crowd or the other popular girls might not want to be friends with me if I'm friends with someone else.
And so what I've, I don't know that it ever sunk in or made a difference, but what I tried to teach them was like, you show that So much confidence by not being afraid of, you know, who your friends with it shows other people that if you're totally confident and being kind to others, including, then you kind of turn into an instant leader.
And anyway, so I think what you're saying, it is so powerful for kids to realize that it's like, including others is a superpower. It doesn't. It doesn't take you down a level, it puts you up a level as far as like your confidence of I choose who I'm friends with. I don't want other people dictate that for me.
I love that. I love that you called a superpower because I think it's true. And I think You gain confidence every time you do it. Yeah. And then I always think you will never, ever regret being kind. There are things I regret about my high school experience where I'm like, Oh, I wish I had gone and reached out to that person, or I wish I hadn't been so shy.
And I, you know, but you'll never regret being kind, right? That's anyway, which I think is so awesome. So. Yeah. And I'm always trying to teach my kids to like, you want friends who are a little bit different than you. It's super boring to be friends with all the same people that are all just trying to copy each other and be the same, you know, uh, and that like, you know, some of my very greatest friendships have come from those unexpected, you know, people that cross your path and you become close with that probably wouldn't have sought out, you know, All on your own, but they just, those end up being like the best friendships, but, but, you know, it's also like kids in middle school, they, it doesn't matter where you are.
They're all kind of going through that same phase of who am I, where do I fit in? You know, how do I fit in? So, and you've talked about recently about how Jane is kind of in that like adolescent phase, right? Of, so she just, she just started high school. Is that right? Yes. Yeah. So she's a freshman in high school.
And so I wanted to know just, um, you've talked a little bit about faith and you just barely mentioned that, that she said that Jesus is always with her, but how has faith played a part in all of this and especially like right now where she's going through a transition? Honestly, I Oh, so sorry. She, Jane has always had this incredible connection to Jesus since the time she was little and she would love to sing the songs and, and she would say the most profound things that I thought, Oh my goodness.
And I still remember, and I'm trying to think how old she was, maybe nine or 10. And I was, you know, doing her hair in my bathroom mirror and brushing her hair. And she was looking in the mirror and she goes, mom, what's in my eyes? I'm like, I looked in her eyes and like, I don't see anything in your eyes.
And she was no mom. What's in my eyes. And I was like, and I looked at her and I said, I don't see anything in yours. I just see your pretty brown eyes. And she said, Oh, I know I have Jesus eyes. It's heavenly father in my eyes. And then she just walked away. And I thought, Oh my goodness. How cool is that?
That yes. So for her, she sees the light in her eyes. And I think. I know every one of us has that light within us and you know that the song has image and your countenance and I think it's really cool that she sees that that she you know and it wasn't even a big deal it's like oh yeah and then just walks out you know so it just comes so naturally for her and all the time she loves to dance and loves to perform on stage and so she's been had the opportunity to dance at competitions and and do solos you know with her dance studio and It's been really cool.
Multiple times I've said, Jane, so how was it? And she was mom. I was so nervous, but when I was on stage, I felt Jesus beside me and he told me, you can do it, Jane. And, you know, she just has so many things where she's like, Oh, he's always just with me, you know? And I love that it's given her strength and courage and she loves to read her scriptures.
And. learn about Jesus and she will be in there marking verses and highlighting and writing notes and things. And I just think, wow, like I need to be better. I need to follow her example more. Um, and have that same connection that we have this. amazing sculptural garden here in Utah. Um, and it has, it's, I think it's called the light of Christ.
I'm trying to remember anyway, but it has different sculptures of different scenes of Christ's life. And we went there this last spring and Jane, as we're walking around, we got to the one where Jesus has walking on the water and Jane runs up and she goes, mom, look. And I said, Oh, who is it? And you know, and she goes, it's my best friend.
And I said, Oh my goodness, he is. You're right. He is your best friend. And so I love that she, she just sees Jesus as just like any one of us. I mean, she knows that he's our savior, but she doesn't see him as this distant, hard to connect with. You know, person, she loves Jesus. She loves heavenly father. And she sees him as her friend and she talks to him as a friend and she feels him by her all the time, which I think is really cool.
And it's such a, it's such a lesson and example to me. So I love that it's helped our whole family. When she says these sweet little profound things that are just like, no big deal. Just, oh yeah. You know, I feel Jesus, you know, and it's, it's an example to all of us of how. I feel like we, we, we all, we all know, you know, as, as a family, we're very religious and we love, we talk about Jesus a lot and we love him, but I think we're all striving myself included to have a more personal relationship with him.
And I love that for Jane, it's always been there. And it's just very natural for her. So, yeah, that's beautiful. I've never felt, um, inspired or prompted to say this in any of my, like, you know, hundreds of podcast episodes, but I just want to say that if you're listening to this and you are feeling like a really warm feeling in your heart when summer's talking it, that is, that is beautiful.
The spirit testifying of truth that all of this is true. I just, I just want to say that. Cause I'm just feeling that over and over with everything that you share. I'm just like, Oh, that's truth. Oh, it feels so good. It's so right for you to be sharing these things because they're true. And because that, like, these are the most plain and precious, simple truth of life.
Is that like, we're children of our heavenly father. And that, um, the Jane just sees those things like clearer than, Probably the average person. And that's just so beautiful. And I'm super grateful that you're sharing all of this. It's like such a gift for me to just feel that and experience that. So I just wanted to point that out for anyone who's listening in like, Oh, why do I feel so good?
That's why. Um, okay. I wanted to ask you about, I love that you have a Millie because I have a Millie too. Yes, my middle, my happiest child of my five is Millie. She was just born happy. She's happy all the time. And so, I loved this Instagram post that you put up recently. You said, if you want to know how to treat someone with special needs, look at their siblings.
And so can you tell me about that relationship that Jane and Millie have and what you've observed with the two of them? Oh my goodness. I love that you say that your Millie is your happiest child because when my, my Millie was born. I've always called her my sunshine. She is my happy child. So, uh, and my, all my kids are amazing and happy, but Millie's always had this little, like, just, you know, just happy go lucky personality.
Um, honestly, their relationship has been the sweetest, the sweetest thing to watch and see as it develops and grows. Um, since Millie was born, Jane has obviously loved being a big sister and loving on her and taking and being the mom for, you know, when she was younger, but then. I really felt like from the time Millie was two years old on up that they, I almost had twins, even though Jane was three and a half years older, but they, you know, Millie was able to speak earlier and everything.
And so they, they were just my little twins running around doing everything together. Always wanted to match together and wear the same clothes and do the same things and pack the same bags full of all kinds of treasures. But, and I still remember when Jane was little and Millie would nap and Jane always wanted to play with her and so I'd have to lock Millie's bedroom door so Jane couldn't wake her up before she was done napping and one time I, you know, I was doing laundry or something all of a sudden I'm like where did Jane go and I wrote, we go into Millie's, you know, go up to Millie's room, and I thought Jane was in her room playing.
She had gotten a fork, unlocked Millie's bedroom door, climbed into Millie's crib, taken my phone, because obviously I'm glad I didn't have to have my phone by me every second back then, but maybe I should have, And, um, and was playing in the song, let it go and had like a blanket around her. And like, they were on an Elsa with capes and just like seeing their little hearts out, like they have always been the best, best of friends.
Um, but, and I love that they always had each other and got to play together and they did dance classes together and gymnastics and I mean, everything, they were just inseparable, but as they've grown, I love that Jane was still able to be the big sister. And Jane is the one who taught Millie how to tie her shoes, even though Jane was still kind of figuring it out herself, but she showed her how to do it.
And Millie looked up to Jane and looked to Jane for help and wanted Jane to come with her to dance, to make her feel comfortable and to help her to feel like, you know, like she had a buddy and a big sister there. And I loved it. Millie still got to have Jane as her big sister too. But then as Millie continued to progress, Really started to develop a little bit, you know, in like her academic skills more than Jane.
And all of a sudden Millie was reading a little bit, you know, at a higher level than Jane was. And so it's been fun to see how they transitioned from Jane still the big sister and Millie still looks to her for comfort and guidance. And like, Oh my goodness, I need someone there and let's do this. But now Millie gets to also kind of take on that role in a way and she can look out for Jane too and say, Hey mom, you know, we're doing this.
Is it okay if Jane does this? And, you know, and, and now when we leave them alone, I'm like, Hey Millie, you guys, you guys can make food together. But like, you know, I want Millie helps to take care of Jane and watch out for her, which I think has been really, really cool. Um, and just seeing how she kind of takes care of her too.
And I love that they've been able to have both of those roles and help each other. And to this day, Yes, Millie developmentally is probably at a higher level than Jane in a lot of ways. Um, but she still looks to her as her big sister, which I think is awesome. And I hope that she always, always does. Um, it's been a really sweet relationship to see.
So I love that for her and for both of them. Oh, I love that. And, and when you gave that advice, like if you want to know how to treat. Someone who has special needs look at their siblings. What did you mean exactly by that? You know, honestly, and it goes back to what I said about my older daughter and my son as well.
They don't see Jane as, oh, Jane as someone who has Down syndrome. Yes. Jane has Down syndrome, but they just see Jane as Jane. They just see Jane as their little sister or their big sister who honestly, she's really sweet. But she's really sassy and she has this like stubborn streak and she just will, you know, like my, my son and her, they have a very typical looking brother sister relationship where he teases her nonstop and she will roll her eyes and oh my goodness, you know?
And so I love that they, they treat her like, like anyone else. Yes. There's grace. They give her more empathy and they give her a little more understanding when she makes mistakes or can't, you know, or doesn't quite understand things. And I love that, that there's compassion and grace for her knowing that things do take longer and are harder for her.
But for the most part, they treat her just like everybody else treats Jane the same way he treats Millie L treats Jane the same way she does Millie. They just treat her as their little sister. And I think because of that. Jane has learned how to interact in a, you know, in a, in a very healthy way. where it helps her to interact with other people in that same way as well.
They don't baby her. Um, they, they go to her level and help her to do things and they help her when she needs help. But I think if we, they, they treat her like they would any other sibling, which I love. You know, there is empathy. Yes. But they treat her, they treat her just like any other sibling. So that's just really good to hear.
And good advice too, as far as like, how can you have a good relationship with someone who has down syndrome or another special need. Is there anything that you've learned in like the community of special need moms where they're, I know you've talked sometimes about, um, neurodivergent, am I saying that right?
And neurotypical children and that there, there's differences. Are there things that you've learned from your maybe friends or people that you know in that community who don't have a child who maybe is mainstreamed as easily or I mean I don't I don't know if you feel comfortable like if you're speaking on their behalf or whatever But just being like a mom who has probably more experience in that world Is there anything that you would want to pass on or share?
Um, are you saying as far as inclusion goes and interactively? Yeah, yeah, because I think your advice that you just gave is, is, you know, so good for someone like Jane probably, but then I'm just wondering too, where you gave that example earlier where maybe the parent does need to step in because a child is, um, nonverbal or, you know, if there's anything like that, that you're like, okay, and here's how to apply that for maybe a child who's.
Challenges look this way or I don't know. I don't, I'm always like, I don't ever want to use the wrong term, but you know, Yes, no, honestly, I think that's where, and obviously my experience is with Jane and Jane is unique and every child is unique in their different challenges and things that they're and strengths.
Um, but I would say just in talking to other moms, I think the most important thing is to still look at that child as an individual. Look for their individual strengths and talents and abilities and help those things come out and shine and then also know where they have more struggles or challenges or weaknesses and help them with those.
And we always say inclusion is so so important, I think for all children. I think no matter, no matter what the diagnosis is, or how capable the child is or what their struggles are or challenges are, I think. being included in some way is important for all children. It looks different though for all children depending on their needs.
And so for Jane, it has worked for her to be in the mainstream classrooms at times and to be included in some of those typical classrooms. She loves learning and making lists and reading and all those things. So for her, she loves school. But for a child who maybe doesn't naturally love school or has a harder time in communicating or writing things down or whatever it may be, I think there's still a way to include them, but in a way that's comfortable and works for them and their needs.
And maybe that's through just getting together with other families in the community that have children with special needs because, like I said, their siblings. Will be the best helpers and advocates because they they get it right. Yeah. And they know, or maybe it's through their most areas have unified sports, which is the most incredible program where peers come in and they help kids that have different needs, be able to participate in different activities.
And they're there to help and they want to help. And so they get it as well. And they want to do what they can to make an experience, a good experience for this child, whether it's. You know, um, if they're in a wheelchair or if they need to have headphones to help with sound and different sensory things, I think there's always ways to include our children and to get them involved.
But looking at their individual needs and, and, but also I think it's so important to focus on their strengths. There's this sweet boy, um, and I, I love his mom as well, but he's in Jane's class and he's, and he's in a wheelchair and he is the most darling boy, always has a smile on his face. And we were actually at homecoming the other night and he was talking to me and telling me about an experience he had with two of his friends on stage at the school doing a performance.
And he just kept going on and on. I am so proud of my friends. They did so awesome. I am so proud of them. They were dancing on stage and they did so awesome. And I just thought, Oh my goodness, this boy has this incredible talent for being, for cheering people on positive, for like being like the best hype man you could ever be for his friends.
And I think that's a talent that is. You know, we talk about sharing our extra and sharing our light. That is his extra, like he is a sweet boy. And he, every time I see him asks about my cute son that, um, is on a mission for our church and talks about how much he loves him. And I think We need to, instead of looking at a child for what their diagnosis is, we need to look at them for who they are as a person and what their talent is, what their strength is.
And maybe even if they're nonverbal, honestly, there are some kids that you just walk in a room and their eyes light up and they've changed your day and they don't even have to say a word. Just being around them is a gift and a blessing. And I think if we focus on those things, I think will come away as better people and we'll be able to help more people just by Not looking so much at the struggle, right?
And the struggle is so hard for so many people. And I, and I think we don't know that, you know, cause we're not in everyone's in their own situation, but I just think if we look for the everyone's extra and the things that they have to share with the world and their light. I think that's how, that's how we come together.
That's how we be more inclusive. And I think anyone who's around that, I mean, these teenagers that are involved in those unified sports programs and that are, um, uh, we call them peer tutors in our high school and that come into the special ed classroom and help those kids, they are, you can see it in their eyes there, they come away better people, they come away having learned so much and I promise they'll never forget that experience.
And I promise. They will never not love those kids. They will never not be drawn to the, you know, to people that have different needs. And it opens their eyes more to other people and their needs that they have. And then they're more likely to go up to others they see out in public and say, Oh my goodness, tell me about your job or where do you live or what do you like to do?
And I think that's That's what I would say is that although every child's different and I and I and I know I parent Jane so I know how to help Jane, I think we can still focus on what each individual child strength is, and still try to include them and help them to shine their light, you know, so yeah.
That's a beautiful answer, and I, I remember having experiences like that too in high school and how they totally changed who I was, and I, you know, I think it's helped me as a mom to, to try to teach my kids, you know, what, how much joy you can have just getting outside of yourself and not just. You know, but to see others in the way that God sees them and, and to like how much joy there is in, you know, being of s not not just of service, I don't know.
It's, it always to me feels like you get way more back than you're giving in those situations. But, um, yeah, I, I actually would say that I think. Inclusion, I've always said, is such a powerful thing and it's such a bless. It's been the most incredible blessing for Jane to have her form these friendships and being included in the classroom, the typical classrooms, and to have friendships both with typical kids and with kids that have different needs and special needs like her.
But I think even more so, inclusion is a blessing for those typical kids. Yeah, because they learn so much and they grow so much and they realize, Oh my goodness, look at this amazing world that we get to be a part of now, you know, um, anyway, it's pretty awesome. I have a question for you that keeps popping into my mind and I wasn't planning on asking this, but I just can't push it away again.
So what has Jane taught you about the atonement of Jesus Christ? Oh wow. Um,
honestly, probably just that there is so much love. There's so much love and understanding and that we, I don't even think we can fully understand that our Savior has for us. I think, I know that he covers all of it, and I'm so grateful that Jane has taught me to look. honestly, at the individual to look at, to come closer to our Savior, to have that connection with Him.
Um, and honestly, to really, yeah, to look at the person, to find, to find the good in people, to look for their light, and to find, like, the Savior is with all of us. He's there for all of us. And I love that she's helped me to feel His love more. Um, there have been some really Really? I mean, as much as she's been such a blessing for our family, but there have been some really, really hard moments to, um, trying to navigate different things with friends and, and inclusion and different things.
And I've had to come to rely on our savior a lot more. Um, because there are things that are personal that, you know, that not everybody understands or that my husband and I have to work through. And I think. It's been so awesome to know that I have our savior, that he's there, that he understands those feelings that we feel, that he knows how to help us and how to help Jane feel comforted and help as well as she navigates all these hard things.
So that's been, that's, that's what I would say is just his, his immense love that I think we have no way to fully understand at this, you know, in our, in our human capacity. So, right. Right. Yes, I love that answer. And I'm feeling that same like warm feeling of just testifying of truth. That's so good. Okay, um, tell me about your book. Cause you guys are about to release a book, right? It's on pre order? Yes, tell me about it. Uh, you know, the book came about, I think I've always loved writing and I've always loved children's books.
I, I mentioned before, one of my favorite things when my kids were little was to go to the library and get stacks of books and then come home and sit on the couch and read through them all. And I've always loved picture books because I think they really do. They tell the sweetest little stories and they have the best messages that I think we can all learn from.
I think really like, and I've mentioned this before too, but kids teach us so much. And I feel like those basic messages on how to treat people and how to be kind and loving are found in those books. And so I've always loved them. And I, when my oldest daughter was younger, I started writing and, and then when Jane came along, I started to realize, oh my goodness, I I was so nervous.
I was so scared and overwhelmed when she was born. And I thought, Oh my goodness, our life will never be the same. And our family won't be the same. And how can we do all these things we planned and our plan is in our, her life's going to be so different and it's going to affect our whole family. And I thought that was going to be such a hard thing.
And yes, there have been, like I mentioned, hard things along the way, but I also learned that sometimes it's the plan that we have for our life. And what we think is supposed to happen or should happen is not always the best path. Right. Only father has greater plans and ideas for us that are so much better than we could ever even fathom or realize.
And so what I thought would be this horrible challenge and struggle for our whole family has turned into be the most incredible blessing for our family. And every child has struggled and every child has challenges. When Jane was little and began to grow, I started to think, Oh my goodness, look at this.
Yes, she has Down syndrome, but she's our little girl and look, she's doing this and look how cute this is. And look at this little gift that she has of always knowing when someone needs help or always knowing when someone needs a hug, even when it's a stranger at the store, you know, or, you know, leaving these cute little notes for us or just this.
This, this innate ability that she has to find the joy and the wonder in every little thing. One of my very favorite quotes is, um, enjoy the small things for one day you'll look back and realize they're the big things. And I stand by that to this day, because I look back on my children, you know, I have a 21 year old now, and my favorite moments.
Are those little small things of playing in the backyard or playing a game around the table? And we've done some fun adventures and vacations, which are also wonderful. And those are wonderful things too. But even on vacations, my husband and I say our favorite times are having all three meals together as a family.
Yeah. Cause that's hard to do. It is. Yeah. Um, so I think that was kind of the inspiration behind the book was, okay. Yes. There are some things, Jane has Down syndrome, but I don't want to focus on her diagnosis. I want to focus on all the amazing gifts and talents and blessings that she has in her light and how she can share that and all of her extra.
And Jane brought so much extra joy and extra wonder into our lives and extra excitement over the little things. And that's what I want to focus on. And I love that. My hope is. That through this book, this is a book that you don't even know that Jane has down syndrome until the very last page. And I want it to be something where kids will read this book and think, Oh my goodness, I like to do that.
Oh, I, my little sister did that, or I love to do that. Or that's just like me. And then at the end of the book realize, Oh wait, Jane has down syndrome and think, Oh my goodness, we have a lot more in common than I realized. And maybe the next time they see someone with down syndrome or with any special needs.
They'll be more likely to walk up and say, Hi, my name is so and so, or how are you, or do you like to do this, or, I just think if we, like I said before, if we can focus on finding that common ground, and knowing that it's our extra that makes us special and unique, which is awesome, but we still have a lot of things in common too, and if we can see that, Then we can, you know, establish more relationships and friendships.
And I just think that's probably my biggest message is to let help everyone, no matter who they are, be able to share their light and their talents or their extra and, um, and then find that common ground and be a friend to everybody. And that's, that's my hope for the book is that more kids will be able to see that and reach out.
And the reason why it's called a little extra Jane, I should mention is because children with down syndrome have one extra copy of the 21st chromosome. So they have one extra chromosome. And that's why my Jane's Instagram account that I run for her to advocate is called a little extra Jane, because she does have an extra chromosome.
But I think there's so much more extra that she has that she shares with our family and friends and everyone around her. So That's so beautiful. I really love that. I love that you guys made, you know, that you wrote this book and that I, I can't wait to read that to my kids too. And I think they'll have that same reaction.
Yeah. So if there's one message, Summer, that you want people to remember from this podcast episode, what do you want that one message to be? Oh, just to Reach out to others to be kind to be inclusive to have the courage to be a friend to other people, um, to help other people share their light, and to find their extra to share.
And to like see the beauty and magic in the world that that I'm so grateful that Jane has helped me to see. Um, anyway, that that would be my message just to share with the world that we all have so many different talents and abilities and things and to help people share their extra. I love that. Where can people find you guys and where can they preorder your book?
Oh, you're so sweet. Um, a little extra Jane on Instagram and there's underscores under between every word. So a little extra Jane, and then you can preorder the book on a little extra Jane. com. Or, um, jumellapress. com. So. Okay. Wonderful. Thank you so much again, Summer. It was such a delight to have you on today.
Oh, well, thank you for having me. It was so fun to visit with you and get to know you better. So thank you.
